The Next Mountain to Climb

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...

Since the last update I wrote myself, I’ve completed three immunotherapy infusions and I’m also taking a daily tablet. Fortunately, I haven’t experienced too many side effects this time around. I do deal with muscle and bone aches for about a week after each treatment, and I’ve also been having some intense headaches. We believe the headaches are due to the treatment causing my body to lose important nutrients—especially sodium and magnesium. As you know, I was actually hospitalized for a few days so the doctors could figure out what was going on and create a treatment plan I could follow at home. Thankfully, they discovered that my body was running low on these key nutrients. After receiving an infusion of sodium, magnesium, and potassium, the headaches became noticeably less severe and didn’t last as long—at least for a couple of weeks. Unfortunately, as those nutrients become depleted again, the headaches come back. So now, I get an infusion about every three weeks to help manage ...

Kristi is being discharged this afternoon. She continues to feel pretty good — especially compared to the last couple weeks. Doctors have given us a recipe of over-the-counter meds similar to the “cocktail” she received while in the hospital to help with reoccurring headaches if necessary.  The exact cause of the headaches has not been determined, but if one looks at the effects and side effects of advanced LMS and the immunotherapy treatments, it’s not that weird.  She’s feeling so much better, we decided to stop at our friend’s house for the night before heading home tomorrow. 

There is good news … keep reading.  Kristi continued to feel horrible Tuesday and Wednesday. She had a video appointment with Dr. Ganjoo late Wednesday afternoon — considering her continued poor condition Ganjoo wanted her to get to Stanford Hospital ER ASAP.  We left about 5:30pm and arrived at Stanford ER at about 9:30pm. They got her in a room so quickly. Over night they ran bloodwork, did an MRI of her head, and administered a cocktail of fluids, electrolytes, and medications.  By 8am today she was a different person. She’s even hungry and eating! The headache has all but fully subsided. The MRI — at least from what we can see in the report — shows only things we already know.  She has been admitted to the hospital — we think for observation, but we haven’t really talked to a doctor for a full explanation yet. Once she’s settled in a real room we should know more — she is still in an ER room.  We’ve said this before — while no one ever wants to be in the hos...

It seems like the side effects from the immunotherapy/enzyme blocker combination treatments have caught up with Kristi, and they gave us a little scare on Monday.  For about two weeks Kristi has been having unrelenting headaches, which seemed to ramp up over 4-5 days. The increase in headache intensity and a few other symptoms can be signs of a serious pituitary condition that can be caused by her treatments. Even though we had met with a doctor on Friday via telemedicine, Monday morning we were quite concerned based on our research and her symptoms.  We sent a message to Dr. Ganjoo, detailing what was continuing. Her team got back to us rather quickly and told us Ganjoo wanted us to go to a local ER for an urgent MRI.  Kristi’s bloodwork indicated very low sodium levels, also an indicator of the possible pituitary condition. So, after the MRI they gave her some IV fluids and pain medication. The MRI showed that there was just a little inflammation in the p...

As you all know, I recently had a full-body scan. I won’t rehash that data, but since then, I’ve also had scans of my neck, head, and brain. The results were a mixed bag. On the downside, a new lesion (tumor) has appeared on the exterior of my skull, and there are several new subcutaneous lesions. We already suspected these because I can feel them just by running my hand along my scalp. The good news is that the radiation appears to have slightly shrunk the tumors in my sinuses. And the best news? No lesions were found on my brain! Yesterday, I started my new treatment regimen. Instead of traditional chemotherapy, we’re trying immunotherapy. Essentially, two drugs are administered intravenously to help train my immune system to recognize and attack cancer cells—essentially enlisting my body to fight its own disease. Please don’t ask for further clarification; I don’t fully understand the process myself! 😃 There’s also a third drug—an oral medication I would take daily at home—that...

