Day #4 Bouncing back

Thanks to the Ativan I was able to sleep throughout the night. It was prescribed for nausea but I believe it also helped me sleep.

When I got up in the morning I just did not feel like going on a ride, felt really fatigued. Penny stopped by on her bike ride and brought 3 different kinds of fresh delicious breads from the Cuban bakery, we sat on the patio enjoyed them together chatting along. The weather was simply gorgeous. Honestly that felt a lot better than sweating on the bike. Maybe next week I will get on the bike again no need to rush things now. Hey I can even ride during the weekdays !!

Stopped taking the antinausea medication, ate my lunch of salad and lentil soup ( that Nuge - who I declare the soup queen - made ) took a nap, and I was almost good as new !

I was beating myself for not being a good host and not being able to do everything I wanted on Friday evening as Nuge sent me an email that helped me set my priorities right. In a nutshell she told me not to focus on or get distracted by all the obstacles/inconveniences that I will have during my journey to health but focus- direct all my energy on the end result/goal.. getting myself healed completely ! It is so nice that I have wise friends around me, as in my current mental state I sometimes can not think objectively and tend to get stuck on minor details that set me off from my course.

Ferit came from golf and took me to the Home Show at the convention center. house stuff was nice but I just loved the Saturn Sky (it should be against the law to have this car with automatic transmission ! )

Tonight is the season premiere of Desperate Housewives and tomorrow I have an appointment with the Plastic Surgeon who knows maybe he will give the go ahead to increase the PSI in my chest tires ( ehem expanders ! ).

Life is good !

Ride has gotten a bit bumpy

Well since I regard myself strong as a horse I was having high expectations of not having much side effects from chemo ( or was expecting that I would be able to control them). So the first chemo night was a humbling experience, I got quite ill and had to even call the doctor on call at 2 am ( who luckily was my doc ! ) cause I just not could keep anything down and was afraid of dehydrating and not being able to flush all the toxins out of my body. Luckily I had gone into the chemo totally hydrated.

They had not given me the max nausea medication probably because I did not get any morning sickness when I was pregnant and I usually do not have morning sickness either. They prescribed Emend which is supposed to be really good for the next chemo.

The next morning got a lot better even if not back to normal.

I had the bone marrow stimulator shot ( nuelesta) yesterday luckily I did not have the side effects from that one, which was said to be bone pain. I am supposed to get this after each chemo session, that is the requirement to do the dose dense treatment ( every 2 weeks instead of every 3 weeks).

Last night we had the book club meeting which everyone had generously agreed to switch to have at our house but I just could not give myself to the discussions, very weird feeling almost like being drunk.

Later at night felt very jittery and could not sleep at all paced in the house all night, I am not sure why this happened since I was expecting to be fatigued.

It is the 3rd day now and I can not even stand to look at food on tv commercials, basically living on tea, toast, feta cheese and some gatorade but it is getting better I started taking an antinausea medication proactively. Ferit took me out shortly for a change it feels good to go out in short outing. I have lost about 5 pounds in the last 3 days luckily I have some buffer there.

Tomorrow will try to go out on a short bike ride with Penny if I can sleep well tonight.

Finally the second stage has begun

And here is my guy ! Dr. Molthrop.

Phew ! I finally I found an oncologist that I am really comfortable with down to earth, up to date and communicable ( and NO my decision was not affected by his looks lol... although it certainly does not hurt to have such a nice face to walk one through the chemo journey)

Went over the sleuth of questions I had ( Fred called it 'the interrogation' ) with the nurse.

There was one thing that I was not warned about though. That I would have toxic bodily fluids/excretions the next 24-48 hours so I was supposed to flush the toilet twice if I was sharing or if i was in a public restroom. Yikes !!

The disability extension report which the nurse said that they had faxed had NOT been faxed.. well finally Ferit took care of it himself we made sure that we put the dates in specifically as the disability company required. So as of now I am on disability until January 14. I will reevaluate my state once I know how I react to the chemo and might go back earlier.

Went to the back where there were several recliners with a couple ladies with wigs/ no hair. 'Welcome to your new peers' I said to myself.

My 'Tits in Progress' t-shirt got some chuckles, I was told that there was a lady who came to every treatment with some kind of funky stuff and that I should meet her.

Settled into the recliner and was briefed about the toxic concoctions and the possible side effects that I might have during treatment. Although as always said the effects are different for every person. They gave me steroids and a shot of aloxi for the possible nausea it is supposed to be effective for 5 days. I also got a prescription for a nausea medication to be used in case I felt nauseous.

I got a goodie bag with water bottle and books and mouthwash,toothpaste sample ( I am supposed to use special mouthcare to avoid mouth sores)

Was given the 'red devil' first chased by the other toxin. Everything went pretty smooth I did not get the headaches that some people do when the infusion is given. Went online with Ferit's pc and chatted a bit, then the Dr. Molthrop came in and started juggling 3 balls.. saying ' I really do not want to do all the paperwork that is waiting at my desk.. c'mon tell me some jokes' it was too funny. I shared one of the 'you know you have breast cancer' lines.

"You know you have bc when your wardrobe is Pink"

I kept on drinking water and nibbled on the saltines making sure that my stomach did not stay empty.

I did not need all the stuff that I brought in my backpack.. I had packed for a sleepover one would think.

And it was over, I was not feeling anything.

Only a slight discomfort when one has when they are coming down with a cold.

Around 8:00 though a slight nausea/fatigue showed up. hopefully will be able to manage it. Could it be from the watermelon ? Or maybe too much water to flush the poison off my body. I have to learn to work this thing. Sucked on some lemon drops which helped it a bit. Better take the prescription med now.

Oh well chicken noodle soup for me for tonight I guess.

First chemo day .. morning at the gym

I finally was able to graduate to the normal bike from the recumbant bike since i am able to put a bit of pressure on my arms now ( 4 weeks out of surgery)

Did my usual 8 miles but it felt a lot easier in this position. Heart rate crept up to 140 ooppss had set the level to 2. I am kind of getting used to the idea of cycling and catching up on reading. Since I had finished the Kite Runner started reading The Breast Cancer Survivor's Fitness Plan that my dear friend Mary Ann had sent.

Will try to keep the routine of indoor cycling inthe mornings at the gym and walking with the dog in the afternoons and will ask the oncologist today on his take on working out and chemo.

The day before leg # 2of the event =chemo

Activities: ( 2 small workouts)

Morning : 8 mile easy ride on recumbent bike at the gym about 43 minutes. The position on the seat where all the weight is on my butt is killing me ! I have a descent amount of natural cushioning but this is such an uncomfortable position compared to regular road bike.
Heart rate crept to 125 when I increased the rpm to about 85, so backed it off.
RPE ( perceived exertion ) was about 4-5 out of 10. Finished the 'Kite Runner' that we will be discussing in our book club meeting Friday evening.

Evening : Walked with Candy for .75 miles for the first time since surgery. She is NOT comfortable with that halter but she certainly is not applying any pressure whatsoever on it so it is working.

Tried to enjoy my day before tomorrows happy hour where I will be served the 'ultimate chemorita' . From getting picky about whats in the nutrition labels whether they have any hydrogenated oils. or any MSG disguised under a different name .. to walking in willingly to the bar asking me to hit me with the s..t .. life has a sick sense of humor I say.

Went to lunch with J who also combatted this 3 years ago, then visited my friend Penny to give her birthday present.

Started hydrating today as I need to get the chemo drugs out of my system quickly tomorrow.. flush them out to minimize their damage to my good cells.

Feeling close to normal again

Activities:

Monday: recumberant bike at the gym 30 minutes 5 miles at level 1 heart rate around 120's oh boy did I get weak. It felt a bit better after the first 10 minutes but I did feel kind of tired !

Tuesday: Cranking the intensity up a notch rpm up to 75+ 40 minutes on the recumbarant bike around 8 miles still level 1 but heart rate has started coming down to the 110's and I felt a lot better and even considered taking the bike down tomorrow to do a short outdoor ride. ( nahh can't and should not do it I know)

I ordered a Polar F6 heart rate monitor to keep the intensity level of workouts under control.

As they say just as one starts recovering from surgery the chemo truck will hit and you are down again.. sigh ! :o( So I will enjoy wednesday and thursdays gym workouts before I get the infusion Thursday afternoon.

The surgery incision sites healing rate increased this week, the healing seems to come in spurts.. 1 week stagnant the next week fast. Or maybe starting working out and sleeping is helping ? do not know.

