Sunday, November 29, 2009


I plucked my first out-of-place eyebrow hair.

I filed away the last of the blood count reports floating around our office.

I threw out the leftover steroids.

I took down the calendar which held the lists of doctor appointments and documented how I felt each day.

I twisted my hair around my finger. Well, half-way around.

I crumpled up the hand-written notes from my mom with directions of when and how much of which medicines to take each day.

I'm transitioning from cancer patient to cancer survivor. In fact, this past couple of weeks, I've really forced myself to forget about the "C" word altogether. I think I've really been squelching it all, excited to be feeling better and getting back into my old routines. However, no matter what, I know that this experience will forever be a part of me and I don't want to forget it. I think I just wanted to tuck it away in my back pocket for a little while. Now, I'm ready to reexamine it all and see how I can use it to better my life and the lives of others. I'm going back to figuring out that still unanswered question of why the hell this happened to me ... .

I'm waiting for the big flood of emotions or whatever is supposed to happen when I actually realize everything that I, and those around me, went through. Right now it just seems like it was a little bump in the road, a chapter that is now closed. It's hard to even recreate what my mind and body felt like. I remember people telling me that would happen back when I was first diagnosed. Telling me that one day this cancer experience will be just a little blip in my life and that I'll have so many bigger and better adventures that will overshadow it. I found that hard to believe at the time, just as it was hard to believe that I'd ever reach the 12th treatment. But now that I'm here, I realize that the world keeps moving and that there's a whole lot of life still ahead of me.

Even though I don't think about it constantly as I used to, I am still frequently reminded. Of course, there's the givens. The lady lump is still in my chest. It seems that the skin discolorations on my body are permanent, and oh ya, I still don't have enough hair to cover my head. But there's also the unexpected reminders.

Last night we were out at a tavern enjoying some beers and a live band with friends. I go to the bathroom and this 60ish-year-old woman with long, peroxide bleached blond hair, teased bangs and L.E.I bellbottom jeans starts to explain to me why she has a heart painted on her face (her grandson), keeps talking to me while I'm in the stall, and after I'm done washing my hands and she's done drawing on her Barbie pink lip liner, reaches her hand out to shake mine and introduces herself.

"I'm Karin," I replied, wiping my hands on my jeans and shaking her hand.

Her eyes widened.

"That's my sister's name ... ," she said.

I nod and mumble back something about 'what a coincidence' and make my way to the bathroom door.

"She just died of cancer," she said and I spun back around.

I hesitated at first, not knowing what to say, then blurted out: "I just beat cancer. I just finished six months of chemotherapy." As soon as the words came out of my mouth I wanted to take them back. I couldn't believe how mortifyingly insensitive I was, but her reaction completely surprised me.

She grabbed me in her arms and pulled me in for a tight hug. I was immediately engulfed in the scents of Aquanet hairspray and gag inducing flowery perfume.

"What? Oh my God. God bless you, child," she choked, going on and on and on. "That's amazing! Oh, that's amazing!" She kept kissing me on the cheek - several times. I'm just awkwardly smiling back thinking, I am in a bathroom, with other people doing their business in the stalls listening to this. I thought I was just going to take a leak and I end up sending this woman over the emotional edge.

"I'm sorry about your sister," I said back.

She just replied with more sighs of happiness and more awkward touching. She squeezed my hand and we reentered the bar. I plopped back down at our table and immediately recounted my bathroom experience. Then I watched as this dolled-up Grandma headed to the dance floor to slink around to the beat and rub up against her much younger looking boy toy and I smiled.

It's like I'm now forever part of this secret society. For those who have been through it or watched someone very close to them go through it, you have this instant rapport and understanding. That's something that I feel very lucky for - to have the capacity to form these instant human connections. So quickly comfortable that several smooches in the ladies room at a divey bar are perfectly appropriate.

Thursday, November 19, 2009

I Can Breathe Again

My CT-Scan showed no evidence of any tissues masses, enflamed lymph nodes, or anything that may indicate that cancer remains (or is emerging.) Needless to say, fantastic news. This scan is much more conclusive - they took 64-slice imaging of my chest to get a very, very detailed look at anything that might be going on there there's nothing but the normal chest innards.

