A recipe for living with cancer.

I am participating in a program which carefully monitors breast cancer patients for lymphedema. The idea is to identify any symptoms even the smallest early on and treat it before it becomes even obvious to the naked eye and prevent it from becoming uncontrollably awful. There is a numerical scale and if you move 10 points or more you need to address things immediately. What this means is going from not wearing a compression sleeve to wearing a compression sleeve.

In my continuous search for information on cancer, mastectomies, chemo therapy I have now added lymphedema to the list. The internet has been amazing with the quick availability of information but especially lectures from doctors, specilists in field like reconstructive surgery, cancer therapy, lymphedema research, are among the tens of thosands of lectures out there now avaialble to us. For those of us that can remember, think about the hours researching in a library through the Dewey decimal system, books, papers and microfish, remember those crazy machines…I digress.

I found a lecture from Stanford Universitthaty which was tremendously helpful in my understanding and decision making for surgery. And found an equally good series on lymphedema also from Stanford which was helpful in understanding it and towards the end disturbing for the changes lymphedema can cause. I don’t have lymphedema, but want to be prepared just in case.

I had a baseline test done in November and today I had my second test, I went up six points. In discussion with the nurse there are so many variables; was the first value correct and is todays number correct? You cannot have any metal on or in your body as this will change the value and the skin expanders have a bit of metal. I will have another test before radiation therapy starts and will have regular measurements thereafter. Only 20% of breast cancer patients get lymphedema, so once again I am faced with chance and percentages.

When my lumps were first seen, the radiologist was a 98% sure it was cancer. When my chemo therapy was over, the tumors had shrunk 50% and 33%. The oncologist said I have a 90% chance of being cured. Since my tumors didn’t disappear with chemo I need radiation, the radiologist said women in my category who don’t get radiation have a 20% chance of recurrence, with radiation, it goes to down under 5%. Lymphedema, there is a 20% chance I will have it and 80% chance I will not. And the thing about lymphedema as of the 2010 lecture, they don’t know what the risk factors are in getting it.

I am 100% sure of one thing a percentage here a percentage there…this is nuts!

Just Pluck it Out

I went for my CT scan on Friday to “map” the area they will radiate or is it irradiate for my therapy.  The radiation therapist was terrific, efficient and supportive.  Instead of giving me one of those blue and white faded gowns, ties askew, nasty things, saying–take off everything from the waist up, open in the front… she took me over to a rack.  She explained there is a group of women who make these special velcro tops/shirts for radiation patients.  They look like a scrubs top but there are two velcro strips in the front, top to bottom, you simply strip off when you need to have your radiation.  They went from size XS up in lots of bright colorful cotton materials.  She said “choose one and it is your personal top, bring it home and bring it back with you each day for radiation.  Instead of the awful gowns, you’ll have your own shirt.”

What a pleasant change.  I put it on and she did her thing which consisted: on my back under the “machine”, settling my head into a scrunchy pillow, my head turned left, my right arm up over my head grabbing a handle, and then inflating the pillow around my head and neck.  This impression is how I will lay each time I come in for radiation.  She then measured and marked my chest with lines, arrows and dots in different colors.  These marks will be replaced by five tiny dot permanent tattoos exact placement which will be calculated by a group of physicists as to the exact spot to aim the rays.  Geez, if I ever wanted to get a tattoo it wouldn’t be five tiny blue dots, it would be something cool and awesome, maybe a burst of peonies, or a picture of Isabel, or me helping to cut up the elk in Jackson.  But what do I get– five tiny blue dots.  Maybe I can get them to do red…

I get my CT scan and figure in 10 days I’ll start radiation, 6 weeks and I’ll be done with it. Then I can go visit Marge in Florida, and or Revi in Wyoming.

