Down a Few More Lymph Nodes

Though I’ve had many minor surgeries, I was most nervous about this one. It was only another lymph node biopsy, but I would be getting full sedation (the propofol- plus treatment) and my lungs were compromised from the recent pneumonia, the lymph nodes swelling in my chest, and the fluid that had been floating around them, plus I had a fever and subsequently, all that does to a body. I was afraid that the anesthesiologist would take me too low and I wouldn’t be able to come out of it, or that once they pulled the breathing tube, my own body’s mechanisms would be useless. 

I’m here, six days later, writing this, so obviously my fears did not come to fruition. However, it didn’t stop me from asking the anesthesiologist and anesthesiologist’s assistant and nurse anesthetist if they would be by my side the whole time.

“You’re not going to leave me, right? You’ll be there for the whole thing to make sure nothing happens?” They assured me that they at least one of them would be.

My mom took me in for the procedure. As is always the reality, unless you are the first case of the day (which I wasn’t), your surgery won’t be on time. So, we spent a lot of time waiting in different holding pens with all different types of people in the pens around us.

One young guy was particularly entertaining. I just thought he was funny, but my mom made the determination that he was wildly nervous – I realized she was right. He was showing off and talking it up to every nurse, secretary, other patient, in ear or eyesight. We heard all about how he pulled the hernia he was in to get corrected by lifting too many heavy kegs as a bar back.

He literally talked nonstop and had this manic laugh that you could tell was trying to masquerade his intense worry. He was a 30-year-old man reverting to 12-year-old boyish flirting ways. It was cute and real sad all at once. But we met back up again in recovery when he heard me talking about Cool Ranch Doritos in my drugged up state and yelled through the curtain: “Cool Ranch Doritos sound fucking awesome!” back to me in his drugged state. We both made it out okay.

While waiting in the pre-op pens, I was not feeling well, and not just because of the surgery anticipation. I was chilled and had a fever hovering in the 101/102 range and my pinpointed back pain was flaring badly. It was not easy to find a comfortable position. My mom tried to keep me entertained, and I dosed in and out of sleep. Hunger was raging as I had to fast from midnight the night before; it was approaching a 13-hour fast by the time I went in.

The operating room was bright and cold – everything gleaming stainless steel except for the very thin table where I would be transferred to that was covered in a very thin blanket. As the nurses and assistants helped pull me from the stretcher to the table, they assured me they’d be careful positioning me so as to not further hurt me back. They were gentle and kind and friendly, especially the surgical nurse, whose sole job, it seemed, was making sure I was comfortable until I went to la-la land. She kept stroking my arm and asking questions about my life. We hit on dogs and she knew that was the topic she could relax me with as I started yakking on about how much I love Sammy. She asked me why we named her that. I told her that she was a rescue who came with the full name of Samantha, but that her most recent family thought of her as more of a Sammy and that we fully agreed. “Samantha” is far-too refined a name for our dog who adores maniacally digging holes in beach sand, diving under water, and running with big sticks/branches.

The surgeon came over to my ear. I was all taped up and tubed up at this point and sucking pure oxygen from a facemask.

“Karin!” he cooed in his funny, sing-songy voice. “Karin! What are we dooooooiiiiiiiinnnnng?” They took my mask off so that I could say: “Taking some lymph nodes from my right side.”

“Yes! Yes!” he said, and also wrote the word “yes” in black marker alongside my armpit.

The facemask was replaced and the nurse told me to keep thinking about Sammy.

I heard the anesthesiologist direct me to take a few deep breaths and that soon I would be on my favorite island. I was skeptical, but sucked in as deeply as I could, desperately afraid that I would be awake when they sliced me open.

I remember the deep breaths and thinking about Sammy and then suddenly a very, very blurry ride to the recovery room. I remember asking whoever was pushing me if they got some good samples.  

“Yes, they did,” they told me. Likely, it was just a transporter who had no idea what I’d even had done, but it gave me the comfort to fall back asleep.

I don’t know this, but I felt like I was in recovery for only a few minutes before my mom was brought in and I could have saltines, though I wanted Doritos as much as my buddy on the other side of the curtain did. My mom relayed my grocery list requests to Craig who, though he thought it was a joke because it was so random, went ahead and picked them up for me: Cool Ranch Doritos (obviously), grapes, all-fruit popsicles, mud pie ice cream, “healthy” mayonnaise, a roaster chicken, frozen waffles, and a Cosmo magazine. It wasn’t a joke and it was all delicious over the course of the first few days home, just as I predicted.

As I sobered up, the pain settled in. It felt like someone opened up my armpit and ripped out a few swollen lymph nodes of tissue – because they had. But really, after just the first couple of days, I’ve had no pain there. Other pain, yes. Post-surgical pain, no. Just a little weak.

I’ve been very social these past few days since, with book club and dinner get-to-gethers and basketball watching with friends and a total girls fun/recovery day with my best friend since childhood, and tax filing and dining room remodeling planning with Craig. It’s been the life of a “regular” 30-year-old and I’ve been enjoying it. It’s just that in the middle of it all I’ve been battling shortness of breath, continued pain, immense fatigue, and coughing fits. But it’s not stopping me.

I already have the results back from the biopsy. Drum roll, please …. “Classical Hodgkin Lymphoma.” Wow. Original. It’s the same damn thing I’ve been dealing with since 2009. Even so, I have no regrets on getting it done, however, as now we can move forward in confidence. There will be many additional stains happening to the tumors and pathologists will be analyzing it for certain proteins that will help determine the best treatments. No matter what, we’ll get beneficial information from having a very recent sample to base treatment moves off of.

At first I was quite down on the news, as I wanted to find out that it was something else entirely that we’d be able to wipe out and I’d be done with it all. Then Craig reminded me that I probably would still have HL on top of that, and it’s doubtful that anyone would say it’s better to have two diseases than one. That logic was hard to argue with. This is not bad news – again – it’s just news.

What we’re calling “salvage” treatment, which is basically a nice way of saying really harsh treatment to melt the disease, starts this week, like maybe tomorrow. I don’t know what it will be yet or where or when I will start it. Waiting on word … . 

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.

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.