On Tuesday night the boys attended the group therapy through Kids Konnected! They were the only kids there besides the youth leaders. The youth leaders range from 16 years old to 21 years old. The boys loved it!! They said they talked a lot. Because of confidentiality reasons, Jon couldn't be in the room with them. But I think that helped them open up more. They were so surprised and I think comforted that all the youth leaders either had a parent with cancer or a parent who died from cancer. They have never met anyone in their situation.
When they got home, they had made drawings and put stickers all over them that said, "God loves you!" or "I love Jesus"!! That comforted me so much! They can't wait to go back! I am so happy!
Thank you for praying with me and Jon over this situation. They mean more to me than anything I am going thru! I will do anything for the kids to have as normal life as possible! So please keep praying for them!! THANKS!!
Wednesday, May 23, 2012
IT'S ONLY WEDNESDAY????
It has been a long week and it is barely half over! I am praying for the rest of the week to fly by! So much has happened already.
Monday, May 21st- I had an appointment with a dermatologist. Susie took me to my appointment! We have not hung out together since the hospital, way too long!! Anyways, I have had a rash under my left arm that has been there for months. I got an ointment for that. Then I was diagnosed with hand eczema! NICE!! Got another cream for that. Finally I showed the dermatologist my Stoma (place where the colostomy bag connected to my body) because I have had a rash from the appliance for MONTHS and it still hasn't cleared, even with the bag being gone for over a month! So the dr told me the eczema cream will get rid of that too.
Tuesday, May 22nd-I went back to my oncologist, Dr Panares. I have to admit, I have been pretty upset with him. He has not contacted me, asked about me and he didn't even bother to cross the street to check on me while I was in the hospital for 5 days. The kicker is, Jon even ran into him while we were in the hospital and told him what room I was in and he said he would stop by and he never did. What can you do I guess. Susie picked me up that morning, I MADE Jon go to work!! He didn't need to miss anymore work. He really tried to go, even tried staying home until I left trying to change my mind, but I told him I would be fine.
We got to the cancer center and I did my blood work. Then we waited for the nurse to call me back. We went back and they took my vitals and everything was good. But even though I am on blood pressure pills, my BP is never normal! Yesterday was not different. It was 156/90! (This info is important for later in the story) So finally after 3 months, I see Dr Panares. He was SHOCKED to see how good I looked! He just kept repeating himself that my quality of life is so good right now. He said that he got my blood work back and my numbers looked great. He said he didn't run my tumor marker numbers but he will call the lab and have them run the numbers. So then he started saying that we needed to "get back on the horse!" So, I told him that I have my summer planned and I wanted to start chemo TOMORROW!!! Again, he was shocked! He said he had to call and check to see if they could squeeze me in that quickly.
Susie then brought up the new med that he had been bringing up before the surgery that he wanted to start me on, Avastin. He said that he didn't want to start me on it yet because of the side effects. I have to be completely healed from the surgery because Avastin can cause your bowels to rupture. He was concerned because he said with my history of my bowel already rupturing, he was a little nervous to start it. It also causes bleeding. I am assuming like a blood thinner does. It also causes high blood pressure!! Great so I have 2 major side effects to worry about. So he told me that I had to call my primary care physician and get better BP meds.
He also said that I needed to have another CT Scan! He said we needed a new baseline for the tumors because if we wait and have the scan after 8 weeks of chemo, then we might believe the tumors are growing and the chemo isn't working, but in fact it might be working! For instance if a tumor has gone from 2cm to 3.5 cm and we didn't have that scan. When we go to do the scan in 8 weeks after chemo that tumor is 3 cm, we will think that they are growing instead of shrinking. So that was scheduled for next Wednesday at 11:30am. Please pray that the cancer hasn't grown too much if at all!
He excused himself to go check to see if they could fit me into chemo tomorrow. He came back and said I was scheduled for 7:30am! He mentioned they were pretty busy because of the 3 day holiday coming up!
