Saturday, January 30, 2010

Down a Few Lymph Nodes

Other than the fact that I look like someone sliced my neck ala Jack Bauer style, the immense swelling around the incision, and the impending news of the biopsy results hanging over me, I'm doing okay.

We arrived on time for the procedure and were escorted right to the OR prep area. My nurse there was sweet but not so savvy with the old IV insertion. She asked me myriad of questions about my health history from whether I ever had asthma to the last time I had a bowel movement. I had to strip down everything, but she told me she wouldn't rat me out if I kept my undies on. I didn't see why I had to be flapping in the breeze if they were operating on my chest. I got to wear one of the hospital's newly acquired "Bair paw" pre-op gowns which has a tube you can connect to it and blow in hot air to warm you up. It was fun inflating and deflating it and it felt good to be nice and toasty.

My nurse had breast cancer the year before so we swapped stories about amazing friends and the debilitating fatigue that the chemo can cause. Unfortunately, they couldn't use my port as it was too close to the area that would be operated on and not accessible enough to switch out the meds I would need. So in she went for a stick in my hand. Unfortunately, she missed and it was a regular blood bath. I could feel the hot blood seething through my fingers as she kept saying "sorry, sorry." I just breathed and didn't look until she got the IV in. Then I saw the blood-soaked white towel and the blood splattered on the sheet beneath me. The cracks of my fingers were stained red. Great start to the morning.

Then it was a lot of waiting. I did some calisthenics to get pumped up and Craig and I read trashy magazines and cracked jokes. I was ready to get it done and over with. We then got a visit from my anesthesia team - a doc and a resident. They were a very funny and very calming duo who explained how they would insert a breathing tube and at times they would be breathing for me during the procedure. They warned me that if the surgeon had to make the second incision in my chest that they may need to insert a chest tube to ensure air flow so as not to worry if I wake up with a hole in my side and a tube coming out of it. They told me that first they'd give me preliminary meds to relax me which would make me feel like I had a few too many margaritas then they'd send in the hard stuff that would send me right to "Maui." Sounded nice.

I asked if I'd get the chance to talk with the surgeon before. That was very important to me as I had never met this man and wanted to at least see the face and shake the hand of the person that would be slicing me open. They assured me that he would come see me.

More time passed and one by one all of the other patients in the curtained cubbies around me were visited by their surgeons and rolled away into their respective operating rooms. Eventually it was just me and Craig. The nurses pulled the separating curtains back and it was just me on my one stretcher in this expansive empty room. My anesthesia duo were sitting in chairs in the hallway - all of us awaiting the surgeon. We joked that he was probably really hung over and had a touch time making it in that morning ... that was not a very funny thought. But he arrived, with time to spare before my scheduled start. My hero in blue scrubs. His curly white chest hair peeked above the v-neck scrub shirt and I marveled at the curly, white hair on his arms. His Ironman watch and muscular build gave off an aura of confidence and experience. I liked him immediately. He again explained in his faint British accent what he'd be doing and assured Craig and I that he's been doing this for 30 years and it was no big deal.

Craig and I kissed goodbye and I was wheeled away leaving the pre-op room empty and ready to prepare for the return of all of us patients after our procedures when it would covert back to the Post Anesthesia Care Unit (PACU).

Just like my anesthesiologist from my biopsy in May, this one also grew up in Simsbury so we chatted about the Tariffville gorges and the hiking trails at the end of my street.

"Here we are, lucky number '8'," he said as we rolled into Core 8 Operating Room. Eight is my lucky number in fact. The OR nurses introduced themselves and again asked who I was, why I was there, what I was getting done, who my surgeon was, etc. to make sure we were all in the right place. I was then transferred from my stretcher to a skinny padded operating table. Huge, white round lights were above me and lots of beeping boxes around me.

The anesthesia resident gave me the margarita injection and told me I'd feel like I had too much to drink then came the hard stuff which burned badly as it entered my vein - exactly as they had warned me. The last thing I remember is them unbuttoning my gown and I was in another place ... .

I woke up as I was being wheeled out of the OR and back to the PACU and the anasthesiologist said, "Look, you missed all the snow."

From what I could see out the corridor without my glasses were big, beautiful white flakes coming down. I thought that I must have been in there for days. That morning it was nearly 50 degrees. Then I remembered that we live in New England.

As soon as I could speak the first thing I asked him was, "Did he have to go in twice?"

