Michelin girl

Just call me the Michelin girl. Not the green travel guides that are stacked neatly on my bookshelf, although I did schlep 3-4 of them with me over the Atlantic on my recent vacation.

It's the arm.  I'm not sure what exactly is causing it. Perhaps its a combination of several factors: the travel; the heat; probably gaining a couple pounds from the different diet during vacation.Whatever it is, my left arm is noticeably puffier. Last night, I was flossing my teeth and zoning at my image in the mirror. Not really thinking, just wanting to get into bed as soon as possible.  I'm still jet-lagged and had been up since 2 a.m. the night before.

Since both arms were bent with elbows facing the mirror, I was able to compare the two. The left was much rounder than the right on the inner part of the elbow. I could feel the puffieness when I bent my arm throughout the day. Kind of like having a swollen joint from a bee sting (without the pain.)

Sigh. I've been massaging daily and wrapping each night.  I even did it when we arrived home after nearly 24 hours in transit. 

I need to be a little more aggressive. Last night I did a really thorough manual drainage and concentrated extra time on the problematic part of the arm. I decided to attack it with a chip bag on the forearm and foam on the upper arm.  That isn't an easy maneuver-I need Eric to hold the bag and foam in place while I secure it with the bandaging. I finished wrapping around 9 p.m. and wore it until after my workout this morning at 10:30 a.m.  It was a little difficult to work out with the wrapped arm, but I remember my physical therapist telling me that the best thing I could do is work out in the bandaging.  After my shower, I did manual drainage again and put on my Juzo compression sleeve. Perhaps I should have re-wrapped. But it is very hot right now and the thought of doing my child-fetching errands this afternoon with 5 layers of bandaging on is not very appealing. Plus, some of the bandaging was wet with sweat. (It was a good workout!)

I have not yet measured the arm. I'll do that later when Eric gets home. It will be interesting to compare it to the measurements I took when the swelling started in France.

My prayer request is that this episode of swelling goes away. I need to have it under control before the 3-Day Walk in November. I would rather not be messing around with bandaging at that time. Its going to be exhausting enough just walking 60 miles in 3 days. I don't mind wearing a compression sleeve, but the bandaging is unwieldy and cumbersome. I'll do it if I have to-I'm not going to let lymphedema interfere with my plans!

Thank you for your support!

You just never know

We traveled back home from France yesterday. Paris to Dallas was 10 hours, then from Dallas to San Diego was another 2 1/2.  Needless to say, by the time we did the first leg of the trip, waited in an excruciatingly long line at immigration, went through secondary customs (thanks to the confit of duck that my mother in law gave us), went through security in Dallas and finally got on our airplane, we were pretty wiped out. We didn't have very good seats-we were all split up for one thing. Olivier was in row 17 by himself. He probably didn't mind that because it put some needed space between him and his 3 year old brother. Eric and Isabelle were in the very last row that did not recline. Jean-Marc and I were one row in front and across the isle. We were right next to the engines. At that point, it didn't really matter. Although I got to be the sole parent on "potty duty" with Jean-Marc.

Anyway, as the flight attendant served me a ginger ale, she saw my compression sleeve and gauntlet. She asked me if I had lymphedema in my arm, to which I sighed, "yes."  But it did raise a flag for me. Someone who knows what that is probably has some connection to breast cancer.  On my next foray to the bathroom with Jean-Marc, she was standing there at the back of the plane. As we exited, she asked me if I had had (past tense) breast cancer. To which I again sighed, "yes."

As it turned out, she also is a survivor. Bing, bing bing!  Immediate connection with a total stranger. Of course, we got to talking. As it turned out, we had a lot in common.  She was also 40 when diagnosed, although now she is 5 years out. She also had an almost 2 year old when diagnosed.  Her tumor was over 5 centimeters, but she only had 3 lymph nodes involved. Like me, she opted for a bilateral mastectomy.  We compared notes on chemo. She had adriamyicn as well as two other drugs that she didn't name. I'm assuming they were the same I had, since Adriamycin-Taxotere-Cytoxan is a pretty common combo.  She chose expanders for her reconstruction and said it really hurt a lot. Besides, her nipples are all misaligned and as she put it, "Playboy won't be calling me for any photo shoots."  For me, that was reassurance that my decision not to reconstruct is a good one for me.

