Tuesday, March 20, 2007

Everybody's Sick Chpt 32

OCTOBER 4, 2001
I don't feel all that great today, but then again neither does anyone else, Mark is still so sick he can barely get out of bed and Ronnie is coming down with what ever it is that he has. Normally all this illness would only be a miner inconvenience, but it does happen to be the day after a chemo treatment, and I feel like hell. I should be resting until it is time for me to drag myself out of bed and go to work but I can't, I have to get the girls to school. I wanted to keep Ronnie home, but no matter how sick she is she insists on going to school, considering how horrible 5th grade has been to her so far, I find it amazing. As I have said before, 10 years old is just too young to start middle school. On the plus side this school does isolate the 5th graders, for about 80% of their day they don't see the older kids. On the minus side, last year in 4th grade at the elementary school these kids were in one classroom for most of the day, they switched teachers for math and social studies only, there was a bathroom in every classroom and the lunch tables were assigned. Suddenly, these children are switching classrooms every 45 minutes, they have go down a hall to the girl's room and the lunch tables are controlled by the self-designated "cool kids." More than once Ronnie had to battle for the right just to be able to sit down at a table and eat her lunch.
I haven't even started ranting about my problems with the gym teachers, those former "cool kids" who now have the power to make any non-athletic child's life miserable. To be fare Ronnie did have one good gym teacher for most of the fifth grade. At first the teacher yelled at Ronnie for "not trying or tiring out to easily." When Ronnie told me about how she was being treated by the teacher I contacted the woman asked if she had reviewed Ronnie's blue card, you know the card that asked if a child had any disabilities.
I explained about the problems about Ronnie's bad feet and ankles, and asked the teacher what kinds of information (such as a note) form Ronnie's doctors the teacher needed to prove that there was a legitimate problem? She said my word was enough and that conversation solved the problem of gym class until that teacher was struck in the head with a shot-putt (I kid you not) and was out for the rest of the year. The man who took over the class was not as cooperative and has treated Ronnie as badly as he treated all the other non-athletic children in his care.
Ronnie has told me that she loves the freedom of walking down a hall and not being in line with a whole class and the teacher stopping every five minutes yelling at the class because a few kids are misbehaving. On the other hand the hallways are one of the few places where the teachers are no present. So it is in the hall where all retribution for some slight that happened in a class takes place. Did I mention that Ronnie had a stalker? He is another 5th grader that follows her all over the place, he is annoying, but harmless.
Middle School has been such a very unpleasant experience for Ronnie and if I hadn't gotten the cancer I probably would have pulled her out and homed schooled her this year, but I just wasn't up to it.
Leah on the other hand is having a great time, she likes her teacher and so do I and every thing seems to be going well for her except to day, because to day is picture day and Miss Fashion has to look perfect. In the last few days I have washed and ironed two or three different dresses. When she finally decided which dress she wanted to wear we discover that the dress was missing a button. So it was off to the store I went to find new buttons for the dress, I got lucky and found a match so I didn't have to replace all of the buttons. Then she changed her mind again. Remember she is only 7 years old, I can't wait until she is a teenager.
I normally don't indulged this kind of behavior, I reasonable, but not a push-over especially compared to some of the yuppie parents in this town. But I feel guilty because I haven't been able to give them the kind of love and attention that I use to. I am too tired to play with my daughters, I am even to tired to listen to them for long periods of time, something that girls seem to need. I have not been active in Leah's brownie troop, and Mark has been taking them too most or their activities and play-dates. So now I am spoiling my kids is silly ways, I polished Leah's nails even though her hands will not be in the picture and I let her…I don't believe this myself…wear lip gloss. Oh @#$% I've become a yuppie parent.
Back in July when Diane organized the people cooking for us, she had more volunteers then there were days that we needed dinners, that meant that there were some people who wanted to cook who couldn't. So when I started my chemo treatments Diane asked me if we needed dinners again. I could have handled the cooking (I think) but why not? I told her to work it out so that we would get dinners delivered for five days after each chemo treatment. This arrangement worked out really well, I didn't have to cook and some people who wanted to help me could.
I am by nature a very private person, many times during my treatment and recovery I would have been happy just to be left alone, but the people around me seemed to need to be needed, and I under stood this. I know how good it feels when I bring bags of food to the food bank, or when I help cook a meal at a homeless shelter. People need to help, and although it is hard switching from the helper to the helpee I felt that it was important to sit back and except almost any offer that some one gave. The only ones that I turned down were the offers to clean my house that seemed just too invasive.
I got through picture day just barley, the next day was just as bad. Mark was still sick, but he has to drag himself out of bed in order to write his sermon. His sermons run about 30 minutes long, and some statistics guy figured out that the average minister spends about one hour working (writing/researching/editing) for every minute that that he/she speaks. So Mark needs to work. All of his meetings were canceled for the week. Ronnie is so sick that she has agreed reluctantly to stay home. On Fridays, and I usually work from 10:00 am to 5:15pm but that day I worked 4 hours, that is all that I could handle. I wanted to be at work because unlike my house, at work I will not be around sick people. One of my biggest fears since starting chemo is germs. During chemo treatments many of your white blood cells are destroyed and your immune system does not work very well, that makes you vulnerable to illness. So I became so paranoid that I act like the love child of Howard Hughes and Michel Jackson. I wore the cloth gloves when I worked, at home I wore rubber gloves when I cleaned and not just for dishes, any cleaning, when I was up to it I clean my house like crazy.
I read somewhere that one of the dirtiest public places is the door handle in a public bathroom (not everyone washes their hands) so the article said to use a paper towel to open door to exit the bathroom. This is a practice that I still use to day. If you didn't know that I was under going chemo and you saw me in public you would have thought that I suffered for obsessive-compulsive-disorder. I did act a little weird, on the other hand I wanted to get though my treatments without getting any infections.
One of my co-workers bought a whole bunch of baby wipes for us to use at work, and she cleaned the phones that we use a few times each day. Another way of protecting me was that my co-workers waited on patrons who looked sick, keeping me away from germs. So, there I was trapped at my home with two sick people, trying to take care of them without touching them or breathing their air not an easy thing to do. By Saturday I was exhausted, Mark and Ronnie were felling better so I spent the day in bed, poor Leah, she has no one to play with thank goodness for VCRs.

October 8, 2001
We g0t an extended weekend because of Columbus Day which was good because we don't have to get up early on Monday and we all slept as much as we wanted. When I pictured my hair falling out I had images of standing in the shower and rubbing my hair to help it fall out. Not. Wet hair and hands don't mix, every time I touched my head all this hair stuck to my hands and was hard to wash off. I quickly realized that all I could do was to stand in the shower and let the action of the water remove some of the loose hair, it was working-for awhile. Did I mention that I like hot, I mean really hot showers? Well I do. I like the room warm also. One of the great things about this house is that both up-stairs bathroom have built-in heaters in them. With a flick of a switch warm air will cascade down from the ceiling and warm up the bathroom.
So, here I am standing in a warm shower, the water flowing and my hair sliding down my back when I started to feel faint. I immediately go out of the shower and sat down, I didn't feel any better, I managed to get dressed, (even as I was passing-out modesty prevailed) and stepped out into the hall. I was hit with a temperature drop of over fifteen degrees it helped wake me a little, I slowly staggered down the hall frequently sliding against the wall.
"Mark" I whispered, just loudly enough for him to here.
"WHAT!" can a very annoyed reply.
"Help" my whisper getting softer. I made it to the bedroom and fell face down on the bed. I was drifting in and out of conscious. The help worked, he can running into the bedroom.
What he saw was his wife lying face down on the bed, my face was very white, and my body was covered in sweat, he came over to me and touched my back, it was ice cold, he was scared to death and wanted to call 911. I told him believe it or not I was feeling better than I did in the bathroom and to give it a few minutes. He put a blanket on me.
"I'm still cold" I mumbled, so he put another blanket on top, slowly I warmed up and started to feel better. With in a hour I was almost normal. We didn't call the hospital because I knew that they would want me to come in and the girls were home from school. Remembering how frighten Leah was when she came with me to the blood bank, I just couldn't put her through another trip to the hospital.
October 9 2001
After we got the girls to school I called Dr. O’Hara and told her what had happened to me, my luck she took the day off. She has some nerve trying to have a personal life, anyway the receptionist transferred me to Eva, and just as I excepted she told me to come in to the hospital. Mark drove me there and we saw something that we had never seen before-the parking lot was full, there was nowhere to park. I figured that this would not take long so I suggested to Mark that he go and have lunch at the local Friendly's and while he is there could he get me a chocolate milk shake (I don't understand why I am gaining weight). Then just wait out in the front of the cancer center. He liked the idea and off he went.
Nothing ever goes as planed, I check in and have my blood tested and waited…and waited…and waited…while poor Mark was out in front circling the cancer center because the valet boys didn't like him hanging around their turf. More waiting…finely Eva came over to me and told me that every thing looked fine, she wasn't sure why I somewhat black-out; maybe it was because of how hot the room was or maybe it was because I (as we discovered in talking) didn't take all of my medicine. Well, I felt fine so I stopped taking the pills. I left with the instructions to take all of my medicine as instructed and keep the bathroom at a temperature that is not sonorous with the tropics.

