Wednesday, July 13, 2011

And you were so scared! I told you and told you that you had nothing to be afraid of, but you wouldn't listen to me.

It's THAT day, that dreaded day--a 4-hour consult with the BMT team.

Dale picks me up from work, and I walk very slowly towards the van. Standing a few feet from the passenger side, I yell through the open window. So, if I walk as slowly as I possibly can, does that mean I'll never get to LDS Hospital, and we don't have to go? He's not buying it. But I DON'T WANNA. Does acting like a 3-year old help? Probably not, but I do feel better after having expressed those childish fears.

Wait for valet services to park the van, walk slowly inside, find the elevators, then make our way to the top floor and through the maze of hallways and corridors to the BMT outpatient clinic. There are three other patients in the waiting room--all with bald heads. Was expecting that.

One older gentlemen is complaining loudly. "Stupid transplant process was the worst thing I've ever done. About killed me, and I kept praying that [God] would take me." Thank you, ever so much, for spreading such optimism right before we talk about my own battle. Isn't there a filter on what you can say in front of new patients? La, la, la, I'm not listening.

Yay! No more grouchy pessimists as we head for an exam room. Char is a radiant, upbeat PA. She's carting a 5" binder that's bursting at the seams. "Is that all for Trisha?" Dale asks. "Yes. I haven't read all of it; but I am familiar with the important parts. You made it in too. There's mention of your knee surgery."

After a detailed review of everything that's happened in the last 2.5 years, we do a quick neurological exam.

Hurry up and wait for the next part. I'm so anxious about what we're going to learn, I can't sit still. Maybe there's something distracting to read in here. A quick glance reveals an old National Geographic, Golf Digest, and four periodicals related to cancer. Not!

We're finally ushered through back hallways and mysterious doors to the large conference room. Because of some emergent happenings, the director can't meet with us today and neither can Rachael--our friendly coordinator from 2.5 years ago. Instead, we get to meet with Dr. Mitchell, a different coordinator, Ladee, and a coordinator in training.

Oh good. I like them all--very personable, funny, and warm. So lay on the bad news guys. What's the plan?

Another round of chemo next week, then a follow up PET scan. BMTs work best if I'm almost in remission so we need to see good responses from the chemo. If it's not as good as we're hoping for, another round of ICE chemo might be necessary.

Specific prayer of the day: That my body responds well to the chemo, doesn't need another round, and the bone marrow transplant can proceed without delays.

Need to meet with my cardiologist and pulmonologist before the transplant. We'll schedule some pulmonary function tests at LDS so I can take them to Dr. Mike for comparison with former results.

If everything looks good at that point, we'll meet with the BMT team once again just before admission. Here it comes!

Plan on being admitted for four weeks. Could take only three, but it's better to be prepared.

First day, we'll remove my current port and insert a triple lumen central line.

Immediately I remember the Frankenstein-ish triple lumen IJ catheter from the stem cell collection process. This could be a deal breaker. I cannot deal with that thing in my neck for 4-6 weeks. I could barely handle it for five days!

"No, no. This will be much like your port but have three access points so that medications don't mix. Not in your neck, in your chest." One hurdle down.

Then, six days of BEAM chemo. I can get much stronger doses of chemo as a transplant recipient because they don't have to be concerned about destroying my bone marrow. They're going to rebuild that with the transplant. It's intense therapy that will zap my strength, but they'll monitor me closely during these T-6 days of counting down.

One day of rest, then it's day zero and probably two days of transplanting my stem cells in a blood transfusion-like process.

It takes 2-3 weeks before the cells start fully grafting in, so this is a critical stage where I'm monitored very, very closely. I'll have no white blood cells and very few platelets and red blood cells, so regular blood transfusions are very common.

I'll be feeling stronger as my cells are reproducing and the stem cells are grafting in and can prepare to be discharged to outpatient care for two more weeks. If there are no hiccups, I can gradually return to work and regular daily activities at that time.

It takes a year for a body to fully recover, but there's usually a 50% chance for cure. They're estimating my own personal rate is around 70% due to how responsive my body has been to chemo and how well it tolerates it. I'm slightly disappointed. I like Hodgkins's 97% cure rate, but 70% is probably worth the risk.

This is a high-risk procedure and my risks are higher with everything my body's been through. Oh no! I don't want to hear this next mortality number, but Dr. Mitchell plows boldly ahead. "We're guessing your personal risk is about. . ."

No, I don't want to hear this. I've been praying that Dale and I would know if we're supposed to proceed. We know we always have a choice. After all of the horror stories we've heard about transplants, maybe it's time to roll the dice and take our chances on the chemo curing me. My entire life, I've been counseled countless times in blessings to always heed and follow the advice of my doctors. However, I know that the Spirit trumps everything and everyone.

If she tells me my risk of death is above 50%, I'm not sure I'm going through with this.

"5%." Five percent chance of dying? That's all? No problem! Besides, if Heavenly Father wants to call me home, how would I stop Him and why would I want to? I can live with a 5% death risk.

Okay, so what about the horror stories?

Being in strict isolation for up to six months? "Just while you're hospitalized and for the two weeks after. When you're in the hospital, anyone can visit you at any time, as long as they're not sick."

Attending church? "Yup, that's fine as long as you wear a mask to protect yourself from unseen germs and infections."

Eating raw fruits and vegetables? "No problem. Just wash everything very well and no grapes. They mold from the inside out so you can't tell if you're eating germs until you've already taken a bit. And avoid public salad bars."

Are you kidding me? That's it? I can do this. I know I can do this. It doesn't even seem that hard now. What was I so terrified about?

Dale sums it up perfectly as we walk up, "Well, I definitely feel better coming out than I did going in."

Whew!