January 31, 2017 - Good News Updates

Wow, what a whirlwind couple of weeks!

First, a huge thanks for all the birthday love; facebook posts, phone calls, text messages, video recordings, and people who made a point to spend time with me and/or bring me a gift throughout the week. My only regret is that I didn't take pictures of every outing I had.

Summary: (for those that don't have a lot of time to read)
1) Good scan results, off chemo for 2 months, getting a new biopsy, consulting with my NOLA specialist,
2) Got to attend the Dashboard Concert in Detroit VIP style at St Andrews, including chit chatting with Chris Carrabba for about half an hour before the show. It was AMAZING!
3) Some very wonderful people in my life are putting together a spaghetti dinner in my honor. It will be on March 16 at Leon's in Taylor and you can go to the facebook event or straight to the Google sign up form for more information: https://tinyurl.com/FB-MegCarterDinner    https://tinyurl.com/SignUp-MegCarterDinner


Medical Updates: 

On January 20 I went in for my normal routine CT to check the status of my tumors. I went to the doctor this past Wednesday and, as always, I was extremely anxious and every thought in my head was that there is no way this drug combo is still working, I just know it is going to be bad news. So, we go in and my nurse practitioner comes in. First thing she says is ,"your scan results were good, let's just get that out of the way so you can breathe."

So, she tells me more details about the results. No new tumors, none of the existing tumors grew, one of the tumors shrunk from 1.5cm in length to 1.2cm. So basically stable with a little bit of shrinkage. Overall we are probably at around 85-90% shrinkage over the past 8 months, so that is pretty good.

Now we come to the crazy part. They said they didn't want me to get chemo this week as scheduled and instead come back in 2 months for another scan. That was simultaneously the most relieving but also terrifying sentence I have ever heard. My body needs a break they said, I am inclined to agree. But at the same time I am terrified at the potential for growth. These drugs are still working. What if I have new growth in 2 months and these drugs don't work anymore because we stopped? Once you start moving on to new drug combos I feel like it is a slippery slope until you run out of options.

That being said, I have seen several people in my online support group mention that their doctors took them off of this drug that I have been on after only 6 or 8 rounds regardless of it still being effective because it can cause kidney failure. I also have called my specialist in New Orleans to get a second opinion about being off chemo, whether he thinks it is a good idea, what we should do next, etc. I am also going to have a new biopsy in a few weeks to send tissue samples for testing to see if any specific drugs or treatments are a better fit than others.

In the meantime I am just going to try to put my fears aside and live my life, because I should be feeling really great soon (the further out I get from my last chemo) and I want to take advantage of this while i can.



Dashboard Confessional Concert: 

But first, some back story.

For those who don't already know, I have been a huge fan of Dashboard Confessional/ Chris Carrabba for about 14 years now. Friday was my 16th time seeing Chris perform live, including twice as part of his other (also amazing) band Twin Forks, and 3 times traveling out of state for Dashboard concerts. Prior to this weekend I had also "met" Chris 5 other times, 3 times as part of a formal "VIP Meet & Greet" package that I purchased for Dashboard concerts and both times that I saw him perform in Twin Forks. I had a much longer back story typed out, because I could probably write a 100 page book on this music and why I love it so much, but I could hear Alan in the back of my head saying "get to the point" so I deleted it.

Anyway, as I wrote about before, a tour of more "intimate" venues (compared to the arena tours these past two years) was announced towards the end of 2016. I went online to buy tickets the first day, but was appalled at the ticket master fees and told myself I would purchase them at the box office. When I went to the box office (downtown detroit) I found that it was closed (even though it should have been open) and I was unable to get tickets. 2 days later I found out tickets sold out, and I was devastated.

Through a series of emails that started back in December I was eventually put in touch with the tour manager who is out on tour with the band. He was a great guy, got us set up in the VIP area of the venue with reserved seats, and some time to meet Chris. I wasn't really sure what to expect; when I had met Chris previously it was always one of those situations where you have a ton of other people waiting behind you so you pretty much have time for a smile, a handshake, a signature, and a photo. This was totally different. We got to go to the dressing room, sit on some comfy couches, and just talk for almost half an hour. At first I was so nervous. What do you even say to someone who has written and sung with such emotion these words that have had deep impact on your life? But Chris made it so easy. He is such a kind, genuine, and down to earth person. We just started talking and soon  I forgot I was talking to this super famous person that I've admired for so long, and it was just like talking to an old friend. It was absolutely the coolest thing that I have ever done.

