Christmas Greetings - A Little Late!

We had a busy and fantastic Christmas - quite different from last years!  I told Doug that I wanted a "do over" of last years festivities as I was only an onlooker and not a participant!

We had a fun Christmas Eve at Doug's cousins - 8 kids ranging from 8 to 17.  Christmas morn was just the 4 of us to open presents.  Doug's sister and brother-in-law were here for Sunday brunch and yet more presents for the kids!  On Boxing Day my family was over for a BBQ!  It was mild with the temp around 5C!  Perfect BBQ weather in Winnipeg!  And of course more presents! 

Our Christmas festivities are still not over, we have dinner in Oakville with 5 more cousins for the kids to play with!  We also have my mom's famous and huge dinner with hopefully some of my Aunts, Uncles, and cousins joining in the celebrations!

Oh yeah in the midst of this we have had our puppy Hope for 2 1/2 weeks.  We have become potty trained once again!  She is our 5th member of our family and we love her! 

What a difference a year has made! 

Thanks for all your prayers and Christmas Wishes - we have heard from lots of people over the holidays!

Wishing everyone a very Happy New Year!

Love,
Karen and all

Happy Anniversary!

Yesterday it was my 1 year anniversary of being diagnosed with an inoperable brain tumour.  Today I got the results of my 1 year MRI - To everyones delight and surprise it has shrunk yet again - so much so that I have a hard time finding it in the MRI copy that I have.  I am so grateful and thank God for every day and for answering our prayers.

Once again we want to thank everyone for all their support, prayers, cards, rides, taking the kids and everything else.  We are certainly surrounded by wonderful people! 

Thank you and enjoy your weekend - we will!

Love,

Karen and gang

A Beautiful Fall

So far the weather has been great!  The kids had a mild Halloween - Luke Skywalker and Wilma Flintstone came home with waaaayyyy too much loot! 

Things have been quiet on the CancerCare front - MRI and appointment are the end of the month.  I am feeling the same - some days I am exhausted and some days I am not!  Probably how everyone else feels too!  Somedays I have numbness and somedays I don't.

Once again I'll update shortly after my next MRI.

Thanks for caring, thanks for praying!

Love,

Karen and all

61.......

My Platellets that is!  I am half way to normal - watch it I know what you are thinking!  I actually have 5 weeks off from CancerCare - a mini vacation!  Whatever will I do with myself?  Oh yeah - I have piles of laundry from closing up at Bird River, cards to catch up on, apparantly "there is nothing to eat in this house", you'd think they'd give their mom a break!  I guess that I have had 10 month break in their minds.  I never realized how tired and sore a body could get until this year.  I can't complain - I am alive and I thank God for that everyday!  I try to treat everyday as my last day and enjoy it to the best of my ability!  Someone asked me once "how can you be so happy with all that is happening?" - I replied "because I am alive".  The conversation ended fast!

I must go - I promised them soup for our sore throats and baking for breakfast!

Thanks for all the support, prayers and love that we continue to receive!

I want to wish everyone a Belated Happy Thanksgiving - I know that we have a lot to be Thankful for!

Love Karen

A New Angel.....

I have some sad news to share today, a fellow brain tumour patient, Ramsey, passed away last week.  He leaves a beautiful wife and 3 kids behind.  Please keep them in your thoughts and prayers.  For those of you with kids please hold them close and tell them how much you love them everyday!

Karen

New Orleans......

Well it's not sinking!  Thank goodness! Doug had a conference/meetings to attend there and I was able to tag along.

I had last been to New Orleans some 20 years ago - it was a different trip this time - much more subdued!  If you have never been there it is a fantastic city to visit, for short time!  We had a wonderful hotel, excellent food, the people are so friendly and so grateful for visitors.  With Katrina and then the economy crash they are still struggling.  At one restaraunt we overheard 2 waiters talking about how the love it when it is busy - and it was packed that night!  There are still vacant high rises/ houses and buildings with windows smashed and blown out from the hurricaine.

My highlights were, of course getting permission from CancerCare to travel, finding wonderful people to care for the kids while we were away - Thanks so much - eating great food - even if a bib was required, the hustle and bustle on every street, the music that filled the air, riding the street cars - it was like stepping back in time, and of course my favourite - getting to spend time with Doug!

Thank you once again for all you do for us.  We are so lucky and grateful for every day! 

Love,

Karen

Seasons are Changing.......

