I wrote this post on 12/13/12, the day after my post-treatment scans. For some reason I saved my draft instead of publishing it so here it is, one month late. But that's okay, because being cancer free means I have alllllllll the time in the world :).
I have great news to share; I am still cancer free :). Ahhhhh, what a relief! This means I done. For real this time. I don't go back to see my doc for THREE MONTHS. Holy crap it's been almost 2 years since I haven't had to visit Siteman every 1-4 weeks. This is incredible. But along with that it is a bit sad - you have to understand that seeing someone that often who I share very personal details of my life with really does become a part of my life. It's bitter sweet to not see my oncologist and her team. I've been there longer than most of them. They were all so happy for me yesterday when I was scheduling my next appointment for 3 months. And no scans. And no treatment. Just an appointment. Wow... I've finally made it.
This journey has made me very emotional these days. I sent a mass text with the good news to a few friends who had been texting me yesterday. And let me tell you good news travels fast! Every time a new text came in with words of happiness and joy I teared up. It means so much to have so many people care for me. Seriously, sitting here right now writing this is making me tear up. There have been so many ups and downs I don't even know what these tears mean anymore! They just come!
So I have to be honest, because that's what I do, I'm not 100% happy yet. WHO KNOWS what my deal is. Like I've said before, life after cancer is tough for many. I have some reading and sharing to do to figure out what my deal is. But I have a few ideas.
(1) Going to Siteman is like having the red carpet rolled out for me every few weeks. Everyone is so nice and amazing - who wants to leave that?! I always loved the compliments that I looked too healthy and young to have cancer. Who doesn't like flattery?!
(2) I need to grow up. I seriously need to get my financial act together and figure out life. Everyone comments on how marvelous it is to put this all behind me and move forward in life. But I feel like it's pushing me backwards! This living paycheck to paycheck on a teacher's salary just so I can keep up with medical bills is down right depressing. I'm working with a financial adviser so I can actually feel like I'm moving forward in life. I'm ready to get my own place again. To return to my comfortable lifestyle. I see a second job in my future.
(3) Will it come back? I don't know. My doc doesn't know. Statistics say it's likely. Okay then, when? Will it be the Hodgkins? Will I develop something new from all of the horrible toxins I have put in my body? Will I start freaking out when it's time for my next scans? Will there be another treatment for me if I do relapse? Is the sky blue? Uggggg, the agony of the 'what ifs'.
(4) I might be done with treatment and scans, but I'm still living with the side effects from chemo. My stomach issues have only worsen. The chemo and the acid in my stomach still hate each other. I'm always having to eat to keep it under control = keep gaining weight. My doc prescribed some stronger meds so lets hope that helps!
(5) I have become a broken record in explaining why I'm so tired these days. First of all, I do not like to be tired. I get bummed out when I head home after a gathering on a Saturday and am in bed by 9pm. Second, it's not "sudden" like people have been questioning. It's been gradual, but I was good at pushing through for awhile there. This need for extra sleep was expected to occur - it' amazing it didn't start hitting me hard until I hit the 12th treatment. I'm frustrated because I have friends who are not exactly understanding the fact that I'M EXHAUSTED. So when I say I'm too tired to do happy hour after work or want to leave a Saturday night gathering by 8:30 do NOT ask me "Why? Aren't you done with treatment?" Yes, I am done with treatment, but the effects are lasting. Yes, I was out partying only a few months ago but those days are over - for now. I need rest. So leave me be - for now. I promise, I will return.
I'm still mixed with a lot of emotions. And a lot of physical annoyances. But I have to tell you, I'm breathing easier today. Having these scans behind me has made today that much better. I thought I was handling the suspense up to yesterday just fine until my nurse called me back in to recheck my vitals - apparently my pulse was through the roof. Nervousness? I am SO good at telling myself it's all going to be okay that I don't even realize how stressed I really am. Of course I cried all the way home. And I fell asleep by 7:00. That's right, I slept for 11 hours. Why? I have no idea. Looks like my body was more stressed out about the suspense than I thought.
I remember writing over a year ago about how scared and frustrated I was feeling. The journey of being a cancer patient is annoyingly tiring. All I wanted was to see the light at the end of the tunnel. Some days it seemed brighter, but others it was looking pretty dim. Today, I'm stepping out of that tunnel. I'm out of the dark and in the light of a new world. A cancer-free world. I did it! I beat cancer!
