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Wednesday, April 18, 2012

Still Coming Along

Well we've recovered from fevers and pink eye, but I still have a horrific, drive you crazy dry cough.  Going on two weeks now.  Enough already.  Only have been to the gym twice.  Tried to start stretching and I swear I feel like my side scars are going to completely split open.  I'm 7 months from my first surgery and the tightness of my skin is the same.....tight!  And still numb.  I don't think I will ever get used to how my skin feels.  It's just uncomfortable.  I'm still not able to fully play with Jack.  I cannot run after him, do physical activities.  I'm just not at 100% but I've sort of resigned myself to the fact that bitching about it and being pissed off is clearly getting me nowhere.  This is clearly a marathon, not a race.

A few things have happened in the last few weeks that have weighed heavy on me.  The first, I cannot believe I'm even mentioning but a neighbor that has caused my mom much heartache as well as a rather expensive lawsuit passed away from cardiac arrest.  When I found out I was surprised that I actually felt compassion because this man was really an SOB.  Death, no matter who, is devastating.  He was still a father and husband and the family was mourning.  But at the same time there was a sense of relief.  The constant BS from this man is over.  What came to mind though was the fact that even though he was a pain in the ass neighbor and incredibly disrespectful, especially to women, is that God had already forgiven him and he was one of God's children.  Who knows if this is true, but I've read that when we die we have a life review and we feel all the pain that we have dished out to others.  What was his life review like?

With that being said, I want to think I treat others respectfully but I know that my behavior has been less than stellar.  My recent experiences are no excuse but I have been really, really angry and I cannot handle stupid...stupid people and stupid, insensitive comments.  I find it very difficult to turn the other cheek.  At the same time, people have reached out and I have not handled it with grace.  There is no handbook on how I would feel through all of this.  I tend to retreat then get mad when everyone's quiet.  Sometimes I laugh at myself because how can I still be mad...it's done.  I've had a bilateral mastectomy with reconstruction...it's done!  As my doctor says I'm still in it.  I don't have enough distance from all of this yet.    Anyway, this man's passing was a reminder of God's grace and to treat others the way I would like to be treated, even the stupid one's.    

Two weeks ago when Jack and I were at the walk-in for the second time within two days of each other, this time for 3 hours, we met a woman who was very taken with Mr. Jack.  With 3 hours to kill we talked a lot.  She told me about her 3 boys and pulled out her phone to show me pictures.  After about 2 hours she then told me how she lost one of her sons to a brain aneurysm.  He had a bad headache one night and she gave him Motrin and sent him to bed.  He was 27.  Clearly this woman was carrying around a great deal of guilt.  I never would have known any of this if I had just walked in and saw her sitting there at the walk-in.  Everybody has something.  I would take my situation 10x's over rather than loose my beloved son.  I don't know if it's even possible to recover from that kind of pain and anger.  She ended up taking a picture of Jack because she wanted to share with her family the little boy that reminded her of her son, that had her laughing most of the day.  So again I ask myself, what the hell am I bitching about?  God sends us angels in many forms.  Sometimes it takes a tragic story such as this to remind me, I am beyond fine.  I'm doing great.

Then Easter came and the sermon at church was about FAITH.  There are people with blind faith; there are people that are on the fence; and there are those that don't want to believe or can't believe and they want to "roll the stone back."  I have felt like I am #2, on the fence.  I started taking Jack to church a few weeks before Easter and since because I feel like it's my duty, but perhaps I'm trying to get to the blind faith.  In the church bulletin there is a group starting for parents and children called 'Caring and Sharing.' So I signed us up and we had class tonight.  For just a hour we get to engage with our children then while they tell bible stories, the parents (all mom's) went into another room to discuss what we wanted out of these classes.  I feel like I am returning to the church and I need to find my faith and grace.  I explained that my faith has been in question because of my recent experiences....they asked me to elaborate, so I did.  Then another woman spoke up.  She's 38 and is currently battling breast cancer that has spread to her liver.  She's a mother to young children and has had the same thoughts of all the what if's........She has a tumor but it is shrinking.  Again, I looked at her when she first arrived and I never would have known.  She has had a hysterectomy, which is the procedure I'm dreading and is going through cancer treatments.  She looks great by the way.  Perhaps she will end up being one of my life teachers?

