I'm not exactly sure on where to begin but if you're reading this you are in some way a part of my life and I can't express how much I appreciate that or how much I love you. I'm not promising that you will enjoy the following but this is giving me the ability not to go crazy with cancer. So, here goes nothin'...
My fight started three years ago while I was working as a Full-Time Certified Nursing Assistant at Emmanuel Nursing Home. I was lifting a resident into bed and my right buttox was pulled. I felt a bump on my right, back hip and was taken to the Litchfield E.R. where I was treated for a hematoma(a pocket of blood, under the skin) and was put on light-weight duty for a couple of weeks. During these weeks I underwent many doctor visits and was told it was some type of tumor. Unfortunately I had to leave my wonderful job because I physically wasn't able to handle the work, any longer. I had lost 20 pounds and my back couldn't handle it because of the tumor. That was the hardest part of all...Finding out that everything that I worked so hard for and actually loved doing had to be let go. My co-workers and most of all, the residents were my life. They taught me so much about life, love, and of coarse, death. I grew into the person I am today, because of them and that is something that I will forever remember and have an endless gratitude for. So, life…Yep, its just not fair. I think everyone has accomplished to agree with that statement. But, what exact part in a person’s life isn’t fair? To each their own. I’m not asking for sympathy or attention. Nobody should say “Sorry”, because it’s no ones fault. I’m not ignoring or putting a mask over my new life, but I am not going to let it take over the life that I had before it. Please do remember, I am not dead and this is not the end of smiles.
I have cancer. Everyone at some point in their life have said, “That will never happen to me.”. I know I've said it many times when the ‘C‘ word was brought up, then I woke up one morning, answered the phone…And it happened. My life became more than unfair, it was questionable. Now, lets just get the facts straight just so that you understand. Cancer is a group of many related diseases. All forms of cancer involve out-of-control growth and spread of abnormal cells. These cells form to make tumors that come together, spread, and kill normal tissue. If the cells break from the tumors they spread to the bloodstream to different areas in the body to lymph nodes and form a group of tumors.
More than one million people get cancer each year. There are five major groups of cancer; such as Carcinoma, Leukemia, Lymphoma, Melanoma, and Sarcoma. Treatment depends on the type of cancer, the stage of it, your age, your health, etc. There are four major types of treatment, which are; surgery, radiation, chemotherapy, and biological therapies. Sarcomas are very rare, meaning it’s responsible for two-percent of all malignant tumors. Malignant also known as cancerous tumors that are connected to your body tissue are called “Sarcomas”. There are three groups of sarcomas; such as bone cancer, soft tissue sarcomas, and pediatric bone and soft tissue malignant tumors. They grow in bones, muscles, deep skin tissues, tendons, cartilage, blood vessels, and nerves.
My type of sarcoma rejects chemotherapy and only a small percentage will take radiation. There isn't much known or researched for sarcomas, but it usually occurs in young adult females. December 6th, 2007 was the morning that I woke up and answered the phone to a nurse that had the results of my biopsy test. The results that I had been waiting and praying for. My results were positive, the lump on my lower back was malignant. I went numb and into shock, only saying a few words to the lady and then, Goodbye. The tears began to flow and my knees buckled under me. Of coarse, the first thing that came out of my mouth was, “Why? Why me? Why now?”. There is no answer to that, but obviously God has a completely different plan for my life than what I had ever envisioned for myself.
I have been diagnosed with Alveolar Soft-Parts Sarcoma.
“There is a reason for everything.”. Those are the words I live by.
Four days after the big 'C' was bombed, my parents and I met with my orthopedic surgeon, Dr. Cheng. We asked questions, analyzed the answers, and went over what would happen before, during, and after surgery. I had no problem with going under the knife. It was the fact that it he estimated an enormous excision, an indent where the tumor existed, and the possibility of not being able to walk for a long period of time or if ever again, on my right leg. I went into complete denial of everything.
