My "Rocky" moment

I went to the gym today and ran on the treadmill for the first time in a long time.  During chemo, I had worked up to running a little on the treadmill by the third week in the cycle.  Even then, it was only usually for 30 minutes.  But those last couple of rounds were tough, and I didn't have the strength or energy to quite get back to running.  I kept working out, but something about running is a step up in intensity for me.

Today I decided to try again.  I had already been to the gym once this week and did the elliptical and recumbent bike.  One of the keys to my continued interest in exercise is mixing it up.  I don't like to do the same thing 2 times in one week.  I'll work out 6 days a week, but do different things each day.  Not only does that keep it interesting, but it yields better results.  The muscles don't get bored with what you are doing and the cross training aspect makes everything stronger.  It's always got to be hard.  At least for me.  I also read that bouncing motions can help circulate lymphatic fluid. Running qualifies, right?

I decided to do a 60 minute interval training program on the treadmill.  It was basically 2 minutes of a run (about a 10.5 minute mile) and 2 minutes of a walk on an incline (15 minute mile).  I put on all of my Queen music on the iPod and got started.  I've liked Queen since elementary schools.  Their album "The Game" was one of the first I ever bought.

It felt fantastic.  The beat of the music was right in tune with my steps. The volume was high, and my endorphins made me high.  Several songs had lyrics that I was able to take and use in my situation to give me more energy than I thought was possible.  For example, "We are the Champions."  Obvious, huh? Of course, championing the fight over cancer and lymphedema.  In your face, disease! I am strong and I am running. You can try to beat me, but I'm stronger than you are. I felt like Rocky after he reached the top of those steps.  (I've never actually seen the original "Rocky" movie, but who doesn't know that scene?)  I also considered how we are the champions of the world in the sense that Jesus has overcome the world. I envisoned being clad in the full armor of God, with Jesus out in front doing battle with all of the bad stuff in the world-including cancer. And how we are victorious over all of it, even death. Oh yeah!     Another song was called "Don't Stop Me Now." That is exactly how I felt. Those who exercise knows what it feels like to hit that "zone" where you can do the work forever and you're loving it. That's how I was feeling.  Of course "We Will Rock You" has a beat that is like the banging of a battle drum. Call to arms, we are going to crush you!  Just for fun, "Bicycle Race" also had the perfect beat for my run.

I could have gone on longer than an hour.  I felt invincible. I made myself stop and stretch.  I had errands to do, so I couldn't stay there all morning. An added bonus was that I only wore my compression garments and not the full on bandaged arm.  Light as a feather, plowing down everything in my way. Absolutely fantastic.

The game plan for the lymphedema is in place as well.  I saw my PT yesterday.  She was very happy with the progress of my hand/arm.  To the naked eye, she said, there isn't a big difference between the right and left hand. Of course, I can see the difference.  The goal is to get me through the next 7 weeks of radiation without the arm getting bigger.  It's up to me to monitor it and take care of it.  At this point, she'll see me once a week to measure me.  I'm going to wear the bandages at night (which reduce swelling) and the compression garments (which holds the arm/hand at its current size) during the day.  I'll do lymphatic massage 2x a day as well.  Hopefully, that will keep things under control.  If not, we can always get more aggressive.  But the bandaging is really a pain to live in during the day.  I'd rather put my time in with it at night.  Cooking and cleaning with a wrapped hand is nearly impossible.

So that's it.  It has been a good day.  God is good and has renewed my strength.

Happy New Year!!

All that and a bag of chips

Snap!

Today we are trying a new treatment option for my lymphedema:  a "chip bag."

My physical therapist (PT)  measured my hand and arm at 5 centimeter intervals. The hand is looking better, although not measuring smaller.  There isn't any significant increased swelling in the arm, but there is some on the pinky side of my lower arm.  My upper arm actually went down a bit.  When we compared my measurements over the past couple months, the numbers were going up and down.  Definitely not stabilized. The chemo may have something to do with that.  I was glad to see that my Christmas hand flare-up has subsided.

When we went to wrap in bandages, my PT decided to make a couple of these "chip bags."  It is basically small pieces of cut up foam that we put into mesh fabric (the same fabric that is my base protective layer).  Then we wrapped the bag on my lower arm.  Because my hand was doing better, we decided to just bandage it without any foam or chip bag.  It will dimple my arm a bit, but hopefully break up the fluid and help it move.

As she was bandaging, my PT confirmed the conclusion that I had come to.  That this process if one of me learning how to read the signs and determine what it is my body needs to be treated with, and then be able to do it myself.  It is important to change it up, she said.  Lymphedema can adapt to the same wrap and methods.  So using a chip bag once in awhile, or foam another day, or if things look good, just the compression sleeve will be helpful.  She even said I could use a soft natural hair brush to use on my arm instead of my hands for the self-massage.  Just as an option to change things up a little and keep this disease on its toes. That is in addition to staying well hydrated, having extra special skin care/moisturizer, and avoiding cuts/scrapes/burns on that arm and hand.

I'm in learning mode.  I've ordered several books from Amazon about lymphedema.  My PT gave me a couple photocopies from her medical book with diagrams of the lymphatic system.  I was pleased to find out that there are some lymph nodes on the inside of the elbow.  Knowing that, I can direct the massage to that area from my hand/wrist area.  The human body has between 500-700 lymph nodes.  It's wild that just taking out 15 of them can wreak so much havoc.

It can be depressing as I realize that I have a chronic, non-curable disease.  (At least by human standards.)  That is how lymphedema is described.  It can be managed, but not cured.  Great.  I'm coming to terms with it, but still have some emotional swings.  So that is an area of prayer if anyone is wondering my prayer needs.  I need to stay positive and embrace the good things in life.  Not get bogged down in the heaviness of daily wrapping and other concerns that go along with lymphedema.

The next several weeks during radiation are going to be critical.  The radiation oncologist wants to treat my lymph node area, so there is a very good chance my arm will want to swell.  It's going to take a lot of care and babying of this arm and hand to try and manage it during this time and as my body heals from the radiation.

Steep learning curve

I've come to realize that I am on the beginning of  steep learning curve about myself.  More specifically, my left hand and arm.

I need to be aware of how everything will affect my body now.  For example, I've been reflecting on my hand swelling on Christmas.  Playing a simple child's game ended up with me getting my finger tweaked. As my therapist pointed out today, anyone would have a swollen finger after that.  It's just that I swell differently.  But it goes beyond the obvious.  Things I eat and drink can affect it too. Not too much salt, lots of water, limiting diuretic drinks like coffee. I need to use the arm, but not too much. Its going to be a fine line.  That part is a little hard for me, because I like to push myself physically.  Now, that can be detrimental when it comes to activity involving my left arm.  I need to learn to read the signs and know where that line is.

I'm also learning about how to treat myself. Eric and I are learning how to apply layers of bandaging and foam to treat swelling.  It is a pain.  Over the weekend  found some customized garments that were layered to do the same thing.  I asked my PT about it today.  She pointed out that doing your own bandaging gives you flexibility to address the swelling as it changes.  Good point.  There may be times when I only need to wrap my hand, other times, my whole arm.

I've been reflecting on my own reaction to this lymphedema.  It really has made me more upset than the cancer diagnosis.  Yet its not life threatening like the cancer was/is.  With the cancer, I was told up front that I was in for surgery, chemo and radiation.  Those things all had an end date.  I'm realizing that this lymphedema is a lifetime of watching and treating myself.  Keeping an eye on the size of my fingers, hand and arm. Comparing the left and the right.  If I'm going to engage in any "risky" activities (traveling, exercising, being in heat, etc), I need to take precautions.  It's not going to end.  It's my life.  So I'm coming to terms with that.   My physical therapist also mentioned that I not only have to be "kind" to my arm physically, but emotionally as well.  I need to accept this as part of who I am and not hate my arm and hand.  She mentioned another patient who had lymphedema in her legs and referred to them in the third person.  I can see how it would get to that point.  When I look down at my swollen hand, I get annoyed at this part of me that is turning against the team.  I need to accept this fact about myself and not detest my own body.

