Dreaded Cancer, Mark III

[Keeled Over]

New Public Service Announcement. Putting this out there for awareness. Seems I'm sick all of the time so might as well spread the word - some good has to come out of this. I do not do this for sympathy, I do it just in case it can help someone else. I also have fun with it - my buddies and I joke about it, hair falling out, etc. And if you are thinking about prostate cancer let me know. I've got volumes on that.

So, this installment involves Multiple Myeloma. It only affects 1% of the population, so I got that going for me. My bone marrow is cranking out protein, way to much - and the liquid part of my blood cells can't handle it, hence the grim outlook. Due to it being rare it is typically not looked for - it gets discovered by accident, which is my story. It really doesn't have symptoms, outside of this - "you are feeling unwell." Diving in a bit more, that was my experience. For all of last summer I felt "down" by about 10%. I could do everything, ate, slept and everything seemed fine. Just a tad burned out. This went on for about 8 months until discovered. Some people can also have difficulty recovering from other illnesses or have cuts and scrapes be slow to heal.

And as of 9:40 am EST, here is the fun part. There is a pre-cursor to this that is designated "Smoldering Multiple Myeloma, which it turns out I have. This is all based on a point system used to determine the seriousness of the illness. The bone marrow biopsy which, by the way, doesn't really hurt at all, said I had it, the Pet Scan reduced the severity because it showed no bone damage so far, so I am smoldering and thrilled to be so.

You can't do anything for it so you get your blood checked every 4 months and wait until it blows up. It might not ever blow up. If it does and goes full blown people have lived with it for years, but don't bet the farm on it. So, as of today, I just live my life and wait, which I have found is easier said then done.

No restrictions right now - I asked right away about strenuous canoe trips, skiing, ATV's and all and I can go right ahead. I am not a hypochondriac, but as said earlier if this can help 1 person I'm happy. If your feeling a bit down for a bit and just can't shake it, it's just a regular blood draw to get it going. And while it's rare, if you did have it catching it earlier is best.

So, the summary is, I have the building blocks for this cancer in my blood right now and it's just waiting to blow up. Might be tomorrow, might be never. Just try not to think about it.

"What is the purpose of your trip to Canada........."

 

[Glenn MacGrady]

Michael, I see you've been very forthcoming in discussing your (pre-) cancer diagnosis in a few threads since I've been away from the board. Thank you for that. Really! A great many of us are older here, and we have discussed how various diseases and ailments have or have not interfered with canoeing and other aspects of our lives.

Some of us know what we're going to die of, some suspect the culprit, and others do not yet know. From what you say and from some brief research it seems that smoldering multiple myeloma is one of those diseases that has an extremely variable prognosis. It may get worse in a few years or never. When one is older with certain cancers, watchful waiting seems to be the recommended approach because the cancer may be such a slow growing thing that something else may get us first.

I know every year I become more and more afraid to go for my annual physical because I know eventually the news is going to be much worse than the several more minor aches and pains I now have. The last time I saw my cardiologist and asked him if I should go back to the gym, he said that it might be prudent for me to take a nuclear stress test as a precaution. That sounded perfectly rational to me, except that I did not respond with my reason or intellect. I responded with fear—fear of taking the test and fear of going to the gym—so here I sit at a keyboard instead.

I don't think I've handled my 70's very well as far as physical activity and mental outlook go.

You can do better. I think you should take your planned canoe trips and do everything else you can on your bucket list. As you suggested in another thread, do it all sooner rather than later because none of us knows when the next bend in the river of life will come, or what's around it.

We look forward to your presence here and reading about your trips for many, many years to come.

 

[Gamma1214]

"An object in motion tends to remain in motion"... While so much of my schooling has been forgotten, I retain what's important.

Make it catch you (...if it can).

 

[JohnSand]

Maybe appropriate that I'm reading this now. 32 years ago today my closest brother died of cancer, he was 31. That was very sad, it still is. But I'm sharing it to make the point that all life is temporary. Whenever I have health challenges (just discomfort and inconvenience so far) I remember that I have close family and friends who didn't live to see 35. I know someday I will join them across the bar, that's okay, it's part of life. And it makes life valuable. Keep paddling, one way or another.

 

[Keeled Over]

Michael, I see you've been very forthcoming in discussing your (pre-) cancer diagnosis in a few threads since I've been away from the board. Thank you for that. Really! A great many of us are older here, and we have discussed how various diseases and ailments have or have not interfered with canoeing and other aspects of our lives.

Some of us know what we're going to die of, some suspect the culprit, and others do not yet know. From what you say and from some brief research it seems that smoldering multiple myeloma is one of those diseases that has an extremely variable prognosis. It may get worse in a few years or never. When one is older with certain cancers, watchful waiting seems to be the recommended approach because the cancer may be such a slow growing thing that something else may get us first.