"No, he was able to get some good samples at the first entry point," he replied.

I felt like the wind was taken out of me and a lump developed immediately in my throat. When I was parked in my curtain-partitioned "room" in the PACU I was facing a large digital clock on the wall which read: 10:03 a.m. That meant that I was in the OR for less than an hour. I knew that this was bad news and got very, very emotional. I tried my best to hold in my tears, but I knew that this meant he found abnormal tissue right away. I was so hopeful that he'd have to keep entering me to try to find anything abnormal and would come away saying, "huh, must have been a fluke on the scan." But that was not the case.

I was so, so, so thirsty and my throat and lips were so dry from the breathing tube. I asked for something, anything, and what they could give me was a "post-procedure popsicle," a tiny, blue sponge on a stick that soaked in water. I rubbed it across my lips and sucked out every last drop. It felt amazing.

A few minutes later my mom and Craig came into the room and that's when I lost it. It's not easy to cry with oxygen tubes up your nose and a very swollen neck. I was still loopy but conscious enough to know what had happened. I demanded to know what the surgeon said to them and learned that he pulled three hard, abnormal tissue samples from my chest lymph nodes that were quickly determined to be good samples for the pathologist to analyze.

Tears streamed down my face and my mom grabbed my hand. The nurses looked away to give me some peace as I tried to suck it up and save myself some dignity. I was just so gravely disappointed. They took my family away and injected me with some more pain meds and some anti-nausea as I felt rather sick from the whole ordeal. The anti-nausea made me sleepy and I dosed in and out as I waited for the ride that would take me to a room in another area of the hospital where I would do some more recovering and get some food and something to drink. The PACU filled with more and more post-op patients and I woke to the sounds of a woman across the room heaving and puking violently and I was grateful that I was not in her shoes and my heart went out to her.

Finally my transportation came and I was sent to a shared room where my parents and Craig were waiting for me. I was presented with a tray of food: "turkey" with salty gravy, spinach (this was good) and white rice, a plastic wrapped piece of white bread and a little dish with something attempting to be apple crisp. I forced it down and chugged the ginger ale knowing that they wouldn't release me until I ate, drank and purged. The peanut M&Ms and Raisenettes that my family had went down much easier.

I got my bearings pretty quickly. I was very sore in the incision area but my head was clear. My mom, dad, Craig and I played some trivia games on the computer as my "food" digested then took a walk around the unit until I could assure everyone that I was fine to go home.

So, here I am. The past couple of days have been spent doing a lot of napping, a lot of reading, movies and a lot of Tylenol popping. I've managed to not have to fill the vicodin prescription. Everything is just very swollen more than anything. My mom helped me to remove the Band-Aid yesterday which I was a big baby about and now there are three steri strips that remain covering the 1-and-a-half-inch incision. Eventually they will disintegrate. Basically I look like I was mugged by knife point or held hostage with a taunting knife slice. I'll forever have this scar in this very prominent area as a constant reminder. Right now I'm not too happy with my new look but I know in a few months that it'll just be a battle scar resembling the battle that I won. Craig says scars are cool and I'm trying to convince myself that I must be super cool with all that I have.

Wednesday, January 27, 2010

Back to the OR

Tomorrow morning I have my next surgical biopsy procedure - a mediastinoscopy with a possible Chamberlain procedure (i.e. coming at me a second way).

As Craig phrased it, I am the first fish to be filleted tomorrow, the surgeon's first case. I'll be there bright and early at 6:30 a.m. with husband in tow. My Mom and Dad will be there when I wake up. It's estimated that the procedure will be 1 1/2 to 3 hours with another 2 hours of post-op recovery as I come back from that familiar "pleasantly drunk" state.

I am ready and completely confident in the surgeon's expertise. I followed the protocols ... showered with antibacterial, pre-surgical Hibiclens, I'll be fasting after midnight and showering with Hibiclens again in the morning before heading to the hospital. I've shed all my jewelry and swapped my contacts for glasses.

Craig and I went out for a fantastic dinner tonight at Amelia's in Simsbury, cashing in a gift certificate I received for "kicking cancer's ass" - very appropriately timed because we're hoping that it's still down for the count. The calamari, chopped salad, and seafood fra diavolo should hold me over until I can eat again late tomorrow afternoon. I realize the spicy diavolo sauce was a risky choice ... let's hope I don't have that revisiting tomorrow. Now it's a comfy blanket and Sleepytime tea. I'll dab some "de-stress" ointment on my neck and ear lobes - the bottle says that it will "make the weight of the world melt away." Can't hurt to try.

