Thursday, May 10, 2012

A New Style - The Radiation Mask

So today I got fitted for a radiation mask. The one pictured is not mine, but similar. Mine does not extend below the neck. It is a weird sensation getting fitted for this mask. It comes as a flat sheet with holes in in that they pull over your face and mold to your head. Then it sits there as it dries. Later they took me to get a CT where they put marks all over the mask to ensure it would be lined up the same way every day. It is their way of making sure that they hit the same spot with the radiation every session.

Overall the experience was not bad at all. Even with my claustrophobia I was able to handle the mask fairly easily. During the prep time I talked with the doctor about some of the other therapies I had heard about and he even shared some hopeful news with me.

First, he was talking in terms of years. He said that he was fairly certain that they could take care of the spot on my C2 and it would not come back there (no guarantees of course).  His concern is it coming back in other places, and that is why I will be taking the pill as well.

He has done some research on the pill and seen good results as well. He also acknowledged that if the pill were to stop working then there are other drugs in trial stages that will be available down the road.

This is where he talked about years, which I silently rejoiced at hearing.

Next Monday I will start radiation. I have 15 sessions scheduled, so three weeks worth. The day after I finish my last session I meet with the oncologist and will probably start back on the pill. I also have it scheduled where I will get my radiation at 8:30 am, so I can get my treatment and go to work without any issues.

Emotionally it has been a bit of a rollercoaster the past few days, but now things are looking up once again. I really love this doctor and the hope that he brings with him. I know that I am surrounded in prayer and with the support of so many people, which I treasure.

So I have the weekend to get ready for treatment and then we are off and running.

Monday, May 7, 2012

The Treatment YoYo

So today we met with the radiation oncologist to plan out the next step of my treatment. He had been in conversation with a number of doctors to see if there would be any issues in doing radiation while I am on my new drug. And basically the answer was - we don't know. This new drug is so new that there is not anything published on its interaction with radiation.

So the safe thing to do, and what he recommended, was for me to go off of the drug until I finish my radiation therapy, and then start it again.

On the drug, off the drug, on the drug, off the drug

The yo yo goes up and down.

This makes plenty of sense to me, and I agree with it, but it is not fun stopping something I am sure will help and then starting it up again.

But that's the way it goes.

So on Thursday I will get fitted for a radiation face mask. Then next week I will start 15 sessions of radiation. That is three weeks, once a day.

After the 15 sessions, I will resume the medication and see how things are going.

So that was the excitement of the day. More reflection to come tomorrow.

Friday, May 4, 2012

Reading About Side Effects May Cause Side Effects

Okay, I haven't really had any side effects in the first 24 hours, but that side effect list is long! I know they have to list every side effect possible, but reading through it all makes it seem like your whole body can fall apart.

I stopped reading after the first half, if I have a side effect I will deal with it. Otherwise, too much knowledge can cause mental damage.

So the process has started, and I have had a day to mentally get back into the treatment mindset.

And, as I noticed in the past, the mindset is a very big thing. It is not always easy to be positive and upbeat, but I try to look for the hope that every step I take on this journey. There are times I crash to floor, but those times often don't last too long and I can get back up and see the blessings I have in my life - family, friends, great church, a God who beat the crap out of death, and the list goes on and on.

Yesterday was one of those up and down days. I met with the oncologist in the morning and we talked about the results. The most positive thing that came out of it was that I can now start this treatment, and it does have a good success rate.

But there was also a reality check. As the doctor said, this drug is not a cure. With it what we hope to do is manage or eliminate symptoms, which you don't really have, and prolong life.

So I said that the drug only has one purpose with me then, the prolong life as long as possible. I still have a lot to do here!

He also said that when it comes to cancer that has metastasized to the bone, it is not the cancer that kills you. Instead the cancer provides ways for other things to kill you. That is why they are so concerned with the spot on my C2 vertebrae.

He checked me out, saw no other signs or problems. I am still an enigma since the only symptom I have had is this eye distortion, which may or may not be linked to the cancer. So he is as pleased as he can be and hopeful about the med.

I then saw the nurse who gave me my first bone-hardening drug. I will get this once a month to help prevent any erosion in my bone, especially my spine. I will also do blood labs once a month to make sure that there are not any issues developing with my kidneys or liver.

I am due to see this doctor in a month to check on side effects and in two months I will have a PET Scan and get the results. At that point we hope to see a change in the spots.

On Monday I meet with the Radiation Oncologist and we will set up a plan for radiation therapy. I am assuming it will be 25 sessions and will focus on the neck area.

So with all the medical stuff in place, this weekend we are going to our Synod Assembly, which is held in the Wisconsin Dells this year. We are bringing the girls with us and will celebrate my birthday up there as well.

The other mental shift that I have made in the past day has to do with where I am going to choose to put my energy. We all know that our time is limited, and sometimes that knowledge is shoved in our face in a fairly uncomfortable way. My re-diagnosis reminded me of that once again. So I want to spend my time, as much as I have celebrating all of the good things and people in my life. I have books I want to read, places to see, the gospel to share, girls to chase, a wife to love, fires to sit by, and sunrises to experience. Like I said, I have a lot to do, so the med needs to work for quite a while and I need to make the most of it.

But don't we all?

So what are some of the things you want to do with your life?

Wednesday, May 2, 2012

Cancer Confirmed

So about 20 minutes ago I got the news I expected, but was hoping wouldn't come. The spots on my bones are cancer, and it is the same lung cancer from two years ago. I knew this was coming, but seeing the report and hearing the words, again, don't make it any easier.

Tomorrow morning I will meet with my oncologist and probably start taking my new pill. I am still very hopeful about this pill and the results it has had for others.

Monday morning I will meet with the radiation oncologist and probably set up a schedule for 25 sessions of radiation. He is looking into how radiation and this new pill will interact with each other before he starts anything.

So the waiting is over, and now, at least I can do something.

More to come later after I process all this.