Radiation therapy- a month of sadistic tourture

From the Institute of Image guided radio-therapy:

Radiation Therapy is cancer’s worst nightmare. It uses high-energy X-rays or particles to change the genetic makeup of these cells and take advantage of their rapid growth cycle. So now when they try to multiply, they die. The whole goal of radiation therapy is to damage as many cancer cells as possible, while limiting harm to healthy tissue. Since healthy cells grow and divide much slower than cancer cells, normal tissues have more time to recover and are not as adversely affected by radiation. The majority of normal cells can recover from the effects of radiation and function properly. The method used to deliver radiation depends on the treatment goal and what part of the body is involved. Some methods allow the radiation to penetrate the body more deeply, while other methods are better suited to treat smaller or larger areas. Each treatment plan is tailored to each individual patient. Radiation therapy may be used alone, or combined with surgery and/or chemotherapy.

Radiation therapy, called RADS among those of us who have endured it, is often presented as easy compared to Chemo. Some ladies have an easier time of it but most whom I have chatted with felt it was hell on earth. This is especially true for fair skinned woman.

You have to go every day and climb into a giant machine that has been programed to send beams to and area on your chest that the doctor has deemed at risk for cancer cells spreading. For me, that meant my entire right chest wall, my arm pit and up past my collar bone.  The beams themselves are painless, but after about two weeks, my fair skin looked like I had been scalded.  By the 30th treatment my skin was purple and it hurt to move. I was nauseous from pain and blistered severely.

In the weeks to follow I continued to blistered and peel. I had to sleep on my back and if I turned in my sleep the pain of rubbing a fresh burn would wake me. I was prescribed the same burn cream that 3rd degree burn patients are given. I wondered just how many layers could peel off before I was going to see bone. The flip side was, looking at that mess, I knew cancer could not have lived through that. Nothing could, and I marveled at my own  capacity to recover from so much  trauma.

Since Radiation therapy ended I have been in physical therapy. The skin and muscle were burned enough that they retracted, and everyday I have exercises that are helping regain my strength and range of motion. Like I said before, it is a long road out of purgatory.

Just so ya know. Though I may have been beat down by chemo and radiation, a week after I finished treatment I flew to Tennessee to see my lovely daughter and we hiked up a mountain to a beautiful waterfall. Fuck Cancer! ( insert image of  bird here).

Tomorrow: What else I am  doing to insure my continued wellness

Chemo Brain- What is it?

 Here is a good clinical definition:

By Mayo Clinic staff
Chemo brain is a common term used by cancer survivors to describe thinking and memory problems that can occur after cancer treatment. Chemo brain can also be called chemo fog, cognitive changes or cognitive dysfunction.
Though chemo brain is a widely used term, it's misleading. It's not yet clear that chemotherapy is the cause of concentration and memory problems in cancer survivors. And many cancer survivors with memory problems still score well on cognitive tests, leaving doctors wondering whether chemo brain really exists.
Despite the many questions, it's clear that the memory problems commonly called chemo brain can be a frustrating and debilitating side effect of cancer and its treatment. More study is needed to understand this condition.

Signs and symptoms of chemo brain may include:

Being unusually disorganized

Confusion

Difficulty concentrating

Difficulty finding the right word

Difficulty learning new skills

Difficulty multitasking

Fatigue

Feeling of mental fogginess

Short attention span

Short-term memory problems

Taking longer than usual to complete routine tasks

Trouble with verbal memory, such as remembering a conversation

Trouble with visual memory, such as recalling an image or list of words

Signs and symptoms of cognitive or memory problems vary from person to person and are typically temporary, often subsiding within two years of completion of cancer treatment.

Some addtional things I experienced include the following:

Black outs during active chemo and for a few days after, repeating myself because I could not remember what I had said previously, and forgetting conversations I had with family. I also experienced extreme dizziness and found my face on the cement sidewalk outside my house, without being able to recall how I fell. I could not remember my birthday, my age,  the name of my doctor, the name of the clinic, nor the names of any one I met while high on chemo. I also got lost driving more than once in my home town.

It's been 6 months since my last chemo and my brain if just now waking up. I still struggle with spacial and short term memory, but my focus is much improved. When I asked the oncology staff why I was not told about these side effects the response was, because not everyone gets them. I was aghast that I was not better prepared for such extreme side effects. Knowing  that I could continue to have symptoms up to two years has me a little freaked out,  but everyday I work on improving my brain.

