Please Help Give Me confidence

It just takes time, and the perspective of others, to get your head around it all and get your own perspective on it all.  Cut yourself some slack, but then get to the point where you don't let your worries rob you of life.

I wallowed, (it's a normal stage), then was mad for missing  out on so much of life.  4 years later, I'm still here and not worried about my demise. (gave up most worries after about 9 months, then only fleeting worries during check-ups).  No sense in worrying about what might be.

Yesterday is history.  Tomorrow is a mystery. That's why today is the present--enjoy the gift and try to focus on what is.

(You can slap me if you want, but I got a lot of help from women ahead of me who surprised me into the next phase, even when I thought they had a lot of nerve expressing their viewpoint to me when I was so low.)

 Great advice from Beesie and baywathcer.

Take care,

--Hattie 

Hi Deb-

Yes, living in Key West is great but cancer screws with your mind no matter where you live. You are right about me getting cancer in the other breast four years later. I am convinced that the cancer that I had was caused by numerous mammograms (I was trying to count them and I have had well over 50 films over the years).  

If I could do it all over, I wouldn't have mammograms. If I was concerned, I would have a thermogram instead. I believe that the radiation from mammograms is harmful. I also think it is  bad to squish your breast so hard which is what they do when you have mammograms.

I think you are depressed. I suffer from depression too. Cancer does this crap to us. But if we let it put a timer on our lives, it has won. Don't let it win. Do your best to kick it to the curb.

Good luck to you

deb,

I think you are being too hard on yourself--you are still IN this... waiting to have your next surgery--all that you are feeling seems to me to be very normal.  I would echo what everyone else here said--last Christmas I was recovering from a lumpectomy and waiting to hear about my oncotype score so I could make a decision about chemo..... and I can tell you, now, a year later, I don't spend too much time in any one day thinking about breast cancer.  I had it, they took it out, we treated for the just in case, and I am moving on.  I think that takes time--- and I wonder if maybe talking to someone like a counselor or therapist could help you. I did that all through the process and I really believe it helped me immensely.  I still go once a month--- just really helped me center my thinking.  

I have read from some who have had a recurrence (which is really rare you know) that their one regret is that they worried so much in between.  they wished they had enjoyed life more.  And remember also, a recurrence can also be dealt with--- so assume you are going to live until 90 no matter what health issues you might face..... but most of all, be kind to yourself- I am living my life as if it will never come back, and on most days, like I never had it at all......

be well

Dear Deb

You want to hear from somone who has been down the road...alrighty then...I feel I can say that know exactly what you are feeling.  Take heart darlin...having had the same exact thoughts you are having now, I am writing to let you know that I am now out 22 years - stage 3 1987.  36 then, 58 today.   Doctors told me then, to begin getting my affairs in order..that if I made it 5 years, I would be lucky. Today, I dont even remember my diagnosis...idic..invasive ductal something or other .    

My baby, now 22 was only 2 weeks old when i was diagnosed.  Joined support groups back then only to hear weekly that this one or that one died. And yes, some I did make friends with died.  I used to pray, that if God would allow me to see his first baseball game I would be greatful.  And yes, every ache and pain can play out one new horror movie afer another in the theatre of your mind.  I remember, once insisting that an xray be taken of my foot... so scared and sure was I that it had spread and that I now had breast cancer in my foot.  Well, as it turned out..my fears were preposterous as all scan had previously confirmed week earlier that i had no mets.  

I am here, on this Forum today, as I am considering reconstruction.  Imagine, after 22 years, I can still, not make up my mind?    My story, experienes, brawls with doctors (yes, there were a few who apparently thought they knew more than God, I told to go find a bridge to jump from)   learnings of alternative choices, etc has been as long as my journey since that first day of diagnosis 22 years ago. That is exactly what life is about.  I spent the first 5 years learning, reconciling, how to come to terms with death..gracefully, and as a result, began learning day by day how to learn to REALLY live. Next thing i knew, there  I was watching my sons first baseball game.

So, I would say to you, choose to Live. Find music to cheer you and bring peace to your Soul.  Dream of the future. Go out and look at the moon, smell the sweetness of the air.  Sit in the sun for a bit each day.  Think of life..and so you will become life.  And if it has been your custom and past pleasure to enjoy the holidays...continue to do so, is my best advice to you.  You will get through this and before you know it...the monsters you fear now will become a fading memory. Write your own Gospel, plant your own garden?.  

  A great book that helped me back then was Love, Medicine and Miracles. You library will probably have it..Dr. Bernie Segal.  And no, it was my choice way back then not to take tomaxafin.

