Tuesday, December 28, 2010

Research Study for One

Last week, Dec. 23, was a big day and turned out to be a great day. After the much shocking and regrettable news from a few days earlier that my PET Scan was not the crystal clear gem we had hoped for, the news we got from the doctor on this day was much easier to swallow.

My mom and I took an early train into NYC to be able to enjoy some exploring surrounding what would surely be a comparatively short Sloan appointment. I had a lot of energy (and a huge appetite) due to the daily 100mg of Prednisone I had been taking to calm the Hodgkin's symptoms until SGN-35 could be secured. We meandered uptown from Grand Central and stumbled upon the New York Public Library – an institution neither of us had ever explored. We ducked in and I was immediately in love with the ornate arch detailing, the marble columns and stairs, the intricate and stunning paintings that canvased the rotunda ceilings.

We explored a few floors taking in the massive ceiling to floor windows encased in deep mahogany trim, which shed a cool winter light onto the dozens of people that lined the long library tables with their noses in books and study materials. I ran my fingers along the worn cloth spines of Lord Tennyson, Dickens and Tolstoy – faded jewel colors of scarlet and emerald, the titles calling out in delicate gold lettering. I opened a couple to finger the years-worn pages and ingest the deliciously musty smell that only an old book can emit.

Stunning was the holiday tree in the library's entranceway, a towering figure decorated with artificial birds of all colors peeking out from behind Victorian bows and lights. Behind that we stumbled upon a fascinating special exhibition, "Three Faiths," which compares and contrasts the traditions and beliefs of Islam, Christianity and Judaism by looking at the religion's ancient texts, materials and art. It was remarkable to admire these historic printings from the tiniest of Korans to Hebrew texts complete with engrossing hand painted illustrations. From behind the glass encasements, each told a story about the many sets of hands that wore their covers thin, and whose pockets they traveled the world in.

As much as I desired to park it there for the rest of the day, it was time for us to travel to Sloan, back to reality. After bloodwork and vitals checks, we were quickly ushered in to see Dr. Moskowitz. She was proud and impressed and eager to tell us that everything went through without a hitch and that I was the "perfect" candidate to receive the still investigational chemotherapy drug SGN-35 (brentuximab vedotin) on a compassionate use basis.

The drug is manufactured by Seattle Genetics, Inc. This is the company that is putting it into my doctor's hands, agreeing to provide the drug to me outside of a clinical trial setting. Though SGN-35 is currently being studied in clinical trials at leading cancer centers across the nation (including a very small double-blind placebo study at Sloan), the trials are closed to enrollment or I am not eligible for them. Because of this, my team of doctors had to write an individual research study for me, which was approved by Sloan-Kettering's Institutional Review Board (IRB) and the US Food & Drug Administration (FDA).

My progress will be watched closely by all parties. My response and side effects will be watched extremely closely by the lymphoma team at Sloan as I am in fact the first patient that the institution has secured the drug for on a compassionate use basis. The first patient at the leading cancer hospital in the nation. To further emphasize what a small pool I am in now, all of the nationwide clinical trials that have taken place as the drug has been developed total just over 200 patients that have been treated with SGN-35.

This "distinction" obviously comes as a double-edge sword. I feel incredibly fortunate that this science has advanced to the point that it can potentially put a stop to these rapidly multiplying Hodgkin's cells, but wish I wasn't in such a dire situation. I am immensely grateful for the scientists and researchers who have devoted the research time and dollars to an oft forgotten type of cancer, which is still treated with the same front line drugs that it has been for 30 years. There are not many options out there for those that experience a Hodgkin's lymphoma (HL) relapse as I have and it is about time that a drug of this potential will soon be on the market.

About 8,500 people in the U.S. are diagnosed annually with HL and 1,300 of them die, according to the National Cancer Institute. While the disease can be cured in about 70 percent of patients, that leaves 30 percent uncured. This is not okay and this is why more cancer research and more clinical trial participation is needed.

As fascinating as this all is, I would have been perfectly content living in remission after just six months of ABVD chemo. Every single morning I wake up and run back through the entire journey, still not understanding why cancer chose me and why not just any cancer, but an aggressive subset experienced by only very few in the world – the vast majority of us being young adults with the mean age of 31. Should I feel special or shafted?

As I've been repeating to myself often lately: "You can't change the cards you're dealt, only how you play the game." I am playing my hardest and I will come out on top. There are just many, many, many more rounds than I expected.

This next "round" starts Thursday, the second-to-last day of 2010. Craig and I will drive down to Sloan where I'll receive the first infusion of SGN-35. It will drip into my port for about an hour. I'll then receive it again three weeks later. The chemo has a 21-day cycle. After this second cycle, we will check a PET Scan in hopes that it has blasted out all remaining cancer activity. If not, then more cycles will come.

I of course received the list of "Likely" and "Rare but Serious" risks and side effects per usual for any chemo I've been on. The biggest concern that has come up with this drug is peripheral neuropathy, or losing feeling and function in the arms or legs because of nerve damage. Otherwise, the side effects are not expected to be too bad as the amazing part of this drug is its honing capabilities. Instead of blasting every fast growing cell in the body as old fashioned chemotherapy does, leaving the patient ravaged, SGN-35 goes right for the CD30 cells present in HL, inserts itself there and drops a little chemo bomb right inside the cell. The premise is that it leaves the surrounding cells essentially unaffected (only about 15% of non-cancer cells are hit).

The "Patient Informed Consent for Clinical Research: Treatment with SGN-35 for single-patient use for a patient with relapsed/refractory Hodgkin Lymphoma (HL)" protocol I was given by Sloan to review describes the process well:

"While most patients with Hodgkin's lymphoma respond to treatment that includes high-dose chemotherapy with or without radiation, followed by an autologous stem cell transplant, some patients do not. Some patients with a progressive or recurrent disease after standard treatment respond to salvage chemotherapy (a second chemotherapy treatment). However, relapse remains a major problem, particularly in patients with poor risk disease.

SGN-35 is a type of drug called an antibody drug conjugate or ADC. ADCs usually have two parts: a part that targets cancer cells (the antibody, which is a protein that is part of the immune system) and a cell killing part (the chemotherapy). ADCs can stick to and attack specific targets on cells. The antibody part of SGN-35 sticks to a target called CD30 (a molecule on some cancer cells, including Hodgkin lymphoma and some normal cells of the immune system). The cell killing part of SGN-35 is a chemotherapy called monomethyl auristatin E (MMAE). It can kill cells to which the antibody part of SGN-35 sticks. More than 200 people with cancer have already been given SGN-35 in research studies. These research studies were done to test the safety and efficacy of different doses of SGN-35."

It's the last question on the informed consent packet that really is the kicker and made me chuckle a bit:
"Are there benefits to being treated with SGN-35?
Treatment may or may not make your health better. We do know that the information from this treatment will help doctors learn more about SGN-35 as a treatment for cancer. This information could help future cancer patients."

No one is making any promises, but the potential really is immense. According to a Bloomberg Businessweek article from Dec. 6, SGN-35 wiped out tumors in one-third of patients with hard-to-treat Hodgkin lymphoma and reduced the cancer by half in another 40 percent, a study found.

Here are a couple more helpful links about the inner workings and efficacy of the drug:
To take a break from all the technical jargon and to celebrate the news that I qualified for this drug, my mom and I indulged in some NYC eats and another dose of culture. We cannot remember the name of the Italian restaurant we found on 57th and 11th, but will never forget the food. We stepped in from the bitter cold December wind to enjoy a three-course prix fixe menu, eating such decadence as gorganzola cheese bread, flaky salmon swimming in lemon and butter with the perfect carmelized crust, and classic liqueur soaked Tiramisu for dessert. It was a ladies' lunch to remember. We clanked our water glasses a few times as we enjoyed the perfect people watching perch at our window side table.

