Crazy as it sounds, I have decided that since I don't have a "later" in life to look forward to (or push things off until?!?) I need to DO some of the things I've been putting off because of time/energy/finances/etc... So this summer I have committed to o skydiving with a group being organized by one of my sister's friends, and have signed up for the local Mudhero event with my siblings and nephew (Rori is doing the kids' event with her cousin). Now I just need to get into good enough shape to make it the full 6k plus obstacles! LOL Playing in that much mud does sound like a blast and if nothing else, we all get a t-shirt for our troubles ;-)
That would be the beginning of my bucket list. I also need to look into the whitewater rafting adventures since I never did get around to doing that in the mountains - Rori was too young so once again I put it off for 'later'. Not that I have officially written out a bucket list, it just feels like it's now or never, so I should really get on things!
Rori had an awesome time last week at her new kids' group through Wellwood (free programs for families of & those diagnosed with cancer). Thankfully they have a shuttle for the Wednesday evening program so it doesn't interfere with other previously scheduled activities, and they also had a PA day camp (which she also LOVED!). The people there are amazingly supportive and kind, very grateful for the positive energy they offer. It was also interesting that she came home with very age appropriate questions - the staff had mentioned that they don't encourage discussing cancer etc, but that it does happen as that is the one thing the kids are guaranteed to have in common. She came in asking about my chemotherapy (which hit harder this past week than expected, but not horrifically - thank goodness!) and if the cancer was going to come back. I explained to her that the chemo is poison to help keep the cancer from growing & spreading, but that yes it will come back. She barely paused to absorb it before flitting on to show me the game and treasures she had made during the day camp. Very proud of how well she is dealing with this!
And now I am just VERY glad that my week of follow-up chemo is over, three weeks off until the next round :) At least I have a better idea now of what to expect and how my body will react to the much heavier doses. I can be better prepared for future issues now that I know!
Sunday 31 January 2016
Thursday 21 January 2016
MRI follow up & onto chemo...again
I miss the sun.And being self-sufficient. I HATE relying on other people, my patience and personality do not do well when I can't just get things done as I need/want them to be. My biggest problem with that right now is that I just don't have the energy to do much of anything beyond basics of tidying up and cooking. I used to get so much of my energy from the sun, but it has been cold & grey & snowy here all week.
Yesterday was my MRI follow-up appointment. It was almost funny because the Dr who had insisted that I should have someone with me at the last appointment barely came in the room this time. Instead, an intern ran through all of the typical neuro-tests, provided a quick report of the MRI, and didn't answer any questions directly. Basically what I gathered is that there is no regrowth yet, but more fluid build-up (could explain the sloshing in my head! LOL) and that I am all good to start the heavy-duty doses of chemo. 5/28 days for 12 cycles. One of the most frustrating parts of the morning was when we went to pick up the prescriptions, after telling them multiple times that I do not currently have any drug coverage (except for the chemo pills which are thankfully covered under a special program) they still prescribed a $500 stomach pill. It only took over an hour to contact a doctor in the clinic who was willing to change it back to the generic form of Stemotil that I had been taking with the chemo in Calgary. Listening skills are apparently not required for med students/staff, and just added to my impatience - even though it was my sister missing half a day of work for no apparent reason that was really bothering me the most. Frustrating!
We decided that running a Mon-Fri schedule for the chemo would be best as the kids are in school and it will hopefully not be as rough as it would be if I were to be chasing them around and travelling while doing treatments. This way I can at least rest if needed and not worry so much about playing up to the 'normal'that seems to be expected. Plus that scheduleit will let me go have some fun in Muskoka this weekend with family - celebrating my niece's 3rd birthday and hopefully getting the toboggans out for awhile :) Planning a bonfire with the kidlets, so looking forward to a few good days!
Yesterday was my MRI follow-up appointment. It was almost funny because the Dr who had insisted that I should have someone with me at the last appointment barely came in the room this time. Instead, an intern ran through all of the typical neuro-tests, provided a quick report of the MRI, and didn't answer any questions directly. Basically what I gathered is that there is no regrowth yet, but more fluid build-up (could explain the sloshing in my head! LOL) and that I am all good to start the heavy-duty doses of chemo. 5/28 days for 12 cycles. One of the most frustrating parts of the morning was when we went to pick up the prescriptions, after telling them multiple times that I do not currently have any drug coverage (except for the chemo pills which are thankfully covered under a special program) they still prescribed a $500 stomach pill. It only took over an hour to contact a doctor in the clinic who was willing to change it back to the generic form of Stemotil that I had been taking with the chemo in Calgary. Listening skills are apparently not required for med students/staff, and just added to my impatience - even though it was my sister missing half a day of work for no apparent reason that was really bothering me the most. Frustrating!
