Not for the faint of heart...

So.  It's been a about a week and a half since my diagnosis.  I still have a hard time saying the word.  Cancer.

It's not that I am afraid of it really.  It's more like I am upset with it changing my life around.  My best friends would tell you I'm stubborn, and they would be right.  I don't want to give up the things I do, and like doing.  I may have said that before, but nothing wrong with saying it again!

Things are moving quickly.  So here's the stuff that's not for the faint of heart (it's not horrible, but some people don't like hearing some of this).  Some updates of how things have gone.

Since the diagnosis, I have had a blood transfusion because I am anemic.  I also had a colonoscopy.  I do have blockage in my colon, so I am limiting my diet to liquid and mostly soft foods.  That means homemade or store bought shakes and smoothies, very tender meats and veggies, soups, puddings, and Italian ice.  People have been bringing meals, setup by a dear friend, and it has been a blessing.  Some of my hospital/doctor visits have been longer than expected, and it has been nice not to have to come home and worry about dinner!  I still enjoy some regular foods, but I chew longer, and take colace to help keep things...um...soft.

4 days after the diagnosis, I had a mediport put in.  I did mention that in my last post.  The surgery for that went well, and I now tell people I am bionic!   It's pretty cool, in a way.  Instead of getting an IV every time, they can administer right through the port (which is just under the skin, and sewn onto my muscle in my right chest), and draw blood too.  The little poke of the access needle is way better than the IV.

My first chemo treatment was 2 days before Christmas (a Monday).  I go to the infusion center, where they do bloodwork before they access my port, and run the chemotherapy drugs for about 2 hours.  After that a nurse hooks me up to my portable pump (and a stylish fanny pack to go with it), which I then wear for 46 hours.  However, when they did my bloodwork, they wanted to set me up for another transfusion, as my counts were pretty low.  It wasn't anything to worry about before the chemo, so they set that up for Thursday, after Christmas.

Tuesday, Christmas Eve, wasn't bad, but I was starting to feel a lot of back and abdominal pain.  The Tylenol, and the pain meds I was prescribed, weren't cutting it.  I made it through the Christmas Eve service at church, but had to bow out of a Christmas Eve get together at a friends house.  It was getting worse. I didn't sleep at all that night, but unfortunately not because I was excited about Christmas morning.

The next day, Christmas, was the day that another nurse was to come and de-access my pump (they are trained in the whole sterile procedure).  Adam had a good morning, but for me, the pain, and nausea now, was getting worse.  Those are side effects of the chemo, but I didn't think it was going to get that bad.  They hadn't given me any anti-nausea meds for home, so I was just trying to power through it.  I didn't eat or drink anything all day.  The visiting nurse tried to reach the doctors on call, but couldn't work out a way for me to get a prescription for any stronger pain or nausea meds.  So, I made it through the day, and my sister in law brought Christmas to us, since we hadn't been able to travel to their house that day.  I was grateful that she brought food, but when Lisa went to eat some of it, it was all I could do to not vomit from the smell.  And not many smells bother me.

So I made it through the night, not sleeping much again, but at least being de-accessed gave me some relief.  At the cancer center the next day, we told them about the pain and nausea, and during my stay they were able to give me some nausea meds via my port, and a scrip to get some for home in tablet form.  They also gave me some pain meds via the port, and upped what I could take at home, and between that, the blood transfusion, and a liter of saline, I felt no pain, and better than I had in weeks.  Lisa got me a cheeseburger from the hospital café, and I ate that, along with some apple juice and a small diet soda.  I felt so good being able to eat!

Unfortunately, on the ride home, the cheeseburger decided to make another appearance!  I guess I had just overloaded my system a bit.  But after getting home, I still felt better, and was able to stomach some great turkey soup from a friend, along with some jello.  That stayed down.  However, I then had to fast starting at midnight, because the next day, Friday (today as I write this), I was to have an endoscopy, so they could "clear" that area as the origin of the cancer.  Thankfully, I was able to sleep, so that wasn't too hard!

So today, the endoscopy went well, and there are no signs of the cancer in my esophagus or stomach!  A friend of Lisa's went with us, for support.  I don't remember much between the time they sedated me and waking up in the recovery, other than a little bit of gagging!  But afterwards (and before), the nurses and staff were awesome.  After we left, we took our friend to lunch at Wegmans (I love Wegmans...), and then headed home.  When we arrived to drop off the friend, her husband had a cancer-fighting soup ready for us to take home - along with some bacon to enjoy with it!

So far our medical experiences (other than the reason for being there) have been awesome.  I am so happy with the Doctors we are working with, and I'd like to think my attitude has something to do with it.  

Though I am always honest, I don't find shame or sadness in my predicament.  I think that sometimes I surprise the nurses, or doctors, with my positive attitude.  Good will come of this, somehow, even if it's by the way of other people finding a way to serve others.  Not that I am asking to be served - but if God uses this that way, then Hallelujah!  We have been so blessed by the people around us, in the community, in the school, and especially in our church.  And we still want to turn around and spread that love to others.  It's how it should be.

