Saturday, May 29, 2010

Day +10 RELEASED!!!!!!!!!!!

Friday, May 29, 2010, 10 days after my stem cell transplant my body recovered to the point that it was deemed ready to be sent home. My mind and spirit got to come along too, but they've got a lot of catching up to do. My emotions are all over the place right now.

Throughout Thursday night I never spiked a fever. My first temp check of the day on Friday registered at 98.6, an exactly normal temp. It stayed that way for the rest of the day. I was physically feeling a lot better, just beyond tired. I really never slept more than 4 or so hours a night for an eight day stretch and sleep was broken all the nights of the chemo infusions the week before so it was safe to say that I was sleep deprived.

The attending doctor and the team of residents and interns came in to see me in the morning and told me that my white blood cell count had completely recovered – 7.5 (from 0.1 on Saturday) – my immune system was back. They told me that as long as I could "stay cool," meaning no fever, that they could possibly discharge me that evening or the next morning at the latest.

I was kind of in shock.

"Would you like that?" he asked.

"I would love that," I said. "Even tomorrow morning would be fantastic."

Before they came in I was poking around my soggy corn flakes in a plastic box mentally preparing myself for starting the course of steroids later that morning and preparing myself for another three days of hospital food and IV pole tethering.

Well, I did "stay cool" all day in fact and because I never spiked another temp, the steroid regimen was never needed. My body embraced my stem cells without a problem. The persistent fevers were just chalked up to my severely compromised immune system - something was going on inside me that it couldn't fight but as soon as those stem cells birthed enough white blood cells at the direction of all those Neupogen shots they started taking care of business and got me back to normal temp.

Craig was there with me for the day and we worked on some projects together to pass the time. I received some potassium and phosphorus repletions to bring up my levels and continued on my oral antibiotics. They still had another fecal sample out for testing so the contact precautions were back on until anything was ruled out so I wasn't allowed to leave the room and everyone in it had to glove, gown and mask – including Craig. I really had no expectations of going home that night.

Then all of the sudden at about 3pm a resident and an intern came into my room and said that they were going to be sending you home. The fecal matter tests came back negative so the precautions signs outside my door were taken down and everyone ripped off their blue paper gowns. They explained that since my counts were back to normal, since my feveral pattern had subsided and since I had no other symptoms that it was safe to say that my body had recovered from the high-dose chemo and stem cell transplant.

I don't remember what I said back but the doctors looked at me and said: "Does that sound good? Would you prefer to leave tonight?"

I just didn't get it.

"So I can go home home, not the hotel? I can eat what I want, drink what I want, go out in public?"

Craig said that as I spoke my voice was so shaky and he could visibly see my chin trembling. He had to keep stepping in to ask questions and talk for me.

They told me that I still should avoid big crowds and stay away from anyone who is visibly sick as I continue to recover. Dr. Cooper and his nurse Erin who saw me later told me that my only restrictions were "no sushi and no digging in the dirt for a while" and that they'd see me on Tuesday.

The doctors told me that they'd write up my discharge instructions and write me a prescription for Acyclovair, the antibiotic I'll continue to take three times a day for six months. As my platelet count was borderline they also wanted to transfuse me with one more unit of platelets before I left just to be on the safe side. They also scheduled me to return to the clinic on Sunday for more bloodwork and any other transfusions as needed. Then again on Tuesday for the same, a breathing treatment to prevent PCP pneumonia and to discuss the rest of the follow-up care.

They left and Craig says to me: "You looked like you were going to cry."

I responded by starting to cry. I was just so overwhelmingly relieved and completely stunned that I made it through. It felt exactly like sky diving when I was 18 though instead of the amazing adrenalin of that free fall, this had been a free fall from hell filled with fear, sadness, confusion and hurt. I jumped out of the plane at 13,500 feet with a little Australian man attached to my back. we were free falling through the sky at 120 miles an hour for one solid minute of pure energy rush. Then together we pulled the cord, the parachute released and the abrupt change in motion was so harsh. I remember the harness around my upper thighs locking so tight against me and our bodies wrenching with the force of the parachute stopping our free fall as it felt we being yanked upward.

When I heard that this proverbial free fall was over, everything around me stopped just as suddenly. It was the abruptness that was the strange part. All of the sudden it was over. I was going from not being able to leave a room or to move my bowels without telling anyone to complete freedom to do whatever my body could handle and complete release to go and start the lifetime healing process. I can only hope that what's to come will be just as beautiful as the slow, gentle, breathtaking parachute descent I took from the sky to a field of grass 10 years ago.

I did not have much to say on the ride home. I was just so happy to have the windows down and the breeze blowing in. We stopped at our favorite pizza place for the Little City special - chicken, melted leeks and artichokes galore. As we waited for my prescription to be filled, we ate it in the car with the windows rolled down. We parked it by a nearby restaurant with a patio that had a guy outside singing and playing guitar. We savored the pizza and listened as he sang U2's "It's A Beautiful Day" agreeing with every sweet lyric.

Then it was home where I inhaled the familiar scents, took a long hot shower to get rid of that lingering hospital film and climbed into bed spreading out in the glorious soft sheets that don't scratch and pillows that are not blue and rubber.

Here I am 11 hours of sleep later with a much clearer head and holding a lot of pride. Things aren't perfect. I'm still very weak, sore, bruised and battered with a persistent cough and chest tightness but I'm on the sweet descent. I'm going to take things slowly and try to decompress and grapple with everything that just happened. I know this will take a long time, but I am so excited for so many good things to come. Most immediately I look forward to a Memorial Day weekend of sun, fresh air, parades and barbecues.

Smiling and at peace.

Friday, May 28, 2010

Day +9

Yesterday I had an all-star cast of caregivers which is exactly what I needed. I had the same nurse for 12 hours and her energy never faded throughout the shift. She was efficient, friendly, and genuinely happy. She was always smiling and humming anytime she was in the room. It was exactly what I needed as I was very tired and lethargic as it's been many, many days since a good night's sleep (as I write at 4 a.m. ...), but her energy was contagious. It's all about attitude. Another nurse who I had my first day was back to help out with my transfusion and I love talking to her because she has been working with stem cell transplant patients forever and is incredibly knowledgeable about it all. She helped me more fully understand what is happening in my body at this point in the process. One of my favorite PCAs was back that always calls me Miss Diamond. And, even the woman that transported me to a CT Scan was so talkative and friendly.

It was a busy morning. I received another transfusion of platelets and a repletion of magnesium. They also drew yet another set of blood cultures because of a fever the night before. Again it took three nurses to pull from my arm vein. Now it's just comical. I just look away and focus deeply on my breathing.

Unfortunately I still had a few fevers. I'm hovering around 100 and got up to 101.3 at about 5pm. All the blood cultures keep coming back negative for any viral or bacterial infection, which is good. Dr. Cooper ordered a CT Scan yesterday to take a closer look at my chest and upper abdomen to see if there is anything going on there as I've had persistent dry coughing spasms especially at night and in the morning, but that's been happening for weeks. Preliminary results showed nothing that would be causing a fever and revealed that my lungs look nice and clear – also very assuring.

