Chemo #9 aka 3/4 of the way done!

Happy Holidays, everyone!

In between hanging out with friends and family, stuffing my face with Christmas cookies, and watching holiday classics like Home Alone, I had my ninth chemo treatment on Tuesday, December 23rd. As you can see on the headline, the ninth treatment means that I am 75% of the way done with ABVD and only have three more treatments to go! As another great Hodge blogger (who is also a teacher) remarked, the ninth treatment is a big milestone because a 75% is finally a passing grade! Not that a C would ever be acceptable in my book (A or bust, baby!), but it's nice to know that the finish line is well within reach, and that I only have about 6 more weeks of chemotherapy before I am done with ABVD FOREVER!

But I'm not quite out of the woods yet! Unfortunately, the ole veins are not what they used to be, and after 8 treatments they're running out of steam. If you recall, last time the nurse couldn't find a suitable vein and had to call "vascular access" -- the team of medical professionals who prowl the hospital to solve vein emergencies -- to find a good juicy one which just so happened to be on the back of my hand (gross). This time around in an increasingly scarce environment, beggars couldn't be choosers, and we again had to go for the back of my other hand.

This worked for my anti-nausea drugs and the 'red devil', also known as Adriamycin (the 'A' in ABVD). However, after the push of Adriamycin, that bad boy decided to block up. Great timing, dude! Then, it was back to the warm blanket to try to get another vein to 'pop' up for a new IV. Luckily, a little engine that could sprung up on my other arm, and we were able to get another IV in. After that things went pretty smoothly, but for those who are counting, that meant I had to get an extra poke. If this happens again, I will be taking my veins' name in vain.

Other than some fatigue and some arm pain where the IVs were administered, I'm feeling pretty good and have managed to avoid the anticipatory nausea and migraines that hit me last time. It's a Christmas miracle!

In addition to my infusion, I also met with my oncologist for the first time in a few weeks. Back when I was the new kid in the chemo ward, I would meet with him before each infusion for an exam and to talk about any side effects I was having. Since the 5th treatment or so, however, our visits have been more spaced out, so it was good to see him again and catch up on the exciting adventure that is killing The Hodge.

After a brief examination where he jokingly suggested I get a tattoo over my scar above my collarbone, which, in my mind, looks like a stab wound, we spent most of the time talking about what happens after chemo.

The six-year (yes, you read that right -- six years!) plan is as follows:

• Every three months for a year I will go in for an examination and blood work. 
• Every six months for two years I will go in for a CT scan. This is slightly different from the scans I had before, which were PET/CT scans. I am a little scared to drop the PET scan, which is the one that measures the metabolic activity by "lighting up", but my oncologist says that the CT scan, which measures the lymph nodes, should be enough to show that I am in continued remission. If there is anything fishy with that scan, he will order a PET scan right away.
• After two years, I will then go to a yearly scan and examination. This will continue for four years.

As you can see, the follow-up visits get gradually less demanding as time goes on. This is because Hodgkins relapses are most likely to occur within the first two years. As time goes on, you're less and less likely to relapse, and by the five year point, you're considered "cured". If I stick to the timeline above, I'll have one more scan after my five year point and will hopefully be done with anything Hodge related FOR GOOD by the time I'm 32 years old. 33rd birthday, come to mama! (I can't believe I'm saying that...)

The one thing that may complicate this plan is geography. As long as my post-treatment scan comes back clear, I plan to move back to NYC shortly after I'm done with treatment. I'm thinking for the first year, I will fly back to MN every three months for appointments (that is, if my future insurance will permit this, which might be easier said than done). I feel very comfortable with my doctor and medical team, and I would like to keep everything as consistent as possible. However, that isn't the most sustainable plan in the long run, so if things are good a year from now and I'm still in NYC, it'll probably be time to find a new oncologist there, which could also be easier said than done, given my horrific experiences with the NYC medical world.

That's all, folks! Thanks, as always, for all your love and support.

