Brock's Ice Cream Parlor-Blast From My Past

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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.

It's been two tough months

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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

Another Special Mother's Day

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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!

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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?

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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

Patient Snapshot: Richard’s stem cell transplant – Day 10

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Today I would like to give a shout-out to my good friend and the inspiration for my 4th book, Richard “Radar” Blustein.  Richard checked-in to Moffitt Cancer Center February 11th to undergo his first stem cell transplant.  While I was merrily celebrating my birthday, Richard was having a catheter surgically implanted in his chest so he would be ready for high dose chemotherapy later that evening.

Fortunately, Richard had already had his stem cells harvested, so he could get started right away.  Richard’s stem cells were infused back into his body February 13th.

As those of us who have undergone the procedure understand, this means his blood counts are at their lowest point now.  I was planning to visit him yesterday, but the staff was concerned about infection risk.  Hopefully I can see him next week.

In the meantime I want to wish Richard, his wife Susan, and his amazing daughters, Carly and Lisa–pictured here with her father–my best.  While walking our dog, Finnegan, this evening, Pattie stopped, turned around and said, “I’m sure Richard’s transplant is going to work!”  Call it a feeling.  Call it intuition.  All I can say is, “We’re pulling for you, Radar!”

Why Radar?  That’s the nickname I gave Richard, based on Radar O’Reily character in MASH.  Remember Radar?  He was ingenious at finding ways to help get things his unit needed without spending money.  That’s Richard!  His presentation to our support group, featuring a half dozen ways they could save money on their myeloma therapy, inspired my new book, Financial Aid for Myeloma Patients and Caregivers.

Richard was kind enough to pass-along his sources, and proudly explain how he had never paid a penny for his myeloma-related medical care.  Thanks to Richard’s suggestions, I was able to save thousands of dollars myself last year, including reimbursement of all my health care premiums.

Richard has had a copy of my second book, Stem Cell Transplants from a Patient’s Perspective, for months.  Reading tips from dozens of others that have traveled the same journey helps.  But I’m not sure anything can prepare you for how it feels to have your white and platelet counts crash to near zero.

It only gets better from here, good friend!  I remember how hard and discouraging it was around day ten.  But my counts started to recover day twelve.  I started to feel better almost overnight.  Try to eat something, hydrate, get up and get walking!  YOU CAN DO THIS!

Feel good and keep smiling!  Pat

 

Let’s hear from our readers!

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Today I would like to pass-along a reader question, along with an update from John Knighten out in Seattle, who was preparing for this week’s first of two back-to-back stem cell transplants.  Let’s start with Sara from North Carolina.  Sara has a question about Revlimid and possible liver damage:

Hi Pat,

Just wondering if you’ve ever had high liver values, specifically transaminase, AST and ALT, while taking Revlimid. I was on 25 mg for almost a year and have been on 10mg for over a year now and these values are very high…

Imagine my surprise when I came home and looked at the package insert for Revlimid. It listed hepatotoxicity, specifically transaminase abnormalities. The package insert says to discontinue the drug until values come down and try to start again, but I’m not one of those people that can take a drug holiday.   I went off Revlimid for 3 weeks when I had back surgery in September and the numbers shot up a lot. M spike went over 3.0 for the first time ever. I’ve never heard of anyone in our support group report this problem while on Revlimid, and just wondered if you’ve ever experienced this?

I emailed Sara that no, I wasn’t familiar with this potentially serious side effect, that I’ve never paid attention to my liver numbers–adding that I hoped my doctors have!

Have any of you ever experienced elevated liver numbers while using Revlimid?  After using it myself for the better part of six years, nothing would surprise me.

Next, here’s an update from our old friend, Patient Snapshot star John Knighten.  I have been sharing John’s remarkable story ever since I met him early last fall in Spokane, Washington.  Here are links to those featured posts:

Patient Snapshot: 44 year old John Knighten

Patient Snapshot: 44 year old John Knighten (Part Two)

Patient Snapshot Update: Our friend John

Another Patient Snapshot Update about John in Spokane

Hard-core tips for PN sufferers and inspirational update 

John emailed me about how he was doing earlier this week, along with a few new pictures:

Hi Pat,

It’s been a little bit since my last update, mainly because there has not been too much to report.  We finished up the majority of the routine testing last week, but Dr. Holmberg was concerned about a sample of spinal fluid that came back with some abnormal cells.  We were sent to a Neuro Oncologist to look over my labs.  He saw no reason for chemo direct into the CSF and would clear me for transplant.

Tomorrow I am due to receive the dose of melphalan to get the party started for the auto transplant.  I’ll get Monday off then receive my stem cells on Tuesday the 19th which happens to be my 45^th birthday.  Let’s hope Seattle has kept good care of my stem cells in their freezer for the past 2 ½ years!   If things go well, the donor allogeneic should be 4-6 weeks away.  I sailed through my first auto and hope to be outpatient throughout again.  We are still waiting to see which of my brothers will be the donor.

It hasn’t been all work and testing for us since we arrived in Seattle.   After a couple weeks at the SCCA house (motel style), we got word of a vacancy at the Pete Gross House, patient housing owned by the Fred Hutchinson research center.  We stayed here last time and the extra privacy and room were nice.  Now we have room for the girls to visit and when family members come to relieve Shawna as caregiver they’ll have their own room.

We’ve had a chance to get out and visit with friends in the area, even my old school buddy and room mate Chris Tumblin.  We grew up together from grade school and he was my first roommate after high school before I joined the Marine Corps.  We have not had a chance to get together for 20 years and finally got together for dinner last week.  He lives on Whidbey Island in the Puget Sound, just a short ferry ride away.  He claims he knows all the great fishing and crabbing spots in the Sound so I’m looking forward to sneaking out for some fishing during my time out here.  So far Shawna has shot down my attempts to buy a bigger boat, but at least she’s willing to let me bring my boat over from Spokane.  It will be nice to have my refuge on the water close by.  Hope you are doing well.  Take care, John.

John, I’m sure all of my readers join me and Pattie in wishing you a complication-free transplant!  Or should I say, “transplants,” since you will be following-up the first auto (using your own cells) stem cell transplant with an allo (donor cells) transplant later on.  All the best, good friend!

Feel good and keep smiling!  Pat

 

 

Thoughtful discussion among experts about myeloma therapy options

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One of Andrew Schorr’s better clips featuring Dr. Craig Hofmeister, Ohio State University Comprehensive Cancer Center, and Dr. Sagar Lonial, Winship Cancer Institute of Emory University, discussing different myeloma therapies including stem cell transplants, non-transplants, targeted and combination therapies:

Transplant or Targeted Therapy: What’s the Mainstay for Treatment in Multiple Myeloma?

 

 

 

 

 

Definitely worth a look!

Feel good and keep smiling!  Pat

Brock's Ice Cream Parlor-Blast From My Past

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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.

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

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

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

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