We decided that running a Mon-Fri schedule for the chemo would be best as the kids are in school and it will hopefully not be as rough as it would be if I were to be chasing them around and travelling while doing treatments. This way I can at least rest if needed and not worry so much about playing up to the 'normal'that seems to be expected. Plus that scheduleit will let me go have some fun in Muskoka this weekend with family - celebrating my niece's 3rd birthday and hopefully getting the toboggans out for awhile :) Planning a bonfire with the kidlets, so looking forward to a few good days!
Saturday 16 January 2016
Stress, guilt, and general craptastic-ness
So...Here I am in a strange city trying to figure out life. Only I feel guilty because my sister insists on driving us to all of our appointments and activities (appreciated, but in reality I do need to figure out how to get places on my own!), and she has more than enough stress with trying to find a new tenant for her soon to be vacant basement suite plus many other life-stresses that I feel Rori and I are compounding.
Then there is Rori. She knows I have cancer, but not the prognosis. In the week after explaining my diagnosis there have been at least three cancer related deaths of famous people plastered all over the news. This is not helping her cope as now I am hearing nightly (at bedtime and around 3am when she typically comes crawling in with me) that she doesn't just "love me" but that she "needs me", and she keeps talking about moving back to Calgary even though I have explained many times that there is a good chance I will never be able to drive again and that if she chooses to move back once she is grown up, she certainly can. The referrals for family counselling are in the works, but like the sleep therapist, they are booking well into February. Yeah.
I'm not sure if it's the total lack of sleep, lack of energy, or lack of routine, but I feel more crappy now than I have since getting my picc-line out last November. Nausea, headaches, and exhaustion are unrelenting except that the steroids also have me wanting to eat constantly. Not a pleasant combination. At this point more meds seem ridiculous and don't really seem to help much. My MRI follow up was postponed until this upcoming week (instead of last Thurs), and there may be questions about the chemo continuing (according to the nurse who called to change the appt) which has me fairly concerned too - did she misread the charts or are things really looking that badly? I guess I will just have to wait and see...
I am at least still trying to hold onto the positives - Rori has many friends in the neighbourhood (one kind parent has picked her up today and taken both her daughter and Rori to another friends' birthday party), and she has been playing with another girl who lives across the street. Knowing she is at least having fun and still doing well in school almost makes up for the lost listening skills and the sassy attitude she has developed since our reunion. Slowly getting back to routine and relearning listening skills, but it will take time. I'm also slowly getting back into activities even though I haven't really gotten Dr's okay - I had been told to keep exercise to mild-moderate for around 30 min/day while in treatment and to try not to get to the point of working up a sweat, but with all the weight I've regained this past year it really does feel good to go to zumba or swimming or skating, especially when the last two are also good bonding times with my not-so-baby.
Sorry for the ramble/rant - but I do feel better now that I have a few things off my chest! Hopefully this week will be smoother and I will be able to sort a few more things out - paperwork and applications are not as straight forward as they need to be - more stress ;)
Missing all of my Calgary friends - new number is 289-527-6643, text anytime (I will try to move contacts over, but is a SLOW process with silly new phone!) Take care all <3
Then there is Rori. She knows I have cancer, but not the prognosis. In the week after explaining my diagnosis there have been at least three cancer related deaths of famous people plastered all over the news. This is not helping her cope as now I am hearing nightly (at bedtime and around 3am when she typically comes crawling in with me) that she doesn't just "love me" but that she "needs me", and she keeps talking about moving back to Calgary even though I have explained many times that there is a good chance I will never be able to drive again and that if she chooses to move back once she is grown up, she certainly can. The referrals for family counselling are in the works, but like the sleep therapist, they are booking well into February. Yeah.
I'm not sure if it's the total lack of sleep, lack of energy, or lack of routine, but I feel more crappy now than I have since getting my picc-line out last November. Nausea, headaches, and exhaustion are unrelenting except that the steroids also have me wanting to eat constantly. Not a pleasant combination. At this point more meds seem ridiculous and don't really seem to help much. My MRI follow up was postponed until this upcoming week (instead of last Thurs), and there may be questions about the chemo continuing (according to the nurse who called to change the appt) which has me fairly concerned too - did she misread the charts or are things really looking that badly? I guess I will just have to wait and see...
