Good News, Bad News

I did not get chemo today. Part of me is rejoicing at having gotten out of it. Another part of me is devastated at the reason why. Another part of me has the omnipresent dread that this means everything is going to happen faster. Again, that cancer world cliche comes up: "Take the good with the bad."

And this time the bad is not so bad and apparently it is not a permanent bad. Craig and I went into the cancer center today with the requisite snack and activity bags packed. I was wearing my sweats and slippers and carrying the lavender prayer shawl that I cozy under while I hold ice in my hands and under my feet. By all accounts we were ready for another chemo infusion. The night before we discussed that it was to be the 38th infusion of chemo in 17 months. That's a lot of rat poison.

Except for my usual anemia, my blood counts looked good. They've just started to ease downward so I certainly passed that test. It'll be later this week that I sink the lowest. However, the results of last week's pulmonary function test halted today's treatment. My transplant specialist at Sloan, Dr. Sauter, had ordered this test to have a look at my lungs and make sure that there weren't any signs of toxicity before pumping me with more GND. The test requires a series of inhales, breath holds, sharp exhales, long exhales, etc., done with a respiratory therapist.

Dr. Dailey informed me that the test portion that measures how well my lungs are able to diffuse oxygen into my bloodstream showed less than favorable results: 51% of predicted. This certainly explains why I am easily winded ... the oxygen can't get to where it's needed efficiently enough. This is obviously disheartening. I miss the other 49%. I was only in the 80th or so percentile when I had this test done pre-autologous transplant in April, showing that the Bleomycin in the ABVD regimen had already taken a toll on my lungs. Most recently, the Gemzar in GND can have the same toxic lung effects. This added insult to injury.

We waited while Dr. Dailey consulted by phone with Dr. Sauter at Sloan about what to do. It was decided to spare me any further damage and to pull the plug on this last infusion. Instead, the transplant date will be sooner. Get out the eraser ... again.

I'm happy about getting things moving I guess, but I'm not happy about this lung damage news. However, I'm told it's not a permanent condition. Once this is all over, my lungs, like everything else that has been damaged, will be able to rebuild. I believe it. I've been impressed over and over at how my body has been able to bounce back. Though I'm discouraged now, I know it's not forever and half capacity is better than no capacity.

So now I'm on the full-speed transplant train. This is actually going to happen. Next Tuesday I'll go back to Sloan for a marathon day of pre-transplant testing. Then, I'll head to the city again on Friday to see the doctor and go over it all. I could be admitted and starting the whole shebang by the week of September 27th. That's 12 days from today. This is pending any new developments of course.

The day has been a mishmash of emotions. I had to take an intense walk with some classic Dave tunes blaring to blow off some anxiety steam. I'm not sure really what I feel right now. Good? Bad? Indifferent? Yes. Yes. And, yes.

Must Be Time

Much of the aches have subsided, though the feeling that I have been recklessly clocked in the jaw overnight is still there to greet me every morning. The throat rawness and soreness has dissipated. My concentration is back–in fact, I had the focus to start and finish a 600-page novel this week (unbelievably rewarding to me). My energy levels have risen back to what I now consider my normal. It all sounds too good. This must mean it's time for another chemo whop.

Yes, indeed. Pending any huge drop in blood counts, the GND chemo will again be plugged into my port tomorrow and send me back into slow-man's land. The land where everything is blurry in mind and body and everything you try to do takes 12 times more effort: the sumo wrestling suit phenomenon.

Like a song stuck on repeat I again tell myself: "If it's making you feel like this, imagine what it's doing to the cancer ... ." Blah. Blah. Yada. Yada. In all fairness, outside of the immediate days following last Thursday's chemo I've felt pretty well. "Well" of course being a relative term. If my pre-chemo ravaged body suddenly popped into the picture I don't know that I've even recognize it.

Pretty under the weather this weekend, Sammy and I spent Friday night at my parents where we could be spoiled. We took my Dad's antique car to the Bethlehem Fair and enjoyed fried dough and apple fritters while donning hoodies in the suddenly cool fall night air. Breathing in the fresh, country air and licking my cinnamon slathered fingers did me good. Each day I grew progressively stronger.

The primary goal of the week has been to be outside as much as possible soaking in every last drop as if somehow I'll be able to revisit the wind, grass, leaves, and trees from the climate-controlled confines of my hospital room. I spent an extra-long time at our CSA farm Saturday picking edamame and basil under the warm sun. Eating, reading, writing are done outside until the mosquitoes set in. I like to think of myself as a solar panel absorbing and storing all the energy for later release as needed. But as that is a mere pipe dream, I've been taking pictures of our favorite places to walk and hike so that I can decorate my "home away from home" with them and at least visually transport myself.

