Lone Tree, Lake Oroville, 2007
“Frankly remission is an awkward place. In fact beyond the normal wear & tear of aging, I now look & feel as well as I did before I became ill. But I have not been able to go forward as though nothing had happened, & that is because something has happened & it happened to me.”
I have no idea where this quote came from. I’m sure I grabbed it from somewhere on the web, a friend or an article. I saved it months ago to write a post about it and failed to save the reference, for which I apologize.
But it illustrates so well an issue we don’t always talk about.
I have an online friend in England who wrote a beautiful and painful post about being in remission, being depressed and feeling guilty. She talked about how alone she felt and that her friends and family didn’t understand why she wasn’t “happy”. Why she wasn’t “moving on.” She had a young daughter and was a single mom, and quite frankly, she was trying to put some semblance of a life back together, but she didn’t know where to start. Everything but her daughter had been ripped away. It garnered a tremendous response of folks who totally understood where she was coming from and were relieved that someone had dared to articulate something they too were struggling with. She and I corresponded regularly for sometime and I’m happy to report that she found work helping others in an official capacity with cancer, and she is thriving. But it was after some really dark days.
It’s almost like a substance abuse situation where we have to hit emotional bottom and then pick ourselves up by the boot straps and say “ENOUGH!” That is, for those of us who survive the illness and the treatment. It comes on the heels of what I have talked about with regards to learning how to LIVE with cancer.
As a husband and wife, struggling to be on the same page on that trip to the bottom and hopefully back again, it should not to be dismissed lightly. I remember early on, and I have alluded to this before, that I was not kind to Dave in the very beginning. I had my lightbulb moment about it and things settled down after that. I realized that I was so afraid and I needed him – my man, by my side, holding MY HAND and telling me it was going to all be OK. I have learned over the years that when I have a very strong reaction like that, its best to look inward and try to find what is really going on. It’s generally not someone or something external that is causing me to feel a particular way. Oh it is contributing, or the impetus for what is happening, but it is generally not the culprit.
For many of us with Multiple Myeloma, we don’t feel as healthy as before. We have neuropathy, we are perhaps still taking some oral chemotherapy drugs, we’re tired, immunosuppressed, and then as with any cancer, there is the six month check up! A constant reminder that we have cancer! We’re damaged goods and we don’t like it. We may have restrictions. We might have had to retire early or go on disability. And it generally isn’t affecting just the patient. It’s affecting the marriage and/or the family unit in a big way.
One friend of mine whose husband got MM had to retire early and go on disability. Then she also had to retire early and suddenly, and begin the arduous task of taking care of him over the next 3 years. He recently passed away and so now she has to try and recreate a life after 3 years of myeloma without him, a widow. She was happy. She was working. She had friends. But talking with her recently she shared with me that the past 3 years with him were some of the happiest they ever had. Stuck in a little apartment far from home without all the trappings and stresses of their life, they were together, doing the simplest of things, they had everything they needed, and they were happy.
That launched us into that strange other worldly place that we both understood. I commented that Dave and I have never been happier as we are now after this experience. Oh we still quip at one another here and there and I can get annoyed, but it’s all so different. Our fuses are long and endless, and our blow ups are short and often end in laughter. We just don’t care so much about so many things that used to be the end all and be all all of our life. I share about in my talks, that Dave was telling folks he was “taking his life back!” And how I reminded him, “We don’t have to take it ALL back!”
Remission is indeed a strange little no man’s land. Some folks are saying Cancer Free now because of the historic connection of remission alluding to the fact that it could come back. Whatever gets you through it. Point is, if you are there and feeling strange, like you should be acting a particular way and you’re not… It’s OK. You’ll get there. Just keep moving forward, no matter how small.
Another friend of mine’s son recently wrecked his car. He was hit by another car and his cute little car was “totaled”. He was upset and angry. As you know, an old car that runs, is worth more than an old car that is “totaled” by the insurance company. Anyway, his mother said, “You can visit Pity Party, but you can’t live there!” Boy did that make me laugh out loud. It’s so true. We can visit, but really, we can’t stay. So pack up your bags friend, and get ready to bug out. 🙂 Create a new life, with new friends, maybe in a new place. Do what brings you pleasure.
