A Profound Experience

Seeing as I’m up, I’ll jump right in.

So yeah, you know what’s great? Having a neighbor that feels the need to tinker with what I can only assume is a Harley or maybe some giant piece of industrial equipment at 8am in the morning. They really should go ahead and record it and sell it alongside crashing waves or noises from a babbling brook as Its just soothing. So soothing.  But I digress. Anywho, our heroine had quite an experience this week. For people who know me know that the chances of seeing me in church on a Sunday are about the same as having Sasquatch (or Bigfoot as he’s known to his friends) walk through your yard, eating a hot dog and whistling Mrs Robinson by Simon and Garfunkel. Slim to none. It’s not the fact that I dont believe in a higher power, I do. But church has never really taken for me. Elizabeth however was raised in a church environment. She has a much stronger (and probably little different) belief in the gospels than I. So when this whole thing began, understandably, our faith was a little, lets say, shook.  Mine a lot more than hers.  I spoke with a good friend at length about this and he gave me a different perspective on how to look at this from a religious angle. It was well needed and I’ve thought about it a lot since then. However, I still worried about Elizabeth’s state of mind and how to relieve it. Well, I’ll just let her tell it.

To post or not to post was running through my mind. Well, something said to but only a small piece.
Today my mom and sister drove me to the north side where at my dads old (before St. George’s Episcopal Church), Holy Cross is now Christian Healing Ministries. A retired Episcopal bishop Frank and Emmy Cerveny got started and brought in Francis and Judith Mac Nutt. I went in not knowing what was going to happen but kept my heart and mind open. They apparently have been here for over 20 years and from what I was told and what has been written is that God is using these wonderful men and women are praying for individuals and miracles have happened. So what did I have to lose. 1- there is a very long waiting list but was able to get in today after a call mom made to our friend to just find out information about the church. 2- it just happened to be at what was once my father’s church, Holy Cross where I have few memories because I was young. When we got there we were kindly greeted and given a little info. I went by myself and met 2 women whom I’m embarrassed I can’t remember their names at this minute. They were so kind, loving. They told me what the ministries do. I’m not going into all the details as this was personal to me. No, there was no weird hullabaloo going on. Just talking, quiet times and prayer. That’s all I’m going to say. But when I left I was calm, felt more at peace than I have since this whole thing started. Maybe I’ll get the miracle we all are praying for and if not I’m a little more at ease with myself and God. I still have things to sort out for myself but that is normal. I’m glad I went. I thank Mrs. Cerveny for helping us get in. The website for this is http://www.christianhealingmin.org.
Sorry, no tattoos, piercings, jumping out of planes or anything like that. My love to everyone who continues to pray for us. Please keep the prayers coming. 🙏💕😊

There was more but as she said, its her story to tell.  I do know that she seemed a lot more at ease last night than she’s been in a while. And believe me, I can see some of your eyes rolling from here. “I don’t think that’s how God works”. OK. I get that. I honestly would probably think the same thing sitting where you are. But let me ask you this?

The cell that went sideways and started this whole ordeal.  How’d that happen? We’ve asked doctors why and how a woman who barely drinks, never smoked nor done any drugs, and takes care of herself, can get an extraordinarily rare tumor? One answer we got from a surgeon, dumb luck. So my question back to you would be this, if we dont have an answer as to how it got this way, who’s to say a little faith in God/positive thinking can’t turn this thing around (along with modern medicine). And we aren’t even saying that God is going to magically make this disappear. That would be a true miracle and if it were to happen like that I would not only go to church every Sunday but they might as well give me a key to the joint to open it up an hour early and I’ll bring breakfast.  Maybe the miracle will come in the form of a doctor saying, hey, lets try this or some new method they figure out.  What’s the old saying, the lord works in mysterious ways? All I know is she feels better mentally and that is going to go a long way.

There were a lot of coincidences, happenings, and weird things going on for the universe yesterday to tell us that everything was going to be alright. So for today and going forward, we’re going with that. Keep riding the wave, pray for a miracle, and lets see what happens. Leap of faith type of thing. What could it hurt and it costs you nothing. Love you guys and blog at you later.

A Call to Arms

CANNONBALLLLLLLLLL!!!!!!!!!!

