One year ago today was.....

 

A day full of surprises including my trip to the ER where they told me to follow up with my primary as they saw something on my scan.

 

Fast forward to today. Received a call this morning from Dr. Del Chairo (DC) who said he talked with Dr. Ed and they feel we should try the steroids and come back in a month for a scan. Ahh… What? Yesterday was different and it was really, there’s nothing to lose by putting you on the steroid and lets schedule surgery and now we’re waiting a month.  So, here is the bottom line, DC does not want to make the call so We’ll make it. He is on his way out of town for a week and I’ll connect with him when he gets back to get me on the table. We cant handle the roller coaster and if it turns out I make the wrong decision, I’ll live with it. In 2 months, from Mid March to late May, this thing changed enough and I’m not waiting to pass that line where they cant do anything. It’s been a YEAR… DC said today that’s a good thing as it’s clearly not too aggressive but it’s been a year.

As it’s Tuesday, the Multi Disciplinary board met and discussed my Pancreas and Dr Ed called after.  He said the board agree with the steroid and he sent a script for Prednisone and I’m supposed to start 40MG a day tomorrow and also received an Antibiotic they want me taking 3 times a week. He expects I’ll feel better with the meds, it might increase my appetite and give me more energy so that’s a boost. The antibiotic is to fight off any bugs as the immune systems is a little compromised. So, we’ll start this up in the morning and see how I feel.

At some point this afternoon I went to lay down as I was having a tough time. It’s hard to pinpoint how I’m feeling and I guess I’d say it’s a combo of Acid Reflux, a stomach ache and being that guy on america’s funniest home video who gets kicked in the gut by a horse. Unfortunately, it comes and goes and it wrecked me today. There are also these pings that show up and the Dr’s office asked, on a scale of 1-10, whats the pain level.  Well, Doc, some times it’s pretty minimal and a 3-4 so I can hold my breath and get through it and sometimes, it feels like my ribs are splitting apart and I find myself unconsciously grunting or making a sound to deal with the pain. But don’t worry doc, then it goes back to zero…. Sounds like something we might want to investigate…. Like last summer.

As I was resting today, no book, TV, music, phone or Ipad, my thoughts were all over the place. I realized I didn’t post anything for about a week and imagine a few of you were looking for updates. Here’s where it gets tough…  What am I going to say?  Feel like shit today. Really suffering at the moment. Do you know what it’s like to feel sour for a year?? I do.  I started wondering what kind of updates I gave during chemo then realized that’s different as the treatment last months and we might get there with this. I’ve never read the older posts and cant imagine I will. There’s this strange line between medical details for family and friends vs sharing my thoughts or how I feel and, as I said above, I was all over.

I’ll mentioned that the Santa Susana stuff reminded me of a 10,000 Maniacs song called Poison in the Well and then I thought of the map they showed in the documentary littered with spots across the country where the government tested or produced chemicals without really knowing the long term ramifications. Of course, we’ll never know if it had any impact but living under 10 miles from a nuclear meltdown cant be great. I’ve watched the Simpsons.

With it being such a crappy day, I will share some of my thoughts and I’m giving you warning. If you don’t care, probably time to close your browser and I’m not offended.

Maybe the worst question to ask me right now is “how are you?”  I don’t think you’re really ready for the answer and you probably wouldn’t know what to say if I told you the truth.  While watching that documentary, it occurred to me that those babies going through treatment are probably the most authentic patients as you can see and feel whats going on with them. I’m telling you, when seeing one of those little girls resting during treatment, I felt it and I’ve been there.

So, whats it really like for me?  I think you have to break it into physical and mental:

Physical: I mentioned above how I felt today and there’s a good chance I’ll feel that way tomorrow. Maybe the steroids will help or maybe I’ll have another flare up of Pancreatitis where I can hardly breathe. While the little girls show you how they’re feeling, I don’t believe adults do as I know I try and lessen the conversation for the person I’m talking to. Do they really want to know how I’m feeling…. Probably up to an invisible point and I believe, if you have others in your life going through something, they’re not giving you the full story.  Many reasons including how personal the physical stuff is. Would you just tell anyone who asked how you were doing about all of your medical stuff? Probably not and I understand I’ve opened this door and again…. There is a line somewhere.  For those of you who know I’m not a great sleeper, when I was off over the past few weeks, I was sleeping 3-4 hours during the day… every day. Just not normal and my body was tired/worn out.

 

Mental:  Yea, so this is the biggest mind fuck as we’re stuck and a year into this roller coaster ride. Shit is changing daily and its hard to share the details as I don’t want others to have pity on me for what I’m going through. When I had that scan a few weeks ago, the tech looked at me like I was a ghost and it was upsetting. On the other side, Dr Ed was right there with us and no judgment.  Maybe you’ve had medical issues and maybe they’ve been potentially life threatening. What did you think about??  Yes, I’m doing my best to be positive and I don’t believe its uncommon or wrong to think about death and the impact on my family.  I’ve had a couple dark days not knowing how this will end and we still don’t know. It’s hard to watch family trying to understand where this is going and when you ask me how I’m doing, its hard to be honest.

Please, don’t ask. Sorry for the bluntness but it doesn’t help. Most of you are pretty smart so please come up with something else to say.

Lots to consider today and, 8 hours after I started feeling crummy, I still feel crummy.  Just as I finished writing that last sentence, I knew something was wrong and ran upstairs to throw up. Not sure what that’s about but it was the first time it’s happened during all this.

 

With all that said, until we have movement, I’ll drop a note if things are changing and just know, if I’m silent, I’m not feeling well.

Thanks again for checking in with us. Its amazing to see the support and, the reason I never reread any of my posts is I want to share how I felt at that moment…. And this is how I’m feeling today.

 

Sam