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This video is about Tricia_Award_Presentaion
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Wednesday 20 December 2017
Award presentation video
Just got this from my talented and generous uncle Allan Pinvidic so wanted to share....great for those who missed the event!
Tuesday 19 December 2017
Merry Moments Christmas
After weeks of mostly lovely brown but warm weather, the snow is falling outside now so all those people who need a white Christmas to be happy will be so ;) I personally don't need the snow. Christmas in Maui 30 years ago taught me you can still have all the joy and beauty of the season (poinsettias and polynesian choirs easily outshine any frost). Also my cane and wheelchair do a lot better without snow and ice!
It's taken me a while to get on here to post. Partly because it takes energy I am always a little shy on. Mostly because it's impossible to capture in words all that has gone on. So I'll just stay focused on one day for this posting.
There are days in your life you will never forget. Good and bad. You know - you can close your eyes and be there again. Almost smell and taste the day. Potent days and moments.
November 22 was a day like that. In the morning, I had an appointment at the hospital with Dr. Nixon, which was preparation for my fifth treatment the next day as well as to hear what the MRI of my spine and head taken the previous Sunday showed. Later that afternoon was the event for the Tricia Antonini award. It was a bit daunting to get the MRI results so close to the celebration, as the MRI could really show nothing worth celebrating. Remarkably, Dr. Nixon came in to the room with the report all smiles saying "I have good news", and it was marked with happy faces and words underlined. Head scan showed improvement and no new areas of disease development. Spine (which we were not able to directly treat) showed improvement in 2 areas and "resolved" in 1 area. Quite amazing. Bloodwork was fine so we were set to continue treatment the next day and hopefully continue what good was happening in my brain and spine.
That set the stage for the afternoon, which was rather remarkable. People poured in to the auditorium, and it was standing room only for the event hosted by Alberta Cancer Foundation (ACF) and the Bone Marrow Transplant (BMT) clinic. Dr. Brown did an awesome job at MC'ing and the people who spoke, including doctors and individuals I have deep respect for, sprinkled warm and glowing energy on me with their words. The first award recipient, an incredible woman named Elaine Moses, included kind and generous words for me in her acceptance, and had also provided a limo for me and a few family members to arrive to the event in style. Family and friends, some from out of town, doctors and nurses, some from 20 years ago, filled the room with the familiar "bubble" that has kept me going all these years. The reception outside the room after included delicious ginger cookies and the wall of people who spoke to me made me feel as close to a bride as I'll ever feel. Gratitude for all of this is impossible to appropriately articulate.
Many of you already viewed the amazing video created by Mike Lang through ACF but I've included the link here in case. A Potent Life There's also a longer story written by Diana Gaviria on their Tumblr blog here - Lessons Learned Outside the Bell Curve which does a great job of capturing a complex story in a very succinct manner. We have some video of some of the incredible words spoken that afternoon as well - it's in the process of being complied so stay tuned.
Yes, the event was spectacular. Talk about potent moments. And the award plaque is already hung just outside the BMT clinic where it will continue to communicate significant contributions people make to making the road patients and their families travel smoother, and give them more moments. Forever.
Wishing you Merry Christmas moments.....Love Tricia
It's taken me a while to get on here to post. Partly because it takes energy I am always a little shy on. Mostly because it's impossible to capture in words all that has gone on. So I'll just stay focused on one day for this posting.
There are days in your life you will never forget. Good and bad. You know - you can close your eyes and be there again. Almost smell and taste the day. Potent days and moments.
November 22 was a day like that. In the morning, I had an appointment at the hospital with Dr. Nixon, which was preparation for my fifth treatment the next day as well as to hear what the MRI of my spine and head taken the previous Sunday showed. Later that afternoon was the event for the Tricia Antonini award. It was a bit daunting to get the MRI results so close to the celebration, as the MRI could really show nothing worth celebrating. Remarkably, Dr. Nixon came in to the room with the report all smiles saying "I have good news", and it was marked with happy faces and words underlined. Head scan showed improvement and no new areas of disease development. Spine (which we were not able to directly treat) showed improvement in 2 areas and "resolved" in 1 area. Quite amazing. Bloodwork was fine so we were set to continue treatment the next day and hopefully continue what good was happening in my brain and spine.
That set the stage for the afternoon, which was rather remarkable. People poured in to the auditorium, and it was standing room only for the event hosted by Alberta Cancer Foundation (ACF) and the Bone Marrow Transplant (BMT) clinic. Dr. Brown did an awesome job at MC'ing and the people who spoke, including doctors and individuals I have deep respect for, sprinkled warm and glowing energy on me with their words. The first award recipient, an incredible woman named Elaine Moses, included kind and generous words for me in her acceptance, and had also provided a limo for me and a few family members to arrive to the event in style. Family and friends, some from out of town, doctors and nurses, some from 20 years ago, filled the room with the familiar "bubble" that has kept me going all these years. The reception outside the room after included delicious ginger cookies and the wall of people who spoke to me made me feel as close to a bride as I'll ever feel. Gratitude for all of this is impossible to appropriately articulate.
Many of you already viewed the amazing video created by Mike Lang through ACF but I've included the link here in case. A Potent Life There's also a longer story written by Diana Gaviria on their Tumblr blog here - Lessons Learned Outside the Bell Curve which does a great job of capturing a complex story in a very succinct manner. We have some video of some of the incredible words spoken that afternoon as well - it's in the process of being complied so stay tuned.
Yes, the event was spectacular. Talk about potent moments. And the award plaque is already hung just outside the BMT clinic where it will continue to communicate significant contributions people make to making the road patients and their families travel smoother, and give them more moments. Forever.
Wishing you Merry Christmas moments.....Love Tricia
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| The first award! Congrats Elaine |
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| Our sweet limo ride thanks to Elaine |
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| Amy, Tasha and I boarding the limo |
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| Holly and Heather for dinner after |
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| Me and Dr B |
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| The final product hanging just outside the BMT |
Thursday 9 November 2017
Manhattan Moments (Yes!)
Someone asked me earlier this week "what does time feel like" while I navigate life after being told I'm likely going to be around for "months not years". Time is rather irrelevant - some days are so jammed (with good and bad) that they seem you lived a month in 12 hours. And some months just evaporate in a blink.
Since the last post, I got Round 3 chemo in, and a week ago today got a modified round 4. Round 3 went better than 1 & 2 as I'd hoped - we've got the mouth sore pattern figured out so continued to win on that front. Chemo grey fatigue was no fun but more predictable, so I just embraced when the "wall" hit me and slept as often as needed.
A couple of miraculous things happened towards the end of week 2 post-chemo. Back in February Dr. Young (NYC doc) had sent me the annual Sloan Kettering transplant survivor celebration event dates. I've attended almost every year since I was first invited post transplant #3. The fares were cheap so we booked our flights and hotel and Colleen did the same. Of course, as the weeks and months evolved, it looked less than likely NYC would happen again. Dr. Nixon however was supportive of making it happen, and the timing was decent as the MSK event was Oct 24 which was in week 3 post chemo, when I'm my best. Of course, we still had to consider what it would be like navigating Manhattan in a wheelchair and how exhausting it would be. I also had to get bloodwork a day before we left to ensure there was no major issue brewing. It was a challenge to decide if all the effort and risk would be worth it. We all do this every day as you know - make choices and wonder if they are the right ones.
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| Wonderous view from a bench |
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| MMMM Coconut shrimp |
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| Totally crazy. |
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| MSK Survivor event |
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| Watching ping-pong in Bryant Park |
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| Watching people in Central Park (one, not double of them!) |
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| My Chrysler building |
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| Dr. Young and I |
Since NYC, I've been battling a bit of a cold, getting rest, and responding to some calls and emails in preparation for the Tricia Antonini award that will be presented to the first recipient in front of a small group of people on November 22. I met with Dr. Nixon in her Wednesday clinic. Bloodwork was a bit off so I only received 2 of the 3 drugs the next day Thursday and on Friday received a couple units of blood. Before the transfusion I also got to attend the groundbreaking (inside, thank goodness!) of the new Calgary Cancer Centre that I had been a patient advisor for the design phase. Time again is rather surreal.
So November continues to be focused on Alberta Health and Alberta Cancer Foundation's event and getting to some of my "good list". My eye continues to hold on to seeing "one" almost all the time, although my ding-dong head still throws my balance off almost all the time. Regardless, I plan to continue doing as much as I feel able, knowing that if I was able to get to NYC I can do almost anything. Cheers and love...Tricia
Tuesday 10 October 2017
Summer, Fall and Winter winds
Today actually looks and feels like Fall - a rare thing as we have been thrust between summer and winter weather in past weeks. Snow one day. +18 the next. Such is life - the phrase "if you don't like the weather in Calgary, wait 5 minutes" really applies.
