December 7, 2016 - Another round of good news

Last week (December 2) I had a CT to check my progress and today I received the results. I was really nervous about the scans because I had been having more stomach aches since around Thanksgiving. Luckily we met with the doctor and received very good news - no new growth, no tumors increased in size, and one tumor that shrunk by 2mm.

I still struggle a little bit internally with the fact that this is considered good news. I have always been an overachiever, so as I said before going from that first set of scans that showed a 75% reduction to these scans that show such small progress is tough to wrap my head around. But I need to be grateful for every single day that is progression free. Every day that I continue to tolerate this treatment and still keep my disease at bay is a blessing. The longer this one works, the longer we can wait until we are forced to try something new, and the longer I stay alive.

So, the plan is for 3 more rounds of the same treatment: Carboplatin and Etoposide reduced to 75% of their original level. As always I started the first round (round 9 over all) after my doctor's appointment today. I will have a 4 week recovery this time, and go back again January 4. Lucky me, I get to spend my 33rd birthday getting chemo.

This week is my 4th week back at work. It is also my 2nd time getting chemo since I've been back. Needless to say, it has been a pretty rough transition for me in multiple aspects. One hard part is adjusting to being on a schedule again after so many months of not having to be anywhere or do anything (other than appointments) at a specific time. Even though I usually got up when Alan went to work anyway, there is a big difference between hearing that alarm and switching from lying on your bed to your couch and knowing you have to go use your brain and accomplish something.

I also suffer from something people refer to as "chemo brain", which is common to happen when you are undergoing chemo and can even take a year or more to fully wear off in situations where people have no evidence of disease and are able to be off treatment. This makes me a little slower in thinking than I normally am. Sometimes I can't think of common terms for things.

One of the biggest things I am struggling with at work is being part time. I am used to working to get the job done, no matter what. Now I am on medical restriction for my hours, and it is important for me not to go over that amount. Luckily my managers and my team have all been incredibly awesome and supportive, and push me to pass my work off when it is outside of my hours and I am still working.

November 24, 2016 - Giving Thanks

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

November 4, 2016 - Thinking about reality

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.

          

Thanks for reading. Sorry this one was pretty depressing.

#meghanismyzebra

#letstalkaboutnets

October 20, 2016 - LOTS of updates including new scans

I haven't updated in far too long. I always think I don't have enough to write about to do more frequent updates, but then I end up with like 10 pages worth of updates and I appreciate your patience if you are actually reading the whole thing. I will break this into sections and try to do a "too long; didn't read" short summary at the very bottom for those of you who freely admit that they were never elected to read.

Worldwide NET Cancer Awareness Day / Fundraiser

As I have mentioned before, Neuroendocrine Cancer is a rare disease, and my particular disease is an even more rare subset referred to as High Grade Neuroendocrine Carcinoma (HG NEC) which is more aggressive and almost always progressed to stage 4 by the time it is discovered, reducing patient outcomes. Much of this late diagnosis is due to continued mis-diagnosis as other chronic issues, as doctors are taught to "think of horses if you hear hoofbeats" or in other words if it looks and sounds like a common illness it probably is.

I say all of this to ask that friends and family join me in helping to raise awareness for this disease and help patients get diagnosed sooner and more accurately by sharing some of my posts in the coming weeks.

I am also considering having awareness/support Tshirts and/or bracelets printed with zebras on them and something about Neuroendocrine Cancer. My sister Kathryn would make the design and I promise it will be awesome, because she is awesome. The Tshirts would be $20 each and bracelets $5. If you are interested and would DEFINITELY buy a shirt and/or bracelet please let me know as I would need to have minimum quantities guaranteed before I commit to an order. All proceeds of these items will go towards my medical bills, which are currently in excess of $10,000 because my insurance plan year ended June 30, just after my first couple rounds of chemo, meaning I have had to meet my deductible twice in less than 6 months.

Carboplatin and side effects

As most who read my last blog know, I was switched to Carboplatin instead of cisplatin due to increasing side effects including some irreversible hearing loss. I tolerated the first round of this quite well, especially compared to round 5 of cisplatin. I still have ear ringing (and am getting hearing aids), fatigue (but not all day every day for 3 weeks), and increasing neuropathy. My new hair growth is starting to fall out the past couple days. The main side effect that got better is I didn't really lose my appetite this time. But maybe not so good, I gained back 6 lbs in 3 weeks after remaining fairly stable at every 3 week interval for nearly 6 months.

