MRI - a solo day in TO

Finally had my MRI.

Funny, when everyone thinks you have cancer, you get MRIs in a week, or even less.

This time was 5 weeks from appointment to MRI.  I know - still less than the average wait time.  But it felt like  a long long wait.

During this time my pain had been increasing again.

Lots of pain, lots of heat, lots of swelling.  Generally miserable all the time.  Managing pain with two extra strength tylenol and two extra strength ibuprophen four times a day.  Still hurts.  But I can get through it.

I had a lovely chat with the MRI tech before going in to the tube.  She was very friendly, and was full of questions, and just general perkiness.  I love those kinds of techs.  The hospital is big, and scary, and has lots of really sick people in it.  Techs who are positive and kind counter the rest.

My MRI took ages.  It was supposed to be from 10-1030.  I was in the tube for an hour.  Or more.  I got out at 11am.  There was lots of shots, both without contrast dye and with.

Then the tech helped me out.  And she wouldn't look at me.  She was trying to keep a neutral face.

She asked when I was going to be following up with my doctor.  I said "next month".

The tech "NEXT MONTH!  That is too long!  He'll get these today, for sure".

Crap.

They saw something.  Again.  My leg isn't better.

Bought a fancy coffee.  And waited for my blood work to be done.  Which will no doubt be normal. My MRI, however, will likely not be.

Crap.

What are the antibiotics supposed to do anyway?

I'm halfway through my 3 months of antibiotics.

My leg is still sore.

It is still swollen.

It still hurts.

It still throbs.

I visited my family doctor a couple of weeks ago, hoping to get some guidance as to what the heck is going on with my leg.

Alas...she has none.

She sent me back to the team at Mt. Sinai.

They told me the following:

Your leg is still healing from the biopsy.

Your leg is still battling a bone infection.

Of course it is sore.

Maybe you are doing too much?

Or not enough?

I was very upset.  It felt very "there there, little lady, you just go on home and put your feet up and take these pills and it will ALL be just peachy keen fine".

Fuckers.  It isn't getting better.  It isn't.

But I really hope they are right.

They say I can come back when my antibiotics are completely finished.  Scheduled me for end of September.

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.

And the good news is...

We are no further along in the is-it-cancer-or-not-cancer question.

We know nothing more about the type of growth in my leg bone than we did before the biopsy.  I still consider myself to have “probably-cancer”.

However, today has been a day of positive outcomes and good news about my health.

I rocked the biopsy.  I was very worried about the surgery.  I have never had surgery before.  I was prepared for pain.  But I was worried about feeling sick, or throwing up, or generally being out of sorts for the day.

But the day was fine.  I was in recovery until 1130, then they moved me to my room.  I was up taking care of personal business by 1pm, walking myself to the bathroom on crutches.  I slept a bit, rested a lot, enjoyed some clear fluids (mmm mmm good vegetable broth and vegetarian jello).  I felt strong and well enough to leave the hospital, and around 630 pm we left the hospital.  Drove home. Stopped for a quick bite.  Was home before 9, and was able to give the three monsters good night kisses and hugs.

The news:

They removed and tested the tissue right beside the affected area of my bone.  There was no cancer in that tissue.

The bone growth looks “reactionary” rather than  “tumour growthy” (I assure you this is, in fact, a medical term).

Now – to be fair – both of those things were considered to be very likely before the biopsy based on imaging.  However, having clinical proof and visual confirmation of that is wonderful.

It means that whatever is in my bone hasn’t spread to the tissue around the bone.

The other great piece of information is that the cells that they dug out of my bone were not easily determined to be cancerous.  Nor were they easily determined not to be cancerous.  Basically, the cells looked like regular cells.  This is FANTASTIC.  Because either 1 – it isn’t cancer.  Or  2- it is a low grade cancer.  Low grade cancers grow slowly and are less likely to spread.  Less likely to spread is wonderful news.  It also means it is not likely to be Ewing’s Sarcoma, which is a much more aggressive form of cancer than regular old osteosarcoma.  (Aside:  I think it is creepy to be wishing for one kind of cancer than another.  But it is where I am right now).

The best news of the day, for me anyway, came from an accidental run-in with Dr. W in the elevator as we were leaving.