After being almost 1 month off from work I finally am able to break the habit of logging on every morning at 8:30 and have started sleeping in. ( ehem I did add xanax to my nightly routine that was only Paxil up to now) I found out that if I do not sleep well I look at the world from a pretty paranoid dark lense, not exactly what I need nowadays.

My fight with getting the disability papers signed by the doctors is still continuing my paycheck stopped as of past monday yikes ! I hope they will do some kind of a cathcup once I can get the paperwork that they need. I was so surprised when the receptionist at the doctors office said ' you really have to be your own advocate there are so many patients that we can not keep track of all' geesh !! I knew that was the case but found it sad that they themselves even admit this.

Yesterday we went to Track Shack to get running shoes for my friend Zeren she will be training to do the Jacksonville Half Marathon in February too ! Then went to Lola's Sandwich shop to eat rich ( definitely sinful) sandwiches with Sibel and Zeren. Pompei's last days I thought to myself, come thursday.. pump the AC in my veins I probably will not be able to down that kind of greasy stuff for a while at least.

Monday was not a good day mentally I was really down.. then I realized that it was simply PMS ( phewww I thought.. for a while I thought I was going into depression or something)

Tuesday after the gym did my chemo sh0pping from a list of items that I will need that I learned from an internet forum:

Different juices - Carnberry, apple, white grape
Gatorade
Jello
Senocot
Imodium
Biotene toothpaste
Systane eye drops ( I have dry eyes already)
Niaxin shampoo and hair treatment
Aveeno lotion with no fragrance
saltines
fruit juice popsicles
lemon drops - someone suggested to suck on them during infusion ?
pepto bismol

I had an appointment with my counselor Katherine who has been helping me deal with this ( I later realized that I was talking a bit too much and maybe not letting her help me.. ) but today is one of those days where I have a severe case of mouth diarrhea. As always she accomodated me.. letting me get it all out of my system without feeling any guilt/responsibility for my words ;o) Sometimes we work on specific issues that I want help with or sometimes we just go with the flow.

Then on my way back I decided to do a short detour and stop at my old coach Dominick's Hells Gym (lol) since I knew that there would be a session going on at that time and Zeren and my sisinlaw could be there. They were not there but it was nice to see Dominick again. I really missed working out there intensely. I wonder when I will be able to work up to that intensity. Starting going to the gym in the mornings even though I am only doing the stationary bike is stirring the obsessive training animal inside me.. I think this is good if I can direct that beast to help with chemo cocktail to fry any C cells.

Got a halter leash for Candy ( we should have named her tugboat ! she pulls so much I sometimes feel like I am monoskiing on the grass) I need to find a contraption so she can not pull since I am not supposed to stress either arm that much for at least 3 more weeks.

Tuesday night the moon was beautiful so I tried to settle in my corner on the patio where I have the 'feast of 5 senses' but had to settle for 4.
1 - Touch - petting Candy
2 - Sight - Moon reflection on the pond
3 - Sound - Delerium's Chimera album
4 - Taste - Asti wine.

Now the 5th was unfortunately missing which was the only sense missing smell - we have gardenia bush and a night blooming jasmine bush none were blooming .. oh well 4 is better than nothing right ?

Colored my hair probably for the last time for a while won't miss that hassle for sure !

Another weekend

Sunday Workout: 30 minutes on recumberent bike at the gym level 1.

I slept in until about 10 on saturday (cause I woke up at 3 am and was not able to go back to sleep until 5) and just dragged around the house until 2, then we headed up to do some shopping with my mom and then Sibel joined us at the mall. At night Fred took me to a cool new restaurant that opened in Hunters Creek Fusion 7

Got myself a custom t-shirt at the mall to wear to my plastic surgeon and chemo sessions.


I got a bit of a funny look from the guy at the custom t-shirt stand as I explained to them what was supposed to be written on the t-shirt. ;o)

Sunday went to the gym for the first time since my surgery. After 3 weeks I am finally allowed to start light activity.

Honestly due to my obsessive character I really was not looking forward to doing 'light' activity I was more inclined to go for a 40 mile bike ride or hit an intense spin class session. I am craving for the post-intense workout feeling where I felt deliciously exhausted.

Ended up doing 30 minutes at Level 1 on the recumberent bike reading a book, first it actually felt hard then my body seemed to remember what it was supposed to do and I was ok. Kept the heart rate <130 barely broke a sweat which is ok I know I need to take it easy and just keep the wheels turning for a while.

I certainly felt refreshed/recharged when we left the gym. I will try to do light cardio everyday.

Later went to a brunch to Pinars house for her daughter Naz's birthday it was a really relaxing nice day with friends with a bit too much food. I have gained about 8 pounds since my diagnosis which I really am not happy about.

Then watched 3+ more episodes of Lost Season 3 we are trying to catchup before the new season starts.

Wow my hair was really heavy !

Off it goes to Locks of Love !

Wow, I think I need to weigh myself the braid must have weighed at least a pound.
But... look what I have got ! ( can you tell that I am playing the camera whore -- pardon the language thats what Elif calls me when I take my own pictures !!)Geesh I should have cut my hair sooner you know ?
Went to Art of Hair with Pinar on her lunch break and Jessica did an awesome job dont you think ? ( her phone is 407 438 5568 in case you want 'the look' ;o) ) We just left it up to her, giving her a guideline ( Valerie Beckham)

Now that really was not so bad..

Now I have an USB

My procedure was not until 2 PM I took a Xanax that I was hoping would knock me out until at least 10 AM thursday morning, and I stuffed myself with food until 12 AM the night before since they wanted me to stop eating/drinking then. (food is extremely important to me and I simply admire the people who say that they forgot to eat anything after breakfast till dinner remembering my mastectomy day and how I was about to climb the walls around 11 AM cause I was hungry I was not looking forward to another tummy grumbling episode !)

After I woke up in the morning put on my eye covers and buried my head under the pillows getting ready to continue sleeping then heard the phone ring, it was the hospital asking me to come asap cause the surgeon was running ahead of schedule. We got to the hospital quickly ( was half asleep luckily my mom was driving) did the paperwork. They were giving out donuts in the waiting room - Now here is something that I have a hard time grasping, I understand that donuts, bread are all comfort foods but c'mon they should not be serving this kind of crap at least at hospitals. It is like ' oh yeah.. lets clog your arteries up with lard and then get boatload of your $$ unclogging your vascular plumbing'

In the meantime I was trying to reach Group#1 oncologist unsuccessfully to let them know that I was not coming for the chemo treatment on Friday. All I was getting was the annoying ' All of our agents are busy, please wait for the next available ... ' I was not even given the option to leave a voice mail. I called the generic oncology scheduling line and canceled my appointment but I still had to talk to the oncologists nurse since I knew that they really had to pull some serious strings to squeeze me in. After at least 20 minutes on the phone and trying 3 different phone numbers I was able to reach a voice mail box from another department transferring my call internally. Stated that I would not be coming in for the appointment on Friday cause I still was not sure on whether I preferred dose dense or conventional chemo and my surgery site had not healed.. and I would call them later to reschedule.

After some amount of wait I got into the pre-op room of Dr. Phillips hospital. The pre-op room was a lot nicer than the other one I had they gave me an insulated gown which was hooked up to a hose blowing in warm air.. that really felt cozy. The nurse taking care of me, Lar was from Sweden and we chatted about Sweden since I had went to Sater for the Triathlon ITU Worlds Long Distance Race in 2004. Dr. Chambers came (she is the surgeon who had also done my mastectomy) and we discussed the action plans for the 3 oncologists which really did not differ that much although she did not outwardly state so I understood that she agreed with my present selection of Oncologist. She took the time to explain the procedure of placing the port on my left side and checked my mastectomy incisions.

( It is funny that the 2 oncologists that I was trying to decide between were featured in October 2006 version of the Doctor Magazine .)

At least 6 people asked me the same questions over and over again ( main nurse, surgery nurse, anaesthesiologist, asst. anaesthesio..., ) my name, dob, what operation I was having. This is good that will make sure that I do not end up having my apendicitis removed.

They had a bit of problem sedating me..injected me with Versed ? Then Lar kept coming back asking ' are you still awake we might need a sledgehammer to knock you out ' I felt more awake than I had walked in the effect of Xanax wearing off. They gave me another dose but that did not make me drowsy either, maked the surgery nurse promise to make sure that I was not awake 'during' surgery ! Finally they gave up trying to knock me out and gave an Entertainment Weekly to keep me busy for a while. Then they wheeled me into the surgery room, boy the corridors of the surgery place were sooo crowded with hi-tech gadgets it looked more like a warehouse. The surgery room was more professional than the one that I had the mastectomy in but could not see the stereo. So I asked where the stereo was.. they put on 'Hotel California' .. thats the last thing I remember. I wish getting sedated would be gradual for me it is more like 'poof' I go out.

