Friday, February 20, 2015

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".

Thursday, February 5, 2015

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...