Friday, July 29th - 3rd Chemo

Chemo was hard today.  I normally go in with my head held high and my kick a** attitude, but today I just wasn't feelin' it.  I was dreading what was about to come because I know it meant more consecutive days of nausea and sickness.  The whole thing is getting old, to be honest.  Just when I start to feel semi-normal it's time to go back again and mentally, that is very difficult.  Again, I realize I have no choice in the matter, but that doesn't make it any easier.

Two things DID help me get through it:

1) My dear friend from Southern California, Suzanne, sent me a bright pink Road ID bracelet (the kind I wear when riding the bike) and I wore it to chemo today.  It reads, "Tamara Simbirdi, warrior and survivor, kicking cancer to the curb!"  It also lists two emergency phone numbers (Harun and Elise) in case of an accident.  Woo hoo!  I love this.  I plan to wear it for the duration of my treatment and then it will be handy when I start riding the bike again.  Everytime I looked down at it, it reminded me that I am supported by a huge team of champions and their support means everything to me.

2) I got some wonderful news from a Spin friend of mine, Rich.  Rich's young son-in-law, Jaime, had cancer a few years ago and we used to chat about it.  When I was training for the TNT century ride I rode with Jaime's name on my jersey to remind me of Jaime's struggles as I headed up hills and logged miles on the bike.  He endured a terrible regime of chemotherapy during his treatment and eventually came out on the other side happy and healthy.  Rich sent me a message this morning to let me know that Jaime and his wife just gave birth to a healthy baby boy!  What a blessing!  It is truly amazing that even with the ill-effects of chemotherapy on the body, Jaime was able to move on and create something so beautiful and precious with his wife.  God is good!

These two things really helped me get through today.  Funny, sometimes I'm not sure what will inspire me to move forward but something always seems to pop up and help me along.  Our Carolyn gave me a little poem which I keep next to my bed and it goes like this, "To get through the hardest journey, we need to take only one step at a time...but we must keep stepping."  I think of this mantra a lot, especially when I am having a hard day.

Next up - I have an appointment with the genetic counselor on Monday morning to find out if I carry the BRCA gene.  Stay tuned.  I will post the results.

Thursday, July 29 - Third Chemo Tomorrow

The vacation in Tahoe couldn't last long enough, that's for sure.  It was great and it was very bittersweet to come home.  Mentally, I am having a tough time facing the fact that tomorrow morning they will "knock me down" again with the cancer-killing drugs...I have remained positive this whole time but knowing that the nausea will return again is giving me anxiety!  I hate the fact that just when I start feeling better, it's time to go in for another infusion.  It truly is horrible.  The double mastectomy and subsequent recovery was a walk in the park compared to the chemo.  I would do anything to avoid this, but I realize that is not possible.

I had a blood test done today at DV Oncology to measure my white blood count levels and the doctor said that everything looked good.  My weight hasn't fluctuated at all which surprised me; I thought for sure with all the delicious food I ate in Tahoe that I would have put on at least a pound or two.  Don't get me wrong...I'm not complainin' but I'm just sayin'.

I having been doing my best to get the essential vitamins I need, but honestly when it comes to food, I've been not worrying about carbs or fats or proteins and just going with whatever sounds good.  One day in Tahoe that meant a chocolate milkshake for lunch...yum yum!  I seem to have weird cravings for things and yet weird aversions to other things.  Day by day, my tastebuds change.  Again, I am just listening to my body and giving it whatever sounds good.

A few things (sort of new) that I am experiencing as a result of the chemo are:
1) mouth sores (no fun) and terrible bad breath
2) I can't eat foods that are too hot or too cold; everything needs to be about room temperature because my teeth are really sensitive
3) my scalp is itchy and painful to the touch

OK, so there's all the bad stuff but I did get ONE piece of good news today from the doctor: it is possible that my eyebrows might not fall out!  Or at least they might stay for awhile longer, anyway.  She said that the eyebrows are the slowest growing hair folicles and since they haven't left me yet, they might possibly stay around through August.  After that, I'll be getting a different drug called Taxol and this will most likely wipe out the eyebrows.  I suppose I should appreciate having them for now!

