I had a series of doctor appointments in August / September -- one with each of the three primary oncologists (Surgery, Radiation, Hematology). All declared that things still looked good. All indicated that I should continue to get better. The lingering issues continue to be: - very low white blood cell count - less than optimal saliva production - general weakness - brownish-white coating on my tongue preventing full recovery of taste I've begun reading everything I can about cancer recovery -- specifically as it relates to any dietary or lifestyle changes that could impact my immune system and "kick in" the production of white blood cells. About a month ago, I made the decision to take as much sugar and simple carbohydrate out of my diet as possible. This had a couple of effects: 1. I lost about 8 pounds in the first two weeks after doing this, 2. The coating on my tongue went away, my tongue is pink now, and I can taste pretty much everything! So....I probably had a lingering yeast infection that was destroyed when the source of yeast nutrition - sugar - was removed from my diet. I'll have another set of blood work done at the end of next week and I'm really hoping that 5+ weeks on this diet regime will have positively impacted some of these blood numbers. If not, at least I hope my blood sugar dips a bit, I've always been near the top end of "normal" ....also known as pre-diabetic. I am getting stronger -- but it is a joke how little strength / stamina I have. I've tried "jogging" -- not running, just jogging - I can get maybe a quarter mile before having to walk about a mailbox or two, then I can alternate jogging a few mailboxes before walking one or two. It takes about 15 minutes or so to make the 1.25 mile circuit that is our "block". The other thing that's a real hassle is related to the dry throat. Since my throat dries out easily, I drink a ton of water. That leads to a ridiculous amount of time spent going to the bathroom. In an effort to ease this problem, I've basically cut out caffeine and alcohol, but this is still an issue and it really controls my social life in insidious ways. (For example, I won't get into someone else's car for a drive longer than 15 minutes so I don't get trapped without the ability to control being able to pull over to use a bathroom.) Great stuff, huh?

Medi-Port Removal

Was very pleasantly surprised that both the Radiation and Chemo docs agreed that my medi-port should be removed. When it went in, I was told to expect to keep it at least a year and maybe up to 3 years. both docs said it could do more harm than good at this point and to get it out, so they "ordered" the surgery. Got my call yesterday to schedule and was very, very surprised to learn this is an "office" procedure with only local anesthesia. I can drive myself there and back and should not expect to even need pain killers beyond Tylenol or Advil. So, I'm getting it done tomorrow -- Thursday -- at 9:00. Same doc who put in the port will be doing the removal. I can't wait to have this thing out of my chest -- it doesn't hurt, it doesn't even hardly bother me....it is just freaky! Good riddance.

PET Scan - ALL CLEAR!!!

Just returned from meeting with my Radiation Oncologist to review last Friday's PET Scan.... The result was "all clear"..."a perfectly normal PET scan". The doc moved the conversation to the removal of my "medi-port". This was installed by the Chemo team - who I see next week -- but the Radiation guy says that he will push them to remove this "sooner, rather than later". So, definitely a good visit and good result. He didn't even need to stick the camera down my nose today! Awesome. Gotta find a way to celebrate tonight!

Waiting for Thursday to Review PET Scan Results

Visited my dentist this past Thursday for the first time since my cancer. Great news!!! There was no new decay! I had been very worried about this as the dry mouth creates a bacteria-friendly environment where tooth decay can prevail over rigorous dental hygeine practices. Both my hygenist (the same person has been my hygenist for over 10 years) and my dentist said that my dry mouth was "mild to moderate, at worst" and that things looked very good. My thinking that my "teeth moved" during treatment was put down to weight loss by both -- so I didn't have some sort of tooth-to-bone ligament failure during my treatment, either. Both stressed the need for continued vigilance around brushing, flossing and keeping my mouth hydrated -- but they seem to believe that my mouth came through the worst of this without any major issues. Awesome. Friday morning I had my 2nd PET scan at Kettering Medical Center. I had a 7am appointment and was completely done before 9am -- including having the test results on a CD that I will take with me to UC Health Center this Thursday at 10am. I expect the radiologist at Kettering will write up a report that will be faxed to UC and the Oncologist at UC will use the radiologist report along with looking at the detailed results to report back to me...and adjust/amend treatment plans, as necessary. Other than small stress related to this big milestone, most other things are going well. I can hear out of both ears now...that's a huge bit of recovery. I can taste most things and can pretty much eat anything -- although there's lots of things I choose not to eat just because they don't taste particularly good anymore. (Oh, Pizza, how I miss you....) I've been cutting the grass with my self-propelled push mower and even running the weed whacker to edge and clean up the sidewalks -- although that leaves me sore and drained. This weekend, we had hot, sunny weather for the first time since my treatment and I noticed that the sun absolutely affects my skin (all of it, not just the treated skin) much faster than ever before. This is definitely a new thing for me and will take some adjusting. Will post again after this Thursday's meeting -- which is with my Radiation Oncologist. I also see my Hematology Oncologist next Wednesday (this is the "chemo guy""). Hopefully I will get an "all clear" from both of them and then I'll be partying. (with water!)

