It's been a tough week. After a very successful BC HopFest 2017 (if you don't know about that, check out BC Hop Co online and come next year!) it's time to recharge. I've taken time to sit and let me sore feet restore. I have started a knitting project and caught up on some shows. On Oct 3rd was my 4th Brainaversary. Sometimes it's hard to believe that it's been 4 years since our family started on the "brain journey". There are still journey's ahead of us. We just don't know exactly what they are. We are flying a bit blind right now.
This week has been tough for a variety of reasons. I'm tired of fighting to advocate for myself, sounds dumb to some, I feel like we've been fighting for a voice in the medical system for too long. I've got all the specialists and not one quarterback. So frustrating.
On Friday, it was super hard. I was in tears nearly all day. I'd been to the GP to deal with an odd pain in my belly (like that's new!!), a shooting pain that had been nagging me since my June surgery. Damn. It shot straight up to my shoulder and threw me into a panic about what it could be. The GP was concerned about it too. Spleen? Stomach? Believes it to be a Hematoma that had "let go" and has caused major issue in the surrounding area. Pain now is a constant reminder to slow down and be kind to myself.
I had already been reminded of that after I'd been referred to the BC Cancer Agency following my June surgery. News wasn't good on that mass and now the investigation was on for any other issues that there may be. Ovarian complications are now being looking at, just not fast enough!! Why is a "short term follow up" (as suggested by the radiologist from August) quickest in November?? Why can't I get in for an MRI in Abbotsford sooner for the follow-up that I need? What is so wrong with our system? Don't answer that, we all know!!!! Hence the bad day! I would love to be boring, for just one day!
I'm curtailing the things that cause stress as that helps with the excessive pain, or at least I'm able to deal with the pain easier when I'm not also dealing with stress.
I'm not allowed to give up, I'm not allowed to want to give up. I am allowed to not be ok!
Saturday, October 7, 2017
Monday, January 2, 2017
My One Little Word....
Happy New Year one and all!!! 🍾 
As 2016 came to a close, our winter operations company was extremely busy with snow plowing, salting/sanding and anti-icing. Both of our kids are now heavily involved in the operations and for some of the drivers who've been with us for 20years, they remember Sarah and Cam as babes. Our entire team has absolutely rocked an entire, unprecidented, month of operations. Fall went out like a dragon and winter entered, well, like a....you get it!
2016 was a year of renewal for our family. In so many ways and one day there may be a book explaining it all. If you want to know more, let's go out for dinner or drinks....its been interesting. Sarah graduated university in Toronto and moved home for a few months (she returns to TO on Jan 6th to resume life). Cam graduated high school but had finished early and scored a dream job restoring vintage vehicles and building hot rods. He's just finished his level 1 RedSeal in mechanics at UFV.
Dwayne transitioned fully and beautifully into the life of hop farming but more than that being the expert in the field (no pun intended!). He is sought out for speeches and events for his knowledge and business savvy. Our hop processing plant finished in time for harvest and it was amazing to see the product it produced. It's the most advanced plant in Canada and we are very proud of it!! I am still sorting out who I am now that I'm not a stay-at-home-mum. It's a title I held for 20years...now what?
Each year, for the last few, I haven't made resolutions I've chosen a word. One little word, to help guide my year. Last year was JOY. To find joy in everything or anything was simple but not always easy depending on the day.
So for the last month I've gone through my list of possible words. I've literally tried each out and kept coming back to one that seriously spoke to me. While it can be construed as selfish, it's also very generous and kind. My word for this year is MORE. More love to give, more learning, more growth, more smiles to share, more joy, more happiness, more time with friends, more healthly choices, more hugs....you get the picture. Every time I turned around there was the word. MORE.
I hope you choose a word for this year. I hope more than ever that you find everything you are needing in 2017 and that you are loved more than you thought possible.
Looking forward to connecting with more of you this year!
Much love,
Di
xx
Friday, September 9, 2016
Kidney Surgery - Introducing Kyle w/Guest Blogger
Well today was the day. Exactly 3 years to the day that we broke the news to our kids that Diane had a brain tumor, she spent the day once again under the knife exploring a strange growth.
