Friday, December 19, 2014

Dec. Medical Update

While December is the month of holidays, it's also been a busy month, again, for me and doctors.

Not all the appointments have been for me - not only do I juggle my appointments, but I juggle the kids' and granny's appointments as well.

And 2014 has been the year of lots and lots and lots of appointments. So I thought I'd give an update. I know, it's boring to read, but documenting things here helps me keep track of things, which I need!

For a while now I've been having some issues. Without going into details, I can sum it up as phantom limb pain in my chest area. Basically my boobs have been hurting. Except I don't have boobs. And it was kind of freaking me out because it has just been getting worse and worse. So I went in to see the doctor. It turns out my muscles are spasming and tight. Which is inflaming the nerves, and so when the brain interprets the signals from the nerves, it goes back to what it knows. Next week (nope, I don't even get to take Christmas week off!) I am going to my favorite occupational therapist for an evaluation and a what to do next plan.

This is both awesome and not awesome. My therapist is great. She has helped me in the past. But, the thought of doing therapy several times a week just makes me want to cry. I'd like to not have to go see a doctor. Ever. Again.

Anyway, if she thinks therapy will help, that's the route we'll take. If not, back to the doctor? I'm not sure. I didn't ask. Because I'm assuming she can help. However, the "joke" now is how can you tell I'm in pain? I'm breathing! (But it's not usually a lot of pain, but it's pretty much always there.)

In addition, most days I've felt like I've been run over by a bus. I've been tired for so long I can't remember not being tired, but since summer it has felt worse, which isn't saying much because it was an issue before then. I constantly feel like I'm right on the verge of getting some virus - do you know what I'm talking about. The day before a virus hits, and you kind of think am I getting sick? Or not? Because it feels like it might be starting, but it's not quite full blown. That has been my normal for a while now. And the brain fog has at an all time high as well (though my migraines are back with a vengeance which isn't helping). And then I've been randomly popping low grade fevers which just kick my butt even more.

I kind of started to wonder if it was all in my head - like psychosomatic. Or maybe I was depressed - because I know that can cause one to feel tired, run down. Except I don't feel depressed - I feel overwhelmed, exhausted, run down, beat up, and moody - but not depressed. I've struggled with depression before and even if I don't want to admit it, I usually know something is going on. But I don't feel that way.

I know my iron levels at last testing weren't stellar. But they haven't been stellar for a long time and things have just slowly and progressively felt worse and worse.

Today was my regularly scheduled check-up with the oncologist. I saw the PA (who by way, is a wonderful person) and so I just laid it all out on the line. It all just came spilling out - I told her everything, how I was feeling, I also said something along the lines of "I mean, sometimes I wonder if I'm not losing my mind. Or maybe it's all in my head. Or I could be depressed. I don't feel depressed. But you can be depressed and not feel it. It's tricky that way. But if I was depressed or if it was all in my head would I be wondering if it was those things? And, oh my goodness, what is wrong with me?"

And my PA listened, nodded along, and asked some questions. We talked about iron, she asked if I had other tests run (which I had and could give her results for) and then she said, I think I know what's going on here. And basically we are talking about chronic fatigue and some adrenal issues. Which I've learned since sharing with others, that a lot of doctors won't talk about or believe it's "real" or whatever, so more points for my PA.

Anyway, we have a plan. Which will start with me doing 6 days of steroids. I took some steroids during chemo. I can already tell these are going to be some intense, crazy 6 days. I think I'm starting them Friday (though maybe delaying until after Christmas, but I kind of don't want to because I'm so freaking tired). Then after that I'm starting a sleep aid that will help me sleep, help with the insomnia, and help reset my circadian rhythm to something more normal.

Needless to say, I've got pretty much all my hope in these two baskets. I want this to work and I need this to work. So I can function. So I can drive myself and 4 other people to all our doctors appointments ;-) But no, seriously, I need energy and I need to feel good. I don't need the energy of a preschoolers. And I don't need to feel great. I'm just asking for more than I have now and feeling good. Because I just feel like if we can't get a handle on it, some thing's going to give.

