Permission to Feel

As some of you know, I pitched a version of this essay to The New York Times’ Modern Love editors, but they unfortunately passed. I couldn’t think of a better day than today – Mike’s and my second (and final) wedding anniversary – to share this piece of my heart with you all. Not everyone is fortunate enough to find true love during their time on this earth. We are two of the lucky ones who did. And this is our story.

Permission to Feel

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.

Our union 

Yesterday, I asked a friend who has experienced the grief that accompanies the loss of a spouse if she had any pearls of wisdom to share, and she shared this beautiful poem with me. How fortunate I am to have experienced this type of union during my time on earth!

Our union is like this: You feel cold, so I reach for a blanket to cover our shivering feet. / A hunger comes into your body, so I run to my garden and start digging potatoes. / You asked for a few words of comfort and guidance, and I quickly kneel by your side offering you a whole book as a gift. / You ache with loneliness one night so much you weep, and I say here is a rope, tie it around me, I will be your companion for life. -Hafiz

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.)

I’m tired 

An exhaustion so complete it starts at my fingernails and oozes through my bone marrow. I’m tired. Sick and tired of the pain, the drugs, the nausea that sometimes hovers around the edges and sometimes surges insistently to the fore. I’m tired. A kind of tired I’ve never been before: like the fatigue from all these years of illness suddenly accumulated and animated into a steam roller, which is slowly flattening me. I’m tired. The kind of tired that doesn’t go away when I sleep, that gnaws at the edges of my consciousness — oppressive, unremitting. I’m tired. 

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.