Hello dear friends,
I apologize for being offline for so long. I finished my treatment on Halloween, but since then, I have had about 4-5 hospitalizations, the most serious one being for neutropenia. Also, for g-tube falling out, and being malpositioned. Pain management, etc. Every time I ended up in the hospital, I felt as though there was another setback and I became more depressed and anxious. I felt like this was the time that I should be getting better, not worse.

So, finally, after multiple problems with PEGs (4 of them), they decided to pull the last one last week because my swallowing is good...the best news that has come so far.

I have my first post-treatment scan coming up on 1/18 and I am terrified, as many people are! I just hope it's gone. I have been waking up with panic attacks at night. I am already on antidepressants and anxiety meds during the day and there are times when I have to wake up to take something at night for breakthrough. I've tried meditation app on my phone that is really good and helps temporarily, and sometimes I do it multiple times in a row, trying to desperately glean something from it. I've even dipped my toe back into prayer, where I consider myself agnostic. I feel like I can't go on like this. When will it stop.

I know no one deserves this cancer at all. Many of us have had no risk factors and still mysteriously gotten the disease, yet I have gotten it twice, two different types, without risk factors. I don't fit into any demographic, so the doctors can't tell me my chances of survival. I ask what my prognosis is and I get the "answer/non-answer" that we've hit you with every treatment we've got. I know the doctors aren't gods and cannot predict the future. All I do know is that I have the best team I can ask for.

I realize this has turned into a huge vent...hysterical in some points...which is partly why I haven't been online. I'm looking for answers that can't be answered.

BTW, my scan is an MRI with contrast. The team feels as though that will give them the best picture of what is happening.

Thanks for listening and always being there for me.

xoxo,
Kerri

37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!