Friday, August 28, 2015
"My name is Alexis Johnson and I am a doctoral student in the Department of Communication Studies at the University of Nebraska-Lincoln. My research centers on health communication processes, and I am conducting research that I hope will improve our understanding of supportive communication between social networks and family caregivers of patients with cancer. As someone who has provided care to a patient with cancer, I am interested in conducting research that is aimed at better understanding the memorable, supportive messages that are shared with family caregivers in cancer.
"To participate: Participants in the states of Nebraska and Alabama must be at least 19 years old or older to participate, participants in the state of Mississippi must be at least 21 years old to participate, and participants in all other states must be at least 18 years old to participate. If you meet these requirements, and are a current family caregiver of a patient with cancer, and have 20-30 minutes to complete an online survey, you are eligible to participate in this important research."
You can learn more about this survey by going to the site and clicking on the link on that page. You can also find Alexis' credentials and contact information at that site.
Monday, August 3, 2015
|Hugh and I met in 1997, but we didn't marry until September 2010.|
We even had insurance. So, while I was at Dad's house, Hugh scheduled a colonoscopy for himself. He couldn't get an appointment until the end of June, and the doctor called to cancel that appointment and to reschedule for July 6th. Hugh and I never discussed the colonoscopy, other than the fact that I planned to have one later in the year.
The day of the colonoscopy, Hugh said, "I'm afraid they're going to find something." When I looked at him, he told me that he had been bleeding for the past few weeks. My heart sunk, but I had enough experience with mom to know that I didn't need to get morose about this news. Instead, I told him that we could handle anything they found.
What they found was a tumor about the size of New York. When I saw the images that July 6th morning, I felt as though I had been hit up side the head with a 2x4. Fortunately, I was sitting, as all the emotions I had when I first learned about Mom's cancer returned, only twice as large.
The surgeon, one who had taken out my gall bladder four years ago, was optimistic, but wanted to run a few more tests to learn whether or not Hugh was a surgical candidate. They went on to schedule his surgery for Friday morning, July 17th, and his CT scan later that week showed that the tumor seemed contained and only one spot on his liver.
The waiting for tests and for his resection surgery seemed unbearable. He was worried about what they'd find once they opened him up. He was worried about losing his bus driving job and the insurance. He worried immensely about his booth at the farmers' market, and I had shut my arts & crafts booth down so I could run his cheese booth. I kept reassuring him that, whatever we learned, we could make it through this ordeal together.
Other than the farmers' market that weekend, Hugh and I shut ourselves down and spent our days together quietly in the house watching reruns of House of Cards. He wanted to watch the third season, but he wanted to get me up to speed so we could watch that season together. As things turned out, we only made it into the second episode of the new season.
Hugh was wheeled into surgery at 10:30 AM Friday morning. I kissed him and told him I loved him. I left the hospital, because I felt so nervous. I went to the coffee shop where he usually went every morning, and the owner came to me and reassured me that all would be well. I conducted a few more minutes of busy work, then returned to the hospital. Within an hour, a nurse asked me to go to the conference room, as the surgery was over, and the surgeon wanted to speak with me.
When the surgeon arrived at 12:30, he was all smiles. The surgery went "very well," and the lymph glands and liver actually seemed better than they looked in the CT scan. The lymphs were off to the lab for biopsy, and Hugh was in recovery. I could wait in his room for his arrival. The doc even assured me that Hugh could continue to drive a bus in August, provided he didn't lift anything.
I was beyond elated. This news was better than I expected, and I couldn't wait to see my husband to let him know all would be well. So I waited. Then, I fell asleep.
About 2:30 PM, the surgeon walked into the room and wanted to know where my husband was. I didn't know...and I was confused coming out of a deep sleep. He raced out of the room, and the head nurse entered the room to ask about my husband. I told her I didn't know, and she asked me to stay where I was.
Over the next hour, I learned that Hugh wasn't recovering well and that they intended to put him into ICU. I called my brother, and as I was standing in the hall talking, someone yelled, "Mrs. Blair, here's your husband." I looked, and Hugh turned his head to look at me. He was greenish-blue, and his eyes looked so sad. I knew then that nothing was going to go right from this point on.
I watched them wheel him into a room at the end of the ICU hall, and within five minutes I heard the announcement for "Code Blue," and watched as at least ten doctors and nurses ran to his room. At that moment, I felt the floor fall away from me, but I felt Hugh pressing me against the wall, holding me up. He said, "I'm sorry. I'm so sorry." Then I felt the arms of a nurse holding me, and I shrugged her off. She had made Hugh disappear.
Hugh's body was riddled with cancer cells that had compromised his liver. He went into DIC (disseminated intravascular coagulation), he developed a shock liver, and his kidneys malfunctioned. He also, from what I gathered, suffered a seizure and a heart attack. Still, the internist and his surgeon assured me there was hope. They found an artery that had burst after the surgery, so he went back into the surgical theater for another two-and-one-half hours.
