You know how sometimes when you are driving and you see an object or a pothole or something in the road ahead and you swerve around it to avoid the rough ride over it? Well how about when you don't see those objects and you roughly run right over them, blind sighted.
As my mom wrote yesterday, I spent the last few days up in M50 for a fever admission. It was a miserable stay just because I wanted to go home and I got a shot to boost my white counts that came with extreme bone pain that oxycodone and morphine couldn't fix. It was a rough few days and yesterday I was elated to go home around 3 pm. The trade off was, if I went home, I had to come back today to get a blood draw to check my counts to make sure they continued to go up. I gladly accepted that deal and came down today at 11 for that quick poke and planned to head to Greg's from there. Well, I was blind sighted with the way my day was about to unfold. I went in and told my nurse who was going to do the blood draw, "Hey just so you know there's an area on my incision that looks a little weird. Just wanted to let you know." That turned into, "Let me get one of your nurses real quick, that doesn't look so good." Two of my nurses came in along with various other nurses and doctors in the next few hours to take a look at my now infected looking spot of my incision. We paged Dr. Joyce, my surgeon, because this is now "his leg" and he was out of town. I recommended we page Dr. Wuerz, his resident (my assistant surgeon), and he was off campus at another Clinic location. He actually left his location and came here to look at my leg. He determined it definitely is infected. He swabbed that area and sent it to labs along with my now accessed port blood work. He took pictures and sent them to Dr. Joyce and then got on the phone with him. I was having a rough time, crying with my nurses over this span of about 2 hours. 30 minutes later, Dr. Wuerz came in and told me Dr. Joyce said I had to be admitted.
To put it simply, I lost it.
Dr. Wuerz, my nurses and other doctors all were there for me and I was updating my parents who by now were packing my bags and my Dad was coming down. My mom has a cold so she wanted to stay away from me until she feels better. I couldn't calm down. My time in S20 proceeded to get worse when Dr. Wuerz told me the plans for the next few days. He told me that first, they have to take a sample of the fluid in my knee because they have to make sure my new parts aren't infected. Next, Dr. Joyce will be home this weekend and Monday, instead of starting chemo, I have to go in for SURGERY to clean out/remove the infected area and fix me up. When I say surgery, I will go under the knife in the OR, but this infected area is only about an inch so it isn't major. The docs just warned me it might be a hole until it heals from the inside, out. He then told me I will be in here for about a week and start chemo towards the end of next week or until further notice when the surgical fix is healed.
What. I came in for a quick poke in the arm. Not all this.
At this point, I couldn't take it anymore.
Dr. Wuerz came in again with a kit to get a fluid sample. I laid down on the table and two of my nurses, Holly and Becky were in there holding my hands while I was shaking and crying. The numbing shot stung very badly and didn't even numb a lot. I have a pretty high tolerance of pain, and the pain I felt from the syringe poking under my knee cap and around all the tender parts of my knee was unbearable. I was yelling and crying and squeezing their hands and I almost involuntarily kicked him. That was awful. After calling some friends and my parents trying to call me down, I got the okay to head up to M50 for admission. I just couldn't handle it. My best friend Ali and her mom Connie came and hung with me which really helped calm me down, great friends are so special in life. We then got up to M50 and I got hooked up to antibiotics and there are a few kinds. They are treating it right now as if it is some kind of resistant staph infection (the worst kind) until the cultures come back to determine what it really is. Also, to add to my fantastic day, I just got put in an immobilizer brace because the more I bend my knee, the more I re-open the infected area. I will be in that for about 6 weeks or so, and it becomes more crucial after surgery.
I can't explain to you the emotions that flooded through me when all this began to unfold. Blind sighted like driving over a bump in the road, I couldn't handle it. I just left here yesterday, and I'm back in the same room for about a week. My chemo is now delayed until the incision will heal after surgery, and I am so frustrated I am about to explode. My dad is with me tonight and I know I'm not really a joy to be around right now, he's a saint. He keeps telling me this really is just a bump in the road, one I couldn't swerve. That's life I guess. Goodnight everyone, from Em and Todd hanging in M50, we wish you a better night and better days than us. Hahaha
Well...
