A delicate leaf skeleton in a bed of moss, from a nature walk with Kevin last month. PHALL PHOTO 2014
First of all, I want to thank everyone who has read, commented, shared and/or “Liked” my posts, A through O, for the A-Z April Challenge. I’ve met a lot of new blog friends these last two weeks, which makes the whole thing well worth tearing my hair out, and trying to lift the alphabet to a new level of weird, interesting, and hopefully, entertaining.
I’m switching it up for P, by giving my writer progress update. It’s an exciting one for me. My priority project, which has sat on the back burner these long months of romance and caregiving and travel, is now in the hands of a reliable editor. More on that later.
Here’s the scoop and a reminder of the project:
Postcards of Action and Hope; Preparation for a Medical Crisis
A Preview Booklet excerpted from Book 2 of “Souvenirs from My Heart; The Patient Patient Advocate”
This booklet version is from a portion of my three-part memoir-in-progress. An edited version of this work was first published in serial form, here on my blog site, The Write Place. I have included selected comments from my blog community, using initials only. This booklet is not intended to slam the medical profession, nor will I be singing any inspirational happy songs. My intention is to inform and motivate readers to prepare an emergency medical file for each member of their household; to learn from the lessons my late husband, Paul, and I, learned the hardest way.
I intend to work the kinks out of it over the next few months. It will still have to be formatted for ebook and hard copy distribution. Still many decisions to make and actions to take, but we’re closer! I will probably be asking some of you veteran’s for some advice along the way. Of course, I’ll be sharing the journey, in hopes of helping the next writer in line.
Thank you for your patience,
Patti
Hey, I hope you find time to check out some of the other A-Z April Challenge blogs here:
From the front porch, Eagle River, AK PHALL PHOTO 2014
Alaska weather, mom’s new hip, photographic opportunities, smoking status and maybe a little romance.
ALASKA
The weather here has been weird. Almost all (not by Georgia standards) of the snow is gone, but we still get some nights of frost that don’t thaw until late in the day. While most of the rest of the country is suffering severe cold and snow, we have a temporary reprieve.
Out the kitchen window: a grove of beautiful birch trees, with a few fir and cottonwood tossed into the mix; recently snow-laden limbs, now free of their heavy white burden. Out the window that is above the kitchen table, is dad’s Quonset hut; once shrouded in a thick layer of snow and icicles, but now down to the rust-colored metal. Out the living room window: the front yard and the busy road to/from Eagle River; the regular work of the big colorful road plows is done for now. Everyone is guessing when and if winter cold and snow will come back.
Every single day, no matter the weather, I revel in the way that the changing light of morning, mid-day and evening touch the sheen of the birch tree bark. I have seen those trees almost neon white, and with more subtle shades of pink, purple, red and blue, depending on the tint of moment.
The longer I’m here, the more I notice that I move from window to window in this small house, no matter the original purpose of entering a room. I look out the window as I enter, and then again before I leave. I’m looking for that light. I’m watching for a moose, a bear or a flutter of wings that announce a flock of Wax Wings or Northern Grosbeaks.
Maybe I’ll spot that stealthy fox that I used to see around midnight, when I sat freezing and smoking on the deck. Often, what I see makes me rush to throw on something warm, and maybe some boots, grab a camera and head out to take a shot, or two, or twenty of the light hitting the trees. That light. That moment. Sometimes even, that second.
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The health status. It seems very much as if mom, dad, and I are trading our minor illnesses back and forth. Cold and/or flu symptoms are flying around and landing on one of us, until it morphs and moves on to the next. Our sleep patterns are crazy. Despite all of that, we’ve had days where I play DJ and we listen to the old music that we all love, and days when we laugh a lot. Yep, we also have some grump days and cry days; missing our Michaela or bruised feelings.
Meanwhile, mom’s new hip is doing all those healing things that make each day one level of challenge or the next. The pain meds are not being used much at all, no matter the challenge level. Home health nurses are no longer coming to the house. Eventually, mom’s doc will allow her to do outpatient PT, but for now he wants her to take it easy. We’re hoping that the blood thinner medicine will end soon and that mom won’t have to go in for the weekly blood draw. The walker is her pal and she has a hard time remembering that it will be many months before she is allowed to bend over and pick something up.
SMOKING– Nope, not me. 20 days. I’m awesome:>)
THE ROMANCE– oops, no time to report on this right now. All is just peachy though!
It has been nice to be home this week, but Mrs. M. has called and I will be returning to Oregon tomorrow. One last, late afternoon visit to my beach, and I collected some sand to make her a beach scene in a glass dome. She loves the beach too, so I will take her one of her own. (Beach therapy in glassware)
The driftwood bull carving was still there and I told him how much you all enjoyed him:>) Here are a few other beauties and oddities that I gathered with my camera today.