Chemo #8: Oh hai, chemover

Remember way back in the day when I was a little cancer n00b and had this horrendous fear that chemo would be like a 6 month hangover? Luckily, my 7 seven treatments went relatively well with no nausea and pretty manageable fatigue levels. Well, dear readers, number 8 (aka 2/3 of the way done!) has been a little bit more tricky. The doctors warned me that the effects of chemo are cumulative -- meaning that they get worse with time. Well, it seems like this little lady finally had her first taste of a real session of chemotherapy. By real, of course, I mean shitty.

If you haven't seen The Room, starring, directed by, written by, created by, edited by, etc, the handsome devil above, Tommy Wiseau, drop what you're doing right now and watch it -- preferably at a midnight screening where an abundance of spoons will be thrown.

Now, before I give you all of the gory details, I want to stress that things still aren't that bad. I haven't puked or anything, and I don't think I will. But I will say that I'm feeling very much like I have one of those infamous Freshman Year Hangovers that would plague me every so often during the mid-aughts. However, way back then, all it took was a shower, some caffeine, and some greasy dorm food to cure it, meaning I was only suffering for a few hours. Oh, to be young again!

This time, I'm over 24 hours out and still feeling pretty icky.

It all started a few days before my infusion. I was reading some other hodge blogs with some really graphic descriptions of nausea. At the time I thought, "Wow, that really sucks. I feel so lucky I'm not going through it." Then I got to a passage about scents, and how certain medical scents would send them over the edge into Nausea Land. Then I started to think about certain scents in my infusion room, such as alcohol swabs and the general scent of really sterile air that doesn't get much outside circulation. Then I started just imagining the chemo drugs hanging on the IV rack and felt a wave of nausea come over me. "Oh no", I thought, "I'm having anticipatory nausea!" Anticipatory nausea can be a big problem, which is why, from the start, my doctor made sure that I had a hefty diet of anti-nausea drugs in my IV, plus three days of additional steroids, to make sure that I was well-covered on the nausea front. Up until this week, it had done the trick!

Unfortunately, this anticipatory nausea carried into actual infusion day. It didn't help that I had some vein drama (yeah, yeah, I should have gotten a port, blah blah blah!) which required a call to "Vascular Access", a team of medical staff whose job it is to go from department to department administering IVs. Pulling out the big guns! So, since my formerly "juicy" arm veins (that is actually how they've been described, no joke) now seemed to be getting shy, they had to resort to the veins on the back of my hand, which for some irrational reason really grossed me out. I think it's because I secretly worry that my hands look like Angelina Jolie's, and I don't want the chemo drugs to somehow make them even more prominent.

So, it was in this context -- the back-of-the-hand IV and my 3 days of anticipatory nausea -- that the drugs started flowin'!

Luckily, the rest of the infusion went pretty effortlessly, and I was done at around noon (though I did feel little waves of nausea, or mock-nausea). I spent a lazy afternoon napping, cuddling with the pup, and watching Gilmore Girls, and feeling really tired and borderline nauseated (again, was it just in my head?). So, I decided to take a Compazine, which is an anti-nausea pill that they prescribed (which also dubs as an anti-psychotic -- maybe they are trying to tell me something?!) that I haven't used before since I haven't had a need. It seemed to help with the nausea. In fact, I was even able to go out later that night with the Meslows for the amazingly wonderful Fezzywig's Feast and actually eat my food without feeling queasy!

Which brings us to today. Thinking about chemo makes me nauseated, but as long as I don't think about it, I seem to be okay. This makes me fairly certain that I still haven't felt real nausea (thank god!), and that I'm, indeed, suffering from a case of anticipatory nausea, which I'm hoping I can nip in the bud before chemo #9, which will represent being 3/4 of the way done with ABVD! That being said, I still feel like I got hit by a bus on the fatigue front, which usually happens to me about 5 days after an infusion. Usually, the immediate days after my infusion I feel great, thanks a large part, I think, to the steroids, so I'm hoping this isn't the new normal, as I was kind of getting used to having 13 good days and just 1 bad day.