Another thing I'm realizing is that there are just some things that I cannot control.  I knew that about the cancer diagnosis as well.  But I was given a set of things to "do" to deal with this huge game changer that was put into my life.  I was warned about lymphedema, but was given a set of things to "do" to avoid it.  I did those things, and it happened anyway.  I think I've been trying to control too much.  In reality, something that I've known intellectually is true is being reinforced in a very real way.  I'M NOT IN CONTROL OF ANYTHING!  God is.  I'm weak and fragile.  He is strong.  I need to remember that and draw on His strength, and not try to rely on my own.  Because it won't cut it.  Not even close. Maybe He will deliver me from this trial.  Maybe He won't.  It's not for me to try to control.  I need to "let go and let God." In the meantime, I have a book full of promises that I can rely on and not freak out:

• God loves me and wants the very best for me.  He is there to give me strength and shelter from the storms of life.  He listens to me and hears my cries. I am not alone in this.
• He WILL work out all these things for my good.  And probably the good for other people too. 
• Regardless of my physical situation in this life, whether I have a recurrence or not, whether I am swollen on my left arm for all my earthly years to come, that this life is just a vapor.  It's a drop in the bucket when compared to eternity.  And because of Jesus' sacrifice on my behalf, I've been guaranteed eternal life in a body that will not be sick. Praise God!  

Red, green and a little bit of blue Christmas

It is Christmas Day!  Happy birthday, Jesus!  It is so strange to think of where I was a year ago and how much my life has changed since then.

I'm feeling a bit schizophrenic. On the one hand, there have been moments of incredible joy and delight.  On the other hand (the left one), I am fighting feelings of frustration and mild depression.

First some of the joy.  It's Christmas!  Who doesn't love that?  Last night, Jean-Marc was so excited.  We let the kids open one present on Christmas Eve-new pajamas.  The bow from the package somehow ended up on his behind.  As it turned out, he liked it that way. When the stickiness wore off, he wanted the bow back one so we had to get some tape to tape it to his butt!  Then he was doing this funny little happy dance on the floor.  It was a riot!  The older two kids were excited too. They went to bed really early.  Olivier in particular is being very skeptical about Santa and trying to bust the myth about all things Santa.  I keep telling him that Santa doesn't bring presents to unbelievers.

I spent the last 2 days in the kitchen cooking and preparing to cook.  That was why I wasn't able to update the blog.  I made a huge feast for Christmas Eve dinner last night-even down to a homemade apple tart.  It was gorgeous-something you would see in a pâtisserie!  I roasted a free range turkey, made some celery and leek stuffing, tried a new cabbage recipe with chestnuts in it, and added some rutabaga to my mashed yukon gold potatoes. All organic, of course!

I had an extra surprise for the family this year.  I bought a family gift to open yesterday afternoon....the game Twister. I thought it would be something fun for us to do.  It was.  We all took turns falling down and winning.  My brother Jared is a typical Graham.  He is pretty competitive and wants to win.  It's in the blood.  Anyway, I had challenged him to a game after beating the kids.  Boy, he was in it to win it! Rather than putting his hand or foot down on the spot closest to him, he would reach over and get into my space. It was a lot of fun.  At one point, he got a bit over-zealous to beat me to a spot and accidentally kicked my left index finger.  Ouch!  Okay, no biggie. But it was my "bad" hand. It was still fun.

I didn't sleep well last night.  I realized at one point that I hadn't put down Jean-Marc's "big" present.  Where was it??  Even though I thought I knew where I had put it, it was enough to disrupt my sleep.  Eric was another source of sleep disruption.  He came home from France fighting a flu bug and succumbed to it yesterday morning.  So he was moaning and groaning all night. Not his fault, but annoying anyway.  Then at about 5 a.m.,  my left hand felt swollen.  I had worn my compression sleeve/gauntlet to bed, but my hand was definitely bigger than it was the night before.

What the heck?  I was so discouraged and upset.  I did my manual drainage and spent some extra time on my hand.  I couldn't help but cry as I did it.  I felt like I had just taken 2 steps back after having taken 1 step forward.  My hand swelling had gone down by Wednesday.  It was looking better, even though not back to normal.  What caused today's swelling?  I have no idea.  Could it have been the kick in the hand from last night?  Or maybe my body is trying to fight off the illness Eric has.  I don't know.  But it looks like this condition is going to be ever-present with me.  I hate feeling fragile, like a walking eggshell.  I am getting physically stronger every day!  I just passed the 3 week post-chemo mark.  I don't want to be dealing with this for the rest of my life, but it doesn't look like I have a choice.  It makes me more angry than the cancer did.

So having that happen on Christmas morning was a bit of a bummer.  But the kids came in our room at 6:01 a.m. and were so excited, I was able to put it to the back of my mind.  As the day has progressed, my hand looks a little better.  I soaked in a warm tub of bath salts that mysteriously showed up in my stocking.  That felt good.  I wonder if bath salts are good for lymphedema?  Don't my midwife friends tell pregnant women suffering from edema to soak in epsom salts?  (Or something like that).  Regardless, the bath felt good and revived my spirits a bit.

Don't get me wrong, I'm not super-depressed.  I'm just annoyed and frustrated.  Lymphedema is not life threatening.  Cancer was/is.  So I popped my first two tablets of tamoxifen at noon.  Hopefully, I won't have any adverse reactions to that.  I had the scary thought wondering if I would be allergic to that.  What a mental battle this has been and continues to be!

My prayer requests:

• That the swelling go down in my hand/arm.  You wouldn't realized how often you see your hand in the course of the day.  Every time I see it all puffed up, those emotions are churned. Argh!  My body is revolting against me. I still have to do radiation to that area-I need to be able to control that swelling.
• That I do not have any adverse reactions to the tamoxifen. I'm already having night sweats and hot flashes.  Hopefully they don't get too much worse.  I'm pretty sure that I want this menopause thing to be permanent.  Why go through it twice?  In 2 years, they will test my hormone levels to see if I am post-menopausal. I just want to be able to take this drug.  So please pray for no allergic reactions to the drug. 
• That the tamoxifen be effective in preventing recurrence of cancer.  

Doing better

Thank you all for indulging me in my pity party over the weekend.  It felt good to just barf it all out there on the blog.

I am doing okay.  As everyone is, I have been very busy. That is why I haven't updated in a couple days. Christmas is this weekend, and I am hosting local available family here on Christmas Eve for dinner.  Not only that, I've been going to see the physical therapist every day.  AND, its raining like crazy here in North County San Diego.  I've been going back and forth to Escondido, where my parents live, so they can watch the kids while I do my medical errands.  The older 2 kids spent Monday night over there with some of their cousins and had a great time. My youngest brother is home from the Army too, so I enjoyed the time I was able to spend over there in between my comings and goings.  This lymphedema is slightly inconvenient!

My physical therapist and I continue to work on my hand and arm.  Each person is different, so it takes time to see what works for you specifically.  She feels like she has figured out my arm. My hand, however, is temperamental.  She wrapped my arm/hand lighter yesterday, but my hand still was swollen.  There was improvement of .5 cm.  But still puffy when I took the bandages off.  Today, she wrapped it with a piece of foam on the back of my hand to see how that went.  It may be counterproductive if my hand wants less attention.  We'll see tomorrow the effect of the foam.  I'll take Eric to the appointment tomorrow to start to learn the bandaging technique.

I had my eyes examined today.  After round 5 of chemo, I was worried about my eyes.  Not only were they watering, but they were oozing and crusty. Yuck.  The good news today is that my eyes are healthy!  Thank you Jesus for that.  My contact lens prescription hasn't changed, so that was good.  The watering eyes is common with chemo.  It's the body's way of trying to combat the dryness, she said.  It makes tears, but that doesn't really moisturize the eyes.  Kind of like putting water on dry skin...it can actually dry them more. She gave me an OTC eye drop to try.  As for the twitching eyes/eyelids....that is stress.  Who me, stressed?  Imagine that!  Who would have thunk it?

Anyway, I'm doing better. I feel like the other swelling in my body is going down.  This week is week 3 post-chemo, and unlike the last 18 weeks, I don't have to go in to get blasted with more chemo drugs on Friday.  It's time to recover and get stronger.  More white blood cells every day.  I'm still frustrated about my hand, but there is some purpose in it that God has.  I have no idea what it could be right now.  But I cling to Romans 8:28:  God will work ALL things out for my good.  I trust that.  Please continue the prayers for the swelling to go down.  That would be an awesome Christmas gift from above!