We talked about our common fear of reccurence. Her cancer was not estrogen receptor positive, so she was not given tamoxifen. Her understanding is that her type of cancer has a higher recurrence rate.  Even at 5 years out, she is still thinking about it. I think we always will.  I told her what my oncologist said about recurrence:  "If it comes back, it isn't going to be curable."  She nodded and said quietly, "Yes. That would be Stage IV."

Despite my fatigue, it was really good to talk with her. Someone who really got it.  We share a bond that we would rather never have, I'm sure. This thought also struck me, though.  With breast cancer rates as high as they are. The chances of there being others that I share this bond with in a large group of people are very high. You just never know who that woman is. It might be the person standing right next to you, or serving you ginger ale on an airplane.

The thorn on the rose

I'm writing this post from France.  We are having a pretty good time so far, having been here for nearly a week now. Everyone is getting along, and even the in laws and I are getting along. Jean-Marc is charming the socks off of them, of course.

We've been pretty busy. Every day has some sort of activity or destination.  We've biked the gardens of Versailles, walked the streets of Paris, toured the battlefields of Verdun, and toured the Loire countryside. This week, Eric and I will take a few days to ourselves and go to Strasbourg. In between, there have been the typical French lunches with family and friends that take hours.

I'm trying to get my workouts in as much as I can, but it is really hard. Another difficult thing is all of the delicious food that is being presented to me by our French relatives. It is yummy, of course. But it is also very lacking in vegetables and whole grains. I was happy today to be given some fresh from the garden beets from Eric's uncle. I sauteed some of the greens with garlic and had that for dinner. I was really missing my greens.  Despite this, it has been a pretty good trip.

There is one thorn in this rose, however. Yesterday while we were in the Loire Valley celebrating my mother in law's 80th birthday, I noticed that my left forearm had a different texture to it. It didn't look huge, but it was "harder" than the other arm. There was some swelling that was noticeable to my eye. We were spending the night in a hotel and planning on coming back "home" today. After I noticed this I was preoccupied for the rest of the day and was anxious to get back to the hotel to do a good session of manual drainage and bandage for the night.

Once we got back, I discovered that in the chaos of packing and getting everyone out of the house early, my bandages were left back at the house. I kind of flipped out. All I could do was to massage and hope for the best. As I massaged, I did not feel any kind of tingling or movement. All I felt was the hardness of my arm.  It had been two days since I had any significant exercise. I was missing my vegetables and feeling like an overfed piggie.  I resolved to get up early the next morning and do some Jillian videos in our tiny room.  (I would have run, but was afraid I would get lost in the village we were in! Instead, I did level 2 and level 1 of the 30 day shred from my iPod!)

As I tried to sleep in the uncomfortable bed, I tried not to freak out. All I could do was to try and rest. I also planned to drink extra water the next day.  The lymphatic system drains into the bladder so the more you pee, the better you can drain.

We are back at Eric's parents house now and will measure my arm tonight before I massage again and bandage. I'll add some foam to the forearm and wear it longer tomorrow morning.  I think I'll also wear the compression sleeve most of the day as well. That is, when I'm not fully bandaged.

I'd appreciate your prayers that this swelling get under control.  I'm not going to let it ruin the trip, but it is a thorn on an otherwise pretty lovely rose.

Jean-Marc and I right before I noticed the swelling

August already??

Time flies when you are having fun, I guess. This summer is simply flying by.  To be sure, this summer has been so much better for our family than last summer. At this time last year, I was recovering from surgery, and preparing for chemotherapy.

Now I'm preparing for taking the whole family to France!  We used to go as a family more often, but as our family grew, it got expensive.  I know it sounds glamorous, and maybe some parts of it are. But we are visiting my in laws.  Eric's mom turns 80 years old in August, so we are going in part to celebrate that milestone. The last time I was in France was at Christmas when I was pregnant with Jean-Marc.

So much has changed for me in 3 1/2 years! I had a baby.  I lost 50 pounds. I've been through a double mastectomy, chemotherapy, and radiation. I have lymphedema. I'm paying MUCH more attention to what I eat and how much.  I'm training to walk 60 miles in 3 days. I'm probably addicted to exercise. I'm going to do as best as I can at keeping with my exercise program and making good choices about what goes into my body, at least as much as I am able to. I don't want to be an irritating guest who is overly picky and annoying, though. When in Rome.....