What? Don’t ask me… PHALL PHOTO 2013
PHALL PHOTO 2013
Results of stormy weather. Some incredible finds. This is my therapy and I see stories here too! PHALL PHOTO 2013
PHALL PHOTO 2013
Beach art. Another view, still odd. PHALL PHOTO 2013
I could actually smell winter at the beach today. I didn’t last long outside, but found some pretty beach glass, a Westport moonstone (round, smooth, clear rock), a heart-shaped stone and a piece of petrified wood. No agates, but still, some goodies to make Mrs. M.’s mini-beach!
Have a great week and I will be back online as soon as I can.
Friday was busy and full of smiles and hugs from Sara & Jon and the little grands. I am so glad that it worked out that I could watch the my gr’daughters get their awards before I headed to Oregon.
It was a beautiful fall drive from Washington to Oregon, and my truck remembered how to get back to the nursing home just fine. I spent some time with Mrs. M at the nursing home, and then I followed her gr’daughter over to Mrs. M’s duplex. It is a 2 bedroom in a little community near Gresham. After the gr’daughter left, I unpacked and did a little freshening up around the place, then went to explore the area in my truck.
Yes, I did get lost once, but it was worth it. I now have a better idea of where I am and where most of the places that we may need to go are. Mrs. M doesn’t drive, and I know that it’s hard for me to get to know a place if I am a passenger. I bought a map:>)
I made it back over to the nursing home the next morning with no wrong turns. Mrs. M was ready to go, after fond farewells with her roommate and the staff. It was obvious that she was well-liked there. I packed her up, and when her gr’daughter got there, we left. By Saturday afternoon, Mrs. M and I were as settled in as two strangers could be. She seems to take well to changes and is amiable about the big and little things. Ahhh, that makes things easy for both of us.
White Picket Red Berry Gate Wood Village, OR PHALL PHOTO 2013
Sunday & Monday
Mrs. M and I had an exciting day and evening yesterday. The nursing home sent a nurse to look over the meds and check her vitals. We should also have visits from physical therapists in the next few days. We were sitting here filling out some papers after the nurse left, and we heard a loud boom; the electricity went out. With Mrs. M’s directions, I found the flash lights and batteries, but didn’t have the right batteries for the radio. We still don’t know what happened, but we were in the dark for only an hour or so.
Once the power came back on, I turned the thermostat up to get us warm. I smelled something burning and got up and looked around. It was coming from the wall heater, so I turned it back off. Then 3 smoke alarms started screaming out. I turned those off and Mrs. M called the landlord; he got here pretty quickly. It turns out that dust build-up inside the heater caught fire. As he was testing the heater in my bedroom, it started smoking too and set the alarms off again.
Please vacuum out your heaters for winter use. Might as well check your flash lights and emergency radio for batteries while you are at it.
PHALL PHOTO 2013
That was our crazy Sunday. Yesterday I took a long walk around the neighborhood. I had my camera and found some of the season’s last flowers and some other great colors and textures to take photos of. We had a big plan to go get groceries, but at the last minute, Mrs. M’s back pain flared. She called the gr’daughter to come over while I ran our errands. Yep, got the batteries. It was nice to be back in Oregon, where an attendant pumps your gas. Everything else feels pretty much the same as Washington.
My little grandson, Tiven has been gone almost 6 months, and November 3rd would have been his 4th birthday. I have been fighting tears for several days, but yesterday I was able to get away and let them come as they wanted to. I miss my little guy every single day. That’s all for now.
Autumn Rose for Tiven. 3 Nov 2009-26 Apr 2013 PHALL PHOTO 2013
Let me know how things are going with you. Still getting our routine down here, so I haven’t got back to editing the memoir postcards. Not online much either.
Tomorrow (Friday) I set off on a new journey. It may take a week, a month or maybe longer. The timeline is open and so am I. I’ve detailed my truck, except I need to vacuum it. I’ve re-potted and watered my houseplants. I stirred the compost pile and planted the lilac and rose by the fence, and a handful of mini-crocus near the pond’s edge.
I’m fairly certain that I can come home once a week. Mrs. M.’s grand daughter lives near and should be able to manage a day and night with her. It’s over 300 miles, round trip, so I hope I can break that into 2 days. I’ve got the edited hard copy of my Postcards manuscript packed and I’ll also be working on the middle book of the memoir series. I’ll take my laptop, but I will hold off on taking my printer until I have a better idea of how long I’ll be needed.
