Saturday, December 05, 2009
The Wound Rules
The wound created last summer when the tumor imploded is what rules Mark's life now. It schedules our lives for us, dictating what we will do every day. Mark did make it to Caitlin Terry's wedding but the wound angrily screamed the entire time. Soon after that, a culture indicated an infection in the wound and Mark was whisked off to the hospital for a few days followed by the first of several 21 day IV antibiotic treatments at the doctor's treatment room. We've been to one doctor or another almost every day since mid-August. Mark finally got a PIC line put in because it was taking a half hour to find a vein. He's been hydrated most of the time and even got over hydrated at one point. Since August his weight has boomeranged to a high of 167 and a low of 147. It's back in the middle range again.
Mark turned 61 on Nov. 8 and Gary, Kristina, Sean and Mike came to watch a football game with him. It fit his wants and needs perfectly. Gary got us tickets to a Bob Dylan concert and although it was a struggle we made it. Mark takes different types of drugs now than when he was originally a Dylan fan! He has several pain patches and takes strong pain pills day and night. They dull the pain and soothe his fear of my driving while I'm chauffeuring him to doctors.
We had a nice Thanksgiving at our house. Kevin came home and will be back at Christmas. Mike and Steph had Thanksgiving with Steph's family but we will all be together for Christmas. Everyone was enthralled by Sean on Thanksgiving. He can pull himself up now, has a few teeth, waves bye-bye and is the happiest baby I've ever seen. He'll be one on Dec. 23 and is still the most beautiful baby you ever saw, inevitably people comment that he should be the Gerber baby model.
On Monday, November 30, Mark had day surgery in an attempt to clean out the wound but his arm and shoulder are so frozen that the doctor couldn't ply it open so there was limited success but tinkered with enough to throw Mark into more pain than ever. The oncologist doesn't want to continue chemo right now because it will knock Mark down further when he's in such bad shape physically and mentally. The latest scan showed a bit more tumor activity but still nothing in his vital organs so that is promising.
This week some limited Hospice services have been added in hopes that their nurses can monitor Mark's pain and come up with a solution. He is also going to a doctor who specializes in infection next week because the wound is infected again.
Basically, Mark's year has sucked! If it wasn't lymphadema, it was chemo, one infection after another and daily wound care. He has been in constant pain for more than a year now. The past six months of pain and treatments have really zapped his energy and spirit. He is unwilling to visit with or speak on the phone to anyone other than our kids. We ask you to respect his wishes and communicate with me (Nancy) through e-mail. I will make sure he hears your message. sheehan@cape.com
As always thank you for caring. We have so many friends and relatives who offer help and want to do something but honestly there really is nothing we need except your understanding.
Mark turned 61 on Nov. 8 and Gary, Kristina, Sean and Mike came to watch a football game with him. It fit his wants and needs perfectly. Gary got us tickets to a Bob Dylan concert and although it was a struggle we made it. Mark takes different types of drugs now than when he was originally a Dylan fan! He has several pain patches and takes strong pain pills day and night. They dull the pain and soothe his fear of my driving while I'm chauffeuring him to doctors.
We had a nice Thanksgiving at our house. Kevin came home and will be back at Christmas. Mike and Steph had Thanksgiving with Steph's family but we will all be together for Christmas. Everyone was enthralled by Sean on Thanksgiving. He can pull himself up now, has a few teeth, waves bye-bye and is the happiest baby I've ever seen. He'll be one on Dec. 23 and is still the most beautiful baby you ever saw, inevitably people comment that he should be the Gerber baby model.
On Monday, November 30, Mark had day surgery in an attempt to clean out the wound but his arm and shoulder are so frozen that the doctor couldn't ply it open so there was limited success but tinkered with enough to throw Mark into more pain than ever. The oncologist doesn't want to continue chemo right now because it will knock Mark down further when he's in such bad shape physically and mentally. The latest scan showed a bit more tumor activity but still nothing in his vital organs so that is promising.
This week some limited Hospice services have been added in hopes that their nurses can monitor Mark's pain and come up with a solution. He is also going to a doctor who specializes in infection next week because the wound is infected again.
Basically, Mark's year has sucked! If it wasn't lymphadema, it was chemo, one infection after another and daily wound care. He has been in constant pain for more than a year now. The past six months of pain and treatments have really zapped his energy and spirit. He is unwilling to visit with or speak on the phone to anyone other than our kids. We ask you to respect his wishes and communicate with me (Nancy) through e-mail. I will make sure he hears your message. sheehan@cape.com
As always thank you for caring. We have so many friends and relatives who offer help and want to do something but honestly there really is nothing we need except your understanding.
