Friday, March 30, 2007


When I left the hosptial it was on my own two feet. Ok, four if you count the walker. I was so proud of myself. My husband tried to put me in a wheelchair except that I couldn't bend my leg. So it was on my own power that I walked out. Still, it was cool.
I spent the following week with my sister at a friend's house in New Jersey. She worked me hard that week. But I will save that for another blog. The doctor sent me home with Jackson Pratt Drain Tubes. I gather this speads up the wound healing and staves off infection. I really didn't know what they were talking about before the surgery. I read the booklet. I looked at it online. They told me I could have up to two tubes. OK, that was fine with me. Just get this tumor out of me.
I am now in week three. They just removed one tube. I am finally home. The problem is the other tube. The problem isn't that it is inserted just above the back of my knee. No, that one is obvious. The problem is that I look like Frankenstein. I have tubes sewn into my body. Tubes with liquid going through. Gross. It takes some getting used to - and the big black stitches up the back of my leg don't help.
Just call me Frankenmom.

Thursday, March 29, 2007

Only another Mother

Only another mother would understand. That is what I keep telling myself. Frankly, I am ready to commit hari-kari if I watch another episode of SpongeBob. Let me go back a bit and explain.
On Saturday when I returned from New York, I came into a house full of the stomach flu. My poor husband had been up all night with poor son. My daughter was avoiding everyone so she wouldn't get sick before her big class trip to Washington DC. My other daughter was having a small breakdown over a large project due in a few days. I was tempted to turn around and drive back to New York. Welcome home Mom.
Actually, I did feel welcomed. The house was spotless. A real feat considering all of the problems of the day. There was a large sign across the hallway. And lots of hugs and kisses. A very good welcome indeed.
So it is many days later and I am still nursing my son back from the stomach flu. We are watching many cartoons and drinking at each commercial. Thank you Lord for suppositories (you know what I mean Moms.) There is an upside with all of this. He is so cuddly and wanting to be held. It is good to be home!

Wednesday, March 7, 2007

My Fear

Written in January before the initial consultation with MSKCC.
I am leaving for New York in less than 12 hours. It is not on my list. In fact, I
never dreamed that I could go back there. But go I will and happily with hope in my heart – skipping like a Disney princess toward her dream.
I don’t really have a choice. For the last five weeks I have been researching like a crazed person. Every chance I get I perch on the side of the chair by the desk and surf the Internet. Yeah, perch because I only can sit on half of the my but. Marvin has the other side (for those who don't know - I named the tumor Marvin)
I read and read. A medical dictionary open on one browser and abstracts on another. Boy I wish I paid attention in college biology. I also wish these guys would write in English.
I know that they are writing for their peers but what about their patients? In reality, there isn’t much information about my fat cancer. I know that there are five subtypes (I’m not sure what I am right now – first question for the doctors) and the subtype determines the outcome. After four death speeches from my doctors, the outcome doesn’t look good. So I go for second opinions. Ironically, the insurance company will help with as many second opinions that I get. Despite how many times, it’s still called a second opinion. Hm. Let’s hope my next one is not a death speech.
That’s why New York. I really need to visit a large cancer center that has seen what I have. God bless the doctors here but many haven’t seen this. I need someone who knows what they are talking about – researching it and curing it.
I spoke with a priest last and we spoke a bit about the end. At what point do I stop the cutting on my cancer and just go home to be with my family. I hear and write that statement and only hear – at what point do I give up?
I know that at some point, that is a reality. I have learned the difference between realism and fatalism. I clearly defined line in my head. Realism is that the odds are against me. Fatalism is that stop fighting. For me I will think ahead and plan but I am not going to stop fighting.
So again that’s why New York. If I decide to go the route of chemotherapy recommended by the doctor’s in Cleveland and it fails – then I go to the second round of defence. That’s why New York.
Does it sound like I am tyring to justify the trip? Yeah, it does. This trip is hard on my family in a number of ways. Emotionally and financially. My girls have to stay with friends – okay that’s not so bad. Adam is going to his grandparents – and that’s not so bad either. I get to spend a few nights alone with husband. Okay, what the heck am I worried about?
So this is the first installment of my trip to New York. I don’t know why I am so nervous. I think that my fear is creeping back and I am afraid that New York will be death speech number five and six. I am afraid that I am going to come back and have to tell everyone that again there is little hope. I am afraid that it won’t be a death speech but multiple trips to a city that exhausts me. I am afraid that the cost won’t outweigh the outcome. I am afraid that I will have to ride that damn wheelchair through Times Square and bump through puddles. See, real fears.

