Thursday, August 26, 2010

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.

Wednesday, August 25, 2010

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.

Monday, August 23, 2010

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.

Friday, August 20, 2010

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:
  • 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.

Monday, August 16, 2010


What I need to remember and to focus on is how far I've come and how well I've done. Being that it's me wearing these shoes it is easy to forget that. It's not in me to gloat and it's unnatural for me to think about the wealth of tools that I have in my arsenal. However, I need to push humility aside and continue to harp on what I've got going for me because it's a lot. Much more than I've got going against me.

First and foremost is that I do feel that fear and anxiety but I am able to use it as fuel for my fire that works for me rather than a fire that works against me. I am not sure how my mind has stayed as stable as it has through all of this, but I know that for that I am so lucky. Granted, it is extremely crowded with everything that it means to be a cancer patient and I often find myself with no room left for anything else.

I'll have to talk myself through tasks to get them done and multiple times a day I'll find myself in a room looking for something with no idea why I am there. I tend to start things and have a real tough time finishing them, but I am still able to get them done ... just in my own time. My memory has suffered some and extended brain farts are commonplace. However, ask me to explain what blood cells do in the body or the names of all the drugs I've received and I've got the answer within moments. The fact that I feel comfortable and educated with what is happening and what will be happening to my body must give me some kind of leg up. Yes, maybe everything else in my brain suffers, but this is what's important right now.

I have no comorbidities, meaning that besides this damn cancer I am perfectly healthy. I don't have heart problems, no high cholesterol, no breathing issues, no diabetes, no circulation problems, etc. This is all obviously in my favor going into transplant. Because of this fact, my Sloan doctor said that my chances of transplant success are closer to 50%.

Plus, I have to look back and realize that I've already been through two auto transplants, which each included some serious, serious chemotherapy and I came out relatively unscathed. In fact, I was ready to go back to work a month afterward. So far, the only permanent change I've had since then is two perfect white lines across the pink on each of my fingernails. Everything else is still in tact. I haven't lost any limbs nor developed any strange bodily functions. Yes, my endurance has taken a hit, but I think that can be expected after nearly a year-and-a-half of chemotherapy without more than a few week's break.

Physically, I'm still strong. Nothing like I was pre-cancer, but I can get into dancer pose with the best of them, kayak and walk with the rest of them, and still rip up a wedding dance floor as evidenced at my Uncle's wedding this weekend. My body still has a lot of fight in it and with gentle care I believe that I can keep this machine running.

I have a perfect sibling match. Having my sister as a donor creates the most ideal situation. There is so much hope that her cells will easily move in and push the unwanted cancer cells out. Plus, who better to share this experience with?

Then there is my huge support system. Mighty and unbreakable, I have a fortress of love and healing all around me. They're there when things are going well and when they are not and the value of knowing that I have that backing can't be quantified.

This all gives me hope that I will defy the statistics. People do get cured from this and one of those people will be me. It's just taking a little longer and we're having to get a little more creative than originally expected.

Friday, August 13, 2010


Sometimes it feels like my chest will explode with anxiety. Most all the time it feels like my entire body is heavy with the weight of it all. It makes me scared of the idea of lying down –resting – for fear that if I do, the heaviness will pummel at me and crush me into a million tiny pieces. If I keep moving, the fear can't catch me. I have to be sure that I'm always strong enough to be able to somersault out of the way when I see it driving at me from above.

This fear isn't the adrenaline driven type spurred by cheap horror movies or hokey haunted houses, nighttime games of hide and seek, or the menacing Ouija board messages that kept us up at sleepovers. It's not the fear that takes over when a crab grabs hold of your big toe underwater or the one that takes over you as the roller coaster wheels click painfully slowly within the track as it ascends the steep uphill.

It's instead a fear that can take over my mind, permeate all of my thoughts and even wriggle its way into my chest until it forces my heart to beat in overdrive, tightens my muscles taunt, and sends my stomach into
convulsions. That's if I let it. Sometimes even the happiest music and the most seemingly perfect distraction are not powerful enough. Sometimes if I'm very happy it can be worse. This is when the fear creeps up and whispers villain-like in my ear: "This may be the last time you ever see this friend. Enjoy it now, soak it up, it's all going to be over soon." If people are too nice or situations too perfect it can set off a torrent of mixed emotions.

