Taryn in a rare fight

Hello, my name is Beth. I am raising money for my friend Taryn. See below for her latest update:

Update:

I met with the Mayo Monday and they agreed to proton beam therapy, they want to start August 7th so I’ll be in the cities for 6-7 weeks starting then. With proton beam therapy, though, I significantly lessens the amount of radiation to areas that don’t need it which is great. I have to go back to the Mayo Monday and Tuesday for treatment planning- I have six appointments Monday and one Tuesday. Monday is so busy because I have to have a lot of imaging it sounds like to map out the areas they need to beam, I have to be fitted for the mask, see a dentist, get labs, and see the medical oncologist- they mentioned the adjuvant chemo at the Mayo, too, like the U did. They said I had a good prognosis, though. That they are going to take care of me and I have a long life ahead of me. There was short term and long term side effects though that were kind of unnerving. Like short term- mouth sores which I am scared for.. painful, extreme fatigue, decreased appetite, taste and smell alterations, redness on the skin where the beams enter. Long term it sounded like I could have visions changes and may need cataract surgery in the next couple years, potential decreased peripheral vision, maybe some decreased color vision. They also talked about jaw weakening and wanting to remove any teeth before surgery that may need to be removed in the future because more trauma could cause issues and radiation can weaken teeth and causes cavities. They also said I would meet with an endocrinologist because of the potential for radiation to touch near the pituitary gland, but they said it would be hormone replacement therapy for thyroid and such. Then they said I’ll have to do nasal rinses everyday for a long time potentially forever but they noted that some people were able to decrease and wean down after about two years. Once radiation is done I get to get the tube in my ear though so I will be able to hear a lot better and the fluid will be able to drain. After treatment is done, ill be seeing oncology and ENT frequently for surveillance purposes, as the years go by, it’ll lessen, but it sounds like ill be watched closely for a very long time as this type of tumor likes to creep back- luckily, they said the recurrence rate lessens as the years go by. As for surgical healing, I have improved a lot. The pain is better, sometimes there is still a little bit, but way more manageable. I still have numbness but they said that was to be expected for quite awhile as the nerves are healing and the inflammation goes down. I got a pretty icky infection in there during post op so that caused a lot of pain and delayed healing, but it is a lot better now. I still have a long road ahead of me, but the Mayo was able to give me peace of mind.

7/5/23

I met with the radiation oncologist and the medical oncologist today. Discussed next steps. For sure need to do radiation and they recommended 6-7 rounds of chemo in conjunction to help amplify the treatment. The tumor board met Friday and they also recommended I see the Mayo to inquire about options for proton beam therapy instead of radiation as it could be more specific and target the areas better. Next step is to meet with the mayo and do more testing and images and discuss proton beam therapy. If proton beam therapy is deemed my best option, I will need to have my treatments done in Rochester as they’re the only place in Minnesota that provides this type of therapy. So it sounds like I’ll be living in the cities for some time for treatments.. but whatever it takes to get better. We discussed surgery and pathology some more and it sounds like there was disease in more areas than the nasal cavity, turbinate, and Eustachian tube. There was a couple other areas where they found disease. Luckily, they surgically removed everything you could see, now we just need to combat microscopic disease. As for surgical healing, I’m still experiencing quite a lot of pain, I’m weak and tired most of the time and I don’t sleep the greatest due to pain. My nose drips and drains a lot and it’s still pretty swollen. I did have an episode of bleeding the other day from overdoing it, but it’s been ok since. My scalp is still very sore from the lumps from the immobilizer. Treatments will begin soon as they like to get it started within 6 weeks post op, and we’re on week 3. Day by day.

6/25/23

As some of you may know, a lot of you do not.. I had surgery on May 24th to remove a mass from my nasal cavity that they thought was just a benign papilloma. May 25th I was diagnosed with an Adenoid Cystic Carcinoma. A rare form of head and neck cancer that typically arises in the salivary glands. I was immediately referred to the U and scheduled for surgery again. Since then, I’ve underdone many.. many.. tests and images to further evaluate my condition. The MRIs, PET scan and CTs all showed no evidence of disease anywhere in my body except for the left side of my face..

I had surgery on June 16th- where they removed the rest of what was in my nasal cavity, removed my left Eustachian tube, removed my left nasal turbinate and did some clean up around the musculature near the Eustachian tube. After my 8 hour surgery, I was notified that they were able to remove every bit they could see to the naked eye, but it was possible there was still microscopic disease left. Therefore, I have been referred to the U oncology department- I will be seeing them on July 5th to determine my treatment plan. For sure need radiation.. possible chemo. I will also have another procedure for sure, to place a tube in my ear to replace the function of the Eustachian tube.

I had to stay a night in the hospital where I was observed every 15 minutes to check neuro status. I am home now and I am recovering from surgery still, it has been a grueling process in itself. I have alot of numbness and pain in my face, along with significant swelling, intense nerve pain.. my teeth on the top hurt like crazy and it’s hard to eat, my upper lip is numb, I have a hard time opening my jaw because it is so sore, I can no longer cry from my left eye, my hearing is muffled because the Eustachian tubes serves to help keep fluid out of the ear, and I’m still experiencing alot of pain in my head. I also have about six shaved areas on my head that served as landmarks for surgery. It’s going to be a long recovery, but I have Faith that I can endure. Rare is never impossible.

I don’t post this for sympathy, but to ask for thoughts and prayers as I approach the biggest battle of my life.