6.05.2010

home...

When you walk into your home, even if you were blindfolded, you would know exactly where you were standing. There is a feeling you get, a certain smell you remember, and an intense sense of comfort you have stepping through your front door. We finally feel that now…because we are home. Our own bed, our own shower, our own smell, and our own life again. No more scheduled nurses and doctors parading through the door with no sleep, no more bleach smell, no more paper sheets. Do not get me wrong, we are so thankful for all the great care, but we are even more relaxed within these four walls. At the same time, home comes with a lot of responsibility for us.

We stayed in the hospital for a total of 9 days. Days 6 and 7 consisted of waiting. Since it was the weekend and Memorial Day, there were no scheduled times surgeons were working. John was scheduled for Tuesday to get the large drainage tube removed for him to be then fitted with a smaller, at home drainage tube. Tuesday then turned into Wednesday due to the backlog they had in the surgical area. Meanwhile, John continued to drain little by little until the day of his procedure. Finally, day 8, he was taken downstairs to the center and I was in tow next to him. As we waited, the nurses fitted him to continually take his vitals and the doctor came to speak with us. He said the tube would be significantly smaller than the first tube and we would later be taught how to drain it at home in a clean environment. We looked at each other and realized we had a great duty on our hands. There are many risks, just like we experienced with his feeding tube, of infection and fall out. They kept him overnight for observation and to give him antibiotics and sufficient pain medicine to keep him comfortable throughout. Comfort…what an interesting word. I do not think John has had a day of comfort since we found out about the diagnosis. His body is trying so hard to recover but ends up fighting back at him. He has the obvious pains from the countless procedures he has undergone and when that subsides, he then feels the throbbing from his abdomen. It has been that never ending, painful cycle yet he still finds his smile from deep down and brings it out as often as he can. Day 9 was his release. We were busting at the seams waiting for signatures from several doctors and the training I needed to begin the draining from home along with the equipment. That day seemed to take longer than the 8 days prior. Finally, we got what we needed and were together, outside, loading in the car. It was so nice to be outside and driving home with my husband this time. Every time I went home every other morning to shower and quickly return, it was without John…and this time, I could look in the passenger seat to find him right there with me. It was a great feeling.

Since then, he has spent the last few days in bed. Slowly he is regaining his strength to walk and needs the help to get out of bed due to the procedure still being so tender. We have had two successful drains at the house. I look at his thinner frame and see the tubes sticking out of his body and the port jetting out of his chest are noticeably more evident. It has to be exhausting…utterly and completely exhausting. The one thing we have noticed exceedingly different is his eating. He is eating a lot more than he has been able to in the past three months. Slowly but surely he is getting cravings again and wanting to eat rather than an Ensure or accessing his feeding tube. Little celebrations…we rejoice every single one of them.

Monday is when we meet with the oncologist again to find out what steps to take next. We still do not have the results from the CT scan but we hope to have those on Monday as well. They want to get started on the chemotherapy as soon as possible. This will hopefully be the last leg in his recovery from this disease. The fluid was another bump in the road and we have made it through it just like we will this cancer…with great success and love.

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