I run a few errands and come home to three messages on my phone.  I figure they are from: Josh driving to a meeting (he always calls when he is driving somewhere), an automated voice telling me to switch electric companies (I get at least two a day of those) and the third would be a toss-up between an automated reminder of another doctors appointment for me or Toms reorder of his meds.  Oddly enough the automated voice that calls to remind him its time to reorder his meds is this lovely female sing-song voice that says…hellooo this is Curascript, its time to reorder your medicine… That is the sum total of phone calls we get on the house phone.  Reason to consider getting rid of that phone, but I like our phone number.  I am sure no one realizes, the phone number is 363-KLEY.  When we moved here the operator who set it up was a funny guy, tried to get 412-KLE-YMAN, couldn’t but said how about 363-KLEY!!

To my surprise and alarm there were two messages from the radiologists office saying he needed to talk to me asap, not a good thing.  I panicked and played the third call.  It was my breast surgeon, not her assistant, but she herself letting me know when they looked at the CT scan they saw…at this moment I held my breath and thought more cancer someplace else…and she continued, they saw the titanium clip marker in the lymph node under my arm. It was apparently not one of the sentinel nodes they removed  (they MISSED it) and they really should remove it before radiation.

Long story short, after discussions with both docs I need to go in to have this one node removed before radiation.  She said they would do it under heavy local sedation and just “pluck it out.”  After this minor surgery, I will need to let the scar heal and then go back for another CT scan and marking and then start radiation which looks like it won’t start until mid March.

How time flies when you are having fun, or breast cancer treatment!

Another day another IV

Today is my Herceptin infusion and it’s the first infusion I’ve come to all by myself. Seemly not a big deal but it’s the small steps and simple things that remind me of how lucky I am on this crazy journey. As I sit and write I am interrupted by two police officers walking into the women’s cancer unit. What would be the first thing to come to your mind as the reason two police would come here?
A parking infraction?
An accident?
Someone died?
They stopped at the front desk and then in walked three more police surrounding a humongous bald man in a mustard colored jumpsuit hands and feet shackled with chains. They walked him into the back and all I could think was hmmm.

Of course prisoners get sick, get cancers and need treatments, but until one walked right in front of me I’d never given it much thought, or any thought. Men, women, children, friends, family, personalities, fighting cancer and thousands of people walking for cancer, but never have I considered being incarcerated with cancer. I cannot imagine getting one of the ACT or Taxetere infusions and then heading back to the comfort of my 6×6 cell-at least the toilet is close.

Food at prisons is not the best and i don’t imagine they cater to your needs should you find what they are serving unpalatable. Nor would they be willing to serve you 6-8 small meals during the day. All in all glad I am free to come and go as I please, drive myself to treatments.
Another day another IV!

Does this Make Me Look FAT?

Some things never change, like our perception of our body.  I have always been overweight heavy thighs, big butt and as I age growing waistline.  I have dieted up and down hundreds of pounds and have been obsessed with the way I look from the waist down.  My breasts and my hair have never been part of this obsession because you can always cover hair, pull it back or wash it quick in the sink if all else fails.  My breasts were always just there, an ok size and shape and neither offensive nor of particular concern.

Therefore I guess it was no surprise when I decided to “go commando,” as Tom likes to say, and not cover my bald head after losing my hair.  Apparently I have a nice shaped head with “no divots” as Brent and everyone else commented.  And caring for a bald head as opposed to a head of hair…incredible, fast, easy and you NEVER have to worry if it looks good! The hardest part was actually losing my eyebrows and eyelashes because this has a dramatic effect on the appearance of your face.  Judy mentioned the word ghost and I realized that is a perfect description of how you look without them.  I would get up each morning and there was a washed out ghostly look to my face and a person who I did not recognize.

As my eyebrows and lashes have come back (eyebrows are really thin, oh well) I look in the mirror and there is color once again and I am starting to recognize the reflection.

Having my breasts removed has also been a bit odd in that I have not “mourned” their loss, but been grateful to have the cancer taken out.  I am alive, what more could one ask for.

