So many people have offered to help my family and I with this struggle. The response from friends, family and people I don't even know has been humbling. I had no idea that I had touched that many lives. This help has come in many forms, from food to house cleaning offers to taking Myah so Tami and I can focus on each other or get through a chemo weekend. I am so touched by all of this generosity that I regularly devolve into a blubbering, sobbing mass trying to say thank you or put into words how much it means for this person(s) to do what they are doing.
I have so many dear friends. Since our little family unit has covered more than a few states in our 14 years, many of our friends are distant. That makes it difficult sometimes to communicate or offer to help. Some have gone so far as to offer to fly down just to see me or hold my hand while I struggle. These are some of the most amazing offers to me. That I would mean so much to a person that they would get on a plane and plan a trip consisting of multiple days just to be with me for an hour or two, boggles my mind.
This has been offered many times and actually scheduled more than once! I want to say to these people that I'm not worth the time and expense for such a short period of time and a completely uncertain set of circumstances. Depending on when they get here, I may be actively involved in a chemo treatment which can result in a confused, sweaty, falling down, wracked with pain (etc.etc.etc.) Jake. That's not how I want my friends to see me. But I am quickly reminded that it wouldn't matter to them. I'll always be their Jake. I may be fine one minute, involved with conversation or doing something outside of the house...and the next be couch ridden with pain or nausea or something else entirely. To which I am again reminded that it doesn't matter. If a two day visit turns into a 1 hour meeting they have achieved their goals, I've been told. These are amazing people.
I still maintain that, logistically, that is a lot of effort for an uncertain audience with little ol' me. But I've been learning to just go with it. So...if you live down the street or across the country and want to see me, here are the ground rules:
Try to come on a non-chemo week. Your return on investment has much greater odds at being positive.
If you have to come on a chemo week, just be aware that the visits will be short and you need to be prepared to see some demons, because that's when they have their day. It's not a pretty sight and sometimes turns into borderline horror show. It's hard to watch and if you don't want to see me at my worst, stay away from chemo weekend and the first part of chemo week.
Be ok with me passing gas, hocking up ungodly looking stuff from my throat and running to the sink to vomit. These occur daily and I can't control them, well not so much the vomiting...but definitely what sounds like it. If you don't like blood, I'm sorry. A lot of it comes out of my nose and throat. I can't do anything about it, so any uncovered trash can in the house looks like it's been ringside at a boxing match.
I might fall down. I might not be able to get up off the couch, or out of bed. I might be stuck in the bathroom. These are things that can happen at anytime. I can't predict them or control them.
OK...Now that I've scared everyone off...time for a quick status update!
A lot of people have been asking since my last blog post. My answer is this. MUCH better...for the past 48 hours. Friday was a good day at work. I got more accomplished than I was expecting and I got my wife to try Turkish food. :) Saturday was a complete surprise.
I felt really good when I got up that morning. We had planned on having my Dad help take down the unnecessarily large Martha Stewart Christmas tree in our upstairs loft. I felt so good that I took two of the pieces down myself, navigating stairs and hallways and corners all on my own. When my Dad arrived, he had my mother in tow and she was hellbent on cleaning. Everyone was involved in something and all expected nothing from me aside from the occasional wave from the couch. What they got was so much more. I vacuumed the entire house...both floors...including stairs! That's over 2700 sq/ft of carpeted area that I rocked with my (wife's) Dyson. Oh Yeah! Then I helped clean the kitchen and put away boxes in the garage (which required climbing a ladder several times...). And then? I helped hang a curtain. BOOM! SuperJake
Today I didn't feel as good as I did yesterday, but I certainly felt better than earlier in the week.
Tomorrow I drive myself into work and start on another phase in my project, so I'm feeling pretty darn good about that too.
Whew! I'm tired just typing that. :P This isn't to say that I won't wake up in the morning and not be able to lift my head. Such is the ever shifting line of reality in my new world. But I'll take a good day any day!
Start the week off right. Get up and think about those days that you felt like a superhero...then try to have another one.