Thursday, October 16, 2014

Lordy- Loo!

Dear Friends & Family,

After my last post, a number of you wrote asking how could I continue to be relentlessly positive in the face of challenging news, intermittent discomfort & the sheer amount of it all. First off, know that I have the urge to write when I feel good. When I feel badly, like many people, I want to crawl into bed, curl up in a ball and pull the quilt over my head!

Got me thinking. I will share with you some views from the underbelly, not so you feel bad for me, but so you can see better the range of this experience. Last time round, I felt a bit defeated by fasting, seemed like a bit of mean culminating in worse mean with the attempted needle stabs into my veins. My erstwhile uber-competent nurse, who I trust like a bodyguard, kept hitting valves in my otherwise full and pumping veins; it took her 3 attempts to get my IV right. I kept my spirits up--just kept saying to myself and increasingly aloud, "Well it HURTS, but I'm not SUFFERING, I know the difference! I might have yelled that out Southern Baptist style, but reined in my enthusiasm, didn't want to scare the other kind people I share that infusion room with. We had a good laugh, but when the nurse walked away, I burst into tears. It's like that sometimes. My goodness, I would hate that job--having to hurt people to help them, no wonder I got into homeopathy, for God's sake, the medicine tastes like candy!
It somehow reminded me of my birthing stories, I always wound up, during the intense moments in those little back bedrooms of our homes where our kids were born, yelling through gritted teeth, “JESUS FUCKING CHRIST YOU HAVE TO BE KIDDING ME... LORDY-LOO!!!!” And Paul would murmur to the midwife or to no one in particular, why is my New York Jewish wife praying to Jesus with a full-on a southern accent!?

Section II of the downer report:
As part of my drug offerings I am given “pre-meds,” via the IV. First in is an anti-nausea potion, fair enough, followed by what is essentially 100 milligrams of prednisone. The latter is given to prevent allergic reaction to the chemotherapy, but it was found to also potentiate the efficacy of these life-giving elixirs. Don’t know how many of you have ever taken prednisone but this sudden ramp up also helps prevent nausea, offers a huge jolt of energy, jerks around your sleep & messes with your head. A taper is not offered. 
So, day one and two have me doing all sorts of things like cleaning the refrigerator, washing walls, scrubbing grout, little house jobs, catching up with bills and filing all those chores that tend to slide to the bottom of the to-do list seem just easy as pie. But the drug wears off in a jiffy and at least in my case, that going a hundred miles an hour ends with me slamming head first into a thick brick wall of depression right around day 3. It’s a deep hole of depression, entirely unknown and unfamiliar territory for me, all consuming and sickening. Even though I know it’s from the drug. Even though I know it will end. Even though I know it’s not me, I would say this is the worst part of chemo. Eating helps, exercise helps, positive self-talk helps and nothing helps. I just say to Paul in a very small voice, “Can’t find my happy place.” Now that I’ve gone through this 8 times, I am better at handling it, it’s relatively short-lived and my ND helpers have given me useful advice; I also know it will help me be a better doctor to the many, many patients I see for whom depression is part of their story. 
On a lighter note, I had my first blood transfusion yesterday. I thought it was well-timed with impending Halloween and all. My red count has slipped precipitately low, not uncommon with these medicines; I was not all that tired really, but a few nights ago after a particularly exuberant hustle with my dance teacher, which sometimes might make me say, “Oh, my God, that dance took my breath away—meaning in an awesome dance, nice connection kind of way, I found myself so literally out of breath—the OTHER kind of taking one’s breath away, I realized I must have become severely anemic. My aorta was throbbing and I had to sit down, something I never do when I am out dancing. So, I was glad to be able to receive a lovely dark red unit of blood, while lying with my feet up and watching some low brow TV and eating a hospital burger on a gluten free bun. I had quiet afternoon by myself, they let the good stuff drip in slowly. I had views of the little Zen Garden, recall my spa experience! Of course the nurse who checked me in to that floor for my bloodthirsty adventure is someone I have danced with often, never knew he was a nurse. That juxtaposition of a dance partner, checking my vitals and my IV connection, like it was life or death for me to get back on the dance floor, gave me a good laugh. 
I am now 4 infusions down, 8 to go, after the next set will be at the half way mark. I see January 5th my clear finish line. Thank you to everyone who did a fast or a cleanse with me these last months, that shores me right up to know you would do that with me. I am thinking about NOT fasting this next time through, we have a Two Year NESH class beginning in Boston and I want to be part of the whole experience with this group of new people. And maybe take out our own Boston crew for a nice dinner on the town. Here we are a few weeks back at SOWA- I WAS fasting & missed out on the FOOD TRUCK experience! That's Felicia with us; we're just missing Jonah, who will hopefully be here soon enough for Thanksgiving! We all have so much to be thankful for.
Boston on a Sunday afternoon zipping around town!
Love & light,
AMY 

Tuesday, September 23, 2014

Book of Life

Dear all,

Two infusions down, 10 to go. Making my progress, slow & steady. AND enjoying this spectacular fall, walking in the neighborhood.


