My friend Benjamin Rubenstein has finished his memoir about his experiences with cancer. It's called: "TWICE How I Became A Cancer-Slaying Super Man Before I Turned 21." We have shared many stories over the years and I am extremely proud of him. I would always turn to his blog when I needed to laugh at cancer. He is the definition of the word "perseverance," both in terms of his attitude towards survival and his determination to get his story published!

So... you should buy a copy of his book here:



--Over six years ago I began writing a book about my experiences with cancer at sixteen years old, again at nineteen, and growing into adulthood in the aftermath. After 4,000-odd hours and countless drafts, I am pleased to report that my book has been published and is available to read. The title is TWICE: How I Became a Cancer-Slaying Super Man Before I Turned 21, and it can be purchased through my publisher’s website or directly from me at bmrubenstein@gmail.com. I want to thank you for your support, and am honored to be able to share this with you.

Hear what others are saying about TWICE:

Jonathan Kellerman, New York Times 33-time bestselling author
“Benjamin Rubenstein is a gifted story-teller and the story he tells in TWICE is riveting. This is a stunning page-turner of a memoir, devoid of the mawkishness that often mars the genre. TWICE is brutally honest, sometimes rib-achingly funny and all the more profound for the author’s brave exploration of himself.”

Library Journal by Jodith Janes, Cleveland Clinic Library
“It is estimated that only 150 diagnosis of Ewing's sarcoma are made annually and only two-thirds of these patients survive more than five years. Rubenstein was diagnosed with Ewings's at 16, but was determined not to be a "Sick Kid" for "I would never be able to discard the Sick Kid label." Writing with wit and humor, he chronicles his fight with this terrifying disease. Rubenstein's belief in the superhuman ability to fight his cancer gave him the courage to face chemotherapy and its devastating side effects, bone biopsies, a second cancer (leukemia), a stem-cell transplant, more chemotherapy, infections, hemorrhagic cystitis, weight loss, and osteoporosis. In spite of invasive diagnostic tests, treatment set-backs, and demanding physical therapy, he never fears he will lose his battle. The strong support of his family is documented with love and occasional frustration at what he sees as over-protectiveness. A University of Virginia economics degree is testament to his survival and entry into young adulthood.

Verdict: An inspiring and fascinating personal account of a long and often painful journey that would appeal to other patients and their families.”

This is an awesome new online forum for young people!

Check out the feature on my blog by clicking the picture!

I was recently contacted by the National Awareness Coordinator for the Mesothelioma Cancer Center. Asbestos.com asked me to post this important information regarding asbestos exposure.

Mesothelioma

Mesothelioma is a cancer that develops in the mesothelial cells that line many organs and body cavities. With this type of cancer, cells of the mesothelium become abnormal and divide uncontrollably and without order. They can attack and harm nearby tissues and organs. Most cases of mesothelioma begin in the thoracic cavity (pleura) or the abdominal cavity (peritoneum).

One of the only known causes of mesothelioma is exposure to a mineral known as asbestos. Asbestos was in widespread use throughout most of the 20^th century in a number of military and industrial applications. The primary uses included insulation, brake lining, flooring and piping. Asbestos was valued so highly because of its durable and fire-resistant qualities.

A large majority of houses built before 1980 also contain asbestos insulation. The substance is harmless if left undisturbed, but once it is damaged or deteriorated it releases microscopic asbestos fibers into the air which can then be easily inhaled or ingested. Most mesothelioma cases caused by asbestos can be traced back to military or occupational exposure. The most common occupations affected by asbestos include firefighters, electricians and auto mechanics. Secondhand exposure is also a risk for families of those who worked with asbestos. The fibers can attach themselves to clothing and be brought home to the worker’s family.

Unfortunately, effective treatment of mesothelioma is not very common. The reason for this is that malignant mesothelioma has an unusually long latency period. It normally takes anywhere from 25 to 50 years for noticeable symptoms to show up. Because of this, mesothelioma is not typically diagnosed until its later stages when treatment options become more limited.

As stated before, mesothelioma is most treatable when caught early so if you are aware that you have been exposed to asbestos at any point in your life, it is important that you let your doctor know so that you can be monitored for any asbestos related illnesses.

