It’s been a long, hot summer with family around most of the time. But no cancer treatment, a good thing so I could fully enjoy them.
Big girl pants, the time has come. It’s September 11.
I’m scheduled to have my port implanted in two days, at 8:00 in the morning. So, another hotel stay to avoid having to wake at 5:00 am so that we’ll be on time. We’ve had to do this several times on this journey and we’ve turned them into mini-vacays and dinners out together. There will surely be more. Lemons to lemonade, a lifelong skill!
I have been nervous about the port placement. But once again the nurses there added some conscious sedation to my IV so that it would be bearable. And it was, just pretty sore afterwards when the lidocaine wore off. I’ll get to see if my new mattrass will keep me on my back.
It feels weird having a foreign object in my shoulder, and I don’t particularly like it. But it’s really the most efficient way to receive my transfusions. A few people who have used their veins have seen them turn black from the poisonous liquid. Chemotherapy saves many, many lives, but it also has a well-known dark side.
After a long, dry period, things are moving quickly because the clinical trial is about to reopen. And they are nothing if not thorough at Fred Hutch. My port is in pace now. Next week I’ll have another PET scan. Then I’ll have my third bone marrow aspiration right after that. And the last procedure that I know of is a heart exam called a MUGA scan, which is a trip through a machine with some liquids in my vein to check the status of my heart. This last test is to see if my heart is strong enough to tolerate the chemotherapy.
After months of delay and frustration, it looks like I’m about to start climbing that mountain. I’m feeling energized and optimistic. To fight the feeling that my life is out of control, I try to stay as well-organized as possible. I bought a “chemo cap” from Amazon which, when kept very cold, you put on just before the infusions begin. The rationale is that the cold will insulate my hair cells from the harmful chemotherapy, preventing my hair from falling out or at least helping it grow back quickly. I’m not optimistic about its efficacy, but I’m willing to try anything to feel “normal” during the process. And I have a pile of scarves and bandanas o cover my head if necessary.
My friends have donated them all to me. Because of all the support I’ve been given from so many, this has not been a lonely journey. Even if I can’t fully prepare for what comes next, I know that I am in the loving arms of friends, family, and God, most of all. I know that, from beginning to end, I will never be alone.
I think we, who are willing to be in this room and undergo personal change, are brave souls.
When I joined Al-Anon, I was in my Fifties, and anxious to save another person I loved. But oh what a joy it’s been to let go of that obsession, which was becoming so shrill and counterproductive.
I was relieved to turn the focus back on myself and learn that my faulty attitudes were the source of my pain, not the people around me.
Regarding the amends steps, it’s possible to overuse them, just as we might exaggerate our negative defects in the 4th step. I’ve done both! That’s why it’s so important to understand the purpose of amends: reaching personal freedom.
These are intended to be hopeful steps, not self-flagellation. Making this list and then acting on it is just another way to weed our garden. My husband’s always reminding me to weed close to what we’re growing, so that nothing interferes with the growth of the plant.
Making amends is not always pretty, and rather than freedom I sometimes look for forgiveness and closure. With my daughter, Annie, she threw them right back in my face. So I knew I was on the wrong track to expect absolution from her, and my sponsor helped me appreciate my efforts and then let them go.
My real reward has been surviving that loss without the need to punish myself for it. Truth is, I’m really not that important! Things happen in life, and it’s not always my fault.
I will ry to keep things in perspective in terms of importance. Keep a clear head and don’t get sidetracked by emotional drama.
For example, if closing the door to the microwave wakes someone up, how important is it? The person we woke up should ask him/herself, “Is it worth having a fight over?” The people most vulnerable to this slogan sometimes just thrive on the drama. Don’t buy into it.
Move on, distract, find a healthier and larger perspective. We can get so bogged down in pettiness that we stop seeing the larger picture. Today I will try to remember what’s most important in my life—getting along with my partner—and do what I must to protect that.
Ironic, isn’t it, that you have become my teacher and not the other way around—teacher of life, teacher of love, and beacon of surrender.
I’m so grateful that you were born, even though at times I’ve felt otherwise. God works in mysterious ways, doesn’t he? Though you haven’t been in my life long, and not always happily, it’s been your very existence that has propelled me into a serenely spiritual life, even happiness. I never would have done the work necessary to reach this place without your inspiration.
You are my child, my teacher. As I’ve stumbled on this rocky path, my thoughts of you have guided me; they guide me still.
All that I’ve become are gifts from you, my daughter: life lessons, trial by fire. How do I honor you?
Let Go and Let God (p. 28, 95, 107, 125131,n163, 220, 294, 361) “Every day there are decisions to be made and problems to be solved. When we notice irritations growing into tensions, tensions into near-panic, and old fears returning, it is time to stop and turn to God. We find that when we supply the willingness, He supplies to power.”
Remember, “our best thinking got us into the rooms.” In other words, our minds can be dangerous places to go without some help. In Al-Anon we turn to a Higher Power. It can be God, a tree, or the group itself. As long as it’s not just us. Our egos and willfulness can blind us so much to taking a healthy course of action. And we’re just trying to help our children, so it’s easy to rationalize and justify our actions. That’s where educating myself about the disease gripping my daughter has been so critical for me. Over time I finally accepted that I didn’t have the power to save her from her disease. That was a hard pill to swallow, but a necessary one. I learned to let go and concentrate on what I could control. That’s when I started to feel free and serene and able to move forward with my life. I wish the same for all my brothers and sisters in these rooms. God Bless!
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.
“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.
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’!
“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.”
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.