(I wrote the rest of this a few days ago, and am now adding this part before I publish)

We also ran iron levels and I'm almost in tears to tell you that I just found out,f* not only did they not hold steady, they dropped. So. My almost non-existent iron levels are now about half of almost non-existent. When the doc called with this news I seriously wanted to burst into tears. Then I wanted to say f*&k a lot. Because more than sad, I am so incredibly, incredibly, beyond how I ever thought I could feel, angry. I'm just angry. Which means even if the treatment the doc and I planned - the steroids and some sleeping meds - even if they work to perfection, I will essentially still be tired. Not as tired, but tired. And I'm so absolutely pissed about this.

So, I guess it's time to pursue possibly almost killing me - which I'm half joking, but half not - because I think (though this is what the allergist I met with earlier said and I would need to consult with someone else to get an actual plan) they will pre-admit me to ICU, pre-dose me with lots of meds and then give me iron and keep treating reactions as they come and keep giving me iron and assume that I don't stop breathing. But he can't do it and I will need a new doctor, who specializes in this and maybe they'll say no, no, we won't be that crazy!

So. Boy. That sounds like fun.

Anyway, I'm going to temporarily try to say screw it all. Tonight we start baking cookies. And we will probably continue to bake until Christmas Eve.  But my girls are going to help me. And this is our tradition. And I'm going to be happy doing it. So that is how it shall be.

Have a good Friday friends!

And happy Hanukkah, Merry Christmas, Happy Kwanza, and if I don't come say hi for a while, Happy New Year!

Wednesday, December 17, 2014

Some Advice for Hard Times

There is a crazy reason this post has come to be - but basically I wrote it in a dream last night and when I woke up I remembered the dream and I remembered moat of what I wrote, so I thought, I should really blog this.

But I also hesitate, because, well, often times I feel like when I do give advice it can fall short or not be a good fit, but this time, I'll let my insecurities go and try to say what is in my heart (and my dreams!) Also, I think the holidays can be an even harder time

And naturally, all my thoughts are coming primarily from my experience with going through cancer.


Dear Friend,

I know you are going through some hard times right now. I haven't been in your exact shoes myself, but I've been through some of my own hard times, and here is some advice I have for you.

Know that even during hard times, there can be moments of beauty. These moments won't make up for the hard times. The won't erase the pain, or the hurt, or the sadness, or the hardness of it all. But these moments will be good and happy. Embrace them. Smile when they happen and hold them close to your heart. Embrace them and let them be what they are. You will still feel sad, tired, sick, pain, etc, but for those moments you will also feel happy, thankful, and it will be nice.

Which leads me to my next thoughts for you: allow yourself to feel whatever you are feeling. Sometimes we want to stuff the bad, sad, unpleasant down and ignore it. We want to put on our happy, smiling faces, and pretend like every thing's wonderful. But you don't have to. It's okay to feel sad or beat up or angry or however you are feeling during this hard time. Your friends won't be mad, in fact, they want to help you. When they ask how you are doing, they really want to know. It's okay to show the world that everything isn't wonderful all the time.

At the same time, sometimes when we are in difficult times, it's hard for us to be happy or to celebrate. But it's okay to celebrate, even in the midst of pain or loss or whatever is going on for you. We as humans are amazing in that we can often feel many emotions at once, and usually half of them are complete opposites of the other ones we are feeling. So you can be happy. You can be sad. However you are feeling, honor that. Be true to yourself and your feelings.

Get good people around you. Sometimes during hard times, we tend to pull away from our friends and family. And while it can be healthy and good for us to be alone for awhile, but don't be alone always. Find some people who will just come be with you. Not necessarily to take you out, or keep you up hours with conversations, etc - sometimes we just need our friends to be with us, no words needed. Gather those friends around. Tell them, hey, I need you to just come and watch tv with me. I don't feel like talking, but I don't want to be alone. People will do that for you. Well, you might have to remind them you don't feel like talking a few times, but they'll get there.

Speaking of having people in your life, get a few people - close, close friends or family (for me, it's my husband) and give them permission to tell you to snap out of it, but only if you really (and I mean really, really) need to hear it. Choose this person(s) wisely though because they'll be walking a fine line should they ever have to say something. A friend* once told me she allowed herself to have a few laps in the pity pool as she needed them, but treading water in the pity pool was not allowed. This is the deal I have with my husband ... I get my laps in the pity pool as I need them, but if I start to get stuck in there, he can give me a (gentle) nudge.

