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?

• 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).

When I look at these stats I can't help but ask myself what are my odds?
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.

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.

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.