It is momma and daddy-o.
Most things are following the course and along that line, nothing is ever "easy". Likewise, we don't sit around too much and have had zero time to keep up with posts.
As brief as we are able, we can share that Em did a nice job recovering from her June 11 doses of chemotherapy. She attended PT with Melissa and was doing well. She received an invite from Greg and his family to go to their lake house and did. While there, she did well, ironically, Greg did not. With a houseful of family and activity, he asked if Em could take him to the hospital. Turns out, Greg had acute appendix -itis.... Strongly recommended that his appendix comes out. So, being in a remote location is not typically known to have the best hospital care. Em managed to negotiate the next steps with docs and Greg's parents on the phone. She drove him directly from med center to the Cleveland Clinic ... about a two hour ride. They checked in on Friday night, he had laproscopic surgery and Emily got to wear a CLEVELAND CLINIC VISITORS badge. By all standards, it was her badge of honor. While in the waiting room at 11 pm on Friday night, she had the true pleasure of seeing Dr. Joyce AND Dr. Wuerz walk by on separate occasions. They were both taken back by seeing her, as were we, since this was a new part of the Clinic at a strange time and under strange circumstances. Bravo to that team, winding down their day that began at 5:00 am with a stack full of medical files in tow. Greg was discharged on Sunday and rest was had by all.
In the midst of all this action, baseball rolls on for Joe and Mackenzie had a wonderful Storad tour of Italy for 10 days. She is so fortunate to have a teacher like him and had great pictures and stories to share with us about her Italy adventures. Pretty sure there were at least 14 trips for Gelato.... among the ancient ruins, hills of Tuscany and along the shore of Lake Garda. We are so pleased to have provided this to her, especially since being around home at the moment is no picnic.
Em had to trade in her VISITORS BADGE for an admission bracelet on Tuesday (yesterday) at 4:30 am. She had a fever that just reached the threshold of "concern" so we made the fateful call to the doctor on call in the middle of the night. What a complete bummer. This was supposed to be "week off" . We knew that from her visit to the clinic on Monday, her blood counts are low, as predicted.... but that combined with a fever, sets a potential scenario for trouble. Off we went... here we are.
Since admission at the Cleveland Clinic, we have realized how busy things can get here. Every bed is full and there are new admitted patients on Emily's floor over stretched staff. They manage to get it all done, but they are at capacity.. just like us. Emily had broad antibiotics and the fever quickly stayed below 99.something and is gone. Since her counts are low, they gave her a "booster" of "G" which helps jump start white blood cell production. Good to have, painful to live through. By 7:00 pm last night, Em was in about the highest level of pain that she has had through the whole "little c" ride. We agree, Em has a pretty high threshold for pain, and the lower back pain at the base of her tailbone was so uncomfortable... a little morphine + a little oxycodone + a little morphine and more oxycodone.... that is a lot for Em, but finally got comfortable enough to sleep.
Good news just came in the door... along with Dr. Carl.... she has one more dose of antibiotic and then she gets to go HOME! She will report back to the clinic tomorrow to check her blood levels.... she needs to be in the position to restart and get going with chemo on Monday... yippee... other folks can wear the VISITORS BADGE again soon.
Okay I am so sorry for the gap of time since I last posted. Well, my last post was pretty much coming from a flood of emotions as I started to dive into what should be the final victory lap in my battle of cancer.
Well, I can report, chemo is and was exactly what I was expecting...not fun. I can finally write about this experience because until today I was struggling with the nausea, today, I'm just exhausted.
So Monday, I began my day with a hearing test which was fantastic. The cisplatin (yuck!) has the tendency to cause hearing problems for up to 2 years after treatment! I guess many hearing tests will be in my future. Anyways, my hearing is great (despite what my parent would say). So after that we checked into M50...all of us...mom, dad, nonie, papa, and me. the chemo started first with doxorubicin which was only 15 minutes. Then an hour of fluids before that big bad bag of cisplatin came in. That was a 4 hour drip, and I repeated the same schedule on Tuesday. Wednesday morning I actually was discharged from the hospital, it was nice to spend my crummy time at home this week versus in the hospital.