Round 3 chemo is set for this afternoon. Learnings from round 2 improvements should help make this round a bit better again. Mouth sore strategies that result in less discomfort and greater ability to eat more, which lead to more strength, predictability of the worst fatigue days etc. My vision issues continued to slowly improve during the past few weeks - left eye opening almost fully and some of the double vision resolving. However, it's a bit like golf - "almost a par" counts the same as a bogie;) Until it fully resolves, I continue to have to use eye patches (soft, light-blue variety not the pirate kind) over one eye so that one eye works to focus, otherwise walking and talking to people is too challenging. My balance and mobility overall has improved since round 1 although far from my June/July levels - I'm able to get off the sofa or toilet myself with my cane...a jump in independence only those who have lost themselves can really appreciate.
I have also been benefiting from the use of a light weight travel wheelchair which can be folded up and placed into the car - my mom's cousin Ellen sent it to help manage the distances from the car to various appointment locations. It has been tremendously helpful and allowed me to get to appointments less tired. We have noticed how poor the "access" is for many places in Calgary - whether a lack of access or that the automated doors open into the wheelchair not away from them!
The biggest physical challenge these days is what I call "ding-dong head". It's as though someone put a heavy metal cap on me - so when I walk and my head tilts slightly, I feel like I might tip over and even fall. I've felt this sensation for a while and there are multiple possibilities of why I could feel it, with no real way of knowing ultimately the cause and if there is a potential solution or action that could reduce/eliminate it or what it might be If I could get rid of the ding-dong head my balance issues would be so much more manageable.
Up until mid-round, I continued to accumulate a list of things I would do once the vision, balance and other issues had resolved. A list of people I would respond to (being a one-eyed jack, as I call it to my nephews makes typing slower), logistical things I need to address, writings and paintings I would like to do, has accumulated during August and September. After an eye appointment, where a very efficient young eye doctor with limited empathy and communication skills asked my mom (I was in the room but I guess he assumed from my swollen eye-patched face and wheelchair seat that mom was a better bet) point blank "what's the prognosis" (I quickly responded to him by the way) and also noted blindness was a possible side effect of radiation to the brain, I realized that this may be as good as it gets. So I decided as much as my limited energy would allow, I'd start chipping away at my lists....whether it be the "shit list" (stuff like decisions of care and logistical details for my family if I'm not around anymore) or the good normal life things I'd like to do but are challenging with vision and ding-dong head. So I'm slowly working on that list - this blogpost included.
The same day the young eye doc "snapped" me with (wintery) reality, I had a text from Dr. Brown, followed by a call and then a visit the next night by he and Naree, a nurse I have known since 1997 days at the bone marrow clinic. They let me know some amazing (summery) news...an annual award is being crafted between the bone marrow program and Alberta Cancer Foundation in my name, that will recognize significant contributions by people similar to what I have done in the past 20 years. It's already moving forward since they told me and my family in person, and is an incredibly overwhelming burst of energy for me during this time. Stay tuned.
Such full days - summery and winery. While my limited energy, ding-dong head and vision issues limit me, I have tried to move on the lists, end did enjoy a few more visits, calls and shared messages with my close friends and family, including some from out of town and a birthday dinner for by brother. With help from mom and a close friend (an naps pre and post!), I even managed to use the wheelchair to get to a move at the Calgary International Film Festival (one-eyed viewing still gave me something) - I'm on CIFFs audit committee and would otherwise have done dozens of shows like last year. It was a great film but more so a small victory in maintaining a fraction of my pre-April life that I so miss.
Of course this past weekend in the few Fall weather moments we had, how thankful I am for all the summery energy everyone continues to blow my way, how it helps me get through the wintry winds that whip up out of no where and what Thanksgiving really represents. Whether a winter freeze comes tomorrow or much later, this could be as it gets, and we need to be grateful for things as they are today. Thanks to all of you, and enjoy whatever season is blowing your way today. Much love.
Tricia
Round 3 chemo is set for this afternoon. Learnings from round 2 improvements should help make this round a bit better again. Mouth sore strategies that result in less discomfort and greater ability to eat more, which lead to more strength, predictability of the worst fatigue days etc. My vision issues continued to slowly improve during the past few weeks - left eye opening almost fully and some of the double vision resolving. However, it's a bit like golf - "almost a par" counts the same as a bogie;) Until it fully resolves, I continue to have to use eye patches (soft, light-blue variety not the pirate kind) over one eye so that one eye works to focus, otherwise walking and talking to people is too challenging. My balance and mobility overall has improved since round 1 although far from my June/July levels - I'm able to get off the sofa or toilet myself with my cane...a jump in independence only those who have lost themselves can really appreciate.
I have also been benefiting from the use of a light weight travel wheelchair which can be folded up and placed into the car - my mom's cousin Ellen sent it to help manage the distances from the car to various appointment locations. It has been tremendously helpful and allowed me to get to appointments less tired. We have noticed how poor the "access" is for many places in Calgary - whether a lack of access or that the automated doors open into the wheelchair not away from them!
The biggest physical challenge these days is what I call "ding-dong head". It's as though someone put a heavy metal cap on me - so when I walk and my head tilts slightly, I feel like I might tip over and even fall. I've felt this sensation for a while and there are multiple possibilities of why I could feel it, with no real way of knowing ultimately the cause and if there is a potential solution or action that could reduce/eliminate it or what it might be If I could get rid of the ding-dong head my balance issues would be so much more manageable.
Up until mid-round, I continued to accumulate a list of things I would do once the vision, balance and other issues had resolved. A list of people I would respond to (being a one-eyed jack, as I call it to my nephews makes typing slower), logistical things I need to address, writings and paintings I would like to do, has accumulated during August and September. After an eye appointment, where a very efficient young eye doctor with limited empathy and communication skills asked my mom (I was in the room but I guess he assumed from my swollen eye-patched face and wheelchair seat that mom was a better bet) point blank "what's the prognosis" (I quickly responded to him by the way) and also noted blindness was a possible side effect of radiation to the brain, I realized that this may be as good as it gets. So I decided as much as my limited energy would allow, I'd start chipping away at my lists....whether it be the "shit list" (stuff like decisions of care and logistical details for my family if I'm not around anymore) or the good normal life things I'd like to do but are challenging with vision and ding-dong head. So I'm slowly working on that list - this blogpost included.
The same day the young eye doc "snapped" me with (wintery) reality, I had a text from Dr. Brown, followed by a call and then a visit the next night by he and Naree, a nurse I have known since 1997 days at the bone marrow clinic. They let me know some amazing (summery) news...an annual award is being crafted between the bone marrow program and Alberta Cancer Foundation in my name, that will recognize significant contributions by people similar to what I have done in the past 20 years. It's already moving forward since they told me and my family in person, and is an incredibly overwhelming burst of energy for me during this time. Stay tuned.
Such full days - summery and winery. While my limited energy, ding-dong head and vision issues limit me, I have tried to move on the lists, end did enjoy a few more visits, calls and shared messages with my close friends and family, including some from out of town and a birthday dinner for by brother. With help from mom and a close friend (an naps pre and post!), I even managed to use the wheelchair to get to a move at the Calgary International Film Festival (one-eyed viewing still gave me something) - I'm on CIFFs audit committee and would otherwise have done dozens of shows like last year. It was a great film but more so a small victory in maintaining a fraction of my pre-April life that I so miss.
Of course this past weekend in the few Fall weather moments we had, how thankful I am for all the summery energy everyone continues to blow my way, how it helps me get through the wintry winds that whip up out of no where and what Thanksgiving really represents. Whether a winter freeze comes tomorrow or much later, this could be as it gets, and we need to be grateful for things as they are today. Thanks to all of you, and enjoy whatever season is blowing your way today. Much love.
Tricia
Tuesday 12 September 2017
Patience and Predictability
Life is never predictable. I thought I knew what to expect of the past couple weeks. I did 2 of the 3 chemo drugs back in early 2015 for breast cancer, and I did radiation just this May - so I should know what to expect and based on that I would be feeling pretty good by now.
