Make Up

I got a call yesterday (Saturday) from the radiation oncologists office.  The machine was fixed, and the doctor wanted to have me come in today (Sunday) for a treatment.  I was glad to oblige, and was able to squeeze it in before church.  I just left the 3 kids in the car with the DVD running with a Charlie Brown DVD in it. I'm glad we were able to make up for last Friday...so it looks like I'm back on track for the February 17th finish.

Speaking of make up, I've been trying some organic make up. I'm trying a brand called Coastal Classic Creations. It's billed as being "ultra pure."  I'm still getting used to it.  I've been trying some eyeshadow that doubles as an eye liner if you wet the tip of the brush and some mascara.  My first impression is that I like how it looks when it goes on, but it doesn't last like the toxic stuff does.  I tend to find dark shadows under my eyes a few hours later. If I'm not wearing anything on my head, I look like a sick person!  I'm still going to stick with this brand--their products are safely rated according to the Environmental Working Group's safe cosmetics database.

I like to wear makeup on Sunday mornings to church, so I wore the thew organic stuff this morning. I learned something else about it....it definitely is not waterproof! A dear sister that I have gotten to know at the women's bible study over the past few years has been diagnosed with uterine cancer. Her hysterectomy is coming up this week. I was glad to see her this morning and spent some time with her before the service.  She is right at the beginning of the cancer journey and I can so identify with what she is going through. She had questions about chemotherapy and wigs. She has so much to go through.  I've been there, and I know. Even though our cancers are different, there is a lot that is similar. We not only are sisters in Christ, but now we are cancer warriors together.

It broke my heart during the worship time. I glanced over at her and saw she was crying. Just like I did for several Sundays after my diagnosis.  I couldn't both sing and keep it together. I could either listen to the words and maintain my composure, or sing like I wanted to, my voice croaking and crying. I love worship time and love to sing. So I would try, but then the tears would come and roll down my face. Seeing my friend struggling sent me right back there to where I was last June and July. I cried and cried during worship and washed my make up away completely.

The words to the songs we were singing talked about Jesus being the one who saves us from death. That is true, and I believe it with every fiber of my being.  But the concept of "death" is bigger than just this body dying. The soul and spirit are eternal.  That is the part that Jesus has rescued His people from-we won't be eternally separated from God. This present body I have will die, and that is the hard part. It is all we know and we struggle to keep it going.  The apostle Paul likens these bodies to tents. There is something much better to come. "For we know that if our earthly house, this tent, is destroyed, we have a building from God, a house not made with hands, eternal in the heavens." 2 Corinthians 5:1.

I've been pondering the concept of "death" lately. Partially because of my own fear of recurrence. Partially because a fellow cancer blogger, Daria, passed away last week from breast cancer a few days shy of her 50th birthday. Maybe its because there has just seemed to have been such a storm of people being diagnosed with cancer. The specter of death seems to be all around. I just don't want to "go" there mentally, but I can't avoid thinking about it.  It may not be cancer. Maybe it will be old age, or a car accident, or something else. Everybody's body is going to die.  I've just got a preview that my way to go may be cancer.  I hope not.  But God only knows.  But I do have comfort and assurance that when that time does come, I won't cease to exist. I will have just changed addresses. I'll be with the Lord in glory with all of the others who have accepted Jesus as their Savior.

But it still is hard. I just have to trust God each day and put my faith in Him.

Please pray for my friend who is having surgery this week.

Another day off

Drat!

I've got the day off of radiation and I would rather not have the unexpected holiday. I got a call as I was headed out the door this morning at 7:25 to take the kids to school. I had already turned the house alarm on and was about to go out the door.  I considered just letting the machine get it, but decided to see who it was. I'm glad I went to the phone. It turned out to be the radiation office saying not to come in this morning-they were having trouble with their machine. They rescheduled me for 2 p.m. At noon, they called to say not to come in at all.

I'm glad I didn't trek all the way over there this morning just to be turned away.

