Well I am so thankful last week is over! Thank you for all the thoughts, prayers and visits from everyone! They really kept me going! So I am going to start from last Monday! UGH!! I don't even want to remember last Monday, let alone write about it! LOL!
April 16th~April 17th~I wake up and realize this is the start of it all! The week I had both been looking forward to and dreading all at the same time! I am going to finally be free of this bag and everything that comes with it, but I have to go through so much pain and suffering to just to be normal again! I had times that I thought, "I can live with this, it isn't so bad!" Then reality would hit, like when I am at the Discovery Science Center with my family as one of our last outings together before the surgery. I end up leaking everywhere and we had only been there for an hour. I had no extra clothes and I was trapped inside a tiny bathroom stall and didn't know what to do. So, I pulled up my big girl panties and ran out of there as red faced as all get out!! I found my family and off we went. That's when I realized, I can't do this forever! So for 2 days I had nothing to eat. I had to drink 4 bottles of Magnesium Citrate and I had to take 8 Ducolax laxatives and, the fun part, 2 enemas!! Despite my 2 year old trying to shove a yummy, chocolaty, delicious Oreo in my face numerous times and smelling dinner as it cooks, I DID IT!!! The prep was over!!!!
April 18th~ D DAY!!!! It's here, the day I had been waiting for since my first surgery in October!! For fasting and giving myself the stomach flu for 2 days, I was actually feeling good! My spirits were up and I wasn't as tired as I thought I would be. That morning, my sister, Betsy and her family were all there and Shayla and Aaron were there. (My cousin and her 1 year old son) I had to be there at 11:30am and surgery would be 2 hours after that. So at 11:10am, we all gathered around and prayed. That's when it all started becoming real to me. After we were done praying, Jon said we had to leave. I turned to hug Shayla goodbye, because she couldn't make it to the surgery, and I lost it. I couldn't help but to cry and think, this could be the last time I see her again! Looking back now I think, "DRAMA!!!" But I was super tired and hadn't had food for 3 days at this point.
So we get to the hospital, and as always, take it over!! Most people have about 3 visitors waiting for them during surgery, I had about 15 people!! I have such a great support system. So right after I check into the hospital, we have to wait outside the waiting room because there were too many of us. As we were all waiting by the elevators, for the nurse to call me back, Dr D (my surgeon) came up to talk with us. He asked if I had any questions and he was just very calm. The funniest part was when my 3 year old nephew, Noah, ran up to my surgeon, head butted him in the "special place" and spit water on his shoes!! I really needed that laugh at that point!!! My surgeon just looked up and said, "You really need to get someone in here to clean that up!" and he laughed, then left. A few minutes later, the nurse came to take me back. We all got in a circle to pray and my nurse took my hand!!! She looked at me and said, "I am going to pray for you too!" At that moment, I just had a peace come over me. I wasn't shaking, or scared anymore! I knew this was all in God's hands. He wanted me, "bag less" and I am going to be!! I was told, when my colon ruptured, that when they put the colostomy in, it was going to be permanent! But, God had other plans!!
The nurse takes me back and I am alone for the first time in a couple of days! It was great quiet time with God. I just prayed and thanked Him and talked to Him for a long time. They were going to call my family back 2 at a time before the surgery, but after I got dressed, TOOK A PREGNANCY TEST (HA HA HA!!) and got the IV started. So that time, just me and God was blissful!! I was so comfortable and peaceful. Well, if you know my family, THEY DON'T FOLLOW THE RULES.... EVER!! The nurse said she was going to go get my husband after she started my IV. Well, according to my family, they took too long!!! So here comes Jon, the nurse and I just look at each other. I said, "Is everything ok?" He said, "Ya! Your family made me come back here because it was taking too long!" Yep!! We are THAT family!! LOL!! But we get results!! So Jon was there while she started my IV. She got it on the first try!!! We both prayed for that! (Yes! She prayed again for me!) Then my sister, mom and Nathaniel came back to see me! As soon as they got there, we got word that they were ready for me. The next thing I knew, they were wheeling me back to the operating room!
After the surgery was over I was in EXTREME pain!!! The kind of pain where you can't catch a breath! I thought for sure, my insides were on the outside! I begged for pain killers and the nurse told me no because he said I would stop breathing! I promised him that I wouldn't stop! Little by little, he would give me 1mg of Dilaudid. Finally after about 3 or 4 mg's, it took the edge off. So after an hour of being in recovery, I was taken to my room. Then I realized, it is not a private room!! Luckily my roomie had as big of a family as I did. So there would be no complaining in that department. But, she didn't have a secret weapon that I did! JON'S SNORING!! That poor lady, just got out of surgery, was hoping for a good nights sleep. NOPE!!! I feel so bad for her!
April 19th~ So at about 7am, Dr. D comes in to check on me. Literally, the first words out of his mouth is, "You didn't get a private room? This is not going to work because, 1. Your family does not obey the rules and will not stick to only 2 visitors at a time and 2. He (pointing to Jon) doesn't leave your side and he snores too loud to have a room mate!" Then he told us to wait a minute, then he comes back and says, "OK got you your own room!" It was that easy!! So we talked for a couple minutes and then he left. A few seconds later, the charge nurse comes in and says, "Dr. D said he wanted you in your own room, so we are fixing one now for you!" That man has some power up in that hospital.
April 20-22nd~ These days consisted of starting "sips of liquids" on Friday, walking the halls, trying to pass gas and go #2! Well, by Friday I had achieved all the goals! By Sunday afternoon I was FINALLY eating a "soft diet" and was ready to go home. Dr D wanted me to stay another day, but I had already told the kids I would be home. I couldn't freak them out by not going home. The problem was, we didn't have a pain management regiment set up for when I go home. So when the pain management Dr showed up at around 1:30pm, I told her that I thought 4mg of Dilaudid every 4 hours and then 30 mg of Morphine every 12 hours on top of that should be OK. So, out went my beloved IV and the wonderful drugs that went with it!! I was on my way home!
