Days 98-100

Well, I made it to day 100, but not without difficulty.

Tuesday, I had my regular clinic appointment and they kept me in the hospital for 2 days.

Lately, I have been having more bad days than good. Most of the bad days I have just been tired and overall just not feeling well, but I have had a few days where I have been really sick and vomiting. Tuesday was one of these days. When my doctor saw me on Tuesday and I had been sick to my stomach all morning he decided that he needed to run some tests. They started with an ECG and a chest x-ray which were both okay. Then I spent the rest of the day waiting around in the cancer clinic for there to be a room available upstairs for me.

The next morning they sent me to endoscopy to take a look in my stomach and do some biopsies to see if they can find out why I've been getting sick. I've had this procedure before and while they said they sedated me last time, I was fully aware of what was going on and extremely uncomfortable. I told the doctor this and he said he'd be generous with the sedatives this time. Well he wasn't lying. I have no recollection of the next two hours of my life, but I've been told I was quite entertaining.

Kendall sweet talked the doctor into letting me out of the hospital the next day since I had gone two days without getting sick and was eating and drinking well, so I am back home now. They hope to have my biopsy results by Tuesday when I go back to clinic (but I'm not holding my breath), however the theory is that I STILL have graft vs host disease. They expected it should be gone and had been weaning me off the Prednisone, but as the dose got lower the symptoms were getting worse... So this means that I am back on a high dose of Prednisone and will most likely have to stay on it for at least another six months... Along with the hunchback, puffiness and extra chins it has given me.  But I'm not dead yet!

Light the Night

I participated in the Light the Night walk last Saturday accompanied by my family and it was a great night! Thanks to the generous donations we received our team raised over $6000 for the Leukemia and Lymphoma Society of Canada and were the 6th highest fundraising team in London!

Thank you so much to everyone who sponsored me. If you still wanted to contribute, the online site is still open. You can click HERE to go to my personal page to sponsor me for the walk.

ONLY 2 DAYS LEFT!!!

Please help by sponsoring me in the Light the Night Walk for the Leukemia & Lymphoma Society of Canada.

On October 20th I will be walking with my family to benefit all 90,000 people affected by blood cancers in Canada.  All those that will be diagnosed every 34 minutes, And those, who every 72 minutes, will die.

Click here to sponsor me in my walk.  Every little bit helps.

Thank you.

Day 78

Another doctor's appointment yesterday, which means another day spent in a hospital waiting room. The good news this week is that my CMV level is negative which means the virus has gone dormant again and I don't have to have my IV anymore. So, next week the doctor is going to decide if I can have my hickman line taken out (attempt #2).

Although I have had the dose of my medications cut back, due to the length of time I have been on some of them the side effects are getting worse.  The prednisone (steroid) gave me "moon face" a couple of months ago, but now I've added "buffalo hump" to the list. Prednisone actually redistributes fat in your body to cause a round puffy face and a hunchback which I now have both of. Very cute. Another one of my meds, cyclosporine (immuno-suppressant) is now causing hair to grow on my face. Even cuter. In addition to all of this, it's been almost 3 months since the chemo stopped and I am still completely bald. So the only hair actually growing on my body is on my cheeks.

Only 17 days left to sponsor me for the Light the Night Walk... Please click here to sponsor me!

Day 70

I just got home from clinic and it was the quickest appointment we've had yet!  It probably helped that we were there an hour early too. 
Anyway, the good news is that the doctor is lowering my dose of Prednisone (steroid).  Once I'm completely off that my face should go back to normal which I'm really looking forward to.  Right now I have 'moon face' caused by the Prednisone redistributing fat in my body to my cheeks and jowls.
The bad news is that the IV I was supposed to be on for 2 weeks, then was extended to 4 is now going to continue for another 2 weeks.  I still have the virus active in my system so I have to continue the medication longer than expected.
Kendall got more attention than I did at clinic today though.  He's been sick for the last few days, so they were more concerned with him and what he has to make sure I don't catch it.  He has a low grade fever and has been back and forth with sweating and chills.  He saw his family doctor who told him it was just some kind of virus and that I should be fine.  My doctor took it a little more seriously and did a test on him to confirm exactly what kind of virus it is.  They did a nasal swab that they told Kendall 'wasn't pleasant'.  The 'swab' they used was long and thin and went in through a nostril all the way down to his throat.  The look on his face when it went all the way down was hilarious!  The things we do for love.  So hopefully by tomorrow we'll know what he has and either be able to treat it or they'll give me something that will prevent me from getting it too.
That's all the updates we have for today.  Back to clinic next week and hopefully nothing eventful happens between now and then.

September is Blood Cancer Awareness Month

Please help by sponsoring me in the Light the Night Walk for the Leukemia & Lymphoma Society of Canada.

On October 20th I will be walking with my family to benefit all 90,000 people affected by blood cancers in Canada.  All those that will be diagnosed every 34 minutes, And those, who every 72 minutes, will die.

Click here to sponsor me in my walk.  Every little bit helps.

Thank you. 

                                                         

Day 59

Well, it's been an eventful couple of weeks... When I last posted I had great news about not needing Winston and getting my hickman line out.  Change of plans. 

