Oh how life changes us....
Riding in our local parade, 1983
Currently, as I sit down to write, Jim is struggling to balance and walk back into the house.. he is forgetting how to move, how to walk, how to move his feet... I can see his mind trying to analyse things still... over analyse in a detrimental way... Chris and Jim attempted to go for a little walk outside, but Jim has been very disoriented today, well, this week, well, since last week and the week beyond.... his situation deteriorates and accelerates downhill daily, with a few moments of clarity and orientation. Alzheimers is just so cruel and evil... I hate illness and body sabotage... so incredibly unfair on so many levels...
To Be Continued, as Jim (with Chris) is struggling stand up right now...
To Be Continued, as Jim (with Chris) is struggling stand up right now...
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Yes, I was planning to write about so many things. I always have so many topics I want to share with you. I begin several posts before I post, but I rarely post the posts I begin or write in my head....
Here's a part of what I was going to write:
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On my way to my weekly blood tests this past Sunday, I was feeling so "alone". NOT lonely, just so alone in all my challenges and battles. I was thinking about the difference between being Alone and Lonely. I am not at all lonely. I have so many wonderful people in my life. Family, Friends, Caregivers, Neighbors, Acquaintances, Medical staff, even Social Media "friends", etc, surrounding me all the time. I could pick up the phone, and be with anyone, or a number wonderful people in second. I could go places, do things, have all kinds of adventures in a second, (if I only felt well enough!). I am Not Lonely at all and never will be. But the feeling of "aloneness" really hit me the other night. The feeling of being so Alone in all that I am dealing with, confronted with, slammed me in the face as I was driving. I was almost in tears. Tears of recognition. Tears of defeat. Tears of immeasurable sadness about what has happened in my life in the last 10 years, and of recent with Jim.
I pulled into Kaiser for my labs and "pulled myself together" psychologically. I am a master of disguises, always "faking it til I make it". I don't want to be "weepy" wherever I go. I have been, but don't want to be. It's just not me. I am not afraid of my emotions. Not afraid of people knowing me and my feelings. I just don't want to be sad. It's so sweet how I am always greeted personally by the kind, caring check in staff. They know me. I am their "regular Sunday labs gal". Been doing WEEKLY blood tests since Kyprolis, Darzalex, now Velcade! Wow, since Fall 2015! Just something as "small" as this identity recognition warms my heart and boosts my spirits. See Julie, you really are not Alone in this crazy, continuing cancer battle.
I'm also greeted with recognition and smiles by the Phlebotomy team that knows me too well. We chat about our mutual lives. Sometimes there are others in the lab, thankfully often not, as I try to time it when Sunday night Urgent Care is not busy. Our conversation often includes amazement of my ongoing chemo, treatment, incurable cancer situation. Everyone is always incredulous I am as "ok" as I am, look as "good" as I do, and am as "positive" and "upbeat" as I am. That's just me. I don't want to be sad. I don't want to be weepy. I don't want to be dragged down by all this illness awfulness. It's not who I am. My spirits are renewed. Just simple acts of recognition, familiarity, kindness and understanding renew me, and remind me of who I used to be.
I leave the Lab for the Pharmacy just steps away to pick up my Rx for weekly Cytoxan. My phone rings. It's my son Scott and his fiance Ashley, on the way home from a trip. Crazy timing, as they are Right There, on the freeway, almost passing where I am. Unbelievable timing... or is it. They are right there. I let them know where I am. We're all shocked at the "coincidence"... at how location-close we all are. Right there, at the Same time! They were thinking about stopping at In n Out. I hadn't eaten much yet, and was planning to go home eat. They're Right There. I'm Right There. The timing is incredible... We decide to meet up at In n Out. They're amazed I'll go lol. I tell them how sad I had been. How "alone" I had been feeling. The timing was crazy. Meant to Be. How could I not meet up! They're sad I was so sad. I reassured them it had nothing to do with them being gone. It was all about me. All about the overwhelming sadness of the medical insanity in MY life. They still felt bad. My kids always feel so bad and sad for what we are going through. The timing of this was truly amazing. We met, we ate, we laughed, my spirits again were renewed. Timing... wow...
I am alone in MY journey. I am alone within Myself, about myself. Has nothing to do with others. My life is full of amazing, wonderful, loving, caring people. I have so many, so much in my life. I am so lucky on so many levels! Can you believe this timing?!
That was Sunday.
Monday is Dex Steroid day. My day of fake feeling good. Of not feeling sick or in bone pain. Of things sunshine and renewed spirits. I feel like me again...
The kids and I go out Monday night for my daughter's boyfriend's birthday. We laugh a lot. I'm their crazy, steroided, dexified, hilarious mom. We laugh! I'm feeling like me again. Free of pain. Not nauseated. Free of illness. Free of sadness. Free, for a day... Temporarily, this is me again.
The me before illness took over our lives.
I am not Alone. I am not Lonely. I am a Very Lucky Lady!
I pulled into Kaiser for my labs and "pulled myself together" psychologically. I am a master of disguises, always "faking it til I make it". I don't want to be "weepy" wherever I go. I have been, but don't want to be. It's just not me. I am not afraid of my emotions. Not afraid of people knowing me and my feelings. I just don't want to be sad. It's so sweet how I am always greeted personally by the kind, caring check in staff. They know me. I am their "regular Sunday labs gal". Been doing WEEKLY blood tests since Kyprolis, Darzalex, now Velcade! Wow, since Fall 2015! Just something as "small" as this identity recognition warms my heart and boosts my spirits. See Julie, you really are not Alone in this crazy, continuing cancer battle.
