The Next Mountain to Climb

It is still implausible to me that less than a week ago we were wrapping up a 24-day vacation of vacations. After Kristi’s October surgery we worried that we might not even make the trip. But we did and it was incredible — yes, we took it slower than in the past, but we had no problems.   In hindsight it must have been Kristi’s sheer willpower that kept her going despite the disease beginning to overwhelm her body. It was only after the release of being home — just 18 hours after we got home — that she allowed herself to feel the burden.  I’m not known for making the most responsible financial decisions. For this trip I had the opportunity to upgrade our flight to Paris to first-class, something we’d never done — I surprised Kristi with the news the day before we left. While I felt guilty about spending the extra money, again, in hindsight, I’m so glad Kristi was able to fly to Europe in such comfort.  Kristi has rested comfortably all day today. She is mostly unresponsiv...

Just four weeks ago Kristi walked a one-mile length of the Champs-Elysees This was just last week, Dec 23 — the last day of our trip, enjoying the coldest coconut water possible. Kristi seems to be resting very comfortably today — ever so slightly continuing a transition towards a time with no suffering.  Yesterday and this morning have been incredibly beautiful — yes, extremely difficult — and, incredibly beautiful. It is truly amazing to see someone who has lived so selflessly, receive the love and honor that she deserves.  As I sat in the quiet of this morning, the stillness permeated only by her gentle snoring, I thought about the amount of joy, heartache, struggle, and blessing that we have shared together and with so many. These words easily flowed and capture what is swirling around in my head.  As one life slowly fades, New life springs forth.  Even as one quietly rests, The young cannot contain their joy.  As we grieve, we rejoice in shared experiences....

Kristi’s pain is more under control than it was yesterday. A nurse spent a couple hours with us last night working on adjusting her meds. I use ChatGPT to understand complex medical uses and brainstorm what to ask drs and nurses. I asked it to help summarize Kristi’s current condition in order to accurately share with you all. This is the summary: “ Kristi  is likely in an advanced stage of her illness. Her cancer has progressed to the point where her body is slowing down and using most of its energy just to stay comfortable. Right now: Her pain is better controlled She is very weak and tired She is not eating and drinking much, which is expected She is talking very little, but she can still understand us and respond by squeezing a hand Her body is beginning to slow down normal functions, like urinating She is not in an emergency at this moment, but she is declining, and this phase usually means time is becoming more limited.” ********** I’m not suggesting that you should, but if y...

Merry Christmas and Happy new year to you all! Kristi and I were able to take a recent cruise vacation together, and overall it was an incredible trip — eight total countries, five of which were new to us. Aside from the pain Kristi has been living with and managing for some time, she did quite well on the trip. She had moments of energy, enjoyed the scenery and food, and was able to be present and engaged. We explored, played cards, ate great food, and simply enjoyed being away from appointments and daily routines for a while. We are very grateful we were able to make those memories together. We returned home on December 24 — we had a nice Christmas Eve with most of our family. On Christmas Day, Kristi’s condition changed VERY suddenly and dramatically. She spent the entire day in bed feeling unwell, which was a sharp contrast to how she had been just the day before. Later that day, she developed a low-grade fever. Given how quickly and significantly her condition shifted, we decided ...

I would like to give a little update regarding surgery, recovery, and treatments. I am recovering quite well from the surgery. My abdomen is giving me very little trouble. My neck is still giving me a lot of trouble.  The treatment plan has had some hiccups and we’ve made some changes. I had hoped to have the five radiation sessions on my neck completed a couple weeks before Thanksgiving, but the final session ended up being just one week prior to Thanksgiving. I couldn’t start chemo until radiation was done. In addition to the radiation treatments running later than we expected, CCare in Fresno either didn’t or couldn’t get some of the chemo drugs in time.   Those two issues ended up pushing my first infusion appointment all the way to the day before Thanksgiving.  After much discussion with Jim and consultation with Dr. Ganjoo, I decided to hold off on any chemo until December 26, after our trip.  My rationale for waiting? This chemo is a killer; there is no e...

My recovery from surgery a few weeks ago is going fairly well. Each day I’m regaining a little more strength and mobility, which feels like progress worth celebrating. I don’t need Jim’s help to get in and out of bed or use the toilet! Last week, Jim and I met with my oncologist, Dr. Ganjoo. After reviewing my scans and talking everything through with us, she recommended trying a few rounds of chemotherapy to help again slow the progression of the leiomyosarcoma. Dr. Ganjoo confirmed what Jim and I had already sensed. There were no visible tumors in my intestines on the August PET scan, yet the tumor that caused the recent blockage measured 3.5 centimeters, and four additional new tumors—each slightly smaller—were also removed. And, other tumors in my liver, lungs, neck bone, and several other places showed significant growth and activity between August and October. Dr. Ganjoo didn’t sugarcoat things: the number of new tumors, how quickly they appeared, and their increased activity a...