Recovery Proceeding Well -- Big Day Friday (PET Scan)

May 10. I've been back to full time work for a few weeks. I'm eating well now -- able to eat almost everything. In fact, taste is not driving any eating decisions anymore. I also am no longer experiencing any pain in swallowing or due to high acid foods. I can also tolerate moderately spicy foods -- but don't really have any appetite for very spicy foods. Breads, nuts, chips are all "challenging" -- I can eat them, but they mostly stick to my teeth and require frequent sips of water to get down. In other words, they're not really worth the effort. But, I am doing fine with sandwiches -- especially if there's something moist inside, like a juicy hamburger or corned beef and sauerkraut! One other fantastic improvement is that the hearing in my left ear has returned. In my follow-up on April 23 with the Surgical Oncologist, he presecribed a steroid nose spray and recommended that I take Claritin daily. Don't know if these two things helped or not, but I can hear now. Probably not at pre-treatment levels, but compared to how its been the past 3 months, this is fantastic! I will see my dentist this coming Thursday. I last saw him in early November -- when I knew about the lump but thought it was just a swollen gland. I visited the office in January to have the "fluoride trays" made, but I did not see my Dentist then. I am a little nervous about the visit as I feel that my teeth "moved" during treatment and it was a big possibility that I'd have a lot of tooth decay due to the dryness of my mouth. This remains a big issue and something I'll have to manage the rest of my life...unless I get them all pulled like my father did. So, a little bit nervous about Thursday's dentist visit. Friday, I have another PET scan. Like the first time, I will wait around after to carry a CD of the Scan from Kettering Medical Center to the UC Health Center where my Oncologists are. I meet with the Radiation Oncologist a week from Thursday to review the PET Scan results. I honestly do not know what to expect. I can only hope (and pray) that the scan is clear. If it is not, I've not had any discussions about what that might mean in terms of follow-on treatment...How urgent it would be, for example. All I know is the Radiation Oncologist told me at the start that they cannot use radiation again on the same area...ever. So, if it is not gone in the neck area, I'll have only Chemo and Surgery as treatment options. If it had spread to other areas then, I suppose, radiation, chemo, and surgery would be options -- but, as I say, I don't know if it would be urgent to go after it right away or if they'd want me to recover more strength (and body weight) prior to treating again. I'll post again after the dentist and after the follow-up a week from Thursday.

