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Thursday, September 11, 2014

A Letter To My Daughter

My Dear Anna,

I can't believe you will be 15 weeks old tomorrow.  You have already grown so much.  It seems like just yesterday you were a tiny 6 lb 2 oz, yet you are now roughly 14 lb.  We have a doctor's appointment in a couple of weeks, and I'm terrified by what the scale will say.  How could you have grown so big so fast?

Life has not been fair to you so far.  What should be a fun, joyous time of us learning each other, has turned into a fairly hectic, somewhat stressed time overshadowed with illness.  You, my darling daughter, have been a trooper through it all.  While other babies only sleep for 40 minutes at a time, you sleep for a minimum of 7 hours each and every night.  You've had nights where your dad and I have had to keep you up late so we can accomplish tasks, yet you haven't complained.  You've had long days spent at the kennel with barking dogs all around you, yet you're generally quite happy about it.  Sure you've had your bad days, but what baby doesn't?  You're starting to teethe, and you sometimes have tummy troubles, but all in all you're wonderful.

My favorite times are those where you just want me, your Mommy.  Today was one of those days.  You just wanted to see me and be around me.  Daddy held you this morning, yet you cried until I was in your sight, talking to you.  Mary Beth, our groomer, held you this afternoon, and while she can usually make you smile and laugh, you cried until you were back in my arms.  I was greeted with giggles and snuggles, and they warmed my heart.

I want to apologize if I seem stressed.  I want to apologize for not being able to dedicate all my time to you.  I worry constantly that these stresses may affect you negatively in the long run.  I hate the days where I am so exhausted that all I can do is hand you off to your dad and say, "Take her.  I'm off duty."  It generally has little to do with you.  More often it's simply life that's leaving me so tired. 

Know that I have loved every moment with you.  Even the moments where you're screaming and I can't figure out why I tend to find humor in.  Even though for the first few weeks I was pretty sure you only knew me as Moo Cow.  Even though I've had exhausting days where it's all I can do to nurse and change you, I've loved every moment.  Thank you so much for being so wonderful.

Love,

Mom


Mom Update: Chemo Round 2

If you asked Mom about her experiences this round compared to last round, she'd tell you this round was much worse.  She'd say she's sicker and in more pain.  She'd tell you it's harder for her to catch her breath, and she seems more confused.  However, if you were to ask me or Hans, we'd have a far different story to tell.

Going into the first round of chemo was difficult.  She had that the week after her stint in the ER, and she had her port put in the day before chemo started.  She was easily confused, and her mental status was like that of a 4 year old (something which is usually a joke regarding my mom, but in this case was quite serious).  She cried due to the pain she was in, and I actually called her doctor, concerned that there was a leak in her port (there wasn't).  She begged to go back to the ER in the hopes they'd remove her port.  She felt a great deal of nausea, and while she never actually vomited she came awfully close.  And then, about a week after chemo, she started to feel better.

Suddenly, she was more of my mom.  What she said made sense.  The way she moved seemed easy (or at least easier).  She went out for lunch with guests and really seemed to do well.  We hit our first chemo speed bump (hair loss), but she seemed to take it in stride.  She got excited over some of the head wraps I got for her, and she just seemed to be happier.  Oh, and she was taking fewer pain meds.  Instead of the maximum dosage of Percoset, she started asking for very small doses of Tramadol.  These were all great signs.

And then we had to start chemo round 2.  Some things were the same as before.  She was beyond tired at the end of each day.  The excess fluids they gave her caused her to swell, and that caused some significant pain.  She definitely experienced nausea (this time with vomiting), but everything seemed to a lesser degree.  She never did need the highest dose of pain meds.  While she needed the nausea meds, she didn't have nearly as hard a time taking them, and she never stopped eating completely like she had before.  She could always stomach a smoothie or popsicle or something.

Now, she's almost back to her normal self.  She's eating regularly (and voraciously).  She's asking me to take short walks with her (great for recovery), and most importantly she's completely coherent.  In fact, she's even planning a girls night with a couple of her friends.  I'm excited for her.

In the mean time, Hans and I finally got her moved out of her apartment, and now we just have to find a spot for her stuff.  Life is busy, but better, so that's good.

Thank you to everyone for all your continued support.  It means so much! 

Monday, September 1, 2014

A LONG Week

Well, it has been a whirlwind of a week!  I'm well fed, exhausted, and well-loved.  Essentially, we had a lot of visitors in a short amount of time.

First, there was Hans' old roommate, Dan.  Dan was only here for 2 nights and 1 full day, but he was a much-needed escape.  Whenever he or my old roommate come to visit, I'm instantly transported to those college days.  I'm able to relax a little and forget about bills or appointments or obligations.  It's lovely.  I always try to clear my schedule when I know they're visiting, because I know my only focus will be on them.  The three of us ended up spending some time in Williamsburg, and I had a lovely nap in the car.  Just perfect.

