Still on Cloud 9

Well it's been a couple weeks since the great news and I'm still feeling the excitement.  I've come back to reality a bit - I have registered that although this is great news, I'm not done yet.  I see my doctor in a couple weeks and we will discuss when she wants to do scans again.  

Overall I have felt as close to normal as I have yet on the pill.  In the last 3 weeks the nausea has calmed and I've been able to eat a normal diet and keep everything down (phew!).  Although I am still eating A LOT :(. My energy has increased and I have found myself able to get through some days without a nap and even staying up past 9:00!  Wow!  It looks like I'm starting to get the hang of the pill.

My doctor decided that I did not need to do weekly blood tests (my veins and wallet are very happy about this).  So I have had zero responsibility this month... besides trying to stay healthy!  With that said, I'm back battling my respiratory/throat thing.  The voice comes and goes, and with my white blood counts being so low, it's going to take time for this to fix itself.  I've noticed other annoyances due to my low counts (like this rash that breaks out on  my face like I'm 13 again!) but at the end of the day it's not that bad at all... it has definitely been worse in the past!

 

Happiest Day EVER!!!!!!!!!!!!!!!!!!!!!!!

I cannot even begin to tell you how excited I am.  Every time I try to explain it, I find myself in tears of joy!  

In 2004 I went through 8 months of chemo (intense might I add).  I wrapped up in August '04 and couldn't be more excited that it was my LAST doctor's appointment post chemo.  I showed up in cute clothes (versus my chemo pjs) and with my wig feeling like I was on top of the world.  Well, I was quickly brought back down to Earth when my doctor informed me that my post-chemo PET scan showed that my tumors grew, not shrunk.  My dad, sister, and I went to Bread Co to allow the news to soak in and planned my return to St. Louis for a stem cell transplant... 2 weeks before senior year.  Biggest disappointment and shock of my life. 

Since that event in life I have always prepped myself for the worst.  Of course I HOPE for the best - I do consider myself very optimistic and do daydream about the day when I'm not on the phone with the Barnes billing department; but I try to stay grounded as well.  My nurse coordinator is one of those people who only calls with bad news... just to prep me so I have time to let it soak in and then we can discuss it at the next doctor's appointment (I think they've picked up on the fact that am useless when they give me bad news on the spot!).  By the end of Tuesday (yesterday) I hadn't heard from her yet so I REALLY started getting anxious that this could be great news!

Today.... my sister is out of town (she is a volunteer counselor at a camp for children who are experiencing bereavement) and we debated about her leaving early to join me.  I finally decided that there will be many doctor appointments in the future and her kiddos needed her to be with them as they were winding down their last hours at camp, so Amy was my official tag-along for the Big Day (of course Krissy argued, but in my true style I won).  All was going smoothly, the tech who draws my blood sent me on my way with high hopes that she wouldn't be seeing me in the near future and Amy and I found ourselves waiting in the small room for the doctor.  Typically, my doctor's resident comes in first to discuss every detail about my health with me, then reports to my doctor, then they both return with my nurse coordinator to discuss my status and prognosis.  Today, the first person to walk in the door was my doctor.  Oooh shit.  I wanted to cry on the spot.  She only comes in first when there is heavy news to be discussed.  As I was introducing Amy to my doctor, Susan (nurse coordinator) was joking that it was too bad that my sister wasn't here for the good news.  I immediately stared wide-eyed at my doctor as she gave Susan a hard time for slipping the good news.  I couldn't stand it anymore, "So what is going on?!"  My doctor replied, "Your tumors are shrinking," The sweetest words I have EVER heard.  

So now for the facts.... 

I have 2 tumors; one in my lung, one in a lymphnode in my chest.  The one in my lung has decreased SIGNIFICANTLY!   This is HUGE news!!!  When my oncologist introduced this clinical trial she suggested that it would be perfectly fine if my tumors just maintained size.  Decrease would be great, but not exactly expected.  I called my sister first today after I left the office and even said she was "pleasantly surprised."  The other tumor, in my lymphnode, has decreased, although not as much.  It also still has a decent amount of "activity".  Activity is more concerning than size, BUT since the size of the tumor has decreased, that is great news that the tumor is on the road to extinction.


My doc didn't have too many questions for me, nor did I for her.  Both of us were on cloud nine.  Amy and I left happier than we have been in a loooong time.  My dad met us in the waiting room and I immediately hugged him with tears.  All I could spit out was "It's shrinking" and he started to cry as well.  I explained the decreasing details without blubbering too much, and then we were off to the treatment waiting room for my refill of my lifesaver, my chemo pill.  


I spent the next hour of my life staying clam, coloring (gotta love a little art therapy available in the waiting room) with Amy while my dad attempted to put together a puzzle that involved pieces from two different puzzles... very entertaining.  We waited and waited and waited until I became too anxious and checked in with the pharmacy about my pills because I had some celebrating to partake in!  Turns out my labs weren't all back yet so Amy and I decided to check out of the hospital for an hour to begin some pre-celebrating!  (Because it's a clinical trial I have to meet certain pre-requistets with my blood counts.  My neutrofils (the ones that are very important and I have been low on - see previous posts) BARELY made the cut off for me to stay on the drug, PHEW - now cross your fingers I don't get sick!). 

