The Road Goes Ever

Goes. Doesn't look like a real word there.

Busy day, after two false starts. I post-poned the first physical therapy session so I wouldn't have to struggle to make it to a Lord of the Rings trivia thing later at Bookman's with a friend from The Plaza, Ista/Andrea. I was late and blew it utterly anyway. I knew all the answers for the ones I was there for, dammit. Even Caras Galladhon! She won anyway, and they gave everyone 2 tickets regardless, so she gave me her second, which was very sweet, considering.

The second appointment was a mix-up. They'd called me to re-schedule, because my therapist called in sick. I wrote down Tuesday, but apparently it was to be Wednesday. So, Wednesday it is and back I went.

My therapist, Janice, is an older woman, which is probably a good thing as I won't be distracted by a hot young chick groping me. She was very nice. Patient and slow and made me feel like she knew what my issues were, like she'd had experience with this particular surgery's issues.

Let's enumerate those while we're here. In order to fill in the void left in my neck when they removed 27 lymph nodes and I'm sure plenty of adjacent tissue, as least near the two nodes that were cancerous, my surgeon took a good section of pectoral muscle and detached it from my sternum on the one side and shuffled it under my skin, blood supply and nerves intact, pivoting it up into my neck area and reattaching the loose end to my jaw. I have a chest muscle in my neck, and it's always tight, like it's in a constant state of flex. The added feature is that, since it's still attached to my shoulder, when I move my arm or try to do anything that used to involve a chest muscle, my neck flexes and it has a tendency to pull down on my jaw.

The whole thing feels like an experiment that hasn't been proven effective yet and they're still working on it, but the procedure has a name and everything. Radical Neck Dissection with Cervicopectoral Flap Reconstruction. The neck dissection has been around since at lest 1906. Not sure how long they've been doing the reconstruction part.

So, I have a big chest muscle swung around and in my neck, laying on top of my collarbone and attached to my jaw. Flexing pulls my jaw down, but the whole thing is also tightening up a bit and pulling my chin down all the time, making my posture worse than it already was. This combined with the lack of real neck muscles and the tendons all around the area are overcompensating for the lack and everything is tighter than Dick's hatband. My neck feels like it's got a foot of steel cable running down it.

These issues and the other throat problems I have still from the radiation and chemo: muscles that hadn't been used for over a month, atrophied and burned with radiation. Means I have to learn how to swallow for the third time. At least everything I drink doesn't come out my nose like the first time.

Anyway, Janice ask me a lot of questions, listened well to my answers and offered some good suggestions. She checked my range of motion, mostly regarding my neck, but a little around the shoulder. I mentioned a problem with my tracheotomy scar, which seems to have gotten tighter. She massaged it, gently at first, then rather vigorously, but it does seem a lot better. She then began to press upon my tendons and certain muscles to both get an idea of what's going on, and to stretch them and get some more range of motion out of them.

Pretty standard physical therapy I suppose. While lying on the table, another patient came in, and though I couldn't see, he had apparently had his foot torn or cut off and reattached. Good times. Janice arranged my appt schedule. I'm approved for 15 sessions and they set me up for 10 already. About twice a week.

And then I was on the road, heading north to meet up with Andrea and her friend, Dave. We went to Armadillo Grill in Scottsdale. Appetizers were half price. There wasn't much I could choose from with my no-saliva issues, so I got fried pickles. I was expecting pickle chips, not kosher spears. They were good, but difficult to eat since I can't open my jaw very wide anymore (Janice is going to work on that too). That and the acid in the pickles messed with my tongue and cheek. Nerve damage from surgery and all. Figured I needed some more food in me for the long evening so I got the bread pudding for dessert. Not bad. Mine's better. Still pretty hard to eat.



The concert was at Jobing.com Arena (I hate typing that - Jobing is a horrible construction of a non-word and naming an arena after it, with the dot com part, is ridiculous). Starting at 7:30, the orchestra and choirs came out right on time. I had been wondering what the concert's format would be like. The Fellowship of the Ring played on a giant screen behind the orchestra, complete with subtitles (since the symphony was louder than the film in places), while the orchestra played the score exactly as it is played out on-screen, right down to the voice-work. There was a female performer singing the lead parts as well as the song "May It Be" for the end credits, and a young boy from the boy's choir singing during the credits as well.  Pretty cool evening.

by the way

I solved the "nothing rhymes with 'orange'" thing.

Door hinge.

So there's that.

I don't have any news. Just here waiting. I did find these pictures buried in my email. I added some for a mini timeline.

This one is from the first day after surgery. May 13, I guess, but it could be the 12th.