April 23rd~Woke up this morning in TERRIBLE pain!! Not as bad as when I was in recovery, but close. We had slept through the alarm to take my pills! Boy did I learn my lesson!! Today started my "boot camp" back to health! Here is my schedule, (That I actually stuck to) I am still on a soft solids diet. So we bought enough food to get us through this week. I am eating 6 snacks instead of 3 meals. A snack for example is a yogurt and a string cheese. Every 2 hours, I walk up and down my street. But, in between time, I rest and try not to push it. I refuse to take 2 months to heal this time around!! My goal for this week is to not need a wheel chair for Friday's Dr appointment.
Again, Thank you all for your help with the kids, visiting me in the hospital, bringing food and of course your prayers!! You all mean so much to me and I am ready to have this colostomy bag far behind me!! Love you all!!
Monday, April 23, 2012
Thursday, March 22, 2012
Praise report!!
I AM GETTING MY REVERSAL SURGERY!!! I got a call on Monday, March 12th saying that Dr Panares (my oncologist) wanted me to do a PET Scan ASAP!! I asked why when I just had a CT Scan. The receptionist said she would have Dr P call me back and answer all my questions. He called back and told me that Dr. D (my surgeon) said he would do my surgery, but only if the PET Scan comes back clear of any cancer, disease and my intestines are healthy and strong enough to handle the surgery. He also said I couldn't be around pregnant people or children for 6 hours after being injected with the radioactive material for the scan. So we decided it was time to enroll Caylee in preschool. We were already kicking around the idea because my mom needs a break, especially on the days I have chemo and I am not feeling good.
March 15th~ Day of my scan and the first day of Caylee's preschool. Jon dropped her off early in the morning because we had to be at St Jude at 7:30am! He said she did really good and didn't even cry!! I was so worried! So, we get there and we only waited a few minutes when they called me back. I went back and they had me sit in a big recliner. Jon came back with me and stayed as long as they would let him. So then they accessed my port and injected me with the radioactive material. They made Jon leave and I had to lay still for an hour while the stuff went thru me and attached itself to the active cancer cells. They I went into a room and they put me in the machine. It was a long tube that had the ends opened (like a toilet paper roll) and I was in it for 45 minutes. Jon got to sit at the end of the tube while I was in there. We weren't allowed to talk until the last 20 minutes. Finally it was over and we left.
March 16th~ I got a call from my oncologist's office saying that I was being referred back to the surgeon!!!! I figured that meant the PET Scan came back clear! They made the appt for Monday the 19th!
March 19th~ I went to my appt with Dr D! He came in and talked about the surgery and what the surgery entails. I then asked him if he could go over the PET Scan results because no one read them to me. As he was reading them over to himself, I said, "OH NO!! Don't tell me, I have cancer!!!" He just rolled his eyes at me, I thought it was funny!! LOL!! So he continued reading the scan and said, "You know about the cancer in your lungs, there is also cancer in your liver, you know that." Then I said, "Yes, and I know about the cancer in my bladder." Then he said, "YOU DON'T HAVE CANCER IN YOUR BLADDER!!" I couldn't believe it!! So he read straight from the report. It said that there was an abnormality in my abdomen in front of my bladder that was from the first surgery. He said it was probably a hematoma and he would remove it during this surgery! GOD IS SO GOOD!!!! Even though they found another spot on my liver, I was mostly upset that it had spread to another organ. But, it didn't!!!!! God is healing me 1 organ at a time. I just have to be patient! Something I still need to learn!
So my surgery is scheduled for April 18th at 1:30pm. I have to get there 2 hours early. The bad part is, the 2 days before my surgery I have to do the prep. They are making me do the same prep as a coloscopy for 2 days in a row. So nothing but clear liquids for 2 days and 4 bottles of Magnesium Citrate!!! I honestly don't know if I can do it. It is hard enough to only do 1 day and 2 bottles! So please pray I can get thru those days. Then for the surgery to not even be until 1:30! I am going to be a zombie!! But, there IS good news..... NO CHEMO UNTIL AT LEAST 2 WEEKS AFTER SURGERY!!! Yay!! I am so happy to get a break!!
Remember keep praying because God is listening AND answering our prayers!!!!!!!!
March 15th~ Day of my scan and the first day of Caylee's preschool. Jon dropped her off early in the morning because we had to be at St Jude at 7:30am! He said she did really good and didn't even cry!! I was so worried! So, we get there and we only waited a few minutes when they called me back. I went back and they had me sit in a big recliner. Jon came back with me and stayed as long as they would let him. So then they accessed my port and injected me with the radioactive material. They made Jon leave and I had to lay still for an hour while the stuff went thru me and attached itself to the active cancer cells. They I went into a room and they put me in the machine. It was a long tube that had the ends opened (like a toilet paper roll) and I was in it for 45 minutes. Jon got to sit at the end of the tube while I was in there. We weren't allowed to talk until the last 20 minutes. Finally it was over and we left.
March 16th~ I got a call from my oncologist's office saying that I was being referred back to the surgeon!!!! I figured that meant the PET Scan came back clear! They made the appt for Monday the 19th!
