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
