Patience, More or Less

CYet another unexpected gift from Cancer is an increased level of patience. I have no choice: I wait in doctors’ offices; I wait for test results; I wait for people to pick me up and drive me places; I wait for dinner to be ready – I just wait.  Sometimes, like with a CT scan, I have to wait while the disgusting drink settles in my system and then try to wait/relax in that ridiculous machine while avoiding thinking about how tiny the opening is. What I’ve learned to do is always have something in my mind that I need to mull over, or notate in my ever-present journal.  It’s one of those lessons that I would like to take back with me into my “real life” which really isn’t too far away.

I also have more patience with people.  Lousy store clerks don’t annoy me, nor do slow waiters. I’m hoping that carries back into my “real” life also – in terms of being patient with my kids.  Don’t forget, it has been almost three months since I’ve seen my children in person, though we speak once or twice every day on Skype or FaceTime.  I miss them wildly and often wonder how our family dynamic will be different after this experience.  I do hope my new-found patience carries over into it.

There are a few things, however, for which I have LESS patience.  Here are a few examples: I have no patience for people who complain and have no intention of finding a solution to their problems because it’s more fun to complain.  I no longer have patience for people who worry about wrinkles – while everyone wants to look their best, me included, wrinkles have become a badge of honor to me – a badge of honor of a life well lived.  I have lost my patience for people who drive distractedly.  Just wait until you stop to text or call! If you miss a turn, don’t try and cross five lanes of traffic for a correction; wait until it’s safe to turn around. In the long run, what’s a few extra minutes?

The thing that really gets me is people who expect other people to change their circumstances.  Women who expect men to make them happy or vice versa – kids who are supposed to make their parents happy, or vice versa. Each of us is in charge of our own lives.  In the best case scenario, we make ourselves happy and are then lucky enough to share our happiness with someone else – a spouse, a child, a close friend.  But the happiness, really deciding to be happy, is an individual choice we each have to make every day.  Some days it’s easier than others, I get that.  But I really have no patience for people who choose to wallow in misery or negativity.  In this horrible exercise called Cancer, I’ve had a lot of dark days, but none so dark that I can’t get up and live my life the next day.  That’s my favorite mantra with my son, Bailey, age 14: the greatest part about bad days is that THEY END. My friends Brian and Bonnie use the mantra all the time now, too. I have had endless support in this endeavor from wonderful friends and family who support me daily, and for this I am grateful. It seems impossible to me to wallow in lousy circumstances when there are so many people who love me and want to help me.  I have been very lucky, and lucky enough to have the ability to appreciate it.

Forgive me for sounding preachy, but I think it all comes down to gratitude really. It’s okay to spend a little time mourning for the things we don’t have, but the more useful exercise is being grateful for the things we do have.

Right now I’m struggling to have patience as I wait until next week for the results of a bone marrow biopsy. I had a clean PET scan that shows no lymphoma present, and so this biopsy, which had to be repeated for accuracy, is my last hurdle.  I am trying my best to fill my time with fun activities with friends and things that I love to do, including eating really good food.  There is a lot to celebrate already – and I’m trying to stay focused on that as I wait.  Patience… patience…

Post-Chemo Testing

CSometimes, in a case like mine, I feel badly for the doctor.  She was young and cheerful, anxious to do a good job for me.  Dr. Yu is a Fellow in Hematology/Oncology under my wonderful Dr. Siegel and I trust her completely.  This was not my first time meeting her and every time I’ve seen her, she has been competent, thorough and respectful.

My chemotherapy is now finished, and while Dr. Siegel is pretty sure that everything worked well, we have to go in and double check.  By going in, I mean scans and another dreaded bone marrow biopsy.  In June when I was first sick, I went into the hospital and spent the entire first day in testing.  In one day, they put in a port, did a bone marrow biopsy, and took an EKG, chest x-ray, CT and PET scan.  There might have been more; I just can’t remember.  The Lymphoma was in my bone marrow, making it a stage four disease.  With Lymphoma, there isn’t a different protocol for a different stage of disease, but they want to know the exact details before starting and want to know for sure that it’s gone at the end. Now that I’ve been through six rounds of chemotherapy, Dr. Siegel went ahead and ordered another bone marrow biopsy and CT and PET scan. He told me Dr. Yu is the biopsy expert and we scheduled it.

