Cancer sucks. Chemo sucks. Radiation sucks. But, I’ve got my eye on the prize.
Eye on the Prize 2012/01/22
Managing the crazy 2012/01/12
Before being diagnosed with cancer, I was not a hypochondriac. What’s the opposite of hypochondria? Whatever it is, that’s what I was before my diagnosis. I only went to the doctor when symptoms and problems were at their worst. As an example, a few years ago, I could tell I was getting sick, but I just let it go. Finally, I woke up one morning, called a co-worker to tell her I wasn’t feeling well and wouldn’t be coming in to work that day. She asked what I was wrong. I told her nothing, but it really felt like I had an elephant on my chest. She made me swore I’d go to the doctor (which I didn’t want to). I went. Very early pneumonia. I offer this story as an example of how I’ve never thought the worst when I don’t feel well.
When I discovered the lump in my neck, I didn’t think the worst. I didn’t think lump and think cancer, as some normal people would. My first thought was it’s probably a swollen lymph gland and I was about to have one hell of a case of strep throat (I figured the strep throat would have to be bad if I could feel the gland). I didn’t even Google “lump in neck.” I didn’t look it up on WebMd. It never once crossed my mind to do any of these things. Fortunately, I did think enough of the lump to go to the doctor, even though I felt like I was overreacting, but I figured better safe than sorry.
I’ve taken up quite a bit of space to get to my point: I wouldn’t say I’m quite a hypochondriac now, but I’m a little quicker to freak out over everything now. I got sick over the weekend: cough, fever, tightness in chest. I was pretty sure I was getting sick and that these weren’t radiation-related, but in my feverish moment I started looking up my symptoms and whether they were related to radiation. After a while, my husband threatened to take away the computer, my phone and my iPad so that I could no longer look up my symptoms because I was starting to get freaked out. Not by my current symptoms, but by all the possible side effects of radiation I could develop after undergoing radiation therapy. There are very real side effects from the combination of chemo and radiation that I’ve undergone, namely stroke, lung problems and a second cancer. There have been points where I’ve really questioned undergoing treatment, especially radiation. But, after talking with my family and my doctors, I decided it was better to treat the cancer I have and deal with health problems I develop down the road at that time.
Today, I read an article about women treated for Hodgkin’s may develop early ovarian failure. As with all things fertility-related, “advanced age” (my words, not the article’s) plays a role. Women over the age of 32 face a higher risk. I’m 36. I will complete my 37th run around the sun in five months. My husband and I are no closer to having kids than we were before my diagnosis. Given the fact that I was about to complete a 36th trip around before being diagnosed and kids weren’t quite in the picture, I’m not ignorant to the role age plays in fertility. We’ve always said we’d adopt if getting pregnant was an issue, and we’re both comfortable and settled in that decision. Reading the article doesn’t freak me out about ovarian failure and struggling to have babies, but, rather, it’s just another article I’ve read about possible cancer treatment side effects that has my minding going to the hypochondriac areas I’ve discovered about myself. The logical part of my brain knows that I can’t live the rest of my life worrying about ovarian failure, stroke or second cancers, but it might be time to stop doing research on symptoms and side effects. It might be time to take a break from reading the informative and helpful articles and focus on the here and now and not the “what might happen in five, 10 or 20 years from now.”
Claustrophobia 2012/01/07
I started radiation therapy this week (I got inked, but the fun drawings on my chest aren’t permanent. 
) They put the mask on and did more simulations then moved me to the treatment room and did X-rays and films before administering treatment. I have phobias, but claustrophobia has never been one of them. I have a weird thing with heights, I have a weird thing with open spaces (combine the two and you’ll understand why a woman gave me weird looks at the ACL Theater one night!), but put me in an enclosed space, never really been an issue. Until Thursday. And Friday. And possibly every day until the end of January. I don’t think the most prolific wordsmith in the world would be able to adequately described the tightness of the mask, but I’ll try- it fits so tightly across my forehead, eyes and mouth that I can’t open my eyes or mouth. Ok, well, that wasn’t very prolific. I have small holes over my nostrils so I can breathe, but the longer the mask is on the more I feel like it’s closing in over my mouth and throat. There’s a machine that administers the radiation and that machine is connected to a computer. Well, the computer locked up causing the machine to lock so there I was bolted to a table feeling like the world was closing in. I made some movements with my hands and they unbolted the mask while the computer was shut down and rebooted. Once everything was up and running again, they resumed treatment. They zap me at three different angles in my neck and four in my chest. They move the table to get the different angles and that is just a weird feeling to be bolted to a table, unable to move, unable to open your eyes and feel the table moving. Oh, and the mask is so tight across my forehead I get to walk around with fun criss-cross markings and circles on my forehead (I was in the mask for two hours Thursday and eight hours after I left CARTI that day I noticed the marks were finally going down). I try not to complain about the mask to my therapists since they are, you know, just trying to save my life and all, but I did try to bargain with them to give me one treatment without the mask to see how still I could be (I promised them I could be really extra still). They weren’t buying it. Something about even moving a millimeter would radiate the wrong, and probably a healthy, area. Sheesh, they are so picky! I tried to convince them I’m very good at playing possum, just ask my MIL whenever she shows up at my house unannounced; they still weren’t buying it. So, until I’m able to convince my therapists how still I can really lie there, I’m just counting the days until my box of assorted liquer-filled chocolates arrive. I will then rush home after each treatment to enjoy my one treat of the day by eating a chocolate to countdown my treatment. And lord help me and those around me if the esophageal damage ends up keeping me from enjoying my chocolates.
