Sunday, February 28, 2010

ICE Round 1, Day 3, 4 & Aftermath

Obviously I have slacked on the daily updates. Getting the strength to write was near impossible. In short, I've been feeling awful. After day one, there was no more dancing with the IV pole. After the second day of meds things certainly got to be woozy, cloudy and anxiety provoking. By Friday after Dr. Dailey stopped by to tell me I could be discharged I was showered, packed up, shoes on and unhooked from the port waiting eagerly in a hospital chair when my mom and sister arrived to take me home. Since I've been home, I've been spending most of my time trying not to vomit or mustering the strength to get off the couch.

I handled the Carboplatin okay when it was added on the third day bringing the total hours of receiving drugs to five. However, each night when the meds finished dripping, I got very nauseous despite all the nausea blockers I would take hours before. Luckily, the "as needed" anti-nausea meds seemed to cut it, though on the last night I woke up needing it twice. I wasn't feeling hot at all Friday morning, but I wanted to go home so, so badly that I sucked it up as hard as I could. Dr. Dailey came by and I told him that I was doing okay and that I was definitely ready to go home. He agreed and provided me with some at-home scripts for nausea blockers and Atavan. I felt as if my head was disconnected and that my eyes and appendages were buldging from all the fluid I'd been in-taking and all the hot, stale air. I hung my head out my mom's car's passenger window like a dog on the way home and she even opened the sunroof for me though it was snowing right into the car.

But it wasn't all bad. I just feel so badly right now that it's hard to remember anything else, but I'm trying to focus on the positive as unfortunately I've got to do it all again ... twice. I had great surprises from some more visitors. Nicole came by to have lunch with me. Melissa, Leah and Kyle came Thursday evening, while my chemo was dripping, with treats and smoothies, then my brother-in-law, Eric, showed up to add to the laughs and Craig stayed until I was ready for sleep. We got quite rowdy as they played props with the ridiculously small TV monitor on an arm that served as the entertainment in my room. More co-workers stopped by with gorgeous flowers, sweet notes, and my fav Starbucks treat.

All the nurses were truly, truly amazing. I had great care the whole way through and never felt alone or neglected. They even rolled around with a "high tea" cart on Thursday while Craig and I were relaxing. A nurse in a crazy purple and red hat came in with a vast array of fresh pastries and donuts, coffee and tea to choose from. Fantastic! I enjoyed a 45-minute massage which felt fantastic on my achey legs especially, and even received a Reiki session the morning of my discharge. I was so taken away to a peaceful place that I didn't even hear my boss come into the room with a latte for me - very stealth. I also took a wellness workout class with two other cancer patients - one just 18 years old who had been in the hospital for a month, and a 60ish year old woman who was neutropenic and had to wear a mask to protect herself. I, on the other hand, managed to snap the exercise band they provided us while doing a set of tricep curls. It was humbling and made me realize how good I still have it, and how I do not want to lose my strength and how hard I'll have to work to keep it.

Now I am home and as I said, my time has literally been spent trying not to vomit. Friday I felt real woozy, but my symptoms were controllable for most of the day. My mom and sister cleaned my whole house while I slept and watched bad TV. Then Craig got home and my Dad arrived and we all just relaxed and watched the Olympics and I watched them play Wii Fit trying to do their own ski jump and slalom races, Craig bouncing up and down on the Wii board dodging wrecking balls in the obstacle course. I kept asking them to do funny things to keep my mind off the pain. Those included my mom doing mock Olympic sports around the house with a "Fuck Cancer" beanie on her head. This was funny. I'd call out "speed skating," "short program," "skeleton," or "bobsled" and she'd pantomime. Oddly, they all looked alike. It was hilarious.

But then suddenly the laughing turned into awful, awful stomach pains and I got very serious and snippy. I hadn't had a bowel movement since I was admitted to the hospital and the nausea blockers tend to block the action down there too. So, it was debilitating s-pains to the point where I was asking someone, anyone, to just stab me in the stomach to alleviate the pain. I sipped on hot chamomile tea, did the exercises that my mom said she would do with her c-section patients that were clogged up, but nothing (still) has seemed to work. With awful pains and vomit hovering right at my throat sphincter I was able to get up to bed, take an Atavan and fall asleep.

Yesterday I woke up with less stomach pain though the nausea was still there. Craig had to drive me back to Hartford Hospital to get a Neulasta shot at 7 a.m. This is the equivalent to 10 of the Neupogen shots that I used to get during the ABVD. It will serve to stimulate my bone marrow and get my counts back to reasonable levels. The nurse practitioner explained that I'll have a lot of bone pain in my hips, shoulders, chest, and gave my a prescription for vicodin. I'm starting to feel it this morning and may in fact go get that script filled. The rest of the day yesterday I was uneasy but stable. I got enough strength to take a walk with Sam and Craig down at the park, which was hard, but felt great. Dr. Dailey told me to alternate rest periods with activity periods so I'm doing my best, even if it's just a few minutes on the treadmill. Much of the day was spent cuddling with Sammy and watching trashy tv like "16 and Pregnant," "America's Next Top Model" and "Real World DC." I ached to be able to sleep, but the stimulating effects of the steroids matched with the uncomfortable stomach feelings prevented that so I watched "Billy Elliot," started a puzzle and picked at whatever food I could take - forcing down nutrients.

