Surgery went well. It got off to a late start, and therefore didn't finish until late. It's just after midnight and I've been home for about 20 minutes.
Doctor Boente met with us while mom was in recovery. He said that he thinks they got all the tumors. He said he removed a tumor about "this" big and held his hands about 18 inches apart. On the way home, my kids started saying a tumor that size would be about the size of Ernie (one of our cats). And so, now we are calling Ernie "Tumor" and we are talking about mom's tumor as the Ernie sized tumor.
Mom was back in her room when I left tonight. She said she felt okay, although a bit worn out from the days events. Her throat hurt, she was coughing a bit, and she was tired. But she was really happy to see us, and she cried when we told her that the doctor got all of it.
We expect that she will be in the hospital for about 4 days, then she'll be resting at home for a few weeks before starting chemo.
As a side note... Mayo called today to schedule an appointment for an evaluation for Mom. They were looking at date near the end of next week. And the machine keeps running.
Wednesday, February 27, 2008
Tuesday, February 26, 2008
The Highlight (to date)
Mom was transferred to Fairview Southdale at 3:00 today. She was supposed to see the gyn oncologist today at 3:10. It wasn't possible for us to get her there on our own. Burnsville made the arrangements and for the most part, it was a smooth transition. Once again, however, I was surprised that they were not prepared with the pain meds.
The gyn oncology surgeon came to Mom's room after she'd been there for about an hour. The good news is he seemed to really know what he was talking about, and his confidence made all of us more comfortable. Surgery is tomorrow and he said that mom will be up and walking around and eating dinner by tomorrow night. He also told us about the process, that he'll do everything he can in surgery to get all of the cancer. He said that mom will be in the hospital for anywhere from 2 - 5 days after surgery (compare this with the 30 days+ estimate given to us by the other oncologist.)
I have to say that if this doctor delivers what he told us today, he will become my favorite doctor in the whole world. I'm saying my prayers.
The gyn oncology surgeon came to Mom's room after she'd been there for about an hour. The good news is he seemed to really know what he was talking about, and his confidence made all of us more comfortable. Surgery is tomorrow and he said that mom will be up and walking around and eating dinner by tomorrow night. He also told us about the process, that he'll do everything he can in surgery to get all of the cancer. He said that mom will be in the hospital for anywhere from 2 - 5 days after surgery (compare this with the 30 days+ estimate given to us by the other oncologist.)
I have to say that if this doctor delivers what he told us today, he will become my favorite doctor in the whole world. I'm saying my prayers.
A Setback
Mom went to the ER last night (Monday) and was admitted to the Fairview Ridges Hospital in Burnsville.
Craig (my brother, the baby in the family) suggested that in hindsight we should have been running a video camera throughout this entire process. He said we could make the next "SICKO" movie with this stuff. While we are all trying to be as understanding as possible when complications occur, it is very frustrating when it feels like we were lead to expect one thing and the reality is something completely different.
Mom's oncologist had told her on Friday that their main concern leading up to surgery was to keep the pain under control. We were told that if the pain could not be managed at home, to call the doctor, take Mom to ER and that she would be admitted to the hospital so that we could get her the right meds to relieve the pain.
Well, it didn't happen like that. We called, just like we were told to do, but we found out that our doctor was out for the week. I am still really struggling with this. I have to assume that something came up unexpectedly that made it impossible for Mom's doctor to tell us she was leaving or to prep the doctor filling in for her. But, I have to say, that even if that is the case, then I feel a bit like the clinic as a whole messed up. The doctor on-call Monday night was an arrogant, rude, asshole. (Please forgive my language.) First, my sister called the clinic and got the "answering service." The doctor called back. My sister said that we needed to take mom to the hospital and could he call ahead and get the admittance started so that they could get her pain meds right away when she got there. His response was to yell at my sister. He told her it didn't work that way. When she asked how it did work, he yelled at her again.
When Mom got to ER, she was in excruciating pain. ER was not ready for us, and they had to call the doctor Ann had just called. He then yelled at the ER doctor. They did admit mom, but when she got to the right floor, and into the room, they did not have any orders for pain meds. It took several hours to get mom meds, then when they finally came in they didn't have the right anti-nausea medication. I ended up taking the prescription we had from the other doctor out of her purse and giving it to her (much to the irritation of the nurse in the room.) It took another 30 minutes after that to get the morphine figured out.
