THE UPDATE
This is one I didn’t think I’d have to write – at least not this soon. But I am reminded again that there is so much we can’t control or know.
Yes, it is back. Already. Less than 5 months after what seemed to be a very successful transplant, a long-term cleansing and potential cure, it is back. Here is how it steam-rolled back into my life:
- was recovering from right leg/foot nerve damage, whining a bit in last post
- had ramped up walking to 2-3 miles in a day, became more active, even picked up another consulting gig
- about 3 weeks ago, started feeling a bit of a pain in my left hip joint/gluteus muscle – figured it was just more walking and limping a bit to compensate tweaking things a bit
- last week, the pain started increasing dramatically, peaking on Friday 10/10 (after travel to Vancouver and SF and work meetings…not that any of those cause cancer) – and we weren’t going to wait to take action
- 2ish Friday 10/10/14: rushed to get full body PET/CT to see if there was cancer anywhere…NOTHING FOUND! But there was obviously something going on, so had to do more detailed MRI of nerve area at base of spine.
- Weekend: using oral steroids and pain medication, got the pain under control and hopefully relieved some of the damaging pressure from the nerves. My legs are weakening and slowing down. Walking is getting more difficult. The advance of the enemy is obvious and relentless.
- 2ish Monday 10/13/14: got MRI late in afternoon.
- 9ish Tues 10/14/14 (today): got the call…something is infiltrating the nerve coverings exiting the Cauda Equina area of my lower spine. It is pretty certain it is lymphoma, but not in tumor form or in location that would show up on PET scan.
- 11ish Tues 10/14/14 (still today): went to local oncologist office, consulted on next steps. Got first of what will be a long series of every-other-day intra-spinal chemo+steroid treatments to relieve the nerve and attack the cancer. More tests to be done to see if cancer is elsewhere in my central nervous system (spinal fluid analysis, more MRIs Thursday).
- Later Tues 10/14/14 (still today!): consulted with “extended team” including UCLA doc, childhood friend (who happens to run oncological research at one of the largest pharma companies in the world), expert at LA Clinic to discuss clinical trials and treatment alternatives. My “team” has been great and I feel I’m in good hands. They make themselves available at all hours and by many means. I’m sure they’re doing all they can within their knowledge and power to figure out how to help me.
What I have now is an even more rare presentation of lymphoma than my previous weird presentations. There is no real standard protocol for treatment. There is very little data on what might work best. We are proceeding with the best recommendation so far (described above) while researching some new drugs (PD-1 inhibitors) that are approved for Melanoma, seem to help with some lymphoma patients, but are untried (and not in trials) for my situation. Incredible new curative drugs…but for me? Tough decisions coming…
THE MUSING
Who has time to muse? Besides, any current transient musings are dangerous. Feel free to muse on your own or share…
WHATEVER
My (mostly) growed-up bay area kids are coming home this weekend – nothing more I’d want to do with my time.
View from the Penthouse at the Fairmont SF to celebrate Ixia’s latest-greatest (well, maybe almost a year ago!) acquisition of Net Optics (no, Walker and I are not photo-shopped into this – but that might be an Errol cardboard cut-out):
Got in a little last-minute (electric-assisted) cycling around Stanley Park in Vancouver before the bad guys caught up with me:
And swung across a crazy-ass bridge strung across the canopy above the canyon at Capilano:
If only this shop (in Vancouver) had some real magic for me:
Cliphoma 
Thinking best thoughts for you. My love to Tracey. Thank you for your description of your new challenges. Rose Lee
LikeLike
[…] So, for those of you that subscribe to email alerts of new posts: I edit the posts sometimes after the initial email, so if you take a look on-line you might see added pictures or other changes. You can always check out the blog and old posts at https://cliphoma.org/ – the last post (with a few more pics) is at https://cliphoma.org/2014/10/14/it-aint-over/ […]
LikeLike
Oh shit!!
LikeLike
Keeping you in our prayers, Cliff. Having your kids back home — like heaven on earth. Enjoy.
Love, Chris and Teresa
LikeLike
Hi Cliff (and Tracy) – sending the most positive energy your way…
LikeLike
Dear Tracy and Cliff. We send our love, good thoughts and prayers your way that this is a temporary set back. I know how terrific it will be to have the kids home for the weekend.
Hugs, Wilma and Alan
LikeLike
Tough read…alternating between the frustration of “the return” and what it means to you and your family, and amazement of how positive and composed you remain. You have lots of support, now is the time to lean on us as necessary…
LikeLike
You are in my prayers.
LikeLike
Oh Cliff. I join the chorus of good will and positive prayers. You are blessed.
LikeLike
I am not sure how you had the fortitude to write us. May the strength and love that surround you continue to give you the warrior spirit. You are LIVING every day… And with that the lessons of life are taught to all. My prayers that one of these cocktails will take the physical pain away and you have news that once again you are cancer free. My thoughts are with you and your family.
Susan
LikeLike
sending all our “kick this in the butt again” vibes your direction! nothing but love and positivity headed your way!
xo – Wood Family
LikeLike
Today is hoshana rabbah, a special Jewish mystical day of prayer wherein the final heavenly judgment for the year ahead is made.
I respectfully suggest we “storm the heavens” with our prayers for my dear friend Cliff to vanquish this disease once and for all, so we can all go back to hearing only good news from the Hannel family.
Cliff, you are loved by so many whose lives you have touched and even if I am better than you in chess ( think back to 1974) that doesn’t mean I think any less of you — so please carry my love and those of so many others into this fight!
LikeLike
Don’t like this! No, don’t like it at all! This is truly a bummer! We are here for you! Anything we can do we shall do!
We love you very much.
Hopefully having the professional team and the family/friends team that are with you will make this round work faster and longer.
Thoughts, prayers & the chemo dance (which I do so well) are on their way.
Much love to Tracey, and “the gang”!
Nikki & Chris.
LikeLike
Don’t know if my comment went through…just wanted you to know that I am sending you and Tracy my love and thoughts. You have been a real warrior in all this, and I am sure you will attack this new issue with the same focus as the others. Hang in there! Much love…..
LikeLike
The Readers are here for you and the family. Love to you all.
LikeLike
Hang in there, Cliff, as I know you will. Sending positive thoughts your way. PCS
LikeLike
Sorry to hear of this setback, but rooting and praying for you always.
Yours, Larry
From: Cliphoma <comment-reply@wordpress.com> Reply-To: Cliphoma <comment+phuyd6dq1pdsswge3wdbk8p@comment.wordpress.com> Date: Tuesday, October 14, 2014 at 9:17 PM To: Larry Lang <llang@larrylang.net> Subject: [New post] It Ain’t Over…
cliphoma posted: “THE UPDATE This is one I didn’t think I’d have to write – at least not this soon. But I am reminded again that there is so much we can’t control or know. Yes, it is back. Already. Less than 5 months after what seemed to be a very successful transpla”
LikeLike
Love to you and Tracey. Praying for healing for you. Would love to do anything for you to be of support. Glad the kids are coming down.
Love you guys,
Jen and Dave
LikeLike
We are behind you all the way, Cliff! Anything you need anytime of day or night and you got it.
LikeLike
We are all on your side. Our thoughts and prayers are with you and we are glad that you are supported by an incredibly competent medical team. You have been an unwavering support to me and I am there for you.
LikeLike