Pathology And Prognosis

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.

Surgery Update

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?

Beach, Bingo, Bishop, Book, and Bald

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!

A Fond Farewell

I had a visit with my oncologist today. Due to mild neuropathy but otherwise good results from chemo, this week’s treatment will be my last. Any further treatment besides radiation will be determined by the pathology report from February’s surgery. I will see her again about three weeks afterward. If there is the need, we will discuss current clinical trials for IBC at that time. She remains optimistic.

I will be glad to say goodbye to mood swings and, eventually, the corpulence from the steroids. The neuropathy—numbness on the soles of my feet—will fade away in upcoming months. It will be great to close the door on all the side effects of chemotherapy.

Meanwhile, surgery becomes more real to me as it approaches. Perhaps not every woman feels this way, but I am mourning the upcoming loss of my breast. Some breast cancer patients are so eager to remove the life-threatening tissue that nothing else matters. I am eager too, certainly, but there is an emotional cost to me I didn’t fully anticipate. Of course, who really thinks about it unless faced with the inevitability?

I’ve seen the pictures and they are jarring. Is it possible to be ready? I don’t know. You see, for all my ups and downs with weight and aging and childbirth and surgeries, the one thing I’ve always liked about my body is my breasts. Quite frankly, when I was young my “girls” were pretty spectacular. And they’re not so bad now either. Forgive me, but they are my vanity. That will change.

I fully understand that this is small potatoes compared to the big picture of survival and quality of life. Allow me this brief moment to grieve. I have a few more weeks of feeling whole and then it will be time to get over it and move on.

Girls, it’s been great. Wish you both could come along for the rest of the ride, but that’s life. Literally.

Posted in part to CaringBridge.org

Holiday Update

It’s Christmas morning, and the house is quiet. This is the beginning of the downslide to the church’s “quiet season” of winter, having worked basically full time hours for the past several weeks.

We opened presents last night because I will be working this morning at the one service our church is offering. Then we’ll pedal off to St. Louis for three days of fun and chaos with my brother’s family. My two sisters from Florida and Alaska will also be there. This makes the first time all four siblings and eight cousins have been together in one place. It’s going to be great.

Everyone will be seeing me without hair for the first time. I’m also round as a beach ball from the steroids. Not my finest moment for family pictures, but it will pass. It will be so great to see everyone!

I’m sorry for my prolonged silence. I’ve been especially moody, and they tell me I can blame the weekly steroid infusions. Some people get really mean; I get weepy. But only three more chemo appointments!

I will be going down to Florida for a couple of weeks in January. This is an annual trip, but this one has special meaning: it will be my last hurrah before surgery. Upon my return, I will have a single modified radical mastectomy on my right side in early February. My best friend since forever is coming up from Florida to baby me for a week. It’s only a two-week recovery since no muscle is involved.

I had originally wanted both breasts removed. But the odds of cancer occurring in the other breast is less than one percent for this kind of cancer; it most often recurs in scar tissue or in a distant site. And the fact that I had lymph nodes removed on the left side years ago from melanoma makes extensive reconstruction surgery very risky. So I will wear a prosthesis until I can have reconstruction on the right side and simple surgery to “match” on the left side.

After about six weeks of recovery from surgery I will begin radiation treatments. It will be daily (Monday through Friday) for about eight weeks. Then the waiting begins for reconstruction. That will be determined by what they find in the tissue from surgery; it could be as early as six months or as long as three years, waiting to see if the cancer recurs. I may be retired by the time I get the look I had when I was younger. But hey, if I’m going through this, I’m going to have something to look forward to.

When I went to my plastic surgeon for consultation about my options, he commented that I had to have caught this cancer early. He apparently expected to see me disfigured. Early?! It was stage 3C! I was aware of pink skin for five weeks by the time I had the mammogram and biopsy. Damn, this stuff moves fast. Many doctors treat the symptoms as an infection (as I had originally thought) for months before thinking about a mammogram. No wonder it’s so deadly. And all the literature tells you to look for lumps, when IBC grows in smooth firm sheets in the skin. I was just plain lucky to have caught this when I did. I know IBC is very rare, but still we should be informed.

Well, this wasn’t much of a Christmas post, but honestly, Christmas hasn’t been much on my mind in spite of the hours I’ve put in at church. Helping others make Christmas memories has been fulfilling, but it seems like I missed it this year. That’s just the way it is; I knew it would be different and I had no expectations. I’ve just lived day to day, but I’ve had a lot of happy moments, too. And in spite of the general tone of this post, I do continue to have hope.

