Fundraising Ideas #1 and #2

If you're new to this blog, welcome and feel free to say hello!

Last week, I had the privilege of meeting with two New Jersey Light the Night representatives and got some fantastic ideas for fundraising this year. In one month, my team raised over $8,000 for the Leukemia & Lymphoma Society and I hope we will be able to raise just as much--or more--since I am beginning to fund-raise much earlier this year.

I've been posting on Facebook in a new Team Gillybean group I created a couple weeks ago. Here is the link: https://www.facebook.com/pages/Team-Gillybean/1471477149746725?ref=hl

My first ideas for fundraising:

 

Yankee Candle fundraising is new to me, but Team Gillybean/LLS will get 40% of the profit! That is a great deal! I have 10 seller packets, if you would like to help sell IN PERSON, otherwise, please use the link http://tiny.cc/teamgillybeancandles and don't forget to use our 

GROUP NUMBER: 99006317.

In-person fundraising ends April 14th, but it looks like online will continue through July.

Deadlines: Order by March 21st for Easter and April 11th for Mother's Day

 

And for my fundraising idea #3: Would anyone buy Jelly Belly jelly beans for Easter from me? I am thinking of ordering boxes of 10 flavors each, sell for $10 a box. If there is enough interest, I will do it! 

Thanks for your support!

Gillian

To shave or not to shave?

My hair is falling out more and more these days. It is everywhere! It's all over the backs of my shirts and coats, it's on the floor, in the sink, in my food... blech! Surprisingly, though, I still have enough on my head so that the thinning isn't noticeable.

I've read a lot of blogs/websites/articles that say people going through chemotherapy treatments will often cut or shave their hair before it falls out so that they feel "in control." Well, my co-worker said to me last week, "that might be true, but it could also be true that keeping your hair is another way you stay 'in control.'"

So, part of me want to get rid of my hair so I don't have to worry about it (and seeing it) falling out. But mostly, I want to keep it. I have an appointment this week with my wig shop friend and I want to see what she thinks, too.


My friend, Julie, writes a beautiful blog and if you have a moment to check out her thoughts, here is the link: http://juliehappenings.blogspot.com/. She wrote tonight about grief and while I am not strictly talking about grief in my post (or am I? The loss of my hair has surely caused me grief), this quote really stood out to me:

"No one is allowed to tell you what you should feel, ever. Or what you should do next. You get a free pass to make those decisions 100% selfishly." 

I hear opinions from others about what to do with my hair and it's fine, even if I do feel a little insecure or angry (see previous posts). I just have to remember that the decision is up to me and only me. 

But a little voice inside says...help? 

Results

My parents and boyfriend joined me at my appointment before treatment yesterday so we could hear the results of the CT scan from this week.

The results are good, the lymph nodes are still shrinking. We learned that the masses inside the nodes will never completely disappear because of scar tissue. It gets a little confusing here, because while this is good news, it still opens up a chance of having to go through two additional cycles after my next two cycles, when we were all hoping to be done by April. This would mean four additional treatments at the hospital, meaning two extra months. This is not what we were hoping to hear. I had a little cry while I listened to the doctor. 

It seemed odd to hear I could possibly get more treatments if the lymph nodes are still shrinking. But what we really want is to see is that the lymph nodes are unchanged from scan to scan, because it means the drugs have completely destroyed the disease and it can't get any smaller. 

So, if the scan after my next four treatments comes back unchanged from this week's scan, it means there is no more disease that could be killed and I'm done with treatments. If changes are reported, I will need to extend my treatments for two more months. 

It's not what we all wanted to hear, but it's best that my doctor prepared us for what could be! No one goes over 8 cycles (16 treatments), so even if I do have to continue, I will be done by June. 

The first thought that popped into my head was, of course, 'my hair!' I think I have enough to last me for two months, but four?! I guess it's time I go back to the wig shop-- just in case. 

Otherwise I'm feeling pretty good after yesterday's treatment. I felt a little light- headed last night while hanging out with mom, dad, and my friend Joan. I'm hungry this morning, so that's a good thing. Sometimes when I don't have a great appetite or what seems like my taste buds aren't working, I will eat Cheetos for the crunch and the flavor. I had a chocolate donut after dinner last night that tasted so bland! (And I sure do love my chocolate donuts!)

I think I'll find something to eat or just go back to bed for a while. Thanks for your support, blog readers and friends! 

Next treatment: Friday, March 14th. 

Blogging is hard

It is hard to keep up with a blog. I'm currently in an online course, which is about contemporary issues in Speech-Language Pathology (SLP). Everyone in the program has complained about this course, so I've been dreading it for quite some time. I even complain about it every so often because the discussion posts by my fellow classmates are just so dull and repetitive sometimes. However, I just finished my post for this week's lecture, so I feel a sense of accomplishment (although I wish it didn't take me longer than 30 minutes...it usually does). This week's lecture is about marketing for our business/private practice and it's hard work to keep up with promoting for yourself. It's not that I'm promoting myself or this blog, but I do like to update my followers regularly, which just hasn't been happening. I see my blog has been getting quite a bit of views, so I wonder who is reading. 

