Good Report

We got a good report from my scans yesterday.  The tumors had shrunk more, and my doctor is just having me do one more cycle of chemo here!  I then will go on a hormonal for as long as it keeps things under control.  So one more chemo treatment to go!  I am nervously optimistic.  The chemo, as hard as it is, is like a safe-guard in some ways.  I am hopeful that the hormonal can work just as well on the cancer as chemo.  

So here we go onto a new thing. . .   It will take me a while to recover from chemo, but I am looking forward to having some new-found strength and energy.  

Upcoming Scanorama

Have you seen these posters?   Oh man, I haven't laughed out loud at my computer in ages until I saw these on another blog.  Talk about hilarious humor.  I guess I am like the Pioneer Woman, because I totally get this humor.  If you want to see more, go to Despair.com--you gotta love that name.  I really liked Challenges.  Funny stuff.  I am like Ree, if I had an office job, these posters would be all over it, tacky like, hanging on every inch of the space.  

In scan news:  Scans are scheduled for Tuesday the 25th.  We won't know results until the following Wednesday, but I will be sure to post them when we get them.  

Treatment has been okay.  I have some increasing queasiness with each recent treatment.  The meds I have for the nausea work, but they just make me more sleepy than I already am.  The ones that cost a bundle a pill and don't make you sleepy aren't really working, but the cheap drugs do.  Go figure.  This past treatment was rough as far as fatigue and weakness go.  I got the Vivix product and started it the day before, so it had not kicked in yet.  For 2 - 3 days after, I felt like a zombie.  I couldn't hardly do anything but sleep.  I got up on Friday to do a few things around the house for like a half an hour, but it totally wiped me out.  I just felt YUCK.  The good news is (as if there has to be some) by Sunday I felt fine.  I totally was moving and grooving all day without even a nap.  I am not sure if it was the very small coffee I had that morning or if the Vivix was kicking in.  I felt great Monday too.  The bad new is I couldn't fall asleep Sunday or Monday night.  You would think that after all the activity, I would be wiped.  But not so.  I even got up and took a warm bath to relax, and that didn't work.  I took drugs, counted M&M's, SweetTarts, Sprees (I have no clue why they are all candy related, but they are easy to count), and sheep.  Maybe I am getting too much subconscious sugar!  Ha, ha!  So now today, I was tired, and I slept while Emma took a nap.  I should have just stuck it out and not slept, because now I am awake.  I may try to head to bed soon and at least attempt it, but I have my steroids in me tonight.  Gotta love the joys of cancer treatment:  Tired, Can't sleep, Queasy, Tired, Can't sleep.  Geez, can we get a break???  I know, I'm funny right.  As my Aunt Kim said, and I quote her loosely, we're ready to be rid of this chemo lifestyle.  I think it is time to find a new lifestyle.  What should I do, go start a llama farm?  It would be better, and my family can all come scoop llama poop.  Okay, I crack myself up.  

In fun news, I re-did Emma Mei's room with all my new-found energy.  It is so bright and colorful and fun.  I should post pics on our other blog.  I found the comforter cover long before she came home, and over the past couple of years, I have been "collecting" things to go with it.  So in two days, a little spray painting, and craftiness, her room was transformed from a sweet, adorable nursery to a bright fun room that really matches her personality.  I was a little sad to take down her old name I had made though.  There was something symbolic about it.  I probably will never get rid of it, and find some secret place to hang it where I can peek at it once in a while.  I guess I should have posted this over at the family blog, but it is related to new-found energy while having treatment.  By the way, her new name on the wall looks sweet as I took pictures from her comforter and printed it into paper for decoupaging.  Josh says it is his favorite name that I have done so far, so kudos to me.   Although Katelyn's room is done and gorgeous in my humble opinion, she had plenty of jealousy over my doing Emma's room.  We had a little talk about life and fairness, and blah, blah, blah.  So, if you ever come over and see Katelyn's room, feel free to gush about how adorable it is.  

So my next project, I am praying, praying, praying (no pressure here, honey) for a certain (big) room in my house to be painted a certain beautiful shade of Benjamin Moore Pottery Barn color.  I will sell all my furniture to have it painted, just to sit in it on the floor and bask.  It is all I want for Christmas, and I must be desperate if I am actually posting it on here.  Well, it isn't all I want for Christmas, I want a couple of other things (and of course they aren't cheap), but the painting would sure take the cake.  Anyone like good at painting out there?????? Hello, hello is this thing on????   I am good at it, but I really don't have the strength it takes to tackle it.   I would be all over it if I did.  

Well, Jack-jack is here this week with lots of yummy food for us to gobble up.  It is nice to have her here to take care of us.  So, I am signing off with a yummy recipe for Mystic Chai Tea and a story about it.  Some friends from church had the pastors all over for dinner, and she served us this yummy tea mix she had made.  So today, I found the recipe online and I wanted to run out and get the ingredients.  

