Tumor Recurrence Nov 2023

Even though they said the probably of recurrence is 100% I thought maybe I’d be lucky since it’s been so long. It’s pretty crazy that all of this started 10+ years ago! Here is a summarized time line. All of the procedures and appointments are in Boston, MA at Dana Farber/Brigham & Women's (“B&W”) Hospital. I am lucky to be able to work with the same team:

• Neuro-oncologist, Dr. Eudocia Q. Lee, MD, MPH https://www.dana-farber.org/find-a-doctor/eudocia-q-lee
• Neuro-surgeon, Dr. Alexandra Golby

Both are highly rated and respected. I put links above for their bio and info. I know Anthony (being that this is his first time) said he was very comfortable with them and felt they were both very specialized, knowledgeable and made us feel better moving along.

07/13/13 —> Surgery at Dana Farber with Dr. Golby

04/05/14 —> Last chemo treatment

09/02/14 —> Moved to Brooklyn

All of my follow-ups for MRI’s and other testing are with my doctor at NYOH in Albany, Dr. Susan Weaver. She is the best!

11/18/23 - 11/19/2023 —> Seizures at home, ER, scans, tumor is back 😣

11/21/2023 —> Felt like I had a pretty bad head cold, headaches, also it’s my bad sinus/allergy time

In the following 11/27/23 appointments, we did review the following images which shows a left frontal focus of enhancement as well as dense non-enhancing disease in the left frontal lobe causing mass effect and frontal horn collapse. FYI, the scans are backwards like you’re reading them from the bottom of my feet look up. Left is right and right is left. 

11/27/23 —> Televisit with Dr. Lee to discuss history of patient & illness, findings, assessment of recent imaging and potential treatment options/plan. This includes the following and of course, there are different risks that come with each choice. At the end of the day, I plan to have the discussions again to ultimately decide what they think is best. "If it was your child..." 

• Chemotherapy > 1 - option to repeat temozolomide  (same drug I took the first time around) or 2 - new drug called Lomustine
• Radiation may be an option but she worries about the neurocognitive toxicity given tumor location. Most likely skipping this time around. 
• Clinical trials that they have at the hospital:
• DFCI protocol 22-532 (IDH inhibitor Vorasidenib + immunotherapy Pembrolizumab): allows grade 3 but not grade 4, requires surgery on study, randomization to drugs before surgery or no drugs for a month before surgery but everyone gets both drugs after surgery.
• DFCI protocol 22-447 (Parp inhibitor AZD9574 + Temozolomide): allows any IDH mutant glioma, grade 3 or 4, could be considered an option if she decides to pursue surgery first, subject to slot availability, phase 1 study
• DFCI protocol 23-225 (IDH inhibitor safusidenib erbumine): because prior data suggests that IDH inhibitors alone may not be as beneficial in higher grade tumors, I am less in favor of this option. 

11/27/23 —> Appointment with Dr. Golby and her fellow to discuss history of patient & illness, findings, assessment of recent imaging and potential treatment options/plan. This includes booking my surgery as soon as they can. 

11/27/23 —> Blood/lab work (no findings)

12/04/23 —> Several, back at B&W: 

• Pre-op cognitive testing with Neuropsychology Dept. and my first time doing it. It was a very interesting experience. Essentially was to get my baseline in case I have cognitive issues post surgery. It felt like an IQ test and took 3 hours. Completing sequences of pictures. He read me short stories and then I had to repeat it as best as I could using the same words. Then like an hour later he asked if I remembered the stories and to do it again. He read a list of random words and then asked me to repeat as many as I could. That was multiple times and also randomly throughout. Then they asked some geography, history and science type questions (capital of Italy, who is Ghandi, what are 3 ventricles in the human body) and I’m like guy, I’m an accountant lol. I had to use blocks to re-create pictures on the paper. Copy a drawing then redo that throughout the time. He noticed I kept getting side tracked looking out the window and I told him he was right but it was difficult because this guy keeps coming outside, feeding birds, leaving and coming back, repeat… 
• 2 brain MRI's (1-functional and 1-standard) - my first functional MRI but the idea is to see how your brain reacts while you're doing tasks like making and releasing a fist, tapping your finger tips with your thumb repeatedly. I had to redo the finger tapping one because i kept falling asleep. There was no sound for Go, Stop so you just needed to keep your eyes open and watch the screen that changed from a red stop sign to a green one.
• IV issues, per usual. the MRI tech who does them all day long tried both sides snd no luck so then he got a nurse who is known for being the best. One and done ☺️