But this will extend my treatment time by a day. Not cool!  The new end-date is February 18th.

Let's pray that they get their equipment fixed over the weekend!  I also would appreciate prayers that this hiatus will not adversely affect my treatment.

Making plans and connecting dots...

I'm in a new phase of my radiation therapy. No longer do they put the pad on my chest to bring the dose closer to the skin. The positions of the machine seemed to be the same to me, but they could have made some adjustments.  Not having the pad should help my skin out, or so they say.  The radiation will go in a little deeper, I suppose.

Today they told me after the treatment they were going to "plan the scar." So I was just supposed to continue lying there while they did it. Whatever--I'm going along for the ride.  Apparently, at the end of radiation, they will spend some time giving my left scar some extra attention with the radiation beams.

Today, after the typical treatment, the techs began to slide in extra plates on the machine above me. It felt like being a bug under glass in a NASA experiment at the international space station. The extra plates made the machine come down to almost my chest. It is really hard to describe what it looked like. I found this picture on the internet that comes close. (That's not me!)  Then I got to wait for my actual doctor to come in. Thankfully, the techs were sensitive enough to take the robe I was laying on and drape it over me so I wasn't exposed like a piece of meat on the table.

I rarely actually see the doctor. Today I passed him in the small hallway as I was arriving and gave him a smile and nod. He just passed by without even noticing that I was there. I was a little miffed by that. Hello!! After a few minutes of lying there, he came in and began to draw dots around my scar. It went all around the scar and he mentioned that he would include my drain scars as well. Then he left. All he said to me was, "How are you today?"  Not like he even listened to the answer.  I could have done the Charlie Brown "waa waa waa waa" and it wouldn't have made a difference.  Maybe he was just having a bad day. I actually liked him the first time I saw him. So I'll give him the benefit of the doubt today and be merciful in my judgment.

After the doctor left, the techs then laid a transparency on top of me and then traced the dots and connected them. They took a picture of it for my file and I was done.  They said I could see the doctor if I had any other questions. I was kind of annoyed by his attitude today so I declined. It all is so technical and complicated, I don't even know where to start with questions! I just am trusting that they know what they are doing and that this is going to help the cancer not to come back.

I do get to wash the marked dots off of me, which is good. There is a small round sticker with a vertical line on it that I am not supposed to remove. It helps them to line me up on the machine each day. They've replaced it once so far.

After radiation, I went to the gym. It was fantastic today.  I did 35 minutes on the elliptical, back up to pre-surgery levels.  Yeah! Then I decided to do 30 minutes of intervals on the treadmill.  A very good friend suggested that a 10 minute mile was a "reasonable" speed.  I had been doing about 11 1/2 minute miles for the 5k. So I decided to do my speed intervals at a 10 minute/mile pace. On the treadmills at the gym, that works out to 6.0 speed. It seemed fast at first, but I was able to do it without my heart rate getting past 90%. I was very glad to see on the slower intervals that my heart rate went back down to about 60%. I have a tendency to not dip back down when I'm doing intervals that are too hard. So this was good news. Maybe I'm getting in better shape.  I would love to do the 5k in 30 minutes or less....so that is going to take some training on my part.

I have a Jillian iPhone app that I experimented with after the cardio session. You can pick a body part and see short videos of Jillian demonstrating exercises and telling you how many to do for each. I chose legs. There were 3 moves: a plie squat in second position where you would rise on your toes at the top; a "curtsey" squat; and a side lunge where you would raise the leg up each time. Okay.  But she wanted me to do 5 sets of each!! Yikes! Not after all the cardio I had done. I did 2 sets and know I'll be feeling it tomorrow!  I just dig all things Jillian!

The workout was great and made me feel really strong.

