Revlimid 3-Week Update

I have been taking the Revlimid immunotherapy treatment pills for just about three weeks. I think it’s safe to say that overall I have been feeling well and that the side effects are not much at all. The initial few days on the medication were tough, but that is always the case when shocking my body with a new set of chemicals. Everything seems to have synced up nicely. I no longer have the pain I was having in my bones when I first started (remember, this was a good thing indicating that my natural killer cells were zeroing in on the cancer cells and causing a flare, we hope). The fatigue is still pretty intense, but my head is clear and I’m able to live like a non-cancer patient, so for that I am grateful.

However, I can’t say that things have gone so smoothly during my continued adventures with Prednisone steroids. As I mentioned in my latest medical blog update, I had tapered down to zero after three months of use and my body went haywire with immense body aches, fatigue and high fevers. The Columbia team put me back on 10mg along with the start of the Revlimid 10mg to get things stabilized again.

After a week, I was having muscle vibrations and loss of strength in my quads – a common side effect of prolonged steroid use. To combat this, the team agreed to wean me off again as I was no longer having fevers. I started to taper off of the 10mg by 2.5mg at a time, dropping every five days. Apparently that wasn’t slow enough.

Bogus

This is a piece that I wrote and shared at Syllable: The Reading Series, held monthly in Hartford at La Paloma Sabanera Coffeehouse. This month's theme was "Bogus." Inspired by the masked world that social media can sometimes be, I chose to write a satirical piece on the bogusness that can lurk in Facebook status updates. 

Hopefully it's clear that there's a lot of biting sarcasm in here and that I'm certainly not passing judgement (I am a social media fiend and guilty of many of these scenarios), but instead, making a social observation on the TMI world that we live in. Again, it's satire. 

Hope you enjoy!

Proud Member of the Chevonnetourage

Craig and me with Chevonne putting our paws up before 

her performance at the Lady Gaga concert in Houston.

I get really jacked up when I see someone find their passion, work hard to follow it, and find success. When I know that someone personally I get just that much more excited.

This is the case with Craig's cousin, Chevonne, who I believe I can stake a claim to as my cousin also, since I'm married in, and because I have only one recently acquired (finally!) cousin of my own. As Craig and I have been together for 12 years, I've gotten to watch her grow up, was there celebrating Bat Mitzvahs and at her family's home for many a Chanukah gathering.

She has a ridiculously incredible voice and has been honing her talent for years, studying music in college and coming out of school with a bang. I remember Craig and I going to see her play at a dive bar in Danbury, Conn. years ago. She told us how she had to drive all over the boroughs of New York City to pick up the members of her band and get them together for the gig. Band members were pulling out on her all the time and she was constantly having to adapt and regroup. She was lugging all of her own equipment, making her own staple fashions to wear, but all the while lighting up the stage like she owned it – because she did. She belted out her original songs and accompanied herself on her keyboard. I was so impressed then, leaning on a bar stool watching her performance beside her parents and Craig.

Poetic Therapy

This isn't the first time I've posted this poem by the poet we met in Old San Juan, Puerto Rico, but its sentiment is again very appropriate. It's what I strive for – to let go of the expectations and let things go unanswered.

When I was very sick in the hospital recovering from my transplant, I'd have whoever was with me the latest read me a poem to put me to sleep. I had several books of poetry in the room with me and I'd let them choose which to read from. It was soothing and calming and digestible at a time when weighty prose was too much. Poetry helped me to envision beautiful places or just get transported by the words and rhythm. With my mind quite overwhelmed right now, little by little sounds just about right.

Little by Little

I'm letting go little by little, but I am
It sometimes hurts. I sometimes cry.
I sometimes erase it all
And sometimes I try and I can't.
But I'm letting go. I am.
That's just the way I am.
I can't help it anymore.

My mind races.
Unlike the hare
Who had patience to compete.
I'm racing to defeat myself.
It's torture in a shell
My heart has been to hell
I'm letting go.
Little by little, but I am.
I learned that now I can.