Not exactly - of course I did radition of a different kind and then almost immediately did chemo. And my brain had lesions in it that were affecting my vision. And later in the 2 weeks found out I had an infection layered on top. So my mobility has been really limited - only walk with a cane and someone's arm, need help going to the washroom. I also became weaker overall and then had the normal chemo stuff - mouth sores that limited what I could eat, grey days etc. My vision issues (basically double vision) have not resolved so that added to the muddy mix and made reading and texting a challenge
The good news is I'm seeing some improvement in most areas. My eye is opening, I have moments of seing "one" of something, infection is resolving, strength building. I am hoping for a big recovery week so I'm ready for another round of chemo starting in a week.
Friday an "access" team will try to put either a port or pick line into my chest/neck or arm, depending on what they think. I'll be happy when that's done.
I had some bright points during the chemo/radiation storm - my cousins Brant and Shawn were in Calgary on their Western Canada tour ;) last Thursday and stopped by to see me. My mom's cousin Ellen was in Calgary this past weekend so we relived some of our July lake adventure.
So I was reminded you can't really predict what is going to happen. And patience is everything. And I am so grateful for everyone's love, messages, prayers, support. And we take for granted being able to get up, go to the washroom and eat what we want.
Tricia
Not exactly - of course I did radition of a different kind and then almost immediately did chemo. And my brain had lesions in it that were affecting my vision. And later in the 2 weeks found out I had an infection layered on top. So my mobility has been really limited - only walk with a cane and someone's arm, need help going to the washroom. I also became weaker overall and then had the normal chemo stuff - mouth sores that limited what I could eat, grey days etc. My vision issues (basically double vision) have not resolved so that added to the muddy mix and made reading and texting a challenge
The good news is I'm seeing some improvement in most areas. My eye is opening, I have moments of seing "one" of something, infection is resolving, strength building. I am hoping for a big recovery week so I'm ready for another round of chemo starting in a week.
Friday an "access" team will try to put either a port or pick line into my chest/neck or arm, depending on what they think. I'll be happy when that's done.
I had some bright points during the chemo/radiation storm - my cousins Brant and Shawn were in Calgary on their Western Canada tour ;) last Thursday and stopped by to see me. My mom's cousin Ellen was in Calgary this past weekend so we relived some of our July lake adventure.
So I was reminded you can't really predict what is going to happen. And patience is everything. And I am so grateful for everyone's love, messages, prayers, support. And we take for granted being able to get up, go to the washroom and eat what we want.
Tricia
Monday 28 August 2017
Radiation Chemo and hope for quality
Short update...finished 5 radiation treatments last week. Different than the radiosurgery I did in May - shorter in length and more "widespread" in location. Objective purely to reduce vision symptoms. Outcome or success won't be realized for at least another week but I have noticed a slight reopening of left eye and some reduction in left pupil size during past couple days which gives me HOPE for next week :)
Until the eyes return walking to washroom and any other moves are really tough so mom and dad have been critical caregivers for a couple weeks now.
Dr. Nixon (oncologist covering Dr. Stewart) continues to be amazing and we will start a 3 drug Chemo cycle tomorrow bright and early. First cycle will take all day as they have to watch for drug reactions and run it real slow as it will go through my hand veins. Assuming all goes as planned, I'll feel worse later this week then start to rebound from both radiation and Chemo next week - with 5 more three week cycles after this one.
Sometime before I start the next round they will get a port or pik line in me too....making it easier to infuse treatment.
So things are busy! And very tiring! Energy limited but I have more hope the treatments will get me more quality for however long I can push this. I can read with one eye so thanks for messages love and thoughts you send. Don't be offended if j don't respond 😊💙. Love Tricia
Until the eyes return walking to washroom and any other moves are really tough so mom and dad have been critical caregivers for a couple weeks now.
Dr. Nixon (oncologist covering Dr. Stewart) continues to be amazing and we will start a 3 drug Chemo cycle tomorrow bright and early. First cycle will take all day as they have to watch for drug reactions and run it real slow as it will go through my hand veins. Assuming all goes as planned, I'll feel worse later this week then start to rebound from both radiation and Chemo next week - with 5 more three week cycles after this one.
Sometime before I start the next round they will get a port or pik line in me too....making it easier to infuse treatment.
So things are busy! And very tiring! Energy limited but I have more hope the treatments will get me more quality for however long I can push this. I can read with one eye so thanks for messages love and thoughts you send. Don't be offended if j don't respond 😊💙. Love Tricia
Thursday 17 August 2017
Symptom Control (!@#)
My vision issues continue so this will be quick. Basically MRIs confirmed disease has spread in brain and to spine. I am still processing how this could be happening but we are now into symptom control...no longer cancer control.
I have been waiting for the timing to start some cranial radiation aimed at reducing my vision symptoms and now know that will start tomorrow. Last Friday I had a CT and the mask was made. I think I will get 5-6 radiation treatments to my head in the coming week. Risks exist for things to get worse before better of course but I am ready to get going with something.
Following radiation the team also thinks doing some chemo may also be possible again with symptom control as the goal. We've already talked which drugs (IV). Nothing for spine makes sense at the moment.
Right now the way you can help me and my family the most is sending prayers, energy and/or strength to help us survive. There may be more tangible ways to help next week but right now we don't know what that looks like.
love Tricia
I have been waiting for the timing to start some cranial radiation aimed at reducing my vision symptoms and now know that will start tomorrow. Last Friday I had a CT and the mask was made. I think I will get 5-6 radiation treatments to my head in the coming week. Risks exist for things to get worse before better of course but I am ready to get going with something.
Following radiation the team also thinks doing some chemo may also be possible again with symptom control as the goal. We've already talked which drugs (IV). Nothing for spine makes sense at the moment.
Right now the way you can help me and my family the most is sending prayers, energy and/or strength to help us survive. There may be more tangible ways to help next week but right now we don't know what that looks like.
love Tricia
Tuesday 1 August 2017
Love, Lakes and Insanity
It's remarkable how life can pack the punches and the hugs all at the same time. Since my last post, it's really been a bizarre mixture of insanity, love, lakes and more insanity. I had the incredible pleasure of seeing in person so many of my "bubble" of energy people, and words truly cannot describe the intensity of love I have experienced. At the moment, issues with my eyes also make creating and typing words a significant challenge. So I'm not going to try. I'll just provide some photos and an insane health update.
July 14 insanity, After a terribly insane day July 14, I left for Penticton July 15 and did enjoy three lovely days with my oldest (friendship not age) friend Shelley, enjoying sunsets, sips and memories. Before I boarded the plane on the 15th, I noticed a very slight issue with my left eye where I felt like the "refocus" of it was a fraction of a second longer than the right.
The eye issue while mild continued to into the following week when mom and I flew to Regina on the 20th. That trip was filled with incredible moments as well including lots of rest, chill time, extraordinary eats, and overall amazing moments with loved ones and friends. Mom and I counted over 45 of the Antonini group who "stopped by" to see my at my cousin Sonia's (long drives firetrucks, and Scotland flight changes included in the many surprise visitors) - overwhelming doesn't really cover it. I had had a few bouts of vomiting earlier in the day but for the evening managed to enjoy the love.
Friday morning us Gunn girls made our way to the beautiful Qu'Appelle valley for our lake experience - Mireya's visual depiction of the weekend really says it all. Ellen's cabin has been evolving since our last visit a few summers ago and provided truly as relaxing and wonderful place of wellness with so many of my closest hearts holding me up. I did call into my oncologist back in Calgary (Dr. Nixon covering for Dr. Stewart over summer) to update my eye symptoms, and after some miracle-working collaboration by SK docs/family and her started taking some dexamethasone steroids on the 21st with the goal of managing the eye issues. The weekend wrapped up in fine form - certainly some of the best moments I had in past months despite the eye challenges - and I even got a quick visit in with another old friend before we flew back Tues night. That day I had reconnected as well with Dr. Nixon, who upon hearing the eye issues had not been fully resolved, had consulted our radiogology team, and an urgent MRI was booked for Thurs the 27th as well as direction to double up the daily dex dose.
July 31 insanity. Yesterday during an afternoon nap Dr. Nixon called my cell phone to find out if the upped dex had addressed my symptoms (not really - no worsening but not resolved). She had been able to read the Thurs scan, which seemed to indicate that there was some development of lesions (or something like that) along the meninges - lining of the brain - that may be causing my symptoms. Obviously I need to see radiology for the full interpretation, but unfortunately Dr. Veroney had suddenly passed away (!?) so she had spoken to Dr Robert Nordal, another radiology oncologist and I should be hearing from his office about a consultation appointment next week. Before they see me, they would like to have me do a spinal MRI to check the status of any metastases there (my quick google search of meninges does support their logic to checking the spine). She also asked me to again double the dex dose for 2 days (now up to 8 mg/day) and call her Wednesday with an update on symptom progress.
