Saturday, July 31, 2010

Nadir, Nadir

I like saying "Nadir Nadir" in the "Nanu Nanu" voice of Robin Williams in the late 70s TV show "Mork & Mindy." I used to watch it on TV Land when I was little. Somehow it seems less menacing and makes me laugh in my head when I think of it this way.

Nadir is the term used to describe the time between rounds of chemo. It's when a chemotherapy patient is at his or her lowest. I never really heard anyone use it until recently but now I hear it all the time. I have been wallowing in my nadir all week. For me that has meant very low blood cell counts and with that comes very intense fatigue. My counts have been as bad this week as they were good last week.

How low is low? My white blood cells reached a low of 1.0 K/uL (reference range 4.1-10.9). My hematocrit, which indicates the amount of red blood cells, dropped to a low of 23.3% (reference range 37-51%). My platelets hit a new personal record dropping to 12 K/uL (reference range 140-440 K/uL).

This was a sudden and deeper than expected dive which has required Neupogen shots every day this week, a transfusion of two units of red blood cells on Thursday, then a transfusion of platelets on Friday. It is now Saturday and I am back in the hospital (as the clinic is closed on the weekend) to have my blood checked again and to get another Neupogen shot. This is all in an effort to assist my bone marrow (which is still recovering from the two autologous transplants) in bringing me back up to snuff so that I can receive more chemo as scheduled on Wednesday. Then the process starts all over ... .

When my red blood cells are low that means that the oxygen I need is not being efficiently carried around my body. When my platelets are low this means that my blood cannot properly clot nor heal cuts or bruises. The combination leaves me very weak, very tired and very mentally flighty. I can't handle more than one task at a time and I forget things just moments after I heard them. After a slow walk up the stairs my heart is racing and my breath is short as my body has to work extra hard to perform such a daunting task. I get so tired it hurts and I can do nothing else but lay there like a blob. Oddly though, sleep is hard to come by, I think because I'm so beyond exhausted. I'm haunted by nightmares and can't sleep through the night without having to go to the bathroom as my body is doing so much purging. My new plan is to try and choose one thing every day that I really want to do and save my energy up for that. i.e. if I know I want to take a walk then I can't expend all my energy doing laundry and dishes that morning. Otherwise, by 2 p.m. I'm spent. Dishes and laundry have yet to be the day's choice activity.

Getting out of this nadar requires a lot of time and a lot of waiting. It is a beautiful summer day out and here I am waiting for blood work results. It's been two-and-a-half hours. It's very likely that I won't need a transfusion but regardless I still have to wait and see that for certain.

It's frustrating at times because when time is so precious and I know I'm going to be trapped in a hospital for at least a month very soon, the cancer center or hospital is the last place that I want to spend my time. I want to be out in my new (used) kayak or sitting in a beach chair by the river with Craig and Sammy. Even for the quick CBC finger prick appointments you still have to drive in, drive out, register, wait, see the nurse, see the doctor, wait, wait, wait ... . It gets old.

It's also hard to keep or make any plans with anyone as every day something new seems to crop up and I can never count on anything taking the anticipated amount of time. Plus, with my white count so low I again have to be very cautious about crowds, sick people, what I eat, etc. This also gets very old. I haven't been able to go to the yoga studio all week; we couldn't see a friend in New York because her baby had just received live vaccines and I could easily catch the viruses; I couldn't sit in on the Stupid Cancer radio show broadcast as planned; I missed a planned breakfast at my favorite place with a friend this morning; I missed a get together with friends last night and will miss a birthday party tonight. Being a cancer patient truly does command my schedule right now, but I do my best to make the most of the free time that I do have and try to remember the fact that all these appointments, port pokes, blood draws, quarantine and the incessant waiting are all just part of the process that is saving my life.

It is a full-time job and the most important position I have ever held. It seems it's time for a promotion?

Tuesday, July 27, 2010

Setting Intention

In one of those cosmos aligning, kismet life occurrences, I've found a place that was seemingly built just for me in this time in my life. Just a few weeks ago Enlightened Way Wellness Center opened in the Tariffville Mill, a 3-minute walk from my house. They offer yoga, free meditation classes, massage and body treatments, an herbal tea bar, lifestyle programs and more. But most importantly the couple that runs it are two of the most kind, generous and inspiring people I've ever met. I've had the pleasure of spending time learning from them and plan to do more.

