They all exist in everyday. There isn't a day that goes by when I'm not in pain whether it be pain from the melanoma or joint pain from the BRAF and fatigue YES is definitely a part of this combination. This causes so much frustration sometimes I want to explode. So, thankful Z has a stable place for school so I can take care of myself, but days that means I rest to try and keep going and keep happy the rest of the day. I get down on myself feeling like I'm not accomplishing anything, but the truth of the matte is I'm exhausted. I'm not sure what I would do without my mom...she helps keep up with house stuff and Jeff takes on more with the night routines and I'm so thankful. I'm working through not feeling guilty. I wish I didn't need so much help and wasn't so needy.
My normal stress relief is exercise or a bubble bath and that too needs to be redefined as well as just walking can irritate my back and hip, I need to be extra careful in the sun on this medication sun sensitivity and burning really easily is real, and well I'm still nursing my incision and bubble baths are not allowed still. I'm not writing this to be complaining, I'm writing this to report a reality. I'm really having to work hard on the reality that yes, these are road blocks, but I do have a CHOICE. I can decide how to redefine how I get the same joy and that is where the work begins. I can't change what I have, I can change how I react to it and not fight the fact that I am going to need to find new normals. On the outside, I look 100% normal other than the girl that seems to wear comfy clothes and sweat suits most of the time....lol
With a 3 year old, there really isn't a choice other than to find your center and GO! Zachary is definitely my strength and what pushes me to appear and be SUPER HUMAN. I'm not, I just incredibly motivated to not let this BASTARD BEAT ME! It won't, but somedays it does and that is because somedays I realize I need to let myself feel so I can fight again. The piece that has been a challenge as of late has been the LONGEVITY of this fight. It hit me the other day, that there really isn't an end to this treatment. I have to find that space that doesn't look back and is thankful I have this as a choice, but BRAF isn't easy either and it feels like a lifetime of sacrifices. It feels good to write this in the event I can help someone else that realizes the chemo no matter what it is you are on is HARD but there are CHOICES, support groups and help out there too.
I fight because I want Z to know and realize and learn without words that things sometimes are not fair, things sometimes really suck, but it doesn't have to be the end of the world. Kids this age learn BEST without words. I want his character to show that I care enough about his character to not expect something from him that his mommy isn't willing to do herself. I never want to preach to him, but teach values without words and through our action. Much more powerful. I want him to wake up one day and have an "ahhh haa" moment and say, I always knew mom had Cancer, but I really had no idea how much she was hurting because she always found that space to be silly, make sure she found a smile, and I never felt like she never was available. We don't give up and there is always a space in the UGLY that can be found that is BEAUTIFUL. You have to accept the UGLY to find the BEAUTIFUL.
It is in this desire that I had an "ahh haa" moment the other day that needs to push that desire a step further. I want my husband to feel the same way. I realized this the other day...As much as I have him for support, I need help in learning how to be there for him too. I'm not shy to report that we have started going to counseling and yesterday was our first session. How cool is that, that I have a husband/partner and he has a wife that LOVE one another enough to learn how to REFILL our own personal cups so we can learn this NEW NORMAL together and GROW together. Everything we thought we knew is DIFFERENT...everything has changed and we need to learn to change and grow with it instead of fight what used to be or how we used to handle things. This is NOW. It's tough and there has been some parallel moments in our family just due to the pure exhaustion it takes dealing with Cancer and then Z and not to mention all of the grieving I have felt handling the loss of pregnancies and the finality of never carrying a child again. It's a lot on a relationship and a family. You know what though....Honesty really does help in the healing process. It works!
The pain not something I want to keep talking about because I feel like such a "Debbie Downer" but it's ALWAYS there as a reminder to make everyday a blessing. I feel like it's important for people to realize that many of us have "circumstances in our lives that aren't fair or seem like too much" but what has helped me is being RAW, HONEST, AND AUTHENTIC about it. I'm not hiding that Cancer SUCKS...it does. That is where I get my motivation because I am learning to allow myself to feel so I can get angry enough to fight, move on, and exist in a space that is healthy. As much as it may appear that I'm holding it together, there are times when I'm not and that is a truth that I feel very strongly about reporting. The people that see that the most are my mom and Jeff. I don't have my normal "get up and go" but when facing the world, put my best foot forward. I look a lot different and on the outside than I feel on the inside.
I do see myself as a fighter and a strong woman, but it's very important to me to report the human side of Cancer, the fact that I am in fact human and I do have days in which I wish I can take it all away and stop the bus and shut down. I have so many more limitations than I did and I have allow frustration to creep in because as I start to figure out how to navigate my world on "chemo/BRAF for LIFE" the need to establish a "NEW NORMAL" has been so necessary.
I see the fatigue and effect it has on my immediate caregivers and there are times when I cry so much for what feels to be the burden I have put on our family. Everyone calls me AMAZING, inspiring, MOTIVATING, and and and and yes I do know this about myself but I'm also not anymore AMAZING than any of YOU. The very essence of being HUMAN is AMAZING and I strive everyday to see the cards that are dealt and BE the BEST ME that is possible, but that doesn't always happen.
