Monthly Archives: May 2009

Confusion to Clarity

There’s no one to pull this together for me.  I want a debriefing.  I’m feeling rather lost right now.  I have a hole still in my chest.  It hasn’t gone away like I keep hoping for.  I keep sending nasty, graphic emails to my doctor in Chicago and he keeps reassuring me, but I just don’t feel reassured.  Well, maybe I do a little, and then 15 minutes later I look at the hole and am reminded of all the fears I have. 

Yesterday it started stinking like a garbage dump.  It progressively smelled worse until I finally emailed him…..again.   And he emailed me….again.   I just don’t know how he can say it’s fine.  It’s a hole the size of a quarter and it goes about an inch or more deep.  All of my friends willing to look have been completely astonished by the magnitude of my wound.  So today….in desperation….I went to a walk in clinic.  They, of course are not wound specialists and prescribed several antibiotics and referred me to the wound clinic.  My theory here is….when all else fails, prescribe antibiotics and make sure you’re covered.  This is not what I wanted to hear.  I wanted them to tell me it looked fine.  He said he thought he saw some infection.  Great. 

What I’d really like is for my family doctor to come back.  You remember he moved West in the middle of my cancer treatment.  So I’ve gone to his replacement a few times, but she’s not my doctor.  I didn’t choose her.  So there’s no one to go to for an opinion here.  So I just got home from the walk-in clinic and cried and cried and cried to Jeremy.  I feel lost.

A.  Trusted family doctor has moved

B.  Oncologist very busy, I’m old news

C.  Radiologist would probably see me because she’s a friend now, but isn’t her specialty.

D.  Have appointment with new recommended family doctor on June 16th but he is behind lock and key, and huge waiting list until then.

E.  Could beg local surgeon to see me, but I get the feeling surgeons are territorial and she might think I’m dumping leftovers on her. 

F.  Dr. Dumanian is way over in Chicago and is super busy too.

So you see.  Where do you go when you are done with cancer and you have a hole in your chest. 

This is also a huge deal emotionally for me because it reminds me of not knowing what to do or who to go to when my breast was inflamed with what I thought was a plugged duct.  I waited around for two months trying to see a doctor and then….wham….it’s inflammatory breast cancer.  I keep having nightmares about the hole becoming infected and getting lymphodema, or spreading and losing my breast again.   And what if, worse comes to worse and it’s cancer again so it won’t heal.  I don’t even want to go there.  But if I’m being honest, I think it. 

So after all else fails….blog.  And then pray and remember there is some One far greater than you who is taking on your burden’s and life’s little snafu’s.  Here’s what 1 Peter 5:6-7 says:

“So be content with who you are, and don’t put on airs. God’s strong hand is on you; he’ll promote you at the right time. Live carefree before God; he is most careful with you.”

I love the way this translation says “He’s MOST careful with you!”  What a great reminder that He is by FAR my most reliable physician.  He is the great Healer!  I suppose by blogging I have just worked my way out of despair.  I guess I know now who pulls it all together for me in the end.

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Please, Don’t Join This Club

Last week I got a call from a woman down the street who I have met briefly.  She was calling to tell me a woman she knows was diagnosed with the same cancer I have.  Whenever I hear this I always think “yea right, whatever” because it’s never IBC.  It’s always something that sounds like IBC, like invasive breast cancer or inter-ductal breast cancer, which are all bad, but they aren’t exactly the same.  Most people do not have inflammatory breast cancer…..which is actually a good thing.  But this time, I’m sad to say I was wrong. 

Another woman, only 38 has been diagnosed.  I spoke with her on Thursday and by Friday she knew she was stage 4 because her bone biopsy came back positive.  If you want to follow along with her journey, she keeps a journal here:

http://www.caringbridge.org/visit/lorihernandez

Many of you prayed me through my cancer journey so I’m sharing this in hopes you’ll do the same for Lori.

And while I’m thinking about it…..if you have been diagnosed with Inflammatory Breast Cancer and you’ve somehow stumbled upon my little blog, I started a yahoo group that is small, but a good place to ask questions.  Please feel free to join us, but to be quite honest, I’d rather you not, that is unless you have to.  This club is really no fun.

Inflammatorybreastcancer-subscribe@yahoogroups.com

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Growing Up

There’s been a lot of growing up over the past few years.  A lot of changes.  Elijah went from 1 to 2 1/2 during my cancer.  My hair came back in more grey.  I went from feeling great at 36 to being asked if Elijah was my grandson only a week ago.   Before cancer I worried about being asked if I was pregnant thanks to the baby belly.  Now I have to wonder how often I will be pegged as Grandma?  Cancer has taught me to dig deep.  To examine my inner strength rather than counting on my outer beauty.  But the challenge is a daily battle. 

