Thursday, January 27, 2011

Reflecting on lost friends, those still here, and those I continue to meet...

It's roughly two years to the day since I began treatment.  I took my medicine this week, including Zometa (a pricey little thing at $3,400 per infusion!) to hopefully spur my bones into healing quicker and resolving those remaining inactive tumor sites.  If they're all gone by the time of my next trip, with some luck I won't need to have a fine needle aspiration done on any of them!

And I deal with the side effects.  All things being equal, of course I'd rather not be on this stuff.  My muscle atrophy is bad...I used to have a pretty well muscled lower body and now it's nowhere near as strong as it used to be.  Between tiredness and the barrage of winter colds encouraged by my intentionally suppressed immune system, and of course my work schedule, it's hard to even think of when I might exercise but I really need to start physical therapy.  Damn, I should have made that one of my new year's resolutions.

But I remain very fortunate.  I'm thinking now of two groups of people...the first group is comprised, unfortunately, of a small but growing numbers of fellow Myeloma travelers I've met since my diagnosis.  Some were quite sick at the time of my diagnosis, and some were not yet diagnosed.  But several have given up the struggle and lost their battle with this horrible disease.  These people are friends in a very real sense...and I feel the loss.  Just today, I was looking through another blog and found that the woman that maintains it lost her husband literally yesterday after a single transplant a couple of years ago.

Then there's another group of friends who have chosen to control the disease, with minimal use of drugs and reserving stem cell transplant as a last resort, etc.  For a time, these friends seemed to be faring well but one by one they are losing remission.  I fear for them, not because they necessarily will have a dire end any time soon, but because it is a reminder of where the "control" path leads.  To eventual recurrence and the hope that science outpaces the disease.  And certainly there are more drugs now than ever before to help beat it down.  I will of course be reliant upon the newest of these in the (unlikely) event my own disease returns.

Then there's yet another group...people that contact me through my blog.  On average, I get perhaps two emails a week from newly diagnosed patients.  It is one of the most rewarding things in my life when this happens...I feel like I am able to provide a little perspective, and some optimism.  I started this blog, in part, because everything I read was so defeatist.  I remember the book saying "your new birthday will be the date of your transplant, nothing will ever be the same, etc."  Well I had two of them, and I can scarcely remember the month with confidence, much less the day.  And while there is a "new normal" that has replaced the "old normal," I would say that most things are very much the same.

So this is rambling, but I guess I would say to my second two groups: don't be afraid to take the fight to the disease if it's acting up.  Don't be afraid of a transplant if that's part of the protocol you and your doctor choose.  Don't fret about the side effects: the side effect of untreated Myeloma is death.  That's a bigger deal than hair loss!  Or the other side effects -- which I humorously found mentioned on another blog as NVD (never thought of my initials being a mnemonic for nausea, vomiting and diarrhea).  As I mentioned during my own transplant experience, they are very good at controlling the first two.

And while I strive not to be messianic in this blog, if you are newly diagnosed, PLEASE do yourself a favor and investigate aggressive therapy.  People are being cured in large numbers.  It bothers me so much when people refer to Myeloma is incurable.  That's simply not true.

All that said, the aggressive path is not for everybody, but three things are:

* Find a Myeloma specialist.  NOT just any old hematologist, not somebody who dabbles in it along with lymphoma and non-HL and leukemia.  But somebody who REALLY knows this disease.

* Take control.  Demand your labs.  Ask questions.  Learn everything you can about the disease.  Be your own advocate.

* Bring a positive attitude.  Once you have selected your treatment path, be confident in your choice.  Put your trust in the hands of your doctor.  Remember, any pill you take or infusion you receive that causes an unpleasant side effect is killing your cancer and upsetting it much more than the rest of you.

* Commit to getting better.  Make this the most important thing in your life.  If you have to move temporarily to be closer to a true center of excellence, do it.  Your home will be there when you get back.  If you worry about the expense, consider this is the fight of your life and if it's not worth burning through savings on this, what is it there for?  If you worry about vanity like hair loss, get over it and get better.  Nobody chooses this path: you are dealt a crummy hand.  You can either play it to win, or fold.  Play it to win.


  1. Excellent post, Nick. We really enjoy your blog. Best wishes!

  2. I might add one thing. Make sure you know where the washrooms are when you are out and about. I learned to do this during my pregnancy, and found this to be very useful as my stomach was not a happy camper.