Here is the recipe typed out as I found it: 

RE: Mystic Chai Tea Mix Recipe

Post By Susan (Guest Post) (01/07/2005)

Instant Chai Tea Mix

1 cup nonfat dry milk powder

1 cup powdered non-dairy creamer

1 cup French vanilla flavored

powdered non-dairy creamer

2 1/2 cups white sugar

1 1/2 cups unsweetened instant tea

2 teaspoons ground ginger

2 teaspoons ground cinnamon

1 teaspoon ground cloves

1 teaspoon ground cardamom

Directions

1 In a large bowl, combine milk powder, non-dairy creamer, vanilla flavored creamer, sugar and instant tea. Stir in ginger, cinnamon, cloves and cardamom. In a blender or food processor, blend 1 cup at a time, until mixture is the consistency of fine powder.

2 To serve: Stir 2 heaping tablespoons Chai tea mixture into a mug of hot water.

Note:

You may choose to omit the French vanilla creamer, and use 2 teaspoons vanilla extract instead. To do so, mix the vanilla into the sugar, let it dry, then break the sugar into small lumps. Follow the same procedure as above.

You can spice it up even further by adding 1 teaspoon nutmeg and allspice, and 1/4 teaspoon white pepper. Makes 36 servings. 

Warning, the rest of this plays like a dumb blonde joke, except it is the dumb chemo-brain joke.  Does anybody want to guess at what I did?  I go to the store to gather all the ingredients.  I have everything I needed except one thing.  By the way the cardamom is expensive, but this recipe makes a lot of tea, and the taste is worth it.  (You can buy it whole and grind it in your coffee grinder to get it cheaper.)  What one thing did I spend at least 15 minutes looking for?  Yep, the first "ingredient" on my list, instant chai tea mix.  DUH, that is what I am making, not an ingredient.  I hope you will all admit that it looks kind of deceiving, but still I should have figured it out by there not being an amount of it to put in the recipe.  I got home and felt like a goofball when it finally occurred to me that wasn't one of the ingredients.  Ughh, so I am going to try again tomorrow perhaps on the way home from chemo.  I did end up buying some kind of chai latte mix, but I knew that wasn't the right thing, as it had other stuff in it.  I just knew I was looking for plain chai tea mix.  I was thinking about taking tea bags and seeing if I needed to rip open a bunch.  I am so glad I figured it out.  I thought our store was just not carrying everything I needed.   So glad you can all enjoy my dumb moment.  Let me know if you try the recipe.  It truly is good stuff to keep on hand.   

Thirty-Five and Counting

Yes, I had a birthday, and I am now officially 29.  Oh, did I say 35?  My mistake!  Ha, ha!  It was a wonderful day.  I was with my family, and Mark was even there, and Kristin, and Rachel, etc., etc.  I couldn't ask for a more perfect day.    We were in Indy for the weekend to celebrate my and our E's birthday.  Their downtown rocks.  We ate at Weber Grill one night and P.F. Changs the next.  The guy at PF Changs was just a little sloooooooowwwwww, but it was all good.  Our food was good, and so was the little desert I got because it was my birthday.  Next time I go to Weber Grill, I am totally getting the kid's meal.  It is amazing what they get, and there is ice cream in a waffle cone for their desert!  I woke up late the next day on my actual b-day, and Rach came in to get me up.  I got up and had the best birthday shower ever with a double-headed shower.  Super nice.  Then Josh came to take my Starbucks order as there was one in the lobby.  Yep, like I said, it was a good day.  

To top it off, I got to shop at an outlet mall that day with birthday money.  Found a couple of cool things for meself.  Sorry the pirate speak sneaks in there sometimes.  Then my dear brother (not really in-law) gave me a beautiful painting that he had bought for himself in China.  He gave it to me because it reminded him of us adopting Emma Mei.  It is beautiful, and it is truly one of the sweetest and most beautiful gifts I have ever received.   Can we just say, it was a day filled with emotion--good ones though!   I am going to miss him this year as he will be traveling abroad.  

My jaw seems to be improved.  It still has some flare-ups of pain, but it is definitely a whole lot better than it was.  At least I am not having to pop the pain relievers every four hours.  What I don't know is if I will have to stay on the antibiotics for a whole lot longer or what the oral surgeon will do.  I go back to see him next week, so we'll see what he says.  I am just happy to not be in pain all the time.  

I still have plenty of fatigue.  The cool product that I am waiting on is on backorder.   Apparently it is so popular, that they did not expect the kind of demand that it has had.  It is a Shaklee product.  If you know anything about Shaklee, they don't do anything unless it is first class/top quality.   The product is called Vivix.  It is an anti-aging product that works at a cellular level.  I cannot wait to get my supply.  It helped me that much.  I could definitely use the help with my energy levels right now.  Otherwise, I have to depend on good ole' caffeine for the extra boost.   Not too healthy, but it works.  Vivix actually has proven anti-tumor activity with the resveratrol that is in it.  It has the benefits of drinking about 30 glasses of red wine without the alcohol in one serving.   It truly is an amazing scientific breakthrough.

