Recovery Road ... Until the Next Intersection

I've been working very hard at getting better. It's not easy work, but it's vital work. I have more motivation to do this than I've ever had because this may be the best that I feel for a very long time.

And when I say "best," I don't mean that I feel stellar. In fact, I'm actually very fatigued and ridden with various body aches and stiffness and have a couple things brewing ... . But what I feel is nothing compared to what I've felt in the past. The whole wellness meter is completely shifted. My gauge of what feeling good means is way off kilter from a "normal" person's. Regardless, for where I've been and where I'm at, I'm thrilled at what I feel like. When the fatigue becomes too much, I can sleep. When I had incessant foggy headedness, nausea and shooting pains from the scarring in my veins, that couldn't just be pushed away by a nap.

What I can be grateful for is that I am feeling. Being capable of feeling – whether its pain or euphoria – means that I am alive. I will take that over the alternative any day. I believe it was President Lincoln who once said: "It's not the years in your life that count. It's the life in your years." Well, Abe, I want both. Does that make me greedy? I know I've had incredible life in my 28 years, but I want more, many more of them.

My happiest thoughts are of me at 93 years old gazing at a lake on which sun rays are dancing, sitting in the same rocking chair that Craig gave me on our wedding day – his wrinkled hand tangled delicately in mine as our kids and grandkids and great grandkids climb trees and build mud castles all around us.

The most difficult part of my current situation is knowing what is coming next and that even when I get through it, not knowing how much time that procedure will grant me. I asked my oncologist point blank last visit why I should go through with the allogeneic stem cell transplant if I can have decent quality of life on this chemo drug without having to face the incredible risks of transplant.

She explained kindly and matter-of-factly that I can only be on SGN-35 for two years as it is not safe longer than that. Once I have to come off, without something to keep it at bay, the lymphoma can get to a point where it will "hurt me very badly." (translation: asphyxiate me from the inside.) With the transplant, yes, the risks are grave and the survival rate is low, but it is my only shot at a long-term remission or "cure." I don't need more chemo drugs. I need my sister's immune system. Period.

These types of conversations are sobering for sure. Maybe I'm dumbly optimistic, but I still think that I'm just as invincible as I was pre-cancer. The hope is that the cancer isn't. Get that out and I'll be good to go. Of course I'm scared of what's to come and I get frustrated looking back at all the intense treatment I've been through and finding myself in the same boat, but I keep telling myself that I will be in the 30% that survive this treatment, and one of the even smaller percentage that does it without debilitating long-term side effects. Despite this damn cancer thing, I have a lot of positive factors going for me.

What is incredibly unnerving is feeling like I have no control over what manifestations and mutations those cancer cells decide to take. My hope is that their multiplying nature pales in comparison to my own fighting spirit, but my reasoning knows that it's all up to biological nature. However, having no control over the cancer's course does not mean that I don't have control over how I respond to it and over the shape that I keep my body in by how I exercise it, what I feed it, how I honor it.

Months back I was suffering from a neutropenic fever. It was post-transplant and when I hit 100.6 that meant an automatic trip to the Emergency Room. While there, a young couple came in with their little girl who looked to be about 7 years old. Despite the rows of empty seats in the waiting room, the mom chose to sit right next to me bouncing her hacking child across her knees, talking uncomfortably loud in broken English to a woman sitting far on the other side of the room. In between their undiscernable rants I caught the words "strep throat" and "fever" and saw the glassiness of the little girl's eyes. I got up and asked for a mask and gloves at the nurses station as a feeble attempt to protect myself from some of those germs. I came back and chose a different seat.

"What you, a doctor?" she asks me in a tone that stung like a paper cut, completely unaware that I'm the same person that was just sitting next to her.

I replied back calmly that no, I wasn't a doctor. That I was a cancer patient that has very low immunity. That it was no offense to her and her family that I moved and put on a mask, but in fact that if I caught any kind of bug, I may not be able to fight it so I have to be careful.

She takes in a huge, uncomfortable gasp of shock and blows back out: "Oh wow, you brave. Dear God. Bless you child ... " and she goes on and on rambling as if she was facing death incarnate. Suddenly in her mind I was of a different species oozing black bile that would infest the whole damn place. Just moments before, she was so unaware of anyone else in her space that she sat right on top of me.

