This process of waiting is more than the “don’t think of a pink elephant” and that’s the first thing you think of.  Way more.  It’s more like working in an office, having your boss come in and tell you that there’s an animal loose in the room and they’re not sure what it is yet, but they’re trying to figure it out.  So don’t worry.  Just keep working.  And every now and then while you’re trying to file reports or send e-mails, something bites you. Sometimes hard. Makes work a little difficult.  Also makes you a bit crazy.

So what is strength?  It’s something I’ve been thinking about the last few days, but today especially.  I think the underlying emotions are the same but everyone deals with crisis in their life very differently.  There wasn’t a pamphlet in the doctors office of “Hey! We really think it’s cancer, but we’re not entirely sure”  so I didn’t really know what to expect.

Keeping strong for me is being real.  It’s embracing the emotions that come, sit with them for awhile and decide which ones get to stay.  I think it’s  unreasonable for someone with this kind of news to not emotionally explore what possibilites may come.  The difficult part right now is processing all of it without causing worry.  I happen to like to talk about it. And sometimes those thoughts may be a little darker than others.  Sometimes I’ll be funny and sometimes I’ll be sad. And maybe I’m over the hump?  I have no idea right now.  There wasn’t a “Still think it’s cancer but it might be 2 more weeks” pamphlet either.
Maybe I should write one for them. And then all of this may all change once we get the official word and move into treatment.  Who knows. We’ll see. Hopefully there will be a pamphlet for that.

But please know, dear friends, that whatever space I may seem to be in, I’m still in warrior pose.  Getting ready for whatever battle may come.

A little surprise(d)

Saw the oncologist today and unfortunately we now have more questions than answers.

The first part of the appointment was with the gynecological senior resident. She did another standard exam with an added quick finger up the bum bonus.  Yowsa!  Never had that happen before.  At least she was quick about it.  I’m pretty sure I missed a few sentences afterwards.  Took me a minute to look her in the eye again.
(What did I tell you about that TMI filter?)

She went over pretty much what the last doc said and thought surgery would be the next step and even said we would get a date scheduled today.  Awesome!  She said she’d be back with the oncologist in a few minutes.

MJ played with all of the stuff in the drawers while we waited, which was quite fun.  I need to remember to keep my phone closer at hand for photos.

Oncologist doc came in with the doc we just saw and showed us pictures from the last scan.  He said the masses in my ovaries aren’t typical for ovarian cancer.  I guess they are more fluidy.  Geez, even my ovaries retain water!
He also said it’s not typical in ovarian cancer for the liver lesions to be on the inside, which mine are.
So basically, he’s not saying it’s not ovarian cancer, but he’s not saying it is.  And he’s not saying it’s not cancer.  Isn’t that interesting?

Sooooo next step is they want to biopsy my liver to get an answer on the primary.  He sent the order to radiology and I was left with a “don’t call us, we’ll call you” when they’re ready to schedule it.  Likely end of the week they will call and who knows when they’ll be able to schedule.
Are you fucking serious?
Part of the system now.

The one thing the gyno said too that was a little frustrating was when she was talking to us about getting a surgery date, she said it would probably be within 6 weeks.  SIX WEEKS?!??  So even if we get the biopsy back fairly quickly and do determine it’s ovarian, were probably going to have to wait 6 weeks until surgery.
I’m putting all the last good vibes I have out there that this is not what’s going to happen.
Should this be a good sign?  I guess they think I’ll live at least that long.  Whew!

ohhh Bonus post

Spent the rest of the day today with the family and it was good.  The kids dad, Brian came over and we introduced the kids to Star Wars!  I think Brian and I were a little more excited than they were.  They seemed like they were getting into it.  Probably Kian more than Nalani.

Big day tomorrow. We meet with the oncologist. Finally. I’m excited. I can’t believe how much I’m looking forward to something that is going to be so shitty. But I feel like were finally gonna get moving forward. Get on with it!
The gyno on Thursday said they would likely start with a full hysterectomy and a “debulking” process where if they see cancer and it can be taken out, they will.  Basically they’re gonna scrape me out.  Then likely chemo to follow.  I’m hoping we can start this process very soon.  My antsy pants can’t take much more of the “hurry up and wait”.

In preparation for some recovery down time, I’m looking for suggestions for movies, shows or games.  Hit me up with ’em.
And btw…  if you haven’t seen this  do. it. now.

