And the tumor roller coaster continues

It's been 4 days since my doctor's appointment, and I have yet to figure out how to put it into words.  I have kept myself busy, not taking time to reflect on the latest news.  But it's time to face the facts.  So maybe I'll start with those... the facts.

On Wednesday I received the results from my Monday scans.  They were my 3rd round of scans since I started chemo.  The first time we saw shrinkage - awesome news.  The second time, they were simply stable - no growth or shrinkage.  My doctor expected this to occur both times - it's a typical pattern for my drug.  This time, our hope and expectation was for the tumors to continue stability.  Unfortunately, the tumors have increased in size.  Even though we are disappointed about the growth, it was not a significant increase, so she is not very alarmed.  They have to grow a certain amount for me to no longer be eligible for the trial.  Fortunately they have not reached that undesired size.


I am at the 6 month marker of my trial.  At this point, doctors usually decrease the dosage amount (to make the side effects easier) and move scans from every 2 months to every 3 months.  But with this annoying growth they are sticking with the same dosage and will have scans again in 2 months... Merry Christmas to me.


My doctor continued to explain that this occurs to some patients on my drug.  It's a roller coaster - some months they grow a bit, other months they shrink a bit.  So we are not going to jump to any thoughts or conclusions until we rescan in December.  If they grow more, I have options of other trials to try (unfortunately, not as amazing as my one-a-day pill).  But if they shrink (pleeease shrink!) then we know my drug just enjoys roller coasters.  Funny, I've never been the roller coaster type. 


Icing on the cake.... before I even met with my doc and got the news, I met with the study coordinator about some new paperwork I needed to sign (I have already pretty much signed my life away to this drug company that's keeping me alive).  This time, I was informed that they now have research proving that this chemo drug - get this - causes cancer.  Seriously!?  So the drug that is keeping my cancer from growing, potentially will cause more cancer in my future?  Awesome.

I'm not upset with the news of my scans, but obviously not overjoyed either.  I've avoided talking about it...  Mainly because there is nothing to talk about.   I don't focus on the negative and definitely don't like to dwell on it.  I was really hoping for stability, and that I could start some sort of routine with this whole cancer thing.  I guess my cancer routine is just going to include no real routine at all.  I'm hugely disappointed.  My tumor size is jumping all over the place on this damn roller coaster.  I have NO idea what is to come with my next scans, but wondering and worrying about it will get me no where.  There's nothing I can do about it so I'm just going to do what I do best - enjoy every day as it comes and live life to the fullest. 

Cancer Sucks. Let's Wine About It.

Cancer sucks... sometimes it's not so bad, but overall, it sucks.  And wine... well, who doesn't like wine?!  If you know anything about my Kirkwood girlfriends and me, you can often find us together at the condo unwinding with a glass (or two!).  So it was only natural for my roommate to bring up the idea of having a fundraiser for me involving wine.  This was discussed in early summer, and I do believe over a glass of wine!  Some time after, Sarah and I were having dinner (enjoying our wine as well) and she asked how I felt about her planning a fundraiser in my honor.  Well.... I don't know.  Of course I'm greatly flattered, and it does sound like a lot of fun.... but very awkward as well!  I've been to benefits for others, including a couple for my mother when she was going through treatment.  It never once felt awkward being a guest at benefit, if anything I always have enjoyed myself and being able to provide support in one way or another.  I took a lot of that into consideration and agreed to Sarah's request.  She, Kuhn, and my sister got the ball rolling and set the date for early fall.  Funny, this all was discussed months before my Chicago trip and my surprise benefit there!  Seriously, I am beyond blessed in life.

The night was fantastic.  It started with one of my besties, Berlin, who came over before the benefit.  We had our own mini happy hour while I got ready.  Then we were off to Grapevine Wines in downtown Kirkwood, filled with anxiety and excitement.  I was so eager to see how everything panned out as well as visit with everyone attending!  The moment I entered the door I was greeted with hugs and smiles... and that was pretty much how the rest of the evening continued!  Girlfriends, sister's friends, high school friends, college friends, parents of friends, parents of my students, family & family friends, childhood friends, work friends, friends of friends, and newly made friends were all in attendance.  It was very surreal to stand back and see my entire life surrounding me.  There were representations from just about every grouping of people in my life.  It was an overwhelming feeling of love and support.

