Today is a Gift

My life will never be the same. My days may be filled with errands and kids but my thoughts always drift back to cancer. Quesions swirl in my head. Will I get to watch my kids graduate High School? Please GOD, I want to raise my babies into adulthood, please. Will I get to be at their college graduations, their weddings, hold my grandbabies one day? If I am one of the lucky ones and I am fortunate enough to live, I pledge that no day will ever be wasted. I know that each day I am here, I have a mission to make a difference. Sometimes its to make my children smile. Other times, its to help a stranger. The other day, a woman approached me in Panera to discuss chemo, because she saw that I have no hair. We talked for awhile and she has stage 4 lung cancer. She knows her cancer has spread, but they want to do chemo to slow it down and she is having some hesitation. I hope I helped her in some small way. Every day, we can make a difference. If you are reading this, imagine receiving a diagnosis that changes your life. No matter how many scans that I have that are clear, each scan will give me anxiety because I'll know that its always a possibility that this cancer can come back and spread. Each clean scan will bring a smile, but each day will still be a blessing. Until I'm in my 80's, I will feel this way, and even then, each day will still count. I thought that I was pretty grateful for living before, but now, I am super grateful. I am grateful for my cup of coffee in the morning, I'm grateful that my taste buds are coming back, I'm grateful for my friends and family, grateful for the support of strangers, and of course incredibly grateful to have my kids. Every day, I'm filled with gratitude, and if I can remind folks that living is truly a gift, more people might value what they have, instead of focusing on what they don't have. I am grateful for this journey and every day is a gift.

Hardest Hike

Once I was diagnosed with Synovial Sarcoma this past June, I began the hardest trail of my life. The trail began with multiple doctor appointments including a PET scan, which scans your entire body for tumors. I had to sort through medical information about this rare cancer and then I had to prepare for chemo. How do you really prepare for chemo? I prepared by getting myself emotionally ready and then I also made sure to eat well and get plenty of sleep. I also had my Power Port surgery, the day before chemo started. The port is inserted during a minor day surgery. I felt pretty sick afterwords, because the anesthesia tripped a migraine.

I went into round one rested for sure. Then the hike began when round one started. Round one consisted of 6 days in the hospital, being hooked up to IV chemo drip 24 hours a day. They call the chemo regimen AIM for short. The AIM cocktail is tough and by day 3, I was affected with a host of side effects, even though they do their best to administer drugs to counter side effects. Who knows, maybe some of the symptoms I was feeling were side effects from the side effects drugs. The drugs they gave me automatically to counter side effects were anti-nausea drugs (several types), steroids, laxatives, stool softeners, and Mensa. I also had my migraines tripped during chemo round one, so I added my migraine meds to the mix. Then, they gave me Ativan to help counter the effects of the steroids. That didn't work. While Ativan did make me drowsy, It also made me hallucinate. I marked that drug off of my list as a drug of choice. They also gave me other things, I just couldn't keep track. I ended round one feeling pretty crappy, and went home to rest up. I call my port "Diana," in honor of Wonder Woman. I'm trying to approach this with the strength of Wonder Woman, with grace and determination.

Once I got home from round one, it was pretty apparent that I was sleep deprived. The first thing I had to do was catch up on my sleep. The hospital is not the place to get rest. I was woken up at all hours in the night and they continued to monitor my urine output as well as take urine samples every 4 hours. I had a tough time drinking coffee, because my esophagi was burned. I would experience pressure in my chest and an amped up feeling, then extreme weakness and fatigue. I was too weak to drive during those first two weeks post chemo one. At around day 5 after chemo one, I began to get the chills and then a fever. Within 24 hours, I couldn't keep anything down and I had a fever of 102. To make matters worse, I also had a terrible migraine. By 2pm, I called 911 and was taken to my local hospital by ambulance. I was treated for a possible infection and it took two full days until they could stop the nausea. They couldn't stop the migraines, so I had 24/7 migraines for the 6 days I was in the hospital. They gave me migraine medicine, but the medicine would only last a few hours. Then they'd have to give me other pain meds to attempt pain management. It wasn't successful. I was mostly in pain during my 6 day stay. My white blood count was at a low at .1 when I was admitted to the hospital, so my immune system was vulnerable. I was at my Nadir on admission (when white blood count is at its lowest), and they believe I had Neutropenic fever. This can be very dangerous, and it was a good thing I had gone to the hospital when I did.

