I guess this is why it's called "chronic."

Well, my lymphedema has decided to rear its ugly head. Sigh.  I don't really know what triggered it. Perhaps it was me riding my bike more last week?  (I took a week off of running to let my right shin get rid of some discomfort. I rode my bike over 84 miles last week.) Perhaps I jammed my hand during my duathalon? Perhaps the weather? Who knows. It is what it is.

It has been quite awhile since I've had a flare up. Sure, my arm and hand would swell a bi† while I was training and doing the 3 Day. Walking 6+ hours a day will do that to anyone. But aside from my ini†ial flare up back in December 2010, this is the worst it has ever been.

I think I've been kind of slowly swelling in my arm. Nothing major, and I just decided to live with my left arm being a bit bigger than my right. But then about a week ago, my hand started puffing up. I started back up with the manual drainage massage at night and bandaging. I didn't see a whole lot of change, but kept it up. Last Thursday night, I was particularly tired. Rather than bandaging, I used my Juxta-Fit sleeve and glove. The next morning, my hand was like someone had blown air into a surgical glove. Not pretty.

Last night, I decided to give it a rest overnight and see what happened. I dreamed that my arm blew up like a balloon. When I woke up, it didn't seem too bad. I went on a 10k run and was feeling good, not focused on my arm at all. (I always wear compression sleeves when I work out, by the way).

My in laws are visiting from France right now. I thought it would be fun to bring my mother in law with me when I picked Jean-Marc up from preschool today. I figured she would enjoy seeing a slice of his little life. I was right. He enjoyed showing her around his school and introducing her to his teachers. They took a picture of his teacher and us in his classroom, it was really sweet.

A few hours later, I saw the picture. My left arm is front and center and my lower arm/hand especially looks foreign to me. Oh my gosh.. that's how it looks? Really. Look at my wrist/hand. Thankfully, the worst part is cut off in the photo.

I need to do something. Now.

I had Eric help me measure my arm. I have always kept track of my measurements on a spreadsheet. When I opened it, the last time we measured was September 2nd.  I started the spreadsheet back in early 2011. We measure at various points on my hand and arm: knuckles/palm and wrist. Then from the wrist, every 5 centimeters up my arm. For each measurement, I have an "ideal" that my physical therapist and I set way back when. The bottom line was that I am up significantly in all but one measurement....my hand.

	goals	best	7/11/2011	09/02/12	03/25/13
Knuckles	under 20.0	19.2	19.8	19.7	19.2
Wrist	under 16.0	15.8	15.6	16.1	16.5
5 c.m.	under 17.5	16.5	17.2	17.7	18.8
10 c.m.	under 21.5	21.3	21.6	23.2	23.5
15 c.m.	under 25.0	24.5	24.5	25.8	28
20 c.m.	under 26.0	25.5	25.2	25.5	27.3
25 c.m.	under 26.6	26	26.2	27.2	28
30 c.m.	under 28.5	27.9	28	29	29.4
35 c.m.	under 30.0	29.7	29.8	31.2	31

I went upstairs at 5 p.m. and did massage and wrapped my arm up. I was a little disappointed not to feel the tell-tale "tingle" that the massage is actually moving the lymphatic fluid. But whatever. I'm going to either wear the bandaging or compression sleeves for a few days and then re-measure to see if its helping. If not, I guess I'll give the physical therapist a call.

So your prayers would be appreciated. Frankly, it sucks to have to wear bandaging when I'm not sleeping. Poor me, pity party. Sorry. Lymphedema is something that is part of my life. I've had a stretch of several months without being symptomatic, but it looks like that is over. At least for now. I guess that is why its called a "chronic" condition.

Complacent no more!

I'm happy to report my lymphedema seems to have gotten under control. All it took was taking the time to take care of it: doing the massage nightly; wrapping; and staying bandaged longer. I also started using "chip bags"as part of my bandaging on my hand and forearm.  I can once again wear my wedding rings without worrying that I will be unable to get them off!

It was a wake up call for me, though. I had spent most of the summer not massaging, and only wrapping a fraction of the time. Even with our trip to France, I was spared swelling. So I began to take it for granted. This latest episode has shaken me out of my complacent place. Especially now as my mileage for the 3 Day begins to increase. This week was a "rest' week with only 20 miles, but next week I'm in for 30! Keeping my arm bandaged for some of these long walks has definitely helped, although it has been difficult with the hot weather.

