The End in Sight?

It is probably too early to be thinking about the end, but I can't help it.

Lately, I think a lot about finishing this second cycle of treatment, going for my second PET scan next week, and having Dr. Sanz say, "It was nice working with you. Hopefully we won't have to work together again." I think about skipping radiation therapy altogether. It's an elaborate fantasy, but one that I can't stop having.

I have been a good patient. I have stayed positive. I have promptly attended all of my appointments and treatments. I have tried to see this as a small set-back in a life that will survive many more years and better times. But to tell you the truth, all the positivity and hype over things I had never planned on doing are wearing me out. I'm bored of feeling tired; I hate feeling out of control-- like my doctor's and nurses are planning my life for me; It's embarassing having chemobrain when I am supposed to be a graduate student of politics; And I have had enough instantaneous emotional break downs. I'm ready to recover already.

So, since I can see the end in sight in my fantasy (regardless of how far away it might really be) I've been reading about relapse rates. I'm trying to figure out my odds... the odds that I have done my time as a cancer patient. Although I was unlucky enough to develop a disease that aflicts only a few thousand women each year, I would like to be lucky enough to not have to go through it again.

It looks like about 30% of Hodgkin's Lymphoma patients experience a relapse within 10 years. This is good news for my immediate future. Unfortunately, I have come to the conclusion that my life will be never be the same as it was before I had cancer. For the rest of my life, no matter how healthy I am, I will always be at a higher risk for other types of cancer. Non-Hodgkin's lymphoma, leukemia, melanoma, stomach and lung cancers, and breast and uterine cancers tend to occur after 20-30 years of a patient's Hodgkin's recovery. The risk of developing a second type of cancer is higher in younger people (like me) who also have radiation therapy and will probably happen sometime when I am reaching the age of 55.

So, life isn't all gumdrops and lollipops and probably won't ever seem that way ever again, like it did when I was kid swimming carelessly in Kingston Lake. And I can't really worry about what life is going to be like when I'm 35 or 55. All I can do now is show up on time for my PET scan next week, hope for the best, and carry on my life at age 24 in the best possible way.


Relapse Rate Article on ABOUT.COM

The Story of how I got Bald

By: Patricia Kent

Photographs courtesy of Melissa Saulnier

It was a rainy day. I was trying to mentally prepare myself to get to work when the phone rang. Auntie Paula spoke from the other side. We were talking when the topic of wigs came up. I told her I was pretty dissapointed in the selection I had seen but my hair was falling out and I felt trapped. She told me that she had found the website of a salon in Boston. I said that I would like to try one more place but that I wasn't sure I would ever find anything that I really liked. She gave me the phone number and I made an appointment for 2 days later.

After work on the day of the appointment I picked up my mom, my cousin Melissa, and Auntie Paula. The Buick Lounge Lesabre took us straight onto Boylston Street and right into the perfect parking spot... with 20 minutes left on the meter! We walked over to Newbury Street in search of "The Salon @ 10 Newbury." We got into the tiny elevator and pushed 2.

When we got inside we met with Patricia, the wig professional and stylist. She took us into her office and I sat in the hot seat. She had to search for a third chair because I had brought with me quite the entourage. I apologized, but there wasn't much I could do, they were all so jealous of my situation.

You wouldn't believe it, but the first wig I tried on... looked like me!! I was so excited about it and relieved. Patricia said that she had another appointment that evening... but if we went for a bite to eat she could fit and style the wig as well as shave my head when we got back! I couldn't think of a better deal. So we went to the Parish Cafe for dinner.

The Shave

Scared face 1 / Scared face 2 / Scared face 3

Even mom and Auntie Paula were scared. I think they were more scared, actually. :)

Then it was time to rock out. HERE'S YOUR MOHAWK!

I'm not going to lie, the entire experience was extremely liberating. Even if my hair does grow back... I might just keep it like this. :) I look much better than Brittany Spears.

After the most exhilarating hair cut of my life I had to put the wig on so we could cut and style it the way I wanted. It was a delicate process.

Patricia was the nicest woman in the world. She really tried to make the wig look like me. She watched me play with it so she would know how I like it to look. She asked a lot of questions. So did I.

In the end... everyone was excited!!

Thank you, Patricia for your hard work and compassion!

I look great! (You do too!) Talk to you soon!!

The Story About Wigs... continued...

