Recovery of the Spirit
What is your favorite slogan? Page quotes are from One Day At A Time:
Easy Does It (p. 19, 111, 189, 238, 301) “When we come into Al-Anon, burdened with problems and confusion, we are confronted with a bright light of hope. This may tempt us to try too hard to learn, too quickly, all there is to learn about the program.”
So, take in what you can when you can, at your own pace. Many people leave before the miracle happens because they felt overwhelmed. I’m so very glad I didn’t and stuck around.
Looking for Solid Ground
From Hope for Today, November 12:
“Serenity? What’s that? For years I was like a weather vane that spun around according to the air currents that other people generated…I attributed these mood swings to nervousness, lack of assurance, and whoever else occupied the room at the time. Serenity always seemed beyond my control…where does this serenity come from? It comes from trusting that everything in my life is exactly as it should be…it comes when I choose to care for myself rather than to fix someone else…
Thought for the day: I am powerless over many things, but my serenity is not one of them.”
Trust—a kind of steadiness— leads to surrender which leads to freedom.
Serenity.
From Lemons to Lemonade
This is a recipe for lemonade. But first you’ll need a few lemons. You can’t make this delicious fruit drink without the sour bitterness from the lemon tree. How you get from one to the other is not so complicated. Not if you want to live well.
Gene and I took a camping trip to Orcas Island recently. Probably just to prove to ourselves that we could still do it. Over the past thirty years, we have camped in some of the most horrible conditions imaginable: from near hurricane-force winds in the middle of the night that blew our tent off over our heads; to swarming black flies that sucked the living daylights out of me. But we were much younger then…
The first lemon on this trip was that I absentmindedly booked the 5:55 am ferry out of Anacortes. I must have been asleep when I did that. Wild horses couldn’t have gotten us to a ferry at that hour. So we showed up at 12:35 when I thought we’d be leaving.
“Sorry, but can’t you see the 5:55 am time on this receipt? Go wait in the standby line.”
“Thanks, pal.”
Lemonade? We made it onto the ferry.
The next lemon on our Orcas trip was where we camped. Now, I knew better than to wait to the last minute to make a reservation. So in December of 2023 I secured a spot in Moran State Park on the island. The last one available! I felt so lucky. But I should have known better. Sometimes I think with cotton in my brain. Why was it the very last one available? Because no one else wanted it, dummy. I knew it wasn’t close to the water, yet I didn’t realize how far away it would be to schlep our canoe and kayak into the lake. But site #83 must have easily been the worst site in the whole park. Sandwiched in between many other sites and the restroom, there was naturally a steady stream of people and screaming babies on their way to the bathroom right through our site. So, no privacy. No view. No water.
Lemonade from this lemon? We didn’t have to walk far to pee; and there was trash and a water spout right next to us.
Speaking of our boats, of all the beautiful places in Washington State to camp, we chose this state park because of all the lakes. I had recently bought a kayak and wanted to try it out in calm waters. Well, life happens, doesn’t it? My bilateral carpal tunnel syndrome acted up so violently last May that I had to have both hands surgically repaired. One in June and the second one in July, a week before our trip. Needless to say, I had no working hands to paddle either Gene’s canoe or my kayak. Terrible timing.
Lemonade? If we had taken the boats, it would have been much more physical labor that we were definitely not up to right then. And I chose to let my hands heal over proving myself in my kayak. A healthy choice.
Back to the campsite. Our tent that Gene hastily stuffed into its sack had several broken poles, so we couldn’t put it together. The backup tent was another conundrum for us. But Gene jerry-rigged its raising with a couple of walking sticks. It’s the same tent we used in Yosemite in 2006. And small. We didn’t mind practically sleeping on top of one another back then. But we do now.
Lemonade? Gene gallantly offered,
“I think I’d rather sleep out in the open air anyway, under the stars. Haven’t done this since Ely in 1999.”
God Bless Him!
Honestly, how long has it been since we last car camped? Maybe six years? We were so out of practice that we forgot how to pack the food in the cooler. Safely. I dutifully made lots of sandwiches beforehand so we’d had plenty of ready food to eat. Wrapped each one in plastic to protect them. Oh no! At every gas station we went to, Gene got a bag of ice and all those ice cubes cascaded down into the bottom of the cooler where I had packed our sandwiches. A day into the trip I went to get some of those sandwiches for lunch. A wet and soggy mess. I ate my peanut butter one anyway because I hate to waste food. Or maybe to self-punish. But Gene couldn’t stomach ham and cheese on soaking wet bread.
Lemonade? I relearned how to pack an ice chest. And we had plenty of good backup food to eat. Plus, Eastsound was close with great restaurants. We ate well the whole time.
