Monday, April 28, 2014

Plan or no plan that is the question....

And I honestly am not sure about the answer...

Went to my doctor today and we talked through a plan. I'd get the port in on Wed and start rituximab on Monday. It is not chemo but a drug that attacks a protein in HCL and breaks down the leukemia. I'd do this drug weekly for 4 weeks outpatient, watch my counts then chemo plus more rituximab.  We figured the first round would buy us some time to let the NIH tests run their course since even if I don't do a trial now the next option (or any after that) would need to be trials through NIH.(It has become clear this doctor at NIH holds the keys to my longer term survival!!)

Chad and I came home feeling better and then I got a call from the doctor at NIH. The tests were back. He thought I should start on rituximab only. Sounds great - consistent with what we had already decided with my doctor here. Then he started asking me questions since he just got my blood work history from Dec through last Monday. When he understood what my counts were upon my original diagnosis and that I was transfusion dependent when I started chemo he got a bit of a different opinion.... so, have asked for the rest of the blood work records and other key tests to get sent to him tomorrow.  Regardless I think we will start with the port to make the bi-weekly plus blood draws and treatments easier. My poor veins and arms are shot so actually am excited to get a port (as crazy as that sounds!).

On a sad note, our fish (yes, the fish we just bought yesterday) died today. Poor Bob and Fluffy did not fair well at chez Withers. I've told the girls I think they may have died from sadness over their awful names (they were dalmatian mollies). Katherine's response was "No, Mom, they just did not acclimate well".  Bob and Fluffy have had a bit of a fish funeral and have been sent out to sea.

On a positive note, the plumber replaced the damaged pipe and we no longer have a leak in the basement. He even cut up the old copper pipe so Chad and the girls could take it to the scrap yard and see what they can get for it (another side effect of watching too much Rehab Addict on HGTV!!).

So we have resolved the pipe, no longer have fish and just need to fix the mom!! We might have a plan, or might not, after the big pause at the 11th hour 2 weeks ago and the evening call from NIH will believe it when it happens but fingers crossed things will move ahead this week.

1 comment:

  1. Beth - good luck with the port surgery. It will make life alot easier on you as well as at the doctors office . It will be sore for a bit, but then you'll forget that it's there. Prayers going out to you and your family. NIH is a great place - I know between your Cincinnati doctors and those at NIH, you are in awesome hands!