I am looking forward to a few days with Eric in Strasbourg. His company is headquartered there, so he has a couple of days to work.  That justifies them paying for his airfare. I'm going to go with him on the TGV and explore the city while he works. I should be able to log several walking miles that way!  We also will be shown the area by Eric's boss and his wife. It should be fun.  I also hope we can take the kids to visit the Verdun battlefield with the kids.  Eric's grandfather fought in that battle during World War 1.

I am a little concerned about the lymphedema issue. My hand and arm have been pretty good this summer. In fact, I've slacked off on massaging and bandaging a little bit. My arm is doing good, but 12+ hours at 33,000+ feet may have an impact. My plan is to wear my new compression garment on the flight and bring my bandaging supplies and wrap at night when I get there. I sure hope that is enough to prevent an episode of swelling. It would be miserable to have to bandage during the daytime!

I also want to be able to keep training for the 3-Day walk. I've been logging about 30 miles a week so far. The training schedule had an easier week last week, but I kept the mileage up. I figure my "easy" week will be one of the ones abroad. I've got a few Jillian DVD's on my iPhone that I can do. I'll do what I can. Not only do I want to keep exercising for all of the physical health reasons I do now, but it keeps me sane.  I'll need that after a few days at the in-laws! We get along okay, but its always hard away from home.  We'll be 7 people sharing 1 bathroom! Oy!

As you can imagine, there is a lot of logistical planning that goes into taking the whole crew on such a long trip. Not only that, but we get back less than 48 hours before the kids start school!  I will have 3 kids at 3 different schools. Olivier in middle school, Isabelle in the 5th grade at the Elementary school, and Jean-Marc will start preschool 3 days a week. Right now, I don't have a carpool arranged for the middle school. Adding that to the kids' extra-curricular activities, I'm gearing up to be "mom's taxi."  Needless to say, I've been pretty busy the last week or two getting the kids ready for school as well as getting us all ready for this trip.

So this trip for us signals the end of summer. Sigh. Can it already be over so soon?

My prayer requests:

• That we have a safe and smooth trip. We will be schleping suitcases, computers, roller bags, a big car seat and stroller. I'm NOT looking forward to the security screening!  Please pray that we get through it all safely. 
• That my arm not swell. Not only the travel, but if it is overly hot in Europe, I may be at risk. Did I mention that hardly anyone has air conditioning there?

My all and all

I love worship time at our church, Calvary Chapel of Escondido.  I've always enjoyed singing, even as a kid. I wasn't ever a soloist type of singer, but I could keep my own in a chorus.  But there is something even more special about being part of a chorus of  raised voices to the Lord.

On Sundays, the service usually starts out with a couple of songs, then we pause for announcements and a few minutes to greet the people sitting near you.  Yesterday, during the "meet and greet" a friend asked me if I was all over the lymphedema. I explained that it never really goes away, you just learn to live with it, recognize swelling, and treat it yourself. She made a comment about it being like the "stones of remembrance"  and we both turned to greet others. But the comment kind of stuck in my head for a few minutes.  At first I didn't get it.  In the Old Testament, the prophet Samuel used stones as a physical way to remind the children of Israel about God's faithfulness and goodness.It says in First Samuel 7:12 says that when God enabled the Israelites to defeat the Philistines, the Prophet Samuel “took a stone and … named it Ebenezer, saying, ‘Thus far has the Lord helped us.’”  Okay, that's all well and good for the ancient Israelites. But what does that have to do with me?

I started thinking about the other physical "stones" of remembrance that I have as a result of the past 13 months. The physical is the most obvious. My short and increasingly unruly curly hair regrowth.  Or the two huge scars on my chest, a smaller vertical one near my right armpit.

After announcements, there is a longer stretch of worship.  It starts out as just singing.  I can let it stay that way, just me singing words that are projected onto a screen.  It is easy to let the mind wander to other things and just go through the motions.  Or set up mental walls that prevent the Holy Spirit from really ministering to you.  Sometimes, it turns into something much more. Something that I can't even really describe in words.  This past Sunday, any mental walls or walls that I had built up around my heart were completely obliterated by the Holy Spirit.  

We were singing a song that was new to me, called "My All and All"  by Frank Hernandez & Sherry Saunders Powell

These are the words:

My All In All

You are my strength, O God

You are my help, O God

You are the One on Whom I call

You are my shield, O God

My life I yield, O God

For You will ever be my All in All

Simple.  

