Finally...

So my counts have risen a little bit FINALLY! Today I went to see Dr. Wong and my WBC were up to 2.4 and my neuts went up to .7...thank God as both kids are sick and I have a sore throat....yikes!! I got the ok to go to the lake for a day or two this weekend so I'm excited about that...Scott and I are of course delving into a new home project...literally! We are hoping to build in the new community right beside ours called Quarry Park...we will be building our dream home, yay for us!! Things will be crazy so I gotta get my numbers up waaayyy more! Ha! I need to relax a bit more at home I think as I've been swelling up today and yesterday. Damn, just when I thought I could get back to normal...whatever that is!!

oxxo Vic

It's good 2 b home!

Hello all...sorry it's been so long since an update but the two kids are busy!! :) JJ's dayhome has holidays so when Scott's at work, Gramma Carla comes over, thank God as I can't even handle one now, let alone two! I went for my appt yesterday. My WBC were up to 2.2, neuts were up to 0.4, platelets and blood hadn't dropped super lots but I got them both....I was there for my 11.30 appt and left at 6! My God!!!!!! Anyway, I'm just so happy my WBC and neuts especially have gone up a bit. They weren't forever!! JJ has had a cold since Saturday, the day after I got home of course....egad!! I haven't seemed to have caught it yet thank goodness. Maybe it's because I'm still on so many drugs?! I will see Dr. Wong twice a week for quite some time he said...I had a huge nap today and got blood yesterday so I feel great tonight...Scott is out at Predator Bay hoping to get a ski in. I'm so glad to be here in the evenings etc. for him so he can just take Jett or do things he wants to do! I hope to be feeling back to my old self by Sept or beginning of Oct. at the latest so we can get back to some normalcy around here. I feel like I've missed sooo much because I had all these plans for the summer and now I'm a prisoner at home after the crappy hospital! Grrr...well, I know I need to be patient but it's now been 6 weeks (tomorrow) since I went into hospital. I expected, of course, to be perfectly better by now! I found out it takes months and months and months for recovery. I do have some wonderful contacts in my AA world though; Kristin in Swift and Penny and Shawn! Penny has been great, telling me everything her hubby went through a couple of years ago when he was diagnosed and I'm grateful for that! Thanks Penny!

Well all, take care and all the best...pray for working bone marrow people!!! xo Vic AND family!

Home now!

Hello all!

Well they sent me home without an immune system but I'm happy now...I was SUPER nervous about it as I do not want to go back with an infection but the hospital is a bug infested place so I'm probably better off here. I can't have a lot of visitors, obviously. I can't go anywhere with lots of people and ALWAYS wear a mask when I leave, BUT I'm happy to be home and so are the kids!

My counts are all still low, just like they were at the hospital and I go to see my doctor at the clinic twice a week...I take tons of meds at home, which I didn't think I'd be doing but I guess you gotta do it...Gramma Sherry and Grampa Hart are here so Scott is going out tonight for dinner and to see Social Distortion (a band we love) so I'm happy he gets a night out!

Please don't call lots etc. as I may be home but I still will be napping lots etc. I hope to see my numbers start going up in the next few weeks so keep your fingers crossed for me!

xo Vic

hello

No internet at the hospital, sorry people. At home today with a pass and they may be sending me home soon even though I am still neutropenic and have no immunity. I"m nervous to say the least. I thought I"d be healthier when I went home...anyway, I'll be in touch!! ox

numbers are the same...

I'm doing fine but I found out this afternoon my friend down the hall Maggie, not sure if I mentioned her previously, passed away. I have never met a more positive woman, other than my mom. She had lymphoma and was very sick and was in a coma for the past few days. She passed when her hubbie went to get a coffee...I remember my mom did the same thing when Les, Jeff and I went for lunch, that's when she passed. The nurses here are quite upset as she was such a great woman. She came in a few days before I did and when I used to go on my walks around the unit we'd chat passing in the hall or in her room. She was an amazing woman and I feel for her family; she had a 12 & 14 yr old. Anyway, that's my day today except that I had a great visit with Danette who was my mom's best friend back in high school...she is visiting from Nova Scotia and made a stop to see me. Great to see her!! Take care all....oxxo Vic

Get out of jail free card today!