Tuesday, March 6, 2007

Octopus Women

During my stay in the hospital a few weeks ago, I was struck by the similiarity of myself and all the other patients. We wore the same lovely, designer gowns. Some, of course, less than others. We were all attached to blue poles. We all woke up at 6am and went to bed at 10pm. No one slept in their beds during the day - we dosed in our chairs.
Oh, you don't believe me - at 6am promptly a team of nurses and assistants would arrive bedside turning on lights, attaching blood pressure cuffs and sticking wands in our mouths - before we cracked our eyelids. By 6:15 we were all seated across the ward and the beds made. At 6:20 the doctors arrived for daily assessment. And at 6:30 we were asleep sitting up in our chairs. What do you expect for a group of recently operated older people (myself excluded)?
The worst part was the walking. Some depraved individual had determined that 14 laps around the floor was a mile. Am I the only one who thinks that someone had too much time on their hands? So after breakfast, the rounds began. The goal was to walk 14 laps before bedtime. My goal on day one was 6 laps. I know, I know - I'm a wuss.
So here I was only twelve hours after surgery and I'm walking the floor. I have tubes coming out of me everywhere. IV's (2), epidural, drain tubes and others that I don't want to think about. I looked like octopus women.
All these tubes were attached to a tall, blue wheeled pole. Everyone had a blue pole. Everyone. We clung to these blue poles like a life line. The epidural had a button on it - the button delivered the pain med. The pain med was attached to the blue pole. You didn't go far from the blue pole. Acutally, we spent most of the day unwinding the blue pole. Like necklaces tangled in a jewelry box, the tubes would get tangled around the blue pole. Hey, it passed the time.
On my first day - 6 laps - I struggled putting one foot in front of the other. Older people - by like 20 years - would snap at me to move aside to the slow lane. They would zip to the corner and cough. Zip again and cough. Down the hall to the next corner and cough. About 8 to 10 people at a time would be walking the halls. There I was crawling like a tortoise to the one corner - attempt to cough - and crawl again. My second time around I noticed a hall midway that cut the floor in half. I took the hall and cut my walking in half. My husband noticed. I told him that I would walk but it would have to more frequently with shorter trips. He sighed.
The next day my nausea was much better. Pain was still pretty constant but they couldn't do anything with my allergies to narcotics. Which just sucks. So up at the usual time sitting and soon the walking began. I have to admit I did much better. In fact, I walked 14 laps that day! A whole mile! Yeah me.
I did ask the nurse why the others seemed to have it easier and walk faster. Was it because my surgery was more intensive? Of course, she replied. But also, remember they are on morphene.

Saturday, March 3, 2007

Clean Margins - Music to My Ears

Late Wednesday night I received a much anticipated phone call. For days I have called New York asking if my pathology results were in - no go. I have called so often they know my voice. Hello Mrs. Schlosser. We do not have them in yet. Call tomorrow. Have a good day.
Finally, they called me. The nurse sounded so happy on the phone. This is a good sign. So far, all the nurses who have called sounded regretful or even toned. Not this time. She said that the doctor is very happy with the pathology results. Clean margins! They removed all of the tumor.
I admit I cried. Ok, that is not much of a stretch seeing as I cry over just about everything. This time, there were tears of joy. I hugged my children, called my husband and father and opened a beer. Yeah, it was 6:30 pm and we hadn't eaten dinner but I would've opened champagne if I had it.
So this begs the logical question. What next? The leg surgery is scheduled in about two weeks. And I will be there for a few weeks. The surgery could be involved and we won't know until we get there. We also won't know about the recuperation until the surgery. In other words, we just don't know.