Fatigue continues to be my worst ailment, I would even say the fatigue is worse than permanently diminished hearing. I can get hearing aids. I can ask people to speak more loudly or spell words or write things down. I can cope with it, it is annoying but it isn't debilitating. Fatigue doesn't go away until it is ready, no matter what you do. It is unpredictable day to day and situation to situation. I could be feeling great all day and then suddenly, when I least expect or want it, it could hit me like a semi truck. I get winded walking into the next room, I can barely hold my eyes open. My brain doesn't seem to want to funtion properly. I lay on the couch, and all I can think of is how much I would like to eat a sandwich or a bowl of cereal, but I can't even imagine summoning the energy to walk to the kitchen, let alone standing long enough to prepare a meal.

 SCAN RESULTS - MRI / CT

As many of you know I had an new brain MRI and chest/abdominal CT done last week Thursday (10/14). Yesterday I had my appointment with my nurse practioner to go over the results and discuss next steps and the outcome was quite good, medically speaking.

The brain MRI continues to be clear, which is terrific news. The CT also showed that my lungs are also still clear and that there is no new growth anywhere else! As for the existing tumors, the primary tumor on the pancreas shrunk ever so slightly. Several of the liver tumors also came in a little smaller  as well, with any that didn't shrink at least remaining stable. No individual tumors were called out as having gotten any bigger compared to July.

Like I said, medically speaking this is very good. I know I should be happy about this, my medical team certainly is. I should be over the moon jumping for joy. Many of my new friends have not been so lucky in the recent past, and I feel awful and selfish about the fact that these good results have me in a state darkly contrast to that of my July results. Back then, 75% reduction in area. I cried thankful tears of joy. Today, when I heard the results I had to hold back my tears because they were of anger and disappointment.

I try to keep a positive attitude as much as possible, but I probably took it too far, got my hopes too high. I kept convincing myself that today they would say "there is nothing there, it's all gone" or "it was all an awful mistake, there was never anything there to begin with" The reality of my life, though, is that in my case even zero reduction is cause for celebration, so long as there hasn't been growth and I am able to tolerate side effects with a decent quality of life.

So the path continues onward. 3 more rounds of Carboplatin and etoposide, spaced 3-4 weeks apart. I started the first yesterday after receiving the news and will finish up right before the new year, and have another scan session mid-January.

TL;DR version:

1) NET Cancer day is November 10. Please share my posts on Facebook as it approaches to raise awareness. Also, let me know ASAP if you would definitely buy a tshirt for $20 or bracelet for $5 to help with medical bills so I can put thathe plan in action.

2) New drug carboplatin felt less harsh but I am still getting hearing aids and fatigue is the absolute worst and most depressing part of this treatment.

3) I got the first updated measurement scans since July last week and results yesterday. Results are good with several small shrinkage anden no new growth, but I was still sad about it because it isn't gone completely.

September 28, 2016 - Oh when the Saints, go marching in... Visit to Specialist and NET Conference in NOLA (and other updates)

As of my last update, I was scheduled to begin round 6 of chemo (Cisplatin/Etopside, final round before re-scanning) on September 13. However, due to my worsening side effects (hearing loss, ear ringing, neuropathy, bladder weakness) my doctor recommended an additional 2 weeks off of treatment. During that two weeks, they wanted me to see an audiologist to evaluate the extent of my hearing loss.

On Friday (9/16) I went to see the audiologist and they determined that I do have significantly deteriorated hearing for sounds greater than 2000 Hertz. This is mainly consonant sounds and the voices of women and children. The result is not so much that i can't HEAR, but that I can't decipher what people are saying. Especially if there is any type of background noise. I also have a lot of ringing in my ears, an almost constant low buzz with occasional loud, high pitched rings. To (hopefully) resolve all of this, I will be going back next Friday (10/7) for a hearing aid evaluation.

