I have had a whirlwind of adventures in the last couple weeks! Not all adventures are fun. I will start back with the appointment with Dr Paneres (at St Jude) to discuss my options. I went back to him and he pretty had spoke to the UCI doctor and agreed with her. He did seem pretty leery about me going on this new drug, Stivarga. He told Jon and I that the longest ANY of his patients that he put on this particular drug lasted on the drug a whole 5 DAYS since the day they started the drug. Yep! You heard me correctly, 5 days and they either choose to go off because the side effects are too harsh or the Dr let them know their side effects were too harsh so he took them off the drug. If I am going to get the side effects, they will hit by the end of the first week. They hit hard and fast!! But, if I continue to do well, they up the dose 40 mgs more and continue this until I am on the full dose of 160 mgs. This drug has NASTY side effects! The most dangerous ones are high blood pressure and it messes with your liver!. We are not talking a drug that slowly raises your blood pressure. This drug makes your BP SPIKE THRU THE ROOF to the point that you need to be hospitalized. One minute, you are completely normal, the next you are needing a visit to the ER! This is the most scary side effect for me, as I already have high blood pressure and am on 2 prescriptions to control it now. The good thing about that is, I know what the symptoms of high BP is and know a few tricks to bring it down on my own. I also have a hospital grade BP monitor here at home and can monitor my BP at any given moment. Also, they said that since I am already on BP meds, that actually works to my benefit and if something happens they can just adjust my meds as needed. The liver... I have to pay attention to make sure my urine is not turning darker than it is or super lighter than it is. The reason I am not really concerned with this one is, the dr said he will be checking my liver OFTEN thru blood work and they should be able to catch that there is something wrong WAY before I exhibit any symptoms of liver damage.
Another nasty side effect is that this medicine will cause your hands and feet to discolor, burn, blister, peel, crack and bleed to the point that you can not walk! Here is the plus side (for me personally) There is one other drug that causes this same side effect, not to the degree that Stivarga hits, but it can get pretty bad causing people to go off this other drug also. I was on that other drug for over a year and the ONLY symptom that happened to me was my hands and bottoms of my feet looked like there were newsprint all over them! SHOUT OUT TO POSH'S HEALER STICK AND FRESH CREAMY MILK BODY BUTTER FOR THAT!! They never burned, hurt, cracked, got dry, NADA! So, they think that if I continue with that same regiment of Posh products, I will do well in this department also! This drug has also been known to cause sores in your mouth, which makes eating anything hot, cold, salty or spicy, not such a pleasant task. Then we have what we cancer patients like to call, "Chemo Brain". If you have spent any amount of time with me, you will know I have this BAD! This new drug actually intensifies that. For example, my chemo brain now would be something as annoying as repeating what I have said a billion times to someone and I have NO remembrance at all of telling that person at ALL! Even when they start telling me where we were when I said it or why I even brought it up! My good friends and family pretty much just humor me and let me say something over and over again. There are some people tho, that will correct me, cut me off (Lovingly) saying I already mentioned that! This sometimes hurts me, I feel like I am annoying them to the point, I will try not to say too much because I look stupid always repeating. I just want to be as normal as possible and when someone (Even in a lovingly way) tells me I have said it a bajillion times, I want to run and hide and try to become the smart woman I once was! With chemo brain, it is common to walk into a room and forget why you came in there. You forget appointments, You repeat yourself like a parrot. But Stivarga brain, kicks that up a notch. Not only will you have chemo brain, but you will also forget every day things like your telephone number, how to sign your name, directions to your house, etc... So this should be fun! Then you have your every day run of the mill chemo side effects. Nausea, vomiting, diarrhea, constipation, fatigue, sleeplessness, yada yada yada... Those we know I can handle! I was told that the first week of taking Stivarga is the most dangerous. If you are going to have side effects, they show their ugly faces in the first week. So my doctor wanted to make sure all the other chemo is completely out of my system before I started this new one, We did not want WWIII to start in my body because we had overlapping chemos! This drug is strong enough without needing left over chemo in my body to help take over my body!. My dr at St Jude admitted he had learned from the UCI dr to start me on a half dose and gradually increase from there. So I will be his first patient to start at a half dose and will be the first person to make it FAR passed 5 days!! Hee Hee... TOO SOON TO CLAIM VICTORY? I don't think so! I am coming to the battle well prepared! So we wrap up our appointment and plan for me to start this Stivarga on March 23rd! We wanted to have some down time before the fight, the calm before the storm! We REALLY needed time to pray! So we felt this situation, about taking the Stivarga, with Dr Paneres (my St Jude oncologist) was not feeling the same way the UCI dr felt. She, (UCI dr) made me think that with my passed history with handling chemo side effects, I will be just fine. Then, I have MY actual oncologist Roy Paneres having me think that I won't make it thru the first week!! So, we left the appointment not as hopeful! But, just like I felt that God was whispering in my ear that the last CT Scan I had, was going to come back with growth and my life would be changing drastically. I have the same tugging at my heart, but this time it is telling me, "No matter what happens, YOU ARE going to be OK!" It;s not so much an audio voice, but its like a peace washes over me and my anxiety is under control. I haven't had any major mood swings, just going with the flow! I just feel God's loving arms around me at this time! I just wish Dr P would get the same message from God, so he can quit being such a Debbie Downer!
After the appointment with Dr P ended, we scheduled our next appointment to be on April 6th, right in the middle of my first cycle of the drug. There he will do a blood test to check my CEA (cancer) numbers and check on my liver function. I am thinking we will also be discussing when I should do my next CT scan also. We leave and decide, until I start Stivarga in 2 weeks, LET'S TAKE A CANCER BREAK! Sounds like a awfully good idea to me, since there really wasn't anything I could do on the Cancer front at this time!
So, the first few days pass and I start getting a little nervous that this horrible drug is chasing behind me and starting to catch up! I only have a little over ONE WEEK LEFT!
So, what you think happens on good ol' Friday the 13th of March.... YEP, ER TRIP!!!!! Oh man oh man! Where to begin with that mess? I knew I was having a small bowel obstruction.:What it is, is because I have had so many abdominal surgeries, my
intestines have scar tissue. This scar tissue will randomly start
moving around and TWIST my intestine. Usually I can tough them out at home, but this time, I couldn't take the pain! I was throwing up and couldn't get comfortable or anything. I looked at Jon and said, "We need to go to the ER, This one is bad!" So I get cleaned up and head out the door at 11pm, THE ER WAS PACKED!! People had been waiting for over 5 hours to be seen! It was a straight HOT MESS! So, because of my condition, I got called back right away! But I was in a LOT of pain and could not take my own meds bc if they needed to do surgery to untwist the scar tissue, then they would have to wait even longer bc I wouldn't have been allowed to be put under with how many pain killers I take in a day! So, I am in pain, I usually take 200 mg of Kaiden 2 times a day, I take (4) 8mg tabs of dilaudid every 4 hours, 1 30mg of Oxycontin every 4 hours amd then 100mg of Morphine before bed. Then I take Methadone 3 times a day! So I finally get into the back ER rooms and I am waiting for someone to do an IV so that I can get some pain relief there! Finally the nurse shows up and just looks... new and confused!! GREAT!! So she tried 5 TIMES to hit a vein, all over my arms, with no luck!! I looked like a junkie with so many bruises in different areas! Finally, I said, "JUST STOP!! We are not getting anywhere with this and I need my IV to talk my meds that were now over due! So I looked at her and said, "Have you done a port before?" She looked at me meekly and said, "Oh ya! I can do them!" So I took her hand and had her feel each bump, the circumference of it, Teaching her how to do a port while laying in a hospital bed. She came back with all the stuff to access my port and I looked at her and said, "Ok, we need to think this through, do you have everything you need?!" She said she did, I said, "Look again!" She still didn't see the problem! I said, "Do you remember what the first question you are supposed to ask someone with a port?" She thought about it as she was cleaning off my chest to insert the needle into. Then it hit her, I looked at her and said, "Yep, you know! What KIND of port do you have?!" I could tell she was embarrassed but I was not in the mood to play nurse right now! I wanted to be our of pain and cuddled and have all this behind me!! So she picked up the needle and looked at it and said, "This is the needle I will be using to put into your port!" I said, "Oh NO YOU ARE NOT! That is NOT a Power Port needle!! She looked as thou she was going to cry. She ran out of the toom, Jon and I started praying our guts out! She came back and said, "Ok! Is this the one I am supposed to use?" I said, "Yes, lets get this in and going!" So I taught her where to put the needle, to count ONE... TWO... Three and as you say 3, push the needle in! SHE DID IT!! Had great blood return any everything! So remember at this time I am hours from having my pain meds. She came at me with a 1 mg IV of dilaudid. I tried explaining to her that I am on 32 mgs and 1 mg is a JOKE! Needless to say, it was a long, sleepless night and I did in fact have a blockage, I went into withdraw while in the hospital! I couldn't eat but,,, NO SURGERY!!! So they let me go on Sunday and Jon took Monday off so we could catch up on sleep and then that whole following week I had problems, but they are clearing up now!