Sometimes it's good.
Sometimes it's ssweet.
There are times too
That I never meet a standard.
Where questions flow unanswered
And it's okay in itself.
I'm taking down the shelf of expectations
Crowded by imitations
I learned that now I can.

I'm letting to. Little by little.
But I am.

-Lady Lee Andrews

The Buts

I want to sleep in late, but Sammy dog has to go out and get fed and so do I, so I get up.

I want to be productive and wildly incredible every single day, but then I get tired and those plans unravel quickly.

I want to roll back over under the covers, but the morning sun shines brightly in my window coaxing me awake, and I can’t deny that.

I want to ignore the dishes and the laundry, but Craig and I have to eat and we have to wear clothes, so eventually I stop ignoring them, and I wash them.

I want to wallow in my pain, but then I remember that everything is still in tact – I have 10 fingers and 10 toes, I can walk, I can talk, and I’m still breathing, so I get up and utilize them.

I want to hop a flight to Paris – or maybe Fiji – and never look back, but I stay because I have a husband and a dog and a home that I love more than anything.

I get angry, but then I smell the crunched-leaf scent of fall, see the tree colors getting impossibly more vibrant, have a calming visit with a friend, hit my stride on a writing project, or see a video of my nephew singing in his underwear, and I can't be angry anymore. 

I want to pretend the toppling stack of medical and household bills isn’t there and just count it as part of our kitchen décor, but I stop pretending, and I go through them because homelessness and collection agencies don’t sound like any fun.

I sometimes complain that I got dealt a bad deck, but then I realize how damn good I’ve got it.

I’m unsure of my body’s capabilities, but then I test them and I’m always surprised that it can still take me where I want to go.

Sammy at our look-out spot above the valley.

I want to cry when I see a pregnant woman and know that’ll never be me, but usually I can hold my composure, at least until I get back in my car.

I get frustrated that I’m exhausted all the time again, but then I think of the alternative and frustration turns to gratitude.

I want to punch people in the face when I see a cigarette in their mouth, but I don’t because I have some sense of self-control still (though I’m not making any guarantees on that one).

I want it all to stop: the decisions, the confusion, the side effects, the questioning, the fear, but then I don’t want it to, because that would mean it’s over, and I don’t want it to be over.

I want to give up sometimes, but I love life too much, so I don’t. 

Back on the Revlimid Saddle

A visit to Dr. O’Connor with Columbia/NewYork-Presbyterian in NYC confirmed my gut instinct that giving the immunomodulating drug, Revlimid (lenalidomide), another go is my best move at this time.

Revlimid is not a new drug to the market, but the concept of using it for refractory Hodgkin Lymphoma is. It has proven to work well against Multiple Myeloma and in recent years proven promising for those of us who have relapsed after an allogeneic stem cell transplant as a way to ramp up our new immune systems to better attack the cancer cells.

It is an oral drug that I take once per day. I’m starting off at 10mg to see what my body can take, with the plan to increase to 20mg daily. The drug works to wake up receptors in my body’s Natural Killer Cells (a type of white blood cell) to recognize receptors in the cancer cells, bond to them and then disintegrate those foreign Hodgkin cells. This is different than traditional chemotherapies in which it’s the drug itself that is doing the cancer killing. This type of therapy is focused on getting my own immune system to work against it.

Everything Changes, Nothing Is Lost

A little piece of my heart left me on Sunday. My incredible friend, my inspiration (he’d hate me calling him that, but it’s true), my cancer counterpart, Steve Dickter, passed away on Sunday, enduring complications from his donor stem cell transplant.

Jen, Steve and me at our first in-person encounter. 

I’ve never had such a physical reaction to news. I saw the simple two-sentence e-mail from his wife, Jen, with the subject line “sad news” and I burst into violent, choking heaves of crying. I got so hot and kept pulling off layers – unzipping my jacket, clumsily unraveling my scarf that suddenly began to strangle me.