Then we lost ourselves in some mind-bending exhibitions at the Museum of Modern Art. We had acquired some free passes, so the fact that we only had a short time to explore didn't elicit admission fee guilt. Days and days could be spent traversing the place. We only saw a very small fraction, but it was awe inspiring nonetheless. We saw Dalis, Picassos, Seurats, Van Goghs, Monets, Chagalls, and works by many, many burgeoning photographers, painters, and sculptors ... even an exhibition of Andy Warhol film clips and a musician playing the piano from the inside out and backwards while walking it through the performance space. The museum was swarming with visitors taking photographs, leaning in to and stepping back from works, speaking languages of every dialect. It was a regular world melting pot of art lovers and my mom and I couldn't have been more thrilled to be there.

We took a brisk walk back from MoMA to Grand Central navigating through the slews of holiday tourists that packed the mid-town stretch. After sipping our coffees and nibbling our baked goods, my mom fell asleep and I delved into my book as the train rumbled us back to the station where my Dad's warm car waited to take us home. We were content, tired, and exhilarated all at the same time. It was almost Christmas after all ... .

Saturday, December 25, 2010

A Very Merry Christmas After All

I only have time for a very brief update. This time, not because I'm in and out of hospitals and procedures, but instead, in and out of holiday parties and gatherings. I much prefer this.

In short, my Christmas wish was granted. SGN-35 figuratively appeared under the tree this year. I am relieved, pumped, hopeful, grateful and eager to get started. The study that Dr. Moskowitz wrote specific to my case flew through the institutional and FDA approval process and all agreed that my case warrants this still experimental drug to be released to me on a compassion basis.

I will have my first infusion of SGN-35 this coming Thursday, Dec. 30. I'll have two weeks recovery, then another infusion, then we check a scan. There is potential that it could put me into remission as quickly as after two cycles. Then, we move right into transplant.

More details to come. Right now I'm just riding a high – a high of holiday cheer, anticipation, and most predominately 100mg of Prednisone steroids.

Best. Christmas. Ever.

Sunday, December 19, 2010

Stunned and Stupefied

It's been a tumultuous past few days to say the least. I'm still grappling with the fact that the cancer is still there and even more so that it's rearing its head in new places ... the little bastard. However, the shock and disappointment has turned into a sharper focus and an even stiffer determination to rid my body of it. The Bendamustine just isn't the drug to do it. We're running pretty low on options, but there is still an option. What I really need is the immunotherapy that the allogeneic stem cell transplant will provide. However, I can't get that until I'm in remission. This is currently a challenge.

This past Wednesday was a NYC family trip a la the Griswolds minus my little brother who is surely studying hard at school. Despite the chilling cold, my parents, sister and I spent the morning walking around the holiday market and watching the ice skaters at Bryant Park. It was beautiful but also mildly torturous as snaking around the artist booths were the incredible smells of kettle corn, hot cocoa, crepes and sausage dogs. Normally this would be wondrous, but I was on a six-hour fast before my PET Scan. A water-only diet equals sheer torture.

We then walked along 5th Ave. admiring the holiday windows down to Rockefellar where we got to see the lights on the big tree and it was there that I left my family to further explore while I hopped in a cab to Sloan-Kettering. There was no need for everyone to sit in the waiting room with me. And, it was a good thing they didn't as the nuclear medicine center was running nearly two hours late. It certainly gave me plenty of time to thaw from the raw cold we had been in.

I drank the red concoction yet again but it actually tasted much better. The nurse alerted me that they no longer use Crystal Light, but instead, a raspberry flavor mixture from Starbucks. Ah, luxury. They started an IV in my arm and injected the radioactive fluid that would illuminate my innards and there I sat reading my book for an hour until it was time to head into the tunnel.

It's wildly uncomfortable in there and for some reason I had more anxiety than I've ever had. I laid on the narrow table and they gave me a blanket to cover myself while I shimmied my pants down past my knees so that my metallic zipper and buttons wouldn't affect things. This is normal protocol, but on that day, I was also wearing a set of long underwear as it was a high of 29 degrees. Pulling all of these layers down to the tops of my fuzzy winter boots while on my back without exposing myself to the tech was an acrobatic feat.

Finally all was settled and I lay with my arms above my head. Thirty minutes without moving. The CT Scan came first where they pushed me in and out of the tube a couple of times to snap photos then injected dye into my IV, which sends an instant flush of heat through the body. It made me feel like I had just wet myself, which I very well could have after drinking all of that fluid. But I didn't. It's a normal reaction.

Normally I just fall asleep once the machine starts whirring for the PET Scan portion. But this time, I wanted out. For some reason, the tube seemed smaller than ever, the velcro straps tighter than ever around my legs, and I wanted to just scream. Suddenly I had to itch everything and had a frog in my throat that I couldn't clear. All I could do was think of Ze Frank's chillout song reprise: "Hey, you're okay. You'll be fine. Just breathe." over and over and over until the narrow table pulled me out of the tube for the final time. Maybe deep inside I knew that in fact I wasn't okay.

I felt even worse afterward. All of the dye and contrast and such made me nauseous on an empty stomach and I just wanted to meet back up with my family. It was now 5:30 p.m. Dark. Freezing, freezing cold. And worst of all, shift change time for cabbies. No one wants to get someone in their car for too long of a trip before it's their time to go home. Finally, I was able to hail one and huddled into its warmth and the kindness of the driver as we remarked about the 99 cent pizza slice joint and how their business plan could possibly work.

I found my family back at Grand Central, which was a bustling mania of commuters. I couldn't even speak to them before I shoved a few bites of mango salsa chicken burrito down my throat. I parked it next to a homeless man and his big garbage bag as he rocked, talked and sang to himself. I did not care in the least I was so hungry and so tired. The train ride then car ride home was peaceful and full of laughter as I merged in and out of fits of sleep and kookiness.

Not so peaceful was my back. It had been in undulating pain in seething spurts for about a week, aggravated even more by the long periods of sitting and stillness. I had taken a sudden turn for the worse after my ultra positive feelings of just a week prior. In the evening especially I had developed a pain at the top of my left leg that would shoot and pulse all the way down the length of it and leave me helpless with no stretch that would touch it. The pain woke me up that night at my parents' house as it had for several nights before. To add insult to injury, I've been sporting a mirror pain on my right upper back for about three weeks now. Again, not constant, but when it comes, it lets you know it's there.

Thursday was spent nursing this and waiting in agony for the doctor to call with the scan results. It's not like that's a difficult thing at all ... . It's not like I took my cell phone into the bathroom with me every time. It's not like I wrapped it up in a towel and balanced it on the tub edge when I just couldn't put off taking a shower any longer. It's not like I walked around with it in my back pocket all day and checked the screen every 20 minutes. Oh wait, yes I did.

It wasn't until nearly 7 p.m. that I got the call. A call I probably could have done without. At that point I knew that it was going to be bad. In my vast experience when I don't hear results until very late in the day that means the doctor has been conferring with his/her colleagues, looking it over thoroughly, maybe grappling with how to break the news. I ran up to Craig's workshop above the garage where he was doing some woodwork and put the phone on speaker so that we could each hear what Dr. Moskowitz had to say. It was freezing up there but it didn't matter because as soon as she said that the scans looked "puzzling," my whole body went numb.

Craig diligently took notes on a pink lined Post-It note while I mumbled back "uh huhs" and "hmmms" back to her. After some beating around the bush, the report was that previously involved lymph nodes had shrunk some in size, but were still showing Hodgkin's activity. In addition, some new hot spots appeared on my vertebrate and left rib. This was stunning and nauseating to hear.

