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T-4

Todd was emotional this morning as the nurse hooked him up again to the heart monitor, blood pressure cuff, etc, etc, etc, He knew he’d be in bed, yet another day for the next 8-9 hours straight. “I’m tired of all this,” he said. “Having to be stuck and not able to move around…to be away from you and Darby…Why do I have to go through this? Why do I have cancer?” The wonderful nurse offered Ativan to calm his nerves, which took effect as he began praying, and allowed Todd to sleep a good portion of the day. 🙂

We don’t know why Todd has cancer, but we do praise God for the work that He is doing in our lives as a result. We are being drawn closer to our Lord, and we pray this is true for those of you out there reading this blog. I spent some time on a verse this morning in Lamentations (3:21-24), which reminded me of God’s love for us and the hope we can have in Him each day even when bad things in life happen.

“Yet this I call to mind and therefore I have hope:
Because of the LORD’s great love we are not consumed,
for his compassions never fail.
They are new every morning;
great is your faithfullness.”

Spirits were brightened after two visitors. Rose and I ate lunch while we sat in the sun. The weather has been incredible, so it was nice to take advantage of it. Todd also enjoyed visiting with Rose in his room. He mainly sat and listened, though occasionally offerred a comment and/or a half smile here and there. Jesus, Brit and Sophia arrived an hour later. Brit, Sophia and I walked around outside while Jesus and Todd chatted. Thanks for the visiting guys! It was great and helped to break up the day!

If you’d like to visit, please contact me. I know Todd would enjoy a visitor occasionally, though Todd is now considered to be neutropenic and has very few white blood cells to fight off infections. Here are a few guidelines to follow when visiting:

Please be showered with clean clothes (sounds silly, but super important).
Wash your hands upon entering his room.
No children or pets.
No exposure to people who have been sick.
Please wait to visit if you have even the slightest thought that you yourself may be sick.
No food or drinks.
No fresh flowers.
No touching.

Kinda harsh, huh? Well, I’m sure you guys understand.

Only one more day of the 8 hour chemo drug!!! Yeah!!

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No chemo!

After a recent visit with Todd’s oncologist, it was determined that Todd would not need another round of chemo!!! His bone marrow continues to recover slowly as the result of past treatments. The MD recommended that we take some time to consider another bone marrow transplant as they have found a PERFECT DONOR!! Obviously this information is bittersweet, as it is both an answer to pray and yet, another prayer request 🙂 We admit not wanting to rush into this decision and the overwhelming thoughts of having to do this process all over again, not to mention going through it with a baby now. We want to be actively seeking God’s direction in this decision, as we don’t want to be led primarily by feelings, or purely on facts.

We met with one of the coordinators of the bone marrow transplant team to get a tour of the BMT unit at Sutter and the answers to many questions regarding Sutter’s program. We obviously knew what to expect from Stanford’s program as a result of personal experience, but didn’t want to automatically assume that because Sutter was in town that the program was just as good. We were pleasantly surprised with our findings. Their program is similar to Stanford’s with a more personal feel. The patient to nursing ratio is 3:1 with only 6 patients on the unit at any given time. His current oncologist would be the only MD who would follow him during transplant, so the consistency in care would be great.

We also were put in touch with Sutter’s very first unrelated bone marrow transplant, Nancy. She was wonderful and didn’t have a negative thing to say about Sutter, the BMT program, or the staff. She strongly encouraged us to consider Sutter to be the place to undergo transplant.

So, lots to process and pray about! Will you join us?

A New Hope?

My calendar tells me that it’s been more than five months since the last update. As I’ve said before, that’s usually a good thing because it means I’m healthy and not needing treatment. Since August, I’ve been to Dr. Sayegh here in Sac twice, both times with reasonably good news. My white blood cell count has been fluctuating up and down, but all within the normal range.

When I last wrote, it was about Stanford, Episode III: The Revenge of the Smith. Truthfully, not much actual revenge going on. But if I continue that theme, Episode IV’s title seems appropriate for the discussion. Admittedly, I’ll have to be creative about incorporating Episodes V and VI into future updates. Or abandon the theme completely.

Back to the point……I met with Dr. Miklos at Stanford again on January 19. We discussed lots of technical stuff about cells and DNA and RNA and P53 mutation (*snore*, easier reading here), and then got into the reason for my visit, which was to see how the clinical trial was progressing and what it meant for my case.

Before I get into that, I know that there are some new folks on the list these days, and since I gave details of the clinical trial in my February 2006 update, you new folks don’t have the basic background info. Here it is.

One of these days, I’ll get around to posting all my updates somewhere on the interwebs so you all can read them from beginning to end, or fall asleep somewhere in the middle. More on that later.

