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







15 comments:

  1. Thank you for sharing, I am in your shoes and I understand how you are feeling and you understand what I am feeling. But you, can put it into words for others to understand. I wish I could give you a hug! Carey

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    1. Hi Jean,

      I just want you to know that I love you and that we send our love. Aunt Sue xoxox

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    2. Thank you for sharing your story. I walk the same path as you do and I understand how you feel. Reading your story has inspired me as I go through dealing with a transplanted liver and Multiple Mylenoma. I am in remission as well and I do all that I can do to focus on the positive not the negative. I have my down days as well as my up days mentally. Thank you for your inspiring story.

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  2. Thank you Jeanie for putting into words what so many others with myeloma feel. It is a state of "limbo" that you simply can't get away from, even when in remission. I am thankful you were able to sit and share your thoughts and feelings, being brutally honest. You painted a very realistic picture of life with myeloma. It's hard. It hurts. It's scary. It's not how anyone wanted it to be. You will always be an inspiration to us, for all you have overcome and managed to do since your diagnosis, and that includes not only the Boston Marathon, but taking care of a busy family! In the highest of highs and the lowest of lows, we do the best we can, whether patient or caregiver, and it's okay to be vulnerable. We are on this journey with you friend...{{hugs}}!!!

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  3. I am convinced that there are forms of maintenance emphasizing diet, supplements, nutraceuticals, and other modalities that not only exclude long-term use of steroids and revlimid but also offer a real shot at preventing relapse. The Block Center for Integrative Cancer Treatment may be such a choice.

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  4. Hi, Jeanie, your beautifully written thoughts should be required reading. I am three years post SCT and am well into your wonderfully coined phrase "inbetween time." It's so difficult. That gray cloud of worry is always overhead. I certainly don't look like "cancer lady," and when friends inquire about how I'm doing I always reply "fine." I take the Revlimid and Dex at night (sleep fairly well in increments of 4 hours), take the antidepressant Lexapro (would not consider quitting it), and see my therapist in Psyciatric Oncology every five or six weeks (invaluable.) I suggest that you give therapy another chance. Best wishes.

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  5. Thank you so much for sharing your emotions -- it gives all of us who don't have to deal with MM an insight as to what is going on inside of you. I'm a morning person and love seeing the different reds and oranges shine through the clouds as the sun comes on the horizon -- I guess that is something which drives me to get out of bed each day, even on days I'd rather be sleeping in. Bobbie and I have two grown daughters and when I wasn't totally spent from work when they were growing up, I loved going in to watch them sleep -- so cute, so innocent, so loveable (then they turned into teenagers, but that's another story). That got me to enjoy life, to watch them grow right in front of my eyes. We had opportunities to travel and seeing their expressions when they saw the Eiffel Tower for the first time -- is that part of life and living? Like I kept writing to my friend Roy and kept telling him on the phone, I have no clue what is happening inside but completely understand why you feel like you do. I told him often make it a goal to do something for himself every day, to enjoy doing something for himself every day, to laugh and to have some fun. Even the littlest thing can ruin your day when emotions are exposed. But even the littlest thing can also make your day, to get you to put a smile on your face. It's easy for me to say because I don't have two sets of twins to care for and all I have to do is type away on this computer and offer tidbits of hope. But make it a goal each day to have Jeanie time, even if it is to play cards with Mike or sit on the patio and watch the clouds or spend 20 minutes with a Sudoku puzzle. I've found that as long as I have something on my schedule to do, the day is shorter and I look forward to getting going. One example of that is the tremendous letdown I am experiencing now with cycling. What now? I don't jump out of bed at 5 a.m. to get on my bike at 6. What for? Pushing myself with my friends climbing the one hill we have here doesn't happen anymore. What for? The ride to Maine is behind me -- did that, got the t-shirt as they say. But in reality, I force myself to get up on Saturday and Sunday mornings, to get on the bike and do my 47 miles because it is important for my health; it is my regular exercise and it is something I am doing for me. It is part of my weekly routine and I look forward to it. It's something for me -- Marty time. Betsy sent me your blog (didn't know you had one) and after I read this latest addition, I cried again. It is because of you and some of the other people I met on the ride that I have become a different person. You are my inspiration like I told you at the finish line -- not the other way around. Now get away from the computer, start planning something for yourself and have a great day today, tomorrow and everyday from now on. And there will be many, many more everydays from now on. Marty Perlmutter

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  6. Thank you for sharing this Jean. How I wish I could reach out to you and somehow make everything better, but the truth is, your life is never going to be the same. There is no way to make all of this right, but somehow you will get through it. I have had to accept that reality in my own life, pick up the pieces and try somehow to make sense of everything when there is no sense to be made. I want to know that you have been an inspiration to me. As I watched you overcome so many obstacles in running your marathons, I have set my own goals and pushed myself far harder than I ever dreamed possible. Sometimes we need to remember that it is ok to take a break and try again tomorrow. A great friend told me that, and I try to remember it always. I try to take time to fill my cup, take care of myself, make sure I am have enough inner reserves to help others. I know that if I am too tired, too used up, I am no good to anyone. I hope you are able to find your perfect balance and that you feel better about everything soon.

