Tuesday, March 30, 2010

Stem Cell Collection














I am proud to say that along with my cancer co-pilots Craig, Mom and Dad, I made it through the first Smilow Cancer Hospital adventure. We found the right parking garage, navigated the elevators, the infusion check-in area, the lobby, the surgical floor of the main hospital and most importantly, I found where they sell Starbucks coffee. Over the past three days we got quite a tour of the place and became very familiar with it after a run of long days there. The great part is that we didn't have to navigate it alone. I have my own personal nurse/tour guide/organizer/personal assistant/appointment booker/patient advocate named Kathryn. I know already that she will be a God send throughout this process. She is Smilow's Autologous Stem Cell Transplant coordinator and wow, does she have it together. She whisked us around, explained everything and kept me on tract.

I have to say that the facility is beautiful. The main lobby boasts comfy black leather furniture, a water wall, beautiful contemporary artwork and even a piano that plays itself (and I understand they also feature guest pianists). Everything is open, airy and bright.

The medical oncology area is broken up into different pods. Each pod has four patient areas within it that are separated by half-walls with fogged glass and curtains that you can pull closed to separate yourself from the patient across from you if you choose. The rooms have huge windows so – I imagine anyway – that there is lots of natural light when it's not as gray and rainy as it had been during my time there, though it was calming to watch the rain drops stream down the windows. Each patient area has it's own moveable flat-screen TV, chairs for visitors and a recliner that even has a heating option to keep patient's buns warm, plus an overhead radiant heat option. The room's color pallete is pale yellows and spring greens and the floors are wood laminate so overall, you don't feel like you're at a hospital. And, they even offer you warm terry cloth blankets that come directly out of a heater. Volunteers come around to see if you want a drink or snacks and the IV poles are sleek and slim. It is very evident that this is a brand new facility. In fact, they've only been on the floor for five weeks so the nurses are still getting used to the space. The apheresis unit where I was on Tuesday had only been open for a week.

My mom, Craig and I arrived on Monday morning eager to start the stem cell collection process. After morning blood work came back it was determined that I needed some blood transfusions before I could start the collection. My platelets had dipped too low and with a deficiency there is worry for excessive bleeding as without enough platelets, my blood could not clot efficiently. My red blood cells and hematocrit were also very low - they dipped lower than they ever have. This left me very anemic, weak and lethargic. It explained the naps that I had needed in the days previous. The drop in counts wasn't at all unexpected - this is what happens after the ICE chemo (and what is also hopefully happening to the cancer cells).

I have never received a blood transfusion in my life and had no idea what to expect. Let me tell you, I never would have thought that platelets are yellow or that I could have an allergic reaction to the blood cells because of something the donor ate that day. I had several nurses throughout the day, and luckily each were very happy to answer all of our questions and were able to put me at ease about the whole process. It was mostly Sunshine, a young nurse with a cute Victoria Beckham haircut, blue fingernails, a quick wit and blunt nature who took care of me. She was straightforward and funny – and liked to pick on Craig. We hit it off immediately.

I received the platelet transfusion first. The bag was hung and the blood cells were sent in through my port. They gave me pre-meds of Tylenol and Benadryl anticipating any kind of reaction I might have. I didn't feel anything as it entered my body - just woozy from the Benadryl, which I don't do very well with, especially on an empty stomach. I hadn't eaten since the night before and wasn't allowed to until it was determined whether I would need to go through a catheter placement procedure. The transfusion took close to two hours. During that time I also received another Neupogen shot. The nurse (not Sunshine) sent the meds into my arm painfully slowly trying to avoid it burning but it made it a lot worse and I was left with a big 'ol bruise.

The PCA, Wade, kept us entertained through much of the day. He is a spunky little guy, always cracking jokes and has a very obvious passion for his job. For example, yesterday he told me that I have the "vital signs of a pimply faced teenager." The day before he brought over a deck of cards and performed a trick for me. On day one he brought us over a list of their DVD collection and would pop over to check where we were in The Truman Show. I drifted in and out of sleep in the heated recliner under my cozy blanket until the last yellow cell dripped in.

Then it was down to the apheresis floor where I would get my stem cells collected. At this point, we had gotten the results back from the lab saying that my CD-34 indicator was 20, meaning that I had plenty of stem cells to be able to collect - great news. We'd first have to have the apheresis nurses look at my veins to determine if they were useable. Otherwise, I'd have to get a catheter placed in addition to the red blood cell transfusion.

The nurse, Winsome ("You Winsome you lose some" she said as she introduced herself) gave me a stress ball and started examining the action. I squeezed that sucker with all my might, but to no avail. She needed a big vein to work with as the apheresis machine pulls and inserts blood at a great velocity and a skinny vein wouldn't be able to handle it – never mind one that was full of scar tissue.

"Sorry hun," she said. "Great white blood cell count, but not so great veins."

She assured me that it would be better in the long run because with the Quinton catheter would allow me to have my arms free during the process and I wouldn't have to worry about holding still for four hours at a clip. Whatever, all I could think was that this meant yet another surgery, yet another scar. And, more time without eating. I don't do well when my blood sugar is low - ask my husband.

It was off to surgery in the Interventional Radiology area of Yale New Haven Hospital. At this point it was already nearly 2pm and chances of actually being able to collect stem cells that day were slim to none. Oh, and did I mention that my stomach was still grumbling? I forced Craig to give me a piece of gum even though I wasn't even supposed to drink anything because I was so dehydrated and weak I couldn't take it. I sucked all the sugar and the one calorie out of that watermelon mint Trident like it was my job.

I had to change into a familiar hospital johnny but was allowed to keep my pants on – always a plus! Suddenly I got very itchy and noticed hives starting to creep up. This was something that I was told to immediately alert a nurse about as it could be a reaction to the platelets. One on my arm ... one on my chin ... one on my forehead ... the back of my neck. The pre-op nurses were concerned and had to call back over to Smilow. More and more time passed before I got clearance to proceed as the hives faded.

I was extremely wary about the idea of having a cathether inserted into my neck and turns out, my nerves were justified. It was right up there with my first bone marrow biopsy as one of the most unpleasant experiences of this entire bout with cancer. It was just plain awful.

I was told that 90% of people do it without sedation so I thought, what the hell? If old people and little kids can get through it, so can I. Well, it wasn't easy. I was laid out on the surgery table and they placed draping over my head so that I had about a six inch window of light and fresh air.

"Are you claustrophobic?" They asked. "No, thank God," I thought, as this would be a claustrophobic's nightmare.