Tuesday, March 13, 2007

Round Two: Chapter 31

October is Breast Cancer awareness month and every where I looked there was another magazine cover/TV ad/news story about breast cancer. In the past I had paid very little attention to these stories. This year it is just the opposite, now I read everything that I can get my hands on, just reading the covers of all the magazines that the library subscribes to is enough to give my brain 'cancer overload'. Many of my friends and co-workers gave me articles that they thought might interest me. The good part about all this is that as they try to inform me, they are also informing themselves. Just about every woman who has helped me in the last year, either by cooking for me or working extra hours to cover for me or just holding my hand has told me the same thing.
"I have made an appointment for a mammogram; I am no longer afraid." Through out my treatment there have been highs and lows. There were brave times and not so brave times. The thing that I am most proud of is that just about every one of my friends and co-workers had a mammogram with-in a few months after they learned of my diagnose. I found it interesting that even with all the information out there, for many of my friends it took the disease becoming personal for them to act.
One does not go happy to their chemo appointment, but one does go. My second appointment was scheduled for around noon so Mark should be able to take me, but we are not so sure that he should because he has been sick for the last few days. I love it, I have cancer, I am going through chemo and HE is the one who is lying in bed sick. There is a joke here somewhere, but I want to stay married so I'll let it go.
I dropped the girls off at school, Ronnie is going on her first middle-school field trip and she is very excited. All of the 5th graders are going to Sandy Hook, which is a popular public beach along the New Jersey shore. I am a little jealous, I am going to spend my afternoon in the hospital being injected with poison, and my daughter is going to the beach. There is no Justice in the world. The kids are not going there to enhance their tans, oh, no, this is a scientific expedition, they are going there to collect and label sea shells. Nice.
When I got home Mark and I decided that he was too sick to take me to my treatment (Ha, ha Mark is too sick to go to the hospital, hey I find that funny). Not only would it be tiring for him to take care of me while he was so sick, but the other chemo patients should not be exposed to his germs. So, I call one of the Church ladies name Betty and ask her if she can drive me. I did this for two reasons; one I needed someone to take me to the cancer center for my treatment, and second I felt that Betty needed make peace in her own mind with the cancer-center .
Betty is a widow somewhere in her sixties, with three grown children and 2 grandchildren. She is short; then again to me almost everyone is, her hair is gray, but always beautifully styled and she always looks put together. In other words she is a grandma with style. I love to listen to Betty talk because she has the nicest southern accent I have ever heard, there is something about her Tennessee sing-song that is so soft and delicate.
Betty has done so much for me and my family, she has made dinner for us, taken the kids on an outing and helping out in emergencies as a babysitter, plus I really enjoy her company. So she was the natural choice. Yet I still hesitated, you see Betty has only been a widow for less than a year and her beloved husband died of cancer. So a trip to the cancer center would not be a new experience for her, it might be a trip down nightmare alley, I was not sure, but something told me to call her-so I did.
“I would be happy to take you” she said in her soft southern accent “What time should I pick up?” At 11:00am the doorbell rang, I answered the door and was greeted by Betty saying…
“When is the last time you watered your plants? They look like they are dying.” She then walked in to my house right past me and went directly into my kitchen to find my watering can.
“You know I have been missing my mother lately.” I thought to myself “and now you make me feel like she is right in the room. Not only that” I kept thinking “I didn’t even buy the plants in the first place, they were a gift” I am starting to wonder how many substitute mothers I had anyway. With my plants taken care of, Betty directed her attention to me, for a minute there I except to hear her say…
“Your not going out looking like that are you? Bless her heart all she said was
We drove to the hospital, while looking for a parking space I imminently realize that Betty and I operated very differently. When I am driving I go right up to the second level before I start looking for a parking space, Betty refused to leave the ground level, and she drove to areas on the ground level that I didn't even know existed. Finally we found a space, park the car and head for the cancer center.
We walk past the main entrance, which was filled with the normal groups of smokers and cell phone users, then we reached the end of the semi-circle. At this point I usually make a 45-degree right turn and start walking down a slope toward the cancer center. But Betty stopped me.
"Don't you know the back route?" she asked
"The what?"
"The back route, past the meditation garden!"
"The what garden?" I said again, I'm real good with words.
"Follow me" she stated then made a 20-degree right turn and started to walk. I followed her onto a patio that was level, not sloped downward and we walked behind the building that I normally walk in front of. It was a nice walk, I saw Parts of the hospital that I had never seen before, back exits and entrances, most of the people walking back here were staff, I could tell by their clothes and/or ID tags that they all wear around their necks. Betty pointed out the meditation garden, it is not a garden with flowers, but an area on the patio that is distinguish by that fact that there is a sitting wall around most of it. In the center of the garden is a swirl patter marked on the surface. There was a woman walking on the swirl pattern deep in thought.
"The garden helped me a lot when I was here with my husband." I nodded like I understood. The problem was I didn’t. I don't go for anything New Ageish, I guess that I am a traditionalist at heart. I keep a straight face at the library when a patron return a hand full of new age/self help books telling me how wonderful they are and I should read them. I just smile and say I will. When the hospital gave me mediation tapes I gave them away, being the cynic that I am they don't relax me, they make me laugh. So when I looked at the woman walking on the swirl the image of Dorothy in the "Wizard of Oz" when she is in Munchkin Land and asks the good fairy where should she start her journey. The good fairy says something like starting at the beginning, so Dorothy walks to the very beginning of the swirl, which is located in its center.
We walked past the back of the chemo area of the cancer center, here were the windows that are to my back when I sit in one of those blue chemo chairs. Betty walked up to a door and opened it and lo-and-behold we were in a back hallway that lead to the cancer center waiting room. No more going up and down stairs, I like this route.
On the walk Betty started taking about her husband, and the memories of all the time that they had spent in the cancer center, although I liked the new path she just showed me I was starting to think it was not such a great idea to bring her here.
I checked in, had my blood check and then see my oncologist. We start with the question and answer session where I discovered that I had been taking my medicine wrong. I had been taking the two different pills at the same time, where-as I was supposed to be taking them an hour apart.
I can't help but wonder sometimes; why does a person become a doctor? And if you become a doctor, why an oncologist? I mean you have a job where you watch people die almost every day. It has to be hard. On the other hand you get to see patients who 10 years ago, heck 5 years ago would be dying and now thanks to modern medicine the patient will live many productive years. So, I wonder do the good days out-way the bad? I felt bad because I was about to give my doctor a hard time. I whine to her about my hair falling out and the ten pounds that I have gained. (On average someone who has the same kind of chemo that I am having gains between 5 to 10 lbs). Dr. O had predicted that I wouldn't gain any weight. Opps, I hope her other guesses (like how to treat me) are more accurate. I also whine about the fact that my face is getting puffy and I have pimples.
"It is only temporary, everything will go back to normal when you treatment is over." Basically she is telling me to deal with it. That’s what I like about her, she lets me vent, then brings me back to reality. In spite of my whining we have a good visit. Next we got in to the examination room, she tells me that I am a really good healer, I tell her that my father says healing fast is a genetic trait in our family. She also states that Dr. R did a very good job with the reconstruction, and that (looking at the floor again) not all plastic surgeons have his talent. I'll try to remember that when I am paying his bill.
After the exam I we back to the waiting room where after a few minutes Betty and I were escorted back to the chemo section. A new nurse (new to me that is) greeted us and introduced herself to me, that is after she and Betty gave each other a big hug.
"It is so great to see you." says the nurse, genially happy to see Betty.
"Jenny, I so happy to see you!" I just stood there for a few seconds until both women remembered that I was there, so much for being the center of attention.
Betty introduced Jenny to me and we follower her to the area with the blue chairs, again I selected a chair around the center of the line.
Once we got settled Jenny set to the task of trying to find my one good vein, just then Eva walked over saying
"lots of luck finding Traci's one good vein." Everybody is a comedian, I thought. A that moment Eva noticed Betty.
"Mrs. B!!! What are you dong here." Both women embraced. Hello, I'm over here, I am the one with cancer, fake cough. Finally Eva turned back toward me saying
"You're in good hands with Mrs. B." Then she left, while Jenny kept hunting for my one good vein.
Betty wass sitting across from me reading a book while I disappear in to my book-on-tape. I wanted a comedy this time and a co-worker had recommended a book called "A Walk In The Woods" by some guy named Bill Byrson.
"What is the book about?" I asked.
"Walking the Appalachian Trail." He answered.
"I don't hike, I don't camp, in fact my idea of ruffling it is flying coach." He rolled his eyes, then said.
"Do I look like the outdoor type?" Actually he didn't. "Just trust me." I did and have trusted his judgement in books ever since. I remembered the book from when in first came out when I was working at B. Dalton. The coven intrigued me, it was a picture of a wooded area and a brown bear's head. The funny thing was it looked like someone was trying to take a picture of a wooded area when a bear just happened to come by and look in to the camera when the picture was snapped. Well, I though, if the cover could make me laugh the book might just be funny also. I have since become of huge Bryson fan, his funny travel books have taken me through parts of England and other European countries, Australia, and other sections of America.
So, there I was with a needle pumping steroids into my body, laughing at my tape when Betty taped me on the shoulder,
"I'm hungry, and I am going to get myself a sandwich. Are you hungry?" Now that she mentioned it I was. I asked her where she could get food and she told me there was alot of food at the kitchen area. The chemo section had its own kitchen and there were fresh sandwiches brought in every day, also there were tons of cakes and cookies that the patients brought in for other patients, their families and of course the beloved staff. We checked with Jenny and she told me I could eat, so Betty got us each a sandwich which I ate v-e-r-y s-l-o-w-l-y.
Jenny started giving me the chemo part of the program when she suddenly stop.
"OH, NO" she says very loud. As a patient, oh, no is never an expression that you want to hear. "I forgot you pop." I didn't know what she was talking about. "Your Popsicle, you need you Popsicle." Betty volunteered to get me the Popsicle.
"What flavor would you like." Always the perfect hostess.
"Cherry." I answer. So off Betty went to get me a cherry Popsicle. Now, understand I had a needle in my arm, and you can't jest let a needle hand around and do nothing, so Jenny took out the chemo needle and inserted one of the saline syringes while we waited for Betty to come back. And wait… and wait…Jenny was forced to start using the second syringe with saline solution. And wait…and wait…
"ANY FLAVOR" I yell at the top of my lungs, and a few seconds Betty comes back with a tropical flavor Popsicle. I hate any thing tropical flavored, but I said thank you and started eating it. Jenny imminently switched from the saline solution to the chemo. As the treatment worn on Betty got up to visit some of the nurses.
"She is so nice" Jenny said indicating Betty "She always has a kind word to say, and she was generous at Christmas time." Am I supposed to give the staff gifts I wondered I was trying hard just not throwing-up on them. "Even when it was obvious that we couldn't save her husband she was still kind to us."
During my first chemo treatment I had noticed that at the ends of the room were areas that had beds instead of chairs, and they had hospital curtains also. I had wondered who used these areas. Sometimes there were people in the and sometimes not. Again Betty had come to my rescue with an expiation. Not everyone's treatment is a short two hours like mine (short?) some people had treatments that lasted all day. Betty had told me that as her husband's cancer got worse the chemo treatments got longer.
They would show up at the center early so that they could get one of the areas with a bed and curtain. Berry would bring a picnic basket and she would try to make the treatment as pleasant as possible. Sometimes her husband would sleep for a while during the treatment and she would walk in the mediation garden, it helped her a lot. I understood her much better after our day together, and I have never made fun a mediation since them.
The weirdest thing about that day was the fact that after going through the chemo treatment I was still the healthiest adult in my house, Mark was still sick. I made dinner for the girls, Mark and I stuck to water and saltines. I didn't want to be exposed to Mark's sick germs, and since he had been in our bed all day I decided to sleep in Leah's room. She moved to Ronnie’s room where I made them a tent out of a blanket and they both slept in sleeping bags on the floor, I told them to pretend that they were camping. I was so proud that I made it through the night with out throwing up.

