A lot has happened in the twelve weeks since my last scans. On the medical side:
- In light of the finding that I had extensive pulmonary embolisms in my right lung, I immediately started taking Xarelto, front-loading with 30 mg per day for the first thirty days before dropping back to 20 mg/day. My oncologist, Dr. Maughan, has told me that since this is my second experience with PE, I'll probably taking blood thinners for the rest of my life.
- A sonogram of my heart showed no clots or damage due to the PE.
- A ultrasound of my legs failed to find additional deep vein thrombosis clots in my legs.
- An MRI of my brain showed no clots or stroke damage.
- An otolaryngologist and speech disorder specialist did an extensive examination of my frozen vocal cord, and concluded that my left vocal cord nerve likely had been adversely affected by the scar tissue surrounding the supraclavicular node tumor that was was nuked in radiation therapy back in June 2019. The doctor said that she might be able to release the never with a series of botox-like injections, but wanted to wait for at least six months until my PE's were cleared and I could pause my Xarelto to reduce the risk of bleeding. So I'm still speaking with half of my vocal cords.
- In October I caught a cold and learned that coughing with a vocal cord stuck open sucks. It is really difficult to generate any pressure in the bronchial tubes to clear phlegm.
- In the past six weeks I've noticed blood in my urine on several occasions. Lab tests have confirmed the ongoing presence of blood in my urine, but no one has yet figured out the cause. It may be because I've been helping my son renovate his new house and wasn't hydrating enough, compounded by my taking blood thinner medication. It doesn't seem to be from my kidneys, and obviously not from my bladder (since I don't have one). Follow-ups are scheduled for next month.
- Today's scans showed no metastatic activity, and also saw no more pulmonary embolisms. Merry Christmas!
I was particularly active in my role as a bladder cancer patient advocate:
- In September I participated in an educational seminar sponsored by Johns Hopkins Greenberg Bladder Cancer Center, speaking with Noah Hahn about patient participation in clinical trials.
- In November I was a panelist in an FDA Oncology Center of Excellence Public Workshop regarding Clinical Trial Design for Non-Muscle Invasive Bladder Cancer
- I participated in three meetings in my role as patient advocate on NIH's National Cancer Institute's Bladder Cancer Task Force, where we focused on defining the priorities for NCI-sponsored clinical trials in bladder cancer, which will drive tens of millions of dollars of funding for the next five years.
- I participated in three additional meetings of NIH's Patient Advocate Steering Committee, focusing on training new patient advocates on more than 40 NIH committees and task forces.
In my personal life:
- In early September I joined with some old friends and attended the Utah Shakespeare Festival in Cedar City and saw four plays in four days (Richard III, Comedy of Errors, Pericles, and Cymbeline).
- The following week my brother and I attended two concerts: one featuring Styx and REO Speedwagon at the Utah State Fairgrounds, and the second in Denver to see the Eagles on their Hotel California tour.
- I helped Spencer add a bathroom to the basement of his new house, reminding me why I didn't become a carpenter, plumber, electrician, or painter.
- In October Chelsea gave birth to her sixth child after 20 minutes of hard labor. Mom and baby Benjamin are well. Her oldest daughter contracted Coronavirus from a school classmate a few days before Chelsea gave birth and it spread to the rest of the family (except Chelsea and the baby), but fortunately everyone fully recovered.
- In November my brother and I picked up a bone-stock 2021 Jeep Wrangler in Boise that had been ordered for my Kirsten back in August. She'd sold her old Wrangler and her nephew agreed to buy her Subaru. I mounted my Gladiator OEM wheels, added a few other things, then I delivered it to her in Denver and brought back the Subaru. Merry Christmas!
On November 21, my stepfather, Ralph Telford, died after suffering internal bleeding and a stroke. He was 87. He married my mom in 1994, soon before they both retired from teaching. They served multiple missions for the Church of Jesus Christ of Latter-day Saints, moved to Florida, and enjoyed their golden years together. I flew to Florida the same day and returned with my mom a couple of days later. Thanksgiving was nonetheless a time to give thanks and recall the joys that Ralph brought into our lives, plus we celebrated Benjamin's birth. Ralph's funeral was on December 1, and tomorrow I'm accompanying my mom as she flies back to Florida.
Jennifer meanwhile continues to patiently endure the ongoing effects of frontotemporal dementia. Her movements are slower, and her fine motor skills continue to decline. She has difficulty carrying a conversation, but always greets me with a big smile as I walk into the memory care center. I find myself applying one of her core teachings: just do the next right thing. And hopefully I'll continue to have lots of opportunities to do so.
ps: Snowbasin opens on Saturday!
