Well, I'm happy to say that chemo #3, aka the chemo that represented me being 1/4 of the way done with ABVD, hopefully forever, went MUCH smoother. It turns out the Neulasta shot, which stimulates your blood marrow to make more WBCs, really works wonders! My WBCs were at 5,800 per microliter (mcL), which is within the normal range for a normal person not going through chemo (the normal range is between 3,300 to 8,700 WBCs). Adding on to the good news, my neutrophils, which are the part of your WBCs that are responsible for fighting infections -- probably the most important factor which determines if you can get chemo on time -- were at 3,400 (the normal range is between 2,500 to 6,000). For comparison, my numbers last time were at 1,500 for WBCs and just 100 for neutrophils. Aka it was a miracle that Bubble Girl didn't pick up any weird infections during that week or so where I had virtually no immune system (thankfully, Ebola was yet to penetrate U.S. borders at that time).
I really couldn't be more excited about these blood results. The last few weeks have been really annoying avoiding potential germs. I definitely wasn't perfect -- I still ate out and socialized -- but I was always paranoid that I was cheating fate. To compensate, I washed/sanitized my hands all the time, OCD-style, to the point where I now have multiple painful hangnails from dry skin. I'm sure the arrival of this chilly fall weather isn't helping moisturize my skin either.
Of course, I don't want to get too cocky with my swanky new Neulasta-super-immune system and revert back to my normal scummy ways, but I must admit that it is nice not to have to be so careful all the time. When I was first told I would have to have my mother jab me with a Neulasta shot after each chemo, I was really disappointed. As I mentioned in my chemo #2 post, most doctors hold off on ordering a Neulasta shot until things get really bad, since there are some other potentially bad side effects that come with it, which can include severe bone pain (which, thankfully I didn't experience last time) and, more troubling, the potential to potentiate the negative pulmonary effects of Bleomycin (the B in ABVD). My doctor told me to notify him ASAP if I was having any problems breathing or wheezing, but luckily I haven't experienced anything yet.
So, it's kind of a blessing and a curse at the same time. On the one hand, I have a regular immune system again, so my chances of being hospitalized from a routine infection go way down and I can live my life without worrying about germs all the time. Additionally, there should be no reason that I will have to postpone any more chemo treatments, which is great because ABVD is most effective when given on a tight schedule of every 14 days. Plus, who wouldn't want to get this crap out of the way as soon as possible? On the other hand, it could be wrecking havoc on my lungs. I may bring up dropping the Neulasta later on, as some patients I've read about have done successfully, to try and offset this risk, but for now I think I'll stick with it since I haven't noticed anything funky. I wish we lived in an age where science figured out a less toxic way to treat people with life-threatening issues, but until then I guess I'll have to keep telling myself, hey, a little lung damage is better than dying.
The other good news is that my veins were MUCH more cooperative. I think the main thing had to do with having an excellent nurse, Haley, who was all business about finding that perfect bouncy vein and striking it at just the right angle. She was flawless. And unlike last time, this vein didn't randomly block itself off, so I was able to do all my pre-chemo nausea drugs AND the chemo drugs with no problems. And almost 2 days later, there's still no bruising. All and all, I was in the infusion chair for about 2.5 hours -- a big improvement from the last two times which were more like 4 hours. Don't worry, though, I still had plenty of time to catch up on gossip magazines courtesy of the wonderful Jenny Meslow, as well a chance to watch some Gilmore Girls with my mom (naturally, Scott zoned us out in favor of solving riddles on his Gameboy. So Ron Swanson of him). But seriously, guys, Gilmore Girls is on Netflix right now! Why are you reading this blog when you could be binge watching it (am I right, TV twin, Heather??)?!
As for some updates on other common chemo side effects:
- I still have yet to experience any nausea! And this is after yesterday, one day post-chemo, where my dad and I severely overdid it with some greasy Dominos pizza. Yay!
- I've noticed a bit more fatigue, which feels like a lot like a hangover -- not on the nausea front, thank god, but in the sense of not having motivation. Luckily, this still isn't too bad and is mainly only for a few days or so. As I mentioned in my last post, really forcing myself to be productive on those days usually makes me feel better, both mentally and physically. Having a job that forces me to have a set schedule has also been helpful.
