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.

I Can Breathe Again

My CT-Scan showed no evidence of any tissues masses, enflamed lymph nodes, or anything that may indicate that cancer remains (or is emerging.) Needless to say, fantastic news. This scan is much more conclusive - they took 64-slice imaging of my chest to get a very, very detailed look at anything that might be going on there there's nothing but the normal chest innards.

Now I can stop planning what I thought would be another six months (at least) of hell - or my own funeral arrangements - and get back to planning my future. Most immediately that means Thanksgiving - that holiday now has a whole new meaning beyond the chance to gorge on butternut squash. Then my favorite time of year - Christmas. And I can now confidently say that I'll never have to have a Christmas with cancer! I'll have a Christmas with a port in my chest and a very strange hairdo ... but no cancer! After the New Year I'll have another PET-CT Scan and as long as the results are again clear, I can finally schedule the port removal.

After that? Running a half-marathon, enrolling in grad school, mastering the tripod headstand, writing a novel, volunteering to help others going through this, mentoring, tackling a triathalon, traveling the globe, starring in community theater productions, learning the guitar, taking an African safari, promoting world peace ... you know, the little stuff. At least I can get back to dreaming about it all now without cancer clouding the way.

In Flux: Cancer or No Cancer?

Getting a phone call from your oncologist on your office phone in the middle of the day is a little unsettling. Getting the call the day before you have a scheduled appointment with him to go over your PET-CT Scan results is a bit more worrisome. When you pick up and he tells you he'd like to meet with you to go over things ... and that you might want to bring along your husband or mom, that's really not a good sign.

I was expecting to receive the results of my first post-treatment PET-CT Scan on Friday, the 13th - "boldly" (in the words of my oncologist) scheduled on this superstitiously day of oddities. However, I got the news a day early after Dr. Dailey found some concerning results.

He called me at work. For a fleeting moment I thought (hoped) that maybe he wanted to alert me to something happening at the cancer center that I should include in the hospital newsletter. That faded quickly when he told me that he got my scan results back and had shared them with several colleagues in the cancer center, an expert pathologist, a noted thoracic surgeon at the hospital, etc. I know that you don't go around displaying perfectly clear scans across the hospital.

The long and short of it is that there is what is called a "hot spot" that appeared on my scan. It shows up in my anterior mediastinal tract (between my lungs) more toward my heart. "Hot spots" are how oncologists find if and where cancer is lurking in your body. I was "hot spotting" all over the place in my initial scan ... "like a Christmas tree" I believe the wording was. The good news is that this particular "hot spot" is only a centimeter large and it is the ONLY area of activity on the entire scan. The even better news is that the probability of showing a false positive on these types of scans is very high. The PET scan shows anywhere that there is high metabolic activity - something that cancer cells display, but also something that other tissue inflammation or swollen lymph nodes (without cancer activity) can display.

The area is too small to be able to perform a successful needle biopsy to pull out the tissue to test it in a minimally invasive way. The only way to know definitively if it is in fact rogue Hodgkin's cells that were able to withstand the 12 ABVD treatments would be to undergo a surgical biopsy. Because of the small size of the area in question and its close proximity to my heart and major vessels and the need to go through my chest cavity, the surgery carries quite a risk. My oncologist and the several other physicians across a wide variety of practices that he consulted agreed that surgery should be avoided until we have a clearer picture of the likelihood of this actually being the start of a Hodgkin's recurrence.

Naturally, this was not the news that I wanted to hear. Luckily, Craig was there with me. We met at the Avon office - there was no one else there but us and my doc - it was so intimate that he wasn't even wearing his typical white lab coat. It felt like meeting with an old friend who unfortunately was delivering what could be some very bad news. It was eerily dark and quiet except for the bright fluorescent lights of the room that we were in. It was late afternoon and Dr. Dailey took the time to meet with us, explain everything in detail, and answer, mostly Craig's, many questions as I just kind of sat there in shock. It took me back to my first day of chemo when everyone around me just sounded like the parents on the phone in Charlie Brown - "wah, wah wahhhh."

We are all hopeful that it is nothing. I am still fighting this upper respiratory cold/cough that makes me sound like someone on the other end of a 1-900 number. We're hoping that that might have something to do with the hot spot. That the infection could be causing the inflammation in my chest, causing it to light up with the diodes. However, I am so lucky that I have a doctor that takes things seriously and is looking at this scan thoughtfully and carefully. As much as he apologized for not being able to give the "all clear" and schedule a date for me to get this damn port removed that he knows I am anxious about, he told me that he just couldn't comfortably say: "Ah, it's nothing. We'll see you in a year."

So, the plan of attack is get me healthy - get this bug out of my system. I'm now on a new antibiotic, a 10-day course and am continuing with the prescription cough medicine. I'm trying to get lots of rest, maintain my healthy diet and keep up with the yoga and walking as much as I can. The hope is that by doing this, on the next scan, this little hot spot won't rear its ugly little head.

Monday I go in to get my port injected with a type of solution that will hopefully break up any kind of fibrous tissue that might be causing a blockage that is not allowing for my blood return as God forbid, I may be needing to use this thing a lot again. Then Tuesday I have a detailed CAT Scan which is going to take fine slice pictures of the area in question to try to get some better clues as to what it may be. Then, in 6-8 weeks I enter the narrow tunnel for another PET-CT Scan. If this reveals that the spot is still there (or even worse, has grown), then it's time to slice me open to get in there and biopsy a good chunk of the tissue. If it is cancerous, the next step is a high-dose chemotherapy regimen called "ICE" then onto an analogous stem cell transplant with a chemo cocktail of "BEAM" ... the science of all of that blew my mind and as Dr. Dailey assured us, to even think about it as this point is jumping the gun. Here's hoping for a false positive.

So now, my fate is awaiting the identity reveal of this one-centimeter hot spot. And, I won't know if I'm cancer-free anymore for another several weeks. What can I do but do everything to keep my mind off it, keep my body strong, and stay focused on the fact that it's got to be a fluke?