The following Friday I had another dr call me in to "teach" me more about Stivarga. Pretty much knew everything I could know at this point. She had the same thoughts as the UCI dr, that I am going to be just fine. She brought me over a journal to write my symptoms down everyday, keep track of when I took it and to log my BP numbers. She also said she wanted us to call when I actually take the meds so she can write it down on her calendar and keep track of where I am at on Stivarga at all times.
So today, at 10am , I took my first dose. I had Jon call the dr and let her know we took it and she said, "Ok! I didn't want to scare you, but this hour is the most critical!!! If she is going to have an allergic reaction, it will be now until 11am, so keep a close eye on her! Umm!!! THANKS A LOT!! So of course any bump, pinch or ache was magnified. but I made it just fine! Then Jon took the rest of the week off in case my symptoms do end up showing up!! So to pass the time, my mom and I filled 300 plastic eggs for the Easter Egg hunt here on Sunday, we are doing an Easter on the Sunfsy before because we have Easter and my nephews birthday up in Victorville on Easter Sunday and a lot of people can't make it up there! After we filled those eggs, Jon and i went shopping at Walmart! I also have been constantly taking my BP and it has been good all day! We are still not out of the woods yet! But PLEASE KEEP PRAYING!! HE REALLY IS LISTENING!!! NO SIDE EFFECTS!! I have a family to run and love on!!
Tuesday, March 24, 2015
Saturday, March 7, 2015
Off to UCI
A few days after my appointment, where Dr P told me that I would not be doing chemo anymore, I got a phone call from Dr Seery's office at UCI. They made my appointment for March 5th. I was so excited because that gave me time to live a little bit before our next step in our cancer journey. Then the nurse who was booking the appointment said, "Oh no! I just saw that your dr put a rush on this! I will need to call you back and make an appointment for a sooner date." I said, "Let me talk to my dr first! Maybe the 5th will be ok with him! I have so much I was to do before I start at UCI! I think he will say it will be ok to keep this date!" She agreed and told me that she was leaving it to me to change the appointment if he wants a sooner date! Well, thankfully, Dr P said that the March 5th appointment was just fine! YAY!! It's the little miracles, where things just work out like they are supposed to, where you really see God's fingerprints! I have learned to stop looking for these, "PART THE RED SEAS", miracles. (Not that those are not important too) But when I really feel like God's hand is on me, is when its just the little things that would only matter to me and seem so insignificant to other's, that I know my God is still walking with me!
So being off chemo this time is a little different than the other times. I don't really feel like I have been off chemo for over a month! Usually by now, I am feeling almost normal. As of tonight, I still feel like the poison is running thru my veins. I don't have the "vacation" that I usually have, it kind of worries me, but then again, I just had my CT scan a little over a month ago and there was only a slight growth. Maybe I am just pushing myself harder than normal. Jon and I had decided that we would not live like I have cancer for the time that I am off chemo! We would live life to the fullest and keep making as many memories with our kids as we can! For Christmas, Jon's sister in law Angie, got her father to get us 2 tickets to Disneyland and sign 3 of us into Disneyland! (If you know me, this is the BEST Christmas gift in the world! My personal heaven would be DISNEYLAND!) So on Josiah's 11th birthday (Feb 12th) we surprised the kids and took them to Disneyland for the day! I got a wheelchair because I knew there was no way I could walk around Disneyland all day! I was worried I was going to embarrass the boys, but they didn't even bat an eye! This was our first trip to Disneyland that the kids were all tall enough to go on the big kid rides! So this was the first trip that I was not sitting at the exit of Star Tours or Big Thunder Mountain, with a stroller filled with a crabby baby! It was the absolute BEST Disneyland trip we have gone on as a family!
Then on the 17th of February, Jon and I celebrated our 14th wedding anniversary! IT WAS AMAZING!!! Jon and I went to dinner that night at Red Lobster. Then we picked up the kids. Jon bought a top tier of a wedding cake, decorated in our wedding colors and in one of the flavors that our wedding cake had! (Chocolate cake with raspberry filling) Then he had dug around our storage unit for hours earlier that day and he found our wedding video! We had to borrow a VCR from our neighbors, but after we cut the cake and ate the cake with the kids and my parents, we all sat down to watch our video (this was the kids and my parents first time seeing it!) It was beautiful!! The kids were stuck to it like glue! Remarking how young (and thin) everyone looked. It was the most romantic anniversary we have ever celebrated! But it doesn't stop there! We decided to go to Las Vegas to continue or celebration. Jon and I left on Wednesday the 25th and then on Friday the 27th, my parents came up and brought the kids with them! It was a great trip! We all had a blast and really needed that time away. We knew our "cancer vacation" was coming to a close and quickly! On Saturday night (the 28th), I laid in bed, wide awake. Looking at my husband and children and cried (quietly) my eyes out! It is so hard to not think, "This is the last night we will ever be in Las Vegas together ever again!" I try really hard not to let the enemy take my joy, but it is getting harder and harder with each day that passes! I remember driving out of Disneyland's parking structure and the tears just came out of nowhere! I try not to let anyone see, but that time, Jon reached over and squeezed my hand, letting me know he was feeling it too!
So March 5th came sooner than I would have liked it! I had been literally shaking for a full 24 hours before my appointment! I kept complaining to Jon, "I don't want to go!! Don't make me do this! Let's keep living like I have no cancer!" Of course being the amazing husband he is, he kept telling me, "We don't have to do anything you don't want to do! If you don't want to do clinical trials, we won't!!! We will walk out and live out the rest of our life together! But, I think it is worth it to just hear what they have to offer." UGH!!! FINE!!! We left for UCI at 2pm, giving us 30 minutes for traffic and to get lost. Well, we pulled right up! Found the cancer building right away. We waited outside for my best friend, Kira, to meet us there. She is good at hearing the good, bad and the ugly and make notes of it all!
