It has been a really long time since I updated this blog. I think about it often, but medically speaking nothing has changed in 10 months, so I haven't had the motovation to write.
As anyone who follows me on Facebook knows, today, November 10 is Neuroendocrine Cancer Awareness Day. My friend, and a huge NET/NEC Awareness Advocate, Susan started an awareness campaign leading up to November 10, and is challenging someone new each day to share their story, from early symptoms to diagnosis, treatments, and current updates. I was nominated as part of Day 2, and thought my blog was a great way to do this.
(Sorry Susan tjat it took me 5 days to write this!)
First things first, if you're new here you may be wondering what the heck does neuroendocrine cancer mean. What is NET and NEC? Even if you've read my blog before, I fear there may have been some misinformation back then, as I was so new to all of this and didn't quite know all the right terms.
Neuroendocrine Cancer is different from other types of cancer because it is not named by body part. Neuroendocrine Tumors (NETs) can originate from many places in the body, usually hormone producing organs. The primary tumors are frequently found in places like the intestines, the lungs, the pancreas. Some people don't even know what body part it originated from. But regardless of where the tumors are at, it is called Neuroendocrine Cancer. Tumors can also be low, intermediate, or high grade based how aggressive they are. This is measured by something called a KI67. Anything greater than 20% is considered high grade, also refdered to as Neuroendocrine Carcinoma (NEC).
There are many more nuances to the overall dianosis, such as staging, grading, small/large cell, and poor/well differentiated that I won't get into here in the interest of time, space, and the risk of being medically inaccurate. For more information on Neuroendocrine Cancer please visit:
The Healing NET:
https://www.thehealingnet.org
Neuroendocrine Cancer Awareness Network:
http://www.earnyourzebrastripes.org
Now, for my story.
In the fall of 2015 I started having weird episodes where my face would get numb and tingly and then i would get a bad stomach ache with diarrhea. In mid-January of 2016 I had one of these reactions, but it was much more severe than any previous one. I had been working late and the episode occured after eating a peanut butter cookie. It was so bad that a coworker had to drive me home. From this point forward, i had a pain in my left side that just didnt go away, no maater what i did. Every day I would have symptoms ranging from mild nausea and discomfort to severe stabbing pains.
After about 2 weeks of this I finally gave in and called my doctor. It was a local private practice in Royal Oak that I chose for proximity, and I really had only been to see the guy maybe twice for a sinus infection in the past year.
On the first visit he seemed super unconcerned about the occasional episodes of face numbness and told me I had IBS and just needed to drink more water, eat more fiber, and move more. I started making a conscious effort to take a lap around the office every so often when refilling my water, and i started eating more fruit and taking fiber supplements. At the end of 2 weeks I was doing much worse.
At this point the doctor started to take the face tingling reactions more serious and suggested I could ne developing an allergy. I was starting to come to this conclusion on my own and had identified peanuts as a potential trigger. My doctor on the other hand seemed to think dairy and gluten. So imstead of sending me for an allergy panel, i was sent home to do a 3 week gluten and dairy free trial.
I asked the doctor what I was supposed to eat (gluten and dairy are in EVERYTHING!) he promised to send me over some information. Instead, he sent me information on a costly weight loss program he runs at his office. I felt like he was essentially saying to me "lose weight and you'll be fine" and so I never went back to see him after that. I did attempt to avoid dairy and gluten for about 2 weeks and I continued to get sicker. At this point I scheduled an appointment with an allergist and was tested for over 50 food allergies, all of which were negative.
It was now late march of 2016. I was doing awful. I was in pain every day and barely had an appetite. I had fired my primary care doctor and tested negative for food allergies. I had my annual physical coming up in about a month (we get an "executive health exam" through work every year through a specific provider), so my plan was to basically try to tough it out until then to see if the doctor there had any ideas or suggestions on a new doctor for me to see.
In early April, though, I ended up in the ER. I was having one of the face tingle episodes along with heart palpitations and shortness of breath. I told Alan that I was afraid that if I went to bed I wouldn't wake up.
Once at the Beaumont Royal Oak ER I was worried they were going to give me pain meds and send me home. So, I refused their morphine drip even though my pain was at about a 12/10. I said I don't want you to make the pain go away right now. I want you to figure out what's wrong and fix it!
