Well the last few months have been crazy and emotional. A few months ago I was told there was cancer in the retroperitineum, the spleen, lungs, and multiple lymph nodes going up into the neck. My doctors had basically said that I will be on and off chemo for the rest of my life. And the rest of my life was assumed to come sooner than I would have liked. Having done chemo 2 times already I decided that I didn't want to do it again. I did an insane amount of research and changed my diet. My diet is no longer a diet though, it is now a lifestyle. I am very fortunate to have an amazing husband that changed with me. We are a team and as a team we cut out all processed sugar and switched to organic. We still eat natural sugars such as fruits but no sugar. We are in no way vegetarians but we cut down our meat intake and increased our veggie intake.
As most of you know I had my first visit to NIH last month and had surgery to remove the lymph nodes in my neck. From those nodes the doctors started growing my T-cells with the plan to transfuse them back into me in mid January. And if everything went as planned those transfused cells fight all the cancer and I would have a chance at a "normal" life that did not include chemo. After my surgery my doctor informed me that my cells were growing very well. Everything was off to a great start. They scheduled me to come back this month to rescan and would probably start treatment in mid January. What no one expected though was that when they redid my scan they were unable to find any cancer anywhere. Now as my mom said the nurse part of me says this is IMPOSSIBLE but the Christian part says that God has bigger plans for me. We have some close friends that said not to question miracles because that's what this is. It's a miracle. I'm a nurse though and I question everything. This scan that I just had done was a CT scan. CTs are very useful and would pick up on a lot. PET scans are a lot more sensitive but they can also give a lot of false results. If you have an ear infection for example it would pick up on a PET as possibly being cancerous. So there is a chance that there is still trace amounts of cancer but that doesn't change the fact that the last CT scan showed stuff that is not on the most recent scan. Am I cured for life? Maybe!
Maybe it was my diet that led to the changes or maybe its the billion prayers that were prayed for me. My 4 year old niece was praying before dinner last week and every night she would pray for me to get better. Well I guess she got a little inpatient because right before we came she prayed for Shannon to get better NOW. When I had asked my husband what he wanted for Christmas his reply was a healthy wife. I never once thought that I would be able to give him his wish. So this Christmas (our first Christmas as husband and wife) is going to be an amazing one. I have an amazing family, friends that are family but more than that I have the gift of life and what better gift is there.
Wednesday, December 19, 2012
Monday, November 19, 2012
Miracles at NIH
So I probably should have updated this multiple times already because a lot has happened since my last blog. I was scheduled for clinic Nov 8th. So on Wed Nov 7th we woke up at 2am stopped in Hanford to pick up my mom and drove to LA to catch our flight to Baltimore. It was an extremely long day of travel. I luckily slept a lot in the car and on the planes. I think we finally got to our room around 11pm. I was asked to arrive early Thursday morning because some of the blood work I would need before surgery gets sent out at 9am.
Getting onto NIH wasn't exactly what I expected. After spending 35 minutes in traffic to go 5 miles we finally entered the compound. We were asked to open the trunk and all the doors on the car and to take all of our bags inside. Security searched our car, our bags were put through x-ray, we had to go through metal detectors and background checks. We eventually got through everything and I did all my new patient stuff. In the afternoon I met my team of doctors. Dr. Hinrichs is the doctor that I had been speaking with on the phone. He is the doctor that created the protocol I am on. Dr. Butler is the resident and Dr. Yang was the attending. They all consulted together and then shared the following information with me. The lymph nodes in the neck were definitely cancerous, the spots on the lungs did not light up on the PET and they believe that they may be granulomas and not necessarily cancerous, the spot on the spleen appeared more cystic appearing and not consistent with cervical cancer. So the plan was to go ahead and do the surgery to remove the lymph nodes in the neck and start growing the T-cells. They weren't really positive the cancer was anywhere else but did say that cervical cancer is very unpredictable and that it will eventually show its its ugly head and they wanted to be ready to treat. The plan was to do the surgery asap and rescan starting in December and be ready to start treatment when necessary. Unfortunately the surgery team was unavailable that day so I was sent back to the hotel and told they would contact me after there meeting on Friday.
On Friday I got a phone call asking me to come in to meet with the surgeon. I met with Dr. Hughes and she went over all the risks of the surgery and the plan. Monday was a holiday (Veterans Day) and even though they were booked on Tuesday they were going to try and squeeze me in. So I was to be admitted on Monday. I would go to Aphresis at 6am (Aphresis: blood is removed from the body put through a machine that would separate the white blood cells and then the blood returned to the body) and be ready to go to surgery.
We still had 3 days before surgery and we were in the DC area. So we spent our 3 days playing. We got to see my cousin who I haven't seen in awhile, we spent Veterans Day at Arlington Cemetery and was privileged to have front row seats to watching Obama lay the wreath at the tomb of the unknown, and we had a blast riding the Segways on a 3 hour night tour of the monuments in DC. In addition we also got to eat at some very good authentic food places.
Monday night we went in to the hospital, I got there before my roommate so I got to choose which bed and went with the window. My roommate arrived about an hour later and I dozed off to sleep as she got situated.
The next morning I was woken up and taken to aphresis. It took a few extra pokes but they eventually got 2 IVs started and got the aphresis going. The machines kept beeping and I kept feeling a fluttering feeling in my arm but I was still able to doze off. I was woken up about an hour later and told that the aphresis wasn't working because my veins were too small and the doctor told them to send me back to my room. Once back in my room I was able to chat a little with my new roommate and was forced to starve until they finally came and got me for surgery. The surgery took a little longer than expected because they needed additional tumors but everything went well and our tickets were booked to go home Wednesday. Later on that day we found out that they really needed the aphresis but due to the blood thinner given during aphresis it couldn't be done too soon after surgery so they were going to meet with team to decide what to do. I ended up getting really sick a few hours after surgery and it ended up taking a few different nausea meds but I eventually started feeling better. That night I got to really chat with my new roommate. I don't think its fair to share too much information about her but lets just say that NIH was her ONLY option and her very elaborate surgery was scheduled for Thursday. It was nice to talk to someone who feels the same way you feel.