My white blood cells are just about fully recovered now so they are thinking that if I did have an infection, my body would be strong enough to fight it. Therefore they have stopped the IV antibiotics and I am just continuing on the oral ones –some of which I will for six months as part of the protocol.

Rather than an infection, what we are now looking at as the fever cause is an inflammatory response happening in my body due to all the action in my bone marrow and all of these young, vibrant cells taking over the tired, weak chemo-compromised ones. Sometimes as the cells graft together the body can mistake the new ones as invaders and react causing a fever. This is not uncommon in transplant patients.

As of yesterday evening's talk with Dr. Cooper, after the next fever we're going to try a course of steroids (prednisone) to calm my body down and reduce the flare-ups. If the fevers go away after that then the mystery is solved and I'm free to go home. I believe the steroids are a few day course so I don't expect to be going anywhere anytime soon ... .

With my contact precautions now lifted Craig and I were able to spend some time in the healing garden yesterday which was nice – and we can now hug instead of fist pump which is double nice. We spent the afternoon watching funny movies and doing a little napping.

Unfortunately I'm still hooked up to the IV pole for regular saline maintenance fluids. It's certainly getting old being tethered for nearly a week now and I'm going to ask the resident this morning if we can discontinue that too since I'm having no problem eating and drinking. If it means I have to drink 18 pitchers of water a day I'll do it if it means I don't have to lug this thing around with me. My taste is certainly not fully recovered, but it's much improved and therefore so is my appetite. I'm told it could take weeks for my tongue to react normally again to flavors.

It's really not so bad here though. The room is so spacious, I have my own bathroom, shower, and fridge, and I have a couch and a recliner so I don't have to be in bed all of the time. What I love most is the view I lucked out with. I can see all the way to Sleeping Giant mountain with so many lush, green trees and a beautiful red rock formation to marvel at. Last night I could see the bright lights of a night game in a baseball stadium and that made me smile. The night before I witnessed an awesome lightning display – full sky to mountain strikes. I've never seen a thunderstorm so vivid. My view is to the west so I've caught breathtaking sunsets every single night.

I'm happy to have a new plan of action and hoping that these steroids do the trick and I can bust out and take a long, deep sleep in my own bed – after a good tennis ball fetch session with Sammy of course.

Thursday, May 27, 2010

Be Your Own Advocate

After six days as an inpatient and a total of over a month spent in the hospital this spring alone, I can't express how much I appreciate a good nurse – and maybe even more so – a good PCA. But even with the best care, it's so important for anyone who has to go through this to know how vital it is to be your own advocate and to have a full understanding of the care that you are supposed to receiving, the drugs you are supposed to be getting, when you are supposed to be getting them, and keeping track of your symptoms. You must pay attention.

I consider myself to be a pretty intelligent person and the journalist in me prompts lots of question asking and fact gathering. Every single day I've been here my heart aches for cancer patients for which English is their second language or who just can't wrap their head around all the medical terms or who just zone out and leave it to the nurses and doctors to handle. I can empathize with why other patients may be like that ... they don't want to know what's going on, they just want to close their eyes and get through it because it can be really, really overwhelming, but that does not work for my personality. And I'd venture to say that that's the case for most other young adults in my situation. I have caught so many near mistakes and told so many nurses how to do things that it's quite scary.

To be fair, I realize that no one knows my individual medical case nor my body better than I do and I've been watching people treat it and care for it for more than a year now. But I did not go to nursing school and I don't deal with patients all day every day. I do not comprehend how those that do still cannot draw blood, work on a cancer floor and can't change my port dressing or don't know tricks to get blood from my port if it is being finicky. I just spent 20 minutes with the nurse who couldn't get more than a little blood. She had no idea how to problem solve. I told her that when it happened in the clinic once they had me breathe, cough, lie very far back, put my arm up and I walked her through each of those things to try.

This is the longest stretch that I've ever been in the hospital and unlike just getting chemo which requires action for only about five hours of the day, I require a lot more work and obviously the lazy nurses do not like that. I had contact precautions instituted meaning that anyone that comes in needs to put on a gown, gloves and a mask first. The number of people checking on me reduced dramatically. I never even met my evening PCA and my night one has checked my vital signs once despite the fact that they are supposed to be monitoring my incessant fevers so closely. When I ask the nurse again if he would be coming around to check I hear that he is "rounding" ... well I am "burning up."

The dinner delivery person apparently didn't want to deal with putting those precautions on either. After 90 minutes passed from the time of my order and my food still had not come I called up front and the nurse dispatcher person said she would check if it was in the communal kitchen area. Didn't hear back for another half hour. Called again. She said she was sending my PCA to go look. Finally he comes in with the tray which was salmon and rice and says he found it in the nourishment room. I had been delivered at 6pm and therefore had been sitting there at room temperature for two hours. He told me that he microwaved it for me so hopefully it's hot enough. Are you fucking kidding me, I thought? I'm neutropenic, on a low-bacteria diet and I'm going to eat a tray of food that has been sitting out for two hours? And you can't tell me that no one ever walked by that tray. The "not my patient" or "not my job" attitude is ridiculous. So I ended up with pasta on a styrofoam plate at 9pm.

Some nurses will leave wrappers and caps from syringes and bloodied alcohol wipes on the bed and I'll find them in the sheets. The other day I had to wait hours for someone to come and change my bedding. I was so tired and wanted to take a nap but my sheet was covered in blood from the massacre that went down when – God forbid – they had to take blood from my arm.

I had to force one nurse to go look back at the orders when she did not believe me that it is protocol to give Tylenol and Benadryl before a blood transfusion. After she checked the computer she came back in with a Bendaryl pill for me and didn't say a word. I've broken out in hives from platelets every time even with Benadryl beforehand and had to get more during ... can you imagine what would happen if I didn't speak up?

And the absolute worst is the "shift change void." If you need something between 6:30 and 8 a.m., 2:30-4pm, or THE worst, 6:30-8pm, you're screwed. The worst was Tuesday night when at about 6:30 violent, shaking chills came on. Again, my sheets had not been changed and were sweat-soaked from breaking fevers the night before so I was sitting up on the couch wrapped in a blanket uncontrollably shaking, my teeth chattering. I knew a fever was coming on and I knew that Tylenol would stop the chills. This is what has been happening every four hours.

I called for the nurse, told the dispatcher person what was happening and she said, I quote: "Well, it's shift change ... I'll see what I can do." Half hour goes by, no one comes. The chills are more overtaking. I call again, say that I am spiking a fever, that I need Tylenol. Again, "It's changing of the guards" and some babble and as I continue to protest she just hangs up. Craig goes out in the hall to find someone, anyone. The nurse he talks to says "oh, I thought I took her vitals before ... ", mumbles something else, her phone rings, she takes the call and literally just walks away from him. Ninety minutes later my night nurse comes in and at this point I am in tears explaining to her what happened. She said she came in as soon as she arrived, which I knew was true as she is a fantastic nurse who I was lucky to have for several nights. My temperature had risen all the way to 103. She already had Tylenol in hand and gave it to me immediately. Apparently when the afternoon nurses are done, you are dead to them.

