Thirsty Thursday

Today the Temodar class went well! It was with another woman (maybe in her 60s, fully shaved head, just had surgery, it was really sad for me to see her) and her daughter was with her and then me! I was expecting an actual "class" like 20 people learning but really it was just us because we're doing the same treatment plan. She seemed a little disgruntled/upset because she has been just waiting on when to start treatments (I guess that is standard) and I could tell she was just waiting around, made a comment like she didn't know who was going to call who next or what to do. So I tried to make her laugh a little and said, you can just be like me and call every day, literally, multiple times a day. We're the ones that have cancer, not them. And she smiled :-) Then the instructor said "Actually Erica, there is a nurse in the back that wants to see you after this. She said she wants to put a face to the phone calls. She said she feels like you're best friends," and the other patient said, I guess you're not kidding about calling every day. NO I'M NOT!! lol

Here is my light reading for the evening "Introduction to Chemotherapy" - I'll let everyone know when I'm finished so they can borrow it. First to ask, first to receive.

So, tomorrow at 2pm I have my dry-run and starting treatments on Tuesday, September 3rd. The time slot I got was 8am for now. I think that is a perfect time! Then Tuesday night I will start all the medications they gave me. Yippee.. let's cross our fingers for no side effects the WHOLE TIME!

LBDNL (Last But Definitely Not Least), THANK YOU SO MUCH TO EVERYONE FOR SHOWING ALL OF YOUR SUPPORT!!! I REALLY APPRECIATE IT SO MUCH AND LOVE EVERYONE (EVEN MORE THAN I ALREADY DID) SO MUCH!!!!

THANK YOU!!!

<3 Erica

Fundraiser/Life Update!

Good Evening Followers!

 

My gals have come through and set-up this amazing fundraiser at Glennpeter Jewelers on November 8th, 2013 from 5-9pm. See invitation flyer below (props to +Elizabeth Hunter )! Open to all but RSVP is required to Alyssa or Lizzie. Sounds like there will be food, drinks and lots of exciting auction items and other fun things to do. What I am most excited to do is dress up!! They have been working so hard and I REALLY appreciate it so much and love them with all of my heart! My family and I cannot express our thanks enough!! Love you girls and love all the supporters. It has been endless and just great.

+Alyssa Abitabile  set up www.facebook.com/cureforerica

+Laura Konderwich set up www.youcaring.com/ericawordon 

+Megan Kelly  also noted that T-Shirts are still on sale for anyone who is interested at www.booster.com/teamerica

 

I LOVE them!!

 

Ok, I'm done soliciting now! YIKES (I sound like I'm begging huh?- sorry people) I really do love you all. But medically, I have no important updates which is quite frustrating. 

 

I got a phone call on Monday night saying that my Temodar will be delivered by today (which it did) but I don't start it until treatments start and as you all know now, I still don't have a start date! So I guess I will stare at the prescription until then. Also got all my other prescriptions the other day. I think I need to purchase a medicine bag- do they make those?

 

I also got in touch with the office manager at Dr. Chandras who said that she would REALLY like to get me in for my "dry run" on Thursday after my Temodar teaching class (1pm on Thursday) so I don't have to make several trips and then hopefully I will start the actual radiation on Tuesday (closed on Labor day, obvi even doc and nurses have to celebrate working so hard, I guess). With that said, yesterday I was really excited... until today ended and I didn't end up getting that phone call or appointment for Thursday so I am back to where I was on Tuesday, waiting...

 

If anyone is wondering what a dry run is, I go in as if I am starting radiation, put on the radiation mask, do the whole process but without the actual rays (I don't know if that is even what you call them but it sounds right). Then the NEXT treatment is the actual treatement with these so-called rays.

 

So the nurse manager said that the only reason it takes so long is because they need to come up with a "master plan" and it is really important not to rush the plan. I am praying (fingers crossed) that tomorrow I finally find out that I can have my dry run on Friday and then start actual treatments on Tuesday. At the very least, I think I will start at some point next week.

 

Once the plan is set, I pick a time slot from 7:30am to 3pm (Mon - Fri). I called and tried to be a little sneaky to see what spots were potentially open because I would LOVE the 7:30- get it on and over with every day! BUT she said that spot is usually taken and people sign up for it during treatments and will get it the next time it opens. So I will have to start at whatever random (most likely inconvenient but let's face realty, I don't think cancer is meant to be convenient) time, and then I can sign up for a better time and wait until it opens!

 

I think that about sums up my week.

 

OOOHHH WAIT - for everyone asking me about work. I actually went back to work as a regular employee, full-time with the exception of my appointments for now and will be dependent on how I feel in the future (tired, sick, weak, etc.) Just maybe I will end up feeling fine and work harder than some of my co-workers? Just kidding to my co-workers who are reading this! But it has been going really well and it is so NICE to be there. I am super happy.

