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mhutch1366

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Posts posted by mhutch1366

    Question about "Hot Head"

    in CAREGIVER RESOURCE CENTER

    Posted

    The half-head thing I also have/had, called Horner's syndrome, may or may not also involve pupil's response to light being different in one eye. Something about a nerve in the chest, when compressed causes this split in reaction.

    I'd mention it to the Dr., ask him to check your eyes to see if it is Horner's.

    It's a phenomenon mostly, I got that way after thoracic surgery rather than from the cancer itself.

    Doesn't mean brain mets at all.

    Hope this helps.

    XOXOX

    MaryAnn

    Hot Flashes????

    in LC SURVIVORS

    Posted

    Sounds like what happened with me, only mine started before diagnosis, when the cancer got really bad. Sweats and freezing, in turn. Although the freezing got better about 2 years after surgery ( I lost a lot of weight, so I'm also pretty thin).

    Strange part is the gyn tested me 1 1/2 years out, had estradiol of 1400, he said not menopausal. Two years later it was... 14, which is post menopausal.

    I don't know what happend, but the sweats are very minimal now, don't even know if I could attribute them to menopause. Likely that's what's left.

    This too is survivable.

    XOXOX

    MaryAnn

    Ray A

    in GRIEF

    Posted

    Please accept my sincere condolences.

    RayA was a good man, and I enjoyed his presence here.I'm sorry he's gone.

    Prayers for his family.

    MaryAnn

    Can you take a big breath?

    in LC SURVIVORS

    Posted

    Internal organs rearrange after surgery.

    The good lung moves over, and as you said, the diaphragm lifts up a bit. My heart is in a different place too.

    Rehabilitation or Respiratory/Pulmonary rehab is a series of guided exercises and breathing techniques designed to maximize whatever function is left. I had ben through it once many years ago, and it was great! After my episode this summer with aspiration pneumonia, I'm doing Pulmonary rehab again, and hopefully, it will maximize my lung function and let me do a little more before I run SOB.

    Yees, the cold weather stinks for breathing, but then so does high heat and humidity. There are other things one can do, with inhalers and special meds.There's a new med called Spiriva which works very well. I would recommend you see a pulmonary specialist, or lung doctor, about meds and see if he can recommend/prescribe Pulmonary Rehab for you.

    Breathe easy -- you can do far more than I am able to. With rehab you could do even more.

    MaryAnn

    DEAD MAN WALKING (WEEK # TWO)

    in LC SURVIVORS

    Posted

    Thank you, Patti, for posting for Frank.

    Frank,

    I salute you, my friend, for your courage and dignity under pressure. You are my hero.

    Your love for your family and cyber friends shines through. Know you are well loved in return.

    God bless you, Frank, and Connie and your family. May He keep you all in the palms of His hands.

    You will be in our prayers.

    XOXOX

    MaryAnn

    Pancoast IIIA/B NSCLC -- Now 6 1/2 years....

    in MEMBER UPDATES

    Posted

    Now six and a half years out from surgery, and still NED.

    The results of the Phase II clinical trial which was stopped at 1 year for immediate implementation -- that's right, phase II! -- were just published for the 96 month mark (8 years). They still have not yet reached the 50% survival mark . That means most people are still alive. The pancoast tumors never came back.

    That's the protocol the doctor pulled out at the 11th hour to use on me. From an Abstract, no less, in a Conference Proceedings publication.

    Literally, I was due for palliative surgery of a 13 pound tumor on Tuesday, and Friday afternoon I get a call to see the surgeon in his lab. The Radiation oncologist happened to spot this in her readings, and thought it might be worth a try.

    So I had 25 rounds of radiation flanked at either end by Cisplatin/VP-16 chemo (6 days). 7 weeks later a 14 hour surgery, followed by two more chemos at 1 and 2 months.

    Dam*ed tumor was dead on removal. Never turned up again.

    Talk about random chance, and flukes, and coincidences.... Still shaking my head in wonder.....

    Bottom line is I AM STILL HERE.

    And thankful to be so.