While under my tent of sterile draping they cleaned and sanitized a huge area at the right base of my neck prepping it to be sliced open. I kept my iPod playing in my left ear hoping that it would calm me and that it would drown out some of the sounds of what was happening. However, that didn't really work as everything took place so close to my right ear.

The surgery fellow who performed the procedure was extremely kind and friendly though he kept calling me "Ma'am," which I know is supposed to be respectful, but it made me feel old. I didn't have the energy to request another salutation. He stuck a needle into my skin several times in several areas to numb it all up. Similar to when a dentist slides a needle into your gum before a tooth extraction – and equally as pleasant. Then, once my neck was numb, he would talk me through what was going to happen so that I'd know when to expect a "pinch" or "pressure". The "pinches" came when he sliced open my skin over the vein, then again when he stuck in yet another needle in two different places to sew in the sutures. Even though it was numb, I could feel my skin being pulled along with the fiber as if it were a torn shirt being mended. The "pressure" came when he was jamming the plastic cathether down into my right interior jugular vein. It was kind of like sticking two straws into your vein. Sick, I tell you. I could hear the length of the cathether tubing being pushed down into my vein as it ran alongside my right ear. A quick whipping noise akin to reeling in a fishing line, but thicker.

"We've just got to widen up your vein here," he said as the second tube went down beside the first.

It took everything in my being to remain calm, to keep my head turned to the left, to keep breathing and not freak out. I knew that if I moved I'd risk him slicing my jugular – you know, what Jack Bauer does to torture people with a slow, painful, blood oozing death. I gripped my mala beads and moved around the circle: "one bead, one breath," as my boss, Garret, told me to do. It relaxed me immensely and I would focus on my tense neck and try to release the muscles as best I could while Jack Johnson island tunes played in my ear and I visualized myself being anywhere but on that cold, steel table.

Luckily, the whole crew who performed the procedure were very cool and very laid back. All men - so there was a lot of talk about funny, raunchy movies. We talked a lot about Rocky - well, as much as I could through my little tent, about music, about Reggae. This helped to keep me at least mildly sane.

After about an hour it was all over. All I could think about was getting something to eat. At this point I was seeing stars as all I had in me were drugs and I was loopy from the strength it took to make it through that placement.

Now after 3 p.m., I was wheeled into post-op where Craig was waiting. When he asked me how it went, all I could muster was "I got through it and that's all I can say right now." I got teary even thinking about trying to explain it and had no desire to even know what this new outgrowth of my neck looked like.

The nurse brought over a boxed lunch and it might as well have been foie gras tossed in caviar with a truffle sprinkle. I devoured that chicken salad croissant sandwich with abandon. It was the most delicious thing I had ever tasted, though at that point, even elementary school cafeteria brand meatloaf would have been melt-in-my-mouth luxurious. My headache faded and my shakes stopped.

Half-way through my sandwich Kathryn was back to get me for the red blood cell transfusion. I had to ask her for some time. I needed to get dressed, to eat, to breathe. It had been such a long day. We'd been at Smilow since 7 a.m. She gave me 20 minutes before I had to be back up on the medical oncology unit. I chewed and breathed and got my bearings back.

We reconnected with my mom who had been waiting patiently in the lobby and were back to the heated recliner in a different pod this time. These nurses were not happy to see that I was there for a transfusion that late in the day. They certainly did not want to stay past their shift. I was so tired that I had no strength to feel offended. But my mom and Kathryn took care of that, ensuring that no, my blood bag would not be taken down at 5 p.m. and that there would be a late nurse there to care for me.

It was more Tylenol and more Benadryl then one unit of red blood cells. Kathryn told me that after the effects of these transfusions set in I would feel like a demi-God the next day and then a super hero when I received another unit the following day. I did not believe it at the time that's for sure as I felt like a slug that had been shriveled on concrete after a punky kid dumped salt on me.

It was 5:45 p.m. and finally the IV beeped that the transfusion was over. Sunshine came and took my temp - 100.2. She was just as upset as I was knowing that this was not good. I begged that they didn't have to keep me. Luckily, it was cleared that I could go home with instructions to take my temp that night again before bed. If I spiked a fever I had to call the on-call fellow and would likely have to come back to Yale.

On the more than one-hour drive home in the rain all I wanted was pepperoni pizza. I have not eaten pepperoni in years. My dad obliged when we called him from the car and by the time we arrived home, there he was at my house with a piping hot one from Little City.

As tired as I was, it was hard to sleep with the two prongs sticking out of my neck and the worry that if I turned the wrong way, the whole catheter would yank out. I think both Craig and I slept with one eye open. But good news was that I was fever-less.

On Tuesday it was back to Yale and with all the pre-work that was done on Monday, it was finally time to actually collect my stem cells (after a transfusion of one more unit of red blood cells). On this day, morning blood work showed that my CD-34 indicator had risen from 20 to 103 overnight. This was a great sign and showed promise that I would easily have enough to collect in likely just one day on the machine.

My nurse was Winsome, the same woman who had examined my veins the day before, a wickedly smart woman with an easy and contagious laugh and a musical Caribbean accent. She answered myriad questions that Craig and I asked with well explained answers and gave us a much greater understanding of how the whole process worked. She also had fun teasing Craig (it seems all the nurses do), worried that he wouldn't be able to handle all the blood and the set-up as he kept getting all smily and giggling. She jokingly threatened to kick him out for fear of him making me nervous. But she quickly learned that Craig is always smiling and laughing – that's just how he rolls. And that he has a deep fascination of all the gadgets, needles, tubes, dressings, drugs involved in all of this.

After she got me all hooked up to the apheresis machine, she said from that point on it would be like watching paint dry. To us, it was fascinating. And, I got two blankets out of the warming oven, plus another delicious boxed lunch on the house. Just as Kathryn said, I did feel like a demi-God with so much more energy from the transfusions.

Turns out, the CD-34 predictor was right. In just four hours, they were able to collect from me 12 million stem cells to be frozen for my later use. This is much more than I'll even need, which is 7.5-10 million, to have enough to recover from the chemo. I was so relieved and feel confident that this is a sign of more good things to come from this whole stem cell transplant process.

Yesterday, it was back to Yale, but this time I was excited because I was going there to get the Quinton catheter taken out. The doctor took me into a private room and with lots of disinfecting ointment, a clip of the sutures, and a swift yank while I had to "hold my breath and bear down like I was having a bowel movement," my jugular was once again free. The doc immediately jammed gauze backed by his two strong fingers into the hole in my neck and held the pressure for a solid five minutes to stop the bleeding then dressed it in more thick gauze and clear covering. Being able to sleep on my right side again without the worry of waking up in a pool of my own blood last night was heaven.

