THE WRITE PLACE…

to find Patti Singleton these days.

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Memoir Monday 1

The Memoir Monday feature will be posted every other Monday.

This memoir writing is tough stuff. Many of my online friends are from a circle of published or soon-to-publish memoir writers. Most are based on hard subjects; illness and injury, death by disease or suicide, and abuse or neglect. You have to wonder why these memoirs are so widely read. At first glance those subjects are sad or depressing.

Why do we read them? I have always read memoirs and biographies. Sometimes I’m drawn in by pure curiosity, other times the author is covering an experience that I have had, or someone close has had. I want to know how they got through it. I want a blatant or even a subtle message of hope. Yes, hope.

The author lived to write about it, so maybe they have a secret of survival to share with me. Maybe they write so well, with that just-right stroke of humor, that I will be whisked away on their magic carpet for a few hours. I hold onto the hope that the author not only survives, but thrives after their crisis. Hope. I read memoirs for hope.

Hope may also be the reason that I keep hitting delays in my own memoir. August will be five years since Paul’s death. The memoir keeps pulling me back to the hard memories, when I am beginning to see the light of happy memories of Paul, in my everyday life. Yet…we both truly wanted to share our journey with others. We wanted to offer help along the way, for others in a health crisis, and we wanted to offer hope.

That is why I took on Memoir Mondays. I need to get this show on the road! I want to share this part of the journey with my community. I would love some feedback. I plan on exploring the topic of memoir, as well as some resource links for others who are writing memoirs. I’ll review some memoirs and announce it when my friends publish their memoirs. There is a large community of memoir writers online, so this won’t all be new information, but it will be what I think is interesting, and what I think you might enjoy.

In the mean time, here is some of the writing from within my own thick “Memoir” file.

 

A little background: My husband, Paul, spent a year in and out of hospitals, and in short-term housing near the main hospital, while fighting Acute Myeloid Leukemia and the Graft Versus Host Disease (GVHD) that he got as a result of a bone marrow transplant. During that year, I kept family and friends updated by way of an online patient journal on Care Pages. The following excerpts are from the memoir I’m writing, and were written during a few days of the last hospital stay:

June 13, 2009 Last night we had our best sleep in a long time. That’s good, but really, we’re funnier when we go sleepless in Seattle. Since yesterday, Paul has a bit of medication-caused edema in his belly and arms. He is still taking walks around the hallway loop, 10-40 minutes a day. He’s trying to do his exercises, but his belly argues with too much movement.

The biopsies from Tuesday’s procedure showed that Paul has adeno virus in his stomach now. They have added two more drugs to fight it, and more fluids before and after the new antiviral. It’s a toss up which is worse, the virus or the treatment. The other drug protects him from the damage the antiviral causes. What a viscous circle. They continue to try and balance his glucose, but it keeps dropping low , then spiking high. They began a new plan today and it has stayed pretty even so far. Through it all, Paul pushes on to do everything he can to get better.

Wishing we were there,

Patti & Paul

June 14, 2009 (warning–talk of needles) Paul is doing better today. His cramping belly has let up a lot. This was ATG day, when they pre-medicate him, which sends him off to a pretty deep sleep. This eve he had his weekly x-ray. We walked earlier, and will walk again later.
Tomorrow is ECP day, when he is hooked up to a machine in his room for 3 1/2 hrs. I can’t remember if I told you all about it or not, but they put a large needle in a vein, then strap his arm to a small board to keep it immobile and straight. They take blood out, separate it, take one layer and treat it with a photosensitive drug, then pass the treated portion under UV lights, then the machine puts it all back inside Paul’s vein. I have read some encouraging studies about this therapy, and we are hopeful that it can help clear out the GVHD.
Everything they are doing will take time, so we are settled in for the long haul. We’re up for it, though. Whatever it takes to get us back home and Paul healed.
Husky stadium is outside our window, so we have been watching the flurry of graduation taking place this weekend. It is surreal to watch all these young people celebrating starting out their lives full of hope, from a hospital room window, where we fight for Paul’s life.
Paul says to tell you all, “Hi!” and thanks for all the support.
Paul & Patti

More background. Paul passed away in our bed at home on August 9, 2009. Less than a month later, I started back with my emails to friends and family, while I tunneled through grief and estate issues.