Then it was time to recover and rest after the second hospitalization. The doctor gave me 2 weeks until round two of chemo, so that I could rest up. This reprieve was the nicest time. I finally could get my strength back, catch up on sleep and feel semi normal. After about a week catching up on needed sleep, I did start to have normal hours, when I could feel like myself again. It was nice for my kids to see me have some normal moments. I went to the beach with a friend and we sat in beach chairs after having a nice lunch, and it was one of the most normal days that I had during that time period. I watched my nutrition and spent time with my kids, then I was as ready as I could be for round two.

Round two started August 29th. I was more prepared this time and I knew whet to expect. The hardest thing is being in the hospital for 6 days. This time, I discovered an outdoor patio, which I could access with my IV roller. I requested benadryl to sleep instead of the hard core drugs they gave me last time which helped a lot. My dad stayed with me this time, which helped. It gets very boring the hospital, real quick. The effects of chemo were the same as last time, fatigue, chemo brain (confusion), chest pressure, and difficulty sleeping.

After round two, I also knew what to expect. Catching up on sleep is always paramount after being in the hospital. I ended up with really bad nausea again and wasn't keeping anything down. Fortunately this time the doctor prescribed a stronger anti-nausea drug, a suppository. Hey, desperate times, call for desperate measures! I also had a low grade fever, but I kept an eye on it. My energy was low and I had difficulty sleeping, but Benedryl would work in a pinch. My taste buds have been effected since the start of chemo, and most foods just don't taste right. After round two of chemo, I couldn't taste sugars, but I could taste salts. Its the strangest thing, to look at a piece of chocolate cake, know what it will taste like, and the take a bite and it taste nothing like it should. Its the biggest let down. I've been able to avoid a repeat hospitalization, but I've had symptoms come and go.

Now the emotional factor. How has all of this affected me and my family? Its been very tough. I think chemotherapy is archaic. I feel like there has to be better treatment for cancer, yet many of us are stuck with chemo and radiation. These solutions cause harm, lots of it, yet of course they can also help increase my odds for survival. The hard part is that chemo and all of the drugs given to help counter the side effects cause harm to healthy cells. The emotional part is that chemotherapy can be traumatic. I honestly felt traumatized after and during each round of chemo. My kids hated having me gone for 6 days (for each hospitalization). I was in the hospital for 18 days over the past 6 weeks. My kids have struggled emotionally, which is understandable. We started attending groups at Cancer Support Community, and we'll start some family counseling. I hope that anyone who goes through this understands the emotional impact. I was never asked during any of my hospitalizations, if I needed someone to talk to, yet I was asked if I wanted any type of drug and given a craft if I was feeling bored or creative.

I hope that writing about my experiences can assist someone else going through it. My advice: advocate for yourself! Have a family member call doctors offices, get records, book appointments etc. My older sister Christine has been a terrific advocate. Also, Inform yourself! Educate yourself about the treatment, the drugs and pull your medical records, because things have often been documented incorrectly. Get support! Join a cancer support group, join Facebook groups with similar diagnosis, seek a therapist and talk or write about how you are feeling. My daughter writes songs about her feelings, I blog and talk with friends. Always get support!

My hardest hike is far from over. I meet with my oncologist this week to discuss a third round of chemo. I also have a PET scan this month and then the below the knee amputation to discuss and schedule once chemo is done. This trail is difficult and rocky, and I don't know what to expect, except that I know I have the strength to persevere. Nothing is impossible, when you have hope as your fuel.

#SynovialSarcoma #cancerfight #cancersurvivor