The clinical trial is going quite well. Only two people out of 120 total patients have died, and one of those was by suicide, so it doesn’t count. Well, it counts as a death, sure, but it wasn’t from the transplant or related complications. Not that I’m making light of suicide. Or pre-apologizing for offending anyone, for that matter. Regardless, 2/120 is 0.016666667, or 1.7% mortality. Yes, that’s rounding up.

Another positive showing is that graft-versus-host disease occurrence is way down. A handful of patients have experienced chronic GVHD, and it was successfully treated with topical steroid creams with no long-term treatment required.

We then turned the conversation to the pros and cons and other reasons for moving forward with a transplant now. First, the cons, which are simple:
-New treatments could be developed in the future that would eliminate the need for transplant. The future is indefinite, and no currently existing research is moving in this direction. Hypothetically, I suppose anything is possible.
-The 1.7% mortality rate, while low, is not 0%. There is a risk of death. No other way to say it.

Now that I’ve cheered you up, here are the pros:
-I’m young, compared to the typical patient with CLL.
-My potential donor is a very good match. I say “potential” because the donor still has to pass a battery of tests to confirm that she is otherwise healthy and ready to donate.
-The treatment protocol is showing very positive results, as described above.

Finally, other reasons:
-There is disease present. Even though my overall white blood cell count is still normal, my lymphocytes are increasing (currently at about 50%) abnormally. This is an indicator of CLL.
-It’s been a little over six years since my diagnosis. On average, my brand of CLL transforms into something more aggressive 10 to 15 years after diagnosis. The longer we wait, the higher the risk of transformation becomes. Keep in mind that the time range is just an average, and it could occur earlier or later.
-I’ve already had two chemotherapy treatments. While it’s possible to have more chemo to postpone the transplant, it’s not necessarily a good idea because it will incrementally cause more damage to my body’s ability to handle a transplant later. In CEQA terms, this is called a cumulatively significant impact (Section 15355).

So, taking all this information, we’ve decided that it’s in my best interest to move ahead with a transplant. We have lots of homework in order to prepare, and have not set a date yet, though late spring or early summer seems to be our first choice. Specific prayer requests:
-Housing for the 3-4 months when I’ll be staying near Stanford. This is huge. Several of you have offered suggestions, and I appreciate all of them. We’ll be looking into many options, and won’t turn away offers of a free place to stay, as long as it meets the criteria.
-Finances: This may or may not be a big issue, depending on what my insurance will cover and what the housing situation is. My initial reading of my insurance coverage leads me to believe that they’ll fully cover everything except housing (not covered at all) and prescriptions (co-pay).
-Caregiver(s): During the 3-4 months I’ll be at Stanford, I’m required to have a 24/7 caregiver. This person will shoulder tremendous responsibility–cooking, cleaning, running errands, shuttling me back and forth to the transplant center, and lots more.
-Donor: As I mentioned, she still has to pass the medical evaluation before the transplant can happen. Since I don’t have another match at this point, it would be good if she passes.
-Whatever else that comes up. There are lots of details yet to be worked out.

We have not entered into this decision lightly, and have sought God’s guidance throughout this process. We honestly feel that this is His direction for me at this time, though it requires a great deal of faith on our part. It’s not easy to willingly submit to a transplant and all that goes along with it when I feel healthy. Nonetheless, we have chosen to follow.

One final note: One of the rules is that I won’t be allowed to use a traditional razor after transplant and during recovery. This is because they want to minimize infection risk, and if I cut myself, it would present an opening for bacteria. So, I’m now in the market for an electric razor. If any of you have experience with such a gadget, I’d love to hear your feedback on which brand is your preference and why. One caveat: the Philips Bodygroom is not an option.

The last 8 months have been a blur…

Hello, everyone. Welcome, newbies.

It’s been quite some time since I last sent an update. I guess I was distracted with getting married and what-not. Fear not, for you have not missed anything. I’m still alive and well, except for that cancer bit. Oh, and the alleged appendicitis. More on that later.

Last time I wrote, I was in the process of choosing a new doctor. Dr. Rosenberg retired, and I chose Dr. Antione Sayegh as my oncologist. Dr. Sayegh speaks English clearly, and his professional interests include leukemia and stem cell/bone marrow transplants. A solid choice, in my opinion. I’ve now seen Dr. Sayegh three times at his office, and once at the airport. Healthwise, my white count is still low–around 3500. It’s been a year since I last had the drip. All other cell types are healthy in number and function.