In addition to getting the hearing aids, I will also be switching one of my treatment drugs effective immediately. I am switching to something called Carboplatin instead of Cisplatin. These are both platinum based chemotherapy drugs, generally used to treat high grade cancers. Carboplatin is similar  to but slightly less harsh than the Cisplatin. Many people have reported lesser side effects after this change. In addition, this is less toxic to the kidneys so my first day of treatment isn't as long since I don't have to receive 3+ hours of hydration fluids. I started on this regiment today for Round 6.

Last week we flew down to New Orleans to meet a new specialist and attend a conference. We were lucky enough to get some travel grants to help subsidize the cost of this trip as well as 3 nights of no-cost lodging at the American Cancer Society Hope Lodge. While in New Orleans I received something called an Octreoscan as well as met with a specialist at the Oschner Medical Center. Oschner has a program called NOLA Nets that has a whole team of doctors, nurses, etc. that specialize in neuroendocrine research and treatment. The Octreoscan is different from a standard CT or MRI. I was injected with a small amount of something called Octreotide, which is attracted to certain receptors that could be present on my tumors. If those receptors exist then the Octreotide would cause those parts to "light up" on the resulting scan. If these receptors existed, that could potentially open up some new treatment options.

As of now, the results hadn't been read and provided by the radiologist, but when I met with the specialist he said that he did a quick review and didn't see anything that stood out, so it is likely that I do not have those receptors. Other than that, his recommendation for treatment was not much different that my current plan here at Karmanos. Going forward I will consult with both doctors and all my records from Karmanos will be sent down to NOLA as we go along. However, for the most part I will still receive what ever treatment is decided on between both medical teams locally here at Karmanos, and unless something drastically changed or I just wanted to meet in person, it will likely be unnecessary for me to travel frequently to NOLA for anything. The plan of action was that I would make the aforementioned switch to Carboplatin for Round 6, and get my previously planned post-round 6 scan about 2 weeks after (scheduled 10/13). Further plans will be made once the result of that is known. Essentially if the tumors are stable (same) or further reduced from July, I would continue with 3 more rounds of the Carbo/Etop combination and then scan again. If there is any growth (of the existing tumors or in new areas) then we would switch to a new drug for Round 7. The likely drug that I would get in this event is called Folfox.

The National NET Patient conference started on Thursday last week and ran through Saturday. The conference overall was a good time and we met some interesting people that we will stay in contact with and got a lot of information in general. The disappointing part was that the majority of the conference was geared towards the more common "Well Differentiated" or "Low Grade" type of NET, where as I have the "Poorly Differentiated" or "High Grade" version of NEC (Neuroendocine Carcinoma), which is more aggressive, more rare, and most often does not share treatment options. The speeches by doctors and other medical professionals were heavily prefaced with statements saying they were not applicable to High Grade tumors. Despite this we did get some good information, some cool zebra/NET swag, and a chance to do a little exploring in a city we had yet to travel to. Those of you that are our friends on facebook can see some of the things we were able to do, like live music on Bourbon Street, some cool local restaurants outside of the main downtown/French Quarter, lots of oysters for Alan, and of course, beignets at Cafe Du Monde.

It was nice to be home, but to be honest I was dreading going back to Karmanos today. For the past week or so I have been feeling so good. The chemo side effects had mostly subsided. Less neuropathy, no nausea, less fatigue (but I still sleep/nap more than a normal person should), and no stomach pains. I ate to my hearts content in NOLA and didn't experience any odd stomach issues. I had been terrified of the tumors growing a lot on my extra 2 weeks off. Although we can't confirm if there was any growth/reduction until the scans in a couple weeks, mentally I am telling myself that since my pre-diagnosis symptoms didn't return that it wasn't growing out of control just to keep my attitude positive. But after all of that, the last thing I wanted to do today was go back and get more poison pumped into my body that I am reasonably sure will have me feeling like crap within a couple of days.

Well, I think that is all for now. I probably won't write again until after I have my scan results in hand, which will be after my doctor's appointment on 10/19.

Thanks again to everyone for all of your comments, love, prayers, and just general support.