And through all of this, just take it a day at a time. An hour at a time if you need it. A minute at a time if that is where you are at. And when you do that self-talk, pretend you are talking to your best friend. Don't be down on yourself. Don't tell yourself that you shouldn't be feeling/doing one thing and that you should be doing/feeling another thing. There are no should's or shouldn't's. Let go of the woulda, coulda, shoulda's. You have enough on your plate. Let the guilt go. You can't go back and change the past. And today, all you can do is what you can do. Some days that will mean you do the bare minimum to get through the day. And that is okay.

Now a special note to the parents. As parents, we often want to be strong for our kids, or we don't want to cry in front of them. My advice? Cry in front of them. Be honest, say you are sad or scared or sick or however you are saying. That's not to say you will sit down with your 3 year old and talk to him like he's your best friend, or that you will do the same with your 16 year old, but still. Be honest. Your children probably know something is going on. They can probably sense how you are feeling already. And children, when left to fill in the blanks, often do so in ways that are worse than the truth. Not only that, but you'll be teaching them that it's okay to have emotions. If they see you process your emotions in a healthy way (notice I didn't say in a perfect way), they will learn to do the same.

Here's the sucky truth, life is not fair. It just isn't. I wish it could be, I wish I could take away all the hurt and pain and sadness and sickness. I can't. It's not easy to get through. And not every story has a happy ending. But above all else, during these times, you have to just stay true to you, to how you are feeling, to what you are thinking. I can't promise sunshine and rainbows. I can't promise no rainy days. But surround yourself with good people and allow yourself to feel all the emotions - even when they are all over the place or they are conflicting with each other - it's okay. It's not a sign of weakness, it's a sign you're human. And that is just one of the many reasons I love and care for you!

Love,
me

*Wendy is the friend who told me. She was passing along advice from her friend Cee.

Sunday, December 14, 2014

On holidays, gifts, and cancer

our mantle

So. It's December.

The month of Christmas.

Christmas is a big deal in this house.

It is my goal each year to give my family the perfect Christmas.

Several years ago, a perfect Christmas looked a lot different than it does this year.

For a few years I made the pajamas the kids would wear for Christmas morning. I tried to also make everyone at least one handmade gift. I baked dozens and dozens of cookies. Every inch of my house was decorated. We strung popcorn on thread and put it around the tree. Gingerbread houses were made. Crafts were done. Ornaments were made.

All of this equated to me not sleeping much during December. It left me stressed and frazzled and overwhelmed. There were probably enough tears to water our Christmas tree.

It was fun. But it was a lot of work. And at the end of the day, the perfect Christmas, probably wasn't so perfect for those in my family who were dealing with the fall-out of me being tired, stressed, and fretting when things didn't turn out completely perfect.

Sigh.

I'm tired just thinking about it frankly.

It took cancer to realize that maybe it was time to streamline things and focus on the parts I wanted and let go of the ones that were stressing me too much.

White Christmas and knitting
The Christmas of 2011 left me pretty much unable to do, oh, everything. That year my husband, bless him, was in charge of Christmas. I was sick, dealing with an infection for most of the month that wasn't actually diagnosed until December 23 in which I underwent emergency surgery. I had already been in the hospital earlier in the month. I was tired, in pain, and spent a lot of time in bed. I don't think I participated in Christmas hardly at all to be honest.

And I hated it. Except I was too tired to hate it as much as I should have.

2012 was better. Except I still feeling tired, run down, exhausted. I was dealing with the iron issues and bleeding and anemia. I didn't spend most of the month in bed, but I spent my fair share of time napping.

Last year was a lot better. Still exhausted, but able to shop and bake and do things.

It was good.

This year will be good too.  I'm still exhausted, still dealing with some chronic pain, but I'm here and I can be present.

That is a present in itself.

And I've learned to cut back. Because you know what? The couple years where I wasn't able to really do much (not by choice), an amazing thing happened .... the sun still rose, and the kids still had a good Christmas, and so did I (well, provided I divorce the holiday from the medical things going on).

We buy pajamas now. I make almost no gifts - just a couple as I can. I will still bake an obscene amount of cookies - because that is important to me to keep it on the list.

But I'm also spending a fair amount of time hanging out on the couch watching Christmas movies. We've watched White Christmas, Muppets Christmas Carol, Santa Paws 1 and 2, and some other movies. It's been lovely.

We are hosting Christmas Eve and bless my husband, he set-up for a cleaning service to come get the house cleaned. We pretty much never have anyone else come clean, so this is awesome.

