So, its been a pretty uneventful couple of weeks. I had chemo and slept for a week, then got stood up for a date I had, and my bloodwork came back as something being active in my liver and bones....well kind of uneventful. I won't find out until I go back to Texas at the beginning of February if that bloodwork result actually means anything.
So that brings me to the normal flow of my life. The Xeloda makes me so exhausted all the time. I have a couple days where I feel ok but for the most part if I do anything I have to take a five hour nap after. I have started to loose my hair again. I almost look like I have a mohawk...ok..I look like I have a mohawk...there is no almost about it. It is so awful..lol. I have parts of my head that are flowing with hair (mainly the back) and parts that have no hair. I haven't decided if I shave it or not. Most probably the clippers will come out. I look better buzz cut then with this retarded mohawk. I look ridiculous. I wear my wig at all times now..lol. My ex is going to come buzz cut it tomorrow, I will post pics.
On a positive note, I've lost a good 7 inches in my waist. Yay me! Maybe it has a little to do with the fact that everything taste likes cardboard and if I manage to get it down it will then procede to come right back out....not all the time so don't be worried..but often enough I guess lol. I am loving the way I look now so it has helped tremendously with my self esteem. Some of you may think I am nuts for even being excited about the weight loss, but hey, the 80 pounds cancer gave me had to let up sometime. It's just plain rude that with all the crud I've had to go through that I had to blow up like a balloon so people didn't even know who I was when I saw them. Now try that on to your self esteem...how would that make you feel?
Did I tell you guys that I finally found a wig that I absolutey love? It came from the Greater Baton Rouge Flea Market on Airline Hwy going towards Gonzales. This awesome lady opened up this shop with wigs because her mom had cancer. The wig was only $35! It looks so much better then my several hundred dollar wig that I got when I first got cancer. I wore that wig twice maybe. People complement me on my hair all the time...you should see their faces when I tell them they can get their own hair like this at the flea market for $35...lol. Yes I do say that. http://www.fleamarketoflouisiana.com/
So, sometime last year my doctor wrote me a prescription to no longer watch anyone's kids but my own. To rest and take care of myself. It is still on my fridge, just as a reminder. Well, the other day she wrote me a prescription to stay awake more often, get out the house, and to do something. It is now on my fridge right next to my other prescription. The latter prescription is a slight contradiction compared to the other one. I wonder if she realizes that...lol. Don't worry I will point it out when I go on Friday.
Today is a better day then most days, thank God! I appreciate this day so much, because I know today I start chemo and this whole week will be a blur and I won't have any recollection of this day or any other day this week by Sunday. It sucks. Sometimes I can make myself get out the house during chemo week, only if whoever wants me to come with them comes over, gets me dressed, well makes me get dressed, and drags me out of the house. If I stay on top of my medicine I can manage to get around, stay awake, and look half way decent. Don't ask me to remember anything that happens though or you will be very disappointed. Sorry I can't help it. Its just something the people I love half to get used to and most of them have, not all. Some hold it against me, and I understand that they have no idea how my life goes and how I feel, and how my life really is because when they see me I put on a happy face for them. You would think me passing out in five minute intervals would clue them in but like I said, sometimes people just don't understand. No matter what is said about me to my face or behind my back I still love all of them and when they are willing to understand I will be here. The chemo messes with my memory, my attitude, my consciousness, and so much more. Its not just the chemo, its the amount of chemo I have received in the past four years. Most of it being in the past 14 months. If you ask a first time cancer patient about how they feel during chemo they will tell you how they made it through it, but it was hard. Ask them to imagine continuing the treatment for four years and then 14 months of hard chemo in a row, they would be horrified. I promise. I would have been if I had known after the first time I had chemo that I would still be doing this after four years. I would have not been able to comprehend it. I make my way through every day the best that I can. Some days worse then others.
