Chapter 9: HemOc
My wife/advocate/caregiver/warrior princess never really liked the ROC. It was crowded, there was a lot of waiting, and she didn’t find the visits with the doctors terribly helpful. We were both frustrated with the straight-to-the-emergency-room policy as well. She wanted a change.
Perhaps the final straw came during a visit with yet another oncology fellow. As always, my visit had started with blood work. The fellow noted that my red cells were low and was wondering why. He looked at me with a very serious face and asked, “Are you bleeding?”
Now there is an obvious answer to this question. You do a quick visual inspection of your hands, feel your butt where your last bleed was, and respond “I don’t think so.” Mind you, it does take a bit of restraint to not say something to the effect of “Oh that’s what that red stuff was flowing out of my nose,” or “You caught me, I was hoping to hide it until next week,” or even “Doctor, I don’t want to tell you your job, but as a girl matures into a woman…”
For my wife, this was the end. These medical fellows that came in seemed not only tentative, but downright unconfident. Either that, or they were like the Bringer of Doom, and unaffected by humanity. After our experience with the mystery illness and seeing the power of a second opinion from a world-class medical facility, Anna Maria knew it was time for a second opinion in my case.
She then did what she does best, she researched the topic. We had known plenty of people with cancer, so she asked them where they went. She went online. She read doctors’ bios, she put my little librarian brain to shame. “We are going to Dr. C at HemOc.” HemOc is a pseudonym for the book. I could have used Cancer R Us or the ChemoOutlet, but then I might lose credibility. “Dr. C specializes in Hodgkin’s, and his father even died from the disease.”
Now, moving to another oncology practice seems like it would be easy, but it turns out that three things have to happen to get a second opinion:
- You need a referral from your current doctor (“Hi, while you are busy injecting toxins in me, I’d like you to send me to someone who I’m pretty sure knows better than you”).
- You have to get permission from your insurance
- You have to get the permission of the doctor you are being referred to.
It turns out while the first was awkward for me, it is business as usual and no real problem.
You would think the second step might be troublesome. After all it is almost an American pastime to complain about health insurance and coverage. I’m lucky, I have really good health insurance. Not only did they cover everything I had been going through, they even assigned me my own case manager to help me through the process. In my story, my health insurance is a hero. So item #2 was no problem.
Item 3? Ah, there was the process. Turns out you have to request a referral. Luckily I had seen someone in the practice years earlier for, ironically enough, enlarged lymph nodes found in my abdomen after a kidney stone (at the time insurance didn’t see justification for a PET scan so it was deemed probably nothing). So I could come in and see that doctor. “I would like to see Dr. C.”
“We can put in a request to have you transferred to Dr. C, but he and your current assigned doctor will have to agree.” They both did and I finally had an appointment. It turns out the appointment was something of an amazing thing for me. Dr. C looked over all my medical records, examined me, and then spent an hour talking with me about my case, chemo, even his dad. Was ABVD the standard treatment? Yes. Would he continue ABVD for the full 6 to 8 cycles? All evidence says that if the cancer is not gone after 6 cycles, it is not going away. If I got sick during a weekday would I be sent to an emergency room? No, Dr. C or a nurse practitioner would see me if it seemed non-urgent.
I was sold. I switched oncologists, and three weeks later showed up at HemOc to begin my third cycle of ABVD. It was different. First it was much more efficient. No sitting around to see the doctor for a routine infusion. So blood work and then right into infusion.
At the ROC infusion cubbies and everything seemed claustrophobic and separated. At HemOc you were in a wide-open room during infusion. You had your own TV but otherwise could say hi to your fellow patients and look out the windows. There was MUCH less waiting. One appointment they had live classical music played in the waiting room. I could park right outside the office. It was simply more pleasant.
Of course an open environment for transfusion can at times be awkward. For example, I requested to talk to a nutritionist on probiotics. That is an easy conversation. However, when you have to begin adding details about Irritable Bowel Syndrome and constipation, you kind of long for the cubbies.
Also, while it was clear that my progress was being monitored by the doctor, sometimes I missed actually seeing him. For example, the nurse told me that this infusion would be shorter because they were stopping the Bleomycin (the lung eater). My lung capacity was declining, and to stop the decline, you stop the Bleo. But don’t I need it? “Most people don’t make it all the way through. You made it halfway, that’s pretty good,” was the response I got back from the nurse.
I did see the doctor, or more often, his nurse practitioner B. B was great. She was straightforward and brutal…in a good way. I saw them both the day of my second PET scan after my fourth round of chemo.
It turns out that some chemo patients experience a bounce of lymph node growth. The first two rounds go great, then suddenly the chemo stops working. I know this because I have access to something called the Internet. The Internet is evil. To this day I don’t know if this is true, but it was first and foremost in my mind. What would happen with my lymph nodes…would they grow, would the cancer spread, would the chemo stop working…Nope, all was looking good and proceeding as expected. It was a “good scan.”