I frequently get night sweats with my cancer. Annoying in my bed at home, they were a real pain in my sleeping bag. I awoke in the night to a soaking bag up around my head and neck. But, as always, I went back to sleep. Then during the night it had dried out but left a hard, crusty film on the lining of my bag. I asked Gene about it, and he said,
“It’s probably dried sodium that left your body.”
Lemonade: so that’s why I have low sodium counts in my bloodwork even though I eat enough salt every day to fill a salt shaker! Mystery solved.
For comfort, we brought two camp chairs. Gene’s broke as soon as he sat in it. My fault for leaving it outside all winter. I threw it in the trash.
Lemonade? I sat in the remaining one. Gene sat in the car, happily dozing much of the time.
Lemon: I have a case of my second memoir, Stepping Stones, that I’ve run out of places to unload. Women’s prisons are next on my list. Lemonade: I brought a few to Darvill’s in Eastsound to donate. He accepted them and will consider stocking my title. Just pass ‘em around. There’s good spiritual healing to be found in the pages.
And so I come to the end of my recipe(s) for lemonade. And it’s fitting that I end on a spiritual note. Because to reach a happy conclusion when life throws lemons at us requires some semblance of positive rationale-building. For every one of those lemons I could have whined and thrown myself into fits of hand-wringing and anxiety. I’m quite capable of doing that. But to what end? An attitude and camping experience far more bitter than most lemons taste. So…my choice these days—Gene has always had an even temperament, except when he doesn’t—is to put a positive spin on whatever was happening. A worthy challenge.
Why? Because turning lemons into delicious, sweet lemonade beats walking around with my lips pursed from sucking on sour lemons. And we did prove to ourselves that we could still go camping, as ill and infirm as we are now. Gene is still nursing a broken foot. And I’m bone-tired from lymphoma. But we did it and survived, proud that we still could.
We only get one spin around the race track. Might as well try to make it a happy one. Beats bitchin’!
Wisdom From Charles Swindoll
“The longer I live, the more I realize the impact of attitude on life. Attitude, to me, is more important than facts. It is more important than the past, than money, than circumstances, than failures, than success, than what other people think or say or do. It is more important than appearance, giftedness or skill. It will make or break a company…a church…a home. The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our past…we cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude…I am convinced that life is 10% what happens to me and 90% how I react to it. And so it is with you…we are in charge of our attitudes.”
Circling the Wagon
A message from my care team at Fred Hutch:
“Hi Marilea,
Dr Poh asked me to reach out to let you know that unfortunately, the trial she discussed with you during your visit was just paused for a safety evaluation.
The FDA is requiring that all patients 60 years or older who are currently enrolled in the trial finish 6 cycles to ensure its safety and tolerability. We anticipate that the trial will resume enrollment in about 6 weeks. At that time we can have you sign the consent and start our screening process. Dr. Poh reassured me that you are clinically stable and she advised waiting until then to participate in the trial.
I do apologize. I know you’ve been patiently waiting and we will get things moving as soon as possible. Please let us know how you would like to proceed.
Thanks so much,
Jess, RN”
“safety evaluation,” “to ensure its safety and tolerability,” “all patients 60 years and older.” As I approach the starting point of this journey, the reality of what I’m facing is hitting me. Up until my diagnosis, everything seemed speculative. My attitude about getting cancer—and the possibility of living or dying from it—was largely intellectual. Now with the start of 18 weeks of pouring poison into my body looming in just a few weeks, it’s all becoming real. How do I feel? Not fearful but yes, somewhat apprehensive. As Jane Fonda said in an interview, “It’ll be an adventure!”
There are so many people in the world who have faced the same journey. I am not alone. Many men and women where I live have gone through traditional chemotherapy and clinical trials and they are all thriving. If I’m apprehensive about anything, it’s the everyday discomforts that I’m not used to. My excellent health prior to getting cancer spoiled me a great deal, and when I get so much as a head cold I tell my friends,
“I don’t do sick well.”
Well, Marilea, it’s time to put on your big girl pants. I want to get out in front of this as much as possible Now at a new normal, I need to make adjustments.. I’ve ordered a special sleeping mattrass with sides to keep me on my back while I sleep. This is necessary to keep from irritating the soon-to-be implanted port in my shoulder. My friends have already started a bandana collection for me. I would love to keep my hair, but it’s not likely.
Friends. Family. My best friend from Virginia is planning a trip here in the spring. My daughter, Caroline, is coming for a visit in October. My son and his family are spending several weeks with us on the island this summer and we’re growing closer. All my friends have showed an abundance of caring with endless offers of meals and rides to Fred Hutch if Gene can’t take me on infusion days.
I am surrounded by love and good wishes.
What a blessing!
