Treatment No. 6

I woke up late. It seems as though they make my appointments earlier and earlier each time. Oh well. I have toast with jelly for breakfast. Auntie Mary arrives and me, mom, and Mary head off to the hospital.

Patricia accesses my port-a-cath. No blood return. Darn. Manny does my blood work. And I see Gloria, the nurse practicioner. Mom and Mary stay in the waiting room since the lounge is crowded.

In the chemo-lounge, Kathy tells me that she is going to use a vein instead of my port-a-cath, just to be on the safe side. Whatever. She stabs me a total of 3 times. Plus the needle still inside my port-a-cath, plus the stab wound from Manny... that's 5. And I'm all bruised.

Kathy pumps me full of drugs and I just sort of stare off into space. Some Presidential Address is on TV but I can't comprehend it, and trying to only makes me nauseas. I avoid looking at the dripping IV bag by rotating my gaze from patient to patient around the room. Boring. Then, Dr. Sanz comes in with a young woman and I hear him tell the nurses that she has Hodgkin's. I wanted to talk to her but I also didn't want to scare her. I remember wanting to talk to everyone on my first day and being discouraged by all the old, sleeping faces. But still, I couldn't bring myself to butt into her business.

After my treatment, which went by surpisingly fast, I was sent to have a flow-study done on my port-a-cath to put the nurses at ease. Mary, mom, and I went here and there all over the hospital trying to find where I was supposed to go. Finally, I admit myself and head into the "Short-Stay Unit," put a johnny on and get into a stretcher. Sweet. From here, they wheel me somewhere far far away into an elevator onto the X-ray floor and into a narrow hallway. A nurse introduces herself and I explain what's been going on with the stupid port-a-cath. Then the doctor comes out in a Patagonia fleece vest and I re-explain to him and he says that he really likes my hat and "Are you a boarder?" And so the entire time he is injecting dye into my port-a-cath and watching it flow on the monitor we talk about mountains in Vermont and New Hampshire and Argentina and Chile and France. It was sweet. And my port-a-cath is fine.

So I'm wheeled back down in the elevator and someone brings me some cold apple juice. And I just want to fall asleep behind the privacy curtain in my stretcher all alone and sterile and chemo-ed-out. But Mom comes in and I get dressed and we have to go.

See ya, hospital. Outside we have to take our picture so while we are posing Sue Patanaude says hello. Hello!

Finally we get home and I sleep from 1-5 or 6 I can't even remember. And I eat delicious Shepard's Pie that Auntie Kellie brought over. Watch some TV. Help Victoria study. And it's back to bed.

Another treatment down and 2 more to go.

Thinking more about radiation...

First of all, did you know that chemotherapy can also cause secondary malignancies? No one told me that. But I guess I didn't really have a choice. I still would have liked to know.

For Hodgkin's patients, the most common secondary cancers in order of prevalence are: Breast, Thyroid, Bone, Colorectal, Lung, Stomach.

Breast cancer is the most common cancer among women, and the second leading cause of cancer deaths in women (after lung cancer). So, I'm interested in finding out how radiation will affect my chances of getting breast cancer.

A normal woman's risk of contracting breast cancer increases with her age. By age 30 a woman has a 1 in 129 chance of getting breast cancer. By age 40, 1 out of 68 and by age 50, 1 in 37 women will have breast cancer (stats found here).

However, the older you are, the less aggressive the cancer usually is... so you have a higher survival rate (younger than 45 = 81%; 45-64 = 85%; 65+ = 86%). Which is good, if you plan on having breast cancer.

As a group, Hodgkin's patients of all ages who received any type of treatment were at a fourfold increased risk for breast cancer, compared with general population rates. Hodgkin's patients treated with radiation at ages 24-29 were at seven times the risk (found through a study of 900 female Hodgkin's patients treated between 1961-1990). SEVEN TIMES THE RISK. uuuggh.

The problem is putting faith in our medical technology. How far have we come in the field of radiation since 1990? Dr. Mauch told me to cut the figures in half to find today's secondary cancer rate... but do I believe him? Where's his proof?

Treatment No. 5

The day before treatment I went to a 630pm yoga class. Todd arrived at my house around 745-8pm. We watched Night at the Museum and then we went to bed. It's always early to rise on treatment day!!

We woke up bright and early and had a little Dunkin Donut breakfast. I had a small cappucino and an old fashioned donute, Todd had a breakfast sandwich. It was yummy. Then it was off to the hospital.

Todd and I spoke with Dr. Sanz. He asked to see my bald head. And we chatted about my last scan. In his opinion, he'd rather see me skip radiation. It's nice to have another perspective but it also makes it a harder decision.

I went into the chemo lounge where Kay tapped into my port-a-cath and got a blood return! Hooray! And so the treatment began. Before I was injected with any chemicals, I asked the nurse if she could push the Benadryl more slowly so that I wouldn't get so dizzy. Instead, she asked me if I would like to decrease my Benadryl altogether! Sure! It made for a much easier experience since I wasn't so dizzy and could carry on conversation a little more easily.

