My First Medical Experience – A Real Gift

COne of the very first people I met on my cancer journey was Dr. Irnest Oser.  Dr. Oser is a general practitioner and pulmonologist in Silver Spring, Maryland.  Ellie recommended that I see him and I was able to get an appointment with him for the Monday I came into the U.S. in June – only two days after my arrival.  Meeting Dr. Oser set me on the path of the “right” treatment, and I will always be grateful for the care he showed me.

I had found out about the lymphoma two days before leaving Tokyo.  I hadn’t been feeling well and was having trouble breathing. It didn’t make sense that I was in pretty good shape yet huffing and puffing on a flight of steps. It had been going on for about two weeks so I spoke with my regular physician, Dr. Thomas Lomax, an Australian who practices at our international clinic in Tokyo, who ordered a chest x-ray for me, with the idea of getting me on the right antibiotic for what he saw on the film. Thank goodness he’s thorough, because my left lung was 75% full of fluid. A CT scan just a few hours later showed that I had cancerous lymph nodes leaking fluid into my lungs. (Later Dr. Lomax confessed that he was afraid the fluid had been hiding lung cancer so he was actually pleased with the diagnosis of lymphoma – thank goodness he didn’t share that tidbit with me right away!) Cleared to fly, I barely made it to the States.  I don’t really remember the flights, but somehow the kids and I made it, and muddled through the weekend until I could get to Dr. Oser.

Ellie drove me the 20 minutes into Silver Spring and my mother flew in from Florida to join us there, also.  This was scary stuff.

When Dr. Oser walked into his office to meet me, he found me and TWO anxious mothers. (Ellie and my mom are college sorority sisters, and they joke about being my two moms!)  He sat down behind his desk across from all three of us and verbally poked and prodded me to get a medical history.  I told him everything I could think of with both Mom and Ellie filling in blanks when I faltered.  Then all four of us moved to the exam room.  Dr. Oser listened to my chest and heart and examined my belly (with its ridiculously enlarged spleen readily apparent). He told us that based on the CT report and looking at me, that he agreed I most likely had lymphoma to be confirmed by a surgical biopsy later.  He outlined what my next steps had to be  (biopsy, lung drainage, meeting an oncologist) and promised us a list of doctors to call. He then told us to go back to his office while he looked at the actual CT film, which I was carrying.

Dr. Oser stopped in the door-frame of his office and surveyed the three of us before walking in.  “You know, Aimee,” He said, “I forgot to take your blood pressure.  Why don’t you come back to the exam room for a second.  Moms, you can stay here.”

I heaved myself off of the chair – at that point I was so sick that every movement had a cost – and back across the hall and onto the exam table.  Ellie and my mom stayed put.

In the room, Dr. Oser took my elbow firmly in his hand like he was about to put a blood pressure cuff on it, but instead he leaned forward and put his forehead directly against mine.  “You’re going to be okay,” he said.  “You’re going to stay calm and get through this and everything will be okay.”

His eyes were right up to mine and I nodded.  I had to trust him. Relief suffused my body and I felt my shoulders lower with the released tension. He nodded back at me and pulled back, keeping his eyes on mine.  He did then actually take my blood pressure, which had dropped since the nurse had taken it half an hour earlier.

My first gift with my cancer was Dr. Oser.  He knew that I needed reassurance.  He knew that I needed to be momentarily separated from my two loving mothers who were as anxious as I was.  I didn’t have to say anything aloud; he just knew.  Because of the path on which he sent me that day, my oncologist, only nine days later, as I took my first chemotherapy, commented that I set a land-speed record for the time between diagnosis and treatment.  Once I had that initial appointment with Dr. Oser, everything just fell into place for me – and I started on the path to healing.  I am grateful to him and I will never forget the doctor who took the extra minute for me – forehead to forehead.

The Chemo Room

In the big recliner in the chemo room

In the big recliner in the chemo room

Every three weeks I have chemotherapy at The Katzen Cancer Center at the George Washington University Hospital.  It’s not the place I would chose to spend my time, but since I have to have chemotherapy, this is the place I want to be.  Every person, from the women who check me into the center, to the people who draw my blood, to the people who schedule appointments all work together to ensure that my experience is as painless and easy as possible.

The room itself is very sunny with about fifteen chairs – or chemo “stations” if you will.  There’s a big desk in the middle where the administration of the room happens, but it’s all so open that every nurse can see every patient all the time.  Each chemo station has a huge recliner and a small table along with separate lighting.  The nurse can come and do what she needs to do with each patient in a well-lit environment, but then adjust the lights so the patient is

It's open and bright!

