Yeah, I have brain cancer.
Since I ended up in the hospital with a post-op infection just 2 days into my chemo/radiation, a lot has happened.
I needed a surgical procedure to clean out the infection. That meant another almost week in the hospital. We found out that I'm allergic to TWO different antibiotics.
I got sent home with a PICC line so that The Husband could give me my IV antibiotics at home. I was still having an allergic reaction to the oral antibiotic I was also taking. Essentially, I was a miserable mess, and honestly, I couldn't bring myself to do anything beyond take benadryl for the itching and sleep the rest of the days away.
I ended up back in the hospital (for the THIRD time) because my hand swelled up so much that it looked like I was wearing a boxing glove. They were worried I had a blood clot in my arm as a result of the PICC line. It was not a clot, but there was enough inflammation and swelling that they decided it was safer to remove the PICC line and just keep me in the hospital to administer the rest of the course of IV antibiotics.
Keep in mind, I found out my diagnosis on June 27. It has been just over a month. That is not a lot of time. I barely had time to start my chemo/radiation before the complications started piling up.
From the beginning, I wanted to be sure that I was still ME. That I was more than just that Cancer Lady. That I was More than my Diagnosis.
The truly frustrating part has been that I haven't even had the time to be more than my diagnosis, because these complications have stacked up so quickly. I've barely socialized. I haven't read a single book since this started. I haven't done anything besides be in and out of the hospital.
Do you know how boring it is to be in the hospital?
Please don't get me wrong: I do NOT want to have an exciting hospital stay, because I imagine excitement means that something went wrong. Nonetheless, when the single only reason I'm here is for IV antibiotics, there's not a whole lot else to do.
I still get tired easily, but that's the nature of recovering from brain surgery (twice). Since I can't really start treatment for the actual cancer, there is not much else to do besides wait for the antibiotics.
The weird part is that, overall, I feel pretty okay. The occasional headache, but that's to be expected when people have been all up in my brains. I don't feel like I have cancer. I don't feel like I have an infection. I don't feel like I have anything. It's disconcerting being in a hospital when you don't feel particularly sick. So, since all I seem to do is wait, that's all I'm doing for now.
Just you wait.
July 31, 2019
July 30, 2019
By the Numbers
Here are some numbers about my life right now:
3: Hospital stays
2: Different hospitals
17: Days in the hospital
2: Brain surgeries
1: Gross brain tumor
1: Infection in and around my brains
2: Allergic reactions to antibiotics
1: layer of skin scratched off from the allergic reactions
1: Suspected clot in my arm
0: Actual clots in my arm
1: Phlebitis in my arm
?: Number of crappy hospital meals
7: Visitors in the hospital (not all at once, of course)
4: Times per night that I get woken up by night shift
6?: Prescription medications I take every day
2?: Weeks until I restart chemo/radiation
2: More doses of IV antibiotics
1: Day until I get released from this hospital!
Okay, that's the best I've got for now. More later!
3: Hospital stays
2: Different hospitals
17: Days in the hospital
2: Brain surgeries
1: Gross brain tumor
1: Infection in and around my brains
2: Allergic reactions to antibiotics
1: layer of skin scratched off from the allergic reactions
1: Suspected clot in my arm
0: Actual clots in my arm
1: Phlebitis in my arm
?: Number of crappy hospital meals
7: Visitors in the hospital (not all at once, of course)
4: Times per night that I get woken up by night shift
6?: Prescription medications I take every day
2?: Weeks until I restart chemo/radiation
2: More doses of IV antibiotics
1: Day until I get released from this hospital!
Okay, that's the best I've got for now. More later!
July 21, 2019
All Things Considered, A Good Day
So.
I have been in the hospital since Wednesday? I think. What I thought was a minor infection turned out to be something a little more serious.
The neurosurgeon did a procedure to clean the infection out of my incision. I've been on IV antibiotics and under close observation for the last several days. The chemo and radiation are on hold until the infection is under control
As you may have seen, my previous post was about a bad day, and many of the subsequent days have also been bad. I was in pain. Poked and prodded. Tired and sleep deprived. Having adverse reactions to antibiotics. Overall, just having a hard time of it all. I knew that this diagnosis meant that my life would have unexpected speed bumps. It somehow never occurred to me that I would hit a speed bump like this when we've barely gotten out of the driveway. It would actually be more accurate if we called it a brick wall across the driveway: how do you even start rolling?
