Out of Control with Cancer
The end of the story is this: it is over. It worked. I am grateful.
So why do I feel so traumatized?
I grew up thinking that breast cancer was my destiny. Inevitable. A foregone conclusion. My mom had it and so did her mom and so did her aunt. I was doomed.
So when I was diagnosed with cancer this summer, I was, well – shocked. Because I had lymphoma, not breast cancer. And it was the best kind of lymphoma ever – the slow growing variety that my doctor said would not kill me.
Call it cancer lite.
Still, it was recommended that I get 6 treatments of a combined chemo (Bendamustine) and monoclonal antibody (Rituxan) to target the nasty B cells that were taking over my abdomen. Reluctantly, I signed up.
The treatment was said to be well tolerated and I would not lose my hair. I’d probably gain weight because of the steroids. I could still eat fruit (wait – why wouldn’t I be able to eat fruit?) as long as I washed it for one minute. Think about that. A minute is a looong time to wash a nectarine. I could also go to the dentist for a cleaning, as long as it was right before a treatment cycle began. I would be more sensitive to the sun (how is it possible to be more sensitive than I already am?) and could not take ibuprofen or aspirin because of concerns around bleeding. Hmm…Tylenol has never touched any pain I’ve had. And I had to call if I got a fever of 100.4 or higher. I would be immune-suppressed and vulnerable to illness.
This was starting to get scary.
Each treatment was two days. Treatments were 28 days apart. Like having your period, mom said my daughter. Day one was almost a full day and day two was about half a day. I would sit in a Barcalounger and could bring one other person with me.
That first treatment was, well, awful. I had to start a drug to prevent tumor lysis syndrome (lisoprinol) and steroids (decadron) a few days before. In addition to the steroids and lisoprinol and the two treatment drugs, I got Tylenol, Benadryl, IV Pepcid, and two long-acting anti nausea medications. Both days.
When did medicine switch from treating symptoms to preventing them?
The treatments were Thursday and Friday. That weekend, I felt drugged and out of it. My brain didn’t work, my body felt inhuman. I smelled like a Superfund site and I felt like a drug addict. The anti-nausea medications constipated me. For days. The steroids made me feel like, well, I was on steroids. I walked several times a day with an aggressive energy. My house was never so clean. And when, as directed, I stopped taking the steroids, I could not get out of bed. I was completely flattened.
I slowly climbed out of that first hole. I felt anxious and eyed food with suspicion. Favorite foods made me queasy – coffee, anything dairy, carbs, sweets. Kind of like being pregnant again. I lost 20 pounds that first month. I lived on well-washed fruit. I crashed at 9 pm every night. I saw germs everywhere and washed my hands compulsively, avoiding hugs, handshakes, and the cat litter box.
Before I was to begin my second treatment, I was told I had to have a central line – basically access into a big vein because the chemo was an irritant when given through a small vein. I was told it was for the comfort of the nurse and that I couldn’t receive treatment without it. Really? I had read about portacaths and had told my doctor I didn’t want one. So for my first treatment, I was given the IV in the teeny tiny veins in the back of my hand. Sure enough I got some phlebitis (inflammation of the vein with swelling and pain).
I almost bailed at this point. I was working with two oncologists at two different hospitals and one of them told me that her hospital did not require a central line for this drug and that the nurses could evaluate my arm veins (which are huge) if I wanted. But that would mean driving 30+ minutes to each treatment, back and forth. Proximity won. I stayed with the hospital that was a 10 minute drive from my home. And I had to make my choice.
My choice for central access was either a PICC or portacath. Look them up. Everyone likes their port. Most people end up with a port, I was told. I knew 2 women who had ports. Neither liked it much. One had a massive infection on her chest which required the port’s removal. The other said that it never stopped hurting.