I've packed an overnight bag with comfy clothes, bathroom essentials, books, my journal and Cubby, the stuffed bear I've been carrying around for just these types of moments since Craig gave it to me one Valentine's Day in college. I'm preparing for an overnight stay in hopes that that means it will happen. If I'm overnight in the hospital then that means that they couldn't find any abnormal tissue upon the first entry and had to take it a step further to find some. I'm even more hopeful that they won't be able to locate any even on the second point of entry.

But I'm not naive and I am prepared for the worst. I am mentally ready for whatever the results may be. Emotionally and physically may be another story, but I can work on that. As far back as my last treatments, I always had a tugging inkling that I'd have to have a second treatment regimen and the idea of a stem cell transplant has always been a real possibility to me for some strange reason. It is one of those gut feelings that I can't explain.

Despite that, I am still passionately hopeful, and I hope that my instincts are dead wrong.

Friday, January 22, 2010

We Have a Plan

And I can breathe again ... ahhhh. I came home from work today and both Craig and I were taken by surprise by the picnic tablecloth adorned with paper place settings and a full spread of summer treats - hot dogs, potato salad, olives medley, raspberries and more. My mom had swooped in during the day and set up the whole thing - balloons and all and wrote us a big note on the back of a pizza box. So sweet. And there was a beautiful arrangement of flowers that just screamed encouragement from the Arts Council crew.

Really everything came together today. My amazing Dr. Dailey called me this morning and has me set with not just a consultation, but the biopsy procedure itself on Thursday morning. Tonight I got a call from the thoracic surgeon's nurse confirming everything and then even the surgeon himself - at 6:30 p.m. on a Friday. So thoughtful and so thorough. He spent 45 minutes going over all of my history and scans with a radiologist at the cancer center and got a good understanding of where I've been and where I'm at. I think the fact that I work at the hospital may have influenced this attention, but hey, I'm not complaining!

So here's the plan:
  • On Thursday morning my mom and Craig are taking me into the hospital where we'll meet with the surgeon to go over the details further. He usually likes to do this in an advance meeting, but Dr. Dailey made it clear that he wanted this done soon and though the surgeon had no appointment openings for weeks, they were able to make a compromise.
  • From there they'll knock me out with general anesthesia then right to the operating room.
  • He will first make an incision at the base of my neck and send a scope down to look around. He'll then use his instruments to snag some of the lymph node tissue in question.
  • They'll analyze the tissue under a microscope right there in the operating room.
  • If it shows as abnormal tissue then he'll stop there, sew me back up and send that sample to the pathologist to analyze for cancer (or other) abnormal cells. If that's the case then I'll likely be able to go home that day.
  • If it's analyzed to be normal tissue then it's onto plan b. He'll then make an incision by my left breast bone and will go in with the scope between my 2nd and 3rd ribs where he says there are many enlarged lymph nodes that he will be able to grab. This area is more delicate and the procedure more involved so if he has to go this route I'll be in the hospital recovering for a couple of days.
  • Depending on whether surgery in the 2nd location is required, the surgery itself will be between 1 1/2 to 3ish hours.
  • The tissues will be analyzed by pathologists and the hope is that we will have an answer as to what is going on in my nodes by Monday.
I am so happy to have a plan in place and that has really helped to alleviate my anxiety. I'm looking forward to this weekend and will be getting myself strong and ready for the big day.

Thursday, January 21, 2010


I'm not doing so well with this whole waiting thing. I don't think I have ever been this stressed in my entire life. Not when I was first diagnosed with cancer, not when I had my first surgery, not during any of my chemo treatments. For some reason this is hitting me very, very hard.

Since the "good" news about the negative bone biopsy I've had no new developments. The journey is stalled out, on hold, the pause button has been hit. I'm stuck in limbo land and it's an awful land to be in. I've been keeping busy - working, skiing, going out to dinner, running (well, once - and I even had a stray yellow lab follow me home) but even all of that doesn't seem to be effective in squelching this fear/frustration inside of me. I'm feeling very disappointed in myself and in my capabilities to handle this.

