After all this time trying to get rid of Wilbur, it seems there's a new kid on the block that I'm now referring to as Wilma. As many of you already know, I started taking chemo August 2018. A low dose that I ended up taking daily for 14 months (I was told to stop on October 2019). My initial results were promising and had signs of shrinkage. I had MRI's in March and June 2019 that were considered stable, and I had hopes to see my neuro-oncologist at Duke this fall and stop taking chemo. But there was a hiccup.
In September, I decided to take a week vacation to New England. I was hoping for some brisk fall temperatures and the beginnings of the foliage. I went to New Hampshire and Maine (two states I had never visited before). While I did get SOME foliage, I took the heat with me as I drove north. I told everyone "You're welcome for your last weekend in summer!" I don't what happened the last couple of days of the trips, maybe I pushed too much to get home from Maine, but that next week I reached out to the team at Duke about new seizures. I started a new medicine and made an appointment to see Dr. R.
On the October 16, 2019 MRI, my doctor wasn't happy with what she saw and wanted to see the results of another MRI in a months time. Since I'm been having increased seizure activity, I wasn't initially worried because of the way seizure activity shows up during an MRI with contrast. I had the second MRI on November 16, 2019 and my doctor called me to discuss the results and next steps because something was going to have to be done.
In that month that I had been off chemo, I could tell sometime wasn't right. At work, I'd started having problems remembering numbers and/or getting them in order. If someone started talking to me really fast on the phone, I'd have to slow them in order to get the needed information. I'd also started losing feeling on the right side of my body. That made things interesting for typing, I'd miss letters completely or accidentally hold a key I wasn't trying to use. I remember joking with the MRI technicians in November that it didn't matter how they did the IV this time because it wasn't going to hurt me cause I couldn't feel (Keep in mind, the IV is usually that ABSOLUTE worst part of any procedure for me)
I got worried the Sunday before Thanksgiving. I wasn't feeling good but couldn't describe what was really going on other than a headache. I tried calling my parents and couldn't get through because they were attending the community Thanksgiving worship. I could remember the number for their house (which has been the same my entire life) but I couldn't correctly dial either of their cell phones. Frustrated, I closed by eyes and tried to rest so the headache might ease. Later, I was aware enough to call my Uncle Andy to have him track down my parents, which he did. Mom called my brother to come watch me until they could get to me, he'd had to drop by work that evening and was nearby. I decided not to go to the hospital but, so I wasn't alone, Dad stayed over the next two nights.
Right after Thanksgiving, I got a call from Duke about scheduling a biopsy. I thought things were moving along only to find out I'd hit a road block with my insurance. The whole was so frustrating. Mom and I were at my kitchen table having simultaneous conversations with three people at Duke when I finally asked Mom to reach out to our local healthcare navigator to see what could be done in Charlotte. Angela had me an appointment with an in-network specialist while we were still on hold with Duke.
On December 6, Dad and I made our way to Charlotte to meet Dr. Stettler. I admit that I lost it when his nurse stepped out of the room leaving the MRI images visible on his screen. I could tell there had been significant changes from the MRI in October. The next steps were going to be a functional MRI at the end of December with my case being presented at the brain tumor board. It seemed that all I could do was wait while my symptoms worsened. At my family Christmas on December 14, it was hard to realize that I couldn't fix my own plate and that I was going have my left hand because my right was useless that day. That Sunday, I was scheduled to work and made it in. I worried my work family enough that they called my parents to come pick me up. I haven't driven since that day. I told Mom to contact Angela first thing Monday, which she did and we were to take me to the ER in Charlotte.
Needless to say, that was a LONG day. I got another MRI (that's 3 now exactly a month apart) and I was given steroids to reduce the swelling in my brain. It was an amazing transformation. I went from barely able to put two words together to talking normally once I'd been given the steroids. (On a side note, I also found out that I am allergic to an antibiotic levofloxacin. I was accidentally given the levofloxacin instead of my seizure medicine.)
Mom, Dad and I went to Concord for my functional MRI on December 26. That's the one where they are working to pinpoint specific areas of my brain controlling language, speech, and movement on my right side. On December 27, Mom moved in with me. I had almost fallen in the shower, my balance was off, and my motor skills with my right hand were nonexistent since the steroids that they had given my in the hospital were done. Luckily, the next Monday, I had a previously schedule appointment with my primary care. His checking up on me (checking in with all the specialists), adjusting when I take my medicine, and adding a steroid again has made a huge difference in my quality of life while I've been waiting for the next steps.
The brain tumor board met on January 8 where my case was discussed and the next round of appointments we set. Mom and I think that the neurologist I met with on January 15 really got the ball rolling because before that it looked like I'd be waiting until February. Instead, I got a call on January 17 about my surgery date and time. This has been an exhausting week. I met with my other neurosurgeon on Monday. The rearranged my appointment with the neuropsychologist for Tuesday morning. And then it was back to Charlotte at 6:30 a.m. on Wednesday for an MRI where the mapped the area they need for surgery.
On Friday, January 24, 2020, I checkin for surgery at 5:30 a.m. I almost feel that I'm more positive than the doctors. I don't know if they're used to people having unrealistic expectations or what? I know to expect the unexpected. I know there will be changes. I also know that Wilma is very different from Wilbur. My theme song right is "Into the Unknown" from Frozen 2, it seems resonate with the situation right now.
