I moved my blog to google blogger so I will be able to mobile blog. Click on the link below to visit the new blog. I will only post on the new blog now. If you were following me before, you will have to sign up to follow my blog again (sorry!). Mobile blogging makes it easier for me to keep posting while I'm in the hospital or other treatments. I can update posts from my phone! All photo updates and other information will remain on my master page - www.theprincessandthec.com
I received two early morning phone calls today. The first at 6:30am was from MD Anderson in Houston, Texas. Kaiser does not cover patients going out-of-network, so I was first informed of the necessary deposit... $25,097 before my first appointment. That sparked some anger. Why would I pay $25K to go across the country and be told I am not a candidate for their fertility sparing technique? The center director, who was VERY nice and understanding, explained that any money not used would be returned to me if I wanted to forgo treatment there. I'm not sure what the cost is, but if I decide to pursue a second opinion from them, I would have to pay for the pathologist to test my slides, the radiologist to read my PET scan and the Doctor for his physical exam and time. I thanked her for her time and said I would call her after we talked to Stanford. While I am expecting to pay the same amount of money, I prefer to be closer to home. Then at 7:30am, I received a call from my oncologist’s office. He wants to see me at 10:30am today. No word on what the appointment is about, so my mind is left to wonder. Do doctors ever call you in for good news? He has the results of my PET scan which will show if the cancer has metastasized to other areas of my body. Only time will tell me if he has good news or bad news. I just have to figure out what to do for the next 2.5 hours before the appointment. My mind is not at rest. For those friends and family around me lately, I’m sorry if I am acting angry towards you. I’m angry at my body and don’t know how to navigate through the feelings of anger, fear and anxiety.
Time, options and choices - 3 things I feel like I don't have a lot of. I just finished my last day at work today, which allows me to focus all of my energy on treatment options. I should have been focusing on this all week, but I’m still addicted to my work. I’m sure part of it has to do with not believing this is all real. My life feels very surreal all of a sudden. I wish I could ignore it but I can’t. I have a considerable amount of back pain and cramping that doesn’t let me forget. The PET scan on Saturday went well. Once I was injected with the radioactive sugar, I only had to sit in the “No-No” room for 30 minutes. No talking, no texting, no anything but laying there. When I walked into the room with the scanner, I didn’t survey my surroundings. Big mistake! I just laid down where they told me to and listened to the directions. You go back and forth in a tube 3 or 4 times during the 28 minute scan. They told me I could have my eyes open or closed, I just could not move. Every time I closed my eyes to try and relax the machine would move again. When I opened them and saw how far in the small tube I was, it freaked me out. I tried to calm myself down by imagining I was in a kids slide. It didn’t help very much. What did help was when the table moved so far back in the tube that I came out the other end. I didn’t realize that there was a back opening. I made a mental note as I walked out of the PET/CT scan trailer – LOOK at your surroundings, especially in the hospital! If you’re wondering why I said trailer, it’s because the scanner that Kaiser has is a traveling scanner. There were actually three of these trailers there on Saturday. I posted a picture in the gallery if you want a visual. Of course, I couldn’t take one inside although I was tempted.
Now back to time, options and choices… My doctors at Kaiser do not recommend that I wait much longer before the surgery. They said a week is okay, but two or more is not recommended. They are concerned about how aggressive the cancer is and how quickly it grew. My tumor is currently 4 centimeters or the size of 4 lead pencil tips.
Options - I have the option to get a second opinion. Which part of me wants and part of me doesn’t. I want to trust that my current doctor’s have my best interest at heart. But there are too many stories about Kaiser and HMO’s, etc. that worry me. Tomorrow, my mom and I are making calls to Stanford and the MD Anderson Cancer Center in Houston Texas. The doctor’s in Texas said they could see me on Tuesday or Wednesday of this week. They also believe they may have some fertility sparing options because of my age. When I asked them what those options were, they said we could talk about it at the appointment. I don’t know if I want to fly across the country if they are going to tell me about the same options I have here. From conversations with my doctor’s and research on the web, the options I know of are as follows. One – a Radical Trachelectomy where the surgeon removes the cervix, parametrium, surrounding lymph nodes, and upper 2 cm of the vagina. The uterus is then attached to the remaining vagina. A cerclage is placed where the cervix used to be to allow the patient to carry a pregnancy. My doctor’s at Kaiser have said that I am NOT a candidate for this procedure because they are only currently preformed on women with a tumor 2 centimeters or less in size. The pregnancy success rates and full term delivery statistics are not impressive either. Two- I could go to a Fertility Clinic like Stanford has. I could undergo the 3-4 week process of injecting myself with hormones to stimulate my ovaries and have the eggs removed and frozen. I would have to wait until my ovaries return to the normal size before I could move forward with the hysterectomy. Again, my doctor’s do not suggest putting the surgery on hold to do this. If I have the surgery now, there is a chance I could harvest my eggs two months after the surgery (once I am fully healed). I could delay chemo and radiation for a month in order to attempt to preserve my eggs.
All of these options and choices could change drastically once I get the results of my PET scan. If the scan shows the cancer has spread, I have to call an audible and figure out my next move. My dilemma boils down to this… I trust my doctor’s at Kaiser and I want to believe they are giving me all of the options available based on my condition. However, I would feel like a fool for going under the knife when I am not 100% certain of my decision. Do I forgo the second opinion and have the surgery on the 13th or do I take another week to be 100% certain? I want to fight for my eggs. I want to fight for the option to have a mini Britni someday. Even if I ultimately choose to adopt children, I want the OPTION to choose between my eggs or adoption. You can’t always get what you want. Like I have said before, it is all very surreal and overwhelming. These are decisions I never thought I would have to make at 26.
In between my calls to Stanford, Texas and Kaiser tomorrow, Mom and I are going to get a mani-pedi. Then my dad is BBQ’ing a yummy family dinner. I’ll get to spend some relaxing time with not only my parents, but my nieces, nephew and friends too. I hope this helps me relax and refocus my energy on not only fighting the cancer, but fighting for my options too.
You never know what tomorrow is going to bring.
I'm on my way to my first PET (positron emission tomography) scan. Not to say that I will have to have several of these, it's just the first in this lifetime. If you are unfamiliar with PET scanning, let me explain what I know. I'll be injected with a small amount of radioactive glucose. After the injection, you rest in a quiet room for about an hour. This gives the glucose time to go through your bloodstream. Then it's into the scanner. From what I've been told, the actual scan lasts about 30 minutes. The result is colorful image of my insides. Cancer cells metabolize sugar faster than normal cells. PET scan results show the areas of abnormal glucose metabolism and exactly where the areas are located. This will help my doctors determine if the cancer has spread to another area of my body. Is it weird that I'm excited about this? I'm looking forward to a couple of hours of peace and quiet. Time to go... I'll post again soon!
I'm off to Kaiser at Morse Avenue today for my lab prep. I have to have an EKG, Chest X-ray and blood work done. Then it's off to member services to fill out paperwork for the surgery and disability. Should be a fun morning! Mom and I are stopping at Starbucks ahead of time. Since I was wide awake from 2:30 till 4 in the morning because of back pain, I'm definitely going to NEED this coffee!
To Subscribe to my blog, click on the orange RSS Feed Button Below.
I am a 26 year old cancer "ass kicker." In my free time I like to read novels that tug at your heart strings, play with my dogs, dance to any kind of music and (poorly) sing along to whatever is playing. I would not be the person I am today without my loving family and friends who support me in everything I do and laugh at my bad jokes.