A Complicated Relationship

Hope you enjoy reading my latest piece for The Huffington Post's Generation Why Series: "A Complicated Relationship." This essay personifies the cancer within me and focuses on the diseased relationship I have with this toxic lover that's got a stranglehold on me - the stuff of daytime television drama.

If it sounds familiar it's because it's born from a blog entry I wrote back in 2011, when recently out of my allogeneic stem cell transplant and learning what it was like to be in recovery, thinking that my cancer relationship was finally over. With this reworked piece, I honed in on our complicated relationship status and reworked it to focus on the continued stresses my lover brings.

As always, if you like it, please share it on your Facebook pages, "Like" it, Tweet it, comment here or on the Huffington Post page itself. I'd love to hear your thoughts! Thanks for reading.

Q: Will I Live or Die? A: Yes.

I am going to die. You are going to die. Every single one of us is. No one is invincible. Death is the only real guarantee in life. It’s what we do with that reality that matters. It’s when tragedies like that in Aurora, Colorado happen that these existential questions come to light. It’s a time to contemplate and evaluate and appreciate the reality of life and death. As many were, I was deeply affected when I heard the news of this unthinkable act. What human cannot pause and think about what something like that means for their own lives and the world at large? It’s something far too important to turn our heads at.

For me, it brought up a lot of questions: Why them and not me? What’s it like to be gone in a shocking instant versus someone else that has a long-term terminal illness? Is one ever preferable over the other? What is worse for the victim? How about for those they leave behind?

Why am I, with a body that was full of lymphoma from nearly every lymph gland right through to my spleen, now not just surviving, but I believe thriving, while a six-year-old out for family night at the movies had her life cut short at the hands of an erratic and disturbed gunman. These questions are unanswerable.

Would you want to know when your day will come? What would you do with that knowledge? It’s a nagging that fellow longtime cancer patients and I carry with us daily – for better or worse. Most of us long to live. But this can't be said for everyone. I’ll never forget the time in the Emergency Room when after finding out I was a cancer patient, a man told me I “am lucky because most of us are trying to die.” I am not trying, and I’d venture to guess that those there for the midnight Batman screening were not either.

When the Dalai Lama was asked what surprised him the most he replied: "Man, because he sacrifices his health in order to make money. Then he sacrifices money to recuperate his health. And then he is so anxious about the future that he does not enjoy the present; the result being that he does not live in the present or the future; he lives as if he is never going to die, and then he dies having never really lived."

Surprise: we are all going to die. Like those in Colorado, some seemingly too soon and too tragically, but it does not change that reality. When I really look at it, am I more likely to die than anyone who drinks away their weekends and smokes a carton of cigarettes a day? Would I have been any more likely to fall victim than the positive and driven sports blogger who had already narrowly escaped another random shooting? No, I don’t believe that I am.

Okay, maybe my red flags are a little brighter than others, but we’re all waving them: whether it’s the massive amounts of stress we’re under, underlying disease, environmental factors, risky lifestyle choices. There are arteries clogged, communicable diseases acquired and fluke accidents happening every minute of every day. My risk factor just happens to be cancer, which is why I have to be so much more conscious of keeping the other risks low.  

To be able to wrap my head around that has allowed me to feel better integrated with the world around me. I am not unique in facing death. It can and will happen to any one of us at any time. I just know my enemy in advance unlike the nightmare that these 12 innocent victims had no opportunity to process amid shear chaos. By no means do I have contentment about it all the time; it is certainly a practice. Yes, I have a disease that will potentially be the thing that kills me. But something will kill all of us. That doesn’t mean to live in fear of it, but rather the exact opposite.

I wrestle a lot with the immediate question: Am I going to live or am I going to die from this? As my therapist once so perfectly responded: “The answer is ‘yes’”.

Because of the state of my disease I have to live in the present, unable to plan too far for the future. I have what can be seen as an opportunity that others don’t get to because they are too afraid to think about it or be conscious of death. I don’t have a choice in the matter really, but I can only hope that others will see stories like mine, and those of the beautiful lives lost in this massacre, and also be able to come to that realization that we get just one chance – in this lifetime anyway.

It doesn’t mean that we need to think about dying all the time, but I do believe that we should think about living all the time. Living has different meanings for everyone, but it’s about finding whatever that authentic path is and running with it.

Of course it doesn’t – and shouldn’t – take a life-threatening disease to come to acceptance of this. I think it comes with age as well as we all move past the blissful unawareness and invincibility of youth. Diagnosed at age 26 I haven’t been able to stay unaware as long as most, but I feel that that has been a gift to me. It has given me the opportunity to feel the full gratitude of what I have and to look at the brevity of it all in the face and decide what to do with it. That carries both an immense weight and freedom with it.

Craig told me that he remembers me saying a few months before I got sick that if I died on any given day I would die happy with the way I lived my life. I agree even more whole-heartedly today. I am happy with the adventures, the challenges, the love, the beauty I’ve experienced. I want more of it and I lust for it, but it’s not that I’m trying to avoid death now because that is inevitable. It’s that I’m trying to make the most of this life, this body, my relationships and the mark I am making here.

I want to be clear not to give my cancer credit. I do not believe that having cancer transformed me. I do believe that it enhanced what was already there – the good and the bad. I didn’t need cancer, but I believe that we have learned and continue to learn from each other. Maybe this comes as a surprise to people who look at the cards I’ve been dealt and thank the universe every day that my life is not theirs. I’m fully aware that the thought likely often crosses people’s minds: “At least I’m not Karin” when comparing my situation to their own circumstances. However, I consider myself extremely fortunate.