So, the more I thought about it, the more scared I got to start Avastin. Do the benefits really outweigh the risks? Let me tell you, I WILL DO ANYTHING NOT TO HAVE A COLOSTOMY BAG AGAIN!! So I decide to... dun, dun, dun GOOGLE IT!! LOL! Wikipedia said that on average it only prolongs a colon cancer patients life by 4.7 MONTHS!!! Not years, months!! It also said it was linked to not only bowel rupture, but stomach and nasal septum ruptures also. But my sister googled it and read that a man has been on it and it has prolonged his life for over 4 YEARS and counting!! So please pray about this decision with me and Jon! Its really a big one. We are also seeking out opinions from different professionals for their opinions. So far I asked 2 chemo nurses about it today at chemo. The first nurse said it was her "educated guess" that since I don't have cancer in my colon that there would be no reason for my bowels to rupture. She said that the way Avastin works is by stopping my body from creating new blood vessels. So therefore it would "starve" the tumors and they will stop growing and hopefully shrink them. She said she has seen it prolong patients lives for years! Then the next nurse was MUCH more leery! She said, "just as soon as you feel the pain of the ruptured bowel, go straight to the hospital because you could bleed out quickly on it!" UGH!!! She did remind me not to worry about it too much right now, that we have over a month to decide and with prayer, we will have an answer. So, pretty much, I was back to square one! After chemo, we (Jon and I) decided to call Dr D (my surgeon) and ask his opinion. Also, if we do decide to try this, I want a guarantee that if something was to go wrong, that no matter if he was not on call or not, he would come in to do the surgery!! He was out of the office, but he was out of the office and will call us tomorrow. Also, Avastin is a very expensive treatment! $100,000.00 for a year's worth of treatment and the computer mentioned a lot of insurances don't carry it. So I prayed and just said, "If I am for sure not supposed to do this treatment, just have my insurance deny it!!" So Jon called Cigna and they said they do cover it if you qualify! There are 13 requirements for it. I AM JUST PUTTING THIS IN GOD'S HANDS!! I am praying for a loud and clear answer!
Wednesday May 23rd-My sister spent a restless night in my boys room, on the bottom bunk, on the worst mattress in the whole house, just to take me to chemo!! We left at 7:25am, yep, we were late! But believe me, the chemo nurses are used to that! I was nervous! As we were going up the elevator, a man and what we believe to be his son we in the elevator with us. The dad was a little older than me, good looking, in shape and was carrying a back pack (a tell tale sign he was going to chemo) His son was a teenager. Athletic looking and I thought to myself, "What a good kid, hanging with his dad and taking him to chemo." Then I looked at the dad wondering what kind of chemo it was and that he looked so good! We get into the infusion center waiting room and I mention to Betsy (my sister) that he looked so good and strong for being on chemo and having cancer. She agreed and said she was thinking the same thing. A few minutes go by and the boy looks at his dad and says, "Don't forget mom wants you to keep an eye on the injection site and write down any side effects I have!" Then we realize the BOY HAD CANCER!! So sad! Then they called me back after waiting about 20 minutes and set me up in a chair! Not my private room like normal, but probably because they had to pencil me in! LOL! Like always I slept the entire time, while my sister watched me like a hawk (nurses orders) to make sure I didn't have a reaction to the chemo. We got home at noon and I started feeling horrible. I ate knowing I wouldn't be able to eat dinner tonight and I stayed up as long as I could and they got in bed. I have been here ever since. My sister stayed and helped my mom with the kids until she had to go to school at 5pm. She hasn't been with her kids for 2 days just to help me out!
So I haven't felt this bad in a long time. I think, I don't quite remember, but I think tomorrow will be even worse. But by Sunday I think I will be feeling better!
I have another PRAISE REPORT!! Your prayers worked AGAIN!!! My friend Tyler who was supposed to have that big surgery and a colostomy bag put in, had his colonoscopy and endoscopy! It turns out he is going to be OK!! I can't remember the details, but as of right now he is not having the surgery and they are just keeping an eye on things! PRAISE GOD!!
But I have a prayer request for a family I just found out about today. There is a man named, Zack Malone. He looks younger than I am, he is married and has a 2 year old son. He was diagnosed with Stage 4 colon cancer a little over 2 years ago. He was told last week that his liver is shutting down, they sent him home and put him on hospice. There is a fundraiser on Facebook going on. Proceeds from a Scentsy party is going straight to the family for medical bills, house bills, food, etc... PLEASE TAKE A LOOK AT THE PRODUCTS!! Any little bit helps! Plus, who doesn't like Scentsy? If you can not help out financially, please keep this family in prayer! He just accepted the Lord recently! THANK YOU JESUS!! Here is the link to the fundraiser. https://
Well, I am wrapping this up!! Please continue to pray! God is really listening! He answered our prayers for the kids therapy, he answered our prayers for Tyler and I am sure he will answer our prayer for the Avastin situation!!
I WANT TO SAY THANK YOU TO SOME PEOPLE WHO HAVE REALLY BEEN THERE FOR ME RECENTLY!!
Susie, my taxi and my brain in the dr office!! Thanks so much for everything you have done for me and my family the past year!!! I HONESTLY COULD NOT HAVE DONE IT WITHOUT YOU!! I love you so much!!
Betsy~ Thank you for being there for me emotionally and all your help with the kids and taking me to chemo. I know you have so much going on in your own life, but there isn't a day that goes by that you don't check on me and make sure I am ok! I love you and couldn't ask for a better sister!!
