We are celebrating the two-year anniversary since my daughter’s last cancer. She is following a more frequent version of the Toronto Protocol (the go-to surveillance program for Li-Fraumeni Syndrome). We ride the rollercoaster every three months – so far so good. She survived her recent 10-day vision quest in the mountains with the requisite three-day fast and the close-call bear encounter with the revelation that she will grow old. I cried.
We are celebrating one year since my son’s T-bone motorcycle accident that landed him in the trauma unit of Stanford with a crushed right side. He has recovered completely except for scars and some remaining hardware in his clavicle. He still owns one motorcycle. He has since purchased and has been learning how to race sports cars.
For anticipatory grief, traumatic triggers and perpetual anxiety reasons, I started taking dance lessons and have been at it for 1-¼ years. With dance, I have found ‘joy’, great joy. I have stopped worrying all the time. I have gotten into awesome physical shape while building up my stamina. I have gone ‘all in’, as I do with most things. I have been OD’ing on the Kool-aide, dancing three to four days a week. I love collaborating and especially love choreography. It’s MUSIC! I love picking out the songs and have become proficient at cutting a track in Garage Band. I love coming up with the story I want to tell with the dance, working on the choreography with my teacher, practicing, refining, performing. Let’s not even get started on the costuming. It’s one word – EPIC. I source the materials; I sew; I create. This is all Linda’s Joy Road.
Even though I post often on Facebook about dance, other things have been going on.
In June my favorite dance teacher relocated, throwing me into paroxysms of grief. I have continued for the last few months with other teachers but things are not the same, they’re good, but flattened. I went to another dance competition a few weeks ago. The experience, results and memories were not the same as the first time when I wrote about when the rainbow is magic. I did enjoy performing a solo with one of my teachers at a dinner show where for the first time I wasn’t nervous. But I left tired, deflated and have since been trying to figure out what happened. I am about to do a reset to search for conditions that will move me back into the elusive state of joy, back to the magic and over the rainbow. I’m confident I will get there.
For some reason, over the course of the last year, two of my front teeth have experienced root resorption. This is an unusual phenomenon for one adult tooth, but of course I have two and possibly three teeth involved. In dental resorption the body’s own cells eat away at the tooth and dissolve the tooth structure. Imagine flossing and having the floss go under the gum and around the top of the tooth to the other side! Yesterday, finally, after over a year of waiting for bone growth, my implant tooth was installed and I don’t have to wear a plate and lisp when I talk anymore. With surgery, the next tooth root was repaired with a biological filling and has a 50% of survival. The third tooth is stable right now but is dead. No one knows why this has happened. No pathology was taken. No dots were connected.
I’ve wondered if this could be related to my last parathyroid tumor that was removed in December. This was the third parathyroid tumor that sucked me into osteoporosis and maybe it effected the teeth. No one knows; no one seems to care.
The GI Tract:
I’m no longer on a professional career track, nor the mommy track. I am neither on a racetrack nor trekking in the mountains seeking visions. I am on the Li-Fraumeni track and possibly a dance track. Now though it seems issues have resurfaced with my GI tract (tract not track, ha-ha). Over the course of the past 15 years, since the Whipple surgery for pancreatic cancer, I have been steadily losing weight despite eating heartily healthy food. The scale has been hovering at 100 to 103 pounds. When size 2 clothes became size 0, I thought I better look into this before I disappeared completely. The final trigger was incessant stomach pain. I visited my GI doctor.
After an endoscopy in May, I was diagnosed with a duodenal ulcer. Using all of my recently acquired ‘Sicilian’ grandmother tricks, I blamed the motorcycle. When a test for H. Pylori, the most common cause of this type of ulcer came back negative, I was put on a proton pump inhibitor to reduce stomach acid. This might be enough for most people, but because I am ‘A Kick-Ass Fairy’, this was not enough for me. (More on this later.)
I visited a dietician and am being tested for malabsorption, which I have learned from my research can become part of the aftermath of having the Whipple surgery. I always wondered how, when so many apparently necessary body parts are removed we can continue to function. Even though I have become more toned from dancing, am eating more, I haven’t added any muscle mass and the clothes still hang off me. I am awaiting the results of testing and it may be a simple fix – taking digestive enzymes – I hope. It makes sense since I am missing 40-50% of my pancreas. We shall see.
The Ulcer and the Geneticist:
I visited with the now retired and generous volunteer Geneticist, Dr. Robert Nussbaum and Deena, a genetic counselor at UCSF this week. With the presentation of the third rare and improbable parathyroid tumor, the duodenal ulcer, and the earlier pancreas tumor, I am a candidate for another hereditary cancer syndrome test: Multiple Endocrine Neoplasia 1 or MEN1. After updating them on new tumors and updating the pedigree chart for deaths over the 6 years since my last visit, the forms were signed, the blood was taken, hands were shook, I hopped in a UBER and BARTed home.
How do I feel about this?
How likely is it that I would have two extremely rare hereditary cancer syndromes?
How likely is it to have lived to 59? How likely is it to have a daughter that is surviving two aggressive sarcomas? How likely is it to live an exceptionally good life, living the dream in between? How likely is it to dance with the bones of a 90 year old? How likely to live 15 years with half a pancreas? How likely is it to dance the Lindy Hop, the Quickstep, Mambo, Samba, Salsa, the Viennese waltz while missing half of one lung and your body is eating your teeth?
How likely indeed…
I learned from the dentist that a proton pump inhibitor doesn’t allow calcium to be absorbed by the teeth. An increase in tooth decay is seen and I should consider a H2 blocker instead. Time to call the GI doctor!
While I might not be able to connect all of the dots, this Kick-Ass cares about Me.
The only person that cares enough to connect your dots is you!