Gettin’ Inked, Almost 2011/12/29
Yesterday I went for my radiation simulation. It was a more emotional day than I anticipated. I told my radiation oncologist that, while it was nice having a break between chemo and radiation to help my body get back to normal, I felt like it was a tease because I almost forgot I had cancer until I got up that morning remembering I wasn’t quite finished with my treatment. The past three weeks have been great- I got to a point where having cancer wasn’t the first thing I thought of in the morning and the last thing I thought about at night; my husband and I celebrated our fifth anniversary in Austin, where I could forget about cancer for a while, but it all came rushing at me Tuesday night as I thought about starting radiation the next day.
I thought yesterday was going to be the day I got inked- getting my markings on my chest so the technicians know where to aim the radiation each day. Instead, I got my Hannibal Lecter mask. The areas to get radiation are determined by the first PET scan I had back in May. So, based on that scan, I’ll get radiation to my neck in addition to my chest. In order to protect the glands in my neck, in particular my salivary glands, I have a mask:
I wasn’t prepared for getting a mask as all the talk had originally been about getting radiation to my chest, but I was relieved to know that I was going to get radiation to my neck since that was where all this craziness originated. I may not have been prepared to get my own mask, but I was more than familiar with the mask as my mom had to have one when she was getting radiation for her brain tumor. The first time I took her to treatment she warned me she would “look like Hannibal Lecter,” a comment that caught me off guard mainly because I didn’t know my mother had ever seen “Silence of the Lambs.” And, really, she wasn’t too off. It was a little weird seeing her in the mask, but it was a sight I got used to. Thinking about her and the mask made me quite emotional yesterday. I didn’t realize I’d have my own Hannibal Lecter mask. It took a lot to hold back tears as I thought about my mom and what she went through.
As difficult as yesterday was for me, it gave me a chance to be thankful. As I was in the women’s changing room getting back into my clothes I overheard two women talking. One was talking about the financial issues she’s had paying bills since getting cancer. I’m thankful that I have a job to go back to. I’m thankful I haven’t had to deal with financial issues or had arguments with my insurance company over covering treatment. I’m thankful that I have a light at the end of my cancer tunnel. I’m thankful that I know I’ll come out on the other side healthier. I’m 99 percent sure I’ve made these statements in previous posts, but, honestly, it’s easy to get down, it’s easy to feel sorry for myself and sometimes I just need to remind myself of these things so I don’t get lost in wallowing.
For the record, this is as close to reading a post about my “2011 in review” or a “2012 resolutions” post; I’m thinking that that title of my blog tells people what happened to me in 2011 and what I hope to accomplish in 2012.
2011/12/24
A surprise package I received yesterday
Above is a photo of a surprise package I received from a sweet friend yesterday. It’s the training shirt for the Western PA Team In Training for the Leukemia & Lymphoma Society and the card that shows the friend ran in my honor. Caitlin is a sweet person whom I’ve never met in person even though she used to live in LR; rather, we know each other through Twitter and Facebook. When she started running last year, I started encouraging her as I was working to improve my running by training for a half marathon.
Caitlin decided to run her first half marathon this year at one of the Nike Women’s Marathon races through LLS’ Team In Training. When she started her fundraising efforts this summer, my husband and I donated. I then e-mailed Caitlin and told her what not too many people knew at the time- that I was going through chemo for lymphoma. Even though I’d never met her in person and hadn’t told many people about what I was going through, I wanted to thank her for her efforts and let her put a face to her cause. It was a tough e-mail to send as I was still working through acceptance of what I was going through and trying to accept that I was now part of group of people that others raise money to help. Caitlin responded to my e-mail by asking if she could run in my honor; her e-mail had me in tears, but happy tears as I was so touched that someone wanted to run in my honor.