Again, I believe God is placing these people right in front of me.  In fact it's almost smacking me in the face.  My feelings of disconnect from some is still there, but rather than staying closed off I have to open myself up to others that can teach me life lessons.  We all have a story.  We all have something to contribute and share.  We all have things that piss us off.  We all have God, the Light, the Creator, whatever you want to call IT, who is there, we just have to let HIM in.

In closing tonight, I wanted to share with you a few quotes from Marianne Williamson, "A Course In Miracles."

"A miracle is a shift in perception.  Prayer works miracles by shifting our thoughts from fear to love, creating a new set of probabilities.

"Thought is the level of Cause; our mortal experiences are the level of Effect.  By changing our thinking, we change our lives."

Last from James Van Praagh: "There are no good or bad experiences, only experiences that have helped your soul to grow."

Love and Gratitude, Janeen

    

Friday, April 6, 2012

Happy Easter

Just wanted to wish everyone a wonderful weekend. Jack and I have been sick with fevers, coughs and the lovely pink eye! Everyone told me, just wait until he starts school. They were right. Been lying low but he's trying to rebound for the Easter Bunny.

Have a blessed weekend,

Janeen and Jack

Monday, March 26, 2012

Life Lessons..Still Looking

My check up last week went well and I sort of "graduated" as I do not have to go back now for 8 weeks.  Apparently next is the tattooing.  But again my scars look so red and fresh that I cannot image even putting a needle to them in 8 weeks.  Not that I have an ounce of feeling, but it just looks too new, like I need more healing.  So things are shrinking but of course the right side is way down because the graft oozed it's way out.  Again, I have to keep my nipple protectors on, aka my donuts, and I will really try to be diligent for the next several months.  I did get the OK to get back to the gym.  For me this means swimming but I still haven't found a suit to accommodate the donuts and pads and I cannot have anything cling to me....so how do I do this in water?  Still working on it.  I've been sedentary for so long now any tone I thought I had is pretty much gone.  Tough to get toned; easy to get flabby.  My skin still feels quite foreign and tight and I itch like crazy, but I cannot get to the itch.  It's internal and I scratch like I'm clawing myself and I can't get it.  It's so frustrating as it can wake me up out of a sleep or can keep me up for hours.  I know, I know....time!

Regarding my blog, I continue with this for various reasons.  For friends and family to stay apprised of my progress because individual emails and calls can be tough to say the same thing over and over.  And then I see the numbers climb so individuals besides family seem to be reading this, which I do have linked with my twitter account, so perhaps I have a few strangers reading about my journey.  If you are one of these people and facing a similar challenge, I hope you can see that I am trying to remain true to myself and speak my truth.  This hasn't been easy at all but if I can do this, I would like to know you can too.  Lastly, I blog for me.  Sometimes it's like my journal.  I don't think I will ever forget this experience but I also don't want to forget the details.  When I go back and look at entries early on, it's quite emotional and cathartic for me.  I want to always remember but want to make sure this does not become a badge for me.  You know, just one more thing for me to hang my hat on.  We've all been dealt very difficult blows in life but what defines us?  Who would you be without your story of pain?  Sometimes I feel like it's all consuming for me, whether it be childhood/adolescent experiences that as a result I chose to check out from living and just existed for years.  Then I had my baby and it's like I saw things through fresh eyes once again.  Colors were brighter, smells were sweeter, sounds became melodic.  My son changed my life for the better.  Everything my mom ever said to me finally made sense.  Struggles and adversity washed away and I discoveed a newfound happiness.  Then this all hit me.  Why?  I keep saying, "what's the lesson?"  I think I know it...deep down.  For so long I wanted my doctors to play God and give me definitive time lines that cancer would appear.  I was pissed off that this was NOT my plan.  I have felt completely broken through this process but I still hold on to the notion that I am in control here.  And yet what is this blog called....Janeen's Journey As Designed By GOD.  I have no control over any of this.  How can I be so grateful and bitter at the same time?  I can't...the two do not go together.  I also feel conflicted because if I have faith then why am I still so scared?  I find weakness in "letting go."  If I let this go and just be, then I have to let everything else go.  I believe I must go through this to become the person God has intended for me to be.  Pain is pain, it's just how we each decide to deal with it.  My scars, I could really care less about, but it's certainly a daily reminder.  So I guess I will continue to blog if for nobody else, me.  And I will continue to heal both physically and emotionally.  I may have said most of this before but again, it's my reminder.

