The Start of My New Year

I must have taken a "break" in 2007 concerning my health. I had my MRI last week, met with my oncologist this past Monday, had more blood work done on Tuesday, had a consult with a new plastic surgeon today and will be seeing a breast specialist tomorrow. If I'm lucky, I won't have any appointments on Friday. Phew! My MRI came back negative. Yea!

My visit with my oncologist was very helpful. I am much more knowledgeable now about cancer treatments and cancer lingo. I asked her to run a few test for me, some of them new. As long as my insurance covers them, I'm good to go. I've been on Tamoxifen for a year and a half now. There's a test out to see if I am metabolizing it correctly. This test is fairly new and may not be accurate but I'm willing to give it a try. Five years on a drug is a long time if I am not gaining anything from it but weight and blurry vision! I am also having the CA125 test to see if there's any risk of ovarian cancer since I'm a possible BRCA 1 positive. Back to the Tamoxifen, it can increase your edrimetrious lining. I am getting an ultrasound to track the changes. We also talked in great detail about getting a bilateral and/or reconstruction. A bilateral means NO BREAST feeding. The good news is that I SHOULD be able to have a biological child. She also mentioned the DIEP Flap surgery where they take the fat from your abdominal and attach it to make your breast. It's different from the TRAM Flap because no muscles are cut.
http://www.microsurgeon.org/diep_flap.htm This website gives a detailed description of the procedure.

My visit with the plastic surgeon, possibly one of the best in town, told me he does not perform this procedure. He highly recommends using my own chest muscles and a then an emblem skin to hold in an expander. The whole process will take about 9 months. I'll be hospitalized for one to two nights. I probably will be pretty home bound, no driving for about two weeks. I should feel almost normal by one month. The joy of having to do this all over again. Sigh.

I spoke earlier today to a fellow survivor that also lost her reconstructed breast to an infection. We know of only each other. I know that there are probably hundreds if not thousands of people out there that lost their reconstructed breast but we know only women that have had successful procedures. On the flip side, maybe there is hope for us!

I will be discussing with the breast specialist tomorrow about a possible bilateral. No decisions will be made soon and I still need to check with my good ole insurance to see what they will cover.

So...more to come.

Happy New Year!

As any new year approaches, I have my long list of new "resolutions." Instead of calling them resolutions, I'm calling them an improved way of living. I will simply dust myself off and get back on my bike if I fall off.

1. I will work out at least three times a week.
2. I will try to eat 70% raw (or higher) and 30% (or lower) cooked food. More on this later.
3. I will continue to try to organize my house, desk at work and car. An uncluttered life is a less stressful life.
4. I will call home and speak to my nephews at least twice a month because they are growing so incredibly fast!
5. I will take time to play, walk or jog Sammy on a daily basis because he's just an amazing dog!
6. I will focus on spending quality verses quantity time with my friends.
7. I will prioritize a date night with RJ at least once a week.
8. I will try to live as healthy as I can and try not to have cancer define my life.
9. I will continue to research alternative living and keep an open mind.
10. I will try to go even greener!

Happy New Year and best wishes for a happy and healthy 2008!

The Smile Never Fades by Bill Bastas

The Smile Never Fades is a book that was put together by Bill Bastas. Bill lost his wife, Michelle, of twenty-two years and vowed to honor those that have been touched by this horrible disease. His book is filled with compelling essays written by survivors and photos taken by him. The book is $35 and the proceeds will go towards cancer research. For more information or to purchase this book click here: http://www.thesmileneverfades.com/thesmileneverfades.html

News 8 did a piece on him and his wife. I was very moved by it and remember e-mailing him that evening to let him know that. I had an e-mail from him the next morning. I checked the time that he replied to me and it was 1:30 AM. He told me that he appreciated my e-mail and that he would never forget me.

