Near Tears - Need a Distraction

Near tears? Actually, when talking to my two grad students in the last couple of days, I've actually teared up, especially when they asked how I'm doing. One of them even told me today that I don't need to put a brave face on for her benefit!

But in truth, I put a brave face on because it makes me feel better. I'm tired of feeling sorry for myself.

I was feeling nauseous this morning - I took two of my nerve pain pills (which is allowable), but I found that it's too much for my system.

I am fatigued. I slept decently last night and so was able to operate fairly normally this morning. But by the time I got home, I felt tired. Work was a welcome distraction.

I still have a stuffy nose. And the pain pills wear off after a couple of hours or so.

My plan is to endure the next few days. I am trying to focus on the fact that by this time next week, I might be heading home. Surgery will be done with and I will no longer have a growth under my armpit.

My dad is also frustrated because he's not able to do much and when he does, he gets tired.

I think we both need to foci on what we can do, not on what we can't do, right dad?

Depression as Repressed Anger

A friend just told me that a social worker told her that depression is repressed anger. So, it's good that I'm getting that anger out there.

Back on Xeloda

Today, I started taking Xeloda again, although at a slightly reduced dose than last time - I take 3 in the morning and 2 at night. I really loved last week, when I didn't have to take it. I felt much better since some of the nastier side effects - the inflamed mouth, red zits, and slight nausea - were not present. On Tykerb, I just seem to have little white zits, and of course, trouble sleeping.

So, I stalked up on sweet-tasting carbs to help me counteract the nausea, as well as some diet Sierra Mist. I'm still using the aloe vera gel on my face and I plan to swish with the aloe vera juice tonight to maybe fend off the mouth sores.

I have an acupuncture treatment this week, which I'm sure will help me cope. But, so far, so good. No nausea today, just thirsty, so I'm trying to drink lots of water.

I was depressed earlier today - because I knew I was starting Xeloda again and also because I didn't sleep well last night. I'd slept well the night before, so I hoped that I would sleep well again. Being tired really does affect my mood.

I like being productive - I don't usually like to sit around watching TV all the time, especially when there's stuff to do around the house. I really wanted to be lazy, today, though. But I hadn't vacuumed in a couple of weeks and the cat is beginning to shed more hair, so I really wanted to get it all cleaned up.

I did get in a good walk today - it was gorgeous here - partly sunny and 60 degrees. The daffodils in front of my kitchen window started blooming yesterday and I saw some little pink buds on the flowering plum tree out back today, too. That's always good to lift one's mood!

The Mines of Moria

So, I've been reading this book by Bernie Siegel entitled "Love, Medicine, and Miracles". He talks a lot about how survivors of major illnesses tend to be those people who are more positive and at peace with themselves. Among some of the other suggestions he gives to become more positive is one where he asks patients to draw themselves, their disease, and their treatment. This would give the patient and hopefully the doctor some idea of the mental state of the patient and what they really think about their treatment options. I didn't actually draw anything, but I thought about what I might draw. I couldn't come up with anything for awhile, until I remembered an earlier post I had on this blog. It was about Gandalf sitting before two different doors in the Mines of Moria. (Okay, only Lord of the Rings fans will get all of this, but the more I think about it, this image really is resonating with me.) I felt that I was at a crossroads and needed to decide which door I should go through, like Gandalf.

What is interesting about that image is that both paths lead through darkness and that was what I was feeling this week. In the path they end up taking, Gandalf seemingly dies and is lost to the rest of the group for awhile, but the rest of the group makes it out to the realm of Lothlorien where they are able to heal for awhile before continuing on their journey. In a way, my own path seems like that – a path through darkness (i.e., more treatments), suffering a loss (i.e., the idea that I would have a normal life after surgery – which I now realize won’t happen), but making it to a place where I can heal and enjoy some level of peace (i.e., I’ll be okay in the end). The fun thing is that while Gandalf is lost to the group for awhile, he does end up returning in the end, which means, I think, that I will eventually enjoy a “normal” life. Now, how is that for a psychoanalysis of myself!

I have more or less decided on what I will do. In addition to the tissue expansion, I will go through with the Herceptin treatments (weekly injections for a year, although sometimes, they switch to every three weeks), having my ovaries removed and going on aromatase inhibitors. I found another woman's blog (the assertive cancer patient) about dealing with breast cancer and she said something like, "I love Herceptin! It doesn't have any side effects." Her own cancer has metastasized to other parts of her body, and she's been taking Herceptin for five years. Also, my concerns about heart damage were allayed somewhat because I found that those who tend to have heart damage are much older, perhaps in their late 50s/60s. Prior to treatment, they will check your heart function and then monitor it over the course of treatment. I found some information on side effects of aromatase inhibitors - holy crap! They include: some nausea or dizziness, hair loss, achey joints and bone pain, and fatigue. But generally only about 25% of patients feel those side effects. (I met Roy Arnold - retired provosot at OSU who also had breast cancer - a few weeks ago and he is on Femara, I think. He seemed to be doing fine.) Another point that Bernie Siegel makes is that if patients think they will have side effects, they will. Those who believe that the treatment will work and, further, they believe they will not have side effects, don't tend to have them. My plan, then, is to learn how to meditate better (another thing Bernie Siegel suggests) and start adjusting my thinking about both Herceptin and the aromatase inhibitors and see them more in a positive light rather than dreading the negative effects. That way, I will feel that I'm doing everything I can to keep the cancer from spreading anywhere else.

