🦓 Day 24: Cushing’s Awareness Challenge 2019

Over the years, we went on several Windjammer Barefoot Cruises.  We liked them because they were small, casual and were fairly easy on the wallet.

They sailed around the Caribbean to a variety of islands, although they sometimes changed itineraries depending on weather, crew, whatever.  One trip we were supposed to go to Saba but couldn’t make port.  A lot of people got off at the next port and flew home.

The captains were prone to “Bedtime Stories” which were often more fiction than true but they added to the appeal of the trip.  We didn’t care if we missed islands or not – we were just there to sail over the waves and enjoy the ride.

The last trip we took with them was about two years before I started having Cushing’s problems.  (You wondered how I was going to tie this together, right?)

The cruise was uneventful, other than the usual mishaps like hitting docks, missing islands and so on.  Until it was a particularly rough sea one day.  I was walking somewhere on deck and suddenly a wave came up over the deck making it very slippery.  I fell and cracked the back of my head on the curved edge of a table in the dining area.  I had the next-to-the-worse headache I have ever had, the worst being after my pituitary surgery. At least after the surgery, I got some morphine.

We asked several doctors later if that hit could have contributed to my Cushing’s but doctors didn’t want to get involved in that at all.

The Windjammer folks didn’t fare much better, either. In October 1998, Hurricane Mitch was responsible for the loss of the s/v Fantome (the last one we were on).

All 31 crew members aboard perished; passengers and other crew members had earlier been offloaded in Belize.

The story was recorded in the book The Ship and the Storm: Hurricane Mitch and the Loss of the Fantome by Jim Carrier.  The ship, which was sailing in the center of the hurricane, experienced up to 50-foot (15 m) waves and over 100 mph (160 km/h) winds, causing the Fantome to founder off the coast of Honduras.

“In October 1998, the majestic schooner Fantome came face-to-face with one of the most savage storms in Atlantic history. The last days of the Fantome are reconstructed in vivid and heartbreaking detail through Jim Carrier’s extensive research and hundreds of personal interviews. What emerges is a story of courage, hubris, the agony of command, the weight of lives versus wealth, and the advances of science versus the terrible power and unpredictability of nature.”

This event was similar to the Perfect Storm in that the weather people were more interested in watching the hurricane change directions than they were in people who were dealing with its effects.

I read this book and I was really moved by the plight of those crew members.

I’ll never know if that hit on my head contributed to my Cushing’s but I have seen several people mention on the message boards that they had a traumatic head injury of some type in their earlier lives.

 

🦓 Day 23: Cushing’s Awareness Challenge 2019

 

Today’s Cushing’s Awareness Challenge post is about kidney cancer (renal cell carcinoma). You might wonder how in the world this is related to Cushing’s. I think it is, either directly or indirectly.

I alluded to this earlier ago when I said:

I finally started the Growth Hormone December 7, 2004.
Was the hassle and 3 year wait worth it?
Stay tuned for tomorrow, April 22, 2017 when all will be revealed.

So, as I said, I started Growth Hormone for my panhypopituitarism on December 7, 2004.  I took it for a while but never really felt any better, no more energy, no weight loss.  Sigh.

April 14, 2006, I went back to the endo and found out that the arginine test that was done in 2004 was done incorrectly. The directions were written unclearly and the test run incorrectly, not just for me but for everyone who had this test done there for a couple years. My endo discovered this when he was writing up a research paper and went to the lab to check on something.

So, I went off GH again for 2 weeks, then was retested. The “good news” was that the arginine test is only 90 minutes now instead of 3 hours.

Wow, what a nightmare my arginine retest started! I went back for that Thursday, April 27, 2006. Although the test was shorter, I got back to my hotel and just slept and slept. I was so glad that I hadn’t decided to go right home after the test.

Friday I felt fine and drove back home, no problem. I picked up my husband for a biopsy he was having and took him to an outpatient surgical center. While I was there waiting for the biopsy to be completed, I started noticing blood in my urine and major abdominal cramps.

There were signs all over that no cell phones were allowed so I sat in the restroom (I had to be in there a lot, anyway!) and I left messages for several of my doctors on what I should do. It was Friday afternoon and most of them were gone 😦  I finally decided to see my PCP after I got my husband home.

When Tom was done with his testing, his doctor took one look at me and asked if I wanted an ambulance. I said no, that I thought I could make it to the emergency room ok – Tom couldn’t drive because of the anesthetic they had given him. I barely made it to the ER and left the car with Tom to park. Tom’s doctor followed us to the ER and instantly became my new doctor.

They took me in pretty fast since I was in so much pain, and had the blood in my urine. At first, they thought it was a kidney stone. After a CT scan, my new doctor said that, yes, I had a kidney stone but it wasn’t the worst of my problems, that I had kidney cancer. Wow, what a surprise that was! I was admitted to that hospital, had more CT scans, MRIs, bone scans, they looked everywhere.

