Answers

I’m playing hooky from work for a few days this week.  Would like to tell you that I’m taking this time to devote to a series of productive and extremely manly honey-dos but, chances are and knowing me, most of that time will actually be spent committing honey don’ts or their wicked step cousins, oh-no-you-didn’ts.

Speaking of which, Elsa decided to take me for a run this morning. I guess she thought I needed it.  Didn’t sleep much last night and was feeling a bit, persnickety. Have been “dealing” with ulcers as a byproduct of previous immunotherapies as well as current keytruda regimen. It felt like I stopped by the grill in the backyard and swallowed a few hot coals on the way to bed.  Running usually helps relieve and/or remove the pain when I’m symptomatic. Waa-waa-waa.

So off we went to the Mt Herman Trailhead, which is a confusing name for the path that actually does not take you to the top of Mt Herman; rather meanders around its foothills through a dense pine forest, pond, and Monument Rock (picture). I usually do a loop that is basically uphill for the first half.

It was during the last bit of climbing that I ran into a couple of guys mountain biking.  They had stopped at the the “top” or the highest part of this particular route to catch their breath, grab some water, take in the view, or perhaps watch me, Thunder Cat, crawl his way to the top.

We struck up a conversation (they talked, I gasped) and because I’m kind of on a evangelistic tear right now I happened to mention, in reference to my breathing, “Yeah not too bad for a guy diagnosed with Stage IV terminal cancer and 98 brain tumors a few years ago…”

There’s probably – okay probably maybe certainly – an element of crow going on here.  Boasting or not, this is a story I feel the need to share these days.  Not sure I care to perform any further self examination on the subject beyond that, at the moment.

The thing is though, if I’m going to take the talk from run-of-the-mill, trail based pleasantries like ‘ha ya doin’ and ‘beautiful day isn’t it’ or even ‘that last part kind of sucked,’ to deeper topics of cancer and survival, then I better be prepared for heavier caliber conversation.

“Mind if I ask how your relationship with God is?”  One the guys asked.

My instant reaction was to think, ‘Huh? I don’t know.’ 

But that’s not really how you are supposed to respond in that situation right?  Not when you have been sober 24 years and regularly swear in a room full of your peers, “it’s only by the grace of God”; or faced with a life threatening illness find yourself alive and saying, “Thanks be to God.”

So instead, I answered the question by not answering the question, “Well, I go to church…”

The truth is, in relation to my belief, some days are better than others.  There are a lot of moments when I feel the opposite of “sure” about anything. I’m barely making it up the trail let alone feeling confident about life, God, me, you, us, them, the Cubs chances this year…

Here I can hear the gruff voices of a few old guys with the inflated spare tires around their waists (aka “boomer bellies”) and steaming Styrofoam cups of coffee in their hands.  Their talking to me in cliches, derivatives of,

“The older you get the more you realize how little you know.”

Or,

“The only thing I know is that I know only a little.”

And I relate.

Oh well, guess it could be worse.  Perhaps the fact that these statements ring true- combined with my own expanding waist line – means I’m getting older.  Older = good. (-;

PS. Elsa was not working on ulcers but she definitely succeeded in wearing herself out.

Worn out

Or maybe it was the after breakfast snack she had on the trail?

Outed on Facebook

Well, some things never change I guess.  My brother broke, I mean, got wind of this little project and he told on me, again, to my Mommy no less and to Facebook.

In my typical nerdy and some would say “controlling” way (only the jealous ones say that though), I’ve been hacking away for the last couple of weeks, keeping 98braintumors super top secret (except for like registering the public domain, adding a few posts etc).

Though I have to say it did get a bit creepy the other night when 15-20 “people” registered their “usernames” here.  I wondered if my SEO (search engine optimizations) were really that good?  Had I applied the right tags, using the right words, to my few meager posts?  Was adding my xml based site map to “The Google” so effective as to bring legions of new subscribers to my door? Er, no.

Turns out it was Boris or Sven or somebody’s web crawling software who found my site and auto-registered so that – I assume – they could start serving spam to the universe.

So, if your spam filter recently picked up email from 43bigfool1@98braintumors.com or buttaholla2020g@98braintumors.com offering “Free Russian Brides” or “The Diet Pill that Dunkin Doughnuts Doesn’t Want You to Know About…” it wasn’t me (btw the bots are no longer allowed to register and their suspect usernames have been purged).

