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

Good News, Bad News x2

Well, the good news is that my esophagus does not have to stretched again.  The double-bad news is that the problem starts before food reaches my esophagus, and there is no way to fix it.  Oh yeah, and it will keep getting gradually worse over time.  That might be 3x bad news, but who's counting anymore?

Without going into a throat anatomy lesson, there are some small structures just past my tongue that were damaged by the radiation, and cannot heal or be corrected with surgery.  Even well before food gets to my esophagus the damaged mechanisms limit what can go past them, and cause a backup with all but the smallest of food particles and liquids.

The PA who did the test put it into perspective:  this is a bummer for me, but she sees a lot of cancer survivors with many more eating limitations than mine, and many who can take food only through a tube--for the rest of their lives.

Sonofabitch--just when I wanted a good reason to wallow in my cheeseburger-less reality, she tells me it could be a lot worse, given the type of cancer I had and how it was treated.

So, I actually left the test feeling good--what's wrong with that picture?  What I need to do now is figure out how to cope with this for the rest of my life.  For a long time I thought it might get better some day, but that hope is now gone.  Time to figure out a way forward that will keep me nourished and looking forward to meals.  To be honest, that's not the case right now.  If eating was not an absolute necessity, I could happily not eat ever again--it's just too much of a hassle, with very limited options, and a test of will to get enough food into my mouth and down to my stomach three times a day (I've almost stopped snacking completely--except for yogurt).

mike

The "Gifts That Keep On Giving" Keep on Giving

Over the past year or so, my white blood cell count has hovered around the lowest level possible before it needs to be treated.  My GP referred me to one of Emory's best hematologists, who specializes in symptoms related to chemotherapy.  His opinion is that my immune system has been compromised due to the...chemo 8 years ago, and the loss of marrow from bones removed during the two surgeries.  So, if he's right, I'll stay at risk for more things like the mystery infection I had in March.

Over the past few months, I've had increased problems with swallowing food.  I have a stricture in my esophagus, caused by...radiation treatments 8 years ago.  It reduces the elasticity of my esophagus, which limits the size of food particles I can swallow. My range of selection has not decreased, but what I can eat has become even more of a struggle--to the point that I just get tired from the effort at many meals, quit trying, and default to a Boost or yogurt to get the calories I need.  Ice cream with brownies, and Key Lime pie also do that same trick.

So, I have scheduled a Barium swallow test on Monday, with the expectation that I'll need another esophageal dilation--my fourth or fifth, I think.  That's IF they will let me have one more.  There is a limit to the number of these that one's esophagus can recover from, so there is a chance they won't be able to do it again on me.

We'll know more after the appointment on Monday, so stay tuned.

Mike

It Still Ain't Over

First things first.  My friend Steve has had some complications from his tongue surgery and was still in the hospital a few days ago.  Please send him some Good Vibes--this trip into the Vortex is going to be a lot longer and harder than he bargained for.

After being off to a good start with my healing after march 1, things went south in a hurry last week.  I started to feel bad on Thursday--chills and a fever around 102.  The fever spiked at 104.5 on Friday, so we went to an urgent care facility.  The doctor there said he wasn't sure, but thought it was pneumonia--without taking a chest X-ray, by the way.  He gave me some antibiotics.  We went home and he went to his St. Paddy's Day party.

No change the next two days, so off we went on Sunday to the Emory ER.  After 10 very long hours there, I was admitted to Club Emory and stayed there for two more days.  After a bunch of tests and a shitload of IV antibiotics, I felt better on Tuesday, so they discharged me, with an official diagnosis of "Dunno."  They do know it's an infection, probably from the surgery--but beyond that, they are stumped.

My temp has stabilized and my very heavy night sweats are almost entirely gone.  I have some chest congestion and a little cough, so now it presents as a cold--like a lot of people around me have these days.   So, go to Club Emory with an infection, come out with a cold--sounds about right.