So once again I am stunned, with more questions than answers, and I would say that I have a bit more fear again - certainly different than Unit 11 but fear nonetheless. I hate to report the insanity and have it cast a shadow over the love of the last 2 weeks, but I know you get it. And the pics capture a bit of the immense good smashed between the insanity.
Tricia
July 14 insanity, After a terribly insane day July 14, I left for Penticton July 15 and did enjoy three lovely days with my oldest (friendship not age) friend Shelley, enjoying sunsets, sips and memories. Before I boarded the plane on the 15th, I noticed a very slight issue with my left eye where I felt like the "refocus" of it was a fraction of a second longer than the right.
The eye issue while mild continued to into the following week when mom and I flew to Regina on the 20th. That trip was filled with incredible moments as well including lots of rest, chill time, extraordinary eats, and overall amazing moments with loved ones and friends. Mom and I counted over 45 of the Antonini group who "stopped by" to see my at my cousin Sonia's (long drives firetrucks, and Scotland flight changes included in the many surprise visitors) - overwhelming doesn't really cover it. I had had a few bouts of vomiting earlier in the day but for the evening managed to enjoy the love.
Friday morning us Gunn girls made our way to the beautiful Qu'Appelle valley for our lake experience - Mireya's visual depiction of the weekend really says it all. Ellen's cabin has been evolving since our last visit a few summers ago and provided truly as relaxing and wonderful place of wellness with so many of my closest hearts holding me up. I did call into my oncologist back in Calgary (Dr. Nixon covering for Dr. Stewart over summer) to update my eye symptoms, and after some miracle-working collaboration by SK docs/family and her started taking some dexamethasone steroids on the 21st with the goal of managing the eye issues. The weekend wrapped up in fine form - certainly some of the best moments I had in past months despite the eye challenges - and I even got a quick visit in with another old friend before we flew back Tues night. That day I had reconnected as well with Dr. Nixon, who upon hearing the eye issues had not been fully resolved, had consulted our radiogology team, and an urgent MRI was booked for Thurs the 27th as well as direction to double up the daily dex dose.
July 31 insanity. Yesterday during an afternoon nap Dr. Nixon called my cell phone to find out if the upped dex had addressed my symptoms (not really - no worsening but not resolved). She had been able to read the Thurs scan, which seemed to indicate that there was some development of lesions (or something like that) along the meninges - lining of the brain - that may be causing my symptoms. Obviously I need to see radiology for the full interpretation, but unfortunately Dr. Veroney had suddenly passed away (!?) so she had spoken to Dr Robert Nordal, another radiology oncologist and I should be hearing from his office about a consultation appointment next week. Before they see me, they would like to have me do a spinal MRI to check the status of any metastases there (my quick google search of meninges does support their logic to checking the spine). She also asked me to again double the dex dose for 2 days (now up to 8 mg/day) and call her Wednesday with an update on symptom progress.
So once again I am stunned, with more questions than answers, and I would say that I have a bit more fear again - certainly different than Unit 11 but fear nonetheless. I hate to report the insanity and have it cast a shadow over the love of the last 2 weeks, but I know you get it. And the pics capture a bit of the immense good smashed between the insanity.
Tricia
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| Penticton skies |
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| Shelley and I |
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| Surprise appearance from Louise |
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| Uncle Len stops in from the truck |
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| Lovely ladies make the trip |
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| Incredible hostess Sonia |
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| Three wise guys |
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| Three amigos - we look no older? |
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| Mireya captures the weekend plan |
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| Divine dockside |
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| Captain Ellen |
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| Gunn girls take the farmers' market |
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| Creative cousins |
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| Kindergarten pals |
Monday 10 July 2017
All clear
All clear. *exhale* Check. Bone scan and CT of pelvis, abdomen and chest show no signs of metastases.
Dr. Nixon, who is filling in for Dr. Stewart told mom and I the results this morning. Repeat the scans in 4 months. We will have another appointment Sep 11, when we can look "high level"at the brain MRI booked for August 28. I also have an appointment Sep 20 with Dr. Voroney, when a more detailed review of the MRI will be shared. In the interim, I will have a bone density test and possibly see an orthopedic specialist - there may be some bone thinning in one of my hips - to see if any further action is needed.
Since my last post, the muscle issues and related pain has gotten under control mostly, with a combination of medication, physio and massage. Unfortunately, last Canada Day weekend some stomach issues settled in, and by the holiday Monday I was in the emergency room as I was too weak from the three days of diarrhea. IV fluids, tests and 6 hours later I was able to leave and by Friday I was feeling a bit better and saw some friends. Even managed to do a locked/escape room (on my list of fun things to do!) with Tasha and her family - getting out with 30 seconds left!
So the past two weekends have been one thing or another - but at least the waiting weeks are done and I feel better now. Fingers crossed, for the next 2 weekends, I'll be heading to BC and then Saskatchewan to visit friends and family. Normal summer stuff. Normal is such an underrated word. Boring and uneventful also have that reputation - but I'd take all three forever ;)
Thanks again for all the thoughts, prayers and good energy - certainly helped me in the past few weeks. And as Stampede is in full swing - Yahoo!
Dr. Nixon, who is filling in for Dr. Stewart told mom and I the results this morning. Repeat the scans in 4 months. We will have another appointment Sep 11, when we can look "high level"at the brain MRI booked for August 28. I also have an appointment Sep 20 with Dr. Voroney, when a more detailed review of the MRI will be shared. In the interim, I will have a bone density test and possibly see an orthopedic specialist - there may be some bone thinning in one of my hips - to see if any further action is needed.
Since my last post, the muscle issues and related pain has gotten under control mostly, with a combination of medication, physio and massage. Unfortunately, last Canada Day weekend some stomach issues settled in, and by the holiday Monday I was in the emergency room as I was too weak from the three days of diarrhea. IV fluids, tests and 6 hours later I was able to leave and by Friday I was feeling a bit better and saw some friends. Even managed to do a locked/escape room (on my list of fun things to do!) with Tasha and her family - getting out with 30 seconds left!
So the past two weekends have been one thing or another - but at least the waiting weeks are done and I feel better now. Fingers crossed, for the next 2 weekends, I'll be heading to BC and then Saskatchewan to visit friends and family. Normal summer stuff. Normal is such an underrated word. Boring and uneventful also have that reputation - but I'd take all three forever ;)
Thanks again for all the thoughts, prayers and good energy - certainly helped me in the past few weeks. And as Stampede is in full swing - Yahoo!
Sunday 25 June 2017
Summer blooms
I'm sure all my Canadian friends and family would agree that summer days slip away so much faster than the winter ones. I just came inside from sitting on the deck with mom and dad after having dinner out there. Love that perfect air.
On the health front, I had my appointment with Dr. Stewart, the breast oncologist, last Monday. First on the task list from that visit was look at the rest of my body for possible metastases - bone scan and CT of chest, abdomen and pelvis. Both were scheduled quickly - one Thursday and one yesterday. Will review the results when I see Dr. Stewart again 2 weeks from tomorrow. From that appointment I also learned that the chemo I had post mastectomy surgery wouldn't have covered the brain as the blood-brain barrier would protect the brain from those chemicals. So likely the cells that caused the tumours in my brain have been around since before the mastectomy. Apparently they only see maybe 1 of those cases a year (rare is a 4-letter word sometimes). Doesn't change the plan forward but does answer some questions I had.
So some more waiting - 2 weeks for the "beyond the brain" picture and about 2.5 months for the brain picture. I had some new side effects creep up this past week - muscle spasms in back and neck - that impacted my sleep considerably. I now have another medication and a few other tricks to mitigate but it derailed my week a bit.
Outside of that, I was able to have a few more visits with some friends and family - including an awesome unexpected coffee with my cousin Sonia who was in town, an ice cream with Tasha and her family to celebrate her birthday, and watching Davis and Jack at one of each of their soccer and ball hockey games. I'm making some plans for the next 2.5 waiting months to get stronger mentally and physically and to live as fully as I can within energy (and budget!) constraints. My family continues to provide me with incredible care (and friendship) and the support, energy, thoughts and prayers from so many people constantly fuel me.
June 21 also came and went, marking 20 years from golf day 1997 when this whole cancer story started. Rather insane what has happened since then, and rather remarkable that I'm still alive and living life considering all of that. I received a beautiful flower delivery (above) on Friday - this year's golf day at PwC. 2 PwC partners sent it - Scott drove me to the hospital and Dave was in my golfing 5-some back in June 1997.