Saturday, March 10, 2007

Wigged Out!: Chpt 30

About ten days after my first chemo treatment I had to go back to the cancer center for a blood test. This test told the staff how my body was healing and whether I would need additional medication. You know the stuff you see advertised on TV when some tire and sad looking person looks in to the camera and says…
"Chemo made me so tired that I couldn't do 'whatever' anymore, so I ask my doctor for…fill in the blank…miracle drug, and now I can do anything." Anyway I was feeling tired and I figured that they would put me on this stuff. I drove to the hospital and headed for the cancer center. After walking past the smokers and talkers I took the elevator to the second floor I didn't use the stairs because I was too tired. I then headed for the waiting room, just as I opened the door who should walk out but Beth and her mother. To refresh your memory these were the two women who were members of our first church and that Mark had run in hospital lobby one day when he was there to visit me. At that time Beth had told Mark that she had had a double mastectomy a few months earlier. So here she was walking out of the cancer treatment center while I was walking in.
"Hi" she said. I almost didn't recognize her because she looked so different. I remembered her with shoulder length, light brown hair, and today her hair or wig was short and dark red. She looked great, but she looked so different from how I remembered her, and I found myself staring at her wig instead of her eyes when we were talking. We filled each other in on how our respective treatments were going. We compared surgeries and recovery stories, she told me about her double mastectomy and implants. I told her all about my single mastectomy and the "joys" of the trans-flap surgery.
"I'm glad I had the implants." She says laughing. Then she told me that her treatment was going well, and that she had her last chemo treatment two weeks ago, today she was there for her blood test and a shot of that miracle drug. I found out that her husband was still a great guy and she was a grandmother. Twice. I wished her well-then walked into the office, happy to see her, but thinking about how different she looked in that red wig.
Eva tested my blood and told me that I was fine and I didn't need any additional medication.
"But I feel so tired!" I told her; she assured me that I was doing fine, “better that most.” She said. That statement made me feel real bad for the other patients. We schedule my next chemo treatment for the following week. I still wanted to change my chemo treatments to a Monday or Tuesday but they could only adjust my schedule for one day in either direction from a Thursday. I found out later why. In the book Straight talk about Breast Cancer it was explained that the way that chemo works (put here very simply) is that the cancer cells kind-of open and close. So when the chemo attacks opens cells it kills them, but if the cancer cell is closed than the chemo has no effect. So the chemo is given in cycles that follow the opening and closing cycle of the cancer cells. Or something like that, so sticking to a schedule is very important for killing all those pesky cancer cells.
Somehow, and I will never figure out why but I decided that I wanted to change my chemo treatments to Wednesdays. In reality this messed up the library schedule worse than going in on Thursdays did. Once again my co-workers came to my rescue by jumping in and covering for me without ever complaining. As I was about to leave Eva reminded me that sometime around the second treatment my hair would start falling out. Thanks.
From the moment that I was diagnosed with cancer I started getting interesting mail. The hospital (or someone) informed the American Cancer Society (ACS) about my condition and the ACS imminently contacted me both through the mail and with a phone call. Some woman called asking me how I was doing and did I need some help building a support base. I told her that I was dealing with everything fine and that my husband, friends and church were helping me a great deal and that although I appreciated the call, I didn't need any outside help. To their credit, they never called again, but the mail. I got catalogs for wigs and prosthesis, scarves and hats. I also received pamphlets of various kinds of treatments and information of local support groups. One of the letters I got was an invitation to come to a "Look good…Feel Better" seminar.
Although I had been invited to join two different Cancer support groups I had decided not to join either. I had three reasons for this. First; I didn't want to join a group because doing so felt like a long-term time consuming commitment and I didn't want that. I felt that I had lost enough time to my cancer treatments already. Second; the group at the hospital and the group at Dr. Sullivan's office met at times that were at the same time that I worked. I was told at work that I could change my hours, but I felt that my co-workers had rearranged their schedules enough for me. Third; and the main reason that I didn't join any group was because I was selfish, I never believed that I was going to die from the cancer, so I didn't want to join a group of women and become close to them only to watch some of them die. I just couldn't do it. I had formed a small circle of people who I could rely on, get close to and in theory none of them were going to die on me.
The "Look Good…Fell Better" seminar looked interesting, it was only a one night event and they would show me how to use make-up and wigs to look better during my chemo treatment and the letter said that participants would receive free make-up. Free stuff-sign me up.
On the appointment day I headed out for the seminar at the local chapter of the American Cancer Society. I was not sure what to expect, a few makeup tips maybe or a lesson on how to tie a scarf around my head in interesting ways. Before going to the seminar I had decided that I was not going to wear a wig, I felt that I would only wear hats and scarves.
I found the building with only a little difficulty, and went inside to find the room where the seminar was being held. The room was small with a long table down its center, A TV in one corner a few small tables lining the walls. There were sixteen of us; twelve cancer survivors, one leader and three observers (they were learning how to run other cancer seminars). The women ranged in age from their early twenties to the late fifties.
The woman leading the seminar was named Sandra, she was somewhere between her late thirties to early fifties, it was hard to tell, she had that look of someone who works in the beauty business. (You know blond-blond hair and lots of make-up) It turned out that she use to own a wig shop that’s how she got involved with the ACS in the first place. Recently she had sold her business, retired and now volunteers part-time for the ACS. I decide that she is a very nice woman, and really knew what she is talking about. The three observers were in the late twenties of early thirties, and they didn't say much. Then there were the rest of us.
Like I said we twelve were from our early twenties to late fifties. The group was a nice mix of Black, Spanish and Angelo. Ten of the women had their own hair, one wore a wig and the youngest of us wore a baseball cap.
Sandra was very interesting, she talked a little, then show us a video about 'How to chose a wig,' it was amazing how different each woman in the video looked with different kinds of wigs, it got me thinking. Then Sandra asked the woman who was wearing the wig if she could use her to demonstrated how to put on a wig. The woman named Lillian said "Sure." Then she moved to the chair at the head of the table, where she sat down than whipped off her wig.
"I'm ready!" she said. We all gasped and laughed at the same time. Lillian was a well put together woman, other than the fact that she was carrying an extra ten pounds, she looked perfect for her age. Her wig was stylish, her clothes stylish and expensive, her make-up perfect. I wasn't sure why she was here (maybe the free make-up). The only thing that wasn't perfect was her bald (kind of) head, there were still some clumps and whips of hair on it, so her head looked funny, she would have looked much better if she shaved her head (note to me, remember this).
Sandra told us a lot about hair, wigs and make-up it was a very informative evening. I even learned how to draw on natural looking eye browns. Eye browns? Nobody told me that I was going to loose my eyebrows. Every now and then Sandra would give us a short break, so we would stand up (there was not enough room for all of us to walk around) and chat, that’s when we learned the story of the young woman who was wearing a baseball cap.
It was April 2001 when Mandy, who was in her twenties, working full time and four weeks away from her wedding found a lump in one of her breast. She went to her doctor and discovered that she had breast cancer. She got married, went on her honeymoon, and then started her cancer treatments. I look at this bald, thin, very young woman and realized that she had only been married for four months.
Before I started my treatments I had been warned that the chemo would throw me into early menopause, instead of being sad about that fact I was thrilled at the thought of never having a period again. Of course the other stuff life thinning bones and hair and saggy looking skin I would deal with later (Hay, I know a good plastic surgeon). But Mandy was young, a newlywed who dreamed of having a family. And now thanks to modern medicine she could have a long life, but not children. I felt so sad for her, yet she seemed very up-beat about her future. Like the rest of us she was happy just to have a future. The seminar ended, we took our bag of make-up (some really good stuff) hung out in the parking lot and chatted for a while then went home.
Whether its explaining the rules of baseball, the facts of life or the realities of a mother with cancer it takes more then one big talk to explain all the facts to your children. It is more like a continual flow of information, the asking and answering of questions. You don't sit them down once, hem and haw, say a few words then walk away thinking that they've got it. First you tell them that you have cancer, then try to relieve their fears while you try to hide your own.
Then you tell them that you have to have surgery, and it is going to be ok, but you have to go to the hospital a little while. After you come home looking and feeling really bad, you start to heal, then things starting going back to normal when you tell them that the next step is chemotherapy. That’s harder to explain that the surgery. How do you explain to you children that once every three weeks that you have to go to the hospital for a few hours, let a somewhat stranger stick you with a needle and fill your body with poison. How do you explain it to yourself? When it came to discussing the chemo treatments I made two big mistakes.
The first was the day that I came home from work with a large box of scarves that Caroline had loaned me. Good scarves are expensive and cheap scarves look like well-like cheap scarves. I felt that I was very lucky to have a co-worker and friend who had a very nice collection that she was willing to loan me for as long as I need them. Anyway, Leah was at the door to greet me when I brought home the box of scarves.
Leah loves anything to do with clothes, she has a better wardrobe and more shoes than I do. This is a child that decided at the age of 5 that she wanted to be a fashion designer when she grows up. While Ronnie had set the goal of going to Princeton, Leah’s goal is to attend The Fashion Institute of Technology. When Leah found out that I have a degree from there (I have an associates in Fashion, Buying and Merchandising) I became a much cooler mom in her eyes.
