Archive for the ‘Cancer’ Category

Scenes From A Chinese Restaurant

Sunday, January 29th, 2006

Last night I was at a Chinese buffet with Steve. I was adding some ginger and wasabi to the tekki maki and California rolls on my dish, when a woman came up to my side.”You’re brave,” she said, pointing to the green dish of wasabi. “My mother accidentally put a whole glob of that in her mouth a few weeks ago because she thought it was guacamole.”

I laughed, and told her that the wasabi’s bite didn’t bother me very much.

“May I hug you?” she asked.

I thought this was a very strange request. Hugging someone because she can stand the heat of wasabi? Heck, whatever floats people’s boat. I let her hug me.

“I beat cancer three years ago,” she whispered in my ear as she hugged me. “Just keep on smiling, like you are now.”

She patted my arm, smiled, and walked away.


It’s a bit hard for me to think of that scene last night without getting tears in my eyes. I never, ever let the cancer define me. With the exception of my prominent chest scar and feathery new hair, there’s nothing to remind me that I did have cancer. That’s why I thought she was hugging me because of my fondness for wasabi. I sometimes tend to forget.

A Post Of Thanksgiving

Tuesday, November 15th, 2005

I know I’ve been bad (OK, horrible) at updating this journal, but this is going to my final post about my cancer.

As of Sunday, I officially finished my sixth and last round of chemotherapy for Non-Hodgkin’s Lymphoma. I am no longer a cancer patient – I am now a survivor. And I wanted to say thank you all for being there for me during the biggest struggle of my life.

Although I’ve been in remission since September, I still had a long road ahead of me… tiring chemotherapy treatments, blood transfusions, weeks in the hospital, sleepless nights, and a lot of pain.

Most may say that cancer is a burden, and something that should have never happened to me. I thought so too in the beginning, but as I rested in my hospital bed the last night of treatment, I had a revelation.

My cancer was a blessing.

When I realized that, I was the happiest I’ve been in a long, long time. I was in a spiritual rut for a long time, and earlier this year I cried and prayed after listen to Michael W. Smith’s song Place in This World.

I was going through a rough time at school, I was confused at the direction my life was heading, and I was questioning my relationship with others.

Perhaps this was God’s answer to my prayer. A strange one at that, but it was still an answer. I’ve found my place in this world. I’ve found out who my true friends are. I’ve discovered the kindness of strangers. I’ve become a better, stronger person. I’ve begun living again.

Thank you to everyone who has been with me through this journey and everything you’ve done for me. Whether it was a simple phone call to ask me how I was feeling, a card, a hug, a bottle of Dr. Pepper, or a shoulder to cry on, it meant the world to me. You’ve all made a huge difference in my life and the best that I can hope for is that I will be there for you as much as you’ve been there for me when you need a friend.

What’s next for me? Well, I’m going to rest up and get my immune system back in order. I can’t wait to get back to my old activities again. I want to visit people, go to the city, and live life to the fullest. God’s given me a new lease on life and I’m going to take it by the reins.

Oh, and I still don’t know whether I’m going to grow my hair back. I’m kind of digging the bald look, even though it’s getting a bit chilly. It will be interesting to see what color and texture it will return as.

All that was supposed to go in my cancer journal is going in a book – and I’ve got a lot written. It’s going to be a humorous book – none of that wah-wah-I-feel-bad-for-myself material. Hopefully it will inspire others and make cancer patients feel better.

I’m glad this is over. This is one Thanksgiving I am going to be sure to celebrate :o)

First Day Of Treatment

Wednesday, July 27th, 2005

Wow, there’s so much to update on. A lot of things have changed since the last entry. Right now, I’m in the hospital (Stony Brook) getting my first round of treatment. I was here since Monday, and will probably be here until Sunday.

Why am I at Stony Brook, you might ask. Wasn’t I supposed to be at Sloan-Kettering? Well, here’s the story on that: (more…)

New Job And Insurance Snafus

Sunday, July 17th, 2005

Well, I’ve got myself the job with the magazine. They’re willing to work around my doctor’s appointments and have been so nice to me so far. I start Wednesday. Woohoo!