ENOUGH ALREADY!

Please indulge me for a moment while I whine.

But haven't I had enough already?  I mean, really!  I've sucked it up and then some.  Hello, Tonya.  You have breast cancer that has already spread to your lymph nodes.  You'll have to have chemo.  You'll lose your hair.  What kind of surgery do you want?  Single or double?  Lumpectomy isn't for you--your tumor is too big, and we think there might me another one at 6 o'clock on the left side.  Double?  Okay.  Chop-chop, all gone.  Fine.  Bloody fluid oozing out of tubes coming out of my sides?  Fine. 18 or so inches of ragged scar on my chest where my breasts used to be?  Okay.  They were trying to kill me anyway. I'll do what I have to do. Oh, and by the way-since we took out all your left axillary lymph nodes (they were riddled with cancer anyway), you have an impaired lymph system.  Just don't get cut/blood pressure checked/scratched/poked/burned/scraped on your left hand or arm for the rest of your life.  Might swell up like a balloon.  Alright now, chin up!  Here comes 6 rounds of chemotherapy. Take all these drugs to help you get through it.  You don't want to get sick now.  Fine. I did it.  Followed directions to the letter.  6 rounds of taxotere and cytoxan, done.  Months of baldness, of sideways glances from people-sometimes even my own kids.  Fine.  Half of my eyebrows gone, fine.  Fingernails that are yellowed and sore, fine. Beauty is only skin deep anyway.  Losing some of my physical conditioning--no more push ups for awhile.  Fine.  I'm in treatment anyway.  Chemo-induced menopause, welcome.  Your ovaries are fried from chemo. Night hot-flashes that mess up my sleep.  Fine.  The 2-5 years of tamoxifen was probably going to take me down that road anyway.  Now get ready to be blasted with radiation for 6 1/2 weeks.  You want to do all you can to make sure "it" doesn't come back.  Fine.  A lifetime of living with the specter of "it" coming back.  What choice do I have?  Fine.  I'll suck it up. Other survivors somehow seem to be able to do it, I can too. Fine. 

I've done every single dang thing I was told to do.  Even went to physical therapy "just in case" so I could learn the warning signs of lymphedema.  I did everything right.  

But I got lymphedema anyway.  Insert your preferred expletive here.

It's just not fair.  But life just isn't fair.  Sometimes it sucks.  And right now, I'm pretty ticked off at my arm and hand.  

I sucked it up and wore that uncomfortable sleeve all day and night yesterday.  I did take the top layer off before bed, but it didn't make that much difference.  I took it all off at 6 a.m. this morning.  My arm looked better, but my hand did not look like my own.  It looked like someone had replaced it with a surgical glove that they had puffed air into and tied at the wrist.  I spent over 30 minutes doing manual lymphatic massage to try and get it down.  I kept my compression sleeve/gauntlet off for an hour or so to see if it my hand would go down.  After breakfast, it did seem to be better.  Not great, but better.  

So I put the sleeve/gauntlet back on.  (I need to come up with a shorthand name for it).  The two younger kids and I went out for a few hours to shop. Olivier was at an all day boy scout leadership training session. We had a great time at the Vista Farmer's Market and went to the mall to do some Christmas shopping.  Isabelle's riding lesson was canceled because of the rain, and she loves "the mall."  In the middle of the expedition, I looked down at my gauntlet-clad hand and the puffiness was spilling out over the top.  I took the gauntlet off, and my hand had swollen up even worse than in the morning.  I even wondered, how far can my skin stretch?  It was awful.  Could the sleeve be actually trapping or forcing fluid into my hands?? What will happen if I keep them off?  Will my arm swell up again?  

I still don't know the answer.  Right now, I've had them off for about 3 hours.  My hand is down. I'm going to work out later and do some more manual drainage.  I'll really examine the arm then to see.   It seems to be a little swollen, but maybe its the angle.  I need to get in front of a mirror and really see what's going on.  

Why can't this just go away already?  Whine, whine, whine.  Stamping my feet.  I've done everything I was supposed to do!  I'm still doing everything I'm supposed to be doing.  Well, except wearing the sleeve right now.  But my hand was a freak show and I panicked.  

I'm also really frustrated that this is happening right before Christmas.  I want to enjoy the holidays.  Chemo is over, man!  I wanted to really celebrate this year. But I can't.  Because I'm freaking out about my hand and arm.  I feel like I'm being cheated out of my Christmas.  It sucks, and I'm mad as heck about it.  I want to be carefree and happy, enjoying the season with my family.  They've been through a lot too.  They deserve to have me present and available to them.  I don't feel like I am right now.  My mind is in a twist about this stupid lymphedema.  They are being ripped off too, and its not fair to them.

ENOUGH ALREADY!!  

Please pray for my arm and hand.  That this lymphedema go away.  That my physical therapist and I have wisdom about how to treat the condition if its God's will that I deal with it.  That I be able to put all of my worry and angst in a mental box and put it away for periods of time so I can spend time with my kids and have holiday fun.  

Mixed news

I went in for my second physical therapy appointment in as many days. We took off the layers of bandage to see how my arm and hand looked. To me, they looked puffy and wrinkly. But being taped up will do a little of that. We measured my hand, wrist and arm in various places and compared them. My hand measured smaller than yesterday by .5 c.m. Yeah! That is good news. My lower arm was still the same. Bummer. Looking at all of my measurements since September, there is a definite upward trend, which is not good. The bottom line is that I need to learn how to do the bandaging, get some of my own and monitor my arm and hand for the rest of my life.When it gets big, its time to wrap it up.  I'll always need to be careful of changes in elevation, travel and other things that may trigger swelling.

My therapist had me wash my arm in the bathroom and did another round of manual drainage.  She watched me doing some of it and said I was doing it right.  That was good to know. Then she re-wrapped my arm, using a different wrap technique.  I'll wear the wrap until tomorrow morning (Saturday).  Then I can take it off and wear my compression sleeve until Monday, taking it off at night.  Hopefully today's bandage will bring the swelling down and the compression sleeve will keep the size where it is until I see her on Monday.  I have appointments with her Monday, Tuesday and Wednesday for the next two weeks.  She wants me to bring Eric in so he can learn the wrapping technique so he can help me.  It's kind of difficult to bandage your own arm.  Even if it is the left arm.  Eric is out of the country until Tuesday night, so he'll come with me on Wednesday.

Todays wrap is more uncomfortable.  Even typing with my left hand is tiring.  I went to the gym after my appointment and couldn't hold onto the handle of the elliptical for very long.  For anyone thinking that exercising out with this is bad, its just the opposite. She said working out with the bandage on is one of the best things to do.  I'm supposed to use the arm as normally as possible.  But just moving is difficult.  I'm going to wear this bandage tonight as long as I can.  Hopefully I can stick it out until tomorrow morning.  If it gets too bad, she said I can take the top layer off.

The allergic reaction has caused swelling all over my body.  My mom said my face even looks a little swollen. I "weigh in" every Friday and the scale showed an increase of 3 pounds in one week.  I just know that is water and fluid retention.  There's no way I gained 3 pounds from pigging out and slacking off.  I need to get this fluid out.  My therapist recommended drinking lots of water.  I can do that.  If I can address the issue all over, it should help in my left arm as well.

The kids are out of school for Christmas vacation.  They are very happy to have 2 weeks off from school.  This fall has been hard for them.  They are doing great academically. I'm amazed at how well they've done in the face of my drama.  But it has been hard for them to hold it together.  It will be good for them to have some time off.  I need to try and downplay my lymphedema issues so they don't worry.  Besides, I'm ticked off at it to the point where I say, "Screw you, lymphedema! I'm going to live my life and enjoy doing it!"  I still have some Christmas shopping and errands to do.  Having so many therapy appointments will make that a little more difficult, but such is life.  At least mine right now.

My prayer request is for this swelling.  That the bandaging be effective to bring the swelling down.  Better yet, that God just heal my arm and hand of this condition.

Just for fun-Merry Christmas!

Laughter is the best medicine!

Mummified

I had my physical therapy appointment today.  She measured my arm, hand and wrist.  This time, she's measuring in more frequent intervals so we can keep a closer eye on my swelling.  Just as I had feared, I had "significant" swelling-at least 2 c.m.  Aaarggh!