They did some standard work up and decided that I should have an abdominal scan. I had a CT and they said that it showed a blockage in my colon as well as some "lesions" on my liver. They kept mentioning how "young" I was, as if it were some miracle protection against any serious disease. They decided I should be admitted for some further testing and started me on IV antibiotics because they suspected diverticulitis. I had a colonoscopy while admitted and they biopsoed some tissue but found everything normal. They said the colonoscopy confirmed the diverticulitis. They never directly addressed the lesions on my liver. They said it was probably just fatty liver, normal, im so young no real reason for concern. But they wrote me a prescription to go get an outpatient MRI "if i wanted to" to get a better look and confirm and sent me home with more antibiotics and some medication for acid reflux.
Getting the MRI was a challenge. My first appointment got cancelled due to insurance denying pre-authorization. Also, I was feeling much better now. As far as I could tell the antibiotics had cured everything. So I almost didn't fight them on it. But then a couple days later i woke up in pain again, so I did.
Finally I got approved and went for the MRI. This was around the first week of May. Two days later the doctor I had seen in the hospital called me. The spots on my liver were bigger now, compared to just 3 weeks ago in the ER. They could also see a mass on my pancreas that wasnt visible on the CT. He wanted me to come in for a biopsy as soon as possible. At this point, i should have known that it was definitely cancer. But instead I allowed myself to live in denial for another week.
I had an ultrasound guided biopsy, where they use an ultrasound to find the spots on the liver then use a needle to pull out some samples. I had this done on a Monday or Tuesday and waited anxuously for the results all week. Friday morning the doctor called and said the final results were still pending, but he wanted to set me up with a consultation with a liver surgeon for Monday. Finally, around 3pm on Friday, May 13, 2016 the doctor called and told me the results. The biopsy showed that the spots on my liver were malignant. They were poorly differentiated, small cell, neuroendocrine tumors, they think it started on the pancreas. They call it pNET he said, but don't google it over the weekend.
After a difficult weekend of breaking the news to our families, on Monday morning we headed off to Beaumont to meet with the liver surgeon. He essentially says right away that there is nothing be can do for me, because my tumor is something they call "high grade" and this means it cant be operated on. No real explanation of what that meant or why. But he had gotten me an appointment right away with an oncologist and walked me over to her office.
The oncologist was nice enough but she seemed terrified of me. I felt like she was going to start crying, she barely made eye contact. I won't even repeat some of the things she told me about my disease, because I have since found out they werent true. She set me up with appointments for the rest of the week: a port in my chest, a brain mri, a pet scan. And I was to start chemo the following monday. I dont even remember what kind, because it was the wrong kind. She was setting me up to receive the drugs for pancreatic cancer.
Luckily, we ignored some of the doctor's advice and started googling neuroendocrine, nets, pnet, etc right away. We stumbled across the NCAN website which listed Dr Philip at Karmanos as the only specilist in Michigan. Luckily, he was able to see me that first week before chemo. The first thing he told me when he walked in the room was "i reviewed your files. These are not the right drugs" he told me that the standard protocol for someone with high grade neuroendocrine cancer was Cisplatin and Etoposide, and that if I wanted to be treated there, they could still fit me in on Monday morning. I would receive both drugs, plus a large amount of hydration fluids over about an 8 hr period on the first day, then just the Etoposide and a little hydration over about 2 hours on the next 2 days. Then we would repeat this every 3 weeks for 3 cycles, before another scan.
When I first started chemo, the side effects were mild. The first week would be really bad but then I would feel better than I had in almost a year for almost 2 weeks before going back. Towards the end of July, I had my first follow up scan. It showed about 50-75% shrinkage of most tumors. My doctor recommended 3 more cycles before another scan.
During these next cycles we did more research. We found out about a patient conference in New Orleans and that one of the top neuroendocrine clinics in the country was also located there. We were able to get an appointment there for the week before the conference, and also got a travel grant for the conference itself. The timing was lined up so that this was all around the time i would have finished my 6th round of chemo and had my second scan, at the end of September 2016.
Unfortunately, the chemo really started to take its toll during rounds 4 and 5. I had developed severe ringing in my ears and some hearing loss. And by the time I went in to receive round 6, i could still barely get out of bed. At that point my doctor decided to delay my next treatment by 2 weeks, which also allowed me to recover more and feel better for new orleans.
In new orleans i received something called an O scan (now an outdated technology) to see if i had receptors that could open the door to additional treatments. I didn't have them. The doctor in New Orleans essentially agreed with my existing treatment plan, with the exception that I should switch to Carboolatin (a slightly less toxic platinum based chemo therapy than cisplatin) for round 6 and forward.
