This will be the final post

At 2:00am on October 2nd, 2016 Naomi Beth Sichler died peacefully at home surrounded by her family.

We were both always floored at the effect this little public notepad could have on others, and have been overwhelmed with the support we received over the years. We always wondered why people were so interested in the way we lived our lives together, when to us, we were just trying to enjoy each other.

I have so many thank you’s to deliver due to the expansive amount of help and love we have received, that I am bound to miss a few, but know that we could not have loved each other and lived so richly had it not been for the help of so many. Naomi always reminded me that people seemed to run towards us, not away, when they found out about her diagnosis. In this way we were lucky, unfortunately, this is not always the case.

First off, thank you to Skirball Hospice for providing some of the finest care imaginable during this time. Your professionalism and compassion instilled confidence and peace. The constant calls and texts from nurses not even on duty, shows how much you all truly care. Your presence during our time of need allowed, and even made possible, a beautiful end to Naomi’s journey with us.

Thank you Compassion & Choices for being such strong advocates for the terminally ill. Although Naomi chose not to take the aid-in-dying medication, the relief it brought her to know it was an option is something all terminally ill patients should be able to feel.

Thank you to our team at UCLA. Despite Naomi being a USC Trojan, she didn’t trust anyone else with her care. Dr. Nghiemphu, Nanette, Tom, and Cheryl, you all made us feel that you cared about us as people, not just patients.

Thank you to everyone who came out of the woodwork to show us support in the form of cards, flowers, clothes and blankets, rides to doctor’s appointments, food deliveries, and apartments to stay in for family members from out of town. This list is larger than the internet, but thank you all.

To my family – Thank you for accepting Naomi as a daughter and sister. She got unfathomable joy from knowing her family had doubled. Thank you for helping us enjoy the small moments in life through cards, books, and many other actions that let us know you were thinking of us. Thank you for instilling my sense of family, compassion, humility, and caring that helped me provide Naomi with strength when it was needed.

Thank you to Naomi’s family. Eleanor, John, and Tim my heart goes out to you. You were the fortunate ones who knew Naomi the longest. Thank you for raising and supporting the most authentic, strong, loving and thoughtful woman I ever met. Eleanor – Thank you from every inch of my soul for putting your life on hold on numerous occasions to help us maneuver our way through this disease. Thank you for your positivity. Thank you for supporting me as well over all these years. The expansiveness of your love knows no bounds. John – Thank you for being such a steady presence at all times. I know Naomi’s calmness in the face of adversity came from you. Tim – Thank you for your unflinching loyalty, friendship, and comfort to not only Naomi but to me. You and Naomi were always looking out for each other and shared a relationship that she treasured like none other. I am truly blessed to have you all in my life. Knowing that Naomi’s blood runs through you brings me much needed solace.

Thank you to our friends. Vast barely describes this list and the amount of thank you’s to include here so I’ll keep things general. Your words and actions have left me astonished, and floored as to how we could be so lucky to have such amazing people in our lives. Thank you all for helping us have a good life worth living. We are forever thankful for your generosity, loyalty, shoulders to cry on, hands to hold, firm hugs, smiles shared, heartbreaks comforted, and celebrations together. I have no doubt we will carry on Naomi’s legacy together.

Lastly, thank you Naomi, for pouring your soul into this blog and into our relationship. Your openness and authenticity shined through in all that you did. Thank you for getting the broom out and helping me sweep up the pieces of my shattered life. Thank you for taking a chance with me and milking every ounce of love out of our all-too-brief time together. Thank you for pushing me to be a better person; the best version of me. Thank you for being fearless and honest. You have made an irreversible impression on my being. Every step I take in this life will be made with you. I am left with a void the size of the universe in my heart, but I thank you for bringing such amazing people into my life to help me grow around that void. Thank you for bringing me way more than net-joy. I love you.

We are all Naomi’s brain,

Mike

Memorial Service Details

Anyone who has been impacted by Naomi’s journey is welcome to attend a memorial service celebrating her life.

Date: October 30, 2016

Time: 12-3pm

Location: Ahmenson Senior Center at Expo Park

Parking: There is limited free parking on S. Park Dr, but many available lot and metered spots on the streets surrounding the center (Bill Robertson Ln and Martin Luther King Jr. Blvd).

Donations: If you would like to send a gift or condolences, here are two organizations that provided us guidance and information that was paramount in our navigation of this disease.