Fall has always been my favorite time of the year, I love the colours, covering my plants - to try to save them for a few more days (weeks as Doug would tell you), the cool air, and this year the fact that it has been almost 10 months since I was diagonosed - and I am still here!  I am grateful for every minute that I am alive!  I have been feeling stronger each day.

 I was at CancerCare for blood work today - some things are up, some are down - nothing too bad.  I managed to squeeze in a visit today with a friend I used to work with & the gang in ER!  I miss that place - well really the people in it!  What a great bunch!  I was reminded that I still have not made the radiation mask into a flower pot - something to hopefully do next spring.....

Sorry that I have negligent with the Blog updates over the summer - but I guess `no news is good news`

Thank you for all of your concerns, prayers and love.  If you could please include Ramsey and Michelle in those prayers I would be very grateful.`

Thanks again,

Karen

Still can't run with scissors....maybe a brisk walk.....

Just back from CancerCare......  My platelets are up to 53 - thats the highest that they have been for months!  Thus the running with scissors comment! 

I also got the latest MRI results, my tumour has shrunk again!  We are thankful and will carry on as usual - next MRI is in 3 months - I'm sure that it will bring more anxiety for the whole family once again.  On those waiting days I feel like I am living on borrowed time.  Today I fell like I won the LOTTO for the next 3 months!

Thanks for all of the concern and prayers that come our way.  We couldn't do it without you!

Love,

Karen and all

La Belle Province!!!

We had a wonderful time on our trip to Montreal!  The wedding was exquisite!  It probably rivaled Will & Kate's!  The kids had so much fun - they both danced the night away till 1 am!  Mom and Dad had lots of fun too!  There were at least 3 other kids tables so there was no need for us to entertain them!  Merci Paul and Kat!  It was a wonderful night out!

Our friends from Moncton drove in so we spent Sunday afternoon and Monday with them!  The kids haven't seen each other for 2 years, but when we get together they always seem to click!  We saw the Biodome and enjoyed our visit!  Thanks for making the drive to Montreal!

We also had the pleasure of having Sylvie join us for dinner!  She originates from Quebec City area and spent at least 10 years living here!  We have not seen her for about  7 years!  It was like we were together yesterday!  Thanks for taking time to join us!

It's been a week of laundry and resting for me!  CancerCare next week for port care and blood work!

Thanks for keeping us in mind and thanks for all the prayer support that we have been receiving!

Off to the playground with the kids!

Love,
Karen and gang

111 & 41.....

That would be my hemogloubin and platelets!  Must be all the red meat I have been eating - BBQ season!

Sorry that I have been slow on updating the blog - but I am feeling better and my gardens, flower beds, kids and Doug all needed some TLC!  We spend a great Canada Day Weekend at Bird River.  Jen and I slept through the fireworks while Doug and Kris saw the display across the River from us!  It apparantly was quite nice!

The kids both got great report cards despite all the things going on this past 7 months.  I am so very proud of them both and a big thanks to all their teachers! 

Our summer plans include a trip to Montreal for Doug's cousins wedding - just got the OK today from CancerCare to go!  At my age who knew that I would need "permission" to travel!  My hair is coming in and I am going hatless.  My true colour is revealed!  I'm thinking of going platnium - something I always wanted to do!

I feel so blessed to have so many people supporting us and praying for our entire family.  Thank you all!

Have a safe and happy summer after the very long winter!

Love,
K and gang

Thank You Donors & Fellow Foofighters!

Well I did it - the 2.5 km Spring Sprint for brain tumor research.  I wanted Doug to bring the wheelbarrow to push me in case I didn't have the energy to finish!  He declined.  We had about 11 people join us - and we had a great time!  We also raised $6,050.00 - when we entered we had hoped to make around 3 grand!  Thank you all so very much for supporting what I think is an excellent cause! 

This week I was a little tired from the walk - doing next to nothing for 6 months will do that to you.  I did manage to get in some of my plants.  What I could get done in 1 hour now takes a day!  But I am so happy and grateful to be alive and able to do it!

So once again thanks for following along on our journey,and especially thanks for the prayers and all the support!

Love,

Karen and gang

Field Trips and Riding on School Busses......

I had the pleasure of going with my son's grade 2 class on a field trip to the airport....although a relatively a short bus ride it brought back those dreaded memories of riding the bus for 13 years!  Kindergarten was the best year as I was picked up right at my door.  The other years not so good!  We had one bus driver who was never on time and turned a blind eye to the high school boys, who often were involved in a fight of some sort!  Our last driver was so old and possibly blind - he frequently forgot to drop me off despite all of the shouts for him to stop.  We (the grade 12 girls) used to send the token grade 11 boy to the front of the bus when we were crossing Hwy 12 (there was no overpass then) to make sure that it was safe for him to cross!  Enough reminiscing - I survived the field trip and it's good to know that the bus drivers have improved!