Kendall and I had a nice Labour Day weekend planned.  Friday in Grand Bend with his parents, then Saturday in Goderich with my family.  While we were in Grand Bend on Friday I got a call from my doctor.  Apparantly I have CMV.  This is a virus that most of us have in our systems living dormant, however in people with comprimised immune systems it can cause serious illness.  My doctor wanted me to come home to start treatment right away.  So, first thing Saturday morning I was back at the hospital to get my first dose of medication.  Luckily, I hadn't gotten my hickman line out yet, so I'm not getting poked with needles all the time and after they made sure at the hospital that I didn't have any reactions to the medication it can be administered through IV at home.  What was supposed to be a two week course of meds though is now looking like it will be four weeks.

Other than that things are moving along as expected.  Hopefully there won't be any more major complications but I'm just taking it one day at a time.

Day 44

I'm awake early again, as I have been every day lately.  Not sure where this has come from as I was never a morning person, and it's certainly not from Chelsea!  I'm glad to be up early today though to watch Robin Roberts final show on GMA before her stem cell transplant from her sister.  She looks amazing and she has brought so much awareness and inspired so many people to volunteer as donors.  Good luck Robin!

I got some good news at my clinic appointment this week... Winston is out of my life!  I no longer have to be tied to an IV every day at home.  My skin is getting a lot better.  It's still not cleared up, but is finally starting to go away (after almost 5 weeks).  And thank you to my doctor for quickly getting the government to approve coverage for $4000 worth of drugs that I needed.

My energy level is still incredibly low.  I slept pretty much all day yesterday.  It does go up and down and I've been able to get out of the house a little, but the ups still aren't very high at all.

I'm almost halfway to the 100 day mark!

Light the Night Walk

On Saturday, October 20 my family and I will be walking in the Light the Night Walk for the Leukemia & Lymphoma Society of Canada.

Please click here to view our team page and sponsor us for the event.

http://my.e2rm.com/TeamPage.aspx?teamID=338321&langPref=en-CA&Referrer=http%3A%2F%2Fwww.facebook.com%2F

http://youtu.be/4g-XsCTYY8E

Day 29

I've been home for a couple weeks now and things are overall better than they were when I left the hospital, but my days are up and down.  My energy level is pretty low, but I have been able to get out of the house a few times. 

I have needed IV hydration and potassium at home, so I have my very own Winston in my living room and a nurse that comes to hook me up every day.  This lasts about 4 hours each day and will hopefully be able to stop soon.

my morning coffee

Another issue I've had is my skin.  I've had a reaction to one of the drugs I was on which gave me a rash all over that a week and a half later is still lingering.  I have another rash on my chest that may be Graft VS Host Disease.  It was biopsied yesterday and I should have some more information at my clinic appointment next week.  I have had some numbness in my hands and feet that comes and goes and my skin feels so raw that it hurts to get in the bath.  My lips are dry and cracked and nothing will moisturize them.  And by far the most painful issue is yeast infections in my underarms.

Things are slowly getting better and I know I just need to be patient.  It feels like it's been a long haul so far, but I'm only 29 days in and have a long way to go still.  I'm just taking it easy and reminding myself that all of these issues are temporary and I can get through them.

Day 18

I've finally been discharged from the hospital.  I'm still not feeling all that great, but a lot better than I have been.  Over the last week and a half I have had all kinds of issues.  My throat still hasn't gotten better, I spontaneously vomit (no sign of nausea though) and I overall just don't feel well.  But it's so good to be home!

The first week

Today is Day 7 and I've been on a steady decline since the transplant.  The first couple of days were okay, then as my blood counts began to drop the problems started.

A couple days after the transplant was when the 'tummy troubles' started.  At first I thought this was just a side effect of the chemo, but a test showed that it was Clostridium Difficile.  I won't go into too much detail about that, I'll just say that it has been horribly unpleasant.  My nurses now have to wear a gown and gloves in my room so that they don't transfer it to any other patients with compromised immune systems.  Visitors are still allowed and don't have to don the hazmat suit, but only if they're healthy and don't have anyone at home they could pass it to.

The next round of excitement was on Day 5 when I couldn't keep any food down.  I also noticed a little blood in what was coming up, but that was attributed to the sore throat I'd had coming on for a few days and the retching can cause tares.

Day 6 brought even more excitement when I spiked a fever.  Once I get a fever they have to do blood cultures and they have to poke me for that.  They do one set from my Hickman line, but a second set from a vein to make sure that there isn't an infection in my line.  After 3 needle pokes, they were able to get blood from a vein, only when my nurse tried to get it in the bottle for cultures, it had already started to solidify and couldn't be used.  Two more pokes later and they were finally able to get a sample they could use.

Day 6 also brought worsening of the sore throat caused by Mucositis.  I've experienced this before, but this time it is at the back of my tongue and down my throat.  It is also causing burning all the way down into my chest.  It is incredibly difficult to swallow and I now have a spit sucker (like at the dentist) at my bedside.

And today, Day 7.  The C Diff seems to be getting better.  I'm still running a fever quite often.  The mucositis is even worse, so they have switched all my meds to either liquid form or IV so I don't have to worry about swallowing pills and as of tonight, they've started me on TPN - so I am now getting my food through my IV too. Oh... And as of today, my hair has started to fall out.

Things can start getting better any day now...

Day 0

Well, my new birthday has come to a close.  The day was rather uneventful, which is a good thing.  Chelsea completed her second round of harvest this morning then I was given her stem cells in the afternoon.  Two bags in total and it took no more than an hour. Now we play the waiting game for Chelsea's stem cells to set up camp in my bones and get to work.  I've passed the first step on the road to recovery - and it's going to be a long road.