I have spent the evening celebrating and am wiiiiiiiiide awake still with my high on life!  The amount of joy that is inside of me is incredible.  I am sooooo happy.  I also cannot thank my friends enough for their support.  I received endless texts and emails today of support before I received my results, as well as texts and phone calls after.  Thank you for your support and love, I'm not sure I would have gotten this far so successfully without your support.  Thank you.


My battle is not over, I still have a bit to go.  But battle I will, and win I shall!  I did it a couple times before, I'm not worried about doing it again.  


LIFE IS GOOD :)

And waiting....

Think Shrink!
Think Shrink!
Think Shrink!

Think Shrink!

Well, I did my job today. I took a nap in a tube and laid very, very still. My radiology tech was a hoot talking up a storm and wrapping me up in the warm blankets in my bed (I seriously want a blanket warmer for Christmas. But I think I've been saying that since I was a kid...). I felt bad that I didn't have the energy for her. But I was also starving (had to fast for the scan) and a saline drip was not cutting it! (BTW, I had to cut all carbs out of my diet 24 hours prior to the test - NOT easy! I now know why people lose so much weight on Atkins! After the scan I feasted on carbs :).

Now to play the waiting game... I get the results on Wednesday!

HIgh Maintenance!

Yup, my body is 100% high maintenance.  I have the expensive creams and lotions to help my skin from aging (from the effects from the chemo and surgery scars over the years).  Between vitamins, probiotics, supplements, and prescriptions, I take 8+ pills a day (also, NOT CHEAP).  But this time my body is truly upset with me (and so will be my doc if I can't get this fixed ASAP...).  My time in the sun should be limited, and for the most part it is.  But one of my favorite vices in life is being at the pool.  And considering there is one just outside the back door of the condo, I have found myself there many times already this summer :).  I have been good about it in years past, but I have decided that life is short and I want to enjoy the little things - like pool time!!  My roommate and I spent all day Friday at the pool loving every minute of it.  And I reapplied spf 3 times!  I did not burn, I am good about that, although my chest did get a little pink (but it does no matter what - it was burned severely when I had radiation treatment on my chest in 2005).  Unfortunately my body does not agree with my recreational hobby and I have broken out in a rash, a symptom of Polymorphous light eruption (a form of sun poisoning).   I'm pretty sure this has only occurred because my neutrophil count is low (see previous posts about my blood counts).  lt is commonly found in people who are rarely in sunlight and find themselves spending time in the sun.  I really just look like I have acne in very random places on my body (like my knees, looks kinda funny!).  Yes, it itches, but I have been covering it with hydrocortisone cream so cross your fingers for a quick recovery!


Now let's just hope these tumors aren't going to be as high maintenance!  Tomorrow is the BIG DAY!!  I have my PET scan scheduled for the first appointment in the day tomorrow.  I will drink the yummy barium (no, it's not really yummy) and lay in a bed for an hour while radioactive dye is administered via iv and searches my body for tumors.  After an hour of laying around, I then do some more laying, but now it a tube.  But I'm not allowed to move while in the tube, so not as easy as it sounds.  Somehow this tube I'm laying in takes pictures of the radioactive dye that has attacked the tumors, so the radiologists will be able to tell if the tumors are growing, shrinking, or have stayed the same.  COME ON SHRINKING!!!

All Good Decisions Were Made

My day of laziness paid off today!  It started on the couch, then moved to the pool by late morning.  There is no specific time I have to be at the hospital for labs (have my blood drawn and tested), but I have the weekly appointment set for after school time.  Today the water felt so good, I knew I wasn't going to make it by my "appointment" time, but it's not like I'm meeting with the doctor and need to be on time.  Amy was poolside with me today and joined me when I finally decided it was time to be productive.  So we began our journey to Barnes.  But leave it to us, on our way we became distracted and found ourselves at Chill.  After a delicious detour of fro yo and chocolate, we were back on our way.  When I signed in, the Siteman Center was pretty empty - I had an ity bity wait :).  While my tech was drawing my blood, she told me that they had one of their busiest days at the lab that they've had in awhile - so it was a great thing that I came later in the day!  Otherwise I would have had a 30-45 minute wait (and that would have been VERY annoying since it takes 30 seconds for her to draw my blood).  The best part of it all - the lab was so busy today, they ran out of parking validation tickets.  This is AWESOME because she had to go next door to the treatment desk to get a validation ticket for me.  Validation tickets take a percentage off of the price of parking.  Since I am usually there for under 10 minutes, my price leaving the garage is usually $1.50.  No, it's not expensive, but in my last 2 months there I would have spent almost $20 in just parking (as I see it, they are already getting enough of my money).  At the lab I get a validation ticket for 50% off of parking.  At the treatment side (where patients get chemo) you get 100% validation.  I left the Siteman center overly happy that my laziness got me out of paying parking.  Sweet day :)