My prayer requests:

• That I continue tolerating radiation well.  That my skin does not burn to the point that it is too uncomfortable or itchy. So far, it hasn't been bothering me too much, even though it is red and chafed looking. My energy levels remain normal. Many have told me that they got very tired towards the end of their radiation. I hope I can carry on at this current level of activity. 
• That my lymphedema continue to be manageable.  I had physical therapy yesterday and was happy to see that most of my measurements were within the same range as before. There was some slight swelling at the 10 c.m. mark, but it wasn't too bad. It probably had gone down after she did the manual drainage session with me. I'm wearing bandages about 12 hours a day. 
• That I am cancer free.  Someone asked me today if I was. I just don't know.  Maybe the surgery got it all in July?  Maybe the chemo got the rest of it? Maybe we are nuking the stragglers into oblivion?  I just don't know.  I like to think that this radiation is kind of preventative...to help keep it from coming back.  But we just don't know.  I'll blog more later about where to go from here.  But for now, please pray that I am cancer free. 

Just about half way

I got a surprise this morning at the radiation office.  A referral for another set of blood work. Lucky me! He said they needed to get my blood counts now that we are about half way through my radiation treatment. I need to get them as soon as possible. It's a busy few days right now, I don't think I'll have time to get it done until Thursday.

Half way?  Already?  Today was treatment number 16 out of 33.  It is going by pretty quickly.   Traveling every day to Escondido to get zapped definitely adds another component to an already busy schedule.  But as they say, time flies when you are having fun. Right?

I'm doing pretty well, considering. The aloe seems to be helping. I'm not having too much discomfort or burning feeling yet. There is increased redness in the area, but it isn't too bad.  My arm swelling seems to be under control as well, even with my "day off" on Sunday. I continue to bandage at night and wear the sleeve during the day. I have a physical therapy appointment tomorrow morning and we will measure to see how I'm doing. I also continue to exercise about 6 days a week.  Not only does it keep me sane, it helps me stay strong to fight this fight.

I also am taking some natural supplements that were recommended in an article on natural remedies for lymphedema that a friend, (Tamara from Natural Health Solutions), sent me. I'm taking bromelain, horse-chestnut extract, and rutin twice a day.  

Where bromelain comes from

Buckwheat contains a bioflavonoid called rutin

Horse chestnut

One thing that I am sure is continuing to help me is your prayers. I am so blessed by you all.  Today at Bible study, two different women told me how inspirational I was.  I do hope I can help others as I go through this, but I take absolutely no credit in that. It all is the work of God in my life. I am weak, He is strong. If it wasn't for His grace and faithfulness, I would be a quivering heap of fear and despair. I am so thankful that God has not forgotten me.  That He hears me when I call on Him, even if I haven't been faithful in my devotions and prayers. Any inspiration that I may give I want to give credit to the One who has given me the strength to wake up each morning and fight this fight. I pray that everyone would grow closer in their relationship with Jesus as they see Him help me along this road.

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.

Living with Cancer: Daria's funeral service at Memories Funeral Home

Living with Cancer: Daria's funeral service at Memories Funeral Home

Rest in peace, Daria

Daria's husband reported today that his wife passed away last night after a long battle with breast cancer. I never met Daria in person but felt a sisterhood with her-bound together by a common fight against a terrible disease. I admired her courage and strength. She blogged daily up until the very end.  While her posts showed that things were not going well, the end came on so suddenly, I am in shock at how sudden her voice is silenced.

I didn't sleep well last night. I wasn't fully awake, but spent a good bit of time in a hazy state of half-sleep/half-awake. I remember several times thinking about Daria in my sleep.  This morning when I woke up, I held her and her family up to the Lord in prayer.

Will you join me?

Heavenly Father, I lift up Daria's family to you now.  Please give them comfort and peace, knowing that their precious Daria is no longer in pain.  I pray that You will make Your presence felt to them as they grieve their loss. Please draw them close to You, and comfort them like no one or nothing else can. You are the God of all comfort, and I pray that You will be glorified in this situation. I also pray that you will comfort all who knew Daria, even those of us who only knew her online.  Give us all Your peace. For those of us who are fighting cancer, I pray that you would give us courage in the face of this loss and remind us every day that You will work this loss out for the good according to Your purposes.  In the name of Jesus, I pray, AMEN

Reality check

I forgot to mention yesterday that I'm trying something new for the burning...aloe.  Internally and externally.

