I'm One of the Lucky Ones

Today is one of those days that reminds me why I love New England so much. The air is so crisp and perfect. Though the wind is cool, the sun is so warm. There's a certain delicateness about this time of year when the Earth hovers between two seasons. I took Sammy for a run/walk along the East Coast Greenway, entrances to which we are so lucky to have just a mile drive from home. There were still some snowbank remnants hanging on in spots remiss of sunlight, while those areas where the sun has shone revealed the tips of green popping out of the muddy spring soil. It felt great to sweat beneath my light fleece and to feel the sun burning my cheeks while at the same time, the still cool wind whipped through my thin yoga pants and sent shivers along my hot skin.

We passed acres of greenhouse plants growing under their white domes, soon ready to be revealed. We passed over bridges that carried us across swollen brooks from the melted snow - some areas babbled while others were still frozen in a barely-there layer of ice. We passed decrepit barns and thin, stoic birch trees.

We ran North toward Mass and this section of the trail was very quiet. It gave me the freedom to sing out loud with only the birds to wince at me. A solid mix of Dave Matthews Band, Tom Petty, Jack Johnson and Kings of Leon provided the perfect soundtrack to a perfect afternoon.

My legs and lungs felt strong is ever - stronger than they've felt in a very long time. To the delight of Sammy, who loathes having to keep at leash length on my walking pace, I ran more than I have in a year - alternating with walk periods - for five miles. It felt so good to feel like everything was together again - mind, body, spirit. My cancer treatments make it rare for it all to sync up, usually one piece of me is lagging behind. But today, we were one.

In Lance Armstrong's memoir, he recalls another cancer patient who wrote him a letter when he was first diagnosed. In it he wrote: "You don't know it yet, but we are the lucky ones." It's so true. Though there are the really dark days when I get angry and I get frustrated and I feel like my body is giving up on me, they're balanced by days like today filled with deep happiness and deep appreciation of and respect for life and everything in it.

People often say that this is just a bump in the road and that it'll soon be forgotten when it's all over and I can get back to living my life. But this is my life and though it may not be a life that I ever imagined, it's mine, and I embrace that and I'm living fully in every moment of it. Will I look back on the moments of pain, hurt, and helplessness with longing and fond memories? No, of course not. But everything I am going through right now is shaping me for the rest of my life. I've watched this TED talk by Aimee Mullins several times over and think she nails the essence of dealing with any kind of adversity. As she paraphrases Darwin, "It's not the strongest or the most intelligent of species that survives, it's the one that's able to adapt." Having gone through the diagnosis, the chemo treatments, the side effects, the celebration of remission once before, I've certainly learned to adapt, and that's what's been carrying me through this second round with Hodgkin's. Embrace and adapt to what life hands you or die. To me, it's that black and white. You manifest your own destiny, to quote Garth Stein. There is no time for excuses, only time to make the most of what you're given. And if you want to make something happen, make it happen.

Battling cancer isn't something that I ever want to forget. It's facing the adversity it poses that has taught me so much about myself, about my relationships with others, and has opened so many doors for me. I have a newfound self-love and am in awe at the capabilities of my body, of modern medicine, and most importantly of the human power of empathy and love. Having cancer has brought me closer to so many people, it's taught me new and amazing things about people I've known forever, and it's introduced me to strangers that have stepped into my life at this crucial time that I would not have otherwise had the honor to meet.

I don't pity myself. I don't feel sorry for myself. I feel so lucky that I am able to feel things so deeply - whether it's pain, fear, or love, and that I have become so familiar with this strength inside of me. It's always been there, but now I know just where to look to draw upon it and I have the confidence to know that it will rise to meet any challenge.

Hot Stuff

Well my bad day on Wednesday spiraled even further down. I guess my tears weren't for nought. I really was feeling awful evidenced by the 100.6 temp that registered on my thermometer late that afternoon. I took my temp at 2pm and it was 100 then every half hour after that it kept increasing until I hit the "scary" point of 100.5. When I surpassed that I knew I had to call the Cancer Center, though I dreaded it knowing what they would tell me. As I suspected they told me to immediately head to the Emergency Room. Do not pass GO. Do not collect $200.

I stayed calm and packed a bag of random clothes and random books, magazines and gadgets to keep me busy as I had no idea if I would be admitted and if so, how long I might be kept there. Craig packed me a snack bag and we were on our way, dodging through traffic down 91 at the peak of rush hour.

