I have a "Variant"

It's Thanksgiving and I have many, many things to be thankful for. I need to constantly remind myself of that. Ironically, I have my health.

I have been having pelvic pain and I naturally think I have ovarian cancer. I had migraines this summer and I thought I had a brain tumor. My oncologist and her nurse must love me. I call them nonstop and ask them my 101 questions.

My school insurance did not cover my genetic testing so I decided to wait until I switch jobs. This insurance does. It's still very expensive but not the $3100. After four weeks, four long weeks I finally got my results. I'm BRCA 2 negative. A yea on that one. However, I have a variant on my BRCA 1. I was told that all those that tested positive for this variant were Asians and it seems to be of no concern. The variant is of "uncertain significance." I researched, okay, I only Googled this variant but I found very little information about it. There's an article concerning women in Shanghai and then random articles. I spoke with the test center there and asked them how many people they tested. They said three and all three were Asians. That's a very small sample population and I made that third person. They were not able to tell me how many Asians they tested either. So...my test is inconclusive. I'm negative several thousands and the test was inconclusive.

Let me explain the significance of this test. The genetic testing allows us to know if we have a mutation called the BRCA1 or BRCA2. These mutations put us at a greater risk of getting breast cancer, a recurrence, ovarian cancer or other cancers. Most women that test positive tend to get a bilateral mastectomy and then a oophorectomy.

In January I was planning on giving my reconstruction a second try. Depending on my test result, I was going to get a bilateral if it came back positive. One minute I want to have a bilateral so I won't have to worry about lumps or have any regrets in the future if I had a recurrence. The next minute I fear having another surgery to remove a body part. Also, if I can have a child, it would be nice to be able to breast feed my child. I fear my reconstruction not going well again. I fear my lack of mobility and the pain. I fear having to "start over again."

This variant that everyone seems to find insignificant really upsets me. I now have to make a decision based soley on my own. I have to live the repercussion all on my own. Granted, I need to be grateful that I can make this decision. Some women come back a clear cut positive. I need to get over it. I need to weigh the pros and cons and not to have any regrets. Anyone out there that is Asian, have BC and has a BRCA 1 variant should e-mail me. Sigh.

Okay, that's enough self pity for me. It's cold today. Sammy is pestering me to play and adore him. Happy Thanksgiving and let me know if you have a variant!

The thing on my head called "The Wig"

I've looked and looked but this is the only picture I have on my computer of me wearing my wig. This is me and my niece, Sivanah, in May of 2006. Don't we look like mother and daughter with this hair cut?

Of course, I did not like my wig. There will be very few people that will actually like their wig. Just like most cancer patients, losing my hair was very, very traumatic since I usually sported a long length. Everyone told me they liked my wig and that was very sweet of them.

I chose to finish out my 2005-2006 school year with a wig because I felt my students went through enough transition with me already. They didn't need a daily reminder that I was fighting cancer or for me to look sickly. I wanted to give them as much normalcy as possible.

I still remember walking in that first day with my wig. Thankfully, I went from my long hair to short before getting my wig. I had a little girl that had curly hair compliment me on my new "cut." She even asked me how I styled it.

A parent I spoke to a year later told me that she had a conversation with her son about my wig. He never even realized that it was a wig. Of course, all the adults knew but I guess and hope that my kids never knew. I was very open with them about most aspects of my treatments except the part that I lost my hair.

I used to be a bangs person. I hated the bangs but Bonnie, my wig person, told me that bangs created a most natural look. The wig felt like a helmet. It usually came off the moment I got home.

One positive thing about the wig is that I simply slipped it on in the mornings and I was done. I didn't need to style it or even comb it. Bonnie "styled" it for me. One bad thing was that I could have easily destroyed my wig if I came into close contact with fire or from heat from the oven.

I have two wig stories to share. I washed my wig and I had it out to dry. I had a plastic form that I laid my wig on and stuck it in our tub to dry. RJ was working late that night. He went into the bathroom and thought I drowned. I was sleeping peacefully in bed.

The temperature was easily in the 90's and 100's in May. I remember waiting at the 620 and Parmer light. I was two minutes from home but just couldn't take it anymore. I was dying of heat even with the AC running. I took off my wig in the car and remember seeing the shocked expression on the man's face in the car next to me.

The wig made it much more difficult when my hot flashes came. It felt as if it retained a minimum of 10 degrees more heat.

I would recommend anyone that losses their hair to get a wig, even an inexpensive one. After that patch of children, I never wore my wig much. However, it is nice to have for special occasions because I was a bride's maid at Maria's wedding. I had my students' graduation. I grew to love my bandanna and scarves but the wig was a nice insurance. It was nice for the days that I wanted to walk around feeling like a non cancer patient.

