I have tried to write a meaningful post nearly every day since getting home from radiation, and I still donāt quite know what to say. I donāt have the capacity, nor do I think it appropriate, to lie. However, telling the truth will likely result in people checking in with our family and friends to see if Iām ok, so please let me preface this by saying: I am doing my best. My providers are aware. I have probably tried or looked into the majority of suggestions people have. This is simply what my life is like right now. I am posting because I know people are concerned and/or wondering.
I feel unwell. Physically, emotionally, mentally, and spiritually. It is 2:24pm as I draft this post, and I have not been able to get dressed, do anything with my hair, brush my teeth, or do Anything other than wash my face, eat a few things that didnāt require prep work, and do a few stretches today. Every time I get up to, say, use the bathroom, I am met with this overwhelming feeling of exhaustion, discomfort, and an inexplicable feeling that I Need to sit back down. Iām lightheaded and nearly pass out with standing up, 10 hours in bed isnāt enough, I have horrific nausea and an inability to eat more than a few bites of food without my body rejecting it. Since getting home from radiation less than a month ago, I have unintentionally lost approximately 15 lbsā¦ thus far. I know most of this is muscle mass because I canāt consume enough protein to maintain it.
Every single day is a struggle. When I have appointments, I have to painfully force myself to do things in order to get out of the house, but typically feel worse because I have to keep ignoring my bodyās pleas to sit down and stop doing. Once home, I typically cannot get off the couch for usually about 2 hours. Some days I feel better in the afternoons and have maybe 2-3 hours where I can get a few things accomplished. This is usually the time of day when I either get dressed for a few hours, or change into a new pair of pajamas. Iām sure some of you are thinking: That sounds great! Sit around all day in your pjs?! Sure, there are certainly worse ways to spend your day. But this has become my Life as of late, not because I Want to, but because I have no choice, and I am very sad, scared, and depressed. I absolutely cannot tolerate any further aggressive treatments right now. I canāt even tolerate eating food to keep me going each day.
I had another echo and met with a new cardiologist a couple weeks ago. My heart function appears to have declined further since radiation, which is no surprise given what happened. However, before deciding how aggressive weāll be with treatment, I need a cardiac MRI to ensure we have the most accurate function of my heart. They only have 1 machine and are booked out, so I wonāt be getting that done until end of August.
I am in pain, short of breath, intolerant to exercise, lost in brain fog, struggling with horrendous exhaustion, unable to maintain a comfortable body temperature, and still dealing with all the limitations from spinal surgery and radiation. I donāt think itās necessary to detail it all out, as Iām sure you can begin to imagine how and why my mental, emotional, and spiritual health are all struggling as well.
My next scans and appointments with Mayo are stretched out over the course of a week, which is incredibly annoyingā¦ my appointments will be from June 28 through end of day July 3. Great way to head into the holiday weekend here in the U.S.šš¤š
I realize this post probably doesnāt sound a whole lot like meā¦ but I donāt feel much like myself anymore anyway. My poor husband and kids have had to watch me struggle to get through each day, to cry and cry because I canāt do the things I want, or even Need to do, and be ok with everything changing More because mom canāt tolerate much of anything. I absolutely Hate having to take life day by day. And after 4.5 years of being forced to do that against my will, now I have to take things hour by hour, sometimes minute by minute. I do not have the luxury of planning anything for the future. As human beings, we thrive on having things to which we can look forwardā¦ I have fear and terror of what could happen. With a teeny tiny sliver of hope that I am Really struggling to maintain.
But every day, I get up with the commitment to TRY my best, despite. Hoping and praying that things will start to get better. That I will get better. That I will shock everyone and heal myself.
I donāt know what tomorrow will bring.. I donāt even know if Iāll manage to get dressed today. I am annoyed that itās taken me an hour to write this postā¦ I forget what Iām saying and doing while Iām in the process of saying/doing, so writing, reading, and talking are all more challenging now, too.
I want to post more, to be helpful to others, or perhaps even inspire.. but lately I can barely help myself, so I guess thatās where I need to continue to focus my energy and attention for now.
Maybe someday soon Iāll figure out how to manage this struggle better, but for now I need to preserve the little bit of energy I have.
Thank you for your prayers. I appreciate them and you. I will continue to pray for and affirm: Better days ahead! šš»
Lauren MG Doyle 