Woke up in the post-op room and did not feel drowsy at all they must have done a really good job. We started chatting with the nurse ( forgot his name) who said that they only had to wait for my x-ray to come back that would show that the port was in place and they did not puncture my lung ( WTF !!!! ) which could possibly happen in port placement surgery. I immediately started a self check by breathing in deeply and stated that I would probably be able to tell if I had a hole in my lung .. right ???

Sucked on some ice then we had to wait forever for the radiology department until one of the nurses just walked over there and forced them to give an answer ( the joke was that you do not want a little blond Texan girl on your back :o) )

Finally I was given clear to go ahead.

Got wheeled to another suite where I would be discharged from, picked up my mom from the waiting room. Gobbled down the crackers and juice they gave me and I was out of there feeling perfectly fine even felt that I could drive.

The ports that I had seen on other gals were a lot less invisible than mine, is it the swelling .. or.. maybe I actually do not have any fat in my chest area the port is kind of sticking out. Here is a bit info on ports

Came home and felt a bit discomfort since the thing feels like it is sitting on my bone.. so took 2 tylenols and had a big breakfast, Elif made awesome pancakes for me.. watched Greys Anatomy. The new season is starting at the perfect time although I wanted to kind of catchup with Losts 3rd season which is not released yet from abc.com read a bit and took a nap.

The oncology nurse had left voice mails to the home and my cell phone asking for an explanation on why I was cancelling and that she would not be able to reschedule me for next week since their schedule was really tight. I called back and was able to leave another voicemail confirming that I was aware of their scheduling problems but I would NOT be coming in friday and I would call them later.

Did some online shopping with the help of my resident fashion advisor( that would be Elif my little one - aka version 2.0) from TLC then took a hydrocodone to sleep well and not feel any discomfort from the incision site.

Change of plans..

Met with Group#2 oncologist today and the meeting turned out as I feared. I really liked his approach, the bustling facility and he is doing the dose dense treatment that I had heard good things about. So here we go again ! I can say that I liked him even more than the oncologist that resigned in Group#2 that was highly recommended.

He said that he usually did not do chemo to patients until about 3-4 weeks if they had bilateral mastectomy with expanders like I had, since that is considered major surgery and would like to let the body heal completely. After I mentioned that my sutures were not healing fast thus the Plastic Surgeon was not able to start expansion he said ' well if he is not comfortable expanding I certainly will not give you chemo now' which is a point that I never had thought of.

He pencilled me in for next Thursday September 27 for chemo and appointment, and said that if I wanted to go with the Group#1 I should just call in and cancel.

Sat down with a chai latte at Starbucks with Fred, called sisterinlaw and Nuge to brainstorm ... and we all decided that I really felt a lot more comfortable with Group#2 doctor and the proposed treatment.

Soo.. now the plan is as of 6:32 pm wednesday: ( have to time stamp my decisions cause I am even confusing myself)

Get the port placed in tomorrow with an outpatient surgery which I still be sedated for.( I am still pretty mad at group#1 oncologist for not instructing for the port placement during the 1st surgery even though I had asked for it before the surgery now I need to get sedated one more time needlessly !!!! )

Call Group#1 and tell them to 'postpone' the chemo on friday cause I do not see the sutures healing and would like to see Dr. Pope to get a go ahead for chemo, and I also wanted to look into dose dense chemo.

Now I really am going and starting reading the Kite Runner.. enough is enough !

Squeaky wheel does get the grease or should I say the toxic cocktail?

Well it seems like my fits over the phone yesterday got the facilities attention. I was contacted by the oncologists nurse promptly this morning who made it extremely clear that they had to get 'special' permission from upper management to schedule my chemo to start asap this Friday. Good! now thats more like it I thought ! It will be 3 weeks since my surgery,feel totally ramped back up again and I am ready to roll ( or hit by the chemo truck.. whatever ;o) )

But I still had not received a call from the surgery department to confirm the port placement surgery that we had agreed with the surgeon on the phone yesterday. Had to make another phone call to the office manager which promptly called me back after scheduling the procedure. Tracking my treatment turned out to be a full time job.

So now here is the plan:

Thursday 2 PM outpatient surgery to place the port in.

Friday 12 pm appointment with oncologist where I will be signing the consent forms that will allow them to poison ehem treat me.

Friday 2 pm first chemo session. The first one is supposed to be 3 hours cause they will test my reaction, then the subsequent ones are said to be 1.5 hours long. Good time to read the Kite Runner, we have our book club meeting next friday and I did not even start it yet ! But they asked me to take several antinauseau medications which might make me dose off.

I will be cancelling my appointments with Group #2( the oncologist and the radiation oncologist). I am not superstitious but looking back into the history of trying to go with Group#2 was just interesting.

After first diagnosis, I attempted to secure an appointment with the Group#2 surgeon, the breast care coordinator who was following up with me had to take off for a week for a personal emergency. thus I went with group#1 .

I was still determined to work with group#2, so got an appointment with their oncologist after my surgery.. which retired after my 2nd visit without being able to even start working with her.

Still adamant in Group#2 got an appointment with my second choice in that group.. but just before I saw him I got everything scheduled by Group#1.

Even for a hardheaded person like me all these were too many consequences, so I am staying with Group#1 sometimes it does not turn out to be wise to try to go against the current.

One part of me felt relieved that things are finally moving and I am finally starting the second stage of my event. But one other side of me had the funny feeling telling me to run like hell ! To Alaska or Australia... somewhere far away where the cancer can not follow me.. stupid I know (probably I am going through another 'denial' stage') but the urge was loud and clear for me to hear which I accepted and let go since these feelings are very normal and it is healthy for me to feel and live them and then let them go.

I had to remind myself several times today that starting the chemo should not be a big deal and I should actually be excited about it and get prepared mentally to help the toxins kill any sneaky cancer cells that might have strayed away before the mother ship itself was evacuated with blunt force.

I have been reading a lot ( maybe a bit too much ) and trying to prepare for the possible lifestyle changes that chemo might bring my way so I guess I am as prepared as one can be.

At noon my sisterinlaw treated me again to a wonderful lunch at Fifi's Patisserie.. the nicoise salad was delicious but the peach cobbler was just out of this earth !I am told not to eat salad in restaurants once I start chemo.. so enjoyed this one. The company was excellent had a really good time and she had to remind me that I had to be at my Muga scan at 1:30.. nah I said.. there is no point to rush and I have been in too many doc/lab appointments that I knew that they usually wanted you in half an hour before they actually need you.

The restaurant was chic. There was this lady that I could not help but stare at who I first suspected as going through chemo she had such fake big black hair and pretty heavy makeup on an ashen skin. Nowadays my biggest peeve is to look at people and figure out who has real boobs or fake ones and now who is wearing a wig and if they are . do they have eyelashes eyebrows ? Well luckily I did not go as far as Geralyn Lucas ( author of why I wore lipstick to my mastectomy) and go to a strip bar before my mastectomy.

Made it to the Muga scan at 1:30, the plan is to draw 3 oz of my blood, taint it with radioactive stuff and inject it back to me.. Then a scan machine will scan my hearts activity using gamma ? rays.This procedure will be repeated during my chemo treatment to see how my heart muscle is effected with the chome. Well they took 2, 5 minute shots from right and left, I observed my heart rate which has been slightly higher than usual since the surgery, I am not sure why. I asked to look at the pictures/views taken ( I always like to see what is going on and ask as much questions that I can ask making sure that I am not distracting the medics from their jobs). Then I saw my nice stong heart pumping away and a hole in the middle of it ??? WHATTT IS THAT HOLE ? I said, they go : hmm.. we do not know but it is not in your heart for sure. So they searched me for any metal objects, they wiped the lense of the big disk that was hovering over me doing the reading. Took the shots again.. nahh.. the black hole was still there kind of snickering at us from the monitor saying ' ok lets see who is going to figure out what I am ?'

So they decided to move me to another room to another machine thinking clearly that there is a problem with the machine.. then I went ' wait a sec ! I know that is !! It ismy expanders valve !!!' they go 'huh.. what is an expander' . So I explained that I had temporary whoopie cushions under my chest muscles which would gradually be inflated into DD ( nah not happening ! ) and they would be detecting the place to inflate them with a detector and the holes were actually the sections of the expanders from which they would be inflated from. But the techs did not listen to me and took another view from that machine. Then they went to the radiation doc with both views who apparently went ' ah.. expanders' well duhhh !!

