Farewell Calgary!

The chaos of the past couple of weeks has been absolutely overwhelming. So many people stepped up and helped me out with ridding my apartment of things I no longer needed,or taking me out for much needed breaks to see the opening of the Lions Festival of Lights, followed by Zoolights the next weekend, and a Chanukka potluck celebration as the final hurrah!

The friends we made will forever live in our hearts, leaving was very difficult and I feel like there were so many plans that had been put on hold until Rori was 'old enough' to participate. Hopefully we will make it out again for a visit and to make it back out to the Enchanted Forest or white water rafting (she's old enough next summer!) and hiking in real mountains instead of walking up the big hills here will be a must!

My crazy baby brother drove straight from Ontario to Calgary to pick me up. Thankfully he had to stay two nights to both recoup and to help me out with deliveries and picking up the uhaul (nightmare = faulty wiring then leaky trailer, but we made it!). The extra help last minute from building friends was also very much appreciated!

The drive was LONG but we made good time (even after I made him stop a few times - freezing rain most of the way, thick fog, and extremely windy in northern Ontario made for a couple of adventures... like spinning out in the prairies!). Thankfully no damage and we made it in one piece - he is the best judge of where it's okay to park backwards in the grassy median! My tummy was not happy with the constant swaying sensations, but a few extra gravol made things more bearable and we made it to Hamilton in time to unload and return the trailer before surprising Rori at school :)

DONE!!!!

It has been a VERY long 3.5 months. But I am FINALLY through and finished with the first rounds of surgeries & treatments!!! Counting down the days now until I am back with my girl... A real hug is so much better than a chat on the phone!

With the final treatments yesterday, I was also shown the MRI pics for the first time (by the surgeon who also gave me his email to keep him updated with my progress!). I thought he was joking at first when I asked him to define "successfully removing a large mass", which is all anyone had told me previously, and he held out his fist. Then he pulled up the pics. Apparently it wasn't so much a 'brain bug' as it was a brain rat! He told me that it was larger than the frontal lobe which was moved around by the growing mass. This final conversation gave me both the answers and perspective I was looking for. It explains why they were so surprised at how quickly and completely I recovered from the surgeries (no physical/mental deficits anyway!) and why they would not let me leave without a 'person' being available 24/7.

  The large white spot is the tumour pre-surgery...

It certainly explains the headaches and dizziness I had been experiencing all year - though Dr Kelly also told me they have no way of finding out how long it had been there. Apparently this was his reason for giving me the worst case scenario's of not being able to speak or use my right side after surgery! Forever grateful that I did not have to go through months of therapy to return to 'normal'... Recognized a couple of the patients who were still in the hospital from when I was there back in October - very sad, I couldn't have handled that!

Now it's time to finish getting rid of my things, packing up what I'm keeping, and get back to my babe so I can figure out a brand new (to me!) city and routines! Thankful that my sister lives in the same city as Ontario's equivalent to the TBCC here in Calgary - makes organizing the switch and follow ups much easier for everyone!

Happy Holidays to everyone, thank you all again for the love & support - near and far I'm sure that the prayers and good vibes have helped me through this journey!

One week to go!

I'm still amazed at how timing has been working out so smoothly for everything that I am dealing with. Sure I'll still have to sort out finances and how to finish my degree (maybe - depends on follow-up results that I won't have for another couple of months!) once the holidays are over... But until then, life is actually going pretty smoothly. 90% ready to move - car has been picked up (YEAH!!!!) since I have no idea when/if I will be allowed to drive again :( More to find out through the follow-ups!

Another great evening out with friends last eve - thankful that I have so many who are willing to drive me about as requested and who are so amusing - makes it much easier to stay positive (even when dealing with side-effects like "pooffy-steroid-face syndrome" and "gaseous-chemo-effect")... but those are minor compared to what so many people at TBCC are going through, so I won't complain too much (I hope!).

Now, I just need to stop having panic attacks over how much there is to do this week (not much really - most has to wait until after the charity does it's p/u Thursday anyway!)... Good thing for distractions! And for actually getting sleep last night - almost 7 hours!!!! Once I wake up enough, I may even feel human-esque again!

