Apologies

    I’m sorry I let this blog basically die. Cancer DEFINITELY has been the “easy” part over the years. My cancer is still growing but it is going very slow. I don’t know how I got so lucky. The rest of my body though is being an asshole plain and simple!

My diagnosis‘ as they stand now are- Metastatic Medullary Thyroid Cancer, Adrenal Insufficiency (lost both adrenals to pheos), Hypothyroidism (no thyroid), Peripheral Neuropathy, Degenerative Disc Disease, Hypermobility Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Mast Cell Activation Syndrome, Dyshidrotic Eczema, Migraines, PTSD, Adult ADHD, and a bunch of small stuff. Lol. Its alot and it makes life hard at times. I go for genetic testing soon to figure some things out.

The kids are doing good. My oldest has Pheos growing but they are slow and we are watching them and waiting. Thankfully they aren’t affecting his blood pressure or anything right now. He had something go on with his heart awhile ago so we are still seeking answers to that. My daughter is symptom free and hopefully beyond being a thyroid cancer survivor I hope she’s done with all of this.

My oldest son and his wife had a baby in 2017. She is thankfully MEN2a NEGATIVE. The best news an Amma could get.

 

Anyway- we are here and I’m sorry I’ve been lax.

Just Keep Swimming...

So obviously I still suck at this but I'm trying. Life seems to keep running full steam ahead and I'm forever trying to catch up.

In January I finally had my first appointment with an Oncologist, Dr F. I have felt from the beginning of all this that I should have had an Oncologist even if they couldn't do anything for the cancer or it wasn't at a point where more surgery was needed. A doctor I had previously didn't think I needed one but my new Endocrinologist said it's something she considers mandatory for all her patients with MTC. I have to admit, I feel better having an Onc even if it's just for a once a year checkup visit. You never know when things might go south and I'd rather not have to worry about finding someone during that time.

Anyway- love the Oncologist and I have a full team now of nothing but female doctors which makes me very happy. As I've previously posted, I have not had good luck with male doctors in the past (except the PA who originally found my cancer, of course) as one was a complete asshole piece of shit (the first rheumatologist) and another almost killed me. I like and feel comfortable with all my doctors making one less stressor in my life.

So findings at the Oncologist were that my calcitonin levels have risen again. Not a lot but it's definitely back on the rise. I also found out that the "tumors" I was told I had in my lungs several years ago are NOT tumors but scar tissue from my old bouts with bronchitis and pneumonia as well as from my asthma issues. So that is a HUGE weight off my shoulders. I also don't have cancer in my neck which is also good but we have no clue where the cancer is exactly and that is bad. I think I would rather know where it is than not because then my thoughts instantly go to the bones and I stress myself. We're watching and waiting at this point so just appointments every six months, testing, and following up.

My Neurologist also sent me to see a Cardiologist and had tests run because my dizziness has been getting quite a bit worse over the last year. I'm happy to say that tests showed my heart is nice and healthy so no worries there. They also helped us pin down what IS wrong and that I've had what's called Postural Orthorstatic Tachycardia Syndrome aka POTS for several years. So many of my symptoms over the years now make sense and while having yet another diagnosis sucks, I'm glad to now know so I'm can learn about it and be able to better battle it.

Remembering This Blog's Purpose

I know I haven't posted in forever and I'm sorry. My brain kept telling me that there was no reason to post since things never really get better but recently I was reminded why I started this blog. I started it because when I Googled "MEN2a" in hopes of finding someone who could help me understand all this, I came up empty. There were no blogs for people like us and that leaves you feeling pretty lonely. Right then I decided that no one else would ever have to feel that way because I would be here.

Sadly there still aren't any MEN2a blogs that I could find and its been 10 years. Earlier this month though I was shown once again why me doing this is important. Everytime I get an email from one of you I realize all over again that this is important. So thank you KELLY for being the one to remind me this time.

I will do better in the future and I am here for all of you with MEN2a, medullary thyroid cancer, Pheochromocytomas, neuropathy, and all the other crap, crud, and junk that comes with this. I will help you through this as best as I can.

You are not alone

I'm A Neuropathic Nightmare!!

I saw the Neurologist and found out after many tests, scans, and pokey needle things that I definitely have Peripheral Neuropathy which we already knew but now I have an updated diagnosis of it for my records. What I wasn't expecting was that when I brought the papers home and looked at them I saw that the doctor had written down, "Small Fiber Neuropathy", "Idiopathic Neuropathy" (which just means no clue what caused it), and "Autonomic Neuropathy".

