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Souvenirs from My Heart; FINAL Postcards-13 and 14

31 Comments

HIGH SCHOOL REUNION

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.

Postcard 1 here. Postcard 2 here. Postcards 3 & 4 here. Postcard 5 here. Postcard 6 here. Postcard 7 here. Postcards 8 & 9 here. Postcard 10 here. Postcards 11 & 12 here.

cont. medical history document…

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.

Patti

Author: Patti Hall

Writer, daughter, sister, mom, niece, grani, and friend. Works-in-progress; 3 children's books, some poetry and a memoir series, "Souvenirs from My Heart." Pursuits of happiness include gardening, walking the beach, reading, writing, photography, traveling and genealogy. I am a widow (2009), lost my sis in 2012, my aunt and a precious grandson in 2013.

31 thoughts on “Souvenirs from My Heart; FINAL Postcards-13 and 14

  1. WOW… says the impatient one! Its over 😦 You should be very proud! Your are an amazing writer. What a painful journey- thank you for sharing. I cant wait to read the book and share it. PS I love the picture of you two!

    • Thank you. I thought you would be mad that I didn’t take it to his last days. Now I have to get very busy to publish the ebook by the 20th!
      Thank you for being there.
      xo

  2. No… Im not disapointed even a tiny bit! That was beyond my expectations. like the awesome writer you are… you surprised me! I was expecting something different! NICE WORK!!! Thank you for not giving me what I expected- Im not ready for the end, I feel like I was given a reprieve. No rush on the book ..but NEXT….. XOXO

  3. Thank you Patti for sharing your Paul with us and your heartbreaking story. Congratulations on your Ebook, it will be a blessing to many people.
    XO

  4. It’s all happening hey:-) Congrats on getting the article published, and look forward to eharing when the book is ready! Another moving post, Patti, bless you for sharing. H xxx

  5. Looking to Monday with heightened enthusiasm

  6. I had to wait to read them until you had them all finished… Is that cheating? I am in awe of you. Reading these postcards brings back so much of the fear I remember having in the pit of my stomach. How can you make me laugh and cry all while reading the same sentence? I have so many mixed emotions, thinking about the day my children are old enough for me to read this to them. They will be so proud of their granny. It is bittersweet to think that they will get to know their beloved papa through their memories and the words of my strong momma. I love you so much!
    Your Sara

  7. I’m excited about the ebook (says impatient paying customer :). But will there be a print version? I have a number of people that I want to share your memoir with, but most of them don’t have ebook readers. I know nothing about making an ebook into a print copy but hopefully someone can provide advice/guidance (SK? Charles? Victoria Grefer?) I don’t want to pressure you, but this memoir is so important, I want to share it with as many people as possible 🙂
    Big hug. Love you.

  8. It’s so hard to comment here because I am torn between writing about your writing which held me the whole way or about the ordeal you and Paul underwent. Heartbreaking.
    P.S. I haven’t found anyone to photograph my space yet, but maybe my daughter if I can catch her between work and sleep.

    • I hadn’t though about it like that, but I do notice the comments usually fall into one category or the other. I, of course, appreciate both.
      You have one more day :>) If not, I’m going to put them up every Monday, so you have time…
      Thanks for being here.

      • That would be great, Patti. I can have her do it Monday afternoon, I think. She’s working so late every day and I hate to bug her about a photo when she’s so tired, you know? But she has Monday off.

  9. What a great picture! I know this has been trying for you, but you have the ability to touch so many lives 🙂

  10. A new August 🙂 How are you coping? So much good news connected with so many different sorts of memories. I’m very excited for you and will stay close these next few weeks – mainly to bother you 😛 **hugs**
    Ellespeth

    • Bother away, Ellespeth:>) Just got back from my writing group and it was productive for all. I am chosen to run next month’s meeting, as our fearless leader will be out of town. We are planning a mini conference, etc.
      Keeping busy is the best medicine.
      Hugsback!

  11. Reblogged this on BalconyViewz and commented:
    Sometimes our own grief can inspire others. Stop by Patti’s blog and read the words and see the pictures of a truly beautifully strong woman. Ellespeth

  12. Sharing is the most important thing we can do…
    You are keeping more than just a memory alive for us all..

    Shaun x

  13. Patti, this has been a great series, and I am so glad it will be an eBook. I love the picture of you and Paul in 2006. And I love the phrase, “actively patient.”

  14. Pingback: New Features and Reflections of Memoir and August | THE WRITE PLACE

  15. Pingback: EDDD 14; Family Health History, The Perfect Gift (Says Mom) | THE WRITE PLACE...

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