To counteract the frustrating caregivers, I have also had some phenomenal, phenomenal nurses and PCAs that have gone far above and beyond. They've been efficient, proactive, anticipate my needs and are right on top of things. You can tell that they generally care and that they are in this profession to help people.

And when you get a good nurse and PCA at the same time that work as a team, it's heaven. The past three nights my duo has been amazing. They would coordinate so that when the nurse came in to draw labs or to change over meds the PCA would come at the same time and do my vitals so that I wouldn't be woken up twice. They brought fresh ice water without me having to ask and checked if my hat was full every single time. I tell you there is nothing worse than overflowing your own pungent antibiotic laden urine over and over until they decide to come empty the hat that I have to pee in every time.

It makes all the difference in the world when you are treated with respect and kindness, when the nurse walks you through the care plan for their shift, when they tell you what is happening with your bloodwork, what you can expect to happen next, when they check in just to see if you might need anything, and when they spend the time to talk to you, show compassion, get to know you. Compassion is the big thing and you know if they have it or not within the first 15 minutes. Some are just going through the motions but some make it their mission every shift to be sure that you are as comfortable and as cared for as possible because they understand what you are going through is pretty close to hell. A smile, laugh and a gentle touch on the arm go a long, long, long way.

I have also been more than impressed with the oncologists, hematologists, residents, fellows and interns working on my case. They are all at once extremely intelligent and extremely caring and do such a good job at making something as abstract as a stem cell transplant understandable.

I suppose that there are individuals who are outstanding, so-so, and terrible at their jobs in every profession, but in this one it's lives, not printer cartridges that are at stake. Even in my most frustrated moments I maintain my devotion to the "kill 'em with kindness" method. There are ways to stand up for yourself without snipping and bitching at people. And the reality is that like them or not, that is the person that is going to be caring for you often times for the next 12 hours and when you need something you don't want to be the patient they ignore. Plus, they're the one wielding the needle.

When I'm appalled at a transporter pushing me on a stretcher to x-ray and groaning about how long of a day it's been for him or a nurse telling me how eager she is to get out in two hours I constantly go back to the Plato quote: "Be kind, for everyone you meet is fighting a hard battle," but sometimes it's hard to swallow people's insensitiveness. I'm pretty sure that at this moment in my life my battle is probably at least on par with whatever one they are fighting that's making them drag their feet and moan in gloom.

Wednesday, May 26, 2010

Day +1 to Day +8 Recovery

It's been quite a ride. And I thought that I've already been on all the scary rides at the amusement park over this past year. Lots of ups and downs. Lots of gut checks. Lots of spins, confusion, weakness, chills, sweats, even some diarrhea and puking. It's actually been quite like continuous long days at Six Flags after too many spicy fries and soft serve cones combined with centrifugal rides that make you stick to the wall while the floor drops out from under you.

Last Thursday we moved down to New Haven into the hotel suite. It's pretty tight quarters but has a kitchen with all the amenities, a living area, and a super comfortable queen size bed. The night before I was literally on hands and knees trying to pack a suitcase with 15 days worth of things that I would need but so far somehow I didn't seem to miss anything. My mom had bought me a huge pill box with openings for morning, evening and bedtime for each day and counted out all the antibiotics and anti-nausea pills that I would need to be taking. The antibiotics are like horse pills and were especially a bear to get down due to my incredibly uncomfortable mouth. By Thursday I had no taste buds and my entire tongue and mouth was coated in a white film and it felt like I had a tube sock stuck in there. Never mind the nausea and gag reflexes kicking in when trying to take them, but I'd gotten them all down, knowing that if I couldn't get them down that I would have to be admitted as an inpatient and I was trying to avoid that at all costs.

Thursday's trip into the clinic went fine. Then it was the same drill on Friday. I got my blood work done then received a Neupogen shot to start boosting my white blood cells and two bags of fluids to keep me hydrated and keep my blood pressure up. On Friday we were there for several hours but it was beautiful out and Craig and I played cards out in the meditation garden until my IV pump ran out of battery and we had to head back in. Afterward I was feeling pretty strong. We went on a drive through New Haven, rented some movies for the week, and went to the beach where we laid out on a blanket and read in the evening sun. Back at the hotel my appetite was feeling better than it had in days so I had some Annie's mac and cheese with spinach and chicken sausage. We curled up to watch a movie and I was feeling "good" (a relative term, of course).

Then the clock struck midnight and all hell broke lose. I could literally feel my upper and lower intestines throbbing in pain and it was bathroom trip after bathroom trip doubled over with horrible diarrhea. They told me the Melaphan chemo drug would cause this but I never imagined it to be that bad. I was up all night transferring from fetal position on the bed to hunched on the toilet. By 8am when we had to head to the clinic I was incredibly weak, still in a lot of pain, and unaware if things were going to act up again. Every movement was so cautious, Craig comparing me to a 97-year-old woman and that's really what I felt like.

We rolled in and they tried to put me in one of the chemo pods but I told them that I needed a room with my own bathroom and explained the night. I was sent t0 the far end of the hall. Being a Saturday it was bare bones staff and Craig and I sat in there for nearly 45 minutes before anyone came to get me started, check on me or put a pillowcase on the pillow. Finally our call bell was answered and we came to realize that this would just be the day of hellish care. Note to self: try not to feel awful on the weekend shifts. When the nurse finally came I told her that I was having wicked back and stomach pain and about the night 'o diarrhea. Because of that she called the on-call fellow - also not much help. Then luckily Dr. Cooper swept in.

At this point I was downright weapy, all teary-eyed and choked up because I just felt so, so shitty. I told him that I'm usually really tough and I was just feeling awful. I couldn't help the hot tears from streaming down my face and had to keep wiping them away with a tissue. I was running a temp of 100.1 and because it was still so early in the morning he said it was safe to assume that it would only rise throughout the day and made the decision to admit me and get me on IV antibiotics. Though I certainly did not want to be back in the hospital again, I knew it was the best, and the safest thing to bring out the heavy antibiotic guns and to be monitored at all times.

So the preparation for admission ensued. While in the clinic they took blood cultures to test for any bacterial infections. Most could be pulled from my port but some have to come from a peripheral vein in my arm in case the infection was in my port itself. This took two nurses on their knees, three vein pokes and an arm that was about to explode they tied the tunicate so tight and had to leave it on so long because my vein was only dribbling. I was just so tired that it was all I could do to breathe deeply as my eyes continued to well.

I was then admitted to the solid tumors floor as that was the first bed to open up. There I received two units of red blood cells and four units of platelets. My nurse was nothing short of a nightmare. I've had wonderful, wonderful nurses, mediocre and some doozies but never one like this. I was so out of it, but luckily coherent and smart enough to know to advocate for myself. It was one thing after another after another that just wasn't going right with her. Dr. Cooper came up to see me and when I got all teary and told him that she wouldn't hook me up to fluids flippantly saying that I didn't need them and that I had to convince her to recheck the orders to see that in fact I do need Benadryl before platelets. Hearing all of this he stood up chest puffed out like an ape and he ripped his paper gown off like Clark Kent revealing his Superman undersuit and went into the hall to find her. I'm pretty sure he reamed her a new one because when she came back later she asked me: "What was that doctor's name?" The next morning he made sure that I was transferred to the 11th floor which is devoted to blood cancers and I've been here ever since.

