Mommy, when I grow up, I will invent a vaccine that stops cancer before it grows.
Then I will invent a time machine and travel back in time. I’ll give you the vaccine,
and then you will never have had cancer.
- my five year old
Mommy, when I grow up, I will invent a vaccine that stops cancer before it grows.
Then I will invent a time machine and travel back in time. I’ll give you the vaccine,
and then you will never have had cancer.
- my five year old
As I process my whole cancer experience, I realize I cannot separate what I went through from the loss of my stepbrother two years prior to my own diagnosis. Sorting through my own trauma in order to heal, I have to go back before the date I was told, “You have cancer.”
This time of year is particularly painful for me, as it was the season of losing Jeremy. As the five year anniversary of his death approaches, I will post some of the updates I sent to friends and family at the time to share with you my firsthand accounts of that time.
We just got back from spending 10 days in the Bay Area, with the goal of being of as much service as possible to Jeremy and Beth [his wife]. I think we managed to help out, but it was a heartwrenching experience.
Not surprisingly, the situation with Jeremy was more complex once we got up close to it. The first thing that I needed to sort out was the state of the palliative care/hospice issue. As I indicated in my last post, I got our family on a plane as soon as I could manage after my dad called and told me that Jeremy was being moved to palliative care only, and that the doctors did not know how much time he had left. When I got there and talked to Jeremy, however, he was still talking about treatments and such, leaving me more than a little confused.
It turns out that he has two main doctors he is seeing right now, the pain guy and the oncologist. The pain guy is advocating for palliative care, and the oncologist is on the fence. So I contacted the marvelous advanced prostate cancer specialist here at the UW (Tia Higano) who has been consulting with me pro bono. I wrote her an email saying that I was kind of at a loss and did not have the expertise to judge what the right thing to do is in this situation. My dad and I spoke with her on the phone for over and hour, trying to summarize Jeremy’s treatment. She told us in a lot of detail the kinds of questions she would have about Jeremy’s treatment in making such a decision. The bottom line is, although the pain management has become the overwhelming issue, the door has not completely closed on treatment.
But the challenge of pain management cannot be underestimated. Jeremy is on high doses of pain medication, and still has a lot of what is called “breakthrough pain,” meaning that the pain breaks through the shield provided by the medication. Jer tells me that bone pain is particularly hard to manage. He was hospitalized during our visit to address breakthrough pain and swelling in his leg. Basically, his quality of life has greatly diminished, as his existence centers around pain management. Somebody has to be with him 24/7, supervising his medication, rubbing his hip and leg, reminding him to take care of basic things that he gets too distracted to remember. It is absolutely heartbreaking to see him suffering like this. On Tuesday, he has an appointment to get something called an intrathecal pump, which would administer meds directly into his spinal column, hopefully giving him quicker relief with less medication.
The miracle in all this is how, in the moments where his pain is under control, Jeremy manages to stay Jeremy. He has every right to be bitter and angry, but instead he wants to connect with the people around him in the most loving and authentic ways possible. [My husband] Adam spent a couple of nights at Jer & Beth’s, doing the overnight caretaking so Beth could get some sleep. (Jer wakes up frequently with pain issues throughout the night.) Adam had a chance to have some meaningful conversations during those wee small hours, and he expressed our awe at Jeremy’s determination to remain loving and resist bitterness. Jeremy basically said that if he doesn’t have a lot of time left, he doesn’t want to spend it being angry and pushing people away.
And, in fact, he seems to do the opposite. He and Beth have an amazing network of friends who come to help in every way they can. One day I came over, and he was getting a massage from a friend; another day, an at-home acupuncture treatment. This past Saturday, Beth actually had to turn away about 10 people who dropped by unannounced, because Jer was too tired to visit. Many of these friends told me about how much Jeremy has meant to them in their lives. He helped them climb mountains they were afraid they couldn’t conquer; he helped them contribute their talents to one of his many causes. He has inspired love and devotion in a lot of people.
