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...