Mom was such a wreck from what appeared to be a complete breakdown in communication between the people who we rely on for help, that she was insistent that she go home. That really wasn't a possibility, but it was indicative of mom's frustration level.
I ended up spending the night in the hospital and became quite a pain in the rear for the nurse. By about 4 am, we had everything down. Anti-nausea via drip, extended release morphine in the right doses at the right times, instant release morphine via IV, and ativan to help with anxiety and it works well for anti-nausea too.
I suppose I sound a bit ungrateful to the medical professionals. I am not really. It took some time, but it all go worked out. I just really struggle with the balance... this is MY MOM suffering here and yes, I know they need to follow procedures, care for others, etc... I value that. It just felt like it shouldn't have been so compliocated to get to the point we arrived at around 4 am.
Craig (my brother, the baby in the family) suggested that in hindsight we should have been running a video camera throughout this entire process. He said we could make the next "SICKO" movie with this stuff. While we are all trying to be as understanding as possible when complications occur, it is very frustrating when it feels like we were lead to expect one thing and the reality is something completely different.
Mom's oncologist had told her on Friday that their main concern leading up to surgery was to keep the pain under control. We were told that if the pain could not be managed at home, to call the doctor, take Mom to ER and that she would be admitted to the hospital so that we could get her the right meds to relieve the pain.
Well, it didn't happen like that. We called, just like we were told to do, but we found out that our doctor was out for the week. I am still really struggling with this. I have to assume that something came up unexpectedly that made it impossible for Mom's doctor to tell us she was leaving or to prep the doctor filling in for her. But, I have to say, that even if that is the case, then I feel a bit like the clinic as a whole messed up. The doctor on-call Monday night was an arrogant, rude, asshole. (Please forgive my language.) First, my sister called the clinic and got the "answering service." The doctor called back. My sister said that we needed to take mom to the hospital and could he call ahead and get the admittance started so that they could get her pain meds right away when she got there. His response was to yell at my sister. He told her it didn't work that way. When she asked how it did work, he yelled at her again.
When Mom got to ER, she was in excruciating pain. ER was not ready for us, and they had to call the doctor Ann had just called. He then yelled at the ER doctor. They did admit mom, but when she got to the right floor, and into the room, they did not have any orders for pain meds. It took several hours to get mom meds, then when they finally came in they didn't have the right anti-nausea medication. I ended up taking the prescription we had from the other doctor out of her purse and giving it to her (much to the irritation of the nurse in the room.) It took another 30 minutes after that to get the morphine figured out.
Mom was such a wreck from what appeared to be a complete breakdown in communication between the people who we rely on for help, that she was insistent that she go home. That really wasn't a possibility, but it was indicative of mom's frustration level.
I ended up spending the night in the hospital and became quite a pain in the rear for the nurse. By about 4 am, we had everything down. Anti-nausea via drip, extended release morphine in the right doses at the right times, instant release morphine via IV, and ativan to help with anxiety and it works well for anti-nausea too.
I suppose I sound a bit ungrateful to the medical professionals. I am not really. It took some time, but it all go worked out. I just really struggle with the balance... this is MY MOM suffering here and yes, I know they need to follow procedures, care for others, etc... I value that. It just felt like it shouldn't have been so compliocated to get to the point we arrived at around 4 am.
Saturday, February 23, 2008
The Next Steps
Well we met with the oncologist again yesterday. Overall, I'd say it was a good meeting. There were 5 of us crammed into an exam room with the doctor (I guess that makes 6.) We learned that everything we had been told before had been confirmed. Yes, she has ovarian cancer, yes the tumors are everywhere, and yes, it is an advanced stage.
The good news, we are going to one of the best gyn oncologist specialists in the metro area. He is from the University of MN, and a specialist and expert in this area.
Mom will be having surgery first, probably next week, and she'll be in the hospital for (in the doctors words) "a long time" afterwards. They are doing a "debulking" surgery and will remove as much as possible. She'll start chemo after that.
It looks like it will be a long road, but Mom is up to it, and we'll all be here helping as much as we can along the way.
Also, they changed Mom's meds and based on last night, I think they may have the pain under control. She is taking 2 different prescriptions of Morphine, one is an extended release (or long lasting) prescription which keeps a constant level of Morphine in her system at all times, and the other is the immediate release, which she can take as needed as the pain spikes up. She seemed comfortable for the first time this week.
