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
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
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ReplyDeletePraise God!!! Way to go Kate.
ReplyDelete