Hello! I haven't written in a while. My last chemo on Aug 19th went well. On the last day they have you read a saying and ring a bell and the nurses cheer. My sister brought me Chick-Fila and Donna brought thank you cards and a cake for the nurses. I am so happy to be done. I do miss the nurses though.
Most of you know that my friends planned a benefit for me and The National Ovarian Cancer Coalition on Fri. Sept 17th in Tampa. It went very well. A lot of people came out. I had some friends from out town that drove a few hours to come. I had one friend and sorority sister, Holly who came down from NC to the benefit. Local Tampa weatherman Denis Phillips was the MC and did a wonderful job. The auction items and casino tables were a big hit. I had a very special surprise too. My niece did a special dance in my honor to a song that I had told her about called That's What Faith can Do. I would sometimes listen to this song to help me get through the day. It was a wonderful surprise. Her dance instructor was at the benefit as well. My friends did such a great job and worked so hard on putting this together. It was the most fun I had in a very long time.
On Sept 20th I had my bladder surgery. I was calmer this time before the surgery. I remember last time in pre-opp I was in tears and very scared. I woke up in a lot of pain pushing my morphine button and crying a lot. My wonderful sister Dara stayed the whole time at the hospital with me. I know she must have gotten very bored. I went in on Mon early in the morning and wasn't released until Thursday night. I don't really remember this, but I guess my sister was watching her favorite show one night when I woke up, oblivious that she may be watching the tv and said this tv has to go off. I pushed my morphine button and went back to sleep.
I then stayed with my sister in law until the following Sun. My dear friend Kim who has done a lot for me took me home with her from Sun until the following Fri to take care of me. My grandma then came in from AZ and is taking care of me now. My friend Kim has done so much for me! She took me to chemo a few times and took me home with her for days at a time to take care of me after chemo. She also, with the help of some other friends and family, planned the benefit. Kim did a lot of work and helped me in so many ways since the whole journey began. I have some wonderful family and friends who have done so much. I will say that going through something like this you really learn who your "TRUE" friends are. From the friends who say "hope you feel better" to the ones who actually stop to help, visit, call, send cards, bring meals, etc without even being asked. I have had some people who I don't even know do more for me than some who I do know. Not complaining, overall I have had some amazing friends and family go above and beyond helping me.
I am still in pain from the surgery, but from what I remember it is not as bad as the last surgery in March. Enough for now, I will write more later.
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Sunday, October 3, 2010
Wednesday, August 18, 2010
More Chemo
While Chemo isn't fun at all, I have to say that they have made vast improvements in it. As bad as it has been I thought I was going to be throwing up all the time. I only got real sick 1 time. That was my first session of my 2nd cycle. Kevin, aka, Bootes for those of you that know him stayed home with me all weekend. I had felt ok after Chemo on Thurs, just tired. Then on Fri afternoon I got sick. I slept for 4 hours after. When I woke up I was very weak and almost passed out. Bootes totally took care of me, brought me some Ginger Ale and crackers.
All of the chemo sessions just really seem to knock me down. The lack of energy and fatigue are the worst. I literally do nothing but sleep and eat for a few days after each first cycle session of chemo. They give me steroids to help with the nausea so I even when I am nauseous I am still hungry. I have gained almost 20 pounds being on chemo which I guess should be the least of my concerns. I know that once chemo is done the puffiness in my face and my appetite from the steroids will decrease. The steroids just make me so hungry sometimes and when I sleep a lot food is my only source of energy. I try to walk at least around the block once the sun goes down. On my better days I can go further. It does help with my energy level. Every week the nurse at chemo asks me if I have been walking that I need to walk.
My Dr went ahead and scheduled my bladder surgery for Monday, Sept 20th. I am so NOT LOOKING FORWARD TO THIS! I really want the hole healed in the bladder so I know it has to be done. The dr said it is painful because of where the cut me. He will go back through the same spot as last time. Right down the middle of the stomach muscles and I will be in pain and have 6 weeks of recovery time. I remember how much pain I was in after the last surgery and it was so awful. I honestly do not know how people have children. As much as I want and wanted them I do not know how you deal with the pain. I am more than happy to adopt!
