I’ll take 2020 any day. During the pandemic all we could do was hunker down, wash our hands and await the development of the COVID-19 vaccines. I added to my Fiestaware collection and set the table every night for dinner. Swam laps, gardened and practiced Yoga. Jim played his ukulele, getting better all the time. We went to the store once a month and stocked up on everything. Made whatever we wanted to eat. We stayed in Texas all summer and didn’t travel in the bus at all. Jim didn’t even go for his annual physical since Doctor’s offices were a hotbed of activity and possible infection. More on that later.
Come 2021. We were both double vaxxed. We figured it was safe to get together with others who were also vaccinated. Slowly started to emerge. It felt good and strange at the same time.
Jim went for his physical in March 2021. When he got the results of his bloodwork his white blood cell count was very high. His doctor figured it was a flukey test and ordered another one. That came back high too. In a call with his doctor Jim pleaded with her to give him her best guess as to what could cause this. She didn’t want to answer him but finally said “Leukemia.” She recommended a Hematologist Oncologist and we scheduled an appointment. Off we go down the rabbit hole.
When we met with the Hematologist Oncologist he came back into the room with Jim’s results and said, “Not to worry.” He diagnosed him with CLL. Chronic Lymphocytic Leukemia, an “indolent” blood cancer that was very slow to develop and may not need treatment for years. Not the best news but I guess if you have to get cancer, a slow moving one is best. The doc said that something else would kill him first. And once he might need treatment it is a targeted immunotherapy, no chemo. So that’s good news. The doctor wanted to see him every three months so we made appointments and kept going.
One of the symptoms of CLL is fatigue. Jim started experiencing that after a few months. His spleen was also enlarged and keeping him from eating as much as he wanted. His white blood count kept going up. Finally, this March the doctor here said it was time to start treatment, just a year after diagnosis. Whatever, let’s get it rolling. But first we scheduled a trip to M.D. Anderson in Houston for a second opinion with a CLL specialist and a whole battery of tests. We planned on staying about a week to fit in all the tests and consultations.
Before going to Houston for our initial consult we were able to enjoy two weeks on the beach in Mexico. Then, since we knew Jim was going to need treatment he scheduled a prostate procedure in Austin. That all went really well and he’s glad he did it sooner rather than later.
Houston is exactly a five hour drive. We left on Easter Sunday and the traffic was light and we made good time. We got pulled over at the Falfurrias checkpoint, because of our South Dakota plates. Plus the dog barked. We have been through that checkpoint many times in the bus and they always waved us through. This time we had to get out of the car and wait in a separate area. The agents asked us why we were going to Houston and asked “Family?” We said no, cancer. They let us go after that.
M. D. Anderson lived up to its reputation. All the appointments were on time or early and we never felt like they were rushing us when we asked Jim’s ever lengthening list of questions. The CLL specialist recommended a clinical trial using a combination of three drugs. We just had to wait a couple of weeks to see which arm of the trial we would get in and whether it would require travel to Houston every time. Time for things to start looking up!
We got the tests all jammed into a few days and there were a lot of them! EKG, echo-cardiogram, CT Scan, Bone Marrow Aspiration, blood pressure, blood draws. I’m surprised he has any blood left. On the last day we had a consult with the CLL doctor and felt encouraged about the way things were going. We got away from the hospital fairly early and were back home by mid afternoon.
A few days later, right before we went to bed Jim received an email from the CLL doctor. Based on the second part of the examination of the bone marrow they discovered cells from a different kind of cancer, Splenic Marginal Zone Lymphoma. Even though the treatment for it is similar to CLL, we were out of the clinical trial and basically, back to square one. And he needs treatment. Oh, and it is very rare, like only 13 in 100,000 people get it. Two of every hundred non-Hodgin’s Lymphomas are SMZL. Not exactly a large study group .
It turned out that he had an appointment with his doctor here coming up on Tuesday the 26th. The doctor here had all the M.D. Anderson paperwork and confirmed that both CLL and SMZL are present but he said this makes the prognosis better. How he figured that I’m not sure. And the treatments are very similar. During the time we were waiting for the doctor Jim was able to get two appointments next week at M. D. Anderson to see a SMZL specialist and a cardiologist due to some fluid around his heart, common with lymphomas. Hopefully he will be able to begin treatment soon. They said he would almost immediately gain some relief and start feeling better. We are definitely looking forward to that. Of course, our Viking River Cruise in July is cancelled. We had moved it back from June but still wouldn’t work. We received a voucher to book within two years and our trip insurance covered the flights and hotel stays. He will be in treatment and we will most likely need to go to Houston during that time. First things first.
We have good cat care arranged. We could take the bus (and the cat) to Houston but we would also need to drive the car since we need it for appointments. And the car is a lot faster. You can make it a five hour trip since you can go 80 MPH. It would take at least two days in the bus. With diesel prices as high as they are now, we figured it would cost us $1000 to take the bus to Houston and back each time. So the money for hotels, food and parking is basically balanced out. And we didn’t really want to do all the gearing up for the bus trip that it would take.
We now have appointments at M. D. Anderson on May 2nd, 3rd and 4th. He has already talked to a specialist in SMZL, the lead researcher and a financial person. We will go to Houston May 1. He will have a PET scan for baseline markers, an appointment with a cardiologist and then the treatment will start on Wednesday! They say you start feeling better almost immediately so we are looking forward to that. M. D. Anderson doesn’t mess around. We are thankful that this little curve ball is straightened out and we can actually proceed. We are grateful that we have each other to lean on as we go through this.
Please keep Jim in your good thoughts as we navigate forward.