I wasn't expecting it so soon, but I'm already feeling fatigue from the treatments. Today was my 8th radiation and I started the 2nd week of chemo yesterday. The oncologist said fatigue during second week is normal. Yesterday, I was really dragging to get myself to the radiation appointment and was doing the "Stay awake! Almost home and then you can nap!" thinking on the drive home. I slept for 3 hours after that. Then I went to bed pretty easily right on time, but when I got up to pee at 1am, I couldn't go back to sleep for 5 hours!! And Ellie cried at 5am, so I think I got a total of 3.5 hours of broken sleep last night.
Thankfully, our nanny (and her helper Ellie) was ready to give me a ride to treatment today and I can sleep whenever I need to until 4pm. I'm thankful my short term disability is still active for a while and we're getting somewhere with long term disability. I don't know how people can work through this fatigue.
The nausea is still manageable. I've tried to forgo the anti-nausea meds and end up needing it around lunch time. Sometimes I have a hard time falling asleep at night from the nausea, but the meds do help. I've decided to treat myself to something on Fridays just as a thing to look forward to and patting myself on the back for another week. Last Friday was Starbucks coffee and scone. This week will be a new lounge outfit. I think I may have written about this idea before but can't remember without going back to read it... "chemo brain" has replaced "mommy brain" lately. Thank goodness for alarms and lists on the smart phone.
I am still trying to exercise. I walk the kids to school every morning which is about .6 miles round trip. I do that twice if I pick them up in the afternoon, which I only *have* to do on Mondays but can send Ellie and Constance in the afternoon the rest of the week if I'm not up for it. It's been REALLY hot a few days this week so everyone comes home red faced and ready for drinks/snacks. No tears on the first day of school, not for them and not for me. I'm glad they like it! They are tired though, Liam was laying around on the floor this morning until we left and Grace slept on the floor of their room last night.
I've been doing more crochet. I am about to finish my second hat. I got all the way through before I realized I was doing a triple stitch instead of the double stitch that the pattern called for. Oh well, I'm not going to undo it all. It'll just be a little longer. It was a slouch hat pattern anyway.
Wednesday, August 28, 2013
Monday, August 26, 2013
First week over
Friday last week marked the first week of radiation finished. That was 5 in a row, with 25 more to go. Because of Labor Day Monday being off next week, my radiation will continue to 6.5 weeks instead of the normal 6, cause we have to get up to 30 treatments. Radiation is going alright so far. I have a little tenderness in my surgery scar, but I can't tell if that's normal healing or being aggravated by the radiation. The procedures don't take long, about 20 minutes from in the door to out as long as I don't get there too early and end up waiting. Laying on the table is like 5-6 minutes.
Tomorrow will be the official start of the second week of chemo (since I started on a Tuesday). That's not been too terrible so far either. I do get some nausea. It reminds me of morning sickness. I will get about 3/4ths of the way through a meal and then not be able to finish it. And of course, it's the worst right at bedtime. There's been a few nights when I take all the anti nausea meds in my arsenal, and antacids, and spend a couple hours sitting upright in bed to try to fall asleep. I feel badly for Charles more than me since he gets up at the ass crack of dawn to go to work so getting to sleep on time is more important for him.
Charles' 30th birthday was on Saturday and we had a party at a local park. That turned out well. I was impressed by myself to get it all together, run errands, set up, clean up, etc. We got to see a few people we haven't seen in a while, meet a couple babies we hadn't met yet, and generally have a good time to celebrate my best friend and partner.
I got my hair trimmed up again over the weekend too. I went to the cheapo Hair Cuttery since I didn't really care if they butchered it. I just needed it shorter since it'll fall out in patches and I didn't want the rest of the hair that stays to get unruly. They actually did a decent job for a $16 cut (keep in mind I paid $65 for the first chop I did). I even took Grace back there for a kid cut yesterday before school today.
Speaking of school, the bigs are there right now. First day drop off went really well, no tears (while I was there). They were just excited to get in there which is what we were hoping for. We'll see how the day goes and then this first week. I imagine it's really hard on the kindergartners to go full days for a full week to start. 3 day week next week though since the MCPS calendar has so many holidays in it.