Hugs and love to all the people in my little world who have been so supportive <3 <3

Three Months Ago Today...

...My life was changed forever. The day before had been my last at work out in Morley as I had an MRI apt early in the morning (Aug 27) and needed the long weekend to prepare both Rori and myself to begin school Sept 1st. Amazing how quickly plans change!

Three months feels like a LONG time when you are away from your child, my heart, but I am so grateful that my family (especially J!) have been so supportive and accommodating through this process. Things are working out amazingly well - I leave Calgary in 2.5 weeks, after final radiation treatment on Dec 11th, and my baby brother is coming out to haul a trailer (plus me!) back to Hamilton.  My referral for follow ups in Hamilton are in process, I have spoken with their Juravinski Cancer Center to confirm move dates and they will schedule ASAP around the holidays. Things are looking positive!

If anyone needs random kitchen/cleaning items let me know ;) Trying to give away most of my things as they will not be needed, or have been given to me, etc. Luckily there are some families in my building who are collecting furniture as I empty shelves etc, but no one seems interested in more dishes or plastic storage containers (which apparently I have WAY too many of! LOL). Hoarding and over-buying are NOT conducive to easy moves!

Anyway, it has only been three months but it feels like a lifetime. And my roller-coaster is really just beginning! Almost time to go start a  new life in a strange place...

Sad tummy day :(

Mostly just posting this for my own tracking... I really haven't had any issues with my stomach (other than no desire for food the few hours after radiation) since I came home from the second surgery. Today I woke up, started my coffee, made my smoothie, took a sip, and was DONE. Not exactly nausea, no vomiting, but more like it was sitting in my throat and refused to go down. Oh well. As I joked with the radiation tech & nurse - I could def stand to lose 20-30lbs so am not that concerned about not having any appetite for a day! They agreed, but put notes in to follow up with Dr at next weekly apt (Tues) and recommended that I take more anti-nauseants  over the weekend and try to eat something even when I really don't feel like it. Soups are coming out of the freezer!
Thanks again to all the cooks for knowing ahead of time what would be eventually needed :-)

Tired but making progress!

Everything seems to pile up at times. I am tired all the time (haven't slept at all since a 2 hr nap last Saturday - even with sleeping pills)... but I feel bad complaining about little things like that when so many other things are working out much more easily than I had expected.

The chemo pills are not making me feel ill (yet - have been told it takes about 2 weeks to feel the full effects) even though my hair is falling out A LOT more now that I am on those as well as the radiation. I also ran into the lovely ladies who had offered to take me out to support groups during treatment while at the TBCC yesterday. We had a little chat about treatments, side-effects, and lack of energy to do anything! They are so sweet, and so understanding about why I am not into joining groups here - Hamilton has the same types of programs through their cancer centre and I think that those will be a good way for me to meet people once there.

My furniture is slowly but steadily trickling out the door, giving me space to pack and clean around what is left. Some of my neighbours are also in no rush for things like my desk & dresser, so I appreciate that they are near to come and take those last minute rather than try to get it all out for donation a few days before I move (a matching bedroom suit was donated to my sister in Ont for me, what comes around goes around!). The silly things that make life easier!

Now, I just need to take advantage of this last warm day before winter hits to clean up my car more (shop didn't do a great job... can't blame them - kid cars suck!) and take some pics so I can try to sell this thing ASAP! Notice for my apartment has been given, slowly checking things off my to-do list...

I feel guilty focusing on myself so much. Especially with all the hate and terror going on in the world. It makes my heart hurt to see people responding so strongly to the Paris attacks when similar numbers of innocents are killed daily throughout the Middle East and Africa. Not having cable seems to restrict my information, though I am not sure if mainstream news ever paid attention or mentioned the attacks that happened in the days before Paris. From my perspective, it seems to be that people respond much faster and more wholeheartedly to the familiar - attacks on Western society appear to hit much closer to home than the daily suffering of would-be immigrants & refugees. I hope that Trudeau and others do not stop their plans to help those in most need.