Dear Family and Friends,

I hope that this update finds you healthy and happy.

Shortly after my move to New Mexico, I was awarded a grant from The SAMFund, a scholarship fund for young cancer survivors. This grant paid my rent for six months, while I got on my feet in a new city. To date, The SAMFund has awarded a total of $400,000 to close to 200 individuals across the country.

Here, you can find the link to the list of 2008 recipients: The SAMFund

I know that during these financial times, we are all thinking about money... but, I want to thank all of you that contributed to my fundraising efforts for breast cancer last year and/or my roommate Emily's efforts in support of the Leukemia and Lymphoma Society. While we often wonder where our money is going when we make a donation to cancer "research," I can attest to you that it is your donations that make scholarships and grants for cancer survivors possible. As a person who knows a lot about debt (ie: student loans), I have come to learn that medical debt is very real for the majority of us.

Thanks again for all of your contributions.

Hugs,
patty

Personal update: I have successfully completed my first year of my dual-master's degree track at the University of New Mexico in Latin American Studies and Community & Regional Planning (a 3-year plan). I am looking forward to my last follow up scan in July 2009. Afterwards, I will continue to have CT scans once every three years. After two trips home to be with family and friends, I plan to return to Buenos Aires for a conference relating to my thesis research on self-governance and alternative economies.

Holiday Time is Scan Time

On January 5th at 11:15 AM I had my second follow up scan.  Me, Todd, and Mom made the trip into Boston to re-visit our favorite cancer center, Dana-Farber.  It was a grey day and I felt extremely ill from a late night of partying until 5 AM the night before.  

We arrived and momentarily got lost on the PET scan floor.  We needed to be in CT.  Finally in the right place, I sit down with my two bottles of radioactive Crystal Light and Todd and I told Mom some funny stories about our trip to Canada.  Drinking the radioactive juice wasn't as difficult as times past, considering how dehydrated I was.  The major pitfall, aside from the metallic taste, is that they keep it too cold.

I went in for my scan and I think it look less than 5 minutes.  I'm so smart now.  I never wear a bra and therefore, never have to undress.  Just lay down, point to the right vein, wince, and close your eyes while your inside the spinning machine.  The technician and I had some laughs and talked a little bit about New Mexico.

Leaving the scan room, of course, Todd and Mom are nowhere to be found.  Those sneaks.  They are always moseying off to have lunch or get coffee without me!  Because the sign in the waiting room specifically notes: "Please NO food or drink.  Patients are fasting for exams." Fortunately for them, I found them rather quickly in the cafeteria.  We decided to stay there for lunch since we had an appointment with Dr. Fisher at 2:30 PM and the two escapees had snagged a sweet booth.  We had pizza for lunch. 

Dr. Fisher's waiting room is pretty much the worst part of the entire experience.  You never know when they will call you.  And then they call you and they just want to put your name on the list for blood work.  Then you sit down and wait some more.  Then they call you again.  This time it's just to take your vital signs.  Then they finally call you for blood work and you're exhausted and pissed off that you forgot to tell the CT technician to leave the IV in so that they wouldn't have to stick you again.  I only had one vein that day, considering the drinking I had done the night before, so I told her to stick it.  And it was good.  Phew.

Finally!  ...we're brought to a room to wait for the Doc himself.  He doesn't take too long and Todd and I hype him on Mont Tremblant, Quebec.  It's fun.  Then he tells me the scan is clear and that my neck looks like the neck of newborn baby.  And we leave.  And that's that.

I have another scan scheduled for June.  After that I'll be able to go once a year instead of every six months.  That will be nice in a way... though... scarier too.  A year is a whole lot longer to wait while something deadly could be growing inside you.

Reflections from New Mexico:

I was just speaking to a friend who mentioned the idea of changing this blog's name to "Patty Had Cancer."   At first, this seemed like a good and natural idea, however, upon second thought I realized that I still do have cancer.  

I have the memories that compile the experience of knowing that your body is acting against you.  I have memories of friends tenderly acting like nothing has changed.  I remember my family always by my side.  I have feelings of triumph and success.  I still have cancer, not anymore in a physical sense and not only in memories, but now as a part of my character.  

