Wednesday, October 15, 2008

Our First Cancer Fighter Story by Deena

Here is our first Cancer Fighter story entry! Hope you all enjoy:

Why am I so tired all the time?? I exercise every day, eat pretty well, am aware of everything that I put into my body. It must be stress. I work too much, try to do to much, that’s what it is. Ater all, I’m 33, not as young as I once was. I just need to slow down.

Why do I have this blood in my stool? Well, it’s only happened a couple times, it’s probably nothing. Oh, it’s probably just an internal hemorrhoid. I’m only 34 it’s not like I would have cancer or anything.

Why do I feel this urge to go to the bathroom? Geez, the toilet is filled with blood. I don’t have any belly pain, I don’t even have any rectal pain, and my stools seem fine, I probably ate something that didn’t agree with my intestines….yes, that’s it, it was something I ate. I’m only 35 it’s not like I would have cancer or anything. I’m a nurse, I think I would know if I had cancer.

What is going on? Why are my stools becoming pencil thin? Why am I having these gushes of blood and why is my back hurting so badly that I cannot get any relief no matter what I do? Why do I want to sleep all the time and where has my energy gone? Why am I so thin? There is something wrong, I’m sure it’s stress related, after all I’m starting my own business, building a new building, going through a divorce and I’m only 36, it’s not like I could have cancer or anything………..I need to at least get a colonoscopy to see what’s causing this.

Groggy from the Versed and sedation I hear, “draw a CEA stat, get a CBC stat”……what? What? CEA? You think I have cancer don’t you?? She wouldn’t answer me, she said “I will talk to you in my office on Tuesday.” Tuesday? It’s Friday, I can’t wait until Tuesday, “you know I have cancer don’t you?”. She still wouldn’t answer me, and the last thing I told her was, “Don’t waste my time please.”

That was my colonscopy March 9, 2007. The longest weekend ever followed. I knew what was happening to me, I knew it was cancer. I went shopping on Saturday and bought clothes that I would take with me to the hospital for my surgery. I knew the drill. I was a nurse. I was educated and knew the symptoms yet completely avoided reality for at least 4 years……I was my own worst enemy.

The days that followed were like living in another world. How was I going to tell my family? My friends? How would anyone ever love me again in a sexual way after this surgery? How would I even let anyone? What was I going to do living all alone, going through chemo, radiation, and this surgery that I would have to have? I’m too pretty to have cancer, I’m too happy, too healthy, to physically fit, nobody in my family has ever had this. Why me? What did I do wrong?

Tuesday, March 13th I got the official diagnosis. “Rectal Cancer.” “Very large tumor that will require extensive treatment.” “You need to start looking for a surgeon, I can recommend one but you are more than welcome to find one also”. “You will see the oncologist tomorrow, I have set it up for you.” What is happening? This cannot be real, it must be a dream. I have to tell my dad.

I drove myself back to my company office where my dad was. He took one look at my face and knew it was bad. I couldn’t even speak I just cried and he held me and all I could udder was “I do not want to die”, “I’m not ready to die”…..he just held me and cried with me…..this was indeed one of the worst days of my life and honestly everything after this day was not as bad as uttering the words to my dad, “I have cancer.” No child should ever have to tell a parent these words, ever.

I felt like an animal being herded through gates and given commands as to what to do next. I was told where to be, when to be there, and how to go about it. I was never good at being told what to do, I am a natural leader, not a follower so none of this came easy for me. Giving up control over my life was not going to come easy for me, I needed to have some sort of choices, some type of control, just a little, but…..cancer took that from me, at least for the time being.

I was to report on Mondays at 8 AM for my 5FU hookup and wear that for 24 hours a day until Friday morning at 8. Also on Mondays, Tuesdays, Wednesdays, Thursdays, and Fridays I would go for my radiation treatments which only take a few minutes but eventually will wreak havoc on your body…… nobody can prepare you for what will happen during these 5 weeks. Although they try during those ‘mock-up’ radiation sessions where they get you ready for the actual radiation, you are never really ready for the outcome. I did pretty good up until week #4 when the burning got very bad, I could barely pee and having bowel movements was like passing razor blades, the burning from urination was so terrible I asked the doctor to prescribe for me some xylocaine jelly to put on the areas just so I could urinate without crying. I spent more time in the tub than any human being should in an entire lifetime……the cool water seemed to help the burned skin and also help with healing…….

If I just get through this I can get through anything. The 5 week course was over, I got a nice certificate of completion from the staff and I was a free woman for a few weeks until I was okayed for surgery. I found my surgeon, she was at U of M and she was who I wanted to do my surgery. I couldn’t get in to see her so my radiation oncologist made some calls and go me in……..she was going to do it. I had to meet with the ENT nurse prior to my surgery to discuss ostomy placement. I cried and cried during this visit, I couldn’t even look at the appliances and all she kept saying was ‘you are so tiny, where can we place this on your little belly?’ She was trying to be nice but I was so devastated and then she mentioned irrigation. I had no idea of what this was, I am a nurse and have never heard of such a thing. What is this? Will it get rid of the bag? When can I do it? How long after surgery?? I was excited that there was an option out there, finally, something, some hope…….up until this moment I have had no choices and everything that this cancer had done was so devastating and it never got better, at least not until today………

“I will never be able to sit again”…….that was my first thought after surgery. How can this possibly be done to a human being. My butt was sewed shut. She told me she was removing the rectum but I didn’t know my butt would literally be sewn shut. Are you kidding me? When does it end? When will this be over? Did she think because I was a nurse that I knew this? Because I didn’t. Right then and there I knew that patients were never properly educated, we assume they know certain things and patients are afraid to ask questions…..I am living proof. I never asked, mostly because I wasn’t aware I needed to ask……..I will never be the same again.

