Sunday, September 28, 2014

14 Hours Saturday


 Slept OK Friday night, but achey at times, painful enough to wake me up. 

Spiked what is called a ‘neutropenic fever’ early Saturday and all energy drained from my body. Any idea of hitting the pharmacy for the scripts was blown away.  Every joint in my body ached with any movement. 

Took my temperature - it was 101.6 and way beyond the acceptable limit, especially after being so recently transfused. Friend Linda took me to the ER where I told the story of the disease, the fall, and events of the past week - three. more. times.  Tiring, that. Finally taken to an exam room and put on a gurney. Fever now 102.

Heart monitor attached, oxygen administered. Blood cultures were taken again as well an effort to reduce the fever.  No transfusion until the fever was down.
Taken by nurse Michael.
I struggled to will my body to respond to the big dose of tylenol to bring that temperature down. Fever finally abated to 99.2 when the blood was ordered. If the fever hadn’t broken, I was to be admitted to the hospital until it did.  

Blood had to be ‘imported’ from Wilmington because of the newly discovered antibodies involved due to the constant infusions. That took 5 hours. They got me rehydrated and left me alone to read or rest.  Sleep, of course, would not come. 

The suggestion was made to introduce more platelets, but I received them only last Monday, so the doctor rejected that idea. 

At this point it would appear that unless some miracle takes place in my body, I am living on borrowed time on the blood donations of others. Things will only get more complicated as my body begins to reject and finally refuse to be cooperative in keeping me alive. Borrowed time, as it were. Didn’t get in until 11 last night. Fourteen hours later.

I’ve had little to eat since Friday, but I’m not hungry. Only thirsty. Pumping my body full of fluids all day yesterday slaked my thirst temporarily. It’s back now.

Feeling slightly better this morning, though still weak and a bit achey. Temperature a bit elevated, but no headaches - yet. If I spike another high fever today, I will need to be admitted to the hospital.

Who knows, for how long. 

I hate writing about this, but it’s the only way I can express myself and explain what is happening in the most sane way possible.  I am not a medical professional; so much of the jargon is way over my head, but I get most of it in the abstract. The prognosis isn’t good.

I guess I ought to be concerned about the apartment, my things, and the car.  I am not. They’re only things, tools and the like. They don’t mean anything to me, really. They are nice to have, but that’s that. 

For the first time in my life I am not worried about paying bills, either. Anyone who knows me knows what a stickler I am about paying bills and my credit score.  Always have been.  Not anymore.

The universe has me in its embrace and I can do nothing but my best to try to heal and hope the body will respond.  If it’s too late and the old body can’t take any more, then so be it.

I will have to be in great pain, or discomfort before I submit my self to hospital care. If I go into the hospital the laptop will go with me. I fear I will be there for a few days, at least, maybe longer. If I fall that low - physically - I will likely give in to their demands. 

At present, I am not living life as meant to be. I live as a caged animal with little contact with the world; isolated from everything I love and need to remain sane and human. Just between you and me (promise you won’t breathe a word to anyone else) I just want this long nightmare to be over. However it may turn out.

Like that old saying: Pain is inevitable. Suffering is optional.


And so it goes.

24 comments:

  1. :(

    love you, cajun! I won't breathe a word. I am proud to know you.

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  2. Pain is inevitable, suffering is optional...
    Peace to you.

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  3. and always positive thoughts and prayers.....

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  4. I echo Anne Marie's sentiments. I just returned from a walk on the board on this early autumn Sunday evening. Rehoboth was still bustling with tourists. I was tempted to stop by Dos Locos and say "Hi!" to my friend the host, you. But of course I know you're not there now and all has changed. So quickly time goes by and lives change. After the loss of Big Bob this week, I don't want to even think about enduring another loss of a good friend like you. There, I said it. I know you don't want sympathy but I have to say the bravery you're exhibiting during your ordeal has given me new insight to dealing with a life threatening illness. As I was walking the boardwalk this early evening, walking through crowds of people of all ages, sizes, shapes and ethnicities and sexual orientation I thought of you and that you weren't there. At another time I would have called you and asked you if you wanted to meet at the Purple Parrot like we used to years ago. Was it really that long ago? Yes, it was. Times change, people come and go but one thing will always remain and that is you Wayne and the impact you have left on so many people's lives. Big Bob was one of those special people that everyone felt an immediate connection. You are also one of those unique individuals. Whatever differences we have fall by the wayside because the simple fact is, you are a class act. I am so glad I urged you to blog after your breakup. I would hate to think that you're going through this alone. You're not alone. Maybe we're not with you in person but we read your blog postings and are so appreciative that you have included us on your journey. We never know until it is too late the last time we see someone or communicate with them. So not taking any chances I want you to know that your friendship was one of the few in my lifetime that I put on that special plateau. While not of a romantic nature, it was just as special if not more so. You brought laughter and joy into my life and never once, NEVER were you boring. Maybe, sometime someplace we'll all meet in a better place. At times like this I always think of the that final beach scene in "Longtime Companion" when all the friends reunite for one massive party. Now wouldn't that be some party? My love to you.
    Ron