I am asking for specific prayers for my medical team and the anesthesia team. I know that my case is complicated because I didn't wake up in Utah the way the planned. They are planning two surgeries because they plan to place an electrode grid and further map my brain to isolate the speech and motor functions. But all of that will depend on my happens tomorrow. I'm also asking for specific prayers that any brain swelling doesn't cause additional problems. And please, please keep my family in your prayers. In some ways I think this is harder on them than it is on me.
I also ask for prayers for my anxiety about my fur-child, Jasper. This sweet gray and white tuxedo cat has been an absolute lifesaver since he showed up on my front porch in a rain storm. While on chemo, he gave to get out of bed everyday, even if that was all I accomplished all day. I'm also convinced that he knew some was wrong from October. He's never been a lap cat. In October, he started climbing onto my chest and sleeping there purring the whole time. He's continued to do so and stands guard on me each night.
I read every note or comment and I appreciate every thought or prayer even if I don't remember to reply.
Thursday, January 23, 2020
Friday, January 10, 2020
They say "Patience Is a Virtue"...
I've always thought patience wasn't a strong suit of mine. In fact, I'm sure I'm very "impatient" more often than not. But I'm learning.
The medical board met this week to discuss my case in Charlotte. They had the results from my functional MRI on December 26 and since they didn't meet on New Years' Day, they had all the information at hand when they met; everything from Utah and Duke. The current plan will involve an open resection where they input sensors in my brain and observe speech and language and motor functions before removing two-thirds of the tumor. It's a longer process with a lot of moving parts that will take some time and planning (I think we all thought I'd be recovering from surgery by now) but this approach could make a big difference long term. While we were on the phone with the doctor, I looked at Mom and said "I want to win the war, not just a single battle."
Thank goodness I have a wonderful primary physician who listens, will research options, and will call on my behalf if he thinks they're not prioritizing the way he thinks they should me. A simple suggestion of splitting my seizure as long as the total dosage didn't change has made a HUGE difference this week. (After probably helped with my patience on Wednesday when Dr. Stettler ran through the boards' recommendations.)
The main thing is that I will be meeting with a team of doctors (two neurosurgeons, a neurologist, a neuropsychologist, and who know who else) in the next couple of weeks. It also sounds like I will be in the hospital for over a week or two.
Since I feel like a science experience, I'm keeping track of the differences I'm dealing with. For instance, I'm becoming a Leftie. My right hand has a case of the butterfingers. Any advice on becoming a Leftie is encouraged!
I have also temporarily lost the ability to taste. It's really weird, last weekend I managed to taste a pickle on a sandwich but nothing else. (NOT EVEN DIET SUNDROP)
Also, the right side of my body is a completely temperature. Most people know I'm rarely cold but currently my right hand and right leg have their own ideas!
PS Please forgive the typos. It's a work in progess.
The medical board met this week to discuss my case in Charlotte. They had the results from my functional MRI on December 26 and since they didn't meet on New Years' Day, they had all the information at hand when they met; everything from Utah and Duke. The current plan will involve an open resection where they input sensors in my brain and observe speech and language and motor functions before removing two-thirds of the tumor. It's a longer process with a lot of moving parts that will take some time and planning (I think we all thought I'd be recovering from surgery by now) but this approach could make a big difference long term. While we were on the phone with the doctor, I looked at Mom and said "I want to win the war, not just a single battle."
Thank goodness I have a wonderful primary physician who listens, will research options, and will call on my behalf if he thinks they're not prioritizing the way he thinks they should me. A simple suggestion of splitting my seizure as long as the total dosage didn't change has made a HUGE difference this week. (After probably helped with my patience on Wednesday when Dr. Stettler ran through the boards' recommendations.)
The main thing is that I will be meeting with a team of doctors (two neurosurgeons, a neurologist, a neuropsychologist, and who know who else) in the next couple of weeks. It also sounds like I will be in the hospital for over a week or two.
Since I feel like a science experience, I'm keeping track of the differences I'm dealing with. For instance, I'm becoming a Leftie. My right hand has a case of the butterfingers. Any advice on becoming a Leftie is encouraged!
I have also temporarily lost the ability to taste. It's really weird, last weekend I managed to taste a pickle on a sandwich but nothing else. (NOT EVEN DIET SUNDROP)
Also, the right side of my body is a completely temperature. Most people know I'm rarely cold but currently my right hand and right leg have their own ideas!
PS Please forgive the typos. It's a work in progess.
Saturday, July 22, 2017
This is my confession...
....If I'm gonna tell it, then I've got to tell it all...
Confession #1: I can't seem to make sugar cookies from scratch. I've tried multiple recipes now and have not been happy with the results, hence why I have sugar cookie dough just sitting in my freezer.
Confession #2: I think my cat Jasper was raised by dogs before he found me. He sits like a dog with his legs sprawled out behind him and he'd rather play fetch with bottle caps than just about anything. Seriously, I can't open a bottle of water without suddenly finding him nearby staring me down, his gaze darting between me and the bottle in my hand.
Confession #3: As some of you well know, I'm addicted to Diet Sundrop. So addicted, certain friends loaded their car down before they came to visit me when I was living in Florida. So addicted, I drove to Las Vegas and raided three grocery stores to get Diet Sundrop to take back to Salt Lake with me (granted that wasn't the only reason I was in Vegas but you better believe I used the trip to my advantage).
Confession #4: I started collecting snack plates a couple of years ago and probably have somewhere in the neighborhood of 50 or more plates, most with cups, in no less than 6 different patterns. Someone once asked me if I was getting then for a bridal shower or something because they usually only saw people looking for them if they needed them for an event or were catering an event. Nope! I just like them.