Step one is over and I couldn't be happier with the results.

Craig videotaped me explaining the whole stem cell collection process in the embedded You Tube video. It is much easier to describe with a visual as the whole collection is not necessarily an intuitive process or one that's easy to wrap your brain around. Hopefully this is mildly helpful:


Sunday, March 28, 2010

Entering the Unknown ... Again

To say that I'm not a little anxious about the start of this stem cell transplant procedure tomorrow would be a lie. The hardest part of preparing myself for it is that I really can't prepare, at least not mentally.

I'm having trouble wrapping my brain around it all and there are still so many unknowns and so many variables. I am a planner by nature and am also a very visual person. I like to know what I've got coming at me. But tomorrow, we'll be on the road at 5:30 a.m., arriving in a brand new cancer center that I've never been to filled with nurses I've never met and spaces I've never explored.

It's possible that we'll arrive tomorrow (I'll have Mom and Craig in tow) only to find after my bloodwork is read that my blood cells aren't ready for retrieval. If this is the case, we'll have to turn right back around – try again tomorrow.

If my bloodwork is good then the nurses will examine my veins for their viability and determine if they're strong enough to handle the apheresis machine process. If they're determined to be too scarred, too difficult to work with, then it's in for yet another surgical procedure. Hence, I can't eat or drink tomorrow morning, one of my least favorite directives. They'll have to put another catheter into a large vein in my chest, a temporary one called a Quinton catheter, which has an in and an out valve.

So, as you can see, the order of events and really what those events are is all up in the air. I'm just trying my best to let go of control and let whatever needs to happen happen. I hope the nurses are prepared for a peppering of questions as I try to understand all of this.

It's not just tomorrow's possible procedure and the whole harvesting process, but it's also the fact that now I'll be receiving my care at Smilow Cancer Center, a behemoth of a place that I have never stepped foot in before. It's a brand new facility, which is exciting, but I don't know the city of New Haven at all; I don't have the lay of the land; I don't know any of the people that work there; and I've only met my new oncologist for a brief 15 minutes back in February.

This is a far, far cry from what I am used to. I know Hartford Hospital in and out because, well, I work there. I know all of the lab techs, secretaries, and nurses at the cancer center and they all know me by name, they know my case, they know where I'm coming from and where I'm going. I know who gives the good shots. I know who to ask for when I need something. I know all the procedures and how the place runs. I have the phone numbers at the Avon and Hartford offices memorized. I even know all the valet parking attendants at the cancer center. I don't even need to hand them my stamped ticket, they just know my car and go and get it for me. And of course above all, I'm going to miss Dr. Dailey and the rapport and understanding we've established.

Now it's time to get used to a whole new world. I just hope that I can turn these unknowns into understoods. I just have to remind myself that this is how I must have felt last May when I was first diagnosed and had no idea what chemo really was, had never heard of Hodgkin's disease, never mind a port-a-cath, platelet count, prophylactic antibiotics, anal fissures, skin burns, embryo creation, and bleomycin side effects. I did my studying and have passed the first set of exams. I guess it's time for second semester?

We'll start with finding the right parking garage.


Saturday, March 27, 2010

Clichés

As a writer I try to avoid clichés, phrases that are at times so overused that they become meaningless. But lately, I find there are a few that I ponder often for their veracity. I've come to realize that they've become clichés because they succinctly say "it". "It" being what we're trying to convey, wrapped in a tight phrase, tied with a neat bow, for a package that's easily relatable to anyone. So today, I'm letting my cliché guard down and am going to give credit to these phrases that have passed from generation to generation for a reason.

"There's No Place Like Home
I couldn't say it better myself. Home is where the heart is ... . I love, love, love our home. I love its covered porch. I love its big picture window. I love its dining room skylights. I love its gingerbread trim. I love that it's a hybrid space of old and new. I love thinking about what happened in the 1800s Baptist church that it once was. But most of all, I love how I feel when I'm in it. We've decorated it freshly and eclectically – our personalities on display. I feel so comfortable here, and there is no place I'd rather be, especially when I'm feeling awful. I love that I can snooze on our sectional couch – a fantastic Craigslist find – and gaze at the georgeous Japanese maple outside the living room window. I love that our bedroom is so airy and filled with sunshine when I awake each morning. There's nothing better than sitting in my rocking chair reading on the front porch or talking with our neighbors – neighbors that are beyond what one could ask for.

"This Too Shall Pass"
People often say this to me and I often say it to myself. It's one of those phrases that's hard to believe when you're in the middle of "this," but once you come out the other side you realize that nothing is forever. I felt so, so, so awful for several days following ICE chemo and at the time it was hard to comprehend that I'd ever get back to myself again ... but I did. It amazes me every single time how much my body can be knocked down and still have the capacity to bounce back. So it's true, no matter how much harder each step in this process has been, there is always an end and soon enough the pain is a distant memory – so distant that it's hard to even remember how badly I felt.

"Dog is (Wo)man's Best Friend"
I never feel alone because I always have Sammy's companionship. She's there laying on my feet when I'm curled up on the couch. Or, more often, laying right on top of me. She follows me into the bathroom. She sleeps on her doggy bed and watches me with one eye open when I'm feeling particularly bad and have to retreat to my bed upstairs.

A neighborhood kid summed it up best. Craig and I were sitting in our anti-gravity chairs on the lawn the other day and this little boy with dark chocolate skin and milk chocolate eyes and the bounciest tousle of dreds came into our yard and said:

"Excuse me. Can I play with your dog?," pointing over at Sammy who was rolling around in the grass with her tongue dangling wildly.

"Sure," we said.

They played for nearly an hour. They played fetch with the tennis ball. They passed the close-to-airless basketball treasure that Sammy once miraculously and instinctively dug up from nearly 2 feet underground beneath the pine tree. They chased each other around the yard.

While tousling her ears, we overheard the boy say to Sammy: "Sammy, if you were a human, you'd be a really good person."

I concur.