But, outside of his family, no one is as devoted as his best friend, an activist with a kind of earn-enough-money-to-get-by lifestyle. He drove his vintage RV up from LA and is living behind Jer & Beth’s apartment building, helping Beth manage Jeremy’s care (which is more than a full time job), rotating on the night shifts, weighing in on medical decisions, making sure Beth doesn’t forget herself, and hauling Jer around San Francisco to his various appointments in the big RV. Driving and sitting are uncomfortable right now, so Jeremy gets to ride in style in the RV, where he can travel lying down, take naps between appointments, and have a snack. I told Jer’s friend that it absolutely tickles me to picture him going around SF (is there a more RV unfriendly city in the US?), finding parking, managing the hills, in that old RV. He replied dryly,”Well, the disabled parking permit helps.”
So what did I do in the face of all of this? I cooked, did laundry, walked the dog, watered plants, rubbed Jer’s sore hip, ran errands. I held Jer when he felt nauseous. I insisted that the nurses and technicians in the hospital sanitize their hands before treating Jer. I made calls to make sure that the CT scan taken at the hospital made it to Jer’s oncologist. I cooked some more, coming upon a granola recipe that Jer was particularly fond of, and given his nausea and weight loss, I was inspired to make multiple batches. It all seemed so insufficient, but it felt important to do something. I did manage to wrangle a little time to talk to Jer heart-to-heart. And I can tell you that my heart is broken.
Where things are at now: We’re hoping that the pump helps increase his quality of life. He is still receiving some chemo (in pill form) in the hopes that the cancer will respond (although he has not responded to any chemo so far). There are still 2 treatments he might try if he is strong enough: an intravenous radioactive isotope that Tia told me has had a “Lazurus effect” on some of her most dire cases and, if he is ever strong enough again, the bone marrow transplant. The isotope treatment would only be able to send his cancer into remission, but if it helped him gain strength and time, it might allow for the bone marrow transplant to take place, which could theoretically provide a cure. His oncologist is reluctant to use the isotope treatment because he has lost 2 patients from it who ended up with brain hemorrhaging. But Tia (who, I might add, is reviewing his oncologist’s promotion case) thinks it could be managed with vigilant monitoring of his platelet count.
At the same time, we all realize that these options are not great. Jer and Beth are going to start investigating hospice programs nearby. Jer is definitely walking a fine line right now, and we all recognize that another big setback could make even these remote possibilities of treatment recede into the background for good.
Thank you for all your loving and supportive messages. I know there isn’t a lot to say right now, but just knowing that you all care about us means the world right now.
I had my (almost) 3 year follow up appointment this past week.
The good news: NED.
The bad news: The life of an oncology patient is still often beneath my dignity.
I arrived to the clinic early. Since I am a patient in a teaching and research hospital, this often means I get to help the new residents practice their clinical skills. I am an educator, so I believe in the value of this kind of training.
It’s just sometimes hard to take when I have lost a night’s sleep worrying about impending lab results.
So the newbie doctor went through his clumsy interview. I confess I was not a patient patient as he (re-)explained many aspects of my treatment and the side effects I am experiencing.
I thought, Oh really? The shooting pain down my arm might be nerve damage and lymphedema?
Yeah. I know. I’ve been going to physical therapy twice a week.
He proposed Cymbalta for the nerve pain. I brusquely told him that I am a Side Effect Queen.
Drugs are seldom worth the trade off for me.
I could tell he wanted me to like him and put him at ease, but I didn’t really feel it was my job. He has to get used to us oncology folk.
Then my real doctor came in and did her thing. I was relieved. She too wanted to talk me into the Cymbalta for my nerve pain.
Did the Cymbalta people take you out to a nice dinner at the last ASCO meeting? I joked.
No, they don’t make enough money off of me.
She knows how to roll with me. This is why I love her. She continued, joining in on the snark.