I really wish that I was up to writing over this past week but I just could not get the strength. And anytime I got close to it someone would come in to put me through something. It's not easy to keep a creative flow going here. But I guess it's also just a testament to how awful, awful I was feeling. Looking back on Sunday through today it's all a big blur. Maybe it's better to remember it that way. It's been a blur of all different antibiotics throughout the day and night by mouth and by drip, daily Neupogen shots that burn like hell, blood transfusions, magnesium and potassium transfusions. A blur of constant vitals checks, blood draws, chest x-rays, blood cultures, physical exams and the dreary eyed desire for an uninterrupted night's sleep. A physical blur of throat sore pain, vomiting, diarrhea, aches, and extreme weakness.

The worst of all has been the fevers which have continued since I was admitted on Saturday. Anywhere from 100.1 up to 103.2, never going below 99. Each would start with violent, shaking, teeth chattering chills. Despite wrapping myself in several blankets I could not warm up and could not stop shaking. They would give me Tylenol and all I could do was curl up in bed and ride out the chills until the fever broke and I was soaked in sweat. The hunt has been for the cause of the fevers to make sure I don't have any type of bacterial or viral infection. This is why they've been drawing so many blood cultures and I also have had to endure swabs up every orifice. So far, everything continues to come back negative.

I've never been bored. Not for a second. In fact I wish that I had more time to read or sleep or catch up on miscellaneous projects but again the energy or gusto was completely zapped. I've had either my parents or Craig here for a few hours each day with Craig coming for a couple hours after work each evening before he goes back to sleep at the hotel and commute the hour to work. We've watched movies together and my parents even brought bright garden streamers to decorate the room. But often it has been them watching me half-sleep.

All started to turn around on Tuesday and has been doing so turner for the brighter with each day. Until I come out of neutropenia and I stop having these fevers they will keep me here. What's helpful to keep in mind is that I am here to heal, not here to receive more toxic drugs. This means that when I do get released it'll be just to continue along the recovery path. This time once I start to feel close to myself again it won't mean that it's time for more chemo. It'll mean that I can keep the healing going.

Sunday, May 23, 2010

Quick Update

I will write in more detail, hopefully soon. I just have not had the energy as of yet.

The stem cell transplant (day 0) went smoothly and I have been recovering since. Not unexpected, I was running a fever in the clinic on Friday and was admitted as an inpatient at Smilow. I've received some blood transfusions and have been getting Neupogen shots every day to help my blood counts recover later this week.

I am very exhausted, not able to eat much, and not able to have visitors besides my immediate caregivers (Craig and the 'rents) or leave the room. My blood counts are nonexistent so so is my pep. However, I am very positive and hopeful for a full recovery. It is anticipated that I'll start to make a turn around on Wednesday (Day +8). Until then, I'm digging deeper and deeper and keeping my focus on a healthy, new start.

Thanks for all the positive vibes and support.

Friday, May 21, 2010

Day 0: The Making of Karin 2.0

I had finally reached the proverbial summit. I had expected that the view at the top would be crisp and clear, peaceful and serene. Instead the view was confusing, intimidating and surreal as I was so tired and foggy headed from all the chemo.

I had come so far to this point: Day 0, my mollecular rebirth. We'd been talking about an autologous stem cell transplant for more than a year. It was always thrown in as part of conversations with Dr. Dailey to assure me that there were back-up methods should the ABVD chemo treatments disappoint. And that even those who go through high-dose chemo and a stem cell transplant have a strong survival rate. A year ago the idea of a stem cell transplant was to me a far-off scientific abstraction, but a great insurance policy, another safety net that would be at my disposable in the very minimal chance that the aggressive 12 infusions of ABVD didn't cut it.

Now I am resting in that stem cell transplant safety net like a trapeze artist hoping that it will hold me firmly and gently and that I'll never fall through. There have been brief discussions about further options - an allogenic stem cell transplant with bone marrow from a donor - if I somehow relapse. But that will not happen.

My mother and sister came with me to the cancer clinic for my rebirth day. There was a bit more pomp and circumstance this time around as it was a full and legit stem cell transplant unlike the "mini" I had with DI-CEP. Kathryn, my coordinator, brought me a bag of birthday goodies including a Yale baseball cap and Blockbuster gift cards. My nursing duo of Ann Marie and Chona whom had been administering my high-dose chemo all week were the ones there to celebrate the re-infusion with me.

I was at once very tired and very hopeful. I lay in the hospital bed with my mother and sister in chairs beside me and the nurse from the stem cell bank arrived with my blue Igloo cooler of 6.5 million cells. The frozen cells were warmed and the bag was hung.

Nurse Chona clapped and cheered as they started to descend into my port saying: "They're swimming. They're swimming."

I asked again how they know where to go and she compared the stem cells to sea turtles. Mother sea turtles lay their eggs on the beach and when the baby turtles hatch it's just in their DNA to know which way to crawl away. I closed my eyes and thought of a line of baby turtles hobbling toward the ocean and willed my blood cells to do the same.

I sucked on a ginger lollipop and ice chips to calm the itching sensation in my throat from the preservative, but other than that, had no negative reaction. The Benadryl and Tylenol I received beforehand put me in a sleepy state.

Pandora radio was playing on my iPhone and a most apropos James Taylor song came on called "One Morning in May" in which the chorus kept repeating "Good Morning, Good Morning" like it was my stem cells reuniting with the rest of me and sending us salutations for a good start to the day. Then came George Harrison's "Here Comes the Sun," which seems to be a recurring theme during all of this. Then my cell phone rang when the stem cells were just inches from reaching my chest and it was Craig. So he was there by phone for the big cellular reunion. We marveled at the coincidences.

I left to use the bathroom and came out to find my mom and sister all teary and crying – happy tears. I thought that I would have done a lot of crying and would have been more emotional, but as my mom described me she said I just looked at peace. I did feel at peace and felt a tremendous amount of hope.

Thursday, May 20, 2010

Day -1: Melphalan

This past Monday, it was early to rise with another morning appointment down at Smilow. The last day of BEAM chemo. It was only one drug – one of the high-dose drugs – but I was told that it would go smoothly albeit the fiery diarrhea that would set in days later.

Eerily similar to when I arrived for my 12th and last ABVD chemotherapy infusion, my port decided to act up. It would flush the saline they always send through it without a problem, but it would not give back any blood. One-way only. I had flashbacks to being back in the Avon Cancer Center with the nurse having me turn every which way to no avail until they finally had to stick me in the arm to get my blood and sated me by drawing a smiley face on the bandage.

I was very tired from all the chemo and this was really the last thing that I wanted to deal with, but it happens. Sometimes fibers get caught up in the port-a-cath and can cause a blockage of some sort that doesn’t allow for a clean blood return. So the charade began. My nurse laid me all the way back, half-way back, turned me on my side, put my right arm over my head, had me cough, put my left arm up. Still nothing but a few bloody dribbles until reinforcements were called in and Chona, my absolute favorite little Philipino nurse, was able to get the job done.

