Happy Easter

Easter Sunday.....Abby just left to return to college. Beth and Kate are in FL on Spring Break -- Beth in Siesta Key, Kate in Panama City. Joyce and I are getting an early taste this week of being "empty nesters". As for my treatment / recovery -- well, things are getting better, slowly. My throat is healed enough that I can eat quite a variety of food. Acidic and very sweet items still burn. Also, my stomach / digestive system is getting used to "solid food" again, so it is not so bad to eat. I'm down to only 1 "liquid meal" a day -- first thing when I wake up, I mix Malt Powder and Carnation Instant Breakfast into either a Muscle Milk or a Boost to get about 300 quick calories to get some energy right away. The rest of my "diet" is mostly soups. In the past week, I've managed: Clam Chowder, Lobster Bisque, Crab-Corn Chowder, and Broccoli Cheddar. I've also eaten quite a bit of chicken, including Chick-Fil-A chunks on Thursday, Wendy's Fish Fillet on Friday (no bun, just the fish), and I ate most of a grilled cheese sandwich today -- where I used a lot of extra butter on the bread and "dunked" in the Clam Chowder. I'd prefer to dunk in Tomato Soup, but Tomatoes and Beef are two flavors that are "wrong" -- they taste very metallic. I'd guess I'm a month away from gaining weight back. I think I'm hitting about 1,600 to 1800 calories a day now, but it seems each day I can eat a little bit more which results in having more energy to try to do more things. I'm back at work now, although not making it in by 8am just yet. I have stopped taking the Oxycodone at night, so the only "regular" medication I'm taking is 1 5mg Ativan each night for "anxiety". Hopefully when my left ear starts working again, I'll be able to stop the Ativan, too. If not then, then after my late-May PET scan -- if the results are as hoped. At the advice of the docs, I'm also taking multi-vitamin and iron supplements to try to get some mineral levels back within normal ranges and also to boost red blood cell and hemoglobin numbers -- both of which are still too low. Some good news is that my "kidney numbers" have moved closer to the normal range and I believe they're on track to fully recover within weeks rather than months. So, I don't see a doc again for 3 weeks -- unless I get fed up with not hearing and go see an ENT. At 3 weeks, they'll take blood and tell me to eat and drink more and then I think we'll all just wait for the PET Scan and the meetings to follow. Happy Easter to all

Recovering from Treatment: Slowly but Surely

Yes, things have been improving....very slowly. I made it to work on Monday and Tuesday and could've gone Friday, but "worked from home" instead. Weds & thurs were mostly eaten by doctor appts and then being a bit sick with an ear infection. My blood work is still bad -- I'm very low on Red, White, Hemoglobin and Platelets....but the doc said I didn't quite need a transfusion. But instead of not coming back for 2 months, I have to go back in a month. I can still feel pain in my throat but the pain is not overwhelming -- it gets me when I smile, yawn, or swallow hard. I also get burning if I eat or drink anything acidic, but I can tell that this is getting less as I will occasionally drink Sprite (watered down) and I can manage stronger and stronger mixtures. My taste is starting to return. So, from "no taste at all" to some things taste wrong and some actually taste right! (Honey, butter, malt -- thanks Uncle John for recommending that) The saliva situation is improving and I'm definitely getting more of an impression each time I meet with the Radiation Oncologist or the Speech/Swallowing Therapist that this is probably not expected to fully return -- but that I'm expected to adapt to a "new normal". As such, I've been forcing myself to try to eat "solid food". Last week I managed to eat split pea soup where I had to actually chew peas before swallowing. What I learned is that my issue is not just saliva -- but also my stomach / digestion are simply out of practice with solid food and I can only stomach small amounts and will have to build back up. Today, I managed a small serving mac-n-cheese at lunchtime and half a cheeseburger (Steak and Shake, single with cheese) at dinnertime. These are tough calories to plow through, each of those "solid foods" took about a half an hour to get down and each was good for less than 200 calories. I can slam down a 200 calorie shake in 30 seconds -- but I have to do the work and push through. Otherwise, I still can't hear out of my left ear...the theory here is the eustacian tube is either clogged with this super thick saliva I'm producing...or it may be collapsed due to the radiation. At any rate, I had an infection there due to trapped fluid. I've been on Augmentin since Weds and I think the infection is gone, but I still can't hear. This is one of those "wait and see" situation where there's no definitive answer as to how to long to wait before seeking other options. It is unbelievable annoying to simply lose hearing on one side and worse, none of my family can manage to adjust. They get mad at me for "ignoring them" when I simply never heard them approach or speak. So, we'll all adjust but this is quite an annoyance. Finally, we're scheduling the follow-on PET scan for 3rd week in May with follow-up visits to the docs the last week of May to hopefully get an "all clear" read-out. Fingers crossed. Certainly, I can feel that the large tumor under my jaw on the left side (secondary tumor) is not there. That area is extremely tender now as the surrounding tissue that was heavily damaged by the Radiation now attempts to heal / rebuild. I can also feel what I can only describe as a "hole" in the middle of my throat at the base of my tongue where the primary tumor was. So, I know the treatment was successful to some extent. The million dollar question is did we get it all in those two spots and did it spread (and grow) before / during the treatment...? That's what I expect we'll learn. I honestly don't know what to expect with that.

Turning the corner....

