If you get cancer, you should quit your job and go on Medicaid

Duh duh duh...

A POLITICAL POST!

For the most part, I've kept this blog pretty apolitical. After all, cancer doesn't care if you're a Democrat, Republican, or an Independent. However, by nature I am a political gal, and now that I'm out of the trenches of treatment, I thought it would be good to share my feelings and experiences with the U.S. healthcare system, and what cancer patients can do to help ensure that they will get through their treatment without crushing medical debt.

So, before I get into the thick of things, let me disclose something: I am a loud and proud liberal Democrat. FDR is my favorite U.S. president, and I think President Barack Obama will go down as one of the best presidents in modern American History. It's not just the whole healthcare reform thing -- which was, in the words of Vice-President Joe Biden "a big fucking deal" at the time it was signed into law in 2010 (after all, most U.S. presidents since Theodore Roosevelt have tried to pass some sort of healthcare reform legislation), and which has been even more successful than even its strongest proponents calculated. President Obama has taken this country from the depths of a recession into a period of (relative) economic stability, been the first president in U.S. History to support same-sex marriage (which then set the stage for SCOTUS to make that the law of the land), and has been an overall champion of a strong, resilient middle class for the 21st century.

So, that's where I stand on the political spectrum. To my Republican friends out there -- please keep reading and keep an open mind. While the issue of healthcare is highly politicized in our country, what I'm going to say in the next few paragraphs really has nothing to do with politics and everything to do with saving lives -- literally, emotionally, and financially.

You may have gathered from my headline that I recommend that if you get cancer, you should quit your job and go on Medicaid. Of course, for most people it is not that simple, but if you happen to find yourself in a similar place as I did -- getting cancer at age 26 or older (when you're no longer eligible to be on your parents' plan), not married, and making a modest salary (I worked in education, which I loved, but let's be real...it doesn't pay the bills like being a Wall Street investment banker would!) -- I'd highly recommend that you at least consider resigning from your job and enrolling in Medicaid. After all, jobs will come and go -- the average American worker now stays at one job for just 4.4 years, according to the Bureau of Labor Statistics -- but medical debt can, unfortunately, last forever.

My situation was perhaps a little different from most. I had been living and working in NYC at the time of my diagnosis. Before I even knew Medicaid was an option, I wanted to move back to MN, where I'm from and where my family lives, for treatment. Since I was not eligible for FLMA at my old job, my only option was to resign. After I made my decision, my parents and I looked at what my options would be on the MN healthcare exchange website (https://www.mnsure.org/). We figured I would be eligible for some sort of Obamacare plan. However, given that I no longer had an income, I was eligible for Medical Assistance, the Minnesota term for Medicaid.

At first, I felt a little guilty going on this. Even though, as I mentioned above, I am a liberal Democrat, I felt there was a stigma attached to Medicaid, and that I was somehow "cheating the system". After all, I was a college-educated "white collar" professional. I was upwardly mobile! I had a 401K (not that there's much in it, but still)! Medicaid was for "poor people" who were too lazy to get a "real job" (for the record, I never personally thought this, but unfortunately I think this is how our society views those on Medicaid, which made me feel uncomfortable going on it). However, when you have a life-threatening disease, you don't really have time to think about politics, so I took the leap and quit my job, moved back home, and enrolled in Medicaid.

Thankfully, Minnesota has one of the most generous healthcare systems in the country, and I was able to get treatment at the University of Minnesota, which is top-notch when it comes to oncology. I was never treated as a second-class citizen, or a leech on society, or any of the other awful things people on Medicaid or any other sort of public-assistance program are often thought of, at any point in my treatment. And for that, I feel extremely lucky. I feel even more lucky that, aside from co-pays (which were pretty minimal), my treatment was 100% covered -- this includes visits, medications and scans.

To be honest, I have no idea of the total cost of my treatment. But just to give you some perspective of how expensive saving yourself from cancer can be, let me share one medication I do know the cost of: Neulasta. You'll remember that I had to get an injection of Neulasta following each treatment of chemotherapy because of my severely low white blood cell count. Oh, it's just a quick injection, how much can that cost? Well, it came with a very hefty price tag: FIVE THOUSAND DOLLARS. I kid you not. The first time the nurse brought it out she breathed a sigh of relief, as oftentimes many private insurance plans do not cover it. I did this injection 11 out of 12 treatments, so if I would have been uninsured, or had insurance that didn't cover it, I'd be in the hole $55,000 -- on top of what the other medications and scans would cost. I am honestly nauseated at the thought of what my medical debt could have been.