I still don't even have a consultation scheduled with the surgeon. I thought I was getting in before the end of this week and would have the mediastinoscopy biopsy early next week. It seems like things aren't going that way. However there is some hope that when my oncologist gets in tomorrow he'll be able to lay the smack down (well, he's more the soft, gentle persuasive type but I have faith in him) and get me in. It doesn't help that the surgeon's assistant has been much less than accommodating and has an attitude that I really don't appreciate and really don't need. Luckily my oncologist's assistant is amazing and has called in to lay into this lady more than once on my behalf. It feels good to have a posse behind me.

Right now, I don't care how renowned this surgeon is. I'm ready to go in and yank out these nodes myself. I'll hand deliver them to the pathologist if it means that I can get an answer about what is going on inside my body. I just need a plan. I never knew how important that was to me until now. I think my initial cancer diagnosis came so fast - the biopsy, the diagnosis, the start of chemo the next day ... the plan was made before I could even digest it. Right now I'm ready for whatever the next steps are I just need to know what they are. I am absolutely flat out with the anxiety and anticipation. I feel it throughout my entire body - everything aches and I'm so, so tired. I've been doing my absolute best to keep busy, stay focused on anything besides what may or may not be, but today was the toughest day yet.

I'm now just angry at myself and feel so selfish for crying and heaving over what I'm going through when there are millions of people in Haiti without food and shelter, without their loved ones who they'll never see again. I've never in my life not been able to handle something by thinking positive thoughts and keeping perspective. I feel like I'm not myself and that my world is skewed and way out of whack. I've got to get my shit together or I'm never going to make it.

I learned tonight that stuffing my face with calzones and cookies is not the answer because I feel way worse. Hopefully a great night of some of my favorite comedy TV will. Being with Craig and Sammy certainly does. But I can't pretend it's all been bad. We had a great weekend skiing. I saw my best friend from childhood and her baby last night. Work is busy and productive. And, well, I'm alive and all my parts are in tact. I am grateful for that, just a little jaded right now.

Saturday, January 16, 2010

On the Positive Side of Neutral News

I have never had to wait as long as I had to to be seen by my oncologist yesterday. Of course, this happened after days of agonizingly waiting for my biopsy results. The cancer center was jam-packed and Dr. Dailey was running behind.

I was surrounded by so many people in the waiting area - old, young, all different races and ethnicities and visible degrees of illness. It was nearing an hour after my scheduled appointment when a huge family speaking a language I didn't recognize engulfed me as they all hovered over their sick matriarch in her wheel chair. The whole thing was so overwhelming. Though it was as quiet as any medical waiting room, I felt that all the voices were amplified and echoing all around me ... things started to spin at points and I felt like I was visibly rocking back and forth. I really thought that the anxiety was just going to swallow me up whole. Craig was right there with me trying to keep us sane. He offered to look up pictures of puppies on my phone as he thought that would make me feel better. I don't think even the Charmin toilet paper puppy could have pulled me out of that anxiety-laden funk.

Finally my name was called and we waited a little longer in his exam room. Dr. Dailey walked through the door, closed it and said: "So, we think that the results are going to be negative." He wasted no time in getting it out - perfect. But, oddly, that wasn't the results that I was hoping for because I knew it wasn't a definitive indication that there is no cancer brewing. I still can't yet breathe a sigh of relief.

He explained that the samples looked like regular, clean marrow. There will be an additional staining test done by the pathologist over the weekend that has the chance of illuminating Hodgkin cells, but he is doubtful that that will happen. So, this could mean a few things: the needle just missed the area that may be holding Hodgkin cells; there are no Hodgkin cells and the hot spot was just one of these fluky PET-Scan false positives - it could be that it's just a false positive in that bone and the rest of the hot spots are cancer - or it could mean that all of the areas are false positives or signs of some inflammatory disease that also didn't get picked up in the sample. Still lots of unknowns.

What is known is that Dr. Dailey is not comfortable letting this go - and neither am I, of course. I further pressed him for his gut feeling on what's going on and he reiterated, a little more outwardly this time, that he thinks there is a strong chance that something is brewing but that we have to prove it. The treatment that I would get is very intensive so we need to be absolutely certain with a tissue sample showing proof of cancer. We also discussed the chance that this could be re-manifesting as instead Non-Hodgkin Lymphoma in which case the treatment would be very different.