Now I can stop planning what I thought would be another six months (at least) of hell - or my own funeral arrangements - and get back to planning my future. Most immediately that means Thanksgiving - that holiday now has a whole new meaning beyond the chance to gorge on butternut squash. Then my favorite time of year - Christmas. And I can now confidently say that I'll never have to have a Christmas with cancer! I'll have a Christmas with a port in my chest and a very strange hairdo ... but no cancer! After the New Year I'll have another PET-CT Scan and as long as the results are again clear, I can finally schedule the port removal.

After that? Running a half-marathon, enrolling in grad school, mastering the tripod headstand, writing a novel, volunteering to help others going through this, mentoring, tackling a triathalon, traveling the globe, starring in community theater productions, learning the guitar, taking an African safari, promoting world peace ... you know, the little stuff. At least I can get back to dreaming about it all now without cancer clouding the way.

Tuesday, November 17, 2009

The Waiting Game

I don't want to play it anymore. Let's put away the cards, fold up the game board, drop the player tokens into their mini plastic bag. I am not good at this game and I want to quit.

It's funny how when you're trying not to think about something, the only thing you can think about is trying not to think about it – and that really leads to thinking about it now doesn't it? It's only been four days since I found out about the area of question in my PET-Scan but it feels like forever.

Of course my mind is a bit out of control. I'm hoping with everything I have that this is just inflammation from my longstanding cough but I also have that awful feeling in my gut that it's not. I keep trying to squelch those feelings but they keep creeping up. For some reason the idea of having to go through a stem cell transplant was something that I always thought that I'd have to do - I have no idea why and I hope that I am dead wrong.

There is not a damn thing I can do to speed up this process. I had a CT-Scan today which might give some insight as early as late-day tomorrow. I got yet another IV. The dye inserted for this test warms through your entire body, makes you feel like you just peed your pants and gives a distinct metal taste in your mouth - quite enjoyable. I laid there, again with my arms over my head, and listened to the robotic man's voice tell me when to hold my breath and when to let it go. Now I wait some more to see what this 64-slice scan shows going on in my mediastinum.

Maybe the spot won't show up at all. I just have to resist calling my oncologist every hour to check if the results came in. I think calling at 4pm is fair – that's 24 hours – I should at least just check ...

Saturday, November 14, 2009

In Flux: Cancer or No Cancer?

Getting a phone call from your oncologist on your office phone in the middle of the day is a little unsettling. Getting the call the day before you have a scheduled appointment with him to go over your PET-CT Scan results is a bit more worrisome. When you pick up and he tells you he'd like to meet with you to go over things ... and that you might want to bring along your husband or mom, that's really not a good sign.

I was expecting to receive the results of my first post-treatment PET-CT Scan on Friday, the 13th - "boldly" (in the words of my oncologist) scheduled on this superstitiously day of oddities. However, I got the news a day early after Dr. Dailey found some concerning results.

He called me at work. For a fleeting moment I thought (hoped) that maybe he wanted to alert me to something happening at the cancer center that I should include in the hospital newsletter. That faded quickly when he told me that he got my scan results back and had shared them with several colleagues in the cancer center, an expert pathologist, a noted thoracic surgeon at the hospital, etc. I know that you don't go around displaying perfectly clear scans across the hospital.

The long and short of it is that there is what is called a "hot spot" that appeared on my scan. It shows up in my anterior mediastinal tract (between my lungs) more toward my heart. "Hot spots" are how oncologists find if and where cancer is lurking in your body. I was "hot spotting" all over the place in my initial scan ... "like a Christmas tree" I believe the wording was. The good news is that this particular "hot spot" is only a centimeter large and it is the ONLY area of activity on the entire scan. The even better news is that the probability of showing a false positive on these types of scans is very high. The PET scan shows anywhere that there is high metabolic activity - something that cancer cells display, but also something that other tissue inflammation or swollen lymph nodes (without cancer activity) can display.

The area is too small to be able to perform a successful needle biopsy to pull out the tissue to test it in a minimally invasive way. The only way to know definitively if it is in fact rogue Hodgkin's cells that were able to withstand the 12 ABVD treatments would be to undergo a surgical biopsy. Because of the small size of the area in question and its close proximity to my heart and major vessels and the need to go through my chest cavity, the surgery carries quite a risk. My oncologist and the several other physicians across a wide variety of practices that he consulted agreed that surgery should be avoided until we have a clearer picture of the likelihood of this actually being the start of a Hodgkin's recurrence.

