Thorn in the flesh update

So after throwing myself a pity party on Monday night, I got a good night of sleep. Things definitely felt better in the morning, even if my arm was still puffy.  It helped to go to bible study the next morning and be supported by my sisters in Christ there. I realized that lymphedema is my thorn in the flesh. We all have one. This one is mine. It's a bummer because it reminds me of the fact that my body has been forever changed by what happened three years ago. I can run miles and miles, do things I never thought I could physically do. But I will forever be changed because of breast cancer.

I've been pretty aggressive about staying wrapped in my full set of bandages most of the time. I let my arm out for air for a few hours in the late afternoon. Otherwise, I'm all wrapped up, or at a minimum I have my compression garments on. It is hard to move the arm all wrapped up, but I think that is what helps move the fluid through-the combination of compression and movement.

Is it working? I think so. I just had Eric re-measure my arm. This is now 48 hours since the last measurements.  Here is where I stand as of this afternoon:

	goals	best	03/25/13	03/27/13
Knuckles	under 20.0	19.2	19.2	19.3
Wrist	under 16.0	15.8	16.5	16.1
5 c.m.	under 17.5	16.5	18.8	19
10 c.m.	under 21.5	21.3	23.5	24
15 c.m.	under 25.0	24.5	28	26.5
20 c.m.	under 26.0	25.5	27.3	26.5
25 c.m.	under 26.6	26	28	27
30 c.m.	under 28.5	27.9	29.4	28.7
35 c.m.	under 30.0	29.7	31	30.6

Numbers in black means that the measurement is on target. Numbers in orange mean that it has improved (gone down), but still is too big. Red means they have increased.

At first I was bummed to see a couple of reds, but when you look at it, they are only up .5 cm at most. My physical therapist always said that a change of 1 cm was the threshold of being significant. So a .2 and a .5 increase isn't a huge deal-in fact, it can be attributed to variances in the measurement. (Yeah...let's blame Eric for bad measuring, lol!)  But when you look at the orange numbers and compare them to the reds from 2 days ago, the decrease is significant in several places.

So we are going in the right direction. I just need to keep doing what I'm doing for awhile longer. Ideally, I'd like to be back in the black in all spots. I'm not sure where I started, honestly. I had gotten lazy about taking care of it and I know my arm was bigger in some places.

I appreciate everyone's prayers and support. I have been blessed this week with so many friends showing concern and love. Thank you so much.

Tiny bubble

I was in bad need of a new Mepilex pad yesterday. The first one just wouldn't stay on after 5 days, so I just went without for about 12 hours. Yikes. I definitely missed it. When I went into my radiation appointment yesterday, I looked for the nurse but didn't see her. When I was done with my treatment, I asked the technician if it would be possible to get another pad. I didn't say it outright, but I was more than willing to pay for it if need be-whether Kaiser covers it or not didn't matter.  By then we had walked over to their "control center" that is in the next room. (The techs all stay outside of the radiation area and monitor patients on a screen while they are actually zapping them. It's dangerous, after all!)  The tech looked a little lost and said, "Well, the nurse isn't here, and I'm not sure where they are."  I pointed over to a set of drawers and said, "Well, she pulled it out of that drawer over there."  Bingo! They were more than happy to open the drawer and let me pick out what I needed. Nice!  It was instant relief. It really makes it bearable.

My skin is definitely upset about all of this radiation. I have a red arc from my collarbone, down to my rib cage that goes underneath my arm and a little onto my back. The worst patch is the underarm area where the lymph node bed was. Yesterday after my shower, I noticed a small blister forming. Lovely. I have a feeling that I have more of that in store for me.

My disappearing aloe

Today my treatment was shorter. I have gotten used to the gyrations of the machine. It moves position about 4 times and zaps from different angles. Today, it only moved twice. I was zoning out a little, waiting for it to move a third time when I felt the table I was on moving. It was time to go. Really? That was short! The tech told me that tomorrow will be another session like today, and then we will be moving on to the scar area for the last 5 sessions. Praise God! I am pretty sure that when the scar is being treated, it will leave out the underarm area. I don't think it could take much more. My poor aloe plant is running out of leaves!

My lymphedema continues to be under control. That is another praise report, because we are really hammering that quadrant of my body that is impaired lymphatically.  But I'll be honest...wrapping my arm in bandages every night is getting pretty old. I'm not sure how much I'll have to do when radiation is over. I'll talk to my physical therapist about that this week when I'm there for my appointment.

I have something else that came up this week that is very exciting, but it deserves a post of its very own and I'm short on time today. The first half of my week is so busy with kids' activities, school, and just taking care of the family.  I will definitely appreciate having the "extra" time every day once radiation has ended.

Only 6 more to go!

Taking a day off

Yesterday was a beautiful and sunny day here in San Diego.  I usually dress up a little for church, and almost always wear my wig. I kind of take a mental day off from looking like a cancer patient.  I don't wear my wig all the time-I don't mind the visual reminder to the world that things aren't completely peachy for me right now. I'm not complaining, that is just what I'm dealing with. I've worn scarves to church before and I seem to cry during worship when I do. I'm not sure why.  I don't worship any differently, my heart is the same. But something about raising my hands in praise while I'm covering up a bald chemo-affected head. I don't know. I usually end up with tears streaming down my face while I sing. Then the nose starts to drip. It is distracting. The wig works for me on Sundays.

Anyway, because of the glorious weather, I decided to wear a dress that was sleeveless. After putting it on, I realized that a compression sleeve that goes all the way up to my armpit would really spoil my fashion statement, so I left it off.  Why not let my arm get a little sunshine?

So it was a day off from cancer AND lymphedema treatment.  Another reason I decided to do it was because my forearm tends to swell right at the point where the sleeve and the gauntlet meet, about 5 c.m. up from the wrist. Why not give it a break?

Of course, I kept a close eye on it all day and did two good sessions of manual drainage.  It didn't seem to swell at all.  Thank you, Jesus!

In the afternoon, I sat out in the sunshine in the backyard and let my arms soak up some sun.  I'm always looking for some Vitamin D, you know. It felt wonderful.  The only thing that came close to spoiling the day was a fussy and demanding 2 year old. He is a blessing, but requires a lot of attention right now. But I digress.  My arms, especially my left one, are so pale. The left one can look shriveled up, especially when I take off the bandaging.

Ah yes, the bandaging.  After my treatment free day, I dutifully wrapped my arm from finger to armpit in 5 layers of bandaging before going to bed and am still wearing it now as I type.  It is Monday, after all.  Back to radiation, and back to lymphedema.

But it was sure nice to have a day off from it all.

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!

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.