Feels like maybe I've turned the corner from getting worse to getting noticeably better. My "problem" is weight -- it keeps coming off. This makes sense -- it is hard to eat....the Radiation burned my throat pretty severely and that has been healing - very slowly. Well, the pain in my throat is much less...I really can manage without the Oxycodone, although I am still taking a single dose at night to help with sleep. The "mucous" or "phlegm" in my throat seems to be getting less and this reduces the overall feeling of nausea / indigestion. This is all "not a moment too soon" because I'm really (I mean REALLY) sick of Muscle Milk and Boost. I've started forcing down yogurts (Activia and pre-blended dannons -- no chunks) and even had some soup yesterday (potato soup with the potato chunks all smashed up). Today, I forced down a mixture of avocado & tuna that Abby whipped up. Took me about 40 minutes to get down "half of a serving", which Abby said had only 100 calories -- but I'm thinking this will digest more slowly (more naturally) than the liquid diet I've been on for months. My goal is to increase my daily calorie intake to the target 2,000 - 2,500. I've been struggling to get 1,000 calories per day -- often settling for between 600 and 800 calories. (this is why I'm losing so much weight....duh!) As long as the nausea / indigestion stays away, I know I'll be able to force myself to eat. It is hard, there's a couple of "stumbling blocks". First, I have to try to avoid smelling my food. The smell signals my brain that certain tastes are coming...and, of course, those tastes never arrive. So, it is best if I don't smell the food...I try to hold my breath and keep the plate or cup far away from me. The second issue is if I'm not just drinking it down, I have to manage the urge to chew vs. the need to swallow quickly. Without saliva, when I chew, all that happens is the food in my mouth disperses. But, to swallow, you need it in a nice little wad. So, right now, chewing is not really helpful. I have to get the bite size just right and make sure there aren't choking size chunks in what I eat. Hence, my description of eating as "forcing it down". There is no taste, in fact, taste works against me (combined with smell). And each "bite" is a challenge to swallow without chewing or activating my "gag reflex". So, yeah, I've lost some weight and eating is a bit of a challenge right now. But, in order to stop with the Boost / Muscle Milk, I'll gladly push through the eating issues. Gotta get the calories up -- I think my lack of calories has been slowing down the healing process -- my body just hasn't had enough fuel to really get going with the healing. So, less pain in the throat combined with less mucous have really been the turning points. Just hope I'm not kidding myself and this really does continue to improve. I so desperately want to enjoy eating again. For about 6 weeks, all I'd do is sit and watch Food Network on TV. Mostly Diners, Drive-ins, and Dives, Good Eats, and Man Vs. Food (on Cooking Channel). But, finally, it started getting to me...making me sick just to watch. So, I've been watching DIY now -- Holmes on Homes and shows about home renovation and upgrades. My place needs some work -- there are definitely some Spring / Summer projects that are getting put on a list! So, for those reading hoping for some more upbeat news, I hope this fits the bill. I want to be honest about the struggles / side effects, though, and how I've managed them, just in case anybody reading this should happen to get the same type of treatment I got. They'd at least have a realistic expectations. I feel like the docs shielded me a bit from what was coming, choosing to only reveal things in stages as I continuously adapted to a "new normal". Even now, I'm not convinced the docs have revealed all about my "recovery" of saliva and taste. I get the "everyone is different" and "you'll notice improvement in about 6 weeks but it usually takes 6 to 12 months for full recovery". In my experience, this means that by 6 to 12 months you'll have worked out how to deal with your new normal, whatever, that is - and you'll have accepted it and moved on. So, I'll keep up the blogging as things come back...I'm still missing hearing in my left ear, saliva, taste, and who knows how my teeth have held up through this "dry mouth"...but I've done all I could manage to keep them clean and not let sugars coat them for lengths of time. Enough for now!

Frustrating!

Last treatment was Wednesday. I am not feeling much better. If anything, it feels like they raised the intensity of the final treatments and I'm still getting residual effects. Last Monday was the first that the skin on my neck showed signs of skin peeling (like with sunburn) -- and only in a few "high intensity" spots, right where the tumors were. Now, seven days later, pretty much my whole neck (front and sides) and upper chest are peeling and its pretty red / raw underneath. (they gave me cream with silver and lidocane in it to put on these areas) The thing is, the docs always said that whatever it looks like on the outside, it is as bad or worse on the inside. So, the outside has continued to look/be worse since Wednesday's treatment, so I conclude the inside is, too, and it sure feels like it. Now, the problem on the inside is a combination of just plain old pain in the throat -- for which I'm allowed to take oxycodone every six hours -- and the constant "mucous" (dead tissue?) that runs down my throat causing massive indigestion. I'm unable to "cough it up and out"....so it all gets swallowed. It seems to just build up in the stomach and digestive tract. Adding in that many of the meds I take (anti-nausea, oxycodone) are all known constipators and it's a full time job managing symptoms and side-effects. I hadn't "needed" anything for the pain until last Monday and I hope to be able to stop it, shortly. I thought yesterday was "better" -- I was able to drink ( a mixture of sprite, water and club soda) all day long, maintaining my hydration with an IV. I also got more nutrition yesterday than any day I remember. But today was back to massive indigestion/nausea and a struggle to get fluids and nutrition. I'm still plugging away at it, but I'm definitely not on a "steady increase in health", yet. For all those calling....I'm not answering, nor am I taking calls if someone else picks up the phone. It still hurts to talk - that has not changed. I'm often napping and when I'm not, I don't keep my phone with me. Joyce seems to have infinite patience though, as she'll pick up just about any phone call, God bless her. Not sure how this week will go...if I'll notice "turning a corner" (heck, if I even will turn a corner). I need to try getting back to work as much as possible, so it'd be really nice if all this just cleared up and went away!