This is a low dose. It’s like licking a f***ing pill. If you don’t like it stop. But it won’t hurt you to try and it could help.
I turned to Junior Doctor and said, Watch and learn from the master.
I agreed to try the Cymbalta.
As my doc continued her thing, I noticed that the young one had started fiddling on his iPhone.
I felt my heart rate go up. A half dozen call-outs flashed through my mind.
Really? That camera is pointed right at me dude. Are you live tweeting your clinics? What’s the hashtag?
I can tweet it too and let my followers weigh in. Oh are you Instagramming? I’m pretty sure that violates HIPAA.
When he left the room for the exam portion of the appointment, I said to my doc,
Dude was on his iPhone. Not cool. You need to say something about it.
I will, she assured me.
After the appointment, I blew off some steam by posting about the incident to my social media peeps.
They came up with some snappy comebacks too:
Dr. Douche, does the AppStore have anything to help me find a better oncologist?
Hi. Is it Doctor X? Hi Dr. X. I’ll just take that from you: It’s distracting. You can pick it up from me at the end of my consultation.
So sorry. Is my medical appointment interrupting your texting?
This cap fest was gratifying in a sophomoric kind of way.
But I realized what I really wanted to do was get him to realize that this meeting was not about him.
To give him a good dose of empathy.
Listen, Doctor. I am sure you are a smart guy and have done well in school and studied hard to get to where you are.
Can you imagine that I did that too? I built my life, was moving forward, taking care of myself, my career, my family and then BAM! CANCER.
You are new to My Cancer but I am old hat now. I have been doing this for 3 years. Three effing years. Every time I come to one of these appointments, it feels like a lot of bull. All the pain, all the fear, all the bad times come back to the surface for me as I sit in this office, waiting for my latest news.
Treat me with humility: you don’t know the extent of my experience. Offer me information with the understanding that I may have heard this before: this has been my life. Don’t expect me to reassure you: that is not my job. I have a lot on my plate. You need to get your affirmation elsewhere
Oh, and also?
Put away that damned phone.
I realize that NED gives me the luxury to bitch about these details. I am grateful.
I hope that my griping helps those of you who are in treatment or are dealing with long term disease.
I emailed my doctor to make sure she followed up on the phone. She did. Doctor Junior is sorry and won’t do it again.
I kicked the Cymbalta after one dose. It made me unspeakably nauseous. The Side Effect Queen continues her reign.
Tags: advocacy, awkwardness, changes, coping, doctor-patient interaction, education, identity loss, mental health, self-advocacy, social media, support, what not to say
Posted in Survivorship, Treatment | 15 Comments »
This past weekend, I met Scott Slater at the OMG! Summit. I asked him to write a reflection of his experience there, as we are at different places in this whole cancer survivor gig.
Scott is a musician/producer living in Brooklyn, NY. He was putting the finishing touches on his first CD, Chained by Dreams, with singer/songwriter Michelle Hotaling when he was diagnosed with testicular cancer in 2006. After surgery, five and a half weeks of radiation and an all-clear prognosis, Scott continued his work with music. In 2009 Scott and Michelle released a 2nd CD called Sweet Clarity, and followed it up this year with a free, download-only Fleetwood Mac/Stevie Nicks tribute album called Crystal Revisions. Scott is also a mobile app developer for Time Inc. and runs a part-time energy business in which he helps people get free electricity and natural gas in their homes and small businesses.
In his keynote address, Matthew Zachary, the group’s founder and CEO, asked if there were any people present who had attended the first summit back in 2008. There was one lonely “woohoo” from the audience. (That’s right, THIS guy.) This was my fifth OMG conference. Five out of five.
(Ed. note: Scott’s the guy on the right.)
And yet, I was completely unprepared for how profoundly this year’s summit would impact me.
I’m still trying to sort that out, but I’m going to give you my best attempt.