So enough of that noise. Like I said today is a good day and thats all I need to focus on. I am so lucky to be here after all these years. This June is my 5 year cancerversary. A milestone in the cancer world. A day that is a miracle in my world. I am so blessed to have all the love and support from all of you. All of you have been my angel at some point or another. Thank you.
Christmas was absolutely amazing. Madisyn had one of the best Christmas's ever. Thanks to all of you. I didn't have to spend a dime. Fortunately, because I was sick and never left the house anyways. Plus money is an issue. After bills and food...well food for the first week or two...there is nothing left. We stay happy and fed though. Some wonderful friends bring us food plus some even strangers bring us food from our church...they aren't strangers anymore of course...I love all of you! One girl from our church bought both me and Madisyn new bedding...the best bedding in the world....no need to get out of bed anymore...lol.
Well I talked your ear off so I will stop now....every one check out the Amazon search box on my page....go shopping! Love you all!
Shannon
Welcome to my blog. In this blog I am going to blog about anything and everything. I am 32, a single mother to a 12 year old firecracker, and a breast cancer survivor. We have had a long battle in her short 12 years. The never ending baldness of my head makes one of them slightly obvious to an outsider. Nonetheless, Madisyn and I have been blessed by God to have such wonderful supporters in our life. Only because of you have we made it this far and we aren't stopping here!
Showing posts with label xeloda. Show all posts
Showing posts with label xeloda. Show all posts
Wednesday, January 20, 2010
Monday, December 21, 2009
The end of 2009
It has been a long time since i have blogged. My previous blogsites: caringbridge.org/visit/shannonbridges, carepages.com/carepages/shannonsfight
Lately I have been looking back over the past year. The end of the year is always a time to reflect on the past and look forward to the future. There is the wonder, the hope, the promise of better to come. The new year, another chance to make everything right.
When I think back on my past year, the year starting January 1, 2009, it feels like yesterday. In January I was finishing up three months of chemo that had started in November. In October of 2009 I had surgery to remove the remaining tumors that had resisted the clinical trial I participated in for nine months of 2008. Two tumors in my neck had responded to the point of not being visible anymore. The other 12+ tumors were still hanging around, fighting away all the medicine I was on. I spent the bulk of 2008 traveling back and forth to Houston, Texas to receive treatment in a clinical trial that was promising to kick my cancer's ass since Herceptin had failed the first time. After months of non-response, we scheduled surgery. In surgery the plan was to remove the remaining black blobs on my ultrasound. In the midst of Hurricane Gustav that rattled Baton Rouge and Houston, I was battling cancer, my fourth recurrance-or to use an easier term, metastatic breast cancer. Every time the cancer has gone away, been taken out, killed off by the poisens running through my body, or been nuked by radiation, every time, it had returned. This surgery was to be a new beginning for me. A chance to walk forward and never turn around to remember the past......again. Surgery number thirteen.....or wait twelve...wait, we don't include biopsies in this number do we? Whatever number it was, I was ready. Then came Hurricane Gustav. Surgery cancelled. Crap. A couple weeks later there I was, finally, the wait would be worth it.
Post op, November 2008. Ultrasound......Oops...tumors escaped from surgery. These little jerks managed to escape the surgeon's grasp. Two little black blobs sat there starring me in the face. What happened? How? With a don't dwell, move forward attitude we started treatment...again. I was put on two drugs, one called Taxol and Herceptin. I had been on Herceptin before for years and it was just a new way of approaching the Herceptin therapy in hopes that this time it would work. Treatment every week. Around this time I decide to go vegetarian.
