Saturday, July 16, 2011

Chemo, the day after hangover.

You may be wondering as you start your journey down any road of chemo.  Well, If you have ever been a naughty youngster who imbibed in a night of overzealous drinking, then you will know what a horrible hangover feels like.  If you have  never had the horror of this experience, then think of what it feels like when you have the onset of the flu. 

Here is how it goes down:
You are achy, tired, nauseous.  There is not a position to be found that you are comfortable in.  Your internal temperature may be off.  At one moment you feel hot and the next you're cold.  Okay, it sounds bad.  It really isn't awful.  Since you are tired and have no energy your family and friends will be really helpful to you at this time.  My wonderful hubby, son and daughter take great care of me. For this I am expressly grateful. 

Day three tends to be my worst day, and then after that I start feel a bit more zippy.  Despite my tiredness I try to make myself do my normal chores so that I continue to feel productive.  Today I have folded clothes, emptied trash cans, and emptied the dishwasher with a lot of help from my peeps.

Let me leave you with this word of hope.  There are brighter days ahead.  When you look back on the days you thought were dark, time will show you that there were rays of light there all along

Friday, July 15, 2011

Looking at life through a pink ribbon haze

The following is not opinion these are fact that I state sources for. So, in advance of reading this article I ask that if you get angry, don't direct it at me. While I state that I am saddened by this information, I didn't come up with it out of the top of my head. You can google it yourself and come up with the same information that I have found or just visit the source that I site.

Thank you,

Leslie

Just the facts on breast cancer's pink initiative. Don't get me wrong, I think breast cancer awareness is a wonderful thing. It has been a terrific boon for the drug companies. Does that comment seem strange to you? Let me clue you in to some irrefutable facts.



Fact one: there isn't any place on this planet that a person wouldn't recognize a pink ribbon as the symbol for breast cancer. ( info from Susan G. Koman wikipedia page that states: Today, Susan G. Komen for the Cure is active in over 50 countries with its largest affiliates in Italy and Germany.)



Fact two: Out of all the money raised in the walk for the cure, race for the cure and other such events, as quoted in a New York times article January 7, 2011, "only 1% of the $5 billion annual cancer fund was devoted to any stage IV (metastatic) cancer, despite the fact that stage IV causes 90% of cancer deaths."



Before adding more facts I just want to go on record as saying that I think this is really sad. Let me educate you. There is a big difference between having localized breast cancer, having it removed and then receiving either chemo alone or with radiation, and a woman or man having metastatic breast cancer. The woman or man with localized cancer will be pronounce cured at the end of their treatment. The patient with metastatic breast cancer is told as I was that you will be on one form or another of chemo for the rest of you life, and most likely this will be what you die from.



Fact three: Just in the USA 155,000 patients a yr are diagnosed with metastatic breast cancer. 90% of the people who die from breast cancer are metastatic patients. Again only 1% is used to research this killer disease. ( info from American cancer society)



Fact four: All the money raised for research does not go to research. All those little goodies you get for "free" when you participate in an event that is to raise money for research are actually paid for out of what the event raises. Not to mention the overhead that comes right off the top before any of the money is actually given to researchers. By overhead I mean media (print ads, commercials and awareness information, and literature, magazine ads) Not all of the people who work a fund raising event are volunteers. Some of them are paid staff and are paid out of the funds raised. Where else do you think the money comes from? My source for this information is the Mets matters blog, The cancer chronicles, I hate cancer, and breast cancer news.



Fact five: 45,000 women with mets breast die from it yearly. The majority of patients with localized cancer (just in the breast) have treatment and considered cured at the 5 year mark with no reappearance. S.H.E.circle.org states that survival rate at the 5 year mark of women with localized breast cancer is 97%. 178,480 are diagnosed each year with localized breast cancer.Try as I might I could find no figures on the rate of death in patients with just localized breast cancer. By my math that means that 5354.4 women with localized breast cancer die yearly in America. I did find an obscure article from 1999 that states women who die of localized breast cancer usually die as a result of secondary infection post surgery or die from surgical complications. ( info comes from the American breast cancer society, wikipedia, answers.com)



You may be reading this and think "Gosh she sounds angry" I am not angry at all. I have what I have and I deal with it daily. It is just a part of life now. Most people don't know what will probably take their life. Unless I get hit by a bus, this is probably it. If I am angry about anything it is that we are lumped in the pink ribbon contingent. I don't see myself that way knowing how little is spent to find a cure for me. I am definitely not a part of the pink army. But while I did have localized breast cancer and didn't know all the facts, I was blissfully unaware and drowning in a haze of pink.



