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?

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.

Getting Hammered, Literally!

Yesterday I had my second bone biopsy, since the first one didn't really produce any concrete answers. This time I had it done at UW in Madison. So after dropping the girls off at school Jen and I headed up for the procedure.

UW has a great facility and the people are wonderful. We arrived a little early and they got us signed in and ready to go in no time. Then a nurse brought us back to a prep room where I got into on of those wonderful gowns and hospital pants, she took my vitals, and drew blood to see how well my blood clots. Then the doctor came in and explained what we were going to do, similar to the last time with a few minor changes. This time they were taking the biopsy from the sacrum and they assumed that the bone would be hard, so I should be prepared to hear the sound of a mallet pounding on the needle to get the bone out.

Hearing a mallet pounding on a needle to get bone out of me, really!

So Jen and I waited until it was time to head in, then I got wheeled around the corner while she went to do work in the cafeteria. We went to the CT room and got all settled then they explained the procedure again.

Then came the happy drugs.

Now these drugs were similar to what I had last time, they relax the body and you you get tired, but never I was never knocked out entirely. They did an initial mark, ran me through the CT to make sure it was the right place, then went to work.

What I remember is the poke of the needle then some pressure as they got to the right spot on the bone.

Then the doctor said, "Now you will hear some hammering sounds."

I am very glad I was medicated at that point.

So the hammering began. I felt pressure in the area and with each pound of the mallet I was moved a little bit. Every once in a while they would stop, take a picture, then start again.

At one point I asked about the pictures, and they pointed to a monitor above my head that showed the pictures, so every time they stopped I would look at the pics and see what they were doing. It was pretty cool.

I have also requested a copy of the CT pictures and will post them once I get copies. On them you can see the area where they took the bone very clearly.

The procedure took an hour and fifteen minutes. They were very pleased with the sample that they got and are hopeful it will provide some answers. While we were in the CT room I also requested to take a picture of the needle and mallet that were used. The doctor said she would bring in clean ones to my recovery room afterwards so I could take the pictures. Below is the needle set that was used, she could not find the mallet.

When  she brought it in Jen asked if this was a common request, the doctor said no, it was a first.

Gotta love be unique.

Our friend, Dave Glesne, was in town so he stopped by during recovery as well. I was a bit loopy at the time, but it was great to have someone else come in and offer a prayer for us.

After two hours, and an omelet lunch, I was freed. My side was a bit sore, but overall very little pain.  We came home, and as the drugs wore off I got quite a headache, but that wore off in a few hours.

They said that it will be Tuesday or Wednesday before I get results, so it is more waiting, but hopefully we will get some solid answers this time.

So hopefully that is the end of the bone biopsies, and now we move forward with the next steps.

Have a blessed Saturday.

Eye Distortion Continues

So today I had an appointment with my eye doctor in Madison. It was my two month check up to see if the distortion in left eye had gotten any better and what our next step will be. I went through many of the same tests as last time, without the ultrasound of the eye or the florscene test. I also met with a retina specialist, something I did not do last time, as well as my regular doctor.

First of all, the distortion in my eye has not changed at all, it is neither better nor worse. This is both good news and bad news.

Bad news - my eye distortion is not caused by central serous retinopathy. That would have been the easiest, and best case scenario and it would have taken care of itself eventually.

Bad news - The bump in the back of my eye that is causing this is probably metastasized cancer. With my history and the discolorization and shape of the bump, both the doctor and retina specialist think this is the case. I asked if I didn't have a history of cancer what they would think this is they said a Nevus, which is basically a mole in the back of the eye, but those are normally brown and this is yellow. So they are thinking cancer.

Good news - the spot has not changed in size at all in the last two months. This is good news because if it is cancer it is very slow growing.

Good news - If this is cancer then the new meds I may start taking soon should work on this spot as well. So after a while my sight should improve.

They also said that doing a biopsy of the eye is not the direction they want to go right now. If they do a biopsy then there is a very good chance that I will lose the sight in that eye. So a biopsy is a last option.

There is an option to get a shot in the eye to help get rid of the distortion, but I would have to get shots every two months to maintain the lack of distortion. Since the distortion right now isn't that bad and mainly just an annoyance, we are passing on that option for now as well.

So for now, all I can do is wait, again. I have another appointment in July to see if there is any change. Yup, more wait and see. What a pain.

On Friday I go in for another bone biopsy, this one of the sacrum. After I get the results then we will decide what the next steps are. If it comes back positive for cancer cells, then I will start taking my new med and radiation therapy, if not, then who knows what the next step is. I am sure it will involve more tests of some kind. I think they like sticking me with needles of all sizes.

Days like this are depressing. I was hoping for something definitive, maybe even something positive like something not life-threatening. But instead I got a "probably cancer but not positive" diagnosis.

And then this afternoon we had to tell the girls about Dakota. So, not a real happy day here.

At least I got a Java Chip Frappachino to wash the day down. I've gotta find the little joys somewhere.

Now it is time to give Scarlett a bath, another little joy for the day.

Good Bye Dakota

Yesterday I said goodbye to Dakota, my dog of 15 years.

I got Dakota the last few weeks I was in seminary. She was a bright dog, easy to train, who loved to hunt and chase after pheasants when we lived in eastern Montana. She was with me through three moves, getting married, having kids (which she loved as you can see in the picture), my cancer battle, and so much more.

And she loved people. I would warn anyone entering the backyard, we have a dog and she may lick you to death.

Over the past year she started going downhill. She lost her hearing, was losing her sight, her memory was drifting and she had a hard time walking and climbing steps. She also stopped eating regularly, and lost 30 pounds in the last 6 months.

We knew it was time, but that never makes it any easier.

So yesterday Jen and I took her on her final journey. We both sat with her, I had my hand on her neck, and told her that she was loved.

It was a hard afternoon.

Then, on the way home, Jen had the other van and she surprised me by picking up a red bud tree that we are going to plant where her kennel is.

We will be telling the girls after school today, they were with a friend yesterday so we decided to wait.

So yesterday was a day to say goodbye. I will miss Dakota, my dog, my friend.

Have you said goodbye to pets?