The “truth is” I probably would still be hacking a year from now if the Gibster/my brother hadn’t ratted me out.    So thanks G, thanks a lot man, now there’s like 10 people that know about this.  Anyways, if you are here, welcome and thanks for reading.  I hope my story is of use to you.

xoxoxoxoxo

Leland

PS. I added a photo album tonight (should be on menu bar, entitled “Pics”) and, of all things, a few pictures.  So now you know I’m actually a real person, my name isn’t  43bigfool1 or buttaholla2020g and, at least for the moment, there are no Russian beauties or snake oils sold at bargain basement prices here.

Energy and Exhaustion

Grateful for Busy Weekends

Last weekend I coached two hockey games and a practice, ran 3 miles in the mountains with my dog Elsa, lifted weights, did one of Shaun T’s “Max Out 30” videos (with window shades tightly drawn in living room, chasing away images of 80’s era Jane Fondas in purple spandex and candy-cane-striped-leggings doing squats across the back of my eyelids), worked on this blog, threw the football for my two boys for a couple of hours, bounced on the trampoline with them, mowed the backyard, helped my wife in entertaining @ 25 people from our church Saturday night,  and hit our bible study Sunday (another minor miracle)…not too bad for a guy diagnosed with Stage IV melanoma and who, for most of my life, has struggled with some serious fatigue issues.

Hopefully that last paragraph is not in poor taste or comes off as arrogant or boastful.  The purpose of www.98brainturmors.com is to offer people with cancer, even a terrible prognosis like mine, hope. I’m grateful for the ability to be a part of weekends such as these. While I can’t predict what the future holds for myself or anyone else for that matter, it’s been a gift to go from a six week prognosis to three more years with friends and family!

Even before I was diagnosed with Stage IV melanoma, I struggled mightily with feeling tired.  I remember, especially after my kids were born, feeling so tired it physically hurt, despite a near constant infusion of coffee on a fast drip.  Our good buddy Scotty pretty much summarized how I felt for an eternity…um, since childhood. I wondered if it would ever end.

From http://blogs.emulex.com/lenovo/files/2014/12/scotty.jpg

Things to try if you are feeling tired

Why am I writing about this? What’s changed?  I can tell you that I got much more serious about energy, or my lack thereof, once I got sick.  I can also tell you that, at least for me, this problem was not “solved” overnight.

“Solved” is tagged in quotes because this is still something I struggle with…though, as mentioned, I feel like it has significantly improved over the last few years.  I think, in most cases, the answer to the energy/exhaustion problem will defy a headlong assault, is more complicated than just finding a single cause (at least in my case) and is not something I could wake up one morning and give myself a good Foghorn Leghorn talking to, “Boy I say-I say I do declare today you shall have more energy.”

But here are some things I did, either intentionally or by stumbling my way into them, over the course of treatment.  Again this is, as with anything on this site, not medical advice.

Get worked up

Got a complete workup of labs (blood work) done by doctor as well as medical practitioner.  Had them review the whole thing and see if there were any deficiencies.

Note that I’m not anti-doctor by any means, but I have noticed a tendency, at least with some of the doctors I have seen, to either discard or downplay vitamin and mineral deficiencies. I’m not sure if this was my lack of assertiveness in stating the problem, their busy schedule/time allotted for me (or both), or as the more paranoid among us might suggest their over-reliance on the western medical doctrine and practice…pick your poison.

I would recommend making it known if you are really struggling that you need help, that it might take more than one test or course of action, and you would hope that he/she will help you resolve this problem. Given this kind of sincere plea for assistance, they should roll up the sleeves.  If they don’t, exercise your right to find someone that will.  This is what I did. In my case, after some serious whining/asserting myself and a change in doctors, I got worked up.

Vitamin D

One of the things we found was a serious vitamin D deficiency.  This is pretty common for people in general and not just cancer patients.  BTW…this is a little curious for over baked, extra crispy melanoma suffer like myself don’t you think? 0-;

You can google for studies, anecdotal evidence, rants, and pseudo-science about the role of V-D and cancer. I’ve been taking 5,000 IU/day of Vitamin D-3 for a few years now.  I also don’t – against what many people advise – necessarily avoid the sun.  We need it for V-D as well.

I vant to check your blood

Another thing that occurred over the last few years is that I gradually became more and more anemic (had a reducing red blood cell count) and iron deficient. Here I was told it would be good to rule out internal bleeding; that sometimes bleeding lesions or tumors don’t show up on the normal C-T/PET scans.