The biggest thing I will miss is my little cave/home (Maggie) and the beach. It will just be the two of us and I’ll have my own room, so I can still be a part-time cave woman:>) I look forward to getting to know Mrs. M. better and seeing what mischief we can come up with in Portland. I’m certain to get a better schedule going and get outside more often.
Journaling is a strong habit for me, so I do plan to journal about my time with Mrs. M. I know I’ll take a lot of photos of my new surroundings. I am sure that I will be online and checking in with all of you at least a few times a week. As you can tell, until I get settled, everything is up in the air. That would frustrate many people, but I really look forward to the mystery of it. I am very adaptable and change doesn’t bother me.
The big difference with helping out this time is that I don’t know Mrs. M. I have met her maybe 3 times over the years. She has passed the main part of physical therapy and does not need a lot of assistance there. Also, there is no stress or heart break related to her care. She may be almost 91, but she is mentally sharp and physically on the mend.
These links will take you back to the posts where I talked about this new adventure and my other caregiver experiences.Here and here.
Did you notice that I changed to a static “home” page? Check it out when you get a chance and let me know what you think. I am still working on the site…
An executive caregiver position came open many years later. (No phone call this time.) By then, my children were out on their own and I had divorced their step father. I was 4 years into the best relationship that I could ever have imagined. And then, my partner in life and business, was diagnosed with leukemia. I became Paul’s 24/7 caregiver. The hats I wore covered all aspects of our lives during the year of his illness, treatment, stem cell transplant, our hospital wedding and his final battle with graft vs host disease. We were fortunate to have a strong group of supporters in our family and friends. We all learned so many lessons during this time, that Paul and I began to plan a book about it. My 3-part memoir series of love, illness and loss is a work-in-progress.
I readily admit that nepotism was involved in my next caregiver position. The patient was my mother. My family (2 parents in their 70’s, and 6 siblings in their 40’s and 50’s) were still reeling from the loss of my sister in February 2012. Two months later, my mother had an accident that left her with two broken arms, 2 black eyes and a variety of pain, from head to toe. Yep, I got the call. I was back on an airplane heading north. It had only been five weeks since I returned home from Alaska after my sister’s death,
When I arrived back in Alaska, my brother picked me up and took me straight to the hospital. I stayed in my mother’s hospital room that night, and we took her home the next day. Mom was unable to care for herself at all. I became her right-hand and left-hand person, and slept beside her at night. I would like to break off and tell you what an amazingly strong woman my mother is, but I will leave for another day.
Two of my siblings live nearby and they circled the wagons to provide support and relief. I stayed in Alaska 4 months and wore many hats while I lived with my parents. My most rewarding role was that of adult daughter to my parents, but the second best was that of caregiver to my mother. I was also able to spend some special time with 2 of my sisters and their families, as well as both of my brothers. I flew home to Washington in August, on the 3rd anniversary of my husband’s death.
A holiday bonus. The patriarch (I call him “dad”) sent Ms. Daisy (mom) and I on the vacation of a lifetime in late November 2012. I joined my Alaska family for Thanksgiving, then mom and I toured the Hawaiian Islands for weeks. We spent Christmas and New Year’s with my Arizona sister (it was her twin who we lost earlier that year) and her family. Mom flew home from Washington in January, after visiting her sister and the rest of our Washington family. [3 months later my grandson died and mom flew back to Washington to mourn with, and nurture our family here]
To make a long story short (hahaha), I received another call. It was the call from my sister that I wrote about in the first paragraph of Part 1 of this post. I’m still not perfect, but I guess I will keep on practicing this caregiver role, until I get it right. I am looking forward to this new adventure of giving care to Mrs. M. in Oregon.
I’ve taken some time this week to ponder the meaning of these calls-to-action that keep arriving in my life. They seem to be bridges to the next part of my journey, rather than minor side trips. So, now I have to wonder where this next bridge will lead me…
You can be sure that when I get the call that Mrs. M is being released, my laptop, printer and works-in-progress will be traveling with me, so please hang out for more.
How will you answer the call? Has a caregiver call been a bridge in your life? We would love to hear your thoughts and experience (in the comment section).
Holding You Up A bronze statue on hotel grounds in Kauai, Hawaii PHALL PHOTO 2012
by Patti Hall
They Say That Practice Makes Perfect
Technically, I wasn’t looking for practice or perfection when I answered my sister’s phone call from Alaska a few days ago. Just last week I was deep into my grieving cave-woman mode. Tuesday, I traveled about 350 miles (round trip) to a convalescent facility in Oregon. I met with the care team of my sister’s mother-in-law, Mrs. M. Yesterday I started cleaning, packing and planning for an extended stay at the home of Mrs. M. in Portland, as her caregiver.