In short, more testing is needed. And that means another surgery, this one more involved. After we get the final pathology report on Monday, Dr. Dailey will discuss further with a well-known thoracic surgeon in the hospital who is already familiar with my case. He is suggesting that I undergo a mediastinoscopy, a surgical procedure to examine the inside of my upper chest between and in front of my lungs (my mediastinum). What he will do is send a scope down in there or come at it from the side of my chest and pull out a bunch of lymph nodes for sampling. There are several hot spots in this area and this is the area where I had the most involvement from the very beginning. Lymphomas - Hodgkin's Disease especially - tend to manifest in this area of rich tissue and sampling from here will give us a much more definitive answer of what's going on. The reason that we didn't start here vs. sampling the bone marrow was that the procedure is a bit more risky as it is being done around my vital organs and there is always some danger with poking sharp objects around in there.

Hopefully, the mediastinoscopy will be the last of the tests and we'll finally have some answers. I'll at least be meeting with the surgeon this coming Friday, and if his schedule allows, maybe even having the procedure done as early as then. After our discussion, I'll know some more about his surgical plan of attack. After the lymph nodes are analyzed for cancer cell involvement we'll have a pretty sure answer. If they come back negative we can be mildly confident that there is no cancer anywhere else in my body - I will still have to be watched very closely. If they come back positive for a Hodgkin relapse then it's down to the team at Yale New Haven Hospital to discuss stem cell transplantation.

I hate that I don't have any more answers to report. Part of me just wanted him to say that the results were positive showing a recurrence and we could get on with the plan of attack and I could get out of this awful life limbo. But over dirt wings and mircobrews at J. Timothy's Craig was able to convince me that the news we got was better than the alternative. At least for now, there is still hope ... I am one step closer to possibly finding out that I am in fact still cancer-free. We decided that the results were on the positive side of neutral news.

Thursday, January 14, 2010

If I Had A Hammer, I'd Hammer Out My Marrow

Today I feel like someone rammed a 13-gauage needle several times into my left pelvic bone - at times forcing it through the bone with a surgical hammer and coming back out with samples of my marrow. I guess that should be expected, because someone did.

As long as I keep popping ibuprofen and don't put pressure on the area it's really not all that bad. The needle biopsy went well yesterday according to the Physician's Assistant who performed it and he said he got two solid samples. He was not the doctor that I expected to be doing the job, but he was thorough and damn strong.

Pre-procedure, the nurse in the Imaging Center accessed my port so that they could draw blood and send sedation drugs into me via my lady lump. I figured I may as well use it if I have to keep it in my chest. I've been shy about having non-oncology nurses access it after the experience with the nurse saying her "Hail Marys" as she yanked the sucker back and forth trying to get the needle out. This nurse however was fantastic and got the needle in without a problem. She was also careful to build up a lot of support around it noting how skinny I am up there and that there's not much fat to hold in the needle. I appreciated that as once I was hooked up to all the tubes I was very nervous
about ripping it out.

My mom and I peppered the PA with questions. Because he was young and approachable I knew he would give it to me straight. He was pretty certain that there's some cancerous activity going on. But he helped to affirm my own outlook that in an odd way, we want this biopsy to come out positive as Hodgkin lymphoma because a) that's better than a less treatable cancer b) that avoids the need for what would otherwise be inevitable further biopsies done in riskier areas.

With that in mind I went into the procedure. I rolled into the CT-Scan room on a stretcher. Lining the halls were paintings by Ken Kahn, my former director at the Arts Council. This immediately made me smile and put me at ease.

I was placed on a CT-scan table face-down on my belly with a couple pillows to cuddle under my head as I nestled into the shallow dip that was the table. I was covered with sticky monitor squares all over my back, an oxygen tube was stuck up each nostril, and my port was connected to medicinal fluid that would supposedly put me in a "dream-like state" from which I would be in la-la-land and wouldn't remember anything after the procedure.

All the cords were laid out in front of me coming over my head so that I felt like one of the humans in Avatar being hooked up to sync in with my big blue Avatar body. In true Avatar fashion my back was scrubbed with a blue antiseptic. But unlike the Avatar transformations, my ass was in the air flapping in the breeze. The majority of my back and all of my legs were covered in blankets but my entire rump was bared for everyone in the room to see. Not sure why my ass had to be out to access my pelvic bone ... I think the PA liked me ;). At this point in treatment I have no shame. I've dropped my drawers so many times and have had so many people palpate my lymph nodes that modesty is long gone.