I got back not to long ago from a great day at home with the fam. Scott and the kids picked me up at the hospital on the way back from the lake this morning and they dropped me off tonight about an hour ago. Great day and I felt even better than last weekend's visit. Still hard to leave for all involved but so nice to eat real food (Boosey, that chicken dish you made was SOOO good, I need the recipe!) have a real shower and hang out with the fam on the deck etc. Obviously because I have no white blood cells we can't go anywhere but at this point, I don't want to anyway. You all probably have no idea how nerve wracking it is for me to go home even...what if I catch something, what if I spike a temp there, etc. etc. It's never ending mind games...damn blood! I also didn't believe all the nurses and doctors who told me, everyday including today, how long it takes for counts to come up. I always thought, "yah, but not me though" like I'm some sort of Superhero or something?! I mean, I kinda am, but my blood maybe isn't?! Anyway, I really thought they would be up there so high, I would not catch any infections (had the blood bug and now sinus infect) and would beat all odds and be at home gloating because I am the poster child of what AA could look like. Sadly, it IS a very long process and I will likely be here for at least 6 weeks...sadly, this Wednesday is 5 already! Can you believe it?!

Enough of all that, here is what you are all waiting for, my counts. Although, you all must be getting as bored of the same-same as I am! Ha!

HMGB: 11.8

pltlts: 45

wbc:1.5

neutrophils: 0.2

It's the stupid neuts that are killing me...they are the part of the white blood cells that are a person's immune system so I really don't have one.

Alas, I am not being negative with this post people so please don't send me, "stay positive" emails, please!! I am very positive, just super bored!!!!!!

Love, moi

Well, not much to say...

Jorja and her cabin "boyfriend" Grady at the lake tonight! So cute!

...but if I don't, I may get emails! :) My wbc are at 1.8 today but my neutrophils are still dangerously low; 0.2. I had to get platelets today because my body just eats them up! I can't believe it but all the doctors and nurses say that platelets are always the last to come up with AA patients. Had some nice visits the last few days but it's quite tiring! I never really realized, especially when JJ is here, how tiring it is...I love seeing JJ but I always act a little bit better in front of her! Ha!

They are off to the cabin for the weekend. I guess she's driving up with Gramma and Tom in their minivan so she's super pumped to watch movies with the wireless headset. I'll just be happy when I get the call they've all arrived safely! :)

same-same

Hey all. Not much new; levels still low but my sinus infection is better. It still swells my face every so often but I can breathe, smell and taste off and on! Ha! So many visitors lately....auntie Hedy and Uncle Barry dropped by yesterday with some homemade goodies. Les came from Saskie yesterday for a few visits, got a room and then we had lunch today before he left. So good to see him and I know he felt better once he saw me and that I'm feeling pretty good considering. I explained everything to him to see he has a bit better idea of what's happening to me etc. Poor guy was pretty worried about me....:) Scott, Jorja, Les and I had dinner last night at the cafeteria so that was awesome. I think that JJ and Scott are coming tonight too!! They are off to the cabin this weekend with a little push from me...they all need some fun and Gramma will be more than happy to watch Rowen so that Scott and JJ can go tubing! :)

Nothing new...

...counts are still the same and low. Had a few visitors today and some platelets so I was out of it cause of the Benadryll...hopefully tomorrow I see Rowen and Scott and my Uncle Barry and Auntie Hedy from Saskie!! Adding a cute picture of JJ getting her hair done when she was a flowergirl...at the salon and everything!! Too cute!

Get out of jail free card today!