Just as I was leaving the center I received a call from Meral, the personal trainer who is also a survivor that I had been talking to after my diagnosis. I had called her earlier today to let her know that I had not disappeared from the face of earth and was planning to work with her as soon as I can figure out how this chemo will affect me. She really took the time to talk with me ( as she did last time) and kindly explained that even if my body was strong as an ox ( which I thought it was ) chemo affected people differently and I should just go ahead and listen to my body but should definitely do some light cardio. She gave another advice which I found quite funny since I had not told her that I was almost drilling holes on my laptops ' G O O G L E' keys lol... ' And do not read too much , stop reading leave your treatment up to your docs and you listen and take care of your body' She has had all of her lymph nodes removed and has been able to workout without lymphedema,. I definitely want to start working out with her as soon as things settle down she is the best person who would be able to help ramp back up again and keep me in a decent state during chemo. It is so cool that I was able to hook up with her, I owe this connection to Tosha ! ( from the bobbies)

I emailed the aerobics coordinator at the gym where I was teaching indoor cycling and told her that in 2 weeks I would be able to help out subbing for the aqua aerobics class when they need a sub for it. Figured I should have energy to at least do that !

After doing my usual downtown tom tom dance ( due to numerous detours to 408 went in circles) I was able to exit downtown and go to Imperial Wigs where I met with Nuge and Zeren for wig shopping. We decided on 2 wigs, one that resembles my present hair, the other was similar to Julia Roberts wig in pretty woman, like a darker strawberry blonde.. thats my kinky one. Then !!! my friend Zeren who never ceases to suprise me dragged a box to her living room and took out several really cute hats with hairpieces ! Boy my head wardrobe is definitely surpassing my wardrobe will have a tough time pulling off wearing all these cool contraptions.

Which brings me to the next question. When to cut the hair off really short and donate to Locks of Love. Maybe wednesday maybe friday... or should I hold on a bit more to my long hair ? I have not had short hair since at least 7-8 years ago will be a refreshing but weird feeling for sure.

Monday, busy as usual maybe a light at the end of the tunnel that I will finally start my treatment ?

After dragging myself out of bed at 8:30 all drugged up from the Tylenol PM's that I took at night started my 'harassing' phone calls to every possible department to get the attention of the surgeon and/or the oncologist so I could get a phone call from either of them. I really think they dropped the ball and am not sure that anyone is taking responsibility/action for my treatment, this is a really bad feeling.

Went to the center in person and whispered to the receptionist:

'Listen I am really pissed off I am not getting the promised calls I do not know what my next action plan is and I am really frustrated'



She got the message and gave me a 'special' phone number. The number of of 'special/secret' phone numbers that I have is directly correlated to the number of bitch fits I have had to have to get things going.



Congratulated myself for not yelling them outloud disturbing the others who were waiting to see the doctors. I hate when people do that and create a scene, although I definitely felt the sweet temtation to throw a 'terrible two'



Went to plastic surgeon he wants to wait 2 more weeks before starting inflation, since there is still some dead skin cells at the suture site he does not want to add additional stress by inflating. I was told that this usually happens to smokers and exsmokers ( guilty here - but had quit 12-13 years ago thought I had repaired the damage, obviously not) and people with circulatory problem. Anyways not too worried about this at this point.
I am still not allowed to swim, was hoping to start Aqua Aerobics to loosen up the body.


Then went to Nuge and made a couple of calls. As I tried to reach my surgeon I was told that she had left for the day.. then I just lost it and got ugly then requested to talk to the office manager who immediately assured me that she was on top of my case and would get surgeon to call me. Now this is more like it. But why do I need to push arent they supposed to be on top of things ?

We went to the wig store in Dr. Philips with Nuge and spent quite a long time trying on wigs. I found a really cute one but it is human hair, the price is crazy and it requires maintenance. Still have not made up my mind, placed one synthetic 1 real hair wig on hold until Friday.

Finally received a call from the surgeon basically this is what she said. They had agreed on the following action plan for me ( it is not up to me as I thought ) Somehow they dropped the ball on who was supposed to call me last week.

No additional surgery, only radiation after chemotherapy. If the radiologist had stated that no rads were needed after additional lymph node removal ( if the result was negative) then they were going to go ahead with surgery, but as of now surgery is out of the question since the radiologist felt that I needed rads in any case. Additional lymph node removal was going to be mainly for staging purposes and the outcome would not be impacting the treatment options, so why mess further with the nodes.

Although this gave me a sense of relief the majority of responses that I had received from ( 2 oncologists, 1 cancer research specialist ) all stated that they would rather have additional lymph nodes removed. Only 1 surgeon had stated the reasoning that my current group said no more surgery.

My gut feel is 'keep your nodes' get nuked !

Tomorrow is my Muga Scan which is supposed to check whether I have any preexisting heart condition. A standard test prior to getting chemo.

I am feeling extra hyper ( my normal state is already hyper) and can not sit down and relax with a good book, seems like a waste of time and always have the urge to keep moving.. hmm.. I do not like how this is going, need to slow down a bit.

Weekend: Can anyone please give my Chemo cocktail ? PUHHLEEAASSEEEE ???

Ok I know this is going to sound weird, but I am looking forward to blasting the cancer cells with toxic stuff ( .. that will also attack my other innocent fast growing cells- like my hair- but they will bounce back plus the wigs that I checked out look sooo much better than my own hair).



The meeting with the radiologist was good however I was still left with the feeling that I had to choose between:



1 - Get another surgery remove remaining lymph nodes, if more + get radiation if - no rads.

2 - Do not get another surgery get the radiation.



I will get chemo in either way.



But I had never received the 'promised' phone call from the surgeon and was not able to get the dictation about the surgery despite the numerous phone calls made, voice mails left to several people at the facility. How am I supposed to make a decision without knowing wtf they did ???



I had several questions like :



- why were 6 nodes removed ? were they all sentinel ( guardian ) nodes ?

- which levels of lymph nodes were removed ?

- as a surgeon did she suggest additional surgery ?

.

.

.



The whole weekend I was bouncing between web sites, trying to find some trials done for patients with my prognosis emailing friends/ acquaintencas (acquaintances of anquaintances !!) and was getting different responses such as:



- oh keep the lymph nodes the rads will fry any cancer cells anyways, it does not make any sense to remove lymph nodes for staging purposes.



- hmm.. if I were you I would get the lymph nodes removed rads is no walk in the park. avoid it at all costs.



I definitely do not want to sacrifice more lymph nodes and risk lymphedema I already have a constant burning/sore sensation in my right shoulder and back of my arm due to the removal of the 6. Rads will also fry the lymph nodes but they might have a chance to recover(thats my theory).. its not like they are being scooped out and trashed like they would be in surgery.


Saturday morning went to Farmers Market in Winter Park with my mom and Sibel who came for the weekend from UF. ( yey !! ) gave her grief !@about the medical people( she is planning to be a surgeon)Went to Track Shack and got really slick running shoes for Sibel ( geesh this is what a mom is I never paid that much for a running shoe Brooks Trance 7) Went to TooJays for lunch then did a short Marshalls and Ross excursion, was not very fruitful.. not exactly in shopping mood.



Later the same day out of the blue I basically blew a fuse and went MIA for 7 hours. I think I kind of freaked out everyone but that's the way I handle myself. I disappear, recharge and reappear it works for me. When I came back I had a clearer mind and definitely more self control. I think this replaced my long bike rides where I sometimes was by myself for 6-7 hours out there.

If I had stayed at home I might have gone postal on everyone. When I came home Fred took me to the movies .'The Brave One' first I could not focus but then got into it it was a nice movie.



Sunday was nice we went to breakfast as a family to Cracker Barrel I had my favorite breakfast. 2 poached eggs with toast, pecan pancakes.. yumm.... then we checked out some patio furniture I found one that was 'ok' for the price then when I looked closer I realized that the price was only for the cushions !! yikes... well I just have to keep on looking I really would like to have a sofa on the porch the weather is getting to be very pleasant. Chilled on the couch and watched couple of more episodes of 'Lost' I need to catch up before season starts.



It was another sleepless night, why isn't paxil working ? I think I might need something stronger to stop the dabbling of my mind trying to figure out what to do next. But I think this is because of the uncertainty of the next step.. See thats why I do not want to get any results on a Friday that I might need to make decisions about. Can not follow up with anything on the weekend.



