FDR and the art of mind over matter

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

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

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

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

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

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

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

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

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

(Swoon).

Chemo # 2: A bit of a roller coaster

Howdy, ya'll!

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

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

Awesome Team Jen stickers

Flashy Team Jen buttons

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

On the cultural imperialism of New York City

Greetings, everyone!

I hope you all had a fantastic weekend. Mine was a lot of fun --  I had some family in town, so there was a lot of eating, chatting, and general merriment. What was not fun was my Saturday morning. I mentioned in an earlier post that I have not been sleeping very well due to lower back pain at night (though I'm fine once I get up, go figure). I've noticed that other times when I've come home to visit this happens, so I am fairly confident it is related to my mattress, as I did not have any issues back in NYC.

Anyway, it has made for some atrocious nights' sleep. And if there is one thing you should know about me, I become a monster when I have not had proper sleep (at least 7 -- preferably 8 -- hours). I can usually get by on a few days of skimping, but anything more than that and I am one unhappy camper. So, on Saturday morning, after about a week of waking up in pain on the hour, every hour, I finally gave up on "catching up on sleep" and got out of bed at 6 am feeling like this:

In my insomniac haze, I thought, If I had stayed in NYC, I wouldn't be going through this. In fact, despite the obnoxiously loud garbage trucks, dramatic fights on the street, and ambulance sirens, I'd likely be sleeping a-okay on my cruddy little Ikea bed. I'd wake up feeling refreshed, revived, and ready to take on the day. But it wasn't just a good night's sleep that I missed. Suddenly, I realized just how much I missed New York City as a whole.

Now, I have felt, at best, cautiously positive about New York City in the two years I lived there. I like NYC, but I will never love it, I commonly told people. More accurately, I have a like-hate relationship with the city, mostly because there are so many uniquely New York things that just drive me crazy. But now that I'm not there, I couldn't help but wonder (cue Carrie Bradshaw voice): Maybe we need to be uncomfortable -- or at least outside our comfort zone -- to truly be comfortable.

It makes sense! My time in New York City has, for the most part, been a struggle. From being broke all the time to battling flying cockroaches to having to drag a month's worth of laundry to the laundromat to hour-long phone battles with Time Warner Cable over mystery charges to waiting in line for 30 minutes to pay for groceries at PathMark to holding my breath walking through Chinatown to avoid gagging from the garbage, life has not exactly been easy for me these last few years. These examples -- as well as my awful experience navigating the NYC medical landscape, where I dealt with incompetent doctors (at worst) and indifferent doctors (at best), are why I decided to move back to Minnesota for treatment.

And from a strictly medical standpoint, I am confident that was the right decision. My treatment, so far, has been excellent, and my medical team is compassionate and knowledgeable. There is definitely something to be said for wanting to be around "Minnesota Nice" when you have cancer.

But when it comes to my personal life, my career, and my interests, the verdict is still out. I miss Fort Greene. I miss the people I've grown close to the last few years. I miss our patio overlooking Spike Lee's studio.  I miss my favorite bars. I miss aimless walks where I would creep into the windows of million dollar brownstones and evaluate their interior design. I miss New York City tap water. I miss day trips to different neighborhoods. I miss biking through a maze of pedestrians and cabs. Above all, though, I miss the constant stimulation -- both good and bad -- of New York City.

All of this is made even more bittersweet by the fact that it is impossible to escape NYC -- even when I'm 1,000 miles away. This is because almost ALL of the popular culture I consume is based in New York City. There are my staples, such as 30 Rock and Sex and the City, which I enjoy watching when I am feeling lazy, need a laugh, or just have some time to kill. Then there is Girls, which I have been catching up on, even though I oftentimes get so frustrated with it that I have to turn it off (please tell me that the rumors were true and Jessa leaves the show...). Then there is Louie, which I have just started and love, though it makes me depressed every time he is doing standup at the Comedy Cellar because it reminds me of that time Scott and I saw Aziz Ansari performing a secret show shortly before my diagnosis. Oh, and I can't forget The Mindy Project, which I started re-watching with my mom and sister (curiously, my dad goes downstairs to his "man cave" whenever he hears Mindy Kaling's voice). Even a random crime novel I uncharacteristically picked up at the Eagan Public Library called Invisible City features a ton of my old Brooklyn and New York stomping grounds, including awesome passages describing the specific scent of New York City bodega coffee. I have also been debating re-watching Bored to Death for the third time, but I think I'll hold off because you can literally see my apartment in some of the shots where Jonathan, George, and Ray are prowling the streets of Brooklyn.

