Thursday, July 13, 2017

The Journey I Never Knew Would Be Mine

Anyone who is reading this knows back in March of this year I was diagnosed with a rare form of Cancer in my ankle called myoepithelial carcinoma. There are about 400 cases of this type of tumor ever in the world. What makes mine even more rare is people with this particular type of tumor usually get it in their salivary glands... Mine was in my ankle. After finding out my diagnosis, I immediately got an appointment at MD Anderson and started this journey. I thought that first day at MDA was the hardest of my life. 12 hours of appointments, MR Is, CT scans, Chest X-rays, and Ultra Sounds. A couple weeks later I began my journey through radiation. I went for treatments 5 days a week for 5 weeks. At first I thought, this isn't so bad, but as time went on, I would see that it was bad. My foot was incredibly burned, swollen, my original incision would become gross and painful. The more time went on, the more I started to think about what was really happening to me. Once radiation was complete they told me they needed some time to let my skin heal before they would need to go back into another surgery to make sure there is no cancer remaining.

They told me that surgery would be fairly simple. My oncologist would go in to check for remaining cancer and once that is clear, plastics will finish up with a skin graft, 10 days in the hospital and then I would begin my recovery. Little did I know, That this journey would not be anything like they expected it to be.

On Thursday, June 22nd at 5:30 am, I walked into the MDA surgery center to begin what I thought would be the final portion of this journey. At 7:30 am, I kissed my Mom and Yiayia before going back into surgery. They told my family the surgery would be about 6-8 hours... 11 hours later, I was finally in recovery. They took me up to my room where I thought I was beginning my recovery. Once in my room, My mom informed me that they found cancer cells on the tendons that bends my toes. Because of this they had to remove the tendon completely. Lucky for me, My amazing plastic surgeon was able to rebuild the tendon so I would have the ability to bend my toes. They took from my left forearm to use on my foot and then a thin layer of skin from my thigh to close my arm. Things were looking good at this point.

Friday seemed to be going just fine, until the Dr. came in to check my flap and realized that It was failing. At 4:00 pm on Friday June 23rd, I was rushed into an emergency surgery to try and fix the vein before the flap completely failed. This second surgery was 6 hours longs. When I woke up, there was a surprise waiting for me. My spiritual Father, had flown down from Tulsa to come see me. Seeing him was exactly what I needed in that moment. I couldn't understand why this was happening to me and he told me he didn't know why either but he wished he could. I needed that honesty in that moment. He has been there for me for most of my life and to have him there at that time even if it was only for a little while, it made me stop thinking of the bad things that were happening and helped me focus on the good.

Saturday My Dr. came in to inform me that I may have some sort of clotting disorder. He had never seen someones vein in the leg clot the way mine was. He could tell that my flap was still not draining as it should and trying to avoid another surgery, he decided on Leech therapy. When they first mentioned it, I started to laugh. I've seen this on TV shows but never realized this was a real form of therapy. So starting Saturday morning, I began my leech therapy. Thank goodness for the epidural, because if I had been able to feel those little blood suckers, I would not have been okay. :)
They also had put me on a heparin drip to help with the clotting. We continued this therapy every 4 hours for a couple of days. Everything seemed to be going as planned.

On Monday they realized that the leeches did help but not enough to keep it alive. The morning of June 26, they informed me my flap had completely failed and they would be taking me back into surgery. Because I had already had two surgeries so quickly, they decided to wait until Wednesday to do the third surgery. Since the flap had failed, they decided to let me get up and sit in a regular chair in the room... well after being in bed, on my back with no movement for 5 days my body didn't like that I was moving so much. I got very ill, hot,out of breath and eventually passed out in the arms of two nurses and was put on oxygen. By the time I was back in bed, I swore I was never getting back up. :) All I could do these next couple of days was wait... and to me, that was the hardest part. It made me think more about everything. Why was this happening? Why wont my body work the way its supposed to work. By Tuesday evening, they were giving me blood transfusions to get me prepared for surgery the next day.