Confession #5: Now for the serious stuff, I have been struggling with anxiety over the last couple of years, I finally went on medication last September even though I'd known I probably needed something well before that. It is a possible side effect of Levetiracetam (my anti-seizure medicine) but I kept thinking it was something I could overcome on my own or that I would just get over it in time. I was always one that got nervous about things; like singing in front of people, giving a speech, riding a roller coaster. But it was usually something that I could handle, butterflies if you will, that once I started whatever was causing me to be nervous, I could just let go!But this was different. I had so many things I was worrying about that it became overwhelming, to the point that I felt paralyzed by fear and worry. I know people sometimes don't want to go on medications for a variety of reasons, but it's helped me tremendously.
Confession #6: I started having partial seizures again in December 2016. They are different post-surgery. Now, the right side of my face goes numb and tingly before the sensations moves down to my right hand. At first I thought maybe I'd gotten something out of whack after visiting the chiropractor, but when I went to Duke in January and described the sensations to my doctor she said they were seizures. So she upped by dosage of anti-seizure meds, which then preceded to cause a whole slew of new problems. Basically, I don't remember much of the first quarter of this year. I can tell you for certain that my Aunt's memorial service was on Saturday, March 4 and that my birthday was on Sunday, March 5. Otherwise, it's like everything blurs together. Now people have told me that's to be expected when you get older and in my mind I'm thinking "No you could probably tell me what you had for breakfast yesterday or what days you worked last week, I can't!" There might have been days that I was off from work that I didn't eat or drink anything, I just don't know.
When I went back to the doctor in April and described what had been going on. She put me on another prescription simply to counteract the side effects of the anti-seizure meds. My family doctor upped the dosage and prescribed an extended release version. However, it lowered the seizure threshold and I started having seizures again. One day it was bad enough that I had my Mom come and pick me up from work and drive me home because I didn't think I needed to drive in the condition I was in. I saw my doctor at Duke again early this month and my meds were changed again because of the seizures and the fact that I now could seem to sleep more than two hours at a time before waking up. Now I'm on an extended release version of the anti-seizure medication that I take only in the evening, in the hopes that the drowsiness side effect will work in my favor and help me sleep. What I've learned from all this is that sometimes, medications and the chosen doses are a crapshoot! I feel a bit like a guinea pig who's being experimented on. "Oh let's try this for awhile and see how it goes" "Let's add it this new drug, it's supposed to do this!" It's enough to make you crazy! Medicine is supposed to help, not make you feel worse with crazy side effects!
Confession #7: This is the one I don't even want to write about. As if putting it down and putting it out there will make it a reality. There was an 'anomaly' on my MRI this month. Basically, it was a spot that shouldn't have had anything that showed up lighter than the rest of my brain matter during the contrast images. It could possibly mean that Wilbur has a friend that is higher up and further into the left side of my brain, near the left ventricle. My doctor said she was just being paranoid, but she wants to see me in the middle of August for another MRI. If something shows up on the images then, it will change what happens going forward. And I really am not ready to talk about what that would entail. Please keep me in your thoughts and prayers! I'm praying that it really is nothing and that Wilbur is doomed to be by himself for years!
Confession #1: I can't seem to make sugar cookies from scratch. I've tried multiple recipes now and have not been happy with the results, hence why I have sugar cookie dough just sitting in my freezer.
Confession #2: I think my cat Jasper was raised by dogs before he found me. He sits like a dog with his legs sprawled out behind him and he'd rather play fetch with bottle caps than just about anything. Seriously, I can't open a bottle of water without suddenly finding him nearby staring me down, his gaze darting between me and the bottle in my hand.
Confession #3: As some of you well know, I'm addicted to Diet Sundrop. So addicted, certain friends loaded their car down before they came to visit me when I was living in Florida. So addicted, I drove to Las Vegas and raided three grocery stores to get Diet Sundrop to take back to Salt Lake with me (granted that wasn't the only reason I was in Vegas but you better believe I used the trip to my advantage).
Confession #4: I started collecting snack plates a couple of years ago and probably have somewhere in the neighborhood of 50 or more plates, most with cups, in no less than 6 different patterns. Someone once asked me if I was getting then for a bridal shower or something because they usually only saw people looking for them if they needed them for an event or were catering an event. Nope! I just like them.
Confession #5: Now for the serious stuff, I have been struggling with anxiety over the last couple of years, I finally went on medication last September even though I'd known I probably needed something well before that. It is a possible side effect of Levetiracetam (my anti-seizure medicine) but I kept thinking it was something I could overcome on my own or that I would just get over it in time. I was always one that got nervous about things; like singing in front of people, giving a speech, riding a roller coaster. But it was usually something that I could handle, butterflies if you will, that once I started whatever was causing me to be nervous, I could just let go!But this was different. I had so many things I was worrying about that it became overwhelming, to the point that I felt paralyzed by fear and worry. I know people sometimes don't want to go on medications for a variety of reasons, but it's helped me tremendously.
Confession #6: I started having partial seizures again in December 2016. They are different post-surgery. Now, the right side of my face goes numb and tingly before the sensations moves down to my right hand. At first I thought maybe I'd gotten something out of whack after visiting the chiropractor, but when I went to Duke in January and described the sensations to my doctor she said they were seizures. So she upped by dosage of anti-seizure meds, which then preceded to cause a whole slew of new problems. Basically, I don't remember much of the first quarter of this year. I can tell you for certain that my Aunt's memorial service was on Saturday, March 4 and that my birthday was on Sunday, March 5. Otherwise, it's like everything blurs together. Now people have told me that's to be expected when you get older and in my mind I'm thinking "No you could probably tell me what you had for breakfast yesterday or what days you worked last week, I can't!" There might have been days that I was off from work that I didn't eat or drink anything, I just don't know.