Naturally, this was not the news that I wanted to hear. Luckily, Craig was there with me. We met at the Avon office - there was no one else there but us and my doc - it was so intimate that he wasn't even wearing his typical white lab coat. It felt like meeting with an old friend who unfortunately was delivering what could be some very bad news. It was eerily dark and quiet except for the bright fluorescent lights of the room that we were in. It was late afternoon and Dr. Dailey took the time to meet with us, explain everything in detail, and answer, mostly Craig's, many questions as I just kind of sat there in shock. It took me back to my first day of chemo when everyone around me just sounded like the parents on the phone in Charlie Brown - "wah, wah wahhhh."

We are all hopeful that it is nothing. I am still fighting this upper respiratory cold/cough that makes me sound like someone on the other end of a 1-900 number. We're hoping that that might have something to do with the hot spot. That the infection could be causing the inflammation in my chest, causing it to light up with the diodes. However, I am so lucky that I have a doctor that takes things seriously and is looking at this scan thoughtfully and carefully. As much as he apologized for not being able to give the "all clear" and schedule a date for me to get this damn port removed that he knows I am anxious about, he told me that he just couldn't comfortably say: "Ah, it's nothing. We'll see you in a year."

So, the plan of attack is get me healthy - get this bug out of my system. I'm now on a new antibiotic, a 10-day course and am continuing with the prescription cough medicine. I'm trying to get lots of rest, maintain my healthy diet and keep up with the yoga and walking as much as I can. The hope is that by doing this, on the next scan, this little hot spot won't rear its ugly little head.

Monday I go in to get my port injected with a type of solution that will hopefully break up any kind of fibrous tissue that might be causing a blockage that is not allowing for my blood return as God forbid, I may be needing to use this thing a lot again. Then Tuesday I have a detailed CAT Scan which is going to take fine slice pictures of the area in question to try to get some better clues as to what it may be. Then, in 6-8 weeks I enter the narrow tunnel for another PET-CT Scan. If this reveals that the spot is still there (or even worse, has grown), then it's time to slice me open to get in there and biopsy a good chunk of the tissue. If it is cancerous, the next step is a high-dose chemotherapy regimen called "ICE" then onto an analogous stem cell transplant with a chemo cocktail of "BEAM" ... the science of all of that blew my mind and as Dr. Dailey assured us, to even think about it as this point is jumping the gun. Here's hoping for a false positive.

So now, my fate is awaiting the identity reveal of this one-centimeter hot spot. And, I won't know if I'm cancer-free anymore for another several weeks. What can I do but do everything to keep my mind off it, keep my body strong, and stay focused on the fact that it's got to be a fluke?

Thursday, November 5, 2009

Why I Am Fortunate

I do not have chemo this week --- and fingers crossed, never ever will again.
That is an amazing feeling after 24 weeks of the same routine. Instead of my eyes bugging out, my stomach wrenching and my head spinning, I am drinking a Bud Light Golden Wheat, eating Whole Foods white pizza and watching trashy Access Hollywood after an accomplished day at work. Except for my torn calf muscle from delving back into heels too quickly I'm not even thinking about how my body feels.

I felt that little gum ball in my armpit.
I can picture the moment clear as day. I was adjusting my position on the couch and felt a strange tug under my arm. I felt where it was hurting and detected this hard, little ball that I could move back and forth. Craig felt it too and I think in that moment we were both hoping that it was just a knotted muscle or something else that could easily be written off. Then I felt another lump behind my ear - again, thought it could be a swollen bug bite or something. Ironically, I had a routine physical scheduled for the very next day. I showed the lumps to my PCP and it all spiraled from there ... more lumps kept appearing and more and more tests were ordered.

My doctors took me seriously.
Though it took some time to figure out what was wrong with me, my PCP never made me feel like a hypochondriac, like a complainer or like someone who had no idea what she was talking about. Every time I called her to tell her I found another lump, that my leg was going numb, or that I was increasingly fatigued, she brought me back in for more evaluations - blood tests, breathing and heart rate tests. When I called to tell her that I couldn't move my neck because it was so painful and swollen she immediately sent me to the ER. There I also lucked out with a physician on duty who immediately saw to my needs and got me on the tract for evaluation, admission and biopsy surgery. She matched me with my oncologist, a man that I have the utmost respect for.