With my counts and energy *high* I've been back in the yoga studio as opposed to practicing with my DVD. This has been strengthening and calming. As much as I've come to love yoga, I do miss balancing it with a good, sweaty workout. It sounds strange but I have this great desire to go to the gym, run on the treadmill, lift some free weights and just get real sweaty. I long for the kind of 5:30 a.m. gym visit that used to leave me with chest sweat and swamp bottom. Even better, I'd love to take a body pump class that would leave me with that old, welcome soreness. An ache in my body that meant it was recovering and building muscle, that it was leading me to be toned and strong, not the ache I feel now, which is an angry one as my body tries to heal and survive ... not thrive.

Before all of this I climbed the 3,100-foot summit of Mt. Monadnock without blinking. Granted, I'm not saying I was a Lance Armstrong by any means, but I never struggled with athletics and endurance. Now I sweat out drugs and toxins as I sleep. Now I break an unwelcome sweat not from purposefully pushing myself to, but from the simple act of carrying the laundry basket up the stairs.

Now when I sweat it's not adrenaline fueled, it's a pure biological function of my fatigued organs having to work double time. For now I guess I'll have to settle for a warm, post-yoga or post-flat- terrain-walk glow and be grateful for that.

If years from now I ever whine and complain about getting in a daily workout someone kick me in the gut. Someone remind me that at one time I had to inhale medicine out of a tube in a pressurized room in order to assure that my lungs wouldn't fail me. Remind me how I felt today when being out of shape wasn't a choice, but a sentencing.

Moving Target

As soon as I think I have next steps planned, start telling my caregivers, begin pulling out items to pack, work on travel plans, and am about to send an e-mail updating my boss at work, it all changes.

When my sister and I were young and would travel to Cape Cod beaches with my family we had a strange little play ritual that still comes to mind every time I go to the beach now. We'd write our names or draw smiley faces with our toes in the firm, darkened sand of the ocean's edge. Inevitably, waves would crash and travel up the shore engulfing our writings and taking the granular canvas away with them. As this process repeated itself over and over, we'd sing into the ocean breeze: "Everything washes away when I'm trying to write it" in expert harmony to a tune we crafted just for to the sentence. That was the whole song – over and over.

This is what is happening in my life now, except instead of sand, it involves entering, erasing, editing and reentering appointment and travel dates into my iPhone calendar. If I was writing in an old fashioned date book, I would have long ago instituted a pencil-only rule.

On Tuesday, Craig, my sister and I traveled down to NYC for more Sloan appointments. I met with Dr. Sauter to go over my PET and CT Scan results in more detail and what they meant for **THE PLAN** and stuck my arm out in the clinic for further pre-transplant bloodwork. My sister had an appointment with a transplant nurse who talked with her about her donor duties and put her through a very thorough physical exam, a chest x-ray and an EKG of her heart topped off with lots of bloodwork. Twelve vials out of me. Thirteen out of her. It was a four-hour ordeal of us passing like ships in the night from oncology suite to oncology suite handed off like relay batons from one member of the medical team to another. Again, we always have to plan for the day being much longer than expected. Never leave the house without a snack pack.

To balance out the medical appointments with a fun reason to make the 3-hour trek into the city, we met up with my fellow cancer survivor friend and i2y Chief Cancer Anarchist, Jack Bouffard, to take in the Yankees vs. Orioles game in the new stadium. This is something I won't be able to do once isolation sets in ... especially the subway ride which involved us standing and rubbing buns with strangers of all sorts. It was a good

thing that my white blood cell counts were so high and that I had the Purell at the ready. Dr. Sauter was more concerned with who the Yanks were playing than me catching anything in a massive open stadium. It was only my second professional game ever and even though I'm a BoSox fan, it was a blast. When in Rome ... or New York ... .

We left NYC encouraged by the very favorable response I had to the GND chemo as evidenced by my clean scans. Some of my internal lymph nodes were still enlarged, but not showing any cancer activity. This is my body doing clean up and scar tissue developing in those stretched-to-the-limits nodes. There was just one tiny hot spot, less than a centimeter in the sternum area of my chest. It's been a stubborn area on all of my PET Scans. However, the GND (and I like to think my visualizations and exercise) shrunk it down more than 2/3 from the size it was on my July scan.

For protocol reasons my sister had to re-swab her cheeks and get further HLA typing bloodwork to make double sure that she is a DNA match. This will take two weeks to process. Her other bloodwork, which is checking for any viruses, will also take a few days for review. The plan was that in the meantime I would come in for another marathon day for body function testing – breathing, heart, dental, etc. Then, once we got the go-ahead results on my sister I'd be ready to start the transplant process. I was psyched to have two weeks when I'd have no treatment and would be feeling well. But at the same time, we and the doctor were fairly concerned with letting me go untreated for that long. With that timeframe it would mean that by the time I entered transplant it would be five weeks since my last chemo. We've learned that the cancer is quite aggressive and grew back in less than a month last time I was left naked of drugs.