Other than my self-induced anticipatory nausea, here are a few more updates on the borderline TMI medical front:

• The "nosebleeds" are still alive and well. I put nosebleeds in quotes because they're not straight up nosebleeds, but rather I have blood in my tissue every single time I blow my nose (which is a lot because it's winter and all -- and I have a big nose). This has been going on for about two months and is related to having low platelets and to being on blood thinners.
• Speaking of blood thinners, I admit, I'm finally (kind of) getting used to the twice a day injections. I STILL DON'T LIKE THEM, but they have somehow managed to make their way into my daily routine and become a little less painless (okay, icing pre and post injection has also helped, too, so if you ever find yourself in the unfortunate position of taking blood thinners and getting GIGANTIC bruises because of them, make sure to ice -- it makes all the difference!). A special shout out to my parents and Scott, the members of Team Jab who administer my shots because I'm still too squeamish. 
• The Neulasta spine pain has happened the past two doses. As I've mentioned in some other posts, many patients have a really hard time with this medication, as it can cause extreme bone pain. Thankfully, I haven't had any bone pain but I have had some moderate spine pain. This is kind of hard to explain, but it gets worse with sharp inhales or if I sit in certain positions. Luckily, it only lasts a day or two per cycle and is pretty manageable. Here's to hoping it stays that way because, quite frankly, I love the stuff for keeping my WBC counts up and keeping me on my chemo schedule! Maybe if my grand career plans to work on higher ed administration don't work out, I can work for Big Pharma! Neulasta, I'll be back on the job hunt after treatment, any chance you guys are hiring? 
• The hair is still looking very male pattern baldish, but thankfully it hasn't really changed much since the original awful Hair Exodus, which occurred about 2 weeks after my first infusion. So, this means that unless I am sleeping, I am wearing a wig or a hat at all times (I've stayed away from scarves unless I'm at the gym, as they just SCREAM cancer). Though I do like to sometimes dramatically fling off said wig/hat in front of my mom and sister at random times to make them laugh. It is quite a site!
• Speaking of hair, I still have my eyebrows and eyelashes, but they do seem to be thinning a bit. The main reason I think this is less that they look noticeably thinner, but they do -- at least to me -- look lighter. So, unless a steady bleaching of eyelashes and eyebrows is a side effect of chemo that I'm unaware of, I think they look lighter because I have less of them. Hold on, little guys, I just have a few short months left!
• So far, I've managed to avoid much weight gain. I fluctuate a little bit here and there, but I think that's all it is. I've read blogs of people who gain 20, 30, even 60 lbs because of treatment. Ahhh! I think it's safe to say that I'll make it through pretty much unscathed. I don't think this is because I'm lucky per say, but rather that I've been lucky to feel well enough to go to the gym. Many are not so lucky. Considering I haven't been drinking very much and exercising a few times a week (though still eating normally), if I was healthy I would be losing weight, so I imagine if I wouldn't be able to work out I would have jumped on the weight gain train as well.

That's about it! Though this post has been totally dedicated to talking about icky chemo side effects, they have still been pretty minimal in the grand scheme of things, and for the most part I've been able to go about my normal routines, such as working, hanging out with friends, and the like. I'm going to put an extra focus on NOT thinking about how gross chemo can be and psyching myself out and getting lots of sleep to try to offset the fatigue. They say these side effects are cumulative? Psh! To that I say: 

As always, thanks for your love and support! <3

At the end of the day, we're all Still Kickin

Five days ago, after his obituary was published in the Minneapolis Star Tribune, Aaron Purmort became an internet celebrity. After all, it's not everyday that "Spiderman" dies "peacefully at home on November 25 after complications from a radioactive spider bite that led to years of crime-fighting and a years long battle with a nefarious criminal named Cancer, who has plagued our society for far too long."

Yeah, that is his real obituary, which he and his wife, Nora, wrote together in the final days of his life while he was in hospice care. I know, I know, Coolest Person Ever Award, right?

Aaron Purmort, as pictured in his awesome obituary

While I didn't know Aaron (which is unfortunate, since he was a fellow Minnesotan!), I have enjoyed virtually "getting to know" him, Nora, and their cutie patootie son Ralph (who, according to Aaron's obituary, "will grow up to avenge his father's untimely death"), through Nora's blog, My Husband's Tumor, which will -- spoiler alert -- both inspire you and also make you ball your eyes out.

