“We Will Be Prepared For Success!”

As mentioned in a previous post, the specialist who is overseeing me while my usual specialist is on leave, made contact with Dr Elihu Estey in Seattle to see if he would be willing to have a phone consultation with me regarding possible treatment at his clinic.

He agreed and last week I spoke to him on the phone and what a great phone call it was! He has agreed to give me a second stem cell transplant! 

My favourite thing about Dr Estey is that in every discussion I have had with him via email and telephone, he has repeatedly said "we will be prepared for success".  He has not said "I will cure you" or "it's going to be okay" because there is no way he can say those things.  He has not guaranteed that a stem cell transplant will work but his attitude is, if we are going to go ahead and do it, let's expect that it will!  

"We will be prepared for success!" This one simple sentence carries so much power!! How refreshing it is to experience some positivity after years of bad news!  When I came off the phone I cried tears of relief.  There is someone out there willing to give me a chance! The fighting we have done has paid off!

Dr Estey's attitude sits so well with me and aligns with my way of thinking.  If I'm going to chase a transplant and fly across the other side of the world for it, even if my chances aren't great, I need to believe it's going to work!  Otherwise I may as well not bother!

So what next?

His advice is to first have another bone marrow biopsy in a week's time to see if there are any cancerous cells back on the radar.  If there is he recommends repeating the last round of chemo that I recently had.  This would mean months without an immune system again, which carries a significant risk of contracting infections.  

I am yet to pass on his advice to my specialist and to hear whether Waikato hospital is willing to work in conjunction with him and heed his advice.

I'm still waiting for an estimate of costs from Seattle.  In the meantime I've been getting things set up for fundraising.  We have been so lucky to have had help from McCaw Lewis lawyers and GW Scott & Associates accountants to set up a trust account.  Their generosity and expertise has been phenomenal!  

The reason for involving lawyers and accountants is so that everything is above board. When the time comes for fundraising, people who want to donate can do so with confidence that the money raised will be used for what we say it will be used for.

Thank you to those who have already offered to donate and for those who have put forward fundraising ideas.  We have had so many amazing offers of help over the past year and a half, which we have been putting off until we've had something specific to fundraise for. We will keep everyone updated and let you know when it's all kicking off!

To visit previous blog entries, select posts from the archives on the right hand side of my blog page or click on “older posts” at the bottom.

"Immune system? Is that you?!"

Hooray!

We've been patiently waiting for the return of my immune system and I'm happy to say it's back! 

                                     No more masks!  Heading out for dinner with Raymond.  No little pooch, you can't come.                     

                                       

My beautiful little white blood cells are flourishing!  Already they are doing their job by fighting off a cold that has finally caught up with me. Go little white blood cells, fight fight fight!

I'm still needing platelet transfusions three times a week as my levels struggle to hold.  These are the cells that stop me from bleeding to death.  The normal range in a healthy person is 150 - 400 x 109/L. Mine usually sit around 5 hence the spontaneous bruising on my body and blood blisters in my mouth.

Receiving platelets

Haemoglobin is the part of the blood that delivers oxygen from the lungs to the cells around the body and carries carbon dioxide back to the lungs to be expelled.  The normal range in a healthy female is 120 - 160 g/L.  My level sits between 70 - 90 g/L.

This means that I am often light headed, breathless and feel extremely tired and weak.  When my levels are really low I struggle to do the most simple tasks like getting dressed and sitting to eat.  My body is simply not getting enough oxygen!  Having red blood cell transfusions gives me more haemoglobin and makes me feel like a new lady!

        

Desperate for some red blood cells

In it goes!

Celebrating a day of good energy levels with some non-alcoholic bubbles

Thank you to all the wonderful people out there who are able to donate blood!  You help to keep people like me ticking along!!

If you can, please do!

A shift....

I’ve noticed lately that there has been a shift in my thinking.  There are many things that point to the helplessness of my situation, to my demise, and yet I can’t help but feel I have a future. 

I mentioned in a previous blog that it had gotten to the stage in my thought processes which I guess probably indicated the level of confidence (or acceptance) I had in where I saw my future heading.  For example, when purchasing an item of clothing part of my decision making involved considering which of my friends or family would fit the item or would get use of out of it when I am gone.

That all seems to have fallen away recently and Raymond and I often talk about the future and make plans expecting that there will be one.  This has happened naturally.  I haven’t consciously tried to change my way of thinking.   I’m not attempting to make a massive effort in thinking positively.  I’m not trying to kid myself into thinking I will be fine.   I’m not in denial. 

At a time where I should probably be fearing the worst, I feel immense hope.  I genuinely expect a future and I have noticed how my thoughts and language are reflecting this.  I’ve gone from saying “if I’m healed” to “when I’m healed.”

As Raymond and I wandered along a marina looking at all the boats and yachts the other day we chatted about what we will call our boat in the future.  We decided on “The Goodman” after my specialist (Hugh Goodman).  We will invite him and his family to come fishing with us.  I am yet to tell him of this dream.  He may think I’ve lost the plot!