I am, however, going to refuse the chemotherapy. I don't think there is any kind of mind adjustment I can make there. My body and mind remember too viscerally how I did the first time and I don't think any amount of meditation will help erase that memory. And, to some extent, I think I am still dealing with the effects of chemo from the first time. I have been fatigued for quite awhile, and while other stress certainly compounds that, I think those other chemicals are still there somewhere.

Okay, there's another book to read . . . again, everyone, I appreciate your support and you reading this blog.
Deanna

A hard week

If I were to characterize how I felt prior to surgery, I would say that I was doing okay (as many of you noted) with periods of anxiety. Post-surgery, especially in the last week, I would have to say I have depression. It's taken me a few days to first identify it and then figure out why. Mostly, I'm depressed because: 1) I had envisioned what my next steps would be, but the fact that cancer was throughout the breast tissue means that my prior plan no longer applies; instead, I have to figure out what I will do, particularly in terms of making difficult choices like suffering from both long and short-term side effects (e.g., with chemo, I may have nausea, hair loss, and nerve damage in the short term and it might contribute to my long-term fatigue) or making sure I do what I can to be sure I'm around for a long time; 2) I don't like not having a plan in place - it's depressing - I hate being in limbo and at the moment, I am because I'm in an information-gathering mode and some of the info I need needs to come from doctors' opinons about my risk of recurrence or metastases and I won't know that info until next week; 3) I also realized that my treatments will probably extend through the next year and where surgery seemed the hardest part, now I'm pretty sure that I'm facing a year of Herceptin injections; basically, the light that was at the end of the tunnel has disappeared; 4) I also had to set aside some of my information-gathering activities to work on some NSF proposal reviews; the pressure to finish them combined with my frustration over being distracted from what I really want and need to do made me miserable; and 5) I'm not able to spend as much time with Scott as I might like and there are times when we can't even talk on the phone, so I end up taking it out on Scott, getting mad at him and pressuring him to do more than he really can. Ultimately, Scott has received the brunt of all of this and I want to apologize to him for that. And, oh yeah, a couple of days ago, I found myself looking at people walking around town or on campus and I thought, "these people don't realize how lucky they are because they don't have to worry about cancer and making choices about treatment"; I found myself resenting others for living "normal" lives.

Scott sorta suggested yesterday that it would be good for me to have some distractions. I resisted that idea because I felt I really needed to focus on treatment decisions. However, today, I think that he was ultimately right. I participated in a four-hour teleconference today related to those NSF proposal reviews and oddly enough, instead of resenting the distraction, I enjoyed talking to the rest of the panel about these proposed research projects. Some of them were quite exciting. Anyway, it helped me to change my outlook and reorient my thinking from victim to active participant.

I also had dinner last night with my colleague, Janet Lee. We went to Evergreen - yummy! We chatted about a lot of stuff, but mostly about my treatment options. She helped me to reaffirm my decision not to do chemo (also bolstered by a conversation with another colleague, Melissa Cheyney). In addition, she reminded me that while other people around us seem normal, we have no idea what sorts of things they are dealing with and then Janet told me about a neighbor of hers who died while driving home on Hwy. 99W - a trailer disengaged from a vehicle going the other way and killed her on impact. This woman, apparently, had three kids. So, it helped me to realize that things could be worse.

I also got to thinking earlier today that from the time I was diagnosed to surgery, I never really felt depressed; scared and anxious, but I never felt depressed or felt grief. A lot of you said that you would've probably been depressed given the news of a recurrent cancer and were amazed that I didn't feel that at all. Well, this past week has been my time for feeling depressed. However, I think I'm coming out of it all.

Other than that, no new news in terms of treatment decisions.

However, I do want to say thank you to a lot of people: for meals, I need to thank Sunil Khanna, Court Smith, David McMurray, Karen Mills, Bryan and Jenna Tilt, Loren Davis, Dave and Nehani Brauner, and Janet Lee. I have more meals coming up, from Melissa Cheyney, Joan Gross, Donna Champeau, Irene Rolston, and Sunil again. I also need to thank my parents and Scott for helping me with things around the house - housework, putting up the Christmas tree, etc. Also, I've received music from Mary Braun, Paula Long, and Greg Hyatt. I received orchids FedExed from Hawaii from Diane, Greg, and Jasmine Hammerstad. Greg Hyatt and Susanna Love sent me a book of essays by Carl Sagan. Paula Long also sent Sudoku puzzles. Linda Howard bought me a book by Bernie Siegel. Parcella Provence loaned me some other books by Bernie Siegel. Tammy Webb gave me a teddy bear that has a microwavable warmer inside it. I'm sure that I've forgotten some things . . . perhaps next week, I will be able to get out some thank you cards. So, for now, I hope that this post suffices to communicate how thankful I am for your generosity. Being surrounded by good food, gifts, flowers, and plants does help remind me how fortunate I am. So, thank you!

