How Are You Doing?

One of the main questions I get every day is "How are you doing?" Most of the time the answer is, I am fine. I still don't have any symptoms, and I don't expect to have any. I am still working full time, and I don't see any changes in that either. I still chase the girls, put on training wheels, mow the lawn (yes, mow the lawn in March in WI), do laundry, hug my wife, and all the other normal, day to day things. Most of the time I am fine, sometimes even doing pretty darn well.

But there are other times that are a little darker. There are times that I lie in bed and night and start having the "what if" thoughts. The "what if" thoughts are the ones about what if I will not be here for this event or that event in the life of my wife or kids ... Now these are not helpful thoughts, they are actually as frightening as can be, and getting out of the mindset of them takes a bit of work. Normally I have to physically leave the bedroom and go do something somewhere else (Thank God for Words With Friends!).

These are also the times when I am glad that no one is around to ask how I am doing, because the answer at those times is not good, not good at all.

But those moments pass, Scarlett yells out that she needs her pup-pup (a stuffed puppy she sleeps with and loses in her bed nearly every night and needs us to find as soon as her eyes open), Sierra pretends to be asleep until I sing her awake (a wonderfully annoying song I created that she pretends to not like, but still waits for it nearly every morning), breakfast needs to be made, Jen needs to be hugged (okay, maybe I need to be hugged and she is on the receiving end of it), and the sun comes out and things get better.

And then, once again, I am doing fine. I know that I have very good doctors, I know that I have a supportive church family that is there with me, I know that these new meds hold a lot of promise, and I know that I have a God who loves me and is walking with me hand in hand throughout this entire journey.

So if you ask me, "How are your doing?" I will be honest with the answer. I may be fine or I may have a bit longer of an answer, so be prepared :) And overall, thank you for asking, for I know that you ask out of concern and care for me, and I appreciate that more than you can imagine.

Looking for the Joy

With everything that has been going on for the past few days, it is real easy to get sucked down into the dark valleys of life. Spending time thinking about all of the "what if's," the things I may have to miss out on, the rearranging of the schedule, and the list can go on and on.

There are times like these when I really need to make myself look for the joys in life. For the joys are there, the blessings are there, the celebration is there ... Just sometimes it is hard to see because all of the negative things consume me and it is hard to get out of the rut.

That is why yesterday afternoon was such good medicine for me. After I get Sierra home from school I went out to the garage and put some training wheels on Sierra's old bike so that Scarlett could start to use it. When she came home she squealed with joy to have the chance to ride her "new" bike. As you can see in the picture above, she loved it.

It is moments like this that help me to see the joy. This is what is important in life, being able to spend time with my family, being able to help my girls grow, being able to hug my wife and share a quiet evening together.

So when the times seem dark, I try to think back to these moments to help get me out of the valleys. I know that there will be struggles and dark days, I know that there will be times I cannot pull myself out of it, but I also know that with the God who loves me and the friends and family who support and care for me, I will be able to see the joys and celebrate this gift of life in as full a way as possible.

Another Step

 So there was a little bit of a change in plans this morning. I talked with the oncology nurse and we will be waiting to start my new pill until after the biopsy results, so that will be the week after Easter.

At least both the radiation and chemo stuff will all be on the same page.

Below is a link to my sermon last week. In it I tell the congregation about my diagnosis and remind all of us how God continues to search us out and walk with us during our times of struggle. Enjoy.

http://emedialink.com/video/15462/We-Wish-to-See-Jesus-–-March-25-2012

Doctors, Tests, and What May Be A Plan

What a crazy four days it has been. From thinking I was doing a PET scan to get confirmation of no cancer, to being told I have cancer, to announcing it to the church and everybody else, to putting together a plan to move forward.

Phew, I am tired already and this is just the beginning.

Okay, here is where we are now. This morning Jen and I went to meet with the radiation oncologist. When I first got there the nurse clearly said that I wasn't supposed to be there (her way of saying that she was upset with the PET scan results as well.) I replied by letting her know that since my cancer is back that she needed to be nice to me, to which she responded by whacking me in the head with the file folder. I think that was a love tap :)

So we then met with the doctor, and again everyone is in shock that this has come back. The lungs are perfectly clean, there are not symptoms, no pain, no signs at all that I should have cancer with the exception of the PET scan. So we are luckily that we caught it when we did.

The good news is that in looking over all the scans, the doctor does not think that there is any bone erosion in my neck at this time. This is good because that one spot in particular is quite concerning to them. Since there is no erosion, that means that there will probably not need to be any surgery.

He then went over all the test results again, and said he would be referring with others in Madison who specialized in spine issues. But he thought that I would next be getting an x-ray then a CT and then probably radiation with my Plan B pill. He also thought I might need to get a biopsy to confirm the cancer. There were some changes to this just a few minutes ago, but overall we had a basic plan to move forward.

He also did not seem all that excited about rushing into things really fast. It was going to be a very deliberate process to make sure we were doing the right thing at the right time. That was reassuring as well.

