The Fourth Sign

Three Months Down...

2010-09-27T21:19:00.000-07:00

And the last of my medical news came in today: the chest x-rays were clear. No metastasis in my rib. So far, so good. Only nineteen years and nine months to go :)!

Yet More Human Maintenance (with a Nod to Rafia)

2010-09-26T18:14:00.000-07:00

The past couple of weeks have again been very busy with medical stuff. On Friday a week ago (9/17), I had my first posttreatment bone and CT scans done. I arrived at the hospital at 8:30 when they asked me to, and even though I'm 47 and have not menstruated since November 2009 (because of my treatment pushing me into an early menopause), they felt they had to give me a pregnancy test. So that took about an hour, after a half hour to get registered. At 10, they gave me the shot with the radioactive stuff for the bone scan, which had to be in my body for two hours before they could do the scan. So sat and waited. Again. I got the bone scan, which takes about 45 minutes and goes from head to toe and is actually pretty relaxing. Around 1 -- and remember, I had to fast for all this, so I've had NOTHING to eat, just some water -- the radiology guy handed me over to the CT guy, who gave me about 1.5 liters of water that he put something in (I thought he said steroids?), and he told me I had to drink it all down and wait an hour and a half before I could have the CT scan because all this stuff had to reach my lower intestines. So I sat and waited. Again. And went to the bathroom. A lot. I had the CT scan, which took only about 5 minutes and was finally out of there at around 3:30, feeling rather ill from lack of food and whatever was in that water. I came home, had a quick snack, and laid down for a bit before having some lovely soup that Kyle made for dinner.

On Monday, I saw my primary care physician for my yearly exam/checkup. Here's what she had to say:

My bloodwork looked really good. Cholesterol, liver and kidney function, counts -- all were great. Except my thyroid numbers. Evidently, it's not uncommon for women going through menopause to lose thyroid function to some extent. My numbers were very low. So now I'm on something called Armour. Hopefully, it will help my thyroid function and increase my metabolism, giving me more energy and helping me to lose weight.
To prevent recurrence of my cancer, I need to eat 7-9 servings of fruits and veggies a day. That's like four cups. I'm supposed to stay away from bananas, guava, mangos, and a couple of others because they have too much sugar. Really good for me are the following (all must be organic): any kind of berries, cruciferous veggies, greens, apples, citrus fruit, something called broccosprouts (which I have yet to find), and others. Also good are pumpkin seeds and other nuts and grains. I need to limit my intake of refined sugars and red meat. So basically, it's a sensible diet. I'm enjoying it so far.
To reduce inflammation of my mucous membranes in certain parts of my body, and to stabilize my hormones a bit, I'll be getting a vaginal cream with minute traces of estradiol and testosterone. I know. Seems weird, but I'm told it works. I was supposed to do this saliva test that costs $150 and that takes A LOT of saliva as a baseline test for my hormone levels. See below for my decision on that.
Also to help prevent recurrence of my cancer, she put me on a fish oil supplement and doubled my intake of vitamin D (to 2000 IU per day).

Just this past Friday, I saw Dr. Krekow for the first time in three months. I actually became more than a bit annoyed, much as I like her, since she kept me waiting almost an hour and a half. And I had a morning appointment! Grrrr. I just sat there and watched the minutes tick away and got more and more steamed. I mean, this is my vacation time I'm using now since I'm out of sick time again! Anyway, once she finally arrived we had a nice chat. Here's what she had to say:

My chances of a complete cure (i.e., the cancer NEVER returns) are 60%-75%. I thought I remembered her saying that from the very beginning, but I wasn't sure, so I asked her again.
That said, every year that goes by with no cancer means the likelihood of it coming back decreases.
With the "personality" of the type of cancer I have, she will not say that I'm "cured" at five years, or even ten years. She's seen this type come back as late as 15-18 years after initial diagnosis, so she said she would not use the word "cure" until after 20 years. That means I will not be able to breathe easily and forget this nightmare until/if I reach 67.
She said that my numbers look really good, and that I look very healthy. She also thought that I'm healing quite well from the implant surgery.
My bone and CT scans looked great overall except for one very small spot on my fourth rib on the left side, basically directly under my mastectomy incision, where the rib joins the sternum. She said that the spot is probably some inflammation from radiation (I also have some areas of my left lung that are inflamed), but she ordered a series of chest x-rays just to rule out the very slight chance that it's metastasis, which I had done on Friday afternoon. I should have results from those tomorrow or Tuesday.
I asked her about the saliva test and whether it would be all that much more accurate than blood levels. I really didn't want to do it because (a) it's very expensive and (be) it would be a huge pain in the butt to spit in this vial for about an hour to give them enough saliva for the test. Dr. Krekow said that blood levels would be accurate, so she ordered those tests.
I will stay on Tamoxifen for probably another two years and then switch to Femara. It is more effective at reducing the chance of recurrence, but I cannot take it until my ovaries are completely shut down.

That's about it for now. Everything at work is going well, just very busy with the beginning of the semester. We've had one of our best friends, Mike Larson, visiting since Friday night and have had a blast with him as we always do. He will head out on Tuesday to the deep south of Texas to visit his grandma for half a week. I hope all is well with you. Peace, Jody

New Tatas -- Ta Dah!

2010-09-03T21:50:00.000-07:00

The past month or more has been a bit of a whirlwind. As you may recall, I saw my plastic surgeon, Dr. Heistein, about halfway through radiation. He was amazed at how well my skin was doing, so we went ahead and scheduled the surgery to remove the tissue expander on my left side and put in permanent implants on both sides. I also had made an appointment with my oncologist for my first posttreatment checkup, and she wanted me to have a mammogram, bone scan, and CT scan before that checkup. So one day around mid August I'm chatting with my friend Gretchen about all this, and she pointed out that I might want to get the mammogram on my right side before I get the implant. I can't believe I hadn't thought about that! Thank the FSM that Gretchen is a very smart woman, obviously a better planner than me! I called my oncologist's office and asked The Good Nurse Sue if I should have the mammogram before my implant surgery, and the answer was a vehement YES.

So now I'm under a time crunch to get the mammogram. The earliest I could schedule it was exactly a week before my surgery: mammogram, August 18, surgery, August 25. I go in for the mammogram, a diagnostic one, and the radiologist calls me in and says first that everything looks fine. Whew. Then he says that there's this one tiny area of calcification that's questionable, deep in my breast, close to the chest wall. The only reason he's hesitating over it is because the same area in last year's image is not as clear, so he can't tell for sure whether it was there then. He recommends follow-up at six months. Now I had it in my head at the time that I was going to be getting a breast MRI later, along with the CT scan, etc. So I called my oncologist and spoke to her P.A., Lisa, who checked my chart and said that no, Dr. Krekow had not put down that she wanted me to have a breast MRI. Even if she did, Lisa said that it wouldn't give us any more info than the mammogram did for a calcification. And even then, I CAN'T have an MRI because I have a tissue expander with a metal valve! In talking with her about all this and about the fact that I was scheduled to get my implants in less than a week, she posited that I might want to go ahead and get a biopsy. My mood at this point is getting more and more bleak. I called the mammogram place, Solis, and told them that I needed to schedule a biopsy and my oncologist would fax the order over soon. They said the earliest they could get me in was Monday, August 23, that it would take that long to get clearance for the biopsy from my insurance company. Tick-tock.

I called Dr. Heistein's office and explained the situation to them. One of his nurses said she would relay all the information to him and have him call me. At this point, I'm kind of leaning toward not having the biopsy because it doesn't seem like I'm going to get results from it before my surgery has to be done. It's now around 5 p.m., and Dr. Heistein calls. He told me that it was up to me as to whether to do the biopsy, but he also said that if I were a member of his family, he'd advise going ahead, just for the peace of mind. "Because," he says, "the chances of your actually having something bad there are minuscule." I point out to him that we may not get results by COB Tuesday when we need them since my surgery is scheduled for 7 a.m. on Wednesday. He says he'll call Solis to see if he can get my biopsy scheduled earlier.

The next morning (Thursday, 8/19), I'm getting ready for work and my phone rings. It's Solis, asking if I can come in that afternoon at 1 p.m. for my biopsy! Yay! Somehow when a doctor calls and says it's got to be done sooner, all other problems and complexities melt away. So I show up that afternoon and have the joy of having another stereotactic biopsy done, explained and described fully in a previous post, so I won't go into the details again, except to say that when I arrived, the tech was very doubtful that they could get the exact sample they wanted to get because the area was so small and so deep. She said if they couldn't get it, I'd have to have surgery to have a biopsy. My mood gets bleaker still, even though I didn't think it possible. After 45 minutes of extreme discomfort for me, however, the tech and the radiologist seem to think that they have a sample with the calcifications. The tech goes to take an X-ray of it, and returns triumphant. They place a marker in me, bandage me up, and take a couple of mammograms to be sure all looks good. It's over and I go home for the rest of the day. I am happy that it's done and I don't have to fret about facing it all weekend as I would have if I had had to wait to get it done on Monday. I still have to await results, but I've gotten pretty good at putting that out of my mind and being patient.

I get a call from Solis Monday morning while I'm teaching a class. I actually forgot about the call until about an hour after the class (my caller ID didn't ID the call, just gave me a number I didn't know). So I check my messages call them back immediately. O frabjous day! Callooh! Callay! It's benign! I can have my surgery as scheduled on Wednesday!

After all this tension and angst, I was almost giddy walking into the hospital on Wednesday morning. Well, I would have been giddy had it not been 5:30 in the morning. So mostly, I was bleary-eyed. But I was also somewhat giddy and excited and joyful that I was going to get rid of the damned tissue expander and get my implants! In other words, my mood could not have been more opposite of what it was last September 2nd when I had my mastectomy. Surgery started on time (7 a.m.), I was in recovery by 8:45, waking up by 9-ish, and leaving around 10. The pain was kind of bad but not horrible; it stayed that way most of Wednesday. I couldn't lie on either side, and I'm not comfortable sleeping on my back, but I did. Kyle and I both slept most of the day, in fact.

The next day, I felt a lot better and was able to lie on my sides, gingerly. By Friday, I was able to stop taking pain meds, and by Saturday, I just had some lingering soreness and achiness, but mostly I was just really, really tired. I worked from home most of this week except for Tuesday when the library had several big academic-year kick-off events planned that I needed to be there for. I went in and worked a full day today as well.

Thanks once again to Kyle for taking care of me, cooking for me, and helping me. And thanks to my coworkers for filling in for me without complaint. Peace, Jody.

Visit to Monroe

2010-08-15T21:06:00.000-07:00

This post won't be long because it's late and I have to get up early for a busy start to a busy week tomorrow. But I wanted to write about visiting my brother-in-law, Paul, this weekend. We drove over on Friday, and I must say that it was difficult being there again. I've only been there twice since my sister died; the last time was just for one night when we were moving down here from Michigan, so I think I was so keyed up about the move that being there didn't register much. My sister's house is almost exactly as she left it, and I can see her everywhere I look when I'm there -- quite literally, since Paul still has about 10 pictures of her just in the living room, even more elsewhere. Ann's presence absolutely permeates that house, which is not a bad thing, but it's almost like a sweet torment being there. I feel so close to her being surrounded by all that she loved so much, but the one thing that would make me happiest is lacking.

And it's not just Ann whom I think about while spending time there, but my mother also, of course. Some of her furniture is still there; we sleep in her bed, in fact. I see her not just in that house but in so many of the places around town -- a wholesale music supply company where she once worked, the site of a Sealtest ice-cream shop we used to go to, a store where we'd shopped together many, many times. I miss my mother so much, but the ache inside me for her isn't as keen and sharp as it is for my sister. I'm not sure why but I think part of it is because even though it was devastating to lose my mother, I was prepared for her death somewhat. I knew it was coming at least. This was not at all the case for my sister -- a 49-year-old athletic, slim nonsmoker who'd never had a serious illness in her life. But who nevertheless dropped dead on October 13, 2006, as though she'd been simply shut down like a machine. I am still trying to wrap my head around it. I don't know that I ever truly will.

Peace, Jody

The Dog Days . . .

2010-08-01T13:34:00.000-07:00

I posted this screen capture on my Facebook page and thought I'd share it with you here as well. We have a searing ball of nuclear fusion in the sky that other peoples on earth know as the sun, but that we in the South are now avoiding at all costs since even a few seconds of exposure will render one down into a large puddle of sweat and blistered skin.

I kid, obviously. But it is very, very hot. The kind of hot that makes you draw the blinds and stay inside as much as you possibly can. I was hand-washing some of my delicates today and thought it might be easier to rinse them outside on the deck. Hah! What an idiot I am. I was out there for around three minutes and thought I was going to pass out.

Since my last actual newsy post, I've been to DC and had a very busy July. ALA was a blast! I got to see my best buddies Mike and Jerry several times, and I met lots of new people in library land: Maura (and her bf Matt, who is getting his PhD in Am Studies), Laura, David, and Kristin. My poster session went very well. I had around 30 people stop by to chat and ask me about my work, which is probably more than would have shown up if I were giving an actual presentation. The weather was good, if a bit hot, and I managed to keep my energy up pretty well, even though I was only about a week out of radiation. I finally ran out of steam the third evening we were there and went to bed around 8 p.m. The last day, a bunch of us got a "professional" tour of the Library of Congress, much more behind the scenes than the public tour. It was really interesting! I'm glad we took the time to arrange it in advance (if you are a librarian and ever want to do this, be sure to go to the LoC's website at least a month before your trip to request the professional tour).

I mentioned in my last post that I was on a search committee for an information literacy librarian -- we have since completed our interviews and offered the post to a woman I liked very much. She will be starting at our library tomorrow, and I know she will be a great addition! I'm pleased we were able to find someone so well suited to our workplace.

My health continues about the same. I am slowly getting back to normal but don't feel that I'm there yet. Frankly, I wonder if I ever will be. I tire much more easily than I ever have, and I've been experiencing some mild to moderate joint pain since about halfway through radiation. I've spoken with my oncology nurse and my radiation oncologist about it, and they say that they don't think it's metastasis on the basis of my description (stiffness in joints throughout my body that goes away after I'm up and about for more than a few minutes, intermittent pain that varies in intensity). As it turns out, I was misremembering about my scans and checkups last time I posted. I will be seeing my plastic surgeon this month and getting my last surgery on August 25th, barring any problems, but I don't start the other stuff until September. So I guess I will find out then what's up with this joint pain. I hope so, anyway.

Right after returning from ALA in DC, one of my good friends and closest colleagues at work, Eric, was offered a position at a small, private Catholic college in Austin. He and his wife both got their undergrad degrees at UT Austin, and they've been longing to get back there, plus the pay at the new job was very generous, so he will be leaving us soon to start that position. I am very sorry to see him go, but I know we will stay in touch. I am helping to cover some of his liaison responsibilities (Rafia and I are going to share the instruction and consultation duties for the curriculum and instruction half of the College of Education), so that will mean that I'm going to be busier than ever this fall. The VERY good news, however, is that Eric's position was approved for refunding by the muckety-muck university hiring committee, so at least we will be able to hire someone to replace him. With the budget cuts we've been experiencing, it was by no means certain that this would happen! If you know an academic librarian with an education background, please give him/her a heads up to be on the lookout for the job posting here. It should be up pretty soon. In fact, we have a position up there right now for a science and engineering librarian. So pass that link along if you know anyone who might be interested!

Yesterday, we went to a BBQ at the house of some friends we play Warcraft with, Paul and Renee. They live a couple of hours away in Graham, TX. We got there around 3:30-ish and stayed until around 9, ate way too much good food (brisket and pork that Paul had smoked for about 14 hours), and VERY much enjoyed visiting with Paul, Renee, and her kids. The added bonus this year (we did the same thing last year about this time) was that one of our other WoW buddies, Adrian, came up from San Marcos with his wife, Rosario. It was awesome to meet Aden (his game name) after we've spent so many years playing with him and talking online! Rosario was very sweet to put up with our gabbing almost exclusively about Warcraft the whole night :).

I'm going to sign off now so I can get on the game for a bit and spend the rest of my Sunday relaxing. Peace, Jody.

"I Fight Like a Girl"

2010-07-28T15:54:00.000-07:00

You may remember that I mentioned here that I was photographed and interviewed for a breast cancer survivor project? It's called "I Fight Like a Girl" and the website debuted today! Click below to see our photos and read our stories.

http://www.ifightlikeagirl.info/

Click on "See More" to find my page, or just follow this link:

http://www.ifightlikeagirl.info/jody

Please feel free to share "I Fight Like a Girl" with others who may enjoy it or find it useful!

A Day to Celebrate!

2010-06-05T12:40:00.000-07:00

At long last, I am done with all cancer treatments! I finished radiation therapy yesterday. Since I started chemo in early October, this means that I've endured and survived eight months of intensive treatment. I am very VERY glad to be done with this part of my journey, but I still have the last part of my reconstructive surgery to get through. So starting in July/August, I will be busy with my regular yearly checkup; a full-body MRI, bonescan, and CT scan; bloodwork (they will look for tumor markers); followups with all three of my cancer-related docs; and the decision as to whether to go ahead with the final reconstruction on August 25. I am very thankful to have survived thus far and so grateful for the support of Kyle and all of you. Though I am relieved to be done with treatment, I will not breathe easily until (or if) I reach the five-year cancer-free mark. As I have said often in this blog, I don't mean to be negative, just honest and realistic.

The second big piece of news is that we sold our house in Michigan! Good lord, what a relief. And right up front, I want to give all the credit to my mother-in-law, Carol, who I hope will be long blessed by whatever god(s), saints, or fates there may be. She and Kyle and my father-in-law did everything regarding this transaction. I decided early on that I could focus on only one extremely stressful thing at a time, and since I was the one with CANCER, it seemed that that should be my focus :). I completely put the sale of the house out of my mind except for the occasional times that Kyle mentioned it to me. Honestly, it was the first time in my life that I really was able to completely NOT think about something that stressful -- well, to be honest, I did think about it at the beginning of each month for the past year when rent and mortgage payments completely ate up my paycheck. But I just tried to breathe deeply and not worry. So last Wednesday, we closed on the sale. The people who bought the house do not have pristine credit and so could not get a traditional mortgage. Carol was able to broker a land-contract (aka owner-financed) deal, which although risky, is certainly better than nothing! In essence, we will continue to pay our mortgage, but the new owners will be paying us each month. Even though we still have the mortgage, we technically no longer own the house, and so they are responsible for any repairs and maintenance that is needed. Carol is a very good judge of character and said that she really trusts that these people will do what they are now contractually obligated to do. Also, they are paying us a higher interest rate than we pay our mortgage company, so we will theoretically -- if all goes as it should -- actually make money on this sale eventually, which we would not have done had the buyers been able to get a traditional mortgage. So we all need to keep our fingers crossed and hope that everything goes well!

On to more mundane news: my skin has continued to do pretty well with the radiation treatments. I have had only mild tenderness and peeling, similar to what one would get after a sunburn, on the upper-left quadrant of my chest. I was quite puzzled by a rectangular-shaped red area on the upper-left quadrant of my back and so asked one of the radiation techs about it yesterday. She said it is the burn from where the radiation has been *exiting* my body. I never thought about the fact that it goes out the back, lol! So I'm a bit itchy on my back as well. My radiation nurse told me yesterday that I can expect the side effects to continue for two weeks and then start to get better. She also said that I have to be extremely careful about sun and wind exposure for the next year -- I'm supposed to wear sunscreen *under* my clothing now since fabric doesn't always block UVA and UVB rays. I also went to the dentist (my cousin Van in Fort Worth) for a checkup and cleaning last week, and he said I didn't need to have any work done, which I was actually surprised by. The chemo and all the anti-side-effect drugs had made my mouth SO dry for SO many months that I thought surely I would have some bad decay. But Van said we just need to keep an eye on one tooth and that was it. So, yay!