The blood work was sent and the chemo began … two hours of dripping. To my surprise, my blood work showed that my hematocrit had already dropped down to 23 and I would need an infusion of red blood cells. So much for a short clinic trip. We’ve certainly learned to expect the unexpected and always plan to be there for much longer than anticipated. That’s why my “activity bag” is always packed tight. The anemia setting in explained some of my tiredness, but I had just chalked it up to the chemo effects – I’m sure it’s a combination.

Blood transfusions always require prophylactic Tylenol and Benadryl, which I don’t do well with at all, so I was in and out of a loopy state while Craig tried to keep me entertained with funny online videos and by taking on the huge task of organizing our address book.

A visit by PCA Wade and another of his magic card tricks made me smile. And so did the caring of my nurse team – Ann Marie and Chona. They’d been working with me consistently since the first day of BEAM, and it was nice to have the continuity of care. They’re compassionate, attentive and efficient … and I like how Chona calls me ‘honey’ and makes a pouty face when she knows she has to do something to me that I’m not going to like. She’s feisty, energetic and positive. Something you really come to appreciate in a caregiver.

Eight hours later we were released. Chemo no more.

Day - 3 and Day -2 (Etoposide and Cytarabine x2)

The idea of a nurse showing up to administer drugs became old hat very quickly. Even Sammy did well with it. She didn’t give any of the four nurses that we had over any trouble. Just some curious sniffing then she let them be. She was also dainty and respectful around my IV line so there wasn’t concern that a quick jolt would rip the needle out of my chest.

Last Saturday morning (Day -3) Chatty was back, but a little quieter after she had already divulged her life story the day before. In fairness, she was very nice, just a little – different. And that’s what makes the world go round, right? I especially liked her on this morning because she allowed me to receive my chemo out under the sun umbrella on my front porch where I played music and caught up on things. She perched herself inside watching me through the dining room windows and would occasionally come over for a chat and a vitals check. We shared some laughs as Craig bounced around doing yardwork.

I felt fine from the chemo. Craig, Sammy and I took a nice hike further enjoying the summer-like weather and even made a trip to the ol’ Home Depot. I did some yoga stretches then indulged in a cat nap.

By 7pm that night she was back and all worked out perfectly as Craig and I had rented “The Blindside.” Well, Chatty had never seen this and was delighted. As much as we offered for her to come sit on the couch and watch it with us, she sat in the kitchen “so she could pretend to work on her paperwork” though she chimed in with us throughout the movie, eyes glued. She told us what a bad procrastinator she is and we apologized for taking her away from her work. All-in-all it was a good Saturday night.

Sunday (Day -2) came and it meant not only the last day of home chemo, but also that I’d only be receiving one drug twice that day, the Cytarabine. This cut the drug dripping time from 4 to 1 ½ hours, which was a great way to end the week. The short time periods gave us a longer window of freedom. This was good because the exhaustion of nighttime/morningtime chemo was really starting to take its toll and my body felt inflated like a cartoon character from all the fluids – sausage legs, cankles and all.

We did a shorter walk; this time on the flat grounds of the neighborhood streets as my joints were really starting to tighten and swell, but I knew that it was important to move my body every day that I possibly could. The doctors and nurses … and Ethan Zohn (Survivor winner and fellow stem cell warrior)… had told me that the more I move, the better, and I’m taking that to heart.

I was thrilled that I had the strength and that the timing worked for Craig and me to make it to celebrate my former roommate/wonderful friend Laura’s UHa graduation with her Doctorate in Clinical Psychology with a fantastic Elbow Room lunch in our old West Hartford Center stomping grounds. Her family had flown up from Miami and other close friends had made the flights and drives. It was great to catch up and to witness such a much-deserved accomplishment for her.

But before the chemo clock struck we had to whisk out of there to be back to meet the last visiting nurse. Craig had to run some errands so it was just her and me. As a precaution Craig and I set up a code text to send if things got uncomfortable.

Well, it was quite the opposite. I was enthralled by her. She was in her thirties, fiery red wavy hair and lots of freckles. She was petite and had the build of a modern dancer. However, she hobbled around locked tight in a knee brace from recent ACL surgery. She told me how she just couldn’t stand working so she bribed people to drive her to her home visits. I could relate. We had an immediate rapport and a very comfortable couple of hours together. She recounted some stories of her work as a pediatric oncology nurse and shared some woes about also being denied short-term disability pay because of a merger loophole. We talked about our iPhones and about the decorations in our houses then we settled in to watch Trump’s Miss USA contest – always entertaining – remarking at the choices of dresses and the oodles of makeup. I was maybe even a little bit sad when I heard the IV pump beep meaning that her company would be ending.

But that faded quickly when it set in that I had just one more final day of the BEAM regimen and that it would hopefully conclude chemotherapy for the rest. of. my. life.

Saturday, May 15, 2010

Day -4 (Etoposide and Cytarabine x2)

One positive about having cancer. It can get you out of a speeding ticket.

On Friday again it was another very early trek to New Haven and I was again a grumpy girl not wanting to drag myself back for more chemo after I had just finished it up at 11pm the night before. So I pushed it to the last second until Craig was able to get me in the car and out the door.

As we were a bit behind, Craig may have been going just a bit over the speed limit and out ripped a police car, lights flashing behind us. We both looked at each other and knew we were thinking the same thing.

"Take off your bandana," Craig said, pointing to the navy kerchief I had tied over my bald head. Really, who can give a ticket to a man driving a bald woman to a chemo appointment? We thought it was worth a shot so I pulled it off revealing my shiny, freckled hairless head and even better exposing my droopy, swollen eyes and very sparse showing of eyebrow hairs or eyelashes ... not a pleasant site at 6:30 a.m.

The officer came up to Craig's window, requested to see his driver's license and asked if he was on his way to work. He explained that no, he was taking his wife to Yale's cancer center and I bent over so he could see me in full and piped in that I was on my way to chemo.

As predicted, he took one look at me, didn't even take the driver's license and just said: "The roads are wet. Take it slow," and let us drive away. Cops do have hearts.

We pulled away laughing hysterically at the situation and the fringe benefits of cancer patienthood.

After the little pull-over blip, we got to Smilow in plenty of time. And added bonus, it was massage day in the clinic. I was whisked away by a sultry accented woman into a massage room complete with music and a real massage table and a view of the meditation garden. My IV pole and dripping chemo came with me of course, but it was a fantastic half-hour respite.

I returned to Craig and the chemo recliner and we caught up on e-mails, watched funny videos and flipped through mags and books ... the usual routine. Everything went smoothly.

After some errands and a visit to a Yale haunt "The Educated Burgher" courtesy of some thoughtful friends, we were back home with time for a little nap before the night nurse came to the house for the second 4-hour set of chemo.