"What Doesn't Kill Us Makes Us Stronger"
I know now more than ever what I'm made of and that no matter what challenge I'm faced with, I can conquer it. I know this is a valuable lesson that will serve me well – it already has. I don't necessarily believe this cliche as it is, but more a modified version. I think that what doesn't kill us gives us the opportunity to realize how strong we already are. That it's not the adversities that make us strong. Instead, the adversities bring out the best in us. There've been many times that I've looked back on a particularly bad blood drawing session or a surgical procedure and thought, How the hell did I get through that? I'm sure there are many more of those moments to come, but it's tests like this cancer journey that has made me realize how strong, adaptable and resilient I am and truly believe that this is the case for anyone faced with something of this magnitude. If there is a good thing to come out of the war that is cancer, it's that you learn that you can conquer the battles.

"You Don't Know What You've Got 'Till It's Gone"
To say that I've learned to better appreciate everything in my life is putting it lightly. Going through these treatments that have knocked me on my ass at times has taught me how much I appreciate my body, my mind, my abilities, and my freedoms. Being tied down to a strict regimen of daily doctor appointments, being quarantined, and being out of my body and out of my mind at times has made me realize how good I have it. Not having full control of my life right now has allowed me to step back and take a look at myself and everything and everyone in my life from all different angles.


I'll keep these clichés in my back pocket to reflect on from time to time as this journey surely isn't over ... it's only just begun ... and won't be over until the fat lady sings. I've heard it through the grapevine that it won't be a walk in the park, but I'll look for the light at the end of the tunnel and keep on keeping on with my eye on the prize – one step at a time. I'll make lemonade out of lemons and find the silver lining in every cloud.

Thursday, March 25, 2010

In the Business of Making Stem Cells

Good news is that I no longer need the third round of ICE chemotherapy that we had originally been planning for. Because my "b" symptoms have subsided, there are no palpable lymph nodes, and I've bounced back well from the first two rounds it was decided between Dr. Dailey and my new oncologist down at Yale, Dr. Cooper, that we should go ahead into the stem cell transplant. It was explained to me that there is a delicate balance between giving not enough and giving too much chemo. Since I received the extra chemo administered in the pediatric regimen, I've gotten nearly as much as an adult would in three cycles. This should have effectively put me in remission. They don't want to give me too much more of this chemo at the risk of wiping out my bone marrow's capability to produce new cells. This makes me ecstatic as it means that I may never have to be an inpatient again!

So, here we are. This week I have been in the bone-wrenching business that is making stem cells. Starting Monday I have had a double-dose shot of Neupogen every day and I'll be continuing those shots through Sunday. The Neupogen is forcing my bone marrow to create great amounts of stem cells - so much so that they'll be pushed out of my marrow and into my bloodstream so that they can be fished out. I get the shots in the back of the arm. They don't hurt - just burn some as the drug is going in, but really not bad at all. I'm used to them as I would receive them during my ABVD chemo treatments, though this is twice the amount per shot so that means twice the amount of burning. I also thought it would mean twice the amount of bone pain as my marrow is being worked so hard, but that really hasn't been the case. Every once in a while I'll feel whopping pain in my back and in my hips mostly, but I'm able to kick it with a couple of Extra Strength Tylenol. I haven't had to fill the vicodin prescriptions I've been holding onto. However, driving to the cancer center every day for the shot has gotten old. I have never been able to leisurely sleep in since all of this is started. Every day there is some kind of appointment that I need to get to. But, you do what you have to do and that's it.

On Monday I need to be at Yale New Haven Hospital's Smilow Cancer Center at 7:15 a.m. for what is hopefully my first day of stem cell collection, pending my cell amounts are high enough. The next order of business will be to asses my veins and see if they are viable enough to use for the collection procedure. Otherwise, I'll have to have another type of catheter inserted in my chest, which they will do with local anesthesia that morning. Then I will be hooked up to the apheresis machine which will pull out my blood, snatch out the stem cells, and put the filtered blood back in. I'll come back and do this for however many days it takes until they have enough for them to store and freeze for later use. After that comes the scary, high-dose chemo and then the re-transplant of those stem cells I collected pre-chemo. These cells will help to rebuild my bone marrow and immune system which the chemo will have wiped out completely. To be blunt, without the stem cell rescue, the chemo would kill me.

Over the last several days I've had myriad of emotions starting from total fear and dread to where I am now, which is again focused on getting myself strong and ready to kick ass. I've had much blood work done to be sent down to Yale and have had to fill out lots of paperwork and read over consent forms, the most disheartening being the "Consent to Receive High-Dose Therapy with Stem Cell Rescue for the Treatment of Hodgkin's Disease." This document is a doozy and what sent me into a mild anxiety attack on Sunday. Basically, it's full disclosure of all the possible side effects that could occur, it gives some harsh statistics and numbers, and talks about the risk factors, which include leaving me susceptible to future cancers like untreatable leukemias.

But I have a lot going for me and I like to think that I'm not the "typical" patient. Overall, I did really well with the ICE chemotherapy and Dr. Dailey tells me that many of his patients who go through the stem cell transplant procedure find the ICE to be more difficult than the BEAM chemotherapy that I have to come. I'm hoping that this is the case for me. I am strong. I have been walking every day but the 3 dead-to-the-world post-chemo days, have been working out with exercise bands and doing yoga at home as I'm not allowed around the germs a studio would contain. I've been eating well - lots of organic and whole foods, and my blood cells have also made a good showing with time. Right now, my white blood cells are again so low that I'm neutropenic and am again on prophylactic antibiotics, but that's to be expected, and I'm 1 point higher than what I dropped to after the first ICE round. Tomorrow I'll find out if I need a blood transfusion to get me up to the required levels before I can go through with Monday's procedure.

To balance out the medical jargon, I've found it most helpful to talk with real people that have gone through this. It's helpful to hear that there's a light at the end of the tunnel and that the whole process really isn't that bad. Today I spoke to Ethan Zohn, the winner of "Survivor Africa." He's in his thirties and went through chemo for Hodgkin's Lymphoma, relapsed quickly, and was back in for ICE chemo followed by a stem cell transplant. I've been following his path all along as he was diagnosed in 2009 just a couple months ahead of me. I was connected with him through my friend Jack at the I'm Too Young for This! Cancer Foundation.

Talking with Ethan certainly helped to quell a lot of my fears and helped to reinforce my beliefs in a lot of mechanisms that I've been using to get through everything I've been through so far. He is also a big advocate of exercise, yoga, visualizations, meditating, and diet and gave me a lot of tips for how turning to them helped him get through his transplant. He told me how there were days that he wasn't able to eat hardly anything because of the nausea but that he would force himself to at least drink a shake or a smoothie to get something in and also was devout about downing lots of fluids. He also told me how important it was for him to get up and move/exercise every day even while in isolation. Some days that meant just getting the motivation to get to the shower, but when he was feeling a little stronger he had exercise bands and weights that he brought with him, would do yoga stretches, etc. and swears that this made such a difference for him. I'll be packing them in my bag as well.

