Things I’ve learned about Hodgkin’s Lymphoma in a short period of time: it is rare and more commonly found in men; it affects young adults in their twenties to mid thirties and then has an increased rate in older people; it generally starts in the neck or chest region; and it is considered to be the “Mercedes” of cancers. So despite my gender, the other two facts accurately describe my situation. And I guess if you have to have cancer, good thing it’s the “good kind”. Hodgkin’s is often toted as one of the most curable forms of cancer with the first line of treatment – a chemotherapy regimen determined by your oncologists.
I remember waiting to hear what the prescribed treatment would be for me and what that would actually look like. Both of my new “partners” (oncologists) agreed that my prescribed treatment would be ABVD, a drug cocktail that would include four separate drugs some of which would be pushed through the IV by one of the oncology nurses and the others that were administered via an IV drip. No matter what the infusion method, it would appear that I would have to become very familiar with my (IV) pole. I have to admit I’d much rather have tried ‘strippercise’ than chemotherapy interrupted by my ‘pole dancing’ to the ladies room every thirty minutes. Regardless of the desired pole activities, both would have yielded the same end goal – a healthier me.
Dr. Z explained that ABVD would be administered via my fancy new titanium mediport, that was surgically placed on the right side of my chest with an annoying tube inserted into my jugular. It is also very fashion forward, there is an entire culture of people that actually choose to have subdermal implants. I must admit I do not understand the allure, even a little bit. However, I will attest that while I hate my port placement and bulging neck tube, I love my port because it means that no one tries to accost me with an IV in the arm. My drug cocktails are administered through it as is all of my blood work.
According to my prescribed treatment, I would be receiving ABVD every other Wednesday for six months, totaling six cycles and twelve individual treatments. My one day of chemo was an actual day, sometimes taking as long as five hours from start to finish. Twenty four hours later I had to return to the cancer center for my Neulasta shot, which was a necessity to help keep my white blood cell count up in order to fight infection.
Aside from those two days, I would have to go for blood work on my ‘off’ Wednesday to ensure that my counts were decent. All in all the regimen was not terrible. I could do anything for six months or at least I keep telling myself that.
Weird Science is one of those classic John Hughes movies from the eighties featuring Anthony Michael Hall, where the nerdy kids attempt to create the perfect woman. Of course she turns out to be much more than they bargained for, but they were certainly on the cutting edge of science and admittedly so are many of the tests that newly diagnosed cancer patients have to go through. I can only hope that when I emerge from the glass booth at Pulmonary lung function testing or after my radioactive PET scans, I will in fact be the perfect woman.
As a history teacher, my knowledge of science is quite limited. So limited in fact that when I was diagnosed with lymphoma I had to call my GP and ask him what a lymph node was. Luckily for me he was in no part surprised by my nonexistent knowledge of anatomy and went so far as printing me a map of lymph nodes in the body and explaining (very slowly) how they work and why mine are dysfunctional. At least then I would have some working vocabulary to wow my oncologists with at my appointments.
I have developed a new appreciation for the world of science as a result of this process. I still have a sketchy understanding of the technical aspects, but I can appreciate the technology for what it is and what it is capable of doing. And honestly some of it is really fascinating. My first PET scan was my first “science is so cool” moment in this experience. I am from a small rural town, so at this juncture we don’t have a permanent PET on any of the medical premises. Our PET travels from place to place and is only here on Fridays, which in some ways make it a little more exciting – like you are being admitted to an exclusive “day” club where the sound track plays radioactive on repeat. When you arrive with your pass to get in, you are brought to a lift that brings you up to a trailer with metal doors, it’s all very vogue. Then you are brought into a VIP room off to the side, where your attendee gives you the “good stuff”; a radioactive substance that will course through your veins for the next hour before highlighting all the cancerous parts of your body.