Beautiful flowers, beautiful people, beautiful life. Cheers. Tricia
On the health front, I had my appointment with Dr. Stewart, the breast oncologist, last Monday. First on the task list from that visit was look at the rest of my body for possible metastases - bone scan and CT of chest, abdomen and pelvis. Both were scheduled quickly - one Thursday and one yesterday. Will review the results when I see Dr. Stewart again 2 weeks from tomorrow. From that appointment I also learned that the chemo I had post mastectomy surgery wouldn't have covered the brain as the blood-brain barrier would protect the brain from those chemicals. So likely the cells that caused the tumours in my brain have been around since before the mastectomy. Apparently they only see maybe 1 of those cases a year (rare is a 4-letter word sometimes). Doesn't change the plan forward but does answer some questions I had.
So some more waiting - 2 weeks for the "beyond the brain" picture and about 2.5 months for the brain picture. I had some new side effects creep up this past week - muscle spasms in back and neck - that impacted my sleep considerably. I now have another medication and a few other tricks to mitigate but it derailed my week a bit.Outside of that, I was able to have a few more visits with some friends and family - including an awesome unexpected coffee with my cousin Sonia who was in town, an ice cream with Tasha and her family to celebrate her birthday, and watching Davis and Jack at one of each of their soccer and ball hockey games. I'm making some plans for the next 2.5 waiting months to get stronger mentally and physically and to live as fully as I can within energy (and budget!) constraints. My family continues to provide me with incredible care (and friendship) and the support, energy, thoughts and prayers from so many people constantly fuel me.
June 21 also came and went, marking 20 years from golf day 1997 when this whole cancer story started. Rather insane what has happened since then, and rather remarkable that I'm still alive and living life considering all of that. I received a beautiful flower delivery (above) on Friday - this year's golf day at PwC. 2 PwC partners sent it - Scott drove me to the hospital and Dave was in my golfing 5-some back in June 1997.
Beautiful flowers, beautiful people, beautiful life. Cheers. Tricia
Sunday 11 June 2017
Beyond the Brain
June 11. Tomorrow marks 9 years since my third transplant. (A shout out to Louise for the incredible June 12 customized congrats card!) Seems longer ago and yet like it was yesterday. And still it's not been 2 months since the latest book in my roller coaster series started. Time is so strange. Surreal.
Once again, the week has included progress and challenge of different forms. Continued improvement in my walking. No increase in intensity of headaches. Dr. Kelly was quite pleased with how my head has healed since surgery and my overall recovery from the surgery and radiosurgery. I got a copy of the pathology report - a bit daunting to read explicitly the nature of what was removed from my brain. Beyond the size, confirmation that the tumours are rather aggressive metastatic breast cancer, Until we see the MRI in late August, there is no certainty as to whether there are further metastases or if there are any more. For now, the plan for the brain is in wait mode.
Which means now the focus shifts to the "beyond the brain" reality. Metastatic means the breast cancer travelled outside of the breast, and while it screamed loud enough in the brain in April, it could have travelled anywhere else the blood runs. So a week tomorrow I have an appointment with my original breast oncologist Dr. Stewart, who led my post-mastectomy chemo treatment plan two years ago. I'll find out what will be done to assess the rest of my body for metastases and further related steps will be needed to treat and/or monitor.
In the interim, days evaporate. I am not challenged with what to do with my time - boredom is not a feeling that I am even close to enjoying yet. Between medical appointments, I perhaps have enough energy to schedule an occasional visit with a friend. A nap is required before and/or after. Getting dressed and assembling all my parts for the visit is also exhausting. Mom is still living with me 100% of the time - we rotate between my condo and mom and dad's house, and deal with related logistics like groceries and laundry for the 2 locations.
I want to again thank everyone for the continued waves of amazing support. It is incredible I am doing as well as I am coming out of this first phase of the fight. As my physical "brain" phase pauses, I now enter the uncertain "beyond the brain" phase. The reality is there is a lot of uncertainty. I also now have the capacity and challenge to try to process what has actually happened in the past 2 months. I really haven't had the chance to digest all of this. I've been in fight mode as things went so rapidly since April 15.
As my writing "The Black" (which I wrote at the end of March, BEFORE this diagnosis) suggests, I will reflect on how I managed to survive the past 2 months of quicksand, learn from it, and be ready for the next hit. I also need to figure out anything I really want to do and do it. Everything I spend my limited energy on will have to be only what is good for me and no one else. I have to respect that while I am holding my own, this fight is far from over.
Tricia
Friday 2 June 2017
New hair and some love from Fiji
Another week has passed and I continue to see improvement or decrease in some things I've been experiencing but an increase or no change in some others. Fatigue, headaches and nausea continue to be the main culprits, but I'm able to manage all with patience, sleep, Tylenol and Gravol. The good news is my balance has improved and I just stopped using my cane a couple days ago. The "Dex" effect on my mind continues to drop off, which has allowed me recently to actually "sleep" when I sleep, not "hover" as I was doing until this past week. People don't realize how lucky they are to actually sleep and dream.
I've had several medical appointments over the past week and no new issues coming out of those to deal with out of those. The next one is with Dr. Kelley, my brain surgeon, this Wednesday, so we'll see what he has to say. My head is looking really good given what it's been through, with the 30 staples and stitches almost totally healed. I also got a new wig - the brunette version of the blonde one I had that will be lighter for summer.
So physically I'd say on a net basis I'm improving - certainly being able to walk without a cane makes me feel a lot more normal. Mentally it's been probably net flat for the week - the upsides of sleep and walking have been countered by my mind filling in some of the gaps or memories I have of Unit 11 post-surgery. I'm writing about it - as some know a year ago I started on a body of written work and visuals (paintings/drawings) about life that I plan to share next June - 21/18 which will be 21 years on June 21 since diagnosis. So I've just added to those files in the past week or so to add my recent experiences. Because of both the impact of the Dex and the craniotomy, the 8 days post-surgery until discharge was the scariest time of my life (and as you know I have ICU and the butter experience to compare to) and I continue to work through all of it these days. As a friend who has survived head trauma recently said to me, "we really are our brains".
On a lighter note, I thought I'd share something crazy cool that happened in the last month and a half. Many of you know one of my passions is the Survivor series on TV and I've been in a "pool" with 3 friends for the past 28 seasons where we draft contestants etc. A few years ago my awesome cousin Brant got me and the three friends of mine tickets to the LIVE finale in Los Angeles and we had an incredible weekend in Hollywood to see it. About 2 days before I was discharged, when my mind was still challenging the reality of many things, my mom and dad showed me a video that Brant had sent, from Jeff Probst (yes, THAT Jeff), hoping to put a smile on my face. Check it out. Needless to say it was hard to imagine that it was real! A few weeks later when I sent Brant an email thanking him, he told me Jeff was following my blog and if could send some "vid" back he would pass it on to Jeff. Given my mental state, it's amazing that with mom's assistance I was able to create the "vid" in one take and get it into Dropbox to share back! Check it out. I still shake my head at his video - thanks again Brant!
Tonight I'll see Jack and Davis and we'll celebrate their upcoming June 4th 11th birthdays (!). I've had a couple visits with friends this week too, so starting slowly towards another new normal every day. My gratitude for everyone's energy and prayers becomes deeper and deeper as I understand or become aware of what has transpired over the past month and a half. Thank you just doesn't express how I feel.
Suck in the energy from the sun and enjoy the short summer us Canadians get. Cheers, Tricia
I've had several medical appointments over the past week and no new issues coming out of those to deal with out of those. The next one is with Dr. Kelley, my brain surgeon, this Wednesday, so we'll see what he has to say. My head is looking really good given what it's been through, with the 30 staples and stitches almost totally healed. I also got a new wig - the brunette version of the blonde one I had that will be lighter for summer.So physically I'd say on a net basis I'm improving - certainly being able to walk without a cane makes me feel a lot more normal. Mentally it's been probably net flat for the week - the upsides of sleep and walking have been countered by my mind filling in some of the gaps or memories I have of Unit 11 post-surgery. I'm writing about it - as some know a year ago I started on a body of written work and visuals (paintings/drawings) about life that I plan to share next June - 21/18 which will be 21 years on June 21 since diagnosis. So I've just added to those files in the past week or so to add my recent experiences. Because of both the impact of the Dex and the craniotomy, the 8 days post-surgery until discharge was the scariest time of my life (and as you know I have ICU and the butter experience to compare to) and I continue to work through all of it these days. As a friend who has survived head trauma recently said to me, "we really are our brains".