He told me that he wouldn't kid me, that it's not going to be easy, but that it's manageable and you get through it. He told me not to be shy, not to try to be a hero, and to ask for what I need when I need it. He told me that I have science on my side and assured me that within 30 days he was back at the gym and walking outside and that he's feeling stronger and that he's there at any time if I have any questions. This is what I'm talking about when I'm talking about being part of this great cancer community.

During his treatments Ethan recorded video blogs for People.com. Here are links to a couple that I found helpful:

Sunday, March 21, 2010

The Dream World

Whether it's the drugs or my suppressed anxieties, my dreams have been more vivid - both beautiful and frightening - than ever in my life. Often, I don't like the answer when I try to analyze them, but sometimes, it's these dreams that give me hope.

I receive a regular showing of what I've come to call the "soldier dream." I've been having these dreams long before Beyonce's Grammy performance of "If I Were A Boy" that featured a riot police-like entourage. However, the choreography in that brought my dream to life in an eerie fashion. In these dreams there are thousands of these steel, ebony armor-clad men coming at me in syncopated rhythm. Some are marching on foot and some are on their stomachs doing the Army crawl. As they head toward me they swiftly turn their heads from left to right in perfect synchronization with their movements. Left. Right. Left. Right. Stone-faced and powerful they head toward me. When they reach me, I wake up. But I'm not afraid of them. They're the good guys. They're my protectors. All of these molded muscled men are on the attack for me. We don't need to call on Freud to interpret that one.

Another frequent offender is the running dreams. Running, running, running away from I don't know what. I never see the attacker. But suddenly my legs will give out or I'll hit a dead end or something will stop me from being able to go forward. I always have a gun on me and I raise it, but I can never, ever shoot it. My gun doesn't work or I just can't get myself to pull the trigger. And then I wake up. Usually in screams and sweats.

Often I will wake up screaming, even from deep naps. Or I'll wake up groaning and trying desperately to call out. There have been times that I've been napping on the living room couch and Craig will come running in from the far other end of the house where he'd heard me screaming to find me in a pseudo-conscious state. He'll have to talk me back to reality and comfort me until I realize that it was all a dream. As mentally taxing as the dreams and the realities are for me I think it's harder for my husband. All throughout the night every time he tosses in his sleep I feel him checking my temperature with the back of his hand on my forehead and feeling my skin for the cold dampness mixed with pooled sweat that he's come to dread but is now accustomed to.

For me the paradox is that once I do ease into consciousness it's my real life that's often harder to face. Waking up and remembering all of this all over again every day - what I've been through, what's yet to come, the aches, the baldness, the scars, the unknown - is what nightmares are made of. People wake up to escape those types of things. For me, I wake up every day and have to try to make peace with what is my reality and garner the strength to get out of bed and face it. Some days are more difficult than others. Some days I just lay and stare. Sometimes I cry. But I just let whatever I'm feeling that day happen and the important part is that I do get up and no matter how difficult it is, I am always able to get back to the realization of how lucky I am to have each day to wake up to and conquer. Sometimes it just take a little longer to get to that place.

There are also the beautiful, beautiful dreams. But sometimes these worry me more, like I shouldn't "follow the light." In one I was bouncing on clouds with a huge group of friends. As I bounced on each cloud, out would burst my favorite things - unreal colors - then all my favorite things would pour down over me like rain. We ran through these clouds and laughed and danced like it was an LSD trip.

Then there are the dreams that I can't figure out. Like last night, I dreamed I was carrying a young girl, maybe two years old, my daughter. She had delicate blonde ringlets surrounding her head like an angel. I was carrying her on my hip and holding Sammy on her red leash on my other arm. Sammy was older. She wasn't pulling. We were at a fair of some sort and the little girl on my hip wanted a balloon. I told her she could have any color that she wanted and she picked pink. I went up to the booth and asked if I could just buy a ballon. We didn't want to go in to the fair. I just wanted a balloon for my daughter. They wouldn't give it to us. There was a fat, grouchy lady behind the ticket booth who said we had to get a ticket for the fair to be able to buy a balloon. I begged and begged and finally said: "Listen lady, I am dying and I have no money. I can't afford a ticket. My child just wants a balloon, please." I was bald. This is the first dream that I've ever had where I've been bald. Usually I have long, flowing hair that I'm constantly playing with.

The woman finally balked and told us to go see "Ted." Sammy, my daughter and I climbed over a huge mound of flattened corrugated cardboard boxes to find Ted. An ashen faced man sucking back a long cigarette came around the mound of cardboard.

"We're here for a pink balloon," I said, trying so hard to stay positive and excited for this wide-eyed little girl on my hip.

"We've only got orange," he grumbled and handed her the white ribbon with a gawdy, 70s-home- decor-orange balloon floating feet above her.

She was ecstatic and didn't even comment that it wasn't pink.

Then I woke up and quietly cried myself back to sleep.


Saturday, March 20, 2010

ICE Round 2: Aftermath

In the past I've thought I felt like shit, but that was nothing. I liken these past couple of days since chemo to feelings of oozy, raunchy, steaming dog shit.

I am completely zapped of energy. It takes a tremendous amount of effort to get myself out of bed and onto another horizontal surface and that's pretty much all I've been doing. When I do get the strength to shuffle around in the kitchen or to walk to the mailbox I return with a pounding heart and have to immediately sit to calm my body back done again after its excursion. What I have to continually tell myself is that this is because my body and the chemo is working so hard against the cancer cells and that my body is trying to bounce back from being ravaged with three days worth of high-dose chemotherapy. But it's hard to keep that perspective when any sudden movements cause a wave of nausea and when my brain just literally can't focus on even the most mundane of tasks.

As Craig said last night, "If you didn't feel this bad, then we should be worried." This makes sense, I suppose. I feel bad because the chemo is working. It is tearing out my insides - literally. The whole first six inches of my throat feel like an auger went through it hacking away at the soft tissue so that it's hard to speak at a normal volume and uncomfortable to swallow. Despite that, I drink and drink and drink - water, Gatorade, Crystal Light, and more water. It's vitally important for me to force the fluids to flush everything out and keep my kidneys functioning well. I also shove the food down my throat no matter how nauseous I am.