So there I laid. But this "dream-like" state never came. I felt the local anesthesia needle which stung like hell then felt all the pressure of the needle stabbing that came next. It wasn't painful, just an uncomfortable pressure surrounded by sounds that I did not want to hear. I just laid there transporting myself back to the Whitsunday Islands in Australia and singing myself lullabyes in my head. As I had been warned, because I am young, my bones would be hard to enter. Out came the surgical hammer and I could hear and feel it banging an opening in my pelvic bone to get the needle deep into my marrow. The banging would progress then I'd be slid under the CT-Scan area for some photographs of my ass, I mean pelvic area, and come back out for more needle pressure. The cycle happened a few more times. I heard him talking about coming at me at a different angle and I'd feel the pressure again. But I didn't really want to say anything because I found it fascinating. I got to watch as they would print pictures of my PET-CT scan to line up the hot spots with where the needle was entering my body. I got to hear all the conversation about the samples and the strength of my bones. However, I probably could have done without hearing the sound of the hammer.

Finally I said, "Is that the last sample you need?"

"What the hell, we all thought you were asleep," the PA said.

"What were you meditating or something?" the nurse asked.

"Yes, isn't that what I was supposed to do?" I said, amazed at the poor showing of the meds that were supposed to knock me out. He had told me that I wouldn't be completely unconscious so I just thought my level of awareness was normal. Again, my high tolerance came back to bite me. I thought back to how shocked the anesthesiologist was at how much it took to knock me out when I had my surgical lymph node biopsy. Little girl. Big tolerance.

I had to stay there for an hour to recover afterward though I really didn't need it. They rolled me back to my mom on the stretcher.

"This girl tricked us all into thinking she was sleeping," said the PA as he parked me back into my recovery cubby.

So hungry after having to fast all morning I wolfed down an egg salad sandwich that was offered me. When I remarked as to how good it was and the PCA told me there were more and that they only go to waste at the end of the day, I figured I'd help them out. I downed a second with a couple Fig Newtons in between as my mom laughed at my ravenous appetite.

As the local anesthesia started to wear off, the soreness and wooziness set it. But my mom was there to drive me home - and not only that, but to tuck me into blankets on the couch and proceed to clean our entire home (toilets included) while I cuddled and slept with Sammy. I am pretty lucky. Then Craig came home and my Dad came over to add to the pampering. My mom and I made a delicious, healthy dinner together and we all shared some laughs that balanced out the serious talk about what's to come.

Today I've been sore and bruised but not too bad, considering. It's the mental tool that is much worse than the physical. But I worked from home for half a day as I nursed my bum which was great to keep my mind off things. Then the afternoon was spent on an easy walk with Sam in the beautiful winter sun, some reading and relaxing and a long visit with my baby brother (baby as in more than six feet tall and 20 years old). Mindless chatting and a good dose of Ferris Bueller's Day Off made what could be an otherwise daunting day much more bearable. Even Sammy loves when he comes over to visit.

Tomorrow Craig and I head in for an appointment with Dr. Dailey to get the results. I'm ready ... whatever they may be ... Bring. It. On.

Saturday, January 9, 2010

Afraid of What I Don't Know

"I'm worried about your scan results," said my oncologist's voice on the other end of my office line. Those were literally the first words out of his mouth - very uncharacteristic.

Like I got a hearty punch in the gut I may have stopped breathing for a minute - or two. Things blurred in front of me and my mouth felt as if it were stuffed with cotton balls.

But me being me, I responded: "Really? What do you mean?" in my cheery voice.

He told me to come in and that I should bring Craig and my mom if I could. Before we hung up the phone he asked me if I was going to be okay - told me that I sounded very calm. He asked if I wanted him to write me a script - some Ativan, perhaps? Me? No. Half a box of red wine will do.

I had had my fourth PET-CT Scan two days earlier. We all had every hope that this scan would be the affirmative that all was clear. It would be the final sign-off and I could schedule an appointment to get my port removed from my chest. Apparently, no such luck.

Going in for a scan is incredibly unnerving. I was very anxious, apprehensive, nervous - all those emotions that keep you from sleeping and kick around your stomach like it's a soccer ball. There was a lot riding on this one and I'm disappointed to say that the outcome wasn't what I had been hoping so desperately for. To avoid any false positives I was careful not to do any physical activity the day before my scan, I went to bed early and I drank every last drop of that horrific milky/chalky barium sulfate. Despite all of these efforts, I can't say I am entirely surprised that
my scan wasn't clear as I had been experiencing that heaviness and fullness in my chest for several weeks and had that gut feeling that something wasn't right - as much as I tried to grin and bear it through the holidays. What I didn't expect was how much suspicious activity would show up. Right now I'm feeling defeated and anxious beyond words.

