Thursday, April 29, 2010

Free Willy

When I sense my strength coming back and my body coming close to peace again it is an overwhelming feeling. Chemo can have the power to make you feel like you're no longer human, but it also gives you the chance to realize what it is to feel human ... to feel alive. Today the sumo weight is lifted and my heart and chest are so full with happiness and warmth. My white blood cell count is now 22.5, double the high end of normal (10.1) after being just 0.6 on Sunday. I've hit yet another tipping point. I am absolutely certain that I've bounced back from this – in shock and awe, but certain.

Craig and I went out to dinner last night. It was the first time I had been out of the house for anything other than a trip to the cancer center or hospital. I felt like I was a zoo animal that had been held captive and was now being released back into "society" to mingle with my species. We sat in the tavern/bar area – our usual choice seeking a less stuffy atmosphere. I felt like everyone was looking at me and I kept staring at them, marveling at how many business men and women were huddled at the bar clutching their frosted beer glasses or delicate wine goblet stems, gossiping over office blunders. I stared at an older couple leaning in toward each other sharing calamari and field greens salad flirting with not a care in the world. There was so much laughing, chatter, air kisses, glass clinking, waiters bustling around. It struck me that despite how my last two weeks seemed to me like a painful, hellish eternity focused solely on my body's demise, the rest of the world hadn't stopped turning. People have still been going to happy hour, enjoying wood-fired stone pies, getting close in the dark corners of taverns. There is so much happening outside of my little cancer world. When the cancer and its treatment becomes so all-consuming it can be easy to forget that – and even worse, to forget that you're still a part of that greater world – cancer or no cancer.

For me, it was so reassuring to know that all the things I love about life are still happening and will still be there for me – with plenty of new things to try – when I get better. Just because I hit a wall doesn't mean everyone else doesn't keep moving forward. Being reintroduced to society also takes the pressure off. Sometimes you can feel like the whole weight of the world is on your shoulders with pressure to get through the tough times, that fighting cancer is the most important thing on all the Earth. But that is far from the truth. My little battle is just a tiny droplet in the big bucket of battles that every single person on the planet is battling within and for themselves and together as a whole.

Today I drove my car for the first time in a couple of weeks. I love driving my stick with the sunroof open. It's freeing and exhilarating to not be carted around in the passenger seat. I stopped to get gas and the woman on the pump opposite mine kept grunting and would get in and out of her car while she did her transactions. Swipe her credit card, back in the car. Pick the type of gas, back in the car. And she sat in there with such an angry scowl glaring at the pump for not working fast enough for her. She gets out again to pull the nozzle out of her car and says out loud, seemingly to the heavens: "It is soooooo windy out! Ugh! This is awful!" in the most sincere angry tone I've heard in a long time then got back in her car and slammed the door, seething.

Mind you, it is a beautiful day. The sky is a Crayola sky blue with just a few cotton ball clouds and it's close to 70 degrees. In April. In New England. All I could think to myself was 'wow.' Yes, it was very windy, a warm, embracing spring wind. But was that something to be so angry about? Maybe it was because I had just sprung captivity, but I have been relishing in this weather all day. At least I don't have it that bad, , so bad that something like wind whipping my hair (which she should be grateful she even has) could upset me to that degree, I thought as I watched this seemingly crazed woman. I wonder what she would do if I came at her with a needle to stick in a catheter in her chest to draw viles of blood ... the very thing that I had just come from doing for the third time this week. Being pulled from society has helped me to now see how wrapped up we can all get in things that don't matter in the least. Having gotten so close to having nothing so many times now I'm glad that I can have that clarity and know that the good things in life far, far outweigh life's inevitable little inconveniences. I think I've always had my priorities straight, but this experience has solidified their ranking tenfold.

Tuesday, April 27, 2010

A Comeback?

I think I might be making a comeback. A slow, gradual comeback for sure, but I think it's happening. I no longer feel the dragging, debilitating aches and weakness of the past two weeks. I can move my legs, my arms, my fingers, my toes without sending my heart into overdrive. I can walk up the stairs without my quads aching and without having to sit on the landing at the top to catch my breath. My nose is no longer as attune as Sammy's which means I am no longer nauseated by every scent lingering in the air. I can get through a day without crying in pain or just pure frustration and exhaustion. There is still lots of room for improvement, but I believe I've crossed the valley and am on my way back up toward the peak of the next hill --- BEAM chemo.