Overall, we've all had a good week, despite the circumstances. I've decided I'm doing little treats for myself on Fridays to celebrate another week over. Last Friday it was coffee and a scone from Starbucks. This Friday, I want to get another "lounge around the house" outfit. You know, the comfy kind you would barely let your mother see you in...
Tomorrow will be the official start of the second week of chemo (since I started on a Tuesday). That's not been too terrible so far either. I do get some nausea. It reminds me of morning sickness. I will get about 3/4ths of the way through a meal and then not be able to finish it. And of course, it's the worst right at bedtime. There's been a few nights when I take all the anti nausea meds in my arsenal, and antacids, and spend a couple hours sitting upright in bed to try to fall asleep. I feel badly for Charles more than me since he gets up at the ass crack of dawn to go to work so getting to sleep on time is more important for him.
Charles' 30th birthday was on Saturday and we had a party at a local park. That turned out well. I was impressed by myself to get it all together, run errands, set up, clean up, etc. We got to see a few people we haven't seen in a while, meet a couple babies we hadn't met yet, and generally have a good time to celebrate my best friend and partner.
I got my hair trimmed up again over the weekend too. I went to the cheapo Hair Cuttery since I didn't really care if they butchered it. I just needed it shorter since it'll fall out in patches and I didn't want the rest of the hair that stays to get unruly. They actually did a decent job for a $16 cut (keep in mind I paid $65 for the first chop I did). I even took Grace back there for a kid cut yesterday before school today.
Speaking of school, the bigs are there right now. First day drop off went really well, no tears (while I was there). They were just excited to get in there which is what we were hoping for. We'll see how the day goes and then this first week. I imagine it's really hard on the kindergartners to go full days for a full week to start. 3 day week next week though since the MCPS calendar has so many holidays in it.
Overall, we've all had a good week, despite the circumstances. I've decided I'm doing little treats for myself on Fridays to celebrate another week over. Last Friday it was coffee and a scone from Starbucks. This Friday, I want to get another "lounge around the house" outfit. You know, the comfy kind you would barely let your mother see you in...
Thursday, August 22, 2013
Nausea and Frustration
Treatments are going well so far. I'm able to drive myself to and from the office. They only last like 10 minutes start to finish. I take my chemo pill about an hour before I go and the anti-nausea med an hour before that.
Last night I have my first real bout with the nausea. Every time I laid down, I felt like I had heartburn and nausea together. I took all 3 of the prescription meds I have for that, ate a handful of crackers, and then propped myself up. I was finally able to go to sleep after a little while listening to music. They basically said to treat this like morning sickness (also all day, like during pregnancy), so frequent small meals etc.
I got the official final report from last week's MRI but I have NO idea what it means, so I have to wait until I see the oncologist on Tuesday to figure out what it actually means.
This week has been frustrating for my crocheting. My first hat was way too small, like baby head small. And when I went to unravel it, it got a knot in it and I had to cut it. Then today I started an open weave sun hat. On the 8th start, I finally got it. I knew it might be a little difficult to do this fine motor stuff I used to, but I wasn't expecting a learning curve like this.
Open house tomorrow for the kids to meet their new teacher. I should be able to make it to the end of it. Charles will take them first, the nanny will meet halfway through (since the teacher should know her too), and then I'll be there at the end. I can't believe they start full time on Monday. That reminds me that we forgot to tear off the "Thursday" chain for their countdown.
Last night I have my first real bout with the nausea. Every time I laid down, I felt like I had heartburn and nausea together. I took all 3 of the prescription meds I have for that, ate a handful of crackers, and then propped myself up. I was finally able to go to sleep after a little while listening to music. They basically said to treat this like morning sickness (also all day, like during pregnancy), so frequent small meals etc.
I got the official final report from last week's MRI but I have NO idea what it means, so I have to wait until I see the oncologist on Tuesday to figure out what it actually means.
This week has been frustrating for my crocheting. My first hat was way too small, like baby head small. And when I went to unravel it, it got a knot in it and I had to cut it. Then today I started an open weave sun hat. On the 8th start, I finally got it. I knew it might be a little difficult to do this fine motor stuff I used to, but I wasn't expecting a learning curve like this.
