Saturday, January 29, 2011

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


  1. You have come so far and overcome so much--this drug will work and you will be living in your sister's immune system soon--we continue to support, send prayers and know you will beat this and be laughing at Mr. Lymphoma!!! Stand strong and never lose hope!! xoxo Bev & Blake

  2. Hi Karin, my name is Jen and my children go to your husband's school. I've been following your blog and praying for you and Craig every day. And every day I check for your blog to see how you are doing. You are so brave and strong and smart and your writing moves me. Keep getting better. Hang in there. :)

  3. Karin, you are brilliant and incisive and clearly amazing. that you could have such a complex reaction to that incident and describe it so holistically reflects this. BUT you are forgetting that some people are so mentally ill that they don't have any control over their lens, how they interpret the world, their negativity, their lack of appreciation of their existence. Mental illness IS physical so on some level your presumption that people can always just overcome negativity through sheer force of will, by choice, is problematic. It would be like someone telling you to just get over your cancer. that doesn't mean that contending with such people is easy at all or that you need to show compassion (which you actually do because you're amazing). i just think the creation of a binary here is somewhat tenuous and maybe a comparison of plights, unnecessary. on another note, i have a feeling an allo has a better chance than the 30% your doctor quotes if sgn-35 is what brings you to remission. to my knowledge, there is not yet a peer reviewed study of cure rates achieved by any of the monoclonal antibodies, followed by a CR and then an allo. it's just too early into the administration of the drugs themselves (before fda approval even) to get a large enough sample of cure rates of people who went through an allo after achieving a remission from monoclonal antibodies. my thought is that most people who need an allo have cancers that are usually less sensitive to traditional chemo so i just have this feeling that if you achieve a somewhat durable remission from the sgn-35, you have a higher chance of a cure through the allo. i pray you achieve remission and have a successful allo. it's more than just possible. in any event, keep writing. you are really extraordinary.

  4. Karin - I'm smiling at the image of you and Craig all wrinkled and very much still in love at 93. I love it. And you. "As we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others." How amazing that you do that for everyone who is lucky enough to know you. Judy xoxo

  5. You write so well. Maybe you don't want to read this but your illness is a blessing. I know. Easy for me to say but there's a depth to you that's unmistakable. That depth is at least in part a product of your struggle.

    You'll be in my prayers.

  6. You are truly an inspiration. Reading this post brought tears to my eyes but I can say that you're such a strong woman. Continue to stay strong and you will overcome this cancer. I have faith and believe that you will. You can only stay positive and positive things will come out of this. And you're not greedy in asking to live to 93...who wouldn't. I wish you the best with the transplant and I'm sure the outcome will be successful. Life is so unpredictable but we can only make the best of it with what we have. Enjoy every minute because you just never know. I lost someone close to me in a car accident in 2001 and I can say that it was the hardest thing I had to ever go through. It made me realize how precious life is and if I live to 30 or 50, I will not take a second of my life for granted. You will always be in my thoughts and prayers...