Tomorrow is 7 Day post op. I’m home from the hospital! Thankful and grateful for my healing. More soon.
Tomorrow is 7 Day post op. I’m home from the hospital! Thankful and grateful for my healing. More soon.
I’m having surgery tomorrow.
You know, I swore that after my last surgery (the hysterectomy) that I would NEVER have another surgery. Never ever.
And, yet here we are.
For the record, thankfully it’s not on my brain or my breasts.
It’s time to say goodbye to my gallbladder.
Catch you on the flip side friends!
I don’t express myself well. In fact, I never have. Either written or verbal,
it’s just a mess I struggle getting my thoughts out.
So, maybe you’re thinking, “Well, then why did you create this blog?”
In looking back over these 6 years I realize it was to give meaning and purpose to my voice; my life with 2 brain tumors and a Rare Disease called Cowden Syndrome.
Some of you may know I attend the Church of Jesus Christ of Latter-day Saints. It has been a huge part of my life for actually – most of it. I have several generations of Pioneer Ancestors and am thankful and grateful to have that heritage in my life.
When I began this blog years ago, I did have faith and knowledge of our Savior and His role in my life. It had been tested over the years, or granted, I had been tested. Nothing on par with getting diagnosed with 2 brain tumors, but you get my drift.
Yet looking back, I truly didn’t understand anything. I don’t feel I ever was truly mad at Heavenly Father once I got diagnosed, I just was pretty bleh about my life and everything that came with it. I just didn’t care. About anything. Not anger just indifference. I didn’t care. Period.
Fast forward through years of therapy, life, writing on this blog, etc. I am glad I can now ponder about that time in my life. I am so happy with my decision to start this blog so that time of my life is documented in this small space on the Internet. What I was thinking/doing/feeling/wanting/fearing at the moments of getting diagnosed with a brain tumor and subsequent Rare Disease of Cowden Syndrome are emotions I don’t like to recall often, but glad I can review them if I want to.
Every 6 months my church has General Conference, where the Leaders and Prophet counsel us. It is quite a momentous event and I have been blessed enough to attend 2 (3?) times in my life, once in the Tabernacle and once in the Conference Center (when it was dedicated!). I attended church yesterday and I suppose this is why this is on my mind to write about. I feel renewed that I have this faith and knowledge I can always rely on, it is always there for me, if I choose to embrace it. I cannot ever deny what I know to be true.
Over the last few months I started this habit (I guess it’s a habit, although maybe a goal is a better word?) to choose a Conference talk to listen to each day. There is no rhyme or reason to my choosing. I open the app, scroll to a year (today’s was 2004) and then click.
Today’s Conference talk is Believe by Sister Dalton.
This is all coming full circle for me and I am grateful to see the connection.
It was just what I needed to hear today and I would like to share it with you.
Do you have any daily habits or goals you work on achieving?
I recently realized I like to shop/surf the web when I am bored. Or hungry. Or lonely. Or tired. I have found myself often looking at websites I have no business being on (Amazon, Target, QVC, etc.)
Now that I have had this lightbulb moment I want to do some behavior modifications (love how I know these big words yet have no idea how to start this into my life, HAHA)…
Seems like most everyone I know is a YouTuber, or has a “Channel”. Of course, I know of You Tube and have gone down that black hole many a times. But, my purpose now is to find Channels to watch that I have some sort of connection to: Disney, Health, Rare Disease, brain tumor, etc. I love to listen to podcasts (click here to see my absolute favorite EVER!) but this is a way I can branch out, with a purpose.
When I find some more I like I’ll let you guys know. Are there any podcasts or YouTube Channels you like?
One of the things I am most passionate about is connecting with others who have this PTEN gene mutation called Cowden Syndrome. I know I have said this many times, but I only wish SOMEONE would have told me 6 years ago that I am not alone and I am not going to die tomorrow.
Connecting with others through social media has really given me a boost of strength. I am always excited and humbled when those warriors agree to share their story with me and others: We have so much to educate the world about! I have met a few persons who don’t wish to take part. Of course that is their choice and I must respect it. I just want to tell the
World Internet that there’s this “other thing” that can cause breast cancer, brain tumors, etc. that has nothing to do with the BRCA gene.