I hit a very low point, the lowest I have ever been during this entire year, and have been riding that low wave truly without interruption since I started this DI-CEP chemo just under two weeks ago. For the first time I can confidently say that I was completely helpless and conceded. I couldn't do my daily walks and even stretching was exhausting. I've had no appetite and no energy to make my own food. By some stroke of kismet, Craig was off from work on April school break so I had him home to check on me, to bring me food, to bring me to all my appointments, to be my arms and legs and to console me when I couldn't slow my mind down and couldn't keep my emotions in check. But the weakness spilled over into the next week and I had to call my mom to come over early to help me to get something prepared for lunch and drive me to the cancer center. This chemo bout has taught me (finally) to ask for help and to say what I need and don't need. When you have essential no white blood cells (I got as low as 0.1) and your hematocrit is dangerously low leaving your body deprived of oxygen in its blood stream, pride is kind of thrown out the window. I would have let a perfect stranger bathe me if it met I didn't have to stand woozy in the shower.

But I came out of it, with the help of all that support and all the encouragement that I receive from the amazing people that I have in my life. Holy crap there were days that I did not think I'd ever feel like myself again, but again I'm amazed that now I can see that this too will pass on a very near horizon. My appetite is coming back and so is my regular sleep pattern – huge strides. And, most importantly my blood counts are making a comeback. Again, much credit must be given to my spongy, young bone marrow. I should never have doubted it. Also, a shout out to the O Positive blood donors out there whose cells are helping supplementing my own.

Craig and I spent 10 hours in the hospital on Saturday where I received two units of red blood cells and a unit of platelets to help me recover. After the platelets were sent through my port, I felt scattered hives start creeping up around my body. They'd be crazy itchy and then rise up as little bumps. One on my chest, then my head, then my back. I tried to pretend that I didn't notice as we both wanted to get out of there so badly and this was the last bag of blood, but I knew better. Once the bag had finished I told the nurse that I had developed some hives and when she saw them I got a figurative slap on the wrist for not calling her immediately. Now it meant more Benadryl and another hour for them to monitor me. I hate Benadryl. After it made me see the usual stars, I passed out sleeping. Woke up with chest pain and an EKG was ordered ... we thought we would never get to leave. But my nurse was fantastic and did everything she could to help get us home - including bringing me right into the nursing station for the resident on rotation to examine me there and look at my EKG results and see I was otherwise ready to leave. That was so much appreciated.

I've had to go back to Hartford Hospital every day since to get my blood cell counts checked but have not needed anymore transfusions. Today, my white blood cells more than quadrupled from 0.6 yesterday to 4.5, which explains the wrenching pain I had in my lower back and hips this morning - the biggest concentrations of marrow. The stem cells are beginning to transform into the cells I need and the Neulasta shot from last week is finally starting to kick in. My red cells are continually climbing, slowly, so my fatigue is starting to diminish, but my platelet levels are still diving so I have to be very careful with any bleeding. Teeth brushing was a blood bath this morning and last night I bent a nail low and the entire thing pooled with blood without the sufficient amount of platelets to help it stick together. They told me no hang gliding today.

As one nurse put it "the chemo is killing everything from your mouth to your anus," which explained why my gums were pulsing and sore with that just-flossed-for-the-first-time-in-months feeling and why my "anus" continues to be a point of sore contention. As my counts recover, the achyness is subsiding.

Like a germinating seedling, my roots are finding their footing on the ground again and my layers are starting to open back up and reach toward the sun. I'm still very fragile, but slowly, with enough tender, loving care, I can now see that I WILL be whole again and ready to take on one. more. round.

Thursday, April 22, 2010


A fellow stem cell transplant recipient told me that the high-dose chemo you receive before the transplant is the one that "really makes you stand up and pay attention." Well, it got my attention for sure ... and this isn't even the super killer stuff yet.

During my high school project graduation, I shimmied into one of those huge padded plastic sumo wrestler costumes to go at it with one of my friends in the ring. The ridiculous nude color sumo padding complete with a little blue sumo thong weighed a ton. To lift the little sumo arm or leg took so, so, so much effort and I remember when I was knocked down by the force of my opponents plastic belly, it took a solid five minutes to be able to muster the strength to get back up, flailing around like a beached whale. After getting on my feet I was so out of breath and my heart was beating a mile a minute. Never mind the sweaty skin-against-thick-plastic claustrophobia feelings. I write about this because this is exactly how I feel right now. Like I'm carrying around the weight of a sumo suit.

I have been weak and extremely lethargic the past few days. Wiping down a counter top or even carrying my laptop up the stairs are enough to force me to sit down and catch my breath afterward. Once I do sit down my heart will race and race from the "exertion." It's a different feeling than the tiredness and foggy headedness that I felt with the ICE. It is more reminiscent of the aches and fatigues I would get from the ABVD - but super sized. I got the strength to do some very gentle yoga out on the lawn today and now my muscles ache from it. It's as if every molecule in my body is so occupied with recovering from this chemo that it can't handle anything else but shuffling from place to place in the house and yard.

