Exactly a week from today, I will be finished with the radiation and 42 day chemo treatments!! I'm so excited. I'm also a little nervous. The doctor said I could have a honeymoon of feeling better and then a crash. Total "recovery" from treatment (WHY?!) could be 4-6 weeks. And then on top of that, I only have 4 weeks break anyway before starting the next round of oral chemo, which I don't know how I'll react to either. I think with my age and good health before all this, I may be able to recover pretty quickly though. It will help if I can get off the steroid all together so I can sleep.
I take the last chemo pill and have the last radiation treatment on Monday the 30th. Then I have about a month off. We'll decide at my appointment on the 3rd what day to actually start and when to schedule my "new baseline" MRI. The next phase is 5 days of high dose oral chemo and 23 days off of it. This repeats 6 times. I should be starting the first round probably the week of my birthday and Halloween. I may try to fudge it either direction depending on how it will line up with holidays. I don't know what my physical reactions to the higher dose will be or when they'll happen (during those 5 days or after?) and I don't want to be at my low point in the cycle during Thanksgiving and Christmas.
I'm counting my blessings though all this shit though. I have an amazing job to return to. While we do have high medical bills, we are able to space out the payments to make it more manageable and our portion is literally hundreds of thousands of dollars less than if we were without medical insurance (so far racked up $140k in costs). While I'm unsure of the long term disability insurance being approved for the next few weeks and covering the other hours of the weeks that I might not be able to do full time, we've had good short term payments for the last 12 weeks and were able to retain our fabulous nanny. I haven't had any seizures so I still have my independence with driving and especially going to/from work. Friends, family, and coworkers (and in some case, strangers) have been so generous to us that we're covered for food for our family through October still! And the biggest benefit of my C card so far has been using it to negotiate a lower rent increase for our 16 months renewal.
The kids are all doing well. Charles and I both have a shorter fuse than normal (worse on less sleep) but we're both consciously making an effort to try to reign it in. We have 5 year olds who are testing every boundary, and a 2 year old that is determined (her biggest personality trait!) and she's.... well.... two. Grace wants to know that we mean what we say so when we threaten something, we HAVE to follow through. They're inquisitive, which is great, but takes more patience on our part to appropriately explain why we're asking them to do or not do something so they know there's an actual reason and we're not being bossy. Then we wait. and wait. and wait. for her to take her dear sweet time doing anything and EVERYTHING. It can be SO frustrating sometimes.
We are holding off on potty training Ellie since she refuses to even try when we ask even when she's got a dry diaper. We're also holding off on turning her crib into a toddler bed. The mattress is on the floor inside the crib (crib bottom is low to the ground) so she isn't climbing out yet. But she also gets up at 5:30 some days. We're not in a rush to allow her freedom that early in the morning or the option to skip nap more easily than she already does. We got her a "night owl" that turns green at 7am to let her know it's okay to sing and wake up the whole house, but it glows pink all night and instead of having a "green means go" attitude to the green light change, she just gets pissed that it isn't pink anymore! She's such a pip.
As far as how they're relating to my disease, they seem to be doing fine with it. They will ask questions occasionally or we'll tell them they can ask us anything about it. They still understand there was a "boo boo" in my head that the doctor took out. I go to the doctor every day to make sure it stays away. I take medicine that makes my hair fall out and makes me tired sometimes. Most people we know already know that I'm sick so we don't have to tell them and they won't make fun of me for not having hair. Liam is very worried about "people will laugh at you" if I go outside without my head covered. That's all they need to know and it's enough for them. I think we'll wait until they're old enough to understand, without fear, what the medical terms mean. I don't know when that will be, but definitely not for another couple years.
We still try not to talk about it in front of them, but then there's people like the woman in the waiting room at their well visit pediatrician appointment this afternoon, who took it on herself to ask if I was going through cancer treatments while Grace was standing right there and say her mom is going through breast cancer treatments. Really? I mean it's obvious since I'm wearing a new "I have cancer" head covering, but is there no privacy to strangers? How do I respond to that? I'm not going to give my life story to a stranger in front of my kids or even by email, or in the mood to accept unsolicited advice. I need some zingers to put people off. I'm not usually someone to purposely make someone have a WTF reaction, but I do really need something to make people back the F up. It's like when stranger touch a baby or a pregnant woman's stomach unsolicited. What about cancer makes people think they can pry into a stranger's life?
