All the small moments

Things I did this weekend:

• 9 loads of laundry
• 1 trip to the Farmer’s market
• 1 trip to the grocery store
• Put everything back where it belongs, several times
• Dragged out a storage box of old toys because the kids were bored. They were so excited to see their old toys again they forgot about wanting to go to the toy store.
• Got the Halloween costumes ready
• Refilled the birdfeeders
• Watered the garden
• Made two meals from scratch and heated up four others; two meals that the kids actually liked
• Bought 5 new work shirts for Tom, a sweater for me, a dress for Juliana
• Read 3 bedtime stories
• Sliced a pound of grapes in half so no one would choke
• Kissed boo-boos
• Cleaned the junk out of one cabinet
• Tried to keep a good attitude even though the pain from my leg is very difficult
• Took the kids to the library and showed Juliana how to approach a librarian for help with finding a book
• Gave Sam & Juliana each a bath
• Made sure Nick took a shower
• even the dog got a bath
• Read through the measures and filled out my mail-in ballot
• Washed many, many dishes
• Bought two new rose bushes and sweet-talked Tom into planting them
• Cuddled every child, a lot
• Finished my book
• Chased a skunk out of the house, without getting sprayed
• Watched some of my backlog of Tivo-ed shows
• Made happy memories with the kids involving Dairy Queen ice cream

sundaes and lots, but still not enough, napkins

• Paid bills
• Cleaned up several messes that I saw coming but was unable to avert
• Helped with homework
• Drove all over town at least twice
• Sewed up a hole in Nick’s beloved stuffed animal
• Gave my family all the love I could give

This is why I am terrified that someday I might not be here for my family. I do so much, I can’t even think of it all to list it down here. And it’s not enough. I need to be here to take care of them, for as long as they need me. Which is a long time. I’ve worked so hard to give the kids happiness, strength, comfort, guidance and love. I pray every night that I get to stay here to finish this job I’ve started. I’m doing a good job; I just want to see it through.

It's not just the chores - the running around town looking for the right witches broom for Juliana's Halloween costume, or picking up the dry cleaning. Tom could do that. It's the smaller moments, the attention and devotion to each child that they will someday recognize as the love that only a mother can provide. Yes, it's the big picture, the whole tapestry of motherhood that I'd miss, but it's in my prayers I ask for a long life filled with those small moments. In the meantime, well, the meantime is where I live each day, and I'm happy to say that so far, my prayers are being answered.

Wound Care and Far-Reaching Messages of Hope

Ema has a wound care nurse that comes once a week to check on her surgery site on her leg. The nurse is very kind and helpful, making sure we have the supplies we need to tend to the wound as well as educating us on the proper care. We are seeing progress in this area - no details here, but the wound is finally starting to heal! The pain in her leg is still bad though, and we are seeking a convenient physical therapy option.

It's been an amazing year. "Traumatic" is the first word that comes to mind. Being able to share these journal entries with everyone has been such an important part of coping with all of the stress. It's heart-warming to see that this blog not only gets regular visits from our family and friends, but also from people all over the world. Whoever you are in Finland that keeps checking the site - hello!

For all of you fighting the fight of your lives - keep it up. Or as Ema would say, "Keep holding on."

Until next time. . .

Update - Scan results and another trip to the hospital

Great news - the MRI of Ema's leg and lung CT scan both came back clear! Although the leg MRI still shows a lot of activity in the site of the former tumor, there's no evidence of cancer at all. This is an area that we will keep an eye on as we continue to get scans every three to four months. The clear lung CT scan was a huge relief as sarcomas travel to the lungs first, statistically anyway.

Ema and I went to Orange Coast Memorial Medical Center on Thursday to have her wound surgically debrided and the old stitches removed. Yes, she had to go under general anesthesia for this - who wouldn't opt for sleeping through that trauma?!? The wound is closing up towards the top but it still open to the bone towards the bottom. Ouch! Anyway, her surgeon recommended a wet-to-dry dressing change every 24 hours. I'll spare y'all the gory details - suffice to say it's a rather unpleasant and potentially painful way to tend to a wound, but it's necessary to allow oxygen to enter the site so the wound can heal from the inside-out. The wound care specialist will be at our house on Monday to help with this too. We're hoping that once this wound heals better she will be able to walk better. She's still having such a hard time getting around and is very frustrated with it.

