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About this blog

Just me

Entries in this blog

MaryO

Carpal Tunnel?

Always something!

always-something.jpg

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.

MaryO

Back on GH

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.

MaryO

Last I wrote, it was about all these glorious blogs I was creating.

 

A couple weeks ago *Poof* and they were all gone :spudnikheadstand:

 

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.

MaryO

Blogs Overload!

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

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

MaryO

One Turkey... Trotting!

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!)

 

turkeytrot06.jpg

MaryO

Catching up with the Cancer

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 :D

 

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:

 

First off, I'd like to thank you all for your good wishes, support and prayers. I could do the Sally Field thing and say "...and I can't deny the fact that you like me, right now, you like me!" but I won't smile.gif

 

I plan to print everything out and take it with me to the hospital as a cheery-upper.

 

Alice has been such a wonderful friend through all this, calling, checking up on me, keeping all of you updated on things as they are known right now. Her support and love has been such a wonderful blessing in my life, especially now.

 

As it is, I'm currently feeling "normal" whatever that is. If I didn't know I had a problem, I would think that I was just fine.

 

I am fortunate that I found this out before the tumor could grow any larger. I am fortunate that I was close to the ER, not driving home from Baltimore, or in Baltimore, Oklahoma or on the cruise.

 

I know that the tumor has been growing for quite a while - it's very large. I saw the MRI images and even I can tell that it's not normal. As far as I know now, all the other scans have been fine. I had an abdomen CT, chest CT, brain MRI, chest/abdomen MRI and a full body bone scan.

 

When I was in the ER Friday, they assumed that it was a kidney stone and did the first abdomenal CT scan looking to see where that was. They came back with the news that yes, I had a kidney stone but that it was the least of my worries at them moment. So, I was admitted to the hospital and had all the other scans except the bone scan. Knowing what I know now, it would have been better and easier for me to have had the bone scan as an inpatient. As soon as I checked out and was out of the system, it was harder to get an "emergency" (not scheduled weeks in advance) bone scan. Oh, well.

 

My surgery will be next Tuesday, May 9, at 9:30AM at Fairfax Hospital ( http://www.inova.org/inovapublic.srt/ifh/index.jsp ). I'm expected to stay there for 3-5 days post op and they don't anticipate any pesky complications like chemo or radiation at this time.

 

For now, I'm keeping my normal schedule, avoiding reading horror stories online, eating, sleeping - even napping! - as usual. Sometimes I even forget that I have this little medical appointment next week.

 

For a non-phone person I've talked with so many people these last few days, it's mind-boggling.

 

I'm happy to report that all is not lost on the cruise. Someone will replace me - and there will be another cruise later in the year. YEA! My main "concern" on that now is that I'll lose weight (finally!) post-op and my cruisewear will no longer fit. Yeah, right.

 

In thinking back, I think it's a good thing that my arginine test was messed up in Sept of 05. If it hadn't been, I wouldn't have redone it on Thursday. I believe that having that stuff in my body was what made my kidneys rebel and act up on Friday. So, without the lab screw-up I might not have known anything for a long time.

 

So, it's all good :)

 

Thanks to everyone who has called and posted such wonderful things. I cannot begin to imagine what my email looks like...

 

and

 

Jun3 12, 2006 post-op:

 

Thank you all for your prayers, good wishes, cards, phone calls, gifts, general "cheery-uppers". They all really helped me on my road to recovery.

 

I do have a ton of thank you cards to send out to lots of people - I'm very slow at that sad.gif Under normal circumstances my handwriting is terrible. Now, post-op kidney cancer, I can no longer take my arthritis meds or any NSAIDs and my writing will probably be even worse :D

 

I am very nearly better, not much pain anymore, a nasty big scar and my energy levels aren't so great. Of course, they were awful before. I can no longer take the GH even though I'm deficient. In 5 years (if I survive!) I can take the GH again, supposedly.

 

I've had a lot of time to do a lot of thinking over the last 6 weeks. I know I was extraordinarily lucky to have my tumor discovered before it was too late. The lab reports and my surgeon reported that it would only have been a week or so before the tumor had hemorrhaged and caused major problems. Thank goodness the argenine retest for GH had caused me to bleed - at least I think that's what set it off. If I hadn't had all the blood and pain for one day only, I'd have had no clue that I had this cancer and who knows what would have happened in that next week.

 

I will be getting CT scans every 3 months for awhile to be sure that there is no cancer hiding out.

 

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:

Update October 26, 2006

 

I went to see my Johns Hopkins endo again last week. He doesn't "think" that my cancer was caused by the growth hormone although it may well have encouraged the tumor to grow faster than it would have.

 

He was happy to see that I had lost 22 pounds since my last 6 month visit. Not all of that was from surgery! He reminded me that I can take more cortisone, but I hate to do that because I gain weight so fast when I take more.

 

He thought that my blood pressure was low - for me, not for "normal" people. He took my pressure several times, lying down, getting up quickly. But I never got dizzy. Maybe my pressure increase was temporary when the cancer started. All these mysteries I have that no one can answer.

 

My energy levels are lower than when I was on GH, and they're lower again because I had the adrenal removed, because of my panhypopit, because of my cancer (even though currently NED, it can come back at any time, because of my GH deficiency...

 

Every day is a challenge getting up, doing something useful, doing something without arthritic pain and weakness, having the energy to finish even something "easy". I'm starting to get very depressed over all this.

 

If this is the way the rest of my life is going to be, why bother?

