My faithful watch dog

Hidden Message?

Hey Everybody

 A couple months ago - my watch dog was barking, her someone is here bark, I looked out and noticed that there was a pink semi parked next door. Than Someone knocked on my back door, disregarding Sugar's attempt to protect me.  A gray haired and bearded man had stopped by for a visit. He said you want to get rid of the VW car in the driveway? My response was no  I am saving it for my Grandson. He sort of wanted to make his point. You called me and said you wanted $150  for it and I am here to pick it up. My comment,  I did not call you, he said well someone did how else would I know you had the car.... I suggested maybe a prank call other wise I have no idea and if I was going to sell it would be for a lot more that $150 - the car is in good shape! He stood there for a few moments and looked at me and my bald head. Than he left.
 After a few days I realized I knew him. His name was Ken Kallmeyer. I knew him  from 30 years  ago. I worked at the bank in the collection department, which involved repoing cars. (long before the show repo man) Ken had a  towing business and we used him to pickup cars. Hmmm strange.
I was a bit concerned about this guy coming to my door with this made up story. A good reason to keep the doors locked.  However  I got over it. Out of site out of mind.

Now days we do not always see the obituaries, or at least I don't as I get all  my news on line. We get a little local paper "Kenton County Recorder". I happened to notice Ken's name - he had died. I had the strangest feeling when I saw this .  He was 71.  His wife had died previously and  the family requested donations to the The Susan G. Komen for the Cure, Breast Cancer Foundation, often referred to as simply Komen, which is the most widely known cancer foundation.
I think this explains why Ken had a pink semi truck, his wife died of breast cancer. Why did he wind up at my backdoor - I am not sure. I feel there was a hidden message, guess I will never know exactly. I think he wanted me to keep fighting not just for myself but also for others.. A great guy  and he drove around in a pink semi! Rest in peace Ken:)
 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Here is my health update. I feel great!. Last week I had one of those dreaded colonscopys. I had to cross my fingers and hope for the best - that worked everything was good. So I am good for another  five years. A very good thing. I still see my oncologist Dr Bandari every three months. I had a blood test yesterday. I meet with Dr Bandari  on the 17th. I see Dr. Michael Guenther (my surgical oncologist) ever six months. I have been taking the drug tamoxifen , I do know that there has been a recent study showing that there is another drug that is more effect that I will be taking soon. ( at blocking cancer cells) with post menopausal woman at high risk for reoccurrence. So everything is in control!   I am postive  life is good:) Peter and I are good. I am beating the crap out of this cancer!!!



 

World Cancer Day

Begin forwarded message:

From: ELIZABETH PEEPLES <peeples_e@bellsouth.net>
Date: October 23, 2012 12:52:05 PM EDT
To: Susan Griffin <sgriffin@att.net>
Subject: Fw: Fwd: Fw: A small request and  it's just one line. Gayle

Monday is world cancer day...I'd appreciate it

if you would forward this request.
A small request and it's just one line. Gayle


Dear God, I pray for a
cure for

cancer.. Amen

From: ELIZABETH PEEPLES <peeples_e@bellsouth.net>
Date: October 23, 2012 12:52:05 PM EDT
To: Susan Griffin <sgriffin@att.net>
Subject: Fw: Fwd: Fw: A small request and  it's just one line. Gayle

Dear Susan, This is from my first cousin who is now in remission from breast cancer and I do want to keep it going and maybe you have the address of one of our beloved DAR's who have beaten this.

 

Monday is world cancer day...I'd appreciate it

if you would forward this request.
A small request and it's just one line. Gayle


Dear God, I pray for a
cure for cancer.. Amen

All you are asked to do is keep this circulating, even

if only to one more person. In memory of anyone you

know who has been struck by cancer or is still living with it.

A Candle Loses Nothing by Lighting Another Candle..
Please Keep
This Candle
Going..

 

,

All you are asked to do is keep this circulating, even

if only to one more person. In memory of anyone you

know who has been struck by cancer or is still living with it.

A Candle Loses Nothing by Lighting Another Candle..
Please
This Candle
Going..

 

,

Stages of Breast Cancer, Tai Chi and those darn leaves.

Happy Friday Everyone, The sun is shining on the green hills of Kentucky. The trees are turning wonderful shades of orange, red and gold. Those  lost leaves will soon create a carpet, first in our front yard, once we get all of those leaves raked the two very large/ old oak trees will loose their treasured leaves.  (as Peter would say "sigh") Those beautiful shade trees  will leave several hours of work for Peter!

As I travel my recovery path - I am returning to Tai Chi ( my original plan was to do this  2 weeks after my mastectomys) Well, that just did not happen!  Now eight months later I am focusing on Tai Chi. This is a great video, Tia Chi  brings wonderful energy to you - something you can actrually  feel as you say good bye to negative feelings, thoughts and such.

 I am knitting a new pair of socks and my hair is still growing.  I feel good:)
Wishing peace and love to all!

• Video: Tai chi
• Video: Mammogram for breast cancer — What to expect

show: Stages of breast cancer

By Mayo Clinic staff

• Slides:
• 1
• 2
• 3
• 4
• 5
• 6

Stages of breast cancer

The extent, or stage, of your breast cancer gives your doctor an idea of your prognosis — the likely outcome of your disease — and helps guide treatment decisions.
Your doctor determines your stage of breast cancer through examination of the tissue removed during a mastectomy or lumpectomy and of the lymph nodes under your arm.
Your breast cancer stage takes into account how large your cancer is and whether it has spread beyond your breast. Using this information, your doctor assigns a Roman numeral — I through IV — that describes your breast cancer stage.
Double click next slide will take you to article. (I hope)
Next slide

• Basics
• In-Depth
• Multimedia
• Expert Answers
• Expert Blog
• Resources
• What's New

• Images

Marching Forward with postive energy! I Have Hair (some hair), Post Chem updates.

