There have been quite a few things that have happened in the last day or so: Christine walked around a little bit (yay!), she sat up in a chair for a few hours (double yay!), got moved from the ICU into a regular room (triple yay!), and FINALLY farted. (woohoo!)
Everyone was pretty happy she got moved out of the ICU, but it took a while for them to find a bed for her. Apparently they had been trying to find a bed since last night, and was only able to find one this afternoon. She got moved into the new room about 2:15pm. The new nurse took her vitals, got her all set up and then told us that they would come back in in about four hours to check her vitals again. SEVEN HOURS later, the next new nurse was finally able to check her vitals. And one of her machines starting beeping, which Christine's roommate's nurse (oh, did I tell you it's a shared room? Dammit) told us it was a warning to the nurses that the epidural machine was running low on meds. So we waited for them to change the meds... and waited... and then Matt and I left because visiting hours were over (oh yeah, they wouldn't let Matt stay in the room overnight because it's a shared room)... and then when I finally got back to my parents' house in Chino (which was about 11pm) Christine texted me to let me know that she JUST got her meds. So yeah... we miss the ICU because we didn't have any of that shit happen, ever.
So, Christine is now a farting machine! Sweet! Still not totally sure when she can start getting something more than ice chips, which is what she's had since she's gotten out of surgery. At one point the nurse sent in the attending physician because we were wondering when they would let her have something and he was a really big help. If by big help he actually did jack shit, then yes, he was a big help. He could not tell us when she'd be able to get some sustenance nor what the estimate was for her length of stay, although he did tell us that her surgery team would be coming by sometime tomorrow morning to talk to her about... um... stuff.
For all who are wondering, "So how is Chris doing?" she's doing fine. She's looking much better and says that she's feeling fine. She isn't super out of it, although the pain medication can make her a little drowsy. She would still love for everyone to come and visit, if you can, and you don't have to worry about the farting. It doesn't smell.
-Cathy
P.S. Christine should be able to update the blog from now on, which is good, since I will be going back home to Seattle tomorrow afternoon and she is doing much better.
Monday, March 28, 2011
Saturday, March 26, 2011
Fart, or No Food!
I know everyone is waiting for more updates, so I have come to deliver! Christine has been in the ICU for the past two days. We were hoping that she would get moved to a regular room today, but it didn't quite happen. She did get the tubes from her neck and nose taken out and from one of her wrists. She's looking decidedly better and she says that she's feeling much better. She should be moved to the regular room tomorrow morning, which will be great because that means thy she'll be able to see Autumn in person rather than through video chat on our phones. Christine did want me to tell you all that she would love for all of you to come visit, so if you can, party in her room!
Now if we could only get her to fart...
-Cathy
Now if we could only get her to fart...
-Cathy
Thursday, March 24, 2011
Surgery is complete!
So we just spoke to Dr. Selby. The surgery went very well and he felt that the margins were good (which means that they think they got almost all of the tumor out). Christine did not have to have any blood transfused. They were able to keep a lot of her pancreas and the doctor said that as long as she maintains her weight she should not have to worry about diabetes. He also mentioned that her lymph nodes looked good and they weren't enlarged, but they will still take a look to see if there's anything microscopically. As for her liver, they shaved a portion of it to biopsy, but noticed that the small lesions they saw during her last CT scan was more like a bruise. I believe he called it a hemangioma, and at surface did not seem cancerous, but again, they will check the liver to see if there's anything microscopically. The tumor also did not invade the stomach, but what it was affecting was the vein that carried stuff out of the stomach (I know I'm being really technical here), which they were able to cut away from the tumor and rebuild. That means they did not have to take any portion of her stomach. Dr. Selby said that he was "very pleased" with the outcome of the procedure.
They've brought Christine into the ICU, but it will still be another 2 1/2 hours before we know if we can go visit her. I think everyone here is super relieved and feeling really optimistic. Thanks everyone for all of your support!
- Cathy
They've brought Christine into the ICU, but it will still be another 2 1/2 hours before we know if we can go visit her. I think everyone here is super relieved and feeling really optimistic. Thanks everyone for all of your support!
- Cathy
More News
Hey everyone,
So we just had a visit from Dr. Selby. So this is what we know: The big reason it has been taking so long is because they were not able to embolize to stop the supply of blood to the tumor, so they had to go through the artery that supplies the pancreas, spleen, and the tumor to try to stop the supply of blood that way. (Sorry, I don't remember the name of the artery and even if I did, I wouldn't know how to spell it.) When they were finally able to do it, the tumor decreased in size by 40%, which is good, because that mean the tumor was mostly blood. The doctor also said that it looks like they'll be able to save a good portion of the pancreas, which may mean that Christine will not be insulin dependent. They haven't been able to check out the liver too much, but so far, there wasn't anything superficial that they could see at this point. Everything sounds like good news, except they still have another 3 hours, which means, we wait for another 3 hours.
Will continue to keep you all posted when we get more news.
-Cathy
So we just had a visit from Dr. Selby. So this is what we know: The big reason it has been taking so long is because they were not able to embolize to stop the supply of blood to the tumor, so they had to go through the artery that supplies the pancreas, spleen, and the tumor to try to stop the supply of blood that way. (Sorry, I don't remember the name of the artery and even if I did, I wouldn't know how to spell it.) When they were finally able to do it, the tumor decreased in size by 40%, which is good, because that mean the tumor was mostly blood. The doctor also said that it looks like they'll be able to save a good portion of the pancreas, which may mean that Christine will not be insulin dependent. They haven't been able to check out the liver too much, but so far, there wasn't anything superficial that they could see at this point. Everything sounds like good news, except they still have another 3 hours, which means, we wait for another 3 hours.
