Life of a Zebra - My Journey with Neuroendocrine Cancer: November 2016

Today on Thanksgiving I am really feeling so thankful that I have this time to spend with family and friends. Last night we hosted most of Alan's cousins plus some friends at our house for a Thanksgiving Eve bash and today we went to his Aunt's house for a big dinner. We will celebrate Thanksgiving with my family in a couple of weeks, when my sister and her family are able to come down for the weekend.

As you can see, there was no shortage of delicious food!

T-shirts and wristbands are in!

I picked them up on Wednesday morning. If you paid for shipping I will be sending them out over the weekend once I go through everything. If you selected local pickup I will be contacting you over the next week or so to set something up.

If you didn't order one, it isn't too late! I have a ton of wristbands left over and I ordered about 10 extra shirts. Contact me if you still want one. They are $5 for the wristband or $20 for the shirt. You can pay via paypal:
www.paypal.me/MegCarter

Medical Updates!

As many already know, I had a scare a couple of weeks ago that landed me in the hospital at Beaumont. I had had a busy Saturday and woke up around 1am feeling funny. My left arm was numb and tingly (not your typical my arm fell asleep tingle) and I was having shooting pains in my shoulder and side. We rushed to the ER because I was convinced I was having a heart attack or a stroke. When we arrived and I described my symptoms that was also the doctor's first thought. I had a complete workup to check for other signs of both of those things, including an EKG, blood work, stroke test, and brain and chest CTs to look for clots. Everything came back normal except my blood work.

All of my blood levels were extremely low; hemoglobin was 5.8, platelets were 17, and white blood cells were 3.0. The low end normal levels for these are 12.1, 150, and 3.3. My magnesium and potassium were also very low. So, I was admitted to the hospital and given electrolytes through an IV as well as 3 units of blood. By Monday afternoon my levels were on the rise and I was released from the hospital. I followed up with my doctors at Karmanos the next day and my levels were even further on the rise. However, it was decided that my subsequent doses of chemo would be reduced, and last week I received round 3 of Carboplatin/Etoposide at a 25% reduction (8th round of chemo overall).

Other than that, I am getting my routine CT next Friday (December 2nd) to see how things are going, I will get the results back on the 7th and depending on the results possibly start round 9 of chemo that day. I am also hoping to get an MRI on the 2nd that can be sent down to the team in Louisiana to determine if I am a good candidate for the Liver Targeted Therapy, but we are waiting on a pre-authorization from my insurance before they can confirm that.

I had to wear a mask the whole time I was in
the hospital because my immune system was so low

Rita and Kal came to visit, and Natalia made me a picture!

At least the hospital food wasn't awful!

Other things going on.

In between all of the medical stuff, I have been trying to live my life as normal as possible. On November 11 I stood up as a Groomsmaid in the wedding of one of my very good friends, Mark, and his now-wife Megan. It was a beautiful wedding and I had a very good time. Except for the part where I fell because I am such a klutz, and bruised my leg. Ouch!

I also had my first few days back at work. I am working 20 hours a week for now. It is going to take some getting used to before I adjust to this new schedule. I have been extra tired the past two weeks because of it.

First Day back at work!

Painted this at Karmanos Art Therapy class!

Lastly, the Go Fund Me page is still up:

http://www.gofundme.com/MegCarter-CancerTreatment

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.

GoFundMe

T-Shirt and Wristband ordering

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.