Today was a step back day. Meaning my energy levels were not as good and have been complicated today by bad air here in Seattle. No clinic visits today so we went out on our usual walk wearing N95 masks. Unfortunately, the exposure to the bad air (listed as unhealthy today for sensitive groups) stayed with me all day. I have been coughing more. If the air is the same tomorrow, I will stay indoors. Although I want to get my steps in, 7,100 today for 3-miles, it is just not worth the irritation to my lungs, which are definitely susceptible. Besides, I don’t want to do anything that would risk our homecoming. It is a bit ironic that the air quality here is worse than in Sacramento. Otherwise, nothing new to report. Still waiting on final test results from the bone marrow biopsy. As soon as I know, you will be made aware as well.

Larry and Sharon

Another good day today in our march toward returning home. I had an appointment with the Pulmonary specialist who said I will not need supplemental oxygen for the airplane ride home, and in the long term will most likely not need oxygen at home. He reviewed my latest CT scans, my pulmonary function tests, and after some brisk walking around the clinic deemed that my lungs are working just fine. Not perfect mind you as I have had the condition of bronchiectasis since 2019, and for an almost 70-year old guy I pass. It was recommended that I see my pulmonary doctor at UC Davis upon my return, and I will arrange to do that.

I also had a session with a member of the long term survival team who checked my range of motion in my joints. Apparently, after bone marrow transplants some people lose their range of motion. Several photos were taken to document how I am moving currently and if I feel some tension in my muscles we can take photos and send them up here.

I received one set of results from my bone marrow biopsy, and good news is that in the flow study that they do, there is no evidence of my lymphoma. More to come on that, and I will take that as a positive.

Lastly we received clarity today that my final visit in the clinic here will be on Friday September 15. Assuming my first follow up visit in Sacramento will be on the 19th, we will travel sometime during the time period from the 15th to the 19th. That happens to coincide with the Jewish High Holy Days of Rosh Hashanah and frankly, whenever we can comfortable arrange the travel that weekend we will be winging our way home. A great start to the Jewish New Year.

Larry and Sharon

Today was a long day starting with lab tests – all stable and one thing of interest as my Triglycerides are quite elevated, we are told as a side effect of the immunosuppressive drug I am taking. Tonight I began twice a day fish oil capsules to tame this.

Bone marrow biopsy, the results of which will be known over the next week. Nutrition consult, very positive as I am eating more calories and my weight has increased. A clinical team visit, so positive and hopeful, and ENT consultation with a full audiology test – I like many my age have a slight high pitched hearing loss, and my ears are clear so I am cleared to fly home. Bottom line, of the day is that it was a huge pendulum swing today from where I was one week ago.

Meaning, as my GI symptoms have lessened, and my weight is up, the team decided that I do not need the upper GI endoscopy, and even better, unless anything new pops up, I will be cleared to return home after Sept 13. What I need is to confirm upon my arrival in Sacramento, a visit with my Sacramento oncologist and I was in contact with him today. I will be able to see him on Sept 19. Sharon and I will be making arrangements to return sometime between the 14th and the 18th. We are thrilled. Just when we thought my stay here would be extended, we are going to plan now over the next 3-weeks to return. I will have more consultations – pulmonary tomorrow, and next week a Dexa scan to look at my bone strength. A Covid vaccine has been scheduled. I will need a procedure to remove my central line port, and so on.

The scorecard is good, both clinically and stepwise. My emotions are all over the place. More to come as the results of today’s and future tests are available. It has been one wild ride.

Larry and Sharon

Today, we clarified some of the issues I wrote about yesterday. I had two clinic visits today. One was simple for a change of my dressing that covers my Hickman central catheter ports. Very easy. The other visit was a consultation with the anesthesia nurse in prep for the upper GI endoscopy we are trying to schedule. The visit went well and the procedure is now scheduled for one week from now on Aug 30. We were told that if biopsies are taken it usually takes 5-days for the pathology report to be finalized. Given Labor Day weekend I figure we will know after September 4th. That will be close to our day 100, and we still may be able to return home in September as we have anticipated. Just to be safe we extended our apartment move out date to October 10.

Tomorrow I have a long day of appointments, lab tests, bone marrow biopsy, nutrition consultation, my clinical team visit, and ENT consult. One of the blood tests that will be done will once again determine what percent of my brother’s donor cells are floating around vs my cells. Friday I will have a pulmonary consultation when I hope to get some guidance on the oxygen I am using at night. Also Friday I will have a visit with a medical photographer we assume to document any skin rashes I may have after the transplant.

The good news is that we are inching toward the finish line. Most all of the tests I need to make it home have been scheduled. My GI issues have seem to stabilized and my weight has come up from last week’s visit. Today, Sharon and I went out for lunch, a mini date if you will. We did several short walks today that do add up – 9,200 steps over 3.75 miles. Thanks again for your caring and support.

Larry and Sharon

Today was a pretty intense day, both physically and emotionally. The physical part was related to my IVIG infusion which I received with my usual premeds, and half way through I had a reaction similar to my very first infusion in 2020. Everybody came running, stopped the infusion and topped off my meds so in the end I received 100mg of IV Benadryl and 100mg of steroids. They were able to restart the infusion and it was completed. Although this afternoon I have been totally zoned out. I took a nap and feel better now. Not sure why this happened. I speculate my immune system is new and like the first time I reacted to the IgA. We will see how I do with my next infusion 4-weeks from now. Because of this, no long walk today except for up the hill and down the hill from our apartment to the clinic.

The emotional part of the day was related to the upper GI endoscopy I was scheduled to have tomorrow. While I was in the infusion room, I received a call from the group who scheduled my upper endoscopy and said they would only do it under general anesthesia, not conscious sedation, due to my lung issues to protect me against an aspiration. I appreciate their wanting to protect me, but it turns out there are no anesthesiologists available for my appointment so it was cancelled. I am wondering why did they wait to look closely at my case today and not last week when this was scheduled. Tomorrow I will now have an anesthesia consult after which they try to schedule the procedure. I am bummed. Today is day +82 / 18 bottles and if this is delayed, I worry that this will delay my return home and stress us out regarding what we do with our apartment rental which we have until Sept 30, prepaid. We rent through an Internet corporate company and we do not get first right of refusal to extend. The apartment is available Oct 1 and at the moment, anybody, including us can rent it. All prepaid. I am not so worried about the money, just the uncertainty and how the schedulers are approaching this. My clinical team says there are escalating this and I will leave it in their hands. I do not want any shortcuts. Just clarity and managing my expectations. We will wait to hear after my consultation tomorrow.

I appreciate your allowing me to express my feelings through this journey.

Larry and Sharon