As tired as I am, sleep is hard to come by. I'm up at very strange hours and have those feelings of being just too fatigued to sleep. The Ativan helps with that and I find that it both calms the nausea and helps ease me to sleep.

I am eating, though what I eat is a bit strange. For example, today has been Kashi Autumn Wheat biscuits, two super thick yogurt and berry smoothies, and one spicy andouille chicken sausage. I'm just glad that I can keep food down and just listen to what my body asks for. I find it so odd that despite my normal pseudo-vegetarian diet, my body keeps craving the texture and greasiness of chicken sausage.

I can't drink water anymore. I drank so much in the few days following chemo that my body is almost rejecting it now. I can't stand the taste and smell of straight up H2O, but am able to add Crystal Light or drink Gatorade to make sure that I'm not getting dehydrated. My tongue feels like it is wrapped in a thin fuzzy blanket so a lot of things taste differently. My sense of smell is incredibly attune right now and that may have something to do with the taste changes as well. No one else can seem to smell it, but all I smell in our house is a dead, rotting animal in the wall (I heard it scratching for its life last week). It makes me so nauseous so I've been burning scented candles all day and relishing in those scents.

Earlier this week I was nauseous and tired, but I was able to get things accomplished and did not feel like the living dead as I do now. Everything is happening as it is supposed to. This is the expected feelings-of-crapiness timeline that I was told about. My reason for my weakness was reaffirmed yesterday when I went to see Dr. Dailey for blood work and learned that my white blood cells are down to 0.3, another new record. My immune system is nil and he expects that it will remain this way until at least through the weekend. So the neutropenic precautions are back in full force. Lots of Purell and I need to quarantine myself at home as I am at great risk. If I spike a neutropenic fever it's immediately to the hospital I go.

The hope is that by early next week the stem cells will have done their job to grow new cells and the Neulasta shot I received on Monday will also kick in with some white blood cell building action. I may need some blood transfusions in between, which is why I need to go into the clinic every other day to check my blood counts. My platelets and red blood cells are expected to drop rapidly as well. Luckily, I am able to do this locally with Dr. Dailey's practice rather than having to drive all the way to Yale.

For now I'm just trying to give my body what it needs and in a not so subtle way, right now it's telling me that it needs to rest.

Tuesday, April 20, 2010

Welcome Home, Stem Cells: Round 1

The reinfusion of my stem cells was really quite uneventful. You'd think that the influx of 6.5 million cells with organic homing devices frantically flying through my body to find where they are needed would at least illicit a plumb of smoke from a big toe or something. But no, once again, I'm amazed at how the human body works. Not believing it when they told me it would be a pretty peaceful process, I had visions of my body shaking as the cells would swam through my veins on rafts like they were navigating high-powered water slides. I'd imagined I'd have to be strapped down from all the pressure and that it would take hours for the wave pool to settle.

Instead, the stem cells that I worked so hard to create were dripped back into me over the course of 15 minutes. I felt nothing but a scratchiness at the back of my throat from the preservative that they were frozen with. They gave me a sour apple flavored queasy pop to counteract that. I had watched them pull out my bag of cells from something like an igloo cooler - classic blue and white - and put them into what looked like a hand towel warmer oven to thaw them to my body temperature. I lay under covers on the bed while the bag was hung on the IV pole next to me and the pump was set at a relatively quick rate sending the cells cascading in. My pulse, heart rate, oxygen and blood pressure were being monitored throughout and three nurses stayed in the room to watch over the process, all the while Craig was there by my side.

Craig and I were both a little annoyed as the nurses kept chatting to each other about mundane work complaints or protocols, talking about nonsensical things like how they're happy that the schools recently banned students the right to dye their hair outrageous colors. One irritatingly remarking with a snort: "I bet Karin would take any color." I just sneered back.

"Hello, don't you know what's going on here?!?" I was screaming inside thinking how momentous this occasion was – Craig and I sharing knowing glances at each other. They'd of course ask how I was doing every few minutes and make sure that the throat tingling wasn't progressing to throat closure as can happen with some patients who react to the preservative. I thought it would all be more serious, more monumental. But then I realized that they do this every day. Stem cell re-infusions are what they do and that instead of getting annoyed by their casual nature I should actually be comforted by it. Just because this whole stem cell transplant world is so bizarro land to me doesn't mean that it is to the medical team. If it was, that would be a major problem.

"Thanks for making that so painless," said one of the nurses.

"I do what I can," I said.

Erin, Dr. Cooper's APRN, whom I work most closely with, stopped by to check in.

"Are you eating pretzels?" She asked.

