This Could Be The Last Time

I was thinking the past few days that I've not posted here for a long time--turns out it's been more than 3 months.  The reason for that is simple--there have been no new developments to report, and I've settled into the rest of my (hopefully long) life as a cancer survivor.  It is what it is, and I've come to accept the limitations that have come from the side effects of my chemo and radiation treatments (you remember them--The gifts that keep on giving).

While I get reminded several times a day of what those treatments have done to my body, the limitations they bring are now simply regular parts of my everyday life.

I wake up every day with a dry mouth

I can't use my left shoulder to reach for my water glass each morning. (Duh--use the right one!)

I can't put on a pullover shirt without a piercing pain in that shoulder.

I lose my balance ever so slightly at times.

Every decision at meal time starts with "What can I eat safely?", not "What would I like to eat?" (God damn, I'm tired of processed yogurt)

I have to always be carrying a paper towel in my pocket to catch 'leaks' from my lower lip.

I can't join in conversations with more than one other person.

I talk with a limp.

There's others, but you get the picture.  The bottom line is that I've accepted (didn't say "like") these limitations as the price of survival, and have found coping or avoidance strategies for all of them.  If I get taken by surprise by one of them, or caught unprepared, that's on me now--and I do get pissed when it happens.

So, I am going to take the biggest revenge possible on the Prairie Dogs, by kicking them and the gifts that keep on giving to the curb of my life.  Another way to do that is to release Team Mike back to your own lives, after a heartfelt "Thank you" for all you've done for me and Terry these past nine years.  Part of that release for all of us is to post nothing more to this blog.  It has more than served its purpose in keeping you informed, Terry supported, and me alive all of this time. So, Harv, no need to check here every morning, once you've seen how your stocks did the day before.

I have a secondary motive for stopping the blog. I've procrastinated for a long to start a book on my two journeys in Cancer World--one as a patient, the other as a survivor.   The book will be largely based on my entries over the years, and I had it in my mind that there was still one more chapter to add.  But, life as I now know it is the last chapter in the book, and will be called "It Sure Beats The Alternative." So maybe by ending the blog, it can free me up to start the book.  Those journeys are over and I've come home to the rest of my life with what they have left me and taught me, so now I can write about them more clearly.

Thanks for the Good Vibes.

Mike

Updates on Steve and Jimmy

Yesterday, after posting that I had not heard anything about Steve or Jimmy, just a few hours later I got updates on both.

Jimmy started his chemotherapy last week--no word on what his treatments entail.  So, that part of the battle begins for him--please send Team Mike Good Vibes his way.

I got a very upbeat email from Steve.  He made the decision a while back to stop eating solid foods, and use only a PEG tube for his nutritional needs.  He says that it makes his life a lot simpler, and that he's gained several pounds back due to the ability to meet his caloric needs more regularly.

From time to time, when I can't look at another cup of yogurt or drink another Boost when I struggle to eat solid foods, I have contemplated the same decision that Steve made.  My food options at home are limited, and much more so at restaurants.  Just yesterday I ordered grilled fish, which should have been easy to eat, but it came out overdone, dry and not edible for me.

When I struggle over a string of days to eat enough food safely, I can get a bit depressed, and then give thought to going down the same path as Steve.  For now I have not felt the need to take that step, but I can understand why Steve and others in our boat have done it.  I have lost the ability to eat almost all of my favorite foods, and have accepted that.  The tipping point will be when I can no longer eat any solid food safely, or can't get enough healthy calories into my body.  For now I'm OK that way, but know that it might not stay that way forever.

mike

Life's a Beach...

There has been little to update since my last posting--this one is mostly on the Cancer Revenge side of life.  Terry retired at the end of September and two days later we started two weeks at our favorite beach--Cape San Blas, FL.  We still have two more days here, assuming my liver holds out that long.  We were joined for a few days by my sister Marie, Terry's brother Damon, and his wife Aleisa.  They arrived just in time to watch the fringes of Hurricane Nate hit the Cape hard one night.  It undercut many of the dune walk-overs and steps to the beach.  But, it actually uncovered a set of stairs that had been buried for several years...Nate taketh, and Nate giveth.

We met a couple from TN who arrived for the second week.  We learned that the husband, Michael, was diagnosed with testicular cancer the day after the eclipse, operated on the very next day, and recently had his first round of chemo.  He said his type of cancer has a very high survival rate, 95%+, but his chemo treatments are at very high levels, so he's expecting a lot of short term side effects.  I noticed his recently-shaved head when they arrived, and thought "maybe it's because..." then, sure enough, even at the beach, the Prairie Dogs hunt me down and get into my life in some way.

