Archive for June, 2010
Be careful what you wish for. It might come true.
The awful Evil Blister started bleeding over the weekend. I have been in such horrible pain that it has left me subdued. (Any other pain connoisseurs out there know what I’m talking about? The it-hurts-so-bad-I-can’t-move pain threshold?)
I was prepared to suck it up for my last five treatments today. I’m in the electron boost phase of things, treatments 29-33. The tech set me up under this unhappy looking little lens.
It’s supposed to beam electrons on me, specifically on the scar tissue, which is the most likely place I will experience recurrence. The electrons “boost” existing radiation to the surface of my skin. My oncologist warned me last Thursday that this area will become increasingly painful through the week.
I got my boost — one sixty second blast — and then I went to go see my radiation oncologist for my weekly check up. She asked about my pain and I explained it, matter-of-factly. (I told you, I was subdued. I was much more anxious and feisty last week.)
She looked at my skin and said, “You can stop now.”
I was nonplussed. I had not seen this coming.
“Your skin is just the right color red. It’s hard to achieve. Sometimes it’s too much, sometimes it’s too little. But you are just right.”
I discussed the matter with her in some detail to understand her thinking. The electron boost is not a part of all cancer centers’ protocols, she explained. It’s more conservative because, statistically, it reduces the risk of recurrence by 1-2%. But there are many radiation oncologists who would not have even ordered this treatment for me, with my particular profile. Considering how my skin has responded, she felt comfortable telling me I could stop.
I shared with her my litmus test for any treatment decisions. “Can I look my children in the eye and tell them that I have done everything I could?”
“Yes. You will be able to say that,” she assured me, without a second’s pause.
I spoke to my oncologist, who feels that the radiation oncologist is very conservative and would not be suggesting this if she did not feel it was safe. And radiation is not a neutral treatment. It increases the risk of lymphadema, skin and muscle hardening, and future skin and blood cancers. If my skin breaks, I risk infection.
When I spoke with my husband and caught him up to speed, he listened carefully. He could hear my hesitation. He thought I should stop. I wasn’t sure. He asked if I wanted to send out an APB to my oncologist contacts and get their hit on the decision.
After talking it through, I realized something. A doctor has to bring two perspectives simultaneously to a clinical decision like this. On the one hand, you want them to know all of the large-scale data, the evidence that is the basis for evidence-based medicine. On the other hand, you don’t want them to treat you from a cookbook. You want them to consider your physiology, your anatomy, your clinical response. They need to know how to think about a particular case.
This is where professional judgment comes in. This is why it is so important for me to understand how my doctors weigh decisions and make use of these two kinds of evidence. I need to trust their judgment because, as much as I geek out, I do not have their expertise.
This is what my tumor cells looked like: Her-2 neu protein overexpression.
These are the little buggers that we are banking on having eliminated.
My doctors know my case. They know what my clinical response was to chemo. They know about the surgical results, everything from pathology to the size of the margins around the remaining tumor. They see the particular color and texture of my skin. They have been prudent and conservative in their judgment every step of the way.
The APB calls are most useful when I need more data, more interpretations based on easily communicated things. I am not sure I need to muddy the waters with more opinions when the people who have closely followed my case have articulated theirs.
I worry that I will regret a decision to stop treatment now if I get a recurrence on my scar site. But I also worry that if I keep going and end up with a secondary lymphoma, I will also second-guess a decision to continue.
As a doctor friend told me, it is disheartening to realize the limits of medical knowledge. This is especially true when it is your life at stake.
I have been sitting under the weight of this all day. Either way I go, it will be a leap of faith.
UPDATE: I stopped. I’m so so glad.
Posted in Treatment | 4 Comments »
A major psychic challenge of cancer treatment comes down to your ability to answer the following question:
How do you continue to do something that makes you feel bad, knowing that it is good for you?