But as I sang it, a tear or two started to roll.  Now, that is not unusual for me during worship.  But as I started reflecting on the various "stones of remembrance" that I have (both physical and experientially), I just lost it.  God has been SO good to me through this journey.  During my scariest moments, He was there with me. He did not leave me forsaken and alone. 

Just a few examples:

I have such a vivid memory (a "stone," if you will), of the double biopsy I had. I wasn't expecting to be biopsied that morning. I just thought I'd go in for an ultrasound and be told it was just a cyst and dense tissue. After all, I had a "clear" mammogram the month before. Except this time, the doctor couldn't figure out what she was seeing on my left breast.  By God's timing, she just happened to have time that morning to biopsy both the breast and the lump under my arm. As I waited outside while they prepped the room, my Aunt Meg posted a verse on Facebook from John 16:33: In this world you will have much trouble, but have no fear, I have overcome the world. Perfect timing.  God's timing.  As I lay with a huge needle probing my flesh, I did not feel pain.  Instead, I remembered God's promise from Jeremiah 29:11: For I know the plans I have for you you. Plans for good and not for evil. Plans to give you a future and a hope.  A future and a hope. I was not alone.

When I was waiting to see my oncologist for the first time, I was playing around with an app on my iPhone that "randomly" spits out a verse. I set the spinner on the topic of "fear" and pushed the button. The verse "You will not die" popped up.  I can't remember exactly where that came from in Scripture, but it was a message given to me that day. 

These are just a few examples.  

As we repeated this simple and beautiful song a couple of times, I just had to stop singing. I couldn't anymore because I was literally sobbing. I couldn't help it.  It was such an amazing moment of God's love coming down and piercing my heart.  Showing me how good He is, even by allowing me to go through breast cancer.  How much He loves me, and making me feel it.  Palpably. Even though I haven't been as faithful to my daily devotions during this time, He did not leave me. He was there the whole time, whether I sought Him out or not. Waiting for me, giving me strength, helping me get through this ordeal. I didn't care if anyone saw me.  It was as if God and I were alone in His throne room and He was wrapping his arms around me, soothing me.  Even when I didn't realize I needed it, He did. Abba. Words don't even really do the moment justice. 

Wouldn't you know it, I didn't have a tissue and neglected to grab one as I entered the sanctuary. 

I can't say that I am happy to be someone who has had cancer.  I still have moments of sheer terror and a sinking feeling in my gut that it might come back.  Or I'll feel a pain in my body somewhere...oh no...is "it" back having moved to the liver or bones?  I think most cancer survivors have those thoughts and I'm no exception. 

But I can be joyful in the situation because the Lord is my all and all.

The other side

A year ago tonight, I was preparing myself in all sorts of ways for my bilateral mastectomy surgery.  I remember shortly after my diagnosis a friend from church telling me something. Her sister had been diagnosed almost exactly a year earlier than me.  She said that, "things look a lot better a year later." She was so right.

I just went and re-read the posts to remind myself of all of the details. Strange how some things fade from memory.  Or maybe it's just chemo-brain in action?

July 22, 2010

July 17, 2011-Nearly a year later

What struck me from reading my pre-operative posts is how uncertain I was about things. Understandably so.  Everything I did with the feeling that it was a "last" time for doing it. My "last" workout at the gym.  My "last" trip to the beach.  My "last" time cuddiling with Jean-Marc in the morning.  It was a scary time.  I'm a big believer in preparing for the worst, and hoping for the best. I was mentally prepared for weeks of being bedridden and in pain.  I had not even considered chemo and radiation at that point. It was all about the harsh and brutal reality of having body parts removed. Ugh.

I don't do "sick" very well.  And by God's grace, I didn't have to.  In fact, I probably pushed it a bit too much to get back on my feet.  In the early days, I needed help with the drains and such.  It was also difficult to face myself in the mirror for the first time.  I'll confess that sometimes, I still start at my scarred reflection.

