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!
Thursday, November 29, 2007
Wednesday, November 28, 2007
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!
Thursday, November 22, 2007
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!
Tuesday, November 20, 2007
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!
Thursday, November 15, 2007
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!
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!
Monday, November 12, 2007
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!
Friday, November 9, 2007
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!
Thursday, November 8, 2007
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
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
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!