The next morning I saw every doctor. And I got a lot of good news. The best coming from Dr. Hinrichs who said that my cells were growing wonderfully. He said they were by far on the high spectrum and said that he couldn't hope for anything better. The only bad news was that I still needed to have the aphresis. I was given the choice to do it on Friday (which meant no going home) or to come back and do it next week. (which meant a lot of traveling). I decided to go with Friday. I was kept as inpatient that way I could return if I had any problems but was given a day pass and told to return Friday morning for aphresis.
On Wednesday I had to get some paperwork signed so I stopped by room to talk to my roommate and her husband. We had a nice chat and then went back to the lodge. On Thursday (my roommates surgery day) we went by the hospital to go have lunch and check on my roommates husband. Their son had arrived and he was waiting there as well. They gave us a quick update and it sounded like everything was going well. We were only going to stay for a short time but we ended up staying the rest of the time of her surgery. This is when I got to see a miracle. The doctors at NIH had been able to do what no other doctor would even attempt. My roommates husband started crying which then of course made me start crying. We then hugged goodbye.
On Friday morning I went back to my bed in the hospital and was taken down to aphresis. Due to my veins being too small last time the doctor came and put in a femoral line. Even though they numb it before they do it it still hurt. The aphresis took about 4 hours (I slept most of it) but they got what they wanted and I was sent back to my room where I had to lay flat for 2 hours and was then discharged. From there we drove to Philly and stayed the night and finally flew home on Saturday.
It was a VERY long trip but worth it. I have been unsure at times of what is the best choice of treatment but I am confident now that I am at the right place.
So for now I just have to take it easy. I'm scheduled to go back to Maryland Dec 17 for a scan and a follow up appointment
Getting onto NIH wasn't exactly what I expected. After spending 35 minutes in traffic to go 5 miles we finally entered the compound. We were asked to open the trunk and all the doors on the car and to take all of our bags inside. Security searched our car, our bags were put through x-ray, we had to go through metal detectors and background checks. We eventually got through everything and I did all my new patient stuff. In the afternoon I met my team of doctors. Dr. Hinrichs is the doctor that I had been speaking with on the phone. He is the doctor that created the protocol I am on. Dr. Butler is the resident and Dr. Yang was the attending. They all consulted together and then shared the following information with me. The lymph nodes in the neck were definitely cancerous, the spots on the lungs did not light up on the PET and they believe that they may be granulomas and not necessarily cancerous, the spot on the spleen appeared more cystic appearing and not consistent with cervical cancer. So the plan was to go ahead and do the surgery to remove the lymph nodes in the neck and start growing the T-cells. They weren't really positive the cancer was anywhere else but did say that cervical cancer is very unpredictable and that it will eventually show its its ugly head and they wanted to be ready to treat. The plan was to do the surgery asap and rescan starting in December and be ready to start treatment when necessary. Unfortunately the surgery team was unavailable that day so I was sent back to the hotel and told they would contact me after there meeting on Friday.
On Friday I got a phone call asking me to come in to meet with the surgeon. I met with Dr. Hughes and she went over all the risks of the surgery and the plan. Monday was a holiday (Veterans Day) and even though they were booked on Tuesday they were going to try and squeeze me in. So I was to be admitted on Monday. I would go to Aphresis at 6am (Aphresis: blood is removed from the body put through a machine that would separate the white blood cells and then the blood returned to the body) and be ready to go to surgery.
We still had 3 days before surgery and we were in the DC area. So we spent our 3 days playing. We got to see my cousin who I haven't seen in awhile, we spent Veterans Day at Arlington Cemetery and was privileged to have front row seats to watching Obama lay the wreath at the tomb of the unknown, and we had a blast riding the Segways on a 3 hour night tour of the monuments in DC. In addition we also got to eat at some very good authentic food places.
Monday night we went in to the hospital, I got there before my roommate so I got to choose which bed and went with the window. My roommate arrived about an hour later and I dozed off to sleep as she got situated.
The next morning I was woken up and taken to aphresis. It took a few extra pokes but they eventually got 2 IVs started and got the aphresis going. The machines kept beeping and I kept feeling a fluttering feeling in my arm but I was still able to doze off. I was woken up about an hour later and told that the aphresis wasn't working because my veins were too small and the doctor told them to send me back to my room. Once back in my room I was able to chat a little with my new roommate and was forced to starve until they finally came and got me for surgery. The surgery took a little longer than expected because they needed additional tumors but everything went well and our tickets were booked to go home Wednesday. Later on that day we found out that they really needed the aphresis but due to the blood thinner given during aphresis it couldn't be done too soon after surgery so they were going to meet with team to decide what to do. I ended up getting really sick a few hours after surgery and it ended up taking a few different nausea meds but I eventually started feeling better. That night I got to really chat with my new roommate. I don't think its fair to share too much information about her but lets just say that NIH was her ONLY option and her very elaborate surgery was scheduled for Thursday. It was nice to talk to someone who feels the same way you feel.
The next morning I saw every doctor. And I got a lot of good news. The best coming from Dr. Hinrichs who said that my cells were growing wonderfully. He said they were by far on the high spectrum and said that he couldn't hope for anything better. The only bad news was that I still needed to have the aphresis. I was given the choice to do it on Friday (which meant no going home) or to come back and do it next week. (which meant a lot of traveling). I decided to go with Friday. I was kept as inpatient that way I could return if I had any problems but was given a day pass and told to return Friday morning for aphresis.
On Wednesday I had to get some paperwork signed so I stopped by room to talk to my roommate and her husband. We had a nice chat and then went back to the lodge. On Thursday (my roommates surgery day) we went by the hospital to go have lunch and check on my roommates husband. Their son had arrived and he was waiting there as well. They gave us a quick update and it sounded like everything was going well. We were only going to stay for a short time but we ended up staying the rest of the time of her surgery. This is when I got to see a miracle. The doctors at NIH had been able to do what no other doctor would even attempt. My roommates husband started crying which then of course made me start crying. We then hugged goodbye.