Will continue to keep you all posted when we get more news.
-Cathy
First update
So, after waiting about 4 1/2 hours we finally got an update. The doctors are still working on Christine, everything is going well and Christine is doing well.
It's a big relief for us who are waiting, but man, we were starting to get antsy. This waiting is killing us! They give the families that are waiting these pagers and they're supposed to buzz when there is news. They look a little like the pagers you get when you're waiting for a table at a restaurant. After a while, we started hearing the buzzing from the other families and ours was just sitting on the table. It sucked. When it finally did buzz, we all headed as a group to find out the news and were given three sentences: They're still working, it's going well, the patient is doing fine. I don't know about everyone else, but I felt it was a relief and little anti-climatic at the same time.
Well, that's about it for now. Will post again when we hear more news.
-Cathy
It's a big relief for us who are waiting, but man, we were starting to get antsy. This waiting is killing us! They give the families that are waiting these pagers and they're supposed to buzz when there is news. They look a little like the pagers you get when you're waiting for a table at a restaurant. After a while, we started hearing the buzzing from the other families and ours was just sitting on the table. It sucked. When it finally did buzz, we all headed as a group to find out the news and were given three sentences: They're still working, it's going well, the patient is doing fine. I don't know about everyone else, but I felt it was a relief and little anti-climatic at the same time.
Well, that's about it for now. Will post again when we hear more news.
-Cathy
Surgery Day
Hi everyone! This is Cathy, Christine's sister. I will be giving updates on Christine's surgery as we get information.
Right now, we are at USC University Hospital, where the surgery is scheduled. Christine has been taken into the OR and they will be giving her an epidural. Matt said that there are 3 or 4 surgeons, which I'm assuming is including the main surgeon, Dr. Selby. They should be giving us regular updates, but that's all I know for now. Christine is, understandably, nervous but Matt felt that the surgeons were optimistic and they tried to keep her spirits up.
Right now, we are at USC University Hospital, where the surgery is scheduled. Christine has been taken into the OR and they will be giving her an epidural. Matt said that there are 3 or 4 surgeons, which I'm assuming is including the main surgeon, Dr. Selby. They should be giving us regular updates, but that's all I know for now. Christine is, understandably, nervous but Matt felt that the surgeons were optimistic and they tried to keep her spirits up.
Surgery. The scariest 7 letter word I know.
Another short but sweet. I'm wicked tired and have to be up in a few hours.
In about 7 hours, I'll be in surgery. Yeesh... surgery. I've had a couple. Laser eye surgery. C-Section. A Lumpectomy. But this one... wowzers. I'm, as you all already know, scared shitless. But I've gotten so much votes of confidence, words of support, and notifications of prayers that I feel less worried than I've felt in a while. Don't get me wrong... I still feel like crying... and I have. Especially when I had to drop of my daughter at my parents house.
I spent a few hours there hanging out with my family. Watched my niece play with my daughter and then watched her sleep during her short 20 minute nap. That was my cue to pick her up and hand her off to my mom, who will not be at the hospital tomorrow but staying home to pray a Novena for me with her sisters. But before I could even hand her over to my mom I froze and just stood there holding my baby Autumn in my arms. That's when the tears started to flow. I could not let her go. There were nor are any words I can use to express what I was feeling at that time because I don't even know what I was feeling. Yes, scared is one word. Worried is another. But neither of those words really describe all that was going through me at that moment. So I just stood there and cried. And my mom and sisters and aunts all came over and hugged me and told me it would be fine and that Autumn would be fine. And I know she will be. I just love that kid so much, the thought of being away from her for so long just makes me want to scream. Yes, I know a week is a relatively short amount of time, but dude... for me to be away from my baby for that long seems like an eternity. Even now as I sit here in bed and type this, I should be hearing her little snores and occasional bedtime grunts as she squirms in her crib. But I don't hear that. Nor do I see her when I look into her crib. And my heart cries... and then my eyes follow suit. I REALLY hope they let her come to my hospital room after I'm out of the ICU.
Anyway, I hope to be updating you all myself real soon. Hopefully in a few days. Until then, my sister Cathy will be posting on my blog to update you all and tell you how I'm doing. My thanks to all of you who have been reading this and offering up words of support. I really do appreciate all the love you guys have expressed to me.
I'll "see" you all very soon. I have some cancer ass kicking to do right now.
In about 7 hours, I'll be in surgery. Yeesh... surgery. I've had a couple. Laser eye surgery. C-Section. A Lumpectomy. But this one... wowzers. I'm, as you all already know, scared shitless. But I've gotten so much votes of confidence, words of support, and notifications of prayers that I feel less worried than I've felt in a while. Don't get me wrong... I still feel like crying... and I have. Especially when I had to drop of my daughter at my parents house.
