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.

Waking Through Cancer?/Part 9

                                                    Listen to Your Gut

I determined to continue being a squeaky wheel. The secretary I called daily told me to pay attention, instead, to my garden. Yup, she really said that. Then she stopped answering my calls. So I messaged Dr. Malakoti and asked what the two-month delay since my last PET scan was about. I told her I was getting nervous because I’ve had symptoms for eight months without a diagnosis. A week later I got a call from the surgical suite at University of Washington.

“Hi Marilea. I’m calling from Dr. Kim’s office at UW. He wants to see you right away, tomorrow if possible at 1:00 to schedule your surgery. Can you make it?”

“Can I make it? With bells on. I’ll be there, and thank you!”

So Gene and I raced down to Seattle to meet my surgeon. He was very nice, and when I gave him the timeline of my symptoms, he looked alarmed.

“How soon can you get me in for surgery?”

“By Friday or next week at the latest. I’ll meet with my team and put you in at the head of the line. This qualifies as an emergency and we want to see what’s going on right away.”

“Oh, thank goodness! And how soon will it take for pathology to get back to you?”

“Three to five days. My nurse will come in to talk about preop procedures for you, and my secretary will call you to give you a surgical date.

And just like that I’m all set up for my second excisional biopsy with a promised diagnosis within a week thereafter. I’ve been living in limbo for so long that I’m not sure how I feel. With a definitive diagnosis  (hopefully) comes the acceptance I crow so loudly about. We’ll see if I can manage it.

The biopsy went well. And I behaved myself: no activity for two weeks.

Which I did. Just in time to get the news that I do, in fact, have lymphoma.

I’ve kind of known this all along. Arrogant? No, more like intuitive. My symptoms are glaring—and now add fatigue to the mix—so I’ve always known I was very sick with something. But the night sweats aren’t “exotic” anymore. They’re just annoying, and I would like them to end. I’m glad to have a diagnosis so that some form of treatment can begin.

This story in nine parts has been my attempt to articulate my feelings, a healthy practice. My playing “Dr. Google” may or may not have been helpful. I have found no one in the medical community, including Dr. Julia, to discuss my case frankly with me. So all my research has been an attempt to get out in front of it all, prepare myself for my reality, and feel somewhat in control of a process that isn’t really mine to control. As a friend of mine told me,

“We are of an age when the fates will play their cards.”

And so they have.

Walking Through Cancer?/Part 8

At Least, Not At This Time…”

At that last Zoom meeting with Dr. Malakoti, I complained that in all these months of tests and speculation I haven’t yet had a physical examination. I guess I got through to her because the scheduler at Fred Hutch called me the next day and made an appointment for just that, before we would decide on another lymph node biopsy. That made wonderful sense to me, and all of a sudden I felt more secure, like we weren’t just throwing darts in the air. An exam would tell Dr. Malakoti a great deal about the state of my health. And it also taught me the value of advocating for myself.

So Gene and I drove down to Fred Hutch for a noon appointment and anxiously waited to see my doctor. She felt around my body for swollen lymph nodes and measured the ones she felt in my groin on both sides.

Dr. Malakoti confirmed, “Yes, we will need to get you into surgery for this biopsy as soon as possible.”

“How soon?” I asked.

“Probably within twenty-four to forty-eight hours,” she assured me.

I waited, not too patiently, for a call from the scheduler. Nothing. I called them twice a day. Nothing. A week of waiting. Nothing.

So I decided to go down to Seattle because my son needed me to babysit for his kids. His anniversary trip to Belize with his wife was more important to me than waiting for a phone call that wasn’t coming. Life goes on, doesn’t it?

Dr. Malakoti did take the time to message me about the surgeons’ decision to biopsy the right node instead of the left. And she emphasized that they haven’t found any cancer in my tests “at least, not at this time.”