The first time I had the bone marrow biopsy, I was supposedly in “twilight” sedation, but I remember the entire thing and how horrible it was.  I also bled a lot afterward because the doctor didn’t put enough pressure on it or bandage it well.  The experience was awful and I was not looking forward to the repeat.  In fact, the idea of it was keeping me up at night worrying.  The night before the big day, I took an Ativan, a muscle relaxant, to ensure I would sleep.  I didn’t sleep a lot, but even a little bit was better than nothing.  I took another pill an hour before the test, and then one more a few minutes prior – I wanted to be as relaxed as possible.  In addition, my chemo nurse, Katy, gave me a shot of morphine to dull pain.

There was another doctor in the room to assist Dr. Yu, but I barely remember him.  It was clear from the beginning, however, that he had never done this before and Dr. Yu was teaching him.  That’s the thing about a teaching hospital: there’s always someone learning “on” you. It is a little odd at times, but generally it doesn’t bother me; it’s worth it to be under Dr. Siegel’s care – he’s teaching his interns and fellows his wonderful technique and bedside manner.  This doctor assisted Dr. Yu by handing her instruments and vials, but I never heard his voice like I heard Dr. Yu instructing him and speaking reassuringly to me.  Bonnie said he was a little green – it can’t be fun to watch this procedure from any point of view.

To do a bone marrow biopsy, the doctor has to numb the hip on the surface, then numb inside, right down to the surface of the bone.  Then she has to put a needle into the bone to draw out some blood and marrow – four vials worth –and then she has to use the needle to take off and hold a chip of bone, pulling the chip all the way out with the needle. In June it had taken the doctor two tries to get the bone out.  As we joked, I am a literal hard-ass.  But the joke was a cover; I was white with fear – and by that I mean that my brain felt like a cloud of white.  I couldn’t think; I could barely form a word in response to a question.  I felt blank and just focused on the task at hand.  I’m not sure if that was fear or medication, but emotion went out the window, replaced by determined action.

Katy was there for a few minutes and had given me an encouraging hug and wink.  Ellie was there, too, just outside the room, and she did her reassurance move where she looked me in the eye and nodded. Bonnie was in the room with me and she positioned herself by my head as I curled into the fetal position, as instructed, on the bed in the little room in the corner of the chemo center.  I just wanted to get it done.  I focused on getting through it to done.

As Dr. Yu started, she told me she would talk me through the entire procedure.  Bonnie wove both of her hands through my left hand and my right hand held tight to the bar against the wall.  We commenced.

I squeezed my eyes shut.  The initial numbing wasn’t a problem, and the numbing of the bone, while mildly painful, wasn’t a big deal.  I used a lot of Yoga breathing techniques to get through the collection of the marrow as Bonnie did her best to chat us through it, talking about TV shows, funny kid stories, some of my writing experiences, and anything else that came into her head.  Dr. Yu, for lack of a better word, had to wiggle the needle to get the bone chip off and out.  The pain referred from my right hip where she was working, directly to my left hip.  A little whimpering, a lot of Yoga breathing.  Then the worst thing: it didn’t work – she didn’t get the bone chip out.  We had to do it again.  “Just do it,” I said, gritting my teeth. “Don’t talk about it; just do it.”

Dr. Yu numbed another spot on the bone. This time, however, when she wiggled the needle, she hit a nerve and pain flashed relentlessly down my right leg.  That was the only scream I let out completely.  I couldn’t help it.  I actually swung my right hand toward it and Bonnie had to grab my hand so I wouldn’t accidentally hit the doctor.  She murmured and stroked my head and Dr. Yu told us she was going as quickly as she could.  The pain rumbled up my leg and into my back.  It seemed like ten minutes, but in reality it was only another second or two until Dr. Yu cried out, “Got it!” She quickly pulled out the needle, pressured the wound and covered it.

“You’re okay,” Bonnie murmured again, still stroking my head.  “It’s done.”