What is it that scares me? It's that 80% of Hodgkin's disease patients are cured with the first line of treatment. I'm on treatment line 4. It's that 2 out of 3 people don't make it through this type of transplant. It's that only 30% are cured (aka long-term remission) without any complications. Treatment related mortality is 15-30% in the first two years post-transplant from Graft vs. Host Disease (GVHD). 40% of patients end up with acute GVHD with symptoms from chronic arthritis, skin tightening, rashes to kidney failure or loss of muscle control. 20% live past the transplant but have another relapse and deal with the disease with palliative chemotherapy.

According to the Dana Farber doctor I met with, whom I think had a PhD in instilling fear (we'll call him Dr. Grim Reaper): "The lymphoma is my worst enemy." In short, even though this transplant has its risks, if I do nothing, this lymphoma will kill me.

It scares me that the type of lymphoma I have has all three factors identified as high-risk: b symptoms at time of relapse, disease coming back in more than one site, and relapse in less than a year out from treatment (try a month in my case). A place like Dana Farber has only seen 40-50 patients like me in the last 10 years.

What quells the fear? Talking to people on the other side through
mentorship programs. Doing the things that I enjoy and using every ounce of strength to kick those negative thoughts in the ass when the do creep in. Mostly this is accomplished by removing myself from the situation. When I hear these doctors outlining the grave statistics for me I tend to see myself as an outsider thinking: "Wow, this is what it's like for a doctor to give a patient some really hard news. This poor family. That poor girl." No matter what, it's not me. When things get really serious, like with Dr. Death, I just focused on the way his lips curled up into a bow like the Grinch who stole Christmas. For better or worse, not internalizing some of the really scary stuff has helped me to keep sane. Craig is the same way. A disturbing meeting with the doctor at Yale was followed not by tears, but instead by a balloon head fashioned from a medical glove. This was the funniest thing we'd ever seen.

There is nothing that I can do to change odds. I can't make the science better and I have to just shrug when I hear these brilliant doctors say to me that unfortunately, they just don't know why this happens and why some people are cured and some are not. There just aren't enough studies or advancements yet. When 80% of people are cured of Hodgkin's (the "good" cancer) at the onset of treatment, it seems that us in the other 20% aren't left with too many options.

Wednesday, August 11, 2010

Sisterhood of the Traveling Cancer Pants

Some people like to hit the historic landmarks or the best Thai restaurant in each city that they visit. Instead, we have been on a whirlwind cancer center tour. A tour that is quite exhausting and daunting. After the cancer recurred again, and I was told what a small patient group that I am in, we knew that second and third opinions were a must. Making sure I am being treated in the absolute best place for my needs is of the utmost importance.

When people talk about living in Connecticut they often say, "It's great because you can easily get to both Boston and New York." This used to anger me that everyone would overlook our own capital city, but for this purpose I couldn't be happier that we live so close (close being over two hours) to two cities that play host to two of the top cancer centers in the nation - the world, even.

Over the past two weeks Craig, my mom, my dad, and I (or some combination of the group) have traveled to New York City twice to visit with a lymphoma specialist then a lymphoma specialist/transplant doctor at Memorial Sloan-Kettering Cancer Center; back down to Smilow Cancer Center at Yale New Haven Hospital; and to Dana Farber Cancer Institute in Boston. My medical records, scans, pathology slides reached each facility before I did so they had the chance to review my case and present me with their plans. The assuring thing was that all the experts agreed that the allogeneic stem cell transplant with the use of my sister as donor was absolutely, no doubt the way to go. That no chemo will cure the type of lymphoma I have and that this immunotherapy is the best shot. What shocked us all a bit was how markedly different the outlined approaches and protocols were in which to accomplish this transplant.

Ultimately, the decision was very easy and unanimous (as determined by secret ballot). I can't decide on the type of granola to buy at Target without having a mental breakdown, but this life dependent decision was so obvious to me and my family. My gut spoke to me very strongly on this one. New York City it is. I've always loved the Big Apple and its incredible energy. Granted, I will only be able to watch it from my hospital room window for much of this process, but I'll still be there.