And I'm not ashamed of it.  I'll just check it off the list of things to do in this life.

Dear Donors, Supporters, & Cheerleaders,

Thanks to everyone who helped Katie and I reach our goal of raising $3,600 and walking 39.1 miles in 2 days! Everyone helped in their own way. Some made donations, others supported us at our fundraising events, many offered their time and help, and others cheered us on at the end of the first day (mile 26!). It is because of all of you that this year’s Boston Avon Walk for Breast Cancer was a record breaking success. It was the largest Boston event to date with over 2,900 walkers raising $6.9 million dollars! The Avon Foundation made 7 initial grants at the closing ceremonies including:

· Massachusetts General Hospital, $800,000
· Dana-Farber Cancer Institute, $500,000
· Boston Medical Center, $300,000
· Various community programs that support early detection

These important grants will support research into the potential role of genetic and environment interactions in breast cancer, a new mobile mammography vehicle with state-of-the-art equipment, as well as basic technology upgrades and community awareness and access programs. In addition, more grants will be awarded throughout the year!

Avon Walk for Breast Cancer 2008

I kicked off the event by waking up at 4:45AM on Saturday, May 17th (probably the earliest I have ever woken up in my entire life!). I dressed myself in walking gear—a rainproof skirt and fresh New Balance sneakers—grabbed my coffee and met Katie at the front door. We stopped in Somerville to pick up Todd, the honorary chauffeur, and took off for UMASS Boston. It seemed like as soon as we finally unloaded our gear at 6:30AM, it started to rain.

We ate a provided breakfast of bagels, bananas, and water provided by one of the event sponsors, FIJI (yum). The Opening Ceremony included inspiration speeches by cancer survivors and guided stretches. We began our journey around the circumference of Boston by 7:00AM. From UMASS we walked along Boston Harbor. Vans full of volunteers and crew members, decorated in pink bras, honked and cheered. Bikers from a Harley Club on their motorcycles stopped traffic for us as we crossed every single intersection. It felt amazing to be there with so many other people that the rain didn’t even matter. Then, some time before mile 5 a woman behind us spoke:

“Do you know that your ankle is bleeding?”

Katie’s shoes were rubbing her the wrong way, so between rest stops we paused to bandage her foot with Neosporin and Duct Tape. The rain was letting up but we wondered if we were going to make it. At least blisters don’t need chemotherapy, we joked.

We passed The New England Aquarium, Quincy Market, and finally North Station and the Museum of Science. I couldn’t believe I had seen so much of the city before noon! The clouds cleared as walked along the Charles River and passed over Storrow Drive. We followed the river all the way to MIT and finally ate lunch at the Charles River Reservation at mile 9. We laid out some cardboard in the wet grass and devoured our bag lunches of turkey sandwiches, baby carrots, apples, and chips. Our legs were cramping up and we couldn’t afford to rest long. We changed our wet socks, stretched and got ready to hit the road. It must have been around 11:30 AM.

Katie stretch-resting

The sun came out in full force after lunch as we marched through Riverway Park into Brookline. We passed the halfway point. I took a huge sigh of relief that I didn’t have any blisters yet, and we applied sunscreen. I spoke to my Mom over the phone. I remember having a lot of energy and excitement.

The park was so beautiful and it felt as though the sun had come out just for us. We made it into Jamaica Way and the park setting with all the green grass and trees felt wonderful after all the city walking we had done earlier that day.

We entered Dedham as the miles markers kept climbing higher and higher. There were no more sights to see or rivers to follow. Now it was the final trek to mile 26. There was no more time to stop and smell the roses or to take scenic or candid shots. Now we were truckin’ and it was hot.

Half way!

We marched up the steep hill at the end at a steady pace. And finally reached mile 25! It felt amazing knowing that we were at the end—the final mile! As we proudly marched on, I got a phone call from my Dad and I told him we would be there in about 20 minutes. Mysteriously, mile 26 didn’t show up for quite some time and my body knew what a mile felt like at this point. Those last 385 yards (the .2 of a mile) were a huge morale killer. An hour later, around 4:30 PM, we arrived at Prowse Farm in Canton, MA to the cheers of my Mom, Dad, and Victoria.

