On Sunday July 22nd it was my anniversary for 8 years of remission from Non-Hodgkin's Lymphoma. I was diagnosed in the early part of February 1999. I had just turned 24 less then a month before and I had now clue. Today 8 1/2 years later from diagnosis I am living proof that even in the worst case scenarios there is still hope.
When I was first diagnosed I was in stage 4 cancer with a tumor the size in my chest the size of a basketball. It was attached to my lung and possibly my heart. I remember the weeks leading up to it very well. I don't remember the 3 weeks after I was diagnosed. I remember Melissa moving here (finally) right before my birthday. I remember not feeling right for a very long time. I was working for my father and I was working in an environment that was not the best. I was working at his and my step mother's flower stand in South Station, right in front of the doors. The problem with this was that you'd be warm for 5 minutes and then the doors would open and it would be cold, how does your body acclimate to those conditions. I was setting up the stand and breaking it down 6 days a week. I was always on time and I always worked hard, of course if you ask my father I never worked enough. I worked 10-12 hour days and I was strong, and skinny. But then I started to get tired a lot, and I started to have problems with getting there on time and just not feeling good. This started a few months before in the end of fall beginning of winter. I remember calling my mom and saying, I just don't have energy anymore, I just feel blah all the time, you know me I am never late and now I can't seem to just get up.
Don't get me wrong I was 23 and I was going out, but you know around October of 1998 I stopped going out as much as I used to, I just didn't feel that great. Sure I still went out, but people would say, "want to go hang out tonight?" and I'd reply, "nah I'm not feeling well." But there wasn't anything specific wrong with me.
Now I realize the tumor was starting to form and it grew so fast. By January of 1999 I was having problems breathing and I was getting skinnier and skinnier, I remember at one point I could actually see my heart beating through my chest, the skin was beating, that was because the tumor had pushed up my heart. Now you would think at this point I would've thought this isn't right, but NO! not me, I said to Melissa, "look at this, isn't that cool?" I know I know WARNING WARNING that is not normal, but what 23 year old thinks something is wrong. But then I started to cough, and I started having trouble breathing. I remember saying to people "I can't breathe out of my left lung and I feel something in my chest, like if I could reach down and grab it and pull it out." I would try to cough it up thinking it was flem. One day it was cold out and I had gone to the store and when I climbed the steps up to my apartment I just about collapsed, I couldn't breathe and the lack of oxygen with the cold outside pretty much almost made me black out.
I remember going to the doctors, a couple of times when the cough started. She thought I had bronchitis which made sense I usually got bronchitis around the winter time, so my doctor gave me a prescription and told me to rest.
Oh I forgot that right around the new year my father and I had another blow out and he fired me, because I was lazy and I didn't want to work. So, now I'm out of a job and I'm not feeling right. The antibiotics are doing nothing and the cough is getting worse and I'm still not breathing well. I go back to the doctor and she says I sound like I have asthmatic bronchitis, she gives me cough syrup with codeine but still it doesn't help.
This part I only recently remembered, like a passing thought, I took a taxi somewhere because it was cold and I think snowing, I was having a hard time breathing and the cough was just horrible by this point. I'm sitting in the back hacking up a lung and the cabbie asks me if I'm okay. I said to him, "Yes I just have asthmatic bronchitis thank you."
He says, "be careful I had bronchitis and it turned into pneumonia, you should get an x-ray because it may be that."
I told the cabbie, "you know I didn't think of that, thanks, if it doesn't get better in the next day or two I will go."
I think that was a Monday or Tuesday, on Wednesday night I coughed all night and actually kept poor Melissa up as well, then I made a decision on Thursday morning to go to the hospital that night after my bar tending class. (I was going to school to get certified). I asked Melissa if she would go with me and she said, of course, I called my friend Wayne to see if he would pick us up from St. Elizabeth's that night. He said he would.
I go to class and meet Melissa at the T and we head over to St. Elizabeth's Hospital, I check in (thank god I still had COBRA from my old job at the law firm it was a stipulation I had when I agreed to work for my father). I tell the triage nurse what is going on and that I had been to the doctor but just wanted to get a chest x-ray to make sure everything was okay.
We wait and I finally go in for the X-ray, I go back to the waiting room and we wait and wait, Wayne finally comes and we tell him that I still have not seen the doctor so him being the great guy that he was, he runs out and gets us some Burger King. Finally the doctors are ready to talk to me. I go in the back and they say to me, "we see a mass on your chest, it is probably something that you have had your whole life but we want to admit you so we can run further tests and take a CT scan."