Although none of my treatments are "easy", this past treatment, which is usually the worst, went much smoother than we expected?! Normally I can barely move, lay in bed all day and can't keep anything down. I haven't gotten sick once this whole week! Given, I obviously wasn't feeling good, but MUCH better than I usually am! I credit this to the fact that my tumor is gone-zo so the chemo has nothing to harbor in or severely attack, again, just a theory. I have been walking around, hanging out with some friends and relaxing this whole week! I am taking this streak of luck and enjoying every second of it!
Today, I could barely stand at mass with the fam. I am so so so fatigued and exhausted! I thought I was over the crumminess but I've been laying in bed all day. I guess that's what I should have expected. I still have the needle accessed in my port to get connected to fluids over night, that definitely has helped. I head back to the clinic on Tuesday for a check up and to get the needle out.
On another note, I have to say happy father's day to all the amazing dads out there. I'm so fortunate to have such an amazing role model and friend in my life, my daddyo, Todd. Papa, my grandpa is also here to celebrate fathers day with us, and he is also someone I look up to and strive to live like. Both of these amazing men and my dad's father, grandpa, have shown me how to live freely, work your hardest, and love unconditionally. To all of you missing your fathers on this day, you are all in my prayers and know they are sending you love always, no matter how far, even from that place up in the sky. I hope you all had an amazing week and another great one coming up. Sending my love two-fold to all of you. And Dad, I wouldn't be the person I am today without you. I love you to the moon and back, thank you for all that you do for me Kenz, and joe. Especially in this time, I lean on you and you are alway there.
Keep your heads up and enjoy your evenings with the ones you love. I know I am.
Love, Em
So it's 2:33 and I just woke up about 15 minutes ago and can't fall back asleep. There are so many thoughts racing through my mind right now...there aren't enough words in the dictionary to explain how I feel.
This morning, I woke up at my friends house around 9 am with another mini anxiety attack thinking about whats to come tomorrow...this upcoming morning. I feel so good right now, things are going great and I am making great progress with walking, bending my knee, and not to mention, my hair is growing back fast! I even have eyelashes and eyebrows which I've really missed. In the morning, with chemo beginning, all these things will be lost. I know it's temporary and I keep telling myself I need to just put my head down and push through these next 20 weeks. Truthfully, I don't want to do any of it. The nausea, the sickness, the mouth sores, and all the other side effects of these powerful drugs are the worst feelings in the world. I can't explain it...it's truthfully miserable. It's just as bad if not worse than anything you imagine cancer and chemotherapy to be, and I guess only people who have gone through it would understand. My family and all my friends have to sit and watch me go through this and watch my body change and get weaker and weaker.
I feel like I could barely handle the first 10 weeks and now going through 20 will be even harder. I can't wait for this all to be over, to get my life back, to be "normal" again. February 10th was a day that changed my life and my parents and I sat hearing my diagnosis not knowing what the future held. Now we can see it and we know what to expect. I guess I don't really have a choice about tomorrow, all I can say to sum up my feelings is that tonight after a great family dinner at Momocho in Ohio City near downtown, Greg and I were driving home and I asked him to stop at Gesu, my Church, before we headed home. We sat in the quiet church and I cried with him by my side, and prayed for the strength mentally and physically, patience and peace of mind, and blessings for my family, friends, and myself to get through this. But most of all, I prayed for a cure for cancer.
Yesterday was my first session of physical therapy outside of the hospital. Dr. Joyce recommended me to go to physical therapy for a few times in these few days before I begin chemo again on Monday...taking advantage of the good days...
