Tough Decisions are Really...Tough

Again, I want to express my gratitude for all of the support John and I have gotten from so many.  I started to respond to the people who had posted comments on this blog and quickly realized the task was more than I can handle.  Until I come up with a manageable system, I must resort to this general THANK YOU to all of the people who have posted comments, called, sent cards, prayed, written emails, raked leaves, and provided meals.  Even more have asked how they can help.  It means so much to us we get weepy thinking of the generosity of such wonderful people.  So, to all, we say...

Thank you

&

We love you!

Decisions, decisions...

I have an entourage!  Peeps.  Homies.  Roadies.  It's true.  I'll explain.

Since August it feels like I have spent more time at a medical facility than at home.  Often I'm not even asked to present my insurance card.  Instead, they say, "Any changes since yesterday?"  Protocol requires that I give my name and birthday for just about everything, a rule I support, and now I'm kind of expecting a ton of birthday cards when my big day rolls around.

During all that time spent at Camp Dracula and Club Med, and now at Chemo Bay (Mankato Clinic Infusion Center), we have not had one bad experience with any of the personnel, from medical staff to food service.  Not one!   It's almost uncomfortable, if it weren't so comforting, to be cared for in such a thorough and thoughtful way.  I am blown away by their kindness.  One might say it's their job to be that way.  Well, yes and no.  For example, an aide might come in to change the bedding, do it and leave.  That's her job.  She doesn't have to linger, smile, wonder what else she can do for you, then with a twinkle in her eye ask what flavor slushy she can bring you.  Simple example, but representative.  

One day during my last Club Med stay, a tiny sprite of a woman popped into my room, announcing that she was the hospital social worker.   After a brief moment of bewilderment on my part (weren't my kids too old to be taken from me?), the young woman, Josie, charmed her way into my heart.  Before long, I agreed to a meeting with her colleague, Lacey, who would be happy to tell me all about the Palliative Care Team (PCT) of which she was a member.  Well, OK!

It went down mostly like this:  We met Lacey, a soft-spoken, kind-hearted young woman, and before long we were hooked.  Well, of course I was interested in palliative care--who wouldn't be?  Advocacy, help with decision making, a shoulder, an ear--who could turn down an offer like that?  Lacey arranged a meeting with the rest of the team: Ellen, oncology nurse; Dr. Cory Ingram, Phyllis, nurse practitioner.  At that meeting, in addition to getting acquainted, we discussed a situation that had presented itself a couple of days earlier:  Should I explore a bone marrow transplant, an option I had unenthusiastically left open when I was first diagnosed? 

What happened was that Dr. Tin, the infectious disease specialist who had been consulting on my case (because of the fevers), dropped in on me--John was still there--at about 10:00 p.m.  We had not yet met Dr. Tin, but had been told by many that he was a good person to have in your corner.  So, this guy marches in, introduces himself and wastes no time barking, "Why aren't you going for a transplant?  You are healthy in all other respects and you are wasting time the longer you wait."  Who is this man?  My head was still wrapped around the possible effects of a powerful antibiotic, Vanco, which had been started that evening (Dr. Tin's orders).  Vanco's the drug that would make me itch and turn my skin red.  Oh, and it could damage my kidney.  I'm thinking, go away and don't come back until you've got a good idea.

By the time Dr. Tin left, both John and I felt blessed to have had the conversation.  He had helped us see that EXPLORING the option of a transplant was a no-brainer.  No harm in being evaluated--might get rejected anyway.

Then the PCT weighed in.  The next step would be to gather all of the principals, including my children, to ponder the pros and cons.  They were all there: the PCT; Dr. Kumar, my oncologist; Dr. Lal, the hospitalist who was my doc while I remained at Club Med; John, Christopher, Megan and Rebekah (by phone, which didn't work out so we talked later).  After a thoughtful discussion, I made my decision:  I would pursue the transplant option.  

We will head to Rochester on Nov.10 for the screening.  We were told we would know pretty quickly if I even qualify.  If I don't, well then, it's back to the status quo: Vidaza (chemo) and transfusions.  If I do, then I'm in it for the long haul.  It's a scary proposition, one I sometimes can't bear to think about, but one I am confident I can face, especially with the support of my family and friends.

My entourage?  If you've read this far into my long-winded entry, you have figured out that my peeps, homies and roadies are all of the players mentioned above.  How lucky I am to be so well cared for!