Then nighttime came and it was almost time to be able to take an Atavan which helps with nausea and anxiety. I got up off the couch to let Sammy out while Craig slept a few cushions over. I shut the front door, turned back around, burped, and that was the end. There was no stopping it. I woke Craig up to wrenching vomiting. I made it to our nice, wood-woven garbage basket in the living room - not ideal - but better than the floor, I suppose. Craig ran to get a replacement and I shifted my barf aim into a cardboard box as he hovered over me. It kept coming and it sounded and smelt inhuman as I wretched animal-like. I despise, despise, despise throwing up and can't remember the last time I did it. Tears streamed down my face and I was sweaty and achey in my already raw intestines. I had been so proud that I never threw up from the ABVD. I guess high-dose chemotherapy is no joke. Once I brushed my teeth and showered I admit that I did feel better. For the first time in four days I wasn't nauseous, but I worry that this will continue, and I know how important it is to keep nutrients down.

This morning? So far so good. More achey and weak than nauseous so hopefully that's a good sign. My little brother made the trip from Roger Williams so I am looking forward to seeing him today and hope to again be able to make it out of the house for some fresh air and a walk. Other than than, just taking things literally hour by hour.

Thursday, February 25, 2010

ICE Round 1, Day 2

I'm starting to get the urge to rip this IV line out of my port. It's getting old being tethered to this pole. It's certainly not as agile and stealth as I am. It's like walking around with another person that doesn't know personal boundaries. There are six wheels like spider legs and maneuvering it is like trying to maneuver a dud shopping cart that squeals and tends to the left. This is especially precarious during my hourly bathroom trips. The pole doesn't exactly fit in there with me so I have to close my room door and pull it against the outside of the bathroom door feeding the tube through a crack and I get just enough slack to reach the toilet seat. However, IV pole or no IV pole, I've been walking laps around the unit a few times a day at a good clip. Yesterday I got up to six laps holding my pole like we're walking arm in arm. This morning the speed slowed some; I am starting to feel more lethargic and I think the drug effects are starting to settle in a little.

Yesterday, my sister and parents came for much of the afternoon. It was great to see her all tanned with California sunshine. A good contrast to the dreary, dreary weather that's been outside my hospital window. The originally forecasted snow has instead been only rain and slush so I haven't seen the sun since I've been admitted. We talked and caught up and she brought me some fun West Coast trinkets that now decorate my window sill paired with a bouquet of flowers from my best friend since childhood, Kristen, who also made it by for a visit yesterday. It's a combination of the cala lilies I carried in my wedding and the Gerbera daisies she carried in hers. My parents and sis took walks with me, we played cards and watched videos. I finished Lance's book and am onto my next, so in short, I'm keeping busy.

A highlight of the day was the chance to take a shower, albeit in a communal shower. I wore flip flops. That meant I could be disconnected from my pole and it was quite, quite liberating. They kept my port accessed so that I wouldn't have to get stuck with the needle again and liberally applied Glad Cling Wrap with waterproof tape all over the area to protect the dressing from getting wet. I milked the "unhooked time" for all that it was worth and certainly did not hit the nurse call when I got out of the shower. I figured I'd just wait until they thought about coming to reconnect me to my fluids. To add to this best part of the day, when I came back to the room all fresh and clean there was my boss Lee and a co-worker Marcia there to visit with armfuls of candy treats and a dark chocolate Dove ice cream bar. It was great to visit and catch up with them. It's been almost three weeks since I started my leave of absence from work.

Last night when the chemo drugs started at about 5 I got very tired. They dripped until about 9pm and then I got the nausea wave again at 10pm or so, but again the nausea blocker they gave me worked wonders. I immediately fell asleep and didn't wake up until 6am when they came to draw blood from my port and had to disturb me to roll over. They were in three other times throughout the night to administer the post-chemo drug Mezna but I didn't even crack an eye. I was out. Luckily, I've always had an uncanny ability to fall asleep anywhere, one time even on a fur couch at a posh New York City night club with techno music blaring and people dancing all around me. There are many witnesses. I'm always the first to fall asleep at parties and am known to curl up anywhere to retire. When I'm tired, I'm tired. This sometimes handicap works in my favor here because it must be a nightmare for light sleepers with bed alarms going off and frequent announcements over the speakers throughout the day and night.

This morning I'm feel very swollen from all the fluids I've been in-taking and very dry from the air here. It's quite toasty and there's not a lot of circulation. Fresh air will be wondrous upon my release tomorrow!

Dr. Dailey has been by each morning to check on me. He reported today that my bloodwork has looked good, that my electrolytes are holding out. I'm a bit anemic, which could be causing the sloth-like feeling I'm starting to encounter. Overall, he's very pleased with my progress and has full confidence that I'll do well with the Carboplatnin I'll be getting today for the first time.

Lots to look forward to this morning and today. I already had a visit from another huge hearted co-worker, Joanne. Craig will be back this afternoon and several other friends have mentioned they'll be dropping by. I'm headed to the wellness workout now. I asked if I could be disconnected for it, but no suck luck, though I'm assured that I won't be the only one in there with an IV pole. Then my masseuse comes at 11 a.m. for an hour of bliss.

Wednesday, February 24, 2010

ICE Round 1, Day 1

So I survived the first day of the ICE chemo regimen. We "checked in" to the HH Spa in the fifth floor of the Bliss Wing (appropriate) around 8:30 a.m. yesterday. Nearly 24 hours later, I've had two sacks of chemo drugs, a constant drip of fluid at the rate of half-a-cup every half hour from 11 a.m. yesterday on, three small sacks of another drug to protect my bladder against the chemo effect, lots of snacks that I brought and (gasp) two pretty decent hospital meals.

