From where we left off:
I had consulted several doctors who encouraged me to get a particular type of treatment, which I was receiving at my local hospital. My radiation was finally over. I was supposed to start chemo, I knew that, but I could not get in touch with my hometown neuro oncologist. I was feeling like it was urgent to start chemo - the other doctors had alluded to the idea that one of the effective pieces of this treatment was to radiate first, and then, while the tumor was still raw from that, blast it with chemo.
I didn't want to go through the horrors of radiation for naught. I was burned, tired, uncomfortable, emotional, and left high and dry.
I don't exactly remember how things played out in the interim between radiation and chemo, but I know nearly two months passed between the two.
Cancer is hellish and so is the American healthcare system. No person should be as weak as I was, and feel completely responsible for ensuring that doctors remember their existence. My support system and my education/knowledge base were both critical for making certain my treatment continued.
At the very least, a care coordinator should be assigned to every cancer patient - a person who can liaise between doctor and patient, and help make sure the patient remembers their appointments, can get to pharmacies, can access financial resources, and who coordinates conversations between doctors. In the course of my treatment, in the calendar year 2015, I saw no fewer than ten doctors, and I'm fairly certain some of them never connected. That number does not include the innumerable nurses, technicians, phlebotomists, and office coordinators I interacted with more often than the MDs themselves.
Being sick and trying to get better requires a fuck ton of work, and 90% of the time, you are shooting in the dark, unsure of who to call or what to do next. And you feel like the trash rotting outside a crab shack on a hot summer day.
(Props to that team at the hour-away-hospital back in 2012 which assigned a person to hold my hand through the whole process).
OK. Back to it.
I was advised by my favorite neuro-oncologist-three-hours-away to get radiation followed by a few courses of PCV (the initials given to the three chemotherapies: Procarbazine, Lomustine - also called CCNU for some unfathomable reason, fucking brain cancer nothing about it is easy - and Vincristin). This was the course of treatment given to participants in those groundbreaking, long term studies.
If you will remember, the doctor at NIH agreed, this is a good course of action. He also suggested that it would be possible to remove the V from the triad of chemos. Other studies have since indicated that Vincristin isn't very good at penetrating the blood brain barrier. Was it helpful or necessary for the other chemos to be effective? We don't know!
And we will never know. Science moves quickly these days, research that is currently being conducted isn't even looking at radiation or chemotherapy at all. No scientist is going to revert and duplicate a long term study without one component. Things are moving all around us, and patients are left to determine what is best for them in a world crammed with completely foreign knowledge that is already outdated as soon as they are confronted with it. We are left with difficult choices with no real opportunity to change our minds.
Anyway, I opted to do the PCV without the V. Even though PC had not been studied alone, the idea that the V might have been superfluous made me decide to go without. My fingers are still crossed that I made an OK decision.
Before I continue my chemo horror story, I need to do some explaining to help readers understand one of the more unique traumas of brain cancer: you take the chemo yourself.
What people think that means:
1) wow, how convenient! You don't need to go to the hospital to be hooked up to a machine all day
2) that chemo must not be so bad. After all, you can take it at home, not in a hospital.
In reality, the chemo is absolutely awful, and taking it at home adds insult to injury. Allow me to explain:
1) The reason people go to the hospital to receive chemo intravenously is because most chemo drugs cannot penetrate the body's stomach lining. It must be administered via a vein, otherwise the body won't absorb it. Chemo drugs for stomach cancer and brain cancer are specially designed to penetrate the stomach lining (and blood brain barrier). This means that everyone would take a chemo pill if it was possible, not that chemos in pill form are easier or safer or weaker.
2) My insurance had a separate deductible for prescriptions than it does for hospital visits. This is common. I had already reached my maximum out of pocket for the hospital that year due to radiation, doctors’ appointments, labs. Everything administered in a hospital was free to me. But I had to take the chemo at home, purchased from a pharmacy, an extra $2,000ish. I could pay it, fortunately, because of my disability insurance, but I was reeling at the copay at the pharmacy the first day.