Jim and I had an appointment with my oncologist yesterday. She reiterated what we had seen in the scan results: the tumors in my liver and lungs are not super concerning yet. However, there are numerous new tumors in my muscles, on my scalp, and in various locations in my bones, particularly within my vertebrae. As we discussed the next steps for treatment, she proposed a combination of immunotherapy (infusions) and a daily pill that "disrupts tumor growth." In combination, these have shown promising results in approximately 30% of patients. While that may seem low to some, it is actually quite good compared to the success rates of chemotherapy treatments available for Leiomyosarcoma. I had some bloodwork done this morning, and we will see the doctor again in three weeks. At that appointment, we will receive a schedule for the immunotherapy treatments. Dr. Ganjoo is proposing a "novel therapeutic strategy." That means it's still not specifically approved for LMS...

When I was a little girl I used to tell my grandfather, Papa, about all the books I read and the fantastical places in those books. He told me, “You have wanderlust; don’t worry, you'll see the world someday.” Well Papa, I’m giving it one hell of a go!  A pic from our recent trip — standing in the smallest country in the world.  As many of you know, I had my full-body scan earlier this week, and we received the radiologist’s report today. The scans revealed growth in the existing tumors, along with the appearance of several new ones. While this isn’t entirely surprising, it’s still disheartening. I’ve noticed that some of the tumors on my scalp have grown significantly over the past few months, and I feared they might reflect what’s happening with the internal tumors as well. If you’re not familiar with it, Leiomyosarcoma is a miserable and aggressive disease. That said, I’m grateful that the tumors in my lungs, according to the pathologist’s measurements, don’t seem to have ...

Last February our friends Marylou and Cliff said they were ready to get their passports and go on a trip with us. We said, “Let’s go!” We decided on a cruise from Italy to Greece and Turkey. That has allowed us to spend some time in Italy before the cruise. After Kristi’s most recent surgery, at about the six-week-post-surgery mark, we weren’t sure we were going to make the trip. But just a couple weeks after that Kristi really improved. Her doctors gave her the go-ahead to travel — in fact they said, “Get the heck out of here!” — almost.  We are currently headed to Bari, Italy by train, getting on the cruise tomorrow. We’ve had a fantastic time with Marylou and Cliff in Rome and Naples (Pompeii) so far.  Kristi has done quite well. She’s had to push through each day, and has taken some naps, but all-and-all, she’s hanging in there. Thankfully, today is just a travel day — she’s feeling wiped out today. But alas, the pace will slow down for the next week. She can take a nap o...

Good morning! I hope this update finds you all enjoying the fall weather. Since I tend to feel chilly all the time, it gives me the perfect excuse to wrap up in a sweater and even a cozy blanket! I am happy to report that I’m pretty much back to my pre-surgery “normal” and I don’t have any scheduled appointments until late January. I’ll then have my next series of scans. I’m hopeful, as always, that they will show that the tumors are stable, or even better, that they have shrunk.  In the meantime, Thanksgiving is just around the corner. We look forward to enjoying a feast with a houseful of family and friends that day. I hope each of you enjoy the day as well. We each have so much for which to be grateful. In the spirit of the holiday, I want each of you to know that you’re part of my list of gratitude. Thank you for the support you provide to Jim, the kids and me. Thank you for your continued prayers and well-wishes. It’s very humbling to receive your messages, cards, calls and ...

It’s been about five weeks since my latest surgery, and honestly, I’ve lost track of how many surgeries it’s been—too many to count! Over the past few weeks, I’ve begun to heal, and my surgeons say everything inside my nose and sinus is looking good. Unfortunately, I did have a pretty strong sinus infection a couple of weeks ago that set me back a bit, but I seem to be past it. Now, I’m just dealing with persistent congestion, which is a common side effect of the surgery. It’s likely to stick around for a few more weeks, which isn’t great news—especially for a foodie like me! Luckily, my appetite is returning, and I’m slowly eating more. I’ve lost some weight, so one of my goals over the next few weeks is to get back to a minimum target weight. Along with the sinus surgery to remove the tumor, I’ll also be starting radiation treatments in the same area. The surgery removed about 70% of the tumor, and the radiation should take care of the rest. It’s comforting to know that at least this...