I was at CancerCare this am and my blood is holding.  Actually my platelets are up to 30.  The really good news is that I don't have to go back till the end of the month!  My energy level is up a little so I am thankful for that!

This weekend we have the Spring Sprint - and so far if Sylvia is right the weather should be decent!  The kids are excited and so happy to have some of their friends join our team!  Thank you to all our supporters who are helping us reach our goal!

Once again thank you for all the prayers, support and encouragement!

Love ya,

Karen

MRI results

Saw Dr.S today for my MRI results.  It has been 4 months since I had to stop the chemo, I don't know if it is modern medicine, positive thinking or all the people praying for me, but the tumor is smaller again!  So we continue with no treatments and have another MRI in 12 weeks.  My blood counts are low but stable and I am feeling good to be alive again!

We intend to enjoy the long weekend and hope that you do too!

Thanks again for everything,

Love,

Karen and the gang

Dentists

I am finally starting to feel alive again!  I've even been puttering around the yard - doing nothing fast - but is so good to be outside!  Then Lucky me looses a filling.  It is off to the dentist today for hopefully a quick fix.  The last time I saw her she told me that if I ever lost that particular one I would need a crown.  Wish me luck!  I think I have a true phobia of dentists! 

I had another repeat MRI done yesterday.  I get the results on Friday. I am keeping my fingers crossed!

We have entered a team to walk (2.5 km) in the Spring Sprint with all proceeds going to the Brain Tumor Foundation of Canada.  If you would like to join us on the walk - let me know and I'll get the info off to you and yours.  Oh yeah the walk/run is on June 5th. I'll be the one at the end!

So once again thanks for all the love, support, and prayers that we continue to receive.  If you have any extra please send them to all the people who are battling the flooding - especially those along the Assiniboine River and in Oakville.

Love,

Karen and gang

104

No that's not my age.....but sometimes I feel like it!!  It's my hemogloubin!  It hasn't been above 100 since March....now thats something to celebrate....maybe I'll take an extra iron pill to reward myself!  I don't have to go back to CancerCare till next week for more labs - I love my weekends "off"!

It has been a very busy week around the house.  On Thursday our son turned 8!  We made smiley face cookies for him to bring to school and on his birthday it was also the school Spring Musical! It was a wonderful concert and it was great to see people! We got him LEGO and he is still busy trying to find the time to finish! He was working on it this morning!  I know what he'll be doing after school!

A big thanks to my hairdresser who made a home visit - my hair is starting grow back - but it  looked like a mad scientist cut my hair!  Neurosurgeons and radiation techs are not great hairdressers! I now have a sleek buzz cut  with bangs so it can grow back nice and even!

So once again a big thank you for all those prayers that are being sent our way!

Love,

Karen and family

The Royal Wedding

Just like the Queen, I too have nice hats!  (thanks to all my hat suppliers!)  The good news is that I now have stubble!  (on my head!) 

There was an opening at CancerCare for tomorrow, so I now will spend the day getting 2 units of Packed cells.  I am looking forward to the boost in my energy level already!  I have been feeling really tired over the past 2 days.  Our bodies are amazing machines - for you none medical people - my hemoglobuin is 75 - or almost 1/2 of normal. 

I did make it to my son's French Play today - they did a fantastic job! 

I don't think that I have thanked all those wonderful blood donors for a while - so for those of you who give - Thank You once again!

Hope you have a great weekend.  Stay safe and thanks for all the thoughts and prayers that are coming our way!

If anybody missed the Royal Wedding - I PVR'd it!  Anytime you want to see it - come on over!  I keep watching the coverage on different channels!  The life of the unemployed!

Take care,

Karen

75.......

Evidently a hemogloubin of 75 is the magic number!  I need 2 units of red cells.....looking forward to the extra energy already!  Bad news is that they can't squeeze me in until next week Monday and Tuesday.  I'll be fine, a little pale, a little tried, but fine! 