Dr. Sanz came in to give me a copy of the radiologists report of my second scan. It reads: "Currently, there is no evidence of FDG-avid disease." That means: THERE IS NO MORE CANCER.

About half way through my treatment one of the other patients that I share the chemo lounge with every-other Wednesday began having an allergic reaction to one of the drugs he was receiving. All the nurses rushed into the lounge, got him an oxygen tank, Dr. Sanz ran in with his nurse practicioner, Gloria. They put up a partition so we couldn't see what was going on. It was scarey. Eventually, Ed came back to Earth. They stopped his IV and started him on just saline. They took down the partition.

We got home around 12pm and I took a nap. When I woke up Todd made me peanut butter toast. It was a pretty lazy day. We watched Blood Diamond. Auntie Nancy brought over dinner and we ate with my parents.

Todd had to leave around 8pm. I watched Kitchen Nightmares with Dad, Billy, and Victoria. And went to bed.

And so ends another chemotherapy treatment.

Scan No. 2

A looong Day in Boston...

My Dad and I left the house around 9:30am for a scan appointment at Dana-Farber for 11am. Plenty of time for a 30 mile drive. That's what you would think... except we hit practically stopped traffic right around the I-95 exits on 93. I was calm, thinking that it would lighten up after we passed 95... but it didn't. I planned on calling radiology to let them know I might be late. We crawled all the way to Storrow Drive. Unfortunately for us, this unusually late-in-the-day morning-commute traffic would set the pace for the rest of the day.

We got lost. Although I have been to the Dana-Farber building before, for my first of many scans to come, nothing is ever as you remember it in Boston. Of course, the first of a few imperative side-streets that we needed to take, Jimmy Fund Way, was closed. Luckily, Dad's eyes aren't as bad as you might think, and he spotted the DETOUR sign hidden behind some landscaped-city-foliage that would lead us to the parking garage.

Ahh, the parking garage. We made it! Not quite. We circled into the bowels of the cement basement. Around and around practically skimming the suspended cieling pipes we drove, down, down, down. There wasn't a single spot. As we started to panic a crew of parking garage gurus flagged us down and created us our own temporary parking spot of orange cones. We jumped out and ran to the elevators.

After stopping at a few different receptionist desks that all looked the same I finally checked in where I was supposed to be... 10 mintes after 11. I was called after about 15 minutes. I left Dad on a couch in the waiting area with his WantAd magazine.

In the room, behind the lead door, the nurse explained the procedure. She injects the green radioactive liquid into my veins, I wait for an hour while I become radioactive, then I go in for my scan. It's probably my favorite procedure since it is so low-key: a tiny needle, no blood work, no blood pressure... just resting in a room with a warm blanket and the TV. Nice.

As I watched her prepare the needles I noticed that the radioactive syringe came from inside a heavy lead safe that she had to lift with two hands. The syringe was also encased in a lead sheath! This procedure was getting cooler by the minute. She wrapped my arm in a flourescent bandage and left. I watched some terrible daytime judge shows for an hour.

I went in for my scan. I asked to keep my arms down since they fell asleep last time and made me extremely uncomfortable. I just laid there sometimes pretending I was in the cabin of a boat on the ocean, sometimes trying to remember song lyrics, and sometimes just staring at the machine and listening to the noises it makes. It was over before I knew it... 21 minutes. I went to the snack room and got some chips for me and Dad.

Dad and I went for lunch in the cafeteria. We had about a half hour before our meeting with Dr. Fisher at 2pm. We got sandwiches in the deli line. Todd showed up right on time. The hematology oncology office was really crowded. I'm surprised we even got 3 seats in a row in the waiting area. We waited about 15 minutes before being called into a room.

Dr. Fisher said my scan looked great. I guess that means the cancer is responding well to the killing-chemicals we call chemo. But not well enough to call it quits. Dr. Fisher prescribed 2 more cycles of chemotherapy (4 treatments = 2 months) and suggested that I speak with his friend Dr. Mauch in radiology. He called him up and asked if he would see me right then. Of course. These Dana-Farber doctors are amazing at immediacy... I've never seen anything like it. So, Todd, my Dad, and I took a hike over to Brigham and Women's. It was about 3:30pm.

We didn't wait long in the waiting room... but in the examination room we waited forever. We couldn't really complain since he agreed to see us on such short notice... but we did a little bit anyway. The flourescent lighting was giving us all headaches and I don't think any of us wanted to deal with the important task of asking relevant questions about a subject we didn't really know anything about. We were already pooped.

Dad and Todd... this is how we wait

Enter a med student doing his residency. He was nice, asked me all kinds of personal questions, and examined me. He asked things like how many cigarettes have you smoked in your entire life and how often do you drink alchohol and what do you do for fun. All of these things I had an extremely hard time answering, probably because I was tired and I'm bad at math and I have chemobrain which makes me sound like an imbecil. Dad and Todd laughed which made me laugh and then I attempted to have a semi-intelligent conversation about literature that ended pretty quickly.