I cannot lay on my back, I cannot sit on my bed, I can barely walk and I definitely cannot take a shower alone and now I have this huge bag hanging from my belly that I find completely repulsive. Surgeons, residents, nurses, everyone wants to see it and I can barely look at it. How am I going to live the rest of my life with this ‘thing’ on my belly? My clothes are never going to fit right and everyone is going to know I have this……I must stink from it, I know I do. Why has cancer done this? It never ends.

Five days later and I’m ready to go home. I still cannot sit on my butt but I can walk okay and with the pain meds I can do most things. I need to start moving around, doing things, getting better. I was to have a home health nurse visit me, I would be fine. I need to start taking care of this ostomy on my own and I had a personal goal to find the smallest, lowest profile bags that I can find. The post operative ones were not going to cut it for me for very long. My home health nurse had no idea of how to help me with this appliance problem, she simply had not the training or expertise I needed right now and I was frustrated. I was also feeling sicker and sicker over the course of a few days. She assured me I was fine, the incision looked fine that I was still in ‘recovery’ mode. No, I knew something was wrong, I started to have huge amounts of drainage from the wound so I called my surgeon and she instructed me to immediately come back. This was a 3 hour ride. My sister in law came to take me back to Ann Arbor, I laid in her backseat a very sick girl. I just wanted to die. Is this ever going to end? Am I ever going to be normal again? Is this what cancer does? Take you little by little until you just give up?

Abscess. Rectal Abscess. Okay, what? Why? I was very very ill but with a common result of these types of surgeries. Especially in an area that received large amounts of radiation. The tissue is mush.

I went home with a drain in place for about 5 weeks. Finally after what seemed like eternity it healed and I could start my second round of chemo. I had a 6 month course yet to do before my treatment was officially done. I started that in October of 2007 and finished in Febuary of 2008. The second round was every other week for 3 days in a row. In contrast to the first regimen this regimen made me gain about 30 lbs of weight so I was ‘bloated’ as I like to call it. It was a combo of two different drugs and the goal was to destroy the smallest cell that may be floating around……good, kick it’s ass!!

Fast forward to today. I am 8 months post chemo as I write this bio. I am running a 5k next month for charity. I am irrigating my ostomy now and loving it. I can wear a tiny patch on my stoma and wear all my tight clothing and nobody knows. I have more energy than I have had in years and am happily dating and doing all the things that a single, sexy chick should be doing!! My newest goal is to wear a bikini again once I get my muscle tone back! It was a long hard road, one that I don’t care to walk again but along with it came many new lessons. I learned how much strength one can actually muster when you have to. I learned who my real friends were and how much people really do care and how they will rally around when someone is in need. I learned that a person can adapt to many situations and you do it without thinking, just as a natural reflex…..human beings are really amazing creatures and we don’t know what we have, who we are until we are really challenged and I think something like this, a real crisis brought out the best in me!! But I think the biggest lesson I learned was to listen to my body, when it’s calling for help I need to take care of it, this is all I get and I need to make it last until I’m good and ready to let it go!!

Cancer is not a death sentence but it is an order to fight, fight for your life, do not give up without the biggest fight. It’s also a lesson to everyone around you of how precious every day is and what a gift it is….it wasn’t my time and I knew it……I look at every single day as a gift and I will until my time is up, I cherish the little things, the smells, the sunshine and the rain, it’s all amazing to me now and I will never wish away another minute, another hour or another day. What a great feeling to be ALIVE!!


Meaghan said...

YOU ARE AMAZING! It was hard for me to read your story because it reminded me so much of mine! I'm so happy we met. Cancer takes so much away but it creates bonds that cannot be broken. I feel a bond with you and from this day forward you will always be in my thoughts!


AngiDe- Nana's Box said...

Wow. What a touching, crazy, sad, inspiring story. I can't imagine what it would have been like to go through something like that. You are a true fighter! Thank you for sharing your story!


P.S. I live in Ann Arbor! GO BLUE!

Joni said...

Deena, your story moved me. It's amazing how little patients are told about what will happen. And most of these things are issues one would never even consider!

I admire your courage to not only fight the beast, but to up and ready to run a marathon!! Amazing!

Avery Tales said...

What a shocking, yet amazing story! Thank you for sharing! You are such a fighter! You will be in my thoughts and prayers.

Rene said...

Thank you so much for sharing your story!! My hubby has leukemia and our local oncologist never tells us anything but luckily we have the doc at the transplant center who is great and gives us all the details. It is amazing that in this day and age that patients aren't as informed as they should be. I didn't even realize how much we were not being told until we met with the transplant team.

Gaspegirl said...

What an amazing story of strength and determination. I was reading your story and you took me back to my Grand Dad... he had the same cancer and was sewn up in the same fashion without any notice... why don't they tell the patients that??!! I am so happy to hear how your story ended... God bless you!

Shelly said...

I just want to hug you! What courage and strength you have. Thank you, truly, for sharing your story. Blessing to one amazing woman!

Allyson@House of Stephens said...

Meaghan - Thank you for sharing your story! What an inspiration! A 5k - you go girl!!! You are truly amazing.


Meaghan said...

Actually this is not my story its Deena. She is pretty amazing isn't she! Im so honored that she let me post her story here :)