Adrenal Cancer

Hi, my name is Sstaves. I'm here because

#MightyTogether #Depression #Anxiety #AdrenalCorticalCarcinoma #AdrenalInsufficiency #AdrenalCancer

#c
#AdrenalCancer

#AdrenalGlandTumor

I understood it well enough when it started. Yellow ribbon = bring home the hostages. (Remember that, kids? Americans were being held hostage by Iran back in the late 1970s.) Even the hostages themselves wore yellow ribbons as a secret signal that they knew people back home cared about them.

To me, it made little sense and the message was just a tad “off.” The origin of the yellow ribbon meme (we didn’t call it that then) was in a song, “Tie a Yellow Ribbon ‘Round the Old Oak Tree,” which was about a prisoner coming home to find a celebration of “a hundred yellow ribbons” around the tree.

Which was okay as far as it went, prisoners coming home, yellow ribbons to celebrate. But in the song, the ribbons were an answer to the question “Do you still want me?” (after being in prison). Regarding the hostages, that wasn’t a question at all. Of course we still wanted them (except possibly the one who read the Koran while captive).

Later came the pink ribbons, for #BreastCancer awareness. I have problems with this, too. Pink is the color that in our present society represents girls, so you’d think that pink would be a good choice. But the fact is that men get breast cancer too. And there are other diseases such as #Endometriosis and #CervicalCancer that are unique to those with female reproductive organs. What color ribbon do they get?

Actually, there’s an answer for that.

Endometriosis awareness ribbons are yellow, which adds to the confusion about prisoners and hostages. Cervical cancer awareness ribbons are teal and white (combined).

The number of diseases and conditions associated with each color has proliferated. My personal cause, #BipolarDisorder, shares the ribbon color green with #AdrenalCancer, bone marrow donation, #CerebralPalsy, #Dwarfism, eye injury, #Gastroparesis, #Glaucoma, leukemia, literacy, #Neurofibromatosis, and stem cell research, to name but a few.

These days we are encouraged to wear or decorate our profile pictures with orange ribbons for gun control. But orange already signifies awareness of:

ADHD
Agent Orange
COPD
Cultural Diversity
#KidneyCancer – Renal Cell Carcinoma
#Leukemia
#Lupus
Malnutrition
#MultipleSclerosis
Reflex Sympathetic Dystrophy (RSD) – #ComplexRegionalPainSyndrome (RSD).
Self Injury
#SensoryProcessingDisorder
Spinal #Cancer
#PraderwilliSyndrome

Admittedly, people who have those conditions and those who love them need support and awareness, but what does the ribbon actually mean when it means all of those things? Do people really go up to a ribbon-wearer and ask, “What are you wearing that ribbon for?” Or are they used only when a bunch of people gather who are advocating for the same thing, in which case why do they need ribbons?

The proliferation of ribbon colors is stunning, too. In addition to the green, yellow, pink, orange, and teal/white mentioned above, there are awareness ribbons in: black, blue (two-tone, blue/gray, denim jean blue, indigo, navy blue, light blue, robin’s egg blue, royal blue, pale blue), brown, burgundy, cloud (?), copper, cream, gray, gold, jade, peach, pearl, purple, puzzle (not technically a color), red, silver, teal, violet, yellow, and white, plus assorted combinations of the above and myriad shades of most. I could find only a few colors that represented a single condition or cause. And symbols proliferate, too: infinity, circle, star, butterfly, and even fox tail.

I once saw a person soliciting donations with a black-and-white cow-spotted ribbon, for a dairy farmer who’d lost his barn in a fire. A number of the other colored ribbons are used for fundraising too, particularly the Susan G. Komen Foundation’s pink ribbons, which can be found on nearly any piece of merchandise you’d care to name. But if you have a t-shirt with, say, a green ribbon design and a slogan about bipolar awareness, why do you need the ribbon at all? The slogan carries the necessary information.

Will ribbons for causes go out of vogue? Not soon, anyway. I’m not saying that all these causes and conditions don’t need awareness and understanding and fundraising. And there are certainly “orphan diseases” that don’t have the awareness factor that pink ribbons convey.