The thing is, being in the hospital, the infection seems to be responding to the IV antibiotics. I feel a little better. The medical staff here are amazing, even when I've been incredibly cranky. The Husband has been by my side this whole time, and very kindly getting me anything and everything I want to eat, even though my appetite has been an unpredictable mess.
Even though my condition has improved, I have to admit that I had to face some deep fears. In my life, I have enjoyed doing many things that scare me (not that I'm a daredevil, but a little adventure never hurt anyone). I have gone skydiving, taken helicopter rides, snorkeled with manatees, presented at conferences, ziplined, and touched jellyfish. After all of that, being admitted to the hospital this time meant that I had to acknowledge that my deepest fear was that they would do a scan and find that my tumor came back. This might not be a rational fear, but you and I both know that fears are rarely rational.
So they did a scan to check on the infection. While the infection was concerning, the incredibly good news was that the site where the rockstar neurosurgeon took out the tumor looks just like it did immediately post-op. This is incredibly good news.
My deepest fear was unfounded. Of all things I'm afraid of, for now, this is one I can set to the side. I cannot explain how much of a relief that was.
Today, I actually felt better. Closer to resembling myself. My energy was better.
Frankly, now, I'm finally ready to get the heck home. I can do this.
It was a setback, and sitting in a hospital for 5 days is a heck of a way to adjust my attitude. I thought I could just strong-arm my way through this, but then I didn't know what to do when I wasn't feeling strong. I had to remind myself that sometimes, strength is not about ignoring the fear, but about refusing to let the fear control me. My fear of heights didn't stop me from skydiving. My fear of large wild sea animals didn't stop me from snorkeling with manatees. My fear of public speaking didn't stop me from presenting at a conference. And my fear of this diagnosis will not stop me from fighting.
So, today I drew strength from the support of The Husband. I drew strength from my close friends who have been keeping up with me through text and occasional phone calls. I drew strength from visitors (old friends and new friends alike) who reminded me that even though this diagnosis sucks, there is so much more to me than this.
I can do this. It may just be the first of many setbacks, but the reality is that I've accomplished so many things out of sheer force of will. This will just be another one of those things.
July 16, 2019
Day 2: The Truth is Hard
I'm writing this before my chemo and radiation treatments, because the truth is that yesterday was hard, and today is hard. I've been putting on the strong face and trying to stay in good spirits, but keep in mind that I had brain surgery just about a month ago and got my diagnosis just about two weeks ago. To go from the shock of that diagnosis to chemo/radiation while still recovering from brain surgery with an incision that still hurts and a head that still hurts is a lot.
The thing is, recovering from brain surgery is just awful. I've had very minor physical or cognitive deficits that anyone would notice. I had a little trouble mixing up words at first, but that seems to have improved. Mostly, it's just that my attention span has dwindled so much that I feel like I can barely focus on anything. So, because I have felt almost but not quite myself since the surgery, I've been working on my neuroplasticity. To exercise my brain, I've been playing Words With Friends 2, and I've been practicing my Spanish and Italian in Duolingo. It's not much, but it's making me work in a way that seems to be helping.
The truth, though, is that it has been rough. This strong face can only stay on for so long before the mask cracks and the truth leaks out.
Today, I didn't want to get out of bed. I didn't want to be cancer-lady. I wanted to go back to my regular life; it was certainly not perfect, but it was mine. I feel like I've lost control. Maybe I need to accept that certain things are just outside of my control, but it's been two weeks since I found out my diagnosis. That is hardly enough time to become accustomed to anything. I am still more than my diagnosis, but some days, it is harder to remind myself of that.
And I haven't even had my treatment, yet.
Tomorrow will be better. Tomorrow must be better.
The thing is, recovering from brain surgery is just awful. I've had very minor physical or cognitive deficits that anyone would notice. I had a little trouble mixing up words at first, but that seems to have improved. Mostly, it's just that my attention span has dwindled so much that I feel like I can barely focus on anything. So, because I have felt almost but not quite myself since the surgery, I've been working on my neuroplasticity. To exercise my brain, I've been playing Words With Friends 2, and I've been practicing my Spanish and Italian in Duolingo. It's not much, but it's making me work in a way that seems to be helping.
The truth, though, is that it has been rough. This strong face can only stay on for so long before the mask cracks and the truth leaks out.
Today, I didn't want to get out of bed. I didn't want to be cancer-lady. I wanted to go back to my regular life; it was certainly not perfect, but it was mine. I feel like I've lost control. Maybe I need to accept that certain things are just outside of my control, but it's been two weeks since I found out my diagnosis. That is hardly enough time to become accustomed to anything. I am still more than my diagnosis, but some days, it is harder to remind myself of that.
