The Journey Continues

Scarlett and I just got back from a quick trip down to the "Valley of the Kings Sanctuary and Retreat" for exotic and rare animals. For Christmas our family got a 6-month membership there so that we could support their work as well as have a place where the girls, especially Scarlett, could be around some of the big animals that she loves.

It is about an hour drive down to the sanctuary, and on this cold day we were only there for about 30 minutes, so that gave me nearly two hours in the car. Two hours while Scarlett played on her iPod and I got to think.

To think about the last 48 hours and how this damn cancer journey never really ends.

On Wednesday I was back in to the UW Cancer center for my quarterly scan, and by now these have become routine. I was have CTs done every 3 months and MRIs every 6 months because everything seemed to be going so smoothly, and I assumed that this would be the same as it had over the past two years.

The scans went as smoothly as they had before. I took my happy pills and the MRI wasn't as horrible as it could have been (yeah lorazepam!), and friend stopped by and chatted with my before the CT and that was a great way to pass the time, and then Jennifer and I went in and got the results. The CT looked stable, but the doctor did say that he needed a specialist to look at the MRI and he would call me if anything looked out of the ordinary otherwise he would see me in four months.

The meeting ended on a very positive note - we wee going to push things out four months instead of three.

Then, the next evening, he called.

The radiologist had looked over the MRI and it turns out that one of the spots on my brain that we had zapped a couple of years ago was starting to grow and there were a "few" more spots appearing.

It meant that the cancer was active in my brain again. It was still stable in my bones and the rest of my body, but active in my brain. And the targeted radiosurgery was not an option this time because there were too many spots. So the options I have were limited.

The biggest issue with all of this is that there are very few drugs that cross the blood-brain barrier when it comes to treating cancer. The drug that I am on, while it is great for treat the cancer I have in the bones and the body below the neck, doesn't cross that barrier. There are two FDA approved drugs that work with my cancer, one of which somewhat crosses that barrier,  one that does not. There are two immunotherapies for this type of cancer, and I am not sure how they relate to the blood-brain barrier. And there is one drug currently in trial that has had great success in crossing the blood-brain barrier.

So I am entering another trial. In talking with the doctor, this drug holds the best chance dealing with the spots in my brain medially at this time.

The other option is whole-brain radiation. This is where we would do radiation to the entire brain to try and wipe out all of the cancer cells in the brain. There is some success with this but the side effects include memory issues. This may need to happen down the road, but it will be a last resort.

So on Friday I was going in for my quarterly eye-ball shot (yes, I get a shot in my eye every 12 weeks because of there is a spot behind my left eye that is probably cancerous). They arranged for me to do some pre-trial testing since I was going in already, to get the ball rolling so I could get enrolled in the trail. It is also at this time that I learned I would be the fifth person in the trial at UW.

The other pre-trial test I get to do is a lumbar puncture. I am trying to think of this in the best possible light, by saying that I get to do a new test I have never done before, but I will admit that this is one that I am not looking forward to. I will do that one next Thursday.

So that is all the technical stuff, now the mental stuff.

I had gotten to the stage, in my head, that the tests were routine. I would go in, take the tests, have good results, then go on for another three months. For the past year especially I was taking the good results for granted.

This phone call was a harsh reminder, don't take anything for granted.

For me, there has a been a lot of darkness in the last 48 hours. A lot of sorry and anger and crying out and even despair.

But I also know that I won't stay in that place forever. It's only been 48 hours. That's why I wanted to make that drive with Scarlett today. I wanted to get out of here, to go do something she was excited about, because I wanted to see life through her eyes again. To hear her giggles of joy when a tiger chuffed at her, to watch he squirm when a lion roared at here. To see her eyes light up when she saw a ti-liger (one of 4 in the world) and be wowed with all of the animals in that place.

I needed to be around life today.

And that is the key, as this journey continues, to do the technical stuff, but to be surrounded by life. It is too easy to be taken in with "what could be" - I know, I have been. But to celebrate the moment, to give thanks for those who are walking with you and praying for you, to strive to live out the dreams you have while you can - to live, that is what we are all called to do on this journey.

