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!

Ahh, the wonders of a shower!

Hi again,
First, I realize that my last post was a book! I apologize for being so long-winded, but as a few others have noted, typing all that stuff out helps me organize my thinking, so it is therapeutic.

I have a few pieces of good news. First, I saw Dr. Faddis on Tuesday, who removed the drains and who said that my skin is healing nicely. However, some of the skin on the left nipple was "sloughing" off. So, he asked that I go in and see Dr. Havard. So, I saw Dr. Havard yesterday afternoon and while the upper layer of skin had died and was sloughing off, there was some new pink healthy skin underneath. So, we'll just wait and see. "Pumping up" starts December 10. We'll see how that goes. The best part is that Dr. Havard took off the ace bandage (which had been binding up my chest for 11 days!) and said I could start showering! One never realizes how good a shower feels until you're deprived of it for awhile! I luxuriated in it for awhile this morning! Whew!

I also found an article that relates to Her-2 positive breast cancers. I'm not sure I understand all the stats, but this is what I think the article said. First, there is a pretty strong correlation between Her-2 positive cancers and having 3+ positive lymph nodes. Generally, I think that means that Her-2 positive cancers are aggressive and tend to spread to the lymph system. But with this group of tissue samples, the people who saved the samples didn't have long-term data on the rate by which these women had relapses or died. So, they studied a second group of breast tissue samples. All of these samples, first of all, were lymph node positive. And, they found a strong correlation between cancers that were positive for Her-2 overexpression (like mine) and relapse and death. In other words, it seems statistically significant that Her-2 positive breast cancers in node positive women tended to relapse sooner and their deaths were earlier. This, from what I have read in another book related to Her-2, is the first study to look into Her-2 positive cancers and it is this study that all the other websites and recommendatons are based on - namely, Her-2 positive breast cancers tend to be more aggressive, relate to relapse and metastases and earlier death.

But, my lymph system is blocked, as I noted in the last blog. Soooo, does this mean I can breath easier? Not yet - I still need to find data on Her-2 positive, lymph node negative breast cancer, if such data exist. Or, better yet, Her-2 positive, no lymph drainage women.

The other good news is that I got to thinking about the prior radiation I had to the right breast. I have been told by Dr. Havard that radiated tissue loses some of its elasticity and then I got to thinking about how that might affect my blood supply. I noted that post-surgery, I had a lot less fluid drainage on the right side (lymph and blood) than the left. So, I found a website that said something that "radiotherapy lowers the blood flow to the area" and also that "radiotherapy can sometimes break blood vessels in the area". Now, whether this is a long-term affect (i.e., it would still affect that tissue after five years) or short-term (in which the tissue recovers) was not answered, but given that the drainage on the right side was about half that on the left, I conclude that the blood supply to the right side was also compromised due to the radiation. Again, that might cut down on any paths the cancer may have had out of my breast, which is a good thing.

Okay, my outlook is improving . . . thanks for listening!
Dee

Words of Wisdom

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

Giving thanks and some bad news

Hello everyone,
Since this is Thanksgiving, I thought that I would give my own thanks on this day. First, and most obviously, I am thankful I am alive. Second, I am thankful that the nausea is away, although some smells still get to me. Nausea has really been the worst part of all the cancer treatments. Third, I'm thankful that my family, friends, and colleagues are there for me, giving me support in whatever way they can. I appreciate it! Fourth, I want to thank all of those who sent flowers, plants, and gifts while I was in the hospital and afterwards: Anna Kerttula, the Dean's office at CLA, Paula and Dwight, Rick and Tammy, "the Rogers, Rogers, Webbs, and Kohlers", Kevin, Rena, Joan Gross, and Donna Champeau. Thank you all, very much! They're all very much appreciated and the plants and flowers have brightened up my home! Fifth, I wanted to make sure to thank everyone who emailed or called to check up on me and I wanted to just let you know that if I haven't yet responded, I will try to in the next few days and if I forget, please forgive me and I hope that this post will do for now! Sixth, I'm thankful it's Thanksgiving Day and I don't have any nausea and will be able to eat! Yay! And, finally, thanks to Sunil and Court for the first delivered meals and there's one coming on Saturday! Yippee!

So, now the bad news. The pathology report came back and the pathologists found cancer THROUGHOUT the breast on the right side. But, it wasn't a tumor. It was instead "tendrils" of cancer cells spread throughout the breast. So, they say that it's 5cm large, but it's more like an octopus or a spider. And, because it was tendrils, it wouldn't be detectable on a mammogram nor by touch. I talked to Dr. Kenyon last night (as I didn't get a clear picture from Dr. Faddis's office) and he said that lobular cancers sometimes throw out these tendrils. So, this is probably a recurrence. As Dr. Kenyon said, this is not the news we wanted to hear. This now means that he's encouraging me to undergo a course of chemo (either a "traditional" mix of cytoxan and taxotere or a new regimen out of England), then have my ovaries removed and take Femara or Arimadex, and then go on Herceptin.

