Helping Young Children Cope With Cancer

A few people have emailed me along the way about how I helped my children through my cancer diagnosis and treatment.  I wish I had amazing words of wisdom, but I don’t.  I can only tell you what we did and tell you that our children seem happy and well adjusted. 

Meleah probably took it the hardest, not that she really understood what was going on fully, as she was only 3 when I was diagnosed, but she is very fearful and often tearful.  I try to figure out if this is her personality or a little of both.  She is the one that wants to see everything that changes on my body.  If she sees me changing my clothes, she will say “mommy, I wish you didn’t have cancer.”  And I will remind her that I don’t have cancer anymore, and the scars are left from having had cancer. 

Elijah was only one when I was diagnosed.  He is an amazing little boy and just rolled with the punches.  I wasn’t ready to wean him.  I kept thinking  “just one more time.”  Weaning my last child, because I had to, made me angrier than anything else about cancer.  It stole the way I wanted to parent from me and I knew once it was gone I would neverget it back.  I left to U of M for the first night away from my baby boy, one week after my diagnosis, and I knew I would never nurse him again.  My breasts not only hurt from the cancer but they were engorged and full, and leaking milk like tears of grief and sadness.  It broke my heart and still does.

Charis was the oldest and understood the most.  We were up front with Charis from the start.  She could see that I was emotionally and physically not doing well, so it wouldn’t have been fair not to tell her.  Onemistake we made was reading a book for kids about cancer that we had not read before reading it to her.  At the end, someone dies.  I remember her eyes got very big and she said “Oh…that scares me mommy.”  I’m not saying the discussion of the possibility should never arise.  I just wasn’t prepared for the discussion.  However, I think my response was very sufficient for her.  I said “Mommy is going to do everything I can to get better and I’m going to go to the very best doctors.  They will give me very strong medicine that will make me look very sick, but I’m planning that it will make me better.  If  there is ever a time I don’t think I will make it, I will let you know.  Until then I don’t want you to worry about it.”  And she didn’t.  In fact a few months later when I did look sick and I didn’t have any hair I asked her how she was doing.  I asked her if she ever got scared about mommy’s cancer.  Her response was very wise I think for a 7 year old.  She said “when I start thinking about it and get scared I just run around and play and then I don’t think about it anymore.” 

So I guess my one bit of advice is that you need to be honest with your kids.  But not brutally honest.  We told them that mommy was sick but the medicine would make me sicker before I would get better.  That I wouldn’t look very good for a while.  We kept them ahead of the curve by telling them that my hair would fall out before it actually did.  We included them in the “shaving party” and had them help if they wanted.  (Charis did not enjoy this very much)  We told them early on that I would need to have my breasts removed and we reminded them of it occasionally so they were prepared.  We also told them how there would be a doctor later who would give me new “na-na’s.”  And so it was.  We just kept the lines of communication open and we helped them feel a part of everything.  And thankfully we did not have to prepare them for death, but we would have done that had we needed to do that as well. 

So a few weeks ago I was contacted by someone about a new resource for young children and they sent me a copy of the book.  I have to say that I wish we would have had the book back when I was diagnosed.   Here’s why I would have liked it so much:  There are over 50 pages of different scenarios addressing cancer for younger children so you can make your own book to help your child cope with your specific situation.   There are pages that deal with everything from mommy is having chemo, daddy is losing his hair, grandma is feeling badly but she will feel better soon, etc.  You can take pages in and out of the binder as you need them.  It’s a great resource if someone you love is going through cancer.  The book is called “Someone I Love is Sick.”  You can find more information and resources at their web site here.