Work is going well, as usual. I am now very busy with committee work: I'm on a search committee for a new librarian in our Information Literacy Program Area (these are the folks who work mainly with first-year students), and week after next, we will be starting the interview process with our top four candidates. Each interview lasts about a day and a half with the candidates meeting multiple groups/people in the library, giving a presentation, going out to dinner, as well as meeting with the search committee for 2+ hours. That week, we will have two candidates in, the following week we will have one, and the last week of June, the final candidate will be on campus. I also have several instruction sessions coming up before I go to the ALA conference in DC June 24-28, and I am on another committee that is setting up guidelines for digitizing collections both within the library and across the campus. What did I say in my last post about summer being slower??

We had so much fun last Sunday at the Memorial Day party that Gretchen organized and hosted at her parents house; the photos I put at the start of this post were taken there. Since they have a pool and were agreeable to us all descending on them like locusts, we totally could not resist. It was a hot, sunny day -- perfect for the pool! I stayed in the shade most of the day and wore a short-sleeved turtleneck and swim shorts to keep covered, but I did allow myself to swim in the refreshing water for a short while. Gretchen smoked a huge brisket, baby-back ribs, and home-made sausage -- everything was SO delicious! Gretchen and her mom even invited our dogs, so they had lots of fun running around and playing with everyone. It was a great day :).

On a more somber note, I have several times lately been close to tears regarding the tragedy in the Gulf. I consider myself a Louisianian after having lived there for 20+ years, and to see the lifeblood of that state being ravaged because of corporate greed and malfeasance and idiocy, as well as (at best) neglect and (at worst) active illegal activity within the federal agency that oversees drilling -- it's almost overwhelming. I really do not understand how the U.S. Gulf region and surrounding nations will recover from this disaster in my lifetime, even if I happen to live to a ripe old age. I have heard that some are comparing this event to Chernobyl; it seems much, much worse to me.

That's about it for now. I hope you are happy and well. Peace, Jody.

Am I Glowing Yet?

2010-05-16T10:16:00.000-07:00

So I thought I'd upload some new photos for those of you who aren't on Facebook. The little black dog is the one I referred to in my last post who followed Kyle and Lightning home. We have decided to keep him, and his name is Thunder, of course. He is VERY sweet and funny, and I am happy to finally have a dog who loves to cuddle after living many years with two dogs who didn't/don't (as much as I love(d) Christmas and Lightning, neither one likes(d) to snuggle). Kyle tells me that I'm spoiling Thunder already, which I doubtless am, because I allow him up on the bed in the evening before I go to sleep. In fact, our ritual has become that both dogs and Kyle hang out with me on the bed at night before all three kiss me goodnight and then leave me to sleep in peace. Of course, Kyle isn't doing ANYthing that would spoil Thunder at all (hah!).

Updates on my treatment: In my last post, I mentioned that I would ask Dr. Krekow her opinion of Dr. John. As I expected she said he is very competent, but she agreed that his bedside manner leaves much to be desired. With that reassurance, I was ready to start radiation. Dr. Krekow also said that I would not see her again for six months (maybe it was three?) unless I had problems, and before I see her again, I will have a mammography, CT scan, bone scan, and MRI to check for metastasis(es).

I was supposed to start radiation on April 19, but Dr. John's office had a huge computer SNAFU, so I was unable to start until April 22, which will push back my ending date. I am currently just over halfway through. The treatments are very fast (usually about 30 minutes from start to finish) and painless. I have so far been extremely blessed by the fact that I have had almost no side effects at the treatment site; my skin is a bit pink and only very slightly itchy. I can only hope that it stays this way.

I saw my plastic surgeon, Dr. Heistein, on Friday for a six-month checkup on my status in general and my tissue expander and condition of my skin in particular. He was amazed that my skin is doing as well as it is, so I talked with him about doing my last surgery earlier than what he normally recommends, which is six months after completing radiation. I would like to get it done sooner for two reasons: (a) the tissue expander is still uncomfortable and awkward-feeling, and (b) we have already paid my hefty surgery deductible ($2000) for the year, so if I have the surgery before September 1, we won't have to pay it again (since I work at a university, our insurance year runs from Sept. 1 through Aug. 31). I emphasized to him that I don't want to endanger myself or have a bad outcome, but if it's possible to do this thing in August, I'd like to. He said that he didn't think it would be problematic, especially since my skin is doing so well this far into my radiation treatments. So I have scheduled another check-up with him for August 9, and if he thinks that I look good then, we will go ahead with the final stage of reconstruction (permanent implants in both breasts) on August 25. It's not an ideal date in terms of my work, since August 26 is the first day of classes, but it is outpatient surgery and they say I will only need to be off work for a week or so -- not too bad.

With all that news covered, I will say that for the most part, I am feeling well. I was having some issues with pretty bad joint pain in my lower body -- back, hips, knees, and feet. I talked to Dr. John about it, and he said that it was not due to radiation. He thought that perhaps I had a slight flu that was manifesting itself in this very mild way since my blood work is and has been totally fine, and I have not had fever or any other symptoms. This pain seems to be getting better, but it's not completely gone. Other than that, I am tired most of the time, and I'm still having some internal issues from the chemo, but that's to be expected (Dr. Krekow told me that it will take a year or more before all the side effects from the chemo are gone).

Work is going well. I am actually very happy that the semester is over as of this past Friday since it will give me a chance to breathe and catch up. As I believe I have mentioned here, I am presenting a poster session at the American Library Association's Annual Meeting in Washington, DC, in late June. So I have been working on gathering the data for that, and now Kyle is helping me put together my poster. (Some of you may not know or remember that he was a graphic designer by profession before we moved to Michigan, so he still has all those skills, which means I will have a killer poster. Woot!) I am really looking forward to going to DC; it's my favorite city in the world, and of course two of my best friends live there, Mike Larson & Jerry Maready. My former boss at APA and still a great friend, Mike Cannon, also lives in the area, but not in DC proper, so I hope he might have the chance to come down for a visit since I doubt I would be able to get up to where he is (Frederick, MD).

The big deal for the past week or so at work has been that the third floor of the library, where my office happens to be, will be undergoing a complete renovation over the next six weeks -- ceilings torn out so that a new sprinkler system can be installed, new flooring, paint, the works. So my neighbors, Eric and Rafia, and I had to move all our stuff this past week to the fifth floor, where our temporary digs will be. Admin has arranged for movers to come in tomorrow and move all our enormous furniture up -- thank goodness we don't have to touch any of that. But it was very exhausting having to pack and move all my books and other stuff. I found out after I had done it all myself that our all-around exployee/helper extraordinaire, Mako, and her student workers were going to help me, lol. So it was stupid on my part to have done it all, but at least it's done and I think I've recovered. Mostly.

Kyle and I celebrated our 10th anniversary this week, May 13. We had a wonderful dinner, and he gave me the most beautiful card on which he wrote some very dear and loving words that mean a great deal to me. We decided that that would be all we would do in celebration until I am finished with radiation and the house deal is settled (it looks like we may be selling it, but I'm not talking about it too much until the deal is done and all papers are signed).

That's about all I can think of for now. I will try to post more often now that things have slowed somewhat at work. I love you all and wish you a very happy spring. Peace, Jody.

Final Chemo! Hopefully forever?

2010-04-03T09:54:00.000-07:00

So the big news with this post is that I had my FINAL CHEMO yesterday! Woo-hooo. As I implied in the title of this post, I hope that means my very final chemo, forever the last one. But there is no guarantee. What makes me nervous, and I think I've mentioned this here before, is that my cancer is almost exactly like my mother's, who died from it about 5.5 years after her initial diagnosis. I don't remember exactly how long it was between the end of her initial chemo (i.e., where I am now) and the discovery of the cancer's first metastasis in her spine (it later got into her liver and her femurs and the skin near her left eye). I don't want to seem like I'm being negative -- honest, rather, in what I'm thinking about and feeling.

I am very happy to have finished chemo. It was a challenge like none I've ever faced. The Big Bad (Epirubicin, Cytoxan, and 5-FU) during the fall months was particularly difficult, as those who've been following my blog since the beginning probably know. I won't go into the litany of side effects from those drugs; it's too depressing and long. The ensuing protocol that I've been on since January 8 (Taxol) has been blessedly easier, although not without its share of side effects. These have included intermittent but fairly major numbness in my right toes and foot, with very minor numbness in my left toes. I have had NO nausea or vomiting and only minor constipation on this drug, but the fatigue has, on occasion, been almost overwhelming, and the steroid-induced insomnia on Friday nights VERY annoying. All in all, I can only wish that anyone having to take Taxol has it as easy as I have. I know that not everyone does; in particular, I met a woman who had lost a few toenails because of it.

I'm sure I've written here about what the rest of my treatment will be like, but I will go over it again in case you've forgotten. I have already had two consultations with my radiation oncologist. I am not going to the one affiliated with the Breast Care Center of North Texas where Dr. Brian (my surgeon) and Dr. Krekow (my oncologist) practice, mainly because their office is so far for me to drive to every day. They referred me to a practice that is right on my way to and from work, so I will save a lot of time and gas. Dr. Krekow tells me that Dr. John (no, not that "Right Place, Wrong Time" Dr. John :)) is very competent, and she's always been pleased with the care that he gives. I did meet once with the radiation oncologist associated with Dr. Krekow (her name is Dr. Tomberlin) right after my surgery last September and liked her very much, more so than Dr. John who is an older man, very noncommunicative, brusque, and cold. I mean, he will answer questions but doesn't volunteer much at all and does not seem very caring. The technicians I have met at this facility, on the other hand, have been very friendly and caring, and they will be the ones I will be mostly dealing with. I have a chemo wrap-up meeting with Dr. Krekow on April 16 and am planning on asking her opinion of Dr. John again. I can deal with someone who has a bad bedside manner as long as I know he's competent :). So the schedule is a walk-through of radiation on April 14, and then I begin actual treatment on April 19; it will last for six weeks, and I will have to go every day (M-F). They tell me that total turnaround time is about an hour from when I walk in the door, but the actual treatment is under 10 minutes. The predicted side effects will not kick in until about three weeks into treatment and will include skin irritation at the site (anything from a tan-like effect to a sunburn-like redness and blistering) plus fatigue that will be mild at first but get worse. No nausea or vomiting or other stomach problems are associated with the treatment I will be getting (people who get radiation in the abdomen area do have those problems). There are other side effects, but they are rare, so hopefully I won't have to think or talk about them at all. Dr. John said that the radiation beam will be going in at three places: one beam directed at exactly where my breast tumor was, another under my arm where the smaller tumor and affected lymph nodes were, and the last between my left shoulder and collar bone to treat the rest of my lymph nodes. So if I'm looking at the calendar correctly, I should finish with radiation treatments on May 28 as long as I don't have to skip any days because of illness, absence, or severe side effects. To complete the whole shebang, I will have to have surgery again six months after radiation is complete (to allow time for my skin to heal). This surgery will involve replacement of the tissue expander where my left breast was with a permanent silicone implant and placement of a much smaller implant on the right side so that my breasts will (hopefully) be even, both in size and in where they sit on my chest. Currently, the tissue expander sits much higher than my natural (right) breast, and it looks really stupid if I'm not wearing a bra.

In other news, about a month ago I made a new friend at the infusion room. She is also a breast cancer patient but started her chemo only recently (I guess about six weeks ago?). Her treatment is similar to mine but not quite as long and not as many drugs (her cancer was not as advanced and she is triple negative, which means that her cancer does not have receptors for progesterone, estrogen, or HER2NEU; my cancer is estrogen-positive, which is why I'll be on an estrogen-blocker for the rest of my life, starting with Tamoxifen for 5 years). The interesting coincidence is that she's a copyeditor, too, so we have lots to talk about besides cancer, which is nice. So a big shout-out to Amy, and thanks for the interesting chats :).

Kyle has, as usual, been very sweet; his good deed for the week (besides all that he always does) was making a delicious batch of chocolate peanut-butter chip cookies for me to take to chemo yesterday and share with all the caregivers who have been so good to me over the past six months: the receptionist, the phlebotomists, Dr. Krekow and Lisa (her P.A.) and nurses (though Sue was out yesterday), and the oncology nurses and staff in the infusion room. They all raved about the cookies, which I have said on several occasions are the best cookies I have ever had.

Other, noncancer-related news includes the acquisition of a new dog. This little guy, who we think is a papillon-chihuahua mix, followed Kyle home when he was out walking Lightning last Sunday. Kyle had him checked on Monday at animal control for a microchip, and they couldn't find one; furthermore, they told Kyle if he left the pup there, he would likely be euthanized because they are so overcrowded. So Kyle brought him back home and posted at Craigslist as well as several lost-dog online sites. We also made fliers that we posted all over our neighborhood, but no one has called. The dog is very sweet, very cute (solid black), and in really good condition. We are beginning to believe he was abandoned by someone who could no longer afford to keep him since no one has contacted us. We are trying to decide whether we can afford him; he will have to get all his shots and be neutered, so that's probably at least $300-$400 right there, plus all the future costs of boarding when we go out of town, vet bills, food (though he so small, he eats very little), etc. We've been thinking of getting another dog for some time, but we are so strapped for cash right now that it's going to be a difficult decision.

Gotta wrap this one up now; we are having a bunch of friends over for dinner and trivia or a movie tonight, so I need to go to the store for a few things. I hope all who celebrate it have a lovely Easter! Peace and love to you all, Jody.

It's 4 a.m. Why am I not sleeping?

2010-03-13T01:56:00.000-08:00

The title says it all, but I will expand a bit.

It's been so long since I've written here -- my apologies. I just got a bit tired of it, and there didn't seem to be much to say. And I did state from the beginning that I would write when I want, what I want. Now in the midst of my insomnia seems as good a time as any to dash off a post.

The Taxol treatment is going swimmingly. So far, most of my big right toe is numb as is part of that foot close to that toe. I have experienced no other numbness in my extremities, which I am very happy about and grateful for. [An aside: yes, it is perfectly grammatical and acceptable to end a sentence with a preposition; please don't think I don't know what I'm doing :). ] My hair is growing back, as you can see here. So far it is dark and straight. I'm not sure whether it's darker than it was before since I had lightened it for so many years, I really don't know what my natural color was. It's hard to tell just from roots. Other side effects are really very mild and easy to deal with. One is this unfortunate insomnia one day a week: Friday nights going into Saturday mornings, which is the time now. Evidently Taxol has a high incidence of allergic reactions, so they give me both oral and IV steroids as a prophylactic. The insomnia is thus a side effect of the steroids meant to prevent allergic reactions. As has been the case from the beginning of my treatment, I have side effects from the chemo, and side effects from the drugs to counteract those side effects. And yet more drugs to treat those secondary side effects. It's very difficult at times to keep it all straight. But anyway, my usual M.O. on Friday nights and Saturday mornings is to fall asleep around 4 or 5 a.m. and wake up by 9-ish. I then will commonly have a very full, energetic day, followed by sheer exhaustion and 9-10 hours of sleep Saturday and Sunday nights. So my whole weekend is not spoiled; I'm usually just more tired than normal on Sundays, which actually carries over into Mondays and Tuesdays. I have very little stomach upset or nausea, just some days/meals that I prefer to eat something light. I pretty much eat what I want: Indian food, Tex-Mex, Italian, lots of fruits and veggies and salads, etc.

One project that I was involved in last weekend was kind of interesting. The woman who took the pictures of Kyle, Lightning, and me contacted me a few weeks ago to ask whether I would be interested in working with her and a friend of hers on a breast cancer education project. She gave me some details, comparing it to "What to Expect When You're Expecting" but for women who have had a diagnosis of breast cancer: practical advice from women who have been there, things doctors and nurses forget or don't know about. I agreed to be a part of it, and last week went to have my picture made and be interviewed by Ann's friend, Angie. The theme is going to be "I Fight Like a Girl," and Ann Beck (the photographer) took pictures of all the participants with jeans, a white T-shirt, and pink boxing gloves. I think their plan is to start as a website and see if it grows into a book, although it's still very amorphous. I told them I would be happy to do their copyediting.

I don't remember and am too lazy to go back and look to see if I mentioned that Eric, Rafia, and I had a presentation accepted at the EDUCAUSE SW Regional Conference in Austin. This is an organization that is all about IT and technology in higher ed. So we went, and our presentation went well, I think (still waiting for feedback). Unlike 99.99% of presenters at any conference in the known world these days, we did not do our presentation in PowerPoint but chose to use a new product called Prezi. I had fun making it and learning the software; I highly recommend it. Anyway, the point of this paragraph that I am finally getting to is that while we were in Austin, I went by one of the tattoo places I had found online and talked with one of the artists whose work I had been impressed by on their website. I gave her an idea of what I want, and she said she'd totally be into doing the piece. I also asked her how much it would cost and was not surprised by her answer ($500-$600) but have thought about it since then and decided that we just can't afford that right now.

We must get our house sold in Michigan. If it doesn't sell soon, we are likely to lose what little we have left in our stock portfolio and have to do a short sale or default. So, we have lowered the price yet again, and it is now below what we owe. You can see the listing here if you like. If you know of anyone who is looking for a great house in a wonderful neighborhood in Rochester Hills, MI (or the northern Detroit suburbs in general), please send them the link to the listing!

I guess I should try to get to sleep now; I hope it will happen. Much love to you all. Peace, Jody.

Photos: New Year's Eve and WIGS!

2010-01-16T10:06:00.000-08:00

These first four above are from Gretchen's New Year's Eve Party. Rafia (the only other person besides me & Kyle in the pics) adores dressing up and brought boas for everyone. As I said, I was kind of tired before we headed out to the party and didn't bother putting on make-up or a scarf, so you can get a sense of how I look when I'm basically sitting around my house. The next few pics are obviously of me with my Fancy Hair :).

Happy New Year! What will 2010 bring??

2010-01-16T08:25:00.000-08:00

So we are out of the aughts, and into the teens. I do sincerely hope that this decade is better than the last. Looking back, there were some positives: I got married in 2000 to the love of my life; we had a couple of amazing trips (Caribbean Cruise, France, Africa); and I got my MLIS and my job. And while still trying to think positively, I can't help but think about the bad times, too: I lost two beloved pets, my cockatiel, Bisous, right after we got back from our honeymoon, and our sweet greyhound, Christmas, who dropped dead very suddenly in 2004 at the age of 8. I was pregnant once but miscarried at the beginning of my second trimester and then spent three years going through fertility treatment, up to and including IVF, all for nothing. Shortly thereafter, my mother died, August 22, 2004. Just when I thought I was getting over that, my sister collapsed and died with no warning, October 13, 2006. And of course, I was diagnosed with stage-III breast cancer in August 2009. So enough already! Let's get on with the good stuff :).

We had a very quiet but lovely Christmas. We ended up staying home and not going over to Monroe. We decided that trying to do both Monroe and Houston would be too much, and since we had just seen Paul at Thanksgiving, and I had last seen my Houston family in May 2008 (and Kyle hadn't seen them since October 2004), we would make a short trip to Houston. So we had a quiet Christmas Eve and Day, celebrating with our friend Rafia and as a last-minute addition, our friend Erin, who couldn't make it up to Oklahoma to be with her sister because of our weather. Yes, we had a White Christmas here in Texas -- a first for many natives. We spent a quiet weekend post-Christmas, then drove down to Houston on Tuesday for two nights with my cousin Shirley and her family (son Dean; his fiancee, Leslie; daughter Karen; her husband, Doug, and Shirley's sister-in-law, Carol). We had a scrumptious dinner at Shirley's house that first night, and another wonderful meal at Karen's the next evening. Shirley was kind enough to chauffeur us down to the Houston Museum of Natural Science, where we saw a gorgeous show, "Faberge: Imperial Jeweler to the Tsars." We also got to see some of the permanent collection, but sadly the butterfly garden was closed by the time we tried to go. Thanks again for a wonderful visit, Shirley, Carol, Dean, Leslie, Karen, & Doug!

We returned home on Thursday, New Year's Eve, and attended a pot-luck party that our friend Gretchen hosted that night. I was actually kind of tired and not really in the mood going over there, but ended up having a blast. We played Rock Band, which is always hilarious, and a trivia game that Gretchen got for Christmas. We ended up staying until around 2:00. Thanks, Gretchen!

