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!

The Phoenix Rises From The Ashes! Well Almost.

I felt like the Phoenix that rises from the ashes!  I came down with the flu the day after the yard sale and unlike most flu bugs I couldn't shake this one.  My family took turns being sick and this flu seemed to come and go.  Each child must have had it 2 or 3 times.  Soon my family was well but I continued to run a low-grade fever, have nausea and headaches.  I decided that in order to care for my family I had to take pain meds.  I have really tried to not take any extra medications.  After 4 weeks I decided that maybe if I act like I'm well I will be well and I went to yoga class.  I became nausea and dizzy.  I had to lay on my mat so that I wouldn't be sick.  The poor guy next to me was new and it seemed to give him permission to stop and lie down as well.  After I came home I spent the rest of the day in bed with a horrible migraine.  

My family all claimed there health back but I continued to suffer.  I chose not to get my labs, afraid that the illness would taint the results.  After 6 weeks I decided I had to go into the doctor.  My doctor was unavailable so I was scheduled to see Dr. G.  The Friday before my appointment I began having terrible pain like a vice was wrapped around my ribs and being squeezed   The pain shot up my back, neck and into my jaw.  It would sometimes run down my arms.  I suffered all weekend and then went to see the doctor.  She acknowledged my fever and rapid heartbeat.  Then she looked at my chart and saw that I have cancer.  She then shook her head at me and said "This is just cancer, there is nothing I can do for you."  I told her my whole family has had the flu.  She still insisted that it was only cancer.  She asked me if my house was clean or dirty.  "Dirty" I said, I've been sick for 7 weeks.  She told me my stomach problems were a result of stress due to cancer and I should take an antacid and get a maid.  She told me the fever, heart rate, aches and chills were just cancer and that there was nothing she could do for me.  I told her that if that was the case my whole family has cancer.  She sent me home with that advice and asked me to get my labs done.  She added on a few new ones like a thyroid test that I was sure I didn't need.

One Treatment Leads To Another

I went and got my labs done and they came back showing that my cancer markers continued to rise.  It also showed that I was anemic.  I began taking garlic and herbs for my flu and added in iron and other vitamins to try to help the anemia.  The pain had stopped and I was feeling a little better.  Then on the next Friday the pain started again.  I decided to semi-listen to Dr. G and take an antacid to see if it helped.  All I had was children's Maalox so I took it and it seemed to lessen the pain.  I guess I had taken too many pain pills during the flu and destroyed my stomach.  On Saturday morning I went to the store and picked up some prilosec and took it for the next 14 days.  That took the pain away and I began to feel like the Phoenix rising from the ashes.  I really felt good!  I thought I've done it!  But one thing leads to another and I began to develop a urinary tract infection.  I thought "I know how to deal with this!"  I started taking cranberry capsules, juice and drinking large amounts of water.  I also took an over the counter medication.  But unlike in the past nothing worked.  I found myself calling the doctor.  Mine again was out and they set me up with Dr. C.  I thought anyone but Dr. G please.  I went into my appointment that same day and Dr. C had left for the day.  There was a mix up on the schedule.  Who could see me?  Non other than Dr. G.  At least she ran a test so she could see it wasn't cancer.  She said it was very bad and was afraid it would get into my kidneys.  She gave me a strong antibiotic and told me I couldn't take any supplements while on it.  The druggist told me not to drive as it would make me dizzy.  I only had to take it for 3 days.  So I had a dizzy Easter Sunday but it was a nice one.  

Whats Next

Now you would think my troubles were over but from that came a slight yeast issue.  I was able to take care of it with probiotics.  My UTI started to come back so I drank lots of pure cranberry juice.  This time it went away.  I still felt week and started getting achy all over.  I was hoping that my red blood count had gone up.  I went for new labs.  They have just came back and while my cancer markers have once again started going down I have become more anemic.  My red blood cells continue to drop along with my Hemoglobin, hematocrit and neutrophil.  On the other hand my neutrophil bands are high and they now see nucleated RBC's in my blood.  My liver is also having issues again. Now that I can take my supplements again it will turn around.

What does all that mean?  It means that my bones are having trouble making enough red blood cells to move oxygen through my body.  I'm very anemic so I don't have a lot of energy and get out of breath often.  I haven't been able to exercise like I want to and have began using an oxygen bar to up my oxygen intake.  My white blood cells (neutrophil) are low.  

Hopefully I can find away to turn this around.  There are many situations that can cause this state.  Problems with the bone marrow such as Leukemia or Hemolytic anemia can be a cause.  While I'm not discounting my labs, they have not risen that high and I feel I can combat the situation.  A rare form of Hemolytic anemia runs in my family and I have already told my body that it cannot get that.  The treatment for it is in exact opposition to the treatments for cancer.  In cancer you try to raise the immune system and with Homiletic anemia you try to suppress the immune system.  

