Cancer

❓Can You Help?

MaryO Can You Help? , , , , , , ,

I’m on my second round of GH (I had to stop the first time due to cancer). I’ve been on Omnitrope since 2006 and the threads inside my pen must have worn down – I’m having a lot of trouble injecting it now.

I insert the needle and have to balance on the edge of the countertop in the bathroom and sort of lean in. Has anyone else had to replace the pen? I told my insurance company who sends the actual drug and they said “not us”. I don’t know if my endo has to prescribe another “starter kit” or what.

I did find a website that will sell me a new one for $200 but I’d rather not buy one that way. I found nothing on the Novartis website about this, either :(

Anyone?

Please respond here or on the message boards.

Thanks!

Basics: Diagnostic Procedures in Suspected Adrenocortical Carcinoma

MaryO Basic Info , , ,

Patients with suspected adrenocortical carcinoma (ACC) may also undergo additional tests to identify excess sex steroids and steroid precursors, mineralocorticoids and glucocorticoids.

Table 2 provides a summary of the tests recommended by the European Society of Endocrinology in collaboration with the European Network for the Study of Adrenal Tumors in patients with suspected ACC.10

Table 2. Diagnostic work-up in patients with suspected or proven adrenocortical carcinoma. Reproduced from Fassnacht et al., 2018,10 with permission under a Creative Commons Attribution 4.0 International License.
ACTH: adrenocorticotropic hormone; DHEA-S: dehydroepiandrosterone sulphate; CT: computed tomography; FDG-PET: 18F-fluorodeoxyglucose positron emission tomography; MRI: magnetic resonance imaging.
  • Click image to enlarge

Adrenal Insufficiency

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💡 Did you know some people live without adrenal glands at all?
This can happen due to:
🔹 Surgery – for tumors like pheochromocytoma or Cushing’s
🔹 Metastatic cancer – when cancer spreads to both adrenal glands
🔹 Bleeding into the glands, infections like TB
🔹 Or genetic conditions (like CAH) where glands are non-functional
🧬 In all these cases, the result is the same:
➡️ No cortisol. No aldosterone. No hormone backup.
This is called absolute adrenal insufficiency.
📌 When you have no adrenal glands, your body relies 100% on replacement therapy. There’s zero margin for error – even a delayed dose or skipped salt can lead to crisis.
👉 That’s why we made today’s image – with everything you NEED to know if you (or someone you love) is living without adrenal glands.
💙 Save it. Share it. Advocate.

✍️ TikTok Saved My Life: Student Discovers Life-threatening Tumour After Self-diagnosing Rare Condition

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Didn’t we all do this?

A young woman saved her own life after successfully self-diagnosing cancer/Cushing’s that doctors had missed because she researched her own worrying symptoms on TikTok.

Cleo Lambert, from Tring in Hertfordshire, had been unknowingly living with a cancerous tumour growing behind her liver for years.

Her life started to fall apart two-and-a-half years ago when her GP was unable to provide answers to the painful symptoms she was suffering.

However, this all changed when the prospective fashion student undertook a TikTok scrolling session in the summer of 2024 and noticed a post which told her she may have a rare condition called Cushing’s Syndrome.

The 21-year-old undertook a TikTok scrolling session in the summer of 2024 and noticed a post which told her she may have a rare condition called Cushing’s syndrome.

Her findings prompted doctors to order an X-ray, which revealed a 17cm cancerous mass had been growing inside the 21-year-old.

It was surgically removed and she immediately began life-saving chemotherapy.

Due to the size of the growth, medics told her that without the operation that year, she would not have survived.

Cleo’s findings prompted doctors to order an X-ray, which revealed a 17cm cancerous mass had been growing inside her.

“Doctors told me the tumours are ‘usually between 3-4cm, 5cm is more serious.'”, she told the Female Lead.

“They told me that mine had likely been growing for years and there was a chance it could even be cancerous.”