My Doctor Levels With Me, and a Period of Reflection
July 8th, I had my blood drawn at Fred Hutch and met with my care team shortly thereafter. This was the big moment I had been waiting for, the one where I found out staging and next steps. The one when I’m handed my prognosis. Scared? No. Delighted to be finding out where to go from here, my likelihood of full recovery or whether or not I need to budget my time.
July 9th: I had my second carpal tunnel surgery today and will wait two or three weeks for it to heal. In the meantime, I can reflect on what my oncologist had to tell me.
I have Stage 3 follicular t-cell lymphoma. This is a subset of a subset of lymphomas. There are so many of them, and they are treatable—but not all of them are curable. Mine is a rare one and of the non-curable variety. But the research has found a few new protocols that can keep it in remission for a long time, sometimes several years.
My oncologist, Dr. Christina Poh, spelled out our first line of attack, a commonly used drug mixture known as CHOP. I will go down to Fred Hutch once a week every three weeks, six times. So…eighteen weeks of chemo. I’m a pretty tough old bird, and I’m confident that I’ll tolerate it. If Jane Fonda can, so can I! J Yup, she’s had it, and is confident to stay in a full remission.
My doctor wants me to participate in a clinical trial concurrently with the chemo. There is evidence that patients who add this extra drug to their CHOP protocol have a better chance of staying in remission. Once my hand surgery is healed, I’ll go back to the Hutch to sign these clinical trial forms and get scheduled for treatment. I’ll need to have a minor surgical procedure where they insert a port into my shoulder. It’s a permanent line into a major vein and will stay in place throughout my treatment. It’s convenient for infusions and blood draws because I won’t need to be injected every visit.
Dr, Poh looked right at me and said,
“You’ll either die from it or with it.”
In other words, the chemo either can’t be tolerated by me or it won’t put me into remission. In that scenario my life will slip away pretty quickly. But if I die with it, it will be subdued sufficiently to keep me functioning well and not bad enough to kill me. In my 80’s, I’ll die of something—maybe unrelated to cancer—and pass on from that.
But enough talk about death. I’ve been given a rare and wonderful opportunity to spend the rest of my life just as I want. My bucket list will be indulged, I will smell the roses with more appreciation than ever before. And just as I endeavor to live well through the gifts of my recovery, now I’ll have an opportunity to die well.
Down to the Hutch Again
I have to say that Fred Hutchinson Cancer Center is like a luxury hotel. The whole 7th floor is dedicated to just lymphoma patients. There seem to be quite a few of us spread across the globe, compared to other kinds of cancer. I have a lot of company.
Gene and I arrived at noon and the nurse got me settled in to the room I’d be waiting in. She injected the radioactive dye into a vein, and allowed me to take the two prescribed Ativan while I waited the necessary hour. The tranquilizer, remember, is to calm me down and/or sleep during the whole procedure. My claustrophobia is probably why I love open spaces so much and being outdoors. I very much appreciate how the medical community frequently panders to this need of many patients.
After the scan they sent us home to wait for the result. It would paint a clear picture of how much or little the cancer has spread. And then my care team would plan the next steps. Many of my friends and family have asked me, quite indignantly, why it took nearly ten months to diagnose my cancer—especially since I’ve had glaring symptoms since September of last year. The reason is that the lymphoma cells did not show up in any of my earlier tests—not in two bone marrow biopsies nor in my first lymph node biopsy. My last biopsy did reveal a “partial and evolving” occurrence of t-cell lymphoma. Those two words give me hope that they may have detected it at an early stage.. My doctor told me it was “non-aggressive and slow-moving.” Does that improve my prognosis?
Maybe, for now. There are other factors that give me hope. The “nearly perfect health” I’ve enjoyed most of my life might help me. And it might reduce the possibility of complications. A dear friend died of lymphoma last year, largely because his heart was compromised and he needed three stents implanted and several ablations in the midst of fighting cancer. I had an echocardiogram last winter and was told “You have the heart of a 30-year-old.” Well, that’s nice to hear, but my lungs are a mess with early-onset emphysema and several benign nodes taking up residence. In any case, not to state the obvious, the younger and healthier you are when cancer strikes, the better your odds of long-term survival.
My odds are not good: 4 in 10 patients will live to the five-year mark. I told my son that and he said,
“Mom, I want more than five years!”
But I’ll be 81 in five years. That’s a good, long life, I think, not to mention the fullness and richness of the life experiences I’ve been privileged to enjoy. If I’m given five more years, what an opportunity to grow in my spirituality and make the most of the time left to me! How many people get that chance?
Of course, I could get hit by a bus tomorrow…
It Never Rains; It Pours
This spring, while I was waiting for some definite news, my carpal tunnel syndrome came back. It had started in October of last year and it was awful, but brief. Searing, burning pain, numbness and worse, sleepless nights. I used to walk around the house like a phantom, watch a movie, anything to distract me. Day became night and night became day. I was exhausted, just running on fumes. Then it went away—like a bad dream.