So, a quick update on our heroine. After the switch of the antibiotics everything felt better a far as the nausea. So that was a win. We went and got another dose of the chemo today and hit another one next week then are off until September with that. We have mapping on August 4th then install the radiation for the right lobe on the 29th (post vowapalozza.). The CT and MRI after a week shows that everything is holding the course. No real change, but its only been a week so we”ll wait and see. We’re going to hold off on the clinical trials for now. After talking with the nurse, we’re going with the best meds with the best history for right now. To equate it to a football game (which I tend to do) its like a team scripting its first ten offensive plays. We aren’t at the point yet where we need to start chucking bombs down the field. The nurse made sense that if these drugs/methods are working, then why introduce something that may interfere or cause side effects that you dont want. And I want to say we appreciate all the advice/posts/messages/texts/emails we get (we really, really do) but none of us are doctors, and few have any medical training, especially me. There’s a lot clinically they still could do and she says they have up their sleeve if needed. I’m still going to get with MD Anderson to see what’s out there but really, lets see how this plan works. We may start to even fiddle with the nausea medicine and see if she can get behind the wheel again. So that would be a win. But for now, everything is fine.

So I’m starting the day off and like usual its on ESPN radio.  I’m paying the usual amount that I do to it (not very much) and head to the temple of doom.  It’s the day  for their nonsense awards (the ESPY’s) but also the day they auction off stuff for the Jimmy V foundation for cancer research.  I’ll be the first to say I would’ve listened to maybe twenty minutes of this and moved on in the past.  I may have flipped it back out of habit but wouldn’t have paid much mind at all. But after February I listened. The first speech I heard was Stuart Scott’s before he passed.

“Fight like hell. And when you get too tired to fight, then lay down and rest and let somebody else fight for you…I can’t do this ‘Don’t Give Up’ thing all by myself. I got thousands of people on Twitter to encourage me.” (We got a lot on here, so thank you all)

“When you die it does not mean that you lose to cancer. You beat cancer by how you live, why you live, and in the manner in which you live.” (I can vouch for this, the kids that have had Elizabeth as a teacher will make this a better place because of her.).

I kept listening. They had stories of people who have battled/are battling cancer. Again, I was absolutely riveted. I listened to Dick Vitale, a man far past his prime screaming about why can’t we do something here, the passion in that guys voice resonated. There was one guy that (again, like I do) equated it to sports and said if we’re getting beat, lets do something else and adjust. These doctors need the funds to do this (don’t, please dont start with the big, expensive building thing here, that’s for another day). But then they played Craig Sager’s speech. I didn’t know much about him until he died. But really a cool spirit.

“Whatever I might’ve imagined a terminal illness would do to my spirit, it’s summoned quite the opposite. The greatest appreciation for life itself,” he said. “So I will never give up. And I will never give in. I will continue to keep fighting, sucking the marrow out of life, as life sucks the marrow out of me. I will live my life full of love and full of fun. It’s the only way I know how.” I really thought about us and how man, we really need to start to laugh again. 

The last I heard was the now famous Jimmy Valvano speech. The one with one of my most favorite quotes in the world,

“When people say to me how do you get through life or each day, it’s the same thing. To me, there are three things we all should do every day. We should do this every day of our lives. Number one is laugh. You should laugh every day. Number two is think. You should spend some time in thought. Number three is, you should have your emotions moved to tears, could be happiness or joy. But think about it. If you laugh, you think, and you cry, that’s a full day. That’s a heck of a day. You do that seven days a week, you’re going to have something special.”

I started to think, I used to see these speeches and think wow, that guy is a tough SOB.  After watching my bride, and I’m a little biased here, these guys have nothing on her. She’s going to keep going. We’re going to beat this. We just need some time.  We need to keep this train rolling. So I know, if you’re like me, you probably turned off ESPN after thirty minutes of this or you’ve donated to the American Cancer Society or one of the other great groups out there.  Look, this is a free page. I’ve never asked for anything so if you would consider this a one time subscription fee.  Most of these cancer  foundations concentrate on the sexier types of cancer.  Brain, breast, skin, whatever. There is nothing wrong with that, lot of people unfortunately have to deal with them. Few deal with the specific type our heroine is dealing with here.  In the end, what will money do, I don’t know.  But I’d hope it would bring us a little closer to figuring this out.  So if you’re going to give, please give to this. Here’s a link.

http://cholangiocarcinoma.org/get-involved/donate/

Again, I’m not asking but if you were going to give to something, this might as well be it.  So thanks and we’ll blog at you guys later.  Love to all and in closing this out, another quote from Jimmy V.  One that honestly, I had to pull over because, well…..

“I know, I gotta go, I gotta go, and I got one last thing and I said it before, and I want to say it again. Cancer can take away all my physical abilities. It cannot touch my mind, it cannot touch my heart and it cannot touch my soul. And those three things are going to carry on forever.

I thank you and God bless you all.”

 

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This Ain’t How This Love Story Ends

I’ll just jump right in.