So we all go in, all shaking in our boots! We go up to the 2nd floor, check in and I fill out a few new patient forms, when we get called back. We all go into a exam room. There is a nurse who takes my vitals and starts filling in my information into the computer. She puts in all my vitals, asked me questions like if I smoke, drink, etc.. Then she asks to list my medications. HOLY COW! So I start off with my pain meds, around the 4th med, she looked at me and said, is that all? Jon and I looked at her and started laughing and said, "Oh no! We are just getting started!" It took us literally 15 minutes to list everything I take on a daily basis! The nurse's head was spinning! Dr Seery's assistant tried 2 different times to come in and we were not done yet! We finally just said, "You have the just of them! We are good now!" The nurse started laughing and said, "I don't even know how you function!!" Ya! Neither do I lady!! So she leaves and the assistant comes in! He introduces himself and says, "Don't worry about telling me anything, I have studied you and know your entire history!" He knew it all without even looking at notes! He knew dates of surgeries, he knew the date I was diagnosed and how I was diagnosed... It was quite impressive! So he starts telling us the plan of attack. He said that Dr Seery would be in, in a few minutes and answer any questions we had about anything! He said that there is a drug that is FDA approved, called Stivarga. (Jon and I had heard of it 2 years ago, when it was first FDA approved, from Dr P. He told us there was a new drug that was just approved and it was sort of a "super Avastin" and he thought I would be a great candidate for it since I responded so well to Avastin.) I said, "This is the drug that is sort of a "super Avastin" correct?" and he said, it was from the same family. He said it was kind of like Avastin, in that it cuts off the blood supply to the tumors, therefore not feeding the tumors and they stop growing. The down side is the side effects! THEY ARE MONSTERS! Most people have to stop taking the Stivarga because the side effects are too much to handle and ruining their quality of life. Other than the normal, vomiting, hair loss, feel crummy side effects. The worst side effects tear up the palms of your hands and the bottoms of your feet. Pretty much the drug causes discoloration, boils, cracks, peeling, bleeding, etc... on the palms of your hands and the bottom of your feet. The same side effect as the drug Xeloda, I had been on for over a year and all it did was cause discoloration to my hands and feet. People described them as looking like I had been reading a newspaper and the print was still on my hands. They never cracked, peeled or bled! I would slather them in a body butter from Posh (of course) that was a shea butter based lotion and also would rub Posh's, Healer Stick (100% shea butter stick) all over them constantly! So I felt confident that I was going to be just fine! I had Posh on my side! He looked at me like, I don't think so! He said, "These side effects are REALLY, REALLY BAD!! Most people can not stay on the drug and the people who do stay on it, have a lot of the side effects and just live with it!" I was feeling discouraged! But then he said, "We also have another card in our hands to play! We will study your cancer and try to find a mutation. No 2 cancers are the same, that is why not all chemo's work for every person! They have mutations in each of the cancers that make them all different. So we will look for a mutation that is not only in your colon cancer but in a different type of cancer, say, Kidney cancer, Then we will use the chemo that was actually made for kidney cancer to try and kill your cancer which has that same mutation!" I started feeling something I hadn't felt in a long time HOPE!!!! It was a BEAUTIFUL feeling!! Here I was, begging Jon to not make me go and this guy is actually talking to me like we are going to attack this cancer finally! It was amazing!! So then he said, "After that we will look into clinical trials!"
So then Dr Seery came in! NOT AT ALL WHAT I WAS PICTURING! She was this young, beautiful, blonde woman, who looked like someone I would hang out with! She introduced herself and shook our hands. She started off by saying how good I looked and that she was kind of wondering why my dr would send me to her! She repeated everything that her assistant had said about our course of action. She then said that the normal dose of the Stivarga was 160mgs. But she is going to recommend that my dr start at 80mgs and slowly increase from there. She said that they have had WAY better success in people tolerating the side effects that way. She also said that unlike other cancer drugs/chemo's, we would know within the first week of taking Stivarga, if the side effects are going to be tolerable or not. She said the side effects hit hard and fast with this drug. She asked if there were any questions. Kira asked, "How long can a person be on Stivarga?" She said, "Great question!! As long as the person can tolerate it! There was a woman, who is right down the hall right now, who was in really bad shape! I didn't think she had a chance! But we put her on Stivarga, that was over a YEAR ago and she just got back from a vacation out of the country!!!" We just sat there staring at each other with our mouths hanging wide opened!! A YEAR??? Here I was thinking I had maybe a couple months left!! HOPE!!! HOPE!!!!! HOPE!!!!!!
Then she went into the whole mutation thing. Saying how they would test my tumor and study it to find a mutation that is in a different cancer. She then said, "So when you are getting biopsied, tell them you need 3 cores!!! Usually what happens is they don't get enough and you have to repeat the procedure!" I looked at her and said, "WHAT???!!! They already have my tumor! They kept it when my colon blew in 2011! She said, "That was YEARS ago! It has probably mutated since then!" I said, "So, like a liver biopsy?" Dr Seery said, "Yes probably" I said, "NOPE!! I AM NOT DOING IT!! So you all better PRAY this Stivarga works because I will NOT be doing another liver biopsy! I have already said I would never do it again!" THEY ARE HORRIBLE!! I can not even imagine doing one again! Not to mention, they can't even put you to sleep because they need you to hold your breath and release it at certain times! It is HORRIBLE!!! So please please please pray the Stivarga works for me!!!
After that fiasco, she told me she wants to refer me to her genetic counselor. They think there may be a link between my mom's Neurofibromitosis and the colon cancer. She also said that doing this testing will also make sure my kids don't fall thru the cracks and miss getting tested for colon cancer. She said that the "old" rule of thumb was to have the kids tested 10 years before my diagnosis, which would make them 23 years old when they have their first Colonoscopy. But she says she is pretty sure her genetic counselor will have them tested before 23! She said the genetic testing would be done there at UCI and it would only benefit my kids and future family members by doing this! So of course, this is not an option, I will be doing it! (unless it involves a liver biopsy! LOL!)
So after going over everything with her, she told us that there actually was not a clinical trial there at UCI that would fit my needs! Which was a complete bummer because I LOVED HER!! I would LOVE for her to be my dr from here on out! She said she was sending me back to Dr P, then she said, "I am actually a little confused on why he sent you to me in the first place! You are no where NEAR clinical trials!" and said she would call him tomorrow with her recommendations on what to do with me now!
Next step is going to see my dr back at St Jude. I have an appt with him on Monday and we will go over what we will be doing next. I do want to take another 2 weeks off before starting any new drugs. I just want to make sure all the other chemo's and drugs are out of my system because Dr Seery said that the Stivarga's side effects will be amplified if I still have Xeloda or CPT-11 in my system! So I don't want to risk that AT ALL!
WE HAVE HOPE!!! We always have HOPE with Christ, but sometimes when you are in the fire, you just plain forget!! Keep praying, He is listening! I love you all!!
So being off chemo this time is a little different than the other times. I don't really feel like I have been off chemo for over a month! Usually by now, I am feeling almost normal. As of tonight, I still feel like the poison is running thru my veins. I don't have the "vacation" that I usually have, it kind of worries me, but then again, I just had my CT scan a little over a month ago and there was only a slight growth. Maybe I am just pushing myself harder than normal. Jon and I had decided that we would not live like I have cancer for the time that I am off chemo! We would live life to the fullest and keep making as many memories with our kids as we can! For Christmas, Jon's sister in law Angie, got her father to get us 2 tickets to Disneyland and sign 3 of us into Disneyland! (If you know me, this is the BEST Christmas gift in the world! My personal heaven would be DISNEYLAND!) So on Josiah's 11th birthday (Feb 12th) we surprised the kids and took them to Disneyland for the day! I got a wheelchair because I knew there was no way I could walk around Disneyland all day! I was worried I was going to embarrass the boys, but they didn't even bat an eye! This was our first trip to Disneyland that the kids were all tall enough to go on the big kid rides! So this was the first trip that I was not sitting at the exit of Star Tours or Big Thunder Mountain, with a stroller filled with a crabby baby! It was the absolute BEST Disneyland trip we have gone on as a family!
Then on the 17th of February, Jon and I celebrated our 14th wedding anniversary! IT WAS AMAZING!!! Jon and I went to dinner that night at Red Lobster. Then we picked up the kids. Jon bought a top tier of a wedding cake, decorated in our wedding colors and in one of the flavors that our wedding cake had! (Chocolate cake with raspberry filling) Then he had dug around our storage unit for hours earlier that day and he found our wedding video! We had to borrow a VCR from our neighbors, but after we cut the cake and ate the cake with the kids and my parents, we all sat down to watch our video (this was the kids and my parents first time seeing it!) It was beautiful!! The kids were stuck to it like glue! Remarking how young (and thin) everyone looked. It was the most romantic anniversary we have ever celebrated! But it doesn't stop there! We decided to go to Las Vegas to continue or celebration. Jon and I left on Wednesday the 25th and then on Friday the 27th, my parents came up and brought the kids with them! It was a great trip! We all had a blast and really needed that time away. We knew our "cancer vacation" was coming to a close and quickly! On Saturday night (the 28th), I laid in bed, wide awake. Looking at my husband and children and cried (quietly) my eyes out! It is so hard to not think, "This is the last night we will ever be in Las Vegas together ever again!" I try really hard not to let the enemy take my joy, but it is getting harder and harder with each day that passes! I remember driving out of Disneyland's parking structure and the tears just came out of nowhere! I try not to let anyone see, but that time, Jon reached over and squeezed my hand, letting me know he was feeling it too!