Next, my aunt and uncle flew in from Arizona.  I hadn't seen them in 6 years, so this was a great occasion.  They really helped me out by watching Anna when I had a work emergency, but they were also a much needed break for Mom.  I know she really enjoyed seeing her sister and brother-in-law, and that got her up and moving some more (but more on that later).

Last, Hans' parents came to visit.  They've come down a few times since Anna was born, and it's always fun to see their reactions when they see how much she's grown.  Of course, Anna is their third grandchild, so sometimes it's just comparisons, but I think they like seeing the progress.  My MIL and I went shopping at a thrift store for baby clothes and had a little too much fun, and all in all it was a pleasure seeing them.

And then there's Mom.  Mom has been wonderful this past week.  She's gone out for lunch, she's been up and moving around, she's barely needed pain meds, and most importantly she's been eating.  Her appetite is still small, but she's eating regular meals.  We've pretty much switched to a vegetarian diet, although she's still has some seafood-based dishes from time to time.  Now I just have to figure out how to start cooking all these fantastic dishes we've tried recently!

So, like I said, it's been a long week, but it's been a good one.  Mom starts her second round of chemo on Wednesday, so we'll see how she progresses.  Here's to hoping for the best!

Sunday, August 24, 2014

Mom Update

There are probably about 10,000 things I'd love to chat about right now, but the thing that's at the forefront of my mind is Mom.  So, it's time for a Mom Update.

Mom started chemo about a week and a half ago.  She had a port implanted on Tuesday the 12th.   She was really having an off week due to pain meds and pain in general, so she was a little confused when they did the procedure.  Then, the next day she started chemo, so that was kind of a miserable week.  She hurt, she felt sick, she was still healing from the port.  She kept telling us something was wrong with the port, it shouldn't feel that bad, and we had to try to explain to her that the pain was most likely because of chemo and her healing body.

To her credit, she tried to eat a little, but she was hard pressed to find something that wouldn't make her sick.  She could sometimes handle a little watermelon or a bit of soup, but nothing much, and she was weak because of it.  Hans and I kept trying to find things that might sound appetizing to her, but there wasn't much.  I think one day all she had were two lime popsicles. 

Then, at some point last week, there was a shift.  The pain started to subside, she was taking fewer pain pills, and her appetite started to return.  On the way to the doctor's office last Wednesday, she asked if we could stop at Starbuck's for a smoothie.  She downed it in about 2 seconds, and as we returned home she asked for another.  Yesterday she had two smoothies and a bowl of orzo soup with garlic bread.  Today, she didn't even wait or ask for me to make her something.  I came downstairs and she'd put some stuffed spaghetti squash in the oven.  And that was after having a pancake and some fruit!

So, needless to say, things are going much better this week.  She's still in a significant amount of pain, and she's still on meds, but something seems to have shifted.  I'm thrilled she's eating, and I love that she's up and about again.  It makes life a little easier.  Well, in reality, I actually have to tell myself not to worry too much about her, because I'm constantly worried she's doing something she shouldn't.  Let's just say I'm learning to pick my battles.

So, all in all, it's been a good week.  The meals that friends and family have prepared have been a God-send, and Mom really seems to be enjoying them.  I know I'm going to have to start making more meals, and I'm terrified, but at least I know of a few things she might like!  Here's to good weeks!

Monday, August 18, 2014

Cloth Diapering

Before Anna was born, Hans and I made the decision to try cloth diapering.  We said we'd do disposables when she was first born and switch to cloth once she'd grown a bit.  By the time she was large enough to start cloth, though, I was feeling two things.  The first was guilt for how many disposables were ending up in our trash each day.  The second was complete and utter fear for the extra work cloth would mean.  In the end, though, the guilt won out and Hans and I started the cloth diapering routine.

We stuck to it for about a day and a half and then we found out about Mom.  While she was in the hospital I just couldn't fathom the added pressure of figuring out cloth diapering, so we quickly switched back to disposables, but as we started to get into a routine with Mom I started to feel guilty about using disposable again.  So, it was time to go back to cloth.  In an effort to talk about something other than Mom, I figured I'd share with y'all my experience so far.

Simplicity
First off, it's super simple.  Yes, it requires us to do a little more laundry, but we don't really worry about folding anything.  Once they're done washing and drying, we just throw them in a drawer.  The only other problematic thing is that poopy diapers have to be rinsed off before washing, and this can cause issues if we encounter a poopy diaper while in public.  At home we have a diaper sprayer, so that makes it easy, and in public I'll either wrap up the diaper until I can rinse it at home, or I'll rinse it out in a toilet somewhere.  It's no big deal.

