Trying to settle into my new norm

Diagnosed in early July with count around 21k, probably had it since late 2015 when my count was at 12k during a physical, my GP thought I was fighting allergies or a cold. I probably spent way too much time on the internet, there are days where I feel hopeful when you see posts of people with cll go 10+ years without treatment and symptoms and then others where they had good markers that seem to not make a difference and got symptoms and entered treatments within a year or two. Told very few people due to the few I told were devasted. I don't smoke does not run anywhere in my family and I'm am a young looking very fit 55 year old that looks in his early 40s. All sounds good except every morning I wake up wondering what that day will bring. I know I need to live my life but with all the hiding from friends and family is difficult. I keep hoping that I can be one of those success stories but also want to be realistic about all this. It's very strange knowing potentially your on the clock. I'm not sure you every get back what you had before the e ability to look ahead make plans for retirement, grandchildren, etc....

13 Replies

  • I was diagnosed in August and still trying to make sense of it. Mine was found while doing a breast biopsy. So two things going on. Breast biopsies (18) have come back benign but Dr is still not satisfied. I have an excisional biopsy scheduled for 9/15. I am female 67, still working, active no HBP, high cholesterol etc. and quite honestly in shock!! My lymph nodes are enlarged in my neck and under arms. I am trying to learn about CLL and not panic. I am thinking W&W is good because it gives the experts time to find a better treatment. Good Luck let's learn together.

  • Wendy, Sorry to hear your recent diagnosis. The one thing that seems to be important is read and understand as much as possible. My first diagnosis was from a Doctor that was so vague and almost like it was no big deal, he made his diagnosis from blood work only, never check my lymph nodes, more or less told me that I had cll and come back in three months. I went for a second opinion after finding a more reputable and know Medical center, they did an MRI (was complaining about my ears ringing) and Pet scan, bone biopsy essentially put me through a process so that I at least felt more confident that they are on top of the new trials, clinical and everything anything else that may help me get through this. Everyone says you have to be your own advocate which I believe is so true. The tough part is there is so much on the internet to absorb and understand, some of it is comforting with many success stories and some of it is above anyone's understanding unless your in the medical profession. I find certain sites like this help explain and bring both comfort and a better understanding of CLL to make the right decisions. Its tough to really share with anyone and places where I can discuss this seems to be helping. I wish you luck and agree we all have to learn together.

  • Superdad3,

    I read your post and saw my situation in very similar terms. My dx was in April of this year and it was a complete shocker. I'm 63, but very fit and a non smoker. I eat right and have been a habitual fitness buff. I did all the right things, but I still ended up with SLL (CLL's cousin). After a brief period of fears and tears with my wife, we moved into discovery and education as we endure W&W.

    Like you, I let only immediate family and a few close friends know of the situation. I've kept it close because I did not want it to become the topic of conversation. My life is larger than this condition, so I plan to stay quiet about it.

    The big adjustment is what to do next?? I had just retired and we had big plans for the next couple of years. Given the dx and and the unknowns of where it was headed, we have parked our plans for the time being. My feeling is we will stay parked for this first year. After that, we should have a pretty good idea of what we are facing and our plans will reflect that.

    At this point, I've accepted this new reality. And the education process has given me a fair bit of hope in terms of the newer treatments, which will only get better by the time I need something. My advice to you is to make sure you are getting the best possible medical care and advice. Make sure you are seeing a CLL specialist. Give yourself the best chance at a great outcome.

    In any event, I wish you the best.


  • Dave thanks for the nice email! The wait and watch is tough. Every morning I wake up wondering what the day will bring. I have a specialist which scheduled me to go in Jan for a blood test to monitor my progress. I am hoping for no spike in my counts but also trying to prepare if there is. Best of luck to you also!

  • HI superdad my husband was diagnosed at the same as you and for the next 18 yrs had no health issues, and continued to work and we lived life as normal.My my advise would be to stay as healthy and positive.He went for regular check ups and its only last year the cll raised its ugly head so he went on the FCR trial and is now in remission .Live life to the full thats our motto. hope this helps. SInce his chemo he has walked parts of the coastal path 3 times ,life in the old dog yet .regards jenny

  • Thanks Jenny. Do you remember what del he had and his counts when diagnosed? Also did they stay the same over those years or climbed?