My last day of chemo FOREVER is tomorrow, August 19, 2010. My last Nuelesta shot is Aug 20, 2010. More writing later...........Thank you for those who take the time to read.
All of the chemo sessions just really seem to knock me down. The lack of energy and fatigue are the worst. I literally do nothing but sleep and eat for a few days after each first cycle session of chemo. They give me steroids to help with the nausea so I even when I am nauseous I am still hungry. I have gained almost 20 pounds being on chemo which I guess should be the least of my concerns. I know that once chemo is done the puffiness in my face and my appetite from the steroids will decrease. The steroids just make me so hungry sometimes and when I sleep a lot food is my only source of energy. I try to walk at least around the block once the sun goes down. On my better days I can go further. It does help with my energy level. Every week the nurse at chemo asks me if I have been walking that I need to walk.
My Dr went ahead and scheduled my bladder surgery for Monday, Sept 20th. I am so NOT LOOKING FORWARD TO THIS! I really want the hole healed in the bladder so I know it has to be done. The dr said it is painful because of where the cut me. He will go back through the same spot as last time. Right down the middle of the stomach muscles and I will be in pain and have 6 weeks of recovery time. I remember how much pain I was in after the last surgery and it was so awful. I honestly do not know how people have children. As much as I want and wanted them I do not know how you deal with the pain. I am more than happy to adopt!
My last day of chemo FOREVER is tomorrow, August 19, 2010. My last Nuelesta shot is Aug 20, 2010. More writing later...........Thank you for those who take the time to read.
Sunday, August 8, 2010
My 2nd round of chemo they gave me the test drug I was going to be on along with the standard chemo. It is called Avastin. This drug isn't supposed to have to many side effects and the one it has are very rare. Well, I see the Dr every three weeks before each first session of a new cycle begins. When I went back to see the Dr for the 1st session of my 3rd cycle he found that I developed a rare side effect from the test drug. It only happens to 1 in over 1000 people. I developed a hole in my bladder so he cancelled chemo and sent me straight for xrays that day. The xrays confirmed the hole in the bladder. If it doesn't heal on it's own then I have to have another major surgery to fix it with 6 weeks of recovery time. Surgery sucks, so I pray it heals on its own, so far it has been about 8 weeks and it still has not healed on it's own totally. I will have to wait about a month after chemo ends to get my immune system back up and then have the surgery if it still is not healed.
Every week they draw my blood to make sure my white blood cell count is high enough to get chemo. They also test a lot of other things in my blood each week. Well the week after they found the hole in my bladder my blood counts dropped significantly. The week before it was at 1800, when it was re-tested the following Wed. it was down to 800. The next day they tested it again right before chemo hoping it was a bad blood draw the day before. On Thurs it was down to 500. No one is still sure why it dropped, but they had to cancel chemo again. My blood level needs to be at 1000 in order to get chemo. Because my levels were so low they put me on antibiotics and told me stay away from germs and people because I was at high risk to get an infection. The last thing you want while on chemo is to get sick or get an infection as your bodies immune system is unable to fight it off as it normally would. They then decided that because my blood counts dropped that I would need to start getting Nuelsta shots every 3 weeks in order to increase my white blood count. Nuelesta shots have a side effect of causing bone pain because it gets the white blood cells from your bone marrow. I had heard that taking Claritin could help with this bone pain so I had been taking the Claritin. The first time I had the shot I also took Ibuprofen 800 before the shot and a few times after the shot. I didn't have much bone pain, just a little so I felt blessed because some people have horrible pain from this. Well my 2nd shot which was just over a week ago I forgot to take the Ibuprofen after the shot and I had bone pain. It hurt for about a week from the top of my head all the way down to the bottom of my spine. I started taking the Ibuprofen 800 and it helped, but it still hurt pretty bad. As of right now I have 1 shot left in a couple weeks so hopefully that week is not bad as far as the bone pain. I am now down to the end so I do not have to much longer to go which is nice.