Anyway, done with that rant... for now. Charles and I had a lovely day today. He decided to take the whole day off, which was really really nice. Despite having a medium-low night sleep (for both of us, even in different rooms), we were able to go get a starbucks coffee, go to the appointment together, have a nice lunch out, and then a half hour walk in the lovely weather before the nanny had to leave. Then we hung out alone together while Ellie napped before we took the kids to their well visit in the afternoon. Cousin Luke came to play with Ellie which was great too cause then we didn't have to take her with us to the appointment. Man, the one on one parenting of that appointment brought it into clear focus just how much easier it is with 2 kids!! Not that I don't enjoy having 3, just an observation!
Long update. Thanks for hanging in there with me.
Monday, September 23, 2013
Sunday, September 22, 2013
Getting through it
Single digit days left!! Last radiation treatment AND last chemo pill is the 30th.
It's been a rougher couple weeks than the first two. I've written about the other side effects I've had so far: the headache/vomiting episode, heartburn, fatigue, heart palpitations, etc. The most recent is this chest stuff. I am having chest pain from anxiety, get tired out even going up the stairs, heart palpitations sometimes every few minutes. The anxiety from the symptoms makes them worse too so it's a bad cycle. Luckily, the medications seems to be helping, except the steroid, which makes some things much worse while helping others. I am stepping down the steroid now, thank goodness, but my headache came back this weekend so I'm concerned I'll have to stay on the lowest dose longer term possibly through all of October. At least I'm sleeping better overnight now that the dose is lowered.
The doctor talked to me Friday about the "recovery" from the treatment. It seems weird to say it that way, but it does take time for the side effects of treatment to dissipate. The main symptom is the brain swelling, which is why I am thinking I'll have to be on the steroid for the recovery period. She said there will probably be a honeymoon period, not sure how long, where I'll feel better. Then there will be a crash of energy and total recovery could be 4-6 weeks.
I am planning to go back to work the Monday exactly a week after the end of treatment. I am hoping to get at least one good week of work in before the tiredness sets in and I have to cut back some hours. I also start the 5/23 schedule of higher dose chemo at the end of October (I think I'll be on it for my actual birthday and Halloween) and not sure how I'll react that week or the following week. This is the time when I do 6 rounds of the chemo, 5 days taking the pills and 23 days to recover. The first "follow-up" MRI, baseline, will be end of October too.
At the end of the second week of work, which will be about 2.5 to 3 weeks after treatment, Charles and I have a trip into DC scheduled. His wonderful parents got us a hotel room for 2 nights and are watching all the kids so we can have a weekend to ourselves to be tourists. It's a combination celebration for Charles' 30th birthday, my upcoming birthday (not 30!), our 7th wedding anniversary, and end of treatment. We have lived metro accessible to DC for 12 years and only get in to do the touristy stuff about once a year, around Cherry Blossom time when/where he proposed to me in 2005. This will be a great trip for us and I hope my fatigue doesn't dampen it too much. We're considering renting a wheelchair if I need it.
Tonight, I have a social mixer in DC for a "Young Adults with Cancer" support group. It's for people in their 20's, 30's, and 40's. This will be the first event that I attend with them. I'm not sure what to expect really but it'll be nice to meet people in person who are going through or have been through what I am. I'm naturally and introvert so events like this tend to tire me out.
It's been a rougher couple weeks than the first two. I've written about the other side effects I've had so far: the headache/vomiting episode, heartburn, fatigue, heart palpitations, etc. The most recent is this chest stuff. I am having chest pain from anxiety, get tired out even going up the stairs, heart palpitations sometimes every few minutes. The anxiety from the symptoms makes them worse too so it's a bad cycle. Luckily, the medications seems to be helping, except the steroid, which makes some things much worse while helping others. I am stepping down the steroid now, thank goodness, but my headache came back this weekend so I'm concerned I'll have to stay on the lowest dose longer term possibly through all of October. At least I'm sleeping better overnight now that the dose is lowered.
The doctor talked to me Friday about the "recovery" from the treatment. It seems weird to say it that way, but it does take time for the side effects of treatment to dissipate. The main symptom is the brain swelling, which is why I am thinking I'll have to be on the steroid for the recovery period. She said there will probably be a honeymoon period, not sure how long, where I'll feel better. Then there will be a crash of energy and total recovery could be 4-6 weeks.
