Surgery day, Friday February 13th!
I don't remember much from this day, other than the morning time leading up to the surgery, and pockets throughout the afternoon/evening. Matthew and I got up at around 4, and I took a shower with this special soap that I had also had to wash with the night before. It was supposed to kill all the tiny things that always live on our bodies, to try to prevent infection when they started the surgery. It was weird and stinky! We headed out to the hospital and got there about 5:15am. We went straight to a little holding area, where I got my bed, gown and the fashionable compression socks I would wear the rest of my stay. We sat there for a while, until they were ready to take me back to anesthesia. They wheeled my bed upstairs and I got to give Matthew a final kiss before he had to go to the waiting room and I headed back to get prepped. My anesthesiologist was really nice, he did an epidural high on my spine, to numb my chest wall, and then did two IV's, one for meds and one that had a little heart monitoring device implanted inside, so they could keep an eye on my blood pressure without having to use a cuff. He had a little trouble getting that one in, so I was left a beautifully bruised abd sore wrist. Then they wheeled me in the surgical room, which was crazy...just like you see on TV! Big lights everywhere, tons of doctors and nurses getting scrubbed up and ready, table after table of instruments and tools. I was only awake in there for about 2 minutes before they knocked me out, and then it was off to lala land.
The next thing I remember was waking up with my shoulder on fire. They had me in this sling thing, moving me from the operating bed to another bed and they were also taking an xray of my chest. Thankfully the breathing tube had already been taken out, I had been a little worried about waking up with that still in. My shoulder was the only thing I could feel, and oh man...it hurt so bad. I thought it had been dislocated. I remember asking for pain medicine and Matthew, probably in that order. The rest of this time is a blur, I know Matthew came back, and I remember them giving me dose after dose of medicine, but nothing was working. They said that because my pain was already peaking, it was going to take a lot to get me back down to a comfortable place. I don't remember my chest or back hurting at all, just my arm. I remember that they let Matthew stay in there a really long time, it was supposed to be just 10 minutes, but he was in there for hours (or at least it felt like it). The only other thing I remember from that night was the horrible itchiness. I guess sometimes epidurals cause people to be really itchy and I had it bad. They gave me doses of Benadryl, and another kind of anti itch medicine injected into the skin of my stomach, but nothing helped. I had to stay in the critical care unit that night and I only got about 2 hours of sleep because I stayed awake most of the night itching uncontrollably, every part of my body that I could reach. I actually scratched my face so much that it was rubbed raw, and red and swollen the next morning :( I did remain relatively pain free that night, after they got enough pain medicine in to deaden my shoulder.
Saturday:
Much of this day is also a blur. I remember I woke up feeling pretty good, my arm was tolerable, the itching was still there, but I was dealing with it, and I was actually amazed at how good I was doing. I thought - I am going to breeze through this! I was soon to swallow those words! They moved me in the morning into a chair to sit in, and after a while I started noticing a cramping and burning in my chest. I was getting really uncomfortable, and kept calling for my nurse, but unfortunately, she was really really awful, and I waited two hours to get my pain meds. I was in tears by the time she came, and PISSED. Still, I thought it was just because I was late on the meds that I was so uncomfortable. Late morning, they moved me upstairs, and by this time, I was really hurting. Unlike the night before when I couldn't feel my chest, I was starting to feel more, and the pain was indescribable. Inside out, it felt like I was on fire, being crushed by heavy weights, and being ripped open, all at the same time. When I finally got upstairs, I was in so much pain. Matthew finally noticed the cause...where the epidural went into my spine, they was a huge bubble of fluid...the needle had come loose, and I wasn't getting the medicine. No wonder my chest hurt so bad, there was nothing blocking the pain. I found out later that in this situation they would normally put someone on a morphine drip right away, but for some unknown reason, they put me on injections of morphine every two hours instead. Needless to say, this was not enough to kill the pain that the surgery had caused. I was horribly uncomfortable that day, and had Matthew call everyone to tell them not to come see me. He stayed for a while, and late that night I did call Aimee to let her know she could come see me, that I was feeling a little better. I was so happy that she came, it was really nice to be able to visit with her. I was feeling pretty good....unfortunately, it wasn't going to last.