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  7. My relative is in that difficult maintenance phase with Rev as well... and they just welcomed twins (boy and girl) into the family, so it's hard to know for sure how much energy is being sapped from just being parents of newborns again, but your posting is a clear picture of the challenges of being in maintenance. Intending that your medical team can help you find some combinations that are aiding you to find a new balance of being aware of the world without being overwhelmed by it... and that you are continuing in maintenance for a long time!

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  8. Hi
    I came on to this blog as im feeling lost ,my husband who is 47, has just been diagnosed with MM,he is in a bad way, he cant speak about it and we both feal so sad, I love him so much but just dont know what we can do, he is trying to get on with life, and is trying to work, but even to walk he is so breathless, the hospital thinks that he has had this disease for a long time, I want to cheer him up, after listening to you i understand a little of his frustration, thank you for sharing, he has only been diagnosed within the last 5 weeks, is there anything you can suggest I do for him? He is so angry sad and confussed, he was so full of life before being diagnosedand now he is so scared..how can i help him to feal better?

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    1. I am almost two years remission. This is so hard on the family, after seeing what my family went through with me I will never prolong it again. Just keep loving him and listening to him. Take care of yourself so you will have energy to help him. I use to go to the clinics and look around at all of us sitting there with our blue colorless faces and tears would just roll down my face. You learn to take it day by day and remember (the perfect present) meaning now this minute is the only time that is important not yesterday or tomorrow but now. We have to keep encouraging each other to kick cancer in the BUTT DAILY!!!

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  9. There is a FB page for MM caregivers, patients and others... https://www.facebook.com/groups/108654495840465/ which I hope will help those who are looking for answers.

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  10. Hi Jean. First, I want to thank you for your blog, which I stumbled upon last June or so when I googled "mother myeloma" hoping to find someone in my situation who might be able to offer some insight into caring for young children (mine are 2 and 5) while also undergoing treatments for myeloma. I was diagnosed in March (after a plasmacytoma was found in February). I underwent an auto SCT at the same place you did back in August, right around the time you wrote this last entry on your blog. In the months leading up to my SCT, I was trying to understand how I might feel and what I might be able to do and not be able to do in terms of caring for my children once I got out of the hospital. What a help to come across your blog - most of what turned up in my search were comments on various websites written by the children of (mostly) elderly mothers who had myeloma.

    This is a long preamble to what I really want to say to you - besides thank you! - but I wanted you to know that you and I are in a similar spot and I share your feelings of anxiety and sadness about being a mother with cancer. It is so painful to face the possibility that I may not be raise my children to adulthood. I try to focus on what the doctors tell me though and what I've read - that although MM is not curable, it is manageable, and with new drugs coming down the pipe, we stand a good chance of living with this disease for a long time, perhaps even twenty years or more. I focus on those, like Kathy Giusti, who have lived many, many years with MM, and she was diagnosed at a time when the prognosis for newly diagnosed patients was not nearly as good as it is today. I also remind myself that I could die in a car accident any day. I don't mean to minimize the experience of having a potentially life-threatening disease, but I find it helps me keep things in perspective to remind myself that nobody knows when their time will come and that each day is a gift. For all of us.

    One thing my husband and I did, in addition to seeking individual and couples counseling, that has been *extremely* helpful to both of us in coping with my diagnosis and that you, too, might find helpful was to take a mindfulness meditation class. (Ours was actually called "stress management," but mindfulness meditation was at the heart of it.) If I understand correctly, you live near Boston, so you have access to the "guru" of mindfulness, Jon Kabat-Zinn, whose book Full Catastrophe Living and whose courses formed the basis of the class my husband and I took. Kabat-Zinn founded a program at Mass General back in the 80s (maybe even the 70s) and he may still work there. In any case, courses based on his design are still taught there, and maybe elsewhere in the Boston area. I highly recommend mindfulness as a way of addressing the anxiety and feelings of sadness and anger (and whatever other feelings come up) generated by a cancer diagnosis.

    I hope this comment doesn't seem meddlesome. I just wanted to share what has helped me deal with some of these same things you're feeling. I wish you and your family all the best. Thank you again for keeping this blog.

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  11. My mother just lost her battle with this disease.

    YouTube Tribute: http://youtu.be/zhTswTygMfw

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  12. Hi Jeanie,
    I'm a lurker on your blog. I've been thinking about you and hope that things are going well for you now. I hope you had a wonderful Christmas with your beautiful family.
    Anne

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