Thursday, January 17
Monday, December 10
12/12/12
December 12, 2012 is being described as a very special and lucky day. It's the last time we will see a triple sequence such as this in our lifetime. So I guess that marks it as pretty cool, huh? I'm going with the thought that 12/12/12 is going to bring everyone good luck, including myself. This Wednesday, 12/12/12, is my first round of post-chemo scans. I was a bit nervous about it when I finished treatment, but I think I've had enough time to sit on it for the stress to go away. Well, most of it anyway. I've probably played every possible scenario of what can occur in the doctor's room on Wednesday. Crossing fingers, toes, eyes, arms, and knees. And sending a few prayers up as well. You're all welcome to join me :)
Thursday, November 15
DONE!!
Yup, I'm DONE!!! It's been 20 months since that horrible phone call. I cannot believe I've been living this uncomfortable lifestyle for so long. It is an incredible sigh of relief now that it is all said and done. It's time to move on in life!!!!
Wednesday felt like my birthday, I was blown away with love and support. The emails, text messages, phone calls and of course facebook reminded me all day long how lucky I am to have so many people rooting for me. Coming home to flowers before treatment was icing on the cake :)
I was in tears all the way to school on Wednesday, so emotional and excited that the day was finally here. Finally here!! I was bouncing in the car as Krissy and I drove to Siteman. My doctor and I hugged several times, both eagerly excited to say, "See you in 6 weeks!" It has been almost 2 years since we've been able to say goodbye for longer than 4 weeks. From my doctor's office I danced all the way to treatment while singing Anita Ward's "Ring My Bell". While we waited in the treatment waiting room Amy joined us and also had "Ring My Bell" stuck in her head. Mind you Krissy and I headed to Siteman earlier in the afternoon for an early appointment meaning we were stuck with patient "traffic" and waiting for labs, doctor, and treatment; something we are not use to after being spoiled as the last appointment of the day for the past year! So at this point Krissy was about to hurt me for continually singing about ringing the bell. She shared her excitement with DELICIOUS chocolate from ka-ka-o.
Treatment was anything but exciting, especially considering it was Halloween. Since it was a holiday most of the regular nurses were off with their kiddos. Treatment was also swamped. My favorite MA was so busy she barely had a moment to stop by and chat. My substitute nurse thought I was pulling one on her when I told her it was my last treatment. I told her a year and a half was enough for me! It was disappointing at the end when I was done - the nurses are suppose to throw a confetti shower for you and come watch you ring the bell. These substitute nurses had no idea and my farewell was rather mundane. But Amy will beg to differ that the biggest disappointment of all was that the hot chocolate machine was broken, ha! While leaving, my MA chased us down with hugs and tears and the congratulatory t-shirt and certificate. It was very bitter sweet leaving treatment.
Krissy skyped Katie and we had a bell ringing party. The enchanting bell. It was everything I dreamed it would be. We headed home and feasted on Rich & Charlies, the best comfort food ever. In my true style I was asleep by 8:00 and there I stayed in bed for the weekend. For the last time. Ever.
Wednesday felt like my birthday, I was blown away with love and support. The emails, text messages, phone calls and of course facebook reminded me all day long how lucky I am to have so many people rooting for me. Coming home to flowers before treatment was icing on the cake :)
I was in tears all the way to school on Wednesday, so emotional and excited that the day was finally here. Finally here!! I was bouncing in the car as Krissy and I drove to Siteman. My doctor and I hugged several times, both eagerly excited to say, "See you in 6 weeks!" It has been almost 2 years since we've been able to say goodbye for longer than 4 weeks. From my doctor's office I danced all the way to treatment while singing Anita Ward's "Ring My Bell". While we waited in the treatment waiting room Amy joined us and also had "Ring My Bell" stuck in her head. Mind you Krissy and I headed to Siteman earlier in the afternoon for an early appointment meaning we were stuck with patient "traffic" and waiting for labs, doctor, and treatment; something we are not use to after being spoiled as the last appointment of the day for the past year! So at this point Krissy was about to hurt me for continually singing about ringing the bell. She shared her excitement with DELICIOUS chocolate from ka-ka-o.