My room is large and private. I have my own small (very small) TV that gets lots of channels and my own bathroom and sink. However, no shower. This I have to share communally with the rest of the floor. I've asked my mom to bring back flip flops for me as this reminds me of college days and I'm a little skeeved about going in there barefoot.
I have a huge window that runs the length of the far wall through which I was able to watch the chunky snow flakes mixed with soothing rain throughout the day. Signs of healing. It seems there will be mixed winter weather outside the window for my entire stay here, but I actually think that's more tolerable than bright sun would be as in this type of weather I feel like you're supposed to be cooped up and cozy. The sun would only make me ache to be outside soaking it in.

The care has been nothing short of extraordinary. And I'm not just saying that because I work in the marketing department, really. I've been truly impressed by the resources, the attentive care, all the offerings. We've been flooded with helpful pamphlets and printouts with details on each of my drugs. We had a visit from a social worker to talk about finances. A nutritionist is scheduled to stop by at some point. Craig was given a rickety but mildly comfortable cot to stay the night in. There are no limitations on accepting visitors or having sleepovers. I'm signed up
for a "wellness fitness class" Thursday morning with the other patients on the floor. Volunteers will be coming by to give me a therapeutic Reiki session each day, and I was even given a gift certificate for a massage scheduled for 11 a.m. Thursday right here in my room, paid for by a generous grant from an organization called Angie's Spa that has partnered with the Gray Cancer Center. All of these pieces certainly balance out the bad. It's *almost* like our Sandals honeymoon. I can get plastic canisters of oj and cranberry juice or mini cans of gingerale whenever I want it and Hood ice cream cups are available on demand! My bed moves up and down and I can adjust my foot and back positioning with ease.

My nurse, Susan, was with me all day yesterday and she was so thorough and thoughtful. The first step was to access my port yesterday morning. It's all done under a lot more anti-infection protocol here as an inpatient. She wore a mask, gloves, a gown, and I had to turn my head during the insertion. The needle went in beautifully and now it's all covered and taped and nothing that I have to worry about for the rest of the stay. I can even shower with it accessed after they cover it with cling wrap.

The day progressed with a whole lot of waiting, but Craig was with me all day, and we kept busy taking walks around the oncology/palliative care unit (with my IV pole in tow since we are now attached), reading, napping, playing games, etc.

Late morning I took a drug by mouth, Allopurinol, that will lower the amount of uric acid in my blood and protect my kidneys, which can be damaged by one of the chemo drugs. Then at about 5pm came the nausea blockers, also by mouth: Zofran, Emend, and Decadron. It wasn't until 6:30pm that I started the chemo drugs. I'm told this is because the pharmacy mixes all of the outpatient chemo first since the cancer center closes at 5pm then they tackle it for us inpatients. After they mix it the drug bags go through four different check points to verify accuracy, so it's understandable that it took a long time.

Susan was detailed in explaining what the effects of each of the drugs would be. She went over everything about the amounts I was being given, how long each would take, matched it up to my ID number and told me that I should feel no differently than I did before she started dripping them in - and if I did, to let her know right away.

The first was the Etoposide (E). It dripped into my port for one hour. Then came the Ifosfamide (I), which dripped for three hours. With such a late-day start, this meant that I received chemo until after 10:30pm last night. The Ifosfamide is the one that is nearly double the dose a normal adult would receive as part of the pediatric protocol I am under. The Carboplatin (C) won't come into play until Thursday when I will receive all three ICE drugs. All the while that these are dripping, I receive IV fluids as well. It's extremely important that I drink a lot even on top of that to flush out the residual tumor particles that the drugs are smashing through. I get to pee in what's called a hat in the toilet so they can monitor my urine output. They're watching all of my bodily functions very closely.

All yesterday I felt great. My parents arrived to visit for the evening just as the chemo was getting started. They joined Craig and I as we watched Jeopardy, chatted and laughed and ordered in a couple of pizzas from J Restaurant/Bar just across the street - they deliver right to the floor! I was so hungry from the anti-nausea drugs and steroids. I powered my whole penne pasta florentine with chicken hospital meal then 4 pieces of pizza. I guess my appetite isn't affected. However, Dr. Dailey warned me this morning that I might want to tone that down as the stomach upset may still be on the horizon. I did some laps around the unit with my parents and showed them the lounge area where there's a big fish tank, comfy couches, and a pantry with food and drink up for grabs. I'm grateful that I'm able to walk around and eat whatever I want. I really have no restrictions.

It wasn't until about 11 a.m. last night when I started feeling crappy. I all of the sudden had a huge wave of nausea, complete with that hot, scary feeling. Way worse than I ever got with the ABVD chemo. Sweaty all over and head spins and that awful awareness of my throat sphincter. I thought for sure I was going to vomit. I called for the nurse and she was able to administer another anti-nausea drug which Dr. Dailey had ordered in anticipation of this reaction (God bless him) to be given on demand. It worked well and had the dual effect of knocking me out to sleep which helped everything. The night nurse said she tried to wake me up and I wasn't budging, even with a shove, so I guess I slept deeply, at least for a few hours. But then I was woken every three hours to receive Mesna, a drug that also drips into my port for 15 minutes and will protect my bladder from damage that can be caused by the chemo drugs. I got the last one at 6 a.m. and have been up ever since.

