I kept meaning to put up the exact findings from my MRI results, for those who are interested in the science-y part of all of it, plus just for the documentation of it.
Date: 2/03/17
FINDINGS:
The diffusion-weighted imagine demonstrates no evidence for acute infarction. The axial gradient school imaging demonstrations no evidence for intracranial hemorrhage.
There are scattered opacified mastoid air cells on the right Paranasal sinuses/mastoid air cells are otherwise unremarkable.
There are numerous enhancing intra-axial lesions throughout bilateral cerebellar hemispheres, as well as scattered throughout the supratentorial brain bilaterally, left greater than right. Posterior fossa intra-axial lesions include a cluster of three lesions in the vermis, each measuring up to 7-8 mm. Within the superior aspect of the left cerebellar hemisphere, there is a mass measuring 2.5 cm in transverse dimension and there re numbers confluent masses within the interior and posterior aspect of bilateral cerebellar hemispheres, left great than right, measuring up to 6.0 x 3.1 cm on there left and up to 2.9 x 1.6 cm on the right. There is associated edema as evidenced by increased T2 and FLAIR signal adjacent to these lesions, especially on the left. This exerts significant mass effect on the fourth ventricle, which is markedly narrowed. There is no transependymal flow of CSF or evidence for vertriculomegaly at this time.
In addition to the metastatic disease within the posterior fossil, there are supratentorial enhancing lesions. This includes a left lateral temporal lobe lesion measuring 1.1 cm, an inferour and lateral left frontal lobe lesion measuring 1.7 can, and a posterolateral left frontal lesion near the vertex measuring up to 1.4 cm. On the right, there is a lesion within the lateral aspect of the temporal lobe measuring 1.6 cm.
There is a lesion within the left occipital lobe measuring 1.1 cam and there is a lesion without the right occipital lobe measuring 1.7 cm. There is also a posteromedial right parietooccipital lesion meaning 1.3 cm.
There is mottled abnormal signal intensity throughout the calvarium including the cloves. There is also mottled abnormal signal intensity within the upper cervical spine, suspicious for osseous metastatic disease. (*Dr. Fleener not concerned about this part for now.)
IMPRESSION:
Widespread intra-axial metastatic disease, including supratentorial and infratentorial lesions. Numberer cerebellar lesions are present with associated posterior fossa edema and mass effect on the fourth ventricle. Signal abnormalities within the osseous striations suggests osseous metastatic disease as well.
THERE YOU HAVE IT!!!!
Tuesday, February 28, 2017
H&P #19 + Leave it to Fleener
We are back on regularly scheduled appointments with Dr. Fleener and for the once every 3 weeks treatment of Herceptin and Perjeta.
Before my treatment today, I met with Dr. Fleener, who is still optimistic that radiation will melt and shrink the tumors from my brain and put me back in a state of remission. "I don't want to blow smoke at you, but I have that hope, one, because I choose to, and also because so far your cancer has been so sensitive to treatment, that it makes sense that would continue. Plus, you responded so well with your symptoms, so quickly, that gives me great hope, too."
Now, we go back to treating the rest of my body and hoping that I'll be back on the longer end of the time frame.
She told me that she and Dr. Goble presented my case at a conference, along with another one from the area, and that she has also been researching alternative options for future treatment, plus clinical studies. There is an option to have a port in my head and treat the brain directly with Herceptin. Dr. Fleener feels that my having HER2+ can be a good thing, in this case, because these drugs have done so well at keep cancer out in the rest of my body. "Before these drugs, we were having patients die of lung or liver metastasis, but now that H&P have done such wonders on patients, they are seeing more of the cancer show up in the brain, which stimulates studies and clinical trials."
She also wanted to tell me that she's seen my name all around town and how great this community is for rallying around families like mine.
Finally, I asked about my MRI results, which included a small blip about modeling on the cervical spine, which is suspicious for bone mets, but Dr. Fleener thinks it was residual. "Plus, the radiation most likely got that, as the upper spine is within the treatment area.
In leaving, she reminded me how much her staff has been thinking about me, praying for me, and loves that I'm doing better. "I was SO glad and relieved when Dr. Goble told me how much better your symptoms are and how much better you're feeling. That, alone, shows that radiation has worked on some levels. That's in part because of you and your strength, so keep it up!"