But in April it came back with a vengeance. I ran back to my spine doctor and he sent me to his partner to do a nerve study. He concluded that, yes, I have bi-lateral carpal tunnel syndrome, probably acquired from the past decade of being chained to my computer. I could either have steroid shots right into the area (ouch!) every three months or I could have it permanently fixed with surgery. With cancer treatments looming, I didn’t want to have to deal with that too. So I had my right hand repaired a couple of weeks ago, and what a relief! Now just my left hand bothering me, but that surgery was scheduled for July 9th and then peace!
But wait! That’s not all! I’ve been in the Urgent Care Center three times since April with mouth ulcers/viruses/infections. Oh, I’ve had canker sores many times in my life, usually caused by me when I bit down on my lip. But the worst of these hellish infections was like something I’ve never endured. Intense soreness, inflammation and ulcers filling the bottom half of my mouth. I couldn’t even talk normally. But the worst part was my inability to eat without terrible pain. I was so hungry and unable to pass anything across my palette without terrible pain.
But there’s a wonderful medicine called Magic Rinse, and it was just pure lidocaine I had to mix with two other liquids and swoosh around in my mouth. But I couldn’t swoosh, so I used an old makeup brush and painted it on directly. Ah, relief! My kids took us to the opera for the last performance of Barber of Seville, and I couldn’t say no, though I wanted to. I brought my “magic” with me and kept painting it on throughout the performance. Then we picked up the grandkids and went to a Thai restaurant for dinner. Oh, I love my kids to the moon, but that was not the best choice!
That’s enough whining from me. It’s been a nasty spring, health-wise. But I’m only human. It feels good to vent once in a while. Sort of like interior weeding. And then let it go and move on to more positive thoughts. I have a third PET scan scheduled for June 26th. They will see if my “hot spots” have increased since my March scan. If they have, then we’ll probably get started on the chemo. If it looks the same, then there’s no hurry.
So we’ll see what the PET scan reveals…
The Peace That Comes From Knowing
I removed the question mark in the title. It’s not an uncertainty any longer. And it’s not so bad. I’d rather know the name of my enemy so I have a chance to fight it.
For all of my life I’ve enjoyed nearly perfect health. Oh, an annual cold maybe and a couple of bouts of bronchitis. But this 76-year-old body has never known serious illness, and there are so many diseases out there. They make warriors out of the most ordinary human beings. Fred Hutch Cancer Center in Seattle, the place that finally isolated and found my cancer, is a mecca for these warriors. Now I will be joining them.
I am at a place in my life that seemed out of reach for me. I never dreamed that I would ever learn to be truly happy, growing, as happiness must, from the inside out. This is where I am now, having spent the past decade working on my demons—we all have them—and replacing them with good, orderly direction (GOD). I write a weekly blog about my spiritual recovery, and my cancer diary, though humorous at times, is heavily weighted to reflect that.
There are over sixty different kinds of lymphoma. The ones that are the most common often have the highest success rate because they have found more ways to treat them. Then there are the uncommon forms of lymphoma that they don’t know much about because they appear so infrequently. The fates have given me the latter variety, T-cell lymphoma, which is rare. There are a few protocols that they use to coax it into remission, but the cancer tends to recur and the long-term success rate is low. About 30% make it to five years. And then there are clinical trials…
This is a new challenge for me. Gene and I spent over twenty years crisscrossing the continental United States, hiking in most of the national parks. We weren’t mountain climbers, even when we were much younger, but we did scale what was left of Mount St. Helens in 2002. It was his second climb, but my first. And oh, what an achievement it was for me, scrambling over those boulders, sinking into fine volcanic ash to finally reach the top. I was so exhausted at the time that I announced,
“Never again! No more mountains to climb!”
Well, life has now presented me with another one. When I meet Saint Peter at the gate, whether it’s next year or ten years from now, I will have the satisfaction of knowing that I didn’t fritter away my life avoiding difficulties and the interior growth that comes from facing them. The truth is, of course, that I would be passing on this particular challenge if I could. I’m not a saint. But once again, I’ve been faced with a problem that I didn’t have a choice about. So my work now, Saint Peter, is to rise to the challenge. I’m not ready for you yet.
“Regardless of cause, history, or contributing factors, feeling guilty about your past role in the development of a teenager’s problem behavior will risk sabotaging your parenting goals. For a more focused relationship with your teenager,
Feeling better about tough choices was always my Waterloo. But now I say over and over again that I did the best I could with what I knew. Now that I know better, I can do better. Repeat this mantra over and over again until you believe it.