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

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):

15vlo5

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. 

Breathe in peace. Breathe out joy.

I hadn’t planned to write a blog post today. It seemed like an expenditure of too much energy, something I have so little of these days. But you wonderful people have been so kind and supportive all these years and months. The least I can do is keep you in the loop through this final stretch.

It’s been a really tough week for me. I’m not sure whether it’s the steroid dose reduction (I’m now at 0.5mg every other day and can finally start to see my own face looking back at me from the mirror!) or the many stairs I climbed in Lake Arrowhead last weekend plus all the time spent sitting in the car, but I’ve been in a lot of pain — in my legs, arm and shoulder, especially. 

The rapidity with which I lost function in my left arm also has had me thinking a lot about the next phase in the progression of this disease. I feel like I don’t really even need MRIs at this point to tell me what my body is already telling me, and yesterday’s scan confirmed what I already knew: My tumor is growing fast. Short of an unprecedented response to the immunotherapy, which I started yesterday, my time is waning. 

I’ve shed a lot of tears over the past week as I’ve worked to stem the rising tide of panic thinking about how intolerable life will become without the ability to dress myself, walk, or perform other basic functions.

Fortunately, yesterday brought a little relief in this regard. My oncologist told me that moving forward with the End of Life Option Act (EOLOA) is not incompatible with continuing with the immunotherapy treatment. It will be a number of weeks until we’re able to determine whether the treatment is working and worth any side effects I begin to experience. In the meantime, however, it gives me great peace of mind to know that if I begin to decline more rapidly and/or experience intolerable pain/other symptoms, I’ll have the option to avoid prolonged suffering (both my own and that of those closest to me).

Mike and I watched an episode of the Netflix show Grace and Frankie yesterday while I got my infusions. A friend of Grace and Frankie’s, who has terminal cancer, throws a big party to celebrate her wonderful friendships and time on this earth, just before ending her life on her own terms. Her joie de vivre in her final moments is just what I hope to achieve, regardless of how the end comes for me. I plan to adopt her manta, too: Breathe in peace. Breathe out joy.

How can you help it when there are views like this to enjoy?

(None of which is to say that there won’t be lots more tears, as well. This dying business is not for the faint of heart.)

post-MRI status update 6/29/16

Given the increased weakness in my left arm leading up to today’s MRI, Mike and I went into today’s appointment prepared to hear that my tumor is continuing to grow, which is indeed the case. It’s growing fairly slowly, but growing nonetheless. Inflammation seems to be pretty well under control at this point. 

We used today’s appointment to talk extensively about the risks and benefits of Avastin. The serious potential negative incidents such as stroke, brain bleed and gut bleed seem to be even more rare than we initially understood and are more common among older patients who are otherwise in much worse health than I am. That being said, there are intrinsic risks that simply cannot be avoided. Our conversation did assure both Mike and me that the Avastin is the best course of action at this time. It will allow me to taper off the steroids, further improving my quality of life in the coming months. 

We also spoke with the care team, including Dr. Nghiemphu and both my wonderful social workers, about the End-of-Life Option Act. Dr. Nghiemphu does not feel she can state with confidence that I have less than six months to live at this point (good news, right?!), so that process will have to be initiated further down the road. 

We are in very good spirits, and I’ll proceed with my first infusion of Avastin tomorrow at 11am. 

Thank you to Mike for being a stalwart source of love, support and laughter. You make everything better. And a big thanks to Ted for a great lunch and the ride today. I look forward to more time together tomorrow!

IMG_1494

Congratulations, Cheryl, on your retirement. You will be missed. I cannot thank you enough for your support and advocacy on my behalf over the past 5.5 years. You and Tom are simply the best!

challenges and opportunities

It’s been a bit of a tough week. Mike has been hit especially hard by the news of his grandma being placed on hospice care. Now 87, Grandma Marge has been growing more frail for a few years now. She relocated to South Carolina a couple years ago to be near Pam and Gary and has been unable to bounce back from a series of health issues/events, ranging from stroke to falls to increasingly severe memory problems. Her health has declined quite precipitously in recent weeks, and the family is now focused on ensuring her final days are peaceful and  comfortable. Mike and I have spent some time talking this week about some of his favorite memories of his grandmother. He describes her as the “quintessential grandma” — kind, loving, and a great baker! Our love and thoughts are with Pam and Gary and the rest of Mike’s family during this difficult time. 