I would like to give you all a very personal thank you. Three weeks in the hospital is a long time. I was there two day short of that, and each one of you helped me get through it—whether by sending cards, replying to this blog, texting me, or in a myriad of other ways. Several times, an uplifting meme or gif would arrive at the exact moment I was struggling to stay cheerful and positive. I won’t lie—there were tears. But again and again, something from one of you would lift me back up. There are too many individuals to name, which in itself is such a blessing. So, to all of you, thank you. Truly. I am also incredibly blessed to have had what I called my “hospital room care team.” These are the amazing souls who spent days and nights in that room so I was never alone. They talked with me when I was down, laughed with me when I was up, found shows for us to watch together, and helped distract me from the NG tube and the “no water” rules. They walked with me, held my hand when I shivere...

Kristi has been discharged! Our friend Carlos has been with her these last two nights. He is transporting her back home. If the traffic cooperates they should be here by about 6-7pm … after a bite to eat on the way.  Not much to say except we are all going to feel good about getting back to “normal.” Have a great weekend everyone!

Kristi’s gut really kicked into high gear today — what we’ve been waiting for finally happened! X-rays and CT scans confirmed what the clinical signs had been suggesting: everything is open and functioning from top to bottom. Equally great, the doctors decided to remove the NG tube — she’s completely tubeless for the first time in 13 days. While she still can’t eat or drink yet, I can’t fully describe the gratitude she felt toward the doctor when that tube came out. The CT scan did show a hematoma (a collection of blood outside the blood vessels) beneath the incision. The doctors aren’t too concerned right now but will be monitoring it closely, hoping it resolves on its own. We’re probably still a few days away from discharge, but things are definitely looking up tonight. Without the NG tube, she looks a little less “hospital-ey” — and a lot more like herself again.

As you know Kristi has had some big surgeries. None though have taken a toll like this one. We were trying to decide what’s different this time. We came up with two likely culprits. One: the fact that the surgeon had to move the bowels around a lot, cut out a section, and remove two other tumors, one upstream and one downstream from the resection — not to mention taking the gall bladder. What we’ve read is, that amount of manipulation can really shock the gut. Two: Progressing cancer and the pain that has come with it. The PET/CT Saturday showed progression that isn’t surprising but did surprise us a little. The pain in her neck — her actual neck, not me — has been increasing over the last two months; the tumor now seen in the last scan must be the culprit. This pain has been her primary pain over the last few days.  All that to say, while X-rays and clinical signs point to very slow improvement each day, she is tired — very tired of pain, and not eating or drinking, and being here...

After switching places with Emma and DJ for a couple of days, I returned to Stanford yesterday afternoon. Kristi continues to make very slow progress. I did some research and learned that surgeries involving the intestines typically take about three to seven days before they begin working properly again. She’s now five days post-op, and today we finally saw some encouraging signs that her intestines might be “rebooting.” I won’t go into graphic detail, but we were genuinely excited when she had her first bowel movement since the surgery on Saturday. Over the past two days, she has been sleeping a lot. When she’s awake, the majority of pain she feels isn’t related to her surgery—it’s coming from her neck. For about two months now, she’s had increasing pain in the lower part of the back of her neck. Since being here, it’s really been bothering her. We learned from the PET scan done on Saturday, just before surgery, that she has a new tumor on her C3 vertebra—that’s exactly where the pain...

Palo Alto enjoys some very nice weather year-round. And, Stanford Hospital is a beautifully designed and landscaped place. You don’t want to have to be here, but they seem to realize that an aesthetically pleasing environment can help with healing. As I mentioned before, her room has a huge window that looks out on a gorgeous landscape.  That’s her room from the outside: And yes, I have plenty if time on my hands right now. 😁 Kristi is resting fairly well this morning — and she is coherent and able to speak with nurses and doctors when they visit. Of course she’s having pain, which they are proactively managing. Although now she needs to recover from the surgery, having the gut problem fixed now gives a certain kind of relief. They’ve already mentioned a couple times that they want her up and walking a little today. Hopefully the NG tube will come out tonight or tomorrow morning. Although I think she’s quite used to it by now, she’ll be happy when it comes out.  She did ...

The surgery went well and lasted about three hours. Dr. Poultcides and his team removed the bowel section with the blockage/tumor. They also removed several other small tumors not yet causing problems. And, they did in fact remove the gall bladder which was inflamed.  Kristi is now back in her room. As usual she is pretty zonked out but doing well. She’s definitely in pain, but the first 6 hours after surgery are usually easier that the days to come — lots of residual medication and anesthesia.  The surgeon told me that it is likely Kristi will need five days in the hospital to recover. He said gut surgery is fairly invasive and of course they want to make sure she’s able to eat and get it all the way through her system before going home.  He also said it may be slow going for a while. I think he probably wants to error on the side of caution and not make any promises. Which, is a good thing.  We haven’t seen the PET report yet. I am anxious to see it as Dr. Poultcid...