March 19th~ I went to my appt with Dr D! He came in and talked about the surgery and what the surgery entails. I then asked him if he could go over the PET Scan results because no one read them to me. As he was reading them over to himself, I said, "OH NO!! Don't tell me, I have cancer!!!" He just rolled his eyes at me, I thought it was funny!! LOL!! So he continued reading the scan and said, "You know about the cancer in your lungs, there is also cancer in your liver, you know that." Then I said, "Yes, and I know about the cancer in my bladder." Then he said, "YOU DON'T HAVE CANCER IN YOUR BLADDER!!" I couldn't believe it!! So he read straight from the report. It said that there was an abnormality in my abdomen in front of my bladder that was from the first surgery. He said it was probably a hematoma and he would remove it during this surgery! GOD IS SO GOOD!!!! Even though they found another spot on my liver, I was mostly upset that it had spread to another organ. But, it didn't!!!!! God is healing me 1 organ at a time. I just have to be patient! Something I still need to learn!
So my surgery is scheduled for April 18th at 1:30pm. I have to get there 2 hours early. The bad part is, the 2 days before my surgery I have to do the prep. They are making me do the same prep as a coloscopy for 2 days in a row. So nothing but clear liquids for 2 days and 4 bottles of Magnesium Citrate!!! I honestly don't know if I can do it. It is hard enough to only do 1 day and 2 bottles! So please pray I can get thru those days. Then for the surgery to not even be until 1:30! I am going to be a zombie!! But, there IS good news..... NO CHEMO UNTIL AT LEAST 2 WEEKS AFTER SURGERY!!! Yay!! I am so happy to get a break!!
Remember keep praying because God is listening AND answering our prayers!!!!!!!!
Monday, March 12, 2012
INFO OVERLOAD!!!
IT'S COLON CANCER AWARENESS MONTH!! GO GET CHECKED!! my family has!!!
I don't even know where to start!! The last 2 weeks have been a whirlwind of emotion and exhaustion! Let's start from the beginning!
March 1st~ We headed up to Victorville at 5:30 am, to be there for my sister and Darren while she had her colonoscopy to check for Colon cancer. Nothing like watching your sister suffer thru a horrible day and night because YOU have cancer that she may have because it is hereditary! My brother has already had his colonoscopy (he really didn't want company for his, but my mom and dad were there for him anyways, I gave him his space he wanted!), and PRAISE THE LORD HE WAS CLEAR!! He did have 2 polyps removed that potentially could have turned into cancer, but they are gone now! Both my sister and brother have to have colonoscopies every 5 years for the rest of their lives. My kids have to start getting them at 23 yrs old and will continue to have to have them every 5 years also. My cousins, aunts, uncle and mom are all at risk too! I can not stress enough to them about getting their colonoscopies done to prevent what happened to me from happening to them!! Back to the story! We got there and went to the outpatient surgery offices where they do the colonoscopy. We sat for what seemed forever for them to call her back!! They finally call her back and she is gone for a LONG time. Finally the nurse came out and called Darren to go back with her, I noticed she was holding a picture of my sister's insides! I FLIPPED!! That is what they had to show me my tumor and that's how I was told it was colon cancer! I looked at my mom and seriously almost lost it!! I thought for sure she had cancer! The next few minutes seemed like hours! Finally I get a text from Darren, "NO CANCER, NO POLYPS, PRAISE GOD!!!" I was so relieved!! Darren came out and said that my mom could go back to see her! I have never seen Darren look so light in all my life, he was so happy and relieved!! He started texting right away and I called to let my dad know! I just want to take this moment to really Praise our Lord!! He kept my brother and sister safe! I just couldn't imagine having to do this with one of them! It would be too much! I already have so much guilt about them having to get colonoscopies every 5 yrs! But, that was a good day for our family!! I was so happy!!
March 2nd~ MY TURN!! I had a CT Scan at 1:30pm. We went in and waited for me to drink my 2 cups of Barium, then, I went back. I did so good!! I didn't even cry (I usually cry out of I guess fear during the CT Scans) Jon went back there with me and right away they set me up to access my port for the contrast. It only took the nurse 3 slow, painful pokes to finally get it in the right place!!!! I almost cried then! So I laid down on the table and we started! They let Jon in to see me in the middle of the scan while they were hooking up the contrast and stuff! They were really nice! 30 minutes in the machine and I was done! They told me that the doctor would have the results by Monday at my appt. So away we went with the entire weekend to stress out about the results. But, the funniest thing happened, I, Christianne Adamik, queen of the worry warts, did NOT spend a second worrying about the results!!
March 5th~Today I had an appt with my oncologist at 8:30am. Jon and I got ready and we were literally walking out the door, when the phone rang. It was his office cancelling my appointment because Dr Panares was out sick that day. So we rescheduled everything for Wednesday, the appt with infusion (Chemo) right after. So about an hour goes by and Jon is heading out to leave for the day and the phone rings again. This time it is Helen, Dr P's head nurse. She asked if we could come in right now and do my blood work and see a new dr named Dr Patel! I didn't understand why we had to go in right then, when we were all set up for Wednesday! But we went in anyways. I go and do my blood work and then wait to be called back to see dr Patel. We get called back to a room and the nurse takes my vitals and as she is inputting them into the computer, she asks if I wanted to know my CT results because they were in already. I deliberated for a second and decided to bite the bullet and get over it. They said during my infusion (which is the next day) that Dr Panares was going to come in and do my appt during chemo to go over my scan also. But I decide to get the information today and then if I come up with questions later on, I can just bring them to him tomorrow. The new doctor I had never met came in the room. She was really nice and upbeat. She gave me the news I have been dreading to hear since this whole ordeal has started 9 months ago, "I am so sorry to have to tell you that it looks like the cancer has spread a little bit!! You have a new one on your liver and a small spot in front of your bladder!" GREAT!!!! Not only do I have more cancer, but now a new organ is being invaded!! Makes me so angry!! So now here is the top question that pops into my mind... Is Dr D (my surgeon) going to put me back together? Dr Patel said there were no good reasons she could think of that he wouldn't do it for me! But remember, he said he would only do the surgery IF I have no new cancer, and I do!!