Sunday:
Sunday morning at 3am I woke up to horrible crushing pain. I couldn't move any of the right side of my body. If I did, I would immediately have a searing, ripping, makes you almost pass out horrible pain in my right front chest. This pain was worse than an unmediated childbirth by about 1000%. By the time Matthew got there at around 9am, I was in tears and honestly didn't know how I was going to keep going. The pain was so horrible, and I had been hurting for so long, I just wanted it to stop, and would have done anything to make that happen. I honestly cant even find words to describe how horrible that was. I asked for another epidural, because normally they wouldn't have taken that out until the chest tubes came out. They said it wasn't an option because of the risk of infection, and finally got the okay to give me a morphine drip. The IV Injections they had been giving me were 2ML of morphine every 2 hours. With the drip I would get 2ML of morphine every 10 minutes. Unfortunately, I was so far gone into the pain by the time they gave it to me that they had to give me the 2ML every 10 minutes plus bolsters of 4ML every 15 minutes or so for 2 HOURS before the pain was tolerable again. That to me is an unbelievable amount of morphine. I guess that's a good indication of how much pain I was really in. Once they got the pain under control, we had a new problem. Morphine is a chest suppressant, and because of how much I had in my system, I was essentially nodding out, and then my body would forget to breath. I would wake up trying to take a grasping breath of air, but I wasn't able to because of the condition of my lung. It was very scary, and I had to be put on oxygen. Oxygen tubes are so flattering :) Finally by early afternoon I was feeling better, although I was still pretty uncomfortable, at least it was now tolerable! My biggest problem next was my chest tubes. I had two of them coming out of my side, connecting together, and then going into this machine that sounded like a bubbly fish tank. It was providing gentle suction to get all the fluid out of my lungs, and to keep them inflating with air. They hurt. Bad. The worst was that I could actually feel them moving inside of me. Whenever I shifted my body, they banged around in my chest wall, and besides being painful and uncomfortable, it was a really strange feeling. I hated those things! I had some visitors Sunday, which was nice. The kids got to come up and see me, Mike and Kami came to see me, a family friend came to visit, and it was really nice getting to see everyone. I think it scared the kids a little to see me with so many IV's, the chest tubes, and the oxygen tubes, but I was so happy to see them. I have never been away from Rowan overnight before, and its been a long time since I have been away from Killian overnight, and its so so hard. Other than the pain, the worst part of the whole stay was missing my family. Luckily, Mike and Kami took the kids to do all kinds of fun things, so Matthew could come spend hours with me, and then Matthew was able to bring them up too so I could spend a little time with them. The rest of Sunday passed quickly, and I was starting to see a glimmer of light at the end of the tunnel.
Monday:
Monday was a tough day for me. To start with, I had a horrible nurse....she just had a way about her that drove me crazy, and it made for a rough day. Then the surgeons assistant came in around 1:00 to take out my chest tubes. I was really happy about it, but it hurt like hell! They don't numb you up or anything, she just had me take a deep breath and hold it (so that air wouldn't come in through the hole and get into my lung) and then she pulled them out. It felt like there was 3 feet of it coming out, and was a really strange yucky feeling. Then, while I was still holding my breath, she stitched it closed, and that was probably the most painful part of it. Same thing for chest tube #2, and then I was free of them! Strangely enough, for the rest of that day, i could have sworn they were still in, I could still feel them! About and hour later my Surgeon came in, and gave me bad news. He said that the tumor hadn't been the kind of cancer that they thought it was, it was a new, very rare kind, one that wasn't going to show up on the PET scan if it had spread, and that we were going to have to wait for the biopsy results to find out more. I was shocked. Here I thought we were all feeling pretty confident that we knew what kind of cancer it was, and that it had not spread. Now I find out that may not be true at all, and I was just devastated and shocked, and...mad. I was mad about having so many twists and turns with this situation, so many unknowns, and so many ups and downs. I didn't think I could handle much more. About 30 minutes after the doctor left, Matthew and the kids came by. I was telling Matthew how upset I was, when Killian said "I think I am going to throw up" and then he did, all over the floor of my room. And it was tuna fish sandwich too - yeck! Matthew had mentioned that Killian felt like he had a fever when he