Random compliments :)

I got up this morning (after having not slept at all again last night) and decided that I had to make the best of my no-energy, no-sleep day. Within a couple of hours the steroids had kicked in and I was bouncing again :)

Day 3 of my pill-form chemo and other than a lot more hair falling out I am still feeling fairly well (no radiation on weekends helps!). I decided that I had the energy to head over to Shoppers for a couple of the supplements that I know would run out this week. At Shoppers, a lovely lady waiting at the pharmacy called out to me. She apologized for 'being rude', then complimented me on my confidence in going out with my scar and lack of hair showing so obviously. My response was 'thanks, it's only hair after all!'. She then told me a story about how one of her friends had been so vain and attached to her hair that she refused to let the dr's operate if her hair would be ruined, and ended up dying from lack of treatment.

Thanks to everyone who has complimented my short hair-style. I have never been particularly attached to my hair, but the support and compliments (even from strangers!) has certainly given me the confidence to be out in public without needing to hide or cover my head!

Two steps backwards - one leap forward!

Two days ago everything was going well. The Oncology Doctors all agreed that things are going reasonably well, I was issued the prescriptions to start chemo today as we were expecting the picc line antibiotics to be done tomorrow and my weekly blood work has been coming through clear of infection. Good news, right?!?

This morning I got a phone call from the HPTP clinic (home therapy clinic for the picc line) telling me that they are extending my antibiotics for 2 weeks because I haven't had an MRI confirming that I am infection-free. The notes to request one were on my file two weeks ago - the RN who gave me cathflow (to clear a plugged line) even asked me about it then. No one followed up until today. The picc line has been a huge pain in my arm/chest for over a month now. I felt it every time a dose started and for the entire hour it ran for (every 4 hrs!). I haven't been sleeping because it is so uncomfortable & limiting. I was incredibly frustrated with the nurse who called and told me it had to stay longer - not only would that mean a delay in the chemo part of treatment, but also a delay in returning to a semblance of 'normal' life.

Then, while waiting to go in for my radiation apt this afternoon, the machine started beeping at me (for the 3rd time this week...) that the line was blocked, again. After the radiation I went straight over to the HPTP clinic. They tried to flush the lines and couldn't get either line to flow well enough to hook back up to the pump. The nurses started discussing putting in an IV (which collapse within hours) so they could cathflow me again (would have been 3rd time) when I told them that I'm DONE. I have dealt with one of the nurses present many times over the past month and she understood. She explained the potential consequences, but after discussing my options with all three RN's who were there this afternoon - I am DONE!!!! Picc line is removed and I don't even have to go back in and argue with anyone tomorrow!!!! I had to sign a form stating that I understand the possible consequences (AMA forms), but at this point I don't even care anymore. I will follow up with the Oncology pharmacist to see whether or not I should fill the oral prescription I was given, but that can wait until morning. I am just SO relieved to have that picc line gone - no lifting for 24 hrs, but it's done and I don't even have to wear my awesome fanny pack anymore :-)

I feel like I won a huge battle and MAY even get more than 3 hours sleep tonight!!! (fingers crossed anyway!)

Time to enjoy life as an ADULT!

The past  couple of weeks have been stressful, uncomfortable, and generally frustrating. Trying to juggle treatments & appointments around ever changing schedules when the first line of treatment doesn't do what it should, while also not sleeping and being exhausted from the daily radiation treatments had me feeling very low. I was NOT feeling up to the going away party my fabulous friends organized for last Friday. But I also knew that so many had put in a lot to organize it and I didn't want to disappoint anyone by cancelling last minute. I am SO glad that I went!!

Being picked up by a Limo (surprise!) and having a bottle of wine (I'm allowed to have "a drink or two, but not a bottle") was only the beginning of a fabulous night. The glass of wine and young energy (3 kids 17-20 joined me for the ride) woke me up and helped to change my tired, stressed out mindset into one ready to be social and enjoy the company of the evening.

Many more surprises were in store at the beautifully set up event - special thanks to everyone who came out and to those who put so much effort into making the night memorable! From the radio station gifts & scrapbooks a lot of prep-work and time was obviously used by people who mean the world to us - THANK YOU!!!

