Living is an Art

I was reflecting about my past 15 months. I've had many highs and many lows since being diagnosed with a very rare cancer called Synovial Sarcoma. Overall, it has been an amazing ride. I am so much closer to many friends and family. I feel as if cancer brought some old friends back into my life and made the friendships deeper and more heartfelt. I became closer with some aquaintances and now we are dear friends. I've had deep conversations with strangers and deeper conversations with people I've known a long time. In fact, I've honestly had the best conversations over the past 15 months. I have grown stronger as a mother, friend, sister, daughter and woman. I lost my hair but not my sense of humor. I lost my leg and found more stability within myself. I learned how to walk again and I appreciate every step I take. I realized that there is such a thing as "chemo fog," since I am now out of the fog and feeling more alive than ever. I have bonded with fellow cancer warriors and found solice and strength in their midst. Some cancer warriors lost their battle this past year but they are always with us in spirit and they will never be forgotten. I now truly understand the saying, "live every day as if it's your last." I am now enjoying life instead of just surviving. I hope that my journey helps inspire some of you to take a deep breath and enjoy time spent with loved ones. In an instant, life can change on a dime, so never cling to anything and be ready to experience whatever life may throw at you. We are offered no guarantees and there really is no such thing as security. The only security we have is within us and when life throws you a zinger, you find out really quickly, where your blind spots and misperceptions lie. My life turning upside down may have been the biggest blessing in disguise. I know God was with me through it all. What if we all looked at life's ups and downs as equally amazing experiences? Just a thought. I may have argued my own point in the middle of chemo, while throwing up and feeling the sickest I've ever felt or being at death’s door after my white blood count dropped to nothing....yet I learned amazing things from those experiences. I had taken so many things for granted prior to that. Just living.....every taste, hug, conversation, laughter and tears are all pretty amazing. I must say though, dark chocolate is still the best medicine. Oh, and who knew losing my hair would help me discover that you can be beautiful and feminine without hair and that short hair is actually a lot of fun. 

I'm very excited about living. I wake up so curious and hopeful because every day is an opportunity to experience something new, or to see things from a different perspective. 

#sarcomawarrior #synovialsarcoma #cancerwarrior #amputeelife

A Bad Fall

Well, I had heard it would happen, and it did....I took a bad fall directly on my limb. In my Facebook group for amputees, people talk about it a lot. They would warn, "Be careful, whatever you do, don't fall!" People would say that the pain you experience when you fall is the absolute worst pain you will ever feel, and that it goes right through you and you will almost want to die because the pain is so bad. Needless to say, I was worried about falling. Yet, I was pretty comfortable getting around on my scooter and walker and I was pretty sure I could grab onto something if I was falling. Like tripping on a crack in the sidewalk, you don't always see it coming. On Friday night, I was simply leaving an event and using my scooter. I was exiting the building and using the handicap ramp. Apparently, there was a big lip between the concrete path and the blacktop. I didn't see it coming. I was rolling along fine, talking with my daughter Taylor as she was a bit ahead opening the back of the Jeep, so that she could put my scooter in once I got around the car. It happened in a split second, I was rolling along and then my scooter hit the lip in the concrete and my scooter went from under me and there I was, standing on one leg, and panic went through me. You know that feeling, a moment of disorientation and fear, and you cannot think clearly. I knew I was off balance, so in that quick second, my brain screamed....."Put your right foot down to keep from falling!!!" And that was it, I fell directly on my residual limb and down onto the pavement.

I'm not a wimp when it comes to pain, so trust me when I say that the sheer pain I felt when I fell, was like nothing I've ever experienced. I screamed so loudly for what seemed like eternity, as I lay there on the black top. People came running, and Taylor sat by my side comforting me. An ambulance was called as I was laying there, praying that pain meds would be injected into me as soon as possible. I was disoriented, shivering, overwhelmed, and wanted to pass out. Passing out would have been the best thing that could have happened, but no, I stayed very much aware of the non stop, intense pain I was experiencing. I was writhing in pain and wanting to cry but tears wouldn't come, since I was in shock too. People had me take deep breaths and I tried, oh but I tried. I'm sure that my blood pressure was through the roof. The ambulance and fire truck arrived and I was surrounded by men asking me questions. I just wanted pain medicine...."Please GOD, I need pain medicine fast!" Then I was on route to Los Robles hospital, and it seemed like the longest ride ever. They don't give pain medicine in the ambulance so I was counting the seconds until we arrived at the hospital.

I did start crying, weeping actually as we pulled into the hospital. Tears started rolling and wouldn't stop until about 10-15 minutes later, when the morphine was injected into my port. All along, Taylor was a rock. She stayed calm after I fell. She held my hand, she talked to me and in my disorientation...I could hear her voice comforting me. She rode in the ambulance with me and was by my side when they finally injected me with morphine and she recognized her mom again. I'm sure she watched the pain drain from my contorted face as they injected the pain medicine. At that moment, the crisis subsided and I could hold her hand back and rub her sweet face and tell her everything is going to be okay. That's when her tears came, and suddenly she could let herself weep. She had been so scared and she had never seen me like this before. Well, I had never experienced anything of this magnitude before. I've been in labor, had three c-sections, had an amputation, and the pain of those experiences don't hold a candle to the pain I felt from falling on my limb.

