Breaking up is hard to do (not really)

My oncologist has kept me alive. The past nine months have been the hardest months of my life and I’m glad she was there to guide me through some of it. But it’s time to move on.

I think she now sees me as a one of those “bad” patients. A patient with the audacity to question a doctor. I’m not questioning her, I just have questions, and sometimes there are no answers. She is an expert on cancer and I have nothing but respect for her knowledge, but I am an expert in me. I think a lot of doctors tend to forget this with their patients.

She asks questions about my health and then dismisses anything I report because it’s not life-threatening. Bloody nose? She tells me that the cancer isn’t in my brain and I should go see an ENT if it doesn’t stop. Eyelids swell? She says there is no cancer in my eyes and that it’s not like I’m going to die from puffy eyes. Joints are swollen? She says they’re not, even when I show her my rings don’t fit. I want to get blood work because I’ve been more fatigued? She refuses to order it because I was only “a little bit anemic” five months ago (!) when she last checked my blood counts. Left hand has pins and needles? She say it’s probably my spine, then she tells me I don’t have cancer in my spine. I never thought I had cancer in my spine, or my brain, or my eyes, but thanks, now the thoughts nag me. I still have all these side effects with no explanations.

She asks questions, but doesn’t really listen. and I can’t have a doctor that doesn’t listen, who’s only in it during the shit storm and then disappears when it gets real and perhaps boring for her.

Every question I ask seems to rub her the wrong way, as if I’m challenging her. I’ve said over an over that I am an investigator, a researcher. I read. I search. I want to learn. She says I should just stop worrying.

Six months ago she sent me off to get a mammogram because she was convinced there was a lump at my mastectomy scar. (No one EVER wants to hear that cancer is growing while actively getting chemo.) Turns out it was just scar tissue. I can’t help but think that if I reported having any of my current side effects six months ago she would have taken them more seriously. Now that I’m out of the woods, my side effects are suddenly meaningless to her.

The fact is thousands of women have the side effects I’m having. If she told me just once that, yes, she’s heard other women having some of these side effects, I’d feel a little better. But not once has she said it. I just don’t get it.

This isn’t technically a breakup because it’s a business relationship that we have. Well, if her business is saving my life, then I no longer need her services. Thanks. Looks like I’m going to live. But I’m not done with treatment, so I need a new doctor, one who sees her or his business as helping me to live as a whole person and not just as a patient whose life needs to be saved.

End result? I’m switching doctors. I’ll be finishing my treatment at our dinky sweet friendly small town oncology office, where I’m not just a number and not just a life to be saved, but a whole person. Let’s see how that goes.

 

 

 

 

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I’ve been nuked

Every road I go down in the cancer journey seems to lead to increased vulnerability. I sit in rooms half-naked and get poked, prodded, weighed, and measured by dozens of strangers. There is a blind reliance on strangers that didn’t exist six months ago that I will never get used to. At some point in each appointment I have to disconnect. There is only so much information I can absorb in one sitting. Thankfully Amelia is at these appointments to pick up my slack.

Radiation has brought up a lot of emotions that I did not expect. I feel uneasy, exposed, and overwhelmed. Just when I think I’ve got my emotions around cancer cataloged and organized into tidy little volumes, some brand new situation surfaces and feelings bubbles up. I simply refuse to ignore my feelings. It does no good for me, and it certainly doesn’t make anything go away. I’d rather ride out the emotions that come with the territory, there’s far more for me to learn on that path than one of of blissful ignorance.

Radiation is some serious shit. A physicist is now part of my treatment team. Beams of radiation blast my chest wall, collar bone, and lymph nodes, annihilating any rogue cancer cells that happen to be hanging around. The mission of radiation is destruction and/or interruption of fast growing cells. I will most likely have a skin reaction. It may look like a burn, but it will not technically be a burn. With burns, damage occurs from the top down through the skin layers. Heat burns more layers with each degree and eventually blisters. Radiation works differently. It damages skin from the bottom up: damaged basal cells (cells below your skin layers) move upwards to the surface of the skin and ulcerate. It is not a burn, and does not act or heal like a burn even though it looks like one. But it all sounds a little creepy if you ask me.

For the next six weeks every week day I will lay topless, hands over my head, taking deep breaths and holding them three separate times for 45 seconds while I receive radiation doses. I take a deep breath to pull my heart away from the radiation beam as much as possible. This treatment will have a whole new healing process that can take two years to recover from physically. The radiation oncologist said two to three years, but I’ll take two, thank you very much.

One bad chemo left. Will I get radiation?

RadioactiveSymbolTime sure does fly when you’re not having much fun. I can’t believe that I only have one bad chemo treatment left, February 10. It’s going to be the end of a chapter in the Cancer Book for me.

But my story doesn’t end there, that’s for sure. Everything has changed and my post-chemo life will begin to show itself. I will still have nine more months of Herceptin, a targeted chemotherapy, but it will be nothing compared to how six rounds of Carboplatin and Taxotere have wreaked complete havoc on my body.

I’m meeting with a Radiation Oncologist next week, and I have to admit I am hesitant to get radiation. I just got my ass kicked from chemo; I’m not too willing to rush into radiation. The kitchen sink seems to get thrown at cancer, but in some cases there’s not enough information out there to tell us what really works and what doesn’t.

I had two positive lymph nodes which is a gray area for radiation. Long-term radiation studies have focused on people with four positive nodes or more. I’ve also done a lot of research on radiation therapy and found out that, yes, radiation can kick your ass in, too. It can fatigue you, burn your skin, change the texture of your skin, cause skin pigment changes, increase your risk of lymphedema (swelling), cause a secondary cancer, increase risk of heart and lung damage (especially if it’s on the left side, which mine would be), and you can only treat an area once time in your lifetime.