What I’m worried about is the signal-to-noise ratio. With all the combinations, what does any particular one mean? (I had to look them up on a chart to write this post – www.disabled-world.com/disability/awareness/ribbons.php#Disabilitywww.disabled-world.com/disability/awareness/ribbons.php

After all, what does a pink ribbon really convey? Self-check your breasts monthly? Get mammograms? Celebrate survivors? Give money?

Ribbons are easy to make and to wear, but knowing what to do about what they represent is a matter for education, not just awareness.

Yesterday marked 16 years since my initial brain tumour diagnosis. Yesterday was also the day we had a Neuro-oncologist come and speak to our brain tumour support group about Gamma Knife™. It brought a lot of clarity for me in ways I had not expected.

When I was first diagnosed, I could not find a neurosurgeon in my state willing to take on the delicate surgery required. I searched for 8 years without any success until I looked interstate. I found a neurosurgeon willing to take the risk and confident in his ability to help me. I cried tears of joy at the news he could save my life.

After surgery I was very angry with the neurosurgeons who had refused to treat me. I wanted to go and see each and every one of them, stand tall and tell them that I had won the battle despite them. However, I didn’t do that. I can to realise that I was far better off having a confident neurosurgeon with my life in his hands than some one who was not confident or able to do the job.

Yesterday as I sat and listened to the presentation about Gamma Knife™ , I realised that while Gamma Knife™ could have worked for me and saved me from many of the deficits I experienced after surgery, it wasn’t available in my area until 2015. I was given a prognosis of 6 months in 2010 so there is no way I would have been able to access the new technology.

It has changed my perspective and I have been able to let go of those last feelings of anger and frustration about my medical treatment. Quite simply, I was not able to access the services I needed because they were not available. It wasn’t personal. It was most likely very difficult for the specialists I saw to turn me down. I have a new sense of freedom, compassion and understanding. I not only forgive the specialists who said no, I have great empathy for them.

The tide has turned. #AdrenalCancer

She had over 30, 000 followers and her picture showed up in my feed. Instagram Girl was wearing a bra top and yoga pants and was taking a selfie from the side. I stopped scrolling to read under her photo. When I was done I realized, ‘Instagram Girl you need to meet the girl with #Cancer.’

Instagram Girl You Need To Meet The Girl With Cancer

Something about Instagram Girl reminded me of my daughter-in-law Jazmin.

She was ultra-thin. I thought to myself, “Maybe she has cancer too?” I’ve learned not to assume people are thin on purpose. So, I decided to read up about her and came to the conclusion that she didn’t have cancer. She was quite proud of herself for recently losing weight. Instagram Girl was also trying to help others become ultra-thin like her. She looked to weigh about 100 lbs and was possibly 20 lbs underweight. But it’s hard to tell from a photo on social media.

Jazmin is 25 lbs lighter than her normal body weight right now. She doesn’t talk about it much or let her weight bother her. Jazmin has accepted that this is what comes with having stage 4 #AdrenalCancer. But if she had a roll to squeeze around her middle she’d probably be delighted! Recently she learned one of her pain medications causes muscle wasting. She decided she wanted to wean off that medication.

Jazmin’s goal is to be healthy and have a good quality of life. Ultra-thin was never her goal.

Jazmin and Eythan walking through a park.

I thought about how Jazmin would gladly trade in her body with for being overweight by 20-30 lbs.

Most of Jazmin’s weeks are filled with doctors appointments, pain management, home care visits and trying very hard to lead a normal life. Yet, she’s been an inspiration to many girls and women with her outlook on suffering and still finding joy amidst the pain. Jazmin believes God has a greater purpose behind her suffering. *Read her post, Totally Unfiltered: Who I am Today.

For now, I am enjoying life. I live day by day. Each day may be amazing or terrible but my husband, Eythan and I are enjoying every second that we have together now, just in case.

Jazmin

jazmin and Eythan at his workplace.

Eythan and Jazmin have only been married a year and a half. They have lived in two apartments, a house, and just recently moved into another house. Jazmin also lived with us, her favourite inlaws, and also a family in Arizona during treatment. Her life has not been stable, organized or pretty.