“Is it done?” I asked, “Because I really need to cry now.”  And I finally proceeded to cry, Bonnie’s voice in my ear telling me it was all right.  All done.  I let all of the angst and fear out, just allowing the tears fall.  All done.  I did it.

Bonnie and Dr. Yu helped me move from my side to my back to further pressurize the wound and I was still breathing hard as Dr. Yu was cleaning up.  She apologized again for needing to take two tries, but I knew it wasn’t her fault.  I am a hard ass right to the end. She left with a smile for Bonnie and me, telling me she’d see me next week with Dr. Siegel to give me results of the tests.

Trying to get up a few minutes later, I realized I couldn’t walk well because of the nerve hit on the right leg – it was like my leg was made of spaghetti and I couldn’t put pressure on it.  However, once I started using it and just moving the leg, the nerve calmed down and started working again.  It took a few hours, but my leg was fine.

I had a long day ahead of me with scans that needed contrast dye, and Katy was able access my port so I wouldn’t have to have an IV inserted. I had to drink that yucky barium, but then I could just rest and lie down on a table that moved me in and out of a machine. In the end I walked out of the hospital on my own steam, tired, but really just fine.  Bonnie was with me for the entire biopsy.  I still can’t believe what a rock she has been.  I wouldn’t be getting through all this without her. Ellie was there all day – the entire day – holding my arm to walk me back to the car so I wouldn’t fall.  She takes excellent care of me every day.

Dr. Yu is a compassionate and careful physician.  Her patients are lucky to have her skill and grace. I wish I hadn’t been so much trouble for her, and while I hope I don’t have to meet her often in the future, I know she will have a very bright career as a doctor.  I’m glad to have experienced her art and skill.

I’ll get back to you next week with results…

A Great Karma Story

CI squinted at the parking meter machine in front of me. All I had to do was put money in, tell it how long I wanted on the meter, and it would spit out the proper receipt for me to place on my windshield. The October morning sun lay out over the car and glinted in the windows of the tall buildings in a way that told me the car would be in the shade shortly.

Just as I put the ticket under my windshield wiper, I looked back and saw a man walking toward me. This was a city – Baltimore; there were a lot of people walking toward and away from me, but this guy was headed on a beeline right for me. I wasn’t really worried.  It was a crowded street in broad daylight. But I didn’t have any idea what he could want from me.  He was a big guy, tall and broad, with a deep chocolate complexion and a wide mouth full of teeth – one of them large and gold.  I only noticed his teeth because he was smiling.

He held out something in his palm. “Hey,” he said, “I just donated to cancer research over there.” He indicated down the street with his head. “I got this pink bracelet. You’re kinda cute. Do you want it?”

It took me a minute to catch my breath as I looked at the standard-issue pink, rubber bracelet in his hand. Who was this guy? “You know,” I said slowly, “I have cancer.”

“You’re kidding me!” he exclaimed, his palm still outstretched.

I shook my head. “It’s true. I just finished my last treatment and hopefully I’ll find out soon that I’m well again.”

“Then you have to take this bracelet,” he said, putting it into my hand, which I had put out.

“I will,” I said, nodding. “I’ll take all the good karma I can get.”

He shook his head a little. “This is so cool. Hey, you have a good day.”

“You just did your good deed of the day,” I told him, “I hope you have a great one too.”

“I will,” he assured me. The guy grinned even more broadly and continued on his way up the street.

I was headed in the opposite direction from him and grinning, too, as I clutched my pink bracelet tightly.  I might have been skipping instead of walking as I thanked the universe for thinking of me.

Learning to Still My Mind – Reiki

COne of the best things that going through cancer treatment has taught me is to be still.  Maybe that sounds a little crazy – who doesn’t know how to sit still?  But I didn’t.

In my real life, I didn’t really know how to be still. Day after day I would run around town, doing errands, taking my kids places, working, doing volunteer work, and keeping busy.  If I wasn’t busy, I felt this guilty nudge like I should be doing something productive.  I would go out with friends for lunch, go out for fancy dinners with my husband and other couples, and all the while, my brain would be running with my to-do list and other items I had to remember.

