What is chemo? Mel's Treatment Diary

It's funny when I tell people now that I'm back on the "real" chemo.  I'm pretty sure only 30% of people I talk with have a real understanding about chemotherapy.  It's not just one drug.  Chemo consists of over 100 drugs, and every drug has it's own name.  I have been around the block enough to have received about a dozen of them.  I am currently on just one chemo drug.  I am back with the majority of patients receiving chemo through an IV.  Some chemos are simply administered through a shot or pill, which I was lucky enough to try out for 9 months.  Some chemos need to administered more specifically into the body including a spinal tap (ouch!).  I've included the last 8 years of my chemo history to give you a bit of understanding about how chemo works, and how it affected me directly.  This is insanely long, so also simply check out the links I provided throughout and at the end of this for more info!

Here's a bit of my chemo hisotry:

When a patient is first diagnosed with Hodgkin's Lymphoma, the protocol is the chemo cocktail ABVD.  Chemo cocktail?  Right up my alley!  Most (if not all) chemos are abbreviated because their names are close to impossible to pronounce let alone try to remember!  ABVD stands for adriamycin, bleomycin, vinblastine, dacarbazine.  (And if you are at all familiar with adriamycin, all I can say is UG!)  BVD was infused from their individual bags over several hours.  The adriamycin was administered as a push in a giant syringe which took only minutes.  The iv machine could do it, but I had the nurses push it so I could receive breaks from losing my cookies!  (just thinking about that giant red tube makes me feel nauseous!)  I was on ABVD for 8 months receiving treatment every other week.  That was back in 2004.  Total treatment time for all 4 drugs was an afternoon.  Not amazing, but not bad at all.  As for side effects, I lost my hair and was completely nauseous.  Although I found a quick treatment for my nausea (I did not care for the nausea meds provided by my doc) - I indulged in food.  Food was my best friend helping me to feel better physically and mentally.  I gained about 30 pounds by the end of the ABVD treatment.  The other big side effect was fatigue.  I slept for about 48 hours straight after every treatment; I called it my chemo hangover.  Think about your worst case of the stomach flu on top of your worst hangover... that's a chemo hangover.  It only lasted days, and by the end of the week I was energized enough just to do it all over again.  I was permitted a handicap sign for my car so I could park as close to every one of my classes on campus - the fatigue was pretty bad.  I look back at how strong I was not letting cancer take over my life as a college student - damn I impress myself! 

My tumors did shrink during the treatment as expected, but unfortunately they were stronger and started to grow again towards the end of the 8 month protocol.  Hodgkin's Lymphoma patients have over a 90% success rate with the ABVD so this was surprising and disapointing considering my age (21).  The amount of treatments that every patient receives is different depending upon the stage of the cancer.  I was only in stage 2 at the time.  Since the ABVD failed at putting me into remission I had to move back to St. Louis for more in-depth treatment.

Next on the chemo list: ICE.  Sounds pretty cool, but totally deceiving!  Ifosfamide, carboplatin, and etoposide had to be administered in the hospital for a 3 day span.  The chemo itself wasn't so bad, but the bags took FOREVER!  I was on chemo for about 60 hours straight - that's a long time to be attached to an iv pole.  This was administered 3 times over a 9 week span (Fall 2004).  

Now this is where I learned that chemos are used differently.  The point of ABVD was to rid of my cancer, although it did not work.  The ICE treatment is not used to rid of tumors, but to prep the cancer cells for a total clean out that will soon occur with high dose chemo (yes, it is much more scientific than that, but even if I wanted to, my chemo brain couldn't even begin to get into the technicalities of B-cells!).  I lived the cushy life as a cancer patient in the hospital for 3 days at a time.  I wasn't ever in pain or sick, just nauseous, so I stayed strong and let the whole world spoil me :)

I took a few weeks off after ICE and rested (and took many trips to Mizzou and SMS to visit friends when I was feeling better).  This allowed my body (and mental health!) to become stronger for what was about to occur: my trasnplant.

Now, the misconceptions about my stem cell transplant...  It is not a bone marrow transplant.  My cancer has not spread to my bone marrow (which was most recently tested last spring and is still clean!).  Although it is similar...  Stem cells are in your blood and are the creator for everything else in your body.  The reason for the transplant was to allow my body to recover from the high dose chemo.  High dose chemo is the queen bee of all chemos. Unfortunately, I do not have the memory or research of the exact drugs I was on at the time.  There were a handful of them and their doses were rather lethal.  But they were strong enough to kill my tumors so it was a risk we had to take.  I was admitted to the hospital for about a month for this all to take place.  It took about a week duration for the different drugs to be administered.  Every day I became weaker and weaker.  I then spent time being lifeless just laying in bed letting the chemo work it's job on the tumors.  The issue with chemo is that it cannot be controlled to only kill my cancer cells; it all kills all of the good cells as well.  While my tumors were dying, the rest of my body was slowly shutting down.  I do not remember much about the time in between the chemo and transplant, I believe I slept through most of the week.  It was painful and miserable, talk about a chemo hangover!  When enough time passed for the chemo to destroy the cancer but not my organs, it was time for the stem cell transplant. 

Weeks prior to this I harvested my own stem cells.  My blood was pulled from my body through one catheter (my port), sent through a giant machine that I referred to as Snuffelleupagus, and then returned to my body through a different catheter.  While my blood stopped through Snuffelleupagus, my stem cells were extracted and saved for my transplant.  And now it's time to brag... this process is referred to as pheresis.  Pheresis can take a couple days up to a couple weeks to get enough stem cells collected from your blood.  There is no rhyme or reason to it, but extracting stem cells from blood takes different amounts of time for every patient.  Determining my health factors, they figured about 3-5 days for me.  And yes, you are stuck hooked up to this machine ALL DAY.  Well, I made my way into the Barnes book of records - I completed pheresis in ONE DAY!  While the rest of the people my age were trying to ace their mid-terms, I was dominating pheresis :)  I do believe when I received the amazing news in my hospital room that night I jumped on my iv pole and began riding around shouting, "Pheresis ain't got nothing on me!"

Back to the transplant - After about a week of observation, it was time to replace my stem cells and let my body heal from the high dose chemo.  Stem cells are administered like a blood transfusion, but it doesn't take as long.  It made me sick and created yet another awful hangover, but within days my body began to regain strength and come back to life.  By the end of the month span I was out of the hospital and back in my own bed.  I had a home health nurse take care of me daily until I was ready to reenter the world about a month later!