I am hoping to to accompany my son's class tomorrow (weather dependant that is!)- they are going on a walk at the Legislature for Cancer.  His teacher in her spare time dresses up as Daisy Dafffodil, the mascot for the Canadian Cancer Society.  They are learning about illnesses and healthy living in their health class, thus the topic of cancer.  My daughter is very envious and thinks that she too should be able to go!  I told her that it's not all fun and games when you get to grade 4!  I'll keep up posted if I go or send poor Doug!

It is so nice to be able to get outside and enjoy the beautiful spring weather that we have been having!  Thanks again for all the prayers that have been sent our way.

Enjoy the day,

Karen

How low can I go???

Well I spent the morning at CancerCare today. (thank you to my drivers) I had yet more blood work done.  Dr. S is away so Dr. H is covering for him.  My Hemogloubin dropped to 78 - poor Kim spent the morning trying to arrange time for a transfusion for me only to be vetoed by Dr. H - cancelled all of her hard work - as he thinks that thigs will fix themselves with time.  I do feel a little slugish today, but I aslo have not been sleeping that great a well!

The good news is that my platelets are slowly coming up on their own - today they are sitting at 23!  (normal is 140-440) This means that I have the rest of the week off and don't head back to CancerCare till next Tuesday! 

We want to wish everyone a safe and Happy Easter! 

Thanks for everything - once again!

Love,

Karen and all

The New Normal!

I am just back from my outing to you guessed it - CancerCare!   I was initialy scheduled  for another transfusion on the weekeend.  That has been cancelled as the hematologist feels that my
bone marrow is slowly recovering.  My hemaglobin is up to 85 (normal 120-160).  The big excitement is that my platelets went up to 24 (normal 140-440)! He feels that these numbers will keep going up, but never get up to "textbook" normal.  Hey I'm just happy that I am not dizzy anymore!  I was tired of feeling like a blonde!  It doesn't take much for me to get excited these days!

So the plan is sit tight and more blood work next week, and to enjoy the appointment free weekend!!!!

Thanks for all the phone calls, drivers, visits and of course prayers!

Love you all,

Karen

A very long week!

Last week was a busy one - I think I spent more time at CancerCare than I did at home.  I had my port inserted (a permanent IV-tunnelled in my chest cavity) on Monday.  It was still too bruised and sore to use last week - It is getting better so I am hoping that this week they will be able to use it.  Which would be nice as the last time I needed an IV it took 5 pokes!  I used to have really nice fat veins!  Another thing that I miss!

My blood work is holding and I don't have to go back to CanerCare till Wednesday!  Then I see the hematologist again, have more blood work done and see if he has any words of wisdom!  My Oncologist thinks that my bone marrow is slowly recovering and I just need to be patient!  We all know how hard that is for me to do!!!!

All in all I am feeling a little stronger and I do have a bit more energy.  I even baked cookies yesterday and promised the gang homemade muffins for later on today! 

Thanks for all your thoughts and prayers once again!

Love,

Karen and all

Sorry for the delay!

Things have been a little busy over here with the start of Spring Break.  Yesterday the kids and Doug, and my sister went swimming while I nappd and visisted with my mom!  We have company in today - so what I am saying is don't worry if it takes me a long time to post another entry or to return a phone call.  It just means that we are busy and hopefully having some fun! 

On the blood work side of things I have not had a platlett transfusion since last Friday and today they are sitting at 45!  Best that they have been in a long time.  My hemoglobin is 93!  My WBC's are so good that the hematologist stopped the neupogen!  Murphy's Law - I just renewed the prescription!

So the plan for this week is to recheck my bloodwork prior to the weekend and possibly get a transfusion of some sort as I am scheduled for a porta-cath insertion next week.  Wish me well!

Have a safe Spring Break and hopefully you can find some time to have some fun with the kids.

Thanks for all your thoughts and prayers,

Love ,

Karen

A Busy Week!

It's hard to believe how fast a week can come and go!  It was another whirlwind week!  Last week on Sunday we went to our daughter's beautiful choir concert.  On Thursday we had parent teacher interviews at the kid's school.  It was my first time in the school since I was diagnosed in November.  I miss being there!  Yesterday was the kids curling windup - I only lasted about 20 minutes - It was far too noisy!  The noise is still one thing that really bothers me!  The kids were both excited and very proud as they both came home with a trophy!  (every kid came home with a trophy!) 

On the Cancer Care front I went on a field trip to St. B Cancer Care on Monday as HSC had no room at the Inn! I had 2 units of Packed cells as my hemoglobin fell to 71.  I was back at HSC on Thursday bright and early for more platelets as they were down to 10.  All things considering not too bad for me - they often fall to the single digits!  My post transfusion platelets were 34!  My WBC's 6.19 - which is normal.  My hemoglobin hit 100!