Many people compliment me on my positive attitude with Hodgkin's. While I definitely have good and bad days -- as you can see, I'm no stranger to complaining -- I have many more good days than bad days, and even though the neurotic in me is worried about becoming one of the 15% of people who relapse after first line chemotherapy, at the end of the day I feel pretty good about things.

But I've got nothing on Aaron and Nora! In the three years Aaron battled his brain tumor, they both lived their life as normally as possible and, above all, kept a sense of humor about things, even as it became clear that Aaron's cancer was no longer treatable. While all cancer sucks and is horrible and pretty much the worst thing ever, let's be honest: it's much easier to stay positive when you're going through a relatively treatable cancer than when you have a fucking brain tumor. The next time someone asks me "how do you stay so positive?" I will point them to Aaron and Nora Purmort, the masters of positivity.

And the next time I'm in a bad mood, whether it be from having cancer, going through a quarter life crises, or the fact that some asshole cut me off on the freeway, I'm going to think of this quote from Nora's blog, which perfectly sums up the Purmorts unique blend of positivity/humor/snark:

Go live your wild and precious life. Don’t let the bastards get you down. Don’t let idiots ruin your day. Be good to one another, even the bastards and the idiots, because we’re all just humans doing our best in this crazy little world.

While Aaron is no longer with us, his wife and son are -- in his words -- "still kickin", which means they have to deal with annoying everyday things like crawling out of medical debt after three years of cancer treatment. If you have a few bucks to spare, consider donating to the family here.

 

Cancer, a quarter life crisis, and Jen's Search for Meaning

Happy (belated) Thanksgiving, everyone!

While I have had a challenging year, to say the least, I still have a lot to be thankful for; my family, my friends, my awesome medical team and the treatment I've received thus far, having great insurance (which means I'm not getting into crazy medical debt), and, while it's been a little shaky at times, my health. Sure, I'm not to where I want to be health-wise (not even close!), but my treatment has definitely been easier than I've expected, and all signs so far point that it will (hopefully) bring me back to good health in just a few months.

So, it's in this context of acknowledging how much I have to be thankful for that I'm going to get into the meat of what I want to discuss today; even though the two are closely related, dealing with cancer has been easier than going through my latest "quarter life crisis" (I say latest because, at 26, I've already gone through my fair share already. TK REASONS WHY IT'S SO HARD TO BE A MILLENNIAL! )

It's easiest to explain this as a sort of Maslow's Hierarchy of Needs sort of situation. Even though I'm going through treatment for cancer, my basic physical and emotional needs continue to be met (hence my thankfulness). Which leaves me with the top of the period: self-actualization.

Uprooting my life by quitting my job and leaving my apartment in Brooklyn, and then moving back in with my parents in my home state of Minnesota -- aka putting my regular life on hold and giving up a lot of my independence in the process -- has definitely been harder than I thought. While I still think I made the right call in coming home for treatment, especially since I've had some "fun" little surprises along the way (*cough* PULMONARY EMBOLISM *cough*) which have landed me in the emergency room, it's been really hard to adjust to feeling so transient on both a personal and professional level.

I think most people in my situation would feel similarly frustrated. However, when you're somewhat of a control freak, the uncertainty of it all is especially maddening. On the health front, I know I can't control everything. Or, rather, anything. Thanks, Hodge, for enlightening me on that one. But when it comes to my life and where I want to go, as a rule of thumb, I don't like surprises (unless they're good surprises), I want to know with 100% certainty that the new apartment I'm moving into doesn't have bed bugs, and I like to be well-versed about restaurant menus before I even sit down in the case that the menu is really dense and I need to spend an exorbitant amount of time figuring out what I want (seriously, who can socialize and scrutinize a menu at the same time? It's a multi-tasking skill I do not possess).

Long story short, I like to live my life like fellow cancer warrior/douchebag/sociopath Walter White, minus the murders, drug empire, etc. "Never give up control. Live life on your own terms," Walter says. Oh, and one must not forget the classic "I AM THE ONE WHO KNOCKS!"

...But am I the one who knocks?

After all, Walter White's lung cancer returned. Will mine?