Took 2 Tylenol PMs at 3 am after watching 2 more Lost episodes that did the trick.

Meeting with Group#1 Radiologist

Well this was the best doc appointment that we have ever been to. ( Fred and I both agreed on this). Either we are getting really good at working with doctors or he had excellent patient manners, I think both.

This was the first time that we were meeting one of the doctors after they had reviewed my case together (from the surgeon, oncologist , radiation oncologist team)

I was all ready and armed with at least 15 questions that I have come up with after talking to several professionals (through personal channels) ,being on internet forums, chat rooms and reading researches , test studies. And before I even had a chance to ask them he already addressed 13! (the last 2 were kind of anal even by my standards ) He went through everything thoroughly .. even the surgery findings.

There was some cancer activity in the lymphatic, vascular part of the breast so that aspect is another concern.
If gone by the text book one would need to have at least 7 nodes to stage correctly ( I had 6 removed) so going by that principle I would need additional surgery to take out the other lymph nodes ( YIKES !! do not want that I already have a slight risk for lymphedema )
However if they take more lymph nodes out and they turn out positive for cancer I will need radiation after chemo.

If they do not turn out positive I still will benefit from radiation however not as much.

According to statistics I have a 18% chance of local recurrence without radiation, however this percentage drops to 6% if I get radiation.

But getting radiation in the long term only increases the long term survival by 2%.

The radiation oncologist stated that he will be targeting pretty much all the right side from the end of the ribs to collarbone.

The clear margin of .3 cm is sufficient, anything above .2 cm is acceptable.

Group#2 oncologist had stated that the long term prognosis for recurrence would be about 19% after surgery,chemo and hormone therapy.. so by rads I will be decreasing this to 17%.

As the radiologist nicely put it '2% seems insignificant unless you are in the 2% yourself'

There is also some possibility of complications with the reconstruction which would be addressed if it arises. There is nothing that can be done at this point. And I will not be allowed to exchange the expanders for the silicone implants for about 1 year ( 5-6 months after rad).. hmm...

And radiation also could lead to lymphedema.. joy !

It might lead to scar tissue on the lung that is on that side however it does not impact the functioning of the lung ( he said I could even run a marathon).

I am not allowed to be a Dolly Parton ( SorryFred) as the expander being too large interferes with the radiation.

Brought up that according to the online algorithm from the National Cancer Institude I should only need surgery and chemo.

I asked him whether I was in the grey area, he answered strongly ' Very much'. So it seems like there is a lot of input that I could have in my treatment which I kind of like. For some people that seems scary but I like having a say on my life ;o) Gives me a sense of control which is lacking big time nowadays !

So as of now I am not favoring additional surgery and am inclined towards rads ( although I have about 6 months to think about it during chemo who knows maybe I can find a way to ditch rads in the meantime )

Proceeding with the plan, getting the muga scan for heart(chemo), starting pumping up the boobs, and probably getting the port put in for the chemo and meeting with Group#2 oncologist to see what they have to say.

Couple of things I learned

- dose dense chemo might not be necessarily beneficial for Breast Cancer chemo
- if it turns out that I have lot more lymph involvement after additional surgery I might be staged 3a, however the treatment protocola for 2b and 3a are similar so whats the point ?


Now I shall enjoy my weekend !

No Comment

Went to American Cancer Society today and grabbed this wig.

My new wig model: Sawyer ( from Lost) -lets see whether you can recognize him ;o)

Medical update: it is so confusing that I can not even explain and do not want to relive the sleuth of phone calls I had to make by writing about it. Had to have a bitch fit over the phone today to get things going. The ball was dropped BIG TIME!!! But I have a radiologist appointment tomorrow at Group#1

Next week:

Monday: Plastic surgeon, maybe he will start blowing me up.

Tuesday : Muga scan , some kind of imaging diagnostic that is going to check whether I have a preexisting heart condition - standard test before chemo.

Wednesday: Appointment with Group 2 oncologist, I am really hoping that this guy will get the ball rolling

Friday: Self referred appointment with Group 2 radiology oncologist.

Wednesday: Still waiting for call, messing with wigs, etc

Well although I spent the afternoon glued to my phone I did not receive the call from the surgeon. The surgeon, oncologist and radiologist were supposed to discuss my case wednesday morning and give me a call regarding an action plan later during the day. Either they forgot or they are baffled as I am.

But I am not rushing with this group since I actually want to go with the other group. I still do not have my port in I hope there is no waiting period between putting the port in and chemo. Oh and I also have to worry whether I will have another operation to remove more lymph nodes that is a really tough decision I really do not have a gut feel for that and am receiving conflicting suggestions. hmm... and another operation means delaying the chemo for another 2 weeks until the body recovers. I have been lately wondering whether I am being tested for my patience and judgment calls, decision making skills. I am pretty good at all but it is getting kind of tiring and I can not wait until a solid action plan is laid out and I can just cruise and not think all the time.

Tried to see whether any other centers other than MD Anderson had remote case management. Mayo does not. Sent out a couple of more emails to friends that I have in medical field asking what they were thinking about this all.

My upper body mobility is increasing very quickly I almost have full range of motion back. ( I would say about 70% is back) Driving is comfortable.
Since the drains have been taken out the fluid is accumulating under my arms giving 2 little pudgy spots under my arms, the ps had stated that this was normal and the body should be able to absorb it.

Went out to lunch with a couple of my friends and then stopped by a wig store since I was advised to get a wig before starting chemo. I actually had a very good time and was surprised how good the wigs looked. (hate to admit but a lot better than my own hair)

These are the pictures of the ones that I liked. Both are human hair which requires maintenance but are very comfortable. The synthetic ones are not very comfortable but require a lot less maintenance. ( the highlighted one got the most votes at home but the other one actually looked better than in the photo)

Getting conflicting information from insurance regarding wig coverage, will decide on what to get after I see how much my .ss is covered ( we are really talking serious $$ here.. you are not going to believe it but they are about 700-800$ each ! ) Tomorrow will check some other wig stores.

We were talking with Medi the other day about my hair and she had suggested that I donate it to www.locksoflove.com a public non-profit organization that provides hairpieces to financially disadvantaged children under age 18 suffering from long-term medical hair loss from any diagnosis. The wig specialist said that I had to have at least 10 inches at the longest part of my hair a criteria that I definitely meet. Just before chemo starts I will go ahead and cut it really short and will send the hair in. I am really excited about this !

Got an email from fuel belt who is stated they were VERY interested in developing a product for breast cancer patients that will carry their drains, will need to see what the best path is to pursue that I think that the fuel belt is a definite 'must' for people having 4 drains. With 2 drains I was able to stick them in my pockets and move around but 4 was pretty cumbersome to deal with.

Dropped Paxil to every other day it kind of made me drowsy all day although I was on the minimum dose.. or maybe I should take 1/2 dose daily. Will have to experiment with that.

Wednesday was Roshashanah and had the family over for dinner my mother did almost all the cooking. And sisterinlaw brought the infamous decadent chocolate cake yummmm !!!! I did sneak in 1/2 glass of red wine shouldnt hurt.

Found some medical articles going over radiation post mastectomy

This is a bit too techie, and I probably should not be doing a 'deep-dive' but thats just me I have to dig into stuff to make an informed decision since I am trying to get a feel for the following:

- is it good to get another surgery to remove more lymph nodes ?
- is dose-dense chemo more effective in the long term ?
- pros and cons of radiation after chemo in cases like mine.



