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...