Advice To The Newly Dx?

just dx. just joined site. healthy, athletic, 37, and in shock. in one month i've read a 100 med journal articles, heard from experts at Mayo, Dana-Farber, and Hopkins, and flipped from angry, to depressed, to denial, on a daily basis. strange how priorities of last month are now ridiculous concerns. wake up in morning and fall asleep at night thinking of MM and how my life has changed.

 what advice can you offer based on your experience?  i am generally a very logical analytical person and understand my reasoning will be effected by emotion/shock. what is the best use of my time/energy.

thank you inadvance for any thoughts.

 

On 8/28/2008 vajoe wrote:

just dx. just joined site. healthy, athletic, 37, and in shock. in one month i've read a 100 med journal articles, heard from experts at Mayo, Dana-Farber, and Hopkins, and flipped from angry, to depressed, to denial, on a daily basis. strange how priorities of last month are now ridiculous concerns. wake up in morning and fall asleep at night thinking of MM and how my life has changed.

 what advice can you offer based on your experience?  i am generally a very logical analytical person and understand my reasoning will be effected by emotion/shock. what is the best use of my time/energy.

thank you inadvance for any thoughts.

Dear Vajoe,

   I am a MM survivor after 2 yrs meds (dex and "can't think of name), followed by own blood stem cell transplant in May, 2006 at Baylor Transplant Hosp. in Dallas Tx.  I too felt healthy but had reached 65 % stage when diagnosed. (That's a God story!) With meds eventually reached about 5% and was even less at time of transplant.  The steroids whacked me out (depression med helped equalize) but usually on that post-steroid weekend, would just retreat to my bedroom and get away from people.

     Yes, it is a shock and a scary one at that but MM is one of the most treatable cancers.  Despite all the gloom and doom web site articles I read, my own experience has been very positive.

      Two other high tech hospitals for treating MM include University of Ark. and Duke Univ.

    Do you have family or close friends who can help you through this?  

    Try to find something to make you laugh!  Look up MM chats on this website for more insights.  I'll keep you in my prayers.  

 

Peace,  Sharron (Age 66) 

Dear Vajoe,

When my mom was diagnosed with advanced multiple myeloma in 1994, a diagnosis of MM was pretty much still a death sentence.  But not so in 2008 - lots of changes all across the board.  Lots more opportunities for you to beat this thing than there were for my mom.

The fact that you are young and strong and athletic will stand you in good stead.  Believe it!!!

You are obviously an intelligent, take the bull by the horns guy. That will also stand you in good stead.

 But I suspect in your desire to meet this thing head on from the get-go, you've kind of overwhelmed yourself.  Yes, you need to be well-informed in order to make good decisions in the coming days, as you will need to do, but even for those diagnosed with cancer, there is such a thing as TMI, information-overload.

I don't know how soon you're going to have to say, "This is what I want to do to fight this disease."  Possibly quite soon.  But you know what?  That day will come when it comes.  In the meantime, there is something equally valuable to gaining information and preparing, and that is just stepping back and letting yourself be you for a little while.  Right now, at least for a little while, the very best use  of your time and energy might be to recoup, regroup, circle the wagons, and sit down and have a cup of joe. Breathe, deeply and often. Find a copy of Reader's Digest and read the jokes.  Do a Suduko puzzle, go to a ball game. Give your emotions and your love for life a chance to catch up with your mind, so that when you move forward, you can do so as a more relaxed and whole person.

Yes, you've got a battle ahead of you.  No, it's not going to be easy.  But it IS going to be doable, because you have the capacity to do it just like so many others have done it, one moment at a time, taking things as they come.

Once you've taken a few hours, or a few days - or however long you need or can afford - to gather yourself back unto yourself, you might want to aim your intellect on a changed tack.  Start taking a look at not what this disease can do to you, but rather at what you can do to this disease.  Learn how to boost your immune system through nutrition and supplements.  Learn not only how multiple myeloma assaults the body, but what in nature assaults multiple myeloma.  Embrace not only medical technology to survive, but also natural staples to optimize your health for the battle ahead.

