Long Time No Entries, No Excuse, Just Lazy. Update…

Been quite a while since I have added a post to the blog. I guess like many others, I just got lazy. Still in the “Cancer Free zone” after round 2 and the radical neck dissection plus chemo. However, I still feel worse than I did when I had the full blown cancer. I know it sounds weird to most people but several other “cancer survivors” have told me they know “EXACTLY WHAT I MEAN”.

My wife and I have to fish a 100′ drain snake down our basement drain every two years or so due to a tree root issue between the house and sewer system and we have it down to an art for the most part. She does a lot of it and I help where I can like lining it up as we power push it deeper. Unfortunately, I chose to use some cheaper nitrile coated gloves instead of buying new thick rubber ones. The result was very painfully educational. the steel cable grabbed my glove and twisted my hand and arm like a corkscrew before we could react to shut it down. It then took several minutes to free my hand, one finger at a time from the wound up mess I was stuck in.

All my fingers still work but they hurt a lot. I guess I pulled, tore or otherwise damaged all the muscles, tendons and ligaments in my hand. Sprained my wrist and pulled the muscle from my pinky to my elbow. I have been using ice, compression and Ibuprofen – exactly what an ER would do without spending $200 + for the advice.

As for the post cancer side/after effects, I still have the horrible lower back issues that the pain clinic has been dealing with for 5+ years. Due to the radical neck dissection removing my right jugular vein, my blood flow is very slow so when I stand up or just rise from a bent down or stooped position, I get very dizzy, very fast and still stumble/fall often. Most are not “major falls” but they are falls none the less and still hurt.  The Tinnitus is getting worse but between background noise I leave on at night and the sounds from my Bi-Pap machine (no longer C-Pap) I can get sleep. I still sleep several hours a day most days for no apparent reason. Tests done with no results. Also since the Radical Neck Dissection, I have horrific Charley horses in my neck and throat every time I eat and sporadically thru the day. My ENT says he can give me several Botox injections in the neck to slow them down but I run the risk of being “a human bobble head” for a time with all the bad luck I have had so far. I still choke at least once each meal. I keep plenty of liquid nearby to help push food thru when needed. Still getting used to full dentures too, after a year and a half or so. Long term memory is fine but short term is still giving me problems. Getting a little worse every year. Still have the loss of much feeling and range of motion from my right ear to my right shoulder since the radical. Keeping up my physical therapy mostly swimming at the YMCA helps keep it in check. I do my walking mostly using a cane or a wheeled walker with a seat where I can sit and rest when needed but I did request and get a manual wheelchair for when we go shopping for the day and I know I will be stooping a lot. I am way better off sitting to begin with than falling while trying to get in the seat of my walker fast enough.

There is certainly more going on but as usual these days, I cannot remember everything right off the bat. I am still in good spirits (considering) and pressing on thru the days doing what I can when I can. I have a few more medical things I need to start addressing as I age. I do not know if they are age related (but probably are) or more side/after effects from the 2 cancers. I need to see a urologist about my prostate. I keep up with the cancer blood work as I have since I was 40 because every male in my family has had prostate cancer around age 50 – 65, I know I am so far cancer free but that does not mean my prostate is not the size of a grapefruit. I am having a lot of problems in that respect. I also have swelling in my shins and very poor wound healing there (with zero signs of diabetes).

Anyway, that’s the latest (as best as I can remember at this moment). I will try to update the blog more often.

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No Words Can Describe It.

I can not think of any words in the English language that can adequately express how miserable I feel right now. It is a weirdly intertwined cross between sheer pain and beat down tiredness. Everything from the top of my Adams Apple to the tip of my chin and up into my tongue, cheekbones and sinuses is acting like one twisted, pulled, torn, tired and just plain worn out clump of muscle with a constant short circuit of the nerve endings. At least for the dryness, I can rinse my mouth out with dry mouth mouthwash to help for a bit. For the pain, I can take a pain killer and/or muscle relaxer and get some temporary relief but the CONSTANT FEELING OF TIREDNESS (the only way I can describe it) It is like when you are so tired you cant sleep. When it gets so bad, you toss and turn till your eyes overflow with tears and you find yourself mentally begging to fall asleep. That is how my mouth has felt 75% of the time I have been awake this weekend. Im sure it will eventually pass but for now… This really sucks.

My concentration level is at its minimum. Simple tasks seem harder, I just want to get this behind me. I am still VERY HAPPY that I was able to get it all done at once because the way I feel now may have prevented me from continuing with the other half we were going to remove in another few weeks. Those were the ones on the left side of my mouth and were the most directly exposed to the radiation treatments during my first round of cancer. I have a follow-up visit in 2 days. Hopefully, I will either find much more relief by then or the Surgeon has some type of “fix” or “advice” for me. Until then, I hope I can sleep…. A LOT…

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GUMBY DAMN-IT !