<3

September 13, 2016 - Four months and counting

Today marks 4 months since the day that changed everything. It also marks the beginning of Round 6 of Chemo. In honor of these milestones, today is also the day that I have decided to go "public" with my diagnosis. For 4 months, I have been keeping this blog but not sharing it with anyone. I've been avoiding posting anything about my endless doctors appointments or photos of me without my wig on facebook. So, I figured it was time to stop "hiding".

I also plan to share things about Neuroendocrine Cancer to raise awareness of NET. It is a rare form of cancer, and most people who I talk to and have told them that is what I have, will say they have never heard of it. NET awareness day is coming up on November 10!

On to the updates. Things have been pretty rough since my last post. I am not sure if it was because I was fighting an illness on top of it, or if things just get rougher as time goes on, but round 5 was ROUGH. The fatigue did not start to clear up until day 12, and even yesterday (technically day 22 since my doctor asked me not to come in until Tuesday) was full of naps.

I am anxious to go in for round 6 today for many reasons. First, I am nervous about the side effects and how long they will last. As I said, last round was rough and I feel like I just barely started to feel better, now I have to go back again. I am also anxious and impatient to get new scans. I wish there was an easy way to get real time updates on the status of my tumors and how they are reacting to the treatment, but unfortunately there isn't.

Thanks for reading!

August 22 , 2016 - The honeymoon is over

Round 4 was not the most fun. I was definitely experiencing more side effects than any of the previous 3 rounds. The ear ringing has become almost a constant low buzz, with occasional sharp rings. I was also had a lot more nausea and fatigue during this time. The fatigue lingered on throughout the entire time, including on the cruise, just not as severe as it is during the first week or so after treatments.

When I went for Round 4, they asked that I come in for a check up the day before we left on vacation. I went in and they drew some blood and found that my immunity was very low. Due to this they prescribed me some "preventative" antibiotics to start taking immediately before we left. They also had a laundry list of things that they would "prefer" me not to do on my vacation, such as go in the ocean, go in direct sunlight, eat from the buffet, etc. Needless to say, I did not follow directions very well.

I did manage to avoid the buffet for the majority of the cruise. We ate lunch in the buffet on the very first day, but after that I never went back. Instead, we went for breakfast in the main dining room every day, where you could get made to order omelets as well as a variety of other items served from the kitchen instead of the buffet. For lunches we would go to the specialty restaurants and dinner was always served in the main dining room. My least compliance was probably with the sunlight, although I did slather on the 100spf sun screen constantly.

My biggest mistake was the ocean. On Tuesday, about half way through the cruise, we were in St. Maarten and I went in the ocean at the beach. I got caught in a wave and a huge spray of ocean water shot up my nose and down my throat, which immediately started burning. The sore throat transitioned to a runny nose, which transitioned to a violent cough. Luckily it developed slowly (probably since I was still on antibiotics), and the cough didn't really start until Friday afternoon and we docked/flew home Saturday. Unfortunately, the cough, congestion, and runny nose are still pretty bad now.

Yesterday I started Round 5 of treatment and today I saw the Nurse practioner before my treatment. She prescribed me some stronger antibiotics to help get rid of what ever is causing my cough. Only about a month until I get new scans again and determine what next steps are.

July 27, 2016 - Good News!

Well, it has been just over a month since my last update. In case you were wondering, the wedding turned out perfect! The weather was beautiful, I felt the best I've felt all year, and it was just an over all extremely amazing day! Shout out to everyone who helped to make it possible and everyone who was there.

So, a few days after the wedding (July 5) I went back to receive my 3rd round of chemo. Overall it was a little worse than Round 2 but not totally awful. I've started having a little more ringing in my ears, which is a side effect of the cisplatin and is concerning since that drug can cause hearing loss. I have to monitor that. I was recovered well enough from side effects by Alan's birthday (July 19) that we were able to take a short, one-night trip to Niagara Falls to celebrate. We also considered it a bit of a mini-honey moon.

Last Friday (July 22) I went in to have a new brain MRI and full body CT done. Today I went in to see my doctor and discuss next steps. The brain MRI was still negative (no tumors) and the CT showed a significant reduction in the pancreas and liver tumors. For the tumors that the report specifically listed out, it was about a 75% reduction in area. Unfortunately, the radiologist did not list out the size of every single tumor, but my doctor did say that they were all similarly smaller. This is considered an extremely good response to the drugs that I've been on.