Friday, January 4th, 2008 I became a patient at University of Minnesota Fairview - Riverside Campus. At 2 P.M. I was injected with general anesthesia. Surgery took four hours and I was in recovery for two hours. I have little to no memory of the first 48 hours after surgery. The morning after, my physical therapist came into my room and it was time to take "My first step" with a walker. Hooked up to I.V.’s and heavily medicated for pain, I managed to walk. Walking was the most powerful, yet hardest challenge in my life, but I did it every time. She said walk and I asked how far. I could not bend my hip/torso more than 45 degrees and wasn’t able to put weight on my right leg for three weeks. I was in the hospital for five days (I was released Tuesday, January 8th, 2008). I went home being totally dependent on my parents, which was a breaking point on my pride. I felt like a burden, a 20 year old having barely any ability of doing things on her own. I missed being able to go out whenever I wanted and doing what I wanted, when I wanted. I missed the littlest things of being independent, you name it and I longed for it. A couple weeks after surgery I had a post-operation appointment.Dr. Cheng checked my excision and removed the JP-Drain that pumped the extra fluid out. He said that I had recovered remarkably and that I could walk with my own restrictions. A week later I was walking with only a limp and for the first time I saw the excision/scar, including the indent. It took time to adjust to the looks of it but I’m proud. Why should I be ashamed? I wasn't able to bend as far as I was able to before or run as fast and I couldn't lift heavy weights but it all took time to heal. I underwent six weeks of radiation for fifteen minutes, every day, Monday through Friday, at the University of Minnesota Medical Center, Fairview - University Campus. Radiation was site specific, which means that only the parts of the body that were being treated are affected. Side effects from my radiation were sore muscles, fatigue, and a 3rd degree burn to the right hip area. March 13th, 2008 was my graduation day from radiation. With help from my chiropractors, I gained full strength and ability back into my right leg.
Since then, every six months I receive a MRI of my torso to make sure there are no signs of tumors or re-occurrences of cancer in that area. So far so good, but the cancer spread to my lungs. Treatment was debated and surgery to remove my first nodule was decided. I was not happy with the in-decisions that my team of doctors at the U of M were giving me. They were never giving me enough information and were scattered with ideas of what my next treatment plan should be. I did receive lung surgery to remove a nodule on my right lung, that was too close to my bronchi tubes and heart while at the U of M on November 8th, 2008. After, I decided to make the big move to Mayo Clinic, in Rochester, MN. This was probably the best thing to ever happen to me. My new team of doctors have taken control and give me more options and knowledge than I ever imagined. Every three to four months I make the trip down for CT scans on my lungs and blood tests. The next day, I meet with my team and review the scans and results.
Unfortunately, I again had to undergo another lung surgery on my left lung on, August 16th, 2010 and again, back on my right lung , October 23rd, 2010. All of my lung surgeries have entitled removing a type of triangle 'wedge', only extracting the nodule that has grown big enough to be removed and some tissue surrounding it My October 2010 surgery was the hardest lung surgery for myself to accept and undergo because, I was furious that that the latest nodule had grown more and having to add more scars to my body just was not what I wanted to hear. So, again, my parents and I made the long trip down to Rochester, MN for my early morning re-op arrival time at the St. Mary's Hospital. Sadly, the O.R. nurses still remembered who I was and I still had the pre-op routine memorized. As the anesthesia was injected into my I.V.'s, the wires got hooked up to various parts of my body and the happy-gas mask was put over my face. I was told the usual, of "Count back from 100 and go to your happy place.". I honestly wanted to punch Cancer so hard! I fell into my deep sleep, pissed off, and in tears. Every time that I'm woken up in the recovery room, my first thoughts are, "Why does this nurse insist on saying my name so annoying and repetitively after I respond after the second time?", "Where are the ice chips?", (Which, I will beg for until I'm blue in the face, because they say they don't want me to get nauseous by having too many ice chips, but I could never have enough and don't get nauseous usually 'til the next day after.) and, "Where are my parents?". My mom stays with me throughout the night after a surgery and my dad comes and goes, because I'm woken up by nurses every two hours for pain medicine control, oxygen, and blood pressure rests, etc. The next day after surgery, I get x-rays done to check for air bubbles and to make sure the wedge that was taken out was a success. Well, of coarse of all times, I was hit with the news that I had an air pocket in my lung and it needed to be extracted or my lung could collapse. The next thing I knew, I was sitting up on the edge of my bed, arms resting in front of me on a table, being prepared for a long, thick needle to be put in the back of my lung, that would suck the air out into a mason-like jar. The area was numbed but I still felt the needle as I was told to breathe deeply in and out, and try to push out as much air as I could when I exhaled. The noise of the air from my lungs into the jar was weirdly delayed a second or two and made it hard to concentrate on anything but that needle wiggling around inside me, because it sounded like an old man breathing his last breath. Thankfully, after two more x-rays I was cleared to go home.