 

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?

Guest

Feeling down and helpless

I'm feeling so down. My two special friends, Alice and Sue are both are going through some really tough times right now and I feel so helpless. There's nothing I can do to help either one and it makes me feel so bad. I like being a person who can cheer others up and it's just not working right now. Both are people I met online, neither lives close to me, so I can't just drop by and give out hugs, help with housework, shopping, whatever.I hate to call and be disruptive in case of much-needed naps, but I feel like I need to do something more than I am. I don't want to be in the way, but...I'm feeling guilty for not being sick myself - how stupid is that? Nothing of substance here, just someone who wishes that there was less pain and more joy in the world.This is all so depressing to me. The good news is that Alice seems to be getting better while Sue maybe isn't :(Feel better soon (((Alice))) and (((Sue))). I'm so worried about both of you.

Guest

Walking wounded

Sheesh, I feel like an invalid. My carpal tunnel is back with a vengeance, so I'm wearing the big braces again - look terrific in short sleeve shirts! It's also very hard to type, to do the computer, to do anything.Besides that, I got some kind of eye infection or something. At first, I thought it was something in my eye because only one quadrant was hurting and red, but it spread to the whole eyeball.It might be from the newest contact lens solution I bought. When I looked at the label, it had expired in March. I just bought it a couple weeks ago! Now I have to find the receipt and haul that back to the store.If it wasn't that, it was probably one of my piano students bringing me pinkeye. AARRGGHH!And I can't/won't/shouldn't wear my contacts with this infection, so besides the splint, the red, puffy eye and all, I look even worse than usual.Always something!

Guest

Copied From Christy :)

So, I copied this from Christy's Blog. I hope she forgives me!Of course, I did replace with my answers, not hers :)Replace answers with your own :)A is for age- Over the Hill!B is for booze- Black (or white) Russian C is for Career or major- Let's see how does that go...taxi, chef, maid, doctor, teacher, musician, web designer, SURVIVOR!D is for dad's name- Daddy to me, Grandpa to my son, was Frank to othersE is for essential items to bring on a trip - computer and peripherals!F is for favorite album at the moment- Brian Wilson's SmileH is for hometown- Born in Lewiston, Me, raised in Connecticut and Massachusetts, lived in Wisconsin, Virginia, Maryland...I is for instruments you play- piano, organ, violin, clarinet.J is for jam or jelly you like- pumpkin butter, lime curd (if that counts)K is for kid- only one. Son is an only child of an only child of an only childL is for living arrangement- buried in piles of musical instruments, papers and clothesM is for mom's name- Mom to me, Nana to my son, and Mary to everyone elseN is for the names of your friends- Alice, Sue, Chris, Mattilyn, everyone on the boards - too numerous to name!O is for overnight hospital stays- 2 nights when my son was born, although 1 I didn't sleep much!, one week at local hospital for testing, 6 weeks at NIH before Pituitary surgery; many weeks afterP is for phobia(s)- the obvious icky things slugs, snakes, bugs....and planesQ is for a quote you like- "To be alive, to be able to see, to walk,...it's all a miracle". Artur Rubinstein (1887-1982) Polish PianistR is for relationship that's lasted the longest- Tom and I will have been married 33 years in January, 2006S is for siblings- noneT is for tickets- Gonna see The Moody Blues on Saturday!!! WooHooU is for unique trait- love making online stuff do what I want it to.V is for Vegetable- Corn on the cob, broccoli, tomatoes, onions, salads, cukesW is for worst trait- too wimpyX is for x-rays you've had- CAT scans, x-rays, MRIs Most everything has been looked atY is for Yummies - Heath Bar Crunch ice cream, cherry pie, carrot cakeZ is for zodiac sign- Virgo :rolleyes:

Guest

Test

Darn! Looks like I need some new images for the blog on Skyscape: e_pub.gif, e_draft.gif, p_sendtb.gif, p_draft.gif and p_lock.gif

Guest

I Wish...

...I weren't so tired - a recurring theme in my blog entries. But I wish that I could live more, enjoy life more, be more "real" and I think I have to be less tired to accomplish all that.But what if I get less tired and find out that this is all that there is? Life is more than half over and there's nothing more for me, everything good that's supposed to happen already has. What a depressing thought.I'm not depressed right now, but these down-type feelings keep creeping into my thinking. Midlife crisis? Maybe. Maybe not. Maybe I've spent my life being too afraid to really live, to talk to people, to do things. I'm always looking around, seeing what other people think and changing my thinking to what I think would make them approve of me. It doesn't always work, and I usually feel like I've sold out somehow by not being me by honoring my own thoughts and wishes. Sometimes I don't even know which are really my own thoughts and which I've picked up along the line from others.Drat! A middle age wimp! I need to get a spine surgically implanted.

Guest

Tired

I'm afraid if I keep a record of this, I won't like what I see. I'm still tired from my trip. I wonder how long it will take to get back to "normal tired". If/when I get back, it will probably be time for something else that zaps my energy.Gotta start exercising, though. I got quite a bit in the airport, just walking and hauling luggage around.

Guest

So...

I'm about finished with the new boards, just in the nick of time. I wanted them done before Wisconsin, and it looks like the basics will be done before then!

Guest

Gallery

Wow, there were 259 pictures in the old gallery. Shame most everyone couldn't see them! Hopefully, that will work better on these new boards. Maybe someday I'll upload some of those 259 but right now I'm exhausted!

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