3) You are alone. As I said before, there was some comfort in seeing the same radiology techs every day. You knew that someone was there if something went wrong. And you saw the awesome doctor weekly, just to make sure you were doing alright. Similarly, there are nurses bustling around you for intravenous chemos. But for this DIY chemo hell scenario, you take a poison pill at night - a pill that is in a bottle labeled with a skull and crossbones urging you to wear gloves when placing it on the back of your tongue - and hope for the best.
4) No one knows you from Adam when you turn up with problems, like needing a blood transfusion
5) You have to crawl through the weeds and the tripled bureaucracies of the American healthcare system because not one pharmacy exists that is prepared for you
Onward. I eventually saw the local neuro oncologist overseeing my treatment (radiation plus PCV minus V). He explained the schedule to me: I would do five to six cycles of chemo, each cycle lasting six weeks. Why five or six cycles? Shouldn't medicine be more precise than that? Well, doctors give you as much as your body can tolerate. When your bloodwork starts coming back looking really weird, they call it. They were aiming for six cycles but understood I might only be able to tolerate five.
What was a cycle?
- Day 1: one Lomustine pill. Two weeks off.
- Days 14 - 28: a Procarbazine pill every night.
- Two weeks off.
That was it. That was six weeks.
He then went through a booklet of known side effects. There were acute side effects one has been trained by Hollywood to anticipate, like vomiting, and others that were a little more distant and nebulous like "early menopause" and "blood cancer." I signed.
I signed that I understood that I had to avoid a long list of foods and medicines while taking Procarbazine (and for the two weeks after I stopped taking it). Foods like soy, raspberries, avocados, yeast, alcohol, caffeine, anything super ripe like bananas with brown spots, anything aged like beef and hard cheese.
I signed that I understood that chemo would damage my blood, that I would need to get blood drawn weekly to ensure that I had enough red blood cells, white blood cells, and platelets. The chemo targets dividing cells, you see, and the blood has a lot of those.
Aside: This is why people's hair falls out when taking chemo (growing hair = cells dividing faster than most other healthy cells). Interestingly, for whatever reason, these chemo drugs (PCV) don’t cause hair loss.
I signed that I understood that, like radiation, the effects of chemo would be cumulative. My energy, my bloodwork, my strength would progressively worsen with time.
Then I was scheduled to start on Monday night. The doctor wrote the scripts, handed me a printout describing when side effects are call-the-doctor-worthy, and sent me on my merry way.
Cue me standing in line at the busy hospital pharmacy for two hours, deli ticket in hand, still dizzy with weakness from radiation. An armed security guard stood supervising this teeming, sick, impatient crowd. TVs were on in the small room. Babies cried, people slept in their wheelchairs, whole families waited in solidarity - or out of need - for their number to be called, visibly worried. It was growing later in the afternoon, and growing increasingly stressful in the room. People were digging candy out of their bags to eat, starting to ask the security guard about moving up in line - they had a bus to catch, a family to feed. A man in construction boots "just had a question" for the pharmacists - he didn't even need anything to be filled - but he had to wait his turn.
Though I was weak and felt unstable and precarious, I stood the whole time. Most seats were taken. There were a few empty spaces but they were next to people whose illnesses you could see, hear, or smell, individuals who had especially wet, expressive coughing fits.
My number was finally called. I told the pharmacist my name, showed him my ID. There were problems - a phone call. I was at the wrong pharmacy.
I had gone to the indigent care pharmacy, the oncology pharmacy was about two blocks away and scheduled to close in 15 minutes. Luckily I made it in time.
Though it certainly wasn't sunny, comfortable, or uplifting, the oncology pharmacy was better than the indigent care pharmacy. It wasn't packed, it was quiet, it had some tattered Golf magazines, probably brought in by a well intentioned doctor. There were no employees yielding guns, at least not in sight.
1) Why our country would put people through the horrors of places like the indigent care pharmacy I will never understand. I know this hospital has money. They have tables loaded with branded chapstick, pens, and coozies at every local event I have ever been to. They have billboards. They have a huge shiny new research building around the corner from the indigent care pharmacy. The practically-empty-two-story-sunny-atrium of this research building has a footprint larger than the entirety of this pharmacy.