The rest of my recovery in the hospital for my right lung I had neck pains, which I thought was the culprit giving me headaches. I remember my parents driving me home, thinking we'd never make it because my head was pounding so hard. The headaches were hurting me more than the pain coming from my lung. For the next month I had migraines to the point where I wasn't able to eat, or get up in the mornings for my classes. I couldn't read or let alone do any of my homework. I saw my chiropractor basically everyday to attempt to ease the pain, but nothing was giving me relief. It was becoming such a problem that my mental abilities were being highly affected. I wasn't myself and everyone around me could tell something more was wrong. My chiropractor told me I could try acupuncture and did. Unfortunately, thanksgiving 2010 and the beginning of Holiday cheer was spent in the St. Cloud Emergency Room, and an ambulance. Thanksgiving eve night, was the worst of that the migraines had gotten and I went into the E.R. as soon as I was able to, Thanksgiving morning. I had a CT scan at the St. Cloud Hospital, which showed a mass on the right side of my brain. I was finally feeling relief in head from the painkillers so, my mind was just starting to comprehend what was really going on. I honestly felt like someone was joking with me. I kept starring at my parents and best friend, who had blank faces. And then, it all came surreal when my mom said, "It's time to call your sister This is serious, Tonya."(which I'll blog about later) Mid-noon, I was then taken by ambulance to my "home" at Mayo's St. Mary's Hospital and spent the rest of the evening in their E.R., reviewing my scans and having reflex, hand/eye coordination tests, because my left hand and foot had been showing signs of weakness/clumsiness since that past weekend. My scans showed a 2CM right frontal mass with surrounding edema(fluid swelling). My brain had roughly mid-line shifted, right to left. The doctors believe it was a metastasis(meaning to spread) from my previous soft tissue sarcoma. The tumor wasn't attached, but more like floating in the edema/swelling, giving reason that the cancer spread through my blood, being there is no other signs of cancer in my body, attached. There was no sign of hemorrhaging and my scans showed no signs of cancer in either of my lungs.-That was the official good news that I had been waiting to hear! I was admitted to the Neuroscience Intensive Care Unit for observation Thanksgiving night and most of of the next day. Friday, November 26th, 2010, was spent having another CT scan of my chest/lungs, abdominal and pelvic area and then a MRI of my head. The MRI involved getting 10 blue dots from my forehead to the top crown of my head, needing to shave dime spots of my hair, marking with a blue marker, and putting tape on it to preserve for a type of GPS for my brain. After, I was taken to another area at Mayo, the Charlton Building, where I was fitted for my radiation head-mask and reviewed my options of radiation with my team of radiologists. At one point, I had a team of 15 doctors, including my amazing brain surgeon, Dr. Fogelson.
