TOMORROW!!!

It's here.  It's finally here.  Holy hell I cannot believe it's actually here!  It has been a long journey... one year, eight months, 2 weeks, and 2 days to be exact.  But it's real.  That giant lump in my throat continues to remind me that it's real.  I'm finally going to be done with chemo!!!!  Tomorrow I will ring the bell at Siteman officially marking the end of my treatment.  My doctors have no guarantee what is to be expected in my future, but I plan on ringing that bell tomorrow to announce that I am done with chemo FOREVER!

It’s coming to an end.

For the past couple of weeks I’ve been having cancer dreams.  Not exactly sure why, I really do feel indifferent about my soon-to-be life after cancer.  Although it is a big deal to some, there are support groups just for those who need help coping with the fact that cancer is over.  Yes, it sounds very strange, something you’ll never understand until (A) you have cancer and (B) you win.  Let’s hope A never happens to you.  But if it does, I sure do hope you get to B.  

Last week I had a dream that my cancer came back.  I was in a different hospital with beds lined up in a row in what could have also been an airport terminal.  My friends were there, but too far away and they didn’t have time to visit.  My sister was there, but kept leaving me.  I made friends in beds nearby, but after time they all stopped talking to me.  The doctors who were doing my testing couldn’t look me in the eye because it was such bad news and they didn’t want to have to tell me.  Then the guy a few beds down from me had his legs amputated and his bandages were bleeding through.  The woman next to him yelled at me for complaining when I looked totally fine and that guy was bleeding.  The dream ended with me crying all alone in my hospital bed.  HOW HORRIBLE!!

In another dream from earlier this week I was going through testing again but I didn’t need it because I already knew it was back.  All the patients around me were standing with their poles wearing long colorful gowns, sad for me.  But I was cheery and continued to reassure them that it was all going to be okay. 

In last night's dream my friends were all in a party house attached to a cancer wing.  I was sneaking back and forth between the party area and the cancer wing.  The party house was designed with wood texture, filled with tons of people, trendy furniture, and a rooftop party that never ended.  The people in the house continued to remind me I needed to take it easy and rest.  The cancer wing was a very pale cream, blue, and yellow overloaded with cancer patients.  They were all much older than me and looked much sicker.  I was the youngest one there.  They nurses were complaining that they were understaffed and needed more help.  Every minute another patient died from a stroke so I was going from room to room helping the nurses.  I had cancer, too, but since I was alone and looked healthy they were going to wait to treat me.

I’m not sure what’s up with my subconscious?!  There have been too many all similar to these lately.  I do know for sure that I’m looking forward to being done with ANNOYING side effects and regaining my energy.  I’ll figure out what my brain is trying to tell me once I’m really said and done with treatment and my post-treatment tests.  I do my first set of scans 6 weeks after my last treatment.  It sure will be the best Christmas present a girl can ask for!

It was one of those mornings!

I’m actually a rare breed who looks forward to Monday’s.  I love seeing the kiddos refreshed and ready for school.  Their happy energy gives me an extra pep in my step.  But thing is, they already wore me out on Sunday, so Monday was suddenly a different story!  I spent Sunday morning at school with my families sprucing up our school yard, something we do a couple times a year; it was nothing new to me.  But coming home for lunch and feeling 100% exhausted was!  I am not made for physical labor these days.  I spent the rest of the day on the couch.  I made a trip to Target in the evening and then found my bed.  It wasn’t just the exhaustion as much as it was my numb fingers that were bothering me.  My hands are staring to struggle again.  I have achy fingers with the once again non-string cheese opening fingers.  Yard work definitely strained my hands more than I had expected!

