Past half way

Well, I hit the half way point on my chemo/radiation treatment on Thursday.  Eighteen more treatments left.  I think.  Hard to keep track and I am leery of the milestone as I am told that the side effects will start happening soon and get worse.  Of course I might not have any but it would be foolhardy to think that I will get out of this unscathed.
I am suppose to have diarrhea from the radiation but I do stuff different.  I had constipation.  If you ever thought that I was full of shit, last week you would have been 100% correct.  Cramping. bloating, you name it.  It was awful.  Prunes and fluids got things moving finally again.  No problems since.  Knock on wood.
I am at work now doing my 11a-11p shift.   I work Friday through Monday and then on Wednesday.  Thursday starts my week off.  This is my first weekend back since the angiogram.  Everyone is wearing the "No one fights alone" cancer wrist bands and I am consistently being asked how I am.  It bears repeating that I love the people I work with!
Work has been OK physically.  I am a bit tired and nauseated but I had that anyway.
I am currently at 2000 mg a day for my chemo, that is down from my original starting dose of 3500 mg but up from 1000 mg.  Monday maybe we will increase the dose again.  I carry a bottle of Nitro tabs with me and I am hyper vigilant about asking myself if I have chest pain.  Every ache and pain gets analyzed.  Way over analyzed.
All in all, things are going OK right now.  Definitely manageable.  I can expound on what I've learned as far as dealing with my toileting issues but I'll spare you.

      

Doubling the dose

I went to see Dr. Gold on Monday. This was after my lab draw which was a horrible affair, it took them three sticks to get it and blew my veins every time.  Since I am not having any chest pain we have decided to double the dose of my chemo by slowly ramping it up today and Wednesday. By Thursday I should be at 2000 mg instead of my full dose of 3500 mg but this is better than nothing and definitely moving in the right direction. Next week if I don't have any chest pain we should be able to increase the dose again and get me back to full strength.  

We are still talking about our plan as far as after surgery goes we are not sure what medicines I'm going to be on till they check out my lymph nodes. But it sounds like I'll be needing infusion chemotherapy.  We will just have to take a wait and see approach. Either way it is the surgery that really is the key to all of this.  

My friends at work have gotten to wearing armbands to help support me through this. 

I seriously work with some of the best people in the world!  Love those guys!

I had treatment number 12 today at radiation. I think I have 13 left. I believe tomorrow will be halfway.  I'm having minimal side effects currently and hopefully that will continue for a while. My hip joints ache but so far that is it.  I know it can get way worse but you never know and so we will take this, as I've always said, one day at a time.

I would like to thank everyone for writing comments and posting on Facebook.  I am trying to write back to everyone because after all you took the time to write to me and I should do the same to you. I'm just a little behind.  I am not sure why this blog does not want some people to post comments. It is a rather buggy program especially when you are trying to post.

Thanks again for all the support, encouragement and love. It is very very helpful to me and I really enjoy getting the emails and texts. 

Post weekend

21 more treatments left. Hips ache but no other side effects. Yet.
Dr Gold put me on Cardizem to protect against coronary spasm and I'll start my chemo pill tonight. One pill instead of 3. In the morning I take another pill. 1000mg daily. I was at 3500mg. If I have chest pain, I'm to take nitro and stop taking Xeloda. Forever. So easy does it. If no problems after one week, increase dose. Maybe. So we'll see.
As far as post surgery chemo, I'm not sure. If my lymph nodes are involved, then it can get ugly. Bolus 5FU chemo supposedly does not cause heart problems but you aren't getting the long soak that chemo needs to kill all the micro cancers running around. If they are indeed doing that.
So one day at a time.
To quote a movie:
"This is me breathing..."

Thank God it's Friday! Or maybe not...

Friday marked day five of chemo and radiation.   I like to check things off and I was looking forward to checking one week of chemo DONE!  But Thursday had to happen first.

I finished chemo and radiation on Thursday and my buddy Pete was in town to visit.  He offered to drive me to and fro.  The treatment went without a hitch but I was having more than the normal amount of belching.  I didn't think much of it and after the treatment, Pete and I headed to check on Appa.  

We started the engine and the fumes were hurting my lungs, even the cold air was hurting them.  That was something new.  I was also quite nauseated.  That is not new.  Monday and Tuesday were hallmarked by extreme nausea.  It was handled well by the meds I was prescribed, but I hate taking medicines to counteract other meds.  No matter the Zofran did it's job on the nausea and I was OK.  Wednesday I even worked an 11 hour shift after radiation.