And I haven't even had my treatment, yet.
Tomorrow will be better. Tomorrow must be better.
July 15, 2019
Day 1 is Done: Overwhelmed
First day of chemo and radiation is done.
I don't want to sit here and bemoan the nausea, the headache, or any of the other unpleasantness. Instead, I will say that the first treatment went exactly as planned. The radiation therapists and radiation oncologist were all pleased with the way things went, and I actually got out of there just a little faster than initially anticipated because things went so well.
I really don't know what else to say. I've been overwhelmed by the generosity of family, friends, coworkers, and so many others in the community. The support from all of you has meant so much to me. It's so rare that I am speechless, yet here I am, completely at a loss of words.
So many of you are reaching out to me through texts, fb comments and messenger, comments here, and every other way. I am overwhelmed by your kindness and support. I want you all to know that I am getting your messages, and I promise that I am not ignoring you.
For now, I will update as often as I can, but more than anything else, I am resting as much as I can.
Thank you again, all of you, for your support.
If you want to help me, here are some things that I could use:
My Amazon Wish List: There are gift cards listed here because any amount will help pay for gas or groceries.
My Second Amazon Wish List: These are comfort items, things that I think will help make me more comfortable over the next several weeks that I will be home. These things might not necessarily be needed, but will absolutely help keep me positive and prepared to fight.
My CashApp: I hate to even ask, but if you are willing and able to donate any amount at all, it would help me pay for gas, groceries, and other necessities, especially while I am not working.
Right now, we are still considering creating a GoFundMe, if we do so, any help in spreading the word will be greatly appreciated.
I don't want to sit here and bemoan the nausea, the headache, or any of the other unpleasantness. Instead, I will say that the first treatment went exactly as planned. The radiation therapists and radiation oncologist were all pleased with the way things went, and I actually got out of there just a little faster than initially anticipated because things went so well.
I really don't know what else to say. I've been overwhelmed by the generosity of family, friends, coworkers, and so many others in the community. The support from all of you has meant so much to me. It's so rare that I am speechless, yet here I am, completely at a loss of words.
So many of you are reaching out to me through texts, fb comments and messenger, comments here, and every other way. I am overwhelmed by your kindness and support. I want you all to know that I am getting your messages, and I promise that I am not ignoring you.
For now, I will update as often as I can, but more than anything else, I am resting as much as I can.
Thank you again, all of you, for your support.
If you want to help me, here are some things that I could use:
My Amazon Wish List: There are gift cards listed here because any amount will help pay for gas or groceries.
My Second Amazon Wish List: These are comfort items, things that I think will help make me more comfortable over the next several weeks that I will be home. These things might not necessarily be needed, but will absolutely help keep me positive and prepared to fight.
- In this second wish list, you might notice many Wonder Woman items. I am drawing strength and confidence from Wonder Woman, and will be wearing something with her logo on it every single day of my treatment. It may seem silly, but these little symbols help me.
My CashApp: I hate to even ask, but if you are willing and able to donate any amount at all, it would help me pay for gas, groceries, and other necessities, especially while I am not working.
Right now, we are still considering creating a GoFundMe, if we do so, any help in spreading the word will be greatly appreciated.
July 12, 2019
The News is Out There
There is an undeniable sense of relief in having the news out there.
Four weeks ago, that rockstar neurosurgeon was cutting into my head with the kind of confidence that only a rockstar neurosurgeon can have. Two weeks ago, I was getting my staples out. As soon as those staples came out, just like ripping off a bandaid, I got my diagnosis.
So much of that first week was a blur of shock and tears and rage. To say that I never expected this diagnosis is the ultimate understatement. I don't want to admit how many meltdowns I had, and I definitely don't want to say how much time I spent crying. But, eventually, the shock wore off, the tears dried, and the rage turned to... I don't want to say peace or acceptance; it turned to that moment where I braced myself so that I could draw from every reserve of strength I have in the deepest and most private corners of my heart.
I spent the last week recovering, both from the shock of the diagnosis, and, oh yeah, brain surgery. The hardest part of it all was dealing with a body that was too tired to really do anything, and a spirit that was too afraid. This is the second hardest part to admit: I have so much fear that I am fighting to overcome. Some days, I feel ready. Most days, I am just scared.
