A blood clot was the price I paid for a (mostly) clean scan

Yep, you read that correctly, I have a blood clot. And not just any blood clot -- a blood clot IN MY LUNGS, aka a "pulmonary embolism." Whatever you do, don't google that. It may give you a panic attack like it almost gave me.

Before I get into the details of the blood clot (I shudder as I type those words), I should share some happy news. I spoke to my care coordinator, Kille, and the preliminary results of my PET/CT scan came back, and, according to the notes from my oncologist, I had an "excellent response". My lymph nodes all have shrank considerably to the point where there is no detectable cancerous activity! Unfortunately, Kille didn't call it "clear", as it seems like most people refer to a negative scan, but she did say that this is the closest to a being in complete remission as you can get without being in actual complete remission (remember, I still have to complete the rest of my cycles of chemo).  I am meeting with Dr. Peterson tomorrow to go over this in more detail, so hopefully I'll have a bit more information. Maybe I can even get him to declare it as "clean!"

Normally I would be jumping for joy with this news. But nothing can ruin a good buzz like a blood clot.

So, imagine my surprise after finishing my scan, coming home, and starting to watch a trashy Shocktober movie with Scott, when I get a frantic voicemail that I need to call the oncology team back about my scan ASAP. "This can't be good," I told Scott. Of course, at that time I thought it was that my scan came back showing more cancer, and that I would have to go on a more intense chemo regimin and get a stem cell transplant. My, how quickly the mind assumes the worst! So when I heard the term "blood clot", I was a bit taken back. It was once I heard the words "ER" and "right away" where I began to get it.

On the way to the ER at the U of M campus, which is about 20 miles from my house, I called back to see if I should go to a closer ER (this was after I spent some time on google where it kept associating pulmonary embolism with "life threatening"). This time, I got Kille who talked me away from the ledge and told me that this was not exactly uncommon with cancer patients, since cancer and chemotherapy both increase your chances of blood clots. However, it is still something to take seriously but that by going to the ER I was doing all I could.

Once we got to the ER, I rushed through the doors (not after setting off the security due to still being radioactive from my scan -- but more about that later). This didn't seem like a normal ER, since there was no waiting room or anything, but hey, I wasn't complaining. I was admitted right away (that is, once they determined I was not a terrorist and was only radioactive because of the radioactive iodine from my scan) and met my ER medical team.

They gave me the d/l: since the blood clot was detected in my scan, it was called an "incidental" blood clot, meaning it was something that showed up when they were looking for something else (ie if I still had cancer). The theory is that this clot most likely started in my leg as a deep vein thrombosis (DVT) and spread to my lung. Oftentimes when a blood clot spreads to the lungs, the person feels symptoms such as chest pain, dizziness, or shortness of breath (I felt none of the above). They ordered some blood work and an EKG to see if this was, indeed, life threatening.

Four hours and a river of anxiety later, everything came back normal -- my blood pressure was actually lower than usual, go figure -- and I was discharged. PYSCHE! I wish it was as easy as that. The blood clot changed the game. Now, as to make sure I don't get more clots, I have to take blood thinners twice a day for six months. I know what you're thinking, big deal -- more pills! It's not like you're not taking a bunch already! Well, my dear friends, the blood thinner is not in pill form; it's in shot form. So, twice a day I get to look forward to shooting myself in the stomach. And the most annoying part about it is that these blood thinners don't do anything for my current blood clot; I have to be patient and wait up to TWO MONTHS for that bad boy to go down. I guess it could be worse. Thankfully, the shots are pretty painless and quick to administer. But they're still shots. :(

Needless to say, it was an "eventful" 24 hours. Oh, the joys of the roller coaster ride of cancer!

Tomorrow, I will meet with Dr. Peterson to go over the scan in more detail, get an ultrasound on my leg to find the source of the clot, and get my 5th treatment of chemo. Here's to hoping things are a little less "eventful"!

Mindfulness is awesome, except when you have cancer

Growing up, I was an easy going, laid back, free-spirited little pup. This was, I imagine, largely due to my a very stable, comfortable upbringing. The things I worried about were what kinds of snacks my mom would bring back from the grocery store, or if my sister would steal my favorite article of clothing from my closet, or if my dad would lay down the law that I would have to start filling up the gas in my car with my own money. 

My "chill, man, it'll all work out" attitude lasted until about my junior year of college. Part of it was probably a maturity thing -- bills have to be paid on time! Groceries are actually pretty expensive! If I don't clean my room I'll get bugs! Part of it was also realizing that I would be graduating from college soon, which meant that I would be truly out of the nest and would need to decide on some life plans ASAP. The last factor I credit towards my transformation from hippie chic to (lovable) Type A control freak was studying critical theory in Paris. Nothing like a little depressing European philosophy to put you over the edge!

While I think that this new outlook has helped me become a more responsible, self-sufficient individual, it has also, you can imagine, brought a lot more stress into my life. Rather than living in the moment, I am strategizing for the future. Rather than just assuming things will work out, I assume they won't work out unless I do A, B, and C. This modus operandi is the same as millions of adults all over the world, which is why someone like Woody Allen can make an entire career out of his neuroticism. People relate!

Biologically, there is a reason for this -- cue Psychology 101 lesson: Our brains are constantly surveying external stimuli for potential threats. In cave man days, this might be an angry saber tooth tiger. Today, our chances of being attacked by an angry saber tooth tiger have gone down considerably, thanks to the arrival of civilization and all that comes with it (I imagine extinction helped, too). However, evolutionarily speaking, our brains lag behind, and are still wired in the same fight-or-flight way for a world that no longer exists. Since we are not constantly being chased by wild beasts, this fight-or-flight mode generally translates into anxiety.

So, how do we train our minds to live in a world they are biologically not ready for? How can we help our minds rationally evaluate what is a threat and what is not? How can we find our zen in the midst of chaos? Medication? Therapy? Religion?

