If anyone has wondered where I`ve been, I didn`t fall off the face of the earth I just forgot about my e mail site

ok I just remembered that I have e mail and I had a zillion messages. Why? One memory, I forgot about my e mail. Two, I discovered Facebook from my new oncology group and found all my relatives hiding there. Now they are at my mercy. Also I forgot about my e mail because I got pneumonitis from zydelig was in the hospital getting three different antibiotics for 2 weeks and when that didn`t resolve the "problem" then I was sent to a larger hospital to have a lung biopsy to take a culture because they THOUGHT they saw something at bottom of one of my lungs and it has been a painful journey worse than CLL itself. I believe part of the memory loss is due to the pain killers I had to be on from the surgery since we just don`t heal as fast like other folks. They told me they would have results in couple of weeks which now have turned out to be much longer and nothing has grown in the culture. So the wait goes on. So far I was DX with organized pneumonia which is a fancy name for pneumonitis! I am on O2 as my level has hovered below 90 % and suffering pain from the incision sight around to the front over my liver. I hope to get some cancer free living in before the next blood test tells me my short "remission" is over. Then I will be back to deciding what to do next!!

15 Replies

  • Glad to see you are still fighting! Enjoy connecting to relatives on Facebook


    UK Marc

  • I can`t let my relatives and friends down acting like a "wimp" even though I feel like it. Cancer is a scary thing in itself.

  • My goodness, you have had a rough time. I wish you a speedy recovery, and glad to hear the culture hasn't produced anything.

  • thank you.

  • Sorry for your rough time. Hope you're on the upswing...


  • thanks getting there!

  • thanks.

  • thank you!

  • Sending huge supportive best wishes to you greygirl as you struggle through a very rough time.


  • thanks I wish I was a lazy person who loves laying around putting cold compresses over my liver and taking painkillers everyday!

  • I was diagnosed having mycobacterial avian complex although I am asymptomatic. But it takes about 6 weeks for a diagnosis after an endoscope. This along with my CLL worries me but so far both have been easy so far. I hope your rough time is behind you now.

  • well, I finally got results today, of biopsy they actually sent it to Mayo clinic in Arizona for I guess second opinion. They confirmed I have a form of pneumonia due to drug trauma. Its called acute eosinophilic pneumonia. There`s another place they need to look for infection--at my incision site!!

  • not yet. Sounds like you got one of those weird, rare illnesses like me. What`s worse the endoscope or biopsy? I hope your results come faster than mine did. If we wait long enough they may resolve on their own!

  • What an ordeal!

    Happy to see you back now!

  • thanks just went for blood test after 2 months see if I have some kind of "remission". The fact that my skin is turning the color its supposed to be{not pale) I think I`m ok. When it starts fading I know I`m in trouble!

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