Alese Coco's Journey through Hodgkins Disease

HomeAleseWhat is HodgkinsMedical HistoryHints/Tips

Tuesday, February 28, 2006

No More IV Pole! I'm Free...

While I was in the hospital, it hit me that the only thing I write about is chemo and hospital stuff. So, this update is going to be a little different, I’m going to share a little more about myself and let you get to know me better…


My faith is so important to me, my family comes first in my life and I would do anything for them.

Some people say, “you can never be too rich, too thin or too pretty” well, I have my own variation of that: “you can never have too much faith, too much hope, or smile enough” I would rather try in find the positive in any situation, rather than dwell on the negative.

I definitely have times when I feel low or sad, but I don’t let myself dwell on it. I give myself a small window of time, and then I move on. My biggest inspiration is my Grandma Coco; she was the epitome of a virtuous woman and to be half as great as she was would be an awesome accomplishment. I am also lucky to have my Grandma Smith; she's a loving, genuine soul and someone I look up to.

I love school, and I can’t wait to go back! I am so the kid that sits in the front row and almost always has the answers. I want to be a nurse, I’m still deciding on which field. I love cooking and baking. I think going to culinary school would be a great experience.

I don’t get star struck by “celebrities.” I like people who stick out for all the right reasons. I detest those girls in the public eye who send the message to America’s youth that it’s okay not to have morals, values or brains. To all my special girls, I challenge you never to compromise yourself or integrity just to fit in.

I think my Dad is the funniest person on the face of this earth. My Mom, she just stuns me, she is such a woman of God and I celebrate her many accomplishments. I find my sister to be the most beautiful, and unique person I have ever encountered... and my brother has the quickest wit and more talent than any 10 year old I’ve ever met.

I refer to my dog Lola, as “my child.”

I love cars! My car blew a head gasket when I was 16 and rather than taking it to a shop, my Dad and I rebuilt the engine. Nothing bugs me more than when my car, or the car I'm driving makes bad noises. On the upside I can usually tell what’s causing the bad sound. I can change my own brakes and tune up my own car! Swear!

I believe that life is a blessing, no matter what cards you are dealt. I also believe that most people are good… and most importantly Benedryl can fix almost anything :-)

I admit that Ashlee Simpson’s “Pieces of Me” is still my favorite song. I love music, I live alone, and I think I sing more than I talk. Whoever the person is who invented the iPod deserves some kind of award.

I love being girly, and I have a confession: I am obsessed with purses, shoes and big-no-HUGE sunglasses. I am not kidding.

I am not afraid of carbohydrates, I could live off of ice cream and popsicles, if you think I’m exaggerating, check my freezer.

My birthday is March 10th, but I don’t just celebrate that day... every year I have a countdown, and I own the month of March, it’s more like a birth month.

I am so guilty of burning CD’s with only one song.

I love infomercials, I don’t know why but they suck me in every time.

Anyone who knows me really well knows me well, knows why Thursday is my favorite day of the week.

I am modest. I can’t lie to save my life. I will never ever complain about a bad hair day, if anyone complains about their hair to me, I’m so not listening. I am still a big kid, when my siblings and I bicker, the words, “not-uh!” have been known to come out of my mouth.

...I think that covers it. At the end of the day, I am living proof that God is good even when bad things happen.

Okay, back to health stuff… I got to come home yesterday! As soon as I was admitted my Mom flew out here to be at my side and be my advocate. Thank you Mommy. I am feeling almost 100% better I just have this cough; I’m annoying myself with it. Hopefully it will go away really soon. Other than that I’m doing okay… The only things I have encountered with this clinical trial is weight loss (see positive) and it tends to dehydrate me a little bit and give me cotton mouth. My body tends to get aches and pains when my fluids are low. I think this trial shows a lot of promise, and I’m really excited to see what’s in store. I promise to keep you posted.

Fight 2 Win,

-Alese

Thursday, February 23, 2006

I’ve Been Really, Really Sick…

I developed bronchitis last week and I’ve been in bed all day for the last six days. I’ve gone through two different oral antibiotics and I’m not any better. I’m actually worse. My parent’s and I had a conference call with Sloan Kettering this morning and they’re going to admit me.

