Old, but I’m not that old. Young, but I’m not that bold.

Today is my birthday. I turn 31. I have to say, the past year has been the hardest of my life so it can only go up from here, right? Selling our house and moving, starting to work again, tumor and cancer diagnosis followed by treatments, and our bigs starting full day public school. I have half a year of this maintenance chemo treatment and the goal for the year is NED (no evidence of disease). It sounds morbid to think this way, but I’m wondering if every birthday, start of the new calendar year, and summer “cancerversary” will briefly make me think “How many more years do I have left?” This one already has. Maybe everyone thinks this way on their birthday as they get older and hit the age milestones, maybe they don’t. Of course, it leads to all the other “what if’s” like seeing the kids having boy/girlfriends, graduate from high school and college, getting married, and having kids of their own.

I’m still sleeping very poorly. I’m up every couple hours all night and lately been in the habit of being awake from 4-5am. It’s so frustrating. I’m trying all sorts of things to see if it helps. So far, I’m blaming the steroid. Directly following my surgery, I was on so much of it that I couldn’t sleep more than a few hours a day when they told me I’d be sleeping more than half the day. I stepped down by 1/3^rd this week, but it will still be over a month to get completely off without having the relapse of symptoms or withdrawal effects. So far, I haven’t had the withdrawal headache from this step down that I did when I last tried to wean off. After being on some dose of this for the majority of 4 months, it’s getting really old.

During the month that I was off (between surgery and radiation), I was actually able to work out and get some of my physical stamina back. I had started walking and jogging again. Now, I’m just too tired and don’t want to take away my physical energy needed to do the other stuff required of me. Once I start sleeping better, my plan is to restart the 5k running program. There’s a 5k charity run that benefits the National Brain Tumor Association in early May that I would like to do. I think that’s an attainable goal, even with my last chemo round being scheduled for that last week of March and my other major goal of the year being to pass the engineering certification exam in April.

So today, I stopped for Starbucks on my way to work. I was tired from my bad night sleep so I left work early to take a bath and a nap.  The family had pizza and cake at home. My parents sent presents for me to open, which was awesome. After homework, peeling oranges for kid school Halloween party tomorrow, and putting them to bed, C and I watched a movie. And lots of birthday wishes. It was a nice day.

Chemo schedule and weaning the steroid

I had an appointment with the oncologist today. It was a decent one, I guess. We decided on starting the 6 rounds of chemo (5 days of oral temodar with 23 day break) on Wednesday Nov 6th. Usually they do Mon-Friday but I wanted to start Weds because then the last two days would be on the weekend instead of work days.

I'm going to try weaning off the steroid again. We have a better, more gradual plan this time. Today is exactly 4 weeks after the last radiation treatment. Doctor said it could be 4-6 weeks for any possible swelling to go down, so by the time I'm off the steroid, we should be clear of that. I'm SO looking forward to sleeping more and eating less once I'm off this!!

I've updated the care calendar with a few needs during my chemo weeks for November and December, like a couple meals and some childcare for down time for Charles.Here's the login info. If you need our numbers or address, you can email Charles through the calendar. If you can help, that'd be great.

Carecalendar.org
Calendar number: 151231
Security code: 7678

Readjusting normal

The "new normal" finally caught up to me in the last few days. I think I jumped back into "mom machine" mode too early, taking on too many responsibilities and putting the family/house first. I needed the reminder that I'm still recovering and need to take care of myself too.

Work is definitely not the issue. I try to do 6 hours days, but I've allowed myself to knock out early by an hour or two if I need it. I'm still staying long enough to get the work done. Luckily, I haven't been overbooked on what's expected of me so it makes it easier to lend myself some slack with my hours. And now that long term disability has been approved (have I mentioned that here yet??), I will still get paid a percentage of the lost hours, which makes it even easier for me to justify the shorter schedule.

The issues are the before/after work routines and the fact that I can't sleep. I think the steroid is to blame here so I'm going to work out a weaning plan with the doctor at Monday's appointment.

I still am not sleeping through night, some nights even as bad as waking every hour. Sometimes that's my own fault with getting up to go to the bathroom, or my ear hurting (Seriously? That's still a problem??), or just plain waking for no reason. Sometimes it's Charles' fault for snoring, making funny breathing noises, or being restless (none of which he can control, obviously). Sometimes it's the kids, waking early or throwing up in the middle of the night. We've had a kid throw up in the night at least once per night for 4 of the last 12 nights, it's ridiculous.

