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.