December 28, 2014 - Trials and Tribulations of Sunday

Sleeping, moods,  medicines, emotions, worrying about my husband....

Let's talk about sleeping - I can sleep but not when normal people do.  It's 3:30 AM on Monday and it is the 4th night that I am messed up.  I don't know why.  I just know I am up.  Is it the medicines, is it that everytime I close my eyes I hallucinate or is it that I am afraid I won't wake up?  What is it - it is all of the above.

Let's talk about moods - I sure have them..  Good, bad, terrible, wonderful - I am a crazy person

Let's talk about medicines - I hate them.  Changing the fentanyl patch - the worse.  The good thing - is it works, the bad thing is when it wears off and I have to change it - I get sick. Dry heaves, pain, dry heaves, pain so I just decide not to put it back on and start over - as Jeff says, not a good idea.  He is right but I don't want him to be.  

Let's talk about emotions - Am I becoming obsessed with this thing called CANCER.  I want to say NO and shout it from the roof but maybe I am.   How can one person have so many emotions in one day and start over the next with the same - it has to work itself out.

Let's talk worrying about my husband..I am no doubt about that.  I love him being here for me and I hate him being here for me - does that make any sense.  I don't know.  This weekend I had to get out of the house by myself because I think I was driving him crazy because I want to show I can do things for myself.  So I go out and do things, I come home and I am exhausted and tired and grumpy.  

Rambling is what I am doing now - trying to get through it all.  I want to stop hurting and I want this all to go away!

December 27, 2014 - It's been a month and 2 days

When I said earlier that the journey is just beginning - how true that is.  

So many things go through my mind and I want to place blame on something - just not sure what.  

Is it the disease, is it the medicine, is it just me - wow!  where do I start.

The medicines are wrecking havoc on me - whatever the side effects I have the opposite.  If it a side effect is energy - I sleep, if a side effect is sleeping - I am awake.  The last three days I took the chemo in the morning and fell asleep and was up to all hours of the night.  

I close my eyes and I am hallucinate - I am afraid I won't wake up.

This is a process.  

Today I was up very early and got myself dressed and went out by myself - a simple trip to Walmart that last 2 1/2 hours - I walked around by myself in solitude and just looked.  Of course, I did buy somethings but I was by myself with my own thoughts.  One minute I was fine - the next I was in tears.  

Then I went to get me some bagels - the one thing that seems to help me and I am able to keep down - came home, ate my bagel and then fell asleep for 3 hours.  I'm glad I slept a little but what will that do me tonight.  Who knows.  

The rest of the day I sat here read my cookbook, read Facebook, played games and sat.  I had so many things I wanted to do but nothing got done - there is always tomorrow.  

Today was a painful day - I figured out why - my patch needed to be changed - which will help for a few hours - my back already is not hurting and that will last consistently for a bit.  More pain meds tonight and maybe some more sleep.

Will keep you posted - follow my journey.  I am hoping it brings peace to me and to others.

Find strength in my cards and notes

The best addition to my collection

Life has a way of changing on a dime.  In the beginning of November, I was feeling kind of blah.  I had a slight fall in my kitchen and thought nothing of it.  During the next few days I was feeling some pain in my lower back area but really didn't think anything of it.  The pain continued so I was going to Dr. Zweiacher - my wonderful chiropractor and asked him to take a look - this was November November 6, 2014.  Had another appt on November 11th along with a massage and things didn't really improve - which to say the least surprised me because he fixes everything so I knew that something was different.  After that visit the pain got more and more and on November 18th I went to my family doctor, Dr. John Kehagis - the best in the world.  Dr. John sent me for x-rays that night and I was to come in for blood work the next morning which I did.  On Thursday, November 19th he asked me to come in for more blood work - no problem went right over and got it done.  

Day that will live in my mind for a long time - On November 25th I received a phone call that Dr. John wanted to see me at 3:15. No problem I would be there.   Nothing could have prepared me for that appointment - I thought it was important - but no, it was urgent.  At about 3:30 that afternoon I was diagnosed with multiple myeloma which is a cancer of the blood - attacking your bone marrow.  

So the journey is just beginning - since that day I have had many tests - full body scan, bone scan, bone marrow test,  pet scan, blood work and do I mean blood work - I don't thing there is any left but every time I go to the hematologist the blood keeps coming :).  

I was referred to Dr. Slease a hematologist oncologist at the Helen Graham Center and I have the best  - he is fabulous as well as Sandy his nurse and Erica his scheduler.  My first appointment was December 3rd and my life has not been the same.  His diagnosis was the same multiple myeloma.  I have since done much recess (so much so that I had to stop reading the internet for awhile because it scares me).  I have had the results checked and double checked and each time I go see him I ask him if this is a dream - his answer on Tuesday - no dream - I have you a short leash for awhile and we will see each other once or twice a week for a long time.  

The medicines I am taking are sometimes doing me worse - I can live with the disease but I can't live with the pain - it is excruciating at times and sometimes it just happens.  Good news - the disease has not damaged my kidneys bad news is that the disease has matasticized in my bones.  Since I am having a hard time with all the medicines the drug regiment changes each week to make me comfortable and help me.  I had the bone marrow test two weeks ago and waiting on results from Chromosone 17 which will help them decide which trial protocol for chemo I will be in.  We are being aggressive and the chemo will start in stages.  I started on Tuesday and will end the first round of this stage tomorrow - 4 days of 10 dexadrone pills each day and on Tuesday of next week I will have more added.  

Diagnosis is good just going to be a journey, hence the name of my blog This is just the beginning..  After the chemo I will have a stem cell transplant.  There is no cure for this disease but there is continuing research and continuing findings to help me and others.  This disease does not affect women a lot - mostly older men - so why me.  

I am not sure of the answer but I do know I am a fighter and have a great support team at home, with friends and at my great school.  I have been holding on to this for a month and why do I want to share.  I want to have a place I can write down my thoughts for others to see my journey and offer any help they can.  I also want to write down things so I know where this journey is taking me and hopefully help others. 

I want to share not for sympathy but for support for me at this point and hopefully for others in the future.  I have created a support board of all the cards and notes and special mementos that I have received just in a month and wow they are the best - it is right in my kitchen and will post once I figure it out.

I will post as things come up.  Feel free to question anything.  Feel free to offer advice.  

Help me win this fight and this journey - like I have said I don't know how long and I don't know where it will be but I am positive and know it will end up great

I am learning to ask for help - something I am not good at.  

I love texts, I love notes, I love cards - anything to let me know you care if you do.

I ask everyone to smile each day - it helps others but it also helps you.

Out for now - will post updates as I get them.