Then her husband, boyfriend, lover, baby daddy?, chimes in after this woman puts down her seeping wax paper cup full of a red beverage that was likely not Juicy Juice, points at me and tells him that I have "THE CANCER."

He looks me up and down. His vodka soaked lips curled and his words oozed out along with the stale fragrance of a 9 a.m. boozy cocktail of nips:

"Pssshhhhhh," he said, with a roll of his eyes and an exaggerated wrench of his head. He slunk further into his seat and his crusty pant legs spread even wider apart. "Girl, you lucky. Most of us are trying to die."

I was knocked out by the naiitivity, the insensitivity, the audacity and the sadness of his comment. It was less offensive for me to hear that he assumed that because I had cancer, I was dying, but moreseo to think that there are people out there whose lives are so much of a living hell that they pray every night to die. That they don't plead for another day to enjoy like I do, but beg to not have to face another one.

I seethed behind my mask and opened my book in front of my face to make it blatantly obvious that this conversation was over. Before I could digest what he had said and formulate a response that could possibly convey how much I wanted to hug him and punch him at the same time, I was saved by the nurse who called me into another room.

Now six months later I think I have the rebuttal: "I am not dying. I am not trying to die. I am trying my damn hardest every day to LIVE in every sense of the word. Maybe if you did the same, you wouldn't be so desperate to get out of your own destructive way."

Life is about choices. Who you chose to surround yourself with. How you choose to approach things. How you choose to react to things. A most important choice is choosing not to dwell on the negative, but to find the beauty in every situation. If I chose to focus only on all of the challenges and frustrations in my life, to wallow in misery, I would never want to face a day. I'd be in the same boat as that man in the ER waiting room with the empty eyes and the eerie swagger. Beauty and good fortune always exist. Sometimes it's real hard to see, but it's there, trust me. It's in everything and everyone.

I have a quote that I cut out from Real Simple magazine that I taped on my refrigerator at least a year before I was diagnosed. It hasn't left its post and I smile at it often. It reads: "I love living. I have some problems with my life, but living is the best thing they've come up with so far." - Neil Simon

SGN-35 Treatment Two

I got through the second infusion of SGN-35 without blowing up or caving in and for this I am grateful and happy.

My mother accompanied me to Sloan-Kettering this time around. My appointment with the doctor was early – 8 a.m. on Thursday so we trekked into the city the afternoon before to avoid wee morning hour travel. My anxiety built for the few days leading up to yesterday. Wednesday I did my usual dragging feet routine. I slept until 9:30 a.m. (very late for me) and found many, many things to do around the house that morning. I didn't get into my car to drive to my parent's house until the last possible moment. I was procrastinating the inevitable I suppose ... the knowingly placing your hand on a hot burner phenomenon.

The train ride in was uneventful. As I usually do, I decided to factor some NYC culture into our agenda so that the trip wasn't solely medically related. I like to have that balance and to take advantage of the time that I get to be in New York City because soon, I'll be confined to my hospital room for many weeks and will be restricted from those things that I love – good restaurants, theater, museums for a very long time. But that is not now so I must live and love them now.

After checking in at Miracle House, we walked to dinner at a Hell's Kitchen hole-in-the-wall Thai restaurant my Manhattan guru Lisa recommended: Olieng Thai. There are just seven tiny tables and the staff is sweet and so friendly. The walls are covered with affirmations, quotes, romantic musings and food recommendations shared by diners who had scrawled with neon pen on the mirror lined wall. My mom enjoyed stir fried veggies of all sorts while I warmed my insides with a fragrant bowl of yellow curry with sticky rice to soak it up with. We topped it off with green tea and shared a fried ice cream – what an intriguing, indulgent combination that is!

In my chemo procrastination/denial stupor I had come across reviews for a play on Broadway called "Time Stands Still," which is running for just another couple of weeks. I fell deep into reading all the reviews, about the story line, the Pulitzer Prize-winning playwright Donald Margulies, the esteemed four-person cast of award-winning actors, including Laura Linney and Christina Ricci. It lived up to its reputation.