 

Now I think that really sums up my week. <3 LOVE YOU ALL

 

<3 Erica

Thursday Update

Hi! For the information of everyone. Today I went wig shopping just for fun... and John might kill me for posting this but I also made him try on my clip in bangs the other day (Pete Wentz?)... I think he might buy his own!!!

 

In other news, I got some info today from Lizzie that the fundraiser event will most likely be held on November 8th, 2013 from 5:30pm to 9pm at Glennpeter Jewelers but there will be more definite details to come, including invitations and such.

 

And I know I mentioned the Race for Hope in my last post but here is the link!! Remember that if you do it from a computer and NOT a phone that you can choose the $10 group rate. And, race or not here is a link for the t-shirts that the girls put on sale. They are just the best! (both the t-shirts and the girls) :-)

 

I am also going back to work on Monday, August 26th part-time! Very excited to use my brain for something more than to make phone calls to insurance companies, doctor offices, playing Candy Crush and watching Breaking Bad.

 

And, so far the only new news in the appointment world (the actual important stuff) is that I have a Temodar Teaching class next Thursday, the 29th at 1pm to learn how to use the drug and learn more about the side effects and what not. Still no start date.

 

<3 Erica

 

 

Radiation/Temodar Schedule

My first pic :) Start date to come!

Update with Dr. Weaver

Just so everyone is aware, Christina Andrade is most likely VERY happy that I am using an actual blogging website. Although I was not planning on posting my feelings, pictures, daily thoughts, etc, it is starting to intrigue me a little bit. We'll see.

But onto the real reason I am posting.

I had my appointment this morning with Dr. Weaver (neuro-oncologist) at Albany Med. Click here and you can check her resume out yourself! She was pretty freaking awesome!!

We went over the next 6-12 months of my life regarding the treatments, including both radiation and chemotherapy. We still don't have a start date which EVERYONE keeps asking so I PROMISE I will post it on here as soon as I find out. I'm just as anxious as everyone else, trust me, lol.

Some good news about treatments in Albany is that the costs of traveling back and forth from Albany and/or Hudson to Boston or to Pittsfield, MA, getting hotel rooms for my family, meals for my family, gas, other travel expenses, etc. but more importantly, being able to stay close to home and have all the support that I need close by!

Once we have a start date it will go like this:

1. Radiation to the spot where the tumor was (left frontal lobe so my left forehead and then back behind my hairline in a spot on that same side) for approximately 5 minutes per day, Monday through Friday for 6 weeks. The machine you lay on and go in is FAR FROM comfortable. I really encourage people to google it.
2. During these 6 weeks, I will also be taking a low dose of Temodar (the oral chemotherapy pill).
3. Then, I will have a 4 week break!
4. Next, I will be put back on the Temodar at a higher dose for 5 consecutive days on and then 23 consecutive days off. This will last for at least 6 months but may extend depending on how things are going.

During these steps, 1-4, I will also be meeting with Dr. Weaver every 1-2 weeks. I am also going to have bloodwork done every couple weeks (more or less depending on results and everything) and have MRI's or PET scans every couple weeks. She said I shouldn't have any problem seeing or talking to her or Dr. Chandra or any other medical professionals as I will be visiting the hospital so often. Good and bad news all at once.

She informed me of all my medications I will be on in addition to the Temodar, if not already, like Keppra (anti-seizure), Decadron (steroids), some low dose Ativan (anxiety), some anti-biotics, anti-nausea medicine and probably some other fun stuff. All of these things should be okay but obviously there are side effects and everyone reacts to everything differently.

I also found out the approximate cost of Temodar without insurance. It can add up to around $20k more or less per year. Just a little FYI, anyone interested in getting into the field.

What else? She said my MRI from last week looked good and it doesn't look like anything has grown or enhanced since my MRI right after surgery. Positive note!

Now onto the really fun stuff - SIDE EFFECTS!

• As with all radiation treatments, fatigue and weakness are the most common side effects. Apparently it will not kick in immediately but each week, it will build and get worse and worse. She did seem fairly positive that I should be able to take a nap on the really tiring days and should feel rejuvenated for the rest of the day. If not, that means something more serious is wrong.
• Definite hair loss in the spot being radiated on and hair loss/thinning in all the other areas where the radiation is coming at me, which is all over kind of from different angles and stuff.
• Definite skin irritation, redness, burning, etc. on the spot being radiated on.
• Overall hair loss from the Temodar, as I'm sure you were all already aware will depend. Already have purchased a wig, pro-active approach!
• Nausea from the Temodar is very common but that is why they prescribe the anti-nausea medicine with it to try and prevent it altogether.
• Blood clots are fairly common (30-40% of patients will get them) and I will have to just be aware of the symptoms and get it checked out and put on yet another medication to take care of that.
• Pneumocystis carinii pneumonia (PCP), in english, a rare pneumonia, which is why I will be on preventative anti-biotics.