Between the steroids and my body's fatigue, I certainly have a big appetite and eating usually curbs the nausea waves. I consider it fuel for the cancer bonfire that's happening inside of me and I must continue to give it the kindling it needs so that it doesn't go out. This means many frequent meals throughout the day - and it's odd things I crave. Last night I couldn't get my mind off Pad Thai so we ordered in and that did the trick. This morning it was banana and peanut butter sandwich then a healthy portion of bacon and spinach. Right now all I want is fiery chicken sausage so I'm working on Craig to light up the grill.

I am proud to say that I have not vomited and I made it past the vomit point of the first ICE chemo. I also have not had a bowel movement ... sigh. But, you take what you can get. I'm on some different nausea blockers this time around. Zofran in the morning and then I have this cannabis-based drug called Marinol. It's synthetic delta-9- tetrahydrocannabinol, the same chemical found naturally in marijuana. It's often used for cancer patients, AIDS patients, people with anorexia needing an appetite stimulant. Side effects are "elation, easy laughter, relaxed mood." Now this is a much nicer side effect list than what I'm used to reading on the printouts for each of the chemo drugs: nausea, vomiting, diarrhea, heart palpitations, rash, hair loss ... . Truth be told I've only taken the Marinol twice. I'm a big proponent of "the less drugs the better" especially with how many I have in my system without a choice. I like to use mind over matter techniques until I just can't take it anymore, then reach for the drugs. I just never want to be dependant. The Marinol does cut the nausea very well, but I wouldn't say I experienced a "high" - not that I would know what that is like - except for that one time in college ... .

Today is certainly much improved over Thursday and Friday and to make it all better it's been hovering above 70 degrees with bright sun each day. So, even though I'm not able to do much, I'm able to lay in my anti-gravity chair, complete with flip-over shade and full reclining capabilities as I just exist outside in the warmth. There are certainly some healing powers to that. Yesterday I reclined so hard in my chair that I rolled right over myself - head in the arborvitae, ass following immediately afterward. My mom and Gramma were there playing Rummy 500 while I floated in and out of sleep all afternoon. My Gramma, who's weak from getting chemo two days ago herself, is the one who rushes over to help me up while my Mom stands turned away from me, hands between her legs bent over laughing and trying not to wet herself - her usual reaction to these types of occurrences. I also almost pissed myself I was laughing so hard at the hilarity of it all as I picked pine needles out of my mouth and scraped the sap off my elbows.

"Does this count as alternating rest with light exercise periods?" I asked my mom after the summersault stunt.

We laughed more - Marinol induced or not, that was funny stuff. I guess my reflexes are a bit compromised.

Wednesday, March 17, 2010

ICE Round 2, Day 3

Today was a tough day. I was pretty much a waste of space. It took so much motivation for me to get out of bed and do any walking or moving whatsoever. My colleague, Michaela, stopped by in the morning with her adorable baby on her way to the day care. That was so sweet and it really gave me the motivation to get moving. So I got a few laps with the IV pole in then it was back to bed and that was pretty much how the day went. I'd wake up and watch a movie or some TV, then back to sleep, then wake up to eat, then back to sleep.

All day I haven't been able to form a cohesive sentence and my mind is moving very, very slowly. I'd catch myself just staring at the wall for a good 30 minutes trying to get the energy to get up to go to the bathroom - which I do so, so often. I am so pumped with fluids it is painful. I have been hooked up to IV fluids since Monday at noon - nonstop. Plus, I'm supposed to continually be drinking and I'm getting the big bags of chemo dripped in. So, I feel like a walking swollen udder. My hands and feet feel double their size and my face especially feels so swollen. Some may mistake my stomach for a baby bump it's so swollen and hard. I feel like I've gained 85 pounds since I've been here but my mom and Craig say it's all in my head ... . Right. The steroids make me ravenous so dinner has been a big dinner and I'm sure that doesn't help with how beefy I feel.

Adding insult to injury is the dryness of the air here which causes my skin to feel so tight and the skin on my hands is just peeling away. Plus I'm struggling with being able to regulate my own temperature. All the drugs and the Lupron which has put me into temporary menopause causes lots of hot flashes and sweats - believe me, my heart goes out to middle age women going through this. The heat waves are unreal. I look forward to a shower at home and my humidifier and new tempurpedic pillow. Plus, of course, a big Sammy hug. Ahhhh.

As today is St. Patrick's Day Craig brought me over a heaping plate of corned beef, chunky garlic mashed potatoes and asparagus from Whole Foods. That certainly satisfied the palate and made me feel like I had a little bit of a St. Patty's celebration, though no Guinness this year - Carbolatnin, Iphosphomide and Etoposide instead. Not exactly an even trade off.

We didn't end up having the St. Patrick's Day parade around the floor. On one of my walks Jennifer spotted me and asked if I was ready to shake my shamrocks. I told her that there'd be no shamrock shaking tonight. Shaking might just put me over the edge. She laughed.

But my mom, Craig and I had a nice St. Patty's evening visit and my Uncle Kevin swung by for a visit as well. Earlier in the evening the vice president of the cancer program came to see me which really meant a lot. We work together in my career capacity here at the hospital and it was so sweet of her to take the time out of her crazy busy schedule to come see me and to offer lots of words of encouragement. It's wonderful to have people around with such positive energy and I am continually so thankful for the amazing care that I've gotten here.

I even landed a massage and a Reiki session back-to-back so I had some good relaxation this afternoon. The Integrative Medicine department here is so integral to the healing process. Something like that can really brighten a day for someone who just has no energy left and can just lay there and be pampered. It was perfect.

Word is that I get to be released tomorrow morning and I am very, very much looking forward to being unhooked and to getting out in the fresh air instead of looking longingly at the sunny, blue sky from my hospital bed.

But for now it's time for bed. I am so, so, so tired despite so much sleeping. I guess there's a lot of action going on in this body. I've got to give my good cells a fighting chance.

ICE Round 2, Day 2

I awoke feeling pretty groggy from a quite interrupted sleep and the effects of the chemo starting to kick in. But once I ate breakfast and got myself moving and showered things were better. Then it was a parade of visitors which was great to keep me distracted from my woozy weakness.

My sister is back from California and my brother is home on spring break so they came by to spend much of the afternoon. My boss stopped by bringing some more laughs. My Dad came along to spend time with me. Our dear friend Leah, who's always bursting with sunshine - even more so now with the glow of pregnancy - came by with a doctored up card featuring Sammy's mug and shamrock sugar cookies. Of course, my faithful husband has been here every evening after work. And, I even had a visit by a real-life clown who provided some fantastic entertainment to my brother, sister and me.