I am excited to introduce you to Cora – here is her story (and incidentally, it’s quite similar to mine!)
When I was an undergrad, late teens and early 20s, I would get headaches for which there are no bad words, no curses strong enough to cover the pain I felt. I would feel a pounding in my ears and in the back of my head; I wept every time. They usually came around mid-terms and finals so I wrote them off as stress headaches, took my 4 Extra-Strength Excedrin—every couple of hours— for the duration of the headache, and carried on. They would eventually go away so I didn’t think anything of it.
From that time till 2002, I really don’t remember having any other experiences, any other headaches but in late 02, my then-husband and I lived in Buda, Texas, and the headaches returned. For some who have allergies, the greater Austin area is awful; I found out that I was one of those people. I took the headaches as sort of a violent reaction to the pollen that was floating around in the air. I started on my daily regimen of 3 or 4 Extra-Strength Excedrin again and things seemed to even out.
I don’t know when it happened but at some point I started waking up at around 4am every morning from the pounding in my head. I’d get up from my bed and tip toe downstairs to sleep sitting up on the couch; that’s all I could do because every time I laid down the pounding would start again. It started to take a toll on me. One day, in the parking lot of the local Sam’s I passed out. Thankfully someone saw me and brought me inside; thinking it was related to Diabetes, they brought me some orange juice and after a few minutes I felt fine. I passed out again a couple of weeks later, in the shower of all places. With the passing out came problems with my vision and I decided to go see an ophthalmologist. The doctor told me that the vision problems were the result of a “swelling of the optic nerve” caused by, among other things, a brain tumor. He ordered an MRI and that’s when everything started.
The MRI showed that I did indeed have a mass in my cerebellum preventing the proper flow of spinal fluid (reason for the pounding). The MRI was on a Thursday and the doctor prescribed a course of steroids for me to shrink the tumor a little so the headaches would go away; headaches went away but I found that “riod rage” is real, it was awful.
Went to see the neurosurgeon on that following Monday and he told my ex and myself that he “really wanted me to go into the hospital immediately because he really wanted to take the tumor out the next morning” so in I went. I seem to remember someone saying that it was 5 centimeters, it was congenital so it had time to grow. I was 32-years-old.
After the surgery, I remember coming to with my ex, my mother, and my son in the ICU with me. Long story short, they’d removed the tumor and I had what I call a “straw” coming out of the top of my head; the doctor wanted to see if the spinal fluid pressure would equalize or if I would need a shunt (I didn’t it turned out). They’d only shaved the bottom half of my head (??) and the top right bit above my eye for the “straw”. My son, who was 6 at the time and will FOREVER be the most brave human being on the planet…ever, told me I looked like Two Face from Batman from the crazy hair—I love this kid forever.
Next morning the doctor came to see me and we discussed what the next step was. He told me that their pathology books didn’t know what caused it but that it was L’hermitte Duclos, a rare benign tumor. I remember that he told me it had begun to inculcate itself into my brain but being benign, he removed only what he needed to to clear the path for spinal fluid.
No one could tell me what had caused it so I made peace with the weirdness of it and that I was alive and, over the next few years, googled the name of the tumor trying to find out what I could. I kept seeing the name Cowden Syndrome come up in the papers I could get free access to on the net.
In 2003, we’d moved back to Baton Rouge and I got in touch with a neurosurgeon in New Orléans to continue whatever treatment I needed. I brought up to him what I’d found and asked if I needed to speak with a geneticist. He repeated what my first surgeon’d told me, that they didn’t know what caused the tumor, but that he’d happily hook me up with a geneticist if I wanted to… I said yes and met Dr. Thomas. I explained what had happened to Dr. Thomas and he took some measurements, asked me some questions, and we eventually did a DNA test to see if my p10 gene was indeed messed up—it was. Immediately we tested my son and he is fine, thank God.
Wondering how the hell I’d stumbled across all of this Dr. Thomas told me that if an anomaly existed in someone’s genes it would come from the father if he were to have kids after the age of, I think, 53. My father was 54 when I was born.