Lastly on my trip down treatment lane, I followed up with radiation treatment.  I received it for about 30 minutes everyday for 30 days.  This occurred about 2 months after my transplant.  The radiation was aimed on my affected lymph nodes, preventing the from occurring once again.  Going into radiation, I was overweight.  Not horrible, but for being 5'4" 160lbs. is definitely over weight.  The radiation was directed to my chest where my lymph nodes/tumors had once been.  Radiation is like getting a bad sunburn, so my back and chest turned brown.  Also, my esophagus was affected from receiving a sun burn as well.  I was unable to swallow food by the halfway point of treatment because it was too painful.  My overweight body quickly became an unhealthy 115 lbs. due to starvation.

It took my body about a year to fully recover from all of the treatment.  It needed to regain nutrients and weight.  I was in remission and back in the real world.  Although follow-up scans never showed promising news.  My tumors grew primarily in my chest.  After all of the treatment was said and done, there was a tiny bit of "activity" in my chest.  It was not enough to be concerned about, but it grew about a hair's width every year so my oncologist kept a close eye on me.  I was in remission for over 6 years when I relapsed - the activity she had been watching finally grew significant amounts.   

Since I have already tried the ADVB treatment once ending with failure, it is not expected to work a second time.  Although a second transplant is still an option if my tumors do not respond to the chemos they are trying now.  When I was being treated in 2004 it was believed that the cancer was simply in my lymph nodes.  The doctors have learned from my relapse that the cancer is also in my blood.  The question I am asked most often, "Why don't they just remove the tumors?"  First, one of the tumors is in my lung - not easy to remove!  It's possible, but requires a lot of inpatient care.  It's dangerous and unnecessary since I am functioning so well with it in there.  The other one (possibly two) are just outside my lungs.  The actual tumors are not what is killing me.  The cancer cells in my blood can be carried anywhere to create tumors.  By watching my tumors shrink we know that the chemo is strong enough to kill the cancer cells in my blood as well.  IF the treatment they are trying right now does not work and we end up with another transplant, I will not be able to use my own stem cells - they are tainted with cancer.  Krissy will be the first one tested as a match.  And if she's not (cause really, what do we actually have in commom?! haha), then we'll hit up the donor list.  Then it'll be back to the hospital for the high dose chemo and transplant.  That is hopefully not going to be necessary!

Now that we know the lenalidomide pill did not work for the past 9 months since I have relapsed, I am on Brentuximab Vedotin.  It is an infusion, but luckily only a 30 minute drip.  The only big reactions I am having thus far is intolerance to some foods and bits of feeling lethargic.  I gained 15 pounds on Lenalidomide, mainly because I stopped any physical activity - I'm just too pooped!  I should have a bit more energy and am being forced to eat very healthy with BV so I'm hoping to get my body back into shape.  I have noticed a tiny bit of hair thinning, but luckily I'm not expected to lose my hair!

Since I have relapsed I have been very fortunate to have simple side effects.  The statistics are not looking so hot for where I am in the Hodgkin's process, but this new drug, BV, is providing some promising results.  

For more info, check out the American Cancer Society.  They are after all the Official Sponsor of More Birthdays.  Pretty damn cool if you ask me :)

I love this sight too .  Learn more about my specific cancer from MacMillan Cancer Support. 

Healthy Holidays

It has been a very BUSY holiday break so far and it couldn't make me happier!  I have a full 2 weeks off from school with one down and one still to go!  I jam-packed my first week with Christmas parties, nightly outings, dinners, happy hours, couch cuddling, and of course Christmas with the fam.  Although I think Krissy got her fill of me on Christmas, haha!  Christmas Eve included me "stopping by" Ronna's which turned into an almost 4 hour visit.  At last night's gathering with close girlfriends we toasted Michelle's engagement to Pete.  Tonight I will do it all over again with different girlfriends toasting Toni and Paul.  I visited my own city including Imos and the Arch with Lisa and her new bf, Tim.  I have had lots of Amy and Katie time including dinner, my favorite Robust, and a good 'ol BAM party.  Christmas was also spent with my second family, the Neighborhood friends, where the singles beat the married, a Nerf war erupted, and we laughed until we cried (haha!).  JRob and I have found ourselves living up life all around town into the wee hours of the night taking pics with Santa on the street.  It has been beyond busy and more fun than I could have ever asked for.  Here I am, on day 7, and finally having a morning to myself.  I still have a day full of my Maryville bff, Kelly in store, as well as Baby Lucy love, a lego extravaganza, a sister tea-date (as much as I annoy her, she can't hide for long!), Toni time, NYE, and hopefully a day all to myself :).  

I have found myself spending more time than usual reflecting on my enjoyable adventures so far this break.  I have been healthy which is the most important and most exciting of it all.  Still a bit of the cold, but nothing bad at all!  My cough has had me lying to countless people that it's just a cold, but then again, most of the people I have been with know it's not just a cold.  They just get me water :). 

My favorite part about this past week is I haven't been thinking about my diagnosis.  It's starting to become a part of me, time is finally letting it soak in.  The most recent news is a bit scary, but even more reason not to focus on it and enjoy what amazing people I have in my life. 

I still have a whole entire week of this amazingness!  (and yes, that word was for you, Kristin Jane :)

Increase in Chemotherapy = Increase in Retail Therapy!

A very good and old friend of mine, who I have mentioned before, decided he needed a visitor while he was wrapping up an out of town deposition in Minneapolis this past weekend.  So after a bit of arguing back and forth via text (because how many times can I have friends fly me around until I say enough?!), I was pleasantly surprised to open my email a couple weeks ago to discover airline tickets waiting to whisk me away to Mall of America for the weekend!  I knew it was going to be a week of scans and doc appointments for me, and Curt just received an honorable recgonization at his firm, so this was going to be a weekend of celebration for the both of us (well, with the hope that I was receiving good news from the doc).  When I arrived in Minni and didn't come bounding off of the plane shouting great news of shrinking tumors, he had a feeling I wasn't arriving with good news - but we left it unsaid, not to get in the way of my first meeting with Mall of America. 

The day was filled with frivolous buying, awing over ginormous lego sculptors, feeling dizzy just watching the children flip in circles on the roller coasters, indulging in delicious food, and learning the map so well that I was able to provide assistance to the tourists.  When my feet and the Visa became tired, we ventured over to the W Hotel where I officially decided I was living the life of somebody else for the weekend.  I am not one to shop around the biggest mall in America as if I own it or spend my weekend in a swanky hotel for the fun of it.  I rent a room from my friend and work a second job at a boutique so I do not feel guilty spending money on myself instead of Barnes.  From the moment I landed to the moment we sat down at dinner, I felt like someone else... and it felt amazing.

