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!