I received the following information from a forum that I had posted to regarding getting radiation after mastectomy for those who were node positive ( I had 2 out of 6 lymph nodes removed at the sentinel node biopsy test positive)


A. Here are 3 classic, often cited papers on post mastectomy radiation therapy (PMRT):

1. Overgaard M, Hansen PS, Overgaard J, et al: Postoperative radiotherapy in high-risk premenopausal women with breast cancer who receive adjuvant chemotherapy. N Engl J Med 337: 949-955, 1997[Abstract/Free Full Text]


2. Ragaz J, Jackson SM, Le N, et al: Adjuvant radiotherapy and chemotherapy in node-positive premenopausal women with breast cancer. N Engl J Med 337: 956-962, 1997[Abstract/Free Full Text]

3. Whelan TJ, Julian J, Wright J, et al: Does locoregional radiation therapy improve survival in breast cancer? A meta-analysis. J Clin Oncol 18: 1220-1229, 2000[Abstract/Free Full Text]

B. Here is an excellent 2005 Review of the Literature on PMRT: REVIEW ARTICLE: The Use of Radiotherapy After Mastectomy: A Review of the Literature Lori J. Pierce http://jco.ascopubs.org/cgi/content/full/23/8/1706


C. Here is the 2001 ASCO (American Society of Clinical Oncology) Position Paper on PMRT with current citations (a very long article to read but recent (2004-07) citations at the end of the paper may act to further reinforce the 2001 written guidelines):

ASCO SPECIAL ARTICLES Postmastectomy Radiotherapy: Clinical Practice Guidelines of the American Society of Clinical Oncology* http://jco.ascopubs.org/cgi/content/full/19/5/1539


PLEASE NOTE: the understanding and consideration of Post Mastectomy Radiation Therapy merits in-depth discussions with your oncologist, surgeon and radiation oncologist(s) as breast cancer biology, risk and prognosis prediction (genes and proteins), and treatment (chemotherapy and hormone therapy) has rapidly evolved over the last decade and continues to do so. Please push yourself to fully understand the risks to radiation as well as the possible benefits. This information is on post mastectomy radiation therapy, and does not apply to lumpectomy surgery where the benefit of radiation to reduce recurrence has clearly been shown, and hence allows lumpectomy and radiation to equal mastectomy in overall survival.

What I personally deducted from this information ( have just browsed through it ) was summarized in this paragraph from one of the articles:

The Panel found that the weight of the evidence from randomized trials was sufficient to recommend the routine use of PMRT for patients with four or more positive axillary lymph nodes. It is much less certain that the benefits of PMRT are sufficient to justify its use in most patients with T1/2 tumors with one to three positive nodes. The available evidence is insufficient to make recommendations for this subgroup. Further randomized trials (such as a recently opened intergroup trial in North America) are justifiable for this subgroup of patients. There are few data from randomized trials for patients with T3 or locally advanced (stage III) operable cancers, but the evidence from retrospective studies is sufficient for the Panel to suggest that PMRT be routinely used for such patients. While the consensus of the Panel was to suggest the use of PMRT for most patients treated with neoadjuvant systemic therapy, the Panel could not find sufficient evidence to determine whether all patients should be irradiated after neoadjuvant systemic therapy.


Maybe thats why the 1st group is trying to figure out my #node involved by going in and removing more nodes... hmm....

Random stuff besides medical issues.

Well I just have to balance my life cause the medical stuff is definitely trying to take over and I just DO NOT LIKE THAT and will not let that happen.

Since I started back on Paxil from the 3rd day my sleep has improved dramatically, hate to do this but I guess I have to stay on that crap. Hearing all the meds that I will be taking I really think this is the revenge from the' Pharmacautical Gods' for not even taking a tylenol when I had a headache before my diagnosis.

Monday Fred took me to 'The Olive' restaurant between appointments and treated me to an awesome peanut chocolate pie.. very cute place.

That night I went to the 'Breast Friends support group' in my neighborhood, there were about 11 gals- 9 which were survivors. I am learning that once you are diagnosed and messed up with ( surgery .. or chemo whatever ) you are called a 'survivor'. I guess that basically means that you survived the initial shock of learning you have breast cancer. Some of the gals had passed the important milestones clean and clear ( 5 years.. or more ) some were currently still figthing the bc which was trying to get a strong foot on their bodies. One had an awesome wig which I never would have suspected to be a wig. I should go wig shopping since the chemo cocktails ! prescribed seem to guarantee hair loss. The oncologist already gave the prescription for it anyways.

I was shown how a port looks like ( one of them had one) and some other showed the little scar that it left when it was taken out. So they sold me on it, I was kind of hesitant to have a USP built in my chest but now it makes sense.

My mother said one of her friends who was treated in UK was given a contraption which basically was an ice pack shaped as a motorcyle helmet.. covering all hairline. She wore it during chemo and a couple of hours afterwards and did not lose her hair.. hmm... don't think I will lose anything by looking into it. Oh boy.. if I walk in that chemo ward with a helmet they might give me private room.. thinking of what other bad ideas I might have on others hehe..

At the PS office saw a picture of Victoria Beckham and said ' Aha ! thats a hair do which I could never maintain with my fine/limp frizzy hair but I would love to have. Now is the chance to get it in a wig'

I will not get it blond.. but brunette and probably would get the back slightly longer have to see.
Hmm maybe will cut my hair to make the transition easier I am kind of getting sick of it being this long.

This is the flowers that Keri, Julie, Lisa B brought, check out the vase .. it is a bobbies sports bottle. Appears that I was one of the first to pay membership dues and I got the water bottle yey !

Tuesday after my second oncologist appointment I had a really splitting headache probably due to information overload frying my brain circuits. Afterwards my sisinlaw and her hubby took me and my mom to a nice restaurant called '310' at noon.

Medical stuff: It indeed is a rollercoaster ride

I am so glad that I was recharged that well on the weekend cause surely I cashed out majority of all the good vibes.

Very busy 2 days, the 2 oncologists might have different action plans, a fallout which I was really hoping to avoid ( since that means that I probably will need to get other opinions).

They have not provided me with a concise action plan but here is what I understand what they will be suggesting:

Group 1:
Possibly more surgery to remove more lymph nodes to see whether they are impacted or not.
6 months chemo
Depending on the additional lymph node surgery maybe radiation.

Group 2:
4 months dose - dense chemo ( a bit harder on the body in the short term)
Maybe rads.
( oh and they are trying to put me on a trial med but have no intention to be a guinea pig thank you )

I personally prefer group2 but of course will need to take the maximum action to iradicate this beast now. The chemo prescription given by 2 groups are the same, group 2 does the dose dense whereas group 1 does regular.

The nurse told me that lymphedema which I really was trying to avoid could happen even if one lymph node is compromised, I thought that if you did not have all removed the others would actually compensate for the missing ones hmmm.... need more education on this.

Tomorrow I will get the concise action plan suggested by group 1 after the oncologist, surgeon and radiologist meet.

Unfortunately group #2 which was initially Dr. Moroose's take on it, will have a 1 week gap until I meet with Dr. Molthrop who I will be seeing instead of Dr. Moroose.

the 1st groups visit was overwhelming today:

First the nurse came in took vital stats.
Secondly a MD which seems to be interning with the oncologist came talked a bit, did the remaining usual checks(listening to heart beat, breathing .. )
Thirdly the Oncologist came in with the intern and went over the whole treatment plan.
Then the Oncologists nurse came in with prespriptions and instructions on how to take the meds that I should be on while doing chemo

In the meantime I have been scheduled for a Muga Scan next tuesday which is a routine test for chemo patients that checks whether there are any existing heart anomalies.

My Plastic surgeon will not be able to start expanding yet, because the surgery site has not been healing as much as he hoped (had a bit of tissue death due to inadequate blood supply to an area) so he wants to give a short break. So much for hopes of DD I guess ;o) All drains are out wohooo.. can wear tshirts now.

Beautiful weekend-recharged for the week !

Saturday I was kind of tired ( insomnia has a unique way of running one down slowly) and did my first non-medical !! outing to a bbq at one of Fred's tennis friends house. It went pretty well I basically sat and did not get up from the couch for about an hour except to pet the beautiful puppy they had. I figured that this would not disrupt doctors orders of total rest since I was doing the same thing I would do at home.

I could not help but walk over to my new neighbor 2 houses down which I was highly suspecting to be a roadie. And I was right !!! She is a road biker and was also doing the Race for the Cure 5k tomorrow morning. I am so bummed that such a person moved in my neighborhood as I am down from riding. Introduced myself and invited to join us tomorrow morning around 9ish, when a couple of my riding buddies from Bobbies would be visiting. Hopefully I did not sound like I was stalking her. ( although I actually WAS stalking her.. in a good way)

Sibel came home for the weekend ( Yey !!! )and brought a Gator Mom T-shirt. She bought a Small size but might ask her to exchange it cause I do not have a clue what my size will be after my boobs will be inflated!

The night was pretty frustrating after an intense wrestling session with my 3 pillows and the comforter I got up and I went back to bed around 4 am and got up at 8 am ( went through all the Lost dvd's I had on hand, went on some bc chat rooms,read a bit ). Second day of Paxil but it does not seem to kick in yet. I was even close to getting into my car and driving around listening to my music blasting, I missed that soo much !!! But thought that Fred would freak if I went mia at 3 am and I am not supposed to be driving before next friday anyways.