Caregiver: Is This A Calling And/Or A Bridge?
My caregiver internship began within the parameters of my first parenting role when I was 28 years old. That’s what parents do, they give care. Care-giving starts when you wake up in the morning, extends throughout the day, and continues into the night. It is wiping snotty noses, changing diapers, feeding, clothing and loving those in your care. Care-giving is sleepily welcoming a tearful dreamer under your covers, and into your arms, in the middle of the night.
To further my caregiver qualifications, I answered the phone and agreed to join a caregiver group in California. A troupe of his sisters and nieces, gathered at the home of my maternal uncle, when he was in the last stages of his battle against cancer. We came from 3 states; sometimes one at a time, sometimes overlapping, but one of us was always at his side. Despite my uncle’s sad prognosis, he basked in the songs of this Florence Nightingale choir. The songs were expressed in our laughter and love. We nurtured, laughed, cried, reminisced and took care of his physical needs. It was the first time that I truly considered how fragile life is.
A few years later, an interim caregiver position came available via an out-of-state call from my children’s father, aka my former husband. His mother was in her 80’s, living alone and had recently been widowed. She was not doing well emotionally, although, she was physically fine. I packed my bag, drove 100 miles north and left my own family to fend for themselves (again). K and I had known each other for many years and we had remained friends.
K was in deep grief and needed help with the mounds of paperwork and legal procedures that come after a death. While her son handled his job and household transfers from Utah to Washington, I helped K negotiate the details at hand. The signs of dementia came on fast and I consulted her son over the phone. I took K to her doctor and explained our concerns. She was poked and prodded and tested.
I received a promotion. Along with K’s paperwork, legal matters and emotional distress (grief), I had to keep her physically safe. From herself. Household hazards suddenly loomed everywhere. She was a fragile child one moment and an angry woman in the next moment. By the time her son came, K and I were exhausted and traumatized by trying to navigate the chaos brought on by the changes taking place within her brain. I returned home and wished that I could have done more.
Stay tuned, Part 2 will be posted soon…more caregiver experiences and I ponder whether this role is a calling or bridge to the next step in my life.
Have you answered the call? We’d love to hear your story in the comment section.
Sunset fire with pelicans heading home on Half-Moon Bay, Westport, WA
PHALL PHOTO 2013
Secret garden
We have water! The little waterfall is flowing and Greg (neighbor friend) also put in a head that sprays a bell-shape of water in the pond. He has been placing beautiful chunks of petrified wood to camouflage the edge of the pond. I hope to do the plantings tomorrow. The sound of flowing water is so wonderful! Greg will work on lighting soon, although I have some pretty little metal tea light holders that I’m going to add tomorrow. We have a long way to go, but getting the water flowing was a great motivator :>)
Writing…or not
I’ve done some book reviews on Goodreads here and Amazon here. I posted a lengthy response on Georgia’s blog about JK Rowling using a male name for her latest book here. I’ve also been active on Facebook here. I did a word cloud challenge from Zoe’s site here. The result, below, was written with ONLY the words from a specific “cloud” of words:
Stolen Breath
I swear, at present, I know fifteen ladies,
been living on the run, on the road, for years.
Not trying for truth or gods,
but breath.
Maybe you believe there was a stolen car,
a robbed bank,
but you would be at fault; wrong!
Truth is, maybe fifteen ladies
had a chap that robbed that breath…
Patti
What haven’t I done? You wouldask! I haven’t worked on the memoir, or the postcards book. I haven’t posted my new features for writers and caregivers. I’ve written the first couple of them and they sit and wait for me in the drafts folder. I just seem a little emotionally hungover from August and, well, stalled.
So there you have it. Hope you stop in and say hi, maybe tell me what you’ve been up to. Tamed any lions lately?
From my country drive a few weeks agohere. Tan Furry Steerette (not official species name). Maybe it’s the teats, maybe that soulful look, but I love her. Cannot have steerette where I live. I’m so glad that she has that awesome rack (horns not teats) to keep those bad boys away…when necessary:>) I was very sad when we had to leave these new friends behind. I wish they had internet.
New Features & Reflections of Memoir
I have not received enough reader photos here and here to keep that feature going, so I am working on 2 new features that I hope will be more popular and useful. One is for caregivers and the other is for writers. Both of my new features are written as “Postcards” since that seems to be in keeping with my “Souvenirs from My Heart” memoir series. I intend on carrying that theme through all my writing, as it is such a big part of my former and current life.
I wanted to get the memoir postcard series herepublished this month, but this has been a rough month for me. As you might imagine, my emotions are pretty raw, and time spent on the memoir has been ripping off old scabs. I hope that the caregiver and writer postcard series will give me a short break and allow me step back and breathe for a short time. Both of those series are meant to help others, and that helps me get out of my own emotional way.
