Progress Report

It’s 3:30 a.m. here in Chandler, Arizona where I am still at Chandler Regional hospital. I am laying awake contemplating life and getting myself ready for whatever lies ahead. I am being discharged to go home tomorrow, if all goes as planned. My husband was here today getting trained on how to do trach care and administer meds via my feeding tube, since I cannot swallow any food or liquid. Tomorrow he will be back to get more training and then we leave for the 2 hour drive home. It has been 18 days since this all began.

I was going to go home a week ago, but then I developed a blood clot in my right arm, it swelled to twice it’s normal size, and I had to have a stent placed in the vein. Fred, the tumor, was not content with just blocking my airway, it also decided to compress a major blood vessel. So I did another 3 days in ICU recovering from the stent procedure. Finally I have been deemed ready to go home, provided I have enough help and support to get the care I need. My husband and our circle of close friends have rallied to the occasion and are going to make it happen. I never imagined being so dependent on other people. But I am grateful for them all.

What we know so far about Fred is that it is cancer, but they still have not identified exactly what type or the status. We’re waiting for a full pathology report from Cleveland clinic. So we do not yet know the treatment plan or prognosis. For now my focus is on transition to living at home and adjusting to this new state of being where I cannot speak, eat or drink.

What does quality of life mean. It means being with the person who loves me with all his heart, being with my dogs, being with my loving friends and accepting their love and help. I can still read and write and listen to music and take a walk and see the sunset. I’m excited to be getting out of the hospital. I have reconnected with my sister who I have not seen in many years, and she has been amazing. She’s the one who named the tumor Fred. I still have my sense of humor. I’ve met some incredible nurses and others who go above and beyond taking care of people.

I have even taken an interest again in the outside world, and have been watching the new show with Krystal and Saagar, Breaking Points, which they started after leaving The Hill. I enjoyed Rising and I like the new show. But I do watch current events from a place of detached observation, not feeling invested in much beyond my personal journey and getting the most out of life as I can now.

I thank you for this space to write my thoughts out and share them. Onward to the next steps! I should try to sleep now.

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Comments

So sorry to learn about your ongoing difficulties and diagnosis, but very glad you have support and love around you. Wishing you some relief soonest, and the best possible outcome with your care and treatment.

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Lookout's picture

Great to hear of your loved ones support.

Sending healing thoughts your way.

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“Until justice rolls down like water and righteousness like a mighty stream.”

although I wish you had more information to help focus your energy and that of your support. All in its good time, it seems.

For me anyway, the only thing harder than accepting help is asking for it. I doubt I'm the least bit unique it that regard. Once we accept that we need help and accept that we can't do it ourselves, taking then asking for help becomes easier. As usual getting our egos and the lies we tell ourselves out of the way opens us to easily solving so many of life's problems, even big ones.

You'll be OK, CS. You have others to share whatever burdens or challenges you face. Gratefully accept it with a promise to yourself to later pass on what you receive. That's how we, together, is always superior to me or we separately.

Keep us in the loop when you get a chance.

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"Ah, but I was so much older then, I'm younger than that now..."

mimi's picture

still can write and share your thoughts and feelings with us. Loved ones are the best things to have, they are the ones who help you through all the challenges you have or had to face.

Best of luck for you and your family and friends. May the healing start and continue and may you be always surrounded by loved ones.

Give rose

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studentofearth's picture

and experience new adventures does not always require changing a physical location.

I am thankful you have a network of caring individuals around you in this journey with Fred. As with all journeys who knows where it leads. It will have all the joys, challenges and frustrations of any journey, plus those laugh or you are going to cry moments. Tears of joy and sadness are one of the methods our bodies use to remove toxins.

The idea our emotions and thoughts can effect health was introduced to me in 1984 reading Getting Well Again written by O. Carl Simonton, M.D., Stephanie Matthews-Simonton and James L Creighton. The book summarized their work and observations during their work at the Cancer Counseling and Research Center in Dallas, Texas. Your Sister's naming of Fred reminded me of the book and some of the stories of varying approaches individuals created during their journey.

Thank You for including us in your communications.

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Still yourself, deep water can absorb many disturbances with minimal reaction.
--When the opening appears release yourself.

earthling1's picture

That your humor is still fighting back is a great sign.
P.S. Keep Fred informed that the moritorium ends at the end of the month and he has to move OUT!
Best wishes.

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17 users have voted.

After six years, still getting robo-calls from Marriot Hotels.
They're like herpes.

snoopydawg's picture

to convey well wishes and a full recovery, but alas. I am glad that you are able to go home and that you have a wonderful support system in place. Hopefully hubby has some good ideas to take care of you and himself as well.

Thanks for letting us know how you are doing. Appreciate a follow-up if you are so inclined....

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19 users have voted.

The donor class doesn’t want it, and Americans elect the bribed. So suck it up.

The Ostrich should be the national bird not the Eagle

dystopian's picture

Wishing a fast full speedy recovery CS! Be well! We're all rootin' for you.

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We cannot solve our problems with the same thinking we used when we created them.
Look deep into nature, and then you will understand everything better.
both - Albert Einstein

enhydra lutris's picture

that you get to go home to an environment you know and like to be with friends and family. I hope that all the future news is good and that things go well.

Good luck

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15 users have voted.

That, in its essence, is fascism--ownership of government by an individual, by a group, or by any other controlling private power. -- Franklin D. Roosevelt --

thanatokephaloides's picture

"A hospital is like a war. You should try to stay out of it. And if you get in it you should take along as many allies as possible and get out as soon as you can."

-- Robert S. Mendelsohn M.D., Confessions of a Medical Heretic

Looks like you played it exactly right, CS! Wink

And I echo my fellow c99ers in my ardent desire to see you completely free of Fred and all his vile works!

Give rose

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"I say enough! If Israel wants to be the only superpower in the Middle East then they can put their own asses on the line and do it themselves. I want to continue to eat."
-- snoopydawg

CS in AZ's picture

@thanatokephaloides

Definitely a keeper.

Appreciate all the comments and good wishes everyone. I’m home now, trying to get settled in. Very tired from the big day.

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edg's picture

I hope the diagnosis is either treatable or benign and that you recover quickly.

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janis b's picture

Thank you for keeping in touch with us and inviting us to express our respect and appreciation for you. With all my heart I wish you well.

I’m glad that you have an abundance of personal strength and support from family and friends. I imagine that being in the comfort of home will contribute to your sense of well being.

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have essential family support.
Hang tough, chica.

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Pluto's Republic's picture

and imagining for you a great medical victory.

To have so many caring friends standing by to assist you in this battle is a tribute to what a fine friend you have been to others in your life. With your abundant curiosity and challenging intellect, you would be a great ally to your good friends. Sounds like you have a fine medical team behind you, too. All good signs for a remarkable bounce back.

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10 users have voted.
US capitalism has run into same problems that put Germany on the road to war in 1914. For Germany it was a question of ‘organizing’ Europe. For the United States it is a question of ‘organizing’ the world. — Leon Trotsky

I'm so sorry to hear that but it is good that you are home with family and friends.
Sending you best wishes and healing thoughts and some virtual flowers.

edited to let you know I sent you on a virtual trip to the arboretum in Bergen
https://commons.wikimedia.org/wiki/File:Rosariet_arboretet.jpg

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mhagle's picture

Sending you wishes for a gracious recovery. All the best to you!

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Marilyn

"Make dirt, not war." eyo

smiley7's picture

hugs, s/7

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