Turns out that I don't need to worry about that. And, I don't need to worry about how I would spend all of that beautiful appointment/treatment-free time before the NYC move. Dr. Sauter called me yesterday to tell me that he discussed things further with the transplant team, specifically with Dr. Craig Moskowitz, a world-renowned lymphoma expert, and the conclusion was that they want to keep steady this very positive near-remission state that I'm currently in. Dr. Dailey was also conferenced with and agrees with the plan. It's just too risky to wait another week. It was reiterated that what I really need is my sister's stem cells to go after this. The GND chemo is merely a temporary Band-Aid to stop the bleeding.

So today, with half-a-day's notice, I was back at Hartford Hospital for my first infusion in the start of a third round of GND. Obviously I didn't want to go. In fact I was a very angry person this morning (poor husband) and literally had to talk myself down from throwing my ceramic cereal bowl across the kitchen floor just for the satisfaction of watching it shatter into pieces.

No one wants to go to chemo, but you do it because it is what is going to save your life. I was feeling so close to myself again: energy level rising, counts good, hair getting longer and showing some natural blonde highlights! The idea of feeling shitty again yet another time before I then feel shitty from the transplant for a very long time is not easy to swallow. But luckily, as the doctors keep telling me, I tolerate chemo "very well," which is why they're not hesitant to do this.

As long as I don't crash too hard from this infusion, we're shooting to do two weeks in a row of the chemo rather than the every-other-week regimen I had switched to so that we can keep the transplant start date sooner. This is expected now for the first week in October ("written" in pencil.) It's expected that I'll drop very low from this third cycle and will likely need transfusions but that's something that can be controlled. As "they" say: No pain, no gain, right?

Regardless, I completely agree with the decision of the Sloan doctors and it actually does put me at more ease to know we're proactively keeping things at bay – with the added hope of shrinking that hot spot altogether. I was actually very happy to get that call yesterday.

Now I'm dealing with wooziness, immediate achiness and fatigue, but the infusion today went fine. Craig kept me company and the sweet, sweet nurse, Anne, that I had the pleasure of working with today made a world of difference. So did the familiar faces and shared laughs with the secretaries and lab techs that I've gotten to know so well. I had already said my goodbyes to them weeks ago, but here I was, back again, just falling into suit. It actually put a lump in my throat. Quickly my anger simmered down and I was able to smile, very happy that we still have all 10 cereal bowls in tact.

Looking Up

Waking up this morning I did not feel like I had been lifted by a crane and dropped square on my back at some point during the night. In fact, I could open my jaw more than a crack and only my hips popped when I exited bed left.

Also helping matters, the sun was streaming through our bedroom window for the first time in days, and I could recall some vivid good dreams for a change. In one, I won some game at the casino for hitting "Double Zero" whatever that means. No one had ever done it in the existence of the game and the whole place was cheering. In this dream I had long, thick dirty blonde hair that I kept tied in a low braid which hung at my shoulder. To me, this is symbolic of good things to come.

Last night we went out to my parents' house. I took a nice, deep nap on their living room recliner while my mom dozed off in the recliner next to me while absentmindedly watching her soaps. Then I stumbled my way down the familiar hallway and continued the nap on my parents' bed. I felt my mom drop drop a soft blanket over me. Out I was until I heard the garage door opening below the room signaling my Dad's return from work. It was a familiar and comforting feeling remembering all the days that I would snuggle in for a nap on top of their bed watching "Duck Tales" and "Rescue Rangers" after school while my Mom cooked dinner until my Dad came home and the smells of ground turkey sizzling in the kitchen became too inciting to remain napping any longer. Last night it was the spicy scents of Mexican spices and the sound of crisp lettuce being cracked off the head that lured me out to discover one of my favorite dinners: "Make Your Own Taco Night".

Craig, my dad and my brother had appeared while I was napping and we enjoyed a great dinner and a little game of "Battle of the Sexes" out on the screened porch. As it got dark my sister pulled in from a long day of Park Rangering and my brother's childhood friend came down with his mom, whom I hadn't seen in years and years. We laughed at his stories of being a beach lifeguard on the South Carolina shore. Over bowls of Peaches & Cream chocolate raspberry mousse we heard about the women who would ask him to take his shirt off and pose for photos. We heard about the man who would come every day, booze it up, and tie an invisible fishing line to a perfectly shaped conch shell, set it up so that it was rolling in the tide and watched and mocked as people nonchalantly tried to pick it up while he mysteriously reeled in the line and pulled it out of their grasp. Fantastic!