First Round of Follow-Ups Complete

I saw my Chemo doc on Thursday last week and my Surgeon/Oncologist yesterday - both appointments were positive. On Thursday I had a 6 week follow-up with Hematology/Oncology (the Chemo doc). All they did was bloodwork and a quick oral update. That appointment was "necessitated" by a few bad results on prior bloodwork, otherwise they'd not have had me back for 3 months. When they take blood, they do two vials. One for a CBC (Complete Blood C???) and one for a Comprehensive Metabolic Panel. The results will be uploaded to my web site by the end of this week, however, but the "instant results" (CBC) were good for white blood cells, red blood cells, platelets, etc. The "creatinine" (Kidney) and the liver enzymes come back in the Comp -- which they've seen, and not phoned me, indicating the numbers are OK. I will see this doc again at the end of June. Yesterday, I saw the Surgeon. This is the first doc I saw at UC Health and he "owns" my case. He did the biopsy and represented my case at the "Tumor board" which resulted in the Chemo+Radiation (and no Surgery) treatment plan. Dr Casper asked a few questions about my ability to eat and swallow. He asked if I had any issues and I told him about my loss of hearing on the left side. He walked out and got me a hearing test down the hall which showed a signifcant "Moderate to Severe" loss in the left ear -- but "normal" on the right. This confirmed what I knew, that this was not systematic hearing loss caused by chemo, but rather localized loss on the left where the radiation was stronger. He saw "fluid" in the middle ear but no sign of infection so advised me to give it another 6 weeks to heal on its own. I have noticed occasional "clearing" of what I perceive as a blockage and I mentioned this to him which uncovered that I'd started taking Claritin a few days ago for seasonal allergies. Upon discovering this, he advised, and prescribed, Fluticasone (steroid nose spray) to try to reduce sinus swelling and potentially help get the hearing back faster. Aside from my hearing, Dr Casper used a camera to look down my throat at the tumor site and he reported very positive results there in terms of scarring and inflammation being minimal to non-existant. Likewise his assessment of the area based on feeling for lumps from the outside was also positive. Overall, I have little difficulty eating. I'm even able to eat sandwiches now -- although I do overload condiments a little to add moisture. I can drink Sprite or 7-Up without diluting them -- although I'm mostly just drinking water now since it tastes normal again. I am still avoiding spicy foods although my tolerance there continues to increase. I don't really have any foods left that taste "wrong". Tomatoes and beef were the worst and I ate a grilled hamburger with Ketchup and a slice of fresh tomato last night and it was awesome! Next step....PET Scan on Friday May 17 and follow-up with Radiation Oncologist on Thursday May 23 to review results. I also have follow-ups with the other docs in June. Not sure what kinds of things might be recommended if the scan is not clear -- so hoping and praying for the best outcome there.

Mid-April Update

I have a bunch of follow-up doctor visits coming up: 4/18 - Hematology/Oncology - this is the "chemo doc", who will check my blood work to see how my Kidneys and Liver are doing and also to look for a return to normal range of Red Blood Cells, Platelets, White Blood Cells, Iron and a few other minerals. I've been taking supplements, so hopefully these values will be normal ranges. 4/22 - Otolaryngology/Oncology -- this is the surgeon that I originally met with in December who did the biopsies and took my case to the "tumor board" which then set-up the treatment plan. He is an ENT and I'm planning to discuss my hearing loss with him. Not sure what he'll be doing or looking for in the visit. 5/17 - PET Scan (this is the near full-body scan (head to mid-thigh) that looks for any signs of cancer in/around the lymph system, since at least one lymph node was "involved" in the left side of my neck 5/23 - Radiation / Oncology follow-up. This is the big, post scan follow-up to determine the effectiveness of the treatment I went through in January / February and to hopefully declare me "good to go" for 6 months....or not. In terms of recovery, I'm able to eat just about anything now although the dry mouth makes somethings just not worth it. I have some taste, but I notice that after the first or 2nd bite, I really don't taste anything. I honestly don't know if it used to be like that or if it's like that for everyone or if that will change. I do still have to avoid food that is too hot (temperature) or acidic. I have not tried anything spicy but expect that would be an issue, too. There is something in my throat -- either an open wound still, or sensitive scar tissue, that hurts when I yawn and hurts with certain foods. I seem to be at the stage in my recovery where I'm regaining strength...but not yet gaining weight back. From the absolute low point of mid-Feb through mid-March where I was only consuming about 600 calories a day while sleeping 18 hours and sitting/lying the other six, I am now getting up around 7am and going to bed around 10 or 10:30, no naps. I'm working full days and am generally productive the whole time and I'm out and about after work and weekends, too. I've cut the grass twice in the past week and I went to three soccer matches this past weekend and also got out for "evening walks" in the neighborhood four nights. I'm trying to build my strength back to the point that I can be of use when it comes time to move Abby back home from college in a few weeks. Right now, I don't see me being much help.

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!

Rock Bottom -- Or, It Can Only Get Better From Here

Last Radiation treatment today....yeah! No more daily trips to West Chester, OH for treatment....except I'm on a daily IV Hydration schedule through the end of the week, minimum. See, my throat is so pained and swollen that even drinking water / Sprite is a chore, so they give me IV Fluids and all I really have to worry about swallowing is the 40 oz or so per day of Boost, Muscle Milk and Carnation Instant. Now that it is no longer "getting worse" -- they are saying it will start to actually get better in a week or two...but not before. So, I'm stuck at pretty much "rock bottom" here for a week or so. And it is rock bottom, which is why there have been no blog updates. I am relying heavily on pharmaceuticals to get through the day and most especially the night. So, we're still counting the days....but we're now "counting up" and with no specific number in mind other than a "week or two". Please keep praying if you have been....I've been praying too, especially in those dark hours between sleep over night, when I'm too tired to get up and try to do something but not tired enough to fall back asleep (or maybe too tired to even sleep). Love you all -- thanks for all the cards, too! Rich 145 lbs now, in case you wondered

It's Getting Dicey....

