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.

 

 

First day of ATG

Yesterday was the first day of rabbit ATG.

I did end up asking for extra steroids because of my past experience with horse ATG and dinner plate hives.  The doctor agreed though he did not think it necessary.  The day was mostly uneventful except for me being a complete chatterbug and super loaded with energy.  Typical steroid high.

Unfortunately, I began to crash around 5 p.m.  I was exhausted from lack of sleep and some steroids were coming out of my system.  David stepped out of the room and I closed my eyes for only a moment and the steroid dreams started.

From my own past experience, steroid dreams are mixed up and crazy and very vivid.  From what I understand, it's because the brain can't shut down properly.  There were many nights before I couldn't sleep at all.  There are lovely drugs for that, but I digress.

These were different from anything I had ever experienced: terrifying and extremely gory and uncontrollable.  I would close my eyes and the images were there.  Images that no brain should ever be able to come up with. By the time David was back I was in hysterics.  I couldn't cope at all. I didn't want to sleep and I had another dose of steroids mandatory in three hours.

Long story short, anxiety meds were ordered but there was some emergency in the ward and it was many hours later before they were available. By that time, I had new steroids on board and David stayed with me while I tried to rest. I didn't end up needing them. What worked like a charm was a meditation trick that a wonderful counsellor once taught me.  I was able to control the dreams until they no longer had any effect on my fear level.  I was able to finally sleep.

This is very personal to share, especially as I now do not know most of my readership now.  But I decided to share for two reasons.  One, the compounding effect of drugs on a system. I've dealt with many drugs over the years but I do not remember this kind of intense effect on me.  It gives me a renewed respect for how potent these things can be.

And second, I have long dealt with anxiety and fear as you may have gathered from my previous posts. Aided by the cocktail of chemo and drugs, last night was as fearful as I've been since since I thought death was knocking at my door two years ago.

But, I stand on the other side of it once again knowing that fear is but shadows.  And the shadows no matter how gory or real feeling, can be walked through.   We made need tools, maybe some talk, and medicine relief.  But we can get through fear and anxiety and we don't have to be ashamed.

Tomorrow morning is more ATG with LESS steroids and irradiation as well.  And yes I will be taking the recommended Ativan with the irradiation.  So I expect to enjoy my music with Ativan induced sleepiness of Bermuda beaches while I lie in my awesome gel pack box.  Pics to come.

To leave you on a happier note, here is a picture of lovely Ghalia, my nurse, and I before ATG. Bunny ears intended.

Its still dark but I have my tea...

Good Morning all,

It is early here...530 am to be precise.  But as the title says, I have my tea so I'm ready to go.  Well at least long enough to write this blog and then snuggle back down into bed for an hour or two.

It's hard to sleep in the hospital as most of you well know.  The nurses take vitals every four hours but it seems that my body wants rid of the drug throughout the night so I seem to be up every hour or two as well.  Despite that, I think I'm getting some sleep or I'm delusional....I'm going with the sleep.

Yesterday was the most difficult day by far.  The cyclophosamide hit me hard.  I ended up with about 11 hours of nausea even though I had three to four anti-nauseants on board at all times.  What was worse was the bizarre mouth, jaw, neck and arm pain.  It all hurt and I couldn't find a comfortable spot to lay in but when I did move, my stomach regretted it.  I finally gave into getting morphine after trying codeine and it did work thankfully.  The nausea finally passed for good at 11 p.m. last night and by 12am vitals, I was feeling pretty good.

Poor David, I could see the strain it was taking on him.  He only left me to find a washroom and the occasional cup of tea.  He feels helpless for me and I feel helpless for him.  Bless Veronica's heart (our personal care attendant), she always leaves him a plate of food and a cup of tea.  It is a huge relief to me that he is at least getting some healthy food.

Today is AGT, a serum from rabbits.  I saw the premed allergy protocol and laughed.  Not enough steroids for me in there!

On the good side, the nutritionist saw me yesterday and here is my instructions: if you have to choose between an apple and apple pie, pick the pie, substitute juice, milk,ice cream milkshakes instead of water.....make every calorie count!  Uhm...OK:-)

Will get some pics of my staff later today.

Hugs all around
E

Beautiful morning

Morning everyone,

I just wanted to give a proper update this morning.  I was feeling bleh last night but I didn't want anyone to worry because I hadn't posted in a couple days.

First of all, we have a picture of the view from ward 57.  All the views are pretty because we are right beside the river valley.