My trick has been mindfulness meditation. Since my brain's natural state is to wander -- yours probably is too -- which can lead to feelings of stress or anxiety, I have to consciously tell it to calm down and come back into the moment. Meditation is how I do this. Taking a few minutes out of the day -- or, let's be realistic, week, if you're like me and often forget and/or "don't have time"-- to just sit back, breathe, and enjoy the moment really does wonders for one's mental health.

While I have incorporated meditation into my life for the past few years, it is easy to get wrapped up in life and sort of forget to take those extra few minutes to center myself. I have noticed this to be especially the case since starting treatment for The Hodge.

My pre-cancer life was pretty stable. I was living in a great neighborhood in Brooklyn with my boyfriend, I had a job I enjoyed, and I had a great five year plan, which involved going back to graduate school. I was even in the process of breaking Scott down to get a dog! Yeah, I would get anxious about the future and have a quarter life crisis now and then, but overall I think I was doing a great job of being present and living my life in a healthy, productive way.

Then, the diagnosis came and everything changed instantly. I had to quit my job, move out of my apartment, leave the East Coast, where I had been living the last three and a half years, and move back to Minnesota to live with my parents. Suddenly, everything I had been working for, both personally and professionally, had to be put on hold.

"Hey, it will almost be like a 6 month vacation! You'll have time to catch up on The Wire and read all the books you've been wanting to read but never had time for," people would say to help me feel better. "Think of this as your extended 'Me Time' You can relax! You can be mindful."

The thing is, I don't want to be mindful -- at least not like this. If there would ever be a time in your life when you would not want to slow down and just be present with your thoughts, it'd be when you're going through cancer. You don't want to 'live in the moment' when you feel like shit. What you want it is to fast forward a few months to when you're done with treatment and you don't feel like shit. You want to go back to your regular life.

But at the same time, constantly thinking about my post-treatment future -- will I stay in Minnesota or go back to New York? Where will I work? Will I still go to grad school? -- is exhausting, especially since I'm still too early in my treatment to know if it is even working.

So what's a gal to do? Is it possible to live in the moment -- even if the moment is shitty -- while also plan for the future and not get overwhelmed?

In the words of Liz Lemon:

Chemo #4...or, how I like to think of it, as 1/3 of the way done!

I'm happy to report that last Thursday, October 16th, was my fourth treatment of ABVD and also marked the 1/4 point in my treatment! This means that if all goes to according plan -- as in I don't have to delay treatment due to low counts or any mystery infection (cough, EBOLA, cough) -- I should be done with chemo on February 12, 2015! While that still seems like a LONG way to go, it feels really good to have some tangible progress under my belt.

The last treatment was pretty uneventful on the medical front. Luckily, my blood counts were still within normal ranges, though my hemoglobin was a little low, so I guess it's time to step it up with the leafy greens and red meat! Treatment itself is also becoming pretty routine, which I guess is a good thing, ie. I haven't developed any negative associations with with chemo.

So, what is a typical 'uneventful' day of chemo? Well, I woke up feeling pretty refreshed, ate a nice breakfast (eggs! can't get enough of them eggs!), and headed to the U of M Masonic clinic with my posse which included my mom and Scott. For the first three appointments, I had a check in meeting with my medical team to go over any side effects or other concerns, but this time it was just some blood work and then up to the chemo chair.

Luckily, I had another great nurse, Nadia, who got a good vein right away, though she did also urge me to get a port because of all the longterm stress the chemo drugs put on your veins. I'm still considering it, but the thought of having another surgery to get it inserted does not really appeal to me, especially since my veins seem to be holding up okay? It is really interesting to see how differently oncologists -- who deal with the more macro aspects of treatment -- and nurses -- who are the on-the-gound support -- view ports. Right now, I'm leaning towards just sticking with my IV infusion, especially if I keep having good vein luck, but it's good to know that at any point during this whole process I can always fall back on a port.

So, I mentioned above that this round was pretty routine...and it was from a medical standpoint, though I did have a fun surprise from Cathy, who has a talented colleague who also certified in Shiatsu massage therapy. Cathy kindly arranged to have her colleague, Gina, come to the chemo ward and give me a fantastic massage while I was being drugged up. It was incredibly relaxing and felt amazing. There are worst ways to spend the afternoon!

Then, after about 3 hours in the chair, the drugs were all in my system, and it was time to leave. By this point, I was RAVENOUSLY hungry and had a one track mind as to where I can get my next meal. The nurses say it's from the steroids, but I think it's just my natural appetite. Many people on steroids, particularly Dexamethasone, which I am taking, report that their appetite skyrockets, but I haven't really noticed a difference. As my parents like to say, I've always had a robustly healthy appetite (and, conversely, have a tendency to become a monster if I do not have food in my system every few hours). Thankfully, we found an amazing Mediterranean place called Wally's Falafel, where I gorged myself into a food coma. I guess I'm just a cool girl like J-Law.

As for side effects, thankfully, I've still been nausea free, but I have noticed the fatigue increase more after this treatment. Normally after chemo I feel normal the immediate few days afterwards, which I think corresponds with taking my steroids, but once I go off steroids on Day 5 -- so usually Tuesday after chemo -- I start feeling a bit more tired. This time, however, I noticed the fatigue almost instantly. Sigh.

The fatigue is still not too bad, though -- I spent the following evening introducing some unsuspecting friends to Castle Freak, a wonderfully over-acted mid 90s gem that just so happens to be one of Scott and my classic Shocktober gore movies. And if THAT didn't induce nausea -- there are some really disgusting scenes, which I don't want to spoil in case you happen to be a twisted consumer of shitty horror movies and might actually want to check it out (spoiler alert: the whole thing is on Youtube) -- I'm really not sure that chemo has a shot!

The Castle Freak may be scary/gross, but not scary/gross enough to make me nauseated! 