I will probably be putting up some more blogs in the future, not only related to what is happening with my cancer journey but other faith related issues. I thank you again for your prayers and for your companionship on this journey. You are a blessing to me.

Living with Cancer

The Friday before Christmas, Jennifer and I were at my oncologist's office getting the results of my most recent PET and MRI scans. I was most anxious about my MRI because I had recently had another round of radiosurgery and I was wondering how it worked out.

Turns out the spots on my brain were stable, so that was good.

The bad news came with the PET scan. A spot had lit up on my C2 vertebra. This meant that the drug I have been on for over 2 and a half years was starting to fail. It also meant we needed to start looking at new options.

So my doc met with the radiation oncologist that I have worked with before. This doctor did not want to do radiation because the machines here in Beloit were not detailed enough to do what he wanted them to do - so I was sent to UW for a second opinion and to talk options.

But I had to wait three weeks for the appointment. Normally I am good at waiting, but this time, knowing that the drug was failing, I was anxious.

Today Jennifer and I went up and met with 5 doctors over a 2 hour period. First the radiation oncologist and his resident met with us, then the radiation oncologist met with the medical oncologist and his 2 residents.

Lots of docs in one place.

Initially the radiation oncologist was prepared to do pinpoint radiation to the spot. He knew that I had radiation done to it before, but thought it was doable to have three high-dose sessions to that spot without many side effects.

Then he went and met with the other docs, came back in, and had changed his mind.

Because of the location of this spot, the danger of too high a dose or it getting into the spinal cord are high. If that were to happen, there is a decent chance I could be paralyzed or even die because of the radiation.

So radiation was moved to a last resort.

The other docs then started talking about systemic treatments - new drugs. There are a few new drugs out to treat this type of cancer, and a number in trials - all which is really good news for me.

The doc also said that if I had come to him with this 5 years ago I probably would have died by now. Treatments for this type of cancer are growing rapidly, so I just need to be able to jump from drug to drug for as long as I can.

But...

When it comes to trials I may not be eligible. Because of my Myasthenia Gravis, I may not qualify for trials. Also, if some of the new drugs are immunotherapies, which many are going that way, they may not be options for me because of the MG.

Also, they want me to stay on this drug for as long as I can. Even though this drug is failing they want me to stay on it, because the longer I am on it, the more likelihood more drugs will be developed and more options I will have.

The average person on Xalkori (the drug I am on) has it work for about 11 months. I have been on this for over 2 and a half years. I have gotten good results with it and I am hopeful I will have good results with the next drug.

But I have to wait. And this is hard for me.

I was ready to move to the next drug right now. I was mentally prepared for next step. But now I have to wait for this drug to fail even more, and that is not an easy place for me to be.

The doctor was quite clear - he expected this drug to fail for me in the next 3 to 9 months. I will get a PET scan in three months, and if it is the same I will stay on this drug, if it is worse, there are new spots, or if I have symptoms, then we will move to another drug.

Preparing myself mentally for a drug to fail, and knowing that I am living with active cancer in my body - is a hard pill to swallow.

Back when the spots first appeared in my bones, two plus years ago, the doctor told me that there was no cure for my cancer - all we could do was prolong life.  I knew this, I know this, but I keep looking at all the new treatments that are coming and the possibilities that come with them, so I am hopeful.

But to wait to move to the next treatment so that my medication can fail more - tough mental shift to make.

So as I drove home I started to think about all of this.

- I have a great family I love to spend time with, who make me laugh, and I enjoy being with as much as possible.
- I have a great job and work with wonderful people.
- I know I have good friends and  people who care for me, love me, and pray for me all the time - I am very grateful for all of you
- I have no symptoms right now - so I need to continue to get out and enjoy all of the blessings of this great gift of life
- There are new treatment possibilities - there may not be a cure, yet, but there are treatments and eventually I will get on a new one that will work for awhile
- I know there will be dark and depressing and even painful times in the future, but those times will not dictate the rest of my life - there are too many blessings. Light truly does shatter darkness

So I will keep living in this waiting time, seeing how long the drug works but not dwelling on it. I have a great life to live, and I won't let this cancer crap get in my way.