“A doctor also told me I’d probably saved a year of time based on how long a Cushing’s diagnosis could typically take. I think if I’d waited another year, with the size the tumour already was, I’d be dead.”

In the two-and-a-half years prior, Cleo had suffered from painful bouts of bloating after eating and had been putting on weight.

Cleo was seeing her usually thick locks of hair thinning at a rapid rate.

GPs initially told her she had polycystic ovary syndrome, a common hormonal disorder affecting women that was not curable but manageable through lifestyle choices.

But Cleo’s health continued to decline further and new symptoms – such as irregular periods, exhaustion and unexplained bruising – left her unable to leave her own house.

Desperate to find out what was wrong with her, Cleo managed to get a endocrinologist appointment booked in, but had 12 weeks to wait until she saw them.

It was during that period that Cleo undertook some research on the social media platform and found she had Cushing’s Syndrome – a rare condition caused by prolonged exposure to the stress hormone cortisol in the body.

“I saw a video that said: ‘Do you have these symptoms?’ and it listed extra weight around the stomach, a puffy face, exhaustion, hair loss, excessive hair growth in unusual places. I was reading a checklist of my life,” Cleo told the Female Lead.

“In the comments, people mentioned something called Cushing’s syndrome. I Googled it and immediately knew: this was me.”

Cleo ended up going down a “researching rabbit hole” into a “corner of health” she had never heard of before.

Armed with a mountain of research, Cleo went to her appointment in July 2024 and presented her theory, which the doctor agreed with.

Tests showed her cortisol levels were absurdly high, measuring at 1,334 nmol/l on one measure, where the normal level is around 135 nmol/l.

But more shockingly, X-rays revealed that Cleo had a 17cm tumour, the size of an aubergine, pushing up against her stomach and growing into her liver.

Cleo’s symptoms first started appearing after she returned home from travelling around Australia in the summer of 2022.

Despite being a regular gym goer and healthy eater, she was gaining weight easily and seeing her usually thick locks of hair become a lot thinner.

After being told she had PCOS, Cleo started to make changes to her lifestyle to see it it would help.

“I blamed the contraceptive pill and stopped taking it, but nothing changed,” She said.

“The doctors told me I had PCOS which I could manage it with diet and lifestyle changes. I cut out coffee, reduced carbs, stuck to low-impact exercise.”

But Cleo’s symptoms only got worse and things started to spiral in February 2024.

“My periods were irregular, I felt exhausted all the time, and I was getting strange new symptoms,” she said.

“I was getting nosebleeds, unexplained bruising, stretch marks spread across my body, appearing even from stretching after workouts.”

Alarm bells began to sound even louder when Cleo’s freshly inked tattoo left her arm with bruising on it for weeks, something which had never happened before.

She had been hoping to start university that summer, but her rapid health decline had left her not wanting to leave the house.

“The most frustrating part was not having any answers,” she said.

“No one said I looked different except my older sister, and I appreciated her honesty.

“I was desperate for answers. I felt like I was in someone else’s body and I knew there was something wrong, but felt helpless not understanding what it was.”

But thanks to her TikTok diagnosis, Cleo’s chemo treatment finishes this month and she is hopeful of going on holiday this summer and potentially go to university this September, a year later than planned.

As well as being grateful to the helpful content regarding her symptoms, Cleo also praised TikTok for enabling her to connect with other young woman and girls who were suffering from Cushing’s Syndrome.

“TikTok has played another role in my health journey. It helped me connect with a girl who’d been through almost the exact same thing – first misdiagnosed with PCOS, then later discovering she had Cushing’s too.

“Finding people my age going through similar experiences has been incredibly reassuring.

“While the UK’s National Health Service website is helpful, nothing compares to hearing real stories from creators on TikTok who are living it.

“I’d often reach out to them directly with specific questions, and those conversations gave me reassurance that medical information alone couldn’t.

“If you’d told me everything I was about to go through, I would’ve shit myself. But going from diagnosis to operation in two months meant there was no time to overthink, which was a weird kind of blessing.