When I told her about the back pain – something I probably should have reported earlier but didn't want to deal with – she was highly concerned. She wanted to make sure that the cancer lighting up on my vertebrate was not compressing any nerves. If it was, I could be left with permanent weakness and irreversible damage to my body. It was decided that I would go back to Sloan the next morning as early as possible and enter through their Urgent Care/Emergency area where I would need to get an urgent MRI. If it showed that nerve damage was occurring, immediate hospital admission and radiation to those areas would be needed. Dr. Moskowitz apologized in advance that it wouldn't be a fast nor pleasant experience, but that it was the quickest way to get immediate scan admission. Again, more nausea and bewilderment.

After I hung up the phone and put away my "professional" brave voice I lost it. There was a lot of crying, a lot of F-bombs thrown. Some kicking and doubling over. Craig even reverted to showing me pictures of puppies but even that couldn't console me. He was also at a loss and visibly upset. I couldn't even function. I just curled up in the corner of the couch and turned on the TV. To my delight, Charlie Brown Christmas was on and I lost myself in the story's innocence.

Seemingly unconsciously Craig and I packed a suitcase in anticipation for a possible long hospital stay and were on the road back to the city, this time via car, at 5:30 a.m. We arrived at Urgent Care by 8:30 a.m. so the craziness had not yet set in. My nurse was so incredibly kind and kept reporting back to me on what the status of things were. We were moved from a curtained room with a bed to a curtained room (or maybe more appropriately, closet) with a recliner. There was a TV and we had the laptop on which we watched movies and stupid online videos. After two hours I saw the ER doctor. After four hours I was transferred via wheelchair to the MRI area of the hospital.

Somehow previous to this, I had managed to avoid the need for an MRI scan (Magnetic Resonance Imaging). It uses a giant magnetic field to align the magnetization of atoms in the body and reveal pictures of detailed internal structures. I was vaguely prepared for how narrow and deep the machine's tunnel would be, but I was not prepared for how loud it was. I had to remove all metal and was scanned with a wand like at the airport. They gave me ear plugs to shove in and once again I had to lay on the narrow shelf. My head was between two foam blocks and they stuck even more foam between those and my temples to make it very firm. I was strapped down, given a pressure bulb to squeeze if I needed help and told to lie very, very still ... no deep breaths, no shallow breaths. When they pulled me out to put in the contrast midway through, I was told to remember not to move then either.

I felt like a Chilean miner being pulled out from underground in that narrow capsule. Afterward, I fact checked my feelings. The MRI machine tube has just a 24-inch diameter. The miner's escape capsule had an inside diameter of 21 inches. My comparison wasn't that far off. But if they could do it then I could do it, squeezed in there with eggshell colored plastic surrounding my entire body just 8 inches or so from my face. It took everything in me to not freak the F out. And I am a petite person with no claustrophobic tendencies. It felt like being buried alive.

The sweet accompaniment to it all was the pounding of jackhammers all around me in a jarring and inconsistent symphony of sound. The ear plugs were a joke. The magnets were so loud as they spun and moved and I could actually feel the magnetic force field enveloping my body. It was one of the longest 40 minute snippets of my life. And I had thought first period high school pre-calc was bad.

But I made it through ... snowflake print Johnny over skinny jeans and all. As is everything else, it was only temporary. My biggest concentration during it was remaining as still as I possibly could for fear of messing up the picture and having to repeat the scan. I was wheeled back down by a sweet, sweet man named Richard to the pod closet in which Craig was waiting.

Another two hours and the doctor came to tell me that the radiologists had read the results and that things looked clear. There was no immediate danger to any of my nerves. It's likely that the pain I've been experiencing is from shifting disks in my back pinching nerves intermittently. It seemed that the doctor and the nurse were just as excited as we were and were eager to expedite our discharge.

Once again, I hadn't been able to eat and Craig had only picked at the breakfast box we had been given. We both randomly wanted Pizzeria Uno so badly and for some reason thought that getting off a mall exit off of I-684 on the Friday night before Christmas was a good idea. We sat in gridlock adding another hour to our ride but the deep dish pie and Caesar salad was so worth it. We slept very hard Friday night when we finally made it back home.

While all of this has been happening, my oncologist has been writing an individual study specific to my case in the hopes of obtaining a yet-to-be FDA approved drug on a compassionate use basis. The drug is called SGN-35. It's a targeted missile drug, unlike normal chemotherapy and different in its makeup than anything I've ever had before. It actually seeks out and destroys the type of cells known to exist in Hodgkin's rather than just arbitrarily attacking all fast-growing cells in the body.

SGN-35 is a hot ticket drug that was all the rage at this year's American Society of Hematologists conference and in Scientific American magazine. Dr. Dailey, Dr. Cooper, and all the doctors at Sloan have mentioned it to me as the next step should the Bendamustine prove ineffective – which apparently it has.

The drug is a huge breakthrough that's very close to being a mainstream treatment for Hodgkin's patients. However, it's not there yet and there are no open clinical trials anywhere in the nation that I qualify for. The hope now is that the pharmaceutical company that possesses it will have compassion for my situation and release it into the hands of my doctors. Right now, Dr. Moskowitz is diligently making my case. And here I sit doing what I do best ... waiting.

On Thursday, the day before Christmas Eve, it's back down to NYC to find out the verdict and hash out a "plan" (a word I use only in the loosest sense possible).

Friday, December 17, 2010

Post-Scan Update

I had my much anticipated PET and CT Scans yesterday. Last night around 8pm, I got a call from my Sloan oncologist with the results. The later and later it got to be in the evening, the more I knew that it wasn't good news. My scan was not clear.

The areas that showed as hot spots (denoting likely cancer activity) in my scan two months ago have shrunk some, but are still lighting up with activity. What's more concerning is that there are some new hot spots on the vertebrate of my spine and on my left rib.

I've been experiencing tremendous pain in my very upper left leg with shooting pains all the way down my leg on and off for about five days now. I also have a lot of pain and inflammation in my upper right back, which has lasted a while.

Because of these symptoms and the hot spots on the scan, my doctor ordered an emergency MRI so that we can immediately assess what is going on. So, Craig and I drove back to Sloan today and now I am here in the urgent care center waiting to get the scan done. The MRI test will be able to more accurately reveal what is happening and will be more definitive as to whether it is cancer.

If in fact it is cancerous lymph nodes pressing on nerves, I'll be admitted today and we'll start radiation to those spots immediately as permanent weakness and irreparable damage can be caused if we let it grow. If it is some fluke, then hopefully I can go home today.

Whatever it is, I'll find out by later this afternoon. I'm deeply disappointed that the Bendamustine isn't working as expected. I'm very tired and very anxious, but we're keeping entertained and holding onto hope.

Monday, December 13, 2010


I was listening to the introduction of Randy Pausch's "The Last Lecture," a speech I've listened to many times in my pre-cancer life, but this time it made me burst out laughing. After he explains that he has approximately 10 tumors in his liver and his doctors told him that he has three to six months of good health left, he follows up with: "If I don't seem as depressed or morose as I should be ... sorry to disappoint you." He then proceeds to pump out one-handed and clap-between push ups and demonstrate that he's probably stronger than most anyone in the room. Unfortunately, he's since succumbed to his terminal cancer, but it's obvious that he blew away perceptions and expectations along his journey.

People – friends, family and medical staff alike – constantly say to me: "Well, you look great," or if it's over the phone, "Well, you sound good." And I always wonder what their expectations were. Then I realize that on paper, yes, it makes sense that for what I have going on in my body and how aggressive this cancer and this treatment is, I should look like an ashen walking corpse, but that is simply not the case.

