Diagnosed March 28th and weeks went by for confirmation and the phone call for markers and prognosis! That was a tough couple weeks not knowing but I had family and friends praying and standing tall with me.
I've only told a handful of friends that I consider my prayer warriors, my husband (who was with me at diagnosis), my children, my brothers and my father(with parkinsons and memory loss). I felt at the time that I had to be strong and only think of the positive and what life still had in store for me! My positivity and my outlook for living this life every day and finding the joy in each moment has helped my family immensely. It is helped them so much it is no longer an issue or topic of conversation. They ask, as in passing, how I am feeling and conversation moves on as if nothing has changed. My world has changed but life goes on!
However, let me take you into a glimpse of my world prior to diagnosis! I don't really know where that positivity came from. I am a great encourager to my family and friends but I am my own worse critic and have always allowed the negative talk in my head to overwhelm me. I have had a pity party in my head for the last few years since my girls graduated and moved on with their lives. I have been bored and felt alone! I work full time and also care for both my parents, one in a nursing home and one trying to live alone at home. My husband has never been a nurturing type of man and doesn't really know how to help when I am sick or injured and getting a Cancer diagnosis simply scared me hell out of me.
In the moment of diagnosis the only thoughts that went through my head was that I couldn't be sick as I am the one taking care of everyone. Who would take care of them? Who would love on my mom and dad in their last days? Who would be there for those late night talks when my girls needed their mom? How would my husband survive without his business partner, his wife, his mother of his children? Heck!, if this diagnosis turns out to be aggressive, Who will take care of me?
Then it dawned on me, I will!!!! I'm not sick! I feel good, I'm healthy, I'm strong, I'm the voice of reason, I'm the nurturer, and I am going to live each of everyday from here on out with purpose, intention and with reason! It was in that moment that it seemed all negativity and pity left my brain!!!!
I have never been afraid of change, of adventure, or of crossing bridges that I came upon!! This is a change that I never expected but it is a change that needs to be accepted! This is an adventure of finding my strength and my endurance which is even far greater than any mountain I have climbed or 1/2 marathon I have ran! I always have been excited when finding a bridge on a hike and excited to cross over to explore what lays beyond that bridge and CLL is now the bridge between the old me and the new me!!!!
The only one thinking about this diagnosis now is me and not talking about it ok for the time being because I know when I need my family and friends they will be there for me in a heartbeat! They all embraced me while waiting for the confirmation of diagnosis and when and if CLL progresses to the next stage they will be there for me!
The new me is the new me that acknowledges my world has changed but my life will go on day by day, year by year, and hopefully decade by decade!!!
Written by
My2kdsma
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Unfortunately for me, It took a year for it to settle down. I thought I was dying tomorrow. As a good friend and Doctor told me, "Don't be giving away your clothes just yet".
Thank you! No writing hasn't in the past come easy but I am finding writing my thoughts now is very useful!
My Hemotologist/onocologist is not a CLL Specialist but is a partner with Dr. Jeff Sharman. I found that out at my diagnosis and didn't think much of it til I started my research and found a list of CLL Specialist that this doctor recommended and when I got to my State and City and found the name "Me" listed for my city I then looked at who wrote the list and it was indeed Dr. Jeff Sharman!!! My nerves settled down almost immediately!!!
I am pleased to see that you have the support and love of your family, and the positive that you are not ill.
I hope that you make good use of the goodwill and experiences of the members of this site, there are no stupid questions, and no question will go unanswered. It is also a good place for a rant if needed ...
The emotion that follows diagnosis is known to us all here ... my stupid brain went into overdrive for a while ... but it will all calm down in its own time.
I was diagnosed in 2006 and as yet have not needed treatment.
Your last sentence is the perfect way to finish such a well written post ...
Mountain climbers are welcome ... when it comes to overcoming obstacles, who better to show us the ropes ... groan !
Your post is awesome and really helpful to me as I was diagnosed just a week ago. I have a peace about my CLL as my only symptom at the moment is occasional tiredness and my Haematologist has only put me on Watch and wait. I have been dealing with dementia for the last 15 years in my beloved aunt and now my mother which has left me traumatised and terrified of inheriting it myself. I have no wish to live into my 90 's as they did.
I am blessed with the support of my Faith and the close friends I choose to confide in.
I love your positivity and determination to be a new you, this is how I feel too.
It is Spring as I write this and it has never before looked this beautiful!l
You are so welcome! Yes I totally understand your fear of dementia also as my mom was diagnosed 10 years ago but I suspect it has been going on for sometime prior to her diagnosis but we just didn't understand her strange behaviors til the diagnosis. It has been a very long 10 years and the last 2 years my mom doesn't even know who I am. Dad's parkinsons has progressed quite rapidly the last 2 years due to the stress of mom and his memory is beginning to fail also due to parkinson's.
10 years ago I began my journey of staying healthy and taking care of myself so that I could properly care for my parents and my family. My daughter was diagnosed with Lupus at the age of 20, 5 years ago. We've had quite the roller coaster of emotions over the last few years and keeping myself healthy, strong, eating well, excercising, sleeping 8-9 hours a night and meditation has made a huge impact in my life. But to be honest the diagnosis has given me a new perspective. I've always taken care of everyone and put myself on the back burner at times. Now I know that in order to be there for everyone else I DO have to put my needs, health and time first. I guess the putting my oxygen mask on before helping the ones around me put theirs on will keep us all alive a bit longer!!!
Enjoy your spring! Enjoy this time to see all the new growth God brings forth before your eyes! Spring has always been a time of new beginnings so enjoy everything He puts before you!!!
Thank you so much for your kind reply and your understanding.
I am sorry your daughter has lupus, a friend of mine has it and I know how it can be.
It's interesting that you use the analogy of the oxygen mask being put on ourselves first as on a plane before we can help anyone else as it's one I frequently refer to also
The worst thing in the world is to have worry over our children and I have had terrific problems with my younger son's addictions for the last 15 years and have learned that I am co dependent and am following a 12 step programme which is all about recognising my powerlessness and giving my life over to the God of my understanding. This I will now do with my CLL as I ask for the serenity to accept what cannot be changed.
I read somewhere that stress can bring on CLL ie mess with our immune system, what do you think?
I too believe stress can indeed play havoc with our health. I listened to a talk on YouTube with Kelly Mcgonigal on how to make stress our friend Yeah not a title I would have listened to prior to my new perspective on life. But I do know that our brain is a powerful part of who we are. After listening to this I will be putting into practice some of her advice.
I too have gone through 12 step programs with loved ones and refer back to what I learned. Oh how I love this community and how we all have many more paths that we have crossed other than our own diagnosis!
If you get a chance check out Kelly's YouTube videos
I found your recap of your diagnosis experience and subsequent thoughts quite encouraging. Thank you for sharing it with all of us. As you can see, you are among friends here. I want to personally wish the very best to "the new you" as you move forward. And if and when you every encounter a low moment, you'll no doubt find supportive voices here, too.
I just wanted to welcome you to this wonderful community and let you know that your post was most inspiring ,I hope that you continue to feel well for many years ahead and keep your positive attitude .Many warm wishes.Pumpkin
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Going on with Life?
Low WBC on Venetoclax but feeling ok
1 day into a CLL diagnosis of my husband
