"I've seen 80 year olds with oxygen tanks do better than you!"

Hello everyone,

I think it's safe to say that I'm officially settling into the burbz. My parents recently moved from the house I grew up in in Eden Prairie to a townhouse in Eagan, and I must admit that things are not half bad. I've been biking, playing with the pup, eating balanced meals (aka not takeout, my NYC staple), and reading. I'd like to say that I've been digging into "the classics" -- this is what I told myself I would do with all this spare time -- but in reality I'm reading Tina Fey's Bossypants and a lot of P.J. Wodehouse. It could be worse -- at least I haven't descended into tabloid madness and begun devouring US Weekly. Who am I kidding; that will probably start next week.

Alright, enough small talk. Yesterday, I had a series of appointments to check to make sure my body would be able to handle the ABVD. Some context: chemotherapy attacks your body's newest cells -- both the healthy and malignant ones. Pretty much all of the cancer cells are new cells, so this is why it is so effective in ridding the body of disease -- though this is also why people lose their hair and their body becomes weaker and more vulnerable to infections. Anyway, the heart and the lungs are some of the oldest organs around, so these are generally the last things to be harmed by chemotherapy. However, the ABVD cocktail can harm both the heart and lungs in certain people, including the elderly and those whose bodies are already weakened before starting treatment (such as those with HIV, etc), so doctors always order a series of tests to make sure that both organs are strong enough to withstand the chemo.

The first test I had the pleasure of taking was the pulmonary lung test, which measures the strength and durability of your lungs. I'm in pretty good shape and in general don't get winded easily (unless, of course, I'm power-walking up the ginormous escalator from the 4/5 train at 59th Street. No matter how many times I climbed those steps I would still be out of breath by the time I reached the top), so I figured I'd ace this bad boy.

Wrong!

I don't know if I was just not doing it right, or if I do have borderline weak lungs, but this test SUCKED. It didn't help that the doctor was kind of a -- how to put this nicely -- "character", who talked to me like he was a drill sergeant, and I was his unwilling pupil. The test started by me clamping my nostrils to force me to breathe out of my mouth (eww, mouth-breathers) through this sort of snorkel like device that was connected to the computer. "Normal breathing," said the doctor. Easy, peasey. Then: "Take a deep breath and then blow out as hard as you can!"

This is where the trouble started.

If you inhale, and then exhale as hard as you can, it's hard to keep exhaling for more than a few seconds. Try it. You pretty much get all of the air out in the first 5 seconds or so. Well, this test forced you to squeeze out every last molecule of carbon dioxide possible without passing out. Needless to say, this test did not go well, and the doctor morphed into his drill sergeant alter ego. "You're not giving me 100%. I know you can do better! KEEP TRYING!" After a few more apparently unsuccessful attempts, he started to really get fired up. "Man, I've seen 80 year old women with OXYGEN tanks do better than you! STEP! IT! UP!"

Apparently 80 year old women with oxygen tanks have better lungs than me, so after about ten more attempts he finally he gave up and we moved to the next part of the test, which included more weird breathing "exercises", as well as a stint in a weird tube place where my oxygen was intermittently cut off and I had to just puff my cheeks. The whole process seemed pretty bizarre to me, but hey, that's science.

At the end of the tests, I asked him how I did. "Oh, you passed," he said calmly. In fact, my discharge sheet even noted that "the patient was cooperative and put in the proper effort." I am curious to see the kind of high praise he would have written for that 80 year old woman with the oxygen tank.

The next test was the cardiac echo (or echocardiography), which was much less eventful. I got to lay in the dark for 20 minutes and the cardiologist used an ultrasound to get various images of my heart. Not bad at all. At the end of the test I was told that, even with chemo poisoning, the ole ticker would be just fine.

That wrapped up all of the necessary pre-tests before the real fun begins. I have one more week of freedom before my first chemo appointment on September 4th, and I am planning on living it up.

As always, thanks for all your support and well wishes! :)

The battleplan

Hi everyone!

First and foremost, I want to say a HUGE thank you to all of you. Your messages, notes, and gifts have been incredible, and I am so thankful to have such awesome support from such a large number of people!

Now, down to business: I had my first appointment with my U of MN health team, who I am very excited about. My Oncologist is Dr. Bruce Peterson, who came highly regarded from a variety of different family friends and doctors in the area, so I'm confident that I have one of the best doctors around to attack this thing head on.