Day -1

They didn't require anything from me until evening, so I was able to spend the night before at home.  This was the big day for Chelsea, and luckily, because I didn't have to be in my room for anything, I was able to be with Chelsea during the harvest.

Things didn't go so well for her in the morning.  She is supposed to be hooked up to the machine with a large needle in each of her arms.  They got the needle in her right arm, but couldn't get one in her left.  My baby sister's vein's are too little.  This meant they had to have a central line put in her - not a comfortable procedure.  I will never doubt how much she loves me!

They finally got everything set up around 11am (3 hours late) and completed the harvest at 4pm.  They were only able to collect about 3/4 of what I need so she's back at it again for a second day.

Day -4 : -2

I wasn't able to update, as my eyes were still so out of focus from the medication that I couldn't stand to look at the computer screen, but basically all I spent my days and nights doing was sleeping in between meals.  To everyone's surprise, I have been very hungry - which is a good thing, so let's hope I can keep that up.

Days -6 & -5

The last two days have been pretty uneventful.  I am still having issues with my eyes from the Dilantin, so I have pretty much just been laying around with my eyes closed driftin in and out of sleep.  Things I would enjoy doing but cannot: read books, read magazines, plan my wedding.  Hopefully this will get better after a few more days.  On a positive note, I get to spend the night at home again tonight.  This will be the last night that is allowed to happen.

Day -7

I did not sleep at all last night.  I forgot how bright it is in a hospital room.  On top of that, the dressing for my Hickman line was too tight and pulling the skin and the cleaning solution was making me horribly itchy.

I woke up this morning feeling much betther though.  No more pain at the incision site in my neck, more like an overall ache, as if I've been punched in the chest.  I'm sure that will go away over the next couple of days.

Other side effect so far seem to be from the Dialantin (seizure meds) - blurring my vision (I'm typing this with my eyes closed and Kendall will proofread later) and making me a little dizzy.  I only have to put up with the for a few more days, and they may adjust the amount I'm getting tomorrow.

Overall my day went well though.  I had a couple of visitors and then got the great news that I was allowed to leave once my chemo was done running and spend the night at home.  So now I'm at home with my fiancee and my puppy for the rest of the night.  I'm a lucky girl!

Day -8

Okay, so I'll start by explaining the title.  You would think today would be day one, but it is not.  It is actually Day -8 because it is 8 days before the transplant date.  The date of the transplant is called Day 0, then they count up starting at 1 the next day.

So, back to the beginning and one day at a time...

Day -8 began with an early alarm clock and a fight to get out of bed... It was so cozy and I was cuddling with my sweet puppy for the last time in at least 3 weeks and was not looking forward to getting my day started.  Eventually I hauled my ass out of bed and took my Dilantin - a drug they gave me to start prior to starting chemo, as the chemo I'm now getting can cause seizures and this will hopefully prevent them.

Kendall had the day off work to take me to the hospital, so I got dressed and we hit the road (all 5 min of it from home to here) and arrived at my scheduled admittance time of 6:30am.  I got registered and then was ushered down the hall to Day Surgery to have my Hickman line put in at 8:00 am.

The Hickman line insertion is an interesting procedure from what I understand, although I couldn't see, nor did I care what was going on at the time... But here's what I'm told:  The insertion site is at my jugular which is where they cut an opening and thread everything through.  One end of the tube ends up in a large vein near my heart (superior vena cava) and the end with the ports (lumens) is brought out through a new incision in my chest.  This is all done in Radiology so they can see exactly where everything is going once it's inside.  Now I'm sure this procedure is a lot more complicated than the dumbed down version of the layman's version I was given first thing in the morning with no coffee in me and before the sedatives, but this is what you get. 

Here's what it looks like on the inside:

 And on the outside...

If you look at the two separate white spots, these are where they've packed the dressing at the insertion (top) and exit (bottom) sites.

After the Hickman was inserted I was able to be brought up the the 7th floor where I will set up camp for the next few weeks.  I was temporarily in a ward room with 3 other patients until my private room was ready.  I am required to be in a private room as once the chemo does its job I will no longer have an immune system (let's hope this works!).  After lunch and a quick cat nap, my room was ready for me to move in.  I have had my first round of chemo (Busulfan) which will continue once a day for the next 3 days before the switch to a different chemo drug.

That's all for Day -8.  Stay tuned...

making memories

I'm down to my last two days at home before I go back to the hospital and I've been making the most out of all of the time I have with my loved ones before the transplant.

In the last week Kendall and I had our families over for a backyard party to enjoy some time while I'm still feeling well and had a blast.  We had good BBQ and cold drinks and greata company.  Thank you to everyone who came - it was so great to spend some time with you all!

After the party, Kendall and I travelled up to our boat for a couple of days to relax by the water and enjoy the Canada Day fireworks on the beach.

Following our relaxing time at the boat, we decided to head up to Niagara Falls for some good old fashioned, cheesy, touristy fun.  We had a beautiful view of the falls from our hotel room.

After checking into our room, Kendall told me he had booked us something cheesy and touristy to do later that afternoon... Looking forward to some fun, I just went along with whatever he had planned.  We ended up going to beautiful Hillebrand Winery in Niagara on the Lake for a wine tasting, tour and dinner in their four diamond restaurant.