Now, you're probably thinking, why don't I just start seeking out non NYC-based television, movies, and books? Well, easier said than done! I tried watching Friday Night Lights, because it's supposed to be, like, sooooo great (and I've had a crush on Kyle Chandler since his Early Edition days), but I really couldn't get into it (football, God, blah blah blah), although it was fun to hear Scott say "Tim 'Big Rig' Riggins" on repeat like a broken record. Oh, and I am watching one non-NYC show, Veep, but that opens up a whole new can of worms (I lived in DC for two years before NYC, and easily get nostalgic for that, too).

So what's a girl to do when she's nostalgic for a place that literally dominates the cultural landscape -- at least the cultural landscape that a young, liberal artsy, politically liberal gal enjoys? Well, I can either start watching network dramas that appeal to a more "broader" (code, non-coastal) American audience, or I can start watching the Mary Tyler Moore Show to get me psyched up about Minnesota. Given some of the atrocious previews of new fall shows, I think I'll go with the latter.

So, that was my I miss NYC meltdown in a nutshell. Two days -- and a lot more sleep -- later (thank the lord for heating pads), I am happy to report that I'm feeling slightly better about things. I think what's really been hard these last few weeks is that I actually don't feel that bad. My first round of chemo was relatively painless and had very few side effects. It's been almost two weeks and I feel totally normal, which makes it feel so weird to be living with my parents and not be working. I had this feeling in my mind that I would turn into some sort of invalid who would need her mommy and daddy to wait on her (I even joked about getting a bell I could ding every time I needed something). Had I known that I would feel normal, I am not sure that I would have decided to uproot my whole life to come to Minnesota for treatment. Of course, ABVD chemo is cumulative, so it will likely get harder and harder on my body as treatment goes on, but right now I can't shut off the part of my brain that keeps telling myself You would have been fine in NYC. Alas! The grass is always greener....

So, in the meantime, I'm going to keep telling myself this:

So I don't turn into this:

One week later, and still not dying

Hello everyone!

So, it's been exactly a week since my first ABVD treatment, and I'm happy to report that I'm still alive and kickin'. I mentioned in my earlier post that I was drugged up with a LOT of anti-nausea pills, so that is probably why I've been doing so well. I am not sure what the standard protocol is for prescription recommendations -- I imagine it varies somewhat doctor to doctor -- but my team at the U of M's Masonic clinic seems to have everything down to a science. Phew!

While I have had minimal nausea, I have had a few other side effects, including:

• Fatigue: This so far has been minimal, but I did notice around day 4 and day 5 that I felt much more run down than usual. Of course, this is probably because I haven't been sleeping as well --  however, I suspect this is due to lower back issues, rather than chemo. Here's some context: I sleep on a plush, pillowtop bed that feels like heaven the first hour or so. After that, though, all hell breaks lose -- at least for me. I wake up in the middle of the night, sunken in the bed, with atrocious lower back pain. Pillows between the legs, different positions -- none of this prevents the inevitable. 

The reason for this is over the past few years, I have grown accustomed to my very firm NYC Ikea bed -- probably not the best quality, but my back got used to it and I had two years of GREAT sleep. Now, everything I come home, whether it be for vacations or holidays, I have issues adjusting to this bed. I would have hoped that after close to a month, my body would adjust, but that's not the case. Alas! I am resorting to sleeping with CVS heating pads wrapped around my back. If I didn't already have the sleeping habits of a 70 year old woman (Vics Vapor Rub, eye covering, ear plugs), I'd start to worry. However, there are worse things in life than being reliant on a heating pad.

• Tingly fingers: Also around day 4 or 5, I noticed that the sensations in my finger tips were a little off. They are not exactly numb, but they are chronically in that borderline tingly state, which is pretty annoying. I didn't remember my medical team mentioning anything about this, so of course I hop on to Dr. Google and find that many other people going through ABVD have also experienced this, and it is likely due to the increase in Uric Acid given off by the dying cancer cells. Ahhh, so that's why I was given a prescription for Allopurinol! Apparently this is supposed to limit this side effect, so maybe I need a higher dosage? It's really not that big of a deal as far as side effects go -- it's more annoying than anything else -- but then again, if modern medicine has deemed it possible for me to have full sensation in my finger tips, that's probably something I should pursue, right?