On a lighter note, I thought I'd share something crazy cool that happened in the last month and a half. Many of you know one of my passions is the Survivor series on TV and I've been in a "pool" with 3 friends for the past 28 seasons where we draft contestants etc. A few years ago my awesome cousin Brant got me and the three friends of mine tickets to the LIVE finale in Los Angeles and we had an incredible weekend in Hollywood to see it. About 2 days before I was discharged, when my mind was still challenging the reality of many things, my mom and dad showed me a video that Brant had sent, from Jeff Probst (yes, THAT Jeff), hoping to put a smile on my face. Check it out. Needless to say it was hard to imagine that it was real! A few weeks later when I sent Brant an email thanking him, he told me Jeff was following my blog and if could send some "vid" back he would pass it on to Jeff. Given my mental state, it's amazing that with mom's assistance I was able to create the "vid" in one take and get it into Dropbox to share back! Check it out. I still shake my head at his video - thanks again Brant!
Tonight I'll see Jack and Davis and we'll celebrate their upcoming June 4th 11th birthdays (!). I've had a couple visits with friends this week too, so starting slowly towards another new normal every day. My gratitude for everyone's energy and prayers becomes deeper and deeper as I understand or become aware of what has transpired over the past month and a half. Thank you just doesn't express how I feel.
Suck in the energy from the sun and enjoy the short summer us Canadians get. Cheers, Tricia
Thursday 25 May 2017
A good week and uncertainty
This week has been a good week overall. I had a wonderful birthday Sunday with a beautiful and delicious cake as you can see - Jack and Davis were away with their dad so it was Talyn, Tasha, Andrew and Mom and Dad. The next night mom, dad and I dined at the Keg near their place so that was also great.Tuesday I had my 5th radiosurgery appointment and also had an appointment with Dr. Voroney. I had expected to get another schedule of treatments and perhaps find out which of the 5 tumours (there were still remnants of the 2 larger ones that were surgical cut our a few weeks ago) had been treated. My hope was that he wasn't going so say the one near my brain stem was to difficult to treat or something similar.
I found out instead that every treatment had been hitting multiple tumours and that my treatment Wednesday was my last for now!
So next steps are that I will see Dr Kelly my surgeon in just over a week and then get an MRI late August and see Dr. Voroney shortly after to review and assess next steps. There is certainly the possibility that I will need to do more treatment or surgery depending on what the scan shows. And the risk of seizures or other neurological incidents remains. I can't drive for at least 3 months, and if I have a seizure that changes as well.
The coming weeks will likely be a bit harder physically than the last week has been - the benefit and the effect of radiosurgery is delayed, so headaches, nausea, and continued tiredness and balance issues are very likely. Mentally, it will be managing the uncertainty of how effective the surgery and treatments have been and what the 3 month scan will look like. I also may require some medication for headaches which may affect my brain. Still many unknowns.
After my treatment yesterday you can see me ringing the "last treatment" bell. I had rung one similarly after my last herceptin treatment for breast cancer in 2015. They didn't have such bells while I was doing treatment for leukemia. I rang it pretty loudly.
I continue to be overwhelmed by everyone's wishes, thoughts, prayers and energy. It has helped me tremendously while in hospital for the surgery and during the radiosurgery treatments. I will continue to lean into your bubble of energy as I navigate the next few months.
Cheers and love,
Tricia
Saturday 20 May 2017
Radiosurgery 101 and Happy May Long
I thought I'd do a post - just had a nap so should have enough energy for a short post.
Between Wednesday and yesterday, mom and I were up to the Tom Baker 3 times in the basement (radiation). I had four treatments. Prep was done last week. Some of you were asking about what the treatment feels like, so I thought I'd share what I can tell you. What it feels like during the treatment is easier to describe than what how the treatment actually works, and it is again different than how I feel post-treatment. How it works would require a physicist, radio oncologist and a few very smart technicians. And none of us would understand it ;)
When they call my name, they lead me into a room where I lay down on a thin mental board. At the end of a board is a base that was formed for my head last week. I get my head positioned into the base, and then they put a warm blanket on me. Then comes my mask, also made last week. It's made of something that reminds me of silly string from back in the 90s. But is is hard - not soft. They tell me we're about to start and then clamp the mask on my face. It's pretty tight, but luckily I've never been a tiny bit claustrophobic. Then all the technicians and physicists leave.
I also have an orange ring on my stomach - like you'd play fetch with a dog with - to hold do my hands don't slide. The machine will shut off if you move too much, so for the next half hour I start my strategies to keep calm and forget I'm getting treatment. It involves breathing, visualizing - often I swim with turtles and boogeybord in Maui. There's also the music - I've asked for Jazz - I used to play Jazz piano some will know. And I know that there will be roughly 7-10 sounds in the half hour so it's another way to measure where I'm at. I've actually thought a lot about my summer years ago pre-cancer at Jazz Camp in Saskatchewan where as someone who never played Jazz got placed with this group of talented guys who already played in a band together. It's crazy how your mind helps you when you need it. So between the music and the breathing and the visualization, I get through the 1/2 hour. I keep my eyes closed, but I can also feel that my little metal board moves, sometimes it rocks a bit back and forth, I hear some dinging sometimes and on the first day the people were also calling out various numbers - the physics part I think - during some of it. And then with my eyes closed I also see green and orange light pass by, and hear various different fans or something. They did tell mom that next week she can watch if she likes. If she can handle looking at me with the mask clamped on my face I'd love to know if my little board is moving or not.
Once they remove the mask, I pull myself up, find mom in the waiting room an head home. On the first day I had to do 2 and after the first they asked if I wanted a break and I didn't really so we did they second immediately. The machine has never stopped and after the first day they said I was a rockstar ;)
So that's what it feel like during treatment. I've got 2 more next week Tuesday and Wednesday and I also see Dr. Voroni, the radio oncologist who I saw last week before we did the mask, on Tuesday before treatment. I don't know if I have to more beyond Wednesday or not. I'm letting the experts deal with it.
Post treatment I feel tired. Very tired. Kind of heavy. I also threw up yesterday afterward but luckily mom got me the bucket in time :) So I mainly eat, sleep, drink lots of water and repeat. I've been sleeping mostly at my condo as it's so close to TBCC but sometimes mom and I head to mom and dads for a change of scenery.
Energy running out, so will sign off. Maybe too much detail but I'm a visual person so now you can imagine me as much as you want while you send all your incredible energy. Thanks again - it's helped me get through the first 4 and I'm not at all concerned about doing more of it. Gotta get it done.
Enjoy the May long weekend everyone! Love Tricia
Between Wednesday and yesterday, mom and I were up to the Tom Baker 3 times in the basement (radiation). I had four treatments. Prep was done last week. Some of you were asking about what the treatment feels like, so I thought I'd share what I can tell you. What it feels like during the treatment is easier to describe than what how the treatment actually works, and it is again different than how I feel post-treatment. How it works would require a physicist, radio oncologist and a few very smart technicians. And none of us would understand it ;)
When they call my name, they lead me into a room where I lay down on a thin mental board. At the end of a board is a base that was formed for my head last week. I get my head positioned into the base, and then they put a warm blanket on me. Then comes my mask, also made last week. It's made of something that reminds me of silly string from back in the 90s. But is is hard - not soft. They tell me we're about to start and then clamp the mask on my face. It's pretty tight, but luckily I've never been a tiny bit claustrophobic. Then all the technicians and physicists leave.
I also have an orange ring on my stomach - like you'd play fetch with a dog with - to hold do my hands don't slide. The machine will shut off if you move too much, so for the next half hour I start my strategies to keep calm and forget I'm getting treatment. It involves breathing, visualizing - often I swim with turtles and boogeybord in Maui. There's also the music - I've asked for Jazz - I used to play Jazz piano some will know. And I know that there will be roughly 7-10 sounds in the half hour so it's another way to measure where I'm at. I've actually thought a lot about my summer years ago pre-cancer at Jazz Camp in Saskatchewan where as someone who never played Jazz got placed with this group of talented guys who already played in a band together. It's crazy how your mind helps you when you need it. So between the music and the breathing and the visualization, I get through the 1/2 hour. I keep my eyes closed, but I can also feel that my little metal board moves, sometimes it rocks a bit back and forth, I hear some dinging sometimes and on the first day the people were also calling out various numbers - the physics part I think - during some of it. And then with my eyes closed I also see green and orange light pass by, and hear various different fans or something. They did tell mom that next week she can watch if she likes. If she can handle looking at me with the mask clamped on my face I'd love to know if my little board is moving or not.
