Lonesome

    I had a big cry today. Nothing in particular set it off, at least nothing that I can think of, it’s just been an accumulation of a lot of emotional stress over the last few days (or maybe weeks). I slept in a lot, and then I was just so overwhelmingly sad that I burst into tears for no reason at all.

  The more I think about it, the more I think it has to do with this sort of isolating quarantine that I’ve had to live in. If you know me at all then you must know that I really like people. I like the people I work with, I like making new friends, I like going out, I like to be social. In fact, I think I really NEED it in order to be happy. Everyone does, to one degree or another, but it just so happens that I’m the kind of person who needs a lot more social interaction to feel fulfilled and joyful. I remember reading somewhere that an introvert feels drained by the company of people, while extroverts feed off of group interaction and are energized by it. I definitely fall into the latter category.

   I’m at a point in my life where circumstance has distanced a lot of my close friends, and then all this sickness and chemotherapy just makes the situation so much worse. Every single day I feel tired and nauseated, and that’s not a good recipe for hanging out or having the energy to feel social. That means I stay at home a lot and hang out with my parents (although I love my parents, I’m not counting that time as “social”), and in return all that time alone depresses me and makes me less energetic. It’s an increasing cycle of loneliness and isolation, but it’s difficult to break because there’s a very real physical illness driving it.

     So what do I do? I guess right now it seems like the only thing I can do is wait it out. My last day of chemo is next Tuesday, and after that I’ll start feeling better little-by-little. Hopefully my cheer will return once I’m feeling well enough to hang out with friends again, and until then I’ll try to find ways to keep myself entertained so I don’t completely give in to feeling miserable.

    Cancer isn’t fun, guys. I don’t recommend it.

Quick Update

     I think I finally feel like I might be getting over the worst of this chemo thing!!!!  I had my last long week of Monday-Friday chemotherapy last week, so this weekend was pretty rough. I spent most of it in bed feeling miserable and nauseated, which is unfortunate because my dad is here visiting and I’d like to be able to do more fun things with him. At least last night we went to go see “We Bought a Zoo”, which was lighthearted and sweet and pretty much the perfect movie to see when you’re feeling crappy and have been cooped up all week at home. I still have to be very careful not to catch any gross illnesses and it seems like everyone is sick right now, so I snuck in my own popcorn and just wore a mask the whole time I was out of the house. It’s funny, because I assumed I would catch more strange looks with my mask on, but I must be getting used to it from the baldness because I didn’t even notice :-)

    Today I had my second-to-last treatment with Bleomycin (it’s usually on Monday but got bumped because of the holidays) which means I only have ONE MORE DAY of chemo next week and then I’m done for good! I’m still feeling pretty exhausted at the moment, but at least we’re getting there!!!!

Inspiration

   Chemotherapy has a way of wearing you down. I’m in my last cycle, which means I have to finish this week and then only do two more Mondays of treatment before I’m done for good. I should be more motivated than ever, now that the end is so near, but this feels more like the doldrums than the home stretch. I’m just tired; tired of getting up early every morning, tired of going to the same curtained room for chemo, tired of being bald, tired of feeling sick, tired of being tired, etc etc. That probably explains why I haven’t been writing as often. Even though things are happening in my life, I just am not motivated to write about them because I’m too worn down to find anything interesting.

    So today after chemo I was in this funky worn-down mood, thinking about how I didn’t have anything interesting to write about, when what do you know, I get a surprise package at my door. I love receiving gifts under any circumstances, but this was especially sweet because it was an extremely thoughtful gift from someone I don’t know very well at all. A kind note and simple gifts turned my mood around a lot, and it made me start thinking about things that I find inspirational.

   I’ve been hearing this word a lot recently, “inspirational”. Apparently many of you out there reading this blog find it (and me) to be inspirational. So I looked it up. Inspiring: having an animating or exalting effect. Wow, that’s pretty powerful. If reading this, or hearing my story, manages to encourage you or raise your spirits, then I am sure that this will be one of the best things to come out of this whole cancer debacle. Here are some things that move me, encourage me, and lift my spirits. These are my sources of inspiration.