Speaking of the eclipse, Terry's annual entry in the ATL Botanical Garden Scarecrow contest won 1st Place!  Her theme was "Total CROW-lipse of the Sun--Got Moon?"  I'll add some photos to this when we get home.

I've not heard any updates on my list of usual suspects: Steve, Jimmy, or Kent, so just hoping they are still doing well.

The only update on me is that the recent lower lip injection is working, but not 100%.  I "leak" less, but it's still a problem.  And, the injections are only temporary, so will be back to my normal leaking levels in a month or two.  After that I'll consult with my docs and see what might come next.

Mike

Good Vibes for Jimmy, Update on Kent, my current situation

It's been a while since my last post--most of that indicative that things in Cancer World have been pretty stable in the last month or so.  There have been some recent developments for me and some others, so here they are.

I got a call two days ago from a friend of ours, about a mutual friend Jimmy Ishee.  Terry and I have known Jimmy for a long time through one of our professional organizations.  The news on Jimmy is that he has an "aggressive" case of cancer under his jaw--similar to my own.  His disease was far enough along that they recommended immediate surgery, bypassing chemo and radiation, at least for now.  In most cases, chemo and radiation will be prescribed once the surgery trauma is over.  I don't have any more details, but please send him and his wife Carolyn as many Team Mike Good Vibes as you can generate.  There's been a lull in those requests for a while, so you should be rested enough to crank out a bunch for them.

I mentioned a while back that the father of another friend had been diagnosed with esophageal cancer and was undergoing chemo and radiation.  The news on Kent is not good.  On one of his follow up scans they discovered that his cancer had metastasized to his stomach and was quite advanced.  Kent has chosen to forgo any more treatments, so he can live the rest of his life without the pain and discomfort of chemo and radiation.  His daughter, our friend Christi, has been down to Florida to see Kent as often as she can.  We know that Christi is suffering a lot, but her wishes are that people around her carry on and talk about other things with her.  We really don't know anything more than that, but please add some of those Good Vibes to Kent as well.  I never met him, but he sounds like a wonderful man and father from those who know him.

As for me, I have been trying to address the problems that come with my weak and irregular lower left lip.  It looks like the last surgery hasn't helped that, and it's probably even worse than before.  I can't purse my lips at all--even when I try really hard, I can't get a full seal with my upper and lower lips.  So, I leak saliva a lot--like I'm doing now while looking down at the keyboard to write this.  It also happens when I bend over to tie my shoes, read the newspaper, and well--you get the picture.  Dr. Roser referred me to someone in Emory's Aesthetics Center (aka Cosmetic Surgery shop) and we met with her last week.  Seems like I have some options, but the kicker is that none of them can be permanent.  There is not enough remaining tissue behind my lower lip to safely graft in more skin.  So, my choices are among three types of injections: something she just called "fluid" (Liquid Nails, I think), fat from my butt area, or botox.  The drawback to all three kinds is that my body will gradually break them down and the area will shrink again--calling for additional injections, maybe as often as 4-6 months apart.  The butt fat option is the longest lasting of the three but also has the added drawback of needing a full operating room for the procedure, and longer healing time.

I am leaning towards the Liquid Nails option, and will probably get my first injection this coming week.  That will at least let me experience a period of no leaking so I can see what that feels like and decide if the fat transplant option might be worth it.  Once again that would mean using my body as spare parts, with parts of my leg, arm (hair included), and butt inside my mouth.

Let the jokes commence...

Mike

Another Cancer Revenge Event, and Some Amateur Actuarial Science

This one was not there when I made my list-in-progress a few years ago, but once I thought about it, it is a significant addition to that list for me, but maybe not for Americans who pay taxes (unlike you-know-who at 1600 Pennsylvania Avenue).

This past Monday I applied for Medicare.  I will start to collect that benefit in October, when I turn 65.

It is significant because I'll have been around for 8+ years as a cancer survivor in October, which is the ultimate revenge on the Prairie Dogs and their offspring--chemotherapy and radiation treatments.  I certainly did not get to this point unscathed, but I'm alive and kicking, which always beats the alternative.

Unless you are a contributing member of Blue Cross/Blue Shield of Georgia and are not on Medicare yourself, my shift from BC/BS to Medicare is not such good news, because come October, guess who'll be paying my medical bills?  You, as an American taxpayer.