The love & kindness & general silliness of the evening reminded me (again!) that life is too short to be stressed out about the small things. What I keep for the move vs what I get rid of really makes no difference (and the scrapbooks will make getting rid of many things easier!) and I should stop stressing about when things happen - it will all work out in the end :)

Friday evening returned me to the world of the living, and a great friend took me out for an afternoon of randomness on Saturday which is also greatly appreciated. I really needed these reminders to live life and have fun (especially right now while my daughter not here and I have the opportunity to be a grown-up!!!)

Thanks again to everyone near & far who have been so supportive!

Bumpy Ride

As always, I appreciate all of the offers of help from friends & family. Just knowing that there are so many I could call on makes things less overwhelming. Even when I end up spending an extra 2-3 hrs at the hospital (plugged picc lines) and have more last minute apts than expected for silly things like letting the cathflow (picc line cleaning drug) work it's magic for 24 hrs rather than 2... Or just finding the paperwork from my original surgeon with an early morning follow up apt for Monday... Wonder if that was cancelled due to second surgery and all of the other things that have been going on? Oh well... will find out tomorrow if they call wondering where I am!
Still need to work on sleeping. The radiation treatments have me feeling very tired, the steroids I had to start again (was weaned off during 3rd stay in hospital a couple weeks ago...) have me bouncing and unable to sleep... Can't find a balance it seems :(
But, even with all the icky-grossness I'm feeling these days, weekly blood work, and daily apts, I am really excited for the pot-luck being organized for next Friday, for being able to talk to my babe every couple days, and for finally starting to make a dent in the stuff we have pilled up in here! Just need to get the energy to take a few (dozen) more pics for a few more kijiji ads - see if I can sell a few things before donating the rest!
Vent session over - Hugs & Love to all :)

Side-effects and double bookings

I am very grateful for the volunteer driver program that is run through the Canadian Cancer Society. Some of the drivers are very flexible (one let me pick up a prescription and supplies for my home-care yesterday, then when he mentioned that he would be my driver again Friday I told him I have to cancel that one as I also need blood-work... He told me not to bother. That it doesn't matter whether he hangs out for one hour while I have my treatment or two hours, he will work around it!) So sweet :)

I've only had 3 treatments so far, but aside from the burning smells and headaches, I'm also noticing several very thin patches in my hair. Luckily my hair is very short now, and at least two of the patches are next to my surgical scars, but I really didn't think that I would be loosing hair so soon! Eeek!!!

The other (and hopefully final!) whiny issue I have today is about double bookings. On Monday when I began treatments, I spoke with one of the receptionists for the radiation therapy section. I explained to her that I am using the volunteer driver program (which means they are not allowed to change apt times last minute or book outside of certain hours, as they did twice for today, and only let me know while I was in yesterday!), and I told her about my home-care nurse who comes in Mon & Thurs to change the dressings & lines for my med bag. The way that runs, she has to come in after all doses have been given (around 11 am) and be finished before the next dose is programmed to start (1:30 pm). So when I got the schedule for next week from radiation, and both Mon and Thurs had 11:15 am apts, I got a wee bit upset (also have to call the drivers by Wed to book for Mon!)... The main receptionist was not at all helpful, she sent me to talk to the unit staff who told me that there were NO notes on my file, so come in at the previous scheduled time for today (too late to change the drivers' times!) but that she can't do anything about next week. I called in once home, spoke to three people, but FINALLY got it sorted for next week :-)

Hoping now that I can get my full treatment schedule when I go in today... As was asked for on day one!

Okay, whine-fest over! Still having fun sorting and trying to decide what I keep & what goes, but it seems like I am making WAY more mess that space! LOL A few more weeks and everything has to be done! LOL