Those are ominous words. What do you mean, “not at this time…?” Well, I’ve made it to age 76 without any cancer or its symptoms. Now I have symptoms. Now they are subjecting me to invasive tests. Now they tell me, “You don’t have cancer at this time.” So what does that mean? That cancer is a slow-moving train that may or may not collide with me someday? Everyone in the world can say that, can’t they? From the day they are born. How am I any different from other people? I have some hallmark symptoms of blood cancer. So they are treating me seriously.

I guess, since no one in the medical community will talk straight with me, I will have to wait for a definitive sighting of lymphoma, or lack of it, in my second biopsy.

I asked Dr. Malakoti directly when she examined me: “What are you looking for? What do you suspect? Could I have lymphoma?”

She moved around the room to get something, but did not answer my question. Maybe any form of speculation is strictly forbidden at this point. Maybe they will level with me when they have an answer.

So I return to patience and acceptance of what I cannot change.

Walking Through Cancer?/Part 7


                                                     Still Digging

Time flies. It’s March now, a long time to not know what’s wrong with me. But the medical community operates, sometimes, at a snail’s pace.

Gene and I drove back to Fred Hutch in Seattle for my second PET scan. We had another dinner out and stayed at the same hotel so we would be close by for the 8:15 am appointment. I needled my doctor to secure two (2) Ambien for me from the pharmacy. I am extremely claustrophobic, which is the principle reason for the prescription. They’re not really “coddling” me. They just want to avoid a disaster in the PET machine.

The nurse injected the radioactive liquid into a prominent vein and waited for it to circulate in my system. It usually takes an hour, but I was asleep and didn’t notice. They walked me into the machine and then walked me out. Gene drove me home where I had another long lunch and another long nap.

Today is March 18. I had a Zoom meeting with my doctor at Fred Hutch. What are my hopes? That they found no areas of concern and refer me back to my original hematologist, Dr. Julia at Providence oncology, and let her come up with an explanation. You can’t fault the doctors at Fred Hutch for thoroughness. They seem to have pulled out all the stops.

But I’m getting ahead of myself. This is an example of my “future-tripping,” which I’ve done too much of. Enjoy every moment I have. Today is sunny and 70 degrees. I will indulge in my “spiritual” weeding (oh yes, weeding is a spiritual exercise for me!) and be grateful for the sunshine.

Dr. Malakoti, Dr. Poh’s P.A., addressed me on Zoom and said that the second PET scan showed lots of lymph node involvement. So they want to do another biopsy of another node in my groin, near the last one they removed. It’s the fastest way to rule out lymphoma. Another one? The queen (lately I’ve been demoted to princess) of silver linings sees this added surgery not only as a probable end to all our uncertainty but also a chance to learn from my mistake the last time. After the surgery, go home and stay there for two weeks. Suspend all activities.

Waiting for the scheduler to call me for the exam with my doctor, my negative side internally whines that, since I live two hours away from Fred Hutch, going back and forth on Route 5 will be another weekly hassle.

“Oh Carter, I’m so sick of the Route 5 parking lot. Now I have several more trips down to Seattle to endure.”

But my son rescues me from myself momentarily:

“Endure? How about you put a brighter face on it? Instead of dreading the traffic, the pain of surgery and the waiting for results, why don’t you and Gene come down to Seattle for two nights and spend time seeing your grandchildren and having some fun?”

Out of the mouths of babes…

Walking Through Cancer?/Part 6

                                          “It’s a fluid situation.”

The limbo I’ve been in for half a year has been a challenging test for me. A test of dealing with the gray areas in life—the ambiguities— where we want answers to a problem but don’t get them, and we find ourselves at the mercy of our coping abilities.

There was a time when I would fold in like an accordion at the first sign of frustration or depression. If I was unhappy  about anything, I tended to run away. Just retreated into various forms of self-punishment that provided numbness for a time. But that was another woman.

