The Next Mountain to Climb

The scans done in the last couple weeks finally made it up to Stanford and we had our first meeting with the surgeon who would like to remove the mass of the lieomayosarcoma. As you might remember, the mass is located in the far back of the abdomen and is attached basically to the vena cava and near the aorta. As the surgeon explained, these are the two largest blood vessels in the body, and therefore make for a delicate and long surgery. Due to its location, they are going to have to remove a piece of both the vena cava and aorta in order to remove the mass. They will then reconstruct those two vessels. The surgery will be done at Stanford and recovery will be about 10 days in the hospital followed by a couple months of recovery at home.  At this point, it looks like this surgery will take care of the leiomyosarcoma.  Let’s hope so.  Gotta love back pain. Without my crazy back pain this mass, and maybe even the Lymphoma, would have gone unnoticed. We are thankful that th...

Kristi had her video call with the Stanford Sarcoma specialist this afternoon; the discussion was quite encouraging. Three things are important to note and share. First, everything she told Kristi will be shared with and confirmed by a team of doctors after a few more scans and tests.  Second,  the doctor is calling the tumor grade 1, which is the lowest (most favorable) grade. She thinks that what appears to be the swollen lymph node may actually be the primary tumor. It is in a very usual location for lieomayosarcoma and adjacent to lymph nodes, which can be confusing. She thinks that a surgeon can get in there and remove the tumor, possibly eradicating the cancer completely.  Third, she thinks, based on her review of Kristi’s past tests, that the back pain may simply be a ruptured disk in her lower back (which the Fresno doctor saw but said shouldn’t be causing her that much pain). She is going to consult with a Stanford back orthopedist but hopes that a simple surgery...

Well, buckle up for the next adventure. We finally received results from the biopsy that Kristi had done 11 days ago ... a prolonged review of the pathology is never a good sign. They found something that even her doctors seemed very surprised to find. The swollen lymph nodes in her abdomen (near her back) are not lymphoma at all, but yet another type of cancer called Lieomyosarcoma (in addition to Lymphoma; lymphoma is still there, but not a concern as it continues to be relatively stable).  Yes ... we were again shocked beyond belief. In fact, today seems like it’s been a week long.  After recovering from the shock and surprise yourself, you too probably have questions. We don’t have more information yet. Lieomyosarcoma has its own “sub categories” and those have yet to be determined. Nor has any stage been determined. Kristi will likely be scanned and prodded more than she’d like over the next few weeks. She has been referred to the Stanford doctors who handle this kind of ...

Hi All, just wanted to give you all a brief update. Kristi has been doing quite well for the last year and a half except for the nebulous back pain. It’s been getting slowly and progressively worse; she’s been on some big pain meds to cope. We went back to a Stanford last week to meet a new doctor who is taking over for the previous doctor who moved to a new specialty. This new doctor wants to get a biopsy of some lymph nodes in Kristi’s abdomen in order to determine if their recent enlargement is due to the lymphoma or not (very likely the answer is yes, but they want to be sure). This may determine whether some type of treatment, chemo or radiation, may need to be done. Bottom line ... the lymphoma, based on all scans, seems to be holding steady mostly (as they thought it would). The cause of her pain is mysterious. We will go up Thursday so she can get a COVID test so she can have the biopsy procedure on Friday. We will give another update as son as we have anything new to share, wh...

Well, folks, it's been over six months since my last post.  Plenty of great things have happened in that time:  I returned to my work as a teacher librarian in Selma Unified, our first grandchild, Amari, was born, we planned an exciting backpacking trip for next summer, Jim and I took a few short road trips together, and a myriad of other things.   The six-month point also marked my first PET scan since the lymphoma diagnosis.  I won't lie, I've been nervous waiting for the results of that test.  Our hope was for the words "the lymphoma is stable" to come out of Dr. Lemon's mouth.  We are joyful and thankful to report that this is exactly what we heard when I saw him yesterday!   We are thankful for all of the prayers that have been said and for all of our amazing, supportive friends and family who have and continue to support us through this journey. Of course, in typical Dr. Lemon fashion, he couldn't leave the appointment on...

Great news! I had my surgical follow-up appointment on Thursday. The surgeon has given me clearance to return to normal duties. A call to my oncologist with this information on Friday resulted in clearance to return to work on September 23rd. I am thrilled to be returning to work and more normalcy.  In addition to returning to work, the surgeon told me I could start yoga and working out at the gym again. This made me very happy as well. As you know, although I’ve been through plenty of treatments and surgery due to the lymphoma this summer, my back issues remain untreated. I’m excited to start exercising regularly again because in the past heavy exercise has actually helped to lessen the back pain. In addition to helping with my back pain, regular workouts and yoga have, over the past two years, become part of my important daily rituals. Being unable to complete a full yoga practice or go to the gym (too many germs in there for a chemo patient) has been a real struggle. I miss...