Our next appointment is with the surgeon on Tuesday. I'll let you know how it goes.
The good news, we are going to one of the best gyn oncologist specialists in the metro area. He is from the University of MN, and a specialist and expert in this area.
Mom will be having surgery first, probably next week, and she'll be in the hospital for (in the doctors words) "a long time" afterwards. They are doing a "debulking" surgery and will remove as much as possible. She'll start chemo after that.
It looks like it will be a long road, but Mom is up to it, and we'll all be here helping as much as we can along the way.
Also, they changed Mom's meds and based on last night, I think they may have the pain under control. She is taking 2 different prescriptions of Morphine, one is an extended release (or long lasting) prescription which keeps a constant level of Morphine in her system at all times, and the other is the immediate release, which she can take as needed as the pain spikes up. She seemed comfortable for the first time this week.
Our next appointment is with the surgeon on Tuesday. I'll let you know how it goes.
Wednesday, February 20, 2008
The Biopsy
Mom went to the hospital this morning for the biopsy. The procedure itself went well. Waiting in the waiting room for the procedure to begin really sucked. Mom couldn't eat or drink anything (not even water) for 4 hours preceding the biopsy. She can't take her morphine without eating, and so she had taken the last dose of morphine at 6:30 am. Apparently something had gone wrong earlier in the morning in the radiology department and so everything was running behind. After 2 hours in the waiting room, mom was reaching her threshhold for pain. Near noon I went to the desk and told the receptionists that they needed to get my mom some help right away. She wasn't going to make it another 10 minutes. Fortunately they paged a nurse and they were able to bring mom directly in and give her an IV with pain meds.
Tuesday, February 19, 2008
The PET Scan
We went to LifeScan in Edina today for the PET Scan. I think LifeScan must make a lot of money... leather sofas, mahogony chairs with brocade padded seats... not that any of that is relevant. All that really matters is they do their jobs well.
At the end of the appointment they gave us a disk with mom's PET scan results. Obviously, I have no training in these matters at all, in fact I told mom that I wasn't even able to decipher where her organs were on the scan. That's not entirely true however, but the scan is so damn depressing that I don't dare give her the results. In fact, I am keeping my fingers crossed that I am completely wrong, but you can clearly see that due to the tumors and the fluid in my mom's abdomen that her lungs are being squooshed to about half their normal size. It looks like the tumors are all over the place, again, I pray I am wrong. We'll know for certain when we get the results back from the oncologist on Friday.
I had this copy created so that we can hand carry it to Mayo with us. I'll be making that trip in the next day or so.
Mom is still in a lot of pain, but it does taper off for a few hours right after she takes her morphine. Unfortunately, as soon as the pain is out of control, it takes awhile to get it back to a manageable point. She is staying very strong in thought though, even with the pain. She is determined to beat this.
Tomorrow is the biopsy. I'll post more then.
At the end of the appointment they gave us a disk with mom's PET scan results. Obviously, I have no training in these matters at all, in fact I told mom that I wasn't even able to decipher where her organs were on the scan. That's not entirely true however, but the scan is so damn depressing that I don't dare give her the results. In fact, I am keeping my fingers crossed that I am completely wrong, but you can clearly see that due to the tumors and the fluid in my mom's abdomen that her lungs are being squooshed to about half their normal size. It looks like the tumors are all over the place, again, I pray I am wrong. We'll know for certain when we get the results back from the oncologist on Friday.
I had this copy created so that we can hand carry it to Mayo with us. I'll be making that trip in the next day or so.
Mom is still in a lot of pain, but it does taper off for a few hours right after she takes her morphine. Unfortunately, as soon as the pain is out of control, it takes awhile to get it back to a manageable point. She is staying very strong in thought though, even with the pain. She is determined to beat this.
Tomorrow is the biopsy. I'll post more then.
Monday, February 18, 2008
The Oncologist
At 12:30 we went to see the oncologist directly from the ER.
In ER, mom was given morphine and an anti-nausea medication. We figured we had about 2 hours before she would need more pain meds. The ER doctor had prescribed morphine to take home with her, but we didn't have the prescription filled yet.