Cancer has aged all of us.  It stole time away from my kids that I’ll never get back.  It aged me more than I care to admit.  But more than ever I am thankful for another day with my kids and quiet days to remember what I’ve been through.

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Jeremy and I goofing around right before my diagnosis.  Notice the long hair!

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Meleah helping to shave my thinning hair.  Am I smiling?  I just remember this time as a complete fog.

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At my bye-bye boobs party with a friend.

 

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Me and my formless body and super short hair at Elijah’s second birthday.

 

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Charis and I at her musical.  One month post reconstruction.

 

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Elijah in shock at losing his hair to the summer buzz cut.  How did he grow up so fast.  Look at that figure!  6 weeks post reconstruction.

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A Healing Balm

Everything is “natural” these days.  Our local grocery store has a line of organic options and has recently added “natural” as well. I find it interesting that the coloring and lettering look identical to each other making the consumer even more confused!   Sometimes I think it’s just a gimmick to get us to pay $.50 more a bag for potato chips.  Potatoes are one of the top foods as far as pesticides are concerned so I don’t really think you have any business calling them natural unless they are truly organically grown?   Natural is by definition something that is totally formed by nature.  I don’t think the pesticides on my potatoes are very natural.

When I was diagnosed with cancer I weighed the benefits and risks of the natural options out there.  I know I’m not the only one.  You may have seen on the news recently that another family was considering natural treatment for their son rather than the traditional treatment.    It’s a tough situation, but I’m thankful I had a doctor who encouraged me to do both.  And the truth of the matter is, that some of my chemotherapy medicine was as natural as they come, just at highly toxic levels.  Taxotere, which I got in large doses, came from the Yew Tree, a renewable resource saving the lives of tons of people who are dealing with breast and lung cancer.  I think we need to be careful of throwing out the traditional because we think it’s not natural when in many cases the treatments have evolved from very natural elements.   I was examining the skin creams offered at my plastic surgeons office and wasn’t surprised that the main ingredient was the anemone flower. 

We aren’t the only ones who have sought relief in natural cures.  Years ago, the Old Testament mentions something called the “Balm of Gilead” several times.  The Balm of Gilead, from the Balsam tree, was found in an area of Judea and was highly sought after for medicinal uses and also perfumes.  It was also used by the Egyptians for embalming bodies after death.  I have to think it was pretty powerful stuff to cut the stench of death.  Most often it was used in healing respiratory ailments.  It also must have worked because the prophet Jeremiah likens God to its healing powers, something Judah and the Egyptians were deeply missing. (Judah and Egypt were in cahoots against Babylon who eventually does over take them as prophesied.)  Here’s what Jeremiah says in chapter 46 verse 11.

“Oh, virgin Daughter Egypt,
   climb into the mountains of Gilead, get healing balm.
You will vainly collect medicines,
   for nothing will be able to cure what ails you.
The whole world will hear your anguished cries.
   Your wails fill the earth,
As soldier falls against soldier
   and they all go down in a heap.”

Prophets were not offering the healing message to the people of Judea and so this is what he says:

“Is there no balm in Gilead? Is there no physician there? Why then is there no healing for the wound of my people?” (Jeremiah 8:22).

The wound of Judea was much more complicated than the wound I’m struggling with.  It was a wound dug by a history of rebellion, unbelief and stubborn hearts towards God.  “Cleaning out” this wound would only begin with repentance.  The Israelites needed a balm for the soul. 

As I struggle with my own wound and I search for the right medicine I am reminded that in rocky times and uncertain path’s there is a healer (Exodus 15:26) that is far more powerful than the balm’s I will try.   Pursuit of God’s healing, no matter how small the steps, is never in vain.  I truly believe He will not only respond, but meet you where you are.  

“Spitfire Grill,” is one of my favorite movies. It’s a story of redemption, healing and hope.   I couldn’t find a better clip, but you’ll get the general feel if you watch it.

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Patience

Patience has never been my virtue.

I’m on the verge of emailing my plastic surgeon because I’m petrified I will have this hole in my chest forever.   I remember when I met with my oncologist at U of M before my mastectomies, she was very insistent that the mastectomies needed to be done.  Not on just one, but both.  Maybe in the light of persuasion, she also said “we’ll make you look pretty again.”   I don’t feel very pretty right now.  I feel very, very sad and ugly.  I can live with the scars but I don’t think I want to settle for big hole.  Wasn’t it enough that I had to lose my breasts and my hair and go through all of that.  Everything is healing so well except for this one small piece.  It’s almost as if cancer can’t fully lose it’s grip.  Like I can’t pull away completely.  

