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.

Time for a Haircut

Last Saturday, August 25th, it was time to get a haircut. After my second treatment I became extremely paranoid about losing my hair. I thought that it might be easier if I cut it short first. Plus, I always loved having my hair short in high school. After I had my surgery I couldn't put my hair in a ponytail because my shoulder was so sore. So I decided... chop it off!

A friend of mine from college, Marielle, gracisouly drove Victoria and myself to my old college hairdresser in Amherst, MA. So many of you wonder why I went so far and the reasons to me, are quite clear. Cynthia, my hairdresser, is the sweetest, craziest, and most experimental hairdresser I have ever had. She knows me. And I needed a mohawk. Where else was I going to go?

On the way, we stopped at a tag/bake sale, bought some junk and had a snack.

When we arrived... the reasons became even more clear. In her new salon she had an arcade version the PacMan videogame as well as shelves of Hello Kitty paraphanaelia.

Victoria was Cynthia's first victim! In the chair, Victoria looked nervous as her many locks fell to the ground. Cynthia told her to hold on!

Besides all the hair on the floor...

She looks great!

I jumped into the hot seat next and gladly let Cynthia get to work.

Although plenty of you have shared your opinion on my mohawk... calling it a faux hawk, a lazy hawk, and just plain "boy cut," I assure you that Cynthia and I discussed a personalized version of a "modern mohawk." And believe it or not, I trust her over all of you. :)

So here it is!

Treatment No. 2


I wake up around 8:15am having dreampt that I was in surgery all night. During my dream, Dr. Gemis, my surgeon had an afro and I could hear everything he was saying while he cut me open. I wouldn't say that it was scary... it was just very unpleasant to have to wake up and actually go to the hospital.


We arrived at Surgical Day at 9:30am. We checked in and were told to go to the end of the hall to cubicle 6. Joan was my nurse. She's been through cancer twice. Back then, they left her port-a-cath in for 5 years!! She's extremely nice with a great sense of humor... which really helps.

I get my IV in my left hand and then we wait for almost 2 hours.



While I wait, Dr. Mom looks over my charts. We are really bored and cold and I refuse to be distracted by the TV. Another nurse comes over to gossip with Mom about the old days and people from the past, while I worry about if I'm going to be completely asleep during the port-a-cath procedure.


Dr. Gemis comes in to see us. He doesn't have an afro but his surgical bathing cap looks pretty rediculous. He pokes at my neck to see where exactly he wants to insert the port-a-cath. He says it shouldn't take longer than a half hour and that I will rest in the recovery room for about an hour. Good, good, let's get this over with. I go into surgery around 11:30am.

I wake up in the recovery room, like always, with a lot to say to everyone. Dr. Gemis comes darting in huffing that he didn't realize I needed the port-a-cath to be accesible for chemo this afternoon. He pokes my right shoulder a couple of times really hard while I tell him that I need to take his picture. The next thing I know, he's gone and the recovery nurse, Marge is bestowing all the best anecdotes for baldness... I'm saying "oh really" and "yea" and then she puts some stuffed animals in my arms and I'm wheeled back to good old cubicle 6 where lunch is waiting.

I look hot after surgery :)


Me and Mom have lunch. My turkey sandwhich is dry and I can barely swallow it because the oxygen mask made my mouth so dry. So instead of choking to death I have a spoonful of onion soup and opt for the vanilla ice cream.



Then, Joan comes for me. I'm late for chemo and everyone wants to go home. Tell me about it. Joan gives me a vicodin and wheels me up to the third floor. It's chemo time!




Joan and I say farewell. I think she was sort of glad to be rid of me. I named the dog after her and I think she took slight offense.

I sit in my recliner and Kay gives me some tylenol and tries out the new port-a-cath. It is so much better than getting stabbed repeatedly!!

I get my chemo and it's pretty uneventful. Kay was super tired as was I and Mom too. I took all of my drugs like a good girl and Mom took a nap. I had a Luna bar. And we went home. Like all of my favorite places, we pretty much closed the joint.

Welcome to Cancer Town

"Life is understood backwards but must be lived forwards."
-Kierkegaard, 19th century Danish philosopher and theologian


I have always loved to travel. It probably has something to do with my dad's past of truck driving. I think it might be in my blood. I don't know the history of my great-grandfather's moving company, William B. Kent & Sons, and I don't know whether or not they continued the business for three generations in order to survive or because they loved to drive. Regardless, I attribute my adoration of foreign places to their legacy of helping people re-locate.

I have a vague memory of sitting in the bunk of an eighteen-wheeler counting aimlessly on a wooden abacus. Where we were going, I had no idea. I just knew that I was in the dark cab and the vibrations from the pavement were soothing and that when we got there we would stop.

I think that it was the summer before I entered 5th grade that I took my first solo expedition at the ripe age of 10. I was going to take my first flight and I was going all the way to Hawaii to visit my best friend. I remember the excitement and fear mixing in my stomach and escaping my mouth in squeals at my father as he made take-off noises in an airport hallway.

Since then, I have been to Europe and Latin America, each time assessing and adopting aspects of the local culture while finding exciting and scary things around every corner. Like the time I was in a Scottish grocery store trying to recalculate the cost of peanut butter from pounds and pence in my head when a loud woman asked me accusingly, "Are you queueing it?" And I stared at her as she repeated and finally yelled, "ARE YOU IN THE QUEUE?" Until then I hadn't known that the noun queue could also be a verb. It was both scary and exciting to learn something new. Check out the queueing theory (or the theory of waiting in lines) here.