The doctor also told me that this third infusion will probably be my hardest.  She said I will most likely feel the worst following this treatment and my fatigue will probably increase significantly.  I am trying not to think too much about that.  I just need to get through it...so prayers please!

Wednesday, July 20th - Relaxing in Tahoe

Wow, Tahoe sure is beautiful this year.  I am not sure if it is because the lake is so incredibly full, or if it because I am feeling appreciative of the fact that I am here to enjoy it with my family and friends.  Either way, absolutely beautiful.

I was able to make the drive up to the West Shore last Sunday...slowly but surely.  I wasn't feeling my best but needless to say, I made it!  It feels great to be here.  This vacation especially is very laid-back and relaxing.  We always take off our watches while we are here and simply call it "Tahoe time"; meaning it doesn't matter what time it is.  We eat whenever we are hungry, sleep whenever we are tired or party whenever we feel like it!  It's a wonderful thing.

Another great thing is that there is no pressure to do anything special...the kids play outside in the woods and make up their own games.  This is the perfect locale for me to rest and relax and recoup after chemo.  I've been able to go down to the beach a few times and as long as I stay shaded from the sun, it's been very comfortable watching the kids play.  The water here is extremely COLD, but even so, the kids have been swimming from the shore to the pontoon.  Loads of fun.

My parents and sister have been a HUGE help to me; especially since Harun is still back in Clayton working.  They are helping take care of the kids, cooking, cleaning, giving me time to rest, etc.  I am so appreciative.  Harun will arrive this weekend.

I feel like I am starting my "upswing" after chemo...meaning I am starting to come out of the chemo fog and I am feeling stronger and better every day.  The nausea still comes in waves, but for the most part I am eating normally.  I notice I am a little tired up here, but I believe that probably has something to do with the altitude.  My doctor advised me to expect this.  The altitude can trigger anemia, so she instructed me to drink more fluids than usual and take it easy.  All in all, Chemo #2 did go better than #1...so let's keep thinking positive that #3 will be even better!  I have one more week up here in Tahoe before I have to return home for another infusion.

Happy days, everyone!

Saturday, July 16 - Made it Through Chemo #2

Well, the fact that I am awake and moving around the house at 6am gives you some indication of how well it went yesterday at my second chemo infusion.  My girlfriend and support angel, Jody, picked me up yesterday at 8am and we headed over to Diablo Valley Oncology.  In an effort to make it a better experience than last time, I went in with a "kick a**" attitude, wearing my favorite yellow bike jersey (the yellow is color the winner of the Tour de France wears)  and my livestrong bracelet; all a result of feeling inspired by one of my heros, Lance Armstrong.  I recently re-read his book which details his fascinating cancer journey (called "It's Not About the Bike, My Journey Back to Life").  I should have prefaced all this by saying that Harun and I are avid road cyclists and when we are not out riding ourselves we are following the Tour de France or reading cycling magazines or books about riding or racing.  Bike junkies, we are.  Anyhoo, Lance's book is truly amazing or I guess I should say his fight against cancer was truly amazing.  He was diagnosed with late-stage testicular cancer, which had began to move through his body, affecting both his lungs and his brain.  He had two surgeries and months and months of horrific chemo and given a 20% of survival.  20%!!!!  And not only did he beat the odds, he came back to win the Tour de France 7 times!  A truly AMAZING feat.  Alright, enough about the book, but I truly recommend it for anyone who is looking to read something truly inspiring (whether you've been touched by cancer or not).  It was much different for me reading it this time around now that I am facing my own battle.

