January 12, 2011
Tucson is my home, my community. And while the shooting that occurred on Saturday did not involve me or anyone I know directly, the degrees of separation are few in this little big city. The sadness is palpable as we all go about our daily routines.
The trauma of it all has caused old traumas to resurface, not just for me, but for many of us. For me personally, UMC, the hospital where the shooting victims went, was the hospital where I lost my daughter and my colon. I think of Gabby Giffords and the others, picture them there, hear references to the hospital all day long, and my body almost immediately tightens, every muscle freezing in some sort of deep, primal remembering.
I try to fathom the healing journey the survivors have ahead of them, not just physically, but mentally and emotionally and I cry out to God, Please give them the strength and courage to heal God. Please. Don't let them be discouraged.
I wish I were a better person and could say that my own troubles and worries have fallen by the wayside as the weekend's events put my situation in perspective. But I'm not a better person. My already burdened mind is ever so slowly slipping down the muddy slope of discouragement. But here's the key! I know that's what's happening. I'm getting discouraged and I know it. And I'll be damned if I'm going to be discouraged right now. There's just no room for discouragement right now. None.
Jeremy, as you undoubtedly know, is a musician. The man inhales and exhales music. And while we don't necessarily have the same taste in what we listen to, he knows what I like. He knows what I don't like. He knows what I love. He knows what moves me. His knowledge did not fail him this morning either.
"I picked up the newest Daniel Lanois yesterday. You've gotta hear this song. You're gonna like it," he said as he popped the disc into the player. The music started and I was digging the beat. The first verse, Yeah, okay, I really like this, and then the chorus started and it socked the breath out of me. A wall of voices, crying out in song: "How far am I from Canaan? How far am I from joy, from joy? How far am I from Canaan? How far am I from joy, from joy?"
I was overwhelmed and started crying. "Oh sweetie," he said as he came to sit beside me and held my head against his shoulder, "I knew you'd like it."
I've listened to that song on repeat all day. You can be in Canaan right now Abby. You just have to choose it. With every tragedy that has befallen you, you have been touched by just as much goodness, grace and love. Don't just see the tragedy Abby. See the goodness. See the grace. Feel the love. And so that's the choice I'm making today. That's the choice I'm making right now. To see the beautiful things we do to support and love each other in times of need. To see the courage we give to one another. To see the faith and hope we inspire in one another. That's what I'm choosing.
Canaan is right there in front of you.
Wednesday, January 12, 2011
Friday, January 7, 2011
Now we wait
January 7, 2011
"So you're ready for the revision surgery Abby?" Dr. T asked. "I'm not going to lie to you, it's going to be difficult. It's an extremely complicated surgery. I would like you to go to the Mayo Clinic in Rochester to have it done. What you need is a team that can follow you for life, because you are going to need lifelong care, and none of those doctors are going anywhere. If you were my sister, that's where I would want you to go." She went on to describe that Mayo has diagnostic equipment that she doesn't have access to here. She told me about the specific surgeon she wanted me to see and said she had already consulted with him about my case and that she would be calling him again this weekend to talk more. She told me the name of one of the world's leading doctors on pouchitis (which I have had) who is at the Mayo. She said they have an excellent GI team and a whole team of ostomy nurses who know their stuff. They have done more j-pouch surgeries than anywhere else. She did her residency there and knows the teams personally which is a bonus.
Relief at her level of concern for me brought me to tears and I sobbed, "Thank you." We talked about the possible complications, incontinence being one of the scarier ones for me. We talked about the possibility of ending up with a permanent ostomy and how one of the surgeons at Mayo would probably try to convince me to choose that route without even trying the revision surgery. "Of course I don't want to end up with a permanent ostomy, but if it happens, I'm prepared for it. People live healthy, active lives with ostomies. I just want to be healthy," I said. She said that was a good place to be mentally going into the surgery.
Mayo is out of network for my insurance. Dr. T said she didn't think she would have any problems getting approval for it though. "I'd be surprised if I even had to talk to your insurance company," she said as she wrote on the referral form Extremely complicated surgery. Refer to Mayo Clinic.