When I got home from New Orleans, I started the carboplatin. I also received hearing aids to help with my hearing loss (spoiler alert: they didn't solve my problems with distinguishing sounds) after the first round of carboplatin I had my scan and it showed a few small reductions in tumor size, but the difference was nothing compared to the results after the first 3 rounds. My doctor decided again on 3 more cycles and a scan.
After the next cycle (7th overall, 2nd after carboplatin switch), I ended up in the emergency room. All of my blood counts were extremely low, and I ended up getting a transfusion. After this, my doctor decided to reduce my dosage by 25% for future cycles and also move my next scan up by one cycle.
So after Round 8 (Round 3 of Carboplatin) I had another scan. This one showed even less shrinkage than the previous scan, but shrinkage nonetheless, and no growth. After 2 more rounds and another scan, near the end of January 2017 my doctor said that the tumors were "stable". This means that they didn't grow but they also didnt shrink. At this point he recommended that I stop chemotherapy for 2 months and see what happens.
This began a terrifying time for me. Even more terrifying than being told that I had cancer, was the suggestion that I should do nothing about it.
During this 2 month break I also traveled to New Orleans again to see what the doctor there thought. They agreed at that time that there was no way to know if the chemo was actually keeping the tumors stable, or if they just were stable on their own. Stopping the chemo was the only way to know.
So I had my 2 month scan in March, and another 2 month scan in May. They were both stable. At this point, I decided to seek an appointment with THE top NETS doctor in the country, Dr. Liu in Denver. It takes a while to gather and send all of your information and get an appointment, but finally I got one for mid-September 2017.
Just before I went to Denver I had another scan. At my appointment, my doctor told me all was stable and we scheduled the next scan for December. Then I get the written report. It mentions a small lesion on the lower left lobe of my lung. I talked to Dr. Liu about this in Dever. He said with it being so small (he couldn't even find it when he pulled up the scan images) that it could be anything. It could be a tumor but it also could be inflamation. The only way to know for sure was to wait and see if it grows on the next scan. Dr. Liu's only recommendation was to switch to PET scans from CT going forward.
So here we are. It is November 10, 2017. It is NET Awareness Day. In 3 days it will be 18 months since I received my diagnosis. To the outside world, it seems like everything is back to "normal". But life is far from normal. I live with the consequences of this disease every day.
The lasting effects of chemo are nothing to be taken lightly. I still experience extreme fatigue. Some days are better than others and some days it hits me like a semi truck. If you see me out doing something "fun" chances are i stayed in bed most of the day before and will stay in bed the day after.
The brain fog is difficult to deal with too. As if I didn't have issues with concentarion and memory before, this is only exacerbated now. Prior to cancer and treatment, for all my scatterbrainedness, I could at least say I was smart. I could at least say that I learn new things quickly and excel in them. But now, I don't. It has made life, and especially my job, very difficult.
Then there is the paranoia that comes with pain. Over the summer I had a headache for about 48 days straight. I think I called my oncologist at least 12 times convinced I now had a brain tumor. We did a head MRI, I didn't. Or the days i get sharp, stabbing pains in my stomach or in the spots where I know my liver or my pancreas are at. Pains that make me feel like i am re-living the spring of 2016. Are those my tumors, taking this time between scans to grow and spread? What about the sharp pains in my chest that I get almost daily, that my doctor says is costochondritis (inflamation). Is it? Or was that teeny tiny spot on my last scan a tumor? Is it there? Is it growing? I guess we wait and see.
So that's my story. If you took the time to read it, thank you. Please spread the word and help to raise awareness for Neuroendocrine Cancer.
Friday, November 10, 2017
Friday, March 24, 2017
March 24, 2017 - Stability
I cannot start this post any other way than to give a big, HUGE thank you to everyone who was involved in any way with the Spaghetti Dinner last week. WOW! We were so overwhelmed by the outpouring of support from friends, family, and strangers. The event was an overwhelming success and I really cannot thank everyone enough.
First, an update on the TACE procedure. For now, I have decided not to get it. Alan and I talked about it with each other. I talked to some people in my support groups who have either had it done or had it recommended, and I talked to my doctor at Karmanos about it. Most importantly of all of these things, my doctor here thinks it is an incredibly bad idea. He thinks the potential for damage to my liver is too great. He even had the interventional radiologits from his team take a look at my most recent scans and give an input. They said that the tumors are very small and the arteries would be hard to get to. Some of the tumors didn't even have their own artery they said. So basically, we felt the potential good of the procedure did not outweigh the potential bad.