As I continue to walk this journey, there are still the pulls to ask, "WHY?" Instead of dwelling on that, I'm one to just ask, "What I can do now?" And, I do something each day to make memories or set up plans--just in case---something happens again quickly. I don't know if I'm meant to become a miracle or simply just to press forward in faith and inspire others to endure their own trials with a happy heart and unbreakable faith.
I came across this quote a few days ago, which may have been an answer to prayers.
Saturday, February 25, 2017
Rock the 'Hawk
One major side effect I was promised before radiation began was hair loss. Again. "You'll lose all your hair, and it might not grow back."
Well, suck.
This last time, I've TOTALLY babied by hair, and it was SOOOOOOOO close to growing out to the exact style I wanted, plus thick and healthy and strong. OH, well. Just hair, right?
I did talk to the techs who gave me SOME hope, that not EVERYONE completely loses all their hair and some people do see it grow back. You just never know. They also couldn't promise me exactly when it would fall out. The closest answer was, "Sometime after the last treatment ends."
So, this was the week to do something. And, by Thursday, it was coming out on its own. My scalp kind of feels like it's sunburned, from radiation, I assume. So, as I was trying to massage my head and ease some of that discomfort while watching tv, this started happening, too:
Thank goodness I had an appointment for Friday.
My friend, Jenn, met me for fun and emotional support. I also brought my wig to be styled, since there's a chance I might never have to color/cut my own bald head again!
Still with some optimism that it might not be gone forever, we decided to go with a faux hawk because that top part is the HARDEST and LONGEST thing to have to try to grow out!!!!
Just a bit of a pile on the floor!!
Wig time!!!
I am so grateful for this girl. When we moved to College Station, I was feeling like I needed to lose the platinum and start going back to "me." I just happened to sit in her chair, and she's been such a part of this journey ever since. It's amazing how great good hair can feel and how poorly the opposite can be. Being forced to choice the sad choice has been so much better with her there to help. Much love!
"Burg-a-lar"
(a nickname with a LOOOOOOOONG story!)
The boys all told me that it looks weird and that I look like a boy. "But, you're still pretty, Mom. I like your eyes."
Boy-ish or not, time to rock what I got!
Tuesday, February 21, 2017
LAST RADIATION!!!
We did it! We made it through 10 radiation treatments!!!
What a difference radiation has made. Between medical science and prayers, we've seen a major turn around in symptoms over the last 2 weeks, which means that--on at least a few levels--it's working. Now, we wait 6 weeks for another MRI and see how well.
February has been rough this year. The hardest--and scariest--thing in all of this is just how quickly cancer came back and nearly took me out. I went from myself to planning a funeral in a matter of days. A 37 year old should not do that. It just goes to show you how much you REALLY do need your brain to be----you. And alive. It also goes to show just a bit how aggressive and quick my cancer is turning out to be. So, we know a little more of who we're dealing with, but as Dr. Fleener said, "it's aggressive, but so far it's responded well to treatments." Fast growing, but weak. Comes at you with everything, but backs down with battled. Like a yiping little dog. I can handle that for now.
Now that my brain is mostly back and my body doesn't seem so far behind, I can actually record a little more of the experience and timeline of the last few weeks.
On January 31, I had a scheduled PET scan. In preparation for that scan, there is a 24-hr low carb/fast. The morning of the scan, I woke up not feeling great. When I walked into the kitchen, I just threw up on the tile. Weird, but figured it had to do with blood sugar/nerves/prep for scan. Went about day with few other problems than mild headache, which I assumed had to do with scan stuff. Went to scan, ate. Improved.
The next morning, woke up the same. Vomited in kitchen sink, continued with uncontrollable dry heaves, causing my bladder to freak out and peed all over myself with each wretch. Drove kids to school and threw up multiple times in car rider line. Faculty insisted on sending me to school nurse. Water and crackers and back out. Seemed fine for rest of day, minus worsening headache.
Thursday morning was similar. Headache worse.
Friday drove to Fleener's office. Fluids, meds, MRI planned. Cancer's back.
I babied myself over the weekend, so as not to end up in ER.
Goble on Monday. Cancer is back and BAD.
