Unsettled

Two more radiations. Then I take an Arimidex pill (a generic of it) daily for the next five years.

Last night I lay in bed thinking, I should feel like jumping up and down and celebrating. Instead I feel a bit unsettled. What's this all about? Is this strange?

Ever feel like this at the end of a long-term tough time? Unsettled.

Well, first of all I am tired and blistered. Certainly throws clouds into your thoughts.

But here's what I think. I've been fighting a battle against a known enemy, tumor in the breast, tumor in the lymph nodes. We've been using tried and true heavy duty weapons like surgery, chemo and radiation. An arsenal of weapons against a tiny group of mutated cells. Statistically, they had little chance to make it through. eight months of full-on attack.

Now we are approaching a new stage. Putting away those big guns because the cancer cells are gone (standing firm on that one), need to rebuild from the collateral damage done to my healthy body over the last eight months of warfare.

There's no doctor to lead you on this path. You are on your own. Doctors focus on fixing a problem, not on maintaining wellness. I get the arm port out in January, I see the oncologist in April, and the radiology oncologist in April. They think I will have a mammogram in April. They will see me annually for five years. That's it. Slam, bam, thank you ma'am.

It's the change from front line battle under the direction of the five star general, to returning to normalcy making sure to reinvent enough of the structure of everyday life to prevent another uprising.

It's the change from full time eradicating cancer using the tested protocols dictated by doctors, to returning to normalcy making sure I redirect enough of my everyday life to prevent cancer from returning.

I see this, I am now on my own. NO WAIT, not true. Who is always with me, the Lord. Who will speak to me, guide me, promises He will meet my every need? The Lord. Who has been there every step of the way for eight months? The Lord. Who has shown me love, through my family and friends, more than I could have imagined? The Lord.

And what is the ONE thing I need to do? Be still and listen to him. Know that He is God, not me. Trust this in my heart. From the peace of my heart, He will pour out love to others. There's my mission marching forth.

Antioxidants, exercise, meditation, prayer, yoga, being with family, travel, being with friends, cooking, reading, baseball, church, time to be still. These will knit together to form my daily life. The Lord will light the path for me so I will be light hearted. All I need is here. Right here.

Profound Tired

I don't want to complain, because this is

no where

no way

no how

anything like the physical onslaught of chemo.

But I am tired, and I am tired of feeling this unusual tired. Profound tired.

Being two-thirds through radiation is not like being two-thirds getting a pedicure. I can be very impatient in pedicures. When you have five things on your list to hit after this pedicure is finished, all before swooping into your garage like a bat outta hell carrying armloads of packages at once so you don't have to make two trips to the garage. And why is it MY pedicurist has to answer the phone today? Usually this takes forty five minutes and I have already been in this chair forty minutes and she doesn't even have the cuticles done yet and I need to go...

Did I really ever have those internal conversations? Yes, and I will again.  I will try to stop myself and not, but, well, I'm not perfect. You all know that by now!

Getting back to radiation. Two thirds of the way through is fantastic. Then I look up and out. The entire world it seems to me is having a blast. Two weeks before Christmas, decorations are up (they've been up at the stores since Halloween). Bells are ringing (Salvation Army), Christmas carols are playing. My IPAD has three new playlists - 2010ChristQUIET, 2010ChristLENNOX, 2010Christ. The first is quiet peaceful carols, the second is Annie Lennox's new Christmas Cornucopia album, and the third is my compilation of energetic Christmas music (for cooking, walking, energizing.) It is beginning to look a lot like Christmas...

The entire world is out there, laughing and hugging and telling stories. I want to be with them, but I am profoundly tired.

Friday I canceled a festive mall walk after radiation because I was achy and tired. Radiation was long, as the Trilogy machine broke down again (second time), so they moved me to another machine but it took time to recalibrate. I was really grateful they moved my machine, not skipping a day. They canceled most of the other patients. THANK YOU LORD for keeping me on schedule!
After radiation I called Dad, who sounded blue. He sounded blue Thursday too. I think someone needs a little Christmas cheer! He lives in an apartment in an adult community. I warned him I was tired and not very talkative, which is fine with him. So I picked him up, we went to Panera in downtown Winter Park. Saw some festive Christmas decorations, had a nice lunch of soup and sandwich. Then stopped off and bought him a new bedspread. Okay, I can hear you now telling me, You can't buy happiness. I know, I know. But a little spiffing up of your surroundings does help get you a smile or two.