Reflections of August
Tomorrow, the 27th, is the anniversary date that Paul and I celebrated our new life together. He would always tease me about my bold, “Why don’t you call me sometime” gesture at the pig roast in 2005 where we were re-acquainted. The 28th was the day of his memorial. What a day. I raged in my journal about how that day was supposed to offer some “closure,” but all it did for me was make my grief worse, because it made Paul’s death so real and so final.
I will certainly be glad when August is over! With Paul’s deathday, birthday, our anniversary and his memorial in the same month, it is always hard. Leaving our home and gardens for the last time, this past week, added more to my heaping pile of emotions.
The bright sidecould be, that it is all over in one month of the year. I (with lots of help) am building a new “secret garden” that Paul would love, from what I salvaged from our old garden. This year I also have my wordpress family to add to my supporting and loving circle of family and friends in “real” life. Thank you all.
Heaps of Goodness
Please continue to send all sorts of goodness to my WP friends, Ionia, Belinda and Marilyn, and my real world f/f’s who face serious health issues. For those in my circle facing emotional issues, maybe try what helps me most; give true and loving support to others:>)
I just got word that I did not win the last contest. A BIG thank you for those who took the time to read and vote on my story, “Love, Laughter and Loss” I did not win, but had the most, by 20!, facebook likes:>) Here is how the stories were judged. (I think I only had one person write to the judges.) http://midlifecollage.com/winner-circle/
Again, thank you!
Grani & the little grands taking a break after jumping on the trampoline with a sprinkler under it. My clothes are soaked! A hard day–Tiven’s service, and we all needed the comfort of our crazy family. Cora, Cameron, Nola
Do you have friends or family in a medical (or other) crisis? Who doesn’t, huh? How are you handling that? In my small circle we have dealt with some big ones over the last 4 years. I never did get my cape or badge or certificate, but I still feel I have enough real life experience and research to back my insights about these heart-breaking situations.
The biggest impact on giving comfort can be in what you do or don’t say. Skip the ubiquitous cliches and resist sharing your own similar, (but actually, completely different) experience. No one is in a hurry, so take your time and give some thought to each word that comes out of your well-intentioned loving mouth. Make it about them, (the victim or the caregiver) not you. “This must be so hard for you.” “I’m so sorry.” “I wish you weren’t going through this.” Like that, you get the idea; short, sympathetic and focused on them. And, no %^&* cliches! None.
The second biggest impact on offering comfort is not to make an ambiguous offer to help. Again, think first, before you even come into contact. Instead of asking your crisis-foggy-brained friend or family member what you can do for them, ask yourself what you would need. If you were in the same situation, what would you need? Then make a list of practical, helpful things that you are certain you can commit to.
List maybe 5-8 things. Like, “I have Tuesdays off, I can make a meal for your family and do some laundry for you.” “I can come over this weekend and mow the lawn.” Or clean the house, help you make a calendar of things to do, run errands on a specific day, or any day, if you are available. Do they have a patient care page set up online to keep family and friends in the loop without a lot of phone calls? Whatever will be the most helpful for their situation. Write your final five to eight offers and hand it to the caregiver or the patient. Make sure that all your contact info is included, even if they are your best friend, and you talked on the phone every day before the crisis. Foggy brains.
If you are not up to a big time or energy commitment, but would like to do something, offer to read to them. Or to sit with them for 1/2 an hour while their caregiver takes a break. Can you stop by and get their mail for them? Bring them a treat? How about be their secretary for an hour? Maybe a mini spa treatment; braid hair, rub feet, paint nails…you know them, what would they love?
Careful consideration of these two things can have the biggest impact on the care and comfort that you can offer a friend or family member during a crisis. I’ve read hundreds of books and articles on the topic, and the same two issues come up over and over again. We tend to say the wrong thing or we don’t offer specific, practical help. If nothing else, find 100 ways to say that you are sorry, and skip offering to help until you know what to offer.
I hope this helps you and yours, I wish none of us needed to know or use this information.
Patti
Feel free to add your suggestions, questions or comments. What did I miss?
Patti & Paul going to his 40th high school reunion. PHALL PHOTO 2006
Here is a completely related photo and the 10th and final installment of the serialized version of a section of my memoir,Souvenirs from My heart; The Patient Patient Advocate. This final post includes stays at three hospitals.
In the last post, Paul is taken by ambulance, to the first of three hospitals.