Now, there is a reason why healthcare is so expensive in this country. It's a private market, and medicines that work are worth a lot. Profit is what drives these ground-breaking, life-saving medical innovations. And for the most part, this is a good thing. However, I don't know about you, but that figure seems absolutely insane. Like, unfathomable. And unfortunately, for many people this is the reality of what it costs to save their lives.

This is why I encourage anyone who is recently diagnosed to at least consider this option. While I know this isn't an option for many people -- maybe you cannot afford to not be working (thankfully, I was able to move back in with my parents, who kindly took me back into the nest), or you live in a state with a really crappy Medicaid system, or you are working your dream job and don't want to leave it -- if you're somewhere in between, it might be worth putting your professional life on hold to focus on getting healthy in a reasonably affordable way, especially if you have additional debt from student loans or a mortgage or whatever.

Without Medicaid, I would never have been able to return to my life in NYC. Without Medicaid, I would never be able to go to graduate school, which I am starting in the fall (and am super stoked for!). Without Medicaid, I would never be able to have my positive outlook on life and what I can do in my life, because I'd be too busy worrying about how I would dig myself out of an impossibly deep hole.

So there you have it. Medicaid saved me -- literally, emotionally, and financially. It's allowed me to resume my life and become a productive member of society again. And, most of all, it's allowed me to continue to follow my dreams and not let my life get bogged down by shitty circumstances beyond my control. And for that I am beyond thankful.

Wherever you fall on the political spectrum, I urge you to keep an open mind about government programs. Sure, many of them don't work as well as they should. In fact, many of them don't work at all. But there are many that do, and rather than vilifying them, we need to realize that these programs benefit real people. And in my case -- and many others -- they even save lives.

We live in the 21st century, in the richest country in the history of the world. We've made incredible gains in science. Diseases like Hodgkin's lymphoma, which used to be a death sentence, are now just a shitty bump in the road for most people. If we as a society can do that, certainly we can figure out a way to make quality healthcare affordable. But until that day truly comes, I am thankful that I was able to rely on Medicaid, and I encourage anyone else who is unfortunate enough to find themselves in Cancer Club to at least consider it as an option.

Thanks, LBJ!

LBJ, accompanied by President Truman, signs Medicare and Medicaid into law on July 30, 1965

First post-treatment check up = all good!

A few weeks ago, I went in for my first post-treatment check-up. This was just an exam and some blood work, so no scan this time (that will come in August -- gulp). Thankfully, everything looked and felt normal, though my white blood cells were still a below the low-end of normal, which Dr. Peterson said was not out of the ordinary considering my poor wittle immune system was under assault for 6 months with crazy strong medications. While I am happy about the results, I'm still a little nervous since my blood work and everything else -- well, everything minus the giant hard, fixed lump above my collarbone -- was pretty normal before I was diagnosed, so a scan is the only way I'll feel real closure that I am still in remission.

My scan will be in early August, so I have some time before full-blown "scanxiety" set in. Relapses generally occur at the original site of disease, so in my case any relapse would likely manifest itself in that node above my collarbone or in my chest. I routinely feel my neck and collarbone area for any possible lumps, but for obvious reasons I can't do that for the node in my chest. This is why follow up scans are important, since most people with Hodgkin's are diagnosed at stage 2 or onward.

Image courtesy of lymphomanation

By definition, stage 2 means the hodge is "in 2 or more groups of lymph nodes or an organ and 1 or more group of lymph nodes. In both cases, the 2 sites of lymphoma must be on the same side of the diaphragm." Most people on the forums and blogs I've read who are stage 2 or onward have had a lump in their neck or, most commonly, their collarbone, as well as an infected node in their chest. It's easy to monitor any changes in areas that are accessible, but not behind the chest cavity. Thankfully, it's standard for oncologists to scan patients every six months for the first year, and then once a year for a few more years, to make sure there is no activity lurking in difficult to reach areas. To my hypochondriac/health-obsessed hodgers out there, I can't stress enough the importance of staying up to date with your post-treatment scans!