So Pete and buttoned up the boat and I went home to register for school.  After that we headed to Hales BrewPub for food.  Met David and Scott there and ate.  I had no appetite and ate one corner of my sandwich.  I was having heartburn really bad. 

Once I got home I laid on the couch and chilled out.  The burning and the pressure in my chest was intense.  I took some home remedy for heartburn and that quieted it down quite a bit.  By 3pm I was ready to take the kids to gymnastics.  Once at gymnastics, I felt fine except for occasionally heartburn and I popped a couple of those home heartburn pills and was OK.

We ate dinner at CYC and had some chicken sesame with soy sauce.  After I ate that, I felt the heartburn rises up again.  By the time I got home, it was pretty bad.

I googled Xeolda and heartburn and landed on this young woman's blog about her dealings with some sort of cancer that maybe started in her gallbladder but they weren't sure.  It was a good read and as I flipped through the blog pages I accidentally came to the last post of the blog.  A Memorial Post to the author by her heartbroken sister.  She fought so hard and that damn cancer was aggressive as hell. That broke me down some.  I hate reading about cancer.  HATE IT.  And here we are, you reading and me writing. 

Anyway, all friday morning I can't sleep.  Chest is burning and nausea is kinda messing with me.  Just miserable.  I finally fell asleep around 6am and woke at 730am.  Got up and the heartburn kicked in by the time I got downstairs.  This time is was serious.

This is actually my chest.  Flames are real.  

 It was unreal how painful that was.  Brought me right to my knees and then would let up.  Never had nothing like that.  Don't want it again.  The ride to radiation was hard but we made it.  I walked into the office and told them I was having heartburn and could I take something.  Dr Mehta took one look at me and sent me to the Swedish First Hill Emergency Department.  There I got an IV, 12 lead EKG, Chest X Ray and cardiac enzymes drawn.  When the heart gets damaged from either blunt trauma or lack of oxygen, it will release an enzyme called troponin.  They were looking for the enzyme.  I also got Pepcid in my IV but that didn't really help my pain.

Dr Gold visited me there and said it looks like I am the 1% of people that get coronary spasm from the Xeloda.  I was all like, No No No.  Not me.  I'm not the guy.  I love this med.  Noooooooooo.

So the deal is, if you get coronary spasm from taking Xeloda, you have to stop it.   Dr Gold says, "It isn't optimal."  Meaning I have to stop the one drug that pushes my chances of survival into a "Good" percentage.  So all is not lost he says and goes with "We will might start it again on Monday once they make sure that your heart is ok.  Monday.  Start with Monday."  Then he grabs me and says "It will be OK."  Or something like that.  I had a hard time staying focused.  Hell this guy could have been in the room asking me:

Yo Marcus!  You need a giraffe?

That was some stressful time there.

All results were normal except for the troponin.  It was 0.07.  Which really means nothing but with our family history of heart problems and the pain I was having, they admitted me so they could check another troponin in 3 hours, 6 hours and then in the morning.  My EKG was slightly different from the one I had on New Year's Eve at work but only slightly.  They started to work on getting me a bed.

Radiation got pushed back to 330pm and I went upstairs to my new private room.  I got settled in and they redrew my blood while up there.  Troponin comes back 0.18!  That isn't suppose to happen.  That is not on my list.  Not part of the plan.  The RN says that 0.2 is the number that would be troublesome and I say, "Well, it is next!"  God I was mad.  I can't get through ONE WEEK of chemo with radiation without some bullshit happening.  Here I am admitted to the hospital for a possible heart attack.  I was barely holding it together.

I went and had radiation which was fine.  Got back to my room and slept till they drew my blood at 8pm for my next troponin test.  Blood tucked into the tube and sent on it's way to lab.  I wait...and worry.  Pete is suppose to show up with Kalie's Deep Dish Pizza.  He brought along David, Chris, Jeremy.  Shortly after Shaun with her brood showed up.  Pizza got eaten and then we waited for the 915pm troponin results.