We got home and I hit the pillow hard. I think the change of scenery did a world of wonders.

Cumulative Effects

It seems that the GND chemo has decided to wait until my last dose to show its stuff. It's a sneaky little bastard. Or, maybe it's the shot of Neulasta, something my post-transplant marrow has never endured. Or, it's tremendous anxiety. Oh, or maybe it's the five chemo regimens I have been on, the two autologous transplants I've undergone, and the infestation of an aggressive cancer. Most likely, it's a combination of all of this.

I've never experienced bone pain to speak of from either the Neupogen or Neulasta marrow stimulating drugs, but this time around I see what all the doctors and nurses have been talking about. The past two days have been full of horrendous pain in my back - lower and mid, in my face (primarily my cheekbones), my chest/sternum and my pelvic bones.

I remember my nurse practitioner at Yale saying that I may feel like I'm having a heart attack because of the chest pain. Though, I don't know what the onset of a heart attack feels like, I have seen people in the movies clutching their chests and I've found myself rubbing mine constantly.

When I say bone pain, I literally mean pain IN my bones. Last night while laying in bed it felt like my pelvic bones were under attack by tiny pricking needles jabbing at them from the inside. It's a dull constant pain with an occasional "spasm" of sorts when the little men with the needles come out. I won't take pain meds because they make me feel worse in the head than they help me in the body. I have however conceded to taking sleeping pills, which have helped me to sleep through the night for the first time in weeks. Relaxation methods just weren't doing it and despite all my resistance to them, the fact that my body desperately needs good sleep was more convincing then my fear of drug dependency. Now? No nightmares. No waking up from the pain. And I'm still sober enough to be able to make it to my minimum of two nighttime bathroom trips without falling on my face ... or wetting the bed.

I initially thought I escaped it, but I guess the hand and foot skin issue that can occur from the Doxil waited until now to creep in. It's by no means as severe as it could potentially be, but it still hurts. The skin on my hands and feet feels burnt and raw, and if I don't constantly lotion with the "Udderly Smooth" lotion they gave me (formulated for cow's utters), my skin actually starts to peel off. It feels like when you fall off a bike and scrape your elbow, but only the top layer of skin is left on the pavement, leaving all the little nerve endings exposed to the air. Prime set up for pain when the wind blows past it.

The fatigue is also tremendous. It comes close to how I felt after the DI-CEP. The chemo working against the cancer cells and the Neupogen working my marrow take up a lot of (wo)man power. It's my brain and my body that are so, so tired. There's no pushing through it. I've just been working on balancing and making sure that I accomplish at least one set of physical activity and one productive thing on my list each day so I don't feel like I'm wallowing through the chemo sea like a limbless anemone.

I think that the emo teenager behind the Starbucks counter yesterday thought I was a recent nut house release. I first stared at him for what felt like eternity. Then I stared at the menu behind him for another awkward eternity but I couldn't digest what it was. I literally just saw white words on a black board and held up the whole line until I could put a few of those words together to make a coffee order. As much as it irritated the barista for me to throw him off his fast track, the venti, foamy lattee of choice did help make things a little better.

The weather has been gloomy and rainy which has complemented my physical state - for better or worse. I like the onset of crisp, fall breezes, but the sun could come out any time now. I'm sure that the dreary skies are a contributing factor to my gloomy whining. Also contributing is the weight of the unknown. I still don't have a final treatment plan/timeline ... rough estimate as to when we'll be starting all the allo transplant jazz is mid-September. I have major problems when I don't have answers and next steps and I am working very hard on changing that about myself because it doesn't do me any good to freak out about what I can't control. I need to focus that energy on things that I do have influence over.

Everything depends on my Sloan doctor's review of my PET Scan, which is coming up next Thursday, Sept. 2. Everything else will fall into place after that. I have to trust the process and let go. The only problem is that it's the only thing I can think about. And if I'm not thinking about the transplant, I'm thinking about how to not think about the transplant.

Final GND Chemo

I've completed my two cycles of GND chemotherapy without any major complications and with the hope that it has put me into a sufficient enough remission to be able to jump right into the stem cell transplant process.

My final infusion was last Thursday at the Avon cancer center. This was different from my normal Wednesday rotation and that means a different cast and crew. However, I've been there so much for bloodwork and shots now – on every day of the week – that I know all of the nurses and secretaries and they all know me. The oncologists are a different story though and I had to see someone else as Dr. Dailey was on vacation. My white blood cell and platelet counts were still pretty low from my previous treatment. He was hesitant to treat me with a WBC of only 2.4. But after I explained to him the timeline we are on, the aggressiveness of the cancer, and the next hurdles I'm up against, he conceded. He agreed to treat me with the understanding that I'd have to get a dose of Neulasta the next day – the long lasting super-dose form of Neupogen to help me bounce back. I told him I could handle it.