We then went over to see the oncology nurses and do some tests there. Because this is in the bones I need to take some supplements to strengthen my bones. Right now it is calcium and D3, but I will also be getting a weekly shot to help with it as well. So they went over all my current meds and then had an EKG and a blood test. The EKG is because the Plan B pill can affect the heart, so I needed to have a baseline in place.

A little bit about my Plan B pill. It is called Xalkori and has only been on the market for a year or so. It was in trial stages when I was first diagnosed two years ago, and had a very high success rate even in trials. Now it is on the market and helping a lot of people. From what I understand it works at the molecular level and goes in and attacks the cancer directly. It is a very specified drug for a specific cancer. There is one person in Beloit currently taking it and having a lot of success.

I was told that the pill and the radiation would take place at the same time. For radiation I will probably have 25 sessions, that means five sessions a week for five weeks. The sessions do not last long, I just have to be there every day. The possibly side effects are like last time, possibly be tired out a little bit more, maybe a sore throat, and possible esophogus issues.

After the tests I ran into a person from church on Sunday, she grabbed me and gave me a huge hug, letting me know that she was there for us. This kind of support is a true blessing.

Then we came home and waited to hear more. This afternoon I got a call from the nurse with the radiation oncologist and new plan was put into place.

On Thursday, April 5 (Maundy Thursday) at 7:00 am I will be having an MRI.

Crap. I really thought I was going to get out of that tube test. It wasn't mentioned this morning at all, but here it is.  So I will be getting some wonderful meds and going into the tube that morning.

Then, after the tube I get to have a biopsy.

When I think biopsy I think big needle.

So right after the MRI they will be taking me upstairs and will be taking a biopsy on my hip area to confirm that this is cancer.

I will get the results of these tests a few days later, then if everything is what we expect, I will start radiation a day or two later.

The Plan B pill will be started sometime this week, probably. That all depends on the test results, being able to get the pill (which is a bit of a chore) and the confirmation from my oncologist to start taking it.

So within two weeks or so I will be on a full treatment schedule once again.

I never would have thought this was the case just four days ago.

As you might imagine, I have been going through a whirlwind of emotions during this time. I am grateful for the doctors and nurses who are so helpful and proactive. I am thankful for my wife who is walking this journey every step with me. I am thankful for my girls who help me to laugh when I need to. I am thankful for my friends and church members who are being supportive, praying for me, crying with me, and giving all of us the support that we need. And I am thankful for the God who is walking this walk with me as well.

Tomorrow I will be giving another update. It will probably include more reflections as well.

Thanks again for all your support and prayers.

My Cancer Is Back

Yup, my cancer is back.

After nearly two years, it is back.

Shit.

Okay, here is what happened. Back on December 26th I had a CT scan, you may remember reading about this. The scan came back clean, and everything was looking really good going into the home stretch to the 2 year mark. Then on January 1, I had some vision distortion in my left eye. So being the good boy I am, I went to the doctor to see what was going on. After an initial eval, it appeared to be central serous retinopathy. It is fairly common in men under 50, so that was fine.

Then came that wonderful line, but because your history...

Yup, more tests. So I met with an expert and he ran three tests on me, one that saw a bump in the back of my eye, then a florescence test, then a ultrasound of the eye (that was quite a strange experience, I have to admit, having the goop and ultrasound probe on my eyeball.) After all the tests he said, it looks like an atypical case of central serous, so I want you back in two months to redo the tests.

Then we ran into insurance issues. That doctor wasn't in our network (a painful bill there), so I went to another doctor in our network, at UW. He ran all of the same tests, came back and said, it could be central serous but (wait for it) ... because of your history, I want an MRI and you to be seen by your oncologist. It could mean that the cancer metastasized into your brain.

Crap, another tube test. I hate those things.

Luckily I could do the open MRI, so I scheduled it in Madison, did the test, and waited for results. And waited, and waited, and finally I called. They had not received them yet, so they went searching, and on a Friday night at six the doc called me back and said that the tests were inconclusive.

Great. That means more tests.

He said there were two spots on my brain, one 6mm the other 2mm. But he wasn't sure if they were cancer. So he had me go see my oncologist, which I luckily got in on Monday at 1.

This doctor saw me, looked at the tests and the pictures, and said, could be cancer, but not likely so let's do a PET scan.

Another test, another tube. But he seemed hopeful, so ...

Two days later I met with my radiation oncologist (I have lost count of how many doctors I actually have now!). He looked at the pictures and had some other smart docs look at them as well, and came up with the same conclusion. It is something, but probably not cancer.

I was breathing a sigh of relief. I was all set to go into this PET scan and get a clean bill of health, then I would do an MRI in about 2 months, and all would be right in the world.

Well, that didn't happen.

I did the PET scan and thought it went well. Jen and I went to the oncologists office to hear what we thought would be good news and boom!

Damn I hate that word cancer.