During that time, a few friends showed up to wait with me. We had no word, so I felt at least Hugh was still alive. Despite all the alarming news, the internist and nurses kept reassuring me that there was hope. I should have known better after Mom's experience. When so much bad news is on the plate, there's not much room for hope. I later learned that 1% of all resection patients develop DIC and that none of those 1% survive.
Finally, I was able to go see him, but he wasn't really there. There was nothing in his eyes. I think Hugh died when he coded, and that I was just looking at a shell. I asked if I could return home to get a toothbrush and change of clothes, with the promise that I would return quickly. On my drive back to the hospital, I prayed that Hugh would live. As soon as that prayer exited my mouth, my mother was in my head saying, "Be careful what you pray for." I immediately added, "Let him live and be fully functional, if it's your will."
For the next four hours, I watched as they pumped 20 bags of plasma and 20 bags of blood into my husband. I watched as he maintained a 150 heart rate and a blood pressure of 46 over 36. Finally, I asked the doctor on duty what they planned to do. "We'll have a conference in the morning." I just shook my head and said no. We were going to end things now.
I knew I had made the right decision, because the doctor and nurses didn't argue with me. They quietly removed the IVs and asked me if they could shut down the respirator. Hugh was so drugged that he was unable to breathe on his own. I assented and asked them to give him the legal dose of morphine. Then, I just placed my right hand on his heart and held his left hand with my left hand and watched as his heart rate dropped.
All afternoon I had been saying "I'm sorry" to Hugh. I was merely echoing what he had said to me when he held me as he coded. Finally, I realized what I needed to say. I kissed him and said, "Cora and I will be just fine. You can let go now." And, he did. He flatlined at 2:38 AM on Saturday, July 18th, and the unexpected and unrelenting rain that had been pouring all evening stopped.
Tuesday, April 28, 2015
|One of two terrapins traveling on its annual pilgrimage through my parents' yard.|
In my searches for what has happened in my life over the past two years, I've suffered pangs of hurt, sadness, and even utter and bitter loss over and over again. That pain has worsened with the new Facebook "look what happened on this day last year...or two years ago...or even a decade ago..." feature. Although I'm sure this daily reminder of the past is meant well, it can shake my socks off sometimes.
This morning, for instance, I was whacked in the face with the image of the terrapin shown here. Yes, it's just a turtle. But, it's one of two turtles that make an annual pilgrimage through my parents' yard. These two turtles...or their relatives...have been traipsing through my folks' yard since they moved here in 2000. The turtles just don't pass through. They stick around for a few days, playing hide-and-seek with each other and with us in the gardens before they move on.
While at some other point in my life I might have thought warmly about this photo and its family tradition, I happened to glance at the photos that braced that turtle image in my Facebook "mobile uploads" album. Those photos portrayed our first visit to the teaching hospital where mom was first diagnosed with cholangiocarcinoma. We had just returned from that city to discover the turtles in the yard, exactly two years ago today.
I'm glad I have this chronicle of events that happened over the past two years, because those clues are vital for writing the memoir. But, I'm not very keen on how I keep getting pinched by the past in the most unexpected ways. Sometimes, I feel as though I'm picking at a scab. What saddens me further is that we haven't seen the terrapins yet this year.
Maybe. Maybe. Maybe I'll get lucky and see them before I have to return home this upcoming weekend. And, maybe one day I'll truly be grateful for the memories.
Saturday, April 25, 2015
Take, for instance, my friend Kim Jacobs, owner of Turquoise Morning Press. One day, out of the blue, I receive an email from Stephen Zimmer. He said that Kim had recommended me to serve on a writers' panel at the second annual Imaginarium Convention. After reading about all the guest speakers at this event, I felt a little intimidated...published authors many times over, owners of publishing houses, etc...how in the world would I fit in?
Then, I began to write my bio for the guest author pages, and I realized how much I had accomplished in my short writing career. That was a good feeling. The results also were a bit ironic...it appears I've focused on financial issues during most of my writing career...and I don't have two pennies to rub together. Ironic and hilarious, actually.
What's that adage about writing about what you know? I guess I sidestepped that advice. At any rate, I'm on board, and I'll be participating in this event in mid-September.
Then, I learned that my friend Phyllis, an 11-year-cancer free breast cancer "warrior," was participating in the Kentucky Derby Festival Marathon today. She was gathering donations for the wonderful Gilda's Place in Louisville. For $20, a person could purchase a ribbon that Phyllis would wear during the event. I jumped all over that one, but when I went to donate, I learned that my credit card information was stolen about five days earlier. The only way to donate was through credit card.
