First, thanks for your generous responses to my new focus on dying on my blog. I wish I could write everyday. But as every adventure should be, this one is full of surprises. What may have seemed like fun one day is a total dud the next.
I hope to address a topic tonight that I’ve been asked about.
What is your pain like? How does it feel? Imagine you have a sopping wet bath towel twisted around your waist reaching up from your naval to your rib cage. It’s twisted so tightly that it’s hard to catch a breath. When you do take a breath, the loose hairpins, askew within the towel, begin to fight for first place recognition as the culprits that want to win this competition. A competition you have not joined voluntarily.
Plus the salad plate that has glued itself to the right center of your back sees an opening to enter this body-slicing adventure, so it pushes forward with the force of a runaway train engine that aims to push forward through your lungs with the hope of escaping out the front of your rib cage.
Making it hard to breathe for the first time in your life. My shortness of breath started three days ago. I think.
That’s one of the reasons I call this adventure of pancreatic cancer an adventure. I never know who or what is going to take over being the boss of me today.
My daughter and I had a good thing going with her handling most of the scheduling for stuff that had to be done yesterday, when I had another–maybe only my fourth or fifth–very unpleasant pain episode. I gave her strict instructions. No more visitors. All mean well. But I am not well. I am dying. I am in pain. I have no reserve energy.
We’d done well with the crock pot of new boiling demands on our lives, but I suddenly pulled the plug. I told her in no uncertain terms, she was not to schedule anyone to see me anymore. I would approve all visitors. And I would probably limit visits to 15 minutes.
That was yesterday. Today she, with my help, or I with her help have scheduled several visitors and appointments, my grandson had passed drivers’ ed, and my granddaughter has survived her first day on her first paying job. Plus we’ve planned a mini road trip for me on Saturday.
Do you catch the volatility and uncertainty of what it’s like to live with uncontrolled pain? One second you’re happy camper and want to invite the world over to share your cake and ice cream. The next minute you’re ready to throw your whole life and cadre of friends into the garbage can.
So, to use a favorite word of mine, today my life is smurphy. So much better than yesterday. Kathleen with her years as a health care administrator and her years of living with such a fun mom, has managed to get some appointments juggled around. I ‘m now into a cue starting Monday that we hope gets me a pain pump by Friday. Goal? To maintain a blood level of the pain med (no more ups and downs of oral meds). And to have the pain meds bypass the stomach. This will help to relieve the nausea that the antinausea med is supposed to help, but instead it’s hiding under the bed.
Write Along with Me 
As you well know, Cancerland is like that- tow steps forward and three back,climbing back up Candy Mountain and sliding down the ladder into the Pit of Pain. It is so good to know your daughter is your able gatekeeper and that you well know how to adapt from momant to moment as your body dictates, Not that pain leaves you much room for choice. I call them choiceless choices. Sending love through the Invisibles.
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Judi, Such words of wisdom on pain! Thank you. Lois
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I am so sorry you have to deal with such pain. I hope your pump will relieve some of the stress anf fear of managing this type of pain. I’ve read your correspondence regularly, and will miss hraring from you. Just BTW, your neice Camilla was my roommate freshman and sophomore years at Calvin. After my husband died 5 years ago, she recommended your blog to me. Kay and I are also facebook friends , so we keep in touch as well. And I truly enjoyed knowing your brother Dewey. Another connection point: I grew up in South Chicago, and will always have a deep affection for that city. 2 of my 5 siblings still live in that area, (NW IN), but I hsven’t been downtown in many years. What adventures you’ve had in your life! I hope God continues his Blessings to you while on this road to meet Him. Sherry Haan
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Thank you, Sherry. I recall some of your connections to me! I’m hoping the pump will be the answer to regulating my pain.
I’m not a “reliable informant” right now! I don’t know one minute to the next how I will feel. I’m not used to having little or no control planning my schedules. It’s a good exercise in humility, though. A reminder about who really is in charge!!
I’ve truly had many blessings and adventures in my life, esp our 50 years in Chicago, including the 11 downtown. Many dreams come true.
Hope to see you here again!
Lois
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Thank you!
Leoma
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Lois, your description of pain experienced has me planning to read the short stories that I see are on your blog. Amazing writing but that is nothing compared to the spirit of truth and faith that you convey in each entry of this journal of an adventure. Along with others, I’m glad that you have Kathleen’s support and assistance on dealing with the pain. May the pump work in curtailing the pain!
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Thanks, Lois! Those stories are old. I haven’t added new ones in a long time. Enjoy anyway!
I’m greatly planning on the pain pump to save my sanity soon. By next week this time, I should have it inserted and running!! As you know, I’m a veteran at handling pain, but this pancreatic CA pain is like none I’ve ever experienced. And I’m not out to prove myself a hero!
Stay in touch!
Lois
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Lois, I am so sorry about your horrible pain. Hope the pump will bring you some relief.
Dorothy in Tennessee
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I so enjoyed our visit today. I pray you will get your pain pump soon.
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I will be praying for a quick delivery of the pain pump. It makes me angry that you have been “put on hold” for something you need so desperately. I will also be praying that you find peace and a sense of control – whatever that looks like with this craziness. My mother died of pancreatic cancer when she was 80 – my current age. Sending hugs when you are ready to take them in. Pat
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Sending love to you, Lois.
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I’m so sorry you’re in so much pain. I hope the pump brings you relief! Mom, Rebecca, and I would have liked to come visit, but we completely understand why you’re not up to having visitors right now. We’re praying for you here in Ohio, and we’re keeping up with your blog (much more regularly than in years past…I tend to read blogs and watch TV shows the same way: spend a whole day watching/reading, then forget it exists for six months, rinse and repeat!) We miss you and love you.
To offer a nostalgic distraction from the not-so-fun parts of this adventure – what was your favorite coffee shop back in Chicago? A friend of mine is moving there next week, and it just occurred to me that I know a fantastic local guide…
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Hi Aunt Lois,We just wanted to say how you are such a wonderful Aunt! We had so much fun visiting you in Arizona a few years ago. We picked some of your lemons from your lemon tree and walked to the pool area and had lunch out there with you at the restaurant. It was so fun to see your place and to talk and laugh with you! We just wanted to reach out and let you know we love you and you are in our prayers! Praying the pain pump helps keep the pain boss at bay. We know you will be in heaven at some point in the future, hanging out with Marv and your siblings. Wish you could write a blog post from there! LoveThad, Sara, Emma and Hannah Roelofs
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