So, my appointment was smooth and painless. However, I did have one unfortunate observation. During treatment, I was always the youngest patient in the waiting and infusion rooms. There is no surprise there, since cancer rates increase with age. Yet for whatever reason the waiting room was filled with young patients this time. I couldn't help but overhear a particularly sad exchange between the check-in receptionist and a patient:

"Do you have a port?" she asked.
"A what?" he replied.

She quickly put on a smile as she said, "Nevermind. The doctor will see you shortly."

I had no idea what a port was before I found myself in the midst of the cancer world, and this young man -- who couldn't have been over 30 and looked as healthy and as strong as an ox! -- didn't either. And why should he? Cancer should be one of the last thing a young person should have to worry about.

I don't know what kind of cancer he had, but my fingers are crossed that his treatment goes well, and that he'll come out of everything healthier than ever.

While young adult cancer is by no means "common" -- hence why it was so surreal to see so many young people at the oncology office -- the National Institute of Health estimates that over 70,000 young people (ages 13-39) are diagnosed with some form of cancer each year -- representing about 5 percent of all cancer diagnoses. Cancer is a shitty thing no matter how old you are, but there are issues unique to young people which makes cancer particularly difficult to deal with. Luckily, there are many organizations that can help young adults with cancer-related issues ranging from anxiety/depression to financial woes to how to pick up your life after a cancer diagnoses. Here are a few that I have found to be particularly helpful:

1. First Descents
2. Gilda's Club
3. Cancer Care
4. Cuck Fancer
5. Stupid Cancer
6. Cancer and Careers

Here is another list of even more organizations and scholarship programs. 

In other medical news, I went to the dentist for the first time in close to two years. I was just about to go for a check up and teeth cleaning when I was diagnosed last summer, but had to put it on hold during treatments because of a risk of infection. I had to continue to delay it because of the two extra months of blood thinners, which meant that by the time I was in The Chair I was terrified that my mouth had become a haven for cavities. Thankfully, my body seems to have done its job in that department, and I was cavity free! The highlight of the visit is when the dentist said that everything was "pretty uneventful and boring".

After a year of horrendous medical news -- with most doctor's visits for treatment, rather than preventative care, to be called "pretty uneventful and boring" was like music to my ears!

First post-treatment scan = CLEAN!

I will pull a Dr. Peterson and cut right to the chase (he knew I didn't want to engage in any small talk before we addressed the elephant in the room -- my scan): my post-treatment PET/CT scan came up clean, which means I'm officially in remission!

As you can imagine, I am absolutely elated! While the statistics were in my favor -- research shows that about 90% of Hodgkin's patients who have a clean interim scan also have a clean post-treatment scan -- I was still incredibly nervous. Chemo was much easier than I anticipated, but I still wanted more than anything to be done with all of this cancer crap. Let's just say that it was a very unpleasant 24 hours leading up to the scan.

And it turns out there is a term for this: scanxiety.

Deep down I really believed that I would be okay, but the days leading up to the scan -- and then the awful 24 hour waiting period -- really tested my so-called glass half full mentality. Sure, 90% of people turn out just fine, but what if I was part of the 10% who have to continue their battle? After all, I had the misfortune of getting diagnosed with super rare cancer; who's to say my string of bad luck wouldn't continue? You know what they say: when it rains, it pours!

It was with that attitude that I walked into Dr. Peterson's office preparing for the worst. So when he gave me the all clear, it took a few moments to settle in. Even now -- three days later -- I am still sort of in disbelief. I suspect I will continue to feel this way, at least for the immediate future. From reading other Hodgkin's survivor stories, it seems like it takes a good year (at least) to no longer feel anxious about every little pain or bump, and to fully accept that your body is healthy.

So until I feel that sense of health zen, I will try as hard as possible to balance my hypochondriac tendencies with positive thinking.