Once again a big thank you for all the friends and family who have been thinking of us, praying for us and helping us.  We would be lost without you all!

Love Karen and family

March 12 - "A Delicate Flower"

It was back and forth to CancerCare only twice this past week.  On Monday I had more platelets - they only fell to 23 but there were platelets in house that would only last 'til Tuesday so instead of wasting them they topped me up - just like adding a litre of oil I guess!

Friday was a difficult day.  It was to be my PICC line insertion day - something I was looking forward to.  Finally no more IV pokes/blood draws.  After several attempts and what felt like days they were unsuccessful.  Apparently I have very "tiny vasculature" - thus the "delicate flower" heading!  So now the plan is to have a more invasive Porta Cath insertion done in the near future.

On the positive side of things I have been feeling pretty good - it is amazing how one's body can compensate - the first time my hemoglobin dropped I felt dizzy and weak.  Today with my hemoglobin of 82 I feel "normal"...whatever that is.  Another blood transfusion is planned for next week.

On the family side of things the kids both got excellent report cards and passed their swimming levels.  I am so very proud of them and was able to give them a hug.  It has been a difficult few months around here and they seem to be pretty resilient to the ups and downs that seem to always happen.

Thanks as always for everyone's thoughts and prayers and calls and visits (which are really special now that I can have visitors again).  It's taken a few days to get this post up but another one will follow in the next couple of days.

Love
Karen

A new reason for Hope!

Today was another busy day at CancerCare - we had to be there for 9am - the kids had no school so with them in tow we were off.  My platelets fell this am to 7 - not too bad for 5 days post transfusion.  My record was immeasurable once!  I had 1 unit of platelets and my 30 minute post transfusion level was 56.  Let's hope my marrow starts producing.  My hemoglobin was actually up a little on its own and my white blood cells are approaching normal!

The kids also had a fun outing today as their favourite "retired" baby sitter and her little girl took them for most of the day!  Thanks so much!

Doug met me back at CancerCare for lunch and then to see Dr. S for the MRI results.  I was dreading this day so much - I had convinced myself it would be more bad news.  The MRI showed that the chemo hit the tumor too and not just my bone marrow.  The tumor is still very much there but it has shrunk significantly.  Now we need to get my blood stable before he determines the next treatment.  It may be more oral chemo and/or IV chemo.  I know we still have a very long road ahead of us, but today was an uplifting day!

I know many of you have been praying and keeping us in your thoughts - we don't know how to say thanks - but know that we appreciate everything that everyone is doing for us.  We would be lost without you all!  Hope you continue to keep us in your prayers as we move to the next stage.

God bless you all!

Love
Karen and family

OUT FROM BEHIND THE MASK!!!

It is official - I am mask free as my neutrophils climbed to 0.94 (normal is 1.8 to 5.4 but I was at 0.0!)  I still need to limit visitors and avoid crowds, etc, but I can have a healthy friend over for tea!

On the downside my marrow is still being a little on the lazy side and my platelets only got a little bump from Sunday's transfusion - they are now 15 (they have been undetectable in the past) so I will be needing a transfusion some time this week.

All and all this is the most exciting news we have received in a long time!

It will be a busy week full of medical appointments - I have a follow up MRI and then will see Dr. S for the results Friday.  He told us that in most cases the tumor size will remain the same or look a little larger - but he looks for signs and symptoms of improvement.

Sorry for the long gap between postings recently - we know many of you check often so we'll try not to let it happen again!

Thanks again for all the thoughts and prayers - we really appreciate it!

Love,
Karen and the gang

Field Trip Day (Sunday Feb 27 - I know it's late!)

Today I got to go to CancerCare for an all day outing.  Doug diligently packed my lunch and back pack this morning and sent me on my merry way for a marathon of blood and platelet transfusions.  It was either that or come in today, Monday and Wednesday.  My ride was on schedule and they will be back when I give them the word.  So far the platelets are done and I am half way through the first unit of packed cells.  I got here at 0800 and should be done by 2:30 or 3:00.

As the hematologist predicted my bone marrow is still suppressed by the chemo and it will be a long recovery process.  I sense I'll be back for more blood products.  There was good white blood cell activity though.  On the good side my neutrophils are still slowly climbing.  I just need them to rise by 0.02 to get out of the bubble zone!  Rise, PLEASE rise!  I also have some other various blood levels that are actually getting better too!

