Status update...all clear

I had my 6 month oncology checkup today.  Every April and October I'm supposed to go and visit Dr. P. Last April, they called me to set it up. This time, I didn't get the scheduling call. I put it off and finally last week called to make the appointment. I'm not a big procrastinator. It just stresses me out.

It's really strange to go back there to the internal medicine department at Kaiser. It wouldn't be accurate to say that it "reminds" me that I had cancer, because every day the thoughts of "what if it comes back" invade my thoughts. It's worst in the middle of the night when I have moments of sleep that are "less deep" (for lack of a better term) than others.  During those times, I have to call on the name of Jesus in order to fight off the fear.  Talk about a spiritual battle! The strange thing is, that I'm really still asleep while I'm doing this. Weird.

I managed to get my 6 mile training walk in before my appointment. I parked my car in the Kaiser parking lot and walked from there.  Training for the 3 Day certainly poses some challenges for life. It takes a long time to walk, especially after I got used to running earlier in the year. Our mileage plan for this week is 44...including an 18 mile day and a 15 mile day. So squeezing in doctor's appointments around the kids' schedule and my training schedule can be tough.

Dr. P never changes. Knowing that he does triathalons, when he asked me "What's new?" I told him that I bought a road bike. (This is old news to my Facebook friends.) We had a discussion about my speedplay pedals and he assured me that EVERYONE falls from time to time.  I told him about the walk training. He asked me if I wore enough sunscreen. Probably not, I told him. It didn't help that I was a bit flushed from just having walked 6.6 miles!  I like to tell him about my race goals and let him know how much I am able to do. Like it will put another notch in the "healthy" side of my file.

Looking at my medical record, he saw that I'm coming up on my 2 years on Tamoxifen in December. Now the decision is....do we switch to another hormone therapy that is for post-menopausal women? My estrogen levels were "low" last April. He suggested that I get them checked again in December and then we would probably switch to Anastrozole. I assured him that I haven't had a period since September 2010. Silver lining? Maybe. Maybe not, though, because I've been having hot flashes ever since!  This new drug has a potential side effect of muscle soreness and osteoporosis. We'll see how it goes.  I'm going to go for it as soon as I can because Dr. P has told me in the past that it has better outcomes than Tamoxifen alone.

After that, he examined me. Listened to my lungs, heart, etc. Felt around to see if there were any lumps or bumps that shouldn't be there. For the first time, he did not ask me about reconstruction.

And then it was over.

For another 6 months.

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.  

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. 

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.

It's all in the genes...or is it?

Because I am "young" to be diagnosed with breast cancer, my surgeon referred me to genetic counseling to determine if I should be tested for the 2 known breast cancer genes, BRCA1 and BRCA2.

It was an interesting intersection of my interest in family history and my disease. Before the meeting with the counselor, they sent me a family history form to work on. They wanted to know my immediate family, my parent's family of origin, and any other relatives I know of who had cancer of any type. Another important fact was the age at which they were diagnosed. Mom and I did our best to spread the word out to the extended family. The only known cases of breast cancer is one of my dad's sisters and one of my grandfather's sisters (my dad's paternal aunt). There were other forms of cancer here and there, but not very much.

We had the meeting with the counselor on Wednesday, June 30th. It was a bit hard to find the place-they stuck the genetic counseling department outside the hospital in a dinky building attached to a strip mall in the shadow of Zion hospital. We were a bit pressed for time because we dropped the kids off in Escondido at my mom's house while we went. I cut the timing kind of close, although we were a few minutes early. Both Eric and I are early-birds. We'd rather be early than late. Just the thought of being late stresses us out.