Anyway she was thrilled when she saw all the scarves and wanted to play with them, which met dressing-up all her dolls. I explained that the scarves were for me, that I would need them when my hair started fall out.
"Your hair what?" and she started to cry.
"That was a lousy way to tell you child that you are going to be bald". I thought to myself. I realized how badly I had handled the conversation. I held her in my arms and tried to explain that the chemo would make my hair fall out, but only for a while, and then my hair would grow back again. The child was near hysteria, it took me a long time to clam her down. Then second mistake was I didn't follow up this discussion by giving Ronnie the same information. A few weeks later in the middle of a fight with sister Ronnie came running into my room screaming.
"MOMMY, MOMMY LEAH SAIDS THAT YOU ARE GOING TO BE BALD. TELL HER TO STOP LIEING MOM!" I sat on the bed patting a space next to me indicating that I wanted her to sit. I put my arms around her and say.
"Honey, Mommy has something to tell you…"
Going bald was never a big concern for me, I have basically lived with the philosophy that anything temporary is tolerable. I have met women and read about others, who were tempted not to have chemo because they didn't want to go bald. How silly, I don't know about them, but I have always had a love/hate relationship with my hair. I thought of few months of baldness might be interesting. After all, how many times have I been standing in front of a mirror brush in hand fighting with my hair, and loosing and thinking.
"Why don't I just shave off all of my hair and buy a wig that will look just the way that I want it too." So I thought that I would handle the loosing of my hair very nonchalant. Wrong.
The first thing that I realize was that it would be easier to see my hair fall out if it were short. Let me tell you a little about my hair. First of all I like it long, as a teenager in the 70's I was blesses with long straight blond hair with a natural part in the middle. And that was great as long as long, straight hair that was parted in the middle was in style, but alas styles change. Parts on the side came and went fashion wise, but any time I tried to part my hair on its side my hair rebelled by going every which way and making me look stupid. So I learned that I had to leave it parted in the middle, sometimes with bangs, some times with out. Did I mention that my hair was straight? Hair-curlers, curling irons, moose and perms, I’ve tried everything. I can get my hair to curl…for a while, then it goes straight again.
I heard that hair sometimes changes as a person grows older, but the only change that my hair did was get darker, first I notice a slight change here and there, and then I got pregnant. The slight darkening became quick darkening, so by the time Leah was born I could no longer call myself a blond.
Evan though I live in a neighborhood where most of the women have standing appointments with their hair-dressers, being the rebel that I am, I was happy with my long light brown hair-usually in a pony tail.
That was about to change, my hair was starting to fall out and I learned at the seminar that cutting my hair short would make loosing it easier, both mentally and physically. So off to the hair-dressers I went. Being cheap I went to a barber shop in town that chargers $16.00 per hair male/female/adult/child. It is run by an old immigrant couple that offers a no-frill hair-cut in a very frilly town. How do they do it? Easy, the shop is very small only two chairs and two mirrors. There is no reception deck and no appointments. You walk in sit on the long bench that sits along the wall and wait your turn. There are no sinks (which is good for me, because I hate having my hair washed in a salon), no hair-dryers, no colorist, no manicurist and a décor that has not been up-dated since the 1940’s. The couple does not speak English well (he speaks it better than she does) but boy, can they cut hair.
I discovered them a few years ago and take the girls there whenever they need a hair-cut. The woman always does the hair of any female that comes into the shop, but they both cut the hair any man who comes into the shop, after all men are their primary customers. So it was to this shop that I went to get my long tresses cut short. I walk in with my hair in a pony-tail than started at the based of my neck. My intent was to have the woman start with one big cut so that I could have my pony-tail as a keep sake, just like the ones that I have of each of my daughter's first hair-cuts, but we had a little communication problem.
The women's English was good enough for me to tell her that I wanted my hair cut short. It just was not good enough for her to understand I am having chemo and I am about to looses all of my hair, so I want to have my ponytail for a souvenir. She took my hair out of the pony-tail and started cutting a little bit at a time, I wanted to cry. As a matter of fact I think that I did. Anyway she finished cutting my hair, then I got off the chair and garbed a hand full my hair off the floor. I think that the woman must have thought that I was nuts. Maybe I was.
O.K. after thinking about it for a long time I decided to by a wig, but I didn't want to go shopping alone. Mark is good at many things, but shopping is not one of them, I learned very early in our marriage that for us to stay happily married we don't shop together with the exception of maybe Home Depot. So I asked Alex to go with me. I had my list of wig shops in the area from my "Look Good…Feel Better" seminar, Alex and I decide to go the easy route and visit the wig and cosmetic store that is located in the Hospital (yes, they have their own store). We drove to the hospital and hunt for the store, and guess what? The store was closed Mondays we went there on a Monday. Rats. We checked the list for another store. Looking at the list, Alex saw a store located right down the street from her favorite Portuguese Restaurant and she know where there was cheap parking in that neighborhood. Sure sounds like a logical reason to chose a store to me.
We find Alex's secret parking spot and walk toward the store, we heard three or four different languages spoken just on the walk from the parking lot to the wig shop. We checked the address and locate the shop and walk in. Our hearts sank, the place was not a wig shop but a beauty shop and it looked like a disorganized dump. We didn't see anyone, not an employee or customer in sight. The shelves were well stocked, but nothing was labeled it looked like items were tossed on the shelves helter-skelter. We saw a few broken mannequin heads with cheap green, orange or purple wigs on them. We were shocked, and we wondered how this store got on the American Cancer Society's approved wig shop list. Without saying a word Alex and I turned to the exit when two African-American teenaged girls walk in. Suddenly an African-American man about forty, and dressed casually stood-up behind the counter, we hadn't notice him. The girls walked up to the counter and addressed him by name, then asked him for some product that I had never heard of. I figured that he would be spending the next hour just looking for the item.
"Second shelve from the top, five items over." He said pointing to his left. The girls walked over to that spot and there was the item they wanted. I was amazed; I gave the place a second look. It was then that I realized that I was use to shopping in corporate stores where everything was lined up in perfect order. This was a privately owned shop where the owner had his own way of doing things, the place looked like a mess to me, but it was obvious that this man knew where every item in the store was located. I was impress, but that didn't help me find a wig, so again Alex and I headed out the door when an well dresses African-American woman who looked somewhere in her thirties walked up to us and asked.
"Can I help you?" I held up the paper with the list of wig shops on it and said.
"I was looking for a wig."
"Follow me." She headed for an open door in the wall that I hadn't notice before, we went through the door and stepped down a step. We entered a wig shop, a real wig shop. It was beautifully organized, there were close to fifty mannequins heads each wearing an expensive wig. Every color, cut, and length was there, it was a bald woman's paradise.
"Have a seat." She said pointing to four conformable looking chairs sitting in the middle of the room "I'm Yvonne." Alex and I headed for the chairs, one of us must have looked at the door and then looked at her with a confused expression on their face because Yvonne looked at the door also.
"My husband and I have different business styles, but they both must be working, because we've been in business for over twenty years." Twenty years? Obviously she was older than I had thought.
"You can't argue with success" Alex said to keep the conversation going. This made Yvonne smile.
It had now been about three weeks since my first chemo treatment and just like Eva had said, my hair was falling out, fast. Yvonne put a tan skull-cap over my head and then selected a wig from her collection, placed it on my head, then styled it. The wig was similar to my own hair (or what was left of it) in length and color. It looked nice but I wanted to try different looks.
First Alex picked out a wig for me to try on, and then I pick one. It is interesting that each of us select a different cut and color for me to try on, each of us saw me differently. We were having a lot of fun, I hadn’t laughed that had in a long time. At one point I watch Alex who was at the other end of the shop, taking a blond wig off a mannequin for me to try on. I was not looking in the mirror at the wig that Yvonne was putting on my head; she styles it then walked to another area in the shop to help another woman who has just walked in. Alex turned from the mannequin and started walking back to where I was sitting, she was staring at me strangely.
"What?" I ask her as she slowly approaches me, never taking her eyes off my head.
"Look" she said as she pointed to the mirror in front of me. I was amazed at the woman that I saw staring back at me. That woman had beautiful hair, it was dark blond, with expensive highlights, the cut was exquisite. She looked so sophisticated, like she should be drinking a mint-julip at the Yacht Club or heading out for a day at her stables. I was standing there looking spell-bound into the mirror seeing myself as I have never seen myself before when my thoughts are broken by the sound of Alex's Brooklyn accent saying…
"…Too top of the mountain for you!" (top of the mountain is an expression that we use in referring to the RICH people who live in our town) we burst out laughing standing there in our jeans and tee shirts, pointing at the imposter in the mirror. Yvonne has given-up on us and told us to call her if we needed her.
I tried on a few more wigs, I found one that was my fantasy hair, it is not-quite to my shoulders, dark red and slightly curly, hesitantly I put it on, after the 'top of the mountain' wig I was gun shy. It looked great, fun, even sexy. I love it, Alex loved it even Yvonne who had rejoined us approved. Then I start thinking about seeing Beth and her red wig, it looked soooo, un-natural, soooo wrong. I took the wig off, then tried on a short light brown boring wig with slight red highlights. It said unassuming suburban house wife-I bought it. I am what I am.

