Sharpies Again

Thursday morning I woke up, couldn't lift my head off the pillow. You have probably had this happen, the massage guy called it a "stinger". It is a mad inflamed muscle that is pinching a nerve, and it is temporary. Happened while I was sleeping, just turned the wrong way during the night I guess. It only hurts when you move a certain way. But OH MAMMA it hurts when you do move a certain way. Mine was from the spine around the left central shoulder blade and up into my neck to behind my ear. The trapezius muscle.

This was the day of the BOOST calibration, where I need to lie still with my arms stretched out over my head for, oh, forty five minutes, not the normal ten to fifteen. My arms usually fall asleep in the ten minutes. I just couldn't picture longer today. Phooey, but oh well. I was really upset for the first five minutes I felt this pain. I thought, oh my what if I can't have the BOOST today? Then I realized, it will all work out. God knows how to handle this, and I need to take His direction. Trust Him to heal this, and to guide me what to do.

I asked Corey to drive me, as driving wasn't going to happen.  His last final was Monday, so he is available. Took a hot shower, then Advil. By 9:30 I was ready to brave it. And it was fine. The new position is fine, similar to the first twenty five treatments as I am lying down on  my back, arms stretched as flat as I can do it over my head. My head is turned to the right, which was the way I COULD turn my head. It all worked out.

The new BOOST radiations are four treatments each visit, twenty four to twenty nine seconds each. They still do two x-rays when I first lie down, the doctor looks at them and they shift the table slightly each time to get the target accurate ( called IMRT). Now the Trilogy machine does four stops in its orbit from above my right shoulder to below my left shoulder. I lay still and listen to the Christmas Carols.

Guess how they marked me for this BOOST calibration. Out came the Sharpies again. Am I the only one that finds this ironic? Multi-million dollar Trilogy machine, highly paid doctor and technicians, and they use Sharpies to make three X's and two lines so they can line me up the same way each BOOST treatment. They said they usually tattoo these also, but they thought I could be careful enough to not wash or scrub these Sharpie marks. OH YES, because those tattoos hurt, and one of the X's is right on the nipple. Yee - ow!

Only six more to go, WHO-HOO. I'm getting more sunburned and swollen. No bra, couldn't even think of it. Have my Barely There's and loose fitting shirts. By Friday night, I am tired.

Saturday I woke up, felt like starting a little Christmas Cookie magic, and was exhausted after an hour. EXHAUSTED.

I slept all afternoon. 

So we skipped the Christmas party Saturday night, which was really frustrating as I LOVE going to this one.  I know so many of the people.  There's always next year.

I am able to feel energetic for a few hours at a time, then I crash. Then energetic again. And crash. I don't seem to have any half speed about me. That might be my personality.

Today I took Dad to lunch and Christmas shopping, for things for him to give the folks on his list. He's a jolly seventy nine years old, has had a couple of health issues but keeps on going. Strokes have slowed his mental acuity. He still has a lively sense of humor. He drinks milk at every meal. Maybe that's the secret?

I have been so so lucky to not get sick during radiation treatment. My white blood cells have been below normal since the second week. I have tried tried tried to avoid crowds, and wash my hands constantly. THANK YOU Lord that I am healthy, just tired and sunburned.

The neck muscle is just a little sore now, the pain has diminished continually since Thursday morning. And my other muscle aches that were plaguing me for the past two months have diminished continually also.

I have been resting when my body tells me. Drinking lemon juice in water daily (one lemon's worth per day), yogurt every day, yoga two to three times a week (mainly stretching, we are just starting out), and acupuncture every two weeks. Meditation every afternoon. Love that.

I am trying to modulate my expectations of Christmas this year. All our kids (two sons and daughter in law) will be here for ten days, which is the DREAM of my DREAMS. I want to be healthy and be able to pace my self so I can enjoy times together, and then come and rest. That's the hard part, I don't want to leave the fun or neglect a chore to take a nap. I am a nut about Christmas.

SO this Christmas, more than ever, let me remember what Christmas is really all about. Love.
More than Valentines Day could ever be, Christmas starts and ends in LOVE.

I'll buy Christmas Dinner dessert and I'll skip the party, so I be still and absorb God's love.
May it spill over to those around me.

A Ping Pong Ball

Always learning.

I asked the oncologist when I saw him two weeks ago, Who tells me when I can get the port out of my arm and, What follow-up tests do you do to make sure we got all the cancer? (When the port was put in, I was told it would come out after they did tests, after radiation, to make sure they didn't need to do more chemo.)