I said “I know this may be a little inappropriate, but is there a chance you remember how my chest Xray looked?”

He thought about it.  He said “It looked good”.

This – this is the golden news.  There is no cancer in my lungs.  Bone cancer likes to spread to the lungs (this is was got Terry Fox in the end).  But there is no cancer in mine.

If it is cancer…it hasn’t spread.  And we caught the sucker early.

We now wait for the pathology results to come back.  We continue to hope for not-cancer, but I know that no matter what disease I am up against, I will win.

Another MRI

Telling Bee was easier than telling my parents.  Of course, the fact that we had to have the conversation in the 5 minutes it takes kids to get into their jammies helps for sure.

Can’t get too bogged down in the details or the sadness when you have a child at the table joining us for tea!

But then there was a very long drive home.  A drive that normally takes fifty minutes took two hours.  Two long hours in the dark.  To prevent despair,  Jann Arden kept me company on the way.  I know all the words – so if you were driving on the 401 on Thursday night and were stuck in the traffic caused by the closing of two lanes for construction, and noticed a crazy lady in full karaoke mode…that was me.

The MRI I had on Thursday went fine.  I got into the hospital in just over two hours of travel time.  Again on the subway with the great unwashed.  I did, however, get my very own single seat on the way in.  Which meant – NO ONE TOUCHED ME.  Bliss.

The MRI tech was lovely.  Very sweet.  She came out and called my name, but then checked her sheet.  She felt I was very young.  I can honestly say, I’m never called young anymore.  I glanced at the requisition form.

“URGENT!!!  Need MRI before sarcoma biopsy Mon, April 30”

Which explains why despite the 2-3 month wait times for MRIs, I have managed to get my two in one week, and then one day.

The tech asked the usual question “So, do you know why you are here?”

Yes – to get a picture of the growth in my bone before Dr. W does a biopsy on Monday.

After the MRI, the tech said “Are they sure it is a sarcoma?  Your bone looks very straight”

No.  They don’t know.  That is why I’m having a biopsy.  And my bone looks straight because if this is cancer…we caught it early.  The cancer hasn’t started bulging out of my bone.

Tech “I really hope it isn’t a sarcoma”.

Thanks.  Me too.

More telling

Thursday, I had to tell my parents I probably had cancer.  I can honestly say it was the hardest thing I have ever had to tell them.  You could visibly see my mother’s heart break when I told her the news.

Granted – she was thinking that I was going to tell them that I was pregnant.  Failing that, perhaps my relationship was in trouble, or perhaps DP had lost his job.

Cancer was not expected, and a whole lot worse.

After the initial discussion, my parents went into business mode.

Mom “So, we will look after the children on Monday while you have your test.”.

Kat “No, mom, you can’t do that”.

Mom “Why not” (bristling a little – because this is something that she CAN do, LOVES to do).

Kat “I need you to look after me”.

CRACK.  There goes her heart breaking again.  And the tears.

I honestly thought that my time of causing my parents pain and suffering was long over – adolescence was fun for everyone – but this is a new entire level of sadness.

I know what I’m going through.  I know how my body feels.  I know the uncertainty, the misery and the stress of the unknown.

And the only thing worse than going through this myself, would be to have this happening to one of my children.

So I get it.  It must be brutal for them.

Perfectly healthy...

Most common question asked of me during Xrays, scans, tests and checkups:

“Do you know why you are here?”

Nobody wants to be the Xray tech spilling the beans on a cancer diagnosis.

Second most common question:

“And how is your health, generally”

I’m very healthy.  My leg, on the other hand, is very sick.

I’m perfectly healthy.  Except for the cancer.

A day at the hospital

I didn’t sleep much last night.  Though I was exhausted.  And drained.  I took pain meds before bed, but they wore off, and I was wakened by pain just after 4am.  And then my brain started racing about all the things I had experienced the day before.  And I was up until after 7.  I did get another couple of hours of sleep.  DP (bless him) took pity on me and my sleepless night and got up with the kids and started breakfast.

Tuesday, the big day, started very early.  We were up at 530, so we could leave by 6.  It was like we were going on vacation to Turcs and Caicos again.  Except totally not as much fun.  But the same sneaking around the house quietly in the dark thing.