Friday, March 09, 2007

Chemo Angles: Chpt 29

Between my cancer and 9/11 my children were under a lot of stress. So Mark and I decided that instead of a babysitter picking them up from school and staying with them while he took me to my first chemo treatment, that he would get them at school and I would have a friend take me to the hospital. So I asked my co-worker and good friend Alison to take me.
I didn’t know what was in store for me at the chemo center so I needed someone there that I could depend on. Someone who was mentally strong and would be able to help me get through whatever it was that was going to happen, the first name that came to mind was Alison.
Alison, Alison, Alison, how do I describe Alison, a woman who stands a little over 5feet tall and is a bundle of energy. She is a talented artist, with an artist's soul. She has a slight southern accent, a dazzling smile and a kind word for everyone. Because of her height (or lack of it) people sometimes try to take advantage of her, and that is always a big mistake. Alison is the mother of three teenage boys, so she has been there and seen that, anyone who thinks that they can get one over on her is mistaken.
One time when we was only the two of us working in the library, we heard a loud thump or two on the wall behind us. I couldn’t figure out what the noise was, but Alison knew. The room behind us was the men’s bathroom and the noise was the sound of bodies hitting the wall. There was a fight going on in the men’s room and I didn’t know what to…Alison did. She marched over to the men’s room door and starting banging on it yelling.
“WHAT’S GOING ON IN THERE?” The fighting stopped.
“ NOTHING!!!” Someone yelled. Then the two teenage boys came out of the men’s room and quickly left the library. Problem solved, I was impressed. I needed someone like this who was quick thinking to help me through my first treatment.
We drove to the hospital and park the car where I usually park, Alison didn’t want me to walk the distance between the parking lot and the cancer center, but I told her that I enjoyed the walk. Anyway I wanted to show her how funny the hospital entrance was. The entrance is set on a circular driveway, with a constant flow of cars picking up and dropping off people. The thing that always struck me funny me was how the front of the hospital was always littered with people standing around doing one of two things; Smoking or talking on a cell phone. Neither activity is permitted in the hospital, so the main entrance (and many other doors) had all theses people standing around smoking and/or talking. I found it funny to see so many people smoking at the entrance of a hospital. I must not have been the only person who noticed all those smokers because sometime in the year 2002 the hospital made the front of the hospital a “NO SMOKING” zone. Now if they could do something about those cell phones.
I had asked Alison if she would mind staying in the waiting room while I had my treatment? I didn’t know what was going to happen or how I was going to react, and I didn’t want Alison to see me acting like a baby. I also didn’t want to be in the position of having to entertain her. Alison said that she was ok with that, being a librarian she brought a book. I checked in and we hung out briefly before I was called. It was nice to have someone there with me I enjoyed the company.
They took some blood then sent me to the treatment room. Alison went to the treatment room with me to help get me settled. Eva greeted us as we walked in to the room and she guided us to the other side of the nurse’s station, the part of the room that I couldn’t see on my first visit. It was an interesting sight; there was a row of blue chairs along a long wall of windows. The room was bright and the chairs look convertible. Eva told me to sit wherever I wanted. I noticed that there was a TV at each end of the row of chairs; both TV’s were showing news programs. I really didn’t want to watch 9/11 coverage while I was having poison put into my body. I chose a chair in the middle of the row.
Alison sat across from me. I sat there kind-of dumb struck while Alison was making friends with the people on each side of me. To my left was an older man getting chemo, he looked like he was sleeping, his wife was sitting next to him knitting. On my right was a man about my age, he was reading a book. Alison said hi to each of them (did I mention that Alison was very friendly), the guy to my left was too tired to talk, he just gave a kind-of wave. But the guy to my right was very chatty. It was amazing to watch them, she asked the guy what kind a cancer he had and how was his treatment going. He started telling her his whole cancer story.
Alison is a great listener, and she knows which questions to ask, then actually listens to the answer, she should have been a reporter. Anyway the man told us that he had bone cancer, and the he had been in and out of the hospital for the last year. His cancer was so bad that he had to stay in the hospital while they gave him his first chemo treatments. The treatment was the 24/7 kind for I forgot how many days he said he was in the hospital. It sounded terrible, he said it was, but he though that the worst was over, until today.
He still needed out-patient chemo treatments like I was getting, the problem was…the type of chemo he needed was flown in everyday from Florida and all the planes were still grounded. So the nurses were giving him some substitute treatment until the planes were flying again. It strange, you would think living in a small town in New Jersey that a terrorist attack in New York City would little if no effect on you, yet it did. The world is so inter-connected that when something happens in one place it affects the strangest things in another place.
Eva came back caring two needles, a small one with a shunt type thing and a huge needle (about six inches long) and Alison and I knew that it was time for her to leave…I wish that I was going with her. That first think Eva did was look for a vein, she told me that it was very important that she find the right one because if my vein burst while there is chemo in it, my arm would feel like it was burning and it would be very painful. I told her to take her time.
As Eva looked for a vein she said…
“Yes, why do you ask?”
“When a person is nervous the veins contract, you are making my job harder.” She said with a smile in her voice.
“Sorry.” It took a while but she finally was able to get the shunt placed in my vein properly. The shunt is the same thing that is put into your hand when you are in the hospital so that you can be hooked up to the IV bottle, and different liquids can be injected in to you body with out you having to get a new shot each time. Next Eva hooked up the huge needle to the shunt and then put the needle in for the lack of a better word I call it a little machine. It was wild; the machine pushed the non-sharp end of the needle so that there was a constant amount of liquid entering my vein. It was cool to watch.
“That liquid entering your body is a combination of steroids and anti-vomit medicine. The machine will beep when you are done or if something comes unhooked, I’ll be back in a few minutes.” It didn’t hurt, in fact I didn’t feel anything, so with my one good hand I put my headset on and turned on my tape player to listen to Martin Cruse Smith’s “Havana Bay”. Arkady Renko has left the cold of Moscow for hot sun and Spanish rhythms of Cuba when an old friend is found dead… The tape ended and I tried to replace it with the next tape but I couldn’t get the second tape out of the box with only one hand. I was about to give up with the wife of the sleeping patient next to me came over and helped me switch the tapes, then she went back to her knitting and I went back to Cuba. …The heat of the sun, the sent of the sea and Arkady meets a beautiful policewoman who will help him with his investigation. Another murder…a secret meeting and …Beep …Beep…Beep…The machine stopped pushing, the needle was empty. Eva came walking over holding four or five syringes of various sizes.
“I didn’t bring all the needles over at once because I didn’t want to scare you.”
“Well, you’re scaring me now.” I said staring at all the needles in her hand, if I wasn’t strapped down I would have been running out the door. Eva sat down in front of me, placing all the syringes on a small tray, she then removed the needle filled with the steroids from the little machine and disconnected it from my shunt.
“Now comes the fun part.” She said “I will inject the chemo in to you myself.”
Unlike the steroids that can be steadily administered by an IV type machine, the chemo needs a thinking person behind the injection. Eva explained that the large needle that was filled with red liquid was the actual chemotherapy and it had to be administered slowly. If it was injected too fast the vain could burst or could be damaged so it was important that we worked as a team, she slowly injecting the chemo and I telling her if it start to burn (which it did sometimes).
“Before we start this, what kind of Popsicle would you like?” I know that asking about Popsicle’s at a time like this may seem strange, but there really is a medical reason for the question. Studies have found that eating a Popsicle during a chemo session will reduce mouth sores. Really.
“Red” I said “I like red popsicle’s.” After Eva injected some of the chemo she would remove the needle from the shunt, then inject some of the clear liquid that was in one of the many smaller syringes. This was some kind of saline solution that was designed to help the move the chemo along in the veins. So a little red liquid, then a little clear liquid back and forth…back and forth… this process took about a hour, so we spent that time talking. We chatted a little bit about the history of chemotherapy.
“I read somewhere” My most frequent opening line “that modern chemotherapy was discovered after a ship was sunk during WWII.”
“Your right” she said giving me a smile. “Not many people know that.”
The origin of chemotherapy can be traced back to December 2, 1943. It was on this date that the "Tragedy of Bari, Italy" accrued. According to www.history.mil.com it was on this date that the Germans attacked Bari where British and American ships were anchored. By the time the raid ended 17 ships were sunk and six damaged. What dose WWII ships have to do with chemo? Plenty.
One of those ships was "The John Harvey" whose cargo was mustard gas. The Allies wanted the gas in Europe to use-if-the Germans used the gas first. Poisonous gas was first used in modern warfare by the Germans during WWI. The Germans started in 1915 with a chlorine gas, then they invented mustard gas. These chemicals were horrible weapons and the Allies were only going to use them in 1943 if the Germans used them first.
Anyway, when the John Harvey sunk most of "gas" was blown off-shore. But some of the "gas" was held in solution oil form, which floated on the water exposing many of the men to this, liquid from of the mustard gas. Of the 800 casualties hospitalized that day 628 of the men suffered from exposure to the mustard gas, with 69 of the deaths blamed whole or part of being exposed to the gas. Thats right-the weapon that were going to use on the Germans ended up killing Brits and Americans sailors.
Now this would have just been another deadly battle of a deadly war except when the exposed servicemen were being treated in the hospital someone noticed these men showed marrow and lymphatic suppression, what ever that is-and this suppression stuff caught the attention of some guys at Yale. Now, according to www.lymphomainfo.net/hodgkins/timeline.html a mustard gas derivative called nitrogen mustard was submitted by some guys named Good and Gilman for treatment for Hodgkin's disease and lymphosarcoma. Up to this point chemotherapy was something called "The Fowler's solution" which was arsenic containing medicinal. By 1947 my lymphomainfo web suite said "Alpert and Petersen published results of Nitrogen Mustard showing sticking dissolution of tumor masses in patients with Hodgkin's Disease and lymphosarcoma." And the rest is history-I love knowing stuff like that.
Back at the chemo center Eva and I told each other funny stories about our kids, she made me laugh all while gently injecting first the red, then the clear. As we talked I found myself looking at all the angles pins that were pined on her lab coat, there must have been over twenty. I remembered that one time when a Lab Tech was taking my blood one of the chemo nurses came into the room and the Tech started teasing the nurses about all the pins she was wearing.
“I have to wear them all” she said laughing “because the pins are gifts from patients, and if one of them see me not wearing the gift that they gave me they might get offended.”
Angles, the patients gave them gifts of angel pins, not pink ribbons, not funny medical symbol pins, but angel pins. Pins of every size, color and shape. Happy angels, sad angels, flying angels, standing angels, praying angels. When a patient looks at these women, they see angels, and why not. These nurses did the dirty work; they injected poison into your body, hoping to give you life. They hold your hand, calm your fears and just listen to you babble. There is a special place in heaven for these women and the patients knew it.
After Eva finished injected the last of the chemo, she put another large needle with more clear liquid back in to my hand and the little machine.
“More steroids.” She said. Then she was gone. I returned to my book on tape while waiting for the process to end. From beginning to end the whole process took about 2 hours. Eva came back she asked if I felt like I had to sneeze, Funny thing was I did. She told me that that was a normal feeling right after chemo, then she gave me some pills, more anti-vomit medication and sent me on my way. Alison got me home and I thanked her again for being there for me.
“How was it?” My husband asked.
“Not bad.” I answered, then I told him the details about what had happened. Much to my surprised I was feeling pretty good, so Mark suggested that we got out to dinner. Eva had said that there 'were no dietary restriction,' so I could eat what ever I wanted. The kids wanted to go to their favorite restaurant Friendy's, so off we went.
We don't go out to eat very often, so it is always a treat when we do. I always find it funny when I read some magazine article which is written to help the reader "Reduce their spending" because one of the first things the article always tells you is to reduce your dinners out to one or two a week. ONE OR TWO A WEEK! Who are these writers anyway? We go out to dinner once or twice a month.
We love the food at Friendy's-almost everything is deep fried I can hear my arteries harden while I munch on the tasty French fries. Mark and I have learned over the years that if we want to leave the restaurant not feeling bloated that we should share a meal and only eat a small ice cream. Knowing the right thing to do and doing the right thing are two different things. I was feeling really hungry when we arrived at the restaurant, more hungry than usual.
"LOOK" Mark said "They are having a special on fajitas, they look good." And they did. I though that he was going to order the fajitas so I thought that I would also. I ordered first, they he ordered something smaller and more sensible, but I really wanted those fajitas. The food came, the girls ate their chicken fingers, Mark had his hamburger and I devoured my fajitas. "I have never seen you eat so much food!"
"Really?" I said stuffing more food into my mouth, then I ordered dessert.
Around 7:30pm I started to feel nauseous, I was not supposed to take my anti-vomit medicine for another half hour. I took it anyway. By 8:00 I was feeling worse, so I went to bed, leaving Mark to take care of the girls.
While I was going through all this it was easy to feel sorry for myself, but I realized just how luck I was. I had a husband that took over the care of our children and/or the house anytime that I needed it. I was able to crawl into bed anytime that I wanted to and my husband would drop what ever he was doing in order to take care of his family, as long as the sermon got done, every thing else could wait. We were lucky that both his boss and the congregation not only back his decision to put us first, but helped us in anyway that they could.
One time while I was in the cancer waiting room I read an article in the magazine ‘Cancer Today’ or some title like that. Anyway the article was by a single woman who was dealing with the cancer treatment. She was married when she was diagnosed but she was single now. She said something like it was sad how many men left their wives when the woman found out that she had cancer. To paraphrase her “The husbands left with the health insurance, but left the women with the children.” The article just reinforced just what a good husband I had.
So, as sick as I was feeling, I knew that I could focus on myself. By 9:00pm I was vomiting over and over again. Mark looked so sad to know that there was not a thing that he could do to help me. It became to much work getting in and out of our bed every time that I threw up so I brought a blanket and pillow and lied down in the hall just outside of the bathroom (the bathroom was too small to lied down in). I threw up over and over again, remember I had a huge dinner and it was all coming up. This went on all night. I finally crawled back in to bed around 5:00 am.
I was scheduled to work on Saturday the 16th, nobody including me was sure how much work I could handle, I lasted only a few hours. This was the first day that I wore the gloves to work. My co-workers knew why I was wearing them but none of the patrons did. Here is where a reputation of being slightly eccentric comes in handy, some people looked at me a little strange, but most just accepted my wearing gloves without a thought. I was surprised to see how dirty the gloves were after working for only a few hours, I would have to wash them before I could wear them again. This only reinforced my decision to wear them in the first place.

