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.