Luckily, my childhood friend and one of the most hilarious people that I know, Jess, came with me for the day o' fun. We've known each other since elementary school days, from games of "Red Rover" at Camp Maria Pratt Girl Scout camp to sneaking to high school parties together. Having her at chemo made the five hours go by so much faster.

Like Kristen, Leanne and Thea previously did, Jess also brought sacks full of snacks. The doc joked that she was part of a moving crew. So we munched on Poppycock and talked as she learned firsthand about the chemo process and what it's all about. We lucked out and once again got a private room, which was good as we were probably obnoxiously loud. We kept the door shut though. I'd pass the "community" chemo room on the way to the bathroom each time and would shudder at the eerie silence of patients in there sleeping in their chairs or reading in silence. You could hear a pin drop except for the deep whir and occasional beeps of the IV pump machines. For me that is torture. I much prefer my chemo sessions set to laughter and music.

Jessica knows this and made the most hilarious game for us to play. It involved guessing the status updates of our Facebook friends. She'd read an update and I'd have to guess who posted it ... some were new posts, some from a few months back, but all hilarious. I couldn't believe how many I remembered and realized, sadly, how much time I spend on the site. Even with major chemo drug brain I believe I got about 93%.

We went through the whole pre-med and three drug scenario one last time, complete with the ice packs tied to my feet and hands during the Doxil drip. Everything went as smoothly as it could though afterward I was pretty shot.

That night things really started to set in and I felt very woozy, swollen and tight throughout my whole body. It seemed that the cumulative effects of all the chemo really set in. It felt like all the negative aspects of being very drunk. Not a good buzz, but instead a room-spinning one. All I could do was lay like a blob on the couch and watch trashy television a la Jersey Shore.

To be honest, things really haven't improved much since Thursday. I am very, very, very fatigued. The most menial of tasks require a lot of effort and get my heart pumping. Once I do lay down I can hear and feel my blood coursing violently through my veins as my heart works in overdrive. I mostly hear it in my ears, a thunderous pulse. I wear the fatigue in my throat and chest which each feel swollen and ravaged. At times it is hard to talk at a normal volume because it strains too much. My hip and hamstring muscles are constantly knotted and immediately shrivel back tight against my bones even after the longest of stretches.

But I am here and I am done with this current protocol – now the fifth chemotherapy regimen under my belt. For that I am grateful and hopeful that it did its job. I'll be back in NYC Sept. 2 to find out the answer from a PET Scan.

A Spoonful of Sugar Helps the Medicine Go Down

Mary Poppins did know what she was talking about. Although I always found that whole scene with the fabricated chirping bird to be a little bit creepy.

I've opened up my inner chemo circle and in doing so enjoyed the company of some more fab escorts for my GND chemo infusion this past week. M

y "sugar" was my friends from high school, Thea and Leanne, who spent the better part of the day with me as the chemo dripped.

It's no replacement, of course, for my venerable mom and husband who have endured many a chemo session, but I think that switching it up has made it easier on me and them. I don't feel guilty taking up another one of their Wednesdays and they don't have to worry about thinking of more creative ways to entertain me. If you asked me last year if I would ever let anyone besides them come with me to chemo the answer would most certainly have been "no." But a lot of things change in a year; one of the biggest being that I'm more comfortable with myself and with my situation and therefore much more willing to let my guard down and to accept the help that's been offered all around us.

In this case the help came in the form of a cushy ride, a trunk load of delicious treats – a bag and a cooler full, Trivial Pursuit, magazines upon magazines, and two of the sweetest, most sunshiney people I know. While snacking on Fig Newmans, fruit, Greek yogurt, cookies, granola bars and more, talking about

Leanne's wedding plans, and failing horribly at answering trivia, the afternoon flew by and the whir of the IV machine didn't give me shivers once. Every single nurse remarked on the "party" we were having in our private room and were wowed by the size of the snack bags. If a nurse got a trivia question right, she'd get a chocolate nugget. We were quite the antitheses to the normal chemo crowd and – at least I hope – it was refreshing.

Wednesday night was rougher than it had been after the first two GND infusions but I just moaned and slept it off while Craig was on cooking and drink refilling duty ... a job he's quite used to on chemo nights. Thursday was also tough. I was very, very tired and incredibly achey. The feelings were reminiscent of ABVD days when my muscles felt like they were being shrink wrapped to my body. No nausea, just angry body. Most of the day was spent on the couch with movies streaming. On Friday, all was well in the world again.