Despite how widespread cancer is in the world, there seems to still be such a stigma around the word that elicits a lot of fear and mental images of people spending every waking moment vomiting, weak and morose dangling from their last thread of life. When in fact, so many people are living, yes, living with cancer. Living despite the disease in their body.

Anytime I'm in a crowd at a sports game or the mall or at a play, I am always wondering how many other cancer survivors/fighters there are surrounding me that I would never be able to pinpoint. We don't all look alike. We don't all feel the same way. The word "cancer" is just far too general to describe the intricacies and uniqueness of the different forms that it can take. There is no one picture of what a cancer patient is supposed to look like.

That's the funny thing about cancer. It can wreck havoc internally but not show anything outwardly. How can I fault anyone for not knowing what to say when they see me for the first time in a long time? Or, when I drop the cancer bomb because they have no idea what's been happening in my life. There is no "right" thing to say.

Saying anything is better than saying nothing at all, even if it's just saying: "I just don't know what to say." To again quote Randy Pausch, as his father always told him: "When there is an elephant in the room, introduce it." I try to be sure to acquaint people with my elephant when I can see they are struggling with whether or not to acknowledge the figurative animal for fear of upsetting me. It doesn't upset me. I know it's there and I appreciate when people express their empathy and support. But pity? Now that's something I don't appreciate.

I laugh because despite how curious it is for me to hear, I catch myself saying to other patients: "Well, you look fantastic!" all the time, because you know what? It's true. And maybe it sounds trite and maybe it can be perceived that it's discounting what they're going through, but I think any cancer patient can benefit from a little ego boost, especially when we are hurting so badly on the inside. No matter what might be happening biologically, the spirit still shines through brightly. That is something that can't be overtaken by sunken eyes and pale skin. Sometimes it takes someone else to point that out.

I read an excerpt by writer and performer Jenny Allen, author of the one-woman play: "I Got Sick Then I Got Better." She was also a patient at Sloan-Kettering and was featured in the hospital newsletter. I don't agree with everything she says, but I think it's refreshing and extremely brave for her to speak about what it was like for her to hear the sometimes profound, sometimes odd things people chose to say to her and about her resulting reactions, which totally depended on her mood that day – something I can completely relate to. Talk about acknowledging the elephant in the room.

Cancer patients aren't just the feeble, bald, hopeless beings that Lifetime movies are made of. We're still people. We're still living. And yes, damn right, we can still look damn good.

Tuesday, December 7, 2010

There's Reason to Believe

I'm feeling great – better than I've felt in a very long time. It's difficult to explain, but there is a very distinct feeling in my body when the cancer is lurking. Right now, I am extremely confident that nothing is there and that this PET Scan will absolutely be clear. That's a real nice feeling.

I feel the clarity mostly in my chest. I'm able to breathe more deeply without any of that dull ache. The lymph nodes in my neck are nonexistent and the undulating pains in my internal nodes have waned completely. I repeat, this is a real, real nice feeling.

My energy is good – comparatively – and I'm feeling very strong and capable. I'm actually more eager than apprehensive for this upcoming scan. To have confidence right now is such a cherished gift. There was a while there where I began to be doubtful, where I began to let the frustration and fear take over and give in to the fact that the cancer just would not go away. I no longer feel that way.

I have complete confidence that I am in remission and that this upcoming allo transplant will be a massive success. The doctors will write about me in their journals and speak about me at their symposiums not just because of the rarity of my case, but because together we proved that it was conquerable.

I not only have the confidence in myself that I can and will get through and far past this, but also confidence that my medical team is doing the absolute best possible job. Together, we are creating the utmost perfect conditions for success. I've been listening to my body all along and it is now at the point where I can actually physically feel that my body agrees, wants this, and is open and ready.

My mind and spirit are happy to welcome the body in. These physical feelings have done a tremendous amount for my mentality and emotional stability. I'm enjoying every single thing I am doing each and every day to the absolute fullest and am not struggling with discontent. I'm more focused, more determined, more aware and connected than I've ever been in my life. The cells are aligning and soon will be dancing together again in harmony. We've got a long road still, but I'm fully ready to start walking it.

"Rise" by Eddie Vedder from Into the Wild:

Saturday, December 4, 2010

Bendamustine Cycle 2 Recovery

It's been a week-and-a-half since treatment and I'd say that things have gone relatively smoothly. I have been functioning much better than I did at this point after the first cycle. That could be for a lot of reasons: the dose was reduced, I had seven weeks to recover, there aren't the cancer symptoms to deal with, and I know what to expect.

Thanksgiving was a bit of a blur. It was so nice to be surrounded by family, but it felt like I was wearing beer goggles and moving in slow motion. I don't really remember much of my conversations. I was very woozy and very tired and incredibly chilled the entire day despite wearing two long sleeves under my sweater dress.

However, I picked at more food than I expected to and made it to two out of the three family Thanksgivings that we were scheduled to hit up. Albeit, I did a lot of napping in the couch corner wrapped in a borrowed Tinkerbell fleece at gathering number 2 at my Aunt and Uncle's house. Despite what the embroidery on the pink fleece says, I was certainly not feeling "Flirty." Too chemo dazed to be behind the wheel, my brother drove me and my car to my parent's house where I slept on the recliner, then the couch, then their bed under many blankets with the heat blasting, until Craig returned from Thanksgiving number 3 to pick me up and take me home. I'm lucky to have so many escorts.

The next evening was my 10-year high school reunion. I had been looking forward to it for months and had promised myself that if I was in the state I was going to be there. We had a great graduating class full of many fun, intelligent, caring people and I wanted to be a part of the celebration. I slept the entire day in preparation and somehow got myself dressed up and there. It was so fun, as always, to spend time with all of my close friends and a trip to catch up with people I haven't seen in forever. I had to sit down – a lot – and every tissue in my body was achey and wildly sensitive to the touch. I felt like a walking bruise but I balanced and made the rounds – on heeled boots no less. I was very proud and very happy that I made it there and then equally as happy to be back home and in bed.

Every day since has been an improvement, but it wasn't until yesterday that the body tissue aches and bone pain subsided. The tissue aches are something unique to the Bendamustine for me. It's like my tissues are filled with fluid and therefore very bloated, swollen and inflamed resulting in a lot of tenderness. No bear hugs were allowed.

The Neulasta shot also really did me in this time. It takes a lot more work for my damaged bone marrow to create new blood cells these days and I could physically feel how hard it was working. My bones, especially in my upper back and hips, were constantly pulsing in pain from the inside out. At night especially all I could do was find a position that was minutely comfortable and not shift from it. To move my bones was very painful. The aches have woken me up from sleep several times this week and that's tough to take when sleep is so hard to come by.

Each morning when I wake up I feel as if I'd stepped in as a stunt double for one of the Bourne films and was dropped from a high rise building window to land flat on my back on a rusty dumpster lid. The hour of 7:30 to 8:30 a.m. is usually spent laying there trying to get my bearings and get my strength to get out of bed. The good thing is that each morning the height of the window from which I fall has been reduced. This morning was equivocal to only a slip on the ice.

All that said, it really is an improvement from last time. The bone pain has subsided. The figurative body bruising is gone. The aches are more sporadic and much less intense. Right now all I'm dealing with is red raised bumps on my face and random dry skin patches everywhere – one right on my bottom lip so it looks like I lost a fight. This happened to me last infusion as well. Apparently Bendamustine wrecks havoc on my skin. And then there's the fatigue ... but what's new?