Dr M answered that I was in the care of the radiology oncologist. He would order any follow up tests and he would tell me when to call the surgeon to have the port removed. And he handed me a script for Arimidex, told me to start taking this when I am done with radiation. And he wanted to see me in April, four months.

So I asked the radiology oncologist Monday (I meet with him after treatment every Monday) what tests was he planning to do to make sure all is finished, and when could I get the port removal scheduled for? His response, Dr M would order any tests to make sure the chemo and radiation have done their jobs. (Makes sense to me) And Dr M tells you when to take out the port, we have never used it, it isn't anything to do with us. (Makes sense to me)

So I call Dr M. His assistant calls back (it is never him, always the assistant, which makes sense to me.)  She says to schedule the port removal for anytime after radiation is finished.  Dr M doesn't think I need any further tests scheduled. He says, statistically the chemo destroyed any cancer cells that would have spread. The radiation has destroyed any cancer cells left in the breast or node area. Further tests would show nothing. Makes sense to me.

I called the surgeon's office, they need written permission from Dr M to remove the port, he ordered it. Makes sense to me.

A ping pong ball.  I feel like a ping pong ball.

No one wants to take responsibility for the follow up.  What they all say makes sense. What could possibly be left in my body after all this?

It makes intellectual sense, What about my emotional But What Ifs?

Elementary concept in instilling confidence, don't change you mind mid-stream on decisions. Or if you do, please explain why. I got no explanation.

So what am I learning? To not worry. Not be anxious.  Leave this up to God, He does the best scans ever.  Lift this up to God, release it like a dove flying out of my hand.

With prayer and thanksgiving.

With thanks that I am here right now and He loves me and is guiding me down the path.

For the rest of my life I will be hearing of someone who does PET scans every year, gets MRI's every six months. I will feel a bump on my shin or get tired for two days straight and I will think, Tumor on my bone or leukemia. I will hear of someone dying of cancer, and not want to think about it.

Be grateful.
Have faith this worked.
That I am healed.
That this was God's path, He directed it all.

Faith is knowing something when your senses don't perceive it.

Have faith sister.

Freeze the onions, peppers and sausage

Today I have nothing outside the house until 11:30. I have an endocrinologist appointment then, and afterward the longer radiation appointment where they calibrate for the last eight treatments, called the BOOST.  They are more concentrated radiation, focused right on the spot where the tumor was in my breast. Don't know if they target the node which had a tumor, I will ask.

I am in the alternate bra stage, barely there bra. A light sunburn, the most uncomfortable is the skin underneath the breast where the bra hits, and the armpit where the bra hits. But just uncomfortable. And I am positive the achy and tendon soreness is getting better. It doesn't wake me up in the night aching, YEAH!!! What is a better gift than a good night's sleep.

So I have been given ninety minutes this morning. WHO-EEE!

May I make a comment on our lives, December 9th, 2010.

We are all TOO BUSY! Which makes us all STRESSED OUT!

You know it, and knowing you are juggling too many balls in the air at once adds to your STRESS. Thinking about what to say to who, about who needs what, when can you go there to get that, what to cook, what to buy, what to do!

At this age in life (50 to 60 ish) we all acknowledge we want to:
relax more
focus on friends and family
be present in the moment
laugh more
be aware of our own voice
take appropriate care of our own bodies
deepen our faith in God and our relationship with Jesus

We are beyond having busy-ness be a badge of courage, I think. We know that our value as a person depends not on what we do, but on who we are in our hearts, loved always.

Here's how I look at it. We  know where we want to be going. We can picture the person we want to be. We step on the path. Then we get distracted.

If you could see me now, you would see that I have my hand raised, yes I am the first one in line here, I get distracted., I have good intentions and I think I am pretty good at leaning on God in a crisis. But what trips me up is the day to day focus.

I LET myself get distracted. Do you think sometimes I avoid issues in my life by keeping busy? YES I know I do that.

Silly human being, say those sheep.

Getting cancer can be a redirection of your life journey, says Bernie Siegel. I agree with him. Or any disease or big event. Or you could choose to redirect your life journey just because you think about it and choose too.  MUCH easier than getting cancer now, isn't it?

Remember the verse that came to mind when I sat in the radiologist's parking lot back in April, preparing to go in to hear my biopsy results, when I prayed for something from God to hold on to through this whole journey?

