Fast Walking My Way to Family Tradition

Last week I wrote about creating new memories and traditions to compensate for a parentless (or soon to be parentless) problem: the fading family blueprint.

Along with important medical and family history, I’ve lost little traditions and rituals that my mom and I shared, such as snacking in bed together while watching MLS soccer games. Going to see a movie (99.2% of the time it was a romcom) followed by a visit to Cheesecake Factory – a chain restaurant favorite. (Don’t turn up your nose until you’ve tried the Luau Salad followed by Aunt Linda’s chocolate cake.)

And while I miss these mother-daughter moments, the 18 months following her death have brought new traditions and rituals. For example, as honorary member of the Rutenberg family, I have a beach house! It’s in Bethany Beach, Delaware, and I enjoy sunning on the deck, visits to Candy Kitchen and fast walks in the morning with family.

Fast walking with Debbie actually became a ritual for me before Mom died. Debbie and I fast walked for the first time a couple months after her diagnosis. It took some time that day to learn the stride and how to pump my arms to my advantage so I could participate in the conversation without losing my breath. (When Debbie is feelin’ it, her pace is FAST.) I don’t exactly remember what we talked about that first day, but after a full hour of walking and talking, I remember feeling the best I had felt since before Mom’s diagnosis.

Subsequent walks included conversations about my parentless fears, her concerns about losing a best friend, realistic expectations for my mom’s prognosis, schoolwork, finances and much more. As my mom’s disease progressed, our walks together became more frequent.

We tackled the world on those walks (and we still do). When my mom was sick, we troubleshot her treatment regimen, scheduled chemotherapy appointments, brainstormed ways to elevate my mom’s mood and ultimately planned her funeral and my life after her death.

When I’m in Bethany Beach with the entire Rutenberg family, our walks include different combinations of us (i.e. whoever is not suffering from sports injuries or bouts of laziness). During our walks, we are open, honest and matter-of-fact with each other, even when we disagree vehemently. And no matter what, we always try to beat our previous time – Debbie, the fastidious timekeeper, with the beep of her Timex sports watch bookending our walk.

Today was my last fast walk at the beach for the season before I head back home to San Francisco. I know there will be more fast walks (on both coasts) across the coming year – some of those walks with a Rutenberg by my side and some with one chatting away in my ear, through my iPhone. But I can’t wait for our next fast walk at the beach, a newly born family tradition that brings me great pleasure and is probably a lot healthier than Cheesecake Factory’s chocolate cake.

The F*@% It (Er, Bucket) List

So, the question is this: If you know your life has an imminent expiration date, how do you choose to live the remainder of it?

We’ve all heard people talk about their bucket lists. They would travel the world, climb Mount Kilimanjaro, go bungee jumping, and maybe buy a flashy car. I’d like to believe that I have a list too. If I were to conjure one up, it might include travel, front row tickets to watch my favorite bands perform and several bonfires on a beach (s’more making mandatory).

When my mom was diagnosed, she didn’t have a bucket list. She had a f*@% list. She put her head to the ground, focused on the demands of chemotherapy and did little else. When friends urged her to take an extravagant trip or try a new, fancy restaurant, she said, in a nutshell, f*@% it. (Of course she didn’t actually say that since she never cursed, but I’m paraphrasing here.)

And the truth is I understood. My mother was never much for indulgence of any variety even when she was healthy. Her idea of a perfect night was reading the paper in bed, while talking on the phone to me or to a friend with Letterman or Leno on in the background. If the ordinary, simple pleasures satisfied her then, why would an international trip be more fulfilling now?

When forced to say how she wanted to spend an afternoon if she wasn’t bedridden, she’d reply that she wanted to be with family and friends. That’s all she ever wanted. Not exotic trips, not restaurants outings, not even books, music or TV.

One time, during a hospitalization toward the end of her life, she said, unprompted, life is my family and friends. That’s what is most important, she said with misty eyes. So, I suppose, in the end, she simply wanted to be surrounded by her life – the people in it.

When I really think about it, I believe I’d probably act the same way. Maybe I’m just my mother’s daughter, but saying f*@% it and living life as you’ve always enjoyed it, seems meaningful enough to me.

Family Blueprint

This is embarrassing. I don’t exactly know how my father died.

I was at a doctor’s appointment last week, and because I was a new patient, I was asked to fill out a bunch of paperwork. Afterward, a nurse walked me through a family history questionnaire. When it was time to share my father’s medical history, I hesitated and then said:

“I know he had a heart attack (that he survived), and I know he was diagnosed with a type of lymphoma (that was treated). I think the cancer came back after several years of remission, and I assume it spread and became incurable.”

My father died when I was 18 months old. I remember my mother talking to me countless times about his death while I was growing up, but the memories are blurry. Retaining information about my father’s cause of death was never a priority. As a kid, just being fatherless was tough enough because anything that makes you different makes it more difficult to be just like everyone else, which, of course, is what you’re striving for in elementary school.

