Nov 22

Giving Thanks, Day 22

 

I am so thankful for all my doctors but today I am thankful for Dr. Amir Al-Juburi who saved my life by removing my kidney cancer (renal cell carcinoma).

 

In 2006 I picked up my husband for a biopsy 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. I left messages for several of my doctors on what I should do. 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 anaesthetic 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 became my new doctor.

 

When I was diagnosed in the ER with kidney cancer, Tom’s doctor said that he could do the surgery but that he would recommend someone even more experienced, Dr. Amir Al-Juburi.

 

Dr. Amir Al-Juburi has been so kind to me, almost like a kindly grandfather might be, and he got rid of all 10 pounds of my kidney and cancer.

 

I owe him, the original doctor, and my Cushing’s doctors (who will be featured later!), my life.

 

Nov 21

Giving Thanks, Day 21

 

Today, and every day, I am thankful for coffee. Without it, I would have a daily headache and I’d have even less energy than I have now.

 

I first started drinking coffee when I had my first job as a waitress at a Hayes-Bickford in Boston, MA. This was a summer job. A bunch of my college friends had gotten an apartment near Fenway Park in Boston and most of us were waitresses in various places.

Hayes-Bickford was marginally better than a dive.

I was fortunate that I was the youngest waitress at that Hayes-Bickford, so I got the best tips.

This was a l-o-n-g time ago – I’d get out of work sometime after midnight, take the Boston subway alone to our apartment, with an apron full of my tips, mostly in jangly change. That could never happen any more!

Even without the money, I still wouldn’t wander around the Boston Common area of Boston alone after midnight.

We were right around the corner from the “Combat Zone”.

According to Wikipedia “The Combat Zone was the name given in the 1960s to the adult entertainment district in downtown Boston, Massachusetts. Centered on Washington Street between Boylston Street and Kneeland Street, the area was once the site of many strip clubs, peep shows, X-rated movie theaters, and adult bookstores. It also had a reputation for crime, including prostitution.

I’m sure my parents would have had a fit if they’d known where I was working!

The food at HB wasn’t so great. Sometimes, a patron would order some type of meat and the chef would say we were out of it, to put gravy on whatever-we-had and tell the diner that it was what he had ordered. We were usually out of a lot of things.

But the coffee was good and I learned to drink it, lots of it, and black, something I still do today. If I could do the IV thing, I would!

 

 

Nov 20

Giving Thanks, Day 20

 

November 3  was the 36th anniversary of my pituitary surgery at NIH.

As one can imagine, it hasn’t been all happiness and light.  Most of my journey has been documented here and on the message boards – and elsewhere around the web.

My Cushing’s has been in remission for most of these 36 years.  Due to scarring from my pituitary surgery, I developed adrenal insufficiency.

I took growth hormone for a while.

When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two.  Until I was 10 years NED (no evidence of disease) from cancer, I still couldn’t go back on the GH but I’m back now.

During that surgery, doctors removed my left kidney, my adrenal gland, and some lymph nodes.  Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.

In the last year, I’ve developed ongoing knee issues.  Because of my cortisol use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee.

My mom has moved in with us, bring some challenges…

But, this is a post about Giving Thanks.  The series will be continued on this blog unless I give thanks about something else Cushing’s related 🙂

I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.

I am thankful for Dr. Ed Oldfield, my pituitary neurosurgeon at NIH.

I’m thankful for Dr. Harvey Cushing and all the work he did.  Otherwise, I might be the fat lady in Ringling Brothers now.

To be continued in the following days here at http://www.maryo.co/

Nov 19

Giving Thanks, Day 19

I am thankful, believe it or not, that I had Cushing’s. Mind you, I wouldn’t want to have it now, although diagnoses and surgeries seem “easier” now.

 

Having Cushing’s taught me a lot, including how to stick up for myself, how to read medical books to learn more about my disease, how to do web design, how to navigate NIH. It taught me patience, how to make phone calls. It brought me a lot of new friends.

 

I am also thankful that people are becoming more empowered and participating in their own diagnoses, testing and treatment. Things have changed a lot since my surgery November 3, 1987!

 

 

When I had my Cushing’s over 30 years ago, I never thought that I would meet another Cushing’s patient in real life or online. Back then, I’d never even been aware that there was anything like an “online”. I’m so glad that people struggling with Cushing’s today don’t have to suffer anymore thinking that they’re the only one who deals with this.