Aside from nausea, here are a few other updates on side effects (or lack there of) I've brought up over the last few weeks:

• Neuropathy: After my first treatment, I noticed numbness in my finger tips, which is called Neuropathy. Dr. Peterson mentioned that this, along with the fatigue, would likely increase as my treatments wore on. Maybe I'm lucky -- or maybe I've just become habituated to it -- but it seems like all of the numbness and tingling sensations have disappeared. Not complaining on this front!
• Bone pain: Many people experience severe bone pain after the Neulasta shots, which are given to increase the production of white blood cells. I had read many accounts that the bone pain from the shots is actually worse than the chemo, so before my first round of shots I was absolutely terrified I'd get some debilitating pain. After three separate rounds of shots, I'm happy to report that I have zero bone pain as a side effect. I suppose my mom, who is the one who actually injects me (I'm way too squeamish for that!) deserves a shout out. Thanks, mom! So, for those of you out there about to get your Neulasta shots, there is hope that it won't be so awful!
• Bloody nose: This has been new within the last few weeks or so. Whether it is the chemo or the changing seasons, every time I blow my nose it is tinted with blood. At first I freaked out about it -- because, ew, blood -- but my care team said that as long as your nose is not dripping, there is no cause for concern. The cause of this is likely that my platelet count was a little low at that point in my chemo cycle. 

Other than that, I have a few other dates on the horizon:

• October 28th: DUH DUH DUH....The interim PET/CT scan. I'm already starting to get scanxiety about this bad boy. In a nutshell, the hope is that all the cancer cells will be completely gone at this point. If that is the case, I'll still go through the full rounds of treatment, but the main importance of this scan is that, if clean, it is a very indicator that a future relapse is unlikely, and that after ABVD I will be done battling The Hodge forever.
• October 30th: Chemo #5 and hopefully the results of the scan!

Thanks to all for reading, and for all your support and good vibes!

Could Blake Lively pull off a Natalie Portman?

As I mentioned in my last post, I wanted to elaborate on the issue of chemo-induced hair loss. This is often one of the most traumatizing side effects for many people going through treatment for cancer, particularly young women. And yes, this includes this young woman.

Once you lose your hair, it's no secret that you're going through something major. Unless you're Natalie Portman or some other Hollywood scarlet who's in the midst of filming a trendy Oscar-bait Holocaust movie, if you're a young, bald woman, chances are you really stand out. As Arwa Mahdawi smartly observes in The Guardian:

"Hair is so bound up with ideals of femininity that, to some degree, the measure of a woman is found in the length of her hair. In the semiotics of female sexuality, long hair is (hetero)sexual, short hair is non-sexual or homosexual, and no hair means you're either a victim or a freak...in a sense, women's hair in the west functions as its own sort of veil, one which most of us are unconsciously donning. The time and money women spend on their hair isn't just the free exercise of personal preferences, it's part of a broader cultural performance of what it means to be a woman; one that has largely been directed by men."

Whether or not you buy into her argument is up to you. But I'm going to say that she's totally right; after all, how else can we explain Blake Lively's rise to fame? At best, she's a mediocre actress who just happened to marry People's "Sexiest" Man ("sexiest" is in quotes because, umm, he's no where near as hot as Ryan Gosling, who got snubbed). In my humble -- but really not so humble -- opinion, Blake Lively is famous because she has really good hair.

While I've never had Blake Lively hair per say, on a good day I was pretty happy with my hair. It was moderately thick, had some natural waves, and pretty much kept growing as long as I wanted it to. I generally kept it long, partially because I suppose I buy into the whole "long hair makes you hawt thing" -- I'm a product of my culture, so shoot me -- but also because it was just easier. Rather than loading up with a ton of jewelry or accessories, like many women with shorter hair often do, long hair became my accessory. This, coupled with the fact that messy, wavy hair has been "in" the past few years really solidified my identity as a long hair gal.

So I'm not going to lie that one of the first thoughts that went through my head after being diagnosed was oh, shit, I'm going to lose my hair. 

Naturally, I started to think of ways I could cheat fate. Well, not everyone loses all their hair. Some people just have some moderate to heavy shedding, I thought. Since my hair was relatively thick, I might be able to get by with a half of head of hair and still look normal. As a bonus, I would be going through treatment in the fall/winter, so hats could be my best friend. Maybe this wouldn't be so bad after all! Rather than keep my hair the length it was -- about 6 inches passed my shoulders -- I decided to clean it up a bit and get it cut into a long bob. And voila! It immediately became even thicker and healthier looking! Bring it on, ABVD!

As it turned out, ABVD was an worthy foe indeed, and my hair loss came right on schedule, just a little over two weeks after my first treatment. And we're not just talking about some shedding here and there that takes a few months to make you bald. We're talking about all of this happening in a day -- taking a shower, brushing out your hair, and pulling out at least a toupee's worth of hair, then going to work, continuing to lose your hair throughout the day, and finally leaving work trying to be optimistic that you might have, if you were lucky, maybe about a forth of your hair left. But deep down knowing that even that was probably optimistic.

So by the time I got home, I was feeling desperate. Really desperate. Britney desperate.

Luckily, my sister helped walk me off the deep end and offered to go with me to get a pixie cut to see if there was a way we could salvage my hair a little longer. An hour and $14.99 later (thanks, Fantastic Sam's!), it seemed like things were under control. Except for some moderate thinning on top, which could easily be covered up with a head band, it looked like I intentionally cut my hair this way. And while I would likely have never opted for a short cut in my pre-cancer life, I was pretty satisfied with how it turned out.

It sort of just looks like my hair is up, but whatever.

That was two weeks ago, and while I think I can still get away with wearing a headband and pretending I'm just too enlightened to bother with long hair, the rationalist in me has accepted that the end is neigh (I wish I had that much side bangs left!).