This is a public hospital! I am ALL ABOUT research, but put some money into a nicer space for impoverished, sick people. I bet you wouldn't need as much security if people were a little more comfortable.
2) Doctors and hospital staff, I'm sure the hospital was a confusing network of buildings and hallways during your first several weeks of work. There is not much you can do for suffering patients, so please, please don't assume patients know what is going on. The next time I get chemo, I will know that there is a special pharmacy. I can help friends and family members find this hidden gem in the future. But assume I know nothing. Recently radiated, weak, and stressed for time is not when I want to learn via trial and error. (Better yet, give me that hand holding coordinator I mentioned above).
Anyway, I signed away my life, paid an outrageous sum, and triumphantly walked away with a paper bag full of chemo drugs.
This was to be my first night of chemo. The doctors all suggested that I take it at night so I could sleep through the worst acute side effects. Though I was not happy about chemo, I was anxious to start so I could get it behind me.
I ate early. An empty stomach would lessen nausea, according to the doctors. I took my anti nausea drug two hours after I ate. I waited another hour to allow time for the antinausea drug to start working (exactly as I was told to do). Then I choked down my prescribed Lomustine pills with water in front of the bathroom mirror.
I followed every instruction to the letter. I did not want to mess this up. The bottle warned to wear gloves when handling the pills or at least wash hands thoroughly after touching them. This was serious stuff.
I climbed into bed and went to sleep. I woke up a few hours later, ran to the bathroom, and puked my guts up.
I spent the night on the floor outside the bathroom, getting up regularly to wretch violently over the toilet. I tried to keep count of how many times I got up. Seventeen. Of course at that high number, there is the real possibility that it was actually fifteen or eighteen times, I could have miscounted. There was nothing in my stomach - bile and all was gone after about six trips - but my body was painfully twisted into some sort of excruciating, tearful, exorcist exercise on those final eleven or so trips to the bathroom. The body is incredible! It is astounding that my stomach was still in place after that night, that it hadn’t reverse prolapsed out of my mouth. Believe me, it tried.
I felt OK the next day - like I had been up all night puking - but not like my blood was on fire or anything weird like that. I went to my parents' and mom fed me. I ate well.
But I was worried about how sick I had been- that print out said to call the doctor if you puked more than six times in four hours (or four times in six hours). We called and left a worried message in the morning. Several days later, the nurse practitioner called back, saying "I'm so sorry you got sick, we will try to find something else for you to take for nausea next time."
My mom was pissed by how dismissive the message was. Plus, then the onus was back on me to call them back to try to schedule a time to meet/get a new prescription and they clearly weren’t responsive or concerned. Mom found me a new doctor.
The newest doctor was an oncologist at the same hospital. She was my mom's friend's doctor and we had heard a lot of good things about her. She was able to squeeze me in for an appointment at the 11th hour: the day I was to start the Procarbazine.
Though this doctor didn’t specialize in brain cancers, she was extremely helpful and could relay questions through the hospital’s messaging system. I guess doctors are more responsive to other doctors than to patients. Her solution was the same as my original team’s, but her words and demeanor made all the difference in the world. She said something along the lines of “I’m so sorry you were so sick! Chemo is awful but there is NO reason you should ever be that sick. The good news is that there are a ton of medications available. We will find the right one for you.”
She had to read up on what I wasn’t allowed to take with Procarbazine, that fickle beast interacts with medicine as well as food, but I left her office with a script in hand.
This led to the vaguely-familiar-yet fresh-hell of trying to find Emend - an antiemetic - at a local pharmacy. It didn’t exist. No one carried it. Mom drove me to a locally owned pharmacy that the doctor said to try. No luck. She drove me to my daily Walgreens and we waited as they called around to their stores. They finally sent me to one way across town - a long drive made worse by 5:00 traffic. This Walgreens was apparently known to keep more diverse drugs in stock because of its proximity to a hospital. They had my drug, but only two doses of it, and couldn’t fill my order completely. They gave me the two precious pills and an IOU. It’d take a few days for the remainder to come in.