So March 5th came sooner than I would have liked it! I had been literally shaking for a full 24 hours before my appointment! I kept complaining to Jon, "I don't want to go!! Don't make me do this! Let's keep living like I have no cancer!" Of course being the amazing husband he is, he kept telling me, "We don't have to do anything you don't want to do! If you don't want to do clinical trials, we won't!!! We will walk out and live out the rest of our life together! But, I think it is worth it to just hear what they have to offer." UGH!!! FINE!!! We left for UCI at 2pm, giving us 30 minutes for traffic and to get lost. Well, we pulled right up! Found the cancer building right away. We waited outside for my best friend, Kira, to meet us there. She is good at hearing the good, bad and the ugly and make notes of it all!
So we all go in, all shaking in our boots! We go up to the 2nd floor, check in and I fill out a few new patient forms, when we get called back. We all go into a exam room. There is a nurse who takes my vitals and starts filling in my information into the computer. She puts in all my vitals, asked me questions like if I smoke, drink, etc.. Then she asks to list my medications. HOLY COW! So I start off with my pain meds, around the 4th med, she looked at me and said, is that all? Jon and I looked at her and started laughing and said, "Oh no! We are just getting started!" It took us literally 15 minutes to list everything I take on a daily basis! The nurse's head was spinning! Dr Seery's assistant tried 2 different times to come in and we were not done yet! We finally just said, "You have the just of them! We are good now!" The nurse started laughing and said, "I don't even know how you function!!" Ya! Neither do I lady!! So she leaves and the assistant comes in! He introduces himself and says, "Don't worry about telling me anything, I have studied you and know your entire history!" He knew it all without even looking at notes! He knew dates of surgeries, he knew the date I was diagnosed and how I was diagnosed... It was quite impressive! So he starts telling us the plan of attack. He said that Dr Seery would be in, in a few minutes and answer any questions we had about anything! He said that there is a drug that is FDA approved, called Stivarga. (Jon and I had heard of it 2 years ago, when it was first FDA approved, from Dr P. He told us there was a new drug that was just approved and it was sort of a "super Avastin" and he thought I would be a great candidate for it since I responded so well to Avastin.) I said, "This is the drug that is sort of a "super Avastin" correct?" and he said, it was from the same family. He said it was kind of like Avastin, in that it cuts off the blood supply to the tumors, therefore not feeding the tumors and they stop growing. The down side is the side effects! THEY ARE MONSTERS! Most people have to stop taking the Stivarga because the side effects are too much to handle and ruining their quality of life. Other than the normal, vomiting, hair loss, feel crummy side effects. The worst side effects tear up the palms of your hands and the bottoms of your feet. Pretty much the drug causes discoloration, boils, cracks, peeling, bleeding, etc... on the palms of your hands and the bottom of your feet. The same side effect as the drug Xeloda, I had been on for over a year and all it did was cause discoloration to my hands and feet. People described them as looking like I had been reading a newspaper and the print was still on my hands. They never cracked, peeled or bled! I would slather them in a body butter from Posh (of course) that was a shea butter based lotion and also would rub Posh's, Healer Stick (100% shea butter stick) all over them constantly! So I felt confident that I was going to be just fine! I had Posh on my side! He looked at me like, I don't think so! He said, "These side effects are REALLY, REALLY BAD!! Most people can not stay on the drug and the people who do stay on it, have a lot of the side effects and just live with it!" I was feeling discouraged! But then he said, "We also have another card in our hands to play! We will study your cancer and try to find a mutation. No 2 cancers are the same, that is why not all chemo's work for every person! They have mutations in each of the cancers that make them all different. So we will look for a mutation that is not only in your colon cancer but in a different type of cancer, say, Kidney cancer, Then we will use the chemo that was actually made for kidney cancer to try and kill your cancer which has that same mutation!" I started feeling something I hadn't felt in a long time HOPE!!!! It was a BEAUTIFUL feeling!! Here I was, begging Jon to not make me go and this guy is actually talking to me like we are going to attack this cancer finally! It was amazing!! So then he said, "After that we will look into clinical trials!"
So then Dr Seery came in! NOT AT ALL WHAT I WAS PICTURING! She was this young, beautiful, blonde woman, who looked like someone I would hang out with! She introduced herself and shook our hands. She started off by saying how good I looked and that she was kind of wondering why my dr would send me to her! She repeated everything that her assistant had said about our course of action. She then said that the normal dose of the Stivarga was 160mgs. But she is going to recommend that my dr start at 80mgs and slowly increase from there. She said that they have had WAY better success in people tolerating the side effects that way. She also said that unlike other cancer drugs/chemo's, we would know within the first week of taking Stivarga, if the side effects are going to be tolerable or not. She said the side effects hit hard and fast with this drug. She asked if there were any questions. Kira asked, "How long can a person be on Stivarga?" She said, "Great question!! As long as the person can tolerate it! There was a woman, who is right down the hall right now, who was in really bad shape! I didn't think she had a chance! But we put her on Stivarga, that was over a YEAR ago and she just got back from a vacation out of the country!!!" We just sat there staring at each other with our mouths hanging wide opened!! A YEAR??? Here I was thinking I had maybe a couple months left!! HOPE!!! HOPE!!!!! HOPE!!!!!!
Then she went into the whole mutation thing. Saying how they would test my tumor and study it to find a mutation that is in a different cancer. She then said, "So when you are getting biopsied, tell them you need 3 cores!!! Usually what happens is they don't get enough and you have to repeat the procedure!" I looked at her and said, "WHAT???!!! They already have my tumor! They kept it when my colon blew in 2011! She said, "That was YEARS ago! It has probably mutated since then!" I said, "So, like a liver biopsy?" Dr Seery said, "Yes probably" I said, "NOPE!! I AM NOT DOING IT!! So you all better PRAY this Stivarga works because I will NOT be doing another liver biopsy! I have already said I would never do it again!" THEY ARE HORRIBLE!! I can not even imagine doing one again! Not to mention, they can't even put you to sleep because they need you to hold your breath and release it at certain times! It is HORRIBLE!!! So please please please pray the Stivarga works for me!!!
After that fiasco, she told me she wants to refer me to her genetic counselor. They think there may be a link between my mom's Neurofibromitosis and the colon cancer. She also said that doing this testing will also make sure my kids don't fall thru the cracks and miss getting tested for colon cancer. She said that the "old" rule of thumb was to have the kids tested 10 years before my diagnosis, which would make them 23 years old when they have their first Colonoscopy. But she says she is pretty sure her genetic counselor will have them tested before 23! She said the genetic testing would be done there at UCI and it would only benefit my kids and future family members by doing this! So of course, this is not an option, I will be doing it! (unless it involves a liver biopsy! LOL!)
So after going over everything with her, she told us that there actually was not a clinical trial there at UCI that would fit my needs! Which was a complete bummer because I LOVED HER!! I would LOVE for her to be my dr from here on out! She said she was sending me back to Dr P, then she said, "I am actually a little confused on why he sent you to me in the first place! You are no where NEAR clinical trials!" and said she would call him tomorrow with her recommendations on what to do with me now!
Next step is going to see my dr back at St Jude. I have an appt with him on Monday and we will go over what we will be doing next. I do want to take another 2 weeks off before starting any new drugs. I just want to make sure all the other chemo's and drugs are out of my system because Dr Seery said that the Stivarga's side effects will be amplified if I still have Xeloda or CPT-11 in my system! So I don't want to risk that AT ALL!
WE HAVE HOPE!!! We always have HOPE with Christ, but sometimes when you are in the fire, you just plain forget!! Keep praying, He is listening! I love you all!!
Wednesday, January 28, 2015
Time can slip right threw your fingers!
Wow, I knew I hadn't blogged in awhile, but I didn't realize THIS long! Where do I even begin to start?
Our holidays were amazing! We made it back to our beautiful, warm, cozy cabin for Christmas! It was just our family (My parents, my family, my sister and her family and my brother and his kids) there for 5 days and then my cousin Jason and his girlfriend, came up there to spend Christmas day with us! We had another treat when our AWESOME, neighbors Ana and Todd, came up to play the day after Christmas! It was a great time of games, arts and crafts, baking and cooking, fires roaring in the fireplace, a visit from Good St Nick and us all sleeping under one roof again! It was a great holiday season just being in the midst of God's glory! Nature has a way of just proving there is a God! Its such a beautiful place!
