Friday - Tampa C institute umpteenth opinion visit

We made a family outing of it and went to the Tampat Moffitt C hospital all four of us.
The doctor that we saw was quite young and his opinion was as the following.
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I better get the surgery and get other lymph nodes removed because since there were involvement in the 'gatekeepers-sentinel nodes' the gates were open and we do not know which animals escaped and whether chemo was able to zap if any were still out there.
- If they all come out clear, that will be really good indication of my prognosis going forward, meaning that I only had 2 infected, losing the lymph nodes will be collateral damage on the expense of a peace of mind(cant they take them out, analyze them and put them back ???)
- If dead c cells which were fried by chemo are found(he said that they can tell whether they were killed by chemo cause the lymph nodes would have scar tissues on them) that is a very good indication that the chemo worked.
- If live cancer cells are found then that is also good that we removed them.
He repeated what Dr. M said that there is no guarantee that the radiation could kill any remaining cells.
But there is no guarantee that getting surgery will spare me the radiation.
He also said that he was told that swimmers did not get lymphedema, so the worst case I just have to be an ultra distance swimmer, hey I can do that.. but gotta change my gym membership to the Y then, I would get bored out of my head in my gyms pool.
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He had a cool software from Memorial Sloan Kettering in which he plugged in some variables from my pathology (number of + lymph nodes, tumor grade, size.. ) which spit out that there is 25% probability that there is more lymph node involvement. Asked him to change the #of lymph nodes involved to 1 and recalculate and it only dropped to 17%. Hmm.. 25-17 percent are respectable/scary percentages.
He also said that I was too young to take this gamble, and in his opinion not getting the lymph nodes removed is a pretty big gamble. If I was 90 years old he said he would not be that worried.
I am getting more and more pissed off at my first group which did not remove the lymph nodes after the mastectomy they should have done that !!! My surgeon somehow was not able to stand up against the radiation oncologist there and obviously the oncologist(oh I just loathe her)did not care to interrupt anything.
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We agreed that the doctor take my case to their weekly meeting on Thursday to get the opinion of the other surgeons, oncologist, radiation oncologist and call me with what they agree on.
I liked that plan, I will not get my operation there cause I am planning to get it and the boob exchange surgery at the same time if I can. And although the surgeon looked/nice knowledgeable ( well.. not considering that he did not know the most important breakthrough in breast cancer treatment about taxol -- which really surprised us)he really looked kind of young and inexperienced, and I hmmm.. really prefer to have someone with a bit more mileage cutting me open and carving out my lymph nodes.
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After leaving the hospital went to a really cute restaurant Penne Rustica and had great pizza and an amazing frozen banana, cream, caramel icecream.




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I am still feeling really good, wonder when the Taxol will hit me this time it usually hit me on late saturday and sunday.
But I am taking the 30 mg Glutamine (to prevent muscle problems) and the Vitamin B diligently. Have also bumped up eating Activia at least once a day to get the GI track ready for the bombardment, and have hydrated really good this week, and will include diluted Cranberry juice to help the kidneys and the Urinary track.
I am telling you, I am getting to be a pro at this chemo.

Thursday - Chemo #7 , 1 before the last one

Although it is really getting hard to ramp up for working out and just as I am feeling ok get hit by the chemo truck and start over again (this is so demoralizing) I was able to get dressed and head to the gym before work. I think Ferit is right, it is good that I started working, of course right now I really want to do the things I did not do while I was off (curl up on the couch with a book, go window shopping) naturally I had to start to work to appreciate the freedom I had.
I was able to do a 2 min jog at 5 mph, 1 min walk - total of 3 miles averaging 14:20 min/miles with average/max heart rate 166/173 - not bad.
I also set up my 2nd assessment session with the trainer at the gym.
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After getting some work in, we left with Sibel to the chemo session, I recalled how scared/excited I was for my first one, now it just seems like a chore, how ones perspective of things changes I thought, and one gets used to the things that were once viewed as horrible. Chemo is doable and not a biggie, the thing that bothers me most are the wigs, I wish I could go 'commando' but my scalp is soo white.
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Because the oncology office was overbooked, they did not have any 'recliners' for me I was booked to get my chemo somewhere else after I saw Dr. M.
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After grabbing some takeout from Panera, and taking 2 movies to watch during chemo we were at the office at 2:30 and they informed me that my chemo was scheduled to be tomorrow Friday WT.. ??? We had discussed this and I had told them that I was going to the cancer center at Tampa tomorrow and could not make it and definitely did not want to push my next treatment to Monday. They told me I was not booked at the other facility either(which I was assured of 2 weeks ago on the phone). Just as I was sharpening my chemo b..tch teeth to give it to them (even my usually very low BP went up ! ) Dr. M's nurse jumped in rolling her eyes and immediately fixed the things phewww..she warned me that things did NOT go that fast in the other facility and get prepared for a long night.. hmmm.. taxol takes about 4 hours here I thought, how worse could it get?
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During visit with Dr. M we again went over what we were going to do after my chemo. He is standing his ground that I need to get an axillary node dissection and then only if needed( total of 4 nodes test positive) get radiation.He also added that if I chose not to do the surgery ' he is still my friend' that is he will not dis-client me. This is so frustrating that the same group doctors are not agreeing, can't wait to get the opinion from Moffit tomorrow. I am hoping that he will also say no surgery.
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Since I had not gotten my neulesta(white cell booster) last time my blood counts were pretty low, so they scheduled me to get the neulesta tomorrow at 4:30 or if I can not make it in time back from Tampa to get it on Monday at 2:30 which I really do not want cause it is the New Years eve.
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We were able to make it to the hospital which I was scheduled to get my chemo around 5 pm.
First they made us wait at the lobby,
Then I had to go and do the new patient registration .. oh c'mon I thought don't you guys have a central database that they could pull from the oncologists office ? After all it is the same hospital !
Then they brought the wheelchair. That was the last drop, I must have opened my eyes soo big and hollered at the nurse so bad that I just went jogging and what was she thinking ! She said ok .. ok.. and let me walk upstairs. Good thing about being a c patient noone tries to push back that much.
And surprise !! I will be getting the chemo in the hospital room by myself, woohooo I thought, I can even nap if I want to on the bed.
Released Sibel and Ferit came over around 6.
Finally ate my Panera sandwich and salad.
The nurse came around 6:30 and said I will assess you now, and went over the things, blood pressure, weight.
Then around 7 she came again and said ' good news.. the pharmacy got your prescription and it should be ready in 1.5 hours ???????' so this is what Dr. M's nurse was talking about, these people are slow.
They gave my premeds which knocked me out around 7:30.. but then everyone went MIA, we could not find the nurse, finally figured out that there was a shift change and the night nurse was supposed to start my chemo. Ok.
Night nurse came aroun 8:30 finally and started the drip, and informed me that they would be taking my vitals every 15 minutes huh ? no sleep for me ? this is a bit too much I want my oncologists office recliner.
After the 1st 15 minutes the BP measuring cuff on my foot got really claustrophobic and I took it off, and got yelled at 'you are not supposed to take it off, it will measure your bp every 15 minutes'. So no potty break either, ok .. this is not going good. Was able to persuade her to take my vitals every 30 minutes after the hour so i would take it out and put it on before the 30 minutes.
That was the longest chemo session I did. The drip finished around 12 am and we were home around 1, what a night life.
Then we figured out why that facility was so anal, only the chemo patients who have severe problems while getting chemo are sent there, so they really have to be careful with those people. I was just there cause my oncologist office was overbooked.
I was able to sleep well, only got up once around 3 and read QiGonk book until 5 and went to bed again.
Elif had tricked me that there was another package of fudge in the freezer and I spent 10 minutes rummaging through the fridge.. all frustrated, good thing I could not find it. I settled for applesauce with cinnamon, that somehow satisfies my cravings.