I was not so happy to see that I've crept up a few pounds on the scale today. Yikes. Another place of complacency that is being shaken. Considering all of my exercise, I haven't been careful about what I'm putting in my mouth, and the scale doesn't hide it! So I'm back to counting calories. I'll admit...the past couple weeks, I've indulged in wine, dessert, and too many snacks. (Like the huge bag of yogurt raisins I bought at Costco and pretty much finished off myself in a week!)  I've gone past my "no go" number by a pound and its time to get serious again. Its ridiculous considering the amount of exercise I do!  If I'm careful about what I put in, I should be feeling good again in a few weeks. (Just in time for my 25th high school reunion in October!)

I still am dealing with bursitis in my hip, but that I'm told takes a very long time to go away. I can't exactly stop using it. So I'm icing it, taking anti-inflammatories, and not sleeping on my left side. On the good side, my left foot/heel seems to be dealing with getting back into walking and running.  I've added foot stretches and rolling my feet on a golf ball as part of my cool down.  I guess this is another area where I am no longer complacent!

Status update

It has been a busy few weeks. The kids started school again 2 weeks ago. Isabelle and Jean-Marc are each doing swimming 2 times a week, so I find myself on the road being the taxi again.

My plantar facitis seems to have abated, thank God. However, when it first flared up in July, I compensated by walking on the outer part of my left foot, which caused my hip to have problems. I saw my chiropractor last week to make sure that it wasn't cancer. (I know, I know.) But Dr. P's way of monitoring in between check ups is to tell me, "If you have a pain that doesn't go away, come see me." This hip pain is officially bursitis.  My chiropractor nailed it right off by comparing my right and left side.  I also got a really good adjustment in the process. He did tell me that my foot felt much better than the last time I was in. Yay! Anyway,  Dr. Google tells me the remedies for bursitis are ice, anti-inflammatories, and rest. Hm.  Okay, well 2 out of 3 should help, right? If it got really bad, I could get a cortisone shot in the hip. I don't know if I would ever go there, though. I had one once...and it is a very traumatic memory. 

The thing is, I don't want to rest. I love to exercise. Plus, I officially started my 3 Day training a few weeks ago. While its not as rewarding as running (burning half the calories in twice the time), I do know that it is important if I want to be able to walk the entire 60 miles. So I've been walking a lot more the past few weeks. Rest really isn't an option at this point.  I'm in a groove! Here is my Garmin calendar to prove it for the month of August. 

With my foot problems, I've gotten into other forms of exercise more. I took 3 weeks off of any impact and for cardio did stationary bike riding and swimming. Now I'm all inspired to tackle a triathalon at some point. Yesterday, I swam 2,300 yards in an hour. 1,100 of them were freestyle, non-stop. This morning, a friend from church loaned me a bike that I can try out. I'm excited to give it a try. Cycling is a whole new world for me.  I half-jokingly told my parents this morning...I need a cycling outfit! Maybe something in pink? :-)

Anyway, one problematic issue that seems to have cropped up is my lymphedema. I had a small pain on my left hand for a few days. I'm not sure where it came from, but it definitely felt tender, like a bruise. It also has been very hot, and I have been walking, which tends to make me swell. I noticed last week my hand was puffy, so I started being more diligent about wearing bandages or my custom Juxta-Fit sleeve at night. I even did the manual drainage massage a few nights. But when I do, I'm not getting that "tingly" feeling that tells me that the lymph is moving. So far, it does not seem to have helped. I wore my nighttime wrapping/bandaging the last 2 mornings walking to no avail. Today, I'm wearing my compression sleeve and glove during the day. For the past year or so, I've only worn it while exercising. But I can tell through the glove (even more coverage/compression than the gauntlet) that my hand is puffy. I'm thinking that maybe I need to go and see my physical therapist to get "unstuck" from where I am. She's good at the drainage and can probably get it moving for me. It's not life threatening, but it is a bummer to look down and see my hand all puffy.  Eric and I measured my hand and arm today for the first time in about a year, and I measured a centimeter up at most points on my arm. Sigh. So I guess I need to get more aggressive with my bandaging. Great.

It's a pain, but its okay. I can deal with it. That's life, and it could be so much worse. I'm grateful that at least I know to be on guard for this and can spot it as it happens. I've been given the tools to deal with it too, which is something that many women do not have. In any event, any prayers that you all could lift for me on this would be greatly appreciated. 

