…to say, “I’m tired. It’s hard. I am scared. I am alone. I am struggling” because, let’s face it. That’s pretty much the entire theme of this blog and I have pretty much got that covered. If it can be said, I probably have already.
But part of the reason I continue this blog is so that if anyone happens to find it who’s tired, scared, or lonely too, will know they aren’t alone.
Here’s some things going on here as of late:
- Our refrigerator broke. We have been living out of a cooler for dayzzzzzzzzzz.
- I’m dealing with daily migraine headaches
- I was rear-ended last week while I was in my car, parked. Thankfully there wasn’t any damage to my car and I am feeling better now
- The unstable man at the doctor last week is still on my mind. That incident changed me.
- My passenger side car door was dinged by an older man. When I got out of my car to check if there was any damage, he started to verbally assault me in the shopping center parking lot. Thankfully there were several people around who saw the incident and I thankfully had my cell phone in hand. When I started to take his picture he quickly de-escalated.
- I haven’t done my taxes yet
- My car needs some desperate work to it
- I had my mammogram yesterday. Those days are always heavy on my heart. 85% lifetime risk of breast cancer never gets any less scary.
- Out of the 2 pairs of jeans I own, one of them is coming unraveled. It’s quite funny. No, not funny – sad.
I can go on. But, I won’t. That’s enough for me. For today and hopefully tomorrow.
I have tried to do these things in the past, but since I’m not a writer I don’t do them all that often. I wish I was a writer, and could write eloquently and express the things in my heart. I usually just mush everything and end up writing the way I speak. #fail
Anyway, I saw the prompt for today and it resonated with me. Time to pick it up and be the Blogger I only dream about! 🙂
For years after diagnosis, I resisted everything. I don’t have brain tumors. I don’t have a rare hereditary cancer syndrome. I don’t have to go to the doctor all the time. I’m not high-risk for breast cancer. These brain tumors will not grow. Resist. Resist. Resist.
Only today, almost 6 years after diagnosis, am I starting to get a glimpse of acceptance. Resistance is futile. Especially when you have a sketchy medical status. I can no longer resist what is.
I have 2 brain tumors. I have Cowden Syndrome. Resisting the reality of that is a recipe for disaster. My life has been a disaster and continues so.
Today, I tell you I will try harder. I will do better. I will stop resisting.
One of the bad things about Cowden Syndrome is that if you see something odd on your body, it’s a struggle to keep your mind from going to the bad place.
And by you – I mean me.
I have an 85% lifetime chance of getting breast cancer. I really hate those odds.
- In the shower just now, I found something on my breast I’ve never noticed before.
- I keep telling myself, “It’s just dry skin. It’s ringworm (ew). It’s nothing.”
- Don’t overreact. Don’t cry wolf. Let it go. See how it is tomorrow.
- But what if it IS something? I can’t ignore odd things popping up on me. That’s the epitome of PTEN mutation. Lumps & bumps.
I hate to seem like I’m crying wolf though. And, what if I can’t see clearly through my own eyes?
Yesterday morning I had another scan. I wish I knew how many I’ve had since diagnosis. (I bet it’s 10X more than I think.) You know, I
think hope wish that every time I go it’ll get easier. It doesn’t.
I have to ask the MRI technician every time the following questions:
- What if there’s a power outage while my scan is happening?
- What if something happens to you while it’s happening?
- What if there’s an earthquake while I’m in there?
- What if there’s a natural disaster? Or an emergency at the hospital while I’m in there?
The technician is pretty funny; he knows me by name and me him. He always talks me off a ledge, which I appreciate. Plus, I’m usually medicated so that helps 150%, too.
I practiced my visualization: I am at Disneyland. I am at the front entrance getting my ticket when the scan begins, then I start to make my way through the entire park. (It’s a neat little tip that works for me!)
Just like when I see the oncologist for my breast exam and think, “Is this the day she’ll find a lump?”, I found myself thinking yesterday, “Is this the day there will be growth on either tumor?”
We shall see.
I know how important it is to have a grateful heart. I read about it all the time. And, especially this time of the year it’s vital, right? With that being said, I could start this post with all the things I am worried about:
- My brain
- No income to cover my bills; being destitute sucks and is so scary!
- My gait
- My health (covering it all)
- My future (which will be covered in another post)
- Status on Disability
- My car
- The next colonoscopy
- The next EGD
- The next mammogram
- The next breast MRI (if I can fit into the machine)
Or, I could make a gratitude list. We have all heard about them, right? Have you ever made one? I invite you to leave in the comments one thing you are thankful for, especially this weekend. Here are just a few of mine:
- My nephews
- Modern medicine (where I can have 2 craniotomies a week apart and be here to talk about it!)