I am planning to go back to work the Monday exactly a week after the end of treatment. I am hoping to get at least one good week of work in before the tiredness sets in and I have to cut back some hours. I also start the 5/23 schedule of higher dose chemo at the end of October (I think I'll be on it for my actual birthday and Halloween) and not sure how I'll react that week or the following week. This is the time when I do 6 rounds of the chemo, 5 days taking the pills and 23 days to recover. The first "follow-up" MRI, baseline, will be end of October too.
At the end of the second week of work, which will be about 2.5 to 3 weeks after treatment, Charles and I have a trip into DC scheduled. His wonderful parents got us a hotel room for 2 nights and are watching all the kids so we can have a weekend to ourselves to be tourists. It's a combination celebration for Charles' 30th birthday, my upcoming birthday (not 30!), our 7th wedding anniversary, and end of treatment. We have lived metro accessible to DC for 12 years and only get in to do the touristy stuff about once a year, around Cherry Blossom time when/where he proposed to me in 2005. This will be a great trip for us and I hope my fatigue doesn't dampen it too much. We're considering renting a wheelchair if I need it.
Tonight, I have a social mixer in DC for a "Young Adults with Cancer" support group. It's for people in their 20's, 30's, and 40's. This will be the first event that I attend with them. I'm not sure what to expect really but it'll be nice to meet people in person who are going through or have been through what I am. I'm naturally and introvert so events like this tend to tire me out.
Thursday, September 19, 2013
I'm radioactive!
Friday update: No blood clot in lungs, no brain bleed. I can start to taper off the steroid!! Hooray! Best news all week. Off to my treat retail therapy!
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Then the other oncologist wanted a detailed MRI to make sure my severe symptoms from two weeks ago weren't due to a brain bleed. Took a week for authorization for that so it wasn't until this afternoon. More contrast for that one. So in addition to my normal daily radiation treatment, I have 2 types of contrast dyes in my system! Yummy! Do I look bright green yet? Hulk smash?
Anyway, no blood clot, at least not one that they would have sent me to a hospital for. They kept me a few minutes after yesterday just in case there was an emergency situation on the scan, but I don't have the official "all clear" yet. They don't give any indication at all today about the brain bleed possibility, so I do have to wait until the office gets the results this afternoon or tomorrow (not banking on today). I'm not expecting anything too bad since I'm feeling not too terrible right now. I'm tired and my heart beats out of my chest often, but I'd be far worse off if I had bleeding in my brain or a blood clot in my lungs.
I learned a new term this week: No Evidence of Disease, or NED. I like it because it seems so neutral and scientific. Remission makes it seem like a break before another storm. There is no "cure" so that's not a word we can use. "Cancer free" has the C word in it, so that feels aggressive to use. NED just seems matter of factual; we can't tell there's anything in there so for now, we'll see there's no evidence of the disease. Boom. Done. Then we just hope and pray for no new evidence of the disease FOREVER!! So yes, NED is my goal. I'm pretty sure that'll be how it is anyway since immediately following the surgery, they couldn't see any remaining cells on the scans.
Sleep still sucks. Well it doesn't if you can actually get some, it sucks when you can't. Last night was another night of 2 hours of sleep for me. I really want to get the clean MRI report so I can step off this devil medicine!
Tuesday, September 17, 2013
Problem solving!
Necessity is the mother of invention right? Remember that (trivial) complaint about my ear hurting when I lay on my side? I made this soft, little ear wrap to deal with it. And it actually worked! The fat part rests behind my ear like a hearing aid. I need to make a second so I don't have to switch it when I turn over. I'm probably a little over proud of myself for this, haha. I just thought it was neat that I was able to craft my way out of an issue instead of throwing medicine at it.Monday, September 16, 2013
Rough evening
I understand on days like today, more than any other time, how important sleep really is. Last night was one of those nights I was awake for several hours in the middle of the night. I didn't do too badly for most of the day. Still very thankful for my support army that is giving me rides to my appointments and sometimes on errands too. Starting late afternoon, I was getting heart palpitations. After a great playdate, I went upstairs to rest then came down for dinner. Now I'm back to resting again. Whenever I get out of bed, even to go to the bathroom, I get palpitations and feel "funny" so I think I'll take a rest in bed and go to sleep early night.
