THE WRITE PLACE…

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Souvenirs from My Heart; Postcards-Three and Four

Caspian Tern at Dinner Table.  John's River, WA PHALL PHOTO 2013

Caspian Tern at Dinner Table.
Johns River Dike Trail, outside of Aberdeen,WA
PHALL PHOTO 2013, click to enlarge

New Header photo. I love the sun rays that shoot down from the top. I took this through the Sweet Gum tree. Yes, that was a sweet gum seed pod/fruit in the post here. None of us ever figured out why it was so elongated. But after returning to investigate, I saw some were round, some were like the one in my photo.  Jon discovered that there are two completely different shaped leaves (pic below) on same tree?

Sweet Gum Tree leaves. The white feet of a cave dweller:>) PHALL PHOTO 2013

Sweet Gum Tree leaves. The white feet of a cave dweller. Painted nails & cool sandals courtesy of my daughter:>)
PHALL PHOTO 2013

This post  is part 3 of a serialized version from a portion of my memoir-in-progress. It varies slightly from the actual book, in that it is not a book, but a blog post! Smile. Below info is from the document I gave medical staff; theirs had a few more details (exact dates, etc), and no memoir narrative. The document also included Paul’s D.O.B. and his familial medical info, such as parent’s cause of death.

Abridged Medical History

August 2005 Surgery to repair left rotator cuff, non-hospital outpatient. (On the love story side of things, although I had met Paul 10+ years earlier, I became reacquainted with him a few weeks after this surgery. More of this in the first book in the memoir series)  

September 2005 Labs show low hemoglobin. Already, Paul has me tag along to all his appointments; an advocate is born (and no, I never got a cape or badge or anything).

October 2005 Paul went to the dentist for pain associated with impacted molar under a crown and gum problems. Molar removed, recovered quickly. Not to freak you out or anything, but leukemia patients often (Remember, I’m a stickler for no statistics) have dental issues months or even, as in Paul’s case, years before diagnosis.

Postcard 3:

Do you have a hard copy list of the current names and numbers of your friends and family? Why not just go ahead and start a file for your answers to these postcards? Then, if a crisis happens, you’ll be that much closer to being prepared. Add a star by those you want contacted first. Tell your closest family member where the file is kept.  

November 2005 Labs show iron/folates a little low.  

December 2005 Surgery to repair right rotator cuff, non-hospital outpatient. Paul recovered very quickly from both surgeries and followed through with several months of physical therapy. (Love story notes: I had just sold my house, so it seemed like a perfect time to move in with Paul and help with his recovery. Smile. His personal caregiver is born. Again, no cape, but I do get to be his chauffeur in a brand-spanking new Thunderbird!) Smile.

Late winter/early spring 2005/2006 Paul had periods of 1-2 weeks where he had a fever (no recorded temp, but skin was extremely hot to touch), and wracking chills at night. I would wrap my body around him trying to warm him up and calm the chills. He was fatigued and pale during the day, but continued to work, with more rests in between, and at a slower pace. We self-treated with aspirin and anti-inflammatory OTC drugs, rest, and cool rags for the fever. Something was going on, but his doctor had no idea what. These are more statistic-free indications of leukemia.

Postcard 4:

Have you followed through on Postcard 3 yet? Please add a page of basic family (parents, grandparents, and sibs) medical info. Big time-saver: your doctor’s office has this (part of your initial medical questionnaire)  on file. If stopping by doesn’t work, call and have them send you a medical release form. Fill it out, mail it back, and they will mail what you ask for. Some folks with huge files, can often request, and get a medical file summary.

Postcard 1 here.

Postcard 2 here.  

Hope you find something useful in these posts. Please let me know with a comment?

Thank you,

Patti


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Souvenirs from My Heart; Postcards-Two

Butterfly on Flower in my friend's garden. Phall Photo 2013

Butterfly on flower in my friend’s garden.
Phall Photo 2013

First, I want to thank those of you who read and commented on my essay, “Runaway Writer Found on Beach, Heart Broken, but Alive!” It will be up at http://www.gutsyliving.com for the rest of the month, then voted on August 1-14, and winner announced August 15th.