"NO PARKING. Reason: Cancer Walk"

Wellness Village, Prowse Farm, Canton, MA

Cheerleaders

The Wellness Center was buzzing with booths from the event sponsors Reebok, Genentech BioOncology, Novartis Oncology and Prevention Magazine, and FIJI Water. There were yoga classes, the tent city, hot showers, entertainment, and of course DINNER!! Dad helped us find our backpacks and set up our tent which we probably never could have done ourselves. We had dinner and then we hit the medic tent. I scored some Ibuprofen 800 and Katie had her blistered feet taped up. My family left, taking our wet clothes and extra shoes, and we got ready to take showers in the amazing port-a-showers (which were actually awesome, although I guess any form of shower would have been awesome at that point). We were exhausted. Although we wanted to get into a yoga class we opted to have a second dinner and hit the hay around 8:30 PM.

The view from our tent in Tent City (in the background you can see the shower trucks)

People began bustling around 5:30 AM and I didn’t want to move from my soft, warm sleeping bag. Finally, Katie started packing and I felt obligated to do the same. After, we grabbed some breakfast of scrambled eggs, home fries, and fruit. We begrudgingly packed up our tent with some much needed help, loaded our bags into a truck, and made our way to the starting point. 13.1 miles to go.

The route meandered variously through neighborhoods with large houses and huge trees, and through the downtown areas of suburban towns. There were signs in shop windows congratualting us. It felt amazing… until I started to limp. “Are you OK? I have some Band Aids if you need them.” Strangers kept trying to help me but I wasn’t limping because of a blister, I was limping because I had developed tendonitis in my right ankle and it felt like the bones in my foot were shattered. I thanked them all for their generosity and pimp-limped on. That’s what we were calling it now as Katie and I entered the final mile. I pathetically whined outloud feeling as though I might burst into tears. There were no more cheerleaders; all we had was each other and fellow walkers encouraged me by saying things like, “That limp really becomes you.” I had to make it—we had come so far!

As soon as I saw the finish line I wanted to collapse. I just kept thinking about all the good that will come from ALL of the money that we raised! I hobbled across the finish line back at UMASS Boston in amazement at what we accomplished.

To greet us were hundreds of family members and friends cheering and hugging and taking our pictures. It was incredible. I couldn’t believe how far we had come. I couldn’t imagine that just yesterday we had stood here at the Opening Ceremonies in the pouring rain. We had under taken a pilgrimage and we had reached the Promised Land! And yet, I couldn’t sit down. I couldn’t believe it was over. I didn’t know what to do with myself. I sat in the shade and had a snack, watching more walkers pass through the pink arch and complete their journey.
Despite some blisters, sun poisoning, a trip to the Emergency Room Sunday night, and calling in to work “sick” on Monday, both Katie and I survived! We want to thank everyone for doing what they could to help make this miracle a reality. Remember that every 3 minutes someone is diagnosed with breast cancer. Hopefully the work that we all did to make the Boston Avon Walk a success will soon make it only every 30 minutes, or 3 days… or 3 years… or NOT EVER AGAIN! Thank you for everything and take care of yourselves.

Hugs,

Patty

It's been a month!!

Since I last posted... woah, that's terrible.

As you know, I've been extremely busy fundraising. And the fruits of my labor have paid off since I made my goal of $1800 in almost 6 weeks!

I've only just started my training for the 39.1 mile walk in May. But so far so good. Yesterday I started with 40 minutes of yoga (which I LOVE) and then took off on a 5 mile journey around town. It took me about an hour to complete and was very senic. Today I took a quick 2.5 mile jaunt, but this time tried to speed up the pace a little bit. I am really enjoying seeing parts of town that I haven't seen since I was foot-traveling teenager.

Since the weather is going to be so wet this weekend, I think that tomorrow I will stick to some yoga and try to get a 7 mile walk in on Sunday... if I'm not too tired/hungover from our fundraising keg party Saturday night.

If and when the weather gets nice again, I would like to make some trips to Weir Hill and also Salisbury Beach. If anyone is interested, give me a call!