Leakage
I've heard some people complain that cloth diapers leak a lot more than disposables.  I think this really depends on the diaper.  My one recommendation: double gussets.  We've used three different brands and two types of cloth diapers.  Only one of them has been fairly reliable about not leaking, and it has double gussets.  Part of that is because Anna has skinny, little legs.  The other side of that is you do have to make sure you're using the diaper 100% correctly.  Whenever I put it on Anna, I have to double check that everything is covered.  This takes about an extra 5 seconds, so no big deal.

Types
It is easy to get lost in the different types of cloth.  There are flats, pockets, prefolds, all in ones, and all in twos.  Then there's hemp, cotton, microfiber, bamboo, wool.  Further still, there are Best Bottoms, Grovia, Bum Genius, Lil' Helpers, and many more.  Choosing what's best for you can be difficult.  I actually went to a two hour class offered by a local shop to learn more about them.  Best. Decision. Ever!  I still don't know much about the different fabrics, but I know what I like to use the best.  I love Best Bottoms, All in Twos.  They're double gusseted and easy to transport when I'm out and about.  Plus the inserts are interchangeable with Lil' Helpers, so I have a few more options. 

Cost
Yes, it's true.  Cloth diapers seem more expensive at first.  One could easily spend $500 on a full set of cloth diapers, and that's way more than a $20 box of disposables.  But, look at it this way.  That box of disposables may last you 2-3 weeks (if you're lucky).  Those $500 cloths will last you until your child is potty trained.  And yes, you will spend a little more on water, but it's minimal.  Most people say it's about as much as having an extra person showering in your house each day.  So, not too bad!  I'd say the trade off is worth it.

OK, I know some of this info may be over some of your heads.  If you haven't looked into cloth diapering, it can all seem a bit overwhelming.  I promise to some day do a post explaining everything I've learned (although I'm still learning).  Just know, though, it's really not that hard.  I mean, if I can do it, anyone can!

Wednesday, August 13, 2014

An Update

First, an update on me.

I'm exhausted.  This has been a crazy week of running errands, packing, and caring for Mom and Anna.  I am also, however, completely and totally amazed at how wonderful people can be.

Last Friday, I put out a little plea.  It wasn't anything huge for me, and I really didn't expect to get much feedback.  The idea was that, if people wanted to help, I'd tell them how they could help the most.  The response was amazing, and I felt so loved.  To each of you who responded, THANK YOU!  Even if I don't end up accepting your offer, the simple fact that you reached out to me was a huge help.  Knowing that I'm not in this alone is a huge help.  Tonight, a classmate I haven't really seen in 10 years brought dinner for me and my family.  She made sure that it met dietary restrictions, and tried to make it something that would be easy on the stomach while going through chemo.  It was so wonderful, I just wanted to cry.  Thank you, thank you, thank you!

Mom

Mom has good days and she has bad days.  The only thing we can really do at this point is take it one day at a time.  This was not a great day.  She was in a lot of pain.  Monday was a great day.  Maybe tomorrow will be a good day again.

She had a port implanted yesterday, and she started chemo today.  This means that, more often than not, she's just exhausted.  We're really hoping that the chemo will take effect, and, even with chemo symptoms, Mom might experience some relief from some of her ailments.

Anna

Anna is my little ball of sunshine.  She's my source of joy in a sad time.  She's coming along nicely too.  This week, at least, she seems to be in a fairly good mood.  She's sleeping well and eating well, and growing well.  The only thing I've really noticed is that, come evening, she's tired and cranky and ready for bed.  That's OK, though, because I feel the same way.

Anna loves bath time best of all.  She kicks and smiles, and the other night she laughed for the first time.  She's enjoying more and longer awake times, and she loves being able to look around and see as much as possible.  She makes me laugh, and that's quite a good thing.

The dogs

Mom's dogs, Kyla and Alex, are adjusting to their new life quite well.  They're getting used to not chasing the cats (that's a hard one for them), and they're being quite sweet.  Cody and Lollie (my sweet, sweet kids) are being extra snuggly and loveable.  Whether that's because they know I'm stressed and need the love, or because they're jealous, or because they're stressed and need some love, I'm not sure.  Whatever the reason, I'm loving their attention.  I feel bad, because I feel like they're often the ones who end up neglected, but those snuggles each night and morning are just perfect.

Hans
Hans is so supportive.  I know he's tired and frustrated.  I know he wishes we didn't have to worry about all this.  Through all of this, though, he's right on board.  He's been helping me cook and clean and transport dogs to the kennel.  He'll wake up early with me when there's an early-morning doctor's appointment, and he's always happy to take Anna when I just need a break (even if she's screaming).  He's just perfect.

