Random Ickiness

Some people have started to ask me about my blood counts seeing as I'm at day six.  There are no blood counts.  My platelets and red blood cells are controlled by infusions.  My white blood cells are less than 0.1 which means, there are so few, they can't count that low.There will be no changes in that until Day 12 at the minimum.  Its one of the things that makes these days after transplant so frustrating.  We are waiting in definite pain and discomfort not knowing if anything will happen (though we assume it will).

I think this is the hardest part mentally for any patient.  The chemo isn't easy for sure but its nothing like the waiting now.  Everyday I wake up, usually in pain, unable to eat, with very little sleep from the night before.  And one of the hardest moments for me is saying, "Get up!" and actually doing it. Sometimes, the argument goes on for quite a while.  Some moments, there doesn't seem to be a point in getting up.  I have food brought, there are machines that help my circulation when I don't walk, I even can have diapers and have people change them.

There is also usually some new frustration of the day to deal with.  A couple of days ago it was massive water weight, now endless nose bleeds.

But I think people generally are survivors.  We know that we just have to keep going. I am extremely lucky here to also have fantastic staff who walk every step with me.  They will help me address any problem, no matter how small.  And having a on-site cheering team of David and now Linda makes a huge difference.  I want them to see me trying hard.  They worry and they love me.  And they will report to others if I'm not pulling my weight  LOL.  Doing this for others,especially Madeleine pulls me through the moments I can't do it for myself.

Below I've put a picture of myself and some of the bizarre things that can happen.  I woke up yesterday with hugely puffy eyes that were weeping.  We thought this was a result of the 8 kilos of fluid I have gained (but now gratefully losing).  Now that the puffiness is gone, I have two big shiners.  Nobody has seen this before here.  My nose is packed with guaze and meds to stop them bleeding.  Every two hours, I have to repack my nose because it can't stop.  This has been going on for about 30 hours now.  And you may be able to see a lump on the right side.  These lumps come up and go down on either side of my jaw randomly, again maybe associated with water weight or the teeth chattering/clenching that comes with the pain/cold etc.

I am keeping my spirits up and I an happy everyday to be another day closer to engraftment!

Love and hugs
E

Post for Vincent

First of all, please understand that my writing will sometimes not make sense.  Chemo brain is setting in.  My memory is poor and I struggle to think in logical patterns.

 I had a request from one of my young readers, Vincent to know what the procedure for transplant is.  So in short form, here it is:

Oct. 2013- met with doctors to see if I am a good person for transplant
Feb/Mar/April- found match.  did a bunch of testing to see what shape my body is in

April 18 is Day -6 is my first chemo day.  I get four days of the same chemo drug called Fludarabine.

Day - 4 and 3 I have another chemo drug added called Cyclophosamide.  This is the drug that makes me lose my hair.

Day -1 I get a new chemo drug called ATG.  Its made from rabbits.  I also get total body irradiation.

Day 0 I get one more dose of ATG and then I got my new stem cells.  They come in a bag just like a regular blood transfusions and drip in over 3 to four hours.  The donor has a different blood type than mine so even though we genetically are very close, they worried that I could have a bad reaction to his/her different blood type.

It takes about 12 days for the new stem cells to make their way into my bones, attach on and start making their own blood cells.  During this time, all the new stem cells are pushing out my old ones and any fat left in my bones.  All the chemo drugs are to make sure my old immune system won't attack the new one we have just put in.  In the days after transplant, I will get 4- 5 days of short acting chemo just to keep the new stem cells their happiest.

During these twelve days, they really worry about me getting infections.  Even a common cold can take months to get rid of.  Everyone has to wear a mask in my room and I have to put one on to go out.  I don't have visitors right now.

Every Day Procedure:
12 AM-Vitals
4 AM-Blood drawn
7 AM- Up for morning
8 AM- lots and lots and lots of new drugs and vitamins run through my CVC, vitals
9 AM- breakfast, if I can eat, which most days I can't so I order a strawberry milkshake
10 AM -Doctors check me out
11AM- I try to rest
12 PM-2PM-vitals, running any new orders doctor gave like blood,
2PM- 5PM is a repeat of the morning drugs and I try to walk a little or answer emails or sleep, vitals
6PM- dinner
7 PM- may a shower or rest or talking to Madeleine
8PM- vitals
8PM-12PM more drugs are run and I try to sleep as I'm able.  I also tend to write my blog during this time.

I hope this gives an idea of how myy days are.  Time has little meaning here other than shift changes for the nurses.

I was happy to answer Vincent's question and if any of my readers have any questions, please feel free.

day 3+4

I have so many thoughts to share with all of you but I'm really struggling with fatique.  They say this is the worst time now.

