Tell Me What You Need

“Tell me what you need.”

Many people generously reached out after my diagnosis with this sentiment, and to be honest, I did not have an answer.

My standard line: “I don’t know yet. I’ve never had cancer before.”

And I absolutely did not mean that to be trite or rude; I simply think cancer is such an Earth shattering situation that you can’t know what you need until you are in the thick of it.

In no particular order, things that have been particularly helpful include:

  • Food. It is well known that I hate all domestic chores, including cooking, and two separate families prepared and brought over meals for us. Both were absolutely delicious. If left to my own devices, I would have probably had cereal for every meal, so this was a real step up.
  • Magazines.
  • A list of shows on streaming TV that I might like. I blew through everything on our DVR over the weekend and with time on my hands, I am open to a Netflix binge. A few friends sent ideas.
  • Book recommendations. I also received an Amazon gift card to buy more books from coworkers, and reading has been a great escape.
  • A fresh robe and slippers. There was a zero percent chance that I was not taking fancy slippers to the hospital with me.
  • A basket of luxuries. Ok, this sounds vague, but the people I work with gave me a large crate (also nice in and of itself) filled with things like lip balm, mints, hand lotion, fuzzy socks, colorful pens and a beautiful journal, plus a card signed with heartwarming messages.
  • Flowers. I have not left our house in five days and it is freezing outside. Flowers are a ray of sunshine.
  • A soft faux fur throw. This is seeing a lot of use!
  • Designer shoes. Oh, wow, these are so over the top fabulous. This is a wildly generous gift from a friend who knew that this would cheer me right up.
  • Prayers. Many people of various faiths have said that they are praying for me. I am humbled by this and covet the good thoughts going out into the Universe.

A few things that are specifically helpful after a mastectomy:

  • Pajamas that button up the front. Following surgery you cannot lift your arms above your head for a few weeks, so a front-opening top is necessary.
  • Mastectomy garments with drain pockets. Here is an example. I have already complained about these from a style standpoint, but they are really a requirement for this particular surgery. Most patients could use both camisoles and hoodies. I was fortunate enough to get both from generous friends. I have been wearing them every day.
  • Wedge pillow. I ordered this from Amazon. I received a lot of advice from post-mastectomy patients that side sleeping is out of the question and it is helpful to sleep on your back at an incline. Many post-op patients sleep in a recliner or adjustable bed. I have neither and decided to order this pillow. It has really helped me sleep. The one night I did not use it I woke up in a lot of pain and could not even move enough to get out of bed.
  • A ride. Or rides. There are several post-op appointments I need to attend and driving my Jeep Wrangler with its stick shift is not in the cards at the moment. A few people have offered to give me rides and I plan to take them up on the offer.
  • Babysitting. My daughter got invited to a sleepover and my nephew took my son skiing one day. They are affected by my diagnosis, too, and having something fun to distract them was a gift.
  • A blowout. The no-lifting-your-arms-above-your-head restriction also applies to hair washing. My stylist offered to wash and style my hair. Also helpful: dry shampoo.
  • A water bottle with a long re-usable straw. My T-Rex arms make it difficult to reach for a drink. Having a water bottle nearby that is easy to drink from is key. The one I am using most was a work freebie and has a wide silicone straw.

And finally: Acknowledging the elephant in the room with simple messages like “I’m sorry. Thinking of you” have also been sustaining me. A cancer diagnosis is a time of reckoning. People from all parts of my life have reached out and I know I am lucky to have this support. I am also glad to be alive in the time of texting; I would not relish repeating the same story over and over via telephone but being able to receive and respond to texts on my own time/terms has been wonderful.

Thank you to everyone for your love and support.

Cancer: How Not to Say the Wrong Thing

^^^^ Me, in a slightly happier time.

I can’t take credit for this article. Someone else wrote it several years ago and a different person shared it with me, but it remains spot on.

“Ring theory” starts with the afflicted person in the center and then widens the base with each concentric circle. The idea is to comfort inward and complain outward.

Read it here.

A quote from the article:

“Remember, you can say whatever you want if you just wait until you’re talking to someone in a larger ring than yours.

And don’t worry. You’ll get your turn in the center ring. You can count on that.”

Cancer: How Did I Get Here?

Ok, I know this is not my best look.

Later I found out that I had a substantial dreadlock in the back of my head, adding insult to injury for the above photo.

I also took a moment to toss this on the way home from the hospital:

But let’s back up a bit.

December 10, 2018: Routine screening mammogram = Read as normal

December 18, 2019: Routine screening mammogram = Read as abnormal

The picture above was taken at Christmas 2019, when I knew the mammogram report wasn’t normal but I didn’t yet know why. I got a call a few days before Christmas that the radiologist needed to compare the recent images to old ones, then a call on December 26th that I would need to come in for more images and possibly a biopsy.

With the holidays in full swing, I had to wait until January 2nd. I would have gone the same day if I could have.

I returned to the radiology imaging center and for the first time, I learned that there were two areas of concern, one on the right and one on the left.