Once Taylor and I had a good cry together, we could talk about the experience. Also, at that point, I could muster up the strength to take off my compression socks that were covering my limb. The moment I rolled the last sock off, blood came gushing out. I guess my incision opened up on my limb when I fell. Thank God I had morphine in me, otherwise seeing the blood would have freaked me out. Thanks to pain medicine, I felt chill about it. However, the dose of morphine had brought unmanageable, out of this stratosphere pain down to about a 7 on a scale of 1-10. So I asked for more! They glued my incision and put steri-strips and bandaged me up. They also gave me another dose of morphine. Whew!!

Then it was time to go, as they were discharging me. They got us a wheelchair and Taylor rolled me out to the car. From the simple movement of getting in and out of the wheelchair, my pain skyrocketed back up to 10+. By the time we were in the car, I was shivering again and having a difficult time speaking. We went on the hunt for a late night pharmacy to fill the script for pain medicine. We stopped at one pharmacy that was still open but they were out of hydrocodone. In fact, as my sister called around to other pharmacies, they were all out of this pain medicine. Wow, really!? Luckily they gave me two tablets to try to get through the night, so I had some pain medicine. I was worried though, because I was feeling overwhelmed by the pain and I wasn't sure I would get through the night with only two pills. We called the hospital and almost went back but the staff there wasn't very helpful so we went home. We grabbed Taco Bell, which helped actually and as long as I didn't move at all, the pain would start to abate.

I have been in bed since I got home late Friday night. I only get out of bed to go to the restroom. This is hands down, the most helpless I've felt in 9 months, since this cancer journey started. The pain in my limb is still through the roof if I move at all, even with strong pain meds. I also feel vulnerable. In that moment that I was standing in the parking lot and panic went through me, I suddenly felt like an amputee. I do try to feel like Wonder Woman most of the time, but even Wonder Woman has vulnerabilities. We all do. I felt human, and the pain taught me that I have to protect my limb at all costs. The fall has shaken my confidence. I know that I will have to push through that. I feel a bit scared to use the scooter again (although I can't for awhile anyway because my limb is too tender and sore). I was so close to having my first fitting with my prosthetic and now that will have to be pushed back for maybe weeks. My limb is so, incredibly swollen. It will take awhile for the swelling to subside.

I have time to think and reflect about why this happened. I know this is a wake up call to slow down a bit, and it has forced me to stay in bed. I always try to find a higher purpose to things, so I'm working hard to find the lesson in this. I can feel my limb...I mean really feel where my limb ends. I'm having no phantom pain or limb sensations like I did after the amputation. The pain is so intense but I feel it exactly where the pain is. Somehow the trauma to my limb has sent the message to my brain that my body ends in my calf area. That part is interesting.

I will see my surgeon tomorrow and I will cancel my appointment to see my prosthetist. I'm so bummed that I will not get to try on my new prosthesis for my first fitting. I bet my limb is more swollen now than after my amputation. I feels like it anyway. At my last appointment with my prosthetist, he told me, "Do not fall between now and our next appointment!" See, that jinxed it, LOL. So now, I heal, I rest, and I heal. I cannot do anything else at this point. I'm also bed bound, and on bed rest. The kids and my sister Christine are taking good care of me.

Prayers for speedy healing and recovery (and reduced pain) would be appreciated! Thank you everyone!

Denise

#synovialsarcoma #cancergirl #cancerawareness

The Effect of Love

Someone asked me recently, "How are you changed by loving others?" Great question and it didn't take me long to reply. I am forever changed by the people I love in more ways than I can count. One year ago, I would have said that I am changed by the people I love for different reasons however. We always have the opportunity to grow, develop more empathy and to understand sacrifice, when we love others. Last June, when I was diagnosed with synovial sarcoma, I was shown directly how my love for others would help me grow in ways I never imagined. 

I was advised by my medical team, to have a right leg, below the knee amputation. I knew that I could go against their medical advice, so I poured over research, spoke with my children and close family, and ultimately made the decision to have the amputation. I love my children more than anything, so much so, that I knew that I needed to have this surgery, more for them than for me. When you love others, you know that sometimes you need to sacrifice. I knew that my best chance for long term survival was to amputate, and I want to be around to watch my children graduate high school, and to watch them grow into adults. I also knew that if I didn’t have the surgery, they would worry and so, the decision to amputate became easier.

So here I am, a cancer survivor (thriving) and an amputee. I am in two distinct clubs now, one for cancer and one for amputees and it is an interesting journey filled with love, tears, hugs, kindness, fear, joy and hope. I had the amputation surgery seven weeks ago today (Wow, time flies!). My love for my children and family has been the light that guides my way. My love for them allowed me the opportunity to not just live for  myself, but to live, thrive, and hopefully inspire others along the way. My love for them kept me going on tough days and was the only thing I was thinking about as I was being hooked up to chemo, and being rolled into the operating room. We often think it is other people loving us that gives us strength, but our love for others gives us courage we never thought possible. I also had to find courage and grace to allow some family and friends to distance themselves from me, as they were in too much pain with what I was going through. I am stronger today because I am forever changed by the people I love.

How have you been changed by the people you love?