A friend from church who is a breast cancer survivor recommended a juice called "Aloe Gold."  You drink it 1-3 times a day in 2 ounce shots.  It is pretty nasty at first, but I've gotten used to it.  I also bought a couple of aloe plants.  Each day I take a couple inches of aloe leaf in a baggie with me to the radiation office. In the changing room, I split it open with my fingernail and rub it on my ever pinker skin.  I like using the real thing, not some frangranced lotion formula.  The only drawback is that it smells like body odor. Really! It took me a couple days to realize that it wasn't ME that was stinking, but it was the aloe!  (Yes, I shower, but I've been hesitant about deodorant since my diagnosis. Besides, I'm not supposed to use any on the left side anyway.)

I thought I had successfully avoided the radiation doctors' scale this week. But today, they had me step on it. If readers recall, they had me step on it the first Monday after New Years at my first appointment. I was shocked at what it said, even though I knew that I should only pay attention to MY scale, weighing in at the same time each week and all of that. But it did spur me into counting calories and increasing the exercise time.  Today I had dropped 6 pounds according to their scale. I was pretty stoked at that and made a comment about how it was "moving in the right direction."  As I was in the changing room, the tech commented that I shouldn't be "dieting" during treatment.  He said that the treatment calculations were based on me being a particular weight and if I lost too much, the radiation treatment wouldn't be right.  I asked him if I had gone too low. He did a few clicks on his computer that had my record up. He said I had lost 3% of my body weight and that 10% was the limit. But really, he would prefer me not to lose any more at all.  He joked that I could use it as an excuse to go to In and Out Burger every day.

Well, I'm not going to do that! I figure gaining weight would be just as bad as losing too much.  So I'll focus on maintenance rather than losing. Besides, I figure the 6 pounds just reflected weight I put on over the holidays...after the radiation mapping in mid-December.

Daria

So after all that angst over my weight, I came home and decided to catch up on the blogs that I follow.  I was sad to learn that the author of one blog I follow, Daria's "Living With Cancer" had taken a turn for the worse today. She has metastatic breast cancer and had been on a clinical trial after exhausting all of her chemotherapy options. She has been having a lot of problems lately and was very close to being taken out of the trial. Today, her husband came onto the blog to post that she is unable to post to her blog anymore. She is in the hospital in a lot of pain. It doesn't look good.

Hearing the news made all of my issues seem so silly and unimportant. So what if I've gained or lost a few pounds? I'll be honest, it has been hard for me to follow Daria's blog. Early on in my journey, before I knew the extent of my own cancer, I read some bulletin boards where some women with metastatic cancer had posted. It was just way too close to home, and it scared me to death. It still does. That night back in June was one of my darkest. That could be me.  It still could. But even though its hard, I have followed Daria for the past several months. So to find out her condition really is a reality check. Breast cancer can, and does, kill.  I am so sad for Daria and pray for her comfort and peace. I am sad for everyone with advanced cancer. It just stinks. I yearn for the time when there is no disease, no tears, and no death.

Please take some time to pray for Daria and her husband, Don.

Status report

This week has been a busy one!  Not a whole lot has happened on the fighting front, so I've been a bit quiet.

I continue to go in each day for radiation treatment.  It is starting to show on my skin.  It is the middle of week 3, just like the radiation oncologist said.  There is some telltale redness under my arm. It feels a little uncomfortable when I am driving to have the seat belt over my chest. I have a little fluffy thing to protect me, but I still feel like its chafing a bit.  I have to be careful doing my manual lymph drainage as well.  An important part of it is showing the body an alternate pathway to drain. In my case, I am trying to train the fluid to drain down my left side and into my groin. The involves rubbing the left side from under my armpit and down to my hip. The area under my arm that is being treated, including the mastectomy scar, is tender. I plan on asking my physical therapist if we should try to move the fluid across the midline to the right armpit.  This burning is only going to get worse.