Thank you for all your prayers and support. I hope to write more on here in the future - and not always about medical stuff :)

Auto-Immune Confirmed

So today I was officially told that I have an auto-immune disorder. This is not a big surprise. Ever since my primary doctor suspected it nearly two months ago I knew it would turn out this way.

She is that good of a doctor.

But I had to go through all of the tests and blood draws and everything else to confirm it. So that is what I have been doing.

And today's test, the one that confirmed it, well, to put it bluntly, it sucked.

I had an EMG. This is a test that measures the strength of your muscles and any change in the strength after exercise.

And to do this the shoot electric current through your body

Yup, it is an electric shock test. Not my favorite.

So you get into one of those stylish hospital gowns, then they start at your feet. They attach electrodes in a couple of places then shoot some electricity through you to see how your muscles respond.

And they work your way up the body.

Foot, calf, leg, arm, funny bone, then the face.

And they spent the most amount of time on my face.

The electric probe would shoot out five bursts, then I would have to do some facial exercises, then five more bursts. This went on for about 8 minutes.

The resident held my head in place so I wouldn't jerk too much.

So after all the tests I was talking with the doctor and she confirmed it was this auto-immune disorder. Then she said, "I knew it was that from the beginning, but I had to do the tests to confirm it."

Wonderful.

So I am starting on a new medication, hopefully it will make a difference. After four weeks I will meet with her again and re-evaluate. If the medication is not working as well as expected, then I will move to another medication. At this point she thinks that medication should take care of it.

And she did say that  hopefully in not too long I will be able to get rid of the eye patch.

That gives me hope.

So I ended my day with hope, and that is a great way to move forward.

Thank you for all the prayers and support, I will continue to keep you updated.

Thursday another test, Today dealing new realities

On Thursday I will be missing a few of my work meetings to go back to Madison for an EMG. From what I understand, this is a test to determine the strength of my muscles, especially the muscles that relate to my eyes.  It is also the test that will definitively tell me if I have Myasthenia Gravis or not.

I am really looking forward to getting those results. I want the diagnosis and I especially want to start the treatments. This has been going on a long time and I am ready for a step forward.

Having said that, I have started to notice that I truly do live in a new reality now. With all of the health issues that I have faced over the years, there have been very few, if any, physical effects on me. After cancer surgery I was doing a weddding a week later. After chemo I was back in the office within 48 hours. After radiosurgery, I was at a congregational meeting the next night.

Nothing has slowed me down.

But now, there is a new reality bearing down on me.

First I have to state, nothing big is really changing. I am still doing all my work, I am still traveling to all my meetings, I am still taking the girls to all of their swimming and tennis lessons. I am even in Chicago right now for three days of meetings.

But I am noticing that my eyes are getting tired much faster than they have in the past.

I have to take breaks from the meetings to close my eyes for a few minutes. It takes me longer to read things because my eyelids droop more. When I talk on the phone I rest my eyes so I can be ready for what is next.

It's not a huge deal, but it is a change. And it is a change I don't like.

Now I am hopeful that once I start treatments this will go away. I am hopeful that I will eventually lose the eypatch and go back to what was normal for so much of my life. I am hopeful.

But right now, this is the reality I live in.

All of us go through changes throughout our lives, including physical ones. And I think many of us struggle with these changes. Maybe it is the loss of our youth, maybe it is the fact that we just can't do what we used to be able to do and that frustrates us.

One of these changes is happening to me right now, and I am trying to find ways to embrace it rather than fight against it.

Oh, when I start treatments I will be fighting like crazy to get things back to normal, but right now, I am going to try my hardest to embrace this change and see what good might be able to come out of ir.

For example - since I need to rest my eyes more often, I am going to use this rest time as reflection time. I am going to ask myself - where have I seen God so far today?

When I am reading and start to get frustrated with my tired eyes, I will pause where I am and think back to what I just read, so that I engage with the book a little bit more.

And when I am no the phone with my eyes closed, I will push away the desire to multitask and concentrate on the person I am with.

I don't like this reality, but I have decided to use it to slow down my life a little.