My parents~ Thank you for being mom and dad to my kids when we can't!! Taking and picking up the kids for school, soccer, preschool, back to school nights, parent/teacher conferences, the kids workshops every weekend, church and so much more!! We can never repay you! I am sorry for what I am putting you both thru! You don't deserve this. First we take over your house and now I get sick on top of it, its not right and I am sorry!!
Nanny, David and Brian~ It means so much to me that you visit me so much! Also for researching natural ways to keep me healthy!! VEGGIES AND COLLARD GREENS! See!! I remember! Nanny I really appreciate your texts, cards, having your best friend make my chemo purses and taking me to get my pump out! I love you all very much!!
Dave Durniok~ Thank you for your friendship this year! For all the encouragement and reminding me God is holding me through this storm! Thank for praying with me and making sure I realize I can beat this! Reminding me that with God ALL things are possible!! I have grown so much closer to Him with your help and guidance! We need to get together again!
My church family~ Thank you for the prayers, meals, cards, phone calls, visits and friendships. I love my church and everyone in it so much!
Krista~My endless love! Thank you for the pep talk the other night! One of these times I will be able to hang out with you without crying! I just can't imagine me without you! I love you so much! Just quit telling me the ending of things or I will have to punch you!!LOL!!
Jon~I can't even begin to know where to start with you! You have been so patient with me and loved me thru the whole year! You have been my best friend, nurse, shoulder to cry on! You have held my hair while I have been sick, bathed me when I can't get out of bed, changed my bag EVERY TIME, walked with me, taken care of the kids, gotten up in the middle of the night just to make sure I had my pills on time, dressed me when I was too weak, been to most every dr appointment and treated me like a normal person the entire time. THANK YOU and I know, no one could ever love me like you do!! I love you with my entire being and can't imagine being any happier than I am with you!
Thank you to everyone else! Please don't be offended if I forgot anyone! I am not at my best right now!! Please know I appreciate everything that has been done for us over the past year! We couldn't have made it without every ones help and prayers!! Thanks again!!
Monday, May 21st- I had an appointment with a dermatologist. Susie took me to my appointment! We have not hung out together since the hospital, way too long!! Anyways, I have had a rash under my left arm that has been there for months. I got an ointment for that. Then I was diagnosed with hand eczema! NICE!! Got another cream for that. Finally I showed the dermatologist my Stoma (place where the colostomy bag connected to my body) because I have had a rash from the appliance for MONTHS and it still hasn't cleared, even with the bag being gone for over a month! So the dr told me the eczema cream will get rid of that too.
Tuesday, May 22nd-I went back to my oncologist, Dr Panares. I have to admit, I have been pretty upset with him. He has not contacted me, asked about me and he didn't even bother to cross the street to check on me while I was in the hospital for 5 days. The kicker is, Jon even ran into him while we were in the hospital and told him what room I was in and he said he would stop by and he never did. What can you do I guess. Susie picked me up that morning, I MADE Jon go to work!! He didn't need to miss anymore work. He really tried to go, even tried staying home until I left trying to change my mind, but I told him I would be fine.
We got to the cancer center and I did my blood work. Then we waited for the nurse to call me back. We went back and they took my vitals and everything was good. But even though I am on blood pressure pills, my BP is never normal! Yesterday was not different. It was 156/90! (This info is important for later in the story) So finally after 3 months, I see Dr Panares. He was SHOCKED to see how good I looked! He just kept repeating himself that my quality of life is so good right now. He said that he got my blood work back and my numbers looked great. He said he didn't run my tumor marker numbers but he will call the lab and have them run the numbers. So then he started saying that we needed to "get back on the horse!" So, I told him that I have my summer planned and I wanted to start chemo TOMORROW!!! Again, he was shocked! He said he had to call and check to see if they could squeeze me in that quickly.
Susie then brought up the new med that he had been bringing up before the surgery that he wanted to start me on, Avastin. He said that he didn't want to start me on it yet because of the side effects. I have to be completely healed from the surgery because Avastin can cause your bowels to rupture. He was concerned because he said with my history of my bowel already rupturing, he was a little nervous to start it. It also causes bleeding. I am assuming like a blood thinner does. It also causes high blood pressure!! Great so I have 2 major side effects to worry about. So he told me that I had to call my primary care physician and get better BP meds.
He also said that I needed to have another CT Scan! He said we needed a new baseline for the tumors because if we wait and have the scan after 8 weeks of chemo, then we might believe the tumors are growing and the chemo isn't working, but in fact it might be working! For instance if a tumor has gone from 2cm to 3.5 cm and we didn't have that scan. When we go to do the scan in 8 weeks after chemo that tumor is 3 cm, we will think that they are growing instead of shrinking. So that was scheduled for next Wednesday at 11:30am. Please pray that the cancer hasn't grown too much if at all!
He excused himself to go check to see if they could fit me into chemo tomorrow. He came back and said I was scheduled for 7:30am! He mentioned they were pretty busy because of the 3 day holiday coming up!