If those 12 people that were tragically shot had the choice to take a life of cancer treatment and living with lymphoma to get another 5, 10, or 20 years then maybe they’d take it. We’ll never know. Or maybe that’s too much to bear for those who would rather not have the time to think about the finality of death and impending doom. Death can be sudden and tragic. It is always sad, mournful, and painful for those left behind. But it shouldn’t be a surprise to any of us. We never know what each day will bring. Every morning I thank my body and the world for giving me another sunrise, and I make a promise to myself that I will continue to honor this gift that is life.

We can’t not do things or plan for things because we mightdie. In fact, we should do things because we will die. I’m not talking traversing the globe on a raft or solving the U.S. healthcare debate. I’m talking the every day things, like calling that friend and scheduling that coffee date or actually stopping into that animal shelter that you drive by every day and think about volunteering for.

This is something positive that can come out of such a horror that was that shooting – that it will get people to realize that it can all be gone in an instant, to shift priorities and focuses where necessary and to take the time to savor and be present, to get rid of that guilt and worry and shame and the squelching and the swallowing, and instead let ourselves shine brightly as we are meant to.

I am grateful that this reality of death is smack in my face and this recent tragedy again brings it right to the front of mind. I’ve had a chance to consider it and come to terms with what that means. I’ve learned over the past three years to be able to control that fear of death’s inevitability. When I was first diagnosed, and through much of the initial barrage of treatment, it was much about avoiding death, but now it’s much more about living life. There’s a big distinction there, and it’s taken a lot of work to create that mind shift.

At points I was so hell-bent on ridding my body of this disease and frustrated with the difficult process that I’d forgot to be enjoying my life. It doesn’t come easy, but it’s very vital to survivorship to not think of the time with cancer as something to “get over”, a “blip” in life, because it was and is my life.

Dangling in limbo between death and life, health and disease is not an easy place to be. I don’t have the capacity to live in the future, only in the present and this is a gift.

No one can avoid death, but we can maximize the strength of our bodies, our minds and our hearts and we have the ability to affect others and the Earth during our time here. This can happen in both a positive and a negative way.

Be ready every day. Don’t live with regret. Do what you want to do, what you love. Tell the people that you care about that you care about them and take the time to invest in those relationships. Above all invest in the relationship with your self and the things that matter to you. In the end, all of the other junk just dissipates. You can’t take it with you and it’s about the experiences that you create.

I hope that those that were lost in this shooting did live their lives that way. I like to think so as they were out enjoying the excitement of a midnight showing of a movie they had obviously been highly anticipating – out to have a good time. They had no idea that this would be their last night on Earth but it helps to imagine that before that terror they were out doing something they loved to do – childlike and carefree, eager with anticipation.

Who would ever fathom that this would be where those that survived would bear witness to such an unspeakable tragedy and those that died would never see their loved ones again? No one would. And that’s the beauty of the human race: our resilience. If these people all stayed in their homes, letting death stare over them for fear of entering crowds or being out in the world then they’d miss all that life has to offer and they would still die.

Maybe I’m going to outlive everyone I love and die alone well into my nineties in a little cottage by the sea wrinkly and smiling. Or, maybe I’ll develop a whopping infection in my mediport or my organs will suddenly give out from all the toxins they’ve been dealt and I will die tomorrow. Or, maybe I’ll get hit by a bus. No one knows when and how, but death will happen – to all of us – and it’s something we have the potential to be ready for.

Now is as good a time as any to take pause and reflect. We can’t live in that constant state of stress and fear as it will only exacerbate the process and destroy the chance we have at joy. We do have the means to choose how we journey along our way to death, no matter how long or how short our journey may be.

7 States.13 Days. Back Home in One Happy Piece.

Taking it all in at Rainbow Vista, Valley of Fire, Nevada

This is one of those get-everyone-up-to-speed blogs to update my health and life status, as I know so many of you care and are wondering what is happening. Then, I will backfill chronologically with the huge backlog of blogging I have to do. So – like it or not – you’ll be reading a lot from me from now on. I have much to share and many stories ready to burst – about my cancer treatment and life otherwise.

I’m back home in Connecticut after slews of wonderful traveling. The trip out to see my sister in her Las Vegas, Nevada element finally happened after her living out there for a year and a half. That my parents and brother could be there too was an incredible bonus to be able to have that time as the Dubreuil family. The fact that it all tied in with a childhood friend’s wedding in Malibu and that Craig and I got to spend a weekend in Los Angeles with each other and several more of our Connecticut friends and Craig’s adopted second family since childhood? This was an even bigger stroke of serendipity. All worked out so well.

It was an incredible trip full of beauty of all kinds. Did I feel like a million bucks the whole time? No, of course not. But I live on a different wellness scale, and I was thrilled and proud and astonished and how well my body did with all the activity. The reason I went back and had a PET Scan on the Friday before I left on vacation was because I had three nights of soaking night sweats and was having a lot of chest discomfort. This prompted an emergency visit and scan though I had just returned home from New York City after completing radiation on that Wednesday. Because I was planning on going away the following week, we needed to assess what was going on. As I wrote in my last update, the PET Scan looked overall pretty good; the clean areas on my sacrum and spine no less than astonishing. It wasn’t consistent with how I was feeling.

Those feelings may have just been effects from the radiation and coming off a med. The radiation gave me extreme esophageal irritation to the point where even a glass of water hurt to swallow. I had never felt that before and my hope is that I misinterpreted that chest discomfort to be lymphoma creeping in at a rapid rate, because it’s not.

Dr. M wasn’t thrilled at the idea of me traveling without starting a treatment, nor being too far from her care while on a new treatment, but thoughtfully considered all the options with me. What we decided was to keep me on the course of 50mg steroids that I had been on since Feb. 27, just before starting the radiation to help control inflammatory pain I was having. I would also remain on prophalactic anti-fungal (Fluconazole), anti-viral (Acyclovir), and anti-bacterial (Bactrum) antibiotics to ward against picking up any sicknesses. Prednisone is known to work against Hodgkin Lymphoma cells and is used in many common Hodgkin chemo regimens so the steroids would work to keep any lymphoma growth at bay and maybe even have some anti-lymphoma cell effect in and of itself.

