Years ago, I ran into another cancer patient over a clearance rack at a Marshall's store. She said to me that her chemo "hurt." At the time, being newly diagnosed and still feeling invincible, I didn't understand what she meant. I saw chemo as a necessary means to an end, something that all patients had to endure to get to a cure. I didn't think of it as hurting, only as healing.
But she was right. Chemo does hurt. It hurts very, very badly sometimes, like right now. It's four days after my latest infusion and I feel as if that bully child with the metal bat is back at me. He's hit me repeatedly across the back, in my jaw, and then jammed the bat down my throat causing swelling sores and rawness. Every tissue in these areas is swollen and emanating ache. I feel as if I'm swallowing over a bed of rocks.
The hurt can come out of nowhere – no warning, no sympathy, no prisoners. How is anyone supposed to deal with this balance of hurt vs. healing? Why should there have to be so much hurt in a situation already saturated with pain of all kinds. The need for further developments in cancer treatment is so dire. The side effects of the treatment should not be worse than those of the disease. It is counterintuitive and unfair. Our world is far too advanced for this dichotomy to still be a reality.
Thursday, January 19, 2012
I'm feeling decent, though the Vinblastine single-agent chemotherapy that I'm on is pretty tough. The primary side effects have been fatigue, deep tissue aches, jaw pain and tightness, and neutropenia (very low white blood cell count/immunity). The drug is given through a short syringe my nurse injects into my port by push after my anti-nausea and steroid premeds are run. It’s incredible what affect such an innocent looking amount of medicine can do. I can’t let the dosage fool me; it packs a punch!
|Scaling the wall|
The Vinblastine has done a number on my white blood cell count. The plan was to get weekly infusions, but my bone marrow has said otherwise. To give it some credit, I have been very heavily treated and my marrow is quite compromised. I’m proud to see that it has still been able to produce blood cells at all – for this I am grateful. I’ve never been unable to rise back to normal blood count levels with time or drug assistace.
To remain safe, my WBC count has to be at least 1,000 in order to receive treatment. It hasn't been able to stabilize quickly enough to endure the original, aggressive weekly plan, so I've been more on an biweekly treatment basis. My counts were too low to get treated last Wednesday (ANC 0.6), which is why I felt pretty good last week and this past weekend without the chemo effects. In fact, I felt good enough for a day of indoor rock climbing with Craig. It was our first time and something we both loved. I especially loved the sweet reward of getting to the top and the mental challenge it took to figure out how to get there. I had no problems beyond any normal climbing fatigue and a few battle bruises endured from banging my knees into the wall. It was an exhilarating, rewarding and gratifying experience. There will be more of these types of adventures to come for me in 2012.
Wednesday, January 4, 2012
|Angry Karin on first day back in chemo chair.|
I did start the Prednisone the day after my PET Scan and overnight NYC visit. I didn’t get much effect from the 50mg of steroid. The goal was to reduce the inflammation in my body, but I didn’t feel much of anything except a harsh blow when I came off of it. I did however get an effect from the next treatment step. That Friday, December 16, I had my first infusion of a traditional chemotherapy of my treatment past – Vinblastine. I had received it as part of my frontline ABVD treatment – the very standard frontline treatment against Hodgkin Lymphoma.
The idea of a variation of the R-CHOP chemotherapy regimen had been being tossed around for a while by my transplant doc, lymphoma doc, and the lymphoma board at Sloan. It was what was suggested as an alternative to the Revlimid but one that would be a sledgehammer at me. My doctors and I were hesitant to use it as it would be a very toxic blow to me and we are all on the same page that my biggest concern is quality of life. I do not want any more toxicity than I need and I want to be able to enjoy and live my life as much as possible.
We decided to start with a single agent from that regimen, Vinblastine, in order to see if just that one drug would do the trick to melt the current disease activity. Taking just this one drug would also allow me to travel to California with Craig – What? I know! (More on that glorious trip in the next blog – it wasn’t just artistic allusion in those Counting Crow lyrics, we really did go.) My Sloan doctors were more than supportive of us taking this vacation and wanted to do everything possible to ensure that I’d be able to enjoy it.
