This is probably one of the most difficult posts I’ve written in this blog.
I’ll start with the good, fun stuff though…
In the beginning of the year, I decided that I wanted to take MJ and the kids to Disney World. Traveling had started to become a little more difficult for me and I wanted to be sure we could do this trip without any issues. So I booked the trip and went all out. Got a room at one of the Disney Resorts. MJ and I made reservations at a couple of restaurants, and the kids and I picked all of our Fastpasses. We got 6 days of tickets! This is a really big deal for us because we usually travel very frugally.
We got there and had an absolute blast. We all had so much fun with very little bickers.
Back in March I had started to have some issues with belly swelling. Nothing too terrible, but noticable. Having just a little trouble with the button on my pants. No biggie. I continued to swell up to the trip. By the time we went on the trip I actually had to buy new pants. I knew there was an issue, but it was something I wanted to take care of after the trip. I probably shouldn’t of waited, but I can’t change that now. And I have no regrets about going on that trip.
So back to Disney… I was supposed to do a scuba dive in the huge aquarium they have there. It was just me in the group which was super awesome. I got suited up, got my BC and tank on and got into the water. Because of the swelling I could not catch my breathe. I tried and tried everything, but I just couldn’t do it. It was heart breaking and I knew at that point things were bad. I had let things get very bad.
On the second to last day to going home, we had split up that day for awhile and for my last ride of the night I got on the Rockin’ Roller coaster. Total blast. I go to get off and the person next to me is standing over me waiting to get out. I’ve been pretty slow getting in and out of the rides because the swelling had also moved into my legs. My bag got caught as I was pulling it out and I was flustered by the girl standing over me that as I tried to pull myself up I fell out. Fell pretty hard on my shoulder. I was OK but pretty embarrassed. Then the following day, I was still a bit sore but managed to walk around without issue all day, until the end of the day, that is. I had to use the restroom and I was the only one so I left my stuff with those that were waiting and I headed up the walkway. I heard this man yelling at his kid, “Hey! Pay attention! You’re not looking where you’re going!” and before I knew it, his feet were tangled in mine and down I went. HARD. I fell right on my swollen belly. I’m not entirely sure, but it felt like one of the worst falls I’ve ever had. It took awhile but I was finally able to get up and finished out the night quite sore, but I managed. No rides though.
As we packed to go home I decided that I should probably go get checked out right away. I still had a lot of pain, of course, but who knows what else was happening. Internal bleeding? Brusing in the wrong places. Plus this whole swelling thing. So I went straight from the airport to the hospital.
Getting to the hospital confirmed what I had thought was going on… ascites. Ascites happens when you have worsening portal hypertention -which I do, and usually when your liver is starting to shut down.
It’s very uncomfortable and there’s not much they seem to be able to do. I’m taking diuretics and at the very most they can try and drain some of it.
Now for the really bad news… While I was still in the ER they did a CT scan. The ER doc came in and told me from the scan that I am full of metistatic disease and he put in an order for a consult with Hospice.
Right now I’m numb. Everything is surreal.
Once I was admitted to the hospital they actually sent someone from Hospice to my room. I haven’t even had a chance to talk to MJ about anything so I told her I wasn’t ready. That I’ll call someone when I get home.
I did take a peek at the brochure. It’s full of lucky old people.
I’d be smiling too if I didn’t have to consult with Hospice at 42. I can honestly say for the first time in the 3+ years that I’ve had cancer, that I feel like this is totally unfiar.
Kairos Time 
I love you.
Love you to pieces..
I’m sure it does seem unfair that as a 42-year old you’re being referred to hospice and maybe nothing I will say from here on out will seem right. But if those old people knew all the things you’ve gotten to do in your 42 years– (and I’m only going to list what I can remember, which I’m sure is going to fall short of all the good stuff) fall in love with the love of your life and eventually be able to marry her, despite the fact that she is a woman and one or both of you were coming out when you met; had a family with 2 little kids and a range of pets who adore you; got to work for a company in a field just suited for you — technology — and got to play with and teach all kinds of people how to enjoy these different gadgets; got to retire when health issues got too big because your stay-at-home wife went back to work to support you in taking care of yourself; got to travel to Europe, Australia, South America, Mexico (might be wrong about some of these ) and Disney world; got to swim with dolphins, hold koalas, ride rollercoasters, ride rapids, meet people in your hometown’s sister city and get a day declared for you (do I remember that correctly?); AND you got to defy the odds of a very bad cancer prognosis by living way beyond what was projected and write a popular blog about your experiences — they might think it’s unfair too.
You’ve lived more of a life than probably most, if not all, the old people in hospice. And you might defy the odds still.
