Remembering the Blessings

This week we have been on vacation in the Rocky Mountains. The past few days have been spent in a cabin outside of Estes Park, CO. It has been a great time to get away and spend some time with the family. My sister and her girls and my mom have been here as week. Watching the cousins play been a blast. One of the highlights of the trip so far was yesterday when we all went on a horseback ride. Just seeing the smile on the girls faces as they got on those animals and listening to them talk to and about the horses was an amazing blessing. And it reminded me once again, the greatest blessings in my life are cuddled up on the couch next to me. These girls and their mom being so much joy to me and seeing them smile is the best medicine for any heart. Today we are taking a gondola ride to the top of a mountain and have a picnic up ther. I will be soaking in every moment, the beauty of the mountains, and the giggles I hear coming from the girls. Have a blessed day and I hope you can hear the blessings in your life today too!

Side effects

Today we are taking off on a vacation. We will be meeting up with my mom, sister, and nieces for a late celebration of my mom's 70th birthday. It has been a long time since all four girls have gotten together and they are excited. It is is also the first day that side effects have started due to my new medication. As with all medications, there is a list a mile long of the possible side effects. Normally I avoid reading these lists because I don't want to think about what might happen. The side effect that I do have is a visual one. Yup, not only do I have the squishy vision thing in my left eye, but now when I blink the edges of both eyes are distorted. It is hard to describe, and my vision isn't any worse. As my father-in-law put it, it is like have the results to taking a psychedelic with the actual drug. The other person in Beloit who has taken this med had the same side effect, and it went away over time. Luckily it does not really affect my daily life, once again it is jut an inconvience more than anything else. I am sure I will let you know if more side effects come, until then, have a great week.

Waiting, Waiting, Waiting

So I met with my oncologist today, and the word of the day is waiting.

Yup, I get to wait for another 10 days before I can start taking my pill. He wants the radiation to get out of my system before I take it, and that takes two weeks. So on Friday, June 15th I can start taking the pill.

As I told him, I am chomping at the bit to get going with this, but he wants to make sure that everything is okay.

I understand, I really do, but come on! I am getting tired of waiting.

The rest of the visit went fine. All of my numbers are good, there are no other issues going on with me. So all of that was positive.

I did get another shot that helps to harden my bones. I get those every month now, luckily they are not painful at all.

I also set up another visit in a month and a PET scan in two months. That PET scan is the biggie, it will let me know how well the pills are working.

So that is the news today. More to come I am sure.

Radiation Over, Moving Forward

I have taken the past few weeks off from blogging basically because I was a little overwhelmed with everything and needed a break. Now I am back and will catch you all up with everything that has been going on.

I have had my 14 sessions of radiation. The last one was this morning, and I got to keep the mask (which is currently sitting on my desk and I am debating what to do with it - paint it, target practice, or bonfire - you can log in your suggestions as well :) The treatments went quite well and the side effects were minimal. The only real issue I had was a sore throat and that was expected. Hopefully it will go away in the next few days. I was not tired or worn down like many are and I was able to keep doing everything I have done at work and with my family. Overall it was not a large change, just an extra trip to the hospital every day for three weeks.

A few days ago I started having some headaches as well. They are not as bad as the cluster headaches that I get, but they are annoying. The worst part is that they make my mind wander as to what could be causing them. I think it is more likely that I am anxious to get back on my new pill and start that leg of the treatment.

As for the pill, I meet with my medical oncologist next Tuesday and I am fairly certain that I will start the pill then. I am looking forward to this stage because it is the treatment that holds the greatest hope for me at this time. I have heard many positive stories about it and so I am anxious to get going with it. It will also take 2 months before I know how it is working. They need that much time for the drug to do what it is supposed to, so it will probably be in August when I have my next PET scan.

Some of the emotional stuff that has been going on is trying to be organized for the "just in case" moments. I am one who likes to be prepared for anything, and so I have been putting together files and folders for what might be, and that is emotionally exhausting. Hopefully all of that will be done in the next few days and I can leave it behind me.

I also try to find more ways to spend with family during this time. I am looking at ways to make some lasting memories and take lots of pictures, especially funny ones with everyone smiling or sticking their tongues out. These are the moments of joy that help when the moments of struggle come.

And I am still planning things for the future, both for the church and for my life. I am looking at some trips to take, maybe coming to the Cities to see people again later this summer, and some creative ideas at the office. All of this excites me and keeps me focused as well.

So I will update again next week after I meet with the doctor, and please let me know what you think I should do with the mask!

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.

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.

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?