Prednisone is also known to give the shakes, make the heart race, make people feel cracked out, bug-eyed, emotional, super, super stinky gassy, bloated, swollen, starving, weak-legged, with super demi-God amounts of energy. So, in some regards it served me well by giving me the energy I needed and masking any kind of pain or allergies or inflammatory fighting happening in my body. It took away my GvHD mouth growths, but it brought in a bad course of thrush.

So I took the good with the bad. By the Nevada leg of the trip however, side effects settled down. My esophageal pain completely went away and I could once again eat. I had just one episode of bad muscle cramps in my legs. I’ve been getting these on and off since I’ve been on the Prednisone. They start as bad Charlie Horses and can stay just in my feet or sometimes run right up my lower leg. I’ve read from others that this also can be caused by long-term use of the steroids, which can weaken the leg muscles.

I did tons of hiking, walking, biking over the past month so am not at all concerned about long-term atrophy and have been very conscious of hydrating and potassium consumption to keep the cramping at a minimum. The only day it happened was after three miles of hiking in Zion National Park. My family got to hear me dropping F bombs in the back seat of the mini van as I rode out the pain while my toes went ridged and uncontrollable. They encouraged me to yell and cry as I followed it through. A lot of “Son of a Bitch”. “Fuck.” Screams. Massaging. A little ice and it was over after about 30 minutes.

Again, overall I’d say I fared pretty well. I did not feel physically limited at all on this very active vacation. My lungs are incredibly strong, my endurance is probably the best it’s been in my life. My upper body and back are still pretty weak and I am gentle with them, but I wasn’t sweating nor puffing like many of the tourists we passed on the trails. No one would have guessed what I’d been through less than a year ago … and for two years prior. I don’t even believe it.

There were many emotional moments had along this trip, lots more self discovery and discovery about my family, my husband, my values, my love of nature and freedom and openness. Now I am back and I can process and am so happy to be in our beautiful home seeing it with even more appreciative eyes. I am in a very good place right now. Ok, enough. This is a sneak preview only.

To get up to date, I flew back to Connecticut on Good Friday when Craig picked me up at the airport and we were reunited and rejuvenated. It was wonderful to see him after being apart for six days. The next morning we made the 4 hour trek to Allentown, PA where we celebrated the Passover Seder with Craig’s late father’s side of the family. We went a little early so that I could have a movie date with his cousin Halle that we’d been looking forward to since Chanukah – Hunger Games, what?!?!? Then it was back to Connecticut that night and we hosted Craig’s late mother’s side of the family for Easter brunch at our home. It was wonderful to have his family here. His cousins kids did an egg hunt and Craig and his Grandma whooped at a game of Bocce Ball, while the rest of us enjoyed the warm spring day.

The Monday following was the last leg of travel. I had to head back into NYC to meet with Dr. M to check in with how everything was going and decide on the next steps now that I was back on the East Coast. She is so thorough and thoughtful that we had even been e-mailing while I was away about some different clinical trial options that had opened up at Sloan-Kettering and different options to consider that arose as she talked about my case with more of her colleagues. I spent a couple hours together with her and her nurse Brynn, both of whom I love spending time with regardless of the circumstances. However, it was an unexpected long day (a 17-hour one) which involved a fluke brush fire across the train tracks on the way home that kept our train trapped for hours. Yes, this is a full blog-worthy story. I couldn’t make it up if I tried.

But I left with a very positive feeling and a “plan,” that’s of course always adaptable and changeable depending on how I am feeling. I am going to go on to one of several options of targeted treatment within the month. Because I have had no night sweats this month, have no palpable lymph nodes and no Hodgkin symptoms to really speak of, we have the time to explore a brand new drug. I won’t know for sure if I can get onto the imaging trial until Monday when the lead investigating doctor returns and approves me.

The clinical trial is for a Phase 0 PET Scan Imaging trial of a brand new drug in development at Sloan called PUH71. The exciting thing about it is that its actions can be seen on a PET Scan, so ideally we'll be able to see whether it is attaching to my areas of disease by doing this specialized, controlled series of three PET Scans using a very low dose of the drug as the tracer instead of the normal glucose uptake injection.

After the investigators look at the scan results, we'll decide whether it makes sense for me to use that drug now and jump onto the Phase I trial they have if I can get a spot. Or, if not now, then it’ll be an option I have it in my back pocket for something to use in the future – another key to try. I have the flexibility to do it now as I'm not in crisis mode, so it makes sense to do at least the imaging piece. At the very minimal, I’ll be helping to advance the science of PET Scan technology, hopefully making it more accurate for future patients. I have to get scanned anyway, why not contribute to research?

Either way, I'm going to go on some type of therapy by the first week in May. Possibly back to the targeted therapy Everolimus that worked well for me in Houston before transplant and is now available at Sloan. Maybe a couple more Vinblastine injections? Maybe back to SGN-35? Maybe onto the Phase I drug? There are many options that offer a pretty normal life while on them. There is no need to take out a bazooka blaster right now and knock me down to zero. There’s not a lot to blast. We’re just doing a little more maintenance to the areas we left untreated while radiating. The radiation took away my dangerous trouble spots and my new immune system has been working against other areas, now it's just dealing with some little areas of involvement in my abdomen and chest, which don't seem to be causing me any symptoms nor putting me in danger right now so I'm loving being off of treatment and clear headed once again.

