The Next Mountain to Climb

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...

It's been just over two weeks since Kristi's surgery. She had follow-up appointments with two of her surgeons on Tuesday, and the ENT removed her nasal shunts. There's still some "packing" deep in her nasal cavity, but she doesn’t feel as congested anymore. She's still experiencing some headaches, but the surgeon believes those should improve as she continues to heal. We’re hopeful about that. Her vision has improved slightly and may continue to get better. She has upcoming appointments with her radiation doctor, along with additional scans, including another full body scan. We're hoping the CyberKnife radiation procedure can be scheduled soon. Since only 70% of the tumor was removed, the remaining 30% needs to be targeted. Although it hasn’t been finalized yet, the plan may involve five radiation sessions, one per day for five consecutive days. All of this will take place at Stanford in Palo Alto. Kristi is back on Votrient (chemo pills), and fatigue cont...

Kristi was discharged this morning. JFM (surgeon) saw her and gave her the all clear … after a parade of 11 residents (doctor students) started coming in at 6:30 … AM!  They got to learn some how. 🤪 She loaded into the car at 11:50AM and we were off.  While she’s bruised from some of the instruments that held her head in place and literally immobilized her eyeball, she’s relatively pain free in her head … but, it does look like she was in a bar fight and took a left hook to the eye.  Other prior pain is still an issue of course. She’s weak and fatigued, which is likely a combination of all factors, yet she’s feeling good enough to move around between rests. She’s tired of being in bed. The most irritating issue, which they warned her about, is the stuffed nasal passages and mouth breathing.  She’ll be taking it as easy as she needs to for the next couple weeks. Radiation will likely follow soon, but how soon is to be determined. Dr. JFM said that because they stayed...

We watched the new Stanford Hospital get the finishing touches in 2019 as we visited the old hospital during Kristi's first visits after her Lymphoma diagnosis. While she had her primary LMS tumor surgery in the new hospital in 2021, I had forgotten how nice it is. Every part of it has been designed for both state-of-the art medical care and aesthetics, which studies show can be a vital part of physical healing. The public areas incorporate some art, the layout affords amazing views from all patient rooms, and the auxiliary services -- like the cafeteria -- are located in easy to find locations. The cafeteria, by the way, is pretty good -- and that's coming from a self-described foodie. They must have had a very integrated, multidisciplinary planning team assembled from the very start when they decided to build. Yes, we're still in a hospital for not-so-great reasons, but the niceties and views do have a positive impact on the experience.  The view from Kristi's...

The surgery to remove her primary tumor in May of 2021 was about 7 hours … today she was just short of a new personal record. Today’s procedure lasted about 6 hours and 40 minutes.  The surgical team — lead by (Dr.) JFM, as he is affectionately known, and included a second neurosurgeon and an Ear-Nose-Throat surgeon — was able to remove about 70% of the tumor.  The tumor had, in fact, enveloped the optic nerve and interior carotid artery. It had not invaded the membranes that surround the brain.  Why just 70%?  The goal of this surgery was not curative, or to remove the whole tumor. It would be way too risky considering the optic nerve and carotid artery involvement. The goals were twofold: to relieve the pressure causing the blurred vision and headaches, and to reduce the mass enough that radiation might be effective on what’s left. Sometime after healing she will have the Cyber Knife radiation treatment.  While she doesn’t have any big, visible incision, her r...

We often joke about the fact that Kristi attracts the absolute best doctors. While it's great that most of her doctors/surgeons are world renowned, among the best in their fields ... we also think it indicates the critical nature of her medical issues. It's kind of a double edged sword.  We are thankful beyond measure that we have access to these medical practitioners.  The surgeon who will be in charge of the team for this next surgery is Juan Carlos Fernandez-Miranda ... take a look at this biography if you're interested; it's pretty impressive: Dr. Fernandez-Miranda Biography The tumor in her nasal cavity has more than doubled in size in the last year.  While it won't be confirmed Leiomyosarcoma until after the surgery, everyone knows it's probably LMS. It's sitting in the area behind her right eye and wrapped around the optic nerve. While it is adjacent to, it is not surrounding the carotid artery -- some of the good news. Dr. Fernandez-Miranda said that...

