Wednesday, December 31, 2008

Happy New Year!

Hello everybody it's Bryan(aka Meaghans boyfriend).

I just wanted to thank everyone for being a part of Get The Bean. For those of you who follow our blog, visit our website and even made purchases we are very thankful and hope you will continue to enjoy G.T.B. We have had a terrific response so far.

For those of you who have participated in our G.T.B fights cancer program we thank you even more. I have personally read each one of your stories and I have to say you are all very amazing people. Our prayers are with you always. It was very difficult but we decided on two stories for our Fighter of the Month program to start the New Year off right. Check back tomorrow to see who they are. All of the fighters are still eligible to be chosen at anytime in the future(and I have to say that it is likely we will see some chosen from the stories we currently have since there are some amazing fighters in there). We hope we will be able to raise awareness and funds for some very worthy causes. Make sure to tell your friends and anyone who is in the fight about G.T.B cancer awareness program.

We hope to have some more fun giveaway programs this year also so keep checking in to see how you can get some great coffee FOR FREE!

Once again we thank all of you for making 2008 a great year. We wish you all a very happy and safe 2009. In these difficult times the only thing we can do is to press on and try even harder to make a difference in the lives of those around us. Whatever your fight may be remember it doesn't hurt to start the day off with a great cup of coffee!


Tuesday, December 16, 2008

Carrie fights Cervical Cancer

My name is Carrie, and I am 30 years old. I have been married to my wonderful husband for 7 years and we have 2 beautiful girls. Sierra is 11 and Reagan is 5. I also have 5 beautiful nieces. Needless to say, testosterone is lacking in our family! Let me back up a little bit. My 30th Birthday. I was not looking forward to it at all. I have always been an old soul, yet very young at heart. I love dressing up for Halloween, drinking hot cocoa in the winter and snow ball fights. I still collect Tiggers! I was not prepared to accept the “adulthood” that I thought came with turning the big 3-0. My birthday was on a Monday. Tuesday I woke up and felt odd. By midday it was like heartburn. By dinner it was intense. That night I went to the ER and the next morning my appendix was removed. Boy, this 30 thing was great and off to a hell of a start.

I always scheduled my yearly pap exam around my birthday. I liked my OB and unlike most of my friends I didn’t mind going to the “cootchie doc”. Unfortunately, my appointment had to be rescheduled due to the appendix thing, and so it was going to be September when I went. No big deal, I went, I joked, and I left with a new script for birth control. We even discussed me trying again for a boy. A week and a half later, I received a call from Joan, my Docs nurse. She stated that the results were “questionable”. The cells didn’t look abnormal, but not exactly normal either, so they wanted me to come in for a colposcapy. I said sure, no problem. Joan steadily asked me if I was ok and if I had any questions. Nothing came to me, so I said no. She seemed to be surprised by this. A few weeks later, I had the interesting and uncomfortable procedure. I compared it to someone using a melon baller, just on my cervix. I bled for a few days, no big deal. Doc didn’t seem too concerned, stating they looked minimally effected, and I shouldn’t be worried. So, I wasn’t. Just more “screw turning 30” thoughts.

The following week, Doc called to say that to his surprise, the cells needed further testing, and I needed to schedule a cone biopsy. I think this is when my husband began to worry. It didn’t help that the biopsy was scheduled for his birthday, October 20, 5 days before we left for vacation. I went in that morning, had the procedure, and was home that evening feeling guilty for messing up his birthday. Wednesday, I went back to work. I stopped by my sister-in-laws house (who is my BFF) and was sitting on her couch when my phone rang. I looked at the caller ID and I knew it wasn’t good. My Doc proceeded to ask me if I was in love with my uterus. I kind of laughed and stated that we had been together a while, but I could part with it if I had to. He proceeded to tell me that it needed to come out. So I began to wait patiently for the scheduling nurse to call me. Later the next day, I called Docs office and left a message for him to call me back. I could remember NOTHING past we need to schedule a hysterectomy.

I have read many blogs where woman give the levels and initials that identify the type and severity of the cancer they have. I still don’t know except for I showed 2 different types. All I do know is I didn’t want it in me any longer than it had to be. My oldest daughter asked me if I felt bad, and why it had to be me. I explained to her that I was glad it was me. I think she and my husband looked at me like I had lost my mind. I told her that if Cancer choose me (who had the ability to have an everyday procedure that would offer me a 95% cure rate) instead of a young girl who hadn’t had the chance to marry or have children yet, or worse would go thru the things I had read about in stories like Meaghan’s, then I was glad it choose me. My pathology report post-op showed no residual disease. I will still go for my Pap tests a few times a year for a while, just to make sure nothing comes back. I still haven’t really dealt with how I feel about all of this with the exception of a few nights crying over not being able to have a son. I cringe when I hear babies cry, and I don’t like to see pregnant women. One day I may come to terms with everything, but for now I am just taking it day by day, waiting for the reality of 30 to hit me.

I have never been asked to share my story by someone before. Although, I have been working on a Photo mural book since I was diagnosed, no one has ever really cared about my story. In reality, most people I meet are surprised to hear I am in remission even though I have never hidden it. I assume it is strange to see someone happy and healthy after dealing with a baseball sized aggressive tumor. I have never met another Glioblastoma brain cancer survivor in person, only online. When I discuss it, the topic always turns to someone losing their battle with GBM and with the statistics as bad as they are I am not surprised. I struggle to think of words to describe my life at times. I went from an overflowing creative Fine Arts student who thought I should get paid to write my Term papers (I really did, they were that good!) to a student who stresses to get even the most weakly poetic words on the page. My husband is a writer and I only wish I could flow as smoothly as he does. However, when Meaghan asked me to share my story I was both surprised and greatly honored. As I lay on the MRI table earlier this week and they struggled to try and “SAVE” my vein *which means wiggling the IV inside my arm around until they actually get it into the vein* and finally settled on my hand, I knew I should be sharing it. Many times in my life I forget I had cancer at all, no one mentions it, and no one acknowledges it anymore. Only as I lay in pain, having a panic attack, struggling with a cold I never used to get, or everyday as I take two 1000 MG pills am I reminded that I am a survivor. I celebrate all my anniversaries but if I stopped to think about how many people in my life actually remember why I am celebrating, it would be a depressingly small number. I knew I would not be able to write up my story from scratch. You see I am completing my second bachelor’s degree in Media Arts and Animation and currently my class is killing me! This is primarily my reason for not having my book completed; I take on too much for one small person. I work a full time job, I intern and do contract work for a studio in New York, I go to school part time and I try to do as much charity work as humanly possible. I wanted to share my story from my book. Here is what I have written so far (hopefully one day you will see it and the website that will accompany it out there in the real world! ^_^):

“While I studied in Tokyo Japan in the fall of 2004, I walked several miles a day to and from my university. I rarely took the subway and chose to walk as much as possible. It was not the concrete scenery that kept me going, but the lack of funds and a will that I would study in Japan, and I would do it no matter what it took. Japan was amazing. There was so much life in Japan. I made numerous friends, and I maxed out a credit card on food and art supplies. During my times there I was introduced to an excellent photography instructor named Shinya. It was my first step into the world of Photo books, and I jumped head first into my projects. It was costly and time consuming, but it was the easiest way to communicate my feelings. I left Japan in December and settled back into my normal university life that following year. On April 4th, 2005, the first nice day of spring, I decided to start walking the 45 minute hike through the city to my home much like my hikes in Tokyo. The sun was blinding, and it had just started the unseasonable heat wave. I made it home perfectly fine, and decided to go to the library down the street for free movie rental since they have the best foreign film selection. The movies that I wanted were checked out, so my friend and I made our way back to the house. When I walked in the door it was so dark. It felt as though my eyes would never adjust to the light. I could hear the trickling of the shower in the one bathroom located through my bedroom. My then fiancĂ©, Kris, was taking a shower, having a weird sense of humor I decided I should bang on the door.