The thing is, the fear isn't gone. I'm still afraid. On Monday, radiation therapists will aim a beam of radiation at my brain, and you know what? That is terrifying. There is no getting around that, and I feel like it is completely fair to be scared.
What I do know is that the fear is relieved by the fact that I don't have to feel like I'm keeping some terrible secret. The news is out there: I have cancer.
So, there it is.
If you want to help me, here are some things that I could use:
My Amazon Wish List: These are items that I need to help me prepare for these treatments. Because all of this happened so quickly after moving into a new house, some of the items on this list are specifically to help make the house comfortable, especially because I will be home and not working for at least the next six weeks, and traveling 30 miles for radiation five days a week. There are also gift cards listed here because any amount will help pay for gas or groceries.
My Second Amazon Wish List: These are comfort items, things that I think will help make me more comfortable over the next several weeks that I will be home. These things might not necessarily be needed, but will absolutely help keep me positive and prepared to fight.
My CashApp: I hate to even ask, but if you are willing and able to donate any amount at all, it would help me pay for gas, groceries, and other necessities, especially while I am not working.
Right now, we are still considering creating a GoFundMe, if we do so, any help in spreading the word will be greatly appreciated.
Four weeks ago, that rockstar neurosurgeon was cutting into my head with the kind of confidence that only a rockstar neurosurgeon can have. Two weeks ago, I was getting my staples out. As soon as those staples came out, just like ripping off a bandaid, I got my diagnosis.
So much of that first week was a blur of shock and tears and rage. To say that I never expected this diagnosis is the ultimate understatement. I don't want to admit how many meltdowns I had, and I definitely don't want to say how much time I spent crying. But, eventually, the shock wore off, the tears dried, and the rage turned to... I don't want to say peace or acceptance; it turned to that moment where I braced myself so that I could draw from every reserve of strength I have in the deepest and most private corners of my heart.
I spent the last week recovering, both from the shock of the diagnosis, and, oh yeah, brain surgery. The hardest part of it all was dealing with a body that was too tired to really do anything, and a spirit that was too afraid. This is the second hardest part to admit: I have so much fear that I am fighting to overcome. Some days, I feel ready. Most days, I am just scared.
The thing is, the fear isn't gone. I'm still afraid. On Monday, radiation therapists will aim a beam of radiation at my brain, and you know what? That is terrifying. There is no getting around that, and I feel like it is completely fair to be scared.
What I do know is that the fear is relieved by the fact that I don't have to feel like I'm keeping some terrible secret. The news is out there: I have cancer.
So, there it is.
If you want to help me, here are some things that I could use:
My Amazon Wish List: These are items that I need to help me prepare for these treatments. Because all of this happened so quickly after moving into a new house, some of the items on this list are specifically to help make the house comfortable, especially because I will be home and not working for at least the next six weeks, and traveling 30 miles for radiation five days a week. There are also gift cards listed here because any amount will help pay for gas or groceries.
My Second Amazon Wish List: These are comfort items, things that I think will help make me more comfortable over the next several weeks that I will be home. These things might not necessarily be needed, but will absolutely help keep me positive and prepared to fight.
- In this second wish list, you might notice many Wonder Woman items. I am drawing strength and confidence from Wonder Woman, and will be wearing something with her logo on it every single day of my treatment. It may seem silly, but these little symbols help me.
My CashApp: I hate to even ask, but if you are willing and able to donate any amount at all, it would help me pay for gas, groceries, and other necessities, especially while I am not working.
Right now, we are still considering creating a GoFundMe, if we do so, any help in spreading the word will be greatly appreciated.
July 11, 2019
READ THIS FIRST: Brain Surgery Updates and Important News
I have important news to share. Some of you have heard this from me, but I have found that the stress of sharing this information one at a time is too much, so it's time to rip off the bandaid and share it this way.
The good news:
My brain surgery went extremely well. The neurosurgeon is a rockstar, and it looks like he got pretty close to 100% of the brain tumor out. My staples are out, and I am still home recovering, which mostly involves sleeping the majority of the day.
The bad news:
The pathology came back. I have brain cancer. Chemo and radiation start on Monday for 6 weeks.
More good news:
Because of my age, my health, and the fact that I have not had any seizures, the oncology team is confident that I can fight this. And I will fight this.
Finally, the Important News:
Right now, I am preparing for the fight of my life. I am working so hard to take care of my mental, spiritual, and physical health, and what this means is that I am having to be very strict about my boundaries. My family and friends: I love you all so much, and I so appreciate all of those offers for help, for visits, for everything that you have offered me. At this point, because I am still recovering from the surgery while also dealing with this traumatic news, I am limiting visits and phone calls. If you want to reach out to me, you can comment here, find me on FB, or even drop me a text message.