I’m glad I’ve evolved into someone stronger. Personal heartache has followed me much of my life, but no better or worse than anyone else’s. Yet I lacked the tools to deal with it effectively. Mired in victimhood and self-flagellation, my self-absorption buried me and isolated me from being the best person I could be. Able now to see my life through a different lens, recognizing what a privileged and fascinating life I’ve led, has opened my eyes and filled me with a sense of long-overdue gratitude.

Dr. Christina Poh met with us on Zoom a week after my second bone marrow biopsy. Gene and I sat side by side on the sofa, holding hands. No matter what she told us, we knew that we had each other. That, in itself, has been a tremendous blessing. I am so fortunate to see the silver linings manifesting themselves everywhere. There’s nothing like what I’ve been going through to sear into my heart what matters most in life. And now I have time to live that learned wisdom.

Her first words to me were, “Well, Marilea, it’s a fluid situation.”

“What does that mean, Dr. Poh?”

“It means that we don’t see cancer in any of your tests right now. Not in the two bone marrow biopsies, and not in the lymph node biopsy, reviewed by NIH, where they found nothing. We’d like to do another PET scan to see if there’s any change from the one you had in November. Maybe those results will give us some new information that will explain your symptoms and give us something more to work with. But for now—today—you are cancer-free and we can be glad of that.”

“God, what a relief!”

“Well, we’re not going to say you have cancer when we don’t see it. Chemotherapy is poison, and we can’t justify infusing you with it at this point.”

A fluid situation…meaning, yes, it could change. The earlier diagnosis of L-HES, for example, can progress to leukemia or lymphoma without proper treatment. So, am I home free? Maybe and maybe not. But I FEEL wonderful, no lack of appetite or weight loss. If ever there was a time to live in the moment, it’s right now.

The aborigines in Australia operate on two time zones: now and not now. I’ll take “now” for my happy reality and let “not now” reveal itself another day.

Walking Though Cancer?/Part 5

                                                     The Waiting

Since my first bone marrow biopsy back in October, I’ve become more pensive than usual. Just taking it all in. I’ve never been seriously ill and now, seemingly out of the blue, I have a blood disorder. There’s no precedent in my family. This past year I’ve had to say goodbye to several friends, all of whom died from cancer. I felt sad to say goodbye to them, but it never occurred to me that I would be joining them one day.

So yes, regardless of what I may have, I have been thinking about death and what it would mean to me. Elisabeth Kübler-Ross describes in detail the various stages of coming to terms with death. There’s denial, anger, bargaining, depression and, finally, acceptance. The amazing thing is that I’m in acceptance now.

“Gene, I’m not afraid to die. I’ve lived such a rich and full life. How many people can say that?”

“Not many. Good for you, Babe. It’s the faith we’ve learned in our recovery rooms that will sustain us through this. Things are happening according to God’s plan. When we accept that without resistance, getting through it is so much easier.”

The fact is, we are all going to die sometime. And we don’t usually get to choose how. But if that’s what’s waiting for me, I feel so lucky to stare it in the face and prepare. Which I have gratefully done. My estate needed to be updated for one thing. I want the most important people in my life to be well taken care of.

At this point, I’m more concerned about my loved ones than I am about me. Whatever is creating havoc in my body will continue to do so for now. But grief is for the living. My family, close friends and I are on a jet which is in danger of crashing. I want to do what I can to ensure a smooth a landing for them. 

This place where I am—this space between living and dying—can be thought of as an enormous blessing. I can use the time for maximum benefit. And what a luxury, I feel so lucky. The prospect of dying has given me new and larger perspectives on the art of living, the art of dying, and the art of forgiveness.  It’s such a relief not to be mired in pettiness and all the emotions that make us smaller than we want to be.

To convert our energy instead into loving can make us so much bigger than we were before. 

For now, though, there’s still the waiting. And when the diagnosis comes, I’ll accept it. I’ll do what I can to get healthier. And then relax and let God do His work through me. Maybe I’ll get to live a lot longer. And maybe not. But whatever His plan is, I hope I will die as gracefully as I’ve tried to live, with deep gratitude in my heart for all I’ve been given.