12/05/23 -12/07/23 —> Virtual preop/assessment calls,  PPE (Preoperative Evaluation), anesthesiologist call

12/07/23 - 12/10/23 —> itchy red rash on both cheeks; all on right side > swollen lymph node, minor earache, slight throat discomfort; Urgent care on 12/9 which basically led to a cortisone cream and recommended ultra sound of neck; 12/10 at 3:20 pm PCP appointment as recommended by my my surgeon’s NP and will have updates later on this

12/12/23 - 12/13/23 —> drive to Boston for dinner with so many of my loved ones and then Wednesday 7:30 am arrival for image-guided frontal craniotomy for tumor resection with intraoperative MRI and ultrasound with Alexandra J Golby, MD

SURGERY WAS SUCCESSFUL! Next steps to have my sutures removed and plan for my next treatment steps. So far we know the tumor is at LEAST the same Grade 3 as last time but could be more aggressive and now Grade 4. We should know by the first week in January. Once we have this info, then we make the plan.

12/28/23 —> POSTOP VISIT with Mary Beth Anketell, NP (suture removal, symptoms, other follow up, etc.)

Nothing like waiting 21 months...

To my dearest blog readers,

I can't believe that I haven't posted in almost 2 years. Although I'm sure most of you already know that in Sept 2014, I moved to Brooklyn and started a new job (same super exciting public accounting gig) in Manhattan. I had the luxury of living on my current roomies couch for a month before we found our own spot in Park Slope. 

Also, I never thought I would say this but over the past 21 months, I have become a loyal and true Belieber. 

Now onto my positive AF (a lot of adults probably won't get that acronym) medical update. So basically, I was having monthly follow-ups (MRI's and bloodwork) Mar-May 2014 and my fave lady, Dr. Weaver started spreading them further apart. But throw back to Dec 2014, a new 'area' appeared on this little intelligent brain of mine and unfortunately it was over the midline which is not a great spot. She said it could be delayed scar tissue or new tumor so we moved back to monthly follow-ups. She had me do my next MRI with a special type of infusion, I honestly can't even remember what it was called but it was supposed to show more depth and see if there was any blood flow to the area (indicating active tumor). Results: no blood flow which was super positive! So we started spreading them apart again. 

Throughout this time I have had some pretty horrendous MRI experiences, including one from today. I am not claustrophobic or afraid of needles but apparently, my veins aren't exactly cut out for these larger needles/tubes. I have to say my worst ever experience was back in Oct 2014. I had multiple needle sticks in various spots on my arm, one in my hand and one tube of contrast infiltrated which is pretty painful/burning and created a massive lump in my arm. I didn't show many people this picture because it looks like I was abused and I'm fairly confident on this day, the hospital was holding a convention for elementary school aged aspiring technicians and nurses to insert IV's and perform MRI's...

Anyways, those went away after a few weeks and I think they went back to hiring legitimate technicians and nurses. Until today... another horrendous experience, this time in an outdoor MRI unit which is basically a really cold trailer. The technician was extremely nice but let's just say, his needle sticking skills were a bit too close to amateur and required a couple nurses, including a pediatric nurse, for a total of 5+ sticks in both arms, causing some fairly attractive bruising. Nothing like last time so I'm not complaining because after today's MRI results, the follow ups are moved to SIX MONTHS!! It's a little miracle! There is my awesome news! 

Throughout all of this, an amazing, beautiful, hysterical, outgoing friend of mine, Jackie Abatecola (soon to be Ziegler) got some not so ideal news but is handling it like a MOFO champ!!! She is legit the strongest most beautiful lady I know.. Follow her story here!! https://www.facebook.com/fightforjackie/

In 30-40 years, her and I are going to be looking back like, we went through some shit but we came out tougher, stronger 💪🏼, happier 😄 and funnier 😂 (if possible)... Love you girl! 

Everyone just remember this...

At last, treatments have reached the end!

I cannot believe that it has been almost 4 months since I wrote my last post about Cycle 3 of treatment and now it is finally over (along with busy season which I am potentially even more excited about)! 

April 5, 2014: last Temodar pill was taken

April 11-19, 2014: went to Italy and had an amazing time

April 24, 2014: had my first, post treatment MRI and it was clear!

The cavity that remains in my brain, open, where the tumor cells were removed, will have to be watched very closely over the next year, MRI's every 3 months. A year from now, we will say that I am in remission. Dr. Weaver said that after that, they can spread out further and that hopefully it will be a decade or more before we notice changes in the cell behavior and at that point, will determine the next steps. My hope is that we put this thing to sleep for 70 years, then I'll be 94 when it comes back and at that point, SEE YA!! Those of you who do, please continue to pray for me. 