picked the kids up from Michelle's, and now we had the stinky evidence that he wasn't feeling good. My poor little guy :( They stayed about 5 minutes longer, and then left, because as much as I wanted to see the kids, I wanted to stay away from the germies, and Killy clearly needed to get home. After they left, a chaplain from the hospital came in to talk to me. She was a really nice lady, with a beautiful British accent that I enjoyed listening too. I talked to her for a while, because, although I don't believe in an organized religion version of God, I do believe in my version of God, and we have been having quite a few chats lately. She asked if a prayer would help, and I said yes - the more good thoughts for me the better! We prayed for a while, and then she left, saying she would be back tomorrow to hopefully talk to me about the biopsy results. As soon as she left, a cancer social worker for the hospital came in, and we talked for a long time, about support groups, meetings, and how to talk to the kids about my illness. We have already told them exactly whats going on, although we have spared them all the worries and fears we are feeling. She did have some good ideas though, one that I never would have thought of was to make sure to tell them, especially Rowan, that the cancer wasn't something that they could catch from me. I guess thats something that younger children really get worried about. She also gave me some books to read, and one for the kids that compares cancer to a weed in a garden. It was pretty cute, considering the topic. Once everyone left, the rest of the day went by really slowly for me. I didn't have any more visitors, and I had a heavy load of fear in my heart.
Tuesday:
I spent all of Tuesday morning anxiously awaiting a visit from my surgeon with the biopsy results. The morning was normal, they woke me up at 7ish to get my daily Xray done, and I had more delicious (ha) hospital food for breakfast and lunch. Finally around 2pm the doctor came to talk to me. He said that I had a very unusual tumor, because I actually had not one, but TWO types of cancer in my lung. I think my jaw hit the floor when he said that. My cancer is called Mucinous Adenocarcinoma and its apparently very rare. He said that the tumor was well defined (good) and low grade (also good) and that....drumroll...there was no evidence that the cancer had spread beyond my lung!!! The biopsies of my lymph nodes and blood vessels in my lung were all negative for cancer. He said that its a grey area whether or not I should do Chemotherapy right now, because he said that some people would say that I am now cancer free. He did refer me to an Oncologist because he agreed that I should see someone who is an expert. He also said that they think the cyst in my sinuses is no longer in danger of being cancerous, although I will have to see an ENT next month to talk about what we should do about it. Also, he told me the tumor was actually 4X5 CM which was much bigger than we originally though. He didn't seem concerned though, he said my chance of the cancer coming back was still only 30% and that I should "Go out and live my life, and hug my kids". Of course I was bawling at this point, this whole thing has been such an emotional roller coaster and to hear actual results, a final answer on what I have and the knowledge that its most likely gone entirely from my body was such a huge relief. He also said that I would get to go home the next day....hurray! I called everyone right away with the great news, and was in a really good mood for the rest of the day. I was sad that I couldn't see the kids, they were both home with high fevers and bad coughs, but Michelle and Jason came to visit me, and the right after they left Sarah came to chat and stayed for a long time. It was so nice to have a regular conversation about things that didn't involve cancer!
Wednesday:
I woke up this morning feeling really awful. I was sick to my stomach, which had been an ongoing problem for me. Being on all these narcotics was giving my poor stomach all kinds of trouble. I also had to get my 6th IV put in! 2 had been for the surgery, but the other 4 were all IV's for medicine that would "go bad" after a day or so, leaving my veins burning really badly when they tried to put anything in my IV. I was so bruised up! Aimee came that morning to visit, because Wednesday is usually our coffee day, and she brought me a Jamba Juice (coffee has been making me feel sick lately). It was the sweetest thing, and I was so excited to see her, but wasn't able to visit with her because I felt like I was either going to pass out or throw up. The kids and Matthew came to pick me up right when Aimee was leaving, but I was so sick that they went to a waiting room for an hour while I took a bunch of medicine to try to get me back to a place where I could function. It took another hour or so to get all the paperwork done, and then I was finally able to leave! It was a rough ride home, I was still so incredibly sore, but I was beyond happy to be home. Now I could finally get back to my life!