Souvenirs from My Heart; Postcards-Two

“Leukemia and other cancers do not seem to strike sick people.” This is a direct quote by me, with no qualifications whatsoever. Yes, this is only my personal conclusion from anecdotal evidence. (Remember, no statistics here.)

My conclusion comes from the hundreds of stories and memoirs I’ve read in the last five years. It comes from the many patients and caregivers that I met during our year in and out of hospitals and clinics. Instead of being unhealthy, most cancer victims were like my husband; healthy, non-smokers who got plenty of exercise. Many ate healthy diets and logged daily hours running, biking or working out at a gym.

Cancer can happen to anyone, at any time. Sure, there are high risk groups for some cancers, like those caused by smoking, and those passed down through genetic inheritance. Sadly, I’ve heard and read repeatedly, “But she/he was so healthy.”

Being prepared might speed up your treatment, it might help make an accurate diagnosis, it could even save your life. If you can’t do what it takes to be prepared for yourself, do it for the ones you love. The ones who will have to go through piles of paperwork, make a lot of phone calls, and piece together the vitally important information that medical staff will need to help you.

Postcard 2:  Please don’t live as if you were immune to bad things happening. I don’t believe that being prepared will bring the universe down against you. Being prepared is a loving thing we do for others, not especially for ourselves. Are all your current medications listed in one place, like your purse or wallet? Ask your doctor or pharmacist for a copy, then add vitamins and other over the counter medicines or supplements that you take to the list

///

To read SMH; Postcards-One go here. This is serialized version of a section of my memoir. It’s kind of serious huh? Hopefully readers will find enough value in the information I provide here, that they will hang in for the lighter sections.

Thank you for reading, please let me know what you think.

Patti


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Souvenirs from My Heart; Postcards-One

CASPIAN TERNS & A LOST SEAGULL Ready-Set-Take Off!!

CASPIAN TERNS & A LOST SEAGULL
Ready-Set-Take Off!!

First, please go see my “gutsy story” at http://www.gutsyliving.com  You can make a comment at the very bottom of the page.

The post title conveys that this is part 1 of a serialized version from a portion of my memoir-in-progress. It varies slightly from the actual book, in that it is not a book, but a blog post. Smile. My intention is to keep my writing focused on the memoir project, including blog posts here on The Write Place. If I bore the socks off you, then my new intention will be to move to a deserted island and never write again. Either that, or rewrite the damn thing, I mean, the host object of all my worldly dreams.  So, on with it!

This post could be about you or someone you love.

The contents of this post don’t come with citations, statistics, links, or expert opinions. You get souvenir postcards, instead.

The words within come from my heart; these are not happy souvenirs from my heart, but practical souvenirs, with bits of humor to buffer the fear, pain and sadness. (Plus Paul and I really loved to laugh)

These souvenirs were collected along our travels through many hospital stays. My late husband, Paul, and I gathered ways to help others who would be fighting for their lives, like we were fighting for his at the time.

We wiled away many hours in the hospital and temporary housing, talking about the physical clues we may have missed. I made a few notes about what we could put in a book for people in our situation. Paul’s first suggestion about our future book was to include his health information, from a few years before, right up to the day he was diagnosed with cancer.

That part was easy; I had already dug through doctor bills, lab reports and even our family wall calendar. My mission had been to make a document, specific to Paul’s health, for the millions of times doctors, nurses, administrators and others asked about Paul’s medical history.

I’m giving you the nitty-gritty truth here; even if you hand them a copy of the medical history, they will still want to hear it from the patient. In our case, Paul had made me his unofficial health advocate right after we became a couple, so he would defer their questions to me. I just read the answers from our copy of the document, or used it as a reminder of dates, lab values and other details. It did take months for me to think of making the document, but it sure saved our brain power once I had it completed.

Postcard 1: Make a written health history for yourself and family members, BEFORE it is needed, like now. Okay, maybe wait until you finish reading this post.