Actually, just so you don't get too jealous of my awesome husband, I have to share this story:  This morning, he was helping me get out the door so Mom could get to chemo.  He poured me a smoothie and sent me on my way.  When I got home 8.5 hours later I noticed one thing.  He'd left the door to the fridge wide open.  Irritated does not even begin go describe my anger.  I had to throw out so much food!  Oh well!  I guess I can forgive him.

So, we're all doing OK, but we're also all preparing for what's to come.  Wish us luck.

Friday, August 8, 2014

Back To The E.R.

Well, surprise.  We're back in the E.R.

When Mom first came back home, she was doing amazingly well.  She had been discharged early, because she seemed so strong.  As the days past, she continued to do well.  Apart from a medication issue with Percoset (she reacts oddly to it), she seemed OK.  On a scale of 1-10, her pain was holding at about 2-4 (normal for post-surgery), she was cheerful, and while there were a few little kinks and hiccups, everything was fine.  If she had a bad day, that could generally be attributed to something (a long day the day before, hard PT, etc).  That was different today.

Yesteray, she seemed to be in a bit of pain, but Wednesday was a big day, so I didn't think much of it.  Today, though, was different.  Today, she was claiming to be at a level 8-10 on the pain scale.  In addition, she was disoriented, had trouble remembering recent things, couldn't repeat simple things back to me, and was a bit combative when I tried to get her out of bed.  When here physical therapist arrived, I asked her to evaluate and give me an opinion, and she said we should head to the E.R., so here we are.

It's been 5.5 hours, and I'm exhausted, but we finally have a few answers.  I was worrying about a whole slew of things: more tumors, brain metastases, stroke (although not all the symptoms for that one added up).  Here's the result:

-The back and spine look good.
-Not much has changed from an oncology standpoint.
-The biggest change is a bit of growth in the mass on her skull, which has caused a bit of swelling.  That's causing the confusion.  Hopefully some steroids will help.
-There are signs of a UTI, so she's on some antibiotics

They're sending us home, and we're to follow up with her oncologist on Monday.  From there, she'll have a port implanted, and she'll start chemo next week.  We should know after the first few treatments whether or not the cancer is responding.

On Another Note
So many of you have offered love and support, and I am so grateful.  We are eternally grateful for the outpouring of love.  Many of you have also asked how you can help.  Here's the problem: I hate asking for help.  I doubt I will ever feel comfortable just calling you up and saying, "Hey, could you lend a hand?"  It's just not how I function.  However, I will take this moment to list a few things that we could really use.  If you can help out in any way, please let me know.  Don't hesitate to call, text, or email, or even just stop by.

We could use:
- Meals.  I'm actually somewhat prepared for food, but not the food she needs that's really supposed to help with cancer.  Not only that, her tastes have changed dramatically, and she's not eating much.  I'm trying to switch us over to a plant-based (mainly vegetarian), all organic diet.  The hardest part of this is researching what to make (I've always been more of a meat and potatoes gal) and then actually finding time to make it.  If someone, anyone, wanted to make even just one meal and then hand over the recipe, I'd be so appreciative.

-Help with Anna.  I love caring for her.  I love the time I have with her.  I particularly loved today's bonding time (dancing to classical music followed by snuggles on the couch).  However, I also love having some time to clean or prepare meals or go to work or go to the gym.  If anyone would be willing to pitch in for an hour or two (or more) each week I'd probably be brought to tears.

-Help packing and moving.  Mom moving in with us means more than just packing up some of her belongings.  It means we have to clean out my old office so we can clean out her bedroom.  Then we have to pack up everything in her apartment, decide what to keep and what to trash, and bring some of it back to our place.  Some stuff may end up in storage, and some may just be sold.  However, it's a lot of work, and with Anna it's not getting done as fast as I'd like.  I'd love some help.

-Care for Mom for some time in September.  Hans and I are trying to make it to a conference for the kennel the third weekend in September.  It's in Chicago, which means we'd probably be gone for about 5 days or so.  The problem is, we can't leave Mom alone that long.  Not only that, she won't want to be without her dogs, and we need someone to take care of her AND her dogs.  Having someone to check in on her throughout the day and stay with her overnight would be the most amazing gift.  Heck, even if it was a different person each night it would be amazing.  Please!  Can anyone help?

-Positive thoughts.  The reality is Mom might die.  Actually, the odds are that she doesn't have much time left.  I know this.  She knows this.  Her doctors know this.  However, we don't actually need to hear it.  I don't need to be told to prepare myself.  I don't need to be reminded.  The only way I'll actually make it through this is if I remain in some sort of state of denial.  Please let this continue.  Please, no more "I'm so sorry" or "Oh how awful."  It is awful.  It freakin' sucks!  I really don't need you to tell me this.  I just ask, if you don't have anything nice to say, don't say anything at all.

So there you have it.  That about sums it up.  Thank you!