I don't remember much from this day, other than the morning time leading up to the surgery, and pockets throughout the afternoon/evening. Matthew and I got up at around 4, and I took a shower with this special soap that I had also had to wash with the night before. It was supposed to kill all the tiny things that always live on our bodies, to try to prevent infection when they started the surgery. It was weird and stinky! We headed out to the hospital and got there about 5:15am. We went straight to a little holding area, where I got my bed, gown and the fashionable compression socks I would wear the rest of my stay. We sat there for a while, until they were ready to take me back to anesthesia. They wheeled my bed upstairs and I got to give Matthew a final kiss before he had to go to the waiting room and I headed back to get prepped. My anesthesiologist was really nice, he did an epidural high on my spine, to numb my chest wall, and then did two IV's, one for meds and one that had a little heart monitoring device implanted inside, so they could keep an eye on my blood pressure without having to use a cuff. He had a little trouble getting that one in, so I was left a beautifully bruised abd sore wrist. Then they wheeled me in the surgical room, which was crazy...just like you see on TV! Big lights everywhere, tons of doctors and nurses getting scrubbed up and ready, table after table of instruments and tools. I was only awake in there for about 2 minutes before they knocked me out, and then it was off to lala land.
The next thing I remember was waking up with my shoulder on fire. They had me in this sling thing, moving me from the operating bed to another bed and they were also taking an xray of my chest. Thankfully the breathing tube had already been taken out, I had been a little worried about waking up with that still in. My shoulder was the only thing I could feel, and oh man...it hurt so bad. I thought it had been dislocated. I remember asking for pain medicine and Matthew, probably in that order. The rest of this time is a blur, I know Matthew came back, and I remember them giving me dose after dose of medicine, but nothing was working. They said that because my pain was already peaking, it was going to take a lot to get me back down to a comfortable place. I don't remember my chest or back hurting at all, just my arm. I remember that they let Matthew stay in there a really long time, it was supposed to be just 10 minutes, but he was in there for hours (or at least it felt like it). The only other thing I remember from that night was the horrible itchiness. I guess sometimes epidurals cause people to be really itchy and I had it bad. They gave me doses of Benadryl, and another kind of anti itch medicine injected into the skin of my stomach, but nothing helped. I had to stay in the critical care unit that night and I only got about 2 hours of sleep because I stayed awake most of the night itching uncontrollably, every part of my body that I could reach. I actually scratched my face so much that it was rubbed raw, and red and swollen the next morning :( I did remain relatively pain free that night, after they got enough pain medicine in to deaden my shoulder.
Saturday:
Much of this day is also a blur. I remember I woke up feeling pretty good, my arm was tolerable, the itching was still there, but I was dealing with it, and I was actually amazed at how good I was doing. I thought - I am going to breeze through this! I was soon to swallow those words! They moved me in the morning into a chair to sit in, and after a while I started noticing a cramping and burning in my chest. I was getting really uncomfortable, and kept calling for my nurse, but unfortunately, she was really really awful, and I waited two hours to get my pain meds. I was in tears by the time she came, and PISSED. Still, I thought it was just because I was late on the meds that I was so uncomfortable. Late morning, they moved me upstairs, and by this time, I was really hurting. Unlike the night before when I couldn't feel my chest, I was starting to feel more, and the pain was indescribable. Inside out, it felt like I was on fire, being crushed by heavy weights, and being ripped open, all at the same time. When I finally got upstairs, I was in so much pain. Matthew finally noticed the cause...where the epidural went into my spine, they was a huge bubble of fluid...the needle had come loose, and I wasn't getting the medicine. No wonder my chest hurt so bad, there was nothing blocking the pain. I found out later that in this situation they would normally put someone on a morphine drip right away, but for some unknown reason, they put me on injections of morphine every two hours instead. Needless to say, this was not enough to kill the pain that the surgery had caused. I was horribly uncomfortable that day, and had Matthew call everyone to tell them not to come see me. He stayed for a while, and late that night I did call Aimee to let her know she could come see me, that I was feeling a little better. I was so happy that she came, it was really nice to be able to visit with her. I was feeling pretty good....unfortunately, it wasn't going to last.