Every week they draw my blood to make sure my white blood cell count is high enough to get chemo. They also test a lot of other things in my blood each week. Well the week after they found the hole in my bladder my blood counts dropped significantly. The week before it was at 1800, when it was re-tested the following Wed. it was down to 800. The next day they tested it again right before chemo hoping it was a bad blood draw the day before. On Thurs it was down to 500. No one is still sure why it dropped, but they had to cancel chemo again. My blood level needs to be at 1000 in order to get chemo. Because my levels were so low they put me on antibiotics and told me stay away from germs and people because I was at high risk to get an infection. The last thing you want while on chemo is to get sick or get an infection as your bodies immune system is unable to fight it off as it normally would. They then decided that because my blood counts dropped that I would need to start getting Nuelsta shots every 3 weeks in order to increase my white blood count. Nuelesta shots have a side effect of causing bone pain because it gets the white blood cells from your bone marrow. I had heard that taking Claritin could help with this bone pain so I had been taking the Claritin. The first time I had the shot I also took Ibuprofen 800 before the shot and a few times after the shot. I didn't have much bone pain, just a little so I felt blessed because some people have horrible pain from this. Well my 2nd shot which was just over a week ago I forgot to take the Ibuprofen after the shot and I had bone pain. It hurt for about a week from the top of my head all the way down to the bottom of my spine. I started taking the Ibuprofen 800 and it helped, but it still hurt pretty bad. As of right now I have 1 shot left in a couple weeks so hopefully that week is not bad as far as the bone pain. I am now down to the end so I do not have to much longer to go which is nice.
Tuesday, July 27, 2010
Chemo Started
Like I mentioned before, the plan was to work M-W and have chemo on Thursdays. I started back to work on April 12 and chemo started on tax day, April 15th. The plan to work M-W didn't end up working out so well. Chemo really has taken a lot out of me and for more than just a couple of days. I was to have 18 weeks, 6, 3 week cycles of chemo. The first week of each cycle the hardest, the 2nd was still not easy, and the 3rd wasn't as bad. Just by the Wed I start to feel better, it starts over again!
The first chemo treatment, I was very nausea and had a lot of anxiety. I was very scared! I kept thinking am I going to get sick now or in 5 mins, or 10 mins, etc. It was awful and the nausea lasted over a week. I would have allergic reactions where my tongue would swell up. Luckily I had a couple good friends to help and with a phone call to the Dr and benadryl I was off to sleep. That was the Sat after my first treatment.
Another weird side effect, my eye sight even changed. The day after my first chemo, on Fri I noticed I could not see as well. I had never heard of vision changing with chemo, but mine did. I had to get a new prescription at the eye Dr and he confirmed my eye sight was worse.
I went through about 5 weeks of chemo before my hair started to come out. I didn't want to deal with it just coming out everywhere so as soon as I got the first of the big chuncks in the shower I made the appointment to get it all cut off.
I was very blessed, my dear friend Cheryl just happen to meet a lady from Eden Day Spa at FL Hospital. It is a spa for cancer patients only, but it is not cheap. My Ins would not cover a wig and wigs are not cheap. The synthetic hair starts around $200 and the good stuff, real hair starts around $600 and goes up from there. Well when I found out the cost I went to the American Cancer Society and got a wig for free. This wig however, is a little big for my head, but looks adorable with a hat. In FL summer who wants to have to wear a wig and a hat!?? They are so hot and uncomfortable! Well, I mentioned I was blessed! The lady, Sandy at Eden Day Spa whom my friend just had happened to meet insisted I should just come in for a consultation, that I didn't have to buy anything. Well went I went in she found a Free, Donated, Real Hair Wig for me! It was the wrong color, very light blonde, but all I had to pay for was the color, trim, and service. The cut and color are just like what I already had. Noone that doesn't know can't even tell. It is awesome and I am truly blessed, because it would have cost over $1000. Being sick, I am not earning the income I need so the last thing I needed was to pay a lot of money for hair! Call it what you want, but I don't believe in coincidenses. I believe God was taking care of me and my needs through my friend Cheryl meeting Sandy.
The first chemo treatment, I was very nausea and had a lot of anxiety. I was very scared! I kept thinking am I going to get sick now or in 5 mins, or 10 mins, etc. It was awful and the nausea lasted over a week. I would have allergic reactions where my tongue would swell up. Luckily I had a couple good friends to help and with a phone call to the Dr and benadryl I was off to sleep. That was the Sat after my first treatment.