After dinner we walked to the Winemaker's Lookout to see the beautiful view of the vineyard where Kendall got down on one knee and proposed!

When we got back to our hotel room that night, we got to see the beautiful fireworks show on the American side of the falls (which Kendall will gladly take credit for as part of the proposal!).

The next day, we spent some more time having fun at The Falls, then took a detour on our way home to stop in toronto to see LMFAO at the Molson Amphitheatre.

After what is probably the best week of my life, I don't want to spend the next month or so stuck in a hospital room, but at least I will have a lot of wonderful memories to bring with me!

8 days to go

I've had all of my doctors appointments and everything looks good to go ahead with the transplant! Over the last couple of weeks my sister and I have had a bunch of tests done to make sure we're both healthy enough to go through the transplant. It started with a pulmonary function test. You'd think since breathing is something we all do all day every day this wouldn't be that difficult... Think again. Crazy breathing patterns, holding your breath and inhaling and exhaling as hard and long as you possibly can is extremely difficult. Luckily the technician decided my results were good enoughband didn't makenme repeat it all anfew more times. Next was the EKG and ECG. As it turns out I do have a heart... And it beats and everything! I saw it! Finally I had to collect urine for 24 hours (don't confuse it with the apple juice when storing in the fridge) and 14 vials of blood taken. At Chelsea's appointment she also had 14 vials of blood taken and a bone marrow aspiration. Odldly enough she handlednthe bone marrow better than the blood. Needless to say I love her a lot and may have to take her shoe sopping when this is all over. So now I am enjoying every minute of freedom until 6:30 am Monday July 9 when I will be admitted back into the hospital.

I have a date!

Well... I have a date for the transplant.  I will be going back into the hospital July 9 to start chemo, then the transplant date (day 0) will be July 17.  Then I will be in the hospital until the end of July(ish).

Between now and then I have several doctor's appointments - to make sure my body is able to handle the transplant.  Chelsea will have some tests done on her too... Including a bone marrow aspiration - which I wouldn't wish on anyone.  I guess this shows she really does love me!  Haha!

I've been feeling a lot better the last week or two... I only sleep about 10 hours a night instead of 12... I know it doesn't seem like big news, but that extra 2 hours I now have in my day means a lot!  I've been trying to work out and get into somewhat decent shape before I go back into the hospital.  Three weeks of laying in bed takes a toll on your body... I learned that the hard way last time.  The stronger I am going in, the stronger I'll be coming out.  Wish me luck!

I know it's been a long time since I've posted, but I've had a lot to think about over the last few weeks.  I have made the decision to have the transplant and am now waiting for the hospital to set a date.  It looks like it's going to be mid July, which means I'll be back in the hospital for most of the month of July.  My sister Chelsea will be undergoing some tests to make sure that everything is okay to go ahead with the transplant, then once we have the green light, I will be back in the hospital.  I will start with more chemo - very intense, to kill off all of my own bone marrow, then a few days later I will have the transplant, which is basically a glorified blood transfusion.  Then it's recovery time.  Most likely 2 weeks of recovery in the hospital before they can let me go home.  Then they say it's a minimum 6-12 months of recovery after until I'm back to normal (whatever that is).

This link goes over the procedure: http://www.cancercenter.com/stem-cell/stem-cell-allogeneic.cfm

ROCK [me] HARD PLACE

After months of waiting, I finally have more information about the transplant, however the decision to have the transplant is entirely mine.  For those who don't know, I can confirm that I may possibly be the most indecisive person alive - a trait that I thought I could pass off as a cute little quirk.  Not anymore.  I am now faced with what may be the most important decision of my life.

As things stand right now, I have completed the regular course of treatment for AML and am in remission.  That was the easy part.  Now I need to stay in remission.  If I chose to continue on with my life as if the last three months have been just a speed bump there is a 30-40% chance I will relapse.  If the cancer comes back it may not be beaten as easily next time.

I've said before that Chelsea is a match.  She is as perfect a match you can find aside from an identical twin.  The good news is that transplant cuts the odds of relapse in half.  The bad news is that transplant comes with its own pile of side effects which make the survival rate about the same as doing nothing at all.

Should I chose to go with the transplant I am looking at a long recovery process.  With stem cell transplants rejection occurs in the opposite way to a traditional organ transplant.  Instead of the host (me) attacking the foreign substance in the body, the graft (donor) attacks the host and we get what is called Graft versus Host Disease.  This happens when the donor stem cells see the new body as foreign and attack various tissues.  A small degree of GVHD is favourable in curing the leukemia, however too much can cause serious problems and in some cases, death.  I have my age and the fact that Chelsea is such a close match working in my favour, but no one can predict how a body will react in this situation.

If this wasn't enough to think about, I have to consider that the transplant will likely leave me infertile.  Oh... And one more thing... I mentioned before that my sister has her own health problems... There is a good chance that they will also become mine.

All this to consider and me with no crystal ball... Stay tuned...

Day 3...

I'm feeling much better and my arm has returned to a normal size but I am still being held captive in the hospital.  With no TV and limited internet, I have been left to go insane in confinement.  I am told that I will be released once my blood counts come up (who needs an immune system?).

I have been waiting (im)patiently since Sunday morning and this is all I have to show for it.

White blood cell count 0.7 and holding steady.  Hemoglobin slowly dropping and Platelets only went up because I had a transfusion and have dropped again since.  White blood cells are the infection fighters... so until they decide to do some work, I'm trapped.  I'm trying to will my body to produce more white blood cells.  Wish me luck.