So there I am, January 1, 2009, most probably nauseas, vomiting, constipation, diarrea, and speaking backwards. Yes thats what I said, my speech is retarded. Brain scans show nothing so it is just the side effects of the medicine. At some point I decide on more of a vegan form of diet. In February I had to return to Houston for a restaging. We got to do a million tests to see how the chemo is working, and then decide on therapy. Outcome was growth in tumors. Found a new one that they thought was probably not new, just a whole lot bigger and visable now....ok...whatever. So, we changed our treatment plan. This time to Taxol and a drug called Carboplatin, but this time i only had to go every three weeks. Yay! There is something positive! I speak with the Alternative therapy doctor there, learn some more about wheat grass and stuff, only to then find out that I can't have soy. My cancer is estrogen receptor postive...translation: estrogen makes my cancer grow....outcome of this appointment: no more soy....results of this outcome: no more vegan. There was also a major sick time in which I found out I was getting worse side effects and stuff because I wasn't getting enough nutrients with the vegan diet. You've got to work for your nutrients in that diet anyways, and to switch to that kind of diet while going through cancer treatment was probably stupid anyways. I would have to take major supplements if I wanted to try it again, so needless to say I haven't gone that route again yet.
So, there I was vegetarian.....wait no..vegan...crap....forget that...vegetarian...dangit....whatever my body will allow me to eat without making me vomit.
Through all these years of treatment, surgeries, radiation, and everything else under the sun being but into my body I was living with my parents. Not that bad of a setup. At first me and Madisyn had to share a room and a bed. Then they let us have our own rooms. Woo-Hoo! But seriously, I was a twenty something mother living with...her parents. The help was awesome. Mom would do my laundry, and eventually I let her do it without telling her she didn't need to do it...I learned to just accept the help. If I was sick mom would get her up and off to school. Good thing because by the time I started the chemo in November I would let her do it alot. Now, of course, that did not go over to well. There was alot of fighting about Madisyn, alot of fighting about the house, and alot of fighting about, well everything.
I am not sure if everyone gets a time in their lives where they get to find out who their friends are and how many friends they actually do have. I have been so lucky as to have been shown that over and over and over again. In February of 2009, I learned again. Through the magic of blogs through, facebook, myspace, caringbridge.org, and carepages.com and emails through all of my accounts, a couple of my friends accounts two of my friends found a place, raised the money to pay six months in advance in rent, and got me and Madisyn a place of our own. We hadn't lived on our own since February of 2006 when we moved home after I left my husband. With donations from people from freecycle.com, different stuff from different people, and my friend's used furniture store that closed, my place was furnished. No, maybe it didn't all match, but it was all ours. April 1, 2009 our place was ours. Right after we moved in I got to go back to Houston for another restaging. This time....better news....no change...yes, that is good news...this means no growth...so I stay on Carboplatin and Taxol.
In June of 2009 I return to Houston. Because of the side effects that I started having...numbness in hands and feet, potentially could be wide spread and permanet, we change chemo and schedule surgery. I start on Gemzar and Herceptin. Yes, somehow I get put on Herceptin again. I don't know why we decided to do that. I think it was because we just needed something for me to be on before surgery....but seriously I don't remember. We schedule for August of 2009. I return to Houston in July for some more tests. No change in tumors, but I get diagnosed with Stage 1 heart failure. Great. Lets add cardiology to my regular doctor appointment list.
When I return for my pre op appointments I get the go ahead from cardiology, and every other doctor possible. Finally I go and get my ultrasound. As always I make them check anything that I don't like in my chest. Yay! The lump that bothers me is not cancerous! Woo-Hoo! Oh crap, they want to check something they find will looking at my noncancerous lump. Embedded in my chest and growing into my right reconstructed breast is.....yes...cancer....again. In one of my new boobs. What???
Ok, so, yes this happens. I new it was a possibility, and I knew the very little percentage it was that actually had this happen...so yes....you are right....I should have seen this one coming. Only me. That has been my motto with this cancer journey. If there is the slight possiblility just know that with me, it is a large possibility.
What does this new tumor mean to me? No surgery. Cancelled. "Does not respond to surgical intervention."