Again here are some great quotes to end on tonight:

@Oprah_World: There is a lesson in almost everything that you do, and getting the lesson is how you move forward.  It is how you enrich your spirit.

@JulieFrancella: Whatever doesn't kill you makes you stronger...but you will still have to make the effort to shift your thinking and embrace the struggle.

@JamesVanPraagh: Happy am I, healthy am I, holy am I.  Let these words sink into your mind and heart.

And so it is.......Janeen  

 

Thursday, March 15, 2012

My Angels

My "glitch" was stitched back up again and another round of antibiotics.  I'll refrain from details because it's rather gross.  I cried all the way to the doctor Monday and cried most of the way home.  I was thinking of other strong women in my life.

My mom and I have both had a melanoma.  Mom had what we thought was another melanoma on the inside of her heel years ago, which obviously isn't good.  Melanoma is a beyond a horrible cancer.  I was terrified.  Mom was the calming force as she always is and so when I heard the doctor say "possible amputation" I almost passed out.  She said, "Oh I guess I forgot to tell you they mentioned that."  You can only dig out so much of the foot before you no longer have a foot.  We were blessed to have a doctor that slowed everything down and insisted her tumor be biopsied at various hospitals across the country.  Her tumor was a schwannoma which can look like a melanoma initially.  A schwannoma can grow on the nerve sheath and can strangle it, resulting in floppy foot.  Because of other health factors mom's tumor was removed and healed from the inside out.  The wound was so large a tennis ball could fit in there.  While mom still has her foot she was wheelchair bound for over 3 months and to this day still has severe foot and heal pain.  She's thrown out her Prada shoes for TOM's and flip flops.  She's in pain, I think, everyday all day.  She hides it very well.  She's not a complainer at all.  She just gets on with it; whatever "it" is.  She has survived many challenges.

Next, I have a childhood friend who was her mother's caretaker as she was dying from cancer.  In addition to this daunting task, she was continuing her education and even dated and ultimately found her husband.  Her mother was able to marry them in a beautiful and touching ceremony, but didn't live long enough to meet her grandson.  Although I believe Rosa met Gabe long before Jessica ever did.  I don't know how she handled any of this, but she did it with such grace and love.  I respect her greatly.

I have another friend and former neighbor who is currently living with her cancer; 4 years now.  She said she would not let her cancer run her life and while it has made a tremendous impact on her life, she has continued to travel, when possible, continued with her book club, walks her beloved dog, although not as far as she used to, and even exercises when she has the energy.  She looks great and we laugh because one pet peeve is when people tell you how great you look when you feel like shit!  There are days when I see her walking and I'm like damn....You would never know what she's been through.  She's living.

Another neighbor is a 4 year breast cancer survivor.  She was diagnosed when her kids were younger and she found great comfort with her beloved dog Leo who is no longer here; Leo is now at Rainbow Bridge.  Mom would leave a little something at her door or send a random card to let her know she was thinking and prayer for her and her family.  Karin would call to say thank you and you could hear how much pain she was in on any particular day from a chemo treatment.  She lost her hair but still looked beautiful.  I remember one night when us three girls went bowling and just had girl talk...no cancer.

After I got home from the hospital in September my aunt, also a breast cancer survivor, had her friend and manicurist come over to give me a mani and pedi.  This woman survived a brain aneurysm.  Something she should NOT have survived.  She had brain surgery.  She told me her story.  She held my hand and prayed with me.  She says she's not sure why she survived.  But it's clear...she survived so she could help others.  Not only making woman with cancer is the hospital or hospice to look and feel beautiful with some TLC of a manicure and pedicure, but to pray and offer words of wisdom and hope.

