Friday, January 18, 2013

Closing the Chapter of the Hellish Year of 2012


Hi.  So, it’s been a couple of months since I last wrote (SSSHHHH….don’t say the actual number of months out loud…you’ll make my blog mad).  Who knew how fast time flies when you’re going to a hospital every week.  I don’t think that was in their “Welcome to Chemotherapy” pamphlet, but they should definitely think about throwing that into their FAQ section.

With that not-so-subtle segue, gentle reader(s? Yeah, no.  I think I’m down to just me and the internet crickets that chirp on neglected blogs), let’s wrap up the health saga that is known in my house as the Hellish Year of 2012.  After going every week to have my blood checked, starting birth control again to see if it was a pituitary gland thing and then having good weeks (I got down to 8!  8, people-sorry-person! It’s a pituitary gland thing!  Huzzah!) and then bad weeks (I went back up to 15…and then 18…and then 19….what happened to you, 8??  You were such a nice number!  I guess you are not a pituitary gland thing!), avoiding the doctor for a month because I wanted 8 to magically reappear (hope can be tricky sometimes, in the sense that it tricks you into prolonging the inevitable), I finally gave in and accepted my fate. 

I received my first chemotherapy shot of dactinomycin, which is a stronger chemo drug compared to the methotrexate I received in January and April, on November 22nd.  Incidentally, I rushed to York University right after so that I could teach my second to last class of Consumer Behavior.  It was an awesome day, to say the least.  I received injections every two weeks after that, and just received my hopefully last injection last Monday.  In total, I received four injections of the stuff, but happily (really, this is a BIG happy), my numbers have been <1 since two weeks into this experience, and have stayed there since.  Unless my numbers rise in the next six months or so, I should be in the clear.  The second big happy is that I only have to go once every month to get my blood checked, which is a huge relief considering that I have gone to a hospital every week for probably 46 out of the 52 weeks in 2012.  I only wish this was an exaggeration.  So, as of today, it looks like the Hellish Year of 2012 is not going to be spilling over into 2013.  I am afraid to be optimistic at this point, but in the deepest part of my heart, I really hope that this whole “learning” and “growing” experience has run its course and that I can close this chapter of my life…and while I’m at it (just to be thorough, of course), metaphorically rip it into itty bitty pieces, burn said itty bitty pieces aided by a whole bottle of lighter fluid, and bury the ashes from the itty bitty pieces in the deepest, darkest hole I can possibly dig.  J 

With all that said, and this is more for me than for updating people…person…*ahem* crickets… on how I’m doing, I’m going to talk about what it’s been like being on the chemotherapy, just so that I don’t forget the details of the experience as I move emotionally past this.  And since this is a blog, you can read it, too, if you so desire, and learn things that you hopefully will never experience in your own life from what I had to learn.  My only disclaimer is that while you read this, please note that I fully recognize that the chemotherapy I received was a relatively small dosage compared to what you normally go through for cancer, and so my experience is nowhere near as trying as those strong, brave men and women who have those types of chemo experiences.  However, it is my experience and is important to me, so here we go.

     #1. Chemotherapy sucks.  It sucks whatever energy you have, your time, your appetite for food/life, and so on.  It just sucks.  Plain and simple.  I was really scared with Injection #1, because I didn’t know what to expect in terms of side effects and I was worried that it wouldn’t work.  What I found out is that chemotherapy (and more so the side effects) are physically and emotionally draining, but that you can do it.  As long as you know that it is just going to suck for a while, you can accept it and move on. 