When I went back to the doctor in April and described what had been going on. She put me on another prescription simply to counteract the side effects of the anti-seizure meds. My family doctor upped the dosage and prescribed an extended release version. However, it lowered the seizure threshold and I started having seizures again. One day it was bad enough that I had my Mom come and pick me up from work and drive me home because I didn't think I needed to drive in the condition I was in. I saw my doctor at Duke again early this month and my meds were changed again because of the seizures and the fact that I now could seem to sleep more than two hours at a time before waking up. Now I'm on an extended release version of the anti-seizure medication that I take only in the evening, in the hopes that the drowsiness side effect will work in my favor and help me sleep. What I've learned from all this is that sometimes, medications and the chosen doses are a crapshoot! I feel a bit like a guinea pig who's being experimented on. "Oh let's try this for awhile and see how it goes" "Let's add it this new drug, it's supposed to do this!" It's enough to make you crazy! Medicine is supposed to help, not make you feel worse with crazy side effects!
Confession #7: This is the one I don't even want to write about. As if putting it down and putting it out there will make it a reality. There was an 'anomaly' on my MRI this month. Basically, it was a spot that shouldn't have had anything that showed up lighter than the rest of my brain matter during the contrast images. It could possibly mean that Wilbur has a friend that is higher up and further into the left side of my brain, near the left ventricle. My doctor said she was just being paranoid, but she wants to see me in the middle of August for another MRI. If something shows up on the images then, it will change what happens going forward. And I really am not ready to talk about what that would entail. Please keep me in your thoughts and prayers! I'm praying that it really is nothing and that Wilbur is doomed to be by himself for years!
Tuesday, December 22, 2015
That time I actually woke up in the OR....
On Thursday, while it was raining cats and dogs, Mom, Dad and I headed out towards Durham for my 10:30 a.m. pre-op appointment. This was all very "flying by the seat of our pants" style because while I'd been told a clinic to go to and had a general of the building I thought I was supposed to be in, it was all relatively unknown to all of us. Mom started out driving us....until we got on the interstate. When I realized she was topping out at 45 mph because she was having trouble seeing the lines it was raining so hard, I insisted we switch drivers at the first available opportunity. There was no chance we were going to make my appointment at the rate we were going. Between the drive and my stress about having the procedure in the first place, my blood pressure was sky high by the time we arrived at Duke at 10:20ish.
So I don't know if any of you have been to the Duke medical facilities recently, but it seems like they're huge and all interconnected. I went into the Cancer Center (where I'd been before and thought I was supposed to start this time) only to be sent to the Clinics. It was convenient that we didn't have to drive anywhere else and that the buildings were connected so we didn't have to go back out in the rain, but even with a map in hand it was easy to get turned around. So while I started the testing gauntlet, Mom and Dad made themselves comfortable for the wait in one spot without moving. This seemed to be more extensive than my last pre-op appointment, mainly because I had to give a whole medical history and explain why I was there to begin with (which I didn't really mind because Amy was nice). Two hours or so later, I was waiting for my skull x-ray which was the final test before I could be admitted.
Then back through the maze of buildings we went. Through the clinics, through the cancer center, into the DMP (Duke Medical Pavillion) only to be sent to the opposite side of that building to Duke North for my actual admission. Mom swears we had to have walked ten miles before it was all said and done. We found Duke North, got some lunch (by this point it was probably 2 p.m. or later), and waited for the call to tell us they had a room ready for me.
Once I got situated in my room, I had these handy little fiducial markers placed around my head. Senthil even shaved a few spots to make sure they had places to stick. I referred to them as landing lights. As they were being placed, I was asked questions about what I was there for and which side of my head they were looking at. I responded I was getting a hole in my head and they better keep their attention to the left side of my head because I would be mad if I woke up with a hole in the right side of my head. I remembered these things vaguely from my previous operation. They put them on me and sent me to a final MRI before I went into the OR. This time I was supposed to keep them in place all night and through the procedure. There was one placed behind my left ear that I was sure was not going to make it through the night.
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| Landing Lights! |
When I ended up Skyping with M that evening, she asked if I had a tattoo which is when I realized that my head had been signed. (If you look closely at the pic above, you can see the signature above the fiducial on my temple, right at my hairline.) I knew they traced around them in case one markers fell off, but the signature was new. I thought I looked like I could be an extra on a Doctor Who set, but then with the Star Wars movie coming out and everyone getting ready for the advance screenings, I thought maybe I would fit in on that movie set. I don't know, haven't had a chance to see it yet.
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| Why did it start glowing!?! |
Initially, I thought they said I was going back at 9:30 a.m. for an 11:30 a.m. procedure, but it was actually more like 11:30 a.m. for a 1:30 p.m. procedure. They took me to a waiting room with the 'rents where we met the anesthesiologist and some of his team. Come to find out, he'd actually worked at the U and was there when Huntsman was getting started. He knew who the anesthesiologist had been at Utah and the drugs that had most likely been used that hadn't worked on as intended. He explained that this time, I'd only be under long enough to make sure they got my head secured before I'd be allowed to regain consciousness for the rest of the procedure.