My doctor's plan of action from here is that I should do another 3 rounds of the same treatment, and I started the first one today. After these 3 rounds, we will do another scan and decide how to proceed from there. I was also able to get an appointment with another national specialist in New Orleans, who specifically specializes in High Grade cases. I will see him right around the time that I finish the 6th round of chemo, so I will compare his treatment plan to what my doctor says after my new scans and go from there.

We have our honeymoon coming up soon, a Caribbean cruise. I am excited and hope that I am fully recovered from any side effects I have from this week of treatment, and that I don't have any issues.

Until next time!

June 25, 2016 - I'm bald!

Well friends, I finally gave in. After my last post, my hair was falling out progressively more and more each day. It was causing a mess everywhere and making me very depressed. Every time I looked in the mirror I felt like I LOOKED sick, regardless of how I felt. It was kind of like a weird, sad, elderly circus clown. After much debating and a heart to heart with one of the other women that attends a monthly support group at Karmanos, I had Alan cut my hair and shave my head last night.

OH. MY. GOODNESS. If you have never had a shaved head before, I highly recommend it. The feeling of a cool breeze across your bald scalp is the best kept secret of hairless people everywhere. Although I had been on the fence about doing it, it was an instant mood lifter. A nicely shaved head looks 1,000,000 times better than the random bald patches did. The whole process did wonders for my mental and emotional health.

Now, to find some cool scarves and hats for scalp protection!

I also had round 2 of treatment this week. Today is day 13 and overall I felt better than last time. Hopefully the next treatment is just as smooth. Also, only one week until the wedding!

June 8, 2016 - Round 1 Update and Hair Loss

Well, last Tuesday (day 9 of the cycle) I woke up and felt almost completely normal! I also had a check-in with the nurse practitioner that day to report on my side effects so far. 

Since I was feeling better, I decided to go ahead with my plan to attend the Dashboard Confessional / Taking Back Sunday concert at Freedom Hill on Saturday, including my VIP meet and greet with Chris Carrabba. My tickets for the actual concert were General Admission Pit, and I was worried about having to stand all night, plus I had come out pretty beat up after the last TBS concert I had been to, so I called the venue and was able to be switched to an assigned seat while still keeping my VIP status. The concert was great and I quickly realized that there was no way I would have made it through the night without at seat, so I was very appreciative of that. 

The bad news is, when I woke up on Sunday (day 14 of the cycle) I noticed that way more than the normal amount of hair was coming out in my hairbrush when I was getting ready. Since then I have been afraid to wash it. More and more has been coming out every day when I brush it, and even if i just happen to touch my head or run my fingers through it. Today I finally washed it for the first time since Saturday, and SO MUCH hair came out in the shower. It really was devastating to see all that hair. There are definite spots on my scalp, especially around the center part, where you can see small bald spots. I am really worried with the wedding coming up. Alan's sister is going to take me wig shopping this weekend. 

Off to Round 2 next week. 

May 28, 2016 - Overview of treatment plan and Round 1 side effects

I had my first round of Chemo treatments this week. The drugs that I am receiving are called Cisplatin and Etoposide. The treatments are on a 21 day cycle. On the first day of each cycle I will get blood work drawn and meet with my doctor to discuss any questions I have and make sure I am healthy enough to receive the treatment that week. As long as everything checks out, I receive both drugs that day. Cisplatin is a platinum based drug and has a lot of adverse potential side effects such as dehydration, kidney damage, permanent hearing loss, etc. Because of this, I get a bag of hydration fluids both before and after that drug is administered. The Cisplatin runs for half an hour and the Etoposide for an hour. Between the labs, meeting with the doctor, hydration, and chemo drugs day 1 is about 8 hours at the doctors office. Day 2 and 3 are much shorter, I only have to be at the office for about 2 hours. I get very little fluids and only have to get 1 hour of the Etoposide. Days 4-21 are just recovering from the side effects and trying to live my life as much as possible. As of right now, I will do 3 of these 21-day cycles then I will have new scans done to see if and how well the treatment is working.

