Thursday, December 31, 2009


It's the time of year where the news programs are filled with "year in review" segments, predictions for the future, look-backs and all. I have a lot to reflect on this year but in a different way. I've been thinking more and more about the things that I was doing just before I was diagnosed and it really just baffles me. Just a couple months before, we were in Miami living the life at a wedding. Literally, the week before I was admitted to the hospital I was running with Sammy full tilt on a hot day through the neighborhood. No matter how much I reflect, it still just doesn't make sense and I suppose it probably never will.

The oddest thing is this whole transition from patient to survivor. I use the "survivor" term loosely as I'm still not completely out of the woods. I've been feeling a lot of fullness in my chest and having the occasional pains still. That led to an echocardiogram, which was all clear -heart's still strong - and now I go in for another PET-CT Scan on Monday - two weeks earlier than scheduled. Hopefully this will finally be an all-clear and I can get this constant physical reminder that is my port o-u-t out!

But I digress ... . What's so different about being "post-chemo" is that I no longer have that "eye on the prize" goal. There was always that light at the end of the tunnel - the 12th treatment - when I knew it would be over. However, now that I'm past that, I realize that it's not over and that it probably never will be. It's the issues that arise during survivorship that no one really talks about. I didn't get any preperation about the long-term effects. I suppose that's because every oncologist has enough bad news to dish out to you having to explain to you the fact that you not only have cancer, but you have to go through hell to treat it - nevermind telling you that your body and mind will never be the same. That would have been way too much to process at the beginning of all of this - inevitable system overload.

But now, that drive, that hope, that ultimate goal has faded because there is no longer an endpoint. I will forever be wondering if the cancer will remanifest itself. I will forever live with the long-term havoc wrecked on my body. I was listening to The Stupid Cancer Show this week. The episode was focused on "Who the Hell is Hodgkin?" A lot of discussion was centered around how high the Hodgkin cure rates are, but how toxic the treatment is. I posed a question in the chat room to the show's guest oncologist telling him that I had 6 cycles of ABVD and asking him about the long-term effects I could expect from it. He gave it to me straight - fertility problems, neuropathy issues (I still can't feel my lower leg), chronic fatigue, predisposition to other cancers, hormonal imbalances ... the list went on.

That's the thing about being a young adult cancer survivor. I'm not 80 years old and cured. I am only 27 and I thankfully have many, many decades of life to live still. But you don't hear a lot about how the hell you're supposed to handle all of these effects as you keep on living. There is so much positive and so much that I am grateful for, but at the same time I've also found myself getting very frustrated and very emotional at times. Like getting a cast off after many weeks of healing, I guess I naiively thought that I'd be able to walk away from this and get on with my life. Instead, this is my new reality and I need to set new goals with that reality in mind.

I don't believe in New Year's resolutions, but I do believe that this time of year gives a good excuse for a fresh start. Right now the flakes are falling peacefully outside our windows and the ground is blanketed in pure white - everything is clear, raw, fresh and new. And that's how I want to enter 2010. Nothing like a bout with cancer to realize the precious, delicate nature of life and to really get to know and appreciate yourself. I am so eager to do a million different things that it's overwhelming at times. I know now more than ever that you only get one shot at life and one shot at making a difference and a postive mark in this world. I refuse to be ever be content with simply existing. Yes, I am grateful to be alive, but for me that's not enough.

There is absolutely nothing that I can do to reverse what the chemo has done to my body. But what I can do is not let it take me down, to not use it as an excuse, but rather as an added motivator to make the most out of every moment of this life. I'm going to keep on living despite the effects. I'm going to defy the odds and start a family. I'm going to be physically and mentally stronger than ever and I'm not going to be afraid. Every day I know I'll always have those questions in the back of my mind: Is this just a headache? Does this cough mean my chest is again swollen with cancerous lymph nodes? But rather than letting it control me, I need to accept it, awknowledge it and learn to deal with it. My life as of late isn't all Care Bears and rainbows, but it is sure as hell is better than the alternative.

Sunday, December 20, 2009

Selective Memory

I've been feeling pretty good. And the better I feel, I realize how badly I felt for a long time. It's amazing how your mind and body can just compensate and make the most of the situation no matter how much you're hurting. I guess that's how I got to be at such an advanced stage of cancer ... .

It definitely feels good to feel good. However, I certainly wouldn't say I'm 100%. I still get pretty tired at the end of every day and don't have my full pep back. Turns out it could take up to a year for that to happen. Other than that, I just get some occasional chest pain and a lot of chest tightness.

Nonetheless, everything still works. We went on a very, long hike today and once my heart rate leveled off I was fine and very proud of myself. I've had to do a full eyebrow shaping and am back to shaving my legs and underarms (the one negative in all of this)! My hair is now fully covering my head. So much so that tomorrow I'm going into work without the customary head scarf I've been wearing for so many months. You can still see my scalp a bit as it is very thin, but there are no more obvious bald patches. I can't believe how fast it has all grown back. It really seemed like one day eyebrows and hair just reappeared. It's not red and it's not curly like Shirley Temple as many warned it would be. But it is very dark and I love it. I suppose that this is in fact my natural color. I guess I didn't really expect it to grow back with vanilla blonde highlights.