Open house tomorrow for the kids to meet their new teacher. I should be able to make it to the end of it. Charles will take them first, the nanny will meet halfway through (since the teacher should know her too), and then I'll be there at the end. I can't believe they start full time on Monday. That reminds me that we forgot to tear off the "Thursday" chain for their countdown.
Tuesday, August 20, 2013
First day of chemo and radiation combined
Well, yesterday was my first radiation treatment. You can read about it here. Today I found out they are doing 30 treatments instead of 33, so I have 28 left. Last day is scheduled for September 30th. I had discussed 33 treatments with the oncologist to try to spread out the dose and lower the chance of long term side effects according to the Baltimore Hopkins specialist. The local oncologist is out this week, so I talked to another doc in the office. I see my own doctor next week and need to clarify with her why she changed her mind.
I got another info packet on the procedure and side effects of the radiation. It seems I have another 10-14 days left with my hair in tact. I'm already working on one beanie for myself and got a beautiful knit hat from a friend back when this all started. I'm hoping the weather turns cold in September so I don't have to do that "I have cancer" head scarf.
After fighting with the insurance all last week to not only approve the chemo meds but to get them to overnight ship it, I ended up getting it in the mail early enough this morning to start today. I did take the anti-nausea meds too so no nausea so far. As much as I hate the insurance battles, it's so worth it. We're paying 50 cents each for a medication that out-of-pocket costs $309 for one pill. Yup, over 12 grand out-of-pocket for a 42 day treatment (like mine) for people who don't have insurance. This is one big example of the broken healthcare system. I can't imagine how screwed we'd be without good benefits. I have no idea what the radiation treatments cost without insurance.
I've also been battling with my long term disability insurance company. They are trying to say that because I was being treated for migraines before I was effective on the policy (a couple months after I restarted full time) that they don't have to pay the benefit due to some "pre-existing conditions" bullshit. A claims adjuster friend has told me that because the diagnosis wasn't until after the effective date that I should still get benefits. I hope so! Otherwise, we'd have a month lapse in disability payments. However, I do have an amazing employer with even more amazing coworkers who have donated paid time off for me. So if we have to, I'll have them apply a few paid time off hours per week so we'll continue to have some income until I go back full time mid-October.
Insurance. Blessing and a curse at the same time, really.
I got another info packet on the procedure and side effects of the radiation. It seems I have another 10-14 days left with my hair in tact. I'm already working on one beanie for myself and got a beautiful knit hat from a friend back when this all started. I'm hoping the weather turns cold in September so I don't have to do that "I have cancer" head scarf.
After fighting with the insurance all last week to not only approve the chemo meds but to get them to overnight ship it, I ended up getting it in the mail early enough this morning to start today. I did take the anti-nausea meds too so no nausea so far. As much as I hate the insurance battles, it's so worth it. We're paying 50 cents each for a medication that out-of-pocket costs $309 for one pill. Yup, over 12 grand out-of-pocket for a 42 day treatment (like mine) for people who don't have insurance. This is one big example of the broken healthcare system. I can't imagine how screwed we'd be without good benefits. I have no idea what the radiation treatments cost without insurance.
I've also been battling with my long term disability insurance company. They are trying to say that because I was being treated for migraines before I was effective on the policy (a couple months after I restarted full time) that they don't have to pay the benefit due to some "pre-existing conditions" bullshit. A claims adjuster friend has told me that because the diagnosis wasn't until after the effective date that I should still get benefits. I hope so! Otherwise, we'd have a month lapse in disability payments. However, I do have an amazing employer with even more amazing coworkers who have donated paid time off for me. So if we have to, I'll have them apply a few paid time off hours per week so we'll continue to have some income until I go back full time mid-October.
Insurance. Blessing and a curse at the same time, really.
Monday, August 19, 2013
First radiation treatment
Finished the first treatment of radiation therapy. It didn't take long. I got there early and waited a bit until it was my turn. Luckily, I don't have to change into the hospital gown. I got a little shock while waiting when the little old guy before me went into the room with the back of his gown open!