March 6th~ I go in for chemo........YUCK!!!!! So at this chemo, Susie was here with me. They usually knock me out with Benedryl right away and I sleep for a couple hours. Well, today I know that Dr P was coming in to do my appt with me so they did the Benedryl last before they started the chemo. I stayed awake the entire time waiting for him. Which might not have been the smartest thing to do because he didn't show up until an hour AFTER MY CHEMO WAS DONE!!! So, now when I try to remember what was said, it isn't with the positive twist he had on it.. When he was done talking, I remember feeling light and happy. BUT NOW, looking back at the bullet points of the convo, its not as happy go lucky like I thought it was when he said it. I will write them out as facts. No emotion, just facts and you can go from there.
1. Dr P really wants me to get the surgery to reconnect me. He said he was really going to push Dr D (the surgeon) to do it. His reasons were for quality of life. He thinks with me not having to worry about the colostomy bag all the time, my mind can focus on fighting harder. He also thinks that it would change the mindset I am in now and get me back to how happy and ready to fight I was before the surgery. Not to mention it would make my life normal again, shower when I want, take a bath again, be able to go to the lake on vacation, etc...
2. The next thing he explained to me was there are only 4 chemo treatments for colon cancer. 1 I am allergic to, 2 they tested on my tumor and it did NOTHING to it and then there is the one I am on now. Pretty much this is the only chemo cocktail that can work for me!! So 4-6 weeks after the surgery, I will be starting a drug called Avastin. It is not a chemo, but it should really help.
3. Eventually, in the future, I will need to go to clinical trials. He suggested USC, he said they are state of the art when it comes to colon cancer. He mentioned UCLA and City of Hope, but he said, USC is better than UCLA when it comes to colon cancer and he admitted he really doesn't know a lot about COH! But he did say for me to check out their websites and see what I thought. I know a lot of my friends and family want me to go to COH, so I will be researching that one for sure.
So first battle we need to take on is Dr P getting Dr D to do the surgery!!
March 12th~ This afternoon I received a call from Dr P's office saying he wants to schedule a PET Scan for me for this week. I asked why did I need another scan when I JUST had a CT Scan!! Then I asked what the difference between a PET Scan and a CT Scan was. She didn't know any of the answers to these simple questions. So she said she would have Dr P call me and he could make the appt. So when I didn't hear from him at 4pm. I decided (With Nanny's suggestion fresh in my mind) to just call them and set up the appt anyways, because what if it was for Dr D? So, I called them and she set up the appt for March 15th @ 7:30am. After a few questions from her, I said, "You mentioned I can't be around pregnant woman for 4 hours after the scan! What about my 2 year old daughter?" Again, she doesn't know, so she puts me on hold and about 5 mins later the phone starts ringing and Dr P was on the other line. He says that I can be around my daughter, it is just a precaution that I can't be around pregnant people. Well, just to be safe, we are starting Caylee in a preschool for 2 half days. She needs more stimulation and my mom and I need a little of a break! I am so sad that she is starting preschool so early, but as a pre k teacher, I know she will LOVE it!! So she will be at school until 12:30pm, then my mom can pick her up and put her straight in her room to take her nap for another 2 hours and then we will be all clear of the radiation! Then he said that Dr D was completely on board to get my surgery done. He just wants a Pet scan to make sure there is no cancer, disease and to make sure my intestines are healthy enough to be put back together. If there is cancer, disease or they are not healthy, the surgery wont work! But Dr P said he looked over my scans from Friday 4 times and there is NOTHING in the area he will be doing surgery on!
We have also started family counseling! The counselor said we are just under more stress than most anyone he knows and that we are a head of the game by having the kids under a strict daily schedule. The boys are both exhibiting signs of real stress, insomnia, dropping grades, fear of getting cancer themselves, stomach aches every time they eat, etc...
So, please pray for my kids and the counselor to teach them and all of us, to handle stress appropriately so we are an emotionally healthy family. Also, pray that Caylee just loves Preschool and that we made the right decision by putting her in at only 2 years old! Pray that my PET Scan comes back clear and we can schedule this surgery soon!! Remember to keep praying because HE is listening!! Lots of love to you all!! Christianne
I don't even know where to start!! The last 2 weeks have been a whirlwind of emotion and exhaustion! Let's start from the beginning!
March 1st~ We headed up to Victorville at 5:30 am, to be there for my sister and Darren while she had her colonoscopy to check for Colon cancer. Nothing like watching your sister suffer thru a horrible day and night because YOU have cancer that she may have because it is hereditary! My brother has already had his colonoscopy (he really didn't want company for his, but my mom and dad were there for him anyways, I gave him his space he wanted!), and PRAISE THE LORD HE WAS CLEAR!! He did have 2 polyps removed that potentially could have turned into cancer, but they are gone now! Both my sister and brother have to have colonoscopies every 5 years for the rest of their lives. My kids have to start getting them at 23 yrs old and will continue to have to have them every 5 years also. My cousins, aunts, uncle and mom are all at risk too! I can not stress enough to them about getting their colonoscopies done to prevent what happened to me from happening to them!! Back to the story! We got there and went to the outpatient surgery offices where they do the colonoscopy. We sat for what seemed forever for them to call her back!! They finally call her back and she is gone for a LONG time. Finally the nurse came out and called Darren to go back with her, I noticed she was holding a picture of my sister's insides! I FLIPPED!! That is what they had to show me my tumor and that's how I was told it was colon cancer! I looked at my mom and seriously almost lost it!! I thought for sure she had cancer! The next few minutes seemed like hours! Finally I get a text from Darren, "NO CANCER, NO POLYPS, PRAISE GOD!!!" I was so relieved!! Darren came out and said that my mom could go back to see her! I have never seen Darren look so light in all my life, he was so happy and relieved!! He started texting right away and I called to let my dad know! I just want to take this moment to really Praise our Lord!! He kept my brother and sister safe! I just couldn't imagine having to do this with one of them! It would be too much! I already have so much guilt about them having to get colonoscopies every 5 yrs! But, that was a good day for our family!! I was so happy!!
