Lately, it feels as if Jack and I have been living in a strange, parallel universe where nothing is real - least of all is the passage of time. After spending 12 days in the hospital in a contact isolation room, days slip into nights without distinction, nothing seems familiar anymore but at the same time, things seem oddly familiar, and I feel like I continually have to choke my brain back into reality. The last journal entry I made, Jack was on the cusp of being released from MD Anderson Cancer Center Hospital, having recovered from both pneumonia and a viral influenza. His blood counts had risen and put him in good stead for release. Unfortunately, his recovery was not as complete as everyone thought. On Monday, Jack's doctor gave him the disappointing news: he needed to spend a few more days in the hospital because he was not absorbing enough oxygen into his blood and his cough was worsening. Now, almost a week later, Jack remains in the hospital with a persistent croupy cough and the same issue with oxygen. Yesterday, Jack had two CT scans done (ouch, ouch - he cannot lie flat without pain!) that revealed he has a patchy pneumonia in his lungs. This afternoon, he had a bronchoscopy done - the docs pass a scope down into his lungs to see what is going on, and retrieve some of the mucus there. Once the docs determine more specifically what is causing his pneumonia, appropriate antibiotics can be administered to tackle the infection. All in all, except for the fact that we are both suffering from lack of sleep and exhaustion, Jack is feeling well -- he has lost height (5"), weight, hearing, and hair, but we can deal with those issues. This morning he had a battery of hearing tests done, in preparation for an appointment with an ear-nose-throat doctor who might be able to identify the cause of his hearing loss (the most likely culprit is a toxic reaction to the high dose antibiotics he had to have). When I say loss, I mean near-total hearing loss. We do not know if this is something that will return later -- we hope the doc can give him some good news on this count.
The docs are not saying when Jack will be released now - only that he will not be released until next week at the earliest. Fortunately, Jack is still feeling fairly good, and is starting to venture out of the room for a bit of exercise. That, in itself, is an exercise for us -- I have to wear isolation gear while IN the room with him; when I leave, I have to stuff it in a biohazard burn box, along with my mask. On the other hand, before Jack can exit the room for exercise, tests, procedures, or what-not, I have to dress him in isolation gear (isolation gown, mask, and sterile gloves). These go into the biohazard box when he comes back into the room. MD Anderson is fanatic (yay!) about controlling the passage of infections, particularly on this floor of the hospital, which has ONLY stem cell transplants patients who are all at tremendous risk for infection. Even the nurses who go in and out of our room day and night, have to get into/out of isolation gear every time they enter/depart.
There are again so many people to thank for so much -- praise goes to all the men and women of The Quilt Show who have made not one, not two, but THREE comfort quilts for us (the grandkids get their own!); the quilts mean so much to me, as does the support, watchfulness, and prayers of the TQS family members; along with the quilts, they sent tons of cards, letters, and well-wishes that saw me just sobbing to the point that I had to stop reading for a while. Praise also goes to Debbie S and Cynthia C for finishing a quilt that needs to go to Quilt Market next week - it was made with a new line of fabric that I designed but have not seen because of Jack's hospital stay; how absurd is that?! Praise goes to so many others of you who have called, written, emailed, and made journal entries. We love you all. Your prayers have meant so much to us in so many ways; we look forward to seeing you on the "other side." That has been my way of phrasing Jack's passage across the minefield -- but now it almost seems, given our isolation behind closed doors, that the "other side" refers to the other side of those closed doors. Jack still has a long way to go, and more battles to fight, but we've gotten this far by taking one day at a time. My friends, we hope that you will step through each day, enjoying what life brings you, and appreciating every rising sun.
Two more quick little items before I close. I was asked about donating blood. While Jack will not likely have a need in the near term, I talked to the folks at MD Anderson about donations. They are entering a season of critical blood shortages, where only mandatory surgeries are done due to the shortage of blood units. If you have the time, whether it be at MDA or another hospital, consider donating. Many of you have asked what you can do to help, and I have an answer: give blood. It takes 45 minutes (2 hours if you donate platelets - and that generally requires an appointment). If you live in the Clear Lake area, you can go to the MD Anderson satellite clinic in Nassau Bay and donate. It's easy -- one needle stick and the hard part is over, and you can give life to someone who desperately needs blood. Jack was in that position a couple weeks ago and I am forever indebted to a dozen or more anonymous donors.
Second - I have been asked if Jack is "cured" now that he is in remission. Sadly, the answer is no. His cancer is without cure, although there are some additional treatment options available when it returns. As I have said before, we look for silver lingins and take each day one at a time, and plan to live each one as fully as possible. Surely, someday, cures for this terrible disease, in all of its variations, will be discovered.
Blessings to you all --
Sue and Jack