Day Fifty-Five: October 26, 2009

Dear Friends,

Thought y’all might want to know where the meandering journey of leukemia has taken Reid since the report of his remission.

FIrst, the allopathic news:

Reid and Pete traveled back to Portland on the 15th to meet with Dr. Kovacsovics regarding all the details of Reid’s October 9th bone marrow biopsy. The OHSU experts are quick to remind us that this remission is not a cure, and so recommended that Reid receive consolidation chemotherapy to help him remain in remission. There is a 50% chance of relapse with chemotherapy alone.

Regarding transplant: receiving his own cells in a transplant is an option for Reid (since Sarah is not a transplant match), and while this approach would reduce the relapse risk down to 30-35%, his doctors don’t recommend it at this time due to the aggressive nature of the disease if there were to be a relapse from stem cell therapy. The other transplant choice (a matched unrelated donor / MUD) is also not recommended at this juncture, due to high risks and complications, but may be considered later if necessary. So, in a nutshell – transplant has been put on the back shelf.

Back at the ranch, we had hoped that Reid’s consolidation chemo would be an outpatient clinic experience through the Medford Hematological Oncology group, but Dr. Savage, his local oncologist determined that it would be best for Reid to be admitted to Rogue Valley Medical Center for his five day stints of chemo (receiving doses twice daily on days #1-3-5). And that’s where he is right now, with today being day #5, and discharge home tomorrow.

One need only watch the nurses handling the chemo medications with their extreme biohazard precautions to start to appreciate the incredible toxicity of the stuff, but then as you also factor in the way it storms through the bone marrow like a raging wildfire and strips away every living thing, you can’t help but stop breathing for a few moments. It’s an awe-some process: purifying the marrow (if you dare call it that) in the most extreme and nearly overpowering of ways.

From about Halloween (day #10)  though Veteran’s Day (day #21), Reid’s white blood cells (those that protect the body from infection), red blood cells (those that provide oxygen and nutrition through the body) and platelets (they keep him from bleeding) will be low. He’ll need protective medications to keep from getting infections; we’ll monitor his temperature twice daily (and holler about anything higher than 100.4 F), and he may need to go into the clinic for blood and platelet transfusions, while also expecting to report to the lab two or three times a week until his blood counts recover. Whew. Reid’s been through this phase of chemo before, but he was at OHSU then. This will be our first encounter with running the gauntlet at home, and yes – the mama feels a bit nervous.

Once his counts are back up, around day 28, he’ll be back in RVMC for another five day course of chemo. This whole deal will happen a total of four times. Yes. Four times.

Because many of you have asked, “What else will you pursue?” I can tell you that on the  ‘alternative’ healing front we are in consult with my dear and trusted friend, Jonathan Treasure who is a Medical Herbalist practicing at the Centre for Natural Healing here is Southern Oregon. Jonno specifically assists cancer patients with cutting edge mainstream treatments, managing chemotherapy toxicites with botanicals, supplements and dietary interventions. We are profoundly grateful for the wisdom and support that he has already offered not only to Reid, but our family.

I struggle a bit when writing to you all, about how much to share. I mean really, who wants to read about cancer in the present tense? The books and articles that have appeared on our coffee table these last few weeks all stem from wise and road-weary reflections – those gained with emotional hindsight and a clear understanding of the ending. In the present, not only does one have to face this disease monster of our darkest nightmares, Cancer,  but a host of additional annoying and negative creatures that accompany the monster into our lives: insurance claims and policies, medical bills, government agencies, prescriptions, appointments, blah, blah, blah. It begins to feel remarkably unfair that the sheer weight and reality of a cancer diagnosis can’t be just that and that alone. This is one cake that doesn’t need icing, yet it comes in spades. In the present with cancer, hindsight is only a few days old – measured by varying degrees of stress, relief, exhaustion, and information, and the only thing we clearly understand about the ending is that we desperately want to get there whole and healthy. In the meantime, we divide up and tackle the various ugly creatures and dirty tasks set before us one day at a time, while the single person in this equation who least deserves to carry the heaviest load is Reid.

As you know, Reid has done remarkably well thus far – he possesses a passionate spirit that is present, strong, and infused with gentle and joyous life force. For me, it is familiar to cheer for Reid, having already spent nineteen years as his biggest fan, nudging him to be brave and loving, to “go for it,” and be his best truest self. Would that I could now also give him tools with “success guaranteed” brands on them, but those are difficult tools to lay hands on. Our collective prayers and the continual intentional focus that All Will Be Well for Reid are essential.

I want to express my gratitude once again for all among you who have not only looked after Pete, Scott, the girls and I – but also for checking in on my folks, supporting Reid’s aunts and uncles who have been so incredibly present and involved, and casting a tender net of love and concern over our families during this crisis. Having grown up in this amazing place, where I’ve occasionally said – not as nicely as I ought – that the town is a bit “too small” at times, I am deeply moved by the compassion of our community. I cannot begin to imagine the loneliness, overwhelm and fear that people living in less connected places, with fewer friends and family around them must contend with. I am reminded, every single day, that we all have the power and ability to make a difference for one another, and we get to choose if that will be positive or not. This “ability” is a powerful and blessed gift – available to us as often as we dare employ our hearts. Amazing. And thank you for daring.

Wishing you well on this rainy October afternoon ~

With love, Martha

About Martha Phelps Studio ~ creative on purpose

...a meandering journal of a changing life and the unexpected graces it brings. Earlier posts may provide some history, but this series of writings aren't likely to follow a straight line as I explore topics such as raising kids, making choices, self discovery, the impact of change on a family and how to (hopefully) live with balance and purpose.
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