By Jennifer Ahlstrom | Posted - Jul 25th, 2017

 

 

 

 

Talking About Death

BY CHERIE RINEKER Yesterday I saw my oncologist. As many of you know, I have been dealing with a lot of new bone issues, resulting in a lot of pain. It seems that I crack ribs just by bending slightly, turning wrong, or stepping off the sidewalk (all three happened in the past two months). Obviously that has made me more on edge and feeling a bit discouraged as the bag of tricks is all but empty. It seems my only hope is a trial that is not taking place at MD Anderson, and would require me to travel out of state. This is a very hopeful trial with a long waiting list, and I have no guarantee of being accepted. It depends on my health status and immune numbers, which have been very low for a long time. Needlessly to say, there were some tears. I have fought the good fight for going on five years now. I have so much to fight for, but, after seeing many of my fellow myeloma warriors succumb to this fight, I also know I do not want to fight needlessly, when all that can be done is throw more and more chemo at me which will ultimately kill me just as the cancer would. Chemo sucks! Cancer sucks! If nothing can be done, I don’t want to do both. Death is not something I fear. I have two fears: The fear of my daughter watching me suffer needlessly, slowly withering away a painful death and pain, a bone pain so severe that even the strongest opioids can’t make me comfortable. This already happened to me at the start of my journey, where the slightest movement had me wincing at a ten. I fear being comatose, incapable of showing those around me that I am suffering. This happened to me when I was on a fentanyl patch that made me incredibly sick, with blinding pain behind my eyes. The pain forced me to lay quietly, unable to show my husband how much I hurt. I don’t want those to be my last days here on earth. I told Dr. O that I will do everything to get into the trial, and I hope that this will be the one that will finally get and keep me in remission. At the same time, I am a realist and I know that this does not happen to all who have gone through this. Complications can arise that have killed some patients. Some don’t see remission; others have already come out of it. I started my second book, “A Pilgrimage toward Health” a while back. I have not been inspired to write in these past couple of months, but I have every intention on finishing the book if, and hopefully when, the trial is successful. I am an optimist, but I am also a realist. Cancer has taught me so many things, many of them very good. It has allowed me to take on Love and Life like never before. It has also shown me that no matter how hard I prayed, no matter how healthy I ate, no matter how positive I thought and believed, no matter how many prayed for me, sometimes it just isn’t enough. This has nothing to do with a lack of Faith, as some have suggested. It has nothing to do with not thinking positive enough, like some have told me, and it has nothing to do with not eating clean enough, or taking the “right” supplements, or drinking a cabbage concoction, like some insist. It just is. Some of us win this battle, some of us don’t. Period. To suggest to me that God has a hand in this, that He can perform miracles and cure me, but chooses not to, no matter how well the intend, feels like a slap in the face. Please, I know you mean well, and if it is all you know to say, don’t say anything. It simply does not make sense to me and my daughter. We believe that I am needed here, now, healthy, whole, taking care of our home, of her, of my husband. We do not believe that there could be a better higher purpose for me. We believe that me being her Mom, helping her through her awkward teenage years, guiding her in her young adult life, being there for that first heart break, IS my higher calling. Please don’t convince a terminal cancer patient that God sees a bigger plan. It does not help some of us during this time of realization that we may not be here for our children, who think they know everything, yet still need us so much. I know I have been an inspiration to many in the way I have fought this. This is the other side of it. This is understanding the reality of the fact that I may not survive this. It is okay to acknowledge this. I don’t feel the need to live in an” optimist bubble” denying this possibility. I need to be able to say this without people telling me it is not going to happen. Saying it won’t change the outcome one way or the other. I know that now! It actually allows me to be present even more fully. To love even more deeply. Death happens to all of us. It binds us in a way nothing else does. We do not need to feel alone in that. We can help each other by simply loving one another through it.

 
Jennifer Ahlstrom
About the Author

Jennifer Ahlstrom - Jenny A - Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical trials. Founder of Myeloma Crowd, Myeloma Crowd Radio and the CrowdCare Foundation.

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