Walking Through Cancer/Part 5

                                              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!

Walking Through Cancer/Part 4

                                        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.

Walking Through Cancer/Part 3

                                         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…

Walking Through Cancer/Part 2

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…

Walking Through Cancer/Part 1

                                      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.

The Achilles Heel Of Parent Guilt

“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,

  1. Recognize guilt as negative self-talk that is normal, but that can be managed and stopped.
  2. Acknowledge that a desire for relief from guilt places you at risk for changing the rules, boundaries, and standards that you want followed.
  3. Seek professional counseling or other support to help you act more consistently and proactively, feel better about tough choices, and be less encumbered by what happened in the past.”

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.

Some Gifts Of My Recovery

Humor  Being able to laugh out loud—at myself most of all—keeping things in perspective—is so critical, and you can’t do that by living in a bubble. I was stuck in a hole of depression, but recovery has offered me a way out.

I had to force myself out of isolation and start talking more to people. I always came away learning something and even feeling less depressed because I wasn’t alone. I learned not to take myself and my problems so seriously and smile more. The program helps me to stay focused on the solution and not the problem. The solution offers me relief because I don’t have to fix everything. What a revelation!

Learning to let go of control and determining what, in fact, is uncontrollable was a milestone for me. Remaining open to joy and beauty, and always feeling gratitude in my heart for my blessings.

The Bad Stuff When tragedy strikes us we are tested in new ways. I was bankrupt spiritually and was not equipped to deal with life’s challenges. Fortunately I picked up some important survival skills later in my life:

                  Gratitude: There is always something for us to be grateful for, if only the weather. Where depression and dysfunction used to be in my headspace, it’s been replaced with a new default mode. I like to keep things simple. Instead of bemoaning what I have lost, I focus on all that is left. Suffering and martyrdom had diminished my ability to live well, and I have abolished them from my life.

                  Acceptance and faith: If I can’t change it, whatever it is, I will accept it with as much grace as I can muster. And follow this with confidence in God’s plan,

                  Humor: Oh, laugh about it, Marilea. You and your problems are not that important!

                  From Each Day A New Beginning, July 3: “Finding humor in a situation, any situation, prevents us from succumbing to feelings of powerlessness. Feeling powerless, behaving as victims, came easily for many of us before we chose this program and the Twelve Steps to live by. Choosing a humorous response, opting to laugh at our situation, at any point in time, keeps our personal power where it belongs—with ourselves.”

From Shadow To Light

A movie came out a few years ago, “Drive,” and what I remember about it is the background song by Riz Ortolani. I love the words and the meaning behind them.

“Oh my love

Look and see

The Sun rising from the river

Nature’s miracle once more

Will light the world.

But this light

Is not for those men

Still lost in

An old black shadow.

Won’t you help me to believe

That they will see

A day

A brighter day

When all the shadows

Will fade away?

That day I’ll cry

That I believe

That I believe.

Oh my love

High above us

The Sun now

Embraces Nature

And from Nature we should learn

That all can start again

As the stars must fade away

To give a bright new day.


“My daughter had been hijacked by a devastating disease, and it was stealing my daughter away from herself. We couldn’t help but be swept up in the tumultuous sea of change in my beautiful daughter. She was morphing into a drug-addled stranger.

A new anxiety was building up in me and I developed insomnia. My doctor prescribed a mild sedative, Ambien, to help me get to sleep at night, but it wasn’t always effective as I tossed and turned in bed. If Gene was with me, he didn’t get enough rest either. We were both red-eyed and fatigued on many mornings, but we went to work anyway. My work ethic rubbed off on my partner.

Somehow Annie managed to graduate from George Mason University in 2004 in spite of the methamphetamine and cocaine abuse. She crashed on the sofa in my basement, on and off, oblivious to my attempts to help and support her. She was perilously hooked on those two drugs.

“Annie, what is this white stuff in a bowl on the dryer?” I asked, suspecting the worst, and furious.

“Oh, fuck off, Mom. And don’t you ever dare to touch my stuff again!” she responded with fire in her eyes. That’s right, offense is the best defense.

           Was I just a nuisance to her, or was I now the villain in her eyes? I told her to sleep elsewhere and then started going to recovery meetings for families of substance users. But it was difficult for me to grasp most of the concepts in the program. I was, at that point in my life, incapable of admitting that I was powerless over Annie’s disease. Facing that reality was counterintuitive for me. It seemed like I’d be abandoning any attempts to save my own child. After all, had I not been a poor model for her with my own deceptions regarding substance use disorder? With so much self-blame, how could I decide I was powerless now to help her?

 There was much for me to learn about substance use disorder: how to properly treat it; how to survive it.

             And in trying to survive one of a parent’s worst nightmares, my gratitude to Gene for dedicating every day to helping me get through it…what can I say?

             Boy, what a nice guy.”

© Marilea C. Rabasa and Gene Dunne, 2023. Excerpt from Gene and Toots: A Story of Love…and Recovery (Sidekick Press).

An Attitude Of Gratitude

From Courage to Change, August 30:

“Normally my sponsor would recommend a gratitude list when I felt low, but one day, when I complained about a family situation, he suggested that I list all the things I was unhappy about. Several days later my depression had passed, and when I told my sponsor about the terrific day I was having, he suggested a gratitude list. He thought it might help me to refer to it the next time I felt blue. That made sense to me, so I complied.

When I went to put this new list in the drawer where I keep my papers, I noticed the earlier list and read it once more. To my surprise, my list of grievances was almost identical to my gratitude list—the same people, same house, same life. Nothing about my circumstances had changed except the way I felt about them. For the first time I truly understood how much my attitude dictates the way I experience the world.

Today’s Reminder:

Today I recognize how powerful my mind can be. I can’t always feel good, and I have no interest in whitewashing my difficulties by pasting a smile on my face. But I recognize that I am constantly making choices about how how I perceive my world. With the help of Al-Anon and my friends in the fellowship, I can make these choices more consciously and more actively than ever before.”

‘Change your thoughts and you change your world.’ Norman Vincent Peale

I can make an effort to be grateful instead of sad. It’s a conscious choice—because I want to be happy.