Being grateful

One song I enjoy running to is Kelly Clarkson's "What Doesn't Kill You Makes You Stronger."  I've always believed that to be true in life. Each situation we face makes us adapt, change and grow to deal with and, hopefully, overcome it.

I spent several years working with an birth education and advocacy group, The International Cesarean Awareness Network (ICAN). My involvement grew out of my own bad experience with Olivier's cesearan birth in 1999. As I became more aware of the physiological and political issues surrounding the birth industry, I was able to go on to have two amazing home births with Isabelle and Jean-Marc. I got involved in ICAN, a group that I found much support and information from during my subsequent pregnancies. I like to think that I helped other women avoid some of the same mistakes that I made the first time around. My cesarean experience definitely made me stronger, but it took me a long time to get to the point of saying that I was grateful for that experience. But now, I can honestly say that I am grateful for my cesarean and for the person it forced me to become.

A new friend, (who found me through this blog), mentioned an interview with "Soul Surfer" Bethany Hamilton. Bethany was asked if she could do her life over, would she have not gone surfing that day or gotten out of the water before the shark came?  And she said, "No", because she has been able to reach so many more people to tell them about her faith and God's love than she ever would have if she'd remained a normal surfer girl.

That got me to thinking...will I ever be able to say that I am grateful for my cancer? Maybe not grateful, but would I ever wish that it didn't happen to me if I could have it all to do over?

Honestly, I don't know right now. Sometimes I look back on what I went through and it doesn't even seem real. Did that really happen to me?  It doesn't take long before I have a glance in the mirror and see my scarred body to confirm that, yes, it did.

If it weren't for the lingering specter of recurrence, I probably could get to the point of being grateful someday. Even with the lymphedema that will always be an issue in my life, I could probably get to that point.  But the thought of the cancer coming back at any time really plays games with your head, because its never really over.

That being said, I can think of some things that I appreciate having gone through cancer and treatment that I would not have necessarily experienced if I did not have the experience.  First of all, I have been able to experience the love, care and keeping of God in a way I never had before. It was experiential at times. It was palpable. I think of my biopsy or my surgery, when I could actually feel the presence of the Lord with me, keeping me, whispering scripture into my mind to bring me peace and calm.

I learned through experience that God's promises in the Bible are true. Things like, "I will not leave you or forsake you." (Hebrews 13:5-6) Or the promise from Joshua 1:9 that I wore on a necklace to every chemotherapy appointment: "Be strong and courageous, do not be afraid, do not be discouraged, for the Lord your God is with you wherever you go." Even simple things like being able to sleep at night because "He gives to His beloved sleep." (Psalm 127:2)  I KNOW these things are true because He did them for me. Based on that, I can rest assured that the rest of the promises in the  Bible are true as well.  (Which really puts one in a place of peace during these crazy times.)  Even if the cancer comes back and is what ultimately makes this body die, I know based on the promises in His Word where I'll be, because "to be absent from the body is to be present with the Lord." (2 Corinthians 5:8)

Another thing I appreciate is the fellowship of other breast cancer survivors. What an amazing bunch of people they are!  Most of them not only have or are going through treatment, but they all try to help others in some way. Many do help through participating in walks or events and raising money for cancer charities. Others have informative blogs, or give back by volunteering to help run support groups and working one on one with women as they go through treatment.  We don't all see eye to eye on all issues related to breast cancer, treatment, pink ribbons, etc. But we all respect each other's experience and I always feel a genuine warmth from all of them.

Having had breast cancer has certainly put the women in my family on alert, as well as many of my friends and acquaintances. If it could happen to me at 40, it can happen to anyone.  Hopefully this heightened awareness will lead every woman to check her breasts regularly, know what they feel like, know what is normal so if there are any changes, she can alert her care providers immediately. I believe that is even more important than mammograms. (Remember...I had a "clean" mammogram a month before I was diagnosed with Stage 3 cancer!)

While I will never reach the celebrity of Bethany Hamilton, I hope that my experience has reached out and helped others. I hope that people can see evidence of God's love through my experience and be strengthened in their own faith.

So while I am not "grateful" that I had cancer, I am beginning to see how God has used it for good purposes.  I know that He works all things together for the good (Romans 28:8).  I pray that this list of things that I have come to appreciate grows as I reflect on the past 25 months and move forward in my "post-cancer" life.

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!

