New Challenges, New Acronyms

“If you start to take Vienna – take Vienna!!”

Napoleon Bonaparte – on keeping focused on a goal, applying overwhelming force, and not getting distracted.

 

Download the book here

Please check out my formal journal at CURE Magazine, a world wide publication found in every oncologist's office. I also encourage you to read this post: How My Cancer Might Save Your Life. It's a quick read, and if you pay close attention, you'll be a different person afterwards. 100% guaranteed, or triple your money back.

November 17, 2016
It’s been months since I updated this, mainly because not a lot has happened! Things have been pretty much just moving along, but 5 months is long enough to warrant an update.
In my last post, I talked about the multiple paths forward. Well, happily, Plan A worked. Ibrutinib daily, Rituxan monthly is doing the trick. Everything is under control, and I responded just as quickly this time as last. So 4 pills a day, an infusion a month, while we work on the next phase, cleverly labeled Plan A.1 last time.

Acronym One: DLI

That is having a series of procedures, where I get what are pretty much “booster shots” of the stem cells from my previous donor. The process, called a Donor Lymphocyte Infusion, or DLI, gives me increasing amounts of his cells until I reach the point of having Graft vs. Host reactions, which then put my cancer out of commission. This could take a couple times, or maybe even 5-6, while monitoring closely to make sure the GvH doesn’t go too far.

Getting into the process has been very slow. I was originally planned to start this month, but insurance approvals took a long time, and now we working through the bone marrow bank to see if my donor is willing to go through the process again. If he is, it will probably be after the holidays before this process gets started.

Acronym Two: IVIG

Overall, since the transplant (and relapse) my health has been very good. I work full time (plus some OT), exercise, and pretty much enjoy life. However, each time I’ve travelled, I’ve wound up with a nasty head cold, which initially responded to treatment but then bounced back, settling in my chest. This has happened WAY too many times. It takes weeks to get over the cold, and the cough lasts months. Enter another new procedure in our plans: Intravenous Immunoglobulin, or IVIG.

This has been around a long time, but is now used a lot more, including with transplant patients. Antibodies from thousands of blood donors are pooled together, then given to those of us with low immunity. According to both one of my PA’s and CNP’s, these treatments can have amazing results. I started these this week, and have one monthly for 6 months. It was pretty much 100% like my Rituxan treatments, same combo of stupid/groggy/hyped up premeds, and a 4 hour drip. Just the usual post-pre-med aftereffects, problems sleeping and getting back into normal rhythm, which I’ve done over 4 dozen times before.

While I really feel good, between the minor side effects of my treatments, and lingering long term colds, I don’t have that really peppy feeling I did before I relapsed. I’m hoping that getting my immunity back up to par will help me get back to that version of normal. I guess that’s Normal 3.0, not Normal 4.0, like my latest Cure column talks about. (Bragging, that one made it into a print edition!)

Anything Else?

Yes. But it’s a surprise. You’ll have to hang on until I get the next update done, to see what else I’ve been doing besides family, work, home, and cancer!

Campaign Three - Familiar Start, Unknown Future

“If you start to take Vienna – take Vienna!!”

Napoleon Bonaparte – on keeping focused on a goal, applying overwhelming force, and not getting distracted.

 

Download the book here

Please check out my formal journal at CURE Magazine, a world wide publication found in every oncologist's office. I also encourage you to read this post: How My Cancer Might Save Your Life. It's a quick read, and if you pay close attention, you'll be a different person afterwards. 100% guaranteed, or triple your money back.

If you can meet with Triumph and Disaster

    And treat those two impostors just the same; 

 Kipling, "If", Second Stanza, Second Verse

July 15, 2016 -My New Example Of Perseverance

I read a wide variety of books, seeking insights and wisdom as I move through life. One "trendy" book, at least back in the '90's, was The Book Of Five Rings by Miyamoto Musashi. Like a lot of these management fads, I only took one thing away from it, but what I took has fundamentally changed my approach to life. In my book, Rambling Along His Way, in the essay "Rhythms Of Life" (free download, shameless promotion for Rambling and More Rambling), I talk about how we live with many cycles within our existence. Some we are very aware of. Christmas comes once a year, we're never ready, and we complain that the stores convert their holiday sales areas too early. Monthly, we pay bills, and flip calendars. Weekly, we get paid and Fridays come around. Daily, we get up and do what needs to be done.

The epiphany for me was that we are living in a single cycle, also, called life. We're born, go through life events, and sooner or later, we move to the next life. Since our awareness is usually slower than the cycle, we don't always see this. Only by looking at others, particularly our parents and children, do we truly view the "seasons of life" that are mentioned in both the Book of Ecclesiastes and by The Byrds. I can see that, at the age of 58, with children grown and career concluding, that I'm in a different place than I was at 22 or 47.

I specifically use age 47 because that's the last age I was BC (before cancer). I fought that one, lived to 55, relapsed, fought that one, lived to 58, now here I am again. But, as I indicated in my last post, I'm getting better at doing the cancer thing. I know the ins and outs of treatments, side effects, and The Medical Machine. My family has quickly settled into Cancer Normal, doing what we do, physically and procedurally.

What's changed is that Taking Vienna the third time is different than taking it the second time, which was different than the first. Emotionally, we're in a different place, both based on our current life season,, and progression through the treatment path. Mainly though, I'd say it's the hope cycle we're really dealing with here. How many times, we ask, must we go through this? Are we ready to give up on a cure, and get our heads to a place where this is a chronic, life long disease?