I was so looking forward to the event. I’ve met some wonderful people at all of the many Stupid Cancer events over the years. But the people I met at last year’s summit are people who are going to with me for life, so I was certainly looking forward to seeing them again. I was also eager to get out of New York City for an extended weekend. Vegas is not my favorite place in the world, but that said I was excited for the insanity, the forced opulence and the over-the-top-ness of it all.
Friday night was a kickoff event at Moon, a rooftop club at the Palms Hotel and Casino. It was a chance to re-connect with some old friends and meet some new ones.
It was also a chance to get Jesse “Urbalist” Hershkowitz’s song “Stupid Cancer” stuck in my head
and NEVER GET IT OUT. Seriously, his brand of life-affirming, positive hip-hop is something you need to check out.
(And getting a shout-out by name in one of the verses of that song has NOTHING to do with me liking it so much. I swear.)
But even then, the weekend felt… emotional.
I had a thought that Matt ended up echoing in the keynote:
“It’s great to see so many people here … but it also SUCKS to see so many people here.”
This thought continued at breakfast the next morning. As I sat in the big banquet hall, I looked around the room at the smiling faces, old timers like me and the newcomers realizing they were in a room full of people who GET it.
But through it all, an unexpected wave of anger come over me. What kind of world, what kind of universe, derails the lives of so many beautiful, beautiful people? How many people in this room had dreams they’ll never get to realize? Medical debts they’ll never overcome? How many people in this room are going to die soon due to cancer? How many people in this room are going to die soon and they ALREADY KNOW IT?
The rest of the day brought many similar profound, heartbreaking, infuriating moments.
The young woman in the audience at the Self-Image Workshop with Stage 4 metastatic breast cancer who felt crushing guilt for the selflessness of her caretaker husband. The young man who, due to his fight with cancer, was now bald, overweight, physically compromised, in debt, and living with his parents. (“Dating is going to be fantastic — I’m a real catch,” he joked.) The woman whose significant other had just left her two months prior because of her fight with cancer — all of this as if fighting cancer itself wasn’t difficult enough. Cancer at any age is devastating, but I think these stories exemplify the unique struggle that befalls the adolescent or young adult cancer survivor.
Also on Saturday was a panel on Spirituality. I thought the panelists did a fine job of expressing spirituality in a non-denominational way but I became very interested when they decided, with 15 minutes left in the session, to open up the floor to questions or comments. The first few people who lined up to speak offered the kind of thoughts I would expect: How God has a Plan for them, how the cancer experience has all been part of a journey, how God never gives us more than we can handle, and so on. One mother came up to talk about how her son had lost his 13-year battle with cancer at a young age, and how he was at peace and with God now. I certainly don’t want to disparage anyone their beliefs — I think that when you hold a firm-rooted belief if your life, that for all intents and purposes, it exists as truth in your life.
I also knew that the sentiments I was hearing weren’t my truths.
But then a young woman whom we’ll call Chemobabe stepped up to the mic. She recounted the story of losing her brother to cancer years ago, receiving her own diagnosis shortly thereafter, and the ensuing struggles with which readers of this blog are no doubt familiar. And she was angry about it. And I could feel it in myself as well as see it in the nods of agreement around me:
Anger was the elephant in the room.
Here we all were at a panel on spirituality, in one way or another maybe hoping to leave somehow enlightened, whether it was by being reminded of a loving God, or the power of serenity, or the concept of surrender.
Well, I felt enlightened: I was angry.
I knew the panel was running out of time, but I felt the need to go up myself.
“What are you going to say?” asked my friend Alexandrea.
“I have no idea,” I replied.
I do remember it pretty well though. I stated that I am not a religious person at all but that I consider myself very spiritual. I can confidently say that I believe in God, but it’s not like any God I ever met in any church or synagogue.