The next step was to pull out the wig I got courtesy of the American Cancer Society, which I had sort of forgotten about in my "I probably won't lose all of my hair" hubris. For some background: American Cancer Society generously provides free wigs and hair scarves to people going through treatment for cancer, which is beyond awesome of them to do. However, since they're, well, free, they are on the low end of the quality scale. I didn't really get this at the time -- a wig's a wig, right? So, when I brought home my new wig and tried it on a few times, I thought it looked okay.

So, two weekends ago for a friend's wedding I thought I'd give it a trial run. Big mistake! It's one thing to wear a wig around your house for five minutes here and there, but it's a whole other thing to be walking around, in public, while the wig is doing it's own thing and bunching up all over the place. Needless to say, it was incredibly stressful constantly fighting my wig's urge to fall off my head. It didn't help that I had only tried it on in dim lighting and didn't realize how...bold... "reddish blonde" highlights would look in natural lighting. While I had a blast at the wedding, I wish I would have left the wig at home, because it ended up being way more trouble than it was worth.

Wig #1 and I, in happier times

Balding more by the day, with my unruly wig looking like a sad Halloween relic made even sadder after a night of dancing, I was beginning to feel like I was not out of options. Luckily, the Meslows yet again came to my rescue and referred me to their wonderful stylist, Jerene Bailey, who owns Salon 61 in White Bear Lake, which I highly, highly recommend.

Jerene had been following my blog and had seen a picture I uploaded of my pre-chemo bob, so right when I arrived she had a few wigs picked out she thought might work. And boy, does she have a good eye! I settled on the second wig I tried on, which happens to be my exact hair color -- no more crazy teeny bopper highlights like last time -- and sits just an inch or so below the shoulders. Like the ACS wig, my new wig is made up of synthetic materials, but they're much better quality and don't get that crazy frizz that cheaper wigs get within a few minutes of putting them on. Plus, the wig itself is much more comfortable and stable, so I'm not constantly paranoid it's falling off. About $300 later (thanks mom and dad, you're the best!), the wig was mine, and boy am I grateful to look like my normal self again.

Wig #2 and I are getting along much better

Which brings me back full circle to Mahdawi's argument about how thousands of years of fetishizing long hair as the feminine ideal oppresses women. As I mentioned above, I totally agree with her, but I also realize that I am a product of my culture. I've grown up "buying into" the whole "long hair industrial complex", and after 26 years it's hard to change my tune. While there is no right or wrong answer as to how you want to present yourself to the world while battling cancer -- whether it be with a wig, headscarf, or in all your bald glory -- I think I'll be sticking with the wig for the time being. Because for me, that's how I feel the most "normal."

So, for anyone who's on the fence about investing in a wig -- whether you have chemo-induced hair loss, alopecia, or just want to try something new, here are a few helpful tips I've learned the last few weeks:

1.   Stay as close as possible to your natural hair color (unless it's Halloween, of course)

My red-blonde highlighted wig, which didn't look that much lighter than my natural hair at first glance looked much different in natural lighting. This would not be a problem if you're totally bald, but since I still have some hair that I plan to hold on to until the bitter end, the different tones can clash loudly if your wig moves out of position. At said wedding, I'm sure there were plenty of times where people were too polite to let me know that one part of my hair was dark brown and the other part was full of highlights. Unless that's the look you're specifically going for, which, in that case, let your freak flag fly, it's probably best to stay as close to your roots as possible

2.   Make sure it's fitted right

Luckily, wigs can accommodate a wide variety of head sizes and shapes. If it's too small, buy it in a larger size. If it's too large, you can go to a stylist who will remove some of the slack (I'm not sure what else to call it) to create a tighter fit. This will greatly help your wig stay in place and will make your life a lot easier.

3.   Invest in a ton of headbands 

Even the best wigs can sometimes look a little "wiggy". Adding some other accessory -- whether it's a hat or headband -- takes the eye away from the "part line" of the wig, which is often the part that looks the most fake in a wig. As an added bonus, headbands create even more structure for your wig, so it's more likely to stay in place.

4.   Carry a brush at all times

Unless you're splurging for a wig made of human hair,  which can easily run northwards of $1,000, you'll probably be wearing a synthetic wig. When well maintained, it's really hard to tell the difference between that and real hair. When left to its own devices, however, it snarls up and gets all kinds of crazy. The easiest thing you can do to tame it is give it a good brush-through a few times a day. As someone who was a I-will-only-brush-my-hair-after-I-shower kind of girl, this is a difficult habit to get used to, but it really makes all the difference.

5.   Treat Yo Self

I cannot stress this enough. If you're going to wear a wig everyday for a few months, get something that looks and feels good. While I am so grateful that ACS offers free wigs, I highly recommend investing in a higher quality wig for day-to-day wear. Your sensitive little scalp will thank you. I'm as cheap as they come -- living in NYC will do that to a person -- but after breaking down the total cost by day, it really isn't that bad (it's definitely less than that daily latte!) 

Chemo #3: A big improvement

So, if you remember correctly, chemo #2 did not go so well. My white blood cells (WBCs) were extremely low -- almost low enough to postpone treatment -- and my veins were very uncooperative, leading two multiple uncomfortable jabs in my arm and some pretty intense bruising.

Well, I'm happy to say that chemo #3, aka the chemo that represented me being 1/4 of the way done with ABVD, hopefully forever, went MUCH smoother. It turns out the Neulasta shot, which stimulates your blood marrow to make more WBCs, really works wonders! My WBCs were at 5,800 per microliter (mcL), which is within the normal range for a normal person not going through chemo (the normal range is between 3,300 to 8,700 WBCs). Adding on to the good news, my neutrophils, which are the part of your WBCs that are responsible for fighting infections -- probably the most important factor which determines if you can get chemo on time -- were at 3,400 (the normal range is between 2,500 to 6,000). For comparison, my numbers last time were at 1,500 for WBCs and just 100 for neutrophils. Aka it was a miracle that Bubble Girl didn't pick up any weird infections during that week or so where I had virtually no immune system (thankfully, Ebola was yet to penetrate U.S. borders at that time).