Procarbazine, as I mentioned above, seems to interact with everything. I had asked what that meant when I was going through potential side effects with the local neuro oncologist - would the drug be less effective, would it become poisonous, would it make my teeth fall out? He replied that it would be like drinking while taking antabuse - lots of vomiting.
So I avoided all foods on the “prohibited” and “consume with caution” lists. I do not like vomiting, I do not like being sick, so I cannot tell you from experience what would happen if one were to eat a Chik-fil-a sandwich, pickles, raisins, or sourdough bread.
While actively taking Procarbazine - and for the two weeks after stopping the drug - I subsisted mostly on sweet potato chips, animal crackers, ginger ale, and bland chicken. (You have to watch out for the sauces). It may be that I’m a great patient, or it may be my debilitating anxiety disorder, but I followed the rules exactly.
Again, I was to take the pill on an empty stomach, an hour after taking the Emend. Again, I was not supposed to touch the pill with my bare skin (or at least scrub thoroughly if I did). Words cannot describe the horrific chemical smell of the pills. My lizard brain was screaming NO and my logical brain was saying “it’s for our own good.” Choking down those pills only became harder as the months went by.
I still puked in the middle of the night, though only a handful of times, I was very pleased with the Emend.
I repeated this every night for 14 nights. This is horrible. My industrialized office brain thought “fourteen nights, that’s two weeks.” Two weeks sounds reasonable. But two weeks usually has some breaks in there. Fourteen straight nights is rough. Think Monday through two weekends.
Interestingly (to me): Your body feels worse throughout this time period - you are steadily being poisoned, you are eating poorly, you are weak. But your body acclimates to taking the chemo so that the nights become easier. On night one, I puked maybe four times, and by night five I didn’t get up to puke at all (though nausea persisted day and night).
Of course, then the cycle began again.
Though I talk about chemo like it was a nightmare (it was), there were stretches of reprieve and even boredom. I walked around the neighborhood, rented movies, wrote some of the bits seen scattered throughout this site. I went to physical therapy. My boyfriend and I had to move - some rich couple bought the house that included our miniscule apartment - and we were given a month’s notice.
I wrote a scathing letter saying that was illegal and was granted the extra two weeks. I organized my EOBs, got the next door neighbor’s wifi password, sat close to the window on his side of the house, and searched for affordable apartments (they don’t exist anymore).
I felt horrible enough that I was unable to work and unable to focus well, but good enough that within six weeks I could write a letter and pack a 500 sq. foot apartment.
Every Monday, I had blood drawn to ensure that my white blood cell, red blood cell, and platelet counts were ok. They dipped and rebounded throughout the chemo cycles, though never rebounding quite as high as they started.
Every cycle created a new prescription crisis. Of course I had to go downtown to pick up the chemo, but then I had to go out into the wild to track down Emend. The problem was that it comes in 10 packs, and no pharmacy wants to have extra of it and my insurance didn’t want to pay a cent more than it had to. One pharmacist at a hospital wound up being my go-to guy by my third or fourth cycle. (No, of course not a hospital where I was a patient, that would be so easy).
I spent months doing this. I don’t have many memories of this time. Besides that move in the beginning, I did very little. I shuffled around, weak, puking sometimes, avoiding a lot of foods, ravenously hungry at times. I still wasn’t reading books, my attention span had not exactly recovered from surgery (and now radiation). I wasn’t working on any projects. I went to appointments, had my blood drawn. Cooked when I had energy.
I finished my fourth round of chemo on the last day of October 2015. When I had my blood drawn on Monday, November 9, as I did every Monday, my platelets were low. They had been low before, but quickly bounced back up. This time, we saw that they had been declining over several weeks and were continuing to decline. They were alarmingly low and I had to have a platelet transfusion.
Platelets are necessary for blood clotting. When my platelets were low, my doctors warned me to be very cautious doing, well, everything. They even told me not to shave as even a little nick could cause me to bleed out like a royal hemophiliac.
