BREAKING NEWS: Combination therapy numbers including Kyprolis trending unexpectedly high

To contact us Click HERE

Dr. Berenson dropped several bombshell this evening on our Myeloma Cure Panel discussion.  REAL NEWS!

Although Dr. Berenson couldn’t share specific date that he will be presenting next week at ASH in Atlanta, he let slip that substituting Kyprolis for Velcade in RVD or other multiple drug resistant patients is achieving surprisingly high success rates.

When I pressed him on the low 23% response rates in the clinical trial used to obtain FDA approval a few months back, Dr. Berenson astutely pointed-out that the low response rate in patients that had become resistance (refractory) to Velcade was due to the fact that Kyprolis was used as a single agent in that trial.  “Carfilzomib (Kyprolis) works much better in combination with other myeloma drugs.”  He asserted.

So by simply substituting the “K” for the “V,” in RVD, Dr. Berenson has been able to achieve much higher success rates than when Kyprolis is used as a single agent.

Additionally, Dr. Berenson pointed-out that if 5% of autologous stem cell transplant recipients are still in remission after 10 years, the identical results can be duplicated by patients that have never transplanted and have only used novel therapy agents.

Love him or hate him, Dr. Berenson is always willing to share his opinion.  He is not a big transplant guy, preferring therapies that “Do no harm.”  He also isn’t a big fan of hitting myeloma hard up-front.

If you were going to design a treatment continuum, Total Therapy and tandem transplants and donor transplants would be on one end, and Dr. Berenson’s incremental, try and avoid using a transplant whenever possible would be on the other.  As a matter of fact, Dr. Berenson definitively stated to a follow-up caller:  “I never recommend a transplant.”

This seems a bit rigid to me, but I admire Dr. Berenson and his “less is more,” quality of life approach.

I was also surprised to learn that he isn’t a big fan of curcumin, although he conceded that using it “probably doesn’t hurt.”

This was a fascinating discussion, with lots of great questions from callers and the panel.  You can listen to a replay of the broadcast by CLICKING HERE.

Dr. Berenson stressed that he thinks it is a mistake to dismiss Doxil and Thalomid these days.  Both are “extremely active” in the lab against myeloma,” Dr. Berenson added.  He said that he uses Thalomid and Doxil in low doses on Velcade days and has had amazing results doing that.  Dr. Berenson prefers Medrol to dexamethasone.

Dr. Berenson isn’t afraid to experiment with patients, using unique and unusual drug combinations–seemingly anything to help his patients avoid uncomfortable side effects.  He tries to take what his research team learns in the lab and apply it to patients right away.  He sees a lot of patients in his practice, and it’s obvious that he has learned a lot.

I would like to share this:  If Dr. Berenson’s excitement about new data being revealed at ASH is any indication, I’M THRILLED TO BE SPENDING FIVE DAYS IN ATLANTA NEXT WEEK!

I will be reporting all of the news here—and while Tweeting and blogging for the IMF—from Friday morning through Tuesday at noon.

I had better rest-up!  Feel good and keep smiling!  Pat

Another Special Mother's Day

To contact us Click HERE
It's been way too long since I last posted a blog.  Life has gotten busy!  Which is a good thing.  Most of our free time these days are spent on the soccer and baseball fields.  I feel like I am being pulled in a million different directions.  Every night I plan on sitting down to write, but  usually collapse on the couch and fall asleep!

Well, tomorrow is the big day.  Mike and I are competing in a Mother's Day Sprint Triathlon in Sudbury, MA!  Before I went into the hospital in November before my transplant, Mike wanted to make sure that we both had something BIG to look forward to and to strive for.  So he registered us for the triathlon.  I had participated in it last year.  Swimming is definitely not my strength but the race itself was so exhilarating.  Just being surrounded by so many people (of all shapes and sizes) all participating in the same event.  It is amazing to be there and especially to be a part of something so great.  For so many it has been a fitness goal or on their bucket list, for others, it is a training triathlon for a bigger race in the future.  I can remember last year Mike telling me that he had no desire to  do one.  And now today, he has gotten in the best shape of his life, he has become a great runner and he has been swimming for the last 12 weeks.  I am so proud of him.   I know initially he signed up for me, but you know what, he really is excited about doing it!  
I have not physically trained for this race all that much.  Although my running is stronger than ever, Thursday was my first time in the pool since last year.  I managed to swim the 16 laps necessary for tomorrow.  It is not pretty and not fast, but I can get from point A to point B.  Yesterday Mike, my friend Shayna and I did a brick. We did a 9 1/2 mile ride followed by a 2 1/2 mile run.  I forgot how challenging the transition is from riding to running. My legs felt like tree trunks!  
It's funny I can feel the anxiety from many of my friends doing the race tomorrow.  And all of them have been training for it.  I am probably the one who is least prepared for it!  Yet  I am so excited to do it.  You see, it is coming up on my one year anniversary since I was diagnosed with Multiple Myeloma.  Last year at this time I was still struggling with a healing sternum and I had a strange bump on my chest which was later confirmed to be a plasmacytoma.  I can remember swimming in the last triathlon and struggling with the pain in my sternum.  Little did I know what was really going on with me.  The fact that it is one year later, a stem cell transplant later..... I can't freaking believe it!!  In the last year I have felt so close to death.  I honestly was doubting whether or not I was going to make it to see my kids begin school last September, let alone be running again or participating in a Triathlon!
As I explained to Mike on the soccer field this morning, I feel like I need to pinch myself everyday.  I feel so happy and so incredibly blessed for how my life is today.  It's funny so many people tell me that I should move on.  That last year was last year and this is now.  But you know what?  Every day I do reflect about the past year.  But I also think of where I am today.  I feel stronger than ever.  In fact I am up to running 10 miles!  I think reflecting on the last year helps me really appreciate today and how lucky I feel and how happy I am.  As we all know today is all we have.  Life can change on a dime as I have experienced firsthand.  So everyday I feel great, I get out there and run and enjoy it fully.  I beat this cancer this time and I only plan on getting stronger from this point.  So when it tries to attack again I'm ready to put up a good fight!
As I was running the other day, reflecting on all that has happened, a special person came to mind, Kathy Giusti, Multiple Myeloma Survivor and founder of the Multiple Myeloma Research Foundation, MMRF.  Kathy was diagnosed in 1996 and at the time was told that she only had 3 years to live.  Today she is still in a "Complete Response".  I am so grateful for all of her efforts with the MMRF.  The MMRF has played such a big role in bringing four new treatments for myeloma in the past four years.  These treatments, now the standard of care for multiple myeloma patients  have helped to almost double the life expectancy among some patients.   Kathy Giusti was just recently named one of Time Magazine World's 100 Most Influential People.  Tomorrow I am dedicating my race to Kathy Giusti.    I feel strongly that I am here today largely because of her efforts.  It is my way of thanking her for all that she has done for the Multiple Myeloma World.  Her strength and perseverance to be there for her daughters, her refusal to give up hope,  and her dedication to finding a cure, has truly been such an inspiration for me.  So on this Mother's Day, I will be thinking of one very special woman.   Kathy, as I am struggling in the pool swimming my last lap, pedaling to the transition area, and running to the finish line,  I will be thinking of you!
Happy Mother's Day to all the mom's out there.  To my mom, I love you and miss you so much and I am counting the days until you and dad come out to visit!
Love-Jeanie

Let's Hear It For Marty And His Cure For Cancer Tour!

