Thursday, September 9, 2010

Countdown to Transplant

We had the Family Conference this afternoon. Ron, Kelly and I met with my transplant doctor, a social worker and a data collection clerk. Dr. W had already told me that much of what he would talk about was the "scary stuff" that probably won't happen, but it is necessary to discuss it just in case it does happen. I warned Kelly (our daughter) that he would talk about that kind of stuff, so she would be prepared to hear it and not get scared. She did great, and asked some good questions to be sure she understood all that was going to happen. When we left she said, "I'm just glad I didn't burst into tears in the middle of everything!" :o)

Dr. W discussed the side effects of the high dose chemotherapy, how it could affect my organs and my cells, the possibility that it could damage cells which could cause other cancers in the future, the possibility of having to go to the ICU, what would happen should I need endotracheal intubation, that I'll probably have a reduced appetite and maybe sores in my mouth, whether I have an advanced directive, etc. etc.

It turns out that I'll be in the hospital much longer than I had anticipated. The bone marrow transplant unit counts the days like this: the day I receive the transplanted stem cells will be Day 0. So tomorrow will be Day -6, Saturday Day -5, Sunday Day -4, etc. Day 0, transplant day, will be a week from today, Thursday September 16. The next day will be Day 1, Day 2, etc. They will keep me in the hospital to monitor me until my cell counts begin to go back up, which normally happens around Day 24, but can be as long as Day 30. :o( I hate the thought of being in the hospital that long, but I'll probably be there for at least 3 weeks, maybe longer. I may be able to go out "on pass" for a few hours or overnight sometimes, if I am doing well. I'll likely get red blood and platelet transfusions during the first couple of weeks after chemo, and there are even risks with those, especially with no immune system.

It all sounds pretty awful, but what I am dreading most of all is that I won't be able to see my grandchildren for so long. :o( Reece stayed overnight last night because I knew I wouldn't be seeing him for awhile. I didn't know it would
that long, though! I could just cry when I think about it. I told him that I would call him, though. I'm so glad our other grandchildren were here over the long weekend!

This is going to be the hardest part of my treatment. Dr. W said there were 3 options. I can stop now, and the cancer might not come back, or it could come back in a year or two (likely with mantle cell lymphoma). I can stop now and get Rituxan (chemo) every six months or so, to "beat it back," and maybe get a few more years. I can go ahead with the stem cell transplant and have a better chance of it not coming back for a long time, and possibly curing it. I am definitely going for the cure.

So, dear ones, I need your prayers more than ever! Please pray for a complete cure. Please pray for me and my doctors, nurses and techs. And please, pray for my family that they won't be afraid and worried, but will instead be comforted and at peace.

If you'd like to pray the Novena to Blessed Stanilaus Papcyznski, you can find it
here (thanks again, Angela). I will consider it a miracle if I am cured of mantle cell lymphoma, because my doctors keep telling me that it most always comes back.

St. Peregrine is the patron saint of cancer, so I'd appreciate prayers for his intercession, too.

But most of all, please beg Jesus for His Mercy for Sharon, a sinner in need of His love and forgiveness.

Thank you so much, dear readers! I will pray for you, and offer any suffering I may experience during the next month for your intentions. Hugs!


Anonymous said...

Sharon, I'm praying for miracles and I know that you will face this challange with the same strength that you have shown all through this trial. I'm so proud of you. You will continue to amaze all of us I know. I love you so much,


Sarah Oldham said...

You are in my every prayer - you and your loved ones. God speed your recovery and keep your strength!

Kori said...

Aunt Sharon,
You are so brave. I am praying for miracles too. This is so 'divine' as Steve tells me often about things that I have no control over. So, just trust God that he hears your prayers & is answering them. We love you so much.
Love, Kori, Steve, & Jonah

Kalona said...

Dear sandi and Kori,
thank you so much for your love and encouragement. And for your prayers! I love you.

They just started the first chemo. So far so good.

Posting from my phone, so will keep it short. Hugs!

H F J said...

You know you always have the children and my prayers.

With His love,

Sarah Oldham said...

keeping you and yours in prayer.
i tagged your for a simple meme but do it if you want or when you can - I don't care (you know me well enough to know no offense is taken if those things go undone). Anyway, you have a lot to do and think about these days.
Love and hugs and prayers, and Aloha,

Jennifer Mulkey said...

Hoping you are doing ok today after your first and now probably your second chemo. Praying.

Dawn said...

praying for you and for your family as well.