These are the posts I dread writing. One of my closest myeloma friends, Sara Lathan, from Charlotte, North Carolina, lost her extended fight with multiple myeloma earlier this week.
I first met Sara after speaking to an awesome support group in Charlotte. Was it three years ago? Four years? They all seem to run together these days. Sara and I had an instant connection; it may have something to with her maiden name being Killingsworth. She always seemed to get a kick out of that. We may or may not have been distantly related, but she nicknamed me “cuz.”
Sara’s fight was difficult from the start. We exchanged a number of emails. I eventually wrote a post about her, calling her “my hero.” I admired her Southern grace and spirit. She was fun and unflappable. A wonderful, wonderful woman.
Posted on July 04 2015 by Pat Killingsworth | 1,318 views
Sara’s loving husband and caregiver, Toy, was amazing through Sara’s stretched out recovery. Sent home by her doctors to die, by the grace of God Sara was in and out of hospice a number of different times. Hospice doesn’t allow life extending measures; most nix any IVs or chemotherapy.
But Sara had an so much painful bone involvement, she left Hospice to stay on the standard of care therapy for someone diagnosed with multiple myeloma a decade ago: melphalan and prednisone in order to help with pain.
Like other patients I know, the combination worked! Sara responded to the outdated therapy. It didn’t make her lesions magically go away, but it did keep her myeloma at bay. What a blessing to have so much more time to spend with friends, family and Toy.
Just an aside, Sara isn’t the first patient I know that’s responded in this way. Something we might mention to our oncologists as we run out of therapy options and see him or her use the dreaded shrug; staring down at the chart, saying nothing and shrugging. I’ve already experienced it. Way too early, but like Sara, my time will come. When it does, I’m going to suggest the melphalan/prednisone combination. Guess Sara was a pioneer, too, possibly helping the rest of us extending our lives, too.
Thanks for that, Sara!
Thanks for being so positive in the face of death. Thanks for being so brave. Thanks for being my hero.
Here’s the last email that Sara sent to me last week. It explains a lot:
I entered Hospice on Dec. 6, here in Charlotte. I’m at home, and still doing “OK”, if you can call having around 25 fractures, the latest in the sternum, and being in a wheel chair all the time “OK”. I’ve been in the hospital twice in the last month, and came out both times worse than when I went in. The first time for the broken sternum and the second time for getting too much Dilaudid from the pain pump right before taking Methadone. The Home Health Care Co. we called, who was taking care of me, just said “go to the emergency room” where I spent 7+ hrs. That didn’t do much for the fractures, and neither did the x-rays and scans they tried to take later, forcing my now curved spine against a straight, hard x-ray. I was scheduled to take daratumumab a couple of weeks after it was approved by the FDA. I got out of the Hospital on a Friday, and was set up to start the dara the next Thursday at Levine, but after getting home and really seeing what kind of shape I was in, I started re-thinking that. Dr. Usmani, the myeloma specialist, and Dr Patt, the Orthopedic Doctor at Levine Cancer Center had told me the fractures probably weren’t going to heal, so if that were true, why would I put myself through taking dara when some of the “possible” side effects could be coughing and pneumonia; and I had a broken sternum? I don’t think so. I’ve been doing this for seven plus years now, not quite as long as you, but I’ve also been one of the “unlucky ones” who happened to get an unusual amount of bone issues, and now I’m literally falling apart. There are fractures in both femurs where they go into the hip, and fractures in the pelvis,as well as fractures all up and down the spine and ribs, some of which they “re-cracked” in the hospital moving me around. I just hope it all doesn’t collapse and paralyze me.
The Hospice folks have been wonderful with pain management, and I am confident they will continue to deal with it well as time goes on. They can’t give us a timeline, but Toy is such a great caregiver, I wouldn’t still be here if not for him. I’m OK with it, and don’t know that a drug like daratumumab, that only helped 29% of the people who took it, would have done much for me, anyway. You know I never had a stellar response to anything, anyway. Velcade didn’t do much for me when I took it first, it just stabilized me. After that Revlimid did the most good helping for 3 yrs+. After that Kyrprolis didn’t do much even when paired with different drugs. Then I turned down Dr Usmani’s Salvage Therapy (VDT-Pace) and went into Hospice once before. I went back to see my regular oncologist who offered low dose Melphalan, which worked for 5 mo’s, and I had to come out of Hospice to try that and then Bendamustine, which didn’t work. And after that I was set up for the daratumumab, but canceled. I was never eligible for an auto stem cell transplant because of the radiation they did after diagnosis for the large plasmacytoma they found in L-4. It pretty much wiped out the stem cells in the hip areas which is a big source. Even the bone marrow biopsy came back weird which is why I always had them in the sternum after that. I consulted with Dr Gasparetto at Duke who didn’t think the transplant was a good idea.
So here I am, not exactly having the happy retirement Toy and I had planned and saved for. Life sure can throw us some curves, can’t it? I’ll be OK, though, and so will you. In the end it’s what we believe and care about that matters. I don’t know if you’re a very religious person. I am, but don’t believe God micro-manages the Universe, and we’re not “chosen” to get sick; it’s just the luck of the draw. I love the little book, When Bad things Happen to Good People. It’s written by a Jewish Rabbi, though I’m not Jewish, and puts a different spin on things. Like sometimes there are no answers.
I’ve been following your posts. I hope the tandem works for you, and the maintenance drug keeps you stable until the next BIG one comes along. Hang in there!
Sara Lathan, your Cuz in Charlotte
Thinking about others, even at the end. Toy tells me she left a note for him to contact me once she was gone, which he dutifully did. It must be so hard for him, as it is for so many other friends and caregivers.
You can use this link to access Sara’s memorial page:
I love you, dear friend. You will be missed.
Feel good and keep smiling! Pat