Our good friend Keith, whom Craig works with at the summer enrichment camp he teaches at and who's son I used to babysit for, finished up a gig at The Bushnell entertaining before a kid's show and decided to come over and give me a little show to cheer me up. He was dressed up in all his "Tabasco Pepper" character garb and we just had a blast.

He taught me a few magic tricks. He "tested my reflexes" and had me balancing peacock feathers on my hand and juggling kerchiefs with him. We juggled balls together. He told jokes and had my siblings and I in stitches.

I guess the adage that "laughter is the best medicine" is true. Just before Keith walked in I had called for the nurse for some anti-nausea meds as I started to feel pretty uneasy. Well the drugs never came, and I never needed them after Keith was through. I felt a million times better.

My nurse Jennifer and I talked about the fantastical idea of staging a St. Patrick's Day parade tomorrow around the floor and having all of the patients march banging bed pans and blowing on tubing and such for some entertainment. Then she drew me a very impressive clover on my white board. It's nice to have nurses with a sense of humor.

Craig and I ordered in pizza as the greasy grilled cheese that came on my dinner tray wasn't cutting it. Pizza was delicious for sure. Then a Reiki volunteer came to my room and I was treated with a nice session which got me all relaxed before bed. It was so bizarre because as soon as she saw my face she said: "Are you Karin, the Karin that writes the blog?" Turns out that her nephew dates someone that I went to middle school with who sent her my blog a while back and she was all caught up on my life. My world seems to be shrinking more and more every day when I realize all of the connections that we have to each other. It's a comforting feeling to constantly be reassured how amazing the interconnectedness of the human race is. You only have to peel back a few layers in a person to find some commonality and mutual relationships.

After the Reiki session I crashed real hard right after Craig left last night - all that stimulation got to me I guess. I fell asleep without the aid of any meds and never even took any anti-nausea meds before bed. I slept through all the med switchovers during the night and slept solid until 6am. Still woke up very lethargic, but one more day down. And that's huge. I can't wait to get out into this beautiful weather - high 60s and sunny - I'm just so glad that it's supposed to last all weekend so that I can soak a bit of it in too.

Monday, March 15, 2010

ICE Round 2, Day 1

Disclosure: I am three hours into high-dose chemo drugs and just popped an Ativan so forgive me if this post is incoherent.

Today was pretty uneventful. My mom took me into the hospital for check-in. We first went to the cancer center to get my blood counts checked and have a quick meet-up with Dr. Dailey. My counts looked good - I'm a bit anemic, but that's usual. I always have very low blood pressure and am always anemic. So they sent me back up to "Hotel Bliss 5" where I checked in for my reservation under Diamond. This time my room is on the complete opposite corner of the large floor. Same set-up - painfully small TV, own bathroom with the hat that I have to pee in, neutral blue curtains, a white board where they write the names of the caregivers as the shifts change, a sink and big mirror. But my view out this window is beautiful, centered in it is the gold-domed state capitol, which looks even more beautiful lit up at night. I can also see the building that my office is in - strange to see it from this perspective.

It was nice to see that all the nurses recognized and remembered me though I came without hair this time. As suspected, there's not even a stubble left, in a matter of a couple of days it all let go so that my head is now naked and smooth except for some soft spiky blonde hairs. I got a lot of compliments on my nice head shape - I'm glad the cone head that I had as a baby faded away!

It was great to have my mom here with me all day today to pass the time. Nothing happened until we were here for about four hours, around noon, when my port, which was accessed earlier, was hooked up to fluids. So we took some brief naps between visits by PCAs to check vitals, visits by food & nutrition to take my orders, etc. As I've said before, it's not easy to fall asleep in a hospital - no matter how tired you are. We looked at bridesmaids dresses for my mom and I helped her set up a Facebook account. Soon it was time for Ellen and Oprah and all was well.


She left and Craig relieved her after he got out of work and went home to take care of Sammy. It wasn't until after he got here - at 7pm - that the chemo finally got started. I guess the cancer center was packed today and they had six other patients on this floor that were also getting chemo today so the pharmacy was very behind. It really doesn't make a difference to me, and I almost prefer starting the chemo late because then I can just sleep off the wooziness and nausea rather than having to be awake and deal with it. In total the Etoposide and Iphospohmide (too tired to look up the spelling) take four hours. I've got about 45 minutes left. Then I'll receive a bag of Mezna (spelling?) every three hours throughout the night to run for 15 minutes each. This medicine will protect my kidneys which can be wrecked by the harsh drugs. I'm hoping that this Ativan will knock me out enough that I can sleep through the frequent visits and hope that they can just switch over the tubing without having to disturb me.

The sounds here are a bit eerie. The wind is howling outside the window and sounds almost like an ambulance siren it is so loud and violent. This evening I heard other howls, but howls and cries of pain from another patient on the floor. This floor is home to both oncology and end-of-life patients so there is a deep sadness irking from a lot of the rooms or maybe in some cases it's a sense of peace that they are letting go of whatever they may have been suffering from. I see a lot of large groups of families coming in to visit certain rooms, a tell tale sign that they are coming to say their goodbyes. It's hard for me who's fighting so hard for survival to be surrounded by that and as much as my heart goes out to them and to their families, when I do my laps around the floor with my IV pole I try not to look in the rooms, not to look in their eyes, as if I locked sight with them then death would head for me too ... and I'm not ready for that. I'm just here to get the medicine that is killing my cancer cells. I am not here to die.

Woozy. Nauseous. Antsy. Tired ....

Thursday, March 11, 2010

Full-Time Patient

I’ve been out on medical leave now since Feb 8, just over a month, though it seems like forever since I’ve been at work. Being on leave is an interesting journey in itself. I thought that I would never be able to stop thinking about my work responsibilities, to stop worrying about deadlines and projects that I was managing. What I’ve found is that my mind is so filled with cancer-related and life-sustaining information that I don’t even have room to think about work.

This revelation has just reaffirmed my choice to step away fully and completely focus on my health and all that goes into regaining it. Mentally I wouldn’t be able to give my job the attention that it deserves and the devotion that I require of myself in my career. Practically, with all the required hospital stays, the blood work appointments every other day, my forced quarantine, and the debilitating days when I am completely wiped of energy would make it impossible to work. It’s only going to get harder next month when the one-hour treks to Yale-New Haven hospital begin.

