Clergygirl Cancer Counsel #5

Community:

We’ve been camping again this weekend.  We arrived yesterday afternoon.  Somehow between setting up and bedtime the ties under our pop-up trailer came undone.  Weather they weren’t secure when Jeremy set it up or one of the kiddos pulled on them.  Anyway….during the night my poor sleeping Elijah (19 months) rolled into the crack and fell right through to the ground.  I knew instantly what had happened when I heard him cry.  I started yelling “he fell out of the camper Jeremy!”  Jeremy half awake ran outside and got him.  He was so upset.  So was his mama.  We both cried.  We got him calmed down and he snuggled up next to me on the safe side the rest of the night. 

How horrible to be sleeping, warm and snug, then all of a sudden “bam,”  you wake up only to hit the hard rocky ground in the middle of the night.  What a rude awakening. 

This was a little how cancer was for me.  I was pretty safe and happy in my warm environment till one day “bam,” you have cancer.  I was just going about my business and then I rolled and fell plummeting into a downward spiral.  I woke dazed and confused.

When Elijah fell, we immediately examined him to make sure he was alright.  We turned the awful lights on and were immediately blinded.  He was crying his pitiful little cry.  Jeremy went to fill his bottle.  Jeremy wanted to turn the lights out but I wasn’t convinsed he was OK. 

I pulled him close to me and kissed, and kissed and kissed him.  I kept running my hand over his head to feel if he had any bumps that might be growing.  Even though I was terribly uncomfortable sleeping on my side with my post-mastectomy body I wouldn’t move because I didn’t want to let go of him.  I wanted him to know I was there.  We didn’t move the rest of the night.

When I took my own cancer fall I am happy to say I had a great community of support to help me.  I’m sure there were times when those I’m close to wanted so bad to hug me and hold me close and erase this misserable stuff that was happening to me.  When my world came crashing down I was in a daze and needed support.

If you are experiencing your own cancer fall right now I want to tell you right now is not the time to be shy.  Hopefully you have a community of support through your family, church or network of friends.  But if you don’t, I would encourage you to find a community that will travel this journey with you.  A church is a great place to start. 

My church family has called, written cards and brought meals.  Many people have offered help with childcare.  They also prayed over me and for me throughout this journey.  Any church you go to should respond in this way.  Call the pastor and explain the situation if you aren’t connected anywhere.  Even if you think religion is hog wash….you still need support. 

Cancer is a horrible diagnosis.  The initial shock is something that cannot really be explained if you haven’t experienced it.  But having a supportive network around you makes a world of difference.  It makes traveling this journey a little less painful.

By the way.  Elijah is just fine.  So am I.  You will be too.

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Clergygirl Cancer Counsel #4

Food for Thought:

You are what you eat.  Not totally, but almost.  Cancer can happen to anyone.  You are not immune.  There are some totally fit, amazingly healthy people out there who have had or currently have cancer.  1 out of 3 people will get cancer in the US in their lifetime.  So to say that eating and staying fit is the answer is probably not the case, but I certainly think it helps.  I want to think my cancer was completely gone after chemo not just because of chemo but because I ate healthy and did other naturopathic options along the way.

Let me introduce you to a word if you don’t know it:  Nutraceuticals

It’s basically the use of foods to keep from cancer and fight cancer, as well as other health issues. 

I’m not a raw foodie yet, but I’m getting closer every day.  The best nutraceuticals of course fruits and vegetables.  All of them have benefits but certain ones are extra beneficial.  Like the cabbage family.  I have something from the cabbage family every day.  This includes broccoli, kale, cauliflower, and the best of the best: brussel sprouts. 

In the book: Foods to Fight Cancer  they discuss a study that involved looking at people who had died….not of cancer….but of other natural causes and they found that some people have cancer and don’t even know it!  The way they had eaten had effected the blood supply to the tumor.  The tumor could not thrive because it didn’t have an adequate blood supply.

So for all my friends who don’t like fruits and vegetables….let me share some ideas that I use on my children.  EAT THEM OR YOU DON”T GET DESSERT!  No really.  We do say that but I also sneak.  There’s a book out there that is called the Sneaky Chef that maybe you should buy so you and your children can put vegetables into your diet. 

