The Next Mountain to Climb

My Stanford oncologist called at about 5pm on Friday; he received a preliminary report from the Stanford pathologist and he knew we wanted to hear any news as soon as he had it. They confirmed his suspicion: my lymphoma is Splenic Marginal Zone Lymphoma (SMZL). It is rare (less than 2% of non-Hodgkin lymphomas) and indolent (meaning slow growing). It is usually found in much older people. I guess I have a knack for finding the unusual.  How were they so wrong about the first diagnosis you might ask, as we have?  The rarity of SMZL is one factor. We also read that under a microscope SMZL can look like other lymphomas, such as DBCL.  We went to Stanford specifically because these features can lead to misdiagnosis. A common first line treatment for SMZL is a splenectomy. Since my spleen is the size of Jupiter (that’s just a rough estimate - 😁), that’s where we are headed next. A large portion of the cancerous cells are in the spleen, so removing that will resu...

This is just a brief update to let you all know there won’t be too much to update about for at least a few weeks. At this point, Stanford is still working on my updated pathology. The initial finding is that my lymphoma is indolent, or slow growing, probably not the Diffuse B Cell that was first diagnosed. As long as the full pathology confirms this, it will radically change everything.  While the doctors don’t want to speculate, they have set me on a course of treatment for what is called Splenic Marginal Zone Lymphoma (SMZL). It’s very rare (less than 2% of non-Hodgkins lymphomas). They won’t say that’s what it is just yet, but they seem to be leaning that direction.   It’s hard to say whether we’d rather have the DLBC or SMZL if we had to choose one or the other. They are different and neither is good.  Actually seeing my spleen is an important part of the absolute diagnosis. So, the one thing we know for sure is that I will be having an open splenectomy sometime in Ju...

We seem to have just as many questions now as when we set out this morning, but I guess there’s no better place to be than with the experts at Stanford when there are lots of questions.  Jim and I spent a good portion of this afternoon there with a Lymphoma specialist. We were referred there because Dr. Lemon told us that not everything about my case added up or even made sense for Diffuse B Cell Lymphoma (DBCL), thus the importance of seeing a specialist for a second opinion.  At this point, we don’t know much more than we knew before.  I do have Lymphoma, but Stanford is rerunning the pathology to confirm the type of lymphoma.  This is because I have not responded to treatment in the manner that everyone expected - i.e. my spleen is not shrinking which 2 rounds of aggressive chemo should have made happen if the lymphoma were DBCL as the original pathology report indicates. What this means is that we will wait to hear the pathology report from Stanford. ...

Today is six days out from my most recent chemo treatment. Monday through Wednesday of this week were pretty rough. I had a lot of nausea as well as pretty serious fatigue. However, Thursday morning I woke up to a fairly normal stomach. I was even able to drink coffee for the first time this week! That was definitely an improvement. Emma is playing in a softball tournament in Lincoln, CA, this weekend. A few days ago, I told Jim that I wanted to come with them. I mean, I can rest in my house, and still feel the chemo effects. Or, I can rest in a lawn chair, watch the games, and still feel the effects. At least this is a different venue and outside to boot. Although it’s lessening daily, the fatigue still hits me at odd times. Riding on the highway puts me to sleep. I slept on the way up yesterday, I slept on the way from our friend’s house who we stayed with last night to the ball park, and I will probably sleep on the way to the hotel tonight. This morning, I was fairly worn out b...

Leaving the hospital on Sunday marked the completion of 1/3 of my projected chemotherapy treatments. Somehow that sounds much better than 2 of 6, doesn’t it? Progress is being made! My spleen appears to have shrunk which is good news. I’ll be having another PET scan next week and we should know more about the overall shrinkage from the scan results.  Leaving St. Agnes on Sunday with her cute hat The chemotherapy effects are affecting me more severely this time around. I told someone this morning that they are “kicking my butt.” I find myself much more fatigued and lethargic than before. After the first treatment, I had this sense of “just get up and get moving, it’ll get better.” Today I am in a state of “I’ll lay here until...??” and I’m okay with that. Chemo side effects are akin to having a very bad flu: Aches, pains, nausea, etc., coupled with, at least for me, an overwhelming feeling of lethargy. The effects tend to compound with each subsequent treatment, so I am act...