I treated for nosebleed seats. We were in – literally – the last row of the theater at the very back of the rear balcony among all of the college theater students, but this truly did not hamper the experience. To see a show of that caliber for only $34 was completely worth the four flights of stairs we had to climb and the initial vertigo we experienced. But for real, the view was completely unobstructed and we were both immediately absorbed in and enthralled by the story. It chronicled a photojournalist and freelance writer forced to leave their adrenalin driven lifestyle of covering wars, genocides and natural disasters due to mental and physical injury and how this drastic change to "mundane" life effects them as individuals and their relationship. It was multilayered, intricate, delicate and so very real. I most certainly could draw some parallels to my own life and some of the lines Laura Linney's character, Sarah, delivered were ones that have come out of my very own mouth: i.e. "Don't touch me. I can do it myself!" as she's trying to manage with a brace on her shattered leg.

As an added bonus to an evening of great theater – the kind of story that I'll ponder forever – we got to meet some of the actors afterward. We just happened to stumble on a crowd and barricades at the backstage theater exit and saw both Christina Ricci and Laura Linney leaving in their street clothes after the performance. Each signed autographs and posed for some pictures. I felt fortunate to have the opportunity to tell Laura Linney how much I enjoyed her moving performance ... and now I have her autograph on my Playbill and a picture my mom was able to snap of her giving it to me. Now I must watch her Showtime series: "The Big C" about finding the humor in a cancer diagnosis.

All of that excitement did wonders for squelching my anxiety about the next morning and for tuckering me out enough to fall asleep despite being in an unfamiliar twin bed on wheels with the even more unfamiliar sounds of car horns and rumbling buses 10 floors down outside our window.

Thursday morning inevitably did come and I woke surprisingly refreshed to the awful sound of my mom's cell phone alarm. Everything but the banana I had shoved in my pocket made it in one piece across the city to Sloan. Nearly immediately after I had my CBC done and vitals checked, we were called in to see the doctor. No wait at all. This is one of the benefits of taking an early appointment.

I presented my nurse and Dr. Moskowitz with the sputum I had caught for them in the sputum collector they had provided for me last time around. It was neon green and at once crusty and tissuey. I told them the color was an added bonus as it presented itself during my sinus infection. But in all seriousness, since my second relapse in July, I've been coughing up very strange objects (what I imagine to be fried lymph nodes). They come from deep in my chest and out my nose after much effort or sometimes just fall into my mouth. They always have the same shape and characteristics – nothing like normal phlegm. On the last visit, the doctor was intrigued by this and asked me to bring a sample. I was happy to be able to produce and am eager to hear what the microbiologists analyze it as. I have another empty spewtum cup for the next encroachment. This time it will go to the pathologists to analyze. How's that for excitement?

I also filled them in about the strange symptoms that I've been having: the left side body heaviness and occasional pulsing and awareness of the blood coursing through my veins and into my heart on that side of my body. It all goes into the notebook. The doctor said how happy she was not to have heard from me over these three recovery weeks as that meant that I was doing okay. She was also impressed to hear about the amount of activity I have been doing and told me not to get frustrated with myself. The words that really resonated were: "Karin, we're not giving you anything that is going to make me feel good" and I instantly remembered that even though I have my hair and I don't have the intense side effects of chemos of old, I am still on chemotherapy.

My blood counts were lower than I had expected. My white blood cell count is only 2.5 so I still have to be very careful to stay away from sick people. My hematocrit and hemoglobin are also low – hematocrit is only 29.6 (normal 34-46), which means that I'm still anemic and explains further why I've been so tired. There is still a massive battle happening inside my body and I can't expect to be feeling stellar. She's good at helping me to manage my expectations; at helping me be realistic but no less hopeful and expectant of what I can and will accomplish.

We talked about next steps. I have a PET Scan scheduled for two weeks from now: Feb 3. It will reveal if (that) the SGN-35 is working. Dr. M told me that it would be a surprise if the disease is completely gone after just these two rounds. Not that she was being negative, but she didn't want to get my hopes up. In the drug's studies, it has shown to take more like 4 cycles to eliminate Hodgkin's presence in patients. This test is just a test to make certain that there has been some reduction.