Then there's the normal mom responsibilities and what's required of me due to schedules. I jumped back into those too quickly and finally allowed myself last night to realize I just can't do that much yet, but I also feel guilty having Charles do most of it. We are working together on trimming down our processes to make less work for ourselves. We already had the routine of doing laundry only on the weekends (except for pukey stuff). I've asked him to help more with dishes (or allow us to use more paper products, which is hard to propose to an environmentalist), pack lunches the night before, help make pre-made meals on the weekend to heat up during the week, etc. Hopefully we'll be able to come up with a new weekly routine that helps me recover while not over-taxing him either.

If anyone reading this wants to drop off a garlic and tree-nut free meal, we'd LOVE one any day :) (I think I also forgot to mention we took Grace to the allergist cause she had a reaction to a tree nut in a granola bar. She's fine with peanuts, but we're not sure what other nuts she might react to.)

Tired

I realize I haven't written much later. It's probably better that way. I've been pretty busy getting back into the working mom routine. I've been getting tired out after about 5 hours at work, which is good that I've committed to only 6 hour days. It's worse on nights when I don't sleep well, which is much too frequent. I maybe get 2 nights per week of straight 7 hours. The company is still wonderful about letting me leave early if I need to though.

We've worked out a schedule where Charles works from home Mondays and Tuesdays, so I go in to work earlier than I do the other days and get home early enough to go get the bigs from school, do snack, and cook dinner while he finishes up a full work day from home. Honestly, it's exhausting. I'll get a bad night sleep, get myself ready for work, be there for 5-6.5 hours, come home, get them from school, snack, play (which these two days have just been watching tv since I'm so tired), cook dinner, and help with bedtime. It's like being ON from 6:30am-8pm. Like I said, exhausting.

Then the other 3 days, it's getting up early to get ready before they are up, rush around to do morning routine before school, be at work for 5-6.5 hours, get home and hopefully be able to rest (since he should be home by 4 also), and then help with bedtime routine. At least in that schedule, I get to have a rest late afternoon. In retrospect, it might have been better to have the hard days be at the end of the week...

First week of work

I'm very happy with my first week of work. I fell back into the programs easily, which made me really happy. I'm working 6 hour days for now and there was only one day where I had to go home early, that was due to a really bad night sleep. I still feel extremely fortunate that I haven't ever had a seizure so that I can drive myself to work (and other places). It's been a busy week for me. I've had plans for 3 nights after work, mostly cancer support group type of stuff. I've been able to get ready and leave earlier in the morning than my planned schedule because Charles has been off due to the shutdown. So I'm not getting the kids ready for school anymore, at least not yet. And then I run off to my plans right after dinner and miss bedtime routines, so it feels like I haven't seen the kids much. Last night I was here for bedtime so I made sure to get lots of cuddles.

I was thinking I would wear my wig most days, but it makes me a bit hot. I still have scalp irritation so I have to wear the little skull cap underneath, which makes it hotter. So I've been wearing various hats too. I was hesitant to do this at first but sometimes while I'm at my desk, I'll go bare. I'm able to put some cream on and be a little cooler temp wise. At first, I thought maybe it would make some people uncomfortable but everyone knows what's going on and there have been some people that still come over and talk business as usual even with my bare head. Plus, I'm kind of at the back of the office now so I'm not right in the middle of the action. I do still put something on when I walk around anywhere though as to not catch anyone off guard.

I'll be rolling out new hats as I crochet more. I might also start using some of my multitude of fabric to sew some (gotta get back to pinterest!). I'm planning to donate some hats to the Hope Connections charity in Bethesda that runs a lot of free programs for cancer patients and their caregivers. They have a little "shop" of free jewelry and hats for cancer patients, just something to brighten their day.

Liam is having a harder time with school these days. I think the fatigue of going full days all week is finally catching up to him. He says the noise of the "stations" part of the day bothers him. He is melting down over the homework assignments, and then melts down about other things unrelated too. I think the last few days were worse because he was getting sick. He threw up in bed in the middle of the night last night. No fever or throwing up today, so we're hoping it was a random puke and not a puking virus that will make it's way through the whole family.

Young adults support group

If you can't tell by my time stamp, I'm up at 4am, been up since 1:30. Ugh. No sign of sleep coming soon. Kids will be up in 3 hours. 

Yesterday evening (technically yesterday since it's after midnight), I attended a support group for young adults with cancer. It was a smaller intimate group which was neat. It seemed easier to relate than the other group that was about 20 people. It's also a lot closer for me to get to and meets weekly instead of monthly. They have a group for caregivers too that I might make Charles go to. 