I spent a few hours there hanging out with my family. Watched my niece play with my daughter and then watched her sleep during her short 20 minute nap. That was my cue to pick her up and hand her off to my mom, who will not be at the hospital tomorrow but staying home to pray a Novena for me with her sisters. But before I could even hand her over to my mom I froze and just stood there holding my baby Autumn in my arms. That's when the tears started to flow. I could not let her go. There were nor are any words I can use to express what I was feeling at that time because I don't even know what I was feeling. Yes, scared is one word. Worried is another. But neither of those words really describe all that was going through me at that moment. So I just stood there and cried. And my mom and sisters and aunts all came over and hugged me and told me it would be fine and that Autumn would be fine. And I know she will be. I just love that kid so much, the thought of being away from her for so long just makes me want to scream. Yes, I know a week is a relatively short amount of time, but dude... for me to be away from my baby for that long seems like an eternity. Even now as I sit here in bed and type this, I should be hearing her little snores and occasional bedtime grunts as she squirms in her crib. But I don't hear that. Nor do I see her when I look into her crib. And my heart cries... and then my eyes follow suit. I REALLY hope they let her come to my hospital room after I'm out of the ICU.
Anyway, I hope to be updating you all myself real soon. Hopefully in a few days. Until then, my sister Cathy will be posting on my blog to update you all and tell you how I'm doing. My thanks to all of you who have been reading this and offering up words of support. I really do appreciate all the love you guys have expressed to me.
I'll "see" you all very soon. I have some cancer ass kicking to do right now.
Monday, March 21, 2011
Nausea and The Big V
This will be short and sweet.
I know you ALL want to know I vomited. Yes, I did. And you would think, "Hey, she's got cancer... why wouldn't she vomit?", right? Actually, I have not vomited in a very long time. Not even when I was pregnant. I did not have morning sickness and therefore I never puked. I never even felt nauseous. Nausea came sometime before my birthday last year... probably around Thanksgiving. And I've been living with this nausea for a good 3 months now never having vomited. I can usually ride out the nausea wave and then move on with my day.
Well, I guess everything has just finally caught up with me. With all the things I've been worried about, taking care of Autumn, and trying to live a normal life with this surgery looming large over my head, I think I have bitten off more than I can chew. Because tonight after eating a very yummy dinner, I was suddenly and without warning, hit with an overwhelming urge to vomit. Not just a wave a nausea... but a knock upside the head with dizziness prancing hand in hand with nausea and with vomit trying to force its way through the door. I gave Autumn to Matt headed to the bathroom and then basically spilled my guts. Literally.
I think I'm getting sick. Just a cold really. Not a sinus infection like Matt has. But sick just the same. Which is not good since my surgery is Thursday and if I'm sick I can't have the surgery. As much as I don't want to have surgery, I don't want to prolong it either. The next available time for me to have the surgery would be at the end of April and non of my doctors feel this would be a good thing. They all agree that I need to get this tumor out as soon as possible. I was told to rest and take it easy. I think I will finally take their advice. I've been more tired than I've ever been in my life. I can barely think straight. I know I don't want to get sick... this surgery needs to be done and over with so I can move on to the next part of me kicking this cancer's ass. But man I'm tired. But I know there is still so much to do... I'm going to need some major help.
Ok, I can't look at the screen anymore, so I'm going to finish this tea Matt made for me and get some rest. And maybe sleep. But no more vomit please. I can't take anymore of this nausea either...
I know you ALL want to know I vomited. Yes, I did. And you would think, "Hey, she's got cancer... why wouldn't she vomit?", right? Actually, I have not vomited in a very long time. Not even when I was pregnant. I did not have morning sickness and therefore I never puked. I never even felt nauseous. Nausea came sometime before my birthday last year... probably around Thanksgiving. And I've been living with this nausea for a good 3 months now never having vomited. I can usually ride out the nausea wave and then move on with my day.
Well, I guess everything has just finally caught up with me. With all the things I've been worried about, taking care of Autumn, and trying to live a normal life with this surgery looming large over my head, I think I have bitten off more than I can chew. Because tonight after eating a very yummy dinner, I was suddenly and without warning, hit with an overwhelming urge to vomit. Not just a wave a nausea... but a knock upside the head with dizziness prancing hand in hand with nausea and with vomit trying to force its way through the door. I gave Autumn to Matt headed to the bathroom and then basically spilled my guts. Literally.
I think I'm getting sick. Just a cold really. Not a sinus infection like Matt has. But sick just the same. Which is not good since my surgery is Thursday and if I'm sick I can't have the surgery. As much as I don't want to have surgery, I don't want to prolong it either. The next available time for me to have the surgery would be at the end of April and non of my doctors feel this would be a good thing. They all agree that I need to get this tumor out as soon as possible. I was told to rest and take it easy. I think I will finally take their advice. I've been more tired than I've ever been in my life. I can barely think straight. I know I don't want to get sick... this surgery needs to be done and over with so I can move on to the next part of me kicking this cancer's ass. But man I'm tired. But I know there is still so much to do... I'm going to need some major help.
Ok, I can't look at the screen anymore, so I'm going to finish this tea Matt made for me and get some rest. And maybe sleep. But no more vomit please. I can't take anymore of this nausea either...
Saturday, March 19, 2011
What's Up Doc? Part II
Sorry about that last entry. It was pretty lame.
To continue: I had another CT scan and an echo cardiogram plus an EKG on March 1st. The results from the CT showed that the tumor had grown about 1/2 a cm around. Because I've been having heart palpitations and chest pains I was instructed to get the echo and the EKG to make sure my heart was ok (it is). Because of the growth of the tumor, I was told my surgery was set for March 11th. Um... no go people. I told you guys I had my daughter's baptism that day. "Oh, we thought you meant for the CT." Let me ask you... if you say you're not available for a CT what in hell makes you think I'd be available for fucking SURGERY??? Reschedule that shit please. Plus, I still hadn't seen the oncologist which was set for the Monday before my daughter's baptism, March 6th.