If this troponin was to be elevated, I would be officially having a "cardiac event".  Maybe not a heart attack but injury was definitely occurring.  This also meant that the test for heart attack would stop being so easy like a blood draw.  The next test for me would be an angiogram.  Basically they thread a tube from your radial artery in your wrist or femoral artery in your leg up to the tip of your heart.  Then they inject dye that X-rays can see into the blood stream going to heart.  This lights up the arteries feeding your heart oxygenated blood.  If one of these babies becomes blocked... 

HEART ATTACK!!!!!!!!!!!!!!!!!!!!!!

 They leave the x ray turned on and it is like a movie of your blood running through your heart.  Blockages are easily seen and the slightly clogged ones are also.  It is really cool.  Unless you are on the table.
Finally the RN walks in and starts getting medicines ready for me.  Oh Oh.  What's the trop?  I ask.   0.24.  I know how to kill a party!!!!  Everyone is silent.  Damnit.  The RN asks if I want an Ativan.  Uh, yes please!  Duh!
My buddy Chris spends the night and at 8am I have another blood draw.  I worry about this all night.  I can't take the chemo that might save me.  The proven chemo.  The one that the studies are based on.  Why in the name of all that is Holy is this happening?  I am one of a few Americans (generally speaking) that get this cancer under the age of 50.  THEN I get to be the 1% that can't take the very drug that can hopefully save me.  My God.  I turn my head on my pillow and before Ativan thankfully allows me drop off to sleep, I remember that I have to do an angiogram later because I am officially having a "cardiac event."  <sigh>
I wake up after a 3 hour nap and it is 7am.  I go out the the front desk and I hear my nurse talking to someone on the phone.  Jennifer.  She is talking with my wife.  I go back to bed and then the RN walks in.  The troponin from last night doesn't impress the doctor.  He is going to send me home immediately after the next troponin result as long as it is lower.  Blood gets drawn five minutes later.
My life has come down to this.  Waiting.  Waiting on test results.  And guess what?  For the next 60 months, I get to wait for the test result that tells me if cancer is back.  And after 5 years?  I get to do 10 more.
Thirty minutes later, Bethany the RN sprints in the door (uh oh) and I ask her if the results are back,  the cardiologist is right behind here.  0.35!  It is explained that I am having a ST elevation MI.  ECG changes with small ST elevations along with a 0.35 troponin mean I am having a heart attack.   Ambulance is here in 5 minutes.  I got another IV placed in my arm and then off I go to the cardiac hospital of Swedish Medical Center.  Cherry Hill!

Yes!  I am texting!

We do lights and sirens to the hospital.  Rushed into the cath lab and they start prepping me for my cardiac cath.  Shaved my wrist because they can use the radial artery and they shaved my groin.  Both sides.  In case the wrist didn't work.  I have a mohawk down there.  No kidding.
If I have blockage in my heart they put a stent in it to open it back up.  Most stents require the patient to be on blood thinners to help the stent do it's job.  You have to take these for 6 months.  So if I have to have a stent, I have to delay getting the malignant, treacherous, deadly lump of steaming evil out of me by three to four months.  That is not optimal.  The treasonous piece of garbage will have 4 more months to grow and spread that crap everywhere.
On the table they manage to thread the catheter up my radial artery up my arm and all the way to my heart.  Xrays are burning through my body like crazy.  Let's see now, I have had in the past 2 days, 2 chest xrays, the cardiac xray series, and every 5 out of 7 days I get burned with a giant linear radiation gun.  Sounds about right.
Long story longer.  Clear.  My arteries in my heart are all 100% wide open for business.  My blood flows better than Seattle's traffic.  Wait...is that a good comparison?
When I get the news, I am happy but if all the arteries are open then what is bumping the troponin.  The doctors then order an Echocardiogram.  This test can see how well your heart pumps the blood through the heart and check for fluid around the heart.  BAM!  Everything is 100% open and running like a clock and no water around the heart.  NICE!
So the differential diagnosis are pericarditis and coronary artery spasm.  Maybe a couple more but I cannot remember.
I might not know what is going on exactly but I know this.  I am going to see Dr Gold Monday and talk about the Xeloda.  I need to be on that drug.  Physically and mentally.  If I can't take it, I will feel defeated.  Defeated by my own body.  I fell like yelling at my body...

