Will You Join Me?

If someone were to ask me Christmas of 2013 where I would be in three years, it most definitely would not be where I am today.  I think it was three days after Christmas that year that I found out I had Multiple Myeloma, an ‘uncurable’ cancer.  I never would have guessed that three years from then I would still be on several chemotherapies, still have to deal with pain, still be so incredibly nervous every time I visit my myeloma specialist because most of the myeloma world says that recurrence is inevitable.  But, this is exactly where I find myself, and I have no other choice than to walk the path God is leading me on today.

Much has happened since my last blog.  My kids have grown like weeds, my hair has grown back and my husband and I continue to grow closer every day!  That’s alot of growing!  I’ve also taken part in a few myeloma trainings through a wonderful organization called Patient Power.  I’ve written a few articles for the Myeloma Crowd, and I still talk to everyone that will listen about the life altering world of being diagnosed with a cancer most people expect you to die from in just a few short years.  Not all, but most.

family

Amazing things are happening in the multiple myeloma field.  Actually, amazing things are happening in the realm of all cancers.  Today, targeted therapies using your own genetics is becoming more and more the norm.  We have T-Cell therapies where patients are given an engineered form of the HIV virus that kills tumor cells and so many new chemotherapies that, as my doctor likes to say, ‘adds to our toolbox of care.’  This gets me around to the point of this blog.  None of these new therapies would be possible without support from the many foundations that donate to research for the cure.

Please watch the Fighting Fire with Fire video released by the Leukemia and Lymphoma Society.  The LLS funds research for the blood cancers, including Multiple Myeloma.  Without the LLS, I might not be in remission today, or I might have died in my first 18 months, which is the amount of time many myeloma patients were given only a few short years ago.

Over the last few days, you may have seen commercials for Light the Night at the Devon Boathouse in OKC this coming Friday, November 4th.  Light the Night is the Leukemia and Lymphoma Society’s main fundraiser where survivors, warriors, family and friends come together to honor those who have survived, those who are fighting and those who have lost their blood cancer battle.  Incyte Pharmaceutical has honored me by sponsoring a Light the Night team in my name.

This is a family friendly event, including activities for kids, fireworks, and a live band.  I would love to see as many people as possible support this cause, not only for me, but for the thousands of kids and adults in our community affected by blood cancer today and in the future.  If you can’t come out on Friday night, please consider donating.  You can donate to our team, which Incyte will match, or you can donate directly to me.  I can promise you it will be money well spent!

Thank you so much for your continuing support and prayer!  These last three years have not been easy, but they have been easier thanks to all of you!

‘For I know the plans I have for you, declares the LORD, plans for welfare and not for evil, to give you a future and a hope.’  Jeremiah 29:11

 

Can you believe it!

It was all arranged and we were set to go. kate and I had a few appointments to attend and then we would drive down to London again for my 3rd IV chemo drug day in my 6 months worth of treatment. The problem with myeloma is that it makes it difficult to plan very far ahead. You never know quite how the treatment and the damage that the toxins or the myeloma is taking on your bones is going to effect you, so it’s doubly frustrating when the plans change because of something that happens in the hospital. My lovely new research nurse, Diane, was equally as frustrated and very apologetic when she called yesterday to say the drug wasn’t going to be available. Luckily we hadn’t yet started our journey down he motorway. However any plans for today have had to be scrapped as we make our way down to the hospital this morning. Kate has kindly changed her plans to drive and accompany me through today’s ordeal. I shouldn’t really complain, I know I am lucky to be at one of the best hospitals in the UK and do receive on the whole excellent care, it’s really just my inability to be able to plan anything nowadays that gets me down sometimes.

It wasn’t all bad yesterday. Both Kate and I had some pampering, including make up, nails and tea and homemade cake at the Cancer Hair service. This really is a very special place run by some lovely generous people and you can’t help but feeling more cheerful after attending one of their sessions. The positive energy shared around makes a big difference.