I'll never forget when he came to introduce himself to me while I was in the hospital awaiting my biopsy. Oddly, I remember him telling me that I had very nice hair and that I shouldn't be worried, most of the time it just thins ... . I immediately felt comfortable with him as he crouched by my hospital bedside and calmly explained to me what my biopsy would likely reveal, what Hodgkin's Lymphoma was and what the next steps were. With my hacking hospital roommate listening through the thin curtain, my doctor and I discussed it all. I remember his voice being so calming even though the words coming out of his mouth were the most distressing I had ever heard in my life. That calm voice continued for six months. He listened intently and thoughtfully answered every single one of my questions along the way. He was always positive, always encouraging, but also realistic. He would call me back within hours. He set me up with the best doctors to talk about fertility and colorectal issues. I never, ever doubted his expertise or felt like just another patient.

I've heard so, so many stories of young adults especially fighting awful battles with doctor after doctor aching to find someone to take them seriously. Let alone, find someone full of an incredible amount of expertise and compassion as I found. I did not have one bad experience with a member of the medical staff that cared for me. In fact, they made me feel like I was one of their own family members they were caring for every step of the way.

I got the chance to stare death in the face.
This is something that many people never get the chance to do - let alone someone in their twenties. At age 26 I've been afforded the chance to truly understand the delicateness of life. To truly understand that our time here is only temporary and you never, ever know when that time will be up. There's an immense amount of lessons found in that. Going through what I've gone through I'm no longer scared of dying. I don't want to die - I want to live until 127. But if I did die tomorrow I can say that in my short life I had the chance to truly appreciate how good I had it, how amazingly beautiful life is and how exceptional the people in my life are. When people think you might be dying, you suddenly learn how much you've meant to them, to people that I didn't even know ever thought of me. That's something most people never get to realize. I had NO idea what effect I have had on people's lives and now having learned that, I'll forever be conscious of much my actions can leave an indelible mark on someone forever.

My hair gets a fresh start.
After years of spiral perms, boxed hair dye, Sun-In, highlights, highlights and more highlights, peroxide bleach, and awful haircuts, my hair will grow back with a fresh start. Maybe I'll leave it alone now.

I truly know what it feels like to love someone.
I don't think you can truly understand that until you're faced with the prospect of losing the ones that you love. My heart has been so full during all of this. When I see my husband I have such a newfound respect and admiration for him. We've been together for nearly 10 years --- since we were 17 years old. I loved him then and always, but the love that I feel now is something that is so deep it is hard to define. I was so worried about him during all of this. He always held it together. He always calmly handled me when I was off the handle. When I wanted to get out, he took me out, no matter how tired he was. When he got together with friends and I felt to sick too join, he'd call and check on me throughout the evening. We used to be a dynamic duo - best friends always doing everything together - with gusto. I know it was hard for him to lose his partner in crime to the couch over all these months. This is a man whose father died in his arms after a long fought battle with brain cancer. He does not deserve to have to watch his wife battle as well. But he did it, unfailingly. He confessed that every night he slept with one eye open - always checking to make sure that I was breathing, that I was okay.

And my parents ... oh, my parents. They were there for me in a way that was unfailing, genuine and perfect. They were never overbearing. But when I wanted it, were there to grovel over me hand and foot. They respected my decisions. They never questioned my choices to do, or not to do things. My mom especially did so well with dealing with my independent, "I can beat this" attitude see-sawing with my mental breakdowns and teary phone calls. The day I got the news that my biopsy showed malignant cells I was alone at the dog park. My mom knew I was alone and even though I told her that I would be fine waiting for the call on my own, when I pulled into my driveway she was sitting on my porch with lunch. I'll never forget how good it felt to be able to explode with choking tears into her arms as I relayed the news. Sometimes moms know what you need better than you do yourself. I am so, so lucky to have parents that love me so much and that I love back with all my heart.

And my friends. When I think about them now and all they did to help me through this I can literally feel my heart fill up. Even if it was just voicemails that they left or passing e-mails. I never, ever felt alone. I have so many people that if I needed to, I could call and they would be there for me at the drop of a hat. To know that the option was there is the greatest gift that's come out of all of this and it's made me want to be a better friend to them.

And I can't forget my dog. I'm not going to go out and buy an "I Heart My Labrador Retriever" t-shirt with a bedazzled dog face or anything, but boy do I love my Labrador Retriever. She was - and still is - right by my side, cuddling her 60-pound blonde body into my lap or clicking her nails on the wood floors following me everywhere I go. She gave me companionship when I didn't have the strength to talk to or be around anyone. The licks from her hot tongue and her constant nose nuzzles did more than any chemo drugs ever could to melt my tumors.

I've rekindled my love for writing.
It's been a release and a solace during all of the pain, confusion, and the torrent of emotions.

