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.

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.

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.

Stalled

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.

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.