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When Nothing Seems to Make Sense with Myeloma
Posted: Oct 06, 2016
When Nothing Seems to Make Sense with Myeloma image
In honor and memory of Lizette Smith Conley

Today, like most every morning for the past 3 years, I woke up with a happy and grateful heart. I am alive and I am feeling okay, despite the holes in my bones, neuropathy in my feet and unrelenting back pain. I wake my beautiful daughter with a kiss and her breakfast. Never, in her almost eleven years, has she given me anything but a sweet, “Morning Mommy”. Yes, I know, I am very blessed indeed. We pick up her friend and drive to school, telling jokes along the way and punching each other when we see a yellow car. Oh how I treasure our mornings. Afterwards I go for a nice walk behind her school and am welcomed by the smell of fresh morning air, the birds singing, squirrels squirreling about, and the sunlight shining through the trees, making it look like the door to heaven is open just a little bit sharing a glimpse of its beauty. All of a sudden, I stand face to face with a beautiful deer as she crosses my path. I take out my camera but I am too late, she has already gone back into the woods. I talk to her quietly and ask if I can please take her picture. She turns her head toward me as if she understands my requests, and gives me just enough time to take the picture, looking right at me. I feel lucky indeed. Life is good! Next is my morning visit with my neighbor. At 81 years old her daughter decided it best she live in a home, very much against her will. Maybe her daughter knows best and it will do her good. I am not so sure. I am told she is quite the escape artist and every morning when she sees me, she tells me she is going home and asks me if I can take her. “No,” I say,” I will get in trouble if I take you, and then I won’t be able to visit you anymore. Let us go for a walk instead”. It breaks my heart, but I want to be there for her, as I wish others to be there for me. The Golden Rule is something I try to live be every day. As I walk past the open doors and see these old folks sitting in their rooms, I wonder if I will ever make it this far. With the way the cancer is behaving, I doubt it. After I leave her I have to pick up my medicine, one of many. I have had trouble sleeping ever since my diagnosis four years ago and 0.5 mg of Clonazepam has taken the edge off enough in the evening so that I can leave my troubles behind, and doze off to an often interrupted and restless night sleep. I get to the counter, first in line (that never happens) and give the young woman behind the counter my name. She goes looking and comes back with the order. I make sure it is the right medicine, very often it is not. This time is no different. Aspirin, 81 mg. When are they going to stop ordering that for me? I can get that over the counter just as easy, and cheaper at that. No, I need my Clonazepam, I used up the last one last night, and sleep won’t come without it. I start to panic. She directs me to a different counter and again I give my name and age. Sorry Ma'am, you are not due for a refill, you just ordered that a couple of weeks ago. At first I want to argue, then I remember, I have done this several times now. Chemo brain! Could it be that the bottle of Clonazepam is already in my overfilled medicine cabinet, hidden behind the gabapentin, Lexapro, Phenergan or hydrocodone, to name just a few? I apologize and put the blame on me.  Both women look at me with an expression resembling both pity and annoyance, and I am on my way. I have to bring lunch to my daughter because I did not have time to do so this morning. I need to go to MD Anderson this afternoon, and I already know my numbers. For the fourth month in a row the cancer has been climbing and I need to go on a different regiment. The pain has gotten worse and the PET scan confirmed what I already knew. There are new lesions forming on four different places, even a new spot on my lungs. I have nobody to go with me, but maybe that is better, who wants to see me like this today anyway? I am starting to realize that I am really not doing so well today after all. I get back in my car and sit in traffic behind a red car with a bumper sticker that has a picture of both Donald Trump and Hillary Clinton on it. Between their photos are profanity. Why are people so cruel? What is going on in the world, when did we become so rude, and proud of it!? I think about my friend and fellow MM warrior, Lizette Smith Conley, who just a couple of days ago passed away from pneumonia. No, she died from MM, because without this nasty disease, she would not have gotten pneumonia, and even if she did, at 48 she certainly would not have died from it. Just a couple of weeks ago we had texted back and forth, cheering each other on. I was concerned about the new pain in my chest and back, and she was telling me that it was likely nothing. She was reminding me of all the new treatments - all the trials, one of which would certainly put us in complete remission! Neither one of us wanted to do an allo stem cell transplant, but both of us said we would do anything to be there for our families. She was one of the strong ones, like me!!! She is the last one I had expected to lose this battle so soon, within the first five years, when 50 percent of Multiple Myeloma patients die. She was 44 when she was diagnosed, just like me. She was diagnosed in 2012, just like me. She was a fighter, just like me, and loved her children more than anything, just like me! I think about them. I think about her husband, and all of a sudden I lose it. I cry for them!! This must be so hard for them. This would be so hard for my husband and my daughter. It is the only fear I have left, the thought of how my daughter will handle it if I don’t make it. I don’t want to think about it, I try not to think about it, but the death of my friend Liz has brought everything just too close to home. I am bawling, and I can barely see the road through my tears. This journey is a tough one indeed. People can’t see it when they look at us. Yes, I am grateful to be here, yes, my life is good, but that is really not for anybody else to say, because having this disease sure as heck sucks as well, and that is something me and my fellow warriors have every right to say. Liz, I loved you for the short time you were in my life, and I know your struggles and pain are over now. I promise I will do all I can to bring awareness to this often unknown cancer, so that others may be better educated and seek help sooner than you and I did. You have made a big impression on me and many others, and I am okay with the tears today, because having had you in my life for just a short time was worth the pain I am feeling right now. Hope, Faith & LOVE Cherie Rineker

The author Jennifer Ahlstrom

about the author
Jennifer Ahlstrom

Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can contribute to cures by joining HealthTree Cure Hub and joining clinical research. Founder and CEO of HealthTree Foundation. 

Thanks to our HealthTree Community for Multiple Myeloma Sponsors:

Johnson and Johnson
Bristol Myers Squibb

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