I made it to day +100. When I began this journey, first time last September, and this time in early May the 100 day marker seemed so far away. It is hard to believe that this day has arrived. It means I have passed the point of most likely mortality from the transplant, although I am not totally in the clear as GVHD can raise its ugly head at any time.

I am not in the same great shape that I was prior to beginning of chemo now 105 days ago. I have lost weight. My stamina is not what it was. I don’t feel as if I can multitask as I have been able to do for most of my life.

Having said that, I am here and barring any surprises this week will be home one week from today. I look forward to visiting with friends and family although will need to pace myself and hope everybody understands there is still a 9-month road ahead for recovery.

I have to thank my brother Dave who donated his cells and essentially saved my life. I have to thank my spouse, best bud, Sharon for her diligence in making sure the environment I have been living in is clean and for noticing every little change in me that could be meaningful. Of course the clinicians here ar Fred Hutch are heros who have been dedicated to my cure over the last 4-years.

The bottle countdown will be restarted tomorrow. Cheers to you.

Larry and Sharon

A laid back day, all things considered. I took a walk up the clinic to drop off a 24-hour urine collection and then stayed pretty close to our apartment. I have been putting in a lot of steps this week and felt like a day off was needed.

Next week is all set for my final appointments. I have the weekend off from clinic visits and will quietly celebrate day +100 tomorrow. That is a big deal. Some things in the last 100 days are a blur and with Sharon’s help and caring I made it through.

Next week I will have an infusion on Monday for my osteoporosis as well as a set of labs. On Wed we will have our discharge conference with the recommendations for my follow up in Sacramento. Thursday will bring my last set of lab tests here as well as the removal of my central line chest catheter. Friday we will have our last clinical team visit and then home on Saturday the 16th.

Our bottle countdown will begin this Sunday. Get your beer ready.

Larry and Sharon

The bottle countdown has restarted as we got one step closer to our journey home. Today I had a visit with the oral health team and was released noting no oral problems. They suggested I use a fluoride enhance toothpaste at bedtime and am cleared for the treatment for osteoporosis. Of interest is that unless I have a dental emergency, when I return home, I am to have no dental work or even a hygienist appointment until I am 1-year out from transplant.

In meeting with my clinical team today they also said I am cleared to go with final visits and staging next week. I have been taking a medication to combat CMV virus and that will end this coming Monday. I also take an antifungal medication to prevent fungal lung infections. As of tomorrow that will end. Next week my immunosuppressive drug cyclosporine will be placed on a taper schedule over the next 6-weeks, barring any incidence of GVHD. I can also cut back on my magnesium pills and it will be good to lessen the number of pills I take.

My scorecard is good today with the exception that my Hb/Hct dropped a bit to 9.9/29. That puts me squarely into an anemia state. This has not impacted my walking as I took two trips up the hill to the clinic and a total of 12,000 steps. Otherwise my platelets and wbc counts are stable. My kidneys are still squeezed although not as bad as earlier this week.

We have not yet begun to pack up, although after today’s visits we are motivated and will be packing and contact Apria home health to come pick up all of our oxygen equipment.

We will have one more hold in our bottle count to synch up to our last day here next week.

Larry and Sharon

A typical day. A visit to the clinic for a dressing change to my chest port. Our usual walk, a nap, and time spent reading the information on follow up care when we return home. There are so many warnings in the documents that I think if I read all of them ahead of time I might not have gone through this. Actually not. We were down to no other options so of course we had the transplant. Much of the documents spend time on chronic graft vs host disease (cGVHD). And the cautions we should take when home. Many of these I am aware based on the close to 100 days since the transplant. Meaning fatigue, organ system problems and the schedule of follow up care. One interesting statistic I read is that Fred Hutch at any one time is following 6,000 patients who over the years have had bone marrow transplant here. I will be happy to be added to that roster.

Tomorrow is a day with many planned visits. I will start in the oral health clinic to be cleared for discharge as well as the meds needed for my osteoporosis. I learned today in my reading that teeth are affected and need close follow up. After the oral health visit will be lab tests and then a visit with my clinical team. More to come tomorrow.

Larry and Sharon

A relatively quiet day. I was up very early for a hydration boost – 1/2 liter of saline to hopefully flush my kidneys. I won’t really know until my next blood testing this coming Thursday. Tomorrow a short visit to the clinic to have the dressing of my chest port changed.

I did take my walks today and got to my 10,000 steps. For better or worse, the walk went well and early in the afternoon, my fatigue settled in, so as has been my daily pattern a nap fit the bill.

Tomorrow I plan to begin to load up boxes that we will ship home. I brought way too much stuff for our stay. As it turned out, I found the outfits that gave me comfort over the last few months and stuck with those. We can only check so many bags on the airplane so UPS will become one of our best friends. More to come.

Larry and Sharon