One Year Strong

Last Friday one year.  One year ago I received the once again life-changing phone call.  Isn’t it funny how I can’t remember what I ate for lunch yesterday but I can tell you everything about that moment (7th paragraph) which occurred 366 days ago?  I reread my very first post, rediscovering how strong I was during the testing and staging of those first few weeks.  I was diagnosed at stage four.  I was put on a clinical trial.  We were at our last options of hope.  I honestly impress myself sometimes... I don't know how I did it.  Being strong I’ve learned isn’t a choice – it’s a necessity for survival.  And it's not easy.  But I've persevered and have honestly enjoyed myself at some points while trying!  I have been through a RIDICULOUS roller coaster of shrinking, growing, and disappearing tumors.  And I've battled through some awful infections as well as some emotional battles.   But I did it.  One year strong.  Just 7 more months of treatment and hopefully this battle will be over.  Unfortunately it will be years until I can really say it's behind me.  There will be a lot of monitoring of my health until I am completely said and done.  But it's there - and I'm just that much closer to it - the light at the end of the tunnel.

The Chemo Hangover

Well this just suuuuuuuuucks.  I have felt like crap for the past 24 hours.  Treatment was yesterday and went as usual.  The nurse dug around in my arm looking for a vein causing incredible pain.  During treatment my arm hurt and swelled from the fluid.  Krissy tried to entertain me which turned into me simply annoying her.  Just our typical visit to Siteman.  I walked out feeling very wishy-washy in my head.  I officially no longer trust myself driving home.  Hands gripped on the wheel, triple checking my blind spot as I try to merge, losing focus and going the wrong way... I'm a mess.  Treatment is starting to get the best of me.  And BTW, why do they call it treatment?!  There is NO treat about it.  Well, besides the bag of starburst jellybeans Krissy brought along and I devoured. 

I woke up today just minutes before I was suppose to leave for school... at 10:45.  I take half days the day after treatment so I can sleep off as much of the hangover as possible.  I'm not much of a sleeper-iner but just the mere fact that I can lay in bed all morning helps.  Today my sleeping-in hit an  new record.  When I arrived at school the other teachers could immediately tell I wasn't right.  After an hour they convinced me that I needed to go back home.  Apparently I looked as bad as I felt.  So home I went.  Exhausted.

The part I hate the most about all of this is taking care of myself.  Have you ever stayed home sick and found you'd rather lay in bed thirsty than muster the energy to get a drink from the fridge?  I had that battle with myself a couple times today.  I just want to be selfish.  And it's hard to do that when I don't have a significant other (which is my choice) to take care of me.  But I don't have a mother, either.  My sister actually has a real job and 382093 other things on her plate.  My roommates are in their own relationship.  My friends all work.  So I get mad because I don't want to make my own food let alone clean up my dishes (even if it was simply a frozen dinner that I popped in the oven from Trader Joe's).  I don't want to have to cancel plans the night before treatment so I can run errands and get all things in order before I devote my next few days to my bed.  I just don't want to do it anymore.

I know I'm complaining and I really really really try to find the positive, but I blame today on the unexpected nausea.  Being nauseous is seriously one of the most ANNOYING feelings.  I wasn't in pain today (thank goodness) I was just incredibly uncomfortable.  My body is truly exhausted and it feels like I'm lugging around the body of an elephant.  From my experience with every other chemo I've been on, recovery only gets tougher.  I can't believe that I'm already feeling this bad and I only have 6 down.... that means TEN MORE.  Uuuuuuuggg.  If I only had just a couple more treatments to go I'm sure I wouldn't be this big of a Debbie Downer right now.  Sure everyone gets sick now and then and we all learn how to suck it up and take care of ourselves.  But this is EVERY THREE WEEKS.  I was feeling soo energized earlier this week.  But I guess that's when I should know it's time for chemo - when I actually feel really well.