So an update on our heroine. The radiation went well. They planted the seeds in the left lobe of the liver and there was a small artery about the size of an eyelash they squeezed it into. We’ll wait for four weeks then do an MRI to see what’s doing then schedule for the right side of the liver. What they dont tell you is about the antibiotics they prescribe. You’re supposed to start them two days prior to radiation. We started them on saturday and by saturday afternoon the downward spiral began. Nausea, sweats, chills, fatigue, and generally feeling like poo. So we went for the radiation. Even the doctor said yeah, that’s a tough one but you need to have it. Swell. So after four days of hell we wound up with a trip to the ER (which is where I’m writing from now). Every doctor/nurse we’ve told about this medication (Flagyl) bristles at the mention of it. At least three have had it and said, oooooh, yeah, I had problems with that.  The last doctor said her mouth started to water like she was going to throw up at the mere mention of it. So, they are changing up the meds to something else with a name so long it sounded like he was making it up on the spot, just combining names of different drugs because he just forgot the real name. It’s what I would do. I just heard it again, amoxifloxincillin. Still sounds like something Dr Seuss would prescribe but either way, we’re done with the other stuff. So we’ll see.

Now for a little housecleaning. Ham and cheese are doing great. Both have been supported by their friends and are in good spirits all things considering. Both girls have been blanketed by friends old and new and while we’d like to protect them, because they’re our kids, watching them grow up knowing all this is around them is pretty cool.  Well, cool in the fact they’re strong people, not just kids. You know, the kind of people that when I grow up I want to be like. Hannah received a scholarship for two years at FSCJ where she’ll be going in the fall, so yay her. They both are great kids and really I honestly, truthfully, couldn’t ask for anything more. We also are speaking with a friend (Al Emerick, a sweetheart of a guy, if you’re in Jax you’ve seen him on the Kia commercials. He’s bald, with a beard. Reminds me of a striking young man I look at in the mirror every day) about some family value mapping/counseling.  I think that will do us some good. The counciling we’re getting here, while I’m sure he’s a fine dude, just ain’t really working (the last time we were in, I think the advice was “just keep doing what you’re doing”. Thanks. My fortune cookie said something similar the other night). Also the outpouring of support from the last blog has been overwhelming.  From good friends and family surrounding us to people I’ve never (and probably will never) meet its truly one of those things that has changed my way of thinking. We’re not giving up. This is still an uphill battle.  We’re going to talk with our doctors about maybe some alternate/second avenues (clinical trials) or just to see who else they’ve spoken with to exhaust all our options. I spoke with a doctor from Vermont, a sister of the director of Haley’s production of west side story about this. We owe a lot to Beth Harvey as she’s thrown more greatness at our kids (and our family) than we deserve and our lives have been made a lot easier with her in it. Anyway, her sister gave me some advice on how to handle some of this going forward as far as medically. Not that we’re dissatisfied with the quality of care, but when the clock is ticking, and you have the dice in your hand, might as well throw a few rounds right? A post from one friend at the beginning of this spoke volumes to me. “This is not how this love story is supposed to end”. No, no its not and I still have a shred of confidence we’ll still win. And that’s all it takes right? Just a shred.

I’ve also heard a lot about how I should be a writer from people who read this nonsense I’ve thrown out here. This started as a way to keep everyone updated on our heroine and somewhere down the line turned into something else. So I’m going to turn this into a book. “How not to jump off a bridge, a caretakers tale” (I was going to go with a longer title “Tales of wit and wisdom from the side of a hospital bed from a caretakers point of view combined with stories and andectdotes about real feelings and pontifications on life events” but the more I looked it seemed a little wordy). It’s going to be the blog posts with some looking back at what was going on at the time. Hopefully, someone will get something out of it because there are times the doctors look at you as a caretaker like you’re a fly at a barbecue. Which look, I get we aren’t the patient, but sometimes have a lot more idea about what’s going on. So we’ll see where that turns out but thanks for the support again. It’s been a long few days. I’m bushed. Plum tuckered out. Whatever. Anyway, love you guys and blog at you soon.

Post blog action: Elizabeth still feels not well. Think its the radiation. Hope its the radiation. Still dont know how it went from four weeks til symptoms and fatigue come to two weeks to 48 hours. That’s a pretty big window. Nonetheless, feels less than stellar.

Big kiss MUAH!!!!!

 

The one I never wanted to write

Well, this will be a hard one. Between the tears and glasses of whisky I’m not sure which will run out first. See, I haven’t been completely forthright on this blog with all of you. As the story goes on you’ll understand why. See, Larry has pretty much given us knockout blows since the jump.  For those who we’ve told and kept things under wraps I really want to thank you. Again, there were those that didn’t need to know yet. I’ll start from the beginning.