First day back at work after 4 months

First went to the heart center for my scheduled echo. It basically is an ultrasound of the heart and all surrounding plumbing I believe. When I asked the technician what the difference between Muga scan ( where they injected radioactif stuff and then took pix of the heart ) and Echo she said they give the same results but the Echo was more comprehensive.. good and I am also being spared the radiactiv injection!
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As soon as I got in the room took the risk of acting obnoxious and said that I really had lost my trust in ultrasounds since I thought that my c should have been caught on my yearly ultrasounds that I had done along with my mammograms, the lady assured me that she'd be really careful. I somehow do not feel comfortable when a health care provider starts chatting at that point I really want them to focus 110% on their jobs, but my technician had different ideas I guess. After a monologue of 10 minutes she finally understood that I was not up to it and continued silently taking pictures. At one point I also fell asleep, because I had this appointment I had not taken any sleep aids so really needed some zzz...
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Took about 20-30 minutes, I asked whether everything looked ok and whether she would be able to give me the number for the LVEF ( Left Ventricular Ejection fraction) which is the number that the Muga scan spits out ( it was 67%) she said that she could not and I had to discuss it with my doctor in my next appointment. I must have given her the 'sad puppy' look cause just as I was leaving she said ' I would not worry about it' And I have learned so far from the healthcare system that if they see something wrong they want to throw that ball waaaayyy out of their court to yours asap to unload the responsibility. So the ticker is good !
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My first working day was interesting, I felt like I had add and had difficulty focusing on the project that was assigned to me,I will not be doing my regular job for a while and will be working on different things which do not have as much urgency.
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And for the first time in a long time I took a nap on my lunchtime.. unbelievable.. forget about Ambien, Xanax, Ativan, Rozerem.. just go to work, somehow that put me to sleep .. tsk tsk...
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After work went to the 1 hour spinnning class and really was able to push myself hard for the first time in a long time.
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There is a salsa class starting mid January we decided to hit the 8 sessions with Ferit that would be awesome to celebrate the ending of my chemo (last session so far is planned to be on January 10)
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Started a new book - Middlesex very interesting.

Christmas day

Hosted a really nice cozy breakfast for family this morning and played greedy Santa. My energy levels are off the roof, so better enjoy this 2 days before my 7th treatment on Thursday. We all ate way too much ( including Candy who was getting little snacks from everyone).
I really lost my efficiency I was dropping stuff, spilling coffee all around the place if it were not for my daughters help I would have definitely messed everything up, I need to catch up on my entertaining skills they certainly have rusted.
All the side effects of chemo except some neuropathy on my feet are gone, and that is not so bad. I had Neuroma which I wore prosthetics for anyway seems like Taxol gave those nerves a nice kick. My sleep seems to have recovered too.
Today we had a conversation about rating how happy one is with their lives and was asked to rate it from a scale of 10. I thought and said 6, but thinking about it I actually fluctuate between 3 and 10, since I have started experiencing my high states which I just love ! And of course there are those down moments where my treatments just bring me down. I hope I never ever need to go on antidepressants, no wonder the fine print says that they could cause suicidal thoughts ! geesh I really find that funny in a sick way.. Oh so and so committed suicide cause he was on antidepressants, I thought the whole point of antidep.. were to make someone feel happy or maybe not ?
Tomorrow first day back to work after my echo appointment at the Heart Center. I actually am kind of excited. What a way to start work after being off for 4 months, first day .. coming in late doctor appointment, second day off in the afternoon - chemo, third day off in the afternoon - seeing another surgeon in Tampa.
Now that's what I call easing back into things ;o)

Kundalini applied to RPM-cycling ?

Well since I was able to get some zz.. for the past 2 days(did not even get out of bed once last nite yey !!!) I started to resume the life of a normal human being, and dragged my sorry butt to the 9 AM cycle class.
Ok the class is nice.. but what if I try to incorporate the breath of fire (A cleansing & energising breath, powered by abdominal contractions). So I started to do it during the fast sections and did the hills breathing normal with the group, it was amazing to watch the breath of fire first increase then stabilize my heart rate !
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Spent the rest of the day doing last minute shopping since we are hosting the christmas breakfast for our family every year. Maneuvering my shopping cart through the bumping cars maze in Publix I finally was done and made it home.
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The house had really been neglected and totally messed up during these past couple of months so tried to bring some kind of order. Surprisingly the girls cooperated and actually helped out ? Could it be because there were some presents under the christmas tree that were not opened yet ?
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Managed to squeeze in an hour of Kundalini basic breath and spinal flex too !
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Today I realized how much I lost from my pre-illness efficiency, I used to get a lot done during the day even when I worked now it feels like I am spinnning my wheels.
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HOW ON EARTH AM I GOING TO START WORK WEDNESDAY ???

6th treatment .. hmm this is not like training

When I am training for an event I break my body down and then when I rest it overcompensates and makes me stronger so in my next session I go in stronger. Well that logic does not seem to work with chemo. My body somehow is not overcompensating after each treatment but is actually taking more time to recover. Or the insomnia is taking a toll on me. I prefer to think the latter cause sleep is when I am supposed to recover most.
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Last week I caught a cold bug(ran a slight fever), or got hit with allergies, had some GI problems that mimicked IBS(the oncologists nurse said that this was one of the side effects of taxol) .. and to top it off had severe insomnia basically I was kind of out of it for about 8 days, no working out just idling around did a lot of good reading though. Some weird weight gain also occurred ( honestly there was NO bingeing ) and I started to lose my eyebrows !Just as I am coming to the end of treatment all these hit me.. arghhh ! I had heard that the eyebrows go last sometimes even after the chemo ends, but was hoping that my bushy ones would withstand the chemo blast. Oh well I still have some that I can draw/fill in hopefully a couple will stay if not, not a biggie they are supposed to come back in really fast.
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Because my white blood cell counts were so good Dr. M decided not to give me the Neulesta shot this time after chemo. I actually was very happy about his decision cause that 6000 usd shot gave me some weird side effects. However the lack of it might have caused me to catch a cold but I am able to control it with Claritin-D so I am thinking that it is allergies.
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There was also a slight feel of neurapathy (tingling sensation like when you come in from the cold) in my toes but probably because I forgot to take the Vitamin B I was supposed to be on .. tsk tsk..it is gone by the 9th day.
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Insomnia was the real problem, after my 5th taxol treatment I was not able to sleep well for about 1 week, but this time it really got worse. Tried several sleep aids ( Ativan, Xanax, Ambien, Roserem ) the only one that slightly knocked me out for a couple of hours was otc Benadryl surprisingly. Finally the oncologist gave up and told me to contact my pcp for a sleep study. But on the 10th night (Saturday) I was able to get a good nights sleep with 1 Ambien yey ! Although they are saying it should not be the steroids or the chemo I strongly think it is so. I just have to expect having sleep problems after the last 2 chemos.
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Sunday I was able to do a 6 mile long run although I have not run for almost 1 month (except the 1/2 mile jogs that I did before my weight sessions) and felt really good.
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I have to keep up with the Kundalini Yoga practice the center has closed for the winter solstice and I had not been practicing. Last night when I was feeling really drained just did the breath sequence and that immediately perked me up, it might even have helped me to go asleep finally.
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Right now reading about Qigong my therapist practices it and suggested that I look into it.
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I also had an appointment with a cardiologist, I do not have any problems and my oncologist did not think I needed to see one but I insisted just to assess the ticker after the Adriamycin treatment. He hooked me up to a holter which is basically a little device that I hung on a lannard which recorded the 3 electrodes for 24 hours. I did a short run at the end of the 24 hours just to give them some data from the ticker when I am working out. Next wednesday they will also do an cardio echo ? The cardiologist had done the ekg and listened to me and said that he did not think anything was wrong. I have the follow up appointment in 2 weeks to go over the results from both tests.
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Got a 1 hour massage at the spa, it was good when it lasted I wish they would have let me just take a nap right there ;o).
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This Friday I also have an appointment at the Moffitt Cancer center in Tampa top get another opinion regarding further treatment. I like my oncologist and he is the one who will be following up on my treatments going forward but I am not leaning to getting more surgery at this point which is what he wants me to do. We'll see.
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Starting work this wednesday it will be quite interesting since I have been away for at least 4 months now !

