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.

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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!

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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.

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!

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!

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.

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.

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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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.org/logon/151231 and enter
the following information in the appropriate spaces:

     CALENDAR ID   :   151231
     SECURITY CODE :   7678