- The Internet (where I can connect with others who are living with Cowden Syndrome and Lhermitte-duclos Disease)
- My cats Kona and Tigger
- Same car (as above) – thankful it presently runs
- Hearing the birds chirp in the morning
- Food in the cupboards
- Water to drink
- Books to read
This list isn’t all-inclusive; I could go on and on. But, I knew it was important for me to get a few things written so I have them to look back on. This Thanksgiving was different for me. It wasn’t ideal; it wasn’t the one I would have planned; I would have preferred to do something different. But, that wasn’t in the cards. I tried to make the best with what I had.
Funny. I could say that exact, same thing about my life now with Cowden Syndrome and Lhermitte-duclos disease: it’s not ideal; it’s not the one I would have planned; I would have preferred something different! How ironic is that?! Gosh. As time goes on, and as I continue to write, I see more of these analogies of my life. But, here’s the most important line and I almost skipped it over. I tried to make the best with what I had. Presently, that’s really hard. (See worry list above). I didn’t know how to navigate my life very well before CS and LDD, and look at all that’s on my plate now! Sheesh.
Well, I began this post wanting gratitude in my heart. I am grateful for all of you who follow me on this rare disease road, who pray for me, who are my cheerleaders. I wouldn’t be where I am today without you.
Have you heard of the BRCA gene? Have you heard of the medical decisions Angelina Jolie made a few years ago? If you’re on Twitter, I can tell you there is quite a lot of discussion about BRCA and hereditary breast cancer. However, there isn’t much about PTEN mutations, and I want to change that. Granted, PTEN is rare and doesn’t occur as often, but it’s just as serious. I carry a “faulty” PTEN gene, which also increases my risk for breast cancer, not to mention many others.
I am very excited to share this from My Gene Counsel and I hope you will take a look at this link.
I am really thankful that a few more people have reached out and shared their Rare Disease story with me. I am so blessed to have this blog and to be able to share my story with others! Heather agreed to do a Guest Post for my blog and I’m so excited to introduce her to you. Besides our name, she and I have a lot of other things in common too! Most notably Lhermitte-duclos Disease: it’s very rare for me to connect with others who have LDD. If you would like to contact her on you can do so here. Please meet Heather!
I was born with a large head which was the beginning of my medical drama. I had multiple surgeries during my school age years to remove benign tumors. When I was in 10th grade I started getting headaches and double vision. It took the doctors a couple of weeks to figure out what was going on but eventually I was diagnosed with a brain tumor. I had brain surgery within the week. The doctors could not remove all of it because it was wrapped around my brainstem. The preliminary pathology report was brain cancer. After a week we got the final pathology report which was L’Hermitte Duclos. I was also told that I probably had Cowdens Syndrome because of all my surgeries and the fact that I had a large head. My world changed in a big way. I went from having no problems in school to having a learning disability. No one could tell that anything was wrong with me unless I got overly tired or stressed which unfortunately happens a lot in High School. I needed a second brain surgery when I was in College because the headaches and double vision returned. The doctors removed what they could and I continue to get follow up MRI’s. Thankfully things have been stable now for almost 18 years!!!
Two years ago I was diagnosed with breast cancer. I found out after the fact that I was at an increased risk for breast cancer due to the Cowden’s. I was asked if I wanted to undergo genetic testing during this time. I was told that I met all the signs and symptoms for Cowden’s Syndrome but they could tell me officially if I had it. At first I did not see the point in paying a lot of money to find out that I officially have Cowden’s. I ended up getting tested because my sister had just gotten married and wanted to know if she had it. It was easier for them if I got tested first to see where the mutation was. So last year I officially was diagnosed with Cowden’s Syndrome. I had to have a hysterectomy 4 months ago because of complications from the breast cancer and having Cowden’s. Currently, I am dealing with cognitive side effects from having two concussions two months apart. The doctors tell me that my case is different from most people because I have had two brain surgeries too.
Having CS and LDD is not fun as all of you know but I am doing the best that I can. I try to take one day at a time and do the best that I can with what I have. My mantra is “In life, you can only play the cards you were dealt.” I get tired of always having something wrong with me so I tend to push through things so I can continue to do the things I enjoy. I may have a rare genetic mutation and a complicated medical history but it is not going to define who I am.
Today’s appointment wasn’t too bad, if I’d thought better about it I would have known today wasn’t going to be all that major. But, still. Everything about Cowden Syndrome is major, so what the freak do I know about all these appointments, anyway? I guess my point is I shouldn’t be downplaying my emotions. I’m deserved of a freak out day every once in a while. Anyway, on to today:
Basically today’s appointment was to check in and make sure I wasn’t falling through the cracks with paperwork, referrals, approvals, etc. on the esophageal mucosal resection (or, getting a 2nd opinion on my esophagus and innumerable polyps.) So, nothing really happened today. 🙂 Whew! Doesn’t mean that I’m out of the woods and I know that, but I did work myself up for nothing. Eeeesh. Oh well, at least I know that this oncologist is working on keeping the ball rolling on my behalf.