Slept all afternoon. Mike came home, I canceled out on the dinner party we were going to. I just couldn't do it. Feels like I am swimming through water when I move, slow motion. Shoulders and elbows and hands ache. I still think it is my tendons.  Feet are okay (YEAH!) I want to close my eyes, but I don't fall asleep. It's not a sleepy tired, it's a "my body is not functioning up to speed" tired, not feeling just right, and bored. Mind isn't tired. What to eat?  Frozen leftovers. Crucial to have at Christmas time, freezer filled with possibilities. Especially this year.

Saturday started out good, had lunch with Dad and Mike at our favorite Jason's Deli. Went there weekly through chemos, fuzzy memories, good food. No corn syrup. Relaxing afternoon writing the tags for all the family's Christmas gifts. All done. All wrapped (last week) and tagged and all are under the tree. Those to be mailed are mailed. Rested, then got all dressed up for the two parties Saturday night. Only made it to the first one... DARN! I even put on mascara, first time since June; it highlighted that I don't have many eyelashes left. But the ones I had were nice and black!

I wanted to wear a new black dress, but couldn't even imagine putting shapewear over my body. The "bra" I am wearing is a Barely There no wire, no cups, no support but comfortable. Allows for total movement of lymph, and that is good.. The left breast is swollen, but not as much as during chemo. Feels thoroughly uncomfortable to put on a regular bras, even in a cup size larger. So I am wearing this Barely There sports type bra, like a camisole in structure. All one piece. Soft, comfortable. It will work for now.

I am putting on lavender oil and the liquid from two inches of aloe plant every morning and night. My left breast is red, but not overly stinging.  Sunburn. The underarm area is reddish-tan. Uncomfortable but not so bad. So I wore the looser velvet top and pants, with good jewelry. Dazzle them with diamonds and they won't notice the clothing or the wig.

We went next door to the first party. Winter Park held a Boat Parade, the theme of this party. We chatted with friends, went outside to view the flotilla. I had one glass of wine, and nibbled on some party food. We came home after an hour, to put up the feet for a moment and venture out to the next Christmas fete.

I sat on the sofa, my head was spinning.  It was so much noise and activity. I started to shiver. It was weird, I wasn't cold. Just shivering every ten minutes or so. Went and took two Advil, laid on the sofa. Still shivering. A little upset stomach. Feet and hands and arms feeling swollen. This is how you feel tired, like your body just doesn't want to function at normal speed. After fifteen minutes, I knew I couldn't get up and go anywhere. Which is really poopy because I was all dressed up, and really looking forward to seeing friends. Oh so looking forward to it!

Went upstairs, put on the jammies and bathrobe. Rested on the upstairs sofa. Came down, opened the fridge. What to have for dinner. Nothing looked good. I saw the Ricotta Cheese. AHA, how about Ricotta Lemon Pancakes. Easy, light, fast. I also could have gone with an omelette but Mike doesn't like them and I am not making two different dinners in one night. Tonight or ever. This is a recipe from the San Francisco Four Seasons, where Mike's parents had an apartment. Watched The Grown Ups, a funny movie. Good choice Mike.

Isn't it ironic, just at a point where you want support from friends, and laughter, you are so tired, you have to stay home. On the other hand, as my white blood count is low staying home might have saved me from germs. If I had pushed myself and gone to Party Number Deux last night, I might be sniffling or coughing this morning.

I am thinking of how to work out the Christmas schedule so we have all the important activities as a family (church, dinner, etc) and I also get enough rest. I know if I push and get too tired, I will not enjoy Christmas and am more likely to get anxious and weepy. Who needs that?
Christmas is about the gift God gave us so that we can live every moment in God's presence.
He takes us through seasons in our lives.
This is my season to Be Still.
Okay, I get it...

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

Ricotta Lemon Pancakes - for 4 people.

Mix these together:
1 cup flour
3/4 cup sugar
1/2 tsp baking powder
zest of  half a lemon
1 cup ricotta cheese
6 egg yolks
salt

Fold in:
6 whipped egg whites

Cook on griddle, make about 3" in diameter.
These are very delicate. And sweet. We ate with maple syrup.  Why not?

Santa on the Avenue

The radiation technician calls your name in the waiting room, you get up, go through the door, enter the long hall leading to one of four radiation treatment rooms. Of course you stop to change into a gown before going into treatment. 

She's glancing at papers in a manila folder as you walk down the hall. She says to you casually as you walk down the hall, How are you doing?  I reply, I have a situation.

She stops walking, looks up from the papers, looks at me. It's not bad, I say. One of the dissolvable stitches from my second biopsy in August didn't dissolve, it has wiggled out. It's sticking out about an inch.  It's not a big deal, I thought it was a piece of towel lint on me when I was drying off after a shower yesterday, so I went to pull it off and OUCH! It is hooked onto something inside me. After treatment, the nurse snipped it off. That's the end of that story. Don't you like it when a situation ends easily. Boy, radiation is so much easier than chemo. Muscles and tendons still ache, we think that is from the antibiotic during chemo, and from the chemo itself perhaps. Getting better. 

