To radiate or not to radiate...that is the question

Hi strangers!

It's been a little while since my last update. Here's what's been going on the last few weeks:

Two days after chemo #10, I had some major vein pain near where the IV was administrated. This has happened from time to time throughout chemo, but never as bad as this time. Adding to the misery was a huge oval-shaped rash that developed that was about 5 inches long and 3 inches wide. I called Masonic right away, worried that this could be tissue damage as a result of Adriamycin. They said this would be unlikely, as tissue damage would happen when the drugs were actually being administered. Phew! The most likely culprit was either some sort of infection (which was quickly ruled out, as I did not have a fever) or just plain ole vein irritation. Bingo!

In addition to the rash, which lasted two more days, I developed even more bruising and a few welt-like things on my skin. The pain was also very intense for another week. Needless to say this was my worst vein experience yet and I have officially declared my right arm OFF limits for the rest of chemo.

Some more updates:

• I had another pulmonary function test to make sure the Bleomycin hasn't totally warped my lungs. My lovely friend Heather who was visiting from DC accompanied me to the test and was a great support as I freaked out about how much I hated this test. I'm happy to report things went well and my lungs are doing just fine. My lungs were at 95% at my first PFT. My second test showed them at 88%, and my final one stayed at 88%. For comparison, anything above 80% is considered healthy. So, I'm doing okay on that front!
• On January 21, I received chemo #11, which was a breeze in comparison to the last round. The nurse made sure to use my left arm this time, thank god. A quick IV in and we were good to go (and no issues afterward)! My sister Rachel accompanied me for this round of chemo, and boy, is there something to be said for the power of genetics! The Kalaidis family has a very keen sense of smell (it must be our big noses), and right away she complained about the sterile smell of the chemo ward. As I've mentioned before, I haven't really gotten full on nauseated, but I do get queasy/grossed out with the particular smell of antiseptics and saline. Hypochondria also runs in the family. After my oncologist checked my neck/collarbone area to make sure they were free of nodes (they were), Rachel immediately began her own self-examination and almost ventured so far as to ask for her own exam. You know, just to be safe and all.

All in all, chemo #11 was one of the easiest treatments I've had so far. They say the effects of chemo are cumulative, but that hasn't really been my experience. Instead, I've had a few random not-so-great chemos with not-so-great side effects that have been scattered throughout. I guess I can't complain if I'm one chemo away from being done with treatment and still feeling pretty normal!

Before I leave you on that happy, optimistic note, I have one other area I want to discuss: radiation. At my first meeting before I even began chemo, Dr. Peterson laid out my treatment plan: 6 months of ABVD and likely no radiation. He stressed that this was not set in stone -- never say never in the world of medicine -- but given the characteristics of my cancer (smaller tumors spread out around my chest and neck, rather than one or two bulky tumors), Dr. Peterson felt that radiation would be of little benefit to me and could bring a lot of adverse side effects, such as thyroid malfunction, lung/heart issues, and secondary cancers. 

At the time, I was happy to hear this. Yay, less treatment! Not only would I be done sooner, I'd avoid even more potential complications from treatment! 

Well, a study I came across last week has made me question my opposition to radiation. The study found that the most recent trend of treating early-stage Hodgkin's (stage 1 or 2) with chemotherapy only, rather than chemo + radiation (which used to be the norm) has actually had an adverse effect on survival rates. For instance, Hodgkin's patients at 2A (what I was staged as) either receive 4 cycles of ABVD + radiation or 6 cycles of ABVD and no radiation. In the last decade or so, more and more oncologist have recommended option two (which also so happens to be my treatment plan). Yet the survival rate for chemo + radiation is 84.4%, compared with 76.4% for those who received chemo only. 

While this isn't a huge difference, it's significant enough to make me think I might want to get a second opinion, just to be safe. I completely trust Dr. Peterson and think I will probably still stick to the game plan and avoid radiation, but just having the peace of mind of another expert's opinion will make me feel better about everything, though from what I've read over on the Hodgkin's lymphoma message board, oftentimes oncologists put the ball in the patients' court when it comes to radiation, which I guess is both a good thing and a bad thing (good, because freedom of choice! bad, because freedom of choice!).

There have been a few times in my life where I've had to make a big decision where I've wished I was born in North Korea so I wouldn't have to make my own decisions, ergo it wouldn't be my fault if I chose the wrong one. Let's just say Pyongyang is looking pretty good right now...

Chemo #10: Why I will no longer call chemo "poison"

Happy 2015, everyone!

From delicious meals to goofy holiday movies to great conversations with family and friends, I had a wonderful wrap up to 2014. While it would have been nice to wrap up all things Hodge in 2014, I guess I can't really complain since I have LESS THAN A MONTH LEFT OF CHEMO!! That's right, folks, if all goes to plan, I have just two treatments left -- January 21st and February 4th -- and then a post-treatment scan 4-6 weeks later, and then I'm (hopefully!) donezo!

I had my most recent treatment, chemo #10, yesterday, and it went much smoother than last time -- aka we got a good vein right away, and it stayed a good vein all the way through! My nurse was Andrea, who I've had a few times now and who is a pro at finding veins. In fact, Andrea was the one who rescued me way back during chemo #2 when I had my first vein mishap. In a nutshell: go Andrea!