It's been especially great as the center is so new that morning classes are sparsely attended ... I've had a one-on-one yoga class and a private meditation session with both owners. They've offered me suggestions, tactics, visualizations, breathing techniques and a calming focus to lean on as I prepare for the daunting treatment ahead of me and deal with the physical and mental effects of the treatment I am currently in.

After a strengthening yoga class the owner, Mark, pulled me aside and said he had been thinking about me and had some thoughts that he wanted to share if I was open to that. Oh, am I ever. I'm looking for everything I can find to help get my mind, body and spirit in the right place to survive this. We went into the comfy and calming meditation room and discussed:

When we are born we are perfect. We are a perfect manifestation of 100 trillion cells each working in synchronized harmony like a choreographed dance. It's when we hit the world and outside influences come into play that the cells lose their place and get out of step. Enter cancer. Thinking of it this way helps me to realize that it's an organic process. It is nothing of my fault or anyone else's fault that this happened to me. Something just set these certain cells off course and into mutation and now it's just a matter of them finding their way back to that pure and perfect state where everything is once again in harmony.

Rather than visualizing chemo eating away at the cancer cells like a game of Pac Man, I'm working on visualizing my treatment as creating a healing light inside of me that fills me with the power to repair those broken cells. I'm visualizing the cancer cells inside me not as an enemy trying to kill me, but instead as my children that have lost their way. They just need some help in getting back to their pure state. If you have a kid that's seemingly out of control, you still love that child unconditionally, right? By listening to what they're asking for (rest, the right nourishment, peace), with intention, I have the power to get things back in order. By setting the right intentions, I can help those cells rejuvinate and remorph into healthy cells, just like they morphed into unhealthy ones. That may require some tough love, but love nonetheless.

I believe strongly that those who survive and can stay sane during something like this are those that can embrace the negative things that happen to them and learn to work with them, not against them. This fits my personality much better than the idea of killing and anger.

What we give attention to grows. If I focus my attention on being angry or being as "pissed off" as the cancer is, then that anger is only going to grow to other parts of my life. From the beginning I've never been angry or resentful for more than fleeting moments as I know it's energy wasted – and most days I don't exactly have energy to spare. Rather than hating and cursing them, if I look at those cancer cells as part of me and love them then that love will grow. Attention is what I am focused on right now. Intention is what I am setting for my future. A future of health and harmony.

By no means does this mean I'm giving up the battle. I talk often about the Rocky mentality and having that story as my inspiration. What strikes me so much about it is it's about going the distance; getting back up when you don't think you can. It's not necessarily about being stronger or more blood thirsty than the enemy, but instead about knowing how to fight smarter. In fact, Rocky doesn't even win the fight in the original movie, but he does go all 15 rounds with Apollo Creed – a big deal. That does not happen by accident ... it all goes back to his training, to harnessing fear, to digging deep and finding that place, to rolling with the punches.

Mark pointed out that in ancient martial arts when one opponent is being attacked by another, instead of tightening up and puffing out his chest like burly guys in bars after a few beers, he leans back to absorb the hit and lets that force ricochet off him and into space. It's a similar concept to Parkour or Freerunning, the physical discipline of training to overcome any obstacle within one's path by adapting one's movements to the environment. This allows those that practice Parkour to be able to land seemingly inhumane leaps and bounds without shattering every bone in their bodies. In short, I can't control what's happened to me and the physical challenges that it brings, but I can control my attitude toward it and how I absorb it into my life.

For me it's vitally important to be an active participant in my care, complementing the powerful medicines and scienctific advances that I'm subject to. It's easy to sit back and say "everyone is going to get cancer anyway so why should I care how I treat my body?" This is a detrimental way of thinking. Life is about building a foundation so that if and when we do face deep stress, loss, or illness, we've built the foundation we need to be able to handle it, that we've learned not to puff our chests and attack it but to absorb it, listen to what it's trying to tell us and use those answers to carry us forward. If our bodies and minds are not strong during "regular life," what is going to happen when that life is turned upside down? I am forever grateful that I was in the mental and physical place that I was when I was first whopped with this diagnosis and that I've been able to maintain that with each diagnosis since.