I felt great when I was diagnosed with cancer. I know that is not so for everybody. I was strong and healthy (sort of). This treatment has made me feel like crap. Nothing in my previous experience has taxed my ability to cope as much as this.
I’m in the homestretch now. Just five more radiation treatments left, and the last major event in the Triathlon from Hell will be complete.
The problem is that I am having difficulties being compliant. Every inch of my being wants to run away from that awful beam machine, even though I know it is helping to save my life.
As you can see, my skin is beet red. It’s Kentucky Fried. Thanks to the tech who did my echocardiogram this past Thursday, I also have a nice blister where the echo sticker removed a chunk of my skin. All pain emanates from The Evil Blister. It is the source of my current torture.
That white spot is The Evil Blister. I think it’s now yellow. Yuk.
Next week, I have five days of “electron boosts.” I had counted down my treatments last week, thinking I would be home free now that I was done with the big beam. Alas, when I met with my oncologist last Thursday and showed her my skin, she grimaced and warned me that the boosts would probably make my scar “really hurt.”
As opposed to the lightly tortured feeling I am experiencing now, I suppose.
I don’t wanna do it. But I know I have to. So my friends and I hatched a plan. I call it the Bribe-a-Day plan. Every day this week, I am going to treat myself to something nice. It will be my reward for showing up and finishing out my torture treatment. I will cash in some of the gift certificates my friends sent me for massages or facials. I will make long phone calls. I will linger in the bookstore, eat gelato, buy a lovely scented candle or a bouquet of flowers, and have my feet rubbed and toenails painted.
The genius of this plan is that it’s already working. I am looking forward to my daily treats, enough so that I will endure the blistering, burning, and peeling that will be part of the package.
Tags: attitude, coping, courage, daily life, gratitude, mental health, silver linings, support
Posted in Treatment | 4 Comments »
Imagine the worst sunburn you’ve ever had.
Now imagine that your doctor tells you to go lie out at high noon for a good hour or two. With baby oil on your skin.
This isn’t me. I’m not wearing a bikini & I don’t have that much hair. It’s just to evoke the feeling of burnt skin. Mine is actually much redder.
That’s what this feels like. I’m in my last two weeks of my 6 1/2 week daily radiation regimen. I’ve dutifully gone to all my treatments five days a week, caring for my tender skin with special lotions, eating the high protein diet, trying to stay hydrated. Up until now, the weekends have been a respite, giving my skin a chance to heal and not look totally scary. Then I face another Monday, bracing myself for another five days on the beam machine.
I carefully treated my skin on Friday, Saturday and Sunday. By the end of the weekend, I felt dread at how lobster-toned it remained. This morning, the pain and burning woke me up at 4:30 am.
When I arrived for my treatment a few hours later, I told the tech that it just didn’t seem right to keep going. It just didn’t make sense.
“The doctor’s here today. Let’s have her take a look at your skin and see what she says.”
Adding to my anxiety, today was Bolus Day. My radiation regimen requires every-other-day bolus usage, and the bolus actually makes my skin hurt more.
I changed into my awkward robe (which I no longer bother tying) and went into the beam room. I huddled up on a chair, waiting for my doctor to come in. She looked at my skin and told me that I could take a break if I was concerned, but that she actually wanted to see it get redder.
I was horrified. She offered me a prescription cream to help with the pain, but I could see that she was not particularly thrown by the worst burn I have ever experienced.
After she left to get my script, I talked to the techs, whom I like and trust.
“It might be worth taking a break if you could take the whole week off,” one said. “Really relax, don’t work, do nothing. It might help.”
“I have three kids,” I said. “That’s impossible.”
“Well, you don’t have blisters. Your skin isn’t broken,” said the other tech. “Honestly, the radiation is in you, so if you stopped now, your skin isn’t going to heal that much in a week. It’s only going to delay your treatment.”
