“My Voice” by Dianne Tufo

Dianne Tufo - 'Survivor'

As I waited from 8:30 am for two doctors’ offices to call me back, I had four boys to contend with as I do any day of the week. I had to explain, “Not today, we’re waiting for Daddy’s doctors to call us back..so why don’t we go outside and play in the kiddy pool”, with the phone next to me as I continued to watch Mike. The first phone call back was from his primary. Ongoing ear infection, we needed to see an ENT and they gave me a number and a name and I made that appt. That was 1:30 p.m. Still waiting for the Oncologist. 3 p.m. received that phone call explaining again the problem with Mike’s eyes. They, nor myself, knew if this was a side effect from the trial maintenance study pill Mike was taking. He has seen an eye doctor before down in Philly; they wanted me to call and get mike into their office to check him out. So I called and they told me I needed to get him in by 4 p.m. Ok, it’s 3:15 on a Monday…Philadelphia is 30 minutes away. It was the quickest time ever getting six people in the car and with little traffic, Mike got there at 3:59.

That is a day when we “jump and go” in our house. I am Dianne, my husband is Mike #29 on Voices of Survivors, the creator of the song on the homepage…. Me and our boys are Co-Survivors.

I go back to that dark moment when I was driving Mike home from work. He told me he got a call from the Vascular Surgeon and he had a tumor in his leg. I realized there is no right time or place to tell a spouse, child or parent you have cancer, that your life truly will never be the same and it will change a million times over. That is what happened to me. To say I went into a whirlwind is mild. MRI, Surgeon, CT Scan, Oncologist, Port Placement, start Chemo. Also, in-between all that, our twins, Marsilio and Brendan, were celebrating their third Birthday, our Joseph was in kindergarten and our Vincent was starting his Special Pre-K school to help him with his needs. He has Mild Autism Spectrum. Yes! Cancer and Autism in the same house! I went into super mode: schedules, sitters, dinners, schools, play dates, doctor visits and also being taught home nurse care. I had to make sure all bills had both our names on them because even though I paid the bills, I had to make sure, in case I needed to speak to someone they would allow me access to the account. I had to make the change in our bedroom, to make it a makeshift hospital room. Supplies were coming in daily the week before chemo. I started to follow my set up instructions, but I remembered when my sister was diagnosed how we set things up, things I thought I would never have to do again and I knew she was watching over me… she wouldn’t let me fall.

Telling the family, friends, co-worker was next. I read all the information and tried to stay away from the Internet…that was a bit depressing. I used the material given to explain Synovial Sarcoma and that it was a “RARE” cancer. Oh I learned about having a “rare cancer”, all right. They all had the same questions and I did my best to explain Mike’s leg tumor in his right upper quad muscle. The most asked question was, “how do you get cancer in your leg?” Till this day, the answer hasn’t changed: “Mike did!” When Mike started chemo, I of course got my first lesson in taking care of him at home. I learned how to hang a fluid bag, how to get the bubbles out of a line, how to set the pump and when it beeped how to restart it, how to access a port and flush it out, how to give nausea meds through the port if needed, how to de-access a port at the end of  the night, give a shot of neulasta at the end of a long week. I learned how to take blood pressure, pulse and sugar blood levels. If I could stand the sight of blood I just might have made a good nurse. LAUGHING…. I always made the best of that time with Mike. I saw on his face how he didn’t want me to be doing this, but we are a team.. and we would get through this together. The “OUR” time became that time even if he slept through it.

I used my time to make the schedule up for sitters that we had come over to help out when they could. There were times we brought the kids into the Oncologist office, which was important for them to see where Daddy got his “Special Medicine” (that is what we called it). Chemo to a child..well they wouldn’t understand. The Cancer Center not only took care of Mike they looked forward to seeing our four boys and they took care of them too. That would be a “park/picnic” day or “sitting by the water/picnic” day. I always tried to make the best of it. I know the kids are young at the ages they were; six,five,three and three they understood Daddy not being able to run, play, catch or even stay up and horse around before bed.

Your wondering did I fall apart? Yes.. a moment here, a moment there. I couldn’t have the kids see me crying and I didn’t want Mike to hear me crying. I had the first breakdown in the beginning. I did the: “how, why, can we get through this, life isn’t fair”. The next breakdown was harder. After Mike’s last chemo treatment, that night he got a fever. I gave him Tylenol and I monitored him. I called the Home Care Nurse Agency and they said: “Call the Oncologist”. I knew then we were going into the ER, so I packed a bag, got my guardian angel, Valerie, over to the house and off we went. He was septic, there was an infection, they were going to pump him up with antibiotics and he needed to be in ICU ISOLATION..a “room within his room” type. There was the start of the breakdown. How to handle the kids and the family when all I wanted was to be near Mike hold his hand and truly for  the first time not to have to make any phone calls or just make one and someone else do the rest for me. But I did it for Mike. I was surrounded but felt so alone. The kids were upset but the sitters kept them going. He looked so pale I took a deep gasp of air before going into the room. Game face on, I pulled the extra pillow, held his hand and while he slept I wept into the pillow. I couldn’t lose him, this is the love of my life, we have gone through so much all ready and we survived it, we made a beautiful family together. This can’t happen! When the Doctor came in, he let us know a transfusion was going to take place. I knew that would help. He had had one before. It did work… thank God. Truly that was the low point for me thus far.

I learned going through this you lose friends and gain friends. The ones that I gained and have remained…I LOVE YOU ALL! You never let me fall. Thank You. Then the ones you lose, you do mourn. Some people just don’t know what to say or how to act over a long period of time. It happens. I try and make sure that no matter what is on my plate, I am here for them for whatever is going on in their life. Everyone has something and I have two great ears and shoulders to lean on when needed.

My story, my words are mine. I am nothing incredible. I do what I do for my family. You make sacrifices every day and you learn from them. I am one of many Co-Survivors out there. We are still battling the lung mets through the blind study Trial Maintenance Pill. It’s not remission or cancer free, but there is NO NEW GROWTH and I know that is good. I hold onto the day that I hear “remission” and “cancer free”. I have to… and I know it will happen.

To me a Co-Survivor is either a husband, a wife, a mother, a father, a sister, a brother, a daughter, a son or a friend who is the “Voice Advocate” for the Survivor when they get quiet or too weak, when no one realizes the depth of the disease, that you take on the job and start bringing “awareness”. You’re the one who comforts the family, holds hands, does the driving, becomes the gopher, nurse, disciplinarian and sometimes whipping post. To see Mike wake up every morning, to hear the boys argue over the same toy, whose turn is it to pick the movie or splash in the pool keeps me going every single day in this journey. I continue to bring awareness to “Sarcoma”.  It is my purpose…my calling. I am Dianne, the wife of “THE MIKE”, mom to Joey, Vinny, Marsi and Brennie, and I am…. a Co-Survivor!