The on-call oncologist had called ahead to the ER for me so when I arrived it was from triage right to a room - one of only two private rooms in the ER. Being neutropenic was good for something I guess. I was a paranoid wreck knowing how many strange germs are floating around in an ER, nevermind the busiest one in New England. I wouldn't touch anything and was constantly Purelling myself. I was given a mask for anytime I had to leave the room and once they finally put up the neutropenic precautions signs outside my door, nurses began wearing masks before entering my room.

Plain and simple, being in any ER is not a pleasant experience. The "bed" that was put in the room for me was a black mattressed stretcher that felt like a body board. The thin sheet that covered it wasn't long enough and kept sliding down so that my head would touch the exposed plastic. Craig was stuck on the equivalent of a folding chair. All of this would be fine if we were there for just a couple hours, which you would hope would be a normal ER stay. But 6, 8, .... 12 hours. Not so much. The one solace was the flat screen TV on the wall. A gift donated for each of the ER rooms at Hartford Hospital from a man who spent some time there as well. I can't even explain what a difference having that piece of comfort and I am forever grateful for his generosity.

I was seen very quickly by a resident who checked me over with lots of stethoscope listening, symptom questioning and physical examination. As I already knew, besides being feveral, I didn't have any other symptoms. I was only there because I had no immune system and running a temp meant that I was likely on the brink of some kind of infection. I was sent for a chest x-ray then had to pee in a cup - all normal results. Bloodwork was next.

The nurse wanted to stick me in the arm to draw my blood and run an IV so that they could start antibiotics if necessary, but I was persistent that they use my port. I have a port in my chest for a reason. I explained that my veins are full of scar tissue and recounted how many times I had to get stuck last time I had surgery before they could find a viable vein. Well, she didn't know how to access a port and said how long it usually takes to find someone who can. I did not care and told her that she needed to find someone who knew how to do it. Especially if I was going to be admitted, I did not want to have to sleep with a needle in my arm and I didn't want to have to get stuck again when someone could access my port. My relationship with the nurse from that point on was rigid at best. It didn't get any better when she sprayed saline all over me trying to set up the IV fluid pump. She must have been having a bad night.

So we waited. Not too long after, another nurse came in who was an expert in port access and - what are the chances - graduated high school with Craig. They remembered each other immediately. She was one of those girls who was an EMT since forever ago and Craig said that he certainly wasn't surprised to see here working in the ER. That made me feel comfortable and she accessed my port with ease ... though more tape than I've ever seen used. My skin is still red and irritated from it days later. Ah, well. You take what you can get.

At the same time this was happening, another woman came to draw my blood. They both came at me at once as one of the cultures can't be pulled from my port. This means I had to get stuck twice anyway. As I laid there I had this one lab technician on my left pulling tubes full of blood from a needle she stuck in my arm while the other nurse stood over me on my right side and pulled a turkey baster-sized tube of blood from my port. For some reason she held this turkey baster clearly in my line of vision. No matter which way I looked blood was coming out of me and my left arm ached and pulsed from how tightly wound the lab tech had tied the turnicat.

"Oh, my back," the tech groaned as she reached for her chair to hold up her huge, bulging body pulling my blood-filled tubing taunt.

"Ohhhh, my back is killing, phew" she moaned again. I was so disgusted with her lack of tact that if my arms weren't occupied I may have punched her in the face.

Craig noted my anxiety and deep, loud breaths and stood at my feet and squeezed them. These are the situations where inner strength kicks in. And these are the situations that I think back on later and realize if I got through that I can get through anything. I don't know how I didn't pass out. Finally, the vampires left with their viles.

More hours passed. Another doctor came in and told me that he spoke to the oncologist on-call and that the plan was to hold off on the IV antibiotics until it was decided whether I will be admitted. This would be decided by the results of my lab work. They would look at my granulocytes, a type of white blood cell. Because my overall WBC count was so low, the phlebologists would have to do a manual smear, meaning they would have to count the cells by eye as no machine would be able to detect them. If my count was more than 500 I could go home and follow up with Dr. Dailey in the morning. If they were under, I would be admitted.

So, we waited some more ... got to watch The Office baby episode and roll right into late-night TV. Somehow Craig was able to fall asleep in his rigid chair with his head sharing half the pillow from under my head. It was close to midnight when they came back with the verdict: a count of 143 granulocytes - not even close. Damn it. Knowing that he wouldn't have to take me home Craig left so at least one of us could get a good night's sleep.

So it was me alone in my little ER room until my new nurse, Jim, came in and things were a million times better. He was so nice, so attentive and so friendly. I immediately lit up and knew that the rest of the night would be so much improved. He hooked me up with the super strong IV antibiotics that would flow through my port throughout the night. He brought me three styrofoam cups of water and finally the Tylenol that I had been aching for for my pounding headache. We talked about his daughter, West Hartford, snowboarding and he kept checking in on me throughout the night, yes, the night. It wasn't until 6:30 a.m. that a bed opened up on the oncology unit and Jim himself brought me up there. I think he was just as excited for me as I was to be out of there and away from the germs and noise.