Diane started to complain of significant internal pain about 6 months ago. After much back and forth, and several specialists, we were settled in with a terrific young kidney specialist Dr. Neville. The good doctor pronounced that he was willing to do the surgery required to remove the mass that was about 9 cm in diameter - a softball sized affair.
Is it cancer? "We won't know until we take it out. We don't want to take a sample and deflate or drain it without being able to control that." Seemed reasonable. The plan was to wait for a date when both Dr. N and his preferred assist Dr. Y could make it work. Today was that day.
The day could not come soon enough. The big C hangs in the air as we drive into the hospital today. Her good friend Kristin died 2 years ago, shortly after being diagnosed with kidney cancer - was this that? Time would tell the story. We could only hang on for the ride.
Sarah joined me as we helped Diane settle into her gown and receive her intravenous stent. Only 3 attempts to make it work, better than the last time. (Diane has difficult to locate veins). We left the hospital about 11:30 am, expecting a 90 minute to 3 hour affair per Dr. N's pre-surgery briefing. He would call us once the surgery was complete.
We grabbed some lunch, and then headed back home to wait out the surgery. I have a few things going on at work, so I was able to be distracted for a while, but once 3 hours passed, I could not focus on much. Then 4 hours. Calls to the hospital to check on Diane only told us that she was not in recovery yet. Then 5 hours. I am no Dr, but a best case 90 min surgery is no longer best case 5 hours in methinks. As we approached the 6 hour mark Cam called to say that Diane was out of surgery and into recovery. Say what? "How do you know?" I fairly blurted out. "I called the front desk, put on my best little boy voice, and asked about my Mommy." Privacy policies be dammed, this kid wanted to know what was up with his Mama and no nurse could hold back that information. Good work Cam.
Come see her about 7:30 was the word, 8 hours since we last saw her. We arrived in the room to a rather chipper Diane! What a pleasant surprise. Post brain surgery she was virtually unable to communicate. This one left her in pain, but well colored and able to talk coherently. But what happened? How many kidneys do you have? Everyone with 2 kidneys put up your hand! She did not. Her understanding was that she was left with 1 and about 3/4 of a kidney, and that the mass had not been removed. Pardon the f^&* what? They left it in?? No more morphine for her nurse, she is clearly off her rocker.
Further discussions were fairly pointless as she did not have clear details. Where is Dr. N? An hour later, guess who walked in. Dr. N - he apologized for not reaching out to me, but there was an emergency and he had been taken away to deal with it. No problem, who am I to be pissed at this skilled surgeon. Thanks for taking care of my love. Now what about this "left it in" bullshit? It's true. Turns out old foggy head had it mostly right.
One of the things that caused a long delay in diagnosis and ultimately surgery was that none of the Doctors could not quite figure out what they were looking at on the scans. When Dr. N opened up Diane he found that the mass was in fact adhered to her kidney, but it was simply stuck there, it did not originate there. NO KIDNEY CANCER. That is the good news on the day. He was able to save 100% of the kidney. Awesome. He cleared it from the kidney, cleared it from other areas, but then ran up against the large bowel. Near the colon this sucker, we will call it Kyle, seemed to be adhered and perhaps originating from the bowel. Or not. To remove it would have resulted in a complicated surgery that they were not set up for, plus she had been down for a long time at this point. Kyle has a solid "rind" on him, and while they did rule out that it was the remnants of Diane's twin that she absorbed in utero (I asked, and apparently the teeth would have shown up on a scan) they still do not know what Kyle is. "You see something like this maybe once in 5 or 10 years" says Dr. N. We are dealing with an episode of House it would seem.
So here we are. Not kidney cancer, likely not a cancer (need 2 weeks for results to come back) and certainly not resolved. This short clip clearly articulates my thoughts on the situation with Kyle. https://www.youtube.com/watch?v=j_26iZl53YY
Thanks for caring enough to read this. Diane will be back to keep you updated as we watch for Round 2 of WTF is up with Kyle.