I have also started a slow taper off of the steroids, which will last about three weeks. Dr. M has me dropping very slowly to keep my body safe. After being on steroids for almost two months the body becomes reliant on it and stops producing hormones of its own so we need to be careful as we wean me off. I’ve dropped down by 10mg and in has snuck a lot of lower back pain and hip pain that the steroids were likely masking for me. My energy is reducing, but so is my swollen moon face, my gassy assy, and the shakes, so all of that is good. It’s all about getting into balance again. 

Not As Easy As It Looks

I haven't been able to write. I still don't know if I am able to write, but I'm going to give it a try. I'm not certain why it's been so difficult. I think it's a combination of not wanting to dole out difficult news to those that read this and of the memories that flood in every time I open this blog page. But this is my outlet and this is my honesty. I haven't been feeling "inspirational" or "heroic" or "positive." For really the first time, everything has caught up with me.

I have been living with focused blinders on and now am suddenly feeling all the punches from nearly three years all at once. I've gone at this with sheer determination and I know that what I am writing here will come as a surprise to many, but I am asking for your understanding and support. I know that this is not what always appears on the outside. But I believe that it is important for everyone dealing with their own medical issues and for those watching a loved one go through it to understand that we can't be smiling all the time and that it gets very tiring to hold it all together. I think that that's okay. But I don't think that it's easy to admit.

Life has been very difficult over the past month. Things have been more difficult for me to handle than they have ever been. I've been dealing with a lot of anger, frustration, and feelings of defeat and helplessness. I'm uncertain and uncomfortable. I'm unfocused and unstable. I get very sad and very mad and very frustrated. I'm finding it much harder to pull out of the low places. I'm finding many less places of elation. I resent other people and get wildly jealous of their happiness and wish desperately to find my own again. I feel like I cry all the time, but at the wrong times.

I hate being on treatment again. I hate that I have no idea if it's working. I hate the feelings that the Hodgkin's disease is flaring up. I hate the fear of GvHD. The Revlimid has been primarily well tolerated except for tremendous fatigue; I am so tired all of the time but so anxiety ridden that I can't sleep in the way I need to be sleeping. My eyelashes have thinned again, nearly all of them that I worked so hard to re-grow after transplant have been showing up on cotton balls and on my pillow. I again have the eyes of a cancer patient and it's incredibly unnerving.



My husband's mother, Linda, passed away on November 29. Craig and his brother, Eric, were with her by her side. Letting go and watching her slip away over the course of a couple of weeks was heartbreaking, as was deeply feeling how it affected Craig, Eric, Rachel, me, and the rest of her close family. I hate that I am not at my own full capacity to be able to pick all the rest of us up. I hated that I felt I was not the wife I would have been three years ago. I spoke at her service and spoke much with her in her final days and am inspired with how at peace she seemed to have been with her life and the choices that she made in it.

It is also the first Christmas without my grandmother. There is certainly a void there and because I was so sick myself when she died, I have had no closure and no comprehension that she is gone except in the eyes of my mother and uncles. I'm almost emotionally numb to it.

My dear friend also just lost her mother to another cancer battle and I feel like more and more people are getting diagnosed. I'm also deeply affected by the loss of a fellow warrior, a woman who came to visit me when I was in transplant quarantine and who helped to decorate my room with photographs and art. She never made it through transplant and is now gone and the sadness of that is immense. It's terrible and awful and I wish that there was something that I could do to make it all go away.

I had been working out and getting back into yoga, but I've been so tired and so achey that I haven't been able to over the past two weeks. Eating is a continued struggle. I'm afraid that everything I eat will give me more cancer. I'm rarely hungry and my meals have been scattered and unbalanced. My mouth is always dry and my tongue aches and tingles all the time making it difficult to eat and sometimes even to drink.

The MFA in writing graduate program has again had to be deferred, if not completely unattainable now. My life is just too variable. It's too much money and it's too much of a commitment at this point and I don't know that it makes sense to make that investment. I also never did get out to Nevada to see my sister, the mountains, desert, and Vegas strip. The trip had to be canceled so that I could say goodbye to my mother-in-law at her memorial service.

I did move forward with my return to work full time, though primarily from home and with different job responsibilities. It's taking adjustment and a reassessment of myself and my capabilities. It's been difficult to have the faith in myself that all of my team members have in me. I'm doing my best to push through this transition period as I get past the uncomfortableness and into the realization that I'll never be the same as I was before all of this. Everything has been compromised.

I no longer have the capacity nor the energy to keep up a front or to brush things off. I am irritable and irrational most all of the time. No one can say the right thing to me and I'm building my own walls and breaking them down over and over again. This has manifested itself in my relationships with those closest to me: my husband and my parents and most troublingly, myself. No one beyond that would probably even know how much I am struggling – or maybe they do and I just don't know it. I'm only just starting to share these feelings.

My donor transplant was wildly traumatic. I've written about this before, but again, I am only seeing now how painful and scary it was because I didn't let myself get taken down by it at that time. I was in survival mode and it was exactly what I needed at that time and how I got out to the other side. Now that I am here, I have no idea what to do with myself.

I'm sorry to be so brutally honest for those who have yet to go through what I have, but transplant was an inhuman experience. I was literally vomiting on myself, shitting and pissing my pants multiple times a day. I'd get up, throw out my underwear, change it, and have no more energy left to do anything else. I spent my 29th birthday with a mouth full of blood from the severe sores in my cheeks and on my lips. But somehow what I remember fondly is smiling through it, with red stained teeth, at my dear friends who came to celebrate with me. I spent nights so weak that I had to use a commode next to my bed and sometimes I couldn't even make it to that. I woke myself up talking to clusters of balloons and would be so tired that I couldn't hold onto a cup of soup without falling asleep, losing my grip, and spilling it all over myself, too tired to even clean it up.

