Looking forward

RIP eyelashes, you are sorely missed.
RIP eyelashes, you are sorely missed.

I looked at the results earlier this week from my routine blood draw, and for the first time, it showed a red flag instead of a check mark. The change alarmed me, as I stared at the ominous graphic of a down-facing arrow, signifying a drop of some sort. The description stated that I am anemic. As someone who has never failed a test, I was disheartened to see I had failed this one, after having a perfect score thus far throughout my chemo treatments. It was also an odd feeling, realizing that I am not in control of what is happening to my body right now. And things are most definitely happening. I suppose this should be reassuring, but there’s also something upsetting about it. I found the staff oncologist and asked her if the drop in my levels was anything to be concerned over. She explained that my numbers were still fine, and to be expected, for someone undergoing chemotherapy. The regular range only applies to regular people.

I am growing tired of the whole chemo routine and having all these bizarre things happen to my body.Β  I have about half an eyebrow on both sides and a significant portion of my once lusciously long eyelashes have fallen out. I was reading today that for many women, it takes a very long time for their lashes to come back, and often when they do, they are not as long as they once were. Something so silly, yet it made me feel quite sad. I have a few “things” and my lashes are (were) one of them. I often get compliments on them or people asking me if they’re real (they are….were). It can be rough to think of some of the long-term side effects from the chemotherapy, or the ones that will linger for some time. It is also somewhat of a heavy feeling, to think of the treatments and long road I still have to walk after chemo is complete. Despite what future post-chemo blood results might show, I know I will never quite be a “regular” person again. But let’s be honest, I never really was.

So in order to not get completely depressed, I’ve decided to make a list of some of the things I am looking forward to after chemo is over. Because there are things, and I need to remember them, especially when all that is going through my head right now is the fact that in a few days, I will once again be in a massive amount of pain and threatening to jump out windows.

Here is what I am looking forward to:

Eating sushi… the real kind
Not being afraid that every person who coughs or sneezes is going to kill me
Grocery shopping without passing out in the cereal aisle
Spring and the end of a miserable winter
Going for long walks
Not feeling like I am walking on hot coals
Hair regrowth, hopefully in the right places
Not having people stare at me with a does she have cancer or is she just some artsy girl wearing a scarf on her head look
Eating a real caesar salad
Having my skin return to normal and losing the not-so-sexy red patches that have taken up residence on my cheeks
Gaining my energy back (this one can take months, or years, but even a small increase will be something to celebrate)
Writing bitchy comments on people’s facebook statuses such as “I just endured four grueling months of chemo, but I do really sympathize with your seasonal cold that lasted three days.” (I will never actually have the nerve to do that, but I think about it all. the. time.)
Not having a perma-runny nose
Tastebuds that work properly
Not basing my entire life around my chemo schedule
Planning the most needed vacation ever in the history of vacations, even though I still can’t take one for some time
Being able to say I’m 28 years old and survived chemotherapy. And I’m still standing.

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Living in the moment. For now.

Me, without a care in the world. Ah, to be young again...
Me, without a care in the world. Ah, to be young again…

For as long as I can remember, I have been an obsessive planner. I love to make plans, to organize, to prepare. And I’m quite good at it, too. Long-term goals, schedules. These are things I like. A fly-by-the-seat-of-your-pants girl, I am not.

With my cancer diagnosis, a lot of things came crashing down around me, and one of them was my ability to plan for the future. You might say that for everyone, cancer or no cancer, life is unpredictable and full of uncertainties. And you would be correct. None of us knows what the future holds, or what tomorrow holds, for that matter. However, in my case, things are a bit more unpredictable than they might be for the average 28 year-old. Or at least, I am more familiar with the fragility of life and forced to confront it in a way most young people do not have to.

Before, there were plans. Plans for family, houses, jobs, vacations. Regular things that regular people hope for and work toward and often take for granted. I was headed down a particular path, and things were going quite swimmingly. I had a very bright future, one which I took as a given. And why wouldn’t I? I was young, healthy, and had a lot going for me. I even remember thinking to myself, Life is going so well, I hope nothing bad happens. And then something bad happened. And I stopped making plans and thinking about the future, for the first time in my life. As someone who is not so great at the whole live-in-the-moment thing, I was suddenly thrust into that mode of thinking, without much choice.

People say things like when you have your own kids someday or when you’re retired someday and I nod and smile, allowing them to imagine such narratives, but I no longer let myself actually envision those scenarios anymore. I can’t. This doesn’t mean I don’t believe I have a future, or that I don’t wish to have many wonderful years ahead of me. It doesn’t mean I don’t have a positive attitude, or that I’ve given up. It means I have cancer. And it’s scary shit. And it’s unbelievably, excruciatingly difficult to acknowledge that there is the possibility that my plans for the future will be cut short. So for me, at this moment, it is just easier not to think about it at all. I can think about today and I can think about next week. I can plan for my treatments and organize my medical schedule for the next several months. That, I can do. But anything beyond that, I can’t plan for right now. I can’t see it. I hope that at some point, I will be a planner again. That I will allow myself to dream of all the things I used to and view them as real possibilities, within my grasp.