Time to Travel

So that is where I am at right now.  A little tired, week and achy.  However, my dear husband won a trip last year!  He has been patiently waiting to take me on it.  He planned it,  booked it  and it is coming up fast.  He so wants it to be a relaxing enjoyable trip.  So I'm going, and if the anemia means I have to lay around in the sun all day, I'll suffer through it!

We will be going to New Orleans and then on a seven day cruise.  It should be fun!
  So how can I stay healthy and eat right on my trip?  That was a big question for me!  No I can't do everything I do for myself at home and the ship wont let me take my juicer and organic veggies with me.  I am taking all my supplements and some meds in a handy little pack.  I also am taking some individual packs of amazing grass.  This can be mixed up with water and you have a green drink.  While not the same as fresh it will do for a few days.  I'm taking some instant organic oatmeal with flax,  I have some essential oils and a  small version of my bio mat.  Kris Carr who travels a lot has a little video presentation about traveling and keeping healthy.  Here is the link Quick and Easy Travel Tips!

P.S. I got a wheatgrass growing kit for Easter!  Can't wait to get back and start growing my own wheatgrass!

The yard sale went very well indeed!  

   I was just having a quiet yard sale in order to raise some funds.  It's also a great way to clean out my house! My good friend Carla, pushed me along and let other people know, I told my friends that live on my court because it was their idea in the first place.  Then the ward Relief Society Sisters found out about it and asked if I would let them have my yard sale as the months Relief Society project/meeting.  I was reluctant because I know that there are many other needy people in our ward.  They let me know how much they wanted to be a part of this and help. So I agreed.

   We all  know how it is when a bunch of Church Ladies sink their teeth into something? Well they did and stuff kept coming non-stop to my house.  My house and garage were over flowing and the women came and sorted and priced for two days, while other women baked goodies along with Crystal, Symber and their friends.  I missed my yoga classes but my body didn't know it with all the exercise I got.

  My little quiet garage sale became public property as one of the ladies contacted our little Natomas paper and it was put in the news.  Then another contacted Good Day Sacramento and they showed up with the news truck for a live interview!  Good Day Sacramento Clip My biggest regret with that is that I didn't have the presence of mind at that moment to thank everyone for all their hard work and generosity on my behalf.  So Thank You Everyone!!!

   I have to say people dropped off not only what they wanted to get rid of but their good stuff as well!  It was unmanageable!

   Even before the news, people were outside waiting at like 6am, then after the news they descended on us, we had a hard time getting everything out because of all the people.  Then they came and asked to see me-they told me of their family fighting with cancer and donated money, paid more than things were worth and asked for hugs from me.  This was friends, neighbors and strangers.

   It was overwhelming  and I had to go inside a few times to keep myself from shedding tears in front of everyone.  I kept thinking, "there are those more needy than me out there" and I know I was experiencing angels all around me.  I know no other way to express what happened but the ministering of angels!

   I can't say enough about the good people here, I hate to call the people that live by me neighbors because they are friends!  The women in my ward and stake are truly sisters! And the people in the community are so loving and giving!  Someone said to me that most people are generally good and giving, but I can't say enough about my community!  You are all so amazing!

    I don't know if I would have ever asked for donations of things or money.  I have always been very independent and try to work everything out on my own. That can be hard on the people around me.  I think that in these situations we learn so much more than we suffer. And we get to actually see how wonderful all the people around us are.  I am truly blessed to be surrounded with wonderful people!

   Both sides of my family have contributed what they can in donations to help me, that two has been amazing to me!  It has made it possible for me to do many alternative treatments and supplements while still provide my kids with school fees and lunch money and although we have cut back all of their needs have been met.  There were many donations and much overspending at the garage sale!  I'm still processing all of this!  I so want to give back to all of you!  One thing that I can do is to find a way to beat this cancer! I will keep up my blog and let you know what I'm doing and how things are going.  If you want to follow my journey my blog is curemycancernaturaly@blogspot.com.

 Those little girls made $60.00 selling hot coco and cookies.

   I now have my deductible, which is unbelievable and I will be able to do some of the alternative treatments!


   Just now my neighbor and friend came with some money from Tommy T's (comedy and dinner theater) they are donating $5 for anyone coming there that mentions my garage sale this last weekend and next weekend.

   Some items were put on craigslist and some on eBay, some were put back in my garage to sell on march 2nd, so I can't give you a total because as you see I don't have one yet.  But know that it has gone beyond my wildest expectations!  Thank you does not even cover it!  And yes I know that the men and children were also involved so me and my families gratitude extends to them as we'll!  In fact I had more than one child show me their stuff in the sale. : )

 Now the key is to put this money to good work!

Thank You!

 Love you all, you are truly angels!

 Jean

 I will be having one more garage sale on March 9th.  I would have posted this sooner but I have had a flu bug but am hopefully on the mend.  I haven't done labs or anything because I haven't felt like going out.  I will keep you posted on what and how I am doing.  Thanks again!