 

Because of my work on the websites – and, believe me it is a ton of work! – I have had the honor of meeting hundreds of other Cushies personally at local meetings, conferences, at NIH (the National Institutes of Health in Bethesda, MD where I had my final diagnosis and surgery). It occurred to me once that this is probably more Cushies than most endocrinologists will ever see in their entire career. I’ve also talked to countless others on the phone. Amazing for a “rare” disease!

 

I don’t know what pushed me in 1983 when I first noticed I was sick, how I got the confidence and self-empowerment to challenge these doctors and their non-diagnoses over the years. I’m thankful that I didn’t suffer any longer than I did and I’m glad that I have a role in helping others to find the medical help that they need.

 

Nov 18

Giving Thanks, Day 18

 

I actually posted this one in 2017~

Today I am thankful that the skunk already passed by when I took Mimi out for a walk a couple days ago!

It’s so not fair! I can’t smell lots of flowers or perfumes but I can smell a skunk blocks away.

 

 

 

 

 

Nov 17

Giving Thanks, Day 17

ocms-logo

 

Today, since it’s a “teaching day”, I’m thankful for my piano studio, my students, and my piano 🙂

 

When I was growing up, my dad was a minister, meaning we lived in whatever parsonage the church chose to let us live in.  The one we had in Pawcatuck, CT had an upright piano that someone had put out in the sunroom.  Not the best place for a piano, but I digress.

Since we had the piano already, someone – probably my mom – decided that I would take lessons.  We had the organist from the Baptist church just across the river in Westerly, RI

Apparently, Clara Pashley was fondly remembered at the church (now Central Baptist Church) since she was mentioned in an article from 2010.

 

screenshot-2016-11-04-10-04-33
25-centsMiss Pashley walked to our house each week and taught me (and my mom who was always listening in) piano for the grand sum of 25 cents.

I started with Ada Richter’s classic Teaching Little Fingers to Play, which has now been morphed into the John Thompson library.

From there, it was the Michael Aaron series, and some sheet music.

There was no music store in our town, so I have no idea where any of this music came from – but I still have it all.

My parents did very well for their quarter a week investment, especially since my mom paid good attention and was able to beef up lessons she’d had as a child.  Later on, she played well enough that she was church organist for a local Roman Catholic Church.

But I digress…

In those days, kids couldn’t do a whole lot of activities, so in 6th grade, I decided I wanted to be a Girl Scout.  Bye, bye Clara.

Girl Scouts didn’t last long but I did play piano in a talent show.  I remember, I carefully cut Burgmüller’s Ballade out of my Michael Aaron book and made a nice construction paper cover.  (I still have this, too)

balladeburgmuller

 

I doubt that I played this well but here’s what it was supposed to sound like:

 

A few years intervened and moved to Springfield, MA.  The parsonage piano there was in terrible shape and in the dark, never-used basement.  But I decided to make it mine and cleared up the area around it and started “practicing”.

My Junior or Senior year of High School I decided I wanted to major in music in college.  I decided to learn, on my own, a piano arrangement of Aragonnaise by Jules Massenet.  I have no idea why or where that sheet music came from but I started working furiously on this piece.

aragonnaise

Hopefully, at some point, it should have sounded like this:

 

 

I started pedaling (no pun intended!) my music to the Universities of Connecticut and Massachusetts and ended up at UMass Amherst since we were state residents.

Early morning gym classes (usually swimming), then wet hair traipsing across campus to music theory in winter 5 days a week.  AARRGGH!

But I stuck it out.

My wonderful piano teacher, Howard Lebow, was killed in a car accident my sophomore year and I was devastated.  There will be more about him in a post on January 26, 2017 over on https://oconnormusicstudio.com

I took yet another break from piano lessons – but I kept playing.

After DH graduated, we moved to Milwaukee, WI for his graduate school.  Besides working 2 jobs, I found time to commandeer the practice rooms at the University of Wisconsin.  I also found a teacher at the Schaum School of Music.  She was amazed that I had no piano at home to practice on.

When we later moved to Alexandria, VA my DH gave me a choice of new car or piano. So, I found a used piano.  The owner had acquired it in a divorce and wanted it gone.  Yesterday.  She even paid to move it out of her apartment.

The new-to-me piano took up half our living room.  When my parents came to visit, their feet we under my piano as I slept.

I found yet another new piano teacher and she is still my best friend to this day.

