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.