The good news is that his recommendation was pretty much aligned with that of NYU: Stage IIA, which will require 6 months of chemotherapy (each infusion will be every two weeks), and with no radiation (phew!). Radiation used to be the gold standard for treatment back in the Stone Age of the 1950s/1960s, but it was not as effective and caused a variety of secondary cancers. It is still used today to supplement chemotherapy in some cases. In my case, the doctors have recommended passing on it (for now) because a). the risks of secondary cancers and b). the Hodge has spread to various spots across my neck/chest, so it would take multiple different beams to really target it effectively.

Here are some upcoming dates I get to "look forward to"!

• August 28th: heart and lung tests to make sure both of those bad boys are strong enough for the chemo drugs
• September 4: Chemo #1. I was originally going to start next week, but I have a wedding I'm attending over Labor Day weekend, and I really didn't want to be drugged up for it.

Other things of interest:

• I will not be doing a port, which is sometimes used to aid in chemotherapy infusions. It is a little device that they insert surgically into your chest which then aids with getting the chemo drugs into you in a quick, efficient way. I was under the impression that most people undergoing ABVD chemo opted to do this, but my doctor said that it was not necessary, though he would do it if I wanted to. While the thought of endless pricks and needle searches for my veins doesn't sound like my cup of tea, the thought of having some weird device protruding out of my chest for 6 months also sounds pretty icky. Ultimately, I decided against it because I've been told by numerous medical practitioners that I have really "great" veins for this kind of stuff, so I thought I should put them to good use. If it ends up being too much, I can always get one inserted.
• Fertility issues don't seem to be as big of a concern as I thought. Your fertility may be damaged during and immediately after treatment, but according to Dr. Peterson, about 90% of people regain their fertility within a year after chemotherapy treatment. An added bonus: oral contraceptives, which suppress some of the ovarian activity, actually help preserve fertility during chemotherapy. Yay BC!
• A sidenote: he did say if I wanted 100% certainty that I'd be able to pop out some Jen Jrs that I could harvest my eggs. While I found that morbidly interesting in a Dr. Evil type of way, it would require at least three months of additional procedures before I could even start chemotherapy. I feel comfortable with my odds at 90%.
• Hair loss: I've heard some mixed information about this. On the one had, Dr. Peterson and the rest of the internet told me to prepare for it, since it is almost certain my luscious locks will fall out about two weeks after the first treatment. However, the chemotherapy nurse we spoke to after said that it doesn't always happen and that she had many patients who just had some minor thinning. I already shed a lot (just ask poor Scott, who routinely had to deal with my dark hair falling all over our pristine white bathroom), so I don't want to get my hopes up that I'll be one of the lucky ones. Wig/headscarf shopping will commence ASAP. Heaven forbid I wake up one day looking like this:
  
• I'm not "bulky". This is a term used to describe how large the various lymph node masses are. My largest one is in my chest and is about 5 cm. Anything under 10 cm is considered "non bulky", which is apparently a good thing.
• I asked Dr. Peterson how long he thinks the Hodge has been growing. He said probably a few years! This differs from what the NYU Oncologist said (he said a few weeks). I'm wondering if he was just specifically talking about the lymph node I was able to feel? As I mentioned in my earlier post, there are multiple different lymph nodes that have been affected, so perhaps the one I detected above my collarbone was one of the newer ones? From the research I've done, Hodgkins seems to be relatively slow growing, so Dr. Peterson's hypothesis seems more likely.

This is the plan, in a nutshell! I'm looking forward to having a few more weeks of (seemingly) good health which will be filled with the Minnesota State Fair, SUPing (stand up paddle boarding), a wedding in rural Wisconsin (and maybe even a trip to Madison!), lots of biking, and exploring the Twin Cities. 

As always, thank you for your <3 and support. :)

Well, at least my years of hypochondria finally paid off

Hi everyone!

Thanks so much for checking out my blog! I hope to provide regular updates for my friends and family and also create a resource for other young adults who were recently diagnosed with cancer. Seriously, cancer bloggers of the world, you saved me from going completely insane with worry, and I hope I can one day do the same for someone else who finds themselves in this unfortunate situation. So, if I go into a lot of depth about medical procedures, this is why.

I suppose the blog title "adventures" isn't exactly the best word to describe one's journey with cancer, but I'm trying to look at it in the most positive way possible. I live and breathe the humanities/social sciences, but in the past few years I've really become fascinated with public health and the science of the body, so I'm trying to put a positive spin on this situation and look at the next few months as a learning adventure in biology, chemistry, and anatomy.

