Chapter 7: The ROC
My second round of chemo was at the Regional Oncology Center; better known as the ROC (pronounced “ROCK” and preferably in a Sean Connery-esque Scottish draw). The ROC is a bastion of brilliant nurses housed in a horrible bunker of a building. It literally lies underneath the construction of a brand new (no doubt gleaming) cancer center. To get to the ROC you walk into the main entrance of the hospital. You go through the lobby, turn right past admissions and down a long hallway past the pharmacy. Then you take a left to the Green Elevators. Take the elevator to the basement then follow the green light rope down a very, very, very long hallway. At the end of the hallway turn right to another elevator. Take the elevator to the first floor and you are at the entrance of the ROC. Now imagine doing this with half your normal red blood cells.
Once you are at the ROC you wait. First you wait in the exterior waiting room to get your blood drawn. Then you wait again in the exterior waiting room until they are ready to take your vitals (weight, blood pressure, temperature). Then you wait in a small examination room for the oncology fellow to talk to you. Then you wait for your oncologist to come and examine you. Then you wait for an available treatment cubby (three walls, a curtain, a heated chair, and a TV hanging from the ceiling). Then you wait for two nurses to be available (one to hang the chemo, the second to check it). Then you wait for the pharmacy to mix up your poisons. Then you sit being poisoned for 5 hours. Then you get to go home. The first Friday I went to the ROC was an unusually busy day. I got there at 9 a.m. for a 4-hour infusion. I left as the ROC closed at 5:30.
The highlight of my first outpatient treatment was that I got to meet my oncologist. It turns out it was Dr. B. This was a bit of a surprise as this was our first meeting. He had been the admitting doctor all those weeks ago in the ER. It didn’t matter that I had been working for weeks with another oncologist in the hospital; Dr. B was now in charge.
Dr. B informed me that with my advanced stage cancer (stage 3 I finally found out months later when I requested a copy of my medical records) he was planning on doing 6 to 8 cycles of ABVD. After 2 cycles I would have a PET scan to see how the cancer was responding. I also had to come in every week to have my blood drawn.
Now I have to stop here to explain something that took me a while to get a handle on. Oncology folks talk about chemo not in days and weeks, but in cycles. For ABVD a cycle consisted of 1 infusion (sitting in the chair for 4 hours) of the ABVD cocktail followed two weeks later by another infusion, followed by two weeks of sitting around waiting for the next cycle to start. So each cycle is roughly a month. Clear? Then let us proceed.
Truth be told, the first two infusions (the first cycle) were a breeze. Far from dealing with side effects, I actually felt like I had more energy than normal. I was putting in 18 and 20-hour days. I finished up my class. I started voluntarily offering a new online course for 2,300 people. I was up until three in the morning wide-awake. They say that insomnia is a side effect of chemo, but normally insomnia is a sort of desperation to sleep. This insomnia was full of energy.
It turns out two things were going on. The first was that I was still on high-dose steroids for my low platelet count (that was no longer low). I was also receiving additional steroids as part of the actual chemo infusion. While my six-pack abs never showed up, the steroids were giving me the energy of a Major League Baseball player…you know without the multimillion-dollar contract. Turns out corticosteroids that suppress your immune system are very different from the synthetic testosterone used to build muscles.
My Wife is Xena the Patient Advocate
I mentioned before how much I love my wife. I should also mention that I am also in awe of her. Having seen my wife give birth to my two sons, I am convinced that women could rule the world, they simply let the men play their games. Having seen my wife in action as both my caregiver and advocate, I know women do in fact run the world.
My wife was with me all through the undiagnosed weirdness. My wife was with me every day in the hospital. My wife has been to every appointment with every oncologist I have had. She is not simply there as moral support, or as a helpful ear. She is there as my caregiver and patient advocate.
She doesn’t let the doctor go until all our questions are answered. She is there to make sure no new prescriptions are added until they have been checked against what I am already on. It was my wife, Anna Maria, who asked, “If his platelets are back to normal, does he still need to be on steroids?” As I am writing these words, I am referring back to the notes she kept throughout this. I may be the boring patient, but she is the force that ensures I am never the underserved patient.