The rest of my time off was spent being rather lazy, although I did make an exhausting (to me, anyway) shopping excursion the Sunday after Christmas. I wanted to use my Macy's gift cards that my in-laws had so generously given me for my birthday (thanks, Carol & Ger!) during the post-Christmas sales, so Rafia came along for moral support (thank goodness), and helped me choose a bunch of stuff, most of which I needed (jeans, kakhis, another hat), and some of which I wanted (a couple of beautiful pullovers that I got for under $10 each).

I returned to work on Jan. 4, so I've been back for two full weeks, but they have been rather quiet since classes don't start up until next Tuesday, Jan. 18. It's been nice to have some time to get caught up and geared up for the new semester. I already have lots of requests for instructions sessions from my regular faculty, and I just found out that a colleague from another program area in our library is leaving to take a position in South Carolina, so since he does a lot of first-year instruction, Gretchen (who is in that program area) asked me if I could help fill in for him, and I said that was fine. So it seems as though I will be busy this semester with a lot of instruction, a presentation at the end of the month to the UTA Black Leadership Conference (for students), another presentation in mid-February in Austin at the EDUCAUSE SW Regional Conference (I'm doing both of these with my office neighbors Eric and Rafia), and a paper the three of us are working on for publication.

My first go-round with the new chemo protocol, Taxol, was last Friday, Jan. 8. I am getting all the same premeds plus another one, a steroid called Dexamethasone that prevents allergic reactions (I guess Taxol has a high prevalence of allergic reactions, so they just give this routinely). Last week, my side effects were lack of appetite and sleep on the first day or two (the antinausea drugs slow down my digestive system and this leads to the lack of appetite, I believe, and the steroids are uppers). I also had, as usual, bad constipation from the antinausea drugs. But I did meet with my oncologist before that first administration, and she advised me to take a stool softener every day, like Miralax. So I started doing that regularly the next day, and once things got moving again around about Tuesday or Wednesday, I felt much better. (I know this is really gross to write about, but again, if someone else out there is going through the same thing, perhaps it will prove helpful to him or her.) The only other thing I was dealing with was fatigue; I had to go in late on Monday because I was so tired and brought my computer home that evening, with the thought that I would make up the time I missed that morning by working at home, but I was just too tired. At least I was able to put in about 6 hours that day, so all told, I missed about 10 hours that first week. Much, MUCH better than missing a whole week as I did with the last Big-Bad. And no nausea, no food-smell aversions, no horrible taste and smell in general. Again, I'm told the most common side effect than can become serious with Taxol is numbness in fingers and toes, which will probably come as the drug builds up in my system. I had the second administration of the drug yesterday, and so far, all my side effects are the same. I slept horribly last night; I turned off my light around 2:30 and think I finally got to sleep around 5:00, woke up at 9:30 and couldn't go back to sleep. Hopefully I will sleep better tonight.

The only other news I can think of is that I now have pink hair. And blue hair. I decided that I was getting tired of wearing scarves and hats; I wanted something more fun. So a friend had a blue -- and I mean NEON blue -- wig that she had gotten for Halloween, and she lent me that. I liked it so much that I bought a pink wig as well. I've gotten lots of stares, but also lots of compliments, so it's been kind of fun :). I will add another post with pictures of me in the wigs and other photos. For some reason, I can't figure out how to make a picture show up in a specific place in my text, such as HERE. They all just go at the top.

This afternoon, we are going to the Kimbell Art Museum in Fort Worth. I'm excited because I always love going to museums, and we haven't visited this one yet. It's supposed to have a fine collection, and the exhibit that's up now sounds really interesting. I think we are going to try to do the Fort Worth Botanic Gardens either Sunday or Monday as well (I have Monday off for MLK Day). We haven't done a lick of sightseeing since Kyle moved down last June, which is just plain silly and stupid because there are lots of wonderful things to do and see in the DFW area. So we decided to make this a sightseeing weekend :).

Must go and shower and eat some lunch to we can be ready to go by 2:00. Have a great weekend! Peace, Jody

Happy Holidays!

2009-12-19T09:35:00.000-08:00

It has, obviously, been a while since I've posted here. My apologies again to those who aren't on Facebook and can't keep up with me that way. It's much easier to jot off a short status update there to let you know how I'm doing rather than sitting down to right a blog post, which usually requires at least a solid hour or two. But I've got some time now, so here goes.

My last chemo was on December 3. And I mean "last" in two senses: most recent and final, at least for the Big-Bad Trio (Cytoxan, Epirubicin, and 5-FU). Since I've started on this regimen, I've often thought the shortened name for the last drug is rather fitting, as these drugs Eff-U up in at least five different ways. Get it, get it?? Heh.

In the days leading up to Dec. 3, I was getting really upset. Like, crying a lot. Two nights in a row beforehand, I spent sobbing, and the day of, during my appointment with my oncologist's physician's assistant (PA), I started crying and couldn't stop. I cried during the administration of the drugs, and the sweet nurse was so concerned. I told her I was so unhappy and upset at having to go through this again, even though it was the last one. I took a picture of the Epirubicin before it was administered. It turns my stomach to even look at it; I guess I'm now conditioned like one of Pavlov's dogs, but there it is on the upper left. This drug is in the same family as a chemo drug that's been used for years on breast cancer patients: Adriamycin. They are commonly called "The Red Devil" among those who have come to know them intimately, as I have.

I don't really know why I was so upset with this round. I know part of it was dread. HUGE dread at feeling so sick again for a week or more. I think part of it was also estrogen starvation and resulting hormonal imbalances. My body is being forced into a premature menopause, and I'm not responding well, emotionally. My PA, Lisa, suggested that I try an antidepressant, so I'm now on that. In any case, once they got the drugs in me, I calmed down; nothing I could do then but ride it out.

And honestly, in many ways, this last round wasn't too terribly bad. I kept myself well dosed with Phenergan and Ativan (antinausea drugs that also have soporific and antianxiety properties), so I slept. A lot. Like 16-18 hours a day from Thursday (administration day) through Monday. I started to cut back on the drugs Monday and thought I had enough energy to work on Tuesday, so I went in but had to leave by 1:00 because I was so exhausted and really out of it cognitively. I stayed home Wednesday as well and finally by Thursday, a full week after administration, I felt strong enough to work a full day. So really, my worst side effects this time were the usual lack of appetite and everything tasting and smelling awful, along with extreme fatigue. Oh, and the usual constipation and resulting excruciating spells in the bathroom.

So I'm told that the worst is over, that what I'm now facing is much easier. And just to refresh your memory, that is another twelve weeks of chemotherapy but with only one drug: Taxol. Supposedly, this drug does not have near the nausea nor the fatigue associated with it. Most commonly, it causes numbness in one's extremities. I am hopeful that it will be easier, especially since I have to take this drug once per week rather than once every three weeks, as has been the case with the Big-Bad Trio. So I will be out every Friday for three months starting on January 8th -- and yes, that is another HUGE bonus I got from the Good Nurse Sue -- a whole month off! After the Taxol, I will have radiation every day for 6 weeks (with weekends off).

I have put off the tattoo since I have yet to find a local artist who specializes in traditional Asian blackwork, which is what I want. I will continue to look here in the DFW area and in Austin; hopefully I can find someone.

I had a really wonderful birthday last weekend. My in-laws sent me a beautiful necklace they got at the Detroit Institute of Arts, along with gift cards for Macy's, so I'm planning a big after-Christmas shopping spree when the deals are really good. We went out to dinner the evening of my birthday with a bunch of my friends from work and their spouses plus three of their kids. We had a great dinner with lots of fun conversation and then went back to our house for a beautiful and delicious cake that Kyle made. My single girlfriends with no kids stayed and chatted with us until close to midnight when we all realized it was a school night, so they headed on home.

I just realized last week that I have about 10 days off in a row during the holidays. Our official university holidays are Dec. 23-25 and Dec. 28-Jan. 1; these are not days I have to take as vacation, just holidays. The library will be open on several of these days, and folks have volunteered to be there as a skeleton crew. I did not volunteer because at the time (way back in August, I believe), I wasn't sure what my treatment schedule would be. So once I realized that I would have all this time off, I started thinking about what we could possibly do. It was too late to try to get to Michigan, and besides, we've spent most of the past 10 years of Christmases there. I really wanted to be here in Texas for our first Christmas in our new home. So I think what we may do (we're still trying to firm up plans) is drive over to Monroe on the 26th and spend a couple of days with my brother Paul and then head home for one night so we can drop our dog Lightning at the vet for boarding before driving down to Houston for a couple of days with my cousins there. If all goes according to plan, we will head back home on the 31st in time for a party that my friend Gretchen is having at her house that night.

I can't really think of much other news -- oh, except for the fact that my hair is just *barely* starting to grow back. It's really not even visible at this point, but I can feel peach fuzz over many parts of my scalp that were completely smooth. There are still a lot of smooth patches, though, as well. I'm hoping that it will continue to grow or at least stop falling out as I start the Taxol. My eyebrows and eyelashes are almost gone, and I have to say that I look pretty damn bad with no makeup and no hair, so if I can't even put mascara on, I'm going to be very unhappy. I was chatting about this with a woman at my oncologist's office (a breast cancer survivor who was in for a check-up, I think, since she had all her hair and brows and lashes), and she said that when her hair started to come back, her lashes never did really regrow as thick as they had been before. She heard about a product called Latisse that she recommended I get. It's a prescription drug that was originally being used with glaucoma patients, but the developers of the drug noticed that it had a wonderful side effect: noticeable thickening and lengthening of eyelashes. So now it is a prescription that I can probably get through my plastic surgeon, but I'm guessing I will have to pay out of pocket for it, and it's around $120. I will wait and see how my lashes come back in; if I feel I really need it, I guess that price isn't too terribly bad.

So that's it for now. I hope you have a wonderful holiday season, however you may celebrate it. One of my favorite days during this season is the winter solstice; only two more days, and the sun will start to return to us here in the northern hemisphere! We've had a few cold spells here in Texas, but it has mostly been a beautiful fall with days in the 60s and even some 70s. The sun still feels so close and warm here, even now, and I am so thankful for that. I'm also incredibly grateful to my friends, in-laws, cousins -- all who love me and who have shown such steadfast support for me. I, in turn, send my love to you and wish you joy, laughter, fun, and love during the holidays. Peace, Jody.

Tattoo You

2009-11-29T16:18:00.000-08:00

The title for this post was taken from a Rolling Stones album that came out in 1981. I've never been much of a Stones fan, but since the album is from the year I graduated high school and since I'm going to talk about tattoos, I guess it's at least tangentially appropriate.

My last Big-Bad is coming up this week, December 3, to be exact. My birthday is 10 days later, December 13. I'm thinking I want to get a tattoo for my birthday. Specifically, I want to get a design that symbolizes survival since I will have survived the first stage of my breast cancer treatment. I would like, I think, to get something that I can add on to at each stage of treatment and survival that I reach: when I finish Taxol, when I finish radiation, when I finish breast reconstruction, when I reach 2 years, 5 years, 10 years, etc. (assuming I make it that long). I have already checked with the Good Nurse Sue, who told me that as long as my white counts are good when I get the tattoo, she has no problem with it. I've also already checked with my supervisor, Suzanne, who tells me that the library does not have a policy banning visible tattoos. I'd like to get it on the inside of my right forearm, I think, perhaps wrapping around my arm; I also want black work. When I first started to think about this idea, I did a simple Google image search on "survival symbols," and one of the first things that popped up was bamboo. This page was one of the first I looked at, and after many hours of looking at other pages, I still like many of the images here best. Never having gotten a tattoo, I have no idea whether a competent ink artist could adapt one or more of these images into something that would look good going up the inside of my forearm or wrapping around my arm. The reason this page came up in my search is because of these words on it: "Bamboo, because it is flexible and can withstand storms without breaking, is a symbol of survival in adversity." I like that.

I have also thought about doing some sort of saying in Elvish from J.R.R. Tolkien's "Lord of the Rings". I believe I mentioned this somewhere on Facebook, but I don't think I've talked about it here. I've read that people who personify their cancer and visualize something killing it often fare better than those who don't. So when I've tried to visualize my cancer, I have thought of the Nazgul from LotR, and I've thought about Arwen saving Frodo in the first movie, which I watched again just last night. When I'm in the throes of a Big-Bad, I feel just about as bad and helpless as Frodo does after he's stabbed by the Nazgul, and I probably look almost as bad. When Aragorn, Sam, Merry, Pippin, and Arwen are doing everything they can to save Frodo, it's like Kyle and my friends supporting me, as well as the medical team treating me. But Arwen riding off to Rivendell with Frodo and managing to outride and drown the Nazgul -- that scene is absolutely riveting to me (made me cry last night) and is what I imagine when I try to visualize beating this cancer. So that's why I've thought about either a saying in Elvish or an Elvish design from the book. Maybe I need to pull out my copy of the trilogy and see what it is that Arwen actually says in that scene to make the waters rise (if it's even in the book).

These are the two ideas I've had so far. If you have an idea that you think might appeal to me, I'd love to hear about it. My friend Eric suggested some sort of design from World of Warcraft, but I can't really think of anything from there that I'd want to live with and look at for the rest of my life.

So far, in trying to research artists in the DFW area, I have found the following (some are in Austin; if I chose to work with one of these, I'd have to wait until next February when I will be in Austin for a conference). If you know anything about these or other artists that I haven't found yet, I'd be grateful for any info you can provide. I obviously will be living with this ink the rest of my life and want to be absolutely sure that I am working with someone who is not only a great artist (i.e., does a LOT of custom black work) but whose shop is also known to be clean, clean, CLEAN. The problem with most of these is that they all seem to specialize in color.

Elm Street Tattoos (Dallas)

Perfection Tattoo, Chris Trevino (Austin)

True Blue Tattoo, esp. Rachel (Austin)

Rock of Ages, esp. Hector (Austin)

Diablo Rojo, esp. Raul (Austin)

Psycho Clown Tattoos (Fort Worth)

Randy Adams (Fort Worth)

Thanks in advance for any advice or ideas you may have.

As for the past week, I am SO VERY thankful that it has been blessedly almost side-effect free. Everything I discussed in my last post is either entirely resolved or almost gone. I had a horrible day on Wednesday with seasonal allergies, but that obviously has nothing to do with chemo. They seemed to improve on Thursday and now I've just got a few sniffles here and there. I have NO mouth sores, which is simply amazing. I don't know what's working right, but whatever it is, I hope it repeats itself next cycle.

We had a really wonderful Thanksgiving. My brother, Paul (who is technically my brother-in-law but is my brother in my heart), came over from his home in northeast Louisiana on Wednesday afternoon and spent Thursday with us. He had to leave early on Friday for a family reunion near Bryan, TX, but I was so happy to see him and get to spend some quality time with him! Of course, we all missed my sister Ann, who died in October 2006. We were also lucky enough to have my friend and colleague from work, Rafia, come over to join us for a completely nontraditional Thanksgiving meal of grilled New York strips, cheesy potato casserole, squash, green salad, asparagus with garlic/lemon sauce, and for dessert, homemade chocolate ice cream. Rafia brought her Wii, and we played lots of games after dinner, and I laughed until my stomach hurt. A good kind of hurt, though :).

I hope you are well, warm, safe, and happy. Peace, Jody.

Side Effects Circus!

2009-11-21T10:58:00.000-08:00

My last update was almost a week ago, on a Sunday. That Monday, I was still feeling pretty bad, so I stayed home, but I did manage to work most of the day. Part of my job is to maintain and update all the webpage subject guides that I am responsible for, and there is always something that needs to be done to them, so I spent most of the day working on them. You can peruse them here if you are interested.

So I've heard some people describe this blog as "gutsy" and "honest." I guess that's a good thing? I'm going to warn you now that I'm going to honestly and openly describe some very icky stuff in this post having to do with side effects. I decided to talk about these issues (even though some are very private) not necessarily because I want everyone I know to know about them, but because maybe someone whom I don't know is reading this blog and is going through the same things I am and will not feel so alone. Or perhaps someone getting ready to start chemo will be more prepared for what might happen. If you don't want to know about these issues, you may want to skip the rest of this post.

I went back to work on Tuesday, still feeling very fatigued and just kind of not well. At least by this point, the extreme body aches/soreness had abated. At its worst, this side effect felt like someone had beaten me about the body with a baseball bat, more than just muscle soreness, sort of a very bruised feeling, mostly throughout my torso and up into my neck. When I went in for my weekly lab work this past Thursday (my counts were very good, btw), I asked the Good Nurse Sue about this problem since it was new for me. She said it is not an uncommon side effect of chemo; she also said it could have been that my white counts dipped really low very early and the Neulasta kicked in at that point (this drug has the common side effect of causing bone aches when it starts working because it stimulates one's bone marrow to produce white blood cells). Since the soreness was centered so heavily between my ribs and hips, I was concerned that I might be experiencing liver problems (obviously, one's liver is heavily stressed by chemo), and I asked Sue about that. She responded that they do not test for liver function during the normal weekly lab work (which is just a simple CBC), but they do perform a complete panel that looks at liver function with the lab work that is done just before one gets a chemo treatment. So if there were any problems with my liver, they would have shown up Thursday a week ago before I got my chemo. And they didn't. Whew.

At the point that I started to feel systemically human again, which was around Monday or Tuesday, I started to get other side effects that were local. Sadly, the bleeding and extreme pain during bowel movements came back. Also, the skin in my private parts (front to back) became very inflamed and painful and was sort of oozing/weeping a small amount of blood pretty much all the time. This started on Monday and was very bad for the next two days. It had started to get very slightly better by Thursday, but I made sure to tell Sue about it when I was in for my lab work. She immediately told me to drop drawers so she could have a look (an aside: you know you're not exaggerating your own systems when an experienced oncology nurse has a sharp intake of breath upon seeing a problem, which was the Good Nurse Sue's reaction). She said it looked like a fungal infection and told me she would give me a prescription for a cream that would help. She also prescribed a suppository containing steroids for the internal problem(s). The external cream gave me almost immediate relief; the redness is still there, but the bleeding has stopped, and it's not nearly as painful. The internal problem is a bit better, but not much. I'm hoping that it's just an issue with this type of medication taking longer to help. From what I've gathered on the Internet, this type of fungal infection is not uncommon in people with compromised immune systems:

The most common organism implicated in fungal infections is the ubiquitous Candida, which is found in the human digestive tract, mouth, and genital region (Eggiman P et al 2003). Under normal circumstances, levels of Candida are controlled by beneficial bacteria. However, if the bacteria-fungus balance is upset, by the use of antibiotics for example, or if the immune system is compromised, an overgrowth of Candida can occur, resulting in infection (Braunwald DE 2001).

The other problem I've been having is a very painful feeling that food is getting caught at a point in my esophagus that's in the middle of my chest area. It's especially bad when I eat anything dense, such as bread or red meat. This is actually a problem that I've had for years, but it's been really exacerbated since I've been on chemo. I told Sue about this issue as well, and she gave me a prescription for a heartburn/antacid medication. I've been taking it since Thursday, and it's really helped.

So those who talk about very unpleasant chemotherapy side effects from mouth to anus are not in the least exaggerating, I can now attest. I got some more information here:

Mucositis (also known as stomatitis) is the swelling, irritation, and ulceration of the cells that line the digestive tract. These cells reproduce rapidly and have a shorter life span than other cells in the body. Because chemotherapy agents do not differentiate between healthy cells and cancer cells, they can quickly destroy digestive tract cells, breaking down the protective lining and leaving them inflamed, irritated, and swollen. Mucositis can occur anywhere along the digestive tract from the mouth to the anus, and can be aggravated by nausea and vomiting.

I hope this information hasn't been too disturbing for you to read. It's difficult for many people to talk about and deal with honestly, so that's all I'm trying to do.