Sure there are days when I turn into a crazy person for a little while. No matter how much yoga and visualizations I do there are days when I cry and scream and become resentful and frustrated. But that's an important part of the process too. Without going off balance I wouldn't appreciate the stability. There's no better feeling than getting to that low point, reeling myself out of it, then being able to look back, take a deep breath and learn from it.

Monday, July 26, 2010

Be The Match

Please consider registering as a stem cell/bone marrow donor and becoming the match that could save someone's life. A wonderful, motivated, driven family friend is organizing a stem cell/bone marrow donor drive in my honor on August 21, from 11 a.m. to 3 p.m. at the Harwinton Volunteer Firehouse, 158 Burlington Road in Harwinton, CT. All you have to do is show up and a volunteer will swab your cheek and enter you into the national donor registry. Please help to spread the word. If you can't make the donor drive, it's also quick and easy to register and order a kit online.

I am fortunate enough to have a sibling that matches my HLA type and pending successful further tests, she will be my stem cell donor. However, many do not have that luxury. It is so important to expand this registry of volunteers and increase the odds for those who seek a donor. Help others with blood cancers and blood disorders to live the long, happy lives they deserve with this one simple step on your part. More info on the process and what is required of donors called to act at

Wednesday, July 21, 2010

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.

Tuesday, July 20, 2010

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.

Wednesday, July 14, 2010


As soon as we stepped off the ship onto the shores of San Juan, Puerto Rico, it began to mist, then drizzle, then full-out tropical rain. The air was warm and present, like being wrapped in a pilly sweater worn thin. It engulfed us as the rain moistened our skin, its mist opening our pores.

We have no umbrellas and no plan. We watch the other tourists pouring off the cruise ships docked at port as they swarm in all directions grasping for maps, asking for directions, climbing onto bus tours and heading out for shopping excursions.

Intrigued by the sun-faded sign in the window of a Puerto Rican general store/bar that read: "Silver Key Light 89 cents," we escape from the rain and duck under the overhang. Though the claims of "iceberg cold," "smooth, refreshing" on the can were by no means true, we reminisced about the watery brews we'd fein for in college and watched some of the World Cup through the grainy window from our covered patio perch.

The rain settled into a fine mist ... one that women might pay for in a spa ... so we tossed our cans and made our way into the cobble stone streets of Old San Juan. The Spanish Colonial architecture was breathtaking. Each building has its own distinct character yet they all fit together into one seeming piece of art. Colors are bold and bright from intriguing corals and tangerine oranges to faded terra cotta and Miami blues. The lines of the storefronts and restaurants are crisp and striking against the undulating natural landscape. The streets are narrow and packed with cars. No one was moving; just sitting in traffic on one steep road after another.

A friend had told us that we could not go to San Juan without sampling a mojito so this was a must do. Wanting to pick the brains of some locals about where to go and what to do with just six hours in Old San Juan, we turned into a Reggae bar called the "Blessed Cafe." The smell of Jamaican beef patties wafted from the back of the narrow, bare bones bar. Overhead fans whirred above and a TV played a Bob Marley concert bringing the framed pictures of him that hung on nearly every wall into motion. There was only one other couple in the place so we pulled up a seat at the bar and befriended the bartender – a college student from the states there on a study abroad program that she extended ... and extended again.

We watched as she crushed the fresh mint, chopped and squeezed the lime and added sugar, a long pour of Puerto Rican rum and just a splash of seltzer to the mix. It tasted like the palpable freshness of an Irish Spring commercial. Perfection.

My legs started to go a little tingly and my face flushed happily and woozily as we paid our tab and the effects set in. It was time for exploring on a buzz. The window fronts were endless, just one after the other of cheezy souvenier shops, local artisan craft shops, art galleries, trendy and high-end clothing stores. Across from a Starbucks one shop caught my eye and I beckoned Craig in.

Everywhere I looked were words. A word lover's dream. Huge painted tiles, posters, displays of poetry. Each poem accompanied by a simple painted design. I was taken aback by all the colors and all of those letters, words, sentences. Then I narrowed in on one.