I received two doses of Vinblastine, one each Friday before we left on our trip the morning after Christmas. I got to skip a week while we were in Cali. The upside to taking a more traditional chemotherapy drug is that I can receive it close to home. I’ve gotten the IV injection right close by, back in the familiar haunt of Hartford Hospital’s cancer center. I’m back under the care of my beloved Dr. Dailey who is working beautifully in tandem with Drs. Moskowitz and Sauter at Sloan-Kettering. I truly have the dream team of doctors. They are kind, wicked smart, understanding, accommodating, thoughtful, and 100 percent in sync with who I am, what my health goals are, and what is important to me.
It’s difficult being back at the treatment center where I started with all of the nurses, lab technicians and secretaries that have seen me from the beginning. It’s as painful for them as it is for me to see me back in the chemo recliner. But at the same time, it’s comforting. They all know my long treatment story, my family, and so much about my life. There is a high level of familiarity there and it takes away the fear of the unknown and unfamiliar. In that regard, I feel fortunate to have forged such close relationships with the team there. We laugh a lot together and I get a lot of hugs and ushered into special rooms on the fast track – the privileges of being a longstanding “client.”
At the first treatment, I was pretty angry and tired. I didn’t want to be there. Craig and I were hosting our big annual holiday bash the following day where nearly 60 people would be at our house and I was much more focused on the fun of that, not this chemo crap, and the unknowns of how it would affect me. But I did it – with the escorting of my mom to make sure that I did it. The infusion is a push IV infusion so the drug administration itself takes about two minutes. I receive Alloxi anti-nausea and Decadron steroid beforehand then a bag of fluid after the IV push. In all, the whole process takes about 90 minutes, including doctor visit. It’s doable, though certainly not as convenient as swallowing a pill at home.
The biggest side effect was constipation – oh, very bad constipation. I was blocked up all through Christmas. This is caused in some part by the drug and a big part by the nausea blocker, as it doesn’t just block one exit, but both. Trying to get things moving was not fun. I felt the normal wooziness the day of the infusion, but was pretty good after that.
The biggest reward is that the pain is ceasing. After just two infusions of Vinblastine, I haven’t felt any pain in my hips and my back pain is highly reduced. A few days after the second infusion (the day before Christmas Eve) I didn’t have to take any more pain pills. This was fantastic as neither the treatment nor the Hodgkin symptoms held me back through all of our holiday events nor our vacation. I was very tired and again, very constipated, through the holidays but things really eased up for me that last week of December.
I went to Sloan-Kettering yesterday and Dr. Moskowitz was thrilled that my pain was reduced and saw this as a good sign that the Vinblastine is working. She told me that she could cry she was so happy. We decided not to add in the other drugs of the R-CHOP or CHLVPP regimens that we had discussed and stuck with what seems to be working with as minimal toxicity as possible. She is fully behind this plan knowing that it allows me to keep my active lifestyle and it was wonderful to rejoice in that with her. It’s not to say that I feel like a million bucks – far from that. But when you’re in a position like mine, the “feeling good” scale is pretty skewed. For me, this is fantastic compared to what early December was.
|Happier Karin Week 2 - maybe because carolers |
came around to sing for the patients at the cancer center.
Another big development is I have mild Graft vs. Host Disease of the mouth. It is likely a chronic condition, something that develops in 60 percent of allo transplant patients. This is wildly uncomfortable at times, but so thrilling! I can’t believe I’m rejoicing about it, but when I learned yesterday that the weird growths in my mouth are GVHD I wanted to do a happy dance. Dr. Moskowitz sent me over to Dr. Sauter’s clinic, where he came down from the hospital making special accommodations to see me because he was so eager to look in my mouth. All three of us were pretty psyched that because if my sister’s immune system is going after the cells of my inner cheeks and lips, it means they may also be going after the lymphoma. We’ve got some immunotherapy action happening!