And who knows, when things go back to normal with my eyes, maybe this slowed downway of doing things will continue.

So tonight, may all of you be blessed with open eyes to the blessings you have where you are.

A Shot in the Eye, Abnormal Results, and an Auto-Immune Disorder

I haven't posted much since the radiosurgery because I wasn't quite sure what to say. There have been a lot of doctor visits, more tests, and a possible diagnosis, but not anything concrete yet.

So here is where I stand:

I meet with the Radiosurgery doctor tomorrow. There is not much to talk about since I have not had another MRI yet to see how successful the surgery was. I was told that the MRI needs to wait a couple of months to see how successful the process was. So I will wait and assume that the tumor was blasted away.

The eye issue is still there. I wear a patch pretty much full-time now. The only real issue I have has to do with steps. I have a hard time judging the depth of the steps so I have become a big user of handrails.

The fluid behind my eye is decreasing, but not gone. So every time I see my eye doc in Madison I get a nice little shot in the eye to help dry the fluid out. They numb it up nice, so it really isn't all that painful. There is a possibility that if the discoloration behind the eye every grows that I may need a special type of radiation to deal with it, but the is not something we are considering now.

As for the double vision and drooping eye lid, it appears that my main doc was right, again. When I first saw her, before any of the tests, she made an educated guess that it was Myasthenia Gravis. This is an auto-immune disorder. It is not related to my cancer at all. It is a new, and rare, disease that has reared its ugly head in my life. I have had a number of blood tests that were highly abnormal and are starting to confirm this diagnosis. Next week I will have an EMG to test the muscles and confirm it.

There is no cure for Myasthenia Gravis, but there are treatments. The treatments vary from surgery to blood filtering to medications. With the treatments there is hope that the muscles in my eyes will work normal again and I can hold of the symptoms for a long time.

Once again, I realize just how special I am.

Most of the time I am pretty upbeat about everything. I enjoy what I am, doing and the activities the girls have us running to. I am busy and, I think, doing some good work.

But there are days that I am tired of all the doctor visits, the tests, and the waiting. To go a month without a doctors appointment is a dream.

And now we are in Lent, one of the seasons of the church year I appreciate the most. And it is this seasonal trek that keeps me grounded as I deal with all of the health stuff.

I will post more as I know more. As for now, my you always be blessed by having your eyes opened to gifts you have in your lives.

Spending the day with screws in my head

Yesterday was Radiosurgery day, and it was definitely a new experience. Overall the day went very smoothly, and I have very little pain today.

The day started around 9:30 when I got checked into my hospital room. After getting an IV running, I was brought to the basement of the hospital to have a frame installed onto my head. I was not sure what to expect with all of this, but it was simple and rather painless process.

They loaded me up with Valium and other fun things. Then, after explaining the procedure to me, the doctor came in, put some numbing agent on four spots on my head, and literally screwed this metal frame to my head. A couple times they had to stop and add more numbing agent, but it only took about 10 minutes. Below are a few pictures of how it turned out.

After the frame was put on I was then hauled in to have CT done of my head. The hardest part of this process was lying down and getting up again. The frame, while not that heavy, changed my balance and I needed support getting up and down.

I have to say that there was a nurse and an intern with me at this time who were amazing. The nurse had been doing this for quite awhile and was great at her job. The intern wanted to see how it was all done, and she demonstrated a great bedside manner. I appreciated them both a lot.

After the CT, I was brought upstairs and allowed to eat. Jennifer and her parents had come to spend the day with me, so we sat in my little room, talking and passing the time. I was given a few pain meds for a headache that appeared, but overall there was very little pain.

But eating lunch was a little funny.

First I had to find out how to order lunch. That involved calling the cafeteria and placing an order.

Putting a phone to my ear. With a frame on. That didn't really happen to well. Luckily my father-in-law was in the room so I just pointed at what I wanted and he called  it in.

The nurse also warned me not to get an apple. That made a lot of sense since there was no way I could get the apple to my mouth.

For the next three hours I just sat in the room, talking, Facebook posting, and listening to those around me. A little after 3:00 I was brought down to the radiation machine, again in the basement of the hospital.

