The Next Mountain to Climb

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...

This morning we woke early, ready for the PET scan only to find out it was delayed. One of the surgeons came to tell us that surgery would be today. It’s not an emergency — they would wait if they had to for other reasons, but in his words, “Let’s get this done so you can start healing.”   The PET scan was finished by 11:30. Kristi had just been all hooked up again in her room when the nurse told us that pre-OP was ready for her. They whisked her down to pre-op a few minutes later. I got to go with her.  The surgery will involve removing the section of blocked intestine, likely removing her gall bladder because it’s slightly infected, and looking around to make sure noting else might be causing an issue (e.g. tumors).  She left pre-op at about 1:15pm. It could be about 3-4 hours. I’ll probably post a very short update this evening once she’s back in her room. 

After these several days of a conservative treatment approach to the bowel obstruction with little progress, today another CT scan was ordered.  CT Results and Next Steps Over the past several days, Kristi’s care team has taken a careful, step-by-step approach to managing her small bowel obstruction. Initially, the doctors chose a conservative plan — using rest for the bowel, suction through an NG tube, and IV fluids — in hopes that the blockage might resolve without surgery. This is the preferred first step when possible, because surgery carries risks, especially for someone who’s had multiple prior operations and delicate internal healing. After several days, though, the obstruction hasn’t cleared on its own. Her NG tube continues to drain, and while she has some moments of relief, there hasn’t been lasting improvement. Given that, the team ordered a CT scan of the chest, abdomen, and pelvis to take a closer look at what’s happening inside and to reassess the broader picture of K...

Kristi had a very good day. And, is still incredibly weak. She has taken three short walks today — 25-50 yards each time. I really think it’s stress from the gut issues and not eating. All she really wants is “a big bottle of water.”  She’s still not supposed to eat or drink anything — but she sneaks ice and sips of water when she has the chance. We will laugh about it when this is all over.  Kristi had seemed to be making quite a bit a progress all day. She passed gas several times today and had two BM’s. Additionally, her NG tube was clamped all day long — meaning they were not sucking out bile and gastric fluids — and she hadn’t suffered any nausea or other ill effects. They are doing another gastrografin study — introduced contrast inter stomach through the NG tube with exists to follow. X-rays today at 5:30pm and tomorrow at 8am.  Her main doctor for this visit, Dr. Poultsides, the surgeon who removed her spleen a few years ago, came by at 4:30...

The news gets more positive — keep reading. 🙂 Kristi has had a rough few days to say the least; today isn’t any exception.  While there has been some slight improvement in her gut, the lack of nutrition (not eating) is burdensome. She is VERY weak and was somewhat delirious at times today.  While it seemed slightly comical at first, it is indicative of the stress her mind and body are experiencing. While she does seem to finally sleep a little, it’s only after some hours of misery.  Since Kristi hasn’t been able to eat or drink for several days, the doctors are starting (at 9:00PM) something called TPN, which stands for Total Parenteral Nutrition. It’s basically complete nutrition through an IV. Instead of going through her stomach and intestines, the nutrients go straight into her bloodstream through her port. Each bag is custom-made and contains everything she needs — fluids, calories, protein, fats, vitamins, and electrolytes — all carefully balanced and adjusted base...