On Friday morning I went back to my bed in the hospital and was taken down to aphresis. Due to my veins being too small last time the doctor came and put in a femoral line. Even though they numb it before they do it it still hurt. The aphresis took about 4 hours (I slept most of it) but they got what they wanted and I was sent back to my room where I had to lay flat for 2 hours and was then discharged. From there we drove to Philly and stayed the night and finally flew home on Saturday.
It was a VERY long trip but worth it. I have been unsure at times of what is the best choice of treatment but I am confident now that I am at the right place.
So for now I just have to take it easy. I'm scheduled to go back to Maryland Dec 17 for a scan and a follow up appointment
Wednesday, October 31, 2012
I Made the Team
Well I finally heard back from the doctor in Maryland. (there was a slight delay because of the storm)I have qualified for the immunotherapy trial. So to make a long story short the idea of the clinical trial is that they remove a cancer tumor and grow the t-cells (these are like tumor fighting cells) Once the cells are grown you are given chemo to suppress your immune system. Following chemo you are given your cells and interluekin-2 (this kind of puts your t-cells on steroids). If everything works out perfectly these T-cells attack the cancerous tumors and and ideally prevents future cancer growth. Its pretty similar to the way a bone marrow transplant would work.
So what are the downfalls of this clinical trial? Like any kind of medication or medical treatment there are side effects. The first one is the risk of infection during the chemo. The doctor said that just about everyone gets a fever and ends up on antibiotics. This is obviously a bigger deal for someone on chemo that is unable to fight off the infection. Another problem is the interluekin-2, come to find although this drug does great things it also does horrible things.The doctor said that although the protocol allows for 11-12 doses of the interleukin-2 no one gets that many. He said they give the medication until the patient starts experiencing the side effect. ex) difficulty breathing, kidney failure, pulmonary edema, low blood pressure. The good news is all these side effects are reversible. Its just kind of scary to think that this medication sends people to the ICU. The other bad news is that they wont be able to start the transfusions until the middle of January so that leaves another 2 1/2 months with no treatment.
So in my situation the doctor is planning on surgically removing the cancerous nodes from my neck. Those will be used to grow the t-cells. The tumor on my spleen will be used to monitor and measure if the immunotherapy protocol is effective.
So far there has been 4 people who have done this clinical trial 1.) a female with cervical cancer who showed no response to treatment. 2.) a female with cervical cancer whose first 2 scans showed reduce in tumor size but is now showing suspicion for tumor progression. 3.) a female with cervical cancer, this one is fairly recent but the first scan showed dramatic tumor regression. 4.) a male with a neck tumor that is also fairly new and has shown tumor regression after the first scan.
So now I'm back to waiting until I hear from the nurses that will schedule me for clinic and surgery will hopefully be able to be done in the same visit.
So what are the downfalls of this clinical trial? Like any kind of medication or medical treatment there are side effects. The first one is the risk of infection during the chemo. The doctor said that just about everyone gets a fever and ends up on antibiotics. This is obviously a bigger deal for someone on chemo that is unable to fight off the infection. Another problem is the interluekin-2, come to find although this drug does great things it also does horrible things.The doctor said that although the protocol allows for 11-12 doses of the interleukin-2 no one gets that many. He said they give the medication until the patient starts experiencing the side effect. ex) difficulty breathing, kidney failure, pulmonary edema, low blood pressure. The good news is all these side effects are reversible. Its just kind of scary to think that this medication sends people to the ICU. The other bad news is that they wont be able to start the transfusions until the middle of January so that leaves another 2 1/2 months with no treatment.
So in my situation the doctor is planning on surgically removing the cancerous nodes from my neck. Those will be used to grow the t-cells. The tumor on my spleen will be used to monitor and measure if the immunotherapy protocol is effective.
So far there has been 4 people who have done this clinical trial 1.) a female with cervical cancer who showed no response to treatment. 2.) a female with cervical cancer whose first 2 scans showed reduce in tumor size but is now showing suspicion for tumor progression. 3.) a female with cervical cancer, this one is fairly recent but the first scan showed dramatic tumor regression. 4.) a male with a neck tumor that is also fairly new and has shown tumor regression after the first scan.
So now I'm back to waiting until I hear from the nurses that will schedule me for clinic and surgery will hopefully be able to be done in the same visit.
Monday, October 29, 2012
Hawaii sun is good for the soul
Well its been awhile since I have posted anything. So lets start with the good stuff. Jim and I were very fortunate and have some friends of the family that offered us their condo to stay in. Their condo was in Waikiki Beach in Oahu. We had an amazing time while we were there. For those that have never been to Hawaii I think its safe to say that Hawaii is a different way of life. Except when it comes to the bums they still hang out outside of he McDonald's. In general though its a life that is lived outside in Hawaii. The weather is amazing and there is just so many things that you can do. The unforgettable moments for me was 1. Hiking diamond head. It was a challenge for me because I am not even close to the shape I use to be. We had to take frequent breaks but I made it and the views from the top were unforgettable. 2.Snorkeling at hanauma bay. Another amazing thing that we did. I have never really done snorkeling before outside of doing it in the pool as a kid. Snorkeling in the bay is way cool. The fish are so colorful and come right up to you. We were also privileged enough to swim with a turtle. I must say that my husband totally nerded out with the snorkeling. So much so that he decided to skip the sunscreen on his back. Don't worry though its been over a week and he still remembers that he should have listened to me and put on sunscreen. After the bay we also went para sailing that day. Also a ton of fun. I'm not crazy enthusiastic when it comes to heights and there was a few times that I got nervous but it was still something amazing to do with my husband. Another unforgettable thing was Pearl Harbor. Just trying to grasp what was going on the world at the time is difficult. The last day was also very memorable. We rented a car and went around to the north shore stopping at all the famous beaches (banzai pipeline) and ate at the famous Giovanni's shrimp truck. For Jim and I it was a really relaxing day to be on our own time schedule and not waiting for the bus. The north shore was a little more relaxed and not nearly as busy. A very relaxing day.