Scanning and Scanning Again

When the doctor told me that I had cancer I was immediately scheduled for a CT scan of the rest of my body. This was to determine if there were tumors elsewhere. At the time I did not realize the implication. Now I know that it means did that the cancer may have metastasized or spread from the original site. In my case, that would put me at stage IV or pretty close to the end.
The CT scan was pretty easy. It was by contrast and I am allergic to iodine. They premedicated me and the test went well. Due to the holidays, it took quite a bit of time to get the results. There appeared to be a small mass in my right lung and PET scan was ordered to determine what it was exactly.
Am I the only one who wonders if there was a DG scan?
The PET scan was in one of those mobile units that only came to my hospital every Saturday. The semi trailor was connected to the back of the hospital and I was had to fast four hours before the test. In this case, I woke up that morning to the phone ringing and they were going to reschedule my test – move me up three hours. So I was not allowed breakfast. My fasting was going on 16 hours.
The test went well and pretty quickly. Even nicer was the fact that I could wear all my clothes and didn’t worry about metal. They shot me full of a radioactive dye, I waited 30 minutes and then the test started. 25 minutes later it was over. I certainly hoped my husband was waiting with a Big Mac. I was ready to chew my arm off.
I sat up from the test and received my home going instructions. Was I going near an airport? By a federal building? Riding public transportation or through a tunnel? This is Canton right? Point me to the closest tunnel – two hours away in Wheeling. I must have looked puzzled because the assistant handed me a paper that explained to the authorities that I was radioactive. So radioactive that I would set off the bomb detectors!
I said that the airport, federal building or bus was not a problem. Could I still go to the grocery store for milk? Nope. Stay in the car and send in my husband. There goes dinner out. I was also not around my children. No hugs or kisses for 12 hours. No tucking into bed or how was the test? I could only wave from the other side of the room. I stayed upstairs the whole night. I think my husband was worried that he shouldn’t sleep in the same room. I told him he didn’t have a choice.
My only worry was for the septic system. The next day would it glow in the dark? Would they see it from space? Could this cause problems for NASA?My husband was worried for my safety. If Osama bin Laden captured me, could he make me into a bomb?

Thursday, March 1, 2007

My Radiation Simulation

Today I met with the radiation oncologist. I feel so stupid. Who knew there were so many different oncologists? I thought there was only one kind. This is worse than buying bread – wheat, potato, low carb, white. There is too much to choose from.
We got the run down on what to expect. There are some pros to this cancer thing. I’m not supposed to lose weight. That sounds good during Christmas cookie season. I will also loose the hair permanently on the back of my thigh. Yeah! No more twisting around to shave my thigh in the shower. I like this.
They schedule me for something called a simulation. I guess this is where they set up all the computer stuff and try to figure out the best way to zap the football. My girls and I have decided to name the football. If I’m going to live with it – it should have a name. I chose Marvin. I never liked the name and certainly don’t like this tumor. Sorry to all the Marvins in the world.
Back in the far corner of the radiation oncology department is a lowgrade CT machine. A small donut that looks like the younger brother of the main one in the hospital. Off go the clothes. No time for modesty here. I didn’t tell you before the football was now reaching up into my gluteus maximum (yeah, the butt) and down to my knee. Marvin was a nice, healthy, bouncing tumor.
So I stripped. From the waist down. Except for my socks and shoes. And the blowing in the breeze hospital gown. I looked beautiful. Up on the table I went. A Herculean effort on my part and unfortunate for anyone standing behind me. That hospital gown only covers so much.
The first simulation was on my stomach. I lay there for an hour as they manipulated my leg and body. Scanned the tumor. Moved me again. Scanned the tumor. Moved me again. Another scan. You get the picture. It was all a piece of cake until the doctor came out and said we need to protect the anus.
Excuse me. Anus means my butt right. He looked at me and calmly explained the problems if they radiated that area. I would be in real pain every day. So they had to know where it was. There was only way to find out. I said that I knew where it was - and they could see where it was - so why do we have to do this. The CT scan couldn’t tell where it was. I now believe this is an evil machine wanting to inflict harm.
So the humiliation continued from the stomach view. While I was gussied up - butt and leg in the air with my face down in a hospital pillow, I was introduced to another gentleman. He didn’t have a surgical coat on. I thought he might be from billing. Were they going to make me pay before they continued? Half now and half on final treatment.
This guy was the dosing guy. He helped to decide how much I would glow by. Let’s count the number of people in the room I am flashing. The radiation oncologist, the radiation technician, the nurse, the nurse assistant, the radiation technician intern, the dosing guy and the physic’s guy - there may be more but it was to crowded to see.
I am so proud. I think that I may have a broken a record for flashing the greatest number of people - next to that guy from the Oscars.