Wednesday June 28th, I went in for my third and final surgery. This time they removed muscle from my left thigh and connected it to everything possible in my foot to make sure it takes and stays alive. Because I have such small veins and I'm a hard stick, they had to make a small incision in my right arm and go down to place the arterial line.  7 1/2 hours later, I was back in recovery. Usually you are in recovery about an hour before being taken back to your room, however they couldn't get my heart rate down to an appropriate rate.Finally they were able to take me back up to my room so I could get some rest.  Thursday ended up being the worst day I had while in the hospital. By this point I had 3 surgeries in 6 days, countless complications plus conjunctivitis and the one thing that brought me down was a migraine. I was miserable, I couldn't stand any light or noises. It was the worst feeling ever. By Friday I was back to my some what normal self. I finally felt like I was on the path to recovery. But then Sunday took a different turn. I woke up from a nap with a stiff neck, sore throat, headache and high fever. They immediately got me a chest X-ray, took blood and took a urine sample. Everything came back negative except the chest X-ray. They said I had something called Atelectasis, which is a partially collapsed lung. In that moment, I remember thinking, You have got to be kidding me! Why cant I catch a freaking break.

Skip ahead a few days, I was told on July 4th I would be able to sit up and dangle my leg. My Dr. Came in on the 3rd and surprised me by letting me start a day early. It was the first time in days that I truly had a smile on my face. The morning of July 4th my physical therapist came in and said its time to dangle, while I was sitting there she pulled out the walker and said lets see how your balance is. So not only did I get to dangle my foot but I was allowed to stand up and take a few hops to my right. I'm still not allowed to put any weight on my left foot but I'm getting a lot of strength going in my right leg and arms. The next day they had me walk out into the hallway area where I walked about 90 steps. To some people that may not seem like a lot, but for me that was a long ways... At those 90 steps however, my body decided it was too much. I got sick and dizzy just like I had that first time I had gotten up. I was very disappointed in myself. I knew I could do it so why did I only make it 90 steps... well I wasn't thinking about the fact that I have been flat on my back for days. My body needs time to get back into shape! I was determined to continue on the next couple days and get to the point where I could do it without getting sick or dizzy.

Friday July 7th, my Doctors all came in super early for rounds and gave me the best news any one could hear. They told me I was going home! At first I thought it was a dream... could this be real? After 16 days in the hospital I was really going home? That was the longest day of my life, being discharged from a hospital is not a quick thing. While I was waiting my PT came for one last hop around... This time I made it all the way around the circle hallway. I made it! I said I could do it and I did! I had a smile that went from ear to ear! I knew I could make it home. My mother, yiayia and I stayed at the MDA Rotary hotel for the next couple of days to stay close to the hospital just in case. Then Sunday July 9th, I finally got to go home to my own apartment. Recovery is so different when you are in your own home. That first afternoon, I took the best nap I think I've ever taken! My yiayia cooked me home cooked meals and my mom has been my nurse and made sure my medications are taken on time and everything I need is done. I truly would not be able to get through this without them. 

I'm in the recovery portion of this journey and each day I think back on everything and still cant understand why this happened. Right now I don't know why and I may never understand why this happened but I do know that it needed to happen. God doesn't throw you curve balls unless you need them. God doesn't send you on journey's unless he knows you can make it through. God has been with me every step of the way, and even when I felt upset with him, he still protected me. I would be lying if I didn't say that through all this I doubted my faith. I was upset that this was happening to me. I asked God why a million times, but I know there is a reason behind this. I'm so very thankful for my faith. Prayers and support of all my friends and family are what got me and are getting me through this. I would not be where I am today without each and everyone of those people who have been there for me. I will never be able to repay everyone for the kind words, prayers, support, gifts, hugs, kisses and love they have shown me. I will continue to push forward and get through this recovery and show everyone I did it. I beat Cancer. I look forward to what comes next. :) 

"I can do all things through Christ who strengthens me" Philippines 4:13

Sunday, June 4, 2017

What Comes Next

I've had a lot of people ask what comes next in my journey. Instead of writing a million different messages, I figured why not another blog post. 

