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The weather was ridiculously gorgeous last week and helped
off-set the painful times. A nap in a hammock is tops for healing. |
I did not end up going on the PUH71 drug trial, nor even undergoing the Phase 0 PET Scan imaging part of it. My timeline did not sync with that of the investigating doctors. It would have delayed my treatment for too long. It may work out in the future, but not now.
Instead, I’ve started a chemotherapy regimen of three oral drugs: Cyclophosphamide, Etoposide, and Procarbazine. They are each traditional chemotherapy drugs with a proven track record for going after Hodgkin Lymphoma cells. I’ve taken these drugs in the past as part of other regimens but at much higher doses, mostly as part of my brutal autologous stem cell transplant prep. I’ve taken just about every proven anti-Hodgkin drug so now we have to revisit what works and new ways to administer it – as well as continue to explore new, novel therapies being developed that give a better quality of life while enduring treatment.
What’s special about this regimen is how it’s administered. A mentor of my doctor who works at another city hospital conceived the premise. The research and results have shown a lot of promise as a long-term maintenance chemo. For seven days I took each drug once a day at different times a day. They are all taken as a low-dose 50mg pill with a glass of water. I took the Cyclophosphamide after lunch, the Etoposide after dinner, then the Procarbazine right before bed (as it causes a lot of nausea, hence why I’d bring a loaf of bread up to bed with me for middle-of-the-night stomach aches).
The theory behind this drug administration schedule is that we’ll keep surprising the Hodgkin cells. Like, “Oh, you think you’ve got cyclophos figured out? We’ll bam! We’re going to hit you with Etoposide. Then, uh-oh, here comes Procarbazine.” We’re continually coming at the disease in different ways throughout the day so as to not give the cancer cells a chance to morph around any one of them and continue to grow. We’re working on eliminating the diseased areas with timed stealth attacks.
We are going with this more aggressive plan because though my scan from a few weeks ago wasn’t alarming, as of my doctor visit last week, I was starting to feel telltale Hodge symptoms and my blood work wasn’t looking stellar. My platelets have been dropping and my sed rate (or erythrocyte sedimentation rate (ESR)) is climbing. The sed rate measures the amount of inflammation in the body and can be used as a non-definitive indicator of when the lymphoma is flaring. We must nip it in the bud.
But then there’s me in the middle of that battle and it hurts to be the carrier. I’ve been hurting very badly in fact. I’m not just surprising the disease, I’m also sneaking up on my body with these toxic chemicals and it hasn’t been very happy with me. I can’t blame it all on the chemotherapy. It’s also the side effects caused by tapering off of the 50mg steroid course I started February 27. On April 9, I began the 3-week drop: down 10mg at a time for five days at a time. It’s felt like an amusement park ride where the seats of screaming riders are raised way high into the air and you’re strapped in with your feet dangling down then dropped real fast and stopped harshly, then dropped fast to a lurching stop again.
My stomach, head, emotions, muscles and bones have ripped and twisted taking a while to catch up to each reduction in the medication. I was wired for speed for several weeks there walking miles a day around Manhattan, accomplishing great goals, exploring, eating and loving life despite the fact that my eyes were bulging out of my head and my heart would race every time I tried to lay down to sleep. The steroids served me well when I needed it; I had a real good run there traipsing through the rocks and trails of the desert. Now it is time for the 'roids to go and for my body to find its natural state again. This is why Roger Clemens should be stripped of his accolades if proven guilty: that stuff gives people super human advantages.
The more the steroid is pulled, the more I feel what was being masked underneath its good effects. Prednisone really is both a wonder and a devil drug. I’m very achy, like arthritic joint achy. My primary complaint is an emanating dull ache right at my sacrum, where I was radiated for 10 days. At times, it is nothing short of seething. This is likely a long-term effect from the radiation itself and the muscle damage it can cause.