The infusion went well and the wait was much shorter than normal. My mom and I played Word Scramble on her iPhone while the drug dripped. My nurse was young, sweet, and very lackadaisical about SGN-35, which she was very familiar with. That helped to calm my nerves about having any reactions. And, as always, once it hit my veins and nothing happened, I could unclench my jaw. Forty-five minutes once all was said and done and we were through.

We packed up our things and were on our way off the floor when suddenly my breathing and chest were a little tight and I kept going into coughing fits anytime I tried to take a deep breath. I didn't want to go back into the infusion room but I also didn't want to leave the hospital in case something bad was happening to me. Despite my mom persisting that I go back in and tell the nurse, I was snippy and noncompliant and just wanted to get out of there. However, I wasn't stupid enough to leave the hospital.

So I found a chair in the lobby and sat. I breathed and people watched until the coughing ceased, which didn't happen until up popped another little organ into the tissue I was blowing into. After that passed through my inner tubing, things seemed to open back up. As far as normalizing my breathing, I was just short of needing a paper bag. But I knew in the back of my mind that I had gotten myself into a self-inflicted tizzy and that I could also get myself out. Nothing was wrong. I was just being paranoid that something could be.

After about 15 minutes of telling my poor mom to stop looking at me and asking if I was okay, it passed and we were finally in a cab to Grand Central and on the way home via a different train line to a different station because I could not wait the nearly two hours for the next train to Wassaic, NY, where we had left out of. I had some major ants in my pants and all I wanted was to GET HOME. Luckily my sister is flexible and picked us up in another part of the state – she could probably tell I was on the verge of a breakdown. I like to think that I'm pleasant to be around most of the time, but I don't know how they all put up with the brattiness that can kick in when I occasionally lose it.

Once the train lurched out of Grand Central and I sipped a little Dr. Pepper (odd how this non-soda drinker craved that) I felt better. Much of the ride was passed marveling at a big bellied man in an oh-too-worn white undershirt one cart up dancing in the vestibule like nothing I've ever seen. Killer moves. He was r-o-c-k-i-n-g out to whatever was pumping from his earbuds. I think he was singing as well, but we had the insulation of the cab doors between us to muffle that – probably a very good thing. That vestibule was his stage and he took full advantage of its space grapevining from one side to the other. He even incorporated the poles into his routine like a daytime stripper. It made me smile hard.

Now here I am back with Sammy and Craig and even more snow today. The sun is out and we had a beautiful, albeit tough walk in the additional six inches on top of the two feet we already have. I'm looking forward to seeing some good friends tonight but more immediately, to a much needed nap. I'm very exhausted, but very, very happy to have made it through yet another treatment.

Fish Eyes and Mid-Day Siestas

It's been two weeks since my first dose of the experimental SGN-35 chemo drug. I've been knocking on a lot of wood since because I continue to be virtually side effect free. This is of course a relative term as I can't pretend that I feel at the top of my game. I can't erase what my body has been through over the past two years. We're still playing a lot of catch up. But I'm thrilled with how far I've gotten and continue to go.

If anything, there are some odd feelings in my body that arise a few times a day. It only happens in the left side of my body, but that side will suddenly feel very heavy and that all of the functions on that side of my body are very labored. When this happens, I can literally feel – almost hear – the blood coursing and churning from my heart up and down my left arm. Other times it will happen in my left leg, starting from where my bum and the top of my leg meet and coursing with little shock waves to my ankle and back up again. It's not painful. It's not achey. It's just a strange, dull awareness and heaviness. There is also a dull ache in my lower left back that creeps in and out of my body consciousness with no apparent pattern to it.

I'm not surprised at these strange feelings when I think about the little missiles SGN-35 is planting and detonating up in my body. It's hard to know what is real and what is a manifestation of my anxiety at this point. I've read about many people who have been on the drug that felt fine for the first couple of weeks then developed incredibly painful neuropathy in their fingers and toes. I do not, not, not want this to happen to me. This is why I keep moving, keep breathing. Yoga and walking every day have to keep that blood flowing, moving, pushing through. Moving the bad out. Keeping the good in.

However, gone are the incredible body aches, tissue sensitivity and bone pain that I've felt from past drugs. Also gone is the incessant need for blood work. I have not been to a cancer center of any sort since my infusion on Dec. 30. That's the longest run of freedom I've had in quite some time. This is fantastic, but also puts a lot of pressure on me as I want to do what is "right" with this bonus time and I have no idea how to figure out what that is.