To contact us Click HERE

Tomorrow morning we will be all leaving the house early to cheer on Marty Perlmutter who has traveled on a 1,400 bike journey from Jacksonville, Florida to York, Maine.  He is riding to honor his best friend, Roy Gross, who lost his battle with Multiple Myeloma in March, 2012.  Marty has set a goal to raise $20,000 for the Multiple Myeloma Research Foundation.

Marty is staying in Nashua, NH tonight after traveling 100 long hot miles today.  Tomorrow morning my husband Mike will be joining Marty, as he completes his journey to Maine.  Mike was so inspired by Marty and asked if he could join him for a few miles. During the last couple of years, Mike has taken up cycling.  He has participated in several sprint triathlons and charity rides.   After talking with him, Mike convinced himself to ride the 80 plus miles with Marty tomorrow.  This will be Mike's longest ride to date.   I am so overwhelmed with love and pride for my Mikey.  There truly exists nothing that man will not do to support me.  As I sit to write this blog, my eyes are filled with tears.  He is the hardest working man I know, yet he always makes his family a priority in his life.  And now he is going above and beyond riding along with Marty supporting the fight against Multiple Myeloma.  Everyday Mike shows me how determined he is to support me in every way to continue to fight this crappy disease that robs the lives of so many people everyday, like Marty's best friend Roy.  I don't know how I got so lucky that June '92 back in UNH!  Mikey, you are my one and only one and you continue to give me butterflies everyday!


I will be sure to take lots of photos tomorrow.  The kids have packed up our cow bells, pom poms and signs.  We will all be leaving early tomorrow morning to give them a fun send off as they hit the pavement.  Of course, then the kids and I will go home and chill for about 4 hours and we will travel to York to see them get to the finish line at the beautiful Nubble Light in York, Maine!s


If you would like to view Marty's blog please click on the link below:
2012rideforcancer.blogspot.com   

Also Marty's web page for donations is:
www.active.com/donate/2012mmrfYor/MartyCure

I'm In Remission, So What's Wrong?

To contact us Click HERE
I cannot believe how many times I have wanted to sit behind my laptop and write.  This blog began for me as a great way to share with friends and family on my progress, to reach out to those affected by Myeloma, and lastly if I am being completely honest, a free source of therapy for me.  Yet time and time again I seem to find excuses for not writing.  Some days while at the lake with my kids  or while I am out watering my garden, thoughts and sometimes entire blog posts will enter my mind .  Yet, I never take the time to write or type them.  So lately I've questioned myself why I stopped.  And I guess it's because writing for me has always been about being honest and open.  And lately, that is becoming more and more difficult to do.

It easier to get up each day, and stay busy entertaining the kids, running errands, trying to keep up with the garden and lawn (which is pretty pathetic now thanks to the lack of rain), keeping up with my recent obsession with Pinterest and my new found love for restoring furniture, choosing new paint colors for every room in my house, and whatever else I keep my mind busy doing,  than it is to stop and reflect about what is really going on with me.

I feel like lately I am stuck in a temporary in-between stage.   Although I am considered "in remission", I am still on a maintenance regimen consisting of Revlimid and Dexamethasone 3 weeks out of every month, and I have monthly infusions,    My hair is slowly growing out ( I can actually make a tiny ponytail), and I have regained some of the loss muscle and weight back.  To most people I must look healthy and like life is back to normal.  In fact, most people no longer ask how I am doing.  Maybe they are afraid to ask, or just assume that is everything is fine.  Honestly, it feels good to no longer receive the gloom and sad looks I was used to receiving a couple years ago as a sick cancer patient and mother of four young children.

So what's the problem?  I know right?  That is what I keep asking myself.  Well, for those of us who read up on Myeloma daily, we know that this disease is still incurable.  That it really does not go truly in remission.  Up until a few years ago a 3 year life expectancy was the best one would have.  Fortunately with Revimid patients are living longer.  The goal is to keep it at bay for as long as possible with the hopes that when I do relapse, my body will respond to the therapy.  And if it doesn't,  hopefully a new treatment is available. Ultimately, however the Myeloma usually wins the battle.    Daily, I Google Myeloma and read up on every little piece of new news that is published.  Of course what also pops up are far too many obituaries of Myeloma patients who have lost their battle.  I follow many blogs from Myeloma bloggers and although many of their stories inspire me, there are also several that write about their struggles with relapsing.

Although I try not to think about if and when I relapse, it of course enters my mind often especially during the late hours of the night.  So although I am so very blessed to be "in remission", it is challenging at times knowing I have a ticking time bomb inside.

 Running used to help me through some of those challenging moments.  I felt strong running, almost invincible.  Crossing the finish line at The Boston Marathon was so powerful.  I had so many doubts in my mind, even putting aside the extreme of that heat that day. For well over 6 or 7 months I have watch my endurance decrease.  My body screams at me when I have passed the threshold.  Whether it is the long term effects from being on Revlimid or perhaps the disease itself, the bottom line, my body has changed.  Lately I haven't even had the desire to get out there and run, let alone hit the gym.  I know the endorphins I get from exercise help, and that my body needs to stay strong, so why aren't I out there doing it?  At the same time, Mike is training for his first marathon this fall.  This should also motivate me.  But no.  I am crazy proud of him, but I really don't feel the need or desire to join him.  What the hell is wrong with me?

 Sometimes I feel like the days pass and I can't feel passionate about much.    Also as I mentioned, my energy has been pretty low as well.  I know that a lot of that is side effects of the Revlimid and the lack of sleep due to the steroid and just being a busy mom.  But I was desperate for some change.

 A couple of months ago I talked with Dr. H about slowly coming off my anti-depressant.  I had been on a couple different drugs since my diagnosis.  I ended up staying on Effexor which also has an added benefit of helping out with the hot flashes from being put in menapause.  But the past few months I realized more and more that I was beginning to feel like I was going through the motions in life.   I don't ever really feel like I can be really happy or sad for that matter. Also my energy has felt like it has been zapped.  So after reading up on all the different side effects of Effexor, I thought I would try coming off of it and see if I felt any different,

Well the first week pretty much sucked.  My head was in a constant cloud.  I had dizzy spells and felt like my brain was buzzing.  I had a new found respect for anyone going through drug withdrawals.  Day after day I waited for that to subside.  It finally did after about 5 days.  Then it was the tears.  Once the floodgates were opened they just wouldn't stop.    This was right around the same time of Marty's ride that I previously posted.  It was such an inspirational  day.  It was a day full of emotion.  When we got home that night from Maine, my son Mitch knocked at my bedroom door.  He just looked at me with tears in his eyes and told me he was really sad. He said to me "I guess you are one of the few lucky ones who is living".  Gulp!  Yup, you try looking in your 11 year old son's eyes and come up with a quick response to that one.  I just held him and cried and said "Yes I am".

Mike and I were up late that evening on the patio.  Basically him trying to console me.  As always he stayed strong and tried to pick up all the pieces to put me back together again.

From that teary moment there came many many more.  In fact, I couldn't hide the tears from the kids.  It reminded me so much of those first few weeks after I was diagnosed.  One look at the kids and my eyes filled up.  Wow maybe I really didn't need to be thrown into reality?  Maybe it was good to be numb.  Well after a few days of tears, I turned into bitchy mom who had no grip on life.  My poor kids and Mike.  I didn't even get like this when I was on the higher doses of Dex a couple of years ago.