We were hoping than the 3 hours that we left for getting there would allow us to take our car all the way in.  Alas, the traffic was working against us, so we took the subway in.  It was crowded.  With people.  Standing really close to me.  Shudder.

We find the hospital, and find Dr. W’s office, where we are greeted by a soft spoken man who works for the doctor.  He gets my information and my MRI disk and my Xray disk.  And hands me some paperwork to fill out before meeting with Dr. W.

So we sit in a row of chairs.  With signs for “Orthopedic Oncology” all around.  Pictures of tumors on the wall.  Success Rates posted.

I find this terribly funny.  I mean, I know why we are here.  I know what Dr. W does.  But what if you didn’t?  That would be quite the shock.

We are taken into a room by a medical student who takes my history.  She can’t find the lump on my leg, but I could certainly feel her touching it.

We then wait some more.  I get worried, as we were supposed to have my appointment with Dr. W at 9, then another appointment at 1030.  It is 1025, and  I still haven’t met the doctor.  I go to talk to the soft-spoken man, who tells me he has already changed my appointment and I will go later on.  Perfect.  That 1030 appointment was supposed to be a pre-op appointment.  For an operation that the doctor hasn’t told me about yet.  A little awkward.

Dr. W comes in.  He seems kind and friendly, and gets right to it.  He starts with “So – what do you know?” I tell him that we are here to find out if I have a bone infection, or if I have cancer.  He says okay, and goes on with the appointment.  He can feel the sore spot right away, guessing it from the MRI he says, but he can feel the swelling as well.

He can’t tell me for sure if I have cancer.  He tells me I probably have cancer.  And that the only way he can know for sure is to do a biopsy.  They will culture some, in case it is an infection, but some will go to pathology to determine the type of cancer. His vibe is that he would be surprised if it was an infection.  So there goes the hope that he tells me he was the wrong doctor for me.

It is likely osteosarcoma, lymphoma of the bone or Ewings sarcoma.

Regardless of the type, I’m looking at chemo and surgery.

But he says the following:

“You will be cured of this”.

I ask him if he will connect me with an oncologist.  He smiles and says that he is an oncologist.  Cancer in the bones is all he does.

That hits me pretty hard.  All he does is bone cancer.  And he says I probably have cancer.

Translation:  It is very likely that I have cancer.  Way more likely than not.  Way more.  It is as good as a given.

However, he feels very strongly that it will be very treatable.  It is still contained in the bone, there was only a small amount of bone growth, not a big lumpy tumour outside of the bone.

The rest of the day filled up quickly.  Much of the testing was to help with staging.  They need to know if the cancer has spread.  I had Xrays of my lungs (bone cancer likes to spread to the lungs), and of my shoulder and elbow (I’ve been having pain there, likely unrelated to the cancer, but better to have it checked out).  They also wanted new ones of my leg.  I will also be having another MRI and a CT scan.

As an extra treat – I had a bone scan.  This is a super cool thing.  You get radioactive isotopes injected into your vein.  Then you wait 2 hours. (We went for lunch)  The isotopes collect in your bones.  And they REALLY collect in “hot spots” in your bones.  These spots can indicate areas of extraordinary cell growth.  Cancer.

I got to see part of my scan – and my right leg was BRIGHT WHITE.  Glowing.  From just below my knee to about half way down my shin.  Bright white.

The only other hot spots that I could see were my bladder and kidneys.  The isotopes like urine too!  There is nothing wrong my bladder and kidneys.  I was just working out my coffee and waters from lunch.

Now – I’m not a doctor (nor do I play one on TV), but the fact that there were no other big giant bright white areas made me SO HAPPY.  Hoping that Dr. W also finds no other bright white spots.

Probably-cancer

Happy Anniversary to me.  14 years with DP.

I have moved from having maybe-cancer to having probably-cancer.

And my hamster died.

So it was a big day

Too much to process.  Need to clear my head.  Too much reality.

Way.  too.  much.  reality.

Fuck.  Cancer.  What the hell?

Yawn

I need to go to bed soon.

I’m worried if I go to bed too early, I won’t be able to sleep.