• Godzilla Mode: My amazingly creative friend Jenna coined a marvelous term in college: Godzilla Mode. This term can be used to explain a state where your body doesn't feel quite right with the world -- usually after a night of drinking. You might be clumsy, have a cloudy/achy brain, and snap at other creatures who get in your way. Whether this is a side effect of the chemo, my lack of quality sleep, or somewhat lack of intellectual stimulation --I'm not currently working, which is starting to drive me crazy -- I hope that Godzilla Mode is only temporary, because after 6 months of this I won't be responsible for any crazy actions, including knocking over buildings, breaking the ice maker (already done that), or flooding the kitchen with said broken ice maker (again, already done it).

Other things of interest:

• Diet: So far, I've been eating my standard diet of mostly protein + fat + fruits/veggies, with the occasional indulgence in some sort sort of carby snack. There has also been a lot of Chipotle in my life, which I'm not complaining about since my usual (veggie fajita bowl) is only $6.50 here, compared to $9.00 in NYC. A lot of the cancer literature recommends somewhat tempering your diet and avoiding lots of fats/proteins in favor of carbs, like pastas and rice, which are in theory easier for your stomach to digest. Since I had minimal nausea to begin with, I didn't think that was necessary, especially since we all know how bad a low fat, high carb diet is for you. The one thing I might have to watch out for is how much fresh produce I'm consuming. When my immune system really starts to turn to shit, it might be a good idea to lay off raw stuff for awhile, since my body will be especially prone to infection and food-borne illnesses. There are worse things in life than steamed veggies! 
• Alcohol: Aside from one of my beloved Spotted Cows a few days ago in honor of my college friend Cassandra visiting, I have been holding off on any alcohol. Again, this is not because I feel nauseated, but rather I'm worried that alcohol could trigger nausea. The beer I had a few days ago tasted fine and didn't cause anything major in my insides, so I might treat myself this weekend to a drink or two. My medical team says a drink here and there is totally fine -- and for some patients who lose their appetites it's actually encouraged. After all, who doesn't want some sort of snack after drinking a beer? 
• Exercise: Luckily, I've also been able to stay fairly active this last week. While I haven't gone to any intense exercise classes, I have been walking, biking, and doing pilates. Dr. Peterson said there really isn't a limit on exercise, and to just do what I feel comfortable with, so I might live dangerously and try a zumba class this weekend.
• Hair: I've still got it! Dr. Peterson says it usually falls out 2-3 weeks after the first treatment, so I guess I'm not in the clear yet, but it feels thicker than ever with my new shorter 'do, and I'm hoping I am one of those lucky 1% that might come out of this thing with something that resembles a full head of hair.

My next chemo appointment is on Thursday, September 18th. After that I will be 1/6 of the way done. Part of me thinks that sounds like a huge accomplishment, then the other part of me realizes that I will still have 10 more treatments to go. I was half joking with my mom that I wish I could just be in a medically-induced coma for 6 months as my body fights of The Hodge just because I'm already sick of dealing with it and putting my life on hold. Zen, please come to me, because I am way too impatient to wait for you.

Chemo #1: 1 down, 11 to go....

Hi everyone,

It's been about 24 hours since my first round of ABVD, and so far I'm feeling great (great, as in normal)! Part of this is likely due to all of the anti-nausea and steroids they pumped my body with, as well as the anti-nausea pills I've been preemptively taking. I'd like to think the other part is that my body handles ABVD really well, but that might be too soon to say. Some people feel the side effects -- which mainly include nausea and extreme fatigue -- right after the infusion, and others take up to 3-5 days to feel it. So, I'm not in the home stretch yet, but I'm holding out hope that I'll be one of the lucky ones with few to no side effects!

Without further adieu, here is a recap of my first chemo journey:

My mom, Becky, and my boyfriend, Scott, accompanied me as my cute little cheerleaders and were both awesome. We arrived at the U of M Masonic Clinic for my 12:30 pm appointment with my oncologist, Dr. Peterson. This was really just a chance for us to ask any other questions before chemo started. He also went over the results of all my blood work, which was pretty typical. The one interesting finding was that I did test positive for having the Epstein–Barr virus in my system (this is the virus that causes mono), though I never had any symptoms of having mono that I or my family can remember. Doctors and scientists think there is a correlation between that and Hodgkin's Lymphoma, though it is hard to say one way or another, as 90% of the human population is infected with the Epstein–Barr virus, and very few end up contracting Hodgkin's. Lucky me, I guess!