Want a little more positive news? My hair has started to fully grow back! Remember those pictures where I got a little too brave and showed the world my missing hair. Well world, it is coming back!! Slowly, but surely. For now, the bangs and headbands will continue to be my best friend. 

If anyone is interested in my trip to Italy, I put up a couple hundred pictures on facebook and so did everyone else on the trip! I'm also going to summarize the trip on here and tell everyone what we ate each day because it was quite amazing. 

We left Hudson at 1pm on 4/11 on a bus to Boston Logan, where we flew directly to Rome at 10:40pm (Eastern time) for arrival in Rome at 12:40pm (Italy time, would be 6:40am here) on 4/12. While in Boston, we had a lot of extra time to spare so we found a restaurant, had dinner and some vino, then after dinner, had a little more at the wine bar. We just wanted to relax you know before the 7 hour flight! Well, it worked, I slept 90% of the flight! 

Once we arrived in Rome (Day 1), we visited the Trevi Fountain and the Pantheon. Most of us threw coins into the fountain and made a wish. It was pretty insane seeing all the tourists! I felt like I was in NYC while in Rome, only difference, NYC doesn't have Gelato. And yes, on day 1, we all got some Gelato and it was worth it. Now I know why everyone told me ahead of time that I will love it. After this 1/2 day, we went back to our hotel. I was lucky to bunk with one of my best friends (and now actual "buddies") Jess Shader. Our room was pretty sweet. We had a nice balcony which was the best part! The shower was a bit small, but come to find out, that is standard for Italy. Small showers, toilets with no seats and the famous, Bidets. I regret to inform everyone that I did not try out the Bidet. 

Anyways, that night for dinner we had Margherita Pizza, salad and an icy lemon type dessert drink. Can I just say, after not having cheese for the past few months with very rare cheats, this pizza was AMAZING.

I'll try to make the rest short and if anyone is interested in what we did or saw, they can look it up! :-)

Next day (Day 2), we went to the Catacombs (15 miles of underground burial grounds), the "Wedding Cake", Piazza Venezia, walked around a lot and noticed a lot of beggars, people doing weird yet cool stuff for money, break dancers, etc. For lunch I split pizzas with my cousin, Lexi, it was delish. Dinner that night was spaghetti with bacon/ham - it was okay. The Rome food was very salty!

Day 3 was our busiest Rome day. We saw the Vatican, the Basilica, the Roman Forum, the Colosseum. Lots of touring, lots of learning. That day for lunch was pretty awesome. We found this cute little street, we had guys playing an accordion for us, singing, a little dancing, we saw a woman have her purse stolen right off of her chair while sitting down and eating lunch. Luckily, the woman's kids jumped up and caught the little thief! My lunch was some delicious spinach ravioli and we all split some antipasto salad for an app. Prior to meeting back with our group, a few of us (shout out to Gram) decided to have a few cocktails, margaritas for Jess and I. Dinner this night was this amazing lasagna. Jess and I were left in the dust by the adults and ended up sitting with the high school boys. Turned out to be fun! This was 1 of 2 of our not so sober evenings in Italy. We skipped the night tour and went to another bar. Thanks to Laurie Wordon for taking care of us! 

Day 4 woke up fully clothed, greattttt. Had a bus ride to Assisi which was my favorite of all places. We stopped for wine, crackers and samples on the way to give the bus driver a break (Paulo). I can't believe I have yet to mention our, very attractive tour guide, Stefano! Anyways, Assisi was beautiful. Even the St. Francis of Assisi church was amazing. During our short stay in Assisi, I managed to purchase leather  boots and flats. Oops. I split some focaccia bread with zucchini and cheese on it with Jess. After this, a 3 hour bus ride to Florence, where we got to the hotel and ate dinner, pasta, salad and pork. This hotel was NOT our favorite. But as Jess said, we can't always have the best room. I mean, I guess things could be worse than cardboard blankets and sandpaper towels. Or maybe not. 

Day 5 we find out the shower is broken as well, just lovely. Saw a gothic cathedral in Florence, shopped a lot, bought a few two three things at Zara, had the BEST lunch of the trip, this seafood pasta with mussels, shrimp, squid, clams and a bloody mary. Also had an amazing dinner this night (thanks to Mrs. Barletta). It was this vegetable stew/soup, pasta, pork, roasted potatoes. 