Well, I got to go home for just over 5 hours today...it was great but very tiring emotionally and physically. My poor girl had a hard time dropping me off. It rips my GD heart out to see a little girl cry so hard without having a tantrum or anything...I'll let you know tomorrow if it was worth it but I think it was! I'm now hooked up to the IV for like a million years as they've added a new antibiotic as they are finally taking my sinus infection seriously. My whole side of my face is swollen and now have a swollen gland. God, I've been complaining about this since Tuesday! Lucky me, I get a head CT scan tomorrow. Better not make me feel like I've peed again...:)

Then I get a couple of bags of blood...not sure if I'll even sleep! :)

My wbc are up to 1.6 today so that's good I guess. I was so freaked out to go home and catch something....I'll keep you posted! xo

I hate the wait...imagine?!

A "mini" Wearmouth reunion!! Jorja, cousins Kai, Bonnie and Josie at Uncle Greg and Josie's bbq; aren't they super cute!!

Nothing new today, no blood, platelets or anything...I was sad that my wbc went from 1.3 yesterday to 1.1 today. It's SUCH a mind game I play with myself but I can't get out of my head that they are what hinders me on getting out...argh....Scott and the kids were here and it was great!! Jorja had a big cry outside when they were in the parking lot so I went and gave her big hugs. My poor girl is just so confused and sad....stupid blood! :)

I also wanted to remind people, no flowers. Hematology patients can't have flowers because of the spores etc that come in. I feel terrible still my buddy Mard spent all this money on the most beautiful lilly's (the same ones actually I had at my wedding) and.....the nurses got them! I also want to remind everyone how serious it is to literally stay across the bed from me, no hugging, disinfect outside my door and being careful what you touch etc. I know it sounds nazi-ish but NOTHING can hinder my health so I can go home! Thanks everyone!! Looking forward to spagetti for dinner....:)

not much new today!

Still waiting....today I got platelets and I'm betting I'll get red blood cells tomorrow...my wbc came up to 1.3 today so that's good I guess?! Mardy was here, a friend of mine from my MRC journalism days. She brought some deliciousness with her all the way from Golden! Great to visit with her and seriously, best chicken salad sammy ever....the muffins are currently about to get eaten! A nice visit with Shauna who niceley brought me two apples tonight just cause I had a hankering!! Thanks for being so sweet everyone, I feel blessed everyday...and a shout out to my little buddy Al who gave blood today and made it a competition and then kicked everyone's ass...ha!! Al, you rule! :)

Good day again!

Hello all, just waiting for numbers to come up, go down, whatever else. Had a great day, except for having to be on IV antibiotics, anti fungals and weird face numbing and foot itching side affects from one of the drugs, I feel great today! Super bored but had a great visit with Victoria and Laura surprised me too! Vic brought homemade stir fry and Wanda came by last night and so lovely, she brought homemade cabbage rolls! The nurses were sooooo jealous! A shout out to Kris for her excellent Shepard's pie that Scott brought me by yesterday too! Les called me last night and there is no two ways about it, he's coming to see me next week. God bless Lester, he really is excellent. :)

Anyway, Dr . Wong came by this afternoon to see me....he said things are looking good and the platelets and hmg/red blood cells are dropping slowly...maybe tomorrow I'll need platelets or blood, maybe Saturday. He's not working this weekend but if I don't get any more infections and I am here to get any IV stuff I need, I may get an afternoon pass to go home to the family....and no, obviously we won't be accepting visitors! Ha! He still thinks things are great, so that makes me happy. My friend Laura was here at the time and she smiled and said, "wow, that was awesome!" Yep, Dr. Wonger rules...:) I'll be in touch, just sitting around getting fat and trying to make blood people....Jorja and Scott are supposed to coming tonight so I blow dried my hair today and am happy both nose plugs are out and not bleeding! Love, Vic