Fleener on Tuesday. Skipped chemo. Movie and lunch with Stephen. Steroids and Zoran working to control symptoms.
1st radiation. Vomit. Meds not helping enough. Fluids.
More vomit. Headaches all the time. Starting to not think straight. Car rides not good. Mostly in bed.
Here's where it all starts to run together. I was not able to eat or drink without throwing up. My head hurt all the time, I was starting to lose balance and the ability to remember or think. It got worse and worse until Friday Stephen was thinking I'd be in a wheelchair over the weekend and funeral plans were starting to get underway.
And then, SLOWLY, radiation started to work.
My headaches eased. I wasn't throwing up every time I moved or breathed. I could actually call my mom on the phone on Sunday. There was a breakthrough.
And, then it was the long process of digging back out of mostly dead.
Stephen and I actually went out for a real dinner for Valentine's Day. I ate. Not much, but I ate.
Stephen was able to leave on vacation and we all survived---with MUCH help. But, we made it.
And, I haven't thrown up in over a week---even without the meds!!!
The truly scary thing was just how quickly it all went down. So fast and so far. We were not AT ALL prepared for that. From 6-12 months down to 4 days? Not fair, cancer. Chill, okay?
At least the good to come from that shock was the blaring reminder that we are blessed to know ahead of time that I don't have all the time we thought I might. We have the chance to say things we'd want said, to plan for my wishes and have it all booked and scheduled so when the time comes, it can be a peaceful time and not a stress of phone calls and scrambling for accommodations. I can personally ask my loved ones to be part of my life celebration, even through the heart aching tears. I can write letters and buy gifts. We can make videos and take photos. We can make precious, cherished memories. We can talk of life beyond and of eternal families and Mom continuing to be mom beyond the veil, to continue to mother and love from heaven. Even some known time is better than being gone without letting those I love know that the happiest all my favorite days have been with them.
So, that's where we are now.
Radiation is complete. We wait. And, while we wait, we go back to treating cancer in the rest of my body. So, if my brain could just stay in remission, we'll be on to guessing where it's coming back next.
And, I'll keep on telling you that I'll be dying every other year. And, then...SURPRISE!!...we beat it back. Again. Maybe I'm not dying this year after all!
There's too much of the world I still haven't seen and too many milestones of which I still need to be part.
Saturday, February 18, 2017
Breakout
Well, the breakout's back. It had been such a miracle to FINALLY be done with, what we could only guess, was a reaction to Herceptin and Perjeta last fall. I started noticing this painful, ugliness coming back on Friday, and it keeps on coming. My arms, my abdomen, my legs, mostly upper thigh, but spots all the way down. Not to be left out, my face also seems to want to join in. Doctors don't get it, as it doesn't make sense with radiation and my meds haven't changed. Maybe, just maybe....stress?
Or, perhaps, my skin is just trying to be extra helpful in clearing my body of toxins. Thanks, skin. You can relax, though.
Sunday, February 12, 2017
Friday Radiation + Weekend
I feel like I'm a mom of a newborn again, only my body is the newborn I'm trying to keep alive.
Wake up on all hours to keep meds up.
Make sure the baby eats.
Try to get out of bed so as to not become a vegetable.
Stay washed and dressed.
Thank goodness for everyone else for everything else because this is a tough enough job, just trying to keep this 37 year old, 80-year-old, newborn baby alive.
Time for another nap.
Wake up on all hours to keep meds up.
Make sure the baby eats.
Try to get out of bed so as to not become a vegetable.
Stay washed and dressed.
Thank goodness for everyone else for everything else because this is a tough enough job, just trying to keep this 37 year old, 80-year-old, newborn baby alive.
Time for another nap.
Thursday, February 9, 2017
More Radiation
My new radiation time is 9:45, M-F.
This day, Jenn came again.
Overnight was rough.
I was up all night, throwing up, barely able to walk.
There is no telling how I got to boys to school that day, but they got out the door.
I made it to the clinic, but immediately needed a wheelchair. I was now an old woman, not able to walk to move on my own.
After the radiation, I rolled back to Dr. Fleener's office and got fluids and meds.
Then, it was home to try to rest again.