I don’t know what next year will hold for me. Or the year after that. I won’t be making any plans just yet.

But I will hope.

At least I haven’t lost my ability to do that.

Happy Valentine’s Day

Are you the person who sent me these sweet strawberries in the mail? You forgot to sign your name, but thank you, mystery person.

I thought I should post something because I’ve ignored several messages this week and don’t want everyone to think I’m dead, seeing as it’s Valentine’s Day and all. So I’m here to let you know I am still alive. I’m not sure if I should regale you with the thrilling details of my week. It was not a pretty one. I don’t think I would wish what I have been going through on my worst enemy. Well, maybe Hitler, if he were still hanging around. But everyone else, I think I would spare. (Sorry for talking about Hitler on Valentine’s Day. I believe that must be some sort of faux pas.)

The agony and pain I have felt since the weekend has been nothing short of nightmarish. I had read many horror stories about the drug I was given prior to my treatment, and knew of the possible effects, but I believed maybe I would be spared. I had to, or else I wouldn’t have let them hook me up to the poison so willingly. A lot of people believe that as long as you think positive thoughts, good things will happen, and you can get through anything. But sadly, here I am, the Valentine’s Grinch, to tell you that chemo doesn’t give a poop about warm, fuzzy, happy thoughts. It doesn’t care if you’ve had a horrendous six months of terrible crap thrown your way and really need a vacation. It will kick you on your ass until your jaw throbs, your muscles seize, your taste-buds disappear, your bones spasm, your heads spins and your nose bleeds.Β  It’s one sick, ugly bastard.

I threatened to give up again this week. I said I wouldn’t do anymore treatments. This makes me feel like I have an ounce of control over what is happening to me, even though I know I really do not. Right now, the idea of putting myself through this again in two weeks seems like something only a severely mentally unstable person would entertain. I can currently sit up and walk through my apartment without screaming and crying, which is a marked improvement over a day ago. The fact that I’m typing right now seems like some sort of miracle, actually. Hopefully this means I am on the mend and will have an almost complete recovery by the next round. Because I need enough days to go by that I can wipe this week from my memory in order to do it all over again. And if that doesn’t work, I need one of you to hit me over the head and knock me unconscious and hook me up to the drugs yourself. Just remember to wake me up when it’s over, or that kind of defeats the whole purpose.

So it’s Valentine’s Day. The day of love. Valentine’s Day itself makes me a tiny bit queasy, but a lot of it is about chocolate, so for that reason, I can get behind it. And I suppose it’s also about love, and I am happy to say that I experienced a lot of that this week. From my dad’s cookies, my mom’s back-rubs, my brother’s drug stash, my sister’s hugs. My poor family had to sit by and watch as I cried out in pain and threatened to jump out the window, which I imagine must have been quite upsetting. And of course, my #1 Valentine, my husband, who sits with me in bed at night while I cry and says It will all be over soon. This is love. This is what matters. Giving chocolates and roses and expensive things is very, very easy. But this kind of love is the hard kind. And it doesn’t come often. And if you are fortunate enough to have it, you should thank your lucky stars. I do. I am the luckiest unlucky girl in the world.

❀

Side effects may include the following

I’m tired.

This week has been a long one. On Tuesday, I was at the hospital almost the entire day, dealing with various appointments and consultations, and an unfortunate mix-up with my blood. I had to hear more things about my “prognosis being slightly worse” because of my age and “greater chances of it coming back” because of X, Y, and Z, and blah blah blah, and again process the idea of more treatment, which is starting to feel never-ending. It is difficult not to get upset after these types of conversations. My typical routine is to get through it, keep myself composed, ask all the right questions, and then go home and scream and cry and shout “I don’t want to dieeeeeee!” and hyperventilate for a minute or two. Then after exhausting myself, I usually put some crap on the TV like The Bachelor (my saving grace as of late) and distract myself until the next wave of panic hits for one reason or another.

Needless to say, it is exhausting. I keep telling people that I am bored. But it’s not the bored you are thinking of, where I have nothing to do. In fact, I often feel like I have too much to do and not enough time. It is more a case of an overall boredom with cancer. I am bored of dealing with it, talking about it, stressing about it. Bored. I want to be focused on something else. I would rather be complaining about the cold that many people on my Facebook seem to have. I would rather be staring at a wall, watching paint dry, or scratching my fingernails across a chalkboard. Essentially, I would rather be doing almost anything. That is where I’m at.

