This is my week off of chemo. I went in yesterday for a consult with Dr. Gregory to see how things were going and I found it a bit disappointing.
I was under the impression from Dr. Buadi at Mayo that after two sessions we would be discussing the effectiveness of the current treatment. That was my expectation regarding my consult with Dr. Gregory as well. Unfortunately not all the tests results were in, most notably the 24 hour urine test. This test is important for measuring kidney function. My creatinine is still at 3.2 (stable) but my albumen level is low and has been for the last month. The albumen is a protein that is found in the blood. A low number in my case is just another indication that my kidneys are not working well. The results of the 24 hour urine test will show how much protein my kidneys are losing or spilling. I wasn't particularly surprised by the low albumen number as I have been feeling like I've been retaining more fluid primarily in my midsection. However without knowing how much protein I'm actually losing I don't know if it's something that would need to be treated.
I remember after the BMT I was given IV albumen along with lasix. Combining intravenous albumin with lasix is often used to treat accumulation of fluid in the abdomen or tissues. Albumin remains in the circulation for a while and increases the plasma osmotic pressure (pertaining to or of the nature of osmosis, the passage of pure solvent from a solution of lesser to one of greater solute concentration when the two solutions are separated by a membrane which selectively prevents the passage of solute molecules, but is permeable to the solvent), helping to draw fluid back into the circulation from wherever it is accumulating. Lasix helps to get rid of the fluid in the urine.
So as a result, with some numbers in and others pending this consultation was much like my last one a month ago. I am tolerating the few side effects I am having with the Velcade and I have not been hospitalized with illness since starting on this protocol. All good and as far as Dr. Gregory is concerned worth continued treatment. When I indicated my dissatisfaction with not having something more definitive she told me I need to be patient. Clearly not one of my strong points.
While I feel the level of care I am receiving at Rush and from Dr. Gregory in particular is wonderful it was pretty obvious yesterday that I am being treated as one would treat someone with myeloma. Amyloidosis is rare and tricky and Mayo is a center for excellence in this disease. I am seeing Drs. Buadi and Leung at Mayo on June 10 and we should have all the results for the tests I had run yesterday as well as the results for the tests (pretty much the same ones) that they will have taken at Mayo on the 9th. I'm hoping that this consult will be more satisfying.
My "roid rage" apparently continues even when I am not taking the steroids. In must frustration at not getting a more concrete idea of how well or not the Velcade is working I lit into my poor father on an entirely different subject. While I have apologized already I still feel badly. I think because I was so frustrated in an area where I feel I have very little, if no control, this disease, my release was to go after something that I felt was controllable (deck issues at the lake). How wrong I was on so many levels. What I have discovered is that one of the few things I can control is my temper and I need to do a better job. I might be ill but I needn't be unpleasant as well.