A recipe for living with cancer.

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Aside

Go Live Your Life and Eat Crumb Cake

IMG_4878

My last post was a year ago, hurry up and wait…I did.  I made it through the waiting for the PT, the sleeve measurements, arguing with my insurance company about the fact they wouldn’t cover the sleeves I had chosen.  I came to terms with my lymphedemia and pushed on awaiting the minor correction surgery for my breasts.  Lets talk about my breasts for a minute.  They are different sizes, uh huh, the brand new, freshly minted, made from scratch breasts are different sizes.  It made me and makes me slightly crazy.  How could you make them DIFFERENT sizes with a blank slate?!  It’s a year after the fact and I still don’t get it.  When I went for my post surgery check up and the doc asked how I liked them…I said they are different sizes.  He had a concerned look on his face and asked “which one do you like, the bigger or the smaller?”  When I answered the smaller a wash of relief poured across his face.  “Good, because I can’t make this one bigger but I can make this one smaller.”  Also I added, the scar for the areola–another whole issue– is not round on the bigger side, it is oblong and bigger than the right side.  If I were to get them tattooed they would look ridiculous.  “Oh I can fix that.”

Another surgery, under local to liposuck out some of the fat from the bigger side and redo the scar.  Am I balanced now?  No.  Still one side is bigger, noticeably, to me,  and I am the one who counts.  When I went for my last post surgical visit to the plastic surgeon he looked at his handy work and with a magnanimous wave of his hand he said, “Go live your life!”

And I was done.

I will never be done.  I look in the mirror each day and do not recognize this body.  The scars are much bigger than I expected, the breasts do not feel like breasts, although I cannot really recall what breasts feel like, not from a tactile standpoint, but from a hanging from my body standpoint.  Bras do not fit correctly, and I am aware everyday that to me, they are still uneven.  I am not alone in this, I’ve spoken with other survivors about the feeling, but most of them are very happy with their results.  I do however question my decision and wonder if I should have just gone flat.  I remember that first day after the bilateral mastectomy looking down at my chest, I took a picture and I was OK with how it looked.  I was OK with thinking I could look like this for the rest of my life.  But everyone talked about the reconstruction, and so did I, and I decided to do it, because I thought that is what everyone expected and that is what I should do…get back to as normal a body image as possible.  But it is not me, when I see the breasts, it’s not me, it is a different me I must get used to one day at a time.  “Go live your life,” I thought that is what I’ve been doing through this whole process…

I will try to switch this blog to more food, for that is my love, baking in particular.  Cancer will always be a part of me, and what I do, but from this point on it will be a small part of this blog.  In living my life this past year I have baked a lot; developed a  protein, fiber, yummy bar I am trying to market; perfected my vegan chocolate cookies; and tried to remain veganish as much as I can.  I do cheat and when I really want -eat dairy, and twice in the last year have eaten some meat.  I still love vodka and chocolate and tequila and traveling and teaching and doing demos.  To kick off my first blog post of 2015 I will share a drop dead fantastic crumb cake recipe I got from a neighbor 31 years ago.   It is perfect with a cup of coffee or a glass of wine and will make these crazy winter days a little happier.  It is easy and has those huge globs of crunchy on the outside soft on the inside crumbs and soft moist cake you love.  The crumbs are twice as thick as the cake and that is using half the crumb recipe.  I say, go live your life and bake a crumb cake!

Crumb Cake   Do not preheat oven!

Serves: 4-8 depending on how you feel about crumb cake
Prepare 9″ square pan with butter and flour

Use 1/2 of crumb recipe for the 9″ square
Recipe doubles well, place in 9×13 pan or half sheet pan and use whole crumb recipe.

Make crumb first and place in frig until needed.
Crumb recipe
3 sticks margarine ( I use Vegan Smart Balance)melted and cooled
Mix in bowl
4 cups flour
2 cups sugar
3T cinnamon
1/2 tsp salt
Add cooled margarine to flour mixture  and mix until crumb forms. Place on top of cake batter in prepared pan.

Cake
2 cup flour
1T baking powder
1/2 tsp salt
Cream 1/4 cup margarine with
2/3 cup sugar
Mix
1 egg
3/4 cup milk
1tsp vanilla

Mix flour, baking powder and salt in bowl set aside.
Cream margarine and sugar until fluffy.
Add dry ingredients and milk mixture alternately.
Beat well and spread in greased floured pan.
Cover with crumbs
Put in COLD oven, set to 350 and bake 30 minutes.
Test for doneness with toothpick and bake longer if necessary.
When cool sprinkle with powdered sugar.