I had been warned that the worst day would be the third day after the chemo treatment, It was, except for that throwing up part. I felt like I had not sleep in ten years. The girls and I skipped church and I stayed in bed all day.
I spent the rest of the week getting my strength back, I worked my normal hours On Saturday the church has their "First Annual Rummage Sale" (we are having a lot of firsts at the church this year. Mostly it consists of church members cleaning out their attic and basements but we have managed to attract some real venders. We also are having a bake sale if there is anything that Methodist cane do well is cook, the cup cakes and cooking look delicious, to bad the mer thought of a cupcake makes me want to throw-up.
Not only did I bake some great looking cupcakes (chocolate filling, white frosting and each decorated with a single colorful M&M, they were a big hit). But we had a table of our own. It was fun, I sat in the shade most of the time hocking my wears. Mark spent most of the time wandering from table to table doing that Pastor thing that he does so well. It was also good for the Church members to see me out of the house, smiling and not looking various shades of green. Remember I didn't go to church last Sunday, and as Mark and I would learn, if I don't go to church everyone thinks something terrible has happened to me, they worry so. One of the Church members gets elected to find out how I am and the report it back to the rest of the church members. They were so upset last week that Mark I decided that no mater how bad I feel I have to go to church so the congregation won't worry so much. It is wonderful to have so many people looking after me, but it is also a burden.
The strangest thing about having cancer and telling people about it is that you become the center of attention. Being notice is something many people strive for, whether it's local fame or international fame and I have always wonder why. I wonder even more now. At first it was kind of cool having all the cards sent to me, I felt very loved. Then I found that whenever I entered a room people would come over to me to ask how I was doing, and what was next in my treatment schedule. Even the ladies that I met every day at the middle school when I pick up Ronnie would stop their conversations as soon as I join the group and all of them become focused on me. I am not used to being the center of attention I found it unsettling. Being one of four children you get use to being part of a group, not a stand alone individual.
I find myself feeling frighten sometimes, all these people telling me how strong that I am, and that they could never handle the cancer as bravely as I am.
"You have no choice" I tell them, "You do what is necessary to survive."
"No, no" they tell me "I could never go through what you are going through, and handle it so graciously." I just give them an "Ahaw shucks" look and try to change the subject. They don't see me when I am alone. They don't see me when I get so depressed that I that I become almost comatose, or when find myself crying suddenly. They don't see me when I get so angry that I throw things at my walls or hold a pillow over my face and scream in to it. I am not brave, yet I feel that everyone wants me to be brave for them, I can't always do it, some days I allow myself to fall apart just a little in front of people, but most of the time I try to make jokes about my treatment. I feel this weird need to perform for my audience. With the exception of my wedding day when I got to play 'The Bride' I have never been the focus of so many people. Every cough, every sneeze and it…
"Are you ok?" or "Do you need to sit down" I go from liking it to hating it. For the first time I understand why people who get sudden fame crash and burn so often. Sometimes I'll ask Mark to run some of my errands just because I don't want to talk to anyone that I might run in to. I want my friend's help, I need my friend's help, but sometimes all these people around me gets to be too much.