To manage the lymphedema, I've been wearing the bandages on my arm for longer in the mornings and early afternoon. I even wore them all day on Tuesday. I took the day off of exercise, so I figured I might as well work on the arm.  I hate to exercise in the big arm bandage.  I don't mind the compression sleeve/gauntlet.  Tomorrow I go into my physical therapist and we will measure the hand and arm. Hopefully I've been able to keep the swelling down and maybe even helped the one area in my forearm that measured bigger last week.

Aside from treatment and cancer, I am very glad that the women's bible study started up again this week at church.  We are going to be going through Kay Smith's book and journal, "Reflecting God."  It is so nice to have a regimented program of study to go through each week.  I am sticking with my resolution of going through the Bible, but it is nice to have something topical to keep me going as well. Last year, we did another Kay Smith book, "Pleasing God" and this should be a good sequel.

The fellowship that we share with each other on Tuesday's is so precious.  This week, one woman pulled me aside and shared with me that God had a word for her about me.  I believe this particular woman has the gift of prophecy, because she has shared things with the group on several previous occasions. Anyway, the Lord told her that I would not only speak to many women, but the scale that I would be speaking to them would be enormous. More than she could imagine, she said.  It made me recall something that another sister told me last summer after I was first diagnosed.  That my mission now was to speak. Interesting and exciting! I know there is a reason that I am going through this trial.  I pray that it is not only for my own growth, but that in some way I can minister to others. I don't know what God has in store for me yet, but want to yield myself to whatever it is that He has in His plans.

My prayer requests:

• That the burning of my skin be manageable.  I know it needs to happen.  I just want to be able to do my normal activities without too much discomfort.
• Along the same lines, that I do not get too tired. Fatigue is a common side effect of radiation. I have resolved in my mind not to give in to that. I want to continue with my exercise program and daily life. Of course, if my body needs rest, I will give it rest. I just pray I can get through this without extra fatigue. 
• That my lymphedema stays under control. I'm willing to do what I know how to do to keep it there. But I know there is a large part of it that I can't control and I need God's help on.
• For my friend, N, who was recently diagnosed with uterine cancer. She is in that very scary place of not knowing exactly how "bad" it is yet. She knows a hysterectomy is in her very immediate future, but doesn't know if the disease has spread.  Is it just me, or does there seem to be a cancer storm going on right now? So many people I know and know of that are in the process of either being diagnosed or tested for some form of cancer.  

Missing something?

Something freaky happened last night.

I was taking the polish off my toenails and my left second toenail (the one next to the big toe) fell off!  Not completely, about 98%  It is still kind of stuck on one side.  I didn't want to yank it out and make it sore. I just cut it down sideways and will wait for that side to fall out too. Yuck!  There is a little nail there, but it is really small.

I had experienced some darkening and lifting of that nail in the middle of my chemotherapy.  I think it was after round 3 or 4.  I'm probably in for the same thing on my other foot because the same toenail is black.

Thank you, taxotere!

The machine

I've been at a loss for words in describing the radiation machine. I googled some images and found this that is pretty much like what I see every day.

The machine rotates around so it can zap you from several angles.  I get to have the wedgie under my knees, but I also have to have my hands up over my head, holding onto a bar.  Oh, and I don't get to wear my shirt, either. ;-)

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!

Hiccups? That's Life!

Today was my 6th day of radiation treatment.  I'm getting used to the routine, and the techs at the radiation office. There is one guy who works there and always calls me "Mrs. Jamois." Today I finally asked him to call me "Tonya."  It's weird being that formal when he has pretty much seen everything there is to see above the waist. Besides, "Mrs. Jamois" is my mother in law!