Day 6 Free day in Florence - did a lot of walking, picture taking, enjoying ourselves, shopping, etc... Had spinach ravioli for lunch, so good. Then a 4 hour bus ride to Venice. This hotel was our favorite! Had a great dinner and hung out with the waiters until way too late. Got to facetime with my love, +John Bunnell that was fun :-) I know they enjoyed the Jess and Erica show. 

Day 7 Bus ride to Venice, water taxi in, went on a walking tour of Venice. Took a Gondola ride which was amazing. This is a place I would LOVE to visit again. The streets are all very tiny and it is very easy to get lost. We had an amazing lunch right on the water. Split some Caprese with Jess and had green ravioli with bolognese. Mmm! Dinner was pasta, beef/steak and potatoes.

Day 8 The journey home :-(

If anyone has a chance to go to Italy, do not pass it up!!! Great trip!

So Happy about my clear MRI!

Stay positive everyone!!

Side Note: Can't wait until +Laura Konderwich comes back to the US. I'm really starting to miss this biotch.

<3 Erica Nicole

The Dawn of Cycle 3 of Chemo treatments, Busy Season, AND Creepy Selfie Pictures!

I have had some recent requests lately to update my blog. I can't believe it has been over a month since my last post! I guess I have been busier than I thought because this past month, all holidays included, flew by! I can't believe it is already January! January means a start to longer days at work and Saturdays in the office. I have been back to work just as usual!

Here is my medical situation/update: 
(1) every two weeks, blood work
(2) every four weeks, appointment with doctor to get next cycle's meds
(3) first MRI since starting the chemo will be at the end of January 

Two weeks into Cycle 1 (250 mg of Temodar), my white, "fighter" blood cells were very low so they recommend lots of hand washing, staying away from people etc. Four weeks in, they went up but not enough so for Cycle 2, Dr. Weaver reduced my dosage down to 220mg, this remained the same for Cycle 3 which I started Monday, Jan 6. Apparently the dosage may change throughout, depending on my blood work. Its Thursday, and 4 days in, I still feel pretty good. 

I actually went to Brown's tonight with some friends to wish my bestie +Eileen McElduff off to her new career and location! Although she will be missed in Albany, this gives more reasons for group trips :-) LOVE YOU SO MUCH GIRL! GOOD LUCK!!!! 

OH YEAH, getting these pills has been a TRAIN WRECK each month. They have to be home delivered from a specialty pharmacy. Somewhere along the process, something gets screwed up, every time. Also, once a month (and yes, it still gets screwed up), I have to have a 15 minute phone call with the specialty pharmacy to tell them my name, DOB, address, insurance company, dosage, if I have any extra on-hand, if I have any questions, if it needs to be signed for, social security number. Okay, the last one is a stretch but it is just very annoying. AND they don't call you to tell you if it didn't go through, instead, you have to call them and find out that the insurance company didn't approve it and it will cost a low $6,000+ a month, then you call insurance, it's a pain! I have to say, this past cycle (maybe third time is a charm?) went much smoother. 

I started slowly reducing the steroid I have been on since my surgery but then I started getting those weird, hard to explain, headaches, feeling of tightness/pressure, unable to focus, etc. SO, the Dr. says it is probably from that, so I upped the dose again and I have been feeling better. One major negative side effect = sleeplessness. 

So, I think I wrote in my last blog about how my left eyebrow started to thin and "no one noticed" and then every couple days, it would get worse and worse. After crying about it, more than I wanted to, I decided to do something about it. I watched some how to pencil/fill in your eye brow videos on youtube, bought the best products available (Anastasia Beverly Hills), and soon enough, became a pro at making eyebrows. I'll admit, for those weeks where it was completely bare, even the most talented make-up artist couldn't make them look real but I did my best and I had my bangs to help hide them. In addition, I lost a lot more hair than I was hoping. The top and left side was really bad. The clip-in bangs have been really a life saver. I am so used to putting them in and shadowing in my brows, it has become part of my daily routine (maybe have to get up 10-15 min earlier but whatever).

At first, I would say the worst part of all of this was at night and weekends. I still have to take my make-up off and take my clip-in bangs off and then it's just like, oh wow, this still sucks but I'm so used to that now. I can't just wake up on Saturday and Sunday like I used to and run errands without a little work but it really doesn't bother me. And now having people spend the night or me staying else where with groups of people is just kind of awkward. But I just can put on a headband to sleep and wash all the make-up around my brows off. It's worked out so far!

Anyways, Very few people had the "privilege" to see what this actually looked like throughout the process but now that it is finally growing back, I am willing to show the world. I guess I just want to show people again, that life really isn't that bad! 