Once they remove the mask, I pull myself up, find mom in the waiting room an head home. On the first day I had to do 2 and after the first they asked if I wanted a break and I didn't really so we did they second immediately. The machine has never stopped and after the first day they said I was a rockstar ;)
So that's what it feel like during treatment. I've got 2 more next week Tuesday and Wednesday and I also see Dr. Voroni, the radio oncologist who I saw last week before we did the mask, on Tuesday before treatment. I don't know if I have to more beyond Wednesday or not. I'm letting the experts deal with it.
Post treatment I feel tired. Very tired. Kind of heavy. I also threw up yesterday afterward but luckily mom got me the bucket in time :) So I mainly eat, sleep, drink lots of water and repeat. I've been sleeping mostly at my condo as it's so close to TBCC but sometimes mom and I head to mom and dads for a change of scenery.
Energy running out, so will sign off. Maybe too much detail but I'm a visual person so now you can imagine me as much as you want while you send all your incredible energy. Thanks again - it's helped me get through the first 4 and I'm not at all concerned about doing more of it. Gotta get it done.
Enjoy the May long weekend everyone! Love Tricia
Tuesday 16 May 2017
A quick pic
Just a quick hello to everyone as I will start radiosurgery treatment tomorrow and am really not sure what to expect or when I'll be able to post next. Since my last post I've gained strength and feel as ready as I can for the next stage. My incisions from surgery are healed so I popped in my hair, a little makeup and did a rare selfie. Steroid puffy face and all. Shared below for my amazing supporters. Thanks again to everyone for all the messages, food, love and support. If you can send some extra energy tomorrow that would be awesome.
Cheers
Tricia
Cheers
Tricia
Friday 12 May 2017
Risks and radiosurgery
Another crazy week for more reasons than I will explain. Health highlights include getting my staples and stitches removed, radiosurgery consult w Dr Voroni at TBCC, yet another incredible addition to my specialist team, getting a CT scan and mask made for treatment yesterday. Too complicated to explain but basically I will be doing a lot of radiosurgery or similar treatment that will hit all 5 spots in some way likely next week! Risks are present of course, including seizures and other new things. But as you know I've been navigating risks for a while. So I'm going to follow the lead of the specialists and all I will continue to ask you to do is send me energy, prayers and your love I am so grateful for. Fatigue is pretty significant right now, so virtual support continues to be the best for me to be honest. And while I do love everyone's picture of me being home and about, most of the day I eat, sleep, drink as much water as I can and repeat ;)
Tricia
Tricia
Thursday 4 May 2017
Bubble Of Love
It is beyond words that I can say I am home. Discharged from neuro; navigating at a slow but steady pace. Eating, drinking (water) and rediscovering the world which became very dark for a while. Someday I'll explain more. Or perhaps not. For now all I can say is life is incredible. As are all of you, my bubble of love and energy.
Sunday 30 April 2017
April Showers
We've had some busy days since
the last update with continued assessments, tests and the struggle to keep
all checks in balance. Tricia has had increasing physical activity which
has been great to see. She has gone from taking her first steps a couple
of days ago, to now walking a few laps around the ward. Her medical
team are always measuring fluid intake, watching drug interactions and of
course trying to ensure she gets enough rest.
As most of you who have ever been hospitalized know, achieving the resting state is very difficult. Tricia is a seasoned and experienced patient, but this recent stay has been very trying. Visitors are still not “what the doctor ordered” just yet, but we hope that should change once the routine slows down a bit.
Tomorrow starts a new week and a new month and we expect Tricia will have some sunnier days ahead.
As most of you who have ever been hospitalized know, achieving the resting state is very difficult. Tricia is a seasoned and experienced patient, but this recent stay has been very trying. Visitors are still not “what the doctor ordered” just yet, but we hope that should change once the routine slows down a bit.
Tomorrow starts a new week and a new month and we expect Tricia will have some sunnier days ahead.
Thursday 27 April 2017
Post Op Update
A few days have passed since the last post so I thought
it was time for a quick update to our friend and family supporters. Since
Tricia returned to the ward after her long surgery it has been difficult for
her. Her recovery will require a great deal of strength and courage on her
part. Tonight she is receiving a blood transfusion to replenish that lost in
surgery. The neurology team continues to be pleased with her postoperative
condition and progress which is comforting to hear.
Tasha, Lui, Brandon and I are sharing hospital time these
days with Tricia to provide extra eyes and ears. She has had difficulty getting
the rest that she needs for recovery and healing. Hopefully with the new blood
and needed rest her body have a chance to recover and strengthen.
We continue to be encouraged and moved by the love and
support from so many!
Marie
Wednesday 26 April 2017
Focus on Rest & Recovery
Our rockstar Tricia had a long surgery well into the late night and is now back in her ward where they can help her focus on recovery. She needs a lot of rest in the next few days so won't be able to have any visitors, but we will read your blog comments to her when she's up for it. Your continued positive thoughts & prayers are making a huge difference to her and us.
Tuesday 25 April 2017
Keep the Positive Thoughts Coming!
Just a quick update from Tasha.
Tricia was ready for surgery today. She couldn't eat or drink in case they called her up and she sent me a text saying "I don't care about starving just would love to do this today".
I just got word that she is on her way to the OR and she asked that I post this so you could all please continue to send your positive thoughts her way during the next several hours.
Once she's in recovery, I will provide anther update. We all thank you so much for your amazing support!
Tricia was ready for surgery today. She couldn't eat or drink in case they called her up and she sent me a text saying "I don't care about starving just would love to do this today".
I just got word that she is on her way to the OR and she asked that I post this so you could all please continue to send your positive thoughts her way during the next several hours.
Once she's in recovery, I will provide anther update. We all thank you so much for your amazing support!
Saturday 22 April 2017
Surreality of a week.
Waking in my room this morning there is some sun coming thorough the window. Similar to last Saturday morning but entirely different. It wasn't even a week ago I learned of the 5 tumours in my brain yet in many ways I feel like it's been a month. Life is so strange.
Before I run out of energy - update is that two of the large tumours in the cerebellum will be surgical removed after this weekend, likely Tuesday (timing is never 100%) Maybe a third smaller one that's close by. That will entail cutting into my skull to open it up, removing bone and tumours and then sewing various things back up. It's a craniotomy although your google searches will result in many inaccurate results ;) Approximately 4-8 hours depending on complications - infection, bleeding, stroke, spinal fluid leak age, death etc. Any such surgery involves risks - mine are slightly higher given my spotted past issues. Good news is the surgical, nursing, internal medical teams are all amazing so best we can do. I have one more consult with anesthesia and will be doing some pre-op medication switches for safety.
If all goes well recovery will be several weeks before they can then can do another scan and hit the remaining smaller tumours with focused radiosurgery or as I think if it as the snipers. The one closest to my brain stem is the most positionally a problem as so much goes on in that section.
In all my other fights w cancer I have used my brain extensively not only to stay positive but to actually fight and visualize the cancer leaving. Its different now - any rapid thoughts cause me stress that these foreign masses will shift grow or change before we can get to them. So I have been really trying to keep calm. The steroid medication seems to be managing swelling symptoms so I just have to pray that continues until surgery.
Virtual love, prayers, thoughts and support from everyone continues to be an indescribable bubble of energy keeping me going so I graciously ask for more in coming weeks as things get very scary for me. I will conserve my energy on individual responses but each drop of love I read is truly appreciated.
And please do something joyful this weekend, laugh extra hard, and appreciate the mundane.
T
Before I run out of energy - update is that two of the large tumours in the cerebellum will be surgical removed after this weekend, likely Tuesday (timing is never 100%) Maybe a third smaller one that's close by. That will entail cutting into my skull to open it up, removing bone and tumours and then sewing various things back up. It's a craniotomy although your google searches will result in many inaccurate results ;) Approximately 4-8 hours depending on complications - infection, bleeding, stroke, spinal fluid leak age, death etc. Any such surgery involves risks - mine are slightly higher given my spotted past issues. Good news is the surgical, nursing, internal medical teams are all amazing so best we can do. I have one more consult with anesthesia and will be doing some pre-op medication switches for safety.
If all goes well recovery will be several weeks before they can then can do another scan and hit the remaining smaller tumours with focused radiosurgery or as I think if it as the snipers. The one closest to my brain stem is the most positionally a problem as so much goes on in that section.
In all my other fights w cancer I have used my brain extensively not only to stay positive but to actually fight and visualize the cancer leaving. Its different now - any rapid thoughts cause me stress that these foreign masses will shift grow or change before we can get to them. So I have been really trying to keep calm. The steroid medication seems to be managing swelling symptoms so I just have to pray that continues until surgery.