March 2nd~ MY TURN!! I had a CT Scan at 1:30pm. We went in and waited for me to drink my 2 cups of Barium, then, I went back. I did so good!! I didn't even cry (I usually cry out of I guess fear during the CT Scans) Jon went back there with me and right away they set me up to access my port for the contrast. It only took the nurse 3 slow, painful pokes to finally get it in the right place!!!! I almost cried then! So I laid down on the table and we started! They let Jon in to see me in the middle of the scan while they were hooking up the contrast and stuff! They were really nice! 30 minutes in the machine and I was done! They told me that the doctor would have the results by Monday at my appt. So away we went with the entire weekend to stress out about the results. But, the funniest thing happened, I, Christianne Adamik, queen of the worry warts, did NOT spend a second worrying about the results!!
March 5th~Today I had an appt with my oncologist at 8:30am. Jon and I got ready and we were literally walking out the door, when the phone rang. It was his office cancelling my appointment because Dr Panares was out sick that day. So we rescheduled everything for Wednesday, the appt with infusion (Chemo) right after. So about an hour goes by and Jon is heading out to leave for the day and the phone rings again. This time it is Helen, Dr P's head nurse. She asked if we could come in right now and do my blood work and see a new dr named Dr Patel! I didn't understand why we had to go in right then, when we were all set up for Wednesday! But we went in anyways. I go and do my blood work and then wait to be called back to see dr Patel. We get called back to a room and the nurse takes my vitals and as she is inputting them into the computer, she asks if I wanted to know my CT results because they were in already. I deliberated for a second and decided to bite the bullet and get over it. They said during my infusion (which is the next day) that Dr Panares was going to come in and do my appt during chemo to go over my scan also. But I decide to get the information today and then if I come up with questions later on, I can just bring them to him tomorrow. The new doctor I had never met came in the room. She was really nice and upbeat. She gave me the news I have been dreading to hear since this whole ordeal has started 9 months ago, "I am so sorry to have to tell you that it looks like the cancer has spread a little bit!! You have a new one on your liver and a small spot in front of your bladder!" GREAT!!!! Not only do I have more cancer, but now a new organ is being invaded!! Makes me so angry!! So now here is the top question that pops into my mind... Is Dr D (my surgeon) going to put me back together? Dr Patel said there were no good reasons she could think of that he wouldn't do it for me! But remember, he said he would only do the surgery IF I have no new cancer, and I do!!
March 6th~ I go in for chemo........YUCK!!!!! So at this chemo, Susie was here with me. They usually knock me out with Benedryl right away and I sleep for a couple hours. Well, today I know that Dr P was coming in to do my appt with me so they did the Benedryl last before they started the chemo. I stayed awake the entire time waiting for him. Which might not have been the smartest thing to do because he didn't show up until an hour AFTER MY CHEMO WAS DONE!!! So, now when I try to remember what was said, it isn't with the positive twist he had on it.. When he was done talking, I remember feeling light and happy. BUT NOW, looking back at the bullet points of the convo, its not as happy go lucky like I thought it was when he said it. I will write them out as facts. No emotion, just facts and you can go from there.
1. Dr P really wants me to get the surgery to reconnect me. He said he was really going to push Dr D (the surgeon) to do it. His reasons were for quality of life. He thinks with me not having to worry about the colostomy bag all the time, my mind can focus on fighting harder. He also thinks that it would change the mindset I am in now and get me back to how happy and ready to fight I was before the surgery. Not to mention it would make my life normal again, shower when I want, take a bath again, be able to go to the lake on vacation, etc...
2. The next thing he explained to me was there are only 4 chemo treatments for colon cancer. 1 I am allergic to, 2 they tested on my tumor and it did NOTHING to it and then there is the one I am on now. Pretty much this is the only chemo cocktail that can work for me!! So 4-6 weeks after the surgery, I will be starting a drug called Avastin. It is not a chemo, but it should really help.
3. Eventually, in the future, I will need to go to clinical trials. He suggested USC, he said they are state of the art when it comes to colon cancer. He mentioned UCLA and City of Hope, but he said, USC is better than UCLA when it comes to colon cancer and he admitted he really doesn't know a lot about COH! But he did say for me to check out their websites and see what I thought. I know a lot of my friends and family want me to go to COH, so I will be researching that one for sure.
So first battle we need to take on is Dr P getting Dr D to do the surgery!!
March 12th~ This afternoon I received a call from Dr P's office saying he wants to schedule a PET Scan for me for this week. I asked why did I need another scan when I JUST had a CT Scan!! Then I asked what the difference between a PET Scan and a CT Scan was. She didn't know any of the answers to these simple questions. So she said she would have Dr P call me and he could make the appt. So when I didn't hear from him at 4pm. I decided (With Nanny's suggestion fresh in my mind) to just call them and set up the appt anyways, because what if it was for Dr D? So, I called them and she set up the appt for March 15th @ 7:30am. After a few questions from her, I said, "You mentioned I can't be around pregnant woman for 4 hours after the scan! What about my 2 year old daughter?" Again, she doesn't know, so she puts me on hold and about 5 mins later the phone starts ringing and Dr P was on the other line. He says that I can be around my daughter, it is just a precaution that I can't be around pregnant people. Well, just to be safe, we are starting Caylee in a preschool for 2 half days. She needs more stimulation and my mom and I need a little of a break! I am so sad that she is starting preschool so early, but as a pre k teacher, I know she will LOVE it!! So she will be at school until 12:30pm, then my mom can pick her up and put her straight in her room to take her nap for another 2 hours and then we will be all clear of the radiation! Then he said that Dr D was completely on board to get my surgery done. He just wants a Pet scan to make sure there is no cancer, disease and to make sure my intestines are healthy enough to be put back together. If there is cancer, disease or they are not healthy, the surgery wont work! But Dr P said he looked over my scans from Friday 4 times and there is NOTHING in the area he will be doing surgery on!