Grapevine provided a wonderfully fun tasting keeping everyone moving around socializing with one another.  I tried partaking in the tasting, but instead found myself socializing and enjoying the company of everyone there.  The raffle was fun as well - I was so entertained that I knew everyone who won, haha!  And my hair stylist, Dawn from Lather Hair Lounge, won one of the biggest prizes of the night!  And it was well deserved, she and the girls from Lather donated A LOT to the raffle, love you girls!  The best raffle of the night was, of course, a date with me!  UMMM, when I found out about this a couple weeks ago I about had a freak out attack!  Are they SERIOUS?!  Then I recalled after one of our evenings unwinding with our wine at home, Kuhn came up with the idea and I just laughed at it entertained with her comedy.  (Lesson learned, even when you think it's a joke, just say NO because laughter does not get the point across as well!).  The winner wasn't able to attend, but he made sure to stay in touch with Krissy until the bidding was over.  And he is quite possibly the sweetest guy I have ever met. Overall, the night was more of a success than I could ever ask for.

I came home that night beyond humbled.  All of these wonderful people came out to support me.  And for those who donated their time and efforts I will never be able to explain how grateful I am.  Lather, The Dubliner, BLUSH, The Soulard School, and Cafe Provencal all donated to the raffle.  My sister and roommate spent hours working out logistics for the event.  Sarah, the most selfless person I know, was the powerhouse behind the whole event.  She is truly one amazing friend.  Anybody is lucky to have a Sarah King in their life.

The night was a great success except for one small aspect... I have cancer.  I can shrug it off in conversation and no one would know.  But within 24 hours prior to the event I am 99.9% sure I fractured another rib.  This time on the left side.  It is PAINFUL!!!  All of the talking, laughter and hugs finally got the best of me by the end of the night.  My cough was worsening.  I was exhausted.  Sarah, Krissy and I were the last to leave and head over to the after party at Bar Louie.  I tried to continue to cover up my pain and exhaustion, but they saw right though it.  Krissy and I enjoyed only one round of drinks... and then she brought me home.  I was in bed by 10... on the night of my benefit... LAME!  I was absolutely bummed I couldn't stay out and enjoy my night.  But taking care of my body comes first... and so I listened to what it was telling me - REST!

Despite the pain, I still had an excellent time.  I socialized, laughed, cried, provided my appreciation, and felt like the luckiest girl in the world.  Funny, I have a terminal disease, but stemmed from this horrible disease I find myself full of complete happiness?!  It's amazing how cancer brings out the best in everyone.  Cancer sucks.  And I do whine about it from time to time, but I am so proud to be able to fight this disease with as much optimism I can muster.... optimism that I find from the support of all of the wonderful people who came out last Thursday.  Thank you is not enough.... it never will be.  But I am beyond grateful for every one of you.  Thank you for your support.  Because after all, it is your support that reminds me to stay strong. 

Week 27 on Chemo

I can't believe I have been on treatment for almost 6 months now!  How time flies!  Here's the latest....

Side effects: I think my body and the chemo for the most part have agreed to get along and are handling each other quite well.  The nausea occurs maybe once a week, the muscle pain is very minimal if at all, and my energy level is pretty much back to normal.  I've adjusted quite well!  I still have stomach issues now and then and some days I can't keep any food down (it has nothing to do with the nausea, just my body decides some days it doesn't like food - yeah, not cool because I love food!!), but that has calmed down a lot in the last few weeks as well.


Status of tumors:  I have scans completed every 2 months.  My first round of scans showed some shrinking - it was the best day EVER!  The second round of scans showed that my tumors were stable... not bad news, but not what I wanted to hear... but it was what my oncologist had expected to see.  My third round of scans are on Monday... starting to get anxious!!  I really really really want them to shrink and disappear... but, that's wishful thinking.  My oncologist and I are hoping to see more stability... but shrinking would be nice :)  THINK SHRINK!!!!!!!!!!!!!