Sunday was a really exciting day as some of my buddies from the Bobbies were riding this way of town ( I live kind of far away from everyone ;o( ) to stop over and visit. And 3 of my friends were going to run the Race for the Cure 5k at Disney with Fred. Friday Carol had worked diligently on a map to get down here via a safe route.

Tied a balloon to TG ( thats my tri-mobils nick name for Trigeek licence plate) for them to spot the house, arranged the little buffet with the help of my mom - well actually she did everything -- ( freshly baked brownies, bananas, cliff bars, Gatorade,bagels&cream cheese, cold watermelon,coffee) and as I was getting ready to camp in the garage with my coffee to greet them heard the banging on the garage door. phew !! I of course underestimated their speed they were already here !

And there was Grits(Carol), Twig ( Kim),Dr. Chow (Chris), ! It was such a treat to see them after so many weeks of isolation. Well I am not exactly in isolation but every day that I am away from my activities/workout buddies I feel isolated like a fish out of water.

We had a great time chatting along and chomping food, and in a while Fred, Medi, Pinar,Mine showed up all looking pink and green ( bandannas and tshirts)returning from the Susan Komen's 5k race for the cure. Min brought her infamous choc/vanilla almond pudding yummm.....

In the afternoon Lisa Bl, Keri and Julie stopped by we had a great time chatting along.( I was having too much good time.. so forgot to take a picture of us !! bummer ) I just have to share a conversation that took place. To give a background my mother has always thought that road biking is dangerous and I should not be doing it.

Keri : When I broke my femur I was not able to get out of bed for several days.

My mom : Oh ! How did you break your femur ? -- sounding too enthusiastic --hoping to get the answer 'biking' so she can give me 'The Look' - that Lance gave Ulrich ;o)

Keri : Oh it was a skydiving accident !

Priceless moment seeing the look on my moms face hehe....

Nuge and Yasmin stopped by, Yasmin brought the letter that was supposed to be on the tree, she has a precious message from her heart to me on it!!! Nuge brought me the 'Kite Runner' which we have switched to in our book club this month.

I am fully recharged to face this very important week where I will be meeting with oncologists from FL Hospital and MD Anderson. However I am doing some reading and the more I read the more I am questioning traditional treatments which have so many side affects. I have known my body to be very strong, and I do not think I know enough to make educated decision on treatment options. Oh boy, lots of homework needs to be done !

My chest / shoulders are recovering really fast I am almost back to full range of motion ( pretty close to full range) although I know I have to take it easy. The chest muscles are contracting.. trying to get back into function.. and I am having some soreness on my waist.. things are settling down finally.

Cant sleep: confirmation number 26505012-090807014821

Tried to go to bed at 2 am but was wide awake at 4, after dabbling around despite the Tylenol PM.. dropping the a/c thermometer, trying sleep on the couch. Then my eyes got caught in the Runners World magazine that had come 2- 3 days ago which I have not read yet. Fred had asked me pointing to the gal who was running featured on the cover ' Doesnt seeing her make you mad since you are not able to move now ?' I thought for a second and replied ' Nopes.. since I will be running as soon as my 6 weeks of recovery from mysurgery is over...plus I am more of a biker and it hurts to run "

Anyways started leafing through the pages and came to page 31 of the October issue and thought I recognized the strong gal featured. It was Wendy Chioji Orlando's news anchor who had also battled BC couple of years ago. She is a member of the bobbies cycling group but we had never met before. Of course I devoured the article and the following articles about runners who have battled with b/c.

I was planning to run the half marathon of National Marathon to benefit Breast Cancer (“The only U.S. marathon dedicated solely to raising funds to end breast cancer.” )weekend of February 17-18 (. and in the article it was mentioned that Wendy would also be running it. We had talked with M about doing it, and my dear friend Mary Ann was also going to do it.

Of course you know what happened next.

Your registration has been successful!
Thank you
You will receive an email confirmation of your registration.
Your confirmation number is: 26505012-090807014821

I never ever have a time where I do not have a race that I am registered for, I make a point to have a training goal at all times.

Luckily my credit card was in the kitchen, although I am highly suspecting that after reading the blog Fred will make sure it stays secure in the bedroom during the nights ;o) Now i have to reserve a nice oceanfront hotel room to fulfill my fantasy of burying my boobs in the sand to lay facedown..

Ok NOW I feel good to go to sleep ( it is 5:00 AM )

Oncologist dilemma- this time not stemming from me.

Received a letter in the mail today from Cancer Institute of FL :

'It is with bittersweet emotions and much soul-searching that I have decided to resign from the Cancer Institute of Florida as of October 2007. A career opportunity has come about that will not only allow me to impact medicine but will create time for me to become a more involved member of my family'

Signed: Rebecca Moroose ( the oncologist that I really liked )

So now I have to start all over in assessing(ehmm more like obsessing)/trying to find an oncologist that I am comfortable with ! I still have an appointment with her on Monday am hoping that she will be able to provide a direction.

Things happen for a reason but I felt so comfortable with her that I find it hard to believe that working with her was not the right action plan. A detour is in order.

On a side note MD. Anderson- Texas has a Case Management service where they provide second opinions consultations I received the paperwork for it. Will also check whether the cancer patients mecca ' Sloan - Kettering' has a similar service and will work with one of those centers along with a main oncologist locally. ( which at this point I am not sure who ! )

It has been exactly 1 week since I had my surgery although it feels like a lot more time has passed. I have done absolutely nothing other than watching 1st season of Lost and very little reading. I feel like a record played at 16 rpm which was supposed to be played at 78.. grrr... Someone stuck a bar between my spokes as I was merrily whizzing down the path of life bringing my life to a screeching halt as I catapaulted over my bike !

As of my surgery recovery, my good physical state is biting me back. Since I do not feel much physical fatigue I am having a hard time laying down and letting the surgery site heal. Today 2 of the drains ( there were 4 ) came out.. hopefully the others will be producing less stuff so I can get those out too on Monday. No fatigue means no sleep for me.. tried to even knock myself out with Ambien or Percosed.. nah ! my body just wants to move. Might go back on regular use of Paxil that seemed to have helped my sleep. Not being able to sleep facedown or side does not help either I never slept on my back before all this.

If I do not sleep my lense from which I am interpreting life darkens and I get gloomy, if I get gloomy I get agitated, which in turn prevents me from sleeping.. Have to stop this vicious cycle, sleep aids give me headaches and do not make me feel rested.

Once the stitches heal and I am ungrounded I am planning a beach trip and will take looongggg naps on the sand digging holes for my whoopy bobbies and placing them there ;o) laying facedown, I used to do this when I was pregnant with my girls digging hole for my big tummy.

The numbness that was from my armpits (putting on deodorant was very challenging since I was not feeling anything in that whole area similar to the novocaine given for tooth surgery) across my chest due to nerves being severed is slowly going away as I think the nerves are regenerating giving me funny sensations like twitches, tingling,fullness as if a milk letdown.. and some pain. Now I am really feeling the presence of the 2 X 150 ml cushions filled with saline on my chest ( expanders).. kind of a claustrauphobic feeling like wearing a very tight bra with some cotton stuffed in it. I am told that I will get used to the feeling.. we'll see.

um... we did stop at Target today on our way back from the doctors appointment. Pushing the shopping cart which was an action I used to be able to do with a single finger now is an action that limited the amount of shopping I could do. Bummer.. these severed chest muscles have to heal back fast. I am able to lift 1/2 gallon milk with no pain.. which is great !

I had to ask help from someone to grab an item from the top shelf cause I am not supposed to reach up. This is so weird 2 weeks ago I used to get funny looks at the free weight area of the gym cause I was lifting more than some of the guys.

Results from Surgical Pathology, not peachy but could have been worse.

Well it seems like I am in the trenches.

Met with Dr. Chambers today. She said I made a good decision with electing mastectomy versus lumpectomy since the right breast had several other invasive carcinoma modules. (don't want to give everyone a scare but none of them had appeared in mri or mammogram - guess this is the sneaky nature of the lobular kind I wondered what would have happened if I had done a lumpectomy, would they have found out about them during surgery .. or worse.. ?? not found them at all ? )

The left boob was clear did not have any cancerous activity so I do not have to worry about that side.
The main 'mothership' was 2.5 cms they took out 6 lymph nodes and one .2mm one and one 2 mm one tested positive, so there is some lymph node involvement. If only the .2 mm one had was + I would have still been considered lymph negative but with the 2mm one testing positive, I am considered to be lymph node +.
All these brings me to a stage 2 which is still considered early stage.
Next week meeting with the 2 oncologists, and I am planning to find a third oncologist (could be local or from another center) who preferably specializes in lobular carcinoma.. to bounce ideas from. This is my project until next week.

