A Particular Set of Skills, Honesty, and Appointment Updates
Pre July 15, 2017, I've never even had a primary care physician. I don't get sick and if I did I would just run to the local clinic or family medical center - but I wouldn't say I had a primary care physician. Just a phone number for when things got stuffy, itchy, or maybe I needed to shake a cold.
Let's be real - I have an almost two year old and a four year old so I've had a headache or two but Tylenol solves all those ills when bed time doesn't. I live in Austin so Zyrtec is necessary on occasion when cedar or ragweed hits but that's about it. So this is a new experience for me. My doctors have multiple people scheduling appointments for them; I have a pill box (and I have to take the pills!), so things are different now and will continue to be for a loooooong time. That's cool - I'll adapt.
So, enter a world of scheduling doctor appointments with multiple facilities as we try to figure out the who and where of my treatment and debulking. We're in Austin tonight but suddenly I'm needed in Houston by 8 am tomorrow, all while staying on top of work and kids. I'm pulling on every skill I have as a project manager to cover logistics and I've never been more confident in my abilities to do my job - but this is an overextension for sure - and I'm oddly excited about it. Scheduling is fun, planning and outlining dependencies and figuring out logistics...BOOM! What's next? Bring it.
Oh. Waiting. Waiting is next. <expletive> Yeah, not so good at that. And that's where parenting skills have been a little helpful. You can't rush a Connor or a Warren; can't make them eat dinner; can't, can't, can't, can't. I've tried and it's not something I want to do. And I read mommy blogs and inspiring mom quotes that just tell you to find some way to enjoy it. You know - find a positive, try to make it a game, etc. Yes, I am totally laughing at that naivety but it's also kinda true. So, I'll use those skills to get better at waiting.
As my mother-in-law remarked to my mom last week - I'm extremely organized and prepared. I honestly think it was her really nice way of calling me slightly neurotic and making it a compliment. AND I TAKE IT because I know I'm obsessive. It's a feature (software joke).
It's another one of those red twine moments - I'm uniquely qualified to handle this situation and it's probably contributing to me taking this all in stride as best I can. I have years of rolling with the punches and using the information at hand to make the best and most informed decisions I can. I'm lucky. Who better than a multi-tasking mom of 2 kids under 4 who really DOES think she can do it all?
As far as appointments from this week - I have several updates!
I asked about rapid deterioration - is that something I should be concerned with? All indications say no which was a HUGE load off my stress levels.
My biggest risk is having another seizure - but so far I'm responding to the meds so that's not a terribly large concern to them. If I have another I'd likely go to the hospital and meds would be adjusted. If I feel numbness on the side of my face or my hands start twitching - call them and they can adjust my meds over the phone.
They told us that this tumor is going to be unusual and that's a good thing for me. There are over 140+ types of brain cancer. We don't know what type I have - we want to get the tumor de-bulked and then use the actual large portion of the tumor to get the detailed genetic markers to dictate and drive the treatment plan.
He confirmed that the way I've been compartmentalizing the "phases" of this is a good and accurate method of getting from one thing to the next.
I talked with him about some of the concerns I had with our research of Austin area tumor removal. He listened to me and after we frankly discussed my Friday meeting at MD Anderson with their neuro-oncology team he told me to go get my tumor removed at MD Anderson - I can't do better. I can't get better treatment and I'll be in great hands. That solidified the decision for us. MD Anderson for tumor removal.
As for future phases, we don't have to make decisions RIGHT NOW about that. Just get through the things, get the teams of people the MOST information they need to make the best informed decisions, and THEN make the next round of decisions. SO. LOGICAL. Right brain happy (that was a pun).
The consultation went swimmingly and I absolutely loved her. We talked about how removing the tumor is going to be the best next step - which every doctor and conversation we've had since my biopsy has indicated.
It's now all about scheduling. We know that we need to do another round of MRIs before the surgery to get a specific series of images to help her plan the debulking. She also reconfirmed no speech impacts once we remove the tumor, and we all remain very confident that there would be no motor or physical impacts as well. We're going to include a "functional MRI" as well so we can essentially map out in my brain where certain activities are occurring to establish any "no-go" (my term not hers) areas for removal. The plan is to visually establish the boundaries of acceptable removal with the goal of removing at least 78% of the tumor.
She compared it to an octopus with microscopic tentacles. Our goal is to cut the head off the beast and get as many of those tentacles as possible because there's no such thing as 100%. She mentioned a few spots that we absolutely cannot get and that's where the tumor crosses the midline and goes into the left side of my brain - meaning there WILL still be some in there for "Phase 2" to take care of. This is not new news and it's not shocking but it's the "bad news" part of the day.