So there I am Monday morning, wiped out, dragging, trying to get myself together for an unusually early morning at school.  I pride myself on being up and out the door in 15 minutes before school.  That was not so much the case on Monday.  As I was getting dressed (with clothes picked out the night before) I notice my fingers are still numb.  Eh, no biggie, I’m getting use to this fact with life these days.  But then I found myself in a predicament; I couldn’t zip my pants.  Yes, they are a big snug from the weight I’ve put on, but come on, they aren’t that tight!  My fingers weren’t strong enough to pull the zipper up.  I’ve created new calluses on the side of my index knuckle as well as the skin in between my thumb and index finger from discovering new ways to open things.  But neither of those worked.  I found a hook and pulled my zipper up that way.  But then CRAP, I could not get my pants buttoned.  I tried every position possible but that damn button was not going in the hole.  My fingers no longer have the skills to push a button through a hole.  So solution?  Find new pants.  ARG, this is so making me late.  I found pants with a button that didn’t stand a chance to my weak and measly fingers and finally made it to school.

School was actually great, packed with a Grandparent Breakfast, playing in the rain, and happy-go-lucky children.  But come nap time I hit a wall and wanted so badly to curl up with them.  Many times I do in order to get some much needed shut-eye during nap time, but I was afraid if I took a nap it would make me feel even more groggy.  So I pushed through like I do best and found myself in bed at 5:00 after school.  My fingers and I were beat!  It was definitely a frustrating day, but of course no real complaints.  Lesson learned: invest in more leggings!

Addicted to Grey's Anatomy

Over the summer I found myself sitting down to lunch on the couch watching reruns of Grey's Anatomy on Lifetime.  I was quickly addicted!  I'm halfway into season 6 and I can't turn it off!  Bailey has me laughing all the time, Izzie and Denny have me in tears, and Meredith needs to get over the fact that life gave her lemons and make some freaking lemonade, not drown in it!

Season five had me reflecting a lot as I watched Izzie battle cancer.  She was surprised to realize how hard it was to not just make the appointments and go through initial testing, but to tell the people who she loved that she had cancer.  I remember that was very challenging for me as well.  It's almost like you feel the need to tell everyone in your life or else you are living a lie.  But who runs around shouting, "I have cancer"?!  You never know how people are going to react.  Will they burst out in tears?  Tell me about their friend's cousin's grandpa who had pancreatic cancer?  Or say the most horrible thing cancer patients dread, "Everything is going to be okay."  Well I know it's going to be okay, but right now it feels like the whole entire world just collapsed so feel some grief with me please!

During treatment Izzie was up out of her bed trying to keep her mind off of the cancer world while the world around her continually told her to get back in bed and rest.  She didn't realize they were right until it was too late and her body rejected her choices.  Hmmm, I'd say I'm currently experiencing that one!

At the end of treatment Izzie received good news that she was through the hard part; and it hit her like a brick wall.  It's so strange, that feeling when treatment is over and it's time to move on with life.  I focused a lot on it last spring in a post when I reentered remission.  I think that since I've been sitting on this remission cloud for the past 8 months I couldn't be more ready to move on.  I act normal, seem normal, and look normal that I think everyone around me has checked out of the Mel-has-cancer world, too.  The first half of this drug I had so many cards and frozen meals coming at me I was overwhelmed with love.  Now a days I'm usually asked, "How many more?" like it's no big deal since I've been on the drug for so long.  Eh, I guess it's kinda not.  Although deep into the hangover last week I would have argued that, ha!

It's nice having a show where I can check out of the real world and get wrapped up in the crazy drama of Seattle Grace Hospital.  MUCH better than Barnes Hospital :)

Too tired to be thirty!

Two weeks ago today I turned 30, how did this happen?!  It's amazing how fast time flies when you're having fun.

I wish I can say I enjoyed the last day of my 20s doing wild and crazy 20-something things, but instead I was in bed before 7 watching Petty Woman and playing a game with myself called, Guess that Jelly Belly Flavor.  At least I keep it entertaining.