Sunday:
Sunday morning at 3am I woke up to horrible crushing pain. I couldn't move any of the right side of my body. If I did, I would immediately have a searing, ripping, makes you almost pass out horrible pain in my right front chest. This pain was worse than an unmediated childbirth by about 1000%. By the time Matthew got there at around 9am, I was in tears and honestly didn't know how I was going to keep going. The pain was so horrible, and I had been hurting for so long, I just wanted it to stop, and would have done anything to make that happen. I honestly cant even find words to describe how horrible that was. I asked for another epidural, because normally they wouldn't have taken that out until the chest tubes came out. They said it wasn't an option because of the risk of infection, and finally got the okay to give me a morphine drip. The IV Injections they had been giving me were 2ML of morphine every 2 hours. With the drip I would get 2ML of morphine every 10 minutes. Unfortunately, I was so far gone into the pain by the time they gave it to me that they had to give me the 2ML every 10 minutes plus bolsters of 4ML every 15 minutes or so for 2 HOURS before the pain was tolerable again. That to me is an unbelievable amount of morphine. I guess that's a good indication of how much pain I was really in. Once they got the pain under control, we had a new problem. Morphine is a chest suppressant, and because of how much I had in my system, I was essentially nodding out, and then my body would forget to breath. I would wake up trying to take a grasping breath of air, but I wasn't able to because of the condition of my lung. It was very scary, and I had to be put on oxygen. Oxygen tubes are so flattering :) Finally by early afternoon I was feeling better, although I was still pretty uncomfortable, at least it was now tolerable! My biggest problem next was my chest tubes. I had two of them coming out of my side, connecting together, and then going into this machine that sounded like a bubbly fish tank. It was providing gentle suction to get all the fluid out of my lungs, and to keep them inflating with air. They hurt. Bad. The worst was that I could actually feel them moving inside of me. Whenever I shifted my body, they banged around in my chest wall, and besides being painful and uncomfortable, it was a really strange feeling. I hated those things! I had some visitors Sunday, which was nice. The kids got to come up and see me, Mike and Kami came to see me, a family friend came to visit, and it was really nice getting to see everyone. I think it scared the kids a little to see me with so many IV's, the chest tubes, and the oxygen tubes, but I was so happy to see them. I have never been away from Rowan overnight before, and its been a long time since I have been away from Killian overnight, and its so so hard. Other than the pain, the worst part of the whole stay was missing my family. Luckily, Mike and Kami took the kids to do all kinds of fun things, so Matthew could come spend hours with me, and then Matthew was able to bring them up too so I could spend a little time with them. The rest of Sunday passed quickly, and I was starting to see a glimmer of light at the end of the tunnel.
Monday:
Monday was a tough day for me. To start with, I had a horrible nurse....she just had a way about her that drove me crazy, and it made for a rough day. Then the surgeons assistant came in around 1:00 to take out my chest tubes. I was really happy about it, but it hurt like hell! They don't numb you up or anything, she just had me take a deep breath and hold it (so that air wouldn't come in through the hole and get into my lung) and then she pulled them out. It felt like there was 3 feet of it coming out, and was a really strange yucky feeling. Then, while I was still holding my breath, she stitched it closed, and that was probably the most painful part of it. Same thing for chest tube #2, and then I was free of them! Strangely enough, for the rest of that day, i could have sworn they were still in, I could still feel them! About and hour later my Surgeon came in, and gave me bad news. He said that the tumor hadn't been the kind of cancer that they thought it was, it was a new, very rare kind, one that wasn't going to show up on the PET scan if it had spread, and that we were going to have to wait for the biopsy results to find out more. I was shocked. Here I thought we were all feeling pretty confident that we knew what kind of cancer it was, and that it had not spread. Now I find out that may not be true at all, and I was just devastated and shocked, and...mad. I was mad about having so many twists and turns with this situation, so many unknowns, and so many ups and downs. I didn't think I could handle much more. About 30 minutes after the doctor left, Matthew and the kids came by. I was telling Matthew how upset I was, when Killian said "I think I am going to throw up" and then he did, all over the floor of my room. And it was tuna fish sandwich too - yeck! Matthew had mentioned that Killian felt like he had a fever when he