May 12th I finished my final day of radiation. It was one of the most exciting days that I had in a long time.  After my treatment was over I got to ring the bell. For those of you that dont know, when you finish treatments you get to ring a bell to represent the end of radiation. It was the first time in a long time, I felt there was a light at the end of the tunnel... 

5 weeks of radiation had nothing on the next few weeks. Even though I was finished with the treatments, they said my skin would be getting worse before it would get better. Boy were they right. I couldn't wear shoes other then house slippers, I had to use a cane for a bit because it hurt to walk, my skin was getting darker and gross every day. That light I thought I saw at the end of the tunnel started to get further away again. 

A few weeks after radiation ended I had my first appointment with my plastic surgeon. I always thought if I was going to need a plastic surgeon, it would be for a nose job, not reconstructive surgery for my foot. I guess that nose job is going to have to wait! 😀

So now what comes next. This surgery wont be a simple one. Since meeting my doctor, I've spent hours processing what comes next. The surgery is to go back into my foot, clear the remaining cancer and then finish up with a skin transplant. Because they want to make sure there is good blood flow to my foot after surgery they will take the skin and blood vessels from my left forearm and attach them to my foot. Then to close my arm, they will take skin from my stomach or groin. Because this surgery is pretty intense, they will be keeping me in the hospital for 5-7 days. The first few days, I feel are going to be the worst. I wont be able to get out of bed, move my foot, dangle it... I will be stuck with no place to go. After a few days they will start the process of allowing me to dangle my foot off the side of the bed. If all this goes well and there are no issues with blood flow, I will be released to go home. 

But thats not the end of it. It will be weeks before I will be up and walking on that foot. Lucky me, more days spent on crutches. I think about all this and sometimes I just want to burst into tears.  I'm no rookie when it comes to surgeries, however no recovery for those surgeries, comes close to what this will be like. The thought of being hauled up in bed for that long makes me crazy... good thing I like watching movies! 

As time gets closer to the surgery, the light that I saw a while back, is starting to get brighter again. There really is an end to all this. Part of me wishes this journey had never begun. But the other part of me is glad it did. A few months ago, everything was different. I look back and realize how strong I have been, how I was able to get through this difficult time, how I kept putting one foot in front of the other, even though I felt broken at times. I've realized that a few months can do a lot to a person. It can show you the person you want to be. One who wants to live in the now, rather then in the past. One who knows who her real friends are. One who is willing to take the road less traveled and be different. 

A few weeks, months, even years from now, I'll look back on this time and be able to say, remember when I had that crazy thing called Cancer? I still dont know why God chose this life for me, but I will always be grateful for the life I have. I have an amazing family who has bent over backwards for me, friends who have given countless hours out of their schedules to be with me for appointments, or lunches. Even strangers who see me in the store, or at lunch and tell me they will pray for a good outcome. It may feel as though my life sucks at times, but deep down I know I have the best life God could have given me. 

This is just a speed bump in the road. I am choosing to take the road less traveled, and in the end, it will make all the difference.  


Saturday, April 29, 2017

My Journey

This post is about the interesting journey God has taken me on. Back in 2015, I began to have the most excruciating pain in my left foot. Usually it would happen at night when I laid down but sometimes it would continue throughout the day. After weeks of this pain, I went into my Dr. where he took an X-ray and basically told me I was crazy. He said there was nothing in the scan to show that anything was wrong. He put me on some medicine to help with the pain and sent me on my way.