We finally found the building and checked in. We had to wait for about 10 minutes. I was kind of tired for not having slept much the night before. That, on top of finding out that my surgery was still 3 weeks away kind of had me drained. So I let Eric play with my iPhone. He started looking up chemo drugs on the internet on it. The counselor came out and took us into her small office. She asked the question everyone asks, "How are you today?" I said what I always thing, but rarely say: "Well, other than the cancer, I feel great!" She was really nice about the whole thing. When I told her that I had to wait for 3 weeks for surgery, she was surprised. She also encouraged us to keep calling for an earlier date.

Right from the beginning, she said that because of my age, she would recommend the genetic testing if I wanted it. I knew going in that I did. Not so much for my own decision making-I already know I wanted both breasts removed. But more so for my female relatives. I learned during the course of the meeting that it also could impact my treatment. Read on.

First, we went through my family history. She made a chart as we went through the family. For each person she wanted to know if they had any medical issues. One interesting aside...I have a niece with Turner's Syndrome. She said that babies in utero with Turner's have a 90% mortality rate. But once they are born, their symptoms aren't as severe as many other genetic abnormalities. It's kind of like nature knows that there is an issue with the baby's reproduction and does all it can to naturally deal with it by having the baby die in utero. So my niece is a true warrior who beat the odds!

Only about 10% of breast cancer is genetically inherited. The rest is a result of exposure to the environment, and genes just replicating in an incorrect way over time. That usually takes about 60 years to develop into cancer, though. So my age alone was a red flag for the medicos.

One thing I learned is that these 2 genes also predispose you to ovarian cancer. So if I were to test positive, there would be a whole host of issues to think about. Many women have their ovaries taken out. The genes are not linked to uterine cancer. However, since my cancer is hormone receptive, it is recommended that I take Tamoxifen after all of my treatment for 5-10 years to prevent any re-ocurrence. That drug is linked to uterine cancer. In that case, a hysterectomy may be recommended. They can do both removal operations laproscopically now and pull the organs out through the vagina. Wild. At least it wouldn't be like have another cesarean, being sliced open again. Ugh.

For those who know me--especially who know me from my birth activism days with the International Cesarean Awareness Network (ICAN), having prophylactic surgery is a disconnect. I've avoided medical intervention most of my life, to the point of having 2 babies at home! It is hard for me to swallow too. I've already elected to remove what they believe now is a "healthy" breast. (That opinion may change after they examine it. I know other women whose "healthy" breast turned out to have cancer in it). But a wise woman who is on a similar path as me recently said something to the effect of, "birth is normal. Cancer is not." So I am learning to lean more on the medical professionals and their opinions. Breast cancer survival rates are around 90% I'm going to go with what has been proven to work, even though it will be hard.

Would I have a hysterectomy if I tested positive for BRCA1 and/or BRCA2? Perhaps. I learned last week that chemotherapy will most likely throw me into menopause. I'm so thankful that I'm not younger, that I have 3 wonderful kids. Younger women who still have childbearing ahead of them have to make these decisions in the face of that. But cancer is scary. You just want it out. You want to remove all chances of it coming back, anywhere. To the point of removing healthy organs that you no longer need? Perhaps.

Being found positive for one of the genes could affect my chemo treatment as well. They would probably be more aggressive with it. Along with the results of the pathology report after surgery, they need to tailor the chemo to my particular cancer. Knowing if I have one of the genes is another piece of the puzzle to factor into the chemo cocktail.

Anyway, I'm all set to do the genetic testing. I could have had my blood drawn yesterday, but we just didn't have time. We had to get back to North County so we could get Olivier to his karate class. He was testing for a higher belt for the first time. I want to keep the kids' activities as normal as possible this summer. He had been waiting for this test day for months, and I wasn't going to have him miss it if I could help it. I can drop in at the lab at Zion anytime I'm down there, and I know I'll be there at least once or twice in the next few weeks.

Thank you for your prayers and support. I pray that you all are able to see God working in all of this. He is teaching me things daily about relying on Him and not myself. I pray that my will would be conformed to His, even if it means waiting 3 weeks for surgery. I've got to trust Him. The other option is to freak out. I like the first option better.