Simms/Mann Center for Integrated Oncology

Cancer Support Community – Benjamin Center

This moment — this one right here

Thank you thank you thank you for the outpouring of love and support over the past few weeks. I am blown away by the number of people who have reached out to let us know they’ve been touched in some way by my blog/our story. It’s particularly meaningful to hear from friends, acquaintances, and even total strangers about the specific and personal ways in which witnessing and reading about our experiences has made a difference to them, whether it be vowing to spend more time with family, saying “f—it; let’s get that second dog,” seizing opportunities for adventure/travel, or simply being present and appreciating how special and valuable each moment with their loved ones is.

For a little while, I’d been struggling to understand why following my blog has been so impactful to so many people because, to me, it’s simply my unglamorous, messy, ordinary life. One comment in particular, though, helped me understand why so many people relate to our situation. Davida, my former boss’s wife, put into words very clearly how the blog has touched her. Her words capture so well what I hope my legacy (such as it is) will be: “You have helped me to appreciate the importance of this moment — this one right here,” she wrote, “as it unfolds and regardless of what it contains — by showing how it’s done and by writing about your process and your experiences with such delicate sensibility and brilliant specificity.” So thanks again to Davida and to many others for making me feel like the difficult work of being open and vulnerable throughout this experience has made a difference to you. Knowing that my cancer diagnosis brought Mike into my life makes the terrible parts of this worthwhile, and the knowledge that sharing my experiences honestly has had a positive impact on others is the icing on the cake. 

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Our friend Amanda made and hand-delivered this stunning flower arrangement. Thank you SO much, Amanda! Check out her lovely creations on Instagram @bloomthereitis.

Special thanks also to members of the Northeastern University Physical Therapy class of 2009. This wonderful group of Mike’s classmates reached out to ask if they could make a charitable contribution that would help other people experiencing a cancer diagnosis. They’ve generously raised $2,500, to be split between the Cancer Support Community-Benjamin Center and the Simms/Mann Center for Integrative Oncology, two organizations that have provided immeasurable help, resources and support for us over the past 6 years. In a particularly touching and meaningful gesture, John Tran, a member of this class, has also offered to contribute the funds needed to keep iamnaomisbrain.com up and running in perpetuity. We are deeply grateful.

We continue to fill our days with the little things: reading together, listening to records in our little sitting room, watching a few TV shows and movies, going on walks together and with friends and family. We’ve had quite a few appointments this week and last with members of my new hospice team and have basked in the company of and laughter with friends, after all the medical talk.

a chapter closed

Well, that’s another chapter closed. Last visit to my oncologist: check.  img_1913(Yes, I made sure to rep my alma mater for this final foray into enemy territory.)

We completed the POLST form, which instructs the paramedics not to resuscitate me should they happen to be called for any reason during this final stretch. I haven’t come this far down the path toward dying peacefully at home to end up with broken ribs and full of tubes in an ambulance/ER/ICU. I also completed the paperwork for the EOLOA, including a final visit alone with my oncologist, a requirement of the law that helps ensure patients are not being coerced into requesting the aid-in-dying prescription. Mike will be able to pick up the actual medication this week. It’s a huge relief to have that process completed, as it takes more effort to get out of the house each time.

We also bid a tearful goodbye to the nurse practitioner who has helped me navigate the nasty side effects of cancer treatment for all these years, and to my oncologist, who has patiently answered my endless questions and helped me grapple with some of the most difficult decisions of my life. I never felt rushed out of her clinic and that gift of time and attention is something I’ll be forever grateful for. We didn’t get everything right, and there are some things I’d personally do differently if I had it to do over again, but we each did our best. I know she cares about me and has always respected my autonomy as a patient and a human. In a world with no perfect answers or crystal balls, you can’t do much better than that.

This weekend, we got a bit of respite at our friends’ house in Pasadena. (Huge thanks to the Merendino/Williams family once again for their generous hospitality!)

Chelsea joined us up there for the weekend (and Lauren popped in for an afternoon), and we just hung out, relaxed, and soaked in the breathtaking views. We even got to watch the fireworks display after the  UCLA game at the Rose Bowl Saturday!

My most frequently asked question is how I am feeling. Answer: 

Physically, I’m tired and can feel my energy waning. My neck and shoulders are in pain and I’m having trouble getting comfortable/out of pain whether I’m awake or asleep. The nausea I’d been experiencing over the past couple of weeks seems to have abated somewhat, but my food aversion is still pretty strong.