Here’s some sneaky things I do:

Shakes:  We have replaced ice cream with shakes.  Now I do sometimes put a scoop in the shake to make it creamier…..but this is a lot less than 2-3 scoops in a bowl!  Considering we divide the blender full between the 5 of us.  I also throw in plain or vanilla yogurt sometimes.  Whatever fruit I have around.  Peanut butter, chocolate syrup, be creative.  And I sweeten with honey or real maple syrup…and even natural sugar sometimes.  The ticket is tasting it FIRST before adding more sweetness.  Some of the things I’ve listed will add plenty of sweetness.  Now here’s what’s hidden inside:  A small handful of spinach, a few pieces of broccoli, a few leaves of kale.  I’m not kidding you!  They don’t know and they can’t tell!  A dessert and nutraceuticals all at the same time!  Can’t beat that!

Now if you’re really daring…..here is a “green smoothie” recipe.  They are so easy.  No cream…..just some water, ice if you like it cold, a handful of leafy greens and fruit of your choice.  Yum….truly….don’t believe me try it!  It might be green but it is very refreshing….and loaded with good things for your body!

I also put a scoop of tomato sauce in the blender with zucchini, carrots or whatever vegi might work and spin it up so my kids don’t know “green peppers” are in the sauce.  Since they will pick them out if they see them.

And one more thing…..I try to always put a tray of a few vegetables out for the kids before dinner with dip.  Then they fill up on vegi’s before dinner.  And quite often I choose one they like and one they don’t as much or one they’ve never tried so they get used to it.

So my counsel here is that your mama was right about eating your fruits and vegetables and if you’re lacking it may catch up to you.  At least if you do get cancer you’ll be healthy enough for the battle.

My New Tattoo

Today I got my “Phoebe” tattoo.  For anyone who is 30 something you can appreciate the tatoo of the world I got at radiology today.  I actually have three of them.  You’d have to look closely, but believe me, they’re there….lol! 

If you weren’t a Friends watcher, you won’t get it. 

Seriously though…..I have three dot tattoo’s on my chest for radiation that starts on the 8th.  They do the tatoos to help line up where the beams of radiation will go.

Doing Better

I’m doing better since I started taking the pain meds again and the physical therapy is helping a bunch!  The therapist confirmed what I suspected…..the big bulge under my armpit is in fact a very tight muscle….which is keeping me from raising my arms fully.  So she showed me how to do some massage and stretching exercises.  We noticed a difference as she did it.  I left feeling great.  I go twice a week and she said its really critical I work on this before radiation because radiation will effect my skin/movement as well.

My Letter to La Leche League

I promised I would write a letter to LLL and well…..I finally did it.  Here it is:

 

Dear La Leche League,

 

I am the mother of three children.  All were breastfed.  The first two were breastfed well past the age of two.  When my third child was about 10 months old I developed a plugged duct.  As a Bradley Method Instructor I thought I knew the tricks to get it out.  I massaged, put a warm compress on, took warm showers, ibuprofen, etc.  When my plugged duct did not go away I sought help from LLL and other internet sources.  My sister is a LLL leader and I have several friends who are LLL leaders so I also sought their counsel. 

 

After a month or so I sought medical help.  My family doctor agreed it looked like a plugged duct.  Same things…..massage, compress, etc.  After 6 weeks I called my midwife and she left a message with the nurse to try lecithin and echinacea.  I tried this and thought it looked a bit better but by two months my breast was swollen, red, and hot.  It had a rash, looked pitted and my nipple was inverting.  I kept looking at web sites but I couldn’t figure out why my breast seemed to have a fever and I didn’t.    

 

My husband finally told me I needed to get in to a doctor again.  This time I insisted (I had called three times and been put off by my Ob/Gyn receptionists who kept asking if I had a fever).  I finally saw a doctor at 4 pm, two months after I had first thought I had a plugged duct.  A week later on February 3^rd I was diagnosed with inflammatory breast cancer.

 

Inflammatory breast cancer will only affect 5-6% of breast cancer patients, but it is very dangerous and very deadly if not caught soon enough.  I am lucky I only let it go for 2-3 months.  After chemo and a double mastectomy I am cancer free.  I will start radiation in a week.  I have met many women who have not been so lucky.  I am horrified when I read how many women think they have plugged ducts while breastfeeding or pregnant.  Most women who get IBC will be either pregnant, breastfeeding or in menopause.  But if a woman gets cancer before the age of 40 it is so much more aggressive.  Catching it early is critical.