This is easy to make vegan, use soy or almond milk and either an egg substitute or applesauce in place of the egg.  The picture is the vegan version!!IMG_4878

 

 

Hurry Up and Wait!

I love the expression, hurry up and wait.  This has been what I have done for the last two years dealing with Cancer and it’s consequences.  When I first saw my PCP that fateful day in May 2011 and she immediately got on the phone to get me a mammogram, that was the hurry part, then came the WAIT.  The mammogram was done and then there was the wait…someone had to look at it…then I had to wait until the next day until someone else had to look at it and confirm what the first person saw. Then the regular biopsy, MRI biopsy, CT scan, surgeries, hurry, wait, hurry, wait, hurry, wait.  It’s amazing we stay sane at all with all of these ups and downs and worries.

The whole experience has been like this — the first visit to the surgeon…we need to do surgery…but you can go to Japan first because it’s probably taken 5-10 years for the cancer to get to this point so surgery can wait.  Then when I refused to have my lymph nodes removed the surgeon said, well now you have to wait for surgery and do chemo first.  I would hurry to my chemo appointments and have to sit and wait.  See the oncologist…sit and wait.  The nurses giving me chemo never made me wait, they knew, they understood, let’s get this going and over with.

Now I want to hurry, I want to hurry and start PT, I want to hurry and get a sleeve on my arm, I want to hurry before it gets worse and my sub-clinical turns into clinical lymphedema. But I have to wait for the appointments and the measurements and the therapist to call the sleeve maker and then I can get the sleeve.  I don’t want to wish time away, but there is an urgency to all of this, the urgency of being without the tumor, the urgency of getting through chemo, radiation, the urgency of getting the surgeries over with and recovering, the urgency of being healthy again, the urgency of wanting to be done and move on, the urgency of never knowing what tomorrow will bring but wanting to spend it the best way possible.  Whatever that means. Like everything else in life, I just need to wait.

My grandson keeps asking his Mom, when will it be my birthday I can’t wait…she tells him when the trees all have green leaves on them, the flowers are in bloom and the weather gets really warm (July). He can’t wait for his birthday, he wants it to hurry up, for the present, the party, the cake?  Why should he have to wait?  I have had to wait for the painful, the uncomfortable, the disgusting, the depressing, the unnerving, why should he have to wait for the fun and the happy?

Maybe I should just make him a cake and give him a present now because who knows what tomorrow brings while we hurry up and wait.

 

But I Look Fantastic!

Cancer is the gift that keeps on giving, daily.  I was hoping to place Cancer into my memory files and only think/worry about it during annual exams or checkups for minor issues; this has been far from the truth.  I never liked the term survivor, never believed in the term cured and certainly don’t feel like a role model or hero, and Cancer haunts me everyday.  Every morning I obediently take my aromatase inhibitor pill to prevent any estrogen left in this body from growing and reeking havoc.  It is a teeny tiny pill, but one that is uncoated.  Therefore it has a terrible bitter taste when it hits your tongue and I try every which way to get it down without getting that small burst of yuck.  A simple reminder, but still a reminder, but I was otherwise getting into a better place with my Cancer.  And no matter who I run into, they all say I look fantastic!

Then 8 weeks ago my right hand and arm swelled.  I called the Dr.s office in full panic mode wanting to get an LDex immediately.  This is a revolutionary little machine that measures the fluid in both arms and can diagnose Lymphedema at a subclinical level, which is where you want to catch it if you are to get it. They wouldn’t see me until I went to my PCP and she could rule out a blood clot and/or an infection and if I had neither of those then I could come in for a measurement.  This test (totally non invasive and takes 2 minutes) costs $200 each time and most insurance companies do not cover the cost, luckily UPMC insurance does.  I have had 6 of these measurements with a baseline from before any surgery or therapy to after surgeries and today.  Most women, the 35-45% who get lymphedema, may not even know about this test, can’t afford it if insurance doesn’t cover it and will end up with clinical lymphedema, which is painful and requires more treatments than subclinical.

