Treatment Holiday

I went to get my port flushed yesterday and to get my monthly bone strengthener injection. For those that don't know, I have a port-catheter in my chest. It is like a little button that is piped directly into a main line for circulation. Whenever I have an IV, they poke a needle into it and the IV is administered through there. It keeps them from having to find a vein in my arm for an IV each time I get an infusion or have blood drawn. It was handy with all of the infusions, but I am not sure how long I will keep it in if I don't need to have infusions nearly as much. The bone strengthener used to be a monthly IV, but now it is just an injection. The port needs to be flushed monthly with Heparin to keep it from clogging and trying to clot. Gross, huh? The bone strengthener has been working really well since early on to keep the progress of the cancer in the bone at bay. I started with Zometa, switched to Pamidronate, and now get Denosumab as an injection. My moods have been up and down a little over the last few weeks and my mom had some insight into why it might be. She worked as an RN for years and said that sometimes even while you are having chemo or other tough treatments, it still feels like you are battling it with something. Once you are on a treatment holiday, one your body needs after chemo, it can feel like the cancer is free to run its course because you are enjoying the benefits of the chemo, but not currently on any medication to treat the cancer. I think that is true in my case. I am fighting it other ways also, but the conventional treatments have had the most recognizable effects. I will have a CT in 4 weeks, along with another PSA, so that will truly tell the tale. All for now. My best to all!

Brian.

Fish 0 - Dad & Brian 27

It turns out that my scouting expedition on Tuesday paid dividends on Thursday. We started out a little slow, but then got into a hole where we caught keeper after keeper as quick as we could put them in the livewell. Mark Twain Lake is known for Crappie and it is spawn season, so we hit it at the right time. Even better than the fishing was the company and we had a great time on a beautiful day. It was a day well spent. Pictures are trapped on my phone. When I figure out how to negotiate their release, I will post them. I hope all of you are enjoying your spring, as well! My best to you!

B.

Fish 1 - Brian 0

I was finally able to get out and go fishing today. While I did catch a couple little ones, the fish emerged victorious today. It was invigorating to get out on the water and in the sunshine. Beautiful day, boat ran well, didn't sink, etc. It didn't really matter to me about the size of the catch today. It is just a mood adjuster to get outside and do something that I really enjoy. I will be heading out again on Thursday with a much more focused approach to my "catching" so hopefully some pictures will be accompanying the glowing fishing report! All for now. All my best to all.

B.

Lost

Sometimes I wonder if this is all real. Is the cancer real and is my life really threatened by it? I know these things are true, but sometimes, a lot of the time, it seems like a really bad dream. I am one of those restless people that are continually striving towards something. It was the reason that my family relocated more times than I care to remember, even though I would not give up any of them due to the friends that I made at each and every one of them, many that follow these writings. Lately I am caught in the middle of living and dying. I have written brave words about living, and I walk that walk most of the time, but sometimes, like now, I feel lost in my own life. Not sure if I have many years, a few years, or maybe just one or two before the buzzer sounds and it's over. I know that no one is guaranteed anything and any minute could be anyone's last. But there is an invincibility of youth and good health one moment and the next filled with phrases like, "There is no cure" and "We don't know how long you have" and " You have young children? I'm so sorry". I thought the hard part was hearing the news and the initial shock of it all before you get you wits about you again. The hard part is trying to go to sleep, after you have exhausted most of the treatment options, with images of your wife and children crying over a casket with you in it. Then the worries of have I done enough for them. To give them the strength they will need. Peace. Character. Have I been enough of a Dad to make up for not being able to see it through? Will there be enough for them to lean on when they need it most, and I am not there? Have I supported my wife enough that she will be able to get through without her companion? These are the things that occupy my mind right now. I want to have peace with them and move back to living life the way I was intended, but I am truly stuck. Sometimes the fear and anguish of these thoughts keep me from doing the very things that I fear I won't be able to do. How twisted is that? I hate writing these things sometimes and hesitated posting this, but I need to get this stuff out and I know that others that read this blog have similar trials and need to know that they are not alone, and I will not let pride interfere with that. My advice to me is to get out ASAP and do something for someone to take my mind off of me. Works everytime. Sorry for the downer. Peaks and Valleys. Peaks and Valleys.

