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 !