 

I realize this is a sensitive issue because in no way do I want to scare women from breastfeeding.  I certainly thought I was at low risk because I breastfed!  But I would ask that you consider including in your literature online, your publications and in the training of your leaders that a plugged duct should not last more than two weeks.  I would strongly urge you to put the symptoms of IBC somewhere on your site and encourage women to seek medical attention if it lasts more than two weeks.

 

I am quite certain you would save lives if you did this.  A woman who I blogged with recently passed away from IBC.  She noticed a plugged duct when she was pregnant but waited till her son was 5 months old to seek medical attention.  It was too late.  It had spread to her upper lymph system.  She had six children.  You can read about punk rock mommy here.

 

LLL was a wonderful resource for me before I had children.  I was considered a champion nurser by the nurses after the birth of my first child because we nursed so well!  I loved going to meetings and require my Bradley students to attend meetings and read The Womanly Art of Breastfeeding.  I recently donated on behalf of my sister who has assisted dozens of women on their breastfeeding journey.  So of course LLL was the first place I looked for help. 

 

Please continue to advocate on behalf of all women by sharing as much information as possible and making sure women have all the information they need to not only breastfeed healthy babies but live healthy lives themselves.

 

Sincerely,

 

Jennifer Starr-Reivitt

Clergygirl Cancer Counsel #3

I’m taking my own advice: don’t try to stick it out if you need the pain meds!

Yesterday I was hurting.  Emotionally and physically.  It’s very difficult to describe the post-mastectomy pain.  My armpits and the back of my arms hurt the worst.  It’s just very uncomfortable.  It’s a numbing, burning type sensation and I’m scared it will never go away.  I have to remind myself I’m only 3 1/2 weeks out from this and I need to be patient.

Besides hurting yesterday I kept looking at things that reminded me of my loss.  We went swimming with the kids last night and as I was getting my swim suit I glanced at my…ugh-hum…unmentionables (lol).  Not that I wear them now that we have three kids…..we’re usually on the quickie route when we are intimate.  Non-the-less I’m sad I don’t want to wear them and how this has effected my desire for intimacy with Jeremy.  I feel sad for him and then I feel guilty even though he doesn’t want me to feel that way. 

Then we got to the beach and of course I looked like a breast cancer patient with my hair and flat breasts.  So I felt self-consious.  But I refuse to mope at home for my kids sake I need to live weather I feel like it some days or not.  And then I just hurt.  The water was cold and it added to my misery so I watched Jeremy romp with the kiddos.

Then she showed up.  This beautiful woman with totally flat breasts.  I watched her play with her kids.  They were such a cute family.  And she was as cute as could be with no breasts.  Seriously.  I really don’t think she had had cancer and there she was to remind me I was not alone with my flat breasts.  And I could still be cute:)

So I’m dealing with alot of emotional issues with the loss of my breasts, I can at least take some pain meds to feel more comfortable.  I’m taking my own advice.

Living

The kiddos have gone to bed,  The sun is setting and Jeremy is playing the guitar in the next room.  It is nice to enjoy the quietness.  We don’t get that much around here.

Today I went for my first physical therapy session at Bronson.  They mainly quized me on what hurt, how I felt, etc.  They measured how far I could lift my arms, movement, etc.  I am really glad therapy is happening.  I’m so determined that I want to get back to normal as soon as possible.  I’m not miserable, but I wake up every morning thinking about the fact that I have to go through another day feeling like this.  The physical therapist and I chatted as he was measuring and discovered I USED to do triathalons and he DOES them now (notice the difference…..lol).  I admitted that now more than ever (since cancer) I want to be more diligent about getting back into swimming and running (the biking not so much).  I’ve been eying the masters swim team in the YMCA brochure….he said not quite yet…..but soon.  I really got the feeling he was looking forward to working with me so I can get back to living how I want to live. 

All along this cancer journey I get the feeling people want me better.  I have yet to meet a person that just doesn’t seem to care.  So if you ever have to take this journey or are starting it and reading this…..there will be many along the way who will work with you, take care of you and want the best for you.

Victory Sign

I hate mass emails.  I get forwarded so many emails.  If you’re known for forwarding mass emails, I’m sorry to say I don’t read them.  I know who you are and I still love you, but I will read the title and I can already tell I won’t read it if it’s of the mass variety.

So my MIL only saves the very best ones for me to read.  But even then she has to call me if she really thinks I should read it…..or anymore watch it.  So today she called me and I reluctantly went to my email.  I was surprised.  I liked it.