There are what are called "hot spots" growing on my sternum, in my mediastinum, behind my abdomen and in my left pelvic bone, as well as some warmth in my spleen. "Son of a bitch" I thought cursing the results as Dr. Dailey carefully and thoughtfully explained this to my mother and me at a follow-up on Thursday. Just because there is hot spotting does not mean that it's cancer activity, but I quote, "There is a fairly high chance that something is brewing." That's not an easy sentence to swallow.

PET-scans are very finicky and are notorious for rendering false positive results. Hot spots reveal anywhere where there is increased metabolic activity taking place in the body. Cancer activity shows up this way, but so does inflammation or scarring action that may be a result of my body still playing clean up after everything it's been through ... though my doctor says that should have already happened.

Because my cancer was so widespread at diagnosis with a 4b staging, the chance of recurrence is higher than those with lower stages of Hodgkin's disease. There is a chance that even if the ABVD chemo regimen killed 99% of the cancer cells, that 1% could have been resistant to it and are now replicating and spreading like little rogue bastards. I'd been told all along that if I were to have a relapse it'd most likely happen in the first two years of remission. Two months after finishing treatment? No, I did not expect this.

But again, we don't know anything for certain and won't until the cells in these suspicious areas are examined. So, on Wednesday, I'm headed in for a ct-scan-guided fine needle biopsy of the area in my left pelvic bone that is hot spotting on the scan. My life as I know it is riding on the results.

If it comes back negative - great news - but, we still won't know for sure if this area was just a false positive while the enflamed lymph nodes in my chest or the activity in my spleen might be signs of another malignancy. So unless the negative result shows some very definitive answer as to something else completely unrelated to cancer going on in my body, then we'll have to continue to watch this closely and I'll likely have to go in for more biopsies of the other areas in question. Slice and dice we will ... .

If in fact the ABVD didn't kill everything and the results show that the Reed Sternberg cells are back - a tell-tale sign that the Hodgkin's disease is again on the attack, then there's a long road ahead. We talked a lot about what the next steps would be if I am in fact having an "early recurrence" as Dr. Dailey phrased it. To be blunt, the thought of it all scares me shitless. It'll involve much high-dose chemotherapy, hospital stays, and an analogous stem cell transplant which will in effect wipe out my entire bone marrow, force me to produce new cells, harvest and freeze them, then re-implant them for my body to start fresh without any abnormal cancer cells lurking. To get the procedure needed I'd have to go to Yale New Haven or Dana Farber hospital and would have to spend a lot of time there ... . But even if I have to go through it, I'm told that my chances of being cured are still very high - a 35-60% chance to be completely cured. In preparation I've been told to get my rest, eat right, no strenuous exercise - to keep my focus on getting/staying strong.

But right now that's neither here nor there. We were just laying all the options on the table. I am now doing my very best not to create scenarios in my head, not to focus on the unknown, not to drive myself crazy. I have no doubt that this week will be one of the longest in my life as I await my fate. I have so many questions, so many fears, so, so, so much anxiety and am working my hardest to keep it all from overtaking me.

As Dora in Finding Nemo says: "Just keep swimming ... Just keep swimming ... ."

Saturday, January 2, 2010

The Soundtrack of My Cancer Journey

Music, lyrics, theater, have always been a very central part of my life. Artistic expression is cathartic, it's healing and it creates connections with others and within yourself unlike anything else can. I have no doubt that music, writing and creativity were absolutely essential to my healing process. Embedded are the three songs that I consider the "soundtrack" of my cancer battle. Of course mixed among these were many others that geared me up, sated me, helped me to understand, no matter what mood I was in.

I would play these three songs to and from appointments at the Avon Cancer Center when I was driving by myself. The song length worked exactly with the distance between there and my house. I'd listen to them in the order I have them below. I'd always sing along at full tilt, windows down.

I've seen Rent, the musical, five times, but its messages never hit me so hard. I was always drawn to the story of those "living with, not dying from disease" and the struggles and triumphs of the story's characters. Maybe I've been so affected by it because it was a premonition of my own life. Though the story is focused on HIV/AIDS, no matter what the obstacle, we all experience the same feelings of isolation, fear, anger, and constant questioning.