The poem was titled "Little by Little" and was illustrated with a simple rendering of a red flower:
I'm letting go. Little by little, but I am.
It sometimes hurts. I sometimes cry.
I sometimes erase it all
And sometimes I try and I can't.
But I'm letting go. I am.
That's just the way I am.
I can't help it anymore.

My mind races.
Unlike the hare
Who had patience to compete.
I'm racing to defeat myself.
It's torture in a shell
My heart has been to hell
I'm letting go.
Little by little, but I am.
I learned that now I can.

Sometimes it's good.
Sometimes it's sweet.
There are times too
That I never meet a standard,
Where questions flow unanswered
And it's okay in itself.
I'm taking down the shelf of expectations
Crowded by imitations
I learned that now I can.

I'm letting go. Little by little.
But I am.

I froze in front of it and read the words again. My eyes welled and my chest tightened. It was speaking directly to me. I could not believe how much these words were physically affecting me. It so eloquently put into words everything that I was feeling at that very moment ... that I needed to let go of my expectations and to learn that it is okay to take things step by step and that I will stumble.

"Craig, I need to have this," I called over to him from across the store. "Read this," I said, shoving a small 5" x 7" painted placard of "Little by Little" in his face.

"That's nice ... but what are you going to do with it?" he replies after absentmindedly scanning it over.

"No, you don't get it," I said. 'Men,' I thought in my head. "I need to have this to look at every day. I don't know why it's affecting me so much, but it is. Just give me the wallet."

Knowing I was serious and obviously very emotional, like the wise man he is, he handed over the dough.

I brought it up to the counter still shaky. Out jumped a teeny tiny chihuahua, trembling more than I was and I scratched behind its ears. I asked the woman at the register if she had any information about the poet. She gave me a worn copy of the poet's latest collection and told me that the place I was standing in was called The Poet's Passage – a haven and inspiration for writers with weekly open mic nights. I loved everything about it.

I placed the brown bag with my "Little by Little" poem placard and poetry book into the backpack Craig was carrying and felt so excited to post it in my office when I would start work the next week as a constant reminder that I will get to wherever I need to be.

We moseyed some more then when several blocks away I was drawn to another store. But its metal gates were pulled closed. I pointed the shop out to Craig and we crossed the street intrigued by the beautiful paintings of the buildings of San Juan hung on the walls.

"Karin, it's the poem," Craig called me over as he pointed out that in the storefront window was a huge rendition of "Little by Little."

At that moment a woman opened the door of the shop.

"You can come on in if you want ... we're just hanging out," she said to us, as if she'd known us forever. She unlocked the gate and beckoned us in.

"You were at the Poet's Passage earlier today weren't you?" she asked me.

"Uh, ya." I half-replied, taken aback by her almond skin and her fascinating Medusa-like hair. Tight, tight dreaded curls of golden blond that resembled springs you couldn't help but desire to reach out and touch. I was so confused by her comment and just took to poking around the artwork and poetry in the store as I eavesdropped on her conversation with a young man behind the counter. She talked about a recent trip she'd made to Paris to check out the poetry scene there, and she was encouraging him to continue writing. As they spoke I spotted the same poetry book that the cashier had given me and fingered through it. I then noticed the artwork on its cover – a simple pen illustration of a woman's face – tight, tight tendrils of hair tumbling over her forehead. I looked up again at the storeowner and it all came together.

I elbowed and whispered this to Craig who nodded to me to go up to her. I stood quietly until she finished her conversation with her young apprentice and said:

"You're the poet aren't you? I just have to tell you how much your poem 'Little by Little' affected me." I proceeded to tell her how it brought me to tears.

To my surprise, after a humble acceptance of my compliments, she replied with:

"I wanted to meet you. I saw you in the Poet's Passage from afar and you had such an amazing energy about you. But by the time I could get away, you were gone. I was so excited to see you here. This is the store that I run with my husband." She is also the mastermind behind the Poet's Passage.

This woman, whom I was so inspired by, had been wanting to meet me. It was one of those moments that takes your breath away. Her name is Lady Lee Andrews, a dedicated poet and lover of words. Her husband is a French painter and together they create fantastic artworks in an amazing space. She runs two stores in San Juan and we happened to stumble into them both. As much as we asked about her, she was just as interested in both me and Craig and in our story.