Here are a few other takeaways from my scan and my meeting with Dr. Peterson:

• My PET scan was clean, but my CT scan still showed the lymph node in my chest is enlarged. This is very common with my type of Hodgkin's (Nodular Sclerosis), which oftentimes leaves permanent scar tissue. Dr. Peterson said it will probably continue to shrink, but it may never go back to its regular size. 
• I am officially blood clot free! That's right, folks, the pulmonary embolism that came up on my interim scan has completely dissolved.  
• Even though I'm cancer-free and getting healthier by the day, I am still considered immunosuppressed, and likely will be for about a year or so. Stupid germs always trying to cramp my style!
• I feel pretty much 'normal', but Dr. Peterson says in a few months I might start feeling even better as my body gets stronger, which is something I'm totally cool with! 
• While I have a pretty good chance of staying cancer-free, if I were to relapse, it would most likely occur within two years of treatment. I initially figured if I were to relapse, I would be put on a more intense chemo called ICE (Ifosfamide, Carboplatin, Etoposide) and then undergo a stem cell transplant. That is the general next course for refractory Hodgkin's. However, Dr. Peterson said that since I didn't do radiation as part of my front-line treatment, if it comes back, radiation -- and no additional chemo or stem cell transplants -- could be an option for treatment. It sounds weird, but that actually made me happy. While I hope that the hodge is dead as a doorknob, it is somewhat comforting to know that it is theoretically possible to kill it with a simple round of radiation. This makes me wonder why radiation is ever given as part of front-line treatment. Sure, it improves the odds of a relapse a bit, but once you do it, you can never use it as a treatment ever again. So those who relapse after getting radiation would immediately have to go for the stem cell transplant. I'd rather skip the radiation -- and the nasty long-term side effects -- and only use it as a last resort if I were to relapse.

While I'm not officially done with Hodgkin's, I feel pretty confident that I've made it through the worst of it, and the next few years will just be a series of uneventful check ups and scans. 

In other news, I am officially moving back to NYC on April 3rd! Scott and I booked our tickets a few weeks ago, before I knew the outcome of my scan. I was a little bit worried I would be jinxing myself, but the tickets were cheap and after a six-month hiatus, all I wanted to do was return to my regular life, even though I will miss all of my Minnesota friends and family. Now I just need a job, and in my field (higher education), that might even be harder than fighting cancer!

I also just came back from a wonderful family vacation in the Dominican Republic to celebrate being done with chemo (this was pre-scan, so that was still the elephant in the room) and my mom's 60th birthday. Minus some...gastrointestinal issues that struck our group, we had a great time! I brought my wig with, but the minute we touched down in the tropical weather I said, "screw it" and instead pranced around in my very short "pixie". Chemo makes your skin extra susceptible to sunburns, so I had to cover up mom-style with a bunch of cover-ups and hats, but i still got to see this everyday:

Here are a few more pictures, all courtesy of my mom and my sister because I am a horrible millennial when it comes to documenting my every-waking moment on my iphone:

With my clean scan things seem to finally be falling into place. A big shout out to everyone who has supported me through this whole ordeal -- especially my mom, dad, and sister and the Meslows! Each and every one of you are awesome humans and I am so, so grateful.

There's no doubt about it that #hodgefreeisthewaytobe. I will wrap things up the way they started on this final note:

One month chemoversary!

It's been one month and one day since my last treatment of ABVD chemotherapy. Time flies when you're not having chemo!

While I've had a few 'hiccups' (I'll get to those later), all and all it's been a pretty great month. Here are some updates:

Overall health
I've been feeling great...as in pre-treatment great! While some people are horribly sick at the time of diagnosis, my only symptom was my swollen lymph node above my collarbone. Other than that I felt totally healthy, which is how I feel now. I have read about many people who undergo ABVD who say that it takes months -- if not years -- to feel normal again. I consider myself very lucky that it took me just a week or so after treatment to feel normal. Of course, Hodgkin's taught me that feeling healthy doesn't necessarily mean you are healthy, but overall I think this is a pretty good sign that my body is strong and I have, indeed, defeated The Hodge.