Now what? They speak to me about a stem cell transplant. Ok, how much....$200,000....paid up front....HA! My $800 in disability will not cover that, sorry! So we switch to a drug called Xeloda and Tykerb. Both are oral drugs....Yippeeeeee! I start off with 13 pills of chemo a day for one week, then just the five Tykerb for one week, repeat. Bad bad side effects. Worse chemo ever. October of 2009 I have my first (and only at this point) seizure. Weird experience to say the least. I finally find a doctor I like and get on the right medicine in December. On November I return to Houston for restaging.....................................CANCER RESPONDS!!!!!!!!!!!!!!!!!!!
The wait has definately been worth it to hear those words. They lower my dose to only seven Xeloda a day and four Tykerb one week, then a week of only four Tykerb, then repeat.
That brings us to now. Days before Christmas. Reflecting. Where did my year go? Gone to cancer, once again. Here's to 2010.
Lately I have been looking back over the past year. The end of the year is always a time to reflect on the past and look forward to the future. There is the wonder, the hope, the promise of better to come. The new year, another chance to make everything right.
When I think back on my past year, the year starting January 1, 2009, it feels like yesterday. In January I was finishing up three months of chemo that had started in November. In October of 2009 I had surgery to remove the remaining tumors that had resisted the clinical trial I participated in for nine months of 2008. Two tumors in my neck had responded to the point of not being visible anymore. The other 12+ tumors were still hanging around, fighting away all the medicine I was on. I spent the bulk of 2008 traveling back and forth to Houston, Texas to receive treatment in a clinical trial that was promising to kick my cancer's ass since Herceptin had failed the first time. After months of non-response, we scheduled surgery. In surgery the plan was to remove the remaining black blobs on my ultrasound. In the midst of Hurricane Gustav that rattled Baton Rouge and Houston, I was battling cancer, my fourth recurrance-or to use an easier term, metastatic breast cancer. Every time the cancer has gone away, been taken out, killed off by the poisens running through my body, or been nuked by radiation, every time, it had returned. This surgery was to be a new beginning for me. A chance to walk forward and never turn around to remember the past......again. Surgery number thirteen.....or wait twelve...wait, we don't include biopsies in this number do we? Whatever number it was, I was ready. Then came Hurricane Gustav. Surgery cancelled. Crap. A couple weeks later there I was, finally, the wait would be worth it.
Post op, November 2008. Ultrasound......Oops...tumors escaped from surgery. These little jerks managed to escape the surgeon's grasp. Two little black blobs sat there starring me in the face. What happened? How? With a don't dwell, move forward attitude we started treatment...again. I was put on two drugs, one called Taxol and Herceptin. I had been on Herceptin before for years and it was just a new way of approaching the Herceptin therapy in hopes that this time it would work. Treatment every week. Around this time I decide to go vegetarian.
So there I am, January 1, 2009, most probably nauseas, vomiting, constipation, diarrea, and speaking backwards. Yes thats what I said, my speech is retarded. Brain scans show nothing so it is just the side effects of the medicine. At some point I decide on more of a vegan form of diet. In February I had to return to Houston for a restaging. We got to do a million tests to see how the chemo is working, and then decide on therapy. Outcome was growth in tumors. Found a new one that they thought was probably not new, just a whole lot bigger and visable now....ok...whatever. So, we changed our treatment plan. This time to Taxol and a drug called Carboplatin, but this time i only had to go every three weeks. Yay! There is something positive! I speak with the Alternative therapy doctor there, learn some more about wheat grass and stuff, only to then find out that I can't have soy. My cancer is estrogen receptor postive...translation: estrogen makes my cancer grow....outcome of this appointment: no more soy....results of this outcome: no more vegan. There was also a major sick time in which I found out I was getting worse side effects and stuff because I wasn't getting enough nutrients with the vegan diet. You've got to work for your nutrients in that diet anyways, and to switch to that kind of diet while going through cancer treatment was probably stupid anyways. I would have to take major supplements if I wanted to try it again, so needless to say I haven't gone that route again yet.