That equated to an endoscopy or check down esophagus, stomach and small intestine as well a journey, um, through the other “end.” In both cases I was found to be free and clear – no lesions and no vampires hiding out in plumbing (seems to be a Sesame Street thing going on here now…guess that’s about right/my level).

What did happen as a result of the anemia was I started taking an iron supplement (there are various ‘blood building’ supplements at health food store) as well as B complex.

I have to say, of all the things mentioned here, the blood builder and B complex combo seems to have given me the most jump; even during that 3 o’clock – oh Lord why can’t we practice the art of the siesta in this country – hour, I rarely feel the need to crash out anymore.

Thyroid Disorders

Got my thyroid checked. This is something I believe anybody that is receiving immunotherapy should have regularly monitored. I can’t say for sure if my thyroid was always messed up (to use medical terminology), but I can tell you after a full course of yervoy, I finally had mine looked at…and it was bad, as in out of whack, as in essentially not working.

Okay, guilty as charged, I don’t have a copy of the labs. The University of Colorado app I use that has previous medical records doesn’t have it listed in there for whatever reason. Sometime in 2013 we figured out that my Tsh level had a value of like 190 where normal ranges are @.45 -4.680.

Needless to say I remember feeling a bit “put out” at the time. Just tying my shoes or, heaven forbid, hanging a towel instead of tossing on floor seemed like a major ordeal. My wife now thanks the decision to treat my thyroid accordingly and the towels generally smell better, longer as a result.

In relation to melanoma and thyroid, a particular paper written by Jacob Schor comes to mind.  Schor cites studies which appeared to show Tsh as a growth factor for melanoma. Its an interesting read, as all Dr. Schor’s writings are, in case you are interested- melanoma and thyroid.

Diet

Okay is there some cruel irony that the word “die” is embedded in diet? I could spend a lot of time writing about this but I won’t. There’s plenty of passionate debate around this subject everywhere…just know that I haven’t eaten any meat or had any processed or refined sugar (that I know of or willfully/sometimes these things are embedded in restaurant food or prepared meals) in three years. NONE nada nawching.

People often ask me, “how do you do it?” and I always say it was relatively easy.  Despite a serious, bordering on professional appreciation for The Immortal Cheeseburger and all things greasy, meaty, cheesy, salty, fatty, sugary etc.

Every time I feel the need to exercise my addiction I think about my boys, my wife, 98 brain tumors, tumors in the lungs, stomach, liver …along with a mountain of anecdotal and scientific studies “out there” that suggest reducing or eliminating both might help me live a little while longer…and if and when I find myself in the afterlife, I’m hitting Red Robin, hold the lettuce and tomato.

Pray

I finally remembered to pray about exhaustion. For those of you that make a habit of prayer already you may be able to relate to the fact that there are times where you/I can struggle with something for years and seem to make no progress.

Then I suddenly realize something important and say to myself (out loud in the car, with people looking strangely at me at which time I pretend to be talking on phone or maybe totally throw them off with a good pick of nose), “Ah, maybe I should pray about this?”

In the back my mind, tucked behind Jane Fonda doing her leg lifts, I can then hear Curly Howard (Larry, Moe and Curly) saying, “Nyuck, Nyuck, Nyuck…ah wise guy!”

Prayer is the most unscientific-scientific thing that I’ve done/do of all the ideas mentioned above. In my case, unfailingly, whenever I do this and try to combine it with an open mind things work out…even energy problems, bad blood or vitamin deficiencies. It just happens, it has no real logical explanation, taunts the ever loving engineer out of me, but just is. As a book I’ve read a few times says, “It works, it really does.”

Final Thoughts

Yep I’ve had the “luxury” of thinking, “What the hay man, might as well throw the kitchen sink and everything else at this, can’t hurt.”  This afforded me every excuse and lots of motivation to try different things.  I could, in fact, write even more about what I have done “wrong” or what didn’t work for my exhaustion.

But the disadvantage, of-course, of throwing the kitchen sink at a problem is I can’t pinpoint one clear cause/effect relationship that led to my being less exhausted. Either way I hope that some or all of the above might help you dig through your own experience and find answers to your struggles with energy and exhaustion.

Oh and full disclosure…I did take a glorious, Leland-pleasing nap last Sunday afternoon even though I didn’t absolutely have to…there’s nothing I quite enjoy more than a snooze on the couch by the fireplace, listening to the boys and Sarah play “Monopoly” or “Clue.” (-;