Monthly Archives: March 2009

An Unusual Prayer

We’ve been telling the kids mommy is having surgery soon.  We are especially trying to help Elijah, who is 2, understand mommy will be gone for a few days. 

This might be backfiring on us.

Charis KICKED a classmate today.  (Remind self….Charis is Charis and I am me…..this is not a direct reflection of my mothering abilities.)

Elijah wants to be held 24/7.  (I am so tired of sitting on the couch watching Dora.)

and Meleah insists on being everywhere I am.  (Can I please take a shower by myself!)

Lordy, Lordy, I sure do need some help right now.

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Whatif

I’ve been a bit stressed lately.  I don’t really know why.  Maybe it’s the surgery coming up?  I’d like to think I’m just totally ready for a tummy tuck and a boob job, but when you know you’ll be in surgery for 10-12 hours, it makes the whole thing less glamorous.  And then the “whatif’s” are there. 

Whatif my transplant doesn’t take and I need a second surgery.  Or worse than that a third or fourth.  Yikes.

Whatif I’m in a whole lot of pain after the surgery. 

Whatif the surgery sets me back months on the progress I’ve made with arm mobility?  I’ve worked so hard to feel this good with physical therapy and yoga….it’s scary to think I might not have that mobility for a while.

Whatif I uncover the bandages and TOTALLY freak.  I suppose it can’t look worse than a double, no skin sparing mastectomy, but hey….it might look pretty bad.  (they call breasts without nipples barbie boobs, but I don’t think mine will look like barbies….let’s be realistic here….lol)

Whatif I can’t stand up strait EVER because my belly is so tight…..OK…..I know….I’m not worried about this……can a belly ever be too tight….hehe!

Whatif…..get ready for the real fears…..the doc goes in and discovers more cancer?

Whatif…..something happens and I’m the 1 in 10,000 chance that something could go terribly wrong, like a blood clot?

I try not to dwell on it too much.  I do think to myself once in a while, “why am I doing this?”  I hope I’m doing it for the right reasons.  I hope I feel a sense of closure and restoration.  I hope I’m not doing this just to look good in a bathing suit this summer (although it will be nice not to be concave in a swim suit and feel like people do a double take at my chest!).

I hope this stress brings me one step closer to normalcy.

Venting

It was supposed to be a simple procedure.  It wasn’t supposed to be emotionally draining.  I’m talking about going to the local Red Cross to donate blood for my own surgery. 

Mistake #1

I’ve been trained by my local lymphedema clinic physical therapists very well.  I will always ask to have my blood pressure taken from my leg rather than my arm.  This is what I’m supposed to do since I’ve had lymph nodes removed from both arms.  I’m supposed to avoid taking blood or any constrictions that my cause lymphedema.

Mistake #2

I have a huge fear of lymphodema.  If you had breast cancer and had lymph nodes removed, you might have done searches on the Internet and come up with this…..or this.  And I’m being nice.  I don’t want to gross you out with the worst picture I can find.  And if lymphodema gets bad enough you might have to walk around in this for weeks or maybe even life.  I’d like to think I’m being unrealistic but the truth is that I could get an infection from a hang nail or I could set it off from a simple blood pressure cuff in the arm.

So I didn’t think I was being too difficult when I asked if the people taking my blood could take my blood pressure out of my leg (all the doctor’s offices do this?) and I asked them if they could be as careful and gentle as they could when they take the blood. 

Well….this opened into a full fledged crisis that left me crying in the end. 

The woman I was talking with got the woman in charge who came over to tell me that was not in the written guidelines for the Red Cross.  It MUST be taken in the arm.  I then told her I would be fine doing the blood pressure in my arm but I admitted to them that I was quite surprised they were so up in arms about taking the blood pressure in the leg.  It is the exact same thing only in the leg.  There are minor variations.  SO I let her know I was fine with it but I was surprised by it and that I may follow up with this very uninformed policy.

So instead of just doing it in my arm she decides to call the director….who is a doctor BTW.  She talks to him and while talking to him she says “He’s wondering if this is a preference or an order by your doctors?”  As far as I’m concerned it’s an order…..so I said such.  Any medical professional should know you should avoid pressure or cutting/poking on an arm with lymph nodes missing.  This is not saying in an emergency it can’t be done….it’s just about avoiding anything that might tip off the early onset of lymphodema.

So then she gets off the phone and informs me that their “guidelines” don’t allow them to take the blood pressure from the leg and since it’s an “order” from my doctors I can’t have blood taken.  Aghhh! 

So I’m getting angry now.  I ask her to get the doc on the phone again.  I won’t go into details but Iwas pretty up front with him.  Basically I said….I’m a mom of three kids, I don’t want lymphedema.  If HE was in my situation he would do whatever he could to avoid lymphedema and that my doctors don’t tell me I CAN’T take the pressure in the arm, but they do tell me to avoid it.”  Finally I convinced the doctor that I could do it out of my arm…..by now I’m in tears. 

I just wanted my dang blood taken so I could have it for after my surgery and I’m being careful about my situation.  I didn’t mean to make it so difficult!