To top it off we were heading to Maine to spend a week with our closest friends and their kids.  There was going to be a total of 28 of us vacationing together for a week (divided in 4 homes).   Although we vacationed together last year and had a blast, the thought of it sent me in complete panic mode.  I have been isolating myself, avoiding big social scenes.  I couldn't handle myself, let along 28 people .

I so much wanted to stay home and just send Mike with the kids.  But deep down inside I told myself that I needed to go.  What would happen if next year I was sick again and couldn't go?  I knew how important it was to Mike and the kids.  I couldn't let them down.  I struggled for a couple of days, and then resorted to calling my doctor and getting back on my anti-depressant.  We went to Maine and had a great week.  The kids had a blast and I did have fun, especially on those fast tube rides.  When I became too overwhelmed I would just tell everyone that I was tired and went to bed early.  I am happy I decided to go, I wished that I could have enjoyed myself even more.  I guess I did the best I could do.

Last week when I was in for my monthly infusion I sat with Dr. H and the nurses and opened up to them.  They are so used to me coming in and seeing happy Jeanie telling them that everything was fine.  Well that day they got an ear full.  My favorite nurse Leslie held my hand, as her eyes filled with tears and told me that she expected this to happen.  She went on to say that some cancer patients go to therapy when they are first diagnosed and work on the mental stuff as well as undergo all their treatment.  Others like me, dive into beating down cancer with all of the chemo treatment and then expel their other energy keeping everything else in their life (ie: kids, house, marriage flowing).  So now comes the mental baggage with being a cancer patient with an incurable cancer.

I had tried therapy when I was first diagnosed, but it really didn't do much for me.  I am not sure if  the therapist was the right fit or what.  Or maybe it just wasn't my time.  I don't view therapy as a sign of weakness.  In fact, I find it to be a sign of strength.  I know I can't carry on keeping myself busy, trying to avoid at all costs any down time.  For me, the only down time I allow myself is at night.  And I know how well that goes for me.  Not!  Hence the insomnia and my nightly dose of Ativan.

So in two days it will be my 42nd birthday. Cheers to me.  A couple of years ago I never thought I would be here today.   I have decided to give myself the gift of me.  That means the good, the bad and the ugly.  It is time for me to finally do the dirty work of digging deep and facing my fears.  This time around, it is not training to complete a marathon, but rather, explore all the hidden crap of fear, sadness and anger.  I am so so tired of this in-between life.  For those of you who know me, but don't want to ask me how I'm doing.  Now you know.  Not so great.  I  struggle with this "new life" of being a survivor everyday.  So please forgive me for putting up a wall around me and not staying in touch.  I miss being engaged in life socially, trust me.  But I guess until you walked in my shoes, you really don't know.  There is no manual on how to get to try to get back that life you once had.  I know that cancer will always be a part of me.  I didn't ask for it, but it's here.  I don't want it to define me, or limit me, more than it has to.  It has sucked way too much out of me physically and emotionally and it is really starting to annoy me.

So stay tuned.  I'm hoping to start shedding a little more light in my life.

For all my Myeloma friends, I usually I take my Revlimid and Dex in the morning.  I held off and took them tonight.  I'm hoping this means I'll be be able to actually get some sleep. We shall see!

Sweet Dreams-
Jeanie

Brock's Ice Cream Parlor-Blast From My Past

To contact us Click HERE
Wednesday, June 25, 2008

Today the Cancer Center seemed to be having some scheduling issues, I think the machine was "down" and needed some repairs.  So after rescheduling us twice we finally made it over there around 3pm.  It screwed up my day a bit with plans to go to the grocery store and make dinner for everyone and so on.  But like many plans that go awry, something cool and wonderful occurs.

Since the day was shot, on our way home we stopped at Brock's Ice Cream parlor in Yuba City.  Long before Baskin Robbins 31 Flavors, for me, there was Brock's Ice Cream.  When we lived at Beale AFB, we would come to town a couple times a year for school shoes and clothes.  It was a BIG DEAL for my sister and I and the best part was always stopping at Brock's for a cone!  I couldn't believe it was still around and except for a small change on the interior to accommodate folks to sit inside, it had not changed a bit.  They make their own ice cream and it is wonderful.  It brought back such wonderful pleasure moments for me - in the midst of the tornado, it was a lovely respite.  Not too mention getting to share a childhood experience with my husband.

When Dan got home, I did manage to get to the grocery store and make some Beef 'n Barley Stew.

If you find yourself going through difficult times, whatever it is, don't underestimate the value of small joys like this.  Its an old story... we take these things for granted.  Well maybe we do, but maybe we are lucky enough to not have a reason to view them in a deeper way.  I don't know... its an interesting and old concept.  But I will say, it had a dual meaning for me.  I used to go there with my father and thinking of him always makes me smile.  Now, here I was, in a little ice cream place sharing it with Dave in the middle of our crisis, and both he and I had a moment, just a moment, of something pleasurable and peaceful, mundane, normal.  I have found that these "little" things really can recharge me and sustain me.  When my mother was dying, at my home, and my life gradually and appropriately got smaller and smaller as her needs got greater and greater, I would sit out on my stoop in the backyard with a cup of coffee on a sunny morning and watch the squirrel antics, the birds at the feeder and the baby fox romping around on their way back to the den.  I found it filled me up somehow and gave me the strength to easily and fully enjoy my mother's company and care for her as she deteriorated.  It can all be such a mishmash really.  But I felt very strongly it was important for me to embrace the small beautiful things in the world - it uplifted me somehow, and that viewpoint was serving me well now with Dave.  It was familiar to me and something to share with Dave.

I'm In Remission, So What's Wrong?

To contact us Click HERE
I cannot believe how many times I have wanted to sit behind my laptop and write.  This blog began for me as a great way to share with friends and family on my progress, to reach out to those affected by Myeloma, and lastly if I am being completely honest, a free source of therapy for me.  Yet time and time again I seem to find excuses for not writing.  Some days while at the lake with my kids  or while I am out watering my garden, thoughts and sometimes entire blog posts will enter my mind .  Yet, I never take the time to write or type them.  So lately I've questioned myself why I stopped.  And I guess it's because writing for me has always been about being honest and open.  And lately, that is becoming more and more difficult to do.

It easier to get up each day, and stay busy entertaining the kids, running errands, trying to keep up with the garden and lawn (which is pretty pathetic now thanks to the lack of rain), keeping up with my recent obsession with Pinterest and my new found love for restoring furniture, choosing new paint colors for every room in my house, and whatever else I keep my mind busy doing,  than it is to stop and reflect about what is really going on with me.

I feel like lately I am stuck in a temporary in-between stage.   Although I am considered "in remission", I am still on a maintenance regimen consisting of Revlimid and Dexamethasone 3 weeks out of every month, and I have monthly infusions,    My hair is slowly growing out ( I can actually make a tiny ponytail), and I have regained some of the loss muscle and weight back.  To most people I must look healthy and like life is back to normal.  In fact, most people no longer ask how I am doing.  Maybe they are afraid to ask, or just assume that is everything is fine.  Honestly, it feels good to no longer receive the gloom and sad looks I was used to receiving a couple years ago as a sick cancer patient and mother of four young children.