Radiation

Yesterday I began treatments. After the home-care nurse came in to change the tubes & dressing on my picc line a volunteer driver from the Canadian Cancer center came to take me over to the TBCC. It was a very different experience. I waited for nearly half an hour, but during that time volunteers went through twice offering snacks and drinks to everyone in the waiting areas. As far as I can see, having cancer gives people a strange form of privilege! Free rides, free food & drinks, free classes (if I ever get around to attending them!)... And a great deal of compassion & support from everyone (thanks all!)
The treatment itself was very different. The radiation therapists went over some of the side-affects of treatments - headaches, nausea, etc. They didn't mention the strange burning smells (which apparently half of the brain patients experience... makes me wonder when the nausea is going to hit since they DID mention that one...). They also did not mention that it was the bed itself that moved around, not the radiation machine. That was a very odd sensation as well, especially when I was trying to focus on the picture on the ceiling!
The good part is that it was a fairly quick procedure. Once I was in the room it took less than 15 minutes. Today I have my first weekly follow-up with my radiation Dr. after treatment. Only 32 more radiation sessions, 7 follow up apts with this Dr, 7 more rounds of blood work (for both the antibiotics and then for the chemo), 5 more home care nurse visits... The count downs are on!
Take care all :-)

Sleepless Nights

I have had problems sleeping for my entire life. Right now I am so tired I feel like having a melt-down. The sleeping pills prescribed for me to take through treatments are not helping - I even took a second one around 2 am and still did not get to sleep last night. I haven't slept since Thursday night and am completely exhausted today. 

I don't mean to complain, but I hate this feeling and the complete lack of motivation. I have less than two months to not only get through  the first round of treatments, but also to sort, pack, sell, and donate everything in my apartment. 

Okay... whine-fest over, time to go work on Rori's room... maybe ;)

Seizures Redefined

I used to think of seizures as something obvious and fairly extreme. The full-on shaking, black out, and loss of bodily control that many epileptics experience (I have witnessed many of those in my life).
During yesterday's education session the oncology nurse explained two other types of seizures. Apparently my experiences of not being able to speak for several minutes, while remembering everything and still having full control of movements, is classified as a "simple partial" seizure. Thankfully I have not had any of those episodes since being on the anti-convulsent medication that was given to me when I first went into hospital at the end of August, but it is still unnerving to realize that I could not recognize a seizure even while I was having them. Plus - what does this mean for me being able to drive again? I know I am not allowed to drive right now, but does that mean I have to wait the 6-12 months before I can? Yikes :(

Learning a New Language

First of all - thanks to everyone for the unending support and generosity.

I feel now like I am learning a new language. The language of cancer and treatments and options for care, personal directives and end of life care preferences... A lot of things that I had never felt the need to think about two months ago.

But along with that I am also learning about the purely selfless giving nature of so many people - along with friends & family donating $ and food (thank-you!), complete strangers providing care packages of things they feel would have been useful during their own treatments, the other person in attendance at the teaching session today who offered me a ride home (her daughter as driver) and waited while I picked up my homecare supplies for tomorrow's apt, the volunteer driver services receptionist who worked through my schedule of treatments for next week...

Yes, I get to start radiation therapy on Monday! I was told that they prefer to start chemo at the same time, but because of my antibiotics the chemo will have to wait until after Nov 13th. My choice - I told the chemo Dr at my apt yesterday that I plan to be back in ONT with my daughter for Christmas, so they need to figure it out around that. I was also advised that flying is NOT recommended as it has some major effects on the pressure in peoples' heads. I had been told many people fly back and forth for treatments between Calgary and Hamilton... Apparently just not people going through treatments for brain-cancer! So it will be a long drive :)

So now I am home and discovering that I can take care of myself and stave off boredom by doing many small things throughout the day, alternating with 'rest' times (AKA netflix! LOL). Yesterday I was out for 6 hrs for all of my apts and travel time, today was thankfully only 5 hrs because of the ride home. I'm not sure if I am looking forward to the treatments starting or not - 6.5 weeks, but I can at least arrange for rides most days and not have to take transit! LOL

Also, I'm glad that my baby has adjusted so well to life in Ontario - she already has a BFF and is at her birthday party this evening <3 I got to Skype with her while she was staying with another sister & the children she nanny's (whom Rori hung out with here before they moved to ONT a couple of years ago!) on the weekend, and she looks SO grown up! I can't wait to see her again, but knowing how well she is doing makes me very glad that I was able to send her off so quickly.

Hugs and love to all!

Roller-coaster Ride

The past few weeks have been CRAZY! (and of course I couldn't figure out how to blog from my phone!)

