Monday, November 17, 2014

Chemo #6 aka HALF WAY DONE!! Oh, and another ER visit...

I am happy to report that I am officially half way done with my treatment for Hodgkin's lymphoma! This means I have completed 3 cycles (6 actual infusions), and have 3 more cycles to go. If all goes according to plan and I do not any unforeseen delays, my last chemo infusion should be on February 5, 2015. Given that I've already braved dangerously low blood counts (pre Neulasta, of course) AND a blood clot in my lung and have still managed to stay on schedule, I can't imagine what else will slow me down at this point (knock on wood).



So, between my clean PET scan and making it to the halfway point, things have been going pretty well...except for another ER visit I had last week for a fever. It started the night before, when I had a mixture of night sweats and severe chills. However, since my temperature was fairly normal when I woke up, I shrugged it off as the changing seasons and too much cocooning under my warm covers and went to work.

Big mistake.

Almost immediately, the chills came back. Normally, I am always layered up at work, whether it be with sweaters, scarves, or both, but for whatever reason that day I had zero foresight and was only wearing a thin dress (the seasons were in whack, after all!). Needless to say, it was not one of my most "productive days", and I ended up clocking out about an hour early because I could tell I was getting worse.

The first thing I did when I got home was take my temperature. Unfortunately, I have the world's most finicky thermometer, which requires at least 3 different readings, all averaged, to get an accurate result. I normally run a little on the low end -- my temperature is usually around 97 degrees or so -- so I knew I was in for a treat when the first reading was around 99. Unfortunately, it kept on climbing to eventually get into the 101.5 range.

Being the good little chemotherapy patient I am, I knew this was cause for concern. My doctors had been very clear that if my temperature is above 100.5, I would need to head over to the ER because that is often a sign of an infection, or "neutropenic fever", as oncologists call it, and with a weak immune system, a small infection can quickly escalate. Up until this point I hadn't been too concerned with this since I am on Neulasta, which means I still have a decent immune system (though I still am anal enough that I check my temperature every night before bed. Like I said, I'm a good little chemotherapy patient!).

By this point, the sweats replaced the chills, which, in my opinion, are even worse. So, with a heavy heart I conceded that there maybe was something wrong and I might as well face the music. And with that, my mom, dad, and I headed out to ER 2.0. After all, there's nothing better than a weekly family bonding session in the ER!

By about 9 pm -- after an examination, chest x-ray, complete blood count, urinalysis, a bacterial culture on my blood, and EKG (I wasn't sure if my "chest pains" were an infection or anxiety -- turns out they were the Big A) -- we still didn't really know what was going on. Then, things got even more interesting when the ER doctor came in all flustered and informed us that my WBC was through the roof -- 21,000 to be exact (normal ranges are between 4,500 and 10,000) -- and that I either had some crazy infection looming beneath the surface or my counts were elevated as a side effect of Neulasta. Since he does not specialize in cancer treatment, he didn't feel comfortable making the call, which meant he had to connect with the oncologist on call at the U of MN for the final verdict.

Close to two hours later -- around 11 pm or so -- we finally got it: DISCHARGED. He still seemed a little skeptical about discharging me -- "You know, if you'd feel more comfortable we can totally admit you as a precaution." Part of the reason he said this is because the results of the bacterial cultures of my blood could take up to 48 hours,  so if we wanted to be on the extra safe side I could start some IV antibiotics. What I also I think was going on, though, was that he was still trying to work his brain around the Neulasta. This is not to say that he was not an incredibly competent doctor, but it just goes to show that DOCTORS ARE PEOPLE TOO and each have their own area of specialization. By nature of working in an ER, this doctor generally sees patients with severe external injuries or other more routine conditions (pretty much anything is more routine than Hodgkins, in which the average person only has a 0.2 percent chance of developing in his or her lifetime). It seemed to go against all of his instincts to discharge me with such a funky blood count, but luckily he did, since it is one of my goals to NEVER spend a night in the hospital.

Go figure, by the time I got home I was feeling much better, and I even had a sweat-free night!

All of my tests came back normal -- even the bacterial blood culture -- so I guess we'll never know what caused this random spike in my temperature. As with the phantom blood clot that refuses to be detected, my body operates in mysterious ways. While I am always of the camp "it's better to be safe than sorry", I am getting very sick of ER visits, so I'm hoping things calm down a bit. I know I said that last time, but this time I really mean it!