I really couldn't be more excited about these blood results. The last few weeks have been really annoying avoiding potential germs. I definitely wasn't perfect -- I still ate out and socialized -- but I was always paranoid that I was cheating fate. To compensate, I washed/sanitized my hands all the time, OCD-style, to the point where I now have multiple painful hangnails from dry skin. I'm sure the arrival of this chilly fall weather isn't helping moisturize my skin either.

Of course, I don't want to get too cocky with my swanky new Neulasta-super-immune system and revert back to my normal scummy ways, but I must admit that it is nice not to have to be so careful all the time. When I was first told I would have to have my mother jab me with a Neulasta shot after each chemo, I was really disappointed. As I mentioned in my chemo #2 post, most doctors hold off on ordering a Neulasta shot until things get really bad, since there are some other potentially bad side effects that come with it, which can include severe bone pain (which, thankfully I didn't experience last time) and, more troubling, the potential to potentiate the negative pulmonary effects of Bleomycin (the B in ABVD). My doctor told me to notify him ASAP if I was having any problems breathing or wheezing, but luckily I haven't experienced anything yet.

So, it's kind of a blessing and a curse at the same time. On the one hand, I have a regular immune system again, so my chances of being hospitalized from a routine infection go way down and I can live my life without worrying about germs all the time. Additionally, there should be no reason that I will have to postpone any more chemo treatments, which is great because ABVD is most effective when given on a tight schedule of every 14 days. Plus, who wouldn't want to get this crap out of the way as soon as possible? On the other hand, it could be wrecking havoc on my lungs. I may bring up dropping the Neulasta later on, as some patients I've read about have done successfully, to try and offset this risk, but for now I think I'll stick with it since I haven't noticed anything funky. I wish we lived in an age where science figured out a less toxic way to treat people with life-threatening issues, but until then I guess I'll have to keep telling myself, hey, a little lung damage is better than dying.

The other good news is that my veins were MUCH more cooperative. I think the main thing had to do with having an excellent nurse, Haley, who was all business about finding that perfect bouncy vein and striking it at just the right angle. She was flawless. And unlike last time, this vein didn't randomly block itself off, so I was able to do all my pre-chemo nausea drugs AND the chemo drugs with no problems. And almost 2 days later, there's still no bruising. All and all, I was in the infusion chair for about 2.5 hours -- a big improvement from the last two times which were more like 4 hours. Don't worry, though, I still had plenty of time to catch up on gossip magazines courtesy of the wonderful Jenny Meslow, as well a chance to watch some Gilmore Girls with my mom (naturally, Scott zoned us out in favor of solving riddles on his Gameboy. So Ron Swanson of him). But seriously, guys, Gilmore Girls is on Netflix right now! Why are you reading this blog when you could be binge watching it (am I right, TV twin, Heather??)?!

As for some updates on other common chemo side effects:

• I still have yet to experience any nausea! And this is after yesterday, one day post-chemo, where my dad and I severely overdid it with some greasy Dominos pizza. Yay!
• I've noticed a bit more fatigue, which feels like a lot like a hangover -- not on the nausea front, thank god, but in the sense of not having motivation. Luckily, this still isn't too bad and is mainly only for a few days or so. As I mentioned in my last post, really forcing myself to be productive on those days usually makes me feel better, both mentally and physically. Having a job that forces me to have a set schedule has also been helpful.
• Unfortunately, the hair loss came right on schedule. Two treatments ago, on September 18th, Dr. Peterson warned me that the hair loss would likely come any day now (usually it starts within 2-3 weeks after your first treatment. My first treatment was on September 4). Yeah, yeah, I thought. Since my hair felt thicker than ever with my new bob, I thought I would be able to defy the hair loss demons. After all, not everyone loses all their hair on ABVD (though most do). Maybe I'd be one of the lucky ones. Well, what happened with Icarus flew too close to the sun? He got burned. And as did I, dear readers. Just two days after that infusion, on a Saturday, I started to notice more and more hair coming out. Well, maybe i'm just going to shed a little. Maybe it will hardly be noticeable, I hoped. By Monday, it was obvious that this wasn't anything close to normal amounts of shedding. It started after my shower where I brushed out enough hair to make a very generous toupee. Unfortunately, it was all down hill from there: from the time I arrived at work to when I left in the afternoon, I literally shed another half of a head of hair. It didn't help that I naively wore a beige cardigan that day, which generously showed EVERY strand of dark hair that fell out. Long story short, I went to the salon and did go through with a Claire Underwood, though it's shorter and thinner than her luscious locks. I've been able to get by the last week and half with that 'do coupled with a headband to hide the worst of my budding bald head, but I'm not sure if my remaining locks have much time left in this world, so I decided to splurge and get a really nice wig. Believe it or not, this paragraph is just the tip of the iceberg of my thoughts of chemo-induced hair loss. There is more I'd like to share on this topic, so I am planning a separate blog post that will be up shortly. Lucky you!

As you can see, this was a big improvement from last time. However, there is one other thing that I'm a little nervous about, in addition to the potential lung issues associated with the Neulasta and Bleomycin. Remember way back in the beginning when I was just a young, bright-eyed pup who got a biopsy of her large superclavicular lymph node and hoped it was something random like Cat Scratch Fever? Well, needless to say we all know how that ended. Though after my scar began to heal and I no longer had pain at any sudden neck movements, I sort of forgot about the whole thing. Well, for whatever reason, my neurotic brain decided to start palpating the area last week, since it's no longer tender and I was just a little curious as to how it felt. To my horror, it felt like there was still a lump there -- or, more sinister, a lump that grew back.

