Life after chemo

My last bad chemo was Wednesday (taxotere and carboplatin), and I find myself reflecting and wondering, What does this all mean? Where am I going next? It would be easy to disappear back down the path into “normal” life, but I choose not to.

It’s common for cancer patients to get depressed and disillusioned when their chemotherapy regimen has ended, and it makes sense when you think about it. For the last 18 weeks I’ve had continuous contact with nurses and doctors who monitored my health. In some ways getting chemo is sickly comforting – it’s supposed to be destroying cells that want to destroy my body. And now I’m not getting it anymore. The security net of chemo has been taken away. Now I get to free fall and figure out recovery on my own.

You can see the chemo on my fingernails like growth rings on a tree, except it’s not growth, it’s destruction. If you look closely you can see six ridges on my thumb nails from the six chemo treatments. Interruptions in my cell growth. My anti-growth rings. One by one the ridges will disappear over time as my healthy cells take back my body.

With chemo out of the picture I am getting a glimpse of where I’m headed, but I’m also looking in the rear view mirror. Everything has happened so quickly and I really haven’t had time to grieve the loss of my breast and five months of my life. Chaotic doesn’t even begin to describe how the last five months have been. When I take a hard look, the chaos has been around a lot longer than that; it’s been more like two years. Cancer shoved that chaos over the edge adding in a big dose of terror and mortality.

It feels like I’m going backwards, something I don’t really ever do, but I have to if I’m going to process all of this in a healthy way. I have to back up to my mastectomy and take on those feelings. I have to figure out what this all means for me and where I am going next. Backwards is the new forward.

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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.

 

 

 

This is the chemo diet

Chemo has killed most of my tastebuds, literally. They’re all but gone. A few sense a hint of salt, a couple increase sour by 1000%, and the rest pick up every bitter flavor known to humans. My mouth feels coated, and for lack of a better word, hairy. The tip of my tongue is numb, like it was burned sipping a scorching hot cup of coffee.

When I realized that all I could really taste was bitter, I sampled all the spices in our cupboard: allspice, basil, cardamom, cayenne, cinnamon, black pepper, garlic, cloves, mustard, paprika, sage, thyme, ginger, coriander, fennel, salt. What I learned was that most spices are bitter, really bitter. Sage was the worst (once one of my favorites), and garlic and black pepper were almost as bad. Surprisingly, cinnamon is one of my new faves (it’s really good mixed in with black beans, btw). And salt is my new best friend.

Regarding foods, I now prefer plain and white. It’s very unlike me to want to eat white foods, but during chemo you eat what you need to eat. Malnourishment is a very common issue during chemo. You have to find what foods work for you and stick to them. For me, it’s mashed potatoes, oatmeal, eggs, corn, white gravy, bread, broth, chicken, pasta with butter, yogurt, soft cheese, white beans, white sugar, and for an attempt at a little flavor, caramelized onions.

There is no joy in eating when everything tastes bitter or like nothing at all. Today I drank a Coke and it tasted like mildew to me. I tried to eat a piece of sourdough bread, and it was like I bit into a lemon peel: intense  and revoltingly sour.

This is where mind over matter can help. I keep reminding myself that food tastes good, and I try to override my brain which is screaming at me to stop eating. And it works, to an extent.

I cannot wait for chemo to be over so I can once again enjoy pickles, hot sauce, sausage, squash, stinky cheese, citrus, champagne, or as Amelia says, everything but stew. I love food. Except stew.

Conclusion: Life is pretty damn boring without tastebuds.

 

The is not the chemo diet

Chemo fries fast-growing cells all over your body: the lining of the mouth, gut and respiratory tract, bone marrow, hair, nails, and skin. All of these things take a serious hit – my bald head can tell you that. There are a lot of things that I’ve done to try to minimize chemo’s effects.

The one thing I don’t do is take any supplements or vitamins without checking with my doctors. You don’t take antioxidants that help repair cells when you’re trying to kill cells, you don’t take things that are processed by your liver when your liver is already taxed, and you don’t take things to try to boost your immune system when it could also boost cancer cell growth.

From day one I read everything I could get my hands on, scouring for information, for answers. Folic acid, vitamin A, vitamin E, vitamin C, milk thistle, green tea extract, mushrooms, antioxidants, garlic, alpha lipoic acid, marijuana. The first few weeks I’d go in with endless questions for my oncologist, “Have you heard about this? Does this help? Can I take this?” It was a resounding “NO” every time. I finally got it, stopped searching for the magic bullet, and let the chemo do its nasty work.