It’s open and bright!

comfortable.  I often sleep a lot during treatment, so I like the lights lower.  There is a chair for a companion and plenty of room to store stuff and move around.

It takes a really special person to be an oncology nurse and this staff is no exception.  Every person is great, but every time I’ve been in the room, I have been under the care of Katy Dolan, who makes me feel cozy and comfortable.  She

Katie and me!

Katy and me!

tells me what’s happening every step of the way and is as gentle as possible.  I’m so grateful to her.

Every person’s experience with chemotherapy is different.  Some people stay awake, some sleep; some people needs four hours and some need longer.  I am taking not only chemotherapy, but also a monoclonal antibody called Retuxin, which is a drug that attaches itself to bad “B” cells in the body and kills them.   I have  B-cell lymphoma, so I need to get rid of these B cells, so this is the drug I need in addition to the traditional anti-cancer drugs, or chemotherapy.  Unfortunately I had a reaction to the Retuxin early on, so the nurses are extra careful when giving it to me, meaning they drip it into my port very slowly and pre-medicate me to prevent reaction.  All of that means that my version of chemo/Retuxin days are very long and very sleepy.  I am in the chemo room for about seven hours and I snooze for most of it.

My dearest friend Bonnie has accompanied me into the chemo room twice now, cancer centerand she is as impressed as I am.  Bonnie is a chemistry professor at the University of Maryland and keeps track of my drugs, my blood work, and every other scientific element of my disease and treatment that is of concern to her.  Katie explains every step to Bonnie as well, and in a way that is better for Bonnie – on a scientific level that I don’t need to know.

With Dr. Siegel

With Dr. Siegel

The other amazing element to this entire process is my wonderful Doctor, Dr. Robert Siegel, who is the head of the Hematology Oncology Department as well as the Director of the Katzen Cancer Research Center.  I’m so lucky to be under his care, and under the care of his team.  He supervises a team of interns and fellows and to a man, each one under his tutelage  is as kind and gentle and encouraging as he is.  Dr. Siegel answers not only my questions, but also Bonnie’s and my husband’s.  Knowing that Marc is in Tokyo, he offered up his email address and told Marc that he would answer any questions he had.  Dr. Siegel always asks about how Marc is holding up so far away, as does Katy.  I always feel like my whole self is being cared for, not just my cancer.

I am so lucky to have my treatment in this wonderful place with these caring, terrific people.  Doing the treatments  is not a choice – to get well I have to go through all of the treatments, including the yucky side effects.  I’m also extremely lucky that the treatments are going well. So if I have to do it, I’m grateful to be doing it here.

Cancer – A Few Silver Linings

CMy husband Marc has taken the kids back to Tokyo to re-start their “real” lives.  Bailey is a freshman at The American School in Japan (ASIJ) and my daughter, Sydney, started middle school, grade six, at Nishimachi International School (NIS).  Both kids have been at their respective schools for a while and I couldn’t bear to take them out of their comfort zones, though I’d much rather have them here with me. (Look for a forthcoming post on the hardest thing I’ve ever done – I’m just not ready to write it yet.) They are for sure in the exact right places for them.

Though this whole cancer thing sucks, I have found a few silver linings to it, and I’m pleased to say that Marc has also found a few here and there. Case in point: the other day he said to me, “Sydney is really fun in the grocery store.”

This is something I knew already.  Sydney is very good at spotting items on the list.  She likes menu planning and then buying the planned ingredients.  She likes finding a new item to try and even feeling produce to check for ripeness.  She’s a good little shopper.  In addition, when we’re in Japan, she likes reading signs, figuring out what things are, and calculating weights and costs in grams and yen.  Her Japanese reading and speaking skills are coming along nicely and the grocery store is good practice.

Marc is also an excellent Japanese reader and speaker, so in addition to all of the fun things about Sydney in the store, he was able to show her certain Kanji symbols and discuss the language issues via food, Sydney’s favorite subject, which made everything more interesting for both of them.  Marc has always enjoyed the kids musical and sporting events, and he and Bailey can discuss fantasy football and other sporting events and issues ad nauseum. However, it has been harder to find things he has is common with our girly-girl and so the grocery experience was great in more ways than one. Marc has been a great dad from day one with our kids, but he has never been the primary caretaker of them; that has been my job, except for a few weekends or a week here or there when I’ve been away.  Now he has stepped up to do it in a big way while I stay in the U.S. for treatment – and is doing a great job of it so far.

So here’s the benefit: some serious dad and kid bonding. If I wasn’t sick, Marc would never have discovered Sydney’s talents in the grocery store. That very same day, the two of them went out to the ever-popular and crowded Azabu Juban festival near our house and had a blast together.  If I was there, I would have gone, and though I really miss being there, I am delighted that my daughter and her dad had the opportunity to experience it together differently from how it would have been if I was there.

