Monday, December 31, 2007

The Manogram



Hello again,
So, here's 2 cartoons one of our students (Courtney again) found . . . both based on the mammogram. Fun, huh? I'll try to get a joke and another picture or two tomorrow (but don't hold your breath!).

I spent today running some errands - one in particular was to gather all of my son's pictures with Santa and put them into frames. Most of the pictures I had were 5x7 or 8x10 so I asked my brother Scott to scan them so I could print out 4x6's for the picture frames. Boy, there's now 8 pictures of him from 2000 to 2007! It was fun to go back over the older pictures of him as a baby/toddler. This is a project I've been meaning to do for a couple of years now! Whew! Does anyone else have lists of stuff they've been meaning to do but they always get put on the back burner. Sigh . . . I guess that's life.

Happy New Year!
Dee

Sunday, December 30, 2007

Some boob humor




Happy New Year!
So, I promised almost two months ago now (sheesh! where has the time gone?) that I would post some of the jokes and photos from my Boob Ball. First, I'll see if I can post a couple of the photos . . .

The first photo was a salmon spread with a candy on top made by friend and colleague Sandy Tsuneyoshi and the next picture shows these little cucumber shells with a crab filling and topped with ?? (can't remember now), made by the boyfriend of Courtney Everson, Dale. The next one is a picture of a boob cake made by one of my friends and colleagues, Alison Davis-Whiteeyes. This entry won first prize in the "boob food" category at my Boob Ball, as voted on by the other folks at my party. All of them were edible and the cucumber/crab one was delicious! There's a couple more I'll post, too.

Anyway, tomorrow, I will work on uploading some of the cartoons - just tried, but something went haywire. And, if I have some of the jokes on file here, I will post them, too.
Take care and Happy New Year!
Dee

Thursday, December 20, 2007

Happy Holidays!

Hi everyone,
I haven't posted in about a week and I just wanted to tell everyone that I'm doing okay and in good spirits, especially now that I've made a decision about treatment. I talked to Dr. Kenyon the other day and we more or less decided that I would start Herceptin soon after January 7, 2008. I'll have a year of injections, given every three weeks. At some point, when I get my permanent implants, I'll have my ovaries removed and until then, I may be given a monthly injection to stop my ovarian function temporarily.

I've spent this week in Christmas preparations - my mom, my sister and her kids, and Eddie and I made 8 1/2 dozen cookies on Sunday, I finished my shopping on Monday, and then Wednesday, I spent all day wrapping presents while watching Heroes on DVD (I bought the first season for Scott and I to watch). On Tuesday, I went up to Portland and met with my colleagues, Tom Thornton and Arthur Mason, to talk about a project in which we study the affects of ANCSA (the Alaska Native Claims Settlement Act) on Alaska Native cultures and their political force in the state of Alaska. Tom and I had submitted a proposal last year to NSF that was funded - Arthur is interested in it so we had a conversation about how he might be involved also. It was a good conversation, which was augmented by the fact that it took place in Powell's, surrounded by books!

Anyway, have a great holiday! I wish you all the best and thank you so much for reading the blog and sending me your support. I do appreciate and am looking forward to a good holiday!
Love, Dee

Wednesday, December 12, 2007

Pump Up the Jam & A Second Opinion

Hello everyone,
On Monday, I had my first expansion appointment. It was interesting - Dr. Havard first injected some lidocaine and then injected 50 cc's of saline into the temporary tissue expanders. For those of you who don't know, these "tissue expanders" were placed under my pec muscles, but high on my chest, maybe only a couple of inches below my collar bone. They were not placed in the normal area for breasts because that area is still healing after the mastectomy and they didn't want the scar tissue to adhere to these tissue expanders. Then, when it's time to insert the permanent implants, they will "release the muscle" and the new implants will be in the normal place. I also found out that it takes about 450 cc's to get up to a "B" cup - that's nine injections! And, because Havard has a couple of vacations planned in December and January, that means that my expansion appointments will go into at least March. By then, the nurse said that it'll probably look like I have a chin rest!

