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Patkid

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    My turn to need a little support...

    in GENERAL

    Posted

    Melanie

    It is plainly time for the referee to throw the flag for "piling on".

    We are so so sorry for your worry and concern.

    Please consider yourself hugged and cared for............and know that we are praying for your family and a respite from worry.

    Love and prayers.

    Pat and Brian

    Need some input........not sure where to post...

    in GENERAL

    Posted

    You guys,

    I want to raise some things with you..........please read and share your feelings or reactions.

    I am leaving room for the possibility that I am in the throws of denial or that I am emotional to the point of irrationality........but I still want to ask this and I have come to feel safely enough in this group to take this risk.

    Is it possible that Brian was mis - diagnosed?

    Points:

    He is/was not sickly

    He was working 10 hour shifts at night

    He had no pain

    The naggy cough he had was attributed to Monopril - a med he was on for 4 years.

    He had / has not lost any weight.

    He had 2 instances of breathing "funny" in the last 6 months, but both times were after exertion and lifting and he describes them as more like he was "out of his breathing rythm" than experiencing shortness of breath.

    He was able and still can walk for 20 uninterrupted minutes on the treadmill at 3 miles per hour.

    Last fall we took many "laps" around the walking path with no sign of fatigue from Bri.

    PCP and ONC both said that Brian's "presentation" did not match the lung x-ray, CT Scan, PET SCAN.

    Onc said that he was "PUZZLED"; that the best diagnosis he could come up w/ was poorly differentiated LC. He said that the "stains" they did on the biopsied matter were inconsistent in many ways with the microscopic findings. He said that the tumor had some characteristics of sclc but that only showed on the staining that was done.

    He repeated that he was puzzled.

    Brian and I could see the Liver tumor on the CT Scan and on the PET Scan. It seemed at least as large as the Lung tumor (lung tumor is in upper left lung.........inoperable due to size (5cm) and proximity to arteries, heart and "nerves that control breathing"), but the liver was never biopsied.

    ONC told us not to have Brian work

    Onc told us to begin paper work for SS disability

    Onc did not discuss stage or prognosis

    Onc said Cisplatin and VP16 for 2 rounds/Scan and either continue or change chemo drugs

    Brian tolerated chemo well.

    After he got Protonix for heart burn and Lasix for bloating he came right around and ate well and only felt fatigued and lost his hair as symptoms of the chemo.

    I repeat: Brian is NOT SICKLY

    Brian states that he does not have the sense that he is really really sick.

    Is a biopsy difinitive??? If the biopsy says LC does that mean LC?

    They got a really good amount of matter in the ct assisted needle aspiration biopsy..............Onc left no room to think that he was unsure of LUNG CANCER --- Just what kind.

    Brian really likes the ONC because he did not show any sign of treating Bri as "hopeless" He seemed very eager to get going and "go after" the cancer. Brian loves the cancer center (OSF ST ANTHONY center for Cancer Care in Rockford IL.) and the fact that it is a short drive from our home. He connected with the ONC right away.

    I just can not believe that he has cancer.

    ........Thank you for taking the time to read this. I look forward to your input.

    Brian's right.........this is the REAL DEAL

    in GENERAL

    Posted

    Ohhhh........

    we get it now.............

    When they say you lose your hair...........

    YOU LOSE YOUR HAIR

    Brian thought he was being pro active by visiting his barber

    when the clumps started coming out. He got a "marine do".

    HOWEVER

    All the little hairs still kept coming out...........and now they

    were "bristly" and "itchy" and all over his clothes, his pillow,

    his ball cap..........his chair..........

    (he told me I should have opted for a poodle...........)

    We ended up putting a dining room chair in front of the TV and,

    while Bri watched his driver, Dale Jarrett, get caught speeding on pit

    road during the Nascar Race, I shaved his head.

    We managed to laugh and Bri quoted all the loving messages that

    were left for us when we first posted about his hair.

    It feels so good to have people "GET YOU" and understand your

    feelings.

    Thank you

    Thank you

    Thank you

    Pat and Brian (who looks really just fine with NO HAIR.......) Bless his heart and Bless all of yours'............

    5 for 3/20

    in GENERAL

    Posted

    Brian and I are in total agreement on our list:

    1) LCSC

    2) The understanding & Compassion shown us

    3) Folks being able to describe exactly what Brian is feeling

    4) The clear and constant understanding that we are not alone

    5) LCSC

    Thank you for being here.

    Brian asked me to mention that I do the typing on line as he only has one hand.............

    He is laughing and saying he is about as handy as a one armed paper hanger.........................

    We are feeling positive today and ready to begin next round of chemo on WED.

    5 for 3/19

    in GENERAL

    Posted

    It is 8 PM........................it has been a crappy day...........

    But

    Just when we did not think we could come up w/ our contribution for the day: here are our 5 for 3-19

    1) Cindi gets how Brian feels about losing his hair

    2) Cindi took the time to tell us that

    3) Cindi felt it, survived it and has hair today

    4) Brian has renewed hope and determination

    5) LCSC................our Grace for the Moment.

    Good night, and thank you for being here.

    Visible Sign

    in GENERAL

    Posted

    Welp,

    We knew it could happen and that it probably would.

    Brian's hair started to come out in big clumps yesterday. He went to his barber and got what was left taken off. His scalp is sore and he is really self conscious.

    He had the most beautiful gray/white hair.

    He had been gray since he was about 24 years old.

    I told him that I have heard that when the hair grows back it will be even thicker and maybe curly.

    I think this is so hard because it is a visible sign of what we are still trying to accept is going on inside of his body.

    Brian said: "I guess this is the real deal."

    Next chemo infusion begins Wednesday and continues on Thursday and Friday.

    Brian is being such a good sport and I love him so much and I am so sad.

    Thank you for being here.

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