Other than dealing with all these side effects, it's been a pretty good week. I enjoyed being back at work and feeling productive. Sadly, one of my colleagues has been out sick all week and will be out next week as well (Get Well, Anne!), so I've been doing a lot of extra shifts on the reference desk, and enjoying them all. We are very, very busy right now; so many students have research papers due now before the big bang that is final exams. I haven't felt like being on Warcraft at all, which I am missing, but maybe this evening I will get a some time to play and actually feel well enough to be on (I find that when I'm even slightly nauseated, the game can make that feeling much worse; it must have to do with its immersiveness and the motion on the screen).

I hope you are well, loved, warm, and happy. Peace, Jody

Second to Last of the Big-Bad

2009-11-15T09:14:00.000-08:00

Wow, have I been a slacker! It's been just over two weeks since I last posted here. I know that most of you keep up with me through my Facebook status updates, so you aren't too much in the dark. For those not on Facebook, SHAME :)!

I am so SO proud of my coworker and friend, Kathleen. She and her cousin Denise successfully walked the whole 60 miles for the Komen 3-Day last weekend. The bottom picture here is of the two of them (Kathleen is on the left). They said it went fairly well, and they weren't even really very sore. Kathleen got one little blister and that was pretty much it. She and all of the walkers in this event and others are true heroes! The other heroes are those of you who pledged money for Kathleen's efforts. I thank you one and all.

I continue to receive extraordinary amounts of care and kindness from friends and coworkers and family. Two of the librarians in my group, Helen and Carol, like to sew and told me that if I would go pick out some fabrics, they would make head scarves for me. Helen brought hers in last week, and I must say that she went way above and beyond (just volunteering to do this was way above, etc.). One of the pieces of fabric that I bought was cut too crookedly for her to work with, so she took it back to the store and got three more pieces. All of the scarves are beautiful, and it's so nice to have a bigger selection!

More random acts of kindness: The head of access services at my library, Sue Sappington, brought me a lovely package -- some foot cream and lip balm and snuggly footies, as well as lots of information from the ACS. And Kyle's Aunt Arlene sent me the newest John Irving book; it was so thoughtful of her to remember that he is one of my favorite authors.

My health and well-being have been up and down since I last posted, of course. I had the usual problems with mouth sores, except this time I had five big ones instead of just two. Just at the point that they were getting really bad, the Neulasta kicked in, and they went away almost overnight. The other problem I had was new and freaked me out quite a bit: lots of bleeding during bowel movements (well, it seemed like lots to me). Of course, the first time this happened was on a weekend, and I didn't really want to disturb the doctor on call, but I wasn't warned that this was a normal side effect, and when I looked it up on the Internet, every credible source I found advised calling the doctor immediately, so I did. The doc on call asked me some questions to rule out anything really serious and concluded that it was just the mucus membranes there were irritated, like the skin inside my mouth. He said to call and speak with my regular nurse the next day, which I did, and the Good Nurse Sue came to the same conclusion. When the Neulasta turned itself on a few days later, the bleeding stopped.

So I had about 4 days at the end of my last cycle during which I was feeling pretty damn good -- not too tired, no mouth sores, no nausea, etc. It was wonderful!

Last time I wrote, I said that my protocol would change as follows: see Dr. Krekow on Tuesday, have chemo admin on Thursday with no Emend, and then go back on Friday for the Neulasta injection and IV steroids, antinausea drugs, and Ativan. That is pretty much how things went this week with one exception: Dr. Krekow did keep me on the Emend. When I saw her on Tuesday, she explained to me that she has five (maybe six?) families of drugs that she can use to combat CINV (chemotherapy-induced nausea and vomiting). I will try to list a representative example of them all: Ativan (anti-anxiety that also controls nausea), Phenergan (antinausea that blocks signals from the stomach to the brain), Emend (antinausea that blocks signals from the brain to the stomach), steroids (antinausea), and . . . hmm, I have forgotten the others. Chemo brain.

I had to teach a class Thursday morning, but the timing worked out perfectly; the class was from 9:30-10:50, and I had to be at the oncologist's office at 11:45 for chemo admin. Kyle came to work with me and sat in on my class. The only thing he said about it was how surprised he was that these students were taking a senior-level class, yet many of them had never used the library's databases to do research. It didn't surprise me; I see it all the time. Studies have shown that 80% of all college students (not just freshman) turn first to Google when given a research assignment. While Google does wonderful things, it most often cannot get you to the full text of scholarly articles. But I digress.

Kyle dropped me off for my treatment, and he went to get some lunch for himself. After he ate, he stopped at a great deli and got a sandwich and chips for me, which I ate while getting treatment. We headed home around 2:30 and both crashed from 3:00 to 7:00 or so. Kyle got up and made a pot of delicious chicken soup (yes, from scratch), and we had that for dinner. We went back the next day for the Neulasta and more IV meds. I told Kyle he didn't have to hang around while I was getting my treatment. It's so boring for him, and the chairs for visitors are uncomfortable. So he toodled around and happened to find the Harley dealership. When he came back, he had a present for me -- a really cool, black, knitted skull cap with little rhinestones all over it. I'd been wanting a hat like this, and he knew it. How thoughtful is he??!

Yesterday, I woke up with a bit of nausea, but I was able to eat a banana and some yogurt. A couple of hours later, I was feeling very nauseated but I thought if I ate, it might help. So I had a couple of scrambled eggs and some toast. Still felt bad. At that point, I was like, screw this, I'm going to take whatever I can that will help. So I took a Phenergan and an Ativan -- this on top of the Emend I took when I woke up. Within 15 minutes, I was about to pass out -- I couldn't even see straight. I had laundered the bed sheets that morning but hadn't yet made the bed, so I asked Kyle to do it. I don't think I could have gotten the sheets on that bed if I had tried. I collapsed in the bed as soon as it was made and slept from 2:30 until 7:30. I felt a lot better when I woke up and had a dinner of chicken soup, toast with hummus, and a salad. We watched Buffy all evening and I took another Phenergan/Ativan combo before going to bed; slept from around midnight until 10:30 this morning. When I woke up, I took another Phenergan. I have simply decided that I'd rather be drugged into a stupor than nauseated :).

My only real discomfort right now is that I am sore all over for some reason. Like I had a really intense workout at the gym in which I stressed every single muscle in my body. The only thing that I can figure is that this is a chemo side effect that I haven't yet, for whatever crazy reason, experienced, OR it's because I'm sleeping so much that I'm stiff. The problem with the latter theory is that the soreness doesn't go away after I've been up for several hours. But as I just told Kyle, the soreness doesn't bother me if I sit still, whereas the nausea is unrelenting when it's hanging around.

I have to say that I am really getting sick and tired of being sick and tired, so I am glad this is my third big-bad chemo treatment. Just one more like this, and then I start on the Taxol once a week for 12 weeks. Although it's still chemo, Taxol is supposed to be not nearly as difficult to deal with. The only common side effects are numbness in one's extremities, especially fingers and toes. I ran into a woman at the closing ceremonies for the Komen 3-Day who was just finishing her chemo, and she said that she lost a couple of toenails from the Taxol. Ugh. I hope I will be able to type; if I can't, I don't know how I will do my job. I guess I will deal with it if/when it happens. But I'm told that my hair should start growing again, and I won't have the nausea or mouth sores anymore.

That's about it for now. I hope you have a lovely Sunday and a wonderful week ahead. Peace, Jody.

Devil's Night

2009-10-30T18:50:00.001-07:00

Devil's Night is what they call Halloween Eve in Detroit. The devilry used to get pretty bad up there, to the point that people died from random violence or fires. It never was that bad when we were there, mostly just mischief.

We had a fun gathering at work today, a brunch potluck that my program area hosted. Technically it wasn't a Halloween party, but several of my coworkers came in costume. Suzanne was a rapper/playa, Rafia was Dr. Horrible (with a lab coat that said "She blinded me with library science" on the back, ha!), and Eric was BJ Honeycutt from M*A*S*H* (bloody apron and martini included).

I had my usual lab work done today. And drumroll, please! Here are the numbers:

WBC: 4.2

NE#: 2.9

RBC: 3.73
HGB: 12.2

Everything's fairly low but still acceptable. I again spoke with Sue. OK, let me back up.

My last blog post ended on a fairly positive note; I wrote it on the Sunday after my last chemo treatment, and I wasn't feeling bad. Not great by any means, but not bad. I got up on Monday and had no more Emend, so took my Zofran. Felt worse and worse as the day wore on. I had to go in for a Neulasta injection and told Sue how bad I was feeling. She said to use the HAB cream even if I wasn't vomiting since the nausea was becoming really, really bad. I tried it when I got home and felt a bit better, but it didn't last. The nausea just came screaming back that night; it was with me most of Tuesday, too. I had to teach a class that evening and just felt like I was babbling. Came home and could not eat more than a bit of salad. I woke Wednesday and took my meds as I should have all day (I missed my second dose on Tuesday) and felt a bit better. Finally, by Thursday (yesterday), I was able to go the day without any nausea meds and without feeling nauseated. Whew.

I can't really describe the nausea, except to say that it feels unrelenting; it was almost intolerable by Monday evening. My teeth and jaw hurt from clenching so much, which I guess is a normal reaction for me. I tried some deep breathing exercises but they didn't help. And everything, EVERYTHING smelled awful, which I'm sure didn't help.

So that was my week, and I talked to Sue about it today. I asked her whether it was the Emend that really didn't work the way it should (even though it controlled the vomiting) or whether it was just bad because it was my second round, and the chemo drugs are building up. She said that she thought that the Emend just didn't do the trick. So we are trying yet another protocol. For my next treatment, I will go in on a Tuesday to see Dr. Krekow and get my labwork done (because that was the only day she could squeeze me in with the doc), and then I will go back on Thursday for my chemo treatment, which will be exactly as it has been except no Emend. Then the next day, which would have been my chemo day, I will go in for the Neulasta injection and they will put me on IV antinausea meds again -- the same stuff I normally get right before my chemo. So I will have IV antinausea meds both Thursday and Friday this time. We shall see how it works out . . . .

OK, so that's about all the news I have for now. I hope you have a fun, wacky, cool Halloween! Peace, Jody

Chemo: Round 2

2009-10-25T10:52:00.000-07:00

I had my second dose of chemotherapy on Friday, October 23. Before I actually got the chemo, I met with Dr. Krekow's physician's assistant (PA), Lisa. (This is the same person who did the genetic counseling with me before they did the genetic testing.) She spent some time asking me about all the problems I had had with the first dose, and I went over them in detail with her. The one thing I forgot to tell her about was the emotional low that I hit at the end of week 2. I will ask Dr. Krekow about that next time if it happens again (Lisa and Dr. Krekow alternate seeing patients on chemo days). Lisa told me that we were going to stick with our plan of taking the Emend, and she asked me if I wanted the HAB topical cream as well, and I said yes, since I was skeptical that the Emend would actually work. She also told me that because my WBC got so low last round and the mucositis was so bad, they are going to give me an injection of Neulasta, a medication that stimulates the bone marrow to produce white blood cells at that critical point when counts start getting very low. Neulasta's website is crap -- they don't explain how the drug actually works. Here is a better explanation I found:

Chemotherapy often decreases the bone marrow's ability to produce neutrophils, a certain type of white blood cell (WBC). Neutrophils help protect the body from infection, and having a low neutrophil count (known medically as neutropenia) increases the risk of infection. Neulasta belongs to a group of medications called granulocyte colony-stimulating factors. Colony-stimulating factors bind to stem cells in the bone marrow, stimulating the production of blood cells. Granulocyte colony-stimulating factor (G-CSF) is a naturally occurring chemical in the body that stimulates the production of neutrophils. Neulasta is a synthetic version of G-CSF attached to another molecule designed to make it stay in the body longer. This means that it needs to be injected only once per chemotherapy cycle. Neulasta binds to stem cells and stimulates the production of neutrophils, helping to decrease the risk of infection. (from here)

So I will get this injection tomorrow, and hopefully it will prevent the neutropenia (low neutrophil count) that I had last time, which caused the mucositis.

Here are my counts from Friday:

WBC: 5.2

RBC: 4.32

HGB: 14.0

The report they gave me was different from earlier ones and did not have the neutrophil count; it does have something called "Seg %" that's listed as being 40, and I think the nurse who was administering my chemo said that was the most important number, and it was good. My RBC is still a bit low, but everything else looked fine.

So I went to the pharmacy that they have on site to pick up the Emend. It came in a bubble pack with three pills, and the cost was $385, but for some reason I had $0 copay. Perhaps it's considered part of my chemo regimen and thus no copay? I don't know, but I was happy not to have to pay anything for it. I took my first pill after sitting down to wait for the chemo, which was somewhat delayed because the lab was backed up and my bloodwork results were not ready. Kyle went to get the HAB topical cream prescription filled; he also had some lunch.

I ate lunch when we got home and then took a nap for a couple of hours. I was still feeling queasy, very much so, in fact, but did not actually get sick. I asked Kyle to get out our juice extractor that we had never unpacked and make me some carrot/apple juice. I drank that for dinner and we watched several Buffy episodes.

Yesterday, I slept late and still felt queasy when I woke up. I took my second Emend pill, and felt better after a bit. I asked Kyle to make some scrambled eggs and toast for me. I had that with a yogurt and again, was NOT SICK! At this point, I was beginning to believe that the Emend was going to work. The true test came last night. We had pork chops, mashed potatoes, and broccoli for dinner. I got pretty queasy with the cooking smells and was afraid I wouldn't be able to eat, but once I had the plate in front of me, I started eating and it tasted pretty good, so I was able to finish all of it. Yay! We watched more Buffy and I went to bed about midnight and slept until 11:00 this morning. I took my third Emend and made myself some scrambled eggs and toast and am feeling pretty good now.

Let's see, what else has happened since I last posted? Oh, the mucositis did start to improve by Monday. The sores were still there, but not as severe, and by Friday, I was able to eat a pizza and salad. Woot! On Thursday afternoon, I saw Dr. Heistein, who took a look at my tissue expander, comparing it to my natural breast, and said that I would need at least one more fill. I talked with him about what I wanted for an eventual outcome and said offhandedly that we had lots of time to figure all this out. And he said, "Well, we have to be done before you start radiation. You can't have any more fills after that. AND radiation will affect your tissue expander in that it will cause it to shrink somewhat, how much we don't know." I didn't know any of this. I probably was told before and had forgotten, but Kyle said he didn't remember hearing this before now either. So I got another 60 cc's that day. Boy, was that a mistake. Dr. Heistein asked whether I wanted 60 or 30, and I opted for 60 with the hope that I could reduce the number of times I have to drive over to Fort Worth again. BIG mistake. I was in so much goddamned pain that night. I took three muscle relaxers, and they barely touched it. I was in more pain than the day after my surgery. I'd put it at an 8/10 on the pain scale. I barely slept that night and so was very tired when we went in for chemo the next day. I was having an extremely hard time moving because it was very unpredictable which movements would cause a spasm in my extremely overstretched chest wall muscles. I am still very, VERY sore, but doing better. Dr. Heistein wants to see me again in two weeks; he's thinking another 30 cc's will be enough, but I'm not sure. I'm thinking I'd like to get an implant on the right side, just to lift that breast a bit so that they won't be so lopsided (the reconstructed breast will sit much higher than my natural breast). Dr. Heistein says that the minimum size implant I can get is 100 cc's, so the tissue expander must be 100 cc's larger than my natural breast is now, and I don't think we are at that point yet. Anyway, all this must be done and settled by the time I start radiation, so we do still have about 9 weeks yet. What is most definitely decided in my mind is that I WILL NOT BE GETTING ANY MORE 60-cc FILLS! At most, 30 cc's from now on.

That's about it for this week. So, as usual . . . . Peace, Jody.

My Lap Quilt and My Shorn Head

2009-10-17T23:16:00.001-07:00

As promised, pictures of the gorgeous quilt. And for the curious who aren't on Facebook, pictures of me with my head shaved.

A Bunch of Complaining + Presents

2009-10-16T17:32:00.000-07:00

It's looking like Friday nights are becoming my regular time to post. I remember when Friday nights were my regular time to party. Good lord, what a depressing thought.

I was curious to see what my numbers were today compared with last week because I've been feeling very run down. Not necessarily run down as in tired or sleepy all the time, just kind of blah. Not much energy or enthusiasm for anything. I've also been very emotional, crying at the drop of a hat, which I assume is due to my general run-down-ed-ness? If you've been on chemo before, let me know if you had that reaction.

So just so we can compare, here were my numbers from last week:

WBC: 3.5 (low but still OK)

NE #: 2.3 (I'm not sure what this is, but Sue said 1.5 or more is good)

RBC: 3.98

HGB: 12.9 (less than 10 is bad)

And here is this week:

WBC: 2.7

NE #: 0.5

RBC: 4.19

HGB: 13.4

No wonder I feel like shit. And I found out what the "NE" is: neutrophils, evidently a special type of white blood cell that make up "an essential part of the innate immune system" that I have almost none of at the moment. And some asshole at the oncologist's office was coughing in front of me in the waiting room just outside where they draw blood. A very tiny waiting room. And he was a visitor, not a patient. What a fucktard. (This is the point in the blog where I'm likely to lose those who are offended by the F word -- sorry, but I said from the beginning that I will write how I feel, and that is how I feel about that man.) Anyway, the good nurse Sue said that I am about where they expect me to be and not yet in need of antibiotics or other boosters.

Sue and I spent some time talking about my latest side effect: mouth sores. I don't know exactly when these started but I think it's been at least a week. I have one on my tongue, right at the tip, and one way back on the roof of my mouth. They were just slightly annoying at first but have gotten progressively worse over the past few days to the point that I called Sue on Wednesday and asked her what we could do. She called in a prescription for a liquid that I can swish in my mouth; it's composed of equal parts of lidocaine, antacid, and Benadryl. It helps, but only for a short time while my mouth stays numb. I'm finding it harder and harder to eat and swallow -- the sore on my tongue makes it painful for me to move the food around in my mouth as I chew, and the one on the roof of my mouth has inflamed that whole area, making swallowing painful. I've been eating soft foods for two days now, and that helps, too. Sue gave me some other suggestions today, all OTC and/or homeopathic remedies. She said if I haven't seen any improvement by Monday to call her and she will ask Dr. Krekow if there's anything else we can try.

I also asked her about the new antinausea med I will be on next week; it's called Emend. There's a very informative video at that link that explains what it is and how it works, but if you don't want to watch it, here's what they say about how it works:

How is EMEND different? Most drugs designed to prevent chemotherapy-induced nausea and vomiting (CINV) block the nausea signals from your stomach. But chemotherapy can affect both the stomach and the brain. So even when the stomach's response to chemotherapy is blocked by medication, the brain's nausea signals can still make a patient feel sick or vomit.That's where EMEND can help.EMEND blocks the vomiting signals from the brain, rather than the signals from the stomach. So when EMEND is used with other drugs that block the stomach's nausea and vomiting signals, you can get more complete protection against nausea and vomiting.

I will start on this drug as soon as my butt hits the recliner in the chemo room next Friday; because it takes about an hour for them to administer the premeds and an hour before chemo is what Emend needs to do its thing, it should work out. I will stay on Emend all weekend, with it working in conjunction with the long-acting antinausea meds I get via my port, and then I will switch to Zofran or Phenergan as needed. Sue has also gotten approval for me to get that topical cream (Haldol/Benadryl/Ativan mix) that I mentioned last week. So I'm really hoping that with all this, I won't have a weekend full of vomiting like I did last time.

I still have my hair, but not for long. It's really starting to come out. I find myself dreading the shaving bit, but it's getting depressing to touch my hair and see/feel it come out. For example, today I grabbed a lock of hair that was hanging in my face and bugging me, just meaning to push it back, and it all came out. And I didn't really pull it at all. I think I just need to bite the bullet and go ahead and shave it tomorrow. It will be hard at first, but not so upsetting in the long run, I think. Maybe.