So, there I was vegetarian.....wait no..vegan...crap....forget that...vegetarian...dangit....whatever my body will allow me to eat without making me vomit.
Through all these years of treatment, surgeries, radiation, and everything else under the sun being but into my body I was living with my parents. Not that bad of a setup. At first me and Madisyn had to share a room and a bed. Then they let us have our own rooms. Woo-Hoo! But seriously, I was a twenty something mother living with...her parents. The help was awesome. Mom would do my laundry, and eventually I let her do it without telling her she didn't need to do it...I learned to just accept the help. If I was sick mom would get her up and off to school. Good thing because by the time I started the chemo in November I would let her do it alot. Now, of course, that did not go over to well. There was alot of fighting about Madisyn, alot of fighting about the house, and alot of fighting about, well everything.
I am not sure if everyone gets a time in their lives where they get to find out who their friends are and how many friends they actually do have. I have been so lucky as to have been shown that over and over and over again. In February of 2009, I learned again. Through the magic of blogs through, facebook, myspace, caringbridge.org, and carepages.com and emails through all of my accounts, a couple of my friends accounts two of my friends found a place, raised the money to pay six months in advance in rent, and got me and Madisyn a place of our own. We hadn't lived on our own since February of 2006 when we moved home after I left my husband. With donations from people from freecycle.com, different stuff from different people, and my friend's used furniture store that closed, my place was furnished. No, maybe it didn't all match, but it was all ours. April 1, 2009 our place was ours. Right after we moved in I got to go back to Houston for another restaging. This time....better news....no change...yes, that is good news...this means no growth...so I stay on Carboplatin and Taxol.
In June of 2009 I return to Houston. Because of the side effects that I started having...numbness in hands and feet, potentially could be wide spread and permanet, we change chemo and schedule surgery. I start on Gemzar and Herceptin. Yes, somehow I get put on Herceptin again. I don't know why we decided to do that. I think it was because we just needed something for me to be on before surgery....but seriously I don't remember. We schedule for August of 2009. I return to Houston in July for some more tests. No change in tumors, but I get diagnosed with Stage 1 heart failure. Great. Lets add cardiology to my regular doctor appointment list.
When I return for my pre op appointments I get the go ahead from cardiology, and every other doctor possible. Finally I go and get my ultrasound. As always I make them check anything that I don't like in my chest. Yay! The lump that bothers me is not cancerous! Woo-Hoo! Oh crap, they want to check something they find will looking at my noncancerous lump. Embedded in my chest and growing into my right reconstructed breast is.....yes...cancer....again. In one of my new boobs. What???
Ok, so, yes this happens. I new it was a possibility, and I knew the very little percentage it was that actually had this happen...so yes....you are right....I should have seen this one coming. Only me. That has been my motto with this cancer journey. If there is the slight possiblility just know that with me, it is a large possibility.
What does this new tumor mean to me? No surgery. Cancelled. "Does not respond to surgical intervention."
Now what? They speak to me about a stem cell transplant. Ok, how much....$200,000....paid up front....HA! My $800 in disability will not cover that, sorry! So we switch to a drug called Xeloda and Tykerb. Both are oral drugs....Yippeeeeee! I start off with 13 pills of chemo a day for one week, then just the five Tykerb for one week, repeat. Bad bad side effects. Worse chemo ever. October of 2009 I have my first (and only at this point) seizure. Weird experience to say the least. I finally find a doctor I like and get on the right medicine in December. On November I return to Houston for restaging.....................................CANCER RESPONDS!!!!!!!!!!!!!!!!!!!
The wait has definately been worth it to hear those words. They lower my dose to only seven Xeloda a day and four Tykerb one week, then a week of only four Tykerb, then repeat.
That brings us to now. Days before Christmas. Reflecting. Where did my year go? Gone to cancer, once again. Here's to 2010.
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