I came so close to death and to have risen from that – after constant treatment for two years before that – only to come back to find out that the f*&C^ing lymphoma is still growing is enough to knock me to the floor in sheer defeat. Being back in doctor's offices so much recently and having to recount with some semblance of cheeriness to my oncology teams of past that: "Yes, I had the transplant, but the journey continues ... ." or some bs line, is awful. I hate it. I wanted this to be over. I wanted to tie it in a bow and put it all away.

I'm not giving up. I just don't know what I am supposed to be doing. I don't know if I'm going to get better. I don't know how much time I have. These are tremendous unanswerable questions that I suppose we all try to answer. I just want to stop thinking about them all. the. time. I have lost a lot of my self confidence and my emotional stability has taken a big hit. I wish that it was more acceptable to be sad and scared and that there wasn't this tremendous pressure to keep myself so positive for everyone else. What I ask is for people to be real with me. Tell me it's difficult for you too. Tell me that this is normal, that it doesn't mean that I'm weak. Maybe then, I can be realistic with myself.

I have one cycle (21 days) of the Revlimid 5mg under my belt. As I mentioned, the fatigue is intense. However, my blood counts do not seem to have been affected at all. They are actually still soaring since my sister's donor cells gave me such an incredibly active new immune system. All of my counts are in normal range. My platelets are 280,000 – at stark contrast from this time last year when I had to do jumping jacks to get them up to 75,000 in order to receive treatment or the numbers as low as 16,000 this summer.

My liver function numbers are up: this could mean that maybe some Graft vs. Host/Graft vs. Lymphoma effect has been stimulated by the Revlimid. This is what we have been hoping for, sort of. My odd tongue feelings could be a part of that also. And, I've been having strange rashes, hives and welts that wax and wane out of nowhere. None of my doctors know exactly what all of this means but they are watching me very closely. There is so little data and so little precedent that it's all kind of a guess. I continue to see my transplant and lymphoma docs at Sloan every other week. I head back to NYC on Tuesday and we'll talk about starting up the second cycle of Revlimid. After that, a PET Scan to check progress.

I also am on the tail end of a rough cold virus which had me in hacking coughing fits for several days and blocked up my left ear completely. I just finished a course of antibiotics and feel improved but not fully recovered. I am so deeply hoping that it's not another "upper respiratory infection" that turns out to be the lymphoma on the rise – again.

I've also had some pretty incredible back, hip, and sacrum pain and aches. These aches are deep in my bones. I couldn't move without being brought to tears. It was so bad last night that I had to take pain medication, something that I have not done since I was an inpatient during transplant. Dr. Moskowitz ordered me an MRI of my entire spine last week and it didn't show that any tumor was pressing on nerves, which was assuring. It didn't reveal any vertebrae involvement that we didn't already know about. I am aware that much of these back issues may be related to tension. I hope?

I don't mean it to seem that things are awful all of the time. Christmas is my favorite time of year. We have a beautiful tree and have had many enjoyable moments, and I am doing my best to focus on those. I am so appreciative of my beautiful family and friends. My sister comes home for the holidays next week and Craig and I host our annual holiday bash on Saturday, which will bring so many of our favorite people into our home. I feel so much love, especially at this time of year. Maybe that's why this year, at this time, it's been so very hard for me because I want there to be many more to come. I miss my health terribly and it is the only gift I want this year.

Worried Sick

I feel as if I’ve squandered away the past week. I completely bowed down to the tremendous anxiety and stress that today’s looming PET Scan was causing me. And after all of that fretting, my oncologist and I decided to postpone the scan – as well as my appointment with the transplant team – until next week. I contracted some kind of cold/flu and we do not want to risk a false positive reading on my scan results.

Whether I picked up a germy somewhere or I got myself sick with stress, I came down with a whopping sore throat, chills, feveryness, aches and tremendous fatigue this past weekend. I convinced myself that it was DoomsDay. I worried and worried and worried andworried about all the scenarios:

Conclusion A: I’d never recover from the virus I’d contracted and it would find a way to eat me alive

Conclusion B: Hodgkin’s Disease was flaring on the rise, for sure, so fast that my new immune system would never be able to catch it

Conclusion C: I re-broke my foot, as it was so achey, along with the rest of me. A piece of bone must have dislodged and was floating through me ready to nest in my brain and cause me to hemorrhage (so obvious)

All of these scenarios were evils that I manifested then couldn’t handle comprehending. I completely lost control and surrendered, basically digging myself a grave these past few days. I conceded defeat and moaned and groaned the days away just wishing I could get to today to have my damn PET Scan that would seal my fate. That is not like me, and I hated it.

I could do nothing but pace around the house like an angry troll. I think I may have worn down the floorboards with all of my aimless wandering. I slept more than half the day away counting the hours until Craig came home. I was weepy at everything. I did a lot of “tinkering”: starting projects, moving things around, but ultimately not able to follow through with even the smallest of tasks. I was so tired and so flushed. The idea of even emptying the dishwasher was enough to send me into a tizzy. It is a very good thing that I have a patient, aware, and experienced husband and dog that kept me going.

Overall, I was very sad. I felt so good the week prior and had been so positive about the encouraging strides I was taking that I could not handle the setback. I could not handle the anxiety and the anticipation of what today’s scan would reveal, nor the anxiety surrounding why I wasn’t feeling well. I’d wake Craig up in the middle of the night crying and telling him how kind he was and how much he means to me.

But you know what? I’m not dying right now. I had a cold with a sore throat. A cold. It’s now five days after the symptoms started and my throat doesn’t hurt a bit, my energy level is on the rise, and I’m walking on my foot without any type of cast with only a little swelling, no pain. I no longer feel fevery and my tight chest has opened up again.

Now I’ve learned that even transplant patients get a common cold – and an even more important lesson, we can recover from it with rest and fluids and a little anti-viral Tamiflu prescription just like a regular person. Could this mean that I’m a regular person? I’m so used to hearing incredibly grave news that it’s strange to me to think that being sick could be just that, being sick. Not that the cancer is back. Not that I’m dying.