Now my first PET was truly amazing, I was hooked immediately on the process. My attendee, Tim, prepared me for the radioactive infusion. When he took out the “stuff” it was in a metal tube that looked like a rocket and when he opened the top a vapor poured out – well at least that is what happened in my mind. There wasn’t really a vapor, but it had a very Back to the Future feel to me anyhow. He pushed it through the IV and then I waited in the Radiology waiting room for an hour while it circulated through my blood stream and my dad made numerous glow in the dark jokes. After the hour you are brought back to the club and get to go to an isolation room for a truly ‘enlightening’ experience. The full scan takes about twenty five minutes, where you lie completely still as the Scan takes place and ultimately lets your medical team know where your cancer is located. It is used to determine staging and then later to check on progress and eventually as surveillance to confirm that your cancer has been kept at bay. It is often used in combination with CT scans that are completed much faster, utilize an iodine contrast, and still allow you to be around small children and pets. Both tests have done wonders in helping doctors accurately assess a variety of cancers.
In addition to the tests, the actual process of treating cancer is equally impressive. The drug combinations and actual procedures speak to how far science has come over the years. Hopefully, this Weird Science will create the perfect cure!
Pop culture and Wikipedia defines a “Meet-Cute” as a scene in film, television, etc. in which a future romantic couple meets for the first time in a way that is considered adorable, entertaining, or amusing.This type of scene is a staple of romantic comedies, commonly involving contrived, unusual, or comic circumstances. The technique creates an artificial situation to bring together characters in a theoretically entertaining manner. Frequently the meet-cute leads to a humorous clash of personalities or beliefs, embarrassing situations, or comical misunderstandings that further drive the plot (Wikipedia).
In my mind my meet-cute with a doctor was an accidental meeting after a generic appointment where we instantaneously had chemistry as a result of our witty banter and we rode off into the sunset on a gurney… or something like that. It certainly didn’t involve scheduling appointments with multiple oncologists and rounding up a team of doctors who prescribe treatments and essentially dictate my life over the course of months and maybe even years. As a confirmed commitment phobe, it all seemed a little fast. I was essentially entering a long term relationship after an initial meet (not so) cute. Where was the courtship and jewelry? Instead I got new patient information packets to fill out and a handy card allowing me access to my information and let’s not forget the hospital bracelets signifying my new relationship status. They really wanted everyone to know we were committed too, I got a new bracelet at every single appointment. Now how could I say no to that?
I have to admit that I was skeptical of finding an oncologist that would be best suited for me, but I was very fortunate and found two. Now I don’t want you to think I intended to or willingly entered into a poly-amorous relationship or anything, it just so happened that my first and second opinion oncologists were willing to work together to help me fight my Stage II (possibly bulky) Classical Hodgkins Lymphoma (Nodular Sclerosis). One was a long distance relationship with one of the best cancer centers in the US and the other had easier access being much closer to home. As long as they are in 100% agreement so am I. I leave the majority of the decisions up to them. In a lot of ways there is a lot less stress when you never have to choose where to go for dinner or what movie to go see or in this case when my appointments are and what treatment I will be receiving.
So while I didn’t quite get my Hollywood meet cute I got a medical meet cute that works for me. My close to home oncologist – Dr. Z – is in fact perfect for me or at least that is what I tell people when they ask what I think of him. Not only is he a phenomenal doctor, ridiculously knowledgeable, compassionate, and empathetic he is also sarcastic and humorous. Qualities that I cannot live without, especially if we are committed to seeing each other for a minimum of five years while we sort out this whole cancer thing.
I can honestly say that after hearing my diagnosis and the Halloween theme song faded out of the picture, the shell shock had already worn off and it was time to tell the masses. So how exactly does one tell their loved ones – family and friends – that they have cancer. My personal approach, just rip off the god damn band-aid. No matter how you phrase it the response is always the same…THE LONG AWKWARD PAUSE. It seemed like I would say the words and there would be radio silence on the other end of the phones for what felt like an eternity or if done in person a blank stare that lasts just long enough for it to be really uncomfortable for all parties involved. I have to admit that I much prefer the Long Awkward Pause to what follows as an encore – tears. I have never been a fan of ‘ugly crying’ myself, so seeing so many people tear up every time they saw me over the next few weeks pretty much made me want to make a break for it or avoid some people all together. I had my one evening of ‘ugly crying’ with some Ben and Jerry’s on the couch and hoped to leave it at that. Crying was not going to change my current situation, if anything it was certainly going to make it worse. So I thus banned my parents and best friend from crying as well. With the ban in place, life could go on until the next person who was unaware of the crying ban heard the news for the first time and went through the usual song and dance. Enter Long Awkward Pause and tears.