I wanted to share this HUFF PO piece published today. Please post to FB or tweet if you do those kinds of things; I would like to spread this word. http://www.huffingtonpost.com/amy-rothenberg-nd/brca-test-and-retest_b_5853156.html
As we are about to step into the Jewish High Holidays, I will share an image I love from the liturgy: that we all be written into the book of life for a healthy and peaceful new year!

With love & light,
AMY


Tuesday, September 16, 2014

Sparkly Gal


Dear friends,

When I have to go to chemo in the morning, I rise early to psych myself up. I stick to my morning routines at the house and take myself for a long walk. Today, a nip of fall in the air, I zipped up a jacket and tied up hiking boots and made my way down Middle Street. I turned left and walked east, face tipped to the warming sun, along the little lane that leads to the beaver pond. 

The rickety chairs set alongside the water’s edge were dripping with dew, but I sat down anyway to meditate a bit and take it all in. The morning sun bounced off the water golden & clear; the misty steam rose in billows from the deep green and black of the pond’s surface, mysterious and graceful like swirling clouds moving free. Thousands of spider webs connecting branches to tansy flowers and long grasses to cattails were backlit, water droplets clinging to their silvery threads. 

A spider web might provide one of the best metaphorical images around! The strength and resiliency of all those webs, usually not visible, now with their beauty and purpose exposed, called to mind so many things: the interconnectedness of life, the intricacy that goes into so much of what we do, the bravery it requires to both love & create and hopefully the rewards of consistent & hard work. Mostly today, sitting there, I was filled with the power of serenity.

The drugs I had today, Carboplatin and Gemzar, went in without a hitch; I can proudly say I no longer get bent out of shape when there are small inconveniences, discomfort or pain. I suppose I have reframed cancer care into the great teacher on the practice of equanimity. So, it’s one infusion down, eleven to go. I immediately renamed the second medication Gem Star, so I can think of myself as one sparkly gal with connections to the galaxies. This way I can stay bright and aligned and continue to be relevant and compelling to my astronomy-loving husband!

I can also visualize myself as part of a twinkling constellation of family & friends that have made this year tolerable and not without its silver linings. I continue to learn from the generosity of spirit, time, intentionality and material offerings from so many of you-- and there I thought I had that skill-set down! Thank you for keeping me in your thoughts, prayers and positive energy; I feel it all and drink it in right alongside my chemo-elixir, knowing how lucky I am.

Love & light,

AMY

Sunday, September 7, 2014

Fast Friends

Dear Friends,

So many people replied with the affirmative to the in-jest line of my last email, when I wrote about my upcoming return to chemo-land: I will be doing the whole fasting regimen again (can’t wait, anyone want to join me?!)
Got me thinking.
Mt Pollux late summer
Part of what feels bad about a cancer diagnosis is that you can get to feeling isolated. And although I can’t say I actually missed too much this last year, I did have to narrow my plan-making and social world to accommodate appointments and procedures. And let’s face it, food is the great social connector. So during fasting, at least for me, it’s a very real manifestation of self–imposed isolation, even when fasting for a higher purpose. The higher purpose here is to weaken any cancer cells that might be trying to set up shop, so that ensuing chemotherapy is that much more effective. Turns out, a welcome benefit of fasting is to severely limit side effects of the chemo, so a win-win situation.

Another thing I hate about this whole diagnosis is the seemingly endless need for self-centeredness, which is neither my general nor preferred posture. I am a giver and doer and an outgoing, face-the-world kind of person. If I knew my fasting, just among my circle of friends, had some kind of  broader impact, something more lofty than just helping my personal health outcome, it would help me immeasurably and would help me feel more connected! My friend DH wants me to call this the ChemoNationFastingTour! HA!

That said, my 500 calorie for 4 days routine is a bit severe & I think for most, would be difficult to sustain while working and doing life. So I had an idea: I’m a naturopathic doctor, I LOVE to take patients through seasonal cleanses, something most people can do without too much planning or stress, which does not deeply restrict calories and which offers some pretty quick health benefits. So, if you’d like to join this virtual party, howzabout a Fall Cleanse? If you’re game, you can do one day, two days or three.  Okay, if you do four days I would start to think you have an eating disorder! And of course just do it once, not 6 times like me. I need to retain SOME bragging rights here folks.