The holidays help for sure. I freakin' love Christmas. I could barely lift my right arm last Sunday, but darn it, we went out and cut down a fresh white spruce and covered her in white lights and mementos. I love, love, love the smell and watching the glow each evening. Saturday we made it to our town's holiday festival and bundled against the cold took in a fantastic fireworks display set to the intense carols of the Trans-Siberian Orchestra. There are lots of holiday parties and outings in our schedules and everything is made better by the Mariah Carey Christmas album.

Mentally, I'm in a very happy place right now. Physically, I'm getting there, one day at a time and am just so, so grateful that I'm still able to yoga, to hike, to breathe in this incredible December air. There is a lot of healing happening every day.

December 15 is the next big milestone: PET Scan day. We'll see if this Bendamustine has been doing its job. The hope is for an all clear, no cancer report. That means on we go to transplant – new year, new immune system. While all of those logistics happen I'll get one more cycle of Bendamustine chemo, currently scheduled for Dec. 23 and Dec. 24: Ho! Ho! Ho! Looks like I'll be putting the beer goggles back on for Christmas.

Monday, November 29, 2010

Bendamustine Cycle 2

It was last Monday at 6:30pm that the (212) area code came through on my phone. New York. Craig and I were cozied on the couch already beginning evening news watching routine. I conceded to the fact that I wouldn’t be getting Bendamustine treatment the next morning at 8am as scheduled. That day my local bloodwork check revealed a platelet count of 65. It had risen only 8 over the last five days. How could they expect it to jump to the required 75 in just a day?

I was wrong. My nurse, Brynn, called and said that the team still wanted me to come to the Sloan clinic the following morning. She said that I would think she was crazy, but that she was passing on the word exactly from Dr. Moskowitz’s mouth.

“We got your bloodwork today and see that it’s still low, but we’re going to try something,” she said. “I’m being for real. Right before you get your finger pricked we want you to jump up and down for 15 seconds.”

I told her that yes, that was random, but that I’d do it for sure; that’d I’d do handstands, cartwheels, jumping jacks, whatever it took to be able to get the treatment that I needed. She explained that some of the oncologists had discovered that getting the heart rate up immediately before the blood is drawn can have an endorphin effect which can spike the platelet results. The act can shake things up and force the cells to multiply – if only temporarily. It had worked for another woman on my study and we were hopeful that it would for me to.

So, we grabbed our now nearly permanently packed bags and were on the 7:57pm train to New York City. We didn’t want to deal with a 4am wakeup the next day and luckily had not yet canceled our Miracle House reservation.

Tuesday morning I pulled on my jumping boots and we made the trek across Manhattan. While waiting for my name to be called, Craig pulled me into a side hallway. Little did I know, he had queued up the Rocky theme and was very serious in his coaching role. “Gonna Fly Now” played through his iPhone and he encouraged me to start bouncing. I did a combination of awkward jumping jacks and aerobic steps all the while knowing patients, doctors, nurses could turn the corner at any moment to find the Richard Simmons worthy scene we were creating. He had me going until I broke a sweat and had to strip down to a t-shirt. I was pumped.

Then we heard my name. I explained to the lab tech that I needed to do a few more jumping jacks while she laid out the needle, gauze and Band-Aid.

“Oh sure; whatever it takes,” she exclaimed excitedly and began to dance and laugh right along with me.

I upped the 15 second recommendation to 1:30 seconds watching the red second hand tick as I flayed about then plopped into the chair for the finger prick. The tech was ready with the needle and vile.

Craig and I waited anxiously under the blinding white lights of the doctor’s exam room.

The door opened slowly and in popped a red faced and beaming Dr. Moskowitz who proclaimed: “Happy Thansgiving! You’re getting treatment!"

We all cheered like goofballs as she read the lab results with the platelet count of 78. Brynn poked in to give a yelp as well. Dr. Moskowitz then revealed to me that had it taken one more day for my platelets to reach 75 I would have had to been pulled off the study. I don’t even want to think about what that would have meant as this is the drug that I need. There are very, very few – if any – other tricks in the bag. I am glad that I didn’t know this tidbit beforehand. That was a very wise omission of info on her part as I had been uneasy enough about being off treatment for seven weeks.

It was so odd to want something so desperately that I knew would leave me hurting so badly. It was a massive relief for all of us. Besides that nagging desire to live, scientifically, the team at Sloan of course wants me on the study so that they can watch me meet success, so that they can prove that this course of treatment works and so that they can help other patients in the future. It’s strange to think of myself in these terms and of course these are not terms ever spoken by my medical team, but I am a rare scientific specimen. I am in a clinical trial for a reason. They need my data. They need to study me. I need to live and I am putting my life in the hands of this medical science. I am more than willing to do whatever it takes and hope that everything that I am going through will make it that much easier for the next person.

The chemo infusion itself went without a hitch. Dr. Moskowitz ordered a slightly reduced dosage, which the study allows for in the second round. The Benadryl they require made me groggy and woozy but the 40 minutes went quickly.

Riding the usual steroid induced high, Craig and I did some exploring in the city’s design district. We spent hours perusing through the visual wonderland that is ABC Carpet and Home taking in floor after floor of creative, artistic interior décor. Every single thing in that place is a conversation piece in and of itself. Then we snacked on rock hard NYC pretzels from a cart and stumbled upon a huge open-air holiday market in Union Square. Under every tent was a different artisan with something mind bending, intriguing and unique to explore.

Suddenly the steroids wore off and the Bendamustine in. My legs started to swell and give out and my head became very heavy. It was time for my prince to escort me “home.” Both chilled and flushed from the long day I burrowed into the bed covers in our Miracle House room to indulge in a much needed before-dinner nap.

We then gathered with a group of nearly 20 other patients and caregivers staying at MH that evening for our biggest group dinner yet. We all ducked out from the cold November air and into the reserved tables at Pom Pom diner. We shared a booth with a fascinating woman from Nebraska who is a calligrapher, an educator and an arts and books lover among many things. We had very much in common, and it was comforting to hear about what she’s learned and experienced through taking care of her ailing father – a retired English professor. There were many others there too. Some knew already that they would remain in the city through the holiday. Others were packing up to make the trek home to their families with plans to come back for their next treatments, procedures, and adventures.

On top of the post-chemo symptoms, a cold had set in and my nose was continually running just as much as I was sneezing. Sleep was hard to come by and my nose had become raw from the continual tissue rubbing. But it was up and at ‘em early again on Thanksgiving Eve for infusion number two. My ever- patient husband waited away the hours with me as my chemo was mixed until I was finally “served.”

The train ride home was packed wall to wall with people, baby strollers, suitcases, and shopping bags. Every seat was taken and even the vestibules were full all the way along the New Haven line. We were fortunate to have gotten to Grand Central early enough to get a seat of our own. It was a beautiful thing to watch the human dynamics. Despite how cramped it was, I witnessed so many people helping to hoist others’ bags on the racks above their heads, giving up seats for the elderly, helping women with strollers to navigate between the cars. It made me smile between sneezes and chemo flush waves to think about who and where they were traveling to and what it would be like when they got there. Would their Thanksgiving table be a Turdukin or a Tofurkey table? How long had it been since they’d seen their families last? Were they looking forward to or dreading the reunions?

Despite how awful I felt and how desperately I wanted to be curled with Sammy on my couch, my chest was filled with a palpable fullness of contentment and astounding gratefulness to have my husband’s shoulder to sleep on and so many more loved ones to look forward to sharing the holiday with.

Sunday, November 21, 2010


It is something to say when you just don't know what to say, states Mary Poppins. So I am saying: "Supercalafragalisticexpialadoshus." It at once satisfies the craving for an expletive and for utter nonsense. The situation I'm going through is nonsensical. There are no answers and there are no words, so I'm saying this one loud and don't care if I sound precocious.