Big hug to you and MJ, Heather. Love you.
Heather, you are the most positive courageous people I have ever known. I love you so much! I remember the very first time I met you in San Diego we had blast those 3 days before we went to Alaska. I knew then we were family and that you were my niece. Keep fighting. God smiles upon you always.
It is totally fucking unfair.
Love you. ❤ ❤
Heather, no words…. lots of love, hugs, and especially prayers going being sent your way.
Dear, dear Heather,
What a blow after all the times you’ve beat the odds and have been able to live life to the fullest. You have been so courageous–an inspiration to everyone who has followed your journey. And your vulnerability is so engaging–so many would have crawled into a hole 3+ years ago, but you have put yourself out there and have brought us all on your journey–the ups and the downs. I’m sure we’re all still with you, no matter the outcome. We are all better for having known you and that’s because you’ve truly allowed all of us to truly know you–not just a superficial version of you. You are loved and admired beyond measure and will always hold that place in the hearts of those who know and love you. You’ve beat the odds many, many times. For all of us, there comes a time when the odds beat us. No, it’s not fair if your journey on this planet is ending at 42, but as I saw what Vinka said, I have to wholeheartedly agree: You’ve lived a life that is probably way above and beyond any experiences people twice your age have had. You’ve had a great ride. If it’s time to get off, so be it. I certainly wouldn’t want to see your life prolonged if it has no quality and in my book, you’ve squeezed out more quality than most of us can even imagine. Much love to you, MJ and the kids. Squeeze out what you can–whether it’s another year or another month. You, of all people, know how to LIVE! I’ve learned much from you.
Until we meet again…
Heather, beloved handmaiden of God. Hold steadfast to your faith in God, He will never fail. You continue to be in our prayers. You have, and continue to be an inspiration to us all.
Heather, “Hospice” is a hard word to receive. For you. MJ. The Kids. Brian. Me. All others who love you. This stinks and I’m sorry that this is what you are dealing with. I’ve told you many times and believe it with my whole being that you are a living testimony of God’s miraculous love. Others have noted your life of abundance, not in spite of, but because of cancer. Most of us put off living until later. Thank you for not doing that. Showing that life is what happens while we make other plans. I love you and your family and am sending Holy Light to you all.
Love. Live. Laugh. You’re an expert!
So not fair! I’m thinking of you and your family daily.
Krueger! I just got caught up, and WOW! I know everything sucks right now, and I’m not going to pretend to understand everything you’re going through, but I just want you to know that people out there still think about you, always love you, and feel touched by your presence, no matter how long ago nor how insignificant it seems now.
I cracked up at the hypochondriac stuff! Glassmen days? haha! I know I lived in my little bari-world during those times; I did’t spend a lot of time in mello land (French Horns, yes, Altos not so much, lol, man I hated that instrument!) You and Misspa always managed to make me smile, either by sheer joy in your approach, or, sometimes, absolute silliness! What a huge luxury it was for the Glassmen to have rocks such as yourself to propel them into Excellence!
Anyway, whatever you’re going through, I know you’re taking it on with gusto and quirkiness! I can see your sense of humor throughout your blog, no matter the content. Ride that out. You got this.
With much Love and Respect,
Bob Higgins
Glassmen Brass Staff, 93-96
I just want to state for the record that hospice is not a death sentence. I have had clients receiving hospice services for two years or more and then graduate off of hospice services. There is such a stigma of hospice services which is a shame because they are really great services. I’m not a medical doctor and I don’t know the severity and prognosis of the medical condition you’re facing. And I don’t want to give false hope but I also know there’s no expiration date stamped on your forehead by using hospice. All I know is that all anybody can do is to keep on living life to the fullest. And if there’s anybody who has perfected living life to the fullest in spite of what has been handed to you it would be you.
Be with Mary Jo. Let her be with you. You need each other. Don’t let others try to keep you apart at the time you should be together on this journey. It IS a journey, one you don’t want to be on, and sadly we can’t change that part. To be surrounded by the love of the love of your life, to let yourself feel and have that love, and give that love, is healing in itself. We all cease to ‘be’ on this earth at some point in life, but ‘we’ ARE forever. Let the love win. Let the love win. Let the love win.
I have stumbled across your blog and am genuinely blown away. Your life, your love, your experiences are so very important. I am too going through the rigmarole s of liver cancer and have begun to record my journey. It is so important that people like you are there to inspire others to share their most intimate vulnerable stuff. Dr Google can only give a fellow sufferer the cold clinical facts.I personally need to hear the experiences of others who have and are going through exactly the same. I feel humbled to have read your blog.
God bless you and keep strong xx