Today is a very special "Mother's Day" guest blog by my dear friend and fellow caregiver in the ALK+ lung cancer world, Leslie Trahan. She's also an incredible mother of three darling children. I can think of no better way to spend "Mother's Day" than by honoring her and Andy's story. They have both helped us out so much and, at times, I literally feel as though she has carried me through this experience. She understands. She's willing to talk and text at 3am when everyone else has gone to bed. She lifts my spirits and together we provide each other encouragement and comfort. I am so thankful for Leslie. In addition, Andy just received great news on Friday that his latest treatment is working tremendously well and "melting the cancer away." Wonderful and well deserved news for this family! Leslie is also an advocate for lc research and funding. Please take the time to read this excerpt of a speech she recently gave in Washington at the Lung Cancer Alliance.
A little about myself: 36, wife, mother, daughter, sister, friend, SLP by trade. Work with children PreK-6. Stay busy, kids sports, church activities, household, help daddy, help siblings kids.
So here is my story as a caregiver......
My role as a caregiver began with the birth of our first child 8 years ago. What a joy it is to raise a child...to choose that role as a caregiver!!! Andy and I could not get enough of that role. Countless hours were spent feeding, bathing, dressing, changing, rocking, bouncing, singing, and so forth. We did anything it took to make that sweet angel comfortable and happy. Today, We have 3 of these beautiful miracles from God and will move mountains for them. They are our life and our joy!
My role as a caregiver shifted in February 2009 when I suddenly lost my mom and best friend to a massive heart attack. Soon after that tragic night, I found myself taking care of my daddy who had no idea how to live alone while trying to help my baby sister cope with the loss. Andy was my rock, my stronghold, my shoulder to cry on. Some days he had to carry me through. There were days I wasn't sure I would make it, but Andy was always there to keep me going. It was the toughest thing I had ever endured. Little did I know that my future would hold so many more tough moments.
In November 2012, my role as a caregiver would morph once again. Andy began to have severe leg pain making it almost impossible for him to stand. After 3 months of doctor's appointments, 10 days in the hospital and a lymphadenopathy, we finally got an answer...but it wasn't the answer we wanted...It's stage IV non-small cell adenocarcinoma of the lung. It was a relief to find out that Andy tested positive for the ALK mutation, but the hard core facts remained. Survival rates are devastating. The cancer is inoperable and incurable. Andy will have this disease for the rest of his life. What? Come again? No way! Not Andy! What are we going to do?
I immediately went into fight mode and put on my strong exterior armor. I did everything in my power to lift Andy up and convince him that he WOULD BEAT THIS! I just got things done, but on the inside I was crumbling! I cried every single time I was alone...in my car, at work, in the shower...every time. My life had been completely turned upside down. Responsibilities that were once Andy's became mine doubling my load. Having a sick husband also brought extra duties such as keeping all of his medications straight, making and attending doctor's appointments and scans, and collecting medical records...just to name a few. I worried excessively about him (and still do most of the time), and I have spent many nights watching his chest rise and fall. One of the hardest things to accept was the way it was changing our relationship. Some days it was almost as if I had four children and no husband. I longed for the man I married...my best friend...for that relationship to be normal again. I thought so many times... how can I/we do this? Who was going to hold me up and give me strength when I was weak? My mom was gone, and I couldn't ask Andy to hold me up. I had to be strong and be there to carry him. I began to search for strength anywhere I could find it.
I would now like to share with you where I have and continue to find strength. Hopefully at least some of you will relate. I first found strength through prayer, hope, and my faith in God. About two weeks after Andy's diagnosis I broke down (I was by myself of course). I was lost and didn't know what to do so I turned to my Bible, opening it to a random page and verse. What I read was Isaiah 26:4 "Trust in the Lord forever, for the Lord your God is an Eternal Rock." It brought me much strength and comfort that night and for many more days and nights to come as it would be a reoccurring theme throughout this journey.
I also find strength in my mom's famous last words of wisdom and lessons she taught me. She may not physically be on this earth anymore, but she is always with me. I can feel her presence. The lessons she taught me live on, and it gives me great joy to share some of them with you all today. In my opinion my mother was very wise and fair, but also a realist. She would defend her children at all cost, but when one of us was wrong she was the first to reprimand and set us straight. One lesson she taught me growing up is that no one ever said life was going to be fair. It is what it is. You can lie down and become a victim or you can persevere and make the best of every situation. She would often say, "put your big girl panties on and do what you have to do". It was never in a rude or non-sympathetic way...just matter of fact, and I always knew it was driven by love for me. Another lesson she taught me was "attitude is everything"! Those words were printed in bold black letters on a white sheet of paper on our refrigerator. I couldn't ignore it if I wanted to, unless I was willing to starve. lol!
