Editor’s Note: This is the second and final part of our interview with Roger Lipman. Part 1 was printed in the January issue and is available online at www.beniciamagazine.com.
Roger Lipman was fighting to save his life. He’d endured countless transfusions followed by four rounds of aggressive chemo, an experimental treatment at Stanford Hospital and finally a bone marrow transplant to fight off leukemia.
Eighteen months after he first felt “a little punk” and headed to the doctor, his body showed the ravages of the battle. He tired easily. He was skinny. His immune system couldn’t protect him so he wore a respirator mask when he went outside. He and his wife, Rebecca Barnes-Lipman, waited in a Mountain View apartment to learn if the transplant would be effective. Post-transplant protocol required that they live near Stanford Hospital for 90 days after the release from the hospital.
Roger, now 74, emailed friends with updates through the ordeal, always encouraging them to treasure life and their loved ones.
Three years after the transplant, Roger is now back working at his ranch and vineyard in Lake County, spending time at his Benicia home, and enjoying good meals with his friends and family. He’d rather talk about the future than his past, but he hopes that telling his story will raise awareness about the need for bone marrow donors.
He remains grateful to the professionals who cared for him during his treatment. After he regained his health, he returned to the various hospitals and labs to thank the people who helped him reach his goal. He is especially grateful to his donor. “Again, I have to thank you for your generosity and kindness in being my donor,” he wrote her eight months after the transplant. “You have given me life.”
From his email with the subject ‘Lab Rat Escapes’ (Dec. 11, 2013): At last I’m off the hospital circuit. We are now living in an apartment in Mountain View instead of being incarcerated …
My energy is low as my body adapts to all the drugs: 22 tablets per day, which is gagging when you think about it. Hopefully some will go away as I recover. I expect to gain strength each day and increase my scope of activity. Right now sleeping feels real good. …
We lost a great friend over the Thanksgiving weekend and he will be sorely missed. Twenty-five years plus of lunches, great dinners and fine friendship. We all want more time. So again remember to care for those you love and love those who need care.
How were you doing when you left Stanford after the transplant? I was a space case at that point. I could do some things, but I’d get exhausted. My diet was highly restricted. I couldn’t eat anything that was raw. My attention span was not very good.
Rebecca took over everything. She was doing the cooking, managing the businesses, managing me – doing my infusions, cleaning my port, doing it all.
For 12 weeks, that was our ritual. My exercise was getting out of bed, getting dressed, putting on my mask and walking to the tienda near our condo to get fresh vegetables. I wanted broccoli, asparagus, artichokes – Rebecca must have gotten tired of those because that’s all I wanted.
I was on antivirals, antifungals and antibiotics. I had to take them for almost a year after the transplant. There are no side effects to these but you have to take them. I took fairly high dosage of anti-rejection drugs for a year as well, including prednisone.
At the end of 100 days, they sent me a notice that my body has accepted the donor’s marrow. My donor is a woman, so my blood went from XY (genetic code for male) to XX (genetic code for female).
From his email with the subject ‘Lab Rat New Year’ (January 2014): Over 30 days since transplant and the only complication is elevated adverse kidney tests, which is being addressed.
My new goal is to walk a bit after every meal and to extend the distance every day. The real hassle is to see me work out with the three-pound weights. Used to work out with 35-pound weights and the whole thing seems ridiculous. Sadly I’ve lost so much muscle mass that this workout is now a “strenuous” workout.
I walk around with a respirator mask when outside, which makes me look like Darth Vader except the filters are pink. Please reserve your comments; we’re working on dark covers. …
Adversity makes us stronger but let’s not overdo it.
From his email with the subject ‘Bad Lab Rat’ (Feb. 9, 2014): It’s been 78 days since the bone marrow transplant …
I’m sort of worthless with chores as the tremors induced by the immunosuppressive drugs make me a liability to most all projects. One day when the diet was calling for clear liquids I was trying to eat some Jell-O and when I finally got it on the spoon it looked like a 9.0 earthquake trying to escape from the table. Accordingly my manners have suffered a bit. …
From his email with the subject ‘Lab Rat Cheer’ (Feb. 21, 2014): After 90 days of limited access to virtually anything while we waited for the transplant to do its thing, the preliminary result came in today. … While leukemia may never be “cured,” I’m within the range of total remission. This means I can return to an almost-normal life . . .
The real pleasure the other day was that I could take off my filter mask for a few minutes and I could smell perfume and flowers. After eight to nine months without scent, it is amazing to regain. So pardon me if I sniff a bit when I see you. Just seeing friends will be a visual and emotional delight.
How were you feeling when you came home? When I got home, the word was “mindful.” I had to be mindful about moving, about everything I did. I had chemo brain. I worked on getting my muscle strength back, getting my weight back up. I was as skinny as can be. I was walking, exercising.
From a note to his donor (Aug. 10, 2014): I’m still getting used to the day-to-day experiences even though it’s sort of normal. There have been physical challenges and drug reactions but those are diminishing as I go along. Of course I argue with the doctors as I want to do more and more of normal life and they try to moderate my behavior to a more staid and “rationale” mode. I’ll win yet. …
From an email with the subject ‘Lat Rat anniversary’ (Aug. 17, 2014): Hard to believe that it has been a year since I started the Lab Rat discussion. It’s been nine months since the transplant and so much has happened: most of it good. The transplant worked and the leukemia is gone.
One setback is that the experimental treatment or the intense chemotherapy induced what the doctors call heart failure. … With drugs (more damn drugs) the process can be managed so that I have an almost normal life span. …
Please make an effort to enjoy every day; it’s what it’s all about.
Do you still take any drugs related to your illness and transplant? I’m on zero meds related to leukemia or the bone marrow transplant. But I was diagnosed with congestive heart failure (CHF) so I’m on medications for that. I don’t like that term, congestive heart failure. To me, failure is a binary – either something works or it fails. But congestive heart failure is not like that; your heart is still working but not as well as it should. I think CHF should stand for Compromised Heart Function. …
I’d like to be more clear-headed so I would like to take fewer medications. I’m always trying to get my dosage decreased.
Do you have any other lingering effects of your treatment? One side effect is neuropathy – I can’t feel my right foot. I can’t dance as much as I used to. I was dancing with a friend recently and I was stepping on her feet and I didn’t know. …
The prednisone I took led to my medical experience at the beginning of 2016: I had my hip replaced in January. Prednisone restricts bone growth and I had to get a new hip. When I had the surgery, I asked how long it would be before I could go surfing. He said four months. So we went to Hawaii in May, and I was able to surf. Not well, but I got up on the board.
Are you still monitored for leukemia? I have blood work once a quarter but I’m now cancer-free. Can it come back? Yes. Nothing’s perfect. I know I’m going to die sometime, but not today.
From an email with the subject ‘Lab Rat 18 months plus’ (Aug. 16, 2015): It’s been almost a year since I’ve updated the Lab Rat stories. It’s even a surprise for me. My health has continued to improve so that I can do almost anything.
Are you in contact with your donor? We write once a month, off and on. She lives in Southern California. She and her family have visited us, we’ve seen them in Redding.
When I met her for the first time, it was like looking in a mirror through the years. We have the same skin color, the same hair color, the same eye color, the same shape of the face. She’s a sweet lady, very bright. She has two little ones.
Donating is very easy for the donor. It’s almost painless in all aspects. Go to Be the Match. It starts with a cheek swab. My donor had done it back when she was in college and 10 years later, they found her when we matched. We were a perfect match on the 10 factors they measure. It’s totally a function of being descendants of European white trash (laughing).
What’s your life like now? I’m spending time at my ranch, working on my tractor, fixing things. If I had to live the life I was living in Mountain View – no thank you. I can do anything short term, but I like to be active, doing things, and I couldn’t do that then.
Were you changed by all this? Not really. I think I became more optimistic. If I can do it, virtually everyone can do it. I paid a little price – some time, some inconveniences – but I’m cured. …
One change is I don’t get angry any more. I may get frustrated, but I don’t get angry. When I’m out and someone does something stupid, I may get frustrated but I don’t get mad at them.
From an email with the subject ‘Lab Rat surfs’ (May 11, 2016) – accompanied by a photo of Roger surfing, shown in the January issue of Benicia Magazine: A goal from the beginning of my medical adventure was to return to a normal life. Today I achieved that. While here in Maui I did it. So much for so long but patience paid off.
What have you learned? Life is to be lived – enjoy it. It’s all about relationships. I think that’s just been reinforced.
Never give up – never give up. I learned you have to be assertive with your medical care or they will shunt you to the back of the line. You gotta be able to ask, you gotta be able to demand, and you gotta be able to say no.
I also learned to appreciate the people who love you and put out as much kindness as you receive.