Wow..what a long 24 hours this has been. I am so glad that I have decided to keep a private blog because truthfully, I don't need everything being shared to the public, especially in regards to my sister.
Wednesday was my sister's scheduled scope. The doctors were wanting this done to prepare them for surgery so that they had a better idea of what they were facing on the actual surgery date. Unfortunately, my sister did not get cleared out at all from the prep, and they had to use enemas to get her cleared. Then, once they were in, they could not get past the tumor. At the initial diagnostic scope, they noted that the tumor was almost blocking the large intestine. Whether the tumor has grown or whether this was due to a bowel blockage and inflammation, we are unsure. According to the surgeon, the current tumor measures about 5 cm, but since I am unsure of the previous size I do not know if this is progress or not.
My heart sank a bit when I found out this information, but since the doctor stated that the June 12 surgery was still on, I took it as overall positive. Then, recovery started...
As is standard in any surgery or procedure, during recovery the nurses are hoping for a stool to pass or at least gas. Unfortunately, my sister was unable to pass anything. It was soon determined that she was facing something many CFers face multiple times: a bowel blockage. The fear started almost immediately when hearing this, and I found myself in prayer the majority of the night. The doctors stated that if Ellen did not start passing gas/stool, she would be taken in for emergency surgery to remove the blockage. Obviously the words "emergency" and "surgery" do not ease minds when they are stated, and my entire family sat on edge for twelve hours...waiting...and waiting..and waiting.
My sister was surrounded by family, but I was unable to go up there. Due to the chemo, Ellen is in reverse isolation which means they really don't want this MRSA, P.A. culturing cyster to be up there. Truthfully, not being there to hold her hand and tell her I was there was the hardest thing I've done recently. I struggled to keep it together as I awaited news from my parents because the only way I was able to go up was if she was having to go through emergency surgery. Even then, I wouldn't have been able to see her, but I could be there with my family.
The night dragged on as observation continued, and the news stayed the same. I finally fell asleep and got a few broken hours of rest before waking up Thursday morning. Immediately, I was on the phone with my parents who told me that she had gone to the bathroom a tiny amount, and her belly was less bloated and no longer hard. I could have screamed with happiness. Truthfully. Thankfully, emergency surgery was avoided, and we could breathe a bit easier. Then, the surgeons came in and gave my sister a LOT of hard choices.
Basically, the fact that her bowel has had a blockage is not good news because a repeat occurrence before June 12 is quite likely. The surgeon explained all the various ways they could handle this situation (for lack of memory and for brevity, I will only explain the one she chose), and my sister was left to make the difficult decision of what she felt was best. She chose to have the G.I. surgeons go in and put a stent in the bowel. This stent would open the bowel up so that the likelihood of a blockage happening again would be greatly reduced. Worst case is that the stent gets dislodged and a blockage does happen, in which case we are no worse off than we were Wednesday evening. Best case scenario is that this stent gets her through til June 12 so that the surgery can happen. If she ends up with a blockage and has to have emergency surgery, she will have to wait ~6 weeks for the liver surgery and then another ~6 weeks for chemo to start. This, to us, is not a good solution as Ellen needs chemo to kill off all the cancer cells. Therefore, choosing to go through surgery for the stent seemed to be a smart decision to Ellen.
The next decision she made was that following the colon/liver surgery on June 12, she will have an ileostomy. This will be able to reversed 6 - 12 months later following the chemo. The reason for this decision is because there is a 10% chance of leaking after the intestine is fused back together. If leakage happens it can be months before chemo can start, and again this is not a good solution to us. Therefore, Ellen chose to minimize the risk by opting for the ileostomy. I truly am so proud of her as I know it's not the decision she wanted, but as she told me on the phone, "I can live with an ileostomy for 6-12 months if it means I get to live." She is truly my hero...
The stent was put in yesterday evening while I was at work (talk about a rough few hours), and it went well without any complications. She is now recovering at Northwestern Memorial where they will do an X-ray this morning to check that the stent has stayed in place. If everything looks good, she will be released to go home. I'm just so grateful that my sister is alive and doing well. I truly am blessed to have her, and I can't imagine the world without her smiling face and her indomitable will. Although it has been a SUPER stressful 24 hours, the outcome has been so very happy, and we couldn't be more grateful.
Wednesday was my sister's scheduled scope. The doctors were wanting this done to prepare them for surgery so that they had a better idea of what they were facing on the actual surgery date. Unfortunately, my sister did not get cleared out at all from the prep, and they had to use enemas to get her cleared. Then, once they were in, they could not get past the tumor. At the initial diagnostic scope, they noted that the tumor was almost blocking the large intestine. Whether the tumor has grown or whether this was due to a bowel blockage and inflammation, we are unsure. According to the surgeon, the current tumor measures about 5 cm, but since I am unsure of the previous size I do not know if this is progress or not.