In June, however, everything came to a screeching halt with the cancer diagnosis.  I was sicker than I had ever been in my life; hopefully sicker than I’ll ever be again.  I couldn’t focus on getting myself out of a chair without outside help, much less a to-do list. During that time, when I was at my sickest, I didn’t care about productivity and I had to learn to ask for help, and my friends and family really pitched in.

In May, while still in Japan, I took a first step toward stillness and tried Zazen Mediation, but nothing could have prepared me for this. Just getting the chemotherapy required me to sit in a chair for upwards of six hours at a stretch.  My utter lack of mobility in the days following treatment demanded that I sit in front of the television for hours on end.  In fact, my brain power was so low at certain points, that I had to watch re-runs.  I couldn’t even watch first-run shows because I couldn’t understand or remember the plots! This was a totally new experience for me – my brain wouldn’t perform the necessary functions to deal with real life.

In August, at the recommendation of my cousin Anna, I tried Reiki treatment.  I had always had such good luck with acupuncture, but Anna, a Bikram Yoga instructor, reminded me that I was already receiving a lot of invasive treatment and perhaps something less intrusive to my body might be in order. Anna found a Reiki practitioner for me right in my neighborhood in Maryland.

Reiki is a Japanese healing art, developed in 1922 by Buddhist Monk Mikao Usui.  The main idea is that the practitioner lays his or her hands on the patient and believes that energy in the form of Ki is being transferred from the hands to the body underneath, which encourages healing and balance.  In Japan, the practice is more common and accepted as a healing art.  Here in the U.S. Reiki is seen as an alternative health option, best used in concert with Western medicine.  My friend Kendra, however, reminds me that my oncologist’s job is to get rid of my cancer; my job is to take care of myself and my body while in treatment.  Reiki is one way that I have learned to relax.

The practitioner I found, Naning, is an Indonesian woman, who has lived in the U.S. for decades.  Ironically, I learned upon first meeting her, that she had also lived in Japan for a number of years as a teenager, and attended the International School of the Sacred Heart, located not far from my Tokyo apartment. We had a lot in common immediately and I felt comfortable.  She has not only practiced Reiki at home for years, but she also works with doctors and nurses at local hospitals, giving them Reiki treatments to improve the care they give their patients.  The literature she gave me discusses the healing benefits of Reiki practice for patients and practitioners alike.  She also gave me a card with the five precepts of Reiki on it:

At least for today:

  • Do not be angry,
  • Do not worry,
  • Be grateful,
  • Work with diligence,
  • Be kind to people.

I still look at it every day – so I can think and remember and act in a mindful way.

Naning led me upstairs to the dedicated Reiki room in her home.  The entire room is done in white and cream colors, with blinds over the window to allow only soft light to come into it.  At the center of the room is a traditional massage table, which she drapes with colorful and silky Indonesian cloths. Naning invited me to lie on my back that first time, and from the very first second I put my head on the small pillow she placed under my neck, I felt myself letting go.  She put a pillow under my knees to increase my comfort and we got started.

With Naning, I did something that I haven’t done with anyone else – and I mean anyone, even my husband.  I took off my head scarf so I was completely bald. I wanted her to see me completely and participate fully in my own wellness.  She washed her hands, murmured a prayer, and put her hands on my forehead.  The relief was immediate.  Her palms warmed against me.  She touched my head, my cheeks and even my nose initially.

Her hands sort of naturally settled at the sides of my head, on my temples and she rested them there. She had a little timer that chimed every five or so minutes and she moved her hands to a different part of my body.  She concentrated a lot on my head and face, but she also touched my arms, my stomach and parts of my legs too.  Then I turned on my stomach and she put her hands on my back in various places.

It wasn’t like a massage; her hands were mostly warm and unmoving.  But for some reason my mind was completely still.  I’ve had it done a number of times, and it makes every single thought go out of my head.  I am only aware of my body, my breath, and Naning’s hands.  When the little chime rings and she moves her hands, I actually feel something move inside me.  I can feel the energy; I can feel the warmth.