“Come out of there! It’s the police! Open up!” What a funny joke, right? A few steps later, I was walking in a circle and laughing like a mad man with tears streaming down my face. For me, I could hear the strange laughter and knew it was coming from my mouth, but it seemed unreal. I could not think about the laughter for long, my head was cricked to the left side and I was seeing flashes of objects. Ceiling, dresser, friend in the doorway. Ceiling, dresser, friend in the doorway. The same repetitive images over and over as I twirled in place. The sounds were worse. I could hear that Kris had come out of the bathroom having finished his shower, and he was talking with my friend.

“What happened” “I don’t know, I think she hurt herself.” (I laugh and cry when I get hurt sometimes). “Honey, are you ok? Honey, stop doing that! Honey?” The last thing I remember was the simultaneous “I’m calling an ambulance!” When I woke up, I was on a gurney and the sun was once again shinning in my eyes. Two paramedics were attempting to talk with me but my voice was missing. I felt helpless. I could see the environment around me. I remember glimpses of my neighbors standing outside. Groggily I tried to explain that I am scared of needles. I started crying uncontrollably and searching for Kris. When I found him in the front seat of the ambulance, and I begged him to make them not stick me with the needles. From my place on the gurney, I could not go anywhere. I felt like I weighed a ton, every movement of my head felt like it took more effort than I had ever exerted before. The paramedics were asking me questions and engaging me in dialogue that to this day I do not remember. The lights from the emergency room were almost as bad as the blazing sun light. I remember lots of faces and flashes of images, but the next full memory I have is sitting in the ER room 19 with Kris and my friend in the chairs next to the bed. As a art major I remember the art work being so terrible in the rooms, single block colors with a white matted border hanging from the walls, not even fit to call it art. My body felt fine, I have no idea why I felt ok but had lost a chunk of my memory and was ok with that. I told everyone that I was ok, and that I was dehydrated. I apologized for not drinking any water on the way home and reassured them that I would be more careful next time. I told them these were just routine tests. I begged and begged for some water. When the doctor entered the room she has a striking resemblance to my eldest sister. She even had the start of the same birthmark my sister possesses but not as drastic. She has curly happy hair, but not a smiley disposition. Her name was Dr. Bohn, and my mind raced to the old Bevis and Butthead response of “heh heh heh heh, her name is Bohn. Heh heh heh heh!” When she sat on my bed, it was not with a “dehydration is a serious matter look”, it was much more grave.“You have a Tumor.”

You have a Tumor.

Have you ever had such a ground breaking string of words said to you that at the time seemed insignificant, but the more times it echoes in your head, the more it occupies your thoughts? These are my ground breaking words, but I did not respond the way a “normal, well adjusted” adult would respond. There was no worry, there was no sorrow. My mind jumped to Kindergarten Cop with Arnold Schwarzenegger echoing “It’s not a Tumor!” It made me smile. I must be the only patient that upon diagnosis, smiles. I was run through a series of tests, which to me seemed to take a mere second, but in fact I was under observation and study long enough for my family to commute the two and a half hour trip to join me at my bed side. It was nice to see my family, but I did not see what the big deal was. They never came to see me, so it must be something big. I just wanted some water, I was dying of thirst! When Dr. Bohn (still makes me smile as I write it, think about what it would have been like to be name Bohn during the Bevis and Butt head era where everything was funny) came back to my room, she stated that the tumor was fast growing and I would need to be admitted. I was scheduled for surgery the next day. My room was a normal hospital room but I had no roommate. The rest of the night is very cloudy to me, I remember laughing with my sister about my thoughts during diagnosis, and I remember getting woken up by the nurse early in the morning, but only for a few seconds of ultra bright light. I remember having to chew on ice because I was not allowed to have any water. At some point during that day I remember complaining about my catheter and having the nurse remove it. Later that night, I had to go to the bathroom very badly, but I knew that I was hooked up to what felt like every machine possible. I felt wobbly and I did not want to cause more damage by trying to do things myself. I pushed the nurse button and informed her that I had to go to the bathroom. I waited and waited and waited and no one came to me. I tried again and informed them that I needed to go to the bathroom. I could hear the nurses chatting a short ways out of my room, but it sounded like I was underwater. I still to this day think it was from not being able to go to the bathroom, and not that I was drugged up. When the nurse finally answered the call she answered now fully annoyed that I had a catheter. I informed her that it had been taken out and that I had to go to the bathroom. She checked like I was some kind of lying scam artists that likes to play in the ICU. She reluctantly placed a container under me and told me to go. I did and then I had to push the button three more times before she came back to help me take it away. When she did, she spilled it on my bed, and I ended up spending the rest of the night in a soggy, nasty bed. Now I could have left this out, but this is my strongest memory of my hospital experience. This one rude nurse, made that big of an impression on me that she blocks out all other memories. When I awoke later that day, my head was covered in a really soft rag hat. I had several IVs in me now, and I was relieved that I did not remember them sticking them into me, especially the one that went to my heart. My mother informed me that the old woman in the room next to me in the ICU was also named Jetty, but it was spelled Jetti. She told me of the woman’s happiness to hear that there was another Jetty in the world who was young, but I wondered how much happiness she could have knowing that the other Jetty was sitting in the ICU. Not exactly the best place to be at the young age of 21. From my bed I could see the flowers and balloons from my friends and co workers. Kris had brought my monkey that I sleep with every night, and my cow blanket. The first thing that crossed my mind was to get my camera which I carried around with my every where (a habit I picked up from Japan). While a strange request, Kris brought me my camera and I started taking pictures of everything: IVs, self portraits, get well presents, everything to document my time. When my batteries died, they were replaced and more pictures taken. I was still on plenty of drugs, and the soft hat was eventually taken off which exposed my bandaged half shaved head. The earliest pictures of me are smiley peace sign pictures or me making faces. There is no sorrow or depressed feelings. I was moved to another room where I had a roommate, and I started to feel strange. I was on anti-seizure medicine and I was feeling funny in my most intimate places. I tried to complain but no one would listen to me. It was another time during that week where everything was discussed with everyone but me. My voice was not heard by any doctors. I was released from the hospital five days later and was happy to be home. The next day I went to see an oncologist at the cancer center close to my house. The doctor blew off my uncomfortable feeling and told me to get some over the counter medicine. Later that night, I was freezing. As I brushed my teeth, Kris touched my back, his hands felt like pure ice. As I lay on the bed, I knew he was scared because he was frantically looking for the thermometer. My sister who was staying to take care of me, sat with me as Kris went to the local Walgreens to buy a thermometer. After about 45 minutes, I began to worry about him; I was so cold and could not get warm. When he arrived, he carried with him a $20 thermometer that upon placement in my mouth failed to give an accurate reading even though the packaging said “Guaranteed accurate”. We finally decided we needed to go to the hospital and have them do it. Another waiting room, another nurse, same old questions, same old room, it was becoming my routine. When they took my temperature it was 102 degrees. As I was taking off my shirt to change into the ohh so flattering gown, I let out a small gasp. My whole body was covered in little red bumps. Once I had caught site of them, they started to itch. That was my first, but not even nearly my last encounter with hives. I was miserable when they took me to my room. My legs were weak; my whole body ached and itched at the same time. I was freezing but they denied me any kind of blankets. It took my parents a while to get to the hospital and once they arrived they informed us that they could not stay but one night because they had a pre arranged trip. Since my fever was so incredibly high, I suffered through ice baths all night long, with not a blanket in sight. My teeth were chattering from the cold, but at the same time it eased the burning itch of the hives. It was a love hate relationship between me and the ice water bath. It took a full week (seven days) for my temperature to return to normal. I spent more time in the hospital for this than for my tumor! It seemed like every doctor that came in started his conversation with “Well, we think it is the Dilantin, but to be on the safe side…” I even saw an infectious disease doctor. I got a spinal tap, and several blood drawings. It was incredibly miserable. The pictures from this time are of a very miserable Jetty. It turned out the uncomfortable feelings I had been having were the starting signs of my allergic reaction. “Dilantin Hypersensitivity” it is called. If one doctor had stopped to listen to me, I would not have spent a week in the hospital being poked and prodded looking for an answer. In the end I was happy to leave the hospital, but it left my seizure medicine issue up in the air. I needed the medicine to handle the seizure matter, but which one to put me on. The next batch was Depakote. Depakote is a monster sized gray pill that didn’t even last two days before I awoke with full body hives. This time I was told to stop taking the medication and start taking Tegretol instead. Tegretol is a small white pill that worked for about two days on me. The hives that had started to subside were going strong now. I met with my Neurologist at this time to find me a medicine that had no known rash reaction, and that is when I found Keppra (which I still currently take). The list of my allergies is still constantly growing and it seems that with every new pill I take I get a horrible rash. I am even allergic to Priloseq and Zantac. That even stupefied a local dermatologist! I now own a huge vat of cream that is “10 times stronger than cortisone” this was only after I emptied over 15 tubes of Cortisone 10.