People often think that once a patient is finished with the poison hell called chemo, and there is no other cancer detected, that the ordeal is over. I am here to tell you that is not true. It is a long road out of purgatory, and the exit doors are aflame. They make you stand in them for about 30 days before they let you out.

Tomorrow: Radiation therapy, a month of sadistic torture

No hair, no boobs, where is my feminine?

I think people are naturally curious. Most are also very gracious. When my hair was gone, and I would run into people who did not know I was on chemo, not one person dared mention my hair loss. I think for some, it was just to much reality, for others it elicited a fear that many woman have. The fear  that they themselves  may one day have to endure the side effects of cancer treatment.  One devistating side affect  is hair loss, another is often the loss of one or both breasts.

I remember getting out of the shower bald and breastless one day. I caught a glimpse of myself in the misty mirror. For just a moment I could see myself as a ghost. It was eerie and I said out loud " Holy shit Mer, you are beat up. " I replied to the ghost in the mirror " but I'm still standing mother fucker!"

I realized that I had picked up the sailor language of my late brother who recently passed away from cancer. I laughed out loud and thanked him for inspiring toughness in me as a child sibling. I also notice just how much I looked like him, without my breasts and hair.

I have always been a bit of a tom boy but this day, I felt like I was genderless. Just some creature transitioning through this world. I realized that much of what makes a woman feel feminine had been taken from me by the beast. Cancer has a way of stripping you down to your essence, which I found has very little to do with hair and boobs. Loosing my hair and breasts was humbling beyond words. No one ever thinks that such extreme things will happen to them and when you are wrong,  it is indeed traumatizing.

Trauma changes your perspective and deepens your thoughts about the way you spend  your life.  I have always been  a nurturer and have mothered many kids in addition to my own. My favorite role in life is that of mother. The thought of my children being orphans  strikes a raw nerve in me that makes me cry every time I think of it. It also motivates me to work hard at wellness. It was key in my decision to take a sabbatical from work and try to tweak out a life that is more in keeping with my feminine motherly instincts. They say that when a person looses one of their senses, that the others perk up and make up for it. I dare say, that loosing some of the aspects of my femininity to the beast, has most definitely perked my mothering instincts. I have also learned that darkness is always balanced with light. This, I love.



Tomorrow: The side affect no one talks about, "chemo brain"

Loosing my hair from Chemo- a spiritual epiphany

The first time I did chemo I was very lucky to not use my hair. I felt a bit smug like I had beat the odds.  Unfortunately when I had to do chemo for the second time, it was with a much more toxic cocktail and I was told without a doubt I would loose my hair. I tried to prepare the best I could with a nice collection of hats and scarves, and even a  piece of fake bangs to clip on to the front of a scarf. I thought I was as prepared as I could be, but nothing prepared me for what happened the day it came out.

I woke up to a pillow full of long blond strands. I was afraid to go look in the mirror and it took me some time to get up the courage. I was spotty with clumps still in tact but when I would  put my hand in my hair it would come away full. Looking every bit as hideous as I had imagined, I stood there stunned, suddenly full of my reality.

The wind was blowing outside so I decided to just go outside and shake my head. I went to one of my gardens where a garden angel looks after my plantings. She has hands that cup and I put a huge glob of hair there for the birds to retrieve and use for nests. I thought, something good has to come out of this very humbling experience. I did cry, and asked the universe to help me understand why this was happening to me. I felt I had already had my share of stress and hard times.

It was then that a puff of air blew a good portion of my hair into the wind. I watched it go and a profound thought came to me. If I could let go of past hurts and resentments, it would go a long way towards my total healing. Suddenly I wanted the hair off. I started rubbing my head with all my might and each time I looked up there was hair flying away. With each glance I imagined all kinds of things leaving me, hate, grudges, past indiscretions. All gone with the wind. I returned to the house bald, but with an unburdened spirit.

 I knew in an instant that I had been given a gift. Most people never have the reason to look deeply into their own soul. Breast cancer makes you do that.