"Yes ... is that bad?" I asked, blushing.

"No. No. That's great," she said. "You're doing much better than others who go through DI-CEP."

My favorite PCA Wade also was wowed that I was up and walking around after I got antsy with waiting asking me, "Isn't it reinfusion day? Most people just lay there and sleep." I guess he doesn't know me very well yet.

That made me feel good to hear that I'm doing well considering, although I know that there is plenty of time to hit bottom. I've already started to feel progressively worse. They kept me in the clinic another couple of hours to flush the preservative out with fluids and to monitor my urine closely for any signs of blood. Every test came out clear. I guess the little guys are nestled back in and are ready to start birthing some much-needed red and white cells for me.

To clarify (if clarity is attainable in such a confusing process) it is not the stem cells that are killing the cancer or in any way ridding my body of the cancer. This is not a form of stem cell therapy. There is lots of burgeoning research on this for many diseases but we're not there yet. There was a piece on 60 Minutes this weekend about "stem cell quackery" doing an undercover investigation of a sick, sick person taking advantage of those with ALS, MS, cancer, taking their money for expensive therapies telling them that stem cell transplants will save their lives and allow them to walk again. That is not the reality - yet - though hopefully with enough research that will come very soon. It was sickening to see these people desperate for hope at a chance be so brutally taken advantage of.

I am incredibly luckily that the discovery of the powers of stem cells has been made and that science has been able to force a body to produce them, harness them, and be able to reintroduce them to build a whole new molecular system. This has made huge strides toward cures for blood cancers. For me, the stem cells are my recovery method. It is the very aggressive, very toxic chemotheraphy that is killing the cancer cells and good cells within me. As the world knows all too well, the science of chemo does not yet have the ability to discriminate good and bad cells. It is killing everything – right now – leaving me completely wiped of bone marrow which is where all of our blood cells are made. The reinfusion of the stem cells is what allows me to have that life-saving chemotherapy. Without them, I could not recover. So as uneventful as the reinfusion was, I still consider my stem cells a brigade of super heros on speeding water slides making a fresh new home where there once were cancer cells. I look forward when the other 6.5 million make their way in after the upcoming mid-May chemo and we're all one happy, healthy molecular miracle.

Thursday, April 15, 2010


In preparation for Wednesday's hospital admission, I'd been relishing every moment of freedom and every moment of feeling good. I went to the beach with my sister; I raked out our back yard; Craig, Sammy and I took a getaway to Newport, RI, where we walked the beach and cliff walk, took in the sites, and enjoyed some great meals.

Then it was impending doom time. I procrastinated packing my food, activity and clothing bags as much as possible. I let out a lot of cathartic screams of frustration knowing that I would soon feel like seething, steaming dog shit again. I jokingly asked Craig the night before I was to arrive at Smilow Cancer Hospital if he would just throw me down the stairs so I could break something so that I wouldn't have to go. As expected, he refused. He told me that my mom would be there the next day and that she would be taking me even if she had to hog tie me. I said that when I arrived at the hospital I would just drop to the floor dead weight so that they couldn't drag me to my room and attack my port. He sighed and made me laugh about how ridiculous I was being and reminded me with little pokes toward all the places that cancer cells still could exist to illustrate that this is why I was going in for this extra chemo. I get the picture, it just doesn't make the process any easier unfortunately.

My mom did arrive Wednesday morning. She was suprised that my bags weren't packed yet but didn't reprimand me. She just said: "Where's that fighting spirit? Let's get in it." We got everything set and made the now familiar 1:15 min trek down I-91 to Yale-New Haven. Once I arrived I was raring to go and ready to get the party started. It's always the night and morning before anticipation that gets me. Once I'm in the setting is when it all kicks in that I have to do this in order to reach a cure.

The 11th floor where I was an inpatient in Smilow has only been open since April 1 so everything is barely used and it smells like the paint and new furniture of a newly constructed dorm room ... not at all like a hospital ... yet. The ergonomic liquid gel recliner they brought in for us still had its tag on and we were told that ours would be the first rears to sit in it. The decor was all nicely tied in with cool grey-blues, creams, light fern greens and pale browns with the same light wood laminate floors with an elegant darker wood border that existed throughout the rest of the hospital areas. The room was huge, very bright and open. Could be a NYC studio apartment. There was a big area with a couch (which turns into a bed) and book shelves by the massive window which overlooked the city (including the back of IKEA) and I could just make out Long Island Sound in the far distance. My room had a large flat screen TV, a personal refrigerator and my own large shower. Not having to share a communal shower and fridge were huge pluses in my book!