The only sleep I got

Leavin the Pit of Despair

Radiation Graduation

 

Need more chin whiskers

"I am in fact, a hobbit in all but size"

Dramatic improvement in the last couple of days. I have been craving pancakes for some reason. I don't even really like pancakes all that much, but the thought of them has been growing in my brain for days. I finally decided that I'd deal with it, so I tasted the syrup we have in the fridge and I could taste it! No more reason not to head out and get some.



As it was 9pm and dinnertime, we all piled in Kev's truck for Mr. Toad's Wild Ride to the nearest Denny's.  I ordered the Build Your Own Slam - 2 pancakes, 2 eggs, hashbrowns and sausages and a glass of strawberry lemonade. I should have ordered the eggs over medium, because over easy was too runny. I couldn't really taste it anyway. Shoulda got them scrambled so I could dowse em in ketchup as I did the hashbrowns. Those were good. The sausages were not. Old and chewy.

The pancakes, for which I'd craved, were light and fluffy, but the syrup was obviously imitation maple because, unlike the real maple syrup I tried at home, I couldn't taste a thing. This and the cakey quality of the pancakes made eating them a futile effort. Irony, that.

Regardless of the small disappointments, the overall mission was a success. My first real meal in 2 months and I could taste most of it, though, admittedly it was the ketchup that saved the meal. I ate everything except the sausages and half the pancakes. A little return to reality afterwards. I was fairly worn out by the time we got home, but still happy to be making improvements.

I have an appointment with Dr. Woo on Wednesday. I think he might take out my feeding tube. I have a long list of questions for him. I'd read a bit about lymphadema. Basically, since Dr. Rothman removed 27 lymph nodes from my neck, the lymphatic fluid that they usually carry away can build up and cause problems. Most of the stuff I've read pertains to breast cancer patients and I need to find out how it affects head and neck cancer patients. Breast cancer patients tend to have 2 or 3 nodes removed. Common problems are swelling in the arm on the side operated on, which is painful and is treated with tightly wrapped bandages that must be worn for weeks. From what I've read, it's not pleasant at all. I doubt this treatment can be adapted to my issues. Can't wrap my neck in tight bandages.

One of the therapies used to treat lymphadema is gentle, specific massage. The fingertips are lightly pressed to the area and moved very slightly down and towards the torso. The other thing I'd read concerned flying after node-related surgery. I'd only seen a couple of things related to this and need to ask if it's true.

I also have to ask when the PET scan will be and how long till the results are back. My dad wants to fly out for it if the time between the scan and the results isn't too long. The last thing I need to ask concerns my lack of saliva. The radiation and chemo pretty much killed those glands. They'll come back, but haven't so far. There's a product that's called Biotene, I think, a spray that acts like synthetic saliva. Part of the problem I have eating certain foods is this lack of saliva. Too dry and I can't swallow. Meats are the biggest issues in this regard.

Anyway, time for my second breakfast!

It Hurts and Stings

I was able to eat some spaghetti last night. Sorta. I ate some sauce and some noodles. A mushroom or two. The tomato sauce burned a little, but it was the Diet Coke that really did it. Harsh. It made my tongue do odd things. Everything tastes metallic or alkaline on one part of my tongue. Even water. I think that's why I was able to eat spaghetti. The acidy taste mimicked the real taste of tomato sauce's acid taste and fooled my brain into thinking it was tasting something. So I could finish eating rather than losing my appetite after a few bites of no flavor.

Slowly But Surely

I think I'm finally turning a corner. The burns in my mouth are starting to heal finally and I don't feel as tired as I had been. The burns on my neck are much better. I haven't really been out since my parents left, except to go to my doctor's appointment. Had no energy to do much and driving is tough because of the muscle issues in my neck and shoulder.

I tried to eat a few times. Tonight I tried a scrambled egg. I got most of it down before the lack of flavor made it nasty. It's amazing how hard it is to eat when nothing has flavor. If they could make a pill to do this temporarily, they could market it as the ultimate diet pill. I still crave something real, like a hamburger or something. Kevin bought chocolate popsicles but they taste like unflavored ice. Maybe chocolate will be the first taste to come back, it was the last to leave.

Can't Stand Up For Falling Down

Saw Dr. Szewczyk today. She said my blood work looked great. Looked in my mouth and complimented me on how clean it was compared to many of her patients. Brushing is rough but there's no way I'm going to let my teeth go bad too. She didn't really have anything more to offer for the mouth issues except try Claritin instead of Zyrtec. Gave me an antibiotic prescription for a possible sinus infection.

The bad news is that Dr. Woo was a little optimistic. I guess he's just thinking radiation, but whatever. According to Dr. Scewczyk I have about another month before I start to really recover. Right about the time I'm due for my PET scan in the beginning of October. So...no real sleep for another month...