Be still, and know that I am God. Psalm 46:10.

From that, flows everything.

Psalm 23: He is my shepherd, restores my soul, guides me down the path.  Is with me, comforts me, nurtures me, I dwell in his house.

I don't want anyone reading this to feel WORSE about those To Do Lists. Not everything everyday makes us happy. At dinner last week I told Mike and Corey that I wanted to devote one solid day a week again to the college summer baseball league. And each May through August it would be much more. Corey asked, does that make you happy? Good question. Great question. It is an optional thing, as I volunteer. I said, no, it doesn't make me happy, but it makes me feel fulfilled.

So yes, every day I have tried to do one thing towards Christmas. It looks like a huge evergreen tree of tasks each December, so I really think, ask God, set my priorities.  Little by little the Christmas items are happy snowflakes in my life. I don't roast my own turkey, I buy one cooked at Whole Foods, as I don't want the stress of killing my family on Christmas Day with undercooked poultry. For the stuffing, I will saute the onions and peppers and sausage this week and freeze them, and I bought a jar of roasted chestnuts instead of roasting them myself.

These are little shortcuts, but they leave me time to bake Christmas cookies, watch National Lampoon's Christmas Vacation, mall walk, get radiation, write funny tags for the family's Christmas gifts, visit my Dad, and visit friends.

I wish all of you a really joyful time preparing for Christmas. Your gifts to me will be hugs and laughter.

Here or There, plus Radiation Update

I've been asking myself a question, How do I give God the glory? Once I am done with all this stuff, the surgery, chemo, and now radiation, I want to stay the course with God, and while doing that, I want to give Him the glory. Follow His path for me, step by step. Giving Him the glory.

What is glory anyway?

I remember learning ages ago that "to glorify God" was the answer to "Why were we created?"

Isaiah 43:7.. everyone who is called by my name, whom I created for my glory, whom I formed and made
What is glory?

I think of the positive, magnificent, ethereal, bright splendid light and the ultimate of goodness.

A field of Easter Lilies blooming in the pure sunshine.

Light.

A Christmas Tree with the white clear lights.

Singing. Preferably people with good voices, but not necessarily. People meaning what they sing.

Sunshine rays streaming down through a cloud.

What does the dictionary say?

a : praise, honor, or distinction extended by common consent

b : worshipful praise, honor, and thanksgiving glory to God

So, the point is to honor and praise God by everything we do. PHEW, I will need His help on this. Which is the whole point!

Have you noticed that when you are thinking of an issue, you notice it everywhere. I have been thinking of "Giving God Glory." I want to be more transparent, yet not be afraid to act as He wants me to. In this Sunday's sermon, Isaac said he had a professor who said the world was made of two kinds of people, those who enter a room and say, "Here I am," and those who enter a room and say, "There you are."

Which am I?

The second group gets it, they are giving God the glory.

I want to be in the second group...

Remember Elizabeth, Zechariah's wife, mother of John the Baptist. She was a "There you are " person. Think back. She was anciently old (probably my age), and she finally got the wish of her heart, she became pregnant. At six months time, Mary came to visit her. Mary was all exuberant that she was pregnant. Elizabeth, instead of gushing about how SHE was pregnant too, responded with true joy and adoration for Mary.

That would have been hard. I would have said, "You're pregnant, how cool! So am I, and let me tell you how I heard I was preggers..."

BLAAAH... wrong.... 

Wouldn't it be fun to be Elizabeth's friend?  She hears others' news and truly is taken into the moment, sharing their joy or their sadness.

So to glorify God, we are doing the actions on earth to love others as He would. To be present in THAT moment of THEIR lives. I need to keep this as my prayer all day long. How quickly we can forget it.

Here's an example. Of someone who wasn't even present in her own moment. Who was a There You Are person, until she had a crisis....

In radiation therapy, you have the same time of appointment every week day. At 9:45 right before me is an older woman with a portable oxygen tank and a beige hat. She is just a delight. I am 10:00. At 10:15 is a drop dead gorgeous young woman, with the most beautiful elbow length brown hair, always in high heels and with make up on. She only had twenty treatments scheduled (because her breasts are smaller she says) and she always has a smile and something positive to say to me, You are one-third the way there, or, You are looking good today. We have one minute conversations while passing in the hall. She has always been very encouraging and sweet.