Hello Everyone:) Some after chemo thoughts. I think I mentioned before that I have had to deal with some depression, after my reconstruction surgery. The thing was it took me a while to understand that I was depressed. When you do not want to get off the couch, walk talk, eat - even the feeling of helpless. Those of you that know me, understand  this description is  really the opposite of my normal self.   Here are some signs of depression :

Depression symptoms include:

• Feelings of sadness or unhappiness
• Irritability or frustration, even over small matters
• Loss of interest or pleasure in normal activities
• Reduced sex drive
• Insomnia or excessive sleeping
• Changes in appetite — depression often causes decreased appetite and weight loss, but in some people it causes increased cravings for food and weight gain
• Agitation or restlessness — for example, pacing, hand-wringing or an inability to sit still
• Irritability or angry outbursts
• Slowed thinking, speaking or body movements
• Indecisiveness, distractibility and decreased concentration
• Fatigue, tiredness and loss of energy — even small tasks may seem to require a lot of effort
• Feelings of worthlessness or guilt, fixating on past failures or blaming yourself when things aren't going right
• Trouble thinking, concentrating, making decisions and remembering things
• Frequent thoughts of death, dying or suicide
• Crying spells for no apparent reason
• Unexplained physical problems, such as back pain or headaches

When I realized depression had settled in I called my family Dr. she increase  the dose of the anti depression I was taking. After a few days I was feeling much better. The lesson I have learned is reach out to others make a phone call , you do not to have to live with these over whelming feelings. Never feel like you are bothering your Doctor.  You just simple have to do it! Depression tries to creep back in, I am wiser now  and will not let it take over my daily life!

~~~~~~~~~~~~~~~~~~~~

Today I saw Dr. Bhandari for my  two month checkup - he is doubling my dose of Tamoxifen for the next two months, I am tolerating  Tamoxifen well :)  However I will not be taking it for five years. IN December he will be introducing me to a new estrogen blocker. I will stop the Tamoxifen. Of course I can not remember the name of the new drug! LOL There is a new study out that shows the newer drug is more effective in preventing re occurrence of breast cancer. I asked him about re-occurrence.  He said it could come back, it could come back any where in my body.  How do you know if it comes back? He will check my blood work every six months, blood count is important, He also wants to know if I develop any pain that does not go away.  I am now aware of  the fact that cancer does not just go away. Chemo kills the current cancer but does not stop it from coming back. As I walk this path "living with cancer"  I truly under stand the meaning of early detection. This is breast cancer awareness , make sure please please  you get you mammogram/ ultra sounds and you check ups.

I will continue  to try and make a difference any way I can. If someone needs help  on their journey I will be available.Reaching out to others is my therapy

Chemo Brain - OMG it is very hard to carry on a normal conversation. It takes a while to pull out of my brain what I am trying to say. I have discovered this is normal! I am going to let Idelle Davidson explain it for me. hehe I have some pictures to post but I can not figure out how to post  them.  I will get Peter to help !
 

 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Post Chemo by Idell Davidson

I was forgetful, would have to really focus to keep myself on task. Mid-sentence, I would either forget a word, get stuck on a word, or simply stop talking because I could not remember what I was saying.

Nine months post-chemo I went on a trip with girlfriends and could barely focus on a conversation or events. I dreaded going because I knew I was not myself. Then at night I would cry ALOT which was very unlike me. The post-chemo was far worse than actual chemo for me. It all just hit me and never left. I was going on job interviews, talking to recruiters because I had to, but looking back I was messed up.

I am two years from diagnosis this month and I finally feel like myself. I would say the fog has lifted 90%. The tamoxifen seems to have no effect on anything for me, thankfully.

The most telling part of my chemo fog, is when reading your book how long it took me to remember where I put my paperwork so I knew what chemo drugs I took (cytoxan and docetaxel)!

ourbrainafterchemo.blogspot.com/2010/01/breast-cancer-at-38-with-fog-depression.html

Welcome to My Blog

Idelle Davidson is an award-winning journalist, a breast cancer survivor, and the recipient of the 2009 Pillar of Strength Award from the

From: MORAGAJO@aol.com
Date: September 11, 2012 7:25:23 PM EDT
To: susanpi@aol.com
Subject: (no subject)

So glad the trip was a success and the storm didn't mess it up for you as I was thinking about that.

When I first heard about your journey back to good health it seemed like it would take forever and I'm sure it felt that way at times to you.  Now it is over and I love your smile and attitude that pulled you through.

 

Now the rest of your life begins - enjoy.    Josie

Shell Island

 Dana Dearwater, Cheryl Matthews, Me  - yes I do have a beer and it is a glass bottle,  on the beach!

 My older brother Tom:)

False Promises on Ovarian Cancer

Published: September 11, 2012

(Note : I would like to know who was on this panel that have come to this conclusion. If the test saves one life it is worth having)  You can  appear healthy and still have cancer. We need to use all the tools/testing that is available!  Early detection can save your life! 
Susan

New evidence that women are more likely to be harmed than helped by screening tests for ovarian cancer is disturbing. The tests do nothing to prevent healthy women from dying from the usually fatal disease. Yet they often lead doctors to perform needless surgeries that cause serious complications in many patients.

Related

• Ovarian Cancer Screenings Are Not Effective, Panel Says (September 11, 2012)

• Health Guide: Ovarian Cancer

Connect With Us on Twitter

For Op-Ed, follow @nytopinion and to hear from the editorial page editor, Andrew Rosenthal, follow @andyrNYT.

