I saw my oncologist this morning, and here's what you and I have been waiting to hear: she gives me a 75% chance of NO recurrence. Here's why:
I have been hit with both barrels of the shotgun with inflammatory breast cancer (everything I read says "rare, aggressive, deadly") that is also triple negative. Each of these is considered pretty lethal on its own. The pathology report showed that the sheet-like tumor in my breast tissue had left cancer cells throughout the tissue—BUT the margins of the tissue were clear by 1 cm. all around. It was contained within the tissue that was extracted. The report showed "significant" size tumors in two of my lymph nodes—BUT they had not pierced the outer walls of the nodes and were thus contained. The best news and a surprise to all was the excellent response to chemo. Triple negative normally does not respond well at all. So "contained" and "responsive" lowered the odds of recurrence considerably.
Radiation should begin in early March, if I can get my right arm to stretch properly. I started a strenuous regimen of physical therapy today. With only two weeks until the start of radiation, my physical therapist said it's a good thing I got a refill on my pain meds. Ow.
To be honest, I wasn't expecting quite this good a prognosis. I knew what good things I had going for me—catching it early, good response to chemo—but until they saw the tissue, no one would know just how good those things were. It was either sheer and incredible dumb luck or God's grace that led me to catch this stuff so early. Five weeks! Five weeks and look how far it had spread. If I had gone to my mammogram when I was supposed to we would have missed it altogether, since IBC is invisible to mammography; and it might not even have been present then. When the pink skin didn't improve after a few weeks, I decided to go and asked for "diagnostic" instead of "screening." I had no idea what IBC was or that I had classic symptoms. Thus began the whirlwind that hasn't stopped yet.
My hair is coming back in! After a couple of false starts, it appears to mean it this time. At one quarter inch it looks really dark, and I still have one spot of short bunny fur, but I’m going to let it all grow and see what happens.
I am so grateful to hear this good news. Damocles' sword still hangs overhead, but the thread holding it just became a strong cord.
February 20, 2012
February 7, 2012
I'm home, after about 30 hours in the hospital. The surgeon was very pleased at the outcome, and I'm feeling pretty good. I still use the pain meds and I'm moving slowly, but I am moving.
My friend is keeping me well cared for and laughing, and that's the best medicine there is. Now I'm supposed to rest for two weeks. Any tips on how that's done?
February 5, 2012
I’ve had a good month since my last post. Many people continue to express their loving support, and it is comforting to know so many are thinking of me. Work has gone well, and I’m thrilled to report that most of my brainpower has returned. My memory is still poor, but it was not so great before all this anyway.
I had my annual visit to Florida in late January. It’s always good to go home to Sarasota every year, but this trip was especially restorative. While Abe has been just wonderful to me and for me, seeing my family and good friends in a relaxing time was just what I needed.
My sister took me to see Drag Queen Bingo, a weekly show at the local dinner theatre. My cheeks hurt from smiling that night. It was an absolute blast. And get this: I won a bingo game! My prize: hair care products. The hostess—Beneva Fruitville, named for two main streets in Sarasota—was hilarious and kind in her remarks about my obvious condition. I even ended up getting a standing ovation. What a hoot.
The following week I spent a couple of nights in Ft. Lauderdale. My friend Tony twisted some arms to get his actor friends together just for me, to rehearse a reading of his new play, "A Letter From the Bishop." It is a powerful play about marriage equality from the view of gay priests, and I was thrilled to be witness to its inception. I was able to meet for the first time an online friend Tony and I had in common. David, Tony and I had a great time together, and it was all too brief.
On my way home I stopped in Ft. Myers to see my old friend Jack, who always offers supportive wisdom and the occasional swift kick. Interestingly, Jack and Tony independently pushed me to consider that the time has come for me to write a book. Talking with them about this pushed me past the subject of my cancer for the first time in a long time.
The past six months has robbed me of my effectiveness in my advocacy for people who are LGBT. I’ve had to suspend meetings of a supportive group at my church, and I had to cancel the presentation I was to make at a national convention of church educators. It has been truly disheartening to let these go, at least for now. But I don’t have to wait to start thinking about writing a book about Christian acceptance and support for LGBT people. I can work on that in my free time, some of which is coming up after surgery.
Having a renewed sense of purpose has really lifted my spirit. I continue to hear from people whose lives have been changed for the better because of what I’ve written. I am amazed and humbled whenever I hear that, and it reminds me each time how important it is to share the truth of God’s love as I see it. I know I’m not alone, but not many are speaking out. I have the privilege of being heard, so I must continue to speak. And maybe it is time for that book.
Just before I left for vacation, I could see that my hair was starting to come in, just as my eyebrows and lashes had fallen out. My new hair felt like bunny fur, but there was an occasional black wire poking up too. Well, they did say it would be different. This week it became clear that my hair was not coming in at the same rate: the back was getting long—in a relative way—and I had a hair line that was beginning to show, but it was not coming in by my forehead. I had male pattern baldness! No way I was keeping that look, so yesterday I shaved it all off again. (Note: bunny fur is especially difficult to shave.) Back to Bald Birdie until it’s all coming in. I really don’t care all that much any more.
My surgery is tomorrow (Monday) at 1:30 PM. I have no worries about that part; it’s a pretty standard procedure. I know I will struggle with my appearance afterward, but it is something I must face and move through. The day will come when it is no longer an issue.
My dear friend since forever is coming from Florida to baby me and reassure Abe. I’m not sure which job will be harder. Her presence here will be so comforting to us both, as are your continued good wishes and prayers. Thank you all for your encouragement, and keep the laughter coming!