I digress, my PCP found no clot evidence or infection in my right arm and sent me for a “just to be sure” Doppler to show no clot.  Long story short, my right arm was fine but when they did the Doppler on the left for comparison, lo and behold I had a clot in my jugular- probably provoked by my 11 hour reconstruction surgery.  No pain, no symptoms, it is what is called an incidental finding.  What followed — appointments, phone calls with my PCP, Hematologists (yes plural) and arguments with Tom on what course of action to take — he wanted me to take a baby aspirin a day and forget about it.   Final answer:  anticoagulation therapy for three months to be safe… Lovenox shots twice a day (shots of heparin which I had to give myself in the stomach) for three and a half weeks, plus Coumadin daily dosing until I got to the INR number they wanted and, this is the really fun part, blood tests every other day during four weeks until they get my dosage right. I am down to 2 blood tests a week. When I am done, then I get to go on baby aspirin for the rest of my life.  I’ve gotten to know the ladies really well at the blood bank…nice women, Mom would be happy, I’ve brought them homemade cookies!

So while enmeshed in this incidental finding I put off the Lymphedema issue…until today when I went to see the Lymphedema specialist.  The previous 5 LDex tests I have been 100% normal, no fluid, the numbers and I looked fantastic.  My arm has been bothering me, aches, a bit sore and stiff, but I am getting old and these things happen.  Going in this morning that little voice in my head whispered…you don’t have Lymphedema you are just nuts and besides you look fantastic! That same little voice told me I had breast cancer when I found the lump and it also told me I was making a huge mistake doing the reconstruction surgery.  Confusing huh, I am through with that little voice.

So you guessed it I now have been diagnosed with subclinical Lymphedema.  This is where you want to be if you get it…but now the chance of filing Cancer away and not thinking about it every single day is pretty much impossible.  Look, I am still blessed, I am still alive, I still look FANTASTIC, and I probably still have Cancer in some cell hiding out somewhere in my body.  Will this change what I can and cannot do…unfortunately in some areas dramatically.  I now have to do PT, learn to massage my arm, (so does Tom to help) go through some very easy – painless- laser treatments on a scar to try and release the pressure it is putting on my lymph nodes (3 weeks every other day- 8 weeks off- then three more weeks) and wear a compression sleeve  (and possibly gauntlet/glove) every day for the rest of my life.  I cannot: pick up anything over 10lbs. (groceries I don’t care about but my grandkids…), shovel snow, suggested I wear gloves when I do everything, be really mindful when I cook and bake, if I get a cut and it gets red I must immediately call the doc and go on antibiotics and try to raise my arm every hour or so to help drainage, and try not to make myself crazy worrying about it.  This is all to keep it at the subclinical level.

I laughed after the appointment, because that is exactly how it went…10 minutes of what I need to do, what I can’t do and then she said, “but don’t make yourself crazy.”  Really???

Then I got a tad depressed and wanted to eat a bacon cheeseburger, which I am going to do for dinner.  As I have aged and gone through this, I have begun to better understand life and death. I can now understand why my Mom wanted to die after my Dad did.  Why my saying, “but don’t you want to live for your kids and grandkids and great grandkids?” made little difference to her.  She’d been married and dependent on my Dad for 60 years and when he died a large part of her died as well.  I can better understand why my friend Linda gave up living because the illnesses and treatments just got to be too much, to hard, to painful and to limiting.

I am positive and ready to conquer whatever is put in front of me 95% of the time, but today I waivered, I came out of the office charged with being proactive, obedient, and diligent, body aware, new rules of what I can and cannot do  and all those other things for the rest of my life.  You know what I mean, some nights I just want to go to bed and not: exercise (90% of the time I don’t) wash my face, floss, brush, put on hand cream, take my pills and let the dog out.  Now I’ll need to add massage my nodes.

I guess I am complaining, feeling a bit sorry for myself knowing it could be way worse, not wanting to have lymphedema as bad as my Mom and as luck would have it Tom flew out of town so I am having my own private pity party.  It seems every time he goes out of town something else medical comes up for me.  I’ll be fine, it’s just another bump in the road and there are two companies that make outrageous compression sleeves, wild colors and patterns.  I will continue to look fantastic!

Making Peace

Surgery was 4 1/2 weeks ago, November 14.  My DIEP flap breast reconstruction surgery was a complete success.  This is the first time I’ve felt like sitting down and writing.  I’ve written things in my head almost daily since Thanksgiving, but this is the first time I’ve actually sat down to put pen to paper.  Another phrase and process lost  subsumed by technology.