I poured out to her what I had just gone through and how I was trying to now wrap my brain around the fact that I was on the other side but that the healing would not be immediate and how perfectly she illustrated how we all create these unrealistic expectations for ourselves and need to accept things as they come. That we need to slow our minds down and accept that some questions will never be answered.

When I asked her about the inspiration behind the poem I fully expected to hear it was about getting over a break-up, a lost love. What she told me made the moment even that much more surreal.

When she was painting the large-scale version we saw in the storefront (turns out it is the original), she was recovering from her own cancer scare. Misdiagnosed, she was told that she was going to have to lose her leg in order to save her life. Saved by one doctor who was in tune enough to know that no, it was not cancer, but a treatable infection, she was at once shocked and relieved having already prepared herself for battle, psyched herself up to fight and come to terms with what she needed to do. This poem was about being able to let all that go.

We shared more conversation about writing and the connections that it can make and marveled at ours. She opened up her city to us, drawing out a map of the walk that we should take to soak in the sunset and sample the best Puerto Rican food where the locals eat when they don't feel like cooking. She gave me a fresh signed copy of her book, "Naturally" and I gave her my blog address.

I've noticed Puerto Rico pop up on my site map and I've noticed myself reading the lines of "Little by Little" off my fridge where it now lives every day. Maybe I'm not back in my office on the mend, but I will still get to my place of peace. I'm still racing to defeat myself ... torture in a shell.

Tuesday, July 13, 2010

Just Another Surgery

It's crazy to think how commonplace anesthesia, breathing tubes, cold, cold, cold operating tables, steri strips and hospital provided no-skid socks can become. This was my third biopsy in just a little over a year, not to mention the two bone marrow biopsies and egg retrieval surgery.

However, this time I got a blue-and-white seer sucker robe to tie over my johnny. I kind of wanted to take it home. Other than that, it was same old. Just another slice-me-open-and-take-out-a-chunk-of-lymph-nodes kind of day.

I was the surgeon's first case of the day so my mom and I arrived at 6:15 a.m. after a 4:30 a.m. wake-up. We were bright and cheery to say the least. I'm glad she was the one driving on the highway.

I was brought to the pre-op room where an IV was placed in my forearm and I had a visit from the anesthesia team where they explained the usual process of sending me to Tahiti, that I would be breathing on my own but would have a tube in my throat to breathe in the gas that would transport me.

Before long I was rolled into the cold OR where the operating team all introduced themselves and we made small talk about the construction at the hospital. My funny little surgeon was cracking jokes and full of smiles. He indicated that he would reopen the "wound" he left there in May, 2009 as my new cancerous lymph node was right underneath it. They were all so nice and we repeated together several times what procedure I was having done before the surgeon wrote it in marker on my left shoulder ensuring he was going into my left underarm.

The last thing I remember is breathing gas out of a big tube covering my entire mouth ... the anesthesiologist telling me to mouth breathe.

"Have a nice, deep sleep. We'll see you soon," said the nurse.

I thought of snorkeling less than 10 days before when I was also breathing in and out through my mouth and pictured myself surrounded by cobalt blue and neon yellow fish rather than wrinkled blue scrubs and blindingly bright round surgical spotlights.

With just a few breaths I was out and remember nothing until waking up in the same room that I had started pre-op in, which was now converted to the recovery area for all of us morning surgical cases. Soon my mom was brought in and I felt totally at ease. My underarm was in some pain so they gave me some IV pain meds and after cranberry juice and graham crackers, a Percocet.

After maybe an hour I felt fine and was released. A pimply faced, teenaged, super shy volunteer
wheeled me out to the car via the fastest wheel chair ride I have ever gotten. I swear we were squealing around the corners. He took his patient transport assignment seriously. It was rather exciting.

Other than being loopy from the Percocet and orange from the sterilizing iodine, I really felt fine. My mom cooked me up some eggs and cheese when we got home and I cuddled into the couch where I camped out for most of the rest of the afternoon. Craig came home from work and joined me in napdom. He then cooked me a delicious burrito and we ran out to rent a movie. After an inspiring viewing of Invictus it was more sleep.