 

I have been taking lots of pictures for others and myself.  I have a project I need to work on, but it is probably going to take a day of picture taking by myself.  I don't know when that is going to be able to happen.  It will be cool if I can accomplish it.  I enjoy my photography so much.  It gives me a place that I can go to that is actually mine.  Something that I helped to create and capture a moment in time.  Those moments go all too fast, and some of them just need to be preserved.  

So raise your glass to many more birthdays and celebrations for all of us!  We will take every one that we can get.  They are all special!  

The What Up

My jaw hurts. It turns out that the "cold sore" that I have been fighting since May is actually exposed bone. I am hoping and praying we can get the right stuff to help it heal, but it is a crap shoot. It is a nasty, nasty rare side effect of one of the bone strengthener drugs I have been on. The doctor has taken me off of it for now as I do not have bone involvement at this time, but it has a 10-year half life. The only course of action is to try antibiotics and a special mouth wash. Depressing. I am off to see the oral surgeon on Friday as they are the only ones that seem to have some knowledge about this kind of thing. I could hardly get an appointment with her until I told the lady I had exposed bone. Then it is like "OH! Let me get you an appointment.". Even my onc. had never seen this before, and she didn't think it was the osteonecrosis thing. I have news for her. I am almost positive that is what I have. Yes, I google my stuff.

I did get a break of sorts this past ten days. I tried this new product that a friend sent me a 10 day trial of. It really boosted my energy levels and I did so much better with sleeping at night. If I could only afford it. It must be like an elixir of the gods--Ha, ha! It really is a wonderful product and the ingredients have proven anti-tumor activity. I found myself unable to sleep the other night, and I just realized I had taken my last dose the night before. Ah, it was nice while it lasted. Maybe we can sneak it in the budget, we'll see. If you want to know what this great product is, just e-mail me. I'll tell ya all about it.

Chemo today. Can't sleep at 5 am. Steroids. At least they make my mouth not hurt. One good thing about chemo, it eases the pain for a few days. Maybe I am just looking forward to the chocolate chip cookies a friend said she would bring me at chemo today! Can't wait, been craving me some good cookies.

Ah, blah, blah, blah. Life really has been pretty good now that Emma is healed up. I felt excellent yesterday, and really did some stuff. I am sore now from all the extra activity, but a good sore! I basically forced myself to get up and move without overdoing it. I have been sewing Katelyn's halloween costume. If you don't look at the zipper, it looks pretty darn good. Just a few mistakes here and there. BUT, it is just a costume, right? I am into sewing lately, so my new motto is to not make anything with a zipper. I think I can do that. I want to improve my mad skillz. Ha! We'll see how the next little project goes. I am also trying to go hand made on a lot of Christmas gifts this year. So we'll be gettin' our crafty side on. I have work to do folks. Maybe those steroids will come in handy--just kidding. Gotta love the druggie jokes from a cancer girl who has a load of them in her cabinet. Whaddaya need? I probably have it. Blood pressure? Pain? Anxiety?

I guess I am just feeling goofy this morning. Take it for what it is. That is the what up.

End of Inscanity

So, I actually was able to end the inscanity on Friday.  I hate to kick the good looking Johnny down the page, but I thought you all might like to know about my scans too.  I realized Thursday night that I didn't have a doctor appointment until the 10th, which is nice, but it doesn't get me my results.  I ended up just calling the nurse, and she called right back and gave me my results.  It was so easy.  I liked that sooo much better.  

The results were good.  All the tumors were either stable, less conspicuous, and possibly smaller.  My tumor markers are down from 86 in June to 53 this month.  Normal is below 35 or so.  We are slowly making progress here in the right direction.  I haven't talked to the doc, but I am assuming we will continue the course of treatment until we get those normal results.  It does help to know we are continuing to get somewhere.

The last three weeks were killers though.  After the thrush, hospital visit, anemia, and general lack of energy, I was really feeling like my energy level was never going to recover, and that I was destined to be attached to the couch.  We went to the zoo last Monday, and I just kind of went from bench to bench.  It was really depressing.  I tried to enjoy it, but I was just so exhausted.  Thankfully by Tuesday, I felt a bit better, and my energy levels have continued to improve.  I was actually able to get Katelyn's and Emma's closet ready for school and clean it out on Saturday.  I am giving myself Neupogen shots for the seven days after the 2nd treatment.  It isn't too bad, and I think that the shots are what are helping me have energy again.  My body isn't having to fight as hard to keep the white counts up.  It does give you some bone pain, but nothing that Ibuprofen can't improve.  

That's the news from Lake Wobegone. . .

Yo Ho, me hearties, Yo Ho

Me and me mateys are thrashin' about in the sea of Thrush, where a great, giant wave wash over me and sent me to me cabin for many days.  After thrashing about in me bed while me mateys tried to keep control of de ship, I be losin' count of de days.  The scallywag thrush pushes me into de burning fe'ers on a Saturday and forces me and me mateys to land on de island of Hos Pee Tal.   De Medicine Man there is a decent mate, but no one likes to see 'em.  De Man has some nice lasses to help me get de grubs and potions me needed to sail the seas again.  Medicine Man says me white counts be low, and then he says me red counts be low.  De Man gets me a couple pints of blood.  Me wishes it were some grog instead, but alas, it did make me feel better.  I was pining to sail de seas, so by a Tuesday dey lets me go back with me mateys.  I still be weak but gettin' me sea legs back and I'm back to sailing for de booty again.  That blasted X is just a gettin' closer.  Yo-Ho-Ho!

