April 22, 2012

Ordinary Time

Treatment is over. I had the last radiation appointment on Wednesday. Now it's just healing from the effects of radiation—pretty strong in my case—and then follow-up visits here and there.

This is "ordinary" time, but it feels anything but ordinary. It's surprisingly somewhat melancholy, I suppose because there is nothing left to do but wait and hope. It will be at least a year before I can consider reconstruction because IBC has a real bad habit of coming back, most often in the scar tissue. My prognosis is good and I am very hopeful.

I have a lopsided appearance: DD on one side, slightly concave on the other. I can't wear a prosthesis until all the effects of radiation are gone. I honestly don't care. I forget about it much of the time. I will deal with the prosthesis when the time comes.

I have finally been given permission to lose the 20 pounds I gained from steroids while on chemo. Well, the steroid weight has gone—about five pounds—and the rest is from the insatiable appetite those miserable steroids gave me. This is my new "treatment," to regain my fitness and shape.

I'm going to NYC in June, and I need to be fit enough to walk the streets of Manhattan for three days. I'm SO looking forward to that! I will also manage a too-brief meeting in Connecticut with a delightful woman who was diagnosed a month after me. She and I have talked frequently (and written real snail-mail letters during my enforced silence) and we are both excited to finally meet. I'm so grateful to her son-in-law for introducing us.

This community of "survivors" is a wonderful network of support. There are 34 women and one man at my church—where I work—who are survivors of breast cancer. We reach out to each other to ask for help and to offer it. That is a hidden blessing of this terrible disease.

So now it is time to put it behind me. Let's see how long it takes for me to truly do that. Thank you all for coming along with me and supporting me so kindly through all of this journey. I'm so lucky to have you here with me.

April 14, 2012

The Titles I've Inherited

A few months ago, while I was in the midst of chemotherapy, I was driving home with the convertible roof down. I wore a scarf to cover my bald head. As I waited for the light to change, I heard someone shout “Excuse me!” to my right. I turned to see a man a little older than I behind the wheel of a huge one-ton pickup truck. He called to me.

“Are you a survivor?”

I thought for a split second. “Still fighting!”

“You’ll beat it. I did, and you will too.” He smiled and gave me a thumbs-up.

I thanked him as the light turned green, and we both went on our way.

I hear constantly that I am a cancer “fighter.” What a picture: strong, defiant, in control. I don’t feel especially strong, just lucky at how I’m getting through this with so few problems. I am certainly not in control, but I learned some time ago that control is an illusion anyway. Defiant? You bet. I’ll own that one. I am not going gently into that good night. I visualize and pray about healing completely, and I’m making long-term plans.

To be a cancer fighter is actually a passive role: one simply walks from one appointment to the next, waiting only for what the next test reveals, and undergoing treatment as best one can. I can’t say that I’m fighting. Fighting entails facing one’s fears by making choices that entail risk. Cancer treatment certainly has its risks, but it’s not like I have much choice. I’m just walking a path so many have walked before me, many who say “me too” from further down the trail. We have in common the experience of treatment and emotional setbacks and fatigue. Some are fighters, I suppose, but I feel less like a soldier than simply one who soldiers on.

When will I take the title of “survivor?” I’m still in treatment, so I don’t feel I’ve earned it. Technically, as long as I’m alive I’m a survivor. But the term puts everything else in past tense, and I can’t do that yet. I’m not sure when that will happen. As my appearance approaches “normal” again, people will forget I’m in treatment or recovery. They won’t mean to, but it will happen. Normal is good. I can’t wait to feel the same way.

While life continues in its natural rhythms, my cadence follows the beat of cancer. Everything I see, do and feel is experienced through the filter of cancer. Only after my positive prognosis did I begin to hear other music, and it’s lovely. It’s the music of living.

April 9, 2012


Has it really been that long since I've updated? I'm sorry to keep you in the dark about my progress.

When I had to have the throat surgery, I didn't realize what a hit I would take with that news. It took me a while to realize that I was expecting a constant move upward toward healing, and this was a sudden drop. I was angry too that this could have been avoided.

I had a very brief taste of life with a disability. People were kind and helpful everywhere, without exception, but just about everything that called for discussion was more difficult. When I motioned I could not speak, people universally went mute and started gesturing or writing. Even after I would motion clearly that I could hear, they would nod and continue to gesture or write. I would have laughed out loud if I could have. I used a lot of notes.

My speech therapist recommended a $2.00 app called Speakit! for the iPad, and it was very helpful. I was able to type and have my words spoken by a voice of my choosing. Most of the time it was great; occasionally it mangled a word to something unrecognizable. I was able to store text on the iPad so that I could plan ahead for meetings and long conversations. I was even able to use the app on my iPhone, which was handy in restaurants or close conversations. I highly recommend it. (You can purchase voices for other languages and have them speak for you. Write in English, they speak in whatever language you select. Great for traveling!)

Even so, it was awkward for people to wait while I typed or texted. Often the conversation sped ahead and what I wanted to say became moot. It became easier to remain silent. It sure made me crystallize what I really wanted to say. I became more a spectator and less a participant.

What I missed most was being able to laugh, and I only realized that yesterday when I laughed for the first time. (I'm not allowed to whisper or yell, and my laugh is pretty loud.) I'm allowed ten minutes of speech per hour this week. It feels so good to speak again!

Now that my throat is getting better, the effects of radiation are starting to show. It's not good: some get pink skin, some get a rash; I get red skin and a very angry rash. It really hurts, and I have four more weeks to go. (That's two weeks of radiation and two weeks of delayed reaction.) However, I see this treatment prolonging my life, and four weeks of discomfort is something I can handle. Carefully. I have fashioned a one-cup bra that gives me support and won't rub on the affected area, so I'm very pleased with that.

None of this has stopped me from working, although I continue to rest at home. My colleagues have always been cheerfully supportive and helpful.

Abe continues to wait on me hand and foot. He's been the best husband ever through all of this, and I love him dearly for his patience, strength, and tenderness. He has been an anchor for the whole family, all while working about ten hours a day, six days a week. There is no way I can repay him for all that he does except to love him with all my heart. I'm so lucky to have him at my side.

Cross-posted on CaringBridge.org