I didn't take any pain meds after getting home and have been able to squelch the ache with Extra Strength Tylenol alone, which makes me very happy. Today I was just sore in the armpit and my throat but had a lot of energy ... enough for a 40-minute walk which felt fantastic. I had good music pumping and a lot of aggression so the adrenalin just kept pushing me. I also finished a book and baked kale chips and zucchini bread. This was quite satisfying. Luckily, I was able to remove the surgical dressing and shower this afternoon as sweating in these 90 degree temps revealed smells I didn't know I could produce.

Dr. Dailey started me on Prednisone steroids which has helped to calm the Hodgkin symptoms and I'll stay on these until I start chemo on Thursday. It's eliminated my fevers and has much reduced the aches from my swollen lymph nodes and the swelling in my chest.

I have not yet heard the biopsy results and have no idea what we'll be getting into on Thursday, but I know that I'm going in to start chemo of some sort as they want to get me going on something as soon as possible to zap this cancer.

Tomorrow entails an echocardiogram to ensure that my heart is strong enough for more chemo. But more importantly, I'll be meeting Craig for a picnic of our favorite Chipotle burritos and a walk around our old West Hartford stomping grounds. Hoping for another one of these beautiful summer days we've been spoiled with.

Sunday, July 11, 2010

What Do You Want From Me?

I had nothing but a big bowl of anxiety the morning I was to go in for all the tests. I wasn't allowed any food because of the scan, but I don't think I would have been able to eat anyway. The drill was routine enough: injected with the dye and left to drink the milky, chalky barium sulfate in a dark room for an hour with no stimulation allowed. Once in the PET Scan machine I fell asleep to its whir under the color changing lights installed in the ceiling that remind me of the back of a limo. Blood work followed then it was upstairs for a breathing treatment and to see my oncologist.

He and his nurse spotted Craig and me in the waiting area and called us right back to the exam room. He joked about how we blew him off for a vacation (I was supposed to have my scan July 1, five days earlier) and then said he had heard from Dr. Dailey that I hadn't been feeling well.

I told him that no, I hadn't been, and the conversation continued into the exam room. As we spoke, his nurse Erin pulled my PET Scan pictures up. We were all seeing it for the first time.

"Well, it looks like it's back," said Dr. Cooper. Craig witnessed Erin do a double take and a little jump, so taken aback by what she was seeing.

Dr. Cooper palpated the lymph nodes I had been concerned about and they were in fact the exact places lighting up on the scan. The four of us then huddled around the flat computer screen marveling at my 3-D body head to toe marred by these black globules filling my chest, my left underarm, my neck and collarbone area. Some starting in my abdomen and pelvic bone.

"How is that possible?" I asked, deadpan. At this point we were looking at the PET Scan I had after ICE which was completely clear save for one questionable area in my chest lined up next to this one with so much activity.

Noticing that I was a little woozy, Dr. Cooper invited me to sit down as we talked further.

"I'm positive it's malignant," he said. He explained that it's most likely the Hodgkins back again, but that there is a chance it morphed into Non-Hodgkins or another type of lymphoma. He explained that it's "highly unusual" to see a relapse this fast especially after the highly aggressive treatment that I just came out of. "Whatever this is, it's pissed off," said Cooper.

From this point on I only heard words. No coherent sentences, just words. All I could think about was how small his pupils were as I stared at them through his rimless glasses. He went on about treatment options, why I may have relapsed, allogeneic stem cell transplants, stem cell donors, DNA testing, smart missiles, Ebstein Barr Virus, b-cell lymphoma ... . It was Charlie Brown's parents on the other line of the phone again: "Wah, Wah Waaaaah, Wah, Waaaaaah."

Craig diligently took notes and paid full attention so I was able to let myself go even further. I stared at Dr. Cooper's khaki's and his blue office shirt and wondered why he never wears a white coat. Then I pictured his closet full of boat shoes and khakis and only light blue colored shirts - striped, checked, plain. It's all I've ever seen him in. Kind of like a cartoon character.

