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
Monday, 28 August 2017
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 |
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