My support system:  I could go on and on about my amazing caregiver.  She's the best.  If you haven't read it yet, read my post from last week.  Besides Kristin Jane, I have the best support from my girlfriends.  They are constantly checking in with me and joining me in my adventures while I celebrate life.  Katie and Bryan flew me to Colorado last month for a visit.  Amy was there immediately to bring me to the ER as well as take care of me and my home when I returned home a week later.  I received the most amazing surprise in August with a surprise benefit from my out of town besties, Lisa and Steph.  It was one of the most touching experiences, especially when JRob, Kuhn, Amy and my sister surprise-showed up - in Chicago!  And now this Thursday my roommate and bff Sarah are planning another benefit - they are so amazing.  No, I'm not broke (mainly because I refuse to drain my account every month for medical bills, I have a lovely payment plan set up :), but all my friends want to do is help.  I do gripe a lot about the never ending bills and the headache involved with my medical bookkeeping.  They've seen me struggle and although they wish they could, they cannot fix my cancer.  So what do they do?  What they do best... plan parties in my honor :)  I love my friends!! 

How am I handling these days?  Well, I'm not quite sure how to answer that one for ya.  I'm taking one day at a time.  My mini vacay in the hospital last month still has me a bit under the weather.  My lungs are still very uncomfortable when I sing, laugh, or squeal a bit too much (all 3 of which I do on a regular basis!).  My fractured rib hurts.  Sometimes I find myself exhausted only halfway through the day.  None of these are something to really complain about, but they all a result of having cancer.  And that's what gets me down...  I still have cancer, UG!  I know this is something I'm going to have for life, so I'm just hoping time will help cure that downer aspect of it for me.  I don't know how to be in a relationship, I have no idea how I'm going to have children while on chemo, and I have NO routine with my counts and this pill yet.  I've lost a lot of freedom in my life because of cancer.  So what happens?  I find the bright side of life.  I'm living life to the fullest, not wanting to miss a thing.  Time feeling well is very valuable to me.  I'm not sad, I'm not depressed (although some times when I'm dealing with the bookkeeping I find myself in a slump and complain to Kuhn until she shuts me up with wine and chocolate!).  I still have a lot to adjust to mentally, but fortunately that part of having cancer will heal... I just need a little bit more time. 


So how does it really look on paper?  I have stage 4 Hodgkin's Lymphoma.  Chemo treatments and radiation are no longer an option, my cancer is stronger than the medicine.  A stem cell transplant is a possible option if these tumors find themselves out of control.  But thankfully for the advances in cancer research and my wonderful oncologist, I am on a clinical trial of a non-FDA approved chemo pill that is stabilizing my tumors.  It's not a death sentence, just a different way to appreciate life. 

This Week's Best Medicine

So you've heard be talk a lot about the amazing caregiver, my sister Kristin Jane (or as the rest of the world call her - besides Amy & Katie - Krissy).  We are pretty extreme as opposites go, but I also don't know two sisters who are closer than us.  She's the first person to put me in my place when I'm being too much of a princess as well as the first person to come running when I'm in need.  She is one of the most giving people out there, someone who is also cursed with the mentality of GO GO GO GO GO.  She's a bereavement counselor for teens with Annie's Hope.  She's a big sis with Big Brothers Big Sisters.  She's an executive member of JBoard (I have still yet to figure out what she does there).  And she has the most eclectic groups of friends... some of which she hides from me because I am just too good at embarassing her :).  She is witty, intelligent, silly, sometimes too knowledgeable, and the most important person in my life.  We fight, we cry, we bicker, and are VERY good at getting under each others' skin.  In true sister style, we can only be together for so many days until we become catty.  But the same goes for only allowing so many days in between our times together. 

