Those who can truly be accounted brave are those who best know the meaning of what is sweet in
life and what is terrible, and then go out, undeterred, to meet what is to come. - Pericles

Letters


This is the place for you to post a letter with a question, comment or an inspiration for other survivors. If you would like to receive e-mail from other survivors, be sure to include your e-mail address.


I know I am not in your "community" but in the community none the less!! So, I am in need of information on long term tram flap...
I am a six year after bone marrow person... wow. Six years. I am at a point in my life where I am seriously considering the tram flap reconstruction and do not know whether to do this or not. I am very active, run, exercise, hike, and enjoy a very full life. (I ran in the race for the cure, my prosthesis fell out in the middle of the road!!! What a moment... loved the humor of the Powers that Be!!) But started me thinking of reconstruction, at least that way, I wouldn't be losing it. But, though I have it scheduled for for September, I am beginning to rethink this. It is a serious surgery, modifies the muscle base... and on and on.
I would like to hear from others who have had reconstruction, tram flap is the only one they can do for me. How long ago did you have it? What has been your life style?
Thanks for sharing.

Libbie
A-Kerrs Bengals
http://www.akerrsbengals.com
[email protected]

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I just found this site after visiting my dr's office and picking up a copy of MAMM. I was dx'd with Br CA last April when I was 52. I couldn't believe after years of exercising, eating right, taking vitamins, no smoking, no drinking and keeping my weight down that I would have CA. Spent the next several months being angry and wanting to blame someone or something but there was no one to blame.

The dr. wanted to try and shrink the tumor first so I started out with chemo. I elected to have a mediport put in (which I regret now) and expected to wake up a little groggy but able to have my sister drive me home and be OK. Instead, I woke up and nearly jumped off the stretcher because I couldn't breathe. I kept yelling "I can't breathe" and the anesthesiologist came over, listened to my lungs and yelled for the nurse to get a chest tube tray STAT. I knew at that point they had collapsed my lung during the procedure. After they put a chest tube in, 900 cc of blood drained out quite rapidly and I went into shock. My B/P dropped to just 70 and they desperately tried to get a 2nd IV line in. Somehow they did. At this point I was holding on to somebody's hand telling myself I was not going to die. (I'm an RN so I knew how serious this was) Then pumped almost 4,000 cc of fluid into me and then I started to shiver because of all the extra fluid going in so fast. I ended up in ICU for 3 days until they removed the old port, had thoracic come and help put in a new one on the other side of my chest.

I started chemo the day after I got out of the hospital. Went thru 12 weeks of Adriamycin and Cytoxan. Losing my hair was the worst part. Also, had to find the right antiemetic (zofran, anzimet and Kytril didn't help at all) had to go to an old standby - Compazine. I recovered for 5 weeks, then had a lumpectomy and 8 nodes removed, three of which were positive. I had bad pain for 5 weeks, then it disappeared over night. I have full range of motion now. The worst part was the nerve pain damage in my upper arm, but my surgeon gave me Elavil and it worked great, even though it made me so hungry I would get up in the middle of the night and eat a full meal.

I had 30 radiation treatments and was extremely lucky that I didn't burn or get fatigued. Even though the radiation was physically the easiest, it was the worst for me emotionally and psychologically because I felt being tatooed was degrading and it was humiliating for me to lie on the table half naked while technicians walked in and out repositioning me. I felt so violated I cried every day on the way home.

I went back to work after radiation and had 12 more weeks of chemo - Taxol this time. I again lost my hair - what little had grown back. I did notice that during radiation my hair stopped growing. I don't know if others have noticed this.

Also, during 1st chemo I couldn't drink water. The worst side effect from TAxol was the neuopathy in my hands and feet. The hands are fine now, but I have some residual neuopathy (just slightly) in my feet and my oncologist said it may be permanent if it hasn't gone away by now. Other than that, Taxol wasn't bad on me.

It has taken 6 months for my hair to grow about 1 inch. I still am wearing my wig to work. I have decided not to take Tamoxifen right now - I took it for 2 weeks (my tumor was estrogen positive) but I didn't like the increase in the hot flashes and the constant discharge so I stopped. I am researching it and will make a decision in the fall after I have reconstructive surgery next week and after my hair grows back to normal. I wonder if anyone else has questioned taking Tamoxifen. I don't like the serious side effects of endometrial CA, DVT and pulmonary embolism. Also, it doesn't seem to me that it stops enough breast cancer, since a good percentage of the women taking it still have recurrences. I am just not sure and I may have some genetic counselling before I make a final decision. there is a strong history of cancer on both my parents sides. But my dr. says mine was not familial breast ca.

I look forward to joining this group and hope to correspond with others who have experienced this or who may be preparing to go thru it.

Carmen
[email protected]

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e-mail:

Sam Marye Lewis, MA, MFT License #MFC27919
1190 South Bascom Avenue, Ste. 211 San Jose, CA 95128 Tel: 408.271.9005 Fax: 408.271.9006