Chemo 6/8 - DONE ! Boobs inflation - DONE

The plastic surgeon expanded me up for the last time now I am at 500 cc's I guess if I ask he could pump me a bit more, will think about it.
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Interestingly I have another decision to make now in this area. If I am getting radiation treatment the standard protocol is to do the exchange surgery(where I trade my turtle shells for soft silicone cushies which will enable people to hug me instead of bouncing back from a hug) 6 months after the rads are done, because the flesh there basically becomes as inflexible as a beef jerkie after being fried by the rads and healing problems are encountered. He has presently dealt with several problems with exchange surgeries done that way (6 months after the rads) so he suggested that he do my surgery before I get rads after chemo. The radiation apparently is not impacting the implant material itself but my skin,flesh. It is a probability that the radiation might cause capsular contracture which might require a bit tweaking in the future but he seemed to be more comfortable with that.
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So yet another decision to make.. joy ! He will call the radiation oncologist to see his take on it.
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Went to my chemo and went over my conversations with the Clearwater surgeon with Dr. M, he is still standing his ground insisting that I should get the lymph nodes removed and if no more test positive I should not get radiation at all. He thinks that radiation in my case is an overkill and definitely is not agreeing with the other doctors. So I will be waiting to meet with the Tampa Moffitt surgeon who hopefully will refer me to the radiation oncologist at Moffitt ( they would not give me a self appointment) and then the final decision will be made.
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At this point I am really torn. My gut feel says go radiation, but am not quite positive.
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My older daugther Sibel was my chemo babysitter and I loved it! We watched a movie ' My Super Ex Girlfiend' by Umma Thurman(well I kind of konked out at the beginning thanks to the benadryl). At some point I got craving for a frosted chocolate cake and she went down to the cafeteria and grabbed me one. It lasted forever we were there at 11 oclock and it was about 5 by the time we left.
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As expected I did not get any sleep that night, thanks to the steroids ! We got the tree decorated though !

The surgeon that we saw at Clearwater pretty much said that the decision to have further surgery or not had been made after my mastectomy before chemo, as the additional surgery would have been needed to be done at that time. At this point he does not see any reason for me to get further lymph nodes removed especially if I am going to have radiation.
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We have 1 more doctor to see in Tampa, however he is a surgeon too, I wanted to talk to another radiation oncologist.
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I wonder if my hospital has the latest radiation technology ? Hmm.. have to check into what to look for.
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Restarted upper body weights today and was able to do a 1000 meter erg ! Maintained a 2:10 pace for the first 500 meters but then blew up and finished it at an average of 2:13.

Back leading the 5:45 am cycle class.

Last night the aerobics coordinator called and asked whether I would like to take the Tuesday morning 5:45 am class back and that she would be my permanent sub if I needed to take off for any reason. She has been really nice in accomodating me for the past couple of months, told her that I would gladly take it back and would call her if I did not feel up to teaching at any point. It was a great class this morning and I was really happy to be back with all the early morning cyclists ! I just have to make sure that I challenge them enough because I can not gauge the intensity accurately from my own effort level.( my only challenge was to find a top that fit since all my old ones are feeling really tight with the expanders now ;o) )
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I had a lot of fun stuff going on this weekend went on an easy 33 mile ride with the slower bike gals 'The Flamingos' then went to the christmas party for the fast rider gals which I used to ride with (Bobbies.. babes on bikes) gals on Sunday- won a pump at the raffle ! I really needed a new pump because my old one requires a lot of effort and my chest muscles were kind of talking back every time I try to hit 110psi. Friday evening went to a xmas party for my rowing club and it was great to see the scullers since I have not been out on the water for 4 months now almost.
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The lake Fairview water is so contaminated that I am scared that if I take a spill I will catch some weird bacteria so no rowing until I am out of chemo.
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Today we are heading off to St. Pete to see another surgeon to get an opinion on whether I should be getting further surgery to remove more lymph nodes ( since 2 out of the 6 lymph nodes in the sentinel node biop had tested positive but were relatively small - .2mm and 2 mm)
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I am having major mood swings but I now know that no matter how bad they are I will swing out of them, so I just keep low and do not bite anyone during those times. I guess I have hit the chemopause since I also seem to be getting 'head sweats' especially at night. It is a weird feeling and I am glad that I am bald !
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Started reading the book 'Meditation as Medicine' which my father had given me a couple of months ago, because I intend to work on the mind-body connection to ward off this C to get a foot hold again.( I thought I was previously doing everything else that was suggested this is the only piece that was missing)
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Little did I know that this book was about Kundalini Yoga which I am definitely becoming addicted to.. well.. signs are pointing towards this from different sources, so I guess I will pursue this path. I have heard that the Tuesday evening one is the real good session ( plus they have soup after the session !!)will try to hit that one next week.

They lied Taxol sucks too !

When I was on the AC chemo all I heard was that ohh.. once you are done with this, Taxol is a breeze. Maybe I was expecting to be perfectly normal and had high expectations of myself( which is unrealistic duhh.. this stuff is designed to kill cells !!! ) or this stuff really did not agree with me.

Since they gave a huge amount of steroids I was the Energizer bunny next day but crashed the following day, no nausea but felt really tired. It also did away with my sleep(which was probably looking for an excuse for pulling an MIA anyways) for at least 3 days. And gave me restless leg syndrome where I was constantly fidgeting. Ativan and Ambien are not doing the trick. I was also given a high dosage(30 mg/daily of Glutamine )to prevent neurapathy and muscle aches paind.

We had gone to Ft. Lauderdale for Ferits Company Holiday dinner past weekend and being stuck in a hotel room unable to sleep was no fun. I was cracking up at myself, while trying to keep warm wrapped in blankets, futile attempts to get rid of the restless leg syndrome,jumping up and down, doing yoga in the small bathroom, trying not to wake up Ferit. I gave up trying to go back to sleep and ended up getting a lot of reading done sitting on the toilet.

Sunday when I tried to walk around the block I had the feel of my legs buckling underneath me and my ankles ached ??? I thought wtf !! ( pardon the lang) I never ever had muscleskeletal problems this was a huge surprise. I got really upset until I posted my symptoms to an online forum and the girls there said that interestingly the 1st treatment of taxol was the worst, somehow the body does get used to it. Phew !

Today is the 6th day and my joints feel recovered we'll see how my weight session goes tomorrow.

Some weight damage was done though, I do have an excuse this time= The steroids ! ( not really it was my usual 'comfort food seeking when sh.. hits the fan') I am up at 156 pounds.( gained about 14 pounds since this all started back in August)

Went to see a radiation oncologist to continue my poll on whether to get further surgery to remove more lymph nodes or rads and this guy who is in the same group as my oncologist and he basically said that I needed rads for sure and additional surgery to remove more lymph nodes was a totally useless act only for staging purposes to determine the treatment(whereas my oncologist wants me to get the surgery).

We have appointments with 2 more doctors in Clearwater and Tampa the upcoming weeks and by the end of this year our decision will be sealed. I am swaying from one side to the other, all the doctors seem so convincing !

Resuming/ recap

Well after a short break from blogging I am back with a new mindset.

See it is really hard to 'not' think about cancer all the time especially in my case since my treatment plan is still not finalized and pretty much left to me. What happened was I read so much to the point that I spiralled out of control in my 'quest' and burnt myself out going into kind of a denial phase which made me go down since I felt that I did not have any control over all the crap that was happening. So no more medical reading for me (at least for now)Going cold turkey on the anti-depressant Paxil that I was on did not help either ( yes I did know that one is supposed to wean off not stop suddenly but thats me, I was done with it the stuff made me a mellow person which I did not like so I just had to get rid of it to get 'me' back ) Compliance never agreed with me.

With my 45th birthday which was on the 18th my perspective has changed. There is also a saying that I really liked from the last book I read ' Eat Love and Pray' that agrees with my mentality. I could not find it to quote right now but basically it said never let go of yourself always go up.

I will basically kick ass my own way.I was previously trying to follow other peoples footsteps during my recovery phase trying to sit at home relax, read book and all that 'sounding relaxing' stuff that cancer patients are supposed to be doing. Well that just plain drove me nuts I had to get out of the house or keep busy. So I guess everyone has their own way that they are comfortable dealing with life changes.

Either there is some negative energy in the house or there is something wrong with my mind because I just can not sit at home.(when I said I want to totally redo our bedroom cause the 'feel' is not right Ferit with his usual down to earth attitude said 'Honey I will not let you translate your mental problems into $$ since that is not going to solve them' . It was a good try on my part though)

I am in search of a personal trainer who would be willing to work with a chemo bitch(which I can be) since I have gained some weight which is making me feel bad about myself. The hard part of my treatment is over and the next one is starting on the 29th of November I am ready to get back there. To test did 27 miles of the Horrible Hundred ride which is my birthday tradition since 2002 and although the heart rate was about 10 bpm higher than usual I was ok. ( since I wrote this I started working out with my old trainer.. it is challenging but he is managing to give me stuff to do that makes me sore in a good way taking into account my surgery / chemo)

Decided to start back to work in 2008. My chemo will still not be over but will only have a single treatment left. Then there is a high probability that I will be getting more surgery to remove additional lymph nodes, I will be meeting my surgeon and 2 others for secondary opinions on this.