Treatment: One step at a Time

Radiation is one of those experiences everyone is curious about but you just can’t put into words. When I went to my first session, I got to lay bolted onto a slab and my face was covered in a wax like substance that began to harden while on my face. The pictures of me during this time are very strange with half of my hair gone and the beginning effects of steroids. I am still smiling, but I have not yet accepted that I have cancer. Even though my first meeting after my surgery with the neurosurgeon called for cyberknife treatment (a radiation knife that “cuts” out the cancer without actually cutting), my oncologist said we would see after my treatments how we would proceed. So, I began my treatments. They were scheduled during the end of my school year on into the beginning of summer. I did my homework using the internet and having friends turn in my homework for me. Radiation is like nothing of this world. Treatment is different for every person, but it is also the same for everyone. Unless you have been through it before, you have no idea what it will be like. My cancer was strange. I did spot treatments (focused on my right frontal lobe) for almost two months. I was worried about how I would feel afterwards. For the treatments which were 9 sections of 5 minute I was strapped into a machine which spun around me and made the craziest noises, like creepy animals in the woods, I was fine. I was reading an excellent book at the time which consisted of several flesh eating horrors that I imagined those sounds coming from. It was not until after I had finished my first month that I started to get very tired. I was on steroids which not only caused me to feel like I was starving and eat everything in sight (causing a 40 lbs weight gain), but also made my legs and arms incredibly weak. I would fall for no reason. I feel going up the steps, I feel walking on the flat smooth flooring on the local library. My legs would just give out and I would go down like a ton of bricks. My face swelled up like a balloon. I was informed that these symptoms were known as “moon face” and “noodle legs”. Sometimes Doctors have the strangest names for the worst symptoms. It was like I was not in control of my muscles. One moment I am up and happy, the next I am lying on the ground like a fish out of water. The actual radiation treatments were not bad. When I went in for my treatments I was placed on a slab, I had a triangle of foam under my legs to keep them from getting tired and I had a blue ring to hold onto to keep my arms from getting tired. The mask was placed over my face and then bolted to the slab. It was not comfortable, and as I gained more weight they had to cut the bottom a bit so I could fit into the mask. When I left the treatments I had little triangle marks where the mask had pushed into my face. Radiation makes you tired and weak and when you finish a treatment you just want to go home and sleep, which is what I mostly did during those days. It was mainly after my treatment was over that I really felt the whole strength of the treatment. I would try and take a bath and Kris would have to help me out of the tub or he would have to help me dry off after a shower because my arms were too weak to hold a towel. If I got up too fast from a chair, I would almost pass out. It was very difficult to get around by myself, without my fiancĂ© I would have been lost.

I had a few seizures when I changed my dosage and was taken off of steroids. They were minor and occurred only in the face, but it has such a draining effect that I am shot when I have one. Chemo is one of those things that affected me the worst, but that is different from most survivors I meet. My chemotherapy was in a pill form called Temodar. I took 4 1000 mg pills a day in which I had to take 3 stomach medicines to over come the nausea. I would take them in the early morning (sometimes I would go to bed afterwards). They had to be taken with a full glass of water and on an empty stomach and I couldn’t eat for an hour afterwards. It was rough to be on steroids which severely boost your appetite and a pill that doesn’t allow you to eat. The morning dose was not so bad, I would take it and go back to sleep and then wait until I woke up to eat, but the night time dose was horrible. It would be 3 in the morning and I would be eating because I had to wait until my stomach settled in order to attempt to satisfy my hunger pains. The one time I did not take my lifesaver stomach medicine, Kytril, I was vomiting non stop for two hours. I threw up so much I chocked on it. Chemo made me so weak for so long. At my yearly gynecologist appointment I bled during my examination and the tiny pin prick to check my iron came back with a very low number. As the finger test is not very accurate, I was forced to wait in a calming room while they called my oncologist to get advice on what to do. My oncologist was not available but the oncologist on call informed me that since I was on chemo I would be anemic and the doctor gave me a sheet on how to boost my iron intake. They scheduled a meeting with my chemo doctor for a week or so later.

About three days later, my best friend (a wonderful Korean boy whom I had known for couple of years) became very sick and wanted to go to the hospital. I pestered the ER administrator if it would be possible to merely ask the doctor a question I had or would I need to check it. Subsequently, I had to check in. No free advice in the ER. The night before I had noticed some red marks all over my body like a bad prank, they were under the surface of the skin and did not itch, so hives were out of the question. I was not concerned, just curious as to why it looked like an instructor went to town on a failed test all over my body. I waited in a different, smaller emergency room this time, and spent my time convincing Kris that this would be the first time I was in the hospital that I would not have an IV or have any blood drawn. Too bad I didn’t know on any wood then! After taking one look at my chest they decided to drawn blood. The first blood drawings were not so bad, they hurt a bit but at least I didn’t have an IV. Wishful thinking on my part! After the blood somehow became unusable they were forced to draw more. This time it was horrible. When the results came back, it was once again Dr. Bohn (who did not remember me but I remembered her) who came to tell me that I was staying. I received a very harsh lecture about how much danger I had placed on myself and how no matter what my symptoms were I needed to come to the emergency room immediately if anything changed with my body. A normal human being has a platelet count between 150 and 400 (thousand) A normal cancer patient has a count between 25 and 45. My count was 7. Yes, 7. I felt fine. I came to the hospital because my best friend was sick and he could not drive.

I had to get a platelet transfusion. This meant another stay in the hospital, another round of misfortune. The platelets were administered and I was told it was going to be an all night thing. I sent my husband home because I didn’t want him to lose his current job which he was striving to keep while still being my caretaker. After he left and the bag emptied, I found out that all the platelets I needed were in that one treatment but that I needed to stay over night for observation. I started to feel funny so I asked the nurse if I could be allergic to the platelets. She told me it was impossible. I then asked it I could be allergic to saline because it always makes me feel horrible, I was once again told this was impossible because our bodies are composed of salt water. I tried to explain to her that I did not feel right and something was wrong. She told me to try and sleep and everything would be better in the morning. I went to the bathroom before going to bed (quietly as I had a roommate that was probably already disturbed by my 10:00 admittance to the room) and I pulled down the front of my gown to reveal full body hives. I called the nurse again and she reluctantly came in the room. When she saw the hives all over my body her mood changed abruptly. She gave me a Benadryl shot and I went to sleep. The next day I was informed by the Doctor that you can in fact be allergic to platelets.

I visited my Chemo Dr. for the appointment a couple days later and he took more blood. He decided that with my counts so low, I should cut my treatment two months short because I was so anemic. I was weak, and tired after that point. Strange that I was fine when I checked in, but horrible when I checked out. Hospitals have a way about them that makes your feel worse first.”