The view from my bed

My wall of notes and cards. Whenever I get a handwritten note in the mail, my mood immediately improves. I am shocked (really, truly, completely surprised) by the thoughtfulness and kindness of people I know. Some of these cards are from family, some are from close friends, but many are from people that I would consider just acquaintances, who took the time and energy to send me an encouraging though when I really need it most. This wall reminds me that you never truly know who you affect as you go through life, and it’s just so lovely to look at from my sickbed. I also keep my “cats pajamas” shirt that my work peeps signed after my surgery, and a calendar where I can cross off every day and really see how close I am to the end of chemo.

The inspirational collage on my door. When I was in the hospital with my bowel obstruction (when I found out I had cancer) my wonderful roommates put together this poster for me. It’s a collage of cheerful photos and sayings, and it’s just a happy thing to look at every time I walk out the door. As if that wasn’t enough, they included a little secret pocket full of inspirational sayings to get me through the day. It’s nice to read an encouraging thought before facing another loooooong day, and my absolute favorite quotes get put up on my mirror, like this one from Robert Frost. 

    There are many more inspirational things that keep me going throughout this ordeal. Messages on facebook from friends I haven’t seen in years, the constant support of my family (especially my mom), long prayers, feedback from this blog, and the kindness of my medical team… if I think about it, I’m really constantly surrounded by sources of encouragement. It’s a huge blessing, and much of it is due to you guys. So please, keep it up. Keep sending me your thoughts and prayers (I really think that helps), and please know how important your support has been, and how grateful I am for all of your kindness during this difficult time. I don’t know if I’ll ever be able to express how much each and every gesture means to me, but I’ll keep trying!

Wigging out

   Wow it has been way too long since I wrote anything. Sorry everyone, I guess I’ve had a pretty eventful week. Let’s see… my mom left on Friday and my friends Jim, Betsy, and Lucy did a great job of keeping me company/ babysitting me/ taking care of me until my sister got here Saturday afternoon. I feel like I’ve been awfully busy with my sister, although mostly we’ve been staying home and trying out a bunch of new, healthy recipes and watching a lot of TV. It’s a tough life, right?

    Oh, and another really exciting thing happened… my wigs arrived on Monday! I was definitely looking forward to that. When I first found out about the whole cancer thing I wasn’t even really sure if I would want to get any wigs, but then I learned that my insurance refunds me up to $500 ($500!!!) in wigs per calendar year. Well, they call them “hair prostheses” and require a prescription from your doctor, but it’s the same thing. Turns out $500 doesn’t get you very far in the wig world though, since any decent synthetic wig costs at least $250 anyway. Cancer is expensive! So now I have four options when it comes to the top of my head: I can go bald, wear a wig, tie on a scarf, or put on a hat. Let’s examine them one by one.

1. Going bald. 

Hello up there!

Pros: Super easy, no prep time. I have been told I have a pleasantly round head.

Cons: Quite chilly, especially in the winter. Also, it is obvious that I have cancer and sometimes people give me odd looks. Today I thought it would be funny to stand in the “hair care” section of Marshalls and sigh forlornly while staring at the products; apparently no one else shares my sense of humor.

2. Wearing a wig.

Hair. In my face. All the time.

This wig is actually more flattering, the lighting is just bad.

Pros: Not immediately obvious that I have cancer. Easy to achieve a chic hairstyle with absolutely no time investment.

Cons: It gets really hot. When I wear a hat I just whip it off as soon as I get warm to cool off, something tells me that this will not be as socially acceptable with a wig. Also, I feel like my hair is always in my face, and I can’t tie it back because then the mesh-wig part shows.

3. Tying a scarf on.

It's staying on, for now!

Pros: Can be more festive than a hat. Lots of different ways to tie it and show off my individual style. It says “I might have cancer, but I have cancer with flair”.

Cons: I really don’t know that many ways to tie a scarf, although I see ethnic girls on the street rocking cool scarves all the time. I can barely manage pulling it into a bun-type thing without having it fall out immediately. Also, I feel like it looks super cancer-y.

4. Putting on a hat.

So warm and fuzzy!

Pros: Very warm and winter appropriate. Can easily be removed when I get too warm.

Cons: When wearing a cool-looking knit hat, the wind will go right through it and my head gets very cold. To combat this, I wear a less-cool-looking hat outside and switch to a knit hat indoors. Who wants to carry around two hats?