"One Song Glory" always hit me hard because to me its about making your mark, about finding meaning in this crazy life, about wanting desperately to do everything you can before you die - especially when the prospect of death dangles precariously close.

The "credo" in the second song "Will I?" is sung during a Life Support meeting for "people coping with life" in the show. It became my personal credo as my life grew harder to cope with. The musical arrangement is so incredibly beautiful and inspiring. I still cannot listen to it without crying.

Jason Mraz's "Life is Wonderful" is simple and beautiful. It always picked me up and helped me to keep a positive perspective.

Play these as loudly as your speakers can handle. And if you don't know the words already, learn them, and sing your heart out. Enjoy the results.

Piles of Paperwork

I just pulled out the file folder labeled "medical" to embark on organizing it. When I couldn't pull out any one single piece of paperwork because it was all jammed in there so tightly, I put it back on the shelf and closed the closet door. Let's leave that for another day ... .

In there are countless prescription and co-pay receipts (tax filing ought to be fun), blood work reports, CVS receipts, test results, bills, and who knows what else. As the dust settles, the practical realities set in. Having cancer requires a lot of paperwork. Paperwork that I never expected I'd have to deal with for many, many moons.

Months ago, it was recommended that Craig and I fill out living will, power of attorney, health care representative, and health care directives paperwork. So, we found a lawyer and somehow got through the paperwork without letting the reason we were filling it out get to us too much. It's just a technicality, right?

"If the time comes when I am incapacitated to the point where I can no longer actively take part in decisions for my own life, and am unable to direct my physician as to my own medical care, I wish this statement to stand as a testament of my wishes" reads the opening paragraph of the document titled: "Document Concerning Health Care and Withholding or Withdrawl of Life Support Systems."

In short, "when do I want someone to pull the plug and who do I want to give the authority to to make the call when it's time to yank it." No, not heavy at all.

We had to decide who I'd leave my estate to, who could make health decisions for me if I could not, lots of uplifting things. It was the third day after a chemo session and I remember feeling so woosy and out of it having to make these vitally important decisions. I had never thought about dying and there I was getting my affairs in order. Very strange. But now it's done and over with - quick like ripping off a Band-Aid.

And then there's the bills. It's like they wait for you to get through your treatment then they all come piling in at once. Every time I walked through the door of my oncologist's office, I was whopped with a $30 co-pay (a fun surprise to learn after the fact). That's every treatment, every follow-up visit, every Neup shot-three times per week. I guess they don't want to harass you for money when you've got enough on your mind during an office visit. The co-pay for one of my anti-nausea meds alone was $80 every treatment. Then of course, the hospital stay, the scans, the drugs not covered, the co-pays for all the other specialists I've been sent to, the lab work ... the list goes on and on.

So it's $600 here, another $425 there. And I have great insurance. If I didn't, the hospital stay for my biopsy alone would have set me back $13,214.40. I paid nothing. The cost of just the drugs taken in each chemo infusion hovered around $1,800 every two weeks - I can't complain about the $30 co-pay.

It's crazy to me to think of the millions that have to go through this without comprehensive health insurance - what an awful, awful reality to have to deal with on top of everything else. Sure, we had quite our share of unexpected expenses this year, but I know that we are very, very lucky. The need for health care reform is so incredibly great. No one should have to choose between eating and getting the drugs that can save their lives. And no one should be denied coverage because of pre-existing conditions. There is no way that I'd be able to get health insurance now with this big red-flag of cancer stamped on my medical record. Never mind life insurance. Our financial advisor told me that it'll be at least five years into survivorship that I can even apply to get a decent policy. Again, luckily, I'm covered to the max that I can be through my employer with no questions asked. At least it's something.

Now comes the requests to participate in research studies and post-care evaluations, which I am all for. I plan to participate in any study that I can in the hopes that it can help any future Hodgkin patients. Though the lists of questions are at times perplexing, I know it's worth the effort of filling it all out.

I used to like having what I'd call "administrative days" when I'd go through all of our bills and organize everything. Now I laugh thinking about how deciphering the line items in our cell phone bill was difficult. Refinancing our mortgage? Ha. Looking back, that was a breeze.

Now? Reading through all the "Explanation of Benefits" paperwork that rolls in every month detailing which doctor can bill me what has at times made me more nauseous than the chemo regimen itself. Keeping up with it all is exhausting.