Brows: Top Left (original), Moving Down (slowly thinning, getting worried), Top Right (non-existent - the WORST few weeks for me, this may have possibly been my most recent break down point), Moving Down (slowly growing back, happy as can be)

Self explanatory missing hair.

BUT, as stated above, I have managed to shadow in my brows, clip in my bangs and get ready for the day! I even look like I did when I was a youngster :-)

Same hair style 20+ years later. Love it!

Or on most weekends and lazy nights, I have been wearing these...

Picture was post eyebrow fiasco.

And I really don't want to gross anyone out so if you hate scars, staples, etc. I would advise you not to look much further (even though you can probably see it already..lol. I'm sorry) but I wanted to show everyone how amazing the surgeon was with re-stitching me and how well it has healed since July.

Who would have thought? Just Amazing.

While I was going through this crazy picture blog moment, I came across this gem that never hit the social world. Me with one of my nurses in ICU after surgery.

I was most likely her favorite patient :-) JK

Alright well I am done with the pictures in this post, I promise!

If anyone is wondering, I had a FABULOUS holiday break. I spent so much time with my family. I got to see all of my friends who live near and far (special shout outs to the out of state and country people, +Ashley Gaylord (Chicago), Randi Williams (Tampa) and Mark Coleman (somewhere in Italy). This was all so special to me! Celebrating Randi's bachelorette was AMAZING! LOVED IT!!! Missed +Laura Konderwich but was able to video chat with her pretty recently :-) LOVE YOU ALL

I also started studying for the CPA exam again. Wish me luck!

Until next time...

<3 Erica Nicole

THANK YOU to everyone!

To everyone who has been a part of my life since day one and everyone else who I have met or has touched my life in other ways, along the way:

I truly can not express the tremendous amount of love and support that I felt last Friday night at the Cure for Erica event. I'm so lucky to have all of these people to support me and I can't even begin to explain the feeling. I got to see so many people that I haven't seen in years, some that I haven't even met before, coming to support me. It was just amazing. I am so blessed to have everyone that I have, in my life. 

Specifically, I would like to thank everyone who helped plan, set-up and run the event (You girls know who you are!) Look at what a beautiful job they did:

A special thank you to Jeff Weiss and Paula Pierro for donating the venue, food, alcohol, limo (which was awesome!), staff and more! We could not have done it without you. 
 
Thank you to EVERYONE who came, wanted to come and who sent donations/support in other ways. And Congrats to all who won something! 

Thank you to +Laura Konderwich for being there, virtually. That video was SO amazing and it really touched everyone! I was literally sobbing I think 3 seconds in! I miss you so much. Even more after seeing that :-) But hey, the spring will be here before you know it and you'll be the lucky girl who missed another dreadful winter.

Thank you to every person and company for donating the items and services to auction and to have at the event, which made the whole thing possible. I knew there were a lot of auction items but seeing it all was just insane.

I would have thanked everyone on the microphone but if you know me, I'm kind of shy in those situations and I really don't LOVE to be the center of attention.

Anyways, I had SUCH a great weekend overall :-)

In addition, it really is just incredible to see a small community like Hudson, NY & surrounding areas come together for my family and me. I can't even believe all of the fundraisers that were put together, on top of the Cure for Erica, just to help us out. To name a few, the HHS Girls Volleyball game, Hot Diggity's Pizza Sales (I think I had a "slice" or 3 of pizza on this day, including a Cannoli), Devil's Fury Motorcycle Ride & Lunch at Kozels, Melino's fundraiser, Zumbathon, HHS Powder Puff game, Lia Sofia/Thirty-One/Arbonne Sales, Greenport Firehouse Chicken Dinner Sales, and even more! I apologize if I missed any other specific ones but know that they were all equally appreciated!!

I wish I had the resources to thank everyone individually because everyone makes a difference. Everyone helps me get through every day and I wouldn't be able to get through this without you all!

THANK YOU ALL!!

Medical Update
I started my first cycle of just chemotherapy pills on the Monday after the event (November 11th). The dosage was double of what I was on during radiation. The first few days, I was ok, just really tired. I actually slept, not only through the whole night, but for 9-10+ hours, each night. I went home to Hudson Mon-Wed just to be safe. Mom's always know what to do in these types of situations (or at least they are good at faking it) and I wanted to be home JUST IN CASE. So, because I was feeling okay, I came back up to my apartment and just got even more tired each day, I think by Thursday I slept 12-13+ hours. If you know me at all, this is NOT like me, usually 6-7 hours works. 
 