Treatment was anything but exciting, especially considering it was Halloween. Since it was a holiday most of the regular nurses were off with their kiddos. Treatment was also swamped. My favorite MA was so busy she barely had a moment to stop by and chat. My substitute nurse thought I was pulling one on her when I told her it was my last treatment. I told her a year and a half was enough for me! It was disappointing at the end when I was done - the nurses are suppose to throw a confetti shower for you and come watch you ring the bell. These substitute nurses had no idea and my farewell was rather mundane. But Amy will beg to differ that the biggest disappointment of all was that the hot chocolate machine was broken, ha! While leaving, my MA chased us down with hugs and tears and the congratulatory t-shirt and certificate. It was very bitter sweet leaving treatment.
Krissy skyped Katie and we had a bell ringing party. The enchanting bell. It was everything I dreamed it would be. We headed home and feasted on Rich & Charlies, the best comfort food ever. In my true style I was asleep by 8:00 and there I stayed in bed for the weekend. For the last time. Ever.
Krissy at the foot of my bed ordering our favorite for dinner - Rich & Charlies. |
Ok, so I look rather exhausted these days but it's my LAST treatment!! |
Time to ring the bell! |
Sunday, November 4
No Longer a Fighter
There are instances in life I find myself taking in a moment feeling invincible. Unstoppable. No matter what you throw my way, I have the strength and mindset to defeat. There was a moment a few weeks ago on a very windy day I was taking a walk around the neighborhood with a few of my kiddos. A gust of wind blew down the street strong enough to make the kids squeal with glee while we were showered with yellow leaves from the trees above. An older man was sitting on a stoop nearby laughing with us while everything else in the world seemed to stop. Everything felt right in the world. No sadness, no pain, only pure bliss. It's amazing watching these young children respond to the most simplest of moments that most of us take for granted; or don't even notice.
There's a song on the radio that gives me the same feeling. The song is not about cancer patients, but any cancer patient sure can relate to the lyrics. Gym Class Heroes featuring Ryan Teddy: The Fighter.
Until the referee rings the bell
Until both your eyes start to swell
Until the crowd goes home
What we gonna do ya'll?
Give em hell, turn their heads
Gonna live life 'til we're dead.
Give me scars, give me pain
Then they'll say to me, say to me, say to me
There goes the fighter, there goes the fighter
Here comes the fighter
That's what they'll say to me, say to me, say to me,
This one's a fighter
There's a song on the radio that gives me the same feeling. The song is not about cancer patients, but any cancer patient sure can relate to the lyrics. Gym Class Heroes featuring Ryan Teddy: The Fighter.
Until the referee rings the bell
Until both your eyes start to swell
Until the crowd goes home
What we gonna do ya'll?
Give em hell, turn their heads
Gonna live life 'til we're dead.
Give me scars, give me pain
Then they'll say to me, say to me, say to me
There goes the fighter, there goes the fighter
Here comes the fighter
That's what they'll say to me, say to me, say to me,
This one's a fighter
This song would remind me I'm a fighter. The scars and the pain only made me want to push harder. It made me want to show the world that I am strong and I can do this. It's hell, but I can do it. I heard the song this morning and for the first time the feeling of empowerment did not overwhelm me. I wasn't rushed with emotions and determination. It caught me off guard and I just stood in my tracks as I listened to the lyrics. Then I smilied.
I'm no longer fighting. I won.
Tuesday, October 30
TOMORROW!!!
It's here. It's finally here. Holy hell I cannot believe it's actually here! It has been a long journey... one year, eight months, 2 weeks, and 2 days to be exact. But it's real. That giant lump in my throat continues to remind me that it's real. I'm finally going to be done with chemo!!!! Tomorrow I will ring the bell at Siteman officially marking the end of my treatment. My doctors have no guarantee what is to be expected in my future, but I plan on ringing that bell tomorrow to announce that I am done with chemo FOREVER!
Friday, October 26
It’s coming to an end.
For the past couple of weeks I’ve been having cancer
dreams. Not exactly sure why, I really
do feel indifferent about my soon-to-be life after cancer. Although it is a big deal to some, there are
support groups just for those who need help coping with the fact that cancer is
over. Yes, it sounds very strange,
something you’ll never understand until (A) you have cancer and (B) you
win. Let’s hope A never happens to
you. But if it does, I sure do hope you
get to B.