Dr. Avina Singh was wonderful. She had already reviewed the CT scan and understood the magnitude of how sick my mom was. She ordered a series of more tests. A PET scan, a biopsy, another CT scan, and some blood work to look for cancer markers.
Mom asked the doctor if she could tell us what the chances for survival were, but Dr. Singh declined from answering saying that until we had a PET scan and the biopsy results we couldn't even begin to talk about treatment and that if she were to tell us any number as a percentage of survival that it would stick in our heads regardless of whether we later learned something that would change the prognosis.
I wanted to ask about what the ER doctor had said to me about the "2 weeks" but since mom hadn't heard that, I didn't dare bring it up.
Mom has another appointment on Friday.
In ER, mom was given morphine and an anti-nausea medication. We figured we had about 2 hours before she would need more pain meds. The ER doctor had prescribed morphine to take home with her, but we didn't have the prescription filled yet.
Dr. Avina Singh was wonderful. She had already reviewed the CT scan and understood the magnitude of how sick my mom was. She ordered a series of more tests. A PET scan, a biopsy, another CT scan, and some blood work to look for cancer markers.
Mom asked the doctor if she could tell us what the chances for survival were, but Dr. Singh declined from answering saying that until we had a PET scan and the biopsy results we couldn't even begin to talk about treatment and that if she were to tell us any number as a percentage of survival that it would stick in our heads regardless of whether we later learned something that would change the prognosis.
I wanted to ask about what the ER doctor had said to me about the "2 weeks" but since mom hadn't heard that, I didn't dare bring it up.
Mom has another appointment on Friday.
The Call To Mayo
7:00 am - the phone lines open for the central appointment desk at Mayo. I dialed at approximately 7:00:15. I finally reached a human at 7:27 am. I tried to explain to the person on the other end of the phone that we needed an appointment right away. She asked me to send the biopsy report, but of course, there hasn't been a biopsy yet. I told her that we had been to ER and had a diagnosis and that the doctor in the ER had told my mom to "get her life in order" and had told me in the hallway that this could go very quickly, that my mom's cancer was very advanced. The Mayo lady transfered me to the GI oncology department, where I talked to Vicky. She asked me to have ER fax their report to her directly and that she would have it reviewed.
I called Fairview Ridges and got a "release" from them for mom to sign. I then drove to mom's. She was in pretty bad shape, the pain was out of control and she was vomitting, which was making the pain worse. Dave was getting ready to take her to the ER.
I personally walked the release to health information management services office and they had already pulled the records and had them ready to fax.
I called back to Mayo about 30 minutes later, and verified that they had received the records and then asked if we could schedule an appointment. I was told that it would take several day for the doctors to review the report and that we could expect a call by Friday. I again tried to explain the urgency to the person on the other end of the phone... but it obviously was not in her control...
And so, it seems that I can't get the Mayo machine to move any faster.
I called Fairview Ridges and got a "release" from them for mom to sign. I then drove to mom's. She was in pretty bad shape, the pain was out of control and she was vomitting, which was making the pain worse. Dave was getting ready to take her to the ER.
I personally walked the release to health information management services office and they had already pulled the records and had them ready to fax.
I called back to Mayo about 30 minutes later, and verified that they had received the records and then asked if we could schedule an appointment. I was told that it would take several day for the doctors to review the report and that we could expect a call by Friday. I again tried to explain the urgency to the person on the other end of the phone... but it obviously was not in her control...
And so, it seems that I can't get the Mayo machine to move any faster.
Sunday, February 17, 2008
Peritoneal Carcinomatosis
And hence the research begins.
I seriously don't want to have to know this, but how can you do anything but dive in? How can I advocate for my mom if I don't know what the hell the doctors are saying.
And so I have a definition. Peritoneal Carcinomatosis = REALLY BAD SHIT.
This is the term for cancer that has spread to the peritoneal sack that encompasses the organs in the abdomen. Peritoneal carcinomatosis can be caused by several types of cancer, including gastro-intestinal cancers, like colon cancer, or ovarian cancer. Until the results of the biopsy return, we won't know for certain which type this stems from, but the oncologist has told us that this is a presentation that might be more likely with ovarian cancer. And so, the peritoneal carcinomatosis diagnosis is given when the cancer tumors have formed on this peritoneal sack. This only happens after cancer has metatisized.