We have such great friends in Tokyo that I know Marc is going to have a lot of help with the kids – homework, caretaking, meals, etc – in the next four months while I’m in the U.S. But I also know that he will do a great job with everything himself and he and the kids will forge a new, strong connection that they might otherwise not have done.  For that I am not sorry – it’s a little perk in a hailstorm of sorts. So in the end we will all emerge from the experience hopefully healthy, and in some ways be even better and stronger for it.

What Are You Doing?

cooking 1Sometimes people have asked me what I’m doing with my time since being diagnosed with cancer.  I must admit that some days it takes a lot of energy to simply exist.  Luckily those days are few, and when they happen (predictably on days 5-8 after a chemo treatment) I just stare at reruns of “NCIS” without even seeing them.  However, I do get out to see friends, to go shopping, to have a meal, on almost every other day of the treatment cycle.  Even if I’m feeling blue or tired, I force myself out for a little while every day.  I’ve also learned to force myself to go out walking on days when I feel okay and the weather is good.  (My definition of “bad” weather has expanded to include high humidity however – sweating never feels good, but feels particularly yucky on a covered, yet bald head.)  So I am out a lot.

One thing I have always loved doing is cooking.  I find that it’s the one thing that completely empties my brain of all other tasks and trials.  It’s not that I find it relaxing, but I can’t multitask when I do it.  I have to concentrate on the task at hand or risk making a mistake that ruins the dish.  I also find it tremendously satisfying to make things that other people get to eat. When someone I love pronounces a dish I’ve made as yummy, it’s the highest form of flattery and satisfaction to me.

Recently, since feeling even better, I’ve done more cooking.  I made a Japanese dish, beef wrapped sauteed vegetables, for Ellie and Steve – one that I learned at a cooking class I took in April.  It wasn’t perfect because I couldn’t find thin enough beef, like that used to make shabu-shabu, which I would have bought in cooking 2Tokyo.  I found thin beef, but I should have pounded it thinner.  That’s okay – it was still yummy, even if it didn’t look as perfect as I wanted it to.

Then, this week, I took it upon myself to make a full meal including dessert.  I had been having conversations with my friends Maxine and Bonnie (separately, I might add) about cooking and how seldom people cook from scratch anymore.  True foodies cook from scratch though, and I do like to consider myself a foodie, not just a gourmand! No one has time, and convenience foods are so readily available that many people rely on them exclusively in the U.S.  Cooking and eating are such arts and the preparation of a meal takes a lot of time that most working people don’t have anymore.  But time is one thing of which I have in abundance right now.

I went to the grocery store last Tuesday and slowly gathered ingredients.  I then spent upwards of three  or four hours in the kitchen and later tried not to feel disappointed as the meal was consumed in ten minutes.  Ellie and Steve are a pleasure to cook for, though.  They appreciate each flavor and are generous with compliments.  I didn’t care how long the meal took to make – the looks on their faces as they enjoyed it was more than compensatory.

My only food restriction from the cancer treatment is that I can’t eat fresh fruits and vegetables – nothing raw.  The doctors are afraid that if there’s one bit of bacteria that’s not washed off properly, then I might get sick in my immune-suppressed state.  Getting sick when one is immune-suppressed is dangerous.  So I can eat whatever I want – as long as it’s COOKED.

I made a Food Network shrimp dish for a main course.  Craving tomatoes and berries, I made a caprese salad with roasted tomatoes a la the Barefoot Contessa.  I also made ricotta cheese toast with caramelized tomatoes from Martha Stewart.  For dessert, also from Martha Stewart, we had blueberry and strawberry scones with cream cheese whipped cream.

Cooking is a great way to spend my time as I go through the treatments.  It occupies my time, empties my brain and delights my tummy.  So that’s what I’ve been doing.

Conversations With Brian, or, What I’ve Learned So Far

CMy friend Brian Ledell is my favorite “Words With Friends” buddy.  Some people just play the game, which is an online version of Scrabble, but he and I chat a lot, too.

Last week I made a move on the board at about 3am.  “Insomnia,” I confessed on our chat.  When he awoke a few hours later and made his own move, he sympathized, telling me how much he hates when that happens to him.

Because I’ve known him for so long and because of our close relationship, I decided to put myself out there and just be honest with him.  The following conversation ensued:

Aimee: Confession: I’m taking something to quiet my brain at night.  I’m upbeat and positive all day.  Nights are tougher.