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    1. I may be a newcomer but have to agree with Ron, you are not alone. I think of you often and am with you in spirit. I have never met you in person but can tell by the smile in your photos that if I had, or if I ever do, the connection would be deep and good.

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  5. You stubborn old Cajun! And I feel allowed to call you that since I'm one too :-)
    Stay strong my friend. Good energy and prayers for you.

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    Replies
    1. hayward: it's nice to be recognized. ;-)

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  6. I have no words...only regret that I can't sit with you, hold your hand and watch over you while you rest.

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    Replies
    1. Thanks, Sassy. I'll be alright..it's a nice comforting thought.

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  7. My prayers are for your comfort and peace as much as healing.

    Larry

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    Replies
    1. Larry: Aren't you Ron's dear friend? I thinkwe met once a long time ago. How did you know about my situation? None the less, I appreciate your thoughts and prayers.

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  8. Oh what awful news; keep writing and keep us up to date. I how both get you well.

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    1. Spo: I'll do my best. Sometimes just walking the few feet around the bed to the desk is a challenge. I do it when I can. Many thanks.

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  9. Always positive thoughts and prayers, my friend. Always. And modern medicine is a wonderful thing.

    Peace <3
    Jay

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  10. I've turned over every rock and boulder searching for it, but for the life of me can't remember where I put it. I usually don't misplace things, everything has a place and everything is in its place, but not this time. I've looked high and low, but still no luck in finding it. I haven't used it in a long time. Heck, I haven't had the time to even look at it, but I thought it would always be there patiently waiting. After looking and searching I'm afraid I may have took it for granted one time too many. Is it too late? Please God, it can't be too late.---

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    Replies
    1. Roger: I've read this over and over and cannot figure out what it means. Sorry, maybe it's Chemo brain. But, thanks for the thoughts.

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  11. I am a newbie here, but I have been nothing but touched by your strength and sense of humor, and your frankness and willingness to share.

    Thinking ... just thinking.

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  12. Thinking deeply of you, my friend. Wishing you all the comfort you need, in the hope that you'll be 'up and running' again very soon. Healing hugs to you.

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  13. Thanks for your blog. Your honesty and humor have lifted my spirits many times since my diagnosis. I have little to laugh about, but your blog makes me do that. Visiting here has been a lifesaver for me. I have never left a comment on any blog before. I just wanted to tell you that you have kept me going when I felt like giving up. Thank You.

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    1. Anonymous: Thank you, whoever you are. You have lifted my spirits with your thoughtful comment. Maybe one day you can contact me privately and I can share more of the journey with you, some is just too much to share here.

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  14. Remission please for my blogger friend, Wayne da Cajun! Though I haven't been home in 4 months being in the hospital and/or rehab, I still have a good prognosis and will get home soon. I pray for you in my thoughts for I know your prognosis is not as good as mine. I have envied your freedom to drive around, find sweet corn, go to the beach, and cook some of your favorite foods, while I have felt like a prisoner in jail (rehab center). As our health declines, we realize just how important our health is. Everything else just becomes material "things" as you have said. At this point, about all we can do is express love for our friendships. Especially those we made at the first bloggerpalooza. So, Wayne, I love you and wish you to be pain-free wherever you are -- and for now, I hope that is in remission of the disease.

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    Replies
    1. David: I know....it's the sweet silver queen corn jealousy that got to you! ;-) Thank you my friend.

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  15. So sorry to hear about these recent developments. Thank you for keeping us updated, and please know that you are cared about and loved. Don't hesitate to call on me if I can help at all.

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