At the heart of it, this is really where the quarter-life crisis thing comes in: what will happen after treatment is over? Aside from being -- pardon my French -- FUCKING EXCITED to be done, the end of treatment will likely open up a whole new can of worms. While Hodgkin's is one of the most treatable cancers out there and generally responds well to the first line treatment of ABVD, there is still a chance that I could fall be one of the unlucky 15% or so who the first-line treatment does not work for, or, if it does work, only works for a limited period of time before they relapse and have to start a much more brutal salvage chemo regimen. Basically, it's about five years of living scan-to-scan before you can officially declare yourself as 'cured' (a word, even then, I don't know if I'll feel comfortable using).

Though you know what they say: You can't live your life in fear! To that I say: Easier said than done!

It'd be one thing if I was being treated where I wanted to live and work for the foreseeable future. While I like the Twin Cities and very well might want to settle down here some day, I don't think I'm ready yet. When I left New York City, things where finally on the upswing (my first two years, while great in many ways, also kind of sucked -- but that is a different story), and ideally I'd like to go back. However, it's one thing to move to a new city when you're 22, broke, and on your parents' health insurance like I did four years ago. When you do that, things just magically work out. But when you're 26 (which, let's be honest, is basically 30 which is basically 50) with a major health issue to consider and without a job and without health insurance, it's quite another story.

Too bad I already used that Liz Lemon BLERG gif, because that would be really great to put in right here.

So, there's a good reason why self-actualization is on the top of Maslow's pyramid. It's a labor of love, which oftentimes takes a lifetime to achieve (if it is even achieved at all!). While I will continue to stress and plot and strategize about the future, as that is just my M.O., every once and awhile I will remind myself that self-actualization would likely feel just as intangible if were a normal, healthy, non-Hodge-infected 26 year old.

I can't tell if that's a more glass half-full or glass half-empty way to look at things.

Chemo #6 aka HALF WAY DONE!! Oh, and another ER visit...

I am happy to report that I am officially half way done with my treatment for Hodgkin's lymphoma! This means I have completed 3 cycles (6 actual infusions), and have 3 more cycles to go. If all goes according to plan and I do not any unforeseen delays, my last chemo infusion should be on February 5, 2015. Given that I've already braved dangerously low blood counts (pre Neulasta, of course) AND a blood clot in my lung and have still managed to stay on schedule, I can't imagine what else will slow me down at this point (knock on wood).

So, between my clean PET scan and making it to the halfway point, things have been going pretty well...except for another ER visit I had last week for a fever. It started the night before, when I had a mixture of night sweats and severe chills. However, since my temperature was fairly normal when I woke up, I shrugged it off as the changing seasons and too much cocooning under my warm covers and went to work.

Big mistake.

Almost immediately, the chills came back. Normally, I am always layered up at work, whether it be with sweaters, scarves, or both, but for whatever reason that day I had zero foresight and was only wearing a thin dress (the seasons were in whack, after all!). Needless to say, it was not one of my most "productive days", and I ended up clocking out about an hour early because I could tell I was getting worse.

The first thing I did when I got home was take my temperature. Unfortunately, I have the world's most finicky thermometer, which requires at least 3 different readings, all averaged, to get an accurate result. I normally run a little on the low end -- my temperature is usually around 97 degrees or so -- so I knew I was in for a treat when the first reading was around 99. Unfortunately, it kept on climbing to eventually get into the 101.5 range.

Being the good little chemotherapy patient I am, I knew this was cause for concern. My doctors had been very clear that if my temperature is above 100.5, I would need to head over to the ER because that is often a sign of an infection, or "neutropenic fever", as oncologists call it, and with a weak immune system, a small infection can quickly escalate. Up until this point I hadn't been too concerned with this since I am on Neulasta, which means I still have a decent immune system (though I still am anal enough that I check my temperature every night before bed. Like I said, I'm a good little chemotherapy patient!).

By this point, the sweats replaced the chills, which, in my opinion, are even worse. So, with a heavy heart I conceded that there maybe was something wrong and I might as well face the music. And with that, my mom, dad, and I headed out to ER 2.0. After all, there's nothing better than a weekly family bonding session in the ER!