If you have read all of this, then I applaud you! ^_^ I couldn’t find a way to edit the writing to take out some of this long winded writing. Now, you know everything about my story and I hope that it helps someone feel better about theirs! If you have any questions or need anything from me, please feel free to contact me through Meaghan!

Love Love Jettychan

Sunday, November 30, 2008

Michelle' Fight Against Uterine Cancer

My name is Michelle Sybert. I am a 31 year old mother of two living in Southern California. I own and write for a blog called Her Cup Over floweth. I write about being a cancer survivor and parenting two preschoolers! Recently, I was asked by Meghan, via my blog, to share my cancer story.

Her it is:

In January of 2006 I was diagnosed with Stage I Endometrial Stromal Sarcoma, which is a fancy word for uterine cancer. ESS is a very rare form of uterine cancer however, occurring in roughly 3% of all diagnosed cases. I had a low grade version of this extremely rare cancer and at 28, almost 29 years old, I was blown away by my diagnosis. It was stage one, yes...It certainly was not the end of the world. I was thankful to be alive. I did not have to have chemo or radiation and in what seemed like a whirlwind of events, I was diagnosed, treated and given the blessing of "no evidence of disease". I am a very fortunate fighter.

What I haven't told you in this story is that at 29 years old, I had a total abdominal hysterectomy. This meant the doctor removed everything-ovaries, tubes, uterus. It also
meant that I would be enjoying premature menopause. Bleck! For some, menopause is like a speck of dust on your television screen-barely noticeable. For others, it's side effects can be down right ugly. Because my particular cancer is estrogen driven, I am not allowed to be on any
form of hormone replacement therapy (artificial or natural). This makes for some very interesting adjustments to my emotional state and diet! (Did you know soy products contain estrogen enhancing properties?)

You cannot prepare for such a thing as this-Cancer. For me, however, there was little down
time. Little time to "reflect". With a 2 year old and 1 year old
there was very little time to stop and contemplate what it all meant. i was too busy chasing after two toddlers! At times, I felt like I never even had cancer-except that every time I put on my
PJ's, I see the 6 inch scar on my tummy. I struggled for many months with depression and I never fully relied on the God I said I believed in. Ibattled the those hormone fluxes inwardly alone. Since then, I have begun to trust God completely with my life and my cancer. I am
incredibly thankful to him for these last three years because you see, had my husband and I waited to have children-they might not exist. I was pregnant with my daughter 3 months after getting married and pregnant with my son 7 months after my daughter was born. I was diagnosed with cancer when my son was 9 months old........I am deeply deeply thankful for my two little blessings.

Cancer survivors and those in the midst of battle often say they are thankful for each day they are alive. It's not just some pithy saying...they say it because it's true.

I support Get the Bean and your endeavors to raise awareness about Cancer. thanks for fighting the good fight!


Wednesday, November 26, 2008

The Fight Against Cancer

This is great! I met Kim a couple weeks ago when she sent me an email. Kim's mother also fought cervical cancer when Kim was a young girl. And Kim lost her uncle to Lung cancer in 2004. I can't imagine how difficult it must be for someone to see cancer all around them, just awful. Kim has been kind enough to offer my bloggy friends a great deal! She has written the following post so read it and please leave her a comment saying hi! Oh and if you don't have anyone to get one of these for theres always me...lol....they do look GREAT!

The Fight Against Cancer

Everyone in America today has someone in their family and/or knows someone who has been affected by cancer. Meaghan has made her fight against cancer known to us all and she is determined to get the best of cancer and not let cancer get the best of her. Through reading her blog, I've learned more about cancer outside of National Breast Cancer Month than ever before. Breast cancer is in the forefront because it is one of the leading causes of cancer for women but as Meaghan has taught us all, cancer comes in many forms.

With cancer affecting so many lives and families, it should not just be in the forefront only one month out of the year. Cancer is a daily disease not a monthly disease. In honor of Meaghan and all others who are determined to live their lives and fight cancer everyday, I would like to offer you, her supporters, free shipping on pink gifts and gift baskets from Fruit Nut & Candle Gift Baskets.com. Send a gift to a cancer survivor to show your continued support and encouragement for their hard fought battle(s).

Just log on at fruitnutandcandlegiftbaskets.com/breastcancer and enter the code "meaghan" at checkout to receive your free shipping. This coupon is good until December 31st 2009.

Thank you Meaghan for displaying the power of the human spirit to us all.

Thursday, November 13, 2008

Joni Battled Cervical Cancer and WON!

It was October of 2005, I was 27 years old. I wasn't aware that the little bit of spotting I was having was actually a warning sign of something much larger. At first I was not concerned. The month before I had taken a trip out of town. I didn't realize there was a mix up with my pills until after I was gone. Instead of my normal dose of birth control I received a pack of "low dose" pills. Since I used the pills to regulate my cycle I didn't think it would make much difference. I attributed the spotting to the change in dose.

When the spotting continued the next month, I figured it was just taking a while for my body to adjust to being back on the normal dose. It wasn't often and just a little pink. No big deal. Another month came. The spotting was getting heavier and more frequent, but still not enough that it caused alarm. It was the holidays and I had been under some stress. I figured it was now the stress causing this "issue". In the mean time I was also starting to have bladder problems.

By February I was spotting rather frequently. It was now blood and not just the little bit of pink from the months before. My bladder was so weak I was running to the bathroom at least 3 times an hour, sometimes 4. I had started wearing pads at all times. It was much easier than changing clothes from the unexpected bleeding and the "mild" loss of bladder control. I couldn't go anywhere, or do anything, without knowing a bathroom was right there. Needless to say this greatly impacted the new dating life I was creating. I finally decided to call my doctor and make an appointment. Not for the bleeding, but because my bladder was out of control!

I never made it to that appointment. Instead, I went home for lunch one day. I was no longer spotting, I was bleeding, and heavily. It was equal to my heaviest day.However, I wasn't due for my cycle for another 2 weeks. I did what any female would do...I called my best friend. She told me to call my gyne immediately. I did, my normal gyne wasn't available, so the office got me in with another doc in the practice. In my mind I was thinking it was a broken blood clot. I was a smoker of 14 years, I had been on birth control for 6 years. Yes, I was convinced it was a blood clot.

During the exam the gyne said "A-HA!" and explained there was a polyp on my cervix. The bleeding was due to this thing breaking. No big deal. He removed 80% of it to send off for biopsy. But his ending words are what hit me..."Is it cancer? Naaaw, I don't think so. You're young! Not saying it's 'impossible', but I don't think so." I sat there in the gown thinking Cancer? Why would he say such a word?? But blew it off...because he said I was too young, and he didn't think so. He's the professional here...right?

It was almost a month later by the time all the tests were done being run. I got the call around 10 am Tuesday April 4th, 2006. My gyne's office. They had the results, the doctor wanted me to come in (she hadn't seen me yet), could I be there at noon. I knew. If it was still at the pre-cancer level they would have told me over the phone like the fill-in gyne did when he said it was definately pre-cancer. But they wanted me in the office. I knew.

I started to prepare myself on the way there. I could manage chemotherapy. I could manage radiation. I can do this! I will beat this! When the doctor told me treatment would be surgery...well I wasn't prepared for that. When she said a hysterectomy...I REALLY wasn't prepared. It was stage 1B1 (possibly 1B2) adenocarcinoma of the cervix. 28 years old, single, no children, and I would be scheduling a hysterectomy within the month. The office made an appointment for me to meet with a Gynecological Oncologist on Thursday the 6th. Gyne/Oncos are the experts in "female" cancers, if cancer is ever even just suspected, be sure to get a referral to have a gyne/onco handle things!