****If you're easily grossed out, stop reading here!! No for real, just stop! ****
They took me back into the OR, I transferred to the table on my own, then was told to take 8 to 10 deep breaths from the mask they put on me. I don't remember counting higher than 6. The next thing I knew, I was awake, people were all around and I had an itch under my right eye. They'd shaved a little more of my hair while I was out and the fuzzies were what kept making my eyes itch. I remember asking if someone would please wipe under my eyes. The next thing I heard was the drill. I remember feeling pressure but luckily nothing else. I have a feeling I was pretty out of it, though really, the whole shebang only took an hour or so. I do remember telling Dr. Friedman that he had been my cousin's surgeon years ago. Mom and I meant to tell him on Thursday when we saw him, but we both forgot. So obviously, the middle of my biopsy was the perfect time to tell him. I also remember him humming a song, classical, I think. I asked what it was, but it pretty much went in one ear and out the other because I have absolutely no recollection of what song someone told me he was humming. I also remember them discussing something about my stitches. I know something was added after the initial sutures. I asked after that if I could move my arms at all to wipe hair out from under my eyes (left arm only) and then I moved myself back onto the bed for transport back to my room.
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| Just after the biopsy |
I had to stay for six hours for observation before I could be discharged. My discharge was delayed a little because I started to have facial swelling and they wanted to make sure that wasn't a sign of problem. But Dr. Friedman said they got the samples they needed and that the swelling would dissipate on its own. So I was released with my head wrapped in bandages to a nearby hotel for the night. If everything looked good, we'd be free and clear to drive back home.
But before we left the area, we met up with Lew at Elmo's Diner for brunch! For all the adopted daughters of Arthur out there reading this, she's one of your sisters who also happens to have been my college roommate. After brunch, we hit the road because by gosh we had to make it home in time for the Cooke Family Christmas!!
We made it home and I got to see everybody even though I looked like I'd been hit upside the head with a baseball bat! By Sunday, I could barely see out of my left eye and felt like I was always wincing because of how tight the skin around my cheek, temple and eye got. So since Mom and Dad got hit with some nasty allergies and I could literally hear fluid dripping behind my left ear when I held my head upright, I decided I would be well served to just take it easy and sleep as much as I wanted or needed for the next couple of days.
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| Saturday |
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| Sunday |
So for now I'm awaiting the biopsy results to see if Wilbur remains a grade 2 or if he's become an even bigger pest and become a grade 3. I have a follow-up appointment on Dec. 30 which Mom and I will be traveling to Durham for on Dec. 29. I truly appreciate everyone's thoughts, prayers, and positive energy. Please continue the thoughts and prayers as I find out where the path leads from here!!
Oh! P.S. Did anyone else make the connection between Wilbur from Charlotte's Web and the fact that I have an astrocytoma, which are cells known for their web-like appearance???? DG was that what you were thinking when you suggested the name Wilbur and I just never knew it!?! My night nurse, Morgan, totally thought that was the reason behind the name when I told her the story of Wilbur and it had honestly never occurred to me before.
P.S.S For your Christmas pleasure!
Merry Christmas to all and to all a good night!!
Wednesday, December 16, 2015
Like I Need ANOTHER Hole in the Head!!!
You know the saying "I need [whatever it is] like I need a hole in the head!" Well since Wilbur, I've taken to saying "I need [whatever it is] like I need another hold in my head!!" But apparently, the time has come for me to get another hole in my head. :P
So here's DL: When I had surgery in Feb. 2014, 90% of "Original Wilbur" was removed so the surgery was very successful. The remaining 10% couldn't be removed because of its proximity to some very important parts of my brain. If the surgeon hadn't stopped when he did, I could have been paralyzed on my right side and/or unable to communicate. My team didn't think I needed to have chemo or radiation at that time. But it was never a question of "if" I would have chemo and radiation, it was always a question of "when."
Well, my friends, "when" is "now" or at least in the very near future. It all started back in the early summer when I got the brilliant idea to take myself off my medication. I know, I know!! You can't tell me anything I haven't already been told and I've seen the error of my ways even going so far as to set AM/PM alarms to make sure I remember to take my meds every 12 hours. During the late summer months, I starting having "episodes" again even though they are very different than they were before I had surgery, they still feel the same when they come on. Nowadays, I 'recognize' an episode because I get a sharp, metallic taste in my mouth and my right arm get a pins and needles sensation like it's been asleep. After a couple of occurrences, I called my doctor and got back on my meds and made appointments for the end of September.
I think I knew even then what this all would probably mean, because I was honestly more nervous for that MRI and those results than I had been for anything else I'd had to go through at that point. So basically the results showed that the remaining 10% of "Original Wilbur" has started to grow again. It's growing in terms of millimeters, not aggressive by any means, which is a good thing, but the growth means I can't really rest on my laurels. The longer Wilbur is left untreated, the more likely he will cause permanent damage to areas I don't want damaged.
My neuro-oncologist at Utah suggested starting chemo and radiation treatment within the next six months. I was in tears after leaving his office. Just because you expect something to the be the case, doesn't mean that you're ready to hear that news. My neurosurgeon didn't see the immediate need to start chemo and radiation, especially when I said there were so many things that were up in the air in my life that I wanted to get sorted, but he still seemed to think that I'd need chemo and radiation within the next year. I had time to process the information and talk to family and friends (several of whom made entirely rational and valid points I hadn't initially considered) and I returned to North Carolina with the mindset that I was going to get chemo and radiation over, done with, and behind me as soon as I could.
But then began the "hurry up and wait" game. I had to find out where I could receive in-network treatment in NC (Duke), then I had to get referred to a neuro-oncologist at Duke, then I had to get my prior test results sent to Duke, and so on and so forth. Since I had in my head that I wanted to have my six weeks of chemo and radiation (per Utah) over and done with before Christmas, it was hard to wait and be patient. Then I found out that I would have to undergo a needle biopsy before I could be seen by a neuro-oncologist at Duke and I balked. All I kept thinking was "I don't need another hole in my head!!" But again, cooler, more rational and logical heads prevailed (namely Amelia) and I realized that most anywhere I went would want to run their own tests on fresh samples and not rely on almost two year old tissue samples.
