This week marks the 3 year anniversary of when I was first diagnosed with Multiple Myeloma.
It has been just about 10 months since I've written. For all of you who have wondered out there on cyberspace, no, I have not died. I am happy to say I am still here and still enjoying a "Complete Response" (ie: no Myeloma Detected!). So why have I been so quiet?
I guess there are a number reasons I have been silent for a while. The easy answer would be that life got so busy that I didn't have the time to write. Or perhaps I didn't have much to say? Or maybe for a while I just wanted to try to get some sense of normalcy and not think about my Myeloma? In a way, it is all those reasons. But if I look back at my last post in August of 2012, it is difficult for me to read it. I had opened up and shared that I was struggling with my "New Normal" . At the time, I didn't realize just how dark my world had gotten.
When the kids returned to school last fall, I made an appointment to see a therapist. I had struggled for so long. I remember how nervous I was waiting in the waiting room. Wasn't it easier to just carry on and block out all that bad stuff and stay busy? Did I really want to share all that happened? Did I really want to go back there? I wanted to just get up and run out that door. But before I could, a woman came out and called my name. Within moments I felt completely at ease with this person. I felt safe. And at the end of my first session, I learned that I was in very deep depression, and had been for quite some time.
I believe that people come into our lives not by chance. That if you are truly present you realize the gifts that are sometimes right in front of you. Well, I have had quite a few gifts lately. One in particular, is a beautiful woman named Robin. She is one of the most compassionate people I know. Robin owns an incredible antique, collectible and home decor store. It is like no other store I have ever seen. In fact, customers often say that going to Robin's Egg is their therapy. That it just feels so great to be there. I was one of those customers. For a long time, I would find myself coming to the store just to walk around and take in all of the beautiful things inside. Robin always had a warm smile on her face. I felt peaceful and happy there,
Week by week, I was making progress in my therapy sessions. I was also finding myself visiting Robin's Egg more and more. I started to experiment and play around with paint and began refinishing furniture. At the end of November, I asked Robin if I could help out at the store. I told her she didn't have to pay me. I would volunteer, I just wanted to be there. She took me up on the offer. My son Cam often told me that I was crazy to work for free. But I assured him that I was getting something much bigger than money in return. He of course could not comprehend this. Each day I spent there, I found myself feeling happier. I just loved meeting and speaking with all the customers coming in and I loved learning from Robin and all the talented people who worked there. In fact, I began to feel that passion, that spark that I had lost for quite some time.
Doors began to open. Opportunities came along. And things just started to feel right. I now not only work at the shop, but I am dealer there. In fact I have been pretty successful. I have a garage full of projects. I'm enjoying every moment of it. I love finding the treasures, bringing them to life, and sharing them. I love that people appreciate my work and actually purchase them! I love the women I work with and the friendships we have formed. But I am most appreciative for Robin, for coming into my life and helping me discover something totally new and finding that spark, that thing that makes me feel alive!
My kids just have about a week of school left. They have had a wonderful year of growth and achievements. They are really coming into their own. And although we need a chalkboard in the kitchen to keep track of where everyone needs to be and when, I just love how full of life they all are. My boys loved their first year of middle school. Cam loved being on the Cross Country Team, Wresting Team, Flag Football, Track and Student Council. He also has achieved his Brown Belt in Karate. Mitch had an incredible year discovering his love for piano, and enjoyed his first year on the Football Team. He played on Basketball Team, Flag Football, Track and of course Baseball. All Stars has just begun and we have our first of many baseball tournaments this weekend. Sarah and Emily are completely passionate about gymnastics and compete on Team. I am in complete awe as I watch how they can move their little bodies. Sarah has also become a beautiful pianist. I just love listening to her.
It has been at times painful, yet amazing to watch my kids live everyday knowing that I have this incurable cancer. We may not speak about it everyday, but it shows up in their poetry, their writing and sometimes their doodles I find at the bottom of their backpacks. The boys in particular, as they are older, try to make sense of it all. Sometimes the boys will tell me a fact they have read regarding the life expectancy of a person with this disease. And they tell me I guess we are one of the lucky ones. I can see them worrying about me relapsing. Sometimes I can see the worry and concern in their eyes. When I'm tired or if I am not feeling well, I can feel them worry. If they hear of someone dying of cancer, the worry returns. As a mom, it is so hard to watch them struggle. I never had to worry about having a sick parent as a kid. This makes me sad.
My husband Mike has also had a year full of discovery and new passions. In the fall he completed his first marathon. This is the same guy, that ran his very first 5k 3 years ago and always said that he could not understand why anyone would ever want to run 26.2 miles. Well he did it, and he rocked it! He didn't stop there. He has spent the past several months training to compete in his very first Half Ironman. Crazy!! I have never seen anyone so disciplined. Mind you, this is a guy who travels for work and is pretty much a workaholic. Now throw in the training that is required for this event. Well if anyone can do it, he can. And this Saturday, all that training will come together as he crosses the finish line. I am so proud of him. He is doing this not only as a personal goal, but also to raise money and awareness for Multiple Myeloma as a member of the Multiple Myeloma Research Foundation Power Team. Mike has kept his own blog on his training. http://www.70point3timeandacure.blogspot.com. Please click on the following link to support Mike
http://www.active.com/donations/fundraise_public.cfm?ckey=2013mmrfYOR&force_a2=y&key=YORMDreyer
Tomorrow I have my appointment with my Oncologist and I'll receive my Zometa Infusion. I actually missed my appointment on Monday. I couldn't believe it. My favorite nurse Leslie called to see where I was. She laughed and said that it is a good thing when life gets busy and a cancer patient forgets their appointment. It is nice to finally be at a place where the first thing I think about in the morning is not the Big "C".
Three long years. But here I am. Grateful, happy, healthy ,busy and filled with passion.
Tuesday, June 11, 2013
Wednesday, August 8, 2012
I'm In Remission, So What's Wrong?
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
Monday, July 2, 2012
Let's Hear It For Marty And His Cure For Cancer Tour!
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
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