So, the more I thought about it, the more scared I got to start Avastin. Do the benefits really outweigh the risks? Let me tell you, I WILL DO ANYTHING NOT TO HAVE A COLOSTOMY BAG AGAIN!! So I decide to... dun, dun, dun GOOGLE IT!! LOL! Wikipedia said that on average it only prolongs a colon cancer patients life by 4.7 MONTHS!!! Not years, months!! It also said it was linked to not only bowel rupture, but stomach and nasal septum ruptures also. But my sister googled it and read that a man has been on it and it has prolonged his life for over 4 YEARS and counting!! So please pray about this decision with me and Jon! Its really a big one. We are also seeking out opinions from different professionals for their opinions. So far I asked 2 chemo nurses about it today at chemo. The first nurse said it was her "educated guess" that since I don't have cancer in my colon that there would be no reason for my bowels to rupture. She said that the way Avastin works is by stopping my body from creating new blood vessels. So therefore it would "starve" the tumors and they will stop growing and hopefully shrink them. She said she has seen it prolong patients lives for years! Then the next nurse was MUCH more leery! She said, "just as soon as you feel the pain of the ruptured bowel, go straight to the hospital because you could bleed out quickly on it!" UGH!!! She did remind me not to worry about it too much right now, that we have over a month to decide and with prayer, we will have an answer. So, pretty much, I was back to square one! After chemo, we (Jon and I) decided to call Dr D (my surgeon) and ask his opinion. Also, if we do decide to try this, I want a guarantee that if something was to go wrong, that no matter if he was not on call or not, he would come in to do the surgery!! He was out of the office, but he was out of the office and will call us tomorrow. Also, Avastin is a very expensive treatment! $100,000.00 for a year's worth of treatment and the computer mentioned a lot of insurances don't carry it. So I prayed and just said, "If I am for sure not supposed to do this treatment, just have my insurance deny it!!" So Jon called Cigna and they said they do cover it if you qualify! There are 13 requirements for it. I AM JUST PUTTING THIS IN GOD'S HANDS!! I am praying for a loud and clear answer!
Wednesday May 23rd-My sister spent a restless night in my boys room, on the bottom bunk, on the worst mattress in the whole house, just to take me to chemo!! We left at 7:25am, yep, we were late! But believe me, the chemo nurses are used to that! I was nervous! As we were going up the elevator, a man and what we believe to be his son we in the elevator with us. The dad was a little older than me, good looking, in shape and was carrying a back pack (a tell tale sign he was going to chemo) His son was a teenager. Athletic looking and I thought to myself, "What a good kid, hanging with his dad and taking him to chemo." Then I looked at the dad wondering what kind of chemo it was and that he looked so good! We get into the infusion center waiting room and I mention to Betsy (my sister) that he looked so good and strong for being on chemo and having cancer. She agreed and said she was thinking the same thing. A few minutes go by and the boy looks at his dad and says, "Don't forget mom wants you to keep an eye on the injection site and write down any side effects I have!" Then we realize the BOY HAD CANCER!! So sad! Then they called me back after waiting about 20 minutes and set me up in a chair! Not my private room like normal, but probably because they had to pencil me in! LOL! Like always I slept the entire time, while my sister watched me like a hawk (nurses orders) to make sure I didn't have a reaction to the chemo. We got home at noon and I started feeling horrible. I ate knowing I wouldn't be able to eat dinner tonight and I stayed up as long as I could and they got in bed. I have been here ever since. My sister stayed and helped my mom with the kids until she had to go to school at 5pm. She hasn't been with her kids for 2 days just to help me out!
So I haven't felt this bad in a long time. I think, I don't quite remember, but I think tomorrow will be even worse. But by Sunday I think I will be feeling better!
I have another PRAISE REPORT!! Your prayers worked AGAIN!!! My friend Tyler who was supposed to have that big surgery and a colostomy bag put in, had his colonoscopy and endoscopy! It turns out he is going to be OK!! I can't remember the details, but as of right now he is not having the surgery and they are just keeping an eye on things! PRAISE GOD!!
But I have a prayer request for a family I just found out about today. There is a man named, Zack Malone. He looks younger than I am, he is married and has a 2 year old son. He was diagnosed with Stage 4 colon cancer a little over 2 years ago. He was told last week that his liver is shutting down, they sent him home and put him on hospice. There is a fundraiser on Facebook going on. Proceeds from a Scentsy party is going straight to the family for medical bills, house bills, food, etc... PLEASE TAKE A LOOK AT THE PRODUCTS!! Any little bit helps! Plus, who doesn't like Scentsy? If you can not help out financially, please keep this family in prayer! He just accepted the Lord recently! THANK YOU JESUS!! Here is the link to the fundraiser. https://
Well, I am wrapping this up!! Please continue to pray! God is really listening! He answered our prayers for the kids therapy, he answered our prayers for Tyler and I am sure he will answer our prayer for the Avastin situation!!
