Scott here. May be my last blog entry for a while. Chemo began last night at 9:30. The initial dose didn’t hit me too bad. But I’m now on my 3rd dose (one goes around the clock, the other every 12 hrs.) and it’s wiping me out – I’ve been so tired since mid morning. But, after all, I’m getting drugs that are killing my cells and I will be getting increasingly tired.

If this plays out like last time, by next week my appetite will diminish greatly as I’ll have burning mouth issues followed by a few days of intense diarrhea. A nasty road all in all.

My cell counts will hit bottom in about a week and stay down for about a week before starting to come back up. Fortunately I have excellent care between the staff here and my personal nurse Lynne.

Please pray for:
- energy and health for my bride as she pours herself into my care.
- the morale of my kids as parents are away – they are teenagers, and capable of being home alone, but it doesn’t mean it’s easy on them when life and schoolwork have to go on, but their dad’s health is so uncertain and there is no Dad or Mom to talk to.
- wisdom for us as we try to decide how much time Lynne spends here vs. at home.
- protection for me from two dangers: 1. illness/infection 2.. skin breakdown from too much time in the bed in a similar position. I am getting physical therapy (PT) while here, and trying to make sure I get out of bed to the wheelchair 2-3 times per day, but already as my energy wanes it is hard to want to do the PT. Fortunately the PT gal brings out the fighter in me.

Thank you, friends and family, for being such faithful prayer partners.

With gratitude, Scott, Lynne, Daniel and Becky

Share our joy, friends – I (Scott) am cleared by insurance and the hospital for admission. (Well, technically, the insurance company needed 4 code numbers from the hospital before all the i’s are dotted, but these will be faxed over tonight). The hospital hopes / expects to have me admitted tomorrow afternoon (they presently have no rooms available, but have me at the top of the list), with chemo beginning the same day, or possibly the next.

There are not words adequate to describe the relief and joy Lynne and I feel about this. Burkitt’s Lymphoma (my cancer) is extremely aggressive, and, in the absence of proper treatment, could come back at any time, making for a ticking time bomb situation. The weeks of waiting for doctor / insurance approval has been the most difficult season we have endured in our many years of marriage.

So: back to the hospital. UCSF is rated in the top 10 cancer centers in the nation, so I’m in good hands. And we’ve spent enough time there that most of the doctors and nurses feel like family – so it’s a comfortable place for me. A quick recap of the 4 month process I’ll be going through:

Month 1 – they just about kill me with chemo to get my white blood cell counts down to zero. I’ll be very weak and sick, but should recover (they put me through this already in October to stop the cancer’s spread in my central nervous system, and I recovered). Once the cell counts rise to certain levels, they will harvest newly generated cancer-free stem cells.

Month 2 – a weak and sick Scott goes home to recover and gather strength for…

Month 3 – they blast me once again, this time not just taking my immune system down to zero, but actually killing it. Once there, they implant my new (clean, cancer free) stem cells, which the body then uses to rebuild by immune system. I’m told the staff sings “happy birthday” to you while this goes on!

Month 4 – an even weaker and sicker Scott is sent home on “house arrest”. I can neither leave the home nor have visitors – in an effort to protect the new “baby” immune system. Even if one of my family members gets the sniffles, they’ll have to leave the home until better.

So that’s the long path to recovery on cancer. After that, I’ll be facing the challenges of retraining my leg muscles how to work (we’ve made progress on this front, but it is likely that with how sick I’ll be these next 4 months I’ll lose much of what I’ve gained), and the long road back from 16 months or so of my body absorbing some of the most intense chemotherapy around.

Thank you to all who read our blog, pray, and give in ways that we didn’t even know were possible. Yours have been the arms that have carried us through this long turmoil.

Last word: don’t expect to hear as much from us these next few months. We will do our best to get out blog notices when possible but understand our lives get turned upside down, with me very sick and Lynne living in two worlds (sometimes overnight in San Francisco, sometimes home). Please bear with us if we don’t respond quickly (or at all).

Much love – celebration time! – Scott, Lynne, Daniel and Becky

Scott here. No word yet on insurance approval or hospital admission. The Bone Marrow transplant coordinator at UCSF said late Friday he was going to try to work with some others he knew in the insurance company and thought he could get a Sunday admit. But we’ve heard nothing since.

In the meantime, we feel very exposed to the return of the cancer, and it doesn’t help that my body has been doing some mysterious things – legs swelling, digestive problems. It leaves us at times nervous as cats, and especially poor Lynne who knows things so well medically.

We heard an excellent podcast today from John Ortberg, the basic premise of which is that we need to give every thought captive to Christ – including our deepest fears. This was a real challenge to us in our exhausted, fearful state – but exactly what we needed to hear. We also enjoyed a date – a rarity these days – having lunch at the El Palomar.

Thanks as always for prayers, friends. Pray that we could rest & trust, as well as for speedy admission.

Love,
Scott, Lynne, Daniel & Becy

Scott here. Well, over a week after the hospital said we’d probabably be admitted, and still no definitive word as to admittance date. This is of grave concern for Lynne and I as each day without chemo treatment tempts my killer cancer to resurface.

We spent yesterday being squeaky wheels, trying to nail down where the short circuit was, and found insurance hadn’t yet received anything. However, as of this morning insurance has received ALL paperwork – yay. It has to be reviewed by 3 different people at the insurance – person #1 was about halfway through when Lynne spoke to her. The final person has the ability to debate and grill my doctor’s recommendation, and, as busy as my doctor is, such a griiling could considerably slow down the process.