We have also started family counseling! The counselor said we are just under more stress than most anyone he knows and that we are a head of the game by having the kids under a strict daily schedule. The boys are both exhibiting signs of real stress, insomnia, dropping grades, fear of getting cancer themselves, stomach aches every time they eat, etc...
So, please pray for my kids and the counselor to teach them and all of us, to handle stress appropriately so we are an emotionally healthy family. Also, pray that Caylee just loves Preschool and that we made the right decision by putting her in at only 2 years old! Pray that my PET Scan comes back clear and we can schedule this surgery soon!! Remember to keep praying because HE is listening!! Lots of love to you all!! Christianne
Tuesday, February 28, 2012
Well, Jon and I celebrated our 11 year wedding anniversary on the 17th of this month! He took me away for the night to the Morongo! It was so nice to just get away and actually forget I am sick for 1 night! Although, when I had to take a billion prescriptions before bed, it kinda reminded me! LOL! But it was a much needed night away without kids! (THANKS MOM AND DAD!)
Feb 20th~ I had my regular appointment today and got great news, my cancer numbers dropped from 19 to 14! These numbers are from 2 weeks ago, they didn't get today's numbers in yet! They also scheduled my CT Scan, it is on March 2nd at 11:30am (PST)! Please pray that I get good results! I know God is in control, but it is so hard not to worry! Then, when do worry, I feel unfaithful! If you know me, you know that this is a vicious cycle I have done my whole life! I am the biggest worrier and guilt ridden person I know! They did also prescribe me new anti-nausea medicine during my infusion that will last 3 days! (It worked awesome too!)
Feb 21st~ YUCK! CHEMO AGAIN!! This round my sister came with me! I have to admit, I was worried for her to come with me because I was afraid it would be too much for her! I mean hearing about what I go through and seeing it up close are two very different things! But she met "Zombie Christi" and did just fine! Of course I slept most of the time! Then I found out from my chemo nurse that they lowered my steriod dose for some reason! I could really tell, I was a lot more tired the following couple days after my treatment! Not good when you have 3 kids to chase after all day! Especially one who is starting the terrible two's! YIKES!! I also mentioned to the nurse that I would like to see my cancer numbers for this week, well, she pulled them for me and guess what?!! They went UP!! Not by much, but still, not the news I was hoping for! They are now at 16. BUMMER!
So, I do have a couple of prayer requests. SHOCKING! I know!! But this coming week on March 1st, my sister is having a colonoscopy done! PLEASE pray they find NOTHING!! I am really confident she is ok! But, every prayer will help solidify that! Also, pray that on the 2nd the scan shows no new cancer and hopefully a reduction in the amount of cancer in me! I really want to have the surgery to put me back together and this scan is what it depends on! Keep praying, God is listening! Love you all so much and I am SO thankful for all the thoughts and prayers!
Feb 20th~ I had my regular appointment today and got great news, my cancer numbers dropped from 19 to 14! These numbers are from 2 weeks ago, they didn't get today's numbers in yet! They also scheduled my CT Scan, it is on March 2nd at 11:30am (PST)! Please pray that I get good results! I know God is in control, but it is so hard not to worry! Then, when do worry, I feel unfaithful! If you know me, you know that this is a vicious cycle I have done my whole life! I am the biggest worrier and guilt ridden person I know! They did also prescribe me new anti-nausea medicine during my infusion that will last 3 days! (It worked awesome too!)
Feb 21st~ YUCK! CHEMO AGAIN!! This round my sister came with me! I have to admit, I was worried for her to come with me because I was afraid it would be too much for her! I mean hearing about what I go through and seeing it up close are two very different things! But she met "Zombie Christi" and did just fine! Of course I slept most of the time! Then I found out from my chemo nurse that they lowered my steriod dose for some reason! I could really tell, I was a lot more tired the following couple days after my treatment! Not good when you have 3 kids to chase after all day! Especially one who is starting the terrible two's! YIKES!! I also mentioned to the nurse that I would like to see my cancer numbers for this week, well, she pulled them for me and guess what?!! They went UP!! Not by much, but still, not the news I was hoping for! They are now at 16. BUMMER!
So, I do have a couple of prayer requests. SHOCKING! I know!! But this coming week on March 1st, my sister is having a colonoscopy done! PLEASE pray they find NOTHING!! I am really confident she is ok! But, every prayer will help solidify that! Also, pray that on the 2nd the scan shows no new cancer and hopefully a reduction in the amount of cancer in me! I really want to have the surgery to put me back together and this scan is what it depends on! Keep praying, God is listening! Love you all so much and I am SO thankful for all the thoughts and prayers!
Wednesday, February 15, 2012
Happy Valentine's Day!!
Happy Valentine's Day to all our friends and family! Remember the greatest act of love was Christ laying down his life for our salvation!! I don't want to hear anyone say they don't have a Valentine, CHRIST is our ultimate Valentine!
We had a great day! We went and dropped off a Valentine to our Grandma Turtle (Casey) it was the first VDAY without my grandpa. So it was a bittersweet day for the whole family! Pop made sure all his girls had Valentines every year. That tradition was passed down to his son Russell, who is my God father! Every year I have received candy for Valentines day!! He never forgets me and it means a lot to me! I know its just candy, but I love that he remembers me and shows his love for me year after year!