I am deadset against the chemo. I've done it before and it was really psychologically the worst part of the treatments for me. The justification for chemo is to stop it from spreading elsewhere in my body or to stop it growing elsewhere if it's started. So, here's my "twisted logic" about it: first, the chemo, to some extent, didn't help me the first time around; while it doesn't seem to be elsewhere, it also didn't stop it from growing in the breast; so, I have this germ of an idea in my head that it doesn't work, so why should I put myself through it again? Second, I fear it and have lots of anxiety and apprehension about taking it again. As I posted before, I think that fear and anxiety of something tends to decrease the effectiveness of it. And, third, several people have encouraged me to do chemo, but since I experienced fatigue last spring, I have tried to only do things that I want to do, not what others want me to do. I need to do it for me and if I think it will be effective. And, fourth, prior to surgery, they did a "lymphosyntigram" (sp?) in order to map my lymph system in the breast. They basically inject a radioactive material into your breast and then take pictures of that radioactivity for about 30 minutes. Based upon that map, the radiologist and Dr. Faddis said that my lymph system in my breast didn't drain anywhere - it pooled in my breast. (Which might actually explain why I still had some inflammation in that breast the day of surgery because of the biopsy on Oct 1.) So, I take this to mean that there wasn't a clear pathway out of my breast since they took the sentinel nodes last time, which means that any cancer stayed in the breast and didn't go beyond that. Couple that with the pet scan, chest x-ray, and blood tests which were all clear.

I do want to assure you that I haven't completely decided against chemo; I feel like I'm Gandalf in the Mines of Moria, when he sat for a long long time beside two doors trying to decide which one "felt right". So far, the no chemo path feels right. But I will sit at those doors for awhile before making a final decision. Fortunately, I have time to do that. I will have my ovaries taken out and go on an aromatase inhibitor (Femara or Arimadex) and then go on herceptin.

So, the wind has been taken out of my sails and I think my ship started to list some yesterday evening. But after watching a movie with my brother Scotty and my folks and a good night sleep, my ship has righted myself and I'm blowing into the sails again. I can feel you all blowing with me! And, for that, I thank you!
Dee

Home at last

Hi everyone,
I came home yesterday, around noon. Man, I am not sure what these pharmaceutical companies think they're doing! Or why our society insists on little pills that are supposed to fix everything. I was so nauseous for 2+ days. First, they made sure that pain meds were in my IV and I suppose that that is legitimate. Then, I was nauseous from the anesthesia. Then, then also gave me drugs to alleviate the nausea. Plus antibiotics. I was given a "PCA" that allowed me to self-administer morphine. I was advised by most everyone to stay on top of the pain, so I administered the morphine almost as often as I was allowed. I believe I threw up the night after my surgery and then Saturday night, I woke up in a sweat (the heat had been turned up high in my room) and I itched all over so I requested a bed bath and that really helped. But when I sat up to get it, I threw up - twice! - in the space of about 15 minutes. Anyway, I did finally slept and I administered the morphine when I woke up - but decided to stop at 5:30am. Then, they gave me a new anti-nausea med (Fenergan) and something else to keep my stomach acids down at about 8:30 and then Toredal (sp?) at 9:30am which is both a pain med and an anti-inflammatory. After that, I told the nurses and my family and Scott that I was going to refuse all meds except for the antibiotic and Tylenol. Everyone kept asking me if I was sure and I was absolutely sure. I still felt woozy through Sunday, with only popsicles to eat and they made me walk around. I made it through Sunday night with only Tylenol and still Dr. Faddis on Monday morning asked me whether or not I wanted pain meds. I refused them although he wrote me a prescription. I had a popsicle about 3:30am on Monday and then about 7:30, was able to eat some crackers and grapes and as the day wore on, I ate more and more, although smells of certain things (like this pasta salad mom and dad brought home) made me want to turn away. My point is that they give you a drug for pain, then a drug for the nausea and another to keep your stomach acids down, all after having had anesthesia, antibiotis, morphine, and other anti-nausea meds. You're so drugged up, you don't know what's actually making you sick! It's like there's a drug to fix something and a drug to fix the side effects of the first drug, etc., etc., with no consideration of overall effect of all the drugs on a person's system. Okay, enough of that rant!

So, I'm doing okay today and the nausea seems to be going away. My stomach probably won't be able to tolerate anything spicy for several more days - thank goodness Thanksgiving has mostly bland foods! My pain is about a "2" on a scale of 0 to 10, with 10 being high. Tylenol seems to keep that at bay. Now, all I'm taking is the Tylenol and the antibiotics.

I wanted to also thank everyone who came to visit me in the hospital - I think the nursing staff was a bit surprised at how many visitors I did have. One nurse, Stormy (who was really great, by the way; she was my favorite) mentioned that she was happy to see how dedicated my family was to stay with me while I was in the hospital. My sister, especially, was able to stay late a couple of nights and was always happy to get things for me. My folks were there pretty much from about 7am to 7 or 8pm each night and my brother Kevin was there a couple of afternoons for a few hours (having to wait until the football games he wanted to watch were over! LOL). Scott, too, was at the hospital for several hours on Friday, almost 8 or so hours on Saturday, and about 6 hours on Sunday. I appreciated all of my other visitors, too, and while I wasn't much company, I was glad you all made the effort. So, thank you all very much! Take care!
Dee