Bye Bye PICC

Friday evening my arm was a little red and sore around the insertion site of the PICC line.  This has happened before and gotten better on it's own, so I wasn't overly concerned.  I went to visit my sister Chelsea and had a wonderful evening with her and her husband.

Saturday morning when I woke up, my arm felt worse.  It was a little more red, swollen and more sore than the night before.  After enjoying breakfast at IKEA and a quick shopping trip, Chelsea and I went back to her house to watch a movie.  During that time I noticed that there was heat around the insetrion site and it looked like some puss.  I tried calling the Cancer Clinic in London, but it was after hours, so we contacted a friend of Chelsea's who is a nurse.  She confirmed with a doctor that it definitely sounds like an infection (although I hadn't spiked a fever yet) and that I should get to the hospital sooner than later.

I drove back to London, knowing that if I did have an infection they would want to admit me and I would rather be admitted in my own hospital.  When I got home, I checked my temp - 36.4 - still no fever, but the pain was getting worse.  I called the number I was given for if I have any issues with the PICC line and spoke to a nurse.  She told me I would have to have a doctor look at it.  Checked my temp again - 36.9 - climbing, but still no fever.  I called the on call Heamotologist and told him that I think my PICC line is infected.  After explaiing all of my symptoms he told me to go to emerg and that he would make some calls ahead for me.

Once in emerg, my temp was 37.1 and I was told that the Heamotology Resident would be down to see me soon.  An hour later she came down and looked at my arm and said that she would probably have the PICC removed and that I would be admitted for treatment.  Another 2 1/2 hours later I was admitted back upstairs in oncology.  My PICC has been removed and I am on intravenious antibiotics.  Not sure how long they're planning to keep me here this time, but hopefully only a coupld days.

Infected PICC Line

Taking the PICC Line out

This is what was in my arm

The hole in my arm

Thank you to everybody who showed their love and support today! Your kindness and generosity is truly appreciated!

And a special thank you to Tony and the staff at Cibo Osteria for the amazing meal and all of their hard work.

Oncology Nurses Are the Best!!!

Flash mob hits cancer program

Round 3

I have finished what will hopefully be my last round of chemo... Now to recover from that.  I will have blood test twice weekly again with transfusions when necessary, and have been warned that there is a good chance my mouth will react the same way again.  Hopefully I can prevent it this time knowing how awful it was before... And if not, at least I now know how to reach a doctor that will help me instead of going to the emergency room again.

Still no news about transplant... Waiting patiently for them to get the test results and decide if they think it's something worth persuing.  So I will continue to wait for news while I cuddle with my puppy getting lost of rest and recovery.

bald chicks are hot

I'm sitting at home today waiting for a phone call from the hospital.  Next round of chemo should start today.  This may be the last round... If they don't want to do a transplant and if the cancer doesn't come back.

I haven't posted much about transplant because I still don't know if it's something my doctors will want to do.  It's very rare to have a match within your family - especially with only 1 sibling (I would never say I only have 1 sister, but medically, I guess I have 1 sister and 1 half sister).  The good news is my sister is a match!  Who knew we had that much in common?  The bad news is because of her own health problems, the doctors aren't sure if they can use her for transplant.  We are also still waiting on some test results from Toronto to know more about the specific Leukemia that I have.  They are trying to see if they can determine what the likelihood of me relapsing is based on the chromosomes that are effected by the Leukemia in my body.  Fingers crossed for good news!

Please keep my friend Boyd and his family in your thoughts and prayers.  Boyd is preparing for his own transplant early in May.  He is using an unrelated donor and the risks are much higher for this type of transplant.  I'm wishing Boyd and his family all the best... Stay strong!

Why NOT Me?

Everyone keeps telling me that it's normal to feel or think certain things, but I don't think anything is 'normal' once you hear the words 'you have cancer'.

I have been through so many emotions and thoughts, but the one thing that I haven't felt is 'Why me?'  I've heard so often that it's normal or okay to feel this way, but it honestly hasn't crossed my mind.  If anything, I would think 'why anyone?'.  There are so many worse off than me.  Why should young children get cancer?  What have they ever done?  They haven't even had a chance to experience life yet.  I have met so many wonderful people so far in my journey and none of them deserve to go through this. 

They say one in three adults will experience some form of cancer in their lifetime... So the real question to ask is 'Why not me?'

I'm starting to think people are enjoying this...

Day 4 of wanting to cut out my own tongue. If I had to describe the pain I'd say it's like my tongue is sliced open and swollen with an inner ear infection and strep throat. Sounds fun, eh?
Can't talk at all today... I think my loved ones are getting some enjoyment from silent Brandy.

7 hours in the hospital can feel like an eternity

I guess it all started Tuesday night... My tongue was feeling a little sore, but I figured a good night's sleep seems to cure a lot of things and I'd feel better in the morning... Oh how wrong I was.

Wednesday morning I woke up and felt like my tongue had doubled in size overnight.  Upon closer inspection I found a 'lump', almost pimple like on the right, underside of my tongue.  It was very sore and I wasn't feeling great in general so I took my temperature - 37.2 - on the high side, but I've been told that a temperature of 38 is when I have to go to the hospital.  I took a T3 and rested for a little while and started to feel better.  Since it was a nice day, Aunt Noonie and I sat outside on the deck to wait for Becky to arrive.