What reassuring message can I give to all the caregivers out there? Holy crap you are screwed. I’m sorry, but my wife has been single mother, chauffeur, nurse, bully, cheerleader, dishwasher, cook, accountant, and all of that was just in the first week of treatment. No one wants to bother me, so everyone calls my wife to get an update. This then leads to one of the more unexpected parts of being diagnosed with cancer…Anna Maria and I end up consoling everyone about my illness.
“Hello Anna Maria…how are you doing?”
“I’m pretty tired. I feel like I’ve been in the car all day driving everyone around.”
“That must be tough. How’s David?”
“He’s having a rough day today.”
“It’s just not fair. He’s so young, and you have the kids, and you guys are so nice,” followed by sobs.
“It’s OK, David’s going to be OK. We’re staying very positive.”
“I just don’t understand why you have to go through this.” More sobs.
“I know he’s going to be fine…in fact I think I can see the cancer shrinking as we speak.”
It can get pretty ridiculous. I was once yelled at by a colleague because I hadn’t done enough to let people know how to help me. On one hand, that’s kind of sweet. On the other hand: wait, is that my job?! I had a very good student that I spent the first two minutes of a scheduled advising call consoling. My wife finally just let folks know that she would be glad to talk, but if she’s not up to it, she’s just not going to answer the phone.
Let me just get a few things out of the way:
It is not fair that I got cancer. It is also not unfair that I got cancer. If you try to justify cancer or try to seek some deeper meaning in cancer, you end up chasing your tail forever. Does God hate me? Am I being tested? Why me? Cancer is a mutation, a mistake in DNA. Cancer doesn’t hate me. Cancer does not judge me. Cancer seeks to do one thing, and one thing alone: grow. Don’t ascribe any more power to the enemy than is absolutely necessary.
Anna Maria made it very clear to me at the beginning of my treatment, that I too have one job – kill it. She’ll take care of whatever else needs to be taken care of. And she has been able to draw on an incredible network of family and friends to do just that.
Look, there are whole books written by and about caregivers. I am in no position to say anything other than thank you to my advocate and love. I have said it before, and I will say it again: there is no joy in cancer save the network of love it exposes.
Ninja with an X-Ray
Through the first few infusions I was still using the PICC line they had installed in the hospital (I know there is a better word than installed, but as I’ve said, sometimes I get treated like a car). Every morning my wife would don latex gloves and keep the lines flushed with saline and heparin syringes. Every night I would tuck the two plastic tubes hanging out of my upper arm into an elastic bandage before I went to sleep. Don’t get me wrong, this was much better than having to go every week and have a needle thrust into my arm in search of a vein. However, a PICC line is considered temporary and needed to come out.
As I was going to be in treatment for a long time, the longer-term solution to a PICC is called a port. A port sits under the skin in your chest. It is a set of dome-like membranes that the needles can pierce. These domes (I have a dual lumen port…meaning two domes so they could hook up two IVs if they needed to) are connected to tubes that run up to your neck, then into a large vein and back down to just outside the heart.
I know that can sound uncomfortable, but you really don’t know it is there. I actually think everyone should have a port installed as a baby. Every time I would go to give blood pre-port it was an awkward scene of tourniquet, slapping my arm, and a frustrated phlebotomist. “There’s a good one,” stab. “Hmmm,” feel needle moving back and forth, “it was just there.” More moving. “Let’s try the other arm,” stab. “Let me go get someone else, I’m only allowed three sticks.”
With a port, the nurse (it has to be a nurse) feels the bumps on your chest, tells you to take a deep breath, and bingo, done. It is a godsend when you are in treatment. It just needs a USB connection so you could charge your phone on the go and it would be perfect.
Now to get your port installed is out-patient surgery. It is done by the medical department with by far the coolest name: interventional radiology. First, it is just cool to say. It also brings up images of doctors fighting crime with an MRI machine.