I’ve got myself convinced that not only do I have bone cancer, but I also have lung cancer and it is so big that it is pushing on the nerves of my shoulder, causing the pain and numbness that I have in my left arm.

Google certainly sucks. 

But I do need to mention my shoulder and arm pain to the doctors tomorrow.

I also looked up Dr. W on the hospital website.  Unfortunately, the top hit was the sarcoma physician referral form.  Well.  That sucks too.

I was really hoping to find him listed as the hospital’s expert in treating bone infections.

Maybe-cancer

I have a really bad case of maybe-cancer.

This is a rotten disease.  It fills every spare moment, every quiet minute, every second I’m not actively doing something productive, the maybe-cancer takes over.

The maybe-cancer makes me hate my leg.  Makes me angry and miserable.  And yet the maybe-cancer reminds me that this pain could very well be the least of my worries in the future.

The maybe-cancer makes me limp around the house, washing winter clothes and putting them away.  The maybe-cancer is making me re-label storage bins and clean out the hall closet.

The maybe-cancer is making me nest and clean and tidy and organize and purge.

I’m frantic.

This could be the last weekend I don’t “officially” have cancer.

And I still haven’t found a babysitter or a house cleaner.  I simply have too much to do to get ready for dealing with a bad diagnosis!  I’m running out of time…the maybe-cancer is closing in and making everything I do stressful and hard.  I sometimes forget to breath.

The maybe-cancer sucks.

I reflect on just a week ago, when I really wanted to know what was wrong.  I really wanted to know, so that I could fight it, and get better.

But now I don’t really want to know.  I just want to wake up and magically be better.

The appointment is in only 2 days.  Well – 2 days, and then it is bedtime to prepare for getting up for the appointment.  But 2 more full days.  Time flies.  Time drags.  It is horrible.  I don’t know which I prefer.  But it seems to drag when I’m in pain, and fly when I’m have a wonderful time with the kids.  Just like real life, I guess.

The advantage of actually getting a diagnosis is that I can come out of my cave.  I feel I’ve been hiding.  It is easier to avoid people that to have to answer questions.  I hate lying.  I pride myself on never lying.  I’ve been lying like crazy the last few weeks.

“How is your leg”  “Coming along, thanks”

“What does your doctor say?” “She is still working on it”

“Are you limping?” “Yah, tough game last night”

“You looking forward to track and field?” “Absolutely, should be a great season!”

The maybe-cancer is turning me into someone I’m not.

Still crossing my fingers for a bone infection.  Funny how surgery and hard core antibiotics seem like a dream diagnosis when cancer is the alternative.

What not to do

I can’t really write.  Can barely string a sentence together in real life, let alone on the computer.

So much going on in my head.

I got the call on Wednesday.  I have an appointment with Dr. W in TO on Tuesday.

I’ve been told to book the whole day.  I will have several appointments, several tests.

As a side note:  Watching Private Practice while the mother dies of cancer with her son sobbing and hugging her, while you are waiting to hear if you yourself has cancer:  NOT a good idea.  Just in case you had any doubt.  Dinner was 15 minutes late.  It took me that long to stop sobbing.

Real

DP “This is all going to get real very quickly”

Official update - still no news

No news is….well, it is still no news.

My family doctor called me before dinner.

She had called Dr. W today, and spoke to the receptionist/secretary/person that answers the phone at his office.

She said that she needed them to call her back with a date for my appointment with Dr. W.

Dr W’s office hasn’t  called her back yet.

There was an alternate surgeon’s name given to her by the local orthopedic guy.  But my doctor knows the work that Dr. W does.  He has been fantastic for another one her patient’s crisis care.  So she would really like me to get in to see him.

I asked her if she knew what was wrong with me.  “Do I have cancer?”.

She took a deep breath.  And said:

“Kat, I just don’t know.  Unfortunately, it is a possibility.  But I can’t even tell you the likelihood.  I can’t interpret the MRI.  It isn’t my specialty.  But Dr. W can tell us.  He is the expert.  He can tell us if he is the doctor to fix you, or if you need to go to someone else.”

All right then.  So we wait.  For Dr. W to get through the backlog that has no doubt piled up on his desk while he was away last week.  And for his office to call to set up the appointment.