We tweak my meds for one thing and then another happens. Seems like things are going well when something else pops up. Hopefully a good night sleep will set things right.
We tweak my meds for one thing and then another happens. Seems like things are going well when something else pops up. Hopefully a good night sleep will set things right.
New hair... again
So the treat for the end of treatment week 4 was a new hair do! It's considered a "cranial prothesis" so it was actually covered under insurance. My mom covered the extras (wig stand, caps, shampoo, etc). We had a fun time trying them on and deciding on the right one. The one I ended up with looks very similar to how I had it cut before the surgery but with more color variation. So going to church, I was less conscious about how I looked. And Charles, with his mohawk, seemed more self conscious as a result. I got compliments on my new hair do (not in front of Grace, so she couldn't blurt out that it was a wig).
I wore it Friday to pick up the bigs from school. Grace said very loudly several times, "I LIKE YOUR WIG, MOMMY!!" Haha. No subtlety there. I was flattered and embarrassed at the same time. So now we refer to it as "my new hair" so that the word "wig" will come up less in public or to complete strangers. Ellie likes it more than when I'm without it, but I do need a break from having it covered since I have some irritation and losing some of the mohawk still.
Liam had a hard time with the change. I think he was just getting used to the baldness with blue mohawk so the "regrowth" of hair was a little unsettling for him. I've been alternating between the new hair, hats, wraps, etc, and just being without anything at home so it's changing several times a day even. He said to me over the weekend "Why does it always go long, short, long, short, long, short?" Poor kiddo. We explain that the medicine I take makes my hair fall out so sometimes I'll have the new hair and sometimes I won't.
I'm debating about using the actual medical terms for my illness with them. Right now, we call it a "boo boo in my head that they took out, and now I go to the doctor every day to make sure it stays away." I'm wondering if the words cancer or tumor would be too much for them. With how Grace is so vocal about my "WIG", I'm not sure I want her going around saying things like "My mommy has cancer!! And it makes her hair fall out so she has a WIG!" These 5 year olds!!
I have a weird complaint about sleeping and no hair. I've always had long hair or at least a little behind my ears. Now that there's nothing there, when I sleep on my side, it pushes my ear back against my head and makes them hurt when I wake up. I know men and boys with buzzed hair or bald head deal with this all the time, it's just a nuisance I'm not used to. I'm planning to crochet a little headband to tuck behind my ears at night for padding. Solve any problem with crafting!
Tuesday, September 10, 2013
Ugh, this is hard
I am talking to my physician again today. This dang headache still won't go away. I hope there's another way to deal with it than more steroids. Even the current dose is keeping me up at night. Last night, I took every pill in my arsenal and still took until 4am to fall asleep. Then the youngest was up just after 6am. The insomnia is unbearable. It makes me very spacey during the day. Not to mention the wicked heartburn from the steroids too. Ugh!
At least my nausea and vomiting is under control. I take an unbelievable amount of medication in one day. I haven't even counted how many. I'm starting to feel like I have my own pharmacy at home, under literal lock and key safe.
I miss working. I am starting to gain more muscle memory for my crochet so I'm hopeful it will be a quick turn around time for my drafting skills. I miss the new stuff I was starting to learn too like checking shop drawings and new functions in Revit. I'm hopeful I can get back to the office at least 30 hours a week pretty quickly after the treatment is over. It will probably depend on my brain's reaction to the full course of treatment. These steroids make me pretty miserable most of the time.
I have noticed some concentration issues that I may have to make some accommodations for. I used to be able to multi-task a lot better. I could read a kid's book, that we've read 100 times, and be able to think about other things while I was reading. Now, I really have to concentrate on every sentence or I get mixed up quickly. So I can't let my mind wander. It makes me wonder if I'll have to stop with my work "entertainment" like music and even comedy podcasts. Not that it would be a terrible thing, I would just miss it. Music might be okay, but having people talking in podcasts would probably be too much.
And I am still constantly amazed at our wonderful support system. I reached out for rides for the rest of the month and the schedule has filled up so quickly. I love seeing the friends and family who come to help out or just hang out. I still get support cards, which are really nice. I have some very thoughtful and generous friends, too!