In general the treatments will all be given in an IV in the port in my chest. However, I think I had an allergic reaction to the surgical glue, and the area was very inflamed this week. They gave me antibiotics and had to put an IV in my arm instead. Luckily the nurses here were much more skilled at finding my tiny rolling veins than all the ones I dealt with at Beaumont. My arms and hands are still bruised from the past couple weeks of IVs and blood draws.

So far the worst of the side effects has been fatigue. I spend a lot of my time sleeping, mostly on the couch since it takes a lot of energy to climb the stairs. I have also been having a lot of nausea, especially first thing when I wake up. I keep crackers nearby and luckily haven't vomited yet. I decided to take a medical leave from work, at least until I fully understand how I will react to treatments. We also decided to continue on with our wedding on July 2nd as planned. The timing of my treatments are such that the wedding would fall on day 20 of a cycle, and the doctor said that I should be feeling pretty good by that point.

More updates to come!

May 21, 2016 - The road to diagnosis and choosing a treatment

It was no secret, for most of 2016 I was feeling like absolute crap. I had little to no energy and I was suffering from severe stomach pains daily. I had been to my doctor who suggested everything from IBS to food allergies as the cause.

Finally, around the middle of April, I couldn't take it any longer and I asked Alan to take me to the ER at Beaumont. I ended up staying in the hospital for 3 days, where their diagnosis was diverticulitis with a treatment of heavy antibiotics. They also noted that they had seen "some little spots" on my liver in the CT scan and said that it was probably nothing, but I might want to get an outpatiemt MRI to see it in more detail. 

Around 3 weeks later, after fighting with my insurance company for authorization, I was finally able to get the MRI. The results showed something small on my pancreas that hadn't shown up on the CT, and also showed that what ever was on my liver had gotten bigger. I was told to come back for a biopsy. 

The week of the biopsy was agonizing for me, and I worked from home that week while awaiting the results. When the doctor finally called Friday afternoon with the results, I was in shock. The doctor said he couldn't really give me much information since he was not an oncologist, but the few buzzwords he did say were probably trending on google over the next few hours as I googled them in different combinations. He confirmed my availability to come back to the hospital and meet with an oncologist Monday morning, and I was left alone with my thoughts until Alan got home from work. 

Over the weekend we broke the news to our parents and siblings and did as much online research as possible. Monday I went to my appointment accompanied by Alan and both of our parents. There, we were told that Neuroendocrine Cancer is extremely rare, only accounting for about 1% of all pancreas tumors. My case was even more rare since my tumor was classified as high grade, small cell, and poorly differentiated. Essentially this translated to aggressive, fast growing, and inoperable. My disease was also classified as stage IV as it had metastasized to the lymph nodes near my liver. Their recommendation was to start on chemotherapy as soon as possible. They set me up with a series of appointments for the rest of the week, and scheduled my first chemo appointment one week out. 

The next day (Tuesday) I underwent surgery to install a medical port in the left side of my chest. The purpose of the port is to make it easier to draw blood or run an IV rather than poking my arms 20 times. I was also went for a brain MRI Wednesday and a full body PET scan Friday to look for any additional growth. 

Throughout all of this we continued to do our own research and found that there was one doctor designated as a NET specialist in the entire state. Luckily, we were able to get an appointment with Dr. Philip Philp at Karmanos for Friday, May 20 for a second opinion before starting chemo at Beaumont. After reviewing all of my medical records sent over from Beaumont he told us that he agreed with the diagnosis, but disagreed with the treatment. He said that the specific chemotherapy drugs that I was scheduled to receive the next week were for standard Pancreatic Cancer, and that they were not effective for NETs. I then had to make the decision between continuing with the original treatment plan laid out for me, or switch my medical care over to this new doctor. Karmanos was able to squeeze me into the schedule for the following week so that there would be no delay in starting treatment, and I cancelled all remaining appointments at Beaumont. 

May 13, 2016 - the day that changed our lives forever

On Friday. May 13, 2016 I received the news that would change my life forever. I had a biopsy sample taken from my liver earlier in the week, and the results were back. The tissue was identified as a Neuroendocrine Tumor (commonly referred to as NET), and it was cancerous. The tumor had originated in my pancreas (PNET) and metastasized to my liver and lymphnodes.

I have decided to start this blog to document my journey and easily share updates with friends and family.