However, shiny new things and all, it's still a hospital and four days in it went by slowly and painfully. Sleep was hard to come by with all the frequent checks throughout the night and nausea and fatigue kept me from doing much of anything. I was hooked up to my IV pole from noon on Wednesday through 4pm on Saturday which kept me on a tight leash. The thing continually beeped - rather shrilled - when I turned the wrong way and air got into the line or when it was time for a drug changeover.

The drugs: cyclophosphamide, etoposide, and cisplatin, began each evening around 5pm, preceded by steroids and anti-nausea meds. The chemo dripped for a total of five hours. Then came the Mesna, which served to protect my bladder and kidneys and ran for 24 hours. Then lather, rinse, repeat each night. All of this was piggybacked by constant saline fluid drip so I felt like Big Bertha at the carnival side show. I gained six pounds in one day from all the fluid being absorbed into my tissues. My fingers, ankles and joints throbbed (and I imagine they'll continue to until my body can flush out all of this). Getting up and unplugging my IV pole to walk to the bathroom several, several times a night certainly got old.

I've gotten the most nauseous from this particular drug regimen. Each morning I'd wake up and ask Craig to bring the pink bucket over just in case as I'd call for compozene and await my breakfast which usually helped to settle things. Now that I am at home I am trying to be more proactive about taking the zofran and ativan that the doctors provided rather than waiting for the nausea to be too far gone to be able to stop it. I seem to have it pretty well controlled and am able to pick at little meals and continue to suck back the fluids to flush out all the toxins.

Despite how much I wanted to desperately be done with the whole process, there were - and continue to be bright spots. It's those bright spots that I cling to so desperately in times when things get very dark, very lonely, and very scary. It's amazing what the smile of a familiar face or a glimpse at a budding tree can do for your psyche.

The nurses would unhook me for a half-hour shower and it might as well have been a Parisian Day Spa for how relaxing it felt to wallow under the hot water. When I did have the strength, I was also able to unplug and go on battery pump power and walk around the floor at my leisure. Well, as leisurely as you can walk with a cumbersome pole holding precariously swaying bags of varying weights.

I was even able to convince the nurses to allow me to head outside to the meditation garden a few floors below to do a little off-roading with my pole. I was permitted as long as chemo wasn't dripping at that time and as long as I wore a protective mask and gloves (ala MJ style). So off I went for 20 mins in the sun before the IV pumps started to beep "low battery" and it was back to room 248. I took my father out there with me the next day - though it was quite chilly, only 45 degrees - it felt

good to get fresh air as I pulled my mask below my chin to breathe it in while no one was looking. The meditation garden overlooks the city of New Haven and boasts beautifully woodworked benches and pagoda-type shaded areas, plus a calming and tranquil river that runs through it. It's the perfect respite from the monotony of the hospital room.

I had frequent visitors and a roomie every night as Craig commuted to work from the hospital, so that always makes things better. My mom, dad and sister were there for shifts throughout the stay to make me laugh or nap along with me. My best childhood friend came by with a girly goodie basket, our friend Serena, who works at Yale, made a stop over with the cutest mouse cookies from one of New Haven's most notable bakeries and even Ms. Deta, the biggest spirited art teacher that I know came by.

I even had a four-legged-friend come visit for a few pets and nuzzles as part of the therapy dog program to brighten patient's days. Her name was Roxy. Roxy Hart. Right after her visit both my mother and I were treated to a Reiki session which, as always, was thoroughly relaxing and helped to target a lot of the areas where I was holding tension so tightly. The next day a masseuse came through to work out my kinks in a 15 minute power session. All of these little things mean so much when you're otherwise barely able to focus on a book or flip through even the most senseless of magazines ... never mind having the capability to write. For the first time during all of this, blogging was the furthest thing from my mind. I just couldn't get the strength to do it.

Saturday, I was supposed to be at my college roommate's bridal shower where I was supposed to be fulfilling my Matron of Honor duties, but instead, there I was, still hooked up to the IV pole and aching to get out of there. But being the amazing person that she is, my little Frankie showed up at the hospital room with her step-mom on the way to her own bridal shower after a long trek from Virginia. Though I didn't get to be there to record who gave her what and to facilitate the shower games, I was glad that at least I got to see her on her big day. This chemo couldn't have been worse timing. Unfortunately, cancer treatment rules my calendar right now, and it's an extremely frustrating reality that doesn't allow for cancellations or delays. This must be done now no matter where else (anywhere???) I'd rather be.