I had my appointment with Dr. Luoh at OHSU yesterday. And, ironically, while he still really stressed that I should have chemo, what he had to say made me even more sure of my decision NOT to do chemo. First, he feels that this cancer is actually a new cancer and this is a good thing - apparently, the prognosis for "new" cancer is better than a recurrence of an old one. He said that if it was a recurrence, there's a greater chance for a "distant relapse" or metastasis to another part of my body. The chance is less for a new cancer. I also asked him what he thought my chance for a distant relapse was. He estimated 50% (whereas Kenyon thought it was 80%). Herceptin cuts that down to about 25%, ovary removal plus aromatase inhibitors puts it down to about 15% and chemo only gives me about another 5-7%. One of my colleagues, Melissa Cheyney, pointed out that a normal woman on the street has a 12.5% chance of developing breast cancer in her lifetime. Which basically means that by doing Herceptin and the ovary removal/aromatase inhibitors, I'm near the "normal" category, without chemo! So, in terms of quality of life, both short- and long-term, I will refuse chemo. The risks outweigh the benefits. Dr. Luoh kept stressing that he felt it was an early stage breast cancer and he usually wants to treat such cancers very aggressively, and especially since I'm young and relatively healthy, he thought I could handle the side effects. But having gone through those side effects before (while the nausea won't be as bad, I would suffer from new side effects like neuropathy - I'd lose some feeling in my fingers, hands, and feet), I have no desire to repeat them. And, as I said before, I think I am still dealing with fatigue from the first time around - why would I want to add to it?

Well, I'm going to sign off. I had a busy day yesterday - not only was I in Portland all day, but yesterday evening, my department chair hosted a celebratory dinner for one of my colleagues, which was fun, but I didn't get home 'til almost 10pm, which is about an hour later than I usually get to bed! I'm tired - yawning as I type! Take care and thank you again to everyone who brought meals!
Love,
Dee

Thursday, December 6, 2007

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

Wednesday, December 5, 2007

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!

Thursday, November 29, 2007

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

Wednesday, November 28, 2007

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

Thursday, November 22, 2007

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

Tuesday, November 20, 2007

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

Thursday, November 15, 2007

15+ hours and counting!

Well, I didn't expect to write another post, but here I am. I found out today that my surgery, originally scheduled for 10:30am, has been pushed back to 11:45am. The good news is that I don't have to report to the hospital until about 8am. The bad news is that I'll already be hungry! Darnit! I had a massage this afternoon and I am feeling pretty relaxed and also tired. Hopefully, I'll get a good night's sleep. Oh yeah, I ran into a colleague of mine that I haven't seen for awhile. Maria Olaya originally gave me a "tagua" - it looks like a rock, but it's actually a seed pod. A shaman in Columbia gave it healing properties and the first time I went through breast cancer treatments, she gave it to me - it had been painted or dyed blue, my favorite color! Anyway, I brought it out a few days ago and was thinking of her, so it was really cool to have bumped into her again.

I probably won't get another post in until early next week. Visiting hours at the hospital are 11am to 8pm. I expect to be home Sunday afternoon. Next time I see you all, I will no longer have my original breasts. Instead, I will have tissue expanders for awhile. They may look a little strange - supposedly, they place them a little higher on one's chest (and I forgot the reason why). Also, after a few weeks, I will start the process of expanding the tissue . . . so people may notice weekly changes! Just thought I'd prepare you all . . . : )

Many of you called and/or emailed me today to wish me the best and I wanted to thank you all again. With all of your thoughts, prayers, and positive energy being sent my way, I'm sure I'll sail through it all!
Love,
Dee

Countdown

Hi everyone,
As of this writing, I will be in the hospital in 24 hours! Yikes. I'm doing okay, though, considering. Yesterday, I began to feel afraid while I was in the shower. Then, I employed the techniques given to me by Linda Gelbrecht, and which had been reinforced by my counselor on Tuesday. It involves deep breathing and imagining relaxing scenes. And, it helped. I didn't feel anxious or even tense the whole rest of the day. So, you can bet that I will employ that throughout my day today.