I had all these plans to do stuff with my daughter, my friends and family before I had to have surgery. I thought I had at least 6 weeks before my surgery would be scheduled because of Medi-Cal. Apparently, I didn't need to wait. I wanted to go to Disneyland, I wanted to eat A LOT of food, I wanted to just take time and hang out with Autumn before I had to get this surgery that would basically render me unable to carry my child for at least 2 weeks to a month. So my sister was coming in the Sunday before the baptism (she is also one of her godmothers) and we were going to do Disneyland with my other two sisters, my mom and Matt. My dad couldn't go because of his back issues. Well, needless to say, I was able to go to Disneyland with my sisters and take Autumn on her first Disneyland trip. I hung out with my awesome friends during her baptism and the day after and saw some cousins I hadn't seen in a while. It was a good week.
So to get back to what I was talking about. Met with the oncologist at USC Norris Cancer center on the 6th. He basically said more of the same of what Drs. Ramos and Selby had told me. That my tumor was rare and slow growing (a good thing) and that the only way to get this thing out of me quickly would be surgery as these types of tumors are chemo resistant (the not so good thing). He did mention the two drugs that I had been told about by Gabe's mom that had been used in the treatment of Kidney Cancer that have been known to be very effective in the treatment of my type of tumor. But because my tumor is so large the best course of action would be to remove the tumor and hope that everything is basically removed in that surgery.
But wait! There's more!!!
The oncologist also dropped a bomb on me and my entire family (who was with me when I met with him. Yes, I come with an entourage now). The last CT scan showed that I had new lesions on my liver. Very small, but several of them. They are not part of the original big ass tumor I currently have. They are new lesions. Which means this thing has metastasized. Because of this one thing that was found, my status in terms of cancer stage has been reclassified as Stage 4. Apparently, when a tumor metastasizes to another organ, that puts you in the later stage. We are unsure where the lesions are (he had JUST looked at the CT briefly and found the new lesions. As of this last Monday, he has not discussed the new findings with my surgeon. More on that later.
Needless to say, to hear I now have Stage 4 cancer as opposed to the Stage 1 or 2 I had originally thought I had has shocked the shit out of me. I knew this was a possibility, but SERIOUSLY? I knew that these neuroendocrine tumors have been known to metastasize to the liver, the lymph nodes, the bones, the brain, anywhere close to the pancreas. But I didn't think it would happen that quickly. But to put it in perspective, this tumor may have been in me for YEARS before I finally felt it that day in my OB's office, which is the reason it's so damned large and I did just get diagnosed a little over a month ago. It was the 3 months before that where I was scrambling around trying to figure out what this thing was that made it seem like forever. I wonder if it has actually gone anywhere else... Anyway, I asked the oncologist what would happen as a result of the new lesions. He said he would talk to Dr. Selby (surgeon) and see if it was removable during my surgery. If not, then we would do another scan about a month and a half after my surgery to see if there was anything else left and I would probably need to have chemo or take those meds I had discussed earlier as treatment if there was still more cancer left.
After the oncologist on the 6th, I spent the rest of my week getting ready for the baptism, spending time with my daughter, my love, my family and friends in celebration of my baby (as I stated earlier). Then on Monday, it was back to Cancer Watch 2011. Had another appointment with Dr. Selby on the 14th to discuss a change in my surgery. I assumed it was about the new lesions on my liver. Matt, Autumn, my mom and dad, and Cheryl came with me to Dr. Selby's office to discuss the new surgery. First off, the surgery had already been scheduled. For March 24th. Giving me only a week and a half to get shit in order and to get right in my head for this surgery. Because to tell you all the truth, I've been terrified and crying nightly after everyone is asleep just scared of this surgery. I even found myself crying on a ride at Disneyland (Soaring over California - man what a beautiful ride). So to know that my surgery date was so close just made my mouth go dry, my heart drop to my stomach and my eyes glaze over all at the same time. I had been hoping for a little time to just hang with the baby. Get Matt situated with stuff with her... since my recovery time will be lengthy, he'll have his hands full. I wanted him to get to know her cries and her fussiness on the rare occasions when she is fussy. Because he whigs out a little when her crying becomes a little intense. Hahaa...
After discovering my surgery was going to be next week, I was told what the change in my surgery was going to be. It had nothing to do with the liver. Actually, Dr. Selby had not talked to the oncologist yet (strange, since a week had already passed and the oncologist said he'd call Dr. Selby that day which was last Monday). We were told that they would be doing a "distal pancreatectomy", where they remove the part of the body and the tail of the pancreas, but that there was a chance they would have to do a "pancreatectomy" where they remove the entire pancreas. What does that mean for me after the surgery? I become an insulin dependent diabetic (type 1) and that before I eat anything, including snacks, I would have to take enzyme pills before eating. For the rest of my life. They will not know for sure until they've opened me up and taken a look at the situation, but I needed to be informed that this would be a possibility. So there it was. Surgery scheduled. Scared shitless. I had Dr. Selby walk me through the part of the surgery that scared me the most which was the area dealing with the Superior Mesenteric Artery. He said it didn't appear as if the tumor had invaded that artery (I read that if it had, then the tumor is inoperable) and that he would not be touching the artery at all. If he was to only take a part of the pancreas, he would cut a little before where the artery starts and then peel the pancreas and the tumor away from the artery, only cutting the veins that feed the pancreas. He assured me he would not touch, get near, or fuck with the artery. This made me feel a little bit better... but believe me, I'm scared out of my head. And I know my entire family is scared. The look on my dad's face when we were told they may have to take the entire pancreas was one I had never seen before. As for the new lesions on my liver, the surgeon said that he would have to see once I was opened up to see if the lesions were on the surface of the liver and if they would be resectable. If not, if they are located deeper in my liver, he would not be able to remove them at that time which would mean that I'd either have to have chemo or those oral meds for Kidney Cancer I had mentioned earlier.