I've been working a normal schedule and keeping up with the busy schedule of holiday parties, shopping, snow shoveling, Christmas tree trimming and everything else that comes with this season. It's very hard to even remember when I couldn't do these simple things.

But it all came rushing back when I had a follow-up appointment at the cancer center this week. I suppose this is what's going to happen for the rest of my life while I'm constantly watched for any signs of cancer coming back. Hopefully it will get a little easier as time goes on.

As soon as I walked into the waiting room it brought my right back to my treatment days. Vulnerable. scared. uneasy. lots of anxiety. But I was able to recognize the fact that this time I was there as one of the post-chemo survivors I had always seen bopping in for quick check-ups, hugging and catching up with the nurses. And that's exactly what I did. It was great to see the team even though doing so meant I had to get my finger pricked and my port stuck.

It was most surreal to see my oncologist. I got all welled up sitting there in his room waiting. I could literally feel all the emotions swirling back throughout me. I thought I was going to lose it and just start crying as I remembered my own journey and watched so many others pass by the door at various stages of their own. But I held it together and just felt so incredibly grateful to be there painless and with a clear head.

Dr. Dailey sat down right next to me in his little exam room in the Hartford center and he asked about my post-chemo progress. He felt my lymph nodes on my neck and collar bone, under my arms. All signs point to the all-clear. But even so, he still wants to do one more PET-CT Scan before removing my port. Sigh. January 15 is the big day. If the scan is completely clear then we schedule a port removal surgery and I'll then be followed with a CT-Scan every six months. We talked about planning a pregnancy around my scans (very romantic) as I can't be exposed to radiation while pregnant. He advises that we wait until at least next January to start thinking of trying to build a family to be sure that my body is strong enough and all the toxins are out of my system. It all sounds like a great plan.

Then it was in to see the nurse to have my port flushed. Since it's not being used, I need to come in every month to get some saline and special concoction pumped through it to ensure there are no chances of clotting or build up of fibrous tissue within or around it. So it was another deep breath and needle jab ... hopefully I'll only have to go through that one more time.

After that appointment it's been back to holiday happenings, and I'm very much looking forward to Christmas and Hannukah with the fam. So much to be grateful for this year ... the gifts of the season take on a whole new light. Like all the cards and commercials say, I really am looking forward to a happy and healthy 2010.

Wednesday, December 9, 2009

Celebrate We Did 'Cause Life is Short but Sweet for Certain

Wow. So from the beginning I've been saying that I wanted to host a huge-ass thank-you-for-helping-me-survive-cancer party and I can't believe that it happened. And that it exceeded all of my expectations.

We hosted the aforementioned huge-ass thank-you-for-helping-me-survive-cancer party last Saturday and it felt so good to be celebrating something. It also felt so good to see in person all of the faces behind the cards, casseroles, flowers, and messages. It was a little overwhelming (in a good way) to see them all at once. I've certainly gotten used to being overwhelmed, but this was the complete opposite end of the overwhelmed spectrum.

Even though it was the first snow of the year, we had more than 100 people turn out to celebrate with us. From co-workers and former co-workers to high school friends, college friends and middle school friends to my parents, brother/sister-in-law and baby nephew, and T'Ville neighbors, they came out in full force and Craig and I couldn't have been happier to fill them with delicious bar bites, good music and fantastic drink specials. They came from Delaware, Jersey, upstate New York, New York City, Massachusetts, Washington D.C., and all points of Connecticut.

The tavern we hosted it at was amazing. They even worked with us to create drink specials based on my chemo cocktail of ABVD. But for this night, instead of Adriamycin, Bleomycin, Vinblastine and Decarbazine, it was $5 Alabama Slammers (A); $2 Bud and Bud Lights (B); $1 off vodka drinks (V); and "Doctor's Orders - take 2 and call me in the morning" - 2-for-1 house wines (D). Much more palatable and makes for a much better party. Everyone there for the party even got a signature ABVD hand stamp for the night. Who knew chemo drug names would make you part of the "in crowd?"

The music was perfect. One guy and his guitar crooning covers of all my favorite artists. We even filled the dance floor late night singing our hearts out to Counting Crows, David Gray, Verve Pipe and Neil Diamond. Then the juke box came alive and the party was really pumping.

I bounced from group to group all night thanking each person profusely and taking in their congratulations and compliments while doing my best to swallow the lump in my throat. All I kept thinking was that each of these people took the time out of their own busy lives to think of us on this night and on so many occasions throughout this roller coaster of an ordeal. Not one day went by that I didn't feel this tremendous force of support around me and I know without a doubt that that's what kept me from falling on my face even when I was down on my knees.

From literally 15 minutes after I sent the e-mail announcing my diagnosis in May, a flower shop truck rolled up the driveway with a huge, gorgeous bouquet from my former co-workers that I immediately blubbered into. I knew right then that I would never be alone.

Yes, I'm young and I had to deal with cancer and its harsh treatments. Yes, it's an awful thing to go through. But because of it, I have been given the clarity to see what an amazing life I have filled with a wealth of amazing people. And the best part? I have my entire lifetime to pay that forward.

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.

