Hi everyone, I don't have too much to update on since last time, but I've been having a lot of feelings lately and I figured this blog is the place to get them out.
First things first: THANK YOU! I want to give a giant thank you from the bottom of my heart to every single person who reads/shares this blog, has bought a T-shirt or Wristband, or has donated on or shared the GoFundMe site. Your kindness, compassion, and generosity has touched me so deeply, and it is probably part of the reason I find myself in random crying fits this past week.
On that note, I also wanted to give the information again for those that may still want a shirt/wristband or to donate.
Here is the T-shirt Design again, for those that haven't seen it:
Random updates
Not much has happened medically since my last update. This 2nd round of Carboplatin (7th round overall) has been a little worse than the first. I blame it on going back to the 3-week schedule so I wasn't recovered yet.
I got my hearing aids yesterday. They are pretty high tech but wildly uncomfortable. Hopefully I get used to them soon. I haven't been out anywhere to put them to the test yet, but hopefully they will also help me to better hear/understand what people are saying.
The only other thing that happened was that today I got a call from my doctor's office in Louisiana. They took my case to their tumor board, which is a group of top doctors and specialists that discuss and come up with possible treatments for cancer patients. They said the doctor from interventional radiology is interested in my case. He wants me to get a new MRI (I only had a catscan 3 weeks ago) and talk about the potential for liver targeted therapy. I am not sure if it will actually be an option after he reviews everything, or if I will even do it depending on the risks and side effects. But, it is nice to know there may be some other options.
Now, let's get real.
The main reason I wanted to write a blog post today, is because I have been really emotional lately. And since this blog is as much a way for me to remember how I was feeling in the moment as it is to keep all my friends and family up to date, I'm going to let it all out. I feel like all I do is cry every 10 minutes this past week, and if I get it all out on "paper" maybe I can stop. Also, the crying has been causing me to have bad nose bleeds so it really needs to stop.
Since my diagnosis I have tried to put as much of a positive spin on things as possible. I do my best to keep an upbeat attitude. I don't want the time I spend with people to be filled with sadness and negativity. If someone asks me how I am doing, my standard response is fine. Tired, but mostly OK. I guess this is mostly true. I am not in constant pain and I don't have to take strong pain medications. I can shower and use the bathroom and eat without assistance. I can walk, I can talk I can drive. Are those all the boxes I have to check to be fine? If so, then I guess I really am fine.
And sometimes, maybe I really mean it when I say I am fine. But most times, I want to break down and cry. I want to tell them about how stressful this all really is.
About how I feel useless most days, like I might as well be dead because I can't always live my life the way I envisioned it.
About how everyone keeps telling me that I "look great" but I feel repulsed when I look in the mirror and I feel like I just crawled out of a dumpster.
About how everyone says "well, it seems like you're doing really great" but that event I attended for 3 hours and posted tons of pictures of on Facebook last weekend took everything I had in me and I could barely leave my bed (or couch, as I often can't even make it to my bed) for 2 days after that because I was so exhausted.
About how I'm going back to work soon and that terrifies me because I'm pretty sure I'm not ready.
About how I tell everyone that I spend most of my days contently staring at the wall petting my cats, but mostly I'm thinking about ridiculous things and crying. Crying because there have been so many deaths posted in my online support group recently, and wondering if I will be next. Crying because one of my friends wrote something really nice about me on the internet and I feel like I'm not half the person they described. Crying because the money I was saving towards our next vacation went to the mortgage and we maxed out another credit card. Crying because I just decided at the beginning of this year that I really want kids and now I'll never have them. Crying because I probably won't get to see my niece and nephew grow up. Crying because my cats are probably going to outlive me. Crying because of the impact this has on some of my friends and family. Crying because of the stress all of this puts on Alan.
About how sometimes I regret getting married because my husband didn't sign up for this life. That he has to go work and then come home and do absolutely everything around the house while I sit on the couch all day and take care of me on top of it and and it isn't fair. About how sometimes I pick fights with him on purpose, because if I die soon I want him to think about how glad he is that he doesn't have to put up with me anymore instead of how much he misses me.
These are all the things I want to tell people, but don't. So now you know.
Also, I wanted to share some photos from along the way so far.
Hairloss:
I never shared any photos of my hairloss along the way. This photo shows how thin my hair was getting, and what the tub looked like after I washed my hair one day. Also, the first photo right after Alan shaved my head.
Days at Karmanos:
Some days you get a chair, sometimes you get a bed, sometimes Paws comes to visit. Always, you get the poison. The drug that I get pumped into my veins is so poisonous that two nurses have to come in to verify that they are giving the right thing to the right person, and the nurses have to wear special protective jackets over their scrubs when they handle it.
Thanks for reading. Sorry this one was pretty depressing.
#meghanismyzebra
#letstalkaboutnets
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