I met with Dr. Eileen Segretti that Thursday. We went over all the test results. She did an exam and remeasured the tumor. Cervical cancer is most often staged based upon the size the doctor can see (if its bif enough to be seen). Under 4 cm is stage 1B1, over 4 cm is 1B2, evidently I was bordering the 4cm line. Dr. S said she felt it was under the 4cm range and kept the stage at 1B1. We scheduled surgery, a radical hysterectomy with pelvic lymph node removal and tacking up of my ovaries, for May 15th. I put it off a few weeks in order to move into my new place, and arrange my healing time to fall in line with my best friend's visit. I just had to handle those important things first!

After surgery Dr. S said everything looked good, but we would have to wait on the pathology reports. 2 weeks later I received another kick in the head. The tumor was larger and much deeper than expected. Instead of growing around the cervix like normal tumors do, mine decided to grow straight through the middle. I was fortunate I didn't put surgery off any longer than I had. With this new information I was told radiation treatments with a chemo booster would be required. I was to start those as soon as possible. A port (basically an IV with a flexible needle) would be inserted into my chest. I would keep this in to ease the pressure on my veins during the chemo infusions.

2 weeks later I was put under to have the port installed, and had my first chemotherapy infusion when I woke up. There would be 6 in all. I should have known from that first day how much the treatments would suck. I didn't expect there to be many women my age...but someone a little closer would have been nice. I spent 4-5 hours every Wed. with women that had grandchildren my age. On my third treatment a woman looked at me with shock and told me I was too young to be there. I so badly wanted to respond with "no shit".

The day after my first chemo I had my first pelvic radiation treatment. I was supposed to have that the day before, but the machine broke. 25 rounds of external radiation. They told me side effects don't normally start until the 12-15th treatment. Mine started on #5. With pelvic radiation your entire digestive tract is effected. I couldn't eat, everything made my insides scream and twist. For those 6 weeks I basically lived on cinnamon graham crackers and plain white rice. The only fluid I was able to drink was Gatorade, everything else upset my stomach and I would get dehydrated. The fatigue was incredible. I never knew I could feel so tired and worn down! Even when I was awake my body felt too heavy to move.

I learned to love my chemo days because I received steroids with my meds. That was the 1 day I had any sort of energy or appetite.

After 6 weeks and 25 external radiation therapies, I started the 3 internal high dose radiation treatments. While the HDR was easier on my digestive system, it caused another set of side effects. For a couple days after treatment everything felt "crispy", not to mention the burning sensation every time I went to the bathroom.

All treatments ended in August of 2006. In Sept the chest port was removed. In October I had a blood test done. I had started experiencing hot flashes and really bad mood swings. The results showed I was now in medical menopause. Whether is was due to the shock of the surgery, the chemo, or the radiation...nobody knows, and it doesn't really matter either. I started on hormone replacement therapy (Premarin).

Everything went well for a couple months. I put back on the 20+ pounds I lost during treatments. In the end of January/beginning of February of 2007 a new set of issue arose. I was told prior to radiation that the doctor was concerned about a "loop of intestine" that had moved and basically fell after surgery. The radiation doc was worried about this causing an adhesion later on. Dr. S said the treatments were necessary, and that adhesions normally take 2-3 years to develop. We would deal with it "IF and when" it happens.

6 months after treatments ended I started having problems eating. Every time I ate I would end up in pain for a couple hours afterward. Somedays it was so bad I would go home to my heating pad and percocet. I was put on a low residue diet. I wasn't allowed to eat fresh fruits or veggies, anything fried, little-to-no dairy, whole grains, and the list went on. It was easier to say I was on a high carb diet. I was losing anywhere from 1-4 pounds a week until I learned how to control my pain.

The end of May I went to the ER. I was in a LOT of pain and unable to hold food down. After a CT scan I was admitted into the hospital by our camp. Major obstruction now. I was put on IV fluids only...not even ice chips were allowed. 2 days later I was brought back to my home hospital. Because it was a holiday weekend, I wasn't able to see Dr. S until the 4th day of being hospitalized. On the 4th day I was told the contrast from the CT scan was just beginning to reach my colon. I was given the option of waiting this out or going to surgery. Dr. S told me I would definately need the surgery at some point in the future though. We scheduled surgery for the next day. Afterwards I was told I made the right choice, there was no way I would have left without it. And of course the couldn't use the same incision made for the hysterectomy...I now have a horozontal scar and a vertical scar...they look like an upside down cross. Like I'm marked by 'the beast'.

Less than a week after that surgery my bladder decided it had had enough. It no longer wanted to function properly. I had no control over it while I slept. After much embarassment I swallowed my pride and went to a urologist. My bladder was scarred and inflammed. I was told it was "pissed off" for lack of a better term. I was put on Detrol LA. Thankfully it has helped get things back under control, but there are still those occaisions.

Most recently I had a scare of recurance due to an enlarged lymph node. I was fortunate to have negative results on the PET scan, and was diagnosed with lymphedema. This is another life-long condition, but at least its one I can control with rest and compression socks.

I still can't eat right, but I've learned how to manage things, and they do improve every day. Just the other day I was able to eat a small portion of salad. It had been 2 years since I managed to do that without becoming sick!! It's the little accomplishments that make me realize just how far I've come. I have learned an awful lot in this journey. Some things I never wanted to know. Others have made me become a better person. But one of the best parts of the entire experience is the amazing people that have come into my life because of it. The doctors, the nurses, the support from message boards (www.hystersisters.com was a sanity saver!), and people in my life that I never would have bonded with otherwise.

Cancer has turned my life upside down and inside out...but it didn't take me down. I'm proud to call myself a cancer SURVIVOR.

Joni R
1B1 cervical adenocarcinoma

Wednesday, October 29, 2008

Help Figth Melinoma in Memory of Stephanie Aleong

Our First Cancer Charity to receive proceeds from Get The Bean is the Melanoma Research Foundation in memory of Stephanie Aleong. Those of you who follow my personal blog know who Stephanie was. For those for you who do not let me introduce you.

Stephanie Aleong was an absolutely amazing woman, professor, family member and friend. She was also a woman battling melanoma. Stephanie was very passionate about fighting melanoma! Not just hers but all melanoma because that was her, selfless and determined. To know her was to love her and to fight her, well that would be a long difficult road for you because she was a fighter. Thats why I was so shocked when she died suddenly last week.

Many of us wandered around the law school after we got the terrible news. Not knowing what to do, say or feel we just stood there in absolute shock. I have thought a lot about what I can do to help keep a part of her here, a part of us! This world was a better, safer, kinder place with her in it and I just don't have the heart to let that go. So this is my little contribution to keeping Stephanie, the fighter, her with us.

For as long as I have Get The Bean it will be donating a portion of the proceeds from ALL purchases of the Mexican Coetepec to the Melanoma Research Foundation in memory of Stephanie Aleong. At the end of the year I will be sure to let you know how much we were able to raise!

Saturday, October 25, 2008

Why We Care- Meaghans Story

This Blog is connected to our coffee website which IS OPEN AND READY FOR ORDERS. We are going to be giving back by donating $$$ to various cancer charities. Read below to find out WHY we are doing this. To find out how you can get $$ for the charity of your choice keep on reading. If you participate you could raise tons of money for the charity of YOUR choice!

To Buy Coffee CLICK HERE


Why We Care:

Meaghan was a young, healthy vibrant 28 year old attending law school in the winter of 2006. During her second year of classes she began feeling ill. She went to numerous doctors looking for help. Each doctor suggested it was all in Meaghan’s head; maybe she was depressed, mentally ill or over-stressed. Because she had always been healthy and was young the doctors assumed nothing serious could be wrong. Enduring extreme pain, bleeding and exhaustion Meaghan kept returning to her doctors looking for help. Still no one did anything to address any of her health issues. Meaghan’s symptoms became worse with each passing day. No one believed she was ill and so she continued to attend classes and tried to live a normal life. Eventually the pain became unbearable so she drove herself to the ER.