To put that into perspective, as part of the research for my book I've been tallying up just how much BC/BS has paid for my medical expenses.  Just in the last two and a half years they've paid almost $400,000 in claims for me.  That does not include the years of my treatments, or the jaw resection in 2014.  BC/BS has agreed to send me the list of all claims paid leading up to and since my journeys in Cancer World.  I should have that soon and will update this post when I know the medical tab since summer of 2008, when the first symptoms started.  I'm guessing something North of $2 Million.

So, send some extra good vibes my way on a regular basis so your Medicare taxes don't see a Mikey-bump in the coming years.  I'd say something about how the Republicans' and Trump's plans might affect that, but I have no clue on how their Repeal-and-Replace fiasco is going to turn out.  By all indications, neither do they.

Terry had her own age-related milestone this week.  She applied for Social Security to start in October, when she'll be fully retired once and for all.  Also not good news for the American taxpayer--her grandmother lived to 99, and her mother is 87 and still going strong.  So, whatever part of longevity comes from genes predicts many years of SS benefits for Terry--well outdistancing the amount she will have paid into the system.  Guess who gets to pay for that?  The millenials. 

I love it.

Live long and prosper.

mike

Updates on Kent and Steve

My friend Christi told me a few days ago that her father is tolerating the chemo + radiation treatments well. He is past the midpoint, which is when things can tend to bottom out, so hopefully he can see a light at the end of this tunnel.  He has avoided the need for a feeding tube, which is big victory for him.  While some try to avoid having a tube, others like me welcomed it because it took away the stress of having to eat food that a) I couldn't taste, b) I didn't like, and c) had extreme difficultly swallowing.    Please keep the Good Vibes coming for Kent, as tolerance can change quickly--and he'll still have a long recovery even if things keep going well. Christi told him about my last post and that Team Mike was behind them--they were both appreciative.

After a long time, I heard from Steve Nau last week.  He is recovering from his surgery, trying to cope with the reality of having a big chunk of his tongue gone.  He definitely needed a feeding tube because his tongue can't move food around in his mouth well enough to chew and swallow it.  But, he is in good spirits, looking forward to retiring soon and spending more time with his grand daughter.  What got my attention most was the way he has prioritized things in his life in a way that keeps him very upbeat and looking ahead at what he can do, not being dragged down by what he can't do after his two bouts with cancer and their treatments.  I told him he was my hero, because he is weathering through what would be my own personal nightmare--having to deal with recurring cancer, its treatments, and the after effects of it all.

I was strong my one time around (knock on wood), but not sure I have enough left in the tank to take on another battle with the Prairie Dogs.  Let's hope it never comes to that--so keep sending the Good Vibes my way.

By the way, it looks like my last surgery was not successful.  I am still not able to control the 'leaking' of saliva from my mouth unless I conscientiously purse my lips together.  So, when I bend over to tie my shoes, or work in the garden, etc., saliva comes out unless I think through it first.  The problem is that I don't have the nerves in my mouth anymore that detect saliva and trigger an automatic swallowing reflex.  Normally a person reflexively swallows several hundred times a day--I can't do that without thinking about it first. 

Bottom line--time to get with Dr. Roser and see if I have any options left, short of devising some kind of drool-catcher to hang under my lower lip.  And as I think of that, it ain't gonna happen.  I'll just get a lot more dark shirts to wear.

Mike

Good Vibes Needed for Kent

A couple weeks ago we heard that the father of a good friend of ours was diagnosed with esophageal cancer.  Our friend's name is Christi and her father's name is Kent.  I had a conversation with Christi yesterday and she updated me on her dad.  Kent's cancer is Stage 3--no spread to other organs, but a good-sized tumor that apparently grew fast.

As for most head/neck cancers, Kent had three treatment options--surgery, chemo, and radiation.  While surgery was a strong possibility, it would have left him with essentially no esophagus--just a direct 'tunnel' from his mouth to his stomach.  So, he chose chemo + rads and is about 2/3 through those treatment cycles.

That means he's in the toughest stretch for pain, discomfort, poor appetite, low blood cell counts, fatigue, etc.   So far, no sign of needing a feeding tube, so that's a plus.

So please send Kent your best Team Mike Good Vibes in the next few weeks, so he can get over this huge hump and back to doing things that the typical 81-year old does--like running, hiking, and cross country skiing.

Mike