While we were waiting in the line of cars at the Emory ER, Terry prognosticated that this was an "anomaly"--they would find nothing, or it would be something weird.  So far she is right.  I call it another case of SFL.

So, more tests coming up to see if they can isolate whatever is doing this.  And, another week+ of my life spent recovering from cancer 8 years ago.

This shit never ends.

mike

This Could Be The Last Time

I am at home resting after this morning's procedure at Emory Midtown Hospital.  They had my favorite OR table reserved and ready for me, right on schedule.  But before they rolled me to my table, they put the latest in "OR Party Hat" fashion on me:

Some places require a coat and tie to be seated, mine requires this.

The procedure lasted about two hours and included the removal of the re-grown hair in my mouth "Just take a little off the bottom gum line, please," and a skin graft to patch the small incision they made to give my lower lip more mobility and function.

I can already see and feel the change (for the better) in my lip functioning, with more to come as the swelling goes down over the next week or so.

While that area heals I'll be on a diet of total diet of soft and liquid foods.  I go back in 10-12 days for the removal of the splint they inserted to keep the area stable.

If all goes well, this will be the end of my surgical history for all of the side effects that started in 2009.  But, as the Atlanta Falcons learned so painfully in the Super Bowl, it  ain't over until it's over, so, the song goes:

This could be the last time,
This could be the last time,
Maybe be the last time,
...I don't know


Mike

Update on Steve, and Good Vibes for Me

I got some clarification on Steve's situation.  He did not have surgery last week--that was an appointment for an MRI.  But, it did confirm the size and location of his new tumor, and from that he's scheduled for surgery on March 1.  They will take some skin and other tissue from from one of his arms (called a free flap) to patch the hole when the tumor is extracted.  He'll likely have several weeks of rehab and therapy to get his speech back to some semblance of normal.

So, please keep building up those Good Vibes for him on March 1, and while you're at it, add some for me.  On that same day I'm having an outpatient procedure to improve the functionality of my lower lip, so my lips will purse together without having to force it.  The current inability keeps me from using a straw (no suction) and makes saliva drip out when I tilt my head down, and forget to close my lips together.  Neither are pretty to watch, but there you have it.

If this little procedure is successful, it could mark the end of my surgical needs for good.  I will have all of the functionality I can ever expect and can then get on with living with those limitations forever.

As always, the key word is "could."  Even though this could be the end of my surgical history, there are never any guarantees for the citizens of Cancer World.

mike

Fear and Loathing at Cafe Lily, and Good Vibes needed for Steve Nau

Last Thursday was Terry's birthday and she chose for us to eat at Cafe Lily, one of our favorite restaurants.  We requested and got our favorite table, so it started out as a great evening out.  Terry ordered the pincintos, a roasted lamb dish served with very tasty Japanese sweet potatoes.  After a lot of deliberation I ordered an asparagus risotto, topped with scallops.  It seemed to pass all tests for chewability, swallowability, and yumminess (none of which are real words, by the way).  Our plates arrived, we toasted to her birthday again, and dug in.  About 10 minutes later I felt something being lodged in the lower end of my esophagus, but I dismissed it--things like that happen a lot and almost always work their way down into my stomach with some patience and lots of water.

Key word...almost.

This one stayed stuck and started to irritate my esophagus.  It did not block my breathing so that was not a threat.  But, it did cause us to cut short our dinner, miss a great chocolate dessert served there, and to head home--with the clock ticking on our one-hour rule to head to the Emergency Room.  Right at one hour, we decided to head to the ER, so I went upstairs to change into some comfortable clothes for what could be a long night.  As usual, Terry was packing stuff to help her pass the time there.  I gave it one last try, and with that whatever it was moved a bit, and then slid down into my stomach.  Situation over.  I never did see it, but assume it was a piece of scallop that had been stuck.