The judgment from the United States Preventive Services Task Force, issued on Monday, updates its longstanding verdict that healthy women with an average risk of ovarian cancer should not be screened for the disease. The task force, 16 federally appointed experts, makes recommendations on which screening tests work and which don’t. The American Cancer Society and the American Congress of Obstetricians and Gynecologists have also discouraged the use of screening tests for ovarian cancer in most women.

Such advice does not apply to women who have genetic mutations or a family history that puts them at high risk or to women who have suspicious symptoms, like persistent bloating and pelvic or abdominal pain, symptoms that are not unique to ovarian cancer.

The task force relied heavily on a large study published last year of 78,000 women ages 55 to 74, half of whom were screened with ultrasounds and blood tests for a biological marker of ovarian cancer, and half of whom were not. After following them for 11 to 13 years, the death rate from ovarian cancer was the same in both groups. But nearly 10 percent of those screened, more than 3,200 women, had false-positive results and more than 1,000 of them had surgery, usually to remove one or both ovaries. Many of them had serious complications, such as surgical injuries to other organs, infections and blood clots.

As Denise Grady pointed out in The Times on Tuesday, the problem with the tests is that the biological marker being measured (CA-125) can be elevated by conditions other than cancer and the ultrasounds can reveal benign cysts that cannot be distinguished from cancer without surgery to remove the ovary.

Despite the expert advice against routine screening, a survey of 1,000 doctors published in February found that a third of them believed that screening was effective and many offered it to patients. Many patients request screening, believing that it can find the disease early enough to save lives. It is long past time for doctors and their patients to recognize that this assumption is wrong.

Pictures From The Beach

Sunset on Panama City Beach! The tropical storm/hurricane  did not keep us from going to the beach. We had 10 days of celebrating my recovery. My strength is finally returning  we had a great time!

We took a boat ride in the bay, looking for dolphins. We did not  see any:)  the water was a bit rough after the storm and all the rain. We went to Shell Island it has beautiful  beaches with wild grasses  it sits between the Gulf of Mexico and the Bay. A little tiny island. We also stopped at Limes an outdoor  grill. The fruit punch drink was very tasty ! Lime's made the national news a few years ago when President Obama   stopped in for a visit.

http://www.yelp.com/biz/limes-dockside-bar-and-grill-panama-city

Mike Jackson, my friend Kathy's son was our Captain. He is a great sport he is brave enough to go with us on our annual "girl's trip". He shows his humor  while dealing with his Mother and her awesome friends. He also tells stories about his adventures with us, mostly about Kathy who  is lots of fun when she has a few cocktails.

Tom Ward & Clyde Akard

I think they were thinking omg what have we gotten our selves into with all these crazy women.

My Dog Sugar, My New Hair

I have never uploaded a video before so I hope this works. My walking companion is my dog Sugar. ( thou I would like my hubby Peter to be my walking companion) Sugar is a very smart dog, she knows everything you say to her. she can find all her many toys by name, she also knows that when we go for a walk she has to pre~poop in the back yard. I gather our walking tools like the leash and keys we go outside and I tell her to go poop ! Here is what happens. She is a hoot!

I know my brother Tom is anxious to see my new hair do....I want Tom and Clyde to be able to recognize me at the airport on Thursday. My hair is growing, I am not sure what color it is. My red hair is gone, I know it cannot possible be gray. At least it is growing some of it is dark !

Another opnion about Tamoxifen ~ Very Funny

  I copied this from another persons blog.  She was having a very hard time with tamoxifen. Please read below, she is very funny:)

Thank you Beth.

 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Breast Cancer? But Doctor....I hate pink!

Blogging my life with breast cancer, from suspicion to diagnosis to treatment. Now livin' the Stage IV Lifestyle! Terminal Cancer can be funny. Just not for very long.   

• 5 months ago

Cancer Patients Laugh Too

Thursday, June 3, 2010

More on Tamoxifen Side Effects

In a previous post, I shared with you that I was experiencing a little tamoxifen rage, euphemistically called "mood swings" by my oncologist.

Let's describe some of the other side effects that have popped up since then, shall we?

Along with the aforementioned tamox-rage, I also seem to be experiencing the inability to, shall we say, STFU. I don't know what's happened, but I've turned into that little old lady who says whatever the hell is on her mind without regard to how anybody else is going to take it. My thoughts come straight out of my mouth, without any stoppage. That might be cute, even admirable, when you are 95 and non-threatening in every other way. Hearing granny say, "Hey you fucking kids, get off my lawn" is cute.

Hearing your school secretary say it? Not so much.

Speaking of a little old lady, a few months ago I was a vibrant middle-aged woman who looked younger than her age. Now, I'm a hag. Literally. The skin is starting to hang off my bones. My arms look like they are melting. The tamoxifen is sucking me dry, and I've even gotten an (ahem) lady infection.

I've aged ten years in two months and am afraid to see what will happen in another two. I used to look at old-fashioned, 50's era photos of women my age and feel pity. They dressed like old ladies, they looked like old ladies. You know that your grandma, when she was my age, was wearing sensible shoes and a baggy housedress and baking cookies. Not me. I was glad to live in this age of Kim Catrell where I could still wear 3 inch rise jeans and five inch heels and eat salads with my girls. I now can't wear heels (more on that later) and I am seriously considering a pair of elastic waist jeans.

The tamoxofin may be sucking me dry, but it's also making me sweat. The hot flashes are not really flashes of heat; what a misnomer that phrase is! I just don't feel hot - instead, my brain seems to have a complete inability to regulate my body temperature. One second I'm freezing to death (and it's 80 degrees outside) and the next second I am boiling and sweating. I've never been a sweater so it's very disconcerting to find sweat running down my plastic cleavage (and my shins, and my forearms). All day long, every 15 minutes, I switch from boiling to freezing. One second I'm huddled in a blanket and the next second I'm ripping off my shirt. (Oh, THAT'S why it's called flashes!) It's like season five on Lost, where you flash from year to year uncontrollably. Only, without Josh Holloway.