Craig pulled over the car not having any idea what I was reacting to until I threw the phone at him, he read the message, put his hand on my leg and let me sob it out. He was visibly reeling as well. When I could finally speak, all I could say was that I felt like my heart had broken. My chest was in knots that have yet to untangle.

Steve and I were partners in this cancer journey. We were the ones that were going to make it far past this. He was my constant sounding board, advocate, interpreter, and reality check.

In the crazy, uncomfortable world of cancer treatment where no one knows what to say, he always had the right words. He was very real and honest, witty and ballsy. So smart and so modest. Steve was as authentic as it gets. He was kind, loyal, compassionate, thoughtful and genuine.

He was just a few years older than me. We had the same disease. We had the same attitude toward it: action, defiance, education, at times, acceptance and frustration. We endured all the same drugs. He also had a spouse that loves him tremendously and he the same – a beautiful relationship. We both were in the communications field. We both got riled up about current events. He wrote a fantastic blog full of clear, funny, sarcastic, insightful and informative writing. We both loved music and lyrics and quotes. Eddie Vedder’s “Rise” was one of our shared motivation songs and he introduced me to Colin Hay. The only thing that separated us was the whole of the United States – he stumbling through this on West Coast time, me on East.

His blog was the first that I found of someone just like me; he seemed like a very cool person that I’d want to be friends with and we just happened to have the same disease. I reached out and he e-mailed right back saying, “Woah, where have you been?” returning the blog compliments I had given him after he read through my posts. I found him in the very beginning, just six months into my treatment. He was ahead of me, so I was able to learn from and follow his lead, his tips on side effects and coping mechanisms, his ups and downs. Then I relapsed first, then he relapsed and followed me, then I, then he. Our paths have been so, so similar.

Our relationship grew and evolved together as we got deeper and deeper into this journey. We rejoiced in each other’s positive news and were defeated when we heard of relapses or infections, always there for each other to lean on. The messages from him and his wife resonated on a different level.

After e-mailing for a couple of years, we met for the first time in person in New York City, and I hung out and talked with him in his friend’s apartment like we’d been best buds since the elementary school playground. When we parted ways after grabbing a bite with Jen, he gave me a huge hug on a city curb and said: “I love you, Karin Diamond.” And I said, “I love you, Steve Dickter” back. It was one of the most real exchanges I have ever had in my life.

We stayed with Steve and Jen in LA the following year and felt as if we’d been in their apartment many times before. Steve and I napped in between the day and evening events, while Jen and Craig sat in the living room and talked caregiver and life talk while we patients rejuvenated.

We went out to dinner where we shared so many laughs – especially about the odd rotating white board listing that evening’s offerings, which would be crossed out by the minute as they were ordered by others – decisions had to be made quick. We laughed a lot about this.

When things got hard, he would tell me that it wasn’t me, that it was the drugs, not us, making us walk around like zombies until our spouses came home to infuse some life into us. He helped me to know not to blame myself and helped to teach me that we can’t let this disease limit us: he was teaching college courses during treatment and pursuing his Master’s degree in communication – writing his thesis while an inpatient in transplant recovery, while also managing several fantasy football leagues, and somehow remembering to check in with me.  

Steve attached this word art to the last e-mail he sent me.

We talked about how our ovaries hurt when we see cute babies, how we hate that we can’t always be there in the way we want to for our spouses, about our futures and all of the beautiful things they held. We would joke about how life doesn’t give a shit that you’re in cancer treatment and it still brings the normal drama of everyday life to manage: flooding basements, unplanned townhouse repairs.  

We talked about how people would tell us we’re inspirations or heroes and how that’s so hard to accept as all we’re doing is what needs to be done. But then, we’d each find ourselves calling each other that. He told me I had Moxie. We said that we were each other’s lights in the tunnel. 