Damn rollercoaster

This morning I felt great!  I have for the last couple of days.  I really feel like the diet is helping a lot in that.  Slept pretty well the last couple of nights.  And then it hits…  out of the blue.
Fatigue.  Slight headache.  And then the pain.

*I’m going to pause for a moment and let you know that I will probably be talking about things here that may be difficult.  I have no TMI filter right now.  You’ve been warned.*

I’ve been struggling  with constipation, which is a classic symptom.  I figure the pain is related.  But I also started spotting.  Ugh.  Not good.  Broke into a sweat and was eventually doubled over in the bottom of the shower.
MJ came in to check on me and see if I wanted to go to urgent care.  I didn’t see the sense in it.  There’s one thing that’s a little relieving about my current condition. When stuff like that happens now, I don’t have to freak out and wonder if I have cancer.  I already do!

I felt better after a little water therapy. Still a little fatigued. Since I had been tracking my periods closely for the last few months we remembered that it would be right about this time that I would be ovulating.  Seems like they wanted to get that one last hurrah out before being gutted.

The thing that came to mind during this episode is that I know things are going to get much worse.  I’m going to struggle and I’m a little scared of losing my fight in those moments.
The picture at the top of this blog is of a hongi.  It’s a traditional Maori greeting.  And now I will quote Wikipedia to explain the rest:
It is done by pressing one’s nose and forehead (at the same time) to another person at an encounter. In the hongi, the ha (or breath of life), is exchanged and intermingled. Through the exchange of this physical greeting, one is no longer considered manuhiri (visitor) but rather tangata whenua, one of the people of the land. For the remainder of one’s stay one is obliged to share in all the duties and responsibilities of the home people.

Many of us are great distances apart, but I’d like to ask that we virtually take part in this ritual. The duties and responsibilities I’m asking of all of you are to help me keep my fight.  And when I am down and can’t find the corner, I will look for your breath of life and get back up to fight on.

It’s about to get real up in here yo

We met with a gynecologist on Thursday morning.  I thought it was odd that it was just a regular gyno, but I figured that was the next step according to Kaiser.  Yeah, it wasn’t.
She basically walked in said, “You know this is cancer, right”?  Well, yeah.  I mean we don’t have an “official” diagnosis, but yeah.  She wasn’t sure why were sent there but hopped on the phone to try and get me in with the right people that same day.  No can do though, and so here we are on another 4 day holding pattern.  ARGHhhh!

We have a magnet and poster of emotions that we use sometimes when talking to the kids.
It looks like this:

I have gone through every single one of these emotions in the past 48 hours.  At least twice. Some of them more than others.

A little bit of reality setting in and still no action.  It’s driving me a bit insane.
The only thing I haven’t hit is the “why me”.  I don’t know why and it doen’t matter but really  I feel like “why Mary Jo?, why the kids? why my family?”  I do believe everything happens for a reason and everything in my life with MJ has been God lead, it just seems so damn unfair and hopefully I can find a way to work through those emotions.  All of them.

So we’ve been trying to keep busy.  Errands, friends, garage sales.  Whatever we can do to pass the time.  I’ve had very high anxiety and it’s hard to escape it.

Now that we have a clearer picture of what’s going on, I feel like I want to be informed but the information gets so overwhelming.  And frightening.  Certainly not helping with that whole anxiety thing.  I did join an online support group and will be looking for a local support group.  Hopefully that will help.

Today I found a meditation track on the hospital’s website specifically dealing with cancer. It was amazing. Very peaceful and I feel a little back to normal right now.  I will definitely be looking for more of those.

In the mean time I have enjoyed everything everyone has sent to me, all the well wishes, phone calls, e-mails and funny facebook posts.  They all really do help.  Keep ’em coming warriors!

Tell you what…  you keep all that stuff comin, and I’ll stay out of that dark cloud 🙂

Waiting in the corral

I was not well this morning.  Pretty sick.  It was difficult to even get on the computer to respond to all of you lovlies out there.
So I slept.  And I was soon greeted with a visitor…

This is Molly.  She’s one of the best cats you will ever meet.  And this is how we spent our morning. In kitty cuddle heaven.

I wasn’t much better when I woke up.  I think I may have been running a bit more on adrenaline than I realized and had a little crash today.  Not sure.  In any case it was a day to process and take it all in.  And get in a little sleep with a furry purry blanket.

