So, where were we anyway? Oh yes, New Year’s Eve. Don’t be mad, but all I have time for right now is a quick update to let you know that Juneau was fantastic and mom is well.
I have a lot to work out before I will be back to my normal, un-normal postings. Can hardly stand to post without a photo, but I haven’t found the time to a) get wifi going on my laptop or b) use this computer (mom & dad’s) to do my photo downloads on. Love the little learning curves that life tosses now and then.
The good thing about the learning curves, is that I usually feel pretty good about mastering them. Even when it is a total accident that I manage to make it through to the other end, I still get to say, “YES! I did it!”
Just like my recent Craig’s List success. Pure luck. With so many sick and scary stories about CL, I feel extremely fortunate that mine turned out so well. Only a few days before my flight out from Seattle, to my layover in Juneau, I posted an ad for a driver. The reply from Brian sat in SPAM hell for a day before I found it, but once we connected all went well.
He sent me a photo of his driver’s license and a couple references and I fell into instant friendship with him and his partner, Kathy, after we talked on the phone for only a few minutes. Brian picked me up from the airport and we spent the next few hours chasing the light:>)
With great advise from Kathy, we started with sights that needed daylight to appreciate them (the glacier), then we moved on to sights that were better after darkness fell (the spectacular lights in town). Photos soon!
The other half of this update is to let you know that mom’s hip surgery went well and she is expected to be home Monday. Sister Laura is with her this morning and brother Michael spent several hours with her yesterday. Dad took mom into the hospital in Anchorage at 5 a.m. yesterday and wasn’t home until after 9 p.m.
Now I have to confess that I haven’t been to the hospital to see mom yet. She’s fine with it, and insists that she wants to sleep and wants our help at home. Dad says she just wants to be alone to watch football:>) Anyway, my asthma was so bad and I was pretty wiped out from my whirlwind travels, that I have been here at their house the whole time.
Even if I went to hospital, they’d kick me out because of these asthma attacks. So, that’s where we stand. Dad & I hanging out and making things cozy and clean for mom’s return.
I can’t wait to get the photo issue dealt with, because I have so many cool things to show you. Stay tuned:>) Oh, and I promise to get back to the Mrs. M’s son and New Year’s Eve story:>)
Please help me set the universe back on track for a good 2014 for Luanne and her kitty. xo
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
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?
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).
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.
Hummer & Fireweed, From front porch of former home, snapped 2 days ago. 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 notyour 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.
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.
Butterfly on flower in my friend’s garden. Phall Photo 2013
First, I want to thank those of you who read and commented on my essay, “Runaway Writer Found on Beach, Heart Broken, but Alive!” It will be up at http://www.gutsyliving.com for the rest of the month, then voted on August 1-14, and winner announced August 15th.
Souvenirs from My Heart; Postcards-Two
“Leukemia and other cancers do not seem to strike sick people.” This is a direct quote by me, with no qualifications whatsoever. Yes, this is only my personal conclusion from anecdotal evidence. (Remember, no statistics here.)
My conclusion comes from the hundreds of stories and memoirs I’ve read in the last five years. It comes from the many patients and caregivers that I met during our year in and out of hospitals and clinics. Instead of being unhealthy, most cancer victims were like my husband; healthy, non-smokers who got plenty of exercise. Many ate healthy diets and logged daily hours running, biking or working out at a gym.
Cancer can happen to anyone, at any time. Sure, there are high risk groups for some cancers, like those caused by smoking, and those passed down through genetic inheritance. Sadly, I’ve heard and read repeatedly, “But she/he was so healthy.”
Being prepared might speed up your treatment, it might help make an accurate diagnosis, it could even save your life. If you can’t do what it takes to be prepared for yourself, do it for the ones you love. The ones who will have to go through piles of paperwork, make a lot of phone calls, and piece together the vitally important information that medical staff will need to help you.
Postcard 2:Please don’t live as if you were immune to bad things happening. I don’t believe that being prepared will bring the universe down against you. Being prepared is a loving thing we do for others, not especially for ourselves. Are all your current medications listed in one place, like your purse or wallet? Ask your doctor or pharmacist for a copy, then add vitamins and other over the counter medicines or supplements that you take to the list
///
To read SMH; Postcards-One go here. This is serialized version of a section of my memoir. It’s kind of serious huh? Hopefully readers will find enough value in the information I provide here, that they will hang in for the lighter sections.
Thank you for reading, please let me know what you think.
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 forSouvenirs 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.
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,
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
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.
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
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.
THE WRITE PLACE... 