Again, my doctor is very concerned about the level of pain I’m in.  I assured her that I’m not in that much pain, as I have pretty much eliminated all unnecessary activities.  Like walking <grin>.  I sit.  A lot.

The toradol does work well.  But you can’t drink while taking it – which rules out Friday and Saturday nights.  In all seriousness – it makes me dizzy and a little out of it.  So I only take it at night.  But it wears off after about 5 hours.  So then I wake up.  But it is better than nothing.  Tonight when I wake, I’m going to take some ibuprofen before trying to go back to sleep.

My doctor says she will talk to me again this week, one way or another.

So we wait.

A watched phone never rings...

Waited all day by the phone.  Again.  It is now 445, and still no call from the doctor.

At 220 this afternoon, I called the office and told the receptionist the following:

“I need my doctor to call me back today.  I had an MRI.  My leg either has an infection, or I have cancer.  I need my doctor to call me back TODAY and tell me if I have cancer”.

I know.  Not subtle or discreet or even respectful.  But I’m loosing my mind.

DP and I had a huge meltdown-y talk last night.  About what the heck we are going to do if I’m sick.  How will we cope? What can we give up?  What can we do right now?

We need to keep DP working, if at all possible.  He will take leaves, he will take vacation, but we really need to keep him employed.  He has great medical benefits, and there is likely quite a bit of medication cost or physical therapy costs coming up.  Obviously, we will constantly re-evaluate as thing go on, and as we get more information, but we need to work with what is best for the whole family over the long term as well as getting us through the immediate crisis.

Whatever the hell that crisis is.

It is 455.  Still no call from the doctor.  I may camp out at her office first thing Wednesday morning if I don’t hear from her today.  This is now bordering on cruel.  I have known for 3 weeks that there was something officially “not right” in my leg (after my Xray), and now it has been almost 2 weeks since the MRI –  which we knew was “not good” right away.

Jay and her kids spent a couple of hours here this afternoon.  We have been skipping activities.  Been spending a lot of time just cuddling on the sofa.  Or I sit on a chair in the front lawn with my phone beside me.  Watching the kids in the park.  So today was a nice distraction to have them all here.  My crew loved it.

Small-c dropped dinner and snacks off for me today.  To save for a day I didn’t feel like cooking.  Well.  Today felt like that kind of day.  I made bread to go with it.  But the kids ate the snacks all day, and there was no thinking.

I need to get more sleep tonight.  I lay in bed last night for ages.  My mind spins, my leg hurts.  It is hard to settle.

It is 5pm.  My doctor is done seeing patients around now.  If she doesn’t call by 6pm, then she won’t at all today.

Please be the wrong guy.

Waited all day by the phone.  Again.  No call from the doctor.  I knew that there wouldn’t be.  I really did.  My doctor had clearly said that she would call Tuesday.  But there was still a small part of me that was hoping and wishing that someone would call.

To at least give me an appointment time with Dr. W.  So I can start planning that.

Or maybe to tell me that Dr. W is not the right guy.  That he feels that I need to see someone else.  Someone maybe less cancer-y.

I cannot go much longer without knowing what is wrong.  Every ounce of my being aches to get answers.  I just need to know.

DP needs to know.  He is very stressed.  He has gone from “you are fine, it will all be fine” to “I’m not fully willing to accept it, but why else would they be sending you to Dr. W?”.  He is not sure what we are going to do.

I’m still praying that Dr. W will say “I’m not the right doctor for you.”

Even if it is “just” a bone infection, there are LOTS of things I have to do.  So much of any illness is out of my control.  But so much is.  I need childcare.  I need meals planned.  I need a cleaning lady.  (thinking a cleaning lady may be a good thing anyway)

Calm

The calmness that comes with knowing that today, you will learn NOTHING new is amazing.  Quite freeing, actually.  The phone rings, and you can answer it without dread.  I am feeling much guilt about not telling people about what is going on.  I feel like I’m letting people down, not taking on as much responsibility as I normally do in a given week.  I sit at activities instead of running around.  I expect others to play with my kids at group gatherings.  I sit in the park instead of playing tag.  But I have to take care of myself.