Let me leave you with this. I am blessed beyond measure with supportive family and friends. I am blessed to have a situation like this show me who my real friends are and the ones who are just there during the good times. I am blessed to live in a free country. I am blessed to have a relationship with Jesus Christ my savior. I thank God for my life, and I thank God for YOU!

Thursday, July 14, 2011

The count down begins.

It seems that I am always counting down to something these days.  Counting down to the time to take day before steroids for chemo.  Counting down to chemo,  or the week I get to see the doctor.  My husband travels sometimes, so I find myself counting down to his return on occasion.  Today I am counting down till it is time to take my steroids.  Then I will start thinking about chemo tomorrow morning.  In between the counting of time I do live a life. 

My life today has been all about spending time with my daughter.  Spending time with each of my children and my husband has become very important to me since my diagnosis.  Every moment feels so important.  Even the most simple.  Today we enjoyed a sandwich for lunch at McCalisters.  We got to talk and laugh.  We both really enjoyed getting away from the house, but still being in air conditioning.  It is over 100 degrees today in Texas.  Truly the dog days of Summer.

As I mentioned, tomorrow is chemo.  We two of my three weeks on and one week off.  I take Taxol/Avastin on weeks one and three and just Taxol on week two.  This is my third month  What have I noticed so far?  Well I lost my hair, I still have to watch my weight, and I am tired all the time.  Yesterday I noticed that I am losing my eyelashes.  Fun times!  These things are all inconvenient.  They can be fixed.  I wear a wig or a hat to cover my hair loss.  I can continue my vegetarian lifestyle to control my weight.  As for eyelashes, they make some that are specifically for cancer patients.  The glue holds them on for several days and is gently on the sensitive skin of the cancer patient.  Problems solved.  All except for the fatigue.  I don't know how to deal with that one yet other than to drink lots of water and try to rest during the day.

Well People, I am off to do just that.  Rest. 

Wednesday, July 13, 2011

Please, feel free to invade my space

Okay, The title is sarcastic to say the least.  As you get to know me you will find that I have an edge to the way I think.  So okay, You've heard the story of how a person will rub the tummy of someone who is chubby and ask when their due date is?  Only to find out that that aren't pregnant?  Well this is sort of like that.

On the 10 year mark of being cancer free from Breast cancer, I found out that I have metastatic breast cancer.  It is in the lungs, chest wall, arm bone on the right side, and my pelvic bones.  Since that time I have discovered that my body is not my own.  It is open to being pinched, poked, prodded and probed.  I get stuck by needles every week.  This is all so much fun and it is something I am growing used to.  What happened yesterday came as a surprise. 

Here is how it all went down:

My daughter and I were out for a quick lunch and a movie.  While standing in line to pay, a complete stranger rushed up behind me and says in a loud voice, "Do you have cancer?"  I think she had observed the clue that I had no hair on my head and a cap that barely covered my baldness.  So I said "yes"  Then she said "They are coming up with so many cures for that now"  To which I said "there is no cure for metastatic breast cancer"  But she didn't want to hear what I had to say.  She just wanted to purge her belief in a cure all over me and then bounce on her merry way.  I was sort of shocked.  Her whole objective had been to find out if I had cancer and then encourage me into believing I would be cured.  More for her sake than mine, I said "thanks for the encouragement"  as I passed her table.

I believe that as the signs of my cancer become more apparent physically, more folks will take it upon themselves to tell me publicly that I will be cured, or what treatments I should be on.  I already had someone tell me that there is a miracle worker in Mexico.  Wow!  that is awesome that someone has cured cancer.  Bummer that they've received zero recognition for it though.

So, Tell me if anything like this has happened to you.

Leslie

Trodelvy trial failed.