Turns out that my mom and I enjoyed another mini vaca rather than a treatment ordeal in New York City. This time: a 45-minute drive to my parent's house; a 40-minute drive to the train station; a two hour-15 minute train ride; a 20-minute taxi ride to drop our suitcases at Miracle House and a 35-minute taxi ride across Manhattan to Sloan-Kettering for my appointment – all the while hopeful that my doctor's visit would be followed by chemo treatment.

However, the timing just still wasn't right. A finger prick blood work report revealed that my platelets still hadn't risen high enough to be able to receive another chemo dose. The number needs to be at 75,000. I was at 56,000. My oncologist kept expressing how badly she felt that I made the trek all the way in, but that she had been optimistic even after receiving the blood work report I had gotten locally the day before. I was at a count of 50,000 then, so at least I am on the upswing. She had wanted to see me anyway and I had wanted to see her as well. It was good to check in and talk some things out even though there was no chemo to be had.

The plan is to try again next week. This will now be week 7 of recovery. I'll have my blood work checked locally on Monday and if my bone marrow has done its job over the weekend, I am scheduled for chemo in New York on Tuesday and Wednesday. If my counts haven't hit the mark by Monday, we'll check again Tuesday and aim for chemo Wednesday and Friday. Sloan-Kettering doesn't administer chemo on just two days a year: Thanksgiving and Christmas, so they'll have to get an exception approved for me to go off of study protocol and have a day between treatments if the latter chemo plan is the case. I don't yet know what this will mean for turkey day with our families.

In talking with Dr. Moskowitz, it turns out that I am not alone in this conundrum, that several people on the clinical trial are experiencing the same challenge of slow platelet recoveries. In fact, she said that if they could rewrite the study with a smaller dose of Bendamustine with the data that they now have, they would. All of the 29 people on this study with me have been through many, many therapies, most also had failed autologous transplants so all of us have pretty wary bone marrow. With this said, the plan is to get a reduced dose for the next infusions ... hopefully this will lessen the recovery time at least a bit.

We left Sloan and decided rather than heading back to CT, we'd make the most of our time in the city and spend the night anyway. We did lots of people and bright lights watching in Times Square as we waited in the TKTS discount ticket line and came out with tickets to Mary Poppins on Broadway. After a nap back at Miracle House and a dinner of decadent savory crepes at a French cafe, we settled into the New Amsterdam Theatre for the production.

Mary Poppins was the absolute perfect choice – a total escape into colors, special effects, dance numbers, and fantastical, whimsical wonderfulness. Call me cheesy but I love that over-the-top showmanship only Disney can produce. We were both so in awe of all of the surprises and the amazing imagination behind the show. Rather than thinking about how the cancer has yet another week to grow before getting a chemo whack, instead, I was able to whilst about jumping into a painting and dancing with statues, about tap dancing chimney sweeps that serve as lucky guardian angels, and about the premise that "anything can happen if you let it." I lost my own worries in the music.

After a brisk walk consisting of lots of humming, we slept hard. We joined a group of others from Miracle House for breakfast, one of which was a man in his late fifties facing the premise of a bone marrow transplant to treat his leukemia. His match is his twin brother in India who just suffered a massive heart attack. We spoke a lot about the transplants I've had and what got me through. He was so grateful and told me that he was so scared before, but that now he had hope after seeing me and how well I looked and how upbeat I was. I told him that attitude is everything and that he will get through it, too ... even the bad days. I was only paying forward what others have done for me by sharing their stories. Those Miracle House breakfasts are about so much more than pancakes and eggs. I look forward to seeing him again this week.

We decided on a later train to give us time to geekily wave behind the set of the Today Show, see the big tree being set up in Rockefeller Center, get suckered by the vendors along the touristy streets, marvel at the beauty of St. Patrick's Cathedral and wander from one beckoning retail window scene to another all the way down Fifth Ave to Grand Central.

Cheeks rosied from the November air and calves weary from all the walking, the train ride home was spent nodding in and out of slumber. The track rumbles lulled us to sleep ... a sleep interrupted intermittently by the garbled, incoherent sound of the conductor's voice over the speakers.

Wednesday, November 17, 2010

Hesitantly Ready

Dare I say it? Tomorrow morning I am scheduled, yet again, to get this long awaited second round of Bendamustine chemotherapy. I am now six weeks past the first treatment ... off treatment two weeks longer than expected. I think it's time to induce me.

In all seriousness, I will go to get my blood count levels checked locally later this afternoon to verify that my platelets have climbed high enough. Last week that was not the case, so I've been working on platelet building all week long. I'm not really sure what that consists of, but it's required a lot of rest, plenty of good food and an incredible amount of patience (not always easy to come by). Let's hope it worked.

If so, it's by train we go back into NYC. This time with my mom as my companion. Two ladies conquering the big city. With the help of the steroids to balance out my Thursday and Friday treatments, we're hoping for a couple days of museums, art attractions, shopping and a Broadway show. But we're flexible enough to know that the next couple of days may consist of watching movies in bed back at Miracle House. My post-treatment capabilities are always variable so we'll determine our day's activities as my body dictates ... no expectations. It's without plans and expectations that room is left for the most memorable of happenings to emerge.

To again quote the poet Lady Lee:
"I'm taking down the shelf of expectations
Crowded by imitations
I learned that now I can.
I'm letting go little by little,
But I am. "

Friday, November 12, 2010

Sometimes the Rug Comes Out From Under

Everything that I had worked my whole life for had come together. Young, spirited, excited, carefree – taking on the world. My world. At 26 years old, things had fallen into place. I had a beautiful home, married my high school sweetheart, adopted a crazy loveable dog, and was thriving in my career. I think a lot about what happened. What signs did I miss? What could I have done differently? I try so hard not to think about these questions ... and the worst offender, the "why" because I know there is no answer.

The definition of insanity is banging your head against a wall over and over expecting a different result. No matter how much I bang it I'll never know why this happened to me, what I did to deserve this, and why it happened now, in my prime, with so much going for me. Before I worried about whether the work day was deserving of a "power suit" and looked forward to coming home on Fridays and having a beer and playing corn hole in our front yard to "de-stress" from the week. Now I worry every day about what will happen next and if this disease is going to kill me. I had no idea what stress was before this.

I am so young. It hurts so deeply to think about what a sharp twist of fate I've endured. I literally had the world at my fingertips. Now at 28 years old I'm still grappling with this giant and it is only growing bigger and I am only losing more control.

I am not naiive to the fact that I have been very fortunate in my life, but things didn't come on a silver platter and that is why I am so appreciate it all so much. I built this life and formed amazing relationships with the people who have helped me to get here. To think of this foundation being pulled out from under me and for all of this to end is too much to bear at times. I've written these words before but it scares me more than anything to think that my life was so beautiful and perfect that it wasn't met to last ... that what some people seek their whole lives to find was given to me in my first era and I've used it all up.

For my entire life I have been a hard worker. I took homework seriously from grade school through high school and was always very hard on myself - pushing and pushing to do my best. I studied very hard in college and am incredibly proud of my degree. I rejoiced at the opportunities I had in the three career jobs I've held since school and worked second jobs waitressing tables and carving meat to be able to save and make ends meet. Now it pains me greatly to lose ground, miss opportunities, to say that I am home collecting disability payments. It makes me sicker than the cancer does.

Craig and I endured a long-distance relationship for five years – across states, across the world holding together visit by visit. Finally, we could be together every day. We married and bought this beautiful three-bedroom house with the intention of filling it. Now those extra bedrooms sit vacant with the doors closed so as to not waste the heat. My fertility will no doubt be gone after this next intense procedure if it is not already. My thoughts are often with the three embryos cryopreserved and waiting for when my body can hold them. I worry that my body will never be a safe place for them to grow in.