My new “instant doctor” felt that he wasn’t up to the challenge of my surgery, so he called in someone else.  My next new “instant doctor” came to see me in the ER in the middle of the night.  He patted my hand, like a loving grandfather might and said: “At least you won’t have to do chemotherapy”.  And I felt so reassured.

It wasn’t until later, much after my surgery, that I found out that there was no chemo yet that worked for my cancer.  I was so thankful for the way he told me.  I would have really freaked out if he’d said that nothing they had was strong enough!

My open radical nephrectomy was May 9, 2006 in another hospital from the one where the initial diagnosis was made. My surgeon felt that he needed a specialist from that hospital because he believed pre-op that my tumor had invaded into the vena cava because of its appearance on the various scans. Luckily, that was not the case.

My entire left kidney and the encapsulated cancer (10 pounds worth!) were removed, along with my left adrenal gland and some lymph nodes. Although the cancer (renal cell carcinoma AKA RCC) was very close to hemorrhaging, the surgeon believed he got it all.

He said I was so lucky. If the surgery had been delayed any longer, the outcome would have been much different. I repeated the CT scans every 3 months, just to be sure that there is no cancer hiding anywhere. As it turns out, I can never say I’m cured, just NED (no evidence of disease). This thing can recur at any time, anywhere in my body.

I credit the arginine re-test with somehow aggravating my kidneys and revealing this cancer. Before the test, I had no clue that there was any problem. The arginine test showed that my IGF is still low but due to the kidney cancer I couldn’t take my growth hormone for another 5 years – so the test was useless anyway, except to hasten this newest diagnosis.

So… either Growth Hormone helped my cancer grow or testing for it revealed a cancer I might not have learned about until later.

My five years are more than up now.  In about 3 weeks I will be 13 years free of this cancer!  My kidney surgeon *thinks* it would be ok to try the growth hormone again. My endo says maybe. I’m still a little leery about this, especially where I didn’t notice that much improvement.

The following is adapted from https://cushingsbios.com/2017/06/21/maryo-growth-hormone-update/

May 4, 2017 ~ My endo at Hopkins and I talked about maybe trying growth hormone again.  We tested my levels locally and – surprise – everything is low, again.

So, we started the insurance routine again.  My insurance rejected the growth hormone I took last time around.  I just love how someone, a non-doctor who doesn’t know me, can reject my person endocrinologist’s recommendation.  My endo who specializes in Growth Hormone, who runs clinical trials for Johns Hopkins on “Control of growth hormone secretion, genetic causes of growth hormone deficiency, consequences of growth hormone deficiency.”

That insurance person has the power over the highly trained physician.  Blows my mind.

But I digress.  My doctor has agreed to prescribe Omnitrope, the insurance-guy’s recommendation.

June 14, 2017 ~ I got a call from my insurance.  They “may” need more information from my doctor…and they need it in 72 hours.

My doctor’s nurse says that they have to refer this to their pharmacy.

June 15, 2017 ~ I got a call from the Omnitrope folks who said they will need approval from my insurance company <sigh> but they will send me a starter prescription of 30 days worth.

June 16, 2017 ~ I got a call from the Specialty Pharmacy.  They’re sending the first month supply on Tuesday.  Estimated co-pay is $535 a month.  I may have to rethink this whole thing 😦   We sure don’t have an extra $6000.00 a year, no matter how much better it might make me feel.

June 19, 2017 ~ The kit arrived with everything but the actual meds and sharps.

June 20, 2017 ~ The meds and sharps arrived along with the receipt.  My insurance paid nearly $600 – and they took my copay out of my credit card for $533.

I still have to wait for the nurse’s visit to use this, even though I’ve used it in the past.

I’ve been doing some serious thinking in the last 24 hours.  Even if I could afford $533 a month for this, should I spend this kind of money on something that may, or may not, help, that may, or may not, give me cancer again.  We could do a couple cruises a year for this much money.  I’ve pretty much decided that I shouldn’t continue, even though I haven’t taken the first dose of this round.

April 22, 2018 – I have been on the GH for nearly a year.  I don’t feel any better, any less tired, haven’t lost any weight.  The only change I notice is that I find myself more chatty, and I don’t like that.  I’m thinking of going off this again after I’ve given it a year.