I had always pictured transfusions as being something akin to dialysis. It’s that “trans” prefix - it tickles my imagination (or rather my logic). I thought that the bad blood was pumped out and good blood pumped in.
It’s really not that big a deal. If I could rename it, I’d call it infusion. I sat in a chair, lovely volunteers brought cookies and the other good snacks that I wasn’t allowed to eat quite yet. A bag of other people’s blood was plugged into my vein, and my body supped it up (it took a few hours).
THANK YOU BLOOD DONORS
Then I went home and returned to get blood drawn again the following day (or maybe two days later). Did the transfusion take? Are my numbers OK? My platelet count was higher, but still critically low. I went back after two more days. My platelets were not rising, rather the chemo was attacking the new platelets and I got another transfusion (this time I could eat the cookies!).
This continued over the next few weeks.
Here are the numbers for y’all medical folk:
During the month of November 2015, my red blood cell count and white blood cell count both tanked as well (though each number bottomed out on a different day). They rose and fell in the red, just like my platelets had.
The record lows:
On November 18, my RBC was at a low of 1.80 10e12/L.
Nine days later, on November 27, my WBC was critically low at .8 10e9/L.
I had some shots to raise my white blood cell count and blood transfusions to pump up those red blood cells. In all, I had six blood transfusions in November 2015.
In December my local neuro oncologist was ready to start round 5. My platelet count was back up. He and the auxiliary oncologist seemed a little rattled, however, by how low my lows had gotten.
Remember that chemo is cumulative - round two will hit harder than round one and so on. It becomes more difficult for your body and blood to bounce back as treatment progresses. They were both apprehensive that I’d have a worse response in round five than I did in round four. It was almost five weeks before my numbers had rebounded, with the help of shots and transfusions, not the two weeks that were built into the plan.
My mom, of course, was worried (and a little pissed - there had been quite a few things that made her question the local hospital, like not being able to get my prescriptions or get a doctor on the line). I hadn’t been to the three-hour-away hospital since before I started treatment, almost exactly a year prior, and she wanted to run everything by our favorite neuro oncologist.
In December 2015, he examined my scarred, naked, burned scalp with compassion. He asked about the treatment and was surprised that my blood work had turned so bad after four rounds. He had hoped to get in five or six rounds but based on my bloodwork didn’t think I could handle any more.
He asked about the doses prescribed and explained that the MDs determine the amount of chemo you receive based on your weight. Of course, pharmaceutical companies are not creating unique pills just for you. The pills come in standard sizes and my prescribing physician rounded up.
One super interesting fact:
My local neuro oncologist also worked in pediatrics. I think of kids as being small and vulnerable, but apparently their bodies can handle a lot more chemo than adults (and therefore need to be treated with a lot more chemo than adults). I think that my dosing doctor was generous with the chemo for this reason.
My parents and I left this appointment happy with the decision to stop: the doctor thought that I had ingested enough chemo and suggested that the risks of a fifth round might outweigh the benefits.
I still live with the quiet fears that I didn’t do the correct treatment, or enough of it, or in the right order, or with the right timing, or that the Vincristin could have been helpful.
I still live with issues caused by treatment - my brain is a little frazzled, I have more attention problems, I am tired and weak. Everything I do takes a lot of energy and effort. I have more murky days, days when I feel really heavy and sluggish, even more so than usual, that seem to come out of nowhere. Naps have become non negotiable. I don’t take them daily, but I have had bad weeks where I take them almost daily.
These naps are not what most adults think of as napping. These naps are imperative, they cannot be staved off with coffee. When I awake from one of these naps, it can be difficult remembering my awake hours preceding the nap.
I was thrown into early onset menopause at the age of 33. I worry about getting blood cancer from latent effects of chemo. I worry about secondary tumors from radiation. I worry about getting skin cancer on my shiny, permanent bald spot - the radiation burn there might make that spot more susceptible to melanoma.
But my hellacious year of treatment was over and I was going home.