I’m set to begin chemo soon, except I’ve run into a few insurance snafus. (more…)

Bring It On

Monday, July 11th, 2005

So I went to the oncologist at Sloan-Kettering yesterday. The final diagnosis was that I have Diffuse Large B-Cell Lymphoma IIA. That means I have cancer in more than one lymph node in the chest area, and that it hasn’t spread elsewhere.

I was given two chemotherapy options: (more…)

The Tickling Curl

Monday, July 11th, 2005

As each day passes, this whole cancer thing becomes a bigger barrel of fun.

 

Although unrelated, this morning I woke up to my head going pop. Well, it wasn’t my head going pop, but rather my right ear, which had an excruciating pain ripping through it and fluid draining out of it. At first I thought it was wax, but they had flushed my ears out two weeks ago at the doctor’s office.

 

So I made an appointment with the doctor. He said there was no sign of infection or wax in my ear, so he put this strange sucking apparatus in my ear, which measures the internal pressure. He determined that the fluid was cystic drainage, and that there was a micro-perforation in my eardrum. He put me on amoxicillin to prevent infection, because my immune system is shot, some Sudafed, and another medication in case the antibiotics cause other problems. I have a follow-up appointment in two weeks.

 

My niece and nephew are down from Binghamton for the weekend, so today we planned to go the beach at Robert Moses after my testing at Good Samaritan Hospital. They haven’t been to the beach for a long time and were looking forward to it. So all of us went to the hospital, bathing suits and towels in hand.

 

My test, a MUGA, was supposed to check that my heart was strong enough for chemotherapy. When I got to the hospital, they initially said the test was going to take an hour. They had to inject me with something to make my red blood cells stand out for the camera, which looked like a closed-MRI-meets-a-space-ride-at-Epcot-Center. I had to lay down on this long board, while these cameras closed in on me and my left arm was shoved into position above my shoulder. The cameras were only two or three inches above my body and stifled me.

 

The camera has to take a series of images – first a large one, then a couple of small ones. The large one was supposed to last for about 6,000 beats. However, the computer didn’t like some of my heartbeats and rejected them. So the large image, which was supposed to take 20 minutes in total, was only halfway done at the 25-minute mark. The doctor got pissed and deleted it, telling his assistant to start all over again. They changed some settings on the computer, so it would only track 40 percent of my heartbeats instead of the 60 percent, which was giving the computer “bad” heartbeat. The “bad” heartbeat was actually arrhythmia, which was probably due to all of the medication I’ve been taking. So instead of my heart beating at a normal pace, it was jumping from 60 beats per minute to 85 to 90 to 70.

 

“Only 20 more minutes, sweetie,” said the assistant, and he left the room.

 

So I sat there for 20 minutes. And all of a sudden I felt it. A piece of hair strayed in the room’s air conditioning and laid flat down the middle of my nose. In my squashed state, I was unable to move my arm to move the hair off my nose. It was bothering me greatly. If I crossed my eyes, I could see the curly piece of hair brushing the skin.

 

So I did the only thing I could do – I stuck out my lower lip and blew upwards. However, instead of blowing the curl away from my nose, I wound up blowing the end of the hair up my nose. Now not only the outside of my nose itched, but the inside as well. I couldn’t blow out my nose, otherwise more than that piece of hair would have come out, and I had no means of cleaning up. So I shook head violently from side to side for a few minutes and finally dislodged it.

 

At this point, I was getting impatient and severely annoyed… 20 minutes has passed, and I still was under the machine. The assistant kept coming in and out of the room, adding on 20 minute increments to my time being there. My mom kept calling from the waiting room to see if I was all right, so I told the assistant to tell her to go home with the kids, who were getting antsy, and come back for me later.

 

My left arm was getting severely cramped now. I actually began to cry because it hurt so much, and I couldn’t move until the imaging was over. The assistant apologized profusely, and as soon as it was time to move to the next set of imaging, he shoved my arm down and stuck a pillow underneath it.