Today, same routine. My sister flew in from Cali late, late last night, delayed by the snow, and her and my parents are currently sleeping at my house and taking care of Sammy. I can't wait for them to arrive later this morning. It'll be great to see her! Craig is also taking a half-day of work and will be back to be with me later this afternoon. Even if we're not talking or all doing our own thing it is great to have others around me, so that I don't feel alone, especially when my IV tether puts things out of reach. Even though I can unplug it from the wall, it's not exactly dainty and the spider-like wheels don't make it into tight spaces to reaching things can be difficult. It'll be a good feeling to be detached on Friday. But until then I know that it's feeding me life-saving meds so I'll deal with it.

Another video produced by my talented husband. We found some creative ways to pass the time. I wonder what we'll be doing on day 4, eek:

Monday, February 22, 2010

The Time Has Come

Tomorrow starts my first round of pediatric high-dose ICE chemotherapy. It'll require 3 nights and four days in the hospital, but Dr. Dailey tells me that it should be "uneventful" and that I'll do well with it. Being in the hospital will allow me to receive the fluids that I'll need and the pre- and post-chemo meds plus super anti-nausea blockers. It's important that I'm monitored for side effects. I'm told that I'll be able to unhook from my port for periods of time so that I can walk around (plus apparently the steroids will make me very restless). I'll have my own room and Dr. Dailey has already told the nurses that I'm coming, that I'm "really nice" and that I work there at Hartford Hospital, so that's a plus! I'm just trying to think of it as a little spa retreat for a few days - on demand cocktails and all.

These past two weeks have been full of preparation. First and foremost was the embryo preservation and the final count is 3 healthy, growing embryos that are now being cryopreserved on a shelf in a secret location until we are ready to use them. We are thrilled at the outcome and so happy that we went through the process. It makes our future even brighter.

I've been walking every single day. Luckily it's been beautiful out so I've been able to get fresh air. On the days when I don't get out before nightfall, I now have a fabulous treadmill on loan from a very generous friend! I've been upping my calorie intake trying to put on some pre-chemo pounds and eating lots and lots of fruits and veggies and au natural foods. I've been reading up on stem cell transplants, watching video blogs and reading about other's experiences, researching my chemo regimen, visualizations, and coping mechanisms. I digested another Dr. Bernie Siegel book and am just about done with Lance Armstrong's "It's Not About the Bike" - very, very inspiring and the book I've most been able to identify with. We share a very similar coping style and mentality and hearing his struggles and triumphs really affirms my beliefs as to the best way to take cancer head on.

Craig and I took a road trip over the four days that we had post-IVF procedure and pre-start of chemo. We went to Philly, a city to which I've never been, and I got to run the actual steps that one of my idols, Stallone, climbed as Rocky, we ate cheesesteaks and explored the Franklin Institute. Then it was on to Virginia/DC to visit my college roomie and her fiancee - two of my favorite people in the whole world. We had a fabulous time just hanging together eating good food, playing Wii, exploring Georgetown, watching the Olympics and marveling at all the spandex over a few beers. They're the kind of friends that you just automatically fall back in sync and comfort with as soon as you see them no matter how long it's been. That was exactly what both Craig and I needed. Plus, I got to fulfill some Matron of Honor duties and help pick out wedding invitations and weigh in on tux choices for their wedding in May, which makes me so happy. We came back recharged and sore from all the belly laughs.

I feel ready for this - as ready as I can be, I suppose. I've packed a bag of comfy clothes and another bag of healthy snacks to counteract the hospital food. I'll be arriving with a little mini cooler and another backpack full of books, magazines, card games, laptop, iPod, crosswords, word searches and various other distraction paraphernalia. I think I'm covered.

Now it's time for what is hopefully a good night's sleep then check-in under "Diamond" at 8 a.m. Maybe there'll be a towel sculpted into the shape of a swan waiting on the hospital bed to greet me.

Sunday, February 21, 2010

Dream Fulfilled for a Borderline-Obsessed Rocky Fan

Cancer, you don't have a fighting chance. "Eye of the Tiger" is putting it mildly. I've eaten lighting and crapped thunder before, and I will do it again with gusto. Whatever it takes, I'm ready for the fight.

Wednesday, February 17, 2010

Lucky Number 7 - Retrieval Day

Today was egg retrieval day and retrieve eggs they did. I said this morning before the procedure that I was confident that there was an egg in each of the mature sized follicles that I had grown with the help of all the heaps of hormones. I just knew it. I had been visualizing them and talking to them and I swear, they were talking back. Well, it turns out I was right and there were three more eggs that had grown along the way that they were able to retrieve. These extra three likely aren't mature enough to be fertilized, but they'll give it a shot, and if not, they'll go to research so that others have even more advanced opportunities in the future.

I was literally beaming when the doctor came to speak with me in the recovery room and told me that we had seven eggs to work with. I was stunned. We had been told that there is a 50% chance that each mature follicle would actually contain an egg, but against the odds, all of mine did. I got all teary eyed and was flooded with emotion - finally, the happy kind. Craig came into the recovery room and was equally shocked and misty-eyed at the news. Great success!

It was worth the 26 shots in the abdomen, the more than half-a-dozen blood draws, the swollen, low-hanging fruit feeling, the back and front cramps. We're so thrilled that we held onto hope and went through with the process. We'll find out tomorrow how many of the eggs fertilized with Craig's little guys and find out a couple days later how many grow enough to be frozen as embryos for us to access when we're ready to try for a family.