April 23, 2019 – I have been on the GH for nearly two years.  I don’t feel any better, any less tired, haven’t lost any weight.  The only change I notice is that I find myself more chatty, and I don’t like that.  I’m thinking of going off this again since even the co-pay is so expensive.  Last summer, I accidentally got water in my GH cartridge.  From https://maryoblog.com/2018/07/06/cruise-to-bermuda-september-2017/

I had a huge growth hormone fail on this trip.  I packed it exactly like I did here, but there was no fridge in the hotel.  I’d planned on leaving it in Michael’s apartment but the first night we were tired and I left it in a container of ice.  Of course, the ice melted and got into the cartridge so I threw it away.  There was no GH for the entire cruise 😦.  

There were no ill-effects that I noticed.

I’m pretty sure that I’m not going to take it with me when we travel through Heathrow Airport again in September.

 

 

🦓 Day 22: Cushing’s Awareness Challenge 2019

 

 

 

I have seen this image several places online and it never ceases to crack me up. Sometimes, we really have strange things going on inside our bodies.

Usually, unlike Kermit, we ourselves know that something isn’t quite right, even before the doctors know. Keep in touch with your own body so you’ll know, even before the MRI.

I asked doctors for several years – PCP, gynecologist, neurologist, podiatrist – all said the now-famous refrain. “It’s too rare. You couldn’t have Cushing’s.” I kept persisting in my reading, making copies of library texts even when I didn’t understand them, keeping notes. I just knew that someone, somewhere would “discover” that I had Cushing’s.

Finally, someone did.

These days, there’s no excuse to keep you from learning all you can about what’s going on with you. There are your computer, books and the internet. Keep reading and learning all you can. You have a vested interest in what’s going on inside, not your doctor.

🦓 Day 21: Cushing’s Awareness Challenge 2019

Today’s post is an absolute must. Since I’m posting this on April 21, I have a built-in topic.

The image above is from our first local meeting, here in Northern VA – note the 6 Cushing St. sign behind us.  Natalie was the Cushie in the middle.

Today is the anniversary of Natalie’s death.

Last month was the anniversary of Sue’s death.

I wrote about Janice earlier.

It’s just not right that this disease has been known for so many years, yet doctors still drag their feet diagnosing it and getting people into remission.

Why is it that we have to suffer so much, so long, and still there are so many deaths from Cushing’s or related to Cushing’s symptoms?

I know far too many people, good people, who suffered for many years from this disease that doctors said they didn’t have.  Then they died.  It’s time this stopped!

Speaking of death – what a cheery blog post this is turning out to be.  NOT!  Unfortunately, this seems to be one of the realities of Cushing’s.

Tomorrow will be cheerier – watch for it!

This year, April 21 is also Easter which gives us hope for tomorrow and the future.

 

🦓 Day 20: Cushing’s Awareness Challenge 2019

 

This is a tough one.  Sometimes I’m in “why me” mode.  Why Cushing’s?  Why cancer?  Why knee pain that doesn’t let up?  Why my DH has ongoing health issues?  Unfortunately, there’s not a thing I can do about any of it.  Cushing’s, who knows the risk factors?  For kidney cancer I found out the risk factors and nearly none apply to me. So why? But why not?  No particular reason why I should be exempt from anything.

Since there’s nothing to be done with the exception of trying to do things that could harm my remaining kidney, I have to try to make the best of things.  This is my life.  It could be better but it could be way worse.

One of the Challenge topics was to write about “My Dream Day” so here’s mine…

I’d wake up on my own – no snooze alarms – at about 8 am, sun streaming through the window.  I’d be well rested and not have had any nightmares or death-dreams the night before.  I wouldn’t have had any issues sleeping due to my hernia.  I’d be able to hop out of bed without my knees hurting or giving way on me, or my tendonitis/deteriorating thumb join throbbing. I’d forget that my DH has cancer and that my mom broke her pelvis last year – in 2 places. I remember my son and his new wife are home for a visit but I let them sleep in for a while.

I’d get out for a bike ride or a brisk walk, come home, head for the hot tub then shower.  I’d practice the piano for a bit, then go out to lunch with friends, taking Michael with me.  While we’re out, the maid will come in and clean the house.

After lunch, maybe a little technology shopping/buying.  Then the group of us go to one of our homes for piano duets, trios, 2-piano music.

When we get home, it’s immaculately clean and I find that the Prize Patrol has visited and left a substantial check.

We would take Mimi for a long walk through the woods, where we would come across a Little Free Library so my Mom could check out the books.

I had wisely left something for dinner in the Instant Pot so dinner is ready.  After dinner, I check online and find no urgent email, no work that needs to be done, no bills that need to be paid, no blog challenge posts to write…

Then, I’d get a text from Alice

 

I wake up from My Dream Day and realize that this is so far from my real life, so I re-read The Best Day of My Life and am happy that I’m not dealing with anything worse.

 

 

🦓 Day 19: Cushing’s Awareness Challenge 2019

In case you haven’t guessed it, one of my causes seems to be Cushing’s Awareness.  I never really decided to devote a good portion of my life to Cushing’s, it just fell into my lap, so to speak – or my laptop.