Yesterday, I opened what will be the best present I receive this year (since being cancer free won’t come until 2012). It’s still touching that someone I never met in person ran in my honor. She sent me a sweet note and let me know that Nike participants have raised more than $12 million for LLS. And I love that she sent me a t-shirt; when I’m back on my feet and ready to run again I will wear that shirt with pride to remember all that others did for me, to remember how far I’ve come, and to remember those still in fight who I hope to help the way Caitlin helped me.
Random thought Tuesday 2011/12/13
First, I survived chemo. My last treatment was December 1- exactly six months from my first treatment on June 1. I was pretty nauseous for about four days, but I didn’t have to get the dreaded Neulasta shot, like I thought I might. I didn’t even complain that much about being sick knowing that it was the last time I would feel that way. I’m sure I was the happiest and bounciest the nurses and staff at my doctor’s office have ever seen me. It’s amazing how how happy one can be about getting chemo knowing it’s the last time. It was crazy to reflect on the past 12 treatments. On the day of my first treatment a man was receiving his last chemo treatment and got a little party- the nurses pop these paper confetti things and everyone cheers. On that day, I wasn’t sure I would get my party; I couldn’t imagine that I would get to that point. I can still remember walking into the chemo room for the first time like it was yesterday. Over the weekend, it dawned on me that I was really finished with chemo- meaning, the side effects would start reversing. My hair should start growing back, the dark spots on my nails should go away (I hope! If not, it’s a good thing I make nail polish for a living!!), other weird side effects that I don’t want to detail should start to reverse. I’m resting up getting ready for radiation, which will present its own set of side effects, but I know it can’t possibly be as bad chemo so bring it on!
My husband and I are planning a trip to Austin to celebrate our fifth anniversary and no more chemo. We were talking with some friends the other night about Austin and G mentioned the first time we went there we stepped into a bar that was having a fundraiser. G wanted to go somewhere else, but I really wanted to go to the bar and it was just $10/each so we stayed. We had a blast: the cover band lots of good ’80s and ’90s tunes that we danced along to. The fundraiser was for the Leukemia and Lymphoma Society. That meant absolutely nothing to me at the time. I knew was LLS was and did, and because of my family history of cancer I’ve always supported organizations focused on cancer research and helping cancer patients. If I had only known at that time, two years ago, what lay in store for me.
It’s been such a crazy year and I have a few more weeks of craziness ahead of me, but I’m looking forward to having a much less eventful 2012!
No Mo' Chemo!
Caregiving: guest post by my husband 2011/11/28
CURE Today is a magazine I receive free as a cancer patient (Who knew being a cancer patient could have perks? Ha ha!). There was a call for submissions for blog posts on being a caregiver so I told my husband he should write about his experience as my caregiver. I’ve said it many times before, but I think it can’t repeated enough times: my husband has done a great job taking care of me. He’s patient, kind and doesn’t complain (at least not in front of me) no matter how ridiculous a request might seem or how many times I send him to the store in one day because I can’t seem to find anything to eat that doesn’t make me puke.
So, to brag on my honey a little bit, here’s a link to his blog post on CUREToday.com:
No mo’ chemo 2011/11/27
Thursday is my last day of chemo. I am so excited! I’ll still have a few weeks of radiation ahead of me, but being finished with chemo, well, I just can’t quite find the words right now. Six months ago, when this craziness began, I never thought I would get to this point. Logically, yes, I knew my last chemo day would come; but, at my lowest points, I just never believed I would get to this point.
As is required this time of year, I’ve spent a lot of time the past few days reflecting on the year and on those things for which I’m thankful. I’ve always been a very thankful person for what I have in my life: my family, my job, my house, money to spend on the things I want and need, my friends. I realized I’ve never thought to thank God for my health. I always took it for granted. I spent a lot of time the past few months being pissed off about having cancer, but, the truth is (as I’ve stated before), I’m going to kick this thing and I’m going to be fine, so I’m thankful this year for my health. I’m thankful for modern medicine that gave me the toxins that get pumped through my body so that I CAN kick cancer. I’m thankful for awesome health insurance (certainly not something I ever thought I’d be thankful). I’m so so so SO thankful for great doctors and nurses. And more than ever, I’m SO thankful for my family and friends.
…But I get up again 2011/11/13
Music has always played an important part of my life. I love music. I’m the person in the office with her headphones in bobbing and moving to the tunes all day. My car came with a radio, satellite radio, a 6 CD changer and an aux outlet so I can plug in my iPod and listen to tunes through the speakers. Some might find all of those overkill, but I love and use all of them. I created a Chemo Playlist and a Buffett Chemo Playlist to get me through three hours of treatment. Sometimes I need the comfort of the words from songs like “I’m Gonna Love You Through It,” sometimes I need the imagery of beaches and the ocean from a Buffett song.
