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
3 Ocak 2013 Perşembe
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 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
Inexplicable delays in understanding myeloma hurts research progress
To contact us Click HERE
While reviewing my ASH notes and related posts, I wanted to highlight this paragraph from one of my articles about vaccines and immunotherapies from two weeks ago:
A number of recent studies came to similar conclusions. Taken together, they reiterate what has long been known but not quite grasped in such detail: that even a single cancer patient carries a private ecosystem of pathology within her body, a tropical rain forest of disease. If the old chemotherapies and radioactive treatments worked like napalm to blast away the canopy, the new breed of personalized therapies target only specific plants. For some cancers, the more homogeneous ones, they do the job just fine. For others, though, the approach comes up against the relentless rules of Darwinian selection. Wipe out one subtype of a cancer — the clone that seems most aggressive, say, or the one that’s most prevalent in a biopsy — and you may have slowed the disease or thinned it out. But the cells left behind might represent a fitter strain and fill the niche.
Pay special attention to the part that I’ve highlighted in BOLD. This was the focal point at several large, important oral presentations at ASH; how current novel therapy agents only wipe-out a few types of myeloma cells, leaving clones behind that eventually emerge stronger and more aggressive.
These drug resistant clones are where researchers need to focus their attention. Some are, but as odd and discouraging as it sounds, they are just starting to understand the anatomy of our disease.
As a matter of fact, several seemed pleased with themselves that they are figuring this out. NEWS FLASH: It’s 2013, people! And you’re just learning how myeloma cells act and react now?
What can I say? Better late than never? ARGGGG!
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.
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Wednesday, June 25, 2008Today 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
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
2 Ocak 2013 Çarşamba
Idealized American image of Christmas leaves many outside looking in
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Yesterday I received a small package in the mail. It was from my new friends at Cure Talk. They’re the ones who produce our monthly Myeloma Cure Panel broadcasts. I wrote about that yesterday.
I have never asked, but based on their names, pictures and accents, I don’t think I’m going out on a limb to say the compay is run by people of Asian Indian decent.
Inside the package was something called Soan Papdi. Never heard of it, never tried it. Apparently these small, powdered sugar covered squares are a classic Indian treat. Very sweet yet peppery, with a texture I had never experienced before. I enjoyed sampling something new.
Of course, there are probably quite a few Jews living in my Gulf Coast of Florida neighborhood. Jewish families that have probably adjusted to being left on the outside looking in. It all makes me painfully aware of how insensitive many Christian Americans can be.
I’m not going to get off-track and try and define “Christian.” Lets accept it in it’s broadest form: Anyone who believes that believes Jesus Christ was the son of God, including Mormons and a number of grey area sects.
Man, this can get complicated. And that’s my point. In an effort to make things simple and comfortable for the majority of us, we have excluded more of our American brothers and sisters than we can count.
But it all goes far deeper than that.
What about those of us that are emotionally conflicted–or even depressed by this holiday? Those who have recently lost loved-ones. Our new, dear friends who lost someone they knew or loved in Connecticut recently are perfect examples.
Or what about those of us living with multiple myeloma?
I’m not sure if my contact at Cure Talk, Pryia, is Christian or not. But I applaud her and others there for assimilating our customs and holiday, while going out of their way to share a bit of their own.
My mother adored Christmas. And it was a magical time for me. As strange as it sounds, she didn’t drink as much over the holidays. My father (a hard working, young attorney) took a few extra days off then, too. So when I see the idealized, happy-ever-after story lines that dominate these made-for-TV films, I reflect fondly back to my childhood; conveniently forgetting that my mother was a mean drunk and died when she was my age of lung cancer.
HO HO HO!
I may be have become oblivious to all of that. But I’m painfully aware of the alienation and confusion that must be felt by children–heck, adults, too–that don’t fit into a cookie-cutter shaped Christian and Santa Clause dominated hole.