Jazmin sitting on a chair in the kitchen.

This past year, Jazmin has helped plan a conference for women, spoken at a conference, modelled for a clothing company: Eddie Mira Clothing, painted her new house, planned a baby shower for her new niece, been an amazing wife, taken an online course, been on the radio sharing her story, and encouraged people with her journey through blogging. Visit her site: Jazmin Unfiltered.

Jazmin has created a lot of meaning in her life, even though she can’t work and some weeks she’s in bed for the most part.

Jazmin and Cindy painting the living room in the new house

Me and Jazmin painting their new house rental.

Margaret Niemczyk asked Jazmin to model for her clothing company, Eddie Mira Clothing because she wanted a young woman who would inspire others with her outlook on life. Margaret didn’t pick Jazmin because she was thin, she chose her because Jazmin has been a wonderful role model for other young women to look up to.

I thought of Instagram Girl and her priorities. I wondered what she could be doing to influence the world instead of trying to help girls get thin.

Jazmin and Kyle in their housecoats

*pictured above, Jazmin and Kyle. Kyle has autism and Jazmin is the sweetest sister-in-law to him.

Watching Jazmin deal with terminal has been incredibly uplifting. Sounds strange, I know. Most people fear this disease, and if they ever heard that word from their doctor’s lips, their world would come crashing down.

But Jazmin takes each day, one at a time. She’s asked her doctors not to give her a timeline, and not to tell her how much the tumours have grown in between CAT scans. She doesn’t want the results to affect her attitude or mindset of, “My life is in God’s hands and he determines my timeline.”

If she had accepted chemo, Jazmin had a 20% chance of living five more years. Jazmin’s family decided to forgo the chemo, so her quality of life could be good for the short time she had left. In just a few more months Jazmin will have outlived the prognosis.

Now each day is a miracle in itself.

Jazmin’s will not be disappearing EVER unless she gets a miracle. There’s nothing the medical community can do to make it go away. But she cherishes each day as a gift and tries her best to keep living life with purpose and an unselfish heart. *I wrote another post, The Joys of Having Jazmin. You can read the ways in which Jazmin has touched other people’s lives.

Instagram Girl you need to meet the girl with .

Eythan and Jazmin holding baby Alice.

* Eythan and Jazmin holding their niece Alice. Jazmin helped her sister-in-law Charity through labour. She was a wonderful support to Charity and Dan.

Jazmin lives purposely. She has chosen to do things that are meaningful to her or those she loves.

I’ve seen Jazmin go to events when she was in pain because she knew it was important to someone she loves. Rarely, have I seen her live selfishly.

Jazmin generously gives of her time, encouragement and hospitality:

If you want someone to cheer you on when you are going to try something new or scary, you need Jazmin. When you are going to organize an event and can’t do it alone, you need Jazmin. If you are feeling hopeless about your situation, you need Jazmin. If you become really successful at something and want someone to jump up and down and celebrate with you, you need Jazmin.

Instagram Girl could impact the world in a profound way. She could help mom’s with nutrition for kids, or assist the elderly in eating better. She could lobby the government to feed children after school, whose family’s don’t provide dinner. Her talents could be used to make a huge impact on the people around her.

At the end of our life, we leave these bodies behind, and they no longer have value. To focus on getting them to a state where they are underweight seems meaningless.

What is your purpose in life? Do you believe it will change the world for the better? Ask yourself these questions:

What can I do to make the world a better place to live? Do I have talents or gifts that I can use to bring others happiness or joy? How can I leave behind a meaningful legacy people will remember?

Jazmin sitting on a chair in the kitchen

*Bring an elderly person some flowers.

*Babysit for a new mom.

*Send a card to a single mother telling her she’s doing a good job.

*Shovel someone’s driveway.

*Buy coffee for the person behind you in line.

*Open the door for someone ahead of you.

*Write a letter to a war veteran.

The list is endless to the happiness you can bring other people.

Allow your life-goals to be; kindness, compassion, serving, and also bringing joy to those around you.

In a world of thin-is-in lies; be the one who helps people realize life is about using our gifts purposefully, to make the world a more beautiful place to live.