Start the Car

I have never gotten out of a hospital so quickly.  I was desperate to get out of there before they changed their minds.

Ikea Start the Car



They didn't find cancer.  They found nothing.

Nothing.

Which is great - because I don't have cancer, but not great - because they really don't know what is wrong with my leg.

They are going to assume it is a bone infection (osteomyelitis).  3 months of antibiotics should clear it up.

They didn't manage to culture any infection.  No bacteria or virus was found in the "generous sample" that they took from my leg and bone.  But it is their best guess at this time.

They still don't really know what is wrong with my leg - and it still really hurts - and my bone throbs at night.

But I'm delighted I'm not starting chemo on Monday  :)

Part of me is paranoid that they biopsied the "wrong" area.  And that there is sarcoma lower down.  Or higher up.  And that it will spread and grow.

But that will be caught in August, when we go back fro more testing.  And even, at that point, if it is cancer, it will *still* be early.

In the meantime, I'm on my antibiotics, and calcium and vit D to heal any possible infection, and to regrow the damaged bone.

And I continue to be delighted that I'm not starting Chemo on Monday.

Living in Egypt

Living day by day with probably-cancer is horrible.  I know, having for-sure-cancer sucks worse.  Because then you actually have cancer.  I know.

But this waiting.  And holding on to hope when the logical part of you says there really is no chance of it not being cancer.  It is so stressful and ridiculous.

When my family asks how I’m doing, I reply that I’m happy in Egypt for now.  As they say, “denial isn’t just a river in Egypt”.

I’m not really in denial.  I just can’t get bogged down in the details of cancer-land right now.  Because I don’t know them.  I don’t know what is happening.  I don’t know what will be happening over the next week, or two, or the next year.  I have a clue.  Chemo, surgery, chemo.  But that is a little vague when it comes to planning and scheduling, so I can’t focus on what is coming.

I can focus on getting the kids school work done.  I can focus on what we are having for dinner.  I can focus on cuddling on the sofa and reading.  I can focus on soccer.  Taking care of my family – that I CAN do.  That is really all I can do.  Take care of them and take care of myself.  So I’m healthy going into whatever treatment is on deck for me.

I’m still scheduling my panics.  For an hour or two after the kids go to bed each night, I panic, scour the internet for survival rates, read blogs, cry over the ones that end suddenly with a grieving spouse providing the last entry, look up chemo drugs and their side effects, learn shorter routes into the hospital in case I spike a fever during treatment, and get angry that my family has to go through this at all.

The Call

In a perfect world, I get a phone call from Dr. W’s office saying that I have been referred to another surgeon who will be finishing up my care.  If I have a bone infection, maybe there is some hotshot surgeon who is brilliant at rebuilding rotten bones.  I happily wait the couple of weeks for that appointment, do more tests, get fixed up.  Wham, Bam, Thank you Mam.  Physio, drugs, all done.  Wrapped up in a neat little package.

Sadly – that didn’t happen.

I received a call today from Dr. W’s office.

They have booked me in for an appointment with Dr. W and his team next week on the twelfth floor of the hospital.

Damn it.  Dr. W’s team is the Sarcoma Team.  And the twelfth floor is Oncology (yes, I did memorize the floors while I was in the elevators during my previous visits).

There is no way that our medical system would waste everyone’s time and have me come in to meet with the Sarcoma Team to go over the pathology report if I didn’t have cancer.

Right?  If I didn’t have cancer, they would just shift me off on the next lucky doctor who specializes in whatever problem that was found.

But they didn’t.  They want me back.  The Sarcoma Team wants me back.

So I’m sitting at 99.999999999% sure that I have cancer.  Damn it.

The help

Watching my kids do track and field without me hurts.  I love being a coach. I love playing and running and jumping and having fun with the kids.  Of course I do.  It is part of my identity.  10 years as a stay at home, homeschooling mom.  It is who I am.

Which makes interviewing for full time babysitters absolutely horrible.

I don’t even know my diagnosis.  I don’t even know how long I will need help for.

And it is certainly awkward to explain to candidates.  “You seem really nice – and a good fit for our family.  But I really hope I don’t need to hire you.  No offence”.

If I have cancer, I’m looking to hire someone for nine months to a year.  That will keep us through chemo, surgery, recovery and more chemo.

If I have a bone infection, or some other kind of problem, then I will likely need help for 3-4 months.

According to google (I know, I know), at the very least I will require some sort of surgery to remove the rot and rebuild the bone.  I don’t know how much of my bone is damaged.  I am pretty sure my knee is just fine (no one has indicated otherwise, and my bone scan showed NO glowing in that area). But even the tibia rebuilding will require some rehab.

Responsibility

It isn’t my responsibility to help you deal with me having cancer.  It isn’t.

I have enough to handle.

I’m dealing with me having cancer.

I’m dealing with DP dealing with me having cancer.

I’m dealing with my kids dealing with me having cancer.

I’m dealing with my parents dealing with me having cancer.

I am sorry you are upset.  I really am.  I’m kind of glad too, in a sick and twisted way, as it probably means you care about me. And that you think it sucks I’m going through this.

But I can’t help you deal with this.  I can’t tell you it will all be okay.  I can’t hug you and comfort you and be there for you, and talk about your fears of mortality.  I can’t help you digest this news, and hear you imagine what you would do if this was happening to you.  I just can’t.

I have too much on my plate as it is.

"Sad Face"

First SOLO day.  DP headed to work, hesitantly, leaving me at home with the kids.

The plan was that my brother and his family would bring subs for lunch, and that Grampa would bring dinner.  So I all had to do was parent the kids all day.

This was blown out of the water by a visitor just after 10am.  I said to the kids “Don’t answer the door”.  But they did.  They were sure it was going to be their uncle with lunch.  Forget that we had just had breakfast.  It was a friend.  One who doesn’t know what is going on.

Bear “My mom can’t come to the door.  She just had surgery and has crutches”.

Friend “WHAT?”

So now I have to have her in.  Because I can’t have that circulating.  I know, I know, I should have people to support me.  I know, I know, people care about me and want to help.

But the face.  The “sad face”.  I can’t deal with it.

My kids are all in the room.  She asks what is going on.  Dancer “My mom had a test to find out the type of germs in her leg”.  That is correct honey – good for you.

Friend “What kind of test?”

Biopsy.

Friend:  SAD FACE.

If you can’t pull it together, friend, you have to leave. 

Friend left, with tears in her eyes.

Kids:  What is wrong with her???

I don’t know.

I sent a message to Friend very soon after her departure, explaining that I was sorry that I kept this from her, and that I will be telling everyone very soon, but that for now, all I needed was patience and privacy.  And that I was begging her to keep this quiet.

I’m not used to begging.  But I’m not ready.  Until we know for sure.

First day home

Spent the day pretending I was still in hospital.  Sitting on sofa.  Lots of resting.  The big adventure was crutching from one sofa to another so I could watch a movie while the kids were outside with DP.

My percocet fueled brain was very happy to have a day of nothingness. Being around the kids, being with the kids, but not actually doing anything with them, or being responsible for them.

I didn’t nap, though I suspect my brain did shut off a few times.

The pain wasn’t too bad.  But I did know when my 4 hours between pain killer doses were up.

As an extra bonus, I was outed by Dancer today.  “That is a nice purse, Dancer”.

Dancer “Thank you.  I got it when I dropped mommy off at the hospital.  Now she has great crutches with stickers”.

This is what happens when you encourage open communication with your children.

They openly communicate.

Phone call to ask for discretion followed.