Because of tamoxifen, my poor brain won't regulate my mouth or my temperature.

Why can't I wear heels, you ask? You know how I love them. Well, I ache. I ache all over. I ache from head to toe. My bones hurt. My hips hurt. Walking in heels makes my hip bones feel like they are rubbing up against each other. Even my ribs hurt.

The muscles around my bones hurt and my back really hurts. I have one spot in my back that is particularly painful, and that seems to be the part of the spine that holds you upright. So, sitting and standing - hurts. The pain is like those growing pains you had when you were a kid - you remember lying in bed and feeling that deep, horrible ache? And, your mom would put a towel in hot water to warm it up and wrap it around your legs? I have that everywhere, all day long.

I take a hot bath each morning to ease the pain and get my muscles loose enough to move. I am still on part-time hours at work precisely because it takes me so long to move in the morning. I fear for the day I have to leave the house at 6:30 a.m.

Getting up won't be a problem though, because I can't sleep. Who needs sleep anyway? Certainly, my cat is happy with my insomnia because she gets to be petted all night. I'm sometimes so tired I fall asleep after dinner but even then, I can't get a real nap in. I wake up in ten minutes like I had a night's worth of sleep and then, you guessed it, it's hard to get to sleep at bedtime. If I do sleep, it's in brief increments and I wake up throughout the night, typically when I try to rollover and all the sheets are stuck to me because I've sweated through them.

I can't shut up, regulate my body temperature, or sleep and I hurt all over. Thank you, Tamoxifen.

Tamoxifin is an anti-cancer drug given to pre-menopausal women. It is an estrogen blocker. My cancer "feeds" on estrogen and this medicine takes away the ability of any remaining cancer cells to grow. I am supposed to take it for five years.

I can tell you after two months, that I won't make it those five years. Something is going to have to change. Dr. B, you are warned. 

Link to blog: 

http://www.butdoctorihatepink.com/2010/06/more-on-tamoxifen-side-effects.html

Fighting cancer is like a giant game of Mother May I. There are times when you take a  few steps forward and than a few steps back.  This is so true. I have taken a giant leap forward. I am feeling good. I have been driving and I helped Peter in the yard today. The yard though it is small has been a challenge this year. It takes a lot of work. Peter has been repairing our stone walls in front of the house. He is  strong and lugs the rocks and cement around with ease.  We will be heading to the beach and enjoy life  with our friends and family - It has been a long year.   This will be a celebration for both of us. The cancer walk is moving behind us.
 A good thing:) This is the deck garden. tomato plant is not doing well.

Wilma sleeps in a picture frame right next to our bed, on my side. She loves the frame.

My Hair is growing

Hi Everybody, Sorry I have ignored my own blog. ha ha  Here is a quick update.
After the reconstruction surgery. I  had a reaction or injury to my mouth. This included pain, bruising, swelling, my taste buds and appetite.  I think this happened because who ever was in charge of the items they put in your mouth was not very careful.  Otherwise the surgery went well. Very little recovery time. When they took the expander s out my leg pain departed also :) A very good thing. My new breast/boobs look marvelous!

 However, this is  not a good thing  - I have had  to deal with depression, serious depression. It appears this is common after a battle with cancer. As you start your journey towards being a cancer survivor. One more thing the  Dr's should discuss with their patients.
My attitude  was -  great this is all behind me - everything is awesome! However that did not happen, I had no energy, appetite, was not sleeping, hot flashes, lack of interest in anything - At first I attributed this to the aftermath of the last surgery and all the trauma my body  has gone through. Plus the start of my oral medication.
"Tamoxifen".  Depression kind of creeps up on you. I went from I can do this to I do not want to do this. After a few weeks I called my family Dr. a nice anti depressant  is helping.   I am a strong woman and look forward to a long and happy life.

What is tamoxifen?  I hope you never have to take this type of drug. I will be on this for 5 years :(

Tamoxifen blocks the actions of estrogen, a female hormone. Certain types of breast cancer require estrogen to grow.
Tamoxifen is used to treat some types of breast cancer in men and women. Tamoxifen is also used to lower a woman's chance of developing breast cancer if she has a high risk (such as a family history of breast cancer).
side effects may include:

• hot flashes;
• bone pain, joint pain, or tumor pain;
• swelling in your hands or feet;
• vaginal itching or dryness;
• loss of appetite
• headache, dizziness, depression; or
• thinning hair.
  ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
  Peter has retired and we are hanging out together, we are heading to Panama Beach , Florida. We will be celebrating my recovery with our best friends and my brother Tom and bother in law Clyde.  What could be better than partying at the beach.
  
  MY hair is growing!
  
  
   Thank you reading my blog.  I hope this information will help others and their families who may travel a similar journey. Peace and love to all:)
  
  
  

With Mayo Clinic nurse educator Sheryl M. Ness, R.N. A personalized approach is best as men consider the benefits and risks of PSA screening for prostate cancer. continue reading

Gene expression profiling for breast cancer: What is it? Gene expression profiling is a treatment-planning tool designed to help predict whether early-stage breast cancer will return after initial treatment.

Advise for "older patients" that develop breast cancer

