The Next Mountain to Climb

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...

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...

Here We Go Again... Jim and I are sitting in registration waiting for “transport” to my home away from home for the week: St. Agnes Room 241 West.  Chemo round 2 will begin sometime this afternoon or evening. Please keep us all in your prayers. This is a busy week in the Mulligan household. Adding multiple days of chemotherapy to the schedule makes for even more adventure. 😜.  I probably overpacked again. I have books, puzzles, a Harry Potter coloring book and colored pencils (yes, honoring my inner fantasy nerd again) and numerous blogs to follow to keep myself entertained for the next few days. Chances are that I will probably sleep a lot and not get to much of it, but better to be prepared than not, right?  I don’t really have much more to share right now. I hope you’re all doing well and enjoying what remains of this spring-like weather. PS: while I’ll probably lethargic and sleepy at times, I’ll also be bored out of my mind. Don’t hesitate to stop by or call anytime...

Well, we finally got a little bit of good news Friday afternoon. The full bone marrow pathology report was finally back and the news was good. What I mean is that there was no bad news. The further testing showed that the Lymphoma cells are NOT a subtype that would have indicated a poorer prognosis. So, still Lymphoma of course, but not a worse type than we already know about. That being said, it’s almost time for the next round of chemo. I will be going back into St. Agnes on Tuesday, May 28th. It will again be the “good stuff” as Jim called it in a previous post: R-EPOCH. This is, as mentioned previously, a 5 or 6-day long series of chemotherapy infusion. In preparation for all of that time hanging out in the hospital room, I have my bag packed with books, magazines and puzzles. Thank you to everyone who has shared their favorites with me! In the meantime, I’m enjoying this beautiful evening on my back patio.

Well, it took longer than expected, but my hair has begun falling out in earnest. Time to make a new fashion statement...

We’ve had over an inch of rain in the last 24 hours with more on the way today and tonight. It’s quite the welcome change from our usual desert-like climate. Jim and I had planned to visit a botanical garden in Woodlake of all places. On waking, we thought that maybe we should postpone due to the inclement weather, but after our coffee we were ready to Carpe Diem! Woodlake or bust! While cancer will definitely get you in the end without treatment, with advancements, treatments are becoming ever more effective, but their side effects are what take the toll on one’s body. Antibiotics attack a virus and make one feel better within a day or two. Unlike them, in order to kill cancer cells, chemotherapy attacks all newly developing cells in the body usually making one feel much worse than they felt prior to the treatment.  The last few days my chemo effects have manifested much as expected. Tuesday was exactly as the oncologist predicted: I was dreadfully fatigued. Jim brough...

Home at last! I was officially released from St. Agnes this afternoon!! I’m so happy to be home. I’m looking forward to sleeping in my own bed tonight!  I have finally begun to feel the effects of the chemotherapy. I’m very pleased to not be suffering from nausea, but the fatigue is starting to catch up to me. I ended up napping yesterday and being generally slower than usual today. To give some perspective to the fatigue, I’ll share that I made an effort to walk laps around the oncology wing each day for the first few days I was there. I was happy to get in a couple of 45 minute sessions each day between my morning and evening walks. Due to the fatigue, yesterday I ended up stopping after a whopping 15 minute morning walk and getting back into bed. I slept for a couple of hours and spent the rest of the day sitting or lying down. Today, I made up for it by walking for...wait for it... twenty whole minutes before having to crawl back into bed.  After rest, the fati...

So far, the hospital stay has been fairly simple. I won’t say uneventful because a lot has happened in a short time. In our last post I was able to show off my sexy socks. Not long after we took that pic, my first chemo drug was given. It was a drug called Rituximab and it took most of the night for it to be administered. In fact, I woke up the next morning and it still wasn’t complete. That didn’t stop the hospital stay event train from rolling on though.  There was a doctor from the surgical area waiting to take me down for my port installation. A very entertaining argument was taking place. The Oncology nurses appear to be very protective and territorial over their patients. They did not want me to leave until the infusion was complete. The surgery staff wanted me to be wheeled down and the infusion to finish while they prepped me for surgery so I would not disrupt their schedule. After arguing for ten more minutes, the nurses relented as long as one of them was allowed to stay ...

Great news!   Our insurance finally provided authorization for my hospitalization and the first round of chemotherapy. I was admitted to St. Agnes in Fresno Tuesday night at about 8pm after going home after my PET scan Tuesday afternoon. Part of the treatment will begin tonight and before the rest I will undergo a small surgical procedure to have a port installed.  This is a small device that will provide the hospital staff with direct access to one of the veins near my collarbone.  They will use the port to administer the chemotherapy drugs.  I’m glad they are installing a port.   When I had chemo for my breast cancer years ago, the nurses would start an IV for every treatment.   That was A LOT of pokes with a needle!   The port takes the place of the IV, thus, I’m assuming, making the process a lot less uncomfortable. I’ve taken up residence for the next few days in room 256. I’m free to have visitors. Feel free to call or text. Maybe the best ...