Sloan-Kettering is a world class destination for cancer care, consistently ranked as one of the top, if not the top, cancer centers in the nation. Its transplant program is extensive and they have as much experience and volume as I'll find anywhere in treating those in similar situations to me. Last year they performed 120 allogeneic stem cell transplants, about 15 of those being patients with Hodgkin's disease who relapsed after an autologous transplant as I have.

I especially liked the team approach that their transplant program takes which features an 18-person board of transplant doctors that discuss the developments in each oncologist's cases. My doctor will not be working in an island, but will constantly be conferring with other brilliant minds. Even with the team approach I will still have my assigned transplant doctor who will be with me all the way through. I immediately felt comfortable and confident in his presence. He is smart, straightforward, positive and easy to talk to.

They also have a very comprehensive program focused not just on the medicine but also on treating the whole person with an extensive Integrative Medicine program offering meditation, massage, music and art therapy, etc. They also have a strong program for my sister as donor offering her the tools that she'll need. I was impressed with how established and organized everything seemed. Lots of structure to the program which is an environment that I thrive in. I like rules and protocols – especially when it comes to my health.

Another huge selling point was that I will be on a floor devoted to transplant patients only. That means that all of the nurses and other caregivers on the floor are highly skilled in dealing with transplant patients and the unique needs that we have. This is incredibly assuring to me as I will be spending at least a month as an inpatient and being sure that the nursing staff is top-notch was extremely important to me.

Oh, and it's where all the celebrities go. Willy Wonka (Gene Wilder) had a stem cell transplant there. I saw his pic in the transplant survivor's slideshow. And, my friend Ethan Zohn, Survivor Africa winner had his auto transplant – and all his previous Hodgkin's treatment there. We talked for a while last week and he had nothing but positive things to say about his experience at Sloan and he's doing so well now that he's training for the NYC marathon. That gives me a lot of hope.

In addition to all of these aspects, we were also all most comfortable with the transplant protocol that they offer. Yale's treatment plan made me wary as they wanted to hit me with more high-dose chemo, which adds a lot of risk as I am so close out from my two auto transplants and this could leave me open to more infection – or worse, there'd be the chance that I wouldn't be able to recover. Sloan instead uses a low-intensity lead-in chemotherapy. At Dana Farber, also a world-class cancer center, my biggest turn off was that their allogeneic transplant patients are treated as outpatient in the recovery phase. I didn't like the idea of recovering out of the hospital as there is such a risk for complications (it's certain that there will be some ... we just won't know the gravity) as my sister's cells begin to graft in my body. At Sloan I will be monitored 24/7 until the initial grafting is complete.

Another appealing part of the treatment plan at Sloan is the use of low-dose, full-body radiation. This was something that neither the Dana Farber nor Yale docs suggested. The radiation is used to complement the chemo in its efforts to suppress my immune system enough to let my sister's cells in. It also will have some possible cancer killing effects, something that is hugely attractive since obviously the type of lymphoma I have is resistant to chemotherapy. I've never had radiation to this point because the disease has never been in one place that they can target. It always comes back in multiple areas, but this low-dose full-body hit may accomplish something, and something is better than nothing. Many of the doctors we spoke with said that Hodgkin's is highly sensitive to radiation and Dr. Dailey explained to me that it works completely differently than chemo in the way that it fights the cancer. We like this premise.

It's certainly a lot to take in but I am extremely confident in this decision and am very hopeful that this treatment plan will be successful. Though I'm sure the treatment would go well no matter where I chose, this is where I feel most comfortable in a crazy uncomfortable situation. From the parking attendants to the secretaries, everyone was friendly and helpful. The statistics of my case are scary and daunting and it was tough hearing them over and over from each doctor, but I'm trying to stay focused on the things that I have going for me, not the negative aspects of my rare form of disease.

Now that this decision is out of the way it's lots of logistics to come. Lots of upcoming tests and NYC trips. I'm looking forward to getting a more concrete plan in place. Just one more local GND chemo session to go then it's off to the allo transplant races.

Sunday, August 8, 2010

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.