I called WFBH back this morning to verify exactly what was going to happen. The lady I spoke with said she wasn’t sure but would send an email to Dr. Ellis and ask. Splendid idea! Hopefully I will hear something back before the appointment on Wednesday so I can cancel if it’s unnecessary. On the other hand, it might be helpful just to hear another doc’s opinion on my condition and ask some more probing questions. We’ll see.
Currently I’m trying to set up a time this weekend to tell all my kids. That will make it real!! It’s kind of scary thinking about it but they need to know in case something suddenly turns worse…or better!! I would rather deliver bad news initially then follow it up with good news later than the other way around. At any rate, it looks like it will be sometime Sunday when I make the call.
While I was running/walking yesterday it occurred to me that my stamina may suffer from LGLL as it progresses. As the lymphocytes crowd out more of the oxygen carrying red blood cells I can see that I would have less stamina and get tired quicker. That’s where the anemia symptom comes in. Less RBCs means less hemoglobin, which is what actually has the oxygen carrying protein attached to it. In sports medicine lingo, my VO2Max will diminish. That’s actually somewhat ironic since I spent so much time last year training to improve it. All that high intensity interval training may ultimately be for naught. But, no one can ever take away my sub 25 minute 5K race that I ran last year at Beat the Heat!! So far, that’s my personal best but I’m going to try like hell to place in that race before I can’t run anymore. On my bucket list!!
I was finally able to nail down a time to talk with all four kids simultaneously. It will be Sunday at 3:00 pm. I think when everything is fully explained to them about the disease and life expectancy they will be okay. I want them to be okay, but I want them to know. This circle of life rolls on and on and we rarely know when it will stop for us. I have four incredible children who will carry on the circle of life for me.
Tonight, Mari Jo and I discussed telling my brother and we decided it was a good idea. We wanted to get his reaction as to whether or not we should tell mom. We decided to call him and inform him of my diagnosis. He took it in perfect stoic stride, I wouldn’t have expected anything different. Certainly not “Holy fucking shit Bro – that’s awful!” or “I can’t believe that! Not you!”, not even “I’m sorry Bro!” He’s not the emotional one, he’s the thinker. His best attempt at disbelief or compassion was “Well, Bro that’s not the best news I’ve heard today.” When you hear shitty news about someone you love, your fucking brain locks up and more often than not, the most encouraging things do not come out. It must take the Hospice workers years of training and experience to short-circuit that automatic brain shut down.
Don’t get me wrong, I love my brother and this kind of thing makes me wish the distance between us hadn’t grown over the past 3-4 years. We don’t talk on the phone like we used to, we don’t visit like we used to, and on the rare occasion when we do, we don’t crack jokes and tell pointless puns like we used to. I always thought that he would outlive me and unless he does something bizarre in the next ten years, it will be a reality. I’m fine with that. Really I am.
While I was running/walking yesterday it occurred to me that my stamina may suffer from LGLL as it progresses. As the lymphocytes crowd out more of the oxygen carrying red blood cells I can see that I would have less stamina and get tired quicker. That’s where the anemia symptom comes in. Less RBCs means less hemoglobin, which is what actually has the oxygen carrying protein attached to it. In sports medicine lingo, my VO2Max will diminish. That’s actually somewhat ironic since I spent so much time last year training to improve it. All that high intensity interval training may ultimately be for naught. But, no one can ever take away my sub 25 minute 5K race that I ran last year at Beat the Heat!! So far, that’s my personal best but I’m going to try like hell to place in that race before I can’t run anymore. On my bucket list!!
I was finally able to nail down a time to talk with all four kids simultaneously. It will be Sunday at 3:00 pm. I think when everything is fully explained to them about the disease and life expectancy they will be okay. I want them to be okay, but I want them to know. This circle of life rolls on and on and we rarely know when it will stop for us. I have four incredible children who will carry on the circle of life for me.
Tonight, Mari Jo and I discussed telling my brother and we decided it was a good idea. We wanted to get his reaction as to whether or not we should tell mom. We decided to call him and inform him of my diagnosis. He took it in perfect stoic stride, I wouldn’t have expected anything different. Certainly not “Holy fucking shit Bro – that’s awful!” or “I can’t believe that! Not you!”, not even “I’m sorry Bro!” He’s not the emotional one, he’s the thinker. His best attempt at disbelief or compassion was “Well, Bro that’s not the best news I’ve heard today.” When you hear shitty news about someone you love, your fucking brain locks up and more often than not, the most encouraging things do not come out. It must take the Hospice workers years of training and experience to short-circuit that automatic brain shut down.
Don’t get me wrong, I love my brother and this kind of thing makes me wish the distance between us hadn’t grown over the past 3-4 years. We don’t talk on the phone like we used to, we don’t visit like we used to, and on the rare occasion when we do, we don’t crack jokes and tell pointless puns like we used to. I always thought that he would outlive me and unless he does something bizarre in the next ten years, it will be a reality. I’m fine with that. Really I am.
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