The coolest part to me is that we're going to be scheduling a surgical room at the hospital which has an MRI machine IN THE ROOM so as she implements her removal plan, they can do scans to identify if there are additional portions that we can continue to remove to increase the percentage of tumor removal.
At work we use a program called "Slack" to silo our client and internal communications. Since I'm an administrator and it was pretty obvious that we were about to have some major shifts in our work life, I created a channel which has gone through some naming rounds. We ultimately all settled on naming the tumor "Damien" and he's a "tooma" (said a la Schwarzenegger - but in this case it IS a tooma).
After this amazing consultation Erin and I briefly chatted and have casually retitled my neuro-surgeon "The Tooma Remoova." I honestly think my new doctor will be thrilled with her new title and can't wait to tell her about her new business cards. I wonder if I should design her some...
So, it's been a few days of whirlwind doctor appointments and more interpretations and conversations but it's all been pretty wonderful news.
There's a lot of ground to cover, but there's so much hope and positivity in my life right now that I'm not feeling sad or depressed. If anything, I've been uplifted and my priorities have been clearly aligned and I hope that the way that I feel today is the way I feel for the next 50 years of my life - because that's MY goal. I want to wake up every single day, energized and ready for my feet to hit the ground. I want to smile and laugh and spread this amazing feeling of joy and happiness with every person I encounter.
So, today, I leave you with this - YOUR job tomorrow morning is to get out of bed when the alarm goes off. Smile, stretch, hug your life partner/best friend/roommate/husband - whatever and whoever you love most in the world and tell them how much you love them and mean it with everything you have. That's all I ask - do that and you're doing ME a favor.
Now, I'm going to bed. Goodnight!
Let's be real - I have an almost two year old and a four year old so I've had a headache or two but Tylenol solves all those ills when bed time doesn't. I live in Austin so Zyrtec is necessary on occasion when cedar or ragweed hits but that's about it. So this is a new experience for me. My doctors have multiple people scheduling appointments for them; I have a pill box (and I have to take the pills!), so things are different now and will continue to be for a loooooong time. That's cool - I'll adapt.
So, enter a world of scheduling doctor appointments with multiple facilities as we try to figure out the who and where of my treatment and debulking. We're in Austin tonight but suddenly I'm needed in Houston by 8 am tomorrow, all while staying on top of work and kids. I'm pulling on every skill I have as a project manager to cover logistics and I've never been more confident in my abilities to do my job - but this is an overextension for sure - and I'm oddly excited about it. Scheduling is fun, planning and outlining dependencies and figuring out logistics...BOOM! What's next? Bring it.
Oh. Waiting. Waiting is next. <expletive> Yeah, not so good at that. And that's where parenting skills have been a little helpful. You can't rush a Connor or a Warren; can't make them eat dinner; can't, can't, can't, can't. I've tried and it's not something I want to do. And I read mommy blogs and inspiring mom quotes that just tell you to find some way to enjoy it. You know - find a positive, try to make it a game, etc. Yes, I am totally laughing at that naivety but it's also kinda true. So, I'll use those skills to get better at waiting.
As my mother-in-law remarked to my mom last week - I'm extremely organized and prepared. I honestly think it was her really nice way of calling me slightly neurotic and making it a compliment. AND I TAKE IT because I know I'm obsessive. It's a feature (software joke).
It's another one of those red twine moments - I'm uniquely qualified to handle this situation and it's probably contributing to me taking this all in stride as best I can. I have years of rolling with the punches and using the information at hand to make the best and most informed decisions I can. I'm lucky. Who better than a multi-tasking mom of 2 kids under 4 who really DOES think she can do it all?
As far as appointments from this week - I have several updates!
We met with Texas Oncology on Monday to meet the top Neuro-Oncologist as a potential local option.
This was a great meeting which filled us with a lot of hope. We learned some new information about potential risks and things to watch for. For example, I'm at risk of blood clots in my legs - it's a brain tumor related thing. So, watch for swelling in my legs. If I start to feel weird, I should call them.I asked about rapid deterioration - is that something I should be concerned with? All indications say no which was a HUGE load off my stress levels.
My biggest risk is having another seizure - but so far I'm responding to the meds so that's not a terribly large concern to them. If I have another I'd likely go to the hospital and meds would be adjusted. If I feel numbness on the side of my face or my hands start twitching - call them and they can adjust my meds over the phone.