The next day was much the same, me needing a cane to walk, just trying to keep alive.
BTHO Breast Cancer Game
Each season, the Aggie Women's Basketball Team hosts a BTHO Breast Cancer game. Ever since we moved back to BCS, I've seen people wearing the t-shirts and have wanted to attend. (I've even wanted to try to buy past years' shirts because they are always so well done!)
This year's game happened to fall right around the time of my latest diagnosis. I already had tickets for the boys and I to go because it's been on my list for years and this year I was going to get to go out on the court at half time with Pink Alliance!
Fast forward to the actual day of the game. Finding cancer on Friday, the 3rd. A small reprieve over the weekend, thanks for steroids and other drugs, starting radiation the day before and the drugs not able to help the symptoms enough to stop throwing up, nausea, unsteadiness....I wasn't doing well. However, I was asked to be a guest coach for the game, complete with an all-access pass and tour before the game. If I was well enough to stand, we were going to the game. I wanted to make that memory with Stephen and the boys!
We toured the facilities, tried on championship rings, sat in coaches' offices. Then, came the big surprise. We got to attend the pre-game team meeting! I was so impressed listening to the coaches go over game strategies, but the majority of the theme was about the purpose of the game. "We play for something bigger than ourselves. This game is not about us---it's about all those survivors and their families. We play for community and to make a difference in people's lives." Then, it was MY turn! I have no idea what I said or how I even stood up there without feeling or getting sick, but it was pretty cool.
Then, before the game, they called our family up to introduce us!
What a special night and great memories of the Sprit of Aggieland, still strong!!!
Wednesday, February 8, 2017
Radiation
My first radiation treatment was Wednesday afternoon.
I had a scheduled massage that morning.
After that, I got some soup for lunch, but I wasn't feeling great about going to the appointment alone. I called a friend who dropped everything to take me.
She dropped me off to park the car, and I walked in to check in. I rushed to the restroom to throw up, but didn't make it. Made a mess in the hall.
Cooled off in the office to get back to feeling better.
Rolled back to radiation.
Once the headgear was on and set, the whole process only takes 15 seconds on each side.
Because we are doing a full brain radiation, it doesn't take long at all to get the dosage I can take.
I rolled back out to meet with Dr. Goble, but wasn't feeling well at all.
Jenn drove me home, and that ride is hard. I threw up when we got home.
It was a rough day.
Tuesday, February 7, 2017
Meeting with Fleener--Cancelled Herceptin & Perjeta #19
There has been lots of this over the last few days. I feel so broken and sad. There is guilt of knowing that God is a God of miracles and yet not being able to just trust completely that all will be well. I feel trapped between the science and the MRI images--so many tumors!--and the blind faith that there is still hope. Right now I feel hopeless. I'm angry. I feel like I've let down so many people, that I'm leaving my children and spouse much too soon. How could I bring these boys to this world and then just go, especially when there is so much still do to? I feel like they won't remember me, and I've tried so hard to be so much for them--making traditions, being a nurturer, teaching them discipline, and so many other things, yet they are still SO young! How will any of it stick? I know I can still fight and that I am strong, but I am starting to get tired. My head hurts so much, and I've noticed that it's gotten harder to move and stand in just the last few days. I'm scared to lose who I am.
I am also so touched and overwhelmed at the love and outpouring of kindness and prayers for our family. It is incredible to see the far-reaching effects of connections made through our many travels and associations over the years. I have loved seeing that web of love through such a rocky and dark time.
On Tuesday, I went to my regularly scheduled appointment with Dr. Fleener. Stephen surprised me by getting off early and meeting me there! The nurses, office managers, financial ladies, and more came up to hug me and give me some comfort---news travels fast.
There really was no silver lining to the reports today. The hard part about me is that my body was reacting so well to Herceptin and Perjeta and there were no other symptoms until the past week. The PET scan scans from the bottom of the ears to the knees, looking for high glucose areas. It's not the best on the brain because the brain has such high activity all the time.
Dr. Fleener still thinks I have on the longer end of things. She has high hopes that my cancer reacted so well to radiation before. "It just melted away the last time." She hopes that it will work that well again, which will give me a longer end of that spectrum of time. Those averages include people who are in their 70s, coming in in wheelchairs, not healthy at all.