We started by doing a session of manual lymphatic drainage.  It really helps to have the therapist do it.  She can use 2 hands whereas I can only use 1.  I'm never really sure I'm using the right amount of pressure.  It has to stretch and release the skin, but shouldn't be too much pressure.  With her, I know its being done right.

Sporting my bandage

Then it was onto being bandaged.  Bandaging is supposed to make the swelling go down. It makes wearing my compression sleeve feel like wearing flannel pajamas. It is no less than 4 layers of bandage and padding.  It goes up to the first knuckle on my hand as well.  It takes a lot of effort just to bend my elbow.  I'm supposed to use my arm, though.  I asked if I could get it wet.  Nope. At least not from bathing or doing something like dishes.  But she said I could work out and sweat in it.  (Although that may be a problem if I can't really bathe!)  I had to work out today, though.  I missed yesterday with all of my errands and really need to get moving.

I also want to work out as planned just as my way of saying, "screw you cancer and lymphedema!"  It has interfered with my life so much, I don't want to let it take this away from me too.  As long as I don't do anything new, its okay. I even mentioned I planned to do a Jillian DVD and she said that was fine.  I was able to do it, take that lymphedema!   I also was able to bathe by filling the bathtub up with about 6 inches of water and using a washcloth and only using my right hand.  I put my left hand up against the wall to keep it out of the water.

I go in again tomorrow morning at 8 a.m. to have my arm re-checked.  They physical therapy department is making special accommodations to let my my therapist come in early to see me.  (Such a difference from the rude urgent care department that wouldn't even see me during their posted business hours!)  Hopefully, I will measure smaller and we can take this bandage off.  I don't know, it may take a week or more of wearing it. I'll probably be going in to see her next week as well.  We really want to address this pronto, especially before I start radiation in January.  A survivor sister told me that if lymphedma is caught within the first 3 months, its reversible. Hopefully my hyper-awareness will pay off and we can fix this.

I found out today that another mom in my daughter's class just found out she has breast cancer and is getting a double mastectomy.  I have other friends who are in the process of finding out if they have various cancers.  Is it just me, or does it seem like we have a cancer epidemic?  I've said it before, and I'll say it again.  I yearn for the day when there is no more sickness and no more tears and we are face to face with our Lord Jesus!

My prayer request is for my arm. That this swelling go down so I don't have to bandage myself up very long.  Pray also that my spirits stay up.  It would be very easy to let this depress me and get me down.  Being able to work out helped a lot.  But I can see this making it difficult to sleep, and I've been having a little bit of sleep problems this week already.

Mapquest

Today I went through what someone described to me as, "the most difficult part" of radiation treatment-mapping.  If that is the case, radiation should be a snap.  Although I may feel differently once my skin starts to feel the effects of the radiation burns next month.

The radiation tech (I'm not sure what his exact title is) had me lay down on this CT scanner, stripped to the waist.  I had a gown on that was open to the front.  He had me grab onto the handle bars, which put my arms above my head.   He told me he was putting marks and some wire on my chest.  I just laid there and relaxed.  I didn't sleep very well last night, so it was easy for me to zone out.

After awhile, he was ready to start the scan.  I was told to lie perfectly still.  The table started to move me into the donut hole.  Wouldn't you know it, I started to feel little itches on my nose, my ears, and other places.  Mind over matter!  The scan itself took probably about 10 minutes.  Then the table slid me out, but I wasn't able to move yet.  The tech went away and told me they were doing the calculations for my treatment. That took the most time.  It was no big deal, I just let the random thoughts go through my head.  Some of them:

• They lyrics to one of the songs we have sung in church recently: "You stay the same through the ages, Your love never changes.  There may be pain in the night, but joy comes in the morning. Your love never fails..."
• What I was going to get my dad for Christmas.  
• Am I "equal" enough in the presents for the kids?  Maybe I need to do a little more shopping for one of them?
• Bummer, I won't have time to work out today.
• I have to figure out how to make French "madeline" cakes for Isabelle to take into school tomorrow for her cultural food fair.  What did we bring 2 years ago when Olivier was in the 4th grade?
• I wish I could snooze right now.

It probably took them about 15 minutes to do all of the "micro physics" calculations.  Then the guy came back and told me it was time for the tattoos.  Yes, that's right.  I now am sporting 3 tattoos.  It did hurt a little bit, but after all of the pokes I've had over the past 6 months, it was no big deal.  They aren't really that noticeable, they are just dots.  They look like black freckles.

I need to get one more set of lab work done before the radiation starts, just so we can be sure my blood counts have come back to normal levels.  I think I'm going to give it at least a week before I go in for that.  

I'll start on January 3rd.  The first day, they will just take X-rays.  It will be a test run to make sure they have everything lined up correctly.  Better to test it before they start zapping near vital organs.  I remember the radiation oncologist saying they would "shield" my heart.  I don't want them making any mistakes!   From January 3rd, until February 17th, I'll be going in Monday through Friday at 8:45 a.m.  Each treatment should only take about 10 minutes, and I'll meet with the doctor about once a week to check on my skin condition and how things are going. 

February 17th, that's the big day.  The end of my active treatment.  I'm a bit ambivalent about how I feel about that.  I'll still be on tamoxifen for a few years, so I'm still technically "in"  treatment.  I'm happy to see the "end" of treatment, but on the other hand, am wondering how it will be to live life post-treatment.  I'm not sure what to call it.  In remission?  No evidence of disease?  I don't know. 

Tomorrow I go to see my physical therapist to treat the swelling in my left hand and arm.  Please pray that we are able to get it to go down.  I've been doing what I know to do, with no effect. 

Proof of pure joy

Jean-Marc meets Santa for the first time

See what I mean about pure joy??

Pure Joy

Taking a break from yucky cancer news.

Jean-Marc is just such a source of joy right now.  He absolutely LOVES all of the Christmas stuff.  The music, the decorations, Santa, Frosty the Snowman, the tree, you name it, he loves it.   It is so much fun introducing him to the Christmas stuff, and he hasn't even seen Rudolph yet.

Of course, we do talk about baby Jesus.  In fact, the first time he saw a picture of Santa, I asked him who he thought it was and he exclaimed, "Jesus!"

He has a particular fancy for snowmen.  I bought him a little ornament last Saturday of a snowman. I let him choose whichever one he wanted in the store.  He doesn't quite understand that it should stay on the tree.  He wants to carry it around the house.  It's okay, it makes him happy.  I have the DVD of "Frosty the Snowman" and I put it on today while I was wrapping presents.  Now he goes around the house singing "Frosty the Snowman!  Frosty the Snowman!"  He's added to his repertoire of "Jingle Bells...Jingle Bells....Hey!"

Another favorite is "Charlie Brown's Christmas."  I have the DVD that I play in the car while we are running errands.   It cracks him up.  He puts his hands to his cheeks and yells, "Rats!" just like Charlie Brown.  We were in Hallmark today and they had a lot of Charlie Brown stuff.  I bought a package of napkins to use on Christmas Eve.  He doesn't get their utilitarian purpose.  He thinks its for him, so he wanted to take them to nap with today.  Whatever.  Like the snowman ornament, it makes him happy.

The neat thing about it all is that he has no clue about the present end of Christmas.  He is in it for the pure joy of Christmas, not what he can get out of it.  It is so innocent and sweet, and brings joy to my own heart.  That innocence is precious, one of the things the season is all about. It's sad to think that by next year, he probably will have been a little bit spoiled by the gift end of it.

Tomorrow, he gets to meet Santa.  This morning, I asked him if he wanted to meet Santa.  With eyes shining, he said, "Yes!"  Then I asked him if he wanted to sit on Santa's lap.  He wasn't so quick to answer.  A little crease went across his forehead.  His slower answer was...."No."   I explained to him that the kids tell Santa what they want for Christmas.  He kind of warmed to the idea.  We'll see how it goes tomorrow.  If nothing else, I'll have a picture of my third child screaming on Santa's lap.  It will match my other two!