Up until now, my cancer example was a local lady named Betty. She was well known around our community, due to her incredibly gracious manner, her quiet spiritual leadership, and the example she set in how to live in the world while not buying into current mores. To me, though, Betty is the lady I shared the chemo room with, who was on her sixth cancer battle. At #3, with a decade of fighting under my belt, I'm one of the old hands at this among the local oncology crowd. I'm still only half way to Betty's mark. So I've held that as a "desperation goal," that I can equal that mark, six full rounds.

Well, in the situation I'm in, with two failed transplants behind me, I've added another inspiration, a nameless man I've never met. He's 52 now, relapsed about 5 times, and has received NINE of the DLI treatments I am headed for. His story, in extreme medical geek talk, is in this 2013 journal article. As of then, he'd lived a decade past his failed transplant, through 9 further mini transplants, and I see no reason why I can't do the same thing. Sure, looking ahead to multiple relapses and more cycles of infusions and possible Graft vs. Host episodes, is rather daunting. But, as the whole theme of this post suggests, quoting my 2 year old grandson, "I've got this." I know how to live with cancer. I can balance work, family life, and treatments. I can do the Moffitt Hokey Pokey for as long as I need to. And if I'm sitting here at age 68, writing Taking Vienna Campaign Six, well, I can live with that.

News You Can Use

After that philosophy blast, it's time for some nuggets of actual information for my huge and greatly appreciated support group. You've been asking, "what's the plan?" Well here they are:

 Plan A: Restart ibrutinib daily - began June 22. Monthly Rituxan infusions - began July 6. Repeat bone marrow biopsy and scans every 2 months, until disease is back under control (not actually remission, but under control with the glorious status of NED (no evidence of disease) or progress stops (about 6-8 months max)

Plan A.1: Given the ibrutinib/Rituxan combo works as well as it did in 2014, start Donor Lymphocyte Infusions. Here's a quick, lay article explaining DLIs. These might be called (not by a doctor, but close enough for us lay folk) "mini transfusions." My original donor, who I thank God for every day, would have to go through the donation routine again. Assuming he agrees, they pull stem cells and freeze them. I get little doses, without any further chemo prep. The hope is to generate just enough Graft vs Host to kill off the cancer and maintain me cancer free without further treatments. The doses escalate until I reach the right level of GvH vs side effects, so I can live a normal life without any more treatments.

Plan B: If the ibrutinib/Rituxan doesn't beat back the cancer. We move to more aggressive treatments, anything from immunomodifiers like Bendamustine (my 2012 regime) or even back to traditional chemo drugs. Alternatively, there are some new drugs in the pipeline, similar to ibrutinib, that show possible good outcomes.

So, pathfinding again. I'm out there on the frontiers of treating Mantle Cell Lymphoma. I occasionally run into folks, on line, that have more years than I do, giving me hope that we can do this a long long time.

Vienna Beckons Again

“If you start to take Vienna – take Vienna!!”

Napoleon Bonaparte – on keeping focused on a goal, applying overwhelming force, and not getting distracted.

 

Download the book here

Please check out my formal journal at CURE Magazine, a world wide publication found in every oncologist's office. I also encourage you to read this post: How My Cancer Might Save Your Life. It's a quick read, and if you pay close attention, you'll be a different person afterwards. 100% guaranteed, or triple your money back.


June 22, 2016 - Another Day That Will Live In Infamy

I've been reading a lot of Kipling lately. I never served in the military, and I've never been in combat, but like many people I fight my own individual battles in my personal war with cancer, and like the theme of this blog shows, I take much wisdom from the horrors of humankind's wars. A quote I'm taking quite a bit of inspiration from:

"If you can force your heart and nerve and sinew to serve your turn long after they are gone, and so hold on when there is nothing in you except the will which says to them: 'Hold on!'" (From the poem "If", Kipling, 1910. I recommend you read it, the first stanza is famous, but the meat is in the later portions).

I've spent this week in communication with my family and many of my friends, but frankly, am overwhelmed with the task. I am truly blessed with a circle of hundreds of people whom I care about, who care about me, and have supported me throughout my long and often frustrating tenure as a cancer patient.

I've decided it's time to go public with my latest news. Last year's transplant, which hundreds of you followed here and also on my Cure blog, failed to provide a durable response. Meaning the lymphoma is back. It gives me great pain, in fact, emotional agony, at the way this will affect you all. All cancer patients will tell you that the worst part of cancer, including the whole sucky treatment and life threatening aspects, is the huge and dreadful impact on our loved ones.

I've written about this before, talking about the different rhythms in life. I'm learning about the rhythms of cancer. The first Diagnosis Day was horrible. The shock and whirlwind of activity lasted for weeks. I fought it for 17 months, then had a great 5 years in remission. The second D Day took less time to move into the next mental phase, and I knew the ropes of getting back into treatment. After 3 years in that battle, I had a fantastic year of health and hope. This time, within a few hours, I had myself into "angry and aggressive fighting mode" in about 3 hours. I still am subject to random waves of outspoken cursing, and one minute long pity parties, but mostly it's back to business. 

Details of my treatments and progress will be posted another day. This is enough news for one day.

My dear cancer family and supporters: know this. I will conduct this third campaign with the same enthusiasm, vigor, joy, and spirit as I have the last two times. And by now, we know, gentle readers, you're there if we need you, and be assured we'll ask for help when necessary.

If you can force your heart and nerve and sinew to serve your turn long after they are gone, and so hold on when there is nothing in you except the will which says to them: 'Hold on!'
Read more at: http://www.brainyquote.com/quotes/quotes/r/rudyardkip101657.html