Today’s a big Update day, so pardon the lack of balance. And I’m also on new pain meds for the leg…they’re working better than anything has so far (sleep!), but they are making me a little loopy, so forgive typos or any reduction in clarity!
THE UPDATE
R-ICE (chemo) cycle #2 complete. Went OK – Day 1 at Doctor’s outpatient lounge for a few hours and Day 2-3 at Los Robles Hospital. Slept most of Day 3 away (chemo kind of did that to me last time), and day-after symptoms all manageable (don’t confuse this with “feeling good”, but certainly OK given the circumstance). Good thing, too, since we spent most of today at City of Hope for a consult and to decide where to do the upcoming Autologous Stem Cell Transplant (ASCT: beware of medical procedures that your spell-checker doesn’t know).
This was an important day. And it wouldn’t have happened without my wife (who kept calling and made the COH trip happen) and my local doctor (who got us a first-hand, strong recommendation for a doctor at COH). Yeah, I’m the analytical researcher. Yeah, I’m “strong guy” taking all the pokes and poison they throw at me. But I think I hit a fatigue level with opinions and research. Good thing I have a great team backing me up.
With this ASCT procedure, once the well-defined protocol is decided upon, the logistics of coordination and execution with multiple departments, tests and insurance approvals are the real “battle”. First, even learning all the details of the steps, prep and who’s involved is daunting. Then keeping everything scheduled (timing is important), insurance approved, getting test results on time, medications delivered and tasks on track is a big job. The normal office staff can’t handle it and the doctor doesn’t and shouldn’t do all this coordination.
We were told at UCLA about this mythical creature called a “Transplant Coordinator” that would explain, expedite and assure all the logistics of this complicated, multi-step process. Here is a summary of what we know about Transplant Coordinators:
|
Stated Mission / Task |
UCLA Observation |
COH Observation |
|
Will contact you and walk through entire process with you |
After hearing nothing for a week and Tracey calling to check, got Quick Apology phone call from doctor. One of the coordinators retired. Still no contact (>14 days) |
Met after speaking to doctor for about an hour. Spent about an hour with us. Provided lots of answers, documentation, phone number, email. |
|
Will make sure things stay on track, on schedule |
See above. |
Laid out preliminary schedule, showing what would be “best case” and what could change. Explained that some things could be delayed by insurance approvals (very important information!) and assured us she would manage these fully and quickly but inform us of any such delays so that we would know and could help. |
|
Will set up pre-transplant physical to make sure your heart, kidneys and lungs are up to the major challenge ahead |
See above. |
Laid out in detail. Tentative date set. Coordinating to do everything with “one big day” at COH rather than spreading out. |
|
Describe stem cell collection procedures, timing in detail |
See above. |
Laid out in detail. Tentative date set. Described various scenarios on how long it might take, how it works. Described a special additional port I would need and made arrangements to have installed on first day of stem cell harvesting. |
|
Transplant Doctor will call my local doctor to review plan (not really for the coordinator, but you see the pattern) |
No call. My doctor knew he wouldn’t call and bet me a penny. She won. |
COH doctor had spoken to my doctor before we met and then said she would be talking to her again. Coordinating with local doctors is part of their standard process. |
|
Make sure you get modified dosages of special medications |
No mention |
Will coordinate with insurance, specialty pharmacy, make sure you get what you need… |
Other things at COH that we didn’t see at UCLA:
- Holistic situation review – are you set up at home to deal with things afterward?
- Does Tracey need lodging at COH for some of the long stretches?
- Do you need counseling for your or your family?
- Do you need help with transportation?
And there’s more…but you get the idea. We got the confidence that COH was on top of *all* the things needed to make this work as well as possible. There would be no way we could make up this “confidence gap” by double- and triple-checking on whether UCLA did what they said they were going to do (or that they were doing all that they should be doing). No personal advocate could really be expected to do that job. And even a brilliant doctor without a well-managed organization behind them can’t do it either.
THE MUSING
I think that was it. Did you see the parallel between both me and the doctors needing a support team? Nobody can do this alone. Well, that’s all you’re getting out me tonight (on chemo and pain meds…am I really writing this? now?).
WHATEVER
I invite one of you to put something of general interest in a comment…I’m thinking you’ve got more going on outside the cancer scene than I do.
Cliphoma 
Hi, your attitude is so wonderful. We wish we lived a bit closer to help. the picture of your kids is gorgeous. Drugged or not, your update is very clear and gratefully read by us. Our love to you and Tracey. Wilma and Alan
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Love your posts! Inspirational, informative and thought provoking.
Sending healing thoughts and prayers your way!
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posting again from my Tesla…
I was wondering whether we could use you as a pricing indicator for Ixia stock (sorry Errol). Knowing your love of quantitative analysis, how about comparing stock price fluxuations against your working activity? Are you a leading indicator? Should we be buying options based upon when you will finish treatment?
Be well, pal!
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Cliff and Tracey-Just a quick note to say that I am thinking of you and your courageous journey with Cliff’s health. I admire your dedication to finding answers, staying hopeful and strong and for Cliff’s amazing verse and captivating writing skills.
Thank you for the detailed narrative of your personal cancer story Cliff! Armen and I admire you and love you two and your family. Yes, Cliff, you DO have your team of friends to stand beside you and to both be inspired by and to inspire you toward continued empowerment.
Stay strong!
Heather
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Yes Cliff, I was very moved by your note. It definitely takes more than a doctor. You are your own best advocate, so wonderfully supported by your great family and great friends. You are loved. Bob
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Even drugged up you’re more articulate and detail oriented than I am on a good day. Thanks for the updates here Cliff. The last few updates landed in my spam folder so I checked your website. Really glad COH is all over it for you guys. Love and hugs from Farkii. Meanwhile, enjoy 20 jokes that only intellectuals will get: http://www.tickld.com/x/20-jokes-that-only-intellectuals-will-understand
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Thanks for the update, thinking of you.
Speaking of general interest, this Malaysian airline disappearance is quite the mystery. Not to diminish the fate of the passengers or the anguish of their loved ones, every time I hear updates, I keep thinking about “Zoolander”: https://www.youtube.com/watch?v=VrdS8mYtEh4
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We went to Friday Night Live tonight at Alana’s High School. Here is a link to a skit entitled Triagra that she wrote and directed. http://youtu.be/WhEj_XXtGpU. Alana has a best friend Sam, who has a boyfriend, Kian. Alana is always with either Sam or Kian or both. Sound familiar. I hope you enjoy it.
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Cliff… Keep on leaning in… and on… We did this stem cell process so call on me or have your wife call on me if you want an up close and personal… It is scary but it is also amazing! Here’s the general… Interviewing seniors at 3 high schools for this year’s L.I.F.T. Scholars! Inspirational and incredible… tough choices… Have one more school this week and then I need to narrow the potential candidates to those candidates to receive the applications. Humbles… inspires… Provides Hope… Sending you HOPE and INSPIRATION and STRENGTH… Hope the pain stays away… Hugs to you and yours, Susan
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Thanks for the thorough update, Cliff!
Here’s a general interest question (rather than a comment): I wonder if Jerry Seinfeld has a Tesla in his vast car collection? You’ll get a kick out of watching these clips while you are resting. http://comediansincarsgettingcoffee.com/
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