One of my all-time favorite Saturday Night Live animated shorts features Darlene Love singing “Christmas time for the Jews.” Love it! The part about a Rabi circumcising squirrels in Central Park is amazing! If you look closely, you can see the little crossed bandages placed carefully over their little squirrel nuts. HA!
I’m biased, but while we’re at it, let’s include the emotionally and mentally troubled. I think that cancer and Christmas aren’t mutually exclusive. I recently cried my way through a well made Hallmark film about a teenage boy who needs a heart transplant. Close enough.
I’ll try and tie all of this together in a bright red Christmas bow tomorrow. I’ll be positive and hopeful. Promise!
Want a raw, cutting edge view from a breast cancer survivor that steadfastly argues that “cancer is not a gift,” before switching over to a more traditional, jolly seasonal mode? CLICK HERE.
Feel good and keep smiling! Pat
Enjoy your holiday!
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Sorry today’s post is so late. Cleaning the house, pool and cooking for ten. Good to see everyone, but I’m exhausted! Young nieces and hard partying relatives will do that to you!
From what I understand, it didn’t do well when it was first released. That’s hard to believe. Its the perfect combination of a parable, love story and unashamed sentimentality. I love it! It isn’t hard to imagine a burgundy tinted version, featuring most any multiple myeloma patient and his or her family.
If only we could go back to before we were diagnosed–before our kidneys failed, or our bones were left full of holes. And I wouldn’t just want to go back. I would want to retain all that I’ve learned while struggling through my myeloma journey. How I’m a lot tougher than I ever thought I could be. And how important it is to live each day as if it were my last, but more importantly, to remember how to do it.
No one is immune to pain and heartbreak. All we can ask is to live long enough to apply the difficult lessons we learn from it.
I’m going to stop here. Pattie’s sister and her family are asking, “Where are the dessert plates and forks?”
Merry Christmas!
Feel good and keep smiling! Pat
Don’t give up on anti-cancer vaccines just yet…
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A number of prominent members of the multiple myeloma patient community have been emailing the link to this December 21st article from the NY Times Magazine:
Is the Cure for Cancer Inside You?
I like the NY Times’ approach to journalism–in-depth, lengthy articles that don’t skimp on detail and nuance. But I think these two short excerpts capture the essence of Daniel Engber’s expose’:
Faced with this troubling complexity, doctors have fallen back on treating cancer like a game of Whac-A-Mole: find the harshest clone and knock it down, then repeat the process when the tumor reappears. Or else doctors will attack the tree right at its trunk, by finding those ancestral genes that every species in the body shares. But there’s another way to counter cancer’s biodiversity. Our bodies come equipped with a system custom-built to handle pathogens in all their many forms. If the immune organs could be activated against a cancer, we might find a pathway through the jungle and, maybe, to a cure…
More experiments are on the horizon. Jaffee is building on Steinman’s work by combining the latest round of immune boosters with a dendritic-cell vaccine. There is progress in immunotherapy for other cancers, too: ipilimumab is being used for treating melanoma, and related drugs are in the pipeline that make a tumor more vulnerable to attack. In 2011, The New England Journal of Medicine published the results of a method known as “adoptive T-cell transfer,” in which T-cells are extracted from the body and reprogrammed to go after cancer cells. This has proved a potent treatment for some patients with advanced leukemia, but it poses greater health risks than the vaccines that rely on dendritic cells. “We’re going to learn a lot over the next 10 years,” Jaffee said, as we walked through the lab. “We’re just at the beginning. This is going to be the start of a whole new field.”
It’s a must-read for anyone interested in how vaccines and other immunotherapeutic approaches are developed and applied in live patients.
As the article states, this approach is still in it’s infancy. But faster and more and more advanced computers–along with a willingness by researchers to share their findings with others–give hope that immunotherapy research may advance exponentially faster than in the past.