So, the next week should be pretty "normal," I hope.  No appointments for me, no procedures, and no commitments - other than the things I want to get done for home and school, of course!  My body needs to recuperate before the next treatment - which I am hoping I can stay on top of the pain and nausea, now that I know how it's going to hit me.  I have to take more iron, and try to keep all my Nutritionals up, as the chemo will do weird things to my digestive system too.  I won't even begin to list all the stuff I am taking!

At any rate, if you made it this far, thanks for reading!  I ask that you keep us in your prayers - despite my attitude, this isn't an easy time.  There will still be challenges for us, and I thank you all in advance for the support and help you give.  But again - don't be sad for me; don't tell me you're sorry.  Just love me, however that works for you.  I restate my own mission statement during this time...

God is good.

I will be healed.

I will run again.

Truth.

I love you all.

The new normal...for now.

I am really hoping that soon I will be able to have a "new normal."  The past two weeks have been filled with tests or procedures, most often scheduled at a moments notice.  The last step before new normal, I think, we will be getting my Mediport.  After that, it seems like I will be on a two week "schedule" of chemotherapy.  The new normal.

The new normal will include wearing a pump for 46 hours, to get the rest of the meds after the initial office-visit dose.

The new normal will include me being an advocate for "getting yourself checked the heck out" when you are sick.  Don't expect me to sit back and watch you get worse.

The new normal will include me being a witness to God's love; I want to tell people about my relationship with Christ.

The new normal may mean me getting rides from different folks.  Maybe witnessing to them.

In the meantime...

I will not lie to you.  If you ask me how I'm doing - be prepared for an honest answer.
I will keep teaching; and learning; and playing when I can.  Music is God's gift to me.  He will use it to lift me up, and use me to glorify him with my talent.
I am still me.  Please treat me that way.  I am not a debilitated, withering soul.

I also don't want you, readers, to say...

"I'm sorry."  Because I may ask you what you did to cause my cancer.  Don't be sorry.
"How awful."  Maybe.  But I don't want negativity around me.
"Why you?"  W e l l . . . if not me, then who would you wish it on?
"Cancer sucks."  Maybe.  But I don't want negativity around me.
(I think you get the picture).

Those things may be true to you, but I am refusing to look at it that way.  Am I in pain?  Yes.  Am I scared.  A little.  I understand you all cope with these things in different ways.  But I am using it to God's glory, somehow.

Maybe God will use this situation (and note, he didn't cause it.  NO ONE DID!) so that I could be blessed by others.  Maybe so that others could step forward and use their gifts and talents to help me, and my family.  Maybe God will use me to bolster someone else, or witness to my doctors and nurses and aides and phlebotomists and secretaries and...you get the idea.

Right now, I am believing in four truths.

God is Good.
I will be healed.
I.  Will.  Run.  Again.
Truth:

When Jesus was about to be captured, tortured, and crucified, he prayed to God  He was scared, I imagine - despite being God, he came to us as man, and knew men's fears and trials.  

Luke 22: 41-42:
He withdrew about a stone’s throw beyond them, knelt down and prayed, “Father, if you are willing, take this cup from me; yet not my will, but yours be done.”

By the way, my oncologist said I can be as normal as possible when it comes to physical activity:

O: "You can get out and walk, and be active.  I mean, I wouldn't run any marathons any time soon..."
Me:  "I'll take that as a challenge."

The new normal.

And the winner is...

Colon cancer.  Traveled to liver and lymph nodes.

Yep.  Somehow I knew.  But I am at peace.

The process from here?

Today I am getting a blood transfusion to deal with the anemic symptoms I've been having (dizziness, short of breath, fatigue, mostly when exerting myself running, lifting, etc).

Sometime in the next two days I will have a colonoscopy, and meet with a surgeon who will be putting in a Mediport.  The Mediport will be in by the end of the week, and will be how I receive chemotherapy meds.

Chemotherapy will start next week.  I get infused in a hospital, and then wear a pump for 46 hours.  This will happen every 2 weeks, until such time that they feel they must change course, either with different drugs, or surgery.

I am thankful that the first round will happen over Christmas vacation. That may mean that I am tired at Christmas, but I can deal with that.  

Just from the appointment today, I have a better peace, knowing what's going on.  I really have a good feeling about our doctor, and the things that she had to say today.

Over the next few weeks months or years, I may be asking for rides and help. I already know that you all are saying yes.

This is still a scary time for us, but thank you for all of your prayers, well wishes, and words of support.  We are still praying for a miracle, and for God's will to be done in our lives.

Dear Dad...(an open letter)

Dear Dad,

It's been seven years since God took you home, but I wanted to write you this letter, and let you know how things have been going.

First, I miss you.  I never realized how HARD it was to be a parent sometimes.  Or a spouse.  But I wouldn't change one minute of it.  As much as you and mom had your problems, I know neither of you stopped loving me, or Bill or Lisa.  Thank you for being my Dad.  I am more like you than I realize, I think!  I hear things coming out of my mouth that sound like you...!

Adam is such a good boy.  You would enjoy him so much.  He's so smart, and caring, and loves being a kid.  We tell him about you.  He's 7 now, of course, and in first grade.  You'd be amazed at the things he knows, and says.  Everyone says he looks a lot like me.  Hopefully that's a good thing.