So, what's the cliff-notes version of this experience so far? After doing an excisional biopsy on a large, firm lump above my collarbone -- more specifically an 'enlarged superclavicular lymph node', as what was determined per an ultrasound -- I was diagnosed with Hodgkin's Lymphoma, stage IIA. Hodgkin's Lymphoma is a cancer of the lymphatic system, which is part of the immune system. If left untreated, it will spread through your lymph nodes and eventually compromise your body's ability to fight infections, which is how it would 'do you in' in the past (I imagine this is not unlike how HIV/AIDS progresses without antiviral medication). However, today, it is one of the most treatable cancers out there. Some people would even go so far as to say it's one of the "good cancers".

If you want the lengthy version of my journey to get diagnosed -- and I warn you, it's pretty lengthy -- here it is:

It all started on the Fourth of July. It started like any normal day -- my boyfriend Scott and I were in line waiting for bagels at our favorite bagel place (if you ever go to Brooklyn, I highly, highly recommend checking out Le Bagel Delight in Fort Greene. You will not be disappointed). For whatever reason, I distractedly started rubbing my shoulders and also grazed my collarbone. WHAT IS THIS HUGE LUMP, I wondered. A hypochondriac through and through, I immediately went home and googled 'lump above left collarbone'.

Do a quick google yourself and see why this would be the absolute worst news for anyone with hypochondriac/OCD tendencies.

We had a fun day ahead of us for the 4th, and we were also leaving for Montreal on the 6th for a week, so I figured I'd go to urgent care just to make myself feel better and not worry about this while I had all this other fun stuff going on. This always eased my worries in the past; why would this time be any different?

So, Scott and I put our day on hold to go over to urgent care. After some small talk with one of the nurses, who told me she had a similar lump which quickly went away and I had nothing to worry about, the doctor came in. She was very no-nonsense to begin with, and became even more so after feeling the lump. "You need to get this biopsied ASAP," she said. She elaborated, explaining that this was a swollen supraclavicular lymph node, which could just be some sort of infection, but it is rare for this particular lymph node to enlarge for infection, and that often times it is associated with malignancy (she didn't go into detail as to which kind).

Needless to say, this was not the response I was expecting.

I told her about my upcoming trip to Montreal and asked if it could wait a week or so, and she said in the same matter-of-fact tone, "If you must, but get it looked as soon as you get home."

I power-walked back to our apartment and immediately googled the shit out of "enlarged supraclavicular lymph node, left side", which was in my discharge papers. The results were not pretty. In addition to a bacterial/fungal infection (which I was hoping I had), it can also be a sign of lung cancer, cancer of the thorax, stomach cancer, esophagus cancer, or lymphoma. Doing research on all of these, the only sort of cancer that would remotely make sense given my age was lymphoma -- specifically Hodgkin's, which is most common in ages 15-35 (the mid-twenties are especially common) and then those over 55. Still, Hodgkin's is very rare; according to the National Cancer Institute, it makes up only 1% of all cancers in the United States and you have about a 0.2% chance of developing it in your lifetime. I kept trying to tell myself there is no way I could be that unlucky.

While I was hoping this was some sort of fluke infection, I couldn't ignore that my lymph node met none of the criteria for benign swelling and ALL of the criteria for malignancy. Normal lymph nodes that are reacting to an infection are under a centimeter, are soft and are mobile. I could tell mine was much larger than this (the ultrasound confirmed it was 2.5 cm), was hard, and was fixed. This seemed very suspicious, but I kept telling myself not to really worry, because I had no other symptoms which are often associated with Hodgkins -- night sweats, fever, fatigue and weight loss (I wish) -- plus, I NEVER get sick. I also eat pretty healthily -- lots of veggies and minimal processed foods (except my occasional indulgence in Doritos) frequently bike to work (about a 15 mile round trip), and get out of the city for a good hike whenever I can. In short, I felt -- and still feel -- completely normal and healthy.

After an amazing week in Montreal where I almost -- but not quite -- forgot I potentially had cancer, it was time for me to get my biopsy. Now, this is where the internet came in extremely helpful. According to the American Cancer Society, there are multiple types of biopsies which may be performed on a suspicious lymph node, including:

• A fine needle aspiration (FNA), where the doctor uses a very thin, hollow needle attached to a syringe to withdraw (aspirate) a small amount of fluid and tiny bits of tissue from a lymph node or an organ in the body.
• A core needle biopsy, where the doctor uses a larger needle to remove a slightly larger piece of tissue.
• A excisional or incisional biopsy where the doctor cuts through the skin to remove the lymph node. If the doctor removes the entire lymph node, it is called an excisional biopsy. If a small part of a larger tumor or node is removed, it is called an incisional biopsy.

