It's the middle of the night, and I just woke up worrying about a friend who is a rock for everyone else, is so selfless, and is going through a very difficult time, and it hit me. I am so blessed to have been the lifeline, the caregiver to three of the most precious people in my life. I was given this chance, this opportunity, this gift from God, to be the one who made the difference in their lives, and in two cases, in their return home. This wasn't a burden, this was a blessing, and I think I can say I did well. I guess after going through cancer with my mom, husband and now my partner, Charlie, I have become somewhat of a 'pro' at dealing with effects of chemo, radiation, falling hair, diarrhea, constipation, throwing up, neuropathy, cramps, loss of appetite, tube feedings, wound cleanings, crying, laughing, kissing, hugging, holding, and saying goodbye...wait, did I miss anything?
I would be lying if I told you the hardest thing we caregivers have to do is sit and watch every day, knowing there is no cure, and all we can do is be there. But be there we are. Every night, every day, every pain, every cramp, every bathroom trip, every time trying to get them to eat; it is so damn hard to have to live for you and them. Trying to give them the will every second of every day sometimes is overwhelming; but I know that Mom and Chuck knew, and Charlie knows I am there, easing the pains, and aches, and being there to love and hold him, and they remember every minute I am making a difference. And yes, sometimes the communication is difficult between us, sometimes he is sick of being sick, and doesn't want to be a burden, but I look at him and tell him he is not alone, we are in this for the long haul and I will fight alongside every step of the way.
There are two moments I can remember about my mom and Chuck that stand out like they happened yesterday: My mom had an aggressive small cell lung cancer that metastasized to her brain. I can remember a couple of days before my mom died, it was around 2 a.m. and me, my dad, sister and brothers were in the room, quietly arguing about her and what she may need, and at that point we all thought, including the hospice nurse, that she was in a coma. All of a sudden we heard, "I'M FINE," just as loud as can be. So we looked at each other and said, "Oh, OK then." I guess she wanted to sleep. Those turned out to be the last words she spoke. I was holding her hand when she passed.
In 2005, my husband of 27 years, Chuck, was diagnosed with an aggressive recurrence of his throat cancer from 2000, in the form of squamous cell cancer, which had attacked first his lung, brain and skin, then by the time he passed, was all through his body. I remember one day, driving him to the hospital for radiation, and I still cry to this day about it, I asked Chuck how he was feeling. He looked at me with such love, smiled, and said, “I am dying.” Wow, what do you say? I looked back at him, smiled back, touched his hand, and trying to be the big strong caregiver, I said, “We will fight till the end together then.” I could have pulled the car over and cried for hours. I physically hurt inside. But boy did he fight for us; he went through the pain and side effects of radiation and chemo again, for us; he wanted to be there for us. In hindsight, there was no beating it this time. Not knowing this then, I really wish he could have just lived out his final days without the side effects. He wouldn't have been here long, but it would have been a better stay. I know he is with me always; he is my guardian angel watching over me like I watched over him.
Charlie was diagnosed in 2004, and was Chuck's friend. He was still going through his initial chemo and radiation when Chuck was going through his treatments. He would come and sit with Chuck and wheel him down to radiation or for blood work. He was there for me when Chuck died, and I so love him for that. I needed to pay it forward. When he found out in 2008 that his cancer had metastasized to his lungs, we knew we had a fight on our hands. It has since metastasized two more times in his lungs and after three operations and losing half of both lungs, so far, his scans have been clean. Amen. It’s funny, I have written Charlie’s story about his eight-year fight with colon cancer many times, so for me to talk about my journey as a caregiver is something I find hard to do. Then I realized Charlie's dream is my dream too; I want to be the difference between a life, and a life that survives and thrives.
Charlie had a dream after his last diagnosis of traveling Rt. 66 in his '50 Dodge, with his childhood friends from Chicago to Santa Monica, advocating in every town he stopped in about early colon cancer screening, and that it saves lives, and talking with other patients and their caregivers, listening to their story, for everyone has a story. He is going to live that dream if I have anything to do with it. I have told him we will make this happen, we will get that group, that company, that person who would sponsor such a journey of hope and advocacy. I am not giving up.
Charlie’s son created a website for Charlie to tell his story: www.coloncancerwarrior.com. This has given him purpose and drive. I have seen Charlie not only survive, but thrive. His purpose in life is now to make sure that everyone gets screened, and if diagnosed with this damn disease, that they get the care they deserve. He is a warrior for the cause. Wild dream? No, it will be reality. This is my purpose in life too. I want to eradicate this dreaded disease. God knows, I have had enough cancer in my life. I want everyone to be aware of their bodies, learn their bodies and their symptoms, and if there is something not right, go get checked, for themselves, and for their families so they will continue to know the joy of living.
I have met so many wonderful people within the Colon Cancer Alliance, and I so wish I had met them in 2008 when Charlie was diagnosed with mets to his lungs. Boy, I had no one to turn to. No one wanted to talk about colon cancer. I was so overjoyed to have found such a loving, caring, helpful, group when I found this site. There are so many dedicated people here whose life work is helping people cope, and fighting to end this disease. And I am proud, so very proud, to call myself a part of you all here.
I am so blessed to be given the opportunity to be a Buddy volunteer. When I was first approached, I thought, “I have no real education in social care.” But then I realized, duh, I have been a caregiver for most of my adult life. Education, schmeducation! I have life experience. I only pray I can touch the life of someone going through a difficult time and help them get through and let them know they are not alone.
I love having the opportunity to raise awareness on Dress in Blue Day in March, too. The last two years we have had the Mayor of Orange County declare the first Friday in March as Dress in Blue Day. She lost her grandmother to colon cancer and loves the opportunity to help us raise awareness. Charlie and I ran (really walked) the Undy 5000 in Tampa last year, and were blessed to meet so many others fighting for the cause. We have set up booths at two American Cancer Society Relays for Life this past year, and handed out many brochures about the Colon Cancer Alliance and how we can work for you. Any chance we have to spread the word and the work that the Colon Cancer Alliance does, we take.
I love my church, I love life, I love Charlie, I love being given the opportunity to help others understand what it is they are up against, and wow, did I mention how much I adore my kids and grand kids? Life is good. Yes life is good. We are not only surviving, but we are thriving, and my prayers are said every day, that all my friends here will survive and thrive, too.