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

Down to the wire

Summer is on its way! The weather today in San Diego was absolutely gorgeous.  The kids have less than 30 days of school left, and summer plans are in the making. One thing I want to do this summer is take a mommy and me swim class with Jean-Marc to get him used to the water. To do that, I need to figure out my bathing suit situation.

I've loved Land's End clothing for some time. I've always liked the casual look they  have. More recently, I've appreciated the brand because they consider a "small" in the size 6-8 range, so that works for me. There is something really encouraging about knowing I'm putting size small on! Maybe it was because it was a pair of Land's End shorts in size 14 that were too tight two years ago that pushed me over the edge to say "enough is enough!"

Anyway, I was pleased to find out from a friend that many of their swimsuits come with mastectomy pockets on the top.  Did you know that my foobies are waterproof?  Yep, I can get them wet in the pool or the ocean and all I need to do is wash them in the shower afterwards.  As long as there is a little pocket in the suit, I can slip my foobies in and no one will be the wiser. This was great news, since I had purchased 2 new swimsuits last spring before my diagnosis. Because they allow you to mix and match, if I could find a top that matched some of the bottoms I already had, I wouldn't have to buy an entire new suit. As luck would have it, they did!  I went ahead and ordered the top only in a cute navy with white polka dot that matches some bottoms I have. I also got a whole new suit that is more athletic looking in pink. (I couldn't just get ONE item!)

The suits came today. I love getting stuff in the mail that I've ordered! Especially fun stuff like clothes. The pink suit looks pretty good. I was a teeny bit disappointed that it doesn't look like I could just wear the top without the foobies in it because it has a molded cup. But it will look okay anyway.  I would like to have the option of just going without "breasts" altogether, but I'll have to find another suit that doesn't have a molded cup.  That will be my "flat" suit.

Anyway, the polka dot top looks cute, and matches the bottoms perfectly.  The only problem is that it has an underwire. I was told to stay away from underwires because it impedes the flow of lymphatic fluid.  So there is the chance that it may not work with my lymphedema. I'm not sure what I'm going to do about it. I haven't even tried it on, so maybe it won't fit too tightly. We'll see. If it fits too tight, I'll have to return it. If it isn't too tight, I may keep it and see what happens. Any of you survivors out there have any experience with underwires?

Regardless of the suit, I'm really looking forward to the summer time.  This summer is going to be SO MUCH BETTER than last summer! Last summer was such a detour for us. We went from all of these plans to be active and enjoy the time together to the drama of surgery, recovery, and chemotherapy. It was no fun for anyone. This summer I'll be training for the 3 Day in November, going to France on a family vacation, taking the kids to the beach, celebrating birthdays, and making the most out of every day that God has given me. I can't wait!

Reality check

Miners take a canary down into the mine with them for safety.  If the canary dies, they know that they have a very limited amount of time to get out of the mine or they will suffer the same fate as the bird.  It's an early warning system.

I've got an early warning system of my own.  It's my left arm and hand.  I measure it every week to keep track of my lymphedema.

Yesterday, my measurements were up in several places.  In fact, on the upper part of my arm, it was over the number my physical therapist gave me as a goal number to stay under.  Darn!

As they told Maverick in the 1980's classic movie, "Top Gun," "You're writing checks your body can't cash!"  Maybe I am as well. I think its time to readjust my fitness regimen as well as my lymphedema management.

I had scaled back the manual draining to once a day. I was bandaging each night, but only wearing it for about 8-9 hours at most. I also was not wearing my compression sleeve all of the time during the day. I had definitely taken a step back just to see what would happen.  At the same time, I upped my activity level.  Particularly regarding upper body exercises with weights. I was using 3 pound weights, but doing the "Ripped in 30" workout every day.  The second level of the workout had a LOT of exercises in plank/pushup position. So even the cardio intervals were hitting my arms, shoulders and chest with strength training.  I don't have sore muscles in my arms, but I suspect I created a perfect storm which allowed my arm to swell a little bit.

It's not a huge deal. Luckily, I measure weekly so I was able to catch it early before it got out of control.  To address the situation, I'm back to twice a day massage, bandaging for longer, and wearing the compression sleeve more during the day. I also decided not to do the Jillian DVD every day like I had originally planned on doing. I can still workout, just not so hard on the upper body. Slow progression is going to be key, I think.  So maybe it will take me 60 or 90 days to get "ripped" instead of 30. It's frustrating, because I could have done it a year ago. But a lot has changed, and I need to meet my body where it is at now.