I got another fill in my tissue expander today. I asked the nurse how many more I would need, and she said that would depend on me and how big I want to be. I asked her if Dr. Heistein was in (the nurses always do the fills), and she said no, so I made an appointment for next week when he will be in so I can ask his opinion. I really hope next week will be the last one. Right now I have the odd and not very pleasant sensation of having a compression plate on the left side of my chest, both front and back, as though someone's put squares of plywood there and is clamping them together. I suppose it's just because the muscles are so damned tight from being so stretched.

OK, I feel as though I've done enough complaining. I will end on a pleasant note. Yesterday was my day to get presents! Who knew? And what a surprise :). I had a call from my colleague at the library, Lea, who works in Special Collections and who is also a breast cancer survivor; she and a friend of hers had made a quilt for me. So I went up to get it and met her friend Elizabeth -- what a lovely lady! She's 80 years old, and I guess making quilts for cancer patients is something she enjoys because she and Lea also gave me a book: The Quiltmaker's Gift. It's a children's book about how much better it is to give than receive, and they inscribed it "Wrap yourself in friendship with this quilt. The Philosophical Paleontological Quilting Society. Elizabeth and Lea" (it seems they enjoy discussing those subjects while quilting; maybe I will get smarter just through using it??) I was incredibly touched. And the quilt is very beautiful; I will post a picture of it here soon. So if that weren't enough, I got home and saw two large shipping boxes in the living room. I asked Kyle what they were and he said he didn't know; they were for me. I opened them up and found a gorgeous, very large pink scarf with "LOVE" sort of embossed all over it and a beautiful pair of pink pajamas. The sweetest part was the note: "Jody--Hugs, Prayers, and Strength from Michigan! Jamie, Linda, Ann, Kathy, Deb Brasile, Mary Peteui, Pam P, Jackie, Lisa S, Mary B, Carol V, Pam M, Julie S. Love from all of us!" These are my sweet coworkers and friends from Williams-Sonoma where I worked for seven years. And now I'm crying. Again. I will send thank-you notes soon, but in the meantime, THANK YOU ALL for the generous, gorgeous, thoughtful gifts but mostly thank you for the love that is expressed in them. Peace, Jody.

End of Week One on Chemo

2009-10-09T18:37:00.000-07:00

For those of you not on Facebook, I'm sorry to keep you waiting for an update. I was really REALLY weak on Sunday and Monday, but the nausea did subside slowly on Sunday. It slid into an uneasy queasiness on Monday, at which point I started trying to eat again. I'm sure a lot of the weakness was due to lack of nutrients; the rest was just sheer exhaustion from vomiting so much. I was feeling much better by Monday night and decided to work on Tuesday. I went in a bit late but stayed until my normal time and was able to work full days the rest of the week. Yay!!! I'm very happy to have the sick leave pool to fall back on, but I really do want to be at work as much as I can.

I said I worked full days -- that was except for today as well because I have to go in to Dr. Krekow's office every Friday for lab work. They did a CBC and I waited for the results. They didn't mean much to me, but Sue explained these numbers (I'll put them here for those who are truly curious; I also know at least two of my friends, maybe more, who read this blog are health care professionals):

WBC: 3.5 (low but still OK)

NE #: 2.3 (I'm not sure what this is, but Sue said 1.5 or more is good)

RBC: 3.98

HGB: 12.9 (less than 10 is bad)

There was a lot more, but that was all I got an explanation for. I will make sure to get more info next week. Basically, Sue seemed happy and said that I didn't need any medication for now to boost my counts. I also talked to her about an article I found online about treating chemotherapy-induced nausea and vomiting (CINV) with a Haldol/Ativan/Benadryl cocktail, but instead of it being administered via suppository (which, frankly, is kind of icky but also the doc last weekend said it can cause irritation and infections), it was done via topical cream to the wrists. The article is here if you want to read it, or at least look at the abstract. I had faxed this article to Sue a few days ago, and she said she got it and had given it to their pharmacist to see what s/he thought. She also said that next time I have chemo, they are trying another oral antinausea med. I will take it on the day of the chemo before they start the drugs and continue it for 3-4 days; this med will be in place of Zofran (and I assume Phenergan). She said it's stronger than both. The on-call doc last weekend (whose name is actually Dr. Coyle, I learned today) said that Phenergan and Zofran were the strongest out there, so she either didn't know what she was talking about, or she was blowing smoke up my metaphoric skirt. I suspect the latter.

I also asked Sue about one particular minor but still very annoying side effect: my face is breaking out like crazy. I have had mild to moderately bad acne my whole life, but I had been doing really well since moving here; I think the climate just agreed much more with my skin. So I had stopped using my prescription topical meds (Differin, BenzaClin). She said to start using them again, which I had already done a few days ago, but she said there's not much to be done beyond that. She doesn't want to put me on oral antibiotics just for acne. I'm guessing she's afraid that I might build up an immunity to the antibiotic and then it might not work for something more serious.

The other thing I noticed in particular today is that my scalp was hurting a bit when I washed my hair this morning. Sue had told me that many people feel that way when their hair is getting ready to break off, so I'm assuming I won't have my hair for much longer. I can't remember whether I've said it here yet, so I'll say it now. I'm not putting up with any half-assed, super-thin, raggedy-looking bullshit for hair. When it starts to go, Kyle is shaving my head. I will likely wear bandanas, scarves, skull caps, or nothing if it's not too cold. Oh, and I have a cowboy hat that was my sister's! October is breast-cancer awareness month, so if I get stares from our students, I may just make them more "aware" :). I don't think I'm going to get a wig, but I might. I asked my friend Rafia (also librarian colleague and office neighbor) if she was good at tying head scarves; I thought she might be because she was raised Muslim and wore a head covering when she was younger. She said she had no talent with the head scarves at all, sadly, but she's going to ask her sisters if they know of good websites that have instructional videos for doing head scarves. If you know of any, please post link(s) here or on Facebook. Peace, Jody.

First Chemo, Part 2

2009-10-04T08:18:00.000-07:00

Kyle was able to get my new prescription around 5:30, but when he got home with it, I noticed that it was not the cocktail I had mentioned to the on-call doctor on the phone but Phenergan -- in the same strength as the stuff I'd been taking orally, but in suppository form. I decided to go ahead and try it anyway.

The rest of the evening was pretty bad, lots of vomiting and nausea. I tried to read between bouts but was having a lot of trouble concentrating. I finally gave up around 10:00 and turned out my light. I must have been pretty exhausted from lack of food and all the vomiting because I went to sleep pretty quickly and slept until my alarm went off at 3:00 to remind me to take more meds, which I did. I couldn't get back to sleep right away and so read until 4:00 or so, then slept again until 9:30. I woke up this morning feeling better. I still have a bad headache but the nausea has greatly dissipated. I am REALLY hoping it lasts. Peace, Jody.

First Day of Chemo

2009-10-02T16:28:00.000-07:00

Yesterday, Kyle and I went first to Dr. Heistein's office where I got my second fill in the tissue expander, 60cc's again. I asked them if they were planning on doing 6 more fills with that much, because that was the original plan, and Dr. Heistein said, "No, actually, 300." Hah! I told him my boob would be bigger than my body if they did that much. He said that he probably would do another 2-3 fills.

We got to the chemo place shortly thereafter, and when I went in to have my blood drawn, they asked me which arm to use (because, like all women who've had a mastectomy, I can't have blood drawn on that side). I was surprised because I thought they would draw blood from the port. Although no one at Dr. Krekow's actually ever told me this, I'd read that several times on the Internet. The phlebotomist said she'd get the nurse, so shortly thereafter, Sue showed up and explained that they don't like to use the port to draw blood for a couple of reasons: first, the port is more likely to wear out with weekly blood draws over 6+ months, and second, the port works better for putting stuff in than taking stuff out. So I said that was fine; I just wanted to understand what was going on, and the tech drew the blood from my arm.

We then went to the chemo room. It's a long room with a bunch of recliners in it; the chairs are pretty comfortable, but they don't have much in the way of accommodations for caregivers (in my case, Kyle), just a straight-backed, lightly padded chair that I could see my butt going to sleep in after about 20 minutes. So I asked one of the nurses if it would be OK for Kyle to lie down in a recliner if they weren't too busy, and she said it was. Thirty minutes later, he was snoring -- softly, thank goodness.

The nurse who was taking care of me was very nice; her name is Sheela, and she appears to be Indian or Pakistani. She asked me how I was doing, and I said "scared" (I started crying a bit shortly after I sat down, mainly because I so didn't want to be there and because I was so scared). She said she would explain everything, and she did. She first got the line going in my port and started some saline. I couldn't even feel the needle going in because I had put some numbing cream on my skin over the port about an hour earlier. We then had to wait for my lab results, which didn't take long (about 15 minutes for them to get a CBC; I don't know whether it will take longer next time because maybe they will look at more stuff?). She then gave me the three pre-meds: the very strong and long-acting antinausea med plus the steroid that makes it work better through one bag, and a shot of Ativan into my line. The Ativan made me feel fairly loopy pretty quickly. They offered me something to drink; they have lots of juices and sodas available, so I chose a Diet Coke, and the guy who was serving me (he seems to have sort of a room-manager-type of position there) told me that I could have one, but that it was dehydrating and I really need to drink non-caffeinated beverages when I get home. Sheela told me that once the pre-meds were in, they would give me the chemo drugs, but we may have to wait a few minutes for them to finish mixing them, which we did.

So my chemo is administered in two ways. The Epirubicin and 5-FU are "pushed" (injected slowly into my line); the Cytoxan is a drip. The Epirubicin is red, and it makes my urine reddish. We had to wait about two hours for the Cytoxan to finish, then we got some last-minute instructions from Sue along with an appointment card covering the next month, and headed out around 2:30 or 3. So all in all, it didn't take as long as I thought it would. The only thing that was really disappointing was finding out that they do not have Wi-Fi.

One thing we had talked to Sue about was the Zofran prescription; for some reason, the insurance company was requiring an extra authorization from the doctor's office. She said she would take care of it. I also gave her the huge stack of photocopies from my mom's medical history; she said, "Wow" at first, then said she'd take a look at it and make copies of stuff that might be relevant to me. I'll get that back from them next time I'm in.

When we got home, I had a late lunch of some leftover pasta with chicken and a light cream sauce plus an apple with peanut butter. I felt OK, mostly just a bit sleepy and headachy. I definitely was starting to experience things tasting strange and smelling bad (or at least different). I had a light dinner of some macaroni with a bit of leftover marinara sauce; I took the Zofran and Ativan before I ate dinner. And yes, the pharmacist was a huge pain in the ass; I called to be sure the prescription was ready around 4:30, and he was still saying it was denied; I called Sue, waited another half hour or so, and called the pharmacist again. He was all tetchy and like, "I told you your insurance isn't paying for this without extra authorization." I told him that my doctor's office said it was taken care of, he checked again and said, "Oh yes, it's been cleared but not for the 30 they prescribed. I can give you 10." I asked him to check and see if my insurance would let me get 20, and he didn't want to do that but finally did and said yes. Now I realize that pharmacists are busy people, but good lord, was this guy rude.

I was, at this point (7:30ish), feeling a bit queasy. We got on the game for a little while then watched an episode of Buffy. So around 9:30, I'm feeling very queasy and I end up losing all my dinner. Kyle put me to bed after that, and I tried to get to sleep but really didn't until around 2:00, I think. My alarm went off at 3:00 so that I could take more meds, and I decided to take a Phenergan this time in the hopes that it would help me sleep better. Around 4:00, I realized it wasn't helping. Around 4:30, I had to vomit again. I think I finally fell asleep after that and slept until around 10. I got up, took a Zofran, had a cup of tea and again lost my tea about an hour later. I looked at my instruction sheet, and it said to call if the meds weren't helping with nausea and vomiting, so I put in a call to the on-call doc. She returned my call promptly and I told her what meds I've been on. She said she wasn't sure what to do because I was already taking the strongest stuff they can prescribe. I told her that my anti-emesis instruction sheet said that a suppository of Haldol/Ativan/Benedryl could be prescribed; she was unfamiliar with this protocol, but said she would call it in. After checking on the Internet, I did find a couple of journal articles supporting this treatment for CINV -- a new term for me: chemotherapy-induced nausea and vomiting. (I was a bit freaked out after seeing that Haldol is an antipsychotic drug; I know what the other two are.) So, anyway, I am now waiting to call the pharmacy in another hour or so to see if it's ready. And feeling nauseated again. Peace, Jody.

A Vague Sense of Foreboding

2009-09-30T18:21:00.000-07:00

Foreboding: an omen, prediction, or presentiment especially of coming evil (from http://www.merriam-webster.com/)

Much as I've tried to avoid it, it's been dogging me for several days. I have this feeling that something really bad is just around the corner. I hope it's just my subconscious dread of the chemotherapy that starts in less than two days.

I got all my hair cut off last Saturday, and I really like it. I go to Tiffany at Burt Grant Salon, and she does a great job (her prices are reasonable, too). She mentioned as she was getting started that the back was really curly; when she started cutting the front, I noticed the same thing. The last time I had my hair really short was in 2005 when we went on safari in Tanzania, and it had a bit of a wave, but now it's really curly. I don't have any pictures of me with this cut yet; I'll try to remember to get some soon -- before my hair starts to fall out, especially. I'll post them here and on Facebook once I have them.

This week at work has been good; I've enjoyed being back in the groove and seeing my friends every day. I've also been back on the desk this week, which has been fun. I really love working on the reference desk and interacting with the students. I spent some time this afternoon walking around to my departments and handing out cards and flyers in the hopes of stirring up some business (i.e., getting faculty to invite me to their classes so that I can teach their students how to use the library's resources when they need to do research; this is sort of the main point of my job).

My supervisor, Suzanne, worried and worked very hard to make sure that every single "i" was dotted and "t" crossed for my application for the sick leave pool that had to go to HR. It's very complicated, but what it mainly boils down to is that I've been approved by HR to use that time, so I don't have to worry about going on leave without pay, which would be highly problematic. And I'm down to right around 60 hours of time off left because of all the time I had to take after my surgery. I truly do thank my lucky stars that I work with such a supportive group of people and that the UT System has this safety net for people like me who have to fight a life-threatening illness.

I had to get my teeth cleaned before starting chemo because I was 6 months overdue for it; I had been scheduled to go in February, but we moved then, and I never got around to it. I finally bit the bullet, so to speak, and made an appointment to go see my cousin, Van -- a dentist who practices in Fort Worth. I had warned him several times about how phobic I am concerning dental work, and he and his staff did a really fabulous job! They were extremely supportive and friendly, and Van gave me lots of nitrous to make sure that I stayed fairly loopy throughout. I did have some decay under an old silver (amalgam) filling, so he drilled that out and put in a lovely inlay that matches my tooth. I'm so happy that's over :).

The other thing I've been thinking about a lot this week is my mother and the path she traveled with this illness. I finally received her complete history from her oncologist last Saturday, so I've been reading through much of it (the stack of photocopies is about 3 inches thick). What strikes me as odd, interesting, and rather scary is that she was also stage IIIA, with many other similarities to me (but also some differences). I had forgotten some details of her illness: how, when, and where it metastasized, mainly. The big thing that I had remembered was that it was in her spine, but she also had a spot on her face at one point that had to be surgically removed. And she had to have radiation there as well, which had a chance of causing blindness. I also ran across some notes that were rather chilling; one that read something like "Patient's daughter called; pt is in excruciating pain, 10+." I don't remember my mother or my sister ever telling me that she was in that much pain; I guess that is something else that they protected me from. Anyway, I'm going to take the stack of papers to chemotherapy with me on Friday and ask Sue what information there might be useful to Dr. Krekow and let her make copies of those parts.

So I'm trying to be calm and not frightened about Friday, but it's rather difficult. I have an appointment with Dr. Heistein to get another fill done in my tissue expander at 10 that morning, then I have to show up at the chemo place (which is upstairs from Dr. Brian's office) at 11. As I understand it, they will draw blood and do the labwork first, which will take about an hour. Then they will start with the drugs to combat the nausea, then the chemo. I'm not sure how long it will take all together, and I have no idea how I will feel that evening or weekend. I guess I will find out. If I don't feel up to letting you all know how I'm doing, I'll ask Kyle to do so. Peace, Jody.

Why Can't I Read??

2009-09-24T17:50:00.000-07:00

I'm so bummed. I found out from Sue that what I wrote here in the blog and what I had in my head that Dr. Krekow had said about the regimen we decided on was totally wrong. This is what it will be:

Cytoxan + Epirubicin + 5-FU for 4 cycles (1 cycle given every three weeks) = 12 weeks total

followed by

Taxol for 12 cycles (1 cycle given every week) = 12 weeks total

for a total of 24 weeks or 6 months.

So this translates to more drugs, a more aggressive and therefore toxic regimen and thus more likely to lead to severe side effects, and a much longer regimen than I remembered.

I have no idea how I got this so wrong. She wrote everything down for us, and I'm pretty sure I had the sheet of paper she wrote on in front of me when I was writing the blog post with my description of the different regimens. What I wrote above is exactly what she wrote on the paper I have.

Not only do I feel like an idiot for insisting to Sue that Dr. Krekow wrote what I remembered and being totally wrong about that, I also now have to deal with the knowledge that my regimen is twice as long as I thought it was going to be.

Oh joy.

The Oncologist Is NOT the Boogey Man

2009-09-22T17:51:00.000-07:00

In fact, Dr. Krekow is an extremely personable and quite beautiful woman, maybe about my age, probably a few years younger. I never thought she was going to be mean or anything, but I did have a bit of trepidation about my first visit with her -- mostly because I was scared of what she would say, not of her as a person or physician.

The first thing she did when she walked in the room was to ask me how I was holding up; she was very sympathetic and really listened to what I had to say. Mainly, I wanted her to know about my mother's history (the fact that the first round of Adriamycin she had nearly made her quit chemo; the fact that that same drug most likely caused her congestive heart failure; and the fact that her disease metastasized into her spine and major organs, if not actually causing her death, then causing her to pray for it). So I told her that I was physically feeling OK but that my emotional state was perhaps not so great since the surgery because the course of my illness seems to be following that of my mom. She then spent almost two hours talking to us -- educating us in lay terms as to what cancer is and how it works in the body and why the body cannot get rid of it by itself. She stressed that though my disease may seem similar to my mother's, each woman who gets cancer is unique, and each cancer is unique; no two people will react exactly the same way or have the same experiences. Though I knew all of this from my reading, it was good to hear her explain it, and I assume that Kyle probably got something out of it. She also explained the different chemo regimens that we could choose from. Here's what she laid out for us:

Regimen 1: Adriamycin + Cytoxan x 4 cycles (once every three weeks) followed by Taxol x 4 cycles (once a week) = 16 weeks total

Regimen 2: Taxotere + Adriamycin + Cytoxan x 6 cycles (once every three weeks) = 18 weeks total

Regimen 3: Cytoxan + Epirubicin x 4 cycles (once every three weeks) + concurrent weekly doses of 5-fluorouracil (5-FU) for 12 cycles (i.e., once per week) = 12 weeks total

She also mentioned that there is a clinical trial that I would be eligible for. The trial is randomized in the sense that I would not know until I was accepted which treatment arm I would be assigned to, but it is not blind or double-blind (i.e., once assigned to a group, I and those treating me would know which medications I would receive).

After hearing about my mother's experiences with Adriamycin, Dr. Krekow seemed a bit leery of putting me on it. She said that her original plan before talking to me was to recommend Regimen 2, but that she now was leaning toward Regimen 3 because Epirubicin, although very similar to Adriamycin in its cancer-cell-killing efficacy, seems a bit less likely to cause heart damage. She also seemed not too much in favor of the clinical trial because two of the treatment arms include Adriamycin in the regimen; she said if she could be sure that I would land in the treatment arm without the Adria, she would recommend it. Then she asked me what I wanted to do.

I don't know how you would react in a situation such as this, where you feel like your own decision may set you on a course where your life could be very short and full of pain and suffering or could be long and disease-free. It's not a pleasant place to be. The only thing I knew to do was to ask her what she would recommend, and she said that although all the regimens were state of the art, she would lean toward Regimen 3. So that is what we are doing. Nothing is written in stone; if the regimen needs to be changed or adjusted, it can be.