My mom and I went and she graciously stayed for the whole appointment which was really nice. We began by explaining my surgery and how I am feeling. Then, Melissa (my physical therapist), asked "What would you like to get out of this?" and my immediate response while choking out a few tears was, "I want to be normal again. I want to be normal and feel normal. Most of all, I would like to be able to cheer again." I then explained my background at Saint Louis University as a Saintsation and she told me her brother just graduated this May from the 6 year Physical Therapy program at SLU! Small world huh? My best friend Alex is in that program too...that will be you in 5 more years babycakes! The best news I've heard in awhile followed after our little chat about SLU. "You are going to be perfectly normal once this is over. It may take a little longer because you will be going through chemo, but you will be able to cheer again." MY HEART EXPLODED! I was so excited! It would be my dream to be a part of the Saintsations in any way I could, but to hear I could stunt and sit indian style on the sidelines and cheer just made my day! I was so excited!
By the time I come back to school in January of 2013 for the spring semester, I WILL be cheering again. That is my goal. It's going to take some hard work, but I believe if you can put your mind to it, you can do anything.
After the talk, we went out to a table where Melissa evaluated my muscle mass, my range of motion capabilities, all these tests, on both legs to see where I am at and what (retrospectively) I would like to be at when I'm done (my "better leg"). Melissa, my mom, and I were absolutely amazed at how strong my new leg was. I was doing exercises in that evaluation I never thought I could do. But somehow, I was doing them and I am only slightly behind my "normal" leg in a few areas. None of us were expecting that at all. We thought I was going to be starting at ground zero. So crazy. After that was all finished, Melissa gave me some exercises to take home and I iced for a few minutes. When we got home I fell asleep for a few hours (apparently I was wiped out?). Overall, it was great to hear all the encouraging news. I am headed back today in a few hours for another session and I am scheduled for another session Monday morning before I head to the hospital for chemo.
Moving forward, getting through all this is exactly what I need. The light at the end of the tunnel is visible and I can see what the end result will be, and I couldn't be more excited.
P.S. Check out the background...changed it in honor of Mackenzie headed to Italy in 2 days with her Latin class! Can't believe I was on that trip 2 years ago...So excited for you Kenz!
Hello and happy Tuesday to all my friends! A little reminder from my Saintsational friend Ashtyn reminded me a blog update is definitely in order. So much to talk about, prepare yourselves.
Today was a long day at the Clinic with many tests and appointments. Our day began at 11 with a hearing test to make sure the chemo hasn't affected my hearing. So, Dad and I rolled down Carnegie in the Jeep with the top down to start our day. Rocking a nice pair of Livestrong shorts and an Ace bandage, I was ready for the day. The hearing test was great, despite my convinced mind that told me I did horribly. No hearing loss for this girl! (In fact, I improved in some areas? Go chemo?) Next my dad and I took a break at ABP a restaurant at the clinic and it was the first time eating at that specific location since my first day down there on February 13th. That was the day I saw the restaurant and cried because we have them at SLU and it made me miss school even more. I was bundled up in a wheelchair with my leg propped up and in MASSIVE amounts of pain from the biopsy. So much has changed since February. I asked my Dad to take a picture of me outside the restaurant again.
After lunch, we went over to radiology for an x-ray of my new leg and boy was that cool! It was INCREDIBLE seeing the extensive work that was done to put my leg back together, tumor free. So many thank go to Dr. Joyce and his team, the metal knee and half femur look amazing and seem to be working out just great! After the X-ray, I had an appointment with Dr. Joyce for the first time post-surgery. My mom made it down just in time for that so we were all there. Jane, Dr. Joyce's assistant, led us back to our room and I noticed it was the exact same room we were in the first visit on February 13th when I met Dr. Joyce. Today was filled with lots of Deja Vu. Jane took half my stitches out and after looks from a few doctors and then Dr. Joyce, she got the okay to take them all out so now I am STICH FREE! Boy does it feel good not to have to wrap my leg or or deal with the itchiness! Dr. Joyce was very please with my knee bending (despite my anticipations) and also thought my stitches looked great. Minus a few spots of little scabbing, its just one little line and will heal fantastically! Because of my great results of dead tumor cells and the little scabs on my incision, Dr. Joyce and my oncology doctors decided it was a good idea to wait until Monday to start chemo. This will give my incision time to air out and further heal until the chemo starts. Frankly, I do not mind one bit having a few more days off and getting on a "Monday schedule" for doctor/chemo visits. (It frees me up for the weekend!)
