Desperation

I did not write much while I was in the hospital because I was so excruciatingly weak that I just could not do it. I never thought that would happen, but it did. I was almost afraid to write because then it would make what was happening real – documented forever.

Now that I'm removed from the setting and feeling much more at peace in my body and my mind I can reflect and express with more freedom from the "other side."

There were a couple of nights in the hospital that I thought it was the end. I've never, ever during this entire year-long battle thought that I wasn't going to make it. If I did think about dying it was for a fleeting moment and I was always able to push it away quickly and violently. However, after several days of unending fevers and unsatisfied sleep, my mind got the best of me. My biggest fear going into the stem cell transplant process was that I would acquire an infection that my body would not be able to fight. There are two people that I know of that did not make it through to the other side and it was because of an infection – not the cancer, not the chemo, but something that overtook them while their immune system was down and they could not recover.

When my fevers started getting up to 103, I feared that this was also my fate. The buzz of hospital bells and IV alarms, as well as the every-four-hours vital checks, kept me awake in the hospital, but so did this fear. I was afraid that if I fell asleep that I would not wake up and that no one would find me until the next round with the vitals machine. A couple of times when I would doze off I'd wake up with a jolt, screaming on the inside, gasping for breath and trying to understand where I was.

As the feverish days and nights continued I found myself praying. I did not know who I was praying to. I begged he/she/it to save me. I promised that if they did I would do so much good in the world. That if I was spared, if I was chosen to make it through this that I would be forever grateful and that I would dedicate my life to making the lives of others better. I'd find myself crying as I begged for my life as I spoke – in whispers – to this ominous being telling them that I was not done, that I was not ready to go. My tears were different tears than I'd ever felt before. They spilled and trickled out in such a natural and sincere way. They weren't violent or stinging. They were cleansing, involuntary tears.

I had fought so hard and made it through so much that the idea of something as simple as a cold virus killing me was just not acceptable. I could tell in the eyes of all the doctors that they were very concerned as much as they played it cool and kept ordering a strong arsenal of antibiotics ... nothing was working.

It's funny the things that you do and the things that go through your mind at a time of such vulnerable desperation. I thought about my funeral, about who would be there, about who would speak and what they would say. I thought about Craig and Sammy and cried as I thought of them alone in our house. I thought about my life and what I've done with it up to this point and I tried to come to terms with the fact that I had lived a fantastic life and done so many things and had the privilege to truly love and to truly feel loved by my family, my friends, complete strangers. I felt comforted that if whatever the source of these fevers was was going to take me that at least I had no regrets and that at least I felt I had lived my life as fully as I could. But at the same time, I knew that I had so much more fight left in me and that I had so much more that I wanted to do. But I became very, very scared and started to lose hope.

I wrote an e-mail to my close friends and in my head it was in a way a goodbye e-mail though I didn't say that in so many words. In my head I wanted them to know what I was feeling and I wanted them to know how much I cared about them. Then I thought about the hundreds of people that I had behind me, that I knew were also praying for me to all of their different gods and I kept thinking 'I can't let them down.'

Of all music, I chose to play Vivaldi on my iPod to try to relax myself. It brought back memories of Sunday mornings at my grandparents, waking up to classical music playing and the smell of Red Rose tea and buttery toast. It took me into a deep, distant place that I'd never been before. I was so, so scared. I kept thinking of the "fight or flight" lessons in psychology and thought that if I conceded to the fear, that if I relaxed into it and accepted that I was going to die, that I would be sending my body the message that I was ready, that I was done fighting, that it was okay to give up.

So each morning I would push away the fears and the tears of the night before and get out of bed, shower, do yoga stretches, work out with my exercise bands, watch funny movies and laugh like a normal 27-year-old. I was strong for my parents, for my husband and I never told them how I truly thought that I was going to die. I thought that if I said it out loud that it would happen and I didn't want to take that chance. I had to make sure that my mind stayed strong so that my body would follow suit. Then by the grace of all the Gods it did.

The doctors told me that my white blood cell counts had recovered and that this was likely what I needed. I distinctly remember Dr. Cooper saying that there is no better medicine than my own immune system. Like the little engine that could, my bone marrow started pumping out a white blood cell army that narrowed in on whatever it was knocking me down and took it out with a wallop of healing power. The power to fight the infection was inside me all along. When they held that thermometer under my tongue for the umpteenth time and my temperature registered at a cool 98.6 degrees I knew in that moment that I was going to live. I was chosen to be saved.

I am so forever grateful that I was spared and am so humbled and proud of my body and of my mind and my heart for getting me through. Now I have a great urgency to do so much with my life, but at this moment I am so very, very tired and am working on reintroducing myself to the world in baby steps ... baby steps.

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.

Sumo

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.

DI-CEP Daze

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.

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.