Dr. T told me Mayo would call me with an appointment time. At that appointment I would meet with the surgeon. They would do some tests (probably a pouchogram) that day and then most likely would do the surgery the very next day. For sure they will remove the remainder of my rectum. Whatever other revisions they do or if they need to make a whole new pouch will be determined upon the results of the tests they do. She said typically people are hospitalized for five to seven days after the surgery, but it may be a little longer for me. I was hospitalized for 13 days after my original j-pouch was created as I had a few complications. She said they like you to stay around the area for a while before flying back home after the surgery too, though I wasn't completely sure what that timeline would look like and I'm sure will depend on how I'm feeling and if there are complications or not.
I will have a temporary/diverted ostomy after the surgery so the area can heal. I asked if the quality of my temporary ostomy would be better because I had so many problems with the previous one. She practically scoffed when she told me it would be better quality. After about three months, if all goes well, the ostomy can be taken down. She said she could do the takedown surgery for me, but she would prefer I have the same surgeon do it so that I have that continuity of care. She said she would want me to have my annual scoping done at the Mayo too.
She spent plenty of time talking about the possible complications. "You understand the rectal sphincter is going to be traumatized again, which compromises it?" Yes. I told her I understood. I showed her the research articles I had read. She seemed to get excited as she looked at the articles because she personally knew the surgeons who had written one of them.
She asked us about plans to get pregnant. We told her we had none. She said chances of getting pregnant the old-fashioned way decrease with each surgery. She said she would want me to talk with a fertility specialist anyway while we were at Mayo.
After talking about all the risks, Dr. T told me the surgeon she wants me to see would be much more optimistic about things. All that being said, she said she was glad I'm doing this and thinks it's a good choice.
I'm still processing everything we talked about. But I'm ready. And so now we wait to hear from the Mayo.
"So you're ready for the revision surgery Abby?" Dr. T asked. "I'm not going to lie to you, it's going to be difficult. It's an extremely complicated surgery. I would like you to go to the Mayo Clinic in Rochester to have it done. What you need is a team that can follow you for life, because you are going to need lifelong care, and none of those doctors are going anywhere. If you were my sister, that's where I would want you to go." She went on to describe that Mayo has diagnostic equipment that she doesn't have access to here. She told me about the specific surgeon she wanted me to see and said she had already consulted with him about my case and that she would be calling him again this weekend to talk more. She told me the name of one of the world's leading doctors on pouchitis (which I have had) who is at the Mayo. She said they have an excellent GI team and a whole team of ostomy nurses who know their stuff. They have done more j-pouch surgeries than anywhere else. She did her residency there and knows the teams personally which is a bonus.
Relief at her level of concern for me brought me to tears and I sobbed, "Thank you." We talked about the possible complications, incontinence being one of the scarier ones for me. We talked about the possibility of ending up with a permanent ostomy and how one of the surgeons at Mayo would probably try to convince me to choose that route without even trying the revision surgery. "Of course I don't want to end up with a permanent ostomy, but if it happens, I'm prepared for it. People live healthy, active lives with ostomies. I just want to be healthy," I said. She said that was a good place to be mentally going into the surgery.
Mayo is out of network for my insurance. Dr. T said she didn't think she would have any problems getting approval for it though. "I'd be surprised if I even had to talk to your insurance company," she said as she wrote on the referral form Extremely complicated surgery. Refer to Mayo Clinic.
Dr. T told me Mayo would call me with an appointment time. At that appointment I would meet with the surgeon. They would do some tests (probably a pouchogram) that day and then most likely would do the surgery the very next day. For sure they will remove the remainder of my rectum. Whatever other revisions they do or if they need to make a whole new pouch will be determined upon the results of the tests they do. She said typically people are hospitalized for five to seven days after the surgery, but it may be a little longer for me. I was hospitalized for 13 days after my original j-pouch was created as I had a few complications. She said they like you to stay around the area for a while before flying back home after the surgery too, though I wasn't completely sure what that timeline would look like and I'm sure will depend on how I'm feeling and if there are complications or not.
I will have a temporary/diverted ostomy after the surgery so the area can heal. I asked if the quality of my temporary ostomy would be better because I had so many problems with the previous one. She practically scoffed when she told me it would be better quality. After about three months, if all goes well, the ostomy can be taken down. She said she could do the takedown surgery for me, but she would prefer I have the same surgeon do it so that I have that continuity of care. She said she would want me to have my annual scoping done at the Mayo too.