It reminded me that God can use the worst of situations.  I wouldn’t have wanted to hear that when I was diagnosed even thought I knew it was true. 

Breast cancer has stolen so many things from me.  So many things that define my womanhood.  My hair (temporary), my breasts (temporary).  I can’t even make a victory sign with my arms anymore (like Sheryl Crow here).  My muscles don’t let me stretch my arms that far. (this I hear is temporary too)

But I am reminded that what makes me a woman is not my hair or my breasts.  My womanhood is found more in the nurturing of my children, my compassion for others, and my character.  And even though I have beaten cancer and want to hold up my arms like Lance Armstrong after winning the Tour de France, I hold tight to victory in my heart through what Christ did for me on the cross. 

Romans 5:8 from the message says this:  “Christ arrives right on time to make this happen. He didn’t, and doesn’t, wait for us to get ready. He presented himself for this sacrificial death when we were far too weak and rebellious to do anything to get ourselves ready. And even if we hadn’t been so weak, we wouldn’t have known what to do anyway. We can understand someone dying for a person worth dying for, and we can understand how someone good and noble could inspire us to selfless sacrifice. But God put his love on the line for us by offering his Son in sacrificial death while we were of no use whatever to him.”

We are never perfect and Christ died for us while we were yet sinners.  We are always in process.  We are always on the journey.  If we had to be perfect we would never make it.   The victory in all of this is that I am so loved.  Jesus stretched out His arms for me on the cross and He stretches out His arms for me now with all my cruddy baggage. 

He’s holding up my victory sign even though I can’t.

My body will never be perfect, my heart will never be perfect, my choices will never be perfect, but I am trying to be more like him through His grace and I know it is by His stripes that He offers me complete healing and perfection.

The video says it way better than me in less words.

http://www.youtube.com/watch?v=RvDDc5RB6FQ

A Funk

I’ve been in a funk today.  Like in that “spotless mind” movie with Jim Carey when he just knows something is missing.  I think I’m beginning to realize something is missing.  And well….a lot of things are missing. 

This morning my MIL left after being with us for three weeks.  I didn’t have to load/empty the dishwasher once while she was here.  Laundry….what laundry?  She also painted my bathroom and did a lot of other grandmotherly things.  She let me sleep in and rest every day.  All those things plus she’s just a good friend and I like having her around. 

Then I realized I had lost Dr. Alfaraz’ phone number.  I looked everywhere.  It was my security blanket.  I’m not ready to accept that I will need to get to know a new doctor.  I’m not going to call him because I know he needs rest and to move on.  I just need to have his number.

Then Elijah got sick.  He was irritable with a gooey nose all morning.  The kind that runs and doesn’t stop.  So now….my MIL is gone, my doctor is gone and my son is sick.  The dam broke.  I wept off and on through the morning.  My mom called and freaked because she thought the worst.  No….just me in a funk again.  I’m having issues moving on again.

I found the phone number.  I programmed it into my phone.  I won’t call.  But at least if I think something really bad MIGHT happen I’ll have the number just in case.  Like what if I have a recurrence? 

That and I’m missing my breasts.  I really do miss them.  I keep trying to act like I don’t, but I do.  I’m tired of being in pain.  I keep hoping for normalcy.  I know people think I look really normal, but what they don’t know is that I have to hold my arms an inch or so away from my sides so as not to rub the scars under my armpits.  And any fast movements hurt.  It hurts when I have to run after Elijah or when I read to the girls and they squirm.  It hurts when I try to reach the crackers on the top shelf.  And Charis cries when I tell her mommy isn’t capable of having friends over today.

Yup, I’m in a funk.  Tomorrow will be better.

Progress

I’m getting better every day.  I can feel it.  The back of my arms and my armpits still hurt.  It is a numb burning pain.  In fact it feels a bit like a bad sunburn.  My oncologist told me my brain is trying to figure out how to respond to the nerve dammage and its getting mixed signals.  I’d really like it to figure it out….and soon!  The scar is still tight.  I feel like I have a rubber band around my chest. 

At times I get sad because I feel like I will never feel normal again.  But then I am reminded that I am cancer free and I quit feeling sorry for myself.  My oncologist has arranged for me to go to physical therapy so I am looking forward to doing whatever I need to do to get full motion back into my arms.  As of now I can’t lift my arms above my head or reach high or across.  I am slowly being able to lift Elijah for periods of time.

Thanks for praying for my recovery!