When Lisa was here (now my Mum instead) she was pushing me fairly hard to get out and do 'normal' things. Like one Saturday we rode the c-train up to the mall to grab some groceries, and stuff them in a back-pack to bring home. Which is what I blamed my extreme stiffness and shoulder/neck pain on the next day. Until the Monday after when I started vomiting and could not keep water down.

Back to ER! I bounced around there for a couple of sleepless days/nights. Was treated to CT scans, spinal taps, and multiple attempts to get blood from my non-existent veins. Basically I became a very ill pincushion in the first couple of days before they decided to get me onto broad-spectrum antibiotics (I also had a great fever that made me fairly delirious).

The docs finally found me a room back up in nuerosurgery and decided that the MRI and CT scans showed that there may be a cyst of infection, and that the space where my original tumour had been removed was getting bigger instead of smaller, so yet another surgery was required.

This time around was much less difficult to get over than the first surgery. I have NO sense of time in the initial recovery unit when I woke up, but I was able to speak clearly with the nurses there, see what the room looked like, ask questions, etc. After the first surgery I was unable to name the month or open my eyes, so this time felt very good.

My hold up this time (I was in hospital for my longest stay yet - 2.5 weeks!) was a combination of the cultures they took needing to grow something so they could narrow down the number of IV antibiotics they sent me home with - I was on $7000 worth of meds/mo for ten days, no way could I afford that without any coverage (had to drop U of C so not covered there anymore)! All worked out though, am now on one affordable IV med (plus pills) and thankfully my status as a student & single parent for the past few years did qualify me for the Adult Health Benefits through the government here. Thank-you taxpayers!

From the time that they finally grew a bug (can't remember what infection I have, just that it stems from something commonly found on peoples'hair follicles!) it took 3 more days for me to get out. Talk about frustrating!!! BUT, at least I was able to get my radiation mask finished for TBCC treatments to start in a week or two (after they call with dates/time), have been taught how to change my med bags daily, and have a homecare nurse scheduled for 2x per wk.

It all just took a LONG time to sort out! Plus one of my pic line ports was blocked from the weekend until the day they let me leave (about 5 days I think), which is a huge no-no for sending someone home. Oh well.

Through it all I've had some great support, plus have been able to talk to my baby every couple of days. so proud of her and how well she is doing both in school and socially. I love her resilience and am so glad I have been able to raise such an awesome little girl :)

BOOM!

I feel like I've been hit by a bus.
OVERWHEALMED barely describes how I feel today.
Yesterday's news blew all plans for the future out of the water.
Trying to stay positive about things, but when given the news that you are looking at 2-5 yrs WITH treatments... An aggressive grade 3 anaplastic astrocytoma is what the pathology determined was removed. The surgeon got the 'body' of the bug out, but the 'legs' run too close to major portions of of primary brain functioning areas to try to get them out with anything other than radiation and chemo.
I don't know how to feel today. I know that the statistics are skewed. Based on people aged 18-80 and in all states of health when they begin treatment. I do have that on my side - relatively young (35 yrs) and healthy... Resilient and as I keep saying, I am a survivor! Being positive is getting REALLY hard though :-(
Rori will not be coming home at winter break after all. Instead, I will be heading out to Hamilton after first round of radiation to stay with my sister who is a registered nurse and lives close to the Hamilton Cancer Center. So much for staying here and bringing my baby home!
I feel guilty that I sent her off so quickly, no chance to say good-bye to her friends and people here, visit her favourite places one last time, etc...  But she has settled in in her new school so well and is such a smart and happy girl that I know this is for the best.
I appreciate all of the support and love coming from everyone both here in Calgary and across Ontario.
I have A LOT to deal with right now, trying to keep my shit together while all I can think is FUCK!!!! Apologies that I am not exactly responding to anyone - I will see if I am up for it this afternoon!
Hugs and Love to everyone

Two Weeks Post-Op

Amazed at how exhausting recovery can be. Trying to keep the med-schedule straight has been a challenge, but at least I am now on the last changes-day and will be down to 2x per day tomorrow. Yeah!