To calm myself down, I reasoned it was most likely just scar tissue. After all, The Slice was pretty intense, and while it's no longer tender, it's still red and still healing. Still, it was hard to shake that feeling of what if the lump is growing back?? According to other Hodgkins patients who have multiple palpable lymph nodes on the neck, collarbone, or under their arm pits, they were actually feel the lymph nodes shrink down with each round of chemo. What an amazing feeling that must be! In my case, however, the supraclavicular lymph node was all I could feel from the start. I also have another small lymph node closer to my thyroid, which I've never been able to feel, as well as a big 5 cm one in my chest, behind my skeleton, which also means that was beyond my ability to feel it. So, I've had to just hope that things are shrinking, rather than have the luxury of being able to feel them shrinking with my own hands. For someone with control freak tendencies, especially as it relates to health issue, this has been very unnerving.

Not being able to physically feel the lumps go down is torture.

I brought this concern up at my last appointment two days ago, and unfortunately I didn't get the reassurance I craved. Dr. Peterson was on vacation, so I saw a Nurse Practitioner. While she was great and was super knowledgeable, she was not as familiar with my case as Dr. Peterson. She did look at my post-biopsy scans and thought she did still see some continuing activity in my superclavicular area, which would indicate that my surgeon did not fully remove the entire node which means that might be what I'm feeling, but she couldn't be fully certain without taking more time to really analyze the results. She then felt it herself and couldn't give me a concrete answer, though she though it was more likely it was scar tissue. What makes it also hard to tell just from touch alone is the location, right above the collarbone, where there are a ton of muscles, which can also feel similar to lymph nodes. Of course, if it's not 100% certainty I'm still going to worry. Unfortunately that's just how this ole noggin operates.

So, on that happy note, I'll leave you with a few important upcoming dates that I'm "looking forward to":

• Thursday, October 16 is my next chemo infusion (4/12 aka 1/3 of the way done!). Hopefully this will go as well as last time!
• Tuesday, October 28 is an especially important date, as this is when I will be getting an interim PET/CT scan to see if the chemo is doing its job and killing The Hodge. The best case scenario is that the scan will come back completely negative, which is fairly common (I can't find the exact statistics, but they're pretty good). Even if this is the case, I will likely still continue with the next 4 cycles (8 treatments) of ABVD as a sort of insurance that ever last cancer cell has been obliterated. What would be a less great scenario, but would still be okay news, would be if there was a significant shrinkage in all malignant nodes, even if there is still a little bit of hodgy activity going on. The worst case scenario would be if there was no reduction -- or, even worse -- an increase in activity. If that is the case I will likely have to switch to a more intense chemo regimen, which would open up a whole new can of worms. If you haven't noticed I'm kind of a perfectionist when it comes to, you know, killing cancer, so the moral of the story is that I'm really hoping for a clean scan.
• Thursday, October 30 (the day before my beloved Halloween) is my return visit with Dr. Peterson, where I will hopefully get my scan results. Oh, yeah, and I also have chemo #5. Whoo hoo!

As always, I want to say a HUGE thank you to all of you who have reached out, sent cards and gifts, and have generally just been fantastic human beings throughout this whole journey. I want to specifically give a shout out to both my family and the Meslow family, who have been beyond amazing this whole time. I suppose an even more specific shout out is in order for my boyfriend Scott, who has moved from NYC back to Minnesota to be with me during treatment. What a mensch!

FDR and the art of mind over matter

Unless you've been living under a rock these last few weeks, you've probably heard that Ken Burns' latest documentary series, The Roosevelts: An Intimate History, recently premiered on PBS. Over a series of 2-hour installments broken down by era, the film chronicles the rise of the Roosevelt family starting from when TR was a young pup to the rise of FDR, the New Deal, and WWII to, finally, Eleanor's activism in the 1960s. I have more time on my hands than usual, but I don't have that much time to have seen all of them - we're talking about 14 hours of Ken Burns here - so I've cherry picked the episodes I'm most interested in, which all center around FDR.

Why FDR? Because FDR has always been my favorite president. Sorry, Doug, I will never be on board the Washington bandwagon. So Washington stepped down after two terms a didn't declare himself king? Big deal. FDR saved the country - twice! - and created some of our must beloved social safety programs that have allowed millions of Americans to have a better life. While my love affair with our 32nd president goes way back, it intensified in the last year I worked at the Roosevelt House Public Policy Institute at Hunter College. I literally got to work in his former home! What a guy!

Not to mention he was a total babe in his younger years (Ryan Gosling, anyone?!)

Okay, so why am I gushing about FDR in my cancer blog? After all, the man had polio, not cancer.

From a medical perspective, comparing cancer to polio is like comparing apples to oranges, but his outlook on dealing with a serious medical issue really resonated with me. I have been told by multiple people that I am handling my diagnosis almost creepily well, which I'll take as a compliment. The way I've been processing it is by looking at the facts rationally, reasoning that all the odds point in my favor. This is not to minimize my condition in any way. I'm well aware that treatment doesn't work for everyone and that people do, in fact, die from Hodgkin's. However, it has a great prognosis overall, which is even better if caught early (thankfully, mine was). These are odds that any gambler would be happy to bet on. 

FDR, though, was not that lucky. Within days of being infected with the polio virus, he was effectively paralyzed from the waist down. Nothing he did - no massages, acupuncture, or hydrotherapy - did anything to bring back the sensations in his legs. Yet he never gave up - even when he most likely did. I'm sure this is a point of contention among historians - many argue he went to his grave believing there was still something he could try to cure himself - but I think there's enough evidence to infer that FDR accepted he would never walk (in the traditional sense), and instead put his efforts into appearing that he could, both for his own mental sanity and for his political career. After all, it is highly unlikely that he would be elected three times if the nation truly perceived him to be a "cripple", as his Republican pals liked to call him.

That is sort of where I'm at now, minus the dim prognosis. I can't control if my treatment will work (though I hope it does), but I can try to keep the appearance of having a normal life. I am working part time, staying active, seeing friends, eating my weekly Chipotle, and even indulging in the occasional beer or two. There are some days where I feel like just verging out, which is totally fine, but even on those days I force myself to at least do one thing productive. It sucks while I'm doing it, but I always feel better afterward. You know, like doing burpies at boot camp. 