It was a happy night at the Lankes household. And, I only had two more cycles of chemo to go…because chemo sucks.
The End of Chemo
Remember how I said the first cycle went really well? How all those steroids actually gave me more energy and I felt great? Yeah, the second cycle didn’t go as well. With every cycle it got harder. I got more tired, I got more achy. I couldn’t taste anything. The worse might have been when my 13-year-old son had to help me climb the stairs.
The last month of chemo I had to teach a weeklong course. I could only teach the first half of the day, and had a fantastic doctoral student who covered the second half. I should take a moment here to acknowledge that if you ever have to get cancer, being a full professor at Syracuse University’s School of Information Studies is the place to work. The staff and faculty there were incredible. They supported me. They covered courses. I got not only a note of support from the chancellor and provost, they sent a meal for twenty. The entire university acted as a family I am forever indebted to them.
As chemo progressed, I walked more slowly. I lost my breath faster. The two parking attendants at my parking lot would ask how I was. They worried about me. Then one night I had a very frank conversation with one of them. “I’m glad things are going well. I wonder if you could do as well if you weren’t faculty?” She was right. I had control of my hours. I could work from home. If my publications slipped off, I had tenure. I am proud that I was productive during my initial chemo, but there is no question that I was in a privileged position.
I also want to make sure I don’t mislead anyone. I may have been productive while I was sick, but I hardly “didn’t miss a day of work.” I taught all my classes, but I had to pull out of a number of speaking engagements. I sent Skype sessions and recordings in place of me. I had to pull out of positions in professional associations. I had to close down a research project I had started. I had to hand off doctoral advisees to my overloaded colleagues. And with each one of those, with each retreat in my responsibilities at home or at work, I fought.
I would sit in my chair as my wife watched me wince with Neulasta pain. “Take the pill David,” she would say, referring to my painkillers. We would walk and she would stop. “What?”
“Stop and breathe…you are doing too much.”
When something needed to come up from the basement, “Sit!” she would command. “Riley can get it.”
With every slip, with every slowed step, I felt like I was becoming less. Less able, less important, less helpful, less of a man.
Here is the hardest lesson I learned in chemotherapy. I was not battling cancer. The chemo was battling cancer. Battling is the wrong metaphor. I didn’t feel like I was on the front line of some war. No, I was the home front. Once the battle was endorsed, I was the one at home sacrificing to support the war effort: taking the rations and reductions as part of my duty in the fight. The chemo was storming the barricades.
The key, I came to see, in beating cancer through chemo is not fighting, but acceptance. You must accept the drugs, and you must accept that the drugs are going to progressively take from you as much, or so it seems, as the cancer. You must accept that your legs will ache and weaken; that your breathing will constrict; that your bowels will constipate; that you will lose energy. You must accept that for the drugs to do their work – the true battle – you must accept a lack of control.
At the beginning it felt like a fight. I felt like I was waging the war with cancer, and screamed, “Screw cancer.” But the answer does not come from cancer, it comes from the poisons that kill cancer cells, and hair cells, and stomach cells, and white blood cells, and the components of your every body part. It comes as an unrelenting slow darkness that crosses your red lines, and keeps coming, and will keep coming so long as you accept the toxins.
One day you realize – after your good weeks become good days become good hours – this is the price you must pay to live. It is not a moment of fighting, it is a moment of acquiescence. You must give yourself over to the drugs, and your loved ones, and God. And it is hard. It is, in fact, the hardest thing you have ever done. Your whole life you have succeeded through action; through your wits, and your muscle, and your determination, and your own capabilities. But not now. Now you must depend on Bleomycin that eats away your lungs, and Vinblastine that robs you of your taste buds and hair. You must rely on your wife to drive the kids. To win, you must surrender.
Surrender to the process, to the treatment, to the care. NEVER to the cancer. NEVER to the thoughts of death. NEVER to anything other than life and the future.
Then there is a final thought, a crucial insight that must accompany the surrender. If you accept the treatment, and the limitations, and the proxy battle, you can then focus on the other things in your life. You can focus on your son’s graduation. You can focus on your wife’s affection, and the love of friends. You can focus on your work, and your mission, and all the things that will be waiting for you after the poisons and the drugs, and the pain, and the limitations.
So after 6 months, the chemo came to an end. The next steps? Radiation if they still find cancer in one or two lymph nodes. Bone marrow transplantation if the lymphoma is still broadly distributed. But, hopefully, monitoring for recurrence and recovery-that’s plan A.
We had a party. My kids had worked all summer on earning their black belts in karate, and so we had a party for them. But as my wife said, “We have a lot to celebrate.” We invited both sets of parents. We had slushy machines, bouncy houses, and a tent. We took a lot of pictures and congratulated ourselves for seeing this nightmare through.
And we waited…