Music has always played an important role in my running. I’m one of those runners who needs music as a motivator. There’s no way I could have trained for a half-marathon without it. I choose songs for my training for different reasons: some for the beat, some for the lyrics. I like a good mixture to keep me going. Sometimes I need the beat of a Lady Gaga song, sometimes I need the lyrics of “Lose Yourself.”
Today, I ventured out on my first walk since being diagnosed with cancer and having fluid drained from my heart. There have been several times in the past six months I’ve wanted to get out and get moving, but something always stopped me: being tired, being nauseous, being lazy, being scared. But, yesterday, when my husband said he was going to run today, I decided we would go somewhere and I would walk. I would get back out there and walk and enjoy the scenery. I was excited. I was ready. I jokingly wondered if having less hair and less fluid off my heart would make me more aerodynamic. We went to a new pedestrian bridge that I had yet to venture across. I put my earphones, started up the MapMyRun app and clicked on my training playlist on my iPod. I hit shuffle and, as I took those first few steps, I recognized the opening strains of “Tubthumping” by Chumbawamba. I don’t think there’s a better song that could have randomly played at that moment. The song kicks off with the chorus: I get knocked down, but I get up again. You’re never going to keep me down.
I did my best to keep from crying while I was walking on the bridge so that people didn’t look at me as the crazy woman who cries while walking across a bridge, but I just couldn’t believe THAT was the first song to play. I promise you, it was completely random. If I’d remembered that song was on the playlist I don’t know that I would have even thought to play that song. I know it’s silly, but it’s like iPod knew what I needed to hear this morning to get me moving again. It’s like iPod could sense I needed a reminder: I’ve been knocked down, but, for the first time, I know I’ll get up again.
2011/11/12
As I’ve mentioned before, I haven’t reacted to having cancer in the way I ever thought I would. I’ve been much more quiet and reserved about what I’ve been through than I thought I would be. I even had one very close friend tell me she’s been surprised by how quiet I’ve been, not being near as vocal about it as I am about everything else in my life. There are two reasons for this: first, up until about one or two months ago, I’d say I was still teetering on a bit of shock. It really took me until about September to get used to the idea that I have cancer and am going through chemo. As I’ve settled into acceptance, I have become a little more comfortable with telling people and being a little more open about I’m going through. I mean, took me two months to post a new photos of me with my new short ‘do on Facebook. I told my husband the other night that I finally accepted that there’s a new “me” and there’s no going back to who I used to be. And I’ve finally accepted that.
The second reason I haven’t been as vocal is because I’ve struggled this whole time with what kind of cancer patient I want to be (and, as I get closer to the end of treatment in early 2012, what kind of survivor). I know that may sound like a weird statement, but, since the beginning, I’ve been bombarded from all sides with stories of survival. All of the stories I’ve heard and read are great; so many have given me the inspiration and strength I’ve needed to get through the mental and emotional parts of having cancer. Where I’ve struggled is with the stories from survivors who talk about how having cancer doesn’t define them. They don’t wear the title “cancer survivor” as a medal. Not too soon after I started cancer treatment, a summer issue of Runner’s World was all about cancer; talk about spooky timing. I was filled with inspiration as I read stories about survivors and was filled with hope that this was a temporary setback in life. There was story, not even a story, just a few sentences, really, that has stuck with me and really colored how I feel about myself as a cancer patient. In the “What It Takes To…” section, one survivor was quoted “I don’t wear my diagnosis as a badge of honor. Cancer doesn’t define me.” I read this very early on and began to wonder what was wrong with me that I was letting cancer define me. So, I tried to ignore that I was sick. I tried to ignore that I didn’t have cancer, even when my body after chemo was telling me a much different story. I was afraid that if I told people I have cancer then I was letting it define who I was and there was something wrong with that. But now, I’m o.k. if having cancer now defines who I am. Because the great thing about that is that I will eventually have the opportunity to help others. I’ll be able to share my story of survival so that others will know they can, too, make it through cancer. I’ll be able to put my energy into raising money for cancer organizations, both local and national.
There’s still a part of me that’s jealous of those who are able to move on from having cancer and not let it be the focus of their life. There’s a part of that’s jealous of cancer patients who have the strength and energy to run an f’n marathon (yeah, I’m looking at you, Ethan Zohn) because lord knows I don’t have the energy these days to walk a mile. But I’m finally o.k. with that. I finally realized the cancer journey is different for every person and there is no right way or one best way to deal with this. What matters is that I kick this thing so I can help others.
