The Next Mountain to Climb

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...

A better day calls for a more light-hearted tone… There are some positives to share tonight. Firstly, Kristi finally accumulated enough “Stanford Points” to get an upgraded to a Jr. Suite. Just kidding!  Her first room was in what seemed like the bowels of the old section of the hospital. For whatever reason, they moved her to a fifth floor room in the new section. She’s been here before, but instead of a nice view of the hills across the Bay, she has a western view of the coastal hills. It really is nice — too bad she’s not really in the mood to enjoy it.  Secondly, her blood sugar is back up to normal and being monitored. It was dangerously low yesterday and probably had been low for some time — remember, she hasn’t eaten since Friday. I first noticed Sunday morning when we went to the Reedley ER that she seemed a little dazed and confused — hindsight really is 20-20.  By mid-afternoon yesterday she was experiencing diabetic coma-like symptoms and behavior. Th...

Kristi had some tests done today and had doctors visit to review what’s been happening and next steps. I wish I could report that she is resting comfortably … but she’s resting. The use of the nasogastric (NG) tube, which goes through the nose into the stomach to relieve pressure and suction out fluid buildup is not comfortable at all. But it is an important part of helping the bowel rest and possibly recover without surgery. The doctors reviewed the CT scan from Reedley Hospital and confirmed that it provides the information they need for now, so they’re holding off on another scan. Since Kristi’s vital signs and lab results are stable, the plan is to wait and see if the obstruction resolves on its own over the next couple of days. This approach—called conservative management—is standard when the bowel appears viable and there are no signs of infection or perforation — all good news. During this waiting period, Kristi will stay on IV fluids for hydration and electrolyte support, sin...

I brought Kristi to the Reedley ER after having ongoing vomiting and abdominal pain (both unusual for her) for the last 24 hours. A CT scan showed what appears to be a partial bowel obstruction. Because of her complex medical history and treatment background, and per our request, they decided it would be safest to transfer her to Stanford Hospital for specialized care.  We won’t leave Reedley until Stanford has a room ready and gives the green light   A bowel obstruction means that part of the intestine has become blocked, which prevents food and fluids from moving through normally. It can cause pain, nausea, and swelling. In Kristi’s case, it’s very possible that this is related to her recent surgery or scar tissue (called adhesions) from earlier abdominal procedures. These adhesions can sometimes form bands that cause the bowel to twist or narrow. At Stanford, the team will continue to monitor her closely and do further imaging to determine how severe the blockage is and w...

Yesterday Kristi had four subcutaneous tumors removed at Stanford. It was an outpatient surgery done under general anesthesia. All went well and she was busy from 9:30am to 4:30pm. Surgery lasted 90 min. — she was in recovery a while shaking off the drugs.  Three of the tumors were on her scalp and one on her bicep. Although not as invasive as an abominable surgery, she’s going to be sore for a few days. Thank you all for your concern, well wishes, and prayers.  DJ went with us to help out. Unfortunately we don’t have pictures to prove it, but we had an amazing dinner together Sunday night at Dopio Zero in Mountain View. They have phenomenal Neapolitan style pizza among many other good things. 

Kristi had a bit of a rough week this week. Monday when I got home from work and I walked in the house I immediately noticed that her face and lips were almost white. DJ was also there and had mentioned that she was looking pale. She also was feeling a little bit dizzy and hadn’t mentioned it until I got home. We immediately took her blood pressure and it registered 85/55 — way too low. After some consultation with the Stanford triage nurse via phone and then also getting in touch with Dr. Ganjoo, We decided to let her lay down and monitor her and only go to the emergency room if other symptoms developed.  They did not.  The reason for this low blood pressure is likely adrenal insufficiency, which unfortunately is caused by some of the medication that she has been taking. That means she gets to take more medication to counteract that and Dr. Ganjoo immediately prescribed yet another medicine that should get her blood pressure back up to a more correct level.  Unfortunatel...