God Bless
Dwayne
Diane started to complain of significant internal pain about 6 months ago. After much back and forth, and several specialists, we were settled in with a terrific young kidney specialist Dr. Neville. The good doctor pronounced that he was willing to do the surgery required to remove the mass that was about 9 cm in diameter - a softball sized affair.
Is it cancer? "We won't know until we take it out. We don't want to take a sample and deflate or drain it without being able to control that." Seemed reasonable. The plan was to wait for a date when both Dr. N and his preferred assist Dr. Y could make it work. Today was that day.
The day could not come soon enough. The big C hangs in the air as we drive into the hospital today. Her good friend Kristin died 2 years ago, shortly after being diagnosed with kidney cancer - was this that? Time would tell the story. We could only hang on for the ride.
Sarah joined me as we helped Diane settle into her gown and receive her intravenous stent. Only 3 attempts to make it work, better than the last time. (Diane has difficult to locate veins). We left the hospital about 11:30 am, expecting a 90 minute to 3 hour affair per Dr. N's pre-surgery briefing. He would call us once the surgery was complete.
We grabbed some lunch, and then headed back home to wait out the surgery. I have a few things going on at work, so I was able to be distracted for a while, but once 3 hours passed, I could not focus on much. Then 4 hours. Calls to the hospital to check on Diane only told us that she was not in recovery yet. Then 5 hours. I am no Dr, but a best case 90 min surgery is no longer best case 5 hours in methinks. As we approached the 6 hour mark Cam called to say that Diane was out of surgery and into recovery. Say what? "How do you know?" I fairly blurted out. "I called the front desk, put on my best little boy voice, and asked about my Mommy." Privacy policies be dammed, this kid wanted to know what was up with his Mama and no nurse could hold back that information. Good work Cam.
Come see her about 7:30 was the word, 8 hours since we last saw her. We arrived in the room to a rather chipper Diane! What a pleasant surprise. Post brain surgery she was virtually unable to communicate. This one left her in pain, but well colored and able to talk coherently. But what happened? How many kidneys do you have? Everyone with 2 kidneys put up your hand! She did not. Her understanding was that she was left with 1 and about 3/4 of a kidney, and that the mass had not been removed. Pardon the f^&* what? They left it in?? No more morphine for her nurse, she is clearly off her rocker.
Further discussions were fairly pointless as she did not have clear details. Where is Dr. N? An hour later, guess who walked in. Dr. N - he apologized for not reaching out to me, but there was an emergency and he had been taken away to deal with it. No problem, who am I to be pissed at this skilled surgeon. Thanks for taking care of my love. Now what about this "left it in" bullshit? It's true. Turns out old foggy head had it mostly right.
One of the things that caused a long delay in diagnosis and ultimately surgery was that none of the Doctors could not quite figure out what they were looking at on the scans. When Dr. N opened up Diane he found that the mass was in fact adhered to her kidney, but it was simply stuck there, it did not originate there. NO KIDNEY CANCER. That is the good news on the day. He was able to save 100% of the kidney. Awesome. He cleared it from the kidney, cleared it from other areas, but then ran up against the large bowel. Near the colon this sucker, we will call it Kyle, seemed to be adhered and perhaps originating from the bowel. Or not. To remove it would have resulted in a complicated surgery that they were not set up for, plus she had been down for a long time at this point. Kyle has a solid "rind" on him, and while they did rule out that it was the remnants of Diane's twin that she absorbed in utero (I asked, and apparently the teeth would have shown up on a scan) they still do not know what Kyle is. "You see something like this maybe once in 5 or 10 years" says Dr. N. We are dealing with an episode of House it would seem.
So here we are. Not kidney cancer, likely not a cancer (need 2 weeks for results to come back) and certainly not resolved. This short clip clearly articulates my thoughts on the situation with Kyle. https://www.youtube.com/watch?v=j_26iZl53YY
Thanks for caring enough to read this. Diane will be back to keep you updated as we watch for Round 2 of WTF is up with Kyle.