To be continued…

See, I told you it would be short, but that also means I had to cut it off sometime.

Watch for Souvenirs from My Heart; Postcards-Two with another beautiful picture that has nothing to do with the post.

As usual, I am happy to read your comments, questions, and critiques. However, mind reading isn’t my forte, so you’ll have to actually click on the button and write me a note. I’m so happy if you “like” this post, but why do you like it?

If you can’t “comment” or “like” because of technical difficulties, send me an email at 1writeplacewordpress at symbol gmail dot com. Weird, but that is so spammies can’t glom onto me. Please use the blog post title in the subject line.

Thanks ever so much,

Patti


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Memoir; Packing and Unpacking for Life in the Fast Lane

Many of my F/F may remember this post from that year in and out of hospitals. I caught it while working on the memoir and thought it was a good one to show what our lives were like.  I cleaned it up a bit and will find a spot for it in The Patient Patient Advocate.

Posted on Care Pages Dec 10, 2008 about our Thanksgiving scare.

Three hospitals, three temporary apartments, and numerous quick trips home in 5 months…

First, you pack to go to your “real” home to spend a cozy, quiet Thanksgiving. Finally allowed a few days away from the big city. Our own bed, woods, peace and quiet. You unpack and settle in. You delve into the secret gift room to see what goodies you can find among the gifts chosen over the year. The pool table becomes the gift table. So glad you bought for people when you saw good deals, or just the right thing for someone. Have to make this quick; don’t know how long you will have at home, or if you will get back before Christmas.

Fever takes hold.

You quickly re-pack to rush to the hospital; holiday traffic, 90 miles away. You forget all the things that you were going to bring back to the temporary home. You abandon the holiday meal, the fridge full of food.

First, you think, maybe a few days at the hospital. When you find out different, you make a run to the temporary apartment to do laundry, get some clothes, clean out the fridge there, and pack for an extended stay at the hospital. Bills to pay, notes and Christmas cards, appointments to cancel, appointments to make. Who can you call to clean out the fridge at home and take all the food?

At the same time, every minute, you worry about sepsis, this infection of unknown origin. He goes through 3 different antibiotics before they can get it under control. Make more notes in the medical journal.

You read, you knit, unravel mistakes, knit and repeat. It would be nice to unravel this cancer, to unravel a lifetime of regrets and mistakes. To knit over and around the anger, fear and deep sadness.

You have lugged enough stuff from the apartment, to the 7th floor, to try and make his stay here as good and comfortable as possible. Never enough.

Then, you re-pack; his body has performed more miracles, gave the doctors the numbers they needed in order to release him back to the temporary home. You lug it all back down to the hospital garage, load it up—barely room for him.

You stop at the store to pick over the shelves, the deli, to find tantalizing bits of food to entice him to eat. There are the 20 pounds he left behind, after 11 days at the hospital–about as much he has lost in the last 5 months! Time to pack on the pounds; fatten him up for transplant in 29 days. Stay away from people, cringe at the  stray cough or sneeze from workers and other shoppers. You want a force field so you don’t carry these germs back to him.

You shove the grocery bags in between the hospital luggage. Have to get  him “home” and tucked in as soon as possible. Haul groceries and hospital luggage  up the long sagging set of stairs, through the gate, then 5 sturdy steps to the porch, which damn key is it and  back to the temporary home! Safe, at last.

He feels guilty and says he thinks he can make another trip to the truck. You tell him to sit. You can do it. He sits. In his mind, you are sitting; he is hauling up the groceries and luggage, then parking the truck on the street and walking up the alley to the sagging stairs and the last five to the porch.

Unpacking is on a sporadic, as needed basis, for maybe a day or two. Where are those slippers? those pills? the phone number for the social worker? the addresses for the thank-you notes? the paper with our clinic appointment on it?—you know it’s in here somewhere??? He has his heated blanket, his favorite pillows, his snacks, thermometer, his water and his TV remote—ahhhh, he’s settled for the evening.