There is a saying: don't work harder - work smarter. That means taking advantage of EVERYTHING you have available, or can MAKE available, to yourself to kick this thing in the butt!  And remember, a very important tool is taking time to take care of not just medical needs, but also spiritual and emotional needs, and the need of your body for physical challenge then relaxation.  Use your athleticism to best advantage.  Aerobic exercise, done in moderation so you don't burn off energy you need for healing, is a wonderful way to provide very important oxygenation to the entire body.

My mom was very ill with MM when she was diagnosed:  had she not driven  herself to the hospital and struggled to get into the emergency room  when she did, she would have died, and no one would have known why (her hemoglobin was 4 and her hematocrit was 12.)  They hospitalized her, ran test after test, found MM and started her on chemo IMMEDIATELY.  When she was just a few days into treatment, my father very unexpectedly passed away.  What huge blows this beloved lady suffered one after another.  But within several more days she was home, and she and I began the process of putting her life back together.

At that point her prognosis was pretty grim, but she lived another 4 1/2 years, and boy, did she ever live it well!  In those 4 1/2 years she turned a nice but oatmealish mobile home into an interior design marvel.  She took a nice but drab mobile home park lot and landscaped it so well that people would come to the community just to see her lot. Even in the last months of her life, she and I would travel for miles searching for drift wood and "root sculptures" and stones and plants and trees to add to the yard. She did her best to help every person that crossed her path. This woman did not quit living her life and doing the things that were important to her until her body  just absolutely gave up.  I think that's why she was able to survive the grim prognosis - she just wasn't about to give in - "no way, not today."

So for you Vajoe, once you've had a chance to regroup, and to assess your next steps, think about  those things that make you tick, that have made Vajoe who he is, and grab hold of them, for those are the things that will get Vajoe through this challenge. 

And remember to breathe  ......  sometimes you just need to stop and breathe!!

Sincerely,

Tre

I am so sorry for your diagnosis. I have sent you a private reply as well as posting here. I would recomend the Medifocus book on MM as it speaks in plain language about your disease and what to ask the doctor.

http://www.medifocus.com/index.php?assoc=linkshare

it is like a little bible on the subject. May you be quickly healed and all the very best. mms

On 8/28/2008 vajoe wrote:

just dx. just joined site. healthy, athletic, 37, and in shock. in one month i've read a 100 med journal articles, heard from experts at Mayo, Dana-Farber, and Hopkins, and flipped from angry, to depressed, to denial, on a daily basis. strange how priorities of last month are now ridiculous concerns. wake up in morning and fall asleep at night thinking of MM and how my life has changed.

 what advice can you offer based on your experience?  i am generally a very logical analytical person and understand my reasoning will be effected by emotion/shock. what is the best use of my time/energy.

thank you inadvance for any thoughts.

 

Hi Vajoe!  Sorry to hear about your diagnosis at such a young age, but as others have said, your youth and health are all in your favour.  As for advice, as a 'survuvor' of 6 years I feel that you are blessed to have TIME to research this condition before you have to make any decisions.  Yes, there is a lot to learn, but you will avoid heaps of pitfalls by understanding and knowing about what could happen.  Even just reading the messages on this board will stand you in very good stead.  But, having just read Tre's advice to you I'd give it full marks -- well stated and meaningful.  Keep a total focus - wholistic and make sure that you go to a doctor who specialises in Multiple Myeloma so that you get the very latest advice on treatment options!!  Best wishes on the journey ahead and on the decisions you will be called upon to make!!  Take a proactive approach, question why recommendations are being made, and judge for yourself what you think is needed.  It's your life and your body. Listen to what it is saying and take appropriate action. I have been doing this and I find it works best of all!  Cheers, Cath

Vajoe

I am new to this site and sure wish I had it 10 years ago - that is right - I was dx 10 years ago with advanced stage 3. Tre said it all.