Back and forth feeling fabulous or feeling like I've been run over by a truck. Steroids are NOT helping with sleep, nor are the sleeping pills I take at bedtime. Sucks that I cannot get more than 3-4 hours a night, but a couple hours of laying down in the afternoon for a sleepless rest seems to help at least. Slowly learning to listen to what my body is telling me. VERY challenging for someone who values their independence and is as stubborn as I tend to be!

I keep thinking about all the awesome people in my life who are being so incredibly supportive, thank you all :)

Big days and pushing hard

Recovery has been amazing, but I also know that I have been pushing myself HARD. Unsteady and exhausted after outings... Made it on the C-train today and all the way over to Devonian Gardens for an hour! Only felt nauseated for a short time on and off the train. Will have to remember to ask about what I can take to keep my tummy calm - right now I am on four prescription meds, plus tylenol, and am nervous about adding anything else that may not interact well.

Treatment plan will be discussed at an appointment Thursday morning at the TBCC. I am trying to stay positive as much as possible, trying to get myself ready for bus travel. The train today was a test. I think we will see how I feel before taking the bus to the hospital, it may not happen!

Thanks again to all the offers of food and support, even more thanks for keeping germs to yourselves - I know how bad back to school can be for illnesses! 

Take care 

Gratitude!

I am so grateful for living where I do. I had NO concept before all of this on how important a walk-able neighbourhood would become. Today has been a BIG day for me. With Safeway across the street, I made it around the store for over 30 minutes this morning. Came home for a few hours break before heading out again.

Riley park is beautiful, even though 10th street is busy to get there. Only a few breaks on the way (elevators and a lot of motion still bothers my tummy), but luckily I have many places to pause and rest as well as an attentive nanny for company. 

The squealy-pop healing sounds are slowly subsiding (apparently these are normal!), but still annoying and frustrating. Drives me nuts at times. 

Thank-you to everyone who has been so supportive! I know it seems annoying, but I am trying to stay as connected as possible with life before surgery and diagnosis (at least these headaches etc have a reason behind them!). I really DO want to hear from people, just may not always be up for answering right away. I appreciate all the sicko's who are not sharing their germs - coughing does hurt and I could not imagine trying to blow my nose right now! LOL

GRAPHIC CONTENT WARNING!!!! (POST-OP PICS)

Heads up that these are NOT kid-friendly!!! I think I scared the neighbour when she popped by to bring me some food ;-D 

Day after bug removal- OUCH!!

Swelling bad enough to not see, but was expected!

Recovering...

At home, before staples pulled!

After staples pulled :-D

Staple Removal Day :-)

Headed back to the surgeon this morning for staple removal.
Sprung a couple sprayers from the staples being pulled, unbelievably strange sensations, but apparently this is 'normal'. Pathology came back as a stage 3 astrocytoma, treatment plan TBD next week at the Tom Baker Cancer Center. Radiation for sure, maybe chemo too. The surgeon (who did the staple removal today as well the surgery last week) isn't involved in those decisions, he leaves that up to the TBCC experts.
Answers are coming slowly!
Thanks again for all the support :-D

One Week Post-op

So much has happened so fast. Too many people to thank for their help & support & encouragement.

Love to all. 

Cant't help but feel guilty for not being there for all those whom have begun to share their stories of grief and loss and illness - I wish I could have been a better support, I think regrets are overwhelming some days.

The first time I heard 'cancer' was this past Friday, September 11. Officially the surgeon and team (with great steady hands!) removed an Astrocytoma from the left frontal lobe of my brain. I am eternally grateful for no slips! Pathology is being reviewed to determine grade - at first, I was terrified because the lady from Tom Baker indicated that it was grade 3 or 4. Now they are deciding between 2 & 3 to help determine future treatment. 

I tire very easily right now. My memory is good, like I said - no slips, just a lot of weakness in my right side, but getting better with amazing care from my sister Lisa. She has been great - and today is her birthday ;)

I remember the frustration I felt waking in the Recovery Unit and not being able to say 'September'... Overhearing the nurses arguing and trying to get me to tell them the month and not being able to explain that this was expected was beyond frustrating - thankfully someone FINALLY, I have no idea on how long it was, explained that to the RU nurses and they stopped trying to force a whole word. Those came later :-) 

The repetitiveness, vomiting, and nausea wore me down a lot. Panic attacks hit over the weekend, but by Sunday I was ready to come home! 

