HALLOWEEN!! and treatment No. 7



Monday was the beginning of my busy busy week. I went for my MUGA Scan. It was pretty sketchy. Lawrence General Hospital is probably one of the freakiest places I have ever been. It has nothing to do with the people who work there or who are treated there... it has everything to do with the ancient architecture, the outdated decorations, the scarey elevators, and the overall lack of space! You especially notice this when you enter Nuclear Medecine, a narrow hallway hidden behind the Laboratory. Nuclear Medecine is where they do all types of scans. At the end of the hall there are three rooms full of machines AND IN the hallway are patients in wheelchairs and hospital beds waiting for their turn at a scan. And there I am, sitting in one of those weird arm chairs they use for taking blood waiting for my nuclear injection. It's downright freaky!

It wasn't the best experience. Although the technician did get a vein on the first try... no blood would come out. I had been so dehydrated over the weekend... that it was literally like taking blood from a stone. It took at least 5 minutes for her to get enough blood into the vile. It was disgusting.



Monday night was much better. Todd spun at the Enormous Room in Cambridge. His annual amazing Halloween Mashacre featured hits like The Monster Mash, Enter Sandman, and of course Thriller. Despite having to carry a ton of equipment in my nurse costume and heels... it was super fun!!






Tuesday I took the subway into downtown Boston for my acupuncture appointment, which was interesting considering the massive amounts of people going to the Red Sox parade!! The acupuncturist, Mihn, was extremely nice and thorough in her questions about my many ailments (namely: my right shoulder, my inability to sleep properly at night, cold hands, and my bad mood).


I laid down on the table. Mihn put two heat lamps on. She stuck three needles in my stomach and wiggled them around. Ow, a little. Then she put one needle in each of my elbows, wrists, knees, feet, ears, and one between my eyes. She left me with some classical music in the room for about 15 minutes. When she came back, she took out the needles and I turned onto my back. She found where my shoulder was hurting and stuck 7-10 needles around the area. She also stuck more needles down my spine. I stayed there for another 15 minutes with the heat lamps on. It felt sooo relaxing.


I can tell you right now, that my shoulder doesn't hurt anymore. Although she did reccomend that I have an upper body massage to rejuvenate my shoulder muscles (which I will seriously consider). And I definately feel an improvement in my circulation. She said that I should continue with the acupuncture every other week in combination with light massage. Cool!

On Wednesday, which also happened to be Halloween, I had my second to last treatment. It was slightly depressing to have to go to the hospital on such a festive day. I certainly didn't feel like a kid anymore. I debated wearing parts of my nurse costume to be funny but in the end decided that I didn't want to offend anyone or feel weird. Boring.


Auntie Kellie came over. We had to stop at CVS to pick up a camera. At the hospital, we checked in and the nurses accessed my port-a-cath immediately. No blood return. Manny did a finger prick and passed 5 minutes squeezing blood from my right middle finger. Gross. After that I spent 15 minutes waiting for Gloria the nurse practitioner in an examination room while poor Auntie Kellie sat in the chemo-lounge! Gloria didn't have much to say... blood counts good... minimal side effects... I'm just tired... do I need any prescriptions?... yadda yadda. "Oh, you are due for a Lupron shot." "I was thinking, since I only have one more treatment left, maybe we could skip it?" "No, I think you can get it today after your treatment."


In case you don't know, Lupron is the milky white shot they give me in my backside, that supposedly puts my ovaries to sleep. It kills. I guess it was a TRICK for me this Halloween.


The treatment goes by pretty quickly, despite how extremely inpatient I am... it can't be over quicker. We watched Rachael Ray, who was dressed like a flight attendant for Halloween. Cute! I tell Auntie Kellie about how I can taste the Benadryl when they inject it into my port-a-cath and how gross it is. Yummy.


Finally, it's over and Kay takes me into an examination room for my injection. Ugh. I bend over and since it hurt so much last time we decide to try the other cheek. OW!!! I scream outloud and I'm bleeding. Booooo.


I sleep the rest of the afternoon. Victoria goes trick-or-treating. Kitchen Nightmares is a repeat. What a day.


One more to go!!!!!!!!!!!!!!

Next week... looks like a lot!!

On Monday, I have another Muga Scan-- where they take my blood, mix it with dye, inject it back into me, and take pictures of my heart. These pictures will determine how much damage the Adriamycin (the drug that makes you lose your hair) has done to my heart. Probably not that much, but we must be sure. How exciting... and on Wednesday I have treatment.

But on Tuesday, I am going to try some alternative medecine! Since I can't seem to get enough of those wonderful NEEDLES... I am going to get some acupuncture!! Sweeeet! I have heard great things about acupuncture for cancer patients.

Acupuncture can re-energize the immune system!! It can also reduce anxiety and stress. Sounds perfect! The reason that the application of needles to certain parts of the body called acupoints (there are 2,000 on the body!) can help heal ailments is because the needles stimulate nerve cells, the pituitary gland, and parts of the brain. In response, the body releases proteins, hormones and brain chemicals that may otherwise be suppressed. This can postively affect blood pressure, body temperature, and the immune system.
Acupuncture is based on the belief that qi (vital energy) flows through the body along a network of paths, called meridians. Qi is said to affect a person’s spiritual, emotional, mental, and physical condition. The FDA approved acupuncture needles for use by licensed practitioners in 1996.

Even better-- my insurance covers it!

I won't lie. I am a little nervous. But I will try anything once!! Especially if it's good for me!

For more information visit: The National Cancer Institute Website

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!