What I learned from talking to other survivors with removed lymph nodes is that if one is careful to build the strength back up lymphedema is not a problem although there does not seem to be much research on this subject. Dana Farber Institute from Boston had a research on analyzing lymphedema in rowers which I believe showed that the rowers did not get lymphedema. I was thrilled to hear about this and have called the contact provided in the research article to get the complete research article published on this. So as of now I will not be working my upper body with heavy weights for at least 5-6 months after surgery, then will start back up very slowly. Swimming is said to be really good for me so I think I will start hitting the pool pretty soon although I really do not like the LAfitness pool, it is like bathtub too warm, however there are too many kids practicing in the Y pool and I am not positive on how hygienic it is ! Maybe if I go in the mornings it might be cleaner than evenings.


Emailed my Breast Cancer support group stating that I would be happy to share training plans/tips for any gals who might be thinking about tackling the Danskin tri in may. So far only 1 seemed to be interested.

Contacted the aerobics coordinator stating that I could start subbing some of the Tuesday morning 5:45 am classes if she wanted me to.

As of remaining physical symptoms with the expanders I feel like having 2 turtle shells on my chest and there is no way I can lay facedown they still have not blown them up to where they want them to be. There is a constant tight-bra feeling but I got used to it and it does not bother me anymore. Arm/upper body strength and range of motion is almost back to where it was.

One other important thing, I think it was 2 weeks ago I got the weird feeling that the last trace of cancer had left my body at that specific second. I said ' I'll take that ;o)

Life is good !

Couple of pictures from the time gap.. I have 6 wigs now !

Hay ride at the christmas tree place and various other events.

Ongoing - Workout log

10/16 - 1.5 miles walk 27:37 18:20 mn/mile 3.3 mph maxhr/avhr-127/117
..........time in heart rate zone: 13:36
10/17 - 2.25 miles walk 38:26 17 min/mile-3.5 mph maxhr/avhr-138/125
..........time in heart rate zone: 30:26
10/18 - First bike ride after surgery 33 minutes 5-6 miles avhr/maxhr 127/150
10/19 - 3.3 mile walk 56:00 17 min/mile-3.5 mph avhr/maxhr-121/137
..........1.5 hour Kundalini yoga
10/20 -16 miles bike ride on trail avg speed 11 mph avhr 124.
10/22 - 4.5 miles walk/jog 1:13:47 16:10 min/mile avhr/maxhr- 124/154
..........Time in Target Heart Rate zone ( 116-135): 55 minutes
10/23 - Spinning class 43:47 avhr/maxhr - 132/150
..........Time in Target Heart Rate zone ( 116-135):20 minutes
..........1.5 hour Kundalini yoga session
10/25 - chemo
10/26 - 1 mile walk 20 minutes avhr/maxhr - 114 125
..........Kundalini Yoga session.
10/30 - Spinning class 42 minutes avhr/axhr - 132/160
..........Kundalini yoga 1.5 hours

November :

11/2 - 2.8 mile walk 44 min 15:45 min/mile avhr/maxhr- 134/160
..........Kundalini yoga 1.5 hours.
11/3 - Spinning class 40 min avhr/axhr - 142/167
11/4 - 6 mile walk 1:40 mins 16:22 min/mile avhr/maxhr - 129/163
11/5 - 17.2 mile bike ride 11.7mph speed avhr/maxhr-133/147 time in zone 1:00
11/6 - Spinning class 40 minutes avhr/maxhr- 141/169
..........1.5 hour Kundalini Yoga
11/7 - 3 mile walk 48:00 mins 16min/mile avhr/maxhr - 134/
11/8 - 1 hour hot power yoga
..........Chemo #4

11/10 - 2.5 hour Kundalini Yoga(mainly meditation and breathing-breath of fire)
11/12 - 3 mile walk
11/13 - 3 mile walk
.........1 hour Kundalini Yoga
11/14 - 17.4 mile bike ride 12mph average 1:27 mins avhr:136 maxhr:151
........time in zone 47 minutes
........1.5 hour Kundalini Yoga
11/16 - 1.5 hour Kundalini Yoga
11/18 - Horrible Hundred ride- did only 26 miles 2:00 hrs 13 mph average.
........avhr/maxhr - 161/190
11/20 - according to my heart rate monitor did some kind of 44:00 minute cardio, do not recall what !! avhr/maxhr - 146/171 .. looks like spinning.
11/21 - weight training
11/22 - 1 hour indoor cycling/spinning - avhr/maxhr- 150/171
11/23 - weight training
11/24 - 41 mile bike ride with Florida Freewheelers C/D group picnic ride, 14.2 mph, 2:47:00 hrs avhr/maxhr-155/177
11/25 - 6 mile walk/jog shuffle, 1:27:00 hrs avhr/maxhr-160/184-- a bit high have to check whether my red blood cells dropped. 14:30 min/mile. 1.5 minute jog, 1 minute walk. Expanders which are looking like monster boobs might also be compressing my rib cage preventing me from breathing well.( rumor is a gals ribs cracked from the pressure of an expander)
11/26 - Weight training and 10 minute erg - left chest muscle is challenged might need to give a break.
11/28 - 1 mile run 12:40 min/mile. weight lifting
11/29 - 1st Taxol treatment chemo#5/8


December

12/5 - 1 hour lower body weight training, 1/2 mile run. Chest muscle still compromised cannot do any upper body or core.
.......1.5 hour Kundalini Yoga
12/6 - 1:08 hr bike ride, 14 mph, avhr/maxhr-158/170 17 miles
12/7 - 1 hour weight training, 1 mile run.
12/8 - 1.5 hour Kundalini Yoga
12/9 - 33 mile bike ride, avspd 15mph, avhr/maxhr -
12/10 - 1 hour weight training, lower body, 1.5 mile run
12/11 - Led the 40 minute spinning class(for the first time)avhr/maxhr-163/178
12/12 - 1/2 mile run,1000 meter erg at 2:13 pace. 1 hour weight training ( upper body, the chest muscle did not talk back I was even able to hang )
12/13 - 6/8 Chemo taxol.
.
.
12/23 - 6 mile jog/walk. 1 min run/1+ min walk. 1:30 hours 15 min/mile -
........avhr/maxhr - 158/183.
12/24 - 53 minute spinning class avhr/maxhr - 161/178
12/26 - 51 minute spinning class avhr/maxhr - 154/174 - was able to exert myself really good this time.














Training plan for the Jacksonville Breast Cancer Half Marathon:

Week Start Date Length of long jog and/or walk

08-Oct-07 Chemo on thurs 4
15-Oct-07 4
22-Oct-07 Chemo on thurs 5
29-Oct-07 4
05-Nov-07 Chemo on thurs 6
12-Nov-07
19-Nov-07 chemo break for t-giving before going on to Taxol !
26-Nov-07 Chemo on thurs
03-Dec-07 6
10-Dec-07 Chemo on thurs
17-Dec-07 8
24-Dec-07 Chemo on thurs
31-Dec-07 6
07-Jan-08 LAST CHEMO ON THURSDAY ON THURSDAY JANUARY 10 !!!
14-Jan-08 8
21-Jan-08 10
28-Jan-08 6
04-Feb-08 4
11-Feb-08 Event on Saturday

Day 6 I am coming back up again-taking a break from blogging

Well it seems like by day 6 I am up and about again. Went to the 5:45 am spinning class then went to my kundalini yoga session, went to Nuge who prepared me an awesome lunch,ran some errands and took the girls to the swim practice. I still have nausea however I learned to live with it and am eating well to recover from the treatments.

I will be giving a break from keeping my blog. Just a change of life need to stay away from the pc a bit to enjoy my days off from work between treatments.

Couple of down days

Well it seems like chemo took my 'edge' the 3rd time.

1st day was ok.

Friday I had boundless energy (2nd day )I even took a 1 mile walk and drove to my Kundalini Yoga session was out all day and even had company for dinner.

Distance: 1 mile
Duration : 20 minutes
Average heart rate: 114
max heart rate: 125

Then Saturday the 3rd day nausea/fatigue took over big time so I was kind of dragging in the house and took a big nap. I am taking every anti-nausea med that i am aware of except steroids which I refuse to take, but they are not quite cutting it. No throwing up but just an constant ewww feeling.