I also had quite the posse cheering me on. In addition to Scott, who is a regular at this point, Anna and Abram were in town from Washington, DC, and generously spent some of their hard earned winter break from Georgetown Law in the chemo ward with me. Ashley and Brittney also stopped by to hang out, and we all had a blast (or, as much of a "blast" as one can have in the chemo ward). Since the majority of patients I see in infusion are well into their golden years, I think it's probably safe to say that this #millennialinvasion was the largest number of people under-30 to ever be under their roof at the same time. As usual, the staff at the Masonic Cancer Clinic were wonderful and accommodating, finding chairs for everyone and letting us shamelessly raid the snack cabinet. Oh, and the older gentleman next to us didn't even seem to mind our probably louder/more inappropriate- than-what-is-considered-polite conversations; he snored through it all (though how someone can sleep during infusion is beyond me!). So thanks, friends, for your wonderful company and support!

While treatment went well, I felt very fatigued afterward and vegged out the rest of the day. I also felt more nauseated than usual, which sadly prevented me from eating Jenny Meslow's world-famous enchiladas (Jenny always makes my family a wonderful post-chemo meal), and instead I got stuck with an uninspiring bowl of chicken noodle soup. Luckily, though, after dinner I think I found the nausea culprit: the gauze wrap they use to cover IV wounds! What had trigged nausea in the past was the thought of the sterile smell of alcohol rubs or the sodium chloride. Well, guess what? That is exactly the smell of this gauze wrap! Once I took it off and showered, the nausea miraculously went away! So, future cancer warriors: nausea is most often caused by the chemo drugs themselves, but it can also be caused by this funky smelling stuff!

Alright, those were the highlights from Chemo #10. Now, on to a more philosophical topic. You're probably wondering about the headline, "Why I will no longer call chemo "poison". In previous posts, I had joked around about going into infusion to "get poisoned". While I wrote this as a joke/to be dramatic, this is not entirely factually incorrect -- chemotherapy damages both cancer cells and healthy cells and -- for most people, at least -- causes many unpleasant side-effects, many of which I have detailed in my blog. While it is definitely not an ideal way to treat cancer, right now it's the most effective treatment we've got.

So, having said this, I am incredibly saddened to read about a 17 year old girl named Cassandra in Connecticut who was recently diagnosed with Hodgkin's Lymphoma and is trying to refuse treatment because, in her mind, it is "poison". Without treatment, Hodgkins is fatal. Luckily, though, it is one of the most treatable cancers out there, and with standard chemotherapy treatment, the 5-year survival rate for patients is 90%. Obviously, most Hodgkins patients live much longer than that -- as I mentioned in my last post, once a patient hits the 2 year mark the chances for relapse go way down. At the 5 year mark, a relapse it is extremely unlikely, to the point that most doctors feel comfortable declaring the patient as "cured".

Since Cassandra is 17 and a minor, her parents are the ones legally responsible for her medical care. Since they fully support Cassandra's decision to forego treatment, the Connecticut Department of Children and Families have intervened and removed Cassandra from her parents' stewardship, accusing the them of neglect, and put her into temporary state custody. She is currently being held in the hospital and receiving treatment against her wishes.

Obviously, this is a very complicated situation, both legally and morally. In general, I believe that adults have the choice to pursue or refuse treatment as they see fit. And while it makes me extremely uncomfortable, I even believe that physician-assisted suicide should be legal on a federal level in the case of a painful terminal illness (this belief was reinforced after the Brittany Maynard saga last year).

But this case is different. For one, Cassandra is still a minor -- a painfully ill-informed one at that. And two, as they say in The Hunger Games, the odds of a full recovery are ever in her favor, so I think it's fair to say that the decision to refuse treatment is not only stupid; it's also extremely irrational. If Cassandra was diagnosed with a terminal illness and told she had only months to live, I might feel differently, but the facts are that she will definitely die without treatment and most likely survive with treatment.

I think in a few of decades we will look back at chemotherapy as a barbaric form of treatment. I mean, with chemotherapy you have to get sicker in order to get better. That sounds fun, said no person ever! Even now, there are many promising studies demonstrating the efficacy of immunotherapy and other non-chemotherapy approaches to treatment. But these studies are still in their infancy, and it will likely be at least a few years before doctors have an equally effective alternative to treating cancer.

So, since chemotherapy is the most effective way to treat cancer and is directly responsible for saving thousands of lives each year, I have now declared a moratorium on calling it "poison", even if I am just kidding around. What it really is is a crucial, life-saving medicine that I am thankful to be receiving.

I'll wrap up by summarizing a conversation my mom had with my great uncle shortly after I was diagnosed last summer. My great uncle is a dermatologist, and has been practicing medicine since the 1960s. He told her that when he was going through medical school -- and for the first decade he was in practice -- Hodgkin's was basically a death sentence. It wasn't until the 1970s and the arrival of ABVD that it was able to become one of the most curable cancers out there. Just like that -- thanks entirely to innovations in modern medicine -- thousands of lives have been saved each year.

While I am not in the clear yet, I am going to say a premature 'thank you' to the chemo drugs for doing their job and killing The Hodge. Adriamycin, Bleomycin, Vinblastine, and Dacarbizine, I salut you (even if you did make me lose my hair)!