Our New Year was pretty low key! We stayed home and the neighbors came over and we played games all night, laughed and had a great time! At the strike of midnight, I got a hurried kiss from the hubby and out everyone flew for fireworks we saved from the 4th of July (shhhh!) and sparklers! It was actually one of my favorite New Years Eve.
The battle with cancer is blazing on! I have been on chemo without missing a day since June of 2014! It is so such a part of our daily lives, that we plan things saying, "That date won't work, Christi will still be feeling the effects of chemo!" Or "We need to plan the party on this date because that is 3 days before I have to do chemo, so I will be feeling my best" Take "my best" lightly! A lot goes along with that, fatigue, sleeplessness, pains and so on! But, we got the birthdays and holidays all fit into my schedule, with very few changes! I did not miss any chemo, but I did move it around a bit to make that week work for me! So everything was going well, but I started feeling a little more, sluggish, rundown, down right tired to the point I would be in conversation with someone and I would fall asleep! I apologize to all of you who was rudely fallen asleep on! I PROMISE IT WAS ME, NOT YOU! I just chalked it up to being so busy during the holidays! All moms get this way!
When I first got diagnosed, in June of 2011, I had a 9 year old, a 7 year old and a 18 month old. I prayed and prayed, crying out to Jesus to give me more time! I just wanted to make it to see Joey hit the double digits, for Jon and I to be able to celebrate our 20 year anniversary, to see my boy Jonny start to turn into a young man of 13 years and lastly to see my sweet Caylee turn 5. The reason behind this was because one of my first memories was my 5th, Strawberry Shortcake birthday! Which would hopefully mean that Caylee would retain some kind of memory of me! We had the birthday party and it was a blow out! I saved every penny I earned from selling Posh to give her the party of her dreams! It was, of course, the Disney movie Frozen theme! It was beyond amazing! Time was ticking away and the days turned to months and by the time I turned around, Dr P was scheduling me for my next CT Scan! As soon as I set the appointment, I just got this knot in my stomach that this would be the CT that was going to change things in my normally rigid schedule.
Even the day of the scan, I was unusually nervous. I couldn't shake it! As Jon and I walked down the hall to get to the CT room, I turned to him and said, "I have a feeling this scan is going to change and disturb our very abnormal, normal life we had become accustomed to! We had our routine down! I had been ok with this whole cancer thing for quite some time! But I had a feeling that this very short test was going to change all that! Sure enough, it happened... We went in on Monday, January the 26th, for our normal dr appt that we have every time I have chemo! So we go in, my nurse Christie, takes all the vitals, I mention to her about feeling fatigued and rundown. I was also running a slight fever of 99.3, For me, this is high, I usually run around 97, She also marks this on my chart. She leaves and tells us the dr will be in a minute. I take this time to express to Jon that I really think this scan is going to be the life changer! Before we even had a chance to pray, in walks Dr P. He shakes Jon's hand, then mine. He sits down and says, "We have spoke before about you stopping chemo and going to clinical trials when the cancer shows it is resisting the chemo cocktail you are on. I am sorry to say, it is. We knew this day was coming and I have talked to you about this for a while. I also told you that you had to be in a healthy state in order to qualify for clinical trials" All I could do is shake my head. Then he says, "Your scan showed a tiny bit of growth" at that time I exhaled, I had no idea I was even holding my breath! Then he went on, "The problem is, even though you don't have any new cancer, you have the slightest bit of growth, EVERY SINGLE TUMOR GREW!" That was the first time that ever happened! Yes, it had grown and shrank before, but only a few tumors did. This was every single one! At that the room start closing in on me, I think I was on the verge of passing out! So, I said, "what exactly are you trying to say?" He looked at me and said, "When you have growth in all your tumors, that is the sign that your body is rejecting chemo and its just not working! So we are canceling your chemo now and sending you off for clinical trials. USC, UCLA and UCI all have colon cancer research going on there, all you need to do is to choose one." I was in total shock! Even tho I feel God was trying to prepare me for this news, it didn't soften the blow as much as I wish it would have! He then says, "You can not go to a trial where they are first testing out drug, where half of the patients get placebos and the other get the actual drug. You need to go to one that has been going on for years and is almost ready for the FDA to approve it!" I said, "Ok, so which one has the best option for me and we will go with that one!" He says, "Well I normally just send you to USC out of habit because I know the people there, but its really your choice," I asked, "You didn't give them a call to see which one would be the best fit for me?" He just kind of ignored that question and said, "Its really a matter of convenience, go where it would be easiest for you to get there!" I threw up my hands, I could not believe he couldn't just take a few mins out of his day to call around to see which trial would be the best fit for me, and said (in a snarky way), "So pretty much this is a crap shoot! So in that case Jon, just pick on that will be easiest for you to get me there and back!" So he said, sheepishly, "I don't know?? UCI?" With that, he wrote in my chart UCI and he said "they will be calling you soon to make the appointment, so why don't you guys come back here in 3 weeks and we will meet up here and go over everything. They will send me your reports and things like that!" With that we left! So now here I am waiting for a phone call I do not want to answer because I never wanted to do clinical trials, but I will because that is what everyone wants for me... KEEP FIGHTING!! I am, I am also a lot more scared to die than I was when I first got diagnosed. We have made chemo such a part of our lives, that now I think, "HEY! I can do this for the rest of my life! Yes, it does suck, but for the most part we are leading very active, normal as can be, life!" Now its like ripping the bandaid off and exposing the wound all over again!
So we go home and we are down in the dumps. Shed a few tears and together, we felt this was the first day to the end of our lives together. We are pretty shaken, but know we have to tell the boys somehow, we would hate for them to overhear something that they didn't know about and feel like we have betrayed them on top of all this mess.
I call the boys to come and talk to me. I start praying for God to give me the strength, wisdom and words of what to say to them! I don't want to make it a big deal because I don't want them thinking I am dying like tomorrow or something. So they come into the kitchen with us and I say, "I am not going to be on chemo for a while! My dr wants me to try another hospital to see if they have anything that could help with my cancer, the chemo I am on here isn't working anymore." All of the sudden, there is a light in both of their eyes and they are jumping up and down screaming, "Yay!" "GREAT NEWS MOM!" "I just KNOW there is something out there for you!" I just hugged them and allowed them to have their celebratory moment! When they left, I felt HORRIBLE!!! Did I say the wrong thing? Did I make matters worse? Oh LORD WHERE ARE YOU THESE DAYS?!!
So today I wake up and try to get out of my funk! What's done is done and hopefully the boys can bounce back. I decide to take a long bubble bath to think and pray. I will tell you, I have never heard so clear a message from God. All of the sudden, the verse Philippians 4:4 pops right into my head, "Rejoice in the Lord ALWAYS; again I say REJOICE" Also the verse Jame 1:2 "Consider it great JOY, my brothers and sisters, whenever you face trials of any kind" So there I was in the bath thinking of what a horrible mom I was to give my children false hope (in my human eyes) and that if I do pass, they will take the blow even harder! But then God slapped me in the face with these verses and I realize, I AM THE WRONG ONE! So the whole day today, I have been singing the little song we learned at church when I was very small, "Rejoice in the Lord always and again I say rejoice!" Here my sons did what I was supposed to do and I learned an amazing lesson from them! Even tho to my human eyes a situation looks bleak, PRAISE HIM, REJOICE IN HIM!! It automatically felt like a huge weight was off my shoulders! I just kept that song tucked in my heart all day and when I would start to panic, I would sing it out loud!!
The Lord has done so many miracles in my life, too many to list! I need to remember HE wants the best for me and my family! He knows a heck of a lot more that I know and he will continue to preform miracles even with todays little revelation! So with that... REJOICE WITH ME!! As always, KEEP PRAYING, HE IS LISTENING!!