God Bless
Dwayne
Tuesday, August 23, 2016
So there's this~~
Following along my path of too much information and informing my friends about what's going on, here it is.
This has taken us some time to get answers on. What we thought was gallstone issues turned out to be...ta-da...a kidney growth. At just over 9cm (same size as my kidney) it's a good sized grapefruit. Apparently I have a thing for citrus fruit 😁. While it's connected to both my kidney and bowel, it originates from my kidney. It's got a 60% chance of being malignant, so on Sept 9th I'm having it removed along with a small portion of my left kidney. My urologist from ARH along with a urologist from RCH will work on making my kidney functional. If they can't make my kidney work then they'll take it out. I am hoping that the pain associated with this disappears fairly quickly. Dwayne is sweet and kind and worried and wants to just fix me. If you know him, or either of our kids, please lift them up, love them, reach out. This is stretching us.
Love you all,
Di
xo
Monday, August 15, 2016
Family
Also this month , Cam registered for university. How is it possible that he is old enough to do that, or we are old enough to have children who've gotten to this place in life? Cam has registered for his level 1 RedSeal Mechanic. He continues to work at BA Customs where he restores vintage vehicles and builds custom hotrods. He literally has the dream job!!!
We attended Sarah's final show, Footloose, and graduation in TO last on Aug 6/7th. Cam and I arrived on the 3rd and we were tourists! We walked and toured, did the hop-on-hop-off buses. Aquarium and Kensington market, Dwayne arrived late on the 5th and we started the morning of the 6th with the CN tower. What a view!!! Dwayne and Cam hit up the one day only Import Fest Car Show and loved the new cars (and women draped over the cars 🙄).
After seeing Sarahs show and celebrating her graduation, Dwayne departed for home early on the 8th and Cam left for a trip with his paternal grandparents to NYC. Sarah and I jumped into moving mode and packed her apartment, loaded it onto a cube van and drove it to a storage unit. So, I've driven a cube can in DT Toronto!!! I can do anything!! We packed her clothing into suitcases and left for Abby the following morning.
What a whirlwind!
We are so proud of both of our kids for where they are and what their passions are. Always follow your dreams!!!
Mucho love,
Me
xo
Friday, March 11, 2016
Old Self vs New Self
It's a tough position to be in. The "old me" an outgoing, crazy, energetic, (kinda) in your face person. I'd be the first one to welcome a person or stick out my hand to say hello. I was the do'er. You need that done? Sure, I'll do it! I could plan parties and run committees and run a business and a household and still be sane at the end of the day. Ok, who am I kidding, I've never truly been sane :)
When people ask me if it's nice to be back to my "old me", I pause. I'm actually not. As much as I look like I am, and most of the time act like I am, so many things have changed.
The "new me" is cautious, apprehensive, more sensitive and careful. The "new me" is also still giving and a do'er. I'm aware that I don't go at the old speed but I really want to and I'm ok with it, most of the time. Don't feel sorry for me though, just please have patience if you see me struggling with anxiety or words.
I've been encouraged to get out into the community and do things again. As I was arriving at a small event one evening, I called Dwayne and cried. I sat in the parking lot filled with anxiety about walking into the building. Turned out, I was late and when I walked in the speaker had already started. Kind of mixed blessings. No visiting and small talk, something I'm not good at anymore. I panicked and then my friend saw me and shuffled me to the back to a chair. It was good.
Why the tears? I have no clue. I sat by myself and enjoyed the evening.
When people ask me if it's nice to be back to my "old me", I pause. I'm actually not. As much as I look like I am, and most of the time act like I am, so many things have changed.
The "new me" is cautious, apprehensive, more sensitive and careful. The "new me" is also still giving and a do'er. I'm aware that I don't go at the old speed but I really want to and I'm ok with it, most of the time. Don't feel sorry for me though, just please have patience if you see me struggling with anxiety or words.