Saturday night Ferit took me to see 'Dan In Real Life' it was a cute movie.

I am so lucky that I had completed Ironman events before, this is the exact same feeling I had after each one for about 1 day, fatigue, nausea. I feel for pregnant gals who feel this way for a couple of months !

I read some research papers on Lobular Breast Cancer and felt the need to reach out for another opinion, now I am considering Dr. Massimo Cristofanelli (MD Anderson Houston), www.breastlink.com or Benjamin O. Anderson from University of Washington
I have to do this asap.

The highlight of my weekend was that Sibel came home and is staying until Monday morning.

Hold on tight for a sample chemo cost table

In a forum post saw the following breakdown for the treatment I am getting, oh boy am I lucky to be insured.

Treatment 1 through 4 ( AC-chemodrugs +Aloxi-antinausea med+Decadron-steroid)
4 X 1200 = 4800

Treatment 5 through 8 ((taxol, decadron, aloxi, benedryl and zantac)
4 X 3074 = 12,296

Treatment 1 through 8 Neulesta shot to boost the white blood cell production.
8 X 5600 = 44,800

This is only the treatments given at the doctors office until end of chemo, I am not even considering all the different the antinausea meds that I am given ( one is 100 usd a pop, the other is 500 usd for 18 tablets)

Total : 61,896

Mind you this is only the cost of chemo.. the presurgery diagnostics cat scans, mris' biopsies, surgery costs are not included.

Plus the antihormone meds that I probably will be taking after chemo are an arm& a leg do not even want to think about that.

Chemo week- prechemo burst of activities -Instant Boob job-Bye Toto

Monday I recovered from the busy weekend doing nothing, since my energy levels were kind of low.

Tuesday bounced right back with a vengeance, I was determined to do a lot this week before Thursdays 3rd chemo session:

Tuesday:
Did the 5:45 am spin class, this time I was even able to break a sweat !!

Duration: 43:47
Average Heart Rate: 132
Maximum Heart Rate: 150
Time in Target Heart Rate zone ( 116-135):20 minutes

Later went to the Kundalini Yoga session at Altamonte. This is so different than the traditional Power Yoga I have been going to. There is a lot of breathing exercises that work with body movements to massage theinternal organs(at least thats what it feels like) and one exercise is 'belly laughing' where everyone has a laughing fit, well I found it so stupid that I actually broke into laughing histerically. They say laughter is a healer guess thats what we were doing, got a kick out of it.

The owner never claimed Toto(isnt this so sad) so Erin adopted him. We are already missing the little bouncey rascal !

Wednesday :

Did a walk and threw in a couple minutes jogs here and there. Finally we are back out there with Candy the Irondawg with a long run !

Distance : 4.5 miles - 16:10 min/mile
Duration: : 1:13:47
Average Heart Rate : 124
Maximum Heart Rate : 154
Time in Target Heart Rate zone ( 116-135): 55 minutes

Went to the plastic surgeon who finally was able to start the inflation of the expanders, it is really weird to see your boob swelling while you look at it. They injected 100 cc's saline in each breast. I am up to 250 ccs in each, I think they will go up to 400. Did not have any discomfort from the inflation or afterwards, just the regular feeling like wearing the heart rate monitor strap too tight.

I feel like a kid trying to cut school.. or a cat that is being dragged to a lake, I really do not want to go to chemo this thursday argghh.. I have heard that the 3rd one is hard cause you know how crappy you will feel and it is not the last one either. Just have to suck it up and do it. I will be hydrating like crazy today and take lots of good protein so I can recover quickly from the hit I will be getting tomorrow.

Swim to bike transition video and biking pix

Finally snagged the camera from Elif to download the picture/video from my camera. Wetsuit stripper video


Picture of me and Penny after our 16 mile ride.



And another Toto picture I just can not resist !

Enjoying days before treatment #3

Well as far as I can tell I am pretty much shot for about 1 week after chemo then slowly start back up.

Enjoying the car show with Ferit and Stephanie on Sunday. They would not even let us TOUCH the cars..

Toto Toto Toto !

We had an interesting (to tell the least) start to Sunday. To cut a long story short we ended up with a Yorkie mix(do not think she is fullbred) adorable(not potty trained we are working on that) doggy who wandered into our garage.

This is how she looked when we found her:



Spent the whole afternoon posting posters around the neighborhood to find the owner, at night was advised that it might belong to a house 5 houses down the street. However .. the owner has not claimed her yet even though I left a message on her door. I am tempted to keep her as they play great with Candy( 2 of them look hilarious together .. the little one - Toto as we named it - going on its hind legs to make itself bigger and trying to attack Candy) and it certainly has a spunky character, is not a incessant barker, is extremely social and is very smart. But.. she will have to go :'o(

After some TLC ... here is Toto



with Candy :

GFT Bike Ride and Welcoming Stephanie to Orlando

Saturday started pretty gloomy we drove up to Clermont in heavy rain,so changed our plan to first watch the GFT swim to bike exit, then do a short ride if the weather lit up.

Parked the car in a 'really good ;o) ' spot ! Headed down to waterfront park and watched the sufferfest begin for the Great Floridian and Florida Challenge.

An interesting video to check out if you have never seen what a 'wetsuit stripper' does on the swim to bike exit..hey ! don't get all excited nothing too kinky (although I was secretly hoping that a 'mishap' would happen lol)

Here is a picture one of the spectators who came to cheer their participant on.



At one point we decided to head back to the car and start our ride on the trail, as we approached the spot where we parked the car we saw a commotion.. they were towing cars !! And had the car who had parked in front of us already on the tow truck ! Yikes ! Penny ran up and at the last minute was able to save her car from being towed. Boy would that have been an expensive parking fee.

Started our ride from Waterfront Park to Killayney which was about 8 miles one way keeping the heart rate below 135 was really a challenge at one point I wondered whether I could still balance on the bike at that low speed ! I never worked out at that range and there were very slight hills on that portion of the trail that made the heart rate creep up a bit. A cyclist in front of us saw a bobcat I have never seen one yet. Overall it was a great ride and I was tired, came home and took a 3 hour nap.

Stats:
16 miles
average speed 11 mph !!!!!
average heart rate: 125
max heart rate: 204 --- not true must have crossed some power lines.
Time in Zone ( between 118 and 135 :)


In the evening we went to pick up Stephanie from the airport, I was really excited since I had not seen her in 2 years and we had a lot of catching up to do. From the airport directly headed to the Fundraising party for my relay team (Breast Friends) for the Relay for Life which I am raising funds for. Won an Entertainment book, a Tijuana Flats gift certificate and a Gift certificate from a nail place in the drawing. Did not get that lucky with the Chinese auction.. was trying to get the doggy bag.

Going to watch the Great Floridian ! And my tri buddy Stephanie is coming !

Tomorrow saturday October 20 the Great Floridian Ironman distance triathlon and the 1/2 Ironman 'The Challenge' will be held in Clermont.

Me and Penny will ride from Killarney station to Waterfront park to watch the participants exit the 2.4 mile swim and head off to the 112 brutal bike course around 8:30. The energy in these events are spectacular and really is something to experience even as a spectator.

Great Floridian has a special place in my heart because it was my first Ironman event ( completed GFT in 2003 and 2005) I always try to be there, either as a participant, a volunteer or like this year a spectator.

Dug out some pictures from GFT 2005,

My shorts had smiley face reflectors sewed on :0) you can tell that I am extremely happy to start the final leg of the tri after 2.4 mile swim and 112 mile bike.




Me and my daughters at the finish line after a sufferfest for 15 hours and 40 minutes. It is hard to believe that I was actually hosting the C beast at that time too.




Tomorrow is also very exciting because one of my tri-buddies is coming to visit us for the weekend, Stephanie !!

Here is a picture of me and Stephanie at Santa Cruz ( where I had completed the Big Kahuna Half Ironman) in 2005 it was an awesome event although it was kind of scary being that close to the sea lions !

Kundalini Yoga

Started the day with a brisk walk with Candy:

Distance:3.3 miles
Time : 56 minutes - 17 min/mile - 3.5 mph
Average Heart Rate: 121
Maximum Heart Rate: 137

Went to the Kundalini Yoga Center at Altamonte unfortunately was late due to a horrible accident on I4 but was able to join the session.

This was not an intense session like the Healing Circle and I was able to work on my breathing and meditation. Will try to go there 3-4 times/week this upcoming month.

Stomach is still not 100% up to normal but energy levels are coming up definitely.