I laid on the table and put my head on the little clear plastic positioner at the left of the picture. They put my specially made mask over my head and clamped it down to the table. I can breathe through it but I can't see. It's so tight that I can't open my eyelids. They did the quick CT scan for positioning, then the actual procedure. It was only a few minutes. I couldn't tell what was actually happening, I could only see when large things blocked the overhead light. Thank goodness for ativan. Otherwise, I probably would have had a panic attack in the machine.
I laid on the table and put my head on the little clear plastic positioner at the left of the picture. They put my specially made mask over my head and clamped it down to the table. I can breathe through it but I can't see. It's so tight that I can't open my eyelids. They did the quick CT scan for positioning, then the actual procedure. It was only a few minutes. I couldn't tell what was actually happening, I could only see when large things blocked the overhead light. Thank goodness for ativan. Otherwise, I probably would have had a panic attack in the machine.
It was over in about 15 minutes start to finish. Repeat 32 more times. The longest part was probably finding a spot in the parking garage and then waiting for my turn.
I'm still struggling with the insurance company about delivering my meds. So I wasn't able to start the chemo today. If it gets delivered tomorrow afternoon, I'll start it Wednesday morning. The chemo oncologist said that is fine, since the chemo is really to help make the cancer cells more sensitive to the radiation, so it's most important at the end for the "harder to treat cells". I do have all the other meds; anti-nausea, antibiotics, pain killers, and anti-anxiety.
Grace and Liam start school a week from today. I'll be walking them over before I go to my appointments. So far, I'm confident I can drive myself. We'll see how it goes as time goes on.
Friday, August 16, 2013
Meds and Party, but not together!
I've been so busy this week between appointments, errands, and phone calls. It feels like a full time job. I seriously have no idea how I got it all done when I was working. And I'm also seriously grateful I still have the ability to drive.
One of my errands was to Home Depot to pick up a lockbox for my medicines. We have our own private bathroom that the kids don't use, but they still have access to it. Right now, the meds are on top of a set of drawers on the side of the sink (the big counter top side). My kids aren't climbers but if they're really motivated, I'm sure they could get up there. The meds all have the childproof tops, but since Grace opened the bottle of vitamins with a "childproof" lid last night. I know that's no longer a safety net. I'm not too worried about the meds I have up there right now as they're all not life threatening unless they take the whole bottle. I'm mostly worried about the chemo pills. Those will come in the individual packs where you peel back the paper and pop the pill from the aluminum. The nurse suggested popping it into a little cup and swallowing it from there because you shouldn't be handling it with bare skin. Remind me why I want to put this in my body again?
G&L turned 5 last week, but their friend party is this Sunday. They're super excited. I'm still trying to get done cakes, snacks/drinks, and favor bags. It's superheroes and princesses, so I got some green and pink rock candy sticks for the favors so they'll have respectively kryptonite and princess wands in little bags. I thought it was creative.
2 more "sleeps" until their party and 3 more until my first radiation treatment. Still doesn't seem real.
One of my errands was to Home Depot to pick up a lockbox for my medicines. We have our own private bathroom that the kids don't use, but they still have access to it. Right now, the meds are on top of a set of drawers on the side of the sink (the big counter top side). My kids aren't climbers but if they're really motivated, I'm sure they could get up there. The meds all have the childproof tops, but since Grace opened the bottle of vitamins with a "childproof" lid last night. I know that's no longer a safety net. I'm not too worried about the meds I have up there right now as they're all not life threatening unless they take the whole bottle. I'm mostly worried about the chemo pills. Those will come in the individual packs where you peel back the paper and pop the pill from the aluminum. The nurse suggested popping it into a little cup and swallowing it from there because you shouldn't be handling it with bare skin. Remind me why I want to put this in my body again?
G&L turned 5 last week, but their friend party is this Sunday. They're super excited. I'm still trying to get done cakes, snacks/drinks, and favor bags. It's superheroes and princesses, so I got some green and pink rock candy sticks for the favors so they'll have respectively kryptonite and princess wands in little bags. I thought it was creative.