Other than that, there's nothing new to report. Now, I'm just looking forward to getting this thing over with. I also want to thank everyone again for bringing jokes, for your humor, and for all the gifts that I've received! And, oh yeah, for volunteering to deliver dinner! At the moment, dinners will be delivered from Nov 18 to Dec 8 . . . it looks like I'll be gaining weight after surgery! So far, I know that on Nov 18, Sunil will bring over a chicken curry dish, and they hope to make nan - which I love! And, Court said that he's planning to bring his broasted salmon on Nov 20. Lucky me!! So, thank you all again!
Dee

Monday, November 12, 2007

A day of running around

Hello everyone,
So, today was a day when I seemed to be talking and thinking about my upcoming surgery all day. I met with my plastic surgeon, Dr. Havard. We talked about what to expect with this upcoming surgery and reconstruction and he answered some lingering questions I had. Scott wanted me to ask whether or not my coughing would hurt the stitches and while I should be careful, coughing usually originates from your abdomen. We also, I think, made sure that the left nipple was not taken so that it could be used in reconstruction later. He also said that he would be injecting 50 cc's of saline into the temporary implants (aka "tissue expanders") once a week for probably a couple of months and that most people usually tolerate that fairly well. We will have to see how the radiated right side responds and whether or not there's too much scar tissue. Then, he measured me so that he can get the right tissue expander in there. Then, I was sent to the hospital to go through the preregistration process and then I met with a nurse (Gail) from Short Stay to do a pre-interview - making sure all my reports were there, how I reacted to anesthesia and other meds in the past, etc. and then she drew my blood as they needed recent blood work.

At that point, it was lunchtime, so I ate lunch there in the cafeteria and ran into a nurse, Jennifer, who administered one of my chemo treatments five years ago. My sister ran into her at work a couple of weeks ago and Jennifer just wanted to tell me that she was thinking of me and hoped I was doing okay. Of all the times I had a needle stuck in me through both of these cancers, I have to admit that Jennifer was the absolute best - I never felt the needle at all. It was nice to run into her, especially since she remembers me.

Then, I chatted with my office manager, Karen Mills, who will be coordinating my dinner delivery schedule. If you are so inclined, contact her if you want to make dinner. I don't cook, so at the moment, since I'll be home-bound for a couple of weeks, dinners will be most appreciated.

After volunteering in Eddie's classroom, I met with Linda Gelbrecht at the Heartspring Wellness Center. I'd worked with her previously on visualization techniques. I caught her up on all that was going on in my life and then she helped me come up with a little routine I can use to help me decrease my anxiety and to maybe help my body bring in healing energy through surgery and my recovery. At the end of the session, I was pretty relaxed. Now the trick will be to remember to do that routine over the next few weeks. In other words, it was pretty useful since I have had a few little anxiety attacks the past few days.

Well, thanks for tuning in. A friend and colleague observed that this blog probably benefits me as well as all of you who are reading it and I have to admit that I do benefit from it. Not only does it save me time in that I can keep a lot of people updated, but it also helps me to unload some of my feelings as I go through this process. Anyway, I'll try not to get into it too much (I mean, I don't need to report what I had for lunch, now, do I?). I do appreciate you reading it, though! Hope you're all having a good day!
Dee

Friday, November 9, 2007

Some anxiety relief

Hello again,
So, I met with my surgeon, Dr. Faddis, today. First, he said that he didn't think that the surgery would be postponed because of my cough, so that was a bit of a relief to hear. Second, although most of the books state that I may not have any sensation post-surgery, he thought that after a few weeks, some sensation does come back, although he wasn't sure if it would for the reconstructed nipple, but perhaps for the other one. So, that means, ahem, that that might mean I have one headlight out, if you get my drift!! Also, for my friends who are in law enforcement, I will be carrying a note from my doctor stating that I shouldn't wear the shoulder belt in the car after surgery - so don't pull me over and give me a ticket! : ) I can't remember what else we discussed, but I see my plastic surgeon on Monday, so if any inquiring minds out there want to know something, let me know and I will ask it! Have a good week-end, everyone!
Deanna

Thursday, November 8, 2007

Coughing and anxiety

Hello again,
It's been a tougher week than expected. I caught a cold while in Fairbanks - it was mostly just a cough. It started to get better last week, only to get worse again on Sunday, after my party. Because of the cough, I decided to cancel my trip to Washington DC to attend meetings at the National Science Foundation. I asked around and people reported that they might actually delay surgery if I'm not completely healthy. Thankfully, NSF very graciously told me that this was the right decision to make - and I'm very appreciative of their understanding. It's allowed me to rest while taking care of some minor tasks around the house.

