Thursday, July 26, 2012

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!

Friday, July 20, 2012

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, 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, 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

Tuesday, July 17, 2012

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!


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

Sunday, July 8, 2012

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.
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.
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

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.

Tuesday, July 3, 2012

Recovering from chemo treatment for breast cancer

I realize my typing is not the best, even though I do spell check I have miss- spelled words. When I previewed  this posting  some of the back ground words are white not pink.  Beats me LOL. I will blame it on the chemo brain/head. he he

I have discovered that there is not a lot of information on " how long it takes to recovery from treatment and how you should feel after you complete your chemo  treatments".  I am  realistic after my trip to Krogers last week - it takes time. But my legs hurt a lot and by the end of the day it is worse, climbing the stairs is excruciating and requires a pain pill or two. Which I hate to have to take. I do not want to turn into  a drug induced , inactive woman with white curly hair on top of my head. ( I think I am going to look like a q-tip) I want to be back to my active life style or at least able to walk a mile.
It has been way to hot to walk the dog. I am doing 30 in the door frame push-ups daily  and I walk up and down the stair at home many times a day.Also I am using the Tai Chi and other energy methods that I have learned. Cancer society has classes but they start at 7 PM - which I plan on returning to when my energy level is up.  ( I am tuckered out by 7 PM)  I am getting some exercise. The good thing   is It is impossible for me to sit still!

I am scouring the cancer sites " for how am I suppose to feel!"  A larger percentage of cancer patients  maintain jobs. How do they do this?   I am going to find this information and share it on this site. I feel this is very important. 

What I have learned.
1. There is no normal - you are living with cancer.
2. Depression is very common. ( I am not depressed:)
3. It takes months to recover!
4. Recovery times from chemotherapy vary with each person. Remember that chemo is a systemic treatment that will affect your entire body. You should plan on 1-3 months of recovery time per each standard dose of chemotherapy once your treatments are over.

From: "Matthews, Cheryl" <>
Date: June 22, 2012 3:05:47 PM EDT
To: <>
Subject: RE: Good News No Radiation - Blog update
Oh Susan……………….YOU DID IT!!!!  I couldn’t be happier!!!  Are there any side affects with the oral medication?  Are you up for something on Sunday, if we are in the shade?

Thanks for sharing your life ~ I learned so much from your strength, and I believe I will be able to handle difficult situations in my life better, because of you.  You are truly an inspiration Susan.  You know how we wonder sometimes why things happen the way they do?  In your case, your cancer may have been God’s plan, and other’s will learn great things from your experience.  Good things will come out of this, besides your own recovery, which I am so happy for!!!

Can’t wait for the beach!!  Let me know your thoughts about Sunday.

Lotsa Love,

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August 31 I am heading to the beach,  Panama Beach in Florida  with my friends and brother and brother-
in- law. I do not want to have sit at the pool , I want to be able to walk from the condo to the beach, walk on the beach and do my favorite thing,  to sit in my beach chair, read  a good book and chat with the people I  love. This is a celebration of my recovery. This is my short term plan! A good thing.

Recovering from chemo

Hi all, my partner is one of the lucky ones who found her cancer at stage 1c. She had her chemo almost 6 months ago but still feels bad fatigue. What makes it worst is she has a really good day & thinks she's going to feel better from then on & then the next day or two she's really tired again. Does this sound right for chemo? And I know this must be so normal but ever time she feels a little off she thinks she's sick again. There is one support group where we live & it's full. She's on the waiting list. Anything I can tell her? Thank you so much!

4 replies   

That is totally normal. She'll know that she is on her way to recovery when the good days out number the bad days. I'm 10 months post chemo and still have alot of bad days with fatigue and joint and bone pain. When I look back to 2 months ago, I am better today than months ago. Its a slow gradual process, but totally normal.

She might want to walk a little bit every day. That might help the fatigue. Also I would use a small kitchen timer to only take 1 hour naps and then force myself to get up and do something. It is very easy to just be a couch potato or lie in bed sleeping all day due to the fatigue. Some days it is overwhelming. If I didn't set the timer, I could have easily slept 4 hours.
Post Cancer Fatigue is a medically recognised syndrome and some percentage of people get it for quite a while after treatment ends. It's natural to think it's the cancer coming back but most times it isn't.
The fatigue is normal. If she had any type of surgery before her chemo that will also play a role. For a hysterectomy it may take a year or more and then add chemo on top of that, wham. I think I read somewhere for that every session of chemo there is a recovery time of like 1 month. Maybe someone else will know the answer. Best of wishes and just have her listen to her body, if she feels tired take a nap, we do our healing when we sleep.
Thank you all so much!!!!!