Remember the first meeting with Dr. Mody? The one I said we would do three rounds of chemo then radiation, then three more rounds then see where we were and see about cutting this monster out? Well, there was a prior meeting with the surgeon who met us upon arrival.  Apparently, Mayo Clinic has a much better MRI than Baptist Hospital, which might be monkeys drawing on a cocktail napkin with crayons. The surgeon showed us his MRI. Which had the Klatskin Tumor (Larry), plus two more in the liver and one in an artery going into the liver. With all this and the position of the tumor, surgery was off the table. No transplant, no nothing. Then we had the meeting with Mody where I think I wanted to hear something I didn’t. Either way, this was bad.

Oh, then the saturday night ER visit and the doctor that looked like he belonged in a soap opera. Well, there was a meeting the monday after. Wherein the doctor (haven’t seen him before or since) began to talk and mentioned “quality of life going forward” a few times. Wait, that’s something you hear when old people are on their way out. How the hell does that apply to our situation? So Elizabeth finally asked the question, “Is this terminal?” His response that I remember verbatim “well, I’m not going to say yes because I’ve seen miracles happen here, but more than likely you will succumb to this disease”. Well shit.

There were a couple of days that were tough. One for me was one Sunday when I was going to talk on the phone with Dr. Joesph.  I woke up, went to the store, cried on the way there. Started shopping, cried in the bread aisle.  Went across the street to get a beer and shot. Sat outside and cried again. Called Dr Joesph and sat in my front yard and after hanging up just bawled.  I came in, kissed our heroine on the forehead (she had a friend over) went to cry in the hammock and that collapsed. Seriously, the universe had conspired against me that day.

Anyway, we went to go see Mody a day or two before Hannah’s graduation. Elizabeth asked point blank, what are we looking at here. Two years.

Two years.

The chemo will work until it doesn’t. Then once it stops, we’re on borrowed time. So ok, that was the knockout blow. It’s been pretty good since then as she hasn’t had chemo and can feel like “a normal person” so that’s eased the grief a little bit. That and the stuff going on. Graduation, dance recitals, other things. The wedding vow renewal came up on the way back from a day at the beach with my buddy Mike. The conversation was a little heavy then that popped up. I will never, ever be able to thank all of you for the groundswell of support that happened with that nonsense. Even with nothing to offer except a couple of old people renewing vows on the beach then turning you savages loose on the patrons of Atlantic beach, I’m amazed at the love.  But back to the story….

So, Mody says he will tell Ham and Cheese what’s happening. That way if they have any questions, he can answer them. That and we honestly didn’t know how to tell them, but we both agreed they needed to know. So that’s where we went today. Like I put on Facebook I would’ve given up damn near anything just to skip today and fast forward to Saturday. But life doesn’t work like that. So we went to the temple of doom.

We had the meeting. There were some tears in the room. I thought maybe they knew and maybe they did, but hearing it from a doctor is just a punch in the throat. As we left there was just terrible silence. I hate that silence, because its just things marinating. We were quite for a while until I dropped my keys and Hannah broke the silence. She understood how I said some things have been said during this by a doctor and everything after that might as well be in Swahili because its just gibberish. So we went to eat.  There were some tears in the truck. Once we got to the restaurant it was just typical conversation. Laughs, making fun of each other, all that. We got back and hung around for a while. Then went to a movie. Some stupid “pirates of the Caribbean”. Really something with no thinking involved. We all had a good time. Then we got home and the dam just broke. There’s a list of 746 things I’d rather see than all three of my girls crying at the same time. That was tough, no, tough doesn’t describe it.  It was soul crushing. Tomorrow is another day. I tried to explain that there’s no difference between yesterday and today to the girls except now they know what’s happening. Hannah actually called me out on how stupid that statement was. I’ve had time to try to wrap my head around it, they haven’t. So we’ll move on. She’s going to work tomorrow.  Our awesome niece Addie actually took the reins and emailed Hannah’s manager to let him know what’s happening. The email back from him actually brought a tear to my eye so I can only hope she does ok with it. I dont know, its going to be better tomorrow I hope. Can’t get worse than today right? Either way, I’ll throw out a few more posts now to keep everyone updated as it got difficult to paint a happy face on a situation that as the later it got, just didn’t deserve it. Again, I’ll try to keep this a little funny, because in the words of the philosopher Jimmy Buffett, if we couldn’t laugh, we’d all go insane.  Right now though, today, that laugh seems a little far away, but I’ll find it. We’ll all find it.

Love you guys and blog at you (sooner than) later.