“So, if you think something is wrong, trust your gut. You know what is normal for you. Keep pushing for answers. And keep scrolling on TikTok.”

For photos see: https://www.lbc.co.uk/news/health/tiktok-saved-my-life-student-life-threatening-tumour/

🦓 Day 29, Cushing’s Awareness Challenge

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invisible

 

I’ve been thinking about this since the article I posted on doctors not understanding what it was like for a post-op Cushing’s disease patient – ME!  I’m updating this for Cushings Awareness Month 2025.

I originally posted this on Facebook way back in 2010.

Edits from November 21, 2015 are in blue italic
Edits from September 25, 2023 are in red italic
Edits from February 29, 2024 are in green italic
Edits from April 2025 are in purple italic

November 21, 2010 at 6:31pm

I really liked Jessica’s list, so I decided to make one of my own.  I was looking in my blog for what I wrote already about Psalm 116 and found out that I already did a very similar list in September 2009.  Talk about bad memory!

30 Things About My Invisible Illness You May Not Know

1. The illnesses I live with are: Cushing’s Disease and kidney cancer (renal cell carcinoma). I also have secondary adrenal insufficiency as well as a growth hormone deficiency. I had pituitary surgery on November 3, 1987 and had my kidney cancer (kidney and adrenal gland) removed May 9, 2006.  Having my adrenal gland removed acerbates my post-op pituitary issues. My one remaining adrenal gland doesn’t work well and I cannot replace my deficient growth hormone because I had cancer.

November 21, 2015:  I haven’t added anything much to this list – HOORAY!  OTOH, nothing has gone away, either.  

A couple days/nights a month, I have unexplained, random itching.  It could be on my foot, then jump to my stomach, then anywhere. It keeps me awake at night and is very annoying.  I originally had this in menopause and I’m very annoyed that it has come back.

I mentioned this to my endo last year because of the possibility of “hormone withdrawal” and he said I should probably talk to my PCP about this, and that it could be “serious”.  I haven’t yet because I don’t like the possibility of tracking down some other dread, unknown disease.  According to that great doctor, Wikipedia: 

Causes of formication include normal states such as onset of menopause (i.e. hormone withdrawal). Other causes are medical conditions such as pesticide exposure, mercury poisoning, diabetic neuropathy, skin cancer, syphilis, Lyme disease or herpes zoster (shingles). Formication can also be a result of stimulant intoxication (e.g. methamphetamines, cocaine) or alcohol withdrawal in alcoholics (i.e. delirium tremens), and is often accompanied by visual hallucinations of insects.

Also, I’ve been having terrible swelling, and pain in my left ring finger.  I will see my PCP about that on Wednesday after having this for about 8 months or so.  I looked up the possibilities on Dr. Google and there are too many to contemplate.  I hope it’s not arthritis.  I already know I can’t take meds for that.

September 25, 2023 – I’m able to take growth hormone injections – Omnitrope – again but I don’t see it making any difference.

In March of 2023 I had a total left knee replacement after many steroid injections and one series of hyaluronic acid.  I documented all that in another of my blogs. I am expecting to do the right knee possibly in the fall of 2024 but I’m putting it off as long as possible.

February 3, 2025 I had a total right knee replacement.  It was “easier than the left but I developed an allergy to something which is yet unknown and I had a terrible itch rash for about a month.

2. I was diagnosed with Cushing’s in the year: 1985; adrenal insufficiency in 1999; GH deficiency in 2004 and kidney cancer in 2006.

November 21, 2015:  Somehow, I forgot that I was diagnosed with osteoarthritis in the early 1980’s and took NSAIDs for about 30 years.  Those are another kidney cancer no-no.