The effects from the Reiki last for days.  I feel calmer; my side-effects ease; and it’s easier for me to concentrate on something if I have to.

I will always be grateful to Naning for showing me how it really looks to have a still mind.  I had never experienced it before.  I hope that I can carry this feeling back into my “real” life as my health hopefully returns.  This ability to focus inward for even a moment allows me to be centered and then re-focus on the parts of my outer life that need attention.  It’s a gift – and another one of those silver linings of cancer.

A Funny Thing Happened on the Way out of the Chemo Room

Katie and me!

Katy and me!

Today, as I do the day after every chemotherapy session, I took myself back to the chemo room to get a shot of Neulasta, the wonder drug that boosts my white blood cells, which chemo kills off, rendering me immunosuppressed.  The Neulasta rebuilds the white blood cells within about 10 days, and in the meantime, I take a prophylactic antibiotic.

Katy, you may remember, is MY nurse, and she was her usual cheery self as we discussed podcasts and walking, and other inane things as she readied the shot and my arm.  The whole process took about ten minutes.

Just as Katy was walking away, another patient was walking toward us.  “What can I do for you Florence?” Katy asked.  Florence was an older, maybe 75-year-old, African American woman with not too many teeth in her head.  She limped slowly toward us, and anyone could see that with her beautiful hair and flashing eyes, she had once been a real spitfire.

“I want to talk to this young lady,” Florence said, motioning toward me.  She proceeded, with Katy’s help, to sit on a stool near my feet, as I was still sitting in one of the big chemo recliners.  Katy looked a little nervous, truth be told.

“Young lady,” Florence began, “I want you and Katy to hear this because it doesn’t get said enough.  I was diagnosed with the cancer about ten years ago and this here Katy lady has been here for me the whole time. Now I’m not always in the best mood when I come here, but Katy and these other ladies are always as nice and as sweet as can be.  It don’t get said enough and I want her to hear it, but Miss Katy is always patient with me even when I’m as ornery as can be.”

“She’s wonderful,” I replied, awestruck.

“She’s the best there is,” Florence agreed, “I don’t believe it’s a job for her to be here. I believe she was brought here for a reason and she is as wonderful and patient as can be even when I’m in a bad mood and hard to deal with.”

With that, Florence started to get up off the stool, and Katy again moved to hold her arm and help her with her two bags.  “You’re a nice young lady and you’re going to do just fine,” Florence pronounced.

I couldn’t reply that time.  She shuffled away with her cane, and I just sat there, dumbstruck.

“Are you okay?” Katy asked.

“I am,” I said and realized that there were tears flowing down my face.  Katy hopped over to the desk and got me a tissue box. She patted my back for a minute.  “Are you okay?” she asked again.

“I’m just feeling so lucky, so blessed,” I sobbed, unable to stop myself.  For all of the crap of cancer, there are a whole lot of wonderful people who’ve been watching over me from near and far.

“Well there’s a good energy coming off from you, Miss Aimee,” Katy said.

I finally got myself under control, stood and hugged Katy.  She patted my back again.  “See you next time,” she said with a smile and went to minister to her next lucky patient.  I hope she felt as good as both Florence and I meant her to.

I don’t know where Florence came from or who sent her to me when I’m feeling so crappy today, like I always do one day post-chemo, but I am grateful.  I know I’ll feel better tomorrow.  And I just know in my heart of hearts that Florence is right: I’m going to be okay.  I’m going to do just fine.

The High Holidays – At My Home Away From Home

The shofar made me cry this year.  I was sitting between Ellie and Steve like any good daughter, and the hush of readiness came over the sanctuary. The Rabbi chanted the first “Tekiah” and the shofar’s clarion call rose through the hall and touched the souls of those assembled.  Without warning the tears jerked forth from my eyes like a faucet turned up too high, too fast.  For centuries Jews have gathered together at this time of year to thank God for the gift of last year, pray for another year of life, confess sins and beg pardon.  It’s a part of my life as much as putting on shoes to go out – whether I’m thinking about it or not, being Jewish is part of my identity and heritage.

