Brian came home today. They started his chemo late monday and it finished at dinner time tonight. He did very well....some acid reflux from the steriods, but otherwise, he's feeling pretty good. We're going to head to Costco again tomorrow for some decent quality protein.
( We still can't get any decent meat up here...I plan to take up hunting one day soon, in fact had planned on learning how to hunt and prepare my own deer this summer, but it won't be this summer now...)
For now....He's going to have some days where he's not feeling very good, but we expect that. We just make sure he eats good protein and lots of fruits and veggies. I can't stress enough about how I feel diet did before and does now play an important roll in how he does. and the steroids..well..he'd eat the walls if we let him.
When I got to the hospital today, I was just amazed...the staff had left some information for me about Brian's medicaid which kicked in today...and his nurse Mary, had even gone to the pharmacy and filled his prescriptions for me. How kind was that...I really was simply touched by how helpful and caring she was.
I have been really impressed all along with how nice the whole nursing staff is. They are so kind and always interested in how they can help, even asking if they can do something for me. I have really been impressed all along at Lehigh Valley Hosp. and I certainly have seen too many.
Because Brian did so well with the previous round of chemo, we are getting a break. We don't have to do the M,W,F bloodwork. We'll just need to go to the clinic on Friday for the neulasta injection to help keep his white cells up, and then get labs done before the NADIR visit in probably 2 weeks. Then we have all the pre transplant tests on 5/10. Then an oncology visit on 5/17. I'll update the calender shortly.
I want to thanks my great neighbor Jim..again...he helped Scott several times this week with my car, and picked up Steph from work last night while I was at the hospital with Brian. (yes, we are once again down a car)...I told you before...cancer doesn't care if your cars are old and you're not ready to deal with all this crap...it doesn't care if you are old, or young, rich or poor...not even if you are hot or cold...some things make dealing with the stress easier obviously....and I know it's hard sometimes for others to remember that life and bills and chores don't simply stop because all of a sudden you have a giant medical crisis to deal with. It just is how it is.
I know that many days this blog sounds like I am tired, and bitchy and one step from a cliff....make NO mistake...that is exactly how it is. When Brian had cancer before..I took the high road, and wore me to the bone. Now you get the truth..the hard, naked miserable truth about how it is to deal with a life changing event...not once, but now twice.
I haven't killed anyone and my husband still loves me...trust me, we're doing better then most.
Now that I have the medicaid number, tomorrow aside from the 200 loads of laundry I must do, I am going to be writing it one that gargantuan pile of medical bills and hoping for retroactive coverage.
we are still facing tremendous costs for transportation as well as all of the meals I will have to eat when we go to Hershey...for however many days I am out there. I know it will be at least 3-4 weeks. It looks like my accommodations will be provided at this point however. Or I can stay in the room with Brian.
I read through the bone marrow transplant book provided by Hershey and apparently the bone marrow website has some suggestions for fund raising. If anyone is interested in volunteering to help, let me know..I don't see it as a practical thing I will be able to do. I barely have time now to deal with everything.
we are considering a combination type weekend where we could take Brian to the Shawnee Celtic Festival and those of you who would like to visit him could before transplant. We could plan to meet at the festival. It would give him something fun to look forward to before the transplant procedures start. (And make no mistake, the transplant procedure is dangerous with many life threatening complications)
And at this point we are not considering any visitors for some time after. He will be tired and it will take his immune system sometime to recover. ( if fact he may have to consider receiving a lot of his childhood vaccines again about a year after transplant) He's not keen on visitors anyhow...remember, he's very private and hates when people see him at less then 100%. (of course Anut Deb is an exception...and she has seen him at his very best...and worst).
We can't accommodate anyone at the house though, so if that is something that interests you, I'd plan reservations early. It gets crowded up here once summer gets rolling. Places to stay.
Brian did pose for a few hospital photos to share...will post those next.
Oh yes...Brian knows that the best plan for his immediate future following transplant will be to rest, but he's concerned about sometime getting a job, and he loves languages, so I have added two new items to his want list. They are educational language programs, he is thinking about trying to work from home doing translating services. I support this thought process of his, and I think it is both a practical and realistic goal.
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