 

Then to Park Avenue to walk with D and S. We bumped into Santa. D and S have been so loyal, walking with me and then having lunch every two to three weeks this whole time (since June.) Keeping up with me, getting me out moving about. Marching through the year, now hearing about the Thanksgiving holiday. Very upbeat and positive. It takes a village to heal one person....

1/3 Done - Thanksgiving

It's Tuesday before Thanksgiving. Everyone is getting ready for the BIG DAY. The newspapers and radio and television are talking about Thanksgiving.  Retail stores are promoting Christmas already, skipping right over Thanksgiving, but that's another story and I understand why they do that.  Doesn't mean I have to like it.

By all the media, I am reminded to give thanks in all situations, which is such a good message I need to hear over and over. How cool is that!

Right now I  feel tired and achy, like I am getting the flu but I'm not. My muscles or tendons are all just exhausted. Doctors tell me I will feel tired through January. I'm ready to feel good now! I overdid it a week ago.  I have been recovering all week.  The radiation area is sunburned, and stinging. As it is swollen, it is a bit uncomfortable getting dressed. Nothing hurts badly, just uncomfortable.

In reading over this, I sound discouraged. Do I want some cheese with my WHINE?  Tempted to erase this entry, but want to be honest. This is tough in a different way than chemo or surgery. It's two marathons, right in a row.  I'm ready to do things. I have things that are my responsibility (thinking my dad, Mac, household stuff), there are things I need to do, and things that are fun to do...

I want to remember this when others are going through a tough time, needing love. When my mother died I was lifted up solidly for a week with visits and notes and flowers from everyone. Which was great. Truly great, showered with kindnesses. It was my dear friends who kept touching base with me after a month or two. I have tried to remember that grieving takes time, to be attuned to my friends over the long haul.  I'm not always good with that...

Those friends and family who are steadfast, well, they remind me of an anonymous saying :
A friend is someone who knows the song in your heart
and can sing it back to you when you have forgotten the words.

We are going to my aunt and uncle's home in Vero Beach for Thanksgiving.  She is my mother's sister. That might be part of my sadness this morning, I miss my mother at random times (she died in 2009.) My aunt reminds me of Mom. Holidays are extreme emotions, missing loved ones that aren't with you, enjoying loved ones that are. Mix in with those emotions the fact that the loved ones who are still with you might drive you crazy, and you have a holiday!

Doesn't the world look a little grayer when you are exhausted?

Neat that I got a gift at my front door this morning, oh boy is it neat. It is nine little wood cut angels from a street market in Prague. Christmas Tree ornaments, each playing a musical instrument. Growing up, we had a "band" of elves as ornaments. I loved them, can remember rearranging them on the tree. You wanted to have them all together, as if they were really playing Christmas carols.We have lost all of them, they were played with by Mack and Corey too. Now I have a band of angels for our tree. YEAH! Thank you D....  Thinking of me in Prague, Bethlehem, Venice, Murano...

Double neat that Mack and Tray are driving to Tray's grandparents for Thanksgiving, and taking my mother's (passed down from HER mother) Chestnut and Sausage Stuffing. It is the BEST.

Today's radiation treatment was two hours long.  Because of the swelling, my tattoos have moved relative to each other so they had to take more x-rays and the radiologist had to recalibrate.

There's discussion in the news right now that the new x-rays at airport security have too much radiation and were too revealing of the person's body. HA, there's not much modesty involved in radiation treatments. And there is certainly lots of radiation.

The people that work there are so upbeat, so sensitive to treating you as a person. They made the two hours of up/ down/ in/ out/ back/ forth so much easier.  The hallways are painted like Florida county landscapes.

So, my prayer requests for today:
1. Thank you Lord for healing me so graciously through the months
2. I ask for patience
3. May your wisdom and your hands guide the radiation technicians
4. Please heal my sunburn, and direct me to see if there is anything I can do to help
5. May my words and attitudes over Thanksgiving weekend show love

=========================
Here's from a friend's email...
For each new morning with its light,
For rest and shelter of the night,
For health and food, for love and friends,
For everything Thy goodness sends.  (R.W. Emerson)

Radiation Day 2 - Tattoos

Well, I didn't get Radiation on Monday, they needed to do another thirty minutes of planning with the computer and red laser beams and x-rays. It isn't with the machine I thought it was. And they needed to give me my five tiny dot tattoos.


