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MaryO

~Chief Cushie~
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Blog Entries posted by MaryO

  1. MaryO
    Always something!

    I woke up last night with numb tingly wrist and ring finger.  In the last few days, I've had to move my watch band out a notch.
    I've been on Omnitrope .3 growth hormone for a couple months and just finished my second cartridge.  Emailed Dr. Salvatori for advice.
    A couple weeks ago it felt like my wisdom tooth lower left was coming in and I generally felt like something was happening with my jaw.  That's evened out now.
    Naturally, my second shipment (2 more cartridges) just came, along with their co-pay, so I hope I don't have to throw any of that away.
  2. MaryO
    After an 11 year break due to kidney cancer, I went back on Growth Hormone (Omnisource) just over a week ago.  I'm not feeling a whole lot different yet but I am keeping a journal on Carezone.  If anyone is interested in following that, please PM me your email address.
    I may be going off it again if things don't improve - I'll give it 2 months to see improvement but after that, no.  I really can't afford or justify the copay of $535.
  3. MaryO
    July 22, 2008:
     
    These 3 blogs were all hit by my hacker a few weeks ago.
     
    The new Cushing's blog is http://cushingshelp.blogspot.com/
     
    The new Barbados blog is http://beautiful-barbados.blogspot.com/
     
    The new music studio blog is http://oconnor-music.blogspot.com/
     
    I'm hoping by hosting these through Blogger instead of on my own server they won't be vulnerable to hackers anymore.
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
     
    Original post:
     
    I spent the last couple days making a new blog - actually 3 of them, none what I intended.
     
    It was my idea to start a blog for people who updated their bios often so I set about looking at blog skins. I liked one of the tropical ocean so much that I decided to make one for our Barbados vacations. I already had a website that grew out of my posting info for guests who would come to stay with us.
     
    The new Bajan Blog is at http://barbados-crane.com/blog/
     
    Then it occurred to me that maybe I could attach one to my site for my music studio where students/parents could ask questions. And http://oconnormusicstudio.com/blog/ was born.
     
    Finally, I got back to the Cushing's one...and decided to use it for me. I renamed it Cushing's, Cancer & Music since those are the main components of my life these days. That one is at http://cushings-info.com/blog/
     
    Feel free to check any, all or none out and comment if you want. Now I hope I have enough to say to keep these going! LOL
  4. MaryO
    Wow! I guess I haven't been on the boards for 2 weeks or so I see that I have dozens of PMs to read, many emails to check/answer and I missed at least one person who had ordered an Awareness Bracelet that I never sent
     
    My Monday appointment with the surgeon went ok. He took blood/urine and was going to send me for CT scans. That day, as I recall was very cold here with a wind chill of something like -7o
     
    I came home and taught my piano students, as usual.
     
    Tuesday morning I woke up and my back hurt. I assumed it was from the cold combined with my arthritis. That got worse throughout the day so I called my PCP. Naturally, he was away until the 19th but had a substitute I could see Wed. I didn't want to wait because the pain was excruciating by now and I couldn't get out of chairs or sofa without using the walker I had from surgery to help pull me up.
     
    So I called my husband at work and he said he'd come home and take me to the ER. I had been supposed to have handbell rehearsal that night so I called my director and let her know I wouldn't make it. She assumed that Tom (husband) would be home sooner than he was, so she got the associate pastor from my church and they headed to the ER to wait with us.
     
    They asked about me at the front desk and were assured that I was there although they didn't see me. I guess they thought I was with the triage nurse or something. So they waited. Then a Melissa O'Connor was called... My people realized it wasn't me and left.
     
    Finally, Tom got home - he had really important work to do (sarcastically said!) and I got to the ER about 6:00PM. Last time I was there, they told me I had kidney cancer, so I was hoping that there was no rerun of that experience!
     
    The triage nurse let me wait on a gurney instead of one of the hard plastic chairs in the waiting room.
     
    Unfortunately, they also wanted blood and urine. My only good arm had been used by the neurosurgeon the day before Luckily the nurse finally got the IV in to my other arm. I guess my veins are a bit better post-Cushing's. No collapses this time.
     
    They did CT scans (so I don't have to do my surgeon's ones - YEA!) and XRays and found basically nothing except lung nodules that hadn't grown much since my last scan - say what? I didn't know I HAD lung nodules.
     
    I got some percocet and they sent me home with orders to see the sub PCP in 2 days. The percocet didn't do much except make me sleepy/groggy. My days were spent watching TV and sleeping. Even sitting at the computer or the table was too painful.
     
    Tom took me to the sub PCP on that Friday and she's sending me to physical therapy.
     
    Until yesterday, I didn't drive at all, and the weather has been awful, so I haven't even called about the PT yet.
     