Myeloma patient activist, Jack Aiello, wrote about the subject in a recent email:
It’s interesting to see how studies with personal vaccines, even for myeloma, have been going on since I was diagnosed in 1995. I remember a 1995 article featuring Dr Larry Kwak (now at MD Anderson) who treated an MM patient with a vaccine made from her twin. In the mid-90’s I signed up for a dendritic vaccine trials at Little Rock. Most recently Dr Carl Jung at U of Penn has shown some success with vaccine development for 3 other blood cancer (I think) patients. Hope someday a technique is successfully developed…
Me too, Jack! Feel good and keep smiling! Pat
First post about our Rose Bowl experience
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OK. I was too exhausted to post about our Rose Bowl experience last night. It was an amazing day!
Yes, I’m disappointed Stanford won a very close game–the third consecutive close game Wisconsin has lost at the Rose Bowl. And yes, I can’t remember the last time I walked this much! Many, many, many miles; between getting to and from the parade, making the almost Mecca-like walk down into the valley bowl where the Rose Bowl venue sits–then all around the stadium, inside and out. Then back up the hill to our friends car.
But it was an amazing experience, one I need to share with you over time. I have a myeloma meeting this morning. Then Pattie and I are playing tourist and meeting an old friend this afternoon before we head home tomorrow.
Today we are visiting Santa Monica pier, Venus Beach and Hollywood. Pattie has never been to California so why not? I’m feeling fine and she is too. Should be a fun day.
More myeloma related content tomorrow. Feel good and keep smiling! Pat
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
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
1 Ocak 2013 Salı
FINANCIAL AID ALERT!
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I need to delay my previously scheduled post so I can reach those of you that may be interested in applying for myeloma related financial assistance in 2013. Make this common mistake in January and it could cost you a thousand dollars or more!
I had hoped my fourth book, Financial Aid for Myeloma Patients and Caregivers, would have been published by now. But there have been formatting and production delays. My publisher, Mira Publishing in St. Louis, promises me I will have a hundred or so promo copies available by January 10th. But that could be too late for those of you that are going to apply for co-pay relief from the LLS or a half dozen similar funding sources.
So consider this a “freebie” or sneak preview of how my book can help most of you save a lot of money!
I just returned from a meeting with my financial contact at Florida Cancer Specialists in Brooksville, Florida. The company is a fast growing group of small, local oncology offices. Instead of waiting for them to call me in after the first of the year, I figured I would be proactive and get-in before things got too busy.
My cantact, Shawna, was pleasantly surprised I would do this. In the past, I would be rushed-in and asked for my credit card number to cover co-pays. I would them submit those charges to the Leukemia & Lymphoma Society (LLS) Co-Pay Assistance Program for reimbursement.
This time, Shawna helped me by setting the program up in the system as secondary insurance. That way I will only be billed for any diagnostics not covered by the LLS until I reach my out-of-pocket max of $1,500.
Note the “diagnostics not covered by the LLS” part. For those of you with co-pays, keep in mind that none of the myeloma aid foundations I researched reimburse us for diagnostics co-pays. This applies to those of you on Medicare, too.
So whatever you do, put-off as many diagnostic procedures (X-ray bone surveys, MRIs, PET scans, even SPEP tests if possible) until after you reach your out-of-pocket max. For most of us on Velcade, Revlimid or other expensive novel therapy agents, this should only result in a delay of a month or two. For me, the process should take less than a month!
Shawna broke things down for me. As hard as it is to comprehend, one Velcade infusion, along with supportive testing and care, is billed at $3,800. That’s a week! $3,800 X 20% (my co-pay until I reach $1,500) is $760. I will have reached my max in two weeks!
But not understanding this, two years ago I learned an expensive lesson. I headed-off to Moffitt Cancer Center for a battery of diagnostic tests in January–tests that the LLS wouldn’t reimburse.
Keeping a close eye on scheduling since then, I was able to “save”–by being reimbursed more for treatment first–a not inconsequential $910, simply by delaying some of those tests until February. Happy New Year!