Today, I wish I had listened more closely back then. Now, being parentless, I am confronted with an issue that, for lack of a better term, I’ll call “the fading problem”.

If my mother were around, I would’ve called her for the answer to the nurse’s question. Two months ago when I had a sinus infection, and I couldn’t remember which antibiotic caused me to break out in hives when I was 10 years old, I could’ve used her help too. Last week when I had an urge to make chocolate cake – not just any chocolate cake, but the really rich kind with powdered sugar sprinkled on top that my grandmother taught my mother to make – I resorted to a couple handfuls of peanut M&Ms. Because without my mother, I was without a recipe.

Now I don’t want you to think that my family history and sacred recipes are lost forever – There’s an old shoebox with typed Rolodex cards with recipes somewhere in a special storage attic in Maryland. And what I’m fuzzy about concerning my father’s medical past, I make up for tenfold regarding my mother’s medical experiences!

But without either parent around to remind me of things, it sometimes feels like my family blueprint (a figurative genetic code of sorts) is fading along with all the tucked-away recipe cards in the storage attic.

That said, the fading family blueprint is not something that’s top of mind every day, nor does it significantly impact my mood. Never has someone stopped me in the street and said, “Quick! When did your paternal grandfather die, and was your father a light to moderate smoker in his twenties?”

And lastly, to compensate for my mourning of the chocolate cake recipe, I’m creating my own recipes and traditions that I will eventually pass down to my children one day. And knowing that makes me content.

(I just hope they like tofu stir-fry as much as I liked Mom’s chocolate cake.)

Calling All Pain Killers

Have you heard of a port?

I’m not talking about the kind where ships dock, and I’m not talking about the Tawney fortified type (best if aged 10 years) either.

I’m talking about the kind that’s implanted just beneath the skin of a patient – typically on the chest or in the stomach – which connects to a vein so that drugs can be injected and blood samples can be drawn.

(Bet you wish I were talking about one of the former. Yeah, me too.)

Anyway, this medical port is supposedly an innovation in intravenous drug delivery – giving providers more easy access while reducing the pain of repeatedly jabbing needles directly into a patient’s vein. Nevertheless, my mom’s acute anxiety started the moment she woke up on a Friday (her chemotherapy days), knowing the port would be accessed. She held her breath intensely and looked like she was about to take a bullet to the chest the moment before a nurse accessed the port with her instruments. Although I never witnessed the alternative, intravenous drug delivery with a medical port is no pain-free walk in the park.

In my first blog post, I said that being the patient sucks. You know what’s worse? PAIN. Pain really sucks. And given the pain from a hangover I’m suffering from today (the type of pain I’m most accustomed to), it seemed apropos to tackle Pain with a blog post. So here goes.

The most visceral reaction I had during my mom’s battle against pancreatic cancer was to her pain. It was around Thanksgiving in 2009 when the agonizingly sharp stomach pain started. We went through a long list of painkillers, however, nothing came close to dulling the pain. Even the most potent narcotics out there – the ones under lock and key at the pharmacy that only the pharmacist can handle – offered no relief.

The only thing almost as excruciatingly unbearable as her pain was having to witness it. I have never ached so strongly for a magical power before. I longed for the ability to reach inside her, turn the pain off or at least take on some of the burden myself.

When she said through tears, during a particularly acute bout of pain, that she’d rather die than suffer like this, I completely understood and, as morbid as it sounds, started to wish for her death to come sooner rather than later to release her from the throws of Pain.

For the remaining 12 weeks of her life, I made her palliative care my personal mission. We visited pain specialists at various hospitals, went through several more lists of pain drugs and regimens, and I ultimately convinced her oncologist to approve the implantation of an intrathecal pain pump the size of a hockey puck in her abdomen. (We enjoyed several sports metaphors as a result.) Although it’s somewhat hard to know, I believe she died comfortably and pain-free for the most part.

I hope that the wonderful medical researchers out there searching for innovative cancer treatments and cures are also devoting time and attention to pain management. Because with the type of pain that patients like my mom endure, finding a pain remedy is like finding a needle in a haystack…in the middle of a tornado…with biting red ants climbing all over you…while you traverse a field of broken glass barefoot.

With that, I’ll close and wish you a pain-free day.

I’m going to pop a couple Advil to try and kick this hangover.

Top 5 Things NOT to Do the Day Your Parent is Diagnosed with Cancer

Number one is so important that I’m just going to dive right in.

1.  Do not Google your parent’s disease. Step away from that search engine; don’t even think about typing the letters W-e-b-M-D, and by all means, resist the urge to browse cancer-related forums or group chats. You really don’t know how hazardous this can be until you do it, but I promise you this: You won’t find any comfort in what you’ll encounter.

