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I just discovered I have leukemia
Blood Cancers & Disorders | Last Active: Apr 24 10:40am | Replies (38)Comment receiving replies
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.
Replies to "Thank you so much. It is all very overwhelming and unexpected and I thank you so..."
Good morning, @joeeduffy, I promise you’re not alone here! This forum has been a lifeline to so many of us. It really helps to be able to talk to people who have gone through similar experiences. I always picture this group as sitting around the kitchen table like my mom, grammy and aunties used to do when I was younger. They’d sort through ‘the dirty’ laundry of life and solve the world’s problems. LOL. Anyway, my hope is that you feel like you’ve gained a new family. ☺️
Since we’re sitting at that kitchen table right now, I’m going to offer you some hope and encouragement about your husband’s diagnosis of CLL. I know anytime we hear leukemia or cancer it’s an automatic ‘shock wave’ going through the brain and we typically fear the worst.
CLL is usually very slow to develop and progress. Anecdotal comments from hematologists and also people I know who have CLL, this is something you ‘die with, not from’. If it’s any comfort at all, I had ‘the worst’ of leukemias with a poor prognosis, and yet here I am, sitting at the kitchen table with you 5 years later…perfectly healthy. These treatments can work! So please try not to fear the worst because those ‘what ifs’ just cause unnecessary stress and become a thief of time.
Your husband is making some drastic and positive changes in his lifestyle by giving up smoking! Kudos to him! That’s huge. I’m not sure he needs to give up caffeine though, is this something his doctor suggested? A little caffeine daily with coffee or tea aren’t harmful. If it’s coming from colas & sodas, that’s another story. He’ll want to cut down on excess sugars and the negative side effects of those products.
It’s not easy changing diets in the household but a good, healthy diet plan such as the Mediterranean Diet would be a great place for you two to make the switch. The foods are delicious, simple, with healthy fats. They’re also high in antioxidants which can help reduce inflammation in the body.
There are a number of discussions in the forum for people who have Sleep Apnea, needing BiPap machines. Maybe there will be some pointers in how to get your husband started with wearing his. There are many more conversations you can find by typing in Sleep apnea or BiPap or Cpap machines in the search window at the top of the page.
Here are a couple links to get you started:
https://connect.mayoclinic.org/discussion/sleep-apnea-29d741//
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https://connect.mayoclinic.org/discussion/cpap-machine-for-travel/
Was your husband having symptoms that led to his diagnosis?
When the type of Leukemia has chronic in front of it, it can be treated successfully. I have T Cell Large Granular Leukemia and it is a Chronic form of Leukemia. I'm very proud of your husband for giving up smoking. I lost 6 brothers to lung cancer. Not one of them was willing to give up smoking. I think that you were given a lot of sound advice on this forum.
If your husband was prescribed a BIPAP machine, that means that his sleep apnea is very serious. I was diagnosed with 2 kinds of sleep apnea in May of last year. It took me awhile to find the correct mask which is a nasal mask AirFit n30. I have to use tape for my mouth or a mouth guard since they wanted me to use a full mask. Like your husband, I didn't do well on the full face mask. I came from sleeping less than 2 hours a night to sleeping 7 hours a night. With my T Cell LGL, this has really helped me to get more energy. This will be very important for your husband to find a mask that works for him. There will be many benefits for his Leukemia and for your peace of mind.
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Good luck on your journey together.