     #2. Side effects are not peripheral or on the side, regardless of being called side effects.  They are front and center.  I felt physically sicker than I have the entire year while I have been dealing with my disease (gestational trophoblastic disease is what it is called) following each treatment.  Here’s how it went down.  After each chemo injections, I would have about 8 hours until the side effects kicked in, and I dreaded that moment of when I started to feel queasy.   I was on two different types of anti-nausea meds and steroids (to keep infections down??), and I don’t even want to think about how I would have felt without the meds.  Thankfully, I didn’t throw up, but I also didn’t eat anything stronger than toast or mashed potatoes for about four days straight, and I wouldn’t eat a normalish meal until about a week after each injection.  And then I would overeat to compensate for not eating normally and to celebrate food being appealing again, so I really didn’t lose any weight overall (yeah, that was a bummer).  For the first four days after each injection, I really didn’t do anything other than sleep, drink copious amounts of water and Gatorade, and watch whatever I could watch on TV that I could sleep to.  Chemo also messes with your digestive system, and that’s all I will say about that.  I would slowly work up to going outside, to the library, grocery shopping, picking up the Mister, and so on…but once again, it took about a week until I felt more like “me” again.  Even with that said, my energy would only really return a couple of days before the next injection.  So – really.  Chemotherapy sucks everything out of you.  I lost December (except for one extremely happy week when my mother came to visit) to the effects of chemo.  I can’t get that time back.  I also missed my bed – I slept on the couch so as to not feel sicker by being jostled when my Mister moved during the night.  While I love my couch, I do love my bed more! 

      #3.Losing your hair while on chemo is no laughing matter.  I knew that there was a chance I would experience some hair loss with the chemotherapy, but oh my laws.  I was not prepared for the ickiness and sadness of it.  First off, it’s gross.  I can’t run my fingers through my hair without multiple strands falling out, and for someone with long hair, I do have to flip my hair over my shoulder or put it in a ponytail or get knots out throughout the day, which leads to little piles of hair accumulating where I’ve been. And showering?  Oh heavens.  I won’t even go into how many times I clean our drain a week from the amount of hair that gets caught.  ICKY.  The hair loss wasn’t bad with the first injection, but it definitely kicked into gear by #2 and hasn’t slowed down since.  I’m told that the hair loss will stop once I’m done receiving treatments (hello, universe!  I’m done!  Can my hair please stop falling out now?? K, thanks!).  I haven’t gone bald, but for a person who always had fine hair without a lot of volume, it makes me incredibly sad to look at myself in the mirror and see the limpness that is now my head of hair.  I’ve tried using baby shampoo, which really hasn’t seemed to reverse the depressing trend, and I’m only washing my hair once every two days so that I’m not as hard on the hair that is left, which, ugggh.  You just don’t feel as clean coming out of the shower if you haven’t washed the hair!  I also went probably 95% of the time just not doing my hair at all (which, if you know me, I do not do.  My hair looks scary without some divine intervention) during this whole experience.  I think this added to me not feeling like me, because I look in the mirror and I didn’t see well-groomed me.  I feel my ponytail now, and I just….it’s hard.  I might go get a haircut once the gross-factor goes down a notch so that it’s not so long and sad, but…yeah.  Bye, hair.  (NOTE: The one upside to losing hair and stuff – shaving my legs was a breeze!)

      #4. Chemotherapy can leave lasting physical effects.  Injection #2 occurred in my right hand, and about three days after, I had a pretty wicked rashy red thing that ultimately turned into three burn spots on my right wrist.  Two of the burn spots are small, but the mother burn spot in the middle peeled and scabbed and itched and hurt until it eventually died down to what it is today: a noticeable, circular red scar about the size of a dime.  Now, I know.  Dime size is not HUGE, but it’s still pretty significant when you have small wrists, and when you had previously unblemished wrist skin.  Apparently what can happen with the chemo injections is that if your veins aren’t big enough or they don’t put enough saline along with the injection, it can “leak” outside of your vein and burn you.  So that’s what happened.  Thankfully my left wrist veins were much more accommodating to chemo injections, so I just have the right wrist burn scars.  Goodie!  I think this is hard for me because it’s a literal, physical reminder of this awful year.  The last chemo nurse I saw told me that it will eventually fade, and by eventually, she clarified as “years.”  My wrist is therefore my badge of chemotherapy that I will wear for years to come.  I’ll be honest here – I wish I didn’t have it or need it.  