I've been back to yoga class and so proud of what my body's still able to accomplish and patient when I need to modify a pose. Craig and I bought kayaks and this has become a new favorite way for us to spend time together. We found mine on Craigslist from a guy right down the street from us. It is bright yellow and decorated with outdoor adventure stickers and lots of scrapes on its underbelly. I look like a hardcore kayaker in it. But mostly, we lock paddles and Craig and I create a flotilla down the Farmington River throwing in some sprint paddle sessions here and there. Like yoga, I enjoy it because on days that I'm feeling strong I can make it a workout and paddle upriver. On days that I'm feeling more fatigued, or when my low platelet count forces me to be uber cautious about bruising, we'll drop a car downriver so that we only have to paddle with the current then drive back to the drop-in spot. It's so peaceful on the river and seeing it from that vantage point opens up a whole new world to us.

It may sound strange with everything that's going on, but this has been one of the best summers I can remember. The weather has been absolutely gorgeous. The barbecues and get togethers with friends have been abundant. Time with family has been full of laughs. Our front porch rocking chairs have gotten much more use. The hammock is crazy indulgent. Sammy has been super cute. Craig has been super sweet. The veggies extra crisp, the ice cream extra creamy, and the fruits extra juicy.

The Sisterly Bond Runs Cell Deep

Today was treatment 2 of cycle 1 of GND chemo. One cycle down.

It was a late appointment so I had the morning to be able to sleep in a bit, do some yoga, and eat a good breakfast, which was nice. My mom took me in to the old stomping grounds at the cancer center in Avon. It felt at once good and depressing to be in such familiar surroundings.

We had a thorough and informative meeting with Dr. Dailey during which Craig arrived after his summer teaching gig. The doctor was thrilled with my blood counts and congratulated me on how much they maintained. My white blood cells are only slightly lower than normal and my platelets and red blood cells are strong as ever. And this is without the aid of any post-chemo mobilizing agents like Neupogen. We'll watch my counts closely at the end of this week and during next to see if they do end up dropping, which wouldn't be unexpected.

He explained again how much he liked the GND regimen for Hodgkin's relapses and was happy to hear that I experienced essentially no side effects. He's taking me off all steroids and the Allopurinol I was taking to prevent uric acid build up. We are very in sync when it comes to taking the minimal amount of drugs possible. We talked a lot about the next steps and why it is necessary to move forward with an allogeneic stem cell transplant. Even if the GND puts me into a nice remission as planned, it will not cure me. It is highly likely knowing the pattern of this cancer that it will come back and we need something besides chemo to yield a chance for long-term remission (there really is no "cure").

I understand now in more clarity that the allogeneic stem cell transplant is a whole different beast from the autologous transplants I have already gone through. With the auto transplant it was the incredibly high dose chemo that was killing the cancer cells. The stem cells that my marrow created and that were reinserted in me were merely a rescue mechanism to repair my destroyed marrow and create the blood cells that I needed to survive. This time around, the stem cells used from the donor in the allo transplant are the treatment. It's those stem cells and the new immune system that they'll build within me that will be killing the cancer. This is called the Graft vs. Lymphoma Effect. The high dose chemo I'll receive is just to suppress my bone marrow enough to allow someone else's cells into my body without it freaking out and rejecting them.

We talked extensively about how the strength of the donor match is actually much more important than the particular chemo cocktail chosen in getting me toward long-term remission. And, the further away from perfect the donor is, the higher the increase is for developing the potentially life altering and/or life threatening Graft vs. Host Disease.

Dr. Dailey is extremely supportive of gathering other opinions from several leading cancer centers with strong transplant programs. He helped us to develop a list of questions to ask and helped us to better understand what to look at when choosing a program and how important it is to encourage all of these doctors to talk to one another as we all decide the best route for me to go. Regarding experience in various programs Dr. Dailey noted the uncomfortable reality that no matter where I go, the numbers of the patients that they've seen with a case like mine are going to be very low. Studies are nearly nonexistent, some with as little as 10 patients, and much is still unknown as to success tactics in allo transplants for someone with a Hodgkin's relapse as aggressive as mine. Nonetheless, there are success stories and that's all that matters. I will be added to the record books.

Into the private chemo room we went. I stared at the photograph of fall foliage in a lake reflection that I had stared at many, many times before during my 12 ABVD infusions and countless appointments in between them. My nurse Diane administered my chemo and there is certainly something to be said about being back with someone whose cared for me for my entire journey. She calls me "Kar" and she knows the ins and outs of my port and most importantly she knows all the shit I've seen.