In April of 2021 I had a Mohs Surgery for Squamous Cell Carcinoma.  A description and photos are available here: https://maryomedical.com/2021/05/09/the-mohs-nose/

 

3. But I had Cushing’s symptoms since: 1983 for sure.  Looking back, I can trace some other symptoms to the 1970s.

 

4. The biggest adjustment I’ve had to make is: Sleeping so much.  When I say I have to sleep, that’s it, no matter where I am, no matter what I’m doing.  From the cancer – not being able to take my arthritis meds.

 

5. Most people assume: I am completely healthy.  I had surgery, so everything is fine.  I am, however, lazy.

 

6. The hardest part about mornings are: getting up.  I could sleep until at least noon if I didn’t have an alarm AND something specific to do.  It’s also hard to get my joints so they work.  Sometimes I have a hard time standing.  I have a footed cane beside the bed to help me get up.

November 21, 2015:  I seem to be getting up earlier.  I have an issue with a joint on my ring finger, left hand.  It often throbs at night and wakes me up.

2023-2024, I seem to be waking up about 1 or so.  I guess because my 2-3 hour naps, my body is treating bedtime as just another nap.

2024-2025. I’m waking up about 3 and doing some online work, then napping for about 30 minutes to an hour until my alarm goes off at 9

7. My favorite medical TV show is: House.  I started watching it because an episode about Cushing’s was loosely based on a Cushie I know.

November 21, 2015:  House doesn’t seem to be on anymore so I no longer have a favorite medical TV show.

 

8. A gadget I couldn’t live without is: Wow, so many. My iPhone is the main one with a few others very close.

November 21, 2015:  iPad now.

 

9. The hardest part about nights are: Staying asleep.  I’m always tired but I often have to get up to go the the bathroom.  Then, I often have trouble getting back to sleep.

November 21, 2015:  Dreams, some scary, some that just play like endless loops until I get up.  I still get up for the bathroom, too. Pain, sometimes that itching. 

 

10. Each day I take __ pills & vitamins: Not much.  I only take Cortef and lisinopril/HCTZ.  I used to take a lot of other meds but, due to having only one kidney, I can’t take much of anything, including vitamin C, aspirin and NSAIDs.  I pray I don’t get headaches anymore!

November 21, 2015:  Nowadays, it’s only the Cortef.
If absolutely necessary, I take Alavert for allergies and Benadryl if I’m in an itchy pattern; Tylenol for headaches.  

Because of the cancer, I can’t take Growth Hormone any more.

September 25, 2023 – I’m able to take growth hormone injections – Omnitrope – again but I don’t see it making any difference.

 

11. Regarding alternative treatments I: have to clear anything I take or do with my kidney cancer surgeon so it’s easier to just not take anything.

 

12. If I had to choose between an invisible illness or visible I would choose: What I have.  While I wish people would understand better, I don’t want anyone to feel pity or single me out.

 

13. Regarding working and career: I’ve been fortunate – I’ve been a piano teacher forever and I can control my hours to get in naps when I need them.  I could not work a 40-hour job.

November 21, 2015:  I still teach piano, although it’s hard to play now due to that joint issue.  I also am webmaster for my church, for my husband’s company and the Cushing’s sites.  I also inherited my friend’s menopause site when she died.  So, there’s a lot of stuff to do, but I can still work naps in.  I still could not work a normal work day.

September 25, 2023 – I still teach piano, am the Director of Communications for my church and keep the Cushing’s sites going – sort of.  I still take a lot of naps.

 

14. People would be surprised to know: that I have trouble dealing with so many things.

 

15. The hardest thing to accept about my new reality has been: that I can’t be the Energizer Bunny any more.  No project days where lots of stuff gets done.

 

16. Something I never thought I could do with my illness that I did was: start a website and support group to help others.

 

17. The commercials about my illness: NONE!

 

18. Something I really miss doing since I was diagnosed is: I miss Sweet Adelines.  I loved the singing, the dressing up in sequins and false eyelashes to sing before huge crowds.  Almost like being on Broadway.  I also miss playing violin in a local orchestra.