Since transplant, my confidence has taken a big shot. I get very afraid of a lot of things, an emotion that I am not accustomed to. I’ve always been pretty fearless and even going through much of my initial cancer treatment, I spat in its face. But now, the fear of recurrence is not as easy of a beast to tame. It roars and spits right back at me. If the cancer relapses now, I don’t have many viable options. In the past I always had the autologous transplant in my back pocket. Then I knew that if that failed, I still had the allogeneic transplant card to pull. Now, I’m just dangling on hope that this is forever successful.

I get a stomach cramp from eating too much cheese and I immediately think it’s Graft vs. Host Disease attacking my intestines cell by cell. I cough and I think the lymphoma is gripping my sternum again.  I have a gas bubble in my chest and think that my heart is giving out. Obviously, I tend to jump to extremes. But I can’t blame myself, I’ve been living in nothing but extreme conditions for the past two years. I’m not used to these common ailments.

Like Dr. Sauter, I need good data. I need some reassurance that things are looking clean and bright inside. Neither one of us wanted to chance some residual chest cold inflammation showing up that could contaminate my results. PET Scans are finicky enough without the complications of a viral infection. So, I will wait another week. Yes, that means another week of anxiety, but that is far less threatening than mulling over a suspicious hot spot that’s nothing more than my lymphatic system doing what it’s supposed to do: attack viruses.

The scan delay actually alleviates a huge weight. I’m the one who called the clinic yesterday and questioned whether it was wise to get scanned today. My desire to have an accurate scan outweighed my desire to get it over with. I knew Dr. Sauter would agree with my concern. I even got out of traveling to Sloan-Kettering for a visit. Instead, I only had to get bloodwork locally today. My counts look fantastic and all blood types continue to soar into normal range.

I decided when I woke up this morning that I will not let the worry overtake me anymore. Five wasted days is too many days. And maybe they weren’t wasted, maybe I needed that rest and that zombie period to get to where I am today. I suppose bad days are important too; it helps me to realize how good my good days are becoming.

On Halloween I’ll be back to work full-time from home and will be gearing up to start graduate school to pursue my MFA in Creative Nonfiction Writing. These pursuits will no doubt help me refocus my life on what I want it to be and regain my confidence and control. I’m still straddling the gap between patient and survivor and look forward to being able to let go and come to terms with all of this. 

It’ll be refreshing to fill my days with meaningful, fulfilling projects and stimulation rather than doctor’s appointments, drugs, needles, and incessant medical logistics. I’ve got to move on with living my life. I can’t just wait around for something bad to happen. It’s damn time for some good things to happen in my life. No more wallowing around: If I don’t stop that gig soon, I’ll make myself certifiably crazy.

I did not go through the trauma that I’ve gone through so that I could shrivel up at the first signs of struggle. Things are a little harder for me these days, but with each new accomplishment, the award is that much sweeter. I just need to rekindle that drive and motivation and not let the fear get the best of me. I know in my heart that I am fully capable of anything I set my mind to, it’s just a matter of taking that first really scary step. This week’s accomplishment? I was sick, and then I got better, and then I went on a fall walk on both feet with my dog.

In the words of my man, Ray: 

"Worry ... worry, worry, worry, worry. Worry just will not seem to leave my mind alone/ Trouble ... trouble, trouble, trouble, trouble. Seems like every time I get back on my feet she come knock me down again/ Worry. Oh, worry, worry, worry, worry. Sometimes I swear it feels like this worry is my only friend." 

By Bike and Boat I Go

My broken foot is now in an air cast that is worn with a sneaker allowing me more flexibility and more opportunity for sporty activities. Of course I latched onto this news with zeal.

After examining an X-Ray of my foot bone last week, my orthopedic doctor told me that I could start using a stationary bicycle while using the stirrup air cast for support.

“How about a real bike?” I asked him.

“Just don’t fall off,” he replied, warning that sometimes people find that their balance is shaky after being off of one foot for so long.

So I dusted off my bike and tried tooling around the neighborhood. Yes, it was a bit weird at first because my left hip flexors, calf and quad muscles are so far behind my right side developmentally. It felt bizarre, but so gratifying to be able to use my left leg muscles again in a concentrated way.

After passing the neighborhood street test, Craig and I took our bikes to our section of the paved East Coast Greenway trail, just a few minutes from our home. It’s a long stretch of flat walking/biking trails that I greatly missed using. The scenery is beautiful and everyone that we passed gives a warm finger wave from their bike handles or a smile and a nod of their helmeted head. I love it. I love everything about that trial.

My wheel (or was it my joints?) squeaked obnoxiously with every revolution. Both are in need of air, grease, and a tune-up – each of us a little out of practice. Regardless of the squeaky soundtrack, Craig and I had a great time together at a slow pace with a good, steady cadence.

It was liberating and fun and romantic. With Craig there as support providing the spotting, I was able to get my confidence and bike legs back again. Later in the week I went back for a solo trip along the quiet trail. The leaves had just transformed into colors of fiery reds and oranges and the trail offered the unique perspective of cutting right through them. I flew over the dried, yellowed leaves that had fallen and scattered across the path creating that distinctive autumn crunch sound as the bike tires rolled over them. The sun created intricate shadows and patterns amid the tree-lined, farm-lined and marsh land landscapes that I biked past.

At the end of my hour-long ride, I hoisted my bike into the back of my borrowed Jeep on my own and felt sweaty and dirty with foliage flecks and bike chain grease – fantastic.

