THE WRITE PLACE…

to find Patti Singleton these days.

Tag Archives: caregiver


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Souvenirs from My Heart; Postcards-Six

 

Hummer & Fireweed PHALL PHOTO 2013

Hummer & Fireweed, From front porch of former home, snapped 2 days ago. Rochester, WA
PHALL PHOTO 2013

Great Blue Heron, Rochester, WA PHALL PHOTO 2013

Great Blue Heron, From back porch of my former home. Taken 2 days ago. Rochester, WA
PHALL PHOTO 2013

 

Here is the 5th installment of the serialized version of a section of the memoir, Souvenirs from My heart; The Patient Patient Advocate. Paul’s disconnected and as yet to be diagnosed medical symptoms take a bizarre turn for the worse and he ends up in the emergency room. This is not sci-fi…

cont. medical history document…

In March 2007 Paul was hit hard again with the nighttime fevers and chills, and daytime fatigue. He eventually took time off work and stayed home to try and get better.

Paul was so hot and chilled for several nights in a row that we went to the after hours clinic where his PCP was on duty. As we sat in the waiting room, Paul quietly mentioned that he was feeling dizzy; I turned to him, touched his hand and asked if he was okay.

He was sitting up in a chair, but did not respond to my voice or touch and his hand that was under mine started to “float” up, even as I tried to hold it on his leg. When I let go of it, the hand and arm continued to float in the air. Then both arms were floating; his eyes were open, but looked foggy and vacant. He was completely unresponsive to my pleas for him to answer me. He was still loosely sitting up in the chair. I ran across the room to the receptionist and tried to get help.

Paul broke out in a body-soaking sweat. The staff, including his PCP, told me to get him to the ER (emergency room). A man we did not even know, a patient at the clinic, helped me get Paul into our vehicle and I drove him to the local ER. Although he was now responsive, but still very pale, the ER staff took him immediately to Triage and began asking questions and drawing blood.

Then Paul had another “episode” like the one at the clinic, less than 20 minutes before. He was bleeding from an attempt to draw his blood, and was again unresponsive…covered in sweat, then seemed to pass out completely…other staff rushed in to help and they got him on a gurney and into a treatment room and began treating him for possible heart attack.

Postcard 6:

I had been trying to get Paul to change doctors, as his was an older man (very) and was soon going to retire. He was far too casual about the issues Paul was having, especially since Paul had such a clean health history. So, please take time and consider whether or not your doctor is the best fit for you if you begin to have unusual symptoms and do not feel they are being addressed properly.  Another big point: call 911 if you have a medical emergency anywhere except a hospital. I did address this with Paul’s doctor and got a sincere apology. The doctor or his staff should have called 911. As it was, a complete stranger helped me get Paul into my truck, rather than the clinic staff. I was not in any condition to drive; this was the most bizarre and frightening medical emergency I had ever witnessed and I was so afraid for Paul.

Postcard 1 here.

Postcard 2 here.

Postcards 3 & 4 here.

Postcard 5 here.

Other notes:

Still not caught up on social aspect of my writing. Have not written or edited a thing:>( Bad writer!  Have worked outside on garden projects, which are nearing the length of my list of writing projects. Got new garden soil added to my friend’s back garden and added some of my extra irises and mystery bulbs. I’m helping him design a lower maintenance garden. Later, we took on the huge task of clearing the back area near Maggie (my home), where my pond and shade garden will go.  I feel much older and out of shape than I did a just a few days ago! The shiny side is that I am outside more and making something with lasting beauty. Oh, and I sleep a bit more.

Thanks for hanging in there, and your comments are especially appreciated.

Patti


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Souvenirs from My Heart; Postcards-5

Look at all these beauties! I think we saw a total of 5 bulls and one doe. Phall Photos 2013

Look at all these beauties! I think we saw a total of 5 bulls and one doe.
Phall Photos 2013

Did I really take another day off? No, but me and my friend drove the country back roads, the loooonnnnggg way to my destination, and I got some great shots in. Fantastic Elk pics and more.

Other notes:

Please see the Book Review on this main page (it’s in the right hand column on my screen–who knows where the hell it is on yours?).  I can’t recommend it enough.  You can buy it at Amazon.

I’ve dedicated my new photo site to my sister who died in 2012. I’ve added a page for my mother’s garden photos. She’s very good and grows an awesome garden every year in Eagle River, Alaska. Go on over and meet my mom, Rae Hall; you’ll like her! Phall Photo site here.

My son is sore but okay. Thanks for all of your well wishes to him.

Here is the 4th installment of the serialized version of a section of the memoir, Souvenirs from My heart; The Patient Patient Advocate.

cont. medical history document…

March 2006 Paul had a routine colonoscopy. The doctor that performed it said that Paul had 1 benign polyp that was removed, and suggested a follow up in 5 years. Paul’s PCP (his doctor) sent a letter saying that the “tubular adenoma” polyp was “pre-cancerous” and he wanted him re-checked in 18 months. Paul recovered quickly from the procedure, but was psychologically bruised :>) by the preparation for the procedure the night before. Being a former Marine, he had a few choice words to growl during that memorable evening. I still got him to laugh with my gross jokes about his “situation.” We were frustrated to get 2 different results and recommendations; one was a relief, while the other made us concerned.

Meanwhile, Paul was having issues with extremely sore hands and cramping–especially at night–in his upper arms. He never had aches and pains before, and we wondered if somehow the surgeries had something to do with it. Paul saw his PCP, who sent him to the surgeon that repaired his rotator cuffs …the surgeon had never heard of these kinds of side effects, and sent Paul for an arthritis test.

June 2006 Three months later, a diagnosis; arthritis in both hands, severe in thumb, but why the sudden onset? And this diagnosis still doesn’t address the soreness in his upper arms. Paul has always been very active and healthy, yet since around the time of his shoulder surgeries, he had been plagued with cramping arms, aching hands, night fevers & chills, fatigue, dental issues, and heartburn…he ate a lot of Tums.  Paul saw his PCP regularly (the months of 4, 6, 7, 8, 9, 12 in 2006), but no diagnosis was made. His shoulders gave him no problems at all.

For the next 8 months, Paul had the same issues, but the crystal form of  MSM that I filled capsules with seemed to help the aches and pains.

Postcard 5:

Paul and I both had gut feelings about all these strange medical happenings. Follow your gut feelings. We did do the normal things that you do with medical concerns, but we didn’t go any further. Push harder; get a second opinion if you don’t get satisfactory answers. It is your health and life on the line, so don’t worry about hurting your doctor’s feelings.

Postcard 1 here.

Postcard 2 here.

Postcards 3 & 4 here.

Thanks you wonderful people!

Patti


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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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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