July 21, 2008 continued Paul’s patient-personality was already set; he was passive, unassuming, humble, and concerned for everyone else but himself. Therefore, this impasse between his loved ones and his nurse was pretty hard on him. Earlier that evening, he quietly asked me not to leave him alone at the hospital that night. Yet, he hated to break the hospital rules and upset the nurse. He wanted his daughter to go home and get some sleep.
We finally compromised with the nurse and settled down in the family waiting room, taking turns sneaking down the hall to be with Paul. Paul’s daughter asked the nurse for a couple pillows or blankets, but we got a lecture about more broken rules instead. She grudgingly brought some in…over an hour later.
When I sent for the Paul’s hospital, dental and doctor records a month or so later, I learned that she was the head nurse and that she wrote that I was upsetting the patient! This was ironic, because his daughter was forceful, loud and threatening to change hospitals that night. I was quietly in shock over the day’s events and upset for Paul being alone when he had asked me to be there with him.
At some point during the early morning hours, after Paul drifted off to sleep, I drove to our home and packed up provisions for Paul and me. I fed our dog and two cats (after explaining to them what was happening), grabbed business and personal phone numbers, tried to think of special things Paul may want, and finally locked the doors and drove away. It would be almost a month before Paul and I walked through that door again together. Even that would be just a quick, unauthorized visit, before moving up to the third hospital in Seattle.
July 22, 2008 The next morning, Paul’s oncologist allowed me to drive Paul to a second hospital, about 25 miles north, where he was admitted at noon. The oncologist, which Paul had seen for almost a year, certainly changed his tune; he went from being casually friendly at his office, to being brash, tight-lipped and unfriendly at the hospital.
Paul immediately had a bone marrow biopsy (aspiration) and a double Groshong port placed in his chest. When the results of the bone marrow biopsy came back, we were told he had Acute Myeloid Leukemia with 95% blasts (basically, 95% of his blood was mutating cancer cells). The nurses began what they called the “standard 3 and 7 chemotherapy” and we were relieved that Paul had few side effects from it. He was fatigued, a little dizzy at times, but was still walking to the bathroom and standing for short periods of time.
Postcard 13:
If you have any kind of similar medical crisis, Paul and I strongly recommend a port. If no one offers, ask for one. It is a minor procedure that saves, not only many repeated pokes, but you can sleep through medicine, fluid, and other intravenous changes. This is not medical advice, just our personal opinion. Research it for yourself and ask your doctor.
By this time, I have a notebook and pen nearby at all times. I question everything. Paul’s daughter and I write notes about questions to ask, answers, medicine, procedures, and we begin a long to-do list. I asked a family friend to start a patient care page, so I could keep family and friends in the loop. We asked his oldest daughter to put “temporarily closed” signs over all the large signs that lead to the RV business.
I made short trips home to gather documents and other paperwork that I needed for business and personal accounts to be dealt with. Every night I slept in a chair by Paul’s side. His daughter stayed a couple nights, but eventually had to get back to her family. His other two daughters stopped by for visits a few times. A few friends came for short visits.
I borrowed my cousin’s lap top and began studying for my unofficial PhD in leukemia. Less than a year later, I had a conversation with the lead doctor in Paul’s team about the recent peer-reviewed research article that he published. I took my job of advocate and caregiver very seriously.
August 07, 2008 After another bone marrow biopsy, we were told that the chemo treatment was unsuccessful (still 60-84% blasts, depending on who you ask, and which report you read).Paul’s oncologist sent us to a Seattle hospital on 08/08/08, my son’s 19th birthday. This is when we sneaked home for a few precious hours. Paul has 364 days to live.
Our home was surrounded by hundreds of acres of forests. We lived on a dead end street. Before cancer, we spent many evenings in the hot tub, which sat in the back yard. We listened to owls, coyotes and counted the shooting stars. Seattle stuns us; the noise, the population, the cement/glass/blacktop that surrounds us, and the speed at which daily life moves.
Paul joined a clinical trial at the Seattle hospital. After 5 more days of chemo, he was still doing well. The day 14 bone marrow aspiration showed only 0.09% blasts, and day 28 showed none.
August 15, 2008 After living in hospitals for weeks on end, Paul and I moved to an apartment in Seattle. We had to stay near the hospital, while he waited for a stem cell transplant and the next round of chemotherapy to keep the leukemia away.
Postcard 14:
I believe that patience is the character attribute that will do you the most good in this kind of situation. Be patient with others, but also be patient with your self. Wait it out. The anger, frustration, fears and helpless feelings will pass if you are patient. However, be actively patient. Knowledge is power and you will gain some power by knowing what is next, what the options are, and what exactly is the disease that has put you in this place at this time. That is why the first book I am publishing is actually the second in the series. It is the most helpful one for people walking this journey. Souvenirs from My Heart; The Patient Patient Advocate is from Paul and I to you.