Talking about positive energy, I have decided to embark on an Alpha course. I am more of a spiritual than religious person. I find it hard to accept, especially word for word, all that is written about in the bible but there are lots of stories that I read as metaphors and give me a feel of what things might have been like many years ago and messages about how we could possibly consider living our lives today. I also believe in the powers of prayer whoever it may be to, as a way of asking, sending out and receiving more positive energy. I would however like to have a stronger faith, but I am cautious that I am not just reaching out at this time because I’m feeling particularly vulnerable. I have always been interested in religion. I was christened in the Church of England, have a Jewish mother (which in their books makes me Jewish), my step father is an Atheist, my cousins are preachers in a New Fronteir church currently being developed in Dubai and we have some great friends including the local retired vicar who is always happy to lend a listening ear. I have had lengthy conversations with the Mormons, attended happy clappy churches, been a regular visitor to the Catholic Church, where both my girls were baptised and now occasionally join in with the local community church where Colin rings the bells in our little village. Colin has agreed to be my chaperone on the Alpha Course although he doesn’t want to be actively involved. He is a Humanist and at the moment is finding our current situation quite difficult to come to terms with, he is battling with equal measures of anger and upset. He doesn’t like to share his feelings at the best of times, let alone with strangers, so exploring his faith or lack of it with an unfamiliar group of people is a bit of a nightmare for him. But being the lovely man he is, and because he can see how important it is to me, he is willing to come along. I just hope it all doesn’t get too much for him, but as my Psychologist said on our last visit, it’s worth trying anything offered even if we go along once and then feel it isn’t the right time or thing for us. We are both starting on some reflexology sessions too, at our local hospice, which may be more of a comforting experience for Colin.

I was also able to use my free afternoon yesterday, to get on with working on the BrainBox. Re-writing the manual is a fairly straight forward process but developing the physical computer metaphor, from a solid box of components that all click together, into a cardboard cut-out is proving to be more of a challenge, but we will get there.

So today it’s back down the motorway and then we can look forward to the weekend. We will be catching up with family and friends or just resting, depending how the mood or the journey that myeloma takes us on next, although I do try to be the one in control. Why change the habits of a lifetime?

Have a very happy Friday

Deborah x

PS. John Lewis update. I received two separate letters (if you can call them that) the first included £25.00 worth of vouchers the second £50.00. I expect they sent out the first before agreeing on the £50 but at least I am not out of pocket and the extra £25 more than covers my additional costs. I would however have appreciated something more than a one line letter that just said; “please find your enclosed vouchers as a gesture of our goodwill”, or the unsigned compliment slip. I know they did apologise to Colin over the phone but it’s just another example at their lack of understanding of their customers and how they missed the point from the first round of mistakes. Honestly a few words of kindness and a decent apology letter would have gone someway to make the whole dreadful experience a bit more palatable, it was never about the money, but I think I must end it there and move on now, even though I still feel very cross and upset by the whole unnecessary episode.

Filed under: general chit chat, Myeloma, NHS, The BrainBox

Giving In and Giving Up

Every few months or so I make the same stupid mistake. 
Sometimes I
just get so frustrated with
my poor health,

never ending infections and  PAIN,  that
I just decide to throw it all
up.

I mean literally and figuratively!
  


Lately I have been dealing with nausea from too many antibiotics

resulting in stomach aches and another ulcer. 

Also...
My liver decided to quit functioning properly.


So a few weeks
ago I had a liver biopsy. 

The Liver doctor inserted a long
needle between the ribs

on my right side and pulled out a sample of
tissue to be examined.

(it was not nearly as painful as I had imagined-thank goodness)

It's been over three long anxious weeks and
I still
have not received any results.
 

The nurse did tell me over the phone that
it's not likely cancer

from the lab report she read (whew).
But still I
must continue to wait! Very frustrating!!
  


So to sum it all up.
I am sick of being sick! 
Yesterday I decided
to quit. 

Instead of getting out my 2/day pill box filled with antibiotics,
pills for this side effect and another for
the side
effect of that side effect,

as well as a host of vitamins and
minerals,

I just gave up and threw the box up onto the shelf.
I
tore off my pain patch and decided it was all in my head. 