If you want to help me, here are some things that I could use:
My Amazon Wish List: These are items that I need to help me prepare for these treatments. Because all of this happened so quickly after moving into a new house, some of the items on this list are specifically to help make the house comfortable, especially because I will be home and not working for at least the next six weeks. There are also gift cards listed here because any amount will help pay for gas or groceries. The Husband will be driving me 30 miles each way to radiation five days a week. This means that these treatments will cost me at least two tanks of gas a week to get back and forth for my appointments.
My Second Amazon Wish List: These are comfort items, things that I think will help make me more comfortable over the next several weeks that I will be home. These things might not necessarily be needed, but will absolutely help keep me positive and prepared to fight.
My CashApp: I hate to even ask, but if you are willing and able to donate any amount at all, it would help me pay for gas, groceries, and other necessities, especially while I am not working.
Right now, we are still considering creating a GoFundMe, if we do so, any help in spreading the word will be greatly appreciated.
This has been an incredibly stressful month, from having a weird headache to suddenly needing brain surgery and finding out my diagnosis, but I wanted everyone to hear from me.
I am more than my diagnosis. I do not want to be known as the brain cancer lady. I am still me: tell me corny jokes - tell me about your day - recommend good books and fun movies! If you reach out to me, remember that spreading positivity will make me feel much stronger in this fight, and hearing sad noises from people will only make it harder for me to stay strong.
Ultimately, I know that it is hard to get this news this way. Unfortunately, every individual conversation about my diagnosis makes me emotional and the stress is just not good for my mental health. I can't cry about this anymore. I understand if you want to cry, but remember - I am fighting this, and I am more than my diagnosis.
The good news:
My brain surgery went extremely well. The neurosurgeon is a rockstar, and it looks like he got pretty close to 100% of the brain tumor out. My staples are out, and I am still home recovering, which mostly involves sleeping the majority of the day.
The bad news:
The pathology came back. I have brain cancer. Chemo and radiation start on Monday for 6 weeks.
More good news:
Because of my age, my health, and the fact that I have not had any seizures, the oncology team is confident that I can fight this. And I will fight this.
Finally, the Important News:
Right now, I am preparing for the fight of my life. I am working so hard to take care of my mental, spiritual, and physical health, and what this means is that I am having to be very strict about my boundaries. My family and friends: I love you all so much, and I so appreciate all of those offers for help, for visits, for everything that you have offered me. At this point, because I am still recovering from the surgery while also dealing with this traumatic news, I am limiting visits and phone calls. If you want to reach out to me, you can comment here, find me on FB, or even drop me a text message.
If you want to help me, here are some things that I could use:
My Amazon Wish List: These are items that I need to help me prepare for these treatments. Because all of this happened so quickly after moving into a new house, some of the items on this list are specifically to help make the house comfortable, especially because I will be home and not working for at least the next six weeks. There are also gift cards listed here because any amount will help pay for gas or groceries. The Husband will be driving me 30 miles each way to radiation five days a week. This means that these treatments will cost me at least two tanks of gas a week to get back and forth for my appointments.
My Second Amazon Wish List: These are comfort items, things that I think will help make me more comfortable over the next several weeks that I will be home. These things might not necessarily be needed, but will absolutely help keep me positive and prepared to fight.
My CashApp: I hate to even ask, but if you are willing and able to donate any amount at all, it would help me pay for gas, groceries, and other necessities, especially while I am not working.
Right now, we are still considering creating a GoFundMe, if we do so, any help in spreading the word will be greatly appreciated.
This has been an incredibly stressful month, from having a weird headache to suddenly needing brain surgery and finding out my diagnosis, but I wanted everyone to hear from me.
I am more than my diagnosis. I do not want to be known as the brain cancer lady. I am still me: tell me corny jokes - tell me about your day - recommend good books and fun movies! If you reach out to me, remember that spreading positivity will make me feel much stronger in this fight, and hearing sad noises from people will only make it harder for me to stay strong.
Ultimately, I know that it is hard to get this news this way. Unfortunately, every individual conversation about my diagnosis makes me emotional and the stress is just not good for my mental health. I can't cry about this anymore. I understand if you want to cry, but remember - I am fighting this, and I am more than my diagnosis.
Subscribe to:
Posts (Atom)