 

By the time the whole thing was over, the one-hour test turned into three-and-a-half-hours. I got out, just having missed my mom, who left to bring the kids home. I then realized I had no cell phone or money, so I called home collect, and no one picked up. My blood sugar had dropped because I hadn’t eaten all day, and I was just totally miserable. I walked outside, sat underneath a tree, and bawled my eyes out until my mom came and picked me up. It was the first time I had cried over the whole thing.

 

So, tomorrow is my visit to the oncologist to find out the stage of my cancer and what my treatment options are. Wish me luck; hopefully it’s nothing too serious.

 

And Good Samaritan’s reading material rating? Two out of five stars. People magazine. I’m so sick of reading about Katie and Tom and “Desperate Housewives.” Next time I’ll bring a book.

Chalk-Flavored Apple Juice

Saturday, July 9th, 2005

It looks like the Prednisone the physician’s assistant at the Southside Hospital ER gave me to control the cough is working wonders. I have coughed maybe once – and only to clear my throat – since they’ve given me the shot. I take the supplementary pills once a day. Why didn’t any of the other doctors I saw for this cough even think of this? They all seemed so intent on making me take codeine – and I even stopped taking that since I got the Prednisone. The codeine just made me too whacky. Never again. I should just stick to my guns when I say I don’t want a medication.

Today I went to the radiologist for another CT scan, this time of my abdominal region. Apparently, it was not taken with the PET scan, and they just want to make sure that the cancer didn’t spread to the lymph nodes in my groin. Well, abdominal CT scans mean one thing – barium drinks. Oh, how I loathe thee. Just take a flavor, mix it with sidewalk chalk, and you’ve got the barium drink. Usually it is orange flavored – last time I had to drink barium, I couldn’t eat Cremesicles for years. This time they had two other flavors, banana and apple. I chose the lesser of two evils, the chalk-flavored apple juice.

I saw another woman drinking it in the office and already felt sick to my stomach. The nurse mixed the drink and handed it to me. OK, one drink, I can deal. I turned around to go back to my seat, and she said, “Wait, one more!” Two liters of “Apple Smoothie” barium with the juicy looking apple design on the front. Smoothie? Is that supposed to make the patient feel like it’s some hip yuppie-yoga drink? I don’t like smoothies very much to begin with!

So I gulped them down as fast as I could. My stomach began to cramp up – a side effect of barium, but I’m sure part of it was my disgust. After I managed to down the whole two liters, I had to wait for another 20 minutes to be called in.

Finally, I went into the scanning room and the nurse prepared the IV with the iodine solution in it. She put it in my hand and it actually hurt this time. I think that if I have to get chemo, I’m going to get a port, because I have really crappy veins. The vein in my right hand has already collapsed from all the blood work and IVs from the past month and a half.

The CT scan machine is a funny thing – it has these two little Pac-Man type faces that tell you when to breath in and hold your breath. The faces are so funny looking that it’s hard not to burst out laughing as you’re being scanned… which defeats the whole purpose of your getting the scan done.

The radiologist came to check in on me, and he asked, “So how did you know to go get tested for lymphoma? Did you have that tell-tale dry hacking cough that usually accompanies the cancer?”

I looked up at him in surprise. I replied, “The thoracic surgeon told me the cough had absolutely nothing to do with the cancer.”

He said, “I’m no thoracic surgeon; I’m just a radiologist. However, I’ve seen plenty of people with lymphoma come in here with that type of cough.”

Strike three for the thoracic surgeon at Stony Brook: first, he never called me, as promised, with the results of the biopsy; we had to call him. Second, he said he’d call me with pulminologist referrals, but never did. He claimed he called, but “I don’t leave messages.” Well, HELLO! I’ve been in and out of doctor’s appointments all week, of course I was going to miss your call! Third, he was constantly pulling information out of his behind. I swear, he was one of the most arrogant doctors that I’ve ever seen. Thank goodness I don’t have to deal with him anymore.