Now, on to the good news. According to the doctors, my scan in March was exactly identical to my scan in January. This means that I have been off chemo for a little over 2 months and my tumors haven't grown at all! They also didn't shrink, but at this point just no growth is very good. Because of that, I get another 2 month break from chemo, which is super exciting.
Another really cool thing, on the same day we found out the good news we just happened to stumble across this music festival that is happening in Buffalo, NY in June. Not only is Dashboard Confessional playing at this show, but Alan's faborite band, OK Go, is also on the list of performers. We are planning to go and hopefully I will get good results again at my scans in May and still be off chemo at that point.
Not much else to talk about right now, it is just time to try to do some living.
First, an update on the TACE procedure. For now, I have decided not to get it. Alan and I talked about it with each other. I talked to some people in my support groups who have either had it done or had it recommended, and I talked to my doctor at Karmanos about it. Most importantly of all of these things, my doctor here thinks it is an incredibly bad idea. He thinks the potential for damage to my liver is too great. He even had the interventional radiologits from his team take a look at my most recent scans and give an input. They said that the tumors are very small and the arteries would be hard to get to. Some of the tumors didn't even have their own artery they said. So basically, we felt the potential good of the procedure did not outweigh the potential bad.
Now, on to the good news. According to the doctors, my scan in March was exactly identical to my scan in January. This means that I have been off chemo for a little over 2 months and my tumors haven't grown at all! They also didn't shrink, but at this point just no growth is very good. Because of that, I get another 2 month break from chemo, which is super exciting.
Another really cool thing, on the same day we found out the good news we just happened to stumble across this music festival that is happening in Buffalo, NY in June. Not only is Dashboard Confessional playing at this show, but Alan's faborite band, OK Go, is also on the list of performers. We are planning to go and hopefully I will get good results again at my scans in May and still be off chemo at that point.
Not much else to talk about right now, it is just time to try to do some living.
Monday, February 20, 2017
February 20, 2017 - NOLA Updates
As I mentioned in my last post, I put in a call to my doctor in New Orleans to get his take on my local oncologist's decision to take me off chemo. We were able to get an appointment for February 9 and headed down there on the 8th. They also wanted me to meet with the interventional radiologist to discuss some possible liver targeted therapies and we got that set up for February 14.
Coincidentally enough, Dashboard was playing their NOLA stop of the tour on February 13 at the House of Blues. So guess where we spent that Monday evening??
The appointment with Dr. Ramirez went fine. He agreed with me that it was a risk to be off of chemo, but also agreed with Dr. Philip that it was becoming increasingly toxic for my body and also that there was really no evidence at this point as to whether the chemo was keeping me stable vs. the tumors just being stable on their own. He also told us about some upcoming trials that I might want to look into for immunotherapy, but those are likely still quite a while before the trials get started.
The appointment with Dr. Gimenez of the interventional radiology department also went fine. He ended up not being able to actually make the appointment, but we met with his nurse practitioner and also conferenced him in on the phone. The process they are recommending is called Trans Arterial Chemo Embolization, or TACE. They explained the procedure to us, which would involve me having to come back down to NOLA and stay for a few days to a week.
For the procedure, they go in through the femeral artery and follow that up to the arteries that supply blood to the tumors. They then shoot some beads that are soaked in a special chemo blend right into the tumors and then finally, cut off the blood supply to those arteries. The analogy I came up with is that this is like walking right up to the bad guy (Tumor) and shooting him in the face, rather than bombing his whole village (my body). One of the potential side effects though, is that you could set his house (my liver) on fire. That is, it has the potential to do a lot of damage to the liver, including liver failure and/or damage to the point that I would be precluded from receiving other treatments in the future that require a nice, healthy liver.
So, I have a lot of thinking to do now as to whether I want to do this procedure or not. Currently the tumors on my liver are quite small and they would want me to come back ASAP to get the treatment, as being off chemo leaves me with the risk of them growing and then no longer being a candidate. However, if I go ahead with this procedure they would then want me to wait 2 months for a scan, and my next scan currently is scheduled in only 1 month. I take issue with this for a few reasons.