Chemo is quite a ride, and you can’t get off until it is over. You have to hunker down for 18 weeks (or more or less, depending on your regimen), endure it, learn from it, grow from it (not the cancer though – it can die) and begin rebuilding when it’s over. After chemo, that is the important time. That is when the real recovery begins.

4th round of chemo

Today was the over-the-hump-day for chemo. I am now more than half way through my treatment. I’m still quite neutropenic, and my liver numbers are through the roof, and will be for the duration. I will try to lay low for the next two months.

I’ve had some discomfort in the area above my mastectomy scar for the past week. It feels like it’s bruised and tender to the touch. Today during my exam, my oncologist found two nodules (lumps) there. Big trigger of emotions for Amelia and I. BIG. We both felt like the bottom dropped out, again. The doctor said they could be cysts, but she was very concerned and said I need an ultrasound as soon as possible. We are trying to process this information. Worry does not help. Assuming does not help. Waiting for answers is torturous.

I’ve always had cystic breasts. When I would get my yearly mammograms I’d get my cysts aspirated as well. And there were LOTS of them, giant “whoppers,” as one breast specialist told me. When a surgeon performs a mastectomy he/she tries to take all the breast tissue. It’s hard to know when to stop cutting, and inevitably some breast tissue could get left behind, especially when they’re dealing with a very large D cup. That’s why it’s possible these lumps could be my typical cysts, even though my breast is gone.

Once again, it’s crappy timing around a holiday weekend, just like my original diagnosis where we had to wait through Labor Day for an MRI. Today is Wednesday, and the ultrasound appointment isn’t until Monday. There’s a really good chance that the lumps will get biopsied to rule out the worst case scenario – that cancer is growing and thriving on my chest wall while I am freakin’ getting chemo. Hell, no!

I just keep telling myself, They’re filled with benign fluid. They are filled with benign fluid.

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.

 

 

 

There are no wrong questions with cancer

My numbers are in a healthier range this week. Just in time to get another whack of chemo. This time they dropped my doses by 20% for both the Taxotere and Carboplatin.  (I have a new tagline for Taxotere: “Taxotere, putting the tax on your liver since 1996.”)

When you are getting chemo, your liver can have an indirect effect on keeping your white blood cells, monocytes and neutrophils at a healthy level. Some of my liver numbers are high (AST, ALT) which means it is taxed and having a hard time breaking down the chemo. It also means that the chemo from three weeks ago is still in my body, hence the low blood cell counts. Lowering the doses should give my liver a chance to rebound.

I’ve said this before, but you need to be an expert in your own cancer. You have to have a doctor’s mind, do your research, learn how to read your pathology reports and blood test results. Ask questions, lots of them. There are no wrong questions. This is not a time to stick your head in the sand. Be the squeaky goddamn wheel if you need to be.

Last week at chemo, the nurse was not going to take blood for a CBC panel. That’s what tells you your neutrophil, monocyte, and white blood cell counts. Since the week before they told me I was neutropenic, I wanted to know where those numbers were. The nurse flat-out said no. This has been the first and only time I felt not listened to and had to argue to get my needs met. I challenged the nurse. She didn’t like it, but she requested the blood work, and guess what? I had zero neutrophils, kind of important to know. So push, fellow cancer sisters and brothers, push.

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.

Round two

If there is a war, my enemy is side effects. The cancer is here. Who knows what the future holds for it? It might be gone, it might not. It might end up killing me. There are no reassurances so I’d rather focus my energy on lessening the  side effects, taking care of my mind, and taking care of my body.

Yesterday I had a pretty intense reaction to Taxotere during the chemo infusion. Amelia wrote about it right after it happened. At first I thought I was having a back spasm, but then I realized I was having a reaction to the chemo drugs. It felt like the bottom six inches of my spine were under immense pressure and it was going to explode – like that scene in Alien when the alien bursts out of the guy’s stomach.

I’m not so good at showing pain. I sit with it and don’t react too much vocally. Once again, it’s a time when something is really, really wrong and I get very still and silent (unlike when I accidentally hammer my finger and there’s a lot of yelling, pacing and swearing). You would not know anything was seriously wrong. In fact, Amelia didn’t even grasp the gravity of what was happening. So now I get to add another drug to my cocktail: hydrocortisone. Fortunately, the nurses took immediate action and within five minutes I was back into my Benadryl stupor. But goddamn that was some serious pain.

Clearly I can’t assume anything. What happened last round doesn’t equal what will happen this round or the next four rounds so I will hold my breath the next few days and hope for the best. It’s all I can do.

