Pure Misery...

     To say I am in misery is an understatement...I cannot utter a word as my tongue hurts so badly to move... I cannot drink anything but plain water and ice chips. My tongue is blistered on the underside and tip...I numb my tongue 4 times per day and get a tiny bit of relief for about 10 minutes... No food as I cannot chew...It is simply excruciating...This is by far the worst ten days I have experienced in this whole cancer mess...So typing is literally my voice right now...
     I finally uttered those words to my husband last night that I thought I would never utter... "I think I'm about to give up" He said so sofly "no" But he loves me and hates this suffering and would be behind me if I decided to stop this terrible treatment.
    I don't have any idea how I will make it through going to the cancer center twice a week for 12 weeks when I am in this poor of a physical condition to start.  I missed out on Fathers day with my Dad...Could not even call and say the words "Happy Father's Day" to him...HEARTBROKEN...that's how I feel ...for me and for all that I have had to miss out on...and for how hideously bad I have to feel...
     Then Tori came in not knowing of course how beaten down I am as I do not cry in front of them or let them see how bad it is ...She had been to a sleep over and her sweet little face looked at me and she climbed into bed with me and said " I missed you I always miss you when I am not with you..." and I thought I can never willingly leave them...I cannot give up it is not an option...

     I'm really wondering if my Miracle is ever coming...Maybe I'm not meant to get one...Not every prayer is answered, not everything ends well...
    But I have to do all I can on my end to know in my heart I tried my very best for these girls...
    
     This is what has been going on the last couple days...

     Friday June 14th Finally broke down and called the cancer center about my mouth... called after they closed because I see blisters now all under my tongue and all over the tip...when I looked it up it looks like mucositis which goes through your entire mucous membranes and through your digestive tract ... So not only is the pain unbearable but since I am neutropenic the ulcers could get infected and I could end up... septic again...Dr Peracha was on call and called me back and was extremely nice and informative... He told me to not eat it will only make it worse...To have everything icy cold and to drink and get my nutrients through there until my counts rise and the membranes have a chance to heal. He said this is expected to happen with the aggresiveness of my chemo meds and that the side effects are accumulative and I was hit four times with large doses. But that infection is a huge concern. So he now called in an antibiotic and Nystatin one to cover bacterial and one to cover fungal infections. If I get a fever I am back in hospital regardless. But hopefully the antibiotic will cover it... He and I was glad that I called...I knew it was getting past the point of a normal side effect... I am very worried about how I am gonna have 12 more weekly treatment when it causes the same side effect. If my membranes stay this way it will impede or stop my treatment so I could really use some prayers...I need to have these treatments they are my best chance at survival...and not having a recurrence. As well as I am HUNGRY and now have been told not to eat that it will irritate it worse and could cause infection. So Boost and vitamin water and ice water until the sores alleviate...and praying for no infection.

   

    Sunday, 6/16 I had an allergic reaction last night my face swelled, I had hives on cheeks and was really itchy around my eyes and mouth. I called the answering service at 8 and told them I was having a reaction and asked "do I go to the ER even though I'm so neutropenic? and do I continue the other antibiotic and risk infection or quit both? "The Dr didn't return my call so after waiting 1.5 hours I had to call them again at 9:30 and tell the lady at the answering service "look I am neutropenic if I get an infection it could kill me and an allergic reaction could kill me I am trying hard to stay alive here"...Finally got a call from Dr Peracha at 10:30...2.5 hours after my original call. He said since I wasn't having difficulty breathing and from my description it did sound like the nystatin caused it you only swish and spit it so it caused a "local reaction". Good thing I could breath I thought or I would have died in the 2.5 hours it took to get a 4 minute phone call back.But to continue the cipro and watch closely for signs of reaction there...He told me to take double the normal dose of Benadryl to help the reaction and to let me sleep. And sleep I did for about 6 hours... But now I am back to the same tongue issues. He wants me to wait and let the reaction calm down before we try another antibiotic for the tongue... And if reaction comes back go to ER. So frustrated that things that are really a big deal take hours or days to deal with through this cancer center...I will be calling the manager again as well as UPMC corporate on MON. The DRs are on call for a reason...and this was not a little reason. 2.5 hours is unacceptable! The reaction seems to have quit so I can add another drug to my do not take list

      I had my last and final course of Adriamycin and Cytoxin chemo 12 days ago...Today is 6/17 due to start 12 straight weekly treatments of Taxol chemo on the 26th.

     So, as I was typing this the cancer center called they have an appointment set up for me with the cancer center today to see the physicians asst... I would rather see my doc but will take what I can get at this point...I will update soon as to what they do to help me...

    But I need prayers now more than ever... xoxo