I'm still planning on the 5k on Sunday.  Olivier is going to run a 1 mile race in the "Junior Carlsbad" tomorrow. It should be a lot of fun for us both. I was looking around a bit online to see what people's times were for a 5k.  Some were talking about 20 minute times. Seriously?  I haven't even broken 30 minutes yet.  Even at that, I thought I was going to die! So now I'm a little worried about coming in last like a snail. Not that I'm competing against other people. I just don't want to embarrass myself! Yikes.

Anyway, please pray that my swelling is able to get under control. I wouldn't mind prayers for lots of energy and endurance on Sunday morning at about 8 a.m. Pacific time as well.

Lymphedema tracking

I'm still being vigilant about tracking the measurements of my arm and hand. I haven't seen my physical therapist for 2 weeks. My last day with her was the last day of radiation. At that time, she cautioned me to keep bandaging, massaging and wearing my compression sleeve while I was healing from radiation. She suggested a follow up appointment in a month.

I've been on my own for a few weeks. I knew what my measurements were on February 17th, my last day of radiation. I also knew what my "best" measurements were since I had been since my lymphedema was triggered. I came home and made a spreadsheet. Every Thursday, Eric helps me measure my hand, wrist, and arm at 5 centimeter intervals. I record them on the spreadsheet and then compare where I am, and where I should be.

I'm thrilled today because all of my measurements were where they should be. In fact, at six points, I beat my "best" measurement! Thank you Jesus!

What am I doing to keep it in control? I've been bandaging every night and wearing the finger to armpit bandages for at least 9 hours every 24 hour period. Frankly, that is getting old. It takes me at least 30 minutes every night to deal with my arm, between the massage and bandaging. I do 2 sessions of manual lymphatic drainage. I've gotten in tune with my body to the point where I can feel the lymph moving in my hand and arm when I do the massage. I also wear my compression sleeve and gauntlet for most of the day, and always wear it while exercising.

Today is a sunny day. I'm wearing a tank top, so I'm going to leave the compression off for the afternoon when I go pick up Isabelle from school. Bring on the Vitamin D!

To be honest, I'm afraid to stop bandaging at night. I would hate to wake up and be swollen up. But with measurements like this, I may be able to ease off on the compression garments during the day.  We'll see. I keep an eye on it and if it gets worse, I'm back in compression. That's my life now.

I'm going to celebrate this afternoon by getting my first pedicure in months. With chemo, I was advised not to get pedicures because of the risk of infection.  Plus, I lost a toenail from the taxotere. It has grown back a little bit, so I'm not that embarrassed by it anymore. I'm going to get the full-on European spa pedicure with all the bells an whistles!  Yay!

The last phase has arrived

Today as I was going into the radiation room, the tech reminded me that today was the last day of this kind of treatment. I think he said "protons" and that tomorrow we would start with "electrons." Or maybe it was the reverse. I have not taken the time to really learn about what they are doing to me. At some point, you've got to just trust that they know what they are doing, I suppose. He said that the next 5 treatments would be much faster than what I have been doing. Faster? It depends on your perspective. I thought the radiation treatments had been going pretty fast. It certainly beats 3 hours in the chemotherapy suite!

After the treatment, I got to see the doctor. Last week, he was a little impersonal I thought. This week was a bit different. At least he smiled and said hi as I came in the office. He took a look at my burns and said that it didn't actually look that bad. It certainly wasn't enough for him to give me a break. A break? No way, mister! The light at the end of the tunnel burns brighter each day. A break is the last think I want! He said that the last treatments would not be hitting that particularly bad patch under my arm. By the way, he said it was bad there because radiation does not like folds in the skin.

The blister under my arm has gotten bigger. It may have even popped, I'm not sure. After my shower today, it looked a little flat. You can't really see it in this picture, but its on the darkest part of the burn. The Mepliex pads are amazing. I am able to function normally with one on.  Even working out is doable. I took one off so Eric could take a picture, and it really bothered me. I'm going to get a fresh one tomorrow, because the one I have now is not going to last the weekend.

The very bright spot was my physical therapy appointment. We measured my arm and it didn't get bigger.  She thought I had definitely gotten over the allergic reaction flare up. I asked her to check how I measured back in September, before I actually had the lymphedema triggered. In many spots, I was significantly smaller.  ("Significant" = a change of .5 c.m. or more)  Any measurements that were larger were not significant.  Praise the Lord!  I'm not "cured" of lymphedema, it will be something I have to keep an eye on and treat accordingly. But it looks like I have learned how to live with it, and the radiation has not made me swell. Maybe it did swell, but I'm spending a solid hour working on my arm every day, and any daily swelling I've been able to take care of.