It seems so trivial in light of what I’ve come through.  Somewhere right now someone is being diagnosed with cancer.  

“Charm is deceptive, and beauty is fleeting, but a woman who fears the Lord is to be praised,” (Proverbs 31:30).

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Back to Chicago

Why do good things always have to come to an end and bad things seem to drag on forever?

I think there was a part of me that thought this surgery would wrap things up.  Like the final fire-works display on the fourth of July.  I was even thinking I might need to wrap up my blog, considering I wouldn’t have much to say.

But I’m sorry to say the saga continues. 

On Monday my “wound” looked rather weepy.  I won’t go in to details for the squeamish readers, but it looked yucky.  Of course it looked yucky on day #1 as well, but on Monday it reached an all time high.  Finally at about 8 pm on Monday night I insisted Jeremy take a picture to send to Dr. D.   He must get the lovely pictures I send him on his phone because he amazes me with his quick responses.  Jeremy and I joke that he probably gets them while he’s eating dinner.  We get a kick out of that…..oh the life of a surgeon!  Anyway….he said it looked like he needed to clean it out. 

Thankfully my MIL came to my rescue once again and drove up from Kentucky to stay with my kids so I could go get “cleaned out” today.  I’m going to save you to details, but I will have to say it did not hurt.  Thankfully.  It’s just a really horrible sensation.  I talk a lot while he works.  (Another reason surgeons probably use anesthesia.)  I think it’s a nervous habit.  Jeremy showed me his hand after the “cleaning out” and I could see my finger imprints in his hand.

But I made it through.  And I even managed to face my fears and change my dressings tonight.  The hole in my chest is now even bigger.  Lovely.

Pray for healing if you think about it.  (Dr. D. would not give me a time-frame.  I’m thinking it’s because he thinks it;s going to be a while.)

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Clergygirl Cancer Councel: “Save the Skin”

My skin has taken quite an assault through this breast cancer journey.  First I had glowing clear skin through chemo.  I’m not really sure why that was, but for me it must have killed everything including blackheads. 

Then it was the port and my mastectomies.  My first scar lines. 

Then it was radiation.  My radiated area wasn’t just a 4 inch by 4 inch area.  Because it was inflammatory breast cancer and it was in both sides they radiated my chest, back and my neck up to my chin. 

Most recently my skin has taken a beating in my reconstruction.  I have the tummy tuck scar and scars around each breast.  And as far as I’m concerned, I don’t want to spend $15 on a bottle of scar gel from the drugstore when it will only last me a few days.  Seriously, I have that much scaring to deal with. 

I don’t admit to being an expert in skin healing but all of my doctor’s have been amazed at how quickly my scars have healed and how well I fared in radiation. I guess when you radiate that large of an area on both sides they don’t have much hope that you’re not going to blister and bubble.  And guess what…..my skin never broke.  I got red, very red, but my skin stayed clear.  So I’m going to share a few things I have used and am still using as I recover from the reconstruction.     

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Aloe.

Everyone likes aloe for burn relief.  I went for the purest aloe I could find.  I love putting aloe on in the morning because it absorbs quickly and I can get dressed without feeling like my clothes are getting all gooey.  

 

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Turmeric.

You can find a link in the main page sidebar for the use of turmeric during radiation.  Not only is turmeric thought to fight tumors, but it’s good for the skin.  I took capsule form throughout my radiation and started taking it again through my reconstruction for wound healing.

 

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Vitamin E.

Overall well known for scar healing.  I lather this on at night before bed.  It’s also great as massage oil for working to loosen the scar once it has healed.

 

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Comfrey.

I know….comfrey?  If it’s spring where you are, comfrey is starting to emerge from it’s winter slumber.  Since being diagnosed with cancer I have dabbled in herbal healing.  A friend teaches classes near me and made me a wonderful comfrey infused olive oil after my mastectomies.  I used every last drop.   I found a comfrey-aloe salve later and have used that most recently.  You really can make your own if you want, all you need is comfrey leaves, roots and olive oil!

 

 

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Grape Seed Oil.

This is probably my favorite of all of them.  I have a blend of grape seed and vitamin e oil and I use it religiously before bed, and after my shower.  There is lots of research that says grape seed oil protects from skin cancer and aids healing.

Updated:  I’ve added another great skin moisturizer I use here.