My pre op procedures were scheduled for this Thursday (March 17th... HAPPY ST. PATRICK'S DAY!) where I got another EKG, some blood tests, x-rays, more paperwork, instructions for the day of surgery, and I spoke with a resident surgeon who will be on my surgical team, who basically asked me a bunch of questions, had me sign some consent forms, and then answered any questions my family and I had. Basically my surgery will be anywhere from 5 - 8 hours. The OR is booked for 8 hours so we were told to expect to be there for a while. I hate that they'll have to wait that long while I'm getting worked on. I hate that all this has to happen. But as I sit here and type this in the dark as my daughter FINALLY starts to snore to my left and Matt lays here and snores to my right, I really hope that this daily pain I have in my abdomen, head, and neck go away after I have recuperated from my surgery. I know the recovery will be long and painful, but I'm really hoping that Dr. Selby's intention of having me leave the OR disease free is realized. That would be so nice. I also hope that I make it through this surgery with flying colors so that I can watch Autumn grow up, marry Matt, design some buildings and have a good life.
After surgery, I'll be in the ICU for a couple of days and then I should be in a regular hospital room for about a week. I hope I get to see Autumn while I'm in the hospital. The thought of not seeing her for a week makes me want to cry. I miss her so much when she spends a night with my parents. I couldn't imagine a whole week. I hope Spencer is ok while I'm in the hospital. I hope my mom doesn't worry too much and that my dad can be there for her and Matt and the baby when they do worry. I hope I do well in this surgery. I hope for so many things...
I have less than a week before my surgery and I feel a little lost. I'm not exactly sure how I should be feeling or what I should be doing. What are my priorities right now? How do I get right in my head that everything will be fine and think like Matt that this is "just another procedure". That I will have the surgery, recoup, and be fine. How do stay calm? How do I stop feeling so scared? Do I want to know everything that will happen in this surgery? Do I ask someone?
My head is reeling and I really should sleep. The baby will wake in about 5 hours and I have a big day at the Getty with my friend Sarah from Boston, who has come to visit. I'll write more tomorrow. Till then...
Goodnight.
To continue: I had another CT scan and an echo cardiogram plus an EKG on March 1st. The results from the CT showed that the tumor had grown about 1/2 a cm around. Because I've been having heart palpitations and chest pains I was instructed to get the echo and the EKG to make sure my heart was ok (it is). Because of the growth of the tumor, I was told my surgery was set for March 11th. Um... no go people. I told you guys I had my daughter's baptism that day. "Oh, we thought you meant for the CT." Let me ask you... if you say you're not available for a CT what in hell makes you think I'd be available for fucking SURGERY??? Reschedule that shit please. Plus, I still hadn't seen the oncologist which was set for the Monday before my daughter's baptism, March 6th.
I had all these plans to do stuff with my daughter, my friends and family before I had to have surgery. I thought I had at least 6 weeks before my surgery would be scheduled because of Medi-Cal. Apparently, I didn't need to wait. I wanted to go to Disneyland, I wanted to eat A LOT of food, I wanted to just take time and hang out with Autumn before I had to get this surgery that would basically render me unable to carry my child for at least 2 weeks to a month. So my sister was coming in the Sunday before the baptism (she is also one of her godmothers) and we were going to do Disneyland with my other two sisters, my mom and Matt. My dad couldn't go because of his back issues. Well, needless to say, I was able to go to Disneyland with my sisters and take Autumn on her first Disneyland trip. I hung out with my awesome friends during her baptism and the day after and saw some cousins I hadn't seen in a while. It was a good week.
So to get back to what I was talking about. Met with the oncologist at USC Norris Cancer center on the 6th. He basically said more of the same of what Drs. Ramos and Selby had told me. That my tumor was rare and slow growing (a good thing) and that the only way to get this thing out of me quickly would be surgery as these types of tumors are chemo resistant (the not so good thing). He did mention the two drugs that I had been told about by Gabe's mom that had been used in the treatment of Kidney Cancer that have been known to be very effective in the treatment of my type of tumor. But because my tumor is so large the best course of action would be to remove the tumor and hope that everything is basically removed in that surgery.
But wait! There's more!!!
The oncologist also dropped a bomb on me and my entire family (who was with me when I met with him. Yes, I come with an entourage now). The last CT scan showed that I had new lesions on my liver. Very small, but several of them. They are not part of the original big ass tumor I currently have. They are new lesions. Which means this thing has metastasized. Because of this one thing that was found, my status in terms of cancer stage has been reclassified as Stage 4. Apparently, when a tumor metastasizes to another organ, that puts you in the later stage. We are unsure where the lesions are (he had JUST looked at the CT briefly and found the new lesions. As of this last Monday, he has not discussed the new findings with my surgeon. More on that later.