After missing an entire summer of kayaking opportunities while in the hospital and recovering in Manhattan, we took advantage of the Indian Summer that was this past Columbus Day weekend. So as to not make the adventure too challenging, Craig and I ditched one car down river then did a long 3.5-hour paddle toward it along the picturesque Farmington River. It was near 80 degrees, hot enough for tank tops and shorts. Hot enough for Craig to take an unexpected dip into the murky river water after a not-so-graceful transfer from dock to kayak. We were so concerned about me getting safely into the kayak with my bum foot that neither of us considered that Craig might capsize.

It was quite an ironic situation to watch from my stable kayak vantage point a little down river. I saw him take the confident step from the crew house boat launch onto the kayak floor. The boat tipped a little toward the dock then it continued to roll and I realized he was far beyond the balance point and the kayak was bottom up.

He came up for air from the murk shouting: “Oh, shit!” many times over, while grasping in panic at the water all around him. I fervently glanced around at the contents in my boat and realized that yes, I had our lunches in my dry bag, but his kayak was holding the dry box with our cell phones and car keys. I processed the pieces and realized the origins of the “Oh shits” and understood why he was continually diving the 10 feet down to the river bottom shouting to me: “The keys! The car keys!”

Meanwhile his kayak (with its storage section flipped open: fail!) and paddle were floating past me downstream. He couldn’t leave the spot where he dumped it for fear that he’d never find the keys. So like a gull diving for fish he kept at it with deep breaths and forged through river plants and sludgy mud struggling to keep his eyes open peering through the silty water. 

“You’ve got to get my kayak,” he shouted in between river dives.

“I got you babe,” I yelled back. Oh shit. Oh shit. I thought to myself not knowing how I was going to catch up to his boat, flip it over, secure it to my kayak and paddle them both together against the current and back to Craig. I have minimal upper body strength. I would be in big trouble if I fell into the no-doubt bacteria laden water, still full of junk from this summer’s hurricane and river swelling. Swimming in river water isn't exactly on the post-transplant "allowed" list. I also had no use of my left foot, so balancing and maneuvering were made extra difficult.

By some organic miracle I was able to grab the kayak with my paddle and lodge us into a downed branch so that I could tie it up without putting myself any further down river. The tree trunk dam lasted long enough for me to be able to fashion my life jacket into a rope between our kayaks and with Craig’s kayak trailing behind like an awkwardly placed motorcycle side-car, I paddled against the river current toward my husband.

In the meantime after consecutive, exhausting dives, Craig came up with the keys and the dry box with the cell phones, which he dangled at me from afar. Redemption! The only loss was his sunglasses and a bike lock we planned to use to tie up the kayaks at the end of the route – not a bad sacrifice.

With all my might I hauled those kayaks back to the dock where Craig sat soaking wet, river vegetation stuck to his goosebumped skin, eyes red from the sand they were no doubt filled with.

“Don’t worry, I got you babe!” I said again as I pulled up parking his kayak next to him like an expert backing a trailer in, impressed by my own strength and ingenuity in the situation. I couldn’t believe Craig dumped it. More so, I could not believe that he located most of our belongings. He was breathless, coughing up dirty water and swallowing pride – not smiling.

I kept it quiet and cool as he got into his kayak and we floated into the center of the river. When I felt the drama had settled some, I looked at him again and said: “Is it okay to laugh now?”

We both burst out in laughter and then I started in teasing him with corny jokes, which lasted pretty much the entire journey: “Nice day for a swim, eh?”

It was nice to be on the upside of the kayak of life for once. Nobody’s invincible; everybody gets a little off balance sometimes. But when we do, it's nice to know that someone else is there. Once again we proved to each other that we make a pretty good team when shit hits the fan or keys splash the river – or whatever metaphor the day might bring.

First (Re)Birthday

Today marks one year since my autologous stem cell transplant. It's incredible to think that a year has gone by and about how much has happened since May 18, 2010 – my Day Zero. This month also marked the two-year anniversary of my Hodgkin Lymphoma diagnosis: May 8, 2009.

I haven't been able to fully reflect on how much has been rebuilt, grown, and evolved since then as it's been an essentially continuous treatment ride since. But what I can reflect on and rejoice in is that I've survived and thrived and continue to live, and live fully, with this disease. I'm more appreciative and aware of everything and everyone around me and for that gift I am forever grateful.

However much overused, I think this is the perfect opportunity to post one of my favorite songs of all time. Who knew how much my pre-cancer affinity for Rent foreshadowed my real life and the themes that have arisen in it? I couldn't say it better myself, Mr. Larson.

Today - with my growing crown of ringlets, which I've come to adore (May 18, 2011):

Stem Cell Collection - 12 million stem cells harvested (March 2010):

Day Zero (May 18, 2010) receiving back my 6.5 million stem cells that would rebuild my immune system and allow my body to recover from the toxic chemo of the weeks before:

Autologous Stem Cell Transplant 10-day inpatient recovery (May 18-May 29, 2010):

The very beginning (recovering from my first lymph node biopsy, May 6, 2009):

Perceptions

I was listening to the introduction of Randy Pausch's "The Last Lecture," a speech I've listened to many times in my pre-cancer life, but this time it made me burst out laughing. After he explains that he has approximately 10 tumors in his liver and his doctors told him that he has three to six months of good health left, he follows up with: "If I don't seem as depressed or morose as I should be ... sorry to disappoint you." He then proceeds to pump out one-handed and clap-between push ups and demonstrate that he's probably stronger than most anyone in the room. Unfortunately, he's since succumbed to his terminal cancer, but it's obvious that he blew away perceptions and expectations along his journey.

People – friends, family and medical staff alike – constantly say to me: "Well, you look great," or if it's over the phone, "Well, you sound good." And I always wonder what their expectations were. Then I realize that on paper, yes, it makes sense that for what I have going on in my body and how aggressive this cancer and this treatment is, I should look like an ashen walking corpse, but that is simply not the case.