I feel like a fish who's been living in a teeny aquarium and has suddenly been carried in a clear plastic baggy and plopped into the big ocean without any idea how to handle myself. I'm too timid and still too weak to jump back into the school of other finned friends that's whizzing by. The hardest part is knowing that my time to backstroke through the pain-free tides is only temporary. It won't be long before I'm back to banging my head on the fishbowl glass. And oddly, there's a little bit of comfort in that because it's what I've come to know. I don't like that feeling at all.

All of this thinking about what I "should" be doing makes me very tired. This is what I mean by my New Year's intention of being more present and content. My eyes especially are very tired. I know that I don't sleep well and I have lost my ability to power nap these days. I cannot power my mind down. Even if I am incredibly fatigued and I have the strange blood coursing happening and force myself to lay down, I haven't been able to get past just closing my eyes. Incessant thoughts creep in and out and I can't escape to REM.

I decided that instead of calling them "naps," I will refer to these necessary downtimes as "siestas," which occur often in the Colombia-set novel that I just finished. Siestas sound so much more enticing, sexy, and purposeful. I will work to have more restorative post-lunch siestas. I told Sammy this today and she seemed to like the idea, curling up in the folds of my legs for a dog siesta of her own following our snowy walk.

The sinus/upper respiratory infection that I had been fighting has finally reached an end. I have only lingering drainage after it hung on for nearly two weeks. No more excrement of unnatural neon colors. What finally cleared things out in addition to the antibiotics was a Neti Pot – something lots of people had recommended I try. You make a solution then pour this little pot of it up one nostril while bending over the sink so that it can travel through all of your sinus cavities then drip out the other nostril. At first I felt like I was drowning myself. Once I got the hang of it, though, it was sadistically rewarding in the way that popping a good white head zit can be.

We've had a tremendous amount of snow here – more than 2 feet. It's beautiful, light and fluffy, peaceful, clean and crisp. I love it. I love walking in it, shoveling it, watching it cascade. It makes everything feel so fresh and new – a pristine white canvas ready to be painted.

I receive my next infusion at Sloan-Kettering this coming Thursday, Jan. 20. Until then, I'm continuing to fill my days with friends, family, reading, writing, exploring nature, cooking, wistfully researching international flights and writing retreats. I'm highly focused on getting strong and ready for that wee little thing that's still coming down the pike ... *transplant* and the weeks of hospital confinement that will follow it.

One step at a time. One foot in front of the other.

A Turnaround

In tandem with Linda's incredible strength and spirit, all of the collective prayers and positive, healing energy have made a tremendous difference. She is out of the ICU, now recovering at the hospital in very good spirits, breathing on her own and enjoying foods that don't come from a tube. Thank you for keeping her in your thoughts and for taking the time to send your healing energies her way.

A Call For Healing

The support and encouragement from all of you that follow this blog has meant so much to me on this journey. I have no doubt that it plays a huge part in pulling me through.

Tonight I ask that instead of sending all that incredible positive energy to me, that you redirect it to my mother-in-law, Linda Diamond, one of the most courageous and inspiring women to grace this world. She has been battling progressive multiple sclerosis for more than 30 years now and in recent years, a breast cancer diagnosis. Despite being quadriplegic and confined to her bed or mechanized wheelchair, she is by far the most positive person I have ever known, with the quickest intellect, biggest heart, and most fantastic smile. This past week, some complications and several infections came to a hilt, landing her in the hospital.

After further setbacks, she is now being carefully monitored in the hospital's Intensive Care Unit sedated and breathing through the aid of a ventilator. The hope is that in the next couple of days, the doctors will be able to wean her off of the ventilator and her lungs will have regained enough strength to be able to breathe sufficiently and clear any blockages on their own. We all have the deepest hopes that this will be the case.

Please hold her in the light and keep her at the forefront of your thoughts and prayers. Your healing, positive vibes are desperately needed and deeply appreciated. Please also keep my husband, Craig, and his brother, Eric, in your thoughts as they garner the strength to navigate this difficult time.

Forever thank you.