Trying to sleep in the ER was an impossible feat as every few minutes you hear calls over the loud speaker like "active trauma five minutes out", "environmental needed in red pod for mop up," "active stroke rolling in," "EKG needed stat" ... etc. People are at the brink of death and the ER staff is frantically busy saving their lives. It's not a place for a cancer patient with a high fever. I can't imagine how those doctors and nurses do what they do. I found out later that the ER was so packed that night that there were 47 people on stretchers waiting for beds - every inch of the place was taken up. It's no wonder with so many people using the ER as their place of primary care, especially in a city as poor as Hartford. And they say we don't need health care reform? I digress ... .

The welcoming wagon was there when I was brought up to the fifth floor. The nurses and PCAs recognized me right away and many said they weren't surprised to see me back there knowing what high doses of chemo I received. I was put in the same room I was in during my stay the week before and there was a lot of comfort in that. I asked for a breakfast tray which came right away and after they took my vitals I reclined my bed flat and fell right asleep.

Dr. Dailey came by to check on me and he decided it best to keep me one more night to receive some more strong antibiotics to kick whatever might be brewing. So my mom came to spend some time, we played Scrabble Slam then I slept through most of her visit (at her insistence). A co-worker came with a smile and some great magazines. Craig came that evening and we hung out, took some masked walks around the floor, Skyped with my brother and sister-in-law, and he stayed until I fell asleep for the night (at my insistence). Though much deeper than in the ER, a full sleep is still hard to come by in a hospital. I had to be woken every few hours for a vitals check and because my blood pressure was very low they kept increasing my fluid drip meaning nature calls were another cause of frequent wake ups.

All-in-all I felt much better on Saturday morning and I was so, so eager to be released home, but I knew that it was all conditional on my white blood cell levels. I showered wearing my socks because I forgot flip-flops - hell no was a stepping in the communal shower barefooted - I know a thin layer of cotton probably didn't offer any protection, but it was a mental thing. I wolfed down my breakfast - quite delicious cinnamon French toast, and kept my ear to the nursing station for Dr. Dailey's arrival. Finally it came and he asked:

"So, are you excited to go home?"

"Yes ..... ," I replied with a goofy smile.

"Well, you can. Your counts are up to 7.5," he said. This is normal range meaning no more neutropenia, no more masks. My heart lifted.

Since my release it's been sunny and nearly 50 degrees every day and I've been relishing every minute of it - seeing friends, hiking, working out outside, running, reading on my lounge chair in the sun. Fantastic.

I really feel great. Such a huge turnaround from last Wednesday it's unbelievable to me. Besides the rash of red raised dots I've developed all over my hands, arms, and legs as a reaction either to one of the drugs or to my WBCs increasing so quickly, and the bloody tissue I keep blowing out, you might actually mistake me for a healthy person. And I'll continue to relish these feelings until I go back in for Round 2 next Monday. I have one week to get myself psyched up for it and that is my sole life mission at the moment.

Vulnerability

My white blood cell count has plummeted, a few days more quickly than anticipated. Yesterday I felt great. A lot of energy. My head was clear. I went to the Avon Cancer Center for a CBC (Complete Blood Count) check - just a quick finger prick for blood and to check in with Dr. Dailey.

The lab tech filled my vile and dropped it into the blood cell tabulating machine and I hear a big groan.

"This things going to give me a heart attack. Ugggghhhhh. Come on."

She's banging the thing, running the sample again, saying she may have to stick me again. She gets on the phone with the Hartford Cancer Center and I hear her on the phone telling them that it's showing a white blood cell number that's impossibly low and that the breakdown of types of white blood cells isn't even showing up.

Turns out it wasn't the machine. The reading was in fact correct. My white blood cells are 0.4. So low that the machine doesn't even to bother to calculate the percentage of granulocyte and neutrophils present. I'm told that I will be at 0 after the stem cell reinfusion. I didn't think I would get this low after infusion one of the ICE chemo.

Dr. Dailey, always calm and assuring, wasn't overly concerned.

"So your counts are very low," he said calmly, balancing out the frantic nature of the lab tech.

He had expected them to drop to about 1.0, but probably not until the weekend. But he said that he was still glad that we hit it hard and I now realize how harsh these drugs really are. I guess that's why the nurses have to wear protective gowns and gloves when handling the IV bags full of the chemo.