As the radiation got started, a worship song popped into my head. I couldn't remember all the lyrics, so I kept repeating this in my head as a prayer: "Thou o Lord, art a shield about me; You're my glory; You're the lifter of my head."

As I said, I'm getting used to it all.  They position the machine above me, and it does its radiating for about 30-40 seconds.  Then it moves over to my left side and does it again.  This time after it moved, it didn't start again. After a few more seconds, the guy comes in and tells me to continue laying still...the computer just had a "hiccup" and was coming back.

A hiccup?  Okay.  As long as the computer and the machines it presumably runs know where and what they are supposed to be doing after it comes back.

So I just laid there for a few minutes.  It is very important not to move--if you move, then you might get "treated" on skin/organs/tissues that shouldn't be radiated at all.  Like the heart.  I'm good at laying still, even when I feel an itch.  I wonder what would happen if I had a hiccup? Or even worse, a sneeze? Hopefully we won't find out.

There is an iPod dock in the room and I decided to focus on what was playing instead of the position of my body.  It was Michael Buble's "That's Life."  I'm more familiar with the Frank Sinatra version, but Buble is good too.  It kind of made me laugh to think of that song being on at that particular moment.  Yes, I certainly am living life, aren't I?  Isn't that what you say to a person who is complaining about what a rotten situation they are in?  Suck it up, THAT'S LIFE!  Indeed it is.  It rains on the just and the unjust. (Matthew 5:45).

A few minutes went by and the guy came back in and said they were ready to continue with my treatment. As I left the building, they seemed to be having all kinds of computer issues. The nurse at her station was asking everyone else if "they were down?"  and if they should "call I.T."  Gosh, I sure hope those computer issues don't affect the actual radiation.  It doesn't exactly instill confidence.  It is a good thing I have supreme confidence in God, though.  I continue to visualize His protection all around me, shielding me.  I've prayed this on my own, and with others.  I know God will protect me thorough this, regardless of their computer issues.

Later on at the gym, I listened to the lyrics of "That's Life" more carefully.  It basically talks about life being a series of ups and downs.  That certainly has been true of my life since my diagnosis.  Extreme downs, and pretty good ups. I don't know if I know what an "extreme" up is anymore.  I am trying to learn to focus on the present and enjoy it but it is hard when everything is geared toward treatment and preventing a recurrence of cancer.

My workout today was a good one. I decided to try something new--to time my 5k on the treadmill.  Up until now, I've only run intervals, 2 minutes walking, 2 minutes running.  I figured I may indeed walk part of the 5k, but let's see what I can do.  I was able to run the whole thing! Granted, it took me awhile (38 minutes and change).  But I ran the distance and now have something to improve upon.  I realized as I was running that working out is part of my treatment.  It's my therapy.  On good days (like today), it is as close to the highest high I can get right now. It is as important to me as going in to get nuked every day. That puts a new spin on it. If I ever was tempted to skip a day, that puts it into perspective.  I am following the lesson from last week though, and will take the day off tomorrow as a "rest day" after 4 straight days of exercise.

My prayer requests:

• That the radiation be effective in treating any remaining cancer cells in my body as well as effective in preventing a recurrence of the cancer. That it be accurate and not injure any other organs.
• That my skin not burn and be too uncomfortable as the radiation progresses. 
• That our family stay healthy. Isabelle has a slight cold right now, and I am praying that the rest of us don't get it. 

For those of you unfamiliar with the lyrics of "That's Life" here they are:

That's life
That's what all the people say
You're riding high in April
You're shot down in May
I know I'm gonna change that tune
When I'm back on top in June

I say that's life
& as funny as it may seem
Some people get their kicks
Stompin' on your dreams
But I don't let it, let it get me down
'Cause this fine ol' world keeps spinning 'round

I've been a puppet, a pauper, a pirate,
A poet, a pawn & a king
I've been up & down & over & out
But I know one thing
Each time I find myself, flat on this face
I pick myself up & get back in the race