Virtual love, prayers, thoughts and support from everyone continues to be an indescribable bubble of energy keeping me going so I graciously ask for more in coming weeks as things get very scary for me. I will conserve my energy on individual responses but each drop of love I read is truly appreciated.
And please do something joyful this weekend, laugh extra hard, and appreciate the mundane.
T
Wednesday 19 April 2017
A little ray of sunshine
Tricia enjoyed a bit of fresh air & sunshine out front of the hospital. Thanks again for all of your support! Tasha & Marie
Tuesday 18 April 2017
Planning the best path and Thanks
Last night and today I met my surgeon Dr. Kelly who reviewed my MRI scan in detail. 5 tumours - various places, various levels of challenges. The full team will review my file tomorrow and then propose a plan considering several factors. Also had a visit from Dr. Brown my lead transplant doc so all hands are on deck to determine the best path. Medication is continuing to help keep my symptoms stable giving time to properly consider options. My need to rest and keep my brain calm continues to be top priority so I appreciate your respecting that and providing such incredible virtual love and support instead.
Tasha and my mom will likely provide quick updates here going forward as I wind down my response efforts to conserve energy. Know that I am completely in awe and fuelled by your thoughts, prayers, comments and love regardless of whether you receive a response. Gracias, Danke, Merci, thank you, Grazie.
Love to all
Tricia
Tasha and my mom will likely provide quick updates here going forward as I wind down my response efforts to conserve energy. Know that I am completely in awe and fuelled by your thoughts, prayers, comments and love regardless of whether you receive a response. Gracias, Danke, Merci, thank you, Grazie.
Love to all
Tricia
Monday 17 April 2017
Surgery on hold
Quick update for ow. MRI yesterday has confirmed now four tumours. One is very large and complicated so several medical teams need to consult over what will be best the course of action. It seems that surgery won't be today or tomorrow until decisions are made. Continue to take medications for the swelling and get other consultations and rest in the meantime. Overwhelmed by the outpouring of support from all ends of the earth - please know how much I appreciate it. Stay tuned.
Tricia
Tricia
Sunday 16 April 2017
An unfair ask and the black
I would have written in this post about my awesome trip to Maui and the business of life non-health related for the past few months, because that's what it's been. But instead I am doing a very brief post to update you on yet another health development that I did not see coming.
I'd had some headaches that got worse in the last few days and after a call into our Health Link system, came into Emergency yesterday to get it checked and within a couple of hours found out that I have several tumors in my brain. I quickly was admitted to the Neurology Unit at Foothills and have had lots of tests since and will likely likely undergo 1-2 surgeries this week, the first likely happening tomorrow. I don't know much more and I'm just trying to process this myself as are my close family & friends and all of you will be doing that too now I'm sure.
At this point, I'm trying to get things organized because unlike the other four times I've gone through cancer, my mind has been one of my strongest assets and survival strategies, but I don't know what capacity I'll have to do that this time. Tasha has helped me do this posting and between her and mom they will try to provide quick updates here as the days unfold.
I know that this is a brief update and all I can unfairly ask is for you to continue doing what you've been doing for almost two decades, which is sending whatever you can send and have been sending - prayers, energy, support. I need to ask you not to try and visit at this point - I need to rest to put myself in the best position possible for the coming days. You can instead support virtually through the blog and messages if you like. It seems to have worked until now and I need it more than ever this time.
As I think I mentioned, I have been working on a body of work of paintings to try and share my experience with the rollercoaster and writings to go with them and I've made some progress, not knowing what lies ahead. I thought I would share something I wrote, ironically a couple of weeks ago, that I thought was important and articulates how I'm feeling now. Maybe some of you will relate in your own experiences and even in reading this, how you might be feeling now. I've pasted it below, it like all my other writings is in draft, but it seems like today we can't perfect the drafts before we share.
Much love and thanks,
Tricia
The Black
While I would agree with people who say that I am a positive person, and that my ability to stay positive has helped me overcome many challenges, I feel the need to articulate the depth of moments where it is impossible to be positive, or where I have felt simply too tired to live. Through the past 21 years I have felt that way - too tired to fight, too tired to live - many times. I share this because I believe it is a life reality that every person experiences, but we are encouraged to reject it, recover from it, change it, and most definitely not share it with others. Be strong. Think positively. Be grateful. And while that is so very true, actually respecting the worst minutes, hours, days of life - where we feel weakened, when we feel attacked, unable to go on, swallowed by the quicksand, gasping for air, blinded by the horror of whatever is devouring us - is the only way to improve at getting through those times. I used to believe or possibly hope that life was overall fair, that times of darkness would be equalled by times of light, that justice would be served - not necessarily immediately, but by the end that it in fact would balance out. I don’t believe this to be true any more. Life is not logical or fair. There are tornadoes, and sharks and tsunamis regardless of what you do or don’t do. And it is almost certain that we and those we love will be hurt multiple times, sometimes so badly that we almost don’t make it. It’s never safe to assume that we’ve had our fair share of those attacks, and expect them to eventually dissipate. I don’t think that’s how it works. It doesn’t make sense but that’s the point. I think shining the spotlight on the darkest moments, understanding in detail how we managed to get to the edge of the water we almost drowned in, how we didn’t bleed to death, how our heart managed to heal after being torn to pieces, makes us more capable of surviving the next hit. No matter how many times we are hit. And focusing on how black the black is makes the white extraordinarily more vibrant.
I'd had some headaches that got worse in the last few days and after a call into our Health Link system, came into Emergency yesterday to get it checked and within a couple of hours found out that I have several tumors in my brain. I quickly was admitted to the Neurology Unit at Foothills and have had lots of tests since and will likely likely undergo 1-2 surgeries this week, the first likely happening tomorrow. I don't know much more and I'm just trying to process this myself as are my close family & friends and all of you will be doing that too now I'm sure.
At this point, I'm trying to get things organized because unlike the other four times I've gone through cancer, my mind has been one of my strongest assets and survival strategies, but I don't know what capacity I'll have to do that this time. Tasha has helped me do this posting and between her and mom they will try to provide quick updates here as the days unfold.
I know that this is a brief update and all I can unfairly ask is for you to continue doing what you've been doing for almost two decades, which is sending whatever you can send and have been sending - prayers, energy, support. I need to ask you not to try and visit at this point - I need to rest to put myself in the best position possible for the coming days. You can instead support virtually through the blog and messages if you like. It seems to have worked until now and I need it more than ever this time.
As I think I mentioned, I have been working on a body of work of paintings to try and share my experience with the rollercoaster and writings to go with them and I've made some progress, not knowing what lies ahead. I thought I would share something I wrote, ironically a couple of weeks ago, that I thought was important and articulates how I'm feeling now. Maybe some of you will relate in your own experiences and even in reading this, how you might be feeling now. I've pasted it below, it like all my other writings is in draft, but it seems like today we can't perfect the drafts before we share.
Much love and thanks,
Tricia
The Black
While I would agree with people who say that I am a positive person, and that my ability to stay positive has helped me overcome many challenges, I feel the need to articulate the depth of moments where it is impossible to be positive, or where I have felt simply too tired to live. Through the past 21 years I have felt that way - too tired to fight, too tired to live - many times. I share this because I believe it is a life reality that every person experiences, but we are encouraged to reject it, recover from it, change it, and most definitely not share it with others. Be strong. Think positively. Be grateful. And while that is so very true, actually respecting the worst minutes, hours, days of life - where we feel weakened, when we feel attacked, unable to go on, swallowed by the quicksand, gasping for air, blinded by the horror of whatever is devouring us - is the only way to improve at getting through those times. I used to believe or possibly hope that life was overall fair, that times of darkness would be equalled by times of light, that justice would be served - not necessarily immediately, but by the end that it in fact would balance out. I don’t believe this to be true any more. Life is not logical or fair. There are tornadoes, and sharks and tsunamis regardless of what you do or don’t do. And it is almost certain that we and those we love will be hurt multiple times, sometimes so badly that we almost don’t make it. It’s never safe to assume that we’ve had our fair share of those attacks, and expect them to eventually dissipate. I don’t think that’s how it works. It doesn’t make sense but that’s the point. I think shining the spotlight on the darkest moments, understanding in detail how we managed to get to the edge of the water we almost drowned in, how we didn’t bleed to death, how our heart managed to heal after being torn to pieces, makes us more capable of surviving the next hit. No matter how many times we are hit. And focusing on how black the black is makes the white extraordinarily more vibrant.
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