Sunday, August 26, 2007
It's been a memorable few weeks since I last wrote. I have been really afraid of meeting with my doctors and hearing what happens next. I have had good days and bad days, masked by Percocet and worry. My mood fluctuates and the dark moments are frightening.
I finally weaned myself off the Percocet, but not before embarking on a new course of reconstruction. Fortunately for me, Advil (ibuprofen) works better than Percocet at managing the pain. You can't even imagine the extreme uncomfortableness of these procedures. Dr. Tsao Wu takes a giant syringe (60 cc of sterile saline) and slowly injects it into my expander implant, asking me "How does that feel?" about every 23 seconds. It took me a while to realize I wasn't breathing, which made it difficult to answer the question. Oh, and it gets better! When she's done on the right, she fills up the syringe and does it to the other side. AAAACK!
I look like an absolute freak, with these hard things under my skin. I wouldn't call them breasts. I will never have breasts again. I have rock-hard bumps where my breasts used to be. Eventually, after I complete radiation, the expanders will be removed and I'll get more natural-looking implants. (I hope I don't become one of those women who shows off her boob job to her friends like a fashion accessory.) These do not feel like a part of me and I am not attached to them. They're just there so I look more normal in clothes.
During every procedure, my friend Colleen has been there, literally holding my hand and watching the doctor. Visualize this: I am holding my breath, eyes tightly closed, and trying to focus -- or maybe not focus -- on what's happening to me. This isn't like any of the cancer treatments I've been through. It's just extreme discomfort for the sake of vanity, so I don't wake up some day and realize my breasts are gone, and then fall into a deep, dark depression from which I never emerge.
I just don't think that's gonna happen, implants or no implants. I know lots of women who lack breasts, and they're not unhappy. To put a positive spin on it: we are all happy that our cancer is under control. We are satisfied with life!
Admittedly, we have scars, both emotional and physical. Lots of people have scars, have experienced life's ups and downs, have weathered a few storms, and have great stories to tell. I have heard so many of these stories, and I'm here to tell you there are people out there who are a lot tougher than I am. What I'm going through is trivial.
Studies have shown that the patients who fare the best during these kinds of trials and struggles are those with a strong support structure. Knowing that people care makes all the difference to me. My friends have been so helpful and supportive. My INMM colleagues send their best wishes in the form of a weekly cleaning service (isn't that nice?). The soccer team parents bring over yummy food and provide rides for Rachel. Friends have persuaded their prayer groups to pray for me, and I've received dozens of cards in the mail, verses, inspirational books, and a prayer cloth from my sister-in-law Karla. The folks from work call and send emails to brighten my day. My bunco girlfriends (pictured above) provide food, laughter, and rides to the doctor. My Kappa sisters call, write, and arrange fun get-togethers (those are the Kappas below). And my family has been so good to me.
The most incredible thing happened this weekend. I had a knock on my door on Saturday morning, and my boss, Al, was waiting there. Earlier in the week, he and I made arrangements for a landscaping contractor to do a few jobs around my house. "What are you doing here?" I asked. He said the crew would be showing up momentarily, and soon after a dump truck came with a load of landscaping rock. Then, the crew started to arrive. Surprise! Fifteen people from work showed up with wheelbarrows, trucks, chain saws and shovels to landscape my yard. Fifteen people! On their day off! They worked for six hours to give me the most amazing gift. I couldn't believe my eyes. I am so humbled, so overwhelmed. MY FRIENDS ARE SO KIND AND GENEROUS!
I have been worried about my radiation treatments and what the pathology report meant in terms of my overall prognosis. I met with my radiation oncologist, Dr. Goss. You may remember I had an unsettling meeting with him before surgery, and I was freaking out about the upcoming radiation and some of the comments that he made. My medical oncologist said she would find another doc for me if I wanted someone else. I refused, saying I thought I wasn't in the right frame of mind to really hear what he had to say last time. Now that the pathology report was out, I was ready to listen to him.