As you put it all away, you are reminded of your first pregnancy…always ready to go to the hospital at a moment’s notice. You don’t want to think about another emergency trip to the hospital, but, just in case, you start packing again…

Thank you for stopping by–I’m heading for the beach,

Patti


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Memoir Excerpt Draft; Living in Hospitals and Mr. I.V. Poley

Living in hospitals was a unique experience for my husband and, in a way, for me too. In 1969 I spent over two-and-a-half months in an Anchorage, Alaska hospital with a broken arm in traction. The family story is that one of my sisters walked into my hospital room and said something to me about my arm hanging from a screw through the elbow. She got the wrath of mom for it; apparently they were keeping that tidbit from me. I don’t have much memory of my stay—maybe she did traumatize me? :>)

I had health issues through most of my younger years, so I have been in and out of hospitals quite a bit. The last time was in 1983, in a Seattle area hospital with a high fever that wouldn’t lower for days. High fevers mess with your brain and I don’t have much recollection of that stay either. My parents were there from Oregon and I don’t even remember seeing them.

I also spent a good part of two weeks in another Seattle hospital when my first grandchild was born in 2006. I’ve hung out in hospitals for days with friends and family during labor and birth, and spent hours in the ER with my children, okay, mostly my son. None of that hospital experience prepared me for what my husband, Paul, and I went through during our year-long fight for his life.

Paul had never been a patient in a hospital; he had never had any serious injury or illness. He did have two shoulder surgeries in an outpatient clinic, that he bounced right back from. So, along with the shock of being diagnosed with a life-threatening cancer, the shock of living in the hospital environment shook him to his core.

During 2008 and 2009 we were in three hospitals, although the first one was only overnight. In June of 2009 we were residing at a Seattle hospital which, like me, was celebrating its 50th birthday. It was not a time of celebration for us, so it was almost irritating to see the birthday banners and bunting hanging everywhere. Celebrations were for the maternity section of the hospital; the rest of us were just not in the mood.

We were on the cancer floor, where we learned months before, that if you got transferred upstairs, it usually meant you weren’t going to make it. None of us actually knew that, but we never saw those patients and their caregivers again. We knew when other patients were getting worse, from our walking circuit. These were hard blows for us. It would have been relatively easy to find out where they went, but it was one of many times that we chose the fragment of hope, by not knowing the full story.

Walking the 7th floor circuit, as nurses and doctors encouraged patients to do; we met most of the other patients and caregivers on our floor. Some, we stopped and chatted with, others we just nodded our heads and smiled at. I became close to some of the other caregivers in the family room, where we made meals, took showers and did our laundry. The social aspects of the walking circuits and the family room were the highlights of many days and nights.

Meet Mr. I.V. Poley

Meet Mr. I.V. Poley

Paul had so many medications, fluids, pumps and other life-saving concoctions on his I.V. pole that it felt like three of us walking those halls together, not two. We eventually humanized him by naming him Mr. I. V. Poley and then we gave him a sign with his name on it (it is at top of pole and not in the photo). He was sometimes even more heavily laden with equipment than he is in the photo. I often introduced him to others, just to put a smile on their face. Even the doctors and nurses called him by name; most of them jumped on any levity they could find. Bringing Mr. I V. Poley to life was one of the ways we dealt with the upheaval of living in hospitals.

 

Thanks for stopping by,

Patti

 


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Writer’s Journal; Synopsis and Chapter Titles for Memoir

Here’s the short synopsis and chapter titles that I promised you. Whew! Just in time for tomorrow’s start of Camp NaNoWriMo.

My Virtual Camp NaNoWriMo

My Virtual Camp NaNoWriMo

Draft of short SYNOPSIS for The Patient Patient Advocate

Memoir series, Souvenirs from My Heart, centers on debut author, Patti Hall’s, year long battle for her husband’s life. She chronicles Paul’s brave and humble struggle through Acute Myeloid Leukemia, a bone marrow (stem cell) transplant, and Graft Vs Host Disease. The first book in the series, The Patient Patient Advocate, bridges the topics of love and loss, from the other two books in the memoir series. This book offers sage advice for those who find themselves in the role of caregiver/advocate for someone they love. It is the story that the author and her husband worked on while he was hospitalized; the story Paul wanted her to finish. From diagnoses to hope to hospice, Hall grabs the reader by the hand and heart. She takes them with her along the couple’s unforgettable journey through the often frustrating healthcare system, with humor and heart wrenching honesty.