So as I said before, I got cyclophosphamide yesterday.  In high doses, this drug has the interesting affect of "Wasabi Nose".  Essentially, its like the worst sinus cold and the pressure is intense.  For me, it made me nauseated because of the pressure on my eyes, I couldn't see straight.  But it did stop after a while.
Also with this drug, they want the patient to drink 2 to 3 litres in addition to all the fluids that come in the chemo.  Cyclophosphamide is a very harsh drug and they want it out of the system as fast as possible.  Being the uber good patient, I got in my 3 litres in short order but then it wouldn't leave my system.  I ended up gaining 10 lbs.  I did lose some overnight but the doctor gave me a diuretic to get rid of the rest.

Unfortunately, it started my anxiety up.  I was desperate yesterday to get rid of the fluids thinking about all the nasty side effects.  When the nurse told me that mobility would help, I got up and walked a kilometre and a half around the ward (not a good idea with a hemoglobin of 70).  Then later at night, my lungs were feeling heavy and I was coughing a little.  Of course my anxiety took me straight to pneumonia!  But in all likelihood, its just a combo of low hemoglobin and too much fluid.

I once was accused of being a hypochondriac by a well-intention GP.  I immediately changed doctors to someone who understood that me be overprotective about my health is how I stay alive.  I don't endorse self-diagnosis and I have a team of health professionals who I trust but sometimes that anxiety does rear its ugly head.

It is something I have to be cautious about because worry does me no good.  The anxiety also tends to produce non-compliance in me.  But I have to say, I have a great team down here.  One of my nurses in particular, Galia, is fantastic.  She gets me and that is huge for me.  I will introduce you to her in future posts.

David said the time down here has not been as stressful as he imagined.  We pretty well do the same stuff as at home: watch football matches, drink tea and go for walks.  I think he actually enjoys it.  He gets to watch more football and hockey here than at home, he gets cake specially brought in by the nurses and that massage chair!  Positively spoiled he is!

Tomorrow I will introduce you to some of my staff and get some more pictures of the unit just for something different.

Lots of love and hugs,
E

Cytotoxic

I won't make this long as I'm having a hard time concentrating.

Got two types of chemo today.  The first day of cyclophosaphimide.  I'm not as sick as I feared which is a blessing bit I'm also not feeling well.  I've had a lot of anti- nauseant meds so the nausea is at a min.

I've included pictures of my door and bathroom.  Odd I know.  These are the precautions for everyone else so they don't cone in contact with the chemo.

Chest is feeling better today which is a relief.

Tomorrow is more of the same.

All my love,
E

First day of chemo

First day of chemo was yesterday.  I got a drug called fludarobine (sp?).  It went in well with no immediate reactions.  This drug takes a few days to make people sick and some dont ever feel nauseated.

I did develop a fever in the early afternoon that was steady until 8 pm.  I hovered just below the cutoff where blood cultures and antibiotics are used, so the nurses watched carefully.  They were worried that my central line was infected especially because I have quite a bit of pain in my chest and shoulder right now.

Mercifully , the fever came down.  It looks like a reaction to the chemo drug, which means I will likely have fevers for the next three days as I continue this drug.

On another note, David got some pictures on my central line.  I must admit, I do look like a cyborg but maybe that will be the fashion rage for this year.

The nurse was very impressed at how clean and healthy the site was after only 24 hrs.

I also got a picture of David enjoying the massage chair.  I really don't think he will leave if he keeps finding all this awesome stuff on the ward.  He refused to get out of the chair until the very last pummel of the 15 min. program. 

Other than that, all is well.  The food is good and there is plenty of it.  The chemo suppresses the appetite so by dinner I was forcing myself to eat.  It felt like eating two back to back turkey dinners.  But that's my main job here: to eat.  Best job ever!

Today's mission is more chemo and figuring out how to have a shower with this line in.  

Hugs and kisses,

E

Visitors

I have had requests about the visiting information at the hospital.  Here is the low-down...

As it stands currently, only two family members are allowed to visit at a time.  Apparently there is a lot of viral activity right now so they are limiting visitors significantly.  Children under 10 are never allowed on the unit. Flowers and plants are also not allowed on the unit.  I am also on a special diet that restricts some food items.

If visitors do come, they cannot have any hint of any sickness: runny nose, cough, feeling run-down or have been around anyone in the last week who has been sick.

If I end up with some infection, I will go into isolation and I believe visitors are more restricted at that time.
Right now I am in reverse isolation which means others are a potential hazard to my health.  I have to wear a mask any time I leave my room.

Other than that, they leave it up to the patient.  With the various chemos, patients sometimes don't feel well enough to have any visitors.