The cough is frustrating - I hate having a cold and feeling tired! The last couple of days, I've started to feel some anxiety about the upcoming surgery - my heart starts beating a little faster and my breathing becomes shallower. To counteract it, I'm taking deeper breaths, but it's hard to completely relax because I'm both worried about the surgery and worried that it might not happen if I don't get better. And, my anxiety probably doesn't help me get over the damn cold!

I did participate in a teleconference for some of that NSF meeting and I must admit that I enjoyed it (although my neck and hand got tired of holding the handset to my ear!) and furthermore, it was a nice distraction. I didn't have any anxiety the whole time I was listening in on the meeting or making some comments. So, this makes me think that I need distractions to keep my mind off of things. Part of the reason why I enjoy these meetings is that I do think that NSF takes suggestions that I might make seriously - in contrast to what goes on sometimes at OSU. There are some things here at OSU where it seems like my opinion doesn't matter - mind you, it's not everything because there are situations at OSU where my opinion did help. Anyway, the teleconference was a welcomwe distraction. So, I guess this means I need more distractions!

Tomorrow, I meet with the surgeon, Dr. Faddis, to talk with him about what will happen next week. If there is anything new to report, I'll write another post! Take care. Love, Dee

Sunday, November 4, 2007

Another huge thanks!

First of all, I want to thank everyone who was able to come to my "Boob Ball"! There was a lot of laughter, good food, and good company! I think I may have surprised a lot of people with my balloon activity: I bought pink balloons and asked everyone to blow a balloon up to the size they think I should be after reconstruction! Afterwards, I asked people to put an "f" on the balloon if they were female and an "m" if they were male. The results of my gender study: 3 males and 5 females thought I should be "large" (i.e., DD cup or larger); 5 females and 4 males thought I should be "medium" (i.e., C or D) and 8 females and 3 males thought I should be small (i.e., A or B). So, while I thought I could predict that more males would want me to be larger, there were actually more females: one of my female guests said that she blew her balloon up large because she always wanted to be bigger! So, there you go.

Okay, in terms of the three contests, the winners are: Allison Davis-Whiteeyes won the prize for the best "boob food" - a cake made to look like boobs! Courtney Everson won the prize for the best visual joke - a cartoon. And, Scott Harms won the prize for the best word joke. I will try to learn how to post photos of the cake and the visual joke and the word joke tomorrow. Again, a big thanks to everyone who was here. It was really a great time and I think the memories of the party will sustain me through and after surgery!

And, again, I wanted to thank everyone who read the blog and even if you couldn't be here, your spirits were and for that I thank you, too!

This week will be kinda busy. I have some appointments Mon and Tues and I will give a lecture to the OSU Folk Club on Monday evening. Then, Wed to Fri, I will be in Washington DC attending some meetings at the National Science Foundation. Then, I'll be home a week before surgery on Nov 16, discharge from the hospital may be Nov 18 and I will be home just four days before Thanksgiving.

Thank you, too, for all the jokes! I read a lot of them, but will probably take the time to read the rest in the next couple of days. Thanks again!

Thursday, November 1, 2007

A big thanks to everyone!

Hello again,
I just wanted to let you all know that I appreciate you all taking the time to read the blog! I am grateful for your posts and your wishes, prayers and blessings. I think perhaps that they are making a difference because I have felt less tension in my shoulders and my tension headaches and clenched jaw seem to have gone away. In other words, I am feeling more relaxed and centered. (Or maybe it was that massage I had the other day! LOL) No, seriously, I appreciate all that you're doing for me so far .. . it's helping me feel less anxious about the surgery.