To interpret, the thrush wasn't getting better after a week on meds.  I started running a fever on Saturday, so Josh and I had a hot date in the ER.  They saw my white counts were low, so they kept me, and started me on antibiotics.  By Monday, my reds were down and I ended up needing 2 units of blood.  I was sooo sleepy before they gave me the blood from the anemia.  The Lacks Cancer Center at St. Mary's has a great inpatient unit.  They have their own kitchen, and you can order anything from their menu that you want at any time from 7 am to 7 pm.  So if you want 6 meals, you can get them.  My mouth finally started improving by Monday, and my counts were up enough that I could go home on Tuesday.  I didn't have chemo this week.  It's a good thing as I am still recovering both physically and emotionally.  Something about the hospital just knocks it out of you.  Well, that is my saga.  

Yo Ho, me hearties! 

PS:  The pirate story was one that I made up to amuse myself in the hospital, so I posted it to prove to my dear husband that I really am crazy!  Ha, ha!  

Thrush and other updates

I am currently battling a very bad case of thrush this week, which is unfortunately my week off of chemo.  I've had it before last winter, but it wasn't this bad.  It hurts to swallow, talk, or anything.  My entire mouth and throat just hurt.   I can't taste anything, and I just generally feel crappy.  The meds are just taking longer to kick in, because I have a bad case of it.  Ughh.   Any prayers for the meds to start working are appreciated!  

My blood pressure has been high lately because of the Avastin, so I am going to be starting on blood pressure medicine.  I just have to pick it up at the pharmacy, but I haven't really felt like getting out these last couple of days.  

My next scans are scheduled for Aug. 27th to see how the new combo (Taxol/Avastin/Cisplatin) is doing.  It should be nice getting them done at the new cancer center, so I get to look at the cool mural thing on the ceiling!  Other than the latest thrush thing, I have been feeling pretty good once I sleep for the first couple of days after chemo.   I have been dealing with a bit of yucky feeling in my stomach the days/weekend after, but I think I finally found an anti-emetic that works.   The fatigue will tend to build up, the doc says, but as long as we are getting rid of Cilgamore, I am happy!  

A Long Day in the New Digs

Our new "cubbies" for spa day with our own LCD tv.  Suh-weet!  

 the healing garden right outside the infusion area

I am so getting my CT scans done here next time, just so I can stare at that cool thing in the ceiling!

Wednesday was the first day to add in the new drug to replace the one that I had a reaction to: Cisplatin.  My onc. is giving it with a little different protocol than normal in order to de-sensitize my body to the drug.  The drawback is that it takes ALL day to administer it as they dilute it with a lot of fluid.  The computers were down on my first visit in the new cancer center, so that was a little chaotic for everyone.  Hopefully the internet will work better too.  I couldn't get to blogger to blog anything, and it has taken me until now to update things.    All that fancy shmancy stuff, and I just want to get on blogger!   

So far I have just been tired this week, but no nausea or anything, so that's good.   The doctor wants to keep on this type of combo that I am doing as I have had such good results with it so far.  Here's to hoping and praying we keep the good results coming.  

Hitting the Limits

It seems my day was not to be complete without some excitement.  We started my Carboplatin today, and I reached the limit of how much of it I can have.  I was on the phone with Josh and I started feeling itchy in my throat and eyes and everywhere.  I said goodbye to him and called for Carol, my nurse.  She said I was having the allergic reaction that she always tells me to watch for, because the more you get of Carbo, the more chance you can react.  I immediately had 3 nurses around me, one give me oxygen, one giving me a shot in my iv to counteract the reaction and some benadryl, and one giving my saline.  I started getting a rash on my arms and my ears and face turned red.  It took two doses of the drugs before I started really improving.  It was just crazy!   It is very difficult to be so itchy when you are surrounded by other people when all you want to do is stand up and scratch all over, but it finally started subsiding and eventually went completely away after we left the cancer center.  

Everyone next to me kept asking if I was okay.  I guess I provided them with some good entertainment!  A sweet older African American friend named Willie, was leaving at the same time I was and announced that she and I were going to go hit the bar, get some drinks, and go dancing.  Then she proceeded to do a little dance right there for everyone.  Ha, ha!  Good times.  Willie is moving out of state soon, and I am going to miss her.  I wonder how old she really is.  I am guessing she would be old enough to be my grandma.

My doctor will put me on another platinum chemo, probably Cisplatin, for the continuation of my treatment.  As many of my other mets friends will tell you, having metastatic BC is like running a marathon, not a sprint.  That is why we will stay on a drug (keep running) as long as it is working and we tolerate it--especially if we are gaining ground.  If we fall and scrape our knee, we get up and keep going.  Today's good news gave me that boost I needed to keep running.  