After all of this– Tom and I walked out Saturday morning to take a walk in the beautiful weather.  As we walked out the door I turned to Tom and asked, “do these sweatpants make me look fat?”

He looked at me in disbelief and said, “I can’t believe you are asking me if you look fat after going for all these months with no hair.  Are you crazy?”

Some things never change.

Here is a great picture of Tom and me at Elizabeth’s wedding in October.   We are starting to look like twins as my hair grows in! Do you think this dress makes me look fat?  Just kidding!

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Happy Valentines Day-I’m Back!

I have rebounded amazingly in the last two weeks. I am getting stronger, I can do more in Pilates, I am able to walk all the way up to Starbucks, i can walk the dog and I am baking, a lot. My chest is still rather uncomfortable but since I can do so many other things it’s no biggie. I get lost in activities so the discomfort becomes background noise. Working through cancer therapy is the best road…

Valentines Day is one of my favorite holidays to bake because the heart is so much fun to decorate.

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A little red royal icing and I am happy as a clam and could decorate for hours. They are pretty tasty too, here is the simple recipe I use for sugar cookies which is actually a really versatile tarte dough. Its an old recipe from my grandmother from germany that is my go to for so many things. I doubled the recipe and got 5-6 dozen 3″ hearts.
Merbe Tieg Dough. 350 10-12 minutes
1/2 cup sugar
1 stick butter or smart balance (4 oz) room temp
1egg
1/2 tsp vanilla
2 cups APF
1/4 tsp baking powder

Combine sugar and butter and blend till light and fluffy. Add egg and blend, add vanilla, flour baking powder mix until dough just comes together. Divide into two discs, flatten and either use immediately, refrigerate, or even freeze.
I like to roll the dough pretty thin, 1/8 inch. Do whatever you are comfortable with. Place on cookie sheet, you may use parchment or place directly on ungreased pan. Bake 10-12 minutes at 350 until edges begin to brown.
Ice with royal icing, confectioners sugar icing, chocolate icing, sprinkles, have a blast.

They hurt!
Uncomfortable doesn’t cover it when it comes to skin expanders and the addition of more saline. Its difficult to explain the feeling but I think I’ve come up with a few different examples that might ring a bell with most.
There is no incision pain because the entire breast is numb to the touch. According to the surgeon this will go on for a few months. The residual pain from the surgery is caused by the edges of the skin expanders all around where I have sensation and feels like something is sticking me in the chest which it is. I can deal with this, it’s the pressure from the saline expanding the skin that makes me cringe.

Ladies who have breast fed…remember the sensation when your milk came in and your breasts were so uncomfortable, tight, and feeling as if they may burst? The relief came as the baby nursed and relieved the pressure of the milk in the ducts. Well think of that sensation with no relief, no let down, no release, just pressure…oy. I must wear a good sports bra during the day and at night and I sometimes feel like I just want to scream. A couple days before the next injection of saline it begins to ease up….and starts again. Thank goodness only one more.

For you fellas…think about over-eating on thanksgiving or any holiday dinner where you cannot swallow another bite and your stomach feels like it will bust. You are wearing a tight pair of pants and cannot open a button, or loosen your belt, or lay down and relax, your innie belly button has popped out you are so full. It doesn’t digest and you wake up the next day feeling exactly the same way, like your belly will bust. This is how skin expanders feel.

Simple huh!

BTW I will need radiation therapy as it turns out. The radiologist was coherent, smart and logical and everything he said for getting radiation therapy made sense. If there is any sense in irradiating a portion of the body every day for six weeks. Hmmmmm.

cookie

I needed a chocolate fix other than a chunk of chocolate, I needed a cookie!  I found this great Low Fat Chocolate Chocolate Chip Cookie Recipe somewhere, on-line, in a book, don’t remember.  When right out of the oven they were fudgie and soft.  I left them out overnight and they became hard and dry (doh).  I made them again but added a bit more fat.  Here is the recipe as I changed it since I was using up bits and pieces in the frig…one egg, two ends of sticks of smart balance, and used a lot more chocolate “chips” than suggested in the original recipe.