If you love 70's Disco and/or Boobs
Click the vinyl to check out our team page!

Violet is for Hodgkin's Lymphoma... But... Pink is for...
Avon Walk for Breast Cancer!!

As many of you may already know, or will soon know, I have made the decision to participate in the Avon Walk for Breast Cancer. It should be called the Avon Walk Against Breast Cancer... because I'm definately not walking to get it!

As a participant, I have vowed to raise $1,800 and walk 39.1 miles in 2 days during 2 days in May!

I decided to walk for 2 main reasons. Breast Cancer will affect 1 in 8 women in her lifetime. If I name 8 women close to me, there's no way I can bear to see any of them going through this traumatic illness. My second reason is that I want to give back to the very institutions that cared for me during my illness. Between 2003 and 2006 The Avon Foundation donated over $150 million to research, hospitals, and social services. It's good to know that the money raised in Boston, will stay in Boston.

If you would like to make a donation to, or join me in, my cause or just see my "New Blog for a New Era" just click on the pretty pink pin up at the bottom of this post!!

Mwah!

My Final Surgery??

About 2 weeks ago, Todd and I returned home from an amazing trip to Sunday River. The next day, he called out of work and took me to Lawrence General to have my port-a-cath removed.

I was excited and a tiny bit nervous. But Todd and I laughed a lot and joked with the nurses so it was fun. :)

While we were fooling around, Dr. Gemis came over and took our picture. He told me about how he was going to remove all of the scar tissue left from the insertion and sew me back together with a thinner line. That surprised me... but hey, whatever looks better.
CUTE!!

This is a really good action shot of me getting my IV. Generally speaking, I HATE this part... but I specifically asked to have it put in my arm (because I know it hurts more in the hand). This way, because my veins have been poked so many times, I didn't even feel a thing. Which is kind of sad in a way... but good in another way.

When I came out of surgery all they gave me was some delicious apple juice. I was starving. I hadn't eaten since 10:30 PM the night before. The nurse said she couldn't let me leave until my blood pressure went up. And yet, they weren't giving me anything to eat. So they gave me a second bag of fluids in my IV instead. And I wasn't happy.
Finally, after begging and saying how hungry I was, the nurse let us go.
And I went home and took a vicadin and watched the Futurama movie!
The End.

**Since then I have been watching my scar. It looks kind of weird. So I am going to see Dr. Gemis tomorrow to have him look at it... and maybe fix it. Because he definately didn't say anything about a weird nub.

I'm doing pretty good.

I'm really busy and relatively healthy. Between 2 jobs, doctor's appointments and mini vacations... I barely know if I'm coming or going.

I took a 10 hour/week position at Hostelling International (www.usahostels.org) as the Media and Development Assistant. It means I spend a lot of time calling rish people and asking for money... and doing research I don't think that they are ever going to use. Oh well. It's nice to have an office job for once. Although- it definately doesn't beat Northpoint!! Holla!

I've been snowboarding quite a lot (more than I thought I would be) and it feels awesome! I'm trying to catch more air and be more daring... I mean, I did just beat cancer- what could be scarier? A little snow, a little speed, and my feet off the ground doesn't even come close. So far, I've been up to Waterville Valley and Loon... but my favorite has been Mount Snow, VT. Todd and I also have trips planned to Sunday River, Jay Peak, and Stratton.

(this is me and Marielle @ Bradford)

And of course-- FLORIDA!! We leave for Florida in less than 2 weeks. So... we're trying to pack, getting our bathing suits and sunscreen in order (which you can image is slightly precarious compared to snow gear for us!).

I also joined the gym at work. I went 3 days last and it feels great. Instead of trying to bust my butt on some awkward cardio machine I've taken to the pool (and sometimes the hot tub!). The pool is small- but just big enough for me to make it across without drowning. I've never been a good swimmer. So, for about 20 minutes of back and forth I feel the burn... plus it's heated... so, besides snowboarding, I've definately found the perfect workout. So long as it doesn't turn my new hairdo green.

Speaking of hairdo- it's cute. It's still super short but it's growing fast. It's showing some signs of curl which is making me nervous... because I don't feel like having the new afro for the cancer-cured white chick. But, what can you do, really? I guess I could always cut it.