Reeesultz. . .

To borrow an idea from my friend, Elizabeth's husband.

The word on the street is:

Shrinkage...

Get Smaller. 

Reduce in size.

Contract.

Shrivel.

Disappear.

Telescope.

Minimize.

Lesson.

Curtail.

Decrease.

Diminish.

Reduce.

Cut.

Decline.

Dwindle.

Drop off.

Go Bye Bye!

DIE CILGAMORE DIE!

In any language:

Shrink.

Encogimiento.

Rétrécir.

Krimp.

Psychiater.

Συρρικνωθείτε.

Strizzacervelli.

Psiquiatra.

Сокращение.

收缩.  (I had to add the Chinese characters of course!)

The official word is less prominent and smaller.  Tumor marker blood test is down too!  Yippee!!!  Staying on course with the chemo at the very least for another month or two.  Thank you for the encouraging cards and e-mails.  I especially liked Sara's:  You know it has been a good day when you didn't hit or bite anyone!  (a quote from a young boy).   Ha, ha!  Isn't that great?   I was amazingly at peace all week.  I don't know how much of that was from pure busyness (yard sale, piano recital, end of school stuff, open houses, etc., etc. . .), but I know all the prayers and happy thoughts had the biggest part in it all!!  

A Quick Post Pre-Benadryl

At the lake in the UP at Winell's cabin: July 2006

I get sleepy when they give me the Benadryl, so since I am already a bit tired, I thought I should get a quick writing in.  

My platelets were low this morning, so I am getting a little less of the Carboplatin today.  I was tired yesterday, so Emma and I had "pajama day".  We were originally going to work on pricing yard sale stuff yesterday, so I am glad that it didn't work out and I could stay home.  I told Josh this morning that I thought something was low in the red count category as I was so tired and I was looking pretty pale yesterday and today.  

I cut back on my steroids last week per docs orders.  I took only 5 instead of 10.  I did not have any reaction, so this week, I am down to 3!  I am just hoping that I don't have any reactions today while I get my chemo.  It is just a touch un-nerving.  The next couple hours will tell.   It is so much better already having cut out half of them.  I have less problems with sleeping and I don't get as puffy and swollen afterwards.  Yeah for that!  

Here is a photography related quote from Vincent Versace as a guest blogger on Scott Kelby's Photoshop Insider blog.  It was an inspirtational read for me this morning, and I felt that it could apply to life as well as photography.  The post is about how to let your photos "take" you instead of you "taking" them.  It is about how sometimes, the simplest, most mundane photos are the ones that capture a moment in time.  The first paragraph has doubly the meaning for me as that is one of the reasons I do love photography as a hobby.  

We did not decide on photography as a hobby or a vocation because we needed a place to spend money so we have enough equipment to start a camera store. We came to photography because the world moves us in such a way that we want to photograph what we see so others can be moved the way we were, at least that is why I do it.

So what I invite you to consider is this, next time you go out to shoot, slow down to the speed of life instead of trying to see the world according to a predefined “check list for photographic success” which does not allow for random acts of life. What happens when we confine ourselves to someone else’s definition of correctness is we come up with images that are the same and we take them over and over again.

It is in absolutely spontaneity that we find absolute truth. To be taken by a photograph is to tell the truth of the moment. It is through spontaneity that we find the ability to take extraordinary photographs of simple things. It is easy to take a mundane photograph of an extraordinary thing, the extraordinary thing does all the heavy lifting. But to have the ability to take extraordinary photographs of the everyday…. Not only will you have been taken when you do this, but you will have created an image that will take others there with you. The architect, Ludwig Mies van der Rohe, expressed this concept the best, “An interesting plainness is the most difficult precious thing to achieve.” Think about all the great photographs that moved you, that took you, were they not of the simplest of things?

So again, I invite you to slow down to the speed of life, make visual poems that take the viewer the way you were taken. To visually speak poetically and to write with light using the language of heightened emotion. But most importantly be sure to make it so you always allow yourself the buzz of being taken by your photographs.

In other words, slow down and enjoy life.  The simple things/moments can be the best ones.  Okay, enough of my thoughts for the morning.  

Off to take a nap!  

Another Week Off

My white counts were too low this week for chemo, so I have the week off.  I feel just kind of eh about it.  On one hand it is nice for a break, but on the other, it is less fighting power.  Oh well, it is what it is.  I will start getting Neulasta shots after my second treatment from now on to keep my counts from getting too low for treatment.   Hopefully those will keep things on track.  The only bad thing is that I will have to go back into the doctor for the shot the day after the second chemo.  

And as far as scans--slight change, they are now scheduled for May 28th.  

Energy levels have been up and down.  I got a little yard work done yesterday, but had to lay low today.  We are planning a big day tomorrow at the Tulip Time festival in Holland, so that should be fun!  Pictures will eventually show up at Fisher Journeys!  