Week two in the can

I'm nearly 1/3 of the way done with radiation now.  Not quite, but almost. Today was my ninth treatment out of 33. Now I get 2 days off.  No Martin Luther King holiday for me.  That is just as well.  I want to get this finished, and a day off will just prolong the finish line.

So far, I'm doing pretty good. Compared to chemo, well, there really is no comparison. I'm still recovering from the physical effects of chemo, most notably in my finger and toe nails. They are still discolored and prone to lifting.  I've started wearing polish on my nails to cover it up. That makes me feel better about them, and they look nice too.  As for the radiation, I have not had any abnormal fatigue.  My skin has not yet shown signs of burning. I'm not expecting that to remain, however. The radiation oncologist said it usually shows up suddenly during week three. Lovely. Something to look forward to.  I'm doing what I can to keep my skin healthy now. As I'm in the dressing room right after treatment, I use an aloe based lotion. I don't need to warm the lotion in my hand before I put it on to avoid the cold shock...I'm numb in that area from the surgery! What a time saver! Later in the day, I apply a calendula lotion. I love this one, because its the same lotion (Weleda) that I used on my babies.  The smell takes me back to those early days when they were just days old and I would use the cream to do infant massage on them.  At night, I slather on the Aquafor right before bed.  I'm hopeful that this will help keep the burns manageable. 

The radiation office is a busy place.  I generally see the same patients there every day.  We don't talk to each other. At most, we give each other a sympathetic nod. I've taken to trying to guess what kind of cancer they might have. I'm the only bald one that I've seen so far.  At my appointment time, all the other patients are men.  When they come out of the radiation room fully clothed, I figure maybe a throat type of cancer. I have no idea what types of cancers are treatable with radiation. But it is something to pass the time.  Yesterday I was there early and the guy in front of me was in a dressing gown without his pants on. Yikes.  That can't be good. I heard him laughing with the techs as he went in, which was nice to hear.  Cancer sucks, so its good to try and laugh where and when you can. 

More problematic is my lymphedema. I went into the physical therapists yesterday and there was an increase of .5 cm on my lower arm (5 and 10 cms from my wrist).  The other spots we measure were all within the margin of "error" of my baseline measurements taken before radiation started.   My PT suggested I wear the bandages for a bit longer each day to address the swelling.  To the naked eye, you can't really tell when I hold up my arms.  But the measurements do not lie, and she re-checked them twice.  We don't want to let them creep up each week and then at the end of radiation have 2 centimeters to deal with. 

What a bandaged arm (not mine) looks like

I continue to get in two good sessions of manual drainage each day.  In total, this takes at least 45 minutes, sometimes 60 or more if I really work on it.  Last night, I bandaged and used some foam on my lower arm. I also kept the bandages on until about 9:30 a.m. today.  Usually I take it off when I get up at 6 a.m.  I'll experiment with wearing it longer this next week and we'll see what kind of effect it has on next week's measurements.  I don't mind wearing the bandages at night-I'm sleeping anyway. But they are bulky and a pain during the day when I need to get things done. My hand and fingers are wrapped (unlike this photo, where the fingers are not wrapped). I'm not supposed to get the bandages wet.  How do you cook and clean up after 5 people that way?  It's not very easy.  If I have to go that far, I will.  During the times I'm not in bandages, I wear compression garments. This is an area where prayer is needed.  Radiation really does a number on your lymph nodes, even if they are healthy.  To already have an impaired system that is struggling to keep up makes it all the more difficult. I am very thankful that my PT has taught me techniques to manage it.  I feel like I am able to control it as best I can.  Of course, the other thing I've learned throughout this cancer journey is that I have absolutely NO control.  

I'm very thankful to my mom for everything she has done for me throughout this time.  Well, for the last 41 years too! Since my diagnosis, she has been amazing. During this radiation phase, she takes time each day to meet Jean-Marc and I at the radiation office and she hangs out with him while I'm in getting treatment. They sit in the van and read books together. Today I came out and they were reading a story about the Old Lady Who Swallowed a Fly. Jean-Marc looks forward to this time each morning as we leave the house. I don't know how I would be able to manage this without her help and support. All of you who know my mom know exactly what a gem she is.  Love you, mom!