Then the weekend came along, I took my last pill of the cycle on Friday, and that was when I started feeling pretty cruddy. I didn't actually throw up but my stomach was NOT okay and my whole body was just kind of sore and exhausted feeling. Eventually, by the following Wednesday, I went back to work. I was still tired but wasn't feeling sick anymore.

During my 23 days off from the chemo, I was able to go back to doing normal things!

As part of this whole new routine, I have to get blood work at least every 2 weeks and follow-up appointments every 4.

I had my first post-chemotherapy blood work on Thursday, November 21st and my white blood cell counts and neutrophils (in layman's terms -  the "fighter" white blood cells) were pretty low. The nurse who went over it with me said that it wasn't that bad and that I should be okay but she'll have the doctor call me if she wants me to come back.

Turns out, the nurse was wrong about what the threshold of critically low or should be okay is. I caught someone's cold within a couple days of this, as expected when these counts are low. Then on the following Monday, November 25th, I get a phone call that I need to come back in as soon as possible for more blood work to make sure my counts were improving or else we'd have to deal with that or possibly push treatments back. This was the week of Thanksgiving so of course, Wednesday was all booked and they were closed Thursday and Friday. AND I was in Newburgh, NY at an all day training for work on that Monday, that leaves Tuesday to go in.

So Tuesday, I go in, they are still low, but better. This nurse was a lot more thorough, she said that although the counts improved, they are still pretty low and that I should avoid being around crowds, be careful at buffet style Thanksgiving (ie. I should eat first), wash my hands as much as possible, etc. She said last weeks should have been considered critically low. I'm now thinking, jeez, if I have to do all these precautions now, what should I have done last week?

My next appointment for both blood work AND my appointment with the Doc is December 6th. Hopefully all of my counts will be in range again so I can start the pills again on the 9th.

Weird cosmetic mishap, my eyebrows are pretty much nonexistent. They started to thin out during radiation but are almost completely gone, somehow, more than 8 weeks later. I called and they said sometimes this happens and that the radiation was in my eyebrow area but they were not expecting them to actually fall out. They are all hopeful for regrowth. And SO AM I! I had to purchase some eyebrow kit from Sephora so I'm getting kind of good at that but let me tell you, it is a pain. I actually have to give myself at LEAST 15 minutes early to apply. It's alright though. It surprisingly stays on really well!

Not medically related, I have gotten about 5% of my Christmas shopping done. Not good!

I hope everyone had a great Thanksgiving :-)

<3 Erica


 

 

Positive News

It has been a while!

As most people know, I have been on a "break" since Tuesday, October 15th. This just means, no radiation or chemo. I had to continue taking some meds (anti-seizure & steroids) but I'm tapering off of those now, slowly.

During my break, I felt pretty darn well. Minus several (semi-short and out of nowhere) bouts of tiredness and fatigue, a few headaches and a couple of emotional break downs, I think it was a great (almost) 4 weeks. My hair did continue to fall out during the first week of my break, which I was told would happen and they said I would feel really tired for the first few weeks as well. Good news is, I got bangs which really cover up the hair loss. Thanks to Laurie Wordon for being a hair dresser. Something that I learned over the past few years, having a mother who can double as a hair dresser can really save you some big bucks! Who would have thought a real salon charges well over $100 to get your hair colored. WHAT THE HECK!

Anyways, I waited to post for long because of two reasons: (1) I had nothing really too interesting to say because I was back to work full time and back to normal and (2) no medical updates. I didn't even have to give blood for the entire 4 weeks!

But today... I had my first ever follow-up MRI post-radiation, an appointment with Dr. Weaver  (neuro-oncologist) and an appointment with Dr. Chandra (radiologist). The MRI was at 7:30am, Dr. Weaver at 11am and Dr. Chandra at 1:30pm. The MRI took longer than I remember, I think 45 minutes. Plus I had to have contrast so that's a needle in the right arm. Then before all Dr. Weaver appointments, I have to have blood drawn, needle in the left. AND I don't even want to talk about taking that extremely sticky tape off. OUCH! Dr. Chandra visits are usually short and sweet but today was not. We were finally done by around 2:30pm. Talk about a long day in the life of a patient. Not to mention the waiting period in between the MRI and the first discussion on it, 2 hours later. I didn't really tell anyone about it because it is just one of those things where keeping it private is best, until the good news is ready to be spread....

The images came back "beautiful" according to Dr. Weaver and "looked good" according to Dr. Chandra. They showed no enhancement, the empty cavity (the part of my brain that was removed during the surgery) is now filled with brain fluid (this is normal) and then the area around the cavity showed the standard post-radiation swelling type of thing. She referred to this as the new baseline where they will look for changes at each MRI (T2 Flair I think?). To say the least, we were all relieved. I finally was able to relax. The only semi-not positive thing was that my "fighter" white blood cells were down a little but that is also common during the break. The count will determine each time what the dose will be, if it changes, and if there will be a delay in the following cycle.