Had Chemo last Wednesday....got pretty nauseous by Thursday night, very sick Friday, Saturday and Sunday. On Thursday, in my weekly meeting with the Radiation Oncologist, I got the "We're worried about you...." speech due to weight loss. Now, the weight loss is more or less 100% a result of the nausea which is a result of the chemotherapy. For some reason, the "standard" nausea meds just don't cut down on the nausea for me unless I take them at "knock-out" doses. Had this discussion with the Doc and his response was, "Then you might be done with Chemo. We believe we can cure this cancer without anymore Chemo." So, I guess we'll see. What we did see last week was both my Kidney AND Liver functions are compromised -- so this, along with the weight loss -- is part of what's driving the Radiation Oncologist. The weekend was tough -- very little eaten and even struggles getting in fluids. Joyce actually wanted to take me to the ER Friday night for IV HYdration but we held off, hoping a night's sleep would tame the nausea. No luck, so Saturday afternoon around 3 we drove over to the local ER and went in for IV hydration. The good news is that Joyce had called my Oncologist Friday night for advice and he called ahead to the ER and spoke with the doctor on call. When we arrived Saturday, there was no hassle at all with having to explain things or convince them that all that was needed was IV fluids. As a bonus, they re-ran the Liver enzyme tests and my liver enzymes were much better (only slightly out of range versus way out of range). So, today was better, the nausea was tolerable and I've managed to get plenty of fluids and even a little solid food. For all those who are calling...please understand, it hurts me to talk. I am only picking up the phone if a doctor is calling. I've decided that the radiation therapy must be equivalent to a 60-day surgery which is performed incrementally and the wound is never closed or allowed to heal. That's what my throat feels like, anyhow, like I have an open wound, anyhow. So, there's 7 radiation treatments left. 9 days counting the weekend. I'm sure I'll make it to/through the final treatment. From there, he real healing can begin. That will be slow at first as eating & drinking will only be worse / harder in 9 days time. But as sure as day follows night, I'm sure that the healing will happen and I'll slowly get back to some sort of normal....

Two Weeks Left....

Thought I'd post a pic that Joyce took last week of me getting strapped in for a Radiation treatment. In the top pic, you can see the "lasers" used to align the marks on the mask (there are similar marks on my chest and shoulders) so that the radiation is aimed within millimeters (less than 3mm) of the target.

I've got two weeks to go. I should be finished two weeks from tomorrow, that is. These days, I've got all the side-effects stacking up against me -- mostly making it extremely difficult to (want to) eat. I can physically chew and swallow -- but the combination of ever-present nausea, dry mouth and distorted taste make it a massive chore (mentally and physically) to eat and drink. Imagine that simply drinking water makes the nausea worse. Anyhow, just holding onto the light at the end of the tunnel, so to speak. Oddly, I've been whiling away my time by watching alot of TV...mostly "Food Network" (which Joyce thinks has to be torture). There's a lot of episodes of Man vs. Food on and, these days, when I eat, I feel alot like Adam Richmond just powering through a 7lb breakfast burrito. I also like to watch Triple D...and I've been building a bucket-list of foods that I want to eat when I get my taste back -- things like a Reuben sandwich, a cheese steak, pizza, smoked pulled pork, Skyline chili, a meatball parmesan sub....mmmmm....bacon....donuts....ham&swiss with dijon mustard! I will certainly enjoy my food differently ...more thoroughly....after this is over.