On my 30th I enjoyed a nice dinner with Amy and Krissy and followed up the celebration that weekend with my besties partying like it was 1982.  Sad to say, I had more fun getting ready and seeing everyone's outfits instead of the actual party.  I made it about an hour before I started to get sick.  I knew earlier that day that I wasn't feeling the greatest but I knew I could push through because it was MY party.  Well, at least I thought I could.  My partying days have dwindled over the past couple months, but don't worry, I'm not blaming it on my old age - it's the damn chemo!  So after getting sick for the 4th time I was beyond emotional and sought out Amy and Krissy to get back home.  I was embarrassed and disappointed to be leaving my own party by 11:00.  But for the time I did spend there I had an absolute blast :).

Since then I've had A LOT of down time and have been making it a point to be in bed by 8:00 if at all possible.  My body has been on chemo for A YEAR AND A HALF.  That's double a pregnancy term.  It's just one semester short of all of middle school.  It's the same amount of time it takes a child to learn how to walk AND talk.  It's a LONG time!  I was telling my doctor last week that I feel fine, I'm just tired!  And not necessarily sleepy tired, but just-want-to-rest tired.  She stated that it's quick to say, "Oh, you should not feel too affected from this drug." because the medical side effects written on paper are not that bad in comparison to other chemos (hair loss, lowered counts, feeling like death, etc.).  But she agreed, it's been a long time and as soon as treatment ends I should start bouncing back to my normal self.  THANK GOODNESS because I miss my pep!

I'm really just ready to not feel tired!!  The kiddos this year are extra needy and energetic making me extra crabby, ha!  Between the kiddos and medical bill collectors I've lost a lot of patience.  I've also lost a lot of motivation.  This physical drain I'm feeling was getting to me mentally.  So I'm trying to make baby steps to keep my pep going.  I have to do lists of fun things to craft and keep me going.  But then finding the motivation to do any of it throws everything off and I find myself in this slump again and not leaving the comfort of bed.  Oops.  I'm jumping back on the pinterest wagon and finding fun recipes as well projects for the kiddos as my motivation to stay out of bed.  I'm looking forward to my rather full weekend ahead of me filled with fun and relaxation.  Then next week I'm getting my ass back into yoga to help this mental slump!

So there has to be good in this lethargic-ness somewhere because I always try to find the good in it eventually.... well the good is NEVER TAKE YOUR HEALTH FOR GRANTED.  It took 4 days in bed last cycle to really feel like myself again which was physically needed but mentally draining.  Well, I have more good - only ONE MORE TREATMENT and this tired nonsense will be a thing in the past. 
Woooo hoooo, come on treatment #16, it's time.  It's time to be DONE!

ONE MORE TO GO!!!!!!!!!

This time last year my doctor was discussing the possibility that I might have to stay on chemo indefinitely as maintenance for my tumors.  THANK GOODNESS my tumors stopped responding to that treatment and my new, life-saving BV was FDA approved.  Because now my doctor is hugging me as excited as I am that we are finally at the end of this incredibly long road.

Treatment 15 went smooth because after all I've been doing this for TEN MONTHS now and I've got it down :).  The nurses are learning that my veins are petite and are now getting them on the first try (although this last treatment she seemed very nervous that the vein she got was going to blow.  She spoiled me keeping my arm wrapped up with heated blankets to help the pain).  From start to finish I was a rockstar, so excited to make sure everyone knew that the last time was the last time!

Labs where a quick in-and-out as well as waiting for my doc.  I really do love being at the end of the day and flying through the waiting process.  My doctor once again first wanted to hear all about my 30th bash before we got down to business.  So after pictures were passed around the room (which ended up happening a couple times because of course my fellow had to stop by and hear the party details) we chatted like school children so excited that I am almost done with treatment.  My fingers and toes are still numb, but not in pain so she is still very pleased with that.  We scheduled next time's appointment earlier in the afternoon so she can scoot out in time to take her kiddos trick-or-treating.

