First, I have to tell you that I am watching a gorgeous orange moon set over the bay. Life ain't all bad.
I was really looking forward to day one of chemo. But, could I sleep the night before, of course not. I had servere stomach cramping with fever. I wasn't a happy camper. I was up all night in pain. And if the fever didn't go down, they wouldn't start treatment. Geoff suggested taking Tylenol and eventually the fever came down but I still felt like crap.
Got myself together and made it to the clinic on time. First to the vampire room, where they do an excellent job. It's always good to have someone who knows what they are doing approach you with a needle. Then on to conference with the oncologist. There was more talk about the drain and the new approach. Since the bilirubin number is now way too high for the super chemo that will wait till later. When is later? I must admit, I'm a bit worried and somewhat scared. If the drain was still in, I'd get the super cocktail and maybe the whole thing would work quicker. Now I have no idea. The doc is big on quality of life - which, for me, is so much better without the bag, and the chemo isn't as harsh. Not that it stopped him from the litany of things that may or may not happen and what you do to prevent some of them. For example, Nothing COLD - don't touch anything in the fridge, don't eat anything cold, don't drink anything cold and whatever you do don't go out unless you are bundled like an eskimo. That Antarctica jacket just might come in handy. Apparently, this chemo can lead to neuropathy of the extremities and can get pretty servere. Then, there is the Magic Mouthwash - really just baking soda and water. Rinse as many times as you can a day to keep the mouth sores away. It goes on from there but only gets worse.
I did tell the doc about my tummy. No more tylenol. It doesn't play well with the liver. He prescribed pain killers - originally wanted to give me oxy which I really don't like so we settiled on tramadol and prescribed pancreatic enzymes to help with digestion since my pancreas isn't doing it's job. Hopefully, this will help with the gut.
From there it was off to the "Infusion Room". Certainly not your TV's chemo group where they sit around in a circle play cards and tell jokes. Nope. This huge room is lined with individual cubicles each having a window, lounge chair, guest chairs and a tv. The nurse was extremely nice and there were more instructions. As with every new hurdle I have encountered since this journey began, the tears starting coming. It's like my brain is screaming saying "What are you doing here? You don't belong here - RUN." Eventually, I calm down when all the tubes are in and the drips are dripping. Yes, this is my life now.
I was also shocked to find out that this is going to take around 2 hours give or take. What?? I thought I was getting my pump and was out of there. Not so fast. First is a 15-20 minute drip of supercharged antibiotics. Next, is the first chemo drug given with the supercharged vitamin drip. That one takes about an hour and a half. Then you finally get the pump filled with the 2nd chemo drug. Which, by the way, is not a bottle but a box mechanism that weighs a little over a pound. You get a lovely fitted bag to carry it in or even where around you waste. Much easier to deal with than the bag. And since it is solid, I can put it in between us in bed so it doesn't fall off - don't want to lose another tube. We have named it "Baby"- gender fluid, of course.
You are allowed to get up and go visiting. In fact, the guy next to me, who arrived dressed in a full bike kit from head down to his biking shoes, spent most of his time with his chemo buddy at the end of the line. Geoff was chomping at the bit to talk to him but he wouldn't leave his girl. We should see him again on Friday for the pump removal. This guy is in his 60's and rides his bike from Lakeville (approx 17 miles) to and from chemo! How do you do that? I could barely get out of the chair.
After 4 hours, we made it out of the there. Got into bed and didn't wake up until 6pm - when Geoff got me to come down for dinner. "you have to eat". Light dinner of tofu an rice. Not taking any chances. Watched some tv and then went into the bedroom. Tummy still sore but I wasn't doubled over. I took the Tramadol. It really didn't do much and I never fell asleep. Looks like I might have to go with the oxy if I still have pain. At least I was able to lay there quietly, which was more restful than the night before. And I had just slept the whole day away.
So far this morning, I'm doing ok. Geoff's brother Pete and the other Sue Sullivan came down from Vermont to visit their son in Worcestor. They are driving down here this morning, staying the night and leaving on Friday. We don't see them too often so it should be a good visit. Even if I have to go up and rest, Geoff can get in some quality sibling bonding time. Like they can fix stuff together! They are also crazy Celtic fans like we are and there's a game on tonight. Should be fun. Since I can't shower until the port bandage comes off on the 27th, it's wash hair in the sink again. Most look somewhat presentable.
I will be doing the pump thing every other week on Tuesday starting March 5. If anyone is interested in visiting me there on any given Tues, I think I can have one or two at a time, I'd welcome the company. Geoff will drive me in for the dr's consult but I'm sure he doesn't want to stick around for 2 more hours. Just let me know and I'll check my social calendar - also the time is never the same. It isn't too bad. You get free snacks, the volunteers come around with sandwiches at lunch time - everyone is very nice. Of course, feel free to bring your own goodies if you want.
Love you all. Take care of each other -s