After our MOA takeover, I hung out in my room for awhile sitting in the windowsill gazing over the gorgeous city, reflecting on the past 48 hours.  My cancer is growing.  I have NO idea how to handle this news.  I immediately want to cry.  But I'm so use to receiving upsetting news, I'm really good and just laughing it off and hoping for the best.  My emotions are like a roller coaster.  I can be so strong and optimistic, and then I'm lost in my thoughts about the future, finances, loss of freedom, side effects, fatigue, insurance, relationships, and the list goes on.  I can't just say I'm on a pill anymore... I'm on real chemo now. 

Curt and I roamed the streets and shops for a bit - including the skyway (the best idea EVER in a freezing cold city) - and ended up at an adorable restaurant where our table was soon filled with a delicious meal that neither of us could finish.  It was a postcard perfect night.  Giant snow flakes were falling outside the window, the staff was absolutely enjoyable, the atmosphere was cheerful with holiday decorations... and I was still pretending to be someone else.  But it was time.  Time to face the facts.  It was this very moment I was looking forward to most about the trip, being able to let it all out. 

I hadn't sat down to reflect on this recent news with anyone yet, so this trip couldn't have come at a better time.  Besides helping me get a B in high school chem and causing a ruckus at Healthquarters, Curt has always been there to lend an ear and thoughtful advice when I find myself lost in life (which has happened all too many times as a result from losing my mom and being diagnosed myself).  I began with the facts and ended with the hope slipping through my fingers.  (Thank goodness he felt the need to order us 8 plates of food because it took us that long to get through it all!!)

I finally admitted, to him and myself, that for the first time in eight years I am realizing that I might not beat this.  I keep my head pretty damn high and do not dwell on the fact that my tumors are stronger than all of the chemos they have tried.  And I haven't stopped being optimistic and believing that there will be an end - an end that involves me WINNING.  People always say, stay strong and you will beat this.  Well I am being strong!!  I have no control over the tumor growth.  So why must they keep growing?!

I vented about the fact that my friends are always going out of their way for me (including him).  I'm being spoiled.  When it's to the point where I find myself needing to ask others for help - they always help.  But they also help even when I don't ask nor need it!  My sister is carrying the weight of her life and now mine on her shoulders.  People are only giving more and more to me and I cannot keep up with repaying the favor.  It's overwhelming to be given so much attention and help.  I feel entirely selfish and don't know how to handle other people taking care of me for much longer.  And it's not that I do not appreciate it - I honestly would be lost in life without the help from friends.  But I feel so bad that they are always taking care of me.  Then the best line of the whole entire weekend occurred right then and there, "Melrose, you are not being selfish, you're being stupid."  I think I laughed until tears built up.  It was exactly what I needed to hear.  He helped me remove myself from my own shoes and look at it from the outside in.  Looking at my situation, I understand where others are coming from.  I would do the exact same for anyone one of my friends.  Stressing about other people wanting to be there for me is absolutely stupid to stress about.  It's not easy always accepting help, but I need to remember those who love me will be by my side, even when I say I'm fine, because that's what friends do.  I am so lucky in life to have such amazing friends.

I also came to the biggest realization of my cancer career that night.  I am constantly "running away" from my cancer, pretending to be someone I'm not.  I am quick to hide my cough as allergies or a cold when in reality it's because there is a tumor growing in my lung.  It feels so good to not look like I have a terminal illness.  But it also makes it that much easier for me to lie to myself.  Is it really being positive when I brush off my diagnosis as not a big deal?  I'm quick to talk it down because the chemo I went through before was more intense.  If I don't look that sick, then I'm really not that sick, right?  It makes it that much easier to pretend to be someone else.  But when I get home, the truth is there waiting for me.  As well as the anger, frustration, and jealousy.

I am often praised for my good spirit.  But is it really considered being in good spirits when I'm running away?  Well Curt brought it to my attention that I might feel like I'm running away, but it's not actually considered pretending - it's being a fighter.  I'm focusing on what makes me happy in life.  I put my energy in the positive, not the negative.  I don't sit around in bed and cry because I have cancer, I get off my ass and live life (well, when I'm not sick).  In actuality, I'm not running, I'm loving living and not letting cancer become who I am.  Last time, I knew there was an end in sight, so it was easier to let the cancer be in the spotlight, then let it end.  This time, the end isn't quite clear, so separating who I am from who the cancer is has become a bit more challenging.  But I like fighting, it's much more fun living life and being confused about how to allow everyday changes occur than it is to be moping in bed about the changes. 

I felt recharged when we left the restaurant.  As we walked through the Christmas snow globe of downtown, I was ready to once again own the fact that I have cancer.  I'm not entirely happy with the fact, and that's a battle in itself - being okay with something so ANNOYING in life.  But I'm a fighter, I am learning more and more everyday about how to deal with it.  Some days aren't hard at all.  But some days are and I need to learn that it is okay.  When the going gets tough, like it did this week, the tough goes to Mall of America with Curt.

This cancer may or may not win the battle with my body, but it will never win over my soul.  I will be the strongest fighter because although I'm not selfish with receiving help from friends, I am selfish about life and I want to indulge in every opportunity that knocks on my door... or just appears in my inbox.

Brentuximab Vedotin... Try saying that 5 times fast.

The new chemo I am on is called Brentuximab vedotin.  Or simply Adcetris.  Your choice.  Definitely not as fun to say as lenalidomide, but I don't mind one bit as long as it works!

This drug was recently approved by the FDA in August and has great success rates with Hodgkin's patients like myself.  Yay for high success rates, boo for having to pay for it (the chemo pill I was on was not FDA approved yet so the drug company could not charge me while I was in a clinical trial serving as their guinea pig).  BV is to be used after all other recommended chemos and a stem cell transplant have failed - which are both true of me.

This drug is cooler than most chemos with how it exactly works.  Most chemos like to take over the whole entire body and while killing the cancer, so it also harms good blood cells, organs, etc.  BV is attracted specifically to my cancer cells causing them to die, not divide.  Although it's main focus are cancer cells, it will still kill off and lower my good blood counts, but not as drastic as my previous chemo pill.

As for side effects, I'm dealing with pretty much the same annoyances as I was with the pill.  But since they do not expect them to be as intense so hopefully I will feel a bit of relief!  The only new side effect that is being introduced is neuropathy (I didn't know what it meant either - it's numbness in my hands and feet).