- Unfortunately, the hair loss came right on schedule. Two treatments ago, on September 18th, Dr. Peterson warned me that the hair loss would likely come any day now (usually it starts within 2-3 weeks after your first treatment. My first treatment was on September 4). Yeah, yeah, I thought. Since my hair felt thicker than ever with my new bob, I thought I would be able to defy the hair loss demons. After all, not everyone loses all their hair on ABVD (though most do). Maybe I'd be one of the lucky ones. Well, what happened with Icarus flew too close to the sun? He got burned. And as did I, dear readers. Just two days after that infusion, on a Saturday, I started to notice more and more hair coming out. Well, maybe i'm just going to shed a little. Maybe it will hardly be noticeable, I hoped. By Monday, it was obvious that this wasn't anything close to normal amounts of shedding. It started after my shower where I brushed out enough hair to make a very generous toupee. Unfortunately, it was all down hill from there: from the time I arrived at work to when I left in the afternoon, I literally shed another half of a head of hair. It didn't help that I naively wore a beige cardigan that day, which generously showed EVERY strand of dark hair that fell out. Long story short, I went to the salon and did go through with a Claire Underwood, though it's shorter and thinner than her luscious locks. I've been able to get by the last week and half with that 'do coupled with a headband to hide the worst of my budding bald head, but I'm not sure if my remaining locks have much time left in this world, so I decided to splurge and get a really nice wig. Believe it or not, this paragraph is just the tip of the iceberg of my thoughts of chemo-induced hair loss. There is more I'd like to share on this topic, so I am planning a separate blog post that will be up shortly. Lucky you!
As you can see, this was a big improvement from last time. However, there is one other thing that I'm a little nervous about, in addition to the potential lung issues associated with the Neulasta and Bleomycin. Remember way back in the beginning when I was just a young, bright-eyed pup who got a biopsy of her large superclavicular lymph node and hoped it was something random like Cat Scratch Fever? Well, needless to say we all know how that ended. Though after my scar began to heal and I no longer had pain at any sudden neck movements, I sort of forgot about the whole thing. Well, for whatever reason, my neurotic brain decided to start palpating the area last week, since it's no longer tender and I was just a little curious as to how it felt. To my horror, it felt like there was still a lump there -- or, more sinister, a lump that grew back.
To calm myself down, I reasoned it was most likely just scar tissue. After all, The Slice was pretty intense, and while it's no longer tender, it's still red and still healing. Still, it was hard to shake that feeling of what if the lump is growing back?? According to other Hodgkins patients who have multiple palpable lymph nodes on the neck, collarbone, or under their arm pits, they were actually feel the lymph nodes shrink down with each round of chemo. What an amazing feeling that must be! In my case, however, the supraclavicular lymph node was all I could feel from the start. I also have another small lymph node closer to my thyroid, which I've never been able to feel, as well as a big 5 cm one in my chest, behind my skeleton, which also means that was beyond my ability to feel it. So, I've had to just hope that things are shrinking, rather than have the luxury of being able to feel them shrinking with my own hands. For someone with control freak tendencies, especially as it relates to health issue, this has been very unnerving.
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| Not being able to physically feel the lumps go down is torture. |
I brought this concern up at my last appointment two days ago, and unfortunately I didn't get the reassurance I craved. Dr. Peterson was on vacation, so I saw a Nurse Practitioner. While she was great and was super knowledgeable, she was not as familiar with my case as Dr. Peterson. She did look at my post-biopsy scans and thought she did still see some continuing activity in my superclavicular area, which would indicate that my surgeon did not fully remove the entire node which means that might be what I'm feeling, but she couldn't be fully certain without taking more time to really analyze the results. She then felt it herself and couldn't give me a concrete answer, though she though it was more likely it was scar tissue. What makes it also hard to tell just from touch alone is the location, right above the collarbone, where there are a ton of muscles, which can also feel similar to lymph nodes. Of course, if it's not 100% certainty I'm still going to worry. Unfortunately that's just how this ole noggin operates.
So, on that happy note, I'll leave you with a few important upcoming dates that I'm "looking forward to":
- Thursday, October 16 is my next chemo infusion (4/12 aka 1/3 of the way done!). Hopefully this will go as well as last time!
- Tuesday, October 28 is an especially important date, as this is when I will be getting an interim PET/CT scan to see if the chemo is doing its job and killing The Hodge. The best case scenario is that the scan will come back completely negative, which is fairly common (I can't find the exact statistics, but they're pretty good). Even if this is the case, I will likely still continue with the next 4 cycles (8 treatments) of ABVD as a sort of insurance that ever last cancer cell has been obliterated. What would be a less great scenario, but would still be okay news, would be if there was a significant shrinkage in all malignant nodes, even if there is still a little bit of hodgy activity going on. The worst case scenario would be if there was no reduction -- or, even worse -- an increase in activity. If that is the case I will likely have to switch to a more intense chemo regimen, which would open up a whole new can of worms. If you haven't noticed I'm kind of a perfectionist when it comes to, you know, killing cancer, so the moral of the story is that I'm really hoping for a clean scan.
- Thursday, October 30 (the day before my beloved Halloween) is my return visit with Dr. Peterson, where I will hopefully get my scan results. Oh, yeah, and I also have chemo #5. Whoo hoo!
As always, I want to say a HUGE thank you to all of you who have reached out, sent cards and gifts, and have generally just been fantastic human beings throughout this whole journey. I want to specifically give a shout out to both my family and the Meslow family, who have been beyond amazing this whole time. I suppose an even more specific shout out is in order for my boyfriend Scott, who has moved from NYC back to Minnesota to be with me during treatment. What a mensch!
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