The retrieval procedure itself was easy. It was the IV insertion that took a lot of deep breathing and mental strength to get through. It took them not one, not two, not three, but five stick attempts in five different veins to get a suitable IV placement. The nurse tried each arm and kept hitting the hardened scar tissue from the months of chemo without the port. Then the anesthesiologist himself got in on it and he tried my right hand, no luck. Then my left arm, again, no luck, then finally he went from my left hand.

I've already felt like a pin cushion the past few weeks. I have very sensitive skin so my arms are already bruised just from the blood draws and you can see the needle pricks all over my abdomen. I can't fathom that drug addicts to this to themselves for pleasure.

"This is the one, right doc? I can feel it," I said smiling to the doctor as he went for the fifth needle stick as kind of a warning, like, this is ridiculous.

Finally I was ready and we rolled into the procedure room. It was a mini-OR right there behind the exam rooms that we'd been visiting so many times. I hopped up onto the table and had to scoot all the way to the bottom. Ass out and spread eagle. They strapped my legs to supports on either side of the table - glorified pedals that us women have to put our feet in for a gyno exam. Luckily there was a towel covering my unmentionables until I fell asleep, but it was still quite a compromised position. But as I've said before, dignity has been left in the dust a long time ago. I was doing it for the eggs.

Just as the anesthesiologist started to send in the meds, Miley Cyrus' "The Climb" came on over the speakers and I smiled as this song has met so much to me throughout my cancer experience. Cheezy, I know, but to me it's inspirational and was the perfect send-off to unconsciousness.

The procedure itself is very minimally invasive. They go in with a scope, just like the ultrasound scope they used for all of my ovary examinations, but this one has a needle on the end. Through CT-Scan guidance, they aimed the needle at each mature follicle and sucked out all the fluid and the egg into a test tube. I felt nothing and don't feel crampy or anything. I came right out of the anesthesia with no problems and it was straight to take-out at Joey Garlics for a massive chicken parm grinder as I had had to fast from midnight the night before until 1:30pm today. That doesn't bode well for someone who eats every few hours.

One of the nurses at The Center took a liking to Craig and me from our very first visit and has made it her job to be there with us for every part (even though it's not her job - exactly). She even was in on a Saturday doing paperwork in her jeans and came up to our exam room knowing that we were there for an important scan. It was like having a very caring, very thoughtful concierge throughout the whole process. So, it was appropriate that she scrubbed up and came into the OR with me in addition to the OR nurses. She was there holding my hand through the whole IV insertion process and there holding my hand until the drugs sent me into la la land. She sat with Craig through all of his bloodwork, carried my purse around for me while I was in the procedure, then walked us out of the building and asked if she could call to check in on us. I think she'll truly miss our almost daily visits - and we'll miss seeing her.

Everyone there was rooting for us. It seemed that all the nurses knew our story before we met them and they were all pushing for success for us. It really meant a lot and it obviously paid off. I think the young adult cancer card may have helped with the special treatment, but, hey, we'll take it.

Monday, February 15, 2010

The Game Plan

Here's a breakdown of my current understanding of where this crazy road will take me over the next few months. There's lots that will be happening in between these milestones, but these are the highlights. I by no means have it all figured out yet and there are lots of variables on the timing of things, but after a meeting with my new cancer-kicking team at Yale, lots of online research and scans through my spiral-bound "Yale Cancer Center Autologous Stem Cell Transplant Program Patient and Family Resource Guide," this is how things are shaping up in my head:

-Now: More hormone injections, ultrasounds and blood work

-Wednesday, Feb 17
: Egg retrieval surgery, ICSI happens, and we'll know if the eggs fertilize by the next day - they'll incubate those that do fertilize and freeze the ones that grow to 8 cells becoming embryos.

-Thursday, Feb 18-Sunday, Feb 21: The last hoorah - recovering from surgery and trip to Philly to run up the Rocky stairs and eat a cheesesteak then down to Virginia to spend some down time with my college roomie and her fiancee.

-Tuesday, Feb 23-Thursday, Feb 25: Pediatric ICE high-dose chemotherapy begins as an inpatient at Hartford Hospital. It consists of Ifosfamide, Carboplatin, and Etoposide and is often used against recurring lymphomas and those preparing for a stem cell transplant. Because I am "young and strong" they are given me the higher dose high-dose chemo given to children because they can more easily bounce back from it. The chemo infusion will last over three days and I'll be in the hospital for all of it so that I can be monitored for my symptoms, given the correct amount of fluids, etc.

-Back home to recover for approximately two weeks: I'll be receiving shots of Neulasta during the off-time – same premise as the Neup shots I'm used to from the first go-around, but more hard-core.

-Once my blood counts recover I'll go back for a second and likely a third 3-day in-patient ICE infusion with two weeks recovery between each

-Down to Yale for a PET-CT Scan: The goal is that the ICE will have put me into complete remission (no signs of cancer). From here on out, I'll be under the care of Dr. Cooper and his stem cell transplant team at Smilow Cancer Center at Yale.

-One week's worth of Neupogen shots twice a day to skyrocket my blood cell count and force me to create millions of stem cells, the creators of all other cells. Normally there is only 1 stem cell per unit found in our blood as most live in the bone marrow. They are going to pump me up so hard with the Neupogen that the stem cells will be forced to push out into my blood and the goal is to get 5,000,000 per unit. And I thought I had bone pain during ABVD while my marrow was working hard. The nurse told me plainly that I may feel like I'm having a heart attack because the bone pain, especially in my sternum, will be so bad.