Back to me.  Because that's what this is all about right?  ;-) I'm doing better today.  I'm still swollen, but the hives and rash have faded.  Dr. P called again today to check on me, which is nice.  The nurse I talked to on Saturday night also called to see how I was doing.  I appreciated that and let her know.  I'm still ticked at the doctor who was in such a hurry to get out on Saturday.  I was able to get an appointment with my physical therapist for Thursday.  Hopefully doing the lymphatic massage and exercises and seeing her will help resolve any lymphedema.  I'm not sure the swelling is that because I am puffy elsewhere too.  But hives can trigger it, so I want to do everything I can to avoid it.  Especially since my radiation oncologist wants to treat the underarm (axilla) area.  If he thinks it needs to be zapped to treat this, I want it to be zappable.

Anyway, I hope everyone is able to find some pure joy this Christmas season.  There is nothing like the innocence of a child marveling at all of the beauty around him to give a person a piece of it.

Falling apart

When it rains, it pours.

The hives were definitely from the Cipro.  I spent Friday afternoon and evening watching my entire body turn into a red, swollen hive.  I was taking 1 benadryl, hardly able to go 4 hours in between doses.  By the evening, my stomach was cramping up.  I don't know if it was from the benadryl, or the anxiety.  Before I went to bed, I noticed my left wrist kind of swelling up.  (Uh oh...lymphedma!)  I put my compression sleeve and gauntlet on before I went to bed.

Before getting into bed, I prayed for deliverance.  Literally crying out to God for relief.  I didn't sleep very well the first 3 hours.  At 1:30 a.m., I took another benadryl, which knocked me out until the morning.  When I woke up, my left hand was puffed up like a balloon.  My fingers that stick out of the gauntlet were like swollen sausages.  The hives seem to have triggered lymphedema.  I jumped out of bed and did my manual lymphatic drainage as well as some lymph exercises to try and get the lymph fluid to drain out of the hand and arm.

Eric left for France the day before, so I had to take the dog for a walk.  The benadryl made it really difficult to do-I was so wiped out.  To add to the drama I had to deal with, Jean-Marc decided the night before that peeing in his pants was going to be just fine.  He did it about 4 times over Friday night and Saturday morning.  Why do kids pick the time when you are least able to cope to do silly stuff?

On Saturday morning, I had to take Isabelle to her riding lesson today, which is on the other side of town.  Jean-Marc and I went to the park while she rode.  All morning, the hives were driving me insane.  Seriously insane.  I couldn't help but scratch.  Once I started, I couldn't stop.  It was maddening.  Words can't even describe how I was feeling during these episodes. My legs, stomach and chest were on fire.   When I got home, I soaked in an Aveeno bath.  That helped relieve the itch, but after about 45 minutes, I got cold.  I was good after that for about a half an hour, then I took another benadryl.

After I got out of the bath, I went downstairs to cut out Christmas cookies with Isabelle. (Trying to keep things normal for the kids.)  I opened my mouth to say something, and my voice was a croak.  I didn't think much of it at first, but then remembered something one of my Aunts had said on Facebook about one of her own allergic reactions to medication: anaphylactic shock.  When my mom came over later on, she had the same concern.   She asked how many benadryl I had been taking.  When my dad was having reactions to bee stings, he would take more than one.  So I took one more and we called the Kaiser nurse advice line to see how many I could take safely.  Mom did the talking for me, since I still had no voice.  They told her they would call back.  Meanwhile, the itch had come back and was driving me crazy. I had hives on top of hives.  Mom put some 1% hydrocortisone cream on my legs to try to assuage the itch and my legs looked like pink cottage cheese. We decided to go to Kaiser's urgent care.  Maybe they could just give me an epi shot or something.

We got there around 4:30 p.m., but by the time we found where to go, it was about 4:45 p.m.  I was in black sweats, a zebra bandana on my head an no makeup.  Full-on cancer patient look.  By then I wasn't  feeling as itchy since the second benadryl had kicked in, and some of the hives had faded a little.  But my voice was still bad.  The receptionist asked if I had an appointment and I said no. (Isn't that the point of urgent care?)  She got the nurse to come and have a look at me.  The nurse took us back and took my vitals.  I explained the situation to her and she went to "ask the doctor to see what they could do for me."  She came back and said I should go to Palomar Hospital's ER because they were going to be closing in 10 minutes.

Excuse me??  The doctor didn't even come and look at me!  They still had 10 minutes!  They are going to send someone a week out of chemo with low white blood cell counts to a hospital ER?  A cesspool of germs?? To sit for hours before being seen?  I explained this to the nurse, but she said there was nothing she could do.  I should have come in earlier.  Well, we tried calling and were waiting for a call back that didn't come by 4 p.m.  Yeah, thanks for nothing.  I called Palomar's ER to see how long the wait would be, since Kaiser was kicking me out.  I was told 3-4 hours.  No way.  I'm immune depressed right now.

We went back and asked the receptionist to see the nurse one more time. I still needed to know how many benadryl I could take safely.  The nurse said she wasn't "qualified" to answer the question.  I said, well, maybe you could go and ask the doctor?  Or perhaps there is a topical cream that he could prescribe that would help get me through the night?  The receptionist and nurse started whispering to each other and the receptionist got on the phone.

I just stood there, in shock and dismay.  Seriously.  I've been through so much in the past 6 months and have sucked a lot up.  I'm not a complainer.  Here I am, in need of some help, and because some jerk doctor wants to walk out the door at 5, I'm being told to risk my health by sitting in an ER for 4 hours??  Amputating my breasts, 6 rounds of chemo, drugs up the wazoo, and some idiot doctor won't risk staying a few minutes late to see me?

I decided not to suck it up any longer.  They may send me away, but they are going to know how they are making me feel.  They may send me away, but if they have an ounce of heart, they are going to feel like crap doing it.  I let the tears roll down my face.  Who cares?  They certainly don't.   Of course, that made my mom cry.  So there we were, crying in their faces while they were on the phone.  Then they handed the phone to me...apparently, they called an advice nurse down in San Diego.

The advice nurse asked me the same questions about my situation.  Where was the rash?  Head to toe, literally. Because of that, she said a topical cream wouldn't really be an option.  How bad was the itch?  On a scale of 1 to 10, its an 11 or 12.  Off the charts.  Could I breathe?  Well, yes.  But at times, I would have some shortness of breath.  But that could be from the insane itch.  That was their main concern-that my throat would close up and I wouldn't be able to breathe.  She said it sounded like I needed a steroid shot, and my options to get that on a Saturday night were to go to the ER, or drive down to Mission Valley to another Kaiser facility.  I seriously did not want to do either.   I would live with the itch until the morning, when they could give me an appointment.  At that point, the benadryl was fully in my system and it was manageable.  The nurse said I could take 2 Claritin on top of the benadryl, which I could take 2 every 6 hours.  That should get me through the night.

We got home and ordered pizza for dinner.  I had food I could make, but just didn't have the energy to do it.  Besides, the kids would like it and we could turn the situation of having grandma and grandpa over to have a little fun.  We put "A Christmas Story" on the TV and tried to make the most of it.  My mom decided to spend the night just in case I had an emergency.  We set her up in Isabelle's bottom bunk.  Isabelle was stoked to have a sleepover with Grandma.

Before I went to bed, I fully dosed up on the Claritin and benadryl.  The rash had been moving around.  At that point, it was spreading onto my neck, face and head. I did my lymphatic massage and exercises, trying to get the swelling to go down.  Then I got down on my knees and prayed to God for help. I didn't have a lot to say, just help.  Help these hives go away.  Help the swelling to go down.  Help me to be able to sleep.  I was so messed up, I didn't know what else I needed.  Just help.

Thank the Lord, He did answer that prayer.  I woke up 9 hours later, and had a good night of sleep.  I figured I would be up around 3 a.m. to take more medicine, but I didn't need to.  I still had rash on my head and face, but the itch wasn't insane.  There were still spots other places too, but it was manageable.

Considering I was improved, even though not fully healed, do I keep the 9 a.m. appointment?  I knew if I went in there in my improved condititon, I would feel a little bit like Chicken Little.  I was pretty sure the doctor I had the appointment with was the same one who caused me so much angst the night before.  I didn't want to show up all better and not really needing to see him.  I did last night, but this morning was a different story.  I decided rather than going to Kaiser, I would go to church instead.  At the beginning of my treatment, I had told myself I didn't want to miss a day of church because of my treatment.  I did miss 2 Sundays, but it was for the "Making Strides Against Breast Cancer" walk and the Charger game when I was one of their "Survivors."  This would have been the first.  Screw cancer!  I popped 2 benadryl and went to church.