Today was her last day, we all knew that. You form intimate yet anonymous relationships in the treatment rooms. The technicians are so so friendly. (Mike and I had our photo in the local paper this weekend, I arrived Monday to see it taped to the wall!) You are going through similar things as the other patients, so you talk. About sunburns and bras and wigs, etc.

I came out of the treatment room and saw the young woman with beautiful brown hair sitting in the waiting chair grumpy. I said, Today's your last day, are you celebrating? She said, No. This weekend we had all our equipment stolen, even my personal computer. Out of our truck. I said, Oh dear. She went on, I'm a singer, and it was all stolen after our gig in Miami. Insurance will pay for it, but it is a pain. Is it her insurance or theirs? I had to rent equipment in the Dominican Republic for next week, and for Philadelphia this weekend. I don't feel like celebrating at all. I am angry. Yesterday I was upset, but today I am angry. Really angry. I will never go back to Miami. I hate Miami.

I stood there incredulous. I wanted to say, Have you not learned ANYTHING? You are alive, you are done with cancer, you are healed. That is just STUFF!

But I didn't. I talked with her a few minutes, the tech came out and listened, waiting for me. I said, Well, in a year you will look back on today and see the irony of it all. I am so sorry this happened to you. I am sure your singing will still be great, and the audiences won't notice a thing.  I don't know what else I said. I ended with, I am so happy for you for your good health, and went in for my #19.

I am wondering who she was. There has been a white stretch limousine in the parking lot, I have noticed the past few weeks. Could it be hers? 

She has been so encouraging of me every day, always saying something uplifting. A There You Are person. But not today. I didn't feel bad for me in the least that she didn't say something to encourage me. I felt so sorry for her that she couldn't see the joy in today that was far greater than having things stolen. Yes, things stolen is terrible. But come on, cancer treatment done? That trumps it all, if you ask me.

I don't want to forget how lucky / blessed / loved / precious I am every day, as are each of us. Someone said, I'm sick of people saying they are 'Over the hill', when they could be thankful they are not 'Under the hill.'

It comes down to being thankful doesn't it?

And how can I be thankful, if I am not still.

For when I am still, I see and feel God's presence in my life.

When I am busy as a bumble bee, I am not looking at Him. I'm just dizzy.

So then, particularly in this advent season, let me "Be still, and know that I am God." Psalm 46.

Only then can I truly love Him by loving others.

Maybe that's giving Him the glory. 

==========================

Notes on how radiation is physically going-

I just finished number 19 of 33.

They are doing IMRT now, which means they do two short x-rays before each treatment, have been doing this all last week as well.  The radiologist comes in, tweaks the settings on the radiation machine called Trilogy based on the two x-rays, and then they zap me. Takes about fifteen minutes instead of two minutes. But they have Christmas Carols playing, and good humored technicians. Today they were teasing K because she had never tasted a Krispy Kreme donut. And they don't laugh if I sing along to the carols. At least they don't laugh in front of me.

On Thursday I have a long appointment to get calibrated for my BOOST radiations, which are treatment numbers 25 - 33. They target the lumpectomy site, which has the highest probability of recurrence. Good idea. I'm all on board for that.

Today was my last day of a real bra. The whole area is sunburned, so from now on it's a Gillian and O'Malley Barely There soft stretchy sort-of-a sports compression bra but lighter. The nurses suggested wearing no bra, but that's not going to happen. You don't want the skin to blister. NO I DON'T.  I am using aloe from a plant morning and night, and a little lavender oil (which is supposed to prevent skin from burning).  Immediately after the treatments I am putting on Aquaphor. The radiation site (from center of my chest around to the back, including the armpit) is red and swollen.

My tendons are still aching in the 'watershed' areas, which means they are the tendons that get the least amount of vascular action and therefore take the longest to rebound after any motion. Upper arm and shoulder, fingers, bottoms of feet, top of thigh and hip. Advil works great, as does the stretching of yoga. This ache is due to the strong antibiotics (Avelox and Levoquin) I have been told, and should fade with time. It is fading with time. Anything that fades with time is okay by me.


Funny itchy rash on right leg knee to ankle. The reason? It was pointed out to me again that my body was given chemo for five months, and unusual things happen. It is going away slowly, cortisone cream helped. 