Sunday, October 25, 2009

Chemo Day 12

For the last treatment there had to be a bit of excitement. My port didn't work again. I had to have blood drawn from my arm. They ran out of the normal needle gauge size. One of my four drugs was pulled from my regimen. We set off the patient alert alarm throughout the center and we forgot a bottle opener. But all in all, the final chemo session was as fun as a chemo session can be - if that makes any sense.

Both my mom and Craig were there with me for this momentous occasion. God willing, the last time I will ever have to sit in the chemo recliner. In fact, I don't know that I'll ever look at faux leather recliners the same ever again. I think they'll always remind me of long hours spent with my feet up waiting for the drugs to drip.

I think all three of us were a little bit loopy with excitement - so ready to celebrate that this routine was over, but also careful that not everyone in the cancer center was celebrating, knowing that for some, that day may have been just the beginning of their journey and I could only hope that it'd be as successful as mine. But we managed to celebrate on the sly, sort of.

I brought in Funfetti cupcakes for my life-saving team and made them all pose for pictures with me, much to their chagrin, I think. It's probably not a request that comes often, but I never want to forget the faces of the people that saved my life and made this hell a hell of a lot easier to bear.

We had an emotional meeting with Dr. Dailey. I got myself a little paclemped trying to thank him for all that he has done to keep me sane and healthy. We talked about next steps and follow-ups and scans - though that's all a little surreal. Because I have had a
persistent cough throughout much of these past few months and had just come off the bad cold I had been fighting, Dr. Dailey thought it best to omit the Bleomycin from my last chemo treatment. So instead, I got a three-liquor cocktail: AVD for my send-off. This is because of the concerns of pulmonary toxicity that can arise from the harsh drug. Its effects could leave me with long-term lung damage. He said he was 5% concerned that the bleo could have negative long-term effects and 0% concerned that omitting it would have any negative outcome on the effectiveness of my treatment course. I was sold. Plus, that shaved a half-hour off of the process!

Luckily, the three of us secured a private room as I think we would have been a bit too rowdy for the common areas. My wonderful nurse Diane came in to "poke my port" one last time.

"Ready. Pinch," she said. The usual routine. It hurt a bit but the needle was in.

"We're out of the small needles so I had to give you a 19-gauger," she said.

"Glad you told me that afterward," I replied. Very smart woman she is.

Big needle or not, my port was not coughing up any blood again. Drawing blood is a necessity of the process and my port just wasn't putting out. That meant a stick in the arm - sigh. For all I went through with fighting to get the port it was a bit frustrating that I'd still have to get stuck, but I was just grateful that it was working well enough to take in the drugs. I can't wait to get that sucker out of my body.

So my buddy Denise came in to do the dirty work. She gave me a stress ball to squeeze and left me with a Sharpie-drawn smiley face on my gauze strip which made me laugh like a doofy little kid. As I've said throughout this, it's the little things like that that really make all the difference. For the rest of the time as the chemo started flowing my smile was as wide as the one on my arm.

Craig, my mom and I talked and joked and reminisced a bit about the crazy ride it's been. Then suddenly this strange beeping noise starts eminating through the center. No one is sure what it is. Then Craig realizes he'd been leaning on the "Pull For Help" button. Apparently no one has ever pulled it because no one knew what the sound was for a good few minutes. Then all came rushing in and had a good laugh over it - Diane saying that was the most fun she had had all day.

We pulled over a table and played Scrabble SLAM - a new favorite game. Especially good for the chemo brained as it only deals with four-letter words - nothing too fancy. We threw out cards and yelled out words as Jack Johnson played in the background and the time passed. I sucked on my ice cubes during the push drugs and snacked on healthy treats to keep my nausea down.

I had just a few ounces left in the Decarbazine bag but could not hold my bladder any longer. I was so afraid that the "end-of-bag alarm" would ding while I was in the bathroom and I wouldn't get to celebrate with everyone. It was a race to the finish, but I made it back to my chemo room to hear those final beautiful, mechanical notes.

At that, it was time to pop the sparkling apple cider that we had brought. But
who knew it would be a pop top? Craig tried desperately to pry it open to no avail. Then once again, Diane to the rescue with a bottle opener from the back room --- for the tough days.

We cheerzed as Diane removed the needle from my port one last time and I was flooded with a rush of freedom. Thank God Almighty, Free at last!

I got all unhooked, said my goodbyes, and left without tears headed for a delicious post-chemo Bertuccis lunch. I don't think it all will hit me until a few months from now when the dust settles and the smoke clears and I can really look back and realize what happened to me and to every
one around me.

Until then, I'm just focused on getting better. That means more Neupogen shots. More scans. More bloodwork. A port removal surgery. I'll be working on piecing myself back together one step at a time.

Tuesday, October 20, 2009

Last-Chemo-Day Eve

You know that giddy feeling you got as a kid on Christmas Eve? The unsettled one that's burrowed deep in your belly? That's what I've got going on right now. It's the eve of my last chemo infusion - number 12.

I'm excited about it all being over. I'm nervous that it's not over forever. I'm anxious that something will go wrong and anxious about how my mind will react when this routine of doc appointments and pill popping is suddenly ripped away. I'm even a little bit sad to not being seeing my cancer center buddies multiple times a week. There's a lot of turmoil going on in my belly.