I have my pre-op appointment on Thursday for my surgery next Monday (after we get back from Sunday River). I've got to get this port-a-cath remoooved!! Finally will I feel a little more like this is all over! Which has also been a little difficult for me, not knowing what to do next.

And yesterday I had the most awful feeling like it might come back. Like "cancer" was lurking over my shoulder waiting to get me... just when I was starting to feel like myself again.

An Entry in Images


This is where I scanned my ID card every day upon arrival. As you may be able to see, my machine, the second one down the list, is 30 minutes behind... but that's OK! It also lists which doctor's are on duty to see patients... 'cause you have to visit with The Man at least once a week.

In the meantime, I'll just hang out with my cool nurse, Lynn. After a quick visit Lynn advises me that I have my port flushed. Whaaaat? It hasn't been accessed in over a month and in the off event they need to use it again... she has to flush it with saline. Fine, whatever, I have like an hour wait anyway. It takes Lynn 3 stabs before she gets it, but I didn't mind because she used a numbing solution first which was like first-class treatment as far as I'm concerned. She's really good... she even got a blood-return!

Then... it's Johnny time! Enter the changing closet and choose your weapon. Not much of a choice really... and would you know, I get the one with only one string every time!! If you're ever faced with this situation I suggest choosing the Johnny that looks most new. :) You'll look more shabby sheek... trust me.

Before I know it I'm face to face with Machine 15!!

Say hello...
Don't be scared...



So... this is where it all takes place.

And this adorable Francis and Amy, the technicians that run Machine 15 every single day. I think Francis had one day off during my whole treatment. They're good folks. :) I made them cookies.


And so ends An Entry in Images.

January 7th, 2008

FINALLY... an update.

Today is Monday-- and Wednesday is my last radiation treatment.

I've sort of been tackling this portion of my treatment with a blind eye-- it's easier since it's less painful-- going to the hospital everyday like it's a simple errand. And it's so routine that it's easy to forget why I'm even there.

I drive into the parking garage, spiral into the bowels of the cement edifice, walk 5 seconds over to the Brigham & Women's building, press L2 in the elevator, turn right and walk to the end of the hall, scan my ID card, change into a johnny, wait in the waiting room with other johnny-clad patients. I usually read a magazine... I'm all caught up on Architect's Digest, Audubon, Sport Diver, and Better Homes.

Sometimes I wait for hours and sometimes not even a minute.

When they call my name I enter the treatment room through a lead door and am greeted by my beautiful radiation technicians. Literally, they're all gorgeous. At first, my superficial assessment weirded me out, until I realized that it was their amazing personalities and extreme kindness that made laying under their machine that much less annoying, not their pretty looks.


So, I greet the technicians and lay down on the narrow, cold table. They undo my johnny, line up my tattoos with the lasers in the machine, pull my hips .5cm to the left, and then one of them says "Here we go, this looks perfect." They turn on the lights and leave me there with the sounds of Jimmy Buffet or smooth jazz and the beeping starts and I feel my esophagus melting. I try to close my eyes but I can't so I stare into the big, black eye of the machine.

The technicians are sort of like a little clan of Oopmpa Loompas working for Wonka or a band of Christmas elves working with their little tools, doing all the ground work for the big guy... Dr. Mauch.

When the beeping stops they come back in, raise the table up to the ceiling, and rotate the machine underneath me to get my cancer from behind. And they leave and I'm left alone with the machine again.


The beeping stops again and I tie up my johnny as they lower the table and we chit chat and say "See you tomorrow" and "Have a nice night." I pay the parking attendant anywhere from $2 to $8 bucks. Go home to Todd and we make dinner and watch movies and go to bed-- to do the whole thing over again.

Wednesday is my last radiation treatment... but that doesn't mean I'm home free. I've already got the go-ahead from Dr. Fisher to have my port-a-cath removed which means another surgery. I also have a follow-up appointment with Fisher and Mauch on February 21st, the day after I return from my birthday-vacation-in-Florida.

After that though, I guess I'll be done for the next couple of months... until...

MY NEXT SCAN!!