I'm quite possibly over annoyed right now as well because tomorrow marks one year since I relapsed.  It's emotional.  It's a day I will never forget.  And even though it was over 8 years ago, I can also tell you about every moment that occurred when I received the very first phone call of my life informing me I have cancer.  As well as the phone call after my transplant that not all of the cancer was destroyed (hence this current relapse).  I'm sure I just need a day or two to feel better physically and I will mentally find myself on the same level.   I always do.  But until then I will be sulking and eating 5000 calories a day to keep the nausea away (and no I'm not exaggerating, I consumed A LOT of food today.  Yippie for swimsuit season....).

Living Everyday to the Fullest

Today was wonderful for 2 reasons.  Reason #1 - gorgeous weather.  Reason #2 - reason #1 made for great nappers at school today!  While they rested, I sat outside in my rocker on the porch taking a much needed break... and working on my laptop.  I was soaking in the rays feeling my eyes grow heavy as I worked away.  I found myself staring out into the school yard reflecting on the calmness that surrounded me.  I set my computer down, curled up in a ball, and closed my eyes.  I drifted off imagining myself as a cat soaking in the warmth from the sun.  It was only twenty minutes, but it was an amazing twenty minutes.  As I could feel myself drifting into the nap, I was thinking to myself, 'How many people can say they took a nap in the sun at work today?'  (now granted, yes I was at work, but technically I was taking my break).  It was only twenty minutes because my phone that was in my lap vibrated from a text (and half startled me!).  It was from a friend who shared with me, "So I just found out that a guy I went to high school with is really sick and probably not going to make it.  Really makes you want to live every day to the fullest." 

I read this again and thought, "Duh?".  Then I remembered, not everyone acknowledges this.  And it's not that people don't live life to the fullest, but how many go out of their way to make sure everyday isn't taken for granted?  As I sit here and reflect on my day, I debate if mine was truly lived to the fullest: Eight hours of school, 1 hour of after-school meeting, 1 hour of dinner & tv, 30 minutes of talking on the phone, 30 minutes of catching up on emails, and that leaves me sitting here reflecting.... what did I do today to live it to the fullest?  And I'm realizing, I didn't DO anything unoriginal or spectacular.  I replied to my friend, "It's not just how you live everyday, but what you gain from it that makes living everyday to the fullest.  It's different for everyone."

That 20 minute sun-kissed nap was my "living in the moment" experience today.  It's nothing special on paper, but it sure did make me feel like I was living my day to the fullest.  In the past 30 days I haven't journeyed to any exotic countries, dined at any fine restaurants, met any famous people, or experienced any memory-making adventures.  Does that mean I'm not living my days to their fullest potential?  Perhaps.  But that's not reality either.  My reality is fairly simple.  But it's MY reality, and I have the option to view it as ordinary or life-fulfilling.  You can probably guess which option I choose daily.  And I hope you do, too.

The Little Things of My Week

You know how I love the little things.  Especially when they are unexpected.  Last week I received several amazing pieces of news.  And when I say amazing, I mean pretty cool to me; not the life-changing-tumors-are-gone type of news.  But I don't know if I'll ever receive news as amazing as that... and I'm okay with that!

First was a phone call from one of my favorite nurses.  I called in a refill for one of my prescriptions earlier in the day to her office.  Instead of calling the pharmacy she called me back - "I have 6 months of samples waiting for you at the front desk."  SWEEEEET!  I love it when they look out for me :) That's a few hundred dollars back in my wallet!

Probably the MOST exciting news of the week came from my sister.  I was in a convo with someone about my treatments and I mentioned how I have them every three weeks through this December.  Krissy was there and interrupted (she always has to be right), "Mel, I've been telling you, I don't think it's until December."  This girl could have done my math homework for me in high school (although usually I had Amy or Bryan do it).  "You have 16 cycles; this will not last until December.  October will be your last treatment."  Me, "WHAT?!  ARE YOU SERIOUS?!"  I honestly haven't done the math.  The docs always say it's a year of treatment.  So since I started in January I just assumed I was going until December.  HOW FREAKING COOL IS THAT?!  Maybe I can talk them into only giving me 15 rounds instead of 16 so I can kick off 30 chemo free??  Haha, either way, there is going to be a GIANT party - get pumped!