      #5. Getting the actual chemotherapy injection is easy peasy.  Waiting to get the chemotherapy injections is evil.  On the day of your chemo treatments, you have to do five things: (1) get your blood drawn and a full CBC thing done, (2) meet with your doc so that he/she okays the chemo treatment for that day, (3) check in with the chemo nurses when they call your name to go over your CBC results and okay your treatment, and (4) wait for about an hour to two hours for the chemo to be mixed and delivered, so that you can then (5) get injected with the poisonous stuff around your appointed chemo time.  Step 5, for me, usually took about 15 minutes total, from being set up with the saline line to being injected to getting the saline afterwards to being released.  Easy peasy.  Step 1 is also easy, if you get there early enough, and all of the blood tech lab people at Sunnybrook know me by now, so at least I get to chat with them while they poke me, and since I’ve been poked once a week for the past year, I’m so over being afraid of needles.  It doesn’t bug me in the least anymore, so Step 1 is an easy check mark.  However, Step 2 is the kicker for making it either a pleasantish or a truly horrible experience.  Case in point:  Injection #2 (same one where I got the wrist burn from – it was a cursed injection, methinks) was going fine with Step 1 being completed right on schedule, if not early.  My doc appointment time was at 9:45, and my check in for chemo was at 10:45.  My doctor got delayed within the first hour BY an hour because he had to do a “procedure”, and as such, I didn’t see him until 11:15.  So I missed my chemo check in time.  By 30 minutes.  It took all of 3 minutes for him to okay my chemo treatment and see that I wasn’t having any serious ill effects from the treatment, so we were out of there by 11:18.  We skeedaddled over to the chemo nurses, and then proceeded to wait an hour to be called by the nurses.  And then after I was okayed, we waited another two hours to be called back for the chemo treatment.  We finally got out of there by 2:55.  We had been there for over 7 hours.  All because of Step #2 being delayed put me at the end of the chemo pack, setting back every other step.  This really was not so fun, because neither the Mister nor I brought food with us, because we thought we’d be in and out in under 3 hours.  HA.  But I will say that getting the actual chemo was no biggie. It just looked like apple juice being injected into my arm.  And I really liked the heating towels they wrap your hand in to get your veins to pop.  They were strangely relaxing.  Maybe I should go to a spa someday?

      #6. Coming down with a cold and getting chemo is no bueno.  Injection #4 was received when I was feeling slightly under the weather with a sniffly nose.  However, I was cleared and received the injection.  When asking the nurse about whether I should be concerned about a sinus infection while getting chemo, she told me that I should go to a doc IMMEDIATELY upon thinking that I was getting a sinus infection, because your immune system is compromised when receiving chemotherapy, and any small infection can be magnified to the point where people get hospitalized.  Scary stuff.  So I went to a local walk-in clinic right after getting Injection #4 and got antibiotics and inhalers, to make sure that my sniffles didn’t transform into the now-much-scarier-possibilities of a sinus infection and ultimately bronchitis.  Even taking the medicine, however, I am still getting over the sniffles and coughing, and it’s been two weeks.  And I’m here to tell you that feeling nauseated, weak, AND sniffly with gung in the lungs is a recipe for one really depressingly sick week.  Upside:  I got to play hooky from church two weeks in a row to take care of my health, and no, I’m not a bad person for enjoying those two weeks.  J

All in all, I’ve tried to stay positive as I’ve tackled each aspect of my chemo experience.  It’s definitely been emotionally easier now that my levels are where they should be.  If this DIDN’T work…oh boy.  That would be…ugly.  For me.  And my doctor.  Because he would hear about the ugly, see the ugly, and get the ugly.  But, thankfully for him, he’s been spared the ugly.  I hope that I never have to have another chemo injection/treatment/poison administration again in my life, but I will say that I’m proud to have gotten through it and been able to laugh about it most days.  Now all I can do is hope that my levels stay down and that 2013 is a heck of a lot better than 2012 ever was.  If you crickets get a spare minute or two, can you hope with me?  I need all the good mojo I can get! Thank you!!!