    Well, there you have it, the four head-styles (a more appropriate term than hair-styles, I think) available to a woman undergoing chemotherapy. It could be worse though, I could be a dude and then I’d only have two options!

Face Time

    Most of you have never seen me without makeup. If I tried, I could probably list every person in the last year who could have possibly caught me in the small window between waking up and doing my makeup, and if you exclude family and roommates that list is TINY. It’s not like I’m terribly ashamed of the way I look, it’s just that putting on makeup is an important part of the way I like to present myself to world. It’s the same reason none of you have caught me out and about in sweatpants and flip-flops, I don’t really want people to see me that way.

    What’s the problem? Well, it’s hard to feel pretty when you’re sick. It’s not like this is some groundbreaking statement, just about anyone who has spent a weekend shuffling around battling a bad head cold can back me up here. There’s nothing appealing about dark bags, puffy eyes, red noses, or splotchy skin. Fortunately, most illnesses come and go in a reasonable amount of time and let us all resume our happy, fresh-faced activities. Unfortunately for me, I’m in it for the long-haul this time. There are plenty of days when I’m feeling tired or down, and I just don’t feel like making myself up. That would be all fine and dandy if I didn’t care about it, but the truth is that seeing myself without any makeup on, actually looking sick, makes me feel more down in the dumps than before, and I don’t want to go out looking that way.

    So here’s what I’m gonna do: I know you guys like pictures, so I’ll document what I look like as I go through my regular makeup ritual for everyone to see. I think it makes a big difference, so hopefully this will keep motivating me to take a few minutes to pamper myself in the mornings. On days when I’m really sick and can’t be bothered to do anything to my face, well, everyone I know will already have seen what I look like without any makeup on so it won’t be a big deal.  

      (If this was a movie, this is where the snazzy musical montage would play while I got ready and took a bunch of photos. Also, I’m well aware that it’s past 3 in the afternoon and I’m just now getting myself ready for the day. Shut up. I have cancer.)

    Oooh okay deep breath aaaaaand this is what I look like with nothing on my face.

Well, that’s a lie, I have a lot of features on my face like eyes and lips and a nose and stuff. I mean I have no MAKEUP on my face, which makes this is a pretty scary picture for me to post, and probably a semi-scary picture for you to look at. Let’s move on, shall we?

Much better. This is me after doing my foundation and concealer. It’s funny how not having hair changes how you look. I think the quality of my skin is much more noticeable now, and so I spend a lot more time covering blemishes and trying to lighten up those dark areas under my eyes. Another thing that I do more now that I don’t have hair is….

Add blush!!! I was never much of a blush girl before, but it’s crazy how a pop of pink on your cheeks can make a huge difference between looking kinda tired to looking very healthy and awake. Now I do my eyes and…

TADA we’re done. I’m forever grateful to the eyelashes that still haven’t fallen out. They’re definitely sparser than they used to be, but if these last few suckers can stay with me for a few weeks longer I’ll be a happy girl.

Don't be a Stranger

    My second looong week of chemo is over, hooray! The effects of chemo are always a bit delayed, so I’m feeling much worse this weekend than I was during the week (jumping around like a non-sickly person on Friday probably didn’t help). Chemo brain is in full force, and lots of sleeping and cuddling under the blankets means that I’m in a mental fog, so forgive me if this is kind of rambly.

    First of all, I am SO SO happy that I got to get out of the house and stop by the Children’s Hospital party on Friday. It took me about 20 outfit changes to find clothes that somewhat fit, but as it turns out I could have gone in sweats and still had a fantastic time seeing people that I really missed. This was a pretty tough week at chemo, and having a couple of hours to feel somewhat normal again and socialize was really wonderful. I might have over-exhausted myself just a little, but I think it was completely worth it. 

The only photo taken!

    In talking to people that I haven’t seen in a while, I noticed that it might be kind of confusing for friends to figure out how to best support me during this difficult time. A lot of people mentioned wanting to give me “space”, which is very thoughtful, and I think many people just don’t know what to say or how to say it. So how about I make it easy for everyone and just tell you what’s helpful, yea?

Here are things I love:

1. Emails or facebook messages. I’m missing out on so much that’s going on at work and in your lives, so please feel free to write and tell me how you are and how your day went. What’s the latest gossip? Any fun winter plans? Maybe I’ll be having a bad day and I won’t be able to respond, but it always makes me happy to hear from my friends. An empty inbox is a sad inbox.

