Bone Marrow Biopsy Day

Today I underwent a bone marrow biopsy. Actually two of them, one within each iliac crest. I was told that as a patient I am a bit of an anomaly as I undergo this procedure with only local anesthetic. For me this testing is a bit like going to a dentist – which I just did. Lidocaine stung as it was inserted and then I felt only pressure. I was told the samples were adequate and now we wait for the pathology report.

My back is sore, although in keeping with our stay active principles, Sharon and I went out on a 4+ mile walk treating ourselves with a soft serve ice cream when we returned back to our apartment.

Tomorrow we will visit the Amazon Sheres. We have walked by these many times over the years and there are limited tickets only 2-days a month. We were lucky enough to get tickets. They were as tough to get as a hot concert ticket.

The weekend is going to focus on rest and relaxation. Hope yours is the same.

Larry and Sharon

https://www.seattlespheres.com/

Mind and Body

Many visits today for mind and body. We started with a visit with our “team.” They were satisfied that all is going well. We have a slight bump chasing a PET scan area in my stomach area that “lit up” and I will have an abdominal MRI this coming Monday. The team did not seem concerned. They also reported my kidney function is good as is my heart. We met with a nutritionist who suggest adding protein to my diet.

At the end of the day of visits I had a full set of lung function tests. The technician told me on the side, that all looked good. Check off another box.

Sandwiched in the middle of these body visits we had visits for the mind. One visit was with a Spiritual counselor. She was excellent, listened to our needs and as we told her we honor the Shabbat each Friday night she realized we could not light candles when I am hospitalized and and hour or so later we received battery powered tea lights. Very impressive.

Lastly we visited with the social worker on our team. Also very well received and offered her support as we need.

All in all a good day. Tomorrow morning I will undergo bone marrow biopsies, not one but two, one in each of the iliac crests of my pelvic bones. Sharon and I have been walking daily 3-4 miles a day and I am going to need to slow down a bit in the recovery from this procedure.

More to come as the process ramps up.

Larry and Sharon

Dental Health

It is a hidden fact that good dental health is essential to avoid side effects from a bone marrow transplant. Reason being is that a carrie (cavity) contains bacteria. If the immune system is suppressed these hidden treasures may be released and cause much harm.

Knowing this, about 6-weeks prior to arriving here I went to my dentist and received a new crown and fixed an old filling.

Included in my prep workup is visits to the oral health clinic. Lo and behold, yesterday they found a subtle new cavity leaking out from one of my old fillings. Without fixing this the transplant could not proceed.

So this morning I paid (literally had to pay) a visit to a recommended local dentist who was very kind and repaired the tooth. One less problem to have to worry about.

When I was a medical student in Chicago at Cook County Hospital in the mid 70’s, one day I had to have my required annual screening for tuberculosis. I came up positive and was treated for just under a year with an antibiotic against TB. Again, another hiding infection risk for a transplant.

Good news today is the specialized test to see if I had any TB lurking within me was negative. Check that box off as well.

As Arlo Guthrie sang in “Alice’s Restaurant” they are leaving no parts of me untouched.

I had the afternoon off today and Sharon and I took a walk around a place in Seattle called Greenlake. It was beautiful and peaceful.

Arrival

Sharon and I arrived in Seattle a week ago to begin the process of preparing for my bone marrow transplant treatment. So far so good. Initial lab work (25 tubes of blood taken) was normal. PET scan shows that I continue to be in full remission from my leukemia. The countdown has begun.

The plan is for more testing over the next 10-days including blood testing, pulmonary function testing, bone marrow biopsies, many consultations – dental, nutrition, social work, Infectious disease and pulmonary specialists etc.

Assuming no red flags are raised the fun begins on Thursday the 25th of May when a central line port will be inserted into my chest. The following five days will consist of 4-days of conditioning chemotherapy and 1-day of total body radiation.

The transplant infusion (referred to as “Day Zero”) of my brother’s donor cells will take place on the 31st. I will be hospitalized 3-days after the transplant, or sooner depending on side effects from chemo and will be an inpatient for 2-3 weeks.

It goes without saying that we are anxious. At Fred Hutch there is a team approach with rotating attending physicians. As we were talking with our current attending, I asked her not to sugar coat the risks and rewards of this transplant. We were dismayed when she told us that based on my history and previous treatments, the side effects and mortality are probably higher than what we were previously told, and the odds of a total cure are most likely less than we had hoped.

Having said that, this is where the rubber meets the road as I am running out of options. The compassionate medication that is currently working is predicted to lose its effectiveness within 6-12 months from now. If that would occur the option of a transplant would be gone, and we would metaphorically be grasping at straws. Our perspective is that we are all in. There is a proverb to not look a gift horse in the mouth. The gift is priceless – a perfect bone marrow match from my brother and a chance for a cure.

From today going forward, I will do my best in posting daily updates to this blog Please check here for updates as I will not be sending email updates. Feel free to email Sharon or I if you have questions, thoughts, or just want to find a time to chat.

We anticipate residing in Seattle through September 30. We hope the summer will treat you well and so very much appreciate your caring and support.

Sincerely,

Larry and Sharon