Our holidays were amazing! We made it back to our beautiful, warm, cozy cabin for Christmas! It was just our family (My parents, my family, my sister and her family and my brother and his kids) there for 5 days and then my cousin Jason and his girlfriend, came up there to spend Christmas day with us! We had another treat when our AWESOME, neighbors Ana and Todd, came up to play the day after Christmas! It was a great time of games, arts and crafts, baking and cooking, fires roaring in the fireplace, a visit from Good St Nick and us all sleeping under one roof again! It was a great holiday season just being in the midst of God's glory! Nature has a way of just proving there is a God! Its such a beautiful place!
Our New Year was pretty low key! We stayed home and the neighbors came over and we played games all night, laughed and had a great time! At the strike of midnight, I got a hurried kiss from the hubby and out everyone flew for fireworks we saved from the 4th of July (shhhh!) and sparklers! It was actually one of my favorite New Years Eve.
The battle with cancer is blazing on! I have been on chemo without missing a day since June of 2014! It is so such a part of our daily lives, that we plan things saying, "That date won't work, Christi will still be feeling the effects of chemo!" Or "We need to plan the party on this date because that is 3 days before I have to do chemo, so I will be feeling my best" Take "my best" lightly! A lot goes along with that, fatigue, sleeplessness, pains and so on! But, we got the birthdays and holidays all fit into my schedule, with very few changes! I did not miss any chemo, but I did move it around a bit to make that week work for me! So everything was going well, but I started feeling a little more, sluggish, rundown, down right tired to the point I would be in conversation with someone and I would fall asleep! I apologize to all of you who was rudely fallen asleep on! I PROMISE IT WAS ME, NOT YOU! I just chalked it up to being so busy during the holidays! All moms get this way!
When I first got diagnosed, in June of 2011, I had a 9 year old, a 7 year old and a 18 month old. I prayed and prayed, crying out to Jesus to give me more time! I just wanted to make it to see Joey hit the double digits, for Jon and I to be able to celebrate our 20 year anniversary, to see my boy Jonny start to turn into a young man of 13 years and lastly to see my sweet Caylee turn 5. The reason behind this was because one of my first memories was my 5th, Strawberry Shortcake birthday! Which would hopefully mean that Caylee would retain some kind of memory of me! We had the birthday party and it was a blow out! I saved every penny I earned from selling Posh to give her the party of her dreams! It was, of course, the Disney movie Frozen theme! It was beyond amazing! Time was ticking away and the days turned to months and by the time I turned around, Dr P was scheduling me for my next CT Scan! As soon as I set the appointment, I just got this knot in my stomach that this would be the CT that was going to change things in my normally rigid schedule.
Even the day of the scan, I was unusually nervous. I couldn't shake it! As Jon and I walked down the hall to get to the CT room, I turned to him and said, "I have a feeling this scan is going to change and disturb our very abnormal, normal life we had become accustomed to! We had our routine down! I had been ok with this whole cancer thing for quite some time! But I had a feeling that this very short test was going to change all that! Sure enough, it happened... We went in on Monday, January the 26th, for our normal dr appt that we have every time I have chemo! So we go in, my nurse Christie, takes all the vitals, I mention to her about feeling fatigued and rundown. I was also running a slight fever of 99.3, For me, this is high, I usually run around 97, She also marks this on my chart. She leaves and tells us the dr will be in a minute. I take this time to express to Jon that I really think this scan is going to be the life changer! Before we even had a chance to pray, in walks Dr P. He shakes Jon's hand, then mine. He sits down and says, "We have spoke before about you stopping chemo and going to clinical trials when the cancer shows it is resisting the chemo cocktail you are on. I am sorry to say, it is. We knew this day was coming and I have talked to you about this for a while. I also told you that you had to be in a healthy state in order to qualify for clinical trials" All I could do is shake my head. Then he says, "Your scan showed a tiny bit of growth" at that time I exhaled, I had no idea I was even holding my breath! Then he went on, "The problem is, even though you don't have any new cancer, you have the slightest bit of growth, EVERY SINGLE TUMOR GREW!" That was the first time that ever happened! Yes, it had grown and shrank before, but only a few tumors did. This was every single one! At that the room start closing in on me, I think I was on the verge of passing out! So, I said, "what exactly are you trying to say?" He looked at me and said, "When you have growth in all your tumors, that is the sign that your body is rejecting chemo and its just not working! So we are canceling your chemo now and sending you off for clinical trials. USC, UCLA and UCI all have colon cancer research going on there, all you need to do is to choose one." I was in total shock! Even tho I feel God was trying to prepare me for this news, it didn't soften the blow as much as I wish it would have! He then says, "You can not go to a trial where they are first testing out drug, where half of the patients get placebos and the other get the actual drug. You need to go to one that has been going on for years and is almost ready for the FDA to approve it!" I said, "Ok, so which one has the best option for me and we will go with that one!" He says, "Well I normally just send you to USC out of habit because I know the people there, but its really your choice," I asked, "You didn't give them a call to see which one would be the best fit for me?" He just kind of ignored that question and said, "Its really a matter of convenience, go where it would be easiest for you to get there!" I threw up my hands, I could not believe he couldn't just take a few mins out of his day to call around to see which trial would be the best fit for me, and said (in a snarky way), "So pretty much this is a crap shoot! So in that case Jon, just pick on that will be easiest for you to get me there and back!" So he said, sheepishly, "I don't know?? UCI?" With that, he wrote in my chart UCI and he said "they will be calling you soon to make the appointment, so why don't you guys come back here in 3 weeks and we will meet up here and go over everything. They will send me your reports and things like that!" With that we left! So now here I am waiting for a phone call I do not want to answer because I never wanted to do clinical trials, but I will because that is what everyone wants for me... KEEP FIGHTING!! I am, I am also a lot more scared to die than I was when I first got diagnosed. We have made chemo such a part of our lives, that now I think, "HEY! I can do this for the rest of my life! Yes, it does suck, but for the most part we are leading very active, normal as can be, life!" Now its like ripping the bandaid off and exposing the wound all over again!
So we go home and we are down in the dumps. Shed a few tears and together, we felt this was the first day to the end of our lives together. We are pretty shaken, but know we have to tell the boys somehow, we would hate for them to overhear something that they didn't know about and feel like we have betrayed them on top of all this mess.
I call the boys to come and talk to me. I start praying for God to give me the strength, wisdom and words of what to say to them! I don't want to make it a big deal because I don't want them thinking I am dying like tomorrow or something. So they come into the kitchen with us and I say, "I am not going to be on chemo for a while! My dr wants me to try another hospital to see if they have anything that could help with my cancer, the chemo I am on here isn't working anymore." All of the sudden, there is a light in both of their eyes and they are jumping up and down screaming, "Yay!" "GREAT NEWS MOM!" "I just KNOW there is something out there for you!" I just hugged them and allowed them to have their celebratory moment! When they left, I felt HORRIBLE!!! Did I say the wrong thing? Did I make matters worse? Oh LORD WHERE ARE YOU THESE DAYS?!!
So today I wake up and try to get out of my funk! What's done is done and hopefully the boys can bounce back. I decide to take a long bubble bath to think and pray. I will tell you, I have never heard so clear a message from God. All of the sudden, the verse Philippians 4:4 pops right into my head, "Rejoice in the Lord ALWAYS; again I say REJOICE" Also the verse Jame 1:2 "Consider it great JOY, my brothers and sisters, whenever you face trials of any kind" So there I was in the bath thinking of what a horrible mom I was to give my children false hope (in my human eyes) and that if I do pass, they will take the blow even harder! But then God slapped me in the face with these verses and I realize, I AM THE WRONG ONE! So the whole day today, I have been singing the little song we learned at church when I was very small, "Rejoice in the Lord always and again I say rejoice!" Here my sons did what I was supposed to do and I learned an amazing lesson from them! Even tho to my human eyes a situation looks bleak, PRAISE HIM, REJOICE IN HIM!! It automatically felt like a huge weight was off my shoulders! I just kept that song tucked in my heart all day and when I would start to panic, I would sing it out loud!!
The Lord has done so many miracles in my life, too many to list! I need to remember HE wants the best for me and my family! He knows a heck of a lot more that I know and he will continue to preform miracles even with todays little revelation! So with that... REJOICE WITH ME!! As always, KEEP PRAYING, HE IS LISTENING!!