I can now see my mind and body’s reactions to what is happening throughout this process. From You have cancer to You will need a mastectomy to It’s in your lymph nodes to Chemo is not optional to Your hair will fall out to Hello, side effects, my body wants to squat on the floor with my head in my hands and take the duck and cover position in the corner. My mind wants to destroy everything in the room and throw things out the window. It’s 100% pure instinctual reaction. I know that I can’t get on either one of those trains. I need to see them, acknowledge them, and then watch them go by.

Chemo reaction

by Amelia

Leah reacted to the Taxotere today. If there’s one thing we’ve learned so far about chemo, it’s that you can’t get through it without side effects. It is hopeless to hope to avoid them all, so brace yourself for the ride.

Leah was zoned out in a Benadryl fog in her chemo chair (think vinyl nursing home recliner) when the back pain hit. In Leah’s words, it felt like her lower spine was about to explode. A flurry of nurses surrounded her immediately. One took her blood pressure, another yanked the curtains shut, someone temporarily stopped the chemo and increased her fluids, and somebody hooked her up to oxygen. The nurse practitioner was in the room in under two minutes. Two minutes after that Leah got a shot of hydrocortisone, and in two more minutes the pain was almost completely gone. The nurses kept an eye on Leah for a while to make sure she was okay before the offending chemo was started again.

Normally this place is weirdly quiet, the silence only interrupted by an occasional nurse shouting to an elderly hard-of-hearing patient “What are you doing for Thanksgiving this year!” Leah’s reaction is definitely the most interesting thing to happen on the chemo unit so far. No one wants to have a chemo emergency, but if it happens, you want a speedy and excited crowd of medical staff in your cubicle with you tending to your needs. Thanks for the excitement, Leah.

leah with chemo

Hair today…

Only one week of a mohawk, darn it! Last night I had to shave the rest of my head. Too much hair was shedding and I don’t want to leave a DNA trail everywhere I go. When you go from a mohawk to a stubbly head it’s not nearly as fun. It was good to shave it in stages though; it gave me a chance to grieve. I was not a griever or a crier before cancer because I was always looking at the future and thinking about what’s going to happen next. Everyday my hair fell out was like seeing the future, and my future self is hairless.

I don’t just lose the hair on my head, I lose ALL of my hair. Important places that we take for granted like nose hair, ear hair, eyebrows and eyelashes. Nose hairs are filters for dirt, viruses, and bacterias. Ear hairs help you hear. Eyebrows move moisture away from your eyes and eyelashes are a protective barrier for your eyes. I’m going to lose it all, including the unmentionable pubes. Ha! I just mentioned them.

Hair falling out isn’t a gentle process. I thought it would just fall out without me noticing too much, but my scalp feels like a pony tail tied too tightly with a scalp sunburn. My hair follicles are inflamed as are the rest of my innards from the chemo.

A few weeks ago we were having lunch with Amelia’s parents and her Mom asked if I’d wear a scarf or a wig. “No way,” I said. “Hats only.” Then Amelia dropped the wig bomb on me. She said, “Why don’t you get a pompadour wig, you know, like an Elvis wig? Your insurance might cover a good one. You’d rock the balls outta that.”

WHAAAAT?! I never thought of that! Wait a second, I might get a wig because it could be FUN?! There was a lot of giggling. “A pompadour,” I said quietly, “a pompadour.”

We shall see….

Hair

So many feelings today. The hair loss has begun. Nothing says cancer like a bald head. It’s another stab from reality: this is really happening. I knew my hair would fall out, but I was still not prepared this morning when I ran my hand through my hair and came away with a handful. I actually laughed for a second, and then the tears came.

How could I possibly prepare for this? It’s incredibly unnatural. It is not a choice. In the past I chose to buzz cut my hair which was empowering. Now I am losing my hair because of a situation that I have no control of and it’s anything but empowering. It’s humiliating. I’m realizing that your identity gets systematically stripped away when you have cancer. I could welcome this on an existential level, but when it’s happening on the physical level, it is damaging to my psyche. I get inspected, poked, prodded, weighed, measured, asked about my bodily functions, lose my breast and now my hair. I had just started adjusting to not having a breast and now I have to navigate another layer of grief and sadness.

Is this the best that we can do? Kill every living cell in the body and hope that it will kill any free range cancer cells floating around? We can send people to the moon and we can’t treat cancer without destroying parts of ourselves?

Cancer is not a choice. It pisses me off that some people out there think, It’s just hair, it’ll grow back. Clearly, these people’s worlds haven’t been turned upside down by one awful word: Cancer. I envy them.

An interview with Leah and Amelia about Leah’s hair loss can be read here

Surgeons aren’t gods

I really like my surgeon. He is a fact-based, down-to-earth, extremely driven man who takes his time to explain every detail to us, even when he goes way over our heads. This is a man who reads, studies, and soaks in everything he can about breast cancer. He is a breast surgeon, not a general surgeon. There’s a BIG difference. He has operated on thousands and thousands of breasts. During our second meeting with him, he got a text message about a new study published that day and was excited to go home and read it. This is my guy.