So on Feb 6, I had my dr appt with the oncologist. He did tell me my cancer numbers were going back down!!! YAY!!! Praise the Lord! It went from 21 to 19 and he hadn't got my numbers from that day in yet because the lab was so busy, but he was sure he would see the numbers still going down. I asked were those numbers good and his answer was, "Well. they were A LOT higher when you first started coming in!!" Not really a clear answer, so I will just take that as, "Don't ask me that please!"
He said he wanted to get me in for a scan in 3 weeks because he wants the ball rolling for the surgery to put me back together and lose the colostomy bag!!! Then, he said once I am healed up and back on my feet from that, he wants to hit this cancer hard!!! He is going to put me on a 4th medication called Avastin. So he will be adding it to my already heavy chemo cocktail. Well, I think its heavy anyway!
The next day, Feb 7th, was chemo again!! It comes along way too quickly!! My friend Susie took me this time! We decided to watch the movie 50/50 on my laptop, well, I fell asleep and she watched it! LOL! I had already seen it and it is a VERY good movie, I highly recommend it if you want to see a true portrayal of cancer treatments and the feelings and actions of a cancer patient.
Chemo went well and we headed home. That's when it started! I got so sick to my stomach! I was in bed for 2 days straight. NOT FUN!! It hit me hard this round! Sick, throwing up and having "D"!! It was terrible. I am going to actually ask the doctor if we can maybe try a different cocktail changing out the cpt-11 to something different. I miss my first chemo drug. I had NO side effects from it at all!! But I can't ever go back on that drug.
well, that's it for now!! I am going to go! Keep praying for me and the whole family! God is listening!!! oh ya! A little more good news! I have not been losing my hair! I should have lost it by now, so I am thinking that is 1 side effect I will not have to deal with PTL!!!! Ahhh, the things that make me happy these days!
We had a great day! We went and dropped off a Valentine to our Grandma Turtle (Casey) it was the first VDAY without my grandpa. So it was a bittersweet day for the whole family! Pop made sure all his girls had Valentines every year. That tradition was passed down to his son Russell, who is my God father! Every year I have received candy for Valentines day!! He never forgets me and it means a lot to me! I know its just candy, but I love that he remembers me and shows his love for me year after year!
So on Feb 6, I had my dr appt with the oncologist. He did tell me my cancer numbers were going back down!!! YAY!!! Praise the Lord! It went from 21 to 19 and he hadn't got my numbers from that day in yet because the lab was so busy, but he was sure he would see the numbers still going down. I asked were those numbers good and his answer was, "Well. they were A LOT higher when you first started coming in!!" Not really a clear answer, so I will just take that as, "Don't ask me that please!"
He said he wanted to get me in for a scan in 3 weeks because he wants the ball rolling for the surgery to put me back together and lose the colostomy bag!!! Then, he said once I am healed up and back on my feet from that, he wants to hit this cancer hard!!! He is going to put me on a 4th medication called Avastin. So he will be adding it to my already heavy chemo cocktail. Well, I think its heavy anyway!
The next day, Feb 7th, was chemo again!! It comes along way too quickly!! My friend Susie took me this time! We decided to watch the movie 50/50 on my laptop, well, I fell asleep and she watched it! LOL! I had already seen it and it is a VERY good movie, I highly recommend it if you want to see a true portrayal of cancer treatments and the feelings and actions of a cancer patient.
Chemo went well and we headed home. That's when it started! I got so sick to my stomach! I was in bed for 2 days straight. NOT FUN!! It hit me hard this round! Sick, throwing up and having "D"!! It was terrible. I am going to actually ask the doctor if we can maybe try a different cocktail changing out the cpt-11 to something different. I miss my first chemo drug. I had NO side effects from it at all!! But I can't ever go back on that drug.
well, that's it for now!! I am going to go! Keep praying for me and the whole family! God is listening!!! oh ya! A little more good news! I have not been losing my hair! I should have lost it by now, so I am thinking that is 1 side effect I will not have to deal with PTL!!!! Ahhh, the things that make me happy these days!
Sunday, January 29, 2012
The doctor is in!
Jan 23rd- Today was my regular oncology appointment. I do have a cold and so that makes me a little worried about my white blood count. When we get there, we find out that the doctor is already back from having the baby!! So that was good. In the appointment, he said my blood count was a little low, but not too low that I couldn't do chemo. which was a blessing and a curse! I hate going to chemo, but I know I have to! He also mentioned something that startled me a little bit. He said my chemo numbers were going up. Of course, being the scaredy cat I am, I didn't ask any questions. He went on to say that when I finish up this round of chemo and get my next scan done, we will send everything over to my surgeon, Dr. D and then set up my surgery to reattach me about 3 weeks after that! PRAISE THE LORD!!! I am so over this colostomy bag! I feel like a robot or something. It's just so unnatural! I know, I am a brat and should just be thankful that I am alive!! SO, after the surgery, my doctor said we are going to hit this cancer hard!! we are coming back and doing a 4th chemo called, Avastin. So, I will be on 4 different chemo meds
Jan 24th- Chemo time!! We went over all the side effects that I experienced the last time around. Not too bad! Only 2 days in bed this time around. feeling so sick and had a headache. But then, it turned into fatigue. But, I pushed past that. Then the nurse looked at me and asked, "So, when are you going to be thru with all of this?" Not a fun question, but I get it often. i just looked at her and said, "Well.... I am stage 4 and according to the dr's I will never be done with chemo. But, I am thinking I will have to endure this about another year or so!!" She smiled and replied, "So you are going to be here for the long haul huh? You can do it!!"
So we get home and I go to bed. I didn't get the headache, but the nausea was horrible. That next day was better! It got so good I attempted DISNEYLAND on Friday! I did overdo it and on Saturday, I paid for it!! But I don't regret one minute,.The kids were so excited that we all made it!
Saturday, January 14, 2012
Hmmm....