Going in the right directions

It is a good day.  I'm moving forward in radiation therapy, downward in weight (slightly, but I'll take it), and downward in my arm/hand measurements. I feel like doing Jean-Marc's happy dance! If you don't know what that looks like, check out this video:

First of all, I finished the first week of radiation.  Sure, I was only nuked 4 of the 5 days.  But I had to drive to the medical office all 5 days.  A big part of this so far has been getting into this daily routine.  Juggling getting the kids to school on time, carpools, Jean-Marc's Wednesday "Moove & Groove" class, and my self-imposed exercise regimen makes it a little complicated.  As far as the radiation itself is concerned, there are  no problems to report.  I understand it will take a few weeks for my skin to react. Or not. Maybe it won't?  We can certainly pray for that, anyway!

I also was pleased at my own personal weigh-in this morning. I was down 2 pounds from last week.  I wasn't going to start counting calories until after radiation treatment, but decided it wouldn't hurt to be a little more mindful about what I'm putting in my mouth now.  Especially after weighing in at the doc's office on Monday.  Not that I really "count" that one-I think of the Friday number at home on my scale is "the" number.  Anyway, it was down 2 pounds and I'll take it. Aside from just feeling better and meeting a goal I set for myself, I've learned that reaching and maintaining an ideal weight is important in my lifetime battle with lymphedema.  "Battle" may be the wrong word, because there is no "winning" with lymphedema.  It is something that you learn to live with.  In any event, excess body fat impairs the flow of lymph fluid thorough the tissues and into the lymph vessels.  It is another motivator to drop another 10-15 as soon as I can.  

Finally, I had a pleasant surprise at my now-weekly physical therapy appointment this morning.  The measurements of my hand and arm looked good.  I did not swell anywhere! Praise God! My hand and wrist saw significant improvement--almost back to where I started from before the flare ups before Christmas.  My upper arm did not improve, but it didn't get bigger, either.  I had not been that careful about bandaging on my upper arm so it wasn't a surprise.  The bottom line is that it looks like my "program" of lymphedema self-care seems to be working.  I just need to keep an eye on my arm/hand to see if I start swelling as radiation progresses and adjust accordingly.  If can get through this only bandaging at night, I will be very happy.

Thank you all for your support and prayers. I appreciate them very much.  Keep them coming!

Getting into the groove

Well, I've got 2 days of radiation under my belt.  Only 31 more.


I took this picture today-the door to the treatment room. It's plastered with "caution" signs so no one goes in there and gets exposed to the harmful rays.   Except the patients.  We go in there naked on purpose.

The experience itself is bizarre.  It doesn't hurt.  But it is freaky to lay there and hear the long high pitched "buzzzzz" sound and know that you are being hit with radiation.  It would be really easy to panic and freak out.  Yesterday, for my first session, I just repeated variations of  Joshua 1:9 in my head:  "Be strong and courageous. Do not be afraid or dismayed, for the Lord your God will be with you wherever you go."  I personalized it and said to God, "I know that you are with me and you are protecting me.  Holding me in the palm of Your Hand.  I am wrapped in the shelter of Your mighty wings."  That was pretty much all I thought about.  I visualized His strength encircling me.  Protecting me, yet allowing the radiation beams that needed to get into me though.

The treatment goes pretty fast. I lay down on the slab, arms up over my head holding onto the handlebars. They position and line me up. They also put a fabric pad on my chest.  They tell me that is so the radiation is really focused on the skin.  The doctor today told me that they want to make sure the skin gets treated because that is one of the organs that the cancer may come back to.  After they put the pad on me, the ladies leave and the machine starts to buzz.  It goes for several seconds in one position, the buzzing stops, the machine rotates around to another position and the buzz begins again.  For the past two days, they have taken an X-ray as well.   It all takes about 10 minutes total.

I'll meet with the doctor once a week. It looks like Wednesday is the day. My oncologist is out of town, so I met a different one.  She just asked if I had any questions.  I asked her when I would start seeing skin changes. She said it would take about 3 weeks and then it would hit pretty fast. She said skin care right now was "optional."  I figure I'll start now and then my skin will be in good condition as we go.  I'm also drinking a lot of water, and that has to be good as well.