“It is very important to generate a good attitude, a good heart, as much as possible. From this, happiness in both the short term and the long term for both yourself and others will come.” – Dalai Lama
Nicely said Danny and Stephen. It takes time to put it into a perspective that we can live with. And if we can do better than that, we are truly blessed. I firmly believe it is completely possible. I meet people often who have and it makes my heart swell and my eyes well up. It can take real effort for some early going, but it is effort that is worth every tear.
Stephen, I have often heard patients say they think it is harder for the caregiver than it is for them. It is hard for us to imagine that could be true when we see you suffering so. But I understand the sentiment, and as a caregiver I’m extremely appreciative to be so valued by those of you who are in there slogging away at the BEAST! Thank you – truly.
Lori,
A thoughtful, beautifully written piece…
The Dana Farber in Boston has talented and perceptive clinicians. My Nurse Practitioner was speaking of this topic recently and advised, ‘Those of you in remission, who seem to be waiting for the other shoe to drop, please breathe.’
I’m concerned for those who are or have been care givers in this regard. It has to be terrifying to be monitoring the status of one you love from outside, dependent on interpreting observable cues. The patient has the heat of battle, at least, as a distraction from these concerns.
Yes, remission is really awkward. I thought before I found that terrain, that I would be so happy to see its smooth slopes. Yet, I’ve found the surroundings to be much the same. Once you have this disease, you know there is no comfortable future– even if people speak of a cure.
On the other hand, there is a new freedom too. “I have met the enemy and they are mine.” You can own your fate and go about your life with all the vigor you may have held back. Why stop now?
Time to live a life worth living and do what it is you need to be doing. I am an old Zen student, and once another at a meditation intensive told Dainen Katagiri that he was done; he was cooked. He was too tired to go on. And Katagiri didn’t hesitate: “I can see your life force is blooming!” He stayed.
So, here we are in remission. Here we are with the chance to deeply grasp an ordinary life– sometimes marked by sorrow and pain– and make it bloom.
Of course, there is a secret here. Everyone is in remission, you know.
The time line is just shorter for some of us.
Lori I will tell you again that the last three years were the best. God blessed me with the honor of taking care of my husband. Would do it all over again in a heart beat.
As I wrote to my family earlier this week….when another negative thing hit our life….after cancer enters your world….there isn’t much worse that can happen. 🙂
Ironic that we’re all heading toward the same topic…..remission, response, whatever. I’ve been working on the same subject, for my cyberspace piece.
It would just be wonderful if we all knew how we/they are supposed to feel “during remission”. It still hasn’t meant that Bob can do the things that he once did.
And, the part about all of this that I love…that you mentioned…is the closeness the MM brings. Makes one appreciate the little things, in life. (That includes not being able to shovel, or vaccuum!)
Uh oh! Well, some men would love a doctor’s note on shoveling! 🙂 Do take care. Dave no longer has any restrictions and it’s a nice feeling. Even if he doesn’t feel like doing the things he used to do.
About that shoveling: my doctor sternly reprimanded me for that yesterday, so that is off the table once again. Apparently my back is not stable enough for that kind of exertion.
Hi John! Had a chance to go out and read yours on this topic! (http://www.snippe.ca/2012/01/remission-i-have-to-adjust/) Pretty awesome that you put it out there so early on in your journey as an honest and true phenomenon! I’m duly impressed and glad that you are feeling well enough to shovel snow!
I’m so sorry to hear about Sean. I only sporadically have checked in on him over the years. He will be in my prayers.
Well, what do you know… it’s not such a strange thing after all! I posted on this very topic just a few days ago: ()
It really is a somewhat difficult transition, even for those of us with Myeloma, which is not (yet) curable. For us, remission is a longer or shorter period between cancer-treatment episodes, so ‘remission’ really doesn’t at all mean ‘get back to your former normal life’ at all, does it… it’s almost more of an ‘on hold’ thing, in a way. At least that is how it is starting to settle in for me, tho I admit these are still early days.
Thanks for so eloquently describing this phenomenon!