So what's the problem?  I know right?  That is what I keep asking myself.  Well, for those of us who read up on Myeloma daily, we know that this disease is still incurable.  That it really does not go truly in remission.  Up until a few years ago a 3 year life expectancy was the best one would have.  Fortunately with Revimid patients are living longer.  The goal is to keep it at bay for as long as possible with the hopes that when I do relapse, my body will respond to the therapy.  And if it doesn't,  hopefully a new treatment is available. Ultimately, however the Myeloma usually wins the battle.    Daily, I Google Myeloma and read up on every little piece of new news that is published.  Of course what also pops up are far too many obituaries of Myeloma patients who have lost their battle.  I follow many blogs from Myeloma bloggers and although many of their stories inspire me, there are also several that write about their struggles with relapsing.

Although I try not to think about if and when I relapse, it of course enters my mind often especially during the late hours of the night.  So although I am so very blessed to be "in remission", it is challenging at times knowing I have a ticking time bomb inside.

 Running used to help me through some of those challenging moments.  I felt strong running, almost invincible.  Crossing the finish line at The Boston Marathon was so powerful.  I had so many doubts in my mind, even putting aside the extreme of that heat that day. For well over 6 or 7 months I have watch my endurance decrease.  My body screams at me when I have passed the threshold.  Whether it is the long term effects from being on Revlimid or perhaps the disease itself, the bottom line, my body has changed.  Lately I haven't even had the desire to get out there and run, let alone hit the gym.  I know the endorphins I get from exercise help, and that my body needs to stay strong, so why aren't I out there doing it?  At the same time, Mike is training for his first marathon this fall.  This should also motivate me.  But no.  I am crazy proud of him, but I really don't feel the need or desire to join him.  What the hell is wrong with me?

 Sometimes I feel like the days pass and I can't feel passionate about much.    Also as I mentioned, my energy has been pretty low as well.  I know that a lot of that is side effects of the Revlimid and the lack of sleep due to the steroid and just being a busy mom.  But I was desperate for some change.

 A couple of months ago I talked with Dr. H about slowly coming off my anti-depressant.  I had been on a couple different drugs since my diagnosis.  I ended up staying on Effexor which also has an added benefit of helping out with the hot flashes from being put in menapause.  But the past few months I realized more and more that I was beginning to feel like I was going through the motions in life.   I don't ever really feel like I can be really happy or sad for that matter. Also my energy has felt like it has been zapped.  So after reading up on all the different side effects of Effexor, I thought I would try coming off of it and see if I felt any different,

Well the first week pretty much sucked.  My head was in a constant cloud.  I had dizzy spells and felt like my brain was buzzing.  I had a new found respect for anyone going through drug withdrawals.  Day after day I waited for that to subside.  It finally did after about 5 days.  Then it was the tears.  Once the floodgates were opened they just wouldn't stop.    This was right around the same time of Marty's ride that I previously posted.  It was such an inspirational  day.  It was a day full of emotion.  When we got home that night from Maine, my son Mitch knocked at my bedroom door.  He just looked at me with tears in his eyes and told me he was really sad. He said to me "I guess you are one of the few lucky ones who is living".  Gulp!  Yup, you try looking in your 11 year old son's eyes and come up with a quick response to that one.  I just held him and cried and said "Yes I am".

Mike and I were up late that evening on the patio.  Basically him trying to console me.  As always he stayed strong and tried to pick up all the pieces to put me back together again.

From that teary moment there came many many more.  In fact, I couldn't hide the tears from the kids.  It reminded me so much of those first few weeks after I was diagnosed.  One look at the kids and my eyes filled up.  Wow maybe I really didn't need to be thrown into reality?  Maybe it was good to be numb.  Well after a few days of tears, I turned into bitchy mom who had no grip on life.  My poor kids and Mike.  I didn't even get like this when I was on the higher doses of Dex a couple of years ago.

To top it off we were heading to Maine to spend a week with our closest friends and their kids.  There was going to be a total of 28 of us vacationing together for a week (divided in 4 homes).   Although we vacationed together last year and had a blast, the thought of it sent me in complete panic mode.  I have been isolating myself, avoiding big social scenes.  I couldn't handle myself, let along 28 people .

I so much wanted to stay home and just send Mike with the kids.  But deep down inside I told myself that I needed to go.  What would happen if next year I was sick again and couldn't go?  I knew how important it was to Mike and the kids.  I couldn't let them down.  I struggled for a couple of days, and then resorted to calling my doctor and getting back on my anti-depressant.  We went to Maine and had a great week.  The kids had a blast and I did have fun, especially on those fast tube rides.  When I became too overwhelmed I would just tell everyone that I was tired and went to bed early.  I am happy I decided to go, I wished that I could have enjoyed myself even more.  I guess I did the best I could do.

Last week when I was in for my monthly infusion I sat with Dr. H and the nurses and opened up to them.  They are so used to me coming in and seeing happy Jeanie telling them that everything was fine.  Well that day they got an ear full.  My favorite nurse Leslie held my hand, as her eyes filled with tears and told me that she expected this to happen.  She went on to say that some cancer patients go to therapy when they are first diagnosed and work on the mental stuff as well as undergo all their treatment.  Others like me, dive into beating down cancer with all of the chemo treatment and then expel their other energy keeping everything else in their life (ie: kids, house, marriage flowing).  So now comes the mental baggage with being a cancer patient with an incurable cancer.

I had tried therapy when I was first diagnosed, but it really didn't do much for me.  I am not sure if  the therapist was the right fit or what.  Or maybe it just wasn't my time.  I don't view therapy as a sign of weakness.  In fact, I find it to be a sign of strength.  I know I can't carry on keeping myself busy, trying to avoid at all costs any down time.  For me, the only down time I allow myself is at night.  And I know how well that goes for me.  Not!  Hence the insomnia and my nightly dose of Ativan.

So in two days it will be my 42nd birthday. Cheers to me.  A couple of years ago I never thought I would be here today.   I have decided to give myself the gift of me.  That means the good, the bad and the ugly.  It is time for me to finally do the dirty work of digging deep and facing my fears.  This time around, it is not training to complete a marathon, but rather, explore all the hidden crap of fear, sadness and anger.  I am so so tired of this in-between life.  For those of you who know me, but don't want to ask me how I'm doing.  Now you know.  Not so great.  I  struggle with this "new life" of being a survivor everyday.  So please forgive me for putting up a wall around me and not staying in touch.  I miss being engaged in life socially, trust me.  But I guess until you walked in my shoes, you really don't know.  There is no manual on how to get to try to get back that life you once had.  I know that cancer will always be a part of me.  I didn't ask for it, but it's here.  I don't want it to define me, or limit me, more than it has to.  It has sucked way too much out of me physically and emotionally and it is really starting to annoy me.

So stay tuned.  I'm hoping to start shedding a little more light in my life.

For all my Myeloma friends, I usually I take my Revlimid and Dex in the morning.  I held off and took them tonight.  I'm hoping this means I'll be be able to actually get some sleep. We shall see!

Sweet Dreams-
Jeanie

I need your help again…

To contact us Click HERE

Thanks to all who took the time to “like” the My Cancer Store wall.  Next, I wondered if I could ask our long-lived myeloma survivors to help me with a project I’m working on.  Let me explain.

A good friend of mine, author Dave Visel, is working on an ambitious myeloma related project.  Dave wrote a practical guide for cancer survivors called Living with Cancer in 2006.  Dave called and interviewed me three years ago for his latest book, The Diagnosis Is Myeloma.  Now What?

Dave was co-writing the book with endocrinologist and multiple myeloma patient, Dr. Jim Tamkin.  I never had the opportunity to speak with Dr. Tamkin.  He died a few years back after living with bone cancer for eleven years.