So far I've been feeling the fatigue (but I don't know what it's like to not feel that) and inability to digest food properly.  I think that is causing the fatigue as well - within minutes to an hour after eating a meal my body decides it's time to get rid of it, leaving me feeling zero energy.  Tonight and last night I've had low grade fevers - nothing horrible to call the doc about, but my body is telling me that something is up!  I'm feeling kinda icky... wondering now if I'm coming down with another cold or infection.  Hope not!!

The one side effect that really caught my attention is hair loss.  When my resident was rattling off the side effects, she said, "You should not lose your hair..." and I immediately responded with, "SHOULD not?!".  Now, this is not common nor expected to occur, but the joke is that I always seem to fall into the minority when it comes to percentages - a true talent of my body.  There's no point in stressing about this possibility.  If it happens, it happens.  Being bald has it's advantages... but I also think I'm able to be so okay with this because it is doubtful to actually occur.   The most that is expected to occur - IF it even occurs - is just hair thinning. 

Because this drug only takes 30 minutes to be administered (as opposed to chemos that take hours and even days) and it is not as harmful on my veins, they are not on the port bandwagon.  I am VERY pleased to know they do not see the benefit of me having another surgery and a gross port poking out of my chest again!  I did express my concern though that I am VERY fortunate to still have great veins for a cancer patient - I have nurses and techs tell me this all the time.  They look good for being an 8 year veteran!  But this is also because I have always had chemo administered through a port, not my arm.  The more my arm is used, the more those veins become damaged and IVs become more painful.  I already have a good amount of scar tissue built up - and I'm not even 30.  If this drug does not work and we switch to something else, then they will put in a port for sure (hopefully this one works!!!).  But with BV we are going to wait out the first few treatments and see how it goes without a port.  Unfortunately I did not do so well when the first treatment was administered.  The nurses were unsure if either the fluid was really cold or if it leaked, but it was painful.  I could feel the pressure in my vein as it went up my arm and I could feel my arm swell up.  It hurt and I was uncomfortable during the whole entire process.  Let's hope it was just a fluke and next time will run much smoother.  Otherwise a port might be in my future sooner than later (if ever!). 

Last Wednesday was my first treatment marking it my first cycle of treatment.  I will have blood work, visit with my doc, and end with treatment every 3 weeks.  My first round of scans on this drug will occur at either the 6 or 9 week cycle - I will find out at my next appointment.


Overall my docs are very excited about this drug.  They are optimistic to see shrinking results immediately with the hope that it could possibly eliminate my tumors all together.  Unlike the lenalidomide, I cannot stay on this drug forever even if only stability occurs.  I'm actually limited to a year (haven't looked into why).  So lets hope for some major shrinking in the next 12 months!!

Medical News Today has a good article about Brentuximab vedotin if you are interested.

Big Changes

First, I cannot thank everyone for their endless love and support.  The emails and text messages have been blowing up my phone for the last 24 hours.  You are all so wonderful and make me feel so loved.  I appreciate it more than you know.  And even those who I do not even know, but have taken the time in their day to send me a message of hope, I am truly grateful.  Thank you.

There is so much to explain, but I'm going to keep it short and sweet for right now until I have the time to sit and really focus on the details.

I received news that my tumors are no longer responding to the chemo, so they have started me on a new drug.  Disappointing news, but they are still optimistic.  Health wise, nothing should really change - I will be able to tolerate the side effects just as well as I have been with my prior drug.  The big change is that it is no longer a pill, it's an IV treatment so it will now be administered at the hospital every 3 weeks.

I was doing okay with the news, but now that it's had time to settle it's starting to get to me.  Everything happened so fast yesterday.  I was on a chemo pill for the past 10 months - easy peasy.  I didn't really feel like a cancer patient.  But during treatment yesterday I was surrounded by cancer.  I was on the side of treatment with the patients who are on clinical trials or studies, like me.  Except they look a lot worse.  There were 5 other people in my treatment pod.  The woman next to my bed looked at me surprised, "You don't really have cancer do you?!"  I explained my story to her and the other women around me.  Next thing I knew everyone was taking turns sharing their stories.  The woman who looked ten times more ill than me also had more optimism than me... and the doctors have given her only one more year of life.  The woman across from me was in so much pain she could only cry - and she was on a heavy morphine drip.  Another woman was asking me about the scientific differences between our similar cancers.  I went into details about the different types of cancer cells, but spared her the information that her cancer is much more deadly with a high recurrence rate.  I did not belong there with those woman.  For starters, they were at least 20 years older than me.  They were bald.  They were over weight and just looked sick.  I felt guilty throwing my healthy looking, young body in their faces.  I'm going to suck it up and put on my best smile, but I am not looking forward to my next treatment.

The good news - my cough (that has only been getting worse) will hopefully clear up for Christmas.  They have decided that it is growing worse because the tumors in and around my lungs are growing.  My amazing resident told me her Christmas gift for me is a diminishing cough.  And I can't think of a better Christmas gift :).

Feeling good vibes

My inbox and text messages are blowing up today.  Thank you for the support, it feels so good to not be alone in this.  

THINK SHRINK!!!

Month 10 Scan Time... THINK SHRINK!

I'm hanging out in Necular Medicine for my 4th round of scans on the trial. My bed is as cozy as always with my heats blankets, but the ice cold cocktail and saline drip do quickly make me chilly! It's time to nap for an hour while the radioactive dye finds its way to my tumors. I see my doc on Wednesday for the results... THINK SHRINK!!

December 4th

I woke up stirring around in my bed a bit, unhappy to be awake before my alarm.  I rolled over and opened my eyes to notice the hall light was on.  I laid quietly and could hear someone downstairs.  I looked at the clock - I still had a good 30 minutes of shut eye.  I rolled over again, hoping to fall back asleep, wishing my dad would remember I hate it when he leaves the hall light on - I like sleeping in complete darkness and that little light under the door drives me nuts!  But then again, why is he even up?  I am the first one up in the house on school days.  Is it Saturday?  Is my clock wrong?  Then it hit me - my mom.  Something must have happened.  The anxiety began to build.  She was last with us on Thanksgiving, before she slipped into another coma.  This coma seemed to be a long one.  Everyday when I would come home from school my dad and the dog would greet me at the door.  We would hug and I would always ask, "Did she wake up today?"  It was just a few days ago when instead of hearing, "Not today.", I was responded with, "Honey, I don't think she's going to wake up from this one." 