Another thing I forgot to write about was this test I am having next month called a PEM scan. Dr. S said this is kind of a “two-for-one” scan because while it checks my Dairy Queens for cancer, it also checks my entire body. And, we can’t forget that I’m 85-something % lifetime risk of breast cancer. So, while some doctors may say, “esophageal cancer isn’t on the books” (which the first G.I. doctor did who didn’t even want me to have the freaking EGD in the first place!) we just can’t forget. Cowden Syndrome never lets me forget cancer. Never let’s me forget anything, really. And, just because there’s “not a lot of data” on esophageal cancer doesn’t mean I won’t/can’t get it. It just means it’s not too common. And, we all know what that means. Wait. I don’t even know what that means. No one knows what anything means with Cowden Syndrome. I just do the best I can with what I have. Plain and simple. So, please. Bear with me when my emotions go up and down…I’m trying.
And all this means I’m due a freaking vacation.
Is there ever going to be a time in my life where surgery isn’t up for discussion?
I really don’t know what to do. I have had most of the “main” surgeries associated with Cowden Syndrome (thyroidectomy and hysterectomy). But, there’s another one: double mastectomy.
If you were high-risk for breast cancer and were told there’s no “if” but “when” you will get it…what would you do?
What could you do? The data “says” that I have an 85% lifetime risk to get breast cancer.
Yep; you read that right.
It’s on the table again. It’s on my mind again; however, was it ever off my mind?
I think I have (had?) convinced myself that every 6 months for the next 10 years (ish) of my life I would (could?) worry about my Dairy Queens? Breathe a labored sigh of relief after every “normal” mammogram, but still hearing “dilated ducts” and wondering what the eff that means? Alternating between a mammogram and another sort of test (ultrasound, MRI), and don’t forget the clinical breast exam kickers.
I can’t do this.
But, I can’t keep doing this either.
How do I make this monumental life decision alone? How do I prepare for any and all mental ramifications if/when I decide to do this “next” surgery?
Some weeks are Cowden Syndrome and Lhermitte-duclos-free. Other weeks I am slammed with several appointments all in a row and I’m reminded that my life is different and this is my new normal. I think it is a tad easier to accept these things that I do not like. Maybe I’m getting tired? Or stronger? Or maybe it’s that I have realized that in this “new normal” there are other things I can focus my energy on? (Volunteering at the animal shelter?)
I haven’t yet written about what happened at the breast MRI appointment; I’m embarrassed to say the least. Suffice to say I didn’t get the scan as I needed to. So, my poor oncologist has been forced to find another option for me to check my Dairy Queens in the meantime, so that we “don’t miss anything”. (Quotes added but inferred by both she and I.) Tomorrow I have a mammogram and then if need be, followed immediately by a breast ultrasound. Let’s hope, as always, for NO WHAMMIES and big money…I have had the ultrasound before and it’s not. fun. But, we’ll see. We will see. Whatever it is it is. I’m not nonchalant about breast cancer or the possibility of it, but I just realize that I have to do all these things. I have to go to the doctor, go to the hospital. go here and go there because “they” want to make sure I am being watched closely. THAT, I get. And, I’m thankful for. Doesn’t make it any easier, it just is what it is. Does this sound like growth? HA!
Friday I have a brain scan and then the appointment with the oncologist. I have noticed that I don’t seem to be as dizzy lately, which is interesting because we had to decrease the Topamax because of the side effects I was experiencing. But I have noticed something that is concerning, but nothing I can do about this either: I don’t really struggle when I am talking to someone, maybe every once in a while maybe I will switch a word or two but nothing too big. Getting the information out of my brain in one direction is OK. But what HAS been a problem as of late is when I have to do that in several steps. Meaning: When I am subbing or teaching or reading something…getting and processing information from Point A, then to my brain, then OUT of my mouth in coherent words is hard. Frustrating, difficult, confusing, not easy. And, plain ‘ole not fun. I noticed this last month when I was at church. I powered through, because there is no other option, but man it was harder than I wanted it to be!
Isn’t that how most of feel at times about life? That it is harder than we want it to be? Sure, I don’t want brain tumors and high breast cancer risks. I would rather be carrying my Fossil bag at Disney World enjoying the park! 🙂 But, I’m not. I’m navigating slowly this rare disease life. It’s much harder than I want it to be, but if I wasn’t on this road, I would not have met the people that I have. I wouldn’t have this blog, either. I realized that’s kind of a big deal, too.