So I know everyone is dying to know whats going on with my recent scan. I was suppose to have my scan on Wednesday but the machine was broke so I was rescheduled for Thursday at their sister facility. I tried to get the CD after the appointment so I could overnight it to Maryland but there was some problems and they couldn't get it to upload. So we picked it up on Friday and it was set to deliver on Monday. I called this morning to see if they got the CD and get their opinion but unfortunately due to the storm they were closed but they hope to reopen tomorrow. So more waiting.... I hate waiting though so i called and got the official read from the radiologist. In comparing the recent CT with the previous PET some lymph nodes have gotten bigger and some have gotten smaller. The other good news is that the radiologist that read my scan believes that the spot on the lungs might be old infection changes and may not be a metastasis. If that is the case not having the lungs involved increases my prognosis pretty significantly. I actually started crying when I read the results today but they were tears of joy. I know this scan is not perfect but after so much anxiety with the anticipation I was so relieved to get the results that I did. So for now I am waiting to hear back from Maryland to see if the tumors on the spleen are good enough for them.
So I know everyone is dying to know whats going on with my recent scan. I was suppose to have my scan on Wednesday but the machine was broke so I was rescheduled for Thursday at their sister facility. I tried to get the CD after the appointment so I could overnight it to Maryland but there was some problems and they couldn't get it to upload. So we picked it up on Friday and it was set to deliver on Monday. I called this morning to see if they got the CD and get their opinion but unfortunately due to the storm they were closed but they hope to reopen tomorrow. So more waiting.... I hate waiting though so i called and got the official read from the radiologist. In comparing the recent CT with the previous PET some lymph nodes have gotten bigger and some have gotten smaller. The other good news is that the radiologist that read my scan believes that the spot on the lungs might be old infection changes and may not be a metastasis. If that is the case not having the lungs involved increases my prognosis pretty significantly. I actually started crying when I read the results today but they were tears of joy. I know this scan is not perfect but after so much anxiety with the anticipation I was so relieved to get the results that I did. So for now I am waiting to hear back from Maryland to see if the tumors on the spleen are good enough for them.
Monday, October 8, 2012
Are tattoos taboo?
First off I would like to say that I don't care what anyone thinks of my tattoo. I love it. My sister, my mom, and my 2 best friends all went and got one. Everyone got theirs on their wrist but I got mine on my stomach. 4 of us were even tattoo virgins.
I would like to say that I did not ask anyone or pull the "but I have cancer" card. (The only good thing about having cancer is being able to say that.)They all wanted to do and did it on their free will. I would also like to say that I love all of them and appreciate everything they do to support me.
My tattoo has a heart which symbolizes love, doves which symbolize hope, little stick people which symbolize friends and family, and the word faith. My tattoo represents that when you fight cancer you need to have faith, hope, love, and friends.
I always knew I had a great support system. Tattoos are forever and so is my support. We had a lot of laughs that day and its memories that we will look back at 20 years from now and still smile. They reminded me that day that I am not fighting this alone. They are fighting it with me.
And for everyone that wants to know how I am doing. Today is day 7 of the 10 day cleanse. For those that want to know we are doing the modern manna 10 day detox. I'm lucky that my husband is doing this with me. Did I mention that I have an amazingly supportive husband? The first few days were difficult. Not because I was hungry but because I was so full from all the fluids that I had to drink. On day 4 we had to add a blood detox into the schedule. Since adding the blood detox I have gotten pretty sick every evening around 5. They say that when you detox you can have a "cleansing crisis" which is exactly how I felt. Jim hasn't gotten sick at all but he also hasn't had cancer or chemo before. So hopefully this feeling is because its working and making me better. My scan has been scheduled for October 24th so we should know them.
I would like to say that I did not ask anyone or pull the "but I have cancer" card. (The only good thing about having cancer is being able to say that.)They all wanted to do and did it on their free will. I would also like to say that I love all of them and appreciate everything they do to support me.
My tattoo has a heart which symbolizes love, doves which symbolize hope, little stick people which symbolize friends and family, and the word faith. My tattoo represents that when you fight cancer you need to have faith, hope, love, and friends.
I always knew I had a great support system. Tattoos are forever and so is my support. We had a lot of laughs that day and its memories that we will look back at 20 years from now and still smile. They reminded me that day that I am not fighting this alone. They are fighting it with me.
And for everyone that wants to know how I am doing. Today is day 7 of the 10 day cleanse. For those that want to know we are doing the modern manna 10 day detox. I'm lucky that my husband is doing this with me. Did I mention that I have an amazingly supportive husband? The first few days were difficult. Not because I was hungry but because I was so full from all the fluids that I had to drink. On day 4 we had to add a blood detox into the schedule. Since adding the blood detox I have gotten pretty sick every evening around 5. They say that when you detox you can have a "cleansing crisis" which is exactly how I felt. Jim hasn't gotten sick at all but he also hasn't had cancer or chemo before. So hopefully this feeling is because its working and making me better. My scan has been scheduled for October 24th so we should know them.
Wednesday, September 26, 2012
What are the Odds?
Well those who know me and those who read my blog know that I'm not a creative person. I'm not a writer in any sort of way. I have horrible grammar and can barely spell (unless its a medical word). Which is why I have a blog and am not writing a book. Well like most people who suck at English I am good at math. I like that math unlike the world is black or white. There is only one answer and its not really subject to interpretation. I only took one math class in college. I took it my firs semester and it was statistics. I would have loved to take more math classes but I didn't need anymore and as much as I loved the class I don't really feel the need to overachieve . Back to my stats class though.Its all about figuring out the odds. So what are the stats on cervical cancer?
What were the chances when I was first diagnosed?