I laid there, not wanting discover the truth, but I already knew.  It didn't take long for me to figure it out, nothing felt right about that morning - and I had only been awake for a few minutes.  I put on my slippers and walked downstairs.  My father was in the kitchen already making breakfast.  He turned and looked at me as I entered the kitchen.  "Why are you up?", I asked.  Without any words, he came over and hugged me, "She passed away in her sleep last night."  

I don't remember too much more about that day, just a lot of people in and out of the house.  It was really hard to say goodbye to her Hospice nurses, they had become family to us over time.  Relatives, the minister, and neighbors came by to help my father with the organizing and planning for what was to come.  By the end of the day, I was ready for a bit of normalcy in my life.  I was excited that schools were letting out and I waited for Katie to come home.  I walked down the street feeling a bit of freedom from the sadness that loomed in my household.  Unfortunately, it was at Katie's house too.  I didn't stay long, but enough to gain a some peace of mind; and to wish Katie a happy 11th birthday.  

That was 15 years ago, December 4th, 1996.  Since then it has become easier, but it'll never be easy.  But having friends like Katie, and waking up to emails from her, 15 years later, are what keep me strong.  She is no longer two houses down the street from me, instead she's about 4 states away.  But she knows how to be there for me on days like today - even if it is her birthday. 

Thinking of you today. It sucks that all this sickness and side effects are creeping in, but I know your mom is watching down on you and is your biggest cheerleader.  You learned how to be strong and handle adversity from one of the best.  When I think of when we used to hang out in her room with her, I don't remember her as being sick. I remember just a happy mom who would smile even as she got tired and closed her eyes. I see that positive attitude and spirit in you now too. I am amazed at it, but it is one good case of "the apple didn't fall far from the tree". 

Wish I could be there with you today, and way more often for that matter.  Also, thanks for always celebrating with me on my birthday all these years. I have to think that it might not be the time when you want to be all joyous, but I appreciate it.

Love you lots and miss you. Thinking of you always.

Happy Birthday, Katie, and thank you for helping me start the day off right.

Finally some pep in my step!

This week has deininiately been MUCH better!  I've continued with the 8:00 bed time and I'm wondering if the snot will EVER leave, but the energy is back up!  Hooray!  I still have some moments of dizziness where I catch myself finding the room spinning, but I am keeping my meals down and it's been weeks since my temp has spiked for no apparent reason, so I'll take it!  It feels so damn good to be getting over this. 

Over the past few years I would catch myself driving with the windows down, loving the wind and feeling absolutely great when I would be slapped in the face with reality - this is a moment I should cherish.  I CANNOT take my health for granted.  And I found myself doing that every now and then, forgetting how horrible it was or how bad it possibly could be.  It's gut wrenching sometimes to know I have big plans in the near future and there is good probability that I will wake up ill and unable to attend.  That is why I am such a big believer for living in the moment.  I almost feel like Jim Carey from Yes Man, I have no reason to turn down any invitation or opportunity.

Being with friends over Thanksgiving was very therapeutic as well - much needed mental medicine.  I also have had this annoying abdominal pain looming over my head.  We had NO idea what it was.  Strange pain, comes and goes, but slightly intense.  I felt like this was just something else to add to the laundry list.  There is ALWAYS something.  And that was getting to me - knowing that once I get over one bump in the road, another bump will be there waiting.  But I'm happy to realize that my slump is over and I'm ready to deal with the bumps head on! 

As for the abdominal pain, I had a CAT scan on Monday - totally annoyed to be paying hundreds of dollars and missing an afternoon of work - but at least my oncologist and I will have peace of mind.  The good news - nothing showed up!  So it's not a tumor or crazy infection.  We are banking on muscle tear.  And now you wonder, what on earth is this girl doing to tear a muscle?  Well, as you have learned one of my many talents is injuring my body without any realization.  In the past 5 months I have fractured two ribs simply from coughing.  This muscle tear would be a result from vomiting - that stomach flu seriously beat me up!  It is not healing very quickly (going on 3 weeks now), but it's also very tolerable.  It could absolutely be worse!

It feels soo good to have an increase of energy, physically and mentally, and to be feeling well again :)

So Much Thanks

I love this time of year.  Thanksgiving is very sentimental to me.  Fifteen years ago, Thanksgiving was my mother's last day with her family.  She was slipping in and out of comas for weeks prior to the holiday.  We found her in a deep coma for days before Thanksgiving.  My father hosted, having the family over for dinner that year with hopes of my mother being able to join us.  Well, she must have known that we spent hours cleaning the house and prepping a big meal - she woke up just in time.  At this point in her battle, she often had seizures and hallucinated.  But on Thanksgiving she woke up happy and alert.  She knew who everyone was and was so happy to see her extended family.  Everyone took turns eating Thanksgiving dinner by her bed.  It was a very heavy-on-the-heart Thanksgiving.  I was wiped out at the end of the day - hosting Thanksgiving takes it out of you - especially at age 14!  She was the last person I spoke to that night.  We hugged, kissed, and said goodnight.  It was truly wonderful to have her back, if only for a day.  The next morning she didn't wake up with the rest of us; she slipped into another coma.  Except this time she never woke up.  She passed away 10 days later. 

Thanksgiving 7 years ago also holds a special place in my heart.  I returned home from my transplant just two days prior to turkey day.  I arrived home late at night to a big Welcome Home sign on my house from my neighborhood friends.  The next day they surprised me with a Welcome Home party.  I have a very small immediate and extended family, but I consider myself so blessed to have my neighborhood friends who I consider family.

Bradley, Me, Bryan, Katie, Jason, Amy in 2004

Thanksgiving brings so many of these loves back to St. Louis.  This year was a bit different... well, actually VERY different.  Most of my neighborhood friends didn't come home, in fact, some even left!  But with time, life changes occur.  My extended family did not come home either, resulting in my Aunt (Thanksgiving host) to leave town as well.  This year my sister, father, and his wife enjoyed Thanksgiving out to eat.  Yes, very different, but I found it surprisingly enjoyable.  The afternoon continued with putting up Christmas lights at my Dad's, and then an evening at my place filled with the neighborhood friends who were still in town.  Despite some dizziness, more snot, and pure exhaustion by the end of the night, it was a great Thanksgiving.

As I laid in bed that morning I thought about all of the wonderful things I have in life to be thankful for.  Sure I was given a shitty diagnosis at the beginning of the year, but having cancer has only brought out the best in everyone around me.  Not that I was surrounded by negativity or have friends who aren't nice, but I've watched how having someone in your life who is battling gives them a different perspective on life. I'm not too ecstatic that I was nominated for the job, but I feel so honored when people compliment my attitude and refer to me as inspiring.  Yes, some days it's been hard and I've had to work on my ability to stay positive.  But for the most part it comes natural.  I guess I'm thankful for that, too. 