As the steroids are no longer stopping the inflammation in my body, out have come the chronic GVHD symptoms in my mouth. Again, it’s a dry desert in there, my tongue is tingly and scrapey and my thirst can’t be quenched. It’s strange to get back these familiar feelings, which are actually now my “normal” post-transplant. There’s some assurance in that. Loosening the counter-effects of the steroids is letting my sister’s immune system back out of the gate. We can only hope that with those bulky areas of disease gone from the radiation, that my new immune system is again able to assist in seeking and destroying cancer cells right along with this current chemo treatment. It very likely wasn’t doing so while I was on the Prednisone course.
Because the drugs I’m on are not novel, targeted therapies, they are going after all fast-growing cells in my body. I don’t like this idea and therefore don’t want to remain on this any longer than I have to; I must keep my body strong. I will be absolutely devastated if my hair falls out again; it is a true possibility. But I’m giving this drug combo a chance because I’m told that it’s the best shot to wipe out the apparent lymphoma in my chest, abdomen and femur. My PET Scan report says that the areas of disease involvement are not really significant at all, and I worry that we’re cooking a simple piece of toast with a blowtorch, but have to keep reluctantly reminding myself of the fact that this disease has shown itself to be fast moving in the past. We have to stay ahead of it. So right now, blowtorch is the weapon of choice. And I’m on FIRRRRREEE.
I have been a hot mess of emotions as both chemo and steroids play with hormone levels, never mind facing the very difficult task of taking yet more chemo after close to three years of constant treatment and a traumatic donor stem cell transplant. I thought I was done. I had a very hard time swallowing that first chemo pill last Wednesday. Craig had to give me a pep talk. He also had to give me a pep talk Wednesday afternoon when I thought my hips were going to give up and give out on me and I couldn’t speak any words without crying.
The start of the chemo regimen was complicated by the fact that my prescribed Etoposide 50mg pills were nowhere to be found in the entire state of Connecticut. It was on backorder at every pharmacy. Even Hartford Hospital couldn’t find it for me, though they made a valiant effort collecting the few that they did have. It was nerve racking and scary that I could not find the medication I needed. After a major fight with Arrow Pharmacy and the dimwits that work there, I completely lost it. For the first time in three years Miss Independent actually asked Craig to take over. I totally lost my shit. I knew that I couldn’t even speak to my team at Sloan-Kettering without starting to sob I was so shaken by the whole thing and embarrassed by how much it shook me. This was why I couldn’t do the reading at La Paloma that night.
Arrow Pharmacy had not only told me the day before that they ordered the drug; they told me three hours earlier that it was there and to come pick it up. When I got all the way into downtown Hartford thinking it would be a quick grab, it was not there. The labels were printed but there was no drug attached to them and some idiot didn’t see the difference when they confirmed with me that afternoon. Not only was it not ordered, but they couldn’t even order it as it was on backorder from the manufacturer. Somehow they forgot to tell me that so that I could find another route to get it in my hands – completely incompetent.
“Maybe your doctor could just call in a different prescription?” The clueless pharmacy tech suggested.
“This is a CHEMOTHERAPY drug. I am a CANCER patient. I need to take this TODAY. There’s no replacement drug; it’s not like Claritin vs. Zyrtek, Dumbass (I didn’t say dumbass, but I wanted to).”
My body posture could not have been any more aggressive as I leaned half-way over the pharmacy counter and listened to the “manager” stumble over her shapey self telling me that, “They could get the injectible form of Etoposide from Connecticut Children’s and he could probably drink that … . It might not taste good, but they could maybe flavor it and your son could get it that way.”
There were so many things wrong with that "solution". My defense was to use big vocabulary words and a firm, loud, but calm voice to tell her that it was for me not my “son” (which is a stab to a very sore wound as it is for someone rendered infertile by cancer treatment). I am the patient. CCMC has nothing to do with this. The prescription is from Sloan-Kettering in New York City, fatass dumbass (said in head). And no, I’m not going to F’in (I may have said F’in out loud) drink the toxic chemotherapy that is supposed to be injected into the vein. I was supposed to start the drug tonight. I had thought everything was all set.