Needless to say, to hear I now have Stage 4 cancer as opposed to the Stage 1 or 2 I had originally thought I had has shocked the shit out of me. I knew this was a possibility, but SERIOUSLY? I knew that these neuroendocrine tumors have been known to metastasize to the liver, the lymph nodes, the bones, the brain, anywhere close to the pancreas. But I didn't think it would happen that quickly. But to put it in perspective, this tumor may have been in me for YEARS before I finally felt it that day in my OB's office, which is the reason it's so damned large and I did just get diagnosed a little over a month ago. It was the 3 months before that where I was scrambling around trying to figure out what this thing was that made it seem like forever. I wonder if it has actually gone anywhere else... Anyway, I asked the oncologist what would happen as a result of the new lesions. He said he would talk to Dr. Selby (surgeon) and see if it was removable during my surgery. If not, then we would do another scan about a month and a half after my surgery to see if there was anything else left and I would probably need to have chemo or take those meds I had discussed earlier as treatment if there was still more cancer left.
After the oncologist on the 6th, I spent the rest of my week getting ready for the baptism, spending time with my daughter, my love, my family and friends in celebration of my baby (as I stated earlier). Then on Monday, it was back to Cancer Watch 2011. Had another appointment with Dr. Selby on the 14th to discuss a change in my surgery. I assumed it was about the new lesions on my liver. Matt, Autumn, my mom and dad, and Cheryl came with me to Dr. Selby's office to discuss the new surgery. First off, the surgery had already been scheduled. For March 24th. Giving me only a week and a half to get shit in order and to get right in my head for this surgery. Because to tell you all the truth, I've been terrified and crying nightly after everyone is asleep just scared of this surgery. I even found myself crying on a ride at Disneyland (Soaring over California - man what a beautiful ride). So to know that my surgery date was so close just made my mouth go dry, my heart drop to my stomach and my eyes glaze over all at the same time. I had been hoping for a little time to just hang with the baby. Get Matt situated with stuff with her... since my recovery time will be lengthy, he'll have his hands full. I wanted him to get to know her cries and her fussiness on the rare occasions when she is fussy. Because he whigs out a little when her crying becomes a little intense. Hahaa...
After discovering my surgery was going to be next week, I was told what the change in my surgery was going to be. It had nothing to do with the liver. Actually, Dr. Selby had not talked to the oncologist yet (strange, since a week had already passed and the oncologist said he'd call Dr. Selby that day which was last Monday). We were told that they would be doing a "distal pancreatectomy", where they remove the part of the body and the tail of the pancreas, but that there was a chance they would have to do a "pancreatectomy" where they remove the entire pancreas. What does that mean for me after the surgery? I become an insulin dependent diabetic (type 1) and that before I eat anything, including snacks, I would have to take enzyme pills before eating. For the rest of my life. They will not know for sure until they've opened me up and taken a look at the situation, but I needed to be informed that this would be a possibility. So there it was. Surgery scheduled. Scared shitless. I had Dr. Selby walk me through the part of the surgery that scared me the most which was the area dealing with the Superior Mesenteric Artery. He said it didn't appear as if the tumor had invaded that artery (I read that if it had, then the tumor is inoperable) and that he would not be touching the artery at all. If he was to only take a part of the pancreas, he would cut a little before where the artery starts and then peel the pancreas and the tumor away from the artery, only cutting the veins that feed the pancreas. He assured me he would not touch, get near, or fuck with the artery. This made me feel a little bit better... but believe me, I'm scared out of my head. And I know my entire family is scared. The look on my dad's face when we were told they may have to take the entire pancreas was one I had never seen before. As for the new lesions on my liver, the surgeon said that he would have to see once I was opened up to see if the lesions were on the surface of the liver and if they would be resectable. If not, if they are located deeper in my liver, he would not be able to remove them at that time which would mean that I'd either have to have chemo or those oral meds for Kidney Cancer I had mentioned earlier.
My pre op procedures were scheduled for this Thursday (March 17th... HAPPY ST. PATRICK'S DAY!) where I got another EKG, some blood tests, x-rays, more paperwork, instructions for the day of surgery, and I spoke with a resident surgeon who will be on my surgical team, who basically asked me a bunch of questions, had me sign some consent forms, and then answered any questions my family and I had. Basically my surgery will be anywhere from 5 - 8 hours. The OR is booked for 8 hours so we were told to expect to be there for a while. I hate that they'll have to wait that long while I'm getting worked on. I hate that all this has to happen. But as I sit here and type this in the dark as my daughter FINALLY starts to snore to my left and Matt lays here and snores to my right, I really hope that this daily pain I have in my abdomen, head, and neck go away after I have recuperated from my surgery. I know the recovery will be long and painful, but I'm really hoping that Dr. Selby's intention of having me leave the OR disease free is realized. That would be so nice. I also hope that I make it through this surgery with flying colors so that I can watch Autumn grow up, marry Matt, design some buildings and have a good life.
After surgery, I'll be in the ICU for a couple of days and then I should be in a regular hospital room for about a week. I hope I get to see Autumn while I'm in the hospital. The thought of not seeing her for a week makes me want to cry. I miss her so much when she spends a night with my parents. I couldn't imagine a whole week. I hope Spencer is ok while I'm in the hospital. I hope my mom doesn't worry too much and that my dad can be there for her and Matt and the baby when they do worry. I hope I do well in this surgery. I hope for so many things...
I have less than a week before my surgery and I feel a little lost. I'm not exactly sure how I should be feeling or what I should be doing. What are my priorities right now? How do I get right in my head that everything will be fine and think like Matt that this is "just another procedure". That I will have the surgery, recoup, and be fine. How do stay calm? How do I stop feeling so scared? Do I want to know everything that will happen in this surgery? Do I ask someone?
My head is reeling and I really should sleep. The baby will wake in about 5 hours and I have a big day at the Getty with my friend Sarah from Boston, who has come to visit. I'll write more tomorrow. Till then...
