July 30, 2011 - Green Shoots of Hope My Ass!!

 July 30,2011 - Green Shoots of Hope My Ass!!

Here we go again. My throat is killing me today – and much of yesterday. It continues to stay damaged and enflamed despite being 9 weeks out of treatment. The two days it started to feel good were temporary. So today it’s back to almost all nutrition getting in via my likely permanent feeding tube. No oatmeal, no mashed potatoes, little drinking of anything.

Time to adjust to reality Ben. Your future is your present. Live with it. You have a permanent bad throat and will likely never eat normally again. On Wednesday I’ll ask the doctor point blank if he’s ever had a patient fail to heal for many months or longer. He’ll probably lie to me. Or I’ll be his first.

My anti-anxiety meds are working well. I have taken them at night and they relax me and I sleep well. I even managed to get pain meds in at 2 AM with some Boost so I still did a little feeding at night. My days have shown much less fatigue and much less anxiety since I now get a good night’s sleep. I no longer feel the need to nap all the time.  I’m less stressed but more pissed off about all this. That’s a good thing really. Anxiety displays hopelessness. I can live off anger. And I can live this way.

I use the feeding pump in the day time now to pump in a can of IsoSource over a period of about an hour. That hasn’t always helped my stomach but today I discovered something that did:  Diet Pepsi!! I know I raved about Coca Cola a month or so ago and that sort of wore off. But Coke has sugar in it and it added to my bloated feeling. Diet Pepsi(Diet Coke will work too I’m sure) seems to help flush my stomach so I can add more sludge at an earlier time. The caffeine is ok too. I’m ahead of schedule with food today so maybe I won’t lose weight.

On August 23^rd I have my CAT scan to find out if the cancer has really exited the stage. Despite my pessimistic and resigned attitude, I truly believe they got rid of the cancer. I’ll be a cancer survivor with a crappy quality of life. So be it. I was able to sit down and read for a couple hours straight today. I also went to the gym and walked on a treadmill and did some light weights. I’ve been too restless and impatient to do much of anything until now. The anti-anxiety meds and some partial acceptance of my future has helped. I can adjust to this. I have no other choice.

My wife says my mustache has grown in and looks thicker and darker than before. She might be right. My sideburn hair seems to be growing in too so I’ll let it grow. Maybe I’ll let my hair on my head grow long again and hell….maybe a pony taiI.! Why not? Time for a new look.

I  guess this blog is going to go through a transition from how I recovered from cancer to how to live a life after cancer completely screws up your life. When you get lemons……….

July 28, 2011 – Green Shoots of Hope

I know this has been a bummer of a blog for some time now but today I had a small victory. I ate an entire packet of oatmeal by mouth. Yep, that’s what constitutes a win these days.

I’ve noticed the past couple days that when I wake up my throat is remarkably low on the pain meter especially when I swallow. Today I decided to test it by eating more than an ounce or two by mouth. So I prepared the oatmeal with milk and numbed my throat with viscous lidocaine and away I went. Got it down. Eight ounces by mouth. Yippee!! My balky stomach didn’t even rebel too much. Unfortunately as each day has worn on my throat becomes more painful by evening but overall I still think I’m doing better than I was. My stomach continues to be a fragile thing and it’s causing me stress to no end. I decided that I’m suffering from anxiety causing all kinds of other problems (sleeplessness). I saw RadDoc today and he prescribed an anti-anxiety drug (Ativan). I’m going to take it an hour before bedtime and then go have a long sleep (I hope). My only concern (more anxiety!!) is that one of the side effects is…..wait for it…..an upset stomach. Just what I need. This could be another short term fix.

My night feeding by pump is becoming a failure. I have to sleep sitting up which is bad enough but each night the results have been worse than the night before. I was down to getting only one can of Isosource (started with 3 before my barfarama a week ago). Last night the pump didn’t work and I didn’t even care. I just went into the kitchen and stuffed the can into my tube the regular way and then went to bed. I need to sleep at night.

Emotions:  All my normal coping mechanisms of life have left me. My wife says I’ve lost my armor. She’s right. We spent much of life figuring out how to deal with the everyday stresses and challenges. I did pretty well. I took charge, became a good problem solver and never let much bother me one way or the other. It worked very well for me. Now I have NO control and NO coping mechanisms to draw from and hence the anxiety. I’m not sure I’ll ever get the old ways back. I’m a changed man no matter how this turns out. I’m just not sure it will be for the better.

July 25, 2011 - Two Decent Days

July 25, 2011 – Two Decent Days

I say decent days because I was able to take in enough food, my stomach didn’t rebel and my pain didn’t get any worse. Such is what a good day looks like now.