Speaking of appendicitis, I spent a night in the hospital recently. On the Sunday before Thanksgiving, I began experiencing intense, constant pain in my abdominal area. At first, my wife the nurse thought it was just gas. To her credit, we did have Mexican food for lunch, and it’s not irrational to suspect gas after such a meal. I informed her, however, that this pain was not gas. Long story short, after a few hours of pain, we decided to go the ER, where I was poked and prodded, and received a diagnosis of appendicitis. Thankfully, the ER doc consulted with a surgeon before making plans to cut me open, and they decided to do a CT scan to be sure. A couple hours later, I had the CT scan, and the results were inconclusive, or so they said at the time. They decided to keep me overnight for observation. I had a private room in the bone marrow transplant unit, of all places. The next morning, all my vital signs were normal, and I had an appetite after not eating since lunch on Sunday, so they fed me and sent me home. I had a follow-up CT scan last Wednesday, and everything came out normal. Whatever.

The HMO saga is possibly drawing to a close. You may recall that my HMO denied coverage of any treatment in Seattle because it’s out of their network. I preferred the Hutch in Seattle over Stanford because of the type of bone marrow transplant they recommended for me. In short, it has a lower mortality rate and higher success rate than the type of transplant Stanford recommended. Alas, my appeal of the HMO denial was also denied. I have two options now: appeal to an independent medical review board, or return to Stanford for another consultation to find out if they will do the type of transplant that the Hutch recommended. Both are excellent institutions, and are considered by many experts to be in the top five cancer treatment centers in the world. I have an appointment on January 9 at Stanford. If Stanford says they can’t or won’t do the preferred type of transplant, I’ll get that in writing from them, and continue with the appeal to the independent medical review board. If Stanford says they will do the preferred type of transplant, I’ll begin the process there with a Matched Unrelated Donor search. This is potentially the longest part of the process. Just because I’m starting the MUD search doesn’t mean I’m going to have the transplant as soon as a donor is found, though. I’m starting it now so there will hopefully be a donor ready if/when that time comes. As I said before, there is no medical reason at this time to think that a transplant will not be necessary in the future; however, I still believe that God is capable of healing me without it. Or healing anyone of anything, for that matter.

I guess that’s all for now. Merry Christmas, etc.

4/11/05 doctor visit

Today’s doctor visit proved uneventful, from a health perspective. White
blood cell count is 2,000, down from last visit. Platelets are at
139,000. Dr. Rosenberg says that this long-term effect is from the
Rituxan. I’ll continue with monthly blood tests and return to see a
doctor in July.

Wait a minute…..”a” doctor? What does that mean? It means that Dr.
Rosenberg is retiring at the end of June. I am now faced with the task
of picking a new doctor from the SCHMO staff….*sigh*….Sounds like a
perfect contest to me!!

Visit SCHMO’s website to read about my choices.
I’ll be picking from Laptalo, Miller, Rohatgi, Sayegh, and Shihabi. I’m
inclined to go with Laptalo (Go Ags!!), but not for any good reason.
Sayegh looks intriguing, too. All advice is welcome.

Why I love my HMO

Went to the doc on monday……all indicators look good…..white blood cells are at 3,100, platelets around 150,000….no treatment at this time, return for check-up in April.

BIG prayer need: my insurance company has rejected the request for service/treatment (bone marrow transplant) in Seattle. What does this mean? I’m still trying to figure it out, but so far it looks like they think I can get the same treatment within their so-called network of preferred providers. I talked to my oncologist about it, and he said that doesn’t make any sense. I’ve also contacted my primary care doc to get the info on how the insurance company’s determination was made. I will be appealing the determination as soon as I get enough information to understand how the decision was made. So, while I’m working through all this, the matched unrelated donor search is on hold, unless I agree to be financially responsible (yeah, right!) for all costs incurred in the event that the insurance company doesn’t uphold my appeal. As if I didn’t have enough to deal with already….

New Lifegroupers–By virtue of the fact that you are in my Lifegroup, you have been automatically added to this e-mail list. You had no idea what you were getting into, did you?!?!

A reprieve for the holidays

Quick to the point, to the point no fakin’, chemo cooks my cells like a pound of bacon. Sorry, had that song in my head for some reason…

Went to the doc again yesterday. White blood cell count is at 2000. It’s been six weeks since my last round of chemo, and my immune system is finally starting to recover. I can finally relax my strict hygiene practices. Doc decided to treat again with just the Rituxan, but not the Cytoxan or fludarabine. This is good because I won’t have the gnarly side effects of the latter. So, I’ll get the Rituxan tomorrow and next Wednesday (about 4 hours each day), and go back to the doc in January.

Obviously, this is excellent news, as I do not wish to be incapacitated during the holiday season. My stomach will gladly accept all the ubiquitous treats and lavish feasts without fear of, um, regifting.

Happy holidays, everyone.