This past weekend I was in Chicago to celebrate St. Pat's with some favorites.  While visiting Lisa and Steph I was fortunate to visit with many more of our friends.  And it is always so fun to see people for the first time since my great news - it's like it's brand new news all over again!  Everyone is excited and hugging and cheering as if I just told them.  I like this whole remission thing :)

The week began and ended on very good notes.  Overall, the neuropathy in my hands has not been as intense this cycle - hooray!  But I noticed increased pain on both ends of the week.  While having couch time with Maaria and Sheila two Sunday's ago Sheila kindly gave me a hand massage - aaaaa-maaaaa-zing.  Then while driving home from Chicago on this past Sunday Krissy couldn't deny my request as my swollen hands rested on the pillow I was wishing my head could be sleeping on.  Hand massages are seriously the best - I think it's time to invest in a hand masseuse!  

Here's to hoping for another week filled with wonderful little things!  Then again, when living with the glass half full it's inevitable - they will come :)

Month One into Remission

One month of remission - pretty damn cool.  I wish I had more of an update to provide, but at the same time I'm pretty in love with the fact that there is nothing new to report on!  In my last post I was boasting that I woke up without a chemo hangover - mostly true.  I woke up feeling fine, but holy crap the sandman hit me hard that afternoon!  And it lasted about 48 hours!  But ever since I've been feeling great.  No unwanted side effects.  No unwanted ailments.  Just living the life of a 29-year-old cancer survivor, hanging out in remission :).

I've been finding myself still living everyday like it's the last.  My only goals in the day revolve around happiness.  I've been reflecting a lot while in the moment - soaking up how wonderful so many little things are in life that we take for granted.  My favorite from last week was from one of my girls at school - she ran back inside for one more hug from me before getting in the car with her parents at the end of the school day.  Hugs from little arms are truly some of my favorite things in life.  I have so much fulfillment in life from my kiddos. 

I've decided it's time to find more in life.  I have found happiness and joy in so many things that I do, but I want more.  It's time to do more than just live for the moment; I want to find life satisfaction.  This is where the lines become blurred as a cancer patient.  I've taught myself to just push through and make the best of life - live for the moment, always say yes, find the best in every situation.  I have already increased the quantity of happiness of my life, I now want to explore the quality.  I'm ready for more.  I'm ready to fall in love.  I want to give back like those who have given to me.  I'm ready to exercise not to just tone my body, but to feel the benefits of being healthy.  I want to meditate.  I'm ready to expand my mind and get more out of life.  I'm no longer relying on a scan to tell me my future, I'm ready to make it.

5 down, 11 to go!

I completed cycle 5 of BV last night at Siteman.  Honestly, I went into with my head kinda low.  No stress, nothing to complain about, just exhausted from the day and wanting to be in my own bed, not one at Barnes.  I left work actually happy to be walking out the door slightly early - it is very rare for me, but was one of those days!  There was a volcano of noodles during lunch, a 30 minute wagon-ride tantrum, a display of why a tire swing should only hold 3 children, not 4, and I some how ended up with lasagna in my shoe.  After it took twice as long than normal to get them to sleep I went straight to Google to confirm the craziness- yup, it's a full moon.

I entered Siteman to a bit of commotion, causing me to wait a bit for my labs.  Krissy was running behind, my phone was dieing, and I didn't bring anything to entertain myself.  So I sat just rubbing my uncomfortable hands, slowly slipping into complaining mode.  When the medical emergency was transported from the floor of the laboratory to a more appropriate location (reminding me that my day could always be worse), I headed back to have my blood drawn.  The tech and I chatted about the chaos of Siteman that day, then her ending with, "Do you know if it's a full moon?" 

Krissy arrived and the waiting really begun.  Although I really haven't seen her in forever (like a good week) so there was lots to talk about and keep us entertained.  My visit with the doctor's resident and nurse coordinator went wonderfully.  No new news (oh!  except my white counts are back from last time's dangerous drop!), but a new prescription for some Vicodin to help with the neuropathy pain.  She confirmed what everyone has been questioning... why do I stay on this drug if I'm in remission?!  BV is as old as a preschooler - there is still a lot to learn.  From their research, partial or full remission is expected from the first 4-8 cycles.  But from there it's up in the air.  Is that enough for someone to be cured?  Or is it just keeping the tumors from growing back?  There is just not enough research yet.  They were so confident about my first chemo options back in 2004 because those drugs are older than I am.  There has been a lot more time for research to be developed.  I hope as time passes and when they discover that BV is a miracle cure for Hodgkin Lymphoma the put my face on the poster.  Hehe :)