Another weird side effect, my eye sight even changed. The day after my first chemo, on Fri I noticed I could not see as well. I had never heard of vision changing with chemo, but mine did. I had to get a new prescription at the eye Dr and he confirmed my eye sight was worse.
I went through about 5 weeks of chemo before my hair started to come out. I didn't want to deal with it just coming out everywhere so as soon as I got the first of the big chuncks in the shower I made the appointment to get it all cut off.
I was very blessed, my dear friend Cheryl just happen to meet a lady from Eden Day Spa at FL Hospital. It is a spa for cancer patients only, but it is not cheap. My Ins would not cover a wig and wigs are not cheap. The synthetic hair starts around $200 and the good stuff, real hair starts around $600 and goes up from there. Well when I found out the cost I went to the American Cancer Society and got a wig for free. This wig however, is a little big for my head, but looks adorable with a hat. In FL summer who wants to have to wear a wig and a hat!?? They are so hot and uncomfortable! Well, I mentioned I was blessed! The lady, Sandy at Eden Day Spa whom my friend just had happened to meet insisted I should just come in for a consultation, that I didn't have to buy anything. Well went I went in she found a Free, Donated, Real Hair Wig for me! It was the wrong color, very light blonde, but all I had to pay for was the color, trim, and service. The cut and color are just like what I already had. Noone that doesn't know can't even tell. It is awesome and I am truly blessed, because it would have cost over $1000. Being sick, I am not earning the income I need so the last thing I needed was to pay a lot of money for hair! Call it what you want, but I don't believe in coincidenses. I believe God was taking care of me and my needs through my friend Cheryl meeting Sandy.
Tuesday, July 13, 2010
Port for Chemo
I mentioned before that I would be placed randomly in one of three arms for chemotherapy. The one I was put into was to have the chemo right above the chest and below the shoulder. So I would not be getting the chemo in my belly. They do not know which treatment is better which is why they are doing the study. At first I wanted the one in the belly so I was a little disappointed. The side effects are worse, but some think it may be more effective and I wanted the max treatment. At this point being over halfway done with chemo I am glad I didn't get the one in the belly. It has been rough as it is and after speaking with other patients who had the chemo in the belly I don't think I could have handled it.
Next step was to have a port placed for the chemo. Instead of finding a new vein each week for the chemo they place a port under the skin. It is connected to a large vein and it has a place for the needle to go in. I can feel it by touch and the nurses are so good they never miss. I had to undergo outpatient surgery for the port placement. My pain only lasted about a day or so and the surgery was nothing compared to the hysterectomy. Just another scar to add my first one..........I will talk about how the first treatment went later. Thanks for reading!! : )
Next step was to have a port placed for the chemo. Instead of finding a new vein each week for the chemo they place a port under the skin. It is connected to a large vein and it has a place for the needle to go in. I can feel it by touch and the nurses are so good they never miss. I had to undergo outpatient surgery for the port placement. My pain only lasted about a day or so and the surgery was nothing compared to the hysterectomy. Just another scar to add my first one..........I will talk about how the first treatment went later. Thanks for reading!! : )
Sunday, July 11, 2010
Continuing my story
Hello again!
In writing my first Blog, I forgot to mention how blessed I am! When I went to the hospital for my surgery on March 1 I had 6 family members and 5 close friends there with me. Most people have 1 or 2 people with them. The nurse who took me back for surgery was amazed that I had so many people with me. More people came while I was in surgery as well. My family and friends took over half of the family waiting room and it was a big room. No one else had that many people supporting them in person. I also had several family and friends with me around the clock the whole week and my sister and sister in law took turns spending the night in the hospital with me. They told me I would tell them to leave my room so I could sleep and go to the family room right down the hall. Then I would wake up and call them and ask why did they leave my room to come back. Got to love drugs! : )
Those 5 days in the hospital are a little bit blurry. I remember being in a lot of pain and the nurse made we walk around the hall every day. I am told it was more like a shuffle than a walk, but I remember I begged not to do it and had to anyways. I was on 1 painkiller that I cannot remember the name of, but it is considered hospital crack. I was also on a morphine drip for pain.