Fitness
Growing up, I was always pretty sporty, playing a bunch of organized sports at various levels of competitiveness. In college and beyond, I still liked to stay active but I never had the discipline to go the extra mile (pun intended!) without the structure of organized sports. That said, I would like to do some sort of physical challenge this year. I will hopefully be going on a kayaking trip with First Descents this summer (they are an amazing organization -- check them out!), which is something I've been excited about since I started treatment. Additionally, I am considering the Five Boro Bike Tour, which is a bike ride through each of the New York City boroughs (it's about time I get to the Bronx!) and/or doing some sort of triathlon.

Thankfully, I was able to stay pretty active during chemo. I wasn't doing Crossfit or anything, but I did continue to do yoga/cardio classes. Since I've been done with chemo, I've tried pushing myself more in each class in preparation for whatever the Fun Sporty Adventure of 2015 may be.

Hair
The hair gods were pretty merciful to me during chemo. While I lost most of the hair on my head, I kept both my eyebrows and eyelashes. They aren't exactly what they were pre-chemo, though. They did shed a bit, but mostly they bleached. However, with regular mascara and eyebrow mascara (which is a thing -- go figure), they look pretty much normal. Unfortunately, they still have not changed back to their normal color, so I'm starting to get a little impatient. Beggars can't be choosers, but sometimes all a girl wants is to have some Cara Delevingne eyebrows!

As for hair on my head, I'm happy to report that it's growing -- faster than I expected, but slower than I want. Right now it's almost to a short pixie, though there are still a few patches that are thinner than others. Oftentimes post-chemo hair grows in a different color or texture for the first few months. Mine is the same color, but the texture is a little different. Think what a mild to moderate electrocution would do to your hair, and that's how mine feels. I've been trying to limit how often I wash it, and I've been conditioning it a ton with coconut oil. I like to think that is helping, but right now it's still pretty...electric. I still wear my wig most of the time when I go out, though I have been starting to rock my 'deliberately short pixie' (that's what I'm calling it, rather than my 'electric post-chemo hair') at the gym, but that's only because I get sweaty and I'm sick of wearing scarves.

Needless to say this is a BIG improvement from my awful male pattern baldness days. I do have a few pictures that I took to document the terror, but those bad boys will never see the light of the internet so I guess I'll just have to leave it to your imagination.

So, for the most part, all good, right? Almost. I mentioned above that I have had a few 'hiccups'. These 'hiccups' are all attributed to blood thinners -- first the dreaded Lovenox injections and now the almost as dreaded Warfarin pills. What's so bad about taking a pill, you might ask. Well, this pill comes with some strings attached: finger pricks.

My last post discussed the process behind Warfarin, and how it takes some trial and error to find the right dosage. Factors such as diet -- those who eat more Vitamin K will need a higher dosage -- and body chemistry will affect the dosage.

I started on 5 mg (1 pill) of Warfarin on February 19th. I went in twice in my first week to get my INR checked. To do this requires a finger prick where the nurse then smears your blood onto a machine that gives you the INR instantaneously. I was told that it could take 3-7 days for the Warfarin to "kick in" -- meaning, to have an impact on INR levels. Until I reached my ideal 2-3 range, I would have to continue with the Lovenox shot. For those of you keeping track, that means 2 jabs of Lovenox and a finger prick. What a scam!

Well, after a week, my INR levels stayed the same -- 0.9. As I mentioned in the earlier post, this is a normal level for normal people not on Warfarin. My goal was to get to 2-3. So, this required playing with my dosage. We tried a couple days at 10 mg (2 pills), which brought me up to a whooping 1.1! Then we tried a couple days at 15 mg (3 pills), which brought me to 1.9. So close! At this point, my doctor advised me to reduce my dosage to 12.5 mg (2.5 pills) and get re-tested after the weekend. Come Monday, my INR level was 2.1. Bingo!

You would think that would be it, right? That 12.5 mg was the secret dosage? Well, three days later -- yesterday -- my INR was at 2.9, which is the high end of what they want. Let's just say my blood definitely seemed thinner at that point -- I bled through two different bandages after my finger prick. My new plan is to switch of my dosage from 10 mg to 12.5 mg every other day until my next test on Monday. Hopefully by then things will be stable so I can stop my tri-weekly finger prick.