The first two are minimally invasive and just require a quick local anesthesia. It's an in and out procedure which doesn't leave a scar. However, Hodgkin's cells, which are specifically called Reed-Sternberg cells, do not always get picked up this way. I had read many accounts from other young people who had one of the less invasive biopsies and received a false-negative, which greatly delayed their diagnosis and led them to have to undergo treatment at a later stage.

So, I had all of this in my mind as I went to meet with my surgeon. I told him that the doctor at urgent care suspected the lump was an enlarged supraclavicular lymph node, which he confirmed via ultrasound. He also picked up a thyroid nodule, which are common and usually benign, but given the nearby lymph node it was a cause for concern. So, in addition to lymphoma and the other cancers listed above, I could also have thyroid cancer. I asked the doctor about the possibility that these were all just flukes and some weird infection -- I even asked about Cat Scratch Fever, which can also cause these types of swollen nodes -- he recommended we really investigate the most "likely cause", which would be Hodgkin's or thyroid cancer.

He said he could do a FNA that day, but I brought up my concern about it not picking up the Hodgkins cells, and he confirmed that was sometimes the case. So, I decided to skip the FNA and schedule an excisional biopsy, which is a straight up surgery which must be performed at a hospital and under general anesthesia. Oh goody!

Unfortunately, I had to wait about 2 weeks for this. I am a neurotic, impatient person to begin with, so this was torture. Finally, the day came and I went under. I awoke in severe pain with a huge slice above my collarbone (from then on it was then referred to as The Slice). 

I had read that this was not a painful procedure and that after a few days on painkillers you feel fine. Wrong! I never realized just how involved this area is in pretty much any movement you make. Turn your head? Lift your arm? Walk? Laugh? The whole area is affected. Rather than stitches, my surgeon used glue, so I'm wondering if this also factored into the extreme pain I had for the next 2 weeks. Even walking (or hobbling) around the apartment became a chore. More than one person remarked that I was walking like Gollum.

Unfortunately, my surgeon does not give biopsy results over the phone, so I had to schedule yet another appointment. He told me this is his standard policy, but I wonder if he could tell something was wrong and wanted to break the news in person -- I guess I'll never know. Of course, the next appointment I could get was 10 days later, even though it only takes them a few days to analyze the results. So, that sucked.

Finally the day came. There was some small talk and then the surgeon examined how The Slice was healing. After some more pleasantries about how nice this summer had been in NYC, he broke the news: Hodgkin's Lymphoma. While this was definitely a huge blow, I was prepared for it. While I do have a tendency to overdue it sometimes with my medical obsessions -- perhaps sometimes into OCD territory -- in this case my crazy researching really helped me accept the diagnosis and not completely fall apart. In fact, a few days later when Scott broke the news to me about Robin Williams' death just as I was getting off the subway, I had a much stronger physical reaction. I literally felt like I was gut punched. The diagnosis, by contrast, felt mostly just surreal, but at the same time I was weirdly happy to finally know what had been going on the last month.

The next step was to get a PET/CT scan of my whole body to see where all the cancer has spread. This is done for staging. For this, I was injected with radioactive sugar via IV (you read that right: radioactive. I had to avoid babies and pregnant women for 48 hours as to not share my radioactive goodness with their fragile bodies) and had to sit there for an hour to wait for it to be absorbed by my body. The reason they do this is that regular cells metabolize the sugar quickly and within the hour should have cleared it. Malignant cells, in contrast, hoard the sugar. So when you go through the PET/CT scan, the cells that are malignant and filled with sugar will "glow". About 20 minutes of claustrophobia later, I was done with my scans and then had to start the 'fun' task of finding an oncologist who could interpret the results for me. When I say fun, I mean hellish -- there will be a new blog post specifically talking about the ridiculous journey I had navigating the NYC medical landscape.