She spent plenty of time talking about the possible complications. "You understand the rectal sphincter is going to be traumatized again, which compromises it?" Yes. I told her I understood. I showed her the research articles I had read. She seemed to get excited as she looked at the articles because she personally knew the surgeons who had written one of them.
She asked us about plans to get pregnant. We told her we had none. She said chances of getting pregnant the old-fashioned way decrease with each surgery. She said she would want me to talk with a fertility specialist anyway while we were at Mayo.
After talking about all the risks, Dr. T told me the surgeon she wants me to see would be much more optimistic about things. All that being said, she said she was glad I'm doing this and thinks it's a good choice.
I'm still processing everything we talked about. But I'm ready. And so now we wait to hear from the Mayo.
Wednesday, January 5, 2011
Here we go!
January 5, 2011
I’ve been reading. Trying to educate myself for my appointment with Dr. T today. Articles like Ileal Pouch-Anal Anastomosis: Reoperation for Pouch-related Complications and Reconstruction for Chronic Dysfunction of Ileoanal Pouches. I feel like I have a good grasp on the complications that can occur (and there are many) and on what the chances of improving my quality of life with this revision surgery are. Each article mentioned that no one in their research died from resulting complications. Okay. That’s good. I’m not risking my life here . . . just my quality of life.
I had an emotional reaction when I read about the average improvements in frequency of bowel movements after revision/reconstruction surgery (both daytime and nighttime improvements in frequency). I also realized that I have more symptoms that are not what is expected after having a j-pouch surgery than just rectal pain. Please understand, I have never expected my life to be what it was before UC. Never. But there has been plenty of research describing what life for the average j-poucher is. So it's been hard for me to know what is just something I should live with and what is something that can improve. From reading these articles though, I’m hopeful that my functioning will improve in more ways than just not being in pain any more, not to mention the UC will be completely removed from my body. That thought is actually exciting to me. And I realized too that I am the only person who can decide what I am willing to risk to improve my quality of life. I'm the only one living in this body. I am not satisfied with my quality of life right now.
So I feel confident going into this appointment that I will ask educated questions and hopefully my emotions will be under control enough that I can actually hear and understand what Dr. T is telling me. I’m glad Jeremy will be there for that reason too. It’s always good to have an extra pair of ears at these appointments. I can’t tell you how many times we’ve debriefed only to find one or the other of us had picked up on significant information that the other missed. It’s good to have a life-partner who is so willing to be there in that way. I’m a blessed woman. So here we go!
I’ve been reading. Trying to educate myself for my appointment with Dr. T today. Articles like Ileal Pouch-Anal Anastomosis: Reoperation for Pouch-related Complications and Reconstruction for Chronic Dysfunction of Ileoanal Pouches. I feel like I have a good grasp on the complications that can occur (and there are many) and on what the chances of improving my quality of life with this revision surgery are. Each article mentioned that no one in their research died from resulting complications. Okay. That’s good. I’m not risking my life here . . . just my quality of life.
I had an emotional reaction when I read about the average improvements in frequency of bowel movements after revision/reconstruction surgery (both daytime and nighttime improvements in frequency). I also realized that I have more symptoms that are not what is expected after having a j-pouch surgery than just rectal pain. Please understand, I have never expected my life to be what it was before UC. Never. But there has been plenty of research describing what life for the average j-poucher is. So it's been hard for me to know what is just something I should live with and what is something that can improve. From reading these articles though, I’m hopeful that my functioning will improve in more ways than just not being in pain any more, not to mention the UC will be completely removed from my body. That thought is actually exciting to me. And I realized too that I am the only person who can decide what I am willing to risk to improve my quality of life. I'm the only one living in this body. I am not satisfied with my quality of life right now.
So I feel confident going into this appointment that I will ask educated questions and hopefully my emotions will be under control enough that I can actually hear and understand what Dr. T is telling me. I’m glad Jeremy will be there for that reason too. It’s always good to have an extra pair of ears at these appointments. I can’t tell you how many times we’ve debriefed only to find one or the other of us had picked up on significant information that the other missed. It’s good to have a life-partner who is so willing to be there in that way. I’m a blessed woman. So here we go!
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