Other than feeling very tired and a little light headed (the blood will fix that today) things are picking up.  Although it may seem at times like it isn't!

I have a follow up MRI later this week to reassess the tumor.  Dr. S told me not to be surprised if it has not changed in size, as often they don't - the radiation and chemo destroys the genetic make up of the tumor.  He looks more at symptoms and most of mine have resolved or gotten better.  So this week I am hoping and praying for a good MRI report.  We will keep you posted.

Once again thanks for all your thoughts, prayers and support.  As soon as I get the OK for visitors (next blood work is on Tuesday) I will be making calls!  Miss you and love you all so much!

Love,
Karen

Ground Hog Day

It's been another fun week of being driven back and forth to CancerCare - my only outing.  I had 2 units of packed cells and 1 unit of platelets this week.  Today they sent me to a hematologist for a second opinion.  "That is a special blood doctor"...I feel like Mr. Rodgers teaching his new word of the week!  Very nice man but he had the pleasure of doing a bone marrow biopsy today..."not a nice procedure"  Mr. Rodgers would never do something like that.  Apparently it appears that my marrow is slowly starting to recover.  Tomorrow I get to start Neupogen injections two times a week (to stimulate white blood cell growth).  I'm sure I'll be able to do it?!?  Who did I have to do that I.M. on in nursing school - I know I chickened out!  Was that Joce or Lise?  Can't remember!  I'm sure you do!  And if I can't do it I'm sure Doug can!  Adding machine or injection - same thing right?

Last week I also managed to get a "mystery rash"  It started on my face and has spread to my entire body.  It is sometimes red and raised and very itchy.  Dr. S wasn't sure what it was but today the hematologist's nurse took one look at it and said that's a "Septra rash - are you still taking it?"  Fortunately it was stopped on Monday.  At least now I know what it is!  Once again my luck!  The "curse of the nurse"

So that has been my life lately.  This week felt like Ground Hog Dog everyday.  Just not as fun as the movie!  Today has left me a little more optimistic about the future.

Thanks again for all the prayers, support and love that have been coming our way.  Sorry for not returning all the phone calls.  This was a difficult and frightening week for me

Thanks again!

Love,
Karen

Feb 11 - Happy 50th Birthday BOB

I would never get away with doing that if I wasn't sick!

Well it seems to be like "Ground Hog Day" over and over at our house!  I was back at CancerCare today for more platelets (supercharged ones again!)  They were going to "expire" at 2400 hrs tonight so once again good old Dr. S didn't want to waste them!  Yesterday my platelet count was 20 - they only live for 3 days so he wanted to make sure I was charged up for the weekend!  Party time! NOT!  I still am "Bubble girl" as my white blood cells are still next to nothing.  I am very tired of wearing my scratchy masks everywhere I go!  I keep thinking my numbers should be up....I am getting kind of nasty and grumpy....I think I need a telemarketer to call so I can take my rage out on them!  Oh yeah, my scratchy masks have given me a lovely rash on my face - it burns!  Lucky Me!

I do feel a bit stronger and better today.  My nurse assured us that this happens and can take a very long time to correct itself!  But it does correct itself eventually!  I unfortunately am not a Patient Person so this is a test that I am not enjoying!  If only there were Coles Notes I could brush up on!

Once again thanks for following along this crazy journey with us!  Thanks to my family, drivers, and for the phone calls, e-mails, cards and especially prayers that are being sent this way.  Will keep you posted

Love
Karen

An answer.....

Well here we go again - sitting at CancerCare and writing my blog!  The folks at Canadian Blood Services finally have some answers for good Dr. S.  I had a whack of blood work done on Friday - the results came today and I apparently have antibodies - which explains why my body has been chewing up and spitting out the platelets.  I now will get antibody matched platelets - aren't I special?!  I always knew I was a Delicate Flower!  I am having yet another platelet transfusion - my platelets were 17 this am - not really low enough for a transfusion but there was a bag with my antibodies that would expire tonight @ 2400 so he thought we should use them up!

Otherwise I am feeling not too bad - tired of CancerCare being my only outing.  Still the "masked lady" as my white blood cells are 0.24 (normal is 4.5 - 11.0).  They are slowly rising  - just not in the safe zone yet.

It is like old home week here in the chemo unit - who would think that after almost 26 years, I'd run into 3 (yes three) nursing classmates who all work in this unit at CancerCare and were all working today....too funny!