Monday, I have a MUGA scan (a cardiac test) at Good Samaritan Hospital in West Islip, then Tuesday it’s off to Sloan-Kettering. I then find out my treatment options and whether or not I can take the job with the magazine.

Speaking of magazine, it is now time for my Waiting Room Reading Material Ratings for all the doctors I’ve seen so far:

  • Chiropractor – great, up-to-date magazines, can’t get bored. 5 out of 5 stars.
  • My regular doctor – ditto for the great, up-to-date magazines. 5 out of 5 stars.
  • Stony Brook Hospital Lung Cancer Evaluation Center – great magazines, horribly out of date. 3 out of 5 stars.
  • Southside Hospital Emergency Room – dime store novels and a bunch of books left behind by Jehovah’s Witnesses. Amusument factor gives it 2 out of 5 stars.
  • Medical Arts RadiologyField and Stream, Sports Illustrated, and Digital Imaging (and it’s not about photography, it’s about MRIs). Hardly the feminine foray. 1 out of 5 stars

Emergency Room

Thursday, July 7th, 2005

Last night, I went to bed. Just as my head hit the pillow, I started coughing uncontrollably. I climbed down my loft, ran to the bathroom, and proceeded to throw up for five minutes straight. Mom decided she had enough and said, “We’re going to the emergency room.”

So I found myself in the Southside Hospital ER at 1:30 in the morning. I had to wait about two hours before they actually took me in, so I was stuck in this waiting room with two people who smelled like walking Marlboros and vomit. The room was absolutely dirty, with Pepsi cans and chip bags strewn about from people who were there earlier. I wound up watching four episodes of “Murphy Brown” before they called me. At least they had a good show on and not some garbage, which seemed to be the room’s theme – the only reading material they had were about 20 donated dime store novels. You know, the ones with a muscular-Fabio lookalike holding a fainting woman with a ripped dress and bare legs.

The ER was extremely cold, and even though the nurse promised to get me a blanket, she never came back. The doctor finally came, and when we asked him what his name was, all he said was, “Steve.” He looked at my x-rays and CT/PET scans that we brought with us, and he thinks the coughing could definitely have something to do with the lymphoma. He convinced me to take the cough medicine with codeine to quiet the cough, which I’ve refused twice already from two different doctors. I’ve finally raised the white flag with this cough – it’s really driving me crazy and I haven’t been sleeping well. He also gave me a shot of steroids in the arm. I’m glad I got it there, instead of the other choice – my rear – because it burned like hell for a while. Now my arm feels a bit bruised, but I have been coughing much less.

We wound up coming home around 5:30 in the morning, I watched the London bombings on TV for a bit, then went to bed. I had planned to sleep as much as I could, but the guy across the street weedwhacked his lawn around 11:30, so I got up. I’m still a bit tired right now.

I have an appointment with the oncologist at Sloan-Kettering in Manhattan on Tuesday to discuss my treatment options. She told me not to take the job with the magazine until I talked to her first. So, I called the executive editor at the magazine and left a message, telling him that the earliest I can let him know if I can accept this job is Wednesday. I really hope they can wait; I’d really like this job if I can take it.

Everybody’s been so helpful. A lot of my friends have been gathering names of oncologists and hospitals who have treated people they’ve known with Non-Hodgkin’s Lymphoma (Large B-Cell Lymphoma is a segment of the larger group of Non-Hodgkin’s lymphomas). I’ve received a lot of nice e-mails and IMs, even from people I haven’t heard from in a while, wishing me well. It feels so good that I have such great friends to support me and pray for me. Thanks, everyone :o)

Cancer: The Beginning

Tuesday, July 5th, 2005

I’ve decided to chronicle my cancer. I was diagnosed with Non Hodgkin’s primary mediastinal diffuse large b-cell lymphoma in July 2005. Here’s my story:

In April, as I was finishing up my senior year at Fordham University, I came down with a case of strep throat – my first ever. The nurse practitioner gave me a round of penicillin, and it went away.