Before he died, Dave and Jim started a foundation called the TBA Foundation.  “TBA” stands for “their best advice.”  You see, this project became bigger than just a book.  TBA is on it’s way to becoming a powerful force in the myeloma community.  Their goal: to help educate and empower myeloma patients and caregivers.

The Diagnosis Is Myeloma.  Now What? is the cornerstone of the TBA’s mission.  Designed to be the definitive handbook for newly diagnosed myeloma patients, the book will soon be published by Writer’s House in New York.

Dr. Tamkin and Dave have done their homework.  I have spoken with Dave and his capable assistant, Anita Chambers, dozens of times.  This fall, Dave took the time to shadow me and listen to me speak to several myeloma support groups in Southern California.

Although Dave is not a myeloma patient himself, he is the caregiver for his wife, Karen, a lymphoma survivor.  Dave is dedicated to our cause.  Like me, Dave believes it is important for myeloma patients and caregivers to educate themselves so that they can form effective health care teams.  And like me, Dave feels strongly that our books need to be available to those who don’t use computers regularly.  That’s one reason the TBA Foundation was formed.  To help pay to place a book in every public library in America.  That’s 60,000 books!

Over one hundred myeloma patients, caregivers and experts have contributed to the book so far, including prominent names like Dr. Ken Anderson and Dr. Robert Kyle.

And I’m pleased to announce that Dave thinks enough of my voice to enlist my help as well.  I will be writing the final chapter of the book–and incredible honor.

I shared with Dave how important I felt it is to leave his newly diagnosed patient readers feeling energized and hopeful.  This is why I need your help.  I would like to feature the voices of a number of long-lived myeloma survivors in the last chapter.

It’s an arbitrary number, but I would like any of you that have survived eight years or longer to share your answers to the following questions:

1)  What do you wish you knew when you were first diagnosed with multiple myeloma

AND

2)  Are there any thoughts or tips you could share with your newly diagnosed brothers and sisters?

Your response doesn’t need to be long.  As a matter of fact, short is better!  Simply email me: pat@helpwithcancer.org.  Please include your full name, where you live and the year you were diagnosed.

One more thing.  Here’s something else that Dave and I have in common.  We both feel it is vitally important to try and reach more myeloma patients and caregivers of color.  So if you are Hispanic or African American, could you please let me know that, too?

I have read the transcript.  The book is very good!  It is direct and comprehensive.  Once we add this last affirming chapter, the book will feature just about anything and everything new myeloma patients, caregivers and family members need to know.

CLICK HERE to access TBA’s website.  Thanks in advance for your help!

Feel good and keep smiling!  Pat

 

 

Dr. James Berenson to discuss therapy options without using transplants

To contact us Click HERE

Dr. James Berenson, will be answering questions during our monthly Myeloma Cure Panel discussion this evening.

As we all know, technology isn’t always perfect.  So unfortunately, only 50 patients and caregivers can listen to the 6 PM discussion live.  And those slots are full.

BUT, the good news is a link to the broadcast will be available soon thereafter, hopefully Friday.  I will pass-along a link so you can listen to the recorded version.

It may be for the best, because there are already more questions logged than the good doctor can answer!  And I know I plan to toss Dr. Berenson a bit of a curve ball.  I’m sure we will run out of time.  An hour can fly-by so fast!

UPDATES: November 29th Myeloma Cure Panel Talk Show Overbooked, Thanks All For Your Support and Take a Peek at the Questions to be Discussed

The Cure Panel Talk Show featuring Dr. James R. Berenson from IMBCR is completely booked. We thank everyone who has supported us and look forward to an informative and interactive web panel discussion with Dr. Berenson and the panelists on the topic: Myeloma Treatment without Transplant.

We continue to receive myeloma questions from our panelists and registered participants. Here is a peek view at some of the questions that will be discussed in the Cure Panel Talk Show on 29^th November at 6pm EST:

1. For a long time you have not favored transplant and are definitely in the “Less is Best” or “Quality of life” corner of the treatment continuum. For a long time it had appeared that the thinking was trending toward this philosophy, however recently I see momentum moving toward “More is Best” or “the aggressive approach”. As it is now, your program has shown outstanding results, with the best 5 year survival rate yet reported on myelomasurvival.com. What is your treatment philosophy now for the typical low risk patient, and are you having any second thoughts about transplant?
2. Some 10 years ago, in the era before the new novel agents you have shown a 16 year observed survival rate(includes all deaths) of nearly 40%. The average life expectancy of the average American at age 70(which is the average age of a myeloma patient) is 16 years. Which means the observed survival rate is 50%. This means you are within 10% percentage points of having patients live as long as the average American. This is truly remarkable! So with new novel drugs, do you think your current patients are going to live as long or even outlive the average American, and if so would this not be as good as a cure?
3. For the 15% of high risk patients, no one seems to have found the right treatment plan for this subset of patients. Have you had any success in this area and do you see any breakthroughs in high risk treatment.
4. Last year in Blood the Spanish MM group reported “The relapse rate is low in transplant patients with >11 years of follow-up, possibly signifying a cure for patients in CR.”  An ASCO 2011 (Rossi, et al) study reports that Progression-Free Survival is not affected by Transplant after Revlimid. How is a patient to decide whether or not to consider transplant as a treatment option?Last year at ASH, a UK study showed that Zometa has an anti-myeloma effect (perhaps a 4-5 month survival improvement).  As a long-time investigator of Aredia and now Zometa, do you agree with these findings?  And along these lines, what’s your protocol for prescribing Zometa…e.g. monthly for 1-2 yrs, then every 3 mos if patient still symptomatic or stop usage; use indefinitely; something else?
5. Which salvage therapies have worked best for you?  
6. Do you have a “typical” first treatment, e.g. Rd, RVd?  How might Carfilzomib and Pomolidomide (when approved) change this when both are available for newly diagnosed patients? 
7. What sort of results are you seeing with carfilzomib? Is it solely being used for relapsed or refactory patients or also newly diagnosed patients? 
8. With your research,  what are you seeing in terms of a cure or new form of treatment? 
9. Also with regard to your research,  do you spend any time looking at the cause of myeloma..such as genetics or exposure to certain toxins? 
10. What does Dr. Berenson think of CRD–carfilzomib/revlimid/dex–for newly diagnosed. I am currently in the CRD trial at the NIH. It is similar to Dr. Jakubowiak’s Michigan CRD trial which had excellent results. 
11. I was diagnosed with IgD/Kappa MM in June. It is considered to be a rare form of MM. I would like to know what are the treatments, complications, and prognosis for this disease. 
12. I was diagnosed with multiple myeloma in August 2012. I have been on Valcade, dex, thalamid (which was recently changed to Revlimid).  My numbers are coming down and I am expected to be at remission levels sometime around New Year January 2013.  I have struggled on Chemo and getting infections that put me in hospital. I have been extremely healthy my whole life.  I had gastric bypass surgery in 2002 and lost 120 pounds and felt great! Until the build up to this myeloma diagnosis. I live in Little Rock and everyone (including my oncologist) wants me to have stem cell transplant at UAMS. I am very afraid my body can not withstand the treatment.  I have been so sick already.  I need to research other options. I am a sales rep and I don’t know what other options will allow me to live a fairly normal life.  Any thoughts? 
13. Watching football this season.  Players are out of the game with broken arms, ribs, hands, collar bones, etc.  Three weeks later they are back playing again.  What do these guys take for bone healing and bone strength, and is there something we should be taking in addition to zometa or aridea?  I get mixed answers on calcium and what type of calcium to take. 
14. For the sequential minimalist “Less is Best” or “Quality of Life”  approach of Dr. Berenson, what treatment plans does he use, i.e. what are the specific therapy drugs? 
15. Also, since I have not yet had a stem cell transplant, though this has been presented as the next step in my treatment, after about March 10, 2013, please discuss specifically how you (Dr. Berenson) feel the stem cell transplant reduces one’s quality of life.