I actually get a "day off" tomorrow to stay home then we'll see on Thursday what these latest antibody matched platelets did for me.  Thanks as always to everyone for all the continuing good wishes, support, prayers and everything else you are doing for us - you have no idea how much it all means to us!

Love,
Karen et al

After Radiation

Well I finished radiation last week Friday.  I still have a little bit of the radiation burn thing happening - they say it can last 2 weeks post treatment.  I still am using "diaper rash" cream on my head!  It works to stop the burning...not the best look though!

It has been a discouraging week for me.  I've had 2 platelet transfusions and still no luck with them sticking around.  Today I had a "special" batch just for me (anti-CMV, etc, etc).  My CancerCare doctor talked today with a leading chemo doctor as to the best platelets to give me.  Thus I got the special batch.  The staff here say they always come back.....but for us special people it always takes longer.  Oh yeah, I am getting another 2 units of packed cells over today and tomorrow.  My hemoglobin dropped to 78ish - this morning we knew that it was low - I felt weak and tired.  Doug called Kim (my nurse at CancerCare) and she said "come on down" - it was just like being on The Price is Right - no cars - just blood products as prizes!  Again a big thanks to all the blood donors out there!  Keep up the good work!

I've thanked all my drivers a few times already but today we also thought we should thank all our kids drivers - whether it is to or from school or choir or sports or anything else, you know who you are and we really appreciate you taking such good care of them to get them where they need to go when we can't and making them feel so welcome - thanks so much!

That's all for today.  Thanks to everyone for all the love, support and prayers you continue to send our way - you have no idea how much it means to us!

Love,
Karen and the gang

The planter

 The question has been asked what was the radiation mask aka the soon to be planter like?  Well here's a couple of pictures - each day for my radiaton treatment I layed on the table and they placed this over my head and attached it to the table with the black screws.  The markings were used to line up the radiation machine with lasers and then I got the treatments in the exact same spots every time.

More blood work on Wednesday

Graduation Day!

We have had a wee bit of a hectic week with my blood work.  Had a unit of platelets on Monday but unfortunately didn't get much of a bump in my numbers and will probably be back on the weekend for more.  I have more blood tests tomorrow - maybe they are just taking too much blood?  Now I sound like those crazy old ladies that always ask after a blood test "did you leave me any blood?".  Yesterday and today I also had 2 units of packed cells (one each day) as my hemoglobin hit 78.  I actually do have some colour back in my face and feel better.  Thank you all you generous blood donors out there - it truly is the Gift of Life!

There is some good news in my labs - I did get a slight rise in my white blood cells (germ fighters) and my monocytes - they are still no where near normal but apparently they are the first to rise so my good doctor tells me!.  I'm still the "girl in the bubble".  I need to wear a mask in public, limit visitors and avoid anyone who is sick.  I know lots of you want to visit but you need to wait until I get the OK from my doctor.  He thinks things are about to turn the corner - how I pray that he is right.  He is a very smart man and I trust him.

Tomorrow is also a big day as it is my last radiation treatment (Graduation Day!)  I'll miss going there for my daily weekday outings and visits with the staff there (not to mention with my drivers!)  I do get to bring my radiation mask home.  We plan to use it as a planter this summer.  You will all have to come over and watch the slugs and worms crawl over top of my face shaped planter!  It should be fun!  See my humour will never run away like my platelets and red blood cells.

Thank you all once again for all your prayers, kind words, thoughts and love that are being sent our way.  I am so fortunate to have such loving family and friends!

Love,
Karen

PS - I miss you all so VERY MUCH and can't wait to see you when I am out of the "bubble"

Friday update

Good news at home!  Our son came home today to tell us he jumped 3 reading levels - we are so very proud of him!
I forgot last week to say that our daughter was in her school finals for the national Canspell Spelling Bee - she was one of 32 finalists from Grades 4 to 8.  Unfortunately she was eliminated on the word "preferable" (a grade 7 word apparently) but we are so very proud of her too!

After today's blood work my doctor thinks that if I lay low and stay healthy things will start to pickup by the next round of blood work on Monday....keep your fingers crossed (and toes too!)

Thanks goodness that they use # 26 needles for IV starts and butterflies for lab work.  So to my fellow nursing friends the next time the lab calls to find out what size needle you used for blood work tell them to go away!  I must be feeling better as I am beginning to RANT now....another good sign?  I hope so!