A few other updates:

  • I had my second pulmonary function test to make sure that the bleomycin (the 'B' in ABVD) + Nuleusta wasn't causing too much havoc on my lungs. If you remember, I really didn't like this test. I am happy to report that the second time went much smoother. The doctor I had was much clearer with the expectations of each test, so instead of doing 20 different tries to get an accurate result, it only took about 2-3 tries. Naturally, I thought this meant that my lungs were even better -- hey, I had been working out! -- however, that was not the case. While they're still within the normal range, they aren't as strong as they were before chemo. Whether or not this is permanent is still TBD, but at this point we will still be chugging along full speed, Bleomycin and all (some people drop the Bleomycin if they have more significant lung damage, which apparently doesn't really impact the efficacy of their treatment. Hmmm).
  • I finally got the dreaded Nuleusta bone pain everyone talks about, which happened to coincide with my fever, making it extra pleasant. Many people get the most pain in their hips -- I had a little bit there -- but mine was mainly in my spine. SPINE PAIN! Weird, huh? I can't really explain it except that my spine REALLY hurt, especially with any movement. Luckily, this only lasted about a day. Apparently, taking a Claritin before administering the injection can help with this. Unfortunately I forgot about this little detail before yesterday's injection, so I'm hoping last time was just a fluke and that I'll make it through this cycle free of spine pain.
  • Speaking of injections, have I mentioned that I really hate this twice a day Lovenox routine? Just as I felt like I was finally getting used to it (still not administering myself, but not totally freaking out when either my mom, dad, or Scott jabbed it into my stomach) I discovered a new surprise. LUMPS under the injection site. Once you're diagnosed with cancer ANY sort of lump will immediately spike your blood pressure, so I called my care team right away. They said this is nothing to worry about and that it can happen with injections. Apparently, these lumps (I have four so far), are just a collection of scar tissue that will go away in a few months. Needless to say I am rapidly running out of stomach space to inject these assholes. Still, I guess it's worth it not to get another blood clot. But just barely.
So there you have it. I'm getting close to the finish line, but I still have a ways to go. As always, thank you for all your love and support!

Monday, November 3, 2014

Yay PET scan! Boo Lovenox!

Between last week's PET/CT scan, the pulmonary embolism, and my new twice a day jab of Lovenox, it had been quite the week. Thankfully, things seem to be slowing down a bit, and aside from some very grotesque bruising on my stomach where the Lovenox blood thinning shots are administered, I'm feeling pretty good.

As I mentioned earlier, I had a follow up appointment with my oncologist, Dr. Peterson, to go over my PET/CT scan in more detail, as well as to talk more about the implications of my blood clot. The good news is that my PET scan came back negative, which means there are no detectable cancer cells in my body! This does not necessarily mean I'm cancer free (yet). There still could be some stragglers hodging about that are too small to be detected, but this is a really good sign and was just the result that my doctors were hoping for. This does not change my treatment plan -- I still have 7 more chemo trips to go -- but this does give a good indication that I should hopefully make a full recovery after this "wonderful" journey of ABVD.

If the PET scan is the barometer to measure the actual cancer, the CT part of the scan examines the tissues and other structures of the body. This is the part of the scan that I wasn't 100% perfect on, but that's okay because it has less to do with my overall prognosis and likelihood of a full recovery. The CT scan showed significant reduction of the tumors and inflammation, but, unfortunately, they're still enlarged from what is normal. Dr. Peterson said that these could take awhile to go all the way down -- or they might never return to their normal size, which is still okay, but it just means it might be harder to monitor in the future if there is any sort of hodgy changes. While I'd like to have had a perfect scan around the board, I am very satisfied and excited about my negative PET scan! Hopefully there will be many more of those to come in the future!

Me, after receiving the news of my negative PET scan!
So, now for the less fun part: the pulmonary embolism caused by a blood clot. Since I had no symptoms and it was only detected from the scan, they called this an "incidental finding". After an ultrasound of my legs -- as this was most likely source of the clot -- came back without detecting a noticeable clot, everyone's just kind of shrugged their shoulders about this phantom clot. Maybe it's in my arms? A smaller vein in my leg the ultrasound may have missed? Either way, my doctors do not see this being a long term issue -- it will probably clear on its own in a few months. However, they do want to be proactive to make sure I don't develop another one. This is where the Lovenox comes in. Every day, twelve hours spaced apart, I need to shoot up with this crap. Thankfully, this whole cancer process has taught me to suck it up in a lot of ways -- I am not really bothered getting pricked and jabbed by medical professionals and will pretty much hand over my body to anyone with scrubs in the name of Fighting Cancer.

However, I do have a problem when it comes to pricking/jabbing myself. Luckily, my mom has been administering these for me the past few days, but I do know that I have to start taking over soon if I want to have any semblance of a social life -- ahh, the days before Lovenox where I could just make plans after work! 

If it was just a question of jabbing them into my stomach, maybe I could do them and not get totally grossed out. The problem is these little assholes leave MASSIVE bruises (do not click that link if you're squeamish) and you're really only supposed to shoot up in the lower stomach underneath the bellybutton, as that's where the best 'fat' is. Apparently, if you inject them in the fat and not the muscle, you shouldn't have any bruising. WRONG! I by no means have a six pack -- which means that this medicine should go in nicely, painlessly, and without bruising -- but after 5 days I am unhappy to report that is not the case. I'm reading up on some other tips to minimize the bruising, such as icing before and after, and applying more pressure to the spot of injection, but so far nothing has worked.

