So basically, you should ask for the most powerful chemo available. When the doctor says, "WTF? Why?"

"Because **** the cancer, that's why."

Warning -DOWNER POST - possible tear jerk moment... real men should look away(or close the door)

Telling people what you have is one of the toughest parts, but I have one friend that I have been putting off.

Len was my best friend from age 3 to 25 or so when I moved away. As kids we lived at each others houses and his parents were basicly second parents to me. I was best man at his wedding. 18-25 we lived together...blah blah... No change of feelings, he is just the kind of guy that never writes, calls or emails. Always kept his emotions inside. So over the last twenty years, we saw each other once a year or so, but the last 10 years, we lost touch except for a long winded xmas letter we send out every 2nd year.(I never even knew he got it) Then 2 years ago he tracked down my brother, got my email and we reconnected

July 2009 Len's wife called me. His dad was sick and likely has days. Len's wife was worried about Len as he keeps it all inside and has few close non-family firiends. She says he still talks about me as a best friend and could I come.

Father dies the next day...we go to the funeral and spend 5 days with Len and family. It was as great as a service/funeral can be. Good friends. Long lost family. The crying sad bits were mostly good memories and family together. Drank lots. Told old stories. Lot of laughter.

But his dad died of this cancer I had never heard of "multilple Myeloma". The doctors missed it for so long that by the time they figured it out, he was not treatable and his lower spine was rubble. He had heart issues for 25 years and back problems for 10 so the symptoms were missed. He only lasted 2 months after diagnosis and they were not nice.

Could not bring myself to call and talk to them, so I sent a long email today..... It feels like I am saying "you know that cancer your dad died of...I have it....but mine is treatable"..... I guess I feel if I reversed the roles, I would hear that a bit. Feel like I am dragging up the worst thing in his life. But you have to tell one of your best friends.

I used to think the hard part of getting really sick, was the being sick. So far it has been the telling people and the waiting. The support of family, friends and here has been amazing and helpful. Upsetting people not so much.

Great. Maybe I am not as much of a self-involved jerk as I thought...... Now Cancer is even ruining my self image. f..k cancer. Give me syphilis anytime.

Cue the appearance of teh herp!

As a cancer survivor I wish you well Merek, and am looking forward to the day when we welcome you into the 'kicked cancer's ass' club.


(nut cancer for anyone wondering )

OP is awesome and therefore he should get well ASAP , i wish him the best of luck

Thanks Chip - That is a club I want to join. I mean the "ass kicking club" not the "nut cancer" one

Back in my 30s I worried about nut cancer before ...not due to family history or long term issues, more due to a very odd and painful story. Maybe after dinner I will post that. It is the oddest and least believable pickup/injury story I have.

That's really crazy that you came down with the same thing his father had. I'm glad you sent him an email and told him about it. I think it's great that you two have been friends for so long and that you were able to go hang out with him when his father passed away. I'm sure that meant a lot to him, especially since he has few close friends. You sound like a really cool person, Merek (or is it Derek? i'm so confused!)

Good luck tomorrow. I'll be curious to find out what your treatment plan is going to be.

Get some sleep!

I have always wanted to be tough. Along the way I have changed my ideas of what tough is but I still want to be it. You sir are tough.

Want you to know that I am lurking this thread. That is all.

Well, I almost didn't read your post since I am one of the last real men on earth, , but it was a good story and I am glad I read.

I can only imagine what you are going through. But, one of the things I would imagine is that this telling of other people, especially someone you care about who had their father die of the same thing, would be the worst. You did the right thing all around.

I can't imagine how awkward it must be to tell people face to face that you have something like cancer.

Have you thought of joining any support groups, so you can talk to people who have been through some of the same feelings you might be feeling? I don't know if you would find that helpful or not. I'm just thinking that seeing face to face that you're not the only one could make the problem feel maybe not less scary, but less isolating in its emotional impact and general uncomfy life weirdness.

While I've struggled with a chronic blood disease all my life and I applaud and encourage being open and honest with people about what is going on with you, here's something important:

Don't let your cancer define you.

It's really easy to not really notice it happening, but it's clutch that you don't become known as "Yeah, he's that guy with cancer".

While the attitude you've projected in this thread makes it unlikely you treat this in anyway but the most mature and upbeat manner, keep your eye out for that whole "cancer guy" thing.

Seriously though, if I was a friend of yours I don't think I could view you in anyway but as "that awesome dude".

Great advice.... It is so easy and people will let you. At least now anyway and it looks like this process in going to drag out till the fall before my life is not mostly about it.

I am trying to make sure I talk to people about what they are doing and not just about me. Had dinner with friends and tried to steer the converstion to her trip to Mexico and his switch to living in two cities at once(3000 miles apart) and his the wife mostly staying in one.

Cancer Clinic Trip - The Good, the Bad and the Szechuan followed by Belgian Torte Mouse.


The Best - The pressure on my Sciatic nerve in not caused by the collapsed vertebrae but by a plasmacytoma which is basicly a plasma cell tumour pressing on the nerve. YEAH HA... they can zap this puppy with radiation and shink or kill it. And I can do sh.t again. No hockey or lifting but hopefully most normal stuff. Maybe even work(sit in desk chair, tell clients why we won't lend them money for dumb ideas, etc) Hopefully this happens in 1-2 weeks with results in 1 week more........ Who would have thought a cancerous tumour on my spine would make me happy? Priorities change. Collapsed Vertebrae appears to have enough strength to handle normal light activity....just no kinky sex on the trampoline. Back will likely still be a bother, but not a crippler.