This nurse was quite a bit more chatty than the first night ... unsolicited chatty that is. I heard all about her heavily drinking father, her cluttered house, her son's cars all over the yard, her daughter's boyfriend that she disapproves of, her cats, her sunroom and the grill that exploded in it. Really fascinating material for someone who just wanted to zone out, but what are you going to do? No matter how much I pretended to be into the TV or computer or book, the verbal diarrhea continued to flow. But at least she was nice and Craig and I were able to just give each other knowing glances and elbow jabs to get through it. Eventually we just passed out on the couch until the final drug beeped that it was done.

It was time for bed to be up for Chatty Cathy's arrival the next morning at 8 a.m.

Day -5 (Etoposide and Cytarbine x2)

My mom and I made the early morning over one-hour trek to Yale to arrive for my 7:30am appointment. I was quite grumpy in the morning and pushed leaving to the last possible minute. My mom had stayed over the night before so she didn't have to wake up with the roosters to get to my house and pick me up in time. Reminiscent of those days when I'd roll over and whine not wanting to go to middle school, she got my butt out of bed and into the car.
We made it on time and I was hooked up with chemo dripping before we knew it. I've received the Etoposide before, both with the pediatric ICE regimen as well as the DI-CEP, so I knew that I could tolerate it without a problem. The Cytarabine was new to me, but went down fine as well. In total the drugs dripped for about three hours after I received the usual steroids and powerful anti-nausea meds (Zofran is amazing.)

I dozed off under one of the heated blankets with the butt warmer cranking on the heated chemo recliner and woke up to gray haired, furrow browed older man asking my mom and I if we would like him to paint for us. What a pleasant thing to wake up to, I thought.

He told us about his life. How he used to be a potter for 25 years until the heavy lifting and tedium of the kiln got to be too much for him in his older age. Before that he worked at the BBC in London for 22 years. At the age of 22 he approached them and created his own position in the company. He was nothing short of fascinating.

He gave me the choice of a waterfall, beach scene, a cliff, a long rocky walk with a barn and other natural landscapes. I told him that I loved the beach so we decided on a deserted beach scene with a tree in the foreground and a little row boat tied up. His voice was so gentle and soothing – slow with a fading British accent. He walked my mom and I through his painting process as he laid out his brushes and the four colors he would use, drew the horizon line and then proceeded to magically turn a blank piece of watercolor paper into a magnificent work of art in just 20 minutes. We learned how to spin the brush bristles to make for a perfect tool to draw the straight lines of the branches and the row boat. We learned how to make clouds in the sky by soaking up the colors with a sponge. And now I have an original signed piece of art from a very talented man caring enough to volunteer his time to paint for those stuck passing the time with an IV pole.

We drove back home and both my mom and I crashed for a long nap and then it was time for more chemo. The visiting nurse showed up at the house around 7pm and the whole shebang was repeated. I was quite wary about what it would be like to have a stranger in our house and to bring the "cancer patient world" into my home sanctuary, but I tell you, it is much preferred over being in the hospital or the clinic. I was able to curl up on my own couch with Sammy at my feet, watch DVRed TV, hang with Craig, and use my own bathroom. Once I was set up the nurse really kept to herself. She played some Jeopardy with us but otherwise just did her paperwork and caught up on her own things. This was good as Craig, Sammy and I all fell asleep on the couch while the final hour-long bag dripped ... we weren't very entertaining hosts, but she told us to get comfortable!

All was done a little after 11 p.m. and it was certainly glorious to be able to just walk up the stairs to my own bed rather than get back into the car for a long drive home – or worse, face a night trying to sleep in the hospital with all the beeping machines and constant vitals checks.

Thursday, May 13, 2010

Day -6 BCNU (Carmustine)

The first day of the high-dose chemo regimen went fairly smoothly. This was the worst drug in the regimen so it's assuring that what happened yesterday will be the worst reaction of all.

Craig and I arrived at the clinic and after having my port accessed, blood work, steroids and anti-nausea drugs, and a lot of waiting for the pharmacy delivery, it was time for the BCNU also known as Carmustine, the "B" in the BEAM regimen. The drug came in a glass bottle – something I've never seen before. Usually the chemo drugs come in the same plastic bags that normal IV fluids do. However, I guess this high-dose drug is pretty harsh and would cause a reaction with the plastic. I imagine it eating it away like burning acid would. So the nurse hung the glass bottle upside down on the IV pole and had to use a special non-plastic tubing to run it from the bottle into my port.

The drug was to run over 90 minutes, but somehow we were there for about 7 hours after all was said and done. This is because a) things always take longer than estimated and b) we had to take a little break.

About 45 minutes into the drug my heart started pounding very quickly and violently and I was feeling very flush. I called in the nurse and she and the PCA took my vitals. We all looked at the numbers on the machine. No one really said anything and she quickly turned to the IV pump pushing the drug and shut it down. Turns out my pulse was way over normal and my blood pressure had dropped to 76/45. A normal person runs 120/80. My normal even when I am healthy is lower than most, about 95/60. My temp was running at 99.1 and the nurse said she could hear my heart pounding when she was listening to my lungs through her stethoscope. Because my blood pressure was so low, my heart was working extra hard to try to compensate.

After some calls out to my APRN, it was decided to keep me off it for about 45 minutes to let my body calm down. I'm told that they've never really seen that reaction before so I guess I found a way to keep it exciting for them. After a time out and some Full House and America's Funniest Videos on the tube, things did settle back to normal and they let the rest of the Carmustine drip. Because the drug is alcohol based, most patients experience a severe headache and brain burning at the end of the infusion, but I managed to escape that. Instead, I had a lot of achiness and pain in my jaws and teeth – again, strange. I looked exactly like the chemo monster on the shirt I was wearing (see the impression to the left; I didn't have to tweak my face too much to nail it). But after some Tylenol and a little nap, the pain went away and never came back again. I was then released.

At home I took a solid two hour nap then my parents and sister arrived and we took my mom out for a birthday dinner at Plan B, the delicious burger joint in Simsbury. Though I don't eat burgers anymore, the cobb salad and the blueberry cheesecake in a mason jar were fantastic. It was nice to be out of the house and I'm trying to do that as much as possible this week as I know I won't be able to do much of anything once all of this sets in.

I was off to bed and again out the door, with my mom as escort, at 6:15 this morning and here I am back at the clinic for more drugs.

Tuesday, May 11, 2010

Dead Man Walking

My mom called me today and I answered the phone: "Dead man walking" in my best impression of The Green Mile.

She reprimanded me and told me to "knock off that attitude" when I explained the impending doom enveloping me. I told her that I was only joking ... but that's only about 30% true. This is because tomorrow I go back in for the final round of high-dose chemo. The big guns: BEAM. It's not too far from the doom I imagine engulfs you when you know you're taking the long walk to the electric chair where your brain is about to be fried. Well, maybe that's a bit extreme. But, ugh, nonetheless. To be truthful I've got quite a bit of anxiety about it. And all of this is coming exactly one year after the Hodgkin's bomb was first dropped on me. May 8 - the day I got the call telling me that I had cancer. Looking back on it all is mind numbing.