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Update on Digger

Well, I’ve been quiet about digger lately so I thought I’d let you know how my post surgical wound is doing.  Sometimes I think it’s not healing at all, like it’s just stuck and not progressing like it should, but there’s a definite sign that it is healing, albeit slowly.  My sign it’s healing is that I don’t need to stuff as much gauze in to the hole.  That, and my hubby and my friend Gwen who is a nurse look at it every once in a while and say “wow” that’s really doing well!  It’s those comments that remind me it’s headed in the right direction.  I remind myself that it has gone from the size of a quarter and an inch and a half deep to the size of a dime and only about a half an inch deep now.  It also has gone from smelling like a garbage dump to smelling like a hospital.  Really weird, but yes, like medicine or something.  It just reminds me of a hospital.  I suppose this is from the saline and gauze I use in it.  But it’s not a smell I really care for.  But I’ll take smelling like medicine over garbage dump any day….lol!

I’d like it to heal completely so I can swim this summer, but I’m afraid the sealing part of this wound recovery is still a few weeks away.  Oh well, at least it’s getting better.

Yoga Moves After Mastectomies

Before my mastectomies I knew I was going to get full mobility back in my arms.  I wasn’t just trying to achieve this, I was determined to reach my goal.  One of the best things I did was get in to physical therapy after the surgery.  Anyone who’s had a “no skin sparing” mastectomy knows you have very little mobility after the surgery.  Even after my reconstruction I was limited, but not like what the mastectomies did to me.  I like to say they got confused and gave me a “boob tuck” rather than a “tummy tuck.”  It took the reconstruction for them to get it right…..lol!  No really, it was needed.  A t-shirt at the “race for the cure” event I went to recently had this on it:  “These are fake, mine were killing me.”  And so it goes.  Mine were killing me so I got new ones.

But the second best thing I did was join the yoga class at the cancer center.  During treatment a wonderful young woman from my daughters school came and brought me a meal.  She shared with me her own journey through colon cancer.  She said that I really needed to check out this class.  It took me a few months, but I finally did it.  It was the best advice I was given during my treatment.  Yoga stretching has given me complete mobility back into my arms.  I would say I am 98% back to normal.  And I’m telling you this only 2 months after reconstruction.  My plastic surgeon reminds me that none of his other patients are this active two months after the DIEP reconstruction and he shakes his head when I tell him how much I’m running. 

I’m going to start a new line of posts dedicated to the yoga moves that have helped me the most.  I’ll put a link so that you can see how it’s done.  My friend told me her mom, who had breast cancer 20 years ago, can only lift her arms to her shoulders.  She can’t lift them above her head.   Don’t settle for this.  I know they give you the “climbing the wall” exercise that helps, but if you only ever do this, it will take you longer to get mobility.  So when you feel recovered from your surgery,  find a yoga class, or check out some of these moves!

Yoga Stretch:  Child’s Pose (this is my favorite, I do this almost daily!)

Prioritizing

Overall my kids have fared pretty well through this cancer journey.  I’m sure they have absorbed more than I think.  But overall, they have weathered the storm nicely.  There have been a few little hitches though.  The results of focus being on mom is starting to rear its ugly head, and I’m thankful that I have the time to deal with those issues now. 

One thing I just knew would eventually sneak up on us were the children’s teeth.  Yes, their teeth.  When Charis had her dentist appointment a few weeks ago, I held my breath and waited for the results.  Gasp…no cavities….what do you mean no cavities!  What a relief.  But within a few days, Meleah was complaining of a tooth ache.  Busted!  So we’ve been to three dentists in two weeks.  We have an appointment with the fourth next week.  My four year old has 8 cavities that lie between all of her molars.  It basically looks like we never brushed her back teeth….and well…..I didn’t for a year because I was too tired to worry about teeth.  So the first dentist doesn’t work on children, but looked and said there was a problem, so he sent us to dentist number two.  He looked at her teeth and said she had cavities on all her back teeth and he wants us to go to the hospital for outpatient work and anesthesia to fix them.  He also lectured me on my reverse osmosis water and lack of fluoride.  I went for a second opinion.  We did the outpatient thing with Charis when she was two and frankly, I won’t do it again for baby teeth.  Not when anesthesiologists cost as much as they do!  (try $800 with deductible and that wasn’t even the fees from the hospital and the dentist!)  So we went to dentist #3 today and he was a very nice man, and they did talk her in to letting them do x-rays.  He said he would do the work in office and do a few at a time.  But later that day a friend of mine told me her experience with this dentist and now I’ve called a fourth dentist.  Dentist #4 fills cavities with a laser.  How about that….a laser.  Supposedly my friends child felt nothing and they don’t need any shots for pain or anything.  We see dentist #4 next week.