2 more "sleeps" until their party and 3 more until my first radiation treatment. Still doesn't seem real.
Wednesday, August 14, 2013
Ramblings
I haven't written in a while because I don't really have that much to say right now. We were at the beach for a week and a half. Those of you with young kids know that "vacation" no longer means "restful" so I'm pretty much just trying to get over the exhaustion from that. It's nice to get a full night sleep in my own bed. I'm also running errands like mad before my daily treatments start next Monday and then school starts for the twins the Monday after.
I went for a 1.5 mile "run" this morning that was more like a walk/jog. It was a similar route to the one I did before the surgery that set off my biggest headache. I need to keep working out. "They" say it will help with the fatigue.
I've had my first follow-up MRI yesterday but won't have the report from that until at least early next week. I went to see the chemo oncologist and had a "chemo ed" appointment today to learn all about that. I have 3 scripts now in hand and waiting for the actual chemo meds in the mail in the next week. One of the scripts is for ativan, which I will probably take Monday morning before my first radiation. I will otherwise most likely have a panic attack in the machine, which sounds unpleasant.
My surgery team at Hopkins followed up with me today. That was really nice. They're on top of it!
I went for a 1.5 mile "run" this morning that was more like a walk/jog. It was a similar route to the one I did before the surgery that set off my biggest headache. I need to keep working out. "They" say it will help with the fatigue.
I've had my first follow-up MRI yesterday but won't have the report from that until at least early next week. I went to see the chemo oncologist and had a "chemo ed" appointment today to learn all about that. I have 3 scripts now in hand and waiting for the actual chemo meds in the mail in the next week. One of the scripts is for ativan, which I will probably take Monday morning before my first radiation. I will otherwise most likely have a panic attack in the machine, which sounds unpleasant.
My surgery team at Hopkins followed up with me today. That was really nice. They're on top of it!
Wednesday, August 7, 2013
The second radiation oncology consult
I wrote about going to this appointment but then I didn't actually write about it. This was the "second opinion" but also the "getting to know the local team" visit. It's technically a part of the Johns Hopkins system; they can pull up my JH records electronically. However, they are also technically run out of Suburban Hospital.
I met with a female oncologist, Dr. H, who had excellent bedside manner and seemed very knowledgeable. All the information was the same as the last radiation consultation, same info on procedure and side effects (long and short). When I asked her point blank, "After seeing my images and reading my reports, is your recommendation to do the treatment?" she said a definitive "yes" and cited the same reasons as the other specialists. They have 1 machine that is 10 years old and another that is new in the last year. The newer one "does a quick CT for positioning" before the actual radiation treatment that only takes about 2-4 minutes. Of course I requested the new one and she said that all brain cancer patients get the new machine since the disease a lot more position sensitive than other parts of the body. Yes, I would think so.
Since that was the afternoon before we were leaving for 1.5 weeks that same evening, she said if we were going to start in August that I needed to do the CT scan immediately for their week long planning/mapping process. They squeezed me in before the tech took down the machine for the night.
I have a new mask. It's a serious Hannibal Lecter type of thing. Imagine a big blue hard plastic horseshoe, big enough that it would go in an arch over your head from the end of your jaw, over and back to the other end of your jaw. Then attach a plastic mesh in the middle of that horseshoe. Have you ever had a plastic cast made? It's like that. They put the plastic in warm water to make it moldable, then he stretched it a little bit before laying it over my head. I am not joking when I say it covers the whole scalp and face, from the crown of the head to under the chin. He formed it over my head and let it cool, tugging on the nose area every once in a while to make sure I had a good pocket to breathe.
It's extremely claustrophobic. He let it harden completely while they did the initial planning CT scan. Did I forget to mention that the blue plastic horseshoe is literally clamped to the table? Then he marked the mask with axis's to make sure it lines up perfectly in the machine every time. This is my new mask that I get to wear for about 20-30 minutes daily for 6 weeks. They put it over my face and clamp it to the table to position me for the radiation therapy treatments. I'm pretty sure I'll be taking a xanax before every appointment!