Scan Scheduled

Scanorama is set for May 30th.  I will probably will not  think about it until the week before, but I just wanted to give a heads up to everyone else.  I hate scan time as it wreaks havoc on you emotionally, but it is a necessary part of the process.  I just get soo nervous the week before and after waiting on the results.  Last time, my doc thought my heart was possibly being affected from the chemos, but it was just my nerves making my pulse race and my blood pressure high.  Nice.  Maybe they should give me some valium to take the night before or something for my nerves.  

Week Off & Spring Cleaning

I had a burst of energy this past weekend.  I am not really sure where it came from (unless it was from Ben's special espresso on Saturday), but it was nice.  It all started with cleaning out the junky closet in Emma's room.  Her clothes are all in Katelyn's room, so Emma's closet was a catch-all.  I guess I got carried away, because then I cleaned out my clothes and rearranged our bedroom.  My friend and I are having a collaborative yard sale at her home next month, so I keep sending loads with Josh to their garage.  I keep having this wish that it would have the floor just drop out and take all of our "stuff" and spit out a few hundred dollars like an atm machine.  Wouldn't that be nice, Rhonda?  It is just sooo nice to clean out stuff, and simplify.  I have been drawn to take on a more minimalist lifestyle.  Less is better.  I am not talking extremes, but just about keeping only what you love and really use. For example, the girls don't need the entire town of little play houses, one or two are just fine.  It is really a freeing way to think.  Now if I could only make myself think that way about cute girl's clothing!  Ha, ha!  I felt so energized and liberated after all of that cleaning.  It was literally like an adrenaline rush.  I didn't feel the fatigue from the chemo at all.

I did have a long nap on Sunday, and  I was able to sleep in today as Josh is home on Mondays. If I get my sleep I am usually okay, but I think my energy burst depleted so I haven't accomplished as much as I wanted.  After digging around in the garage attic this afternoon, I was pooped.  Since this is my normal week off from chemo, I am going to try to only do one area/closet a day until I am done.  Unless of course, I get another sudden burst of energy from the sky then I will do more!    

New Schedule

I just finished one round on a new schedule, and I am starting the second round today.  My doc changed me over to 2 weeks on with one week off to keep my blood counts from dropping too low.  She was considering changing it anyways, and when I told her we were going to be out of town the 3rd week, she decided to do it.  

I feel better/worse on different days now, so I am having to feel it out.  I was really tired the last couple of days where before I would start to perk up the two days before my next chemo.  When I saw the doc today, she did say my counts were low, but not too low for chemo.  She also said that my tumor markers are coming down each month, so that is good news!  We are planning for scans in May sometime.  I don't have a date yet, but I'll keep you posted.  

Chemo Day Mosaic

Jessica

I wanted to ask for prayers for my friend Jessica. I have a link to her blog on the side. We met at the conference in Florida when she sat with me at the first workshop. She was in San Diego visiting family when she fell and broke her hip. She was using a cane at the conference. This past week, her husband flew from Texas to help her get home, but she suddenly lost feeling in her legs. She had to have surgery to remove some broken vertebrae and the tumors. There was a huge one wrapped around her spine. We are praising God that she did come through the surgery okay, and was able to move both of her feet!! She is also starting to get some good tingles in her legs. She is having a second surgery today at 4 PM PST to insert some metal supports for her spine before she can come home to Texas. Please pray for Jess and her family as I know this has been a super hard time for her. They have 3 girls at home. She is such a sweet person and I hate to see her struggling so much right now. I hope I got all the details right. Her husband is posting pretty regularly to her blog to keep us updated.

Back in the Saddle

Gearing up for a doctor's visit and a big chemo-cocktail day tomorrow-err actually today. I am up using up my last of my week of feeling good. I am also hopped up on steroids for the evening in preparation for tomorrow, so that encourages this natural night-owl.

It was great to have a break. I really started to feel good by this past Thursday. Katelyn was home sick for two days last week, but thankfully I haven't come down with her illness so far. I may be speaking too soon, but my counts should be back up now. It was actually really, really nice to hang out with both girls on Wednesday and Thursday. Wednesday, Katelyn was in a nostalgic mood, so she played all of her home videos that we have on tape. That literally took ALL day. It was so funny to see Emma watching Katelyn as a baby and trying to imitate her. Katelyn gets sad when she watches the movies of her birth because she misses Sunshine. We just spent lots of time cuddling and talking about how it makes her feel. It also made me sad that we don't have those kind of baby videos of Emma. I need to get all of her tapes copied over, so that she can watch the ones that we have so far.

On Thursday, Katelyn was feeling better, but still in that 24 hour contagious period for a fever. She and Emma played together all morning and some of the afternoon, pushing their baby strollers around and generally getting along really well. The sun was shining in the windows, and we just had a great day with the three of us. I am so glad that we were able to have that break from the routine of school and chemo. It was so refreshing and just what we needed.

I am preparing myself mentally for possibly not feeling good again now. Gotta gear up to get back in the saddle, but all in all, breaks from chemo are not necessarily a bad thing.

A Video from YSC Conference

Just linking up to a cool video from the conference.