I had been going along, raising our son, keeping the home-fires burning,  trying to forget all about Cushing’s.  My surgery had been a success, I was in remission, some of the symptoms were still with me but they were more of an annoyance than anything.

I started being a little active online, especially on AOL.  At this time, I started going through real-menopause, not the fake one I had gone through with Cushing’s.  Surprisingly, AOL had a group for Cushing’s people but it wasn’t very active.

What was active, though, was a group called Power Surge (as in I’m not having a hot flash, I’m having a Power Surge).  I became more and more active in that group, helping out where I could, posting a few links here and there.

Around this time I decided to go back to college to get a degree in computer programming but I also wanted a basic website for my piano studio.  I filled out a form on Power Surge to request a quote for building one.  I was very surprised when Power Surge founder/webmaster Alice (AKA Dearest) called me.  I was so nervous.  I’m not a good phone person under the best of circumstances and here she was, calling me!

I had to go to my computer class but I said I’d call when I got back.  Alice showed me how to do some basic web stuff and I was off.  As these things go, the O’Connor Music Studio page grew and grew…  And so did the friendship between Alice and me.  Alice turned out to be the sister I never had, most likely better than any sister I could have had.

In July of 2000, Alice and I were wondering why there weren’t many support groups online (OR off!) for Cushing’s. This thought percolated through my mind for a few hours and I realized that maybe this was my calling. Maybe I should be the one to start a network of support for other “Cushies” to help them empower themselves.

I wanted to educate others about the awful disease that took doctors years of my life to diagnose and treat – even after I gave them the information to diagnose me. I didn’t want anyone else to suffer for years like I did. I wanted doctors to pay more attention to Cushing’s disease.

The first website (http://www.cushings-help.com) went “live” July 21, 2000. It was just a single page of information. The message boards began September 30, 2000 with a simple message board which then led to a larger one, and a larger. Today, in 2018, we have over 12 thousand members. 12,818 to be exact.  Some “rare disease”!

This was on the intro page of Cushing’s Help until 2013…

I would like to give abundant thanks Alice Lotto Stamm, founder of Power Surge, premier site for midlife women, for giving me the idea to start this site, encouraging me to learn HTML and web design, giving us the use of our first spiffy chatroom, as well as giving me the confidence that I could do this. Alice has helped so many women with Power Surge. I hope that I can emulate her to a smaller degree with this site.

Thanks so much for all your help and support, Alice!

In August 2013 my dear friend died.  In typical fashion, I started another website

I look around the house and see things that remind me of Alice.  Gifts, printouts, silly stuff, memories, the entire AOL message boards on floppy disks…

Alice, I love you and will miss you always…

 

MaryOOneRose

🦓 Day 17: Cushing’s Awareness Challenge 2019

I used to carry a print out of this everywhere I go because I find it very soothing.  This print out was in a plastic page saver. On the other side there is a Psalm 116, part of the post from Day Fifteen of the 2018 Cushing’s Challenge.

These days, both these readings are available on my phone and iPad.

I first read this in Chicken Soup for the Surviving Soul and is posted several places online.

The Best Day Of My Life
by Gregory M Lousignont

Today, when I awoke, I suddenly realized that this is the best day of my life, ever! There were times when I wondered if I would make it to today; but I did! And because I did I’m going to celebrate!

Today, I’m going to celebrate what an unbelievable life I have had so far: the accomplishments, the many blessings, and, yes, even the hardships because they have served to make me stronger.

I will go through this day with my head held high, and a happy heart. I will marvel at God’s seemingly simple gifts: the morning dew, the sun, the clouds, the trees, the flowers, the birds. Today, none of these miraculous creations will escape my notice.

Today, I will share my excitement for life with other people. I’ll make someone smile. I’ll go out of my way to perform an unexpected act of kindness for someone I don’t even know.

Today, I’ll give a sincere compliment to someone who seems down. I’ll tell a child how special he is, and I’ll tell someone I love just how deeply I care for her and how much she means to me.

Today is the day I quit worrying about what I don’t have and start being grateful for all the wonderful things God has already given me.

I’ll remember that to worry is just a waste of time because my faith in God and his Divine Plan ensures everything will be just fine.

And tonight, before I go to bed, I’ll go outside and raise my eyes to the heavens. I will stand in awe at the beauty of the stars and the moon, and I will praise God for these magnificent treasures.

As the day ends and I lay my head down on my pillow, I will thank the Almighty for the best day of my life. And I will sleep the sleep of a contented child, excited with expectation because know tomorrow is going to be the best day of my life, ever!

 

When I’m feeling down, depressed or low, reading my 2 special pages can help me more than anything else.