2nd best - Takeout dinner with 2 old friends, few beers, amazing Szechuan Chinese food, wander over to a dessert place at midnight for Belgian Chocalate Torte Mouse.... For those that think this sounds a bit active for a cancer patient with a crippled back....Day 2 of my Super steriod Dexemetasone....is the peak of the hypermanic phase and it is also a antiinflamitory used for spinal surgery... Day 3-4 is still manic but a bit more gittery. I now have to take Adivan to sleep as the Dex doesn't let you come down. Downers to counter the uppers.

The Bad- This is all going to take longerrrrrrrr.

Current schedule looks like

• March - finish Dex Treatment
• April/May/June - Start 3 or 4 -21 days treatements of Dex with Valcade(2 days a week in hospital by IV). At least this is local hospital with only 1-2 trips to Vancover
• Late June -Trip for Stem Cell Collection - One week of 3-4 days of IV drugs and 1-3 days of collection
• July - Single day of nasty chemo, one day later stem cell transplant. 30 days of go to hospital(have find a place near by for month or so) every day or two for blood tests, antibiotics, transfusions, etc..... 30% of people end up hospitalized during this but only .5% die. Luckly I like to gamble.
• August go home if no major complictions
• Oct-Dec - back to work.
• June 2011 - a month traveling in Southern Italy and Sicily - I alway believe in having a carrot to chase.

grood luck, trip in italy sounds great.

Kudos on being able to tell people. When I had my little bout I didn't tell anybody, that I recall. Only my family, roommates, and employer knew. I didn't want pity or to be treated strangely - and people get strange when they are confronted with cancer.

One thing I remember clearly is how weird people would be at the medical center. I'd get on the elevator, press '4' for the oncology floor; people would start moving away from me like I was contagious or something.

I'm confident you're going to come through fine. Keep posting, tl;dr will provide lots of positive energy for you.

If you don't mind, I have a question.

At one point, you say that your cancer is uncurable. But then later (to your friend) you said something like "but mine is treatable"

Can you clarify that? Does this cancer ever completely go away? If yes, awesome. If no, in what shape or form can you enter remission?

The telling people is by far the wierdest part. Sometimes it feels like I am passing out sadness. But living is a small town in a very public but face to face job, I knew it would get out there quickly. So I just told people "whatever, tell anyone" My personality is flip and blunt but friendly so almost anyone that knows me ends up laughing during the discussion....expect the crying huggers...and you can't do much with them. Hug and cry and make bad jokes on parting.

And you are right. The posting helps. The lounge feels like a easier place to let out some stuff than just talking to people. Writing is different than talking. Uses a different part of the brain......and thoughts.

I am not a doctor - but as I understand it.

The problem plasma cells are clones of each other. Normally your body spots a problem(gonorrhea) it produces a specific plasma cell to deal with the problem and clones cells to go hunting for that problem.

So with Mulitple Myeloma the body produces clones in too large a number of one specific type of plasma cell/protien. The result is at the current time I likely have 1.2 billion clones of one plasma cell. They are everywhere. AND they are causing themselves to reproduce.

Incurable ....can't kill them all without killing me.

So the treatment is kill as many a possible and try to get the bone marrow back to producing normal volumes of other stuff....Monitor and when(not if) the balance swings out again...repeat. Usually a blood protien is monitored monthly and a rise is spotted early...and you have time to decide how and when to act. Sometimes they put you on a drug to slow the rise until it reaches a level that starts to do damage. This can be months or years.

Remission - Depends. Some Plasma cells resist some drugs, some come back faster.. Some people, the bone marrow transplants give 8 years remssion...some get zero. Some treatments have nasty ongoing side effects(Peripheral neuropathy - numbness and pain in hands and feet seems to be popular)

Good remission stories are 8-10 years before next treatment
Bad are 1-2 years.
The plasma cells also become resisitant, so last rounds drugs, may not work this round. Transplant may work only once or twice..and then not.
Luckily big Pharma seems to see profit in the area and has lots of drugs coming in.

In my case the good - is I have this chromosome swap 14-4 that a specific drug, Valcade, treats very well and remission times have been good. 5 years ago the drug, Valcade, was not used and I would be in the "don't look good" catigory. The bad is this is a drug where neuropathy is a issue.

Another drug used a lot is thalidomide for those born in the 60s.

Thalidomide supposedly has some very good uses, but I do remember the scaryness of the results way back when.

What luck that a drug works particularly well for your genetic make-up.

Thanks for the explanation. Keep up the good attitude, and if you ever get down you know where you can find a bunch of degenerates to raise your spirits!

I feel like i need to respond. I highly suggest getting on a good diet and exercising. There is a MOUNTAIN of information on the health benefits or fruits/veggies/natural foods in regards to cancer regression. I saw a study in rats where they were fed 50% broccoli/50% carrot and it led to major tumor regression(like 70%). I realize that's a stretch, but it's still proof of the power of natural plant compounds.

Good nutrition also lowers the side effects and damage caused by chemo.

PS. LOTS of veggies, particularly cruciferious ie broccoli brussels sprouts cabbage cauliflower


excuse me if this is common knowledge

The Good News - Booked for Tuesday the 30th to have the plasmacytoma/tumour in my vertebrae zapped. Hopefully I can then be active and get some fitness back.

However now it looks like they have to give me some blood first as my red blood cells counts are way low. Apparently normal is 140, a month ago I was 108 and Tuesday 79. At 75 they say the panic is on. Going upstairs in the house puts my heart rate up to about 150 for 5 minutes. But I don't really feel tired. Odd.

They have to fly in special blood......ohhhhh, I'm special......as they need "radiated" blood so it will not interfer with all the cancer testing or some crap like that.

good luck with the blood/zapping thing Merek! Keep us posted.

Yep, Good Luck Merek. I am following and keeping you in my thoughts. I my not be popping in with anything inspirational to say all the time but I do care and am always lurking.