This is not to say that I am bottling up my feelings -- quite the contrary. It is to say that I think FDR and I share a personality trait that if we psyche ourselves up to think things are normal, we feel normal. 

Of course, I am still in the early days of my treatment. It is quite possible in a month from now that I will have become a curmudgeony little hermit who frequently yells "GET OFF MY LAWN" to any normally functioning human beings. In fact, that's probably pretty likely. But for now, I'm going to channel my inner FDR and keep up his mantra of mind over matter. 

(Swoon).

Chemo # 2: A bit of a roller coaster

Howdy, ya'll!

First and foremost, thanks so much for all your kind words, emails, cards, and care packages. You are all so fantastic! Other updates from awesome people: Team Roosevelt House (a group of my former Roosevelt House colleagues), participated in an indoor cycle event to raise money for the Lymphoma Research Foundation. Here's a great picture of RaeLyn and Amanda! Thanks so much for werkin' it!

Also, my fabulous DC friends are running the Prevent Cancer 5k tomorrow, with proceeds also going to the Lymphoma Research Foundation! Special thanks to Anna, Abram, Matt, Heather, Rachel, Sophie, Bryant, Dan, and John! There is still time to donate to their fundraiser, so if you're feeling like dropping some dough, please check out their donation page here. Check out this awesome Team Jen swag Anna created. Such a crafty gurl:

Awesome Team Jen stickers

Flashy Team Jen buttons

In other slightly less fun news, I had my second chemo treatment on Thursday, September 18th. While for the most part I would say it was a success, it was not as seamless as my first treatment. As I've mentioned, I've been feeling great -- no nausea and minimal fatigue -- and I've been basically been living my life as normally as possible. In fact, this feeling of normalcy has caused me to, at times, second guess my decision to move from NYC to Minnesota for treatment, since I'm not the invalid I was fearing I'd become. Well, let's just say that after the mini roller coaster that was Thursday, I feel much better about my decision. But why open with 'the bad'? Let's start with the good news from my last chemo session:

The good:
ABVD chemotherapy is cumulative, which means that your side effects often get worse as treatment goes on. Apparently, though, your first treatment is very indicative of how most of your treatments will likely go, so the fact that I didn't have any nausea is a very good sign that I will probably be one of those lucky few who escape the awful nausea cycles! My lack of nausea is probably due to multiple factors, such as my super intense anti-nausea medications, my (relatively) active lifestyle -- Dr. Peterson said keeping your body active is a great way to combat nausea and it's other counterpart, constipation, and that I should continue to push myself through out this process (but, of course, to know my limits), and also maybe a bit of genetic luck, which I haven't had much of lately (you know, getting Hodgkin's lymphoma and all) and feel grateful for now. So, I consider this very, very good news.

That being said, the fatigue will likely increase. So far, I have felt minimal fatigue, and I hope it stays that way. The initial three days after chemo, where I take steroids to combat nausea, are particularly good at combatting fatigue, since they are also "uppers", which basically give you the energy of someone on speed. Many people actually complain of having too much energy, which prevents them from sleeping. For the most part I've been sleeping okay now that I've given in to my heating pad dependency, but I do think that the steroids are part of the reason I haven't felt like I was hit by a bus.

The other side effect I mentioned earlier was that I had felt some tingling/numbness in my fingers, which is due to the "V" drug in ABVD, Vinblastine. This is called neuropathy, which will also likely get worse as time goes on. It's pretty annoying, but better than nausea. Dr. Peterson also mentioned that this would be temporary and should hopefully go away a few months after treatment is over.

Also, I got a part-time temp job, which will be 20 hours a week through the end of November! I am working for the Allina Health Hospice Foundation doing some administrative and development work. Initially, I thought it would be a little morbid, as someone undergoing treatment for cancer, to be working for an organization that deals with end-of-life issues. However, the organization does great work and I do think it's a very important cause. A lot of unnecessary end-of-life suffering could be alleviated if hospice care was more common. I'm very thankful for the opportunity to work for a cool organization that gets me out of the house to provide my days with some more structure AND to be getting paid money that does not all have to go to NYC rent. A special shout out to my sister Rachel, who works at the temp agency that works with Allina, for getting her sissy a job! :)

The bad:
Alright, so the title of this blog was "A bit of a roller-coaster", and this is where the "bad" news comes in. I put "bad" in quotes, because I don't want to be overdramtic. There were some roadblocks and some not great news, but apparently nothing was too out of the ordinary. Things just didn't go as well as they could have, so the paranoid, anxiety ball I can morph into during times of stress automatically assumes the worst. That's just how I'm wired, unfortunately. So, without further adieu:

Before each chemo treatment, every patient has to do a complete blood count (CBC) test to make sure there is nothing too out of the ordinary. This is done because chemo often does a number on blood counts. With ABVD it is particularly important to stick to a 2 week schedule, as that is how it's most effective, so even if there is something funky up with the CBC, they usually push ahead.

Well, I had my appointment with Dr. Peterson prior to my infusion, but we didn't have the full lab results back. What we were able to see was that my white blood cell count (WBC) had taken a dramatic tumble, from 5,200 before my first infusion to 1,500. For context, a normal range is between 4,000 - 11,000, so I did start off on the lower end of what was considered normal, probably due to The Hodge. Now, in and of itself the WBC count doesn't mean too much -- what it is important is what the neutrophil count is. Neutrophils are the parts of your WBCs that fight infection -- basically they are the back bone to your immune system. Dr. Peterson was fairly confident we'd be able to move forward with treatment as planned, but he did say if the neutrophils were too low that we would have to postpone treatment until my counts went up, something I did NOT want to hear. Not that I get "excited" for chemo, but each one means I'm closer to being done, so having to postpone is really not something that appeals to me.