Feb 6 - Chemo again

Started the day with Radiation at 7:30, then over to Chemo. Found out that the Creatinine was "down" to 1.79 or so and therefore Cisplatin was not an option. So today I received 150mg of Carboplatin in a simple 30 min, 250ml saline drip. I also got a simple 250ml saline drip. (Far lower than the 1.5 liters I'd gotten the prior 7 days -- and less time!) "They" say the nausea and side effects won't be as bad, but I'm not taking any chances and I started on the overlapping schedule of Zofran and Phenergrin as soon as I got home. They also gave me some steroids there so I have a bit of an appetite today and I've "chowed down" on a yogurt (Strawberry Yoplait), a cup of egg drop soup, 2 "boosts", and cup of Trader Joe's Carrot/Ginger soup. Let me state that everything tastes uniformly bad...I'm after "ease of eating". I do my best to pass this food directly from the spoon to the back of my tongue and swallow straight away. Any swishing around the mouth causes me to "taste" -- and that just ruins it! Looks like from here on out, it'll be Carboplatin Wednesdays. Not sure if there's 2 more doses on the cards, or 3. Currently my last day of radiation is a Wednesday -- the 26th -- so it doesn't seem necessary to do chemo on that day -- if the point of the chemo is to enhance the effectiveness of the radiation. I guess we'll see. The Radiation folks called this morning. They want me twice tomorrow -- first for my normal treatment at 7:30, then at 8:00 they want to "re-scan" or "re-calibrate" the treatment (due to weight loss). When you get smaller, things move relative to the absolute placement of the X-ray guns in the "Tomatherapy" machine. This should be the final calibration (they did this already at 2-weeks due to the big weight loss in the first week.) I estimate that the total weight loss remains under 20lbs, but there are 3 more weeks of treatment...plus several weeks after where things don't actually get much better quickly. On top of Dry Mouth...and Taste issues...my throat is starting to hurt full time. Last week we got a "Miles Mixture" to help with that, but for some reason, the ingredients were: Nystatin, Doxycyclene, Cortisol, and Benadryl. No Lidocane or Benzocane...? Possibly, the focus was on keeping the Thrush from coming back. We asked for something with a numbing agent and they handed me a bottle of Lidocane. It is a very viscous product that you put in the back of the mouth and swallow. First try (this morning), I put it on a spoon and put way back....triggering my gag reflex....which went full bore when the Lidocane didn't actually "go down" so much as sat on the back of my throat. Spent the next ten minutes in the bathroom heaving my near-empty stomach contents out. So, we called to get Lidocane in a different form - which we can pick up tomorrow. It's like my mama used to say, "If it's not one thing, it's another" (or maybe someone else's mama used to say that.... :-)

Feb 4 - Denied Again

After spending all of last week and this weekend vigilantly tracking my hydration levels, I was sorely disappointed to "fail" the kidney function blood test this morning and be denied my second round of chemo. The doc ordered hydration today and tomorrow with testing Wednesday and a final decision on which chemo to give on Wednesday. I don't believe Hydration will make a difference. Last Monday, Creatinine level was 2.27. Wednesday before hydration (so after only 2 sessions) it had dropped to 1.97. Today, after 3 more sessions of IV Hydration (along with "normal" drinking) and the weekend where I am certain I achieved 100 oz both days -- the number sat at 1.89 -- nowhere near the 1.27 level required and far above the 0.9 level I had prior to the first chemo treatment. Clearly this is "me" and my kidneys' susceptibility to the Cisplatin...as all other "markers" are in the normal range -- magnesium, calcium, platelets, red blood cells, etc. To be honest, the Chemo nurses believe that "Carbo" is equally effective and far less toxic. I think the key is that the "studies" which put me at 93% probably cure are based on the combination of Cisplatin and Radiation -- and there are no definitive studies with those kinds of numbers for the other combinations. Noting that patients who start on drugs other than Cis do so because their kidney function is already weakened in some way and therefore are not in the group "otherwise healthy, non-smoker, non-drinker except HPV-based Squameous Cell Carcinoma of the Oropharynx"... I am sick of IV's...though...but it is still far too many days out to try to start counting down. I do believe the end of treatment will occur on this calendar page...not sure which day, though. Radiation went on schedule today, although my Squeeze playlist (4 songs) ended before the treatment was up. Better planning tomorrow. I'm thinking Tom Petty.