First Sun Salutation attempts and bike ride

Last night the binge wagon hit again, it seems like the body is trying to compensate for the lack of food intake on the 7th day of chemo when the nausea lightens up a bit. This time the damage was hostess cupcakes (7 of them) and a couple of caramel candies.

Greeted the morning by doing a couple of sun salutations.. to my delight the chest muscles are even allowing me to plank for a couple of seconds woohooo !!! I heard that expansion weakens the pectorals, might take that into considering while inflating the boobs.

Later went on a bike ride with Zeren who turned out to be a 'natural cyclist' she was hauling .ss with excellent bike handling skills even though it was her first time on a bike since several years. Unfortunately my heart rate monitor was dictating my pace and I had to slow her down. The pix is a bit crooked but we- the biker chicks look darn good ! :



Duration: 33 minutes
about 5-6 miles forgot to reset the bike computer
Average Heart Rate: 127 - definitely higher than it was before.
Max Heart rate: 150

It was my first time on my bike since the surgery.. and it felt really good.

Workouts monday-wednesday

Taking advice from Mary Ann keeping the heart rate in check, which requires me to walk not even jog.

Monday:
.75 miles walking with Candy
16:23 minutes - stopped a lot to talk to neighbors who noticed my 'new hairdo'
not much of a workout.

Tuesday:
1.5 miles walking with Candy
27:37 minutes 18:20 min/mile 3.3 mph
maxhr: 127
avhr: 117
time in heart rate zone: 13:36


Wednesday :
2.25 miles walking with Candy keeping the heart rate between 118 and 134
38:26 minutes - 17 min/mile - 3.5 mph
maxhr: 138
avhr: 125
time in heart rate zone: 30:26

hmm so if I keep this pace at the half marathon it will take me 3:45 hours.. it will be interesting to get lapped by the fast marathoners which will happen since it is a 2 loop course.

Pleasant Tuesday Afternoon

Had a very pleasant afternoon thanks to Zeren who suggested to go to a movie, and to our delight the movie Jane Austen Book Club had started. We have a pretty volatile (to tell the least) book club and it was quite entertaining to see that similar group dynamics/dilemas which were present in other book clubs too ( the 1st episode of Losts 3rd Season also started with a brawl at a book club - you can watch it online from abc.com it was a hoot ).

Books are so personal that it is really hard to keep the discussions ' not personal' ;o) but I look forward to our meetings every month even though we have met some rough spots I still think it is a great get together.

Went around The Pointe for a while before the movie, did some plastic damage. Got a chuckle when the girl at L'Occitane suggested that I use a certain kind of shampoo- we laughed and had to explain to her that I actually was bald and had a wig on - guess that is proof that the wig looks natural ( or the girl needs glasses.. will take the first one )

After the movie we were both 'Jane Austen'ed, I confess to not having read any of her novels but I do have a Jane Austen Collection at home which I will start asap as soon as I finish 'The Sun Also Rises' - Hemingway which is draggginggg !

Afterwards when I went to pick up Elif from the Aquatic center her friends first said 'Hi' and then they went 'ohhh and came and started touching my wig' when they first saw me they had forgotten that i had my hair chopped off, then realized it. So I think this wig (the long one) passed the test.

My nausea is still continuing but I am just learning to live with it. Found that if I forced some food down it actually helps. The challenge is not to succumb into the urge to gorge on comfort foods all the time because I know too well where that leads to.

Bonfire for cancer books ? Something funny

It's really good to have a lot of resources but I think I am really overloaded with brochures, books, self-help for C.. stuff and today got a sudden urge to make a big bonfire on the lawn and torch them all.

Guess it is time to give a break from researching/reading, need to refocus and start living my normal life asap. Guess returning to work next month after the first part of the chemo is done will be good for me.

Learned that people who did not drink alcohol were more susceptible for chemo-nausea, so as Ferit says : 'Smoking does not hurt you, drinking is good for you'

A twisted way to put things into perspective but right within this context I must agree at least in the literal sense.

Relay For Life - I am in the Breast Friends relay team

Every year I try to participate in an event that is benefiting a certain cause. For the past 5 years this has been the MS150 bike ride benefiting the National Multiple Sclerosis society.

This year due to apparent reasons I will be participating in events that are benefiting the fight against cancer and cancer awareness programs and have joined the 'Breast Friends' team for the Relay for Life that will be held in Hunters Creek on November 10.

This is an overnight relay walking event where each team will be represented by at least 1 member at all times.

Unfortunately that is the week of my chemo treatment ( all of the events that I want to join seem to be on my chemo weekends ! ) so I think I will still be able to do the opening lap at 3 pm, but am not sure whether I will be able to hang around for a long time.

Here is my web page:

Look Good Feel Better program

Monday I went to the Look Good Feel Better program sponsored by:

National Cosmetology Association (NCA)
Cosmetic, Toiletry, and Fragrance Association (CTFA) Foundation
American Cancer Society (ACS)

Here are all the goodies that I got in my bag, woohoo pretty cool stuff from Estee Lauder, Chanel, Aveda, Mary Kay and other brands. Some bags had a Mac brush. Darn ! not that I needed any more makeup brushes but I still was eyeing other participants goodies like a kid looking at other kids halloween candies/ christmas presents.





We were 4 gals facing the chemo challenges, the session was led by a counselor appointed by Florida Hospital Cancer Institute and a lady who helped us do a 'makeover' starting from cleansing to putting on makeup. There was a 77 year old lady who had never done makeup and I suspect who never was exposed to the sun, her complexion was as translucent as a babies !

We were also instructed on how to 'dress' our heads, how to wear the wigs, how to care for them how to manage nails during chemo ( yes nails are also affected, manicures/pedicures are a no-no for infection concerns)

I am not going 'commando' yet and am wearing a wig for the first time, I had it on for total of 7 hours and did not have problems that some people had(feeling itchy.. hot ) although I was extremely relieved when I got home and took it off.

Although it is the 5th day of the 2nd chemo I was not totally over the chemo effects and I think I overdid it again. By leaving the house at 9 am (I am on a mission to find new tableware) coming back at 4:30, I was totally wiped out and fell asleep in front of the tv and slept like a baby throughout the night.

The nausae is continuing but I am showing an effort to get good calories and especially protein in.

Ferit asked whether Feta cheese bills would be considered as a reimbursable medical expense ;o) since I literally have been living on it post-chemo.

Ok the buzz !

OMG did not realize how comfy and cool is 'da bald' and thank you mom ! I do have a nice scalp !

Ferit did an awesome job of 'da buzz' !

Do not know whether I will go commando since I invested a lot in wigs and headcovers but might pull a 'hot topic day' or Britney spears day ;o) since it is so airy.

Couple of post-chemo dull days

It feels like the chemo takes my 'edges' off. I feel and act kind of dull.
I also have the cold like symptoms ( congestion ) which is one of the side effects of the chemo agent. Nausea has not tapered yet although it is the 4th day.

I was actually toying with the idea of doing the Breast Cancer Awareness ride on Saturday morning but Saturday when I got up I was not feeling that well. Unfortunately all the events that I would like to go to happen to be on my chemo weekends arghh...

Saturdays highlight was a free facial that was offered by Face Logic Oviedo to Breast Cancer Patients and Survivors, it was really a treat I wish it was not 2 days after my treatment so I could have enjoyed it more. It was not like the usual complimentary spa offerings where they pamper for 15 minutes then you have to listen to sales spiel for the remaining 45. There was absolutely no sales pitch and a full hour of facial,face-arm shoulder-nect massage. And my complexion really looks better ( and if they can make a chemo skin look good and not get irritated I would say their products are pretty good )

The hair fall is getting to the point that I will need to buzz it off very soon no point in holding on.

I have a lot of cute headcovers and 2 wigs, will start making use of them. I also have the Look Good Feel Better appointment tomorrow that is an offering made by the American Cancer Society on Monday. Perfect timing I say.

Trina one of the Bobbies kindly shared the following with me, and I do agree with her it certainly sounds heavenly !

A reflection from an individual that rode cross country as a fundraiser and awareness experience.