I'm pretty sure I'm on the mend.  I noticed on my phone today that I had a voice mail from Dr. P, my oncologist. He left it last night.  He told me that if my rash was still bad at my 9 a.m. appointment, they would prescribe me prednisone, a pretty heavy steroid.  I could take some of the medication that I took around chemo time if I had some left (I do).  It's also a steroid.  I was glad to see that he called, particularly on a Saturday night.  That's a far cry better than the urgent care doctor.   At this point, I'm not going to take the steroid.  My left arm is still swollen and I am concerned about it.  I'm going to call the physical therapist tomorrow morning and see if I can get in to see her as soon as possible.  I'll keep doing the lymphatic massage and exercises in the meantime.  I did a quick 30 minute cardio workout, and my legs felt like lead. But I did get a sweat on and that made me feel better.

I would say that the last few days definitely were among the worst of the last 6 months.  It was a little bit like the straw that broke the camel's back when I wasn't able to be seen by a doctor last night.  My body has been through so much over the past few months, I just felt like I was literally falling apart. Today, after a night of sleep, I feel much better.

My prayer requests:

• That the swelling in my left arm go down.  I'm a bit swollen everywhere, so I'm hoping that the left arm and hand will go down when everything else does. But it is more swollen than the right, and I know I'm compromised on that side. 
• That the hives continue to fade.
• That I be able to manage the house, kids, and their activities this week while Eric is gone.  That I be able to do it with grace and love.  I need a big dose of the Holy Spirit! 

Itchy!

Last night was a pretty typical night for me.  Cycles of hot flashes, sweating, kicking off sheets, pulling them back on.  I also felt myself scratching my sides and arms through my pajamas.  I woke up to a pretty bad case of hives. They are all over my body: my sides; belly; back; and legs.

I'm not sure what is causing this reaction.  I didn't eat anything new yesterday.  I didn't use any new lotions or soaps.  Could it be the Cipro?  It's a pretty strong antibiotic.  I've been on it since Tuesday.  On the other hand, I've done a week of Cipro for the last 5 rounds with no reaction.  I decided to hold off on this morning's dose and e-mail Dr. P.  He has been pretty responsive to e-mail in the past. 

I was able to cope pretty well this morning. It was there and annoying, but I was able to workout and go grocery shopping.  

I didn't hear back from Dr. P this morning, so at 11 a.m., I decided to call the oncology department.  After all, it is Friday.  I don't want to have to deal with an ER visit over the weekend.  It's the first time I've had to call for advice my chemotherapy.  The operator told me that Dr. P was out of the office until Monday.  I asked to send a message to another doctor.  If I wait until Monday, I would be almost through the Cipro.  I needed some guidance today.  After leaving the message, I decided to take the first dose of the day and see if it made the hives worse. 

I heard back from an oncology nurse a few minutes later.  She suggested that I treat the symptoms with benadryl and topical creams.  I had some old benadryl, so I took one.  Anything to help the itch, which had grown worse.  She thought the chemo was probably the culprit, not the Cipro.  She passed my information onto the on-call oncologist.  

I am pretty impressed with the oncology department at Kaiser.  I heard back from the oncologist via e-mail shortly after that.  This was a little over one hour after my initial phone call.   His advice was that, while we can't be sure its a reaction to the Cipro, I should stop taking it and use benadryl to ease the symptoms.  That is good and bad news.  I'm more than happy to stop the Cipro.  We are using it prophylactically so I don't catch a secondary infection.  If I am careful about germs and God watches over me, I should be okay.  (Well, I know He's watching over me regardless)   The bad news is that I just took a pill an hour ago.  Since then, my right eyelid has swollen up and I'm itching like mad. 

My mom is going to be coming over later to pick up Olivier to spend the night at her house.  She's coming to my rescue as well with new benadryl and some aveeno bath.  

Hopefully I won't go insane before these hives go away.  As you can imagine, my prayer request today is that these hives go away.  I also need prayer that I don't get sick or have some negative consequence from stopping the Cipro while my white blood cell counts are probably very low.  

Good news!

I just saw this on Livestrong: 

In study, lifting weights does not raise risk of lymphedema for breast cancer survivors

By Jeannine Stein, Los Angeles Times

December 8, 2010, 4:07 p.m.

Breast cancer survivors sometimes avoid strength training for fear it could increase their chances of lymphedema, blockage of the lymphatic system. But a study finds that a yearlong weightlifting program did not raise the risk of lymphedema among women who had had breast cancer.

The study, released Wednesday in the Journal of the American Medical Assn., followed 154 female breast cancer survivors who had at least two lymph nodes removed but were without symptoms of breast-cancer-related lymphedema when the study started. Removed or damaged lymph nodes can upset the normal lymphatic drainage process, often causing arm swelling and discomfort.

Half of the study participants were randomly assigned to a weight-lifting program, which included 13 weeks of instruction at a gym, a gym membership and nine months of working out on their own. The other participants did no exercise and served as a control.

In the weightlifting group, 11% of the women had an onset of lymphedema, versus 17% in the control group. When researchers looked at data on women who had had five or more lymph nodes removed, 7% in the weightlifting group and 22% in the control group had an onset of lymphedema.

Many breast cancer survivors avoid exercise or even lifting heavy objects, fearing they'll trigger lymphedema. That can lead to weakened muscles and injuries.

Those in the weightlifting group got stronger (no surprise there) and had a lower percentage of body fat that those in the control group. Food intake didn't differ between the groups.

In the study, the authors wrote, "The findings of our study remove concerns that slowly progressive weightlifting will increase risk of lymphedema onset in breast cancer survivors."

Copyright © 2010, Los Angeles Times

At my fingertips

Every day is better than the last.  I've still got symptoms, but at least I feel a bit more like myself each day.

First and foremost of the symptoms is discomfort in my fingertips and fingernails.  The bruised look has spread to more of them, and they are very tender.  Deep ridges have formed and they look dry and brittle.  The look is secondary to me.  Having tender fingers is more of a pain, literally.  I work a lot with my hands in the kitchen and with my kids.  It doesn't help that I burned my right ring finger on the oven a few days ago!

I've also got a solid case of "chemo brain."  My memory has huge holes in it.  The kids think its pretty funny, and even have Jean-Marc chanting, "chemo brain."  As an example: last Saturday my brother apparently invited us to join him, my parents and my other brother and his family to go to an Iraqi restaurant in San Diego.  The invite was transmitted via Eric. I didn't get the part that we were invited-I just heard that my brothers were going to eat Iraqi food.  The next day, my mom asked why we didn't go.  I had no recollection of being invited! I was a bit annoyed at Eric and let him know when I saw him again.  He defended himself, and I didn't believe that he had transmitted the invite.  Olivier was sitting there and said, "Uh, yeah, mom.  We were invited."  I had absolutely no memory of it.  That is just one example.  I'm hoping that with time, my memory will not have gaping holes in it.

My taste buds are slowly returning.  They aren't 100% yet, but each day food tastes better and better.  My entire digestive system seems to be getting back on track.  All the drugs around chemo time tend to block my system.  It feels awful.  But that is behind me now.

Physically, I'm weaker than I was.  But getting better.  I did my Jillian "Banish Fat Boost Metabolism" DVD today.  It was really hard, and I had to drop the arms a little by the end.   I sweat like a dog and it felt great.  Almost like I was sweating the nasty drugs right out of my system.

One thing that I haven't blogged about much yet is the menopausal symptoms I've been having, particularly hot flashes.  I seem to have them most at night.  They've started a little in the evenings as well now.  I sleep with a knit cap on my head because of the cold.  But I'm awakened at least 3-4 times a night hot and sweating.  I take the cap off my head, and my head is drenched and the pillow is soaked. If I'm fortunate, I'm able to get back to sleep, only to have the cycle repeated awhile later.  I've had to wash the pillowcases, my pajamas and my knit cap a few times this week.  From what Dr. P tells me about tamoxifen, I might as well get used to it.  If it interferes with my sleep too much, he would be happy to prescribe something.  But I'd rather stay away from drugs if at all possible.

