Yes, I did opt for the pro active approach, meaning that I may not have been in imminent danger from the bad lymph node in my abdomen, but I chose to do something about it anyway. And what an ordeal it has been. Even toward the end I was still wondering if it had all been worth it. Should I have chosen instead to let nature take its course and see if my olive size lymphatic tumor would metastasize into an attack of all my internal organs? As it is, I have no absolute knowledge of how well the procedure worked. Is the cancerous tumor still there after all I’ve been through—the awful BCNU or Carmustine, bad kidney reaction, etc.—or not?
Walking Problems
At this writing, I’ve been home for two weeks, and I’m starting to see genuine recovery. I’m still walking a bit like Frankenstein’s monster, but at least a cane is required only when I’m on rough terrain outside. I’m still suffering from mouth sores, a chemotherapy byproduct, which can make eating a chore and contribute to the fact that many foods I used to like taste awful, and my energy level varies and is often below par. In addition, I’m functioning at about 10 degrees colder than anyone else. It’s summer time here in the mountains, and while everyone else is feeling just right or maybe too warm, I’ve been cold most of the time. It’s 85 degrees outside, and I’m the one wearing the sweat shirt.
On the other hand, my white blood count is now in the normal range, and I’m hoping my other major blood components—hemoglobin and platelets—will soon start to rise as well. Also my kidney function has returned to normal. The reader will remember that kidney malfunction was the unpleasant complication that forced an extended hospital stay of over a week. It also was the principal cause of my legs and feet ballooning out from 15 pounds and more of water weight and causing me walking complications from which I am only starting to recover.
Extra Eight Days
As it was, I ended up being a resident of Room 909 North at Wake Forest University Baptist Hospital from July 1 to July 29—29 days. A time span of 21 days had been the most optimistic prediction for the length of time of my transplant. I went eight days over that estimate.
Some friends ask me to compare my experience at Baptist with my experience at Johns Hopkins where I had my first transplant in 2002. The quick answer is that any comparison is unfair since I would be attempting to compare practices at one institution six years ago with practices today. A friend of mine in high school named Parker Reis had a favorite expression which he repeated all the time, “Comparisons are odious.” Yes, comparisons are odious and sometimes they are not fair, but we love them just the same.
Record Keeping and Sharing
Hopkins, for example, had a focus of accommodating the needs of the out-of-town patient and family whereas this is not a high priority with Baptist which serves more of a local population. However, since Harriet and I live an hour and a half away from Baptist we would have appreciated more help with respect to our distance needs.
Then there is the question of record keeping and record sharing. On this issue, Baptist shows a clear advantage. Baptist buries you in paper. Is this because we now enjoy the benefit of 2008 computer technology versus the computer technology of 2002? Could be, but Hopkins was definitely not noteworthy in 2002 for the availability of information on what was going on with me and making that information available to me.
Baptist uses a team approach with respect to the physicians and senior nurses (physician assistants and nurse practitioners) following your case. This means that there is almost always more than one person who can talk to you about what is going on with you and the decisions being made about you.
Baptist And Catheter Care
I am also quite impressed with the way Baptist does its catheter care. At Hopkins, my Hickman catheter became infected and had to be removed in the middle of my Hopkins transplant, a very traumatic experience that included a near death experience in the middle of one very bad night. Under the care of the Baptist staff, my Hickman functioned perfectly right up to its removal by the same people who put it in in the Radiology Department.
One reason, maybe the main reason, that I had no trouble with my Hickman this time around has to do, I believe, with the existence of a Catheter Care team at Baptist. These are specially trained nurses who do nothing but look after the catheters that have been placed in patients including drawing blood from them throughout the patient’s stay.
Okay, that’s my comparison. As my wife keeps reminding me, maybe Johns Hopkins wasn’t perfect, but I got five years of remission out of the bone marrow transplant that Hopkins performed on me. How much remission time am I going to get from the bone marrow transplant from Wake Forest University Baptist Hospital?
True, that’s the ultimate comparison. Thanks for tuning into Mind Check and thanks for putting up with the spotty postings over the last two months. Now that I am on the road to recovery, I will make every effort to return to a more frequent posting schedule. To see an overview of my career as a writer including information on my new book, Murdoch McLoon And His Windmill Boat, see the website http://www.sasaftwrites.com.
Copyright © 2008 by Stephen Alan Saft
No comments:
Post a Comment