Hopefully my lack of concern with my children’s teeth during cancer will not be as big of an ordeal as I fear.  I promise to be more diligent, but I refuse to let those dentists make me feel guilty.  I told each one of them I had cancer and her teeth had not been priority….lol…pulling out that cancer card again!  But they all quit trying to guess how she had so many cavities and quit asking me questions like…..did she have a “sippy cup?”  No, she was a breast fed normal child with a mama who had cancer.

And if you are a mama going through cancer…..I give you permission to not get everything right!  Teeth are important….but your children will survive and new ones will come in even if they rot out of their little heads first.  It’s Ok to prioritize and it’s alright when you go to bed at 6 pm and you know your husband will not remember to have them brush their teeth, but WILL get them to bed safely and on time.  It’s OK to worry about you right now.

Happy Anniversary To Me

Today’s a special day for me.  Today marks the one year anniversary of the end of chemo.  Here are some reasons I celebrate:

1.  I’m not sick, with flu-like symptoms and back pain

2.  I’m not tired

3.  I have hair

4.  And most of all….my cancer is gone! 

Thank-you chemo for killing all the bad stuff and sparing the good.  Thanks to the doctors who followed the right path to lead me here today.  And thank-you Jesus for providing the right medicine and the right doctors.

Bulls-eye

Warning:  Discussion of breast re-CONSTRUCTION ahead, with frequent use of the word nipple….lol…so proceed with caution! 

My mom told me that recently Meleah asked her if she had the little “round things on her nana’s.”  That seems like an appropriate question considering that her mama does not have “little round things.”   We’ve always been very open with our kids along the way about breast cancer.   My breasts are a regular topic of discussion in our home.  I’m not sure what we would have done 20 years ago when people didn’t openly talk about breast cancer.

Last week I started looking in to what it would entail for me to have “little round things” on my breasts.   This is considered the second phase of reconstruction.  Shortly after being diagnosed with breast cancer I  learned the details of nipple reconstruction.  How amazed I was with technology and creativity!  Here’s what they do.  There’s a couple different ways they can form a nipple.  They will either take a patch of skin from somewhere else and kink it up and sew it on, or they’ll just use the skin that’s there already and kink it up.  I will have the later if I decide to do it.  Then the third phase is tattooing.  Yes, they tattoo the color on the nipple.  I’m amazed at the reality of this procedure.  I have seen a completed DIEP breast with nipple and it was amazingly realistic. 

Here are my concerns though.  Several women I know have not gone ahead with the nipple reconstruction.  They have elected to keep their “barbie boobs.” and not worry about adding the nipples.  From my reading, it would seem that there is quite an attachment for we women with our nipples.  You can add a “mound” for a breast but our nipples are distinct, so adding a nipple that isn’t quite the size or placement of the previous nipple or getting the color and having it seem totally wrong can be distressing.  I was already distressed enough by my little friend “digger” on my completed mound, I’m not sure I’m up for nipples that might cause me distress…..lol!

The second thing that concerns me about nipple reconstruction is the whole appearance.   I think I ask my plastic surgeon this question every time I’m in his office: “is there any way to make my flap darker?”   It just seems with tattooing and technology there would be a way to match my skin tones?  You see, my chest is very dark because of radiation.  I have a constant tan.  It seems to be lightening a little bit but just under my breasts there is a line where the radiation starts.  Dr. D took the skin from my belly, which probably never saw the light of day.  So I have headlights….and I don’t even have nipples.  I joke with Jeremy that my breasts actually glow in the dark.  So with the scars circling my breasts, ultra white skin, what if adding nipples makes my breasts look like a bulls-eye?  Seriously.  Dr. D says adding the nipples sort of pulls it all together and my “glowing” will not be quite so bright.   But I’m afraid my breasts might look like a target ad in the end.