I had my endoscopy today and it didn’t produce any findings to be concerned about. My stomach problems are still likely caused by my pain meds and I've reduced them enough so my stomach is behaving. I also did some “Googling” today to find others in my “it ain’t healin’” condition and I sure did find them. It seems if your throat doesn’t respond in what doctors consider a predictable manner, they don’t know what to tell their patients:  “Everyone is different”, “some people heal faster than others” etc. I found postings of people with many more months of throat pain than was advertised and found equal numbers of people who have lost substantial weight due to eating problems. So, I’m not alone. I don’t necessarily feel better about that.

I’m going to focus on nutrition over pain management at this point. I NEED calories or I’ll just keep losing weight. I’ll use the food pump at night to pump in 2 cans of IsoSource and try to take in 4 others during the day. I’ll also continue to eat some baby oatmeal and other soft stuff to keep my throat from giving up completely.

Emotions:   I really am a mess. I’m very emotional and distraught as this moves forward – or whatever direction it’s going. I feel lost and often helpless and hopeless as each day mirrors the day before. I’m still searching for a purpose in all this and have to wonder if life will ever be good enough to justify what I’m going through. I just don’t know.

July 23, 2011 - Grinding On

July 23, 2011 – Grinding On

Last night I used the feeding pump for the first time in 2 nights and used a slower pumping rate as well as using one less can of “food.” It seemed to work – at least I didn’t wake up vomiting this morning. I’m still not taking in enough nutrients to sustain myself. My stomach remains in a state of uneasiness that nears nausea so any effort at feeding me is a forced activity based on my intellectual understanding that I need to do it. I’d rather be hungry!!

I put a call into my gastro doc and he’s scheduled an endoscopy for Monday morning to check for any blockage or any other problems. I predict he’ll find nothing wrong. He also told me to try to get off narcotics. Well, I was already trying that after my experience with the Thrush meds. I’m down to 1.5 pills every 4 hours instead of 2.5. I’m staying there because there is still enough pain to warrant it. He’s probably on to something about the pain pills but this is EXACTLY the “catch 22” I’ve been referring to. I’m screwed.

I feel sorry for my wife having to endure watching me wasting away. She just doesn’t deserve to have her life disrupted by trying to take care of a decaying and barely functional husband. She’s strong and healthy; she deserves better.

I don’t even think I’m a cancer patient anymore. No visual sign of it; the upcoming CAT scan (within a month I think) should prove that.  I’m now just a malnourished wreck of a man and there seems to be nothing that can be done about that. I appreciate all the kind words (“you’re gonna be just fine”) but I admit they sound hopeful but empty. But I also understand that there’s really nothing else for anyone to say. Nobody and I mean NOBODY really knows if I’m going to be ok.

On a good but totally unimportant note, my beard is starting to grow back in some places. My mustache which was almost gone is coming in darker and fuller again. The hair on my head never left but did feel thinner. It’s thicker now too. I want my stomach and throat back instead.

July 20, 2011 – An Up and Down Few Days

July 20, 2011 – An Up and Down Few Days

Gee, where do I start? I’ve been using this night feeding pump for 5 nights now and have adjusted to the process. It seemed to be doing the job of getting 3 cans of IsoSource into my stomach over a 9 hour period leaving me 15 vertical hours to get the other 3 in. At least until today.

I woke up around 6 AM again and detached myself from the empty pump container and went back to sleep feeling a little full but ok. By 9:15 AM I was violently sick. The most vomiting since the chemo days. Now what?

Back to that in a few……meanwhile I went to my RadDoc yesterday and asked if I had Thrush (yeast infection of the mouth) since my mouth and throat were so horribly sore. He said I didn’t but I talked him into prescribing Thrush meds anyway (nothing to lose). With these you take 2 pills the first day and 1 each day for 6 more days. Well, I took the first 2 pills yesterday and by this morning the pain in my throat and mouth was less than 50% of what it had been. I could talk again without pain or sounding like Donald Duck. I looked at my throat with a flashlight and could see the difference. Keep in mind I was busy vomiting during this same period. Again, now what?

The day wore on and I had a scheduled visit with a Gastrointestinal doctor (same one who installed my feeding tube) and I told him my tale of woe. He really didn’t have much to add to my “cure” except to tell me it was ok to have beer for calories and the fact that it might increase my appetite. He said I needed to gain my weight back. Well duh!!!! And if the vomiting continued I could have a blockage (based on the busy non-constipational activities that were also going on this morning, I doubt I have a blockage). This appointment was in the late afternoon and by that time I was feeling a bit better nausea-wise and was showing off my lack of a sore throat by drinking water without grimacing.