My Diagnosis

It’s been two weeks since my biopsy. My family has gone home reassured that I’m not going to die this week. The wound site pulses. And children are on edge. What fun we are going to have for Thanksgiving! Pass the turkey and oh, Aunt Marge did you hear about my football sized tumor.
Yes, it’s a tumor. After surgery, the beautiful chief resident told me it wasn’t an infection but a tumor. The question is – what kind? Benign or malignant? I don’t need to tell you what I’m pulling for.
Apparently the pathologist is on vacation. Who says this guy can take a vacation? Doesn’t he realize I’m getting phone calls day and night from back seat doctors who all know more than he does? What gives him the right to lie on the beach when I can only lie on the couch?
The worst part right now is I’m off the drugs. That’s right. All drugs except for -those lovely, don’t work for me, over-the counter pills. See, I had a reaction to the narcotics. So off I came from the drugs. Of course, the docs all said that I could take them. But my family hid them. They are so mean. The doc gave me another prescription for a milder narcotic if I needed it. Funny how once I came off the drugs, the tremors and all the symptoms went away. Still no diagnosis. No less stress. But no weird symptoms. Good, Huh?
Finally, after waiting and waiting, only days before Thanksgiving, we get the call. Yes, it’s underlined so you can hear the reverberation through the room. The call. It’s the cheerful nurse, the surgeon’s right hand, who delivers the news. I’m sorry you have lipsarcoma. High grade. Highly aggressive. You need to start radiation immediately. We will then remove the tumor.
Lipo suction what? No, liposarcoma. This is rare. Sarcoma is cancer of the soft tissue. Liposarcoma is cancer of the fatty tissue. Oh I say.
Inside, my world tilted. Outside only my voice quivered. I was told that there would be additional tests. To check if the cancer metastasized. If it hadn’t, I had a good chance of beating it. Stay strong she told me. They would see me at the end of radiation.
I hung up and the front door opened. Two of my son’s tutors were here to work with him. I didn’t have time to cry. I didn’t have time to process. I could only thank God that my daughters were at dance and not home. So I joked. I stayed positive. There would be no negative thoughts here.
The bottom line is I have fat cancer. Nothing sexy here. No breast, cervical or uterine. Nope, fat cancer. Ironic, huh?
What color do you make a ribbon for “Let’s Cure Fat Cancer.”
I wish for the moments of hope before the phone rang.

My Biopsy - The Beginning

I have a mass on the back of my left thigh. At first it was the size of a walnut, then a few weeks later my General Doctor said it was about an orange. Now my oncologist has told me it’s the size of a football. I said he had to come up with a better analogy – we were using food. How about a loaf of bread? Pot Roast? Coconut?
The biopsy was held in a teaching hospital. Right before surgery, feeling loose and relaxed they give me one of those forms you sign where they can film and lecture during the surgery so we can teach the next generation. You don’t really know what it means until you meet the cast of Grey’s Anatomy. They look like they just learned to brush their teeth. All shiny and new like Barbie Dolls on Christmas Morning.
The doctor comes out to greet me in the surgical preparation area with his support crew ready to cheer him on or comb his hair. I’m lying there with husband sitting beside my bed trying to look my best with my hair smushed flat in the back and standing up on top. How else do you look lying in bed all day? Of course, my doctor is young, handsome and compassionate. I’m not sure he is real. He gives me his winning smile with the full entourage behind him. He’s reassuring and kind. Through the haze of drugs I hear the ‘this surgery is easy’ speech. Since he uses a football analogy for the mass I expect his entourage to begin cheering behind him. Give me a G! Give me a O! Give me a D! Give me a O! Wait how do you spell that?
At the time, I wondered why he signed my leg. I thought it was rather narcissistic of him. Like he was laying claim to my leg. Who says he can have my leg? Does this give you any indication of the drugs I’m on? After the fact I realized it was so he didn’t operate on the part. Sorry Mrs. Schlosser, the bad news is we didn’t biopsy your football. We bypassed your heart.
They wheeled me into this small room that was supposedly an operating room. The reason I question it is simple. Who paints a surgical room mint? There are no shiny metal or reflective surfaces. Very disappointing for a surgery room. Grey’s Anatomy would redecorate immediately.
Except for the windows. Windows everywhere. And there are bright, shiny faces of young polished people peering through the windows like this is the annual Christmas display. Please mommy, can I watch the cute guy cut into the bloody football?
As I wait for them to begin prep I notice the anesthesiologist playing with a little box on my IV. I decided this is my little happy box. This little box will put me to sleep and take my pain. I really like the little happy box.
Before he plays more with the little box, I get a few moments to look around as they decide how to move to the surgical table. There are cameras everywhere. Up above on the walls. On the table. Either I look really good or this is one heck of a football.
I strain to look over into the far corner and there on the big screen is the MRI of my football. Pulsing away as the beautiful female chief resident scans through the MRI. Surrounding her is the cast. They even carry text books. Staring with intense interest at the screen flipping through their books. Why are they flipping through a book just before my surgery? This can’t be good.
I hear the chief resident listing the possibilities of what the mass could be – infection, benign tumor, and malignant tumor like a sarcoma. The residents seem confused. They flip harder. Sar what? Just when I want to raise my hand and ask a question – they turn on my little happy box.