While I was looking around for information about nipple reconstruction, I found this very lovely informational segment on the University of Michigan web site about nipple reconstruction.  It had me laughing so hard I fell off my chair.  It was one of those laughing moments that amuses Jeremy so much because I was laughing so hard I was literally crying and couldn’t breathe.  Here’s what it said:

“Nipple and areola (the dark circle around the nipple) reconstruction is completely optional. Some women want only the shape of the breast to fill a bra, and decide they don’t need a nipple. Another option is to apply removable nipples that stick on with adhesive. These rubbery tips are shaped like a semi-erect nipple and the color and texture are quite lifelike.”

Now, if you wear fake nipples, I am so sorry I’m laughing.  If it works for you, then go for it.  Maybe it brings some normalcy to life.  But for me, if I tried to wear these things while Jeremy and I were being intimate, well, you can imagine.  I would be laughing hysterically the whole time.  But hey, if I had these on hand I could decide to wear nipples whenever I wanted.  I could wake up one morning and think “I’ll wear nipples today.” 

Alright, enough about nipples.  I don’t have to decide this today thankfully.

I’m Ready

I’ve had a hard time emotionally lately.   Writing anything spiritual here means I open myself up and I’m afraid it isn’t pretty.  I’m really not quite sure if it’s moving on from cancer or going through reconstruction that has set me off, but I’m struggling.  I asked my oncologist if this was normal, and she said it was “very” normal.  This made me feel better. 

I’m not even really sure how to describe what I’ve been feeling lately.   I think it might have something to do with loss.  Like leaving a job or moving.  I’m wrapping up a part of my life that kept me busy for almost a year and a half.  I lived and breathed cancer.  I grew close to people who treated me for cancer.  Now I’m free to move on.  It’s a little scary.  Everything I fought for, is now right in front of me.  I am free to make plans for the future.  I’ve conquered cancer, but now, can I achieve what I fought for….living fully.  I’m standing at the doorstep and I’m trying to decide if I should take the step I suppose.  But I’m scared. 

Life has really revolved around me for a while now.  My cancer treatment.  My health.  I needed to take care of myself, but now it’s time to move on.  One thing that has become a stark reality in the past few days is how much self-focus I have right now.   This is especially clear since reconstruction.  If you had asked me before my reconstruction, I’m sure I would have told you I would have been happy with semi-even breasts of any size and a flat tummy.  But now their here and I’m being critical.  On one hand, I’m so happy.  And then there’s a part of me that is spending an ungodly amount of time analyzing the finished product.  I’m spending too much time on the internet trying to figure out how I can have more symmetrical breasts, real looking breasts.  I suppose digger doesn’t help. because I’m forced to check-out the girls several times a day and I’m reminded they don’t look as pretty.  Not like the originals anyway. 

I’m so thankful for plastic surgery but for me I need to be careful because it’s gotten me too focused on self.  

Here’s what I read recently in Romans 9:5-6:

“For those that live according to the flesh set their minds on the things of the flesh. But those who live according to the Spirit set their minds on things of the spirit.  For to set the mind on the flesh is death, but to set the mind on the spirit is life and peace.”

So I’m going to try to turn my heart back towards the things God wants me to think about.  Loving Him, living in His Word, loving His people.  I’m going to keep blogging this journey, but at some point I may need to stop to officially be done with breast cancer.  But as long as I’m under reconstruction, I’ll keep telling you about it and how God is molding me, shaping me, and breaking me and all that I am learning through this.  Maybe it will somehow help you. 

