Saturday, June 12, 2010

Guardedly Optimistic

June 12 Already.

I wasn't going to post, but it is an upward trending two days and I started writing this in an email and decided to send it out to all. It is in God's hands, I've come to that peace, and I also know that the appeal process is working.

I am exhausted beyond belief but have more strength than Gene right now so I'm not in conservation mode despite what everyone tells me, it is all for Gene.

If we can get him to a resting place, I will rest a bit as well.

Yesterday he told me he wanted to give up, didn’t think he could make it through the day. He was spiritually and emotionally broken, and exhausted beyond imagination. After a week off the ventilator he is still not strong enough to be cleared to swallow on his own which means the nurse (not even me) is in control of every little ice chip and if he coughs one, that’s it. And that sucks so huge. Many docs and nurses, chaplain and social worker, came in yesterday to tell him that it was not time to give up. That he is on a plateau and given where he was a week ago, that is huge. And, importantly, that they will tell him if it is time to switch to comfort care only. Gene asked his oncologist how to get hospice started and Dr. Mason told him that he could not sign hospice papers because everything he has is treatable and not terminal. They started him on prozac. I spent the night at the hospital with him, an even more difficult task in icu as there is not option to put a cot in the room so I was in the very uncomfortable chair that I'd previously complained about. (One of the many lessons….things can always be worse, don’t complain but be thankful for what is. Thought I knew that one, but guess not.) But I could talk to him and hold his hand when they woke him every few hours and he told me this morning that helped tremendously. My sister is there now and she said he is doing better in all ways, numbers are good, they are going to start some very limited physical therapy, and hopefully be able to get him on a "bi-pap" machine for nights and naps to give him some rest as breathing is consuming all of his energy. Docs hope to see results of new drug working on Monday. I am taking valium so it could be the drugs talking or blocking but yesterday as he was telling me it was the end, I was looking at him stronger, talking more, ventilator wounds healing....looking better than he had in weeks, and I just didn't believe it.

The climb out of this pit will be long and arduous and we could still slip and fall, but I am, to use another doc's words, "guardedly optimistic" and so so tired.

Prayers are for cmv virus to be cured, liver to improve and strengthen, GvH Disease to be addressed by new drugs, skin to heal on his torso, and Gene's spirit to be supported. And strength from somewhere left inside me to be accessible to me, or more given.

I think Gene’s sister Emilia and neice Christina are due in town on Sunday, which will be a perfect time for more family support…..don’t want my lifeline Esther to burn out and she is doing frontline work and home support. Keep the prayers coming, and thank you for them. I got to kiss Gene on the lips yesterday. Everyday is a gift, no matter how difficult.

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