I have said I would NEVER get a tattoo.
Never say never...

Tuesday was my first radiation, and today my second. It is as easy as showing up. Mike took me to the first one, which made the occasion even more peaceful and positive.

You put on a gown, walk into the huge treatment room, decorated "county Florida" and lie down on your pillow on the table. The blue triangular bolster is for under your knees. The items hanging on the clothing rack in back are pillows for each patient. They are molded to our heads and necks and arms (arms stretched out over our heads) so we get into the identical position each time. Mine is already on the table for me. The entire radiation machine comes out to me and rotates over me. The blue disk part emits the radiation. First from directly above me (for seven seconds today) and then it rotates with its two square arms to behind my left shoulder and does the second dose (for nine seconds today.)

They drew the radiation field on me on Monday. Yes, I was lying on the table while they were moving the machine and talking, I heard a click and once again the tell-tale smell of a SHARPIE. I said with a chuckle, Are you seriously going to draw on me again with a Sharpie. She said, Yes we are going to outline the radiation field and then take a photo of it. With a Canon Elph camera. I now have the outline of France on my torso. Of interest to me, they are getting the node area under my left arm as well as the left breast. They found a small 0.3 cm tumor in the sentinel node during my lumpectomy, so this gives me much encouragement that they are zapping the remaining nodal area. The cancer cells didn't just jump to the node, they were carried there by white blood cells trying to throw them out. So zap the entire area.

I have five pencil point tattoos. Getting a tattoo hurts. For five seconds each. How do people get a full portrait tattooed? It must really really hurt. These dots are for them to line up the radiation machine each time. Good idea, I am all for accuracy in radiation.

In the waiting room today, two women waiting were lying down sideways on the waiting room sofas. That is being really really tired.  So that will be me in four, five weeks.

The technicians at radiology are absolutely fantastic. Today they switched the music speakers input (which I think are actually on the radiation machine)  from Florida Hospital's soft rock to Kelly's (a technician) workout playlist from her IPOD. During my sixteen seconds of radiation I listened to MC Hammer's, Can't Touch This, while tech Chris danced. Does it get any better?

I continue to be so uplifted by friends. So much. I want to spend more time with friends. It is so fun. I have a radiation appointment every weekday, and want to continue meditating every day and spending time in quiet, some napping still going on. And there is exercise.  Oh yes and taking care of household things, Dad, stuff for Mike's family... But I want to spend time with friends! There just don't seem to be enough hours in each day, which is a good way to feel isn't it?

The Oncologist

The very next day Mike went with me to meet the oncologist, Dr. M. A very different personality that Dr. R. Office larger and more bureaucratic, his demeanor more clinical, not as personal. He often, in talking, would refer to M his assistant, as in, M will do this, or, You can tell M if that happens and she can call in a prescription for you. I guess M does a lot.

He also strongly suggested a lumpectomy, not mastectomy. Same survival rates, less surgery, keep the breast. But said it was up to me.

He said my tumor in the breast is so small (0.9 cm which is less than half an inch) that there is only a small small small chance it had spread outside the breast. But just in case, they would do a Sentinel Node Biopsy while I was under. I said I had heard that. He also was going to order an Oncotype DX of the tumor, to see if it is a high chance it would return. If so, they might do chemo before radiation, even if it hasn't spread. Fine with me, take out what you need, do all the tests you want. Just tell me how to knock these cancer cells out of me, and so far away they won't be able to find their way back.

He drew all this on a white board in the examination room. I found the visit to be an out of this world moment. Here I sit on the exam table, he never touched my breast, only looked at the biopsy report. Mike and he are in plastic side chairs, and we all are looking up at a small white board while he talks about Prognostic markers and Oncotype DX. I felt like I was back in college, learning about Quantum Physics. Certainly not in Orlando talking about some cells in my very own breast that had called a mutiny against their fellow breast cells, dividing too fast and furiously. They were right there in my breast as we spoke. As he spoke. Maybe it was good to keep it all clinical and in the realm of the abstract. There will be enough time in the coming months for these rebellious cells to create real life moments for me.

Called the surgeon to schedule the lumpectomy. Mike is out of town in two weeks for business so we will put it off until the third week. At first I was miffed. Why can't I have it sooner, right away, get this train out of the station and on it's way to Healing? Now I see, this gives me time to get ready. Time has much more importance to me these days.

I am definitely a bit numb. This all seems to be happening to someone else, a third party. Not me.

My thoughts on breast cancer?  I picture pink. Races to raise money for cancer. Pink ribbon symbol. And the implants. I don't know that much about breast cancer. Now I will. Never thought I would get it. Never.