In 2005, Dr. Bhushan, the best endocrinologist on earth, found growths on my thyroid that were too small to be aspirated with a needle so he suggested that I get my thyroid removed to be biopsied. I did and it was benign.
In 2007 I had a spinal fusion. Completely unrelated to CS but it was an hereditary condition that my siblings and I got from our father.
In 2012 the big deal happened. A mammogram showed that I had some tumors in one breast. My breast doctor along with my gynecologist and I decided that it was important, because of CS, that I have both breasts removed. Before the surgery, we found that there were tumors in both breasts. I had the double complete mastectomy with reconstruction and have been fine since.
I am humbled by Heather’s asking me to post what I went through. I ask your indulgence because I am not a writer and I know that mine is, by far, not the worst case of things. If anyone has a question, or news to share, I invite you to contact me at email@example.com.
While pink is not a cure and gray isn’t either, it still needs to be on our minds, hearts, mouths and in the media. Who will take the first step?
Will you take the first step?
I didn’t want to do much ranting or complaining as of late. Because news. Yet, I have this blog and continue to share because I hope I can educate ONE PERSON about Cowden Syndrome who might have never heard of it before me. (Like the technician who did my mammo who’d worked in healthcare 20+ years who’d never heard of a PTEN mutation.)
One of the signs or symptoms of CS is a large head, macrocephaly. (NOTE: I can’t tell you how many times Post-diagnosis I’ve asked my Mom, “No one said I had a big head? No one made mention? Anyone? Nothing?”)
I can connect the dots in my past NOW, of course, never finding a hat that fit right, etc etc. Never thinking it was a sign of THIS!
Moving on: I have to now use a sleep mask. I’m not mad about it, I really actually love it now. However, what I AM kinda made about is this Disney sleep mask doesn’t fit! I’ve tried it a few nights already and my temples/forehead pulse and I can’t sleep. This wasn’t a KID sleep mask! It was marketed/packaged as ADULT, meaning one size should fit ALL.
“What brings you in today? I know we just saw you in March.”
W E L P …
I met a very nice hospital employee this morning. I am finding more often I am getting nice ones, which is a huge deal! When you have to interact with a sucky medical employee it’s such a freaking drag!
As I was in the exam room, I began my story:
And the list goes on. I kind of have my “go-to” story when I meet new medical professionals. She was friendly, and I could tell she has been around the block (but I don’t mean that at all in a negative way). She says to me, “I have been around over 20 years and I’ve never heard of PTEN mutation.”
She was nice to let me rant a few minutes about how irritated I am that “everyone” seems to know of BRCA mutation, but no one does of PTEN and it’s JUST AS SERIOUS AS BRCA! (I would like to add here though that any medical condition that causes a woman to be at high-risk for breast cancer is serious, whether it is a 10% lifetime chance or 88% lifetime chance. But, anyway…)
I made it through the appointment with flying colors (haha) and then got dressed and went along my way. As I was going to my car our entire conversation really struck me: How
thankful lucky I am to have been diagnosed as quickly as I was. Can you imagine if I had Cowden Syndrome and yet didn’t know about it yet? Regardless of zero family history of cancer. What about all these women who are getting tested for BRCA mutation and yet PTEN mutation is conveniently being left off? I really feel that Cowden Syndrome really isn’t as rare as the numbers say, and that is paralyzing for those who have it yet either aren’t diagnosed with it, or are diagnosed later than they should be, or have had multiple cancers (breast, thyroid for example) and that is not coming up on anyone’s radar?
Gosh, I could go on and on about this of course. My hope and prayer that at least one person will be educated about PTEN mutations via either my story, or another’s who has found their voice to shout! (NOTE: the employee did say, “Thank you for educating me about that” which was really nice. Those types of conversations really give me strength to keep writing, because validation.)
PS: Please visit my link and consider supporting if you can. Every bit helps! ❤ Thank you. Let’s all bring awareness for PTEN mutations.
There are several moments I wish I could recreate: my high school graduation; graduating from college; the day before my Dad passed away; a trip to California Adventure the beginning of July 2011 where I watched World of Color, and those are just to name a few.
I can absolutely 100% state that there is one moment I wish I never experienced, nor ever wish to experience again.