Maybe the
reason I am always tired, have no appetite and can't sleep

or can't
sleep enough is just because of all these stupid drugs!


     

At 2am I woke up in PAIN.
It hurt from my toes up to my nose.
My body was stiff and grating.

I managed to hobble to the bathroom to
get a drink. "I can do this,"

I said giving myself a pep
talk, I turned my iPod on,

plugged in my ear phones and forced myself to
go back to sleep

 while listening to my " middle of the night, lull me
to sleep music".


It finally worked for a couple hours
until the pain
grew and gnawed me awake. 

I lay there gathering my thoughts and then

finally my strength to do what I had to do.
  

I hobbled back to the bathroom pulled down my pill box,
and
took the few most important pills including a pain pill. 

I grabbed a
new pain patch and slapped it on my back.


I gave up and gave in. 
I gave up the idea that my poor health is all
in my head. 

That the pain is just imagined,
and that because I am in
cancer remission

 the effects of fighting it have disappeared.
They
haven't.
 

And I gave in to the fact that I can not do this on my own. 
That
(as my husband says) "It is what it is." 

My body has pain and my body
is still trying to heal.

I can not run away from that fact. 

I
gave my pain and my problems up in prayer.
      

I pleaded for strength and courage to continue.
I need medication. I need faith.
I need strength from my Father in Heaven.

When I quit fighting against the pain, and
give in to what I must do.
When I give up my pride in trying to do it all my own,
and lean on the Lord for help,
I gather the strength to continue
climbing this multiple myeloma mountain. 

Here is one of my favorite hymns.
"How Firm a Foundation"
3. Fear not, I am with thee; oh, be not dismayed,
For I am
thy God and will still give thee aid.
I’ll strengthen thee, help thee, and
cause thee to stand,
Upheld by my righteous, upheld by my
righteous,
Upheld by my righteous, omnipotent hand.









  


Thankful Thursday

      As promised from my last post- lets talk puppies!
This is Kirby a shih tzu my family gave me for my birthday. He is a happy, furry, puppy who soaks up any kind of attention.
       He is a great addition to our family.  Kirby and Zoey, our airedale terrier, have become bests friends.

And now introducing
    THANKFUL THURSDAY a great blog idea shared by Phil another mm blogger.  Every Thursday until Thanksgiving, I will be posting something I am thankful for.
    Today I want to share with you my gratitude for several friends in my life who have been the answer to my prayers over the last two years.  I am learning that many times the Lord answers our prayers through other people.  If a person is “in tune” they will act upon the promptings they feel.
  There has been several times when I have prayed for something and soon after I received a phone call or a visit from a friend who told me they felt prompted to check on me or see how I was doing. These always seem to happen when I need it most.
    Just yesterday I wasn’t feeling very well.  Once again I am coming down with a cold.  It was after 6pm and I had not even thought about fixing dinner.  While I was resting, a friend dropped by with a dish of homemade tamales.  She knows my boys love them. Dinner problems solved!
 I am so blessed to have good friends in my life who not only bless me with their friendship but also act upon the promptings they receive and are truly an answer to my prayers.

Back Among the…

mostly living. This is the first time since the transplant back on March 29 that I have felt energetic enough to post something. Since the transplant I have been a bit sick, mostly nauseous, thanks to all of the drugs I’m taking. I have mostly been just tired, having no energy at all. I was sprung from the hospital on Friday April 9, although parole might be a better description, since I have to go in for check-ups once or twice a week. Everyone tells me I’m doing well, either on or ahead of schedule. I have to admit, it doesn’t always feel that way. But today I had enough energy to read, and to write. So now it’s up to me to press myself a little more each day, regain strength, and the ability to focus. Right now I’m good for about 1or 2 hours a day. I’m hoping to double that by next week. I have to admit, it feels good to write again. Thanks for your prayer, I assure you they are felt.
Deacon John
Tuesday of the Third Week of Easter
April 19, 2010