Everything has been going very well. Classes are good. I finally was able to send in my thesis topic for approval from my university, but I will have to wait a month before I find out if it's approved and I can actually start my study. It will be survey sent out to directors of aphasia choirs around the world. I'll have to present my data in April at my university and in May at the NJ conference for SLPs. I am even interested in starting a new project, involving the general public's knowledge of aphasia.

My graduate assistantship is a way to keep me busy 2-3 days out of the week. My supervisor wants to start writing an article together about voice disorders.

I've been editing a story that my friends and I wrote last summer on a road trip. This story is probably what makes me most "happy," because I'm totally immersed in editing and my mind is completely away from cancer treatments and its effects. I'm hoping one day I can send the story to an editor to be published as a children's picture book. It seems really far-fetched and silly to think I can do something like this, but...."You must do the things you think you cannot do." -Eleanor Roosevelt

Today was the first day I noticed my armpit hair is not growing. I don't mind that at all, but the fact is that my head hair is falling out more than usual and it is really starting to bother me. Everyone gives different advice. Some say to only brush my hair once a day, but I DO NOT WANT TO BRUSH MY HAIR EVER AGAIN! The brush/pick will only pull out more hair and I don't like it. A lot of people, including the nurse practitioner, have said "you won't lose it." And I just want to yell out, "how do YOU know?!?!" I think the best thing you can say to me right now is that "you look great, I can't tell you're losing it, or you will look beautiful no matter what." But saying I won't lose my hair actually makes me angry and anxious. I was very upset with the nurse who said that two months ago, because it just gave me false hope. Even if I don't end up losing it completely, I know that it IS thinning. And if you are one of those people, just know that I still love you very much and appreciate that you're thinking of me. :)

I have only been washing with baby shampoo/hair loss shampoo two times a week, brushing or running my fingers through it only after a shower, and clipping it back with hair clips to avoid  running my hand through it (especially when I'm nervous or doing a mindless task). I think I'll just continue with the clips for as long as I can. It looks terrible, but honestly, I don't care and I don't think anyone else should either. If they knew how I feel every minute of the day because I notice more hairs than usual on my shoulders and clothes and that my fear of being bald creeps into my thoughts every now and then, they would understand and let me keep my new bed head look!

It does make me laugh, though, because mom and I think the reason I've held onto my head hair for so long is the same reason why the unwanted hair on my body has been so stubborn all my life! I've tried professional and home laser treatments, waxing, depilatory creams, shaving.... and they have never worked for me long term. So, I say thank you to whatever weird hairy body genes I have for letting me keep my head hair for long throughout treatments!! :) :)

Next treatment: Friday, February 28th. (9 out of 12)

Port Authority

I thought I would share with you a little information about the port that is used to transfer all the chemotherapy goodies into my body. 

First, here is a picture:

It was hard for me to get a picture that accurately shows what it looks like, but this is close. 

There is a scar above where the needle goes in. There seem to be three little "balls" in triangle form that protrude from under the skin, but it isn't noticeable under my clothes. You can barely make out the catheter that goes up to the round scar on my neck. It looks like a vein. 

Today for the first time, I gently laid my hand over the port and felt it with my palm. I have been very hesitant to touch the area because it feels very strange to me. Sometimes I accidentally brush it with my hand and get startled. 

As I've mentioned before, the nurse sprays a freezing agent on the area (which sometimes burns) before putting in the needle (which does not hurt). 

I'm not actually sure what material the port is made out of, but from the way it looks (those three little balls), I joke that I feel like a robot. :) 

Next treatment (7 out of 12): tomorrow! January 31 around 1pm. 

Chemo brain

Wow I posted about being halfway there yesterday morning and I don't remember a thing. Talk about my first "real" experience with chemo brain!!! LOL :) 

Vocal rest

Shirt by Alyssa Brode Design!

It is day 3 since treatment on Friday (I call Sunday Day 3...) and as usual, this is the day that I have a sore throat and what feels like an empty stomach, although today I did have a good appetite. Also, I have some aches from the Neulasta shot given the day after chemotherapy. Today is a day I just stay in bed or on the couch doing mindless activities. I am reading Life of Pi though, which I'm enjoying. (I just started- no spoilers!) Today is also a day I try not to cry because my larynx feels so high and it hurts when I get choked up, because it literally feels like I'm choking!

But I don't have anything to cry about today. I had a great visit today from Christina and I can't say enough how much I love this girl and treasure our (almost 20 year) friendship. Now that she lives far out in PA, I enjoy every minute I get to spend with her!

My sister went back to college today. I start school on Wednesday, but I have the best schedule ever. Two online half-semester courses, one in-person class half-semester course (done in March) and a full semester PIANO course! I'm so excited! Since I will be finished with my required speech courses, I figured why not pick up a piano elective! I've been wanting to play again and now is my chance. 

Oh also this Tuesday, I am interviewing for my "dream" internship to take place in the fall. I'm going to spend a day observing and interview at the end of the day. 

And two more big things... 1. I am halfway through my treatments!!! 2. I still have my hair!! I never imagined I would hang into it for this long. Crossing fingers it will just thin out and I won't need to wear a wig, but if I do, that's okay too. I've got a great one picked out. 

Thanks for reading and have a great week. 

G