2. Cards/packages. I am keeping a collection of all the get-well cards that I’ve been receiving. They go up on my wall right across from my bed and it is so encouraging to look at them when I’m down. I guarantee that if you drop me a card in the mail it will make my day. There’s nothing better than receiving NON-medical-bill-related envelopes!

3. Follow my blog, friend me on facebook. I don’t think it’s lame that we haven’t talked for five years and now you’re back in my life again, I think that’s AWESOME!!! One of the best and most unexpected things to come out of this mess is the opportunity to reconnect with old friends. It’s really touching, actually, when someone completely unexpected shows support. 

Things that are not-quite as helpful:

1. Phone calls. I am so in-and-out of doctors appointments and hospital visits and naps and everything that it’s very hard to catch me at a good time to talk on the phone, and frankly it can be a bit draining. Most of my phone calls are medical-related or from CVS regarding a prescription, and that is okay with me.

2. Sending food. Up until last week, this was amazing and delicious! Unfortunately, now I have to be very careful with what I eat and how it is prepared, so food gifts and restaurant outings are complicated. 

   I hope that makes things easier for all of you guys. What I’ve really learned from being sick is that when in doubt, any contact is helpful. I know it’s the thought that counts, but if that thought can be written down and conveyed somehow... well, that counts even more!  I have such a varied and lovely and wonderful support group of friends and family, I cannot possibly thank you all enough in this post or any other. Now please excuse me for my pre-supper nap.

Big n' Toasty

   Today is one of those days when I’m not feeling so great, physically or mentally. In general, my chemo weeks seem to start out okay, but as the week wears on the effects add up and I get a little more run down. I think what’s getting to me most at the moment are the visible physical effects that all these drugs are having on my body. Today alone I’ve swallowed or ingested eight different drugs, and that doesn’t even include the weekly ones that have long lasting effects. So what exactly am I dealing with? Let’s break it down.

1. Hair loss. Okay, I know this one is a given. We all knew it was going to happen, and I was as prepared as could be. I might start to feel differently when my hair has completely fallen out and it no longer looks like I caught mange, but for now I am NOT happy with the patchy, stubbly conditions on my head. Even when I don’t feel sick, I look sick, and it’s just a constant reminder that I actually have cancer. No fun.

so patchy and sickly looking!

2. Fluid retention. One of the drugs that I get for chemo, cysplatin, can do quite a number on your kidneys. To protect my kidneys from any damage, I get A LOT of fluid during my chemo weeks. There’s at least 2 liters going in during the morning, and I drink another 1.5 throughout the rest of the day. Combine that with steroid treatment, and I blow up like a balloon. For example, on Tuesday morning I weighed in at 129lbs. This morning I weighed 137lb. All that water is just hanging out, making my face puffy and my fingers fat and generally making me feel inflated and uncomfortable all over the place. And another thing about that damn scale…

3. Weight gain. I guess this can be attributed to multiple factors. The fact that I’m going through menopause, taking steroids, and occasionally eating quite a lot means that I am putting on more than just water weight. This wouldn’t normally bother me that much since I’m used to my weight fluctuating a bit, but the wacky hormones mean that I am putting on weight in places I’ve never gained weight before. Sure my butt is bigger, but I’m also much thicker all around my midsection and hold on... what is UP with back fat??? I’m actually going to have to buy larger sweatpants. Heck, I’m going to have to buy larger underwear. I’ll spare you any gross photos of what I look like trying to fit into my normal pants, but here’s a hint.

4. Hot flashes. Speaking of those sneaky menopausal hormones, it seems they like to toy with my internal thermostat as well. I was actually quite curious about hot flashes, are they really as horrible as middle-aged ladies like to make them out to be? Well, yes, yes they are. Individual hot flashes aren’t that bad, it just feels like the room warmed up suddenly and now you’re all sweaty. Try getting some sleep or relaxing when the temperature changes radically every 20 minutes, and you’ll see why it can start to get on your nerves.

    So to recap: I’m bald, bloated, fat, and sweaty. I don’t feel like myself and I don’t look like myself, and that’s getting me down.