T minus 12 days to treatment 1.
I met with a female oncologist, Dr. H, who had excellent bedside manner and seemed very knowledgeable. All the information was the same as the last radiation consultation, same info on procedure and side effects (long and short). When I asked her point blank, "After seeing my images and reading my reports, is your recommendation to do the treatment?" she said a definitive "yes" and cited the same reasons as the other specialists. They have 1 machine that is 10 years old and another that is new in the last year. The newer one "does a quick CT for positioning" before the actual radiation treatment that only takes about 2-4 minutes. Of course I requested the new one and she said that all brain cancer patients get the new machine since the disease a lot more position sensitive than other parts of the body. Yes, I would think so.
Since that was the afternoon before we were leaving for 1.5 weeks that same evening, she said if we were going to start in August that I needed to do the CT scan immediately for their week long planning/mapping process. They squeezed me in before the tech took down the machine for the night.
I have a new mask. It's a serious Hannibal Lecter type of thing. Imagine a big blue hard plastic horseshoe, big enough that it would go in an arch over your head from the end of your jaw, over and back to the other end of your jaw. Then attach a plastic mesh in the middle of that horseshoe. Have you ever had a plastic cast made? It's like that. They put the plastic in warm water to make it moldable, then he stretched it a little bit before laying it over my head. I am not joking when I say it covers the whole scalp and face, from the crown of the head to under the chin. He formed it over my head and let it cool, tugging on the nose area every once in a while to make sure I had a good pocket to breathe.
It's extremely claustrophobic. He let it harden completely while they did the initial planning CT scan. Did I forget to mention that the blue plastic horseshoe is literally clamped to the table? Then he marked the mask with axis's to make sure it lines up perfectly in the machine every time. This is my new mask that I get to wear for about 20-30 minutes daily for 6 weeks. They put it over my face and clamp it to the table to position me for the radiation therapy treatments. I'm pretty sure I'll be taking a xanax before every appointment!
T minus 12 days to treatment 1.
Tuesday, August 6, 2013
As time grows near
I shouldn't have done it but I was up really late last night, reading brain cancer blogs. I'll admit, this time I'm more nervous about the upcoming treatment than I was before the surgery, or at least nervous a lot earlier. The treatments aren't for another almost 2 weeks, however, the more I read about them, the worse it seems. Everyone hears about how cancer patients go through hell and I heard about all the side effects from the specialists, but reading first hand experiences really hits it home. It will be a hard 6-8 weeks and then another hard 6 months. I'm doing this to extend the time before regrowth, I want to be around for my family for a long time. I will also admit that it freaked me out when some of the blogs had a final entry from family members that the person had passed away, although encouraged that some of them were after 7-10 years.
We may need to fire up the care calendar again. I may be able to drive myself to my appointments, but I also may not. We're hoping that I remain seizure-free, but the treatment does cause some brain swelling so we really won't know until a few weeks in. It might also exacerbate my headaches so if I'm on pain killers, my reactions might be dulled which means I probably can't drive until it wears off. I could probably wait until after the treatment appointment to take the meds though so really we just need to see how it goes first. It's about 1.5-2 hours round trip 5 days a week. My appointments are only 20 minutes long once I get there and it's about 15-20 minutes each way drive. I already have them scheduled for 10am most of the time and one week of 11am (due to the machine's schedule) starting on August 19th. That gives me time to still walk G&L to school before leaving every morning, which we were trying to work out with my work schedule anyway.
C's 30th birthday is at the end of the month. I feel badly that he'll always remember his 30th birthday as the time his wife started radiation and chemo, but there's really no way around it. I'm just going to try to do something fun so that it doesn't pass by almost unnoticed.
We may need to fire up the care calendar again. I may be able to drive myself to my appointments, but I also may not. We're hoping that I remain seizure-free, but the treatment does cause some brain swelling so we really won't know until a few weeks in. It might also exacerbate my headaches so if I'm on pain killers, my reactions might be dulled which means I probably can't drive until it wears off. I could probably wait until after the treatment appointment to take the meds though so really we just need to see how it goes first. It's about 1.5-2 hours round trip 5 days a week. My appointments are only 20 minutes long once I get there and it's about 15-20 minutes each way drive. I already have them scheduled for 10am most of the time and one week of 11am (due to the machine's schedule) starting on August 19th. That gives me time to still walk G&L to school before leaving every morning, which we were trying to work out with my work schedule anyway.
C's 30th birthday is at the end of the month. I feel badly that he'll always remember his 30th birthday as the time his wife started radiation and chemo, but there's really no way around it. I'm just going to try to do something fun so that it doesn't pass by almost unnoticed.
Thursday, August 1, 2013
A hard decision
For the majority of the last week, I was fairly certain I was going to choose to put off the follow-up treatment as long as possible. As we get more information and talk to all of my physicians again, it's becoming clear that I will need to do the treatment sooner rather than later. "Sooner" meaning pretty much immediately.
The surgeon still says "Personally, if it were me, I would wait until signs of regrowth" because it was a "radical" surgery where most of the tumor was removed. However, he has also talked to all the specialty doctors and "the majority" of them recommend the adjunctive therapy (chemo/radiation). The chemotherapy oncologist is adamant that early treatment will postpone the time before regrowth, saying that it's better to treat it when there are less cells. However there is no definitive data on that theory. Grade 2s don't respond to therapy the way that grade 4s do, but there is little to no research on grade 3s, since they make up very few of the overall number of brain tumor cases. He also says Dr. O is "just" the surgeon and doesn't know everything about the post-surgery treatment. How's that for ego?
So my case was taken to the tumor board on Monday and what the surgeon called "the tumor convention" this week where he consulted with all the specialties. Since it is a grey area of borderline grades 2 and 3, it's considered a unique case. They do know that there are some anaplastic cells that are considered malignant and can grow quickly. The chemotherapy and radiation therapy work well on those fast dividing cells, which are the most aggressive to begin with. The benign cells are less worrisome but they are hoping the treatment will get rid of as much of both types as possible. With the fact that I'm young and fairly healthy to begin with, they expect very little, if any, long term effects from treatment. The worst part will be the immediate effects.
What we've learned about this so far:
The overall group name for this tumor is Glial Tumor because it occurs in the Glial cells of the brain.
Grade 3 is technically called "anaplastic astrocytoma" and considered malignant.
Astrocytomas are the most common central nervous system tumor.
Grade 3 astrocytoma is "rare" compared to other grades/types and only accounts for 2% of all brain tumors.
Positive MGMT methylation indicates how well chemotherapy will work (mine was positive).
My surgery was considered a "gross total resection", the best possible outcome.
I basically am coming to terms with that fact that I have brain cancer. It's scary, but it's also one of those things people just have to deal with. There's no other way but to do what we can and hope for the best. Modern medicine is amazing. My surgery proved that. The treatments are improving every year. People with this disease are living longer. The emotional journey will be hard. It will be difficult to go through these intense therapies without proof that it's working, but we'll make it through.
I'm currently trying to keep my physical health improving. I jogged 2/3rds of a mile outside this week and it wasn't totally awful. It's an improvement, even over the ones where I walk 2 miles per session. The last time I ran, I had a debilitating tumor-induced migraine for over 24 hours so I was nervous this time, but I feel really well. I am still going to keep up with my exercise routine.
On a different but not completely unrelated note, I'm going to start crocheting again. I bought some soft chunky yarn to start with. I remember the beanie hat not being too difficult so I'll start with that, maybe embellish with a little strap over the forehead or a shell pattern rim. I haven't actually started yet because I need to re-familiarize myself with how to do it, more youtube videos and some practice. It will be a good fine motor skill exercise for me.
In the meantime, we're continuing on as normal here at home. As I spend more time studying for my certification test, it's becoming *very* apparent that I haven't taken a formal math class in over 12 years. Oh what's that, past self? You say you don't want to take another calculus course in undergrad because it's too hard? Yeah well, bazinga, present self! I have a feeling I have more schooling and prep courses in my future. I am also thinking this October will not be the test that I take to get my certification. Maybe in April next year, depending on how the six 4 week chemo treatments go.