That piano moved to several locations before I bought a brand new Yamaha grand piano.  The movers accidently brought in the wrong one and I made them return it.  The people who lived in an apartment were probably unhappy when they had to return my piano and take their own new baby grand back.

I started teaching as a traveling piano teacher in Silver Spring, Maryland.  I continued that in Wilmington, DE.

When we got to Fairfax, VA I decided no more traveling.  Students would come to me.  And so they have since 1973.

What is supposed to be our living room is filled with music books, electric keyboards, the grand piano, 2 organs, 2 violins, 2 clarinets and other musical “stuff”.

Piano playing has gotten me through the worst times of my life.  Teaching has been a lifeline for me, as well.

I am so thankful for the students who have stayed with me over the years.

 

Nov 16

Giving Thanks, Day 16

Adapted from https://cushieblog.com/2010/11/22/40-days-of-thankfulness-days-thirty-one-to-thirty-five/

 

Today is the fifteenth anniversary of my one and only zipline experience.
I had been thinking about doing this since my kidney cancer surgery 3 years earlier.  I figured I had “extra years” and I wanted to do something kinda scary, yet fun. So, somehow, I decided on ziplining.

All the following is I wrote then:

Day Four, November 18, 2009: Belize City, Honduras

Today’s Schedule!

Up and at ‘em early this morning.

This is finally the zipline day I’ve been thinking about since my kidney cancer surgery 3 years ago. Since then, I figure I have “extra years” and I wanted to do something kinda scary, yet fun. So, somehow, I decided on ziplining. Tom wouldn’t go with me but Michael would so I set this up almost as soon as we booked this cruise.

Our tour left first so after breakfast, Michael and I got on the tender for Belize. Tom’s tender was about 45 minutes later. Even though the tender went zipping along, it was about 20 minutes to shore.

We got on our bus with about 30 other brave and not-so-brave folks and our guide, Eddie, told us a bit about Belize City, Belize in general and what to expect on our tour.

Belize City used to be the capital of British Honduras (as Belize was formerly named) but it’s 2 feet below sea level and prone to hurricanes so the capital was moved to the other city – Belmopan in 1970. It was almost entirely destroyed in 1961 when Hurricane Hattie swept ashore on October 31.

Because of the altitude, graves are all above ground.

The main languages are English (the official language), Spanish and Kriol. Eddie said the kids learned English in school but, as soon as they were out, it was back to the Kriol. They wear uniforms to school.

Bordering on Mexico, Guatemala and the Caribbean, Belize is the second smallest country in Central America (after El Salvador), with an area of approximately 9,000 square miles that includes numerous small islands off the coast known as cayes.

More than half of the mainland is covered with dense forests, and at its longest point Belize is 174 miles long while its greatest width is 68 miles. Long a strong advocate of environmental protection, the government has set aside approximately 20% of its land as nature reserves.

There are also several important Mayan sites situated on the mainland such as Altun Ha and Xunantunich that make for excellent day trips and are included on shore excursions by most cruise ships. As a matter of fact, Belize has the highest concentration of Mayan sites of all the countries in Central America.

Eddie tried to tell us that our tour would be scary – but FUN, it would be hard – but FUN. He himself had done the zipline only once, because he had to for this job. He said that the caves might have things brushing up against us but they would be leaves and twigs. The caves might have “log-gators” in them, too.

We travelled along the 37-mile drive along the Western Highway – the scenery changed from city to suburbs, to a settlement called Hattieville where hurricane survivors met to life after the country was destroyed, to the beginnings of the rain forest.

We turned down a road to a jaguar preserve – yes, they have them here! then, finally, to our destination, Caves Branch National Park.

Eddie handed out water (which we had to leave on the bus). A bathroom break, then off to the zipline area.

Each person had a harness around their legs with attached pulleys and carabiners. Women had them on their chests as well. In addition, we had leather construction gloves and hard hats.

We climbed to the top of the first platform and were given brief instructions and off we went. Because of the heavy gloves, I couldn’t get any pictures. I had thought that they would take some of us on the hardest line to sell to us later but they didn’t. They also didn’t have cave pictures or T-Shirts. What a missed opportunity!

This was so cool, so much fun. I thought I might be afraid at first but I wasn’t. I just followed instructions and went.

Sometimes they told us to break. We did that with the right hand, which was always on the upper cable.

After the second line, I must have braked too soon because I stopped before I got to the platform. Michael was headed toward me. The guide on the end of the platform wanted me to do some hand over hand maneuver but I couldn’t figure out what he was saying so he came and got me by wrapping his legs around me and pulling me to the platform.