Common chemo therapy drugs for breast cancer

When I was first diagnosed with breast cancer I was suddenly faced with making some very serious decisions about which treatments I would select. The amount of information was very overwhelming and most of it written in giant scientific terms that made it hard to understand. This post will simplify the common drugs and discuss the decision making process. Most of them are called by the first initial of their name and will be administered in a variety of cocktails ( more than one at once).
Here is a list:
A: Adriamycin
C: Cytoxin
E: Ellence
F: Flurouracil
M: Methotrexate
T: Taxane

Common cocktails are: AC, TC, TAC, AT, CAF, CMF, EC, FEC

The reason these are used in combos is because each one combats cancer in a different way, and it is believed wise to hit it from several approaches at once. Most times the decision of which cocktail has two factors. The effectiveness of that cocktail, with your type of diagnosis, are weighed against the side effects. Each drug has its own set of dangers, so it is not an easy decision. I would encourage anyone facing these decisions to look up each drug and make some notes. Spend some time thinking about it before you just commit. For example, Adriamycin is known for is high risk of heart damage, yet it is highly effective.

The first time I did chemo I chose CMF mainly based on the fact that this combo is a bit milder than the others and with stage one, I figured good enough. Plus, the chances of loosing my hair with this combo was significantly less that with the others. I was scared to death of loosing my hair.

When I had a second recurrence I was really terrified that the first chemo had not worked and told the oncologist to pull out the big cannons. I decided on the Taxotere and Cytoxin combo. About the strongest combo you can get.
I almost died of the side effects after the first dose, and I did loose my hair.

Tomorrow: I will write about what it was like when I lost my hair. That experience held a secret gift.

I always thought If I got breast cancer I would just get a mastectomy.

When I was diagnosed in January of 2009 with Invasive Lobular breast cancer I did what I had always said I would. I had a double mastectomy. I was very naive and thought that would be the end of breast cancer risk for me.  It was a tall price to pay but the peace of mind it gave me was worth it. I did not do chemo or radiation as my tumor was only 1 centimeter in size. I improved my diet, my life and joined a forum that focused on natural means of cancer prevention. I was a good student and had very good self discipline. I felt lucky, and also a bit smug, like I had dodged a bullet. Recurrence rates were said to be about 1% after a double mastectomy. I knew it would not happen to me.

Much to my shock, 11 months later I found a lump in my near arm pit. A biopsy revealed that it was indeed a local recurrence. I was told that as much as they try, the surgeons never get 100% of the breast tissue during a mastectomy. It was a hard pill to swallow, looking at my chest which was now concave with huge scars. This time the cancer was less than one centimeter. I had it surgically removed and did 4 courses of Chemo. I opted out of radiation as I thought with this tiny tumor, radiation might be over kill. I was trying to take care of the cancer with as little damage to the rest of me as possible.

8 months later my worst nightmare came true when I found another lump hiding in my arm pit.

The reason I decided to write about this is because I don't want anyone else to be as naive as I was when first diagnosed. A mastectomy certainly does not guarantee that you will not have a recurrence. You must stay diligent and do exams on yourself daily. I have two doctors who did not find my lumps during examinations. Neither did they show up on mammogram or thermagram.

The best way to tell if your breasts have a problem? Check um!



Tomorrow: There are several types of chemo for breast cancer. How I made my decisions.

What are The Stages of Breast Cancer

Today I will write in simple terms what the five main stages of breast cancer are as defined by the National Breast Cancer Foundation. (Stages II and III are divided into  sub catagories of A & B depending on what is found).

One goal I have for this blog is to take hoytie-toytie scientific language and put it in simple terms for the average person to easily read and understand.

The following is a simplified list, and I should add, that among the oncology world you will find doctors who may interpret your findings slightly different and therefore may stage your cancer  slightly differently from an other's interpretation. It is not always clear cut, especially if you fall right at one of the cut off points. I have included survival rates as it is one of the first questions  I had. I also want you to know that a diagnosis of breast cancer, even in late stage, is not a death sentance. There are pleanty of things that you can do to help yourself. This blog is about survival and how to "beat back the beast."

Stage 0: Carcinoma In Situ, two types: Ductal and Lobular
Ductal Carcinoma In Situ is very early cancer, but if left untreated it can spread.
Lobular carcinoma In Situ is not yet cancer but indicates  an increased risk of developing cancer
Survival is almost 100% for In Situ Carcinomas.

Stage I: Early cancer that is less than two centimeters in size and has not spread to lymph nodes or surrounding tissues. Survival rate is 98%.