So, Mom, Jessica, Bonnie, Karin and Rae.....all of my angels in disguise, I think of you all more than you could possibly know.  I pull from your strength and when I think of your stories, I feel that mine pales in comparison.  I want to run around and enjoy my son and watch him grow.  I want to laugh again so hard that my stomach hurts.  I want to have enough distance that my bitterness simply fades away.  God puts angels in our path everyday.....thank you my angels.

With Gratitude, Janeen

Saturday, March 10, 2012

Small Glitch

Well, I'll be at 4 weeks this Tuesday. I had a routine appointment with Dr. Orringer for Thursday but got rescheduled to this Monday which I am so thankful for now as I have had a situation occur tonight with the right breast/nipple. Don't think the graft is holding. I called him today and he's in San Diego, but told me he'd see me tomorrow Sunday if need be. He gave me instructions as to what to do....mom came over and helped me. I'll give more details later when I figure out exactly what happened and what will be needed to fix this. The right side was always the side that wasn't healing as well as the left, but tonight.....again, infection and rejection are things to worry about. It's like my body may be trying to expel the graft.

I couldn't sleep one night and read many other BRCA blogs and there was a woman who chose her mastectomy with reconstruction using implants. She got an immediate infection, was back in surgery. Had 3 more infections and went 9 months without breasts. This was back in 2010 and sad I don't know the eventual outcome.

None of these decisions are easy. Of course my mind goes to the extreme. What has to be done now? I'm frustrated. I took my medicine as prescribed but there wasn't a pill for bitchy. I just don't think I'm as strong as you all think I am. This last month has not been the most painful but I have about one nerve left. Could it all be worse, absolutely. I try to keep this in mind. I am really disappointed tonight. When is it enough?

J

Wednesday, February 29, 2012

Two Weeks

So I'm just 2 weeks and a day from this second surgery; some days fly by, others go on forever.  My energy level is still not where I want it to be, but what can I do?  The week I got home as I said before Jack was sick so mom took him to her house.  So perhaps this is TMI, but I was home feeling pretty crappy, then I got my period, then I caught Jack's bug, so needless to say I have been rather bitchy.  As mom says, "is it time for your medication yet?"

This garment I have to wear is uncomfortable, so it feels nice to peel it off once in awhile, but then my body does start to hurt and it feels better to put it all back on.  Jack thinks my boobs currently look "gross." But he helps me out of bed because he says, "mommy has new boobies." and he wants to help me.  It's so sweet.  I just wonder if he's telling the kids at preschool about all this?

I know I'm still swollen and it'll just take time (not my strong suit), but I would be lying if I said the right side doesn't have me still a bit worried.  I'm hoping the black I see is just dry blood at this point.  I know this is graphic but I just feel like they are going to pop off like bottle caps.  There is zero feeling and stitches are everywhere so as much as I'd like to clean them up, I know I don't dare touch.

With the second round of antibiotics, the Z-Pack and the other meds I was on, I'm sure this contributed to my stomach being upset and now whatever bug I was fighting is now a head cold.  The doctor said I could start walking on a treadmill this week.  Oh yeah!  Get right on that!  Not that I'll be training for any marathon, but perhaps it would help.

I see Dr. Orringer again this Friday....perhaps more stitches coming out????  Maybe just making sure my right nipple doesn't fall off.  Just kidding!  Jack and I sat on my bed tonight and he helped me cut out my new "donuts."  I can barely cut a circle, so mine don't look great but I found a pair of those padded inserts from an old sports bra.....so I place those over the make-shift donuts and now with a shirt on, you cannot tell what's going on underneath.  I feel so much better that it's not so obvious anymore.  Sometimes it's just those little things that make it better.

I've been taking pictures along the way.  I believe this WILL be a distant memory for me someday, so I want this all documented, which is anther reason for the blog as well.  I do go back and read what I have written; what others have contributed.......it's been quite a journey.  I hope to one day have enough distance from this that I can honestly see every single blessing.  I KNOW they are there, but I have these other emotions that seem to creep in and linger.  They take hold and it's difficult to shake off.