While it's been nice to not have to do the twice a day Lovenox, these finger pricks are a big pain in the you-know-what. Luckily, I only work part-time and have a flexible schedule; I don't know how people who work full-time are able to accommodate all of those appointments! When all is said and done, though, I'd much rather go in for a finger prick than get chemotherapy, so I guess it's all about perspective.

So, until my scan on March 18th, I think things will be pretty quiet. And sunny. And warm. And relaxing....because next week I am going to the Dominican Republic! My family and I are going to celebrate the end of chemo and my mom's upcoming "milestone" birthday (I don't think she would approve of me telling the world her age). Ciao, winter!

Peace out, Lovenox

I hate to sound like a broken record, but I really, really hate Lovenox. For those of you new to my little corner of the internet, Lovenox is a blood thinning injection that I have had to do twice a day for the last three months following a pulmonary embolism which was picked up on my interim PET scan. The injections themselves were often painful, but what has been the most difficult is making the lifestyle adjustment to make sure that I do both injections within twelve hours of each other (or as close to that as possible). Nothing kills the conversation than saying "Brb, my mom/dad/boyfriend have to give me a shot in my stomach, because I'm too much of a baby to do it myself. But hold that thought!"

So, it is with GREAT pleasure to announce that I'm almost done with Lovenox! That's right, folks, if all goes to plan, my last day should be either February 23rd or February 24th!

Before you get too excited, though, there's a catch: I'm still going to be on blood thinners for another three months. However, rather than doing the Lovenox injections, I am starting Warfarin, which is a once-a-day pill.

A PILL!!!!

AS IN NO MORE SHOTS!!!

Even though Warfarin is no walk in the park -- I'll explain more about what the next few months will entail in a moment -- I think just about anything is better than a twice a day injection in the stomach. Finishing chemo was a big milestone for me; in a weird way, this is almost a bigger milestone since these bad boys effected my daily life more than a bi-weekly chemo session with limited side effects (for the most part).

Now, on to the logistics of Warfarin. I took my first pill today, even though I still have a few days left of Lovenox. This is because it can take up to seven days for Warfarin to start doing its job. I have a lab appointment on Monday to see how things are working where they will test my blood for its INR levels. A normal person who is not on anticoagulation should have an INR at around 1. The target INR for someone on Warfarin is somewhere between 2.0 and 4.0. As of today, mine is at 0.97. I'm a little confused by this since I am on anticoagulants so you would think mine would be higher, right? I am not concerned, because before we even got the reading my doctor told me it would take a few days to get to this ideal rate. However, a nagging voice in my head keeps saying if I don't even have "thin blood" after 3 months of injections then WHAT WAS THE POINT OF THE INJECTIONS?!! Alas! I'm sure there is a good medical explanation for this that I just don't know yet. Dr. Jen doesn't know everything, after all.

I'll have to get used to this INR test, since I will likely being doing it once a week for the next month or so to help figure out my exact dosage. This is because INR levels can fluctuate (and when they fluctuate, the dosage must also be adjusted) depending on diet -- specifically Vitamin K intake. Vitamin K? Random, right?

Well, not so random: our bodies use Vitamin K to make blood clotting proteins.
Warfarin works by working against Vitamin K. Luckily, this doesn't mean I have to avoid Vitamin K all together while on Warfarin -- thank god, because I love green smoothies and yuppie salads -- it just means that I have to be very consistent with how much I consume so it corresponds properly with the Warfarin dosage. Translation: if you aren't a fan of green leafy vegetables and eat a diet low in Vitamin K, you wouldn't want to eat a giant spinach salad because that would drastically alter your INR rate. But if you're used to eating that giant spinach salad, it's okay to eat it every day since your body -- and your Warfarin dosage -- are used to it.

Other than that, it's been a relatively uneventful few weeks on the health front. Aside from the usual vein pain directly following chemo and a little more fatigue than usual, I feel great! Today was officially the longest my body has gone without chemo for 6 months, which is a pretty awesome feeling.

I'm also happy to report that my hair has begun to grow back...aka my male pattern baldness is receding (get it? clever, huh?). The texture is a little...off...I sort of look like I got electrocuted or something, but after 6 months of being pretty much bald, any and all hair is welcome! I've even sported just a headband at my yoga classes and let the rest of my thin (but there!) hair see the world (you're welcome, yogis). It is a welcome relief from scarves which just scream CANCER. Luckily, I never lost my eyelashes and eyebrows; they thinned a bit and also lightened in color, but with a little makeup they look pretty much normal.