If you want to fast/cleanse with me, you can tell me what it’s like for you. You can cheerlead. You can glow among coworkers. You can lose a few pounds! Heck, you can take the money you would have spent on your usual food intake and donate to the charity of your choice. Here are things a fast/cleanse will not do: permanently shift your BMI, bring back hair for male pattern baldness, provide effective birth control or get your windows clean!

If you’d like to take up a cleanse, see the attached handout for the why & how, food shopping list included. Here are the dates of my fall fasts starting right up next week. I do not recommend doing a fast/cleanse once the cold sets in, wrong time for it for it. I will carry on through the January 5th, mercifully the last infusion, but you shouldn’t go on into the cold.

First round of fasting: Friday, Sept 12 through Monday September 15th.
Second time if dates work better for you: Friday Oct 3rd-October 6th. This is serendipitous, coincides with Yom Kippur. If you tend to fast that day anyway, you’ll have a nice jump start!
Third round: October 24th-27th
I will sign off here with a surge of energy to create this little offering; you know me, always love a project!

With love & light,
AMY
Here's the link to the Fall Cleanse info:
https://drive.google.com/file/d/0ByMZa1O2AxMZLU1Rdmt3cldaMmM/edit?usp=shari

Wednesday, August 27, 2014

Lushy Time of Year


Our neighborhood lotus pond is in full regalia with its platter-sized iridescent leaves waving and balancing on slender stalks, the prayerful and buttery pink flowers dancing in their midst. I always think about how mucky and ominous the pool looks in spring, and appreciate the transformation from something not very pretty to something "half wild & wholly tame" (with apologies to Kipling), something anticipated and awesome.

buttery pink flowers dancing in their midst
I can say the same thing about the growth around my ovaries. Ominous when determined to show cancer, but the awesome news we were hoping for arrived today, my pathology report came back
Stage 1. This is fabulous news in so many ways and entirely rare in the world of ovarian cancer.

And here the back story unfolds. Due to strong family history of breast cancer, I decided in 2007 to test for the BRCA gene. My results were negative. I breathed a small sigh of relief and kept up my state of the art detection approaches and uber-healthy lifestyle. With the breast cancer diagnosis in January, I was asked to get tested. I quickly reported my previous-not-that-long-ago negative finding and was told much more is known now; I should retest. Lo and behold I do carry the gene for BRCA.

All I can say is PROFOUNDLY BAD TIMING ON MY PART. I was being as proactive as I could be. Had I tested positive in ’07, I would have had prophylactic removal of my breasts and ovaries.  And how frustrating that one of the largest cancer research centers in the world would not be scouring its database and harnessing digital technology to alert patients who tested negative in the late 1990s and up through the 2000s, to RETEST. I have been in touch with my team there, you betcha, and will educate & write more on this topic going forward.

Not one to dwell on the frustrating side of life, I went to work on what else could I do to help prevent further issue. Which is why I was in a bit of a rush to have my ovaries out. And a good thing I advocated for myself and pushed this along. Most of my docs thought waiting until late fall would be ideal, give myself a chance to catch my breath from the onslaught that defines conventional cancer care. So the surgery I had last week, which was supposed to be entirely preventive, did not turn out that way, but to find ovarian cancer early is huge. Stage one is excellent. In some ways that breast cancer may well have saved my life.

So, what do you do when you are supposed to be recuperating from TAH/BSO (that's medicalese for total abdominal hysterectomy-bilateral salpingo-oophorectomy, or simply put: removal of the precious uterus, fallopian tubes and ovaries!) while simultaneously staring down the barrel at 6 rounds of chemo-yum yum? 

Here's my Top Ten List:

1. Clean the bathroom cupboards! Of course!
2. Work with patients a few hours at a pop, in person or by Skype, offers both deep satisfaction and helpful distraction. Keep on sharpening this mind.
3. Rework the yoga postures so my sutures don’t burst.
4. Create kick ass Powerpoints (a contradiction in terms), while lying on the couch, for a number of lectures I am to give this fall. 
5. Experiment with eyeliner (verdict: makeup makes me look like a tramp.)
6. Weed the flower boxes and commence the (annual) lament on the state of the fall garden.
7. Take slow walks by myself or with whoever will have me, build my endurance and speed right back up.
8. Listen to books on tape while daydreaming as I force myself to rest up (currently: Major Pettigrew’s Last Stand, a terrific read, even-keeled and lovely.) while lying in my chaise lounge in the shade.
9. Slip into my art room and send out birthday greetings, wedding wishes, and the ever increasing pile of condolences cards.
10. Stare at my basket of scarves and have the stunning realization that this fall I will be starring in a new show: The Reluctant Return of the Babushke Babe!
I will write again in a week or so, in response to all the replies I got about wanting to fast with me during my chemo-nation tour this fall. You guys rock! Know that I feel 100% myself, spirits high, happy at home, enjoying my family, my friends, my work and my ultimate good fortune this lushy time of year. 