Hey there everyone, here is another update! So, as you remember, last time I had the allergic reaction to the chemo I was taking. My dr had told me at my regular appointment that he was probably going to be out for my next appointment because he and his wife are expecting a baby boy any second now. Well, I decided to be unlike myself and be pro-active with my health and call my oncologist, before he went out with the baby, and see what the name of the new chemo is and find out the side effects. So the week before I had chemo I called 3 TIMES, leaving a message each time for him. FINALLY, on the Friday before my dr appt, I got a call back from his nurse. She let me know that he will go over everything on the following Monday and let me know everything then. I reminded her that he was going out on leave for the baby. She said, "He doesn't think the baby will come by then, so he is going to continue to come in until the baby arrives." I said, "OK, well, what if it does come?" She said that he will let the NP know all about what is going on and she will let me know at my appointment. I asked if she (the nurse) knew if he had decided on a chemo treatment yet. She said, "Well, since your file is on his desk, I will assume that he has and you guys can discuss it on Monday!" I was satisfied with that and got off the phone.
Jan 9th- Today is the appointment I have been waiting for, I am going to find out the new chemo and side effects. Fun, I know right? Well, I get to the appt and do my blood work as usual. OF COURSE, the baby was born on the Friday before my appt, so my dr was not there. The NP came in and told me everything looked good and that I was all clear for chemo the next day. So, I looked at her and asked, "what is my new chemo and the side effects from it?" She asked me what I was talking about! I told her all about the time before and told her I was allergic to my old chemo. She said there was nothing like that in my file!!! WHAT???!!! After all the phone calls and bugging the nurse, etc.... She said they didn't even mark it in my file that I had an allergy now! So she wrote it in my file and excused herself from the room. She went and talked to my dr's head nurse who I had spoke to on the phone and she said, "We shouldn't bug Dr Panares right now! They are probably just getting home or just getting settled in!" ARE YOU KIDDING ME?? This is literally my LIFE we are talking about. The NP came back in the room and told me what the nurse said and told me that she would text the dr and hopefully he will respond by today or we will have to reschedule my chemo day to next week and have a different dr decide my new course of treatment! I was so mad!! It wouldn't have been so bad if I hadn't called him and reminded him 3 times that I need a new chemo treatment! Thankfully later that day the NP called and said that he called right back and apologized and my new chemo treatment is called CPT-11. The side effects are more harsh than my last chemo and they said I will probably lose my hair! I know, not a big deal compared to what I am going thru. But, I just keep thinking it will be a constant reminder that I am sick to my kids and loved ones. Also, right now, no one knows I am sick! I can go into Target without stares or sympathetic looks! I am just Christianne, shopping at Target, picking up diapers! Not so much anymore!
Jan 10th- I was so nervous to start this new chemo! But, I went in and faced it like a woman! It went quicker than normal! So Jon and I get home and it starts to hit me! I feel so sick to my stomach and have the worst headache!! I just go to bed early. The next day I don't get out of bed at all!! I just literally lay in bed until about 3pm!
I am doing better now! I am hoping that like my last chemo, I will get used to it after a couple of times and I won't have such harsh side effects. Like always, keep praying, God is listening. Pray for my family! Pray for strength for me. This is so hard! Sometimes I feel so unfaithful! Pray for Jon to remain sane as I go insane! Pray for my kids, that they don't get to negatively affected by this whole situation. Thank you all and I love you all so much! Your love and support mean everything to me!
Jan 9th- Today is the appointment I have been waiting for, I am going to find out the new chemo and side effects. Fun, I know right? Well, I get to the appt and do my blood work as usual. OF COURSE, the baby was born on the Friday before my appt, so my dr was not there. The NP came in and told me everything looked good and that I was all clear for chemo the next day. So, I looked at her and asked, "what is my new chemo and the side effects from it?" She asked me what I was talking about! I told her all about the time before and told her I was allergic to my old chemo. She said there was nothing like that in my file!!! WHAT???!!! After all the phone calls and bugging the nurse, etc.... She said they didn't even mark it in my file that I had an allergy now! So she wrote it in my file and excused herself from the room. She went and talked to my dr's head nurse who I had spoke to on the phone and she said, "We shouldn't bug Dr Panares right now! They are probably just getting home or just getting settled in!" ARE YOU KIDDING ME?? This is literally my LIFE we are talking about. The NP came back in the room and told me what the nurse said and told me that she would text the dr and hopefully he will respond by today or we will have to reschedule my chemo day to next week and have a different dr decide my new course of treatment! I was so mad!! It wouldn't have been so bad if I hadn't called him and reminded him 3 times that I need a new chemo treatment! Thankfully later that day the NP called and said that he called right back and apologized and my new chemo treatment is called CPT-11. The side effects are more harsh than my last chemo and they said I will probably lose my hair! I know, not a big deal compared to what I am going thru. But, I just keep thinking it will be a constant reminder that I am sick to my kids and loved ones. Also, right now, no one knows I am sick! I can go into Target without stares or sympathetic looks! I am just Christianne, shopping at Target, picking up diapers! Not so much anymore!
Jan 10th- I was so nervous to start this new chemo! But, I went in and faced it like a woman! It went quicker than normal! So Jon and I get home and it starts to hit me! I feel so sick to my stomach and have the worst headache!! I just go to bed early. The next day I don't get out of bed at all!! I just literally lay in bed until about 3pm!
I am doing better now! I am hoping that like my last chemo, I will get used to it after a couple of times and I won't have such harsh side effects. Like always, keep praying, God is listening. Pray for my family! Pray for strength for me. This is so hard! Sometimes I feel so unfaithful! Pray for Jon to remain sane as I go insane! Pray for my kids, that they don't get to negatively affected by this whole situation. Thank you all and I love you all so much! Your love and support mean everything to me!
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