I was happy with our visit this time. Colleen went with me and took copious notes. (Colleen preps me before each doctor visit; we go over every question that I need to ask). He said he had talked to the pathologist, my medical oncologist (Marshall), my surgeon (Smith), and my plastic surgeon (Tsao Wu). Yes, all of them. He talked about my treatment (radiation only on the left side to blast all the remaining lymph nodes and muscle tissue) and was confident that I was going down the right path. He explained the benefits of radiation and the downside too. He said I'm doing the right thing for my reconstruction; he was concerned earlier, but he spoke with my plastic surgeon and she straightened him out. He explained the results of the path report in a way that helped me understand what the pathologist saw. He described the additional surgery that Dr. Smith wants to do, and said it was a "no brainer" to do this after radiation when Dr. Tsao Wu replaces my expanders with real implants rather than to have a separate surgery. He talked about the likelihood of finding any additional cancer cells (low) even though it's prudent to go back in to get a clean margin. And finally, he explained (with a little bit of hedging) about my prognosis. He said the most important indicator was that I had responded to the chemotherapy. The chemo trumps everything (assuming you remove the tumors surgically). He said my response to chemo was "excellent", which gave me a much better prognosis. Using modern radiation methods will improve my chances of survival by 7 percent, which is significant, but not as important as chemo.
Did I mention that Colleen holds my hand during treatments? The power of human touch is amazing. But I suspect she's really restraining me, and not trying to make me feel better. Otherwise I would run out of the room. FYI, a picture of Colleen appears on this post somewhere. See if you can find her. Ha!
My next step is to get a compression sleeve for my left arm. This will help prevent lymphedema from developing when I fly on an airplane. I'm going to Tucson next month for a soccer tournament, and I sure hope this sleeve works. My fellow cancer survivor friends tell me I'll never fly without one again. Oh, the joy.
Starting in mid-September, I'll have radiation for six and a half weeks, then another operation to remove the expanders, remove the additional layer of pectoral muscle to get a clean deep margin, and put in the permanent implants. The reconstruction should be finished by the end of the year, and the new, improved version of Grace will be back at work in 2008.
And then I can breathe again. Whew.
Sunday, August 12, 2007
When I last wrote, I was waiting for my appointment with my surgeon, Dr. Smith. My friend Debi took me to see her. (Thank you, Debi). Boy, was I nervous. She sat down and told me the news. My pathology report showed no cancer on the right breast, and 0 of 2 sentinel lymph nodes excised were positive for metastasis (cancer). So far, so good. On the left, 3 of 11 lymph nodes excised were positive for metastasis. One tumor was found, and it was positive for invasive ductal adenocarcinoma. Ready for the really bad part? As if that wasn't bad enough. The tumor was stuck to the chest wall, and the margin was "focally positive". In other words, the margins were not clean. The tumor was within 1 mm of the the deep margin (the muscle) on the left side in two separate specimens. Dr. Smith explained that she and the pathologist in the operating room felt that they had gotten clean margins during surgery, but this is what the lab found. In her opinion, she wanted to go back in and scrape a little more of the muscle to get more of the cancer cells, in hopes of getting a clean margin. She told me that if her sister were in my shoes, she would advise her to to the same.
She asked me to consult with my plastic surgeon to determine the best time to do this surgery, to work it in with my reconstruction, but that the operation had to be done before radiation started. In the next few weeks, she said. I asked a few questions, but I was in shock.
Denial. Anger. Bargaining. Depression. Acceptance. I felt myself going through all these stages that night. Debi stayed with me that evening while I had a small reception for my son, who was home for a few days. He left the next morning for Texas before I had a chance to tell him what was going on. Later that week he called me, angry and frustrated. "Mom, why didn't you tell me? I could have stayed home with you. You told everyone else, but you didn't tell me. I had to hear it from Meggie!" I explained that I was not sure there was anything he could do, and he might as well have some fun on his little break. I needed more information!
I definitely needed more information. I left Dr. Smith's office without a copy of the pathology report. I didn't ask her about my classification or staging. I forgot to ask a lot of questions.
By Friday I had an appointment with Dr. Tsao-Wu, my plastic surgeon, who was planning on draining a seroma that had developed on my right side. Colleen was the lucky gal who went with me. As Dr. Tsao-Wu worked on the seroma, Colleen and I bombarded her with questions. She said she wasn't sure how this additional surgery could fit in with the reconstruction; she would have to think about the best way to do that. Dr. Smith hadn't contacted her, so she would give her a call. I saw her again on Monday, again with Colleen, and she still hadn't heard from Dr. Smith but had left her several messages.