The best thing is to send a text, email or Facebook message if you feel like visiting and I will let you know what the current status on visitors is.  And please, please don't feel rejected if I say I 'm not up for it or that my blood counts are too low.  I will likely be very protective of my health right now because this is my one chance to get better.

The only thing I would ask everyone to respect is not to surprise me with visits.  It has been my long experience that the surprise visitors always come on the day when medications have forced me to run for the washroom every 5 minutes.  Not pleasant for anyone!!!!

Last thing is that I really am feeling super supported and loved right now.  I can't tell you how much it means to this journey to have all of you behind me.  I don't feel alone or scared so a BIG THANKYOU.

Love to all,
E

My new home

(This post is actually about yesterday.  I fell asleep before I could publish it.)

So today went very well.

This morning I got my platelets with no issues. Down here, they concentrate them to help get them in faster.  The whole bag was done in six minutes.

(My new room and home for the next month)

The central line is in.  I didn't get sedated for it which was fine.  It's really only an odd feeling and the radiology department has mastered doing them in under 10 mins!  I don't have a good picture to show as there are bandages. I will get a better one soon.

Central lines are fantastic.  They stay in for about 3-6 months and replace any needles I would normally get for blood work, IVs etc.  We are already using mine which means my arms can get a rest.

The staff here are fantastic.  Everyone is so friendly and sweet.  One of our PCAs even fed David and got him a cup of tea.  He's asked to be admitted.  The PCA said it was her mission to get David to eat more vegetables.  She's picked a difficult mission for sure.

Also great news!  We have secured accommodations closer to be hospital in time for my Aunt Linda to come. I am so relieved!

Well I'm off to try to sleep. Love, hugs and kisses

E

We have landed....

Sorry about not posting earlier.

I have been very focused on getting ready and handling family issues and the sickness.  I haven't had time to even think about the transplant which was probably a blessing.  

We left very early this morning as the transplant team wanted me in before noon today for appointments to check if the cold had moved into my lungs.  We ran all over the hospital getting tests done and saw my transplant nurse and doctor.  They are pleased with how I look and the x-rays show no infection so we are cleared to go ahead.  I left feeling very positive.  

Unfortunately the apartment has turned out to be a real dud.  The apartment building is grubby feeling and what we thought was a one bedroom is actually a bachelor apartment. David paced it out and its 390 sq ft.  That includes the bedroom, kitchen and bathroom and closets. There is no room for any guests unless you want the cot in the hallway.  It is in need of renovation because what has been done has been done badly.  The apartment feels grotty even though it appears clean. 

 I am really upset.  It took me so long to track down anything in Calgary.  We potentially have another place to go but its up in the air for now.  I'm ready to move everything  back to a hotel.  David says we need to sleep on it which, bless his heart, is a nice way to say I'm over reacting.  

For right now however, we have Internet and a tea kettle. That's all we need for tonight.  Oh and I almost forgot, there is a half bottle of whiskey and a bottle of wine left here.  That may help me to drown these sorrows.

But onto tomorrow.  I am going to get admitted into the outpatient ward at 7:30 a.m.  We are going to try and run two bags of platelets before inserting the central line. They need my platelets high enough to do the surgery, around 50. The last time I had platelets (Monday), I had a very big reaction. Hives and rashes from nose to knees. Tonnes of IV steroids and IV antihistamines to stop it progressing and that was the result of a 1/4 of a bag. I was supposed to get two bags. The reactions vary from time to time but I can't ever get a whole bag in.

 The team is getting platelets that are HLA matched and washed.  Sounds fancy and I think it is.  Apparently this should help to prevent my antibodies from chewing up the platelets....I think.   Hopefully these new matching and washing methods will help.

I will definitely update you tomorrow and have some nice pictures of my central line.

Frustrating

Well, I was worried about this, and here we are.

I have managed to pick up a sinus cold and Madeleine has some kind of stomach bug.

While we can still transplant with a controlled infection, it will be delayed if this is viral or if they can't figure out what I have.  I did get a nasal swab done on Friday and we are waiting for the results.

Madeleine has been shipped off to her grandparents.  I am very sad about his as this was supposed to be our family time before I leave.

I'm frustrated that this has happened at this critical time before my transplant.  Hopefully it will resolve itself quickly.

I will keep everyone updated as soon as I get my results.

Hugs
E

Great News

We spoke to my transplant doctor this morning.  All of my test results have returned.  They are very happy with all of them. Liver, heart, lungs and kidneys are in great shape. The only questionable one was the iron overload, which we knew before.  I feel like superwoman.  I'm quite sure that once I regain my strength, I will give the boys a sound beating on the football field.