Once the masses become aware of the situation it all becomes so much more real and suddenly cancer is actually a part of your life. Now that everyone knows you have cancer the next step is explaining what that looks like. Not so easy, even for a veteran teacher of ten years such as myself. I didn’t have the knowledge to explain it. All I knew was that I had lymphoma. Google it and you get 25, 100, 000 results. Clearly just some light reading to get you started. And a word to the wise, never google what you don’t understand. It led my mom to an emotional breakdown thinking that every single person ever diagnosed with Lymphoma never made it past the five year mark. So sometimes having information at your finger tips is not so helpful and thus I had to ban google as well. Just in time too, because my BFF actually googled what to do when your best friend has cancer. The advice given did however yield some good laughs.
So we’ve all heard the expression that your life can change in an instant, but you don’t really believe that to be true until suddenly it is and your life does. For me, that instant was when I came to the realization that I have cancer. And we all know the word CANCER automatically elicits a fear response, much like the sound track that accompanies any horror movie. Some people even translate it to mean impending death before they even know the details. Thankfully, I was not one of those people but I will admit the faint sound of the Halloween soundtrack was playing somewhere in the back of my mind when I heard my diagnosis for the first time.
I had been waiting for a diagnosis of some kind for nearly six months by then. I had been to my primary care physician countless times and numerous specialists who had no real answers for my nonspecific and generally strange ailments ranging from being too weak to write the notes on the board for my students to the strange painful lumps on both of my shins. I started out anemic and then I had an ulcer and possibly gluten allergy. All of those could have been the root cause of my nondescript symptoms but going gluten free and drinking daily shots of blackstrap molasses for iron didn’t seem to help so I trudged on to more doctors to have more tests and biopsies. My big break came when I ended up at the rheumatologist, another specialist recommended by my GP who was drawing at straws to help me. I lucked out when he examined my shins and determined I had a skin condition known as Erythia Nodosum, which often signifies a more serious condition called Sarcoid.
On a side note, I wish I had been to the rheumatologist a few hours earlier because I had just had another huge chunk of skin on my shin biopsied hours earlier to determine what skin condition I had, but that is beside the point.
My mind was reeling from the very word Sarcoid, which I’m pretty sure I saw on House a few seasons ago and assumed it was a dramatization of sorts. Oddly enough, Sarcoid is real and can be a pretty serious lung disease that often accompanies many of my odd and seemingly disconnected issues. In order to confirm Sarcoid I needed a series of chest x-rays, a CT scan, and pulmonary lung function testing, ultimately followed by a mediastinal biopsy. So at least I knew what two out of four of those things were, so all in all I pretty much had no idea of what to expect. The process was a little more daunting when I received a phone call that I needed to see a Thoracic surgeon ASAP. I wasn’t even sure what a thoracic surgeon was or what his intentions were. Turns out his intentions were to slice open my neck, cut throat style to bipospy the medistinal mass detected by my chest x-ray and CT scan, most likely caused by Sarcoid. I say most likely because at the time there was a ninety five percent likelihood that Sarcoid was the culprit and the biopsy surgery was needed to confirm his guilt.
So imagine my surprise when I came to in recovery only to find out that the real assailant had been overlooked. I remember waking up and feeling a bit disoriented, it actually took me a few moments to focus and actually be literate enough to read the grey exit sign across from my cubicle. It didn’t take long for my parents and best friend to circle the wagons once I was cognitive enough to hold a conversation. As soon as they came into focus I knew something was amiss, their tear soaked faces and deafening silence said it all. They awkwardly stared at me, and when I asked for my status update the panicked exchange between Steph and my mom confirmed my suspicions. No one had to say the words, the five percent possibility of cancer was my one hundred percent reality. Minutes later my thoracic surgeon arrived on the scene and delivered the verdict – Lymphoma. Blood cancer. I asked if he was 100% sure and he said that he was. I may have taken pause for a moment before asking him what happened next. He didn’t have any details just yet and told me that an oncologist would be in touch. And then he walked away, leaving me to digest the news and some graham crackers because at that point I was starving (you can’t eat prior to surgery).