It seems hard to believe that nearly two weeks have gone by since I last made an entry to this blog! The first week of those two weeks was lovely with only two medical appointments to get to & both were scheduled on the same day, so we had lots of time to be home & heal from the physical & mental fatigue that have occurred over the past two months. It was wonderful to witness David's energy level & appetite improve with glimmers of his former self shining through! Most mornings would find us out walking our neighborhood loop with David gradually building his endurance back up to be able to walk two miles without a break -- quite a feat considering he is carrying on his thin frame a fanny pack with his IV pump & his ever present cholecystostomy bag that is draining his gallbladder.
This past week has been busy with lots of medical appointments & once again, the pace & frustrations that go with these appointments have taken their toll on our energy level & patience! Let's break them down.
On Monday, David had another paracentesis performed (a procedure to remove fluid from his abdomen) with two-and-a-half liters of fluid removed. No one is entirely sure why David continues to develop ascites (fluid in his abdomen) as well as accumulate fluid in his feet, ankles, & lower legs. One reason could be because his albumin is low. Albumin circulates in your bloodstream & acts like a sponge to soak up excess fluids. It is produced by your liver & also absorbed from your gut by the proteins eaten. Because David's liver has taken such an insult from his recent infections & because he doesn't absorb that many nutrients or proteins from the food he eats (even though he eats plenty of protein) due to the rapid transit of all he eats through his intestines, these are certainly reasons for David's albumin to be low. So, today he received the first of three IV albumin infusions (he'll get the second dose on Monday & the third dose on Wednesday). If we find that these infusions help to keep him from filling up with fluids & needing to have a paracentesis done on a regular basis, then great. If the albumin infusions don't help, then we won't waste any more time with them.
Yesterday, David had his cholecystostomy tube checked with the interventional radiology department. They inject a dye into the tube & using fluoroscopy (a motion picture x-ray machine), they watch the dye enter into the gallbladder, move through the biliary tree, & finally dump into the duodenum. Unfortunately, David's tube was blocked by infected appearing material, so the entire thing had to be replaced. We were disappointed by this news as we were hoping there wouldn't still be signs of infection in his gallbladder / biliary tree after three weeks of IV antibiotics -- arg!!! But, the infected material was sent off for culture & sensitivity, so we'll see what that shows & if there might be a better antibiotic for David to be on than the Zosyn he is currently receiving.
We also had an appointment this week to meet with a clinical psychologist -- part of the palliative care team evaluation. This initial meeting was very freeform & neither David or I feel a need to continue with this service. While our situation is definitely challenging & we often find ourselves feeling sad, overwhelmed, frustrated, angry, & scared, we don't see a big benefit in just discussing these feelings without some strategies we can employ for better coping with them. So, we don't have a follow-up appointment with the psychologist & I am doubtful that we will make another appointment.
Also on Monday, we met with our first Hospice service to interview, which was emotionally taxing & scary. We are hoping we won't need hospice services for many months, but we decided to start interviewing now so we can make an informed decision when the time comes instead of making a decision in a crisis mode. We will only be able to handle one of these interviews a week, so we're done with that for this week!
And, of course, we had our regular weekly appointment with Dr. Fanta (David's oncologist) as well as the weekly blood draw & Huber needle change (this is the needle that is in David's chemo port that we are using to deliver his IV antibiotics -- it has to be changed every week).
So, that's what we have been up to the last couple of weeks. Hope you have had some sightings of Spring recently & are getting your fill of college & professional basketball. Thanks for continuing to follow our journey via this blog & thank you for your continued comments, texts, emails, & phone calls -- we appreciate them all!!
Hugs, Janet
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