This example may not specifically apply in your case. But thanks to my helpful contributor, fellow myeloma patient Richard Blustein, I include dozens more specific examples like this one in my book. A list of contacts (last count I believe I was up to 46) that all discount services or give away free stuff is one thing. But a road map that specifically helps you use them best if what my new book is all about.
So please, please be careful around the start of the new year! And for you Medicare patients, next year I include tips on how to identify supplemental policies that are myeloma friendly.
As promised, tomorrow I will try to quantify how long adding new, experimental myeloma drugs into our long term therapy plans might help keep us breathing. The numbers may surprise you!
Feel good and keep smiling! Pat
70 Marathons, 50 States
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Thursday, December 13, 2012:
We did it! Last Sunday we three all ran the Honolulu Marathon. For me, this completed the full circuit - a marathon in each state. The nations's 50th state was also my 50th. More about the marathon. We don't yet know what 2013 will bring, but we'll be running.
Pomalidomide Trial:
Thursday Dec. 13 marked the end of my 62nd cycle of the study of pomalidomide, the drug that has kept my myeloma stable for four years and nine months. Result: Again, no change. I love that stuff. IgG dropped an insignificant amount, from 1270 to 1250 mg/dL, while M-Spike dropped a bit more, from 1.2 to 1.1 g/dL, though that drop is also probably not significant. Light chains are up a bit but the ratio is unchanged.
Other Blood Results:
Two liver markers, AST and ALT, were well above the top of their reference ranges. This has happened before, and this time my old body had seen a lot of physical stress in the preceding four days including a hot marathon and an eight-hour overnight flight, so I expect those markers will return to normal. LDH was also slightly high, probably due to the same stress. The white count was slightly off the bottom edge, but that's sort of normal for me, as is a red count hovering at the bottom edge. Lots of other important markers are just fine, though, including hemoglobin, platelets, calcium, and more.
Metformin:
People on one of the email lists have recently discussed metformin, a prescription drug used to treat diabetes. Some have reported that their myeloma stabilized after starting metformin, and some early laboratory studies have suggested that metformin isn't at all nice to myeloma cells. Even Dr. Durie has mentioned it. Metformin affects blood sugar in a rather specific way, and myeloma cells gobble up blood sugar like drunken sailors, so there is some possibility of an actual mechanism here. I discussed this a little with doctor LH, and we didn't get far with it, but you might try googling "myeloma metformin" and see what pops up. It's WAY too early to use metformin for myeloma, but stay tuned, who knows. It could end up as the kind of drug that's used in combination to enhance the effect of the big hitters.
ASH:
My sweeties and I did get to the ASH Conference in Atlanta for a day and a half, but I didn't get a chance to attend any of the talks or even review any of the abstracts. I did, however, get to look at all of the "poster talks," each of which describes an advancement in some aspect of hematology. Some of those have large implications, some small. Some are very preliminary, and others are in actual trials on actual human beings (as opposed to mice or whatnot). Somewhere near 200 of those posters were specifically about myeloma, and I think at least a dozen, maybe more, were about real human trials with new, interesting-sounding drugs. Furthermore, the very best papers on the most promising human trials were given as oral presentations and were not even shown as posters.
The point is: There's a lot of research going on in myeloma, and some of it isn't ten years away, some of it is right on the horizon. There is hope. Enjoy your exercise, eat excellent food, sleep right, and stick around for what's to come.
I hope to get a chance to read some abstracts and some papers, then blog about ASH a little. However, these are excellent sources of information about ASH:
Related Links:
We did it! Last Sunday we three all ran the Honolulu Marathon. For me, this completed the full circuit - a marathon in each state. The nations's 50th state was also my 50th. More about the marathon. We don't yet know what 2013 will bring, but we'll be running.
Pomalidomide Trial:
Thursday Dec. 13 marked the end of my 62nd cycle of the study of pomalidomide, the drug that has kept my myeloma stable for four years and nine months. Result: Again, no change. I love that stuff. IgG dropped an insignificant amount, from 1270 to 1250 mg/dL, while M-Spike dropped a bit more, from 1.2 to 1.1 g/dL, though that drop is also probably not significant. Light chains are up a bit but the ratio is unchanged.