My leg bone is in a “weakened” state.  My family doctor has made it clear that I MUST go easy on my leg.  In its “weakened” state, it is very easy to break.  And that would suck.  Whatever is wrong with my bone needs to stay in my bone.  It seems contained right now – obviously my bone has grown a little, so things are “pushing” out.  But it is smooth and contained.  It needs to stay contained.  Bone cancer loves to spread to the lungs.  Which doesn’t turn out as well as plain old regular bone cancer.

"I'm sorry, but I can't"

You know what else sucks…when emails and phone calls come in and say “Hey, can you coach track and field again this year?” or “Our testing is starting up again, can you start working again in two weeks?”  And I don’t know what to say.  If this is nothing at all – then I can say “certainly, I’m in”.  But as it stands, I’m not sure what to say.  I don’t want to tell people my situation, and yet, saying no requires some explanations, as they are things I have done many times before, and I’m depended on to continue doing them.  Obviously, if I’m sick, then no one would expect me to coach, or to work at 530 am.  But I’m not ready to tell people I’m sick.

So I’m coming up with a half assed “reasons why I can’t” email.  One that doesn’t lie.  But one that doesn’t exactly tell the whole truth, either.

Away? When I need him?

Couldn’t handle waiting any longer.  At 230 this afternoon, I called my family doctor to see if there has been an appointment made for me in Toronto.  The receptionist, who, for the record, has become much nicer to me since she is aware of my medical situation, told me that Dr. W is away for the rest of the week, and will be looking at my case on Monday when he returns.

My family doctor will call me on Tuesday.  That seems really far away.  I likely have another week of not knowing what is going on.  Not knowing what is wrong with me, and another week of not being able to come up with a plan of “attack” against whatever I have, and not being able to come up with a family plan to support my health care plan.

I need plans.  They keep me sane.

The telling

I told Jay tonight what has been going on.  I think I have practiced it enough times in my head that it sounded okay.  I don’t know.  She held it together.  She really did.  Tears came to her eyes.  Her hubby was there – I had asked him to stay.  He needs to be there for her.  So she can be there for me.  A big, giant, comfort-giving chain.  Her hubby has never really been my biggest fan, but I have earned my “sister” status over the years.  So he is stuck with me now – an emotional mess of a SIL.

I got into the car.  It was already past 1030.  Tired.  Sat for a second.  Then I drove away.  As I passed their front door, I saw Jay sobbing in her hubby’s arms.

The worst part of this so far is seeing people who care for me upset and unsure.  I’ve only had to tell 3 people so far.  So that is 3 people upset and unsure.

And I don’t even know what is going on yet.  We don’t know what is wrong with me.

I cannot imagine how hard things will be if I have to tell the rest of my little world bad news.

Good News/Bad News

 I am afraid to leave the house, to leave the phone.  I am always waiting for that appointment.  Waiting to find out how bad things are going to be for my family.

I have allowed myself time to search for information and freak out nightly after the kids go to bed.  This scheduled time allows me to do normal stuff during the day.

I spend a lot of time looking up the specialist in Mt. Sinai. 

The good news:  Dr. W is considered to be one of the best in his field.

The bad news:  His field is osteosarcoma.  Bone cancer.

The good news:  His team has a great survival rate – no hospital in the world has a better one.

The bad news:  Fucking bone cancer.  Survival rates.

Two Evils

That was the longest long weekend EVER.  I wait, as patiently as I can, at home, beside the phone all day.  I carry it with me everywhere.  I doesn’t ring, so I try it occasionally with my cell phone.  It is working just fine.  Just fine.

My doctor finally calls after 5pm.

She is calm, but concerned about the pain.  Offers me a prescription for stronger meds.  I’m hesitant to take anything strong – as I need to be 100% with it to parent the kids and get through my day.  But she suggests and anti-inflammatory, and I figure it won’t hurt to try it.  I’m using my pain as a reminder not to over do things, though, so although the pain is annoying, it reminds me to take it easy.

She says the MRI shows something in the bone.  Nothing in the muscle or tissue of my leg, but that there is something in the bone.