Speaking of normal, or healthy, I had an interesting eye appointment last week. I have a light distance prescription and decided to go in to see if anything has changed, since driving, which I never did in NYC, has seemed to highlight some of my deficiencies on the visual front. In addition to checking my vision capabilities, the optometrist also did some other tests to determine my overall eye health.

"Everything looks good! You've got very healthy eyes!" he said.

"What all did you test for you?" I asked anxiously.

He rattled off a list of things I had never heard of, and finished up by saying, "So, in a nutshell you really don't need to worry. You're young and very healthy!"

It was a really surreal feeling to be told "you're young and healthy" after who knows how long -- there really isn't a way to know how long I had The Hodge before being diagnosed -- I was not healthy. Part of me wanted to bow at his feet and say thank you, thank you, thank you, but I thought that might be a little weird. So instead I just said "thanks" and was on my merry way.

After 26 years of being told I was healthy by doctors, and then a six months stint of being a cancer patient, it sure feels good to go back to normal -- though I'm still holding my breath that my March 18th PET scan will come back clean before I get too comfortable being "young and healthy".

Chemo #12: The light at the end of the tunnel

After 6 cycles (aka 12 actual infusions), I can finally say I'm done -- forever -- with ABVD!

This doesn't mean I'm officially in the clear with beating Hodgkin's -- I still have to wait for my scan on March 18, which will show if I'm officially in remission. If, on the off chance, it still shows some metabolic activity -- which my doctor thinks is highly unlikely, given my clean interim scan after 2 cycles of ABVD -- I would have a whole new, likely more intense, treatment regimen. BUT this would not be ABVD. So, even though I don't know if I'm officially done with Hodgkin's, it's good to know that I can speak with absolute certainty -- which is something you can rarely do in Cancer World -- that I'm done with ABVD for good, and that alone is enough to celebrate.

#BritBrit4lyfe

Now, on to the nitty gritty. My last infusion went pretty smoothly. We stayed away from my right arm, following the weird rash/irritation that happened after chemo #10. My left arm, though, wasn't perfect, and the first vein we tried on the top of my forearm didn't work, so we had to move to my hand (you might remember my weird, semi-irrational fear of the hand vein). Not the most pleasant IV experience, but not too bad either.

The occasional vein dramz aside, I can say with 100% confidence that I'm glad I didn't get a port. It seems like ports are more common than not, so for anyone who is recently diagnosed and happens to read this, do not feel like a port is necessary to complete ABVD. If you are extremely squeamish with needles, it's probably a smart thing to do, but if you can handle a few pokes here and there I think it's best to keep things as simple as possible and just go the IV route. In the grand scheme of things, you only have to do it 12 times. Each time (for me, at least) took no more than a minute of maneuvering to get the right spot. So really we're talking about 12 minutes of discomfort -- which is shorter than a surgery to get a port installed. Obviously this is a personal decision, but I feel it's important to add my two cents, since it seems like ports are almost a unanimous consensus among Hodgkin's patients.

The rest of chemo went by pretty smoothly, and we finished in about two and half hours -- around noon. The usual suspects, Scott and my mom, accompanied me, along with Adriana (aka Mote -- long story where that nickname came from), who I've known since we were in second grade. Jenny and Cathy also stopped by for a bit, which definitely helped pass the time!

After chemo, I normally go home, eat lunch, and veg out, but we had to stick around a little longer because I scheduled a last minute appointment with Dr. Peterson at 2:30 pm to talk radiation. To kill some time, we went out for lunch, where I got some delicious Pho (which is actually pronounced 'Fuh'. Go figure!). At the end of the meal, I got a pretty relevant fortune cookie:

Today is a lucky day for those who remain cheerful and optimistic. 

While I'm definitely pretty neurotic about my health, deep down I do feel optimistic that I'm done with this whole saga. Sure, a positive attitude won't help me get a clean scan, but it won't hurt, either. This next month of limbo will definitely be challenging for someone who wants to know everything, right away, right now. But I'm trying to look at it with a glass half full attitude. Given 85% of people diagnosed with Hodgkin's are cured with the first line therapy AND I had a clean scan AND my fortune cookie basically told me things will be fine, I have more reasons than not to believe things will work out.