My lymphedema is under control as well.  As I was doing my manual drainage last night, I could feel the lymph fluid moving. It is a kind of tingling sensation.  I could once again see some of the tendons in my left hand. I wrapped my arm completely last night, albeit loosely.  I want to be proactive on this.  I'm wearing the compression garments during the radiation treatments and most of the day.  I take it off in the late afternoon/early evening so I can cook dinner and clean up without worrying about getting them wet.  It's also good for the skin to get some air.

My prayer requests are pretty much the same:

• That the radiation be effective and ACCURATE.  That no organs are harmed in the process.
• That my lymphedema stay under control. 
• That I remain strong. I keep hearing how radiation makes a person exhausted. I'd like to be able to continue with my daily activities. I do a lot of running around with the kids.  Also, exercise is important to me, especially now that I know it also helps control the lymphedema. Not to mention my weight, which could easily pack on now that I am on tamoxifen. 

Ready, set...go...tomorrow

Back to business Monday.  The kids were a little sad to see their Christmas vacation end.  I was too.  I'm in the middle of taking down all those Christmas decorations that we so joyfully put up.  I'm reminding myself and the kids that we'll be hauling it all out again in about 11 months.  I told Isabelle that we'd put up some springtime decorations in a few months.

I started my new routine this morning.  Drop Isabelle off at school when they open the gates at 8:15, then head over to Escondido to the radiation oncologists office. Mom meets me in the parking lot and hangs out with Jean-Marc while I go in for my daily dose of radiation.

Today was just a test.  Tomorrow will be the real thing. They told me today would be the longest session.  Even at that, I was out in 30 minutes.

First they took my weight. Ugh! Really?  Sigh.  Needless to say, I like my scale at home better.  Or maybe I wouldn't.  (I usually weigh in on Friday.)  The Monday after New Year's is a harsh time to make a girl step on a scale!  Anyway, I was assigned "cubby 11" for my robe. There is a small changing room with about 12-18 cubbies with gowns in them.  I am to strip from the waist up and put on the robe each day.  On Monday, they will swap out a clean robe.

After I was changed, I was taken into the room where they will be doing the radiation.  I climbed up onto a "bed" (slab might be a better word).  It was similar to the one we did the mapping on last month. They had me hold onto the bars above my head and I was told that my only job was to lay still.  They moved me around a bit and started to get me into position.  There was a large glass paneled machine about 6 inches above me in which I could see the reflection of my body.  I could see intersecting red lines projected onto my skin.  I think they were lining these up with the tattoos they gave me last month.  There were several technicians involved, all women.  Not that it would matter.  After 3 births, a miscarriage, breast cancer you lose all sense of modesty, especially up on top.  They took several measurements to get everything "just right."  Then they took a few X-Rays.

I was told to keep lying still.  The doctor was looking at the films.  Then they came back, made some adjustments and took more X-rays.  Then I was to wait.  Then they did it again.  Whatever.  I'd rather they take their time to get it exactly right than to zap me in the wrong place.  I know a small piece of my left lung is going to be in the way, but they need to avoid my heart.  So do what you have to do, gals.

The ceiling reminded me of the tile floor in our old house on Poppy.  Large neutral squares with black diamond tiles in every other corner.  I wonder if they would mind if I snapped a picture of the ceiling?

When it was all over and I was dressed again, a nurse talked to me about skin care.  I'm not supposed to wear deodorant on my left side. No problem. When I do worry about that, I've been using a crystal stick.  I'm supposed to moisturize the upper left quadrant of my body from the collarbone down to the rib, from the centerline to underneath my arm at least 3-4 times a day.  The doctor had mentioned calendula cream. This nurse also mentioned aloe vera and they gave me some samples of cream that is very much like petroleum jelly.  The only thing is that I'm not supposed to use anything on the area 3-4 hours before treatment.

So I'm ready to go.  My hand and arm are looking very good.  A little puffy on the fingers and hand, but not bad.  Last night, I just bandaged my hand.  It actually feels good to be bandaged on my hand.  I can do my fingers and hand myself. I don't know if its the feeling of the fluid being pushed out, or if its just mental knowing that I'm doing something proactive about it.  I've started reading this book called "Voices of Lymphedema."  I'm learning a lot from other people who have lived with this disease, some of them for their entire lives. At least now, there is recognition about the problem.  I am grateful that Kaiser referred me to physical therapy right after surgery.  Others have had to fight for referrals with doctors who didn't even know what lymphedema was. The books are encouraging, though.  The people in there do not let the disease take over their lives.  They learn to accommodate it and treat it on their own, but they still are able to participate in their hobbies and travel. I hope to be the same.

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.