I am at least still trying to hold onto the positives - Rori has many friends in the neighbourhood (one kind parent has picked her up today and taken both her daughter and Rori to another friends' birthday party), and she has been playing with another girl who lives across the street. Knowing she is at least having fun and still doing well in school almost makes up for the lost listening skills and the sassy attitude she has developed since our reunion. Slowly getting back to routine and relearning listening skills, but it will take time. I'm also slowly getting back into activities even though I haven't really gotten Dr's okay - I had been told to keep exercise to mild-moderate for around 30 min/day while in treatment and to try not to get to the point of working up a sweat, but with all the weight I've regained this past year it really does feel good to go to zumba or swimming or skating, especially when the last two are also good bonding times with my not-so-baby.
Sorry for the ramble/rant - but I do feel better now that I have a few things off my chest! Hopefully this week will be smoother and I will be able to sort a few more things out - paperwork and applications are not as straight forward as they need to be - more stress ;)
Missing all of my Calgary friends - new number is 289-527-6643, text anytime (I will try to move contacts over, but is a SLOW process with silly new phone!) Take care all <3
Sunday 10 January 2016
Holidays & follow ups & life goes on
As great as timing worked out for my arrival in Hamilton (one sister in Mexico, another here babysitting with her two little ones, and a week before christmas)... It was pure chaos!
With only a few days to unpack, organize, and shop for the holiday while running around to 5 or 6 different Service Ontario places to try to find one that could process my applications for a drivers licence and health care cards (which is apparently MUCH more complicated when you have previously lived in the province!) I was DONE. Then we drove out to Muskoka to spend the holidays with more of the family.
Figuring out how dynamics have changed in the past decade or more is an interesting challenge...
Now that the kidlets are back in school and a routine is starting up again things are smoothing out and flowing much more easily (for me anyway!). Have had an all day apt at the Juravinski Cancer Centre, then an MRI follow up last Friday. Continuing chemo treatments will be paid for by a special program, and Dr Torres is more than willing to classify me as disabled as my medical EI is over now. I've even managed to connect with Wellwood (the equivalent to Calgary's Well Springs) to sign Rori up for an evening cooking program that starts at the end of the month as well as a free PA day camp, and Reiki and Yoga for myself :) Slowly learning my way around this city, but since it sounds like I won't be driving again I really need to figure out transit! That could take awhile...
More appointments this week, more chats with child (she now knows I have cancer but not the prognosis yet, and she was able to come in and look at the MRI machine to see where they get the special xrays).
I find it very interesting how many free/affordable programs there are here - even compared to Calgary. Timing works out perfectly for me to do a free swim with Rori after her lesson once a week, and we got out skating yesterday after picking up a new library card. It will be much more convenient if things ever cool off enough to make a rink in the park across the road as I'm told they normally do :)
I know it's been a long time since I updated, but hope everyone has had a great holiday and first week back to school for all the kids out there - thanks again to everyone for all the support and love <3
With only a few days to unpack, organize, and shop for the holiday while running around to 5 or 6 different Service Ontario places to try to find one that could process my applications for a drivers licence and health care cards (which is apparently MUCH more complicated when you have previously lived in the province!) I was DONE. Then we drove out to Muskoka to spend the holidays with more of the family.
Figuring out how dynamics have changed in the past decade or more is an interesting challenge...
Now that the kidlets are back in school and a routine is starting up again things are smoothing out and flowing much more easily (for me anyway!). Have had an all day apt at the Juravinski Cancer Centre, then an MRI follow up last Friday. Continuing chemo treatments will be paid for by a special program, and Dr Torres is more than willing to classify me as disabled as my medical EI is over now. I've even managed to connect with Wellwood (the equivalent to Calgary's Well Springs) to sign Rori up for an evening cooking program that starts at the end of the month as well as a free PA day camp, and Reiki and Yoga for myself :) Slowly learning my way around this city, but since it sounds like I won't be driving again I really need to figure out transit! That could take awhile...
More appointments this week, more chats with child (she now knows I have cancer but not the prognosis yet, and she was able to come in and look at the MRI machine to see where they get the special xrays).
I find it very interesting how many free/affordable programs there are here - even compared to Calgary. Timing works out perfectly for me to do a free swim with Rori after her lesson once a week, and we got out skating yesterday after picking up a new library card. It will be much more convenient if things ever cool off enough to make a rink in the park across the road as I'm told they normally do :)
I know it's been a long time since I updated, but hope everyone has had a great holiday and first week back to school for all the kids out there - thanks again to everyone for all the support and love <3
Monday 21 December 2015
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 :)
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 :)
Saturday 12 December 2015
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!
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!
Saturday 5 December 2015
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
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
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