And more bad news.
Dr. Brooks returned this week and was ready to see me. I had decided to go to the appointment alone and have Milo meet me when they started the chemo so he could go to work; one of us has to have some semblance of normalcy when it comes to working. Dr. Brooks immediately asked where Milo was and it made me wish he hadn’t needed to work. The office visit can be very lonely sometimes, especially when there is news.
Dr. Brooks opened my PET scans on his computer to help me visualize what he was about to say. Unfortunately, it wasn’t what I was hoping. While my pancreas wasn’t the starting place for my tumor (yay!), the cancer is most definitely a stage four and has pretty much infiltrated other parts of my body. There are lymph nodes in my pelvic, abdominal and thoracic regions all lit up like little red Christmas lights on the PET scan, which means the cancer is there. On top of that, two smaller nodules (small tumors) have been located on my lungs (so that’s why I’ve been coughing like crazy). Here I was hoping for a simple “We were right, it’s all in that right upper quadrant, let’s fight it!” and instead I received a “Well, this little bastard really wants a battle, doesn’t it?” Dr. Brooks still seemed optimistic, though, and then handed me the CD-rom with my scan to keep. I told him I wanted it so I could imagine those red spots going away. The scan did reveal something that is good in a roundabout way. The tumor in my liver has a large area of necrotic tumor inside it, which is what it gets for growing so large that it can no longer sustain itself. Ha!
We discussed chemo and starting it immediately. He said we’d be using cisplatin and gemzar to treat my cancer. Cisplatin is the “go to drug” for cancers of the biliary tract. It can possibly make me lose my hair (though it can be as minimal as shaving my legs less often), will almost certainly make me nauseous, mess with my taste buds, and needs to be given with a lot of fluid and a diuretic because it can be toxic to the kidneys (joy!). Gemzar is milder and has been used to improve quality of life. It will mostly make me feel like I have the flu and need more sleep. Symptoms, however, shouldn’t last more than a few days. I’ll receive doses of my chemo for two Fridays and then have a week off; each treatment will last four hours. We’ll redo scans in a month or so to see if the tumor is shrinking at all and redo our plan then. Surgery is definitely not an option for my cancer as a whole since it is so extensive, though we may use it to remove the mass from my liver down the line. Either way, it will have to wait.
He asked me if I had anything I was concerned about and I brought up my dizziness, which has continued almost every night this week. Dr. Brooks assured me he didn’t believe this was a new tumor in my brain (thanks Doc!) but simply vertigo. I was offered a referral to an ENT, which I declined for now, and placed me on meclizine. If that doesn’t control my spells, he said, then he’d send me to the ENT or do a scan to be certain I get better.
As far as my diet is concerned, Dr. Brooks mentioned that while he likes the thought of my cutting back on carbs and sweets, he didn’t necessarily think following a diet was the best idea either. Chemo is dosed based on weight and from last week alone his scale shows me down seven pounds. I did wear pants last week, but even accounting for a clothing difference I lost at least four. My cancer is not considered controlled if I drop weight that quickly, according to the doctor, and if I show up ten pounds under where I was it could mean missing a chemo dose because it would be too high. With my taste likely to change, he told me that I’d lose my appetite and he really needed me to eat things. His ruling: don’t gain a bunch of weight either but definitely eat things I enjoy when I find my symptoms are the worst. Do my best to cut back on carbs and sugar, but don’t stress if I can’t right now. I liked this advice (and not only because it means I can eat chocolate!)
Before chemo could start, he wanted me to meet with Bonnie, the financial counselor. She gave me the best news of the day: my chemo was covered one hundred percent! All I have to pay is my office visit co-pay. When she showed me the cost of chemo treatments the insurance would be billed for, I nearly fell off the chair. No wonder people without insurance end up in so much debt that they file for bankruptcy.
By time I finished with Bonnie and settled into my chair for chemo, Milo had arrived from work. Neither of us watched as they accessed my port-a-cath; we didn’t use the numbing spray this time. It hurt, but not as badly as I expected. Carla, my nurse for the day, was amazing about explaining everything she was doing. Not just when she accessed the port either. When she hung the bag of IV fluids, she educated us on chemo and all the fun things we hadn’t thought of like having sex together (definitely use a condom to protect him!), how chemo kills off the cells that reproduce quickly so dental work/cleanings are off limits, constipation becomes a huge problem so treat it and what I could use to treat other side effects. Did you know that dexamethasone, ativan and Benadryl can all be used to treat nausea?! I didn’t and it just fascinated me to no end. She told me if I ever wanted to read any of their texts they had, she would happily give me them during my treatments. I might have to take her up on that someday.
The treatment itself wasn’t really that bad, lots of sitting with cold fluids running into my port, so I was thankful they provided blankets. Even before the diuretic, I was up to the bathroom at least three times from all the fluid. Once the diuretic kicked in, I was almost sorry that I even sat back down. I swear I was in the bathroom every twenty minutes! It was driving me crazy. Milo was great about helping me to the bathroom and tucking me back in when I returned. It was nice to have him there, but I felt so bad that he was stuck sitting around being bored. It wasn’t exactly an entertaining situation.
After chemo, we went to CVS to drop off the scripts for my new medications. Once again, my prescription drug plan proves that insurance can really suck. They wouldn’t fill my anti-nausea medication unless it had a prior authorization, which we didn’t know. By time I called the doctor to get them to put in the authorization, CVS Caremark was closed for the weekend! I was told to either pay for it myself and they would reimburse part of it (which of course could take up to a month) or suffer. Thankfully, Carla had taught me about Benadryl so I can get through the weekend. Here’s hoping it works as well as Zofran!
And now: An open letter to my cancer
I see you there, growing and moving into places you don’t belong. Go to hell! I’m not going to let you take over my body. It is my body and you are done feeding off it. I won’t allow you to win, so I hope you came prepared for a hell of a war. No, on second thought, I hope you didn’t. I hope you believed this would be some kind of cake walk so that when I open my can of whoopass, you are unprepared. I will take you, my enemy, and you won’t even see it coming. You’re going to lose; I have far too much to live for.