I WANT TO SAY THANK YOU TO SOME PEOPLE WHO HAVE REALLY BEEN THERE FOR ME RECENTLY!!
Susie, my taxi and my brain in the dr office!! Thanks so much for everything you have done for me and my family the past year!!! I HONESTLY COULD NOT HAVE DONE IT WITHOUT YOU!! I love you so much!!
Betsy~ Thank you for being there for me emotionally and all your help with the kids and taking me to chemo. I know you have so much going on in your own life, but there isn't a day that goes by that you don't check on me and make sure I am ok! I love you and couldn't ask for a better sister!!
My parents~ Thank you for being mom and dad to my kids when we can't!! Taking and picking up the kids for school, soccer, preschool, back to school nights, parent/teacher conferences, the kids workshops every weekend, church and so much more!! We can never repay you! I am sorry for what I am putting you both thru! You don't deserve this. First we take over your house and now I get sick on top of it, its not right and I am sorry!!
Nanny, David and Brian~ It means so much to me that you visit me so much! Also for researching natural ways to keep me healthy!! VEGGIES AND COLLARD GREENS! See!! I remember! Nanny I really appreciate your texts, cards, having your best friend make my chemo purses and taking me to get my pump out! I love you all very much!!
Dave Durniok~ Thank you for your friendship this year! For all the encouragement and reminding me God is holding me through this storm! Thank for praying with me and making sure I realize I can beat this! Reminding me that with God ALL things are possible!! I have grown so much closer to Him with your help and guidance! We need to get together again!
My church family~ Thank you for the prayers, meals, cards, phone calls, visits and friendships. I love my church and everyone in it so much!
Krista~My endless love! Thank you for the pep talk the other night! One of these times I will be able to hang out with you without crying! I just can't imagine me without you! I love you so much! Just quit telling me the ending of things or I will have to punch you!!LOL!!
Jon~I can't even begin to know where to start with you! You have been so patient with me and loved me thru the whole year! You have been my best friend, nurse, shoulder to cry on! You have held my hair while I have been sick, bathed me when I can't get out of bed, changed my bag EVERY TIME, walked with me, taken care of the kids, gotten up in the middle of the night just to make sure I had my pills on time, dressed me when I was too weak, been to most every dr appointment and treated me like a normal person the entire time. THANK YOU and I know, no one could ever love me like you do!! I love you with my entire being and can't imagine being any happier than I am with you!
Thank you to everyone else! Please don't be offended if I forgot anyone! I am not at my best right now!! Please know I appreciate everything that has been done for us over the past year! We couldn't have made it without every ones help and prayers!! Thanks again!!
Monday, May 21, 2012
My babies
A lot of people ask how the kids are doing. Usually we reply, "They are hanging in there" or "They are OK!" Truth is, they are not OK or hanging in there. I have mentioned before that they needed prayer and I went into it a little about what they are going through, but tonight I will go more in depth.
We have been dealing with our 10 yr old, Jonny, waking up in the middle of the night, sobbing, having dreams that I have died in my sleep. Then, he tries everything he can to keep me up, so that I can not fall asleep, therefore can not die in my sleep! The other night we were up until 3am convincing him that I am going to wake up in the morning. He is also struggling with anger towards God. He told me that he wasn't ready to have Jesus live in his heart yet! When I pressed him about it, he started crying, "You just don't know what I am going through! I am just not ready yet!" He is right! I have no idea how a 10 year old little boy can process this or even try to understand what he is going through! When my mom had her brain surgery over 10 years ago, I was engaged and already an adult and it was one of the worst times in my life! Thankfully my mom is still with us and helps so much with the kids! But I can NOT imagine being a 10 yr old going through my mom's illness!
Then there is my 8 year old son, Joey! His grades have taken a nose dive BIG TIME!! The teacher will pass out a test and as soon as it hits his desk, he will throw it on the ground saying it is too hard for him. He is also VERY disruptive in his class. He will get up during class time and just start beating on the door for no reason! Just throwing a tantrum and acting out. He doesn't hurt anyone, but his poor teacher is having a really rough time with him! We had a conference and all agreed that she is to continue disciplining him for his actions. I understand he is under stress, but he may not act like that! He also battle DAILY with stomach issues. We took him to the doctor and they said it was caused from stress. Now he is having headaches on top of the stomach pains.