Numbers games

Well Dr. Wong came to see me today, as I am his favorite patient, I wasn't surprised....:) Some days "my little brother" the resident comes in cause usually there's nothing wrong with me! Anyway, he looked at my 3 blood numbers and said he was super impressed with my numbers! Especially, my white blood cells!!!!! I laughed when he said that because they are at 1.0 and min is 4-10 I think. He quickly pointed out that they have double since yesterday and everyday since treatment on Sunday! He also pointed out that most AA patients receive blood and platelets usually every other day. I got platelets on Monday and they today are still up at 37. Not high but I don't need platelets, maybe not even tomorrow. My hmg is 11.7 and I haven't had blood since Saturday! Anyway, he said that pregnancy induced AA, which he still thinks is what happened to me, has even better and faster results than regular AA patients. Whatever, he was SUPER IMPRESSED! Oh, and I saw Rowen my little man...get to see JJ tomorrow and she is having a better day today. We'll see at bedtime! Good day people, keep those vibes coming, Dr. Wong said whatever I'm doing to keep doing it! ox

How to mend a little girl's broken heart...

...my lovely little lady has finally hit her wall. She and daddy called last night cause she was too upset to sleep. I feel physically ill thinking of her crying about me but was so happy she felt better after we had story on the speaker phone and we both cried a little. This morning we Skyped, well, she played Polly Pocket's in front of the camera, and she is doing much better! I love when she plays in front of the camera, I always insert questions etc, she makes me laugh!

I hate this place, this disease, this treatment and I'll be damned if I ever have to put me and my family through this again. There, the rant is done. :)

Raging...

Our friend Shauna from Seattle brought the fam dinner tonight with her babe Lucas.

Lucas 7 months and Rowen 6 months; too cute!

Rowen: "Dude, it's totally ok you are holding my hand." Lucas: "dude, I totally know."

Ok boys, get it together!

I'm so freaking mad right now. Just went for a walk, outside finally no less, and people were all over the hospital doors smoking....seriously!!!!! You are not supposed to even smoke on the grounds and they are standing outside the freaking doors. A-holes, seriously.

Anyway, that's all...and if anyone has homemade good cookin' I'd love some! If you have spagetti one night, pack up a little individual rubbermaid container for me. The food SUCKS and I need some homemade anything!!!!!!!!!! So, left overs of real food: WELCOME!!!!!! oxox

Better day today...

I love this picture of her at the Wall's cabin...not just cause she looks like me either...:)

What a beautiful flower girl!

I added this picture of Brielle and Jorja because it could be Ang and I!!! Too cute!

Daddy has such a great eye...nice shot honey!

Daddy, daughter moments! :)

So I had a terrible day yesterday. Fever, chills, aches etc. etc. Dr. Wong says it was the ATG. I hate it!! Had a crappy nurse so had a hell day...was so sad I couldn't hang out with Shauna and Yokes...sorry ladies but I feel much better today! I actually slept last night so that helps I'm sure...my WBC are still at zero, got platelets yesterday so they are up to 45 and my red/hmg are at 12.7! Dr. Wong was surprised and happy with that...:)

It freaks me out that I literally am not producing white blood cells. How weird really?! But, that's what all these harsh drugs do right? So glad to be off the prednisone. After my fever and night sweats and being off the steroids, I have deflated 5 pounds today! Also, one of my nose plugs came out so I only look like the guy from the Mask from the right side! :) I'll be in touch...xo

I'm attaching some pix of my gorgeous family....Scott took Rowen for his shots today and they did very well. I told him not to take any of those nurses crap and laughed when he called. All's he had to say was that mom was in the hospital and they left him alone about not nursing or getting all his shots....except that they wanted to do crisis family counselling and stuff.....ha!!!! Only Scott could handle it...I laugh picturing him saying, "No, we're doing fine thanks. No, we don't need an intervention....". ha!

Here we go...