So, as you can see I walked into my appointment with Dr. Peterson feeling pretty good, and I left feeling even better. He explained more about radiation, and which cases benefit from it and it which don't. It sounds pretty counter-intuitive, but radiation is only an option for Hodgkin's patients who are stage 1 or stage 2. More advanced disease (stage 3 or 4) is strictly given chemotherapy. Now, it's sort of a toss up which patients at stage 1 or 2 get radiation. It is more common for those who have "bulky" tumors (those over 10 cm in size), but many patients without bulky tumors also get radiation. This is where there are a few trains of thought. The two most common treatment options for patients at stage 2, without bulky tumors, are as follows:

1. 4 cycles of AVBD + radiation
2. 6 cycles of ABVD and no radiation

Unfortunately, as I mentioned in my recent post on radiation, there isn't really a consensus among oncologists which is the better option. Dr. Peterson is very much on board with option 2 -- mainly because an additional 2 cycles of chemotherapy are much less toxic in the long run than radiation. Since I had a clean interim PET scan, which meant I was very responsive to chemotherapy, radiation would be sort of an overkill, needlessly exposing me to more risks. It's clear that Dr. Peterson is more of a marathon runner than a sprinter, repeatedly talking about his goal to make sure that his patients long term quality of life is preserved. 

What really made me feel more comfortable, though, was his explanation that I was being treated the same way as someone with stage 3 or 4 Hodgkins, where the standard treatment is 6 cycles of ABVD (some with advanced stages are given an alternative chemotherapy regimen of BEACOPP, but that is a whole other can of worms that I'm too lazy to elaborate on -- lucky you!). Basically, I was given a little bit more chemo than I probably needed to ensure that all the little hodgers were obliterated, in place of radiation, which is more harmful in the long run. If 6 cycles of ABVD, on its own, is enough to get patients at stage 3 or 4 in remission, it seems like it's more than enough to get me, at stage 2, there.

I mentioned earlier that, in addition to talking to Dr. Peterson, I also wanted to get a second opinion, just to be sure. At this point, I feel very confident in Dr. Peterson's explanation of things and no longer think a second opinion will be necessary. While it's good to have all options on the table, my case seems pretty black and white as far as radiation goes, and I feel very confident in my treatment plan (which says a lot, since I am normally full of doubt or uncertainty when it comes to medical issues).

So, I walked out of the Masonic Cancer Center feeling pretty good about a lot of things: that I was done with ABVD, that radiation would not be necessary in my case, and that I would probably have a good scan in the next month. 

The last development that really got me on the Happy Train was learning that yesterday, February 4, was World Cancer Day, which, according to their website, exists to "take a positive and proactive approach to the fight against cancer, highlighting that solutions do exist across the continuum of cancer, and that they are within our reach." Cancer is no longer the death sentence it once was, and I truly believe that in a few decades (or less!), we will have come even further with identifying more of the causes of cancer, which will help in prevention efforts, and, more importantly, new, less toxic, and more effective cures.

I'm still in the process of debriefing myself on this whole crazy experience, and will likely have more thoughts to share in the coming weeks. But for now, I want to say a HUGE thank you to each and every one of you for all your support and encouragement. It means so much to me, and I am so incredibly touched. Namaste. :)

Doing my part to defend modern medicine

Image courtesy of Refinery29

Between the controversy of the Connecticut Supreme Court mandating Cassandra C. to receive chemo to treat Hodgkin's lymphoma to the rise of the anti-vaccine movement, it's been a rough few months for the medical establishment (and science as a whole).

In an effort to do my part to convince the world that modern medicine is a godsend, I recently published an expansion of my blog Why I will no longer call chemo "poison", in Refinery29. Click here to read the article.

Aside from sharing a moral compass (deep down, Jesse is a good guy -- unlike Walter, who was always had a darkness within him just waiting for an excuse to let it loose), Jesse Pinkman and I probably don't agree about much. But there is one thing we do agree on...