BUT, I have my little man that keeps me laughing......
He thought this was a good idea last night..... 
to look like mommy! 

Love, Janeen

Wednesday, February 22, 2012

Check Up

I had my first post op appointment today with Dr. Orringer. The one downside to having LA doctors is driving back and forth for appointments afterwards. Very uncomfortable. So I got most of my stitches removed and where I had developed hard scar tissue is now duey soft. I am still fairly numb but I did feel some of the stitch removal so I guess that's a good sign. But the major reveal today.....nipples. It was startling to say the least but he did warn me. Dr. O did his happy dance when he revealed my left side, nice and pink. The right....well, he said it looks good. The biggest worries are infection and tissue dying and I thought maybe the right one was dying because parts are black. He said I am past the dying stage and it does have a good blood supply so not to worry, but I am. Again, they are big but they will shrink. He is beyond pleased with how I look because he's done this thousands of times and knows what the final outcome will look like. I have no frame of reference so I can't quite do any happy dance yet. I always feel like my lack of enthusiasm may be mistaken for being unappreciative and this couldn't be further from the truth. I am so glad my doctor understands this. But he had a grin from ear to ear and is just so happy. My right breast that had to be reduced wasn't closed so he removed the stitches and put in new ones. Again he said I was numb and wouldn't feel it, but I did, so again, maybe a good sign that feeling is coming back. I have a little concern for new stitches as I have had another scar once from a basel cell that refused to close that took 3 attempts. But I will try to stay optimistic. Mom and I were surprised at the lack of black and blue those first days but I certainly have many colors going on now. I do look like I've been used as a punching bag. I got new donuts cut out that I have to put into my bra now and here's a kicker....for up to one year. Yup, we don't want my new babies to flatten. I am very self conscious as I thought everyone was looking right at my boobs today. I'll probably feel this way for awhile until I can get to the point where I say "screw it.". I know why they are there.

Anyway the 405 was hell today so I'm glad to be home. My sitter ran Jacks ass off today so I have a tired baby and I am exhausted. Can't wait to change into my other wet suit, fix my new bra and crawl into bed where I can only pull the sheets up to my waist. This is going to take some getting used to. I'm back on meds to prevent infection from my new stitches...and taking Z pack because I feel like crap. I got Jacks bug as does mom. as I seem to finish most posts, this too shall pass.

Exhausting day...good night.

Janeen, Jack and two tired puggies. Thank God!

Saturday, February 18, 2012

P.S. Thank You

OK, I can't count...it's only been 4 days.  I ended my last post abruptly since mom and Jack were coming to pick me up.  Cabin fever has set in.   Jack still has a fever but I'm dying to see him.  So we went for a little drive and Jack ended up throwing up in the backseat just now.  So I was immediately dropped off to my house.  I hobbled in to feed the dogs and get back to bed.  Mom is on her way home to clean up quite a mess.

How do I ever begin to say thank you for all that mom has done and continues to do?  Can we just get a break somewhere?  Having mom with Jack is most important to me right now.  I'll be fine.

I go through these trials and tribulations and think God sure is testing my faith and yet I know HE is doing the most for us all right now.  I believe I know unconditional love.  When I'm hurting and I'm so irritated, I must remember this.

THANK YOU MOM FOR TAKING SUCH AMAZING CARE OF ME & JACK!! WE LOVE YOU!

xo, janeen & jack

5 Days Post Op

Mom always said if you have nothing nice to say, then don't say anything at all.  Well, I'm pretty miserable but here's an update.  The pain I felt in September after the mastectomy was the worst I have ever been through.  With the this surgery, not so much pain but I am incredibly uncomfortable and I know it's made me nasty to be around.  I feel like my body has been used as a punching bag.  Mom and I are both rather shocked at the very limited bruising right now but even if her hand grazes me, it kills.