I have a little on that.
She did give me the news that I could skip treatment today, especially since I've never missed one.
I took that as a sign, especially since Stephen was off. We skipped out and went to a movie.
It was a perfect idea.
Monday, February 6, 2017
Goble
Stephen was able to get off work early and meet me at Dr. Goble's office, which was a nice comfort. I was so glad to have company and to not be alone.
I filled out a bit of paperwork, but not much, as I am already an established patient.
I was called back and did the typical stats--weight/BP etc. All that was fine.
I was asked about pain and other symptoms--how's my breathing, stuff like that.
We then moved into the exam room and waited for the doctor. He walked in with a med student, and we said it was fine that he sit in.
Dr. Goble did an exam and questioning. He kept asking about my breathing. He checked my reflexes, my vision, (wanted me to remind him about my eye injury), and checked my strength in pushing against his pressure with arms and legs. All that seemed fine.
Then explained that my MRI results showed tumors....the first I'd heard that word, and that's when it hit me...how real and scary this was. He asked if we wanted to see the MRI, and Stephen piped up, "YES!"
As Dr. Goble was pulling up the files on his computer, he explained that the MRI basically cuts my skull into a "loaf of bread," in all directions, so they can scan through each "slice" and see what's going on.
When the images on the screen came up, and Dr. Goble began scrolling through the "slices," that's when I knew it was bad. Stephen said something like, "MAN!" and just started crying. The tears were rolling down his cheeks, and I knew that MRI was not good. It looked like every slice of my brain loaf had multiple moldy spots...on both sides, and all over.
Dr. Goble was showing how neurosurgery wasn't really an option, as there were too many tumors for surgery to help. We could do radiation and hopefully alleviate some of my symptoms and give me some relief from the headaches and nausea.
Stephen asked how much time I had, and Dr. Goble explained that it was hard to tell at this point because they don't know how I'll respond to radiation, but just from the scans, it would be 6 months to a year.
There's no real hope of a cure....it's just how much time am I going to get.
It's not supposed to be this way!
As Dr. Goble went back with his student in the hall to collect some paperwork, Stephen overheard him tell the student that I have a very aggressive type of cancer.
He came back and explained that I would do full brain radiation for 10 sessions, basically 10 days in a row. Then, they would wait about 6 weeks to let everything process and scan me again. At that point, they'd be able to see if and how well the radiation worked, which would give them a better clue of how to proceed.
The radiation shouldn't have too many damaging effects on my abilities. I will probably just be fatigued. The biggest thing is that I will lose my hair, and this time it probably won't grow back, as it will be fried off.
They will only be radiating my brain, so I won't have problems with my esophagus or other body parts. I also shouldn't have any memory loss or other lessening of brain function, and to help with that, they are starting me on a drug used for dementia patients. It will just give my brain extra protection. I start off on a very low dose and work up to the highest. They will keep me on the steroids, but will eventually start tapering those down to a place where I will still be comfortable, but not so reliant on them. At the same time, the radiation should help with my symptoms, so that should even out.
We asked how this got so bad so fast. He said that it's a great question. A PET scan only shows from the bottom of the ears to the knees. Its job is to scan for high glucose activated cells, which are most likely areas of cancer, which is a main reason why I do a sugar/carb fast for 24 hours prior to the test. The brain has a high level of activity all the time, so a PET scan doesn't differentiate between cancer and normal brain activity. In theory, my body was doing so well in remission with the herceptin and perjeta, and I wasn't having any symptoms, so there was no reason to seek further studies.
Until this week when these symptoms came up, at least.
He didn't think this was here 6 months ago, maybe not even 4 months ago. It's so aggressive, it just came up so quickly, and it finally just started putting so much pressure on my brain and affecting my 4th ventricle, which is what was causing the symptoms.
I could stay that day and get fitted for the radiation mask, which I chose to do.
I went back into another room and had to remove all metal. I laid back on a table and had this wet, hot mold placed over my face. It was hard to breath through and the tears made it hard to endure, as well. We had to let it dry up and fit to my face. Then, I was scanned in order to mark up the mask for the proper placement for radiation. Before too long, she pulled that thing off my face and I was able to leave.
Then, it was time to go home and tell the boys.