Chemo #2 was basically the same drill as the first.  My angel nurse, Kaval, hooked me up to all the bags of clear liquids which would eventually drip into my veins over the 90 minutes we are there.  The only drug that looks different is the Adriamyican...it looks like Koolaid, and everytime I tease Kaval that it better not be Koolaid.  I know the Adriamyican has made it through my body because my urine has a slight reddish hue for a day or two following the infusion.  I forced myself to drink a ton of water during the appointment, as well as an Ensure shake which provides protein and calories.  On the way home, Jody treated me to a Jamba Juice and that went down fairly easily, too.  I felt great at home for the first few hours...I even ran out to a prosthesis clinic to pick up a compression sleeve for my right arm.  Whenever you are travelling to high altitudes, the doctor recommend you wear a compression sleeve to aid the circulation in the arm where the lymph nodes were removed.  I often have numbness and soreness there, so the compression sleeve is used to help alleviate this.  Since we are going up to Tahoe next week, the doctor thought it would be a good idea for me to wear one.  It's flesh colored and you can't really see it, so I will probably wear it as much as possible.

I started feeling sick around 6 or 7 pm, but my sister and mom were here and we popped in a movie to help keep my mind off the nausea.  It definitely helped.  I also tried to eat more and sip my juices but I still felt quite queasy and weak.  By the time bedtime rolled around I as ready for my nighttime medications, and voila! I was off to dreamland only to wake feeling much better and refreshed this morning.

I have a few folks in my angel arsenal to thank especially for their help yesterday.  Chemo days are tough so I am most appreciative when friends step up to help me on those difficult days...
Jody - for giving me a ride, and for awesome moral support
Monica - for taking Conrad all day long and tiring him out
Pam - for inviting Carolyn to spend the day again with her buddy Laura
Debbie - for a perfect dinner for me and all my family, it was wonderful
My mom and sister - who provide me with love and support DAILY, but who sit with me and are especially patient with me on chemo days!

And thank you also to all of you who are thinking of me, and praying for me, and sending me cards and wonderful words of faith, hope and love.  I am saving all these cards (in a huge binder!) and I look at them often for inspiration when I am having a bad day.  To close, I wanted to share a few words from a book of daily devotions I was given by our friends Darren and Anita Wardle.  This passage struck me as incredibly relevant, being that I am a little nervous for what is to come today.  This morning I have to go back to Oncology for my "Neulasta" shot...it is given to raise white blood cell counts the day after chemo and it is painful and makes me feel sick and achy.  Needless to say, I am not looking forward to it.  It's almost worse than the day of chemo.

So here's what the passage states and I read it last night:

"Do not worry about tomorrow!  This is not a suggestion, but a command.  I divided time into days and nights, so that you would have manageable portions of life to handle.  My grace is sufficient for you, but its sufficiency is for only one day at a time.  When you worry about the future, you heap day upon day of troubles onto your flimsy frame.  You stagger under this heavy load, which I never intended you to carry.  Throw off this oppressive burden with one quick thrust of thrust. As you thus affirm your faith, shackles of worry fall off instantly.  Enjoy My presence continually by trusting Me at all times."

Sounds good to me.

Monday, July 11th - I REFUSE to let cancer win...

So, honestly, I can't really tell if I am having a stellar day or having a terrible day.  Maybe I am somewhere in between, but I thought it was important to post about how I am feeling because I refuse to let cancer dictate my state of mind or emotions.

This morning dawned and I was feeling great; strong, optimistic and eager to get on my bike.  Waking early to watch the Tour de France with Harun for the last week or so has prompted me to feel even more excited about getting on the bike again.  The problem is this; I have been walking every day since chemo but even so, my fitness has taken a DIVE off the deep end.  Let me repeat; my level of fitness has bottomed out at an all time low and I am extremely out of shape in just the few short months I've been battling cancer.  Chemo has already robbed me of strength and muscle and I'm only 1 treatment down, 15 to go.  Yikes!  I decided to try riding my bike through the neighborhood this morning, excited to be out in the fresh air.  But to my dismay, only a very miminal climb had me gasping for breath...damn cancer!  I was so frustrated.  Just a few months ago (right around the time of my diagnosis), I rode a 100-mile "century" ride with friends in Chico and felt stronger than ever!  Now I can hardly make it around the block without great effort.  Sadly, I came right home and hung the bike in the garage.  Unfortunately I was hoping that riding this morning would restore some of my self-confidence and help me to feel liberated, and instead if was completely humiliating and saddening and just made me feel completely pissed off.