By about 9 pm -- after an examination, chest x-ray, complete blood count, urinalysis, a bacterial culture on my blood, and EKG (I wasn't sure if my "chest pains" were an infection or anxiety -- turns out they were the Big A) -- we still didn't really know what was going on. Then, things got even more interesting when the ER doctor came in all flustered and informed us that my WBC was through the roof -- 21,000 to be exact (normal ranges are between 4,500 and 10,000) -- and that I either had some crazy infection looming beneath the surface or my counts were elevated as a side effect of Neulasta. Since he does not specialize in cancer treatment, he didn't feel comfortable making the call, which meant he had to connect with the oncologist on call at the U of MN for the final verdict.

Close to two hours later -- around 11 pm or so -- we finally got it: DISCHARGED. He still seemed a little skeptical about discharging me -- "You know, if you'd feel more comfortable we can totally admit you as a precaution." Part of the reason he said this is because the results of the bacterial cultures of my blood could take up to 48 hours,  so if we wanted to be on the extra safe side I could start some IV antibiotics. What I also I think was going on, though, was that he was still trying to work his brain around the Neulasta. This is not to say that he was not an incredibly competent doctor, but it just goes to show that DOCTORS ARE PEOPLE TOO and each have their own area of specialization. By nature of working in an ER, this doctor generally sees patients with severe external injuries or other more routine conditions (pretty much anything is more routine than Hodgkins, in which the average person only has a 0.2 percent chance of developing in his or her lifetime). It seemed to go against all of his instincts to discharge me with such a funky blood count, but luckily he did, since it is one of my goals to NEVER spend a night in the hospital.

Go figure, by the time I got home I was feeling much better, and I even had a sweat-free night!

All of my tests came back normal -- even the bacterial blood culture -- so I guess we'll never know what caused this random spike in my temperature. As with the phantom blood clot that refuses to be detected, my body operates in mysterious ways. While I am always of the camp "it's better to be safe than sorry", I am getting very sick of ER visits, so I'm hoping things calm down a bit. I know I said that last time, but this time I really mean it!

A few other updates:

• I had my second pulmonary function test to make sure that the bleomycin (the 'B' in ABVD) + Nuleusta wasn't causing too much havoc on my lungs. If you remember, I really didn't like this test. I am happy to report that the second time went much smoother. The doctor I had was much clearer with the expectations of each test, so instead of doing 20 different tries to get an accurate result, it only took about 2-3 tries. Naturally, I thought this meant that my lungs were even better -- hey, I had been working out! -- however, that was not the case. While they're still within the normal range, they aren't as strong as they were before chemo. Whether or not this is permanent is still TBD, but at this point we will still be chugging along full speed, Bleomycin and all (some people drop the Bleomycin if they have more significant lung damage, which apparently doesn't really impact the efficacy of their treatment. Hmmm).
• I finally got the dreaded Nuleusta bone pain everyone talks about, which happened to coincide with my fever, making it extra pleasant. Many people get the most pain in their hips -- I had a little bit there -- but mine was mainly in my spine. SPINE PAIN! Weird, huh? I can't really explain it except that my spine REALLY hurt, especially with any movement. Luckily, this only lasted about a day. Apparently, taking a Claritin before administering the injection can help with this. Unfortunately I forgot about this little detail before yesterday's injection, so I'm hoping last time was just a fluke and that I'll make it through this cycle free of spine pain.
• Speaking of injections, have I mentioned that I really hate this twice a day Lovenox routine? Just as I felt like I was finally getting used to it (still not administering myself, but not totally freaking out when either my mom, dad, or Scott jabbed it into my stomach) I discovered a new surprise. LUMPS under the injection site. Once you're diagnosed with cancer ANY sort of lump will immediately spike your blood pressure, so I called my care team right away. They said this is nothing to worry about and that it can happen with injections. Apparently, these lumps (I have four so far), are just a collection of scar tissue that will go away in a few months. Needless to say I am rapidly running out of stomach space to inject these assholes. Still, I guess it's worth it not to get another blood clot. But just barely.

So there you have it. I'm getting close to the finish line, but I still have a ways to go. As always, thank you for all your love and support!

Yay PET scan! Boo Lovenox!