January 2024, I bought a silent e-violin so I can start practicing again without bothering my 100-year-old mom. In March I joined a balalaika orchestra!

In 2025 I’m sill playing with the balalaika orchestra

19. It was really hard to have to give up:my arthritis meds.

 

20. A new hobby I have taken up since my diagnosis is: Naps, sleeping.

 

21. If I could have one day of feeling normal again I would: I cannot even imagine.  I could join a gym again, although for only one day it wouldn’t do much.  I could commit to doing something in the afternoons without napping before.  I could get some of my house tidied up…

 

22. My illness has taught me: a lot about hormones, glands, medical terms and… HTML.  I almost think I could have gone to med school if I’d had the stamina.

 

23. Want to know a secret? One thing people say that gets under my skin is: “Oh, my friend’s dog (or cat/horse/ferret) had that [Cushing’s].  The vet just gave the dog some pills and she was fine.  GRRRRRRRRRRRRRRRRR!

 

24. But I love it when people: listen to me when I try to tell them a bit about Cushing’s, even if it is a dumbed-down version.

February 15-16, 2024 I had the opportunity to be in both Fair Oaks Emergency Room and the hospital in Fairfax, VA.

Whenever a nurse/medical tech mentioned steroids, I asked what they knew about Cushing’s. One asked if it was a medication. DUH!

Needless to say, none were very Cushing’s-savvy. So, I gave them all the abbreviated version of my Cushie Story.

I think (and hope!) that they will all remember the day that they met a real live Cushing’s patient.. 

My left knee surgey was supposed to be in early January 2025 but it was snowed out.  Because it was rescheduled for more than a month later, I had to redo some testing.  I was amazed that the doctor in the walk-in clinic knew about Cushing’s although she’d never met a real one in the wild.  I spent a lot of time talking to her.

25. My favorite motto, scripture, quote that gets me through tough times is:

Psalms 116:

“1 I love the LORD, for he heard my voice;he heard my cry for mercy.

 

2 Because he turned his ear to me, I will call on him as long as I live.

 

3 The cords of death entangled me,the anguish of the grave came upon me;I was overcome by trouble and sorrow.

 

4 Then I called on the name of the LORD:”O LORD, save me!”

 

5 The LORD is gracious and righteous;our God is full of compassion.

 

6 The LORD protects the simplehearted;when I was in great need, he saved me….”

 

After I was finished with the long diagnostic process, surgery and several post-op visits to NIH, I was asked to give the scripture reading at my church. The man who did the sermon that week was the survivor of a horrific accident where he and his family were hit by a van while waiting at an airport.

 

I thought I had written down the verse carefully. I practiced and practiced, I don’t like speaking in front of a crowd but I said I would. When I got to church, the verse was different. Maybe I wrote it down wrong, maybe someone changed it. Whatever. When I read this Psalm aloud, I just started crying, it so spoke to me and my situation.

 

Another reading I love is: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 this and “my” Psalm can help me more than anything else.

 

26. When someone is diagnosed I’d like to tell them: Learn everything you can about your disease.  You know more about your body than anyone else.  If your doctor tells you something that you know to be wrong about *you* – get another doctor!  Don’t waste your life getting good care for yourself.

 

27. Something that has surprised me about living with an illness is: how intolerant other people can be and the discrimination that I have run into, such as not being included in some activity just because my physical limitations would make it inconvenient for them to deal with accommodating me.

 

28. The nicest thing someone did for me when I wasn’t feeling well was: trying to understand that I wasn’t just fat and lazy, I really had medical issues going on.

 

29. I’m involved with Invisible Illness Week because: I like people to know that just because someone looks healthy, they may not be.  There are lots of people out there with invisible illnesses who need understanding, compassion and, possibly, help.

 

30. The fact that you read this list makes me feel: like you’re really interested.

 

The 2009 version was pretty close!

Thanks for being interested enough to read this!