The doctors at the Emergency Room also suggested Meaghan’s pain was all in her head. However, they were required to give a CT scan due to the symptoms she complained of. The CT scan showed Meaghan’s pain was not in her head. She had a large tumor on her cervix. The tumor had grown so large it crushed her ureters causing her kidneys to rip open. In February 2007 Meaghan was finally diagnosed with advanced cervical cancer, stage 3b. The same doctors that had told her she was fine were now telling her and her family that Meaghan would not survive this.

Meaghan decided not to give up but rather to fight. After two weeks of hospitalization and blood transfusions Meaghan was flown to Dana Farber Cancer Institute in Boston Massachusetts. Upon arriving the doctors were both amazed and horrified. Amazed at this young woman’s spirit and horrified at the pain she was forced to endure. Teams of doctors attended Meaghan in an effort to diminish her pain and save her life. Meaghan underwent chemo, internal & external radiation as well as numerous surgeries. With only a 20% chance of surviving Meaghan and her doctors fought hard against cancer. In July 2007 she won her battle and was cancer free.

Although she won her fight Meaghan continues to struggle against the secondary effects of her treatments. Cancer has changed her life forever. Meaghan returned to law school and is set to graduate in December 2008.

Without the love, care and attention Meaghan received at Dana Farber Cancer Institute she would not have survived. Because of this Meaghan has dedicated herself to raising awareness and supporting Cancer Institutes. To learn more about Meaghan and her story visit her blog at www.cancerlost.blogspot.com

We at G.T.B understand Meaghan’s story is not unique. There are many men and women fighting battles against cancer. Get The Bean wants to do what we can to help fight cancer. We have decided to donate a portion of our proceeds to various cancer charities.

This is how it works:

  1. Tell us about yours or a loved ones battle against cancer
  2. We will then post your story on G.T.B Fights Cancer Blog
  3. Each month we will pick one story to feature
  4. If we pick your story you get to pick your favorite G.T.B coffee flavor
  5. Next you must pick a Cancer Charity you want G.T.B to donate proceeds to.
  6. For the next year we will donate .50 for every bag purchased of your chosen flavor to your chosen charity.

Wednesday, October 22, 2008

Beating Cancer To The Pass

my story is not your typical cancer story. let me start by being very clear, i don't have cancer and have not battled with cancer personally. my story is about doing what i can to beat cancer to the pass. you see, breast cancer took my mother's life when i was 8 1/2 months pregnant with my son(now 9 1/2) she was the third generation of women whose lives were ended with breast cancer. at the time of her death, my relationship with my mother had been strained. we only spoke every six, eight, ten months sometimes once a year. needless to say, i wish i had gotten the chance to speak to her before she died. i have learned a lot and grown a lot since then. i am now mother to three beautiful children(2 boys and 1 girl). i want to see them grow old. i want to be a grandma to my children's children. in order to do that, i have to live and care for this creation of
myself that God has given me. so, at the young age of 35, i had my first mamogram. ladies, let me tell you that as a woman who has a lot to be scanned, this was not the most pleasant experience. my mammogram came back clean. i do monthly exams and will continue to do so. i don't have cancer and i'm going to do what i can to make sure i take care of myself. i cannot
prevent cancer but i can put myself in a position that gives me hope for a healthy future with my children and my children's children.

carolina van luvender

Monday, October 20, 2008

Please Pray For Margaret Fowler

This is my moms 3rd battle with cancer in 8 years, 8 years ago she was diagnosed with breast cancer, they did a lumpectomy, took 10 lymph nodes out which where not cancer, she had chemo and radiation, 6 years later she was diagnosed with reoccurrence breast to her neck, no surgery because it was too close to her blood vessels, she underwent extremely harsh chemo and radiation once again, than about 4 months ago she got a horrible cough that wouldn’t go away with no medicines, she was hospitalized for 2 weeks and they still found nothing, so one day I asked her Doctor to do a chest ct because I was worried because she has had cancer 2 times, so he did, it showed something on her lungs, so her cancer doctor ordered a pet scan, which confirmed it, than she had a bronchoscope which concluded that it is lung cancer. Her cancer doctor had them to run more tests it is breast to lung and lymph nodes, the cough is from a lymph node blocking her bronchial tubes, so we are doing chemo and radiation once again, they say there’s no cure just a prolonging with chemo. She has been through so much, I hope she can continue to fight it because I don’t know what I would do without mom, and she is my world, my everything, my best friend. I love her so much. Please pray for her, her name is Margaret Fowler.

Sunday, October 19, 2008

A Supporter's Father's Story

It's so long, but I've posted it on my blog. He was in remission 18 months after this and last month we learned that the cancer is back. He just started a new chemo (ICE) last month, as a matter of fact, he drove to Nashville today and will be admitted on Monday for 3 days of inpatient chemo. We are tentatively planning another stem cell transplant in December. It's so fresh on my mind that your site brought tears to my eyes. Thank you for what you are doing. It means a lot.

Here are a few links for you to see our story:




Saturday, October 18, 2008

Our Fourth Cancer Story Entry

I hate going to see the gynecologist, like most women do. I’d gotten lazy since the birth of my last child because I’d had my tubes tied, an ablation done the year before, and I didn’t depend on the yearly birth control prescription, so if I didn’t make it every year, that was just fine because *I* didn’t need to. There’s never been a history of anything being wrong with me or any woman in my family.

In the fall of 2007 I began figuring when the last time I’d had my pap smear done. It had only been a little over a year so normally I’d just forget about it for a few more months. But this time was different. It’s hard to explain but I kept having this great sense of urgency to go get it taken care of. This was my first red flag. I fought it for a couple months before breaking down and deciding to go see a doctor. The one I’d had after having my daughter had moved as had the one that saw me before the ablation the year before. So I went to a nurse practitioner/midwife. She is the one who discovered the problem.

Fast forward a week. I’m sitting in the parking lot, killing time for a few minutes waiting for class to start and my phone rings. It’s the nurse practitioner/midwife’s nurse. She tells me what the pap results said and that I need to go see a doctor. I have HPV and my cells are suspicious. That’s all I got. The word cancer was brought up but she said to not worry yet, to wait and talk with the doctor. It’s not time to panic, but don’t put it off, either. If I had a penny for every time someone said not to panic, I’d be rich. They were able to get me in to see the doctor in a couple days. That was my second red flag. You never get in that quick.

He performed another pap smear and decided to biopsy. I think I lost 5 pounds that week from all the worry. They put a rush on the results and it still took almost a week to get them back. Another red flag was waived when they didn’t wait for the card to come in the mail, they called and said I needed to come in to have a colposcopy done and talk about the results. My mom took off work to go with me to the doctor on the day I went to get the results. I didn’t want her with me, but she wanted to go, so she sat patiently out in the waiting room while I went back and fought one of the biggest emotional battles yet. It was cancer.

Ya’ know how in the movies when someone receives bad news, the camera shows them sitting still while everything moves slowly away, like they’re moving through an emotional tunnel backwards and all the sounds get muffled and their eyes look dazed? That was me. One half of my brain was telling the other half to focus and listen because I know myself, I’ll walk away stunned and an hour later wonder what he said. The other half of my brain pictured my children, my future husband Chris, my mom, my sister and brothers, my dad, the rest of my family and friends. I saw myself sick, having to break the news to them, wondering what would happen if it spread. My clarity came and went. I would go between being able to listen attentively and understand what he was saying to thinking of what would happen if this goes bad.