Don't get me wrong. There are many wonderful things have come out of this experience and my life is by no means a pity fest. It's rich and full.


At that very moment, while keying those above words on Tuesday afternoon, an unexpected car pulled into my driveway and I put down my laptop. It was my mom and sister. If I thought I was having an emotional day earlier, their arrival really opened the water works to free flow. I tried to compose myself but realized it was a lost cause when I caught a glimpse of my smeared, red blotchy face in the mirror. It's very, very rare that my family sees me cry as I don't like to upset them by being upset, but there was no hiding it.

I opened the door and said out loud:

"What are you psychic? I'm having a bad day." and just started bawling crying.

My mom hugged me for a solid while, then my sister, as I shook in each of their arms.

"Oh no ... little Karin," says my sister as she squeezed me until it almost hurt.

"We decided to come over and plant some tulip bulbs so that you can have something beautiful to look at while you heal this spring," said my mom.

After a couple more teary chokes they were outside digging 44 holes in the soil along the back of our house and I was inside making them grilled cheese and tomato soup. We didn't have to dwell and discuss it too much. They knew why I was crying and upset. I was frustrated and scared and tired, tired, tired of everything ... the same things they are feeling.

This is why I survive. This is why I have made it this far in essentially one piece with my wits about me and my perspective still on the sunny side. Without fail, as soon as I'm about to give up, a much-needed voicemail is left, a funny card arrives, a stranger in Times Square gives us free tickets, Craig comes home with a surprise dinner cooked by a coworker, or my family shows up with tulip bulbs. Knowing how much people care about me gives me that strength to fight harder. Sometimes knowing how much I care about myself just isn't enough. Knowing that I have a place in the world, that without me, there would be a void, is quite a motivating reality.

My family is not a serious bunch and we're all a little crude and unique. My mom is not the kind to coddle and coo over me. She'll let me be sad for a bit then usually say something like: "Alright Choppy, let's go. You're fine." There are no long, deep discussions and 'woe is us' complaints. For this I am so grateful. Mooshy, mushy is not my style. I hate for people to fuss over me like I'm an invalid. Soon enough we were eating and chatting then popped in the Christopher Guest movie Waiting for Guffman. My mom snored through it but my sister and I laughed out loud. The whole out-of-control emotional raucous of the morning was all but forgotten except for how greatly tired it left me, but this time it was a good, warm worn-out tired, one that meant that I had gotten it all out. And that takes work.

Monday, November 8, 2010


I should be recovering from Bendamustine cycle 2 right now, but I am not. Apparently, I am still recovering from Bendmustine cycle 1, but did not find this out until Craig and I traveled all the way into New York City expecting me to get treatment.

After an hour drive south, we stayed with Craig's aunt in Trumbull Wednesday night who then graciously escorted us to the Metro North train station to get us into the city the next morning. We took an early 90-minute train in so that we could make it from Grand Central to Miracle House to drop our suitcase and get back across Manhattan to Sloan-Kettering to make a 9:45 a.m. appointment with the oncologist. Needless to say all of the packing, schlepping, car ride, train ride and taxi rides was exhausting.

I had my finger pricked for a CBC (complete blood count) check per usual then was ushered in to meet with Dr. Craig Moskowitz, as opposed to my usual doc, Alison Moskowitz (no relation) who was rounding last week. His fellow came in and checked me over and I recapped the myriad
symptoms I'd experienced over the three-week recovery period. Then the doctor came in and we did the same. He was obviously wicked smart and incredibly breezy about everything. He didn't feed into the need that Craig and I have to try to control everything about my care: Will we
do another round even though I have chest swelling? Will the transplant team be ready as soon as I have a clear scan? What about trying another drug with a shorter recovery period?

I think he got quite a kick out of us, this young question-firing couple. The doctor looked me straight in the eye, took a deep breath, smiled and said: "You know your body best. Don't worry. We know what we're doing and we're not going to let anything happen to you." It was such a simple reminder to just breathe and to realize that I am in one of the best places in the world to be treated at and that I am working with the best of the best medical staff. He, in particular, has a huge reputation in the lymphoma world and authored the study that I am on. I was a bit humbled.

He ordered the chemo and Craig and I headed to the chemo suite waiting room where we settled in for what we knew would be a long wait after our experience the previous month. We had DVDs, games and books at the ready. But before we could even start up the laptop, one of the
session assistants came over to me and whispered that I was wanted back in suite 1, that I wasn't going to be receiving treatment.

My heart sank and I was in complete shock, immediately filing through what possibly could have happened, a slight terror shuttering through me. I honed in on the fact that the little finger prick I had received early in the morning had elicited enough blood to sufficiently soak through the layered gauze and eek through the Band-Aid that was wrapped around it. I came to the hypothesis that my platelets must be very low. Damn it.

We got back to the suite and were immediately grabbed by an unfamiliar nurse who pulled us into a teeny room full of files and computers and told us to wait for the doctor. I heard her say to someone outside the door who was questioning our presence there: "It's just for a minute. It's a very special circumstance." Craig and I looked at each other with the panicked: what the hell is going on? look.

Dr. Moskowitz popped his head in with the update: "Your platelets are too low."

Ah, I was right. Platelets are the blood cells that help blood stick together and clot. If there are not enough of them present in my bloodstream and I were to cut or badly bruise myself, I could bleed to death. He explained that my count registered at 45 K/mcL (reference range 160-400 K/mcL). On the study, it is written not to treat someone under 75 and he explained that even if I wasn't on the study, he would never give a patient another round of Bendamustine with a platelet count under 50. No chemo for me. I wouldn't be able to get a platelet transfusion either. What I needed was time for my numbers to recover naturally.

"We'll try again next week," he said through a smile and told me to get my blood counts checked locally the day before and have them faxed. As instructed, I had been doing this once per week for the three weeks prior, but my counts had held and apparently none of us imagined that I'd suddenly drop so low four weeks after treatment. This was supposed to be treatment week.

This was frustrating, very frustrating. And even though I wouldn't be receiving chemo, there was still lots of waiting to be had. As a post-autologous stem cell transplant patient I still have to receive monthly Pentamidine breathing treatments to prevent me from contracting PCP pneumonia. We waited. And waited. And waited for my name to be called by the respiratory therapist. Soon I began to go batty. We were both exhausted, disappointed and frustrated, so much so that I just kept laughing for no reason and kept pretending my iPhone was a taser and "zapping" Craig with it, which kept me very entertained. Reading, writing, games were all far too much to concentrate on. Hearing Craig say back: "Don't taze me, bro" a few times over was much funnier.

Two-and-a-half hours later I was brought into a little room and zipped up in a plastic tent just wide enough to envelope me and my chair – similar to E.T. when he's being examined by all of those scary scientist men. I sucked the medicated mist from my plastic peace pipe until the 20 minute treatment was over and I could be unzipped and released out into the world.

We crashed hard after a taxi ride back to Miracle House. We stayed the night and made the most of it. Plus, we were in one of the newly renovated apartments at MH – very hip. After a big nap broken only by the incessant honks of the backed up cars in 43rd street rush hour, we watched Toy Story 3 then meeting up with good friends for dinner at Five Napkin Burger - a super trendy joint in Hell's Kitchen. Laughs, shared stories, and mile high burgers helped alleviate the frustration.

Now it's back to the city in T-2 days for a second attempt at this.

Sunday, October 31, 2010

Chutes and Ladders

Bendamustine has given me quite a ride over the past three weeks. Despite being just a one-drug cocktail, it packs a punch. Kind of like the effects of drinking jungle juice made with vodka vs. grain alcohol. The latter is never a good idea. But unfortunately, I don't have a choice in this matter. If I did, I would choose straight up Hi-C.