At least my nausea and vomiting is under control. I take an unbelievable amount of medication in one day. I haven't even counted how many. I'm starting to feel like I have my own pharmacy at home, under literal lock and key safe.
I miss working. I am starting to gain more muscle memory for my crochet so I'm hopeful it will be a quick turn around time for my drafting skills. I miss the new stuff I was starting to learn too like checking shop drawings and new functions in Revit. I'm hopeful I can get back to the office at least 30 hours a week pretty quickly after the treatment is over. It will probably depend on my brain's reaction to the full course of treatment. These steroids make me pretty miserable most of the time.
I have noticed some concentration issues that I may have to make some accommodations for. I used to be able to multi-task a lot better. I could read a kid's book, that we've read 100 times, and be able to think about other things while I was reading. Now, I really have to concentrate on every sentence or I get mixed up quickly. So I can't let my mind wander. It makes me wonder if I'll have to stop with my work "entertainment" like music and even comedy podcasts. Not that it would be a terrible thing, I would just miss it. Music might be okay, but having people talking in podcasts would probably be too much.
And I am still constantly amazed at our wonderful support system. I reached out for rides for the rest of the month and the schedule has filled up so quickly. I love seeing the friends and family who come to help out or just hang out. I still get support cards, which are really nice. I have some very thoughtful and generous friends, too!
Saturday, September 7, 2013
A new new do
So over the last few days, I've lost about 1/3rd of my hair. It was very very noticeable. Over the course of this whole disease, I've only cried a handful of times; when I first found out, a few times during post-surgical pain, this week when I couldn't eat or drink for 24 hours, and then yesterday when I actually started to feel sorry for myself.So I decided to let myself feel bad, for like 15 minutes, and then do something about it. I went shopping and got a hat and scarf from Old Navy (thanks to my sister for a gift card). I cut up a couple t-shirts to make into head wrappings (go youtube!) and then decided to go drastic with my hair.
I had two very large gaps on either side of my head. I'm reluctantly going to post the before picture just to illustrate the severity of the loss. I decided to go "punk" for now as a big F U to brain cancer. I shaved the majority of my head and left a strip down the top for a mohawk. Then I did what I've always wanted to do, but was either too afraid to or was trying to stay professional; dyed it blue! So here's the pictures of before and after. Charles is amazing cause he did all this with me to show support!Having my head covered makes the skin sensitive so I wanted it to change it to something that might be a shock for the kids, but at least not ever changing so I could let it air out a bit. "Stable"-ish, I guess. They were already used to the shorter hair. We had prepped them a lot about it and I had it short for a long time. This time was harder on them. We were all wearing bandanas and hats earlier today as a "bandana family" in solidarity.
I let them see my head after shave, before dye. Ellie wouldn't come near me (like when I got it chopped the first time). Liam kept asking for me to put the bandana back on. Grace likes it and is upset I won't do the same to her hair. Although they all do want the blue, which they can't have, cause apparently it'll stain stuff even after it's set.
I just wanted to write this post so that people who see me in the near future aren't taken by surprise. I'll be wearing head coverings in public most likely, but some of you will see me at home.
I also want to keep this blog as honest and forthcoming as possible so that when people like me go searching the internet for blogs about what's happening to them, they'll know they're not alone. And they'll know what one of their peers did about it.
Thursday, September 5, 2013
This is not for the faint of heart
Yesterday was a rough day for me. I wasn't able to hold down anything to eat or drink all day. Thank goodness for good people that drove me to my appointments because I wouldn't have been able to take myself. I took my puke bucket to the radiation appointment and talked to the doctor after (that doesn't happen every time). She said my sudden onset of new headache, that wouldn't respond to my pain meds, and severe nausea could be due to brain swelling from the treatment, so I'm now on low dose steroids for a few days until the symptoms disappear. If they come back after I've weaned off, I may have to be on them longer term.