Then tie it in with metastasized. That really sucks.

So the doctor read the report and showed us the pictures. There are at least 6 spots and they are on the bone. One is at the base of the skull where the neck and spine meet (this is the one they are most worried about right now because problems here could lead to paralysis). There is another one on the spine lower down, another on a rib, another on the femur, another in the pelvic area, and another somewhere else that I forgot about.

Now here's the thing, once again they should not have found this cancer. I just had a clean CT, I have no pain anywhere (which amazes the docs because I probably should have a fair amount of pain), and the only reason we ran this PET scan was because of an eye issue not related to cancer.

Okay God, I get it. You can get docs to do stuff.

So the cancer is found, and there is a treatment, another blessing.

First it looks like I will be doing radiation again, especially in that skull/spine area. I will learn more about that on Monday when I meet with the radiation oncologist again.

And then there is my Plan B pill. If you remember from 2 years ago, there was a pill in the trial stages that was designed specifically for this type of cancer. That pill is now on the market and doing quite well, the success rate is very high. There is one other patient in Beloit who takes it and has had all of his tumors wiped out. So I will be taking this, for the rest of my life, as long as it keeps working. I will be doing an EKG and another MRI, then starting on this pill.

So that is where we are for now. More cancer, more pills, more radiation, and in need of more prayers. Last time I got through all of this with your support and prayers, and so I am asking for them again. I will put updates on here as often as I can, and as I learn more about the treatments I will be doing. If you have any questions, please post them and I will get to them as soon as I can.

God Bless,
Erik

Lent Drama - Trees of the Field

Every year during Lent we perform dramas at our midweek services. For the past two years Jennifer has written these dramas. So for today's blog I have uploaded our radio show from this morning when we performed the latest drama.

This year the dramas have revolved around different trees in the Bible, and this week it is the Trees of the Field and Isaiah. Please copy and paste the link below into your browser to hear the drama. Enjoy!


http://emedialink.com/video/15379/The-Trees-of-the-Field-–-March-9-2012-Radio-Show

The Vomiting Fish

Last fall, Jennifer and I started an on-line radio show. Every week we take another step through the Bible, telling the stories and how they relate to our daily lives.

Last week our intern, Jeremy, did the show with me. And with the two guys talking about Jonah, well, we had a little bit of fun. So for today I am linking that radio show for your enjoyment. You can find the rest of our shows at the church website: oursaviorsbeloit.org.

Please copy and paste the link below into your browser to hear the drama. Enjoy!

http://emedialink.com/video/15341/Guest-Host-Intern-Jeremy-and-Jonah–-March-2-2012-Radio-Show

Imagination

Our girls have amazing imaginations. I remember when Sierra was younger and the stories she would make up, the games she would play, and the wonderful worlds that she would live in.

And now Scarlett is the same. She turns the living room into a bedroom for her puppy (named pup-pup this week), she hides the marbles for one of her toys under blankets and tells us they are sleeping, she plays restaurant and she is the waitress named Willy, and she tells her mom where to hide when playing hide and seek.

It is a joy to watch these two and see where their imaginations take them, the worlds they create, and the joy that they have in living out in their fantasy worlds.

And there are times I am jealous, because I would like to live in their imaginative worlds as well. Growing up and losing some of that imaginative world is a real loss. So when I make the time and enter into their worlds, into their imaginations, it brings back some of that joy of being a kid and not having all of the worries and the struggles that we adults face on a daily basis.

It has also reminded me that I need to let myself be imaginative, be creative, be willing to let the Spirit invade me and be open that what might happen. Taking time to dream gives life to my soul and joy to my heart, so I have started to let myself do more and more of that on a regular basis.

What are some of things you miss from childhood and how can you recapture some of those moments?

Earlier Riser

Scarlett, our youngest, has now gotten into the habit of waking up well before 6am and deciding that she is no longer tired and that it is time to get dad up. The mornings have become fairly predictable.

5:30 Scarlett is at her doorway yelling for dad (not mom, but dad)
5:35 Dad gets Scarlett back in bed, telling her it is too early to get up
5:45 Scarlett is at the door again, I not tired, she says
5:46 Dad is in bed with Scarlett trying to get her back to sleep
5:47 Scarlett starts poking dad, and the next 15 minutes are trying to get her to stop
6:05 Dad gives up, takes Scarlett to the bathroom and down to watch TV, trying to keep her quiet so the rest of the house can sleep

I finally got to the stage where I have stopped fighting her on this. I still try to get her to stay in bed until at least 6, but when she comes down stairs I decided to turn this into daddy/Scarlett time. So we cuddle in the chair, watch some cartoons and joke around with each other.

Once I made that change, from fighting it to embracing it, my morning got a lot less stressful and I started to enjoy my time with her in the mornings so much more.

Now don't get me wrong, I would still love for her to sleep an extra hour or so every morning, but as long as she is up, I am going to make the best of it.

So what are some areas in your life where you learned to embrace the issue rather than fight against it?