I have an appointment tomorrow morning for the next steps.  I have no idea what they are and I feel like I should educate myself, but I’m a little overwhelmed how.  There’s things out there that I don’t want to read and there seems to be so much. Where do you begin? I did receive a great book from a friend that seems to be a really good start and I really appreciate all of the advice from friends who have gone through similar things themselves or with a family member.

I’ve heard from a couple of my Team In Training friends. I’ve completed 2 marathons with them.  TNT raises money for blood cancers.  It was an incredible experience.
For those of you who’ve never run a race it’s a little hard to describe, but I’ll try:
On race day, there’s a lot of excitement, anxiety and adrenaline as you wait for the gun.  When the gun finally goes off, you still have to wait for the corrals ahead of you to go.  And you’re pumped and it’s hard to not push ahead.  Once you see the clearing to start you want to just start sprinting.  But the key to finishing a marathon without injury or illness is pace.  You have to start slow or you risk not having enough energy.  And as you go there’s people cheering you on and in the one’s I did bands playing every coupe of miles.
The first 4 to 6 miles are good.  You find your groove and love that you’re doing it.
Starting around mile 7 you start to enjoy the crowds a bit more.  Keeps you focused.
Miles 12 to 14 are exciting and scary.  You start to feel the pavement with every step and little aches start to  make themselves known.  You pass the 13.1 mark though, and that’s encouraging.  Half way!
Miles 16-18 are tough.  In my race we call it the gauntlet because of the stretch of road it’s on.  There’s not much out there.  The crowds have thinned and the sun is usually beating down by down.  The pavement seems harder and the little pains start to scream.  Other pains start in new places and it’s pretty miserable.  You try to find things to keep your pace up like someone with a garden hose or a bowl of orange slices and try your best to not think about the fact that you have 9 more miles to go.
Then something happens around mile 19.  You head out of the gauntlet and into a subdivision full of cheering people.  There’s a band playing a song you really like, the aches and pains start to numb and you find a new wind that takes you through the next few of miles.
Then you get to mile 24.  Only two more miles to go!  And all of those aches and pains hit all at once and the heat is beating harder than ever.  Two. more. miles. to. go.  and it feels like it will be the longest two miles you’ve ever had to go.
Miles 25 starts to lighten up a bit and you focus on everything you can to get through this mile. Breath, cheering, music, trees, birds in the sky.  Whatever. And you find a little somethin to pick up the pace a bit.
And then you finally cross 26.  You can’t believe you made it.  You start to run.  You forget every blister, ache and pain and just head to that finish line.  Two tenths of a mile isn’t very far, but seems like another mile after 26.  But you run and run as fast as your beaten legs can take you and euphorically cross that finish line in a blur.  And any tears that come are from pure joy and you smile.

I got to thinking about that experience when this all started happening and it’s funny because a friend mentioned it too…
This is a marathon I didn’t sign up for but I’m suddenly in the corral. I will probably get a little banged up along the way and it’s not going to be easy, but I’m pretty sure I can do it.

Getting closer

Not a definite answer yet, but last night’s CT scan showed masses on my ovaries.  Still waiting on a blood test and will have an appointment with an oncologist gynecologist (Do they have a special name?) hopefully this week.  While I’m not excited about the prospect of having ovarian cancer, it does bring some relief in getting answers.

This news brings a lot of emotions.
Whatever happens from this point forward, one thing is certain (and the Dr agreed) is that I will not be able to have children.
At the end of last summer, MJ and I had started pursuing an addition to our family.  I had always wanted to have a child and felt like this would be a good time to start trying.  The funny thing in all of this is that I had gone to the Dr. in November to get everything checked out.  I had a ultrasound 2 years ago that showed I had fibroids and wanted to be sure that wasn’t going to be a problem.  I had all kinds of blood work done and tests and everything seemed to be OK.  The only thing they didn’t do was rescan my uterus because it has only been 2 years.  I never would’ve imagined all of this starting just a month later.
While I’m sad that I will never have a biological child, I’m grateful and thankful that I get to share in the lives of MJ’s kids and they will always have a place in my heart as my own.
And going through all of the stages of greif in one afternoon, I’m also angry.  I’m frustrated that I’ve had issues with this and we didn’t find anything until now.  I don’t fault anyone for it, but it’s just the emotions I need to work through.  It’s a lot to not only find out that you won’t be able to have a child but that you now may have a disease that could kill you.  And at the very least make you incredibly sick.