And I came up with something that feels like truth to me: I’m not here to discover God’s plan for me; I’m here to tell God what my plan is. (Because if there IS a God, THAT is his plan for me.) My cancer wasn’t some sort of gift. It wasn’t given to me so I could learn some sort of lesson, it’s not some sort of journey I’m supposed to take, it wasn’t given to me as some sort of growth experience. It was something that happened to me. That’s all it was. But through it I have received many gifts, I have learned many lessons, I have journeyed far, and I have grown. All I know is right now, I’m alive. And while I’m alive I want to live with as much fucking color and as much vibrancy as I can muster.
There’s an old episode of “3rd Rock From the Sun” in which Wayne Knight’s character is bragging about being a cop and says, “In my line of work, it’s a good day if you come home alive.”
To which Joseph Gordon-Levitt’s character responds, “Isn’t that pretty much a good day no matter what your profession?”
Speaking of Joseph Gordon-Levitt, Saturday ended with a midnight screening of 50/50, the fantastic cancer dramedy by Will Reiser and Seth Rogen, starring Mr. Gordon-Levitt.
I had never seen it. I always wanted to, but it was one of those movies that came and went before I could get my act together. I sure as hell didn’t want to Netflix it and watch it alone on my laptop, so I was thrilled that I’d have the opportunity at OMG. The screening was in the Pearl Theater at the Palms. A group of five of us, Chemobabe included, commandeered a table and prepared to watch. Three of our group had seen it before.
Right from the get-go I realized I could not stop shaking. It was cold in the room but that had nothing to do with it.
And not too long after that, I realized I couldn’t stop crying.
Looking around the table I realized I was in good company. The pile of tissues at our table continued to grow until it became what one in our group referred to as Mount Tissue-monjaro.
There were so many scenes that hit so close to home (the detached and impersonal doctor, the abandoning significant other, the coldness of the hospital rooms and equipment, the sickness due to treatment, the sudden disappearance and loss of hospital compatriots), but there was one scene in particular in which Gordon-Levitt’s character, after an eternity of seemingly taking things in stride, has a complete meltdown in his friend’s car in a well-acted scene that I literally almost couldn’t bear to watch.
Thank goodness for bars in Vegas being open 24/7, and thank goodness for tequila. (And thank goodness for amazing people to share said tequila with.)
The day after Mt. Tissue-monjaro. We cleaned up alright.
And so it was that the weekend triggered, in a sense, the humble beginnings of my own Car Meltdown moment. I’ve taken lots of things in stride. I’ve experienced the hospitals, the loss, the abandonment, the aloof doctors. But I never really experienced the meltdown. After this weekend, I can feel it coming — maybe not to the extent of the scene in the movie, but I can tell that, even more than five years out from the end of my treatment, I have a lot of issues that I have yet to deal with despite feeling that I was “done” and that I had begun to move on.
My birthday was Monday, the day after the conference. I was talking to my best friend from high school. He was on the 89th floor of the World Trade Center on 9/11. Obviously, he survived though he can now recall probably a dozen separate instances in which he very nearly died. He has seen, heard, and experienced some truly terrible things. He finally went into therapy a couple of years ago and had this to share from his therapist:
When someone goes through a traumatic experience, the mind essentially separates the memories of what happened from the reality that it was YOU that was having the experience. It’s a survival mechanism: When you look back you tend to see it almost as if it happened to someone else. However, by the same token, mental health is restored, hopefully, when those links begin to reconnect. This begins to happen in most people between 5 and 10 years afterwards. I’m now five and a half years out — I am pretty sure this is the process that was sparked by OMG 2012.
I’m not relating all of this to scare anyone going through, or recently out of treatment. I think you already get the sense that this is a long, long process.
I’m relating all of this so that you remember to always be open to the process and to surrender to it while always keeping your mind open and accepting the well-intentioned care of your loved ones.
If you feel anger, feel it.
If you feel aloof, be it.
If you feel like crying, do it.
And if you start to feel those scarred strands of memories reconnecting somewhere down the line, let them.
