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!!
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