Here are some pics.  Bolek shaved my head and it was very freeing.

Keep on trucking -end of day 2

Today was a much better day.  The doctors said I look worrisome on paper but not when they see me.

We are starting to come to a balance of pain meds so that I can eat and get up without pain and not be under a fog too.

It is amazing what small triumphs there are here but they feel huge in my world.

For example:
My creatinine didn't go up which means my kidneys are holding.

I was able to walk around the unit in five times in two lap portions ( by the way, its 13 laps for 1 km)

And the biggest thing is I ate a small piece of lasagne.  Whoooohoooo.

Seems silly doesn't it?  But here, getting any solid food down is huge.  Especially with mouth sores.  I unfortunately have contracted them very early because I came in with such a low immune system.  Normally people have them from day 5-day 11.  I started on day one.

But nevertheless, I am very grateful for the small triumphs and the small luxuries.

greetings

Hi everyone,
Thanks for being patient.  The chemo in the last couple on days before the transplant knocked  me back.

After irradiation, I developed a very sore GI track which contuined very painfully into day 1.  I must admit this has been my focus of the last 24 hr. As much, I have been on a a lot of morhpine and unable to do anything but be in a stupour.

This has caused an eating issues as well.  As David said, I have been drinking protein shakes as meal replacements and I did manage to get down some mushroom soup last night.

Lying in bed can cause other problems like lung and clot.  I am on pressure socks that continually inflate and deflate to prevent clots.  As well as oxygen now and then, especially because my blood pressure was low yesterday.  I also have deep breathing exercises as there are some signs of lung issues.

By far the biggest issue I face face right now is my kidney function.  The medications needed to keep my graft happy are very hard on my kidneys.  My kidneys may have taken some damage during chemo or the transplant.  Either way they are being very stubborn.  This is my greatest concern right now. Getting the kidneys restarted well, so we can do our work to make sure the graft is happy.

As you can probably tell, I'm in a very fine balancing act to keep everything together until the graft can come into its own which is about 10- 12 days.

When they say my job is to eat, drink and rest, it is much more involved that that.

I am trying to staying focused right now.  The most important thing for me is to giving this baby cells the best fighting chance.  In a way, I do feel like a mom, protecting my new baby from the baddies of the world.

I am physically and emotionally exhausted but I'm still strong inside and focused.  I need all the prayers I can get to keep me pushing up that hill!

On a very note, our angel came through with a gorgeous apartment yesterday.  I could see the excitement in David's face when he showed me pictures.  He should be asleep there right now I hope restoring all the energy he needs.

I have received all your personal notes and thank you.  I am not ignoring them but simply do not have the energy to reply.  Please know they mean a great deal to me.

Guest blogger, David, keeping up appearences!

Hi to everyone taking the time to read Elizabeth's blog on her journey to health. I am writing the blog today, Friday 25th April, to let everybody know that Elizabeth is fine, but absolutely knackered!
Yesterday was day zero, the day we have waited so long for, mostly patiently, but sometimes impatiently. The day started with a huge amount of anxiety, the anticipation and trepidation was palpable...at last, it was happening!! The donor cells arrived around 1.30 pm, (see pic) by 3.00 pm they were transplanted and working their magic, I gazed outside the hospital window knowing that somewhere out there the donor was living his life unaware of the gratitude winging its way to him, or her!

            The bag of magic is hanging in the top left of the picture..........

Following on from the incessant IV treatment, it hasn't stopped since we arrived in Calgary on the 16th of April, I finally left for the night around 9.00 pm, happy that Elizabeth was sleeping, and happy that I would soon be in the same state of relaxation!
Day 1, I arrived to find Elizabeth in a great deal of discomfort, Her throat is now sore, making it hard to take on medication in pill form. The best she can manage is to sip water, the P.C.A, Veronica made a delicious strawberry milk shake, creamy and delicious and thoroughly enjoyed by Elizabeth!!
As you would expect after the transplant, today is quite intensive....vitals checked regularly, fluids in a similar amount to the Niagra Falls making their way blissfully into Elizabeth.
I am hopeful that you will continue to share this journey with myself and Elizabeth, and I hope you find it informative and helpful!

I will sign off by sending hugs to everyone from Elizabeth, and a hearty handshake from myself!! LOL

Bermuda sands...

Here is my irradiation post.  Mostly pictures.  The treatment went absolutely fine.  It was very comfortable and warm. It is the most enjoyable treatment I've had so far.  Debbie and Mary are fantastic techs.   I slept through the second AtG dose except to get them to add a tiny bit more steroids for face swelling.And David bought me ice cream after a long nap.   Anyways life is a-ok from RM 567 today.