🦓 Day 25, Cushing’s Awareness Challenge

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This is another semi-religious post so feel free to skip it 🙂

I’m sure that many would think that Abide With Me is a pretty strange choice for my all-time favorite hymn.

My dad was a Congregational (now United Church of Christ) minister so I was pretty regular in church attendance in my younger years.

Some Sunday evenings, he would preach on a circuit and I’d go with him to some of these tiny churches.  The people there, mostly older folks, liked the old hymns best – Fanny Crosby and so on.

So, some of my “favorite hymns” are those that I sang when I was out with my Dad.  Fond memories from long ago.

In 1986 I was finally diagnosed with Cushing’s after struggling with doctors and trying to get them to test for about 5 years.  I was going to go into the NIH (National Institutes of Health) in Bethesda, MD for final testing and then-experimental pituitary surgery.

I was terrified and sure that I wouldn’t survive the surgery.

Somehow, I found a 3-cassette tape set of Readers Digest Hymns and Songs of Inspiration and ordered that. The set came just before I went to NIH and I had it with me.

At NIH I set up a daily “routine” of sorts and listening to these tapes was a very important part of my day and helped me get through the ordeal of more testing, surgery, post-op and more.

When I had my kidney cancer surgery, those tapes were long broken and irreplaceable, but I had replaced all the songs – this time on my iPod.

Abide With Me was on this original tape set and it remains a favorite to this day.  Whenever we have an opportunity in church to pick a favorite, my hand always shoots up and I request page 700.  When someone in one of my handbell groups moves away, we always sign a hymnbook and give it to them.  I sign page 700.

I think that many people would probably think that this hymn is depressing.  Maybe it is but to me it signifies times in my life when I thought I might die and I was so comforted by the sentiments here.

This hymn is often associated with funeral services and has given hope and comfort to so many over the years – me included.

If you abide in Me, and My words abide in you, you will ask what you desire, and it shall be done for you.

~John 15:7

Abide With Me

Words: Henry F. Lyte, 1847.

Music: Eventide, William H. Monk, 1861. Mrs. Monk described the setting:

This tune was written at a time of great sorrow—when together we watched, as we did daily, the glories of the setting sun. As the last golden ray faded, he took some paper and penciled that tune which has gone all over the earth.

Lyte was inspired to write this hymn as he was dying of tuberculosis; he finished it the Sunday he gave his farewell sermon in the parish he served so many years. The next day, he left for Italy to regain his health. He didn’t make it, though—he died in Nice, France, three weeks after writing these words. Here is an excerpt from his farewell sermon:

O brethren, I stand here among you today, as alive from the dead, if I may hope to impress it upon you, and induce you to prepare for that solemn hour which must come to all, by a timely acquaintance with the death of Christ.

For over a century, the bells of his church at All Saints in Lower Brixham, Devonshire, have rung out “Abide with Me” daily. The hymn was sung at the wedding of King George VI, at the wedding of his daughter, the future Queen Elizabeth II, and at the funeral of Nobel peace prize winner Mother Teresa of Calcutta in1997.

 

Abide with me; fast falls the eventide;

The darkness deepens; Lord with me abide.

When other helpers fail and comforts flee,

Help of the helpless, O abide with me.

Swift to its close ebbs out life’s little day;

Earth’s joys grow dim; its glories pass away;

Change and decay in all around I see;

O Thou who changest not, abide with me.

Not a brief glance I beg, a passing word;

But as Thou dwell’st with Thy disciples, Lord,

Familiar, condescending, patient, free.

Come not to sojourn, but abide with me.

Come not in terrors, as the King of kings,

But kind and good, with healing in Thy wings,

Tears for all woes, a heart for every plea—

Come, Friend of sinners, and thus bide with me.

Thou on my head in early youth didst smile;

And, though rebellious and perverse meanwhile,

Thou hast not left me, oft as I left Thee,

On to the close, O Lord, abide with me.

I need Thy presence every passing hour.

What but Thy grace can foil the tempter’s power?

Who, like Thyself, my guide and stay can be?