After many hours of my life I will never get back on the phone with rude (at best) and incompetent (at worst) insurance and medical staff, I was finally able to get an appointment with an oncologist at the NYU Langone Medical Center. This was my one positive medical experience in NYC. My oncologist was very thorough and knowledgeable. On top of that, he was also a nice guy. He read my scans and put me at a tentative Stage II, though this would depend on a few other tests. Here is how the staging for Hodgkin's is broken down (courtesy of Mayo Clinic):

• Stage I: The cancer is limited to one lymph node region or a single organ.
• Stage II: In this stage, the cancer is in two lymph node regions or the cancer has invaded one organ and the nearby lymph nodes. But the cancer is still limited to a section of the body either above or below the diaphragm.
• Stage III: When the cancer moves to lymph nodes both above and below the diaphragm, it's considered stage III. Cancer may also be in one portion of tissue or an organ near the lymph node groups or in the spleen.
• Stage IV: This is the most advanced stage of Hodgkin's lymphoma. Cancer cells are in several portions of one or more organs and tissues. Stage IV Hodgkin's lymphoma affects not only the lymph nodes but also other parts of your body, such as the liver, lungs or bones.

The stages are also broken into A or B. If, for instance, I was Stage IIB, I would have the above lymph node involvement, but also have the symptoms I mentioned above such as fevers, night sweats, fatigue, and weight loss. Since I do not have those symptoms, I was tentatively at Stage IIA. As far as I've researched, there is not a significant difference in terms of treatment/prognosis if you are A or B in any stage.

I mentioned that my stage IIA diagnosis was tentative and it depended on the outcome of other tests, which included a blood test for something called EFR, which I don't fully understand but do know that it is a marker of inflammation, as well as a....wait for it....BONE MARROW BIOPSY (caps to emphasize my terror in learning I would have to do this. I had read that this was one of the most painful parts of the whole Hodgkin's process). 

A bone marrow biopsy is done sometimes but not always to aid with staging. If you look at the stage descriptions above, Stage II means that all malignant activity is above the diaphragm, which is above the bone marrow. However, my doctor wanted to be 100% sure that there was no involvement -- if there was I would be at a higher stage. I had thought this appointment would strictly be a consultation; I had no idea I would have a huge needle injected into my bone and that part of my bone would be scraped off. 

Long story short, it actually wasn't too bad -- probably a 6/10 in pain and really more unpleasant than anything. The area was numbed, though I did feel a nasty sting and the needle went in to collect my bone marrow fluid. I then felt a lot of pressure -- I almost feel off the bed from all of this -- as the doctor scraped off my bone. Trust me, that's not a sound that is pleasant to human ears. And when all was said and done I just had a tiny dot to mark where all of this happened. No Slice 2.0. I'm hoping this means that I have a high tolerance for pain/medical torture, though as I mentioned above my healing from the biopsy was much harder than seemed to be the norm, so maybe my body just has different pain triggers. 

This was all done on Thursday, August 14th. I heard back from my surgeon yesterday (August 19th) that the bone marrow biopsy came back negative for bone marrow involvement (yay!), but I had a slightly elevated EFR count in my blood. Anything normal is under 20 (not sure of the measurements); I was at 30. Apparently this is not uncommon for people with Hodgkin's, so it was somewhat expected. If you're over 50 that is where it can get complicated and can possibly affect your staging. So, with the results of these tests he was able to confirm that I was at Stage IIA.

So, how will all of this treated? My NYC oncologist recommended I do 6 cycles of chemotherapy. The specific cocktail is ABVD, which is the standard treatment for Hodgkin's and is made up of the following chemotherapy drugs: Adriamycin, Bleomycin, Vinblastine, and Dacarbazine. Each cycle is made up of two treatments, which occur every two weeks. So, the entire process will actually be 12 different treatments of chemo that will last for 6 months. Many patients also do a month or so of radiation after the chemo, but my oncologist did not think this was necessary, especially since radiation increases the chances of developing other secondary cancers, such as breast cancer. 

I want to also reiterate that all of this happened in New York City, where I had been living the past two years. For a variety of personal, financial, and health reasons, I decided to move back to Minnesota with my parents for treatment. I have an appointment with one of the top Hodgkins doctors in the country at the University of Minnesota on Friday, August 22nd. He and his team will be going over all of my pathology reports and scans, as well as perhaps doing their own tests, so there is a chance that they might come up with a different stage or treatment plan. After a month of crazy surprises, I really hope I'm not thrown any more curve balls.

Thank you for taking the time to read through this little novella of a blog post. I would like to say that the rest of these posts will not be as long and dense -- this was the last month, so there was a lot of stuff that happened -- but I cant' promise this because I will have a lot of time on my hands while I'm drugged up in the coming months. I want to also say thank you to all of my family, friends, and co-workers for their support and kindness through this whole process. Ya'll are seriously the best and I am so touched by each and every one of you.

I will log off and leave you with a final thought (everyone, especially future employers, please pardon my French on this one):