Here is a picture of us with Chris, as well as a video Alan happened to be recording when Chris gave us a shout out from the stage between songs (listen to the part between 10 and 20 seconds). It was so awesome! I cannot thank Chris and his tour manager Mike enough for such a great night!

Spaghetti Dinner: 

Some really awesome people that I am extremely fortunate to know are getting together to put on a Spaghetti dinner fundraiser. The event is going to be March 16 and there are two dinner slots you can sign up for. Tickets are $20 in advance by paypal/check or $25 at the door. PLEASE NOTE: You have to also click through to the google form to reserve your specific dinner time slot as well as for pay in advance instructions (paypal or check). An RSVP via Facebook will not reserve your spot.

View the Facebook Event here: https://tinyurl.com/FB-MegCarterDinner  

Sign up and reserve your spot here: https://tinyurl.com/SignUp-MegCarterDinner

January 5, 2017 - Do you like dreaming of things So Impossible?

I want to start this blog on a few positive notes. If you read nothing else of this blog, I hope you at least read these. 

1) I turn 33 today! Just 33 weeks ago, I was undergoing the "staging" process of having additional scans and tests after my diagnosis, and I honestly didn't think I would be around to celebrate this birthday, so I am extremely thankful for my doctors, modern medicine, and the love and support and prayers of all of my family, friends and co-workers. 

2) On the Monday before Christmas my wonderful friend and co-worker Alexis sent out my story, blog, and fundraising page to our Risk Assurance practice in Detroit. Within less than 24 hours the amount raised on my GoFundMe page nearly doubled, and additional donations still continue to come in. I am so overwhelmed by the support and generosity of my work family. Because of this, I was able to pay off my Karmanos balance of around $4,000 in FULL! This is such a great feeling!!! I am currently paying off some of my smaller balances with labs, individual doctors offices, and my doctor in Louisiana. My balance with Beaumont is also around $4,000 and they have sold it off to various collection agencies over the past couple of months, so I need to gather up all of that information. 

3) Alan and I were able to celebrate a combined Thanksgiving/Christmas with my family on December 16/17, Christmas with his family, and New Year's with family who are also amazing friends and great friends we consider family. We were also able to spend time with other friends/family who visited from out of town during the week between Christmas/New Year. All of this was able to happen without me having any major health issues. All of the functions definitely wore me down, and I slept til 1pm or later almost every day on my one week work break, but I was so happy to be able to celebrate all of these occasions in a relatively healthy manor, constantly surrounded by people I care about. 

4) Extra special thanks for making the past 4 weeks memorable goes out to Christen and Dave for hosting Ugly Sweater Party, my mom, Phil, and Lauren for hosting Thanksmas and Kathryn and Gordon for making the long drive so we could all be together, the Alitawi's for fajita/netflix night and impromptu sleep over, Alan's parents for Christmas Eve and his Uncle George and Aunt Nadia for Christmas day. To Bob for hosting multiple game nights and kicking off our NYE, to Mark, Emily, Amanda, and Dustin for for making time in your very short and packed schedule to see us while you were here and Cassie for hosting the lunch "after party". To Jeff and Anna for dinner and spending time with us while you were here (Congrats again!), to Kelley and Kristine for long talks about everything and nothing and for always being the best friends ever (and Kelley and Ryan for going along with all our NYE plans), and to Kal and Rita for hosting the moment that rang in 2017. Love and appreciate you all more than words can express.  

On to other thoughts and random things. 

I've been spending a lot of time reminiscing lately. Reading my old Live Journal entries circa 2005-2007 (these things exist in perpetuity, people!), poems I wrote, listening to old favorite songs and finding new meaning in them, etc. 