I think we're all getting a little tired of the chemo scene though. Back in the day we'd play lively games of Scrabble Slam or online trivia. Today, my Mom dozed off in her chair while I read and Craig took advantage of an acupuncture session. This is not to say that the mood was drab. We're all very hopeful and had a lot to talk about regarding the upcoming treatments and appointments we have with other leading Hodgkin's experts. It's just all very, very exhausting and as hard as it is for me to get hooked back up to chemo again, I think it's just as hard for Craig and my mom, my longtime chemo companions, to again have to watch me wince as my port won't give blood and as my eyes begin to bulge and my face flushes as the drugs enter. We were all so hopeful that my cancer patient days were over. But, that's not the case and that's life so it's time to face it – balls to the wall. I held and rested my feet on ice packs once again as the pretty pink chemo dripped and the other drugs all went in without a hitch.

At Dr. Dailey's suggestion I gave a call to the Yale Allo Stem Cell Transplant Coordinator to check in and see if the results had come back on my brother and sister's HLA testing. They had swabbed their cheeks over a week ago to be tested against my HLA type to see if they are a matching donor. HLA stands for Human Leukocyte Antigens. These proteins are found on the surface of nearly every cell in our bodies and serve as kind of our cellular fingerprint. The HLA proteins allow our own immune systems to distinguish what cells belong in our body and which don't, helping it know when to attack invaders. There was a 25% chance that either my brother or sister would be a match to my HLA type. A sibling is a highly preferable donor. I could not wait any longer on the answer and wanted to get a move on the donor registry search if it didn't work out with my siblings.

"This is Sue," she answered.

"Hi Sue, my name is Karin Diamond. I'm one of Dr. Cooper's patients and I'm calling to ..... . "

Sue cuts me off.

"You must have ESP," she says. "Dr. Cooper came in this morning to see if the results had come in and we were just going over them. Your sister is a perfect sibling match. Congratulations!"

Some excited nonsensical garble came out of my mouth in reply as my heart jumped out of my chest. A huge smile spread to Craig who was across the room and we both rejoiced. She told me that my brother's results were still pending so there is a possibility that he might be a match as well and that they'll decide which is stronger, but that no matter what, my sister is as ideal of a match as a match can be. She explained that I'd get a call with more info and some next steps but I can't say that I remember one word. I was just so thrilled and incredibly relieved. This is a very, very, very good sign of positive things to come.

We pulled Dr. Dailey in from the hall when he came out from meeting with another patient and told him the news. I have never seen the man smile that wide. He was just as, if not more, happy than we were. Maybe because he better understands how key the perfect donor is to the process. I heard him running around telling all the nurses and he was literally bouncing in his step and kept mumbling: "What wonderful, wonderful news!"

"It's tough for the donor; she's got to get all of the shots," one of the nurses said.

"Oh don't worry, she's tough," I shot back. "She played rugby in college."

"Perfect," said Dr. Dailey, still beaming. "Tell her it's just like getting into a scrum."

I called my sister close to 85 times and of course today of all days her cell battery died while she was at the beach and didn't have a charger. I did some sleuthing, found out who she was at the beach with, Facebook stalked them, messaged the friend and asked her to have my sister call me A.S.A.P.

An unknown number came through on my cell and I knew my stalking had worked.

"This is either really good news or really bad news," my sister said.

When I told her, she was ecstatic to be able to help her big sis ... more than help ... to save my life.

I believe the exact words were something like: "I had a feeling! That's F*&%ing Awesome!"

Classic Kristen. I love her.

GND Chemo: Infusion One

And so it began again. The start of yet another chemo regimen. Another cocktail off the extensive chemo drink menu. Like the soda drink options at Sonic, the combinations are endless. We're hoping that it's this one that does the trick.

Last Thursday I was escorted to chemo by my childhood best friend, Kristen. My parents were on a much needed vacation and Craig was teaching at his summer job. I didn't want to go the first round alone not knowing how I would react to the drugs, nor trusting myself to be the only one to hear the ins and outs from the doctor of what the regimen will bring. Kristen and I have been close since I threw up all over her Cabbage Patch notebook in Miss Arel's first grade class. She's the kind of friend that'll be there for you in a heartbeat. So when I called and told her I needed a designated notetaker and chemo companion she took the day off and was on board.

She got to witness my chemo morning procrastination routine although I saved her the hissy fit my mom usually receives. I was still in the shower when she showed up and prolonged packing my snack bag until the last possible moment. It takes a lot of motivation to psych myself up to get to chemo after already going through so much. It is certainly no longer a novelty and I always go back to the metaphor of knowingly flattening your palm onto a hot burner ... but it's something that has to be done. At least I am able to receive this chemo locally in Hartford so as to not add the long travel time into the scenario. And even more placating, it does not require hospitalization.