Since my meeting with Dr. Peterson was at 9 am, and I didn't have chemo until 12:30, they told me they would keep me updated by phone. To kill some time, my mom and I met Jenny Meslow in her fantastic office at the Center for Bioethics at the U of M, and met some of her great collegues and then went out to lunch (thanks so much for treating us, Jenny, and for the delicious homemade wild rice soup!) In the midst of this, I got a call from the head nurse, who informed me that my neutrophils were SUPER low. My counts were at 100, where the normal range is between 1,600 and 8,300. This put me at extreme neutropenia (which means an abnormally low count of neutrophils). For reference, according to Mayo Clinic, anything under 500 puts you at risk for not only regular external infections, but also infections from bacteria normally present in your mouth and digestive tract. Basically, the means that I have the immune system of a sickly newborn and I have had to become bubble girl.

Luckily, after some back and forth, my medical team ultimately decided to move forward with treatment as usual, with a condition that I have to add one more step to my treatment: a Neulasta shot, which is injected 24-hours after treatment to stimulate your bone marrow to speed up production of WBCs. They do this to help prevent any sort of severe infection that can land a patient in the hospital. This is not exactly uncommon for patients undergoing ABVD, but oncologists try to hold off unless it's absolutely needed, because it can increase the lung damage caused by the Bleomycin (remember when I had to do that awful pulmonary function test? That was to make sure my lungs were strong enough to withstand the Bleomycin, which apparently they are, but that does not take into consideration the extra damage that will be caused by the Neulasta). Usually, Neulasta is given later on in treatment -- if it's given at all -- so I was bummed that I had to do it right away. In the back of my mind I have a feeling this is a bad sign for my prognosis, but my medical team assured me that it shouldn't have any effect, and I probably just have a more sensitve bone marrow than other patients. I hope they aren't stringing me along.

So, more on Neulasta. I could either come in the next day and have them do it, or take it home with me and administer it myself (and when I say myself, I really mean have my mommy do it, because, gross. I also want to point out that when my mom was going over how to do it with the pharmacist, the pharmacist had to correct her from saying "so, when I jab it in..." to "when I insert it in..." Gulp). I decided since I'm going to have to do it after EACH treatment, I might as well just get used to doing it at home. And, spoiler alert, my mad scientist mother did a great job. :)

Though to backtrack a bit, when the pharmacist brought it out, she and the nurses were really giddy. Why? Because EACH dose of this stuff costs $5,600, and oftentimes insurance does not pay for it, or else charges a ridiculously high co-pays. The reason they were all so giddy is that I had to pay a whopping $5 for it. I just can't believe that people who have different insurance could theoretically be on the hook for the whole cost of this drug, which, for 11 treatments, would be $61,600. Just. For. That. Drug.  INSANE! Another fact about Neulasta: many bloggers I've read seem to think this is actually worse than the chemo, because it can cause severe bone pain. Usually this happens about 24 hours after the shot is administered. So far, I feel fine, but it's only been about 15 hours. I'm keeping my fingers crossed that I will have the same luck there as I have with the nausea.

$5,600 for this? Is the active ingredient GOLD?

Alright, so the next thing that didn't go as well as last time was administering the IV. Last time, it was a breeze and my nurse got it in right away. This time, we switched up arms as to not "use up" one vein. Rather than using a vein on the top of my arm, my new nurse used the inside of the arm on my right side. It started off relatively uneventful; the IV went in just fine, though it stung quite a bit more than last time, because the inside of your arm is more sensitive. As usual, I started off with a mix of three anti-nausea drugs: Aloxi, Dexamethasone, and Emend. All of those went in fine. However, when we were going to start the actual chemo cocktail, we ran into a problem. My vein just sort of blocked itself off and wasn't having anything. After about 15 minutes of trying to fix it, my nurse gave up and said that it was time to try a new vein...aka I would get a new prick. Sigh. So, we went back to my left arm to use the same vein that worked so well last time. However, after 15 minutes of unsuccessful attempts to get the first vein to work, my nurse had gotten a little flustered, so when she went in for prick #2, she missed the vein. Thankfully, she acknowledged that she was getting flustered, and asked for another nurse to help out. Luckily, we got the money shot and we were able to progress normally. Still, two unnecessary pricks = Jen was not a happy camper. And, the icing on the cake is that ALL of these pricks caused bruising. Tears.

What was interesting about all this vein dramz was learning about how nurses and doctors oftentimes have different takes on certain things -- like ports, for instance. Doctor Peterson advised me against a port, since I am only doing 12 treatments. However, all of the nurses recommend ports, because it makes their life easier and avoids the situation that I had. I guess since they're the ones actually administering the drugs, they have a different mindset. I am still possibly considering a port -- it will really depend on how my next treatment goes on Oct. 2.

A few more minor (but still, in my mind, significant) areas of bad news:

• Unfortunately, following my two week schedule means I will have a chemo infusion on October 30th, the day before Halloween. For most people, this wouldn't be a huge deal. For me, it is a travesty. Halloween has always been one of my favorite holidays of the year. In fact, I love it so much that I often celebrate the whole month of "Shocktober" -- that tradition actually comes from my even more freakish boyfriend Scott -- with spoooooky outings, spoooky movies, and other spooooky activities. All of this, of course, culminates on Halloween night, which just so happens to be on a Friday this year! Needless to say I am incredibly annoyed that I probably won't be feeing my best on this very special day.
• The shedding has commenced, and right according to schedule -- it usually happens 2-3 weeks after the first treatment. I've been preparing for this -- I have a wig, a ton of headscarves, and hats -- but it still is not fun. In the meantime, I'm trying to only wash my hair every other day and limit the styling, so if you see me and my hair looks a little...subpar...that is why. In my mind, the less trauma it goes through, the longer it will last! Also, I'm debating getting a Claire Underwood in the next week or so, because, let's be honest, when else in my life will have the guts to go this short? I could pull this off, right? 
  

Did you make it this far? Congrats! That's about all I have to report. I'll probably check in the next few days to update on any other chemo and Neulasta side effects. Be well, everyone!:)