Somehow none of this news came as a shock to me and I am sooo ready to shoot this bastard down you do not have an idea ! Bring it on now I am really p.ssed !@#!@

Oh and my drains will stay with me for another week I think I am moving around too much for them to stop producing stuff, well my theory is if I rest and they stop oozing, I take the drains out and then start moving around the ooze will increase again be stuck in my body. Better get it out with the drains than to be stuck with the yuck.

Having some sleep problems since my body is recovered from surgery however I am not allowed to go outside and do anything so there is a lot of nervous energy, this is soo frustrating..

Systems check & back on nutrition track

After the surgery I feel like the hostile alien mother/command ship has been destroyed and any runaways I will flush out on my own, since now I am aware of the possibility of their presence. My guards (headed by Locke from 'Lost') will shoot them down as soon as they are spotted.


Here is a picture of Me and my Irondawg Candy surrounded by well wishes - great energy from family and friends.








It is the 4th day after my surgery and I am off the pain meds, thought I would do a self-systems check and see what the current state is without any interference from the addictive stuff. I also wanted to be aware of all the signals my body was giving before seeing both surgeons tomorrow. I only will be taking 2 tylenol PM's at night to help me with the sleep.


From a scale of 1 - 10


1 - really bad

10 - Stellar

Overall physical feeling : Sluggish but peaceful like one feels after the flu/high fever. I would say 6/10

Fatigue level : See above, energy levels are kind of low. 6/10

Pain when not moving : None

Pain when moving left arm : Substantially better than yesterday but still painful. ( pain level 5/10)

Biggest problem : Sharp pain in lower end of sternum when doing deep abdominal breathing especially after lying down and when raising the left arm.

Sporadic light headaches ( could be due to dehydration and less than optimal ! nutrition)

Tightness on left side has been gone after doing deep breathing exercises couple of times a day.

Breathing : I think I am still not breathing 100% so am working with the contraption -Incentive Spirometer- that they gave me from the hospital.

I am scared to cough or sneeze although nothing hurt when I did so.

My chest area is totally numb to the armpits.. very weird feeling that one gets after icing an area and touching it. I was told by my breast friend Melody( who is about 6 months ahead of me ) that the feeling will come back slowly.

I kind of freaked out yesterday when I could not move my left arm ( my left armpit hurt) so did a test to see whether there was a damage to the muscle or nerve.

Test: If I tried to raise my arm above heart level while standing the armpit hurt like hell.

But when I bent to a 90 degree angle from my waist and brought my left arm to the same angle to my torso,... no pain.

Conclusion: if the left arm goes above heart level I think there is more swelling on that side towards the armpit thats whats hurting and there is no damage to the muscle. range of motion.

Yey !!!!

So I am mastering doing a pony tail while bending from my waist ;o) Got2 be creative right ?

Action plan: baby that arm ( actually both of them ) give them time to flush out and regenerate. work on draining/detoxing the surgery area using visualization and self affirmation statements.

Start the exercises given by the surgeon for post-surgery once I get the go ahead tomorrow

Nutrition:



Although I have not hit the tempting 'binge wagon' full force I have allowed myself 3-4 servings of desserts on a daily basis which has contributed to a 'tire around the waist' that my younger daughter tactfully blurted out yesterday. 'mom you look fat !' Fred was trying to stop her but did not succeed. Wake up call.


From now on minimal 'empty' calories if I consume it, it must do my body good. Focus on detox foods and good protein. Fresh vegetables.



(Famous last words before I probably will hit the incredibly delicious banana cream pie in the fridge)

Forced myself to take 2 30 minute naps it is hard to sleep when one does not feel tired.

Tomorrow is an important day I have the post-op appointments with the Breast and Plastic Surgeons. I hope my pathology report is ready for the Sentinel Node Biopsy and the results are GOOD !

I want to meet my neighbor - 1st full day at home

Last weekend a new family moved in 2 houses down. I do not know who they are have not even seen them but I WANT TO MEET THEM !

Because .....

They have a Passat( I also drive a passat- wagon) with a Yakima bike roof rack !!!

Bummer what a timing, there are not that many bikers in our area and I would be thrilled to have a riding buddy closeby.

I definitely would have walked down and introduced myself but will refrain myself until at least my drains are out this week so they do not freak out. Fred said they were from N. Carolina.

Home chill day :

Being a gal, getting groomed uplifts me. So during this past month since my diagnosis I have been obsessed with my grooming ;o) .

Today I wanted to get my hair washed however the beautisalon was closed so my daughter Sibel washed and styled my hair and got me a new funky orange nail polish !

We chilled at home watched couple of episodes of 'Lost' ( I am really getting hooked) and 4 of my friends stopped by to chat. Ate a bit too much weighed myself and I gained 5 pounds since surgery OMG.. I have to watch what I am chomping down, or maybe I am bloated who knows ?

It was a nice day the drains are still furiously producing icky stuff... I think it is because I am not lying down resting. The left armpit is still hurting. Tomorrow I will force myself to stay put and take long naps.

Stopped prescription pain meds my body seems to have a natural reaction to any addictive sedatives they just do not click with me my body goes into 'flight' mode while my brain gets all mushy. Not a good feeling needless to say. Have not taken Paxil since the surgery either lets see whether I can fly solo. I know I can do it.

Took 2 extra strength Tylenols in the morning that was it. Will take 2 Tylenol Pm's at night.

Going home

Stayed by myself at the hospital 2nd night and was able to get 2 good chunks of sleep. I had to beg the nurse 'Chi' that I will not need an IV until I am discharged so she took off the bundle of tubes sticking out from my hand. Phew.. that is a relief with tubes sticking out of everywhere I looked like a 'Borg' ! Now I only have the 4 tubes sticking out for the drains which are neatly tucked in my fuel belt ( Jackson Pratt drains are their names just learned )

And ! I was able to sweet talk them into NOT checking me every 4 hours.. yey ! Irony of the hospital is that you are there to recover get rest but they just do not leave you alone .. doing a perfect time in barging in when you are in the sweetest part of your sleep/dream leaving you to struggle to get back to where you peacefully were before they came and poked/prodded and squeezed you.

But of course this did not stop the resident to do a 'rise and shine' at 7 o'clock just at the peak of the percoset affect.

Was discharged and deemed good to go by Dr. Pope. I tried asking him about some herbal supplements, topical medications that would help me recover faster with less scarring but was not humored :o(. ( arnica montana, Vitamin K - Mephyton, Novagel silicone sheet ) After Arnica he said that he lost me.

Had my first outside challenge.. the seatbelt. Put the top part behind me, I should sit in the back for a while I guess unless I want to risk having seatbelt crush and displace my new whoopie cushions ( expanders) that are trying to make themselves at home in my chest.

Came home and shortly after had a 'friendly takeover' of the house by my DH ( Desperate Housewives) friends loaded with flowers,balloons and food. I was kind of spaced out with the Percoset and could not participate in the bustling conversation that much but was very glad that they came over and for the sunshine they brought into the house !

Took a short nap and then was up for the rest of the day.

Got my Arnica montana and Vitamin-K from chamberlains ( my daughter brought them ) and started my GNC multivitamin and 1000 mg vitamin C to aid the healing process.

My body is feeling like it is split in half, I feel like someone took a beating at my torso ( well duhhh !! ) but my legs are strong and restless fidgeting while I am sitting down almost asking me ' Come on when are we gonna get moving again ? ' I did feel general fatigue towards the end of the day. I am trying really hard to follow the restrictions of not lifting more than 5 pounds but it feels so awkward that I have to call someone to carry a bag to the room so I can empty it, or ask for someone to give me a plate from one of the higher shelves.

My left side is incredibly tense. I had to take conscious effort to do some deep breathing relaxation to release the tension, but it came back again quickly. It is almost that side is freaked out, whyI wonder. Sat on the patio while it was raining and listened to some good music and released it while doing some deep breathing and directing a virtual light to the tense area. Felt a little better. There seems to be a sharp pain on my sternum too.

Fred helped me take a shower and change the gauze, everytime I looked in the mirror I felt woozy and had the claustrauphobic urge to yank the drains and the bandage off. I am not a wuss but this really is a weird sensation although I had looked at the before/after/during pictures of this procedure before maybe even too many times.

Tomorrow Monday will be the 3rd day after the operation and I am planning to start weaning myself off the pain medication ( percosed) and transition to Tylenol.