The title of this blog is a lyric from my all time favorite song, on my all time favorite record, by my all time favorite band/musical type person. In the past I identified with it on what was probably the intended level, wanting to find that perfect person to share my life with. Now, I interpret it and apply it to my life in a different way. I already found that perfect person, now I am dreaming of other things that seem so impossible. 

As a funny tidbit, one of the Live Journal blogs I was reading today was from February 2007. I was lamenting on how awful my life was at the time (p.s. I'm sure it probably really wasn't) and how I had been trying so hard to "make lemonade" of the lemons I was dealing with. And then, just when I thought I was coming to terms with what every "tragedy" I thought was occuring within a week's time span, I found out from the news that I was losing my job in 90 days , my car caught on fire, and my foot got slammed in a car door. And I thought THAT was the worst thing that could ever happen to me. Right now, I would gladly sacrifice my job, my car, and my foot to not have cancer anymore. 

Not many relevant or important medical updates. I had a round of Chemo December 7-9 and started another round yesterday. Round 10. After tomorrow I will have had 30 total infusions of chemo. That is a month worth of days sitting in the chair, having the poison pumped in. Hopefully it is still working, we will find that out in 3 weeks. Since I have been on this type of chemo so long there is a higher chance that it will stop working, so I am being tested after only 2 rounds instead of 3. My scan will be on 1/20 and my results will be on 1/25. 

As far as things with my doctor in New Orleans go, we are still waiting on insurance pre-authorization for an MRI so that we can discuss some sort of liver targeted therapy as an option. Since I have my CT scheduled in 2 weeks I called to follow up today. They decided that for now I should just send my CT results from December 2 as well as my CT results when I have it done on January 20. They are still at a stalemate with the insurance on getting coverage for an extra scan. 

Physically I am not doing too bad. I haven't really had any severe symptoms or side effects since early December. Mostly just the never ending fatigue, occasional breathlessness, headaches, etc. Yesterday I found out I gained 10 lbs since my last visit in December. Everyone there seemed to think it was not a big deal, that I need to keep my "strength". But seriously, I thought chemo was supposed to make me lose weight? 

Mentally I am doing mediocre. Random conversations with family and friends that don't involve me having to rehash every detail of my disease over the past 12 months are uplifting. I like it when people ask me specific questions, like "what are you doing next weekend?", "did your cats do anything funny lately?", "what kind of ice cream did you eat today?" Those are much better than a generic "how are you?" that always seems to have a hidden "please reassure me that you aren't dying" hidden behind it. To combat some of my sad sack emotions I've been going to as many of the Healing Arts programs offered at Karmanos as I can. There was a break in events over the holidays, but I did massage, yoga, and a couple of panting events before Christmas. I also had a really long and enlightening talk with my social worker yesterday. That woman is seriously amazing, and I am so thankful for everything she does to keep the programs running that she does. 

Random - My hair is growing! I even had to shave my legs this week, for the first time since June!! Here are some fun pictures I took while at my chemo appointment today. 

 

 

I really need a pick me up. A trip to somewhere warm and tropical would be nice, but is out of reach at the moment. I was also really looking forward to seeing Dashboard Confessional on their upcoming tour, but that may be out of reach as well. I didn't buy tickets when they initially went on sale, because I thought a $12 ticket master fee on a $27 ticket was outrageous. I planned to buy them at the box office with no fees, but the box office was not open during the times clearly stated on the venue website and when I checked online the following week they were sold out. Tickets on Stubhub are currently hovering around $50. 

I have considered going out of town to see a show that isn't sold out. Denver is one option, flights are cheap and my awesome cousin Jacob lives there who I could likely stay with. But, it is hard to make advance plans for travel when you just aren't sure how you are going to be feeling. And I have chemo the week immediately before that concert, so it is improbable. There are also options in Ft Lauderdale and Tampa in February, that also have below-$100 flight prices, but they fall during the week of chemo :( I did do some investigating and find out who the booking agent is for the band and emailed him before Christmas. I just got a response back on Tuesday and they are forwarding my information to the people who are more involved in the day to day of the current tour to see what they can do. So, maybe I can get into the Detroit show after all! 

Well, not much else to update on for now, probably will update again in about 3 weeks after my scans. Thanks for reading, and for the constant love and support!

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