Treatment goes by so fast these days, it's quite nice.  I'm there for about an hour total and there is always a nurse stopping by for a convo.  There is a lot of laughter around us during treatment, sometimes it's hard to keep it calm for the patients around us.  Although the patient next to me last time was a retired fire chief who was more than loving sharing his old stories with us.  When first arrived at treatment there was a woman receiving a push of Adriamycin (made me want to throw up on the spot remembering my days of that horrible drug) and she was quietly talking with her nurse.  I noticed the nurse was crying from what the patient was telling her.  The patient was soon done and on her way out the door to ring the bell - she just received the great news that her tumors were shrinking.  She left in tears of joy, inspiring the rest of us to keep holding on to our hope.  That nurse later told me and Krissy how thankful she was that I was one of the last patients of the day because it's always good to end the day with good spirits and laughter.

After treatment Krissy and I stopped by Quiznos with some gift cards and pretty much ordered one of everything off of the menu.  I sat on a stool continually adding items to our order as Krissy was ordering sandwich after sandwich to our new bff, the Quiznos sandwich maker.  I looked tired, I wasn't making the most coherent of sentences, and standing without swaying or wobbling was rather challenging.  So Krissy kept me on my stool as she and our new bff took care of our order that could have fed a basketball team.  If you didn't know any better you would have thought that I was drunk with an enormous appetite!  Nope, just some chemo with some very nice pre-drugs :).

The hangover lasted the full 2 days so I spent an extra 3rd in bed - it was very nice!  I did not leave my home for 4 days - craziness!  I did a lot of catching up on my Grey's Anatomy, I made it through 2 more seasons.  Now I am just eager to get through the next 2 weeks and be done FOREVER!!!  It's so close now, I. Can't. Wait!

Who's the bravest of them all?

On my birthday last week my sister posted, "Happy 30th to my beautiful, bubbly, brave sister!!!" (btw, she is an anti-exclamation mark user.  She made a point of exaggerating her exclamation in honor of me, ha!)  With that she posted this adorable picture of us, probably taken 25 years ago.

 

 

Me, Krissy

It got me thinking... The beautiful and bubbly I'll take, but the brave?  What does one really have to do to be considered brave?  Am I really brave?  When the roommates are out of town and I am spooked at night I'll lock myself in my bedroom.  When I have one of those falling dreams I wake up out of breath, scared trying to clam myself down that in fact that I wasn't actually falling, but dreaming.  At the end of the month I get scared that I might bounce a check before I get paid again.  I'm really like everyone else...

According to Merriam-Webster brave is defined as having or showing courage.  To me, courage means being strong and having the might to get through a situation.  I didn't look up what Merriam and Webster had to say about courage, but I'm pretty sure I have that one down these days.  Going through cancer is tiring.  Physically, mentally, emotionally, and financially.  It is exhausting.  It wears me down so much I want to cry, but I find that might somewhere deep down inside that says "you can do this."  And then I hold on tight to that little flame of courage and push through what ever obstacle stands in my way, weather it be dealing with the Barnes billing department or the Siteman nurses digging in my arm for a vein. 

Everyone has something to be brave about in their lives; pushing through your first marathon, getting that promotion at work, making it to your desk without the boss noticing you're late.  My type of brave is just not experienced as often (thank goodness, right!).  

So okay Kristin, I am brave.  Thank you for the reminder that even though I'm losing patience and strength at the end of this horribly long road, I will get through this.  And thank you for also being brave, because without a brave caregiver I could never be a brave patient.  Looks like we both leaned that from mom. 

10,000 Strong

I started this blog in April of 2011, just weeks after I relapsed.  I had become a broken record repeating the same info to all of my friends on the phone.  Now don't get me wrong, I am grateful and humbled by the attention and love from my friends.  I truly feel special and loved.  But it was hard keeping up with everyone!  Enter Holding onto Hope.  I had intended for it to recap my latest doctor visits and let the girls know I was feeling okay.  Today it serves as so much more than that.  Besides fulfilling my need to let it all out, I am honored to be called an inspiration to others who walk beside me during this journey.  I've let down my guard and became honest with my journey.  Really, there is nothing to hide.  Now yes, I have spared you many gross details.  But the emotional and mental journey that is included with the physical pain is sometimes more intense than the chemo itself. 