Sept 2, 2009 BLOG BLOG BLOG BLOG—It’s all about me! (I really know it isn’t)

Just tonight, I realized that I miss doing the updates about Paul’s health and our daily lives as fighters-for-his-life in a foreign land (hospital in Seattle). I thought that I could continue in a private journal, although the feedback is disappointing :>) So now I will write about me fighting for my mental life in this foreign land of Paul Is Gone. I will share the journey with you, because it is a habit that I still need.

I went to the doc today because a sore throat kept me up all night. I just have some infection in my throat and sinuses. With a few antibiotics I’ll be on the mend. I feel like hell, okay? I’m only up now, because Mark (family friend, lives close) signaled with his gate bell, that he was dropping off provisions, along with a mocha from my Aunt Judee. I couldn’t get back to sleep. I got up to see if no news was still good news—yes, it is! That means no evil attacks about the estate today. Someone spread the “rumor” that there was going to be a sale here this Saturday. Friends and family think the rumor was spread just to worry me, ahhhh, success for whoever started it!

I feel like such a scholar; I added “Judee” and “ahhhh” to the dictionary! There’s just something empowering about adding words to a dictionary… my personal dictionary on my computer…but STILL!

Finally, I changed the auto insurance to only cover my truck. One more thing done. Oh, that would be two, as I also called to get paperwork started for a small pension.

From the long, wide deck overlooking the back yard and acreage; A little after 8 P.M., and here comes that moon, right on time. That was my entertainment last night; watching as Jupiter chases the moon up the hill and over the tree tops. Much better than My Name Is Earl—sorry, Paul, but anything is better than Earl. I just realized that the moon actually rises in front of, and then above Jupiter. When the moon finally takes the lead, Jupiter resumes the chase across the sky. That’s way better than that episode when Earl got stuck in jail. I do not miss television. I would watch unlimited hours to have Paul back.

#####################################################

Thanks for being here,

Patti


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EDDD 13; Waking Up To 8 Strangers In Your Room

 

Notes from a memoir in making…

Crap, the alarm didn’t go off. Okay, maybe it did, but I just set it two hours ago, so maybe we both slept through it. So, here I am on this cot next to Paul’s hospital bed, hair going every direction, eyes still stuck together and my brain on sludge mode. Without the elixir of life (coffee), and with a full bladder, I have to wake myself up enough to answer specific questions and protect Paul from cruel and unusual poking and prodding.

In a teaching hospital, this happens 5 days a week. Waking up to strangers in your room, and not screaming, “Get out!,” is an acquired skill. You can tell who the doctor is, because he or she is usually a snappy dresser, and freshly showered. The students either look intimidated by the doc and exhausted, or they look attentively up into the doc’s face, have brown noses and try for the matching snappy look, with a semi-pressed lab coat.

Either way, it is game on. Once in awhile I can get them to check back later, but usually they are in a hurry and won’t can’t change their routine. It is amazing how different their behavior is when I’m just waking, and still in bed, compared to when I’m dressed and alert when they arrive. I know they are not the enemy (at least I do on my good days), but I still have to make sure the facts they are using to decide Paul’s meds and treatment, are based on what he and I know to be the reality.

Paul is groggy, but always humble and accommodating. He knows I’m listening, making notes and generally on top of it. This is the best gift I can give Paul, who is on his 6th or 7th plan B treatment to try and stop the aggressive attack of Graft vs Host disease. The gift is allowing him to not have to remember medications, side affects and his vital statistics. If there is an issue to be discussed, he can lay and listen, while I rattle the cages to correct or get more information about his treatment.