So, I didn't sleep a wink last night. Too much on my mind but too many drugs too I think. This morning I've been taken off everything but my high blood pressure meds (not even sure why I'm still on them) and Losec is for my GI tract so I don't get a tummy acid bug thing! No more prednizone! Stupid steroids....the other thing I need to take even when I get home is the skunky gross cyclosporene. Anyway, so glad to be off the drugs...take care and I'll keep you posted on my blood counts. Everything is practically at zero today so we'll see, I think I'll probably need platelets so let's hope I don't react like I did on Friday, yuck!!

Love, Vic

I'm done, I did it, I'm DONE!

So, I'm unhooked and no more ATG! I did it, I did it, I did it.....:)

It was another emotional day, I guess my subconscious is now saying, "so, you are done, now what?". Now is when we wait for my system to recharge which is terrifying of course! Today I was thinking about my brother and mom a lot. I kept thinking how guilty Jeff might feel if he is not a match, which of course chances are VERY high that he is not. Then I was feeling guilty if was! Ha!

I'm using this as a place to blog to you all but also as my journal. I slept a lot during my session today and had very vivid dreams. My mom when she first died used to come to me a lot in my dreams, then less and less and the last time she came was when I was prego with Jorja to tell me I was going to have a girl and on May 9th (creepily right!). I've always wondered why through all this she never came but today she did; she came in my dream when I got a nosebleed gusher to help me stop it. We were in a hospital for me, as soon as my nose started bleeding I called her and she came to help. Then we watched some nurse doing something funny with a patient in the next window?! I don't even know if my nose stopped because I woke up and then sat straight up about 10 minutes later and realized, "hey, mom came!!!!!!". I"m one happy girl and is absolutely bursting with this faith that needs to be channelled! Poor Scott when I get home! Ha! Love and yay, the grossness is done!! Vic

Treatment 4 just finishing up

Well, treatment 4 has about 20 minutes left and so far so good. My heart seems well but we'll see later so hopefully tomorrow I won't blood so we can start earlier tomorrow. It would be nice to be done earlier than 9 at night but whatev, it's the last one EVER!!!

The only thing different was this time about half way through I became extremely emotional about Rowen and texted Scott while the wedding dinner was on to call his sister Patti who is having a sleep over with Rowen at the lake, to make sure all was well. Of course it was but I felt physically fine, just mentally strapped down so to speak....strange hey?! So, he was in bed for the night, Scott told me to basically smarten up and I went back to my " internal special treatment place"! :) Hopefully I'll be writing the same sort of blog tomorrow and then just gear up to deal with have no immunity and all the crap that comes with that....considering I've dealt with all of it almost already, I'm in a good headspace for it! Love, Vic

treatment today

My beautiful big girl got the special treatment today as flowergirl!! More pix in dress to come!

I love you Jorjie girl!!

just gearing up for treatment by getting two bags of blood cause my hmg is done to 7.7 today...remember on the 30th when it was 12.8?! Ha! Anyway, my body is so not happy with me; I got a blood bug which we're getting out with antibiotics etc. but when I went to get my platelets last night I had a huge reaction to Benadryll...wth?! No one has hives from Benadryll, it fixes hives for God's sake?! ANyway , dr. wong says he really thinks it was the other crap and a one off thing so we are going to try it out today as part of my regular premeds before ATG. Let's hope things go internally well enough to do the last one tomorrow so I can physically and mentally move on....on one happy note my cousin Jana made me homemade Gramma O buns so I stuff them in when feeling sad...ha!!!!!! AND my lovely auntie Kim, kel, ame, marc, larissa and lovely Nathan sent THE FREAKING BEST chocolate package!!!!! Anyone who knows me knows how much I love the Bear Claws in Banff at the Choc. shop and there was four in there! Thanks sooo much guys! I had to actually give the nurses a bunch too because of treatments, they will be all I see for a few days and now I'll be gettin' the best service! Ha!

Jorja is just about to go on this second for her flowergirl debut. As I weep...alas....Gramma Carla and auntie Collette took her to get her hair done and of course daddy sent me some...enjoy, isn't she cute! Will add more of her in her dress later!

Peace out and wish me luck today! Love Vic

no treatment today, but tomorrow now...