Otherwise, I’m:

  • Relieved to be definitively done with treatment and the decision-making struggles that entails.
  • In mourning about all I’ll miss: Christmases by the fireplace, dinners with friends, camping trips, game nights, tailgates, weddings, birthdays, births. A lifetime of memories I won’t get to make.
  • Awed by the love Mike and I have shared over these years and heartbroken that it’s coming to an end. 
  • Filled with gratitude that I have a husband, family and friends who are doing all they can to make these final weeks as comfortable as possible for me. (Mike has stopped working for the time being, and we are soaking in these moments together, many of which include me dozing in bed and him reading quietly next to me, or softly recounting some of his favorite memories from our years together.)

life is pain, highness

Ugh. What a week. It turns out that tapering off steroids comes with more negative side effects than I’d realized and they’ve all been hitting hard. I’ve gone from feeling the best I had in a long time back to feeling pretty dang awful over the span of just a few weeks. Physically, we’re talking nausea, fatigue, diarrhea, etc. All the fun stuff those of us with cancer just love dealing with time and again. Also, my body’s cortisol levels are so out of whack from the long-term use of corticosteroids that my brain isn’t producing the hormones needed to regulate my emotions. So instead of being a fairly stable, rational human, I’m a weepy mess. Not great timing for a series of important conversations with members of my care team and family about next steps in my treatment and end-of-life planning.

On top of all that, my non-functioning left arm is hanging uselessly at my side, causing significant neck and shoulder pain. This has started to make any car ride longer than about 10 minutes (and, really, any position in or out of the car) pretty unbearable.

We are workshopping solutions to all these issues, including switching to a new steroid that will allow me to continue the taper slowly over the next several weeks, hopefully accompanied by a tapering of the side effects as well. In the meantime, I’ve decided to take a break from the Avastin and immunotherapy, to give my body a chance to stabilize. It’s unclear at this point whether I’ll choose to restart one or both of these therapies in the coming weeks. I’ve been saying for a long time now that my goal is to prioritize quality of life over quantity as I near the end, and I’m doing the best I can to put that stated goal into action. I hope I can get back to a place of better quality, but I also acknowledge that might not be possible at this stage. Without any drugs to hold the swelling and tumor progression at bay, I’m sure there’s a whole raft of other symptoms waiting for me just around the bend. Without a crystal ball, it’s impossible to know whether they’ll be easier or harder to live with than the ones I have now. My mom keeps reminding me to take one day at a time.

As usual, my support system has rallied around me this week. My lovely friends Jenn, Andrea, and Amy were here to drive me to appointments/just spend time with me. (Amy even brought her doggie, Romper, along for the drive yesterday. Yay for furry friends!) IMG_1990I’ve spent time on the phone with my parents and brother, as well, seeking their input as I’ve prepared to make decisions about next steps. And I’ve gained extremely valuable insights from my therapist, Tom, and from my primary care physician, whom I met with yesterday to complete the paperwork for the EOLOA. These two wonderful medical professionals — both of whom personify the word “caregiver” in its truest sense — gently reminded me this week that making the medical decisions that are best for me is not only consistent with the way I’ve handled my illness over the past six years, but is something I shouldn’t feel guilty about.

Which brings me to Mike. I truly don’t believe a more devoted, kind, loving, and patient husband exists. Seeing the heartache on his face as we talk about these difficult subjects and decisions makes me think I can endure anything for a little while longer rather than bring him pain. I have to continue to remind myself that I didn’t choose this disease, and regardless of the decisions I make over the next few weeks/months, the pain is coming sooner or later. For me (for both of us, really), it’s already arrived.

For a little gallows humor (and because I know many of you love The Princess Bride as much as I do):

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PS: Thank you so much to our dear family, friends, friends of friends (and even strangers!) who have sent gifts, notes, and messages. Your support buoys our spirits and helps us feel as though we’re not alone on this journey. It’s becoming more difficult to respond to each message/card individually, but please know they are received with gratitude and love. 

wonder, part III

My cousin Josh asked me to write a post answering the following question: If you had three pieces of advice to share from your journey, that you hope would profoundly affect generations to come, what would they be? This is a great question and a blog post on the topic is in the works. 