When the T3 started to wear off I started to feel again just how big my tongue was and it was affecting the way I was talking (understatement).  My sister Becky really enjoyed teasing me about my new lisp... Gotta love sisters!

By Wednesday evening the pain was getting worse and starting to move to my throat.  Between the throat pain and the size of my tongue, swallowing was very difficult.  This is not good news for a girl who likes to eat.

Thursday
2:00 am.  I am awakened by extreme pain in my mouth.  At this point I couldn't speak at all.  I  still didn't have a fever, so I didn't want to go to the hospital, so I woke Kendall up to try calling the cancer clinic, but the triage was closed.  I had an appointment for blood tests at noon anyway, so I figured if I could get back to sleep then I would just have them look at it in the cancer clinic on Thursday afternoon.  I took a couple T3s and was able to get back to sleep... for a little while anyway.

4:30 am.  I'm awake again and in unbelievable pain.  I can't speak.  Every time I try to swallow the pain gets worse and shoots into my throat and ear.  Still no fever, but with all the Tylenol I've taken, I could just be masking a fever.  The pain is so bad I can't wait until my clinic appointment at noon.  I woke Kendall up to go to the hospital.

4:50 am.  We get to the ER and everything seems promising at first.  The triage nurse takes all my information about my symptoms and they get me into a bed right away.  We ask them to call the on call Haematology Oncologist (as we were told to do if I ever had to go to the ER) and they say that I have to see the ER doctor before they'll call the Oncologist.  There's no one in the waiting room, so this shouldn't take too long, right?  WRONG.

6:30 am. Still waiting to see a doctor and now I'm getting chills.  They take my temp again.  It's gone up, but still hasn't hit the magic number of 38 so they're not concerned.

7:00 am. The doctor's here!  Well, sort of.  I get a resident who has no clue what she's looking at.  She asks me a bunch of questions.  Feels my lymph nodes.  Looks in my ears and mouth.  Then she says she'll have to talk to the 'staff doctor' and leaves the room.  On her way out we also ask her to page the on call Haematology Oncologist.

8:00 am.  Kendall left the room to call work.  The 'staff doctor' comes in.  He looks in my mouth and ears and feels my throat.  I showed him the 'lump' on my tongue.  He says its a canker sore and will go away on it's own in about 7 days.  He says can't do anything for me and I should see my family doctor or my oncologist.

8:15 am.  Kendall is back and the nurse comes in to draw blood.  Kendall asks why the doctor says he won't do anything for us so the nurse says he'll send the doctor back in.

8:30 am.  The doctor comes back in.  Kendall asks him why he's not doing anything for us and he says that he won't prescribe painkillers that I'll have to see my family doctor or my Oncologist.  We tell him that I don't see my Oncologist for another week and ask him (again) to page the on call Haematologist.  He says that he can't and that they won't come down anyway.  We tell him that we were given instructions by my nurse practitioner that if I ever had to come to the ER to make sure they page the on call Haematologist and the ER doctor still won't do it.  At this point I tell the doctor if he won't do it then we'll go upstairs and find someone ourselves.  He said 'Fine' and walked out of the room.

9:45 am.  After going up the the 7th floor (my old home) to look for my nurse practitioner, we ended up down in the cancer clinic to see Nurse Caryl.  Caryl runs the show where I get my blood work and transfusions done.  I knew she would help me.  She looked at me and said there's no way I should have been treated that way in the ER and that they have no idea what to do with cancer patients.  Caryl had me lay down in one of the beds there and rest while she tracked down my nurse practitioner and one of my doctors. 

11:00 am.  I've had some much needed sleep and my nurse practitioner and doctor come in to see me.  They say is looks like I may be getting thrush, which is a side effect of the chemo.  They prescribe some anti fungal meds and painkillers and tell me how I can reach the on call doctor myself next time instead of going through that shit show in the emergency room again.

12:00 pm.  Finally, we got my medications and are on our way home.  I am a lucky girl to have such a wonderful and supportive boyfriend to go through all of this with me on 4 hours of sleep (and sit with me awake while I get to sleep waiting to see doctors).

It's situations like this that really illustrate how amazing all of the doctors and nurses that work in Oncology are.  After an experience like I had in the ER, it amazes me that they allow some people to practise medicine.  Anyway, my mouth still hurts and it's very difficult to talk.  I can't really eat much, but it's feeling better than yesterday and will hopefully continue to get better not worse.

Catching Up (March 19-28)

Ok, I know it's been a while so let me bring you all up to speed.

Last week, after my blood transfusion on Monday, I felt great and spent the next couple of days enjoying the beautiful, unseasonably warm weather.

Thursday last week, I went back into the hospital for more blood tests and needed a platelet transfusion.  While at the clinic, I met Boyd.  Boyd and I have several mutual acquaintances through working for the same company and were in the hospital at the same time in February.  Boyd had heard about me and that I was in there but because of privacy laws, they couldn't tell him anything about me.  Turns out, our rooms were only about 100 feet apart.  Anyway, I now have a new friend who's been going through the same things as me at the same times as me and I'm wishing him a speedy recovery and a long and healthy life.