I've learned to find my health, despite disease. Health is a mindset.
It's all relative. I learned to make the most with what I had and gained the ability to adjust my standards of what "feeling good" felt like. Now that the chemo is leaving my system and I'm feeling better each day I'm realizing more and more how awful I really felt. But in those moments I rejoiced on the days that I could get out of bed, when I could take a deep breath, when I could think in full sentences. When my body was not healthy, I found a way to make my mind healthy. Strength of mind had to come before strength of body.

As I regain my physical strength, little things are such big things. I can chew gum again. My jaw has been swollen and locked for months and I couldn't chew tough foods on the right side of my mouth, nevermind chomp on and smack gum. I forgot how much I missed it and can't wait to continue with these little discoveries of things I forgot I've been compensating for.

I got a medical education.
I now know all about the lymphatic system, white blood cells, stem cell transplants, chemo drugs, port-a-caths, scans of all kinds, blood tests of all kinds. I know a whole new language that I've found to be fascinating.

I came out of this relatively unscathed.
All my body parts are intact. I only lost one lymph node that was stuffed with cancer anyway. Yes, I lost my hair - from my head, nose, legs, eyebrows and armpits, but it will grow back though I certainly haven't missed shaving and plucking. Razors are expensive anyway. I'm left with a scar in my underarm and there will be more when my port is removed. But to me, those will be permanent reminders of what I survived. And that is okay. It's very important to me not to forget. There are other residual issues like neurological damage to my leg and an angry colon that still hasn't healed, but that's nothing.

I know what I am capable of.
And it's a damn lot.

Sunday, November 1, 2009

Recovery - for the 12th Time

Eleven days later I can say that I'm most certainly on the way to feeling like myself again. To add insult to injury, the post-infusion effects of the final chemo treatment were the harshest and most debilitating of all 12. The five days immediately following it took every ounce of mental, physical and emotional strength to get through. There's that myth about trying to squeeze water from a stone - that's what it felt like. My body and mind were tapped out.

My Body:
Angry. Ravaged. Abused. Beat Up. Hurt. Achey. Pissed. Tired, so very, very tired.

I thought that maybe because I only had three quarters of the drugs that I normally have that the side effects would be one quarter easier to take. That was certainly not the case - I've never been good at math.

After the excitement of being done with the last chemo session wore off the side effects set in and it was a rough few days - the roughest yet. My body was lashing out at me, not understanding why I would subject it to this ... again. I truly don't think it could have gone through another treatment. Now I know that if faced with it I could handle it, though in those moments of pain that was hard to fathom. Luckily, there are no more ahead of me.

I could do nothing but sleep. Sleep was the only thing that kept the pain away. Though sleep wasn't restorative or healing, it served as a rest from all the angry bones, blood and muscles. The night after my chemo session Craig kept waking me up with fear in his eyes concerned that it was the end --- I was extremely clammy and sweating but felt freezing cold to the touch. My body temperature was low and I kept breaking out into cold sweats. Even Sammy was highly concerned, trying to jump up on the bed to be with us, something she never does. Craig was ready to take me to the hospital and I was so out of it that what was happening to my body didn't even phase me. But like always, with time the battle calmed. And every day after that brought more strength and less hurt.

Today almost two weeks later I don't feel any bone pain. The cough still lingers but is less debilitating. My energy is increasing - enough to get back to yoga and small doses of jogging.

My Mind:
Discontented. Confused. Distracted. Cluttered. Overwhelmed. Tired, so very tired.

I was an angry person in the days following my last treatment. I lost my get-up-and-go. I lost the positive push that carried me through all previous 11 recoveries. I had a lot of crying bouts so frustrated with feeling foggy, disconnected and helpless. I could do nothing. Even though my body forced me to be on the couch or the bed, my mind couldn't rest - it kept slithering to bad places thinking about cancer recurrences, thinking about my upcoming PET Scan, not being able to comprehend that this was going to be over and that I would never have to do it again. I couldn't read. I didn't feel like talking to anyone. All I could do was stare inactively at brain rotting television shows - the only thing that could keep my mind off it's negative course.

But like my body, my mind recovered. I worked - in the office - for four days straight. We traveled to see our baby nephew this weekend. I am actually now writing again and looking forward to reading a new book. Things are looking very high up. I'm no longer afraid of my own mind. I'm now able to realize in fact how strong it is and how without its strength I never would have gotten through this. I'm full of happy thoughts again - thinking clearly, soundly and breathing easily again.