The technicians pointed out what they were observing. The left side showed a scattering of what looked like seven grains of salt – tiny calcifications – on an otherwise dark background.

The right was different. I could see that there was a larger area and it was right up against my chest wall. This scared me, both in size and location. It looked like it would be difficult to access and seemed like it could easily spread into the underlying muscle.

After about 45 minutes of additional images, I was advised that I would be getting an ultrasound of the worrisome area on the right.

The ultrasound technician started the scan on the right and immediately I could see it was a cyst. It was smooth, like a jelly bean, and had clear fluid within it. Although breast imaging is not my specialty, nearly 20 years of performing OBGYN ultrasounds has made me capable of identifying a cyst. I knew this was benign and that was a relief.

The left side was another story.

The small area of calcifications – those seven grains of salt – could signal cancer and I was advised that I should get a biopsy. I was offered to have it done on the spot or to make an appointment and return.

I wanted the answers now.

The biopsy was a more complicated process than I expected. There were parts that reminded me of doing an OBGYN procedure called a D&C, one I have done hundreds of times, where a thin tube with suction attached takes pieces of tissue and collects them in a small filtered container. The tissue pieces have to be X-rayed to ensure the calcifications are present in the sample (parallel to floating products to my OBGYN friends), and if the sample seems sufficient, a pressure dressing is applied.

And then you wait.

The radiologist who did the biopsy – and she was very lovely and professional; when she walked into the room I knew I was in good hands – called me the next afternoon and asked if I’d already received the report.

I had not.

Her message was very simple: “I’m sorry to tell you that this is an invasive cancer.”

I had to write it down. I didn’t trust myself to remember.

And then I had to hold it together to see a few more patients before I could go home and totally fall apart.

The next two weeks had a flurry of appointments: MRI, pre-op exam, meeting with a breast surgeon, meeting with a plastic surgeon, getting fitted for mastectomy garments (truly awful, and I hope you never have to wear them), etc.

The wait to surgery was excruciating. I spent my time walking on the treadmill at the gym every day for up to three hours, just to escape my brain. Even though I was told it wasn’t necessary, I stopped drinking all alcohol because it seemed like I could go to a melancholy place if I had it on board. I’ve never taken medications like Valium or Ambien so I also didn’t have these crutches. I only mention this because in general, I think I have pretty good coping skills and my career involves having difficult conversations every day, and if I was mightily struggling during this time, I don’t know how others do it. I hope that comes out the right way.

Because it seemed like the cancer was now just on the left side, I was offered a few options: a lumpectomy on the left PLUS several weeks of radiation to the remaining breast and armpit area, a mastectomy on the left or a bilateral mastectomy.

This is the point where I am obliged to say that every patient is different and everyone should make the choice that is right for their situation, but I knew that for me, nothing short of the double mastectomy would suffice.

One reason for this decision was due to recurrence risk: I was advised that if I did anything short of a double mastectomy, I would enter into a complex screening algorithm for surveillance of recurrence or a new breast cancer, and that my risk was 2% per year, or 50% over 25 years.

Another thing that everyone was very clear about: the type of surgery selected does not reduce the risk of dying from breast cancer. A double mastectomy will reduce future recurrence risk but will not save your life over a less aggressive approach. This is scary.

But here’s the real reason I chose what I did: Regret management.

I talk to patients about Regret Management All. The. Time.

Regret management is making a decision now to (hopefully) mitigate future feelings of not doing enough when the opportunity was there. In my work, it usually translates to patients trying IVF or continuing with ongoing fertility treatments before the proverbial clock runs out.

For me, I am far from feeling like I am done living, and I felt like I needed to do everything I could right now in the most aggressive way possible.

Although it felt like a million miles away, the surgery date eventually came: February 13th. I had an all female physician team: breast surgeon, plastic surgeon and anesthesiologist. Of course I loved this.

My overnight hospital stay was uneventful and I was home by noon the following day. I was told things went well, but the final pathology report is still pending and I will learn the stage and what comes next in the upcoming weeks.

^^^^ Also not my best look but I am home.

Early recovery has been … ok … I guess. The pain is more robust than I thought. I tried to avoid taking any prescription pain meds but woke up at 4 AM on Saturday in so much pain that I could not move. I had to rethink my decision for Ibuprofen-only.

Recovering from a mastectomy also has many limitations: you cannot raise your arms above your head, no lifting greater than 15 pounds, and there are two drains – one on each side – that are sewn into place but have to be cautiously avoided for tugging/pulling and must be emptied several times a day. This also translates to not being able to get a coffee mug down from the cupboard, washing your hair, driving, etc. It is strange to be so restricted.

The drains will remain in my sides until the output is low for two days straight. This usually takes a few weeks and means I am wearing my terrible mastectomy garments (which have convenient pockets for holding the drains) until then. I criticize them for their lack of fashion but they are really necessary and I am grateful for a friend who sent me one to wear. Having said that, I never want to see these again when this is all said and done.