After receiving platelets on Thursday, you'd think my platelet count would have increased enough to keep me safe (for those who may not know, platelets are the cells that make your blood clot).  However, Friday evening, I was making dinner and my third stroke with the potato peeler went through the tip of my finger.  It bled... and bled, and bled, and bled.  A tiny cut, that should have bled for maybe a minute wouldn't stop bleeding.  Needless to say, Kendall got the honour of peeling the rest of the potatoes (and anything else in the kitchen that requires sharp utensils from now on).  Then the next day, I was folding laundry and managed to split the cut on my finger open and it started gushing blood again.  I guess Kendall gets to do the laundry too!

On Monday my long awaited house guest arrived... Aunt Noonie has come to stay with me for the week!  This is very exciting as she lives overseas and I only get to see her 2 or 3 times a year and usually only for short visits (a day or so).  Now I get her all to myself for a whole week - with the exception of Wednesday, when my sisters came for a visit... Which of course was so much fun - anyone who knows us knows the kind of trouble the four of us ladies can get into!

So, that's what I've been up to... Enjoying life and spending time with friends and family.  What could be better?  Well, remember to appreciate the good times... Stay tuned for what happened after Wednesday.....

So confused

Why am I awake? It's not even 8 am! Who's blood did they give me????

Oh how tough life can be when it's 20 degrees and you're stuck at home...

In the hospital today for blood tests. As it turns out it's time for an oil change. Getting a blood transfusion today so when this is done I'll be a whole new woman and able to enjoy all this beautiful weather we've been having. Yes, life is pretty rough - I'll have to spend the afternoon in the backyard with my puppy in the sunshine.

I got called back to the hospital on Thursday afternoon for round 2 to begin.  I'm 1/3 of the way through my second round of chemo now.  Luckily, I do not have to stay in the hospital the whole time, only over night the days that I'm getting the chemo.  This time around I am receiving the same drug as one of the ones I got last time, however it is much stronger, but in shorter bursts.  I was feeling a little sick last night, but have managed to keep eating and keep everything down.  Thank goodness for anti nausea meds :)

This round will be over on Tuesday morning and hopefully I'll have some more information on what comes next by then.

My hair grew back!

Round 1 goes to...

I had my follow up appointment yesterday and got the news I had been hoping for... I am in remission! 

I will still have at least 2 more rounds of chemo, the next starting as soon as there's a bed avaialable for me in the hospital.  So again, I am enjoying the time I have left at home feeling great and resting up before round 2.

Brandy-1, Cancer-0

Monday morning, after my weekend pass, I returned to the hospital as instructed.  A couple hours after arriving, they had the results of my bloodwork and were very happy with what they saw.  My doctors decided that my counts had come up enough that it was time to do another bone marrow aspiration to check my progress.  Kendall was with me this time to hold my hand while they dug needles into my bones.  I think I hurt his hand but he'll never admit it.

After the bone marrow aspiration I got the all clear to go home.  I won't have any results until my follow up appointment next week, but my counts are up enough that I am allowed back into the world!  So here I sit at home waiting for round 2 to start.

Happy Birthday to Me!

Friday morning I got great news from my doctor.  My counts were looking great.  Up from earlier in the week and ahead of schedule.  The average person's counts are up at day 28... Sounds like a challenge to me... Mine were up at day 22!

With my counts looking good and not having any fever for a few days, they decided to give me the best birthday present I could have asked for.  I got to go home for the weekend!

After waiting what seemed like forever for them to get my medications together for me to take home, I was able to leave the hospital around 3:00 Saturday afternoon.  As I walked through my house, things looked different.  Everything was bigger, more open and brighter than I remembered.  It's amazing what spending 3 weeks in a 10x10 room will do to your preception of the outside world.  I sat down on the living room floor and waitied for Kendall to get Sydney out of her crate and take her outside for a pee.  As soon as she got to the side door she knew something was different.  She was excited and sniffing around - She hadn't forgotten about her mommy!  After a quick trip outside with Kendall, Sydney came running into the living room to see me.  She ran right into my arms, gave me all kinds of kisses and curled up in my lap to cuddle like no time had passed.  I don't remember when I've been that happy.

A little while later I went upstairs to grab a sweatshirt and experienced my only minor setback of the weekend - a little slip down the stairs.  Good thing they sent me home with painkillers.  The rest of the weekend I was a little more careful and let people take care of me.  I guess hanging out in a hospital bed for 3 weeks takes a toll on one's leg muscles.  Lesson learned.

The rest of my evening was spent eating grown up food (I've been eating a lot of Kraft Dinner and Chef Boyardee in the hospital) and cuddling on the couch with my man and my puppy watching movies on my 42" TV (a big upgrade from laying in a hospital bed watching my 9" TV).

On my birthday, I woke up in my own bed next to the man I love and had a lazy morning cuddling with my puppy.  I had GOOD coffee and my mom, grandpa and sisters came over to make me pancakes (with birthday candles) and bacon for breakfast.  I spent the whole day relaxing at home with family which may not sound all that exciting, but was the best birthday ever!

I'm back at the hospital now.  My vitals are all good and I'm sure I'll find out later today about my blood counts.  Hopefully I'll only be in here a few more days before this first chapter of my fight is behind me and I can go home and rest up for the next round.

My advice to all of you healthy people out there... Don't take the little things for granted.  You may not see how wonderful some of the most minute details in your daily life are until you can't enjoy them every day.  Savour each sip of good coffee with the sun streaming in your window.  Drink in every second of cuddles with loved ones (furry or otherwise).  You don't know how much you'll miss it when it's taken away from you.