-Pending a high enough count, it's time for stem cell collection: I'll be hooked up to an apheresis machine for 2 two 3 hours at a time for 1 to 5 days depending on how quickly my body produces the stem cells. I'll have an IV pulling blood out of one arm; the blood will travel through the apheresis machine which will scan for stem cells and trap them inside of it; then my filtered blood will go back into my body via an IV in my other arm. This is all an outpatient procedure. What they collect will be bagged and frozen in storage.

-One to one-and-a-half weeks to recover.

-High-dose chemo part II: I'll go through six days of another high-dose chemo regimen called BEAM (Carmustine (BICNU), Etoposide, Cytarabine (Arabinoside), and Melphalan). This regimen is so toxic that the stem cell transplant is required as a recovery method from it. A normal body would not be able to rebound from it which is why a new infusion of blood cells is required for survival/cure. I'll go down to Yale to receive BEAM chemo every morning for three hours then come back home and a nurse will come to our house and administer it every evening for another three hours. I'm told that I will have a lot of diarrhea. In the words of my new oncology nurse at Yale, Erin, "I will think that I am going to pass gas, but it is not going to be gas ... ." I like her candid nature already.

-On day 7 of that week, my frozen stem cells will be re-infused into my now blood cancer-free body: Leading up to this we'll be counting up to it as in "Day -6," "Day -5" as I go through the BEAM. It all leads up to the day of the re-infusion: "Day 0," meaning that my body is starting from scratch and as I move forward it is Day +1, Day +2, etc. It's a rebirth in a way. I'll be starting from scratch with no abnormal, mutated cancer cells.

-Two-week hospital/hotel stay: After my stem cells are re-infused will be the most delicate and dangerous time. The effects of the BEAM will kick in and my white blood cell count will literally be down to zero. Added bonus, I'm told that my entire body will smell like a combination of "garlic and creamed corn" as a result of the preservatives frozen with my blood. It will take the stem cells some time to create the red and white blood cells and platelets that my body needs. Stem cells are the "mother cells" which in a way, "give birth," to all of the cells in our body. Half of patients that go through this spike a fever afterward and I will need to be checked every day and receive multiple blood transfusions. Plus, my immune defenses will be nonexistent. Because of this, I will be put up at a hotel that is five minutes from Yale so that I can easily get back and forth. I won't be allowed to be left alone and I won't be allowed to go to restaurants or any public places, just the hospital and the hotel for 12-14 days.

-Lots of antibiotics and scans for a long, long time

Overall, the ICE will be about two months and the stem cell transplantation process takes about 3 months so it's looking like June will be when I begin to get my life back again - new blood cells and all. I'm very ready to get started. I feel like I have a good understanding, at least enough to know the many questions that I still have, and I'm so very grateful that this opportunity for a second chance at beating this cancer exists. There is a 30-50% cure rate after high-dose chemo and stem cell transplantation and after Dr. Cooper met me and assessed my specific situation, he said I have a 65% chance at success for a forever cure. This is the same chance Lance Armstrong was given at the onset of his treatment and look what he's done since. I don't doubt for a second that I'll make it through this and come out stronger and more full of life than I've ever, ever been. It's just going to be one hell of a few months.

Friday, February 12, 2010

The Little Follicles That Could

Something is brewing. Despite all odds, my little follicles have made a remarkable growth spurt over the past two days. We had another ultrasound appointment this morning and low and behold the few follicles that were just emerging during the last disappointing ultrasound have now sprouted and pushed their way toward maturity (with the help of these past two days of hormones, and I like to think all the walking and visualizations I've been doing and all the grapefruits I've been eating).

Craig and I were completely taken aback when the doctor went over the numbers with us and said how much more promising things looked and how pleased he was. We went in there ready to pull the plug on this ordeal knowing that we gave it our best shot. But this time the bright, white room felt illuminated and refreshing. This experience has been nothing less than a roller coaster ride - the kind where your feet dangle unprotected below you.

We now have four mature follicles to work with, each of which could possibly contain an egg. This is nowhere near the dismal news we received on Wednesday that just one was mature with three showing potential. These little guys have pushed right past the 10mm marker necessary. I knew all the swelling and bloating I was feeling had to be a good sign. My ovaries were just a little slow - they're allowed to get chemo brain, too.

This is still of course nowhere near the 10 follicles that they like to see when doing a retrieval, but clinically, the doctor recommends that we move forward and that our chances of getting 1 or 2 embryos to freeze are good. Is the situation ideal, no? But for the hand we've been dealt, we're very happy.

We decided that the fact that these follicles are fighting so hard to grow means that we can't give up right now. Someone (baby Frosty, perhaps?) is trying to tell us something. So we're going ahead with the retrieval - fully knowing that the chance (though smaller) still exists that we'll end up with no eggs or with eggs that don't fertilize through ICSI. But if we don't try then we'll never know, and the last thing we want to do is look back on this chance with regret in the future.

We're prepared for it not to work out and will be completely fine with that. We know that having a biological child is not the only way to be a parent and look forward to the chance to create a family no matter what the "means" of making that family is. Like "Brangelina," we'll have our own United Nations of love under our roof. But maybe, just maybe, there'll be some mini Craig-and-Karins in the mix.

Wednesday, February 10, 2010

Failed Follicles

It's appropriate that it's snowing hard outside our windows. Like a comforting blanket engulfing us in a fresh start. And that comfort is exactly what both Craig and I need. I've never been more happy to have my schoolteacher husband home for a snow day.