I was told the morphine drip only releases every 6 minutes regardless of how often I push the button. Well, I thought they said every 6 seconds! My family and friends were very entertained! I pushed the button non stop and was constantly putting chap stick on my lips as I kept telling them I was afraid the chap stick would come off. I am told the nurse said I broke the hospital record for how many times I pushed the morphine drip button. I said, well I don't know when 6 seconds or mins are so I am going to keep pushing it. They said I even hit the button non stop in my sleep!
Once I got home my grandma and grandpa where in town from AZ to take care of me. It was so wonderful having them around to help me with everything. I was still in a lot of pain, but had good days and bad days. I had Many friends and family visit and bring food, so again I am blessed with so many people to help! I was trying not to think about chemo coming up, but I was learning what to expect and what it would be like.
Next up was chemo. I decided with my Dr and family to take part in a clinical trial. There are 3 arms to the clinical trial and each patient is randomly put into one of the 3 arms. The chemo meds are the same chemo meds every Ovarian Cancer patient gets. They are called Carbo and Taxol. The difference is that in 2 of the arms you get some of the chemo in your belly and the side effects are worse. In one of the arms it is only just above the chest, just right below the shoulder. Then there is the test drug that is also received that has been shown to stop the blood from spreading the cancer. This drug is already approved in breast, lung, and colon cancer and is in the final stages of approval for Ovarian Cancer as well. The test drug is called Avastin. I really wanted to be on the test drug and I felt like that by taking part in the study I would also be helping with research for other patients. Another factor was that I felt like I was leaving it up to God as to which of the 3 treatment arms I would receive. This way, trying to decide which regimen to take, as there are 2-3 options was no longer in my hands.
I went back to work on April 12 part time. The plan was to work M-W. Chemo was on Thursday and I would need Friday to Sun to rest. Chemo started on April 15, 2010.
More about the chemo process later~
In writing my first Blog, I forgot to mention how blessed I am! When I went to the hospital for my surgery on March 1 I had 6 family members and 5 close friends there with me. Most people have 1 or 2 people with them. The nurse who took me back for surgery was amazed that I had so many people with me. More people came while I was in surgery as well. My family and friends took over half of the family waiting room and it was a big room. No one else had that many people supporting them in person. I also had several family and friends with me around the clock the whole week and my sister and sister in law took turns spending the night in the hospital with me. They told me I would tell them to leave my room so I could sleep and go to the family room right down the hall. Then I would wake up and call them and ask why did they leave my room to come back. Got to love drugs! : )
Those 5 days in the hospital are a little bit blurry. I remember being in a lot of pain and the nurse made we walk around the hall every day. I am told it was more like a shuffle than a walk, but I remember I begged not to do it and had to anyways. I was on 1 painkiller that I cannot remember the name of, but it is considered hospital crack. I was also on a morphine drip for pain.
I was told the morphine drip only releases every 6 minutes regardless of how often I push the button. Well, I thought they said every 6 seconds! My family and friends were very entertained! I pushed the button non stop and was constantly putting chap stick on my lips as I kept telling them I was afraid the chap stick would come off. I am told the nurse said I broke the hospital record for how many times I pushed the morphine drip button. I said, well I don't know when 6 seconds or mins are so I am going to keep pushing it. They said I even hit the button non stop in my sleep!
Once I got home my grandma and grandpa where in town from AZ to take care of me. It was so wonderful having them around to help me with everything. I was still in a lot of pain, but had good days and bad days. I had Many friends and family visit and bring food, so again I am blessed with so many people to help! I was trying not to think about chemo coming up, but I was learning what to expect and what it would be like.