Tonight I ate Matzoh Ball soup (my wife makes it great) and ate it the normal way. Then I also had a can of Boost by mouth which makes today the most food I’ve consumed by mouth since Easter Sunday (my last real meal). My throat tolerated it just fine and my stomach has not returned to its previous behavior.

What to learn from all this……..well…..I’m glad I had Thrush early in my treatment so I could recognize the symptoms because 2 separate RadDocs 5 days apart said I didn’t have it ! Maybe I don’t and it was an amazing coincidence that my throat improved remarkably at the exact same time I started taking meds for something I supposedly didn’t have. And maybe I’ll wake up in the morning and my throat will again be on fire. We’ll see.

Tomorrow morning I’m going to try to eat oatmeal and see how it goes. Then it’s mashed potatoes and ground up veggies and other real food. I’m also not going to use the feeding pump tonight; I’ll wake up for pain meds and “eat” something then. Tomorrow is another day and I’ll see what I’m in for next. What a miserable ride this continues to be.

July 17, 2011 - Not Ready for Prime Time

July 17, 2011 – Not Ready for Prime Time

I don’t think I’ll try to socialize again until my health is better than it is now. I visited with some good friends the past few days and I just couldn’t get into the party atmosphere since I can’t eat, drink or even speak very well. Add to that a very low energy level. I’d rather be alone. Everyone is nice and supportive but I like feeling equal rather than like the sick friend. Maybe later.

I was hoping by now that this blog would be a chronological account of my recovery. Instead it feels like I’m documenting a trip to hell (with no return flight). Pain and digestion miseries continue. I’m now using a pump to deliver 3 cans of IsoSource into me as I sleep. It delivers at a rate of 2 1/3 ounces per hour (about the size of a few good gulps of water). I’m hooked up to it for about 9 hours. I could do 4 cans but then I’d be tethered to this thing for over 12 hours. The rest of the day I can try to consume another 3 cans in order to quit losing weight. So far today is the best day with 5 ½ cans. My stomach continues to feel “sick” and slow to digest so that’s the problem. Sleeping with this thing is working out (2 nights so far) although I have to limit my movements and sleep positions.

My mouth is really sore including my tongue and cheeks. It feels like I have Thrush; I had it early in treatment. My mouth is slimy, little bumps are forming on my cheeks again and I have more pain in more places including farther forward on my tongue. Last week’s doc visit didn’t produce that diagnosis so I have to try to do some serious convincing. It was a 6 day anti-biotic regimen last time. I want to try it again. I need something to show progress.

July 14, 2011 - I'm Malnourished. Who Knew?

July 14, 2011 - I'm Malnourished. Who Knew?

I met with a different doctor at my Radiation Oncology practice because I was feeling like I needed to check out my throat since it's not getting better. Turns out I still don't show any signs of cancer but my thoat is NOT healing as fast as it should. Why? Well, I'm malnourished (lost a couple more pounds recently). I referred to my "catch 22" a few postings ago and that's exactly what is happening. Now I'll be seeing a gastro doc and a nutritionist to try to stop the weight loss and get some calories in me so I can heal. What a mess.

Emotions:  I continue to struggle. I'm emotionally drained and the very essence of me has been ripped out of me. I don't feel like the same person anymore. Yesterday I told my wife that I feel like a plant. That's what I feel like.

July 10, 2011 - Trying to Find Good Things

July 10, 2011 – Trying to Find Good Things

I’ll try not to whine much today even though I’ve had no improvement all week.

Things that have NOT been a problem for me:

1.      Radiation burns on my neck:  I did have some during treatment but they were mostly treatable with cream and I’ve healed up nicely. My neck, if anything, looks better than it used to. I know I’m still sensitive to the sun and I’ll take care of that – if I ever get back out in the sun.

2.      Constipation – Even though just about every treatment and every medication “can cause constipation” I had no issues there (oh wait, I shouldn’t say that, there is still time). Milk of Magnesia seems to work for me. End of story there.

Things that HAVE improved:  Mucusitis. I’m producing much less of it now but it’s not 100% gone. I do have a dry mouth but that’s going to be life-long from what I was told early on so I can deal with that.

Having said all that, I’m coming to grips with my new life as a stay-at-home sick slug. I imagine I’ve lost more weight with my appetite issues so this is my “new normal.” I was told I’d have to adapt to the “new normal” so I’ll give it a try. My “new normal” is to sleep a lot, eat what I can when I can and read and watch TV when I have the energy for any of it. I’m throwing in the towel on golf and music for the rest of the year since I can’t be sure I’ll ever be able to handle either again. I’ll wait for the promised improvement in health and energy before trying that again. For the most part, I feel like I could fall asleep at any time. So I’ll go now and  slide a bit of IsoSource into my sour stomach and then go nap. Life is grand.