That's life
I can't deny it
I thought of quitting, baby
This heart wasn't gonna buy it
And if I didn't think it was worth one single try
I'd jump right on a big bird & then I'd fly

I've been a puppet, a pauper, a pirate,
A poet, a pawn & a king
I've been up & down & over & out
And I know one thing
Each time I find myself flat on my face
I pick myself up & get back in the race

That's life
That's life & I can't deny it
Many times I thought of cutting out
But my heart won't buy it
But if there's nothing shakin' come this here July
I'm gonna roll
I'm gonna roll
I'm gonna roll myself up in a big ball & die
Can't deny it
That's life

Michael Buble - That's Life Lyrics @ LyricsTime.com

Unleaded

I went back to the gym today and am happy to report that the "bucket of lead" feeling that I had 2 days ago is gone.  I did an hour of intervals on the treadmill.  Granted, my "running" is probably slower than many.  But I figure my legs are shorter than many as well, so there!  I still felt good and decided to do a little extra to make up for the piece of pear tarte I had last night, so I got on the stationary bike and did another 20 minutes.  All in all, I burned 650 calories.  I guess there is something to be said for rest days. I'm thankful that I felt normal again. I was worried that the fatigue I had heard about radiation was setting in.  Hopefully, it won't!

I am also happy to report that I am definitely getting regrowth of hair on my head.  A friend gave me a kit of Ovation cell therapy for my hair.  I'm using it about 3 times a week.  There is definitely a noticeable dark fuzz. I'm liking it!  I didn't like my bald head so much-I've got a few moles that made me self conscious.  Funny the lack of hair itself wasn't the embarrassing thing for me.   No sign of leg or underarm hair.  They can stay away, thank you very much. I'm pretty sure the radiation will permanently take care of the underarm hair on the left side. I haven't shaved my legs in months.  Call it a chemo silver lining.  

I've been pondering my scars. I was doing my manual drainage this afternoon after my shower and included rubbing some Vitamin E oil into my mastectomy scars.  Since it was right after my shower, I had no clothes on and looked for my cesarean scar.  You know what??  I couldn't even see it!  Now that scar is one that I always kind of ignored.  I knew it was there, and didn't like it one bit.  Maybe it was a little bit of avoidance.  At ICAN conferences when other women were photographing their scars for various photo galleries, I managed to avoid it.  Now it is 11 1/2 years later and I can't even see it.  I had to look really hard and saw a very thin white line. When did that happen? I wonder if my mastectomy scars will look like that someday?  Right now, they still look like Frankenstein.  I'm coming up on my 6 month mastectomy anniversary.  I think I will take a photo of them just to record what it looks like.

I just finished watching a movie that made me cry and cry.  I actually like to do that in front of movies. It's a good emotional release. This one was called "Letters to God."  It's about a little boy with brain cancer who writes letters to God.  Through his life and his battle with cancer, he ends up inspiring dozens, if not hundreds, of other people to come to know Christ and have a relationship with God. At the end, he does pass away which pretty much did me in.  I cannot imagine having to say goodbye to one of my kids like the mom in that movie did.  Even with that, though, it is inspiring and uplifting.  It reminded me that while God's plan may not be our plan, it ultimately is the best plan.  The lives that this boy touched and souls that were saved as a result was amazing. I hope my life bears fruit like that little boys did, cancer or not.

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!

A bucket of lead

I went to the gym today with my mom after radiation (day 3).

We started on the Stair Master for 30 minutes.  I set the level to 8 on an interval training program. 8 used to be a warm up level for me. I'm getting stronger, so I thought it was a good level to start at.  During the first 10 minutes, it was really hard.  But I figured, I was "hitting the wall" as I like to say.  You just have to push past that initial feeling of fatigue and exertion and then there is no stopping you.  Well, this wall was impenetrable today. I never did get over it.  I am glad to say that I sucked it up and stuck it out at level 8, but man, it was really hard.