We had a sadistic humor that we could be comfortable and open with, making each other laugh in really horrible situations.

He helped me see straight, he helped me find treatment drugs, he helped me clean up my treatment timeline document so that I could find the doctors I needed. We sure didn’t want this situation, but we both did our fucking best with it, managing our lives with clear focus and determination, but keeping the fun factor alive.  

He always told me that: “This too shall pass.” I suppose it’s a reminder that everything is transient, including the lives of those we hold the most dear. He has passed, but I am forever grateful that he passed through my life. He was one of my greatest gifts.

I am deeply saddened and hurt so badly for his wife Jen, the most devoted wife, friend, caregiver, and cancer researcher I’ve ever come across. She is a beautiful person, and I wish that she didn’t have to deal with this heartache.

It’s going to be very hard to move on in this without him. I have a huge hole in me. I can’t stop reading the posts on his Facebook page and looking at the pictures friends are posting of him from a life before I knew him. All I can do is carry his spirit in my heart and let it guide me through this and defeat this disease for the both of us.

His birthday is my donor stem cell transplant re-birthday, and I’ll forever dedicate June 16 to him. Right now, I’m just in total disbelief and it hurts very badly; I’m grieving very deeply. It’s not supposed to be this way. I miss him and my heart hurts for beautiful Jen.  

He told me that this was one of his favorite mantras: "Omnia mutantur, nihil interit" (Everything changes, nothing is lost.). This change is a tough one for me to swallow, but I know he is not lost because his light will carry on in the love and the lessons he left the countless people whose lives he touched while here with us.

Coping Mechanisms

Breaking Bad as therapy?

I’m sure everyone lives their days following receiving traumatic news a little differently than their ordinary days. For me it’s been a combination of research, crying, e-mailing, sleeping, reading scientific studies, reading gothic novels, watching violent TV shows, more crying, more reading, more corresponding, more research, and perfecting my drug dealer voice: “Slinging ICE on the streets, yo!”

What does this all mean? It’s been my survival pattern as I’ve eased down from the initial shock of my surprising scan results and moved from “What the F?” to “Holy F’in S” to “S just got real and I’ve got to get it together.”

No, I’m not slinging ICE nor cooking glass, but oddly as it sounds Craig and I have gotten totally swallowed up by the AMC show Breaking Bad. We started with Season I on Netflix and the drama of watching a high school chemistry teacher get wrapped up in cooking and selling Crystal Meth to pay his medical bills and provide for his family, while dealing with inoperable lung cancer has been the perfect distraction. It’s an incredibly written show.

At least I don’t have to dissolve dead bodies or walk around a grocery store naked to get myself hospitalized so my wife won’t wonder where I was (which was dodging bullets from a drug lord in the desert). This is what I mean when I say I’ve been practicing my punk dealer voice. It makes Craig and me laugh when we pretend to be badasses and the show totally engrosses us. Way better than thinking about our own crap.

It was raining for three days straight. The weather shared in my misery. The dreary darkness certainly didn’t do anything for my spirits. It’s been difficult motivating myself to get out of bed each morning and for a few days there was difficult to even speak without my lips quivering and the tears starting to fall.

I’m suddenly very achy and very tired. My mid-back and lower back are sore and angry and the muscles in my neck and shoulders are in knots. I’m pretty sure that it’s more stress related than cancer related – the fatigue especially. Taking this all in is just exhausting.

I did get myself out of the house to the town library where I brought a totally transporting book we’re reading for book club and a pumpkin spice latté (soy, no whip). I cuddled into a comfy chair and ottoman by the window and watched the rain tousle around the dried, colored leaves and just read – for several hours – until I finished. It was glorious.

After putting some feelers out to the medical world I’m exhausted further, but I’ve got some good leads for possible treatment options to explore. Things are cooking:

• I landed an appointment on Monday with the famed “Dr. O” (Owen O’Connor at Columbia in NYC) and am eager to hear what he thinks may be an optimal treatment plan. He is always buzzed about in the Hodgkin world for his expertise in novel treatments for refractory patients. I saw him last spring and am eager to reconnect.

