I'm Still Here Living and Loving Life

Yes, I'm still here!

Me, four of five sisters, Bitter Blue (the dog) and my son Ashton.  We are saying Good-by to Ashton as he leaves to spend two years in Japan on a mission.
October 9, 2013

I know its been a while and I have no excuse.  So I will catch you up with the last few months.  I am quite ashamed that I haven't blogged in so long.  I lost a friend and fellow cancer blogger.  She not only blogged from her hospital bed she blogged after her death.  Her blogs are inspiring and up lifting.  If you want a good read you can find her blog at "My Unexpected Path" .

Pleurisy and Pain

In February I got the flu and things went down hill from there. I developed pleurisy which no one seemed to be able to diagnose. I had to travel to a cancer center in Arizona in order to be properly diagnosed. Pleurisy which sometimes happens to breast cancer patients "is an inflammation of the pleura, which is the moist, double-layered membrane that surrounds the lungs and lines the rib cage. The condition can make breathing extremely painful. Sometimes it is associated with another condition called pleural effusion, in which excess fluid fills the area between the membrane's layers."(Web M.D.)


I had fluid build up and that cased my ribs to bruise and difficulty breathing.  I was in extreme pain.   I couldn't walk downstairs in my home without stopping to rest and catch my breath.   I was prescribed pain medication but it didn't touch the pain.  Finally my pain reached the unbearable point.  I was able to see someone who was a pain expert and told me the medication I was taking was like giving me M&Ms. He prescribed morphine with another strong medication for break out pain.  Yes, I was "drugged!"

Anemia

Then my hemoglobin dropped and I started to develop bruises all over my body. I was told by a nurse to go immediately to the hospital. She said she would not let me off the phone until I committed to go.  I told her I would, but as soon as I was off the phone I went to bed.  The next day the cancer center canceled my appointment and told me I must go to the hospital before they would allow me to travel to see them.  I guess I'm a little stubborn, so with that threat I got in my car and drove myself to the hospital thinking it was silly and I should just go to bed since I felt tired. The next thing I knew I was being admitted to the hospital and receiving a blood transfusion.  I was and still am anemic. The transfusion saved my life.  A big Thank you for those who donate blood!


So what are the causes of anemia and what caused mine?  That has been a big question for me.  It can be hard to find a cause as there are over 400 types of anemia.  One of the most common is vitamin deficiency such as iron or B12.  It can also be blood loss from something like an ulcer or faulty red blood cells.   I have very high levels of the vitamins I need.  After a scope and colonoscopy we found no bleeding.  So what is it?   After lots of tests over the last several months, we have finally established what is wrong with my hemoglobin.  My bones are producing a large amount of red blood cells but my liver is not producing the proper amount of the binding agent (hepcidin) that binds the iron to the red blood cells.  Therefore, I am not getting the oxygen distributed in my body and my red blood cells are not maturing.

Iron, like sugar, feeds cancer.  So there is some thought that my body may be trying to protect itself by lowering the ability of the iron to get to the cancer cells.  It's just my oncologist's theory.

Anyway, I had weekly blood tests to see if I needed a transfusion. Thankfully, although my hemoglobin is low, it has been staying steady so I am now on the once a month blood test schedule.

I also stopped my pain medication and ended up in the hospital.  I had to learn how to manage my pain. They wanted me to be on a constant dose of morphine.  I again went off the pain medication, but now I know to take some when my pain level reaches a 5 or 6 out of 10 points so I don't end up in the hospital.  That was no fun.

The Doctors in Arizona

Going to the clinic in Arizona was an experience.  The people were very nice but it was cancer all the time.  I was at my wits end and losing weight at an alarming rate.  Sometimes as much as 5lbs in a week.  I had been throwing up daily and eating very little.  The silver lining is the weight loss.  I am happy about how I look.

The doctors ran all the usual tests and then a group of them (I think 5) met with me and my husband.  They started off informing us that there is no cure for me and anyone that says otherwise is lying.  They then told my husband that the window of opportunity for me was closing, that it was a matter of more time or less time.  If I didn't do what they wanted then it would be less time until my death.  Suddenly, I had not only the doctors but my husband urging me to take and do the things I was against.  It was a lonely place to sit.  I could see how hard it was on my husband so I gave in a little and said I would try their way for 3 months.  This would give me a good idea of their method.

Loss of Supplements

The next thing I knew I was being told I had to quit taking most of my supplements in order to take the drug tamoxifen.  On the tamoxifen I continued to lose wait and be very sick.  In fact on the tamoxifen I was sicker.  My cancer markers did go down but I was not living.  I feel like I missed the whole summer.  It bothered me to see my friends take their children to the beach, hiking and many activities while mine watched me lay in bed.  I had had it!  I told my family that quality of life is more important and that I wanted to live, not lay in bed!

I didn't make it to 3 months.  I was off the tamoxifen, but I did discover some mushroom extracts and other herbs that have helped.  I rarely need pain medication.  I'll try to blog about them after Christmas.

Live, Love and Fully Participate In Today!

Right now I am doing much better.  I'm not sick and love the weight loss.  I'm still anemic and have a low platelet count but I'm working on that.  I have been able to spend quality time with my family.  I have more energy, but I am trying to get my children to be more independent.  I think it is good for them to know that they don't have to rely on me--that they are strong and capable.  I plan on being here for the long term, but don't we all want our children to know that they can take care of themselves and accomplish anything they set their mind too?

I love this healing story out of Healing Journeys November Newsletter.  Stephanie Sugars has been living her last days for 22 years!    8000 Last Days by Stephanie Sugars.

My Vow!

One thing I vow to do different than Stephanie Sugars is to not think of my days as "Last Days"  each day is a new day, a beautiful day in a very blessed life!  Very few of us know what day will be our "Last Day" so I say live, love and fully participate in this day!  The day you are living in right now.  Remember the good times and plan for some more but live right now because this is where you are!