Tuesday, March 06, 2007

It Was A Beautiful Day: Chpt 28

D-day: decision day. At 4:40pm in the afternoon I was scheduled to see my oncologist and tell her what kind of chemo I would take. I had read as much as I could on the subject, and it has been a long hard decision. Along with the chemo decision I have to make, I also had to decide whether or not I wanted a port, I decided that I didn't want one. A port is this thing that is surgically implanted into your body for the nurse to inject the chemotherapy needle into instead of stabbing you in the arm with a needle each time you got a treatment. I know that the port is better for your veins, but I was concerned that it would give me another scar, and I didn’t want anymore scars.
Another reason for not wanting a port is fear. I had mentioned that our Church sexton's wife also had breast cancer, hers was worse than mine. I was talking to the sexton one day and he told me that his wife was back in the hospital.
“Her port collapsed and she had to have it surgically removed.” I was not sure how a port could collapse but it sounded scary to me. I decided that I would tell Dr. O’Brian that I didn’t want the port and I would not let her talk me into getting one…with out a fight.
Between the start of school and all my doctor visits, the past few weeks had been very stressful. Although I have tried to be up-beat I didn't always succeed. I was in a lot of pain, almost every inch of my body hurt except the parts that were still numb, and I was grossed-up by the puss was that coming out of my navel. I was tired all the time and I was terrified of my impending chemo treatments. I found myself being infected with the "why-me syndrome", and I was feeling sorry for my-self more and more often. I frequently felt that there was no one in the world-who had it worse-off than I did. It hurt Diane to see my so down, so to cheer my up invited me to breakfast.
Diane's wanted to distract me for a while and to get me thinking of something other than doctor’s appointment and chemo treatments. She had a 'buy one breakfast and get one free' coupon for the local Friendly’s that was about to expire so that is where we decided to go for breakfast. The plan was that after we drop off our kids at school that she would pick me up and we will go to Friendly’s. As I got into her car she stopped and looked at the sky then remarked,
“Isn’t it a beautiful day?” I had to agree with her that it was. It had been a long hot summer and even though the sun was shinning and there wasn't a cloud in the sky the temperature was cool and day perfect. The sunshine and the thought of my impending big calorie, fat soaked breakfast-brighten my mood also.
We got to Friendly’s and ordered our breakfast. We ordered way too much food, when our meals arrived we said that we would each eat only half of our meal. Wrong. Diane kept making me laugh as we both ate; she was doing a great job improving my mood. I was finally starting to feel more relaxed, maybe, just maybe I would feel better before my doctors visit. We were trying to figure out the tip when a waitress-who was standing at the cash register, cashier shouted:
“A PLAN JUST FLEW INTO THE WORLD TRADE CENTER!!!” The restaurant went silent as we all just looked at each other in disbelief. I immediately thought about the time in the mid 1940’s when a small airforce plane flew into the Empire State building, killing the pilot and some office workers. There were so many tragic things accruing during WWII that many people have forgotten about this crash.
I knew about the incident because of a story that my father told me as a child. It was toward the end of the war and he as was training to be a B-25 bomber pilot. Edward and his crew were scheduled to fly a training mission from the Carolina’s to New York, he wrote to his parents about the flight and he told them that he intended to fly a circle around the Empire State building. Well, the training mission was canceled and he didn’t think a thing out it until, as he put it:
“I was walking down the street when I saw the headline on all the newspapers at a newsstand saying something like “PLANE CRASHES IN TO EMPIRE STATE BUILDING’ I ran to the nearest phone booth to call my parents and let them know that I was all right.” So, when the waitress starting yelling about a plan crashing into the World Trade Center I though that a small plane had veered off course and hit the tall building. Diane and continued to calculate the tip when the same woman started screaming:
MY DAUGHTER WORKS THERE, MY DAUGHTER WORKS THERE” Then promptly fainted. One of the other waitresses caught her enough to break the fall. Figuring that at this moment that the amount of the tip was unimportant, one of us threw down a five-dollar bill and Diane and I hopped in to her car and raced to my house.
We ran into my house calling to Mark, I figured that he didn’t know what had happened because he doesn't tend to have the TV on in the morning. As I called upstairs to him he came running down the steps telling me about the attack thinking that I didn’t know.
The three of us sat on the couch watching CNN, we were mesmerized, together, yet alone, each one of us was lost in our own thoughts. Looking around the room I noticed that my house was a mess, cleaning hadn’t been a high priority that week. The events that were unfolding gave me a lot of nervous energy, so I started to pick up the toys. Watching me start to clean Diane commented,
“You don’t have to clean on my account.”
“I’m not” I answered, “I just need to do something.” I continued to pick up stuff animals and toss them in to the toy box.
“Me too” she said as she started picking up crayons. Soon the three of us were cleaning, rearranging, sorting, dusting, etc as we watched CNN.
Eventually the minister in Mark kicked in and he started the think about his parishioners, who do we know that works on Wall Street. Only one name came to mind Paul, Mark called Paul’s wife Lindsay. She told Mark that Paul called her right after the planes hit and told her that he was OK, we felt better because Lindsay just had a baby a few months ago and was still battling post-partum-depression, we didn’t think that she couldn’t handle anything else.
I made coffee, it sat un-drunk on the sparkling coffee table. At noon Diane left because she was scheduled to volunteer for lunch duty at the elementary school, she was also anxious to see her first grader, and hold him I’d imagine. A few minutes later the phone rang, it was someone from the elementary school calling. They wanted to make sure that there would be someone home to pick up my second grader; I told her that I would be there. I was impressed, there must have been some kind of emergency system in place because each parent or guardian of all six hundred students were called. They wanted to make sure that not one child got off the bus or walked home, only to find that no one was waiting for them. Someone also quickly gathered volunteers at the school to set up a pizza party for children whose parents could not be found. How many were we going to loose. Even though we were over an hour and a half commute to Manhattan, there are many local residents who work in New York City.
Once we get settled again, Mark got a call-there was an emergency meeting of all the local clergy, he went upstairs to get dressed for the meeting, then left the house. Now I was alone watching CNN, in the last few hours I had been on an emotional roller-coaster ride. I had gone form sad to happy to shocked to frightened to angry. How dare they, I mean how dare they do this. How dare they kill so many innocent people? And for what? I thought about the many people who just like me were fighting one kind of disease or another going through painful treatments so that we might live a few more years, then these idiots highjack a plane and crash it in to a building killing thousands. The victims didn't have a chance, there weren't even giving the opportunity to fight for their lives, it was not fair. For the next few hours I focused on a real tragedy, and stopped thinking about myself.
I was anxious to see my girls, so I went to the Middle School early to pick up Ronnie and to get some comfort from my friends. Most of the kids ride the buses some are driven by their parents and a few walk, so there usually is a standard amount of cars waiting for their kids every day. Not today, the parking area was overflowing with parents that needed to get their kids in their arms as soon as possible. We stood around shocked, and wait…and talk. The conversations were focus on the WTC, as I walked from my car to my friends I heard bits and pieces of them.
“My sister works there…off today, her daughters class trip”
“…caught in traffic…”
“A breakfast meeting.”
“My neighbors were on vacation this week, both work on wall street” and so on. I reached my friends as Alex was telling them about her workaholic brother.
“This guy never, never takes time off… except for today, he took one look at the beautiful sky this morning and decided to go fishing.” How weird that so many local residents just happened to take the day off. The illusion was growing in my mind that the town really was special it seemed un-touched by the real world.