I picked up my jacket and purse and walked out of his office in stunned disbelief. I scheduled the freezing like he said to. I went out to the waiting room and all I am aware of at that moment is looking at my mom and being sad that I had to tell her the news no parent wants to hear. At that moment, the fear and sadness shifted from myself to her as I whispered, “It’s cancer.” She quickly grabs her stuff, not even taking the time to put on her coat, and said, “Let’s go out to the car.” We get in the car and I work hard to recall all that the doctor had said, knowing I’d missed a lot. My mom is a deeply religious person, but not the hell-fire-and brimstone type. She sweetly took my hand and said she wanted to pray with me, so she did. It was the sweetest, most heartfelt prayer I had ever heard in my life and it brought me to tears. Seeing my mom begin to cry made me hurt for her even more.

I called my boss, barely able to hold it together, and asked if I could have the rest of the day off and told her what the diagnosis was. It was no problem. I then called Chris. He was very quiet and asked if I was okay. Yes, I was. Then mom drove me home. The next couple hours are a blur. I know I looked things up on the internet, shocked at what I read. Shocked at the mortality rate.

That afternoon my middle son had a doctor’s appointment. During this appointment, they found an irregular heartbeat and wanted blood work done. Again, his was expedited. Within 24 hours, our healthy home turned upside down. We get a call the following Monday that his liver wasn’t functioning properly and he’s anemic. I was just a few days away from having the freezing done and now we didn’t know what would happen with Will, they needed more blood work and some tests run. I looked at Chris and told him that if he wants to leave, now is his chance. He didn’t take the out I handed to him (which I’m very thankful for!). I didn’t know how severe my cancer was and now my son was sick. I could handle myself being sick. I can’t handle the thought of something serious being wrong with my child.

They say you’re never given more in life than you can handle. I no longer believe that to be true. At that moment, it was too much. I had never been lower in my life. But at the same time, I now looked at everything through a different mental and emotional lens. I appreciated everything more. I no longer cared about things such as if I have the best clothes, perfect nails, the latest gadgets. Things no longer mattered, the people in my life did. And my life did.

The freezing seemed to be a success and they ended up finding nothing wrong with my son. We got the latest results from both right before Christmas. It was the only present I needed. I didn’t need or want anything else, I had it all. I had struggled through the Thanksgiving holiday but now I was able to enjoy Christmas and what a good Christmas it was! Some say things just work out. Some attribute it to the prayers people said for us. I think it’s both. I’m not a deeply religious person, but I am spiritual and I believe that prayer worked this time.

At the end of March I went back for the 3 month checkup and pap smear. The nurse called and said things were suspicious and he wanted to try another kind of pap smear, so he did. Again I was asked to come in, had a colposcopy done, another biopsy, and asked me to meet him in his office. He said I fell into the roughly 15% recurrence rate. It appears as though it had come back but we needed to wait for the biopsy results to know for sure. We talked about the next course of action. I walked out of there being told the cancer had returned. A week later I get the call saying that it was all clear. So I grilled the nurse asking how it could look like cancer is back but then suddenly there’s nothing wrong? The pap smear wasn’t normal and he saw something on the colposcopy. None of it made sense but she insisted it was fine and I didn’t need to come back until October (it was April by this point, so he put me off for 6 months). I hope she’s right, but I’m not confident.

So here I sit. Seventeen days away from my next appointment, wondering if I shouldn’t find a new doctor, nervous about what will happen, almost convinced that they screwed up the last time. It’s not uncommon for labs to mix up results and specimens. I have yet to make good on the decision to make this my life’s mission, raising awareness of cervical cancer. Everything may not happen for a reason, but I do think that everything that happens should teach us lessons and we should never come out the same. We should never take what we’ve learned and keep it to ourselves.

One thing this experience has done is help me narrow my focus in education. I’m a psychology student. When I started down this path, I wanted to be your typical psychologist. The more I deal with people and read and see what’s going on around me, the more I know my life’s purpose is to help those that are hurting. I want to help others as they go through the most painful and terrifying times of their lives. Everyone should attempt to leave the world in a better place than when they were brought into it. My life will matter. One day my day for being a cancer advocate will come. For now, I’ve come to realize that I must wait my turn. There is simply not enough of me to spread around; but during this time, I am educating myself and finding that my passion for others and for cancer is far deeper than I would have ever guessed. It’s on a small scale now, educating and informing those I know. One day, it will be on a much broader scale.


Friday, October 17, 2008

Third Cancer Story: Sarcoma

In the fall/winter of 2006/ 2007 I started to have frequent UTI's and had never had them before. I had 3 different ER visits for extreme pain and bleeding. My primary doctor decided it would be a good idea to do some further testing to rule out some things. I had a CT of my kidneys, a test for bladder cancer and finally, an ultrasound to look at my bladder and ureters. Well nothing serious was found to be causing my UTI's, but something totally unrelated was found on my ultrasound, which probably saved my life. I had a tumor the size of a baseball sitting on my psoas muscle deep in my abdomen.

That led me to Roswell Park Cancer Institute in Buffalo, NY. Where I met my fantastic surgeon who told me I had Alveolar Soft Part Sarcoma. I had a cancer that made up 1% of all cancers, and I had just turned 19. This cancer also has not had the research other cancer's have, and it was and still is needed. I had radiation, inter-operative radiation, my tumor, psoas muscle, and a bundle of nerves removed, along with my right kidney. It took me a year to fully recover, and I still have nerve pain, numbness, and have lost strength and flexibility in my abdomen. I am currently on a clinical-trial for an anti-angiogenic pill called Sutent. I am still fighting the spots on my lungs, and the 50/50 chance a tumor could recur in my abdomen.

Sarcoma's tend to hit a young population, and be chemo-resistant. This cancer desperately needs more funding and research. I donated my tumor to research, but want to do more!

But right now I feel good, and I am thankful for that. Roswell, along with Memorial Sloan Kettering in NYC have made it so I am still here today.

Thursday, October 16, 2008

Our Second Cancer Fighter Story

My name is Stephanie and I am a 36 yr old mother of three and wife to a super sexy 38 year old man. My hubby is a very healthy guy. He was a competitive body builder in college. He is as strong as an ox to this day and enjoys exercising and eating right as a way of life. You can only
imagine the shock and surprise when he was diagnosed in August with lymphoma (btw..that does not deserve to be capitalized!). He is currently undergoing treatment and will be until February of next year.

We both went through the usual "why, how" questions, but quickly learned to lean more on our faith and trust God. The six months of chemo treatment will be long and rough, as
will the five week of radiation that will follow. But, we know in the end, he will emerge with a clean bill of health. This is an inconvenience, and *not* something that will kick us down.

I am so grateful to have found Meaghan's blog and this site. I am proud to do whatever I can to help raise awareness. I will be a regular customer.

If you are interested, you can see my post about the battle www.ourpieceofquiet.blogspot.com

Wednesday, October 15, 2008

Our First Cancer Fighter Story by Deena

Here is our first Cancer Fighter story entry! Hope you all enjoy:

Why am I so tired all the time?? I exercise every day, eat pretty well, am aware of everything that I put into my body. It must be stress. I work too much, try to do to much, that’s what it is. Ater all, I’m 33, not as young as I once was. I just need to slow down.

Why do I have this blood in my stool? Well, it’s only happened a couple times, it’s probably nothing. Oh, it’s probably just an internal hemorrhoid. I’m only 34 it’s not like I would have cancer or anything.

Why do I feel this urge to go to the bathroom? Geez, the toilet is filled with blood. I don’t have any belly pain, I don’t even have any rectal pain, and my stools seem fine, I probably ate something that didn’t agree with my intestines….yes, that’s it, it was something I ate. I’m only 35 it’s not like I would have cancer or anything. I’m a nurse, I think I would know if I had cancer.

What is going on? Why are my stools becoming pencil thin? Why am I having these gushes of blood and why is my back hurting so badly that I cannot get any relief no matter what I do? Why do I want to sleep all the time and where has my energy gone? Why am I so thin? There is something wrong, I’m sure it’s stress related, after all I’m starting my own business, building a new building, going through a divorce and I’m only 36, it’s not like I could have cancer or anything………..I need to at least get a colonoscopy to see what’s causing this.