Now I am a believer in the power of a positive attitude. We try to remain as positive as possible in our house. We maintain the attitude that we can beat this!!!
The last lesson I would like to share with you is one that my mother said the most often during our time together. Any time I was ever struggling with anything, my mom always reminded me that God has a plan for me. I may not like it or understand it, but one day I will. This has proven to be true in my life to this point. All of my life experiences have molded who I am and taught me very important lessons. These life lessons/words of wisdom from my mom often provide such a great source of strength for me.
Next up...our kids! We live for those little critters! They are our life, our joy! There are no words to express how much we love them. We will do ANYTHING for them. Andy and I strive to make life as normal as possible for them. The last thing we want is for them to look back on their childhood, and the only thing they remember is their daddy had cancer. We will not let that happen. They give us the strength to fight when we don't think we can stand another minute of stress! Their sweet hugs, kisses, and I love yous....
That brings me to our amazing communities...yes that was a plural! We have been blessed with so many wonderful communities of people. My family...blood relatives and in-laws, my work community, my church community, my friends, my cancer community. My siblings and in-laws have been such an essential part of this journey. They have listened to me complain and cry, kept my children during hospital visits and travel, cleaned my house, cooked meals, etc. My father-in-law is a "master" researcher. He has spent countless hours keeping us in the know on the latest research. That has taken a huge burden off of our shoulders. My brother, who is a physician assistant has offered medical advice and translated medical terminology...even in the middle of the night when we couldn't sleep. My baby sister that I mentioned earlier would do ANYTHING for me...and I mean anything! My co-workers and bosses have bent over backwards to work with me and make things as easy as possible. I have the most amazing 3 best friends of 20+ years who are on call 24/7. I know there is nothing I would ask of them that would be too great for them to do. My church community has provided child care, financial support, meals, prayers, and so much more. Our cancer community is da bomb! The "cancer club" is not one you want to be a part of, but what an amazing group of people they are. They offer so much support in a way that no one else can. After all, they know what you are going through and can relate to how you feel. I am sure many of you know what I am talking about. Andy and I have also been able to help others in the cancer community by offering various methods of support. We love to reach out to those who are newly diagnosed and offer to answer questions, give advice, or just listen. We have made some great friendships by doing this! It is such a rewarding experience and it reminds us of how strong we can be. Wow, our awesome communities...it's all so overwhelming...in a good way.
Finally, I find strength in one of the strongest people I have ever known. I respect him to an infinite power. He is a loving and devoted father and husband. Cancer will not and cannot take his spirit or his will to live. He is the love of my life and soul mate. I cannot imagine life without him. I'm sure you have figured out by now that he is the one and only ANDY TRAHAN, MY HUSBAND! I have learned over the last two years that I can lean on him and share my feelings with him...the raw, scary feelings. We have always had a very open line of communication. I chose to stop that initially for fear of bringing him down, but soon realized that that was just hurting us both and our relationship with each other. We now find strength in each other, lifting each other up in times of weakness.
Do I wish I could close my eyes, tap my ruby red slippers, return to a time when Andy didn't have cancer? Well, of course! Who wouldn't? But, I, like my mother am a realist. That is not going to happen so I will keep the faith and remain hopeful that Andy will beat this! Through modern medicine and the power of our mighty God, I believe it is possible. I hope you all believe the same. We have good days and bad days, but these are the cards we have been dealt. We will make the best hand possible with them and find the silver lining in all of this. We will do our part to raise awareness and funding for lung cancer in hopes of finding a CURE!
So a little update on Andy. It's 26 months post diagnosis, and he is doing well. He was fortunate to get 22 good months out of his first chemo pill called Xalkori. He has also completed WBR and some radiation to his spine. He also completed 6 rounds of IV chemo (Alimta and Carboplatin) and one round of maintenance Alimta this past February before begining his current chemo pill called Alectinib. This pill will hopefully help protect his central nervous system a little better. For now, he feels great, and for that we are grateful! We have been very fortunate to have two of the best doctors in this business taking care of Andy...Dr. Ross Camidge in Colorado and, as of this past March, Dr. Alice Shaw in Boston. We also have an amazing local oncologist who takes great care of Andy. These 3 docs make an Ace team!
Andy & Leslie
Andy, Leslie, and their beautiful children!
Andy & Leslie in Boston as he entered the Alectinib clinical trial and met with Dr. Shaw.
Andy and Leslie on Capital Hill, meeting with politicians to raise LC awareness.
Leslie with her baby sister, Catherine, and their beautiful mother.
The Trahan Family - including Karen and Phil (or Big Daddy as we have come to call him - he is amazing when it comes to research and helping me game plan!)
In closing, my hope for each of you is that you will NEVER give up! Believe that you can and will beat this terrible disease. Find the silver lining and try to have a positive attitude. It matters and it helps!!! Let's work together because together we can make a difference!