One being that if these things are growing, I don't want to wait an extra month to find out. Second being that if I get the treatment now, after I've already been off chemo for 6-8 weeks, then wait 2 months for a scan, there is really no way to know what the true results are. If it is stable, were they just stable on their own and the procedure failed? Did they grow a ton before the procedure and then it was a success? We would never know. I would prefer to have the procedure immeidately following a scan.
So my plan is to contact my local oncologist at Karmanos and see what they think about all of this.
Overall New Orleans was a good time. It is a great city, especially if you like live music or sea food (bonus for Alan, who loves both). I highly recommend it if you are looking to go on a fun vacation. We were able to hit some of our favorite spots, like Acme Oyster House and Pascale Manale. I did get sick (sinus infection) part way through the trip, probably due to weather changes, so that sucked but didn't have too much of an impact. We were able to see the Dashboard Concert while we were there, which Chris' team was so gracious to give us a pair of VIP tickets. The House of Blues was a very small and intimate venue, and as always the band put on a spectacular show.
That's really all for now. New scans coming in about a month (assuming I don't get the TACE procedure before that) and also spaghetti dinner coming up on the 16th.
View the Facebook Event here: https://tinyurl.com/FB-MegCarterDinner
Sign up and reserve your spot here: https://tinyurl.com/SignUp-MegCarterDinner
Coincidentally enough, Dashboard was playing their NOLA stop of the tour on February 13 at the House of Blues. So guess where we spent that Monday evening??
The appointment with Dr. Ramirez went fine. He agreed with me that it was a risk to be off of chemo, but also agreed with Dr. Philip that it was becoming increasingly toxic for my body and also that there was really no evidence at this point as to whether the chemo was keeping me stable vs. the tumors just being stable on their own. He also told us about some upcoming trials that I might want to look into for immunotherapy, but those are likely still quite a while before the trials get started.
The appointment with Dr. Gimenez of the interventional radiology department also went fine. He ended up not being able to actually make the appointment, but we met with his nurse practitioner and also conferenced him in on the phone. The process they are recommending is called Trans Arterial Chemo Embolization, or TACE. They explained the procedure to us, which would involve me having to come back down to NOLA and stay for a few days to a week.
For the procedure, they go in through the femeral artery and follow that up to the arteries that supply blood to the tumors. They then shoot some beads that are soaked in a special chemo blend right into the tumors and then finally, cut off the blood supply to those arteries. The analogy I came up with is that this is like walking right up to the bad guy (Tumor) and shooting him in the face, rather than bombing his whole village (my body). One of the potential side effects though, is that you could set his house (my liver) on fire. That is, it has the potential to do a lot of damage to the liver, including liver failure and/or damage to the point that I would be precluded from receiving other treatments in the future that require a nice, healthy liver.
So, I have a lot of thinking to do now as to whether I want to do this procedure or not. Currently the tumors on my liver are quite small and they would want me to come back ASAP to get the treatment, as being off chemo leaves me with the risk of them growing and then no longer being a candidate. However, if I go ahead with this procedure they would then want me to wait 2 months for a scan, and my next scan currently is scheduled in only 1 month. I take issue with this for a few reasons.
One being that if these things are growing, I don't want to wait an extra month to find out. Second being that if I get the treatment now, after I've already been off chemo for 6-8 weeks, then wait 2 months for a scan, there is really no way to know what the true results are. If it is stable, were they just stable on their own and the procedure failed? Did they grow a ton before the procedure and then it was a success? We would never know. I would prefer to have the procedure immeidately following a scan.
So my plan is to contact my local oncologist at Karmanos and see what they think about all of this.
Overall New Orleans was a good time. It is a great city, especially if you like live music or sea food (bonus for Alan, who loves both). I highly recommend it if you are looking to go on a fun vacation. We were able to hit some of our favorite spots, like Acme Oyster House and Pascale Manale. I did get sick (sinus infection) part way through the trip, probably due to weather changes, so that sucked but didn't have too much of an impact. We were able to see the Dashboard Concert while we were there, which Chris' team was so gracious to give us a pair of VIP tickets. The House of Blues was a very small and intimate venue, and as always the band put on a spectacular show.
That's really all for now. New scans coming in about a month (assuming I don't get the TACE procedure before that) and also spaghetti dinner coming up on the 16th.
View the Facebook Event here: https://tinyurl.com/FB-MegCarterDinner
Sign up and reserve your spot here: https://tinyurl.com/SignUp-MegCarterDinner
Tuesday, January 31, 2017
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
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
Thursday, January 5, 2017
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.
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
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