Likely a bone infection.  Or Cancer. (I’m pretty sure she said it with a capital C)

To be honest – this doesn’t really surprise me.  It has been what we have been worried about for weeks.  Bone infection or cancer???  I was really hoping the MRI could show us one way or another.

My doctor had already spoken to the orthopedic specialist at GRH, who had told her that it needed to be sent to a specialist at Mt. Sinai in Toronto.  So a referral has been sent.  And she will get back to me by Thursday, if not before.  If his office hasn’t called by Thursday morning, she will call them herself.

The good news is that my blood tests came back normal.  Normal glucose, normal CBC, normal liver function, normal kidney function, no heart muscle damage.

So this is good – whatever is wrong hasn’t made my body sick yet.

However, if it was a bone infection, it is likely that my CBC counts would be off.

So I’m not sure if the normal blood counts are good or bad.  I was hoping that it would show that I was battling a MAJOR infection, and that it would trigger some high dose antibiotic treatment, then I’d be fixed up and pain free in a couple of weeks.

Alas.  Still no firm info about what is wrong with me.

Results are in

My family doctor calls.  And leaves a message.  She has gotten the results of the MRI.

What the fuck???

She has gotten the results in less than 24 hours????

The message gives me no details (privacy laws), but does assure me that there is nothing emergent that needs to be done this weekend.  And that things are looking serious, but I’m not to panic too much, and that she is working on a plan to get my leg fixed.

She does want the results of my blood test.  So if I haven’t done that yet, I need to do it right away.  I had gotten it done already, so I feel on top of that, at least.

Oh – and this is Thursday before Easter.  And she isn’t working Monday.  So she’ll get back to me Tuesday.

I try not to panic too much.  I still have only told DP and small-c about what is going on.  They both have to put up with my freakouts and my denials all the very long weekend.

MRI

I pick up a requisition for blood work in the morning on the way to our activities.  I’m not sure if it was because of the letter, or if the doctor just wants the information.  Regardless, I’ll fit it in the next day.

The MRI goes well.  I had one years ago for my shoulder, so I knew what I was up for.  It is loud, some people find it very hard to lay there.  I don’t.  A pillow and a blanket and someone else looking after my kids for an hour?  I’m in.

I worry after the scan.  There are FAR too many techs in the observation room.  My MRI tech who did my contrast injection and had gotten me settled doesn’t walk me out of the room as she had the other patients that morning.  She doesn’t even look up.  No one walks me out.  I’m just told “We’ll get the results to your doctor next week”.  There are four MRI techs looking at the computer screen in the observation room.  Shit.

Panic sets in

I call the doctor’s office on Monday morning to get my appointment time.

Wednesday April 4.  As in two days from now.  2 freaking days.  I have only known one other person to get an MRI appointment within a week.  And it wasn’t a good thing.  Not at all.  It meant that the doctor knew things were pretty bleak for that person.  Which the MRI totally confirmed.

So I panic.  I am completely hysterical.  I’m not an idiot – I have googled periosteal reaction.  I know what can cause it.  But I’m horrified that I’ve been “expedited” this quickly.  I’m also thrilled, as we can then start to fix me.  But I’m mostly horrified.  It is worse than I thought.

Dear Doctor...

I write a calm, collected letter to my family doctor saying that I appreciate the efforts being made, but that there has to be something else we can do to get a clue as to what is going on.  A blood test?  A bone scan?  Do I need to go to the states to get a private MRI?  Only one friend knows about this.  So I have small-c read the letter, to make sure I’m not being offensive.

I drop the letter off on Friday as part of errands.  I hand it over with trepidation, as the last thing I want to do is to offend the person who is my primary care physician.

When I get home, there is a message from the doctor’s office.  They have an appointment for me for the MRI.  Of course, due to privacy issues, they can’t even leave the time with me, but at least I know that it has been booked.  So now we wait.

Xray - periosteal reaction

Now – the internet is a wonderful place.  The web has LOADS of interesting information.  The websites I read told me that SVT or phlebitis could take 3-4 weeks to fix.  I should have felt reassured that my leg would fix in time.

But I wasn’t reassured. My leg was getting worse pain wise, though the swelling was reduced.

I had another appointment, with my own doctor this time.  I was sent for an Xray.