Dr. Berenson’s appearance timing is ironic, considering the Myeloma Beacon ran results from a study yesterday reaffirming the value of using an auto SCT as possible salvage therapy.  My favorite thing about Dr. Berenson is his candor.  You may not always agree with him, but he isn’t afraid to tell you his opinion.

It should be an interesting ASH this year!  I will be leaving for Atlanta a week from today.  Meetings start first thing Friday morning.  Better rest-up!  My cold is almost gone–thank God!  Now I need to adjust to adding dex to my Revlimid/Velcade therapy mix.  It’s always something, right?

Feel good and keep smiling!  Pat

It's been two tough months

To contact us Click HERE
April/May 2010 have been 2 tough months for me in my myeloma journey.
Myeloma returned back to me last year with a relapse. Treatment failed to put me into a plateau stage, my hopes lay in new treatment available in a clinical trial.
Qualifying for the trial became the easy part, getting through 2 setbacks to commence the trial was more of a challenge. My trial started with one day to spare.
May bought with it the passing on of 4 myeloma friends, 2 bloggers and 2 local myeloma friends. There may have been more bloggers while I was in hospital.
One myeloma friend in particular left me grieving deeply. A 6 year myeloma friendship is difficult to end.

All is not lost, it is now 9 years since my initial diagnose with prognosis at that time of 3 to 5 years. My positive attitude, pro-active stance, interest in gaining myeloma knowledge and being willing to fight for myself remain. I will never give up. The love and support from my wife Myra has been huge, could not have got to where I am with out it.
With myeloma being a series of treatment and plateau I have always tried to get back to “normal” after treatment as soon as possible, living a normal life with myeloma pushed into the background.
There are now new generation treatments not previously available to me, combinations of old and new treatments and stem cell transplants giving us longer plateau periods along with trials for more new treatments underway now.
New treatments not available to me in 2001 include Thalidomide (Thalomid), Bortezomib (Valcade) and Lenalidomide (Revlimid).
Unfortunately Bortezomib and Lenalidomide are still not available in New Zealand through our public health funding service Pharmac.
Support for frontline treatment, relapsed disease, clinical trials and supportive care is far more advanced now.
The future looks promising, the search for a cure continues.

Since beginning blogging 18 months ago I have found a new source of help and inspiration, an international family of myeloma support on the internet. To all you folks who read blogs, comment or email to myself and other bloggers a very big thank you.

Links:
Revlite clinical trial
Coping with death of a myeloma friend
Treatment example
Pharmac

Brock's Ice Cream Parlor-Blast From My Past

To contact us Click HERE
Wednesday, June 25, 2008

Today the Cancer Center seemed to be having some scheduling issues, I think the machine was "down" and needed some repairs.  So after rescheduling us twice we finally made it over there around 3pm.  It screwed up my day a bit with plans to go to the grocery store and make dinner for everyone and so on.  But like many plans that go awry, something cool and wonderful occurs.

Since the day was shot, on our way home we stopped at Brock's Ice Cream parlor in Yuba City.  Long before Baskin Robbins 31 Flavors, for me, there was Brock's Ice Cream.  When we lived at Beale AFB, we would come to town a couple times a year for school shoes and clothes.  It was a BIG DEAL for my sister and I and the best part was always stopping at Brock's for a cone!  I couldn't believe it was still around and except for a small change on the interior to accommodate folks to sit inside, it had not changed a bit.  They make their own ice cream and it is wonderful.  It brought back such wonderful pleasure moments for me - in the midst of the tornado, it was a lovely respite.  Not too mention getting to share a childhood experience with my husband.

When Dan got home, I did manage to get to the grocery store and make some Beef 'n Barley Stew.

If you find yourself going through difficult times, whatever it is, don't underestimate the value of small joys like this.  Its an old story... we take these things for granted.  Well maybe we do, but maybe we are lucky enough to not have a reason to view them in a deeper way.  I don't know... its an interesting and old concept.  But I will say, it had a dual meaning for me.  I used to go there with my father and thinking of him always makes me smile.  Now, here I was, in a little ice cream place sharing it with Dave in the middle of our crisis, and both he and I had a moment, just a moment, of something pleasurable and peaceful, mundane, normal.  I have found that these "little" things really can recharge me and sustain me.  When my mother was dying, at my home, and my life gradually and appropriately got smaller and smaller as her needs got greater and greater, I would sit out on my stoop in the backyard with a cup of coffee on a sunny morning and watch the squirrel antics, the birds at the feeder and the baby fox romping around on their way back to the den.  I found it filled me up somehow and gave me the strength to easily and fully enjoy my mother's company and care for her as she deteriorated.  It can all be such a mishmash really.  But I felt very strongly it was important for me to embrace the small beautiful things in the world - it uplifted me somehow, and that viewpoint was serving me well now with Dave.  It was familiar to me and something to share with Dave.

Another Special Mother's Day

To contact us Click HERE
It's been way too long since I last posted a blog.  Life has gotten busy!  Which is a good thing.  Most of our free time these days are spent on the soccer and baseball fields.  I feel like I am being pulled in a million different directions.  Every night I plan on sitting down to write, but  usually collapse on the couch and fall asleep!