Also filed under difficult news: As some of you know, the weakness in my left arm, as well as my overall level of fatigue, have been on the rise for a couple weeks now. We’ve been tweaking my steroid dose to get the symptoms under control. It’s sorta working, but the increase in steroids has, in turn, triggered a mild fungal infection, so we’re treating that, too, and it seems as though we’re reaching the end of the road with the steroids. Their reduced effectiveness and accumulating side effects (facial swelling, water retention, painfully dry, flaky skin, insatiable hunger, muscle atrophy, the list goes on…) have forced a conversation about what comes next. 

I had hoped to have all the pieces of the End-of-Life Option Act (EOLOA) in place prior to considering a switch to Avastin, given the (small: ~1%) chance of serious side effects (stroke, brain bleed, gut bleed, etc.) that could dramatically reduce my quality of life (assuming I remained cognitively intact, of course). However, it’s a several-week process, which requires me to jump through a whole series of important hoops, designed to protect me and ensure I’m not being coerced in any way. So, while we can start the ball rolling on that next week, it seems like we’re going to be making a concurrent switch to Avastin. In fact, my first infusion is scheduled for 11am on June 30, the day after my MRI. This will give us the night to weigh the MRI results and make a final decision before proceeding. 

The good news: If I don’t experience the rare, lethal side effects, I should actually start feeling (even) better once my steroid dose is fully tapered (about a week after the first Avastin infusion). Losing the bloating, fat, and extra water weight and continuing my hard work toward regaining some muscle mass are certainly enticing prospects!

More good news? We’re getting away for the weekend! We are headed to a cute little cottage in Topanga Canyon to continue the birthday celebrations and spend some quality M&N time. We are very much looking forward to the time in nature enjoying each other’s company and setting aside our worries as best as we can for the moment. 

Wishing everyone a moment (or many more!) of joy this weekend, especially Ryan and Shannie, whose wedding celebrations we’re so sad to be missing.

And sharing a little photographic evidence of our own joy last weekend, when a host of amazing friends threw an epic picnic to celebrate our birthdays at an outdoor movie (Indiana Jones and the Last Crusade). What a fun night. Thank you to everyone who came out, and an especially big thanks to our party planners, early gatherers, balloon and cupcake bringers, and chauffeurs!

the freedom to choose

Guest post by Mike Scott

June 9th has arrived. June 9th, 2016, a seemingly unimportant day, unless it’s your birthday — or you are living with a terminal illness in California. Although my wife and I are celebrating our birthdays together this month (hers was in April and she felt too poorly to celebrate so we’re holding a joint party for my June 20 birthday) it is the latter that makes this day so significant for us. Today is the day my wife gained a drop of freedom back in a life that has taken oceans of autonomy and hopes away from her.

The End of Life Option Act went into effect in California today and has given 12% of this country’s terminally ill patients the ability to make a choice in how their life will play out. A choice that Naomi would not have thought she would have to think about even 10 years ago. A choice that allows her the ability to control the end of her story if she chooses to do so.

This past year, Naomi has had plenty of choices to make that would help determine what her life would look like.

  • She could choose the beginning or middle of June to start her brain radiation. 
  • She could chose Temodar or PCV for her chemotherapy. 
  • She could chose to continue or stop a benzodiazepine that was causing her seizures despite having withdrawal symptoms.
  • And she could choose between unproven immunotherapy, chemotherapy after being decimated by 5 months of it already, or palliative care after being given a terminal diagnosis. 

These don’t seem to line up with the normal choices anyone living a normal life cycle should ever have to make, never mind a 33-year-old. Normal choices like which movie we should go to? Choices like where to meet friends out for dinner. Choices like should we ride our bikes or walk there? These choices were stripped away by a disease that could affect you, your neighbor, or a loved one. It has taken away choice in matters like driving, walking significant distances, working, footwear, traveling, laughing, crying, and independence.

So I am grateful for all of those people and organizations like Compassion & Choices that bound together to bring one very important choice to those with a terminal illness in our state. The choice is not how you want to die. The choice is how you want to live the rest of your life.