I thought of how close I was to crossing the finish line in the last event in my Triathlon from Hell. I thought of what happens to marathoners when they hit mile 20, how there is nothing left to metabolize but muscle. I thought of how eager I was to get my life back. I need to keep going.
At the same time, I felt less compliant than ever. Screw it, I thought. I considered walking out of the radiation treatment altogether. This situation reminded me too much of what happened when my self-preservation instincts kicked in during chemo.
By chemo #4 (of 6), I had reached the point of asking my doctor, “You don’t seriously expect me to keep putting this crap in my body?” As it turned out, I almost stopped breathing during chemo #5, leading her to reduce the dose. I know my own body’s limits. Maybe my body only needs 2/3 of the treatment that other people my size need. Maybe I was going to face some other bodily awfulness by denying these instincts now.
I told the techs what I was thinking. They patiently listened to me air my concerns. Then I remembered the important statistic. Completing radiation lowers my chances of recurrence in my chest wall by 30%. I have to be able to look at my children and let them know that I did everything I can to keep this cancer monster at bay. And those are pretty good numbers in CancerLand.
I sighed, hitched up my robe, and climbed on the table. I was ready for another dose.
Tags: attitude, body issues, coping, courage, doctor-patient interaction, education, essay, parenting, side-effects
Posted in Treatment | 7 Comments »
Today is my wedding anniversary. It’s also Fathers Day. I am reminded of how incredibly fortunate I am to have landed my husband all those years ago.
I love this picture. It captures so much about the kind of daddy he is.
Cancer treatment has tested our relationship in a way that new jobs, cross-country moves, and newborns can’t touch. In all of those other stresses, we were a team. We know each other’s strengths and weaknesses. We communicate well. Although we don’t always see eye to eye, we share a set of basic values in how we live our lives. We know how to have fun and cut loose. We know that we can depend on the other one to come through, time and time again.
During this treatment, I have had to renege on many aspects of this partnership. Over the past 7 months, I have not always been able to step up when I can see he has given all he can and needs a break. I have not been able to help weigh options to find the wisest parental intervention. I have not been a good sounding board for things going on at work or in his relationships. I have not been able to say, “Honey, you’ve had a long day. I’ll get this one.” My husband has had to pick up most of the slack.
I have often talked about the crazy roller coaster ride that treatment has put me on, but my husband has had quite a trip himself. Since I had a longer stretch than expected between surgery and radiation, I started to get back some of my old vim and verve. I made a birthday party, complete with homemade cake, for my 10 year old. I handled Laundry Day from start to finish, from washing to folding and putting away. I cooked dinners. I cleaned out layers of detritus from my pack rat 7 year old’s room.
In this reprieve, my husband collapsed with two back-to-back bouts of strep throat coupled with profound exhaustion. Although I felt satisfaction in pulling more of my weight and letting him take care of himself, I lacked the generous grace I usually aim for, given that I was running at about 75% of my usual energy.
Last week was a real test for us. The radiation fatigue kicked in after 4 weeks of treatment. Our car’s gas tank got punctured, requiring a two-hour tow truck wait in 100˚ heat, hours of phone hassles with insurance people and mechanics. During a brief storm, a tall tree in the woods behind our house called it quits and let go of the soil, crashing into our back fence. And my husband got punched in the face. He was in a Thai boxing class. A yellow belt sparring partner knew just enough to be dangerous and popped him in the nose.
Right now, I can’t pull my weight. My efforts to step up and help him let go fall short. Between my limits and his depletion, the gap between his needs and my contribution is like nothing we have have ever experienced before.
All I can hope is that, over time, my energy will come back and we’ll find some kind of equilibrium again. In the meantime, we still can sing the Beatles in harmony and spontaneously break into a romantic dance in the middle of Laundry Day.
I guess we’ll muddle through somehow.
Tags: awkwardness, caregivers, changes, coping, daily life, essay, gratitude, healthy people, hope, identity loss, parenting
Posted in Treatment, Wellness | 6 Comments »