Hey Everyone. It's Jen this time.
First and foremost I would like to thank all of you for your love and support over the last few weeks. This recovery was much more difficult than last year because he removed quite a bit more tissue. I was on meds and a liquid diet longer than I expected to be and lost quite a bit of weight because of it.
I spent the majority of the first week in bed and then when I was feeling a bit better I moved out to the couch where I snuggled with Pippa.
I'm feeling a lot better. All of the stitches have been removed and I am fully off the pain medication. I am eating solid foods again and trying to build up my strength.
Currently we are in limbo in regards to my treatment. The last week or so has been full of various appointments with differing opinions and I'll try to break it down for you as best as I can.
I have three doctors working on my case at this point. Dr. Dent is the ENT that has been with me since day one and has performed both of my surgeries. He has asked me to seek referrals from Dr. Weismann who is an ENT oncologist at UCSD and Dr. Koka who is a radiation oncologist at Scripps Hospital. Dr. Dent ordered a PET scan (which I had last Saturday) so that the three of them would be able to make the best decision possible with all of the current pathology and imagery.
Dr. Dent told us to see Dr. Weismann first as he would most likely be taking the lead on my case at this point. We were unable to see him first, so we took an available appointment with Dr. Koka last Thursday.
We have seen Dr. Koka before (she consulted on my surgery and course of treatment last year). She is warm and soft spoken and I like her a lot. She said that at this point, due to the fact that the tumor returned in under a year, she would recommend a 6-7 week course of radiation and we would start as soon as possible. However, she was hesitant to go into the specifics of it all because the official pathology from surgery had not come back and I had not had my PET scan. She told me that I could expect the first three weeks to be relatively manageable and then things would get difficult from there. She mentioned the possible need to insert a feeding tube because eating would be very painful, to expect dramatic weight loss, and that I should expect quite a bit of damage to my mouth. She said she thinks she would radiate the surgical site itself and the right side of my neck. It would kill my right salivary gland and severely weaken my jaw bone. I have to admit, I started to get a little woozy when she said feeding tube and the rest of the appointment is a bit of a blur. Luckily I had Caleb and my mom in there with me asking questions that I couldn't think to ask.
On Saturday I went in for my PET scan. That's always fun. They inject you via IV with a radioactive material and then put you in a freezing cold room, lay you out on a leather recliner with a thin blanket, and tell you not to move for 40 minutes. Not only can you not be around other people (because you are radioactive), you can't read or listen to music as it stimulates your brain and will impair the results of the scan.
On Monday morning I went in to have the rest of my stitches removed and Dr. Dent told me that the PET scan was clean. From what they can see nothing has spread to any other part of my tongue, lymph nodes, or throat. The surgical site lit up because it is still inflamed and healing but nothing else did. I have never had something show up on a scan. That's how small this thing is. They aren't worried about what they can see at this point, they're worried about what they can't. The clean PET scan didn't seem to sway Dent's recommendation for radiation.
We saw Dr. Weismann on Tuesday. Caleb, Mom, and Dad all drove down with me to the appointment and we waited for over an hour as the good doc was running a bit behind. These waiting rooms are torturous. They're full of crying family members, elderly folks walking around on canes, and plenty of beanies covering chemo hair loss. I definitely need to bring a book and some head phones next time. Once we finally saw Dr. Weismann, he took the same tact of hesitancy that Dr. Koka had in talking over specific details. He hadn't seen the pathology, the slides from surgery, or the PET scan. He had seen the clean results from the scan, but not the imagery of the scan itself. Luckily, we are in a great medical community and both the UCSD and Scripps systems have something called tumor boards.
Dr. Weismann told us in the appointment that he was going to request all of my medical records, the pathology reports, slides of tissue they removed, and all scans that I have had in the past and take it to the UCSD tumor board on Thursday the 13th. There he will consult with other oncologists, radiation specialists, and pathologists and decide what to do. However, in the appointment, he said that he would be very hesitant to radiate me. In his words "you're a 27 year old healthy woman with stage 1 cancer and I'm not sure how responsible it would be to subject you to the long term effects of radiation. If it were stage 4 or if you were 60 years old, we wouldn't be so concerned with the long term because it would be the short term that mattered". In case you don't know, the long term effects of radiation are possibly doing enough damage to the cells to cause another kind of tumor or cancer in 15-20 years.
Sooooooooo. We are waiting to hear what he recommends. We should know next Friday or Saturday and Dr. Dent and Dr. Koka will most likely take their lead from him.
We will update all of you next week. It is also possible that Dr. Koka will take my case to the Scripps tumor board the following week if the three of them feel like more eyes need to be on it.
Dr. Weismann said that he's only seen one case in the last 20 years where a tumor of this kind was found in the same location in someone so young and with no risk factors (such as smoking). He said that when they find this kind of tumor, it's usually progressed to stage 4. Thank goodness we found it so soon and we've got so many eyes on it. He also said the rarity of it would make the decisions going forward that much more difficult because they have so little to compare it to.
If they do recommend radiation next week, we will fill you all in on what that will look like for us. It's going to be rough, that we know.
The Sunday before surgery I asked the family to go out with me to Julian, CA. It's a small town about an hour east of us. We went pumpkin patching, stopped for some apple pie, and went to dinner. It was a really fun afternoon spent with the people I love most and it kept my mind off of the upcoming surgery. I cannot tell you how much all of them have helped me over the last few weeks. I wouldn't be able to get through this without them.
Contax 645. Portra 160.