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Kathleen’s Story

Site created on September 4, 2019

It all started back during Memorial Day weekend 2017 when Kathleen’s back gave out and she collapsed on the bathroom floor.   We went to see our trusted Chiropractor who didn’t like a possible fracture line he saw in the x-ray. So, he suggested an MRI and referred us to his trusted orthopedic surgeon who upon viewing a second MRI immediately sent us to Hoag Hospital emergency room.

After further tests and a CAT scan, Kathleen was scheduled for surgery to repair the fracture in her L5 vertebrae. According to the surgeon, this was a relatively routine surgery to stabilize the lower back with a series of pins and screws. However, afterwards, the surgeon delivered the challenging news: Her L5 vertebrae has been destroyed from the inside by a tumor. So, two days later, she had a second surgery to clear out the remaining tumor and rebuild/replace her L5 vertebrae with a titanium “cage” that resembled a 1” steel pipe.

Our oncologist and surgeon characterized her condition as a manageable but long road ahead. Her back was stable and with therapy she has regained most of her mobility. The tumor appeared to be a singular myeloma isolated to the L5 vertebrae. They did five weeks of radiation just to be sure and then put her on a quarterly schedule of blood tests which could detect the presence of any abnormal plasma protein cells that are associated with a recurrence of the myeloma.

Her recovery has been amazing and life returned to normal in 2018, but in February of 2019, a blood test and annual PET scan suggested otherwise. Based on additional blood tests and a bone marrow biopsy, her doctor diagnosed Kathleen with “Standard” Multiple Myeloma. We don’t know what is standard about any cancer but he said this was not the most aggressive nor the least aggressive version and was very treatable.

Since then, she has undergone a Phase 1 treatment called induction therapy which is a lower impact pre-chemo therapy regimen (3 weeks on; 1 week off). The goal of this phase has been to gradually get the abnormal plasma cell levels down while keeping the good red and white blood cell counts up.   So, for the last 16 months, Kathleen has gone through multiple rounds with three different types of induction drugs.   Fortunately, no bad side effects other that difficulty sleeping due to the steroids that were part of the chemo cocktail. The doctor suggested that her abnormal plasma cells were "stubborn" to which I replied "no surprise knowing the hostess". But finally, in early June 2020, the third wonder drug seemed to do the trick and her abnormal plasma protein cells showed a deep response to the treatment.

So, now Kathleen is ready for Phase 2 which is a full bone marrow transplant (BMT) at the UCLA Medical center where Kathleen will be an in-patient for at least 2-3 weeks. First, there is a 1 week process to harvest Stem Cells from her bone marrow, clean them up and have them at the ready. Then, she will start a short (3 day) heavy duty, really nasty chemotherapy process that kills all her bone marrow and will likely result in full hair loss. The following day, the magic starts when the docs actually transplant her clean Stem Cells back into her which gradually rebuilds her bone marrow and immune system.

For about two weeks she will have a very compromised immune system which is why the procedure is done at the UCLA Medical center, one of the leading oncology programs in the country.   They are also very sensitive to the Covid-19 situation and have uber safeguards in place to protect oncology patients like no visitors including spouses :-(   After that, she will be able to move to the Tiverton Hotel which is adjacent to the Medical Center for 1 to 2 weeks until her immune system is strong enough so that she will be able to come home.

Since Kathleen can’t have visitors for several weeks and we are pretty certain she won't feel up to face timing, we will be using Caring Bridge as our communication hub for family and friends.   She also can't have any flowers or food sent to her so please think digital! Feel free to upload messages and all the (stupid) cat photos you can find; those always make her happy.   We will do our best to keep updates short and timely.

Thank you for visiting.

Marc & (Kathleen)

Newest Update

Journal entry by Marc Kelly — Aug 27, 2020

Day 7 at Home - Kathleen has been home for a week now and is doing well. We had our first post discharge checkup today and everything looked great. To help build her strength and counteract the "chemo-fatigue" she is staying hydrated and diligently exercising with long walks usually followed by long naps. Dr. Sarah has even allowed ONE glass of wine per day which Kathleen thoughtfully consumes with pairings for dinners.

The next major milestone in this journey is Nov. 5, 2020 which will be Day 100 post Stem Cell Transplant. The docs all say, that's when we will know that this was officially all worth it and the multiple myeloma is either gone or so beaten into submission that it won't come back.

So, this seems like the logical last journal entry for Kathleen's journey. It's been fun and meaningful to share the ups and downs. Kathleen has been a real warrior with a huge positive attitude which we believe will pay off.

On behalf of Caring Bridge, thank you to those of you who made a tribute contribution. Your generosity will help others through their journey as well. Thanks to the Docs: Nishan Tchekmedyian, our Irvine Oncologist and Sarah Larsen and Patty Young (our UCLA Doc Duo) for their expert skill and guidance. And thanks to the team of nurses, social workers and technicians who made all the SCT magic happen flawlessly. Damn good showing by all those Bruins.

And thank you most of all to our friends and family who read these journal entries, made comments, uploaded files, cracked jokes and let Kathleen know that she is loved.

We will miss this but feel free to reach out by text, email or phone to Kathleen at home.

Marc & Kathleen

Read More of the journal titled "August 27, 2020"

Her first glass of wine in 4 weeks

Back home with Kekei

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