My prayer requests:

• That the six rounds of chemo that I've gone through will have been effective against my disease.
• That my family and I can trust God enough not to worry about the cancer coming back after all of my treatment.  This one is huge for me right now.  I'm not even done with treatment, and I find myself constantly fretting about recurrence.  I don't want to live the rest of my life (and a long life at that), in turmoil about cancer. It drags me down and sometimes I feel like I'm marinading in a swamp of cancer fear.  
• That the pain in my fingertips subside. 
• That I get my wits about me again...that chemo brain go away.  

Elizabeth Edwards

After just hearing yesterday that Elizabeth Edwards' had taken a turn for the worse, I found out today that she died of her breast cancer.  So sad.

I hope Isabelle doesn't hear about it.  If she does, I hope they don't point out that it was breast cancer.

After all of the emotions from last Sunday about the parade, she and I had a good talk about how she was feeling.  Bottom line is that she is scared.  She is scared that I am going to die.  So hearing that someone that has died from breast cancer would not be a good thing for her.  I told her all the things I remind myself daily: that we have to trust God. That He will work out all of this for our own good.  That He loves us and will do the best for us.  Like me, she will have to learn to walk the walk and not just talk the talk.

I was glad that she opened up to me.  She feels bad that so many of her friends don't understand.  But how could they?  Unless you've walked a mile in someone else's shoes, you have no clue.  You can try, but there are limits.  She is lucky to have a friend whose mom went through this a year and a half ago.  She gets it.  I told Isabelle that she will be able to support someone in the future who needs to talk to someone who has been there.  I can't help but believe that is one of the reasons that we are facing this trial.  So that down the road, we may be able to comfort others as Christ has comforted us.  (³ Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, ⁴ who comforts us in all our tribulation, that we may be able to comfort those who are in any trouble, with the comfort with which we ourselves are comforted by God. (2 Corinthians 1:3-4, New King James Version)


I told my sobbing daughter that not all cancers are the same.  Not even all breast cancers are the same. I asked her if she knew about "the medicine."  I explained the concept of tamoxifen to her. How I was going to be able to take a medicine that would help prevent the cancer from coming back.  I would be able to take it for several years, and each year that the cancer stayed away, the better it was for us. That made her feel better.

For me, it was tough to hear about Mrs. Edwards losing her battle with breast cancer. It is hard for me to even really read blogs or bulletin boards of women who have stage 4. I would rather bury my head in the sand and not think about it.  It is my worst fear. But like I told my daughter, I have to trust God and all that He has in store for me. Whatever that is.

Putting one foot in front of the other

Today is day 3 of my last round of chemotherapy.  Historically, it has been my "worst" day.  This time, I sunk into it a bit early.  It is still hard today, it just started late Saturday this time around.

Once again, I was blessed to have my mom take Jean-Marc for the day and overnight.  She even came by early enough to take Isabelle to school this morning.  I didn't have to go anywhere today.  A day totally to do whatever I needed to do.  What a concept, even in the midst of cancer.  

The hard part is shutting my brain off from all of the things I know I need to get done:  laundry; some Christmas wrapping; decorating the tree; picking up the clutter; getting organized for Christmas; etc.  Today, it is down to the bare minimum.  I'm in a fog anyway. If I tried to start anything, I would end up with lots of stuff just taken out and the house even more cluttered than it was when I started.

I started the day with a little bit of a workout from Exercise TV.  I can't describe how important it is for me to get a little bit of exercise every day.  Breaking a sweat and getting those endorphins going has made a huge difference for me.   I did a 30 minute cardio workout that a year and a half ago used to kick my butt.  I barely broke a sweat, which made me laugh.  Exercise TV had Jillian's new ab workout, "Six Pack Six Weeks" or some such thing.  I didn't have the mojo to do that today, but I watched it and can't wait to give it a shot later in the week.  

I got a black eyed pea salad for lunch marinading in the fridge and spent the rest of the morning and early afternoon on the couch.  Around 3 p.m. I was feeling a bit like a slug, so I took our dog, Lucie, out for a walk.  It felt good to get the blood flowing again. 

The thing with chemo is that I just don't feel like myself.  Maybe that is why it feels so good to get a little physical-it reminds me of who I am.  For a few moments, I feel a little like myself again.  Even if I am a bit dizzy.  Aside from that, I'm in a mental fog and on an emotional edge.  As I walked with the dog, I just put one foot in front of the other.  Head down, one foot in front of the other.  

That is how this whole cancer thing has been.  I've just had to put my head down and put one foot in front of the other.   To do what I've had to do to get through it.  I didn't ask for it.  I still think about that phone call on June 11 when the Kaiser nurse told me that, "unfortunately, there was cancer."  From that point on, I've been told what I've had to do to get through it.  To weather the storm.  So I've done it as best as I could.  As long as I keep moving forward, its okay.   It's not a sprint, its a marathon.  We are so tired of it all, but we can't give up and pack it in.  No retreat.  Press on.  I'm not done yet-I still have over six weeks of radiation to weather. Years of tamoxifen and a lifetime of faith that the cancer will not come back. One foot in front of the other.  I'm learning how to accept the help that is offered, realizing that I can lean on other people to take that next step sometimes.  That has been hard for me.  Above all, I've learned my absolute dependence on God to get through each and every day.  I may not read chapters upon chapters of my Bible each day.  But I do have a constant relationship with the Lord that has sustained me and boosted me throughout this journey, carrying me when I could not carry on myself. 

It truly has been like the poem, "Footprints in the Sand"

"One night I dreamed I was walking along the beach with the Lord. Many scenes from my life flashed across the sky.

In each scene I noticed footprints in the sand. Sometimes there were two sets of footprints, other times there was one only.

This bothered me because I noticed that during the low periods of my life, when I was suffering from anguish, sorrow or defeat, I could see only one set of footprints, so I said to the Lord,“You promised me Lord, that if I followed you, you would walk with me always. But I have noticed that during the most trying periods of my life there has only been one set of footprints in the sand. Why, when I needed you most, have you not been there for me?” 

The Lord replied, “The years when you have seen only one set of footprints, my child, is when I carried you.”

Slacker mom

I'm feeling pretty bad tonight. Physically, yes. It's exactly what I was expecting.  My "down" day started to hit earlier this time.  But even more so emotionally.

Isabelle was in the San Marcos Holiday Parade today with her girl scout troop.  For the first time, I wasn't able to be there.  Not even to stand on the streets and watch her go by. I spent the afternoon in bed trying to rest, but knowing that I was letting her down.  So I laid there, zoning out.  Wishing I had the energy to get out there, but knowing I didn't. All in all, a pretty crappy way to spend the afternoon.

When she came home, she seemed okay at first.  I asked her to tell me all about it, and she did have a good time.  I apologized for not being able to be there.  All the other girls had at least one parent there.  She was the last one to be picked up.  She did cry a little bit.Which made me cry a lot.  We just sat there on the couch.  Hugging and crying. It was kind of hard, because at the same time, Jean-Marc was trying to get a piece of me too, and was climbing on lap, edging her out.

I hate not being able to be out there supporting my kids like I used to be.  I know that it is temporary, but that doesn't make it any easier today.  I know that as she grows older, she will come to understand that my absence today was not by choice.

But that doesn't make it any easier today.

Thank you to everyone

Just a quick note to pass along my thanks for all of the wonderful notes of encouragement and support over the past few months.  Comments to my blog, comments on facebook, cards, and letters...they all have been so uplifting and special. It helps so much, you don't even know.

I'm starting to feel the effects of the chemo today.  My taste buds are starting to go metallic.  My eyes are watering.  But what is the most difficult to handle is what it does to me mentally.  I have no patience and don't want to deal with things.  Unfortunately, being a wife and mom with 3 kids, I can't completely check out.  Eric kind of got upset at me this afternoon when he tried to give me a hug.  I know he was trying to be supportive and comforting.  But I just need my own space.  When I ended the hug quickly, he got kind of upset and went into a little mini-rant on his own about how I was spurning him.  Or something to that effect.  I was trying to get the lunch dishes cleaned up, help Olivier get started with a project for school that he is having trouble with all so I could then go upstairs and rest for a couple of hours.  I just stated loudly enough for everyone to hear, "We don't have the luxury of having more than one person pissy and hormonal.  It's MY turn right now!"  That pretty much ended that.  Everyone is okay now.