I can take major solace in that this is one more HUGE step behind me now and once again I am home. It was wonderful to sleep in our own bed. I still woke up half-dozen times to de-fluid, but it was luxurious to sleep without the beeps, pump motor and monitor noises. I have an arsenal of three different antibiotic medications and two anti-nausea medications. The antibiotics are to treat me prophylactically for any type of fungal, herpes, or bacterial infection that could come up as a result of my white blood cell counts dropping to low. They are thick, white horse pills, so I have to do a lot of mental psyching up before I'm able to choke them down - especially if it's during a nausea wave.

I'm moving, though slow and unsteady. I got a walk in today - partially into the woods at the end of our road, then converted to the easier flat terrain of the street. I'm trying to do a lot of stretching as my tissues feel very sore, especially in my back and chest - I assume as a result of the chemo? Other than that I'm just very lethargic and am happy that this cloudy weather allows me to lay on the couch with a book without having to miss a beautiful, sunny day. Cloudy days are good for healing.

Tomorrow it's back to Smilow at 7:30 a.m. to receive 6.5 million of my stem cells back to boost this recovery process and get me ready for the final round: BEAM in an estimated three weeks. Not sure what to expect for tomorrow except that everyone but me will be able to smell my eau de garlic & creamed corn parfum after my stem cells and their stinky preservative are re-infused. I'm most eager to see Sammy's reaction.

Friday, April 9, 2010

Double the Chances

As we arrived at Smilow on Wednesday I couldn't help but feel like I was back in college again anxiously awaiting to see the bulletin board where the exam results would be posted and scanning along the list looking for my student ID number and subsequent grade.

I'm wildly competitive – especially with myself – so I wanted to knock all of my body function test scores out of the park. The previous day I had a total of six different tests including a MUGA scan and EKG of my heart, three different pulmonary tests to check my lungs and most important of all, a PET scan to get a 3-D image of my whole body to search for any hot spots that might indicate cancer activity.

I especially liked the pulmonary tests because I got to be an active participant vs. just lying there hooked up to machines. And, the results were instant. The tech who administered my tests was fantastic about explaining everything I had to do and pumping me up while I was blowing with all my might into the machine. I did very well with my lung capacity and strength. He even gave me a fist pump and said "Okay, you impressed the tech," when I registered at 103% of expected results. A normal, mostly sedentary person is usually in the 80s he told me. However, the test that measured how much oxygen is dispersed into my bloodstream didn't register such stellar results. He explained that this is likely caused by the Bleomycin, one of the drugs in my ABVD regimen, which can reduce my lung capabilities long-term. I still passed well enough to be cleared for this upcoming chemo. It's just something we'll need to watch in the future.

The meeting with my Yale oncologist revealed that I had a great outcome on all the tests and would have no problem with the chemo. In fact, he wants to give me even more chemo. In a little exam room with Dr. Cooper, his nurse, Erin, and my stem cell transplant coordinator, Kathryn, it was explained that they thought the best move for me to be cured from this forever is to do a double stem cell transplant. As if a single wasn't confusing and intimidating enough! However, after long, careful discussion I understand that this additional regimen will give me an even better shot at never, ever having Hodgkin's rear its head again. The worry about the long-term effects of being exposed to so much toxic chemo or having it leave me predisposed for other cancers is much outweighed by the fact that I have a very aggressive disease right now that could kill me. There's no sense in worrying about statistics for things that may or may not come up in the future. Right now, this is here and it's real.

My PET Scan was clear of any apparent signs of cancer meaning that the salvage ICE chemotherapy did its job. This was the first time that I was able to see what the PET Scan images look like as Erin pulled it up for me on the computer and I could see my body from different angles and where certain organs were lighting up because they were working on dissolving the radioactive isotopes within me. Fascinating.

There is one area near my sternum that is lighting up as a hot spot. We've talked about this area before on previous scans. However, Dr. Cooper and the team at Yale think it's unlikely that it is cancer as it would be odd for one spot to remain while every other area of activity (my abdomen, spleen, mediastinum) had dissipated. He thinks that it may be my thymus gland lighting up or possibly a blood clot. We're going to watch it. So, I suppose we can tentatively say that I'm in remission?

Though there is no cancer showing up on the PET Scan, there also is no one test that can definitively say that I am cancer-free. This is why we are going to add a chemo regimen called DICEP followed by an extra mini-stem cell transplant to help me recover. If there are any rogue cancer cells remaining that might have been resistant to the ABVD, ICE, and the upcoming BEAM chemo, the high-toxicity chemo drugs of DICEP will be another shot at wiping them out. They want to put me through this because I have "concerning disease." When I asked what "concerning" meant, I was told that because my disease was so extensive when I first presented with Hodgkin's at stage 4b and because of how quickly I relapsed that I have an aggressive form of the disease. Because I am young, strong and active, and because I tolerated the previous chemo regimens so well, the docs and nurses are confident that this is the best course of treatment.