Several of you have contacted me to say you can't make it to the party and I wanted to tell you that I completely understand . . . no problem! And, for those of you who said you can make it, cool! I think it's going to be fun. One person I saw last night said they've already made something for the party . . .

Again, thank you! And, we'll see you soon!

Monday, October 29, 2007

Party Details

Hi everyone,
So, a couple of people have asked if they can bring anything to the "Boob Ball". Again, it's Nov 3 at 6pm. Please bring your own drinks and a boob joke. Also, I will have a few contests, for: 1) the best word joke; 2) the best visual joke; and 3) the best "boob-looking" food. I will have some snacks and munchies. I also plan to have another activity. My son will be there, so keep that in mind in terms of how risque your jokes are . . . I mean, it's okay to bring them, but maybe be cognizant of who's around you if you choose to tell it out loud! : ) Again, I assume most of you know how to reach me in order to get my address and directions. The theme is humor, so please bring a lot of it!
Thanks, Dee

Sunday, October 28, 2007

Beautiful Sunday in Oregon

We just had a beautiful week-end here in Oregon - sunny and in the 60s both yesterday and today. Today was devoted to yardwork and housework - I wanted to finally paint the ceiling in my living and dining room, but I ended up only getting about halfway done because the #@*#&$ popcorn texture ceiling started falling off! I don't think that the person or persons who put that texture on the ceiling put primer on beforehand, so it just scrapes off really easily. So, I put that whole project on hold for awhile.

At any rate, I wanted to tell everyone that I am indeed having my "Boob Ball" on Saturday, Nov. 3, at 6pm. If you write to me via email or call me, I can give you my address or directions. My son will be there, so it will be okay to bring kids, but we'll have to be careful if there are any risque jokes or images . . . I am planning to do an activity involving boobs and there will also be a contest for the best word joke and the best visual joke. So, please remember to bring a boob joke! I am kinda thinking of compiling it into a book of some sort and have it distributed to the breast cancer support group here in town. By the way, here's a joke that a former student named Erin Haynes gave me:

Q. What do model trains and boobs have in common?
A. Both are intended for children, but it's the fathers who end up playing
with them

You all wanted to know how you can help, and so I wanted to make a request of everyone and it has to do with mind/body interactions and what is called visualization. Let me explain. A colleague of mine, Melissa Cheyney, told me last year sometime that right before she had her wisdom tooth (or teeth?) taken out, someone told her to spend some time "talking" to them. She basically told them that she didn't need it (or them), thanked them for being there, and then asked them to let go of her jaw willingly. Afterward they were removed, I think she told me that the dentist said that she hardly had any bleeding and she hardly had any pain. Remembering her story, I decided to begin meditations in which I talk to my breasts and tell them thanks for what they've done for me, but now it'd be better if they were taken away. I've asked them to go willingly and also asked my body to let go of them with little to no pain. I've tried to visualize the surgery in order to prepare both my mind and body for what will happen. I'm also anxious and apprehensive about this surgery as I'm not sure how much pain I will have and also I'm not looking forward to the nausea from the anesthesia after surgery. So, my request of you is to help me with this meditation - whether you pray or send positive thoughts or send good energy, whatever it is you do. And, what I'm telling myself (and what I'm asking you to do) is: 1) ask my body not to get nauseous after surgery; 2) ask my breasts to leave my body willingly and with little pain; 3) to talk to my pectoral (sp?) muscles so that they are not tight and allow the temporary implants to be inserted under them easily; and finally 4) to help me not to be too anxious beforehand. I was very anxious before surgery last time - and I didn't know what to expect - and I think that that may have affected me post-surgery. I've been doing some ready and it just seems that the more positive you are before surgery or chemo or whatever, the better your body reacts .. .

I appreciate it, everyone! And, remember those jokes!