To bring more anxiety to the scenario, Dr. Dailey was on vacation. I suppose this is allowed, but I don't like it. But being the caring oncologist that he is, he spent the morning on the phone with the doctor that I saw in his stead and filled him in on my biopsy results and the regimen that he wanted to begin.

We learned that the biopsy revealed – as expected – classic Hodgkin's disease, nodular sclerosis subtype. I was relieved that the cancer had not morphed into some incurable or unknown type. I'm familiar with this invader. With that said, we are going with a regimen called GND, which features the drugs Gemzar, Navelbine, and Doxil. Used in combination, these drugs have been proven in recent studies to be very effective salvage therapy for patients with Hodgkin Lymphoma who have failed chemotherapy or an autologous stem cell transplant. This is referred to as my "salvage" chemotherapy meaning that it is what we hope will immediately eradicate the disease and put me into a good enough remission to be able to head into the allogeneic transplant. They're standard line chemo drugs so not nearly as intensive as what I've been used to receiving. Always in the back of everyone's mind is to be delicate with me as my body is still reeling and recovering from the very recent bone marrow bashing that was my transplant.

We were told that my hair might not fall out from this regimen, which is fantastic as it's been growing at an amazing clip. I once again have a full set of eyebrows and my eyelashes are longer every day. My hair now looks like a very, very short buzz cut. One of the drugs, Doxil, can cause Hand-Foot Syndrome which results in redness, blisters, burning and flaking on the skin of the hands and feet. Other than that, the possible side effects of each of the drugs are pretty standard – they'll lower my white blood cell and platelet counts, fatigue, achyness, malaise, nausea, yada, yada, yada.

The regimen works in a 21 day cycle with chemo once a week for two weeks then two weeks off to complete one cycle. I will complete two cycles then we will check a PET Scan to see what the progress is and determine if another cycle is needed. This will happen in about five weeks or so.

In total, the whole process took about five hours, similar to the timeframe I used to spend at the cancer center during ABVD. The anti-nausea pre-meds take some time then two of the drugs drip over a half-hour while the third drips over an hour, then there is the fluid I need to flush through and the waiting between drug changeovers.

To prevent the possibility of contracting Hand-Foot Syndrome, the nurse had me rest my feet on ice packs and hold an ice pack between my hands during the hour that Doxil was flowing into my port. Quite contrary to the toxic substance that it is, hanging in the bag it looks like a refreshing bladder of pink lemonade Crystal Light. It's the most prettiest looking of drugs I've received to date.

Kristen and I were given a private room in Hartford with its walls covered with UConn and Yankees memorabilia and knick knacks galore – teddy bears, bird houses, plastic figurines, angels. There were pictures everywhere of someone's children and lots of motivational placards and posters. It felt a bit like getting chemo in a flea market. A handwritten note above the clock read in Sharpie: "The last time the Red Sox won the World Series" with an arrow pointing down. I didn't get it, but it was obvious that whomever decorated the space was on the pinstripes side of the rivalry. This is a stark contrast to the cool colors and meditative photographs that decorate the rooms in both the Avon Cancer Center and Smilow down at Yale. However, the double wide recliner was comfortable and my nurse was efficient, friendly and informative. A great combo.

We chatted the whole time catching up on funny middle and high school memories, bringing up random people that we haven't thought about in forever. We snacked on treats and rehashed the chemo plan until we both decided we had a fair understanding of it all. The time went by very quickly and though it's of course not the ideal situation, chemo is a fantastic way to catch up with old friends.

Fast forward to today and I have managed to avoid the rashy skin symptoms and really any other symptoms at all. Sure I get tired and have had some of the familiar feels like a flogging back pains reminiscent of ABVD treatment, but nothing has been even close to debilitating. The fact that the regimen orders a two-week rest period tells me that the drugs are pretty powerful, but I suppose it's all relative now. Having undergone chemotherapy that left me incapable of standing up or mustering the energy to eat at times leaves me with a pretty high tolerance. Even so, I'm impressed with how my body has handled this round after being so compromised just weeks ago. There was a high probability that this could have just flattened me right out.

But in fact, this week has been filled with lots of get togethers with friends who have stopped by, cookouts and fire pits, hikes and exploring. No matter how I feel, I've been walking every single day and am getting back into a yoga class routine. I drown myself in water to flush out the cancer cells that I visualize breaking apart within me as the chemo does its job. The healthy eating continues, our crop share at a local farm helping tremendously with that as we have access to so many fresh-from-the-ground veggies. I may even venture to say that I'm getting to be a decent cook ... and enjoying the cooking process.

Tomorrow I am back for more chemo already and can only hope that it goes as smoothly as it did the first time around.