The Joys of Radiation

Over a week ago, I went to my "mapping appointment" at Brigham & Women's. I went alone. Considering all the research and weighing of options I had to do, mostly on my own... and the final decision, which I made on my own... I figured... why the hell not. Plus, it was easier not having to worry about anyone else.

In an examination room, one of Dr. Mauch's (you'll see he's a very popular guy and gets many other people to do most of his work for him... which makes him slightly mysterious) residents goes over all of the many dangerous potential short and long term side effects of exposing your fragile body to radiation. While he's explaining all of this, most of which I already know, I think about backing out of the whole ordeal. Saying, "Thanks, but no thanks! Why would I want to do that to myself? You've got to be kidding." And then he says something I probably will never forget: We are not worried about the potential for secondary cancers. We are concerned with curing the cancer you already have. Which I am already cured of, thank you very much, with 2 clean scans under my belt. Now, he probably didn't mean it in the way that I took it... but I still didn't think it was a very good thing to say. Of course, he's a radiologist... so that's all he should care about... radiating my cancer... it's not as though he is my primary care physician who's job it is to care about me past, present, and future?

And there's another reason added to list of why I don't like doctors very much.

At this appointment I get to do one of my favorite things... wear a johnny. CRINGE! Worst invention ever.

In my stylish hospital wear, I'm sent to another waiting room, the size of a handicapped bathroom. Literally. I'm sitting there alone... in my blue johnny with a black and white knit cap with a skull and crossbones... classy... when 2 other women walk and in and sit down. I think they must be Italian because they talk a lot. Or maybe they are just nervous... but they are gossiping at light speed. Which is good for me because it fills the air with something other than stale smells and my instinct screaming at me to run from these self-absorbed, maniacal, radiation-wielding geniuses!

One of the ladies offers me a clementine... and sadly I decline.

When they call me, I take my position laying on a hard table. They take a bunch of x-rays, line me up, move my hips, my shoulders, align my neck. There's beeping and hands pulling me this way and that. It was exciting. Just like getting ready to have my insides removed and replaced with robot parts- hey, why not?

I might as well have been on an alien spaceship getting ready for a probe because then they tattooed me. I've always wanted to get a tattoo... and I'm pretty disappointed that I waited this long to get one. Now, my first tattoo is a geometric constellation of blue pin-prick sized dots on my chest. Unattractive and yet functional! They'll use these dots to line my body up with lasers inside the radiation machine... in other words, it's so that they don't miss.

After the tattoos I think they probably take some more pictures and align them with images from my first scan when the mass in my chest was bigger than 9cms. Then I'm sent to a changing room to remove my johnny. Finally! I shed the faded, paper-thin robe and slip into something more... comfortable.

Then I'm given a tour of the facility by one of Dr. Mach's nurse practitioners and a student. I'm beginning to wonder if I'll ever see the man himself. The tour is short-lived. This is where you change into a johnny everyday (great), this is where you wait in your johnny to be called into the radiation room (great), and this is where you scan your id card (johnny optional) and this is the nurses station in case you have any questions during your visit. Do you have any questions?

We all go into yet another examination room where the nurse practitioner in her pretty purple glasses that almost look like goggles (or a splatter shield) tells me all about what to expect on a daily basis. Siiiigh. I keep forgetting what I've gotten myself into. Good thing there's always some nurse or resident or secretary to remind me! The nurse gives me a packet full of information and phone numbers in case of this... or that... or the other thing. And then she gives me a bunch of lotions and oral rinses... which I am totally stoked about taking home with me. NO. This is for if you develop a burn on your skin from the radiation... swallow this 4 times a day if you start to get a sore throat because the radiation is damaging your esophagus... and call us if you're experiencing anything abnormal that we haven't discussed today.

This is all very frustrating since this treatment is supposed to helping... and so far, that's not the gist I'm getting today.


The she leaves and I wait at least a half hour before Dr. Mauch himself graces me with his presence. He doesn't have much to say except "Don't worry" and "Everything looks in order" and "We'll proceed next week" and "You'll have 17 treatments" and "See you next week."

Yea. I guess. See you next week.

Scan No. 3

The day of waiting... and waiting...