Might be a tired/short day at work tomorrow :(

First day at work

First day back was great. It was a milestone after finishing the treatment. It feels really good to get back to the normal routine and be in an adult (non-medical) environment again. Everyone was really nice and welcoming. I fell back into Revit and CAD more quickly than I expected, which was a pleasant surprise. I was even able to listen to music at the same time, yay!

I'm starting at 30-32 hours a week. I plan to do 6 hours a day, but I might end up going home early on bad sleep days or staying later on days when I feel rested. I'm so fortunate that my office is so willing to be flexible. I'm hoping that once the fatigue goes away, I can get back to 40 hours a week or more. As for now, IF the long term disability gets approved (still don't know yet), I can't work more than 32 hours a week or they'll terminate my claim.

I haven't decided yet if I'll be wearing my wig every day or not. A few people commented on how they like my hair and I came up with a quip on the fly when someone asked if it was mine. I told her "Yes and no. It's mine because I bought it!" She thought that was funny, so I think I'll keep that in my back pocket.

Charles is home from government shut down. He is looking forward to going back to work too. It's nice though to have him take over morning duty getting the kids ready for school. I think Liam is having a hard time with the change of routine, but overall the kids seem to be doing well.

More steroid. Blah.

The symptoms of brain swelling are back. Boo. Of course, I'm out of state this weekend and didn't bring the steroid with me (I thought I was done with it!!) but I was able to get an on call doctor to send a prescription to a local pharmacy. I, naively, assumed that since the radiation was over that the irritation was done and swelling shouldn't be an issue anymore. Wrong. I'm not a doctor so I guess I should listen to them. He tried to have me go back on the steroid Thursday when I told him about the headache coming back but I refused based on the steroid's side effect. Now look where I am, severe headache that doesn't respond to the pain meds and nausea/vomiting again.

Now that I'm back on the steroid, for who knows how long, I hope it kicks in and starts working! I don't want to miss out on even part of my first day back at work to be on a dumb IV for dehydration. I'm keeping up with the anti-nausea meds around the clock and trying to drink more fluids. It's hard though and I haven't been very successful today. I'm also concerned about being able to sleep, insomnia being the worst side effect of the steroid.

Okay. This can be over now.....

Weekend away

I'm on the train on my way to NJ to visit my parents for the weekend. I'm really looking forward to it and I'm sure it'll go by too quickly. Lots of relaxing and sleeping planned. Then dinner picnic Sunday when Charles and kids meet us halfway to pick me up. 

Then it's back to work Monday. It couldn't come at a better time. I'm so ready to be back. 4 months away from something you enjoy is too much. Plus, with all this political bs, we need my income. I hope the govt gets their act together soon. Charles is running out of things to keep himself occupied.

Unexpectedly sick

I thought side effects should be waning by now but I guess not. I was up spewing in the middle of the night with a headache to boot. I know, pleasant, but I'm being honest here. So I get to go in to the office this afternoon, the office I have an appt scheduled for tomorrow morning, for IV fluids and meds. I hope they can get the vein the first time!
*****************************
Update: I took a 2 hour nap before I went over to the office. There, I had a bag of fluids and IV zofran while I listened to some music and played games on my phone. They got the IV in on the first try. *impressed* I was able to eat a decent dinner, keep it down, help with bedtime for kids, and now just chilling and going to bed early.

PS. I am totally NOT impressed with our current weather. I literally just took the a/c unit out of our bedroom window last weekend and now we're hot again. It's not supposed to get back down to 70's until next week. I have all these great cold weather hats I want to wear! And one that I have no motivation to finish with this hot weather around.

PPS and not related to this post at all: I trimmed down the mohawk. It was barely blue anymore anyway and now that the irritant of the radiation rays are absent, I wanted to give my whole scalp the chance to grow back together. We'll see how it goes. I'm expecting to be wearing hats and the wig through the year til next Summer. By end of March, I will be done with the maintenance chemo cycles and the hair should be able to grow back a little thicker.

"Recovering"

It seems counterintuitive to recover from a treatment but that's what I'm currently tasked with. I took the last 1mg of steroid on Monday along with the last chemo pill until next month and last radiation treatment. I'm having steroid withdrawal symptoms; insomnia (still), heartburn, and headache. So it's 2:30am and I just took a small handful of pills to try to get back to sleep. 