Treatment went smoothly as well as the hangover!  The nurses have learned to dilute my chemo with some saline so it no longer hurts.  I was wrapped snug in heated blankets while Krissy and I watched The Big Bang Theory.  My chemo nurse was the sweetest and just laughed at all of my "complaining".  As well as the chemo techs - it's just somehow nonstop laughing when we're all together. 

I left Siteman feeling almost better than when I arrived!  I was dreading being poked, feeling sick, and all of the consultations (like that one time when I was on the chemo pill and I was told that even though it was helping my tumors shrink, it could also cause cancer.  Awesome).  I'm really sure that both my lab tech and chemo nurse getting veins on their first tries helped with that - so much less pain!  I fell asleep rather early, but woke up this am ready to go!  I took a half day this morning to sleep off the grogginess, but have slowly realized I didn't really need it this time!  Sweet!  But don't worry, I've been a good girl and still stayed in bed and rested :) 

Hooray for no chemo hangover!!

The hardest part?

"The hardest part about having cancer is when it's over."

Someone told me this when I was living at my dad's in 2004, newly into remission and recovering from my transplant.  I was 22 at the time and thought her words (spoken from experience) were CRAZY.  What on earth is she talking about?!  Does she not know what I just endured in the hospital??  I literally felt my body dieing until it reached it's weakest moment and BOOM, I was into the pain and misery of my transplant.  I was BEYOND happy to be walking and eating normal food again, let alone living outside of the hospital.  My 15 month battle was finally coming to an end - the BEST part, not hardest.  This woman might be nuts...  But then again, she is a close friend of my father's so even though I didn't trust her words of expertise, I decided to keep them in the back of my mind.  Good thing I did - she was right.

I started off 2005 with radiation therapy and remission.  I was so young and I had the entire world of opportunities in front of me.  I was also falling in love with someone; someone who was also going through the exact same phase in life.  He was the same age with a similar story... and he had entered remission only a few months before me.  We experienced treatment, doc appointments, and hospital stays together.  What was a strong bond slowly became a 6 year relationship.  The love did not survive, but we both did.  And I know we were so successful 7 years ago entering remission because we had each other.  So those words of wisdom were absolute trash to me.  Yes, it was difficult reentering the world again, but it was exhilarating.  I was once again free.

In my last post, Week One of Remission I touch on having to deal with ordinary life stress as if it was never a stress in the last 12 months.  I just reread that and realized wow, I might have been lucky to experience remission last time as a happy-go-lucky-22-year-old, but with 30 on the horizon, entering remission is very different.  I'm in a much different place in life.  Even though I was still dealing with the responsibilities of life during the past year, I really just didn't care.  The only thing I cared about was being happy while fighting a terminal illness... an illness that has not only became the determinate in so many of my day-to-day decisions, but life decisions as well.  Why should I care about putting enough in my savings every month if I might never reach a future month to use it?  Well, now that it's confirmed that I'm going to be staying here for awhile (and to be clear, this is not a complaint), it's slightly stressful. 

SO, think I'm crazy?  WTH is this girl complaining about?!  She just beat cancer!  Again!  It's time to rejoice, NOT dwell on finances and life goals!  Haha, well the good news is that I like to think that I have a pretty quick rebound with things like this.  So have no worries, usually once I get it out of my system and have the opportunity to complain to the world I'm pretty much over it.  So since last week, I am feeling a lot better about life.  What also helps is hearing about it from others, too.  A friend of mine who I met through Amy when we were in high school has also beaten the odds.  She wrote to me the other night confessing her dark days after cancer.  Why do we all feel so lost when it's all said and done?  Cancer, you sure do have a way of controlling not only our bodies, but our minds as well.  Well it's too bad you chose me, because I don't let down very easily.  Ask Kristin Jane, I put up a good fight if there is something I want.  I know how to always get my way :)