All my medicine causes me to be moody and feel like an alien and has an effect on Jeff and my mom the most. I carry a guilt for this, but the counselor did help me realize that guilt is something I should feel if I said say "I was an honest person and then lied deliberately in front of someone's face." Cancer isn't something I chose or anyone chose and she reminded me that guilt isn't allowed. I am not doing this to the family, it just is what it is....Important for me to hear. Medication isn't something that is my go to, but I'm open to it when necessary. I cried the whole hour and got many things out in yesterday's session and am willing to try a new drug to hopefully help with quality of life and the anxiety's that go into the worry of the future and things that are out of my control. I start tom. and will report how it goes. It's called LEXAPRO. We'll see!
http://www.lexapro.com/
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000214/
Love to everyone...Have some exciting days ahead. My cousin Christi will be visiting Halloween Weekend and growing up we spent every summer and every other Turkey Day and X-mas together in Santa Cruz...It's been over a decade since we have seen one another and I'm so excited to give her a hug and have her meet Z. Jeff's Dad "GRANDE" will also be visiting as he heads home from a business trip. This is a challenge in and of itself as he has his hands full with Claudia fighting her own fight right now and under going chemo so we understand the challenge to "get away". Cancer isn't a one man's job. We are fighting together. Love you to Claudia...Keep it real, keep it going! Family is everything and it means so much for them to make a trip down as everyone has so much going on and we aren't always the easiest to visit because sometimes we just want to keep things simple.
Another fun thing we have on our plate is we are FINALLY taking a family photo! I'm very much looking forward to this as it is incredibly important to me. Pray my rash stays in check...We are doing it the weekend of Nov. 5th and couldn't be more excited! We know we are loved not just from our visitors, but from all our family and friends EVERYWHERE. WE are grateful to have the courage to share this journey with you so openly and honestly. That is a gift.
LOVE YOU ALL!
Jen - That is the way. You are awesome and you ARE doing it. IT is an EVERY day thing and I love that you MAKE the choice to go at it strong, confident, authentic and full force. The only possible way I could ever imagine for that girl I met in the hallway 14 years ago. Keep it strong and keep it real. I love you Bunny!
ReplyDeleteJen Jen Jen! Your blog is speaking to me so strongly today, let me tell you! Seriously, you NEED to talk to my mother and let me tell you why: don't know if you remember that at 30 years old, my mom went into heart failure. She was a married mother with a 3 year old and a newborn (me), living in St. Louis without any family support around her. Doctors gave her a year or two to live. Devastating, as you know. But, like you, mom kept on trucking. She was a nurse working the night shift and she did what she had to do to be a mother and a wife and a superstar. She put that death sentence in the back of her mind and pushed forward. 2 more heart failures episodes later and 19 years later, she received a heart transplant in 1996. She is 15 years on this new heart and doing very well.
ReplyDeleteShe experienced her new "normal" like you are. She would be able to tell you how to adjust to living with a condition that has no end...forever. She can relate to the guilty feelings over burdening the family. Let me tell you, being on the other side Jen, at the end of the day, it's not a burden. Your family LOVES you. They would do anything for you, and so did we. It's an honor and a privilege to have helped her when she was ill. To do the dishes when she is so tired, she can't see straight. To watch her be so physically weak and still attend our dance recitals, piano concerts, graduations. It has built my sister and my character up like no one else could. I've had sooooo many ah ha moments watching her all these years. Z will. Like me, he will realize that mom was there in the front row even when she was feeling the worst. This gift that you are giving him is the best gift he will ever receive. Believe me Jen, I've been there. Z is a lucky boy. Yeah, it sucks that you have to sacrifice your own body, emotions, psyche to show him this, but like you said, he can't learn this by reading about it. His future wife and future family are already lucky because of you. And if you EVER doubt that...Jen...I will be very upset with you!
My mom has also been on a rainbow of medications since 30 years old (she is 65 now), including the anti-anxiety and anti-depressants, even Lexapro now. So Jen, I really think you can benefit from talking to her and getting adjusted to your new normal. You have the same determination that she does and I can clearly see that you will live a long time. It is my belief that these diseases with their life expectancy time tables are all subjective. It is the person that determines how long they will live! If you are determined to live a long time, you will. I don't know how in the world my mom has survived this long, so I simply call her a miracle. She has beaten all the odds and she continues to wow her transplant doctors with her progress.
So, I can relate, to tell you the least. Reading this Jen, helps me to understand what my mom must have been feeling and thinking at that tender age of 30 when her life changed forever. Thank you, thank you for being so open and honest and sharing your feelings with us. I am still in awe at how you continue to impact all of us during this difficult time. If you are willing, I can give you her phone number.
by the way, this is Michelle (Poindexter).
ReplyDeleteMichelle put me onto your blog last summer when I was worried about sitting in the sun. She was in the shade, offered to switch with me and then told me your story. I can only offer you my prayers. You have so much work to do, but let me say that while we all know what melanoma means, my neighbor succumbed after 20 years, and she was late seeking treatment because she was embarrassed to reveal that she was an alcoholic.
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