I grab a hair clip, my notebook and pen and another day begins.

~~~~~~~~

Frosty garden colors and the end of the primrose. PHALL PHOTO 2013

Frosty garden colors and the end of the primrose.
PHALL PHOTO 2013

It’s almost midnight and I’m happy to report that I made it through another dreaded Friday the 13th. Personally, I think it is a lucky day. Turns out, I had neither dread nor luck today…but isn’t that lucky?

Thanks for hanging out,

Patti

Every Damn Day? Who’s idea was this anyway?

From writing challenge Every Damn Day December at http://treatmentofvisions.com/2013/11/26/evdadadec/


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Book Review: In the Body of the World: A Memoir, Eve Ensler

 In the Body of the World: A Memoir

 

In the Body of the World by Eve Ensler
Patti Hall’s review on Goodreads and Amazon

Oct 12, 2013
Recommended to Patti by: Elaine Mansfield
Recommended for: *Cancer victims and survivors. *Anyone with a female in their life.
Read from September 10 to 28, 2013, read count: 2
*I easily concede that this may not be the right book for everyone. I know that I would want to read it if I had cancer, but it may be too raw for others. Ensler does not filter out the horrendous things done to her body during her fight against cancer, nor the horrendous things done to the bodies of females in the Congo. I strongly value the message of hope that she brings to both subjects. Oh, and the “V” on the cover is not an accident.
Any possibility of love and respect for her body was taken away with the violation of it by her own father. Eve Ensler kept her body busy though, with good, bad and ugly actions. Years later, she began talking with, and interviewing women about their bodies. Part of the discussion was about how they could value and protect their bodies. Ensler wrote and published the Vagina Monologues and performed the play on stage. Her character portrayals are pure art. Other artists took on her role. The result of all that wondering and questioning can still be witnessed on campuses and theaters across the country. Ensler continued to interview women from every walk of life, and from around the world. There was only one thing that stopped her, or I should say, refocused her.
The plight of the women and girls of the Congo gave her a new focus. The Congo is a place where the rape, pillage, murder and destruction of females, from infants to grandmothers, are rampant. These crimes against humanity take place in collusion with the destruction of the Congolese earth. These crimes take place in order to mine the earth’s natural ingredients, which feed the rest of the world’s lust for resources and technology.
Not long after Ensler began to envision and ignite solutions with and for the women of the Congo, she encountered the destructive force of cancer within her own body. While the Congo women and earth continued to be attacked, Ensler was forced to retreat (although never out of contact) and fight her private battle. And a horrendous battle it was. Ensler writes about it like a gentle, yet ferocious mother. She writes in awe of the mighty foe. Her writing invokes a woman who is, at once, humble, brave, weak, passionate and grateful. As if that were not enough to compel readers, Ensler is also generous with her unvarnished honesty.The City of Joy is being built and run by the girls and women of the Congo. It is its own powerful force, envisioned and ignited by Ensler and her circle of supporters. When Ensler and her doctors were done slaying her cancer dragons, she went right back to The City of Joy. She continues to travel the world to garner funds for the V-Day movement to end violence against women and girl’s bodies. This daunting challenge is no less heroic than the fight to save her own life.

The loudest lesson Ensler offers her readers is hope.


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Midlife Collage Contest Essay, “Love, Laughter and Loss”

sunset, moon, coastguard

Sunset Moon & Coastguard Tower, Westport, WA
PHALL PHOTO 2013

As usual, the photo is unrelated to the text :>) I hope that the Coasties love this one. More photos of mine at phallphotos.wordpress.com 

One of my stories is in the  Midlife Collage contest this week (Monday through Sunday). It’s called “Love, Laughter and Loss” and is up against four other short stories. It only runs until this Sunday.

http://midlifecollage.com

This contest pays $50., but it asks more of the reader/voters;

  1. Facebook “likes” count a lot in the final judging. So, please click the Facebook link at the bottom of my story—it looks like a thumbs up.
  2. Please leave one of your thoughtful comments at the end of the story. Comments count for judging, only if they are more than a quick, “Great story!” What emotions, memories, thoughts came up when you read it? What did you think about the quality of writing? Was it descriptive enough? Logical beginning, middle & end?
  3. Please go to “Closing Arguments” (at the top of each page, in the header) and convince the judges which story should win this week and why. I usually copy and paste my comment from the story I want to win, then make it stronger for the judges.
  4. For you to “qualify” to give the judges your opinion in the “Closing Arguments” you have to click a box that says that you have read at least 3 of the stories.

Thank you for taking the time to do this for me.

Patti


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Souvenirs from My Heart; Postcards-Ten

Mural

Mural on Building In Westport, WA
PHALL PHOTO 2013

