Newport Beach, CA, USA
Thank you all fo ryour continued support and prayers. I am sorry I have not posted anything in so long, we have been busy with the holidays. Christmas was difficult, trying to balance family needs to have some sense of normalcy with Calebs need not to be alone on christmas. Thanks to the friends who came to visit that day.....
Last week we received the devestating news that the new tumor is inoperable. At the beginning they told us the only way to fight this cancer was to cut it out, and keep cutting it out when it returns. To tell us they cannot cut this one out pretty much took all our hopes and dashed them on the floor. It was a very difficult week for all of us.
This week he is doing pretty well. Yesterday they removed the catheters for dialysis so he is officially through with that.....(happy dance time for the felling of the dialysis machine). His numbers (its always all about the numbers) are all coming down...white blood cells, calcium, etc - all the things they have been concerned about the last two weeks.He has had no fevers, positive blood cultures, infections etc for several weeks now and his kidney function continues to improve, as of yesterday it is working at 60% (after only 20% last week but that number does fluctuate a little based on what he eats etc). He is moving himself around in the bed pretty well even without the trapeze. SO, if you disregard the fact of his cancer, he is oding pretty good medically. He does still suffer the pain in his legs and feet but he says it is slowly getting just a little better. I confess to being concerned about the fact that he says part of his legs ar e numb, I will ask the docs about that friday when I am there.
Tomorrow he will have the PET scan we have been fighting for. It is essential to knowing exactly how widespread and where the cancer is. He is anxious about the ambulance ride he will take to the diagnostic center and about the needle they will use to inject the necessary dye. I confess I am terrified about what they will find out. But I also believe we really have to know, especially in order to make the best most informed decisions we can about his care, now and down the road.He i sjust finishing his second week of radiaiton treatments and so far the only side effect is complete exhaustion...the treatments themselves are not too bad and only last about 20 minutes but it is a huge ordeal to go there and come back. He must transfer to a gurney, be pushed through an underground tunnel down the hill to another building. be transferred to the hard cold steel radiaiton table, and then do it all in reverse to get back. He is usually 90 minutes away from his room.
He is suffering some pretty heavy depression this week and rightfully so, he has much to be depressed about. He needs support more than ever....
That's where we're at -- his radiation treatments will last about 6 weeks - he is getting 28 days but that does not include weekends and holidays. So far he has had 7 days....25% done. If he were up and walking around I am confident they would send him home and do radiaiton as an outpatient. I believe the only thing keeping him in the hospital now is the fact he is not ambulatory. Oh yes, i fyou do come to see him, be forewarned he has lost a lot of weight, he is down to 159,. less than half what he used to weigh. They told us at the beginning every dau you lay in bed you lose 3% of your muscle mass, and I can se eit is true. He has virtually NO muscles left in his legs...he is so thin his shin protrudes and his calf skin hangs form his bones......his hips are bony and thin.,.....it is very discouraginf to see him this way. I don't know how anyone expects him to stand when there are no muscles in his legs to hold him up. I fear if he catches the slightest cold he will not be able to fight it.....I am trying to ge thim to work on some muscle building exercises with me and to eat more protein to build muscle...mostly he does not want to dealw ith it. ENCOURAGEMENT folks - that is what he needs this Christmas!