Yes it is a lame old SNL reference but it fits the situation today. I went to the oral surgeon yesterday to get all my teeth on the right side pulled and low and behold… he had time to pull ALL of my teeth. This made me very happy. One less visit, all over but the denture shopping (in a few months when I heal). Again, to save some money I opted for only Novocaine and some gas to relax me a bit (I also took a Klonopin an hour before). The assistants said they cannot believe how well I tolerate pain and that really helped it go quickly and smoothly. I had my right shin fractured at a dentists office when I was 13. The light broke off at the upper rain and fell on my leg as he was moving it to see my cavity better… So…. I am a bit nervous at the dentist (for the last 35 years or so).

All went well, most pulled ok only a few had to be cut and/or drilled out. I didn’t bleed much this time either as the radiation beat the hell out of the blood vessels in my mouth. BUT… The pain afterward was almost unbearable. I felt like going to thew ER a couple times but I powered through it. One of the problems is that my jaw can’t relax. where my teeth used to click together and that was all the further I could close my mouth, is not there now. Every time I close it past that point it is like pulling a muscle (and it friggin hurts). It is also very sore and tired from the constant “open and close” motion it wants to do by habit. This just makes it worse. As always though, time will pass and it will too. The stitches bug my tongue a bit and as if I didn’t have enough of a dry mouth problem, the gauze I have to put in my mouth when I do bleed really dries me up.

I had to cancel my consultation appointment with the back surgeon last month but I will try to get in sometime in August.

Anyway, for those keeping score. That is my latest update.

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Round 2 coming soon

Got thru the first oral surgery to get the 5 initial broken teeth out. The rest all have to go, just not an emergency yet. I go in on the 27th and will get the right side teeth all removed then the following month I will get the entire left side removed. Chewing is already difficult from the front lowers coming out so I am on soft food for now. I supplement with Boost for my vital nutrients.

Had a surgery last week to remove the chemo port from my chest. A little bit of pain thru recovery this last week but nothing unbearable.

Other than that, had to cancel my appointment with the back surgeon due to conflicting schedule but will hopefully get in next month. Our washer/dryer combo took a crap and started leaking water everywhere but it is under warranty so they will be out today to fix it. Our whole house A/C went out too and unfortunately, that is not under warranty, saving all we can to get that fixed. This has been a very bad week to be without air. We do have a small portable A/C unit we put in the living room (it has to be by a window) and two stand fans blowing air into my room. After 3 days it only got down to 76 (a far cry greater than 85 where we started though).

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The End of the Road for the Teeth – NEED HELP

Last week (3 years after radiation) I han 3 of my front bottom teeth just fall out within a half hour of each other. Well, they didn’t completely fall out, they broke off at the gums and now I have little “fish bones” sticking up thru my gums. Infection is certain ( I have been thru a couple Z-Packs in the last month to settle massive toothaches before this happened) as soon as they fell out… The toothache went away but the other pains started. Several days later, I am back on antibiotics as my pain level is thru the roof from new infection. I got to see an oral surgeon finally who is willing to work on me (knowing I had radiation before) but it will be VERY expensive and my insurance will not pay a dime.

Now… My Rant… How in the hell is it not “Medically Necessary” to have this part of my mouth fixed when if I don’t, they will become infected, go septic into my blood and KILL ME??? That is exactly what will eventually happen if I don’t get this fixed. What a fucked up insurance system.

Anyhow, the plan for now is… on April 6th, he will remove the broken off roots from my jawbone as well as 2 to 3 complete teeth (that are currently loose and already dead like the 3 that fell out) This will be done WITHOUT being put under as I cannot afford the extra cost of anesthesia. (I will be numb and get a little gas to help relax me but will be fully awake thru the whole thing) THE COST = $1,200.00. Luckily, he will take payments after a substantial down payment. The idea is… we fix these 5-6 and see if I heal ok. (there may be serious problems healing due to the radiation which is why no one so far would work on me) If there is a problem, the hospital across the street (which is covered by my medicare) has a hyperbolic chamber that I can be put in for therapy. Next… and ASAP, there are at least 5 more teeth (Most are top front) that are dead, turning black and ready to get infected themselves and start falling out the same way. Hopefully, I can pay down my bill fast enough to get him to pull these while there is still a chance of a MUCH CHEAPER “straight pull” and not “oral surgery” so to speak. I will most likely at that point see about pulling the remainder and having an inexpensive set of dentures made.

Good news… I lost 8 lbs this week alone (sticking to that liquid Boost diet really helps) I would love to get back under 300 (only 16 to go at this point) Big goal considering I had just topped 400 when I was diagnosed. (Oh to go back to that day 19 or so years ago when I was still skinny (6′ 225lbs) good looking, smoked, chewed, drank heavily partied hard…) But I gave it all up those 19 years ago. Enjoyed my career as a truck driver and 20 years later… I AM FAT WITH CANCER (twice in 3 years)… How does that happen???