Here is the 8th installment of the serialized version of a section of my memoir, Souvenirs from My heart; The Patient Patient Advocate. We load my truck with Paul and his symptoms and head to the after hours clinic one last time.

Postcard 1 here.

Postcard 2 here.

Postcards 3 & 4 here.

Postcard 5 here.

Postcard 6 here.

Postcard 7 here.

Postcard 8 & 9 here.

cont. medical history document…

July 21, 2008 2:30 P.M. (Four months after the all-clear from the oncologist.) We went to the urgent care clinic to have a doctor look at the red spots that had recently developed on Paul’s feet and legs, and with the hope that they had something better to help with Paul’s difficulty breathing and itchy eyes. As usual, we went out in the hallway and waited for his name to be called—we didn’t want to be exposed to other people’s illnesses. After briefly speaking to the doctor on duty, Paul was sent down the hall for chest x-rays and blood draws.

 

We spent more time waiting outside of each lab, and then went back to the chairs in the main hallway. We sat flipping through magazines and sharing things that we discovered. Paul had the peculiar habit of reading magazines backwards. It drove me crazy, but always led to some fun teasing back and forth. (This sudden and incredibly vivid memory brings a smile to my face. It feels like it was just yesterday; like I had a visit with Paul.)

 

The receptionist finally called Paul’s name and the doctor led us into an exam room, carrying a small stack of lab results. The handsome young doctor had been confident, friendly and attentive to Paul’s medical issues when we spoke with him more than an hour and a half earlier. Now he was clearly shaken up, telling us that he had called in a consulting doctor, because Paul’s WBC (white blood count) was over 200 k. When he told us the normal range was 4,500-10,000, I felt light-headed, and Paul just stared at me (as if I held the answers he wanted to hear). His other lab values went too far in the other direction. I asked what that meant and the doctor said that he would rather wait and talk to the other doctor first.

 

A nurse came into the exam room to draw more blood.  I noticed that Paul was starting to look pale. I calmly told the doctor that I thought Paul was going to have another “episode.” I had already witnessed two, and I knew the subtle signs that even Paul did not recognize. When the doctor asked Paul if he was okay, Paul quietly said, “Yes.” I stayed calm, but insisted that he was not okay, that he was getting worse quickly. Assured by Paul, and ignoring me, the doctor left the room.

 

As the door clicked shut, Paul said he was a little dizzy—the very words he said before his last two “episodes”—followed by instant burning hot skin, wracking chills and profuse sweating. These signs were at least as dramatic as they sound. I had the nurse hold onto Paul, and then I threw open the door and loudly ordered someone to call 911. As you may recall, the last time (16 months earlier) that this happened here, Paul’s own doctor sent me (with only the help of another waiting patient) to get Paul into my truck and to the hospital. This action doesn’t really fit my usual personality, but I wasn’t taking any chances this time.

 

Postcard 10:

 

Health is such a blessing. We aging baby boomers seem to end up with more visits to the doctor, so why not be ready? Like young parents who drag a diaper bag everywhere they go, let’s make an appointment bag. Have it in the car or on the coat rack by the front door. Add a novel, puzzle book, or magazine, a notebook and pen. Add a bag of raisins, dried fruit, or nuts, and a bottle of water. Add whatever would help you stay calm during the minutes and hours of waiting time in medical offices. Be creative!

 

Other notes:

***The postcards are nearing the end (2 more), and then I hope to have some good news to tell you about them.

***From my last post: An article I wrote about the beginning love affair with my blue-eyed man has been selected to be in a PAYING contest later this month! Get your voting fingers ready again. 

***Again: Watch for Monday’s selection of pictures and quotes from some unusual reading places and habits of THE WRITE PLACE community members. That’s you, peeps:>)  Send your photo and quote to my email below.

***A NAME: My youngest sis suggested that we make the reading photos and quotes a regular feature here. “Reading Place” fits well with the blog site title, so that’s what we’ll go with. Thanks for all the great suggestions!

Email photos and quotes to me at: 1writeplacewordpress at gmail dot com

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

Patti


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Souvenirs from My Heart; Postcards-Eight and Nine

Net Spool and Seagulls Westport Marina, WA PHALL PHOTO 2013

Net Spool and Seagulls
Westport Marina, WA
PHALL PHOTO 2013

Here is the 7th installment of the serialized version of a section of the memoir, Souvenirs from My heart; The Patient Patient Advocate. Paul has strange new symptoms,  another “episode” and we spend our last night at home for several months.

Postcard 1 here.

Postcard 2 here.

Postcards 3 & 4 here.

Postcard 5 here.

Postcard 6 here.

Postcard 7 here.

cont. medical history document…

