BMT and psyche

[Eva's daughter]

Hi everyone,

It's been a while posting on here. Mum is scheduled for a BMT on the week of June 12.

She has done 6 cycles of vidaza and while she seems to have coped with them quite well, she has been getting colds and infections in between. She has finished the vidaza now and has just under a month to prepare for BMT. My worry is that she is very low emotionally at the moment and I am wondering if she stays like this, if it will impact the procedure.

She is currently having platelet infusions once a week.

Is there anything I can do to lift her spirits?

[DanL]

I am really sorry to hear about your mother's low point. I recently read a passage from a book by Viktor Frankl that speaks about our ability to deal with and overcome hardship, especially when there is not a pre-defined end in sight. The people that survive seeming impossible situations tend to have one thing in common - they have a reason why they must succeed - whether it is to complete the next day's job, to go on the trip of a lifetime, to see the children or grandchildren grow and get married, or simply to feel better and challenge themselves toward that goal.

I know that this focus has really helped me - I have three younger daughters and a wife that I love dearly. I could not bear the thought of not waking up to them and seeing them grow up and grow old. I have to survive each and every day, get better each day so that I can live a happy and fulfilled life and to some extent, even enjoy the difficult times, like after a terrible fight, or a bad day with the teenage daughters - I always want to see what will happen next, and find these negative events fun, and a chance to be introspective and view life from an entirely different point of view. Teenage behavior becomes amusing instead of challenging. It brightens my day even when things are at the worst (from an outsider's perspective)

I hope that you will be able to help her find her why - gently - but definitively. If she has a purpose, she will come out of the negative mindset and will succeed.

The other piece -keep moving. Don't let pain or discomfort slow her down. Acknowledge the challenge, give it wide berth, but do not let it win. Refocus on the goal, even if it is only to walk up and down the hallway a few times.

I wish you and your mother strength, luck, and fortune.

[Eva's daughter]

Thank you DanL,

My Mum has always been the person to do for other people and I think she finds it tough when she can't.

She certainly has a lot to live for- 2 little grandchildren who are now pushing 2 years old. She is inseparable from my son and has been from day one! They are best buddies. If there is anything that can pull her through, he can!

Went to see to bone marrow doc today and came out a little more positive... not looking forward to the days before zero. The chemo sounds horrendous.

She is trailing a new drug too, one that is usually used for rheumatoid arthritis, apparently it can help with the G v's H.

Thank you again for your comforting reply. Mum goes in on the 14th of June now...

[DanL]

Good luck to you and your mum. I am not sure about everybody else, but the worst time for me was actually days 0 to 7. The chemo along the way was not great, but was tolerable. It was when the ANC hit 0 that I felt the weakest and started experiencing some of the chemo related side effects.

I am curious about the trial - it sounds like maybe rituxan for the anti-gvh prophylaxis?

Dan

[bailie]

One note, there is no pain with the transplant process, mostly just being tired. Days -4 and -5 are not much more than just putting in time of reading, watching TV etc. I noticed Days -3 to zero as being tired. The more support she gets the better. I had daughters that stayed 24/7 and that made a huge difference. We wish you the best.