I know every year I become more and more afraid to go for my annual physical because I know eventually the news is going to be much worse than the several more minor aches and pains I now have. The last time I saw my cardiologist and asked him if I should go back to the gym, he said that it might be prudent for me to take a nuclear stress test as a precaution. That sounded perfectly rational to me, except that I did not respond with my reason or intellect. I responded with fear—fear of taking the test and fear of going to the gym—so here I sit at a keyboard instead.

I don't think I've handled my 70's very well as far as physical activity and mental outlook go.

You can do better. I think you should take your planned canoe trips and do everything else you can on your bucket list. As you suggested in another thread, do it all sooner rather than later because none of us knows when the next bend in the river of life will come, or what's around it.

We look forward to your presence here and reading about your trips for many, many years to come.

Thank you Glenn. I've got my head wrapped around this now and am charging ahead with your advice. I have lists of stuff to do right through December.

 

[UCanoe_2]

Keep on movin', KO. I lost a dear paddling buddy to multiple myeloma about 11 years ago. It's encouraging that you are in the "watchful waiting" phase.

 

[Keeled Over]

Keep on movin', KO. I lost a dear paddling buddy to multiple myeloma about 11 years ago. It's encouraging that you are in the "watchful waiting" phase.

Thank you U.

Sorry to hear of your loss. I'm going all out till I drop!

 

[Black_Fly]

Best wishes. Everyone over 50 is in a precancerous state, really. Best saying I’ve heard was from my physical therapist, who is fond of saying, “motion is the lotion.”

 

[Keeled Over]

Best wishes. Everyone over 50 is in a precancerous state, really. Best saying I’ve heard was from my physical therapist, who is fond of saying, “motion is the lotion.”

Thank you BF. I agree, just keep moving. Both Chick and I got new mountain bikes for just that reason, and we are thinking about getting fat bikes for the winter.

 

[ppine]

Nobody gets out alive. I wish you all the best with your health challenges.
Heart attack
Melanoma
Colon Tumor
Two mangled legs.
Tomorow I am taking my boat out. That is the only revenge.

 

[jdeerfoot]

I will going on a Canadian trip with friends I have known for some time. All of us are retirees ranging in age from late 60’s to late 70’s. This trip has been setup by someone who is very organized. In a pre-trip questionnaire he asked us about existing medical conditions. When my wife saw the completed form on trip participants she remarked that we should probably have a medic going with us considering the list of chronic ailments. I am encouraged that people like us are continuing to take these trips.

 

[recped]

I have always arranged for my cancer surgeries (3 of them) to take place during the off season so that I would have full summers for paddling. On the first one I had to skip a Spring trip in order to finish chemo.

 

[ppine]

Nearly everyone has to face up to the fact that there is more risk in going on remote trips as we age.
I got really depressed after a heart attack because I was afraid there could be no more such trips.
After cardio rehab and some good drugs and exercise my heart function is pretty normal.
This year I am going backpacking. Probably no more 75 mile river trips through canyons with no roads, but plenty more river trips and some lake trips.

 

[Erica]

You all give me great inspiration to keep tripping. (My chronic conditions are no where near as tough as fighting cancer and heart disease.) Thank you.

 

[Keeled Over]

You all give me great inspiration to keep tripping. (My chronic conditions are no where near as tough as fighting cancer and heart disease.) Thank you.

Thank you Erica. The way I look at it many of those little kids at St. Jude's Children's Hospital we see on TV never saw the age of five. I have nothing to complain about!

 

[Gamma1214]

...she remarked that we should probably have a medic going with us considering the list of chronic ailments.

My sister has suggested that I start traveling with a medical professional of some sort... One that can recognize the signs of a stroke.

 

[ErktheRed]

Keeled Over, I commend you for your positive outlook with your diagnosis. I think it can be hard, or challenging at times to keep a level head with such news while talking about what’s going on. I may not have the same thing but I was recently (3 weeks ago) diagnosed with MDS, a potential pre leukemia. After being diagnosed with PNH & Aplastic Anemia, a very rare combination of blood disease. It prepared me for this new diagnosis and for my upcoming chemo and bone marrrow transplant, if I have a match. So far there’s none. So the way you’re keeping your head up, and talking about what’s going on, I think we all can find peace in your words. And listen when someone says get that random blood draw. Or physical. It could really help keep someone healthy, or come back with no news. Which is what we hope. None of my oncologists agree with my lifestyle, but as it’s been said… you just never really know what’s going to happen, when things could happen. So live and love now. Paddle or travel or ski within your abilities. I’m one year shy of turning 40, near 3 years of infusions, multiple bone biopsies, countless number of needles in my arms and who can remember the rest?.. not me…. Forgetfulness I part of my “disease”

Anyways, I hope you continue to keep a positive look at this. Know that your words are helping more than one person. And keep your humor with this alive, it’s important to not lose joy and laughter.

Ps. I just got back from a short week in Killarney and found that I have a new pace of travel now. Seems to be more roses (lady slippers) along these paths