Thursday, October 25, 2007

surgery date

Hi again,
I received several calls yesterday from both the plastic surgeon's and the regular surgeon's office. The surgery date is November 16. I guess I go in at 6:30am, they inject the radioactive stuff in my breast around 8 or 8:30am, surgery is at 10:30am. I think Dr. Faddis (the regular surgeon) estimated surgery to be about 4 hours. They say I'll be in the hospital two nights, which means I go home on November 18. I have my pre-op appointment with Dr. Faddis on the 12th, where he'll go over the whole process with me. Last time, I didn't ask for this pre-op appointment with Dr. Hudson and when I went into the hospital, I was not only anxious because of the impending surgery, but also because I didn't know what to expect or the sequence of events.

The radioactive stuff is to try to map my lymphatic system so that Dr. Faddis can try to get a new sentinel lymph node, if there is one. This will help determine whether or not I go on Herceptin. It's interesting - I've talked to a couple of colleagues here and they say that they've known folks who went out of the state of Alaska for breast cancer treatment - one woman went to Maine (or was it Massachusetts) where her family was and another woman went to St. Louis. They were a bit surprised when I said I could have surgery in my home town, which then brings up the questions about whether or not the surgeons I'm working with are "good enough". I feel pretty comfortable with the two surgeons (Dr. Faddis the surgeon and Dr. Havard the plastic surgeon) and one of my friends, who is a surgical nurse, said that both are good. I'm fortunate, in other words, that I can stay home to have surgery, and not have to go elsewhere. On the other hand, if there is a breast surgeon specialist in town, that means that there must be a demand for it, which might mean that there's something going on in town or the Willamette Valley that causes breast cancer. My colleague Sunil Khanna says that there is a higher incidence of breast cancer in the Willamette Valley than elsewhere in the state and that they are looking into possible reasons why.

Well, we head home today from Fairbanks. It was a good trip, overall. I spent most of yesterday afternoon catching up with folks I know at the Carlson Center (where AFN is held) and then met with colleagues and was fortunate to spend time with my cousins. My cousin Cindy's son, Ethan, watched Eddie for awhile so I could meet with Tom Thornton and Rosita Worl and company. It was fun and apparently Eddie had fun with Ethan. Anyway, I better go . . . we're meeting Teddy and Larry and Matt for breakfast.

Wednesday, October 24, 2007

King Island placenames

Yesterday, I was feeling guilty for not working and part of the reason is that one of our elders, Teddy Mayac, has been working almost non-stop since he arrived here. But, yesterday afternoon, we finally sat down with Larry Kaplan to do some work. First, Larry and Teddy went over bird names (and I visited with colleagues Gordon Pullar and Dixie Dayo at the Dept of Alaska Native and Rural Development for a few minutes). Then, Iviana wanted some tea, so we went to Wood Center and worked for another hour and a half. It's interesting - Teddy had a list that we worked on last December, plus information from lists made by Frank and Ursula Ellanna back in the 1980s, plus a list he worked on with Marie. Larry had all of those lists, plus a recent one from early September. That one had been revised and fortunately, my student Kai Henifin had printed out a newer version from late September. At any rate, we first had to figure out whose list we'd work on and how we could then make sure we were all on the same page (pun intended). I think we finally figured it out. So, we worked with Teddy, Larry, my mom, and Agnes from about 3:30-6:30pm and then we had dinner and about 7:30pm, Teddy and I went over the list yet again as some translations for names got into the Descriptions column and I want to be sure all the translations are there. We worked until 9pm. Teddy and I still have a few more pages to go over. In the meantime, Larry is working on spellings. Hopefully, I will have the most up-to-date list by the time I leave.

Are you confused? We are! It is important work for our placenames map, though. We need to make sure we're all operating with the latest and best list.

No news yet on the surgery date . . .