Through cloud and sunshine, Lord, abide with me.

I fear no foe, with Thee at hand to bless;

Ills have no weight, and tears no bitterness.

Where is death’s sting? Where, grave, thy victory?

I triumph still, if Thou abide with me.

Hold Thou Thy cross before my closing eyes;

Shine through the gloom and point me to the skies.

Heaven’s morning breaks, and earth’s vain shadows flee;

In life, in death, O Lord, abide with me.

🦓 Day 22, Cushing’s Awareness Challenge

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This is a tough one.  Sometimes I’m in “why me” mode.  Why Cushing’s?  Why cancer?  Unfortunately, there’s not a thing I can do about either.  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 we well rested and not have had any nightmares the night before.  I remember my son is home for a visit but I let him 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 (or recorder or Aerophone or balalaika) for a bit, then go out to lunch with friends, taking Michael and my grandchildren 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.

I had wisely left something for dinner in the Ninja 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…

 

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

🦓 Day 18, Cushing’s Awareness Challenge

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And today, we talk about pink jeeps and ziplines…

How in the world did we get here in a Cushing’s Challenge?  I’m sliding these in because earlier I linked (possibly!) my growth hormone use as a cause of my cancer – and I took the GH due to Cushing’s issues.  Clear?  LOL

I had found out that I had my kidney cancer on Friday, April 28, 2006 and my surgery on May 9, 2006.  I was supposed to go on a Cushie Cruise to Bermuda on May 14, 2006.  My surgeon said that there was no way I could go on that cruise and I could not postpone my surgery until after that cruise.

I got out of the hospital on the day that the other Cushies left for the cruise and realized that I wouldn’t have been much (ANY!) fun and I wouldn’t have had any.

An especially amusing thread from that cruise is The Adventures of Penelopee Cruise (on the Cushing’s Help message boards).  Someone had brought a UFC jug and  decorated her and had her pose around the ship.

The beginning text reads:

Penelopee had a lovely time on Explorer of the Seas which was a five day cruise to Bermuda. She needed something to cheer her up since her brother, Tom, went off the deep end, but that’s another story!

Penelopee wanted to take in all of the sights and sounds of this lovely vessel. Every day she needed to do at least one special thing. Being a Cushie, she didn’t have enough spoons to do too much every day.

On the first day, she went sunning on the Libido deck……she didn’t last too long, only about 10 minutes. Goodness, look at her color! Do you think maybe her ACTH is too high?

Although I missed this trip, I was feeling well enough to go to Sedona, Arizona in August, 2006.  I convinced everyone that I was well enough to go off-road in a pink jeep,  DH wanted to report me to my surgeon but I survived without to much pain and posed for the header image.

In 2009, I figured I have “extra years” since I survived the cancer 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 a Caribbean cruise to replace the Cushie Cruise to Bermuda.

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.

Enough of adventures – fun ones like these, and scary ones like transsphenoidal surgery and radical nephrectomy!

🦓 Day 15, Cushing’s Awareness Challenge

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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 a couple days 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 15 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 cellphones 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 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 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 preop 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 will be repeating 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 up now.  When I was 10 years free of this cancer my kidney surgeon *thought* it would be ok to try the growth hormone again.  I was a little leery about this, especially where I didn’t notice that much improvement.

What to do?

BTW, I decided to…

🦓 Day 12, Cushing’s Awareness Challenge

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In March of 1987, after the endo finally confirmed that I had Cushing’s, I was sent to a local hospital where they repeated all those same tests for another week and decided that it was not my adrenal gland (Cushing’s Syndrome) creating the problem. The doctors and nurses had no idea what to do with me, so they put me on the brain cancer ward.

When I left this hospital after a week, we didn’t know any more than we had before.

As luck would have it, NIH (National Institutes of Health, Bethesda, Maryland) was doing a clinical trial of Cushing’s. I live in the same area as NIH so it was not too inconvenient but very scary at first to think of being tested there. At that time I only had a choice of NIH, Mayo Clinic and a place in Quebec to do this then-rare pituitary surgery called a Transsphenoidal Resection.