I achieved the nirvana I was hoping for on a stretch of highway between Gordon and Valentine Nebraska : Picture gentle rolling hills stretching into the horizon under an infinite blue sky with only a hint of clouds. Crickets, grasshoppers, or locusts are chirping in unison all around you, and occasionally jump from the grass and bounce off your leg. The occasional cow ponders you suspiciously as you enter its territory. The feeling out there is remarkable – remote and serene, yet the road beneath you is a safety tether to civilization somewhere. With heart thumping, lungs expanding, and legs pounding like pistons, your bike moves effortlessly up and down as you weave through the rolling hills. With the wind whipping all around you, it’s hard to imagine that there is a care in the world, or that there ever will be…..

Research published by New England Journal Of Medicine

HER2 and Response to Paclitaxel in Node-Positive Breast Cancer



Result:
Patients with a HER2-positive breast cancer benefited from paclitaxel,
regardless of estrogen-receptor status, but paclitaxel did not benefit patients
with HER2-negative, estrogen-receptor–positive cancers.

I am HER2-negative, estrogen-receptor–positive..

The only difference in the test cases are that I am getting Dose Dense ( instead of traditional. every 3 weeks ).

I have 1 month to research on this to see whether I still want to continue with Taxol after my AC finishes.

Much better this time

Although I did have substantial nausea last night I was able to sleep and did not purge so this time we seem to have gotten it right.

So my new regimen seems to work which consists of :

- Aloxi with infusion
- Steroid amount doubled while getting the infusion.
- Taking Emend for 3 days.
- Taking Compazine every 8 hours for 3 days.
- Over the counter Zantac twice daily.
- Ativan before going to sleep for 2 days ( was warned that this could be addictive so will use sparingly)

Oh and I also have to add that I chomped down a whole bag of Corn Chips that Ferit got me during treatment, I suddenly had a craving for chips luckily he was able to find a vending machine.

But one thing that really helped that I was not able sit down and listen to my nausea Elif had 2 of her friends sleeping over. They made their custom homecoming day t-shirts and they tried to get their hair in a mohawk for the homecoming game. Well first they tried putting on Elmors glue that did not go quite well so we went to Wallgreens begged them to open up ( they had just closed) and bought 5 jars of #10 hair jell. Came home and tried to set it with hair dryer... nada.. it just was not happening there was gel all over the place (luckily we were on the driveway) We gave up and went to bed at 1 am, I think I of them slept in the gel.. dunno how that turned out.

Pictures are worth a thousand words :

Teenagers on a good mission in a good mood are even more fun to swatch then a kitten playing with a yarn... they could get hilarious !

2 chemos done 6 more to go !

Well I got my 2nd chemo today, they gave me an additional medicine ( Emend)for the nausea ( which is about 100/per pill and I am taking it for 3 days luckily my insurance covers it ) this usually stops any nausea immediately I was told. Plus they doubled the steroids that they gave with the infusion.

Our cute doc did the juggling trick again and one of the gals was telling a joke. The goal is being able to juggle until the joke finishes. First he started juggling 3 plastic cows then went back to regular balls. Time passes pretty quick there with Ferit and watching whats going on.

I got all clear for working out from my oncologist and plastic surgeon. The plastic surgeon just wants me to refrain from major upper body movements involving the pecks(like bench presses, pushups- golf is ok) . Oncologist said that I should do whatever I felt like doing and there was no limits.

Have an appointment with a Physical Therapist to asess me and work on any shoulder, chest weaknesses/flexibility issues that are due to the surgery.

The Plastic surgeon still did not inflate me ( the incision sites are still red), and I started losing my hair... joy ! Bald and flat .. hmmm.. will look like one of those aliens in the cartoons, especially when the 'red devil' chemo agent turns my skin greenish the second day of treatment.

Today a research had been published about Taxol the second chemo agent I am scheduled to get end of November..

"The widely used chemotherapy drug Taxol does not work for the most common form of breast cancer and helps far fewer patients than has been believed, surprising new research suggests.

If further study bears this out, more than 20,000 women each year in the United States alone might be spared the side effects of this drug or similar ones without significantly raising the risk their cancer will return. That would be roughly half of all breast cancer patients who get chemo now."

Well I happen to be in the category who will not benefit from this chemo agent.
My oncologist said that the research was conducted by a very reputable person and should be trusted, this study was done on traditional ( not dose dense like I am getting ) chemo, however he said that he thought that the results would probably be same for dose dense patients too.

Ohh.. and we brought up the issue of radiation or further surgery.

He is definitely against radiation, and said that I might want to consider removing additional lymph nodes after chemo if I choose to do so but he really did not think that is really mandatory either.

Hmm.. so maybe I can get away with no additional surgery, no radiation and maybe not get the taxol treatment ? That would free me mid-november. But my hunch is that I will go ahead with the taxol and not risk anything...

Geeshh I thought that I was done with the decision making, here we go again !

Backing off activities a bit

It is 2 days before my second chemo session I feel totally recovered except for a slight glitch in my sternum.

I guess I overdid my activities, and started having some pain in my lower sternum which I initially had after the surgery but had went away 2 weeks ago. I think the golf swing might have done it or the jog/walk.
My friend Mary Ann helped me come to my senses by sending me a serious email on not jeopardizing my health by exerting myself needlessly at this stage of my treatment. Will take it easier from now on.

Today I went to the 5:45 am spin class and cranked up the intensity(the resistance) a bit controlling the heart rate with my new cute Heart Rate Monitor and felt extremely good. Came home and took an hour nap (this is my new routine, workout - eat - take a nap)

Stats from my spin class:

Time: 46 minutes
Average Heart Rate: 135 ( 77% of max)
Maximum Heart Rate: 159 ( 90% of max)
Calories: 345
In Zone (127-143) time: 22 minutes - I will focus on staying more in the zone.

At lunch met with my friend K at the mall and had a delicious Pizza while we caught up on stuff. Afterwards did some shopping at the mall. Baked some chocolate chip cookies as my friend Seda and her daughter dropped by for tea. I am kind of getting used to the 'Stay at home mom with grown up kids' although I do not think that I can do this for very long.

Yesterday I received 2 large gift bags from my friend Deb at work ( we have the same birthdays so I call her my twin ;o) ). It was such a nice surprise and really brightened my day.

In the bags there were a bunch of running/cyling magazines, an book with inspirational poems, novels, sudoku books, a notebook, matching notepads.... But that was not all.

There was a bag with 40 little rolls, labeled 'Daily Inspiration' "Grab a thought"



I do not know how long it took her to put this together considering the fact that she also does have her hands full with 2 wonderful little munchkins H and V but it was an amazing idea, I will have fun with it !

Started hydrating for the chemo tonight need to go into it fully prepared.

Starting jog/walking & went to the golf range

Activities:

Sunday:

2 hours at the golf range, it is definitely a very meditative activity ( can not think of anything else), I thought we were there for about an hour and then realized that I had been trying to whack the ball off the ground towards the flag for close to 2 hours.
No wonder Ferit was checking out with the pro about lessons, he surely is very patient but I am seriously doubting my golf ability, losing the T, or slamming it into the ground.. sometimes breaking it.

If you look at my picture I look more like dusting a rug with a racket, rather than driving a golf ball.




Surprisingly I was wiped out after this.. yes.. and took a 2 hour nap afterwards.

Monday:

I decided to give the jog/walk a try. Did 2 minute jog at 12 min/mile and 1 minute walk at 2.8 mph.Watching 'Tim the Toolman' made time pass quickly, there was barely anyone at the gym at 12 pm.

Here are my stats.

Distance: 3 miles on the dreadmill with 1% incline.
Time: about 43 minutes
Calories: 372
Heart rate average :155
Heart Rate maximum: 175

The heart rate was pretty high but my legs felt really good ( naturally from a major taper since end of August) I am hoping that I will eventually be able to bring the heart rate down to a reasonable number.

Had to take a 1+ hour nap again later, I think I am kind of getting the hang of what my body needs while undergoing treatment.

This Thursday is my next chemo session lets see how I will react this time.

Today I also realized that when managing my 'unwanted hair' the roots were kind of sluggish, guess the mohawk cut that my daughter is looking forward to is coming near. I am expecting it by this weekend.

Other stuff:


Other than that I am gravitating towards the kitchen in my spare time, I am not sure this is such a great idea since the last time I was this involved in baking was 10 years ago and I was about 40 pounds heavier. But my deserts are just 'scrumptious' !!! ;o) Today I am trying out a new marble cake recipe. Yesterday I had baked a strawberry cream tart which was sinful but delicious which we took to my sisinlaw where we had an excellent dinner (as usual !)