After my appointment with Dr. Peterson, I also got weighed and had to get a blood count. This will happen before each appointment. The amount of medicine you are given is directly related to your weight. Some of the medicines, such as Adriamycin, have lifetime maximum dosages you can have, so they want to make sure they don't overdue it, not even by a little. They also do a blood count before each treatment to make sure that you're healthy enough to go in for more chemo (aka poison). The main thing they look for is your white blood cell count (WBC). If it's too low, they may have to delay your chemotherapy treatment by a few days to give your bone marrow a chance to build up more white blood cells (the lower your count, the more susceptible you are to outside infections). However, ABVD is most effective when given on a very strict schedule, so any sort of delays are not a good thing.

After that, it was time to get poisoned. We went up a few floors to the outpatient infusion room, which was actually pretty nice (or as nice as that kind of room can be). There isn't much privacy -- each infusion room is separated by a curtain -- but luckily it was relatively quiet, so it didn't seem like we were right on top of each other. I also got a corner spot, so I had windows on both sides. In case you didn't know it already, I am huge sucker for natural light, so that lifted my spirits. After we were all settled, we met my chemo nurse, Ginger, who was great. I told her that I was keeping a blog and I wanted to take detailed notes, and she was a champ about that, even spelling all of the crazy medicines for me!

Now it was time to get to business. As I mentioned earlier, I opted against getting a port. The last few days leading up to my first chemo appointment I started to regret my decision, because it does seem that most people on the internet do end up getting them, and are grateful for them. While it requirers surgery to insert it, then stays in your chest for 6 months, and then requires another surgery to remove it, people like it because it speeds up the chemo process and you don't have to get your veins pricked every time. Also, the chemo drugs can also leak from veins into your tissues and cause complications, but this is rare. Lastly, they can make your veins permanently "hard". Moral of the story: gross.

Going into my initial meeting with my doctor on 8/22, I was feeling pretty 50/50 about the whole port situation. My doctor recommended against it, since I will only be having chemo twice a month, and he also mentioned that ports can become infected and can also increase your chances of blood clots. Though he did say that any time in the process I wanted to get one, he'd be more than happy to help.

Well, needless to say if all of my infusions go as smoothly as my first one, I'll be very happy I opted against getting a port. I believe I mentioned (or, rather, bragged) in an earlier post, medical practitioners are always drooling over my veins. Anytime I have to give blood or get shots, there is never a problem. Thankfully, this was also the case with chemo #1. I had read some horror stories of it taking multiple pricks -- and multiple nurses -- so I felt very thankful that the whole thing was done in seconds. However, after the fact, Ginger did confess that was a little nervous since apparently I already have kind of "hard" veins, which could have made the whole process more tricky. Hopefully those "hard" veins don't come back to bite me in the ass next time...

Sorry if you're squeamish, but this was the IV point in all its glory. Ginger was so great at inserting it, she didn't even leave a bruise!

Now, on to the juicy stuff: the drugs! It started with some saline (aka saltwater) to "prep" my veins for the medicine. This was also used throughout the treatment as a sort of "palette cleanser" in between drugs and also helps with keeping your body hydrated. The next medication was Aloxi, which is used to prevent chemotherapy-induced nausea and vomiting. This was given in my IV via the "push" method, where the nurse slowly pushes it in with a syringe. This lasted a total of 30 seconds. Then, there was some more saline and then another anti-nausea drug called Emend. This was given via the drip method and took about 20 minutes. Both of these drugs stay in your system for 2-3 days, which is likely why I'm still feeling pretty a-okay. Lastly, I was given Dexamethasone, which is a steroid that also helps with combatting nausea (but can also cause weight gain and insomnia -- goody!). This was given via the drip for 12 minutes.