At some point this summer my blog reached 10,000 views from all around the world.  I can't believe it.  I understand that some blogs reach that in a week if not days.  But I'm a 20-something (for a couple more days), HL relapsed, St. Louisan who is just sharing the latest and greatest about my journey.  Those of you who have reached out to me via email sharing your own stories and looking to connect have touched my heart.  I find it hard to believe that I have such a strong following.  Thank you for listening to my story and letting me vent a bit.  I appreciate all of your kind words and the never ending support.  It is the support that keeps me positive and strong.  I am a true believer that my positive attitude has been a huge reason for why I am in remission and still alive today.  So for that I thank you; thank you for helping me win this battle. 

Meltober!

This is it!  This is MY month!  In just a few days I hit the dirty thirty mark - omg!  Then I end the month with my new favorite day - Oct. 31.  No, not because it's Halloween, but because it is my LAST TREATMENT EVER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  I can't believe it's all finally here.

It's been a month since my last post, my apologies.  I slightly over did it there with treatment 13 and not resting enough, I ended up getting really sick on Labor day not moving from bed, then missing Tuesday at work from my body hating me.  Lesson learned!  During treatment 14 I made sure to spend A LOT of time in bed!  Since my last post I've been to Seattle for a remission/ early birthday present from my good friend Curt.  I was the maid of honor in my bff Toni's wedding.  I spent a weekend in bed recovering from #14 and now just spent the last weekend making a quick trip to Savannah helping a friend get settled into a new home.  Whew, no wonder I'm so tired!  But I'm happy :)

Treatment 13 was a smaller dose making the neuropathy SOO much better.  They lowered it for this reason; my hands had become absolutely uncomfortable to use.  It got to the point that I wasn't sleeping due to the pain, I was even having to concentrate when holding onto the steering wheel - if I didn't focus on squeezing it I suddenly wouldn't be!  Treatment 14 was also a smaller dose and it looks like we're going to carry on this smaller dose stuff till the end.  My hands are so much more tolerable.  I can do things like zip my pants, press buttons in my car, tie shoe laces, and pick up change off the counter without my fingers cramping up frozen in pain.  So wonderful!  I can even open string cheese again!  My fingers are still numb, but not in pain.  My toes on the other hand are still pretty numb.  But that's okay, I don't need them for cooking or typing. 

I will say I am without a doubt exhausted.  I am always tired.  Despite the craziness my weekends have been the past month I've been playing it rather low key.  In Seattle I spent probably 65% of the trip in bed.  It was a luxurious bed with a phenomenal view of the city so I did not feel guilty one bit.  My peppiness is lacking some and my will to care about much has dwindled as well.  I'm not mentally depressed, but my body is physically depressed.  I have no drive to do anything after school but rest.  I guess it makes sense, I've only been on chemo for a year and a half now!

What is seriously depressed in my wallet.  A year and a half of treatment has made me more broke than I ever imagined I could be.  I'm dealing with more financial issues than I did the first time around in my early 20s.  But I'm not eligible for the assistance I was then making this solely 100% my responsibility.  Truth be told, I haven't been all that responsible.  The bills got to the point I would cry every week when I sat down trying to manage it all so I gave up.  Well what I learned from that naive move is that even if I ignore them, they keep growing!  Huh, who would have thought.  I'm officially buried under Mt. Barnes.  I'm meeting with my great friend Curt, attorney/accountant to help me dig my way out.  There are 2 things that I dearly love in my life: my car and my job.  Unfortunately, it's looking like I cannot keep both.  Maybe just one?  Hopefully.  Now that I'm entering into the world of 30 it's time to be a bit more responsible financially. 

Rereading that last sentence makes Mt. Barnes just another bump in the road.  I get to enter my 30s in just days.  There are hundreds of thousands that didn't make it to their 30th birthday.  I'm tired and I have debt up to my eyeballs.  But I'm alive and here to experience it - the best 30th birthday present this girl can ask for.