Discharge nurse said side effects are cumulative so it's possible they could worsen or just appear out of nowhere in the next two weeks. Yay. Hear the sarcasm. More fatigue, headaches, skin irritation, digestion issues, insomnia, etc. Then in November, lets see how I handle the higher dose chemo. Woohoo (also sarcasm).

With Charles on furlough until who knows when, I am even more excited about getting back to my own job. A friend asked tonight if I like what I do and I was probably overly emphatic with my answer. I love my job! I enjoy my daily tasks. I like my coworkers. I love learning new things. I'm really looking forward to getting my certificate (april) so I can be a full time engineer. Plus, the office is about 4 miles from our house which is super convenient. And I'm so grateful that I have this amazing job to go back to. 

I have my mind set on getting back to my 5k training. Before my surgery, I got up to a two mile run at 10 minute mile avg. This time, I'm starting off in WAY worse shape. I get winded walking the bigs to school and that's .5 mile loop at five year old pace. 

I'm trimming down the hawk in hopes that everything can TRY to grow back in together. So this is what's left. Doesn't even look blue anymore. I've heard that hair can grow back differently after something like this. Maybe I'll have curls this time ;) although I hope not. I have no idea how to style curls!!

The back is already growing back but then again it didn't fall out in the first place. I had shaved it for the hawk about 4 weeks ago. So sexy, right? Think I can rock a g.i.jane??

100th post

Holy moly! Who knew I had so much to say! 100 posts since May and at this moment, more than 28,000 views. I can't believe it. I'm so honored that so many people are interested in my story, keeping up with me, praying for me. It's humbling.

Today is the first day I have the morning to myself. Charles had to go in to work for 4 hours, even though the gov't shutdown is in effect. We could be spending a bunch of time together this week! I have a to-do list for today that I'm already knocking stuff off from.

Of course, it's supposed to get up to 80* today and possibly 86* tomorrow, a week after I took the a/c unit out of our window and commented on how glad I am that Fall is here so I can wear my Fall/Winter hats. Silly Maryland weather in October!! This is why people get sick.

I took some pics of me and kids this morning to share.

Liam - 5 years old

Ellie - 2 years old

Grace - 5 years old

FINISHED!... for now

Last radiation treatment is over and I took the last chemo pill this morning too. Woohoo!! 42 day treatment course is OVER. I brought home the mask to have Charles' sister "art up" and donate to a charity that auctions them off and sends money to head and neck cancer charities. The office gave me a "cute" diploma for finishing. It's not one that any strives to achieve, but it was cute all the same. I took in some fruit and veggie platters for the staff as a thank you. Then we went out to lunch again. We also have a movie rented for tonight. It does feel like a weight lifted off my shoulders to not need daily appointments or an alarm set to take medication in the morning. I'm DOWN to only 2 required pills a day now! I think tonight, I'll shave down the hawk (gasp) just so that my hair has a fighting chance of all growing in at the same rate now that the main irritant will be gone.

The next step is scheduling the next rounds of oral chemo. It'll be 5 straight days of pills and then 23 days off. That will be 6 rounds of 4 weeks cycles. I am going to push off starting by a week so that I can avoid taking it during Thanksgiving and Christmas, so the first week will be November 4th. My next follow-up MRI will be end of November and then every 3 months after that.

I've updated the care calendar through the end of the year. I've put on some requests for meals and help with the kids during chemo week and the weekend after. It is hard for Charles to keep up energy and activities when I'm in bed all day. If you want to help, take a look and sign up for something:

https://www.carecalendar.org
Calendar ID: 151231 
Security code: 7678 

I'm not sure yet how I'll react to the higher dose meds. It's hard to tell if my current side effects are from the chemo or the radiation, so I don't know which ones will completely dissipate as time goes on or will return with the maintenance chemo.

I'm going back to work at least part time a week from today. I'm really looking forward to getting back into it. I miss the adult time and want to get back to my "new normal" as quickly as possible. I haven't decided if I'll be wearing my wig most days or if I'll rotate out other things. It takes more time to put on than a quick hat or wrap, but it at least would be stable for coworkers to see daily, especially the new ones I haven't even met yet!

So for this week, I just get to rest up, try to nail down a good sleep pattern, and deal with the emotional side of all this. Fight or flight response is wearing off and I'm not sure how to deal with it yet. Then I get to go visit my parents solo for the whole weekend. That's right, moms, I get a weekend away sans kids. Sleep in a king bed to myself with no one barging in at 7am, no having to get meals and snacks on the table, no changing diapers. And my parents are awesome, so we will be sleeping, eating, and getting massages. Oh yes, be jealous.

Now what?