I do not want to harp on the Red Cross because heaven knows they are a wonderful organization, and those nice people are getting my blood to Northwestern to be available for me after my surgery at no cost.  But I think it’s absolutely CRAZINESS that they will not take a simple blood pressure reading in a leg!

Not Cancer!

It’s not cancer!  Yes, I admit I was worried.  I went for the ultrsound today and the lemon sized cyst I have growing on my ovaries is not cancerous.  Yippie….happy dance kindof news:)   I guess it’s just a normal cyst, just a little large.  It will cause some discomfort until it ruptures ….and I guess that will hurt too.  I’m a tad nervous about the thought of being doubledover in pain more….but in some ways I’d prefer it to rupture sooner than later.  My doc doesn’t think this will interfere with my reconstruction in April but I’ll have another ultrasound in 3 weeks right before the surgery.

My doc says my hormones “don’t know what the hell they’re doing” now that I’m done with chemo….I guess they’re a bit confused.  I’d really like them to figure it out soon.  Normalcy please.

Feeling Yucky

I’m having a flashback of those tired, uncomfortable days of chemo.  Late last week I started to feel….well….not so good.  On Monday I started what I thought was my period, but I had one only two weeks ago so it didn’t make sense.  I then realized I had a ruptured cyst….I think.  So I was feeling better and then last night I felt way worse.  This morning I spent some time doubled over.  I sent Charis off to school today on foot.  I usually drive her but I didn’t think I’d make it.  I’m hanging out in my bath robe with Elijah on my lap.  Meleah has dressed herself and amazingly enough actually matches today.

Here’s my frustration.  Remember how I had to deal with my Ob/gyn office for two months before they saw me about the plugged duct that was actually IBC?  Well they’re doing it again.  I love my doctor which is why I stay….but the receptionist are….well….I can’t say it.  I’m not sure what constitutes an emergency at this office but doubled over pain, unexplained bleeding or a swollen feverish breast DOES NOT seem to make the cut!  Arghhhh!  If they don’t call back in the next hour I’m going to my oncologist.  She is way busier but will not ignore me!

I’ve come across another dear young woman who is going through chemo for triple negative breast cancer right now and having a hard go of it.  You might want to check her out.  Her name is Sheri.  Say a quick prayer for her if you think about it.

Survivor

I started taking yoga at the cancer center a few months ago.  As I was leaving class after my first time I was chatting with a few other women.  Talking with another woman about having breast cancer she said “Oh….I’m a real survivor, I hit my five year mark last month.  Some women think after a year they’re a survivor, but they’re not survivors yet.”  Wow (this is what I thought in my head).  But I responded “I’ve heard if you made it five minutes past you’re breast cancer diagnosis, you’re a survivor.”  And I left it at that. 

I’ve decided I’m a survivor.  It took me a while to accept that title, but I think it fits.  I genuinely think the worst part of breast cancer is the initial diagnosis….and maybe the first weeks after.  Those were the hardest days for me. 

I’ve noticed the IBC survivor web page only includes women who have lived more than five years.  I’m not there yet.  I haven’t risen to the ranks yet.  I hope I get there.  I think I will.

So what do you think?  Are you only a survivor when you get to five years?

Spring Break

I’m soaking up the sun in Florida.  I thought I’d post some pictures of us having fun.  I’m sporting a curly after-chemo cut.  I try, but I can’t do anything with it but leave it curly.  After several self conscious days in my swim suit I finally figured out a way to cut a hole in the lining of my bathing suit to add my prostetics.  They still slide down a bit but at least I LOOK like I have breasts.  I’m too cheap to buy a mastectomy bathing suit because my surgery is in less than a month.  (I am SOOOO excited about this!)  There’s nothing like wearing a bathing suit to remind you of your mis-shapen body and self-image.  (My sister is wearing the hat.)

amy-and-meleah1charisjenelijah

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Daniel Fast

Two weeks ago we started something called a Daniel Fast.  The fast is based on the account of Daniel in the Bible.  He basically lives on fruit and vegetables to prove to the King that his diet (as commanded by God in the mosaic covenant) would make him stronger and healthier than the Babylonian diet.  And it did. 

So I weaned my self off coffee and have been living on only fruits vegetables and whole grains. I can’t have animal products, sugar or chemical sugar substitutes or yeast.  The combination of these three things makes it rather difficult to eat in our culture.  It’s virtually impossible to eat out on this fast.

Overall I’m feeling health.  I’m surprised I don’t feel like I’ve lost much weight.  I thought I’d notice by now.  I don’t feel starved….just never full.  I try really hard not to just fill the space with another kind of food.  Like at night, I want chocolate….so sometimes I make popcorn. But I’m trying to remember WHY I’m fasting and pray instead.  It’s been good for me.  I’m actually surprised at how well I’ve done.  I can’t believe I haven’t had coffee for two weeks!

I get to break from my fast tomorrow though.  We’re heading to Florida for two weeks. I’ll probably post while I’m gone. I’m looking forward to getting to warmer weather and my first vacation since I’ve been better:)