Jan 31 - Hydration Week

So this week has been frustrating! Monday - Radiation facility having difficulties so I went over to chemo with a chance to come back later for radiation. At Chemo, it was discovered that my kidneys had not been functioning fully and we would not be doing chemo this week but I would be having hydration Mon - Weds. The key "marker" is Creatinine. Prior to starting on Jan 7, the level was 0.9 against a "Normal Range" of 0.76 to 1.27. On Monday of this week, this number was 2.23. After hydration, I returned to the radiation facility around 11:30am and received treatment around noon. (Someone skipped lunch to fit me in!) Tuesday - Radiation facility down again. Over to Chemo to for hydration. At 10:30, I went back to radiation facility as they said the technician had arrived, replaced the part and only needed to reboot and run diagnostics. At around 11:15 they came out and told me the machine failed the diagnostics and we'd reschedule. At this point, my frustration overflowed a bit and I asked to reschedule all remaining radiation treatments from 7:30am to afternoon. They were able to slide me into a 12:30 pm slot -- so at least if the machine is "down" first thing, I won't waste my time. Wednesday - Radiation at 12:30 without a hitch. Chemo for blood work, hydration, and a scheduled visit with the doc. Good news, the Creatinine is down to 1.97 after only two days of extra hydration. Doc says we'll do chemo on Monday no matter what. If the Creatinine is within range (below the 1.27), we'll do Cisplatin at a 20% reduced dose (due to Kidney and Hearing side-effects). If the Creatinine is not below the level, we will proceed with Carboplatin which is not as kidney toxic...but would require weekly treatments for the remaining 3 weeks of radiation. I'm pretty sure I'd prefer only one more chemo treatment. We talked about how much fluids are required, as I'd been told 64 oz a day and I'm certain I'd been hitting that mark. The doc said that 100 oz a day is a better mark to shoot for, but that number includes all fluids -- the "Ensures" I've been "eating", the clear soups, smoothies, etc. Thursday (Today) - will head down for radiation / hydration in a short while. Have already consumed 28 oz of fluids today. 8 oz of Ensure for "breakfast" and 20 oz of ice water here at the office. We see the Radiation doc after today's treatment and will try to be civil as we voice our frustration over the extension of the treatment caused by the unreliability of the treatment facility. In my mind, every day this drags on is more pain and suffering and it delays the start of the real healing after this treatment is over.

Jan 28 - Chemo Postponed for a week

My kidney function wasn't where the doc wanted it to be so he decided to push back the 2nd round of chemo for a week. We're doing IV hydration for 3 days this week and we'll go back in on Monday next week and take a look at the labs again. I know I'm drinking at least 64 oz of water a day, in addition to pretty much "eating" only soups and liquid meals. By "normal" standards I should not be dehydrated but the chemo and radiation definitely screw up how the body works. I'll just have to double my efforts to increase my fluids....and stay close to a bathroom! Got my 14th Radiation treatment done this afternoon -- the machine was "down" again this morning. I'll be just past halfway through at the end of this week!

Week 3 underway

22 Jan - Back at it today after a day off due to MLK holiday.  No issues with the radiation -- took a picture of the mask today (on my iPod) -- will upload it once I get the pic onto my PC.   Still having hearing issues, have a meeting set on Friday morning with the hearing lab.  Want another test prior to Chemo "round 2", which is scheduled for Monday.   Also trying to get an appointment with the therapist whose role is to help me continue to swallow properly throughout this treatment.   I've not had difficulty with this yet, but am definitely starting to feel things differently in my throat.  It is not hard to imagine this can become a huge issue.   It is difficult to eat enough food now due to a combination of factors: 1. I always feel "full" because I drink so much to keep my mouth & throat wet, 2. My sense of taste is whacko, so very few things taste "right" and even less tastes "good", 3. I'm tired from interrupted sleep.   I get up about every 60 to 90 minutes to wet my mouth & throat.

On the good side, the treatment definitely seems to be working.  The tumor on the left side that seemed to bind several glands (probably the saliva gland along with at least one or more lymph nodes) is no longer a large hard mass.  It is both smaller and now is soft, like normal tissue again.   Not sure when we'll have any actual scans whose purpose is to measure the size the tumors to gauge the effectiveness / progress of the treatment.  I'll ask the docs that on Thursday when I see them again.

18 Jan - 9 Treatments down, 26 to go....

Week two is down.   On the plus side...the mask really doesn't bother me anymore.  On the down side, the side-effects are starting to pile-up -- especially the dry mouth and foods "losing taste"....

We get Monday off due to the MLK holiday, so three days off and then back at it on Tuesday morning!

15 Jan - Radiation #6

Yesterday's radiation was cancelled due to equipment issues.  We had a lot of rain and the site lost power over the weekend.   I'm first appointment of the day (0730am) and by 9 they still hadn't gotten all the equipment "rebooted" and properly networked -- so we just tacked one on at the end!