Unfortunately though, I can never have a day where everything goes smoothly. I feel something bad always has to happen just when you think you are in the clear. As we are leaving Dr. Joyce's office with great news, and being allowed to be full weight bearing and walking, my bad leg's foot got stuck on the carpet and I stumbled forward, tried to grab my dad, but instead hit the ground with a fast hard bend on my knee. I felt dizzy and instantly in pain as I tried to hold back tears making my way to the nearest chair. My mom called Dr. Joyce out to me and he decided that no damage was done as far as his work on my leg. Unfortunately, I pulled or strained all the muscles in my quad with the fast bend of my knee so my whole thigh is in massive pain. I can never cut a break can I?
We got home, threw some ice on it, took a shower with my new stitch-free leg, and it was time to turn around and put a happy face on for Joe's 8th grade graduation! He is the last of the Evans' to graduate from Gesu so it was a bittersweet evening. Joe looked great rocking a bow tie and we got great pictures after the ceremony. CONGRATS TO JOE AND ALL OF HIS FRIENDS! He is Ignatius bound for next fall, GO CATS! After we snapped some pics, Joe headed off to the graduation dance and Mom, Dad, Kenz, Mark, Nonie, Papa and I headed home for a family dinner. We reminisced on my graduation and Kenz's and talked for a few hours.
It was then that I realized I have a pretty special family. Despite my great news day, the little spill I had and the pain I was in from those strained muscles really threw me a curveball and I was not in a good mood. They picked me right up as they always do and turned my frown upside down. I was so proud of Joe tonight and so happy for my parents. It was a special moment for us.
I also reminisced on my life in the last year. On year ago today, it was June 5th, 2011, my graduation from Walsh Jesuit. It was a warm sunny day and after graduation, my family had a little party in the back yard with some family and close friends. I fell asleep that evening with my bag packed for an early morning flight out to St. Louis for my dad to take my first steps on SLU's campus as a true Billiken for orientation. We flew out on June 6th just in time to make it for a 9 am start time for orientation. It was on that day I made some of the best friends I have today. It was the day I met my roommate, Emma, and her dad. It was the day I met Kaitlin and her parents. It was the day I met Ali and her parents, all of these girls are some of my closest closest friends. I love you all. It was the day I met some of my best guy friends, Greg and Kevin from Texas by playing them in a corn hole game with Emma. To sum it up, I had a blast and I met some amazing people those two days. A few days later I would meet my other best girl friend, Alex the dancer at our Saintsations summer camp. It is unreal how much has changed in one year.
As I sit here and think about my year and how big this day was last year to me, I never thought I would be writing this blog, about my updates on treatment for cancer. I never thought I would be out of school, I never thought a lot of things I guess, but LIFE GOES ON. Despite these challenges and struggles, we grow and advance every day. We become better people from the simplest of things on a daily basis. Meeting someone who could be your lifetime friend, a hello from an old one, or a hug from someone you love. I am convinced that if you open your heart and your mind, you can be anyone do anything you want and you have the resources laying right in front of you. Take advantage of them and live your days because everything changes in seconds.
I put together a little collage to show you some of the changes. On the top row I have June 5th, 2011 and June 5th, 2012. Two graduations, mine and Joe's. On the bottom row is where I started from and where I am now. Sitting in front of ABP in my chair and completely unsure of the future, my first visit to the Clinic on February 13th. In the bottom right corner, I am proud of say I am standing, on my own two feet, in front of ABP on my neg leg and TUMOR FREE. Let me just say, you all have gotten me here. Standing on my feet again, and for that, I am forever grateful. Although so much has changed in a year, it's changes for the better. Enjoy every second of life because it will pass you by so quickly. I wish you all nothing but love and peace. Goodnight!