My father was a psychiatrist who spent a large part of his early career devoted to research. Here is what he used to say about statistics: “It doesn’t matter what the statistic is; all that matters is the side of the statistic you’re on.”  In other words, survival rates, percentages and other statistical data only go so far. Your parent is not a collection of patients. Your parent is one person. Focus on your sample size of one.

2.  Do not forget to wash your hands. That’s right. Wash ‘em. Lack of sleep isn’t the only thing that compromises the immune system. Stress, especially in large quantities, can weaken it. You’re going to be forced to deal with a lot of stress during the first week of diagnosis, and coming down with a cold or sinus infection will make things worse.

Because of the circumstances, you may find yourself in the hospital or doctor’s office with your parent more than usual, and these are the best places to pick up unwanted bugs. So, wash your hands and keep yourself healthy. Purell it up.

3.  Do not think about work. If you try to take on everything that you usually take on during a typical day as Lawyer, Student, Name Your Occupation, you will either go crazy or break down into a blubbering mess of tears before the day is over. If you can, give your mind and emotions the day to adjust to your new reality. This new reality will be a focal point for a while, and your brain needs to walk around it, sniff it, touch it and get used to it before figuring out where to place it in the jigsaw puzzle that is your frontal lobe.

4.  Do not be late paying your bills. In other words, don’t forget the small (but important) stuff. Some of these to-dos may happen to fall on diagnosis day, however, you will more likely face upcoming due dates throughout the following weeks. If your internal alarm clock goes off instinctually on every first of the month to pay bills, rent, etc., don’t be surprised if the alarm isn’t quite as reliable after your parent’s diagnosis. You may need to use a couple extra post-it notes or put a few more reminder alerts in your Outlook calendar. And if you accidentally miss a PG&E payment, try not to beat yourself up. You’re fragile right now, so go easy on yourself.

5.  Do not stay up all night. I’ll tell you what’s worse than your parent’s diagnosis: Your parent’s diagnosis when you’re sleep-deprived. Get some sleep. If you’re having trouble falling asleep, take Melatonin or read the most boring book you can get your hands on. I tried a Financial Accounting textbook once, and I was asleep before I finished the chapter’s executive summary.

One last thing: While it did not make the top five list above, please do not think you’re alone. Several people in your extended network have been faced with similar hardships. (Your network includes me whether or not we’ve met because you’re reading this blog and are therefore connected to me.)

Ok, I lied. One more final thing: Do not be a stranger. If your parent (or loved one) is diagnosed with cancer, and you feel an urge to talk to someone who has been in a similar spot, please call me. If you want more suggestions, some support, words of comfort, or simply the name of that Financial Accounting textbook, email me to set up a time to talk. I’m serious.

theinfinitygame@gmail.com – That’s me.

PS. A big thank you goes out to a friend who inspired this post — Because sometimes it’s just as important not to do something as it is to do something. She is currently dealing with a parent’s fight against cancer, and she emphasizes the importance of #1, do not Google your parent’s disease. So if my warning doesn’t dissuade you enough, take it from the both of us!

Top 5 Things To Do the Day Your Parent is Diagnosed with Cancer

A cancer cell is like a cockroach. It can survive anywhere; you’re always shocked where it turns up, and after you bring in the exterminator, you hold your breath, in constant fear that it will come back.

For years, we’ve listened to the medical community preach about the willful masterminds that are cancer cells. They elude poisonous drugs; they adapt to treacherous conditions quickly, and they multiply faster than you can say, “chemotherapy”.

In my opinion, the true shrewdness of the cancer cell is manifested not by the havoc it wrecks on a patient’s body but in its vengeful reach beyond the patient – to me. When my mom battled pancreatic cancer for 10 months, I didn’t have cancer, but cancer had me.

And for this very reason, I want to share the five most important things to do the day your parent (or any loved one for that matter) is diagnosed with cancer. I don’t claim to be a cancer expert, but I do claim to have experienced the secondary effects of it.

So, without further adieu, here are the top five things to do the day your parent is diagnosed with cancer:

1.   Call a best friend (or five). Maybe it’s a college roommate. A childhood buddy. A summer camp bff. But regardless of whether or not you consider yourself a private person when it comes to personal matters, I urge you to contact a friend for support. There’s something very powerful – almost as powerful as cancer’s unilateral decision to present itself – about hearing a friend say, “I will drop everything and fly cross-country to see you right now. Just tell me – What can I do?”

2.   Work your network. First, I’d like to thank business school for hammering home the importance of networking. This might seem like a crazy, over-achieving day one activity, and the truth is I do not insist upon it. I would, however, strongly recommend you work your network within the first week of diagnosis – especially for those cancers that are rare or difficult to treat. After the initial shock and panic of hearing my mom’s diagnosis, the most terrifying thing was figuring out what to do about it.