I don’t know how long I’ll be in the hospital? My Mom is on a flight to New York.

I ask for your prayers, I really don’t feel good.

-Alese

Wednesday, February 15, 2006

New Trial Started…

I left Madison for NYC at 6:00 Monday morning… The blizzard that hit over the weekend dropped 30” of snow and I just didn’t feel safe driving into NYC. So, I took the train into the City and a cab ride that would rival many amusement park rides from Penn Station to Sloan.

The clinical trial I’m participating is a called Bortezomib. I received my first treatment on Monday morning around 9:30. and had blood drawn and vital signs taken every hour until about 6:00 p.m. I arrived back in Madison at 8:30 Monday evening. I’ve had to follow this same protocol with the two other trials I participated in last year. I have to return to Sloan Kettering every day this week for treatment, but should only be at there for a couple hours a day.

Dr. O’Connor has used Bortezomib to treat a Non-Hodgkin’s Lymphoma, called Mantle Cell Lymphoma; the patients who received this medication experienced a high rate of success. There hoping for the same sucess in treating Hodgkin's. So far, I have not experienced any side affects from treatment, outside of just being tired from commuting, I'm okay.

Thank you for your continued prayers.

Fighting 2 Win,

-Alese

Saturday, February 11, 2006

if you double click on the picture, it get's larger...


I'll always be a California girl!



Oh how we love our big sunglasses. Someone told me that I need windshield wipers for them, lol. I love them.



I went down the pole! I'm not gonna lie, I did not want to go! But it turned out to be fun :-)




The most beautiful animal EVER! (she completes me)

Tuesday, February 07, 2006

I’m Homesick…

My Dad flew in at 6:00 this morning, just to be at my appointment (Dad you’re awesome)… I asked Dr O. if there was a possibility that I could move back to LA, and still remain under his treatment and care. He said, I can, but there was some concern that all the traveling to and from coast to coast might be too stressful on my body. I ask for your prayers in making this decision. I miss my family, friends and the weather! I miss Lola. However, the bottom line is, I’ll go wherever God wants me.

I had a very scary experience the other night; I had an allergic reaction to a medication, so, I went to Urgent Care at Sloan Kettering. At first, I felt a little numbness right under my ear, and then it spread to the left side of my face, then my whole face and my neck, then my arms and my legs, it was really scary. It felt like I had gone to the dentist and she put Novocain everywhere! They figured out what it was and I went home a few hours later. I am thankful that it was not worse. The cup is always half full and never half empty.

I am starting a new clinical trial on Monday. Dr. O. is the National Chair for this trial, so I know I’m in good hands. After my checkup with Dr. O. was over, I sent to the lab and had a bunch of tests run to make sure that body can handle the regimen The drug used in this trial is a protein inhibitor, which means that it has a very low toxicity. So, I won’t lose my hair, and I shouldn’t get too sick, but this drug could be the one that could bring remission. We don’t know, and that’s why they want me to try it. I don’t remember the scientific name, I put that next week

The regimen is 5 days on, 11 days off, 5 days on, 11 days off, and so on… I’m looking forward to this trial, it shows great promise and Dr O. has kept his end of the deal by promising that I won’t lose my hair. The other day somebody referred to me “that girl with the long blonde hair” I was ecstatic! I don’t remember the last time someone commented on my “long blonde hair”. Thank you to the woman who made my day.

When Shallyn and I were flying back to the East Coast this past December, there was a girl sitting across from us on the plane. Shallyn and I were talking about scheduling and such and she heard us say Sloan Kettering. She whipped around and said, “You go to Sloan?” I confirmed what she heard, and then she said, “I volunteer there. I had cancer when I was younger.” She then proceeded to tell me that she had Hodgkin’s! There was an empty seat between Shallyn and I, and I told her, “You have to come sit with us!” She did, and we talked the entire flight and time went by so fast. Her name is Abby, she’s five years in remission and such an inspiration to me. See, everything happens for a reason. I’ll post more pictures soon, I promise! Thank you to everyone, for all of your prayers and support!

Fight 2 Win,
-Alese