What were the chances of it spreading to my lymph nodes?
What were the chances of it coming back a second and now a third time?
What are the chances of it coming back if I'm able to beat it this time?
What are my chances of survival in 5 years, 2 years, or even a year?
According to the stats. The odds are not in my favor and this isn't a gamble that one would want to take? I have to remind myself though that I'm not a statistic. Those stats were not me and my situation. And for those who do like to gamble, I beat the odds all the time. I beat the odds the day I got diagnosed. At 25 the odds were in my favor that I would never get cancer. So then I ask myself more positive questions about odds that were not in my favor and I still managed to beat?
What are the odds of me being diagnosed?
What are the odds of the cancer coming back a second time and me beating it a second time?
What are the odds of me meeting the most amazing man and be able to call him my husband?
What are the odds of having such amazing supportive friends?
What are the odds that I would sit at home and miss the drunk and crazy patients at the hospital?
What are the odds of having friends that own a condo in Hawaii and them offering it to us free of stay? (Thank you so much Taylor family)
What are the odds that my mom would buy us our plane tickets to Hawaii? (OK those odds were really in my favor but I do appreciate all you do)
There still one odd that I would like to beat in my lifetime.
What are the odds of finding the cure?
- In 2012, an estimated 12,170 new cases of invasive cervical cancer will be
diagnosed in U.S. women.5
- In 2012, an estimated 4,220 U.S. women will die from the disease.5
- Most women with cervical cancer are diagnosed before the age of 50; the median age is 48.3 However, older women remain at risk. More than 20% of new cases are diagnosed in women over 65. Cervical cancer in women younger than 20 is rare.5
- In the U.S., Hispanic women have the highest rate of cervical cancer,
followed by African American, Caucasian, American Indian/Alaska Native, and
Asian American/Pacific Islander women. Mortality rates are highest for African
American women.6
- When detected at its earliest stage, cervical cancer has a 5-year relative survival rate of approximately 91%. For regional disease, it is nearly 57%. If the cancer has spread to distant organs, 5-year survival drops to approximately 16%. In general, the prognosis is affected by the extent of disease at the time of diagnosis.3
- In a recent study the two-year survival rate for recurrent cervical cancer was 18.5%. Median survival was 8 months (95%CI, 7-10 months).
What were the chances when I was first diagnosed?
What were the chances of it spreading to my lymph nodes?
What were the chances of it coming back a second and now a third time?
What are the chances of it coming back if I'm able to beat it this time?
What are my chances of survival in 5 years, 2 years, or even a year?
According to the stats. The odds are not in my favor and this isn't a gamble that one would want to take? I have to remind myself though that I'm not a statistic. Those stats were not me and my situation. And for those who do like to gamble, I beat the odds all the time. I beat the odds the day I got diagnosed. At 25 the odds were in my favor that I would never get cancer. So then I ask myself more positive questions about odds that were not in my favor and I still managed to beat?
What are the odds of me being diagnosed?
What are the odds of the cancer coming back a second time and me beating it a second time?
What are the odds of me meeting the most amazing man and be able to call him my husband?
What are the odds of having such amazing supportive friends?
What are the odds that I would sit at home and miss the drunk and crazy patients at the hospital?
What are the odds of having friends that own a condo in Hawaii and them offering it to us free of stay? (Thank you so much Taylor family)
What are the odds that my mom would buy us our plane tickets to Hawaii? (OK those odds were really in my favor but I do appreciate all you do)
There still one odd that I would like to beat in my lifetime.
What are the odds of finding the cure?
Whats the plan
So whats the plan now? Do I just give up and die. Do I do chemo that might help me but might also just make me sicker than I am now? Should I just call in hospice to make sure I'm comfortable. My oncologist told me that if I did chemo and was lucky enough to go into remission it would just come back in a year. And I thought about it a lot but at the end of the day all those options SUCK. I choose none of the above. I'm choosing to fight. I'm choosing to be part of finding a cure. I'm choosing to live. Sure I will have sad days but I refuse to let this cancer win.
I received a call from the doctor in Maryland yesterday. And I really like this doctor. He looked at my scans and said that its really hard to see the size of the tumors on the Pet Scan and requested a CT scan with contrast. He also said that the tumors might be too small and explained the need for having bigger tumors because they would be able to grow more TCells. He said that he would never want to wish anyone bigger tumors but that it would make his job easier. So he stated that if he was going to order a CT scan and pursue his trial it would be best to wait 6weeks to do it. So that were my options. I could start chemo now, which is the standard treatment, and hope to go into remission but have it most likely just return. Or do I wait 6 weeks and let this cancer grow so I can be a guinea pig on some experimental trial that might be the cure, might put me into remission, or might make the cancer spread even more.
Again all i have are sucky choices. I had to go with my gut though. I have said that if I had to start chemo today I believe the chemo will kill me. I have been drawn to the clinical trial since the first time I read about it. So I'm going with the clinical trial. I know some of you are yelling at me from home right now about how I could possibly wait and do nothing. Well I'm not doing nothing. Jim and I are trying more alternative methods right now. You hear about people that say they cured their disease doing this or that. So we are trying this and that. We are starting with a 10 day juice cleanse that is said to rid your body of all the bad toxins. Following that we will follow a strict organic diet with lots of raw veggies. I am also trying the baking soda and molasses thing along with the hydrogen peroxide in water. The way I see it is when this next scan happens I will only receive good news. If my tumors regress or stay the same than that's good news and means that maybe diet can cure cancer and I will continue on with my diet. If the tumors are bigger than I get to go into the clinical trial which will hopefully find me a cure.
I received a call from the doctor in Maryland yesterday. And I really like this doctor. He looked at my scans and said that its really hard to see the size of the tumors on the Pet Scan and requested a CT scan with contrast. He also said that the tumors might be too small and explained the need for having bigger tumors because they would be able to grow more TCells. He said that he would never want to wish anyone bigger tumors but that it would make his job easier. So he stated that if he was going to order a CT scan and pursue his trial it would be best to wait 6weeks to do it. So that were my options. I could start chemo now, which is the standard treatment, and hope to go into remission but have it most likely just return. Or do I wait 6 weeks and let this cancer grow so I can be a guinea pig on some experimental trial that might be the cure, might put me into remission, or might make the cancer spread even more.