Trust, have faith, know the door is open, move through!

Jonathan Ellerby, PhD

Its a shiny New Year, 2013!  

The New Year celebration brought change for my family.  My two oldest attended a New Year's Eve dance with friends followed by IHOP and then games at my house until the wee hours of the morning. 
The younger 3 stayed and enjoyed our usual family fun with platters of finger foods, sparkling cider and poppers.  We enjoyed games a movie and lots of midnight screaming and laughter.  They were not the loudest in the neighborhood but tried to be.  I remember the days that my husband and I went out to dances or to hang out with friends on New Year's, then after having children it became a family celebration.

Moments of Change 

Just as a new year comes and goes as if we are starting a new chapter, our lives are filled with real moments of change.  They can happen at any time of the year.  Sometimes these moments are planed, while others are not.  Some are joyful, while others are an unexpected shock.  When those moments happen, we can choose to stand still and let life move around us, just caught up in the wave with little or no control over the outcome. On the other hand, we can choose to look at it as if we hit black ice and are caught in a skid.  As we start to slide, we must gently turn our steering wheel in the same direction, slow down by lifting our foot off the accelerator completely and head for areas of traction.  Like life, black ice is usually patchy, so if we are patient our life like our tires should find areas of traction. Rarely are our lives equipped with ABS brakes, we usually have to do the work for ourself or crash and burn.  If we end up going off the road we must try to steer into things that will cause the minimum amount of damage.  Then we can pick ourself up and continue our journey.

Early in 2012 my life hit the black ice and started skidding.  It was a year where I had to trust and have faith.  My family and I looked for doors, trusted our decisions and moved through them.  There have been lots of ups, downs, some loss, but lots of growth.  I have learned so much about health and about myself.  I have become closer to family and friends.  So I can't say that it's been a bad year, in fact some studies say that cancer is present in your body for up to 10 years before it forms a lump.  Looking at it like that it becomes a good year because I found it and could begin my fight. 

So as you go about your life don't allow others to set limitations on what you can accomplish.  Don't beat yourself up because you are not perfect all of the time.  Allow yourself to move forward, each step, whether its a crawl or a leap; it will help you reach a place that may seem beyond imagination from where you are standing.  I believe all things are possible!

I find that the one person who can put the most limitations on us is ourself.  Wouldn't it be great if we could wipe out doubt and fear?  If we can trust, have faith and step forward, we can and will do great things in 2013!

Update on me

I started diagnostic testing to see what progress I have made fighting the cancer.  I had 3 MRIs.  They came back a mixed bag.  The MRI of my lower back showed that all the original cancer lesions had reduced in size but there are a few new ones.  The MRI of my upper back (Thorasic) also showed that the original leasions have decreased in size.  However there are innumerable new leasions in this area.  It also showed that there are spots in my liver that could be cysts; they warranted further investigation.  The MRI of my breasts showed that the tumors have gotten smaller and the spot on my left breast is no longer there.  Yippee!!!

These tests led to an ultrasound on December 31st.  The ultra sound showed that I have several cysts in my liver and a spot in my kidney. That doesn't mean that there is cancer.   An MRI of the area has been suggested to ascertain the true nature of the problem and see if further treatment is necessary.

I had a sudden jump in my cancer markers along with bad test results on my kidney and liver.   The Doctors in Reno asked me to come back for another round of treatment.  Which is cost prohibitive for me.  No one knew why it had jumped.  I began doubling up on some supplements but the test results worsened.  Soon after I found out that one of my supplements (Protandim) had been recalled so I stopped taking it.  I went on a juice fast for seven days combined with cleanses.  I then went to only raw foods, fresh juice and cleanses.  I also began taking Kidney Tea.  My liver and kidney functions tested in the normal range.  However my cancer markers are higher than they have ever been and continued to rise. 

I found out that when my numbers went up and while they were rising I was on the recalled Protandim.  I called the company to get more details about the problem.  It seems a 3rd party suppler of turmeric had sold them product contaminated with carbon and iron.  Most likely carbon will cause no ill effects and as for the iron, it depends on what kind of iron and how large the dose.  While there is a correlation and a possibility, there is no conclusive evidence at this time that the Protandim caused my numbers to rise. 

Some people have stopped taking Protandim, and that is a shame, since I feel it has been very beneficial to me.  This week I received a new uncontaminated shipment of protandim. It's been a long time since I have taken any.   I'm taking it, and again will track my cancer markers and see if it has an effect.  I'm looking for results and will post them for you in a future blog!

So while I haven't had bad news, I'm not cancer free and I'm still left with lots of work to do this year. 

I hope for nothing but positive changes in the New Year and that goes for all of us.  I also know that  we can turn any situation upside down and make it for good, even if it is a hard one.  I want you to know that, in the words of my friend Erin Pressley, "You Can Do Hard Things"!

Thanks for all your support and prayers!
Happy New Year Everyone!