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.

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Living with cancer

The trauma of cancer does not go away.

I’ve talked about it before and time hasn’t change the deep feelings of grief that I have. Most of us have directly experienced a significant trauma or loss and most of us do the same thing: repeat the traumatic event over and over in our heads trying to make some sense out of it, trying to process it. I am still doing that. I am on repeat in my head, and out loud at times.

I’ve slowed down on writing because lately the same feelings keep bubbling up that I’ve already written about: loss, grief and sadness. I’ve had a body part amputated, lymph nodes removed, my insides fried, endured terrible side effects, and lost my hair. I am a different person physically and emotioanlly than I was three months ago. I have to figure out how to live with this for the rest of my life.

I don’t really want to dwell on my dark thoughts, but I don’t want to hold on to them either. Letting go of them is extremely hard. There are too many “what ifs” to wrap my mind around.

Lately I keep thinking of the future, and what I need to get done to ensure Amelia’s future if I’m not here, if I die from cancer. HER2+ breast cancer is notorious for recurring years down the road in places like your brain, bones, and liver. My dark thoughts tell me it’s not a matter of if, it’s a matter of when, so I need to finish this building, open the business, build another teardrop trailer, re-do the bathroom. The fact is, I could be with Amelia for another 100 years and it still wouldn’t be enough time. She is what grounds me to this world.

I have paranoid moments when a flash of light catches my eye or my vision gets foggy and I think, It’s in my brain. An ache in my right side, It’s in my liver. A creak in my bonesIt’s in my spine. 

There are no reassurances about anyone’s future, but even more so with cancer. When people say, “You’ll beat this,” they are reassuring themselves, not me. Though nothing is written in stone, I got a glimpse at what my death could look like. I could be going through all of this just to die. And I need to figure out how to live with that.

 

Cancer and Star Wars

Social media has done a good job at connecting people who may otherwise never know each other. It also has the potential to really screw things up. It’s amazing the shitty things people can just pound out on the keyboard that they would never, ever say to a friend – or stranger – face to face. Most people would never go up and yell at a stranger, but somehow people feel like it’s ok to do so behind the safety of their little computer. Don’t be too proud about the technological terror you’ve created. -Darth Vader

It is so common to see people get bashed and hated on by something that excites them and makes them happy. Take Star Wars, for example. I will go see The Force Awakens and for two hours and sixteen minutes I will not think about my cancer. It will be a wonderful escape. Amelia will be happy. But people have to mock the movie and its fans on Facebook for some reason. I’ve got a bad feeling about this. -Han Solo 

I admit it, I have been a basher before. Harry Potter? Twilight? Role playing games in the woods with make believe magic powers? Yeah, I’ve made fun of all of that. I have bashed their joy. I was wrong. Your feeble skills are no match for the power of the Dark Side. -Emperor Palpatine

What does this have to do with cancer? Nothing. And everything. Life is short, and cancer magnifies that fact. Luminous beings are we, not this crude matter. -Yoda

Having cancer has made me a more compassionate person. I know I have to actively work on my outlook and judgement of others. It’s not enough to not speak it; I need to change what I think. I need to practice it. These aren’t the droids you’re looking for. – Obi Wan

My final thought: Don’t wait until you have cancer or some other negative life-altering event to have more compassion and actively work on your judgement of others. Do, or do not. There is no try.  -Yoda

And yeah, I kinda like Stars Wars.

Light Saber

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.

 

 

 

Losing my sh*t in the grocery store

By Amelia

I feel like it’s my job to try to stay chipper and maintain a sense of normalcy in the shadow of Leah’s cancer. I can’t say I do a good job at either of those, but I am functional. That is, I am functional until I walk into a store.

I lose my sh*t every time I go shopping. Every. Single. Time. I’ve cried in the baking aisle at Wegmans, covered my face with my hands in the bulk section at the Green Star Coop, blubbered amidst the vegetables in the Trumansburg Shur Save, and wept openly by the shower curtains at Target.