Again all i have are sucky choices. I had to go with my gut though. I have said that if I had to start chemo today I believe the chemo will kill me. I have been drawn to the clinical trial since the first time I read about it. So I'm going with the clinical trial. I know some of you are yelling at me from home right now about how I could possibly wait and do nothing. Well I'm not doing nothing. Jim and I are trying more alternative methods right now. You hear about people that say they cured their disease doing this or that. So we are trying this and that. We are starting with a 10 day juice cleanse that is said to rid your body of all the bad toxins. Following that we will follow a strict organic diet with lots of raw veggies. I am also trying the baking soda and molasses thing along with the hydrogen peroxide in water. The way I see it is when this next scan happens I will only receive good news. If my tumors regress or stay the same than that's good news and means that maybe diet can cure cancer and I will continue on with my diet. If the tumors are bigger than I get to go into the clinical trial which will hopefully find me a cure.
What does curable mean
During my last post I told you about my last 2 fights with cancer. But its time to fast forward to this year. With this blog Jim and I (and the dogs) will be able to share with you my fight with cancer. I have found this blog to be like a diary and I am sure that I will spend some days crying as I write in it. I feel this is a great opportunity for me to share my feelings and share with all of you the reasons behind the decisions I make.
So on the last post I ended thing last September when my scan was clean. In March Jim and I got married after spending the last 7 years together. 2012 was going to be our year for good things to happen. We were happy, we were thankful for everything and we were in love with each other. In April I had a follow up scan and again everything showed no evidence of disease. Our lives together were going fantastically. In August we saw a fertility specialist to see what our options were to have a baby together. After some testing the doctor told me that it appeared my ovaries would not be able to produce eggs to have our own biological child. It was upsetting but I got over and we figured out our plan to do embryo adoption.
Last month I noticed that I started to have some epigastric pain. We had spent a lot of time camping and ate a lot of junk food so I wrote it off to gas and constipation. After a couple of weeks the pain started getting worse. When I woke up to go to work one day I could no longer take the pain. I called into work and went into the emergency room. While at the emergency room they did a CT scan. Jim started getting a little antsy and decided to go for a walk. He didn't come back until the end of the conversation with the doctor. The doctor came in and told me they had found a mass on my abdomen. It was fluid filled but they had no idea what it was and said that it was possibly an abscess or possibly cancerous. It was devastating and scary. I scheduled an appointment with my doctor for a couple days later. When I saw the doctor she stated some concern about losing weight and my low blood pressure. I stayed and got fluids and there was a biopsy ordered for a couple days later. I did the biopsy a couple days later and receive the results the following order. No Evidence of malignancy. It was amazing news but they still didn't know what the mass was so I was referred to my surgeon. When my surgeon saw me she stated that it was most likely a cyst on the ovary that they had relocated. She decided to order a Pet Scan for precautions even though I wasn't due for one for a couple of months. She told me before we left that everything looked fine and not to be concerned if the ovary and cyst lit up on the pet scan. I continued to have quite a bit of pain but Jim and I were still able to get away and go camping for a weekend. I had went into my Pet scan shortly after. As usual I call the place that does my Pet Scan and had my results faxed over to me before my follow up doctors appointment. That piece of paper read the last thing that I expected. I faxed it over to my mom before i even finished reading it. There were a few different lymph nodes, spots in the retroperitinium, spots on the spleen that were all lighting up. There was also spots on the lungs but however they didn't light up on the Pet Scan. There was no guarantee that it was cancer and I desperately tried to think of anything else that it could be. I immediately faxed over the paperwork to my surgeon but her office said she wouldn't be in until the following week. I was still worried but I'm not sure I really grasped how bad it was. My pain was suppose to be from a cyst on my ovary not cancer. I was moving on with my life and was making plans to start a family.
My surgeon ended up getting my results later that day and called me on the phone. She stated that the pet scan looks really concerning. She said that the nodes in the subclavicular would be the easiest to biopsy. She also said that if the biopsy came back positive that the cancer would not be curable. NOT CURABLE! How could this be. I'm 28 years old. I just got married. We were planning on having a baby. How could I possibly have not curable Cancer. My oncologist also called me that day and asked to see me sooner. When I went to the appointment with my oncologist I was still hoping that she would come up with some explanation other than cancer. She didn't have one. She ordered the biopsy and ordered the chemo so that we could start fighting this again right awake. Through the next couple weeks I was on an emotional roller coaster. I would randomly start crying thinking about how my husbands life would be after I died. I cried at how upset my family would be. I thought about how horrible my life would be the weeks and months before I died. I had no fight or hope left in me. I knew that if I did chemo that the chemo would kill me. My counts were still not back to baseline and i was struggling to keep my weight at 90lbs. I did find a clinical trial that was taking place in Maryland that instead of chemo they focus more on immunotherapy and using the body to fight the cancer. When I mentioned it to my oncologist she thought it was a great idea. I remember her words, " I can't cure you but these trials might offer something". There it was that stupid word CURABLE. So we got everything sent off to Maryland. The nurse from Maryland called me a couple days later and said that she didn't think my tumors were big enough and asked for a CD of the pet scan so I sent it off and waited.
This last Wednesday I went to my oncologist appt and got my biopsy results. I think it was the worst day of my life. This was worse then the day I was first diagnosed. When the doctor told me they were positive I immediately started crying. I could no longer hold it in and I didn't want to.
So on the last post I ended thing last September when my scan was clean. In March Jim and I got married after spending the last 7 years together. 2012 was going to be our year for good things to happen. We were happy, we were thankful for everything and we were in love with each other. In April I had a follow up scan and again everything showed no evidence of disease. Our lives together were going fantastically. In August we saw a fertility specialist to see what our options were to have a baby together. After some testing the doctor told me that it appeared my ovaries would not be able to produce eggs to have our own biological child. It was upsetting but I got over and we figured out our plan to do embryo adoption.