 Kristi had her most recent immunotherapy's injection last Friday, and this round has been a little tougher than usual -- we were told the side effects tend to build up with each new treatment. By Sunday, as we made our way home from the Bay Area, the fatigue and body aches had set in, and she’s spent the rest of this week in bed. The delayed side effects gave us one great day on Saturday, though—we were able to head over to San Jose (Los Gatos actually) for a Reedley College football game. We had a good time and enjoyed some INCREDIBLE food. You must try Limón if you are in the Bay Area. Reminder: Pazopanib (Votrient) is the major component of Kristi’s current treatment plan. Unlike traditional chemotherapy that directly attacks cancer cells, pazopanib works by blocking the tumor’s ability to grow new blood vessels. Without that supply of oxygen and nutrients, tumor growth can slow down. The tradeoff is the side effects that come with it—Kristi often experiences deep fatigue, musc...

  This month brought another round of scans, and while some of the news is encouraging, I want to be straightforward: the results do show some progression of disease. The encouraging part is that the changes are happening more slowly again, and overall my doctors still consider my cancer to be largely stable under treatment. The PET-CT showed that many of my tumors have remained stable—what that actually means is that some grew a little and some actually shrank a little. Some showed more “activity,” while others showed less than before. Another piece of good news came from my recent blood work: my numbers were excellent and show that my organ function is strong all around. The brain MRI also brought us relief: there were no new tumors, and the areas treated last year continue to shrink little by little. Some of the changes the doctors see are thought to be the result of treatment and healing rather than new disease, which is reassuring. It’s never easy to hear that there is still p...

I wanted to share a quick health update with you since our visit to the ER at Stanford last week. ER Visit & Headaches Last week, we ended up in the emergency room because of some intense headaches I’ve been dealing with—sharp, constant, and hard to manage. At times, they’ve come with nausea and light sensitivity, making it difficult to get through the day. The ER team was wonderful—they gave me fluids, medication, and my oncologist bumped up my dexamethasone dose. Thankfully, even though I still have mild headaches each day, they are very manageable. A few days before the ER visit, I stopped taking Cabometyx (part of the immunotherapy treatment). Since then, my headaches have improved noticeably. After discussing this with the oncologist, she is going to take me off Cabometyx for good and probably put me on something I was taking before.  ECG (electrocardiogram)  Results As part of my ER visit, I had an ECG. It showed some minor changes—low QRS voltage and nonspecific...

We promised no update unless there was an update … so … Kristi developed a very severe headache and her doctor advised us to go to the ER yesterday morning. We went to Stanford where she received IV pain meds, steroids, and electrolytes.  Doc is going to have her take a one week break from the daily pill she takes as part of her current treatment regime — that was our request. We want to know if that is the cause.  Good news: she’s a new women again today.  We hope we can continue to dial things in for best treatment and least side effects. 

Kristi and I took the grandkids for three days to Santa Cruz this week. We had a fun time and it was exhausting. Kristi did pretty well. Took a nap on the beach the first day and powered through the second full day. She was tired and had a headache on the way home. For the most part, she kept up with the busy few days — and we had fun.  We did some research on the way home and decided to change the timing of her daily meds. Since being home and the change she hasn’t had too bad of a headache. Fatigue is always an issue, but at least one that has a simple remedy, sleep. It’s to be expected — mostly side effects of the treatments and probably some from the cancer itself.  The immunotherapy treatments will continue — the doctor called it maintenance —a shot every four weeks and the daily pill. She’ll have scans again in three months. Until then, we expect and hope for no news. So, we won’t likely post unless there are any changes.  As usual we take things one day at a time, ...

Kristi had both head and full body scans on Monday.  There isn’t much to wax philosophical about.  The doctors called it fairly stable and want her to continue with the immunotherapy treatments.  At this point there isn’t much other choice.  Unfortunately, headaches have taken over as the most prominent problem. Some good news is her back pain has become less of a problem in recent weeks.  We shan’t even try to venture a guess as to why.  She saw her pain management PA today who thoroughly discussed the headaches, prescribed a new drug to try, and will reach out to Dr Ganjoo to fill her in on the problem. Although it may not seem like it from the tone of this post, we were pretty happy about seeing some shrinkage of tumors, especially in the lungs.   Having cancer is one thing, suffering from side effects of it or the treatment is quite another.  She does have days without any headaches — which we relish.  As usual now, we ran the results thr...