My husband asked my endo if it were his wife, if he would recommend this surgery.  The endo responded that he was divorcing his wife – he didn’t care what happened to her.  Oh, my!

I chose NIH – closest and free. After I was interviewed by the doctors there, I got a letter that I had been accepted into the clinical trial.

The night before I was admitted, I signed my will.  I was sure I was going to die there.  If not during testing, as a result of surgery.

The first time I was there was for 6 weeks as an inpatient. More of the same tests.

There were about 12 of us there and it was nice not to be alone with this mystery disease. Many of these Cushies (mostly women) were getting bald, couldn’t walk, having strokes, had diabetes. One was blind, one had a heart attack while I was there. Several were from Greece.

My first roommate was a nurse.  She spent the entire first night screaming in pain.  I was very glad when they moved me to a new room!

Towards the end of my testing period, I was looking forward to the surgery just to get this whole mess over with – either a cure or dying. While I was at NIH, I was gaining about a pound a day!

During the time I was home the weekend  before surgery, a college classmate of mine (I didn’t know her) DID die at NIH of a Cushing’s-related problem. I’m so glad I didn’t find out until reading the alumnae magazine a couple months later!  She was the same class, same major, same home-town, same disease…

We have a Scottish doctor named James Lind to thank for the clinical trial.  He  conducted the first ever clinical trial in 1747 and developed the theory that citrus fruits cured scurvy.  Lind  compared the effects of various different acidic substances, ranging from vinegar to cider, on groups of afflicted sailors, and found that the group who were given oranges and lemons had largely recovered from scurvy after 6 days.

I’d like to think that I advanced the knowledge of Cushing’s at least a little bit by being a guinea  pig in 1987-1989.

From the NIH: http://endocrine.niddk.nih.gov/pubs/cushings/cushings.aspx

Hope through Research

Several components of the National Institutes of Health (NIH) conduct and support research on Cushing’s syndrome and other disorders of the endocrine system, including the National Institute of Diabetes and Digestive and Kidney Diseases, the National Institute of Child Health and Human Development (NICHD), the National Institute of Neurological Disorders and Stroke, the National Cancer Institute, and the National Center for Research Resources.

NIH-supported scientists are conducting intensive research into the normal and abnormal function of the major endocrine glands and the many hormones of the endocrine system. Researchers continue to study the effects of excess cortisol, including its effect on brain structure and function. To refine the diagnostic process, studies are under way to assess the accuracy of existing screening tests and the effectiveness of new imaging techniques to evaluate patients with ectopic ACTH syndrome. Researchers are also investigating jugular vein sampling as a less invasive alternative to petrosal sinus sampling. Research into treatment options includes study of a new drug to treat the symptoms of Cushing’s syndrome caused by ectopic ACTH secretion.

Studies are under way to understand the causes of benign endocrine tumor formation, such as those that cause most cases of Cushing’s syndrome. In a few pituitary adenomas, specific gene defects have been identified and may provide important clues to understanding tumor formation. Endocrine factors may also play a role. Increasing evidence suggests that tumor formation is a multistep process. Understanding the basis of Cushing’s syndrome will yield new approaches to therapy.

The NIH supports research related to Cushing’s syndrome at medical centers throughout the United States. Scientists are also treating patients with Cushing’s syndrome at the NIH Clinical Center in Bethesda, MD. Physicians who are interested in referring an adult patient may contact Lynnette Nieman, M.D., at NICHD, 10 Center Drive, Room 1-3140, Bethesda, MD 20892-1109, or by phone at 301-496-8935. Physicians interested in referring a child or adolescent may contact Constantine Stratakis, M.D., D.Sc., at NICHD, 10 Center Drive, Room 1-3330, Bethesda, MD 20892-1103, or by phone at 301-402-1998.