Brian: If I was going through what you’re going through I would be taking all the anti-anxiety drugs I could get the doctors to prescribe for me and would not feel the least bit bad about it.  Life is stressful enough in normal times.

Aimee: And this is why I love you – permission to be imperfect. I really work on that Superwoman mask but sometimes it just won’t stay on. I’m learning that not only is it okay to BE fallible; it’s okay to let people know you’re as flawed and faulty as everyone else.

Brian: You are too kind! I agree with you, though – asking for help is not an easy thing to do.  I think you’ve handled it very well. I’m proud to know you.

Aimee: I am so control freaky that I’m usually the helper, not the one asking for help. It’s a challenge, but I’m learning.  I’m learning a lot of things lately!

There are several important items in the subtext of that conversation, not the least of which is that Brian is an excellent listener.  For me, though, the crux of it is that I am learning.  Even when I’m going through this sh***y exercise called cancer, I continue to learn about myself, the people I love, and the world around me.  I’m reading a lot.  I’m continuing to write. I get messages from friends that brighten every day, and when I feel well, which, luckily, is many many days, I get to see several of those wonderful friends who live nearby – and sometimes even people who make treks of many miles to see me.  On most days I’m feeling quite lucky as I learn.

In order to maintain my own sanity and get through this, I have to stop trying to be perfect, express gratitude, and allow myself to ask for help when needed.  Learning to do these things has not been easy and I’m still not so good at it, but I’m working hard. They’re good lessons and I just hope that some of them stick with me beyond (God willing) cancer.

Cancer: an opportunity for a growth experience.  I’d rather not have the opportunity, but since I have no choice, I will take it.  Thanks, Brian.

The Gift of a Haircut

nancy picBefore she started, Nancy put her hands on top of my head and closed her eyes for a few moments.  The warmth of her palms penetrated the wisps of hair still loosely attached to my scalp and suffused me with a measure of calm about a procedure for which I felt far from ready.

“Do you mind if I pray over you?” she asked.  I appreciated the asking; Nancy is a Muslim and I am a Jew, but I was in no position to hedge my bets – all prayers are gratefully accepted.

It was only a few days before my second chemotherapy session and my hair was falling out rapidly. Feeling pretty well, I had been out to dinner with my friend Brain the evening before and he had reached over and pulled a hair out of my wine glass. It was unnerving.  I called Nancy that night and she agreed to come over right away.

Nancy Emanian, who works at Images Salon in Chevy Chase, MD, has been cutting, coloring and styling hair forever, and specifically cutting my Maryland Mom, Ellie’s, hair for upward of twenty years.  I visit Ellie and Steve every summer when we are in the U.S. and upon their suggestion, I always get a mid-summer haircut from her. When Ellie called Nancy to tell her that I was staying with them for an extended period, and the reason, she immediately offered to come to Ellie’s house and shave my head when the time was right.

Ellie set a sheet out to cover the kitchen floor and put a chair in the middle of the wigsheet.  Nancy put a cover over me, part of a kit she had taken home from the salon in order to meet me.  Before I sat down, Nancy reminded me it was Ramadan, the holiest month for Muslims.  Nancy is from Iran, and her culture and language and religion are very much a part of her everyday life, even in suburban Washington DC.

Nancy’s voice is low and she sometimes has a way of slurring English words together.  She has a heart of gold, and I always feel like I’m her most special customer that day.  I imagine every one of her clients feels that way.  But that day she and Ellie were both focused just on me and making this experience as painless as it could be.  I sat down on the chair.

After she had her hands on my head, she pulled out her scissors.  She murmured a lot as she worked, and the room was pretty quiet, save for some classical music suggested by my friend Saori that I put on my iPod.  She first used the scissors to take off as much hair as she could.  I could tell that she was just pulling on some of it and it fell out into her hands.  Every now and then she would stop, lean in toward me, and caress my shoulder or my head as she prayed.

At first the tears leaked out of my eyes as Nancy worked.  My hair.  It felt like my last vestige of “normal” was being taken away from me.  I already had body problems.  I had the port protruding from the right side of my chest.  I always had a mark on my arm from blood being taken.  My skin was so dry it was flaking regularly.  And for the first time in my life, and hopefully my last, I was too thin.  In the first weeks of being sick, eating was simply not an option.  Everything made me feel stuffed or sick.  Then the after-effects of chemo made everything taste metallic, so I didn’t eat much then either.  Taking a shower had become a nightmare because I didn’t want to touch or look at my body anymore.  My dear husband solved part of that problem by buying me the largest shower “puff” he could find and a lilac scented bath scrub.  Bless him, the puff was even purple, my favorite color.