Ever since my (well, our) mini vacay at Barnes a few weeks ago, she's been playing catch-up at work and has yet to win that battle.  She's prepping for a big trip to... Brussels?  I'm so good at not remembering details like that.  Well, last year it was Japan, I remember that!... for a few weeks for work.  Needless to say, she's bombarded at the moment.  She sent me a picture text two days ago of a GORGEOUS bouquet of flowers that were sent to her at work.  It had a sweet note attached thanking her for her support... with no signature.  Wish I could take credit for that one!  We are unsure who it came from, and what they are thanking her for (yes, she helps so many people out there).  Our final guess is that it is from a family member or friend appreciating her selflessness when it comes to my illness.  Maybe it is, maybe it isn't.  But it put a smile on her face.  And a smile on my caregiver's face is a smile on my face.  Best medicine of the week.  Thank you for taking care of my sister while she takes care of me. 

Celebrating another year of life!

Why, hello 29, nice to meet you! 

I decided on Tuesday that my kiddos have zero appreciation for birthdays.  Don't get me wrong, they sang "Happy Birthday to Wissa" alllllll day long.  To the point where I had to stop them.  But that was about as good as it got with them!  I'm not sure if they all just called each other the night before and made deliberate plans, but they all came in crabby.  I was also having chest pain so throw that into the mix as well and soon enough I was crabby too.  I found myself laughing out loud eventually because of the ridiculousness.  All it took was a Dove chocolate wrapper during nap time that read, "Enjoy this moment" to help me push through the day.  I looked around and watched the angels as they napped, so precious, peaceful, and QUIET!  Yes they were crab apples that day, and I was crabby from feeling like a baby elephant was sitting on my chest all day, but the point of it all was I was there.  Not in the hospital, not sick in bed, but able to spend my birthday doing what I enjoy best.

I had an evening planned with my besties at our favorite wine bar and if it wasn't my own birthday, I very well might have called and canceled!  I was getting ready after work wanting to put on pjs instead of make-up.  I texted Sarah and told Kuhn we were leaving in 5 minutes because I needed time to sit and whine with my wine before everyone showed up to celebrate!  Isn't it funny how such little things can get under your skin and even though they aren't a big deal at all, they somehow grow into a mountain and you feel like your world might just end right there and then?!  I've been overwhelmed and playing catch-up ever since my mini-vacay in the hospital.  I HATE organizing my medical statements and bills, making sure they are going through insurance properly, etc.  I REALLY HATE my to do list that only grows and does not seem to get a whole lot crossed off these days.   And I EXTREMELY HATE putting away laundry.  It is seriously the worst thing in the whole entire world (hahaha, actually, probably the feeling of death from my transplant was the worst, but laundry is a close second!).  My kids are rarely crabby, but I have found them to be my shoulder to lean on for happiness.  And on Tuesday they let me down... my birthday of all days!  No, it's not their fault - they are kids, I'm the adult.  I'm trying really hard with to work on my independence and not rely on others to pick me up.  I just didn't realize until Tuesday that they were what I was really using as my pick-me-up in life.  I guess I could have chosen worse!

The rest of my birthday night was a blast.  It true Greenbriar style, Kuhn, JRob, and I continued our celebration late into the night and enjoyed every bit of our company together.  The three of us were meant to be together at this stage in life right now, and we recognize it often.  JRob put it frank that night, I just need to get over this hurdle in life.  I've accepted cancer as a part of me for life, but I just need more time to adjust with it.  When she said that, I pictured going to Bryan's cross country meets and watching him fly over the hurdles when we were in high school.  It didn't happen often, but every now and then a hurdle would be knocked over to the ground.  I feel like that is where I am right now.  As soon as I feel caught up and ready to jump it, I just knock it over again. Annoying.  Looks like I just need more time.... or longer legs!

It's my last year of my 20s, and I so grateful to be here to enjoy it.  Hurdles, crabby children, never ending laundry, and medical bills will always be annoyances in my life.  But at least I get to be a part of it. 