SOOOO.....the long and short of it is that tomorrow, Dec. 17, I'm going to Duke for pre-op appointments and having a biopsy (where yes, they will put another hole in my head) on Friday, Dec. 18. And yes, I will be home on Saturday in time for the Cooke Family Christmas!!
So here's DL: When I had surgery in Feb. 2014, 90% of "Original Wilbur" was removed so the surgery was very successful. The remaining 10% couldn't be removed because of its proximity to some very important parts of my brain. If the surgeon hadn't stopped when he did, I could have been paralyzed on my right side and/or unable to communicate. My team didn't think I needed to have chemo or radiation at that time. But it was never a question of "if" I would have chemo and radiation, it was always a question of "when."
Well, my friends, "when" is "now" or at least in the very near future. It all started back in the early summer when I got the brilliant idea to take myself off my medication. I know, I know!! You can't tell me anything I haven't already been told and I've seen the error of my ways even going so far as to set AM/PM alarms to make sure I remember to take my meds every 12 hours. During the late summer months, I starting having "episodes" again even though they are very different than they were before I had surgery, they still feel the same when they come on. Nowadays, I 'recognize' an episode because I get a sharp, metallic taste in my mouth and my right arm get a pins and needles sensation like it's been asleep. After a couple of occurrences, I called my doctor and got back on my meds and made appointments for the end of September.
I think I knew even then what this all would probably mean, because I was honestly more nervous for that MRI and those results than I had been for anything else I'd had to go through at that point. So basically the results showed that the remaining 10% of "Original Wilbur" has started to grow again. It's growing in terms of millimeters, not aggressive by any means, which is a good thing, but the growth means I can't really rest on my laurels. The longer Wilbur is left untreated, the more likely he will cause permanent damage to areas I don't want damaged.
My neuro-oncologist at Utah suggested starting chemo and radiation treatment within the next six months. I was in tears after leaving his office. Just because you expect something to the be the case, doesn't mean that you're ready to hear that news. My neurosurgeon didn't see the immediate need to start chemo and radiation, especially when I said there were so many things that were up in the air in my life that I wanted to get sorted, but he still seemed to think that I'd need chemo and radiation within the next year. I had time to process the information and talk to family and friends (several of whom made entirely rational and valid points I hadn't initially considered) and I returned to North Carolina with the mindset that I was going to get chemo and radiation over, done with, and behind me as soon as I could.
But then began the "hurry up and wait" game. I had to find out where I could receive in-network treatment in NC (Duke), then I had to get referred to a neuro-oncologist at Duke, then I had to get my prior test results sent to Duke, and so on and so forth. Since I had in my head that I wanted to have my six weeks of chemo and radiation (per Utah) over and done with before Christmas, it was hard to wait and be patient. Then I found out that I would have to undergo a needle biopsy before I could be seen by a neuro-oncologist at Duke and I balked. All I kept thinking was "I don't need another hole in my head!!" But again, cooler, more rational and logical heads prevailed (namely Amelia) and I realized that most anywhere I went would want to run their own tests on fresh samples and not rely on almost two year old tissue samples.
SOOOO.....the long and short of it is that tomorrow, Dec. 17, I'm going to Duke for pre-op appointments and having a biopsy (where yes, they will put another hole in my head) on Friday, Dec. 18. And yes, I will be home on Saturday in time for the Cooke Family Christmas!!
Tuesday, August 26, 2014
New Normal
One Sunday morning in March, the one closest to St. Patrick's Day, I drove to meet friends for brunch at the Lazy Day Cafe. It was kind of a big deal because it was the first time I had driven on my own since the surgery. I turned on the CD player (Dad doesn't understand my music unless I happen to be listening to oldies or country) as I was driving to meet Krista and Mercedes. I was almost to the cafe when it happened..."On Top of the World" by Imagine Dragons started playing. It was the first time I'd heard the song since my surgery and I lost it. Crying so hard I about couldn't see, I suddenly started laughing in sheer joy because it finally hit me...I'd survived!
You see, I'd cried the first time I heard this song and listened to the lyrics (click here to view the lyrics) because I kept thinking "That's how I'm going to feel after the surgery!" In my mind before the surgery, this song was going to be my victory song. So there I was having a full on Steel Magnolias moment as soon as the song started playing. There's this part in Steel Magnolias after Shelby's funeral where Truvie says "laughter through tears is my favorite emotion" that I guess I had never fully understood until that moment.
It was during the week following this brunch that I had a series of follow-up appointments. One with my neurosurgeon and one with an oncologist at the Huntsman Cancer Institute, because he specializes in continuing care for brain tumor patients. It was on the way to this appointment when I came across this!
Those of you who had Bessie for Latin at Burns may recognize part of this image, particularly this part...(since this was one I remember working on in high school)
But who knew that the puzzle we did way back when was actually part of a larger puzzle with 24,000 pieces (yes, you read that right). Random side note, I know but I thought it was awesome!
And it's hard for me believe that five months have passed since that time. In April, I completed my speech therapy. Actually, I met with Lisa just before the PRT Dept. Luncheon where I received the Most Inspirational Masters Student Award, I may be the first person to receive that award two years in a row. That was also the weekend that Dad and I headed on a cross-country trip back to NC.