The day after my surgery, he visited me in my hospital room at 7am. He sat on my bed and talked to us for half an hour before his regular day even started. He was hoping to get me in a trial for people with micrometastases but the deadline was before my pathology report would be back. He offered no reassurances about my cancer, and I don’t feel like he should. No one should tell you everything is fine when they don’t know that it is. Hunches don’t work here, numbers do. My surgeon has never said everything will be fine. He has said, “For all we know, you could be cancer-free right now. But we don’t know. There could be some cancer cells floating around in your body, or there might not be. They’re too microscopic to see on any scans or tests.” Regarding treatment, he deferred to my oncologist. He told us that he has opinions, but will always defer to the oncologist because they are the treatment expert.

Not all surgeons are the same. I was incredibly unimpressed with my mom’s surgeon. He was an oncology surgeon, yes, but he seemed fairly clueless about breast cancer. On the day of her surgery, he sauntered in and questioned what the oncologist wanted done in preparation for chemo, because he said my mother didn’t need chemo. As if the surgeon’s opinion was more important than the oncologist’s. When you go in for surgery, it’s all pre-planned, all written up, orders made. There should be no question about what’s happening. After we pressed him, he called her oncologist – an hour before surgery – because he thought he knew best. The oncologist told him to stick to the plan.

I don’t get it. Don’t you usually check into this shit before you cut someone open? I mean, really? Don’t you check into the patient’s history? Mom needed a port for chemo and the surgeon’s opinion – which he repeated more than a few times – was that she didn’t need chemo so she didn’t need the port. This made my mother and father very anxious. The fact is, Mom is HER2+. It is an incredibly aggressive cancer, and the protocol for the size of her tumor is to administer chemo. Fact. You don’t need to be an oncologist to know this; you can simply google it.

And after my mother’s lumpectomy, the surgeon waltzed back into her room and declared her “cancer-free.” Once again, if you know anything about HER2, you know that HER2 likes to travel, and there is a significantly greater chance of recurrence without chemo. How he can be an oncology surgeon and be this clueless about the nature of breast cancer? Two thumbs down, Mr. Surgeon.

Fortunately, Mom has a fantastic oncologist: smart, detail-oriented, and a cancer-survivor himself. She is in good hands.

Chemo schedule

There are times when you are acutely aware that you are the youngest person in a room. A chemotherapy treatment center is one of them. These are the times when I think, “I’m not supposed to be here.” But here I am, in a room with people decades older than me who also have cancer, and they’re looking at me thinking the same thing, She’s not supposed to be here. It’s what I think, too, when I see someone decades younger than me with cancer. It’s a stupid vicious circle of cancer.

This is the appointment I was dreading: the oncologist. I just keep waiting for someone to say, “You’re all set. Bye!” I don’t want to hear anymore bad news. In fact, I don’t want to hear any news at all. But the oncologist laid out the plan: chemotherapy for 18 weeks (Taxotere & Carboplatin), and Herceptin for a year.

Chemo will be administered through a mediport that will be inserted in my chest in surgery. The port is a small disc, about the size of a quarter, and will sit just under my skin. A soft thin catheter tube connects the port to a large vein. Chemotherapy is administered directly into the port. Blood can be drawn through the port as well, which gets done before every appointment. It’ll be in for a year. Things like this fascinate me so I start googling all sorts of things; Who invented it? When did they start using it for chemo? What is it made of? Do they put it anywhere else in the body? Can your body reject it? What are the risks? What does it look like? Any reason to learn something new.

Each doctor I’ve seen always checks in with the same grave question, “Do you know why you’re here?” It’s like when you’re speeding and you get pulled over by a cop, “Do you know why I pulled you over?” Of course you want to act innocent and mystified as if you couldn’t have possibly been speeding, but what comes out is “Yeah, I was speeding.” The doctors want to know that we’re ready, ready for words like cancer, mastectomy, chemotherapy, hair loss. I think I a lot of patients probably go into appointments with false hopes, not grasping the gravity of their diagnosis. A lot of patients simply haven’t asked questions about the details and their doctors have to carefully navigate through some big emotions. I am a reader and a researcher, so when she asked me, “Do you know why you’re here?” I said “Yes, I have cancer, I’m going to get chemo, and all my hair is going to fall out.” She liked my answer; it’s one less thing for her to explain and more time to talk about treatment details. With the basics out of the way, we walked with her into the deep, dark depths of the cancer basement.