Meanwhile, we did do a new CT Scan -- as "ordered" last Thursday -- due to weight loss in the tumor area and a desire to continue to be a precise with targeting as possible.

Today, I had normal Radiation at 7:30 and will do so the rest of the week.

Aside from tiredness -- which I attribute to waking up so much during the night -- I felt great today.   I'm gettting up for 2 reasons.  First, my mouth is dry, so about every hour I wake up to get a few sips of water to moisten things.  Second, I'm hydrating so much that while I'm up, I might as well take a leak.  Pretty sure this is just how it's going to be for a few months.   Seem to have finally crested the hill on nausea.  This means that at least I'm eating enough now that I'm not being woken by hunger pains.

Continuing to "hydrate" as the "big risk" from the Cisplatin chemotherapy is potential kidney damage -- so taking no chances there.   However, another risk is hearing loss, and I'm definitely experiencing changes in my hearing -- it is becoming very sensitive....annoyingly sensitive.   Going to research that some more and do everything I can to save the hearing.

Along the way, lots of friends are helping out with tips, research articles, etc with ideas helping me ride this out the best way possible.  Thank you all!

I'm going to start building a list of things I'm going to do once this is over.   Right now, I'm just waiting for the day when I will next enjoy a Campioni's Sausage and Extra Cheese Pizza!   ....and a great Belgian ale....

Thurs, Jan 10 - Day 4

A couple of notable things:
1. Yesterday, at 1pm, when I sat for "hydration", my BP was 120/75.  My first nearly normal reading in weeks.  It was again 130ish over 90ish this morning immediately after radiation...and that "mask".
2. Today's radiation included a visit with my Radiation Oncologist.  Seems I've lost quite a bit of weight in my neck since the machine was programmed and we'll need to reprogram the machine so that the bulk of the treatment is hitting the target areas.   With my face thinning, right now they're hitting too much epidermis -- which is not desired.  Adjustments will be made in the next few days, I guess.
3.  The weight problem follows from nausea -- which I have really not been able to kick.  So,....Chemo leads to nausea leads to lack of appetite and inability to sleep.  Vicious cycle.  Today he told me to change the pattern of my nausea meds - which I've done.   Let's hope this breaks the cycle.  I have managed to eat 3 times today -- which is way more than the past 3 days.   Who knew eating would be hard this early on -- and not from pain associated with eating -- just overwhelming nausea.  It's like I took a boat into the ocean without dramamine and a huge storm blew up and has stayed for 4 days....it is that bad.

Radiation tomorrow morning then I get a weekend off -- hopefully to recuperate a bit and get back on top of this!

Jan 8 - 2nd Day of Treatment

7:30 am - Radiation.  This went better today.   First off, I was mentally prepared for the length of time I'd be in the mask -- that helped.  Then, I think the mask wasn't quite fitted correctly yesterday.  Today it seemed to have more breathing room.  Finally, I brought my iPod in and they have a little speaker unit to plug into.   I had set-up a few playlists but went with 3 consecutive live versions of LaVilla Strangiato.  Clocking in at around 8 min each, I'd hoped to be in and out before the 3rd one queued up...but it took about halfway into the 3rd or about 20 min total.  I can definitely feel a bit of stinging on my face/neck on the side that is being radiated.  As I understand it, the same level of inflammation is occurring throughout my tissue.  So, two down, 33 to go!

8:30am - Hydration.  After radiation, I went straight over to the Chemo clinic for "hydration".  They mandate two days of hydration following the chemo treatments I'm getting.  So, today, I strapped in for  a liter of saline + magnesium from 8:30 to 10:30.

After treatment, I went home for lunch and to change clothes and came into the office afterwards.

I'm dead tired, having failed to keep up with nausea meds yesterday and waking up at 3am with a real bad case of it.   Didn't realize it was nausea from the treatement and I had medicine for it, I kept lying in bed til 4:30 when I got up and took a Compazine and settled on a recliner in the TV room with my alarm watch to get me up.   Hopefully, I can manage to stay awake late enough this evening that I'll sleep through and be better rested tomorrow.   With Nausea comes loss of appetite.  Wasn't hungry yesterday and not so much today.  Gotta eat, though.  I can see where this will get really hard -- not hungry, lose your sense of taste, and it starts to get hard to swallow (hurt to swallow, even) -- yeah, I can definitely see how this will get hard over the next two months.  Longer, really, as the effects don't exactly ease up immediately after the last treatment.