The DICEP regimen (dose-intensive cyclophosphamide, etoposide, and cisplatin) will require a four-day hospital stay during which I'll receive the chemo as an inpatient at Smilow Cancer Hospital. This starts next Wednesday, and I hope to be out Sunday at the latest. Then on Monday I will receive back some of my stem cells that they've thawed out for me in order to help me to recover from the chemo.

I'll have around three weeks to get my bearings back during which time I'm told I'll feel real crappy, basically like a prolonged hangover "without the fun of the night before." I'll be very bloated from all the fluids they'll have to give me, will be extremely tired and not hungry.

Just as I am starting to feel better, we'll begin the more in-depth treatment that we've been planning for since February. This will be the 10 infusions of BEAM chemo over 6 days followed by the transplant of millions of my stem cells on the 7th day. For the next two weeks, I'll stay in the medical hotel while the high-dose chemo side effects kick in and while my body deals with the reinfusion of my cells and the rebuilding of my molecular systems.

Out of the 100 or so stem cell patients each year at Yale, Dr. Cooper and his team perform this double transplant on about a dozen patients. I guess I should feel ... special?

In all seriousness, I do completely agree that this is the way to go. I'd rather concentrate the suffering into a shorter time period than have to deal with the unthinkable news of a relapse in the future. Let's kick this once and for all. Bring it on - again, and again. Then let that be it. Forever.

Monday, April 5, 2010

Would You Like Prayers With That?

We opened the double doors in the restaurant vestibule and the scent of garlic enveloped us. In fact, we were inhaling it all the way in from the parking lot. A smell that meant we would soon be ruminating over some heavenly meals – likely with melted mozz and smears of olive oil involved.

The place was classic Italian, straight out of New York City's little Italy, fake gazebos with strung lights and ornate efforts made to make it look like we were in Rome, though we were in fact in an industrial parking lot just off the I-95 ramp in New Haven. However, the sausage packing warehouse and the deli advertising hot, melty grinders next door did help to set the scene.

My mom, dad and I were escorted to a table under one of the "gazebos." I was wearing pink sweat pants, my go-to khaki cap and a zip-up. Out of my shirt gaped a huge chunk of white gauze taped down with a couple layers of clear dressing that served to wrinkle the skin on my neck so that it looked – and felt – like the skin of a wilting apple.

I don't know that my parents noticed, but as soon as we were sat, I could see some of the restaurant workers whispering and gesturing. When I'd look over behind the counter they'd avert their eyes and act busy. It's a reality I've become quite accustomed to, and it doesn't bother me in the slightest. I know that they were just trying to figure out what my story was ... a young woman with what looks like her parents and it's pretty apparent that there is no hair under her hat ... and what is that on her neck? I get it. I'd probably be sneaking glances too. All I was concerned about was getting some of that wafting garlic into my belly.

Our waitress came over to our table and before even greeting us she leaned in close and started whispering to my mom about how horrible the table of old ladies in the corner was being to her. She said that no matter what she did, it wasn't enough, and that she knew they were going to be horrible tippers anyway. She said that she just wanted to drop everything and walk out, but that she needed the money. We empathized and were all a little puzzled about why she was divulging this to us.

Then she locked eyes with me. She was a tiny thing – barely five feet. Obviously of Italian descent herself with dark wavy hair, dark eyes and olive skin. I'd guess that she was about my age, maybe a few years younger.

"Did you just come from the medical office next door?" she asked. It was a fair assumption by the looks of me.

I explained that no, I was at Yale-New Haven hospital.

"Oh, doctor's appointment?"

Well, actually ... . And I went into a very brief explanation of what I was going through, that I had cancer that couldn't be treated locally, that we were checking out the hotel where I'd be staying for a couple of weeks and wanted to try out the restaurants close to it.

"And you're out eating? I hope you don't mind me asking, but I thought that people feel awful afterward like they couldn't get themselves to do anything for a week ... well, that's what my dad said," she replied to my cancer adventure summary.

I explained that no, I hadn't just received chemo, that I hadn't started that yet.

She pried a bit further, but in a polite way, obviously confused leading with her eyes for more information. Then I remembered that she could tell that I had no hair and was probably wondering how I got that way without chemo. So, I explained further that yes, I already received chemo, but at Hartford Hospital and that it was only high-dose salvage chemo to clear me out before the real high-dose chemo would start and the whole stem cell transplant process would take place.

"What's your name? I'll pray for you." she said abruptly, catching me off guard with her response.

"What?" I asked. I thought that I heard her right but wanted to be sure.

"What's your name? I meet a lot of people so I keep a prayer list ... I'll add your name to it," she clarified. I felt like I was being added to a VIP list at a club or something. Or, like if I came in I'd get a free tiramisu for being a cancer patient.