Now, with these scan behind us, we don't have any more MRIs or CTs to worry about until after Christmas! Yay! Life is still so challenging but we're not so terrified right now. Which is such a blessing!

Keep Holding On - Ideas and Suggestions from Ema - # 4

*** Be kind and gentle with yourself. This is not the time to berate yourself for anything. This is a hard time. Treat yourself like you would your best friend; forgive yourself your mistakes, encourage yourself to hang in there.

*** If you can’t get in right away to see a doctor or have a procedure, feel free to call them to ask if there have been any cancellations. Ask politely and keep calling everyday. When you are in the middle of all of these doctor appointments and procedures you just want to get it done and get the answers you need. Everyday that you have to wait is torture and weekends are endless while you wait for the offices to open back up on Monday morning. Force yourself to be the considerate but squeaky wheel.

*** Very often people will have trouble knowing what to say to you in response to hearing about your cancer. Sometimes they will blunder and say something that comes out insulting or dismissive. Try to ignore the awkward words and see through to the friend who is struggling to comfort you the best way they can. Not everyone is able to express themselves well but you can tell if their heart is in the right place.

Keep holding on…

~Ema

Keep Holding On - Ideas and Suggestions from Ema - # 3

Here are my recovery ideas and suggestions for this week:

*** Start a journal. Nothing fancy, just a place to describe your
journey. I'm not big on the "Dear Diary" type of journal. Instead I just note down my procedures and how I'm feeling. That way I can look back and see that yes, I actually have made a lot of progress even though it seems that the recovery goes so SLOWLY…. Also, it's a good place to complain, fret and vent so that I don't wear out my support people.

*** While you want to be as well informed about your disease as possible, be very careful about going on the web to research. Do your research when you are feeling strong. It is incredibly easy to get discouraged and terrified reading the data that is out there. Remember that some of the information on the web is outdated. The statistics may not be as positive as you'd like but consider that they aren't able to take into account all of the great things that you are personally bringing to this fight (like your tenacity, optimism, general good health, etc.). You can even ask a friend to go online for you and filter through the data and bring you back the good stuff. Go over this information with your doctor, letting him know that you are being pro-active with your recovery.

*** Friends will ask how they can help. It was hard for me to think of things to ask for. There were so many things I needed help with, but some of the stuff was just too personal. I really needed help with keeping up with the laundry but could never bring myself to ask a friend to come over to do a few loads. I would've loved for someone to step in and take a couple of needle sticks for me or hey, how about sitting in for this round of chemo – I'm getting pretty tired of it –
but nope, doesn't work that way. Finally I figured out some smaller things that helped a lot.

* Bring me a good escapist movie or a book
* Drop off some magazines that they're finished with (I loved magazines during treatment – easy to look at when you're feeling loopy or just tired)
* Provide dinner for our family next Tuesday.
* Pick up a prescription from the pharmacy for me.
* If you're going to the grocery store give me a call - I probably need milk & bread too
* Take my kids to a movie or to play at the park
* Bring me some fresh fruit (and some candy!)

Even though I didn't want to impose on anyone, I realized that by allowing friends to help me, it empowered and comforted them at the same time it truly did help me. You will feel cared for and they will feel good about themselves. Win-win situation.

Keep holding on…

~Ema

Keep Holding On - Ideas and Suggestions from Ema - # 2

*** Start a blog and let all of your friends know about it. That way you can keep everyone updated easily. It is much easier to communicate the latest updates on your health this way than to phone or email everyone separately. Your friends will understand and if they don't, too bad. You do not have to make everyone else happy right now. You have to take care of you.

***Think about getting a portocath (same thing as medi-port) implanted. It has made a huge difference for me. I am a very difficult needle stick. Now I don't dread procedures as much and the chemo experience was much easier for me.