Looking forward to celebrating another year of life :)

Good Medicine vs. Not So Good Medicine

I think some people get confused about what's the bigger pain: the cancer or the chemo.  As far as medicine goes, chemo is pretty extreme.  Now granted, if I wasn't on chemo the cancer would eventually take over, and well... sad day.  But honestly, the cancer does not hurt.  I have no pain from it - I would still not know to this day that I relapsed 6 months ago... so a big thanks to my wonderful oncologist who has kept me under good observation!  The chemo is saving my life, but yes it does have annoyances.  It got me thinking... there are a lot of "medicines" in my life.  And I credit them all to be good, but with the good there does come some not so good...

Visiting my two oldest friends in Colorado two weekends ago...
The Good:  Katie, Bryan, and I grew up on the same street (as well as many other Carman Kids who we are still besties with), but they moved away from the rest of us when we graduated college.  They are one of those fairytale stories you hear about... They started dating when we were 16 and today have a beautiful six month old daughter.  Lucy is beautiful and some of the BEST medicine I could ever ask for.  Her giggles are beyond genuine.  Bryan had a plane ticket that was going to expire in a few weeks and unfortunately he and Katie could not work out the logistics to use it for a STL trip to visit fam.  So what do they do?  Call up their oldest and favorite friend to come visit :).  I flew up there the weekend after I returned home from the hospital.  It was EXACTLY what I needed!!  We napped, enjoyed some great food, took a beautiful drive in the mountains, napped some more, watched some old school Nickeloden, had a popcorn party with Marissa, continued with naps, made an apple pie (with apples from their backyard - so cool!), went shopping, and got in another nap.  Bryan and I do love our naps!  I loved every moment of my trip and still find it hard to believe that two of the closest people in my life live so so so far away.  Before my final departure I brainstormed ideas of how I could sneak Lucy onto the plane with me... Unsuccessful. 
The Not So Good:  I have been to Denver many times in years past and have NEVER had an issue with the altitude.  But I have also never been up there while recovering from pneumonia.  My lungs and the fresh mountain air did NOT agree!  Just getting out of the car in the mountains to take pics with Lucy caused me to lose my breath!  Geeze!  But it wasn't just the annoyance of trying to breathe, the lack of oxygen increased my cough.  My increased cough re-injured my not quite healed fractured rib from my summer infection (which I first acquired from coughing.... yes, coughing). 

My children from school...
The Good:  You've heard it enough, I'm pretty much obsessed with my job.  These kids keep me smiling and laughing all day!  They are so pure and innocent, a true breath of fresh air.  I love them individually for such fascinating characteristics as well as adorable quirks!  Just last week I was sitting on the floor with a student who was sorting colored objects when a child 15 feet away in the library looks up from her book to say very matter-o-factually, "Missa, I really love you." Priceless.  But my favorite story.... Last year a child of mine had an injury on her hand.  She sat in my lap while I held an icepack on her hand.  As minutes passed, the ice pack warmed and her tears and pain disappeared.  She continued to sit in my lap and play with the ice pack.  While squishing the melting pack, she took notice of my chest.  She looked at my chest, then at the icepack in her hands.  Back at my chest and back to the icepack... then took the ice pack and placed it on the 6 year old port scar on my chest.  Pure innocence; her remarkable compassion still makes me tear up today.
The Not So Good:  I have taught them very well how to take turns and share... unfortunately too well.  They are the source of the germs that caused my week long stay in the hospital.  Oopsies.

My social life....
The Good:  I am sooo blessed to have sooo many friends!  I book myself daily with movies, dinners, happy hours, dinners, trips, brunches, hanging out, dates, and events.  I love every minute of my busy live-it-to-the-fullest lifestyle.  You remember that Tim McGraw song, Live Like You are Dying?  Well that's me.  I don't actually push myself to live life to the fullest, it just happens naturally.  I just don't want to miss out!  And that's not just with cancer, Kuhn, JRob and I had a very social Winter 2010 :)
The Not so Good:  I'm tired!!!  It's hard to balance fun with my need for rest.  Working on that one...