A Candle for Cathy

Some of us in the YSC (Young Survival Coalition) community are lighting a candle tonight for one of the girls on our board. We call her "Mama Cathy", because of her way of encouraging and helping others. Cathy always has a kindness about her as she offers words of wisdom. She was all set to come to the conference, and we were all so excited to meet her. Unfortunately, she had progression and was unable to come. Cathy is in the final stages of the fight at MD Anderson in Houston, and we are all thinking of her and praying for her. She has been pretty comfortable thus far, and she is surrounded by her husband, her 3-year old little boy, and many family and friends. I am also lighting this candle for many of the others on our board who are struggling right now.

Duh!

I just realized that that link that I sent out for my blog in my e-mail had www in front of it when it totally doesn't have to. It must be the OCD in me, but that just bugs me. So, the link works, but it is a lot easier to just say: amylfisher.blogspot.com than to add the www on there.

Just had to share my Duh! moment.

Oh, What a Beautiful Morning. . .

Cross-posting from Fisher Journey's!

Is that legal to do the same post for 2 blogs? Ha, ha!

Well, I guess it is, 'cause I just did it.

A Response

I got this comment from Steve (His Servant) on my More Thoughts about the Conference post, and it made me think about how others respond to what I/we are going through. So I thought I would use it (with his permission) as a springboard to talk a little about it.

I often, (as I think many of us do), find it hard to express sorrow and sympathy to you because I fear you can discredit everything I might say. I have nothing to compare to the difficulties you have had in your life. I have not walked in your shoes. I cannot begin to understand the difficulties you face everyday. You have a great appreciation for every God given moment. It is my prayer that God will continue to give you good health and that we might know how to better express ourselves to you.

My first thought is that I am extremely humbled that others feel so much sorrow and sympathy for me and our family. It means so much to know that we are so loved and cared about by so many. It is kind of a hard pill to swallow though, because it is one thing when my illness just effects me, but it doesn't. It also effects many others that are in my life, and that is one of the things I hate. It just truly sucks. I can handle it, if it was just me I was worrying about, know what I mean?

My second thought is, I would truly accept any expressions of sorrow and sympathy from anyone--and I wouldn't discredit you, I promise!! The speaker at the conference had some good points on grief. The reason her workshop really wasn't helpful to me is because I have learned through my life experiences to grieve my losses as they come. In turn, those experiences have helped me to be able to do that with my current situation as well. That is the beauty of it. I am able to deal mentally with my situation for the most part, because of the hard experiences I have had. I had some issues with some of the speaker's other statements and quotes she used such as the one I previously mentioned to the audience she was speaking to, but I think she did make a good point on grieving your losses as you go. I know that was helpful to some of the women who had never really thought about that. They always associated grief with a death of some kind and not with all the little losses in your life. I also know that the prayers of others and the support of family and friends has also help us get through the tough times. I have my bad days, of course, where I just feel down in the dumps and wonder "Why me?", but I have found that I can't stay there for very long. Call it short-term memory loss if you will. I am definitely not in denial, I just try to live in the moment. So if I am sick, I live in that moment. If I am feeling good, I am living in that moment. If I am sad I am living in that moment. Heh, nothing like being moment to moment!

My hope is that by being able to keep you all informed through this blog and you all being able to respond and comment on the blog, that when we do meet/talk in day-to-day life, our conversations do not have to center around cancer and all that jazz. I like being able to talk to people about the normal things like how their life, kids, job, is going. I like talking about my family, my kids, photography, shopping, and just about anything. If my health issues come up, that is fine too, but I don't like it when it the first and only thing someone asks me and then there is just that awkward silence. I am still here, living large, and trying to make the best of every day. Defining a new "normal" for our family if you will.

I have found that even though we have been through a lot, that there is always someone, somewhere who has it worse than me. Every day truly is a gift, and I strive to live by that. I could be in a lot of pain and needing pain medication all the time as some women with my disease are. I could be paralyzed from the cancer eating away at my spine as one woman on our YSC board is. I could be walking with a cane, or have heart failure from chemo. I could live in a country where there is no insurance or even treatments for this disease. That doesn't mean this is easy. Far from it. It is hard to not know what your future holds, and be much more aware that we all have an expiration date. It is hard to wait for scan results and experience all the fear and bad thoughts about the worst possible scenarios. It is hard to come home from chemo and feel like doing nothing but sleep. But as I have told a friend. I would take the cancer away if I could, but I wouldn't take away the perspective it has given me on life. I am much more grateful for the little moments nowadays. Those are the ones that make life good. I have seen a quote somewhere that says something to the effect of: We are all dying. Cancer patients are just more aware of it. So yes, here comes the stupid bus analogy again. Any of us could step out in the road and be hit by a bus and be dead tomorrow. Living with stage IV cancer is like standing on the yellow line and waiting for the bus to hit you. Okay, enough with my stupid morbid jokes. I know not all of you can handle that stuff! Ha, ha! I am not going to go mountain climbing and all the rest like in the country song, but I will try to enjoy every day I have with my family and friends (although, it would be nice to do some world travelling sometime). Really, every one of us should do that. None of us know our expiration date.