I remember asking them all kinds of questions, but I don't remember them saying much to me, I know they never used the word cancer. I go back out to Melissa and Wayne and tell them what they said, I say to Melissa I should probably call my father, and let him know, but we weren't talking so I called my step mother Jayne. I told her where I was and why and what the doctors said. At this point it is like 9pm I have to wait for a bed. I call my mom collect (oh this is all before I had a cellphone good ol' pay phones) but she wasn't home so I try her friend Penny. I tell Penny what is going on and she says she will let my mom know. At this point I am still very calm we are laughing and not thinking CANCER, at least none of us wanted to say it. About an hour later in walks my father, we were sitting playing cards or something and he says, "hi" I said, hi back now we hadn't spoken in about a month. He asks what is going on and I tell him. He has this look on his face, neither one of us says much. They find a bed for me and I get myself all set up, Melissa offered to stay with me but I tell her its okay just go home and get me some stuff for the next day.
Friday I don't remember anything, from what people tell me, early Friday morning they take me down for a CT scan and immediately after the scan they rush me into the OR because my left lung was collapsed and filling with fluid and my heart was so engorged from fluids that if they didn't drain it my heart would have probably imploded or my lung would've drown me. At that point they take a biopsy and I find out I have stage 4 Non-Hodgkins lymphoma with about a 15% chance of survival.
Come to find out if I hadn't gone to the hospital when I did I probably wouldn't have made the weekend, because like I said my heart would have imploded or my lung would have caused me to drown, you know I think back and realize that cab driver saved my life, tell me that wasn't my guardian angel, and my human angel was Melissa, she came to live here about 3 weeks before I was diagnosed I truely believe that someone above sent her to me when I needed her the most, because she was there through it all she took such good care of me. I will write about all that soon enough I promise. Thanks again Melissa
My mom flies out from Phoenix and decisions need to be made. I was in the ICU for a short while after surgery and I guess the doctors told my family that even if they tried chemotherapy it might not work because if the tumor is attached to my heart, the chemo could shrink the tumor but that might make the tumor tear my heart. Not a good thing to tell my mom at that moment. What to do, luckily my primary doctor came and found the best doctor EVER. We decided to transfer to Brigham Women's & The Dana Farber Cancer Institute, I meet with my new doctor David C. Fisher, and what a difference he was. I remember him saying, "this is going to be hard and if you are willing to fight I think we will be able to help you." I went from doctors telling me that I probably wouldn't make it, to a doctor telling me he has hope.
My prognosis was still not good but he gave us hope, I still had only a small chance of survival but we were going to do everything there was to do. My treatment was layed out for me, 6 sessions of CHOP chemotherapy if that didn't work then we'd try a Autologous Stem Cell/Bone Marrow Transplant (AutoSCT) (please do not make nasty comments about stem cell transplants here, my own stem cells and bone marrow were used not an embryonic stem cell transplant this is not the place you can leave an opinion I don't mind). Then we would do a months worth of radiation. And that's exactly what I did, it was probably the hardest time in my life and hardest situation I have ever been in, but you know what I am a fighter and I truly believe that 80% is mental and 20% is medicine... well to a point, if you do not fight and want to live then the medicine cannot do their jobs. I also have to say that I am a very lucky person, my friends and family rallied around me and were there. I met some great people out of this and am thankful everyday.
This past Sunday we celebrated 8 years of remission, my mom and Melissa threw me a luau and it was so much fun. I will post about that next (this is long enough). Here is a picture of me right before I went in for my stem cell/bone marrow transplant. This is a picture of me and Steve at the hospital. 
Tuesday, July 24, 2007
8 Years
Friday, June 29, 2007
Friday Picture Day: The Girls on New Year's Eve 1999
Today's picture (though not the best quality, taken w/disposable camera) is my friend Alyssa, Melissa and myself at a New Year's Eve party in CT at this guy Donnie's house that Melissa and I met when we went on a cruise the November before.
That was a great cruise it was to celebrate my finishing of all treatment for cancer. WOO HOO!! There were three of us that went, Adrianna, Melissa & myself, the cruise went to Cozumel, Grand Caymon & Jamiaca, such a needed vacation after the year I had had and to share it with close friends was perfect.
On that cruise we met a whole bunch of people, and one was this guy Donnie and his friends who lived in CT. We got to know them and realized that we didn't live to far from them and after the cruise I still talked to Donnie after the cruise, when it got close to New Years he told us he he was having this big formal New Year's Eve party to celebrate the new millenium and wanted us to come. Unfortunately Adrianna couldn't make it but Melissa & I could and then we invited Alyssa too.
Now what is funny about this story, is that Donnie gave me directions to his house (which seemed simple enough) he told me to go on this highway and then that one, turn here... one of those highways was 91 South (91S) well I wrote this all down but my S sort of looked more like a 5... needless to say we were looking for 915, and we stopped and asked and everyone kept saying 915 I don't know about any route or interstate called 915 (hey at least we asked men would've kept going until they hit NY or fell off the map all together). Anyway, about an hour into looking for 915 I look at my note with the directions and I say, "Oh crap!"