I'm also greeted with recognition and smiles by the Phlebotomy team that knows me too well. We chat about our mutual lives. Sometimes there are others in the lab, thankfully often not, as I try to time it when Sunday night Urgent Care is not busy. Our conversation often includes amazement of my ongoing chemo, treatment, incurable cancer situation. Everyone is always incredulous I am as "ok" as I am, look as "good" as I do, and am as "positive" and "upbeat" as I am. That's just me. I don't want to be sad. I don't want to be weepy. I don't want to be dragged down by all this illness awfulness. It's not who I am. My spirits are renewed. Just simple acts of recognition, familiarity, kindness and understanding renew me, and remind me of who I used to be.
I leave the Lab for the Pharmacy just steps away to pick up my Rx for weekly Cytoxan. My phone rings. It's my son Scott and his fiance Ashley, on the way home from a trip. Crazy timing, as they are Right There, on the freeway, almost passing where I am. Unbelievable timing... or is it. They are right there. I let them know where I am. We're all shocked at the "coincidence"... at how location-close we all are. Right there, at the Same time! They were thinking about stopping at In n Out. I hadn't eaten much yet, and was planning to go home eat. They're Right There. I'm Right There. The timing is incredible... We decide to meet up at In n Out. They're amazed I'll go lol. I tell them how sad I had been. How "alone" I had been feeling. The timing was crazy. Meant to Be. How could I not meet up! They're sad I was so sad. I reassured them it had nothing to do with them being gone. It was all about me. All about the overwhelming sadness of the medical insanity in MY life. They still felt bad. My kids always feel so bad and sad for what we are going through. The timing of this was truly amazing. We met, we ate, we laughed, my spirits again were renewed. Timing... wow...
I am alone in MY journey. I am alone within Myself, about myself. Has nothing to do with others. My life is full of amazing, wonderful, loving, caring people. I have so many, so much in my life. I am so lucky on so many levels! Can you believe this timing?!
That was Sunday.
Monday is Dex Steroid day. My day of fake feeling good. Of not feeling sick or in bone pain. Of things sunshine and renewed spirits. I feel like me again...
The kids and I go out Monday night for my daughter's boyfriend's birthday. We laugh a lot. I'm their crazy, steroided, dexified, hilarious mom. We laugh! I'm feeling like me again. Free of pain. Not nauseated. Free of illness. Free of sadness. Free, for a day... Temporarily, this is me again.
The me before illness took over our lives.
I am not Alone. I am not Lonely. I am a Very Lucky Lady!
hi Julie. Sorry about Jim. It is so unfair. Hugs coming your way. You and I are so aligned...I've been feeling very alone as well. As you say, not lonely. But alone. Chat soon. Matt
ReplyDeleteThank you Matt. Hoping you are doing ok, and your heart is healing from your loss. Yes, it's amazing how this MM ride affects us all so similarly. So glad we found each other's blogs! :))
DeleteDear Julie: I'm (almost) afraid to give you my thoughts on things, I'm not a family member, enduring friend, myeloma patient or physician. I'm just somebody who crossed your path once, many years ago, as a student and secret admirer.
ReplyDeleteYour family is such a beautiful bunch, and your life has been idyllic in some ways, deplorable in others. You have experienced the best and worst of what all humans go through. Your inner strength has been tested—Jim's too—and you and he have gained strength, compassion, wisdom and understanding beyond most others. Amazing folks, all of you.
In my own physical health struggles, and those of bi-polar/depression, I understand some of your "alone-ness", as I sometimes feel my soul has been stolen, and I will die completely alone, although surrounded by loved ones. In my case, the meds and hospital/clinic trips sometimes are overwhelming and I quit them, I just give up for months on end. Not a good choice, but I'd rather die than continue. However ... one thing keeps me going.
The one thing is the knowledge that we traverse this world, and others, many, many times, and have since the beginning of time. We're not physical beings having a human experience, we are spiritual, energetic beings having a Universal Experience. We just (possess) these animal bodies as a a means to interact with the energy all around us. Earth is just one of many stops along our paths. We are here to experience and grow in wisdom and love for all beings.
How is that supposed to make me feel any different, you might wonder? Chances are very good you knew Jim before this life, and he knew you. You've danced together throughout eternity, and will continue to do so, until we all, eventually, learn our way back to Source-the giver of life to all. The real US never dies or forgets, only in this plane of existence, and very briefly compared to where our souls have been and are going after this elementary school graduation. The SOUL, the sum total of our universal(ego filtered) experiences lives on.
If I am being pampas or insensitive in any way, I apologize as it is not my intention to be that, nor to sound preachy and definitely not religious. My own two spiritual awakenings years ago set me on a diverse and comprehensive search for our true purpose, and I find it now to be so simple. Love, experiences and growth. Anything that encourages those things is usable material, especially if we didn't choose it.
Simplistic as my words may sound, these thought have served me well over the decades, and millions around the world feel the same things. NOT a "New Age" con job or pie-in-the-sky fairy tales, but true philosophical and scientific data from eons of life on the late great planet Earth.
Jim, the obnoxious one...
Thank you Jim for sharing as you do, and letting me know more detail of who you are. I enjoy reading your ideas and thoughts on this journey called life. I'm glad to know we have actually crossed paths before, and glad our meeting was positive for you.
ReplyDeleteI'm sorry to read of your medical challenges, but it sounds like you are doing ok, and processing your situation deeply and thoughtfully.
I appreciate you sharing your views, as we grow from seeing life and the world from other's perspectives. This Universe is so vast, and our knowledge so small. One day, perhaps we will have "understanding" of what this "earthly" experience and challenges were and for. So much to process on the "how come" and "why" of things for me. But I think, think, think, process, process, process, then move forward. I just can't believe all the complications in life. Maybe it's just a factor of getting older ?? Thank you for taking the time to write as you do Jim. Take care, and feel well.