Thanks again to all my family and friends for your positive thoughts and help and prayers that keep coming our way!  I'd be lost without you!  And I can't wait to see you all once I am out of the "Bubble"

Love
Karen and all

January 19th - update

Got my blood results today.  I'll start with the good news.  After the platelet transfusion yesterday my numbers increased to 36 from 14 - still not ready to crack open the bubbly or run with scissors but a start!

I guess unfortunately where there is good news, bad news must follow.  My white cells (germ fighters) are still running away (0.55) (normal is 4.5 to 11.0) - who can blame them  - I wanted to run from the chemo too!

I have been wearing a mask when I am out of the house.  I have quarantined myself in my room as the kids are just getting over colds.  Boy do I miss being with them!  For those of you with kids please give them extra hugs and kisses tonight.  I long for the day that I can cuddle in bed with them.  This is the hardest part of my fight - I miss them so much!

OK, to get back to something happy and funny.  I also regret never learning to "moonwalk" - as I have decided to call myself Michael Jackson.  Maybe once I am out of my so called "Bubble" I'll take dancing lesons and learn the "moonwalk"

Thanks again for all your prayers and positive thoughts.  I'd be lost without you!  Can't wait to see you all soon

Love
Karen

January 18th - Week 5 of radiation

It has been a busy few weeks of being driven around to CancerCare. (that's pretty much all I go is back and forth to CancerCare) I am calling myself "Miss Daisy".  thanks to all of my wonderful drivers!  Just know how grateful we are!  Thanks again!

Well things were calming down in the house after 3 weeks of radiation and chemo...then I started a little sniffle!  Oh boy, that little sniffle knocked me down hard!  My platelets (those sticky things in your blood that form a blood clot) crashed and burned.  I needed a blood transfusion on the weekend.  I felt a bit better but by Monday the next blood test showed them back in my boots - this time my white cells (those infection fighters!) decided to join them too!.  I guess they don't like chemo!  Can't really blame them!  I'll be back for yet another platelet transfusion.  I was worried the first time about having a transfusion reaction.  (remember too much knowledge is not always a good thing!)  My chemo treatment that was suppose to run concurrent with the radiation cycle has stopped 2/3rds of the way through.  My radiation continues and my doctor reminds me I had a full 4 weeks of chemo - some people don't get that far.  Something to be grateful for.

I need to end this on a positive note.  My typist had it much easier this time as my handwriting has improved - unfortunately it's back to its old messy self but he can read that!  Oh yeah, the numbness in my fingers is less too!  It seems like I see/focus a bit better too!  So in the midst of the blood count issues we also had some good things happen too!  We have to be thankful for these

Thanks again for all the positive thoughts and prayers that are being sent this way.

We will keep you posted

Love,
Karen and the gang

Welcome - January 7

Hi, I am a 40 something year old wife and mom of 2 beautiful kids. On November 24th I had the pleasure of being diagnosed with an inoperable brain tumor.  Oh yeah, I am also a nurse so please note there may be sick medical humour in my posts - that is my way of coping with all this garbage!

I will try to keep it family friendly - my kids have picked up a few of my potty words already! (sorry teachers!)

People have been asking me what it is like?
# 1 it sucks, but it is also life.  I have always been a grab the bull by the horns, enjoy the ride kind of person.  We can't pick our path in life but we can choose how to live it.  I am choosing to live life fighting this big bad brain tumor, it is part of me.  Don't get me wrong - I don't like it.  I want it out but surgery is not an option and I could be really, really blonde if they tried!  I apologize to all my natural blonde friends who might be reading this.  Surgery could seriously result in my needing 24 hour care too!

I have had a very positive experience with CancerCare.  I cannot say enough good things about them.  They are the most caring and dedicated staff around.  I know that my fellow ER people will be shocked but they are amazing.

How am I feeling?
Pretty good, I have minimal weakness to one arm.  I have had no ill effects from the chemo and radiation other than lots of hair loss.  Thank God fo my iron clad stomach!  I now am acquiring a collection of nice hats!  My biggest complaint is having to use baby shampoo...yuck! (that's not too bad!)

I also have a really hard time getting to sleep.  Apparently people with brain tumors have a disturbed sleep-wake pattern...and boy do I ever!  Fortunately my good doctor knows the right sleeping pill Rx!

So that is what life in our house had been like this past month and a bit.....CancerCare for radiaton and chemo pills at home.  My memory is not that great so I am sorry if I forget or seem a bit foggy.  A big thanks to all the hard working people at CancerCare

Stay tuned for updates

Thanks for the support and prayers
Karen and family