Below is a picture of my "celebration" cocktail with Mr. Matthew "Matty 1c3" Bonocore, Meg Kelly (always gets a full name shout out) & my girl, Alyssa. The ladies had wine, while Matt sipped on a little Jack on the rocks. Everyone was so excited for me and I loved it!

The girls also pretty much finished everything for the event tomorrow night. They have done SUCH an amazing job, since the initial idea, that it makes me want to cry. I don't think anyone realizes how much work was put in. It's crazy and GREATLY appreciated. I love you guys! You know who you are!!

Not to mention, today's results will now make this weekend that much sweeter.

The next step is to start my 5/23 day cycles of chemo. Back to the anti-nausea meds and Temodar. The dosage is almost double from what I was taking originally, when it was combined with the radiation. I hope to start on Monday, November 11th, as long as the mail order company can ship it in time! They have been pretty good so far. Based on the dosage being so high, the doctor recommended that I take some time off from work. They said that I may handle it perfectly with little to no side effects but on the flip side, the first cycle may be really harsh and make me sick and tired. Hoping for the former, obviously, but took the time off, just-in-case. Oddly enough, talking to other Temodar users, the fist 2-3 days of the 5 days of pills are usually easy but then days 4-5 and extended through 7-10 days, will be when I will feel the side effects. We'll see! Keep your fingers crossed for none though!

From here on out, I will have blood work done every 2 weeks, appointments with Dr. Weaver every 4 weeks, MRI's every 3 months and a follow-up appointment with Dr. Chandra in 6 months. Blood work and MRIs now come as naturally to me as brushing my teeth every day. Piece of cake.

I chose to start on November 11th because I (typical nerdy Erica) created a spreadsheet of every known holiday, planned event or trip, birthday, wedding etc. over the next year. If I waited until the following Monday, the chemo days would have a major impact on both Thanksgiving, Christmas and some other events so I asked to start a little early. They agreed!

Ok, that's my update!

I am SUPER excited to see all of my friends and family, including some that I haven't seen in years while others I was hanging out with tonight. I guess I will also be meeting new people. One person I am really going to miss is my love +Laura Konderwich but I know she is doing awesome in Thailand!!! Special thank you to her for doing SO much in her few weeks leading up to her departure. She is an amazing girl.

I wish I could individually thank every person who helped plan and organize the event, those who donated items and/or services to make the event possible and every single person that is going to attend. You are all amazing. Here is an overall THANK YOU. I cannot begin to explain how much I appreciate everything. It is truly amazing! And for those of you who are unable to attend, thank you for all of the cards, donations, gifts and other support over the past 3-4 months. Also thank you to everyone who held their own fundraisers, on my behalf. Thank you, thank you, thank you!! I wish I could express it even more.

Now I really am done!

Have a good night people!

<3 Erica Nicole

Radiation? Check!

Felt SO good to not have to go in for radiation on Tuesday. I mean, I'll miss the techs but I can always go visit them! I met some really nice people: the techs, nurses, admin staff, other patients, radiation doctor obviously etc. Some patients were more fun to talk to than others so I got some contact info!

On Monday, my exit interview (as I like to call it) was quick and went pretty well. The nurse told me the following tips and info:

1. Side effects will last another few weeks , including, but not limited to:

A. Definite extreme fatigue which I really notice around 1-3pm daily. They said I need to listen to my body and rest. It's hard when I'm at work to even request leaving to nap because I usually get a second wind around 4:30-5 but apparently it's not because I'm tired from lack of sleep, I actually, medically need more.

B. Potentially more hair loss in the same areas. I think it cover it up pretty damn good. I think people would be shocked if they saw how much was really bald. When I curl it (which I started doing) and pin it just the perfect way, I think it's pretty unnoticeable. The wind causes a big problem because it does need to stay perfectly in place but I'll just make sure to always carry a mirror with me to fix it once I'm inside! The other problem is that I won't be able to put my hair up ever without a headband or scarf but that's not a huge deal, I hate my hair up anyways, except for the sock bun which looks cute with a scarf. Anywho!

2. Continue to use gentle products on scalp and face and continue to use aquafor daily for at least another month then can switch to a lotion. She said the skin marks from the mask (which I creepily took, see below- I threw it out already) will eventually go away. 