I've been encouraged to get out into the community and do things again. As I was arriving at a small event one evening, I called Dwayne and cried. I sat in the parking lot filled with anxiety about walking into the building. Turned out, I was late and when I walked in the speaker had already started. Kind of mixed blessings. No visiting and small talk, something I'm not good at anymore. I panicked and then my friend saw me and shuffled me to the back to a chair. It was good.
Why the tears? I have no clue. I sat by myself and enjoyed the evening.
So now, I'm taking on new things to learn. Expanding my neuro receptors.
Painting. I didn't know I could paint!
Bee keeping. I'm loving learning about bees and look forward to getting my own hives next spring.
More knitting. Helping with BC Hop Co and BeerBQ. And napping :)
Also, I'll do an update next week with some interesting health stuff going on. It's shit. Specialist appointment on Tuesday.
Love love,
Di
xo
Results...
The news!
On Feb 25th I had an MRI, a usual follow-up. Some of my instagram followers saw my before and after photos, complete with my facial flush from the Ativan. I am very claustrophobic and really would love to be put out fully for the MRI but I'll take any drugs I can to help :)
On March 9th, I saw Dr Matishak (neurosurgeon) for my results. As we went through the slides of my brain one by one, with contrast and without. We were pleasantly surprised.....my brain is practically PERFECT!!!
About 8 months ago, I had a small node that he was watching along with thickened scar tissue. The nodule is GONE! Like completely. There is still thickening scar tissue but that is to expected, as someone went in with a scalpel and a bone saw! There's a shadow of the edema that was present and I'm not sure what that's about. We were completely amazed! Thanked the Dr and were told to see him in a year. By the time we got to the elevator, I was still in shock and Dwayne had tears in his eyes. Finally....we can breathe!! Something we truly haven't been able to do since that fateful day in Aug 2013.
We called Sarah and told her, Dwayne and she joked that while physically my brain may look fine, the level of crazy is still very high :) My sister has confirmed that it's hereditary! (tied with a bow and handed down from our Mother)
Brain stuff is so difficult to deal with. It's like a puzzle, and I seem to be missing some pieces! My brain injury support group is very helpful in keeping me from spiralling into "I'm an idiot" "I should be able to do this" "Why can't I remember that_____(insert thing/person etc)"
These days I'm taking art therapy on Tuesdays where I'm learning to paint. My Dad is an amazing painter, but it's not something I've ever learned. When I'm done my painting next week, maybe I'll share it.
Thank you for loving me, for loving us!!
xoxo
On Feb 25th I had an MRI, a usual follow-up. Some of my instagram followers saw my before and after photos, complete with my facial flush from the Ativan. I am very claustrophobic and really would love to be put out fully for the MRI but I'll take any drugs I can to help :)
On March 9th, I saw Dr Matishak (neurosurgeon) for my results. As we went through the slides of my brain one by one, with contrast and without. We were pleasantly surprised.....my brain is practically PERFECT!!!
About 8 months ago, I had a small node that he was watching along with thickened scar tissue. The nodule is GONE! Like completely. There is still thickening scar tissue but that is to expected, as someone went in with a scalpel and a bone saw! There's a shadow of the edema that was present and I'm not sure what that's about. We were completely amazed! Thanked the Dr and were told to see him in a year. By the time we got to the elevator, I was still in shock and Dwayne had tears in his eyes. Finally....we can breathe!! Something we truly haven't been able to do since that fateful day in Aug 2013.
We called Sarah and told her, Dwayne and she joked that while physically my brain may look fine, the level of crazy is still very high :) My sister has confirmed that it's hereditary! (tied with a bow and handed down from our Mother)
Brain stuff is so difficult to deal with. It's like a puzzle, and I seem to be missing some pieces! My brain injury support group is very helpful in keeping me from spiralling into "I'm an idiot" "I should be able to do this" "Why can't I remember that_____(insert thing/person etc)"
These days I'm taking art therapy on Tuesdays where I'm learning to paint. My Dad is an amazing painter, but it's not something I've ever learned. When I'm done my painting next week, maybe I'll share it.
Thank you for loving me, for loving us!!
xoxo
Subscribe to:
Posts (Atom)