What makes it easy to step away is knowing how capable, intelligent, and adaptable the team I work with is. For someone who may be a bit Type A, it is greatly reassuring to know that all the projects I was working on are in extremely capable hands. I do feel awful adding to the already full hands of my co-workers, but not once did they instill guilt upon me and immediately told me I was ridiculous when I would make any attempt at apologizing for having to step away. They practically pushed me out the door telling me that I need to focus on myself and to not think about work for a minute. I know that this is not the case everywhere, and I feel so lucky to have that support. Knowing that people have my back helps me to stand up tall when I’m feeling unstable.

Though my job is protected through the Family & Medical Leave Act (FMLA), an unfortunate reality is that though I’ve been paying into a Short-Term Disability policy with an outside company, I can’t tap into it. I got a harsh denial letter in the mail citing a pre-existing condition clause that states that my policy will not pay out for anything related to a pre-existing condition until I've held the policy for 12 months. Though it would pay only 60% of my salary, that’s 60% more than $0 so it hurts the wallet. But it’s the principal of it, the discrimination toward those who are deemed “disabled” that burns me up much more than the missed Benjamins.

I had a long conversation with the head of sales for the brokering company that set me up with the plan. Turns out Craig taught both of his daughters and he was their absolute favorite teacher. Well, favorite teacher or not, there was nothing they could do to convince the big firm to pay out my policy. The clause was something that was not revealed to me and the details of it something that certainly were not made clear. I distinctly remember the day I signed up during open enrollment. I was still wearing a scarf on my head and I asked very pointed and direct questions about this very thing – already experienced with being denied life insurance because of my “pre-ex”, as these salespeople flippantly refer to my condition.

We discussed that there were no medical questions asked for the policy, that it was guaranteed issue, and the sales rep and I specifically discussed my cancer and how this policy would give me the capability to not have to work during my treatment.

I remember him saying: “Chemotherapy is awful. Would you have worked during it if you still could have gotten paid without working?”

Well, what I find out now is yes, I’m covered if I break my leg, if I have a heart attack, but anything cancer-related? Nope, sorry. Denied. And this will be the case for 12 months.

The brokering company was very empathetic and apologetic for the confusion caused, which I appreciate. Though, it still means no cash flow. It is what it is and it’s an unfortunate reality that comes with a condition like this. The fact that anyone has to deal with something like that on top of everything else is a sad statement on our society’s attitude toward those with a disability.

Living with one income is an adjustment, especially as the medical bills pile in and the house expenses inevitably continue. Insurance or no insurance, out-of-pocket medical expenses are no joke. Life continues whether you have one paycheck or two. Now that we finished our taxes and I’m armed with our 2009 numbers we’ll be applying for some co-pay and medical bill assistance from a slew of cancer foundations and charities that offer it. We’re certainly not the first ones to run into these issues, and it’s assuring to know that there are so many resources out there. Whether we’ll be granted any assistance is another story, but it’s worth a good, college try. If not, we’ll make it work. I suppose this is what rainy day funds are for. My heart just aches for those who are going through this on their own with no income, no insurance, no job waiting for them when they get better.

Though it’s only been a month, knowing that I don’t have an income right now causes me to think differently about everything and to be much more conscious about where our money goes. Yesterday, I sewed up a hole in a sweater, rather than buying a new one, all by my nondomestic self. I’ve been getting creative with cooking meals at home rather than going out and am working on squelching my affinity for bargain clothes shopping … the “but it’s only $10” mentality. For example, today I brought my “free panty” coupon into Victoria’s Secret and walked out with just my free panty as much as the sales woman tried to convince me to use the $10 off a purchase that also came with the coupon. It took a lot of self-restraint not to make that purchase, which inevitably would have cost me $20 that I wasn’t planning on spending … I always fall for that trap.

My husband’s knack for bartering and negotiating has come in handy as he’s made calls to our utility providers pulling the “cancer card” and getting them to reduce our rates. Plus, he’s starting to sell some of his phenomenal wood wall hangings that he crafts which is great for him as an artist and for our bank account.

I know we’ll be fine. But while we live through these few months of limited means I have no doubt that it will teach us some valuable lessons. There’s something to be said about having a thinner wallet and big dreams. You find new ways to get there.

Wednesday, March 10, 2010

Hair Today, Gone Tomorrow

The hair that finally grew back enough to cover my head after the ABVD chemo treatments is now gone. My scalp just couldn't hold onto it. The follicles opened up and out it came, like my head was making an offering to the chemo Gods.

It happened real fast, exactly two weeks to do the day that I had my first day of ICE chemo - exactly as Dr. Dailey had predicted. It started with a familiar scalp tingling on Sunday - tremendously itchy and throbbing. Then Monday the hair cascade began. Tuesday my scalp ached with that feeling you get when you've had a ponytail in too long or when your hair's been tied up tight in a bun with jabbing bobby pins for a dance competition. It's the feeling when you let your hair unravel and then rub your scalp to let the circulation back in - it hurts to touch it and to move the hair around, but you can't stop doing it. Or at least that's me anyway.

Tuesday morning I woke up in a nest of short, dark hairs that covered my pillow. Disgusting. The shower was worse. The water added weight to my hair that my scalp just couldn't hold on and out it came in thick, black clumps. Enough hair to coat one of those creepy hairless cats. Much Drain-O needed. All day yesterday hair fell out at the slightest touch and the ache in my scalp only increased.

As soon as Craig got home he looked at the fistfuls I was pulling out and we both knew what had to be done. Out came the buzzers again. I can't just sit by and watch hair pile up around me. It was time to take matters into my own hands. So Craig took me up to his workshop and buzzed it to the shortest length - after a little fun with some mohawk sculpting. My scalp was immediately relieved and I felt freed. I really don't mind the G.I. Jane look and Craig actually prefers it (or so he says.) I didn't have time to get attached to the crazy curled, dark brown hair that had grown from November to now so it wasn't nearly traumatic as it was parting with my long, blonde locks last May. It's just strands of fibrous protein anyway.

This morning I woke up to a pillow with a case of five-o-clock shadow. The stark white of the pillow case was contrasted by a healthy amount of little black stubble. It won't be long until I move from G.I. Jane to Mr. Clean.

Chemo goes after all fast growing cells, hair cells being some of the fastest, so it only means that the chemo is on the attack. I can only imagine that the cancer cells are leaving my body just as quickly as the hair is leaving my head.



Tuesday, March 9, 2010

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.

Sunday, March 7, 2010

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.