• I also have connected with some doctors at the National Cancer Institute in Maryland through a friend, and they are exploring my eligibility for a possible clinical trial there that involves radiation and a DLI which I’m very interested in.

• Dr. Moskowitz talked to Dr. Anas Younes at MD Anderson for me (another big wig in the Hodgkin world) and he has a trial in Texas for me but also agreed with trying the Phase I trial of PU-H171 at Sloan-Kettering, which I’m slated for initial consult on in three weeks.

• A research doctor at Seattle Genetics (the makers of SGN-35) – whom I connected with a couple months back through the help of my buddy Ethan Zohn to talk about my lung issues as an SGN-35 complication – is now looking at my current status with his team to see if they can come up with anything.

• I’ve received lots of e-mails with offers for referrals, advice on treatments, and links to clinical trials. For that I am so grateful and am still working on weeding through it all. 

More importantly than all the medical leads was the outpouring of e-mails, blog comments, and Facebook messages I’ve received since Monday that filled the hole in my soul. I am so grateful for the kindness of my friends – close and distant – and from the perfect strangers who took the time to tell me how much they’re rooting for me and how much my story has meant to them. It’s messages like those that keep me moving forward. Sure, many of the heartfelt e-mails I got added to the water works, but they were sentimental tears, not tears of defeat.

Today the sun came out and I finally gave in and let my mom and sister come take me out for lunch and a hike. We took Sam to her favorite place: Nod Brook Wildlife Conservation Area and enjoyed a nice walk in the unseasonably warm weather taking in the foliage of Talcott Mountain in the distance.

The tears are less frequent and I’m starting to smile again. Craig and I laughed a lot last night scaring each other with fake finger guns and making up stories about how the dilapidated blight-of-a-house on the end of our street is most definitely a meth lab.

It’s funny the strange things we (I) do to cope, but it doesn’t really matter what they are does it, as long as they help us out of our funks. I think I’m on my way. I’m still just very, very tired.

Well, Happy October

My opponent: Reed Sternberg cell indicating Hodgkin Lymphoma presence. 

It looks like owl eyes or a pig's nose - or a big asshole, depending on how you
look at it. 

October did not get off to the start that I hoped it would. It’s turning into autumn, the leaves are a golden palate and the air is getting crisper. With that, I knew would come my own change, as always happens at the crossroads a PET Scan provides, but this was not the change that I wanted.

My October started with a figurative punch in the face, and then the gut, and then a few more times in the flank. I didn't even see it coming. I had no time to put up my dukes. 

My mother and I sat in the small, harshly bright exam room awaiting the scan results that Dr. Moskowitz would bring in with her.

“So you’re feeling well?” She asked, having already debriefed with her nurse that I met with previously. “That’s great … .” she trailed off.

“I feel very well except for the anxiety I have over this scan,” I replied.

“Well, the scan doesn’t look great,” she said. I know it was difficult news for her to deliver.

No, it doesn’t look great. There are new lymph nodes lighting up in my chest and abdomen, which likely indicate new disease sites. The bone involvement in my hip, pelvic and sacral areas is much hotter than my last scan indicating increased metabolic uptake. My bone lesions are the worst, as evidenced by the higher SUVs (a measurement of the absorption of the radioactive tracer I was injected with, calling out the highly metabolically active areas). The left iliac wing had an SUV of 2.7 on my July scan and is now up to 15.5. My right sacrum went from 2.3 to 7.5, and my right femur from 7.7 to 10.7 SUV.

I don’t understand. Could it be all that dancing I did at Thea’s wedding Friday? Could that be giving a false read? I asked her how they know that this is more cancer and not just inflammation from my own body fighting the cancer itself in those areas. She said that they don’t know anything for absolute certain, but the fact that there are new areas of internal swollen lymph nodes (with SUVs up to 11.4) makes it much more likely that the disease is again on the rise and has again learned to morph around the treatment that was keeping it stable. It’s a son of a bitch.