I'd float in and out of the conversation. My tears would well in my eyes and then subside. The lump in my throat continually jumped. I was not surprised at the news, though I was deeply, deeply disappointed with it. I know my body very well and I knew that the cancer was back as much as I tried to will it and visualize it otherwise. That is why I pushed to go away on vacation together so last minute. I knew deep down that this scan would reveal a whole new adventure to come, but this knowledge did not make receiving the news one iota easier.

They decided to bring in the pathology team right then and there to try and get some tissue samples from my external lymph nodes through a fine needle biopsy. This would help us to better know what we were working with and be able to better formulate a plan.

A doctor, resident and intern come in and I mustered all my strength to not burst out crying. I had hot tears rolling down my cheeks for the few moments that Craig and I were alone in that dreaded room. He looked ashen and his eyes instantly grew dark bags below them.

With no numbing medication whatsoever, the doctor came at me with a "fine needle" which he jabbed into the lymph node on my collar bone and then moved up-and-down, up-and-down, sucking up tissue into a syringe gun. It felt like it sounds. I just stared at the wall and gripped the soggy tissue in my hand.

They'd leave the room to go look at the sample under a microscope then come back and say: "no diagnostic material to work with." This happened twice in my neck. Then they went for the node in my underarm – again, twice to no avail and they decided to stop and instead schedule a surgical biopsy. More slicing and dicing.

After my breathing treatment and more blood work which kept us there until nearly 5:30pm, we were finally released. As soon as I got to the parking garage I lost it and cried and cried as we sped along the highway. I felt so angry and so sad all at once. I kept kicking and smashing an empty Poland Spring bottle at my feet and choking and yelling.

I felt so awful and so faint that all I wanted was McDonald's ... something I haven't eaten since I felt so awful after my bone marrow biopsy last year. Craig pulled off the highway and I indulged in French fries, two "cheeseburgers," and a mocha Frappe. The grease and immediacy of it made me feel better. Though my stomach didn't feel so hot that night.

I called my parents who came to our house and the four of us sat in the sweltering heat of our living room under the ceiling fan as we recounted what happened. We were all crying on and off and all glowed from sweat and anger. We asked a lot of unanswerable questions and tried to wrap our brains about what was coming next.

Here is what I currently understand:
The very likely path we are embarking on is toward an allogeneic stem cell transplant. This means that I will this time get the stem cells of a donor to create an entirely new immune system since my own stem cells still couldn't combat this disease. The ideal donor will be my brother or sister. Both are being tested to see if their DNA is a close enough match. If not, then the national bone marrow/stem cell donor registry will be searched, which contains over 7 million people. The hope is that one can give me the stem cells that will save me. The allogeneic transplant is much more risky than the autologous transplants I have already gone through because there is the life threatening risk of graft vs. host disease and that this new immune system could recognize my own body as foreign and eat me alive. I'll be in the hospital for at least a month with major precautions and will be watched very closely during the most crucial first 100 days.

Prior to that whole process, I need to get into remission and we need to stop the spread of the cancer now inside me. To get there, I will have the lymph node in my left underarm biopsied tomorrow by the same surgeon who biopsied that same area in May 2009.

We'll get results on Wednesday, and I am on the schedule to start chemo on Thursday. I don't know what kind of chemo or what the regimen schedule will be yet ... that will depend on the biopsy results but a couple different cocktails have been tossed around, each which include drugs that I, and more importantly, this Hodgkins has not seen before.

We're consulting with oncologists at Sloan Kettering in NYC and Dana Farber in Boston, in addition to the expertise and collaboration of Hartford and Yale with the hope of getting a good, solid consensus and making sure that I'm on the absolute best track to get rid of this thing forever. I am no longer an easy Hodgkin's case. I am now an anomaly defying all the odds–something I did not and do not want to be. I have had Adam Lambert's "What Do You Want From Me?" stuck in my head for days just not understanding why this is happening to me.

However, there are still options and my doctors and I are hopeful that there is still a good chance for long-term remission. I am scared as hell, but equally as determined to ensure that that happens. I will endure whatever I have to to keep on living. There's no way that this aggressive cancer can be any more pissed off and determined than I am.

Tuesday, July 6, 2010

Pissed Off

It is not a chest infection. The cancer is somehow back with a vengeance, despite all the high-dose chemotherapy and 2 transplants. I am very mad. But even more so I am very, very sad.