My friends have gone completely out of their way for me this year.  Steph and Lisa throwing me my surprise event in Chicago, then Sarah, Kuhn, and my sister organizing a St. Louis benefit, the girls are constantly coming over and having couch time with me when I'm sick, Aunt Ronna continues to bring me dinner, Curt is always sending me care packages, Katie & Bryan flying me out to Colorado for a visit, Amy taking care of me in the ER and post hospitalization, the BLUSH girls always covering my shifts when I'm sick, JRob coming over just to get me sprite from my fridge because if I try to move from my bed I will only puke more.... I am so incredibly blessed to have such amazing friends who have gone out of their way for me this year.  And it's not just my friends, but friends of friends.  All of those out there who have participated in my benefits and donated to my medical bill drought - I am so touched and beyond thankful. 

I have had a very relaxing 4 day weekend from school.  It was filled with a lot of sleep and social interaction - two necessities in my life!  It was great being able to get out a lot.  And I loved having so many high school friends in town.  My place became a revolving door on Saturday - friends stopping by while I took advantage of my couch - I loved it!

I really dislike this cancer thing - a lot.  But I'm stuck with it and still working on making the best of it.  There is NO way I would be this positive and capable to carry on with such a burden in my life if it wasn't for amazing people in my life.  I love my friends.  I cannot be more thankful for my friends, helpful neighbors, amazing bosses, an incredible sister, and people who I don't even know who have gone out of their way for me.  Life has been pretty rough for the past few weeks with sickness, but at the end of the day, I am so thankful to still be here and a part of it all.

Sick, sick, and more sick

I started this post last month, but with going to bed around 7 most evenings I have been neglecting my blog.  I have pretty much been spending all of my time at work or in bed for the last month recovering from a cold that has hit me harder than just a cold - more or less a head/body/sinus/hellofalotta snot/sneeze&cough annoyance.  Oh, topped with ZERO energy.  Instead of just writing and posting, I've been adding to this same post for weeks.  I felt guilty actually posting it because it was for the most part all negative.  I've cut out all of my complaints, and decided to just to recap the past month.  It's honest, but no longer depressing!  I was filled with negativity from being overwhelmed mentally and physically, but I think with the ending of this cold I'm regaining control over my life once again.  Thank goodness!

My first week of the cold from Hell:

Day 1: Woke up sore throat, headache, and zero energy.  Called into work, stayed in bed until about 5.  Back in bed by 8.  Here we go...

Day 2 & 3:  Where does all of this snot come from?!  My body is completely drained.  Every single child in my class has it as well.  But they seem to push through it much better, why am I such a whiner?

Day 4: Worst. Day. Ever.  Went to work in my pjs, cuddled up in my snuggie, and pretended to be a teacher.  My kiddos are such troopers.  Called the doc.... "Since it's viral, just keep taking the Nyquil.  Any antibiotics would be more harmful in the long run."  Stupid cancer.  All I want is relief!!  Krissy leaves for a 2.5 week international business trip - I cannot let this get any worse. 

Day 5:  Feeling some relief today!  Maybe I'll make an appearance outside of my bed and watch the final World Series game with friends?  Nope, by 5pm I was dragging and wanted nothing but my pillow.  Yup, slept through game seven.

Day 6:  Pushing through.  I think it's getting better...but then find myself drained by the evening, and in bed before my friends even have their costumes on ready to celebrate Halloween in the CWE.  But seriously, where does all of this snot come from?!  How and why must it reproduce so quickly?? 

Day 7:  Still pushing.  But maybe too hard?  I'm losing all energy.  Feel.  Like.  Crap.  Is my body become immune to Mucunex and Nyquil?!  I get a text from my sister's bff:  "This is your 72 hour check-up... how are you doing?"  And dinner was brought to me by my wonderful friend Aunt Ronna.  I canceled dinner plans with the girls and went to bed at 8.

WEEK 2: Repeat. 

Day 1:  Kids are still snotty.  I am still snotty.  But good news!  My cough isn't very bad at all - my ribs are healing!!

Day 2:  Feeling the energy to work a private party at BLUSH after school tonight.  And I really enjoyed myself!

Day 3:  Woke up tired and SORE!  Worked too much yesterday, oops.  Need to slow it down.  Asleep by 8.

Day 4:  Yup, still have this cold.  Not getting better, but not getting worse either.  We are at a standstill with one another.  Met my good friend Niki for some comfort food, Rich & Charlies YUM!

Day 5:  Still somewhat lethargic, and still more snot (it's never ending!).  But feeling the energy to meet up with friends for the evening!  Dinner was good, being social was awesome... until my body decided to HATE me (oops, pushing too hard) and suddenly became very ill.  Home I went and lived in bed for 24 hours straight.

Day 6 & 7:  Hibernation.  Evening of day 6 included a visit to my friend Rachel's house for her b-day.  But awful cold kept me from holding her adorable baby B :(.

WEEK 3: 

Day 1-5:  I am sooo much better!!  Still a bit drained, but being in bed by 7 every night surely helps!  Still some snot and headaches, but nothing as bad like it was the first week!  I've been dealing with a bit of the stomach issues this week, not keeping down all meals.  But at least it's not my cold!  The kids are over it and I'm getting there!  Finally, a light at the end of this tunnel of sickness!

Day 6:  Woke up puking.  Hello stomach flu.  There goes my much desired break.

Day 7:  I have overused the term zero energy, I am now in negative numbers.  That 24 hour bug took it out of me!  Resting for the remainder of the day.

WEEK 4

Day 1:  Regaining strength.  My non existent immune system is telling me to take it slow.  So slow I did.  Got a VERY frustrating letter in the mail about my health insurance.  I'll deal with that later this week, too drained.  Asleep BEFORE 7, dang! 

Day 2:  Routine check-up with my obgyn.  I don't visit this office very often, but when I do I am greeted with hugs - they are wonderful.  We discuss future steps of how to lower the probability of breast cancer (since it's pretty much inevitable), then I listen to them argue outside the door about changing my supplemental hormones to prevent liver damage (my liver is already on overdrive with my chemo pill) - I didn't mean to cause such drama! 