A final comment: I had a nice sob in the middle of the night the first time I caught a glimpse of my body, which seemed very disfigured. Intellectually, I know this is far from the final product (I got temporary expanders placed in the OR), but the reality sunk in when I looked into the mirror. I am grateful for my skilled and artistic plastic surgeon, who is also a friend, and I know everything will turn out ok in the end but we are not there yet. The breast surgeon is new to me but also extremely cool, someone I could see myself being friends with, and she did an excellent job, too. I really hope the three of us can laugh over drinks sometime. My debt to these skilled women is huge.

For now, I continue to recover, physically and emotionally. I appreciate everyone’s kind words, friendship and support.

Now I'm Obsessed with Jenni Kayne

Tick off another mark on the List of Inevitability: Now I am obsessed with Jenni Kayne.

If you’re not familiar, Jenni Kayne is a high-end lifestyle brand that epitomizes effortless, natural California style.

From home goods to clothing to accessories, everything is Just So.

Just So Chic.

Just So Perfect.

Just So Simple.

Just So Stylish.

And Just So Expensive.

Cost was a factor that kept me away from Jenni Kayne until now. While I loved the curated offerings, even I could not justify a t-shirt for $125 (although I really, really like it).

And then things changed, like they often do.

For one, I received this amazing gift – really the most spectacular gift from the most spectacular person, and I will never discuss it here – that had so many beautiful Jenni Kayne items, including a bag, a pair of shearling slippers, a candle, and a fancy match striker among other luxuries.

I was so enamored of This Gift, which was Just So tasteful and lovely, and essentially I wanted to move into Jenni Kayne Headquarters and live out the rest of my days there.

Also, speaking of end of days, I have been vacillating between Why Bother and YOLO modes recently, and YOLO won out when it came to Jenni Kayne.

As I type, I am happily awaiting the arrival of my first real Jenni Kayne order, complete with moccasins, sandals and an oversized cashmere sweater.

I still have my eye on a lot more, and Dreaming of a Montecito Lifestyle a la Jenni is rapidly becoming a full-time occupation.

As a Patient: Before and After

Loss of control. 

Loss of dignity.

Fear.

Uncertainty.

Vulnerability. 

Being a patient can be excruciating.

Today it is my turn. 

Last month I was diagnosed with breast cancer.

Today I will undergo a bilateral mastectomy and hopefully begin the reconstruction and healing process.

I am not even close to a point of accepting this in a way that I see it as a lesson or gift, but I am here to learn.

What I am also ready to experience as a patient:

Perspective. 

Patience.

Understanding.

Grace.

Hope. 

If you are the type, I would welcome your best thoughts and prayers. 

P.S. The picture above is one I deliberately took before I learned of my cancer diagnosis. I knew the biopsy results would arrive that day, and I wanted to capture a moment that would embody Before, because I knew if the results came back as malignant, everything would be divided into Before and After. This was Before. Now is After.

When You Are A Muppet

Friends, this is was *almost* too hilarious to be true.

For my recent 47th (!!!) birthday, Spouse commissioned a custom Muppet, and boy, did the artists NAIL IT.

Because Muppet Jani is designed to look like Actual Jani, she is sporting a diamond ring, necklace and earrings, hot pink scrubs with her name on them, and lip gloss.

Love it! But I still need a lot of practice with my puppeteering skills.

Holiday 2019

Yesterday I finished the last bit of holiday shopping and wrapping.

Well, at least until today.

Trixie and I hit the mall(s) early Sunday morning to avoid the worst of the crowds. It was *mostly* successful.

I heard on TV that Saturday had been dubbed “Panic Saturday” for holiday shoppers and was expected to ring up more retail sales than Black Friday or Cyber Monday. If that was Saturday, I’m not sure what moniker Sunday earned – perhaps “Last Chance Sunday?” “It’s-This-Or-Walgreen’s-Sunday?”

Hard to say.

In theory, I love Christmas.

I love the music.

I love the lights.

I love shopping and selecting the perfect gifts.

I love the holiday candy and treats.

I love the decor – as long as it’s not littering my house until March.

But the reality is that there are many things about the holidays I DO NOT love.

The endless wrapping.

The paper and tape that run out with four packages to go.

The post office. THE POST OFFICE!

Tripping over Amazon boxes.

Breaking down those Amazon boxes and deflating those awful plastic packing bubbles.

The puzzle-cramming operation that is fitting everything into our vehicle.

Driving back and forth to various family members’ homes, where we invariably are late and don’t stay long enough.

No one is happy in the end.

Of course it’s too late to follow through on my threat to spend Christmas in Hawaii, but a girl can dream, right?

What will happen:

  • Christmas will come and go. Too quickly.
  • There will be moments of joy.
  • There will not be enough sleep.
  • There will be laughter.
  • There will be at least one Can-You-Believe-That-Happened moment that we have to process later.
  • There will be one unbelievable gift that Everyone will be talking about.
  • We will make memories.
  • Someday I will wish I could reverse time and do it all again.
  • We will still struggle to fit everything in our vehicle for the trip home.

Happy Holidays, Friends.