That was NOT fun at all.
Kyle was quiet.
Ryan said, "I don't want Mom to die. She's not supposed to die when I'm a kid. She's not supposed to die until I'm an adult and have my own kids. I don't want that to happen."
Evan was kind of clueless. He just kept saying, "Don't cry. Don't cry. If you don't cry, it's all better."
I am so sad that they are all so young and it feels as if they won't remember me. I've tried so hard to be a great mom, but those early years are so important, but fading in the memory as time goes on.
Kyle had soccer practice. I took a bath. I laid in bed an fell asleep. It was a long, hard day.
I filled out a bit of paperwork, but not much, as I am already an established patient.
I was called back and did the typical stats--weight/BP etc. All that was fine.
I was asked about pain and other symptoms--how's my breathing, stuff like that.
We then moved into the exam room and waited for the doctor. He walked in with a med student, and we said it was fine that he sit in.
Dr. Goble did an exam and questioning. He kept asking about my breathing. He checked my reflexes, my vision, (wanted me to remind him about my eye injury), and checked my strength in pushing against his pressure with arms and legs. All that seemed fine.
Then explained that my MRI results showed tumors....the first I'd heard that word, and that's when it hit me...how real and scary this was. He asked if we wanted to see the MRI, and Stephen piped up, "YES!"
As Dr. Goble was pulling up the files on his computer, he explained that the MRI basically cuts my skull into a "loaf of bread," in all directions, so they can scan through each "slice" and see what's going on.
When the images on the screen came up, and Dr. Goble began scrolling through the "slices," that's when I knew it was bad. Stephen said something like, "MAN!" and just started crying. The tears were rolling down his cheeks, and I knew that MRI was not good. It looked like every slice of my brain loaf had multiple moldy spots...on both sides, and all over.
Dr. Goble was showing how neurosurgery wasn't really an option, as there were too many tumors for surgery to help. We could do radiation and hopefully alleviate some of my symptoms and give me some relief from the headaches and nausea.
Stephen asked how much time I had, and Dr. Goble explained that it was hard to tell at this point because they don't know how I'll respond to radiation, but just from the scans, it would be 6 months to a year.
There's no real hope of a cure....it's just how much time am I going to get.
It's not supposed to be this way!
As Dr. Goble went back with his student in the hall to collect some paperwork, Stephen overheard him tell the student that I have a very aggressive type of cancer.
He came back and explained that I would do full brain radiation for 10 sessions, basically 10 days in a row. Then, they would wait about 6 weeks to let everything process and scan me again. At that point, they'd be able to see if and how well the radiation worked, which would give them a better clue of how to proceed.
The radiation shouldn't have too many damaging effects on my abilities. I will probably just be fatigued. The biggest thing is that I will lose my hair, and this time it probably won't grow back, as it will be fried off.
They will only be radiating my brain, so I won't have problems with my esophagus or other body parts. I also shouldn't have any memory loss or other lessening of brain function, and to help with that, they are starting me on a drug used for dementia patients. It will just give my brain extra protection. I start off on a very low dose and work up to the highest. They will keep me on the steroids, but will eventually start tapering those down to a place where I will still be comfortable, but not so reliant on them. At the same time, the radiation should help with my symptoms, so that should even out.
We asked how this got so bad so fast. He said that it's a great question. A PET scan only shows from the bottom of the ears to the knees. Its job is to scan for high glucose activated cells, which are most likely areas of cancer, which is a main reason why I do a sugar/carb fast for 24 hours prior to the test. The brain has a high level of activity all the time, so a PET scan doesn't differentiate between cancer and normal brain activity. In theory, my body was doing so well in remission with the herceptin and perjeta, and I wasn't having any symptoms, so there was no reason to seek further studies.
Until this week when these symptoms came up, at least.
He didn't think this was here 6 months ago, maybe not even 4 months ago. It's so aggressive, it just came up so quickly, and it finally just started putting so much pressure on my brain and affecting my 4th ventricle, which is what was causing the symptoms.
I could stay that day and get fitted for the radiation mask, which I chose to do.