Breast Cancer Breast Cancer Symptoms / Diagnosis Treatment Daily Life From Pam Stephan, your Guide to Breast Cancer When a breast tumor is small and hasn't shed any cells, it may be early stage and very treatable. Many older patients are treated with lumpectomy and hormone therapy alone. But is that good enough? Post-Lumpectomy Radiation Prevents Recurrence and Mastectomy Women who are 70 and over with early-stage breast cancer aren't always offered the full array of treatments to prevent recurrence. A new study shows that those who had lumpectomy and radiation fared better than those who had surgery only. Are standards about to change again? See More About:  lumpectomy  radiation  early stage Lumpectomy - Surgery for Breast Cancer A lumpectomy is done to remove just the tumor and a small margin of tissue around it. Your breast may have a dimple or a "dent" in it afterwards, but you will still have a breast. Learn what to expect from a lumpectomy. See More About:  lymph nodes  lumpectomy  breast cancer surgery 10 Radiation Treatment Myths Only in comic books do people get exposed to radiation and then become either: gross monsters or fabulous superheroes. Medical radiation for cancer isn't perfect, but it can help prevent a recurrence. Here's what a radiologist has to say. See More About:  radiation treatments  cancer myths  mammograms Hormonal Treatments for Breast Cancer An overwhelming number of breast cancer tumors are fueled by hormones. In order to reduce the risk of your cancer coming back, your oncologist will prescribe 5 years of hormonal treatments. These drugs are just about the exact opposite of hormone replacement therapy - they will lower your hormone levels to starve any leftover cancer cells. But not all these drugs work just alike. See More About:  estrogen  estrogen receptor positive  aromatase inhibitor

Live By Inspiring Others To Fly

"Live By Inspiring Others To Fly" 

 I feel like I am ready to fly, the surgery is over and went well. It was a different experience as it was done at St Elizabeth's Surgical Center. This was a small setting, like going to the Doctors office. I had to be there at noon with the surgery scheduled for 1:30 pm.. Lots of different types of people in the waiting room;) and a soap opera on the TV  along with a lot of storm warnings ~ I admit the thought ran through my hairless head ~ gosh what would happen if they loose power here in the middle of my surgery. They were mentioning 60 mph  winds. Someone from the operating area came out to see what the television was saying  about the weather. Oh my!


They started a bit late, Peter had to go back to the waiting room.  When I woke up I had no idea where  I was and I was very cold.  They were trying to warm me up with warm blankets. ( at least the electric did not go out) . I was in the recovery room, which was two feet away from the holding room. I asked a couble of times  for Peter and they said he could come back after I got out of the recovery area. They were concerned that I had a rash on my face and I was cold. So two hours later I woke up - again and I am still in the recovery area. The nurse told me that they were waiting for Dr Williams  ( who is in pratice with my Dr.) to look at this rash on my face. OK. He eventually came out and  said I was fine.


Suddenly they wheeled in another patient. She was very bubbly and had just  had her breast done.
She wanted to know what kind of surgery I had. So I told her and she exclaimed "that's what I had done, what size did you get" ! LOL  I told her I had no idea as I had just woken up.  That was priceless!

I am ready to fly, fly to the beach in  Florida!

Waiting Room St E's surgical center

Expanders are commingling out today;)

Of course we do not have gray hair!

 Information on the growth of hair and the results after chemo. Of course we do not have gray hair!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

In a message dated 7/17/2012 8:42:14 P.M. Eastern Daylight Time, lnbstew@6thsensedesign.com writes:

Sue, Hi!! Well about the hair. Mine is still wavy in the back ands still very short. It is very dark and more gray hair than I have ever had, but i do get highlights now. Actually I am going tomorrow to get foiled. I refuse to have such dark hair. Need my highlights. It will take a while and it comes in curly. For someone who never had curly hair i kind of enjoyed it. It only lasts 1 year than it is straight again. I have heard of people with curly hair getting straight hair. You sound quite good. I have decided to go to San francisco in Sept. and stay with my Aunt for a couple of weeks. I have to take oxygen which is a Pain in the ass but they will not let me leave without it. I do not use it but doesn't matter. Looking forward to getting out of this heat. Should really be nice that time of year. When are you having surgery? I really admire you doing the reconstruction. I just can't imagine having it. I had two lumpectomys and that is enough. Take care.

Love, Linda

 

 

In a message dated 7/17/2012 2:38:13 P.M. Eastern Daylight Time, kc4nsicrn@aol.com writes:

Susan, I just read the great news! How wonderful! Wanted to let you know that my friend who lost her hair after chemo, had very curly hair when it came back. God leads us to the right path, huh? wow, prayers worked.

Karen Chabert,
504-891-6293 Phone/Fax
504-343-9095 Cell Phone

New Breasts and New Hair are on the Horizion

Hello Everyone! 
It is hot in Cincinnati/Northern KY
I am finally feeling better! I was beginning to think I was just going to turn into an inactive boring aging  elder woman. I am five weeks and 2 days  out of chemo! My chemo days are a thing of the past and I am moving forward  on new life paths. I still have not made it to working in the yard ~ we are having a drought and another heat wave. I am getting bored.


My blood work is good and my bones are actually stronger that they were a year ago. Thank you to the horrid bone marrow shots I had to have after each round of chemo.


Tuesday  July 24, 2012 - I am having the expanders removed and my reconstruction surgery:)  I can not wait to get this done! I feel like I have rocks on my chest. Good bye to the expanders  which are tied to my ribs and full of sterile  solution . The surgical procedure is done as an out patient procedure - a fairly simple surgery. I THINK!  Of course this involves all the pre-surgery things that I have to do. A  pre-surgery physical with my family Dr. and an EKG. Another visit to Dr Vashi (plastic surgeon) - who I just saw last week. Than the pre- physical they give you at the hospital . The best thing is I will have my new breasts and they will be perfect and soft! I will be healed  for my trip to the beach:)