I have been experiencing some bad pains in my back the past couple days. For the average person, back pain would be of little concern. But anyone who has or had cancer can tell you that any new type of pain can be a cause for alarm. It is nearly impossible not to quickly jump to the conclusion that bad pain means the cancer has spread. I wish my brain did not go there, to such a dark place. I wish I could brush off pain the way other people are lucky enough to be able to do. But I can’t. Will I ever be able to? I’m not sure. But for right now, I am really hoping the pain gets better, because I don’t need a new worry to add to the list. The list is getting awfully long, my friends.

Tomorrow I go for my next chemo, which involves a new regimen. The infusions will take a total of 5 hours. With the typical wait times, I will likely be in the hospital all day. Please feel free to suggest fun things to do while sitting in a chemo chair for 5 hours.

The new chemo involves a drug which is typically known as one of the more horrendous chemo drugs one can receive. Fun possible side effects include neuropathy, debilitating mouth sores, terrible body pains and aches, loss of nails, and extreme fatigue, among others. As my oncologist said, I don’t think you’re going to like it too much. I should mention that over the next few days, or possibly week, I likely won’t be too great at responding to any emails or messages. Know that if I don’t answer you, I am most likely lying under my covers in the dark listening to some sort of “Songs for sad emo wussies” playlist on Songza.

I will also be starting my first round of the drug that will hopefully have a life-saving effect on me. And in addition, I start my clinical trial drug, where I will either be receiving a real drug, or a placebo. I will not know. Please cross your fingers for me that I receive the real deal. My chemo drug also has a tendency to cause severe allergic reactions, which is why I am currently hopped up on steroids and will be for the next couple days. So please cross your fingers as well that I don’t have a severe reaction when they start the drug. In fact, cross your toes too, if you have the ability to do that. Lots of happy thoughts tomorrow, if you can spare some.

On a slightly cheerier note, this week was a really great one in the I’m-a-cancer-patient-so-I-get-lots-of-gifts arena. I received a handmade tshirt from an old schoolmate (and former prom queen, hollaaa!) who now lives in New Zealand. She somehow created a stencil of me wearing a scarf and incorporated a cupcake theme and painted it on, and the whole thing was beyond impressive to me. I wore it to the hospital yesterday, proudly. I also got another package from the The Canary Islands (yes, many of my friends live in weird, exotic locales) which included a super soft sleep mask that I will likely bring with me tomorrow in hopes that it induces a nice chemo coma. And I got some more pretty nail polishes from my new pen pal, who volunteers to send me things through an organization, out of the goodness of her kind heart. On the food side, I have some soup, mashed potatoes, cookies and more goodies waiting for me. You all have no idea how much these things brighten my day. Well, hopefully you do. Because I just told you.

That’s all I wish to share for right now. Think of me tomorrow, with my hands and feet submerged in buckets of ice (something I have to do to try to prevent finger and feet problems). Hopefully that creates an interesting picture for you.

See you on the other side.

Today.

Huffington, hairs, and hearts, oh my

Thanks for all the love from my last post. Sometimes before I click the “publish” button, I start to doubt myself and worry that I might come off sounding a bit too angry or a bit too sarcastic that day. And then, ultimately, a voice that says who gives a s— gets in my head, and I click the button and hope for the best. Turns out people tend to react quite positively when I am at my most blunt and honest. So I thank you for that, and consequently, I will try to not doubt myself in those moments where I am feeling particularly truthful.

Here is a summary of my past week, for those who are interested in that kind of thing.

  • Hung out with some nice lady friends where we talked non-cancer things and ate delicious pizza, the remainder of which I ate the next morning for breakfast (Judge me at your own risk.)
  • Blasted songs from The Lion King with my sister and then danced around to some P!nk song. Both bizarre choices, yet very therapeutic nonetheless
  • Had a nice visit with a friend from out of town and discovered we both have the same belief that cats are evil and trying to kill us
  • Watched Silver Linings Playbook. Two thumbs up
  • Got completely sucked into the American Idol auditions and all of the I’m an orphan with three children and I have cancer and lost my leg and my dog is blind and I’m deaf but I’m still singing anyway type of stories. I love it. I can’t help it
  • Started losing my eyebrow hairs and some lashes, although most are being stubborn and hanging in there for now, so I give them an A for effort
  • Realized showering when you’re bald is much easier than showering when you’re not bald. So that’s something
  • Got some back/spinal bone pain which is an unfortunate side effect of an injection I receive to give my white blood cells a boost. Nothing ventured, nothing gained
  • Had another heart echo test where I got to hear my heart beat very loudly, which I think had a pretty solid horror movie beat to it, if anyone needs me for any sound effects in the future
  • Was invited to publish my blogs on the Huffington Post, the first of which appeared a couple days ago, enabling thousands more people to suggest magical cures for my cancer
  • Had two doctor’s appointments which I had hoped would be helpful, but left me feeling more frustrated and stressed than I had been in a while
  • Got home after appointment #2 and sobbed and had a pity party of one and maybe punched a thing or two (No humans were harmed.)
  • Received this handmade card from a very kind person who doesn’t even know me. Turns out it was just the reminder I needed: