A few days after my appointment, where Dr P told me that I would not be doing chemo anymore, I got a phone call from Dr Seery's office at UCI. They made my appointment for March 5th. I was so excited because that gave me time to live a little bit before our next step in our cancer journey. Then the nurse who was booking the appointment said, "Oh no! I just saw that your dr put a rush on this! I will need to call you back and make an appointment for a sooner date." I said, "Let me talk to my dr first! Maybe the 5th will be ok with him! I have so much I was to do before I start at UCI! I think he will say it will be ok to keep this date!" She agreed and told me that she was leaving it to me to change the appointment if he wants a sooner date! Well, thankfully, Dr P said that the March 5th appointment was just fine! YAY!! It's the little miracles, where things just work out like they are supposed to, where you really see God's fingerprints! I have learned to stop looking for these, "PART THE RED SEAS", miracles. (Not that those are not important too) But when I really feel like God's hand is on me, is when its just the little things that would only matter to me and seem so insignificant to other's, that I know my God is still walking with me!
So being off chemo this time is a little different than the other times. I don't really feel like I have been off chemo for over a month! Usually by now, I am feeling almost normal. As of tonight, I still feel like the poison is running thru my veins. I don't have the "vacation" that I usually have, it kind of worries me, but then again, I just had my CT scan a little over a month ago and there was only a slight growth. Maybe I am just pushing myself harder than normal. Jon and I had decided that we would not live like I have cancer for the time that I am off chemo! We would live life to the fullest and keep making as many memories with our kids as we can! For Christmas, Jon's sister in law Angie, got her father to get us 2 tickets to Disneyland and sign 3 of us into Disneyland! (If you know me, this is the BEST Christmas gift in the world! My personal heaven would be DISNEYLAND!) So on Josiah's 11th birthday (Feb 12th) we surprised the kids and took them to Disneyland for the day! I got a wheelchair because I knew there was no way I could walk around Disneyland all day! I was worried I was going to embarrass the boys, but they didn't even bat an eye! This was our first trip to Disneyland that the kids were all tall enough to go on the big kid rides! So this was the first trip that I was not sitting at the exit of Star Tours or Big Thunder Mountain, with a stroller filled with a crabby baby! It was the absolute BEST Disneyland trip we have gone on as a family!
Then on the 17th of February, Jon and I celebrated our 14th wedding anniversary! IT WAS AMAZING!!! Jon and I went to dinner that night at Red Lobster. Then we picked up the kids. Jon bought a top tier of a wedding cake, decorated in our wedding colors and in one of the flavors that our wedding cake had! (Chocolate cake with raspberry filling) Then he had dug around our storage unit for hours earlier that day and he found our wedding video! We had to borrow a VCR from our neighbors, but after we cut the cake and ate the cake with the kids and my parents, we all sat down to watch our video (this was the kids and my parents first time seeing it!) It was beautiful!! The kids were stuck to it like glue! Remarking how young (and thin) everyone looked. It was the most romantic anniversary we have ever celebrated! But it doesn't stop there! We decided to go to Las Vegas to continue or celebration. Jon and I left on Wednesday the 25th and then on Friday the 27th, my parents came up and brought the kids with them! It was a great trip! We all had a blast and really needed that time away. We knew our "cancer vacation" was coming to a close and quickly! On Saturday night (the 28th), I laid in bed, wide awake. Looking at my husband and children and cried (quietly) my eyes out! It is so hard to not think, "This is the last night we will ever be in Las Vegas together ever again!" I try really hard not to let the enemy take my joy, but it is getting harder and harder with each day that passes! I remember driving out of Disneyland's parking structure and the tears just came out of nowhere! I try not to let anyone see, but that time, Jon reached over and squeezed my hand, letting me know he was feeling it too!
So March 5th came sooner than I would have liked it! I had been literally shaking for a full 24 hours before my appointment! I kept complaining to Jon, "I don't want to go!! Don't make me do this! Let's keep living like I have no cancer!" Of course being the amazing husband he is, he kept telling me, "We don't have to do anything you don't want to do! If you don't want to do clinical trials, we won't!!! We will walk out and live out the rest of our life together! But, I think it is worth it to just hear what they have to offer." UGH!!! FINE!!! We left for UCI at 2pm, giving us 30 minutes for traffic and to get lost. Well, we pulled right up! Found the cancer building right away. We waited outside for my best friend, Kira, to meet us there. She is good at hearing the good, bad and the ugly and make notes of it all!
So we all go in, all shaking in our boots! We go up to the 2nd floor, check in and I fill out a few new patient forms, when we get called back. We all go into a exam room. There is a nurse who takes my vitals and starts filling in my information into the computer. She puts in all my vitals, asked me questions like if I smoke, drink, etc.. Then she asks to list my medications. HOLY COW! So I start off with my pain meds, around the 4th med, she looked at me and said, is that all? Jon and I looked at her and started laughing and said, "Oh no! We are just getting started!" It took us literally 15 minutes to list everything I take on a daily basis! The nurse's head was spinning! Dr Seery's assistant tried 2 different times to come in and we were not done yet! We finally just said, "You have the just of them! We are good now!" The nurse started laughing and said, "I don't even know how you function!!" Ya! Neither do I lady!! So she leaves and the assistant comes in! He introduces himself and says, "Don't worry about telling me anything, I have studied you and know your entire history!" He knew it all without even looking at notes! He knew dates of surgeries, he knew the date I was diagnosed and how I was diagnosed... It was quite impressive! So he starts telling us the plan of attack. He said that Dr Seery would be in, in a few minutes and answer any questions we had about anything! He said that there is a drug that is FDA approved, called Stivarga. (Jon and I had heard of it 2 years ago, when it was first FDA approved, from Dr P. He told us there was a new drug that was just approved and it was sort of a "super Avastin" and he thought I would be a great candidate for it since I responded so well to Avastin.) I said, "This is the drug that is sort of a "super Avastin" correct?" and he said, it was from the same family. He said it was kind of like Avastin, in that it cuts off the blood supply to the tumors, therefore not feeding the tumors and they stop growing. The down side is the side effects! THEY ARE MONSTERS! Most people have to stop taking the Stivarga because the side effects are too much to handle and ruining their quality of life. Other than the normal, vomiting, hair loss, feel crummy side effects. The worst side effects tear up the palms of your hands and the bottoms of your feet. Pretty much the drug causes discoloration, boils, cracks, peeling, bleeding, etc... on the palms of your hands and the bottom of your feet. The same side effect as the drug Xeloda, I had been on for over a year and all it did was cause discoloration to my hands and feet. People described them as looking like I had been reading a newspaper and the print was still on my hands. They never cracked, peeled or bled! I would slather them in a body butter from Posh (of course) that was a shea butter based lotion and also would rub Posh's, Healer Stick (100% shea butter stick) all over them constantly! So I felt confident that I was going to be just fine! I had Posh on my side! He looked at me like, I don't think so! He said, "These side effects are REALLY, REALLY BAD!! Most people can not stay on the drug and the people who do stay on it, have a lot of the side effects and just live with it!" I was feeling discouraged! But then he said, "We also have another card in our hands to play! We will study your cancer and try to find a mutation. No 2 cancers are the same, that is why not all chemo's work for every person! They have mutations in each of the cancers that make them all different. So we will look for a mutation that is not only in your colon cancer but in a different type of cancer, say, Kidney cancer, Then we will use the chemo that was actually made for kidney cancer to try and kill your cancer which has that same mutation!" I started feeling something I hadn't felt in a long time HOPE!!!! It was a BEAUTIFUL feeling!! Here I was, begging Jon to not make me go and this guy is actually talking to me like we are going to attack this cancer finally! It was amazing!! So then he said, "After that we will look into clinical trials!"
So then Dr Seery came in! NOT AT ALL WHAT I WAS PICTURING! She was this young, beautiful, blonde woman, who looked like someone I would hang out with! She introduced herself and shook our hands. She started off by saying how good I looked and that she was kind of wondering why my dr would send me to her! She repeated everything that her assistant had said about our course of action. She then said that the normal dose of the Stivarga was 160mgs. But she is going to recommend that my dr start at 80mgs and slowly increase from there. She said that they have had WAY better success in people tolerating the side effects that way. She also said that unlike other cancer drugs/chemo's, we would know within the first week of taking Stivarga, if the side effects are going to be tolerable or not. She said the side effects hit hard and fast with this drug. She asked if there were any questions. Kira asked, "How long can a person be on Stivarga?" She said, "Great question!! As long as the person can tolerate it! There was a woman, who is right down the hall right now, who was in really bad shape! I didn't think she had a chance! But we put her on Stivarga, that was over a YEAR ago and she just got back from a vacation out of the country!!!" We just sat there staring at each other with our mouths hanging wide opened!! A YEAR??? Here I was thinking I had maybe a couple months left!! HOPE!!! HOPE!!!!! HOPE!!!!!!
Then she went into the whole mutation thing. Saying how they would test my tumor and study it to find a mutation that is in a different cancer. She then said, "So when you are getting biopsied, tell them you need 3 cores!!! Usually what happens is they don't get enough and you have to repeat the procedure!" I looked at her and said, "WHAT???!!! They already have my tumor! They kept it when my colon blew in 2011! She said, "That was YEARS ago! It has probably mutated since then!" I said, "So, like a liver biopsy?" Dr Seery said, "Yes probably" I said, "NOPE!! I AM NOT DOING IT!! So you all better PRAY this Stivarga works because I will NOT be doing another liver biopsy! I have already said I would never do it again!" THEY ARE HORRIBLE!! I can not even imagine doing one again! Not to mention, they can't even put you to sleep because they need you to hold your breath and release it at certain times! It is HORRIBLE!!! So please please please pray the Stivarga works for me!!!
After that fiasco, she told me she wants to refer me to her genetic counselor. They think there may be a link between my mom's Neurofibromitosis and the colon cancer. She also said that doing this testing will also make sure my kids don't fall thru the cracks and miss getting tested for colon cancer. She said that the "old" rule of thumb was to have the kids tested 10 years before my diagnosis, which would make them 23 years old when they have their first Colonoscopy. But she says she is pretty sure her genetic counselor will have them tested before 23! She said the genetic testing would be done there at UCI and it would only benefit my kids and future family members by doing this! So of course, this is not an option, I will be doing it! (unless it involves a liver biopsy! LOL!)
So after going over everything with her, she told us that there actually was not a clinical trial there at UCI that would fit my needs! Which was a complete bummer because I LOVED HER!! I would LOVE for her to be my dr from here on out! She said she was sending me back to Dr P, then she said, "I am actually a little confused on why he sent you to me in the first place! You are no where NEAR clinical trials!" and said she would call him tomorrow with her recommendations on what to do with me now!
Next step is going to see my dr back at St Jude. I have an appt with him on Monday and we will go over what we will be doing next. I do want to take another 2 weeks off before starting any new drugs. I just want to make sure all the other chemo's and drugs are out of my system because Dr Seery said that the Stivarga's side effects will be amplified if I still have Xeloda or CPT-11 in my system! So I don't want to risk that AT ALL!
WE HAVE HOPE!!! We always have HOPE with Christ, but sometimes when you are in the fire, you just plain forget!! Keep praying, He is listening! I love you all!!
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