Neither the PICC nor port sounded good to me. I felt like I was starving and being told I could have dog food or cat food. I had scheduled the portacath surgery and done the necessary pre-screening and special germ-killing washing beforehand. But after talking to the radiologist on the morning of, I decided on the PICC for one reason: he told me that PICCs are used for short term treatments and are good for only 6 weeks. That sounded heavenly: I could have one in for 2 treatments and then get a month break before having a second one inserted. I would need 3 in all. The idea of having surgery to get a port installed and have the nurse insert the IV into my chest at treatment was repulsive to me.
When I showed up for treatment with my newly-installed PICC (which I already hated), my nurse asked me why I didn’t get a port. Everyone likes their port. When I told her I could have the PICC taken out after six weeks, she said that most people keep theirs in for the entire six months. She even doubted what I told her and called down to radiology to ask if they had told me that six week thing. Hmm. Maybe the radiologist told me the six week rule to encourage me to get the port. Everyone likes their port. Well, not me.
Here’s what I didn’t like about the PICC: it was external so I had this very obvious looking medical device sticking out of my arm. I wore a fishnet stretchy covering over it so that it wouldn’t get caught on things. I had to wrap it in Gladwrap Press’n Seal before I showered and my husband (a physician) had to change the dressing every week. Here’s what I liked about my PICC: I only had to have it in for six weeks at a time. Did I mention that?
For the second treatment, my steroids were tapered so that I wouldn’t get flattened. Well, that worked, but I began to lobby for no steroids. And fewer anti-nausea medications. For my third treatment, I had no steroids and only one anti-nausea medication. Still, I felt over-drugged for symptoms I wasn’t experiencing. I never showed signs of infusion reaction nor did I have severe nausea. For my fourth treatment, I was given Zofran for nausea instead of the other two drugs. Yet, I was still not given a choice. I got it in my IV. I wanted no anti-nausea medication. I found that I recovered more quickly and felt overall better with fewer drugs in my system. For my fifth treatment I was given 2 Zofran pills. I took one. No IV anti-nausea meds. Still, each treatment left me feeling crummy for about a week and a half.
The chemo began to show toxic signs in my body: my blood counts were low and I got a mouth sore. My fifth treatment had to be delayed a few days so my counts could recover. I was encouraged to get a shot of Neulasta to boost my neutrophils, but warned about the bone pain it could cause. I settled instead on one shot of Neupogen, about 1/20th the strength of Neulasta. The shot worked and my counts were fine when I went back four days later. Out came that awful PICC at the end of day two.
That treatment turned out to be my last. I opted not to have the sixth treatment because I was in remission after number three and the chemo was starting to have some toxicity. And I didn’t want to have that awful PICC put back in for that last treatment.
Looking back I am grateful that the treatment worked and that I no longer have tumors. But I wonder if the process could have been more patient friendly. Instead of giving every patient drugs to prevent every possible side effect, why not give a choice? Had someone asked me if I wanted drugs to prevent nausea or drugs to treat nausea if I got it, I probably would have chosen the latter. The treatment was not associated with a lot of nausea and I do not easily get nauseous. And why have a blanket policy around central line access? Not every hospital does. I felt bullied and cornered into doing something I did not want to do. Perhaps a larger arm vein or a slower infusion would have been enough to prevent phlebitis.
But we’ll never know.
The experience made me realize that once you sign on for a medical treatment, you step onto an escalator – and, like an escalator it’s really hard to get off. Every intervention brings with it a protocol and sometimes a side effect. You go into it thinking OK, I’ll get this treatment – I will permit these chemicals to be infused into me - because I’m told it will make my cancer go away. You then learn that in order to get this treatment, you have to submit to countless other chemicals, interventions, and scans. It’s like Get Smart – you walk into a door and there’s always another door you need to go through. And another. You never feel in control of your body. You never feel like you have a real choice. Feeling out of control is a huge component of being a patient and for me, it is this element more than any other that causes the trauma that I feel even now, over eight months after the end of my treatment. Allowing patients to participate in decision making around their care – giving them real choices - even if it means more work for the caregiver, can only be a plus.
Debora Hoffman lives in the Boston area, works in a domestic violence agency, and is a climate activist.