Once we all got home and we were able to sit down and talk. Trying to explain what had happened, what was happening, yet trying not to frighten them too much, I found it harder then trying to explain my cancer. These poor kids, they have spent the whole summer thinking that their mother was going to die, and just as things were starting to look better for them the world goes mad. I had called earlier to check if my doctors appointment had been canceled, it hadn’t. I hated to leave them but I had to go. My fear of the chemo was gone I just wanted the appointment over so I could get back to my family. Just before I left the phone rang again, it was Lindsay, she was crying because she has not heard from her husband since the second buildings collapsed.
It took longer to find a parking space, I don’t known why this surprised me but it did. There were more people in the waiting room then usual this also surprised me. There was a loud guy in the waiting room causing trouble; he kept yelling that he needed to see his doctor.
“I WANT TO SEE DR. O’BRAIN…NOW!!!” An employee came out to the waiting room to speak to him and calm him down. Oh-boy, I realized that I was in for a long wait, I picked up my book. Surprisingly a few minutes later I was brought in to the lab section and had my blood drawn, then Dr O’Brian came to get me. For the first time since I had met her she looked frazzled, she didn’t zip around the place like normal, she walked at a normal pace, and she looked like she had been mentally beaten up all day-she probable had.
We sat in her office when Sally-one of the clerical workers interrupted. The man was still yelling, what were they going to do. As they spoke I focused on my hands (I thought that reading my book would be rude) I notice for the second time that week that my fingernails looked great, all ten were long, filed and polished. Considering that I bit my nails until I was thirty, this was a major accomplishment.
I had mention my nails to Mark earlier that week and he said;
“Of course your nails look great, you’re not doing anything.”
“What do you mean I an not doing anything.”
“ You have been resting, you are not working, not washing dishes, or doing laundry, or scrubbing pans or floors, I am doing all the cleaning. So of course you nails should look good.” He said.
“ I do a little cleaning” I protested.
“HA” I think was his retort. He was right, while the rest of my body was recuperating, my hands were being treated like princesses.
I looked up from my hands to the scene being played out in front of me. Dr. O shook her head, and muttered that she had been trying to get the man to make an appointment to see her for months, but to day he decides to show up. After Sally left, Dr. O’Brian turned to me and asked;
“So what did you decide?” Remember this woman never wastes time on small talk.
“I’ll go with the three month treatment.” I responded. She sighed, with relief, and said.
“Thank goodness.” This surprised me. Why should she care whether my treatment takes three months of six months? I looked at her quizzically,
“Why did you say that?”
“Because a six month seems soooo long.” She became flustered, something that I don’t see very often, but she quickly gain control of the conversation. “Why did you chose the tougher but shorter treatment?” she asked. I responded,
“Because, as a mom I don’t have the time to be sick, the shorter the time period that I feel bad, the better.”
“That’s the responses that I get from most women.” She stated. Interesting I thought as I started to drift into my own thoughts.
“…a port” What, oh she was still talking to me.
“What about a port?” I asked
“You can’t have one” She stated.
“Why not?” I asked. “Did I just say that?
“This hospital is a trauma center, and with what is happening in New York, we are now on high alert. So all non-emergency surgery has been canceled. Which means that your can not get a port.” She said as she stood up “I want to introduced you to the nurse in charge of your chemotherapy.” And she was up and half-way out of her office. Grabbing my purse, I notice my hands again and said, trying to lighten the mood.
“The positive side of recovery is that for the first time in my life I have long beautiful nails.” With out missing a beat she retorted.
“Don’t get used to them” As she jogged down the hall with me chasing after her.
The chemotherapy room was at the opposite end of the hall from the waiting room. We walked/ran down a short hall that opened into a large room. The room was bigger than I had excepted. It was rectangle shaped, with a nurse’s station in the center the nurse’s station looked more like command central. Anyway, the good doctor and I were standing at the entrance when she sees the nurse that was in charge of my case. I stood there taking it all in as the two women talked.
The first thing that I notice as I walked into the room was the smell. Chemotherapy has a distinct order, I can’t describe it, yet I will never forget it. Aromas are powerful, one whiff of a familiar smell can send your mind racing down memory lane. Fragrance companies know this and have been capitalizing of it for years. While breathing in the chemo smell I looked around the room, I could only see what was to my right, because the nurse station blocked the view in front of me and there was a small wall to my left. I saw three beds, each with its own hospital curtain, one was occupied and the curtain was drawn. These beds frightened me because my only experience with chemo was from the movies, where I’d see a person looking half dead, laying on a bed with and IV attached to there arm, the movies made it look like the chemo was taking hours. Seeing these beds didn’t make me feel any better.
“Traci, I want you to meet Eva” The two women were standing right in front of me, I was staring at the beds and I didn’t notice that they had walked up to me. We shock hands. Eva was in her late thirties to early forties; she stood about 5’6” and was of medium build. There were two things that I noticed about her. One; she dyed her hair a very light shade of blond. Second; that she was wearing a white lab coat over her dress, and on her lab coat there were a dozen or so angel pins. Dr. O'Brian turned to Eva and said,
“This is Traci, she is well read.”
“Oh,” was Eva’s reply. And Dr. O was gone.
“Well read?” I thought, “What did she mean by that? Is good that I have read a lot about cancer and its treatments? Or is it bad because that would make me an annoying patient who thinks that she knows as much as the medical personal?” I was never sure if that comment was a complement or an insult. Anyway Eva gave me an information packet, kind of like “Chemo and you” I didn’t have the heart to tell her that I already had every pamphlet that was in the packet and I and had read them,
“You are schedule for you first treatment on Thursday at 2:00”
“Wait!” I said “I can’t come here at that time, I have to get my kids from school!” Eva shrugged her shoulders,
“That is the only time this week that I can fit you in, and Dr. O'Brian wants you to start immediately ”
“Ok, I’ll work something out” then I headed for the parking lot. Weird I thought, they wanted me to start my chemo on the 13th, there was that number again.
As soon as I got home I asked Mark about Paul, there was still no word. Although the temptation to watch the news was pulling at Mark and I-we kept the TV off, tried to have a normal dinner. The phone rang. Normally we don’t answer the phone during dinner, but nothing was normal that day. Mark answered the phone, it was Lindsey. She called to tell us that Paul was home.
A brief note: It took a few days for town to learn its fate. We had lost two residents, also one of the elementary school teachers (who was out on maternity leave) lost her husband. With the death of the teacher's husband 9/11 turned from abstract to the very real for the local school children. Although no one from our church died at the World Trade center, we had two parishioners who lost co-workers.

Thursday, February 22, 2007

More Test: Chapter 27

The second half of August was to be filled to with more test; like bone scans and X-rays which means more doctor visits. I had another appointment with Dr. O'Brian, it started out just like any other visit to the cancer center; a hunt for a parking space, check-in, write a check, have blood drawn…wait. The doctor came in to the waiting room to get me and we both jogged to her office. She told me that I had healed enough to discuss chemo treatments. Part of me wanted to put this off as long as I could the other part of me wanted to get the chemo over with.
Remember I had stage 1 node-negative cancer, so after the surgery there were not any cancer cells left in my body to spread…in theory, but my doctor wanted to give me ‘just in case’ chemo called ‘adjuvant chemotherapy.’ There is a big debate going on as to whether or not a woman with stage 1 node-negative cancer should even have chemo. The treatment can save some women’s lives, but for others it has no effect, the problem is right now doctors don’t know which group is which, so they want to give the chemo to almost everyone. Breast Cancer Activist Rose Kushner, the woman who did so much to improve Breast Cancer treatment, didn’t like adjuvant chemo and fought against it becoming standard treatment. When her cancer returned after nine rears in remission, she refused the chemotherapy treatment. Many women will go through with the chemo because of the chance that it might help them. Others will refuse the chemo, but will try alternative medicine. Still there are the women who feel that the surgery is enough. Then, there is also radiation
Dr. O'Brian never mentioned radiation, she wanted me to have the chemo, she explained that even though it would be adjuvant chemo, she still recommended it. She told me that since I was doing so well that I could chooses between two different treatments CMF-Cytoxan (cyclophoshamide) methotrexate 5 fluoruracil or CAF, the difference between them is that the drug methotrexate is replaced by a drug call Adriamycin. None of which meant a thing to me. The difference as I understood it was the CMF would be given about twice a month for six months, there would be fewer side effects with CMF, I would feel less sick and I probably would not lose my hair. On the other hand, the CAF would be given every three weeks for three months, I would experience some side effects and I definably would loose my hair.
After our talk it was on to the examination room, I changed in to paper shirt while Dr. O'Brian washed her hands, then she examined me, A light down the throat, a tap on the back…
“Deep breath…” tap-tap.
“Again…” Tap-tap. I was thinking about our conversation, figuring that the chemo was in the future…the distant future, when I discovered an interesting trait about my oncologist. This woman is a person that you would want to play poker with because her eyes betray bad news. She was tapping here-checking there, making occasional eye contact when suddenly mid-conversation her eyes drop to the floor-then she said,
“You have a few weeks to decide about the chemo, I want you to make an appointment for early September.”
“WHAT, I have to decide so soon?”
“Yes, make an appointment for early September.” Oh, well. I guess it was time to use my library training and hit the books.
It was late August so it was not a good time of the year for a mother to have to make a big decision. After all it was back to school time and there was so much to be done, so many purchases to make; like back-packs and paper, and markers, and lunches boxes and new shoes and clothes. And don’t forget one last trip to the Jersey shore. Who had time to read up on different kinds of chemotherapy, but read I did.
After researching the subject I decided that I wanted the chemo. I mean it’s not that I wanted the chemo, it’s just that I felt I had a better chance of surviving if I had it. Part of the reason that I wanted go through the process is because my mother didn’t.
Evelyn also had node-negative stage 1 cancer, her doctor decided to give her radiation instead of chemo, and then she took the drug tamoxifen. My mother was more afraid if the chemotherapy than she was of the cancer, I remember how happy she and my dad was when she was told that she didn't need it. Nobody knows if she would have lived if she had been given the chemo, I only wished that she had tried it. I decided that I wanted to use any and every treatment available; I was not giving up without a fight.
My sister Valerie sent me a booklet that she found on chemo. Being that she is in to New-Age stuff and alternative medicines I expected that the booklet would have me injecting some flower extract, or something equally as strange. I was wrong, the booklet she sent explained why a woman should consider adjuvant chemo, and that women that go through the process increase their life span on the average by 5% …I'll take it.

Monday, February 19, 2007

Dear Insurancy Company: Chapter 26

Dear Blue cross/Blue shield, why are you being so mean to me? This is how I wanted to start the appeal letter that I wrote to my insurance company. Up until now they had been pretty good, I mean they didn’t pay for every thing, but they were reasonable. I knew that fighting cancer was not going to be easy or cheap. Staying alive means endless hours waiting to see this doctor or that doctor. It means waiting to have this test or that test done, all the while being subjected to endless hours in waiting rooms listening to soap operas and games shows. I have always liked books on tape for when I drive, but now I depend on them to block out the sounds of bad TV.
Then it’s more hours waiting for test results, and just when it looks like you might have a few days rest THE BILLS ARRIVE, and the experts wonder why so many people being treated for a major illness become so depressed.
The only insurance that we have is through Mark’s job because my part-time job offers no benefits, so what ever his company gives us is it. Anyway back to my appeal letter, I was writing to appeal the cheesy amount of money that Blue Cross had paid for Dr. Asgari to perform the breast reconstruction surgery.
I should not have been surprised that the payment was so low; I had been warned from Lacy( the woman who handles the insurance companies in Dr. Asgari's office) that there might be trouble. You see Dr. Asgari might be happy with his adopted country but he was not happy with American’s HMO system (who is) so he refused to play. He was not a member of any HBO, when a person chooses him as their doctor, he-the doctor not the HMO sets the rate so a bill is submitted to the patient's insurance company and what ever they don’t pay the patient does.
It is the law in New Jersey that insurance companies must pay for reconstructed surgery after a mastectomy, what the law doesn’t say is how much they have to pay. So my insurance company felt that reconstruction should cost $7000 and they will pay 70% of that or about $4,900, not bad huh? Well Dr. Asgari charged $10,000 for his reconstruction surgery, so now I own the doctor over $5000 and I still needed the second part of the surgery done which will cost another $6000. So I was writing an appeal letter, hoping that the insurance company would pay a little more toward the surgery…they didn't.