Despite how widespread cancer is in the world, there seems to still be such a stigma around the word that elicits a lot of fear and mental images of people spending every waking moment vomiting, weak and morose dangling from their last thread of life. When in fact, so many people are living, yes, living with cancer. Living despite the disease in their body.

Anytime I'm in a crowd at a sports game or the mall or at a play, I am always wondering how many other cancer survivors/fighters there are surrounding me that I would never be able to pinpoint. We don't all look alike. We don't all feel the same way. The word "cancer" is just far too general to describe the intricacies and uniqueness of the different forms that it can take. There is no one picture of what a cancer patient is supposed to look like.

That's the funny thing about cancer. It can wreck havoc internally but not show anything outwardly. How can I fault anyone for not knowing what to say when they see me for the first time in a long time? Or, when I drop the cancer bomb because they have no idea what's been happening in my life. There is no "right" thing to say.

Saying anything is better than saying nothing at all, even if it's just saying: "I just don't know what to say." To again quote Randy Pausch, as his father always told him: "When there is an elephant in the room, introduce it." I try to be sure to acquaint people with my elephant when I can see they are struggling with whether or not to acknowledge the figurative animal for fear of upsetting me. It doesn't upset me. I know it's there and I appreciate when people express their empathy and support. But pity? Now that's something I don't appreciate.

I laugh because despite how curious it is for me to hear, I catch myself saying to other patients: "Well, you look fantastic!" all the time, because you know what? It's true. And maybe it sounds trite and maybe it can be perceived that it's discounting what they're going through, but I think any cancer patient can benefit from a little ego boost, especially when we are hurting so badly on the inside. No matter what might be happening biologically, the spirit still shines through brightly. That is something that can't be overtaken by sunken eyes and pale skin. Sometimes it takes someone else to point that out.

I read an excerpt by writer and performer Jenny Allen, author of the one-woman play: "I Got Sick Then I Got Better." She was also a patient at Sloan-Kettering and was featured in the hospital newsletter. I don't agree with everything she says, but I think it's refreshing and extremely brave for her to speak about what it was like for her to hear the sometimes profound, sometimes odd things people chose to say to her and about her resulting reactions, which totally depended on her mood that day – something I can completely relate to. Talk about acknowledging the elephant in the room.

Cancer patients aren't just the feeble, bald, hopeless beings that Lifetime movies are made of. We're still people. We're still living. And yes, damn right, we can still look damn good.

Rehab

Like Lindsay Lohan or Tiger Woods I have been – and continue to be – in rehab. Though my rehab isn't as glamorous as crack or sex addiction. Just another cancer patient trying to get my body and my life back to a less tumultuous state. And it's a self-inflicted rehab so no ankle bracelet needed to alert the authorities if I get off track.

Every day has been a little bit better than the last, which is encouraging for sure.

My taste buds have really made a comeback. I had wild mushroom, spinach, goat cheese and pine nut stuffed poblano peppers last night and was melting at the party of flavors. It's wondrous not to have everything taste like Metamucil – or like nothing at all. The appetite is getting there as well. Still small, but it's nice to know the feeling of hunger again. With the start of the summer season also started our first season as part of a crop share with a local farm. The CSA allows us to have access to a bag full of fresh fruits and veggies every week, plus access to pick-your-own herbs, flowers and more veggies. I'm psyched for the local, chemical-free nutrition.

My legs were covered in raised flesh-colored bumps which made my skin feel as if it were covered in fish eggs but now a week after they popped up they seem to have subsided. However, they have moved to my face. When I run my hand over my cheeks and nose it brings back shudders of my horrible middle school acne days. The bumps are at times itchy and a bit red but I think more noticeable to me than the outside world – at least that's what they tell me. But I'm assured that they will move on out just as they did from my legs. If that's the worst that my body is reacting after what happened to it, I'll take it!

I've been going to yoga, hiking, walking and even had a day of kayaking. I'm taking it slow and being patient, but I don't let a day go by where I don't push my body to do something to get it back into shape. It spent way to much time atrophying in a hospital bed. Yoga class is hard for sure, but I really enjoy being back at the studio. I like having the instructor there to adjust me as needed and to be surrounded by others with a similar mindset in such an encouraging and welcoming atmosphere. I'm at once amazed at how much strength and flexibility I lost over the past few months and at what my body is still capable of and the strength it held onto. I can walk for miles on end on flat ground without a problem. My endurance remains but it's the uphills and quick exertions that are tough. But as I said, every day gets a little bit easier. I will be running the 5K in the Hartford Marathon in October ... if not an earlier race.

I still need a daily nap, but the nap duration requirements have lessened. An hour is ideal and the pass-out point usually happens around 3pm. That's when I hit the wall. I wake up several times throughout the night and look forward to an unbroken sleep some day.

Overall, I'm just listening to what my body needs and trying to comply ... though pushing it past its limitations at times as well.

The timing of this rehab period couldn't have been better if I planned my cancer relapse myself. The weather is beautiful this time of year and the sun and warmth and thunderstorms and passing showers are nothing less than cathartic. So is time with Sammy the wonder dog, always good for a loving snuggle or a raucous romp through the woods. Craig is wrapping up school next week and will have a couple weeks off before his summer gig so we can spend time healing/enjoying life together.

The plan is for me to ease back into work after the July 4th holiday. I'm really looking forward to getting back and to restoring my sense of purpose while being part of the greater community. It'll also be nice to feel like an accomplished adult again rather than a sick little kid.

Now if my hair, eyelashes and eyebrows would start growing back then at least I wouldn't look like a cancer patient anymore, but I won't be escaping that anytime soon. I'm as hairless as the Pistons' Charlie Villanueva, but not nearly as good with a basketball.

Aftermath

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.

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.

Transition

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.