The Next Mountain to Climb

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...

Good afternoon. We want to give you a brief update. There was some confusion with people yesterday because a few were under the impression that I was starting chemo on Friday. Unfortunately, the insurance approval did not go through until Thursday evening, thus changing the schedule. So if you got the message that I had chemo on Friday, I’m sorry I did not send an update out early enough and you got caught in the confusion.  I will be starting my new chemotherapy regimen tomorrow. Thankfully, Stanford is again able to work with my local oncologist in order for me to have the infusions in Fresno instead of making the drive up to Stanford. Jim and I both appreciate that!  As long as all goes well with this treatment, the next one will be in four weeks and we will continue that schedule until such time as we change treatment again or my blood work gives us a reason to wait on a treatment.  We know the possible side effects of the new chemotherapy. If they even make an appear...

Jim and I have recently returned from a wonderful road trip. We visited 21 states, some of which neither of us had ever seen before.  The very first day of the trip I had several appointments at Stanford. One of those was to have my PET scans done. We received the results and I met with my LMS specialist to discuss them earlier today.  There were a couple of results that we enjoyed reading. Namely, most of the tumors in my lungs remain stable. It’s always good news when lung tumors aren’t growing.  Unfortunately, the good news ended there. The scans found that I have many new subcutaneous tumors in a variety of locations across my body. I’ve had several on my scalp for the past year or two. There are quite a few more there. They’ve also begun growing in several muscles. Perhaps the most disappointing are the numerous new metastases growing in my bones, notably in my vertebrae and hip bones. Those appear to be growing aggressively with many new tumors needing our attention...

While we don’t have a lot to say, it’s going to be at least a few weeks yet before Kristi’s next full body scan, so I thought I’d send a little update.  Last Tuesday Kristi had an MRI focused only on the tumor(s) on her vertebrae. This was in preparation for a Cyberknife (directed radiation therapy) she had on Friday.  The MRI showed significant growth of the tumor(s) on her spine. This makes us anxious for the full body scan that is not yet scheduled.  The Cyberknife procedure was not too difficult, and the side effects seem less that we were expecting. Although, she says it feels like someone hit her on the back with a bat and she is a little more fatigued than usual.  The goal for this procedure is pain reduction. The general consensus now is that her regular “back pain” must be from these tumors. If this procedure doesn’t have any pain relieving effects, she will be having a different treatment from a Stanford pain specialist in the near future.  We just hav...

Well, the journey continues. I recently had a full body MRI and Jim and I were able to discuss the results with my sarcoma specialist a couple of days ago. The good news is that, while there has been some slight growth across all the tumors, most of those in my lungs have only grown slightly. The doc actually termed those tumors “fairly stable.” So, great news because lung mets are inherently dangerous, especially if they’re quickly growing.  Less fortunately, we learned that the tumors on my lower vertebrae are growing faster than desired. In an effort to slow or even shrink them, the doc is ordering radiation therapy. I have a consultation with the neurosurgeon and interventional radiology next week, after which the treatment will be scheduled. We are hopeful that it will only be one or two rounds, but that will be determined after more scans, of course.  In addition to the radiation, I will continue taking my daily chemotherapy tablets at home. At this point, the doc is alr...

This post is just to say that there is little to report.  We are waiting for a scan next month and continuing to manage pain. Recently, weight loss has become an issue, too much that is.  Spring is here in Central CA and this weekend is Rail Fest at Hillcrest. It’s very cool to have this small scale railroad right here in Reedley. We took Sage and Jamie to try out their newly expanded routes. 

In Macbeth, Shakespeare wrote, "Give sorrow words. The grief that does not speak whispers the o'er-fraught heart and bids it break." This is why we blog. Yes, it's a great way to share information with everyone who cares to know. But it is the processing of our grief that it manifests its greatest power. There is not much to report right now. I am back on the chemo pill called Votrient. It's main side effects (for me anyway) are fatigue and it causes hair to turn white. A bed and hair dye are easy remedies. I'm taking a walk almost daily; usually a couple miles at a time. It's not my mileage of the past, but I'm happy for every step. Between my naps I'm feeling pretty good, enough to be productive around the house little bit, important for my sanity. The elusive pain is omnipresent, but drugs and movement help a little.