After this is where the real fun began. ABVD time, baby! ABVD is a cocktail of drugs which all work together to fight The Hodge. Before each drug, Nurse Ginger called over one of her colleagues and read the medicine amount and my patient information just to double check I was getting the correct dosage. As I mentioned above, you are given a specific amount directly correlating to your weight, so precision is key. Here is the order I was drugged up on:

1. Adriamycin: This was given via push and took about 10 minutes to go in. Oh, and it was also BRIGHT red -- we're talking Hawaiian Punch style red. Kind of eerie. This is one of the drugs they have to be particularly careful they give you the exact amount on, since there is a lifetime amount that you can get and it can also cause heart damage, even with safe doses. This is why I had to get the cardiac echogram last week to make sure my heart could handle it.
2. I know what you're thinking, following the acronym, it should be the B drug, right (which, by the way, is called Bleomycin)? Wrong! The next one I was given is called Vinblastine. This was also given via a push. This was just a few minutes or so -- nothing significant to report back on that one.
3. Now, it was time for Bleomycin. This particular drug is the most likely one to cause an allergic reaction (though still, this is rare). So, I was given an itsy-bitsy dose via the drip IV, and then had some steroids and Benadryl on hand in case there was any funny business. Usually this so-called funny business, in the form of an allergic reaction, happens in the first few minutes, but they want to make sure they're extra careful, so we waited a full HOUR to make sure there was no reaction. I'm happy to report that my body was totally fine with the Bleomycin. One hour later, I was given the rest of the Bleomycin via the drip, which took another half hour or so.
4. Last, but not least, it was Dacarbazine time! This was given as a drip for one hour. With ports, this only takes a half hour, but it can make your veins sting badly if it's given too quickly, so they slow it down for those of us without ports. I was also given a heated blanket for extra comfort. I felt zero discomfort, and I was totally okay with putting in the extra half hour to make it pain-free.

After the infusions, the pharmacist came by with some more oral medications to help with the nausea, etc. Here's what he gave me (FYI the first 2 are mandatory; the second 2 can be taken as needed):

1. Allopurinol: This is a medication that I will take once per day for 10 days, likely only for this cycle. This prevents a buildup of uric acid, which can cause gout or kidney stones. This is given because dying cancer cells give off a lot of uric acid, so combatting this is very important.
2. My good friend, Dexamethasone, the steroid I was given via IV, but this time in pill form! Again, this is used for anti-nausea purposes, but unfortunately has the side effect of weight gain and insomnia. I slept fine last night, but that was likely due to another one of the "goodies" I was given (more on that later). I will take this on Day 2 (day after chemo), Day 3, and Day 4.
3. Next is the Compazine, which is another anti-nausea medication. Interestingly, this was on the market for about 40 years as an anti-psychotic drug, but they realized it did more to treat nausea than anything. Good to know if I'm feeling any psychosis coming on I have this bad boy to also turn to!
4. Lastly, I was given Avitan. This is another anti-nausea drug which has the extra bonus of making you sleepy! The pharmacist advised that this might be good to take to counter-balance the steroid Dexamethasone, which can cause alertness and insomnia. I took one pill last night around 9 pm, and was out at 9:30. Then I woke up wide awake at 4 am, popped another (you can take them every four hours), and then slept soundly until 8 am. How glorious...until I did more research and found these are highly addictive. So, until severe nausea starts up, I might stick to good ole fashioned Benadryl as my sleep aid while I have steroids in my system.

All in all, it took about 4 hours total for the first infusion. Moving forward, it be closer to 3 hours, since we won't have to do the allergy test for the Bleomycin. And while 4 hours seems like a long time to have drugs being pumped into your arm, the time went by surprisingly quickly -- a big part, I'm sure, due to my dazzling company. My mom and I watched a few Gilmore Girls episodes, while Scott solved "puzzles" on his gameboy and intermittently piped up something snarky about the episode (why he does not like a show that's all about coffee, witty banter, and pop culture references -- not to mention a ton of Twin Peaks guest stars -- is beyond me). The icing on the cake was some delicious homemade chicken parmesan courtesy of Jenny Meslow! I really couldn't have asked for the day to go any smoother.

Thank you again for all your kind thoughts and positive vibes. I'm not out of the clear yet as far as the nausea is concerned, but I'm still feeling good and am hoping this lasts as long as it can!

I have the best support team ever

T-minus one day until chemo!

Before I'm all drugged up, I wanted to say a HUGE thank you to everyone who has reached out and given me their support these last few weeks. Seriously, you guys are all incredible and I am so grateful. I want to especially thank my parents, for feeding me and putting a roof over my head and being so supportive, as well as the Meslows (my boyfriend Scott and his parents, Doug and Jenny). The Meslows -- and their connections and tenacity -- are the reason I was able to get an appointment with Dr. Peterson, who is one of the best Lymphoma doctors around, as well as navigate my treatment plan so seamlessly at the U of M. I wish I could everyone individually here, but there are SO MANY of you that would take forever. You guys are all the best.

