Just thought I'd post an update on my progress this week, I have been very tired (and hideous-looking) so no visitors... but thanks for the texts and emails checking in. Grandma Iris and I were able to fill in any spare time this week catching up on a bunch of chatting, we sure make up for lost time when we get together! My voice seems to be back to normal and it doesn't hurt, I can talk now. yay :-)
I feel better than I did this time last week, but I still am somewhat behind the eight ball. It seems I developed a staph infection all around/in my incision, the peak of which began Wednesday, when the itching gave way to a sizeable rashy looking thing around my neck and up my throat. My nurse took one look and said we should have my Dr. look at it. We texted a photo (EW!) of it to my Doc and she called me back with a prescription for an antibiotic. Blech! Good call H. :-) Thank you. I got great relief from the sterile dry cold compress my nurse showed me how to make, and spent the rest of the night trying to not rip my throat off.
My neck/throat has been so sore and irritated this week, it is hard to find a comfortable way to put my head on a pillow. The swelling on my left side especially, goes right up my neck to behind my ear, my neck looked like a fridge. I have had to keep it elevated too so all week sleep has been sitting up. The incision itself feels like a tight scarf has been stuck around my neck with pinching little barbs digging into the skin which is puffy from the interior swelling. My drain had a crazy day on Tuesday as well, seemed to overflow for whatever reason but whatever, that was a low-light of the week.
Thursday my lovely friend calmly chauffeured me to Toronto for post-surgery consult, not even a bead of sweat poppin' on her smooth forehead as we drove south out of Grey county on a snow day. Aarrghhhh I almost chickened out, but between Julie and Iris we got me stuffed in the car, sedated with a little chill pill, and cheered up with a Timmies for the road. I just closed my eyes and concentrated on the burning infected thorn necklace wrapped tightly around my throat and poof! we got to Sunnybrook around noon - Yay Julie!
Had a quick but good meeting with my surgeon, he assessed the incision and approved the antibiotic for the infection - oops it just occurred to me that we didn't check with my medical oncologist to see if I can take antibiotics while on the melanoma treatment... too late now. Anyway, he explained a couple of things about the surgery but not much, we don't have the surgery report or the pathology report yet.
He said he removed ALL of the lymph nodes in the left side of my neck so that is why it is so swollen and sore. He checked out my drain and - best part of the day - he removed it! I go back this Tuesday to see the surgeon again to remove the rest of the staples and assess my blood for "ionized calcium serum" levels.
I am still learning to understand what is the importance of ionized calcium serum levels? I think this is not the same sort of calcium that we think of for bones and teeth?
Thyroid, and more importantly parathyroid (there are four little pea-sized parathyroid - two of which I am now missing - tucked in behind the butterfly-shaped thyroid gland in your throat) regulate calcium, and I guess if it goes too low you can die? I had no idea. I was sent home sternly lectured to get to emergency immediately if I felt numbness or tingling in my fingertips, cheeks, lips or tongue. Thankfully, none of that, but I certainly am motivated to take my calcium stuff!!
I thought I came home with a lot of prescriptions after my surgery in May - HA! I have to take a truckload of stuff this time, most are temporary though phew.
- 3x daily I have to take an effervescent orange-flavoured drink containing 1000 mg of calcium each, plus a fancier vitamin D supplement than the one I already take. These are for one month only thankfully, it feels like a full time job managing all of my medication times. Will take a regular calcium supplement for the rest of my life, but not the pricey prescription stuff after this month.
- pain meds as required, which has really backed off, usually just later in the day and bedtime for my left shoulder/neck
- antibiotics 4x daily (and of course... probiotics!)
- thyroid hormone replacement - lots of info to come on this one. I was vaguely familiar with this little pink pill as my Mom has taken them since she had her thyroid removed in her early thirties (I'm not allowed to be specific about my age and her age when talking about stuff like that heehee - she still hasn't forgiven me for telling my grade *blank* class that she was 38 years old at the time! eeek!) ;-)
I have to complain for a second - imagine!? The surgeon strictly explained to me that I HAVE to take this thyroid hormone supplement every morning on an empty stomach. An hour before anything else. Even coffee. For the rest of my life.
NO COFFEE for an HOUR after I wake up EVERY DAY for the REST OF MY LIFE. AN HOUR!?!?!
It's the little things in life that get you... please tell me you understand the importance of my morning coffee - it's all I have left for crying out loud!! I LOVE coffee immensely, I have backed off consumption of it over the years, even went as far as trying to quit a couple of times, but my love affair with coffee is much like that of my affection for the incomparable rays of the lovely sun. Warm, strong, life-giving and never-ending... coffee, just two small cups, the thing that for me makes getting out of bed every morning bearable.
Okay, I'm done exaggerating that for the moment, but I imagine many of you feel the same way. Whatever little part of your morning ritual that makes your life your own, think of delaying that for an hour. Who has time for that?? Right now I can lie in bed for an hour counting the seconds til I can stumble with my eyes closed to the keurig, but someday this cancer sabbatical will end and I will have to get up at THREE AM just to get ready for work in the morning??
Scott helpfully told me that this delay in morning coffee is a small sacrifice to make, it is a decent tradeoff for having cancer in my throat, and I should quit complaining. He's a brave man saying that while he's in Saskatchewan!! LOL
While I am complaining, please let me elaborate a little on the one other thing that is making me a bit crazy these days: the itching. I have a terrible rash which must have stemmed from the staples or the ointment they used or the staph infection? Pair this rash with my history of psoriasis and my current chemotherapy side-effect of itchy skin, and I am spending a lot of time applying hydrocortisone cream.
I found myself thinking this morning that I would give just about anything (including my morning coffee - for a week!) for one half hour in the sunshine. Sun. Right now. Please! The rash is all over my neck but now also on my face and forehead, arms, knees. I hate it.
I know my skin well from dealing with it for so many years, and I can tell you with all certainty that one hit of real natural (or tanning bed) unadulterated UV rays would zap this irritating hot pink dry painful frigging itchy skin!!! It is a vicious circle for me, I have always used sun to cure this type of skin flare-up, but now that I can't do that I fear this rash will now stay for the winter. Nothing helps it like the sun.
Phew thank you, I think I am exhausted of venting.
Guess I better wrap up anyway, geez I am long-winded - lots happens while I slept the week away!
It was wonderful to have Grandma Richardson here, she was an amazing help too - I am humbled by her energy and her calm cool approach to everything. She is one amazing Lady, that Grandma of ours (which I have always known but wow an up close reminder this week). :-) I was able to rest and relax while she anticipated every need the girls or I had. I had a couple of rough patches too, not feeling well and post-surgery side-effect stuff and she calmly put up with my whining, pacing, and bitching, plus she gave me good advice when I needed it. As always. Thank you Iris, for everything this week and always! I love you. And thanks Grandpa for letting us steal Grandma away for the week. xoxo