    There is still a little pain, and I need the walker to get out of bed, but I'm doing much better.
     
    A weird side thing - Tom was driving my car since it's a van and much heavier than his midlife crisis sports car. The van does much better with snow and ice that we had the last couple weeks.
     
    One day he got it home, slammed the door - and the window slid down into the door. Somehow it got off the tracks. Luckily the glass didn't break. So that was a bit of a problem and $. No one had ever even heard of this problem before.
     
    Anyway, I hope to get to your PMs, emails and whatever ASAP!
     
    It feels a bit weird being here - like my baby has grown up, left home and doesn't need me anymore. Can you have Empty Nest Syndrome for message boards? LOL
  5. MaryO
    Since I had surgery for kidney cancer May 9, 2006, I've been looking around for somewhere to read and talk about this with other survivors (hopefully!) I haven't found anyplace I'd like to visit or feel comfortable with yet, so I decided to make a new blog here.
     
    I'm sure that my recovery will be much the same as for any other major abdominal surgery, although I'd like it to be faster
     
    Before my surgery, I didn't have time really to consider that I had cancer, and what it meant for my life. There was no going from doctor to doctor, running a different test each week, suspecting that maybe... Just boom, there it is. Cancer.
     
    Now that I'm about 6 months post-op, I'm thinking more and more about this and how it might affect my future. I know that there are going to be lots of scans, every 3 months, just to be sure that there wasn't a cell hiding out.
     
    I know I have to be careful with meds - no NSAIDs so my arthritis is worse. I can no longer take hGH (recombinant growth hormone by daily injection, due to panhypopituitarism) even though I'm deficient. In 5 years (if I survive!) I can take the GH again, supposedly.
     
    I'm supposed to be eating less protein, more fruits/veggies, drinking more water.
     
    And I'm supposed to avoid playing football and other things that might damage my remaining kidney.
     
    Normally, I know how very lucky I am. I just reread the path reports and know that the tumor was already hemorrhaging around the borders and the cysts contained hemorrhagic fluid. Things could be much worse.
     
    Sometimes, at night when I can't sleep, I wonder why I was lucky like this. What haven't I done with my life that I should. Seems to me that I've accomplished what I should already.
     
    And, in the night, I worry about the cancer returning, taking my other kidney or worse.
     
    At this time, there's no standard chemo unless it's metastasized, although there are some promising clinical trials. Radiation doesn't seem to work for this kind of cancer, so if it returns it's more surgery.
     
    From my past posts:
     
     
    and
     
     
    I plan to keep a kidney cancer journal of sorts in here, so years from now I can look back and laugh and wonder why in the world I was so worried.
     
    I just updated my bio. I said:
     
    People mostly assume that everything is OK with me because I am not getting chemo or radiation and because I look so "healthy" (thanks to the Cushing's/daily Cortef!). They figure that if there was any real danger of the cancer metasticizing that I would be on chemo, like other cancer patients do.
     
    They don't understand that I have to wait and pray because there are no approved ajuvant treatments. If/when my cancer returns, it's just more surgery. If I'm "lucky" enough and get to a stage 4 THEN I can have chemo/radiation as a pallative measure.
     
    Aarrggh! Do I see starting a kidney cancer support group in my future?
  6. MaryO
    I'm so pleased with myself. This morning I just did a local "Turkey Trot", just the walking part, but I made it 2 miles and didn't need the extra cortisone I brought just in case.
     
    This event benefits the local Life With Cancer center where I take some classes. It's such a neat feeling to be out there with 4,000 others, all running/walking/trotting/pushing strollers/walking dogs for a common cause. This event today took in over $250,000. Amazing!
     
    My son and husband ran (one way faster than the other!) and my mom and I walked. It was so cold and rainy, but what a sense of accomplishment! I had no idea if I could do that or not, but now that I have, maybe next year I'll be running too. (HA!)
     

  7. MaryO
    Last I wrote, it was about all these glorious blogs I was creating.
     
    A couple weeks ago *Poof* and they were all gone
     
    My personal blog contained:
     
    A journal about how I felt about my Cushing's years after my pituitary surgery.
     
    How I was feeling about life.
     
    Notes about how I felt about my kidney cancer (Renal Cell Carcinoma) 2 years after my diagnosis and surgery.
     
    Information about news in kidney cancer treatments, links to other good sites, comments from friends and much more, all lovingly collected and saved. Until a hacker inserted a couple lines of code somewhere and took the whole thing down. Not just that blog but several of my sites that use a form of code known as PHP.
     
    I can't rebuild the blog that I lost but I can start again, once more...
     
    Check http://cushingshelp.blogspot.com/ for updates.
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