picked the kids up from Michelle's, and now we had the stinky evidence that he wasn't feeling good. My poor little guy :( They stayed about 5 minutes longer, and then left, because as much as I wanted to see the kids, I wanted to stay away from the germies, and Killy clearly needed to get home. After they left, a chaplain from the hospital came in to talk to me. She was a really nice lady, with a beautiful British accent that I enjoyed listening too. I talked to her for a while, because, although I don't believe in an organized religion version of God, I do believe in my version of God, and we have been having quite a few chats lately. She asked if a prayer would help, and I said yes - the more good thoughts for me the better! We prayed for a while, and then she left, saying she would be back tomorrow to hopefully talk to me about the biopsy results. As soon as she left, a cancer social worker for the hospital came in, and we talked for a long time, about support groups, meetings, and how to talk to the kids about my illness. We have already told them exactly whats going on, although we have spared them all the worries and fears we are feeling. She did have some good ideas though, one that I never would have thought of was to make sure to tell them, especially Rowan, that the cancer wasn't something that they could catch from me. I guess thats something that younger children really get worried about. She also gave me some books to read, and one for the kids that compares cancer to a weed in a garden. It was pretty cute, considering the topic. Once everyone left, the rest of the day went by really slowly for me. I didn't have any more visitors, and I had a heavy load of fear in my heart.
Tuesday:
I spent all of Tuesday morning anxiously awaiting a visit from my surgeon with the biopsy results. The morning was normal, they woke me up at 7ish to get my daily Xray done, and I had more delicious (ha) hospital food for breakfast and lunch. Finally around 2pm the doctor came to talk to me. He said that I had a very unusual tumor, because I actually had not one, but TWO types of cancer in my lung. I think my jaw hit the floor when he said that. My cancer is called Mucinous Adenocarcinoma and its apparently very rare. He said that the tumor was well defined (good) and low grade (also good) and that....drumroll...there was no evidence that the cancer had spread beyond my lung!!! The biopsies of my lymph nodes and blood vessels in my lung were all negative for cancer. He said that its a grey area whether or not I should do Chemotherapy right now, because he said that some people would say that I am now cancer free. He did refer me to an Oncologist because he agreed that I should see someone who is an expert. He also said that they think the cyst in my sinuses is no longer in danger of being cancerous, although I will have to see an ENT next month to talk about what we should do about it. Also, he told me the tumor was actually 4X5 CM which was much bigger than we originally though. He didn't seem concerned though, he said my chance of the cancer coming back was still only 30% and that I should "Go out and live my life, and hug my kids". Of course I was bawling at this point, this whole thing has been such an emotional roller coaster and to hear actual results, a final answer on what I have and the knowledge that its most likely gone entirely from my body was such a huge relief. He also said that I would get to go home the next day....hurray! I called everyone right away with the great news, and was in a really good mood for the rest of the day. I was sad that I couldn't see the kids, they were both home with high fevers and bad coughs, but Michelle and Jason came to visit me, and the right after they left Sarah came to chat and stayed for a long time. It was so nice to have a regular conversation about things that didn't involve cancer!
Wednesday:
I woke up this morning feeling really awful. I was sick to my stomach, which had been an ongoing problem for me. Being on all these narcotics was giving my poor stomach all kinds of trouble. I also had to get my 6th IV put in! 2 had been for the surgery, but the other 4 were all IV's for medicine that would "go bad" after a day or so, leaving my veins burning really badly when they tried to put anything in my IV. I was so bruised up! Aimee came that morning to visit, because Wednesday is usually our coffee day, and she brought me a Jamba Juice (coffee has been making me feel sick lately). It was the sweetest thing, and I was so excited to see her, but wasn't able to visit with her because I felt like I was either going to pass out or throw up. The kids and Matthew came to pick me up right when Aimee was leaving, but I was so sick that they went to a waiting room for an hour while I took a bunch of medicine to try to get me back to a place where I could function. It took another hour or so to get all the paperwork done, and then I was finally able to leave! It was a rough ride home, I was still so incredibly sore, but I was beyond happy to be home. Now I could finally get back to my life!