You go to the doctor’s office and get in a gown. Then you lay on a bed and they expose your chest, shave it, and douse it in sterilizer. Then they give you a shot of “I’m not so tense” juice. They then cover every other part of your body (including your face) with sterile blankets.
The doctor comes in and tells you “This is easy, I just need to make an incision in your chest and carve out a pocket for the port” (great, whittling as a medical treatment). “Then I’ll push the tube up your neck and we’ll be done.” It took maybe 5 minutes, I felt nothing but some odd pushing. The reason it was done at interventional radiology was that they guide the tubes up your chest and into your neck with real-time X-rays.
There is another reason I love interventional radiology (I’m going to just keep typing it out). I have been to three different procedures at interventional radiology and the folks there have always been hilarious. I’m not talking about nice, or simply a few jokes, but flat out hilarious. For my port procedure we ended up having a discussion of getting squirrels out of a shed by leaving tiny squirrel-sized condoms on the back porch. These are not completely normal folks, but still, I felt, my tribe. I just wish more physicians cutting into me shared their sense of humor.
With port in place and PICC line removed, the chemo and bloodletting at the ROC proceeded on with a new sense of routine. After I had finished two cycles (two months) of chemo, it was time for a PET scan…where they can’t use your port.
Positrons and Greedy Cells
The best tool that oncologists have to track the spread, and hopefully the retreat, of Hodgkin’s Lymphoma is the PET scan. PET stands for Positron Emission Tomography, and it is pretty damn cool. The basics are that you are given a radioactive tracer, normally glucose (sugar). Cells that divide rapidly need a lot of sugar to do their work. Cancer cells divide very rapidly, and therefore need a lot of sugar. So as the radioactive sugar goes coursing through your blood stream, the cancer cells (and your brain) gobble it up. Now all this time, this sugar, being radioactive, is decaying and throwing off positrons. Big PET scanners can pick up these positrons, and make a 3D model of your body showing anything that “lights up.” That will be your brain, your kidneys that are busy trying to filter your blood, and cancer cells.
Now, that’s the basics, but the practice is not as fun. First, your cells have to be hungry for sugar, and that means the day before your PET scan, no sugar. No anything that can quickly turn into sugar like carbohydrates. So pretty much, if you eat, eat protein. So I had fish for breakfast, turkey jerky to snack on, fish for lunch, and a nice piece of fish for dinner. Then nothing to eat or drink after midnight.
The next day you go to the imaging practice where they prick your finger and do a quick sugar test of your blood. Blood good? Great, time for the shot. The technician brings out the syringe with the radioactive glucose in a lead box. She opens the box to reveal a syringe encased in a thick titanium cylinder. “Wow,” I said.
“Oh, don’t worry. The metal is just there to protect me,” she said with not a hint of irony in her voice.
She then injects you with the glucose, and puts you in a quiet small room with a comfy chair. “Now, stay as still as you can for an hour. Anytime you use muscles, the muscles use sugar and it can throw off the scan.”
So, you are left alone in a dark room. You can’t move or you’ll throw off the scan that is going to show the doctor if your cancer is retreating or advancing. Tell me your nose wouldn’t start itching.
After the hour they have you pee, then lie on a flat plank. The plank moves you through an enormous donut like machine. First quickly (that is the CAT scan in about 30 seconds), then VERY slowly. The PET scan takes about 40 minutes to move you through the donut…still, for you? No moving!
It turns out my first PET scan was very encouraging. While there was no baseline PET scan to compare to, the lymph nodes and spleen were shrinking from the CAT scan I had in the hospital. There was much rejoicing in the Lankes household. The chemo appeared to be working. Which is a good thing. The bad thing is remember exactly how it was working. It was killing the cancer cells.
I remember Tweeting out how frustrating I found the chemo information sheets. They all had a heading to the effect of “What does this drug do?” They all said “Kills cancer cells.” My good friend Jill tweeted back “You would rather it tickle them?” Good point. However, the trick is that chemo doesn’t just kill cancer cells. Like that radioactive sugar from the PET scan, it kills rapidly dividing cells. And this leads to an increasing set of side effects.