The first time it happened was right after Leah’s diagnosis. Her 48th birthday was only a few days away, and I wanted to buy her some slippers. As I walked past the women’s clothing in Target, I saw some nice pajamas that buttoned up the front and I thought, Leah won’t able to pull a shirt over her head after her surgery. Oh my god – she has cancer. I struggled to hold back the tears. I then realized Leah would need a bathrobe since she might not be wearing street clothes for a while; my eyes started to well over as I chose a dark grey one. I pictured her in bed, weak and in pain, propped up by pillows, so I also grabbed one of those body support pillows (ironically called ‘husbands’) for her to lean back on, then stopped to wipe my eyes. As I piled each gift into my arms  – I hadn’t thought to take a shopping cart on the way in –  I realized that I wasn’t birthday shopping, I was Cancer Shopping. By the time I remembered the slippers I’d come in for, I was sobbing and dragging my Cancer Shopping purchases to the register like Steve Martin in The Jerk. (All I needs is this ashtray. And this paddleball game. And this lamp.  And this thermos. And this chair.)

Now it happens every time. Every shopping list is loaded: Zantac for Leah’s stomach, vegetables to sneak into her chicken broth, bottled water because they are working on our water main again. Paint from Lowes for the kitchen at the new building? I worry that we’ll never open the new restaurant. Batteries for the lights in the gingerbread house that I entered in a contest? Leah won’t be able to go to the reception if she has neutropenia. Warm hats? Cancer. Sorbet? Cancer. Christmas cards? Cancer.

Leah keeps asking me exactly why I fall apart in stores. It’s a hard question to answer. There is something about walking into a normal place filled with normal people doing normal stuff that shines a spotlight on the cancer and how fucked up this whole thing is. Sometimes they are talking and laughing like everything is fine. Sometimes they are yelling at their kids for something unimportant. Sometimes they are oblivious and they block the whole damn aisle while they stare at the peanut butter for way too long.

I don’t remember what normal feels like. I buy extra Kleenex, and raspberry juice for Leah because she says she can taste it even after chemo. I hope cancer never feels normal.

 

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.

Wound healing with neutropenia and lymphedema

I don’t sit much. I am standing right now as I type at our counter-height kitchen table. I’m at my best and most comfortable when I’m in motion, but usually I need some caution signs around me because I’m wielding some sharp, high-powered tool.

I am not a typical woman. I build things. I operate power tools every day. I use hand tools every day. I handle very, very sharp objects every day. I move rough cut wooden boards every day. I lift heavy objects more than I should every day. There are plenty of opportunities for bumps, scrapes, cuts, splinters, bruises, punctures, and pinches.

A while back I wrote about the warning sign that now comes with my left arm. With ten lymph nodes removed there are less pathways for fluid to drain which means when I injure myself there’s a greater risk of swelling (lymphedema). I’m not ever supposed to injure my left arm. Not ever. Not good for someone like me.

Last week I scraped my left index finger with a blunt star-shaped screw bit while I was driving a screw into drywall. It was a very minor injury, but  I was alarmed to see that for the next four days my finger was extremely red and unusually swollen. Amelia fretted about the threat of infection. I soaked it in salt water every day and used a prescription anti-bacterial cream. A week later the swelling was down, but it was still bright red and wasn’t even close to healed. That’s because I am still neutropenic from the toxic effects of the chemotherapy. Right now I have zero neutrophils, which are a type of blood cell you need to heal wounds and fight off infection.

I knew lymphedema and poor healing were possibilities, but this was a double whammy and another step into the new normal. Every time some new bad thing happens, I’m surprised. I have to somehow not get even a small scrape right now, not just on my left arm, but my whole body. Neutropenia might be temporary, but lymphedema is a life-long risk.

Not working is not an option for me right now – for so many reasons. But I have to figure out how to reduce my risk of injury.  My first step will be trying to find a pair of women’s tight-fitting gloves that allow for dexterity and range of motion while protecting my hands. Then maybe some lightweight, high tech body armor. I wonder if they come with packs….

JetsonsFly

 

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.