July 7, 2011 – At Least the Hiccups Went Away

July 7, 2011 – At Least the Hiccups Went Away

That’s about all the good I can speak of today. I cut down my pain pills figuring they were a contributing factor for hiccups (so I hurt more) and only once did I take Thorazine. But hiccups – very disruptive and exhausting - are a royal pain so I’m glad they went away – for now I suppose.  A cancer survivor I communicate with said he had hiccups for 30 straight hours once. That was during chemo. I guess I shouldn’t complain.

My stomach continues to rebel keeping me from eating enough food to keep me from losing weight. It’s not so much nausea as a feeling of indigestion and fullness beyond reason considering how little I’m taking in. I’m not hungry like I was a week or so ago and any hunger pain also feels like very mild nausea. That’ll make you want to eat!! I’m back on IsoSource instead of my Boost diet so I alternate them to some extent. That may have helped with the hiccup problem too.

I refuse to weigh myself anymore since I don’t really want to know. I still take pain pills by mouth but regular food intake is still very minimal due to throat pain. My energy level is lower than last week (probably malnutrition) so golf went to the back burner again. I don’t do much except read, watch TV, sleep and feel lousy. This is not a lifestyle I would endorse.

As I’ve said many times:  This just sucks. I’m told I still have many months of this to go. It’s a new meaning of the phrase “life sentence.”

July 4, 2011 – Hiccups??!! Are You Kidding Me?????

July 4, 2011 – Hiccups??!! Are You Kidding Me?????

I noticed my stomach hasn’t felt quite as good the past few days with no nausea but just some general discomfort. Food hasn’t gone down (tube or otherwise) quite as easily but I was still getting it done. A couple days ago I had a bout of hiccups that lasted 15 or 20 minutes. They were sort of rapid-fire hiccups and I didn’t think much of it since everyone gets hiccups and they did go away. I had another event yesterday and they lasted a bit longer but still went away. Today I still had my stomach discomfort with more difficulty getting food down and still feeling lousy and then another bout of hiccups that lasted maybe 30 to 45 minutes. They went away again. An hour or so later they started again this time lasting over 2 hours. I called the RadDoc about an hour into it and told the doctor on call of my miseries and he said they do have to deal with hiccups sometimes. He also prescribed Thorazine, a known anti-psychotic drug which apparently also works on chronic hiccups. Unfortunately by the time I went to the drugstore it was closed for the holiday so I won’t get a chance to find out what this drug is going to do to me.

I’m very bummed out about this development. I just get somewhat comfortable with my level of pain and my slow progress toward recovery (at least I was maintaining food intake and my weight stabilized) and now this. I researched hiccups and oral cancer and my chemo treatment is sometimes implicated in hiccups but it’s been 6 weeks since I had any chemo so that shouldn’t be the reason. I have a hunch nobody will know why and I’ll be treating something with an unknown cause and a “who knows?” cure.

This disease and recovery just won’t let me go. This is not a good day for me.

July 1, 2011 - Compromises and Tradeoffs

July 1, 2011 – Compromises; Tradeoffs

The throat pain just became too much to bear so I gave in and started to take more pain meds. More pain meds means less pain but also less energy, poorer digestion, and general malaise. Pain pills are not perfect and to take enough to get rid of all pain means you’re a zombie. Compromises and tradeoffs.

Besides that the week wasn’t too bad. I played golf a couple more times and Joanne and I might tomorrow again if I can stay awake. I also did some yard work but nothing too strenuous and heavy. With the weight loss I just have little strength to do much besides some edging and raking. At least I’m doing something. I thought of going to the gym but without enough calories how can I expect to rebuild muscle? So I do what I can do.

Debbie, my main medical contact, had me look at my throat today with a mirror and flashlight. It is NOT a pretty sight. I don’t know why I didn’t look before but my throat is swollen, red and white, and just raw looking; no wonder it hurts so much. I’m told it’s healing. Ok, if you say so.

I’ve been eating at least one can of sludge per day through my throat and that’s after 3 pain pills and some lidocaine to numb my throat a little bit. It’s not a pleasant experience. I’m told I need to do this to keep my swallowing reflex from atrophying. I guess so but I’m able to swallow water so I’ll have to take their word for it. My thoughts are that it would be better to just do minimal swallowing (water) until my throat (which is allegedly healing) heals enough to it wouldn’t hurt so much. I hope Doctors know best.

As I wrap this up it’s obvious that my “healing” throat is dominating my life right now and it’s coming along on schedule (which means very slowly). Today is the 5^th full week after radiation treatment was completed. Feels like months. I was told it will be 3 to 6 months after treatment before I’m relatively ok. That’s a long time. I have a long way to go.