For the most part, I can say that those things that I was afraid that I would not be able to do again, I have done. This is not a brag list-it is a praise report and testimony to the faithfulness, mercy and grace of God:

• Cuddling/holding Jean-Marc?  Check! He's quite the love bug, and it's wonderful. 
• Running?  Check!  Ran a 10k in under an hour earlier this month. Less than a year out of surgery, less than 5 months after the end of radiation treatment.  
• Jillian circuits workouts?  Check!  I'm back to my level 3 Jillian circuit workouts.  I've definitely lost some of my upper body strength, particularly on the left shoulder and pectoral area. There is nerve damage there where things were cut. I'm permanently numb on my left tricep and across my chest where the scars are.  BUT-I can do push ups, just not as many.  I keep at it, and am able to do a little more each time.  My body will never be the same, but it is strong nonetheless. 
• The beach? Check!  I just went yesterday with the kids, my sister in law, niece, nephews and mom. I wore a bikini with my foobies in it.  

There have been some unexpected things as well. First on the list would be my lymphedema. Not all breast cancer patients get it. I'm one of the lucky ones.  But I am so thankful that Kaiser was very proactive in educating me on the signs of the disease, and even had me go see a physical therapist before the fact.  That way, when I did get it, I knew right away what to do and was able to learn to control it early. 

My friend was right. Things do look and feel a lot better a year later. Things will never be the same, to be sure. My family and I have been on a journey that has opened our eyes and changed us all, in many ways for the better. It has made us stronger.  Looking back and seeing how God has sustained me has increased my faith tremendously.  I thank you all for your support and prayer over the past year. It has been a blessing.

Life as I know it

I've been dealing with something over the past several days that I realized today illustrates how life is with the incurable and chronic condition of lymphedema.

Fortunately for me, right now it is under control.  But because I have had flare ups in the past, I continue to keep a very close eye on the size of my hand and arm.  I do manual lymphatic drainage most nights, sleep in 5 layers of bandages around my arm, and wear a compression sleeve and gauntlet when I work out.  I also measure my hand and arm at 5 c.m. intervals from time to time to make sure there isn't any swelling that is creeping up on me.

I have to be very careful about trauma to the left arm and hand. Anything could trigger swelling: sunburn; insect bite; cut; high altitude; heat; and burns. You don't realize how much your lymphatic system works all the time to heal your body of the little insults that attack it daily.

Anyway, it was the latter that had the potential to get me recently.  I was in the kitchen cooking up a squash casserole. I wasn't very careful when I was sliding it into the oven and ended up burning my left hand.  I put it under some water right away and treated it with aloe vera. The burn is about 1 inch long.  It didn't really bother me that much at the time-I was busy trying to get dinner on the table.

I realized I could have a problem started when I unwrapped my arm the next morning.  The first layer of bandaging stuck a bit to the scab and pulled it off a little. That hurt, but I told myself to be more careful next time.  After my workout that day, the wound had oozed onto the gauntlet I wear on my hand. Gross, but its washable.  I decided to start wearing a band-aid in between the wound and the gauntlet.

During the day, the wound would look like it was getting better. But after a night under the bandages and band aid, it would be all moist and oozy again. This had been going on for nearly a week.

Two days ago, I had Eric help me measure my arm to see if there was any swelling.  One measurement (10 c.m. from the wrist) was borderline, but not that far different from the last time we had measured it. So it didn't seem like the burn was triggering any swelling. Thank you, Jesus!

My latest approach is to just go bare for a few days until it is healed up.  Last night, I didn't wrap it in the bandage.  I'll confess that I was really tired last night and didn't even do my manual drainage before turning out the lights!  This morning, I went for a training walk and didn't wear the compression sleeve. About half way through, I bent my arm up to keep my hand above my heart and reduce any walking-related swelling.

The bottom line is that I think that the wound is now finally starting to heal.  Keeping it wrapped up was like taking one step forward and two steps backward.  Hopefully a couple days of this will heal the wound without letting the arm swell.  I'll keep any eye on it and definitely will be doing the manual massage tonight.

I realized on my walk that this situation is now a part of my life.  It isn't going away like the cancer went away.  It is a balancing act.  Stay active and live life.  But don't injure the arm.  If I do, then I have to try different approaches (or a combination of them), to keep the arm from swelling. It's not life threatening for me, but it does add a slight burden to day to day living.

I just thought I'd share this aspect of live post-breast cancer as I know it. As always, I appreciate your prayers that this lymphedema stay under control. This is my first summer season with it, and with our upcoming travel and the heat, it could easily swell up.