May rolled around, and there was lots to do. I had finals, I had to pack up, there was Senior Week, and finally graduation. In the middle of Senior Week, I got another sore throat. However, I attributed it to the stress of everything that was going on, plus allergies – there was pollen flying everywhere around campus.

Graduation came and went, but the sore throat did not. Three days after I moved back home, I went to my doctor, who said I had a second round of strep. She prescribed me a Z-pack, which was a stronger antibiotic than the penicillin. A week later, I still felt like crap, and now it was accompanied by a hacking cough. I was given a third round of antibiotics, this time Biaxin.

I finished the round of Biaxin. The strep went away, but the cough got so bad to the point I was vomiting everytime I coughed. So I went to the doctor again, and she said, “This isn’t normal,” and sent me to get a chest x-ray.

I went to the radiologist to get the chest x-ray done – no biggie. The x-ray itself took all of two minutes. I got dressed back into my regular clothes after the test and figured I’d go right home.

Not so fast. “Um, Amanda, we’d like to take a CT scan of your lungs,” the radiologist said.

A CT scan of my lungs? What for? I really had no choice but to agree, so they injected me with iodine and took a CT scan a few minutes later.

It worried me. Why did they want a CT scan if all I needed was a chest x-ray? I asked around, and everyone told me, “It’s routine.” Not so, I would find out. They just didn’t want me to worry.

My doctor called me a few days later and told me to come into the office that afternoon, preferably with another person. She wouldn’t tell me what was wrong, only to come in. Later, when I went into the office, she told me that the CT scan was taken because the chest x-rays showed the lymph nodes in my lungs were severely enlarged. She said, “It’s probably nothing, but we’re going to take some tests to be sure.” They would include blood tests to check for sarcoidosis and a biopsy to check for lymphoma.

All the blood tests came out normal, so we decided to go see a thoracic surgeon at Stony Brook University Hospital for the biopsy. Pre-surgery, he looked at the CT scans and said that, even though the lymph nodes were enlarged, it probably wasn’t cancerous, but more likely infection left over from the strep throat and coughing bouts. He was still going to do the biopsy to make sure.

One of the pre-op procedures would be a PET scan, where they injected me with a radioactive glucose solution, which would make any possibly-cancerous regions of my body glow in the scan. Results showed that the lymph nodes in my lungs lit up like Christmas trees. “It’s a 50/50 chance you have lymphoma,” the thoracic surgeon said, adding that he was confidant it probably wasn’t.

I had the biopsy done, called a mediastenoscopy. It was an outpatient procedure, which meant putting me under anesthesia, making a two-inch incision in my neck, and getting a biopsy of the lymph node tissue by going behind my sternum. It left me in a bit of pain afterwards, mostly due to the hacking cough, which I still had. It was also painful to yawn for a week and a half, because it stretched the muscles by the incision.

A week later, we called to get the results of the mediastenoscopy. The thoracic surgeon said, “It’s a 95% chance you have lymphoma. We sent the sample off to the best here at Stony Brook, but we’re going to send it off for a second round of testing just to make sure.”

I waited for another week, which led to today. They called and said I definitly have lymphoma.

I don’t know any more information than that right now. There’s a lot of stuff online, but I don’t want to read it, because there are so many different forms of lymphoma. It’s like information overload. I’m just going to wait until I talk to an oncologist.

The next step is going to see two oncologists for separate opinions. One is the head oncologist at Sloan-Kettering in New York City; the other is the head oncologist at Stony Brook, which is overseen by Sloan-Kettering.

The weird thing about the whole thing is that the cough had absolutely nothing to do with the cancer. So if I didn’t get the cough checked out (I usually never do and wait it out), I would have never known. So someone up there was watching out for me.

Still no word on what this horrible cough is (my doctor thinks allergies, I think she’s just pumping me with too much medication). Next stop there is a pulminologist.

Overall, I’m not worried. In fact, I’m more worried about this cough than the cancer. So, the only way I can take things now is day by day.