Well, my spleen is out and the results are in. I have an even more rare form of lymphoma than the doctors secondarily suspected. The final pathology, undertaken on the spleen after its removal, indicates that I have a lymphoma known as Splenic Diffuse Red Pulp Small B Cell Lymphoma (SDRPL).  In recent years, we have taken to using the phrase “Do the Most” to encourage our kids to put all effort possible into their endeavors. I guess my body decided to “Do the Most” when it came to developing a lymphoma. Instead of some run of the mill variety that could be corrected with a common treatment plan, I, instead, have SDRPL. This lymphoma represents less than 1% of known non-Hodgkins lymphomas. It is so rare that my oncologist (a lymphoma expert) at Stanford has never had a case before. It is so rare that the little known about it comes from case by case studies on individuals.  So I figure I’m the talk of the town wherever oncologists hang out.  Early on in this journey, I gav...

We are back home! It’s been a long week and we are thankful to finally be back. That being said, I must admit that Stanford provided as wonderful an experience as they could.  The staff at Stanford are pretty phenomenal. Everyone we encountered, from the surgery staff to the nurses on my floor to the food service and housekeeping staff had a smile on their face and exuded warmth and caring. Whether I was on a walk in the corridors or lying on the bed in my room, I had wonderful conversations and exchanges with those with whom I came into contact. There was one nurse who consistently checked on me when I was out for a walk. She wasn’t even a nurse in my area. However, she encouraged me and made sure I was doing alright every time she saw me.  As great as everyone was, I was definitely ready to come home by the time I was discharged. I’m looking forward to sleeping in my own bed and I’ve missed my family!  Our ride home turned out to be an adventure itself. I was...

Jim and I are back at Stanford. Last night, my gigantic spleen was removed. It weighed in at 6.4 pounds! A normal spleen weighs approximately five ounces. Congrats to Marlene H. who had the closest guess without going over.  Me in pre-op: Look at the shnazzy Stanford gown! Due to the size of the spleen, the surgeon had to perform an “open” splenectomy. That means that I have a lovely incision that flows from my rib cage down to about an inch and a half below my belly button. The amazing thing is that the stitches are inside which leaves what looks like a braid down my belly. My kids often ask me if I’ll ever get a tattoo. Now I can tell them that I have my own body art already!! Apart from it’s artistic qualities, and more seriously, I do find the incision to be quite fascinating. How do they tie the stitches off when they are inside the body?!?  As you can imagine, I’m on some pretty heavy pain meds. Prior to the surgery, the anesthesiologist came in and discussed the options...

Jim and I drove back to Palo Alto Wednesday afternoon. We met some friends for a leisurely dinner and then made our way to our hotel for the night. Yesterday, we met with a surgeon at Stanford to discuss my splenectomy. As with just about every medical professional I’ve encountered in recent months, his comment was that my spleen is “huge.” I told him that Jim and I have begun to jokingly refer to it as Jupiter, to which he responded, “That’s pretty close.” After a discussion of the pros and cons of splenectomy, we turned to the most pressing matter. How soon can the surgery happen? The poor surgeon started talking about “sometime in early September,” at which point I just had to speak up. As you know, this process has already consumed most of our summer and I am not the most patient person in the world. I’m ready to have the splenectomy, heal up and move forward. I want to feel better, I want to get back to work sooner rather than later, and I want to gain some sense of normalcy and e...

Before all of this Lymphoma stuff began, we had been meaning to do some backpacking this summer. Since I’m feeling pretty good and my surgery is soon, Jim and I decided to get away and at least do some day hiking.  It was quite an amazing experience and we are both feeling truly thankful and blessed.  Our adventure began Thursday afternoon after Jim finished his final summer school stint for the year. We loaded up and drove over Kaiser Pass, headed for Lake Thomas A. Edison (Edison Lake) and the Vermillion Valley Resort (VVR). Jim had reserved a tent-type cabin called a Yurt at VVR for three nights which gave us two full days for hiking. For those who don’t know, Jim worked as a cook at VVR for the three summers prior to us meeting in college. It’s not only nostalgic for Jim, it’s one of the nicest places to get away to in the high Sierra.  VVR is a great little resort. There’s a store, a restaurant, and they rent a variety of tent cabins, RVs, and the Yurt that...

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...