***Things to bring with you if you have to go the hospital:
* Your medical cards, id card, list of medicines you're taking
* A picture of you with your friends and/or family (It's a comfort for you and Ithink it's a helpful reminder to the medical staff that you are a real person and have a lot to live for!)
* Your own pillow. It was reassuring to me to have a bit of my home with me like that.
* Books, magazines, ipod stocked with music and podcasts (don't forget TheUnrealOC!), Gameboy, puzzle book, etc. (Take one of these to each appointment or procedure too. There is so much "hurry up and wait" with this process. If you have something you enjoy to distract you it will make a big difference, and you certainly don't want to rely on the magazine selection in the Doctor's office:)
* Your personal hygiene stuff
* Slippers. The floors at a hospital are not fun for bare feet.
* An eye mask to block out the light if you want to sleep during the day.
* A small bowl filled with little candy bars. Put a sign on it saying "For everyone who is taking such good care of me! Thank you and help yourself!" Everyone likes to be appreciated and again you are reminding them that you are a real person, not just another patient.

More coming next week -

Keep holding on....

Keep Holding On - Ideas and Suggestions from Ema

I've been thinking of what I wish I had when I was first diagnosed with this disease. I felt like I was flailing around, terrified and alone. So I thought I would make a list of my ideas and suggestions for the newly diagnosed. These are things that I read about or - surprise – thought of myself, that have helped me through this journey. I will keep adding to this list and blog them for you every week or so.

Here are some of the things that have helped me…

*** Keep in mind that THIS is probably the MOST terrifying time right now. You've just been handed life-altering news and while you know it's bad you don't know how bad. Most likely the doctors are giving you vague ideas about general scenarios but no one will commit to any big decisions because they just don't know yet. You will need a lot more procedures like MRIs, CT scans, biopsies, etc. to pin down your diagnosis and then to make a plan of attack. Realize that it is easy for your mind to go down the darkest road because you don't know what is truly in front of you. Try to keep off that road as much as you can. Yes, you do need to prepare yourself for some difficult times but you will accomplish nothing by scaring the heck out of yourself.

*** Schedule some worry time into your day. Tell yourself that at 10am (or whatever time you can have a quiet moment) you will sit down and for 20 minutes you will worry about everything that could possibly happen. You can list it out and go over it with your doctor at your next appointment. Sometimes my worrying did bring up some important issues that needed to be addressed. But by limiting myself to this scheduled "worry time" I was forced not to obsess over it, all the time. When I found myself worrying at another time, I made myself shove it to the back of my mind until the next "worry time". The worst time to worry is at bedtime. You are tired and vulnerable then. You need to think about the scary things when you are feeling strong and ready to kick some butt. Jai Pausch said that it helped her just to say "not helpful" to herself when she found herself thinking the bad thoughts late at night. You have control over so few things in this process but fortunately you do have control over the MOST important thing; your own thoughts.

*** Ask your doctor for an anti-anxiety medicine. I had ativan. I didn't take it very often but it was good to know I had it if I was really getting freaked out. This is a very scary time. Don't be afraid of a little help now and then.

*** Start a recovery binder. Get a business card from every doctor and facility you visit and keep them in the binder. Make a log of every scan and procedure; it's easy to get confused after you've had a dozen scans and forget which was done on what part of the body and at what facility. Keep a calendar and copies of your reports in here. This binder is great in a few ways: being organized is empowering in an otherwise chaotic time and there is no one who is more interested in your care than you. You are important to your doctor but you are one of his many patients. You are YOUR only patient. You need to keep on top of your care and this will help you do it. Take this binder with you to your doctor appointments. Not only will you often need to refer to the binder when speaking with your doctor, but your doctor will see that you are serious about keeping organized and this impression may prove important to the overall climate of care you receive.

These are just some ideas and suggestions. Feel free to take 'em or leave 'em. I'll have more next week. I do hope that they help you through these tough times. Remember courage is just holding on a moment longer. Keep holding on....

~Ema