SO, in order to make myself feel better I decided to take matters into my own hands...Cancer may be able to rob me of my fitness right now, but I'm not letting it take charge of everything in my life.  I had Harun shave my head altogether today so I COULD CONTROL when I lose my hair.  Ha!  Take that, Cancer.  You are NOT in control of everything in my life.  It actually feels quite funny and the kids are a little freaked out, but in time, I think we will all adjust to me wearing the wig.  The wig is blond, and a cute cut so I think it will do the job just fine.  At least Harun and I had a good laugh while he was doing the shaving...he made a sort of mohawk at first and we couldn't help but crack up!  I kept having to tell myself that this is the one and only time I will ever be doing this so better to laugh about it than be upset.  HAIR DOES NOT DEFINE ME.  And neither does having Cancer.

Tuesday, July 5th - Genetic Counseling

Well, out of all the news I have had delivered to me in the past few months, today's news is probably the BEST I have heard!  My mom went with me this morning to the hospital to meet with a genetic counselor, named Margo and lucky for me, she had some positive things to say.  About a month ago I sent Margo a fairly detailed family tree with all the medical information I could find about our relatives.  This meant chronicalling all the medical issues associated with both my father's side of the family, as well as my mom's (obviously cancer included, but listing other health issues as well).  Margo took that information and made a cool chart which illustrated all the information I had sent.  In addition, she utilized two computer models which take the information and give a projected likelihood that I carry the genetic marker (BRCA 1 and BRCA 2) for breast cancer.

My cancer surgeon had ordered the genetic counseling test for two very good reasons: 1) I was diagnosed with BC before the age of 45 and; 2) I had an aunt on my father's side who was diagnosed early (age 42) and eventually died of ovarian cancer.  (The genetic marker for breast cancer and the genetic marker for ovarian cancer are very closely linked.)  The surgeon said it would be important to know if we are looking at a possible genetic problem in the family, or if my cancer developed because of some other (unknown) reason.

HERE'S THE GOOD NEWS...based on Margo's two computer models...I ONLY HAVE A 6% or an 11% PERCENT CHANCE OF CARRYING THE GENETIC MARKER!!!!!  This is terrific and just the news I was hoping to hear.  What exactly does it mean?  Essentially, it looks like my developing cancer was just an environmental fluke and most likely has nothing to do with my genetic makeup.  This is great news for my mom, my sister, my kids, and most of all, me.  We DON'T want this crap in my family....no way!

Again, this was all preliminary data and we won't have the true test results until August 1st.  I gave a blood sample today and it will be sent away to a special lab where they will analze my DNA and report back the findings in a detailed report.  I might be jumping ahead of myself since the results are not yet confirmed, but I felt very hopeful based on what I heard today from Margo and am going to move forward believing what she said to be true.

If I DO carry the gene, the game changes a bit.  Most likely my doctor would suggest my having a hysterectomy since the two cancers (BC and ovarian) are so closely linked.  Ovarian cancer is a quiet killer and in many cases, unfortunately you don't know you have it until it's too late.  Thus, the idea would be to remove the ovaries before the cancer would have a chance to develop.  Not a bad deal, given that I'm done utilizing my ovaries (no more kids needed here!!!) and the surgery is laproscopic and not invasive.  After everything I have been through thus far, that sounds like cake!

The larger problem, if I find that I indeed carry the gene, is for the sake of keeping my family safe.  It would mean that each of my kids (even Conrad) would have a 50% chance of developing BC throughout the course of their lifetime.  I don't like even pondering that, but it will be something we will have to face if the test results come back positive.

That being said, I am keeping a POSITIVE attitude :) and hoping for the best.  And based on what Margo said today, it sounds like most likely I DO NOT CARRY THE GENE.  That's my story and I'm sticking to it....

Chemo ROCKS!

OK, so I am totally kidding by posting that, but I do try to keep my blog as positive as possible.  Actually, chemo stinks but I am doing my best to manage its ill-feeling effects.  It has been a little more challenging that I was hoping.