They told us that this tumor is going to be unusual and that's a good thing for me. There are over 140+ types of brain cancer. We don't know what type I have - we want to get the tumor de-bulked and then use the actual large portion of the tumor to get the detailed genetic markers to dictate and drive the treatment plan.
He confirmed that the way I've been compartmentalizing the "phases" of this is a good and accurate method of getting from one thing to the next.
- Phase 1: debulk as much of the tumor as possible; the less that remains the better.
- Phase 2: wait for results (~2-3 weeks) and establish highly specialized and specific treatment courses; pick a neuro-oncologist and begin treatments
- Phase 3: Every 2 months get an MRI to see how things are progressing with tumor growth (or non-growth - fingers crossed) and make course corrections - for the rest of my life.
I talked with him about some of the concerns I had with our research of Austin area tumor removal. He listened to me and after we frankly discussed my Friday meeting at MD Anderson with their neuro-oncology team he told me to go get my tumor removed at MD Anderson - I can't do better. I can't get better treatment and I'll be in great hands. That solidified the decision for us. MD Anderson for tumor removal.
As for future phases, we don't have to make decisions RIGHT NOW about that. Just get through the things, get the teams of people the MOST information they need to make the best informed decisions, and THEN make the next round of decisions. SO. LOGICAL. Right brain happy (that was a pun).
Neuro-surgeon consult at MD Anderson
Early Monday morning I worked with the schedulers at MD Anderson to get me an 8 am appointment for Tuesday morning with the neurosurgeon familiar with my case. We decided logistically that it made a ton of sense to for us to wait for Jeff to get off work, talk with him about the morning appointment and just game plan. Dad would drive us to Houston, we'd sleep a bit, and then hit the Houston traffic for our meeting. All went according to plan and we made it to Houston in the wee hours.The consultation went swimmingly and I absolutely loved her. We talked about how removing the tumor is going to be the best next step - which every doctor and conversation we've had since my biopsy has indicated.
It's now all about scheduling. We know that we need to do another round of MRIs before the surgery to get a specific series of images to help her plan the debulking. She also reconfirmed no speech impacts once we remove the tumor, and we all remain very confident that there would be no motor or physical impacts as well. We're going to include a "functional MRI" as well so we can essentially map out in my brain where certain activities are occurring to establish any "no-go" (my term not hers) areas for removal. The plan is to visually establish the boundaries of acceptable removal with the goal of removing at least 78% of the tumor.
She compared it to an octopus with microscopic tentacles. Our goal is to cut the head off the beast and get as many of those tentacles as possible because there's no such thing as 100%. She mentioned a few spots that we absolutely cannot get and that's where the tumor crosses the midline and goes into the left side of my brain - meaning there WILL still be some in there for "Phase 2" to take care of. This is not new news and it's not shocking but it's the "bad news" part of the day.
The coolest part to me is that we're going to be scheduling a surgical room at the hospital which has an MRI machine IN THE ROOM so as she implements her removal plan, they can do scans to identify if there are additional portions that we can continue to remove to increase the percentage of tumor removal.
At work we use a program called "Slack" to silo our client and internal communications. Since I'm an administrator and it was pretty obvious that we were about to have some major shifts in our work life, I created a channel which has gone through some naming rounds. We ultimately all settled on naming the tumor "Damien" and he's a "tooma" (said a la Schwarzenegger - but in this case it IS a tooma).
After this amazing consultation Erin and I briefly chatted and have casually retitled my neuro-surgeon "The Tooma Remoova." I honestly think my new doctor will be thrilled with her new title and can't wait to tell her about her new business cards. I wonder if I should design her some...
So, it's been a few days of whirlwind doctor appointments and more interpretations and conversations but it's all been pretty wonderful news.
There's a lot of ground to cover, but there's so much hope and positivity in my life right now that I'm not feeling sad or depressed. If anything, I've been uplifted and my priorities have been clearly aligned and I hope that the way that I feel today is the way I feel for the next 50 years of my life - because that's MY goal. I want to wake up every single day, energized and ready for my feet to hit the ground. I want to smile and laugh and spread this amazing feeling of joy and happiness with every person I encounter.
So, today, I leave you with this - YOUR job tomorrow morning is to get out of bed when the alarm goes off. Smile, stretch, hug your life partner/best friend/roommate/husband - whatever and whoever you love most in the world and tell them how much you love them and mean it with everything you have. That's all I ask - do that and you're doing ME a favor.
Now, I'm going to bed. Goodnight!
I love you Hanna Munsterman O'Brien. Good night...sleep tight...and don't let the bed bugs bite!!! ��
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