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).

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.

Perceptions

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.

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:

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.