Larry’s Update – 529,600 minutes

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In the Broadway musical “RENT” the iconic song “Seasons of Love” opened the second act and became a hit performed by Stevie Wonder.

The main lyric – 529,600 minutes – are the number of minutes in a year. You may ask, so what?

The so what, is that as the calendar turns to June 1st at 12:30am, I will be celebrating my 1-year, aka 529,600 minutes since my bone marrow transplant. In transplant lingo, on June 1st I will be one years old and will be traveling to Seattle for four days of testing including receiving my baby shots. Meaning like any newborn, I will receive my first doses of DPT, Polio and many others. I will need to wait until I am two years old for my MMR. This should allow Sharon and I to break out of our bubble a bit.

The lyrics continue:

Five hundred twenty-five thousand moments so dear
Five hundred twenty-five thousand, six hundred minutes
How do you measure, measure a year?

In daylights, in sunsets
In midnights, in cups of coffee
In inches, in miles
In laughter, in strife
In five hundred twenty-five thousand, six hundred minutes
How do you measure a year in the life?

For me I have measured my year in segments. The first 100-days in Seattle were filled with trepidation, hospital stays, daily clinic visits for IV therapy and blood testing, 24×7 oxygen supplementation, and near deafness. In spite of all this, and as part of my relentlessness nature, I was bound and determined that I would make it home. Of course, Sharon was always at my side.

The second hundred days in our home in Sacramento, was founded on getting used to my new normal. I also discovered, that like a newborn baby who lost its mothers in utero immunity, I was susceptible to simple viral respiratory illnesses. My lungs were challenged, and my medical team was concerned. Lung inhalers of various strengths were started, and I improved.

The third hundred days unfortunately were interrupted by a ruptured lumbar disc that required surgery which added a second challenge for my recovery. My daily routine included a vigorous schedule of medications, physical therapy, and learning about a side effect of bone marrow transplant – Graft versus Host Disease, in that I developed symptoms in my eyes and mouth, both treatable with local medications that I continue to require to this day.

In all this, I knew my road to recovery was to stay physically active. I have a Peloton bike and running shoes. Beginning a few days after I returned home, I have not missed a week on the bike, now a 37-week streak. I don’t run anymore, but I do walk 2-4 miles most every day.

We have been buoyed by support from family and friends. Our social engagements have been limited.

The song’s lyrics continue:

Remember a year in the life of friends,

Measure in love
It’s time now to sing out
Though the story never ends
Let’s celebrate

Yes, this will be an ongoing story, and like a fairy tale, we hope for many years of improvement and a happy ending. All in all, a celebration.

None of this would be possible without the decades of research funded and supported by the Leukemia and Lymphoma Society. Dr Larry’s Team has supported these efforts for over a decade to the tune of $1 million dollars. We need to continue our efforts for those who will need this cutting-edge treatment that has benefitted me and others as well. Consider this as a pay it forward for those who may require treatment down the road.

In celebration of my first birthday please consider a donation to Dr Larry’s Team for Blood Cancer Research:

https://jcfw.fcsuite.com/erp/donate/create/fund?funit_id=1716

Sharon has been by my side through thick and thin. In spite of my needs, she has been able to pursue her artistic passion. Once again, her work has been accepted by our local Crocker Art Museum for its annual auction and now hangs in the museum. This piece has great meaning to us as the photo was taken at the Olympic Sculpture Park in Seattle. A place where we would walk to when I was up to the effort. The image is taken of a Richard Serra sculpture, named “The Wake” captured with incredible lighting. Ironically, or incidentally, this exhibit closes on my June 1st birthday. The image can be seen here:

https://bid.crockerart.org/online-auctions/crocker-art-museum/sharon-saltzman-wake-6218301

We look forward to celebrating many more “Seasons of Love.”

Sincerely,

Sharon and Larry

5-Months Old

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Yesterday I had a quiet celebration for my 5-month transplant birthday. All is going about as well as can be expected. I was able to discontinue my anti-rejection medications so now have fingers crossed that my brother’s donor cells will live happily within the new home I am providing.

I have received two Covid vaccines and next month on my 6-month birthday, like an infant, I will be eligible for a flu and RSV vaccine. In the meantime Sharon and I are still pretty much bubbled up waiting to break out next Spring/Summer.

We are happy to be home and enjoying the very pleasant Fall weather. Hope you are well and thanks again for your support and caring.

Larry and Sharon

Larry’s Update – Week 2 in Sacramento – The New Normal

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Recently Sharon and I watched an ESPN documentary featuring the basketball great Bill Walton. The title was “The Luckiest Guy in the World.” After watching the series, I do not doubt Bill thought he was the luckiest guy in the world.

However, after my recent lifesaving, and curative, bone marrow transplant I would submit that I am the luckiest guy in the world. How could I not be? After living with Chronic Leukocytic Leukemia (CLL) / Small Cell Lymphocytic Lymphoma (SLL) for the last 13 (and possibly 17 years depending on when this condition was first noticed), and running out of options for treatment, an allogeneic (donor) bone marrow transplant was the last resort.

You see, I have been living on borrowed time since 2015 when I began a series of clinical trials, many of which were one of a kind where I was a guinea pig. I called these clinical trials of one. Each one prolonged my life and after the compassionate use trial that began this past October, I was in a bind.

To receive a transplant, I needed a donor and up to the plate stepped my brother Dave, who as it turned out was a perfect match. Could I have been any luckier? In that I was turning 70 years old this year and Dave was 61, the transplant center locations were limited due to our ages.

I had been treated at Fred Hutch Cancer Center since 2019 having undergone not one but two CAR T treatments where cutting-edge immunotherapy was used to treat my condition. The first attempt in 2019 did place me into remission although the 2022 treatment failed.

Fred Hutch was invested in me and they offered me the transplant opportunity. I could not have been in better hands. Although they warned us that the risks were much greater for me, as there are very few people who have been treated with multiple CAR T therapies and bone marrow transplant.

In early May, 2023, Sharon and I relocated to Seattle to enter the bone marrow transplant program at Fred Hutch. Sharon was my constant and minute-to-minute caregiver monitoring me for small changes in my condition that might trigger my providers to make changes to my care plan. I started dating her in 1971 and we married in 1976. Could I have been any luckier to have her by my side during my life’s journey?

Fast forward to today and we are back home in Sacramento and I am now living with a new normal. That is the Big “C” – which stands for CURE. My leukemia and lymphoma is nowhere to be found.

The transplant journey was difficult and I am home with limitations. I am on immunosuppression medications and need to be very careful regarding personal contacts and exposure to large gatherings, especially indoors. My red cell count is low so I am anemic. My white cell counts are suppressed. My kidney functions have been reduced. We are hopeful that all these will resolve in the coming months. I have daily fatigue requiring afternoon naps. On the other hand, I am taking daily walks and have started to use my Peloton bike again.

I have been kept alive by medical research that began decades ago. Much of it funded by the Leukemia & Lymphoma Society. Since their inception they have invested $1.3 billion toward cures for blood cancers.

Sharon and I founded Dr Larry’s Team in 2012, the year I first ran the Boston Marathon, and since then our team has raised over $800,000 toward ongoing research. And that team has been of enormous emotional support for Sharon and I through all the treatments we have endured.

I understand there are many organizations asking for your donations. And at this moment I am requesting your financial help in pursuing treatments, and yes cures, for blood cancers by clicking here and making a contribution to our team today.

Yes, I am the luckiest guy in the world.

Sincerely,

Larry and Sharon

Week 1 at home

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I am coming to the end of our first week at home. So far so good. I have been out walking and unpacking, although still not done with that. I had an infusion of IVIG that went well and received my first set of lab results. The scorecard looks stable. My platelet count is great at 157,000, my Hb/Hct have come up a bit to 10.3/31, my ANC is steady at 800. My kidney tests are still a bit squeezed and my liver functions are normal.

All in all pretty good. I need to admit that while in Seattle at Fred Hutch I was as if under a microscope with my medical management. Here at home not so much. It makes me think that I will need to use my medical training to manage some of my meds. My local oncologist is out of town this week so when he returns next week and I see him, I think I will have more of a security blanket around me.

This weekend begins the Jewish Holy Day of Yom Kippur where we ask for forgiveness. I will ask for that in my prayers although will also thank G-d for my recent safe journey through this treatment. We wish the same good health for you.

Larry and Sharon

Medical Provider Handoff

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Today was medical provider transition day. I handed off my care from Fred Hutch in Seattle to Dr Shahabi at our local Mercy Medical Group. All went well. The doctor in Seattle had contacted Dr Shahabi so he was in the loop. Nothing extraordinary at the visit today on my exam. We discussed my medications, my follow up visits and my lab testing. The next set of labs will be this Wed along with my IVIG infusion.

Sharon and I have been unpacking slowly. It is amazing how much stuff we moved up and back. Having said that, this was not a 2-week vacation where we could carry our belongings in an overhead bin on an airplane. I have been walking around the 2-mile loop in Land Park. It is a lovely place and if one did not know how many trees we lost in the storm this past winter it looks great. To me, there is less shade than I had remembered. Next stop is to say hi to the giraffes in the zoo and let them know we are home.

Larry and Sharon