The one place I never daydreamed about visiting is a place that I now call home: Cancer Town. When the doctor first tells you "It could be a form of cancer" you take your first weary steps across the border into Cancer Town. You're a simple tourist like any other, looking up foreign words in dictionaries, trying to comprehend complicated survival rates, attempting to chart unknown territory. The day that the doctor told me sympathetically, "So, we're sure," I became a formal resident.

In Cancer Town, I'm learning aspects of a foreign culture I was never really interested in. It is still exciting but this time a little more scary. I know where all the hospitals are and where to park. I know what floor I need to go to for pre-op, lab work, x-ray, and chemo. I'm becoming fluent in the language. I could give a formal tour to a newly arrived resident.

Now that I live in Cancer Town where I read medical literature and books about how to stay positive and healthy, I can only take small trips to where I came from, to the outside world where not everything has changed. These trips include things like shopping, watching movies, having a friendly beer, or going to someone's birthday party. Usually a trip will only last a few hours before I must return for a doctor's appointment, to the reality that I am exhausted, or to take anti-nausea medication.

Although none of you can really live in this place with me, your short visits and kind gestures are thoroughly appreciated. All I can do is try to be the best hostess possible.

Welcome.

Treatment No. 1




I think yesterday was the strangest day of my life.



Welcome to the Commonwealth Hematology-Oncology Center!


Billy and I checked in about 11am. I gave them some insurance information, and we waited about 10 minutes before some strange man (I think he might be Dr. Sanz's partner) called me into the labratory. He took my blood and we talked about Rhode Island. He thought that my idea of counting all the viles of blood taken from me is silly because "it replaces itself." Stupid Doctor. Sometimes they just don't remember what it is like to be from the outside world, to not be a doctor, to be naive. Oh well.

I am weighed. 112lbs.


Next, Billy and I have a chat with Dr. Sanz. He says I may or may not lose my hair... yadda yadda... most of the stuff I have already heard from him or someone else. He tries really hard to be nice and make you feel comfortable and like you know what is going to happen to you when you take these dugs. And I laugh and he has this sad face of concern. I'm not sure if he likes my jokes.


I enter... dun dun dun... The Chemo Lounge. Billy has to wait in the waiting room because all 6 of the shiny, black recliners are filled with patients. It's sort of like a dormitory common room with a TV, blankets, books, magazines, a walk-man with relaxation tapes... except the RA's are nurses and no one is really talking. I like talking, so it was kind of intimidating. No one is really happy to be there... so what's there to talk about, I guess.


The nurse who gave me the sweet shot in my butt, her name is Kay, says "hi" enthusiastically. She calls me "Pat" which would usually drive me insane with rage, but she's a nice lady. She went through 6 months of chemotherapy when she had breast cancer and she reccomends that I get a sexy wig. I agree.


Kay peruses my arms for veins. Hmm... not much to work with. I ask her to please stick my right arm because I am left handed and wanted to write some things down. She sticks me in the wrist... the vein infiltrates right away, leaking the initial dose of Benadryl under my skin. Because I am left-handed there is more blood flow in my left arm. Fine. She sticks my left forearm in the hopes that I can use my hand to write with. The needle goes into the vein but the strong blood flow pushes it back out and it infiltrates. Damnit. Kay has to get Patricia (who also has my middle name) to try again, this time in my left wrist. She stabs... wiggles... no deal. I am about to cry.

The Chemo Lounge has completely emptied. Kay goes to get Billy. It has been 45mins.

Billy sits in the recliner next to me. Another nurse is looking for veins. The veins on the opposite side of your elbow are called the antecubital. Just use these, I plead. They usually don't like to use those veins due to the amount of blood work one receives. If you stab a vein too many times it becomes damaged. So, the third nurse pokes my antecubital and I don't even feel it and she pumps me full of 50miligrams of Benadryl and some Tylenol.





Billy asks, "Are you tripping yet?"

Yes.




Me and Kay: Happy that I'm on drugs and not crying.



The chemotherapy regiment that I am taking is the standard ABVD mixture of 4 drugs:

Adriamycin (which causes hair loss and infertiliy; it can also cause heart damage in large doses)

Bleomycin

Vinblastine

Dacarbazine

The first 2 are administrered separately over a period of about an hour. The bleomycin comes in a small IV bag and the bright red adriamycin comes in a large syringe. The second 2 come in a large IV bag and take about an hour.


Dr. Sanz chillin in the Chemo Lounge

Dr. Sanz comes in to apologize for all the poking that his nurses did and lament that I must have a port-a-cath surgically inserted into my collarbone to avoid another epic vein hunt. This tiny device is inserted under the skin and acts like a duct to a major vein. This way, they can just stick the IV in and be sure the drugs are going to the right place.


Probably because he was the youngest person in the office that day, the nurses loved Billy. I also think they were attracted to his mysterious philosophical side. Billy has huge guts to accept the challenge of Chemo-Buddy guinea pig. He is the only person I can watch bad horror movies with and he had to mute the excessive screaming so as to not scare the nurses. He makes me laugh at all the right times, carried everything, and photo-documented.

Billy gets the Chemo-Buddy 5 stars

l l l l l

When everything was finished, I checked out with an appointment for August 22nd. On that day I will have the port-a-cath installed (is that the right word? gross.) and have my second round of chemo immediately after. Geez, having cancer is like a full-time job. Well, at least part-time.

Me and Cancer Bear #1
(They told me that I get another one when I graduate)

It was like Christmas when I got home at 3:30pm! As if it wasn't enough to have spent the entire day at the hospital I had a pile of mail in front of me... good mail! Thank you to everyone who made the day bearable :)