In fact, I’ve already done some thinking about what three pieces of advice I have to offer. (I make no claims regarding their potential effect on future generations, but simply share them as lessons from my own experiences.) The first — without which this wonder series would not be possible — is: Accept help from others with grace and gratitude. More to come on this topic and my long process of recognizing its power and incorporating it into my own life. For now, suffice it to say: accepting help is HARD. But as Pam (my mother-in-law) and I discussed recently, it’s SO worth overcoming the ego and fear that keep us saying “no, thanks” or “I’m ok.” The life enrichment for both parties is immeasurable. (Actually, it probably is measurable. I’ll try to do a bit of research for my longer post on this subject about the benefits conferred by giving and accepting help to/from others.)

In the meantime, I continue to be in a state of wonder at the outpouring of love and support we have received from all corners over the past couple of months. (Yes, in addition to June 9 marking the date of implementation of the End-of-Life Option Act, it officially marked two months since my terminal diagnosis.)

Among the wonderful souls who have gone above and beyond to help our family during this period is Susan*, a longtime patient of Mike’s. When she found out that we were in need of an apartment for our families to use as a home base during this difficult time in our lives, Susan immediately offered us use of the furnished guest unit on her own property. This incredibly generous arrangement has allowed my parents, Pam, Tim and others — but most especially my mom — to have comfortable, ample, private living space while helping provide care for me. Importantly, by providing alternative housing for our families, it has allowed Mike and me vital, precious time with friends and alone together each day and night. These moments alone, especially — cooking dinner, reading together and separately, talking, crying, laughing, giving foot rubs and back rubs, lying on the rug listening to records — are invaluable and we’ll never be able to repay Susan for giving us this beautiful gift. 

I’d also like to recognize (in no particular order; more to come in the next installment of this series!):

  • Kate and Holly for the wisdom and love they brought to the writing and editing process for my Modern Love essay. (Still no word from The New York Times. They say they respond to all submissions in four to eight weeks. It’s been six; I’m getting antsy!) And for Kate and Rob, who came straight to LA to spend an incredible, meaningful week with us. We were sad to see them go, but so, so grateful for the time together.
  • My brother, Tim, for giving up a trip to Italy to come to LA to spend time with me as soon as possible upon hearing the news; for tracking down the one chair in LA we wanted for our living room and for spending the Memorial Day holiday with us, providing help (along with Jen!) with meal prep, grocery shopping, cleaning and more. 
  • Sienna (and Chelsea) for their help setting up the CaringBridge site. And Sienna for always being among the first to reach out and offer help or companionship — and mean it!
  • Our neighbors Jenn and Rose and James, who have been there to support us in ways large and small. (Most especially Jenn and her husband Toru, who have become real friends, too!)
  • My hair stylist, Lindsey, who has not only provided haircuts (gratis) to my family and me but has shown a genuine interest in us and our well-being and has become a friend in the process. 
  • Lauren and Chris, who have been wonderful confidantes, willing to have the difficult conversations that not everyone can have and bringing thoughtfulness, care, joy (and often Tender Greens!) with each visit. To Chris: We love seeing how happy you make our dear friend, Lauren, and I feel lucky to have witnessed your relationship blossom over the past several months. 
  • My in-laws, Brian and Katrina, for helping make our new sitting room the cozy, inviting space it is and for their ongoing love and support. Love you guys!

 

*Name changed to protect patient confidentiality.

friends are like walls

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i’m pleased to report the successful completion of 10 rounds of chemotherapy.  this was the first round in a very long time i tackled without the assistance of the parentals.  i’ll admit that i was a little nervous going into it.  those long hours of feeling too drugged up to drive anywhere or do anything meaningful/productive can wear on you if you’re alone.  but i felt confident that i had enough friends scheduled to help out, bring me food and keep me company.  there were moments of missing my mom.  there were moments (as there always are during chemo, no matter who’s around) of feeling lonely and scared and sad.  and, of course, i felt the physical effects of the drug cocktail:  jittery, nauseous, exhausted, nauseous, wired, nauseous.  but overall, i felt calm and cared for and comfortable.

and i felt — and continue to feel — unbelievably fortunate and grateful to have the best friends a girl could ever hope for.  what the sign below says is true.  whether i’m physically by myself or in the company of another person, my friends have given me the amazing gift of knowing that you’re there. 

thank you for the texts, the emails, the facebook messages, the hugs, the late-night phone conversations.  thank you for letting me lean on you so very often.  but more than anything, thank you for just being there.  i love you all!