This morning we went into the fertility center for an ultrasound and more bloodwork. I came in with such confidence and high hopes after receiving a call yesterday that my bloodwork from the day before showed that my hormone levels were exactly where they should be and that I was responding well to the IVF drugs.

When the doctor inserted his ultrasound probe to check out what was happening with my ovaries, he put pressure on my right side and remarked: "There's one large follicle there; that's unfortunate."

"Wait, fortunate or unfortunate?" I asked like a naiive four year old. He is from Ghana, schooled in England, and has a difficult, muddled accent to comprehend at times, especially when the words he is speaking may as well be Greek.

"Unfortunate," he explained. In short, my follicles are nowhere near the size that they are supposed to be at this point in the process.

I got dressed and we went into another exam room where the doctor poured over the numbers and ultrasound picture with Craig and me as his nurse stood over my shoulder. It was bright - too bright and white - in there and I felt as if I was going to vomit right there on the floor as I took in the news. All the extra estrogen pumping through my body doesn't help matters either.

He explained in a very matter-of-fact style that the hope is for there to be 10 follicles at maturity (16mm). I have one - one - follicle that is 17mm and only two others even emerging, both less than 10 mm. This is the case even though he is giving me four times the normal amount of hormone injections that someone of my age would be given. We were given the hard news that although things looked promising in the beginning, it's pretty obvious now that the 6 months of chemo has aged my ovaries and they are not functioning as they should be.

Now it's just a matter of weighing chance and percentages and our chances of getting any embryos to freeze are looking very, very dismal. As mentioned, normally they like the woman to have at least 10 follicles that they can enter and retrieve from. Of those follicles, only 50% may actually hold an egg. Then of that 50%, only 60-70% of them will likely fertilize and turn into an embryo. We only have 1 to possibly 3 follicles to work with. Do the math. It's not pretty and is overwhelmingly disappointing. They would cancel the process immediately in this situation for any other IVF patient but because of my unique case and the fact that this could be our only shot at a future pregnancy, they would make an exception if we decided that we wanted to take the risk and continue on.

The color drained from both of us as it all sunk in. Craig asked a lot of questions. I took notes. The room got very hot and everything just kind of blurred to me.

We have two more days of hormone drugs to play with. We can't let the one 17mm follicle get any larger as we run the risk of the egg dropping (if there is one in there) so we can only do two more days of meds to give the other two potential follicles the chance to grow to maturity. We'll then go back on Friday morning to see what the progress has been and make the decision as to whether or not go ahead with the retrieval knowing the risk that I could go through the surgery and come out with nothing - not even an egg, nevermind a fertilized embryo.

That would take a huge emotional toll on us, and also a financial one. IVF is not a cheap process - even with donated meds and financial assistance from an organization that helps cancer patients in situations such as ours called Fertile Hope, the process costs over $10K and is not covered by insurance. So, if we go through with the retrieval, which is where the bulk of the cost is incurred, we could drop all that money into something that has very, very, very small odds of being successful. We have a big decision to make.

After explaining all of this, the doctor looked at me straight in the eyes and said: "I'm sorry." He grabbed my shoulder and said "you're going to be okay." and walked out. I couldn't speak and the lump in my throat got too overwhelming. I looked at Craig whose eyes were blurred and had red flush marks arising on his face. The nurse looked at me and just kept remarking how we've been through so much hell. She started crying. I started crying and she brought me a box of tissues. This is the first time I've ever broken done in a doctor's office during all of this. It was just too much. This was the one hopeful thing we had going.

After more shots, more bloodwork for both of us, urine samples from Craig. Up to the check-in area, down to the first floor lab, back up to the third floor, we had to leave to kill an hour because Craig preemptively emptied his bladder before the two-hour cut-off time. We just wanted it all to be over but that wouldn't happen until after Craig had the worst lab tech who stabbed him over and over in the arm until she brashly called out to her colleague for help in finding a vein. He came around the corner ashen and weak at the knees. Like we hadn't already gone through enough.

On our "break" from the tests and shots we went to Quaker Diner for a bacon, egg and cheese and talked things out. While we were weighing the options, two adorably cute little girls were twirling around our booth. One was wearing sweats and mini Ugg boots with a blue, fluffy, tulle princess dress zipped up over her other layers. She was dancing and laughing with her sister saying: "I'm mini Cinderella!" as they galavanted around the diner.

Craig and I laughed and cried at the pain and irony of it all. Now we're home on the couch, exhausted and deflated, trying to figure out what the hell is happening.

Monday, February 8, 2010

Human Insurance

It's been one week since I received the word that the Hodgkin's had relapsed. I can't believe it's only been a week as so much has happened since then. I felt like I have literally been swept up in a tornado of medical terms, doctor appointments, disability paperwork, financial assistance paperwork, sign-your-life away paperwork, faxing, making more appointments, drugs, science, and overbearing overwhelmingness.

At the advice of my oncologist, for my own sanity, and for practicality reasons, I've decided to take a leave of absence from work which started today. So last week was a frenzy making sure that I got everything in order, "brain dumping" to my team, and dealing with the difficult task of breaking the news to everyone that yes, my cancer is back. However, making it so much easier, is how tremendously supportive my immediate co-workers and the extended hospital "family" that I work with are. I know I need to focus solely on making this next course of treatment as successful as possible and that my number one concern needs to be my health and well-being and everyone is standing behind that 100 percent.