It will be merry at my brother’s house this evening. I can’t wait! I hope today brings laughter, joy and hope to all of you, whether you celebrate Christmas, Hanukkah, Solstice, or sales.

Living With Uncertainty

We all live with uncertainty. We wake up each morning not knowing for sure what the day will bring; and yet we act as though it will go as planned. Most often, it does.

Every one of us hungers for certainty. It allays the fear of the unknown. We can quiet our thoughts when we know what lies ahead. That knowledge doesn’t have to be true for it to be an effective balm. How often have we been hit with the truth that belies the certainty we held for so long? And it sends us reeling until we can find our way once again.

That is what it’s like to live with cancer: no guarantees, not knowing what the future brings. I know what I hope for, and I vacillate between the highs of hope and depths of fear.

Will God answer my prayers and the prayers of so many dear friends? Yes. But will it be the answer we want to hear? We’ll see. I’ve been thinking about God’s will for me. If His plans for me include an early death, don’t expect me to like it. I have things left to do, not least of which is to watch my children grow into their adult lives and be by my husband’s side well into old age.

While living with uncertainty is sometimes frightening, most often it is enlightening. I have come to accept ambiguity as a path to knowledge. Not knowing keeps me open to new information and growth. This is especially true in my faith journey. The mystery of God unfolds continuously and my faith continues to change and mature.

In between hope and fear is the middle ground of acceptance. It brings peace because it limits expectations, the source of so much disappointment and pain.

I await that sense of acceptance about my future. I’m probably on some well-defined stage of emotional progress as I deal with my diagnosis. It is important to be allowed whatever feelings are part of my journey, even if they cause discomfort. I’m okay with all these feelings as I process them. I’m okay with being angry, sad, hopeful, enormously grateful, and uncertain—often all at once.

It’s all part of life, and I cherish every minute of it.

Cross-posted to CaringBridge.org.

Damocles' Sword

I have started the new round of weekly chemo infusions, this time with only one drug, Taxol. It’s much easier to handle than the other drugs: so far the worst side effect is double vision from dry eyes, easily fixed with eye drops. I still get sleepy, but not until 6:00 or so. I’ve been introduced by a common friend to someone with a similar diagnosis and the same treatment, and she’s having a much harder time with side effects than I am. We chat by email after each treatment. She has been decked with repeated fevers and antibiotics. She had to skip her last chemo due to low blood numbers, caused by the effect of the chemo drugs. I’ve been borderline but never so bad I had to postpone treatment.

I still suffer from brain fog but not as bad as before. My thought processes have picked up speed, but I still totally space obvious things. This is not good at work, as it burdens my colleagues to pick up the slack. I’m beginning to feel like a lead weight, so I’m programming my iPhone to remind me of tasks. It’s a lifesaver. I even lost my iPhone for a few hours. I searched and searched that house, and I had to go to work without it. I found it when I got home and immediately downloaded the Find My iPhone app.

My sister came up from Florida to visit for three days. It was so great to see her. I couldn’t join her and Sheba for a walking tour of downtown, but I did join them for the State Museum—where I saw clothes I wore in college in an exhibit about 70’s culture. Talk about culture shock.

Whenever you go to a new city, you need to visit places you can’t elsewhere, so I made sure my sister went to the Slippery Noodle Inn, a blues bar that is 150 years old—the oldest bar in the state. Later we went to Bub’s for their famous hamburger. It was featured on Man Vs. Food on some cable channel. We did NOT get the Big Ugly Burger (22 oz.)—we ate the MiniBub. Yum.

At one point I sat my sister down to talk about my diagnosis and prognosis. Triple negative breast cancer has a 70% survival rate of five years, compared to 93% of other types that are positive for at least one receptor (and therefore treatable with targeted drugs). That’s still not so bad, and I’ve beat cancer before.

When I was first diagnosed, the doctor sat down with me and Abe and carefully explained what they had learned. She wrote down notes as she talked, drawing pictures where necessary to explain growth, etc. At the end of the meeting she handed me the notes.

I went online to research the profile from the doctor’s notes: stage 3c, grade 2, triple negative. I was overwhelmed with the speed of diagnosis and treatment, and I didn’t do any more research after that. It was enough for now. But after my sister left, I finally opened a book that had been recommended by several people: Dr. Susan Love’s Breast Book. It offers as much current information about the disease and its treatment as you’re willing to read, and I felt ready to explore the intricacies of surgery.

