Good morning, @joeeduffy and welcome to Connect. I think you’ve found the support group for your husband…and you! Most of us in the blood cancer & disorder group have had our own personal experiences or are supporting family members with an illness and we’re here to offer encouragement and hope.
Your husband has been diagnosed with Chronic Lymphocytic Leukemia (CLL) Fortunately, this is usually a very slowly developing form of leukemia. Your husband may not even need treatment for many years depending on the stage of his disease. When needed, there are treatments which can help slow the progression, giving many patients a long and healthy life.
I firmly believe that knowledge is power. You gain control over this diagnosis when it’s no longer a mystery. Here are several articles that discuss CLL and treatments when needed:
and https://www.verywellhealth.com/chronic-lymphocytic-leukemia-7551732
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https://www.verywellhealth.com/chronic-lymphocytic-leukemia-causes-5210846
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https://www.healthline.com/health/chronic-lymphocytic-leukemia-cll
There are a number of fellow members who also have CLL with several discussions within the group:
Here is one of those discussions:
CLL leukemia: Just diagnosed, what can be done?
https://connect.mayoclinic.org/discussion/cll-leukemia/
You’ll meet @kegraves @justinesmith @5gk @rlybolt and other members with CLL.
Many more can be found by typing in CLL or Chronic Lymphocytic Leukemia in the search bar. Don’t hesitate to jump into any conversation.
I know you’re worried how life will change for you and your husband with infection risk. With a blood cancer your husband’s immune system might not be as robust so it’s important to avoid illness. It might be advisable to wear masks in public settings such as crowed stores, church, elevators, etc. Use hand sanitizer after pumping gas, using door handles…that type of thing. Travel is fine, just wear an N-95 or KN-95 mask on planes and take some sanitizing wipes along to wipe down seat belts, trays, switches, armrests so that you are in control of your environment. I had an aggressive form of leukemia requiring a stem cell transplant, but I am cancer free now. However, I still use all the safety protocol when out in public. Even in our home family, friends and workmen are asked to mask up. It’s second nature now.
There’s so much hitting you and your husband right now. It just clips you off at the knees! But you’re going to find out as you get into this that your lives will fall into a routine and you’re both going to be able to exhale again.
It will be helpful to sit down and talk with your husband’s doctor. Does your husband have a followup appointment?
Thank you so much. It is all very overwhelming and unexpected and I thank you so much for really reaching out to me. So often, there are places that they say that you can go for help and talk and it falls so short. So short meaning you are sitting alone and no one ever responds.
My husband does not want anyone to know anything as of yet because we don't know 'much'. In answer to your question, he just got the (additional) bloodwork and bone marrow tests completed yesterday (2/1), his CT scan is set for 2/13 and his follow up appointment is on 2/29.
In the meanwhile, we are celebrating that he has quit smoking (3 days now) a week and a half with him cutting down thanks to the Chantix and we are going to try and find a nice menu (aka diet plan) that will help cut down on sugar, and all of the things that need to be done.
He also is a caffeine drinker so this is going to be a tough one as he already quit smoking and I don't even know what to do here. I have half caff pods that he said he would 'try' next week. Rome wasn't built in a day after all.
He is supposed to be wearing a BiPAP for sleep apnea but has not done so since we got it. So that is another thing that we need to work on and I am hoping to get an appointment to go with him to see if there is a less invasive mask for him to wear. It affects him and me so this would help a lot as well.
I don't have any 'real/close' friends where we live but have my sister and his family to talk to. And, I appreciate any help/guidance/assistance/words of wisdom/advice/virtual hugs, etc. that anyone here can give.