Hi Deb,

I was enrolled in a clinical trial, a study -at National Institutes of Health. Treatment plan was for one year of intensive chemo 2x a month.  Initially, I would  fly to MD day b4, take treatment, go to hotel , be sick and fly back next morning .  About 3 months into treatment, decided to fly in at 6am am take treatment and fly home same day.  Med protocol was Adriamycin (had life dose) Cytoxin and Methotrexate. Massive doses.  Interesting enough, you are correct in that treatment has made advances since my diagnosis.  Treatment consisted of basically, 1 cycle that destroys immune system so cancer cells could be accessed by drugs, second cycle was methotrexate which would stop the destruction.  They were 2 wks apart. 

When I was first diagnosed, it was customary to perform surgery up front, immediately upon diagnosis.  And this was done for me, but as luck would have it...my surgery was suddenly postponed, delayed for 2 weeks.  During that 2 weeks, for sure, I sat in anguish about the delay.

One day while sitting in the backyard with my newborn..something in the grass nearby caught my eye and I became fixated...on, of all things, a fire ant nest.   As I sat watching the mound of  ants, I began to think of their nest as the tumor in my breast. How would I, how did I get rid of red ants?  Well, for certain, I didnt go about poking the nest with a stick, I got chemicals and would encircle, encapsulate from the outside..to contain the little critters and work towards the center.  Eureka! A common sense plan began to develop that I could associate with as practical.

I called my oncologists who scheduled my surgery and set an appt for a conference.  Made what I believed to be a logical argument as to why I should have chemo up front.  I asked that while I was waiting for the surgery, they begin chemo, immediately.  Well. natch, they stared at me with these blank faces as If i were a two headed commodo dragon and plainly stated, with these amazed looks on their faces that this is just not done, impossible, it is not acceptable medical practices  - and this was from oncologists at one of the most prestigious medical centers in Fl.     Well, this was just not acceptable to me as I was not going to just sit around for 2 weeks.  I harassed, harangued, insisted, they find something, somewhere, had them search their national data bases for something somewhere, anywhere, in the country.  Two days later I got a call from a plastic surgeon who said, he heard about the ruckus I was causing at the University and asked that I come to his office for a consult. HE had found something, it was faxed to him, a study at NIH and believed me to be an acceptable candidate.    Local oncologists upon hearing of my decision to go to NIH explained that the doses of drugs would be so  intolerable, strong as to incapacitate a horse and advised that I reconsider the surgery. Nope, all I could see in my mind was the red ant nest..them poking it with a stick, the ants loose, free to escape in all directions.  I wanted to hear both sides of the prognosis and more about the new study. Was on the plane next day to Bethesda post haste to hear what they had to say.

Fast forward 6 months into treatment.  I call the local oncologists and spoke with sugeon who had initially scheduled mastectomey  to inform him of my progress, and that I was doing well, tolerating drugs, etc. Know what his response was?

Oh, great news, glad to hear you are doing well. We now have accepted and incorporated chemo up front protocol into our practices for women who present as you did.  And so began my journey of self responsibility, questioning every and all treatments, taking part in choices that would affect my life and well being.

NIH? (National Institute of Health) after one yr...booted me from the study as an uncooperative patient...because..I wanted 2 more cycles of chemo beyond what their evaluation recommended.

After picking up my records and reading their notes, I was quite amused to read the psychiatric recommendations they were making that I didn't know about....ie. ."Patient is disrupting other patients during treatment by asking too many detailed questions regarding her RX doses, side affects, etc"  "Patient is anxious" "Other patients are starting to ask same questions about their treatment and are  taking  time away from attending nurses schedules;. "Patient is refusing steroids!" ' Patient arrives too early for treatment eager to catch plane home same day; 

Sisters,

Worry and Fear are NEGATIVE charged emotions.  Decide what messages you want to send to your body to assist in the healing and it will respond.  Negative emotions are counter productive to your already distressed physiological well being and physically taxed immune system.  When you take your chemo..imagine it as a glowing, nourishing elixer flowing through your veins, seeking out the pesky invaders.  Smart bombs.

Pure. I don't even take an aspirin unless its a bomb of a headache.  I have taken no cancer drugs, or any other drugs for that matter,  since my last chemo treatment 22 yrs ago.  Occasionally, I have taken an antibiotic over the years but could probably be counted on one hand. I take no mamograms or bone scans either since BC treatment ended.  Its funny, when I go for a pap smear...doctors are shocked that I do not return every year...in fear or worry. 

It is my understanding of Methotrexate that it is basically a B Vitamin derivative. It was used in the study, primarily, to cease the chemo drug cell destruction.  

I am a big proponent of holistic medicine.