The kids are still doing well. Our nanny has been an awesome constant source of normalcy for them. They are looking forward to seeing Grandma, Grandpa, Aunt Lauren, and cousins this week. I'm looking forward to some newborn cuddles now that I'm officially allowed to carry his weight around (the little moose!). I'm still planning to walk Grace and Liam to school on their first day the last week of August. I'm excited to give them the bikes and backpacks for their 5th birthday next week.
The surgeon still says "Personally, if it were me, I would wait until signs of regrowth" because it was a "radical" surgery where most of the tumor was removed. However, he has also talked to all the specialty doctors and "the majority" of them recommend the adjunctive therapy (chemo/radiation). The chemotherapy oncologist is adamant that early treatment will postpone the time before regrowth, saying that it's better to treat it when there are less cells. However there is no definitive data on that theory. Grade 2s don't respond to therapy the way that grade 4s do, but there is little to no research on grade 3s, since they make up very few of the overall number of brain tumor cases. He also says Dr. O is "just" the surgeon and doesn't know everything about the post-surgery treatment. How's that for ego?
So my case was taken to the tumor board on Monday and what the surgeon called "the tumor convention" this week where he consulted with all the specialties. Since it is a grey area of borderline grades 2 and 3, it's considered a unique case. They do know that there are some anaplastic cells that are considered malignant and can grow quickly. The chemotherapy and radiation therapy work well on those fast dividing cells, which are the most aggressive to begin with. The benign cells are less worrisome but they are hoping the treatment will get rid of as much of both types as possible. With the fact that I'm young and fairly healthy to begin with, they expect very little, if any, long term effects from treatment. The worst part will be the immediate effects.
What we've learned about this so far:
The overall group name for this tumor is Glial Tumor because it occurs in the Glial cells of the brain.
Grade 3 is technically called "anaplastic astrocytoma" and considered malignant.
Astrocytomas are the most common central nervous system tumor.
Grade 3 astrocytoma is "rare" compared to other grades/types and only accounts for 2% of all brain tumors.
Positive MGMT methylation indicates how well chemotherapy will work (mine was positive).
My surgery was considered a "gross total resection", the best possible outcome.
I basically am coming to terms with that fact that I have brain cancer. It's scary, but it's also one of those things people just have to deal with. There's no other way but to do what we can and hope for the best. Modern medicine is amazing. My surgery proved that. The treatments are improving every year. People with this disease are living longer. The emotional journey will be hard. It will be difficult to go through these intense therapies without proof that it's working, but we'll make it through.
I'm currently trying to keep my physical health improving. I jogged 2/3rds of a mile outside this week and it wasn't totally awful. It's an improvement, even over the ones where I walk 2 miles per session. The last time I ran, I had a debilitating tumor-induced migraine for over 24 hours so I was nervous this time, but I feel really well. I am still going to keep up with my exercise routine.
On a different but not completely unrelated note, I'm going to start crocheting again. I bought some soft chunky yarn to start with. I remember the beanie hat not being too difficult so I'll start with that, maybe embellish with a little strap over the forehead or a shell pattern rim. I haven't actually started yet because I need to re-familiarize myself with how to do it, more youtube videos and some practice. It will be a good fine motor skill exercise for me.
In the meantime, we're continuing on as normal here at home. As I spend more time studying for my certification test, it's becoming *very* apparent that I haven't taken a formal math class in over 12 years. Oh what's that, past self? You say you don't want to take another calculus course in undergrad because it's too hard? Yeah well, bazinga, present self! I have a feeling I have more schooling and prep courses in my future. I am also thinking this October will not be the test that I take to get my certification. Maybe in April next year, depending on how the six 4 week chemo treatments go.
The kids are still doing well. Our nanny has been an awesome constant source of normalcy for them. They are looking forward to seeing Grandma, Grandpa, Aunt Lauren, and cousins this week. I'm looking forward to some newborn cuddles now that I'm officially allowed to carry his weight around (the little moose!). I'm still planning to walk Grace and Liam to school on their first day the last week of August. I'm excited to give them the bikes and backpacks for their 5th birthday next week.
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