As Dr. Cooper described it, the cancer that has decided to nest inside me is very "pissed off." He's only once in his 25 years seen it come back so aggressively and so quickly after such a high-dose regimen.

I do not understand what it wants from me.

I will write more when I can have the capacity to accept this as reality.

Monday, July 5, 2010

Sun Kissed

The Caribbean sun, sand, and salt did both Craig and me much good. It was so cleansing to be able to walk away from it all even for just eight days. To leave the piles of medical bills, the long to-do lists, the bags still not unpacked from the various hospital stays. A change of scenery where we were forced to do nothing but enjoy ourselves was wildly healing.

The islands, their white sands and unreal turquoise waters were nothing less than breathtaking. As we were sailing from St. Thomas to St. John on a catamaran with raggae pumping and rum runners being poured from a cold jug all I could think was "This is how I want to go." Not in a hospital bed but out in the beauty of nature doing something that makes me feel so alive it hurts. It's experiences like that that make me realize what an incredible world we live in and fuel my urge to continue to travel to see more and more and more of it.

The sun helped my eyebrows grow to the point of near normalcy and my eyelashes are creeping out as well – still very short, but they look like they'll be very full. And, there is a distinct soft fuzz sprouted on my head. Unfortunately, it didn't heal the immense fatigue, but I held me own. In reality, it wasn't too strenuous to lay out in a lounge chair or make it from our room to the theater to take in a show. Every day I got in a solid two-hour nap in our air-conditioned room. So, by the time it got to excursion days, I was well-rested. We snorkeled and sailed in breathtaking St. John, toured the historic streets and took in the stunning architecture of San Juan, and explored uninhabited islands (as well as the very inhabited Jimmy Buffet Margaritaville) of Grand Turk.

Now we're home and in the midst of a major New England heat wave so it's as if we never left the warm embrace of the Caribbean sun. Only here, unlike on the boat, there is no massive fresh fruit and fresh sushi buffets nor 24/7 access to a soft-serve ice cream machine. No live calypso music nor nightly entertainment consisting of everything from jugglers and comedians to dancers and hypnotists. Ah, well. We really did have a blast. The best part was really just being able to enjoy each other without the heavy weight we've been bearing for so long.

I wish I could say that that sense of freedom has remained, but it has not. Before we even left, I was coming down with some kind of something. I was going into coughing fits to the point of gagging and sometimes vomiting with a lot of chest tightness and fullness. Plus, there was – and still is the swollen lymph node issue. Dr. Dailey gave me a z-pack antibiotic to take on the cruise, but unfortunately, it did not help. I just sucked it up and pushed through doing my best to keep the coughing fits to a minimum. Some nights on the ship I'd end up with shaking chills, which I knew meant fever even without a thermometer. But it was only one night (my 28th birthday, actually) that they were so bad that I couldn't make it out to "showtime." I could do nothing but shake under the covers in our room but Craig was more than comforting staying in with me and watching "Monsters vs. Aliens" on TV.

Now that I'm back home without all the beautiful distractions, the symptoms are a little harder to ignore. Dr. Dailey now has me on another type of antibiotic as well as some prescription cough medicine that is working to calm my bronchial tree. The combination also takes away my appetite and causes a lot of nausea. So I've just been taking it easy. Reading and melting into my hammock. Today I have to take it especially easy – no strenuous activity – as tomorrow is the big day: my PET Scan and I can't take any risks with false positives.

Tomorrow Craig and I will drive down to Yale Cancer Center where I'll get blood work, another breathing treatment, PET Scan, then meet with Dr. Cooper to go over the results. I am so freaked out about this test I could rip the skin right off myself in agony. This is a big reason why I wanted to cruise away, less time to dwell on something that I have no control of. The size of the lymph nodes on my collar bone and the one in my left under arm have only increased and have gotten harder and this is concerning. Though the hope is that this chest infection, or whatever is going on, is what is causing that to happen and not that the cancer is back. That would be impossible.

Right now, all I can do is enjoy the shade of this pine tree and the calming buzz of Craig's saw as he works up in his workshop. I just can't wait for tomorrow to be over.