As for the labs - my nurse coordinator called this evening to fill me in on my counts.  My white blood cells are still low, but not as low as last week!  But my neutrofills (the WBC that fight infections) are pretty low, as well as my platelets.  This doesn't mean a whole lot, just to make sure I stay away from germs, sickness and don't get cut (low platelets = bleeding).  If you're at all interested, this link is very informative about blood count lingo http://www.cc.nih.gov/ccc/patient_education/pepubs/cbc97.pdf.  The reason I have my blood counts tested every week is because the chemo, while killing the tumors, also kills blood cells.  My lowered counts reassured me that I should not be attending an upcoming float trip with friends (too many germs in that mucky water - pretty bummed about that) but I won't feel so guilty when I repeat my lazy day tomorrow :)

One Week to Go!

I consider myself a rather patient person; this is probably why I do so well with children.  But I have decided that I am becoming impatient with my health!  One more week and I find out if the drug is working.  It's honestly not constantly on my mind, I more or less become frustrated when I don't feel well and then that is constantly on my mind!  One more week...

The meds I started on last week are definitely helping!  My voice is 90% back - just a bit raspy.  My cough is under control and I am no longer finding myself out of breath.  And I have found myself much less nauseous - hooray!  As of Sunday I am back on a regular diet - I was for some reason not able to keep solid food down (although having vanilla shakes for breakfast and smoothies for dinner was pretty tasty).  I've been out of school this week enjoying a lot of R&R.  On today's agenda: pool time, labs, and happy hour.  Yup, I'm living the life.  I think my body needed this time off for sure!  Feeling good feels real good :)

Lots of good, lots of UG

Today started off great.  The kiddos were extra sweet, my to do list at school is winding down, and it was BEAUTIFUL outside.  I was feeling pretty good, up until my voice really started to give out.  Let me tell you, it is extremely challenging to breathe while singing Baa Baa Black Sheep in a whisper voice.  By the time lunch rolled around I was feeling pretty drained and yucky, and food sound absolutely unappealing.  My cough was also increasing, at times to the point of throwing up, which only increased my nausea.  I was DONE.  I called the doc for some advice.  In our 5 minute convo I felt suddenly relieved.  I had labs yesterday and it turns out that my white counts are down.  On the scale of low to good they are at the bottom of low.  They aren't horrible (like off the chart it's time for a blood transfusion low), they just are not very good.  So it made sense why I was feeling so crappy.  Once I had this knowledge it made me feel lots better - it's all about mind over matter.  Knowing WHY I wasn't feeling so well allowed for my day to carry on nicely, even if I was out of breath.  Unfortunately, the nausea did not leave with my new perspective on the day.  I picked up some new meds from the doc (in hopes to help my cough/throat/voice situation).  And of course the bottle says it must be taken with food to avoid stomach upset.  Well my stomach is already upset!  So now I have to force myself to eat something so I don't get sick while taking this new med... and eating something will only cause me to get sick so what do I do?!  I threw in the white towel and called Krissy.  After discussing what sounded somewhat appealing versus absolutely repulsive, I decided I needed something cold and creamy, but not sweet.  Yup, let's say it together, high maintenance.  Thirty minutes later, Krissy was at the door with coleslaw, potato salad, and pasta salad.  All three of which tasted good and have so far settled nicely.  On the note of a calm tummy, I think it's time for bed! 

Finally some R&R!

The month of June has been very good to me so far :).  Granted it's only day 1, but I feel like it's moving in the right direction!  I had my blood tests today and it always feels good leaving the Siteman Center looking and feeling healthy.  Although only the nurses knew I wasn't 100% healthy when they heard me talk!  It's been 3 weeks since I first lost my voice.  It's not 100% back, but I can tell it's trying!  It's pretty low and raspy, and my cough is still hanging around, but don't worry because I'm sure the high-pitched voice is just around the corner :)

I'm still struggling with eating appropriately, and I'm not sure if there is hope in that area.  With the sore throat I've had anything cold has been preferred.  But some days I feel stuffed after 500 calories and other days I'm still hungry after 5,000 calories.  I just don't get it.  

I have 2 weeks to go until we find out of the drug is working or not.  Until then I plan on taking it easy.  The month of May was a bit too busy with weddings, showers, end of school, friends in town, and endless social gatherings!  No, I am not complaining one bit, don't you worry, I love my life.  June still offers me more showers, weddings, and many more friends in town, but I'm looking forward to it all!  The month of May taught me how to say no if I need to as well as take a night off for some extra sleep.  Memorial Day weekend was the perfect ending to a busy month and an even better beginning to another busy month.  I spent the weekend either on the couch or at the pool.  I plan on making this a repeat.  Living the life :)