The day after each chemo treatment I receive what is called a "neulasta" shot in the arm.  The neulasta is used to boost my white blood cell count.  I actually felt much worse after the neulasta shot than I did after the chemo infusion!  Not only does the injection inflict the same horrible "flu" like nausea, but along with it comes a strange joint pain or ache.  Strange!  They advised me to take Claritin or Ibuprofen but it didn't do much to help with these side affects.

I am trying to take things day by day.  Today is three days post chemo and I am finally up and about, although still very weak.  I tire very easily and am not yet back to eating my normal foods.  Everything smells weird, looks weird or tastes weird so I am sticking to very basic foods.  The nutritionist told me that while crackers and bread probably sound about the best foods for my stomach, it is even more important that I eat lots of protein.  My sister gave me a bunch of Ensure shakes and they have been going down pretty easily.

I hope that I am on the upswing and will be feeling back to my normal self in the next day or two.  (Only to be knocked down once again by chemo on July 14th!)  Oh well.  :)

July 1st - Proud of Myself! Out walking the morning following chemo!

Yesterday was chemo treatment #1.  All went well and I was fairly pleased with myself on the drive home.  I didn't feel sick at that time, only a little woozy from all the medicines.  Thank God Harun was driving because in my condition I probably would have caused an accident somehow!  Looking back, I did two things incorrectly on my arrival home:

1) I should have had something to EAT since it was lunchtime and I hadn't had anything but cereal at 7 am.  But alas!  I was happy!  I survived my first chemo and it was time to celebrate, wasn't it?

2) I should have taken an anti-nausea pill BEFORE I started feeling badly.

At about 3pm the nausea hit me like a FREIGHT TRAIN and I was in the bathroom for the following three hours.  I never did throw up but felt like I was always on the verge, it was terrible.  I took a pill then, and had some crackers but at that point it was too late.

I felt horrible on and off for the next few hours until it was time to take my nightime meds.  These meds contain "sleepy sauce" so they put me to sleep almost immediately.  I slept fairly well during the night and only woke once to take another pill.

This morning I woke up feeling fairly normal and decided to make it a better day.  The more I can change the perception of how I "should" feel...then the better.  I took my medication along with a piece of toast and then put on my tennis shoes and headed out for a walk.  Fresh air always does me such good and it is as beautiful day outside.  The morning air was nice and cool but it sure does feel like things are heating up.  I put on my most inspirational music on ipod and hit the neighborhood.  I didn't go far, but far enough to feel like I was getting some exercise.

As my doctor told me, this week will be trial-and-error.  I will need to work on finding foods and drinks that soothe my stomach, figure out when it's best to take the medicines, and balance out exercising with rest periods.  That will be my challenge.  I will see her (Dr. Svahn) next Friday to discuss how the week went and see if we need to make any changes to my medications.

This afternoon I have to go back to DV Oncology for my quick "booster" shot.  Evidently this booster shot is a helper in aiding your system to recover from the affects of yesterdays drugs.  I will get this shot after every chemo for these first two months.  Again, this is because they are utilizing the "big guns" in my IV for these first two months.  The following three months when I receive Taxol I won't need the booster shots.

Thanks as always for all the positive MOJO being sent my way...I am keeping all those powerful good vibes in my mindset and that is helping me face the day.  I plan to walk everyday and maybe increase the mileage as I go along.  I also intend to get back on the bike, but I just am not feeling strong enough for that yet.  Will keep you posted.  XO

A few special shouts out to my arsenal of angels, without whom I couldn't do this:
Harun (my rock and right-hand man in all of this)
Elissa (for all her bad jokes which make me laugh)
My Mom and Dad (for helping me relax and spoiling me and my family)
My "little ray of sunshine", Monica
My mother-in-law, Rahile, who has been an incredible help around the house and with cooking
Kimmie, Mickey, Mary and all the CHS Women
Meg (who makes a killer meatloaf, by the way)
ALL of the generous cooks who have provided us with delicious meals!


I love you all and your care, concern and support helps me get through every day!