I'm doing Christmas cards this year ... which I haven't done in a while. They are pricey and a lot of money. But I got them on-sale, they are postcard cards, and they will double as "we've moved" cards (which I never sent out).

Our gorgeous tree!
This might be the most relaxed about Christmas that I've felt since being a child.

It is lovely.

Because in 20 years I don't want to look back and think about how stressed I was this time of the year, I want to remember being happy, despite anything else going on in our life, whatever that may be.

But don't mistake me. Getting sick may have allowed me to step back and see that there is more to the perfect Christmas than I what I previously thought, but there is not one ounce of me that will ever. And I mean EVER. I will never call cancer a gift.

I know, I can my hear my husband in my head "Never say never. Or always." but no, I can say never here. Cancer was not a gift. That is, as I've said before, not to say some good things came out of that time period - new appreciations, new friends, new relationships, and changing how things were done to make it better. There were good moments, good things, but none of that will ever make me think of cancer as a gift.

I've got a lot of gifts in my life. Mostly a fabulous family and some awesome friends, who are there whether everything I give is handmade, or lovingly picked out from a store. I have good memories with my kids, some beautiful holiday moments. Those are my gifts. And I plan to appreciate them as much as possible this holiday season.

Friday, December 12, 2014

Happy (not) Ugly Sweater Day!

It's here! It's here!

Today is December 12 - it's Make the World Better with a Sweater day and I'm ready.

I finished knitting my sweater at the start of this week (which sounds like I was cutting it close, but I thought for sure I'd be working on until I put it on today, so I'm happy!). And I'm rocking it out today.

Without further ado, I present to you my sweater:


I had so much fun making this sweater and I feel really good about helping out Save the Children. They really are doing some wonderful things right now and I feel good about supporting them!

Sadly, my 12 year old did not finish her scarf. She did start it and is working on it (and has discovered that she LOVES to crochet) but her heart was in the right place, so I told her not to worry!

And I know it might be a bit early, but I may or may not already be thinking about what sweater to make next year!

But now it's your turn! If you would like to help, you can donate $5 to Save the Children simply by texting SWEATER to 20222. Also, feel free to take a selfie in your sweater (ugly or not, holiday or not, made by you or not) and tag yourself with #sweater and #elfie

Don't have a sweater, that's okay! You can download a paper sweater here and still participate!

Have some fun, help a good cause, spread a little holiday cheer - sounds like a good plan to me! Hope you are all having a great Friday!

Sweater details:

Pattern: Soltice Dias de Betty
Yarn: Lion Brand Cotton Ease
Needle: US 5
Slight modifications in regards to increases/decreases because my gauge was larger than the pattern called for. I also knit it down one side to help offset the gauge difference as well
Would I knit it again? Yes, but the should area is a bit small, so I would probably make the back smaller by a few stitches at the top! 








Thursday, December 11, 2014

And he's 9


Today my son, my youngest, the babiest of my babies, turns 9. 

My goodness. 

9 years.

9 years ago he came into this world in what was practically a picture-perfect birth. Including the fact that he was born in the caul (the amniotic sac did not break during labor or birth!). 

It's been an amazing 9 years with him.

Though, we really thought our family might be complete with two girls, the universe knew we needed this little boy in our lives. 

He makes us laugh. He says the cutest things. He still likes to cuddle with me. He holds my hand in public. He loves learning, even though he doesn't like schoolwork. He spends too much time playing video games, but he's good at them. He longs to be independent but still needs us for so much. He has more energy than I could have ever dreamed. He loves to throw things (thankfully now he mostly only throws balls. when it's appropriate. mostly). He can turn anything into a sword. He is curious. He is creative. He makes me smile. He makes me cry. When he is happy, he is the happiest. When he's mad though, he is MAD. He feels so many emotions and they switch in an instant (though, he's mostly happy and mostly content, thankfully!). He wants to learn to cook. He is helpful around the house - though you may have to ask him once or twice or twenty times. He loves Minecraft and Legends of Zelda and Mario. He still wants to play with his sisters. He has a giving spirit and a good heart.

That's not to say things are all perfect over here and we never have our moments, because we do. He's human. I'm human. Sometimes our humanness does not want to get along! But I always know that we'll make up, we'll apologize and that the love never fades. Not for a single second.

I'm so glad we've got this boy in our lives. He, like the girls, enriches my life and makes it better. 

Happy Birthday Mister Man! Welcome to 9!