My adult daughters found no hope of long term survival after much research. Now there is hope. The drugs I have taken after getting a 7 year remission from 2 stem cell transplants weren't even around 10 years ago AND there are new ones coming out all the time thanks to the Multiple Myeloma Research Foundation founded by Kathy Guisti a young woman who was dx in her thirties around the same time as me and realized there wasn't enough research being done to save her. Read her story it is very inspiring. At the MMRF annual gala last year (I was a guest) she raised 2 million dollars+ and had Lance Armstrong, etc. giving arousing speaches and they managed to exceed their $ goal. There is no cure. However, that day is coming and we just have to stick around long enough for the celebration. Take one day at a time and re-read Tre's message. My prayers are with you - djwin

Vajoe,

sorry to hear about your diagnosys, I wish you strength, faith, a good doctor you can trust and a supporting crew.

Yana

Dear vajoe,

 Sorry about your diagnosis... and i'd almost say sorry to have to welcome you to this board -- only you won't be sorry! For starters, this board is the BEST out there full of fantastic people: patients (survivors!) and caregivers and you will learn so much here.

My dad has MM, stage III, with significant bone damage. He was diagnosed almost a year ago and in so much pain at the time. (he's 77, fyi). I completely understand your anxiety and your thoughts wandering, as i was positive my father was near death and on his way 'out'. I had ZERO hope and only thought the worst. Well, i can tell you now that he is still here and doing so much better - and if you had told me this 9 months ago, i would have never believed it. It took me about 3 full months to calm down a little, and not be a hysterical maniac... and then a few more months to not think the worst of any little tiny thing that was wrong. My dad is back in the land of the living, very active and capable, and other than chronic bouts of diarreah on & off (more on than off) - he feels pretty good in general for someone with a Stage III Cancer. Point being, to reiterate what another poster said above - this cancer IS very treatble, so hang in there! I learned that it can be really bad when one is first diagnosed, but then for most people there really is a turnaround and an upswing! You are young, strong, intelligent and capable - you can do it.

Please stay in touch on the board and read all the posts (old and new) that you wish. You will probably learn more on this board, than you will at your doctor's office. And our main man, Kevin, has not chimed in yet... (he's probably out running my mayor) but when he does post, you will be enlightened, inspired and have just read the gospel!  :-)  Peace out.

Deb Jr.

 

 

On 8/29/2008 DebJr wrote:

Dear vajoe,

 Sorry about your diagnosis... and i'd almost say sorry to have to welcome you to this board -- only you won't be sorry! For starters, this board is the BEST out there full of fantastic people: patients (survivors!) and caregivers and you will learn so much here.

My dad has MM, stage III, with significant bone damage. He was diagnosed almost a year ago and in so much pain at the time. (he's 77, fyi). I completely understand your anxiety and your thoughts wandering, as i was positive my father was near death and on his way 'out'. I had ZERO hope and only thought the worst. Well, i can tell you now that he is still here and doing so much better - and if you had told me this 9 months ago, i would have never believed it. It took me about 3 full months to calm down a little, and not be a hysterical maniac... and then a few more months to not think the worst of any little tiny thing that was wrong. My dad is back in the land of the living, very active and capable, and other than chronic bouts of diarreah on & off (more on than off) - he feels pretty good in general for someone with a Stage III Cancer. Point being, to reiterate what another poster said above - this cancer IS very treatble, so hang in there! I learned that it can be really bad when one is first diagnosed, but then for most people there really is a turnaround and an upswing! You are young, strong, intelligent and capable - you can do it.

Please stay in touch on the board and read all the posts (old and new) that you wish. You will probably learn more on this board, than you will at your doctor's office. And our main man, Kevin, has not chimed in yet... (he's probably out running my mayor) but when he does post, you will be enlightened, inspired and have just read the gospel!  :-)  Peace out.

Deb Jr.

 

Ooops - typo....

And our main man, Kevin, has not chimed in yet... (he's probably out running for mayor)... 

Sorry!

Good Evening Joe;

what is the best use of my time/energy.

I don't believe that I can offer you any better advice than that which has already been mentioned by the previous posters. All of them right on the money.

I will offer you a saying I heard awhile ago and have tried to practise since being Dx.

"Stay positive because your body hears what your mind is thinking."

As much as you may not want to you are being invited into one of the most informative, experienced and compassionate websites I've come across. With your age and health I can say with complete certainty that YOU will see this beast become a treatable disease!

Take care;

Kevin