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.
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.
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.
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.
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.
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.”
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.” (-;