Right now, my biggest worries have to do with the Radiation and the mask.  I literally can't move.  What if I have to sneeze.  Or what happens on the days that my nose is too stuffed to nose breathe?  You know how hard it is to get Sudafed these days.  This morning, with the nausea, I was legitimately worried that I'd have to throw up.  They assure me they can get me out of that mask in seconds...but I doubt it covers those situations.  Worse, if you stop the treatment, you probably have to either skip it, or start completely over.  Each day's treatment involves a bit of machine calibration, followed by some sort of rest period (I assume this is processing the calibration data into the "program" that aims the treatment) and the actual treatment time is 8min.  So, roughly 20 min in the mask.  Last I want to do is reset that clock!

Jan 7 - First Day of Treatment

7:30 Radiation --  This went well...the "mask" is difficult to adjust to...it holds my head completely immobile, including immobilizing my jaw.  It is really tight.  I assume it'll get easier -- meaning I'll panic less when it's on.

8:30 Chemo...   Well, this started with "hydration", 1 liter of saline/magnesium solution over two hours.  Near the end, I took (by mouth) some steroids and anti-nausea medicine and they added some anti-nausea into the drip along with a diuretic.   Well, I'd been peeing every half hour, the diuretic dropped it to every 15 minutes.  After the liter of saline, they added the bag of Cisplatin which was drained over the next hour.  Then, another liter of saline over another two hours.   I finished up at 2:30pm.

They said if I get "sick", it will be nausea and that'll most likely come later in the work.  There's a chance it won't be bad for the first round of treatment but it probably will be for the next two.  We'll see.

I let them leave the needle in the port so I don't get stuck again tomorrow and Wednesday.  I see the Chemo doc Wednesday during the hydration treatment.  I expect to see the Radiation doc on Thursday after the Radiation treatment.

So, it's radiation every week day at 7:30am.  I had chemo today and hydration tomorrow & Weds then it's just radiation until Jan 28 which is the next round of chemo.

Port Implant

4 Jan 2013 - Had the Port Implant yesterday.   The surgery was not a problem, but afterwards....having this tube in my upper chest / neck just feels weird.   I guess I'll get used to it -- at least "everyone" says you get used to it...  

Everything seems OK with the implant today.  There's some bruising in the neck area where they inserted the tube into a vein - and, of course, there are two incisions that are stitched up.   Oddly, the incisions don't really hurt / throb today.  As I said, my biggest issue is adjusting to the "tugging" I feel every time I raise my right arm or turn my head.

But...all the ducks are lined up to start Monday.  I have my first Radiation at 7:30 am and the chemo office opens at 8:30 and I'm scheduled to be taken immediately.   On Tues & Weds, I'll have radiation at 7:30 and then go (across the street, basically) to the chemo for "Hydration IV".  AFter that, it should be just radiation for the remainder of the first 3 weeks until the 2nd chemo treatment.

Confirmed Start - Declined "Research Study"

02 Jan 2013 -

Confirmed the following:
 - Port Implant -- tomorrow at 1pm, "Same Day Surgery".  Abby is taking me.
 - 1st Radiation - Monday, Jan 7 at 7:30am (first appointment of the day).  Joyce is taking me for this.
 - 1st (of 3 total) Chemo - Monday, Jan 7 at 8:30 (first appointment of the day).  Hope I can do this on my own.  We'll see how bad I feel after Monday.
 - Hydration IV - Tuesday & Wednesday at 8:30, right after Radiation. Again, hoping to do this on my own.

Last week, I declined to participate in a research study.  The planned / recommended course of Chemo for my type of cancer is 3 doses of Cisplatin (1st day, midway through, last day).  The study would've placed me 50-50 into either A) 2 doses of Cisplatin, 1st day & midway through -- skip the last dose), or B) Treatment with Erbitux.  After lots of thought, I decided to push through with more Chemo, not less, on the grounds that I'm young and otherwise healthy enough to handle the treatment in return for increased efficacy against these tumors.   Your first attack on the cancer is your best....follow-up treatments for recurrances are dodgy, so throw the kitchen sink at this one.