Last month I noticed that I started to have some epigastric pain. We had spent a lot of time camping and ate a lot of junk food so I wrote it off to gas and constipation. After a couple of weeks the pain started getting worse. When I woke up to go to work one day I could no longer take the pain. I called into work and went into the emergency room. While at the emergency room they did a CT scan. Jim started getting a little antsy and decided to go for a walk. He didn't come back until the end of the conversation with the doctor. The doctor came in and told me they had found a mass on my abdomen. It was fluid filled but they had no idea what it was and said that it was possibly an abscess or possibly cancerous. It was devastating and scary. I scheduled an appointment with my doctor for a couple days later. When I saw the doctor she stated some concern about losing weight and my low blood pressure. I stayed and got fluids and there was a biopsy ordered for a couple days later. I did the biopsy a couple days later and receive the results the following order. No Evidence of malignancy. It was amazing news but they still didn't know what the mass was so I was referred to my surgeon. When my surgeon saw me she stated that it was most likely a cyst on the ovary that they had relocated. She decided to order a Pet Scan for precautions even though I wasn't due for one for a couple of months. She told me before we left that everything looked fine and not to be concerned if the ovary and cyst lit up on the pet scan. I continued to have quite a bit of pain but Jim and I were still able to get away and go camping for a weekend. I had went into my Pet scan shortly after. As usual I call the place that does my Pet Scan and had my results faxed over to me before my follow up doctors appointment. That piece of paper read the last thing that I expected. I faxed it over to my mom before i even finished reading it. There were a few different lymph nodes, spots in the retroperitinium, spots on the spleen that were all lighting up. There was also spots on the lungs but however they didn't light up on the Pet Scan. There was no guarantee that it was cancer and I desperately tried to think of anything else that it could be. I immediately faxed over the paperwork to my surgeon but her office said she wouldn't be in until the following week. I was still worried but I'm not sure I really grasped how bad it was. My pain was suppose to be from a cyst on my ovary not cancer. I was moving on with my life and was making plans to start a family.
My surgeon ended up getting my results later that day and called me on the phone. She stated that the pet scan looks really concerning. She said that the nodes in the subclavicular would be the easiest to biopsy. She also said that if the biopsy came back positive that the cancer would not be curable. NOT CURABLE! How could this be. I'm 28 years old. I just got married. We were planning on having a baby. How could I possibly have not curable Cancer. My oncologist also called me that day and asked to see me sooner. When I went to the appointment with my oncologist I was still hoping that she would come up with some explanation other than cancer. She didn't have one. She ordered the biopsy and ordered the chemo so that we could start fighting this again right awake. Through the next couple weeks I was on an emotional roller coaster. I would randomly start crying thinking about how my husbands life would be after I died. I cried at how upset my family would be. I thought about how horrible my life would be the weeks and months before I died. I had no fight or hope left in me. I knew that if I did chemo that the chemo would kill me. My counts were still not back to baseline and i was struggling to keep my weight at 90lbs. I did find a clinical trial that was taking place in Maryland that instead of chemo they focus more on immunotherapy and using the body to fight the cancer. When I mentioned it to my oncologist she thought it was a great idea. I remember her words, " I can't cure you but these trials might offer something". There it was that stupid word CURABLE. So we got everything sent off to Maryland. The nurse from Maryland called me a couple days later and said that she didn't think my tumors were big enough and asked for a CD of the pet scan so I sent it off and waited.
This last Wednesday I went to my oncologist appt and got my biopsy results. I think it was the worst day of my life. This was worse then the day I was first diagnosed. When the doctor told me they were positive I immediately started crying. I could no longer hold it in and I didn't want to.
The history of my story
Lets back way up to 2007. In 2007 I went to the doctor for my annual pap smear. All the cells on the pap smear looked fine. I did test positive for HPV and the strains that came back from the lab stated that they were not the same strains that caused cervical cancer and to come back in a year. I was in nursing school at the time and working 3 jobs so a year later ended up being about 14-15months later.
So then in 2008 I went for my normal pap smear. I few days later I received a call from the doctor stating that there was some abnormal cells and that I needed to see another doctor to have a LEEP/ Cone Biopsy. So the appointment was made for me to meet my new doctor. When I met with my doctor he explained that I had pre-cancerous cells on my cervix. He stated that we had caught it earlier and it wasn't cancerous. He stated I need to have a cone biopsy done to cut out the precancerous cells. He said that I would not to go have pap smears done every 6 months to monitor if any abnormal cells come back after the biopsy. Due to the doctors busy schedule and my school and work schedule the cone biopsy wasn't scheduled till a few months later in January. The said that was fine that i didn't have cancer and that it was slow growing.
In January my husband Jim (who was my boyfriend at the time) took me to the hospital and I had the procedure done. I went home later that day and although I was sore I was doing fine. I had a follow up appt scheduled for 2 weeks later. About a week before my appointment I received a phone call from my doctors office saying that the doctor wanted to see me that day and asked if I could come in right then. I said yes and immediately called Jim frantically. I was a nursing student and i knew then that doctors don't call you in early unless something is wrong. I then called my sister to brainstorm what could possibly be wrong.
At the appointment I was stuck in the waiting room for about 15 minutes before I was taken to the doctors office. I wasn' taken in an exam room I was taken to his actual office. It was then that he came in and told me that I had cancer. I don't think I really comprehended what was going and was actually just in shock. He told me that I would need to go see a different doctor to decided if I would need a partial or a full hysterectomy. I was devastated that I wouldn't be able to have children. I was 24. People don't have hysterectomies till their 50's. I called Jim told him what was going on. I called my sister to tell her and she called the rest of the family. Jim came over that day and we went to the SPCA to look for a puppy. We didn't find one but it helped lift my spirits.