There was a word that popped up a few times in my reading that triggered my memory, and I pulled out the doctor’s notes again. Yeah, there it was: “inflammatory.” I flipped through the book to read more about that. What I read there sent me online.

Inflammatory breast cancer (IBC) is the most aggressive type there is. It’s why I was rushed through to treatment so fast. And the five-year survival rate is 40%. The median life-span after diagnosis is three years. Only 28% make it to fifteen years. I understand that statistics are not a prognosis. While I will plan to be in that 28%, I live with the awareness that I most likely am on limited time.

This certainly strips away the trivial. Perhaps it’s just the newness of this information, but I wonder if the day will come when I do not feel Damocles’ sword hanging over my head. Every event is filtered through my new awareness, and so much does not matter.

I need to repair my relationship with my son, who is still angry over perceived shortcomings in his parents. I want my family to know they are loved. All else falls away.

I continue my advocacy for gay rights, knowing someone else is going to have to finish that battle for me. It pains me that the very time I reached my greatest effectiveness—starting a gay-straight alliance in my church, booking a presentation at a national conference—my power to be effective is being stripped from me. The GSA is on hold, and I will most likely not present at the conference.

It is not in my power to change what happens from here forward in regard to my health. So my energy will be focused on making time count. God help me do that well.

Overheard: Survivor

It was warm and sunny the other day, and I was driving my convertible with the roof down. (Sophie was enjoying the ride harnessed in the back seat.) I had on a simple scarf as I waited with other cars at a red light. Somewhere to my right, I heard someone speak out.

"Excuse me!"

I looked around and saw a man about my age at the wheel of a huge six-wheel pickup truck, looking at me.

"Are you a survivor?"

It took me a second. "I'm still fighting!"

"You'll make it. I'm a survivor." He smiled and gave me a thumbs up.

"Thank you!" I smiled. The light changed and we moved onward on our separate ways.

Great Update!

I am finishing my fourth course of chemo, which will bring a new wave of cluelessness. But that's okay, because today's exam showed NO MEASURABLE TUMOR in my breast—and the last exam said the same about the node tumor. The large tumor measured six by seven centimeters at the start of chemotherapy, and the node was three centimeters. The kind of cancer I have (triple negative) is not always responsive to chemo, so we didn't know what to expect.

Ladies and gentlemen, it's working. I am so thankful and full of hope for my future. Hope is the stuff of life.

Tabula Rasa

It’s three days before my fourth and last A/C chemo. (After that I will start a 12-week regimen of weekly Taxol infusions.) As I reported briefly on Facebook, the chemo and your prayers are continuing to work! The node tumor is undetectable and the large tumor continues to shrink about a centimeter per infusion. Can’t wait to see the progress in Monday’s exam.

I’m feeling okay today. My energy came back yesterday and will last until Monday afternoon. The energy drain is due to my very low hemoglobin: I’m quite anemic. It’s like climbing at 10,000 feet every day with no acclimation. That was no surprise, but I didn’t think about the cost of low oxygen on the brain. I’m slower but okay in the moment, and today’s energy is giving me enough brain cells to string some sentences together. But when I try to look back to the past or forward to the future—anything in the “not now”—it’s difficult. Here’s a picture to show you what I see:

Yeah, I don’t see anything either. And I’m not kidding. If I don’t have a picture to wrap around an idea, it’s just not there right now. And I get another dose on Monday of the stuff that takes it away. As long as it’s taking away the cancer with it, I can certainly live with that. I’m spending long stretches of time with literally nothing on my mind. So this is what it’s like to be a guy. ;)

My colleagues and volunteers continue to be wonderfully patient. I have instantly forgotten a question just asked and had to have it repeated. At least I could answer—although now I could not tell you what that question was for the life of me. I am thankful that pretty much all of my responsibilities are for events I’ve done for years, so my mental faculties aren’t being tested too much.

My greatest concern—after my health—is for the presentation I’m supposed to make in February at the national convention for Presbyterian educators. It’s a big deal, the first of its kind, addressing children and sexual orientation and gender identity. I need to be there. But this month was supposed to be the time I spent writing an elementary curriculum to be used in November at my church—with my bosses’ blessing. And today was the first day in weeks I could think long enough to put two sentences together. It all fades away in three days with my next dose.

I’m so afraid it’s not going to happen. I won’t cancel yet, and I might still get a slot for 2013; but this is the year for this subject in our denomination! Dammit, I need to do this, and I will be upset if I can’t. Yeah, I know I have a good reason. I don’t care. This is important. Someone needs to be talking to our church’s educators on this issue, and this year it was to have been me.

Cancer sucks.