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.
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.
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.
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…
***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.