Cancer: The Journey
First Steps
I can't say anything as brave as 'battling cancer' or 'fighting cancer.' I think that the best thing I can say is that I am enduring cancer. Pronounced to be in remission the last week of December, I understand that I am not cured. Instead, I have what I have chosen to call Schrodinger's Cancer - they don't know if it's there or not, but we are choosing to proceed as if it is until blood tests and imaging indicate otherwise. Even after five years, when they pronounce one to be 'cured' - there is always the chance of recurrence or a new type of cancer altogether. There will always be a sword hanging over my head, as my chemobuddies taught me.
I found out about my cancer by reading my discharge papers from a place I will call Asshat Central Hospital. They referred me to Asshat specialists who from my calls in the middle of February could not see me until the end of march, and in some cases as far out as May. I needed to see an oncologist and a urologist urgently. Over the next two weeks, I was stumbling and fumbling as I tried to get care out of my HMO network, two more visits to the ER got me a shot of morphine and a CT scan, another list of referals, and finally pain meds.
I woke up on the morning of March 3rd in so much pain that I thought I was going to die. I knew if I went back to Asshat Central, Dunno Medical Center, or Clowncar General that even with my PPO, that I would die. I got my ass in an Uber and over the hill to Cedars-Sinai. I was upstairs and in a bed in a matter of hours, I had painmeds and that first night I remember sleeping so deeply. I was safe and getting care. Within two days, all the care that was weeks or months out started rolling in. Colonoscopy. Nephrostomy and stent. MRI, CT, ultrasounds, x-rays. Cardiac, oncology, urology/nephrology, and all the ologies rolled through my room and them me all over the hospital - it hurt, was terrifying, and in the end the platform needed for care.
Killing the Cancer Instead of the Patient
On March 18th, I had a power pump installed in my left arm for drawing blood and administering chemo.
Five weeks of chemoradiation began shortly after. Radiation Monday through Friday, with a chemo pump Monday through Saturday, a Monday infusion of Emend, Kytril, and dexamethasone, followed by Wednesday and Saturday fluids with Kytril and dexamethasone. Here is what I will tell you about this phase and how to survive it.
This will knock you down so hard that you will not know which way is up. Radiotherapy and oncology like to point fingers. Fuck the fingerpointing. You will be so fatigued that sleeping 12 hours per day will be about all you can do.
You must stay hydrated and it's hard even with two hydration bags going in twice a week I ended up in the hospital with dehydration twice and a whopping kidney infection. Enterade is a drink that helps calm everything down after radiation and chemo and helps to limit the GI damage both can cause. Get Ultima drink powder, make up two gallons and put them in the fridge and pre-fill four one liter bottles - keep them next to you so that you can see them. When you wake up, down one.
Kiss your appetite good-bye. You still need to eat. I found that baby-food stayed down the best. Once upon a Farm is a good national brand, and so is Yumi. Kate Farms makes tasty nutritional shakes that don't give you explosive diarrhea.
I could not stomach meat or dairy, and managed to take only gummy vitamins and gummy pre/probiotic supplements. Spices hurt my mouth and throat and my stomach kicked them right back out.
My doctor prescribed Zofran sublingual, compazine, and Ativan - compazine in case the Zofran didn't work, Ativan when the nausea and vomiting was driven by anxiety. I spent a lot of time carrying around a one gallon ziplock - they came in handy. Saltines and plain soda water do help!
You'll have a break after chemoradiation - at least two weeks. Sleep.
About Power Ports
GET THAT PORT. INSIST ON THAT PORT. It will save you endless bullshit with collapsing veins later as chemo and radiation both make your veins brittle. Insist on anyone drawing blood or giving an infusion use that port. Get ready to call bullshit when they say that they can't. I had bruises up and down my arms until I told them to get someone to access the fucking port or I would damn well walk to Cedars if I had to.
Be aware of the increased risk of blood clots. Your arm may swell and that needs to be seen and treated right away, usually with a three-month course of Eliquis or other blood thinner. You could take aspirin as a preventative with your doctor's approval, but I'm allergic to that and other NSAIDS. Turmeric, ginger, black pepper, cinnamon, and cayenne all have blood-thinning properties, but I could not keep them down. Likewise, grapefruit juice or supplements can enhance (not in a good way) blood thinning medications.
About Nephrostomy Bags
They fucking suck. A nephrostomy should be reversed six to eight weeks after the surgery, and the stent in the ureter (not the urethra) takes over. You cart your piss bag everywhere, wake up to make sure it's not overflowing. You're at an increased risk for kidney infections. Here's my tips for living with the motherfucker.
Order only name-brand bags from Amazon. You'll want to change out the bag once per week. Keep the big bag for when you're at home, the little bag for when you have to go out. Coloplast, Bard, and Medline are all good to use. There are bag covers, bag carriers, and even clothing to keep your bag concealed, catch leaks, and stop punctures. You might want to tape your connections to prevent accidental decoupling. Also, insist on a home health nurse to change that dressing - the angle is such that you can't do it yourself.
Friends
You will make friends in radiation and infusion waiting rooms. You'll share space with them in infusion clinics. You may lose them. It will hurt. At the same time, you'll be happy and heartbroken. You'll share tips and tricks, highs and lows, and a fellowship that can't be described, only experienced.