She said I can probably go back to work if I want to, which I desperately do, not kidding! I have been going stir crazy here now that I'm feeling better after the surgery. So, I am hoping to go back to work on August 26th, part-time, see how it goes kind of thing. Thank you UHY for letting me do that. Also a big thanks to them for donating PTO to me and other support in ways of gifts, flowers, candy, e-mails, etc. Love them!

So I can drive, using my best judgment obviously. I think I am mature/smart enough to make a decision whether I feel well enough to drive or not. I know I have plenty of peeps willing to help me out! Also said I can "go back" to working out but need someone to monitor me like expect me back at certain time and if I am not, to worry. We'll see how that all works out!

So really, I just need to be careful in the radiation spot with the sun and beauty products, etc. They actually told me that I can only wash my hair twice a week. I might as well get that out there now before peopler start whispering about my oily-do behind my back! Lol. Also, my forehead rash won't be too cute.

FYI - I am currently not able to drink alcohol and I am not eating sugar. I'm not sure why everyone wouldn't want this life. Joke, obviously but just letting everyone know.

I'm sorry this is SO long. I am just trying to not leave anything out.

Side note on the Race for Hope that Alyssa set up on Facebook. I was going back and forth on signing up because I wasn't sure if I would even be able to do it. After today, I am leaning towards doing it but please KEEP IN MIND that some of my gals and fam are in the process of setting up an actual fundraiser night sometime in early November in Albany. We are hoping for the 8th but will keep everyone updated. We want it to be a fun, classy event where everyone can get together and support my family and me. I just want everyone reading this to know that if you are unable to travel to Albany for multiple weekends, that I would MUCH RATHER you be there for the fundraiser event. More info to come.

Unfortunately, my best girl +Laura Konderwich will already be in AMAZING Thailand teaching the little children but I know she will be there in spirit. And we can skype that night ;-)

Also, thank you everyone who posted on the Caring Bridge site. Those were all really sweet and thoughtful!

I hope I didn't forget anything. Any questions can start coming directly to me as well. I'm starting to feel KIND OF bad for my family, John, Alyssa, Laura and all of the other people who are getting non-stop texts. My phone works now and I am fully capable of responding :-) If you don't get a response, don't worry. I'm just "busy."

Love you all.
<3 Erica

Copy and Paste from CaringBridge website!

Quick overview, I had brain surgery on 7/17/13 in Boston at Dana Farber/BWH to remove a tumor and figure out what type it was.

We thought it was benign but it turned out to be an Anaplastic Astrocytoma (Grade 3), look it up if you want but don't let the Internet prognosis scare you! I'm young and healthy otherwise, so just stay positive!!

The next step includes treatment, 6-7 weeks of radiation mixed with chemo and an additional year of chemo (via pill form - Temodar). This will all be taking place in Albany at Albany Med and I plan on using the journal for updates.

"I have decided to be happy, because it is good for my health." –Voltaire

 

Post from 8/19/13 on CaringBridge.org website.

"Since my surgery, I have been recovering pretty well (thanks to Nonny and Pop's house) and I am now back at my apartment! Besides having to wear a headband in public, I feel pretty good today!

At the moment, we are working on getting the treatments started in Albany. So far, I have had the necessary pre-radiation MRI done at Albany last week and met my radiologist (Dr. Chandra) a few times. Minus the super annoying insurance coverage issues (potentially not being covered in Albany) we decided to go anyways to get the process moving!

Today I went in for my radiation mapping session. Such a weird experience with the whole mask they make for you (you can google it if you're interested) and overview of the radiation experience.

Wednesday I meet with Dr. Weaver, who will be my neuro-oncologist, in charge of all my chemotherapy treatments. I believe I will be meeting with her every couple weeks for blood work, check-ups, follow-up MRIs, etc. but I will know more as time goes on and will continue to post on here as I find out information. At this point, needles and MRI's seem normal!

After I meet with her, then both Dr. Chandra and Dr. Weaver have to get together and come up with a plan so that I can actually finally start!

As of now, I have been out of work for almost 5 weeks and will most likely continue to be out until late October. According to the docs/nurses, the radiation is every day (Mon-Fri for 6-7 weeks) for about 15-20 minutes but the whole process by the time you get to the hospital, park, go in, have it done and leave will be about an hour/day. Apparently radiation builds each day, so the first week I may feel exactly the same but then side effects will continue to worsen as the treatments go on. I will hopefully have an actual start date by the end of the week or early next week.

According to the doctors/nurses, I will lose hair in the spot being radiated on (extremely upsetting for a girl my age but hey, it is only hair right?!) but may not lose all of my hair from the chemo but everyone is different. Some people get really nauseous, some don't but chances of me being extremely weak & tired during the last few weeks of radiation and the following few weeks are very high. Side effects are also very different depending on the person so I just have to wait and see. My absolute LEAST favorite thing to do in the world, wait. But I have been getting damn used to that!

 

I hope this was all useful info and I'm not really sure how this site works but if anyone has any questions, I think there is a way to post them and then I can reply maybe. We'll see!"

 

<3 Erica :-)