We are all feeling very positive about moving forward. As my doctor said, its time to forget all about the transplant for a couple of days and just enjoy life.  David and I relaxed all day watching endless episodes of Lovejoy. We are going out to celebrate with dinner tonight.  It's heaven after this long run-up.

 Time for a cup of tea and another episode of Lovejoy!!

Signing off with love and hugs,

E

one week left

Please excuse mistakes in this post; I'm using my phone while waiting for another appointment.

Seven days left, three more appointments and I'm in Calgary. I feel like I'm preparing for the NASA space Program.

I am ready to get going.  Its time.  If we are going to do it, then let's do it!

A good thing about these tests is that I get to find out about how my body is doing.  I'm amazed by its resilance and ability to survive.  Makes me grateful for sure.

Also makes me wonder about this new bone marrow.  Will it be as resiliant?

I did get the clearance of health on my donor.  They are starting growth factors to increase production so I get some really juicy stem cells.  In two years I may be able to find out about my donor.  Who is this person?  Where do they live?  What's their life been like?  I'm curious as I will be carrying them around with me for the rest on my life. I really hope that my donor will want to have contact with me.

I'm off to my next appointmentnow ....

E

Sigh of relief

We are back from Calgary now. Happy to be home for sure.

The rest of the time was fine other than the bone marrow biopsy.  I decided not to be sedated for the procedure.  While it wasn't as bad as I remember, the freezing really hurt this time and the biopsy did too.  Ahhh well, it is done!  Good news is that I barely bled during and after the procedure.

We got a tour of the unit and I think it is well set up.  The rooms are large and they have really sunny common rooms.  Interestingly, we don't eat the food from trays like other patients.  I guess the food is prepared and brought in on a cart to be specially dished up.  I suspect it's to have less people handling it.  I will have a TV but no phone and there is internet access.

All and all, the trip was very good.  I feel much more positive and informed about what will be happening. Everyone is very positive about my suspected outcome.  Makes me feel more at ease for sure.

Saw the dental specialist today.  He said my mouth is in the best possible shape for going into the transplant.  Apparently the irradiation will permanently reduce my saliva production so I will have to do fluoride trays every night for the rest of my life to prevent cavities.

We are on the countdown now.  I have two weeks from yesterday to go.  I'm feeling like all is well and I'm prepared.  Madeleine is doing well.  She is happy and doesn't seem to have a care in the world.  David is rested up again and Josh took good care of the house while we were gone.

Signing off for now with hugs,
E

Work-up

Day two of our three day work-up in Calgary.  Both David and I are exhausted.  Yesterday was the longest.  Lab-work, meetings with a pharmacist, nutritionist, radiation technician, unit doctor, my transplant nurse and a social worker.  Today, we met with a psychologist, research, transplant nurse and I had a transfusion.

To make a long story short, they will be blasting me with full guns to prepare my body for the transplant.  Lots of drugs, lots of side effects.

 I think the best part of yesterday was the total body irradiation meeting.  I was much relieved after our meeting.  The way a nurse had previously described the procedure, it sounded like lying in a coffin.  Did I mention I'm claustrophobic?  Anyway, while I do get a box built for me, its see through and there is no lid.  I will be packed with heavy, warm gel packs and have to lie still for 20 mins.  Actually sounds like a spa trip to me....paid for by Alberta Health Care. I will be getting a very light dose of radiation; half of what normal transplant patients get.  I get the feeling its for good luck more than anything.

It was a tremendous amount of information and waiting around in between meetings. David was surprised by how tired he was by the end.  But he was a trooper!  For me, it was trying to remember everything and sharing what I know and walking around the hospital with haemaglobin of 77.  David found the quantity and variety of information enormous.

We explored the hospital a little.  Bad news is there isn't much food choice.  Good news is there is Starbucks just down the hallway.  The hospital is quite old but the unit I will be on seems to have quite a bit of light.

Today was definitely better. The transfusion helped though I found the differences in how they give blood a bit disconcerting.  They don't have a good patient checking system with blood products and they run the blood VERY fast.  But you know me, I made sure they changed the stuff I wasn't happy with.

The best part of today was sitting down with my transplant nurse, Alicja.  She's a lovely lady and works tremendously hard.  Today she was telling me that she believes I will do very well in the transplant.  The only thing that seems to be against me is my iron level which came out just under 2000 yesterday.  She doesn't expect any really horrible side effects like mouth sores and the like. I guess we will wait and see.

Tomorrow I'm in early for blood-work, a trace and  the bone marrow biopsy and aspirate.  I will let everyone know how that went in a couple of days.

Night with hugs,

E