Resources In Rochester N.Y.

Food

Rice Pudding, Rice Cakes, Pudding, Applesauce, Jello, Pasta, Popsicles- I developed mucositis like most do therefore I did not eat much during the BMT. Water I tried several brands before I could find one that I could drink without having a after taste. You have to try to eat and drink something. Work with a nutritionist. 

Daily Routine

I would try to stick to a daily routine and force myself to get out of bed even if it was to move into the chair. There were a few days I couldn't get out of bed but moving a-little is good and doing something is even better otherwise you will go crazy in that room. Get up and walk when it is safe. There will be days you can not and that is ok. 

Daily Inspiration

My sister sent me a daily inspirational jar which I now give to patients. Each day I took out a inspirational quioate and tapped it to the wall. It was something to look forward too and somedays I would stare at one or two to remind me. 

Journals

I kept two which one is about to published. One was daily of what was happening, how I was feeling, the meds I was receiving . This is to keep track and remember in the event you have a reaction. It is also good to look back and read it. The second journal I started was for my family - it was a journal of my childhood, stories about me and future advice. Sounds morbid however, if you ever think about things you may have ever wondered about your parents or family that you have never asked - I have most of it now written down. It was very hard for me to write future advice, however to hit the milestone for when my kids did learn to drive and now I can go back and read that, the sense of grateful is truly immense. 

Physical Activity

Going through Chemo I was blessed enough that I was not sick. I lost my hair, lost a ton of weigh, and had days I was exhausted but my kids were young so they kept me going. I was very active during chemo and worked out and ran a lot. I would run a mile around the outside of the hospital. After the Bone Marrow Transplant that was a different story. My advice is one day at a time even if you are weak during norm chemo. I made a goal to walk to the kitchen twice a day, eventually when I could go outside my goal was to the end of the driveway, then the next mailbox. Keep your goals small and achievable but do not overdo it.

Food

Same as above. My appetite after BMT was barely there. I would at least force myself to have a few bites at every meal. Water is a must. 

Journal

I still kept track at home especially since you have to keep track of when you have to change the caps on your port and cleaning them etc. 

Community Assistance

Use it - your insurance company will offer Case Management, see how they can help you. If you have a caregiver or spouse, they need help. I wish I would have thought about getting my spouse some sort of therapy but when you are in it all you are thinking about is living to the next day. We had a MealTrain that someone organized that was extremely helpful. I did not have to cook dinner for months and while I was in the hospital my family had food and that was one last thing I had to worry about.