Stage II:  IIa means that  the cancer is still less than two centimeters and has spread to three or less lymph nodes under the arm or means that the cancer has grown past two centimeters (but is still less than five) and has not spread to the lymph nodes under the arm.
                IIb means that the cancer is between two and five centimeters and has spread to lymph nodes or  the cancer is larger than five centimeters and has not spread to the lymph nodes.
Survival rate for II a & b is 88%.

Stage III: IIIa means the cancer is between two and five centimeters and has spread to at up to nine lymph nodes. Survival rate for IIIa is 56%.
                IIIb means cancer has spread to other tissues near the breast such as skin, ribs, muscles or lymph nodes beyond the arm pit area. Survival rate for IIIb is 49%

Stage IV: This means that cancer has spread to other organs such as liver, lungs, bones or lymph nodes above the collar bone. Survival rate for IV is 16 %.

Tomorrow's topic: Will a mastectomey get rid of Breast Cancer?

Is stage one breast cancer " no big deal?"

Stage one breast cancer, no big deal right? Caught early, chances of survival are very good. What they don't tell you is the years that follow are going to be very challenging, physically, mentally and emotionally. I am three years out from my original diagnosis of Invasive Lobular carcinoma.

There are several types of breast cancer, this is one of them. What began with a one centimeter lump on my right breast, turned into a 3 year nightmare that almost went unchecked (and would have if I had listen to the first doctor I saw about it.)

I have a story to tell about my experiences and what I have learned. My hope is that I can help others who are faced with this avoid the mistakes that I made through ignorance, misguided advise from professionals and allowing my own fear to run my thoughts.

I will be posting a plethora of topics so check back daily if you want to learn from a real life person who has lived the experience. In the mean time, if you feel a lump get it checked!

Tomorrow: What are the stages of breast cancer and what do they mean?

PTSD what is it?

Posttraumatic Stress Disorder-a snapshot put in layman's terms

For those of you not familiar, there is a book that therapists use to make a diagnosis called The Diagnostic and Statistical Manual of Mental Disorders that is published by the American Psychiatric Association.

The manual outlines criteria for PTSD in the following general ways.

A. A person has been exposed to a traumatic event that  involved threat of death and involved intense fear.
B.The traumatic event is persistently reexperienced by recall, dreams, feelings, distress when exposed to cues that remind  the person of the event.
C. Persistent avoidance of stimuli associated with the trauma
D.Persistent new increase in arousal including 2 or more of the following-difficulty sleeping, irritability/anger, difficulty concentrating, hyper vigilance, and aggravated startle response.
E. Duration of B,C, D for more than a month
F. The disturbance causes clinically significant distress or impairment of functioning

Breast cancer and PTSD

Breast cancer is a wicked sycophant that tries to suck the life out of its host. It's best friend and companion is fear, which can be incredible debilitating. Fear actually fuels breast cancer by keeping the immune system busy while cancer does its ugly little mating dance. Only if you have heard your name  and the word cancer in  the same sentence can you really grasp this concept. Hearing that you have cancer is a poisonous mortality pie in the face. Suddenly you realize that nothing is safe, nor was it ever. Death becomes a real possibility and it changes the way you view everything.

Breast Cancer

Stage one breast cancer, no big deal right? Caught early, chances of survival are very good. What they don't tell you is the years that follow are going to be very challenging, physically, mentally and emotionally. I am three years out from my original diagnosis of Invasive Lobular carcinoma.

There are several types of breast cancer, this is one of them. What began with a one centimeter lump on my right breast, turned into a 3 year nightmare that almost went unchecked (and would have if I had listen to the first doctor I saw about it.)

I have a story to tell about my experiences and what I have learned. My hope is that I can help others who are faced with this avoid the mistakes that I made through ignorance, misguided advise from professionals and allowing my own fear to run my thoughts

Breast cancer sucks!

In January of 2009 I heard he words that no woman wants to hear. It's breast cancer. The next three years were an unwelcome education on a topic I did not want to know about. My plan with this blog is to start documenting the things I do and learn everyday as I run like hell away from this nasty, sneaky-ass disease.
If you or someone you love is newly diagnosed and you are looking for answers, information and a place to ask questions from someone who has been there/ done that, you have come to the right place. Chances are your questions are my questions that have been answered through a variety of means.

I am more than willing to share my knowledge in hopes that something good can come out of one of the most difficult things I have ever faced down.

I will warn you however, this blog is my outlet and sometimes I curse, cry and rant.