I believe that some of you know that I wasn't in NC a full week before I packed up and headed to Brazil for almost two weeks. But what you might not have realized was that this was another test in my book. I had missed going to Kenya in September 2013 because of Wilbur and since that time one of my goals had been to be well enough to travel to Brazil for the 2014 conference. And I don't think it hit me until I was in the São Paulo airport and couldn't order in Portuguese that it dawned on me I was in South America...in the Southern Hemisphere for the first time in my life! Based on my experience at the airport, I was afraid I was in for more than I bargained for and wouldn't be able to communicate at all (again).
Luckily, the airport was my biggest struggle. I absolutely fell in love with Bonito and the surrounding area. I probably need to dedicate a separate post to my time in Brazil.
Now I'll have you know that I've been working on this post since that Sunday in March and have just never been able to finish it for some reason. But in the past couple of months I have been reminded once again how utterly precious and fragile a gift life is in the first place. Its bittersweet because while this has been a summer of friend and family celebrations (including the birth of my nephew Emmett!) it has also been a time of mourning family friends we lost. My thoughts and prayers go out to all those who have recently lost a loved one.
One year ago today, I posted this to Facebook:
It's hard for me to believe that a year has gone by since I was diagnosed. In some ways it feels like it was more than a year ago since I found out and in others it feels like it was yesterday. I had more follow-up appointments in June and everything is still looking good. I will have more follow-ups in October and I know the doctors plan to keep a close eye on me for awhile, after all having a brain tumor is a life sentence and chances are that I haven't heard the last of Wilbur yet. However, for the time being, I'm going to enjoy living life for awhile! I still have a few lingering issues with my speech, mostly when I'm tired. Sometimes there are words I that won't come to me, other things I mispronounce, a slight weakness still with the right corner of my mouth, but I've realized that I'm the only one who notices and I shouldn't be self-conscious about it. And so while in some ways, my life has changed forever in ways I never expected, I've realized that the new normal for me is a good place to be.
You see, I'd cried the first time I heard this song and listened to the lyrics (click here to view the lyrics) because I kept thinking "That's how I'm going to feel after the surgery!" In my mind before the surgery, this song was going to be my victory song. So there I was having a full on Steel Magnolias moment as soon as the song started playing. There's this part in Steel Magnolias after Shelby's funeral where Truvie says "laughter through tears is my favorite emotion" that I guess I had never fully understood until that moment.
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| Lazy Day Cafe with Krista and Mercedes |
Those of you who had Bessie for Latin at Burns may recognize part of this image, particularly this part...(since this was one I remember working on in high school)
But who knew that the puzzle we did way back when was actually part of a larger puzzle with 24,000 pieces (yes, you read that right). Random side note, I know but I thought it was awesome!
 |
| With Lisa |
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| PRT Award Luncheon |
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| Hotel Pirá Miúna with a Travelers Palm out front |
Now I'll have you know that I've been working on this post since that Sunday in March and have just never been able to finish it for some reason. But in the past couple of months I have been reminded once again how utterly precious and fragile a gift life is in the first place. Its bittersweet because while this has been a summer of friend and family celebrations (including the birth of my nephew Emmett!) it has also been a time of mourning family friends we lost. My thoughts and prayers go out to all those who have recently lost a loved one.
One year ago today, I posted this to Facebook:
It's hard for me to believe that a year has gone by since I was diagnosed. In some ways it feels like it was more than a year ago since I found out and in others it feels like it was yesterday. I had more follow-up appointments in June and everything is still looking good. I will have more follow-ups in October and I know the doctors plan to keep a close eye on me for awhile, after all having a brain tumor is a life sentence and chances are that I haven't heard the last of Wilbur yet. However, for the time being, I'm going to enjoy living life for awhile! I still have a few lingering issues with my speech, mostly when I'm tired. Sometimes there are words I that won't come to me, other things I mispronounce, a slight weakness still with the right corner of my mouth, but I've realized that I'm the only one who notices and I shouldn't be self-conscious about it. And so while in some ways, my life has changed forever in ways I never expected, I've realized that the new normal for me is a good place to be.
Friday, April 11, 2014
I guess I've always known that I'd need therapy someday...
I guess all families have their inside jokes or sayings...at least I assume they do! In our family, two of the sayings that I have heard over and over again over the years are:
The day after I got home from the hospital, I woke up at 5:30 or so (early for me, normal for Dad) and went to the McDonald's near my house and then to the grocery store. I think Dad was worried about the grocery store being too much for me to handle. (We'd discovered the evening more that I got overstimulated very easily. I couldn't handle having the TV on with the sound on as well. I could watch or I could listen, not both) But since it was so early on a Saturday morning I was fine and I figured it would me a whole lot easier for me to walk with Dad and show him where things were than it would be for me to try to explain with words where things were or just let him go in and try to find things on his own.
One week after the surgery, I wanted to get out of the house so we ended up going to Midway to see the Ice Castle (which I thought was really cool). And the next day I got the staples removed!
- Your momma must have dropped you on your head as a baby
- Youngun' you ain't right (in the head)
I'm pretty sure I was one of those kids with an overactive imagination that got me into trouble more than once. And I'm pretty sure that one or both of these phrases were usually used after I'd said or done something off the wall that didn't make sense to anybody but me. So I guess you could say it was just a matter of time until I'd need therapy of some sort.