My heart sank a bit when I found out this information, but since the doctor stated that the June 12 surgery was still on, I took it as overall positive. Then, recovery started...
As is standard in any surgery or procedure, during recovery the nurses are hoping for a stool to pass or at least gas. Unfortunately, my sister was unable to pass anything. It was soon determined that she was facing something many CFers face multiple times: a bowel blockage. The fear started almost immediately when hearing this, and I found myself in prayer the majority of the night. The doctors stated that if Ellen did not start passing gas/stool, she would be taken in for emergency surgery to remove the blockage. Obviously the words "emergency" and "surgery" do not ease minds when they are stated, and my entire family sat on edge for twelve hours...waiting...and waiting..and waiting.
My sister was surrounded by family, but I was unable to go up there. Due to the chemo, Ellen is in reverse isolation which means they really don't want this MRSA, P.A. culturing cyster to be up there. Truthfully, not being there to hold her hand and tell her I was there was the hardest thing I've done recently. I struggled to keep it together as I awaited news from my parents because the only way I was able to go up was if she was having to go through emergency surgery. Even then, I wouldn't have been able to see her, but I could be there with my family.
The night dragged on as observation continued, and the news stayed the same. I finally fell asleep and got a few broken hours of rest before waking up Thursday morning. Immediately, I was on the phone with my parents who told me that she had gone to the bathroom a tiny amount, and her belly was less bloated and no longer hard. I could have screamed with happiness. Truthfully. Thankfully, emergency surgery was avoided, and we could breathe a bit easier. Then, the surgeons came in and gave my sister a LOT of hard choices.
Basically, the fact that her bowel has had a blockage is not good news because a repeat occurrence before June 12 is quite likely. The surgeon explained all the various ways they could handle this situation (for lack of memory and for brevity, I will only explain the one she chose), and my sister was left to make the difficult decision of what she felt was best. She chose to have the G.I. surgeons go in and put a stent in the bowel. This stent would open the bowel up so that the likelihood of a blockage happening again would be greatly reduced. Worst case is that the stent gets dislodged and a blockage does happen, in which case we are no worse off than we were Wednesday evening. Best case scenario is that this stent gets her through til June 12 so that the surgery can happen. If she ends up with a blockage and has to have emergency surgery, she will have to wait ~6 weeks for the liver surgery and then another ~6 weeks for chemo to start. This, to us, is not a good solution as Ellen needs chemo to kill off all the cancer cells. Therefore, choosing to go through surgery for the stent seemed to be a smart decision to Ellen.
The next decision she made was that following the colon/liver surgery on June 12, she will have an ileostomy. This will be able to reversed 6 - 12 months later following the chemo. The reason for this decision is because there is a 10% chance of leaking after the intestine is fused back together. If leakage happens it can be months before chemo can start, and again this is not a good solution to us. Therefore, Ellen chose to minimize the risk by opting for the ileostomy. I truly am so proud of her as I know it's not the decision she wanted, but as she told me on the phone, "I can live with an ileostomy for 6-12 months if it means I get to live." She is truly my hero...
The stent was put in yesterday evening while I was at work (talk about a rough few hours), and it went well without any complications. She is now recovering at Northwestern Memorial where they will do an X-ray this morning to check that the stent has stayed in place. If everything looks good, she will be released to go home. I'm just so grateful that my sister is alive and doing well. I truly am blessed to have her, and I can't imagine the world without her smiling face and her indomitable will. Although it has been a SUPER stressful 24 hours, the outcome has been so very happy, and we couldn't be more grateful.
Oh man. My heart has just been hurting for you guys all week as I've read your updates. Bowel blockages are some of the most painful things on the planet, I am convinced! I'm glad that it is going a little better for now and I'll be praying that the stent holds up til the 12th. I agree that your sister is super brave - an ostomy of any kind is my worst nightmare! (I am afraid I have a very high risk of colon cancer or colon resection at some point down the road due to my extremely bad CF gut complications....)
ReplyDeleteOh Megan! I can't imagine how hard this is on you and your family. Your sister is so brave, but I know it also takes a lot of bravery to be on the other side and worried about someone you love who is sick as well.
ReplyDeleteWhen my sister was in the regular hospital (not the icu) I wasn't allowed in due to my germs and possibly catching bugs since several rooms had warnings of MRSA and various other bugs. It is the worst sort of torture to not be able to be by your loved ones side. It was the one time I hated this disease! I am so sorry you can't cuddle up with your sister and be by her side.
I hope the rest of her recovery goes well and you all are given the strength to get through this. Hugs!