My hair is kind of interesting - I have a few bits of white fuzz on top of my head. I have heard all kinds of stories about the regrowth of after chemo hair. My oncologist Dr. Bhandari- commented the fuzz I have is just the first growth of hair  eventually I will have a second growth of hair. How long does this take? A few years! Usually the hair comes in curly ( I guess the hair follicles are damaged and the hair grows crooked) It also changes color - somethings it comes in red or different colors. Well, this white stuff is going to make me look like a  Q-tip. I anticipate by fall I will be wearing my wig! Gray hair is not my style.

Thanks for following my journey. Remember early detection saves lives! As we age we need to follow Dr's orders - mammograms and colonoscopy's are a must!


xoxox
Susan

The American Cancer Society “Guidelines for the Early Detection of Cancer” recommend, beginning at age 50, both men and women follow f these testing schedules for screening to find colon polyps and cancer: 1. Flexible  Colonoscopy    every 5 years.


My new hair!

Tissue expanders - these will be gone next week yayayaya

DR.Wartman's story. Glimpses of research and genetic linked cancer

Happy Sunday 

July 8, 2012

Robin my nephew Micheal's wife ( so my niece)  who suffers from leukemia, is in her second remission, her Dr's are at OH State Hospital. She is doing great! This is a glimpse into what is happening in the world of research. Some of these genes  begin to  grow and multiply quickly. My cancer was driven by estrogen and there is some suspect  of the  p52 gene  which may be responsible  for this estrogen invading my body. 

I have posted this article on Facebook ~ this is a major break through in genetics and the link to cancer. This is a lot to read but it is important. My Dr. wants me to get into a genetic program at a research hospital, he has mentioned OH State and the University of Michigan. I see him tomorrow and I am taking him a copy of this report. 

It is still so hot out, high of 95 degrees beats 105! Still to hot to do much of anything.  Impossible to work in the yard. We are hoping for rain without major thunder storms that could knock our power out! We have lots of very old trees that topple in such storms. SO I am crossing my fingers for simple rain.

I feel a bit better everyday~ my legs still hurt ~ guess I will find out tomorrow what the leg discomfort is about .  This morning I did drive to the drug store and stopped and got some fruit and salad from the salad bar at Remkes Market. The first time I have driven since my trip to Krogers LOL and their salad bar:) I ave been knitting and spinning some yarn.

 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

In Treatment for Leukemia, Glimpses of the Future

Second Chance: Lukas Wartman, a leukemia doctor and researcher, developed the disease himself. Facing death, his colleagues sequenced his cancer genome. The result was a totally unexpected treatment.

By GINA KOLATA

Published: July 7, 2012 222 Comments

• Facebook
• Twitter
• Google+
• Email
• Share
• Print
• Single Page
• Reprints
• 

ST. LOUIS — Genetics researchers at Washington University, one of the world’s leading centers for work on the human genome, were devastated. Dr. Lukas Wartman, a young, talented and beloved colleague, had the very cancer he had devoted his career to studying. He was deteriorating fast. No known treatment could save him. And no one, to their knowledge, had ever investigated the complete genetic makeup of a cancer like his.

Multimedia

Graphic

Searching for a Cancer’s Vulnerable Target

Enlarge This Image

Dilip Vishwanat for The New York Times

Dr. Lukas Wartman, a leukemia patient in remission, being examined by his doctor, John DiPersio, in January in St. Louis.

Readers’ Comments

Share your thoughts.

• Post a Comment »
• Read All Comments (222) »

So one day last July, Dr. Timothy Ley, associate director of the university’s genome institute, summoned his team. Why not throw everything we have at seeing if we can find a rogue gene spurring Dr. Wartman’s cancer, adult acute lymphoblastic leukemia, he asked? “It’s now or never,” he recalled telling them. “We will only get one shot.”

Dr. Ley’s team tried a type of analysis that they had never done before. They fully sequenced the genes of both his cancer cells and healthy cells for comparison, and at the same time analyzed his RNA, a close chemical cousin to DNA, for clues to what his genes were doing.

The researchers on the project put other work aside for weeks, running one of the university’s 26 sequencing machines and supercomputer around the clock. And they found a culprit — a normal gene that was in overdrive, churning out huge amounts of a protein that appeared to be spurring the cancer’s growth.

Even better, there was a promising new drug that might shut down the malfunctioning gene — a drug that had been tested and approved only for advanced kidney cancer. Dr. Wartman became the first person ever to take it for leukemia.

And now, against all odds, his cancer is in remission and has been since last fall.

While no one can say that Dr. Wartman is cured, after facing certain death last fall, he is alive and doing well. Dr. Wartman is a pioneer in a new approach to stopping cancer. What is important, medical researchers say, is the genes that drive a cancer, not the tissue or organ — liver or brain, bone marrow, blood or colon — where the cancer originates.

One woman’s breast cancer may have different genetic drivers from another woman’s and, in fact, may have more in common with prostate cancer in a man or another patient’s lung cancer.

Under this new approach, researchers expect that treatment will be tailored to an individual tumor’s mutations, with drugs, eventually, that hit several key aberrant genes at once. The cocktails of medicines would be analogous to H.I.V. treatment, which uses several different drugs at once to strike the virus in a number of critical areas.

Researchers differ about how soon the method, known as whole genome sequencing, will be generally available and paid for by insurance — estimates range from a few years to a decade or so. But they believe that it has enormous promise, though it has not yet cured anyone.

With a steep drop in the costs of sequencing and an explosion of research on genes, medical experts expect that genetic analyses of cancers will become routine. Just as pathologists do blood cultures to decide which antibiotics will stop a patient’s bacterial infection, so will genome sequencing determine which drugs might stop a cancer.

