April 5, 2007

• The Roller Coaster of Life

  Well, after making a decision and being 100% prepared to defend it to anyone, I got an email from Dr. H.  I could cut and paste it here, but I think I'm just going to give you an interpretation.

  I sent him an email reminding him that we had discussed taking me off of OxyContin and putting me on a pain patch. His reply left me reeling.  He said that he was going to put me on the pain patch, and that I could pick up the prescription on Friday when I come in for my Arenesp shot (more on that in a bit).  But he said that my level of pain had him concerned.  And that he had been doing a lot of thinking and researching in the 2 weeks since he saw me.  There is not much research on what works with the type of cancer that I have.  The type I have is fairly rare, so he's having to piece together the best information he can find.

  All that to say that he has changed his mind.  Because I'm young, and because the tumor should be "on it's heels" after radiation and chemo, he wants to knock it flat with 3 or 4 rounds of chemotherapy.  And he wants to do it right away.  He said that he's trying to come up with the best possible way for me to have long-term survival (5 years or more), and his gut is telling him that this is the best way.

  Paul and I are praying over it, and we're going to meet formally with Dr. H next week.  But because I trust my doctor, I think I will probably follow his lead.  Which may mean that chemo starts really soon.  I'm going to ask him to start it on 4/19.  I sing in chapel on 4/18, and Ciera's play is 4/11-14.  I just want to feel good for those things.  The only thing that having chemo on 4/19 would interfere with would be that my Grandmamma is coming on 4/20 for the weekend.  But she will understand if I'm laid up on Saturday when she comes down here to see us.

  The Arenesp thing... I emailed Dr. H on Tuesday morning at his request.  I reminded him of something he wanted reminded of, and let him know that I had gotten my blood drawn on Monday, so the results should be in his computer.  He responded that my INR was great (we were tweaking my Coumadin), but that I'm still anemic, with hemoglobin at 9.7.  After 3 blood transfusions and an iron infusion, I'm still anemic.  And that ticks Dr H off.  He's getting impatient.  So, starting tomorrow, I'm getting Arenesp injections every 2 weeks.  It's supposed to kick my bone marrow into high production.  Hopefully after a month or so, I'll not be anemic anymore.

  Being anemic is probably why I'm so tired in the afternoons and evenings.  Once we get that under control, it's possible I'll have more energy.  Today, I needed a nap after work.  The truth is that right now, with the weather being beautiful, it's OK to take a nap from 4:30-5:30 or 6:00.  The kids come home from school and play outside for a long while.  So, by the time they're in the house, I'm awake and a bit more alert.

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  Ciera will be part of Pygmalion at her school next Wednesday through Saturday.  If you live near Colorado Springs and want to attend, email me, and I'll tell you how to get tickets.

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  Today, I went digging.  Before I die, I want to take my family to Walt Disney World.  I wrote to them asking if they ever consider wishes from adults with life-threatening illness.  They linked me to a couple of organizations who grant wishes to adults. Every one of them will accept applications from adults who are in their last year or two of life.  1. I don't want to know if the docs think I won't live more than a year or two, and 2. I'll bet that in my last year of life, I won't feel like taking a vacation to Walt Disney World.  I was so hoping that we would be able to do it.

  I priced it, and we can get a cabin at Ft. Wilderness, park hopper passes and plane tickets for about $5100.  That's not bad, but we don't have $5100 right now.  I've saved the trip on disney.com, and maybe we'll try to do it.  The deposit now is $1750, and I could come up with that on a credit card.  It would be our Fall Break trip.  I would so love to surprise the kids and tell them that we're going to a cabin for the week, and with them expecting to go to Grand Lake, get on a plane to Florida.

  It's just something that I have wanted to do for a long time, and now that I know that I may not be around into my children's adulthoods, I really want to make this memory with them.

  One of the advantages of the cabins at Ft. Wilderness is that they have a full kitchen.  So we could actually pack one suitcase that's just food (I don't know how we'd go to the grocery store in Orlando), and have at least 2 meals a day at the cabin.  That would save us a bundle!!!

  So.  I might do it.  I might make that reservation.  Part of the cost would be travel insurance in case I get too sick and can't go.  I just SOOOOO want to do this!!!!!!!!  This IS a memory I want my children to have after I'm gone.  I want them to remember it being fun, even though Mama was sick.  I just wish they had Make-a-wish for adults that granted wishes before you've been given a death sentence...

  • 11:10 pm
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