Monday, October 20, 2014
New CT results
Thank you to everyone who is praying for me! I have said it before and I will say it again, HE IS LISTENING! So, the last CT scan said that there was a little bit of growth and my dr wanted me to wait 6 weeks and have another CT and we would decide from there what to do! I was SO SURE, this was the beginning of the end! I had myself prepared for the absolute worst! The cancer was growing and I would be taken off the chemo and I would start on a new medicine that was not a chemo, but would stop or slow the growth of the cancer! I was at peace, we went in to hear the results and the dr said, "Well, you just don't stop surprising me! The chemo seems to be working and we are going to continue with how we are going and do your next CT scan after the new year!" I was stunned!! I was so sure that it was growing that I actually didn't know how to feel! I know for some of you that sounds weird, but I really never in a million years thought this would be the result! He told me that not only did the chemo stop the growth, but my cancer numbers have dropped even more! My head was spinning! Then I remembered, that meant more chemo. I am so grateful for the time God is giving me, but it doesn't make me like chemo anymore than I ever have! I am so happy!! This means I get to enjoy my holidays!! I don't need to stress that I may not see Christmas this year! I know I can't be completely sure that something won't happen, but my chances of being here for our trip to the cabins for Christmas is pretty good! I can focus on the short future, instead of stressing about the here and now only! I will be able to enjoy watching Jonny turn 13 years old and Caylee turning 5 years old! This is a HUGE thing for me! When I first got diagnosed, I remember praying, "Lord, let me see Jonny turn 13 and Caylee turn 5, I remember my 5th birthday, she will remember me!" HE LISTENED TO ME!! This is such a miracle!
So, when I say, "Keep pray, He is listening!!" HE REALLY IS LISTENING!! Praise GOD for that!!
So, when I say, "Keep pray, He is listening!!" HE REALLY IS LISTENING!! Praise GOD for that!!
Tuesday, September 30, 2014
Where I am now...
I had better jump on here before things really start moving quickly, birthdays, holidays and yes... my cancer! I will just let you all in on where I am at now in my journey. I had a CT Scan a few weeks ago and even tho my cea (cancer) numbers were down 100 points, the ct proved my cancer was indeed still growing! In hopes that the cancer just hadn't caught up to the point drop, my dr decided to give it another try and wait another 6 weeks and do a new CT Scan. So I am in the wait period. I will go over what our next steps are, good and bad. So, if the scan shows that my cancer just hadn't caught up to the number drop and it is either stable or in fact shrinking, we will keep going the way we have been. Chemo every 3 weeks... 6 hours of infusion followed by 2 weeks of 4 pills 2 times a day and then a week off. Then we will rescan every 2 months to keep on top of it! If the cancer is still growing despite the number drop, I will be taken off chemo completely! From there, I will be put on a new medicine that is not technically a chemo. It comes in pill form and you take it for 3 weeks with a one week break! This medicine works about 50% of the time and what it does is it shuts the blood vessels off that feed the tumors. So it stops them from growing! Unlike chemo that is supposed to shrink and kill the chemo! So the chemo is not going away, this is just buying us a little more time! If that decides not to work, he will recommend that we try clinical trials! My first initial thought about clinical trials is to run as fast as I can away from that at all costs! The 3 other cancer patients who were in my condition, that went to clinical trials all passed away within 6 weeks. So my first thought was to battle the cancer myself because I have been told over and over I have a slow growing cancer. But now as I sit here, starring down the barrel of what could be, which path will I take, I realize you can't really "plan" your life. You just don't know how you are going to react to a situation until it is slapping you in the face!
This brings me to my next topic, WHAT SYMPTOMS OR HOW AM I DOING PHYSICALLY! I have noticed a lot of changes in me. I get sleepy SUPER quick!! I went to a birthday party for my 6 year old niece and I made it about 2 hours and I got this overwhelming need to sleep!! I went into the twins room and just wanted to lay there on the ground and sleep. So, Jon found me in there and rounded the kids up and we left the party! I also have been falling a lot lately! In one incidence I broke my foot! But I fell again about 2 weeks ago! That was fun because my kids all saw this happen. So as I am laying in the middle of the parking lot, my kids are yelling at me "Don't DIE MOMMY!!!!" I HONESTLY DON'T KNOW HOW I AM GOING TO GET UP!! I am trying to calm my kids down and finally we get up and in the car. We are about 10 minutes into the ride and Caylee (4yrs) says, "Mommy I am glad you didn't die because if you did we would have to get a new one!" Yes! Those are the exact words you as a mother want to hear from your only daughter! But, I know she is scared as the rest of us are! Can't really hold that against her!
So thats where we stand now! Keep praying as always HE IS LISTENING! Pray God's will in my life!
This brings me to my next topic, WHAT SYMPTOMS OR HOW AM I DOING PHYSICALLY! I have noticed a lot of changes in me. I get sleepy SUPER quick!! I went to a birthday party for my 6 year old niece and I made it about 2 hours and I got this overwhelming need to sleep!! I went into the twins room and just wanted to lay there on the ground and sleep. So, Jon found me in there and rounded the kids up and we left the party! I also have been falling a lot lately! In one incidence I broke my foot! But I fell again about 2 weeks ago! That was fun because my kids all saw this happen. So as I am laying in the middle of the parking lot, my kids are yelling at me "Don't DIE MOMMY!!!!" I HONESTLY DON'T KNOW HOW I AM GOING TO GET UP!! I am trying to calm my kids down and finally we get up and in the car. We are about 10 minutes into the ride and Caylee (4yrs) says, "Mommy I am glad you didn't die because if you did we would have to get a new one!" Yes! Those are the exact words you as a mother want to hear from your only daughter! But, I know she is scared as the rest of us are! Can't really hold that against her!
So thats where we stand now! Keep praying as always HE IS LISTENING! Pray God's will in my life!
Thursday, August 14, 2014
Catchin' up after Summer!
Sorry it has been so long since I have written! We have been more busy the passed 6 months than we have in the last 3 years combined!! I have been doing chemo every other week! On our weeks off, we try to go do something as a family! So, since December, we went to the Cabins as a family. Had our Christmas there and met Santa, got home and went back onto chemo! Then in February, we decided to get a second opinion at Cancer Treatment Centers of America and we were there, just Jon and I for a week! My parents brought the kids up for the weekend and we went to a ghost town and then went looking a model homes for fun and took the kids to the park and met up with a high school friend! At the last day of the CTCA, they let me know that there wasn't anything more we could do! My original doctor was doing exactly what they would have done from the get go! So we left there broken hearted! Then in March it was off to PARADISE HERE ON EARTH... HAWAII!! The Dream Foundation got us a 3 bedroom, 3 bath condo with full kitchen, a formal living room and a family room right on our own private lagoon! We were there for 5 days and then went back home. All the while, I was still doing my chemo, loosing my hair and being sick when no one is looking!
Then we took a few months off and found COOPERSTOWN CHIROPRACTIC! It was GOD thing!! I just went because we were looking for a doctor who will adjust me because while I was at the Cancer Treatment Center, they told me my back was pretty bad and we needed to get it fixed! So we went to meet the dr and he had told me that he prayed for me that morning! That he believes God has big things in store for me! Since going to dr Cooper, my back feels SO MUCH BETTER! I used to not be able to get out of bed without taking my pain pills and laying in bed for about 30 minutes until they kicked in! Now I can get out of bed and walk without the pain pills! Also, since being there my cancer numbers have dropped by 100 points! I was at 380 and now they are around 280!
At the end of May, the boys got out of school! So for a full month, they were the only kids in the family out of school until mid-end of June. So I had to entertain them with science projects, water play, parks, art, and things like that for a whole month! Whew! I was exhausted!!