As well as my thoughts and language changing I’ve noticed that I also want to take care of my body.  Until recently I had thought making an effort with eating healthy was too hard and pointless.  Now that I feel hope again I want to eat nutritious foods to give my body the best chance and I feel good about this.

The challenge for the next wee while is to maintain our sense of hope and confidence in a future.  It is human nature to experience doubts and there will be times when voices in my head are warning me of getting my hopes up. 

As we take in news of blood test results and the opinions of my specialists we will aim to then let their words wash over us taking away their power of holding us in a state of hopelessness and despair. 

After all, nothing is impossible and miracles do happen so why shouldn’t I have mine?  We don't need to know how, we just need to keep believing!

Facebook page

I now have a Facebook page set up to help get my story out there!

I will continue to do blog entries on this site.  I will be linking these onto my Facebook page for those of you who have an account and would find it easier accessing them that way.

My page is called Bone Marrow For Life.

Please feel free to share my page with your friends on Facebook by clicking on the three dots on my cover page and pressing 'share'.

Thanks!

A little girl waits...

We recently waved goodbye to my specialist (Dr Hugh Goodman) who has gone on a hard earned holiday with his family.  We heard he is going on an amazing trip overseas with his wife and kids including a safari in Africa - jealous!!  That's at the top of my list for when I get better!!

I felt really nervous about him leaving - there may have been a bit of separation anxiety!  He knows me and my condition so well and knows where we are up to with treatment plans etc.  His advice obviously is super important to us and so not having it for the next seven weeks is a scary thing.  I got the feeling that he felt bad for going away on holiday but if he let patients like me stop him from taking leave he would never get away!  Plus I think a specialist who is relaxed and well rested is good for everybody!

Before Hugh left he did a great job of informing his colleagues of my situation and where things are at. While he is away Dr Natalia Gavrilova is looking after me.  Already she has proven to be very efficient, empathetic and supportive of our plans and my willingness to keep fighting.  She's also really lovely and I like that she sometimes suggests things that are of a more holistic approach e.g.using food as medicine.

We are still looking into our options in America for treatment.  The cancer centre in L.A. have said they will give me a second stem cell transplant if my blast count stays below 10% in addition to me having a good count of red and white blood cells.

My recent bone marrow biopsy showed that my bone marrow is empty of cancerous cells, however it is also empty of my good cells.  It has been one month since I finished the last round of chemotherapy and my immune system is still yet to return.  We will update the L.A. centre and see if they would still be willing to treat me or whether we would need to wait until my white blood cell count picks up and to what level.

I have started on some daily injections of G-CSF (granulocyte-colony stimulating factor) to help stimulate the return of my immune system.  We have held off using this drug for as long as we could due to the risk of it also stimulating the growth of cancer cells.  It was decided the risk of developing infections and sepsis outweighs the risk of the previously stated.

It was recommended to us by a friend to contact her specialist, Dr Karel Dicke in Texas, to get his opinion on my condition and possible treatment as well.  His centre doesn't do allogenic stem cell transplants but he recommended we contact a previous colleague of his, Dr Elihu Estey in Seattle.  Dr Estey is an expert in acute myeloid leukaemia and myelodysplasia, which are the categories my leukaemia falls into.  Handy!  Dr Gavrilova is contacting him via email on my behalf with information on my health history to see whether he would be willing to have a phone consultation with me and ultimately treat me in his clinic.

As we wait to hear from L.A. and Seattle we are putting together an idea of costs based on the estimates we have been given so far so we can begin fundraising.  It's difficult to know an exact cost at this stage.  All we know is it is astronomical!  We might be kidding ourselves thinking we can raise the money in time but if going to America for a transplant is the right move we have faith the money we need will somehow appear.

For now I continue to make trips to hospital at least three times a week for blood tests and blood transfusions.  I need platelets weekly at the moment and occasionally a bag of red blood cells.  A reminder to those of you who can donate blood products to please get out there and do it!  There is a room full of us folk (and many many more) who need your blood!

Apart from the trips up to hospital I'm rather house bound.  It's critical that I try to avoid infections, which means avoiding crowded places, sick people, children, uncooked foods e.g. salads, soil and being outside. I'm not going to lie, I do risk-it-for-a-biscuit sometimes to try keep my sanity.  If you see me wandering down the road with my dog and my mask on my face it's not because I'm precious about breathing in traffic pollution, it's because of the fungal spores and other microorganisms in the air that could see me back in hospital!

Tools used to perform bone marrow biopsy

After the bone marrow biopsy

Solid piece of bone marrow

At home sleeping off the sedatives from having the biopsy and managing to do it with one eye open

Blood blisters on my lip....always a sure sign I need a platelet transfusion

The masks I am required to wear upon leaving the house

                
                                                                             Twinnies!!

Someone took it one step further....thanks John!