Also, when I was in the ER with mom, I heard the nurse and doctor say that swelling and pain is caused by the ascites in the abdomen. Well, peritoneal carcinomatosis, with the presence of ascites is the defintion of 4th stage (ovarian) cancer.
And so I continue to read. In fact, I have purchased articles from several medical journals related to this topic, including information about the cancer itself and about the treatment options. If you want to see any of them, let me know, I can email them, they are all in PDF format.
I don't think I'll be able to write any long blogs about this, I realize as I am typing this that it is somewhat theraputic, but at the same time, its forcing me to think about the topic... and I don't know that I can do that.
I seriously don't want to have to know this, but how can you do anything but dive in? How can I advocate for my mom if I don't know what the hell the doctors are saying.
And so I have a definition. Peritoneal Carcinomatosis = REALLY BAD SHIT.
This is the term for cancer that has spread to the peritoneal sack that encompasses the organs in the abdomen. Peritoneal carcinomatosis can be caused by several types of cancer, including gastro-intestinal cancers, like colon cancer, or ovarian cancer. Until the results of the biopsy return, we won't know for certain which type this stems from, but the oncologist has told us that this is a presentation that might be more likely with ovarian cancer. And so, the peritoneal carcinomatosis diagnosis is given when the cancer tumors have formed on this peritoneal sack. This only happens after cancer has metatisized.
Also, when I was in the ER with mom, I heard the nurse and doctor say that swelling and pain is caused by the ascites in the abdomen. Well, peritoneal carcinomatosis, with the presence of ascites is the defintion of 4th stage (ovarian) cancer.
And so I continue to read. In fact, I have purchased articles from several medical journals related to this topic, including information about the cancer itself and about the treatment options. If you want to see any of them, let me know, I can email them, they are all in PDF format.
I don't think I'll be able to write any long blogs about this, I realize as I am typing this that it is somewhat theraputic, but at the same time, its forcing me to think about the topic... and I don't know that I can do that.
Saturday, February 16, 2008
The Background
Mom hadn't been feeling well all week. She was tired, nauseas, and generally felt like she had the flu. On Friday she had lunch with her friend Darlene and by the end of the lunch, she was feeling pretty awful. She went home to rest. By the time Dave arrived home from work, mom wasn't able to get out of bed. The pain was so intense she couldn't move. By 1:00 am things were progressing downhill quickly, with both pain and vomitting. By 4 am, Dave was insisting that mom go the the ER.
I am still struggling with how this has happened so quickly. Two weeks ago, mom and I were in Mankato attending a mystery dinner theater fund raising event. A few days later she bought tickets to the show "My Fair Lady" for her and I to go to for my upcoming 39th birthday. And now she has cancer. Is that even possible?
Apparently it is.
I am still struggling with how this has happened so quickly. Two weeks ago, mom and I were in Mankato attending a mystery dinner theater fund raising event. A few days later she bought tickets to the show "My Fair Lady" for her and I to go to for my upcoming 39th birthday. And now she has cancer. Is that even possible?
Apparently it is.
The Call
Saturday morning, Dave called to tell me that I needed to come to the ER in Burnville immediately. I asked what was going on, and he told me that mom was in the ER and it was bad. I asked if it was her heart, and he said no. I asked if she was okay, and he said, "just get here." He also told me to call Ann and Craig right away. And so I did. I was a wreck. I know now that Dave was just trying to keep me from panicking, but unfortunately it had the opposite effect. I was quite convinced that I was going to get to the ER and have to say goodbye to mom.
And so, when we learned that mom had cancer, I have to say, it was actually somewhat of a relief. At least with cancer there is a fighting chance that its going to be okay.
When we left the ER, we had a discharge slip from the doctor. At the top of the page, it said diagnosis: peritoneal carcinomatosis. I didn't know what that was, but I knew it wasn't good. But again, she was alive, which quite frankly I hadn't been sure that was the case earlier in the day.
And so, when we learned that mom had cancer, I have to say, it was actually somewhat of a relief. At least with cancer there is a fighting chance that its going to be okay.
When we left the ER, we had a discharge slip from the doctor. At the top of the page, it said diagnosis: peritoneal carcinomatosis. I didn't know what that was, but I knew it wasn't good. But again, she was alive, which quite frankly I hadn't been sure that was the case earlier in the day.
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