It has been a week today since we learned about Kevin needing a bone marrow / stem cell transplant. It’s been a tough one. We got the news last Tuesday at the Toronto Cancer Centre about the transplant and then the very next morning we had to go to the Kingston Cancer Centre for another visit with Kevin’s regular Oncologist/Haematologist and more tests. The CML expert, Dr. Lipton, also recommended that Kevin try a new TKI (tyrosine-kinase inhibitor) now available in Canada, Bosluif (Bosutinib) -that will hopefully slow down the progression of his leukemia and have less severe side effects than the Tasigna (Niotinib) while he waits for his match. So we have been dealing with paperwork for that too on top of trying to get all of our affairs in order before we need to relocate to Ottawa.
Kevin said that the past week has knocked him on his ass. That is putting it mildly because he has been so tired, weak and in so much discomfort from pain, chills, sweats and twitching that he has a very hard time staying awake and being active for any length of time. But he still has his sense of humor! Every time he tells someone that he found out he has to have a “BMT”… he says, “And it has nothing to do with bacon.” Kinda lightens up the mood right off the get go. That’s important because it’s a pretty difficult thing to talk about. When you initiate humor right off the bat, it really helps. I know not everyone can do that, but I’m proud that he can.
Keeping Kevin positive has been difficult, but not impossible, which is a good thing. There have been many “why me” moments and times when he just wants to curl up and die, but instead he keeps trying to make the best of every day. As his caregiver, I realize the importance of releasing feelings of sadness, anger and negativity, so I allow him to do that, but I refuse to allow him to wallow away in a sea of self-pity. Not on my watch! People who do that just make it really difficult for others to support them. He is less optimistic than he ever has been and rightfully so, but I keep reminding him that he can’t give himself a death sentence. Like the doctor said… “It’s not going to be easy. But there is an easy way to deal with this and a hard way. The easy way is to just keep taking the TKI’s until they stop working, and they WILL stop working… sooner than later. OR, you go through the transplant and fight and possibly be cured.” There is no question that the transplant is the way to go. Kevin is prepared to fight and fight to win, but he just wants to get the ball rolling. He doesn’t want to torture himself with thinking and worrying about the leukemia progressing.
We have managed to get lots done. We have had to break the news to our family and friends. We have taken care of our part of the ridiculous paperwork for the new chemo drug they want him to take, but we still need to deal with the insurance and drug companies and then find out how they will get us the drug. It’s all a bunch of BS if you ask me. If someone NEEDS these drugs as a matter of survival, they should be readily available within a matter of DAYS, not weeks…. BUT not with a drug that cost THOUSANDS of dollars… Nope! Because it’s MORE about the money than the wellbeing of the patient. Anyway, I could go on and on bitching about that stuff, but I won’t. I just hope that everyone gets their act together soon so he can get on it.
I had a meeting with Lexie’s principal and teacher. They are totally on board to work with our situation, which is awesome. I will home school her for part of the three months that we are away, but she will also stay with her father here in Kingston for part of it too. They are even making sure the school counsellor checks on her frequently when she is at school, just in case she wants to talk. We have been very honest with Lexie and tell her the truth about what is happening and we answer any and all questions that she has.
We had Kevin’s Powers of Attorney executed, which is something I have been saying NEEDS to get done for months and months, but kept putting off. I worked for a law office for many years and POA’s are super important in these situations. Otherwise, you need to deal with the court system, which is a huge expense and headache. Trust me, if someone is chronically/critically ill, you need to have these documents in order.
I am now starting to concentrate on getting our house in order. Purging stuff we don’t need/use and re-organizing. If there is one thing cancer has reinforced is my belief that if you want less, you need less and you live more! The most important things in life are NOT things.
Hopefully I can get everything I want to do done before we get the “WE FOUND A MATCH!” call! If not, I’m not going to stress too much about it… but I guess I should stop typing and start working! I am working on a special project/challenge that I hope to have completed within the next day or two. I will let you in on it soon. =) Until then we thank you so much for following our journey and for all of your awesome support. We are truly blessed.
Have an awesome day!