After that, no more problems with braking!

The next platform was very high – over 70 feet in the air – and the climb up was difficult. It was very hot and the rocks were very uneven. I don’t know that I would have gotten to the next platform if Michael hadn’t cheered me on all the way.

We zipped down the next six lines up to 250-feet between platforms and 85-feet high in the trees, at canopy level. It seemed like it was all over too soon.

But, I did it! No fear, just fun.

Here we are, after getting our gear off. The people behind Michael are just starting out on their zipline adventure. I thought maybe we could go again…?

Next stop was lunch in the trees. It was a buffet similar to those in Barbados – a jerk chicken (Eddie had said it would taste like chicken – might be egret, road kill, log-gator or even…chicken!), peas and rice, a pasta salad, cake, fruit salad, the usual fare.

Next up, cave tubing! This is the event I got my new waterproof camera for. Thanks again, Alice!

 

If you’re interested in reading the cave tubing part, it’s here: http://www.cushingsonline.com/cruise/cruise2009.htm

Nov 15

Giving Thanks, Day 15

Right now, I’ll give thanks when the Roto-Rooter guy finally arrives.

 

 

 

 

Nov 14

Giving Thanks, Day 14

 

TiVo. I love that I can fast forward through commercials and have all my favorite shows waiting for me when I lie down on the sofa (and fall asleep!)

I probably wouldn’t have gotten one of these when we did but our son got us one for Christmas many years ago. He had it all set up and ready to go on Christmas morning.

At that time, I had no idea of its capabilities but now, I don’t think I could live without it!

Nov 13

Giving Thanks, Day 13

A Golden Oldie –    In 2017, i was sure grateful that my Growth Hormone finally arrived (L-o-n-g saga to follow)

 

 

Wednesday, October 25, 2017, 11:08 PM on Facebook

Me: My $450 monthly co-pay refrigerated medication was overnighted to me yesterday, arrived a couple miles from my house at 7:05 this morning. UPS couldn’t get it to me today so they’ll “deliver it tomorrow between 12:30-4:00” .If that ice is melted, the medication is ruined. I see angry phone calls tomorrow.

 

Friend 1: My Specialty pharmacy replaces it free of charge if that happens. Or at least that’s what they tell me will happen. I asked because our UPS driver is terrible.

 

Me: We’re on the phone with the pharmacy right now.

 

Friend 2: OMG, you have one of those copays too?
😡 (Part D? So you have the same donut hole joy we do in Jan/Feb?)
I hope the pharmacy replaces/handles it. “At least” it’s tracked, so clearly documented as being en route for too many hours.

 

Me: Yup. People not on Medicare can get this close to free.
🙁
Still on the phone.
🙁 I hate this, ummm, stuff.

 

Friend 2: Ditto. The drug companies can give it for $25/copay with private insurance, and some f’d up anti-kickback statute prevents them from doing the same for anyone on federal insurance, including Medicare, even when it’s under patent or otherwise has no

generic (which is the point of the damn statute). 😡

The drug companies HAD (in our case, until this year) worked around it by funding independent patient copay programs to avoid the bad PR/increased regulation risks from being like Gleevec a decade ago (let’s bankrupt the cancer patients for whom this works and keeps them in remission indefinitely!), but at least with the myeloma oral chemos they’ve pulled their funding and the copay assistance programs have shut down, AND they’re raising the prices 20% (in the US, not countries that can legally, oh, bargain with pharm companies) to cover other drug failures. (I’m sure they’re hardly turning any profit at all, though, and the combined actions are totally 100% necessary. And I’m someone who *wants them* to turn a good profit so they’re incentivized, but come on. It’s absurd that the $$$ drugs that are a quick sub-q injections in an office building is fully covered by Part B and supplemental, whereas the “patient convenient” pills cost one $13k or so annually in copays.

 

Friend 2: But aside from my thread jacking rant (😳), I really hope you’re a) not entirely out right now, and b) it’s resolved at no additional cost to you or having to stay home again all day to sign for delivery.
😞

Me: We’re still on the phone
🙁 This is the 4th person.
This person on the phone can’t guarantee that it will be still cold but is hesitant to send another shipment at no cost

Friend 2:
🙄 Will they send at no cost if it arrives ruined? Like, you can have a time stamped photo and video of melted ice, and the tracking info with a delivery time stamp?
😕
It should really come out of their insurance or likely-contract with UPS.