I've been what some may call manically happy over the past couple of days. I've found a long-lost bounce in my step - was even doing distance trials sliding across the wood floors in my socks while brushing my teeth last night and doing a whole lot of singing in the car. I cried a lot on my drive home from work today. Not because I was sad or afraid, but because I was (and am) so happy about life. The striking colors of the trees' leaves against the wispy white clouds and the deep orange October sun took my breath away. I felt so happy to be alive and to know that I'm going to keep on living and get to see this beauty every single day. I blared my favorite Rent songs until the car speakers shook, rolled down all the windows, cranked up my seat heater, and belted out every word as hot tears poured down my cool cheeks. I felt so full of life that it was truly overwhelming.

Part of me can't believe that I made it here; I never thought the day would actually come when I'd be crying out of pure, unadulterated joy rather than heart-wrenching pain. Another part of me feels like this has all gone by so fast and can't even remember the bad times. It's been the longest and shortest six months of my life all at once. And tomorrow I'm going to take that prize that I've kept my eye focused on all along - closing out the "dirty dozen" as one wise and witty co-worker phrased it.

I tried to recall how I felt the night before my first chemo treatment but remembered that I didn't have a "night before." It all happened very quickly. When the extent of my cancer was determined and the decision made that waiting for fertility procedures would be to risk my life, I was sent in to chemo that day. I had no time to prepare, no time to think. I was told to drink a lot of water as it'd be a good idea to be hydrated and that was that. Oh, how little I knew.

Now with 11 infusions under my belt I go in tomorrow as an expert in something that I never wanted to be an expert in. Unfortunately being an expert in the process also means that I'm an expert in the effects of the process. One last time I again have the aches, pains and uneasiness to look forward to, but the key words are "one. last. time."

Saturday, October 17, 2009

You Can't Always Get What You Want

But if you try sometimes, you just might find, you get what you need ...

Six months into this I'm still not sure what it is that I need, but I'm continuing to try and figure it all out. Right now, I'm still trying to come to terms with the first part of the lyric.

Today I was supposed to be at the UConn football homecoming game eating grilled sausage dogs off dirty coleman grills, drinking Octoberfest beers in a coozie shaped like a jersey and circulating the tailgating crowd to bump into friends from all different groups. Tomorrow I am supposed to be at the Patriots Football stadium doing it all over again - pro style. Instead, I am home with a head full of phlegm, a garbage basket full of yellowed tissues and a cough that just won't quit. Plus, the usual painful colorectal fabulousness that comes at this point in the chemo cycle. Yes, I am bitter.

I can no longer burn the candle on both ends like I used to. I guess one thing I have learned is that my body takes more precedence than I ever thought it did. My desires are mere dust in the wind when up against the demands of my bodily functions. I knew that being out in the cold for several hours was not the anecdote to getting myself past this virus. The last thing that I need to do is set myself back and not be well enough for my final chemo treatment - I think that if I hear the words "we can't treat you today" on Wednesday I may launch into a screaming fit - two-year-old tantrum style. So I made the responsible decision - not without much whining and even some tears as Craig left the house this morning for the game.

You'd think that I'd treasure time for personal growth and introspection - a good excuse to lay on the couch, curl up and watch a movie. Well, I hate it now. I've had more alone time than I can take. I want to be out in the world galavanting so, so badly. I feel like I've missed so many barbecues this summer, so many Octoberfests, so many chances to hike, to run, to travel to see friends.

Instead, I feel like "Bubble Boy" constantly worrying about getting sicker, catching some weird bug, eating raw meat that will send me to the hospital. As much as I love our home, sometimes it can feel like a prison. It's one thing to be tucked away for a weekend with a cold. Admit it, most of us secretly like getting a little sick because it gives you an excuse to just veg, read those books that you've had stacked up, catch up on DVRed shows. But when you've felt like shit for six months that guilty pleasure you experience is lonnnnnnngggggg worn off.

I know that someday when we have four kids, I own my own consulting business and the book deals are pouring in I'll be aching for alone time. But isn't that always how it goes? You don't know what you've got until it's gone, right?

So today I'm trying to focus my brain and take advantage of this time together with just me and me - plus the Kleenex and the germ-X. I'm headed out to get Craig's father's guitar strung and try to teach myself to play. I have some canvases to paint for our bedroom wall. I have LOTS of books to read and I'd like to try a bubble bath - I've never taken one in our house.

First, a walk with Sammy to get the creative juices flowing then to CVS for another box of Sudafed ... maybe a little shoe shopping and a Starbucks Pumpkin Spice lattee along the way ... maybe it's not so bad after all. There'll be more UConn football games, but never another chance to get myself back to peak health to give my body the best chance at standing up to this final shot of ABVD. What fun is drinking OJ at a tailgate anyway?

Thursday, October 15, 2009

The Urge to Run

This weekend was the ING Hartford Marathon and my dear friend Nicole conquered the half-marathon selflessly and amazingly. Not only was she able to run 13.1 miles through the city, but in the process she raised more than two thousand dollars for Leukemia & Lymphoma Society. I could not be more grateful for her drive and determination.

