Hello my dear sparklers! So many things have happened since our last visit to Moffitt last Friday. We drove up the Thursday before so that we wouldn't have a 3-hour drive in front of us traveling up there for DH's appointment Friday morning. As most of you know I HATE that drive...it freaks me out to the max. I don't know if it's the highway driving, the worry of getting DH out of our big SUV and into the hotel room, the fact that he was always the navigator in our family...mostly the fact that I've had more than my share of car accidents in my lifetime and most of them occurred on the highway. Whatever the reason I HATE long distance drives on the interstate. BUT...we made it!
I had purchased a little rolling walker for Don and cussed up a storm assembling it the day before we left. It's a pretty cheaply made piece of equipment but he pushed it into the hotel room pretty easily so it definitely served its purpose.
The news from our Oncologist was NOT good. DH's Sarcoma has moved from his groin to his lungs and the last CT they took shows that it is now in his liver. The doctor basically told us that this is the end of the road and wrote a prescription for a heavy duty pain patch which I filled right there at the pharmacy at Moffitt Cancer Center. Thank the heavens for our Geriatric Case Worker down here in Naples who guided me to get extra help on our Medicare Prescription Plan. The cost of this pain patch would have been well over $150 but she said the best they could do to help us out was $41.00 which I thought was a bargain. BUT..then I remembered I had gotten some correspondence determining we were eligible for lower prescription pricing. After I gave her the paperwork I had received from the Insurance company she researched it and our price fell to somewhere around $3.50....halluluhah...I was SO happy!
During the drive back home we both did a LOT of crying. DH is scared of course.. and me too...I've never been on my own in this big bad world. Moved out of my parent's house married very young at the tender age of 17, had a daughter and lived 10 years with an overbearing, abusive (verbally and sometimes physically) husband...got out of that marriage with the crazy husband stalking me EVERYWHERE! Met DH as a really good friend (he was coming out of a crazy long term relationship with a crazy woman) and we basically listened to each others crazy stories and encouraged each other just to stay sane amidst all of the insanity flying around us daily. A year into the relationship once my divorce was finalized he asked me to marry him and of course I was smitten by this kind, understanding, decent man and said yes. So right out of one marriage into another. We've been married 41 years and have worked together for 30 of those 41 years. You can tell just from those statistics that we are closer than a peanut butter and jelly sandwich.
Having no family always made that connection even closer...it was DH and I against the world and we were a dynamic team. Ran a 2 M dollar construction business for almost 30 years until we lost our only child, our beautiful son Joshua Gavin in 2006. That took the wind out of our sails in a harsh and tragic way. From the time we lost Josh I questioned everything we had ever done to build that huge business...why did I spend every moment of every working day chasing the almighty buck...WHY didn't we spend more time with our precious son? Why did we drag him around to sales calls and have him sit in the car drawing pictures while we were ALWAYS working? WHY was it so important to us to keep up with the Jones fabricating our perfect little lives full of material things? When he left this earth our hearts and souls left with him...NOTHING and I mean NOTHING mattered a whit to us anymore.
Then the housing crash in 2008 was the final blow...we knew that our construction business was no longer pulling a profit. People who were living in houses that were worth less than they had paid for them in the first place stopped remodeling them. Our business was concrete...a decorative coating over the concrete slab in many different colors and patterns. We started falling behind on payments and it was a living nightmare.
Our circle of wealthy friends that we had known for years and years when we at the top of the food chain started acting subtly different towards us. Where we used to be the BIG fish in this circle we were now reduced to minnows.
We should have left the group of 20 some friends right then and there. When these idiots started acting like we were lesser than...it occurred to me these are NOT friends at all.
But old habits die hard my friends...especially habits of decades. We continued to socialize with these people and I was mostly miserable most of the time.
Being an apt blogger I wrote about them often and you... my astute sparklers questioned me over and over as to why we continued to hang with these phony balonies.
I finally listened to you a few years ago and we resigned from the group. I sent out a group e-mail and pretty much told the ringleader of the group that she was really no more special than anyone else...or for that fact....any more entitled than any other person on this earth.
In any group there is a hierarchy and because this couple moved up to the top of the money pile after we fell off of it the group naturally gravitated towards this woman and her husband as the people 'large and in charge'.
She was who I considered to be my best friend for many, many years...until I realized that the friendship was pretty lop sided and went smoothly as long as I agreed with everything SHE wanted to do and went along with all of her wishes and opinions.
Once I started pulling away from that 'bow to the Queen' status... our friendship suffered some chasms. The only reason I did this resignation from the group via group e-mail is that I KNEW if I didn't... the rest of the group would NEVER get the full story on why the hubs and I dropped out.
I mean REALLY life is worth so much more than what vacations you take, what model of car your drive, how much your house costs and if you carry designer bags...it all seemed so silly to the hubs and I after we lost our most VALUABLE contribution to the world...our dearly beloved son. This materialist stuff is just an illusion....you can't take it with you can you?
It was the right thing to do at that time. I felt lighter getting away from such superficial people. It's only been very recently that a few of the women have reached out knowing how gravely ill DH is. I'm trying not to hold malice in my heart but I'm understandably hesistant about trusting these women again after the poor way they treated the hubs and I after we fell off the 'money horse.'
But back to Hospice..they are remarkable! The doctor at Moffitt referred us to them. I guess he has written DH off as far as hope for the future. I won't accept that he doesn't have a chance...even if it's against all odds.
I'm logical enough to see him deteriorating and I don't want him to suffer...but I also know that miracles happen every day. I've seen some pretty remarkable recoveries with cancer patients using off-label drugs that most of us in the mainstream have no idea about. And...why is that...because the patents have expired and the big pharma companies can't make BILLIONS off these drugs. If you want to know more about this as a cancer warrior...or know someone who would find this information valuable please sparkmail me and I'll be happy to share what I know about this information. It might not work in every case...it might not work for my beautiful husband because his cancer was so entrenched by the time I heard about it...but there are hundreds of stories of people it HAS helped when they were sent home to die byt the traditional medical community.
He is now down almost 50 pounds. It's a TRUE struggle to get him to eat ANYTHING. He now has oxygen for when he has a hard time breathing. He has a walker and a cane... we are thinking about a hospital bed since it's hard for him to get in and out of bed since the mattress is pretty high off the ground.
When I found that the oncologist had prescribed him a pain patch of Fentanyl I freaked...Fentanyl...that was what killed the singer Prince...we all have heard how dangerous it is...was this patch going to kill my hubby? I wanted to help him with the horrible pain but would this patch be dangerous?
The Hospice nurse helped me understand that this is a very small dose and it is better to block out the pain as best you can. So hubs now has the patch on...but I can't say it has helped him a lot...maybe it takes a while to get fully into his system we will see.
So as always I ask for your powerful prayers to wrap the hubs and I in peace during this scary and dangerous storm raging through our lives right now.