The serial is over, but the good news is that I am publishing it as an ebook! I hope to have it out on Paul’s birthday, the 20th THIS MONTH! One can dream…
Other notes:
***This is the LAST POSTCARD and I apologize again for the length; blame my sis (again)—she’s so impatient!
***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. I JUST FOUND OUT THAT IT WILL BE PUBLISHED ON THE 19th!!!
***My youngest sis (the impatient one) suggested we make the reading photos, like the ones (here), a regular feature on this site. THE READING PLACE will be ready Monday! We have a selection of pictures and quotes from some unusual, cozy and crazy reading places, along with the reading habits of THE WRITE PLACE community members. That’s you, peeps:>)
Send your photo and quote to my email below. Email photos and quotes to me at: 1writeplacewordpress at gmail dot com Thanks for hanging in there, and your comments are especially appreciated.
Here is a completely unrelated photo and the 9thinstallment of the serialized version of a section of my memoir,Souvenirs from My heart; The Patient Patient Advocate. Paul has a 10 hour ordeal; the clinic, the ambulance and the first hospital.
In the last post, Paul just had another “episode.”
The nurse and I got Paul to the exam table and gently laid him down. I asked her to find some blankets for his body-vibrating chills. Both doctors and two nurses soon filled the tiny room. One nurse tried to get an I.V. line going in Paul’s arm.
The ambulance attendants showed up quickly and tried to get into the room; one grabbed the IV bag from a nurse and asked her step out of the room. The other nurse passed the I.V. things to an EMT and squeezed out of the doorway, while the second EMT directed the action from the threshold. The doctors and a nurse hovered in the background.
I held Paul’s hand and lightly caressed his face from my discreet position between the exam table and the wall. I answered rapid-fire questions from nurses, doctors and EMT’s. No one had been able to get a line in for an IV. Everyone in the tiny room was behaving confused and just on the brink of panic, and all of them (except one doctor) had already unsuccessfully attempted to get an IV placed. They couldn’t get his blood pressure reading either. They tossed ideas and suggestions back and forth around the room.
One of the EMT’s made the decision to try and get Paul to the ambulance. It was another uncoordinated scramble to get Paul from the exam table, onto the ambulance gurney, through the doorway, down the hall, through the waiting room, and out of the clinic doorway. There was little room to maneuver anything.
POSTCARD 11:
Stay quiet and out of the way if you want to be there for your loved one. Answer questions as succinctly as you can, then slink back into the woodwork; otherwise, you are out of there! There was one EMT and one nurse who wanted me out of the room. I could see it when their eyes fell on me as they assessed the situation. Then their eyes fell on the doctors, who had obviously allowed me to stay. I was allowed to stay.
Once inside the ambulance, but still in the clinic parking lot, it took the EMT’s almost 15 minutes to get an IV going. Everyone was visibly shaken. The foreheads of the EMT’s were shiny with sweat. There were fine lines of blood splattered in several directions. I just wanted them to get Paul to the hospital! Paul was still dazed, but he was responsive enough to humbly try to cooperate. (Paul was captain of our rural fire department at the time; a 29 year veteran, but these city EMT’s didn’t know him. They didn’t know that this was the love of my life either.)
At one point an EMT was so frustrated trying to get the needle placed, that he gruffly told Paul that he “just needed to hold still!” Paul weakly replied that he would try. I was shocked and told the EMT that Paul obviously wasn’t in control of the wracking chills that were making his body shake so hard. The EMT’s glare sent me to family-of-patient hell. I glared back through my teary eyes.
The second attendant made a final and successful attempt to get the I.V. going and they prepared Paul for transport. I went across the lot and brought my truck next to the ambulance, so I could stay close behind when they were ready to go.
When they eventually got Paul stabilized in the hospital ER, I went outside to sneak a cigarette and to call my family and Paul’s daughters. In between, I was reassuring Paul, making sure he was comfortable, and trying to get answers from the few medical personnel on duty. His middle daughter showed up just as we were taking Paul upstairs to his room.
Paul was finally admitted and in his room at the small hospital by midnight; we had left home for the clinic 10 hours earlier. This was the first time Paul had ever been a patient in a hospital. He’d just been through a harrowing experience. He had the hell scared out of him when he was told that he had an un-diagnosed, but life-threatening illness. He was exhausted.
I truly value the nursing profession, but the nurse on duty that night seemed heartless and cruel. Paul’s daughter and I tried to convince her to allow us to stay with him. We understood that visiting hours were over, but would she please consider that Paul had never been a patient in a hospital before, and had just been told he may die soon? Would she want to be left alone under those circumstances, we pleaded?