Later that day, Barb J. took me to see my oncologist, Dr. Marshall, who had the pathology report in hand when she came into the exam room wearing the cutest little gold dingleball earrings. She explained in detail what the path report said, and why maybe it wasn't necessary or advised to have more surgery. As she spoke, the gold dingleball earrings swung back and forth, mesmerizing us. She said I needed to discuss this with the radiation oncologist and with Dr. Tsao-Wu again. I would definitely need radiation on the left side, and that's the purpose of the radiation -- to zap any local cancer cells that may have been left behind. (good news -- I probably won't need any radiation on the right side).
After my appointment, I called Dr. Tsao-Wu's office to ask her a question, and she got right on the line. "I spoke with Dr. Smith," she said. I strained to listen. "I told her I wasn't planning on opening you up again until after radiation." She explained that Dr. Smith said it was pretty rare to have to go back in to remove more muscle, and the surgical community didn't have enough case studies to determine the best time to do it, so it would probably be okay if she waited until after radiation. ??!?! What?
Now, this doesn't make any sense to me. If the radiation gets it all, why do we have to go back in again? And what was the reason for the initial urgency?
[NOTE: It has been brought to my attention that this post is completely depressing and unfunny. Therefore I will relate a funny story I heard, which provided me with the one belly laugh per day that I so desperately need for healing. My friend Joe called from El Paso, and I told him that my hospital bill arrived (wow, almost faster than the pathology report). The total came to $30,000. Joe reminded me that on the Sopranos, they refer to that as 30 boxes of ziti. Ha! OK, resume reading post now]
When I got home, I started reading my favorite breast cancer book, Dr. Susan Love's Breast Book, to find some answers. Dr. Marshall had given me a copy of the pathology report, so I began to "stage" my own cancer. Here it is, folks. Stage IIIB. It's a locally advanced cancer (what Dr. Love calls a "special case"). It's also pretty rare to have tumors in both breasts, which is what I had before chemo did its job. However, the staging depends on the worst tumor you have, plus affected lymph nodes, which gives me Stage IIIB.
For all you analytic types who want to know where it lies on the Nottingham scale, it is Tumor Grade-1, Nuclear grade-2, Mitosis score-1, tubule formation-1. The Tumor Grade helps determine my prognosis. More on that later.
All along the protocol for my cancer treatment was in the Breast Book. I had never found that section because I didn't know exactly what we were dealing with. Here it is: neoadjuvant chemotherapy using Adriamycin & Cytoxin, followed by Taxol (A/C+T), four treatments each. Frequent examinations and diagnostic tests to be sure the tumors are responding to the chemotherapy. Bilateral modified radical mastectomy, followed by radiation on the side where positive lymph nodes are found. I did all of this, and I'm now awaiting radiation.
Some cancer patients have asked me why I am undergoing these particular kinds of treatments. They seem to feel in some way that I got better treatment, or they weren't offered the latest and greatest. Now I know the answer. I was placed on this particular protocol because I am a "special case", a locally advanced cancer. Boy, do I feel special.
I was never told that I was a special case, that my odds of survival are not good. Grade 1 tumors often show an 80 percent survival rate after ten years (80 percent of the women with Grade 1 tumors survive). Here's what Dr. Love's book says on the subject: a study of a group of women with Stage IIIB cancers, treated aggressively, show a median overall survival rate of 12.2 years and event-free survival of 9 years. That means half the women in this study have had no recurrences in 9 years and half are still alive at 12.2 years. Fifteen-year overall survival rate was 23 percent (at 15 years 23 percent were still alive). Let's see, that would make me 63 years old. Rachel would be about 28. I probably wouldn't be a grandmother yet.
Makes you think, doesn't it?
What would you do if you only had 15 years to live? Would you be doing the same things you are doing today? What will you do today that will matter tomorrow?
As for me, I think I will take a few trips to see parts of the world I haven't seen and maybe revisit some that I really love, like Hawaii, Alaska, and Italy. I want to visit some friends and write about my experiences. It will probably cost me a couple of boxes of ziti, but it will be worth it. I'll bring my camera and sketchbook, and you can enjoy it with me. Ciao, baby!
Sunday, August 5, 2007
Hi All, It's me again. I hate to complain, really I do. But the pain! Ouch! Surgery is not for wimps. Ouch! Don't ask my why I'm smiling in this picture with Catherine. Ouch!