 Unfortunately Dr Gold firmly believes that this is Spasm Syndrome.  I kinda feel that way also.
The way forward will be trying a calcium channel blocker like Cardizem or Amlodipine.  These reduce the chance of coronary spasm by relaxing heart muscles.  It also drops your heart rate.  Have to be careful with this medicine though.  Then I will start low dose Xeloda (not optimal, I need 3500mg every day) and if I start have chest pain...no Xeloda.  
Been harding writing this blog.  All of them have.  I get so angry.  Most of the time I'm writing these, Sam is playing around me in her magic world she can go to, Ben is around in some shape, wife off doing something but close by.  Family is near me and I feel that being taken away, piece by piece.  I can stand at the kid's rooms and listen to them breathing while they sleep for hours.  
I know I can't dwell on it but how can I defeat something when I don't have the right tools?  Sub-optimally I guess.  Great.  Just fucking great.
Monday.  One day at a time.

Monday it starts...

Yesterday (Monday the 29th) was beam verification day at Swedish cancer care.  Basically they take the computer model of my cancer that was made last week (that included another probing) and compare it to the real deal lying on the radiation table. I lie prone on this table that has a cut out for my belly which allows my small intestines to drop down and that allows the ionized radiation to only hit the cancer.  Mostly.  Now my radiation oncologist Dr Mehta will compare images and then can make adjustments before I start getting hit with the real deal.

This all starts next Monday. It was suppose to be today but I'm waiting on my insurance to approve the chemo pills I'll be taking.  Six weeks of chemo ain't cheap.  I have to take the chemo pills and the radiation on the same day. They compliment each other.   Miss a day of chemo and I have to miss radiation. 

My chances of survival are directly linked to how much of this I can take.  If I have to have them lower the radiation dose or the chemo dose due to side effects, well, I am not sure what happens. I know that the journals that I have read all say that treatment is best when it is completed and at full strength. The side effects are awful and everyone is different when it comes to how they react to the treatment.

I should also say that I went with Swedish Cancer Care after two really good appointments with Dr Gold my new oncologist and Dr Mehta my radiation oncologist.  Both have given me hope and are very confident people. The staff that works with these two are very nice and go out of their way to help me.  I went with Swedish because I feel I'll get a bit more attention because I work with these people. I know the doctors and nurses there and it feels like family.  The folks that I work with at the Ballard ER have been nothing short of amazing. I am proud to work with them.  

I worked all weekend and then took Monday night off. I thought that I would have trouble sleeping during the day and not be able to work well at night.  Well hell. I should have worked. I can't sleep.  Jen went downstairs to sleep as I am keeping her up.  I am looking for diversions and watching Parks and Recreation on Amazon helps. I need to laugh. My mind won't shut off. Constantly working.  Doesn't help that I read a bunch about my upcoming surgery and the treatment side effects. I broke my rule about Google and cancer. Just couldn't help myself. 

So here I am at 0436 Tuesday morning, awake with a stomach that feels like I have fire in it and eyes that have glass in them.  I just can't get over the feeling that...like I said, my mind will not shut off. Maybe this will get better once I start treatment.  Monday Monday. Can't trust that day. 

Jen took me to radiation Monday and when we told Sam that I was going to the doctor I heard her ask "What's wrong with daddy?"  I haven't told her really anything. Not sure if she'd understand. She knows sick but does she know this type of sick.  I didn't listen to Jen's response to her question. Some things are still too hard to do.
Saw my regular doctor today and have two spots on my skin that are cancerous.  I have to wait till chemo and radiation is done before they can remove them.  

I have friends who have battled cancer and are still around. I have been asking them only questions about how the chemo affected them or if they got sick from radiation.  I haven't asked them about how they have dealt with this mentally. Some of these friends have young children and I imagine their emotions are running like mine. We are having dinner with a rectal cancer survivor on the 1st.  I believe she is at 5 years now. Doing well. Gonna ask her how she dealt with this. 

Maybe I should follow the advice given down below.

I feel like I bitch too much about this.  I should suck it up some and quit crying about this. Yes cancer sucks. And yes, it is unfair that I got this while so many others treat their bodies like a rental car.  It is what it is.
This blog post has been days in the making.  It started on December 30th and right now it is January 1st.  Got a letter yesterday from my insurance company.  They are refusing to cover my chemotherapy.  The letter states that I am not sick enough for chemo.  I imagine that this is pretty typical but I really don't need this.  Friday I'll call the doctor and the insurance company.  If this delays my treatment more, I am going to scream.  Actually I already did that.  Now I'll wait for Friday and go from there.
2015 is going to suck.