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Healing

Yesterday I drove to Chicago for my visit with the plastic surgeon.  My friend Mary came with me.  It made the trip much more enjoyable.  I’m glad she was with me because the doctor did a little picking and it freaked me out a bit.  I had this big scab on the inside of my right transplant.  He keeps reminding me this is the result of not taking muscle from my belly.  So he announces “we’re going to take it off.”  So I say….”you’re going to do what you’re not supposed to do and pick a scab!”  I guess I hoped he would hear my expert opinion and leave it alone but he continued to get his utensils gathered up….and before I could ask “is it going to hurt,” or scream for that matter he had ripped it off.  Why do surgeons do everything so dang fast!  Don’t they know I need time to PROCESS what it about to happen! 

Anyway.  I decided not to look and I knew the visual would be pretty bad.  I announced when I was going to look and then I looked.  Then I told him how absolutely disgusting the big hole was in my chest and I announced to him, “I’m sorry, but I’m going to cry now.”  Choking back tears and trying not to pass out because of the one inch gaping hole in my inner chest I asked him what he was going to do with it.  Well, he says it’s going to heal all on it’s own.  I’m questioning that, but all I can do is wait and see.  I suppose if it doesn’t look good he’ll clean it up.  He said he would a while back so I hope that’s his plan because right now, it’s pretty darn gross!

On the positive side, my dear friend Mary (who has had the similar tram flap) reminded me that some people’ s entire breast transplant doesn’t take and can you imagine that with your whole breast?  She’s right.  It doesn’t seem that bad I guess.  And she kept me busy chatting on the way home so I didn’t have to think about the cavern in my chest. 

Dr. D also said I was the winner of the least seen patient after a DIEP flap surgery.  Meaning…..I’m healing extremely well and have been a low maintenance patient.  That makes me feel better.  He did scold me for trying to run already.  So I guess I need to hold off a few more weeks.  He said three months, but I’m thinking three weeks and it will be OK:)

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Mother’s Day

It’s mothers day and it’s good to be here.  I hate to be dramatic but there was a time I wondered how long I would be able to be mom to my kiddos.  I suppose when they tell you  that you have a rare form of breast cancer that took the lives of 90% of women only 10 years ago, and they stage you at 4 before moving you back to 3, well, it just doesn’t bode well for your outlook.  I was thinking about that this week when I ran into one of the nurses who I met at my first visit to the chemo center.  She was the one who went through all the details of chemo with me and let me know what to expect.  As we sat in the waiting room we reminisced about that initial visit.  We both were teary eyed at that visit.  She’s a mom of 4 and is expecting another little one.  We are the same age.  I knew she was hurting with me back then. 

But this time when we were together we laughed and cried happy tears.  Amazed at what has transpired over the course of 16 months.  She is celebrating today with her kids and I am celebrating with mine.   This morning I got breakfast in bed.  They brought me my favorite orange rolls and coffee.  And I got gift certificates tucked inside homemade heart-shaped cards from Starbucks, Cold Stone and Barnes and Noble.  Hmmmm…..I guess my husband does know what I like…..coffee, ice cream and a good book….lol!

I hope you are cherishing your children today, and delighting in all their little mother’s day creations.

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Pruning and Plundering

It really is hard to move on.   On one hand I’m so glad to be done with cancer.  But I’m really not sure I’ll ever be done with cancer.  It might be gone from my body, but it has left it’s mark in the form of emotional and physical scars.  Life can get busy and I can move on, but I’ll never be the same, for better and for worse.

Yesterday at church the lesson was based in Exodus 12 when the Israelites get their “goods” together and the Egyptians allow them to leave Egypt.  Not only that but the Egyptians allowed them to “plunder” their goods, so to speak, and give them all their silver and gold (nice going away gift, huh!).  It just seemed like such a fitting analogy for me at this place in my life.  I can’t begin to know how hellish life was for the Israelites under Egyptian slavery, but I do know the hellish nightmare of cancer.  I do believe I’m at a pivotal point in my life where God is allowing me to move on, plundering maybe a bit in the glow of recovery and remission, and not only that, He’s allowing me to grasp hold of things that have been so  important to me.  I can’t go into details but he’s opening doors for me in my life that I would have never ever thought He would again and in a way that is truly a gift.   I am reminded that His timing is perfect.  He has allowed me to go without, to walk through the valley, to experience great pain, and experience great sadness.  But He has never left me.  He is pruning me and preparing me.

“I am the true vine, and my Father is the gardener. He cuts off every branch in me that bears no fruit, while every branch that does bear fruit he prunes so that it will be even more fruitful. You are already clean because of the word I have spoken to you. Remain in me, and I will remain in you. No branch can bear fruit by itself; it must remain in the vine. Neither can you bear fruit unless you remain in me.”  (John 15:1-4)

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