I've been a bit aloof this past week, but it's not that I've been curled in a ball crying "why me?", but more that I've had to get my ass in gear and get all of the next steps in order. With the blessing of Dr. Dailey and the new oncologist I'll be seeing down at Yale New Haven, Craig and I have decided to freeze some "Craig and Karin" popsicles - or embryos to be more scientific. On Friday, we started the IVF cycle process, which was overwhelming to digest at first, but now that we're into it, it's going smoothly. This will delay the start of my chemo treatments by about 2-and-a-half weeks, but my medical team was comfortable with that timeframe and very encouraging that we take this step as having a family in the future is so important to us.

The high-dose chemotherapy regimens that I'll be going through are very likely to leave me sterile and put me into pre-mature menopause. So, as an insurance plan, I'm being injected with hormones to force my ovaries to release many, many more eggs than the one that women do each month. Then I'll have a mild surgical procedure where they'll go up there and extract the eggs from the follicles via needle, put them in their little petri nest, then Craig will have to - ahem - "produce," and one of his little guys will be placed directly into each one of my eggs through a procedure called ICSI. (I'd like to request that they play Marvin Gaye in the lab to make this a little more romantic). They'll watch the action and then however many of these Craig-and-Karin combos fertilize and create eight cells toward babyhood will be frozen through cryopreservation and stored for us under careful watch. After I get through this and my body is ready to conceive we'll thaw Frosty and friends and are hopeful for a successful pregnancy with our 27-year-old embryos. If for some reason I lose the capability to carry a pregnancy, the frozen embryos allow us the option to have someone else carry the pregnancy for us if need be. So we've got lots of options.

The IVF process is quite complicated, especially when you're trying to digest the idea of an impending stem cell transplant at the same time. The team at The Center for Advanced & Reproductive Services at the UConn Health Center has been fantastic so far and my endocrinologist is brilliant beyond words. However, I never knew how little I understood about my own female anatomy and never knew how much of this process would be in our hands. We have to do the injections ourselves at home. Craig and I sat through a one-on-one class with the IVF nurse who taught us how to fill the syringes, mix in the powders, switch out the needles, measure the correct cc's, flick out the air bubbles and stab into the skin. I sat there dumbfounded and on the verge of tears. I can't fathom jabbing myself in the stomach with a needle, never mind trusting myself to measure out the right amount of meds and mix what with what. Math was never my strong suit. Chemistry? Forget it. And after so, so, so many needle sticks I've had to endure over this past nine months I'm certainly woozy around them.

Luckily, my husband loves it. He was fascinated by the meds. He picked everything up right away and totally gets it. I told him right then and there in the "training" room that I would be useless for this part of it and that I'd be completely relying on him. After joking that he was going to sneak up on me and jab me in the shower when I had soap all over my face, he assured me that he was confident and that it was the least he could do.

To make matters more exciting, we had to do the first set of injections in the family bathroom at Mohegan Sun casino. You need to inject at the same time every day - a.m. and p.m. - and only have a one-hour window of leeway. We already had plans to go there for my grandmother's birthday and it fell right smack in the time that we'd need to be doing the injections from that point forward. But with plenty of alcohol swabs and Craig's steady hand, we made it happen. One injection of Follistim. One injection of Menopur. Each in a pinch of flab on either side of my belly button. The needle doesn't hurt as much as the hormone meds burn going in, but it's all for the bab(ies).

I can feel my ovaries swollen and I'm a bit bloated and very tired - from everything, I suppose, but other than that feel okay. I haven't grown horns yet, but then again, it's only been three days of hormone meds. I'll be going in about every other day for blood work to check my hormone levels and see when my body will be ready for the "trigger shot" which will release the oocytes then the hope is that retrieval will be scheduled for Feb. 17. We'll start the chemo the following week - more to come on that.

My night sweats have come back with a vengeance soaking through my clothes and wetting the sheets waking me (and Craig) up throughout the night to a puddle of dampness and the stench of my own B.O. To combat this, and the achiness I've been feeling as the Hodgkin's encroaches, I've been prescribed a course of the steroid Prednisone. This will help to slow the cancer activity while we undergo the IVF process and it will help squelch the "b" symptoms I've been having like the night sweats. I'm on a pretty high dose right now but I'll be weaning off it as the week progresses. So far, no side effects from that.

I went into the cancer center today to have my port flushed and that was difficult. I saw all my old nurses and lab techs who were there to rejoice with me when we find out that I was in remission, but this time they burst into tears as they learned that it was back. I got a lot of hugs and a lot of encouragement, but by the looks on their faces, I know that this isn't going to be easy. I've just got to take it day-by-day, one step at a time.

Monday, February 1, 2010

Diagnosis Part Deux

The call came today. My cancer is back. Though the vast majority of cancer cells were killed off with the ABVD chemotherapy treatment, some rogue bastard cells were resistant to it and have started morphing and manifesting throughout my body.

It's a relapse of classic Hodgkin's - again a strong presence of Reed Sternberg cells. This, I suppose, in a way is reassuring because we know each other well. The treatment however is very foreign. As I digest this I'll write in more detail, but it will involve several rounds of high dose chemotherapy requiring hospitalization and an autologous stem cell transplant which will kill every cell in my body, force my marrow to make new cells, trap the fresh stem cells and re-implant those into my blood stream. In short, getting a new, hopefully cancer-free, start.

I'm not surprised. I knew deep down that this was coming as much as I tried to deny it. But now all the hypothesized scenarios are reality and that's not easy to swallow.

I'm scared. I'm apprehensive. I'm determined. I'm feeling strong. I'm feeling sad. I'm worried for my family. I'm eager. I'm in awe that this is happening so fast ... again.