They said they would make some calls around (I had already done that for the past two days). I said I needed to get some air, went outside gathered my composure, went back in and said: “Just give me my prescription. I am much more capable of getting a hold of this medication than you are. It is now 4:30pm. I need to track down my doctor in New York and get this figured out. Thanks for nothing.” and left making a big scene ripping the prescription paper out of the pharmacist’s hand. This is true-life cancer patient stuff. Unbelievable. If you don’t stay on your toes and pay attention it’s very easy to literally get killed by others deadly incompetence.
For every incompetent person in the world there are a dozen caring, capable and efficient ones. I put a call out on Facebook asking if anyone could get the drug for me from the pharmacy at Sloan-Kettering and save me a six-hour trek. Within minutes I had offers. My former supervisor at the Greater Hartford Arts Council, Rie Poirier-Campbell, just happened to be going to the city for meetings, went out of her way to pick it up for me, and brought it back to Connecticut with her so that I could take the pill that night, simply saying she was happy to help and sometimes you’re just in the right place. There were several others who jumped right in and offered to overnight it to me, or that also happened to be going into Manhattan for the day and said they could swing through and pick it up for me. It restored my faith in human kind after my dreadful pharmacy experience and made me so grateful for the kind of people that I have surrounding me in my life.
It’s been a rough week to say the least. I finished this first 7-day round of CEP on Wednesday. I now have a week off for recovery and I go into the city to see Dr. M on Monday to check in as to how I’m doing with it and see if we need to make any adjustments before picking up with the next cycle. I have two more days of 10mg of Prednisone then I am off completely. I’ve already noticed that I can sleep through the night again and that I don’t have that shaky angst inside me that was fighting so hard against my fatigue.
The steroids have also caused muscle weakness, particularly in my quads. For me, this is devastating and I am working to be sure that it builds back. It hurt so bad just two days ago that I felt unsafe driving or walking on my own as I thought my legs would just give out. Squatting down to the toilet seat was difficult as was going up stairs. However, their strength seems to be coming back a little more each day. The biggest thing that I can do is to remain active and not lose the strength I worked so hard to build after the immobility of transplant.
Otherwise, I’m doing my best to live with normalcy and remain focused on all of the other aspects of my life: family, friends, house projects, writing pursuits, learning, work projects. I refuse to let treatment take over my life and am instead working to incorporate it well with a lot of stretching, napping when I need to, a big focus on a good night’s sleep, eating often and well, following an anti-inflammatory diet, and walking even a little bit every day. I must listen to my body, avoid unnecessary stressors in my life, and be kind and gentle with myself. Easy to say, not as easy to do, but it is how I have and will continue to survive.
I attended a fantastic writers weekend full of panels and lectures at the Mark Twain House & Museum in Hartford last weekend. It was wonderful. Sure, it was difficult to sit for long periods on my aching sacrum and wicked tight hips, but I sat cross-legged or with stacked knees, conscious of continually stretching and popping out my bones. I was enthralled by everything I learned and at the chance to hear from some of my favorite playwrights and learn of their creative process. At lunchtime I went out to my car and popped my chemo drug and came back in mingling in with everyone else. No one would even know.
My mom spent the day with me at my house on Wednesday as I was just far too tired and in pain to be able to do anything on my own. She said to me that life’s all about peaks and valleys and that I’ve been through a lot worse shit than this. It’s true. I’m in a valley right now, but I can see the peak real close ahead. I need to regain my patience with the process and stop being so hard on myself. We’re doing this to get me better, forever. I need to stop trying to figure it all out because there is no answer and no lifetime guarantees.
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But then there’s me in the middle of that battle and it hurts to be the carrier. I’ve been hurting very badly in fact. I’m not just surprising the disease, I’m also sneaking up on my body with these toxic chemicals and it hasn’t been very happy with me. I can’t blame it all on the chemotherapy. It’s also the side effects caused by tapering off of the 50mg steroid course I started February 27. On April 9, I began the 3-week drop: down 10mg at a time for five days at a time. It’s felt like an amusement park ride where the seats of screaming riders are raised way high into the air and you’re strapped in with your feet dangling down then dropped real fast and stopped harshly, then dropped fast to a lurching stop again. .jpg)
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