This day, Todd, mom, and myself drove to Brigham and Women's Hospital for my third scan. What we didn't know then was that Dana-Farber is much more efficient at scanning than Brigham and Women's. Well, we know now.

I was taken into the back around 1220pm... my appointment was at 11am. Then, instead of getting a sweet room with a TV in it to wait to become radioactive... they put me in a room/hallway in a stiff recliner, inject me, and tell me they'll be back in an hour. Torture. I stared at the wall in front of me and tried to overhear the patient in the next room. How old was he? What type of cancer did he have? I never found out... but he had a good sense of humor... which basically comes with the territory so it wasn't anything new.


I'm going to be late for my 230pm appointment with Dr. Fisher. That means more waiting. Great. The scan goes by pretty quickly... it's much less tortuous now that I keep my arms down to prevent them from falling asleep. When I get out of the scan I find mom and Todd in the waiting room with guilty looks on their faces. In case you forget, before a scan I cannot eat for 6 hours. Well, my little escorts that day decided they couldn't wait any more and went out to lunch while I lay inside a cold metal scanning machine.

So I'm starving. We walk over to Dana-Farber to meet with Dr. Fisher. We wait some more here. I don't know what time I was finally called. When the nurse takes my vitals, my blood pressure was so low that she had to feed me a plan, dry, turkey sandwich on white bread.

When we see Dr. Fisher he doesn't have much to say. He can't view my scan because it's not on the medical server yet but he assumes it's clean just like the last one. Despite my reservations about radiation, Dr. Fisher insists that if I opt out of it, that I will need 4 more cycles of chemotherapy (that's 8 treatments!). Great. So basically, I'm shittouttah... options.

We drop Todd off at his pad in Somerville and I cry because I'm so pissed off... about everything.

Treatment No. 8

My Doctors are Fighting

I wake up in Boston around 745am and get my butt into gear for my last treatment. I find a parking ticket on the Lesabre (apparently you aren't supposed to park within 20ft of an intersection). I'm off to Lawrence General!

(This is a picture of me and my Chemo-Graduation Bear!)

I get home about 845am and have some toast. I also take my antibiotics that I was prescribed for biting my own cheek over a week ago. Duh. Dad and I sort of putt around the house in no big hurry... but finally, it's time to go.

We get to the hospital and end up waiting an hour and a half to talk to Dr. Sanz. He was back in Spain (with his wife and family) for the last 2 weeks so all of his patients are anxious to see him. I am anxious to get in and out of the chemo-lounge as quickly as possible.

Dr. Sanz expresses that, if I have one more clean scan, that he would rather not see me have radiation. I told him that Dr. Fisher from Dana-Farber wants me to have radiation. Dr. Sanz says that he will call Dr. Fisher to get his opinion. I also tell him that I met with the radiologist Dr. Mauch and Dr. Sanz says that they call that the "Banana/Chimp" affect. So, my doctor's are fighting. And I don't really care... I'd just rather be done with the whole entire cancer thing.

Finally, I get to the chemo-lounge where Ed, a chemo friend of mine, informs me that today is his last day as well. Hooray! I mean, it's weird. We see each other every other week, we chat, we take drugs, we see each other getting stabbed by the nurses, we see each other have adverse reactions to drugs... we see the good, the bad, and the ugly... and now we may never see each other ever again.

When I get home from my treatment, I sleep... pretty much the rest of the day. I had to cancel plans with Emily because I was just so tired and groggy. When I woke up there was the wine poster I had tried to get from Mcaloons Liquors that Auntie Paula had left as a surprise for me! Cool! I have a piece of pizza with gingerale as a snack. And then Auntie Kellie comes over with dinner! Delicious! I am sitting on the couch alone watching Kid Nation when the doorbell rings.

Surprise! Todd with flowers! He walked to my house all the way from the Lawrence train station! I was so excited to see him! I had wanted to make my last treatment special... but I didn't really know what to do... since I never have enough energy to actually do anything. It was perfect. We watched the rest of Kid Nation and Kitchen Nightmares, had ice cream, and then Todd tucked me in. The perfect ending.

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!!!!!!!!!!!!!!