I have not yet met with Sue, who is the new Kelly (if you remember, Kelly is Dr. Brian's patient facilitator; Sue fills this role for Dr. Krekow). She will go over all the exact information about how the drugs will be administered and what other drugs I will be on to help control side effects. As I understand it, antinausea meds will be given to me along with the chemo through my port, but I think I will also have oral meds that I will have to take at home between chemo doses. I will have blood drawn every week so that they will know what my white counts are; I'm sure they look at other stuff too. After they do the bloodwork, I will have the 5-FU every week, so that will take at least half a day. Then I will also have the Epi and Cytoxan added to that routine once every three weeks. Though this regimen will be more time consuming in the short run, the total time for it is the shortest overall, so I don't think I will miss more work with this regimen than with the others. Sue and I are meeting tomorrow, so I will find out if all my surmises about how this is going to work are correct; after I meet with her, I will have an echocardiogram so that they will have a baseline for the condition of my heart before treatment.

The other thing I had done yesterday was the first fill of the tissue expander. Michelle at Dr. Heistein's office put in 60cc's of fluid, which seemed like A LOT. She had no trouble getting the needle into the valve (and it is a BIG-ASS NEEDLE), and I really couldn't feel it going in because of all the numbness I have, but I could see the tissue expander expanding. Right at the end it started to get a bit uncomfortable, but it wasn't bad at all. It only got bad last night. Not just my chest but across my back and down my arm felt so tight and sore that it woke me up at 3:30 and I couldn't get back to sleep. So I went to work today for the first time since the surgery and worked a full day on four hours of sleep. I called Michelle today and asked her whether it would be OK for me to take a muscle relaxant and a pain pill along with my OTC sleep med; she checked with the doc, who said it was fine. So that is the plan for tonight. Lord, I hope I will be able to sleep.

It was great being back at work today even though I was exhausted. Everyone was happy to see me, and I taught a class for one of my interdisciplinary studies professors whom I had not worked with before. I hope he was happy with the instruction. I don't think I did as good of a job as I normally do, but I don't think it was bad.

So there you have it. I don't yet know exactly what all the drugs do and why they work the way they do. I have a feeling that I will learn about and understand all this much better over the course of my treatment. If you choose to take the time to look them up, then more power to you :). I can only take in so much at one time, LOL. Peace, Jody.

Digital Copies of Three of My Fav Ann Beck Shots

2009-09-16T19:26:00.000-07:00

Ann Beck, one of our awesome photographers, very kindly and generously sent me digital copies of three of the shots I liked best. So here they are!

Now I just have to figure out how to embed one of them in the header of this blog. Hmmm...

A Port in Any Storm

2009-09-16T19:07:00.001-07:00

I got my port installed today. In one of my many wanderings on the Internet reading about all kinds of cancer stuff, I ran across a blog somewhere (I think it was by a physician) who wrote that the installation and removal of the port are milestones of sorts in the journey of people with cancer. (And yes, I do like that phrase better than "cancer patients"; it puts people before the disease and implies a more active role than "patient".) The port now marks me as someone in treatment, someone sick; when it's gone, I will, hopefully, be normal again. Or as normal as I ever was, lol. Anyway, for the truly curious or for those who just love looking at the latest in medical accessories, this link will take you to my port's manufacturer's webpage for the exact model I got.

The procedure was very fast. One of Dr. Brian's nurses told me that they only reason that they give a sedative is because the placement of the catheter in the vein is kind of delicate; it goes into my subclavian vein, just above my right lung, and they have to use X-ray to guide it in. She said that the patient must be absolutely still so that they don't damage anything getting that catheter in (the catheter feeds into the little central button on the port so that chemo meds can go in and blood can go out when they need to do labs on me). They wheeled me into the OR at 10:20, and I was still very alert at that point since the anesthesiologist had given me the "relaxing" med only a few minutes before. They asked me to transfer myself to another table, which I was able to do; after that, I remember absolutely nothing. I wonder whether I stayed awake and embarrassed myself by babbling for a few more minutes or whether I just went out like a light? I was in recovery and waking up by 11:00.

Kyle and I got home by 12:30 or so, had some lunch, and both napped. I slept until almost 4:00, fairly well, mostly, except that now it's hard to sleep on my right side, one of two comfortable positions I had left. I now have only the sleeping-on-my-back position, which I hate :(. Hopefully, the soreness from the port will go away very soon, so that I can again sleep on that side. And I really hope I can start sleeping on my left side soon; I have tried it most every night with no success. I fear it will be a very long time before I can sleep on my belly again, which was my favorite sleep mode.

I'm not feeling too many side effects from today, just a bit of soreness, fatigue, and headache. I think I will take a Darvocet soon. Peace, Jody.

Short Update

2009-09-15T12:09:00.000-07:00

I'm not going to write much today, beyond what I've already posted on Facebook; I just want to be sure that those who don't have a FB page know what's going on.

We saw Dr. Brian yesterday for the first time since my surgery. She was her usual, cheerful self. She gave my surgical site a brief look-see, said it looked just fine, and we discussed some of the after/side effects from the surgery. She is also convinced that the arm swelling/rash was a reaction to the preoperative surgical soap that was used on me, ChloraPrep, mainly because of the sharp delineation of the rash on my forearm. So I am adding that product to the list of medical stuff my body does not tolerate.

We discussed the question of when I could return to work and when I'm going to start chemo. We decided that this week would be a good time to go ahead and get the chemo port installed. I'd been dreading this for a while, because I thought I would have a port similar to the one my mother had, a Hickman catheter, which is both internal and external and which requires daily flushing and cleaning. I discovered, however, that I will have a completely internal port, similar (if not identical) to the one pictured here that is virtually maintenance free. This site has several high-quality photographs of what the port looks like and how chemotherapy is administered through it. So Dr. Brian will do the outpatient surgery tomorrow morning for the insertion of the port; she said that she does a vertical incision and makes every effort to position the incision so that the scar will eventually be hidden by a bra strap and thus not readily visible even if I am wearing a tank top or similarly revealing clothing. I think that this is very cool and am once again happy that I have a female surgeon because I doubt that most men would think about stuff like this. So because of the port installation, I will not be able to go back to work until next week (I was hoping to go back at the end of this week, but I guess it's better to get all this stuff done ASAP). I have an appointment with Dr. Heistein's office next Monday to have the first post-surgery filling of my tissue expander, and the same day, I will see Dr. Krekow (my oncologist) for the first time. (I've been trying to come up with a way to tell you how to pronounce her name, and the best I can do is that it rhymes with "BAKE-oh".) So hopefully I will be able to return to work on Tuesday of next week.

I got a copy of the pathology report from my surgery, and I have to say that it upset me quite a bit to read it. I'm not really sure why other than the fact that it doesn't sound positive (e.g., the size of the main tumor in my breast, the description of the tumor in the lymph nodes, the proximity of the tumor to my skin, etc.), and it's very difficult to read such a clinical description of the dissection and examination of a large, intimate part of one's body.

I finished reading the Breast Cancer Survival Manual, and I think it's a very good book. I found 99% of it to be comprehensible, and it all seems sensible. I highly recommend it and am now going to pass it on to Kyle; I hope he will read it. Since I'm now out of reading material, I just asked Kyle if we could go to the library this afternoon. Hopefully that will cheer me up a bit. Peace, Jody.

My Confinement, Day 10

2009-09-12T09:59:00.000-07:00

Let's see, what has happened since Tuesday? Ah, well, Wednesday we saw Dr. Heistein. He said that the swelling and rash on my left arm were definitely an allergic reaction, not an infection. We have since seen a doc or nurse almost every day this week, all of whom have varying opinions. The source of the allergy is conjectured to be the antibiotic I was on (Keflex), the soap they used to wash my upper torso and arms in the OR, or the Ace bandage that was wrapped around my torso after surgery. I tend to think it was the former or the latter since the swelling started to abate as soon as I stopped taking the Keflex and took off the Ace bandage on Wednesday. My arm is still a bit itchy and scaly from the rash but is still SO much better than it was a week ago. Other than the discussion about my arm, Dr. Heistein said that everything looked normal at the surgical sites (I have two incisions: one from the mastectomy, about 5 inches long and straight across where the front of my breast was, the other from the lymph node removal, about 2 inches long at the base of my armpit). The tissue expander has already been slightly inflated, but it looks lopsided to me, more full toward the top and center of my chest than at the base. I'm sure it will even out.

We met my radiation-oncologist on Thursday, Dr. Janice Tomberlin. She and my oncologist, Dr. Lea Krekow (whom I will meet on 9/21), are both in the same practice as Dr. Brian, my breast surgeon. This was just an initial consult so that she could explain what will happen after chemo when she takes over my treatment for the radiation portion. In broad terms, chemo is a systemic therapy, meant to seek out and destroy any cancer cells that are left in my entire body after the surgery. She said that a 1-cm tumor has about 1 billion cancer cells, and my tumor was 5.5 cm. You can do the math, I'm sure. Though the surgeon makes every effort to get everything, there are microscopic cells that are bound to escape. We didn't get into exactly what sort of regimen I will be on for chemo, but she did say that I will have six treatments, one every three weeks, so a total of 4.5 months. I had assumed that I would get chemo weekly because that's how I've always heard it's done, so I was kind of relieved to hear that it won't be that frequent. It could be that this relief will be very short-lived, however. She said that the drugs will go in and one usually feels pretty good the first few days; their effect peaks at around 7-10 days, and that is when I will feel the worst and have the lowest white blood cell counts. I will go in weekly to have blood drawn so they can monitor all this, and they will give me a medication to help boost my white counts. I will start to feel better and just about back to normal by the time another treatment is due. Dr. Tomberlin gave me a book: "The Breast Cancer Survival Manual" by John Link, and she outlined there what my numbers are. Warning: they aren't very cheerful.

I am second to last on the tumor-size scale: greater than 5 cm gives me a score of T3.

I am last on the node status scale: involved nodes that are fixed to one another gives me a score of N2.

These two numbers combined give me a stage of IIIA.

The only good news in the numbers analysis that they have done is that my Bloom Richardson score is 3/9, or Grade 1, which is the lowest grade one can have, which is good. These numbers analyze how the cancer cells are shaped, what size they are, and how quickly they divide. Dr. Tomberlin says that many breast cancer specialists are now convinced that this score is more important in predicting the ultimate outcome (i.e., full recovery vs. death) than the stage.

Until I had my surgery, I wasn't all that terribly concerned about my survival. It had crossed my mind, and I had asked Dr. Brian about it, but I wasn't thinking about it all that much. Now I am. What keeps going through my mind is that everything we have discovered since my surgery is just like my mom's case, and she died. Granted she was 74 when diagnosed, and 79 when she died, and we don't think that what actually took her was the cancer; from all appearances, she had a stroke. However, the cancer had gotten bad enough that we (my mom, sister, and me) had made the decision for her to stop all treatments and call in hospice. The cancer had long before metastasized into her skeletal system (mainly spine, which caused her no end of pain) and had lately moved into her major internal organs (kidneys and liver, if I recall correctly). So I will be very curious to look at her medical history when I finally get it. (I don't know that I've mentioned here that I've been trying to get this information from her oncologist's office for over a month; they at first refused to give me the info b/c I don't have medical power-of-attorney over my mom. When I explained that my sister had that and that she died three years ago, they said I had to send them a notarized statement that I was my mother's only surviving immediate family member, etc. I did all this and they lost my first request; I recently sent a second request, which they said they've received, but they recently moved and have to figure out where my mother's records are stored among the 400 boxes of deceased patients' histories.) I'd very much like to see what her original tumor's grade was.

Anyway, after the chemo or systemic treatment, I will have the local treatment: radiation therapy, which is meant to kill any remaining cancer cells at the site of the original tumor and affected lymph nodes. They will specifically target the skin covering where my breast was. By that time, the tissue expander will be fully inflated, which she said will make it easier to target the skin they will want to get without hitting my lungs, ribs, etc. They will also target my lymph-node area. The side effects of radiation are fewer than chemo: mainly a sunburn-like reaction on the skin, but no hair loss, nausea, and less fatigue. She said that although they make every effort not to have my lungs or ribs affected, there is a chance that I can get a chronic cough and weakness in my lungs called Radiation Pneumonitis (which is treatable). It is also possible that my ribs will be permanently slightly weakened and more likely to break, but only in an extreme situation, such as a car accident. Radiation is given every weekday with weekends off to allow the skin to recover; I will have 25 treatments, so 5 weeks.

On Friday, we went back to Heistein's office to have my drain removed -- YAYYYY!!!! This thing had been getting on my nerves to the point of almost making me cry. (The other big problem I'd been having since Wednesday was extreme insomnia, and the drain was bugging me more than ever at night. I now blame the insomnia mainly on the Benedryl I'd been taking for the allergic reaction; yesterday I didn't take it at all, and I slept SO well last night.) Basically, the drain was a largish flexible tube coming out of my left side (almost back) rib cage, held in place with one suture. The tube was attached to a bulb about the size and shape of a very large lemon, which was attached by a safety pin to the front of the sports bra I've been wearing since my surgery. Inside my body, the tube came around the front, under where my breast was, up along my sternum, ending at the top inside point of my tissue expander (I think); the interior part of the tube has lots of little holes to catch the fluid, which would then drain out to the bulb, which I had to empty twice a day. So when the nurse took it out, she had to snip and remove the suture, which I didn't feel at all; then she told me to inhale deeply, and she pulled it out quickly as I exhaled. She warned me that it would sting and burn a bit, which it did, but mostly it just felt weird as this thing sort of snaked out of my chest. The biggest relief about not having that thing hanging off of me was (a) being able to sleep without it getting in my way, (b) not having it sticking out from under my clothing and looking weird to the point that it made me self-conscious to be in public, and (c) being able to SHOWER! It felt so good to be under running water for the first time in 10 days! I had been trying to keep clean as best I could with sponge baths, baby wipes, and having Kyle wash my hair on the deck, but nothing compares to being able to take a long, hot shower :). After my drain was out, I asked the nurse when I could drive again. She said to ask the doctor, but she did not recommend driving before next Wednesday. Evidently, with the drain out, I have to be more careful than ever not to overtax my system. If I do, fluid will build up in my chest and could cause problems.

Yesterday was Kyle's birthday. I wasn't able to do much for him, but I had asked Rafia (my friend and colleague from the library) to come by and take me to the store on Wednesday evening so that I could at least get him a card, if not a little gift. We went to Target and looked around and I finally decided on an Xbox 360 game that my friend Mike Abrahamson recommended when we called him to ask him his thoughts. After we left Heistein's office yesterday, Kyle decided he wanted to have brunch at Waffle House, so we stopped there on the way home. As we were ordering, I asked him if I could have some of his waffle and he said no; we were playfully arguing about this when he made the statement that it was his birthday and he was NOT going to share his waffle. So our waitress gets all excited, goes and plays the Waffle House birthday song on the jukebox (who knew there was such a song?), brings a Waffle House paper hat like the line cooks wear with "Happy Birthday" written on it, and puts it on Kyle's head. He turned beet red but also was smiling from ear to ear, so I took a picture of him that I put up on Facebook and Twitter. He got all kinds of calls from his family in the afternoon, and then we went out for dinner, too. I had a coupon for $20 off dinner at Blackfinn, kind of an upscale sports bar, so we decided to try that. It was meh. But cheap :). While there, a HUGE storm blew in; Kyle got absolutely soaked running out to the car, which he gallantly drove up to the restaurant entrance so I wouldn't get so wet. I was actually a bit concerned about getting home because there was so much water on the streets. We made it, though, and saw that poor Lightning had freaked out in his crate to the point that he had scooted it over to the door -- how I do not know since it sits on carpet and does not scoot easily -- where it remained wedged until we walked in (he has horrible storm phobia). We gave him two Xanax, and he calmed down fairly soon. We spent the evening watching "Dollhouse" on DVD, and as I said, I went to bed hopeful that I would finally get a decent night's sleep, which actually, blessedly did happen.

It's still raining today, and the temps are in the low 70s, so we have the windows open, and there's a lovely breeze blowing in. We don't have much planned for this weekend, and Monday we have an appointment with Dr. Brian. I'm hoping she will say I can go back to work later in the week. So that's about it for now -- except to once again thank so many of you who have sent cards and flowers (even though I asked you not to!). I so much appreciate your concern, love, and support, and I will as ever keep you posted here or through Facebook. Peace, Jody.

Ann Beck Proofs Are Up!

2009-09-08T19:50:00.000-07:00

The proofs from the session we did with Ann Beck are done. If you'd like to see them, go to http://www.annbeckphotography.com/, click on "enter website" then click on "proofs" and enter the password "jody". For those who might want to actually buy a print or two, you can do so right through the website. For the photo you like, just click on "add to cart" and follow the prompts.

My Confinement, Day 6

2009-09-08T09:17:00.000-07:00

I'm beginning to think of this enforced inactivity in those terms: a confinement. Isn't that what women used to have to endure at the end of a pregnancy? Or was it every month when they had their period? I just associate that term with women being segregated from society for a length of time because of what people used to euphemistically term "female troubles" (though I've heard that phrase again since I've been back in the South).

I've been off the pain med and muscle relaxant now for about 36 hours. I'd been tapering down but decided I didn't really need them any more at all yesterday, so I didn't take any last night. I switched back to my usual OTC sleep med (as I believe I've mentioned here before, I have horrible insomnia) and slept fairly well, though it took me a good two hours to get fully asleep. One reason I wanted to get those meds out of my system was that they gave me the worst case of constipation I've ever had. My cousin Karen warned me about this, and she should know: She's had literally dozens of major surgeries as a result of a terrible car collision she miraculously survived in the late 1970s. She is now in the process of having one of her legs pretty much completely rebuilt with the goal that it will finally be the same length as her other leg and stop causing her to have so much back and neck pain. Anyway, she emailed me and warned me about this side effect of painkillers and advised me to ask for stool softeners at the hospital, and though I believed her, I didn't want to take a medication that I might not need, so I didn't ask for anything. Now I SO wish I had. I really had no idea what constipation felt like until a couple of days ago. Five days without a BM can definitely leave one feeling incredibly icky. I'll say that the problem is better now and leave it at that :).

My arm seems a bit less swollen and painful today, but it was still so bad yesterday that I paged my surgeon again. He seemed annoyed by my page, which frankly annoyed me, but of course I apologized profusely for bothering him. He said the only thing he could advise me to do was go to the ER, where they would likely do a CT scan of my arm to be sure there wasn't a blood clot. That seemed a bit extreme to me, so I decided to wait until today to try to get over to see him in person. Unfortunately, I forgot that a plumber is coming by to inspect the installation of our new hot water heater (I guess my landlady installed it; maybe the inspection by a professional is a city regulation?). We don't know what time the plumber is supposed to be here. All they would say is sometime today. So if I can't get over to see the surgeon today, we will just keep our appointment we had with him for tomorrow. He's not going to take the drain out, though. I asked him again what are the criteria for the removal of the drain, and he said less than 30cc of liquid total per day for three days in a row. I'm still empyting this thing every twelve hours and getting between 20cc and 30cc each time. My guess is that the earliest it will come out is the end of the week if I'm very, VERY lucky. But probably Monday :((((((.

So without the pain med to make me sleepy, I've been awake and alert during the day, which means more time to get bored. Yesterday I played WoW for a little while but my arm was hurting too much to be on the computer for very long, so I ended up watching TV. A lot of TV. We don't have cable or satellite service, so anything we watch has to be through our Apple TV or Netflix (disks or streaming via the Xbox 360). I had saved up several episodes of "Mad Men" and watched all of them, plus several more of "Freaks and Geeks." I like Mad Men a lot, but Kyle's not crazy about it -- he says Don Draper has no redeeming qualities, and he can't stand Peter Campbell. I feel the same way about some series that he likes (in particular, Battlestar Galactica -- not a single character worth caring about on that one), but no biggie. So I watched TV by myself for quite a while because Kyle was sleeping for a good part of the day. (He, sadly and unfortunately, picked up a bad cold somewhere. I pray I don't get it.) I love Freaks and Geeks, too; it reminds me so much of my high school days. I watched an episode last night in which the first mention of punk was made. It showed Nick getting ready to go to a punk club and ripping up his clothes, putting safety pins everywhere, lol. Oh, how well I could relate to and remember that. There was one time Kim Hill and I were going somewhere, I don't remember where -- a party, maybe? -- and we spiked our hair, did new-wave/punk makeup, and wore black plastic trash bags as tops.