Bald

Thursday morning...

Hair today... Gone tomorrow

Sunday Morning

Sunday Evening

Tuesday Morning

It's been a pretty quiet week, which is nice.  Not much excitement and lots of time to read.

The good news - My blood counts seem to be coming back up and my doctor said this morning "May be recovering next week"

The bad news - The unfortunate side effects of chemo are showing up.  My mouth has been really sore.  It hurts to eat and brushing my teeth is excruciating. As of this morning, my hair has started to fall out.  This is something that I thought I was prepared for... As it turns out, I don't think you can really prepare for pulling out handfuls of hair.

Happy Valentines Day

Well... I started my morning by getting a gift straight from the heart.  A blood transfusion!  Or, in the spirit of grey goose martinis and bellinis... a bloody mary?

My wonderful boyfriend showed me tonight that you can, in fact, celebrate Valentines Day anywhere.  I was surprised with a steak dinner from The Keg and chocolate covered strawberries.

Still feeling good overall... And I've had lots of valentines (and a cake - thanks Mommy) to keep me smiling!

Bellinis & Lube... ?

Wow!  What a busy weekend.  I'm still feeling good though, so it was nice to see everyone now.  I hear this coming week will be the worst, so I'll want to limit the visits.

It's incredibly dry in here which I have learned is because bacteria grows in moist environments, so they keep it as dry as possible.  This has not been good for my skin, lips or nose.  I can moisturize my skin and I go through Blistex like crazy, but there's not much you can do for the nose... So, for the last few days, I've been digging for burried treasure on a regular basis.  Yesterday, the dryness started causing nosebleeds.  My nurse offered me some 'Mucol' to help... Just something to help keep my nose less dry.

With my platelets being so low, and the nosebleeds continuing, they decided it was time for a transfusion.  So, I got hooked back up to Winston... No martinis this time, I guess it was a bellini... ?

Good News...

...I got a PICC Line yesterday!

I never thought I'd be so excited about a medical procedure.

A PICC Line (peripherally inserted central catheter) is basically my new bionic vein.  It's a latex tube inserted into a vein in my arm that goes up my arm and into my chest.  This is now a part of me for the next few months.  It's a little creepy, but it means that they don't have to stab me for blood every morning which makes me very happy.  For the most part, any drugs they give me or blood they take will all go through this and I don't have to deal with needles... This is very good news for a wimp like me!

Date Night!

Microwave popcorn... Good TV... And a cute guy!  What could be better?

Feeling tired today... Could be all of the excitement of the last few days, could be the chemo starting to knock me down, but I got lots of rest and enjoyed every minute of it.  I am still overwhelmed by all of the love and support I have received from everyone.  It makes it so much easier to take all of this knowing that I have so many people standing behind me.

Man, this hangover is going to suck...

 My Martini

 My Butler "Winston"

He serves my martinis to me.  

It was also the name of Lara Croft's butler and that chick could kick some ass.

Shaken, not stirred

Another Fun Day in My Penthouse Suite

Well... Another day has come and gone and I still feel good.  Lots more visitors, but I still haven't had the time to catch up on my Grey's Anatomy (as if I haven't seen enough of the inside of a hospital).

A test this morning confirmed I have a heart, and it does in fact beat.  It may have also given me super powers (I hope they're cancer fighting super powers) as it involved taking my blood, making it radioactive, then injecting the blood back into me.

Time to try to get some shut eye now... I may need to rest up to fight the good fight.

"The future is no place to place your better days" ~Dave Matthews

Waiting for the Other Shoe to Drop

Another day over and I still don't feel like a sick person.  While that's a good thing and helping me keep my spirits up, I know it's not going to last and that at any moment I could feel like I'm figting for my life.  But so far so good!

Tonight I took the bandage off the spot where they did the bone marrow aspiration (and by I, I mean I made my mommy do it).  It was feeling a little irritated and thought it would help to uncover it.  This is what it looked like under the bandage.  Ouch.

Anyway, another exciting day is over.  Still feeling good and having as much fun as I can.  Lots of visitors and now it's time for me to rest.  Goodnight.

Last night was difficult.  I woke up around 3am in a cold sweat scared that this was when it starts to kick my ass.  So far I've been having as much fun as I can in here, but that was a dose of reality.  Any moment now these drugs could take over and start attacking my body and I have no idea when it's going to be.

I am so thankful for my wonderful nursing staff who reassure me on a regular basis that what I'm going through is normal and can explain what I may experience and when.  My nurse told me that cold sweats are actually a symptom of the cancer, and one of the first noticable symptoms (which is often what brings people to the doctor in the first place).  I guess the good news is that I'm already here and not just starting the diagnosis process.  As reassuring as this is, reality is still starting to hit me pretty hard and I know that this is just the beginning. 

Thank you for being here to hold my hand last night Chelsea.  I love you!

Girls night in the 'Spa-spital'

Thank you Becky and Chelsea for my girls night!  Wedding shows, gelato and mani/pedis!  I couldn't have asked for a better night!  I love you both so much and wish we could have nights like this more often (but maybe not here). 

Chelsea had some very pressing medical questions for one of my nurses.  Can she paint my finger and toenails.  They said they need to have one finger available when they're checking my vitals, but to be on the safe side just to paint every other nail in case for some reason they need to use a different finger (or toe).  So, without further delay... The cancer mani/pedi:

Think it'll catch on?