"Thank you ... that's so sweet of you," I said and told her my name.

She jotted it down on her waitressing pad and snapped it closed walking away with our orders.

My parents and I looked at each other and recounted what happened with this perfect stranger as we noshed on the mini garlic knots with pepperoni surprises baked inside them.

After we finished our lunches, which were all in fact covered in oozing mozzarella and smears of olive oil as suspected (and hoped for), we packed up and headed for the door.

"Wait," the waitress called to us. "I'll walk you out."

She told me about these healing masks that she'd heard of. That her mother had used them when she was very depressed. That you go to this healer - a woman with long, black hair and if she chooses you and feels your spirit, she'll work with you. She jotted down the name of the practice and told me to Google it. She told me that she hoped it would help me and told me again that she would be praying for me. I had no idea what she was talking about but was so taken aback by her passion, her spirituality, her beliefs.

"Don't forget, my name is Christina, next time you come," she said as she breezed away.

I couldn't help but picture her at night on her knees at the side of her bed asking for help for me – someone who just happened to be seated in her section that afternoon and for whatever reason she was drawn to.

I do hope that I see her again and when I do that I can tell her her prayers worked.

Saturday, April 3, 2010

Hermit Crab

Today I just want to unzip my skin, step out, and find a new body to crawl into. I wish I could be like a hermit crab. I've outgrown this shell and I want out. out. out. Let the real me escape and let me find an exquisite new, strong and welcoming shell.

I'm feeling defeated and helpless and for the first time I'm feeling very, very scared. I woke up so angry once I went through the usual "coming back to my reality" routine. I couldn't snap out of it.

I went into the bathroom and ripped off the dressing from my catheter placement leaving the skin around my neck red and raw and revealing blood blisters in addition to the pulsing point of entry. My neck still feels bruised and tender but I couldn't stand the constant tug of the choking tape any longer so into the garbage it went along with the browned and bloodied gauze.

Then I just started crying at my reflection in the mirror. Shivering, hovering crying looking at these new hash marks, at the pink skin of my other scars, especially the one above my port that is spreading wider and wider by the day. My eyebrows and eyelashes are starting to thin and I fear it won't be long until they, too, are gone.

I desperately, desperately miss what I used to look like. I look at my wedding pictures and see a strong, beautiful woman and now I look at my body and it's totally different. It's heavier and saggier. The tone I used to have is gone and my skin is covered in scattered brown slashes revealing the chemo-burnt tissue below it. I know these things don't matter. I know it's trivial and vain, but today I hate my face, my body, my bald head. I want to slice off my skin to crawl out of my own body and find one that's pristine with no drugs, no cancer, no wounds.

I slammed a few doors and then made it downstairs only to discover online that a 12-year-old boy with down syndrome that I've never met, but have been thinking about every day had died. Died from complications from the treatment for the leukemia he'd been diagnosed just a short time ago. I've felt his spirit since my mom told me about this big-hearted young son of her co-worker who loved spider man. His father told my mother that every night when they would do their bedtime routine and it was time for prayers, he would say: "We have to pray for that girl that's sick - the one whose mom you work with." And they would pray for me every night. Me, this person that he never met but wanted me to get better. When I found out he was at CCMC receiving chemotherapy and had been diagnosed with leukemia I started praying back to him. But today, his short life is over and it absolutely breaks my heart.

I was so angry about him, about me, about everyone that ever has to go through this and I'm so worried that I'm tapped out of my own strength and that I have nowhere to turn. I literally buckled at the knees and broke down on the kitchen floor choking and heaving. Craig tried to console me but I only pushed him away. When I heard the vacuum running and I knew he couldn't hear me I screamed and screamed "What the fuck did I ever do? Nothing! Nothing!" and kicked the wall with the bottoms of my feet like I was having a toddler temper tantrum.

I'm not one to get angry, and I'm not one to feel sorry for myself, but this morning I just couldn't take it anymore. I physically feel great, but sometimes, it's when I feel good that I'm most emotionally unstable because I get this taste that I'm back to my old self but realize that I have a long, fucking way to go. I realize that the hardest part hasn't even started yet. And, the hardest part of all, I realize that it might not work, just like the first rounds of chemo didn't. I realize that I, too, could die from this and get so overwhelmed with that weight and the worry of what the hell I can do about it (anything?) and about how the hell I am supposed to know what I should be accomplishing during what could be the last few months of my life.

I know that the answer is not crawling around on the floor crying about it, though I think I needed a good cry/scream/swear session. I'm done now, and it's time for a bike ride in the sun so I can burn some of this anger and anxiety seething within me.