Tuesday, October 23, 2007

Some thoughts while on a business trip

Hi everyone,
So, as you know from my previous post, I am now in Fairbanks trying to work on a couple of projects. There's the King Island placenames project and also this new project that I'm working on related to Alaska Native corporations created under ANCSA. When I first got the diagnosis, I was thankful that I did have a few things that I needed to work on in order to keep busy, but I've found in the last week that I don't feel like working at all. And if truth be told, by the time we left on Friday, I just really wanted to stay at home and read books and watch movies. Now I feel guilty because I am up here and I gathered a few folks here to do some work on the placenames project, but I find myself trying to avoid the work. Ah, sigh! I guess I'm just wondering what other people might do in a similar situation: while waiting for surgery for cancer, would you want to keep busy with work? Or would you just want to hang out and visit with friends and family? I guess it's different for different people. Maybe what I need a kick in the pants in order to get motivated for work! The good news, I guess, is that I only have a few things yet to do and then I can just relax.

At any rate, no news yet on a surgery date . . . will keep you posted!

Saturday, October 20, 2007

Snowy Saturday in Fairbanks, Alaska

Hello again,
I am writing from snowy Fairbanks, Alaska! We arrived here yesterday evening - it was snowing when we arrived at the airport and when I got our rental vehicle, there was about 6 inches of snow on it! Fortunately, it's a dry snow, so it's easy to clean off the cars. We (my mom, my son and I) are here to go to some events associated with the Alaska Federation of Natives conference which starts on Monday. We will also be meeting with the linguist (Larry Kaplan) and with the archaeologist/mapper who have been working on the King Island placenames project. A couple of elders from our community, namely Teddy Mayac and his wife, will help us, too, as we try to finalize the spellings of placenames and also of birds. Also, on Wednesday, I will meet with colleagues Tom Thornton from PSU and Rosita Worl from Sealaska in order to begin a new project assessing how the Alaska Native Claims Settlement Act has affected biocultural health and also the environment, etc. It should be interesting. We already had native food last night . . . well, the elders did. They ate maktak (whale blubber), dried meet, and alluq (Eskimo ice cream) and I also ate some smoked salmon that Teddy and Agnes caught. It was good!

It occurred to me while traveling up here that I should have titled the last entry "The Waiting is the Hardest Part" (a song by Tom Petty and the Heartbreakers). I thought that it might be kinda cool and fun if I could find song titles that would be appropriate for these posts . . . now I need to work on one for today's . . . hmmm.

Dr. Kenyon called me while we were on a layover in Seattle. He said that my PET scan was okay but that my tumor is Her-2/neu positive. However, this does not necessarily mean that I go on Herceptin - it depends on how big or how much cancer is in the breast tissue - and they won't know that until after the mastectomy. It will also depend on whether or not cancer is in my lymph nodes, so Dr. Faddis will try to get one for testing when I'm in surgery for the mastectomy. So, let's cross our fingers and hope that it's both small enough and not in my lymph nodes! I think doing chemo would be hard, although apparently Herceptin does not cause your hair to fall out nor does it cause nausea. It just might affect my heart muscle! So, back to the waiting game - we won't know more about whether or not I take Herceptin until after surgery. Surgery has not been scheduled yet, but hopefully, I know next week.

Well, I'm doing okay . . . we're staying with my cousin, Clara, while in Fairbanks. My son, Eddie, is ready to use the computer and he is "patiently" (ahem) waiting! Take care!
Dee

Thursday, October 18, 2007

Ahh, the waiting . . .

Hi everyone,
I thought that I would wait until I heard about the results of my PET scan and Her-2/neu analysis before creating a new post. I was told that Dr. Kenyon would probably get the results of my PET scan on Monday or by the latest on Tuesday, but I haven't heard yet. Then I figure that he's wanted to wait to get the Her-2 results before calling me. Anyway, waiting to hear about results does cause some anxiety, even though I try to be patient. This is probably one of the worst parts of living with cancer: the anxiety of not knowing and waiting to hear results. Today, I told my friend and colleague, Janet Lee, that NOT hearing the results yet might mean that it was good news - if it was bad (i.e., the PET scan showed something abnormal), Kenyon would've called me right away. That's what I hope, although I try not to make that assumption. If the Her-2/neu is positive (i.e., "overly expressed"), this might mean that I go on Herceptin for a year. I'll let you all know what happens . . .

