Author's Quick Note
Oh my gosh - I forgot to tell the best news of all! Jack's cancer markers went down this month!!!! And his weight went up. Now our challenge is to keep him from eating so much!
Sunday, August 7th, 2011 3:40 PM
Dear Friends --
I am not even sure where to start – there have been so many ups and downs since I last wrote. It’s been a tough month – not that we don’t expect challenges, but a few extra ones have been thrown at us lately. First of all, back at the beginning of July, Jack complained that one of his chemo drugs was not letting him sleep. He only has to take it once a week, but when he does, he sleeps about 2 hours a night for the next three days. As a remedy, the docs decided to do a “phase down,” giving him a double dose phased over three days. Well… that didn’t end up helping him sleep, and made things much worse. He started retaining fluids and gained almost 25 pounds in a week. My poor guy looked like a giant version of the Pillsbury Dough Boy; his legs were so swollen that he could not even bend his legs at the knee – and it was painful. We drove to MD Anderson Cancer Center for some lab work and they put him in a diuretic to relieve the fluids.
That helped a lot but after a week, only half of the 25 pounds were gone, so they recommended continuing the diuretics. These drugs tend to decrease potassium in the body -- which they did in Jack -- so they put him on potassium, lest his heart beat become irregular. At the next appointment, the docs noted that Jack was skipping heartbeats… so off he went to the cardiologist for an electrocardiogram and an echocardiogram. They concluded that his heart was not in stress and are keeping him on potassium for now. In the meantime, his fluid retention increased again, despite the diuretic. Based on the fact that Jack was retaining fluid, had some significant issues with balance, double vision, and weakness, and that his July 24 cancer marker test showed that one of his more significant markers (Benz-Jones) had quintupled – and a specific protein (albumen) had dropped in half, the docs concluded that it was very likely that his cancer was migrating into his fatty tissues and that his chemo was not working well - I wasn't prepared to hear that, to say the least.
Okay – so now what? The oncologists scheduled a tissue biopsy, another heart test, a retest of his cancer markers, and probably more that I don’t even remember at this point – stress just kills my ability to recall much, so I keep meticulous notes, which come in handy when the docs ask things like, “when did you last…?” Early this past week, we went in for the biopsy and the next day Jack had an appointment with the oncologist. Dr. Weber is the greatest – we are so fortunate to be so close to MD Anderson – and to have such a great team of their doctors (17 and counting…). The biopsy results were not in, but given how bad off Jack was – and given that his albumen protein had dropped more, Dr. Weber decided to pull Jack off all chemo for two weeks. She said that his primary marker (Benz-Jones) was stable (yes – the quintupling appeared to have been an anomaly – probably caused by a technician’s premature release of the number…), and she felt Jack’s body needed a break so that he could stabilize himself and lose more fluids. She also said they would let us know the results of the tissue biopsy when they came in on Thursday.
So Thursday, Jack got “the call.” Yay – the biopsy was negative. And the nurse confirmed that Jack’s cancer markers had not increased. Phew – what a relief for us! I don’t think that Jack really realized how good this news was – on both the biopsy and the marker counts. This month has been a big reminder that God is always beside us, giving us strength through everything.
Jack remains extremely weak. We drove down to the beach house yesterday and seeing him struggle to get up the stairs was rough - he had to rest after every 3-4 steps, to catch his breath. He is still retaining fluids – but we’re working on cutting out salt and increasing protein intake. Hopefully the next 10 days, with no chemo, will pay off with Jack feeling better.
Again, thank you, everyone, for your continued prayers and help. Special thanks go to Mark S who drove us up to MD Anderson several times in the past 2 weeks and pushed Jack in the wheelchair – my back had nearly given out on me, so his help was most appreciated. We couldn’t get through some of these days and months without ALL of you. I also wanted to thank those of you who have added Caring Bridge notes or sent emails to Jack; he appreciates all of your kind words and thoughts.
Hugs and kisses to everyone -- we're hanging in there, a day at a time.
Sue and Jack