The thing that bothers me is the Autonomic Neuropathy because it's one that affects your organs and explains why I've been getting dizzy a lot. It seems it is affecting my heart although only very mildly at this point. We aren't sure yet what other organs are being compromised yet and I can't say I'm in a hurry to find out.

I also found out that I have to have an MRI and I'm being referred to a pain clinic because she honestly thinks that at this point I'm going to need pain meds. Not what I wanted to hear but also what I already knew too. I've tried all the medications to try to help with this neuropathy and I've either had bad reactions or there is my Gabapentin which keeps me sane and not wanting to gnaw my limbs off but doesn't actually help pain. I absolutely hate pain medications and will have to mentally become okay with taking them so we will see.

Big B and Sis are doing alright and plugging along in this shithole we call life. All I can hope is that they are smarter than I was at that age and make the most of their lives. I want the best of everything for them and it's hard once your children become adults because you can't give them that or do it for them. As adults they have to go get it for themselves. Can't help wanting to care for my "babies" no matter how big they get though. Lol.

The "Legacy" Continues...

About a week ago I received some good news to balance out the bad news we had received the week before. The good news- my calcitonin levels haven't risen in the last eight months! I was so very relieved to hear this as I'm sure other Meddies can understand.

The odd thing was that I was on the verge of having a panic attack waiting to hear these newest results which is so very unlike me. I have NEVER had anxiety about my results before even if I knew they would be bad! Come to find out, my TSH levels were high and my Endo said that can cause anxiety. That might also explain why I've been having such gory nightmares lately too! Lol

Bad news was that my oldest child (21 year old son) got the results of his 24 hour urine test and we are finally at a point where he needs to have surgery for the Pheochromocytomas that are forming. It breaks my heart that my children have to go through this too but thankfully he has a mama who has educated herself on this who will help him through.

My son has decided to have Dr. Jeff Moley in St Louis do his laparoscopic Pheos surgery. This is the man I wish I had asked to do mine and I know in my heart that he will make sure my son doesn't end up messed up like me.

Big B will have the surgery after the New Year when him, his fiancé, and I will drive to St. Louis. I'm honored that at 21 he still wants me to be a part of this.

In other news- my Endo had me quit my 2 liter a day habit of drinking soda which cut out all caffeine and most sugar for me (yes, I've been a real bitch this week!), my Fibromyalgia is behaving itself, my Peripheral Neuropathy is getting worse all the time, and I think my Costochondritis is actually Tietzes Syndrome due to where my pain is located. The other 2 million diagnosis' I have really don't bother me much so they're not worth reporting.

Ahhhhhhh the life of a messed up MEN2a Meddie....gotta love it! Lol

To Everyone Who Has Contacted Me...

And not received an answer, I just want to tell you that I am NOT ignoring you at all. I have recently found several emails that were missed in the high volume of mail that my tjcoiner and JoBurzycki accounts receive and I am so very sorry for that. I've also just found out that I should be hitting "Other" when checking messages on Facebook as well because I found several in that folder today. Again, I am sorry.

I want you all to know I appreciate you reaching out to me and sharing your stories. They ARE important to me and know that as I read through the mail I am thinking of you, sending healing thoughts, and looking forward to getting back to you. I'm ashamed to say I even found one email from 2010 in the mess.

So please know. I AM listening and I DO care. Obviously Yahoo and Facebook doesn't though. Lol.
Hugz,
Jo

Goodbye and Love to Susan/WhyMommy

It is as always with sadness that I tell you we have lost yet another amazing woman to her fight with cancer. Susan aka WhyMommy of Toddler Planet fame lost her battle with IBC (Inflammatory Breast Cancer) on February 6th, 2012.

Susan was and will always be an inspiration to so very many women. Not only did she fight her own battle (through multiple recurrences) but she was also an advocate for woman, a scientist, a renowned blogger, and just all around amazing person. My own experience with her showed her to be helpful, kind, patient, and caring. I feel honored to have known her even the little that I did.

My heart and thoughts go out to her family. Nothing can take away the pain of your loss but know that Susan will be remembered by so very many as the wonderful person she was.

I would like to end with her mantra that is posted on her own blog

"All that survives after our death are publications and people. So look carefully after the words you write, the thoughts and publications you create, and how you love others.  For these are the only things that will remain." ~Susan Niebur