This past week I've been on the mend from DI-CEP and gearing up for BEAM. Every day I've gone for a hike in the woods with Sammy. We're so lucky to have a trail entrance just 100 yards from our front door. The trek up the hill gets easier with each day, but I have by no means regained my stamina. My heart still races and my chest still tightens. I've been packing in the fruits and veggies and raw foods. I've been out and about running errands, doing administrative work, getting things squared away around the house, seeing friends. I suppose this is what you could call "nesting," like women do before they go in to have a baby. But in my case, it's me that's going to be turning into a helpless baby – one that even vomits and poops myself.

Although I am much transformed since just three weeks ago when DI-CEP wrapped up, I am still very tired all the time. My muscles are so tight and joints very achey. Yoga stretches help for about five minutes then everything shrivels tight again. I went in for a check-up and check-in with my Yale oncologist last Thursday and he thinks I've done "beautifully" with the recovery. I ache for those who don't bounce back like that because if this is "beautiful" then I'd hate to see what "ugly" would be.

All of my blood cell counts are perfectly normal as well as my electrolytes, proteins and other indicators that they look at. I told him how the numbness in my left lower leg has increased and how it aches when I get run down and how my stamina still isn't up to par. All expected, I'm told. Apparently the cisplatin that I received with DI-CEP is one hell of a drug that can increase neuropathy and will leave me pretty run down for a long time. He told me that it will come back eventually and unless I wanted to run a marathon or something then it won't be a problem long-term. I told him that I did want to and that I will. He agreed that it'll be doable, I just need to be patient. I do real well with that ... .

So, I got the green light and here we are ready for the final battle. Kathryn, my autologous stem cell transplant coordinator, gave me a wonderfully detailed calendar of all the treatments and appointments I'll have over the next month, as well as a detailed chart of all the antibiotics I'll need to be taking every day to prevent infection ... some for the next six months. She's booked the hotel room for us and called in all my prescriptions for anti-nausea meds, anti-anxiety meds, rinses to treat mouth sores, steroids, and all the other accoutrements I'll need to recover from this. Now, as I've written about before, it's just time for me to get my rear in gear. Kathryn tells me that I'm truly starting out ahead of the game with my strength and activity level. Everything else is in place. I just have to show up and take the punches – again. Easier said then done.

Here's a synopsis of the schedule:
Tomorrow, May 12 (Day -6): the hardest drug in the regimen will be administered in the clinic down at Yale's Smilow Cancer Center. As long as all goes well, I'll head home after. I'm told that I will have a burning in my brain and a wicked headache like a bad hangover for about an hour at the end of the infusion.

Thursday-Friday, May 13-14 (Day -5 and -4): chemo in the morning at the Yale cancer clinic for approx. four hours. Drive back home and will receive chemo again at about 6pm for another four hours administered by a nurse in my home ... very anxious about how this will go ... .
Saturday-Sunday, May 15-16 (Day -3 and -2): chemo twice a day at home with the visiting nurse.

Monday, May 17 (Day -1): second hardest drug in the regimen administered in the clinic down at Smilow.

Tuesday, May 18: This is my Day 0. The day that I will be "reborn." I'll receive the rest of my 6.5 million stem cells which will help my body recover from the debilitating chemo by replacing all the blood cells that it will have killed off.

Wednesday, May 19 (Day +1): Rest day at home. From this point on, I will need someone with me 24/7 in order to be treated as an outpatient. My husband, parents and sister have worked out a coverage schedule.

Thursday, May 20 (Day +2) through Wednesday, June 2 (Day +15): I will be living in a hotel suite located just five minutes from Yale's Smilow Cancer Center. Every single day I will have to go into the clinic for bloodwork, a physical exam, IV fluids, possible blood transfusions and/or electrolyte repletions, and a Neupogen shot to help my WBCs recover. I will not be allowed in any crowds or public places, can't be by construction sites or polluted areas, no restaurants, no restaurant food even if taken into the hotel ... all to keep me safe from picking up an infection as I will have absolutely no immune system. I am however allowed to take walks in fresh air open areas and this makes me happy.

Expected Side Effects:
- While I'm getting the chemo this week through Monday it's expected that I'll feel pretty good and am told that the more active I can be, the better. So, I will eat as much as I can and walk/yoga/exercise band as much as I can.

- Dr. Cooper tells me that Day +4 and Day +5 will be when the worst of the chemo effects start to settle in and it's going to be rough going until Day +12 when by blood cell counts will begin to recover.

- Every single nurse, fellow, resident and oncologist has told me the same truth/joke that I'm going to think I am passing gas, but that it is not going to be just gas so be ready for it. I will be packing plenty of undies in my suitcase. I just hope I don't poop myself in the cancer center.

- GI issues up the wazoo, literally. Possible nausea and vomiting.

- Extreme fatigue and weakness

- Mouth and throat sores which will make me feel like I am swallowing over a bunch of rocks.

- No appetite due to the nausea and mouth sores. I'm told that many patients don't eat for days at a time, but that as long as I am able to keep down liquids, they don't get concerned. If anything, I'll be able to eat soft things like eggs or potatoes, smoothies, milkshakes, etc. I'll be seeing a nutritionist at some point this week who will help to recommend things that should have on hand in the hotel.

It's all pretty intimidating. But I think that the most intimidating part is that my life is riding on this. I am hoping with all of my being and might that the chemo regimen works and that my stem cells are strong enough to salvage me once again. After this horrendous ride is over, I'm very much looking forward to having a brand new, cancer-free molecular makeup.

Like VP Biden said so eloquently about healthcare reform, this is a "Big F*&%ing Deal."


Tuesday, May 4, 2010

Community Is Underrated

I recently read the book One City: A Declaration of Interdependence by Ethan Nichtern, founder of The Interdependence Project. It was given to me by a friend that I greatly admire. The whole premise behind The Interdependence Project is that we are all connected. That everything we do, all the choices we make, effect someone or something else. As Nichtern writes: "Like the butterfly effect in chaos theory, the truth of interdependence states that no individual's action merely disappears into outer space without an effect. Each action creates the grounds for some situation that follows it."

This interdependence theory was brought to light and deep understanding for me this past Saturday in a way that I will never, ever forget. A group of our friends whom Craig has known since middle school and that I have been close with since high school put together a "Big Benefit Bash" to raise money for us to help offset the cost of the medical bills and living expenses piling up with just one paycheck to cover them. Though we resisted when we first heard of the benefit planning, they told us that they were doing this and that was that. What we experienced on Saturday was nothing short of beautiful.

Craig and I were so taken aback at the extreme generosity of our friends that planned the benefit, those that donated the raffle and silent auction items, the more than 2o0 people that showed up and the dozens more that couldn't be there but donated to the cause and were there in strong spirit. Being the "charity" is an odd thing to accept but what we came to realize is that all of these people - some we've known forever and some complete strangers - all wanted to help because they want to see me get better and to see Craig and me on the other end of this. That is a very powerful reality to digest and we are forever humbled and forever grateful.

There was face painting, a dunk tank, silent auction, raffle, door prize, pinata, lawn games, slews of pasta, salad and meatballs ... even an ice cream truck showed up for the occasion. Dozens of fellow teachers, students and their parents (current and past) from Craig's school were there. My former and former, former co-workers, our family members, family members of our friends, friends from way back and ones we've just met, strangers that we've never met but have been connected to our story through friends of friends or because they are avid blog readers. People were even donning "Karin's Cancer Warriors" t-shirts that another friend had made.

