Thursday, August 23, 2007


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.

Friday, August 17, 2007

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.


Thursday, August 9, 2007



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 :)

Monday, August 6, 2007

Days before treatment begins...

I feel as though I have to apologize to all of those folks that I have been avoiding like the plague...

I have spent the last days before my first treatment at my Auntie Anne's house in North Hampton. Todd and I drove up on Saturday afternoon and stayed until Sunday. It was the most relaxing and "peaceful" and fun! thing I could have done. The past week has really just felt like "the meantime"... the time between now and Wednesday... and this weekend really took me away from the madness of waiting and wondering what treatment will feel like.

I have also been doing a substantial amount of laundry. And I signed up for NetFlix, so if anyone wants to come over and watch movies... or fold... ?

Thank you to everyone who has sent cards and commented. It really means a lot to know that you are thinking of me and my family. We'll get through this... but for now it's just "the meantime."

Wednesday, August 1, 2007

Monday July 2nd, 2007
I am at soccer practice. It's almost 2pm. I have just finished taking attendance. I am sitting in the grass stretching when I notice a tiny deer tick on my calf. Naturally, I freak out. I take the opportunity to see the doctor and receive antibiotics for lyme disease on Worker's Comp.
Because I am so good at managing my time, I decide to get all of my medical problems out of the way in one day and drive from Lawrence General to the PMA Walk-In Clinic in North Andover to have a swollen gland looked at. At this point, I had had it for about 3 weeks. Originally, I thought it might be from allergies with the pollen count being so high. Then, I began to think it might be my thyroid. The doctor takes one look at my visibly asymmetrical neck and immediately infers that I have lymphoma.

I say, "Oh, OK. What's that."

He replies, "Cancer."

I ask, "Oh... What should I tell my Mother?"

He said that it would have to removed for us to be sure.


Tuesday July 3rd, 2007
I find my Dad waiting for me in the classroom where I teach Beginning Black & White Photography. My primary care physician, Dr. David Farzan wanted to see me immediately. So, we go back to PMA and he orders blood work and a chest X-ray. This all takes less than hour. Dr. Farzan looks at the X-rays that day in the middle of a crowded hallway full of desks and nurse practitioners and filing cabinets. We get our first look at the swollen cancerous lymphnodes in my chest (also known as the mediastinal region). We would later find out that it is about 9.4cm. in diameter (that translates to about 3.7in.).


Wednesday July 4th, 2007
I participate in Field Day. I don't see any fireworks. But I eat a festive sno-cone.


Thursday July 5th, 2007
At 9am I have an upper body CT scan which takes about 5mins. They inject me with some sort of dye that makes my entire body really hot. Then it's over. They take more blood, weigh me, take my vital signs and tell me all about what the surgical biopsy of my right supraclavicular will be like. This is the day I realize how much weight I have lost (5lbs., but still).


Friday July 6th, 2007
I am having chest pains from anxiety. I can't eat anything for 6 hours prior to the surgery. I'm starving. We get there and they give me an IV. We wait about an hour. The anesthesiologist freaks me out by telling me that it is going to feel like I had a glass of wine. I almost start to cry. She corrects herself and says, "OK, maybe two glasses of wine." I am about to burst into tears.

Enter Dr. Gemis, general surgeon. He reassures me that I am going completely to sleep... because if I even flinch, he could damage a major artery. Phew. Fine by me.

When I wake up I am full of questions but the nurses make me rest and eat crushed ice. I never see Dr. Gemis again but I hear that he told my parents that he removed the entire lymphnode.

I spend the weekend sleeping, shopping, and eating ice cream. It's not so bad. My neck looks symmetrical (aside from the tape holding my skin together) immediately.


Wednesday July 11th, 2007
I visit Dr. Gemis and he removes the tape from my wound. It looks pretty gross, but I suck it up and go without a band-aid. My Dad always says it's better for the air to get to it. Dr. Gemis tell's us that all results show that I have Hodgkin's Lymphoma (nodular sclerosis type, to be exact-- which is the most common and least aggressive type). Hodgkin's Lymphoma is a cancer of the blood like leukemia and multiple myeloma. These cancers affect the way the body makes blood and provides immunity from other diseases.
About 8,000 people are diagnosed with it each year in the United States (population: 301,139,947). Talk about lucky.

Dr. Gemis's assistant, Kristen, makes me appointments with a hematologic-oncologist at Lawrence General and a radiologist at Holy Family. These appointments are in 2.5 weeks.

I can't wait that long and call The Dana-Farber Cancer Institute in Boston on a whim. They make me an appointment with a Hodgkin's Lymphoma specialist named Dr. David Fisher for next week! I am really excited to speak with someone who knows my disease so intimately.


Tuesday July 17th, 2007
My Mom, Todd, and I venture into Jamaica Plain in Boston to the Faulkner Hospital to meet Dr. Fisher. He is awesome, answers all of our questions, and tells me I'm smart. I ask silly questions like "Is a Reed-Sternberg Cell the same as a lymphocyte?" and relevant questions like "Do you think I have bulky disease?" (You can find the meaning of these and any other words you don't understand in my "Things you never really wanted to know until you got Hodgkin's Disease" entry... which is in the works).

He also speeds up the entire process by scheduling me an upper body PET scan which will help us to stage my disease.

Monday July 23rd, 2007
This time we actually visit the Dana-Farber Institute in Boston. Again, I can't eat for 6 hours. I am injected with a radioactive, sugar-based liquid and left to sit behind a heavy lead door in a room all alone for 45mins. I am actually temporarily radioactive... Which feels like nothing and I watch World's Dirtiest Jobs and take a 20min nap. Then they take me into the scanning room where I have to lay in a tube for 22mins with my arms over my head. In the beginning, I imagine that I am taking a nap in the cabin of a boat on the ocean. It's really relaxing to listen to the waves crashing against the windows.

Then, a voice comes on the speaker and says, "You're doing great. 9 more minutes." Then, my left arm falls asleep. It feels so heavy and dead I begin to think it will never come back to life. I start to squirm and whine. I ask if I can put my arms down and no one answers me. Finally, it's over and I have to lift my left arm with my right arm because it is so heavy and immobile.

Then I eat Teddy Grahms and Sun Chips. We meet with Dr. Fisher again and he tells us that I have Hodgkin's Lymphoma Stage IIA. That's a good thing. It means that it has spread to two different sites (my neck and my chest) but has not spread below the diaphragm. This means that so far, my liver and spleen have been spared.

We go to Bugaboo Creek and drink white wine and eat Snowboard Chicken. Todd has Captain and Coke. And we keep Mom out too late driving on the mean city streets of Boston.