Day 3:  I'm really starting to feel better, but still VERY LITTLE ENERGY.  I see my oncologist, we discuss the past month's chemo side effects and cancer symptoms that have been coming and going lately.  For the first time I don't hear the same hope in her words.  She doesn't know how to answer all of my questions.  She's not doubtful, but unsure about how well this drug and I am really getting along.  She's disappointed to hear of how ill I have been... no one should have to live this way.  Her focus is on the latest pain I've been experiencing in my abdomen.  The visit ended with her confidence in next month's scans providing us knowledge if these chemo side effects are really worth my pain.  Oh, and a follow-up CAT scan next week about this random ab pain.

Day 4:  Still have this cold.  My energy is so low that I've been having mini-dizzy-fainting spells.  Nothing drastic, but enough that I white out and need to sit down.  While running an errand I am asked, "You sound like you're getting over a cold?" If only I have a penny for every time someone has said that to me.  I reply, "Yeah, you know, when it's warm one day, freezing the next it brings on the sinus annoyances"  "Yes, I've had it for a couple of days.  It's no fun, but thankfully getting over it, too."  Days?!  Woman, it's been weeks!  If only I could really say what's on my mind when people comment on my obvious head-cold-sounding voice.... "Actually, it's not just a simple cold like you and your neighbor's son, it's CANCER and won't go away!"  Hopefully I get over this soon so I don't lose my cool and accidentally slip and say that to someone!  I'm starting to lose my patience with all of this.  I'm tired, I'm cranky, and so sick of being sick!!

Day 5:  Exhausted.  I tried dealing with my health insurance headache... and it ended with an even bigger headache.  Oh cancer, you are draining me physically and mentally!!  

Day 6:  A Saturday of BLUSH with an evening including dinner and Sheila.  She text me earlier in the week asking what my plans were for the weekend.  I replied none, but I was going to hang out at home.  Over the past several weeks I have canceled on three birthday parties, a wedding, Halloween, World Series games, a girls dinner, and just not going out on the weekends.  Sheila knew that if I was voluntarily staying in something must REALLY be wrong!  She came over that evening with dinner and we sat on the couch catching up all night.  It was nice.  I really needed it.  All of this time in bed and being nonsocial was getting to me.  I didn't know it at the time, but I had fallen into a depressed slump from being sick.  After some healthy venting with Sheila, I was ready to get over my slump and work on combining being sick with being social.

Day 7:  I still have a cold.  But I'm going to focus once again on the positive, and not let this constantly being sick get to me.  I'm going to make healthy decisions, next week mixing play with rest.  

I have been in and out of sicknesses ever since my hospitalization in September.  My only outings last week included doctors' offices.  I have been on the phone with my insurance and hospital billing reps this week more than I have with friends.  Cancer has definitely found a way to take control in my life.  I have no idea how I let that happen.

I thought time was suppose to make this easier?  Instead I watched my oncologist let her optimism fall last week.  The cancer symptoms, chemo side effects, and size-changing tumors now have her in question about this clinical trial drug.  Time has only allowed for more medical drama and doubt in my ability to remain as upbeat as I was back in March.  I haven't doubted myself for one minute that I will beat this.... and then I find myself conversing with a medical professional ending with "What is your life expectancy?".  


No one said this was going to be easy.  And I've been fortunate that for the most part that this has been pretty easy.  But it's hit a rough patch.  I feel helpless relying on others to take care of me while I'm sick.  I've let so many down being stuck in bed.  I've canceled on so many things.  I need to be well again to regain some sort of control.  But as long as I stay in my classroom and catch all these sick germs from my kiddos, I don't see illness leaving my life until spring.  I just need to hold onto hope a little harder until the rough patch passes.  Because with every rough patch in life, this one shall too pass.  

Just.  Takes.  Time. 

I finally figured it out

OK, so this whole cancer thing is on my mind pretty often.  Not in a bad, depressing way, but the affects from this cancer are ALWAYS there.  Whether it's due to the pain from coughing or from the need for suddenly requiring 10+ hours of sleep to properly function, there is always something popping up that reminds me it's not just another cold... it's cancer.  I will focus on whatever is currently affecting me, then stratagize ways to deal with it and move on.  But that's the thing... I'm only able to move on until the next bend in the roller coaster!

When I was first diagnosed in 2003, I was given a prognosis: 8 months of chemo and 1 month of radiation.  Ok, no biggie.  Well, then the chemo backfired and I found myself 8 months later leaving college and moving into Barnes hospital.  This time I was given a new prognosis: 2 months of grueling chemo followed by a month of high-dose chemo and a stem cell transplant.  Oh, and then a month of radiation.  And that time it came true - beginning to end.  Sure it was one hell of a chemo ride that lasted 15 months total, but I did it.  And then I FINISHED and entered remission.  The End (well, besides the additional full year it took me to really feel 100% back to normal).

That's the thing with cancer... when you are diagnosed, for the most part, you are given a prognosis.  Here's your treatment schedule with this many drugs for this amount of time.  Then THE END, have a happy life.  So here I am now, almost 7 years later with a relapse, with a prognosis including no definite prognosis.  Until a cure or really awesome treatment comes along, I will have cancer for life.  Everyone I know, including myself back in 2003, is given a prognosis when diagnosed with cancer... battle, win, and then move on with life.  Thing is - I am in a lifetime battle.  So what I'm battling with is not just the chemo side effects, but the mentality of having this disease and it's crazy roller coaster bumps for life.  There is no end in sight.

I've been sitting on this realization for a week now.  I feel much better now that I'm able to pinpoint my struggles a bit.  So I'm not crazy - living with a terminal disease that most beat in less than a year is very stressing on the mind.  Even though (and thankfully) I'm not in physical pain (for the most part), I'm still mentally drained by this prognosis of no prognosis.  I don't mind having these tumors, they do not affect me one bit... it's the damn treatment.  It's this cold that's lasted for 2+ weeks now and kept me in bed for a good part of it.  It's the unknowing that when I eat a meal, it might very well come right back up.  It's fracturing ribs from coughing and not being able to pull my weight at work.  As soon as I'm over one thing, something new occurs.  And I have NEVER been one to look at life knowing that there will always be something negative around the corner.  Sure there always will be something, but why look at life that way?  I learned from my mother to only look for the positive; it's what you have to do to stay sane when living with cancer.  Sure, the negative will be there, but just deal with it.  She would often say life isn't fair, so get over it.  And this cold is not the end of the world... but knowing that as soon as it's over there WILL BE something else; and that is what is wearing on my mind.   