Decisions, decisions

Hi all, again,
It's been a rough couple of days while I begin thinking about the next steps in my treatment and recovery. In preparation for meeting with Dr. Kenyon on Monday, I did some research online - reading research reports and such about the various treatment options. The bottom line is that, in general, Her-2 positive breast cancers are more aggressive, and more likely to recur and spread to other organs. But, interestingly, I haven't been able to find any statistics (at least, not yet) that say to what extent (i.e., which percentage of Her-2 positive cancers) it does these things. The uncertainty is driving me crazy, because if it's a small percentage (i.e., 10 or 20% of Her-2 positive cancers spread or recur), then I might opt not to do Herceptin, but if it's larger, than I will.

So, below is Dr. Kenyon's best guess for my treatment. He said that this is what they would recommend in a worst-case scenario (which he didn't define, but probably means a large tumor, positive lymph nodes, and maybe even cancer spreading to other organs). Here's the prognosis for different treatments:

surgery alone (mastectomy) - 80% chance of recurrence or metastases beyond the breast

surgery plus ovary removal & taking aromatase inhibitors as a little pill - cuts the risk an additional 1/3 or down to 55% chance of recurrence or metastases

surgery plus ovary removal/aromatase inhibitors plus chemotherapy (carboplatinum and taxol) - cuts the risk an additional 20% (20% of 55%) which means an additional 10% down to about 45% chance of recurrence or metastases

surgery plus ovary removal/aromatase inhibits plus chemotherapy plus Herceptin - cuts the risk an additional 50% of the 45% down to about 20-25% chance of recurrence or metastases

All the extra treatments beyond surgery are to either get rid of cancer if it's already in my body or to prevent it from going elsewhere.

BUT, I don't fit the "worst case scenario". Negatives are that the whole breast had cancer throughout the tissue and also that it's Her-2 positive. Estimates are that these tendrils have been there in that breast for 3-4 years. Positives are: 1) my lymph system in my breast did not drain anywhere, meaning that there was no lymph node involvement. The radioactive substance they gave me prior to surgery never left my breast via the lymph channels, not even three hours after administering the radiation; 2) my "tumor", such as it is, is not a lump, a full mass; instead I had tendrils scattered amongst normal breast tissue; 3) the margins of the breast tissue were negative for cancer, although those tendrils seem to have reached within a millimeter of the edges of the breast tissue; 4) it did not spread to the other breast (which was clean and there's about a 20% chance that Her-2 positive breast cancers spread to the other breast); and 5) all the previous tests (blood tests, chest x-ray, and pet-CT scan) showed no sign that it had spread anywhere.

Okay, cancer can spread in three different ways: 1) through the lymph system; 2) through your blood; and 3) through invading surrounding tissues. Indications are that: 1) the lymph system was blocked and 2) although close, the tendrils hadn't invaded the surrounding tissues. And, Dr. Kenyon said that after surgery, treatment usually involves both chemo and radiation - the chemo keeps it from spreading elsewhere in your body (i.e., organs that have a decent blood supply) but does not seem to be as effective as stopping the cancer in the breast and the radiation is supposed to stop it from recurring in the breast. Well, I had chemo five years ago, so I'm thinking that that destroyed whatever cancer may have been elsewhere in my body. The radiation - well, that might've caused the cancer in my breast to mutate because now it's a medium growing Her-2 positive cancer where before it was a slow growing Her-2 negative cancer. So, what Kenyon said was that the chemo is not as effective at stopping recurrence in the breast because the breast doesn't have a great blood supply. My conclusion: the only pathway out of breast (the blood system) for cancer to spread isn't great. This, to me, justifies not doing chemo since I would get relatively little benefit from it.

In addition, Kenyon called me a "vexing case", which might worry some people but for which I was happy because that means that I don't fit the standard profiles - all the recommendations are based on women with the worst case scenario mentioned above. In fact, I wanted to make the same argument with him - I don't fit the statistics and if I don't, the same treatment recommendations may not apply. So, he's going to present my case to the local tumor board (unusual tumor, blocked lymph system, prior treatment) and see what they say and he also recommended that I meet with another doctor - a Dr. Luoh at OHSU who researches Her-2 breast cancers. I'm hoping Dr. Luoh has some numbers for me (in terms of rate of recurrence or metastases for Her-2 positive cancers) and also maybe has seen a case like mine. That appointment is Dec 11.

In the meantime, I am doing much better today and especially after laying out my understanding of things in this blog, I feel even better about the choices I think I will make. I don't feel as scared that the cancer has spread elsewhere and I am not questioning my gut reaction to NOT do chemo any longer.

Our department secretary (Loretta Wardrip) has figured out for me (in less than 15 minutes!) how to post a picture on this blog (sheesh - I tried for at least 30-60 minutes before) and she will try to figure out how to post an audio snippet! This is kinda cool because this means maybe I can even learn how to post some of the cartoons and other jokes people sent me! That's about enough doom and gloom, don't ya think? Thank you, Loretta!
Take care,
Dee