Other Blood Results:
 |
| We enjoyed Hawaii |
Two liver markers, AST and ALT, were well above the top of their reference ranges. This has happened before, and this time my old body had seen a lot of physical stress in the preceding four days including a hot marathon and an eight-hour overnight flight, so I expect those markers will return to normal. LDH was also slightly high, probably due to the same stress. The white count was slightly off the bottom edge, but that's sort of normal for me, as is a red count hovering at the bottom edge. Lots of other important markers are just fine, though, including hemoglobin, platelets, calcium, and more.
Metformin:
People on one of the email lists have recently discussed metformin, a prescription drug used to treat diabetes. Some have reported that their myeloma stabilized after starting metformin, and some early laboratory studies have suggested that metformin isn't at all nice to myeloma cells. Even Dr. Durie has mentioned it. Metformin affects blood sugar in a rather specific way, and myeloma cells gobble up blood sugar like drunken sailors, so there is some possibility of an actual mechanism here. I discussed this a little with doctor LH, and we didn't get far with it, but you might try googling "myeloma metformin" and see what pops up. It's WAY too early to use metformin for myeloma, but stay tuned, who knows. It could end up as the kind of drug that's used in combination to enhance the effect of the big hitters.
ASH:
My sweeties and I did get to the ASH Conference in Atlanta for a day and a half, but I didn't get a chance to attend any of the talks or even review any of the abstracts. I did, however, get to look at all of the "poster talks," each of which describes an advancement in some aspect of hematology. Some of those have large implications, some small. Some are very preliminary, and others are in actual trials on actual human beings (as opposed to mice or whatnot). Somewhere near 200 of those posters were specifically about myeloma, and I think at least a dozen, maybe more, were about real human trials with new, interesting-sounding drugs. Furthermore, the very best papers on the most promising human trials were given as oral presentations and were not even shown as posters.
The point is: There's a lot of research going on in myeloma, and some of it isn't ten years away, some of it is right on the horizon. There is hope. Enjoy your exercise, eat excellent food, sleep right, and stick around for what's to come.
I hope to get a chance to read some abstracts and some papers, then blog about ASH a little. However, these are excellent sources of information about ASH:
- International Myeloma Foundation
- Myeloma Beacon
- Living With Multiple Myeloma
| Test | Sep 20 | Oct 17 | Nov 15 | Dec 13 | Remarks | |||||
| M-spike g/dL | 1.0 | 1.0 | 1.2 | 1.1 | \ Tumor marker down | |||||
| IgG mg/dL | 1210 | 1180 | 1270 | 1250 | / Tumor marker | |||||
| Lambda mg/dL | 2.61 | 2.38 | 2.92 | 3.25 | L free light chains | |||||
| Calcium mg/dL | 9.7 | 10.0 | 9.6 | 9.3 | OK | |||||
| Creatinine mg/dL | 1.1 | 1.3 | 1.2 | 1.3 | Kidney, barely OK | |||||
| HGB g/dL | 15.1 | 15.7 | 14.7 | 15.1 | Hemoglobin, fine | |||||
| RBC M/uL | 4.22 | 4.35 | 4.13 | 4.31 | Red cells bottom edge | |||||
| WBC K/uL | 3.7 | 4.4 | 5.5 | 4.4 | White cells, low | |||||
| ANC K/uL | 1.70 | 1.90 | 3.00 | 2.10 | Neutrophils, OK |
Related Links:
| My Myeloma | A discussion of my myeloma, not very technical. | |
| My Treatment History | Not technical. | |
| My Test Charts | Graphic displays of several key test results over time. | |
| My Test Result Table | Somewhat technical. Best with a wide browser window. | |
| My Supplement Regimen | With links to where I buy them. |
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
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
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 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
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