Last week I had a dream that my cancer came back. I was in a different hospital with beds lined
up in a row in what could have also been an airport terminal. My friends were there, but too far away and
they didn’t have time to visit. My
sister was there, but kept leaving me. I
made friends in beds nearby, but after time they all stopped talking to me. The doctors who were doing my testing couldn’t
look me in the eye because it was such bad news and they didn’t want to have to
tell me. Then the guy a few beds down
from me had his legs amputated and his bandages were bleeding through. The woman next to him yelled at me for
complaining when I looked totally fine and that guy was bleeding. The dream ended with me crying all alone in
my hospital bed. HOW HORRIBLE!!
In another dream from earlier this week I was going through testing again
but I didn’t need it because I already knew it was back. All the patients around me were standing with
their poles wearing long colorful gowns, sad for me. But I was cheery and continued to reassure them
that it was all going to be okay.
In last night's dream my friends were all in a party house attached to a cancer wing. I was sneaking back and forth between the party area and the cancer wing. The party house was designed with wood texture, filled with tons of people, trendy furniture, and a rooftop party that never ended. The people in the house continued to remind me I needed to take it easy and rest. The cancer wing was a very pale cream, blue, and yellow overloaded with cancer patients. They were all much older than me and looked much sicker. I was the youngest one there. They nurses were complaining that they were understaffed and needed more help. Every minute another patient died from a stroke so I was going from room to room helping the nurses. I had cancer, too, but since I was alone and looked healthy they were going to wait to treat me.
I’m not sure what’s up with my subconscious?! There have been too many all similar to
these lately. I do know for sure that I’m
looking forward to being done with ANNOYING side effects and regaining my
energy. I’ll figure out what my brain is
trying to tell me once I’m really said and done with treatment and my
post-treatment tests. I do my first set
of scans 6 weeks after my last treatment.
It sure will be the best Christmas present a girl can ask for!
Thursday, October 25
It was one of those mornings!
I’m actually a rare breed who looks forward to Monday’s. I love seeing the kiddos refreshed and ready
for school. Their happy energy gives me
an extra pep in my step. But thing is,
they already wore me out on Sunday, so Monday was suddenly a different story! I
spent Sunday morning at school with my families sprucing up our school yard,
something we do a couple times a year; it was nothing new to me. But coming home for lunch and feeling 100%
exhausted was! I am not made for
physical labor these days. I spent the
rest of the day on the couch. I made a
trip to Target in the evening and then found my bed. It
wasn’t just the exhaustion as much as it was my numb fingers that were
bothering me. My hands are staring to
struggle again. I have achy fingers with
the once again non-string cheese opening fingers. Yard work definitely strained my hands more
than I had expected!
So there I am Monday morning, wiped out, dragging, trying to
get myself together for an unusually early morning at school. I pride myself on being up and out the door
in 15 minutes before school. That was
not so much the case on Monday. As I was
getting dressed (with clothes picked out the night before) I notice my fingers
are still numb. Eh, no biggie, I’m
getting use to this fact with life these days.
But then I found myself in a predicament; I couldn’t zip my pants. Yes, they are a big snug from the weight I’ve
put on, but come on, they aren’t that
tight! My fingers weren’t strong enough
to pull the zipper up. I’ve created new calluses on the side of
my index knuckle as well as the skin in between my thumb and index finger from
discovering new ways to open things. But
neither of those worked. I found a hook
and pulled my zipper up that way. But
then CRAP, I could not get my pants buttoned.
I tried every position possible but that damn button was not going in the
hole. My fingers no longer have the
skills to push a button through a hole. So
solution? Find new pants. ARG, this is so making me late. I found pants with a button that didn’t stand
a chance to my weak and measly fingers and finally made it to school.
School was actually great, packed with a Grandparent
Breakfast, playing in the rain, and happy-go-lucky children. But come nap time I hit a wall and wanted so
badly to curl up with them. Many times I
do in order to get some much needed shut-eye during nap time, but I was afraid if I took
a nap it would make me feel even more groggy.
So I pushed through like I do best and found myself in bed at 5:00 after
school. My fingers and I were beat! It was definitely a frustrating day, but of
course no real complaints. Lesson
learned: invest in more leggings!
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