Between last week's PET/CT scan, the pulmonary embolism, and my new twice a day jab of Lovenox, it had been quite the week. Thankfully, things seem to be slowing down a bit, and aside from some very grotesque bruising on my stomach where the Lovenox blood thinning shots are administered, I'm feeling pretty good.

As I mentioned earlier, I had a follow up appointment with my oncologist, Dr. Peterson, to go over my PET/CT scan in more detail, as well as to talk more about the implications of my blood clot. The good news is that my PET scan came back negative, which means there are no detectable cancer cells in my body! This does not necessarily mean I'm cancer free (yet). There still could be some stragglers hodging about that are too small to be detected, but this is a really good sign and was just the result that my doctors were hoping for. This does not change my treatment plan -- I still have 7 more chemo trips to go -- but this does give a good indication that I should hopefully make a full recovery after this "wonderful" journey of ABVD.

If the PET scan is the barometer to measure the actual cancer, the CT part of the scan examines the tissues and other structures of the body. This is the part of the scan that I wasn't 100% perfect on, but that's okay because it has less to do with my overall prognosis and likelihood of a full recovery. The CT scan showed significant reduction of the tumors and inflammation, but, unfortunately, they're still enlarged from what is normal. Dr. Peterson said that these could take awhile to go all the way down -- or they might never return to their normal size, which is still okay, but it just means it might be harder to monitor in the future if there is any sort of hodgy changes. While I'd like to have had a perfect scan around the board, I am very satisfied and excited about my negative PET scan! Hopefully there will be many more of those to come in the future!

Me, after receiving the news of my negative PET scan!

So, now for the less fun part: the pulmonary embolism caused by a blood clot. Since I had no symptoms and it was only detected from the scan, they called this an "incidental finding". After an ultrasound of my legs -- as this was most likely source of the clot -- came back without detecting a noticeable clot, everyone's just kind of shrugged their shoulders about this phantom clot. Maybe it's in my arms? A smaller vein in my leg the ultrasound may have missed? Either way, my doctors do not see this being a long term issue -- it will probably clear on its own in a few months. However, they do want to be proactive to make sure I don't develop another one. This is where the Lovenox comes in. Every day, twelve hours spaced apart, I need to shoot up with this crap. Thankfully, this whole cancer process has taught me to suck it up in a lot of ways -- I am not really bothered getting pricked and jabbed by medical professionals and will pretty much hand over my body to anyone with scrubs in the name of Fighting Cancer.

However, I do have a problem when it comes to pricking/jabbing myself. Luckily, my mom has been administering these for me the past few days, but I do know that I have to start taking over soon if I want to have any semblance of a social life -- ahh, the days before Lovenox where I could just make plans after work! 

If it was just a question of jabbing them into my stomach, maybe I could do them and not get totally grossed out. The problem is these little assholes leave MASSIVE bruises (do not click that link if you're squeamish) and you're really only supposed to shoot up in the lower stomach underneath the bellybutton, as that's where the best 'fat' is. Apparently, if you inject them in the fat and not the muscle, you shouldn't have any bruising. WRONG! I by no means have a six pack -- which means that this medicine should go in nicely, painlessly, and without bruising -- but after 5 days I am unhappy to report that is not the case. I'm reading up on some other tips to minimize the bruising, such as icing before and after, and applying more pressure to the spot of injection, but so far nothing has worked.

So, hands down this has been the worst side effect of chemo. I'm almost half way done with treatment, and up until this point, I really didn't feel that much different. Sure, I would get a little bit more tired than usual and would have a few days where I felt pretty crappy, but my day to day life wasn't drastically impacted. There's something about an injection happening twice a day that is really draining. At least with the bi-weekly Neulasta shot, which stimulates the bone marrow to grow more white blood cells, I knew that once it was done with, I had another two weeks before I even had to think of it again. With the Lovenox, it feels like I'm never really done. T-minus 8 hours! 4 hours! 2 hours! Sigh! It already feels like a never-ending cycle and it hasn't even been a week.

So, while I have to be on this for six months, the good news is that I only have to do the shots throughout the duration of chemo (another 3 months or so). Then I can start taking pills instead. The reason they do it this way is because the pills take a few days to enter your system -- and likewise take a few days to exit -- so if, say, I had to have an emergency surgery for something hodge-related, having really thin blood would complicate things. I'm going to give myself another week to see if my body starts having a better reaction to these things. If not, I may try to push for the pills instead, as I don't really see why I would have any emergency surgeries in the near future, especially following my negative PET scan.