But Nancy didn’t let me cry.  She caressed my head and my shoulders, murmuring still in Farsi, her hands still warm.  Ellie stepped in front of me, too and held both my hands in hers.  She nodded at me.  Ellie nods at me to reassure me and with her reassurance and strong belief, I really have no option other than to take a deep breath and nod back.  It’s like a signal between she and I.  She signals to me that I’m okay – that I’m going to be okay.  Through all of this, that’s how she has handled it, and this is why I love her so much.  I’m always okay in her eyes, which makes me believe it for myself.

Minutes later when Nancy said her Amen (I’m not sure of the proper form in Farsi), kissed my forehead and resolutely plugged in the razor, I was no longer afraid.  She shaved my head down to a nub, all while exclaiming over the perfect shape of my head.  Ellie said she couldn’t believe how cute I looked without hair.

With the two of them telling me how adorable I was, I did take a look in the mirror pretty quickly.  It wasn’t as bad as I thought.  But before I could stand in front of the mirror too long, Ellie and Nancy were both shooing me out, urging me to take a quick shower, and then bring my wig downstairs for Nancy to style.

What happened next was the real gift of the day.  I showered, put on a little makeup and a new dress my Aunt Helen had sent as a treat for me.  I put on the wig and Nancy touched it up a little so it fell neatly around my face.  Both Nancy and Ellie were still exclaiming over how good I looked, and it didn’t even matter if it was true or not, they both made me believe that I was attractive no matter what.  As a bonus, I brought a scarf downstairs, and Nancy wrapped it around my head and showed me how to twist and tie it properly.

Nancy took what could have been a nightmare experience and made it into something kind and gentle, and even loving.  She brought a feeling of grace to the whole procedure.  I will never forget it.

The Big “C” – Control

C“Come on, you need to go to the bathroom. Let’s go.”

The command came from a compact woman with a set mouth and a helmet hairdo.  I was standing somewhere between the gurney and the hospital bed, supported by my husband and I could only stare at her.  I just arrived in a hospital room on an oncology floor that would be my existence for 5 more days. Between 6:30am and that moment, somewhere in the 3pm area, I had had a port for chemotherapy inserted, a bone-marrow biopsy, a CT scan, a PET scan a chest x-ray and an EKG.

I paused for a moment, gathered a little strength and said, “I’m sorry, could you ask me that a little more nicely please.”

Thankfully, six weeks later, I can tell you that awful woman was the only person I have met on my cancer journey so far who has been anything less than wonderful and loving.  And I only saw her for a few hours that day until she went off duty by 7pm.

But what happened next proved apocryphal.

Another woman in the room, a young-ish nurse named Jennifer, told the horrid woman that she’d help me get settled and she should check in later.  The horrid lady left.  As Jennifer gently helped me change a dressing and get a new hospital gown she said very quietly, “you have to give up control.  From here on out, you don’t have control.”

The words slammed into me like an out-of-control truck on a rainy night.  She is absolutely right.  From a medical standpoint, I have had to lie back a thousand times and let someone else DO something to my body.  Sometimes it hurts; most of the time it doesn’t.  Most of the time the inflicting nurse or doctor or technician is so apologetic and careful.  But it doesn’t change the fact that I am the object – my body is the object being acted upon and the actor in this situation is not me.  It’s all in the name of healing and getting well again, but it’s still completely out of my control.

I am only six weeks into this treatment plan.  I have a minimum of three months to go.  I go through all sorts of motions to grab control of what I can – which lab I use for blood draws, which chair I like in the chemo room, or even voicing that I prefer cranberry to grape juice, but it doesn’t change the fact that my control over my own body is all but gone.

As I came home from the hospital, I realized that there were other things over which I had no control as well.  My kids were being taken care of by other people; I was at the mercy of airlines in allowing or not allowing us to change around all of our summer plans; I relied on other people for meals.

In case you don’t know it, I am one of the most control freaky people I know.  I arrange my kids’ schedules within an inch of their lives. I am always the go-to person for the PTA or my pet charities if there’s something to be done. I don’t sit back and just take things – I dish them out. I have always said that I’m the good type of control freaky: at least I am aware of it.  Now, however, I am learning to let go of all control.  Most days I can do it gracefully, but there are some times when I just get so blasted mad about the whole thing.

So to me, “The Big C” as they say, means so much more than just cancer.  It means control.  I don’t know if I’ll ever accept it completely and I don’t know if I will emerge (God wiling) from this experience as a different type of person, but in the meantime, it’s interesting to think about as I sit in my chair in someone else’s home, reading a book generously put into my hands by someone else, and waiting for yet another person to tell me what’s for dinner tonight.

I’ll explain more as we go along. Come join me on my journey.