A woman came up to me and I couldn't place why I knew her. She looked me in the eyes and said her name and it all hit me at once - the effect of the entire day. I burst into choking tears telling her that I couldn't believe she was there and asking her how she even knew. She looked me right in the eyes and said: "It's because I love you, Karin." This is someone that I have not seen for maybe three years. Someone that I've really met in person only once or twice but whose organization's programs (The Artists Collective) I helped promote during my time at Hartford Magazine and the Greater Hartford Arts Council. I always enjoyed our phone conversations and e-mail exchanges and always felt a close connection with her. To find out that she felt the same way and that she thinks of me was so much to grasp.

This happened throughout the day as people from my past showed up in support. People close to my parents that have heard about me since I was a little kid, neighbors from our little village of Tariffville, some of my best friends - with babies in tow, parents of Craig's students who continually told me what an amazing teacher he is and how he has changed their children's lives. To hear the words of encouragement and see the faces behind all the messages and thoughtful gifts of support that have poured in since my diagnosis absolutely filled my chest with pure, unadulterated happiness and appreciation.

I kept looking around at all of these positive and selfless people and thinking, how could we be so lucky to have them all in our lives? I realized that this is what it's all about. You build these types of relationships over a lifetime by the way you live your own life. You are who you surround yourself with. Somehow something that we did had a positive effect on these people's lives as much as their actions had a positive effect on ours. Then that all just spirals into one big love fest within a community that we've built by the connections that we've made. It's all so much bigger than ourselves.

It's easy to sleepwalk through life and not notice the people around you, not to lend a hand to help someone through their struggles. It's easy to never do more than wave at your neighbor but if you do get the time to know them (ours was there manning the DJ booth and taking pictures), if you do take the time to connect with people in all aspects of your communities, life is so much richer. As I've said so many times throughout this journey, I never consciously thought about what kind of effect I could have on people – positively or negatively – but instead was just always myself. Now I see what an impact the littlest gestures can make and I am so much more mindful of that fact.

I feel like a lot of people in this world are afraid of each other or live their lives thinking that people are out to get them, going out of their way to avoid having to make eye contact with someone or God forbid, have a deep conversation. I've certainly been guilty of this at times. But I can tell you, when it comes down to it, the human race is an incredibly giving one and I am honored to be a part of it. Everyone has a story, something to offer the world, and also their own weight that they are carrying. Don't ever doubt that when you are down – and we all will be – that there will be people who step up to peel you off the pavement. And that those that are the ones to do it may surprise you. We all have so much to learn from each other if we just open up our hearts and our minds and let each other in.

As we said in our speech to those that were there and everywhere, we will never, ever be able to repay everyone for everything that they've done for us over the course of this tumultuous year, but rest assured we will pay it forward again and again for the rest of our lives.

"What do we live for if it is not to make life less difficult for each other?" - George Eliot

Big Benefit Bash

Saturday, May 1, 2010

I Alone, We Together

Cancer can be an exceedingly lonely disease, but simultaneously gives the opportunity to forge a closeness with your self that you never fathomed possible. No matter how much I try to put into words, into actions, to express what is happening inside my body, my head, my heart, it does not do it justice. No one else can ever truly understand what it is like to live with a sea of aggressively mutating cells in your body that have the power to eat you alive. A truly organic process happening inside you that you did not ask for, did not deserve. Not a doctor. Not a nurse. Not your spouse or family. Not the closest friend. Not even other cancer patients because everyone's journey is so wildly different.

I can't pretend to know what it's like for a dear friend of ours currently participating in a clinical trial to treat her breast cancer while at the same time raising two very small children. I can't pretend to know what the man across from my chemo pod needs at that moment when his eyes are glazed and his head is bowed. Every single person facing this disease, or watching someone close to them face it, handles the journey differently. It's finding a deep sense of empathy for each other that holds us all together. This is what's so amazing about the human race. Even though we can't pretend to understand the intricacies of the battles that each of us are facing, we can step up and be there for one another using our own experiences with hurt, pain, fear to know what each of us needs ... more than we may know ourselves. I have been so in awe of this deep and sincere love and caring displayed toward me.

You could take two seemingly same people - both young, strong, otherwise healthy, intelligent, determined and give us the exact diagnosis, prognosis, drugs, diet, everything, and I have no doubt that our reactions and outcomes would be markedly different. Because a certain chemo drug left no side effects for one person has no bearing on what it will do to the next, for whom it may leave beaten and broken from its wrath. Because one person can't tolerate the pain of the bone marrow stimulating shots does not mean they are any weaker than the one who can. This is because no one is the same. We are all complete individuals – structurally, molecularly, emotionally.

This is where the loneliness sets in. But it's also where I've discovered my most prized possession – my self – and that helps me to realize that I am truly never alone. This is not to discount the tremendous benefit and necessity that a strong support system brings. It's that support system that keeps me standing up so that I am capable of discovering what I am capable of. Without friends, family, strangers around me helping me to see what I'm accomplishing every day and illustrating how much having me in their life means to them, it would be easy to give up. Otherwise, it's only me in my lonely cancer world. It's this support group that helps me to realize my value in the world. Without them, it would be easy to listlessly go through the motions and just wallow in misery. With them, I've got a fire to fight.

But as painful as it is for the caregivers to know, their help can only go so far. Ultimately, it is up to me to decide to go the distance and to determine the path I am going to take to get there. Ultimately, it is me that has to grit and breathe through the bone pain, the straining tissues, the mouth sores. Only I can get myself on my feet every single day – some days which seem against all odds – and fight off the urges to give up. Only I can figure out who I am, what I need, how to get it, where to be, and who I need to surround myself with at that moment to get through it. This is at once overwhelmingly scary and incredibly empowering.

It is me who has to get stuck with a needle again, and again, and again. It is me that has to lie there in complete stillness in a narrow tunnel while cameras whir around eagerly searching for signs of cancer activity while I can do nothing but wait in agony for the results. It is me who has to watch those that love me try to make sense of something that makes no sense at all; painfully watching as I know how much it hurts them to see me suffer. I wish I could make it go away for them. I tell them that I'm going to be okay, although I'm dying inside worried that in fact, I'm not. Most often that's harder than the surgeries, the nausea, the unending fatigue.

But that's when the self comes in and building that relationship is vitally important. It took me a long time to realize what people meant when they said "this is the time to be selfish" or "this is the time to ask for help". And asking for help doesn't just mean from other people but also asking myself. When I am scared as hell and when I literally don't think I can handle being tethered to one more IV pole, I can tell myself that and we can talk through it. I can allow myself to be scared and allow myself to be honest and not worry about the ramifications. What I hear back has impressed me beyond measure. Sometimes it's the mind that kicks in as the strongest. Sometimes it's the body. Sometimes it's the heart. Sometimes it's just shear will that comes from places unknown, but it's always one of these parts of me that picks up the pieces and holds the rest of us gently until we've all bounced back and I am once again whole.