July 14, 2008 The dentist verified that Paul had badly inflamed gum disease, with infection in his upper gums; his 4 upper front teeth would need to come out once the infection was eliminated. The dentist had never seen a disease progression as rapid as Paul’s. We set up a care program for home and a schedule to have the dental work done, beginning the following Monday. The dentist suggested that we go straight to an urgent care clinic to get prescriptions for relief of the stuffy nose and the gum infection. We did so and the clinic doctor gave Paul a prescription for an antibiotic and antihistamine. Paul saw no relief at all from these medicines over the next few days. We cancelled his dental appointment, since he wouldn’t be able to have the work done as long as he could only breathe out of his mouth.

July 18, 2008 Paul noticed red spots all over the tops of his feet and the front of his legs while taking his evening bath.

Postcard 8:

We now know that the red dots on feet and legs are another red flag for leukemia, especially in older men. We later heard of an older male in-law who died within weeks of seeing the red spots, because he never sought medical advice.

We called and talked to the pharmacist who had filled the prescriptions. She didn’t think it was an allergic reaction, but suggested that Paul see a doctor about it if we were worried. She seemed unconcerned.

July 20, 2008 The red spots were still covering Paul’s lower extremities. He stopped taking the antibiotic, just in case. Later that day he noticed a large, deep bruise on his inside forearm. We had no idea where it came from. For some reason, that one bruise, on top of everything else, really shook us up.

Almost a year earlier Paul hit his ankle with a piece of metal and it never completely healed…he did show it to his PCP during a routine exam, but his doc just shrugged his shoulders and mumbled, “Huh?” By July 20th, Paul and I were both confused and worried about his mounting symptoms. In my journal entry the next morning, I wrote, “We don’t know what’s happening with P’s health, but we held each other all night long. No late night TV. None of our nighttime silliness or midnight snacks. Don’t have to say a thing. I know that we’re both worried as hell. When I got back  in bed from peeing at about 2 a.m., he pulled me close to his chest and held on ‘til morning.”

That would be the last night for months that we slept in a bed together. It would also be one of our last good night’s sleep.

Postcard 9:

This postcard is a reminder to jot new or unusual symptoms in a family or personal calendar or journal. Between getting older, and the emotional confusion, should a medical crisis happen, it is easy to forget important little health details. Better yet, keep a family medical journal handy. What a time-saver if it is ever needed! You can buy these or make your own with online forms that you can print out at home.

////only 2 or 3 more installments////

Other notes:

***The postcards are nearing the end, and then I hope to have some good news to tell you about them.

***An article I wrote about the beginning love affair with my blue-eyed man has been selected to be in a PAYING contest later this month! Get your voting fingers ready again. 

***Watch for Monday’s selection of pictures and quotes from some unusual reading places and habits of THE WRITE PLACE community members. That’s you, peeps:>)  Send your photo and quote to my email below.

***My youngest sis suggested we make the reading photos and quotes a regular feature here. What shall we call it? How about, “You Read Where?” or “Where Do YOU Read?” or “Reading Places” or “Places I Read”  I don’t know, you guys come up with something, or do you think I should do all the work around here? Don’t answer that:>)

Email photos and quotes to me at: 1writeplacewordpress at gmail dot com

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

Patti


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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-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

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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.

 


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A Piece of Our Story in Poetry

This is a piece of our story; the man I knew. This was written 11 months before cancer entered our lives.

20 Aug 2007

Paul teased me about writing a book for him, instead I wrote this poem for his 60th birthday.

Book of Paul…

He is everything wonderful that I ever needed,

handsomely wrapped up in one big tender man.

His rolling laughter leads to coughing fits;

spitting up water and vitamins,

and then falling off the bed!

A prankster to his core,

full of special surprises for all.

A memory-maker, his camera always within reach,

he records the Kodak moments of our lives.

His cards & gifts & little notes come from the heart,

and always meet their target.

He loves easily and deeply…

his children, grandchildren, his friends & me!

He would love to be a millionaire,

but he lives well, and is generous with what he has.

His tastes and beliefs are “traditional”,

yet he has an open mind and can embrace the non-traditional,

except food, of course!

He loves Taco Time, Nascar, animal shows,

Funniest Videos, Cops and bad sci-fi movies.

Every day he says and does funny or special things for me,

he can calm me with only a look, or a touch.

He wants us together, no matter what,

and turns every errand into a “date”.

He acts crabby sometimes,

but just below the surface is a joke or a prank or a smile.

He notices the little things,

and always says “thank you”.

For a T-shirt and jeans guy,

he sure is a clothes horse!

He gives hugs and touches often,

he sings seriously and dances with a laugh.

Happy Birthday… With All My Love,

Patti

© Patti Hall and https://1writeplace.wordpress.com, 2013.