Here are a few other updates:

• Chemo: After meeting with Dr. Peterson last Thursday, October 30, I had chemo #5. Minus a little vein bruising afterwards -- due to my nemesis Lovenox -- it went very well. The next time I'm in the infusion chair on Nov. 13th will be for chemo #6, which will represent my half way point! 
• Lung issues: While this seems kind of counter-intuitive, my blood clot in my lung is unrelated to any sort of chemo-induced lung damage that may come with the Bleomycin or Neulasta. If you remember to the early days of this whole saga, I had to take a pulmonary function test to make sure my lungs were strong enough to withstand 12 rounds of Bleomycin (the 'B' in ABVD) and Neulasta, both of which can cause some nasty lung damage if your lungs aren't in good shape to begin with. So far, I don't notice any lung damage -- I get a little more winded power-walking up hill than I used to, but after mentioning this to my doctor, he assumes it is just because my body is weaker in general. Still, I have another pulmonary function test to look forward to on Nov. 12 just to make sure things are still going smoothly. 
• Veins: So far, so good on the vein front! Following chemo #5 I have not had any vein pain or issues. The very irritated vein I got after chemo #2 is still pretty bruised, which I was told may take months to go down, but thankfully the rest of my veins seem to be holding out. Since I'm almost halfway done with treatment, I think I've officially stopped my on-and-off again flirtation with the port.
• Vain things: 
• Hair: Believe it or not, I need a haircut! Before you get too excited, this does not mean I suddenly have a ton of hair to work with -- I wish -- but it seems that I've plateaued in the hair loss department (at least for now). Unfortunately, though, most of the loss has occurred on the top of my head, so I'm still confined to my wigs and hats for the time being, but the hair around my crown is still growing, so I guess that's good news, right? What I'm even more excited to report is that I still have eyebrows and eyelashes. The optimist in me is thinking, hey, I've made it this far. If they're going to fall out, they would have fallen out! But again, ABVD effects people differently, so I guess I should be open to the possibility that one day I will wake up looking a little freaky. 
• Weight: Ah, every woman's favorite topic! Many people envision the average cancer patient as emaciated -- or at least much thinner than before he or she got sick. Well, that is simply not true, and it really depends on a variety of factors -- most especially, what type of cancer you're being treated for and what combination of chemo drugs. Most people who go through ABVD for Hodgkin's -- at least that I have come across in the blogging/message board universe -- seem to gain weight from the chemo. The reason for this seems to be due to fatigue (ie. the body isn't moving as much because it's tired), steroids (hello, water retention!)  and a less healthy diet (hey, if you're not feeling that great, you're going to go for the comforting mac and cheese, rather than some lean protein and veggies. Doctors even tell you this is okay!). Thankfully, I have stayed about the same weight these last few months, most likely to continuing to eat a healthy diet and trying to get as much exercise as possible, which has mainly been power walking and yoga. Now that it's getting colder and the days are getting shorter, I am really going to force myself to keep trying to stay active. Not only is this good for my body, it really makes me feel better mentally as well. Unless I'm watching something really good on Netflix, I am not a very good couch potato. 
• Fashion: What does fashion have to do with cancer? Aside from headwear, not much. Oh yeah, that is if you are lucky enough to escape the horrors of Lovenox, which I've so kindly and meticulously detailed for you above. Since my lower stomach is completely bruised, I have unfortunately had to institute a moratorium on pants or jeans of any kind, unless they're super low rise. Oh wait, that was (unfortunately) a thing in my preteen days and shall never came back as long as I have dignity and an understanding as to how to dress my body. So, for the near future, it's all about the dresses, leggings and tights, Jessica Day-style:

• 

  After all, who has time to wear pants when you're so busy being quirky, adorkable, and fighting cancer?

That's about it, folks! Thanks for all your support and positive energy -- it is always appreciated, and it was even more so this last week! Here's to hoping that this week is less crazy than the last one!

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!