By the time I went to my appointment at 2:30pm, I was in really bad shape. I had kept down the steroid, a few sips of gatorade, and 3 bites of mashed potatoes so far all day. It took 3 needle sticks to get their blood work (my normally small veins were even smaller). The P.A. took one look at me and said we should do an IV with anti-nausea meds and a full bag of saline fluids. We worked out a new system for my daily nausea meds too, so I have new prescriptions. They had a hard time starting the IV too, so all in all, I had my arms poked 5 times yesterday and I'm feeling it today. I was resting in their chemo chairs for about 2.5 hours surrounded by people getting iv meds much stronger than mine (iv chemo). By the end of the first hour, I was able to suck on hard candy. By the end of the 2nd, I could eat a bag of rice crackers I had brought with me in my purse. I think I should keep my crochet bag with me, in case I need to do that again. That would be a great time to pass the time, other than playing on my phone and wondering when it would run out of battery.
When I got home, thanks to a ride from a wonderfully kind person, I wolfed down a full container of Simply mashed potatoes and half a jar of gravy (kept it all down btw). Charles and the kids had gone to get my prescriptions, so I had a few minutes to myself. Once they got home, it was obvious "the baby" hadn't slept that afternoon. She went straight up to bed and I read to Grace and Liam for a few books. Then it was my turn to go to bed. I was knocked out by 7pm and slept until 6am! I know every night won't be like that, but I'm so glad I was feeling better enough to get some good rest. For the 2 nights before that, I was up late trying not to, or actually throwing up.
This morning, my hair is starting to fall out. It's not in clumps like people imagine, at least it isn't yet anyway. I would compare it more to losing hair after pregnancy. You know when you're pregnant, your head grows hair thick and crazy fast, and holds onto every strand. Then when you have the baby, it's like "Oh, you were actually supposed to loose a little of it as we went along like you usually do, so here's those 9 months of hair you weren't supposed to hold onto." Charles reminded me this morning that it will probably be the opposite of that. I'll loose it all at once and then it will take 9 months to thicken up again. He's probably right.
Anyway, there's my update for week 3. Not a great one. When they said this isn't for wussies, they meant it. Luckily, we have rides lined up for almost all of my appointments from here on out, so I don't have to worry about if I have a bad night sleep (other than just the general worry of being tired) and Charles has said he'll be "on call" for the morning if I can't get out of bed to get the kids ready for school. I have more anti-nausea meds on hand, even some I can take without actually swallowing the pill. Hopefully, I won't be adding "sunburned" scalp to this list of symptoms! But I will deal with it if/when I do.
Continued prayers and kind thoughts are nice. I got a couple nice cards in the mail a few days ago which lifted my spirits. If anyone is around to play with the kids on Monday afternoons from 3-5pm, or any afternoon from 4pm-5ish, that would get great help for us. Charles has been getting in to work late from staying in later in the morning so he could use the extra hour in the afternoon to stay late. Some afternoons are just rough for me to have all the energy around and then cook dinner. On Mondays, it is the nanny's half day, so I take Ellie from her nap and walk to get the twins from school. So if people are around in the late afternoon that want to come play, that'd be awesome. Or if you want to drop off a meal any day, we'd really appreciate it (still garlic free, as a reminder). Thank you to everyone who has helped so far and are continuing to help now. It means a lot.
By the time I went to my appointment at 2:30pm, I was in really bad shape. I had kept down the steroid, a few sips of gatorade, and 3 bites of mashed potatoes so far all day. It took 3 needle sticks to get their blood work (my normally small veins were even smaller). The P.A. took one look at me and said we should do an IV with anti-nausea meds and a full bag of saline fluids. We worked out a new system for my daily nausea meds too, so I have new prescriptions. They had a hard time starting the IV too, so all in all, I had my arms poked 5 times yesterday and I'm feeling it today. I was resting in their chemo chairs for about 2.5 hours surrounded by people getting iv meds much stronger than mine (iv chemo). By the end of the first hour, I was able to suck on hard candy. By the end of the 2nd, I could eat a bag of rice crackers I had brought with me in my purse. I think I should keep my crochet bag with me, in case I need to do that again. That would be a great time to pass the time, other than playing on my phone and wondering when it would run out of battery.
When I got home, thanks to a ride from a wonderfully kind person, I wolfed down a full container of Simply mashed potatoes and half a jar of gravy (kept it all down btw). Charles and the kids had gone to get my prescriptions, so I had a few minutes to myself. Once they got home, it was obvious "the baby" hadn't slept that afternoon. She went straight up to bed and I read to Grace and Liam for a few books. Then it was my turn to go to bed. I was knocked out by 7pm and slept until 6am! I know every night won't be like that, but I'm so glad I was feeling better enough to get some good rest. For the 2 nights before that, I was up late trying not to, or actually throwing up.
