Dear, Callie.

I am so sorry for what you and Don have been going through. It must have been terrifying to see him like that. I have to commend you for being calm and level-headed during these emergent situations. For such a young woman, you are far more mature than your years. Don is lucky to have you by his side.

I sincerely hope that there is no tumour invasion into the vagus nerve. Hopefully, it's just the swelling causing these episodes and nothing that can't be taken care of conservatively and certainly nothing that would prevent him having surgery later in the week. I am also surprised they didn't give him steroids in order to bring down the edema. I'm sure they have a good reason, as we are not doctors.

It may be worthwhile asking (sooner rather than later) if there is a physical therapist on staff that is qualified to treat lymphoedema. Perhaps that might help the swelling enough to make a difference in the way he feels. I'm not sure if there are contraindications for this, but it would be easy for the doctor to call the rehabilitation services department in the hospital to ask for someone who specializes in lymphoedema.

I hope you are hanging in there. Is Don's family still down with you to help out? I hope so. Please keep us posted as you are able.

With great care,
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!