I guess I'm going to fire up my work laptop and see whether I can get the VPN client running so that it will work just as if I'm there. If so, I'm going to try to get some work done. There's really no reason not to. I think I can log at least half a day's worth of hours today. I should probably call Suzanne and make sure that's OK, or at least tell her that's what I'm doing. Perhaps she'll have something in particular that she wants me to work on.

I just looked back over the blog and realized that I hadn't summarized what Dr. Brian told me the day after surgery. I guess my head's been too foggy. She said that after they removed the sentinel node and found that it was positive, they removed a bunch more (22 total, I believe) and found that five were affected. She said that this will likely mean six months of chemo followed by four to six weeks of radiation, which is somewhat confusing to me since she had earlier said that it's rare to get radiation if one has a mastectomy (but my mom had both). I guess all will be explained by the oncologist, Dr. Krekow; I have an appointment with her on September 21. Frankly, I'm trying not to think too much about the chemo. It scares me.

A Quiet Weekend

2009-09-06T09:25:00.000-07:00

I just woke up a little while ago. I haven't had too much trouble sleeping, which surprises me. Friday night and Saturday morning, I was letting myself sleep on either my right or left side since neither was painful, but then I woke up yesterday with my upper left arm swollen, so last night, I tried to stay just on my right side, which isn't easy. I rolled onto my back several times and tried sleeping like that, but it didn't work because (a) I hate to sleep on my back, and (b) that position made the whole surgical area and my arm throb. My arm is still swollen, which is freaking me out a bit, making me think that I already have lymphedema. I called the plastic surgeon and asked him about it, and he said it's probably just a reaction to the surgery that will subside and not lymphedema. But he did tell me to try to keep the arm elevated, which I am trying to do. But that means I can't be on the computer :(.

My pain levels are really low now. I haven't had any meds since about midnight, almost twelve hours, and I'd say I'm at a 1-2 for pain. The swelling in my arm is more bothersome and painful than the surgical area, in fact. So I think I will try to not take pain meds or muscle relaxants today, just the antibiotic and nausea med (and the latter only because I'm not sure whether it was the antibiotic making me sick on Friday).

I'd really like to try to wash my hair today. The last time I washed it was Wednesday just before my surgery, and it's really grossing me out. Kelly said we could try doing it in the kitchen sink, but the other option we thought about is out on our deck. We have a privacy fence, so no one could see, and it's not slippery, so I don't have to worry about falling. It's still so warm here that I don't think I'd get cold, even with no hot water. The cold water from the tap is so tepid as to be close to body temperature. So that will probably be the big project for the afternoon: Operation Hair Washing!

Yesterday was very quiet. I was on the computer most of the day, which probably wasn't great for my arm. My friend and coworker, Gretchen, came by with a mountain of food around 7:00. She brought mac and cheese, chicken salad, chicken noodle soup, and tortellini soup -- and LOTS of all of it! I think we'll need to freeze some; there's no way we'll be able to eat it all before it goes bad. What a sweetheart she is to do that, and from what she tells me, people at the library are lining up to be next to bring us food. And my long-distance friends, Alesia, Edie, and Frankie, want to hire a personal chef for us. Everyone really is being too kind.

I'm starting to get impatient to have this drain out, to the point that I'm counting the days/nights and really, really hoping that Dr. Heistein will take it out on Wednesday. It's bothersome on many counts: (a) it looks stupid under my shirt, (b) I can't bathe as long as it's in, and (c) the point at which it exits my body really itches, though it's one of those phantom itches that is happening at a site that's numb. I've never had such extensive numbness in my body before. It's pretty freaky. I'm afraid that if I scratch too hard, I'll hurt myself without knowing.

A bunch of the girls (Rafia, Erin, Gretchen, Barbi, others?) are having a BBQ at Erin's house today. They talked about doing it here, but I didn't think I'd be up for having a lot of people over for an extended period of time. I do think that I may feel up to going over there for a little while, however. Erin has a cat, so I won't be able to be in the house for any length of time (I'm deathly allergic), but as long as there's a shady spot outside, it should be pleasant. I just checked the weather, and the highs are supposed to be in the low 90s, not too bad.

That's about all that's going on here. Kind of a boring, mundane post, but I guess that's kind of nice for a change. Peace.

Jody

First Day at Home

2009-09-04T18:03:00.000-07:00

Today was my first full day at home. I am surprised at how well I feel, quite frankly. Don't get me wrong -- I'm not up for a marathon or anything. But I was thinking that I might have trouble just walking by myself, and that hasn't been the case at all. If I'm in bed on my side, I just try to roll to the edge, swing my legs down, and sit up using my good arm to push me up so I don't have to use my chest muscles much, if at all. I'm still a bit woozy in the head and so am trying to walk slowly, but I really am not doing bad at all.

The only thing that's been unpleasant today is that I got really sick to my stomach right after I ate lunch. That was also after I took my last dose of pain meds and muscle relaxants, so we are thinking that it's likely the pain med that's making me sick. I called my plastic surgeon's office (he is handling all my prescriptions) and since I'm already taking just about the only pain med I can take without going to an OTC pill, such as Tylenol, they decided to call in some anti-nausea meds. So I'm now on that, Phenergan, and so far it seems to be working.

I saw my incisions for the first time today. I must say that they look very weird, but they don't look as bad as I thought they would. Yesterday, Kyle said I looked like a Borg because I have a tube coming out of my rib cage, lol. I saw that for the first time today as well, and I have to agree with him. It's kind of cool looking! So I was proud of myself that I didn't cry or even get upset at all. I guess that part of my mind that needed to be reconciled to this reality is now on board with the plan.

Much of the upper part of my left arm and my left rib-cage area are numb; I was told to expect this, but it is rather weird. I get itches where I'm numb and I go to scratch, but I can't feel anything.

OK, typing this has tired me out, and my left arm is starting to feel funny, so I'll sign off for now. Peace out, Jody.

Post Op

2009-09-02T22:07:00.001-07:00

I told Jody I would post here so that the people not on Facebook or the people that haven't heard the news yet could.

Jody made it through the mastectomy surgery fine. When the surgeon came to speak with me I had a feeling that there may have been some unusual circumstances because it had taken longer than I expected. She told me that the sentinel node had been positive when they sent it off for biopsy and because of that, the surgery took longer. What this means is that she removed additional lymph nodes in addition to the sentinel node. This is not the news we were hoping for. Ultimately it will depend on what we find in the pathology report tomorrow or Friday that will determine if she needs to have chemotherapy and possibly radiation therapy. At this point one round of chemo is almost a guarantee.

The second surgery being the reconstructive went along swimmingly and there were no surprises. So at least that went fine. She is currently sleeping and getting stronger by the hour. Most of her day was spent pretty drugged and sleepy from the pain meds, and when she was lucid she would try to eat or drink, but not too successfully. They switched her off of morphine in hopes of alleviating the nausea. Only time will tell if she can successfully keep her breakfast down. I'm sure tomorrow she will be feeling better than today and we'll determine if she can come home or stay another day/night in the hospital. All of your feedback to her via email, Facebook and such is getting relayed to her by me as time permits and is much appreciated. Thanks everyone for your support and kind words. I know it means a lot to her and myself and just knowing that you all are out there pulling for her will help her gather strength to get through this. Goodnight.

Goodbye, Left Breast

2009-09-01T20:30:00.000-07:00

Last weekend was not pleasant. I spent two hours on the phone with HP customer support because of a bad AC adapter for my laptop. If you are a Facebook friend of mine, you've already heard me complain about that as well as the next wonderful surprise. I woke up Sunday morning to water standing in the master bath, not a lot, but even a little is worrisome if it's just in the middle of the floor and you have no idea where it came from. The day before, one of our neighbors knocked on our door and said she had water standing in her yard, and she thought it was coming from our house. Kyle took a look around and couldn't find a source. We called the landlady, who said she'd come by on Monday. Well, when I saw the water in the bathroom, I realized that something was really wrong, so I took a look in the garage, and sure enough, water was seeping up through the foundation out there too. I woke Kyle, and he was able to locate the main and turn it off. So, no water all day Sunday, nor Monday. We did find out yesterday that the problem was a leak in the pipe from the hot water heater to the master bath; the pipe, of course, is in the slab in the master BR closet. So we had to spend a good bit of time last night emptying the closet completely.

We had scheduled some time for a sitting with Ann Beck, a local photographer, on Sunday afternoon. I wanted to get some pictures made of Kyle, me, and the dog while I still look healthy. So we called my friend and colleague, Eric, and his wife, Stacey, to see whether we could shower at their house. They said that was fine, but of course Eric had to tease us about how stinky we were when we walked in his house, lol. So we showered and went to meet Ann; I hope some of the photos turn out well. I think they will. That was the only good part about this weekend :).

Yesterday and today at work, I spent most of my time trying to wrap everything up: time sheet, monthly report, sick leave pool application, auto-responder on email, new greeting on voice mail, etc. I taught a class this afternoon as well for one of my favorite interdisciplinary studies professors. I got done there and ran a few errands, and then Kyle and I went out for a casual but tasty dinner at Hoffbrau: lovely salad, steak, and scalloped potatoes.

Things aren't as I would like for them to be at the house. Kyle made a valiant effort to clean today, but the contents of the master closet are still strewn everywhere; the plumber fixed the leak, but he will have to come back tomorrow to fill the huge HUGE hole with concrete. Oh well, so much for having a clean, serene home to return to. I will sleep in the guest room when we get back until Kyle can get everything back in place in the master BR. I'm trying to remember that this really doesn't matter that much in the grand scheme of things.

I've been crying a bit off and on today; I'm sure I will get very emotional tomorrow. I find it truly hard to believe that I have to voluntarily walk into a hospital tomorrow to have a part of my body cut off. A part of my body that appears to be perfectly healthy, no less. I mean, if it looked sick, that would be another thing. I wonder whether I will be able to do it without crying and begging them not to do this thing to me? I know it has to be done. Well, the logical, intellectual part of me knows this has to be done. But the part of me that really, really likes my body just the way it is does not agree in the least. I suppose that the latter part will just have to be reconciled to this reality sooner or later. For those of you who might be thinking, "Oh, it's just a breast; it's not that big of a deal," well, I understand that thinking because that's what I thought when my mom went through this. I have no idea whether she had as much sadness about losing her breast as I have had, because I was stupid and didn't think to ask her how she felt about it. But now I can tell you that this is very, very, very difficult. Perhaps it's not so hard for some women, but this is the hardest thing I've had to wrap my head around outside of my mother's illness and death and my sister's death.

So I need to get to bed. Sorry to end this evening on a sad note. I hope to be able to write soon, but I've told Kyle to try to post a bit here and there until I can get back to this blog. Kyle says to warn you that his posts will not be like mine; they will be pretty brief, like "AOK" [publish]. Heh. Thanks again to all of you for your love and support. See you on the other side :).

A postscript:

I went to bed and read what I wrote here a little while ago. I had thought that I might keep one thing private about what I did today, but when I thought about it more, I realized that there's no reason to. I decided last week that I wanted some more intimate portraits done of myself, something to document the way my body looks now. So I had asked Ann Beck for a recommendation, and she put me in touch with Jennifer Weintraub of Sugar Photography in Dallas. I spent some time with Jen and a stylist she works with, Julie, this afternoon, and the two of them could not have been nicer had they been my own sisters. So I want to publicly thank Ann, Jen, and Julie for making me feel so special and helping me out on very short notice. Something about having documented the way I look now is extremely comforting to me, helping me to feel better about what's happening to me than almost anything else. So thanks, ladies, you are angels :).

It's Been a Mad, Mad, Mad, Mad Week

2009-08-27T18:21:00.000-07:00

Last weekend was lovely; on Friday, I went to dinner with some women from UTA (three I work with in the library and two English grad students), and on Saturday, Kyle and I went out with Suzanne and her partner, Julie, to a newish place (for Arlington) called Chuy's. It originated in Austin, and the Tex-Mex there is AWESOME. Kyle was super-excited (and if you know Kyle, you know that's rare) to get Hatch green chile sauce there. I spent about 4 hours Saturday and Sunday working on my subject guides (for work).

This week, as you may have gathered from my highly unoriginal post title, has been CRAZY. Monday was the first day of classes, so of course things at work have gone into high gear overnight. Meanwhile, I had to be out three afternoons in a row for doctor consults or other health-related stuff, grrrrrrr!

Monday: Met with Dr. Brian again, mainly just so we could go over all the scan results face to face and have all of our remaining questions answered. Here's what we asked and what she said:

Am I likely to have to have chemo? It depends on the pathology reports on the sentinel lymph node and the tumor itself; these reports should be back two days after surgery.

How long will I be in the hospital? Usually two nights, sometimes one less, sometimes one more; it all depends on how quickly I recover.

If lymph nodes are involved, does that mean another surgery? Yes, it would mean another surgery, probably after two weeks or so.

Does my cancer have hormone receptors? Yes.

What does that mean? And how will it be treated? It means that the cancer cells I have love estrogen; each cell has a little place in it for estrogen to come and set up house and make more baby cancer cells. I will be given a drug called Tamoxifen that fools the cancer cells. Basically, the drug mimics estrogen and thus blocks the actual estrogen in my body from moving in with the cancer and helping it to spread. I will be on Tamoxifen for the next five years, at least. You can read more about it here, if you wish.

We talked more about genetic testing for the BRCA abnormality, which I had refused at first (since I have no daughters, and my sisters are dead), but after I thought about it, I decided it might be worth considering. I do, after all, still have one breast that is unaffected. Dr. Brian told us that if I don't have the genetic abnormality, the likelihood that I will get cancer in the other breast is less than 10%. If I do have the abnormality, the chance goes up to 56% to 87%. Also, without the abnormality, chances of ovarian cancer are less than 2%; with it, they are 27% to 44%.

I have to ask Dr. Brian one last time whether she is absolutely sure about the necessity of a mastectomy, whether there is any chance for any other resolution. She says, of course, yes, she is sure, and no, there's nothing else to be done. Nothing effective and safe, anyway. So I tell her that we can go ahead and schedule it, as well as the reconstruction. My surgery will take place next Wednesday, September 2, starting at 9:15. The mastectomy will likely take around 75 minutes, and the placement of the tissue expander takes about the same amount of time; Dr. Brian and Dr. Heistein will come out after each of their jobs is done to let Kyle know how I am. I will be in recovery for about an hour, and then Kyle will be able to see me. I will tell him to be sure to post here as soon as possible after surgery so that you can know how I'm doing, too.

Tuesday: Meet with the genetic testing counselor, who is a physician's assistant for Dr. Krakow (the oncologist who is part of Dr. Brian's practice). She is very thorough, explaining in great detail what I posted above and much more, for about an hour. They then draw blood, which is sent off to a genetic testing lab. $3200 and two weeks later, I will know whether I have the BRCA abnormality.

Also meet again with Dr. Brian, briefly. I think I mentioned before that at the very beginning of all this mess, Dr. Rice found a lump in my right breast. Well, that was a cyst, and it's never bothered me before, but last week it really started hurting. So Dr. Brian aspirates it very quickly and painlessly; the only part that hurts is the shot to numb my breast. It's over in less than five minutes.

We then meet with Kelly, the patient facilitator, again. She is SO NICE! I ask her lots of questions. I thought I had asked all the questions I needed to ask the day before with Dr. Brian. But we came up with so many more. And although I'm still very scared, I feel like I understand better what's going to happen to me, which helps to alleviate the fear somewhat. If you are squeamish, you may want to skip the next parts.

GROSS SURGERY DESCRIPTION ALERT!

For my procedure, a simple, skin-saving mastectomy, Dr. Brian will make an incision all the way around my areola and remove the nipple (sob!!!), then remove all the actual breast tissue. I will have a horizontal closure right in the front of what used to be my breast, about 2-3 inches long. She will make another longish incision under my left armpit and will inject my lymph nodes with a blue dye. As soon as she sees the first node turn blue, she will know that's the sentinel node and will remove only that one for analysis. Dr. Heistein will come in and use a retractor to separate the muscles of my chest wall from my ribs, making a pocket for the tissue expander, which is kind of like a very tough balloon. He will not have to cut the muscles, however, and the muscles will hold the expander in place. There will be no external sutures, and the internal ones will dissolve. A long, flexible tube with holes in it will be placed under where my breast used to be. This tube will extend outside my body and will feed into a closed suction ball, which will collect the fluid that my body will naturally produce in reaction to the trauma. I will have to keep this drain for a week to 10 days, emptying the suction ball twice daily and measuring the amount of fluid so that the docs will know that my body is slowing production of it, which means I'm healing.

GROSS SURGERY DESCRIPTION OVER!

I'm told that afterward, there is really very little pain from the mastectomy. Most is from the tissue expander placement. Kelly says that many describe it as being like a charlie horse in your leg, very, very tight-muscle feeling, but in your chest, obviously. She didn't say how it felt to her. I will have a morphine pump for the first 24 hours or so after surgery. They will then wean me from that and get me on to oral pain meds and muscle relaxers. The only oral pain pill that I've ever been able to take that didn't make me vomit (violently and repeatedly) is Darvocet. Unfortunately, it's a pretty sucky-ass painkiller, nothing compared with, say, Percodan or Vicodin. Kelly says that if one Darvocet doesn't do it for me, maybe they will let me have two. I'm freaking out.

When I come home, I am not allowed to take a bath or a shower the whole time the drain is in. A week to 10 days. Kelly says I can have a sponge bath, and Kyle can wash my hair in the kitchen sink if we are very, very careful. But that's it. I'm not allowed to do anything at all. No laundry, no dishes, no housework of any kind. I can't lift my arms above my shoulders. We have to be extremely careful because if I'm woozy and start to fall and Kyle grabs my arms, he will likely rip open incisions.

Kelly spends about an hour going over and over all of this with us. She is extremely sympathetic when I start crying again; she explains that it is part of the grieving process. She asks us about 15 times if we have any more questions. We come up with a lot but finally can think of no more. In the small meeting room where we are, there is a box with a bunch of heart-shaped pillows in the corner. She tells me to pick one out; they give one to each patient to use as a cushion between her newly mastectomied chest and the seat belts of cars. She says it's also very nice to use right after surgery, to tuck under the arm that has the incision. I pick out a navy-blue pillow with a small cream-colored kind-of fleur de lys pattern. It has a note on it that says, "Made 4 U with LOVE by Hannah, Age 15." Kelly tells us that girls at a local church make them. I think to myself, I never thought I'd be the kind of person to receive a handmade, heart-shaped pillow from a 15-year-old, church-going girl named Hannah. Well, thank you, Hannah, wherever you are.

Wednesday: On Tuesday, I got a call from the hospital where my surgery will take place, kind of a pre-op interview about my health history. When they found out that I smoked for more than 20 years, they said I'd have to come in for an EKG. GRRRRRRR. OK, well, that one's my fault. So I had to take YET MORE time away from work to drive 22 miles north of my campus to Harris Methodist Southlake. It took me 30 minutes to get there, 15 minutes to get checked in, and about 15 seconds for the EKG, which was fine, of course. The hospital is really beautiful, looks more like a spa. I saw some photos of the patient rooms, and they look like hotel rooms. There will be a bed and lounge chair there for Kyle, and they have wi-fi, so Kyle can bring my laptop to amuse himself while he's watching over me. By the time I'm done at the hospital, it's 5:00, so I hit bad rush-hour traffic on the way home. I was going to go back to work for a while, but after sitting on 360 southbound for 20 minutes and going about 2 miles, I decide to get the hell out of there and head home.