Over the next week I did a lot of research and found a procedure called a trachelectomy it was a fertility sparing procedure where they take out the cervix and put a sling in place. It sounded like the answer to my prayers. When I went to the appointment at my gynecological office in Fresno we told them about me wanting to do the trachelectomy. They said that they didn't do those in Fresno and that they would refer me to UC Davis. So I went to UC Davis and the doctor told me she would try the trachelectomy but that if there weren't clear margins when they did it then they would have to do a full hysterectomy. I remember waking up after the surgery and asking what surgery I had done. The nurse looked at the chart and told me I had an ovarian transposition. I was kind of confused but then the doctor came in and told me they had found the cancer in the lymph nodes. She said that because of the lymph node involvement I would need chemo and radiation. She said that she moved the ovarian out of the radiation field so that I wouldn't go through menopause and could possibly retrieve eggs later.
From there I went on to do 6 weeks of chemo and radiation followed by weeks of internal radiation. It was very difficult and I was horribly sick. It all paid off though. In may I graduated from the nursing program and found on my next scan that I was cancer free. It was a great feeling and I couldn't wait to move on with a normal life.
Lets fast forward to spring 2011. That month was a very difficult month for Jim and I. We had found out that my mother had a brain tumor, and Jim's grandfather had went into the hospital. I had had clear scans for almost 2 years and was feeling better and better everyday up until this time. I had went in for my normal 6 month scan and a lymph node was lighting up in the epigastric area. One doctor said to watch it and rescan in 6 months. My other doctor felt that it was still treatable and critical to know the results. They attempted to do a CT guided ultra sound but were unable to get it so I went back to my surgeon. After surgery my surgeon came in and informed me that my lymph node was positive for malignancy and said that I would need more chemo and radiation. It was upsetting but if more chemo and radiation was what it took to beat this cancer then lets just do it and get it done. It sucked. I was horribly sick and struggled with weight loss. I swore to myself that I would never put my body through that again. My counts constantly dropped and my body gave everything trying to fight that cancer. And it all played off because my following scan showed No Evidence of Disease. I had one my fight again.
So then in 2008 I went for my normal pap smear. I few days later I received a call from the doctor stating that there was some abnormal cells and that I needed to see another doctor to have a LEEP/ Cone Biopsy. So the appointment was made for me to meet my new doctor. When I met with my doctor he explained that I had pre-cancerous cells on my cervix. He stated that we had caught it earlier and it wasn't cancerous. He stated I need to have a cone biopsy done to cut out the precancerous cells. He said that I would not to go have pap smears done every 6 months to monitor if any abnormal cells come back after the biopsy. Due to the doctors busy schedule and my school and work schedule the cone biopsy wasn't scheduled till a few months later in January. The said that was fine that i didn't have cancer and that it was slow growing.
In January my husband Jim (who was my boyfriend at the time) took me to the hospital and I had the procedure done. I went home later that day and although I was sore I was doing fine. I had a follow up appt scheduled for 2 weeks later. About a week before my appointment I received a phone call from my doctors office saying that the doctor wanted to see me that day and asked if I could come in right then. I said yes and immediately called Jim frantically. I was a nursing student and i knew then that doctors don't call you in early unless something is wrong. I then called my sister to brainstorm what could possibly be wrong.
At the appointment I was stuck in the waiting room for about 15 minutes before I was taken to the doctors office. I wasn' taken in an exam room I was taken to his actual office. It was then that he came in and told me that I had cancer. I don't think I really comprehended what was going and was actually just in shock. He told me that I would need to go see a different doctor to decided if I would need a partial or a full hysterectomy. I was devastated that I wouldn't be able to have children. I was 24. People don't have hysterectomies till their 50's. I called Jim told him what was going on. I called my sister to tell her and she called the rest of the family. Jim came over that day and we went to the SPCA to look for a puppy. We didn't find one but it helped lift my spirits.
Over the next week I did a lot of research and found a procedure called a trachelectomy it was a fertility sparing procedure where they take out the cervix and put a sling in place. It sounded like the answer to my prayers. When I went to the appointment at my gynecological office in Fresno we told them about me wanting to do the trachelectomy. They said that they didn't do those in Fresno and that they would refer me to UC Davis. So I went to UC Davis and the doctor told me she would try the trachelectomy but that if there weren't clear margins when they did it then they would have to do a full hysterectomy. I remember waking up after the surgery and asking what surgery I had done. The nurse looked at the chart and told me I had an ovarian transposition. I was kind of confused but then the doctor came in and told me they had found the cancer in the lymph nodes. She said that because of the lymph node involvement I would need chemo and radiation. She said that she moved the ovarian out of the radiation field so that I wouldn't go through menopause and could possibly retrieve eggs later.
From there I went on to do 6 weeks of chemo and radiation followed by weeks of internal radiation. It was very difficult and I was horribly sick. It all paid off though. In may I graduated from the nursing program and found on my next scan that I was cancer free. It was a great feeling and I couldn't wait to move on with a normal life.
Lets fast forward to spring 2011. That month was a very difficult month for Jim and I. We had found out that my mother had a brain tumor, and Jim's grandfather had went into the hospital. I had had clear scans for almost 2 years and was feeling better and better everyday up until this time. I had went in for my normal 6 month scan and a lymph node was lighting up in the epigastric area. One doctor said to watch it and rescan in 6 months. My other doctor felt that it was still treatable and critical to know the results. They attempted to do a CT guided ultra sound but were unable to get it so I went back to my surgeon. After surgery my surgeon came in and informed me that my lymph node was positive for malignancy and said that I would need more chemo and radiation. It was upsetting but if more chemo and radiation was what it took to beat this cancer then lets just do it and get it done. It sucked. I was horribly sick and struggled with weight loss. I swore to myself that I would never put my body through that again. My counts constantly dropped and my body gave everything trying to fight that cancer. And it all played off because my following scan showed No Evidence of Disease. I had one my fight again.
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