Week 1: lukewarm hell – the debilitating fatigue, head fogginess, acid reflux, indigestion, constipation, and overwhelming malaise left me to do nothing but float around the house like a groaning blob.

Week 2: better, much better. I started to get out and about again and the gloomy skies started to clear. All systems were once again a go. Lots of hikes. Lots of lunch dates and outings. Miss cocky pants probably pushed herself too much with all the renewed energy I had.

Week 3: down again. It was expected that my blood counts/immunity would drop around this time, but the weekly CBC checks never revealed a plummet. No transfusions were needed. I guess this means my bone marrow still has steady cell building power. Maybe it was my marrow in overdrive that sent me into a bad place this week. I felt the familiar swelling in my chest. It is like having an elephant inside of my chest – not one sitting on it like I'm about to have a heart attack, rather one becoming painfully large within it. I could tell that the elephant was not happy in this constrained space.

It was tough to take deep breaths, I'd often get dizzy, and a deep cough crept in, especially when I laid down. My heart was also pumping extra hard. I could feel it push the blood through my ears loudly anytime I tried to lay down and rest. A lymph node on my left collarbone waxed and waned in size, especially if I pushed myself too much. This scared me because the feelings were all too familiar. They are the same ones I've felt every time a recurrence of the cancer has crept in ... and the trend has been for this to happen near the one month mark.

I had daily talks with my nurse practitioner (aka "bestie") at Sloan and laid very low. I diligently took my temperature and did a lot of yoga and visualizations of a chest cavity filled only with bright, white light, not damaged DNA replicating all over itself. This fear of recurrence led to a lot of anxiety, leading to chest tightness on top of the fullness, making it hard to distinguish what was going on.

I had a couple of rough mental and emotional days and a lot of nightmares. One night I was a complete wreck and tried to explain to Craig that I just wanted to take a pumpkin carving scraper to my insides. I wanted to go in and just scrape out everything growing inside of me until I was left with a heap of stringy, orange slop. He gave me a warm washcloth, instructing me to wash my face with it and stayed with me until the screaming sobs ceased.

Week 4: I'm entering this final recovery week feeling comme ci, comme ça. Neutral? The big positive is that the chest fullness is gone. The prominent lymph nodes on my collarbone and up and down my neck have at least stabilized. The cough is gone and my breathing is much improved. I'm looking forward to telling my nurse, Brynn, that things have improved. Oddly, it was after a night outside in the frigid wind at a UConn football game tailgate that I felt remarkably better. Maybe a prolonged shot of fresh air, a glittery pumpkin sticker for my cheek, and a cup of hot, hard cider is an ancient remedy of some kind – put that in the clinical trial notes. Maybe what I was feeling was a strange bug, or allergies, or paranoia. One of the struggles of being a cancer patient is to remember that I am also still a human and to not always jump to the conclusion that everything is related to cancer activity. A little post nasal drip shouldn't cause me to start making funeral arrangements.

It's been a game of Chutes and Ladders. I feel like I've climbed a few ladders and made some progress, but unfortunately the chutes have been fast and windy. This Thursday my little plastic playing piece with the pigtails, plaid skirt, and knee socks will be back at the "Start" space to begin the adventure all over again with Bendamustine round 2. At least this time I'm prepared for how high up and how low down the side effect game may take me.

Tuesday, October 26, 2010

Affairs of the Hair

I hit a major milestone last week. I got my hair cut. I'm defining the word "cut" liberally here, but I did actually go to a salon, get my hair washed and shaped. It was quite a different experience than my old days of my long hair being slathered in goop then folded into pieces of tinfoil all around my head, long periods of time spent under the dryer with a magazine ... and all of that before the cut even started. But it still had all of the relaxing benefits time at the salon can provide. It was a very proud moment for me and my hair follicles.

I have completely lost my hair and grown it back, twice. It's gone from bald to stubbly to scruff and all of the stages in between several times over. But this has been the first time since all of this began that it's grown back enough to warrant a shape and to almost, almost pass as an intentionally cut hairstyle. I was just about there around Christmastime last year and was able to style a mini faux hawk but that all ended with my first shocking relapse and is quickly as it grew in, it was that quickly gone again.

Entering the salon, I was wary. My stylist had most certainly thought I "broke up" with her long ago as I hadn't been back in 15 months. Granted I've broken up with many a stylist in the past but I really loved her. I didn't know how I was going to broach the subject of my absence: "It wasn't you, it was me ... " wasn't exactly apropos. Plus, I look like a completely different person since last time she saw me.

Turns out that wasn't a worry. The salon had made a donation to the golf fundraiser our friends put on for us and the day before, the local paper had arrived which contained a post-event story and included a detailed account of my cancer journey. She knew everything before I had to say anything. No need to break the awkward ice.

Before we started hair talk, she pulled out a stool and sat right across from me and told me just how stunned she was as her eyes welled. She's only a few years older than me. She had read theSimsbury Life article, saw my name on her schedule and looked back realizing that in fact the last time she saw me was in May 2009, the same month the article indicated I was diagnosed in. I explained that yes, just one week after I saw her for a cut and full highlight I was diagnosed with cancer. Two weeks after, I shaved my head. The tears that filled her eyes said everything then she popped back with: "Well, I've worked with post-chemo hair many times before ... and don't worry, you're hair will calm back down again."

My hair had started to creep into a clown wig style fro. After a recent doctor visit when I had to face a mirror while waiting for the doctor to enter the room, I explained to Craig: "If Lionel Richie and Justin Timberlake had a love child, this is what its hair would look like."

On humid days especially, the super tight curls were getting out of control. They didn't bother me on the top so much, but I had no idea how to tame the sides. The curls were even creeping down the back of my neck creating something beginning to resemble a kinky mullet – frightening. I needed help. I adore ringlets on other women, I've just never before had to maintain these sprouted objects. Well, except for that bad spiral perm circa '92.

With that mission in mind she started by washing my hair, which felt so, so nice, especially the head massage she gave me while rubbing in the conditioner. Then out came the scissors and the buzzer. It was a bit saddening watching the little ringlets of hair fall to the floor after they had worked so hard to sprout. In early July I was completely and utterly bald, including eyelashes and eyebrows. It amazes me to think about the progress made in just over three months and no matter how differently it grew back, I love every strand of it.

She shaped my sides and taught me how to use a wax to style it and to tousle the curly beast on top. I actually got choked up when she gave me a hand mirror to hold and spun my chair around to view my new style from 360 degrees. To an outsider the change was subtle, but to me, it made a huge difference. I didn't look like a post-chemo patient. I looked like a chic, hip, modern woman.

"It looks almost like I did this on purpose," I said, smiling.

She laughed and agreed that we are getting there. She didn't charge me for the cut. That got me really emotional and I gave her a big hug.

I walked into our front door at home completely beaming.

"Wow, what are you so happy about?" says Craig, not noticing the before and after difference. This is the same result I'd get after two hours in the salon chair and it made me laugh.

Months back Craig said to me: "I don't even notice that you are bald. I don't notice your hair. I just look at you and see you." I do my best to do the same. I think this is why I haven't worn my wig since the cruise we took late June. It's just not me and I can't get comfortable with it. But for that time and those moments it was right.

I can't get too used to this current look though. I will lose my hair yet again with the next transplant. But for now, it looks, dare I say it, cute. However, I've lost my eyelashes again and my eyebrows are barely hanging on as a result of the Bendamustine, but beggars can't be choosers. When this is all over I could care less whether I'm left permanently hairless or having developed Werewolf Syndrome if it means I'm still here.

Hair – A Retrospective of the Past Three Years: