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Hi new here im a rare zebra

Hi new here im a rare zebra

Posted by Lea1990 on Aug 28, 2020 12:24 am

Will start by saying i am dyslexic and  visual processing disorder which make me strugle with spelling and punctuation i will never be offended if you ask for clarification if something is hard to understand . 

 

Hi my name is Lea I’m 30 years old, i have been diagnosed with stage 4 Neuroendocrine cancer ( and 2b Thymoma) . So a bit about me before getting to my diagnosis story , im happily married with two fur babies ( Chihuahuas) my hubby is a personal support worker , i used to work as an ECE at a daycare  but have been unable to work for 4 years. I  am a Christian who loves art , I enjoy volunteering with youth and children at church so now that you know a bit about me the details that bring me to this forum for the last four years I have had unexplained symptoms including heart palpitations , diarrhea  body aches , muscle weakness, weight gain and flushing . I was worked up for autoimmune illness one doctor said i had antibody negative lupus but that did not fit right to me but I excepted it cause it was some sort of answer . But two year into that diagnosis i got worse my muscle weakness got to the point I could not physically hold my head up chewing food became hard. My husband was very concerned especially when my eye started to droop so i agreed to go to a walk in clinic as i had gone to er so many times  in last 4years i was beginning to feel they thought it was anxiety . Well this decision probably saved my life Oct 2019 i walk into the office the doctor looked at me and said pretty sure  you have myasthenia gravies  lets send you to get some labs in meantime i wanna try something if you ok with that so he gave me a med called Mestinon and with in 45 minutes i could hold my head up and my eyes were open again. So i ended up getting a neurology consult and he sent me for a Ct scan  i never expected they would find anything  but they did a 12 cm mass on my thymus gland  i went to a surgeon and he said sorry but he would not touch it  it was wrapped around a main artery . But he reluctantly agreed to biopsy it came back Thymoma 2b, was put on  Cisplatin chemo for 6 rounds  but had to stop at 4 due to liver Toxicity. The plan was to rescan in a few months  and give my body a break then try a combo of radiation and chemo ,  for timeline sake at about 6 months  post Thymoma diagnosis I was continuing to have episode of flushing and diarrhea , heart palpitations and low-grade fevers i was sent to internal medicine cause no one could figure it out , that doctor decided to run a few blood test one was a Cga  and a 24 hour urine test 5hiaa , they were both crazy high so i was sent for a Special scan  called octritide scan. It showed i had multiple small tumours on my liver and in my stomach and small intestine. And my thymus really let up So i was sent to an oncologist that  ran more test ( 3 biopsy liver, stomach and small intestine) all came back as Neuroendocrine tumour with highest grade being a grade2/3  ki67 of 19%( they noted it as atypical carcinoid )   So i am now about to start octritide injection next week and meeting with an oncologist who is familiar with nets on the 8th have only had  a telephone appointment with him thus far but he seems great  he diagnosed me with carcinoid syndrome and Cushing’s syndrome. Covid has slowed everything down i waited 3 months for endoscopy for stomach biopsy but thing are finally moving  I finally have names forvwhat was wtong as scary as it its is its also very validating.. i could go on and give way more details but this post if already very long .. lol.  thanks for listening I sometimes feel  awkward talking to people in my life about  my cancer  cause it makes them uncomfortable . 

Re: Hi new here im a rare zebra

Posted by Kims1961 on Aug 28, 2020 1:08 am

Welcome Lea1990‍  🐎 ( A horse is the closest i could get to a zebra!). What a great subject line - rare zebra!  Sounds exotic and special.

What a story you have.  Thank goodness your husband had you go to that walk in clinic. I so agree with you, even if our diagnosis is cancer - knowing what we have and an explanation for the symptoms we are feeling is so validating.  I realized I couldn’t change my own diagnosis of breast cancer but i could do my best to be informed and empowered.

It sounds like you have a very full life with your volunteering, the church, art etc.  Do you have some support there for you?  What type of art do you enjoy?  I know other members have commented how the creative process can really help with the mental health journey that goes along with a cancer diagnosis.  

I’m sure you have thought of questions for your oncologist next week.  I wrote mine down in a journal so I wouldn’t forget .There are also some good tips and pamphlets on www.cancer.ca

Please let us know how your appt. goes.  So glad you posted.  Kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Hi new here im a rare zebra

Posted by Lacey_Moderator on Aug 28, 2020 9:57 am

Lea1990‍ 

Welcome, zebras welcome here!

Even though your cancer is rare there are many other details you can connect around like, treatment types, the emotional aspect of cancer, navigating the healthcare system, etc! We are comfortable talking about cancer too- I'm glad you found us!

You bring up a great point after being unwell and going for testing for so long it is validating to finally know what is wrong. Hopefully this will lead to feeling better!

We have some info on our website about thymus cancer here: https://www.cancer.ca/en/cancer-information/cancer-type/thymus/thymus-cancer/?region=on. We also have a Cancer Information Helpline you can call for more information at 1-888-939-3333. To prepare for your appointment you may find out booklet Questions to ask when you have cancer.

Here is a link to other discussion and members with cancer of the thymus: https://cancerconnection.ca/search?query=thymus. Read through and feel free to reach out to the other members.

Please keep us posted!

Lacey

Re: Hi new here im a rare zebra

Posted by Lea1990 on Aug 31, 2020 11:25 am

Hi Kims1961‍ thanks for reply i am a zebras
 but cant yake credit for comming up with that name 😂😂. rare diseases  Are called zebra  because  doctors are taught when you hear hoofbeats Think horses not zebras..  which mean alway look for the most Simple and obvious explanation sadly rare thing can be missed because of this  i am not a horse im a zebra  which means  Sometime hoofbeats can be zebras ! 

I have a pretty good church support system ! One church friend in particular has been amazing  i don't drive so she has taken me to many appointments , has supported me  Through moment of anger , fears , frustrations and sadness . I dont have much family support as my husband mother has severe mental illness , and my family is not that close we see each other At Christmas and maybe one other time a year  ( i grew up in foster care So there are so deep  Trust issue there )  but i have built a very good family of choice !! I have An amazing Group of friends  whom are more like family .

i like to sketch and paint , l like carfting things too ! Ill see if i can figure out how to attach a few sketches  , i only discovered my love for art in last 2 years so im by all mean not amazing  At it but i find it so therapeutic ! 

Yes i have a long list of questions lol i wrote them down !  My hubby also took the 8th off to be apart of the call so he can ask questions too and help me remember the answers given 😂 been off chemo for 5 months but a swear my memory is permanently bad now. Now instead of calling it chemo brain though I just say brain fog.

how are you doing  on your cancer Journey? I hope you are doing well !  I see by description at end of  your reply You have two kiddos  how old are they?  How are you and them coping durring covid? 

anyway thanks again for replying to my post . Hope u have a great day 

 🦓
Attached files

Re: Hi new here im a rare zebra

Posted by Lacey_Moderator on Aug 31, 2020 11:39 am

Lea1990‍ 

'Family of choice' I love that soooo important to surround yourself with people who support you.

Love your sketches have you seen our Creation Nation group? Here is a link: https://cancerconnection.ca/groups/home/93 they would also love to see your sketches!

Wishing you all the best with your upcoming appointment I'm glad your hubby has the time off to attend.

Take care,
Lacey

Re: Hi new here im a rare zebra

Posted by Kims1961 on Aug 31, 2020 2:17 pm

Lea1990‍ ...I had no idea about the zebra terminology, how interesting. My hope is that doctors keep in mind when they see horses that there are zebras out there too...and donkeys, ponies, lol...

Lacey_adminCCS‍  Gave some wonderful suggestions, especially about the Creation Nation . Thank you for sharing your sketches-you do a wonderful job with proportions.

So happy to hear about your support. I also love the term “ Family of Choice” So true, sometimes the term family/kin can really be anyone that is important to us, not always blood relatives. 

I am 59 and have 2 adult children-26 and 24.  I live in a very small town so self isolating has been easy😄 although it has really been a very interesting time. I am 3 yr from surgery and feel back to my old self..or maybe i’m a new self, who has more gratitude for each day?🤷‍♀️

Good luck on the 8th, please let me know how you make out! Kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Hi new here im a rare zebra

Posted by Lea1990 on Aug 31, 2020 3:09 pm

Thanks Lacey_adminCCS‍  i joined the creations group , and im going Check out thymus group now ! Thanks for all your helpful link and info ! 

Re: Hi new here im a rare zebra

Posted by Lacey_Moderator on Sep 1, 2020 10:56 am

Lea1990‍ 

You are very welcome!

Re: Hi new here im a rare zebra

Posted by Danae on Sep 2, 2020 6:17 am

Hi Lea1990‍ !
Your pictures are incredible!
The term zebra 🦓 is also a very good description that I will steal from you. Some times or more times doctors, especially in the ER, will not look for something outside the normal. Happened few times. Wishing all the best and let us zebras to get louder so we can be heard.