I thought the next part would take over an hour. Turns out it only took about 15 minutes.

They loaded me into the machine, bolted me to the table, and then I have 5 arcs of radiation shot into my brain. each arc only took about 2 minutes. Between arcs they came in and readjusted me so they could come at a different angle.

Then I was done. The got me off of the table, brought me back to the first room and the nurses unscrewed the frame. Then Jennifer and her parents came in, and off we went.

I had enough Valium that I was feeling pretty good at the time, but a little later I started to get a bit of a headache. We were home by 5:30, the girls came home a little after 7:00 from Kid's Club. We put them to bed and not much later I was in bed too.

This morning I am feeling fine. I had a little headache and little tenderness on my head, but that is mostly gone now. I go back in a few weeks to see what is going on, but there isn't anything pressing right now.

Overall I feel good about the procedure. They knew what there were doing and there was very little doubt that they could destroy this tumor. And I look forward to the confirmation that it has been blown up.

We are still dealing with the eye issue. I see an eye doctor on Monday, and hopefully something will come from that that.

Thank you for all you prayers. More to come later.

Erik

Targeted Radiation - Zapping the Brain

Yesterday Jennifer and I went to Madison to meet with the Neurological Oncologist.

I was reminded how great UW is when it comes to treatment. The resident, specialist and nurses all took their time, answered every question we had, and made us feel comfortable in what is a stressful time.

The resident spent the most amount of time with us. He went through the scans with us and talked about the variety of treatments that have developed over the years when it comes to cancer in the brain. Radiation has radically changed over the years and has a very high success rate.

He did confirm that the cancer has moved to my brain and there is a 1.2mm spot. He talked about it being fairly big, but when the specialist said it wasn't that big when he came in. The pill I am on works very will with the cancer in most of the body, the problem is the central nervous system. There the pill is not as effective and the cancer traveled to my brain and set up shop.

They used to do only all brain radiation, but now that is not the norm when there is only one spot. Now they do Radiosurgery when is a very targeted type of radiation with a very heavy dose.

During this time they went over my eye issues as well and they are stumped. There is no reason for the eyes to have double vision, so I will be meeting with another doctor to get prisms in my glasses as they try to figure the eye stuff out.

So, the process I will be going through it not as intense as when I had surgery to remove part of my lung, but not as simple as the other radiation I have done.

Next Saturday I will be having another MRI. The one in Beloit was not as detailed as the doctor likes, so I need one with 1mm slices of the brain.

Then, tentatively scheduled for Wednesday, Feb. 5, I will go through the radiosurgery process. In the morning we will go to Madison and I will have a frame attached to my head. It will be screwed on, but supposedly all I will feel is a little pressure. I will then spend time in a hospital room with the frame on like a crown as they prep for the procedure.

Then they will be doing a CT scan which they will combine with the MRI and find the exact point to radiate. After they are set I will spend an hour or so bolted to a radiation table where they will be zapping this tumor from a variety of angles. During this time I will be some meds to keep me calm.

After the radiation I will have the frame removed, then I can go home. It is a one day procedure. The next day I may have a dull headache but that is about it.I will also have follow-up MRIs and PET scans to make sure that they got it.

A lot has happened very fast. I have been reminded, again, that there is a blessing here. The cancer is in a place where the symptoms should be motor function problems, and I don't have any of those. They found the spot because of something totally unrelated, like when they first found the cancer. The Spirit is blowing, and I am blessed that they found it.

There is something they can do, and that is a blessing as well. As the specialist told us, if this happened 10 years ago, I wouldn't be here. The treatments have come so far in a short time. And I know that there will be more breakthroughs as we move forward.

I do have to admit that there are times I am very frustrated, angry, and depressed that the cancer has come back. Once again, I thought we had this licked, at least for awhile longer, and I never expected it to go to the brain. But even more frustrating is the double vision and no answer for it.

But even in all of those down times I know I am blessed because there is something that can be done. So go about my daily life, celebrating what I have, doing the work I love, and preparing for the next steps that I need to take.

Prayers are always welcome, I will post more as things develop.