Enter Dr. Mauch. One of the first things he said was that I could never smoke a cigarette ever again. Which I agreed to on the spot. Later, being the insanely nostalgic person I can be I re-lived all the great moments I had smoking Lucky Strikes on the beach in Fuerteventura and the excitement I felt whenever I found an old school cigarette vending machine and the laughs I had ignoring the harsh warnings on the boxes in Scotland. Now, I am just frustrated because I am forced to change my habits and experience a new lifestyle... which is a choice I would have liked to make on my own... but that I probably never would have. So, I have to try and be grateful and creative with my clean slate. But it's not easy.

Anyway, Dr. Mauch talks to us slowly and thoroughly like he has all the time in the world, which was really nice since we waited so long. He reccomends 3 weeks of Monday through Friday radiation in Boston, where the precision experts practice. We tried to look at the alternatives since we know from the research that radiation can cause breast, lung, and thyroid cancer.
















The two options are:

A.) 4 more cycles of chemotherapy (8 treatments = 4 months)
B.) 2 more cycles of chemotherapy (4 treatments = 2 months) and 3 weeks of radiation (M-F)

There are new lymphoma and radiation studies happening as I write this, but all of the results won't be in for years to come. What we know now is that those patients who opted out of radiation have a higher recurrence rate. Dr. Mauch estimates that chemo alone probably produces a 75-80% cure rate with a relapse rate of about 20%. Radiation boosts the cure rate up to 90-92%. Dr. Mauch also estimates that the newer, more precise radiation fields probably produce about half as many secondary cancers as studies done in the past show.

After shaking hands with Dr. Mauch and his resident we hiked into the bowels of the parking garage and went for a bite to eat. We thought that by leaving the city later we would avoid the rush-hour traffic. So we had a few drinks, I had a salmon sandwich. We dropped Todd off at home.


Again, we hit traffic around I-95. I'm not sure what it was... but it was a slow day. We didn't get home with our news (whether you call it good or not is your own discretion) until 8:30pm.

Dad deciphers the parking voucher

Good nite!

Treatment No. 4

Auntie Nancy showed up early, around 8:45am, and I had breakfast and brushed my teeth. Then, she followed me to Fusco's Getty Station in Lawrence so that I could drop my car off for an inspection. Like myself, the Buick has seen better days.

I checked in and waited about 5 minutes before they called me into the room where they lay you back in a recliner and access your port-a-cath. It really hurt the first time since it was still sensitive from the surgery but this time it was no big deal. The big deal occurred when Patricia couldn't get a blood return, which means no blood would flow from the port-a-cath. That's the whole point of having one installed... practically.

Supposedly this happens quite a bit, a fiber and sheath can develop so that liquid cannot pass out. This is slightly disappointing since it means I have to get poked in the laboratory in order to get my blood work done.

This takes about 4 minutes and is practically painless... but still an annoyance since I don't really like Manny, the lab guy.

Then I go back into the room and wait with Auntie Nancy for what seems like forever. I guess they wanted to me to recline and relax so that they could try and get a blood return a second time.

Gloria, the nurse practitioner comes in and talks to me about all of the side effects I have been experiencing... which is luckily not that many. She takes her time reading my extensive file. I take the liberty of sparing her the details of my latest sad-phase.

Kay comes in, removes the access needle and tries again. No deal. So, it's off to the chemo lounge.

I don't know why I'm laughing, I wasn't amused. I think I must have been laughing at Nancy.

I'm pretty sick of the chemo lounge. At first it was ok because it was all new and mildly exciting. New faces, new places... just the kind of things I thrive on. But now, I hate the feeling of the cold medecine going into my veins and the numbness I feel in my mind.

Surprisingly, the time went by much faster than last time when I attempted to sleep. I tried not to look at the bag dripping, like trying not to watch water boil. It worked, I guess.

We got home and I went to bed. FYI: after a treatment is not the best time to call. I am so out of it that the sounds of your lovely voices brings on strong nausea. Sorry for all the missed calls but I slept for the rest of the day.

Auntie Kellie brought over a ton of good food, which I snacked on while watching It's Always Sunny in Philadelphia, a hilarious comedy about a gang of twenty-somethings that own a bar. I watched probably 6 episodes but was so drugged up, I could barely laugh. One of the funniest episodes is when one of the main characters lies to his friends about having cancer to get with a girl. My Crazy Daisies, Love Todd

Later, while sitting around eating a piece of bread and helping Billy assemble his new shocks for his truck, the doorbell rang. It was Todd with flowers and ice cream! It was an awesome surprise and made the whole blurry day better. We hung out and watched the new Gordon Ramsey show Kitchen Nightmares. It was an awesome ending to a terrible day.

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!!