Me: Don’t know yet but they’ve added a 5th person on the line. This can’t be the first time UPS messed up a temperature-sensitive medicine.
Now they’re going to call back in the morning. (HAHA)
🤣

Friend 2: I *constantly* want an eyeroll reaction button on FB. Good luck, and as long as you don’t run out before it comes I do have faith that you’ll end up not-screwed! (It’s just going to cost you time and frustration vs a second $450.)

 

Me: Still on the phone. This is nuts. I have 1 more cartridge (about 15 days worth)

Friend 2:
👍🏽 to enough on-hand,
🙄
🙄
🙄 to the phone mess?

Me: Phone call is over, nothing resolved. 5 reps, a couple robots and background music.To be continued in the morning…

 

Friend 3: I had that happen but it would have made it 3 days. I told them the cost and how long it could be in shipping. If they were to do as planned, it would be on them. They got a courier and I got it that night.

 

Friend 4: I would report it to whom ever you get the medication from . When I was getting a refrigerated medication they would never send them to arrive on a Sat.or around the holidays. They always made sure I got it next day Shipment !

 

Me: Mine is marked “next day” and they ship it by UPS Next Day Air Saver®

 

Me: I guess they saved the money but the Next Day got lost somewhere.

 

Friend 5: UPS explained to me that when the package is labeled “Air Saver” UPS can deliver the package anytime that day. If the package is labeled just Next Day Air, they have to deliver it in the morning. The problem is that the RXplan won’t pay the additional amount required by omitting the air saver.

 

Friend 6: Praying you get this mess resolved!!!

 

Me: Thanks!

Friend 7: This is what shipping insurance is for; it’s between the pharmacy and the shipper. ETA: only stable up to 24 hrs at room temp.

 

Me: Mine is only supposed to be between 2° to 8°C (36° to 46°F)

Friend 7: and starts losing potency quickly if not. Me: I know
🙁

 

Friend 5: Mary, I had the same problem on a day Texas temperature was 104 degrees. UPS delivered my GH the correct day but after 7 pm. The medication was warm when it arrived. My specialty pharmacy gave me a hard time about it. I phoned the manufacturer and talked to a nurse on the support team who said the med needed to be replaced and to have the pharmacy contact her if needed. I called the pharmacy and argued with the pharmacist for 15 minutes. I asked him if he wanted to be responsible for my taking a medication that wasn’t safe. He finally agreed to replace it. The box with my med was only half covered by the cold packs, and the tracker didn’t show damage, so the pharmacy argued about replacement. I responded with the fact that those trackers are not always accurate. They can and do fail. If he had continued to argue, I would have insisted he talk to the nurse with whom I spoke.I called my insurance plan and complained about the pharmacy. If you call the manufacturer of your med, be sure to get the name of your contact there. Good luck. I’m sorry you have that hassle.

Friend 8: So sorry!! Hope it gets to you in good, COLD condition. What an aggravation for you.

 

Friend 9: Refuse it… they replace it

 

Me: This doesn’t require a signature so they usually just drop it and run. Luckily, we have a dog who will sound the alarm.

 

Friend 9: Oh and Ask for fedex delivery all of the time

 

Me: 4:31 PM. The “window” today was 12-4:30. It’s still not here and back on the phone.

 

Me: I forget to mention that it’s going to take 8 days to track this package. Egads!

 

Me: I had to leave. Tom sent me a text “Donna from last night Called at 5pm I told her we were now considering replacing Humana.They are declaring the package lost and sending a replacement shipment immediately.It will arrive by 10:30 am Friday”. We’ll see! Several hours of phone calls and 15 people on their side. Aarrgghh

 

Friend 2: I will say that FedEx has been really consistent with ours (which ironically would basically be fine if lost for a few days, aside from extreme temperature ranges), though the whole designated “morning” and “afternoon” windows are a joke. (“Afternoon” has come before 8 am, “morning” at 3:30pm…but always the correct day! Just irritating since it’s so regulated – next-gen thalidomide, all those birth defects – it *has* to be signed for.) In case they’ll let you request FedEx after this.
🙄

 

Me: Today’s meds are coming UPS again but it shows as “Out for Delivery” today. Then, again, it said that on Wednesday, too. The difference is today has to be signed for and it’s supposed to be here by 10:30 so I can take my mom to a birthday lunch.
1 hour, 15 minutes and counting…

 

Me: Success!

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