As a precaution he put me on a antibiotic in anticipation of any infection that might arise. I now take this Levaquin once a day and I need to take my temperature a few times a day to be sure that I'm not spiking a fever. If I hit 100.5 I need to call him immediately and he'll very likely admit me to the hospital where I can receive IV antibiotics. So far, no fever. This is good because I do not want to be in the hospital any more than I have to be.

I am what is called "Neutropenic" meaning that my body's disease fighters, neutrophils (a type of white blood cell), are nonexistent so I have to be very careful with what I expose myself to. No shaking hands and kissing babies. No getting anywhere close to sick people. I have to be super diligent with food safety and ridiculous about hand washing. So, I haven't left the house since I got back from my appointment yesterday. Well, besides to get outside for some fresh air.

Though Dr. Dailey doesn't think I have to be overly paranoid about it, I thought it best to lay real low - no grocery store, no movies, no restaurants, etc. This is what they told me I'll have to do when I'm living down at Yale so I figure it's best to take those precautions now as well. I do not want to land anything that will delay this treatment course or will send me back to the hospital. I go back tomorrow for another CBC and hopefully the counts will begin to climb, though I'm told I can expect to be this low for several days. Soon, though, the Neulasta shot will kick in and that's when my marrow will start creating new cells to get me ready for the next chemo whop.

For the past several days I've been blowing bloody tissue out my nose. All of the delicate tissue in my sinus tract and within my nasal passages is fried, so it's filling my sinus cavities and I wake up with awful sinus headaches. Once things get moving I fell several tissues of bloody phlegm and internal tissues. It is not a pleasant site, but it feels so much better when the daily collection is out. There can't be much more left so it's got to end soon. My gums are so fragile and raw I can feel every bristle of the tooth brush and I worry that they're not holding tightly enough to my teeth. I also have quite a deep cough that comes up at night. Dr. Dailey says that this is also because of some of the rawness in my bronchial tract. A lot of that tissue is delicate tissue is burnt off so it's irritating my chest.

But I'm not going to play my fiddle. It's all par for the course. I just have to keep telling myself that if it's causing this havoc on the good cells in my body, then it's frying those cancer cells just as hard.

Yesterday I had so much energy I was dancing around to MJ's "This Is It" DVD that my mom had rented for me. Today I am exhausted beyond belief but can't sleep. I woke up a completely different person. My body is so restless and there are so many things that I want to be doing but I can't. I just can't get the physical strength. I've gone through this before and I know I need to listen to my body, but it doesn't necessarily make it any easier, so far doing it for a second time seems harder because I know what's coming.

This afternoon I just sobbed. Choking sobbed out of pure exhaustion. Thank God for Sammy. At my first crying hiccup she was nuzzled on my lap and sat, chest out next to me while I cried it out. She kept giving me her stuffed dog, her new favorite toy. She went and got it off her bed and would toss it over to me for comfort. It's smelly and spitty but exactly what I needed. I buried my face in her fur and wailed and then she was nuzzling my face so much and shoving her toy at me so hard that I just started laughing and laughing and everything was better. I love that dog.

Fried

I'm a cracked egg shivering on a skillet at medium heat.

My whites are cooked and hardened, while my yolk still quivers - an anxious, a restless quiver.

But I can't move no matter how much I wriggle.

The weight of my solidified white is holding me down despite how violently my sunshine yellow center jiggles toward freedom.

My yolk holds tight this nervous energy, this angst to move, to run, to leap - desperately trying.

I need a spatula.

A human-size spatula to scrape me out from under my own edges,

to shimmy under me and turn me over to once again

sizzle.

Coming Out of the Dark

The clouds have begun to part. Literally. Monday the sun peeked through for the first time in nearly a week and with that sun peeked through my strength and even some clarity of mind. After Saturday night's horrific experience things began to look up. I suppose it's all relative, right?

Sunday I was strong enough to get out of the house and instead spend the afternoon on my parent's living room recliner watching Dante's Peak and USA vs. Canada. I got to see my little bro, which is nice and he even accompanied me on my short walk around the neighborhood. I still felt nauseous and weak but nothing compared to the days prior.

Monday, I drove myself to the Hartford Cancer Center for an appointment. It was a balmy 45 degrees and I had the car sunroof open blaring a Judy Garland Broadway compilation CD a friend had dropped off for me. I felt great in big part due to the fact that I had a good, solid bowel movement. I thought that the moment was deserving of trumpets and fireworks. Though they didn't come, they did play in my head. I felt a million times better. And after the puke, when I suddenly came out of that nausea cloud, it felt as if I'd found my legs again after months at sea. For four days straight it felt as if I had just stepped off the ride at the amusement park that spins so fast it makes you stick to the wall and the floor drops out from underneath you. I always hated that ride. It felt like my stomach was not in my abdomen, but instead in my throat, and that what was in my abdomen was churning through my intestines in a radioactive manner. No. Sudden. Movements.