Training plan for the Breast Cancer Half Marathon

Here is a draft of my training plan to walk / maybe jog/walk the breast cancer half marathon that I have registered for in Jacksonville in February.

Every week I will do 2 X 3 mile walk and in addition to these I have scheduled a long jg/walk working up to the distance so the plan is to do walk/jog total of 3 times a week. I do not need to complete a 13.1 mile to prepare for a half marathon my longest walk/jog will be 10 miles.

Long walk/jog will be on the Monday,Tuesday or wednesday of my chemo weeks ( I get mine on Thursdays, that way I will be at my peak of my treatment cycle for these workouts)

Week Start Date Length of long jog and/or walk

08-Oct-07 Chemo on thurs 4
15-Oct-07 4
22-Oct-07 Chemo on thurs 5
29-Oct-07 4
05-Nov-07 Chemo on thurs 6
12-Nov-07 4
19-Nov-07 Chemo on thurs 4
26-Nov-07 4
03-Dec-07 Chemo on thurs 6
10-Dec-07 4
17-Dec-07 Chemo on thurs 7
24-Dec-07 4
31-Dec-07 Chemo on thurs 8
07-Jan-08 4
14-Jan-08 9
21-Jan-08 4
28-Jan-08 10
04-Feb-08 4
11-Feb-08 Event on Saturday

Presently I did a 3 mile walk at 3.2 miles per hour speed on the treadmill with 1% incline.

Feeling almost normal again 8 days after my 1st treatment

Activities:



Friday :



3 mile walk on the dreadmill, average heart rate 125 at 3.2 mph speed. Can not wait until the Plastic Surgeon gives me the go ahead to start jogging. Luckily this gym has tv's on each treadmill ( thats why I got the membership) so I get to catch up with whats going on.



Afterwards came home and took a 2 hour nap.



Saturday:

40 minute RPM ( spinning class at the gym) kept the RPE ( Perceived exertion level ) 5/10, Heart rate less than 140

Was not able to put on much resistance and mainly did high cadence spinning. Felt awesome after the ride although I did not even break a sweat. During the ride I was imagining that as my heart rate increases any stray cancer cells are exposed ( they stay black whereas the good cells start glowing with endorphins) and my immune system was sweeping them away.

I am feeling better with each passing day the throat is a lot better although I still have difficulty swallowing solid stuff. I do not have the metallic taste that everyone had warned me about having when going thrugh chemo and my appetite is back( at least as of now). I do not have fatigue that affects my daily activities but I do not think I can go and ride my bike for 2+ hours either. Well I can live with this for 4 months.

Friday night Went out to dinner to Red Lobster, forgot my throat and ordered a spicy dish.. yikes.. Ferit had to switch his entree with mine.

Sibel and 4 of her friends from UF came over and we watched the movie 'Troy' together. It is so uplifting/fun to hang out with 17 year olds ( ONLY when they are in a good mood ). I had made 'Better than Sex Chocolate cake' - weightwatchers recipe ) luckily they wiped it out pretty good before I had a chance to inhale all of it.

My father who is visiting ran into his room scared from the overdose of estrogen of 8 gals ( me + Elif and her friend + Sibel and her friends ) Ferit as usualy braved us all and hung out.

Saturday night was a different version of Friday.After seeing the movie 'Game Plan' went to Applebees for dinner had a really nice steak I have been craving red meat lately. Then came home to the same group of gals watching the UF and LSU game .. had to run outside to the patio they were a bit loud even for my taste. My father hid in his room again. lol...

I am playing 'Monk' at the restaurants, cleaning the table with Antibacterial wipes, wiping the silverware with the wipes and constantly putting on hand sanitizer. I must look pretty weird, but better safe than sorry.

A very sad day

This is a roller coaster ride indeed, having a support group and connecting with other BC patients has immense benefits, however this also makes one exposed to very unfortunate events.

One of the girls from the breast cancer internet forum passed away due to complications from chemo. She was 34 years old had to little kids ( 2 and 3 years old), had gotten her 2nd chemo and got exposed to a virus and came down with pneumonia her immune system was challenged from the chemo and her family lost her within 2 weeks. This came as a shock to all of the forum members.

Here is a link to her posting on utube getting her first chemo, ( it is very sad, you might not want to watch it ) her spirits were so high !

http://www.youtube.com/watch?v=cdMbrGMTF-o

although probably none of you know here here is her online obituary link in case you want to light a candle:

http://www.normandean.com/?p=obituary_view&id=45280



They have to find a better way to cure this shit other than breaking down all parts of ones body.

Paid dearly for a binge

By Wednesday I was feeling really good ( if not 100% back to normal) around 5 pm I went through a lot of comfort food, literally stuffing them down my throad happy that I was able to consume large amounts of food again ( a sign that I have somewhat recovered from the toxins of the chemo) At night we ordered Pizza and I ate some of that too, afterwards I got the feeling 'something is stuck in your throat but actually nothing is there- or - I just ate a potato which decided to hold on to my throat fighting not to go down ' which just did not go away and got worse and started hurting.

I am not sure what irritated my throat(while eating pizza I do recall something cracking in my mouth) but I guess from now on I have to be careful about chewing foods thoroughly before inhaling them whole like my irondawg Candy as the chemo meds are supposed to impact my stomach, mouth and digestive track making it vulnerable.

All day long I was only able to eat soft foods and liquids.

Sleep is still not settled I was on an online chatroom until 4 with other bc gals who are sleep challenged as well.

My oncologist is my home boy

Hehe.. thats a pin that one of the patients of my oncologist has -- I was told, found it was pretty accurate since he will be controlling my life at least for the next 4 months.

I went to a chemo training class at the office tuesday evening and gathered some information from the nurse who did the presentation regarding the different oncologists and their treatment styles.


So I am getting to know Dr. Molthrop and his treatment style now.

No vitamins no complimentary medicine.. Actually no medicine other than the chemo unless I really prove that I need it. ( other oncologists prescribe and instruct their patients to take the antinausea medications proactively even if they do not feel nauseaus, I think he is trying to limit the meds given which I can understand.. but in my case they ARE necessary)

His point is simple regarding vitamins/supplements. " Cancer cells are your cells, if you take antioxidants and other boosters they will boost the cancer cells also not only your good/healthy cells, we are trying to kill the c cells with the chemo"


So all I can do is to rest, and eat sensibly not piling on junk calories and maintain my current weight. I am really being thankful that I did all my long distance endurance training, the discipline for it is basically the same.

First spinning class

Tuesday:

I attended the spinning class that I used to instruct and had a great time. Since my heart rate monitor did not come yet I really had to listen to my body to make sure that I kept the effort in zone1 very easy, barely breaking a sweat. I think I did a good job of pacing myself no sprinting, no major hills. It was great to see the group again ! I had to wipe the bike with antibacterial wipe, from now on I will be playing 'Monk' I guess.

I might consider wearing a t-shirt saying :

WARNING -- IMMUNE SYSTEM CHALLENGED PLEASE KEEP YOUR DISTANCE.

Because one of my dear friends gave me a huuugggeee hug and a very warm kiss.. could not stop her but got pretty scared.

Wednesday :

Walked on the dreadmill for 3 miles at 1% incline at 20 min/mile pace, and interestingly I felt kind of tired this is really weird. It took FOREVER !


The Plastic Surgeon did not inflate me since the necrosis was still not healed, he cut off some parts to help it heal quicker and gave me another appointment for next tuesday, he said that he wanted to make sure that everything was ok before starting expansion and he was not in a hurry. I tend to agree I am not looking forward to the expansion process and going on for Dolly Parton yet. They can only do the inflation the week that I have the chemo ( before chemo) because that would be the time when my immune system will be at its peak during treatment cycles.

The chemo feeling so far has been similar to a major hangover ( if I can recall what a hangover is from decades ago since I have not been wasted since then ) nagging headache (like a dehydration headache- do not want to go into details but I know very well that I am fully hydrated ;o) ), sinus pressure and queasy stomach just feeling BLAH .. altogether.

I have not been getting adequate protein that is essential for my body to rebuild the healthy good cells destroyed by chemo so bought couple of high protein EAS bars. The meal replacement drinks were another option but even thinking of downing one made me gag.. ewww. I hate those. For 5 days after the chemo I have basically been living on soup, feta cheese, tea and toast, with an occasional craving for corn chips. I do not think I had major fatigue, but the nausea sucked on my energy.


Actually the feeling is exactly the same as the feeling that I had after my Ironmans.

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 !