She ran with my photo on her back the whole way and I couldn't have been more proud of her. It's been very, very difficult for me to not be able to run like I used to during all of this. I'm far too weak, but to be carried by Nicole I felt like I was a part of something much larger than myself. She raced in honor of me and several others that she has encountered with her work with LLS and told me that anytime she was tired or sore she would think of what we were going through and keep on going. When I get better and try to follow in her footsteps I'll be thinking of what she's accomplished (a marathon last year only to come back after an injury to do a half-marathon this year - both times for LLS) to get through my rough spots.

Before I was diagnosed I was registered for an informational session about the Leukemia & Lymphoma Society's Team in Training to run the marathon this year. Well, in the ultimate of ironies, I'm on the receiving end this year. Now, when I am healthy enough to run and raise money for others because of Nicole I'll be able to know so much better what it's like to be on both sides.

This year the only running that I did was chasing after Sammy in the middle of all the action when she got off leash and ended up jumping into the Bushnell Park pond after barking up the police officers on huge Clydesdale horses. Ah, the adventures never stop ...

Despite that minor mishap, seeing all of the healthy bodies running for all kinds of causes or just for their own challenges was truly inspiring. I found myself choked up many times throughout race day watching people of all ages, sizes, backgrounds pounding the pavement. I was choked up at the devotion people have to the causes they were running for, at the way they honored others by pushing themselves to their own limits, and at the mere fact that close to 10,ooo people were doing something good for their bodies. Not having my health right now makes me appreciate the vast capabilities of the human body so much more.

Take It Day by Day

I've often quipped "I'm taking it day-by-day" when people have asked me how I am doing through all of this. It's not just a canned answer. It really is true. Maybe even more accurate is hour-by-hour.

I was feeling really great on Monday and Tuesday. This was unusual as traditionally those are my bad days after chemo (days 4 and 5 - Sun and Mon). This was also after the toughest round yet - this chemo round hit me hard and fast. I was a waste over last weekend, was very frustrated, even a bit angry, very achey, and spent a lot of time on the couch at my parents house and my own.

But I bounced back after the weekend and went to work in the office full days Monday and Tuesday. I was feeling so good Tuesday evening that I even had a delicious Long Trail Harvest beer with dinner. Then at about 8pm my throat started to swell and it was all downhill from there.

I woke up throughout the night Tuesday with bad sore and raw feelings in my throat and difficulty swallowing past my swollen glands. This is what I mean about living hour-to-hour. I wasn't too surprised as Craig had come down with a cold/sore throat virus a few days earlier but I thought I had somehow gotten away without catching it. No such luck.

When you get a cold and you have cancer it's quite a bit more alarming. Normally, I wouldn't even go to the doctor and just ride it out. But now I know that my immune system is very compromised and that the chemo kills the good cells that fight infections. So, you get pretty concerned over what to others is a little bug, but for me could be a killer. Right to the oncologist it was.

He said that because of my situation he would treat it like a virus and give me antibiotics which I was happy about. I was told to rest and drink lots of fluids which I'm trying to do. I need to get myself strong for my next - and final!!!!! - treatment. Not to mention the UConn Football homecoming Saturday and Patriots Game at Foxboro Sunday!

Must. Get. Better.

Tuesday, October 13, 2009

A New Line on the Resume

You can't beat the convenience of working in the hospital where you're getting treated, that's for sure. But at times it can create a strange colliding of worlds - worlds that I may otherwise want to keep separate. Today I went from a meeting in high-backed chairs in a board room with several key members of the hospital right to the cancer center where I slunk into a chair in the waiting room to wait for my shot with the rest of the patients. In my suit, heels and Hartford Hospital name badge I know that I stick out among the others.

Sometimes it's hard to let myself transition between those two worlds. At times I have to make a very conscious effort to pull myself together. Now that my treatment is almost over I get very sad seing other patients. I saw a woman yesterday in the cancer center who was my age with four young daughters and her husband there with her. The family was so adorable and her kids were running into the bloodwork room hugging the nurses and giving them pictures they had drawn. It nearly broke my heart to think of this woman going through all that I have while trying to stay strong for her little girls. I tried to stay focused on the story drafts I had brought with me to review while I waited for my shot but it was nearly impossible to hold back the tears. Even just being there for a quick shot you feel vulnerable and helpless. The Neupogen shots burn like crazy and leave me achey and sore but with a deep breath and a Band-Aid I get through it. I tucked the printout of my blood count paperwork under my meeting folder and headed back to my office - several squirts of Purell along the way. I've learned to swallow the lump in my throat, take my patient hat off, put my employee hat back on and get back in the groove. And I am so grateful that I have that opportunity. If my "patient hat" was the only one I was wearing during this whole experience I never would have made it.

I really never considered not working during my cancer treatment. From the moment I was diagnosed I knew that if I could physically do it, I would keep my life as "normal" as possible. Over these past five months I've learned that normal doesn't exist and I'm happy about that. Normal is boring. Instead, let's say that I've been able to keep my life as "uninterrupted" as possible and being able to continue with my career has certainly helped that.

I'm lucky enough that the type of work that I do -- writing, editing, design, websites -- can be done remotely and with the digital world that we live in I can feel like I'm still part of the team sending e-mails back and forth just as I would if I were actually in my office. And I'm lucky enough to have a boss and a team that are more supportive than I ever could have imagined.