"What?" Melissa asks (she is driving)
"You are going to kill me." I say sort of trying not to laugh or cry.
"What???"
"Um, that isn't a 5 that is an S we need to look for 91 South."
"Uh Crap! I think that was back a ways." Melissa replies in a not so amused voice but still cool.
Alyssa is sitting in the back and she just starts to laugh. Oh did I forget to mention that we took my fathers van for the trip and it had no shocks that was one bouncy ride.
So I look to see where we were and looked on the map and realize we are about an hour off.
We turn around and call Donnie and he says no worries (we were getting there really early anyway and staying over).
We finally get to Donnie's house and park, get ready for the party and have a great time. It was a definite wild night, just ask Melissa. Alyssa, Melissa and I had a blast and he was a great host and threw an awesome party. It was a great way to ring in the new year, even if I did get us lost. Unfortunately after I moved to FL we lost touch (Donnie & I not the girls). But we have a great story to laugh about, actually when Melissa and I went to Six Flags we had to get on 91S and I say, "OMG that is the road we were supposed to get on when we went to Donnie's holy shit we were SOOO OFF!! " We went so far the wrong way that night we actually had to get on 91N.
Tuesday, May 1, 2007
Me & Steve, Recovery Party 1999
I met Steve in the Spring of 1999 right when I was going through chemotherapy for Non-Hodgkin's lymphoma. I remember the night well. My friend Melissa and I were out at the Bell in Hand trying to keep things as normal as possible for someone in my condition.
The Bell in Hand was a local bar and I knew the bartender well there, so we went for a couple of drinks (I don't think I really drank, chemo and alcohol don't mix very well). It was a good night, a good week, it was the week that I felt the best in my 3 week cycle of chemo. The first week days 1-7 were usually pretty good, days 8-14 not good, and 15-21 were recovery days, to get strong enough for the next batch. So if I wanted to do something and pretend for just a little while that I wasn't fighting for my life, it was usually during that first week, or end of the 3rd week.
I remember sitting at the bar, and just smiling and talking and feeling like there is so much I have and so much I could lose. I was talking to EVERYONE, and I mean everyone, didn't matter who they were, I started a conversation with that person. Well I kept noticing this hot guy with a hot body walking up to the bar and getting drinks, so me being a bit off, since I felt like I had nothing to lose anyway, says to him. "You have a hot body."
He stops, turns and says, "Thank you"
"No problem, just wanted to let you know, but I'm sure you realized that already".
"No, not really, I've been trying to work on my body more."
"Well, it shows" I reply.
I think I have his attention now, he sits down and we start chatting.
"I like that you just said that, it's refreshing when a girl approaches a guy, shows that you have confidence," he says.
"Oh well, I don't know about that, but I'm in a good mood, and I figured what did I have to lose, so why not."
We proceed to talk and get to know each other, and I think he's a pretty cool guy. At this point he has absolutely no idea that I'm sick or that I'm even wearing a wig. Melissa who was with me, totally gives me the thumbs up, and thinks he's pretty cool too.
It's getting late and the bar was closing but we were having a good time and weren't ready for the night to end. Melissa and I decide to go with Steve and get a bite to eat and then we end up back at his house (get your mind out of the gutter nothing happened). I remember sitting in his living room watching a comic on TV, that comic was Eddie Izzard the cross dressing British comic, we were laughing and just having a good time. Then he puts his arm around me and tries to play with my hair, and I freak.
"Don't touch my hair!!!!"
"Um, okay???" Looks at me like I'm insane.
"Ah ah well um, it's a wig." I stutter, (great now I have to explain otherwise he's going to think I'm a psycho).
"Oh I didn't realize"
"Well, it's a bit more complicated then that..."
"What do you mean?"
"Um, well I don't have any hair underneath, I well, um, well I have cancer and I'm going through chemo right now and it's all falling out."
This was before I decided to shave the rest of what was left of my hair, so if I took the wig off, I looked like a balding middle aged man (no offense guys). But once I shaved my head, then I hardly ever wore that wig.
Anyway, Steve the nice guy that he was, didn't freak out and run the other way, he was sincere and asked me what was going on and how I was doing.
I told him everything and he just listened and asked questions, we started dating after that and he was pretty great. But things got really weird when I had to go through my bone marrow (stem cell, my own stem cells people, not embryonic ones) transplant. I think it was too much for him, and he had a weird sense of humor, but then again, how do you deal dating a girl that you weren't sure was going to live. It had to be hard on him and in the end it was best that it didn't go too far. He had his issues and I just didn't have time to deal with them right then, and that was fine. But I am glad I met him and dated him for the short time I did, it made me feel like I was normal, that I wasn't so sick, and it felt good to have him there. My friends and family were amazing through my illness, I was very lucky to have the support I did when I was sick.