This morning, my hair is starting to fall out. It's not in clumps like people imagine, at least it isn't yet anyway. I would compare it more to losing hair after pregnancy. You know when you're pregnant, your head grows hair thick and crazy fast, and holds onto every strand. Then when you have the baby, it's like "Oh, you were actually supposed to loose a little of it as we went along like you usually do, so here's those 9 months of hair you weren't supposed to hold onto." Charles reminded me this morning that it will probably be the opposite of that. I'll loose it all at once and then it will take 9 months to thicken up again. He's probably right.
Anyway, there's my update for week 3. Not a great one. When they said this isn't for wussies, they meant it. Luckily, we have rides lined up for almost all of my appointments from here on out, so I don't have to worry about if I have a bad night sleep (other than just the general worry of being tired) and Charles has said he'll be "on call" for the morning if I can't get out of bed to get the kids ready for school. I have more anti-nausea meds on hand, even some I can take without actually swallowing the pill. Hopefully, I won't be adding "sunburned" scalp to this list of symptoms! But I will deal with it if/when I do.
Continued prayers and kind thoughts are nice. I got a couple nice cards in the mail a few days ago which lifted my spirits. If anyone is around to play with the kids on Monday afternoons from 3-5pm, or any afternoon from 4pm-5ish, that would get great help for us. Charles has been getting in to work late from staying in later in the morning so he could use the extra hour in the afternoon to stay late. Some afternoons are just rough for me to have all the energy around and then cook dinner. On Mondays, it is the nanny's half day, so I take Ellie from her nap and walk to get the twins from school. So if people are around in the late afternoon that want to come play, that'd be awesome. Or if you want to drop off a meal any day, we'd really appreciate it (still garlic free, as a reminder). Thank you to everyone who has helped so far and are continuing to help now. It means a lot.
Monday, September 2, 2013
Asking for more help
Hi friends and family,
I'm starting to feel fatigue now from the treatment. I nap at least once a day. Earlier this week, I was awake for 5 hours in the middle of the night. Obviously, it made me nervous to drive, being so tired. So I'm now asking for some help with driving me to appointments. They don't take all that long round trip since the office is in Bethesda and the appointment is only about 20 minutes. If anyone is around to give me a ride, it would be much appreciated.
Also, our nanny only works half a day on Mondays, but Charles needs to work all afternoon from home after taking me to the appointment in the morning. If anyone is around Monday afternoons starting at 3 for a couple hours, we'd love the company and playing with the kids so I can start dinner. So I put a few "childcare" needs on the calendar.
I took our street address off the calendar because of the public nature of all this blog. If you sign up for something and don't know how to get to our house, you can email Charles (coordinator on the calendar) or me for our address and a map of where to park. Or if we're running down to the wire, you can call me to meet you out at the parking lot.
Thanks in advance!!
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I'm starting to feel fatigue now from the treatment. I nap at least once a day. Earlier this week, I was awake for 5 hours in the middle of the night. Obviously, it made me nervous to drive, being so tired. So I'm now asking for some help with driving me to appointments. They don't take all that long round trip since the office is in Bethesda and the appointment is only about 20 minutes. If anyone is around to give me a ride, it would be much appreciated.
Also, our nanny only works half a day on Mondays, but Charles needs to work all afternoon from home after taking me to the appointment in the morning. If anyone is around Monday afternoons starting at 3 for a couple hours, we'd love the company and playing with the kids so I can start dinner. So I put a few "childcare" needs on the calendar.
I took our street address off the calendar because of the public nature of all this blog. If you sign up for something and don't know how to get to our house, you can email Charles (coordinator on the calendar) or me for our address and a map of where to park. Or if we're running down to the wire, you can call me to meet you out at the parking lot.
Thanks in advance!!
HELPER LOGON
==============================
The HELPER logon is used by family and friends
that would like to sign-up to help a loved one.
To access Katie Bevington's personal CareCalendar site,
visit http://www.carecalendar.
the following information in the appropriate spaces:
CALENDAR ID : 151231
SECURITY CODE : 7678
Wednesday, August 28, 2013
Feeling some fatigue now
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.
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.
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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