Chocolate Chocolate Chip Cookies      350 for 8-10 minutes

Prep time: 20 minutes                                                                            

Cook time: 10 minutes per trayMakes about 30 2″ cookies

6 T smart balance (original recipe called for 4 T)

scant 1/2 cup sugar –about 7 T (original recipe  1/2 cup)

scant 1/2 cup  light brown sugar (original recipe 1/2 cup of dark brown)

1 whole egg (original recipe 2 egg whites)

1/2 tsp vanilla

pinch salt

1 cup all-purpose flour (can use 1/2 whole wheat or oat or spelt etc)

1/3 cup cocoa powder

1 cup chocolate chips (I used a combination of white chocolate, dark chocolate and bittersweet, original recipe 1/4 cup chips–no way enough chocolate lol)

Combine smart balance and sugars in bowl of mixer and blend until smooth; add egg and vanilla and beat until well blended.  Add dry ingredients, mix well.  Add chips.  Place  1 ” rounded spoonfuls on greased sheet pan (or parchment).  Bake 8-10 minutes until still soft to touch.  Cool on tray 1-2 minutes, then place on rack to cool completely.  Store in airtight container or freeze.

Yum.

The original recipe worked just fine (except not enough chips), and had I not left them out they probably would have been good and soft.  As I mentioned, this recipe was using up bits and pieces of stuff left in frig, and they came out REALLY fine!

Try both!

Read the rest of this entry »

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Tylenol, hand cream, tums, lip gloss, spirometer (don’t really need it) and my iPad.  Now that is a better bed side table!

After my third doctor’s appointment in two days…I wish they would talk to each other. Breast surgeon should talk to oncologist should talk to the plastic surgeon to the radiologist.

Here is the story:
Breast surgeon does sentinel node biopsy, one node has cancer. She says I will need radiation therapy. She tells/indicates this in notes and plastic surgeon suggests based on this information to postpone reconstruction, put in expanders and will do reconstruction 6+ months after radiation treatment has healed. Better outcome all the way around.

Tom wanted to wait until we talked to oncologist for interpretation of node biopsy information before surgery… two scheduled appointments cancelled and none available until after surgery.
Surgery done and appointment with oncologist on the 22nd, and the radiologist the first of February.

Today met with oncologist, he said based on the node biopsy, he would go either way with getting radiation He’s fine if I don’t do radiation therapy, and fine if I decide to. I should talk to radiologist, then decide. Uh huh, I can decide. He gave us stats and studies and it looks similar either way for reoccurrence.

Yes, you guessed it, I could have had the reconstruction surgery two weeks ago and been finished.
I am not saying I am 100% certain I am not going to have radiation, i will wait to see the doc and discuss the decision with Tom and the oncologist; but it is an option I should have been able to chose before surgery.

My guess is the radiologist will suggest radiation, we will see. But I wish these docs would talk to each other!

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Had a wonderful visit and lunch with Ellen and Alice today and it was amazing to catch up. Thanks ladies for the delightful company reminding me I do have a brain and can contribute.

I become so immersed in the minutia of the disease and the pain, recovery and next step, I forget there is life outside my bubble. Bubble though it may be it is all consuming and does take effort to deal with everything thrown at you. As I’ve said before I envy those able to work through this therapy and think of them as true heros.

My niece was recently diagnosed with breast cancer and I know she too will rise from the ashes of despair and spread her wings to succeed at the battle she faces. I expect she will continue to work at her job and I know she will be one of my heros. To those working through, newly diagnosed and mostly to my dear sweet niece I send thoughts, prayers and love. Support is there, grab it with both hands every time you need it.

And when you feel better or just need a jump start from family or friends…call them and ask them to come over…they are being summoned to an audience with the Queen. Long live the Queen!

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