Anyway, I MUST resort to asking for donations to help get this paid off quickly so I can get the rest taken care of before it too becomes an emergency (or kills me).
my paypal address is magictrucker007@yahoo.com (my name will show as Jeffrey Ashkettle) Donate any amount you wish. EVERY $5 bill helps (believe me, when I had to get donations in the beginning to pay my Cobra ins until medicare kicked in, it was the many many $5 $10 $20 donations that got me to the top after a couple of base $100’s from relatives. PLEASE send it as “Friends and Family” (or paypal takes a % for themselves.) magictrucker007@yahoo.com is also my main email if you wish to drop me a line. (and my spam filter doesn’t eat it)

If you have nothing to donate (as I know many of you don’t) Keep me in your thoughts, send positive vibes my way, pass and share my blog in your circles, maybe someone YOU know might be the one to toss me a much needed $20.

one more thing I will ask is… If you read the blog, enjoy it or not, drop me a line in the comment section so I know people are out there. I got a personal email from someone going thru this with me recently that told me how I inspired her and helped her family learn a lot about the “recovery” process (and I was about to give up due to lack of hits on the site and no comments for a long time. So PLEASE… let me know you are out there, even if you can’t donate. As always, thanks for reading my stupid life story and thanks for caring. Thanks in advance to all who donate ANY amount – It helps.

Will update after fist surgery (if I heal right or not) PEACE.

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A reminder of “Why” I blog

I started this blog a long time ago to put my story out and to get help with my COBRA insurance payments until I could afford them. After that, I stopped the donation process (although I do occasionally get a donation or two thru this). I kept up the blog in order for ME to vent and for OTHERS to understand the harsh realities of recovery. So you or your loved ones understand that it is not all rainbows and kittens after the first time the Dr says “You are in remission”. THIS IS WHERE THE HARD SHIT STARTS. I talk about problems with continence (or lack of) because it happens. I discuss higher pain levels, because they are real as well as many major side effects from chemo and radiation that MAY NEVER go away. I talk about periods of depression. It is going to happen and it is going to happen a lot. Regardless, I put it out there because I am not embarrassed to let you or your loved one know – “you are not alone”.

People try to spoon feed me “happy thoughts” all the time. “OH, you look sooo much better” or “wow, your bloodwork looks good, you are doing great”. The problem is…. I am not. I am losing weight because I can’t eat properly so I rely on liquid crap like Boost and Ensure that I can sometimes barely choke down. I do it, I need the nutrition, but the taste??? yuck. I get a hair cut and “oh, you look good like that” (I can look in the mirror and all I can see is a lopsided head with 1/4 of my neck missing and scarred – it is NOT a good look).

The blog is about “MY” truth. and hopefully helps you to better understand yours. Everybody is different, but if you do not live in the world of Rainbows and Kittens, you are not alone and you are still normal.

2015 is here

The Holidays are finally past. Got to visit with many relatives who I do not see often enough over the last couple months. Time to start a new year. As for resolutions, I made one back in my teens “to not make stupid resolutions I know I won’t keep” and it has lasted through all these years so I stick with it.

A new year, a new medicare provider. My last one wanted to jack one of my meds (a common generic) from $20 a month to $326 a month then $500+ after I hit the doughnut hole. I can buy the stuff retail for $200 if I wasn’t insured. Eff them. The new place I chose, my same pill went down to $15 a month. No copay for premium (another $50 a month savings) and the only thing that went up was my PCP from $5 to $30 a visit (which is only 3 – 4 times a year). My Dr is still working on the teeth, trying to see if there is any way to get them pulled as a medical necessity since I cannot find a dentist who will touch them due to my radiation without several hundred $$$ up front. And nobody going thru cancer recovery has that kind of cash lying around (if I did, I sure as hell wouldn’t need medicare). My last insurance co also denied the pain clinics request for a readable MRI to see if I am eligible or a candidate for lower back surgery that could potentially end my tailbone pain (or reduce it greatly). So now I must go thru all of those steps again and see where it goes.

My Tinnitus is just plain deafening at times and really drives me crazy, the constant dry mouth doesn’t help either. I spend most nights waking often to drink (for my dry throat) Pee (because I drink so damn much water and decaff iced tea) and changing the station on my radio (I use earphones and use different stations and shows to block out some of the buzz, hum and ringing in my ears). I have had to cut back on my pain meds a bit due to bathroom problems. I started keeping a pain diary on my iPad several months ago and also track my bowel movements with the app. for a while I was only pooping once a week and know that was bad. I usually go once every 3-4 days now and still pass out during it at times. My dr gave me some super prescription laxative to take and it has finally been helping, the problem is remembering to take it every day whether I need it or not (half a dose a day). I guess you can only push so many turds that are bigger than pop cans before you start to remember your medicine to prevent that buildup. 🙂

Hopefully this winter will be better than last. I got a bug or something and slept for about 3 weeks in Jan for 18+ hrs a day. Feb was pretty much 12 on 12 off for sleep and by March I guess I grabbed my bootstraps and forced myself to get active. It is really easy to get in a rut during these cold winter months.