But, Phyllis worked it out, and the result is shown in the photo above. Phyllis attached the ribbons to a ribbon and she wore that contraption as a tutu. In the rain. What a cold and messy day! But, Phyllis finished the marathon, and she thinks her time was 3:49:00. Mom's ribbon is Kelly Green, the color that represents bile duct cancer.
What a gift. What a memory. What a wonderful thing for my Mother, who loved horses and Derby week. That love came, of course, from the time she spent out West with us and, mostly, with my brother and his partner, Linda, at Menoken Farms.
Thank you, Kim. Thank you, Phyllis. Thank you both and everyone else for your parts in keeping my feet on the ground and moving.
Friday, April 17, 2015
|From Cure Magazine's article|
Yep, I'm back in the caregiving saddle again.
Mara's post also hit home, because it was just a year ago that I took off with her to stay at her house in Floyd, Virginia for Easter weekend. Did I realize it was Easter weekend at the time? No. Something has happened to my thinking over the past three years that disabled my ability to connect with the rest of the world. Except for Christmas, holidays don't seem to exist.
And, it's Poetry Month, and I'm not writing poetry. I haven't written anything in the memoir, either. I haven't written my blogs or anything else other than work for a new client. While I can use that client work for an excuse, I think, frankly, that I just needed a break.
Darrell Laurent, long-time columnist for the Lynchburg newspaper and author of several books, wrote something this morning in his public Facebook Group, The Writers' Bridge. He wrote:
"Losing our motivation is part of the larger creative process. We wouldn't have the bursts of inspiration and productivity without the difficult creative dips.
"When we lose our creative steam, not only does our writing come to a crawl, but we also start feeling low about ourselves.
"For example, when you aren't writing, the feeling that you should be working nags at the back of your mind. This tension creates further stagnation and deepens the creative funk."Some tips he provided included 1) Honoring the rest period; 2) recommit; and 3) talk about your work...among others. Those three points stuck with me.
Since I don't believe in coincidence, I honor the fact that Mara posted that poem and that Darrell posted that article. They both motivated me to blow through this fog and get something down in writing.
And, now that I've started, it seems the flood gates are opening in my head. There's just so much...so much.
Two major events happened recently regarding the book. Denise Brown at Caregiving and I had another little blog chat, this time about marriage (and the marriage, btw, is doing much better). That 1/2 hour discussion is available at Blog Talk Radio.
The other issue is the article in Cure Magazine about caregiving. I'm not sure why they have me in that article, because it opens with me, but doesn't go anywhere with me. The initial article was much more involved. But, they had a photographer come out to my town to take a photo, so I guess they felt compelled to use it. As a result, I have a speaking engagement in Louisville in August. This is a good thing.
Last, but not least, I'm been somewhat gainfully employed by Merchant Negotiators since January. I have conducted a lot of writing and research for that company over the past few months leading up to that site's "going live" this past week. Once again, I'm writing about financial issues. If I ever win the lottery, I know a lot about how to manage those winnings!
As for dad -- he's doing fine. He's actually doing great. I just needed to validate that information for myself. More about him later at my blog on Caregiving.com.
Sunday, January 4, 2015
|Dad's Gifts, Christmas 2014|
Despite my down time, I accomplished a slew of tasks. I couldn't visit Dad over the holidays because of my illness (hubby was sick, too) and because we were strained financially by the loss of my last client. Still, my daughter and I managed to get out and purchase a few things for Dad and send them to him. He especially loved the kitchen scissors and the denture cleanser (something he can't find that easily where he lives). More about this effort at my Caregiving.com blog, I Won't Be Home for Christmas.
Also enjoyed the Caregiving.com Blog Party. I met a lot of new caregivers who blog about their experiences (many listed already in my "links" section), and I had quite a few visitors. Was happy to hear that "Jennifer" won the invisibility cloak that I offered as a prize. That cloak arrived from London the day before the winner was announced, and I'm sending it back out to Jennifer tomorrow. Hope she enjoys!
Making progress on the memoir, too. I'm looking forward to one more writer's retreat in January to finalize the poetry for the book. Then, by mid-February, I should be able to hand the book over to my editor. After a few beta reads, I'll self-publish the book and it should be available by May at the latest. To celebrate, I've created a website for the book and for future publications, too. Easy enough to remember -- lindagoin.com!
January 3 was a huge day for me, thanks to Denise at Caregiving.com (I happen to love that site, can you tell?). She provided an opportunity for me to plug my memoir and talk about caregiving during a live interview. That interview now is available online at Caregiving's Blog Talk Radio. Give yourself about 40 minutes to listen to us jabber away.
That's about it for now. I am feeling much better, and if you were sick (or if you're currently ill), I wish for your health to improve soon. Let's all focus on a great 2015 so we can stave off the monsters. Cheers~!