    Although I may not be around much or post much ( I remember Snowflake's comment about my illustrating the ugly truth only too well in postings), I am here, by God's good grace, against all logic and reason.

    I poke my head in and read, cheering your successes and rooting for you in your challenges. I share your tears.

    I just do it more quietly these days.

    Miracles can and do happen. They may as well happen to you as to anybody else.

    But the bottom line is attitude. If you go out with a positive attitude, you still win.

    Love to you all,

    ( PMs or email if you like, I'm here to help, albeit QUIETLY now...).

    XOXOX

    MaryAnn

    1 week from today and I'm scared like never before...

    in LC SURVIVORS

    Posted

    Nancy,

    I had extensive surgery in 2000. I waited for surgery by taking walks, eating really well (steak and green veggies), watching movies to keep from thinking about it all.

    And I prayed, constantly, under my breath.

    Day and night, esp at night. Esp when I got scared.

    I went into my surgery with absolute faith in my surgeon, and put it all in God's hands.

    Took it one minute at a time.

    I had a special mug I bought, and some herbal tea for a special treat every night at 9.

    Bought some good paperbacks, small ones, as I had front and back surgery and limited use of my left arm.

    I did the exercises they asked me to so my shoulder didn't get too tight.

    And I said please and thank you alot.

    This is a good time to be alive and have cancer, the drugs and surgeons are so much more accomplished than they were twenty years ago, or 60 years ago when my grandmother had her double radical mastectomy and radiation.

    An odd blessing , to be sure, but at least one has a chance to think, and to reach out to loved ones. Not like getting hit by a truck.

    I won't say relax, but I will say please try not to tie yourself in knots. You can't spend your time hiding in fear, not even emotionally. So chin up, one foot in front of the other... and keep going!!

    You'll be in our prayers...

    XOXOX

    MaryAnn

    anyone have any ideas? UPDATE saturday morning

    in GENERAL

    Posted

    Shellie,

    Good to see you post, sorry your nephew is ill. From what Theresa says, this is a known thing, treatable, and non-malignant. And kids heal very well. That's all a plus.

    I feel badly for your sister who must feel stretched pretty thin about now.

    You are all in my prayers.

    Don't wait for desperation to say hey, I could use a prayer or three...

    XOXOX

    MaryAnn

    Just checking in

    in LC SURVIVORS

    Posted

    Liz,

    So sorry you're battling nausea and reflux. I was taking zofran 3 x day for nausea for months - hey, it's powerful stuff, works!

    Plus lorazepam (aka atavan). And took Prilosec daily for over a year.

    The only time I felt really lousy was if I hit my gag reflex brushing my teeth the day after cisplatin. I took advantage of all the antinausea meds to eat, felt less bad with something in my stomach.

    Hope you start feeling better. Obviously this isn't a simple problem, but you have to keep up your strength.

    XOXOX

    MaryAnn

    I need perspective on radiation

    in LC SURVIVORS

    Posted

    I agree with Becky. Any day you can get up and put your feet on the floor is a good one.

    My radiation problem has to do with tightness affecting the use of and feeling in my left arm and hand. I had a stay in the hospital/extended care facility this summer/fall, and the shoulder area (my resected thoracotomy area, which was extensively radiated) tightened up quite a bit --fibrosis, which is why the physical therapist kept speaking of radiation as the gift that keeps on giving.

    But -- ain't it grand to be here to b*tch?

    Chin up!

    XOXOX

    MaryAnn

    Chemo Question

    in GENERAL

    Posted

    Hi,

    I was cold almost all the time for almost 2 years. Made no sense, except in having such a low energy level, all my energy was tied up with MUST DO stuff. It finally went away for the most part, but every once in a while I find I'm still chilly. Wear fun socks and fuzzy slippers, comfortable sweat pants and a nice lap robe or blanket. No shame in being chilly.

    XOXOX

    MaryAnn

    My Guy

    in HOPE

    Posted

    It is great to know the rest of the visit went as well as the first part....

    Congratulations, Kasey!

    (I wonder how you pour a person into the MRI..... would have liked to have seen that...)

    Many more spring and summers to come...

    XOXOXOX

    MaryAnn ( Heidi too).

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