What I’m thankful for
I’ve been back at home for a week and a half now. Maybe two weeks? I lose track. The days blend together. I’m resting a lot by staying in my bed in my pajamas and watching movies. The bedroom is also the warmest room in our rental house so I tend to stay under the covers with my knit hat on because I’m freezing most of the time. Jeff comes home from work and puts on shorts because he says the house in an inferno. I still have flashbacks to ICU and I was shivering cold there and I still haven’t fully warmed up. The docs say that the meds and weight loss make me feel cold.
My pancreas has not fully recovered but I am getting stronger. I still have a hard time digesting food and I have to eat small portions. I can’t digest any kind of wheat flour and potatoes are rough too. The doctor prescribed pancreatic enzymes to take orally with food to help with the digestion. I take 3 of these ridiculously expensive little pills that smell like paint with each snack and meal to help absorb nutrients. I’m not putting muscle back on as quickly as I have in the past even though I’m doing physical therapy because my body isn’t absorbing nutrients and fats. I’ve read that acute pancreatitis can lead to chronic pancreatitis but I’m really hoping to get better soon. My doctor appointment is next week and she sent me home at the last visit to gain weight and increase the protein levels in my blood. Gaining weight is hard when you can’t digest carbs and fats.
Although I am frustrated with my slow progress I have to remember that it is rare for a person to be in ICU as sick as I was and then two weeks later be out walking around the block. I think of my neighbors in ICU that will not make it back out. The 17 year old boy with a brain tumor who was moved to a long-term care facility. The 70-something year old nun who communicated only in writing who was told that her cancer had become uncontrollable. I heard all of this from my spot stuck in bed.
And I think of my father-in-law, Dave, who as of now is at a hospice center. The first dose of chemo did not get rid of the leukemia and he has opted out of further treatment. He is at peace. I have almost taken it for granted how successful the chemo has been for me. I mean, one of the chemo drugs may have permanently messed up my heart and another drug my pancreas but the leukemia is in remission. That doesn’t always happen.
Moving forward the next step is bone marrow transplant. After the pancreatitis what was a gray area and difficult decision has now become completely clear to all of my doctors. I will not be able to tolerate 2 more years of chemo considering the damage that the specific drugs have done. We need to take the option for transplant for a cure. I have a donor who is a 100% match and may or may not (but probably) live in Germany. The doctor is currently scheduling around the holidays with the donor. I need to get stronger and they need to schedule the donor’s surgery and no one wants to do that before Christmas. We are likely looking at the last week of December to check into the James for my 6 week stay unless he wants to do it sooner. I’m choosing not the think about the risks and all the horrible things that could happen with the transplant. Lots of people do fine and there is no way to know. Who would have guessed that my organs would react so strongly to chemo? We just have to keep doing one day at a time. Today I have physical therapy to continue getting stronger and I was approved for a dentist appointment. Yay! I’m way overdue for a cleaning but I wasn’t allowed. My blood count levels are almost normal so I’m using this break as an opportunity to get these things done.
In my downtime I sit on the bed with my kitty and do my nails.