We've taken me off the SGN-35. I did not get the treatment I was due yesterday. It is obviously no longer working. There is no plan right now, we’re grasping at straws for what to do next. Part of me just wants to sit on it and see what happens. The fact that I had an allogeneic stem cell transplant excludes me from many clinical trials of new drug agents. We’re looking at MTOR and HDAC inhibitors, though I’ve already tried many of them. We may need to revisit some of the drugs I’ve already been on in those categories, though many haven’t been approved for Hodgkin’s yet, so I’d have to be receiving them off-label and risk my health insurance not covering them. I’m slated to possibly try a very new drug with Sloan-Kettering’s Phase-I trial clinic, though it has never been studied in a Hodgkin’s patient, but does go after a protein expressed in Hodgkin’s cells and therefore has potential.

My head is spinning. I am overwhelmed, sick with worry and shock. Today has been alternating crying with clinical trial research, medical phone calls and e-mails to doctors I’ve worked with in the past and contacts I haven’t yet tapped into. I’m open to traveling anywhere I need to to find the treatment that I’m still seeking to put me in remission. My confidence is waning a bit, but I do believe that the key is still out there.

I am fortunate that I am feeling no pain at this time and that I am otherwise healthy and strong if you took the lymphoma out of the equation. That is a crazy reality to me. There has got to be something that will get this disease in check. I don’t understand why I have to be the one dealt this deck. Why do I have to have the unrelenting syncytial variant type of Hodgkin’s lymphoma? Why do I have the bone lesions, which make this disease nearly impossible to wipe out?

I have my game face on and am delving into the required research, but I’m hurting pretty badly inside. I just truly thought this drug would have given me more time. I had a good run and I wanted more.

No one can ever say that I haven’t tried. I have been treated at four institutions, two of the best cancer centers in the nation, I am seen by a hematology oncologist, a lymphoma specialist, a transplant doctor, a radiation oncologist, a naturopath physician, an oncology psychiatrist. I have shoved all of these treatments into my veins, down my throat or radiated through my body:

Chemotherapies (Nearly 30 drugs in 3.5 years):

• Six cycles of ABVD chemotherapy (Adriamycin, Bleomycin, Vinblastine, and Dacarbazine)
• 3 cycles of ICE chemotherapy (Ifosfamide, Carboplatin, Etoposide) 
• DI-CEP (Dose-Intensive Cyclophosphamide, Etoposide, Cisplatin)
• BEAM (Carmustine, Etoposide, Cytarabine, Melphalan)
• Three cycles of GND chemotherapy (Gemzar, Navelbine, Doxil)
• Two cycles of Bendamustine on clinical trial
• Four cycles of SGN-35 acquired on compassionate use basis 
• Two cycles of Phase I/II Clinical Trial of Panobinostat (LBH589) and Everolimus (RAD001) at MD Anderson Cancer Center in Houston, Texas
• Fludarabine and Melphalan, plus Methotrexate injections
•  Vorinostat (SAHA) 
• Revlimid (lenaldiomide)
•  Five cycles of Vinblastine
• Cyclophosphamide, Etoposide, Procarbazine oral chemotherapies
• Post-transplant retry of SGN-35 aka Adcetris or Brentuximab Vedotin for 7 cycles

Radiation:

• 10 days of highly targeted radiation to T7 and T10 vertebrae and lower sacrum

       Immunotherapy:

•  Mini Autologous Stem Cell Transplant
• Full Autologous Stem Cell Transplant
•  Allogeneic Stem Cell Transplant 

What’s left? Anyone have any educated ideas, please feel free to send them my way. If I sound snarky and angry it’s because I am right now, and I think I deserve to be for a little while here as this new information settles into my understanding.