Please just don't put us on a pedestal. We are definitely human. In fact, if you really knew us well, you might be super surprised at just how human we are. Just because you don't see that, doesn't mean it isn't so. :-)

Thank you for the prayers and thoughts. They truly help to get us through! We couldn't do this without them and all the help we receive from everyone.

A Week Off--A Welcome Break

No chemo (Taxol, Carboplatin) today. My blood counts were too low. I get the next week off too to let my white blood cell counts recover. I was feeling really super fatigued this past Saturday and Sunday, so I must have been pretty low this weekend, because I was already feeling better Monday and Tuesday. So now I am neutropenic (where you have to be super careful for infection) until the counts get back up. I am glad I am getting a break as it is better than ending up in the hospital. Although, at one point on Sunday, I was thinking that a nice quiet private room at St. Mary's with a lcd widescreen tv, unlimited internet, and all the food I want might not be so bad. Their cancer center rocks. I don't really want to go to the hospital, but I did have the thought cross my mind.

I still am getting Avastin today. Avastin is a new drug that was still on trial when I started it. It has since been approved for use in breast cancer treatment. It is not a chemotherapy. It is a drug that targets the blood vessels of the tumor. It has had good success in colon cancer patients and I believe lung cancer patients. A lot of the ladies I talk to that are on Avastin have had some good results so far. The only side effects that it has are what we girls call the Avastin snots, yucky bloody snot, really dry nose in the mornings, slower wound healing, and sometimes bloody noses. So far I haven't had any really true bloody noses. I can deal with the snot.

I was planning to make a mosaic picture board of my day at chemo, but it will have to wait until the 26th so that I can get some more pictures as today's visit was too short. Look for it to come. I hope I can get some interesting shots.

This break comes as a welcome reprieve even if only for a couple of weeks. It can be kind of daunting to not have an ending date for chemo. I know I at least have 3 more months and probably more than that. As long as I can get some breaks, it really helps me mentally. I also am going to ask Dr. Yost on the 26th what her goals are to reach before thinking about switching me to a hormonal. That may give us some clue as to what we are looking for as far as blood work and scans.

More thoughts on the conference

I've done some more thinking about the conference workshops, so I thought I would blab here. I may have had too high of expectations for them for the first thing.

The first workshop was supposed to be "Living Well with Advanced Breast Cancer". Well, in my mind that was going to be practical advice, maybe organizational tips, things to do to help in your day-to-day life, etc. Well, we got in there, and the "title" had changed. Same speaker, but it was a different topic. A lot of women were wondering if they were in the right room. The title was "Living Well: Coping with Cancer and Healing through Grief". I know that it ended up being really good for some of the women, so I don't want to discredit it completely. It just wasn't what I needed/was looking for. The speaker was a young woman, a social worker who works with cancer patients. It seems that most of her experience came from the work place and not really on a personal level at all. Did I say, she just seemed "young"?? What does that make me? She also had really gorgeous hair that she kept fiddling with. It didn't really bother me, but I know that can be a sensitive thing to other women dealing with hair loss. I do give her the fact that of all the women to speak to, a room full of stage IV girls is not going to be an easy crowd.

For me, it was really stuff that I had heard or read before. It just seemed like common sense stuff to me, but I realize that my own personal life experiences with the loss of our Sunshine and Josh's mom before her was when I really learned a lot about grieving and grief. Josh and I have even given workshops on grief in the past at our local church association conferences. It really is an important topic though, and if you have never been introduced to the fact that grief can consist of loss of even small things, then it may help you to learn to work through those losses as they come. For women with breast cancer it can be many things, and with advanced breast cancer even more things. You have lost your breasts, your hair, your past sense of normalcy, perhaps your ability to have children or nurse any children you may have, your sense of "innocence" in life, and your ability to feel invincible. Some women may lose their spouse through divorce, their friends who cannot handle their diagnosis, and their very dreams for the future. For women with advanced breast cancer, we lose a lot of our week to treatments and recovering from them. We lose energy to take care of our families and spend time with them.

One of the quotes that really bugged me in the workshop was by Dr. Henry Cloud. "[Grief] is the process by which we 'get over it,' by which we 'let it go'. . . It becomes the process by which we can be available for new, good things. The soul is freed from painful experience and released for new, good experience." Then the speaker says something to the effect of--doesn't that just sound like a good ending. I actually laughed sarcastically out loud. Get over it. That just sounds sooo harsh. You don't ever truly get over it. Grief changes you, and yes, you can have good experiences, but that doesn't just replace the painful ones. The pain in my heart can still be felt as sharply and deeply when certain memories are recalled especially surrounding the loss of Sunshine. I haven't held on to them bitterly. They are just still there, and they actually help to make my new experiences good in that I can appreciate them even more fully. I could go on and on about this one. Since I am always one to give the benefit of the doubt, I guess you could say that by "letting go", you aren't dwelling on those losses bitterly to the point where you cannot function. But to say that so flippantly to a room full of women who have truly experienced losses, seemed so wrong. It definitely rubbed me the wrong way.