I feel like my left side is already severely compromised. I can’t feel most of it, and there is a lot of scar tissue that has been changing and evolving since the mastectomy. I am still getting to know this part of my body again. At my check up this week my breast surgeon told me the actual scar tissue on my chest is the size of a dinner plate, because that’s what was left gaping open when the breast tissue was removed before the skin was pulled together. So what looks like a ten-inch line scar is actually a ten-inches in diameter round area of scar tissue. That’s huge, and it’s still healing.

So far each doctor has deferred to the next. The Breast Diagnostic Doctor: Whatever the surgeon days, do. The Breast Surgeon: Whatever the oncologist says, do. The Oncologist: Whatever the radiation oncologist says, do. I don’t know, my gut says don’t. And who knows, maybe the Radiation Oncologist will see no need to treat it.

All I know is that if radiation is recommended, it is going to be a hard sell. Since the Herceptin is supposed to be a nail in this cancer’s coffin, I’m going to need to see some serious data showing that the benefits of radiation will outweigh the side effects.

 

 

 

Can I work while I’m getting chemo?

This week I decided that I needed to push myself a little after my chemotherapy treatment. I know, I know, what the hell was I thinking? But I wanted to get dressed, leave the house, and work, even if only for an hour or two a day. I assumed that because my doses were lowered by 20%, I’d feel 20% better. I was wrong. I still felt like crap, actually more nauseous than ever.

I’m realizing more and more that I am a closet optimist (don’t tell anyone), though it’s not that I necessarily come off as a pessimist to others. I feel like pessimism is based on the past – It will suck now because it sucked before – and I see optimism as blindly relying on the future: Gee, Wally, it’ll be great, won’t it? I consider myself more of a realist. I spend most of my time in the present. I like it here.

There is a mind-over-matter component in dealing with cancer that I didn’t expect to find. Chemo kicks my ass in, make no mistake: I am a bag of poisoned flesh. But I managed to get some serious physical work done this week at the new building simply by telling myself to do it: Eight hours of work the day after chemo, laying subfloor in the kitchen for tile (thanks, steroids), and two hours on each of the following three days putting up sheetrock, repairing plumbing, changing out a light fixture, installing an outdoor spigot, demolishing an old fence, and loading the truck for a dump run. The closet optimism paid off. This doesn’t mean I’ll be building a house (at least not this week), but I can work. I can feel like crap and get something done, just at a slower pace, and that’s ok. Movement is life.

 

 

 

What does chemo feel like?

I thought I had a pretty good sense of how chemo would feel. I knew it would be worse than the mastectomy surgery, I just didn’t know how much worse. Chemo is like having surgery six times (once every three weeks), and having to recover six times, but each time your recovery takes longer. My body’s response to chemo is not predictable. This is no I have a headache, I take ibuprofen, my headache is gone kind of scenario. Chemo kicks your ass.

Here’s how it starts: The day before chemo I drink about a gallon of water and take steroids twice. Steroids make feel like somebody else is inhabiting my body, a spastic agitated person whose language I don’t understand. I feel possessed. I usually can’t sleep that night.

Day one: Chemo. I drink at least a quart of water before treatment. All medications during chemo go into the port that’s implanted in my chest, so before we leave for Rochester I put a numbing cream on the port site.

First the nurses clean the port by injecting saline into it, then Heparin, an anti-clotting drug. A blood sample is taken and sent to the lab because they need to make sure my body can handle the chemo. A large dose of Benadryl is injected. I immediately get drowsy. I’m talking about it’s-hard-to-hold-my-head-up kind of drowsy. I watch myself slip away and it’s hard to speak or focus. I hate it. I’m at least 50% incapacitated for the duration of the treatment and the rest of the day.

The next injection is steroids. This is the reason I’m not 100% incapacitated, because the steroids counteract the effects of the Benadryl. Then comes a cortisone injection because I had a reaction to the chemo in the past. Then my chemo course of Taxotere, Herceptin and Carboplatin. Each drip takes at least 45 minutes. Some of the meds I can actually taste as they go into my port. They’re nasty, like cleaning fluid or new plastic.

If I’m lucky, I haven’t reacted to anything this week and we drive home. It’s dark by the time we get there.

Day two. I take steroids twice. I am not myself. I’m manic and agitated, but manage to get some work done on the Trumansburg building. My taste is 90% gone. The only things that vaguely register are bitter tastes and peanut butter. Taste won’t come back fully until March. That sucks. Even water tastes bad.

Day three. I have the worst heartburn I’ve ever felt and take Ranitidine which makes it about 70% better. My body temperature goes down two degrees and it’s hard to stay warm. I am incredibly tired and feel like I’m getting the flu combined with a stomach bug: headache, joint pain and diarrhea rule my day. I spend much of the day on the couch.

Day four. The heartburn is worse, and the Ranitidine is less effective. Most of the day is spent on the couch in pajamas. Body temperature is still low. Flu and stomach bug symptoms are worse. Sharp pains in my joints and organs. I can’t eat.

Day five. Heartburn continues, and the Ranitidine helps a little. I think maybe I’m feeling better and the flu-like symptoms seem to have calmed down. This is the day I have a false sense of feeling good and want to take on a project, but Amelia reigns me in from doing something like using a power tool. My head is in a fog with dizzy bouts throughout the day. Amelia and I go for a walk. I need to nap.

Day six. The heartburn lessens. My flu symptoms are mostly gone, but I can only work four hours before feeling exhausted.

Day seven. I just lost six fucking days. I’m working. All damn day. I don’t care how tired I get.