So that's it. No more consults or scans or tests before Wednesday. I have the next week, well less now, to get done everything I need to do before I won't be able to do anything at all for a while. My days are filled with frantic, nervous action, punctuated by staring into space and thinking about HOW MUCH I DO NOT WANT TO DO ANY OF THIS. Sometimes those thoughts catch up with me and I cry. A lot. But not too often. I think my heart-shaped pillow and I are going to become very good friends.

Kathleen's 3-Day Walk Link

2009-08-21T21:53:00.000-07:00

As I mentioned earlier, my friend Kathleen is doing the Komen 3-Day Walk again this year. She'll be walking 60 miles over those 3 days; that is a lot of walking! Well, it seems like it to me, the slug couch potato. So here is a link to her page; I will go ahead and actually paste it here rather than put it in the html code of this post so you can see the address, if you'd like to copy and paste it elsewhere (it resolves to a more complicated URL):

http://www.the3day.org/goto/kathleen

Thank you, Kathleen, for all you are doing! I feel so very lucky to have you on my side :).

More results, deconstruction, reconstruction

2009-08-21T20:02:00.000-07:00

So Wednesday, I got the results from the breast MRI. Basically, it revealed nothing new. Which is good and bad. The good part is that it didn't show any signs of cancer in my right breast. The bad part is that it confirmed everything in my left breast but gave more detail: The tumor is the size that Dr. Brian thought it was (4 cm x 3.8 cm x 3 cm), and there are other details on the report, but I don't know what they mean. We have an appointment with Dr. Brian on Monday at 3:30, during which I'm going to ask her to explain all the med-speak.

My reaction kind of surprised me. I took it almost as hard as when I first learned I had cancer. I was really upset. I guess that completely unbeknownst to my conscious mind, in some small, dark corner of my head, I was still holding out hope that the mammograms were wrong, the biopsy was wrong, Dr. Brian was wrong. So this breast MRI is kind of like the death sentence for my left breast. I'm very sad about that. And I don't want to hear a single person say, "Oh, but at least your right breast is clear." That's like telling a mother who has lost a child, "Well, at least you still have your other child."

So we went to talk to the plastic surgeon yesterday afternoon about reconstructive surgery. It's much more complicated than I first understood. The type of reconstruction that Dr. Heistein (pronounced HIGH-steen) is recommending is called immediate two-stage reconstruction; you can read about it here. But I'll summarize: immediately after the mastectomy, Dr. Heistein would come in and make a pocket between my rib cage and the muscles of my chest wall. This is where the tissue expander would be placed. He would slowly fill it once a week for 8 weeks until it gets to the approximate size I want; with each time it gets filled, it would be painful, as would the initial placement of it because it is stretching very strong chest muscles. The filling of the expander could not take place while I'm on chemo, if I have to have it. So then around 4 to 6 months after the mastectomy, I'd have to have another surgery, with an incision just as large (he said he'd just cut through the mastectomy scar, in fact), to remove the expander (which is very rigid) and put in the actual implant. I'd probably need a week at home to recover from this surgery. Then way on down the road, I'd have to have the implant replaced in 10-15 years.

Oh, and he's saying that to make the right one match the left, I'd need to have at least a lift on the right, if not an implant. I saw pictures of some of his patients. He's correct; the ones who look the most balanced and natural are the ones who've had both breasts worked on. Though as long as I'm wearing a bra, they would probably look fine. It's just without that, they won't sit at the same level on my chest.

::sigh::

Having almost no experience with surgery in my life, I'm finding all this very difficult to comprehend or try to figure out. I've been under general anesthesia a few times but have never had to have an incision in my skin or my muscle for a surgical procedure, so I'm just at a complete loss as to how much this is going to hurt or how difficult the recuperation will be. I know I can talk to other people about it, but each person is so unique with her own level of strength and ability to bounce back, I really wonder how much it would reveal that would be helpful to me. Even though I've been assured by both surgeons that pain management will not be a problem, that's what I was told when I broke my wrist and was given Vicodin, which made me vomit for two days after I stopped taking it (I can't take codeine).

What it boils down to is that I know I have to have the mastectomy. I have no choice in that. So I will look abnormal after that if I don't have the reconstruction. But the reconstruction is my choice, and I think I will regret it if I don't do it. But it's scaring me. Bad. As I told a friend, I'm stuck between an awful place and an awfuller place. Kyle asked me which was which, and I'm thinking that the awful place is the reconstructive surgery, and the awfuller place is feeling that I will look abnormal/deformed.

Am. So. Exhausted.

2009-08-18T18:14:00.001-07:00

This one will be very brief. I made it to the hospital in time, early in fact, and was for some reason highly bemused that they actually use a lead container to carry around radioactive injections. That was the first injection I got after they put in the IV. Then I had the breast MRI, for which I did indeed have to lie on my belly on a rig that had two holes for my breasts to hang through. AT LEAST it was set up like a massage table for one's head -- a nice cushioned hole so my head was facing down and not twisted sideways. And wow, an MRI is SO LOUD! Then I had the CT scan, very quick and painless. Last was the bone scan, just had to lie on my back and try to ignore the huge metal square thingie that was about an inch from my nose (to start with, at least, until the table I was on sort of fed me out from under it). None of the injections hurt, but now I understand what a couple of people were talking about when they said the one for the CT scan makes you feel "funny"; the tech doing that one warned me about it. He said it makes you warm all over, and some people feel like they are urinating, but they aren't. It's just a huge flush to your skin, ALL OVER, including the hoo-hah area :).

I was done much more quickly than I thought and so was able to be at work by 11:30, woo-hoo! I don't know that I accomplished much today because I was so tired, but at least I will only have to claim 2.5 hours of sick time.

And the good news -- finally, yes, some good news! The good news is that I had a call from a nurse at my surgeon's office this afternoon (much sooner than expected). She told me that my CT and bone scans were completely clear of disease and/or abnormalities! Now my lymph nodes could still be involved, and that would be bad, but at least there is no sign that the cancer has spread to my major organs or skeletal system. The nurse said that I should get a call from my surgeon tomorrow or the next day with the breast MRI results.

Everyone at the Baylor facility was really just so sweet. They could not have done more to make me feel comfortable, and they got me in and out very quickly. Here's the only sucky part: right after the nuclear med tech put in my IV, she commented that I sure had a lot of scans lined up. I told her I wanted to get them all done at once so I would not miss even more work time by having to commute back and forth three times. Then she says, "Oh, you do know we're open on Saturdays, right?"

AAAAARRRRRRGGGHHH!!!!!!!!

A Technical Note + Many Thanks + A Few Shout-Outs

2009-08-17T17:36:00.000-07:00

I don't have much time to write tonight. I have to be in bed soon if I'm hoping to get anywhere near a decent night's sleep tonight since I have to be up at around 4:30 to be at the hospital by 6:30 for my day of scans. GAH!!! I AM SO SO SO NOT A MORNING PERSON!!!! I said that already, didn't I :)?

First: I am a blog n00blar (as we say in WoW), so I didn't have the RSS buttons set up at all on my blog until today. Many apologies. Mea culpa and all that shit. I looked over all the gadgets available today and added those I thought would be useful (search, RSS, etc.); let me know if anything's missing that you'd like to see.

Second: I have many, many thanks to give to all of you for making me feel so loved. I have tried as much as possible to thank each of you personally, but I've probably missed a couple of emails or FB comments. If that is the case, please accept my apologies and know that I have read and greatly appreciated each and every one of your comments. I honestly only have so many hours in the day, and obviously most of my time during the week is taken up with work, and I'm working extra hours as much as I can to build up comp time. On the weekends and weeknights, I try to spend time with Kyle or just on my own doing something that doesn't involve thinking about cancer. Like watching "Entourage" and "Mad Men" as I did last night for about four hours :). And don't even THINK about talking to me about what is going on currently with those shows! I'm always a season or two behind because I watch them on Netflix. If you send me a spoiler, I will have to hunt you down :P.

Third: There are a few people I want to single out. First, my sweet, dear, crazy husband has never been more supportive. Anything I have asked, he has done. I told him that I just have too much on my mind to keep deciding what to have for dinner and doing the cooking. He said he would do it. This from someone who has never cooked much at all (OK, that was partly my fault; I'm so obsessive-compulsive about doing stuff a certain way that he would always get upset with my telling him what to do and how to do it). I have come home to dinner waiting for me several nights now: chicken in a lovely white wine sauce last week and cottage pie tonight. And they were both AWESOME! Thank you, Kyle -- and Joy of Cooking :).

My boss and friend Suzanne could also not have been more supportive. She has sat and listened to me, worked with me to figure out the leave time (using a combination of vacation time, comp time, and sick time -- we are also looking at the sick leave pool that the UT System has), told me that my job is safe, and best of all, made me laugh. That is a HUGE load off my mind. She also, get this, told me that if I have to have chemo, she will shave her head in solidarity with me, lol! I'm not sure if she was joking, but I kind of think not :).

Two of my high school classmates that I have reconnected with on Facebook, Frankie and Alesia, have told me that they want to help after my surgery (or if I have to have chemo) by hiring a maid team or meal service or something else I may need. They want to organize other long-distance friends to help as well. Wow. Just wow. I haven't seen these women in almost 30 years; I'm just blown away. I don't know whether I will need anything like this, but the thought that it's there if I do is such a relief.

One of my friends from work did the Komen 3-Day Walk last year and has been planning on doing it this year, too. Last year, she walked in honor of her aunt, who is a breast cancer survivor. This year, as soon as she heard my news, she emailed me and told me that she'd like to walk in my honor as well. That was yet another point at which I cried. Her name is Kathleen Marquez Houston, and she will be walking 60 miles over three days to raise money for breast cancer research. I will post the link to her fund-raising page as soon as she has it up. My friend Jamie in Rochester Hills had planned on doing the walk this year but injured her foot/ankle; she still raised over $4,000 for Komen.

My in-laws (particularly Carol and Paul) have been incredibly supportive, offering to come and stay at the drop of a hat, should we need them. Their outpouring of love and messages of encouragement are overwhelming.

Again, I can't thank you all enough for your well wishes, support, friendship, and love. Such sweetness to come out of such adversity. If I have forgotten anything or left anyone out, I blame it on the Xanax that I took a half-hour ago. I'll post tomorrow post-scans if I have the energy.

A Force of Nature

2009-08-15T20:35:00.000-07:00

Kyle and I went to meet my my surgeon, Dr. Mary Brian, for the first time last Monday. I didn't know anything about her other than what Dr. Rice had said: she's one of the best in the area, she's a breast surgery specialist, and the other doctors in her practice also specialize in breast care; the practice is the Breast Care Center of North Texas in Bedford (about 45 minutes north of my home). I had also heard from an OB/GYN friend of my supervisor's that she (the OB) would go there if she had gotten my diagnosis. Dr. Brian gave me a brief physical exam and looked at my mammograms and pathology report. We then met in her office for about 30 minutes, where she told me that her initial recommendation is mastectomy with reconstructive surgery. Wow, the good news just won't stop coming. Her reasoning seemed sound when she explained it, and she's very competent at communicating complex medical stuff. Since I have next to no knowledge of all this, I'm grateful to have a surgeon who can talk like a real person.

She tells me that I have a tumor that is probably 3-4 cm in diameter, and in order for her to go in and get all the affected tissue as well as another centimeter or so of healthy tissue all around, a lumpectomy probably won't be feasible. She also tells me that because the cancer has already grown outside of the milk duct where it started (i.e., the "invasive ductal carcinoma" part of my diagnosis mentioned in my last post), a mastectomy is the best option. She explains that they will take the sentinel lymph node out during surgery, and a pathologist will cut and examine it three different ways. If this lymph node is clean, then they all are clean because they all sort of line up after that one; that's why it's called the sentinel node. She also explained that the first step of reconstructive surgery can occur after the mastectomy, but frankly after I heard the "M" word, I think I got some stuff confused. I do know that a plastic surgeon will be handling that part of the surgery, should I decide to get it done. She tells me that she can't yet say with any certainty what stage I'm at or whether I will have to have chemo; they will know this when they test the lymph node. The next real shocker is that she says I'll have to take three weeks off work to recuperate. I just started my job in February; I don't have three weeks of sick leave. More on this later.

I am again crying, trying to get control. She waits patiently. Kyle asks lots of questions, and she answers them all very thoroughly. I have to say, I'm impressed. I really like this woman, despite the fact that she's telling me the worst medical news that I have ever received regarding my own health, well, outside of the cancer diagnosis. She tells me that she will know more if I have a breast MRI, bone scan, and CT scan; she will get an indication of whether the cancer has already spread outside my breast tissue. I agree that this sounds like a good plan. She also wants me to see a plastic surgeon; again, cool with me.

Next she has her nurse, who seems more like a patient facilitator, come and talk to us. Her name is Kelly, and she tells us that she's a 10-year breast cancer survivor; she also had a mastectomy, so she knows where my head is. Because I, of course, am still crying off and on. I tell her that I have very limited amounts of sick/vacation time, so I'd like to consolidate all these scans if possible. She says that's totally doable, and she will get approval from my insurance and have the imaging center at Baylor Irving call me. And you know what?? She did exactly what she said she would. She also tells me that Dr. Brian only works with three plastic surgeons, and one doesn't take my insurance; the other two are really competent and again, highly recommended. So we go with the closer of the two; he's in Fort Worth. Kyle and I are seeing him next Thursday.

So now I have an appointment for a breast MRI, a head-to-toe bone scan, and a torso CT scan for Tuesday morning at 6:30. Gah! I AM SO SO SO NOT A MORNING PERSON! This is going to take about 6 or 7 hours, I'm told. Oh, and more good news: the breast MRI is again the thing with the holes in the table, but this time they will be doing both. LOL! I did ask the woman at the imaging center whether they would have to be under compression, and she said no. Thank whatever gods there may be for that. I will have an IV and they will give me lots of injections of radioactive agents and dyes through it. I wonder whether I'll glow in the dark :)??

They ask me if I'm claustrophobic, which of course I am, so I'm freaking out a bit about the MRI, as well as all the rest of this stuff, and talked to my friend (and supervisor) Suzanne about it. She's like, "Have you ever taken Xanax?" Me: "Nope, but my dog has a prescription for it because of his storm phobia." Suzanne: "Call Dr. Rice." And then all kinds of stories about how well it works to alleviate anxiety. So I call Dr. Rice and tell her that I'm really nervous about the MRI because of my claustrophobia, and she's like,"Have you ever taken Xanax?" Hehehehe. I pick up my prescription on the way home Friday night; I haven't tried it yet. Supposedly it will help me sleep as well, which would be AWESOME! I have horrible insomnia, especially when I'm worried. Actually, I take that back. I just have horrible insomnia all the time.

Kyle and I have been talking a lot about what we think about Dr. Brian. Kyle's much less willing to trust than I am, not nearly as quickly anyway. So I ask Suzanne if her OB friend can elaborate on why she would go to Dr. Brian if she got my diagnosis. Suzanne forwards me the response from her friend, who wrote (in part): "Mary Brian is a force of nature. She is an excellent surgeon and trained in an era where women didn't become surgeons. She has no problem kicking people's ass for the benefit of her patients. She was a general surgeon for years with the good old boys then started doing only breast surgery. Most other mastectomies are done by general surgeons doing gallbladders, appendixes etc. She probably does about 12-15 surgeries a week...which is a lot." She wrote a bunch of other stuff about the other two doctors (a radiation oncologist and an oncologist) in the practice and how fabulous they are and how well they communicate with each other. I cry yet again when I get this note because I'm so relieved to hear that my surgeon is so highly regarded by another physician, and I really like the thought that I have a surgeon who can kick ass! I have never even thought about placing my life in a stranger's hands. I wonder what it feels like to be her? And I wonder whether this force of nature will be strong enough and smart enough to defeat the negative force of nature inside of me?

And so it begins....

2009-08-14T19:58:00.000-07:00

I'm assuming that you are reading this post because you're a friend of mine on Facebook, or maybe you got an email from me, or maybe you play World of Warcraft with me. Maybe we've never met in person (I have many online-only friends) or maybe we haven't seen each other in 30 years. Whatever the case, welcome. I'm glad you're here. Feel free to read what you like, but don't feel that you have to leave a comment. And I will write when I feel like it, both emotionally and physically.

So let's get it out there. State it quickly, like tearing off a band-aid. I have breast cancer. Here's how I found out.

I just moved to Texas in February and, feeling very guilty that I hadn't seen a doctor since October 2006, finally made an appointment for a check-up with Dr. Laura Rice. She found a lump in my right breast during the physical exam and sent me for a diagnostic mammogram. So about a week later, I show up for the mammogram, fully expecting that they would also do an ultrasound on my right breast and tell me that it was a cyst. So the tech is doing the squishing-my-breast-until-my-eyes-water thing she has to do; she takes two shots of my right breast, then two of my left. She mumbles something about calcifications in my left breast and starts changing stuff on the mammogram machine. I'm like, "are we done?" Her: "No, I have to get some magnified shots of your left breast; you have calcifications." Me: "What's that?" Her: "They are normal in some women, but we need more views." More breast squishing, and then an ultrasound of my right breast, and guess what?? It IS a cyst. However, and isn't there always a however, I'm told that they need my films from my last mammogram. I make a call to Kyle (my husband) and ask him to please get me the number to my doc in Michigan, whom I call and after being transferred about five times, I finally talk to someone in the bowels of the Henry Ford Medical Center, who tells me I must fax a written request for those films. Get back to work and fax the letter. Now I wait. Nervous. Because I've been told that if my old films show calcifications, we are ALL GOOD -- that will mean they are normal for me. If not, it's biopsy city, baby.

Couple of days later, I get the call. No calcifications on my old films. Shit, shit, shit, shit. I schedule the biopsy. I'm told I will have to lie on my stomach on a table that has a hole in it for my breast to hang through. This sounds like so much fun! They will numb my breast then do a needle biopsy. OK, I can deal.

I show up, sit on the table, the tech asks some questions, then has me lie down as instructed. What I haven't been told is that my breast is not only hanging through this hole, but it has to be under compression the whole time. Argh! And she's having trouble getting me positioned properly so that she can take about 30 mammograms (well, it was probably more like 10), AND has to walk out a couple of time to get help. I'm like, "Hellloooo! Can you at least shut the door? Boob hanging through a hole here!" So basically, I have my boob through this hole, being pulled down and compressed, with my head twisted to the side and my shoulder and back all contorted for about 45 minutes. It got pretty damned uncomfortable. And needle? Forget that shit. It sounded like a gun going off when it went in (they do actually call it a gun) and then drilled into my breast with a sound like the grinding of a really slow dentist's drill. They put a titanium chip in where they took the sample as a marker. I wait for results.

Three days later, the radiologist who did the biopsy gives me the news: intermediate and high-grade ductal carcinoma in situ and invasive ductal carcinoma (grade 1 tumor). He recommends that I contact my primary care physician immediately for a referral to a surgeon. I've never talked to a surgeon before; I've never even had stitches. I call Kyle and tell him the news; I really don't remember his reaction. I think I was crying too hard to hear him.

I call my doctor, sobbing, of course (me, not her). She tells me about this fabulous surgeon who has a practice where everyone specializes in breast cancer. They do nothing but boobs. Period. Cool. So, I call, make an appointment. Go down and tell my boss, Suzanne, who has known about this since the mammogram. We're both kind of sitting there in shock, me wailing about how much I need my mom and sister, and how goddamned angry I am that they aren't around to help me through this. Thank my lucky stars I've got a boss who can sit and listen to me vent.

So that's how I found out. I have breast cancer. Cancer, the fourth astrological sign. I just read that on Wikipedia, where I also learned that "under the tropical zodiac, the Sun enters Cancer on the moment of summer solstice by definition, or roughly on June 22, leaving it around July 22." I think it's funny that Dr. Rice first felt that lump in my righ breast on July 22. Both funny-ha-ha and funny-weird.