It's also cool to send me your own ideas for wigs. Here are some recent favorites!

Option Orange / Option Awesome

Assorted Good Options / Cowboy Option

Thank you, Nate-in-Alaska, for your valuable ideas.

The Story About Wigs

Faith

So, going bald isn't a big deal. Millions of men do it every year... every day probably. But, I have to say that I sympathize with them now. Now I know what it feels like. It's unnerving and just gross. I mean, I'm sure it's going to be great to be bald. I won't need to use an excuse when I don't blow dry my hair. My hair won't get in Todd's face when I'm sleeping. And I won't have to deal with the heavy mop feeling on the back of my neck that I hate so much. Don't get me wrong, I have loved having short hair. It makes my eyes look bigger, it feels great, and it's low maintenance. But I'm afraid it is time to say goodbye.

Long 1 / Misty

I have had the good news from my insurance that they will FULLY cover any wig (or wigs) that I choose. Therefore, I have been very meticulous in my search... since I might as well pick one that I like no matter what the cost if someone else is paying.

Short 1 / Short 2

I have been to a number of synthetic wig places. There have been a few that I like and many that I don't like. It's been hard to find a mid-length one since mostly old people go bald and like to keep their hair short. The problem with synthetic wigs is that they use a lot of fibers which makes them thick and heavy and you can't use heat when styling them.

Short 3 / Revenge

You have just seen some of the many synthetic wigs I have tried on. You might like to know that I have an appointment to try on some real hair wigs this week. So if you don't see one you like... don't worry! I will be hot and sexy in no time.

Sage / Siren

Please go to the bottom of the page and vote on your favorite wig! :) It's fun, do it.

Attempting to Relax: Beach & Friends

Relaxing is harder than you think...

I spent some time in Seabrook, NH under the great hospitality of my Uncle Chipper and Auntie Kellie. We had bahama mama's and lots of fun! I didn't go swimming but I got wet!!





I got to hang out with Victoria and I finished a novel my Aunt Anne lent me titled "A Map of the World."


It was also my parents' wedding anniversary... so we took a cute group shot and had cake for them!
Next weekend, some of my friends that I met in Argentina came to visit me and we had a great weekend!! My Uncle Kevin had an incredible barbeque...



We went on a ferry ride in the Boston Harbor...



Nikki (MN), Dan (PA), Patty (MA), and Stewart (TX)
Photograph courtesy of Todd Robertson

I'm sad that they're gone!! I love you guys!! Thanks for traveling so far and wide to see me!!

Treatment No. 3
One more before another PET Scan

Auntie Paula picked me up around 10am. I checked in and it took 2 hours for them to access my port-a-cath and do my blood work. And I thought it was supposed to be quicked because of this swollen thing in my shoulder. It hurt when Patricia initially stuck the needle in... but what could I expect. I squirmed and made a lot of gruesome faces... mostly because the whole thing grosses me out... and Patricia told me that there is this numbing cream I can get a prescription for... hey, maybe next time. Oh shoot, Dr. Sanz won't be there. Oh well.

So I finally get hooked up around 1230 and I'm starting to feel bad for Auntie Paula because she must be hungry and bored. I chat with the old folks. Some of them I have seen 1 or 2 times before and they're funny and like to make jokes like me. The old man's port-a-cath to the right of me hasn't been working for the blood return but works for the chemo treatment so he has to go down to x-ray afterwards to figure out what the problem is. Ugh. Cancer is so rude. It doesn't hurt and there are minimal symptoms but it causes such a maze of other problems. It's really just rediculous.

Kay hooks me up and I attempt to take a nap. I brought a granola bar but the thought of it makes me nauseas. Every time I open my eyes the IV bag looks half full. What a nightmare. It's also freezing.

Finally, it's over. I go home and sleep for the rest of the day... only to wake up to Auntie Paula bringing homemade macaroni and cheese! I always eat a ton after treatment!!

Persecution

I am wrought with anxiety. My body is tense and my mind cannot rest. This is what it feels like to be out of control, to take what is dealt to you with as much grace as possible. This port-a-cath aches and is swollen and I hate it while at the same time trying to learn to live with it. My hair is falling out and no preparation or joke can make it feel any more normal. Every moment is a battle... a struggle to close my eyes and relax, a campaign for sleep, torture to have so much time and reason to reflect.

I have been to 20 appointments in 9 weeks.
That's 2.2 appointments every week.