Blood Work #4,983,222

Back to Sonora Quest Labs for blood work in advance of my appointment with Dr. Scewzyck on Monday. Not the last by any measure, I'm sure.

Still not feeling any better since the last treatment. Wednesday will be 2 weeks. Hopefully the doc was right and I'll see some improvement soon. Very tired.

Well, We're Waiting

Well, it's been 6 days since my last radiation treatment, and it's safe to say this is the worst I've felt through the whole process. It's a little odd to think that the radiation is still doing it's little neutron dance in my face this long after finishing treatment, but they seem to be slam dancing pretty hard in there. My mouth is so sore and burned up inside that I can't really talk. The doctor had given me morphine and magic mouthwash, which has lidocaine, and I hadn't used either much through the whole process until now. The morphine is all gone and the mouthwash is nearly empty. I'm not sleeping more than a half hour at a time before the mucus builds up enough that it wakes me, choking. The fatigue is mostly gone, but has been replaced by plain old lack of sleep.

One thing I've noticed over the last few days, no matter how loudly or clearly I speak, every single person asks "what?" after every word or sentence, making me repeat myself and further tearing my tongue and cheeks apart. This happened before all this radiation crap, but obviously it's a bit more troublesome now. The really frustrating part is that if I don't repeat myself and just sit and wait five seconds, nearly every person finally answers the question or acknowledges what I had said, confirming that "what?" is just a knee-jerk response to everything. It was frustrating before, now it's infuriating and painful.

Kaia left yesterday. Back to Florida and school. Miss her already.

One More Day

Well, according to the Ironwood peeps, I only have one more session! I was originally scheduled for 36 treatments, but somewhere along the line that got changed to 35, so today was my second to last treatment. Bad news is I can't celebrate properly! Normally such good news requires a trip to a nice restaurant for some great food, but that's not in the cards. No big deal. Soon enough I'll be able to chow down proper-like.

The last couple of days have been rough. Very tired, very sore. I actually had to crack out the morphine a couple of times yesterday. At least the nausea/heartburn went away, for the most part. Once I'm done with my treatments though, it's going to be about two weeks and then I should be working back to normal. Well, the "new normal" as they say. Nothing is really going to be the same as it was, but that's ok. I'm hoping that my brilliant healing powers will even bring back my sense of taste sooner than expected.

Something came up the other day and I thought I'd address it here. My daughter asked me if I felt any different, felt any of the effects right after the radiation session. The answer is no. You don't feel the radiation at all. It's like getting an x-ray. You also don't really feel any of the effects later. They just sort of creep up on you and are just 'there'. Which is why it's difficult to discern which treatment is causing the side effects. I have to rely on what I've read and what the doctors tell me to determine which is causing what issue, the chemo or the radiation, and often I'm surprised to find out it wasn't the way I thought it was. The taste bud issues, I thought, were the result of the radiation passing through my tongue and killing my taste buds, but apparently it's the chemo killing them off. Which also makes it strange that I still have a great sense of smell. I would have though that since the two were kind of linked in the way the brain works, that the two would be somewhat equally affected by the chemo. Apparently not.

Welp, this time tomorrow there's going to be a party in my pants!

No Mo CheMo

Yesterday was a good day. Today, not so much.

Yesterday was my last chemotherapy session. I got me a certificate an everthang. Got my picture with some of the girls. I felt pretty good most of the day. The chemo even seemed to have calmed my mucus up a bit. But man, I was tired. The fatigue hit me pretty hard and I went to bed at around 8:30 and didn't wake up until I had to the next day for my shot of Neulastin at 3:30. The shot never hurts, but the meds burn going in really bad. More than any damn shot. I had to go back and get my radiation at 5:00 and they couldn't take me early so we left and went and walked around the mall for an hour. That just about wiped me out. I was so tired I fell asleep on the radiation table. The session is about 4 minutes long.

Went home and right to bed. I woke up a couple of times to force myself to eat, but it's all I can do to stay awake for 20 minutes without flopping back in bed. All of that's not that bad really. I just feel ick today. My kind of chemo-nausea is mostly just bad heartburn and it's really bad right now. Acid-reflux burning in my chest and throat bad. I just got up to eat and my hands are shaking from how nasty I feel. And the mucus isn't gone, it's just taken a nastier form and really buggin me. Overall I'm feeling better. I haven't had to take any pain meds at all today. Which is kinda funny since I just got some good straight up morphine for pain and no reason to take it. Probably for the best. I have 6 more days of radiation and my mouth is probably going to get worse before the end.

Oh well, that's enough feeling sorry for myself for one evening. 4 more days and my baby gets here! Can't wait, I miss her so much. You're my reason for livin kiddo!!