No one gave you this experience so you could learn and grow. But don’t be afraid to learn and grow from it anyway.
Picture what it is like, being in the hospital.
The sterile, enclosed environment. The fluorescent lights, the rooms designed for medical treatment, not for any kind of aesthetic pleasure. The machines ominously whirring and bleeping. The periodic sounds of crisis in the hallways. The shadows of mortality and frailty. The bland, institutional food. The strangers who come in, announce their names with varying degrees of engagement, perform tests, invade your body, give treatments that cure but hurt. Isolation from family and friends. Pain, discomfort, frustration, uncertainty, followed by hurried interactions filled with obtuse, technical language.
What is the opposite of being in the hospital?
Cancer retreats always seem to provide an answer to this question. I’ve been to a few now, so let me explain.
Life Beyond Cancer said that the opposite of a hospital is a spa-like retreat. We had a program of activities at a calm and self-directed pace, delicious healthful food, companionship, inspiration, and activities to soothe and heal the body.
Little Pink Houses of Hope sets its retreats at the beach: fresh air, sand, the expansive ocean, and sunshine. Our days were filled with art, outings, no financial stress and quality family time.
This past weekend, I had the pleasure of going to the OMG! Cancer Summit For Young Adults with StupidCancer.com.
(Faithful readers may remember that they are the group with whom I ran my first post-treatment half marathon.)
Stupid Cancer has a different answer to the Opposite-of-a-Hospital question:
Photo by John Sabia
Literary theorists talk about the human need to turn the World Upside Down (WUD). Think Charlie in the Chocolate Factory or Dorothy in Oz. It’s a way of regaining equilibrium, particularly after a stressful situation.
My belief that cancer retreats seek the Opposite-of-the-Hospital to help us regain equilibrium.
Vegas definitely turns the hospital world upside down. Raunchy, smoke-filled, hedonistic, youthful, indulgent, living in the moment, sin, impulsiveness, swaths of people, over-the-top spectacles, the cacophony of music and slots.
More importantly, the conference itself was terrific.
Workshops focused on a combination of social and emotional issues relevant to young adult survivors: sexuality and body image, dating and relationships, spirituality, links to the environment, careers, insurance, advocacy.
Then we would do things like dance to a DJ in a rooftop nightclub.
Screenwriter Will Reiser spoke with Stupid Cancer founder Matthew Zachary on Saturday after receiving the first ever Extreme Survivor Award for 50/50, his film about a young adult diagnosed with cancer.
Will Reiser & me. He’s a super nice guy.
That night, we had a midnight showing of 50/50. It’s a great film that captures many of the truths of young adult cancer, despite the few inevitable Hollywood touches.
Although I had seen it before, there was something unspeakably wonderful about sitting in a room full of young adult cancer survivors. We bonded through knowing laughter and deeply pained tears of recognition. At the end, my companions and I had filled our table top with tissues. We needed no words to explain the sobbing that overtook so many of us.
But tequila helped.
What happens in Vegas gets posted on the Interwebs. But it was a moment worth remembering.
I was invited to speak on a panel on life after treatment.
(YouTube video forthcoming…)
My friend Naveh says with my purse out front it looks like I walked in off the street
and strolled up on stage saying, “Let’s do this thing!” then went shopping.
When you meet other young adults who have been through cancer, you can tell your back-story in two sentences. In normal life, it takes paragraphs to explain a cancer experience. Even if you get that far, it never adequately captures the experience.
Starting the conversation so deep into something that has profoundly altered your life allows you different kinds of conversations and connections, the kind that deepen your own understanding of your self and something that has touched you at your core.
That kind of experience, without a doubt, is the World Upside-Down.
Tags: advocacy, attitude, body issues, changes, coping, daily life, gratitude, hope, identity loss, mental health, self-advocacy, stupid cancer, support, survivorship
Posted in Survivorship | 14 Comments »