So, what are we doing for them you ask! Well, right before my surgery, they started seeing a counselor. I was so relieved hoping this Dr would be our answered prayer. WRONG!!! The first session was just Jon and I and the Dr brought up the money situation and started coming up with shady ways to get our insurance to pay for sessions we were not even at to compensate for our $50 weekly, co pay, which we never even said that we could not afford!! Sure, that's all we need is for our insurance to find out we are committing fraud and drop us!! So, we politely told him that we were fine with the co pay, we would come up with the money somehow! So the 2nd session he wanted to see just Joey. Jon went with him and I stayed home because I had just had chemo. So they came home and Jon said that for half the session, the Dr was talking about payment AGAIN, saying that for some reason our insurance doesn't pay him as much as others do, blah, blah, blah. THAT WAS IT FOR ME!! I was livid! He cared more about money and getting paid then helping my poor kids who are going through the worst time of their lives!! So we called him and told him we would not be returning.
Now what? While I was in the hospital, I asked to see the social worker. I let her know what was going on and she gave me information about a kids group therapy support group called Kids Konnected. It is free and it meets 2 times a month and also does different activities such as summer camps and things like that. It meets at UCI medical center and the next meeting is tomorrow night! I know this might not be as good as a personal counselor (we are still looking for a new one) but it is a start. You can check out Kids Konnected at www.kidskonnected.org
So I that is how the kids are, here is my update!!! I went to my last appointment with my surgeon on Friday. He looked over my incision sites and the site where the Stoma (area where the colostomy bag connected to my body) was healing and said, "YOU ARE DONE!!" He said I have healed up nicely and released me from his care back to my oncologist and said to go back as soon as I can and start chemo again. He hugged me and said, "Don't take this the wrong way but I don't ever want to see you in my OR ever again!!" I agreed!! I thanked him for changing my life not once but twice! He told me to make sure I keep in touch with him and then said for me to go straight upstairs and make an appointment with Dr Panares (my oncologist) So we did. Jon and I went back up to the 2nd floor of St Jude Plaza and I just wanted to cry!! My days of pretending I don't have this nightmare growing inside me is over!! Reality hit and hit hard. I had a lump in my throat the entire time I was up there. I went to the receptionist and made the earliest appointment I could because I have been off so long. They made it for Tuesday the 22nd and told me I will find out then when they can fit me in for chemo. The problem is, everyone is trying to get their chemo done before the holiday weekend. I know my time is short before I go back to dreaded chemo. So I did what every woman in my position would do, I got a pedicure before it was too late!!! LOL!! I can't remember the last time I had one and once you start chemo you can't get them anymore. Now its back to the days of chemo, getting sick and planning my life around the two!
My prayer requests are.... For my kids to get the help they need and also pray for me to be able to jump back into the chemo routine and for no new growth of any cancer while I was off for the past two plus months!! Keep praying, He is listening!!
We have been dealing with our 10 yr old, Jonny, waking up in the middle of the night, sobbing, having dreams that I have died in my sleep. Then, he tries everything he can to keep me up, so that I can not fall asleep, therefore can not die in my sleep! The other night we were up until 3am convincing him that I am going to wake up in the morning. He is also struggling with anger towards God. He told me that he wasn't ready to have Jesus live in his heart yet! When I pressed him about it, he started crying, "You just don't know what I am going through! I am just not ready yet!" He is right! I have no idea how a 10 year old little boy can process this or even try to understand what he is going through! When my mom had her brain surgery over 10 years ago, I was engaged and already an adult and it was one of the worst times in my life! Thankfully my mom is still with us and helps so much with the kids! But I can NOT imagine being a 10 yr old going through my mom's illness!
Then there is my 8 year old son, Joey! His grades have taken a nose dive BIG TIME!! The teacher will pass out a test and as soon as it hits his desk, he will throw it on the ground saying it is too hard for him. He is also VERY disruptive in his class. He will get up during class time and just start beating on the door for no reason! Just throwing a tantrum and acting out. He doesn't hurt anyone, but his poor teacher is having a really rough time with him! We had a conference and all agreed that she is to continue disciplining him for his actions. I understand he is under stress, but he may not act like that! He also battle DAILY with stomach issues. We took him to the doctor and they said it was caused from stress. Now he is having headaches on top of the stomach pains.
So, what are we doing for them you ask! Well, right before my surgery, they started seeing a counselor. I was so relieved hoping this Dr would be our answered prayer. WRONG!!! The first session was just Jon and I and the Dr brought up the money situation and started coming up with shady ways to get our insurance to pay for sessions we were not even at to compensate for our $50 weekly, co pay, which we never even said that we could not afford!! Sure, that's all we need is for our insurance to find out we are committing fraud and drop us!! So, we politely told him that we were fine with the co pay, we would come up with the money somehow! So the 2nd session he wanted to see just Joey. Jon went with him and I stayed home because I had just had chemo. So they came home and Jon said that for half the session, the Dr was talking about payment AGAIN, saying that for some reason our insurance doesn't pay him as much as others do, blah, blah, blah. THAT WAS IT FOR ME!! I was livid! He cared more about money and getting paid then helping my poor kids who are going through the worst time of their lives!! So we called him and told him we would not be returning.