Well, tomorrow is the big day.  Mike and I are competing in a Mother's Day Sprint Triathlon in Sudbury, MA!  Before I went into the hospital in November before my transplant, Mike wanted to make sure that we both had something BIG to look forward to and to strive for.  So he registered us for the triathlon.  I had participated in it last year.  Swimming is definitely not my strength but the race itself was so exhilarating.  Just being surrounded by so many people (of all shapes and sizes) all participating in the same event.  It is amazing to be there and especially to be a part of something so great.  For so many it has been a fitness goal or on their bucket list, for others, it is a training triathlon for a bigger race in the future.  I can remember last year Mike telling me that he had no desire to  do one.  And now today, he has gotten in the best shape of his life, he has become a great runner and he has been swimming for the last 12 weeks.  I am so proud of him.   I know initially he signed up for me, but you know what, he really is excited about doing it!  
I have not physically trained for this race all that much.  Although my running is stronger than ever, Thursday was my first time in the pool since last year.  I managed to swim the 16 laps necessary for tomorrow.  It is not pretty and not fast, but I can get from point A to point B.  Yesterday Mike, my friend Shayna and I did a brick. We did a 9 1/2 mile ride followed by a 2 1/2 mile run.  I forgot how challenging the transition is from riding to running. My legs felt like tree trunks!  
It's funny I can feel the anxiety from many of my friends doing the race tomorrow.  And all of them have been training for it.  I am probably the one who is least prepared for it!  Yet  I am so excited to do it.  You see, it is coming up on my one year anniversary since I was diagnosed with Multiple Myeloma.  Last year at this time I was still struggling with a healing sternum and I had a strange bump on my chest which was later confirmed to be a plasmacytoma.  I can remember swimming in the last triathlon and struggling with the pain in my sternum.  Little did I know what was really going on with me.  The fact that it is one year later, a stem cell transplant later..... I can't freaking believe it!!  In the last year I have felt so close to death.  I honestly was doubting whether or not I was going to make it to see my kids begin school last September, let alone be running again or participating in a Triathlon!
As I explained to Mike on the soccer field this morning, I feel like I need to pinch myself everyday.  I feel so happy and so incredibly blessed for how my life is today.  It's funny so many people tell me that I should move on.  That last year was last year and this is now.  But you know what?  Every day I do reflect about the past year.  But I also think of where I am today.  I feel stronger than ever.  In fact I am up to running 10 miles!  I think reflecting on the last year helps me really appreciate today and how lucky I feel and how happy I am.  As we all know today is all we have.  Life can change on a dime as I have experienced firsthand.  So everyday I feel great, I get out there and run and enjoy it fully.  I beat this cancer this time and I only plan on getting stronger from this point.  So when it tries to attack again I'm ready to put up a good fight!
As I was running the other day, reflecting on all that has happened, a special person came to mind, Kathy Giusti, Multiple Myeloma Survivor and founder of the Multiple Myeloma Research Foundation, MMRF.  Kathy was diagnosed in 1996 and at the time was told that she only had 3 years to live.  Today she is still in a "Complete Response".  I am so grateful for all of her efforts with the MMRF.  The MMRF has played such a big role in bringing four new treatments for myeloma in the past four years.  These treatments, now the standard of care for multiple myeloma patients  have helped to almost double the life expectancy among some patients.   Kathy Giusti was just recently named one of Time Magazine World's 100 Most Influential People.  Tomorrow I am dedicating my race to Kathy Giusti.    I feel strongly that I am here today largely because of her efforts.  It is my way of thanking her for all that she has done for the Multiple Myeloma World.  Her strength and perseverance to be there for her daughters, her refusal to give up hope,  and her dedication to finding a cure, has truly been such an inspiration for me.  So on this Mother's Day, I will be thinking of one very special woman.   Kathy, as I am struggling in the pool swimming my last lap, pedaling to the transition area, and running to the finish line,  I will be thinking of you!
Happy Mother's Day to all the mom's out there.  To my mom, I love you and miss you so much and I am counting the days until you and dad come out to visit!
Love-Jeanie

Let's Hear It For Marty And His Cure For Cancer Tour!

To contact us Click HERE

Tomorrow morning we will be all leaving the house early to cheer on Marty Perlmutter who has traveled on a 1,400 bike journey from Jacksonville, Florida to York, Maine.  He is riding to honor his best friend, Roy Gross, who lost his battle with Multiple Myeloma in March, 2012.  Marty has set a goal to raise $20,000 for the Multiple Myeloma Research Foundation.

Marty is staying in Nashua, NH tonight after traveling 100 long hot miles today.  Tomorrow morning my husband Mike will be joining Marty, as he completes his journey to Maine.  Mike was so inspired by Marty and asked if he could join him for a few miles. During the last couple of years, Mike has taken up cycling.  He has participated in several sprint triathlons and charity rides.   After talking with him, Mike convinced himself to ride the 80 plus miles with Marty tomorrow.  This will be Mike's longest ride to date.   I am so overwhelmed with love and pride for my Mikey.  There truly exists nothing that man will not do to support me.  As I sit to write this blog, my eyes are filled with tears.  He is the hardest working man I know, yet he always makes his family a priority in his life.  And now he is going above and beyond riding along with Marty supporting the fight against Multiple Myeloma.  Everyday Mike shows me how determined he is to support me in every way to continue to fight this crappy disease that robs the lives of so many people everyday, like Marty's best friend Roy.  I don't know how I got so lucky that June '92 back in UNH!  Mikey, you are my one and only one and you continue to give me butterflies everyday!


I will be sure to take lots of photos tomorrow.  The kids have packed up our cow bells, pom poms and signs.  We will all be leaving early tomorrow morning to give them a fun send off as they hit the pavement.  Of course, then the kids and I will go home and chill for about 4 hours and we will travel to York to see them get to the finish line at the beautiful Nubble Light in York, Maine!s


If you would like to view Marty's blog please click on the link below:
2012rideforcancer.blogspot.com   

Also Marty's web page for donations is:
www.active.com/donate/2012mmrfYor/MartyCure

I'm In Remission, So What's Wrong?

To contact us Click HERE
I cannot believe how many times I have wanted to sit behind my laptop and write.  This blog began for me as a great way to share with friends and family on my progress, to reach out to those affected by Myeloma, and lastly if I am being completely honest, a free source of therapy for me.  Yet time and time again I seem to find excuses for not writing.  Some days while at the lake with my kids  or while I am out watering my garden, thoughts and sometimes entire blog posts will enter my mind .  Yet, I never take the time to write or type them.  So lately I've questioned myself why I stopped.  And I guess it's because writing for me has always been about being honest and open.  And lately, that is becoming more and more difficult to do.

It easier to get up each day, and stay busy entertaining the kids, running errands, trying to keep up with the garden and lawn (which is pretty pathetic now thanks to the lack of rain), keeping up with my recent obsession with Pinterest and my new found love for restoring furniture, choosing new paint colors for every room in my house, and whatever else I keep my mind busy doing,  than it is to stop and reflect about what is really going on with me.

I feel like lately I am stuck in a temporary in-between stage.   Although I am considered "in remission", I am still on a maintenance regimen consisting of Revlimid and Dexamethasone 3 weeks out of every month, and I have monthly infusions,    My hair is slowly growing out ( I can actually make a tiny ponytail), and I have regained some of the loss muscle and weight back.  To most people I must look healthy and like life is back to normal.  In fact, most people no longer ask how I am doing.  Maybe they are afraid to ask, or just assume that is everything is fine.  Honestly, it feels good to no longer receive the gloom and sad looks I was used to receiving a couple years ago as a sick cancer patient and mother of four young children.

So what's the problem?  I know right?  That is what I keep asking myself.  Well, for those of us who read up on Myeloma daily, we know that this disease is still incurable.  That it really does not go truly in remission.  Up until a few years ago a 3 year life expectancy was the best one would have.  Fortunately with Revimid patients are living longer.  The goal is to keep it at bay for as long as possible with the hopes that when I do relapse, my body will respond to the therapy.  And if it doesn't,  hopefully a new treatment is available. Ultimately, however the Myeloma usually wins the battle.    Daily, I Google Myeloma and read up on every little piece of new news that is published.  Of course what also pops up are far too many obituaries of Myeloma patients who have lost their battle.  I follow many blogs from Myeloma bloggers and although many of their stories inspire me, there are also several that write about their struggles with relapsing.

Although I try not to think about if and when I relapse, it of course enters my mind often especially during the late hours of the night.  So although I am so very blessed to be "in remission", it is challenging at times knowing I have a ticking time bomb inside.

 Running used to help me through some of those challenging moments.  I felt strong running, almost invincible.  Crossing the finish line at The Boston Marathon was so powerful.  I had so many doubts in my mind, even putting aside the extreme of that heat that day. For well over 6 or 7 months I have watch my endurance decrease.  My body screams at me when I have passed the threshold.  Whether it is the long term effects from being on Revlimid or perhaps the disease itself, the bottom line, my body has changed.  Lately I haven't even had the desire to get out there and run, let alone hit the gym.  I know the endorphins I get from exercise help, and that my body needs to stay strong, so why aren't I out there doing it?  At the same time, Mike is training for his first marathon this fall.  This should also motivate me.  But no.  I am crazy proud of him, but I really don't feel the need or desire to join him.  What the hell is wrong with me?