....which I'm actually ok with. My Dr. Wong was in today and because I spiked a major fever yesterday and have some sort of bug in my blood, he wants to do another whole day of antibiotics today. I told him I was fine with that if he was. The other Dr. said he was ok either way but I really like Dr. Wong and he promised me tomorrow and it's for the best...which I know it is and I had 4 girlfriends in the room when he was here and they all agreed he was right, they just want to make sure that anything that happens tomorrow is because of the drug again, not some bug I have still...fine, fine...:) I was so happy that Deb, Jo, Karen and Shauna were here to meet Dr. Wong. He chatted for quite a while and then said in front of us all how, "pleasantly surprised and happy" he was with how my blood numbers were doing! We all agreed he would not have said that if he didn't mean it and Dr. Daly mentioned something the other day too that he liked those signs too...yay! Anyway, the 2 treatments will kick everything back down b/c that is what it's supposed to do. The fever put me back another day but to be done potentially by Monday, is soooo awesome. Hearing my hematologist say he was pleasantly impressed with reaction so far is bigger than anything so far....yay!! I'm getting platelets tonight so I will be out of it b/c of the Benadryll so Ill try to keep you all updated! Love, Me

The last supper; so to speak

well, we seem to be on for tomorrow. Had quite a day today, spiked a fever and chills this am so was sent for a CT scan, which was hot dye running through me. They said it will feel like I peed my pants but not to worry, I won't. Well, I was pretty sure I did pee but they were right! Anyway, so then I got to get bags of new antibiotics, magnesium and am currently trying to psyche myself to swallow this fizzy phosphate drink. I guess I was super low on magnesium and phosphates so why not put me on the drip for 4 hours?! Ha! Deb and Jo were here all day so I was so thankful. It was GREAT to see them and they dropped off so many care packs from people! Really people!! :) Jo gave me a foot rub and Deb was super interested in all my nurse crap...she even told me to tell them to speed up the drip as it would take even longer. Yah Downtown!! :)

I still think that it was a sinus infection because my nose and sinus are so swollen and deformed from all the packing....but every darn test that could be done, was. I know, should be grateful but hospitals are driving me nuts! I hate not being in control...imagine?!

Anyway, start your prayers, vibes, good heart and liver vibes as we are on track to have the 4th treatment tomorrow and if everything goes ok, Saturday too...then done!!!!!!! Don't get freaked out if I'm not updating all the time. If I feel like crap, this is the last thing I want to be doing but when I feel better, I will update first thing! Peace out people!!!!! Vic

Two great days in a row...

My beautiful baby boy today...he really does have hair!! xo Love you RW!!

Hello all,

I've had two great days, no treatments or anything and I slept last night. It's been since I got my nose packed on Friday that I haven't slept...I saw both kids and Scott the past two days, showered, and eaten more than I have since I came in. The dietician came up to see me today and gave me the "secret" menu. About FREAKING TIME! Can you believe they just don't offer long term patients that automatically?! My God, anyway, I can now get spinach salads, Mckay's freaking ice cream, chef salad, real roast beef, omelets....my God, the list is way better! As a treat I'm getting chicken fingers tomorrow...ha!

Dr. Daly today said that he was very impressed with my liver enzymes, they are doing EXCELLENT he said and feels Friday is go day if things keep going well! So, I'm just trying to rest, shower, eat and visit with everyone before things happen then. He told me straight up that my levels will tank again but I told him I was mentally prepared for that to happen again. I just hope my heart and liver will take the two last treatments. I can deal with everything else after...today my numbers are lower than yesterday already but they actually are still pretty good...The Gallaughers and Benny stopped by today, the kids were here around lunch and of course good ol' Karen was here before she flew off...she works for WestJet. She is generously staying at our house this weekend to take care of Jett while Scott and the kids are away. She had a flood in her condo so I think it works out for all of us! :)

I'll be in touch! Love and prayers, Vic