I was very frightened the day of surgery, not for the surgery (although 11 hours of surgery was a scary prospect), but what unfolded in the prep area gave me pause…the IV.  During chemo I rarely had problems with the IV, every three weeks for a year left hand or right.  We are all told to stop eating and drinking by midnight the night before surgery, and I being the totally compliant patient did as I was told.  I probably stopped by 7:30 after dinner.  The next morning I was thirsty and it turns out slightly dehydrated.  My usually wonderful veins were nowhere to be found.  The first attempt at the IV instantly popped a lovely black and blue on my hand and it was all downhill from there.  Attempts in the next 48 hours for blood tests resulted in 9 unsuccessful sticks by four different individuals,  my initial IV failing and 36 hours after that my final IV failing.  Luckily I was going home the next morning and it was decided I could go without an IV for 12 hours–a huge breach in hospital protocol.  One must always have an IV just in case of an emergency just in case you need to go back to surgery.  Luckily I did not.

The first 48 hours after surgery, I must admit I had my regrets, what did I do?  In bed lying in a V shape, head up, knees up to preserve the stomach stitches I had my first viewing of the incision.  The Doc came in and ripped the velcro band from around my mid section and I looked down into a void, a V-shaped gouge  as if they’d scooped out my midsection with a backhoe, or the space after you cut out the first wedge of a lemon.  I mentally freaked.  The Doc said it looked great, and all I saw was a black and red cut from hip to hip.  What would it look like if it didn’t look great? In a post anesthesia whirl and pain med daze I questioned repeatedly,  why did I do this, how could I do this, I am so stupid why didn’t I just go flat.  My first foray out of bed and that capped it, I’d made a mistake.

Bent over at 90 degrees I could not straighten up, and the pain in my lower back felt like the muscles and skin were shredding with each step I took.  That sealed it, I’d made a huge mistake doing this.  But as with everything, the anesthesia left my system, my head cleared, pain meds still made me loopy, I came home and family took care of me and I came to peace with my decision.  I now have two breasts made of my own tissue, a tummy tuck and am very lucky to be recovering nicely.   I am standing mostly upright and slowly getting back to normal.  The scar is still slightly appalling, but that will fade.  The pain is manageable and I am getting around.  I cooked dinner two days in a row and made some cookies, I can’t complain.  And yet again, I am blessed.

 

 

Out of My Control

Tom needs a haircut.  I know this because I can look at his hair and it’s getting a bit messy and long and a bit uneven.  Duh.  When I suggested he get a haircut this week he said he was to busy, he’s going out of town, and he’d try to get it done before surgery next week.

I stopped and thought OMG it’s next week.  Totally consumed with this surgery for the last 10 months I was surprised when a slight shiver when up my spine when he said, next week.  A gnawing sense this is unmistakably a huge decision layered with all kinds of self doubt, self worth and self confidence issues has not been lost on me.   Once again I am in a situation where I have no control.  I have done everything I can to be physically fit and healthy for the surgery, gotten everything in order at home-  OK, not the office, the office is still a mess- and should be fully prepped and ready to go. Stand like Wonder Woman! Be bold, fake it till you make it.

I have been behaving like a pregnant woman during her last month of pregnancy, nesting.  Getting everything ready so we don’t have to think about or worry about things during my recovery. Control, huh.

Get the furnace its seasonal service- check; get the water system outside buttoned up for the winter, check, no un-check missed the guy, reschedule; get a new cleaning lady, check; get out my winter clothes and put away my summer, check; get out winter blanket, check; prep garden for winter, check; bring in last of seasons harvest, almost check, there is still some oregano and thyme out there. I even cleaned the two year buildup of dust and dirt around the motor of the refrigerator.

I have scheduled a cookie baking night and the kids are coming for the weekend and will help with a few other things on my list, so we should be good to go.  I think I am ready, out of control, but ready.

Mom always said do not waste your energy worrying about the things you cannot control and this last year and a half has been one long -out of my control- journey.  This is the final leg and once done I can redirect my energy and thoughts to other things.   Right now, Tom needs a haircut.

Standing like Wonder Woman

Two weeks until surgery and I am starting to get butterflies in my stomach.  I have been anxious and worried but now it’s getting worse.