I also want to bring to your attention some great fundraisers that my friends and colleagues have put together to raise money for the Lymphoma Research Foundation, which provides funding for innovative lymphoma research. As I mentioned in an earlier post, while doctors have figured out effective ways to fight -- and for many people cure -- Hodgkins, little is known about its cause. Doctors and scientists suspect it is a combination between genetics and environmental and viral exposure (specifically, an abnormal response to the Epstein-Barr virus), but the medical community is still largely in the dark about why some people develop it and others don't, which is why research funding is so important. My fabulous DC crew -- Anna, Abram, Matt, Heather, Rachel, and Sophie -- will be participating in the Prevent Cancer 5k run on September 21st in Washington, D.C. You can donate to their team here. My glorious NYC friends and colleagues from Roosevelt House will be participating in an indoor cycling session on September 14th; you can donate to their team here.

Image courtesy of the Anna, graphic designer extraordinaire, who should drop out of law school and become a marketing exec.

 

Other updates: To prepare for my pretty much inevitable hair loss, I chopped quite a bit of my hair off so it wouldn't be as drastic when it starts to come out. Apparently I was just a inch or so away from being able to donate to locks of love. Too bad -- it'd be cool to have had a wig with my own hair! Here's a little before and after (#SeLfYnAtIoN):

The second picture is after some heavy straightening. I don't have super thick hair, but it's thicker than what's "fashionable" for short 'dos and requires a lot of styling to make it not look like I am an 80s prom queen. I even debated going back to the salon to see if they could add some layers to thin it out, but realized that thinning out my hair is the last thing I want to be doing before starting chemo.

While I plan to hold on to my hair till the last second -- if it gets super stringy, I have a few hats I can use to cover up my scalp -- I picked out a wig and a few head scarves. The wig looks a little "wiggy", but the color and style are great, and I think if it partner the wig with a headband it might almost pass as my real hair. The best part? All of this was totally free, courtesy of the American Cancer Society! There's another organization you might want to donate to if you have some extra dollaz hanging around.

Other than that, I've been trying to relax and get used to not always having something to "do". I am trying to stay busy by seeing friends and going to the gym and running errands (I basically have the lifestyle of a suburban soccer mom), but it's been hard to adjust to not having a set schedule and work projects that I need to complete. Hopefully that will change in the next few weeks -- I'd like to get some sort of part-time job and do some freelance writing. I've been putting these off the last few weeks because of the the elephant in the room, the chemo. I want to see how I react to it and then judge what is realistic. Some people continue to work (though they scale it back a bit), whereas other people people stop working completely. I have the luxury where I could theoretically do both, though that depends how I respond to treatment.

That's about it! Thank you again for your love and support -- I'll make sure to update in the next few days how my first chemo went.

Chemo: is that code for a 6 month hangover?

Hello everyone!

I hope you all had a fantastic Labor Day weekend! Mine was excellent -- a beautiful wedding in Wisconsin where I got to catch up with a bunch of good friends, as well as my SECOND outing to the fantastic Minnesota State Fair (this time with longtime fair veterans, the Meslows!) I couldn't have asked for a more perfect "last weekend" before I start chemotherapy on September 4th.

Speaking of this weekend, while it was fun, certain events -- okay, one particular event, a night of moderate 'binge' drinking, sparked an intense fear that shook my very core: what if chemotherapy is really just a six month hangover?!

Full disclosure: I am long passed my college days where I tended to overdue it every once and awhile (hey, I did go to college in Madison, WI). Now, I strictly stick to either beer or wine, and rarely have more than a few drinks on a single night. That said, on those rare occasions (okay, not that rare, but, you know, not every weekend or anything) I have more than a few drinks -- even if it's just beer or wine -- I always wake up to a raging hangover. Nothing -- not a shower, coffee, or a greasy breakfast -- works to take the edge off. Only time. On those days, I feverishly look forward to about 6 pm or so where I finally start feeling like a fully-functioning human being.

On the four hour drive home from the wedding -- which only increased my suffering, I'm sure -- it suddenly hit me: This could be how I feel for a half a year -- especially given that time is really my only remedy to get through a hangover.

Given that I probably won't be doing much drinking the next six months -- which is a shame, because the Twin Cities has a bunch of awesome microbreweries that normal, healthy Jen would love to check out -- this is extra tragic.

A hangover and not even a good night to make it all worth it?

I'm holding out the small ray of hope that my tolerance for ABVD is better than my tolerance for alcohol.