“Until you know what is driving a patient’s cancer, you really don’t have any chance of getting it right,” Dr. Ley said. “For the past 40 years, we have been sending generals into battle without a map of the battlefield. What we are doing now is building the map.”

Large drug companies and small biotechs are jumping in, starting to test drugs that attack a gene rather than a tumor type.

Leading cancer researchers are starting companies to find genes that might be causing an individual’s cancer to grow, to analyze genetic data and to find and test new drugs directed against these genetic targets. Leading venture capital firms are involved.

For now, whole genome sequencing is in its infancy and dauntingly complex. The gene sequences are only the start — they come in billions of small pieces, like a huge jigsaw puzzle. The arduous job is to figure out which mutations are important, a task that requires skill, experience and instincts.

So far, most who have chosen this path are wealthy and well connected. When Steve Jobs had exhausted other options to combat pancreatic cancer, he consulted doctors who coordinated his genetic sequencing and analysis. It cost him $100,000, according to his biographer. The writer Christopher Hitchens went to the head of the National Institutes of Health, Dr. Francis Collins, who advised him on where to get a genetic analysis of his esophageal cancer.

Harvard Medical School expects eventually to offer whole genome sequencing to help cancer patients identify treatments, said Heidi L. Rehm, who heads the molecular medicine laboratory at Harvard’s Partners Healthcare Center for Personalized Genetic Medicine. But later this year, Partners will take a more modest step, offering whole genome sequencing to patients with a suspected hereditary disorder in hopes of identifying mutations that might be causing the disease.

Whole genome sequencing of the type that Dr. Wartman had, Dr. Rehm added, “is a whole other level of complexity.”

Dr. Wartman was included by his colleagues in a research study, and his genetic analysis was paid for by the university and research grants. Such opportunities are not available to most patients, but Dr. Ley noted that the group had done such an analysis for another patient the year before and that no patients were being neglected because of the urgent work to figure out Dr. Wartman’s cancer.

“The precedent for moving quickly on a sample to make a key decision was already established,” Dr. Ley said.

• 1

  In Treatment for Leukemia, Glimpses of the Future

  Published: July 7, 2012 222 Comments

  • Facebook
  • Twitter
  • Google+
  • Email
  • Share
  • Print
  • Single Page
  • Reprints
  • 
  (Page 2 of 3)
  

  Ethicists ask whether those with money and connections should have options far out of reach for most patients before such treatments become a normal part of medicine. And will people of more limited means be tempted to bankrupt their families in pursuit of a cure at the far edges?
  Enlarge This Image

  

  Sid Hastings for The New York Times

  “I was definitely scared. It was so unreal,” said Dr. Wartman on first suspecting that he had leukemia, the very disease he had devoted his medical career to studying.

  Multimedia

  Graphic

  Searching for a Cancer’s Vulnerable Target

  Enlarge This Image

  

  Dilip Vishwanat for The New York Times

  Vials of Dr. Wartman’s blood that were used to check his white blood cell count.

  Readers’ Comments

  Share your thoughts.

  • Post a Comment »
  • Read All Comments (222) »
  “If we say we need research because this is a new idea, then why is it that rich people can even access it?” asked Wylie Burke, professor and chairwoman of the department of bioethics at the University of Washington. The saving grace, she said, is that the method will become available to all if it works.

  A Life in Medicine

  It was pure happenstance that landed Dr. Wartman in a university at the forefront of cancer research. He grew up in small-town Indiana, aspiring to be a veterinarian like his grandfather. But in college, he worked summers in hospitals and became fascinated by cancer. He enrolled in medical school at Washington University in St. Louis, where he was drawn to research on genetic changes that occur in cancers of the blood. Dr. Wartman knew then what he wanted to do — become a physician researcher.

  Those plans fell apart in the winter of 2002, his last year of medical school, when he went to California to be interviewed for a residency program at Stanford. On the morning of his visit, he was nearly paralyzed by an overwhelming fatigue.

  “I could not get out of bed for an interview that was the most important of my life,” Dr. Wartman recalled. Somehow, he forced himself to drive to Palo Alto in a drenching rain. He rallied enough to get through the day.

  When he returned to St. Louis, he gave up running, too exhausted for the sport he loved. He started having night sweats.

  “I thought it might be mono,” he said. “And I thought I would ride it out.”

  But then the long bones in his legs began to hurt. He was having fevers.

  He was so young then — only 25 — and had always been so healthy that his only doctor was a pediatrician. So he went to an urgent care center in February 2003. The doctor there thought his symptoms might come from depression, but noticed that his red and white blood cell counts were low. And Lukas Wartman, who had been fascinated by the biology of leukemia, began to suspect he had it.

  “I was definitely scared,” he said. “It was so unreal.”

  The next day, Mr. Wartman, who was about to graduate from Washington University’s medical school, went back there for more tests. A doctor slid a long needle into his hip bone and drew out marrow for analysis.

  “We looked at the slide together,” Dr. Wartman said, recalling that terrible time. “It was packed with leukemia cells. I was in a state of shock.”

  Dr. Wartman remained at the university for his residency and treatment: nine months of intensive chemotherapy, followed by 15 months of maintenance chemotherapy. Five years passed when the cancer seemed to be gone. But then it came back. Next came the most risky remedy — intensive chemotherapy to put the cancer into remission followed by a bone-marrow transplant from his younger brother.

  Seven months after the transplant, feeling much stronger, he went to a major cancer meeting and sat in on a session on his type of leukemia. The speaker, a renowned researcher, reported that only 4 or 5 percent of those who relapsed survived.

  “My stomach turned,” Dr. Wartman said. “I will never forget the shock of hearing that number.”