I met with Dr. Faddis, the surgeon, yesterday, and with Dr. Havard, the plastic surgeon a few days ago. Their offices will coordinate to schedule the surgery, which I asked to be after November 9. At this point, it's a bilateral mastectomy with insertion of temporary implants, otherwise known as tissue expanders. After healing from the surgery, I will spend about two months getting "pumped up", that is, Havard will inject either 20 or 50 cc's of saline into the expanders in order to gradually stretch the chest wall muscles and the skin.

Dr. Havard and a couple of women that I talked to who went with reconstruction using implants used the term "pump it up". So, I decided to go into iTunes to find songs entitled "Pump it Up". There were almost 100 songs! There were several versions that were remakes by the same artists, which still makes a lot of songs with that title. Actually, though, the song I was thinking of is "Pump up the Jam" by Technotronic. If I can figure out a way to post that tune on this blog, I plan to do it, so that you all can think of me as I undergo "tissue expansion"!!! So, don't be surprised if you see me changing size over the holidays!

Wednesday, October 17, 2007

A joke

Hi again,
So, shortly after I found out about the second cancer, a young woman (Beth Marino) with whom I'm coauthoring a paper on King Island sent the following joke that I thought I'd pass on:

What did one saggy boob say to the other saggy boob?
If we don't get support soon, people will think we're nuts!

Believe me, I won't get offended at most jokes. So send them or post them!
Thanks everyone,
Dee

Monday, October 15, 2007

A New Blog

Hi everyone!
So, blogging is new to me, but since I will need a quick and easy way to keep everyone "abreast" (thank you David McMurray!) of what's going on with me as I undergo my second round of treatments for breast cancer, I decided to create one at the suggestion of one of my friends, Andrew Valls.

Okay, for those of you who don't know, I was diagnosed on October 3, 2007, with a second and different cancer in the right breast. Five years ago, from August 2002 to March 2003, I underwent treatments for a 2.0 cm infiltrating lobular carcinoma. The treatments included a lumpectomy with sentinel node dissection, four treatments of adriamycin and cytoxan, and 6 1/2 weeks of radiation. Since the tumor was estrogen-positive, I started taking tamoxifen in April 2003 and just finished taking it on October 10.

This time around, I have a very small (2-3mm) infiltrating ductal carcinoma. I have decided to go with bilateral mastectomy (which decreases my overal risk of recurrence from 20% to 1-2%) followed by reconstruction. So far, I know that it is estrogen positive as well and since I'm premenopausal and tamoxifen (which tends to work with premenopausal women) did not work, I may have to either surgically or chemically induce menopause by taking out my ovaries or stopping them from working with monthly injections. But that's a decision to make later.

For reconstruction, I will go with implants, although I won't need to decide on saline or silione just yet. Even if I wanted to do a TRAM flap (i.e., use my own tummy tissue and muscle), I only have enough tummy tissue for one breast! So, I'd need an implant anyway. Implants have a shorter surgery time and a shorter recovery time. And, apparently, they will be able to use the nipple from the non-cancerous breast to help reconstruct the nipple on the right side. Ah, the things you don't know.

Two women at the support group last night were kind and generous enough to show me what mastectomy and reconstruction look like -thank you ladies! It's helping to demystify the whole process and what to expect.

We're waiting to see whether or not I need to do chemo. So far, the chest x-ray is normal and I am now waiting for the results of the PET scan.

Overall, I'm doing okay and am planning to have a "Boob Ball" on November 3, in order to say good-bye to the troublesome cancer appendages and also to celebrate life and laughter. My only requirement for guests is that they need to bring a boob joke, which I will put into a notebook that I can enjoy after surgery. Of course, there are times when I feel sad or lonely or tired or stressed out, but my friends and family and colleagues have been great - I just need to make a phone call and I feel a lot better! Scott (my boyfriend) and my family, especially, have been great. When Scott is able, he's here with me and has attended a couple of consultations with doctors. He's also helping me as I work through feelings and consider treatment options. Humor helps tremendously!

So, anyway, save the date! For those of you in town, the "Boob Ball" is November 3, probably around 6 or 7pm. And, remember your boob jokes!! : )
Dee (or Deanna or Dede)