On Monday Kristi had a MRI of the just her head.  She has never had a scan of just her head.  She’s had full body scans that include the head – but those scans do not do a good job of seeing things in the head, especially the brain.  So, when she began having headaches and mentioned that to Dr. Ganjoo, Ganjoo ordered the head-only scan.   The good news is that nothing that we didn’t already know about was found; nothing in the brain – which was the best news.  She does have some cutaneous tumors on her scalp and we’ve been watching a tumor in her sphenoid sinuses (that’s the sinus area between and around the eyes).  That tumor has grown steadily over the last year or so and has encroached into the area at the rear of her right eye.  It is pushing on the optic nerve.  This has likely caused her vision to become blurry and may likely be causing the headaches.   So what’s next?  We had a video appointment with the radiation doctor today....

Good morning. Since we last wrote, there have been a few changes to my health and treatments.  The surgical incision seems to be healing well. My two HNs (Home Nurses as I jokingly refer to my mom and mother-in-law) have been doing a great job. The wound has to be flushed with saline and “packed” with medicated gauze twice a day. The HNs have worked out a schedule, going so far as to create a calendar that ranges out two months into the future (yes, it’s going to take that long to heal). I see the surgeon tomorrow for a check up. I have very little concern that they will find issues.  One thing that does slow the healing process is my chemotherapy. At our last chemo update, we told you that I would be receiving chemo infusions of a chemo drug that was new to me. I did get one infusion before the abscess appeared and had to be removed. The second infusion was postponed due to the high risk of secondary infections. The side effects of the first infusion are still lingering, even...

After the ER visit, surgery, and a few days at St Agnes Hospital, I’m almost back to my normal. That means the bacterial infection — which turned out to be Staphylococcus aureus — has cleared up.  Yesterday was the first time I’ve seen the oncologist (Fresno) since I had the surgery to remove my abscess. He ran my bloodwork and checked the abscess and it’s healing. After all of that, he decided to wait another month before my next chemo infusion. There are a couple of reasons for this: Firstly, he wants my body to focus on healing the wound. Secondly, due to the wound, I am at much higher risk of secondary infections than I would be otherwise. So, he decided it would be best to wait on the chemo.  He wasn’t able to speak with Dr. Ganjoo at Stanford, but put in a call. He thinks she will agree.  While we both agreed that the chemo is important and neither of us likes the idea of taking a month-long break, an infection would be very dangerous for me. All things considered, ...

While undergoing chemo, a fever of 100.5 is considered an emergency. The development of sepsis from an infection because of a compromised immune system is the fear.  Kristi went to the ER at St Agnes last night because she developed a subcutaneous infection — presenting with an abscess and fever. Early this morning they decided to admit her for IV fluids/antibiotics. They will also be draining/removing the abscess. They have not yet determined if it will be a bedside procedure or operating room procedure.  The good news: she is at the hospital and things seem to be under control at this point. She will probably be there for a couple days at least.  I will send another update after she is discharged hopefully in a few days.  *Update to the update — she’s on the afternoon OR schedule for a simple surgery to remove the abscess. 

We are one week past the first infusion of Doxil (liposomal doxorubicin); it's a special version of the doxorubicin that it less destructive to heart muscle.  Doxorubicin is nicknamed Red Devil.  Red because it has a reddish color and turns the urine reddish for a while.  Devil because the devil himself probably wouldn't wish it upon his enemies.  It's a powerful chemotherapy that Kristi has had before, twenty years ago for the breast cancer and a few years ago for the lymphoma. She's had a pretty tough week so far.  The side effects come on slowly over a couple days.  By Wednesday last week she was in bed, nauseas, unable to eat, mostly asleep all day and night. She has been eating just a little yesterday and this morning.   The tumor pain is also constant and intrusive, as always. She is scheduled to have these infusions every four weeks until such time as her doctor sees tumor growth and decides it's not helping, or until she herself wants to m...