Fast forward a year, in July of 2016 I was offered the Youth Director Position at St. Basil the Great Greek Orthodox Church in Houston TX. As hard as it was to move away from family, I knew this was what God wanted me to do. Mid August, I moved to Houston. That is when I realized not only was I still having pain in my left foot but a lump had begin to grow on my ankle. The lump grew to a pretty big size. I had many people look at it and they all said it seemed to  be a cyst. Everything I had read about cysts, didn't make me too concerned or in a hurry to get it checked out. Boy was that a mistake.

In January 2017, once my insurance kicked in, I finally decided to go to the Dr. to get the lump checked out. By this point, it hurt all the time and I couldn't wear any shoes other then sandals. Again my Dr. said he thought it was a cyst and referred me to a podiatrist. The next month I met with the new Dr. She took an X-ray said it was a cyst and scheduled me for surgery. On Friday February 24th 2017, I went in to have the mass removed from my ankle. The mass was almost 8 cm long. A week later when I went to get my boot she told me that it wasn't a cyst and she was waiting to hear back from pathology on what exactly it was.

On March 9th, I went back to have my stitches removed and that is when my whole world flipped upside down. I could tell something was off from the moment I walked into the room. The Dr. was quiet, distant and looked like she wanted to cry. She sat down next to me and told me the original pathology report stated it was a sarcoma. She informed me that they had sent it to MD Anderson for a second opinion and that was all I heard. I left the office in tears. I immediately called my mom and told her what the Dr. told me. I was in shock, I couldn't believe what she had told me. There was no way this was correct, it had to be a mistake.

A few days later we got a call from the Dr. with the final diagnosis. They labeled it a Myoepithelial Carcinoma. This is a rare form of cancer usually found in the salivary glands... mine was located in my ankle. At that point, I knew it was real.  The first few days of knowing were a blur. I didn't know what to think. I found myself staring off at nothing, wondering how this happened. I would begin to tear up just thinking about it.  My mom came to stay with me and some of my family came down to surprise me.

That was exactly what I needed in that moment. My whole world was crashing down on me. I was a month shy of 28 years old and I had cancer. I knew that I needed to get the best care and I was in the best city for that.

 I called MD Anderson and got an appointment in the sarcoma center. The first day was exhausting. 12 hours at the medical center for blood work, CT scans, MRI's, Ultrasounds and to meet my oncologist. A couple days later, I got a call from the nurse telling me my scans showed nothing had spread. For the first time in weeks, I felt relief, but I knew it wasn't the end. On April 3rd I went in to meet with the Radiation oncologist. He informed me, I would have to go in 5 days a week for 5 weeks and receive radiation on my foot. After that was over, I would have a few weeks rest period and then another extensive surgery to clean out the remaining stuff in my foot.

On April 10th, I began my radiation journey. The first week was a breeze, but as time has gone on, I've noticed a difference in me. I'm getting more tired, my foot is red, swollen, dry skin and I have marks up and down my leg. I just finished my third week of radiation. I am more then half way done with this part of the journey. Two more weeks and I will be done with radiation! I can't believe it has gone by so quickly!

I think about all of this and wonder why me? Why is this happening to me? Was there something I could have done to prevent this? Why didn't I get it looked at sooner? Why didn't I ask my first Dr. to do more scans? Through all this, I have had a lot of mixed emotions. Mad because this has happened, happy because I'm lucky I didn't have to do chemo, sad because cancer sucks.  I will never really know why, but I do know that God has a plan. He has a plan for all of us. I do know that God wouldn't have sent me on this journey if he knew I couldn't survive it. A few years from now I'll look back and remember this time and be able to say I did it. I made it through that difficult time. I beat cancer.

This chapter in my life is definitely one I'll never forget. I would never have been able to get through this without the love and support from my friends and family near and far. I'll never be able to repay those who have taken so much time out of their busy schedules to take me to my appointments or help me keep my mind off everything that is going on. To all those who have sent me get well cards and gifts. All the calls, texts and messages. I truly am so very lucky to have each and every one of you in my life.