POSTCARD 12:
All medical personnel have a fatal flaw that you might as well hear about from me: they are human, damn it. That means that they get to have bad days. It’s just that their bad days are usually hidden by practiced professionalism. Sometimes the death, dying, sick, bleeding, messy, whiny, long hours, supervisor’s an a**hole and family life frustrations crack the facade. Sometimes their career path is so worn, that they forget to get off it when they realize that they are on the wrong path. Take a deep breath, use humor and kindness, and if that doesn’t work call in someone from the next rung up.
Other notes:
***The LAST POSTCARD is next, and then I hope to have some good news to tell you about them. I apologize for the length of this one; blame my sis—she’s so impatient! I am posting the last postcard tomorrow, the day four years ago, that I lost my Paul.
***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.
***My youngest sis (the impatient one) suggested we make the reading photos, like the ones (here), a regular feature on this site. THE READING PLACE will be ready Monday! We have a selection of pictures and quotes from some unusual, cozy and crazy reading places, along with the reading habits of THE WRITE PLACE community members. That’s you, peeps:>) Send your photo and quote to my email below.
Email photos and quotes to me at: 1writeplacewordpress at gmail dot com
Thanks for hanging in there, and your comments are especially appreciated.
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.
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.
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.
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.
Here is the 6th installment of the serialized version of a section of my memoir, Souvenirs from My heart; The Patient Patient Advocate. Paul’s trip to the ER eventually leads to an appointment with an oncologist…
A reader pointed out a good reason to have links to the earlier posts at the beginning, instead of the end. If you are new to the Postcards, you might want to read starting from Postcard One. None are very long, less than 600 words each, I believe.
In the ER, they filled Paul with IV fluids & antibiotics. He came back out of his unresponsive “trance” and seemed better. He didn’t remember anything since sitting in the clinic waiting room. After 5-6 hours, they let me take him home, with a vague diagnosis of unknown sepsis, and an RX for antibiotics. Paul recovered quickly once home, and was back to normal in a few days.
We followed up with his PCP the next week and a lot of lab work was done. The only thing found was mild anemia, which the doctor thought was odd…why did Paul keep showing anemia in blood tests? The doctor was still unsure of why Paul continued having fevers/chills, arm cramps and fatigue. Finally, he gave Paul a referral to see an oncologist. (This is when a secret fear began to gnaw at me. I was so in love with that man, the life we had, and the future plans we were making. For all that Paul told me, he was not having the same fear. Paul was 11 years older than me, but he was actually in better health than me. Another irony.)
Dr. Oncologist was booked and couldn’t see Paul until four months later. Then Paul began having regular blood draws and consultations with Dr. O. for eight months, the last visit was March 2008, when we were told that all was okay; he did not have to come back for a year. Dr. O. mentioned sending Paul for a bone marrow biopsy during one consultation, but the next lab report was normal, so it was not done. During another consultation Dr. O. also mentioned leukemia, but neither Paul nor I could ever remember the context.
Paul had been healthy during the next year (March 2007 to March 2008); with the exception of cramping arms, fatigue and heart burn. He had no fevers or chills since the year before, when he ended up in the ER.
July 2008 (4 months after oncology appointments end, 14 months since ER incident.) Paul has seasonal allergies and takes OTC (over-the-counter) pills regularly. However, during the first couple of weeks in July he was worse than usual and tried different OTC remedies, with no relief at all. He had no energy, very watery eyes, and was so stuffed up that he could only breathe out of his mouth. He was beginning to get the fevers and chills again at night, but not as severe as before. His teeth and gums had been bothering him and we thought maybe an infection there might be causing the sinus problems, so he made an appointment for a dental check up.
Postcard 7:
This postcard asks you to go back through the scenes above and see at which points we might have gone further or done something different. Again, I ask that you take notice and action when strange health things are happening, with no answers in sight. Should we have waited four months to see the oncologist? No! Would it have mattered? We’ll never know for sure, because not one medical professional has ever been willing to say that these issues had anything to do with leukemia.
Other notes:
I took the day off from gardening, at least physically; my mind is still designing away:>) I decided to post another installment to help ground me. I have so much writing bubbling up that I’m dizzy:>) There is an incredible amount of inspiration out there in blog land. There are writing prompts that bring up so many stories, and the real life stories of a variety of wonderful people. I have to try and keep some kind of focus if I ever plan on publishing though. The prompts are fun, but I’ve never needed a prompt to come up with ideas; stories are everywhere! It is especially fun when you are writing within a group of talented and funny writers. Back to the old grind stone for me:>)
Thanks for hanging in there, and your comments are especially appreciated.
THE WRITE PLACE... 