Chemo and I

RJ-my napping partner with me on the weekend.


Sammy-My sleeping parther throughout chemo.

I was on chemotherapy from February 2006 to June of 2006. I was on Adramycin and Cytoyan for two months followed by Taxol for three months. I was then on Herceptin for seven more months but they don't consider Herceptin to be "chemo" since it doesn't have too many harsh side effects. For legal reasons, the pharmaceutical companies will always list all the side effects. My oncologist told me that I won't get them all but I always liked preparing for the worse so it will be easier if I don't get them all. Since I'm recapping, I'll list the toll chemo had on my body. Remember, the A/C combo is harsh and that is why they start you with that. Taxol almost seemed like a piece of cake compared to A/C.

1. My hair-gone in 14 days and was sporting Sinad O'conner's due for several months. Gone were my eyebrows, eyelashes and the rest of my body.



2. Fatigue-I taught throughout my chemo. There were mornings that I laid on the floor after getting myself out of bed to make myself get up and get dressed. There were evenings where I would sit down on the sofa and pass out immediately. RJ and I would just nap together on the weekends.



3. My nails-it thinned out and had ridges in them. I also turned a dark color and I recall a student of mine asking if I bruised them.



4. My taste bud-even water didn't taste good anymore. I had to drink diluted juice for months. The first two bites were great and then the rest would taste bland. The pharm label it as "metallic" taste. I just found everything to be weird and bland tasting.



5. My female cycle-gone. They call it chemopause. Never wanted it back so badly.



6. Sleep-between steroids and chemopause, I would be able to fall asleep but wake up after several hours. This was not conducive at all, especially when I had to wake up at 5:30 am to teach students.



7. White blood counts-down because my body is "attacking" the chemo. They would give me Neulastra shot, each a whopping $6,000! (Always have insurance!!) The Neulastra would make my bones ache because it was producing more white blood cells. I had to tell my parents and students to keep their children at home of they were sick. Lysol and hand sanitizers were my best friend this school year.



8. Red blood counts-I started to become anemic which didn't help me being fatigued. They gave me another shot Arenest, only a mere $2,000 per shot. Right.



9. My skin-it felt dry and had a tendency to peel more. My heel took the grunt of that. It started peeling off in thick layers. I had to be very careful not to get it infected since my white counts were so low.



10. Feeling normal-I just felt off. I was almost as if I was suffering from a hangover or had the flu. I slept a great deal over the weekend. My baby, Sammy, and I slept together for hours over the weekends and they days I got my infusions.



11. My bowl movement-I won't go into details but, yes, it even effect this!



12. My appetite-the steroids made me get up at 4:00 am to have a slice to toast. The weird taste in my mouth didn't want me to consume anything. Luckily, my mom was in town for three weeks and fed me good healthy food and stocked up my freezer too. Surprisingly I did not gain weight from the chemo like most women. I'll get to my weight gain at a future post.
13. I was hoping to stay away from unlucky 13 but I always had fear of being nauseated. I felt nauseated twice but only threw up once.

Well, I guess that is it. I'm sure it did a number in my body that I cannot actually pin point and that there may be some long term repercussions, like whether or not I'm still fertile. Only time and technology will tell. I never got blood clots or the 100 other items the pharm companies list on their drugs. However, I find myself to be very lucky because I know many other women that were hit a great deal harder from the chemo. My advice to try to eat well, exercise and keep yourself mentally busy. I walked most days, even if it was to just get mail. Working tired me out but also good because it made my five months of chemo not drag on so much.

3 Billion Dollars for Cancer Research

Driskall Hotel: Proposition 15 Celebration Party

Texan voted on November 6, 2007 to have Proposition 15 pass. Proposition 15 will allocate 3 billion dollars to fund cancer research for the next ten years in Texas. I had goosebumps when it was announced because the early polls did not show an overwhelming amount of votes for it. The signs up and down 183 about too much funding and too little cure signs didn't sit well with me either.

It doesn't matter now because we did it! It passed! I would love to think that we can find a cure because of this. I know too many people who have been touched by this horrible disease.

My "Stat Sheet"

My new stat sheet is my pathology report. Understanding your pathology report is vital and is used often in the cancer world. Instead of asking someone you just met about where they work or what their favorite hobbies are you ask them about their staging, whether or not their estrogen positive, their treatment and all the other cancer lingo.

This is my stat sheet:

My tumor was roughly 1.2 cm
I'm stage 1
No lymph node involvement
ID or invasive ductal carcinoma
7/9 on Bloom-Richardson
Intermediate nuclear grade
ER/PR positive
Her2 positive


Try out these links to help decode all this:

http://www.thedoctorsdoctor.com/translating.html

http://www.y-me.org/publications/generalpubs/read_pathology_report.pdf