Next up was chemo. I decided with my Dr and family to take part in a clinical trial. There are 3 arms to the clinical trial and each patient is randomly put into one of the 3 arms. The chemo meds are the same chemo meds every Ovarian Cancer patient gets. They are called Carbo and Taxol. The difference is that in 2 of the arms you get some of the chemo in your belly and the side effects are worse. In one of the arms it is only just above the chest, just right below the shoulder. Then there is the test drug that is also received that has been shown to stop the blood from spreading the cancer. This drug is already approved in breast, lung, and colon cancer and is in the final stages of approval for Ovarian Cancer as well. The test drug is called Avastin. I really wanted to be on the test drug and I felt like that by taking part in the study I would also be helping with research for other patients. Another factor was that I felt like I was leaving it up to God as to which of the 3 treatment arms I would receive. This way, trying to decide which regimen to take, as there are 2-3 options was no longer in my hands.
I went back to work on April 12 part time. The plan was to work M-W. Chemo was on Thursday and I would need Friday to Sun to rest. Chemo started on April 15, 2010.
More about the chemo process later~
Saturday, July 10, 2010
About me and this blog
Hello Everyone and welcome to my online blog. I have created this Finally so my friends and family can follow my journey through chemo and my fight against Ovarian Cancer. Also I want to create awareness for Ovarian Cancer so Please feel free to share with anyone.
Where to begin!!??
On Feb. 23, 2010 I was seen by a Gynecological Oncologist who told me that he was 99.9% sure that the huge mass, the size of melons found on my ovary was indeed cancer. Surgery was scheduled for March 1, 2010 the following Monday! Talk about devastated and in denial!! I was very hopeful that he was indeed wrong and it was not as serious as he was telling me, although I was still very upset. A couple days later I got a 2nd opinion on the advice of a dear friend, Kim O. The 2nd Dr gave me the same diagnoses, so I knew at that point it was pretty serious. I went with my Original surgeon as he is very experienced, went to John Hopkins (you don't just get into John Hopkins Medical School!), teaches other Drs on the subject, is at teaching hospital, and is at MD Anderson, one of the top 2 or 3 Cancer treatment centers in the country.
I went from begging the Dr not to take anything out that wasn't necessary, (as I was scheduled for a Full Hysterectomy), to telling the Dr to do whatever it took and take anything and everything he needed to to save my life.
My surgeon did what's called a de bulking surgery and staging of the cancer. This is standard procedure. After surgery I was diagnosed as Stage 3 Ovarian Cancer. I had a full hysterectomy, the cancer had also spread to my appendix and stomach omentum (outer lining of the stomach) so they were removed as well.
The next week was spent in the hospital followed by 5 more weeks of recovery time at home. Talk about intense pain! I didn't know pain like this was possible! When I woke up in recovery I thought I was going to die. It was awful and intense pain. Surgery is not fun!!
I will continue this story later and write more. I am still going through chemo and it is time for a nap. More to follow~
Where to begin!!??
On Feb. 23, 2010 I was seen by a Gynecological Oncologist who told me that he was 99.9% sure that the huge mass, the size of melons found on my ovary was indeed cancer. Surgery was scheduled for March 1, 2010 the following Monday! Talk about devastated and in denial!! I was very hopeful that he was indeed wrong and it was not as serious as he was telling me, although I was still very upset. A couple days later I got a 2nd opinion on the advice of a dear friend, Kim O. The 2nd Dr gave me the same diagnoses, so I knew at that point it was pretty serious. I went with my Original surgeon as he is very experienced, went to John Hopkins (you don't just get into John Hopkins Medical School!), teaches other Drs on the subject, is at teaching hospital, and is at MD Anderson, one of the top 2 or 3 Cancer treatment centers in the country.
I went from begging the Dr not to take anything out that wasn't necessary, (as I was scheduled for a Full Hysterectomy), to telling the Dr to do whatever it took and take anything and everything he needed to to save my life.
My surgeon did what's called a de bulking surgery and staging of the cancer. This is standard procedure. After surgery I was diagnosed as Stage 3 Ovarian Cancer. I had a full hysterectomy, the cancer had also spread to my appendix and stomach omentum (outer lining of the stomach) so they were removed as well.
The next week was spent in the hospital followed by 5 more weeks of recovery time at home. Talk about intense pain! I didn't know pain like this was possible! When I woke up in recovery I thought I was going to die. It was awful and intense pain. Surgery is not fun!!
I will continue this story later and write more. I am still going through chemo and it is time for a nap. More to follow~
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