No chemo today

I went in for labs, to see my doctor, and to get my 6th and final chemo today. I told the Doctor that I had some minor tingling (neuropathy) in my right foot and some fatigue. It wasn't anything that I thought to be a big deal, but thought he should know. He decided based on the the last CT Scan that showed stable, but not a decrease, that another treatment might not prove to be beneficial right now, but could impact quality of life issues, so he called it off. If the cancer stays stable for a long period of time (6-8 months) he might re-introduce it. He feels that we have gotten the benefit we hoped for and now it is time to enjoy a treatment holiday. I will go back in 8 weeks for Labs and a CT Scan. If things have progressed at that point, we will look at a different chemo or more likely, Abiraterone. So I am on a wait and see right now. Hopefully the chemo will continue to stabilize things and we can have a somewhat uneventful summer this year. FISHING AWAITS!!!!

All my best!

Brian.

What to do when life is normal...

This is an interesting development. We are in our new home. The Extreme Makeover is almost complete, just down to a few items and then tinkering. My 6th and final (for now) chemo cycle is on Friday. I have been feeling good, with just a little fatigue, but nothing that is changing my lifestyle much. I will be losing my Health Insurance at the end of the month, which seemed traumatic at first, but hopefully is worked out now. So how do you restart the normal? It seems like it has been a journey to this clinic or that, this treatment or that, and living in different places with different family members forever. Really it has only been a year and a half. And while I appreciate, really appreciate, all the family and friends that have stepped up and opened their homes, wallets, and hearts, it is so good to finally be home. I see it in my kids and my wife and I feel it in myself. I have learned so much since this began and I feel like it has prepared me for when the craziness settles down and we try to make a normal life again. As I thought about that today, it scares me a little that I don't know what to do. Good thing I have a wife and 2 kids that I can devote my time to. I love that we can focus on our family and our kids and let cancer move to the back of the bus for awhile. That doesn't mean that I can change my routine or forget about it, but it is nice to put the focus on family instead of disease again. I hope and pray that we continue to get news that keeps me at least at "stable". And I pray for those that don't get to hear that news. I feel peace today. That's good. I pray for peace for you today, too.

Latest CT Scan

The PSA should come back tomorrow, but my bet is that it is in the range of where we were 6 weeks ago. The CT came back as "No significant changes to Feb 18th Scan". These are welcome words because they indicate that the chemo is keeping the lid on the cancer. It did not seem to decrease this time, but soft tissue and bones are stable as of today. I was a little surprised because I have had quite a bit more abdominal pain lately. I attribute it to the labor that we have had to do in remodeling our new home in St. Louis. The only concern is that it is not muscle aches in arms and my back, it is deeper abdominal and bladder pain that had been associated with a progressive disease a few months back. So the scan helped put my mind and my wife's mind at ease, a little, for now. Someone I know said his doctor appointments, while good lately, are like getting little 3 month slices each time the doctor says "No significant change". It is good news, but tempered with the thought of what lies over the next hill. That is why today was a little confusing for me. Undoubtedly good news, but not the exuberance of previous good news. No one knows when their time is up, and for some it happens suddenly. I feel fortunate that I have time, whatever the outcome, to try to understand this, put some things in place, and hopefully share some meaningful experiences to those that may have the misfortune to follow after me. Today, even with the good news, I am trying to accept that I have a reprieve for at least a few weeks before things progress. That is something we all fight for is a chance for a new treatment, maybe a cure, or maybe just a long enough delay to live a near normal length life. But the cancer robs the ability to live a normal life. It is many doctors appointments, side effects, pills, hair loss, injections, infusions, indignities, walking a line with everyone to maintain a regret-free existence, short term plans, etc. Those that know me will know that I am not complaining. This is my place to ponder and come to terms and decisions on where my life is and where it is going. Anyone who reads this is welcome to ride the roller coaster with me. It is meant for those going through the same thing to see this through a different set of eyes. To help, it must be honest. I am hoping that I am getting a little closer to living a "new" normal life. It has to be a balance of accepting this disease and the prognosis, and then also forgetting about it and living life the way I was meant to live it. That is like how a job goes. Put all that you can into it while you are there, but put it away when you get home. Save the best for those that mean the most. These changes are hard to figure out somethimes. Getting cancer was the easy part, living with cancer is hard...