Groggy from the Versed and sedation I hear, “draw a CEA stat, get a CBC stat”……what? What? CEA? You think I have cancer don’t you?? She wouldn’t answer me, she said “I will talk to you in my office on Tuesday.” Tuesday? It’s Friday, I can’t wait until Tuesday, “you know I have cancer don’t you?”. She still wouldn’t answer me, and the last thing I told her was, “Don’t waste my time please.”

That was my colonscopy March 9, 2007. The longest weekend ever followed. I knew what was happening to me, I knew it was cancer. I went shopping on Saturday and bought clothes that I would take with me to the hospital for my surgery. I knew the drill. I was a nurse. I was educated and knew the symptoms yet completely avoided reality for at least 4 years……I was my own worst enemy.

The days that followed were like living in another world. How was I going to tell my family? My friends? How would anyone ever love me again in a sexual way after this surgery? How would I even let anyone? What was I going to do living all alone, going through chemo, radiation, and this surgery that I would have to have? I’m too pretty to have cancer, I’m too happy, too healthy, to physically fit, nobody in my family has ever had this. Why me? What did I do wrong?

Tuesday, March 13th I got the official diagnosis. “Rectal Cancer.” “Very large tumor that will require extensive treatment.” “You need to start looking for a surgeon, I can recommend one but you are more than welcome to find one also”. “You will see the oncologist tomorrow, I have set it up for you.” What is happening? This cannot be real, it must be a dream. I have to tell my dad.

I drove myself back to my company office where my dad was. He took one look at my face and knew it was bad. I couldn’t even speak I just cried and he held me and all I could udder was “I do not want to die”, “I’m not ready to die”…..he just held me and cried with me…..this was indeed one of the worst days of my life and honestly everything after this day was not as bad as uttering the words to my dad, “I have cancer.” No child should ever have to tell a parent these words, ever.

I felt like an animal being herded through gates and given commands as to what to do next. I was told where to be, when to be there, and how to go about it. I was never good at being told what to do, I am a natural leader, not a follower so none of this came easy for me. Giving up control over my life was not going to come easy for me, I needed to have some sort of choices, some type of control, just a little, but…..cancer took that from me, at least for the time being.

I was to report on Mondays at 8 AM for my 5FU hookup and wear that for 24 hours a day until Friday morning at 8. Also on Mondays, Tuesdays, Wednesdays, Thursdays, and Fridays I would go for my radiation treatments which only take a few minutes but eventually will wreak havoc on your body…… nobody can prepare you for what will happen during these 5 weeks. Although they try during those ‘mock-up’ radiation sessions where they get you ready for the actual radiation, you are never really ready for the outcome. I did pretty good up until week #4 when the burning got very bad, I could barely pee and having bowel movements was like passing razor blades, the burning from urination was so terrible I asked the doctor to prescribe for me some xylocaine jelly to put on the areas just so I could urinate without crying. I spent more time in the tub than any human being should in an entire lifetime……the cool water seemed to help the burned skin and also help with healing…….

If I just get through this I can get through anything. The 5 week course was over, I got a nice certificate of completion from the staff and I was a free woman for a few weeks until I was okayed for surgery. I found my surgeon, she was at U of M and she was who I wanted to do my surgery. I couldn’t get in to see her so my radiation oncologist made some calls and go me in……..she was going to do it. I had to meet with the ENT nurse prior to my surgery to discuss ostomy placement. I cried and cried during this visit, I couldn’t even look at the appliances and all she kept saying was ‘you are so tiny, where can we place this on your little belly?’ She was trying to be nice but I was so devastated and then she mentioned irrigation. I had no idea of what this was, I am a nurse and have never heard of such a thing. What is this? Will it get rid of the bag? When can I do it? How long after surgery?? I was excited that there was an option out there, finally, something, some hope…….up until this moment I have had no choices and everything that this cancer had done was so devastating and it never got better, at least not until today………

“I will never be able to sit again”…….that was my first thought after surgery. How can this possibly be done to a human being. My butt was sewed shut. She told me she was removing the rectum but I didn’t know my butt would literally be sewn shut. Are you kidding me? When does it end? When will this be over? Did she think because I was a nurse that I knew this? Because I didn’t. Right then and there I knew that patients were never properly educated, we assume they know certain things and patients are afraid to ask questions…..I am living proof. I never asked, mostly because I wasn’t aware I needed to ask……..I will never be the same again.

I cannot lay on my back, I cannot sit on my bed, I can barely walk and I definitely cannot take a shower alone and now I have this huge bag hanging from my belly that I find completely repulsive. Surgeons, residents, nurses, everyone wants to see it and I can barely look at it. How am I going to live the rest of my life with this ‘thing’ on my belly? My clothes are never going to fit right and everyone is going to know I have this……I must stink from it, I know I do. Why has cancer done this? It never ends.

Five days later and I’m ready to go home. I still cannot sit on my butt but I can walk okay and with the pain meds I can do most things. I need to start moving around, doing things, getting better. I was to have a home health nurse visit me, I would be fine. I need to start taking care of this ostomy on my own and I had a personal goal to find the smallest, lowest profile bags that I can find. The post operative ones were not going to cut it for me for very long. My home health nurse had no idea of how to help me with this appliance problem, she simply had not the training or expertise I needed right now and I was frustrated. I was also feeling sicker and sicker over the course of a few days. She assured me I was fine, the incision looked fine that I was still in ‘recovery’ mode. No, I knew something was wrong, I started to have huge amounts of drainage from the wound so I called my surgeon and she instructed me to immediately come back. This was a 3 hour ride. My sister in law came to take me back to Ann Arbor, I laid in her backseat a very sick girl. I just wanted to die. Is this ever going to end? Am I ever going to be normal again? Is this what cancer does? Take you little by little until you just give up?

Abscess. Rectal Abscess. Okay, what? Why? I was very very ill but with a common result of these types of surgeries. Especially in an area that received large amounts of radiation. The tissue is mush.

I went home with a drain in place for about 5 weeks. Finally after what seemed like eternity it healed and I could start my second round of chemo. I had a 6 month course yet to do before my treatment was officially done. I started that in October of 2007 and finished in Febuary of 2008. The second round was every other week for 3 days in a row. In contrast to the first regimen this regimen made me gain about 30 lbs of weight so I was ‘bloated’ as I like to call it. It was a combo of two different drugs and the goal was to destroy the smallest cell that may be floating around……good, kick it’s ass!!

Fast forward to today. I am 8 months post chemo as I write this bio. I am running a 5k next month for charity. I am irrigating my ostomy now and loving it. I can wear a tiny patch on my stoma and wear all my tight clothing and nobody knows. I have more energy than I have had in years and am happily dating and doing all the things that a single, sexy chick should be doing!! My newest goal is to wear a bikini again once I get my muscle tone back! It was a long hard road, one that I don’t care to walk again but along with it came many new lessons. I learned how much strength one can actually muster when you have to. I learned who my real friends were and how much people really do care and how they will rally around when someone is in need. I learned that a person can adapt to many situations and you do it without thinking, just as a natural reflex…..human beings are really amazing creatures and we don’t know what we have, who we are until we are really challenged and I think something like this, a real crisis brought out the best in me!! But I think the biggest lesson I learned was to listen to my body, when it’s calling for help I need to take care of it, this is all I get and I need to make it last until I’m good and ready to let it go!!

Cancer is not a death sentence but it is an order to fight, fight for your life, do not give up without the biggest fight. It’s also a lesson to everyone around you of how precious every day is and what a gift it is….it wasn’t my time and I knew it……I look at every single day as a gift and I will until my time is up, I cherish the little things, the smells, the sunshine and the rain, it’s all amazing to me now and I will never wish away another minute, another hour or another day. What a great feeling to be ALIVE!!