I am tired, more than normal. I will get more tired over the next two months, I am told. Then it too will fade. I can't drink coffee, I tried it all last week and it makes my esophagus feel raw. I have had gastric reflux issues forever.  So I'm drinking Yogi Tea - ENERGY. It has Kombacha, which gives you some zip. And that is working.  Put up the outside wreaths today, putting up Christmas decorations is proof of energy in my book.


The hair is coming back. How FUN! My head feels like the boys did when they were little and just got a crew cut. The eyebrows are all short and stubby, coming back. YEAH!


Angry Birds put out a Christmas Edition. How fun is that...

At My Kansas

Isn't the internet a hoot. I googled "halfway point across United States" and up came Lebanon, Kansas.
Halfway.
I'm at the Kansas of my 33 radiation treatments.

Will be done Tuesday December 28th. I thought I'd be done before Christmas, but I didn't factor in Thanksgiving and Christmas days off. The last eight treatments are intense booster treatments, where they target the lump site specifically.

How do I feel? Glad to be here, is what I answer. As that is the truth. Wherever I am.

I told Dr. S (radiology oncologist) Monday I was tired. He said, increase coffee. WHAT? I drink green tea. Super Anti-oxidant Yogi Green Tea. His response, this week is the most energetic I will feel for the next two months. Maybe longer. So for the next six months, he says, drink coffee.  I will appreciate the caffeine. He talked about the Christmas flavors Starbucks has, try the Peppermint and Caramel and something else.  Starbucks, here I come....

I am sunburned. Using aloe morning and night, the little cactus sits on my bathroom counter. I snip off an inch or two, slit the sides and rub it on my skin. It sinks right in. They have suggested I use Aquaphor immediately after each treatment, which is mostly petrolatum, so I do. Today or tomorrow I need to buy a cotton bra with no under wire.

My lymphocytes are below normal. I am told to stay away from too many germs. Red blood cells are in the normal range, WAY TO GO GUYS!

No other effects. I am visualizing my lungs, heart and bones in that area being shielded from radiation. The radiology technicians continue to be in such good spirits, very up beat and sensitive to me the patient. Yesterday they were taking extra x-rays before the treatment (again.) After the x-rays, I was lying there in position (hands over head, head tilted to right) for about three minutes, which seems like thirty when you are lying there wondering why they aren't doing the treatment. They came in to tell me we were waiting for the computer to reboot, not that the x-rays were an issue. Just nice to be told.

I continue to be achy in my muscles and tendons. Not the joints. Last two weeks, I woke up middle of the night with my outside upper arms aching. This week it is much better. Top of hamstrings and quads ache if I have been sitting too long. It seems they don't quite recover from motion as normal cells do, like they don't have the blood flowing in and out at a normal clip to remove the lactic acid built up from routine muscle use. That's my theory. Dr. M (oncologist) said this week (yes, lots of doctors visits this week and next) to give myself a full year after chemo for the side effects to subside. okay.

Good news, I am not experiencing any nerve pain. Your prayers worked great guys! This is wonderful!

More good news, to those of you who have been following the saga of our basset hound, she has slept a night in her new crate. She has risen above the horrors of chewing out of the old metal one, forgotten the trauma of the cheeping smoke detector, and goes into her new crate voluntarily. Phew.

Mike and I have started yoga, now twice a week. R comes to our home, we roll out our mats, ting the bells, and flow through our postures. LOVE IT. I feel less achy after yoga.

I continue acupuncture weekly. And daily afternoon meditation. Some days for sixty minutes, some days only ten. Several different CD's of it on my IPAD. Variety is the spice of life.

Exercise every day. I took Sporty for a thirty minute brisk walk at lunch.

Today the first of our Orlando Home Grown Groceries will be delivered. Local and organic.

Had a vegetarian dinner last night for the first time I can remember, Lentil Soup (tumeric, cumin, onion, carrot, garlic, tomato, spinach, chic peas) with bread from Antonios, fresh Manchego Cheese, blueberries. Organic Blackberry Jam bars for dessert.

Who are these people living in our home?  Did aliens take our Mike and my bodies?

Last night Corey practiced yoga and ate with us.  And pointed out that the Jam bars had sugar and butter in them. YES they did, you don't want to shock our bodies, it's baby steps.

I am peaceful, and confident God will lead me to whatever changes and redirections he wants me to make in our lives. We are trying things, some will stick, some not.  How comforting to know he is in charge.

And even more comforting to know he will be with me tomorrow loving me, and with me all my tomorrows. 

And surely I am with you always, to the very end of the age. Matthew 28