Then we moved onto the treadmill.  I again set it for 30 minutes at an interval program. I usually run while its on the flat interval, and then walk on the incline.  My heart rate was not quite recovered from the Stair Master, so I walked the first few intervals until it came down to the high 130's.  Then I ran whenever my heart rate was getting back down there.  But still, it kicked my butt.  I felt like my body was a bucket of lead!  I sucked it all up and at the end of the workout had burned about 530 calories, but man, did I pay for each and every one.

Now to figure the reason.  I've been sleeping very well the past couple of nights, so I'm rested.  It couldn't be fatigue from radiation already, could it??  I sure hope not.  I'm going to give my body a break tomorrow and take the day off from working out.  Besides, I have a physical therapy appointment tomorrow anyway. I'm thinking that should do the trick.  I probably haven't been giving myself enough "rest" days.

We'll see on Saturday.  Otherwise, it will be a long 6 weeks.

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.

Bring in the new

Happy New Year to everyone out there.  I hope 2011  brings everyone health, peace and a greater knowledge and relationship of our Lord.

I had started to write about how I hoped 2011 would be better for me than 2010.  But then I started to think about the good things that came about in 2010:

• A new niece (Kate) and a new nephew (Caleb).  What a blessing babies are! It is great to be an Aunt twice over in one year.
• The kids continued to do well in school.  Olivier made the transition to middle school well.  That was a big change for all of us, but it went well.
• Eric had a great year in his job.  In this economy, that is saying something! His superiors like him, and like what he is doing for the company. 
• I got into the best physical shape of my life in the first half of the year.  I've fought the second half to try and keep it, lol. 
• The kids are healthy. 

Yeah, 2010 did have its BIG challenge--breast cancer.  The reason we are here. I wouldn't add that to the list of blessings right now. Perhaps at some point in the future, I will be able to see the good in it.  Right now, I'm in the thick of the fight. 

I never have been one to make New Year's Resolutions.  If I decide I'm going to do something, I do it, regardless of the time of the year. But this year, I can't help but feel like its good to make some goals for myself.   Physical, mental and spiritual goals.  So here they are:

• I want to lose another 15 pounds. I'm going to wait until after my radiation to really get serious about this.  But I know how to do it-I lost 50 pounds last year.  I was about 10 away from my goal when I was diagnosed.  Suddenly, losing weight didn't seem as important when I had cancer to think about. Since diagnosis, I've put about 5 back on-and that is on top of losing all of my breast tissue.  After radiation ends in February, its going to be back to counting calories until I reach my original weight loss goal from 2009.  
• I would like to get through radiation without a flare up of lymphedema.  This is definitely out of my control.  But I can do what I can do to help: twice daily manual drainage; keeping up with exercise, even if radiation makes me tired; avoiding salt; bandaging; and wearing my compression sleeve.  If after all of that I swell up, then so be it.  But I will have done all I could do. 
• On the spiritual side, I want to get back into a disciplined daily Bible reading program.  I'll admit that I've let that slide over the past year.  Its strange because in some ways, my walk has deepened nonetheless.  But I miss God's Word, and I know that it feeds my spirit.  A few years ago, I dove into reading both Old and New Testaments in one year.  It was a push, and I didn't have a 2 year old at the time.  I found a reading schedule on Blue Letter Bible that will get you through both in 2 years.  It alternates one day of Old Testament with one day of New.  Today's reading was only 3 chapters of Genesis. I can do this.  I NEED to do this, and I will.  I also want to keep up with the Women's Bible Study at church that starts later this month.
• I'd like to do the Susan G. Komen 3 Day walk in November. 60 miles in 3 days.  I'll focus on that more after radiation. I need to make sure I can get through that without my arm swelling up like a balloon.  I don't want to let lymphedema take me out of that.  First things first. 

I may come up with more goals as the year goes on.  For me right now, I think simplicity will be best.  It would be easy to make a big laundry list of things "to do" and then easily forget.  So there it is.  

Out with the old, bring in the new!