I feel like a weight has been lifted off of my shoulders since I've come to this realization.  It all makes sense now. This time is not just different from my own experiences, but it's different from any cancer patient that I have ever met.  It's starting to look like the best treatment for me at this point is time.  Only time will let this soak a bit longer and allow me to become more comfortable with the loops and bumps in this roller coaster ride.  Will my tumors next time be stable or will they continue to grow?  One day will finally come when I'm so use to this disease that it's annoyances will not constantly be crossing my mind.  I look forward to that day.

Mid Cancer Crisis

So I had a mid-cancer crisis.  Well, it's really not as dramatic as it sounds....

It was about midsummer when I was having the brakes replaced on my car and I started talking future maintenance costs with my mechanic.  I began to realize that my car is old.  She just turned nine.  Her engine is still good, but she's now over 110,000 miles and has a lot of little things going on.  We started adding up the work she would need over the next few months (starter, tires, emergency break, etc.) and it was going to be as much as having a car payment every month again.  So what did I decide?  I'd rather have a reliable car and just have a car payment again!

So I was looking for the past couple months and mulled over my expensive taste and what is actually practical in my life.  Well, if you know me well, you probably already know that I chose something fun over practical.  It only took one test drive and I was sold - she's an RX8... on steroids (the 40th anniversary of the rotary engine edition).  She's beautiful!  And SUPER fun!  The life-is-too-short-to-drive-something-practical voice just wouldn't leave my head.  I look at her now and get overly excited.

It took a lot of discussions with friends to make sure this was the responsible decision to make.  Yes, a new, reliable car was going to be a necessity in life (well, used - new to me), so I saved up from the summer and finally pulled the trigger!  I am very proud of my decision.  I teared up when they took my Mazda 6 from me - she was my first big purchase in life post chemo the first time.  I was so proud of what she represented.

I call this my mid-cancer crisis because I am 99% sure I would not have purchased such a fun car if I wasn't living everyday of life like it could be the last.  Life is too short to drive a car you don't love.  I'm in love with driving my car!

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...

You know you have a fractured rib when...

You know you have a fractured rib when you say "AHHH-OWE" instead of "AHH-CHOO".  Yup, it's back.  Not sure if it was ever for sure healed, but it is NOT happy now!  All that coughing from the pneumonia has it back in hurting action.  Unfortunately, my cough is not produced from phlegm but instead movement - so far meds have not helped the cause.  I am found throughout my day at school singing with my kids and holding my chest trying to apply pressure to the discomfort... this is a very strange injury!  I've had a lot of medical issues in my years, but this is by far one of the strangest to deal with!  Time to google coughing remedies....

Back in Good Health!

It sure does feel good to feel good.  I started back to work last Monday, and yes, Monday was too early to go back to work.  I will admit, another day or two in bed would have been nice.  But I’m pretty sure the kid’s spirits healed me the most.  I had just spent 7 straight days in bed… 5 ½ of which in the hospital.  I would say my strength is about 98% restored and I’m back into the routine of things.  FEELS GOOD!

I saw my doc last Wednesday… of course looking quite healthy and normal by this point with it being 5 days out of of the hospital.  She entered the room and just looked at me and laughed saying, “What happened?!”  I never saw her personally during my stay in the hospital, the oncology doctors on my floor were in touch with her about my status as well as her nurse coordinator and I were in touch during the week as well.  When I’m sick, I look sick.  But when I’m feeling well, I for the most part to not show any signs of being a cancer patient.  Slightly hard to believe I was at my lowest in years last week.  She is overall very happy with my current health status.  My blood counts aren’t bad… not great… but good enough for her (and my trial requirements)!  My vitals (pulse, blood pressure, temp, etc.) were off the charts crazy during the intensity of the infection, so she was happy to see them back to normal as well.  On paper I look good, and in person I feel good.  Sooooo good to feel good!!

As for my nupogen shots… She’s holding off on those again.  I had blood tests weekly last month to monitor my counts and they never dropped low enough to take me off the trial (phew!) so there was no need for the shots.  She has decided she just wants to push through this month – no blood tests or shots – and just see how it goes.  I do scans again in 4 weeks… We will see how these tumors have been doing for the past 2 months.  Standstill is necessary…. Shrinking is always welcome!!  Growing…. Well, that has yet to occur since I started the trial so hopefully that is something that will not need to be thought about or discussed any longer.

Well, that pretty much wraps up the facts.  Pretty simple – I like it!  I’ve done a lot of reflecting on my mini vacay at Barnes and am realizing I have some life changes to make.  I need to slow down in life.  Sleep more.  Party less.  Learn to say no to friends and invitations.  I love being busy – it’s what I do best.  But unfortunately I have reached a point in my life where less is more.  I really need to pay attention to my body.  Yes, that is much easier said than done.  It’s crossed my mind about a career change… it was my kiddos who I originally caught my infection from (but my body is weaker than theirs and it quickly transformed into pneumonia where as they just ended up with a runny nose).  It puts a GIANT lump in my throat just thinking about not spending every day with my kiddos.  No, I am not making any drastic decisions in life quite yet.  I am too in love with my job.  But it’s on my mind… unfortunately.   Right now I’m living month to month… sometimes week to week… waiting to hear about my blood count levels.  It is nerve wrecking and absolutely annoying.  I’m really hoping my body will just finally adjust and stop jumping all over the charts.  I’m ready to regain some of my freedom.  I’ve lost lunch breaks for impromptu blood tests.  I miss Wednesday meetings at school because that is the only time I am scheduled to meet with my doc – there is no freedom.  I haven’t totally lost control of my life – but it’s changing, whether I like it or not.  I was hoping by now, 6 months into this, there would be more of a schedule; more of an expected routine.  But here we were on Wednesday are discussing my unexpected week stay in the hospital and the possibility of shots in the future… with no real idea of what is to come.  It’s a wait and see game – I prefer games that involve the Carman Kids and Pictionary… or a Saturday by the pool with Jello shots.  SO, I’m not making any rash decisions at the moment… but I’m keeping all career, living, and relationship options on the table… until we hopefully figure this whole “having cancer for life” thing out!  Shesh!

So to end, like always…. I have also done a lot of reflection on my friendships.  They are truly amazing.  I did not have to make one single meal for myself last week and I cannot thank you all enough for that!!  It truly made my life so much easier.  I found myself several nights stopping by the kitchen when I arrived home from work, and heading straight to my bedroom to pass out for the night.  I felt fine last week, just pretty worn out.  It was the emails, calls, texts, cards, flowers, food, and endless love that made my life so much easier.  Thank you all!!