On my 44th birthday, I had the appointment with the oncologist who is going to try to save my life. My surgeon explained that I have a 50% chance that it won't come back but Melanoma is a nasty beast and does come back in some form half the time. Diagnosed at Stage 3 is frightening stuff but he said it was better than a late stage 2 (which means the mole created a bunch of clone moles to destroy me faster). Mine was just sending crap instead of making baby moles.
So, I meet with this late 30s doctor who I also love. She tells me that five years ago she would have just held my hand and told me there was nothing more she could do for me. Now there are a few drugs that are helping to keep the cancer from coming back but even those only push the odds in my favor by 5-20%. I'll take it I say. She is also impressed by the Nemo story, telling me she knew some dogs could do that but had never come across a patient in her practice who experienced it so she thought it was really cool. When residents shadow her, she tells them the story and reminds them to listen to the animals!
So, she explains the clinical trial to me after talking for a while. She thinks my positive attitude, age, good health make me an excellent candidate for the trial. I can randomly get the standard drug, Interferon or the standard dose of Ipilimumab (yeah-say that even one time let alone three times fast) or the higher dose of tongue twister drug. I need some test before I qualify and she sets me up to see her nurse in a conference room (aka small room with a few couches to remove the exam room feel).
Well, in comes this ball of fire, fast talking, energetic, very petite nurse. She's funny, great, quick to chuckle (and no matter how crappy you feel, you have to giggle too) and full of information. She goes over the clinical trial because, really, my other option is CT scans every 3-6 months with no drugs. She lets Dave and me talk it over for a bit and is ready to send us home to sleep on it. No way I tell her-we are signing NOW! She agrees but makes me call her in the morning just to be sure. Why sign then? Well, it was my 44th birthday. I wanted to celebrate it by doing the one thing that could save my life. She got so excited and was hugging me and felt it was a good omen, too.
Once again, the schedulers work their magic. I have a PET scan, brain MRI in less than a week. The only problem is my insurance has to approve it. It's Friday afternoon, I get the call that there was a cancellation and the PET can be done 8am on Saturday. CRAP. Call insurance and they tell me there is no way I'll get approval in time. I leave a message on Nurse Dynamo's voicemail. She calls me back all cheery and I'm ready to cry. She wants to know why I am so upset and I explain. She then talks me down from the ledge and says "This is not your problem. It is now my problem. You are to let this go and just show up tomorrow at 8. I have people working on this so stop your stressing. You've got other problems to worry about in life besides this." I try to protest but to no avail. An hour later, Nurse Dynamo calls back with approval numbers. Amazing.
I go for my tests. The techs are funny once they realize I've had the Painful as Hell test done. It adds an aura of respect and they tell me their test is nothing if I've gone through that. So, MRI, CT and PET scans probably would have freaked me out but I started with the worst first and it gives me a badge of honor among the radiology techs.
I talk to Nurse Dynamo every few days about something. She's great. So, the scans are clear, we do a happy dance, and then on to the trial. I need blood work before the trial to get a starter level for everything. Ok. I'm getting over my fear of needles and can even look at my hand after an IV is put in. So, off I go for blood and EKG. The woman comes over with...wait for it......24 vials to draw. I can feel my veins shrinking already. It took about an hour because my veins kept quitting. Hot towels, squeezy ball, a second nurse's hand......it took 4 veins to get all of the blood because they quit or rolled. In the end, they got the last 6 vials from the base of my thumb. (yes, you read that correctly. Yes, it hurt, and I had to stay really, really still)
The next day I start treatment. No, it is not chemo or radiation. It is called immunotherapy. My immune system is going to be trained as a Special Forces unit to seek and destroy cancer cells in the body. I have a meeting with my doctor, we go over stuff and Nurse Dynamo makes sure I have all of the paperwork in order to go downstairs for treatment. I am getting the higher dose of the unpronounceable drug, affectionately called "Ippi".
I sign in and am told to go right in. Blank stare. Then the woman says "First time?" and walks me to where I need to go and introduces me to the woman who will be giving me treatment. I am taken to my own little room with a glass wall right in front of the nurses station. My room has a bed and settle in for the next 4 hours. I almost pass out getting the IV in but after that I am good. I get regular IV for a while until the pharmacy gets my drug ready (each dose is estimated to cost 30 grand. Covered by the trial, thankfully because it is not covered by insurance). Then a woman comes around with a cart offering me lunch. (How nice-they take care of everything) I get a pile of food-sandwich, fruit, drinks, chips, dessert and she's off. Then my drug is ready and they set up it's IV bag. It takes 90 minutes to infuse then I need an hour of BP checks and observation. I settle in with my Kindle to read Inglath Cooper's book. I am really relaxed and feel good. The nurse checks me a lot because I'm one of the few who got the higher dose and as a first timer, they were worried I'd have problems. The time went quickly (forced down time works wonders) and my BP was really, really good when we were done. I left around 3:30.
During the treatment, Nurse Dynamo checks on me as well. One mean side effect of this drug is Diarrhea. Wonderful. I have not had issues with that-I have other side effects-fatigue, loss of appetite, and nausea. Anyway, she gives me a handout. I have to keep track of when I go to the bathroom assign it a number (hard to do with auto flush toilets-jut sayin') and keep track. I also have a check off chart of questions. I guess they tell you these details while you are hooked up to an IV so you can't easily run away. Don't get me wrong, I had been fairly warned multiple times that this was a major side effect. This was not the first time I was hearing this but it was the first time I saw what we affectionately call "The Poop Chart." I'll end today's entry with the visual of the chart for you since people have mentioned they want to see the chart. I'm in trouble if I have a lot of #5s and #6s. :)
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