Now that I'm in the home stretch I've been at the office more - being a little more daring with my immune system, less worried knowing that the cancer is gone. I'm realizing that I need to ease into things and go easy on myself. I do a lot of internal kicking of myself after I feel like I say dumb things or miss office jokes. It's hard to be patient with my brain which processes still a little slower than it used to. Multitasking requires more work. I'm looking forward to the chemo brain effects fading. However, having chemo brain has actually taught me to be more effective. I am more focused than I ever was because I am more conscious of being focused. I am more organized than I ever was because I'm overly paranoid about losing or forgetting something. I am more diligent in rereading, editing, giving a very careful eye as I have lost that (what could be hasty) confidence in my skills. I keep detailed "To Do" lists and file all my notes, which I continually go back and review. My writing flows much easier than it ever has - maybe becuase it's abit more liquid up there in my head. I also have a much better perspective. I'll never again allow myself to get stressed over finding the right words for a headline or because I can't get a webpage to render correctly - I now know what's really worth stressing over. Call me crazy, but I think cancer has been a good thing for my career.

The one part that is tough is being the hairless kid at the meeting table. I don't even think about it within my deparment, but it does set in when I meet new people I may be working on projects with. I have a feeling that the scarves I wear are a pretty obvious indicator that I've been going through cancer treatment, but I always wonder what people are thinking. Do they treat me differently because of that? Do they doubt my capabilities? Do they think that I had some fluke accident where I singed off all of my hair? Do they look at me with pity and think that I'm on my way to the grave? It's times like that where I question whether I should have gotten a wig, but I know for me that I would have felt more uncomfortable with that - always worried that it was crooked or didn't fit right. I feel awkward even wearing lipstick. I've always been the au natural/mascara-and-lip-gloss only type so I suppose it's appropriate that the same would go for my choice of headwear. The tough part is that my hair isn't instantly going to grow back when I'm cured. There are many weeks of scarf wearing to go ... .

Despite all of these insecurities, what I've found is that people don't even react. During all of this I have never felt that I've been treated differently because I have cancer, that I've missed any opportunities because I have cancer, that people shied away from me or gave me breaks because I have cancer. Maybe it's because I work in the most empathatic setting you could pick, amid doctors and nurses who fully understand the realities of disease. Whatever it may be I know that I am extremly lucky to have been able to feel accomplished and keep learning and growing in my career throughout this fantastical world that is "cancer."

Cancer does not mean that you have to end your life as you know it. Sure, you'll have to make some major adjustments, but it does not mean that you have to curl up in a ball and await your fate. It's amazing to have witnessed first hand the strength that we all hold within ourselves and this is what allowed me to keep doing the things that make me happy despite my disease. That's not to say that there aren't days when you can do nothing but lie in bed because, believe me, there certainly are and being in a ball is the best thing you can do for yourself. Any time I was feeling really low my Dad would tell me to "dig deep." I've dug deeper than I ever knew I could and discovered things about myself I likely never would have without facing cancer.

A fellow Hodgkin's patient shared with me something that someone told him: "cancer is a thinking man's disease." You have an awful lot of time to think about life, about death, about your place in the world. The key to making it out of it alive is to be able to keep those thoughts in check and balance the big thoughts with the simple ones - like how much I love ice cream. For me, keeping my mind stimulated (and distracted when the heavy realities become too much ) has been just as important in my recovery as the chemo meds.

Wednesday, October 7, 2009

Chemo Day 11

I always blog about my treatment day experiences several days after and realize that much is probably lost in the interim. So, because for some reason I have not been able to sleep after this treatment, I will write. Forgive if this makes no sense whatsoever and is riddled with bad grammar and punctuation. I blame the drugs.

Today was number 11. One away from number 12, the final infusion in my chemo regimen. That means I can now say: "Just one more to go!" That sounds much better than the days when six months and 12 treatments were set up as obstacles ahead of me. I've hurdled over nearly all of them and honestly, it's hard to believe.

This morning I worked from home for a couple hours. In fact, worked right up until the last possible second before I had to get in the shower and pack my chemo bags. Avoiding the inevitable, I suppose.

No funny chemo t-shirt today. It was too cold out this morning so a henley and a toggle tie wool sweater were in order. It turned out to be a wise choice, though when the sun came out it was much warmer. It was a wise choice because there was a lot of action in my port site today and the button downs made it that much more accessible.

Weight was stable. White Blood Cell count and granulycytes were very low as usual, but not as scarily low as before the last treatment. Blood pressure was good but heart rate was up. This was noted both by Denise (my fav lab tech) and Dr. Dailey but to no huge concern. My nurse chalked it up to anxiety. I hate to admit it, but yes, I did have a lot of anxiety today. In fact, I may have experienced what some may call a minor anxiety attack ... . It again goes back to the counterintuitive nature of chemotherapy. I might as well walk up to one of those beefy men who pull 18-wheelers via straps held with their teeth in those Strongest Man competitions and ask him to punch me in the face, then kick me around about while I'm wriggling on the floor - a couple of swift ones to the gut and the lower back. Of course I have anxiety about arriving there. Every time I know better what the effect will be on my body but yet I'm the one walking my body in. I almost lost my breakfast in my mom's car and then in the red bin full of discarded fluid bags and bloody gauze. My chest pumping "bring it on," "eat lighting and crap thunder" attitudes I used to plow into the Cancer Center with. Now it's more like "let's get this shit over with."

