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.
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!!!
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.
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.
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.
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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