Not allowed to drive for awhile, and my personal nanny has a seizure disorder which has prevented her ever getting a license, but we are well and as I have mentioned to a few people, I am a survivor and this changes nothing in that regard! 

Rori is being well loved and cared for in Ontario for the term, thank-you so much Auntie Jessica! My goal is to have her come home over the winter break. This WILL happen :-) 

Last minute prep-work :)

So... Check in is at 5:00 tomorrow morning. Cab is booked for 4:30.

I am beginning to feel anxious, but am also confident all will be well... Eventually. The docs just need to get this damn bug OUT!!! Mixed feelings all round tonight.

I know Rori is being well cared for, I had a good little chat with her this evening. I explained that I won't be able to talk to her for several days (at least!), wished her well on the beginning of school tomorrow (Ontario actually does begin after labour day), talked about her anxieties (new school is MUCH bigger than Hillhurst was!) and encouraged her not to be frightened. She will be fantastic, I am sure of it. That makes this all so much easier :)

As for me... I will survive. That is the one thing I am sure of. The journey beyond bug-removal will be long, painful, and full of anxiety and pressure, of that I am sure. But I will survive.

In the beginning....

I'm not sure where all of this started, but I am hoping to create a record of the journey - just in case I loose my memory, my ability to speak, understand, etc. At this point all that I know for sure is that I have a tumour. A fairly large one, on the left frontal lobe of my brain.

It all started, I think, last year (fall 2014) with the headaches. Not a new phenomenon by any means, I have been suffering from headaches since childhood. I became frustrated though with the limitations I felt they were placing on my life. I have never had regular medical care, but all the flyers in my mailbox for Foothills Medical Clinic eventually determined that I make the call, and make an appointment.

The doctor at the clinic ran blood-work, advised that I was anaemic, and sent me on my way. Eventually I returned again, spring 2015, with more severe headaches and dizziness. I thought it was odd that she told me that I no longer needed to take iron, but accepted that, stopped with the iron, and took the prescription for chiro treatments and massage. Neither helped.

June 11 (I remember the exact date because it is one of my sister's birthdays!) I went to work in Morley then to grab lunch at the local subway. At the subway I could not order my meal. I couldn't spit out or use language that should have been simple. Too embarrassed to do anything else, I sat for a few minutes until my speech returned, then fled the restaurant. By this point I had also been experiencing tunnel vision once or twice per week.

July 15 - documented on payroll, I became extremely dizzy while standing there talking to another staff member and was taken to the ER in Cochrane by co-workers. The doctor there ran many tests, including blood, urine, EKG, etc. He took my blood pressure while sitting and standing. The difference was a drop of about 15 pts. I wasn't sure what that indicated, but neither was he. They let me go after a few hours, once I had a confirmed apt with my family doc the next week.

She advised that I was not anaemic (apparently I am still, according to the Foothills doctors!) , but sent me for an MRI anyway. Luckily that took less than 6 weeks to schedule.

On Thursday August 27, 2015 at 7:15 am I went into the Foothills hospital for the MRI. And they did not let me leave until the Surgeon, Jon Kelly confirmed an appointment for me this coming Tuesday Sept 8th. That was late Monday the 31st of August.

Five days. Three nights of not being allowed to eat or drink anything from midnight until they decided that there was no way I would have an operation that day. I know that Trauma patients come first and I agree, they do take OR precedence. I just wish that the team on neurosurgery had been keeping me more well-informed. That's all. Simple communication, options, and discussion.

I am always and forever grateful for my sisters (Jessica for taking Rori back with her to Ontario for the semester, Mary for babysitting at her home to allow that to happen, and for Lisa who is here now with me...)
Thank-you to all the friends and acquaintances who have also come through - Stephanie for picking up my child from her sleepaway camp Friday morning, Jennifer for taking her overnight and collecting Jessica from the airport as I was unable to escape the hospital, Alanna and Danielle for coming to visit and driving my sister and child around (and use of discounts!), and Deirdre for being such a huge support at the hospital.
Thank-you all!