One of the things I love about being Jewish is the idea of continuity – of belonging.  I was hearing that shofar at 11am in Washington DC.  At 11am Tokyo time, thirteen hours prior, my husband and children had heard the same call, said the same prayers, heard the same call.  My tears, naturally, were for them, mourning that I was not with them to hear it, nor they with me.  I have such vivid memories of both of my children’s very first Rosh Hashanahs.  I held each of them as babies as the sudden blast of the shofar startled them and I comforted them, whispering the promise of connection they would feel whenever they hear that sound.  It connects them to generations past; it connects them to generations in the future. This year we are not connected physically, but with that shofar blast, I could feel them there with me, reminding me that with God’s good help, we will be together next year at this time.  And so, the tears.

Ellie and Steve’s synagogue, B’nai Israel in Rockville, is a big place – 1500 member families.  I had been there before for various events, so it was mildly familiar with its beautiful wood and stone sanctuary and center area from which the Torah is read.  Having grown up in a large, Conservative synagogue, the atmosphere, as well as the liturgy, was familiar.  In fact, I’d venture to say that despite its large size, the synagogue was welcoming to me.

The two rabbis of the synagogue welcomed everyone to services, and on erev Rosh Hashanah, (the night before – all Jewish holidays begin at sundown the night before) as well as on both days of Rosh Hashanah, spoke of welcoming – of belonging.  Their sermons sounded like they were written for me, aimed at me, spoken in light of my situation.  They spoke of gratitude, of making every second count.  Rabbi Schnitzer referenced a book by Joan Lunden, saying that people might not remember who won the Pulitzer Prize or the Heisman Trophy, but they do remember the kindness of a friend, the encouragement of a teacher or the touch of a loved one.  He gave us the number of seconds in every day and urged us to make every one of those seconds count – every single day.  He spoke of a righteous man on his deathbed not saying that life had been good to him, but rather, saying that he was good to the world.  Rabbi Safra continued the theme, discussing how God had made the world, but made it to be imperfect, and thus God shows faith in man in his ability to repair the world, and so we are in partnership with God. As we are faithful to God, so is God faithful to us.

Perhaps these sermons seem predictable to you, even proscribed. To me, fighting cancer every day, this entire holiday – indeed this SEASON of holidays – reminds me to be grateful for the people around me, the life that I have, and the self-awareness to be so thankful.  Jews around the world are listening to similar sermons, repeating the same exact prayers, and to me it’s a comfort.  These ideas and practices were around long before my birth, and will be around long after I’m gone.  Continuity.

My Grammy used to say that a human being’s greatest need is to belong.  I believe her.  At that moment, hearing the shofar in Maryland while sitting between two extra parents, even though I was sad because I wasn’t with my husband and my children, I still belonged.  Indeed, it was the community that sustained me and nurtured me to reach this point.  Ellie and Steve, my mom and dad, my friends, my family, my doctors – all of them are the community on which I rely for my very existence right now.  I am grateful to each person who comprises that community for helping me along this journey.  I welcome the year 5774 with a grateful heart – grateful to hear the shofar, and grateful to belong.

G’mar Chatimah Tovah –  may you be inscribed for a year of health, love prosperity and peace.

Sometimes Beauty IS Skin Deep

makeupThe side effects of chemo are getting a bit stronger as I’ve gone through the treatments, but I’ve managed them pretty well so far.  As expected, I lost my hair fairly quickly.  Now I’m losing my eyebrows and eyelashes.  I’m not normally so vain, but I’ve been feeling like my face is a little “blank” as the brows and lashes thin out and disappear.  So today, I took myself to Nordstrom and the Bobby Brown counter, where I met Fiona, yet another angel on my journey.  I explained my issue and Fiona spent at least an hour with me, not just doing my makeup, but showing me everything she was doing, step by step.  She showed me fionacolors and brushes and described uses for each item she put on my face.  She helped me use the brow brush to create natural looking eyebrows to frame my face and line my eyes from the inside to the outside to create the illusion of lashes. She also helped me figure out what I “needed” to create the look as opposed to what was just an extra benefit.  I bought a lot of things, but with no pressure. Fiona made me feel like a million bucks – and definitely gave me back a modicum of control over my appearance.