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.

Human Generosity is Astounding

This weekend I was brought to tears several, several times. Me, who is not a crier. And no, I was not crying out in pain, frustration, fear or anger, but instead out of pure love and appreciation.

Craig and I, as well as everyone who got to bear witness, were so overwhelmed by the outpouring of support at the stem cell donor drive held in my honor this weekend. Under the leadership of my mom's former colleague, Ginny, a tremendously giving (and organized) soul whom I hadn't seen since high school, the day went without a hitch.

There were so many friends who stepped up to volunteer, to organize auctions and raffles, a bake sale and "Team Karin" t-shirt and bracelet sales. Our friends and my mom's nursing friends were there volunteering to pack HLA testing kits, to help people get swabbed and to help them fill out health history forms. In fact, 156 new people were added to the National Bone Marrow Registry because of this event. We can only hope that that means many, many matches for those in need of a donor. Even those who are already on the registry, or unable to donate, were there in full support.

Elementary and high school friends, four of my elementary school teachers, family friends, Aunts, Uncles, and our Grandmas, my high school volleyball coach, boss, and attorney all showed up. Though delayed by extensive traffic, even my college roommate and her husband made the trek up from Virginia to show their support. And it wasn't just people that knew me, Craig, or our families. There were perfect strangers there as well, willing to step up and do a good thing for someone else.

I heard many stories of successful stem cell transplants and many pep talks and outpourings of faith and positivity that I will come out strong on the other side of this. And it was reinforced over and over how fortunate I am to have my beautiful sister (or "cell mate" as she's coined) to take this next step with.

Early in the day a man and woman in their early thirties came up to introduce themselves to me. The man was balancing a boy of about three years old on his hip who dug his face into his dad's shoulder when I waved and winked at him. His wife explained to me that this young dad also has Hodgkin Lymphoma, but that unlike me, he does not have the life-saving stem cell match that he needs.

He has been waiting for more than a year to get the chance at an allogeneic transplant – his last treatment hope. His face was ashen and sunken and you could tell that all the chemo and the anxiety had taken such a toll on this young family. He had relapsed four times and already had an autologous transplant which did not cure him. Despite all of this, they were there and were so appreciative that the event was being held and so happy to have so much awareness spread about the donor need.

They are now just continually trying different chemo regimens to keep the lymphoma at bay until a match can be found for this man. The woman's eyes welled as she told me that the doctors are running out of drug combinations and that they are at the "end of the rope." I had no words but to say to them that I will send them light and love every single day and that I hoped with all of my heart that his HLA match was there in that room. He looked back at me with beaten, sullen eyes, but I could see that he still had that deeply imbedded glimmer of hope. I'll never forget their faces.

It was moments like that which happened throughout the day that made me so appreciative that I was able to get myself there. No, I did not feel well. No, my counts hadn't recovered, but I wanted to be there to tell people in person how much it meant to me for them to register, to volunteer, to donate.

Flying on pure adrenalin from the kindness all around me, I would take a seat when the room started to spin and my knees started to get weak. I stuck as well as I could to the "no hugs/fist bumps only" policy, carrying my mini Purell bottle in hand for fear of contracting anything.

At one point I found myself alone on a chair. Probably the first time all day that I wasn't being shuffled from reminiscing with an old friend to meeting someone new to huddling with my family. The raffle prize and auction winners names were being called and as I watched the hundreds of donated prizes go into the hands of these generous people it just all took hold. My shoulders started to shake and my lips quivered uncontrollably until I couldn't hold the flood gates any longer. So much was being done to lift our burdens – financially, emotionally, spiritually.

I looked around at all the faces of those who had given up a beautiful summer Saturday to be on their feet – all day – on the unforgiving concrete floor of a firehouse simply because they care about us. The reality of that was just overwhelming ... a good overwhelming.

A huge thank you to everyone involved.

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.

You Have the Power to Save a Life

Friendly reminder and shameless plug in the spirit of stem cell recipients-in-need everywhere.

Tomorrow is the Karin Diamond Stem Cell Donor Drive, which my friends, family friends, and family have put a tremendous amount of effort into organizing in my honor. Our hope is to expand the National Bone Marrow Registry with as many new people as possible so that anyone out there looking for a match has an increased chance of finding one. There will also be a bake sale and a raffle/silent auction. Plus, lots of great people and positive energy. If you cannot make it, you can always order a kit online and register that way. All the information about what it means to be a stem cell or bone marrow donor if called upon is on the registry's website.

Here are the event details once again:

Karin Diamond Stem Cell Donor Drive

Saturday, August 21, 11 a.m. to 3 p.m.

Harwinton Firehouse, 158 Burlington Road (Route 4), Harwinton, CT

Hope to see/meet many of you tomorrow! I hope to be there for as long as I can. However, my immunity is low so I'll be instituting a "no hugs and kisses" policy. Fist pumping only.

If you are coming from afar and want to make a day out of it and do some exploring, here are some Litchfield County sight seeing suggestions (some of my favorite places from childhood - well, not the winery - as this is where I grew up):

Outdoor Activities:

• Great hikes, walking trails, kayaking/canoeing, biking: White Memorial Conservation Center
• Beautiful gardens, hiking and walking trails, historic home, bird watching. One of my favorite places in the world: Topsmead State Forest

Food/Drinks:

• Connecticut Wine Trail. Tastings and such: Haight-Brown Vineyard
• Cambridge Brewhouse: Microbrewery in Torrington with great beers and a good menu
• Dos Amigos: Small, very casual Mexican joint in Torrington. Cheap eats and great chimichangas.
• Bachis: Fantastic Italian and nice outdoor patio to dine on (Torrington).
• Historic Litchfield Center (follow Route 118 from Harwinton): you can walk or picnic on the green or peruse the cute shops and enjoy a great meal at the many downtown restaurants.
• Peaches & Cream Ice Cream: Arguably the best ice cream spot in Connecticut (right up there with Simsbury's Tulmeadow Farm.) Craig and I both scooped ice cream here and it's actually where we first met circa 1998.