Goodnight.
Thursday, March 17, 2011
What's Up Doc? (aka The Second Opinion) Originally started/written 2.21.10
Aw crap... do I need to pay Warner Brothers Cartoons for the use of that phrase? Oh well...
Sorry it's taken me a while to post this next blog. Typing has become a touch difficult lately so it takes a little longer than usual for me to type. That and also dealing with an infant who may potentially be at the starting gate for teething, I kind of have to walk away from the blog for a bit every now and then.
I know you guys have been wondering how my appointment with the "Second Opinion" doctor went last Friday. I know this because I've gotten the texts, emails, calls, etc. I kind of had to process what he told me and also, I needed a couple of days where I wasn't thinking about what he had told me. Well, that didn't happen. My situation is always on my brain now, no matter how hard I try to "relax and take it easy". It has started to infiltrate my dreams. I have weird crazy dreams that I only half remember when I wake but I know they're nuts.
First off, to answer everyone's question: I'm doing fine. Thank you. Well, as fine as I can be for someone who has a tumor in her body. This is what I deal with every day now... I'm realizing that now I'm dealing with a constant pain on my left side close to where the tumor is, there is a constant throbbing in the area of the tumor (I can only guess it's the artery the tumor is wrapped around), I have a headache and backache that doesn't seem to go away no matter how much Tylenol or Aleve I pop (and believe me, it's a lot), and I'm so tired now that I feel like I've been shot up with a serious load of quaaludes (not even a nap helps because I'm still tired after waking and there are days when I can't even wake up in the morning). It makes taking care of the baby and reading/learning about my specific type of pancreatic cancer a challenge. Other than that, I'm in pretty good spirits and I'm just trying to find some good in this piece of shit situation I have found myself in. Here's something... you know how they say that your feet get bigger when you're pregnant and they never go back to their regular size so you might as well buy new shoes? Not for me! I am still a size 7 1/2 - 8! Woo hoo!
Ok, now down to the nitty gritty: The Second Opinion.
Saw a Dr. R. Selby at USC University Hospital. He has an astounding CV and came highly recommended to me by the last vascular surgeon who diagnosed me. He told me that if he had the same thing he would go to this guy. Great. Enough said. Let's talk to him.
In a nutshell: He'd like me to go under the knife as well. Here's the kicker: He agreed that my pancreas would need to be chopped up (for lack of a better term) he didn't think it would be as drastic as Dr. Ramos (who referred me to him) thought. He feels that he can leave a healthy amount of pancreas which would mean that possibly I would not be insulin dependent. He also thinks that he would only need to remove, at most, 10% of my liver. Which is good. Less chance of liver failure. But he also dropped a bomb on me. I would also be losing my spleen, possibly my left adrenal gland, and depending on if the tumor has infiltrated my stomach or not, a portion of the back part of my stomach (better than the lapband?).
That's a lot of stuff. I need time to figure this crap out. And I also asked to see an oncologist, because I haven't talked to a doctor who specializes in cancer yet! So I have an appointment with an oncologist at the USC Norris Cancer Center and these peeps over here are going to just go ahead and schedule my surgery and let me know. The Bean gets baptized on the 11th and I'm hoping I have a month or so before I have to have this surgery. It still scares the bejeezus out of me especially because of that deal with the major artery that's involved. I guess we'll see...
Sorry for not posting this up as soon as when I had written it originally. I was in mommy mode and also I really needed to figure out what I wanted to do about this surgery vs alternatives to surgery. Now that I know what is going to happen, I'll be writing a new blog on that right now and post it tomorrow. So as soon as I have time this coming week, I'll try to make the blog a daily occurance if possible. I have a lot going on this upcoming week... I'll explain in the next blog.
Sorry it's taken me a while to post this next blog. Typing has become a touch difficult lately so it takes a little longer than usual for me to type. That and also dealing with an infant who may potentially be at the starting gate for teething, I kind of have to walk away from the blog for a bit every now and then.
I know you guys have been wondering how my appointment with the "Second Opinion" doctor went last Friday. I know this because I've gotten the texts, emails, calls, etc. I kind of had to process what he told me and also, I needed a couple of days where I wasn't thinking about what he had told me. Well, that didn't happen. My situation is always on my brain now, no matter how hard I try to "relax and take it easy". It has started to infiltrate my dreams. I have weird crazy dreams that I only half remember when I wake but I know they're nuts.
First off, to answer everyone's question: I'm doing fine. Thank you. Well, as fine as I can be for someone who has a tumor in her body. This is what I deal with every day now... I'm realizing that now I'm dealing with a constant pain on my left side close to where the tumor is, there is a constant throbbing in the area of the tumor (I can only guess it's the artery the tumor is wrapped around), I have a headache and backache that doesn't seem to go away no matter how much Tylenol or Aleve I pop (and believe me, it's a lot), and I'm so tired now that I feel like I've been shot up with a serious load of quaaludes (not even a nap helps because I'm still tired after waking and there are days when I can't even wake up in the morning). It makes taking care of the baby and reading/learning about my specific type of pancreatic cancer a challenge. Other than that, I'm in pretty good spirits and I'm just trying to find some good in this piece of shit situation I have found myself in. Here's something... you know how they say that your feet get bigger when you're pregnant and they never go back to their regular size so you might as well buy new shoes? Not for me! I am still a size 7 1/2 - 8! Woo hoo!
Ok, now down to the nitty gritty: The Second Opinion.