Now what? While I was in the hospital, I asked to see the social worker. I let her know what was going on and she gave me information about a kids group therapy support group called Kids Konnected. It is free and it meets 2 times a month and also does different activities such as summer camps and things like that. It meets at UCI medical center and the next meeting is tomorrow night! I know this might not be as good as a personal counselor (we are still looking for a new one) but it is a start. You can check out Kids Konnected at www.kidskonnected.org
So I that is how the kids are, here is my update!!! I went to my last appointment with my surgeon on Friday. He looked over my incision sites and the site where the Stoma (area where the colostomy bag connected to my body) was healing and said, "YOU ARE DONE!!" He said I have healed up nicely and released me from his care back to my oncologist and said to go back as soon as I can and start chemo again. He hugged me and said, "Don't take this the wrong way but I don't ever want to see you in my OR ever again!!" I agreed!! I thanked him for changing my life not once but twice! He told me to make sure I keep in touch with him and then said for me to go straight upstairs and make an appointment with Dr Panares (my oncologist) So we did. Jon and I went back up to the 2nd floor of St Jude Plaza and I just wanted to cry!! My days of pretending I don't have this nightmare growing inside me is over!! Reality hit and hit hard. I had a lump in my throat the entire time I was up there. I went to the receptionist and made the earliest appointment I could because I have been off so long. They made it for Tuesday the 22nd and told me I will find out then when they can fit me in for chemo. The problem is, everyone is trying to get their chemo done before the holiday weekend. I know my time is short before I go back to dreaded chemo. So I did what every woman in my position would do, I got a pedicure before it was too late!!! LOL!! I can't remember the last time I had one and once you start chemo you can't get them anymore. Now its back to the days of chemo, getting sick and planning my life around the two!
My prayer requests are.... For my kids to get the help they need and also pray for me to be able to jump back into the chemo routine and for no new growth of any cancer while I was off for the past two plus months!! Keep praying, He is listening!!
Monday, May 7, 2012
Well, since Jon is working late again tonight, I thought I would update you!!
Last Friday, May 4th, I went back to Dr. D. He removed all the staples and said the incision sites were looking good. There is one area of concern, the site where my Stoma (the spot where my bag connected to my body) was is not closing up as quickly as he would like. There is still a hole there and it is healing inside, out. Which he said was normal for it to do. He gave me Silver Nitrate to help heal the areas that are still opened, there are 4 spots. It sounds worse than it is, but I really would like them to all seal up so I can stop stressing every time I shower! I go back in 2 weeks and he will decide then if I am ready to go back to chemo. I suspect, I will get the green light as long as my "raw spots" (as he called them) are healed up like they should be!
Physically, I am doing good. I am down to about 3 pain pills a day. 2 Dilaudid and 1 Morphine. I don't take them during the day anymore because I want to be completely "there" for the kids while Jon is at work. I am back to doing most everything I was before. I am not picking up Caylee as much as I used to, (I am not supposed to be doing it at all, but explain that to a 2 year old) I have most all my strength back and have not used a wheel chair at all since leaving the hospital. Like I mentioned before, I am just getting frustrated with the areas on the incision that are still not closed. I am DONE with Jon having to change bandages for me and nursing me back to health. He does not deserve this. He did everything for me when it came to my bag, so he was as excited, if not more excited than I was to get rid of it!! Now he has to deal with this!
I do have a PRAISE REPORT!!! My friend, Julie Nelson, was diagnosed with stage 2 breast cancer! She is a couple years older than me and is married with 2 young children! Her entire family (parents included) have been through the ringer the past couple months! But I am so happy to report she had her last chemo and she is having her last surgery on June 15th!!! I am so happy for her and her family to start getting back to their new normal!! CONGRATULATIONS JULIE!!! Praise God!! I did think that I got cancer because somehow I was not a good enough Christian. Like it was a punishment or something. But when I found out Julie had cancer, I knew that wasn't the case because Julie is one of the most God fearing, Jesus loving, Christians I have ever met. I was so fortunate to spend some time with her before she had her last chemo session. She had a chance to come to visit from Colorado 2 Sundays ago and it was really nice to talk to someone who is going through the same things I am going through!
But, I wouldn't be who I am without a prayer request!! Its a big one!! Another friend of mine that I went to high school with, Tyler, was just diagnosed with a 2.5 cm cyst around the area of his colon/rectum, He will be having a endoscopy and colonoscopy on Monday, May 14th. They will be doing a biopsy to make sure its not cancer. PLEASE PRAY IT IS NOT CANCER!!! He is married to a wonderful woman named Star and have 2 young boys under the age 10 years old. After the procedures on Monday, they will be scheduling him for surgery where they will take out some of his intestines and rectum. They will be putting a colostomy bag on him for 3 to 6 months. So he will literally be 9 months behind me in all of this. As my chapter with the bag and taking out my colon and intestines close, his is just beginning. Please keep him and his whole family in your prayers. They really need them right now! I am just so happy that they have Jesus!! Because I honestly don't know how people who don't have the Lord in their lives go through this!