Lisa and I are having a rough time right now though.  Not in our marriage - don't worry about that.

After you left us, I started eating right, and exercising, and I lost 150 pounds.  I started running, and even ran a full marathon!  But over the last year or so Dad, I have been easily fatigued and I couldn't run anymore.  I had been training for another marathon 2 Septembers ago, and I just couldn't finish a short training run.  I did end up finishing a half-marathon, but after that, I just took a break from running for a few months.  When we started up our Spring session of Run for God, I thought maybe I could get back in, but I still had the weakness, dizziness, and fatigue issues.  I chalked it up to gaining a little weight and not running very much.

Well, a little before Halloween this year I started having back pain, and I thought maybe I had just strained something.  It didn't go away, so I just took tylenol, and ibuprofen to get through the days.  Eventually I started feeling some abdominal pain, and again, I thought I just had tweaked something enough that the muscles in my back were effecting my front.

Well, last Tuesday, a week ago now, I had so much pain, I decided I needed to get in to a doctor.  I ended up getting X-Rays, and Ultrasound (no I'm not pregnant), and a CT scan.

Yesterday Lisa and I met with our doctor.  She says I have some "concerning masses" in my liver and colon.  She said my lymph nodes were abnormal, and that my Red Blood Cell count was too low, and I was anemic.  I have a call in to the oncologists in the area (which are some of the best), and am awaiting their call for an appointment.  Until then, we don't have a course of action, other than some pain meds so I can sleep, and to take iron so my count comes up.

Dad...I'm scared.  Not for me, really, but for my family.  I want to be able to take care of them, and still provide for them.  I want to still be able to perform at my job, and fulfill my responsibilities.  I don't want to burden anyone with anything that I have to go through.

I can't help but think that a lot of the same things went through your head, Dad.  Even through everything, you seemed so strong.  How did you do it?

I have a great support network here, Dad.  Lisa has already told me we are going to accept help when offered.  I guess I should listen!  Our pastor, Randy, sat with us last night and talked, and shared, and prayed with us.  Everyone we know has offered help with whatever is needed.  Makes me wonder if I can get them to do some projects for me!

At any rate, it's concert week for me at school.  Though I am home today, my first thought is not for myself - I need to get my students through this first concert of the year, and after that, I will worry about what my plan is.

That's really it for now, Dad.  Like I said, I miss you.  I could really use your voice and guidance right now.  

Wayne

Perfect timing...

Sometimes we want things to happen in OUR time frame.  Hah!  Little good that does us.

Two Septembers ago, I had some kind if sudden onset of fatigue while I was doing a short run in marathon training.  I cut the run, and the marathon training short. I did however, continue to do a half marathon that September. After that, I cut my running significantly. When we started our next Run for God program the following March, I felt very fatigued, out of breath, dizzy, and could not keep up.

The last two months or so, I've been having a lot of back and abdominal pain.  After a particularly bad day on Tuesday, I decided to call the doctor and get an appointment.  They ordered an ultrasound, and an x-ray, and bloodwork.

Now mind you, it's concert time for me. I have a concert next week, and would hate to miss any part of it, for anything.   I don't like being absent at my job, and I don't like missing the things that I feel like I need to do.  Plus, whenever anything medical comes up, all I can see are $'s.

I received a call shortly after my ultrasound yesterday, to discuss the results with my doctor.  It turns out that I have an enlarged liver, and they don't know the reason...yet.

So now I await the call to set up a CT scan, hopefully today.  I'm fasting, just in case I need to do that.  Man, I'm hungry.

Perfect timing, Huh?  I know there are people that can and will help if needed, but it's not like I am incapacitated.  In fact I feel better today than I have in a while.

Somehow, I am remaining the calm one.

Hepatitis.  Fatty liver Disease.  Those seem to be the most common.  I'm not a heavy drinker (or a drinker at all, really).  What gets me is I feel like I may have done this to myself.

I have been known to binge eat.  Introducing sugars into my body in large quantities.  That happened occasionally over the last few months.

Also - when I started feeling this fatigue, dizziness, and weakness in March, I thought maybe I had an iron deficiency.  So I started taking some iron.  Not every day, but often.  What if doing either of those things brought this on?  Then I only have myself to blame.

Which is perhaps why I'm calm.  I can't get upset at anyone else.  I know God wouldn't do this to me.  But somehow, he'll use me, and my situation, for good.  Even if it's changing my own habits for the better...again.

I know one thing.  It's not my timing.  God has perfect timing, and he will set me up to do what needs to be done at just the right moment.

People have asked what they can do for me (us) already.  Again - I'm not incapacitated.  If I need help, I won't be afraid to ask.  But if you are reading this, friends, and you pray, please pray....

That Lisa and Adam are comforted.  That we and the doctors can make the right decisions, and that I can be used to show the glory of God, even through pain, and hardship.  That I make it less about me, and more about others.

And friends, and family...if you are just hearing about this, it's because I just found out.  If you want to call or text, send me a message somehow, and I'll give you my number.