  • i am sorry i cant remember but he saw the consultant every year for 12 yrs and in that time his bloods change a great deal.then i noticed his ears were swollen and as we were moving and we had been transferred to a new consultant and he had an appointment to see her we mentioned it , she then made an appointment for him to see a dermatologist who did a biopsy which showed cll in the skin.After the bone marrow biopsy, it was decided to put him forw.ard for a trial and he was excepted for f c r, which has put him into remission. well now we come to the diet he just carried on as he had been doing so for 12yrs had no problems the only thing he did was reduce his working hrs to 40hr and 5 days a week.he retired at 65 and still takes the dog a walk twice a day.Just make sure you get your flu and pneumonia vaccination check these with your consultant.I dont say chemo was an easy ride but he didnt have any major problems.Superdad if you you feel something is not right no matter how small get it checked.If in doubt shout ,you know how you feel .Hope this help

    keep in touch jenny

  • Jenny greatly appreciate all your advice and sharing your husbands experince.

  • Rest assured, you will re-gain the ability to look ahead/retire/grandkids (subject to your children wanting children themselves). As soon as we are born, we are on the clock - it s the one certainty of life! The only unknowns are how/when and quite possibly that has not changed for you.

    I was younger than you on Dx and would like to think similar re fitness/youthfulness.....(some might think I am deluded!). You will be in shock now and that lasts for months, but gradually a longer term perspective returns. As a bonus, many people feel that appreciation of the here and now is more acute. I found it helps to set goals closer than say retirement - so my first is to get kids to University (set 4.5 years ago and will be achieved in 3 years...). After that is to see my consultant off into retirement!

  • Hey, all, I feel ya! Dx'd in 3/17 at age 56, having led a super clean lifestyle my entire adult life. I've been a yoga instructor since 1979 and have always been vibrantly healthy. CLL was caught on a blood test I had cuz of a weird rash that wouldn't go away.

    I've settled into this new me pretty well ~ still have times when emotions run high ~ my guess is that we all do. For me, learning everything I can about this disease (I'm a Registered Nurse) and staying current with emerging information helps me stay balanced, as does my yogic/spiritual life.

    Prayers and blessings to all of us!

  • This disease is a huge mental challenge. We want to fix what is broken and we cant! Dx at 49 6 years ago with 2 young children. Just started treatment probably earlier than I absolutely had to. 11q del, unmutated, complex karyotype. Hope is the key to keep fear at bay. Lots of research around the world going on. You can be fatalistic...whatever happens happens. You can be grateful you dont have a worse cancer. You can be grateful you didnt get hit by a car today which hundreds of people probably did. So hope, gratefullness, taking one day at a time help me to keep the fear at bay and lesson anxiety. Finally better diet and exercise cant hurt. We are the only species that know in advance we will die so nothing really new. Find distractions so you dont obsess on the disease. Easier said than done!

  • Hi folks. SuperDad you expressed how I feel when I allow myself to think too much about CLL. It's early days for me too (my story is shared elsewhere on here). I've been seeing a psychologist which helps a lot (and gives me a space to think about it all so I don't think too little about it!). I am also starting to regret not telling more people. But having said that you can't untell someone! I think you need some people that you tell and can talk to about it.

    My biggest issue at the moment is the terrible fatigue and weakness in my legs. Which I ---hope--- is recovery from the pneumonia that led to my incidental diagnosis. Today I was struggling so much to walk through the airport I had a little cry. I'm worried at times that it might be the CLL rather than pneumonia. But in the light of enjoying every moment and seeing positive blessings that are sent to us, I spoke to someone on the plane who had pneumonia years ago and who said she'd felt rough for months afterwards. It's the waiting that's tough whether for numbers to go up or in my case hopefully energy to return. But like someone else said on here the only difference between us and the rest of the world is that we KNOW we are mortal rather than deny it. I say enjoy every moment you have and cease the days!

  • Adrian

    I hope you feel better soon and it sounds like more the pneumonia than the cll. A year before I actually knew I had cll I went through a period where I felt really tired and knew something was off not realizing it was probably cll. My body seemed to adjust so right now not as tired like I was. I thought about talking to someone like therapist and still may. I am on a roller coaster with ups and downs trying to find my balance. Yes I agree every moment seems more precious whether it's with my kids, friends and family.

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