I spoke to my doctor the following day, the Wednesday.  She said that there showed a subtle periosteal reaction on my bone.  Basically, there was bone growth. Not much, but some.  My doctor said she was going to requisition an MRI to get more information.

Now.  In my province, MRI times are 2-3 months.  2-3 months.  I am calm about that.  Until I think about how much pain I’m in on a daily basis.  And how long 3 months seems from now.  Can I really be in this much pain until mid June??

DVT?

I had “pitting edema” meaning you could push into the swollen parts of my leg with your fingers, and make fingerprints that stayed for a while.  Sexy, I know.

DP had spent some quality time on the internet, and had decided that I needed to call the doctor.  As I bully him to see the doctor from time to time, I agreed.  I knew he was right.  There was something definitely wrong with my leg.

My doctor’s office took this all very seriously.  I called in the morning.  They saw me at 1230. My own doctor was away, so I saw another member of the practice. .I was booked in for an ultrasound at GRH at 230.  I was directed to go straight to the hospital, and not to leave the hospital until I had been cleared to leave by the ultrasound tech.

The doctor suspected DTV.  Meaning if the suspected clot dislodged, I could have a stroke.  Fun.  I couldn’t go straight to the hospital, as I had the kids with me.  But I dropped them off at home with DP, and headed to the hospital.  I even paid for parking.  Obviously, that was me taking the threat of a stroke very seriously.

There was no DVT.  Great news.  So likely SVT or phlebitis.  Wrap it.  Ice it.  Elevate it.  Take ibuprofen.  Take it easy.

Done.

The beginning

(This post was written in April 2012, backdated to provide history)

The beginning.

In all the cancer/illness blogs I read, there is a “how this whole thing started” post. This is mine.

I’m an active person, and I’m prone to overdoing it.  For sure.  I jog, I play hockey, I chase the kids around the park, I’m active.  My waist line doesn’t reflect my level of activity.  Rather, it reflects my enjoyment of red wine and gin.  And Doritos.

In January, I started noticing pain when I jogged or when I played hockey.  So I stopped jogging for a week or so, to give it a rest.  I didn’t stop playing hockey.  Because hockey hurts  less than jogging, and is WAY more fun.

I tried jogging again.  The pain hadn’t gotten any better.  If anything, it was worse.  I figured it was my weight.  Or that I was out of shape.  Rest it – and walk instead of jogging.  Perfect.  February came and went, with me doing the most I could.

In March, the pain in my leg continued to grow. Except now it was all the time.  It even woke me up at night. There seemed to be swollen spot on the side of my shin bone. I started taking ibuprofen before bed so I could make it through the night.

By March break, my leg had swollen up quite large, and was “giving out” during activities.  I stopped activities.

An Apology

(This post really was written April 25, 2012.  But I wanted it to be the first one.  So I backdated it.)


I'm sorry to be telling you this.   There is no easy way.

I probably have cancer.

A big old apology to those of you who are finding out about my situation this way.

I know, I know, the internet is a non-personal place.  It is unkind of me to not take the time to tell everyone in person.

I have told some people in person.  This doesn’t mean that “I like them better” or that “they are better friends”.  Some family has found out in person, others got an email telling them to come here to get more information.

But here is the thing.  Telling people you are sick SUCKS.  I am telling people some of the worst, most private news ever.  And I cannot control (or even begin to predict) their reactions.  And, sadly, some of the questions that are raised during “the telling” are hard question.  Really. hard. questions.  Many of which I just don’t have answers too, despite being asked them endless amounts of times.  Many of which my doctors cannot answer.

So here is the scoop:

 I will likely be officially diagnosed with some kind of bone cancer in the next week or two.  I expect the next year to be hard, but that I will recover fully.

And while I understand that many of you would have preferred a phone call, or a visit, please know that it is too hard to say the words  Too hard to see faces fall.  Too hard to see the tears.

So this is it.  And I’m fighting now.  I will be fighting harder than I have ever fought before. Which means, I get to put me and my family first.  All the time. 

And as DP has always said when I tell him how worried I am that people will be upset at me for telling them this way, or telling them later, or not being honest with them during the uncertain time before diagnosis….

“How mad are they going to get at the chick with cancer?”