I went back into another room and had to remove all metal. I laid back on a table and had this wet, hot mold placed over my face. It was hard to breath through and the tears made it hard to endure, as well. We had to let it dry up and fit to my face. Then, I was scanned in order to mark up the mask for the proper placement for radiation. Before too long, she pulled that thing off my face and I was able to leave.
Then, it was time to go home and tell the boys.
That was NOT fun at all.
Kyle was quiet.
Ryan said, "I don't want Mom to die. She's not supposed to die when I'm a kid. She's not supposed to die until I'm an adult and have my own kids. I don't want that to happen."
Evan was kind of clueless. He just kept saying, "Don't cry. Don't cry. If you don't cry, it's all better."
I am so sad that they are all so young and it feels as if they won't remember me. I've tried so hard to be a great mom, but those early years are so important, but fading in the memory as time goes on.
Kyle had soccer practice. I took a bath. I laid in bed an fell asleep. It was a long, hard day.
Friday, February 3, 2017
More Fluids and MRI
The week of the PET scan didn't get any better. I kept having headaches and only felt well when lying down. I threw up in the car rider line at school and had to sit in the school's nurse's office until I regained color and felt better. (A lovely 4th grade teacher took Evan to her class, so he was entertained!)
By Friday, things were not getting better, so I decided to drive down to Dr. Fleener's office and report to the nurses in order to get more fluids and talk about my symptoms before it got so bad over the weekend that I ended up in the ER.
After talking with Dr. Fleener, it was decided that I'd get fluids and having an MRI that day. I wasn't sure that was going to work, as Evan has a short day at preschool on Fridays, but there the nurses insisted that an MRI was happening that day.
I sat in the chair, crying and tired. Not sure what was wrong with me....just so tired.
My in-laws were able to pick up Evan and hang out with him for a few hours until the older boys got home from school.
I got some fluids, and the nurses used the right needle for my port that could also be used for the MRI contrast, so I didn't have to get another IV. (LOVE THEM!)
I headed down to the imaging center and waited to be called back.
At first, the tech wasn't sure she could use the needle through my port. I insisted she could and that I did NOT want an IV. Thankfully, she checked with the senior tech, who was happy to report that my port could be used---they just needed to pull out a bit more blood before collecting the real sample AND they had to go over to the ER to get Heparin to keep it from clotting up. (I'd probably get an ER charge for that....thanks.)
The MRI was fine and had no problems until they informed me that they could no remove that needle from my port, as they aren't trained for that. And, Dr. Fleener's office was closed, so I couldn't go back there. I immediately thought of texting Stephen to see if I could just come up to the OR and have some nurse remove it at his hospital. He said, "sure."
I hadn't eaten any lunch, and it was 2:15 at this point.
As I was waiting in the drive-thru lane, Dr. Fleener called. Like, 15 minutes after I got out of the imaging center. It couldn't be good.
She explained that the radiologist just called to tell her of the report of my MRI, and it wasn't good. There were several spots in my brain that looked abnormal, most likely cancer.
"Lovely," I responded.
"I used a much worse word when I heard the news, so you're better than I am!" she explained.
She set me up for an appointment with Dr. Goble, the radiation oncologist I worked with before.
She also sent in a steroid for me to take to hopefully help with the headaches and pressure.
I looked at the time, and realized that I wouldn't make it in time to get my older boys from school, so I called my friend to see if she could walk with them and explained why. It wasn't easy saying it out loud.
At this point, I texted Stephen back about taking the needle out, and asked if he could do it because I needed to talk to him.
Right after that, our bishop texted me saying that he'd been thinking about us all week and did I have any news (good or bad) from the tests.
I responded that I'd just gotten off the phone with my doctor 13 minutes ago and that there is cancer in my brain.
He apologized for texting so soon after hearing bad news, but the first thought that came to my mind was a testimony of the mantle of bishop that he has, especially after just being called to be a brand new bishop. He was sensitive to some of my most personal needs and followed that prompting to reach out. Since I hadn't even told Stephen or family yet, I figured I needed to take care of that first.
I called my mom on the way to Stephen's hospital, but got voicemail.
Stephen met me at the door and I told him immediately.
"Great," he said. "Like we don't have anything else to worry about, we'll just keep fighting this."
He pulled the needle out and had to get back to work.
Then came the hard part of telling people and crying and not being able to tell people because I was crying.