 Sometimes I feel like the days pass and I can't feel passionate about much.    Also as I mentioned, my energy has been pretty low as well.  I know that a lot of that is side effects of the Revlimid and the lack of sleep due to the steroid and just being a busy mom.  But I was desperate for some change.

 A couple of months ago I talked with Dr. H about slowly coming off my anti-depressant.  I had been on a couple different drugs since my diagnosis.  I ended up staying on Effexor which also has an added benefit of helping out with the hot flashes from being put in menapause.  But the past few months I realized more and more that I was beginning to feel like I was going through the motions in life.   I don't ever really feel like I can be really happy or sad for that matter. Also my energy has felt like it has been zapped.  So after reading up on all the different side effects of Effexor, I thought I would try coming off of it and see if I felt any different,

Well the first week pretty much sucked.  My head was in a constant cloud.  I had dizzy spells and felt like my brain was buzzing.  I had a new found respect for anyone going through drug withdrawals.  Day after day I waited for that to subside.  It finally did after about 5 days.  Then it was the tears.  Once the floodgates were opened they just wouldn't stop.    This was right around the same time of Marty's ride that I previously posted.  It was such an inspirational  day.  It was a day full of emotion.  When we got home that night from Maine, my son Mitch knocked at my bedroom door.  He just looked at me with tears in his eyes and told me he was really sad. He said to me "I guess you are one of the few lucky ones who is living".  Gulp!  Yup, you try looking in your 11 year old son's eyes and come up with a quick response to that one.  I just held him and cried and said "Yes I am".

Mike and I were up late that evening on the patio.  Basically him trying to console me.  As always he stayed strong and tried to pick up all the pieces to put me back together again.

From that teary moment there came many many more.  In fact, I couldn't hide the tears from the kids.  It reminded me so much of those first few weeks after I was diagnosed.  One look at the kids and my eyes filled up.  Wow maybe I really didn't need to be thrown into reality?  Maybe it was good to be numb.  Well after a few days of tears, I turned into bitchy mom who had no grip on life.  My poor kids and Mike.  I didn't even get like this when I was on the higher doses of Dex a couple of years ago.

To top it off we were heading to Maine to spend a week with our closest friends and their kids.  There was going to be a total of 28 of us vacationing together for a week (divided in 4 homes).   Although we vacationed together last year and had a blast, the thought of it sent me in complete panic mode.  I have been isolating myself, avoiding big social scenes.  I couldn't handle myself, let along 28 people .

I so much wanted to stay home and just send Mike with the kids.  But deep down inside I told myself that I needed to go.  What would happen if next year I was sick again and couldn't go?  I knew how important it was to Mike and the kids.  I couldn't let them down.  I struggled for a couple of days, and then resorted to calling my doctor and getting back on my anti-depressant.  We went to Maine and had a great week.  The kids had a blast and I did have fun, especially on those fast tube rides.  When I became too overwhelmed I would just tell everyone that I was tired and went to bed early.  I am happy I decided to go, I wished that I could have enjoyed myself even more.  I guess I did the best I could do.

Last week when I was in for my monthly infusion I sat with Dr. H and the nurses and opened up to them.  They are so used to me coming in and seeing happy Jeanie telling them that everything was fine.  Well that day they got an ear full.  My favorite nurse Leslie held my hand, as her eyes filled with tears and told me that she expected this to happen.  She went on to say that some cancer patients go to therapy when they are first diagnosed and work on the mental stuff as well as undergo all their treatment.  Others like me, dive into beating down cancer with all of the chemo treatment and then expel their other energy keeping everything else in their life (ie: kids, house, marriage flowing).  So now comes the mental baggage with being a cancer patient with an incurable cancer.

I had tried therapy when I was first diagnosed, but it really didn't do much for me.  I am not sure if  the therapist was the right fit or what.  Or maybe it just wasn't my time.  I don't view therapy as a sign of weakness.  In fact, I find it to be a sign of strength.  I know I can't carry on keeping myself busy, trying to avoid at all costs any down time.  For me, the only down time I allow myself is at night.  And I know how well that goes for me.  Not!  Hence the insomnia and my nightly dose of Ativan.

So in two days it will be my 42nd birthday. Cheers to me.  A couple of years ago I never thought I would be here today.   I have decided to give myself the gift of me.  That means the good, the bad and the ugly.  It is time for me to finally do the dirty work of digging deep and facing my fears.  This time around, it is not training to complete a marathon, but rather, explore all the hidden crap of fear, sadness and anger.  I am so so tired of this in-between life.  For those of you who know me, but don't want to ask me how I'm doing.  Now you know.  Not so great.  I  struggle with this "new life" of being a survivor everyday.  So please forgive me for putting up a wall around me and not staying in touch.  I miss being engaged in life socially, trust me.  But I guess until you walked in my shoes, you really don't know.  There is no manual on how to get to try to get back that life you once had.  I know that cancer will always be a part of me.  I didn't ask for it, but it's here.  I don't want it to define me, or limit me, more than it has to.  It has sucked way too much out of me physically and emotionally and it is really starting to annoy me.

So stay tuned.  I'm hoping to start shedding a little more light in my life.

For all my Myeloma friends, I usually I take my Revlimid and Dex in the morning.  I held off and took them tonight.  I'm hoping this means I'll be be able to actually get some sleep. We shall see!

Sweet Dreams-
Jeanie

Oh how I hate Ohio..

To contact us Click HERE
I was raised in a family where you don't use the h-word and we share that same value with our kids. BUT, on Saturday after my Wolverines fell to the undefeted Buckeyes, it seemed to be the only verb that could come close to describing the feeling in the pit of my stomach.
 
I know, I know…it’s only football and more so than ever itis over marketed and a gross sign that Americans have nothing better to do thancheer on 19 year old kids with a veracity that could solve world hunger 7 timesover.

 
The beautiful thing about this rivalry is it reminds me howtwo football foes make each other better given their shared goal to win achampionship. Through taking on the foe of Myeloma, some of my dearest friendswho are helping make me better and stay on track to kick cancer and dominate life are those whosaw nothing wrong with parading Jim Tressel around the field, as if he wasn’tthe reason that their 12-0 season means very little to ESPN college footballcommentators.
It is the passion these Buckeyes have for their team that I findthem transferring to other worthy causes that can make a monumental differencein lives of others. They will paint their face, drink their kool-aid and neverlose hope in their Buckeyes. It may annoy many of us who don’t understand how invested someonecan be in a sport they never played or a school they didn’t go to, but I havelearned to embrace that passion of some Buckeyes, who have had a deep impact on my life.
Below is one of my most memorable photos of the year. Itincludes my good friend Barb, a diehard Buckeye from Columbus, who’s motherpassed away with Multiple Myeloma this year. She paced me through the Chicagohalf marathon so I could reach my goal of finishing in 2 hours. Believe it or not,I crossed the line at 2 hours and 34 seconds. She not only has become a running coach of sorts for me, she has also raised close to $20,000 for cancer research at..guess where??...The University of Michigan Comprehensive Cancer Center of all places. She doesn't allow allegiance to her football team get in the way of advancing research towards a cure. She has been has faithful in myjourney as she is with her Buckeyes in the fall. For that, I am thankful.

Before I get targeted as a heretic by the Michiganfaithful, I will add that three of the people in the car are Michigan Alums whoalso ran the race with me and assisted me in my domination of the race. So the hatred for Ohio has in some cases turned to love, but I still think often about stiff arming Buckeyes.