Let me back up a bit....The night before my surgery I wrote that Dr. Orringer was not going to reopen my abdominal scar and that my new nipples would be the size of his thumb (I meant the tip of his thumb) to allow for shrinkage.  The morning of my surgery as Dr. O was scribbling all over me, he decided he was going to go after the built up scars tissue.  This included my abdomen as well as hardness that had developed around the left pectoral area.  With regards to my new nipples, I received another state of the art procedure using pig intestines rather than using an allograft.  This procedure has been available for awhile now but the company wants Dr. O to start using it in his reconstructions, so this is what I got.

We started promptly at 8 am with Dr. O and his tech "Lizard" dissecting just about every inch of me as I stand there in my birthday suit.  My body looked like a road map.  My IV was started and away I went...again having no real memory of that morning.  The surgery was 8 hours and when I woke up all I could think of was now I had to get dressed, get into a car and back to the recovery house...no hospital stay this time.  I had no idea that I had minimal stitches so everytime I moved or got up, I was drenched in blood and fluid.  I was a mess.  We all got back to Serenity I think after 5pm.  They kept in my IV for hydration until I checked out the following day.  I was so aggravated and pissy when we got back.  I could feel that I was wet but didn't know why.  Again, I was oozing fluid for 24 hours.  I was trying to use the bathroom, fluid dripping all down my backside, wheeling around my IV pole and people standing there watching me.  I wanted to scream, "get the f- out of here, give me some privacy."  Everytime I got up my gown had to get changed and my bed was changed.   My Mom would come in and wipe me down with a warm wash cloth.  Oh I forgot to add, at this time and currently I'm in a get-up that looks very much like a wet suit.  I also have on an industrial strength bra with holes cut out to accommodate the newly designed "donuts" that surround my new nipples so that they do not flatten.

So my surgery included, a right breast reduction to match the left, removal of scar tissue both from my abdomen and chest area, liposuction to flatten out the bulges from the previous reconstruction using my tissue as a transplant, and new nipples.  The liopsuction was aggressive in some areas and that's what is so incredibly uncomfortable right now.  With my other surgery I could at least get in and out of bed and do some things for myself, but because of the attire I must wear, I am at the mercy of others to help...and by others I mean MOM because there is no way in hell anyone else is going to see me like this.  And now we have deja vu.  Just like in September, Jack was sick just before I got home last time.....The second night I got home, my mom took Jack back with her to her house as he was sick with a fever and still is under the weather.  So I'm here, getting phone call updates.  Last night my uncle stayed with Jack so mom could come over and sponge bathe me, clean off all the pen marks, shave my legs, lotion me up and get me back in my wet suit and donut bra.  I know she is running ragged right now.

Please keep us all in your thoughts and prayers......Trying to change my attitude but feeling so beat up makes me aggro.  Jack is a hand full for mom but I'd rather him be with her than anywhere else, especially being sick.  This too shall pass.  GOD give me strength right now.  I need it!!

Janeen  

Friday, February 17, 2012

TGIF

What a week this has been.  I can't tell you where the days have gone but I know it is Friday and hopefully everything will slow down.

Janeen came home on Wednesday evening and I got her settled in at her house.  We had about an hour and a half before Jack arrived with my sister and her husband with flowers, valentines, cupcakes and cookies Jack had made: it was bedlam but Jack was so excited.  Excited to see mommy and excited to show us all he had made.  It was a late night before I got him to bed, and Janeen's and my new living arrangement began.  I had her put her blow up bed in Jack's room for me so as not to disturb her when we were up but she got up anyway.  Needless to say, Janeen is at her house taking care of herself and I am at my house taking care of Jack who came down with a 102.4 fever yesterday.  Need to keep them apart. So I'll be going back and forth between the two houses until Jack gets well.

Janeen is in pain of course but is handling it as best she can without any help.  I will have my sister watch Jack tonight and I will go take care of Janeen.  Get her cleaned up etc., she will feel better and I'm sure not feel so isolated.  Bring her home then I leave her, what else can I do?  I'll spend some quiet time with her and hopefully she will put a smile on that pretty little face of hers. 

I'm sure Janeen will start posting in a few days and let you all know what she has and is still going through. Until then, we're doing OK and we hope all of you are healthy and avoiding that bug that has now caught up with us.

More at a later date..................................................Barb