Friday marked seven weeks since my last chemotherapy treatment. I’ve longed to start some kind of countdown since the last chemo, but only if it marked the end of treatment as no disease had been found. Instead, I was counting the moments until I started a new treatment, one that had more promise according the the CARIS RNA test than the cisplatin and gemzar supposedly did. A treatment my insurance company might not pay for, one I technically can’t afford, but the one that might save my life.
Because I have cancer.
I know that’s common knowledge now but sometimes it seems so surreal even after months of treatments and oncologist visits. I have cancer. I was supposed to be having a baby with my amazing husband; we even picked out names. I wasn’t supposed to have cancer. No one is supposed to have cancer. We all have dreams and ambitions; cancer is like a giant roadblock in life. It totally and completely ruins plans, at least in the short term. Sadly, if you’re a medical professional or have knowledge of cancer at all, you almost see it as a black cloud over the long term. Cancer really, truly, sucks and not getting what you need from the health insurance companies doesn’t exactly make it any better.
Until now, I am not sure I realized just how much chemo affected me physically other than “typical side effects.” For the last seven weeks, it was almost as if I had never been diagnosed (except for when I look in my mirror because then I see a port-a-cath scar and short, thinner hair). No nausea or vomiting. More energy than I’ve had in months. The only thing I noticed was a bit more pain in my abdomen than normal, but nothing that a single pain killer didn’t do away with. Back in May when I first had all my symptoms, the pain would be so terrible that it would keep me up at night. Vicodin didn’t even take the edge off. For a single Tylenol with codeine to take the pain away, that was saying something. I felt healthy, except that I clearly am not.
All of this inspired me to take more control over my treatments. I could either continue messing around with companies deciding my fate or I could do what I had done at my last appointment and put my foot down. With things changing at work, I knew I could no longer be the passenger in the chemo car. I had enough time looking at the map of where we were going and needed to get behind the wheel and drive. I was nervous. After all, the last appointment I went to I had told the nurses I didn’t want to do chemotherapy. I expected to find one irate oncologist when I returned, especially as they had called him at home during his vacation to get a second set of orders. Top that with the projected cost of my new treatment and the fact that work had told me I was back to floor nursing or needed to go on leave without warning me or either managers of that decision…well, it was a daunting task to arrive to chemo on Friday.
But I went. Milo actually left work early to go with me upon his own insisting. He likes to be at the appointments so he can hear what the doctor has to say. Malika, who is my chemo buddy almost all the time now (and I love that!) was busy with an orientation for her final semester of nursing school. Walking in with Milo, it felt a lot like the very first time. As I said, I know I have cancer, I’ve seen the scan. It is still sometimes like a nightmare you can’t seem to wake from. At least it is for me.
Dr. Brooks saw us this week and I talked to him about Linda and her read of the scan. He apologized and agreed with me: in all honesty the scan said my cancer was stable, not really smaller. At least not to us. By this time, I had come to terms with the fact my cancer wasn’t miraculously getting smaller, much as I hope and pray it does. I didn’t receive any Christmas miracle. I still have cancer. I’ve dealt with it, but I made it clear I didn’t appreciate the fact that Linda had completely misread the numbers on the phone. Dr. Brooks, ever the mediator, did his best to let me know I was heard.
I told him how my desk duty had come to a rather abrupt end and I needed a note to go back to floor nursing. He seemed wary, of course, since we didn’t know what the new drug was going to do. Fortunately, Ann is being uber awesome and going to work me into the schedule slowly over time rather than my just starting at three days a week and hoping not to fail. I’ll work one day a week for two weeks to see how I do and we’ll reassess after that. I’m hoping it works out, I don’t have much paid leave left and I am not sure what is in store for me as far as the Irinotecan (more on that in a minute). He only released me because Ann is willing to work with me; he made that abundantly clear.
He also said I could return to soccer, even if I only acted as a sub. I’m considering it; I miss my team terribly.
Now I brought up the new drug at the same time as making note I was clearly done with the old combination. As I keep saying to people, it’s really nice that the cisplatin and gemzar have kept my tumors at bay, but I cannot spend the next fifty years on those drugs. Besides the fact that the side effects are just cruel, who wants that kind of life? Dr. Brooks agreed. In fact, he told me that he agreed with the choice I made at Christmas too. His exact words, “I can never say what I would do in your shoes, but given the situation you made the right choice.” Why thank you. It’s not as if I can take it back –hehe.
I told him I wanted the Irinotecan; we’d find the money for treatment somehow if the lovely people at my insurance company turned me down. If this was going to be a good option for treatment, I wasn’t going to go down without a fight. Dr. Brooks agreed. He and his office staff promised to help me fight the battle with the insurance company. They weren’t giving up on finding some way to keep our costs low. I’m incredibly thankful for that, considering each treatment is just shy of three thousand dollars. At that rich price, I can’t exactly afford the four Dr. Brooks would like me to have before the next scans (eight weeks from now). Heck, at that price I don’t know if I can afford half.
So far, though, this drug is much easier on me except that I have every single side effect except the most common one: diarrhea (though it can apparently take days to show up.) I didn’t have Carla this week, which is disappointing since she is really good about covering the side effect talk. This nurse just handed me a sheet of paper and walked away. I didn’t read it until Saturday morning, which explains why I didn’t realize I was having quite as many side effects to the drug as I was. In fact, on the day of my treatment I had several of the “less common” side effects: runny nose and hot flashes couple with a dizzy/light headed feeling I attributed to the use of ativan as an anti-nausea medication. When I saw that those were actually the effects of the drug, I was both relieved and concerned. I didn’t like the feeling the medication gave me and I might have to be more vigilant about how quickly it runs in, especially now that I know it also causes chest and abdominal pain which I suffered from as well.
Saturday I was better, but felt just wrong. My stomach was a little queasy, but I tolerated food and beverage just fine. I wasn’t exceedingly hungry, so I know I ate much fewer calories than normal (so says the scale as well). I was able to be up and about, but by mid-afternoon I was feeling a little tired. When we went to visit Milo’s family here in town (his Mom, Dad, Aunt and sister!) I actually fell asleep on the couch. I was ridiculously disappointed in myself after that; I had wanted to see them all so badly but the exhaustion just won out. I blame it on the fact that I hadn’t slept really well Friday night because of the ongoing battle with hot flashes. That would have been feasible if Sunday I hadn’t been just as tired.
Sunday is the only day Milo doesn’t work or have class, so we usually try to use it as our day together. The only chore we try to leave for Sunday is laundry, though that doesn’t always work. This time, Milo did the laundry and I curled up on the couch. I really had no energy to do more then flip through stations. I also had very little appetite, but I managed to eat. However, I also managed to fall asleep randomly in the middle of the day. I was really surprised how tired I was after a decent night of sleep until I saw that drowsiness could also be a less common side effect of the drug. That didn’t make me uber happy. How am I supposed to go about life and return to work if I am sleeping all weekend after chemo? How long will it take to start feeling better? How much more should I expect?
For a first chemo weekend, however, this was a cakewalk. I didn’t go all Exorcist and spew up every last thing I had eaten. I didn’t suffer the bowel effects that I had been warned of (“We don’t call it I-run-to-the-can for nothing!”) I had kept down food and been able to do some activities, though nothing strenuous. As far as treatment side effects go, this was nothing and I am pleased that I survived. I had been really concerned that a new treatment would start the same the old treatment had: really badly. So far, so good. I’m keeping my fingers crossed it stays this well and that the tired wears off. I’m no good to anyone if I can’t stay awake.