Well, that is all for now friends! I love all of you and thank you so much for all the prayers. God is listening and healing me!! On June 4th it will be a year of battling this horrible disease! I don't know if it's been the longest year of my life or the shortest!! I just know that I was WAY more sick a year ago than I am today!! I am still me!! Planning Mother's Day, baby showers, vacations and VBS!! (Just to name a few) Who says stay at home moms have it easy?!! HA!! I love that my husband tells me all the time, "I don't envy you staying home with the kids!!" I am so glad he realizes the work that goes into raising 3 Jesus loving children!! Right now, my life is too busy for cancer, but I guess I will have to pencil in chemo sometime soon! BUMMER!!!
Last Friday, May 4th, I went back to Dr. D. He removed all the staples and said the incision sites were looking good. There is one area of concern, the site where my Stoma (the spot where my bag connected to my body) was is not closing up as quickly as he would like. There is still a hole there and it is healing inside, out. Which he said was normal for it to do. He gave me Silver Nitrate to help heal the areas that are still opened, there are 4 spots. It sounds worse than it is, but I really would like them to all seal up so I can stop stressing every time I shower! I go back in 2 weeks and he will decide then if I am ready to go back to chemo. I suspect, I will get the green light as long as my "raw spots" (as he called them) are healed up like they should be!
Physically, I am doing good. I am down to about 3 pain pills a day. 2 Dilaudid and 1 Morphine. I don't take them during the day anymore because I want to be completely "there" for the kids while Jon is at work. I am back to doing most everything I was before. I am not picking up Caylee as much as I used to, (I am not supposed to be doing it at all, but explain that to a 2 year old) I have most all my strength back and have not used a wheel chair at all since leaving the hospital. Like I mentioned before, I am just getting frustrated with the areas on the incision that are still not closed. I am DONE with Jon having to change bandages for me and nursing me back to health. He does not deserve this. He did everything for me when it came to my bag, so he was as excited, if not more excited than I was to get rid of it!! Now he has to deal with this!
I do have a PRAISE REPORT!!! My friend, Julie Nelson, was diagnosed with stage 2 breast cancer! She is a couple years older than me and is married with 2 young children! Her entire family (parents included) have been through the ringer the past couple months! But I am so happy to report she had her last chemo and she is having her last surgery on June 15th!!! I am so happy for her and her family to start getting back to their new normal!! CONGRATULATIONS JULIE!!! Praise God!! I did think that I got cancer because somehow I was not a good enough Christian. Like it was a punishment or something. But when I found out Julie had cancer, I knew that wasn't the case because Julie is one of the most God fearing, Jesus loving, Christians I have ever met. I was so fortunate to spend some time with her before she had her last chemo session. She had a chance to come to visit from Colorado 2 Sundays ago and it was really nice to talk to someone who is going through the same things I am going through!
But, I wouldn't be who I am without a prayer request!! Its a big one!! Another friend of mine that I went to high school with, Tyler, was just diagnosed with a 2.5 cm cyst around the area of his colon/rectum, He will be having a endoscopy and colonoscopy on Monday, May 14th. They will be doing a biopsy to make sure its not cancer. PLEASE PRAY IT IS NOT CANCER!!! He is married to a wonderful woman named Star and have 2 young boys under the age 10 years old. After the procedures on Monday, they will be scheduling him for surgery where they will take out some of his intestines and rectum. They will be putting a colostomy bag on him for 3 to 6 months. So he will literally be 9 months behind me in all of this. As my chapter with the bag and taking out my colon and intestines close, his is just beginning. Please keep him and his whole family in your prayers. They really need them right now! I am just so happy that they have Jesus!! Because I honestly don't know how people who don't have the Lord in their lives go through this!
Well, that is all for now friends! I love all of you and thank you so much for all the prayers. God is listening and healing me!! On June 4th it will be a year of battling this horrible disease! I don't know if it's been the longest year of my life or the shortest!! I just know that I was WAY more sick a year ago than I am today!! I am still me!! Planning Mother's Day, baby showers, vacations and VBS!! (Just to name a few) Who says stay at home moms have it easy?!! HA!! I love that my husband tells me all the time, "I don't envy you staying home with the kids!!" I am so glad he realizes the work that goes into raising 3 Jesus loving children!! Right now, my life is too busy for cancer, but I guess I will have to pencil in chemo sometime soon! BUMMER!!!
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