Just kidding. It's not too bad. And a ride in a red mustang convertible is enough to put a smile on anyone's face!
I had the surgery as planned on July 30. The surgeons tell me it went well. I lost more blood than they expected and had to have a transfusion, but I survived the four and a half hour surgery. The anesthesiologist did his job well, and I didn't get sick. It was the best anesthesia work ever (is that possible?). Dr. Tsao-Wu put some freaky expander thingys in me, and Dr. Smith gave me an On-Q pain ball to deliver lidocaine to my surgical site. It's the coolest thing ever invented. Dr. Smith took out all my axillary lymph nodes on the left, and just a handful on the right. Preliminary results of the right lymph nodes showed the cancer had not spread there. Those giant circus boobs are gone, and the cancer with them. I hope.
I will find out on Tuesday. Yes, I'm anxious. I will find out if the margins were clear, and what the tumors looked like. Unfortunately, because I had chemo prior to surgery, it will be hard to actually locate all the tumors in the tissue. I think Dr. Smith will stage my cancer. I'm pretty sure it's just Stage II. I am not really sure because I had 5 tumors, and one of these was in a lymph node. The TNM classification is really just for one tumor. The staging helps determine my treatment and prognosis. My earlier pathology reports indicated that the neoadjuvant chemo and bilateral mastectomies were the right approach. These new path reports will determine if I need radiation treatment. I assume I will hear something about my prognosis (depending on whether I do the radiation or some other treatments). Five years? Five months? Blah blah blah.
Rex and I are pretty tired of all this cancer talk. He and I have been bonding over the past few weeks. A while back I decided he needed to have a doggie date, so I took him down by the river for some fun with a little friend, Chaco. We had a ball! Unfortunately, he got some weeds in his fur and it went from bad to worse. $750 later he is wearing a stupid cone (elizabethan collar) and is taking lots of antibiotics to cure the hot spots on his neck. Poor Rex! That's what I get for trying to be a cool dog mom. I should stick with what I know best, which is, um . . . . . I'm pretty sure all I'm good at is lying on the sofa and moaning. Oh yeah, and waiting for the doorbell to ring, and hoping it's a friend to come visit me.
Number of books finished: 1
DVDs watched: 5
Hours spent on sofa: 60
Age of last home health care nurse: about 95. I am serious.
Phone calls received: at least a hundred.
Visits: about 15 (Yay! I love them! Please call first, though)
Bon bons eaten: 6 (but who's counting)
Pounds gained : None, so far. You would think I'd lose weight during surgery! Duh! But hey, people, you try losing weight when people bring you food all day long and all of it tastes wonderful!
Runs to Flying Star for eclairs: 2
Calories in 1 Flying Star eclair: 2000, more or less
I read a study today that said people with strong social connections tend to experience less stress and depression than those who are more isolated. Just sharing your feelings can be helpful. One recent study used MRI brain scans and demonstrated that putting feelings into words does help reduce distress. And laughter, of course, is the best medicine.
(in case you were wondering, that's why I blog)
I am so grateful, really I am, that I have the support of great friends like you all. Every conversation we have is meaningful, important, uplifting, and encouraging. I will never take our friendship for granted, and I hope you don't either.
You people are amazing. Everyone last one of you.
I give special thanks to my friend Catherine, who drove me around town in her red convertible Mustang, blasted out Bon Jovi music, and gave me a dose of Vitamin D and fresh air that I badly needed. Thanks!
Thanks to Catherine and Rachel and Callie for taking Rex to the vet to finally get him fixed up. I apologize to all you people who saw him at his worst, stinkiest state, and acted like it was no big deal. He was vile! But he's all better now, and he loves everybody and he loves breakfast most of all (he wanted you to know that).
Thanks to all of you wonderful people who are determined to stuff me full of fabulous food. My mom, Rachel, and I are so grateful.
Thanks for all the fabulous flowers, too! You know how much I love them.
Wait! What's that noise? Oh, it's my thighs rubbing together! Must be the chocolate! Or it could be that giant box of southwest goodies. Who knew that carmel coated popcorn was a high-fiber snack!
Kurt's coming home in a few days. I can't wait to see that little stinker. He's been at field training all summer. I miss him. He makes me laugh! I hope I don't pop a stitch.
What I know for sure: Never underestimate the power of eclairs, err, I mean friendship.