Love & light,
AMY

Sunday, August 17, 2014

Tough Cookie


Well, I have good news and bad news.

The good news is I am recuperating in my beautiful sun-filled home with doting Paul and Sophie nearby. Misha was at Mass General & we were in touch with Jonah, who is tethered to Chicago basketball. A finer family I could not find.  Again, no painkillers for me: they kept saying at the hospital, my, you must have a high tolerance for pain, but truth be told, I did not experience pain,  probably due to that secret homeopathic magic: Arnica  (and then for you homeopathy aficionados, Miss Bossy Pants over here took Nux vomica for the trapped air left in the abdominal cavity from the laparoscopic procedure. Worked like a charm!)

The bad news is the there was cancer on one of my ovaries. This is a bit of shocker as we had all visualized this surgical foray as the endpoint of this cancer tour. It was caught early and my spunky, red-cowboy-boots-wearing-surgeon, says it’s likely no cancer was left behind. But it does mean I win a free return trip, all expenses paid, to that bummer of a place, chemo-land, to begin mid September as a precaution…. which makes good sense to me. I have faith I will fair as well a second time through as I did earlier this year. I will be doing the whole fasting regimen again (can’t wait, anyone want to join me?!) and in these coming weeks will have to sort out all the many work, social, & travel plans we made for our now, not-so-celebratory autumn. Paradoxically, the main feeling I have, is feeling badly about disappointing or burdening people. So, I’m sorry!

Your ongoing love, support & humor really does help me. And I am always open to your prayers that I will tolerate well the treatments ahead with this strong body, upbeat nature, and my shiny spirit. Throw Paul & the kids in those +++ thoughts, too; I know it is hard on them to worry about me. Like everyone, I really need to get along with all the work I have set out to do, dreams to accomplish, family to cherish & love to share. But I have also learned how to be in the moment and focus on healing.  I’m a tough cookie as you know by now; I feel peaceful and powerful even with this news. As Jonah reminded me late last night: Ma, no problem so big, we can’t solve.
Love & light,
AMY


Friday, August 15, 2014

Flexibility & grace


Rechem is the Hebrew word for womb and from it comes the essential word rachmanus, or compassion. As I contemplate having a hysterectomy this morning, I am not thinking about losing even an iota of my own ability for compassion.  Each challenge feels like an opportunity for getting stronger and better and for leaning on the people and the habits of mind I am blessed enough to know. SO! No loss of compassion here J.
There is an element of stepping into the unknown, no matter how much I know about this procedure. Here’s to stepping in with confidence and faith.

Stepping out near Lake Michigan last week. Just like the ocean and very calm this day
What an amazing organ I am about to let go of, this peach of a womb, soft and warm, that has lived inside me since I was inside my own mother. It has graced me with blessing beyond belief, three healthy, robust children who came rushing out into the world, eyes open and spirits ready to fly. That growing with child and shrinking again, growing with child and shrinking again always impressed me. Not too many parts of us can expand and contract like that and do it without much complaint. That was and continues to be the exact physiologic metaphor for the flexibility and grace motherhood demands.

I like to think of myself as creative, in the art room, the kitchen, our clinic, all over. But surely my greatest creation is my kids who leap beyond me in that department and spread so many good ideas and so much beauty and goodness in the world. I am thankful I was able to have and raise a family. Now on the morning of this procedure, it seems even more poignant to me that though love with Paul brought our kids into being and intertwining genes left clear and specific growing instructions, it was in and through the womb each had their start and began growing into the people they are.

I dragged my feet after Jonah was born, through my 30s and I am embarrassed to say, through my 40s, too. I could never say for certain and greedy as it sounds, that I did not want another child. So now, at this auspicious age of 54, (I say auspicious as in Hebrew, when you take the word for life (chai) and give its numeric equivalent, it adds up to 18, so 54 is considered triple chai,) I can finally say, OKAY! I’m not giving birth to any more children! Time to shift my posture toward grandchildren (you reading this Sophie, Misha, Jonah!!?) HA!!

My friend ZP wrote: “It took me forever to let go of that uterus, when I finally resolved my attachment I visualized it as this lovely angel with the flowing fimbria wings that I was releasing after its glorious service in providing a nest for my 3 children to develop in.”

I feel that. I feel the self-compassion I know I need for healing  and I feel your compassion and love for me too. May we each go from strength to strength, be fortified by the challenges we face and know that in love and community healing and resilience happen.

With love & light,

AMY