This might seem like a dumb post, but basically I'm thinking, what do I do once the treatments are over? It's kind of a rhetorical question in that I will do what I have to and want to: recover, work, take care of kids, get into the next phase of "normal" while doing the extended chemo treatment every month.

But I've found my anxiety is just through the roof that last few days. Everything seems "urgent" like if I don't do it right now, write it down, or tell someone something, it just won't get done. I'm usually a lists person and even keeping one up to the minute updated on my phone isn't cutting my anxiety about it. I'm thinking this is stemming from the end of treatments coming up and my uncertainty of what the new normal will look like.

For so long, since June 4th really, we've been in FIGHT MODE. I do what I need to do and I get through it. We're coming up on my last radiation treatment and last chemo pill for this round (also, last steroid!!) on Monday. 3 more days! I'm so excited but also haven't emotionally dealt with what was going on because I was so busy just DOING it; making calls (SO many calls), going to appts, taking meds, sleeping, laundry/cooking/etc. Whatever it was, always seemed logistical and on the list. I could cross it off, even if it was "get meds to stop throwing up" it was cross-off-able.

Now I have to emotionally deal with my diagnosis and treatment. It's a good thing I have an appointment with my therapist on Wednesday because I have no idea how to channel this influx of confusing thoughts and energy. I'm sure the rest of the family is picking up on it too.

Rude strangers

This random rude lady at the pediatrician's office really has me riled up. I won't be able to go to sleep until I can write about it to try to let it go.

So recap: Husband, kids, and I are at the pediatrician's office for their yearly well visit this afternoon. I'm wearing an obvious cancer hair loss head covering. Random lady in the waiting room comes up and says something like "Are you in cancer treatments? My mom is just finishing hers. Can I send you something?" I was so taken aback and didn't know how to answer. This has never happened to me, so like a dumby, I gave her my email address thinking maybe she would want me to talk with her mom.

Fast forward to later tonight. I get an email from her, a very long one. It gives me her own whole life story and her mom's journey with a completely unrelated cancer, then proceeds to outline (thesis style) about the "series of emails" she's going to send me about all the research she's done about it because she wants to spread awareness and education. Yes. That was what she actually sent to me very verbosely.

My response: I appreciate you're spreading your knowledge to help advance people's understanding. But I was actually really taken aback by your forwardness to a stranger. I'm not in the right place that I want to accept unsolicited advice from someone I don't know, especially talking about it in front of my young children. Good luck to your mother and thanks again for the thought. I hope you understand.

I'm not one to be rude, but I'm now thinking of ways to respond when this happens again. Part of me wants to have the balls to say something like "You're so rude, especially in front of my kids. Why do you think you can invade someone's privacy in public? Leave me alone." But I don't think I'd be able to do that unless they start in on something that I can't get them to stop talking about in time. I WOULD be willing to just say "STOP. My children are RIGHT HERE." But I have come up with my 30 second "leave me alone" speech that I'm more comfortable with and have memorized:

I appreciate that you're trying to empathize with me, but I won't talk about this with you especially in front of my family. I don't need your advice and I can't shoulder the burdens of someone else's struggle. Leave me alone.

I feel that's fair and polite enough that I won't beat myself up for crossing my own moral "bitch line." I would hope that it would at least make them think about how it was not right to do it. I find it akin to touching a pregnant woman's stomach or the person's newborn infant unsolicited. Really? How dare you cross such a private line?

There ARE ways for strangers to recognize and help. It would be nice things that decent people should do anyway; hold open a door, offer a seat on the metro, etc. Talking to a stranger is NOT helpful, no matter how well intentioned they are. And you'd be surprised at how no one will give up a metro seat, or will even purposely squeeze in front of someone who is obviously going through cancer treatments (or even an obviously pregnant woman). Part of this journey opened my eyes to the good in humanity and part of it has now opened my eyes to how inappropriate people can be.

***********

Update: She actually responded to "apologize" but ended up still pushing her wordy agenda. I'm choosing not to respond at all even though part of me wants to really tell how even her response was inappropriate but obviously it wouldn't get through anyway.  I just have the mental task of trying to let this go so I can go the F to sleep!!

One week left!!

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.

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.

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!

**********************************************************

I had a couple extra imaging tests this week that were unexpected. The last few days, I've been getting frequent heart palpitations, winded going up stairs, and generally more tired. The oncologist wanted to make sure I didn't have a blood clot in my lungs, so I did a chest ct with angiogram. The iodine for that is not good.

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!

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.

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.