Our meeting with Dr. Dailey was again very positive. He checked my lymph nodes, noting that my neck is still lumpy and asymetrical but nothing to be concerned about. Many of the lymph nodes may be scarred from being stressed so wide when filled with the cancer and this may never heal fully. He also said that I may need to see a neurologist if time does not heal the dead leg I experience in my left shin/outer leg area. That's okay, I can deal with a lumpy neck and a leg that works, despite its numbness. He seemed very impressed with how my body is still responding so well to the ABVD. I had been expecting these last few to be the hardest yet, but they've really proven to be quite manageable - or maybe my expectations of what it means to "feel good" have just been lowered. Next steps: final chemo treatment Oct. 21 (big day, very big day) then another PET/CT Scan. In my last PET/Scan, though he declared me in remission, there is one area near my sternum that showed some "hot spotting," but Dr. Dailey is doubtful that it is cancer presence. We both hope that the spot is gone altogether in this next scan.

We were then escorted to one of the private rooms where my Mom and I got comfortable. My anxiety doesn't really go down until the port needle is inserted and the meds start flowing. That's when I can breathe a little easier and the nausea subsides. These feelings weren't nearly as extreme in the beginning. I think everything is just accumulated over such a protracted treatment regimen. My nurses' sighs as she was trying to draw my blood vials led my anxiety to new heights. Try as she might, my port just was not cooperating. Every treatment she draws blood for testing, in addition to the CBC finger prick that I get. My port was flushing well and accepting the pre-meds no problem, just not giving back. She explained that there might be a fiber or some clotting behind it. Despite how much she assured me that that's very normal to happen, I was pretty shaken up thinking about a clot traveling from my port site to my brain and leading to horrible things ... . But apparently those worries are unfounded and I'll trust the experts on their word.

Because the port was taking in the meds no problem that scene went smoothly. I get more woozy from the anti-nausea and steroid pre-meds. My vision blurs a bit and my processes slow. I get giggly and goofy and everything feels a bit off. Add to that my shaky hands and tight muscles as I unwound from my anxiety frenzy and the first hour was a bit rough. But my mom held my hand and relaxed me and I just kept apologizing to the nurse about what a baby I've become because again, Karin pre-cancer wasn't someone used to anxiety - nothing could throw me into a tizzy. Thank goodness for the visualizations and breathing I've learned in yoga that helped to get me back to reality.

We popped "Confessions of a Shopaholic" into my laptop – fantastic chick flick – and that really helped to pass the time from A to B to V to D to bag of saline. When the meds were done, we tried again to get some blood from my port. It spit and sputtered a bit but not enough to clear the tube and fill a vile. She had me lean forward, lean back, raise my arms, but nothing worked, so a needle in the hand it was. Luckily my nurse is fantastically steady and skilled at getting it in painlessly so I just turned away while she kneeled on the floor and I made a fist with my very sweaty hand. The blood was taken and I was free to go.

It took me a bit to stand up and get my bearings and I don't really know what I was saying when I was talking to the secretary to schedule my next appointments. Leaving there is like waking up groggy from an unexpected nap – the reaction time and processing speed are very sllllooooowwwweeed. This is why I do not get behind the wheel and instead rely on Mom to chauffeur me to CVS to pick up my take-home drugs then to lunch for whatever I may be craving. This week it was a hot chicken parm sub, but once I saw the menu it was a Caesar salad and spinach-and-gooey cheese calzone that did the trick of absorbing all the chemicals that were making me feel uneasy.

Usually I crash once I get home but it's now 8:45pm, I've been up since 6:30am and have not slept a wink. Lots on the mind I guess? I've been glued to the couch, watching Ellen then Oprah, doing lots of Facebook stalking. Then I ate more when Craig got home - some delicious homemade chicken soup my mom brought over. I feel on-and-off hot flashes, the room spins and blurs a bit and I have to proceed with caution on any attempts to get off the couch for fear of seeing stars or inducing nausea.

The body pains have already started and that just makes me sigh. Blah. I get these pains throughout my legs especially which make them feel very heavy and very tight. My hips pop and creak and my hamstrings and Achilles' tendon are so taunt I feel they could snap at any moment. These are the same hamstrings that carried me through a 15 minute run with no breaks on Sunday morning followed by a day on my feet at the fair. These are the same hips that bent easily into the pigeon pose at yoga Monday night. For the 11th time I again feel a bit beaten and broken but I know that it will pass for an 11th time.

I looked in the mirror on one of my many bathroom trips. The only time I don't have much of a choice but to look at my reflection. I look like a completely different person than the face that stared back at me this morning before leaving for chemo. My eyes are bugged out and glazed amplified by dark circles beneath them. My usual healthy color is gone and I look like one of those drug addicts you see on the made-for-tv movies.

Luckily, I have a husband and a dog that shower me with affection despite the fact that I look like a man with a very sad hair-loss problem, with a face that's a little green, the three-second memory of a fish and the attention span of a two-year-old. Right now they're each cuddled on my hip (those are my legs under the fuzzy blanket) and watching the Yankees game and I couldn't feel more assured that it's all going to be okay no matter what.