I even wore jeans and a cute top to Monday's appointment. I showered and put on mascara. These were big steps. I certainly wasn't feeling 100%, but I'd say 65%. Today, we're up another 10 or so percentage points. I joked and laughed with the ladies in the lab. We talked about Justin Timberlake and his Soupville SNL skit. Denise, my favorite, was there to take my blood and she was so concerned about what I was going through. She gets all teary-eyed and always tells me that she loves me. I found out that she's no longer out at the Avon Cancer Center where I'll now be having most of my appointments since it's much closer for me. This was sad news, but I know we'll pass each other.

I met with Dr. Dailey and told him about my weekend escapades with the constipation, the nausea, the vomiting. He was sympathetic and we talked about some new options that we can try for ICE round 2 that might help things, including more steroid and a medical marijuana-like nausea blocker (oooooooh) that he says works well with a lot of young people. Despite my weekend symptoms, he thought that I was doing very well with everything, considering. This was encouraging. My blood levels were still holding okay. I'm a bit anemic but he wasn't too concerned. He wants to continue to check my blood every other day. He expects the big drop to happen this weekend and for my white blood cells to stay low (nearly non-existent) for at least a week when the marrow stimulating effects of the Neulasta shot wear off and the chemo effects really kick in. From this weekend forward I'll have to really confine myself to home and controlled environments. No movies. No restaurants. No big crowds. Definitely no contact with anyone who is remotely sick. If I catch a bug of any sort not only could it delay my treatment schedule but my body might not be able to fight it off. I am not going to let that happen so I plan on heeding his warnings to the extreme.

Then it was time for the Lupron shot. This shot will serve to shut down my ovarian functions in hopes to protect them during the high-dose chemotherapy and to eliminate monthly bleeding as my platelets will be low and there is a risk of hemorrhaging. I'm told that it will also give me menopausal symptoms like crazy mood swings and hot flashes. Depending on how my body reacts I might go on a low-dose estrogen to counteract things. Basically, I'm just a human beaker bottle. A little of this potion. A little of that toxin. Let's get me to gurgle just enough, but not bubble over ... . And let's see what different colors I can turn while we're at it.

My oncology nurse whom I had all during the ABVD, Diane, opened the door with a box in her hand. She had a look on her face like she was a little kid who just spilt a whole gallon of milk on the floor.

"I have a really big shot for you," she said, scrunching up her nose and lips. "I'm sorry."

Oh, dear.

"That's okay," I said back. "I just won't look at it."

"Oh! You're so good! Can I just take you home with me?" she exclaimed and came over and gave me a big hug. "You're just so good. I don't know how you guys do it," she said.

I realized that she felt so awful thinking that the shot she had to give me would add to the pain I was already going through, but to me, it was just part of the process. If it was going to protect me or make me better, just stab me with it. I can take it. It also made me realize that other patients might not react that way. I wonder if others would fight back at her begging her not to come at them with the needle, refusing their treatment. I'm sure it happens. This is why oncology nurses should be considered on par with angels.

I didn't look at the needle, but I believed her that it was big when it seemed like it took forever for the drug to go in. I had to pull out a cheek and she shot me in the upper behind. It really wasn't a big deal at all. Diane is very, very good at giving shots. It just went deep and there is still a dull ache in the injection area today. I zipped back up and was on my way with a slew of follow-up appointments over the next few weeks until my next ICE infusion - March 15.

Until then I'll continue my walking. I have not missed a day yet no matter how shitty I've felt. Sometimes the walks are longer than others. Sometimes they're slower than others. But it's important to me to move every day. I also get outside every day which is getting easier now that it's finally not precipitating. Fresh air does wonders. I have so much paperwork to focus on and administrative work to be done that I am not working, I still get a sense of accomplishment completing all of those tasks. I'm eating pretty well. I can keep most everything down now and my appetite is strong. I'm instructed to be on a "high-calorie, high-protein" diet. This is much different than my usual low-fat, lean-protein regimine. Basically right now I am just eating as much as I can when I am feeling up to it as I know how much my body needs the fuel for this fire inside me. I'm still focused on raw, non-processed foods, though I make the exception for peanut m & m's.

I hope that these improvements continue and that I'm out of the dark when it comes to the nausea. The achiness and weakness that is expected to set in in next week is something that I can deal with - napping is easy. Trying not to vomit is not.