Monday, May 08, 2006

Big Love

No, not the HBO series about polygamy (although I must admit that I really like the cracks me up and makes for very interesting conversations). I'm talking about the incredible offers of help that have come our way these past few weeks. I just want all of you to know how much it has meant to us and to me in particular. And, yes, I am trying to find ways to accept them.

We met with the oncologist on Thursday. Dalton had to go in socks, because his feet were too swollen to fit in his shoes - a rude reality check on just how swollen his legs really were. For those of you who've been with us since the get go, Dr. Iqbal (ick-ball) is back from maternity leave, and this was our first time seeing her since January. In addition to the obvious question of getting the cancer under control, we talked about Dalton's gurgling cough, the swollen legs, and confusion/fatigue. The good news is that Dalton's kidneys are still functioning well, so he is able to take some meds to help get rid of the fluid buildup in his legs. The not-so-good news is that the fluid is there because his blood protein is really low and the blood protein is really low because the liver isn't functioning especially well. They also prescribed some meds for the cough and believe it or not, gave him some ritalin for the fatigue/confusion. That's my husband - hyperactive! That one is at his discretion and can be used if he is having difficulty staying awake or focusing and doesn't want to sleep through it. As usual, I've been to the pharmacy 5 times this week and that's after having friends make two of the trips for me. You know those commercials where the Sav-on pharmacist knows you personally by name? That's me!

Even though it had only been 10 days since the last chemo (normally they wait at least 14), Dr. Iqbal decided to get Dalton back on a Friday schedule. Thankfully, Dalton's blood (red and white cells and platelets) tolerates the chemo well, so it isn't too risky. Unfortunately, we lost out on the "best" part of the cycle. Days 11-14 tend to be up days when Dalton can talk and visit with friends and play with Iain. Instead, he's been kind of out of it. At the same time, Dr. Iqbal felt the scans showed stable disease, so Dalton isn't switching chemos yet. This is a good and probably buys us some time.

We have an appointment at City of Hope (COH) next Monday. It's closer to the house, we have friends down the street who often help with Iain, and they (COH) were fabulously attentive to my mom while she was there. Every time Dalton ends up at USC/Norris hospital, we toss around the idea of switching, but circumstances have always convinced us otherwise. After this last experience, however, we want to get into COH's system and see whether we'd be better served there. To be honest, though, I'm a little nervous about going. Our current docs don't talk in timelines. We don't ask; they don't offer. My fear is that the COH doctors will tell us what we really don't want to hear. It's one thing to know what the statistics say and see what is happening to the body. It's another to hear phrases like "You have ____ long to live." Doctors take such authoritative tones and right now, God needs to be our authority. Don't misunderstand, He is the authority, but I need my spirit to recognize Him as such. Fear can counteract that and make us all go to very dark places, and I want to stay out of those places as much as possible.

Since getting home from the hospital a week ago, Dalton had been sleeping in the chair in the living room. It helped to keep the fluid from pooling in his lungs and therefore helped with the cough and the gurgling and the pain. I think that the lungs might be getting better, though, because last night, he was able to sleep in our bed! Thank you , God, and keep praying.


Anonymous Anonymous said...

Tricia - COH is an amazing place. You can go there and still keep God's WORD and God's timetable as your absolute AUTHORITY. You have to decide to live that way anyway and I will pray that you do. But City of Hope is a very very good place and you need to go where you can get the best care and service and it sounds like you all have put up with a lot you shouldn't have at USC. I would get over to City of Hope and enjoy their rose garden in bloom!! Bless you. Feel the prayers, Michelle and Mike Lowe

11:13 PM  
Blogger arlene said...

just wanted to let you know that even if you dont see much of me or hear much of me you still in my heart and prayers

6:58 PM  
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