    Well said Nick. Sometimes we get caught up in the hype about natural. Of course I'm right behind the curcumin, baker's yeast, etc. I follow that information. But when push came to shove, I told my onc "I would happily be bald the rest of my life if you told me I can get rid of this".

    I want so see my kids get married (well, if they want to) and I want to meet my grandchildren. I want to play with them.

    I just wish I had more energy. I still feel so exhausted most days. I am hoping that eventually, I will regain some of my old vitality.

    Don't be afraid. This isn't a game. It's a war. Arm yourself for battle, and fight the good fight.

    Never give up. Never give up. Never give up. Never give up. Never give up. Never give up. Never give up. Never give up.

    EVERYONE knows who said that, and how true it turned out to be.

    Thanks for a great post Nick.

  3. OK! I'll buy a nice Panama hat and stop whining about losing my hair.

  4. Such a helpful post, not only to newly diagnosed patients, but even to those who have been fighting the fight as we have for the past year. I love your 4 suggestions and concur that everyone should use them. EZ and I began the education process the minute we walked out of the oncologist's office and we continue to learn new things every day. We are now in phase three of the treatment plan outlined for us at diagnosis: (1) Chemotherapy and Radiation, (2) Stem Cell Transplant, (3) Maintenance. It feels good to be here. Yes, there are aches, pains, inconveniences, and changes in routine, but EZ and I choose to fight for his life. We have experienced untold blessing in the midst of it all and have hope for the future. We join you in mourning the loss of others who were fighting MM...all the more reason to support the research as we move forward, and to make wise choices about treatment options. Thanks for putting valuable information out there from one who knows firsthand what living with MM is about.

  5. I am just a cheerleader for the fight... but on my blog I urge my readers to get more than one opinion, and definitely to be part of the team when it comes to decisions and you cannot do that well if you are not informed.

    Your information is upbeat and hopeful and I am personally grateful for your taking the time to dispense it.

  6. Nick, hope drug free days are soon a part of your life.
    I don't know when I can tell if I choose the correct treatment. Now it seems that way. But in time, with more knowledge that may change. I did nine months of velcade/dex and then a single low dose Mel. transplant. No maintenance. No pills, except maybe a Tylenol every once in while. Getting close to three years post transplant with no signs of MM. I have no side effects...not even a twinge. I run, I have taken up horseback riding, I am working on training a young colt, I am trying to live like there is no reason to put off anything...with joy and love. I have held three new grand babies since transplant. I have not felt this good in years. I haven't even had a cold in almost a year. I don't think about what happens when the tests results change...that day will have to take care of itself. But I will live like I can't 'put things off till tomorrow'. It is in God's hands..and I believe that the timing of the end of my life on this earth was chosen long ago, and MM hasn't changed that date.

  7. Finding the right doctor is a very important aspect and the start point of treatment and medication.Things will be under control as the medication makes you feel better.
    Rhinoplasty Los Angeles

  8. Nick: You are a champion. Your wit and wisdom has helped me tremendously in my own adventure. You are much bigger than MM ever will be. Your friend, Sean.

  9. NVD, what a crack up! Oh and those two emails a week, I sent them over! Just kidding.

    Dave is just starting to get some consistent energy back. Its been a struggle. Always a good read Nick. Will be in LR end of the month. Let you know how it goes.

  10. "My muscle atrophy is bad...I used to have a pretty well muscled lower body and now it's nowhere near as strong as it used to be."
    Dude, I am in the same boat and I used to be a KICKER! So my legs went from something to nothing! Marathoners have bigger legs than me at this point...and I don't even run right now. Ugh. PT sounds like a great thing, it's just hard to fit in with everything else as I am sure you understand.

  11. Nick, compugen is looking for a partner for its very promising target. Perhaps you know a major pharma representative from Harvard, who is now at Cephalon or another company? ;-)

    It's a pity that this antibody - at date - is not under development with high pressure.



  12. Nick, great blog and info. 66 year old retired teacher. DX 2007, thalidimide and dex for 5 months then autologous SCT. Now on revlimid for maintenance. Started treatment with aredia 1x a month, now once every 3 months. Is there any advantage to zometa? I know it injects quicker, can cause flu type symptoms, can effect kidneys. Aredia doesn't seem to be healing my lytic lesions. Any advice? Another Linda