Darin update part 2
The days following Darin’s diagnosis were incredibly overwhelming and frustrating. We would try calling a doctor and we would get no response. We’d call another and they’d say to leave a message, but then we’d never get a call back. We’d call another doctor and they’d say they didn’t treat Darin’s kind of cancer. We called my uncle Brad to get his insight (he is an ENT at Harvard), and he made a few calls for us. Within a few hours we had everyone calling us back. (Thanks Brad!!) We first met with Dr Smith at the U on August 13th. He was so great! He talked to me on the phone for a long time before our initial appointment and was so patient and kind. He suggested we consider seeking treatment with a doctor in Arizona that has seen more cases similar to Darin’s. He also said, “I’m not sure if you are familiar with the LSD church, but there was a man named Spencer W Kimball that had the same type of cancer. And we want to be like President Kimball in almost every way, but not like this!” Then he said was in favor of doing a second surgery. He told us that President Kimball had surgery when they found his cancer the first time, and if they had done radiation the first time they would have had to remove his whole voice box when it came back later in life. He said, “I don’t know about you, but I think it would have been pretty hard to be the prophet with no voice box!” He was so cute. The actual appointment was a little rough for Darin as they kept putting different cameras down his throat. In the end he made us an appointment to meet with Dr Buchmann.
On Aug 18 we met with Dr Buchmann up at Huntsman. Waiting in the waiting room was really crazy. Darin looked like the picture of health compared to everyone else. Lots of yellow skin, oxygen masks, and tracheas. We really like Dr Buchmann, and he brought in a team of about 7. He was very thorough and helped us understand Darin’s cancer a little more. He brought out a model and showed us a throat. He told us that he had never seen a cancer like Darin’s before. Not only because most throat cancer is caused by smoking, drinking, etc and Darin’s done none, but because of the location. The doctor pointed and said he had seen cancer here, here, here, and here (above below or to the sides), but never here (where Darin’s cancer is. He said that he has heard of a cancer like Darin’s when he was in medical school, but has never seen it. He even said that every year to keep his licensing he has to fill out paperwork for how he treats different cancers and when Darin’s type of cancer appears he always has to mark “N/A- never seen this.” He said he’d finally be able to write something down on that section. He told us that he wanted us to get some CT scans done, and we told him that we had already scheduled it, but the earliest we could be seen was over a week away. He said he thought he could pull some strings for us and sent a nurse out to start working on getting us an earlier spot. A few minutes later she came back in and said we had a new appointment for that same day at 3!!
After talking to Dr Buchmann the doctors we had met with at this point we split 50/50 between option one and two. Here are the options…
Option 1- Do another surgery. This is a good option because if his cancer returns down the road he has a back up of doing radiation or chemo toe take care of the cancer. The downside is Darin will only have 50% of his vocal cords and he will have a bad sounding voice the rest of his life.
Option 2- He goes to Huntsman every single day for 6 weeks to receive radiation. This is a good option because he would be able to retain a good speaking voice, and it has a 90% chance that the cancer won’t return. The down side is that if it does return, Darin would loose 100% of his voicebox and never speak again.
Option 3-if the CTs show the cancer has spread, Darin will begin a combination plus chemotherapy, but we haven’t gone into any details on that yet because we are really hopeful it hasn’t spread.
Option 4- We go to Arizona where they’ve seen closer cases to Darin’s and do a combo surgery/radiation treatment.
Half are in favor of radiation and half in favor of a second surgery. Dr Buchmann said he would review the images and take Darin’s case to the Huntsman Tumor Board (a group of 30+ doctors, surgeons, radiologists, etc) and he said Darin’s case would get pretty “heated” with lots of arguing over the best course of action.
On August 22nd Dr Buchmann called to say after reviewing with the board, Darin’s case would have far too many risks to do the surgery. They would need to remove one full vocal cord plus there would be several complications with a flap in the back. The board agreed that radiation was the best option. He then set us an appointment with Dr Lloyd the radiologist.
August 29th we met with Dr Lloyd. He was fantastic! (We also love his nurse that is Jon Schmidt, the piano guy’s sister). He reviewed Darin’s images with us and was really patient in talking us through the options and why he felt radiology was best. He explained the process…(look up head and neck cancer radiation masks eeeek!) and talked to us about all the risks involved. He told us that he will meet with Darin on September 4th to have a “mapping session” including making the creepy mask. I also have an appointment that day to take a class on how to be a good caregiver. They told us that Once the mapping session is done, Darin will start treatments in 2-3 weeks. Originally we thought Darin was going to need treatments every day for 6 weeks (42 treatments), but now they are planning on only Monday-Friday for 5.5 weeks (28 treatments). So that was happy!
He told us that Darin should feel normal the first two weeks of treatments, but after that it will start taking a toll. He said there would be lots of fatigue, some hair loss (mostly just on his neck), and pain. He said he should be fine to work for the first while but then things will start getting rough enough he will need to either be part time or take some time off. Once treatments are complete, it should only take 3 weeks for recovery!
There is the update! What a crazy month it has been!!
