The news was unexpected; the prognosis was uncertain.
Roger Lipman “was feeling a little punk” after a trip to Spain in spring 2012. Blood tests and a bone marrow biopsy led to a diagnosis of myelodysplastic syndrome (MDS), a disorder in which the bone marrow does not produce enough healthy blood cells.
“I walked out and I was thinking, ‘I’m doomed,’” he recalls.
Online research provided some information but not everything he wanted to know. “With my somewhat mathematical background, I wanted to figure it out,” says Roger, who is retired from the insurance industry. “But you can’t solve the equation with so many unknowns.”
Direct questioning of doctors didn’t answer all his questions, either. “Physicians never talk about death. Physicians never talk about failure. Physicians never talk about what’s going to happen to you. Instead, they say we hope this will work, we think this should make an improvement.”
Roger learned the MDS had developed into leukemia in April 2013.
An optimist, he hoped to get back to the daily activities he loved. Working on his ranch and vineyard in Lake County. Spending time with friends and family. Traveling. Enjoying fine food. And dancing.
The path from diagnosis to restored health took him into unchartered territory, including an experimental treatment, a priceless gift from a stranger, and extended periods in almost complete isolation. The various procedures and prescriptions left parts of him new and improved while damaging others.
He credits his wife, Rebecca Barnes-Lipman, with doing the heavy lifting required to care for an extremely ill spouse and keep everything going smoothly with their rental properties, at the ranch and at their Benicia home. “Rebecca did the lion’s share of everything,” says Roger, who turns 74 this month.
He emailed friends throughout the journey to update them about his medical experiences, calling himself “Lab Rat” and “Bubble Man” as he endured chemotherapy and a bone marrow transplant. His sense of humor showed in many, and he ended each note with heartfelt reminders to enjoy life and love each other. Roger sent the last message in May 2016 when he went surfing in Hawaii and declared he’d met his goal of returning to normal life.
From his email telling friends about his MDS diagnosis (2012): At the present, I am asymptomatic other than getting tired once in a while. Nonetheless I am commencing planned treatment with scary drugs (a thalidomide derivative).
Please don’t avoid me or pour sympathy on me. I’m not going to give up or give in. Let’s have as much fun as possible and enjoy every day. I have had and am having a wonderful life and intend to live fully until …
Keep having fun: Life really is short.
How did you get a spot on the bone marrow transplant list? MDS is manageable but you die eventually. I had a lot of transfusions, both platelets and red blood cells. But I was only on one medication when I was diagnosed. Dr. Chang (Roger’s oncologist at Kaiser Vallejo) said, “You’re the healthiest person I’ve seen with MDS—I’m going to see if you can get a transplant.” You have to petition for it. I got greenlighted and I was sent to Stanford.
What did you have to do to prepare for the transplant? They had to kill all my bone marrow – that’s why I went through so many rounds of chemo. The first time, I got close but no banana. The second time was at Stanford, and I also had experimental treatment with statins to help break down the cell walls so the chemo could get into the cells. They gave me something like 30 times the normal dosage. I had to be isolated. …
After 42 days, it wasn’t enough. So I went back to Kaiser for another round. I was down to 5 percent blasts after that—just enough to get the green light for transplant.
What convinced you to undergo the experimental treatment? I asked Bruno Medeiros (Stanford doctor who worked on the experimental treatment), “If I don’t do anything, how long do I have to live?” He said six weeks. He was the one exception to the rule about physicians not telling patients information like that.
I polled a bunch a friends. I asked them what they would do. One of them said, “Why not? What’s the downside of trying it?”
The consensus among my friends was, “You’re so ornery, you’ll live no matter what.”
From his email with the subject ‘Lab Rat II’ (Aug. 8, 2013): Well today started the trial where they give me 1600% overdose of a statin to clear my system of most every bit of cholesterol, which in the researchers’ opinion will allow the cytotoxic (aka poison) chemotherapy drugs to get into my bone marrow easier. …
But wait, there’s more! Sunday they start me on the cytotoxic drugs in very high doses. All this is supposed to drive the blasts (cancer) into remission.
As strange as it seems, I feel great. I get to wander the halls and even go to the cafeteria.
Keep having fun and hug those you love, ah heck, hug others too.
What did you do to pass the time while you were in isolation? I called it incarceration. …Think of living in a condo—you only get this one view all the time. My view was of an ivy-covered wall with construction going on beyond it. Same ivy every day. I hate television so I read books. Rebecca got me a full set of Patrick O’Brian’s books—16 books all together. I have no interest to go to sea, but I know all about ships now.
From his email with the subject ‘Lab Rat IV’ (September 2013): OK. So it has been five weeks at Stanford and still no degree.
The chemo has run its course and my bone marrow numbers are finally climbing towards normal. …
I’m now trying to think of what it will be like to be in the real world. You know, where people don’t ask you about your bodily functions every day. … I will enjoy a walk, seeing birds, seeing things other than the view from my cell, talking to people who are not medical staff, having meals anywhere but in bed (trust me, breakfast in bed is really overrated), being able to wear clothes not pj’s (forget Hugh Heffner) and not being hooked up to a bunch of bags on a stand which I have to drag around.
I look forward to working on something—anything where my mind is involved in a physical aspect of the project.
If you find me talking your head off: Stop me. I need new ideas and new fresh information to make up for the very limited space of the environment I’m in now. …
Your friendship and many memos made every day a better day….
Thank you for your patience with this patient.
From his email with the subject ‘Lab Rat Metamorphosis’ (October 2013): I had a reaction to one of the chemo drugs which had the effect of adding almost 20 pounds of water to me. I looked like a sausage with a red glow all over. I became “The Lobster.” It’s abating now. The good side is now can see what I would look like as portly. Not pretty.
From his email with the subject ‘Joyful Lab Rat’ (Nov. 8, 2013): The transplant will occur on Saturday the 23rd. … This is really more than a ray of hope. It’s a sunny beach of hope. …
Nothing makes you think of the future more than when you’re not sure there will be one.
After that third round of chemo at Kaiser, when did you return to Stanford for the transplant? Just before Thanksgiving (2013), we went back to Stanford. I had another round of chemo there. This one was really aggressive—well, they all were aggressive. …
The transplant itself is like a platelet transplant. They put a bag on the IV pole and it flows into you. Afterwards, the nurses brought me a birthday cake with a candle because it was my new birthday.
I had to stay near Stanford for 100 days after the transplant. One week after transplant, we moved to Mountain View.
From his email with the subject “Bubble Man in Isolation” (Nov.28, 2013): The transplant was uneventful. … What it portends however is significant. The game now is to wait. It will take about two weeks for the cells to attach to me and start to be productive. Once that happens then I will be able to go to our local apartment to wait for a few months to get fully engrafted. …
I have to say that I never thought I’d make it to here.
Editor’s note: Roger Lipman was first featured in a Benicia Magazine Q&A interview in July 2011. He sat down for this interview on Nov. 23, 2016, the third anniversary of his bone marrow transplant. “It’s my third birthday, so I want a pony and cake,” he joked. He agreed to tell his story in part to promote Be the Match registry (bethematch.org) for bone marrow donors.
“Why talk about this? Let’s talk about tomorrow instead,” says Roger. “But if it gets people to donate, that’s the bottom line for me.”
Part 2 of his story will be published next month and will cover the post-transplant period.