Wednesday, September 30, 2009

They Do Exist

Tuesday night I felt understood, accepted, befriended, appreciated, like I belonged. And I can only hope that's how everyone else felt as well. It was the culmination of a project I have been working on with my friends at the Helen & Harry Gray Cancer Center (where I am treated and at the hospital that I work at) and I'm Too Young for This!, a national foundation devoted to empowering young adults with cancer.

Throughout my entire cancer experience I have met one woman in the flesh with cancer under the age of 40. No matter what age you are, cancer can be hard to cope with and having no one else in my peer group to turn to didn't help matters. You're not supposed to be sick with a potentially deadly disease at the age of 27 - it just doesn't make sense and it's very hard when everyone stares at you with pity and wonder marveling at how young you are and why you're hooked up to a chemo drip.

I've found online communities to be extremely beneficial during all of this - especially because the language is catered to me, it's full of humor, yet also vitally important information, but it's delivered in a way that's not so ominous and straight-edged as many other cancer support sites are. I've thoroughly enjoyed the Monday night "Stupid Cancer Show" online and its connected me with some very informative factoids and resources. I've connected with other young adults through their blogs and social networking sites, but again, never met someone like me (an otherwise healthy twentysomething who is still living her life with cancer) in person.

So, I approached my friend Val who works at the Cancer Center and asked if we could put something together. She also knew about i2y and the "Stupid Cancer Happy Hours" that they host across the country and was all for doing one in Hartford - so was the Cancer Center's VP - and the rest is history. It was fantastic to get so much support from them and I feel lucky that I'm in a position where I can point out where there may be voids in our cancer program and to know the right people to go to to get them filled. We partnered with i2y and promoted the happy hour to all current and former patients in the 18-39 age group, along with the heavy promotions of the i2y group in the hopes to bring us all together. We built it. They came. And it felt fantastic to be a part of it.

Over the course of the night 25-30 young adults showed up - some currently in treatment, some years in remission, some with their friends, some by themselves. There were other women with buzzed heads and cute hats. Others with the tell-tale lady lump in the chest where their port lies. The conversations were so easy, so comfortable because you didn't have to explain yourself away - we were all there for the same reason - to celebrate our lives, dish about stupid cancer (and anything but), learn about each other's experiences, get inspired and of course, have a beer.

I met a young guy who had six biopsies before he finally got diagnosed. He has 43 radiation treatments to go and is working full-time as an investment banking manager. Like me working the IV machine, he stamps his own parking ticket at the Cancer Center valet stand.

I met two other Hodgkin Lymphoma survivors: one four-and-a-half-years in remission, the other one year ahead of me. It was so fascinating to hear what they went through, how eerily similar, yet so different our experiences were. One was told she couldn't eat any raw vegetables for fear of the germs they could carry, while I on the other hand have made that my diet mainstay! One begged for the port - in fact switched oncologists until one would give her one - while I shied away from it until I couldn't bear the vein pain any longer.

I met twenty- and thirty-something women with breast cancer, all positive, spunky, cracking jokes about puking, losing hair, going out.

I met another young guy who has undergone three brain surgeries and just recently discovered that a fourth malignant tumor has now grown. He traveled all the way from Danbury to meet others like him.

I met some who have ridden the cancer wave from pediatrics to young adulthood - the disease creeping in and out of their lives.

I met a man who was told that it was a fungus on his head caused from his hockey helmet (not cancer). I met a woman who took four months worth of antibiotics (of course, not cancer) before it was finally her dentist who diagnosed her with lymphoma.

It was such a breath of fresh air to see young spirits fighting against all of this and able to be out in the world, to be positive, to know that it's still okay to meet new people, to be at a bar, to snack on nachos and pigs in a blanket even with the dreaded cancer we all hold closer to us than we probably would like.

The difference in talking with these people was that they get it. I love my husband, my friends, my family, my doctor, the older patients that I've met, but no matter how much they try, they can't fully grasp what it's like to go from being a blonde-haired, successful, running, hiking, biking, carefree twenty-something with big plans for the future to a bald, weak, lethargic twenty-something fighting my hardest against an invader inside my own body. I hope those people that I love never have to understand what it's like. But for those of us who know the realities, it's nice to be able to talk to each other without abandon, to not have to worry about offending someone or making them feel uncomfortable. I could look these other young adult cancer patients in the eyes and without saying anything, completely understand each other's mix of pain and elation to be standing there in that moment. One woman thanked me repeatedly for helping to make the event happen, saying that it was exactly what she needed. It felt so incredibly good to be able to turn something as awful as a cancer battle into something positive for myself and hopefully many others to come.

The cause to advocate for young adults with cancer was illuminated more than ever for me. It's so important for everyone my age to realize that unfortunately, yes, we can get cancer too, and when we know something isn't right we need to be persistent, listen to our bodies and take care of ourselves. How I got to be a stage 4b cancer patient I will never know, but I only hope that others will learn from my story and pay attention to the warning signs. We tend to think we're invincible, we can take on the world. No time for sickness, for naps, for pain ... just push through. We've got careers to conquer, charities to start, countries to visit, families to create. Who has time to be sick? Well, it all comes to a screeching halt when you're standing in a dog park with an empty leash in your hand and the voice on the other line of your Blackberry tells you you have cancer and your life changes forever.