In the hospital, I met with speech therapists, physical therapists, and occupational therapists. The only ones I saw before I was out of the ICU were the speech therapists. Now in the hospital, they were also the ones who determined what kind of food I got. So they gave me different "snacks" to see how I managed. I remember applesauce, saltines, and graham crackers (seems like there was one other item but I don't remember what is was). You have realize that the day the surgery, I could barely use my right hand. Not only did I have IV's in both arms, but my right hand was so weak I couldn't even lift and grasp a fork. The right side of my mouth was also weak. Drinking something straight from a cup was out of the question unless I wanted to spill it all over me. I had to have a straw for close to the first three weeks after surgery. But I admit it was kind of interesting to me in a weird way. I knew that things had changed for me but it was only when I was being tested that I learned what the current limits were. The amazing thing was the limits became less and less of an issue every day.
On Thursday after the surgery, I got to meet with the physical therapist in the morning and the occupational therapist in the afternoon. I loved the physical therapist! She got me up and walking about (which made me very happy, in case you haven't noticed I have trouble staying still, it's a wonder I could ever play "Freeze" as a child) and she made herself an obstacle that I had to move around. I still smile thinking about going with the occupational therapist and seeing her in the hall and knowing from the way she was looking at me that she was going to get in my way again. I know I just shook my head and said "No, no, no!" as I moved to pass her. She and the occupational therapist laughed because I caught on so quick and moved to avoid her.
In the hospital, I met with speech therapists, physical therapists, and occupational therapists. The only ones I saw before I was out of the ICU were the speech therapists. Now in the hospital, they were also the ones who determined what kind of food I got. So they gave me different "snacks" to see how I managed. I remember applesauce, saltines, and graham crackers (seems like there was one other item but I don't remember what is was). You have realize that the day the surgery, I could barely use my right hand. Not only did I have IV's in both arms, but my right hand was so weak I couldn't even lift and grasp a fork. The right side of my mouth was also weak. Drinking something straight from a cup was out of the question unless I wanted to spill it all over me. I had to have a straw for close to the first three weeks after surgery. But I admit it was kind of interesting to me in a weird way. I knew that things had changed for me but it was only when I was being tested that I learned what the current limits were. The amazing thing was the limits became less and less of an issue every day.
On Thursday after the surgery, I got to meet with the physical therapist in the morning and the occupational therapist in the afternoon. I loved the physical therapist! She got me up and walking about (which made me very happy, in case you haven't noticed I have trouble staying still, it's a wonder I could ever play "Freeze" as a child) and she made herself an obstacle that I had to move around. I still smile thinking about going with the occupational therapist and seeing her in the hall and knowing from the way she was looking at me that she was going to get in my way again. I know I just shook my head and said "No, no, no!" as I moved to pass her. She and the occupational therapist laughed because I caught on so quick and moved to avoid her.
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| I wanted to see the Ice Castle in Midway! |
One week after the surgery, I wanted to get out of the house so we ended up going to Midway to see the Ice Castle (which I thought was really cool). And the next day I got the staples removed!
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| Why are you taking my picture? |
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| Back side before staples taken out |
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| Front side with staples |
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| We'll call this my signature face... |
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| Before |
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| After...no more staples!! |
That first week out of the hospital was when I started outpatient therapy. I met with Chelsea for PT twice (total) before I was dismissed and Mark from OT once. Mark was able to measure the strength of my grips on both sides (my right hand has regained some strength since then but it's still slightly weaker than my left) and my response time on this really cool light board. The light board is a precursor to testing ability to drive. I was just below normal at the point, but with the way I was progressing Mark didn't think I'd need to see him again or even drive with him before being able drive on my own. I also had outpatient speech therapy twice a week with Lisa and Sydney (who's working on her masters in speech therapy). And I promise the speech therapy has had no effect on my accent!
I don't remember learning to talk. And I don't think I've ever really thought about what part of your mouth you use to make certain sounds. This forced me to think about things like that. For a while I was really having trouble distinguishing between the "sk" sound and the "st" sound. Like instead of saying Starbucks, I would say Scarbucks. I had one whole session working on pronouncing each sound and not mixing it up. These sessions also made me realize that there are certain words I've never liked to say because they sound weird to me. One of my words is rural. With the way I say it fast there's just now good way to pronounce the second "r." Sydney's word was delicatessen. Now when I stumble over a word, I have to slow down to pronounce it correctly and then repeat it three times. On Sydney's last day, I joked that before I left she had to say delicatessen but that I would be nice and now make her repeat it three times. Lisa and I were amused, Syd was not.
Today was my last speech therapy session. Now I still stumble over words when I'm trying to talk really fast or am feeling tired. I know I joke about needing therapy, but honestly I admire all the therapists I'm come into contact with. They probably don't hear it enough, but their efforts are greatly appreciated!
I don't remember learning to talk. And I don't think I've ever really thought about what part of your mouth you use to make certain sounds. This forced me to think about things like that. For a while I was really having trouble distinguishing between the "sk" sound and the "st" sound. Like instead of saying Starbucks, I would say Scarbucks. I had one whole session working on pronouncing each sound and not mixing it up. These sessions also made me realize that there are certain words I've never liked to say because they sound weird to me. One of my words is rural. With the way I say it fast there's just now good way to pronounce the second "r." Sydney's word was delicatessen. Now when I stumble over a word, I have to slow down to pronounce it correctly and then repeat it three times. On Sydney's last day, I joked that before I left she had to say delicatessen but that I would be nice and now make her repeat it three times. Lisa and I were amused, Syd was not.
Today was my last speech therapy session. Now I still stumble over words when I'm trying to talk really fast or am feeling tired. I know I joke about needing therapy, but honestly I admire all the therapists I'm come into contact with. They probably don't hear it enough, but their efforts are greatly appreciated!
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