Wednesday, August 17, 2011

Ah, peace and comfort (and more purple!) in the Mt. Timp. temple. The impressions I have are varied and hard to put into words, but I know that I'll survive the transplant, that not to proceed would be the equivalent of giving up because the Hodgkins would keep coming back--more and more frequently--and chemo would be less and less able to fight it, that there might be some complications from the transplant but I'll still be able to help others and learn and grow myself with them, and that the trials I've had so far have strengthened me and that strength will serve me well through the next few weeks and months.

Okay, we can and will keep going.

The family conference at LDS Hospital is longer than I anticipated and mostly a rehash of what we've already covered. What happens before, during, and after the transplant. What to expect. What the rules of the hospital ward are.

There are a few surprises: no visiting hours, no limits as to who can visit as long as they are healthy and over 14 (but exceptions can be made for age), I can wear my own clothes while there, and that isn't going to be a quiet and restful process in any way.

I have daily goals: walk four times a day for 20 minutes each time (wearing a heavy-duty "pig" mask, gown, and gloves each time), sit in a chair three times a day for at least 20 minutes each time, rinse my mouth every 30 minutes, practice expanding my lungs at least 4 times a day.

All that in additon to normal things like eating (even if I don't feel like it and it hurts to do so), showering, and having vitals checked every four hours--a.m. and p.m.

Whew! Is there going to be any time left for anything else? Why do they encourage me to pack so many things to do if it seems like every minutes is already scheduled for me? And is there a luggage or weight limit to the things I bring in because I've already accumulated quite a stack!

Oh, and there's a glitch. The insurance company and the hospital have yet to sign a legal contract that specifies at what level the health benefits are going to be paid because, while LDS Hospital is a preferred provider for almost everything, it isn't for the transplant process itself. We can't proceed until that contract is in place. So no port removal or central line placement tomorrow. The best we can hope for is that they get the contract figured out tomorrow and we can do everything on Friday: port removal, line placement, admission, and first day of chemo.

Please pray that the contract is negotiated by Thursday evening so that the transplant isn't delayed up to a week.

Tuesday, August 16, 2011

We've talked about a bone marrow transplant for so long--almost two months. Now that we have a tentative schedule and it's almost here, I'm kind of freaking out.

It's almost here. Just 1-2 more normal days of freedom, then I'll be admitted for a month.

Is it wrong to say I don't want to? I don't want to leave my family and the simple comforts of my house. I don't want to miss that much work. I'll miss playing the organ and teaching Relief Society. I'll miss stretching out my hand at night to rest it against Dale's arm, hand, or back. I'll miss Tubber's soft hair and playful antics. I'll miss Miriam's first day of her senior year and Travis's first day of 8th grade. I'll miss various stages of Jordan's preparations to serve in the Sydney, Australia mission. There's so much to give up temporarily.

I'm such an emotional wreck, trying to get everything on my to-do list done before it's too late. Thank you, Dale, for understanding I just need to cry on your shoulder multiple times and release some of the losses I'm feeling.

Then, we get the final consent form for the transplant to preview before tomorrow's family conference at LDS Hospital. Summary? We're going to kill you. If we don't kill you, we'll make you wish you were dead. If you happen to survive, we're going to severely limit your quality of life in the future.

I know they have to tell you every possibility for full disclosure. However, if I wasn't scared before, I am now. So much that I'm questioning if we're doing the right thing. Aren't there alternatives to consider? Couldn't we just keep doing chemo whenever Hodgkins raises his incessant head?

Dale and I cannot figure this one out on our own, so we make arrangements to attend the temple in the morning.

Hopefully, I can sleep tonight with all of these demon thoughts of possible complications running through my head.

Sunday, August 14, 2001

I'm sitting on the couch, visiting with our oldest son, when the doorbell rings. Travis goes to answer it. When the door opens, I think it's strange because I hear a few different voices in the background. I assume it's a group of his friends and don't think much of it until Travis hesistantly says, "Trish, it's for you."

Really? Who could be coming to visit me on a Sunday evening--unannounced?

I head towards the front door to see our entire front lawn covered with people--mostly women, some children, and two men--from the ward. And what's even more amazing is they're all wearing various shades of purple: shirts, dresses, hair bows, and purple ribbons tied everywhere.

It's such an amazing sight that I stop breathing for a few seconds. What an amazing display of support, concern, and love. I want to stand on the front porch, absorbing it all for a few minutes. However, I'm almost immediately herded into the middle of the pack for a picture and surrounded by such good friends.

What a blessing! I was looking around closely during Sacrament Meeting today, realizing that I wouldn't have a chance to see everyone for at least six weeks, and it was an overwhelmingly sobering and emotional thought. Now, here most of those whom I identified as missing the most are gathered together AND wearing purple.

After the pictures, things are being handed to me so fast that I can barely hold them all. So many things, so much love. Tears start streaming down my face without invitation.

So many cards--most of them in purple envelopes! Food: clam chowder, cucumber sandwiches, chicken alfredo, homemade bread. Treats: chocolate chip cookies, ginger snaps, Maddie's specialty, buttery concoctions that she added food coloring to to make purple (what else?). Books and bath salts.

And so many hugs! If you ever want to be bathed in love, just leave it to the members of the Cedar Hills 4th Ward! I would never have dreamed up such an outpouring, but it was perfect--absolutely perfect. Thank you to all who participated. You touched my soul and reminded me, once again, that I am not alone in this battle.

I hope to post pictures soon from the gathering, but I just couldn't wait any longer.

Friday, August 12, 2011

We have a tentative schedule for next week:

Wednesday - Meet with BMT for patient education and family session. (Do I really understand what I'm getting into?)

Thursday - Remove port and insert central line.

Friday - Admission and Day -7. (They count backwards from the first actual transplant day.)

Now that it's almost here, it's getting more intimidating and more real. I've started a list of things I want to get done before Friday. Whew! Better get cracking. Otherwise, those things will have to wait for about six weeks.