I’m a little down with this news, but I’m not giving in.  There are still more tests to be done and questions to be answered.  One day at a time.

I will keep everyone updated as news comes in.  I so appreciate all of your support and love.

So start practicing those poses, warriors.  Looks like we likely have a fight on our hands!

So far, so good

Met with a liver specialist today.
He showed me pictures from the scans last week and explained a whole bunch of stuff that I’m not sure I completely processed.  He did tell me I had nice pictures.  From someone who looks like he’s been doing this awhile, I’ll take that as a compliment 😀
What I did get out of it is that he confirmed based on a few things that he doesn’t feel that the lesions are primary liver cancer.  Which is very good.  He said my kidneys, spleen, pancreas and the bowls he could see all look very good.  I got to see the gallstone in my gallbladder, but other than the stone he said that looks good too.  Chest x-rays looked clear.

This was all very good news to hear.  Don’t have an answer yet, but I like that were moving ahead.
The next step he said was to get results from more blood panels and the second CT scan which I did both tonight, so hopefully there will be more results tomorrow.  If the blood tests come back abnormal then it’s colonoscopy time!  Whoo hoo!  If they come back in somewhat normal range then I’m looking at a liver biopsy.  In my brief stray to webmd the other night, there were things I read that lead me to suspect the colon.  (don’t worry, I’ve resisted going back)  Guess well see.

So were moving forward.  One day at a time.

It’s hard to do a warrior pose in a hospital gown moo moo.

Up and down

I managed to go back to sleep after my last post and this morning I felt the best I’ve felt in at least 2 weeks.  I had energy, spirits were up, anxiety down.  It was good.
We headed to church and it was peaceful to be surrounded with such a wonderful family.  And when it was time for the sermon, here’s what it was…

HA!  Thanks, Pastor Tim.  Certainly needed that today.

Had a nice peaceful afternoon with the family and all was well until about 6.  I started going downhill.  Right now, I’m pretty sick.  And like I said, this is the hard part of not knowing what’s going on.  It kinda feels like that smoke monster from LOST is after me.  Not sure what it is, but it’s scary as fuck.  And without a plan of attack I feel defenseless.  Hopefully we’ll have more answers tomorrow than we do today and Tuesday we’ll hopefully know more than we will on Monday.
In the mean time, I have incredible support from family and friends and an amazingly strong wife who I know is right by my side.  Up or down.

It’s just mean

It’s just mean

Telling someone that they “likely” have cancer and then make them wait 4 or 5 days for the next step is quite cruel.  I am extremely grateful that I have great health care and local expert services, but I’m still human.  I still have a wondering mind and as positive as I’m trying to remain it will still wonder “there”.
When I’m feeling OK it’s all good, of course.  No problem. Let’s go do some errands.  Get stuff done, make the day go by faster.  But when the yuk starts kicking in it’s a little more difficult.  It’s the subtle reminder that there’s something wrong. Something that could be quite seriously wrong.  But what is it?  And if it really is cancer, GET IT OUT OF ME!  And all of that is a little to much to have bouncing around in your brain while your pushing the cart around Costco.  I felt like a crazy person today.  Trying to stay focus but looking around at people wondering if they ever had cancer and if this isn’t then what’s making me so sick and why are pears so expensive here?

This picture is of the Porter T stop in Boston, MA.  I used to take the train to work and there were many days that this was my exact view as I sat and waited.  I’m reminded of this place because somedays I would have to wait awhile and I would get very impatient cause I needed to get to work.  What I didn’t always do was have a look around.  It’s actually a unique station.  I wouldn’t call it beautiful, but interesting.  And sometimes, there would be others waiting with me who were fun to talk to.
I’m ready to get to work, but I have a couple more days in the station.  I’ll try and make the best of it.

After we ran errands today we met up with some wonderful friends, cooked dinner together, watched an episode of RuPaul’s Drag Race and a documentary,  It was everything I needed to put my bouncing brain back into place.  It also made me tired enough to crash out when we got home.
I’m not sure why I’m up at this hour.  I woke up at 5:30 and couldn’t sleep.  Not because I’m anxious or anything.  I feel quite good right now.  I’m just up.  Hopefully I can get a few more winks in before church.