Steve and I stayed in touch for a while, but once I moved I lost touch, I know that he met a nice girl and was very happy. Thank you Steve for making a girl who felt so ugly and scared feel beautiful and confident during a time when it was very difficult to feel beautiful.
Monday, April 16, 2007
Marathon Monday
UPDATE: Fulvio has finished the race and he did DAMN GOOD. See below for his stats.
Today is the Boston Marathon and I have a very special bond to this marathon. I have someone running for the lymphoma/leukemia fund and he is running in my name (and others as well who have either won or lost the battle with these 2 diseases).
His name is Fulvio #20867 and if you want to see how he is doing, you can track him at the Boston Athletic Association's website. You just have to enter in Fulvio's number and you can see how he's doing.
Fulvio ran this marathon last year as well, and it brought tears to my eyes, to think that there are people out there that care so much for me. Fulvio works with my mother and he is an amazing guy. I thank you so much for doing this again this year Fulvio and I wish I could be there at the finish line to give you a GREAT BIG HUG!!!
You are an inspiration and I wish you good luck today, because I know how hard it is to run on a clear day and today the weather is BAD, rain, wind and cold. Please be careful.
Thanks again!
#20867, Fulvio 48M,
STATS:
5k - 0:25:35
10k - 0:50:02
15k - 1:14:25
20k - 1:39:07
Half - 1:44:26
25k - 2:03:40
30k - 2:30:17
35k - 2:57:49
40k - 3:24:41
Pace - 0:08:17
Official Time - 3:36:51
RANK
Overall: 7191
Gender: 5786
Division: 2275
Not bad at all I have to say, considering the weather he did FANTASTIC. Thanks again Fulvio you are the best, I appreciate you doing this for me and for others who have battled lymphoma or leukemia. Maybe someday we can eliminate Cancer all together, with people like you and others who give up so much of their own time and for the people who sponser and donate. THANK YOU FROM ALL OF US.
Wednesday, February 28, 2007
Normal Echo
So this is an Echocardiogram of a normal functioning heart and guess what, that's what my heart looks like.
I went today to visit with my cardiologist and he said that the rest and stress echo I had a couple of weeks ago came out perfect. He actually said that my heart was functioning better then it did when he first saw me about 7 years ago.
All I have to say is WOO HOO!!! PEOPLE!!!! WOO HOO!!!
Some of you may know that I've had some lasting effects because of my cancer and one of those is that I have a mild case of Cardio Myopathy, which I take a little pink pill each day to make sure my heart works properly. Well today, my doctor said it was, it was working better then before. I am so thrilled and huge weight has been lifted.
Next is the Breathing Tests sooo much fun.
Tuesday, February 6, 2007
Echo Echo Echo
So, as I mentioned I am a cancer survivor and today I had to go and do a rest echo & a stress echo. I was very nervous today about these two tests. Normally my annual testing doesn't really bother me anymore. I don't worry about my cancer coming back like I used to. I don't worry about my lungs, my thyroid or hormonal problems, but when it comes to my heart I get nervous.
This last year has been a very crazy year. I have gone from a very hard, stressful life, to a good, fun, looking at the glass half full life. I am happy to say that I feel better about myself, and my health is better then it has been in a long time. But that doesn't mean I still don't freak out a bit (okay A LOT!!! I did mention I'm over-dramatic) about this test. So last night needless to say I did not get much sleep, my mind was not really at the things I needed to get done at work. I got most of everything done, but of course forgot to email the one document I needed to do before I left (sorry JM).
But now the echoes are done, and I feel better about doing them. The stress one was a new one and it is just like they show on TV, I was hooked up to a monitor and they made me get on a treadmill (Do they not know I hate to exercise) it was easy at first, slow speed, not too bad of incline but by the 3rd level I was completely out of breath. Not because of the speed but the incline was high, I felt like I was climbing a big hill, and unfortunately my lungs just can't hold that (I only have one that really works well for those that don't know). So I did the best I could and the techs said that they got what they needed, and then I did my rest echo, much easier.
I should get the results in a couple of days. I'm not as nervous now that it's over, I still worry that from my poor eating habits, the stress in my life and the possible side affects caused from chemo and radiation can do to my heart. So far 8 years later, its taken a lickin' but it keeps on tickin' and I am not limited with anything that I do. Next up, a breathing test, a mammogram (so looking forward to getting my boobs squished and turned) and a few other things. But it's all good, because I'd rather have to do my annuals then not because I didn't make it to my next birthday. TAKE THAT CANCER! 8 years and still counting. I will tell you more about my cancer and how, when and what I did when I was diagnosed and the treatments I went through.