I did rest awhile today.  I finished my Vince Flynn book, "Memorial Day."  I finished today's installment of Angry Birds Seasons with 3 stars.  Then I found an album I recently bought on iTunes by a group called "Watershed Worship."  It's an a Capella group.  The title of the album is "I Know You Love Me."  The words were exactly what I needed to hear.  It really brought me right to a place of quiet before the Lord.  I prayed that He would get me through these next couple of days.  That he would renew my strength, that He would fill me with his Holy Spirit so I could demonstrate more of His love and patience, the fruits of the spirit. That he would bless my family and increase their faith as well as my own. I know the kids are upset, even if they don't express it to me.  Apparently, Isabelle had a slight melt down while at my parents' house last week.  There are feelings right under the surface that can bubble up without warning.  She keeps a lid on it around me, but sometimes she lets others in.  I'm glad that she has others that she can talk to.  I know that my parents and Eric are worried about recurrence just as much as I am.  Those words from Dr. P last week were honest, but tough to hear.  We all now are faced with putting the walk in our walk, after having just talked the talk.  It is REAL faith, not lip service, and its hard.  So the music today that reminded me of His love and what He has done for me was just what I needed to hear.

We continue to get ready for Christmas. Olivier, Jean-Marc and I went to Michael's this morning and got more Christmas stuff.  When Jean-Marc wakes up from his nap, we are all going to pile in the van and go down to the Christmas tree lot and get our tree.  I'm looking forward to the smell of Christmas tree in the house, even if I don't get the energy up to decorate for a few more days!

Thanks again for all of your prayers and support.  You are my co-warriors!

Chemo is DONE

Would be better with my eyes open!

Well, almost.  I still have to deal with the side effects from this last round.  At least this time, when I have my down days, I'll know that it is for the last time.  That will be good.  Every day I will gain strength that won't be taken away next time.  I won't have to plan on going back in and get poked and dripped into again.  Praise God for giving me the strength to get through the last 18 weeks!

I had Eric take a few pictures of me this morning to document my last day.  I realized I hadn't posted a baldy picture yet, either.  Since my hair should start coming back in about 6-7weeks, why not show the world what I've looked like underneath?  I bare it all in words, why not bare some more in photgraphs?

Pink and Plaid warrior ready for battle

I wore my pink "survivor" shirt that I got at the Charger game in October.  I like it because it says "SURVIVOR" on the back.  Regardless of my fears about recurrence, I want to think of myself as a survivor.   I also wore my pink and plaid scarf.  Lookout chemo suite...the pink and plaid warrior is on her way for the last time!

Everything went very smoothly.  As always, the IV placement was the worst part. But it was over quickly.  I spent the time mastering today's level of  "Angry Birds Seasons" and reading a Vince Flynn book on my Kindle.  

My mom, dad and brother Jared came by at the end of the morning and we went to lunch at Mimi's Cafe to celebrate the end of chemo. On the way out of Kaiser I picked up my first supply of Tamoxifen.  I'll be able to start around Christmastime.  Great present, eh?  A 3 month supply cost me $30 out of pocket, so that isn't too bad. I don't know if that will go up next year when I am back at zero for my deductible.   Speaking of insurance, I got my 2011 renewal from Kaiser and our premiums are only going up by $36 per month. I was afraid it would be much worse.

There isn't really much more to say right now.  Just pray that these drugs coursing through my body seek out and destroy the enemy.  No prisoners, just casualties!  Thank you all for your support!

Bring it on!

The nurse removes my IV and it's over!

Thoughts on my last chemo eve

Tomorrow marks a date on the calendar that I have looked forward to since August.  December 3rd.  My sixth and final round of chemotherapy.

I have mixed emotions about it.  Yes, I am thrilled to have it behind me. It will be a celebration, to be sure.  Pardon the crude expression, but chemo sucks.  It affects your body and mind, inside and out.  It affects every aspect of your life and your family's life.  Weekends and holidays lose meaning.  Dates, birthdays, anniversaries and events are only important as how it relates to chemo.  You are unable to participate in all of your kids' events like you used to.  Even if you feel okay, which I have been blessed to have been a surprising amount of time, you look like a sick person.  Bald, thin or no eyebrows or eyelashes. You get looks from friends and strangers alike when they don't think you can see them. You can see when people are shocked or taken aback just by seeing you. On some faces, you see the looks of pity.  Which sometimes makes you feel worse.  Not always, but sometimes.

On the other hand, there is a bizarre kind of security in being in chemotherapy.  You are doing something actively to fight the disease. It may be wiping you out, but you are fighting back.  With chemo over, the waiting begins.  Will the cancer come back? Was it enough chemo? Was the chemo effective on the cells?  Because I had surgery first, I have no real way of knowing for sure.  If I had chemo first, we would know if those drugs shrunk the tumor.  On the other hand, we got the known cancer out so I feel good in that decision of timing. Did we use the right drug combination?  It is a little like I felt in the beginning of this experience when we just didn't know what we were dealing with.  I feel a little like we are coming full circle. Is the cancer there?  We just don't know.

This is where I guess one must simply walk by faith and trust that whatever happens, is what God has in store for the ultimate good.

I had an appointment with Dr. P, the oncologist, today.  I asked him about where we go after treatment.  He wants to see me in four months, and then we will go to every six months.  Obviously, I can't have mammograms.  So how do we screen for the cancer coming back?   I wasn't very reassured by his answer.  Remember, this is a research type guy.  He's really smart and knows his stuff.  He may not have the best bedside manner, but we have developed a rapport over the past few months.  Even so, he doesn't sugar coat or spare any unnecessary words.  He said he does not like to do scans because they lead to a lot of false positives.  My gut would rather have a false positive than not catch cancer earlier.

The bottom line he said was that if the cancer comes back, its not going to be curable. Not those exact words, but he did use the words, "not curable."   Thud.   Punch me in the gut, why don't you, doc?  If it comes back, it will have moved to either an organ or the bones. It isn't the kind of thing that would kill me right away.  They have treatments and therapies to help you live with it for as long as possible. But he put my darkest fear into words and it was out there in the room.

In my case, he has observed that I am a health conscious person.  I exercise a lot and have good body awareness.  I can tell if there is "something wrong."  In some ways, its true.  On the other hand, I had no clue about having breast cancer until I felt the cancerous lymph node in May.  Breast cancer was so far off my radar screen.  Now it is smack dab in the middle of it.  So maybe that will be enough of a red flag to seek an exam.  He told me that I should keep in mind that we are throwing everything at this cancer that we can, so I can "put that in my back pocket."

I still don't feel that comfortable with the situation.  But I suppose every person who has gone through cancer therapy feels that way.  I can look on the bright side...I still have radiation to go through.  So there is more fight left to fight.  I'll be on tamoxifen for at least 2 years starting in late December/early January.  In 2 years, we'll test my estrogen levels to see if my ovaries have resumed making estrogen.  At my age (41), the menopause I'm experiencing may go away.  Lucky me, I'll get to do it again later on.  If I am post-menopausal, then they can move me to another class of drugs with a smaller dose and less side effects.  I'm grateful to have a type of cancer that is receptive to this hormonal therapy.  It's another security blanket.

There are other things I can do to prevent the cancer from coming back. Lifestyle things like keeping my weight down (another incentive), eating right, and limiting alcohol.  The more I learn about the health risks of being overweight, the more annoyed I am with myself that I let it go for so long. At least now I'm near my ideal weight.  After all of the treatment is over next spring, I'd like to drop at least another 10 pounds.  I would hate to have to lose the 50 pounds that I lost last year now. That was another way God prepared me for this trial.

Anyway, that is the jumbled mess of my thoughts tonight as I await my last infusion of taxotere and cytoxan. ("TC" in cancer treatment parlance.)   The bottom line is that while I am thankful for this phase of the journey to be over, I am reluctant to let this toxic lifeline go.

My prayer requests:

• That my final round of chemo go smoothly tomorrow. That I tolerate it well and that the drugs do the job they are supposed to do. 
• That I be able to put my fears aside and walk by faith.  I know that God already knows the number of my days. It doesn't do me any good to worry about it, and by worrying I'm not having faith.  Fear is the opposite of faith.  I want to live by faith, not fear.  Pray that I not "go there" in my mind. 
• For complete healing.  That there be no cancer cells in my body anywhere.