So, once again we come to you and as that you please pray hard on our behalf – in this case, that things would move speedily and without delay. Right or wrong, Lynne and I are carrying a very strong sense that time is of the essence on this issue.

Thank you prayer partners!

Scott, Lynne, Daniel & Becky

Lynne here – it’s been awhile since I wrote on the blog, and though I feel out of practice, I’ll try my best.

We have been waiting with great fear and trepidation the final results from Scott’s last pre-bone marrow transplant tests. Finally, late Friday afternoon, we got the good news that all was clear and no cancer was detected. Since Monday is a holiday, the insurance probably won’t be able to approve everything until at least Tuesday, so it’s likely to be Wednesday or later before Scott actually gets to be admitted.

So many relapses have happened to delay Scott getting to this treatment over the past 4 1/2 months that we can’t quite feel the elation until he’s acutally in the hospital and his admission is a done deal. But, we did go out to lunch today (Saturday) to celebrate, and it was wonderful to be out in the warm sunshine, eat out on the little patio, and have a little slice of normal life.

It’s weird to be excited that he’s going in for treatment that will make him so much weaker and sicker, but that’s what it will take to have the hope of longer life on this earth.

All of your blog notes have been so encouraging, and so often come at just the right moment they’re needed. Thank you all for your continued prayers. Please keep praying that all will go well until he actually gets admitted with no further delays, and then pray that he will be able to tolerate as well as possible this additional round of chemo.

God bless you all, and thanks for all your love and prayers,

Scott, Lynne, Daniel, and Becky

1/12/2009

3:45 PM

As I (Scott) sit and write we are 15 minutes away from the “family conference” with the doctors. It’s been a hard day to wait. At the meeting, they’ll tell me whether or not the 5 tests they’ve ran on me show any sign of cancer. If no cancer – then on to bone marrow transfer, and a possible medicinal cure. If there is cancer – well, the doctors have no more cards in their deck to play. It is the most surrealistic moment for Lynne and I; one way or another, our lives will be completely different in an hour.

Well, we finally got started around 5, meeting with Dr. Kaplan, Director of Adult lymphoma, and Rick, the RN in charge of coordinating our Bone Marrow Transplant (BMT). Without coming right out and saying “you’re approved”, it was pretty obvious things were heading in the right direction when Dr. Kaplan spent an hour on the whiteboard detailing what the medical treatments would be, side effects, risks, etc. Late in the meeting it was discovered that they had forgotten to run one of the necessary tests (a bone marrow biopsy), so it’s back up to San Francisco Wednesday. Once they have this, everything should be in place for final approval by the insurance folks and it’s now looking like early next week before I begin my hospital stay.

There were a couple of “odd spots” that showed up on the MRI’s that the Doc’s aren’t sure what they are. Lynne and I are having a hard time not being nervous as cats that this will 1. delay treatment further and 2. put me at ever increasing risk of this highly aggressive cancer returning. PLEASE PRAY for speedy resolution of these matters and that I can begin the BMT soon – it is my only (medicinal) hope to live longer years.

I’m continuing with my physical therapy. I’ve been super tired of late, hard to exercise the muscles, feeling weak. This has had us concerned. So today we dragged me down to my physical therapy appointment, again with me feeling very tired. Surprise, surprise, today turned out to be one of my best days standing and walking! So that was a real encouragement to Lynne and I.

I can see it’s going to be a longer road to recovery with my legs than previously thought. For one, the BMT process is going to make me very sick and weak, and I’ll probably lose much of the muscle I’ve rebuilt these past 6 weeks. Secondly, while some parts of my legs are back to normal, other parts are experiencing slow nerve re-growth (and often are not very functional). So I’ve been facing these last days the truth that it’s going to be a while before I’m back on the bike, and that life in a wheelchair will be a reality for a season. Life in a wheelchair – no getting up to walk to where you want to go, a tremendous feeling of loss of independence. And I’m continually finding myself fighting off guilt at how much the wheelchair adds to Lynne’s load. Those are some of the battles I”m fighting of late.

Lynne and I, while exhausted, remain convinced of God’s goodness and ultimate sovereignty. We get so many encouragements from God’s people – in every way conceivable – that it is hard to lose sight of this. You all that read the blog and pray and give encouragement, act as witnesses to the Great I AM that somehow has my cancer as part of his plan. Thank you!

We’ll keep you posted as things change!

Love, Scott, Lynne, Daniel and Becky

Not much new to report from our end. I (Scott) am still scheduled to re-enter the hospital the week of January 12, but one of my tests will not be completed until that date. This means insurance won’t approve until they have all the tests, which backs up my hospital entry date. It’s possible my entry date could get delayed until the following week. The good news is I’d be at home, the bad news is that the cancer has another week to re-appear. So we’d rather enter the hospital sooner than later.

I’ve been feeling well but tired. We’re trying to give me as much chance to rest as much as possible amid physical therapy sessions. We’re both continuing to feel very worn from this long battle but know that God is good and with us. Some day this will end, we say to each other.

Friday (tomorrow) Lynne & I have a brutally long day of tests in San Francisco. I have a pulmonary function test at 10AM, a PET CT scan at 1, full spine MRI at 5 and whole brain MRI at 6:30PM. The last three procedures all involve lying in an uncomfortable position, not moving, and figure each to take minimum 90 minutes each. Plus the MRI’s involve lying in a tube in which you cannot see out and are subjected to very loud knocking noises – misery. So we’d covet your prayers for our demanding day tomorrow.

Thanks as always for your prayers and love!

Gratefully, Scott, Lynne, Daniel and Becky