3. No sun for a full year on my face or scalp. I guess I will be healthier in the long run!

4. Healthy diet. Okay, so I took this one really far. I am going to go Kris Carr (Google her) style, which includes no added sugar, no artificial sweeteners, no caffeine, no alcohol, no white stuff AND vegan. I was already doing most of these and I started vegan this weekend and it hasn't been bad. I actually made really good meals so far and have done my research on restaurants around the area! 

This is a spicy peanut sriracha sauce over pan fried tofu. It actually tasted AMAZING but I will say these recipes take a lot of preparation time. Now I know so I will have to plan accordingly. This same night, I bought John some steak tips to pour the sauce over and he made a wrap out of it! 

And John got me this amazing veggie slicer/pasta maker. I used it finally (3 months later) and literally was amazed at how it made this zucchini turn into fasta (fake pasta- get it?) so last night I made a similar peanut sauce over pasta. It was a cold dish which I love. He had real pasta I had zucchini! So good. Also got a good processor which I see in a lot of recipes.

Back on the "healthy diet" when I say "no" to all of those things, in my case, that doesn't mean ever. Let's be honest, I am going to enjoy myself a cocktail, piece of cake, etc at special occasions, birthdays, holidays, events.. But I'm really going to make those things treats or exceptions, not the norm. The meat I have no problem doing without, never been my thing. I'm not even sure if I eat turkey on thanksgiving. I'm more of a side junkie (started pinning a ton of ideas.) The eggs and cheese are a little tough but they have great substitutes. Alyssa actually made me these AMAZING vegan oatmeal cookies with unsweetened applesauce and bananas. (Thank you, love you!) I already drink almond milk so I'm all set there. Also, I'm not going to be mrs. Omg made in an animal/dairy facility, don't touch it! More or less just not the obvious stuff, ie. I won't eat a bacon egg and cheese on a white hard roll with a glass of milk. (Although that sounds good lol) 

And alcohol, not having it for 3 months has really been crazy, especially with my group of friends, especially with people who grew up in Hudson where it was, sadly, all we did. And I'm 24, it is all that a majority of my friends do. I mean, everyone was willing to not drink and go out hard core because I have the most amazing friends and family but the usual weekends consisted of where to pre-game, how to get around and coming home at 3-4am. This was then followed by a very hung over, unproductive next day including really unhealthy foods (if the drive thru wasn't hit up the night before or both) and laziness. So I'm thinking, make those weekends special, not the norm. I will enjoy my occasional drink, maybe even at dinner tonight (new world bistro- so good) but that doesn't mean I need to drink a "personal" bottle of anything (college people will know what this means lol). Everyone is different but I think I will be happy not living the way I did before all this. Remember my whole weekend? Have no stupid fights with anyone? Don't embarrass myself? Don't mind if I do! Plus seeing other people act the way I used to was a real eye opener. It really is funny. And hey, now maybe people will just have to use me as a personal chauffeur. Tips accepted. 

Anyways, back on food, There really are just so many options! Just need to do a little research and preparation! Ok, in my case, a lot of research and a lot of preparation. Wish me luck!!

5. Stay on all meds except for anti-nausea and chemo pill. Will taper as directed by my oncologist. 

6. "Congratulations!"

Then the doctor came in, said my scarf looked good and that he'd see me in a few weeks. Awkward but funny and "cute" according to some.

On top of the delicious cookies and sweet card from Alyssa. I also got beautiful flowers from my mom, a really cute gift from Lizzie and a super sweet card from John. Love you guys!! Thanks!

I have an appointment this Friday with Dr. Weaver, my oncologist for my usual, 2 week follow up, blood work, etc. So far, so good. And she's really just so sweet and easy to talk to! May have said this in my last blog but if not, we discussed and I'm planning on starting my 5/23 Temodar cycles on the week of Nobember 11th. I plan on updating this as it gets closer and I have more info! 

What else? The weekend of October 26th, I plan on being in Hudson for a few events that some great people set up, including the Melino's event. I'm hoping to see a lot of my friends who I haven't had the chance to in a while! It should be a fun night. I mean, is any night at Melinos not worth it? I was also thinking of maybe doing the headless horseman on that Friday or maybe Sunday (Cody and Nicole, I know you aren't Internet savvy but I didn't forget about you guys asking) Anyone else interested?? I might get tickets this week for it so let me know!

SO SAD, don't even want to say it but my bestie, Laura is also leaving America that weekend to grace Thailand with her presence! Laura the Explorer!!! Love that girl and can't wait to figure out the best time to video chat with her!! 

As always, thanks for keeping up with me! Hope I didn't forget anything!

<3 Erica