One thing that will help me move in the right direction is that I got a job.  It’s in my field, so it’s a ministry position.  I’ll be a part-time pastor here at a local church.  When it’s officially announced I can be more clear about it, until then, I’ll just say I’m excited to be back on the job.  I love ministry and I love facilitating community and seeing lives change when people choose to walk with Christ.   And then, hopefully this fall I will start taking classes towards pursuing a nursing degree.  Many of you know I have a secret hobby of coaching couples in natural birth and I also love that.  I am hopeful that down the road I can combine my ministry and midwifery in missions oversees.  But I’m taking steps, and hoping God makes it clear exactly how he wants to use me because I’m ready.

Strawberries

We went strawberry picking today.   I found out about this great little organic farm out in Battle Creek called “Patch and Pasture.”  I’d love to send you to their web site but they don’t have one.  So if you live in Southwest Michigan and want untreated strawberries you can call them:  (269) 964-3942.  The kids were so excited to go and that lasted all of about 15 minutes in the sun.  Jeremy and I did most of the picking while the kids ate and whined.  If you look close at the bottom picture you will see three sour faces….lol!

Last year I was too sick to any canning.  In fact, this week marks the anniversary of my last chemo. 

 

 

 

 

 

 

Support Relay for Life

Well,  I’m going to be walking in my first Relay for Life next weekend.   Last year I had a great experience taking Charis and finding the luminaries someone donated on my behalf.  I don’t know if you remember but as we drove down to Schoolcraft, we saw a full rainbow.  It felt like God was giving us a sign of hope for things to come. 

https://clergygirl.wordpress.com/2008/06/29/a-promise/

I remember feeling so overwhelmed as I walked around with Charis that night.  Not wanting for Charis to see me cry, I had to fight tears a lot that night.  I was on the verge of finishing chemo and wondering if it had done it’s job, and I remember feeling so grateful to all the people who have taken the time to help me get better…..even the ones who just walk and raise money once a year for cancer research. 

So this year I’m joining in.  If you want to help me make an impact, you can go to the donation page listed below.  Thanks.

http://main.acsevents.org/site/TR/RelayForLife/RFLFY09National?px=11083775&pg=personal&fr_id=14518

Dressing Up

Today I decided to take the girls to the city with me.  We did one of their favorite things to do:  dress-up.  I had bought another dress (I told you I’m on a dress kick), so I decided to wear it.  The girls went crazy oohing and aaghing over me in my dress.  How good does that feel to have your daughters think you look great!  Anyway…Meleah came to find me later in the bathroom and asked me to hold her.  So I picked her up and she said “mommy, I just want to hug you because you look so pretty.”  (are you crying yet, because I was).  I always remember thinking my mom was beautiful when I was little (she still is), and it has made me sad at times when they hide from me after my surgeries.  They want to see, and then they don’t want to see.   So it feels really good to feel like my daughters think I look nice. 

When we got to Northwestern we were early.  So we got in to the hospital and walked around to find a bathroom.  Can I tell you how wonderful it was that people were staring at me and smiling.  They were looking at us, not in pitty for a woman wearing a scarf.  Not staring wondering wear my chest went.  But looking because WE looked nice all dressed up on the town.  And most of all we looked happy and we were having fun. 

Dr. Dumanian said digger is healing nicely.  I don’t even need to see him again for several months as long as everything keeps going as they are.  We discussed what needs to happen down the road.  I’m anxious to know how digger heals and if it leaves a big lovely dimple on the side of my breast.  I want to think there is something he can do but I don’t know and he’s not very good at the whole “crystal ball”  thing.   I have tried to coax it out of him but he doesn’t budge….lol.  Lipo, botox, you name it….you’d think he could fix a dimple.  I swear I have more fat in my hips and arms he could stuff in there.  Oh yea…..I don’t want any more surgeries…..sigh.  I guess it’s wait and see.  I think this is actually his approach and he’ll reserve judgement till it’s all healed.  I just like to know my options, as I don’t think I have many that don’t involve saline or silicone.