the good stuff...

Here we are…we find ourselves back in the hospital. Twice in one week. Do we love it here that much? Doubtful. Do the nurses and doctors make it a little easier to be here? I definitely think so. What makes it a little more tolerable? The “good stuff” makes it easier…the liquid medicine is the stuff I am referring to. The meds give him a sense of well being and seem to make everything go away…not so much the cancer or the fluid but mainly the pain and the nausea. These are two things making this journey so agonizing. So, via IV, John is now, as we speak, getting a regimen of pain and nausea medicine every four hours so he does not have to feel the illness running rampant in his body.

If you were here, you would notice a constant humming in the room. The noise comes from the IV pump reverberating much like the neighborhood boy who would put baseball cards in his bike spokes in our younger years. This is at a much lower clatter level and because of this nonstop rattling, John gets the medicines and blood transfusions he so desperately needs. 

How did we get back here again? Well, like I said in the previous post, we originally checked John into the hospital after a sleepless night of pain and nausea on Sunday night. Well, it happened again. On Thursday and throughout the night, John was in constant pain from the site of his chest tube on his left ribcage, all the way around to his backside. It was throbbing and almost felt like someone constantly punching his back with closed fists and never letting up. He could not keep anything down either. If it wasn’t one thing, it seemed to be another. Friday morning we started making phone calls to his team of doctors after another sleepless night and realized he had not kept anything down in his stomach since Wednesday morning. It had been two full days without nutrients and I knew the doctors on the other end could hear the absolute exhaustion in our voices. They advised John to check into the hospital but would set up everything rather than going through the ER and getting held up in the normal Friday traffic from that department. Like we did earlier that week, we gathered our belongings, and headed to the cancer center. It was all a blur getting there, sitting in the waiting room, going through registration to be at our place again on the third floor of the hospital…the cancer wing. This is where we were just days before and all the nurses recognized us as we made the walk from the elevator to the room. From there, pain medication, nausea medication and more testing ensued, on top of an agonizing wait for John to be able to eat that Friday night. A particular test had been ordered where John was not allowed to eat prior to scanning. Now if you remember, he had nothing in him since Wednesday. It was an extensive wait, to say the least. We drained that night to relieve some pressure and continued with the meds. Saturday was full of more doctors’ runs, more meds and more hypothetical scenarios. “John, it could be this, it could be that,” they would explain. Naturally, more testing had to follow the draining to figure out what was causing his pain. Sunday is now before us and we have drained once again. Normally, draining takes place every third or even fourth day. Now, it is beginning to look as though we may drain everyday for a while. The fluid was sent out for testing today and I am starting to think the tests are now being sent out for testing. One test after another….all just to figure out what is going on in this man’s body. The “this and that” they speak of could be a blockage of fluid built up in his chest wall not wanting to come out…it just could all be stuck. There would have to be some sort of injection or surgical procedure to break up the build up, so we could then drain the mess out. It could also be the fluid back from the larger lymph nodes in his chest. This, in turn, proves the chemo regimen needs to be changed. The dosage, the type, the process…some or all of the above need to be different because the old kind does not seem to be working anymore. Soon they will figure out how to do things better from the results to continue with the fight.

There is some sort of war happening right now. The good versus the evil in his chest and stomach. The evil….well, the cancer….the good…John. All of John’s might and force fighting back against “the bitch inside of him”. We were on such a good road. You know it…I know it…and most of all….John knew it. This is a bump. It is hard to explain the feeling you get when you realize things are not going your way anymore. You hear the words….it reaches your brain….stretches down your spine as the hair on the back of your neck begin to raise….and finally, it gets to your heart. Your heart begins to hurt. This sudden change in progress does not make sense, but we keep reminding ourselves it is a part of the journey. Someone asked me the other day, “…why/how do you stay so positive?” My response to him,

“What are we fighting for if we didn’t?”

So, we call this home for now. I sleep here every night with John and run home early in the morning to shower only to return an hour later with goodies from the outside. He is getting used to the hospital food, though low in the taste column, I know still made with love from the downstairs cafeteria….and best of all, full of calories. Our goal is to still continue to gain weight now that his nausea is under control while we figure out the fluid schedule and the growing nodes. In this home we have now, we have so many amazing caregivers and wonderful friends visiting to bring us laughter. It is with this that we ride this wave out and continue to love as much as we can to beat the setback. Thank you to those who follow and for sending your love and sweet words. He is the most amazing person I have ever met and am in complete awe of what he has accomplished thus far. When we speak of this journey in our old age, I will continue to remind my soul mate of how instilling his strength really is for every one of us.