  But his personal gauge of recovery — how far he could run — was encouraging.

  By last spring, three years after his transplant, Dr. Wartman was running six to seven miles every other day and feeling good. “I thought maybe I would run a half marathon in the fall.”

  Then the cancer came back. He remembered that number, 4 or 5 percent, for patients with one relapse. He had relapsed a second time.

  This time, he said, “There is no number.”

  His doctors put him on a clinical trial to try to beat the cancer with chemotherapy and hormones. It did not work.

  They infused him with his brother’s healthy marrow cells, to no avail.

  A Clue in RNA

  Dr. Wartman’s doctors realized then that their last best hope for saving him was to use all the genetic know-how and technology at their disposal.
• 2

  In Treatment for Leukemia, Glimpses of the Future

  Published: July 7, 2012 222 Comments

  • Facebook
  • Twitter
  • Google+
  • Email
  • Share
  • Print
  • Single Page
  • Reprints
  • 

  (Page 3 of 3)
  

  After their month of frantic work to beat cancer’s relentless clock, the group, led by Richard Wilson and Elaine Mardis, directors of the university’s genome institute, had the data. It was Aug. 31.

  Enlarge This Image

  

  Dilip Vishwanat for The New York Times

  A recovering Dr. Wartman with Dr. DiPersio, in January.

  Multimedia

  Graphic

  Searching for a Cancer’s Vulnerable Target

  Readers’ Comments

  Share your thoughts.

  • Post a Comment »
  • Read All Comments (222) »

  The cancer’s DNA had, as expected, many mutations, but there was nothing to be done about them. There were no drugs to attack them.

  But the other analysis, of the cancer’s RNA, was different. There was something there, something unexpected.

  The RNA sequencing showed that a normal gene, FLT3, was wildly active in the leukemia cells. Its normal role is to make cells grow and proliferate. An overactive FLT3 gene might be making Dr. Wartman’s cancer cells multiply so quickly.

  Even better, there was a drug, sunitinib or Sutent, approved for treating advanced kidney cancer, that inhibits FLT3.

  But it costs $330 a day, and Dr. Wartman’s insurance company would not pay for it. He appealed twice to his insurer and lost both times.

  He also pleaded with the drug’s maker, Pfizer, to give him the drug under its compassionate use program, explaining that his entire salary was only enough to pay for 7 ½ months of Sutent. But Pfizer turned him down too.

  As September went by, Dr. Wartman was getting panicky.

  “Every day is a roller coaster,” he said at the time, “and everything is up in the air.”

  Desperate to try the drug, he scraped up the money to buy a week’s worth and began taking it on Sept. 16. Within days, his blood counts were looking more normal.

  But over dinner at a trendy St. Louis restaurant, he picked at his chicken and said he was afraid to hope.

  “Obviously it’s exciting,” he said. “But Sutent could have unanticipated effects on my bone marrow.” Maybe his rising red blood cell counts were just a side effect of the drug. Or maybe they were just a coincidence.

  “It’s hard to say if I feel any different,” Dr. Wartman said.

  And the cost of the drug nagged at him. If it worked, how long could he afford to keep taking it?

  The next day, a nurse at the hospital pharmacy called with what seemed miraculous news: a month’s supply of Sutent was waiting for Dr. Wartman. He did not know at the time, but the doctors in his division had pitched in to buy the drug.

  Two weeks later, his bone marrow, which had been full of leukemia cells, was clean, a biopsy showed.

  Still, he was nervous. The test involved taking out just a small amount of marrow. Cancer cells could be lurking unseen.

  The next test was flow cytometry, which used antibodies to label cancer cells. Again, there were no cancer cells.

  But even flow cytometry could be misleading, Dr. Wartman told himself.

  Finally, a yet more sensitive test, called FISH, was done. It labels cancer cells with fluorescent pieces of DNA to identify leukemia cells. Once again, there were none.

  “I can’t believe it,” his awe-struck physician, Dr. John DiPersio, told him.

  Dr. Wartman, alone in his apartment, waited for his partner, Damon Berardi, to come home from work. That evening, Mr. Berardi, a 31-year-old store manager, opened the door with no idea of Dr. Wartman’s momentous news. To his surprise, Dr. Wartman was home early, waiting in the kitchen with champagne and two flutes he had given Mr. Berardi for Christmas. He told Mr. Berardi he should sit down.

  “My leukemia is in remission,” he said. The men embraced exultantly, and Dr. Wartman popped open the champagne.

  “I felt an overwhelming sense of relief and a renewed vision of our future together,” Mr. Berardi said. “There were no tears at that moment. We had both had cried plenty. This was a moment of hope.”

  Hunches and Decisions

  Dr. Wartman and his doctors had fateful decisions to make, with nothing but hunches to guide them. Should he keep taking Sutent or have another bone-marrow transplant now that he was in remission again?

  In the end, Dr. DiPersio decided Dr. Wartman should have the transplant because without it the cancer might mutate and escape the Sutent.

  Meanwhile, Pfizer had decided to give him the drug. Dr. Wartman has no idea why. Perhaps the company was swayed by an impassioned plea from his nurse practitioner, Stephanie Bauer.

  Dr. Wartman’s cancer is still gone, for now, but he has struggled with a common complication of bone-marrow transplants, in which the white blood cells of the transplanted marrow attack his cells as though they were foreign. He has had rashes and felt ill. But these complications are gradually lessening, and he is back at work in Dr. Ley’s lab.

  His colleagues want to look for the same mutation in the cancer cells of other patients with his cancer. And they would like to start a clinical trial testing Sutent to discover whether the drug can help others with leukemia, or whether the solution they found was unique to Lukas Wartman.

  Dr. Wartman himself is left with nagging uncertainties. He knows how lucky he is, but what does the future hold? Can he plan a life? Is he cured?

  “It’s a hard feeling to describe,” he said. “I am in uncharted waters.”

  Monday: Promise and heartbreak.

A version of this article appeared in print on July 8, 2012, on page A1 of the New York edition with the headline: In Leukemia Treatment, Glimpses of the Future.