My Chronic Life

I met Goodies for Mom on the Mom Bloggers Club when she wrote about needing people who have had experience with any type of blood cancer to write a post about it. Since I’ve had the unfortunate situation happen to my sister I knew I wanted to do anything I could to help out.

My sister was only 32 when she was diagnosed with Leukemia and within 6 months she was gone. She had a 9 month old little boy, a 3 year old little girl, a husband, Mom, 2 sisters, nieces, nephews and cousins, aunts and uncles and lots and lots of friends. She was a joy to be around. She was funny and loving. She was brave and angry. She was full of hope and was told she’d live to be a grandmother. She lost all of her hair and was still beautiful. She couldn’t wait to exercise and run again when her treatments were over. She loved her children with all of her heart.

I was her stem cell donor. I was pregnant when she was diagnosed but her doctors said it was best to wait for me to have my baby and donate my bone marrow. Then when it was time for the transplant, the insurance wouldn’t pay, the doctors thought she’d be better off with stem cells instead of marrow and so it went.

Three weeks after enduring the strong chemotherapy and getting my stem cells she was gone. She had complained the night before that her stomach hurt her so much. For the first time she accepted pain medicine. The next morning, My Mom who stayed with her in the hospital gave her a sponge bath because she was too weak to shower. My sister didn’t remember much about the night before.

Her husband came to see her and my Mom took a shower. She heard my brother-in-law screaming. She got out of the shower to see nurses and doctors trying to revive my sister. They put her on life support but there was no brain waves, no sign of life. She was taken off that day.

Today with the advances made by the Leukemia and Lymphoma Society she may have been cured or given more time. I know that her insurance company wouldn’t have declared the bone marrow treatment as “experimental”.

There are prizes listed at Goodies for Moms for those that blog about this cause, but the best prize of all would be a cure for all types of blood cancers including leukemia, lymphoma, Hodgkin’s disease and myeloma.

Visit Friends of Heroes National Light the Night Team and how you can help raise money for a cure, for education, for support and for awareness. The money raised will go to the Leukemia and Lymphoma Society to help them attain these goals.

Spread the word!

Randy Pausch died today, July 25th from Pancreatic Cancer but his love for life, his inspirational beliefs and his love of family and friends will last just as his “Last Lecture” will. Mr. Pausch is survived by his wife Jai and his three children, Chloe, Dylan and Logan. He was diagnosed with cancer in September of 2006 and died at the age of 47.

I know that by watching his “Last Lecture” that I should focus on his life and the zest he had for all of it, even educating people about his treatment and maintaining an online update of chemotherapy and the various treatments he went through. He kept a “box score” which showed his blood pressure, tumor marker and creatine numbers.

Some of the highlights of the Last Lecture are the following:

• Live out your childhood dreams
• Help other live out theirs
• Have fun every day
• Maintain your childlike wonder
• Never give up
• Be an earnest person
• “The best of the gold’s at the bottoms of barrels of crap.”
• Have friends who can tell you the truth about yourself and listen to them
• Be thankful to those that help you
• “Don’t complain. Just work harder”
• Find the good in everyone

Randy Pausch’s “Last Lecture: Achieving Your Childhood Dreams” was held at Carnegie Mellon University on September 18, 2007. It was actually given for his children not for the audience. It is touching, humorous and well worth watching over and over. The Last Lecture is also in book form.

Please visit Randy Pausch Tribute Page sponsored by First Giving to help raise money for Pancreatic Cancer research.

And here is the video for you to see over and over:

Living in Florida, taking multiple medications, having fair skin and a family history of skin cancer all have me using sun block and trying to stay out of the sun as much as I can. Add to that having a diagnosis of Myasthenia Gravis, which heat can exacerbate, you’ll usually find me with with a big straw hat, going into and out of air conditioned cars, stores, homes, etc.

I’ve been using a spray sunscreen so it saves some time with applying it. Then I have a cream that I use on my face. I already have Rosacea so I really have to be careful getting any sun on my face. I look like I don’t live in Florida being so pale but that’s what I have to do.

I’m happy to be over getting pimples on top of the other skin problems I have. I remember being a young woman in my teens and twenties and not only having acne on my face but on my neck and upper back. That was much worse than being pale. I found a great dermatologist though who helped me with the best acne treatment for me. It took some time but soon I was acne free.

Some people view not having a tan as a missing out on a beauty routine but I think that I’d rather not worry about skin cancer than try to look good.

There is a difference between brain fog and memory loss. Brain Fog is related to chronic illnesses such as Fibromyalgia, Sjogren’s Syndrome, ME/CFS, etc. It’s also related to lack of minerals or vitamins, some prescription medications and some forms of chemotherapy.

Brain Fog feels like you are confused and forgetful. You may not be able to do remember words easily. You may feel “spaced out” or that you’re in the clouds. You have difficulty keeping on task. Simple tasks that you were able to do easily such as add numbers become difficult. With Brain Fog or because of it you may feel sad or depressed.

Memory Loss is permanent and progressively gets worse. One day you can’t remember where your keys are or what a KVM is. As your memory loss gets worse you can’t remember your own family member’s names or the directions to your home. You begin to lose cognitive functioning of all kinds. Memory Loss is often related to Alzheimer’s Disease, Alcoholism, Dementia, Stroke, HIV, Brain Tumors, etc. This is a much more serious problem.

If you have any type of problems with your memory please see a physician.

The main goal of Colorectal Cancer Awareness month is to educate the public about early detection through the use of screening.

According to the The American Academy of Family Physicians, beginning at the age of 50 there are various types of screening types used:

• Fecal occult blood testing every year
• Flexible sigmoidoscopy every 5 years
• Fecal occult blood testing every year plus flexible sigmoidoscopy every 5 years
• Double-contrast barium enema every 5 years
• Colonoscopy every 10 years

There are some risk factors that may cause the need for screenings to be done more regularly. If you have a family history of colorectal cancer, if you’ve had colorectal cancer in the past, if you have either Chron’s Disease or Ulcerative Colitis (both are forms of Inflammatory Bowl Disease), or if you’ve had polyps found in previous screenings.

There are syndromes that are inherited that increase your risk also. They are:

• Familial adenomatous polyposis (FAP)
• Hereditary non-polyposis colon cancer (HNPCC)
• Peutz-Jeghers syndrome

The American Cancer Society names some links to Colorectal Cancer. These are:

• Diets high in red meat and processed meat
• Lack of exercise
• Obesity
• Smoking
• Heavy Alcohol Use
• Type 2 Diabetes

Please speak to you doctor about your risks, any concerns you may have about symptoms such as blood in your stool, constipation, changes in your bowel movements, etc. This is not a pleasant thing to talk about but it can save your life. Your doctor has heard these terms before! Don’t let embarrasament take away your chance for a long and healthy life.

There may come a time in the progression of your illness when you are told that nothing else can be done, that your body is unable to fight any more and that there are no treatment options left.

When we face a life-threatening illness we may go through the stages of grief outlined in the famous book On Death and Dying by Elizabeth Kubler-Ross.

I will write about each stage in a single post in the days ahead. People who are diagnosed with a chronic illness may also go through these stages as this type of diagnosis causes great changes in their lives.

Some people may go into depression immediately. They will be so saddened to learn that they are hit by something unexpected. It can cause them to go out to purchase a burial policy because they feel that they want to give up and die.

My upcoming posts will focus on how to avoid this and reach acceptance of your illness with a positive attitude and even hopefully gratitude.