So, hands down this has been the worst side effect of chemo. I'm almost half way done with treatment, and up until this point, I really didn't feel that much different. Sure, I would get a little bit more tired than usual and would have a few days where I felt pretty crappy, but my day to day life wasn't drastically impacted. There's something about an injection happening twice a day that is really draining. At least with the bi-weekly Neulasta shot, which stimulates the bone marrow to grow more white blood cells, I knew that once it was done with, I had another two weeks before I even had to think of it again. With the Lovenox, it feels like I'm never really done. T-minus 8 hours! 4 hours! 2 hours! Sigh! It already feels like a never-ending cycle and it hasn't even been a week.

So, while I have to be on this for six months, the good news is that I only have to do the shots throughout the duration of chemo (another 3 months or so). Then I can start taking pills instead. The reason they do it this way is because the pills take a few days to enter your system -- and likewise take a few days to exit -- so if, say, I had to have an emergency surgery for something hodge-related, having really thin blood would complicate things. I'm going to give myself another week to see if my body starts having a better reaction to these things. If not, I may try to push for the pills instead, as I don't really see why I would have any emergency surgeries in the near future, especially following my negative PET scan.

Here are a few other updates:
  • Chemo: After meeting with Dr. Peterson last Thursday, October 30, I had chemo #5. Minus a little vein bruising afterwards -- due to my nemesis Lovenox -- it went very well. The next time I'm in the infusion chair on Nov. 13th will be for chemo #6, which will represent my half way point! 
  • Lung issues: While this seems kind of counter-intuitive, my blood clot in my lung is unrelated to any sort of chemo-induced lung damage that may come with the Bleomycin or Neulasta. If you remember to the early days of this whole saga, I had to take a pulmonary function test to make sure my lungs were strong enough to withstand 12 rounds of Bleomycin (the 'B' in ABVD) and Neulasta, both of which can cause some nasty lung damage if your lungs aren't in good shape to begin with. So far, I don't notice any lung damage -- I get a little more winded power-walking up hill than I used to, but after mentioning this to my doctor, he assumes it is just because my body is weaker in general. Still, I have another pulmonary function test to look forward to on Nov. 12 just to make sure things are still going smoothly. 
  • Veins: So far, so good on the vein front! Following chemo #5 I have not had any vein pain or issues. The very irritated vein I got after chemo #2 is still pretty bruised, which I was told may take months to go down, but thankfully the rest of my veins seem to be holding out. Since I'm almost halfway done with treatment, I think I've officially stopped my on-and-off again flirtation with the port.
  • Vain things: 
    • Hair: Believe it or not, I need a haircut! Before you get too excited, this does not mean I suddenly have a ton of hair to work with -- I wish -- but it seems that I've plateaued in the hair loss department (at least for now). Unfortunately, though, most of the loss has occurred on the top of my head, so I'm still confined to my wigs and hats for the time being, but the hair around my crown is still growing, so I guess that's good news, right? What I'm even more excited to report is that I still have eyebrows and eyelashes. The optimist in me is thinking, hey, I've made it this far. If they're going to fall out, they would have fallen out! But again, ABVD effects people differently, so I guess I should be open to the possibility that one day I will wake up looking a little freaky. 
    • Weight: Ah, every woman's favorite topic! Many people envision the average cancer patient as emaciated -- or at least much thinner than before he or she got sick. Well, that is simply not true, and it really depends on a variety of factors -- most especially, what type of cancer you're being treated for and what combination of chemo drugs. Most people who go through ABVD for Hodgkin's -- at least that I have come across in the blogging/message board universe -- seem to gain weight from the chemo. The reason for this seems to be due to fatigue (ie. the body isn't moving as much because it's tired), steroids (hello, water retention!)  and a less healthy diet (hey, if you're not feeling that great, you're going to go for the comforting mac and cheese, rather than some lean protein and veggies. Doctors even tell you this is okay!). Thankfully, I have stayed about the same weight these last few months, most likely to continuing to eat a healthy diet and trying to get as much exercise as possible, which has mainly been power walking and yoga. Now that it's getting colder and the days are getting shorter, I am really going to force myself to keep trying to stay active. Not only is this good for my body, it really makes me feel better mentally as well. Unless I'm watching something really good on Netflix, I am not a very good couch potato. 
    • Fashion: What does fashion have to do with cancer? Aside from headwear, not much. Oh yeah, that is if you are lucky enough to escape the horrors of Lovenox, which I've so kindly and meticulously detailed for you above. Since my lower stomach is completely bruised, I have unfortunately had to institute a moratorium on pants or jeans of any kind, unless they're super low rise. Oh wait, that was (unfortunately) a thing in my preteen days and shall never came back as long as I have dignity and an understanding as to how to dress my body. So, for the near future, it's all about the dresses, leggings and tights, Jessica Day-style:
    • After all, who has time to wear pants when you're so busy being quirky, adorkable, and fighting cancer?

That's about it, folks! Thanks for all your support and positive energy -- it is always appreciated, and it was even more so this last week! Here's to hoping that this week is less crazy than the last one!