I had to pick up my meds, but just wanted to go home and not have to think about it.
It was a hard night, but at that point I had some hope that maybe we caught this early and there would be a treatment that could beat it back.
I'd find out more on Monday, and Dr. Fleener was on call all weekend if I needed her.
She did say that she could admit me to the hospital if I felt that this was that much of an emergency, but I felt it was fine to wait until Monday.
It was a long Saturday and Sunday, but there were lots and lots of prayers sent up on our behalf, our entire church family participating in a special fast for us, as well as wearing pink in support.
By Friday, things were not getting better, so I decided to drive down to Dr. Fleener's office and report to the nurses in order to get more fluids and talk about my symptoms before it got so bad over the weekend that I ended up in the ER.
After talking with Dr. Fleener, it was decided that I'd get fluids and having an MRI that day. I wasn't sure that was going to work, as Evan has a short day at preschool on Fridays, but there the nurses insisted that an MRI was happening that day.
I sat in the chair, crying and tired. Not sure what was wrong with me....just so tired.
My in-laws were able to pick up Evan and hang out with him for a few hours until the older boys got home from school.
I got some fluids, and the nurses used the right needle for my port that could also be used for the MRI contrast, so I didn't have to get another IV. (LOVE THEM!)
I headed down to the imaging center and waited to be called back.
At first, the tech wasn't sure she could use the needle through my port. I insisted she could and that I did NOT want an IV. Thankfully, she checked with the senior tech, who was happy to report that my port could be used---they just needed to pull out a bit more blood before collecting the real sample AND they had to go over to the ER to get Heparin to keep it from clotting up. (I'd probably get an ER charge for that....thanks.)
The MRI was fine and had no problems until they informed me that they could no remove that needle from my port, as they aren't trained for that. And, Dr. Fleener's office was closed, so I couldn't go back there. I immediately thought of texting Stephen to see if I could just come up to the OR and have some nurse remove it at his hospital. He said, "sure."
I hadn't eaten any lunch, and it was 2:15 at this point.
As I was waiting in the drive-thru lane, Dr. Fleener called. Like, 15 minutes after I got out of the imaging center. It couldn't be good.
She explained that the radiologist just called to tell her of the report of my MRI, and it wasn't good. There were several spots in my brain that looked abnormal, most likely cancer.
"Lovely," I responded.
"I used a much worse word when I heard the news, so you're better than I am!" she explained.
She set me up for an appointment with Dr. Goble, the radiation oncologist I worked with before.
She also sent in a steroid for me to take to hopefully help with the headaches and pressure.
I looked at the time, and realized that I wouldn't make it in time to get my older boys from school, so I called my friend to see if she could walk with them and explained why. It wasn't easy saying it out loud.
At this point, I texted Stephen back about taking the needle out, and asked if he could do it because I needed to talk to him.
Right after that, our bishop texted me saying that he'd been thinking about us all week and did I have any news (good or bad) from the tests.
I responded that I'd just gotten off the phone with my doctor 13 minutes ago and that there is cancer in my brain.
He apologized for texting so soon after hearing bad news, but the first thought that came to my mind was a testimony of the mantle of bishop that he has, especially after just being called to be a brand new bishop. He was sensitive to some of my most personal needs and followed that prompting to reach out. Since I hadn't even told Stephen or family yet, I figured I needed to take care of that first.
I called my mom on the way to Stephen's hospital, but got voicemail.
Stephen met me at the door and I told him immediately.
"Great," he said. "Like we don't have anything else to worry about, we'll just keep fighting this."
He pulled the needle out and had to get back to work.
Then came the hard part of telling people and crying and not being able to tell people because I was crying.
I had to pick up my meds, but just wanted to go home and not have to think about it.
It was a hard night, but at that point I had some hope that maybe we caught this early and there would be a treatment that could beat it back.
I'd find out more on Monday, and Dr. Fleener was on call all weekend if I needed her.
She did say that she could admit me to the hospital if I felt that this was that much of an emergency, but I felt it was fine to wait until Monday.
It was a long Saturday and Sunday, but there were lots and lots of prayers sent up on our behalf, our entire church family participating in a special fast for us, as well as wearing pink in support.
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