Throughout this entire time my family and I were given an abundance of information each time a doctor stepped into the room. Everything was happening so fast that I honestly didn't feel like I was even present in the room, anymore. I felt like I was Alice, from Alice in Wonderland when she was falling down the rabbit hole and the whole World was collapsing on top of me. At this point, Dr. Fogelson had just went through the procedure of removing the tumor from my brain and also informed me with all his (much appreciated)honesty, that he had recently performed this same procedure on a previous patient, but that patient came out of surgery with one side of body, paralyzed. Good news was that that patient was well on his way to a successful recovery. So, there I was sitting up indian-style, on the hospital bed, surrounded by the loving eyes of my parents, sister, and best friend. I began to wail with tears as my dad held me. My mind was racing too fast for even myself to comprehend. I was feeling so many mixed emotions at once, I became numb. After everyone and myself gained their composure, the room went silent for a couple minutes. I remember looking up and saying,
"This is doable, I can do this.".
November 30th, at 12:45 PM I said my goodbyes to my sister, parents, and best friend also known as my 'Rocks and Stars' to go into surgery which began at 3:15 PM and lasted approx. four hours. My case that day was the talk of O.R. because of how difficult it was with the bleeding caused from the tumor being vascular and the location being so deep. I was admitted into the ICU and was monitored for brain hemorrhaging, through a drainage rube that was put in my brain for recovery and to keep my blood pressure lowered. The right side of the brain where my tumor was located, operates the left side of the body, which means if I had any paralysis, my left side would be effected and it was. I woke up in recovery to numerous doctors and/or nurses poking and bending my limbs, mostly on my left to make sure I could feel the sensations of touch. I couldn't. I don't remember much, besides that the first 12 hours of recovery was better than expected from my neurology team and that's all I cared about. As for the 24 hours after, I remember being very upset because of all of the heart and blood pressure monitoring, and the I.V. cords were limiting my mobility more than I already was. It took all of my attention and energy to move my left leg and arm to where I wanted it go. I felt paralyzed. Even with being on high dosages of pain medications, I wanted to continue with my daily activities like, just brushing my teeth and eating breakfast on my own. But, reality struck me and I couldn't, alone. I was outraged I that I didn't have sensation in the areas that were checked every two hours and that my movement wasn't improving as fast as I wanted. Dr. Fogelson and Dr. Miller(partners in my surgery) kept trying to assure me that the first couple of days would be the hardest and I needed to give myself time and physical therapy would help.
My response: NO!
You really know that your family loves you when you lash out for a completely uncalled, childish reason and they look directly at you and say,
"It was only a matter of time and that's understandable, kido."- My Auntie Coleen
I was determined to get my hair washed out from all of the blood and O.R. gunk, so my mom helped me use the dreaded shower cap(they do the job for the time being, but makes it a terrible mess to be able to brush your hair afterward. This just turned into me yelling at my innocent mom for brushing my hair the wrong way or pulling too hard(which it was snarly mess from the beginning, so there wasn't a way to avoid it)and probably "speaking" too loudly about how I hated all of the nurses(only because I needed them to lift me from my chair to bed and I couldn't on my own). I felt ashamed and overwhelmed with thoughts I couldn't process because my brain literally felt like it was a old CD skipping.
The next few days after 99% of my tumor was successfully removed, and I was put into a normal hospital room, I was seen numerous times by Occupational Therapy(mind) and Physical Therapy(body). Coming to the realization that this was going to take more time than I ever imagined and I had more hurdles to jump than I had expected, I had a few anxiety attacks but leveled out and eventually I put my game face on and my goal was HOME. One of the times that OT came to test me, I was given a 3-D box that I had to duplicate and was told to draw a clock, showing a specific time. I couldn't. Wow, that was a kick to the balls, if I had any. Then, I was given a small pillow to tie the ends of(like those fleece-tie blankets), for another OT/PT exercise for my left hand/fingers. Something a kindergartner can do, right? Well, that was an actual project for me to accomplish. My walking was improving with each time I got up...Which, wasn't something necessarily new, because I have gone through that 'type' of experience already on my right side. Nothing was stopping me there. But, the difficulties with my hand coordination and brain functions was a whole new situation for me to tend to for myself. I knew I could but my physical actions just weren't proving that correct. I felt defeated.
December 7th, 2010, I was discharged from the hospital to go home, again completely dependent on my parents. More than ever before.
Now, 23 years young.