My mouth had been very dry, tingly and tight for weeks. The night of my first infusion of Vinblastine, big raised white bumps rose on the inside of my upper lip and along the inside of my cheeks at my gumline. There were lines of white raised trails all along my cheeks that were scraping up against my teeth and gums. The first two nights were pretty painful and I couldn’t eat or drink much without enflaming it.
At that point, we weren’t sure what was going on. It didn’t make sense that the sores were from the Vinblastine. Customarily, it takes at least a week after chemo for it to drop blood counts enough to cause mouth sores. And these mouth sores weren’t open and seething like ones in the past. They were more actual raised growths in my mouth, kind of like under-the-skin pimples on the inside. It felt like there wasn’t enough room in my mouth for my cheek tissues as the skin was so taunt and overgrown. The growths remained for a week though reduced in severity with each day. Prescription “Miracle Mouthwash” helped to numb and soothe the areas as it’s basically like swishing Novocain around your mouth.
Before my second infusion, Dr. Dailey took a look at the mouth growths and found the whole thing so curious. By phone, my Sloan doctors did as well. There were murmurs that this could be GVHD. Of course, I had done my research as well and was convinced by the photos I found online on medical sites that this was in fact what I had.
After the second chemo infusion, the mouth irritation is all but gone. My cheek tissues are scarred and swollen and my mouth is still incredibly dry, but by day 2 in California it was no longer bothersome and didn’t affect my eating or drinking at all. This further solidifies that it is GVHD of the mouth mucus membranes – a common manifestation.
Dr. Sauter explained that the sores were going to come whenever they came. It was likely just coincidence that they flared the day I started the Vinblastine, but that the chemo is actually what is making my mouth better. In his words, the chemo is like “taking a bazooka to my immune system” and is stopping my sister’s cells from attacking my mouth because it is suppressing it. Aha! Makes perfect sense. The hope is that the chemo is working in tandem with my sister’s immune system to go after the lymphoma. He still likes the idea of doing a Donor Lymphocyte Infusion with more of my sister’s cells after a few more hits of the Vinblastine to really get the lymphoma under control. I’m considering this option and will see where my body and head are at in February after four more doses of this.
To help control the mouth irritation, I have now started a steroid mouth rinse. I have to swish it around my mouth for five minutes twice a day. It brings targeted steroid therapy right to those mouth mucus membranes where the auto-immune action is happening and will reduce the inflammation there. If all I have to deal with regarding GVHD is doing a mouth rinse for the rest of my life, I’ll take it.
I’m at the Avon Cancer Center right now getting my third infusion of Vinblastine. Hopefully it continues to do the trick. I’m currently neutropenic again so I received a shot of bone marrow-stimulating Neupogen yesterday at Sloan. Seems that it worked: my neutrophils are up to 3,000 and my bones have the aches to prove that progress. Bring on the poison; continue the healing.
Tuesday, January 3, 2012
“You are extremely anemic,” Dr. Moskowitz said as she pulled up my bloodwork results on her computer. She looked at me with great concern and it seemed that all the symptoms I had been describing since the beginning of our Dec. 13 appointment came together and made sense.
My pain had gotten to be extreme, waking me up writhing in the morning, preventing me from sleeping, or worse, the gravity of it waking me up in the middle of the night. It would throb and seethe mostly in my right hip – a pain that emanated from deep in my bones yet would spasm through my pelvis and upper leg. It brought me to tears and it forced me to take some of the pain medication from the bottle I had from my transplant procedure. I called my parents the night before this regular check-up at Sloan-Kettering. I knew that I wouldn’t be able to handle the train and I needed a ride in. My parents were happy to oblige – my father’s first time driving into Manhattan – and I was able to stretch across the back seat with a blanket and pillow alleviating the pressure on my painful sitting bones.