His book release party was at the Judge's Mansion on November 28, 2007. He did not recognize me with my hair. When I told him who I was he immediately gave me a huge hug. He was able to recall our conversation from August of 2006 when I first went in to get my picture taken by him! I still had my bandanna on and most of my eyebrows were still gone at that time. It amazed me how he remembered our conversation because I know that he has spoken and photographed many survivors since then. He wrote in my book that he would never forget me and signed it with love. Bill apparently loved Michelle a great deal. He is now making a great effort to make a difference in helping those with breast cancer and in finding a cure.

Losing My Breast Round Two

I lost my breast a second time in March of 2006. I continued to have on and off pain since my mastectomy back in January of 2006. Driving with my stick shift car was a difficult for me because it required too much movement and exertion on my right chest. A few days before my spring break I was running a fever and my skin near my needle port for my implant itched. I stayed home the next day from work to rest and felt better though my itch was still itching. A day or two later that same spot started turning a red color and it was starting to become tender. It occurred over the weekend and I decided to go in on Monday to get it looked at. By Sunday, I was in miserable pain.

My first mistake is to allow myself to get to this pain. I should have went in earlier, even to the on call doctor over the weekend. Hound your docs. We pay them big bucks and our health is the number one priority! We know our body the best! By the time I went in, the plastic surgeon took one look at it and said I had an infection. He put me on antibiotics for seven days, high dosage. I spent two more days in miserable pain. My red "spot" started to develop into what looked like a big blister. By Wednesday, I went back in to see my doctor because the simple act of wearing clothes and having my clothes rub against my infected spot put tears in my eyes.


I spent my spring "break" in enormous pain both physically, mentally and emotionally. He had me go for an emergency surgery that day to take my implant out. Emergency, I think not. I waited several hours before they finally wheeled me in. RJ was growing considerably short tempered with my plastic surgeon and vented to the nurse.

There was little pain when I woke up. RJ told me that his venting must have helped. The plastic surgeon went in and took out my implant. While he was in there, he scooped out a great deal of the infection. The surgeon spoke to RJ and explained that my infection was pretty severe. I went home that night still feeling very out of it from the anesthesia.

It wasn't until the next day that it sunk in that I lost my breast a second time. I looked down at my chest and my right breast was gone. I had my drain in again and my right breast was gone. It was just gone... I've never considered myself a vain person. I've always enjoyed having a flat chest because I got away without having to wear a sports bra if I forgot it. I never had to worry about people staring at my chest. Sports was fun for me and I never had the extra weight up there. I remember my plastic surgeon telling me during my consultation with him that many women go with a larger size. A larger size was not an interest for me....I only long for the breast that I had. My A cup was perfect for me. I've now become a lopsided A cup.

I didn't think it would bother me that much at first. I put a strong and courageous face on and walked around lopsided for a long time. I occasionally noticed a few people stare at my chest. I noticed that I did not want to wear light tops as much. I started feeling very self cautious at the gym.

As an alternative route I got fitted for my prosthesis and bras with pockets to hold the prosthesis in. I started wearing that around. It made me realize that it was nice to feeling "normal" and that people may be staring at me but not because I was lopsided.

As I blog now, I have tears rolling down my face. It's been over a year and a half now and the emotional pain and scar is still very real. Every morning and evening when I dress and undress is a reminder that I only have one breast.

I will choose another plastic surgeon and will need to see if having that breast reconstructed again is an option. I have so many fears. I fear the knife, being put asleep, the pain from the implant and the possibility that my body will reject it again. There are no guarantees that I will ever have a right breast again.

I notice everyone's breast now. I normally know if they are real or fake. I have become very resentful of those who have had breast enlargement for the sake of having larger breasts. They subject their body to this pain to have a larger breast? It doesn't make sense to me. They should be thankful that they have two healthy breasts!

I am very appreciative that I was not born with an obvious handicap. I admire all the people that live with anything that an "average" person doesn't have. It isn't easy not being "normal" when we live in a world that glorifies plastic surgery and large breasts.

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.