Saw a Dr. R. Selby at USC University Hospital. He has an astounding CV and came highly recommended to me by the last vascular surgeon who diagnosed me. He told me that if he had the same thing he would go to this guy. Great. Enough said. Let's talk to him.
In a nutshell: He'd like me to go under the knife as well. Here's the kicker: He agreed that my pancreas would need to be chopped up (for lack of a better term) he didn't think it would be as drastic as Dr. Ramos (who referred me to him) thought. He feels that he can leave a healthy amount of pancreas which would mean that possibly I would not be insulin dependent. He also thinks that he would only need to remove, at most, 10% of my liver. Which is good. Less chance of liver failure. But he also dropped a bomb on me. I would also be losing my spleen, possibly my left adrenal gland, and depending on if the tumor has infiltrated my stomach or not, a portion of the back part of my stomach (better than the lapband?).
That's a lot of stuff. I need time to figure this crap out. And I also asked to see an oncologist, because I haven't talked to a doctor who specializes in cancer yet! So I have an appointment with an oncologist at the USC Norris Cancer Center and these peeps over here are going to just go ahead and schedule my surgery and let me know. The Bean gets baptized on the 11th and I'm hoping I have a month or so before I have to have this surgery. It still scares the bejeezus out of me especially because of that deal with the major artery that's involved. I guess we'll see...
Sorry for not posting this up as soon as when I had written it originally. I was in mommy mode and also I really needed to figure out what I wanted to do about this surgery vs alternatives to surgery. Now that I know what is going to happen, I'll be writing a new blog on that right now and post it tomorrow. So as soon as I have time this coming week, I'll try to make the blog a daily occurance if possible. I have a lot going on this upcoming week... I'll explain in the next blog.
Wednesday, February 16, 2011
Cancer Cooties
I haven't really gone around telling everyone I have "The Cancer". That was the main reason I wrote "The Game of Life" post. But what I find a little humorous is the reaction of those people who hear I have The Cancer and then disappear off the face of the earth. Even though they tell others, "Tell her I said that if she needs anything at all, just call.". Well, jeez... why not just call me and tell me that?
I feel like I have cooties. Cancer Cooties. And the Cancer Cooties are making others afraid to just call because they think they can either kill me through the phone or get The Cancer through phonemosis (yes, I said Phonemosis - think osmosis but through the phone). I'm still the same person. I just have a ginormous tumor growing in my pancreas and liver. What can you do for me? Call me when you feel like calling. Don't stay away because you don't know what to say. Want me to tell you what to say? Say this: "Kick that goddamned cancer in the fucking ass." That's it. And I'll do it too.
So after a week of thinking about it, and also realizing that I have a shitload of people to tell, I decided to just post some stuff on Facebook and let everyone know that this is why I've either forgotten to call, didn't pick up the phone when they called, or just plain didn't call back because I never know what to say now when someone who doesn't know asks me, "How are you doing?". Lately, I've just been blurting it out like this:
Person Who Doesn't Know:
So how have you been? Anything new?
Me:
Meh... I'm ok. New? Well, I have cancer. How are you???
Not too smooth.
So now that I've put it out there, I can now say, "I have pains, I'm tired, I'm scared of this surgery. But hey... look at all this weight I've lost!" Hey... you've got to have a sense of humor about this shit and instead of crying all the time (I'll be honest, I have cried quite a bit), I want to able to laugh despite this shit that's going down. I'm gonna fight and I need all the support I can get. So don't tell me "stop talking like that" when I joke about being able to get VIP parking because I'll be able to get a handicap placard now that I'll be getting chemo after the surgery (at least I think so, anyway). Let me have a giggle. I'm laughing at myself... that's a good thing. And it stops making everything so "heavy". You dig?
Oh and by the way... despite the pain... I'm in good spirits. Thanks for asking.
I feel like I have cooties. Cancer Cooties. And the Cancer Cooties are making others afraid to just call because they think they can either kill me through the phone or get The Cancer through phonemosis (yes, I said Phonemosis - think osmosis but through the phone). I'm still the same person. I just have a ginormous tumor growing in my pancreas and liver. What can you do for me? Call me when you feel like calling. Don't stay away because you don't know what to say. Want me to tell you what to say? Say this: "Kick that goddamned cancer in the fucking ass." That's it. And I'll do it too.
So after a week of thinking about it, and also realizing that I have a shitload of people to tell, I decided to just post some stuff on Facebook and let everyone know that this is why I've either forgotten to call, didn't pick up the phone when they called, or just plain didn't call back because I never know what to say now when someone who doesn't know asks me, "How are you doing?". Lately, I've just been blurting it out like this:
Person Who Doesn't Know:
So how have you been? Anything new?
Me:
Meh... I'm ok. New? Well, I have cancer. How are you???
Not too smooth.
So now that I've put it out there, I can now say, "I have pains, I'm tired, I'm scared of this surgery. But hey... look at all this weight I've lost!" Hey... you've got to have a sense of humor about this shit and instead of crying all the time (I'll be honest, I have cried quite a bit), I want to able to laugh despite this shit that's going down. I'm gonna fight and I need all the support I can get. So don't tell me "stop talking like that" when I joke about being able to get VIP parking because I'll be able to get a handicap placard now that I'll be getting chemo after the surgery (at least I think so, anyway). Let me have a giggle. I'm laughing at myself... that's a good thing. And it stops making everything so "heavy". You dig?
Oh and by the way... despite the pain... I'm in good spirits. Thanks for asking.
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