Draft of CHAPTER TITLES for The Patient Patient Advocate

*Our Story: Pre-diagnosis to Hospice

*The Bad News First…Hey, Where’s the Good News?

*Hospital Staff; Nothing Uniform About Them

*Patient Care: Body, Mind and Heart

*Camping Out In Hospitals; No S’mores Allowed

*Tools of the Trade; When A Hammer’s Not Enough

*Paperwork Jungle; Before, During and After

*What We Did For Love; A Closet Full of Hats

Okay, everyone, there it is. This is my pet project for the next 30 days in the virtual writing Camp NaNoWriMo (National Novel Writing Month). One of my virtual buddies, Marie Bailey is a cabin mate, and our friend, Ellespeth (Liz) is signing up to be in our cabin too. Looks like the other roomies are four teen authors-to-be. Marie will have to be our leader, because she has done this before:>) Don’t tell her I said so. Wink Wink.

Notice that both items above are DRAFTS. That means I’m still open to community input, comments, questions and critiques. Jump in and tell me what you think.

Wish me luck,

Patti


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What Happens In A Bed

Eight days before her 50th birthday they were married in their cozy new pajamas, holding hands on his bed in the hospital. The pastor and witnesses wore protective hospital gowns and gloves; the patient was in isolation once again. A special dispensation from the head doctor allowed the bride to wed without protection. (Pun intended).

The bride’s aunt and the couple’s neighbor came the day before on a ring and pajama-driven mission. On the big day the pastor and his wife brought more pre-owned wedding rings to choose from. No flowers were allowed. No rice-tossing, no wedding music or little flower girl. No wedding dress or tux. No wedding cake either, although a nurse brought them cake on their 1-month anniversary. Frankly, they wouldn’t have chosen a big-event kind of wedding anyway. But a garden wedding might have been nice; by this time of year, their neglected back yard was surely exploding in blooms.

The pastor and his wife (a witness) were dear friends who had traveled 6 hours across the mountains with only 3 days notice. The other witness was from the bride’s new circle of caregivers who lived in the hospital with their stricken family members. This witness had a 20-year-old son who was having life-threatening challenges while waiting for a heart transplant. Later she would lead the pastor to her son’s room for a blessing.

The bride simply had to marry the guy after his sweet middle-of-the-night proposal, on knees that were so swollen that they could barely bend; they laughed and cried as he grabbed her waist and she helped him up off the floor, back onto his hospital bed.

This scene reminded both of them of a night in their own bed several years before, where they got to laughing so hard that they both ended up on the floor.  Humor was a big part of who they were as individuals and defined them as a couple.

wedding hands

After their friends left, after the certificate was signed, he was set up with the postponed blood transfusion, as the new wife slipped back into her protective garb. Later that night she unfolded her cot and moved it next to his bed; they slept in wedded bliss holding hands between the beds.

Her birthday began just past midnight 8 days after the storybook wedding. She woke to him singing “Happy Birthday” in his whispery-raspy voice, and ending in the words, “…and many more with ME!”

His optimistic song and the effort he made to sing it were her best gifts ever. Her birthday passed by at the bottom of a long list of medical priorities that day, but her thoughts kept drifting back to his gift. If she closes her eyes and allows herself, she can still hear it today.

Seven weeks later, 11 days before his birthday, the new bride became a widow. Preparing him for the next step on his journey, eyes filled with tears, she lovingly bathed and dressed his body on their own bed at home. He had been Captain of the volunteer fire department and 2 of his men helped her. Later, the new widow’s mother sat in a chair next to the bed, humming soothing words and watching her daughter frantically cover up his body as it cooled.

The pastor and his wife would be heading back across the mountains soon.