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.