The whole process of breast cancer therapy is daunting, never-ending (seemingly), a free fall and painful.  It is physically painful and emotionally painful for a long time, and the fear of a recurrence never leaves our consciousness.  The therapy process, once you understand it, is horrific in terms of anticipation and actuation, and yet we all seem to make it through.  Surgery is disfiguring and painful and the loss of a piece of your body inculcates us, we will never be the same, we need to change our body image and if you already have body image issues this just becomes another one to add to the list.  My hips are big, thighs are fat, arms are flabby, my neck is wrinkled, my hair is thin and now my breasts are… are… not there.

The mounds sitting on my chest as a result of a water balloon (commonly called skin expander) inserted and stretched to a size A/B are amorphous numb lumps that neither resemble my breasts, nor have any sensation at all. That is not true, the muscles in my breast are painful and weird in that they hurt and I can feel them move and flex when I do certain movements.  When exercising and stretching the place where the fake skin is attached hurts and pulls. The chest muscles were cut at the bottom and attached to a piece of ‘processed’ skin and reattached then lifted to the skin surface to form a pouch.  The water balloon is slipped in underneath the muscle into the pouch and filled with saline to the size you want, require or desire.

Any sexuality associated with sensation and my breasts is gone and likely will never return, never to what it was.  What will my impending breast surgery afford me once finished?  A facsimile of my breasts that will neither feel, look, nor function as before, although I do not need it to function as a milk station any longer.  They will look like breasts, possibly feel like breasts, but they will not really be breasts, they will be “chunks” of stomach tissue, muscle and fat cut from my stomach area (obviously) and stuffed into the man-made pocket made by the water balloons.  I think a lot about what they will look like, what will it feel like and what scars will remain.  I currently have five-inch scars on each breast bisecting the breast side to side.  I was quite taken aback when I first saw these scars expecting them to be much smaller and not quite so obvious.

I have spent the last year obsessed with breasts, scars, reconstruction surgery, before and after pictures, nipple tattoos, scar tattoos, blogs, websites and reviews of anything and everything to do with breast cancer, breast surgery, reconstruction of breasts and breast outcomes.  To look at my history on the computer one might begin to wonder just what kind of gruesome disturbed person I am looking at all these things.  I’ve watched mastectomy and reconstruction surgery videos over and over to become comfortable with what they will be doing and to better understand the process.  Too much information is not always a good thing.  Now I worry, what if I don’t like them, what if they are still uncomfortable like the water balloons, what if I am making a mistake and should just be flat, what if I don’t make it through surgery, or I have complications, what if what if what if.  I need to go into this surgery with a different attitude, a Wonder Woman attitude of success, instead of a what happens if it is a failure?

Brent told me about a TED talk the other day: Amy Cuddy: Your body language shapes who you are.  It talks about going into a stressful situation and how you go in shapes how you come out.  For example a job interview: go in tentative and uncertain, not feeling adequate for the job and chances are you come out without getting the job.  Go in confident, assured, knowing you can vanquish the world, go in like Wonder Woman and chances are you will get the job. Take a look at the Amy Cuddy video then think of me the day of surgery.  Right before I go in, I will be standing there next to the gurney for 2 minutes, huge blue gown hanging down to my calves-open in the back-attractive paper cap on my head, IV hanging from my arm, gray socks on my feet, hands on my hips, standing like Wonder Woman, ready to vanquish the world!

 

Traveling with Tom

What has changed since my diagnosis with Breast Cancer? Traveling with Tom has changed.  Now able to travel again the tables have turned somewhat and now Tom worries about me.  Are you too tired, can you do this, do you want to do this, be careful, are you hungry? Are you sure comes at the end of many sentences and to most things I answer, don’t worry I am fine.  I am mostly fine, I tire more easily and unfortunately have gotten many more migraines in the last few months than I’ve had in the last few years but other than that I am good to go.

I still worry about Tom.  I watch his step, look at where we are walking, warn him of steps, lunge after him when he doesn’t see a car, look both ways multiple times before crossing a street and watch him during meals.  He still has swallowing issues and chokes so I am constantly saying, are you OK? Do you need water?  He is constantly worried about what I can eat at a restaurant, I always say don’t worry I can always get salad.   I am constantly worried when he eats at any restaurant that he might choke and he always says, I’m fine.

He worries walking to far will tire me out, I worry walking to far he might get tired and miss a step and trip and fall.  It is a comedy of sorts, a loving comedy of concern and love for each other and our infirmities.   In reality nothing has changed, Tom has always been concerned about me, now it just has a medical issue added.  I have always worried about Tom and now it’s knowing what could happen since it did happen and wanting it never to happen again.

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