Although it ended well, if after an hour, this brought back memories of so many other times when we ended up in the ER for the same reason and I had to get some direct medical attention to get it resolved.  And, it added to the long list of events that remind me that I'll always be a cancer patient in some form or another.  I now take for granted waking up with a scratchy dry tongue every day, and having to think carefully about every bit of food I put in my mouth--just part of the price for being a cancer survivor.  bit, every once in a while like the incident at Cafe Lily I get reminded that I can't take any of that for granted and need to be constantly alert to handle situations like those.

Contributing to that fear and loathing, I got a bit of news recently that really scared and saddened me at the same time.  As a back story, my oncologist once told me that the chances of patients like me getting a recurrence of the original cancer is "little to none" due to the radiation in that area.  I have been mentoring a friend from California for a few years on his own progression through severe ORN symptoms, and he recently learned that he now has a new primary tumor in his original cancer's area.  His name is Steve Nau, and says that his oncologist is not calling it a recurrence, but to me that's just semantics, and either way it is caused by Shitty Fucking Luck.  And, because he can have no more radiation in that area, his only option now is surgery to remove part of his tongue.  That will happen tomorrow (Weds, 2/15), so please give him our best Team Mike Good Vibes for a successful procedure, a quick recovery, and manageable limitations going forward.  The reality is that he'll have some loss of function with his tongue and jaw, so the best outcome is that those are negligible compared to his current limitations.

Besides feeling bad for Steve, any recurrence, and especially one is the same area, is my own worst nightmare after 8 years in Cancer World.  I am not sure I could handle the physical and emotional stress of another round of treatments, side effects, and further deterioration is quality of life--for me and for Terry.  It took every ounce of fight for us to make it through one, long round.  To have to gear up for another battle would cause me to think hard between that and a full surrender.  I hope I never have to make that choice.

But for now, my attention and thoughts are with Steve.

mike
 

Fear and Loathing in Building C

Last week I had an appointment with a hematologist after some low platelet counts--turns out, nothing to worry about.  The appointment was in Building C of the Emory Clinic, which houses their Winship Cancer Institute. (Smart folks at Emory, building "C" for Cancer). Terry and I had to drive separately, and planned to meet at the Hematology Department inside. I wound my way from parking to Building C though a maze of walkways and tunnels and eventually found myself at the entrance to C and thinking that I've not been in that building before.  All of my cancer treatments and direct follow up appointments were at Piedmont Hospital. I did wonder how my appointment with a hematologist was in the same building as the Cancer Institute but never really gave it any more thought.

As I turned into what I thought was the correct hallway, I got a huge rush of fear and bad memories when I found myself in the waiting room of the Infusion Suite, and saw about 50 people in there.  The IS at Piedmont is where I went for chemotherapy and the occasional fluid top-off.  For a brief moment I felt as if I was waiting for an infusion myself, and remembered the horrible discomfort and sickness those treatments brought me.

Then I heard, "Mike...Mike, this way" and turned to see Terry pointing me towards the  Hematology Department, right behind me.  It took me another moment to collect my thoughts, but learned I had only missed the last turn and was very close to where I needed to be for my appointment.

Every once it a great while now, something will trigger a memory from my treatment period and early post-cancer period that sends a chill up my spine.  One of the reasons I changed to the Emory system was to avoid going back to Piedmont hospital and walking those hallways again, and to avoid any memory triggers of their Infusion Suite.  So, I could run but not hide from them, as it turned out.

Other memories get triggered from time to time, and some of those from reading entries in this blog.  That is going to difficult as I re-read all of them again as I write the book I mentioned a while back.  That has now become my next large post-retirement project, one that will take several months to finish.  In a strange way, I actually hope that the book writing process and past blog entries does work to trigger some memories from my year of treatments and seven years of a hard-fought survival--that will make the book's stories easier for me to write and more vivid for its readers.

In the meantime I will pay better attention to the hallway signs in Building C and elsewhere around the Emory Hospital.