The doctor who originally diagnoses cancer is rarely an oncologist, and while he or she likely has recommendations, it’s up to you to find an oncologist, a first-rate chemotherapy or radiation treatment center and, believe it or not, the right mix of chemotherapy drugs. Can we say, OVERWHELMING?

Yes, yes we can. Because that’s exactly what it is.

The secret power of your network is that you never know who you know who knows the sister, brother, cousin, housekeeper (you get the idea) of a top-notch, cutting edge oncologist who can get you an appointment with one quick phone call favor. I know that was wordy and long-winded, but it was also completely necessary. I can’t emphasize the value of networking enough. It’s that important. That’s how I found Dr. Daniel Laheru at Johns Hopkins, and I don’t know what I would have done without him.

3.   Set a schedule for day two. You know the feeling when you wake up the morning after an enormously regretful hook-up? Or after total-ing your car? Or failing an important exam? Well, multiply that by 100, and that’s the dreadful feeling of waking up the morning after your mother has been diagnosed with cancer. How do you cope with the morning after? Establish a schedule. Wake up, breathe, play Words With Friends, eat a bagel, go for a run, take your mom to her favorite restaurant. It doesn’t matter what the schedule is; it simply matters that you have one. Something that’s reliable and keeps you grounded when you feel like screaming, “what the *&%$*@ am I supposed to do now?”

4.   Pour yourself a drink. After the harsh reality of the day, sometimes all you need is a little cloudiness. Plus, who doesn’t love a stiff drink after a tough day? And let’s be honest, you’ve had a pretty tough day.

5.   Bonus. Number 5 is a wild card. It’s the freestyle do-whatever-you-feel-like-doing step. Sing your heart out to Coldplay in the car; watch a rerun of your favorite Parks & Recreation episode; eat an obscenely large bag of sour patch kids. Hug your mom. Cry. Whatever you think will feel good (even it just brings temporary pleasure), go with it.

While I can’t protect you from bearing the ultimate brunt of the disease, I hope that the above enumerated list will help you dodge the sting of the shrapnel that comes on diagnosis day.

P.S. For the record, the above list is also applicable to regretful hook-ups, total-ing cars and failing important exams.

Ode to Arguments

There’s no fight quite like a mother-daughter fight. I’m not talking about the casual squabble over the appropriate length of a skirt or a reasonable highway driving speed. I’m talking about the temperature rising, hoarseness inducing, knockdown, drawn out battles exclusively characteristic of a clash between Mother and Daughter.

Fortunately, as most daughters can attest, the height of the argument bell curve occurs during the hormone-raging years of adolescence. Hearing that there’s no wiggle room in a curfew mandate or not receiving permission to attend “beach week” unchaperoned would send me into a tizzy of melodramatic fits as a teenager. The worst part? My mother’s cool, calm demeanor – which infuriated me even more at the time.

However, that was then. When I entered my twenties, our mother-daughter arguments changed tunes. The overemotional theatrics of my adolescent behavior subsided. My anger had the same intensity, but logic and reasoning guided my actions instead of hormones and the satisfying sound of the bedroom door slamming. (As a side note, we continued to squabble over the appropriate length of my skirts as I got older, and I imagine we still would if she were alive today.)

Here’s the surprising effect that these arguments have on me now: I miss them.

Arguing with a mother – perhaps a father too, I imagine, but I only have the one reference point – is different than getting angry with a friend, foe or significant other. Generally speaking, I hate conflict and confrontation with these groups. Some people are good about raising issues and vocalizing points of view with unemotional, short, declarative sentences. Historically, I have always preferred to vent to a confidant with the unfortunate side effect of  letting things fester and froth up into bigger problems.

Anyway, the thing about arguing with my mom was that there was never any anxiety before an argument. I never felt compelled to jot down notes before confronting her (like I’ve done before with friends and boyfriends), nor did I ever feel uncomfortable, foolish or shy afterward. I miss the spontaneity of our squabbles and the real-time hashing out of problems. I miss her gasps of exasperation. I miss how swiftly we could bounce back after an argument into a casual conversation about my upcoming weekend plans or a review of the most recent book she finished.  After the argument, there was never any awkwardness, discomfort or concern that the tenor of our relationship had changed. How could it? She was my mother.

I don’t think I’ll argue with anyone quite like I argued with my mother, and I’m sad about that. I miss her for lots of reasons, but today, I miss my mother: my irreplaceable opponent.

I suppose the reassuring thing is that if I should be lucky enough to have a daughter one day, I have it on good faith that she’ll remind me all too well of my mother-daughter fights of yesteryear….

And something tells me if this proves to be true, I’ll live to regret the day I said that I miss these arguments. Until then, I will look forward to eating my words.