On June 19th our family decided to take off and surprise my grandma Harris, and all 14 of us flew to Washington DC, we stayed there for 3 days and saw the monuments, white house, capitol, the Smithsonian's! Our last stop was the Arlington Cemetery! If I could suggest anywhere to go, it would be here! Seeing all the graves of all the soldiers that have laid down their lives for our freedom, was unreal! It was such a great time. Then we rented 3 mini vans and went to Pennsylvania, our first stop was HERSHEY It was more fun than I had remembered it was from my 8th grade trip! The kids were all in heaven!! The next day we went to Philadelphia!! We got dropped off at Independence Hall, saw the Liberty Bell, walked to Ben Franklins house, got authentic Philly Cheesesteaks, walked down to the Delaware River, then back to our hotel. The next morning I got a knock on the door and a friend that I had met on the internet about 10 years ago, surprised me and came to see me!! It was one of the highlights of my trip! Meeting Carol Ann was such a blessing! It was not weird at all and I wish we had longer to hang out together! Then we took off and headed to Gettysburg Pa!. Seriously one of the most beautiful and historical places I have been to! The boys loved it! How could they not when it was filled with guns, cannons, flags, soldiers uniforms, etc... The girls I have to admit were a tiny bored! Then we took off to Virginia and just took a day off to rest! Much needed sleep! In the morning we were off to NORTH CAROLINA to see my family that I haven't seen in forever!! The whole Harris side lives there! We all met at a restaurant, my grandma had no idea we were even coming!! What a great surprise! The whole family came in for the weekend and we stayed for very short time! Then we had the lonely, sad, flight home!! 10 fun filled, packed days of family and it was WONDERFUL!!! Not even the kids fought like they normally do!
Then in July we went on our yearly river trip!! IT WAS AMAZING!! The weather was about 115, but the water was perfect!
In between all the trips, I am still doing chemo and trying to keep the kids busy through the rest of the Summer.
Last trip of the Summer was in August, it was a WONDERFUL Posh convention in Las Vegas. Since Jon and I still celebrate the anniversary of our first date, we decided this would be our trip! We stayed at the Encore and Betsy and Darren were at the connecting hotel the Wynn, so while the girls were in the convention scoring a ton of new product... Darren and Jon were at the pool, gambling and hanging out in Vegas! They would come pick us up fro the convention and then Jon and I would go rest in our room together because it took a lot out of me! Our rooms were gorgeous suites! It was really one of the best weekends of our lives! We are so thankful to God for all the blessings of the trips that we got to do! He provided for us big time! There was no way we would have been able to do any of these trips without God providing us with all the blessings we needed to get there and spread his word~ and I did!!
Which brings us to now... I had a ct scan done yesterday and the dr told me he was not worried because with my numbers falling as they were, I just had a really bad feeling! The next day was chemo and the dr told us the results! He said he was extremely surprised with what he saw! My cancer is actually growning!!! WHAT? HOW? UGH!! So he said, he will give me one last chance for a miracle! He put me on the highest dose of the chemo for the next 3 sessions. After 9 weeks, we are going to do another CT Scan! If it still shows that the chemo is growing. We are going to have to change our course of action. I am thinking he means clinical trials! I don't even know if I want to be a lab rat in front of my kids! So please pray for a BIG MIRACLE to happen in the next 9 weeks
So, the kids started school and I will have more time to jump on here and update the blog
also my friend is setting up meals for our family! Even if you are not in the same state, you can have the company deliver a meal in you! Please email me if you are not on my facebook and are interested in being part of the meals on wheels! My email is ciadamik@aol.com
thank you so much everyonw!!
Then we took a few months off and found COOPERSTOWN CHIROPRACTIC! It was GOD thing!! I just went because we were looking for a doctor who will adjust me because while I was at the Cancer Treatment Center, they told me my back was pretty bad and we needed to get it fixed! So we went to meet the dr and he had told me that he prayed for me that morning! That he believes God has big things in store for me! Since going to dr Cooper, my back feels SO MUCH BETTER! I used to not be able to get out of bed without taking my pain pills and laying in bed for about 30 minutes until they kicked in! Now I can get out of bed and walk without the pain pills! Also, since being there my cancer numbers have dropped by 100 points! I was at 380 and now they are around 280!
At the end of May, the boys got out of school! So for a full month, they were the only kids in the family out of school until mid-end of June. So I had to entertain them with science projects, water play, parks, art, and things like that for a whole month! Whew! I was exhausted!!
On June 19th our family decided to take off and surprise my grandma Harris, and all 14 of us flew to Washington DC, we stayed there for 3 days and saw the monuments, white house, capitol, the Smithsonian's! Our last stop was the Arlington Cemetery! If I could suggest anywhere to go, it would be here! Seeing all the graves of all the soldiers that have laid down their lives for our freedom, was unreal! It was such a great time. Then we rented 3 mini vans and went to Pennsylvania, our first stop was HERSHEY It was more fun than I had remembered it was from my 8th grade trip! The kids were all in heaven!! The next day we went to Philadelphia!! We got dropped off at Independence Hall, saw the Liberty Bell, walked to Ben Franklins house, got authentic Philly Cheesesteaks, walked down to the Delaware River, then back to our hotel. The next morning I got a knock on the door and a friend that I had met on the internet about 10 years ago, surprised me and came to see me!! It was one of the highlights of my trip! Meeting Carol Ann was such a blessing! It was not weird at all and I wish we had longer to hang out together! Then we took off and headed to Gettysburg Pa!. Seriously one of the most beautiful and historical places I have been to! The boys loved it! How could they not when it was filled with guns, cannons, flags, soldiers uniforms, etc... The girls I have to admit were a tiny bored! Then we took off to Virginia and just took a day off to rest! Much needed sleep! In the morning we were off to NORTH CAROLINA to see my family that I haven't seen in forever!! The whole Harris side lives there! We all met at a restaurant, my grandma had no idea we were even coming!! What a great surprise! The whole family came in for the weekend and we stayed for very short time! Then we had the lonely, sad, flight home!! 10 fun filled, packed days of family and it was WONDERFUL!!! Not even the kids fought like they normally do!
Then in July we went on our yearly river trip!! IT WAS AMAZING!! The weather was about 115, but the water was perfect!
In between all the trips, I am still doing chemo and trying to keep the kids busy through the rest of the Summer.
Last trip of the Summer was in August, it was a WONDERFUL Posh convention in Las Vegas. Since Jon and I still celebrate the anniversary of our first date, we decided this would be our trip! We stayed at the Encore and Betsy and Darren were at the connecting hotel the Wynn, so while the girls were in the convention scoring a ton of new product... Darren and Jon were at the pool, gambling and hanging out in Vegas! They would come pick us up fro the convention and then Jon and I would go rest in our room together because it took a lot out of me! Our rooms were gorgeous suites! It was really one of the best weekends of our lives! We are so thankful to God for all the blessings of the trips that we got to do! He provided for us big time! There was no way we would have been able to do any of these trips without God providing us with all the blessings we needed to get there and spread his word~ and I did!!
Which brings us to now... I had a ct scan done yesterday and the dr told me he was not worried because with my numbers falling as they were, I just had a really bad feeling! The next day was chemo and the dr told us the results! He said he was extremely surprised with what he saw! My cancer is actually growning!!! WHAT? HOW? UGH!! So he said, he will give me one last chance for a miracle! He put me on the highest dose of the chemo for the next 3 sessions. After 9 weeks, we are going to do another CT Scan! If it still shows that the chemo is growing. We are going to have to change our course of action. I am thinking he means clinical trials! I don't even know if I want to be a lab rat in front of my kids! So please pray for a BIG MIRACLE to happen in the next 9 weeks
So, the kids started school and I will have more time to jump on here and update the blog
also my friend is setting up meals for our family! Even if you are not in the same state, you can have the company deliver a meal in you! Please email me if you are not on my facebook and are interested in being part of the meals on wheels! My email is ciadamik@aol.com
thank you so much everyonw!!
Wednesday, March 19, 2014
Bald is Beautiful... Right?
We are told in chemo class (a 2 hour class that you take right before you start chemo, I highly recommend taking someone with you who can pay attention!) that you will typically lose your hair around the 21st day after your first dose of chemo. For some reason it took my a good 2 years before my weirdo body decided to lose it. At that time, the first time I lost my hair, I was MORE than ready to shave it. It had been slowly falling out and I waited until the kids were ready and my hair was shoulder length at that time, so the bald spots were covered.
This time, however, was a whole different story! It was day 19 from my first day of being on CPT-11, as I like to call it, the devil. I was a few days away from my second round of chemo, so I decided a long hot bath with a bath bomb was well deserved. I started filling the bath and threw in my favorite bath bomb without even breaking it up, I deserved the WHOLE bomb. As it was filling up and the bomb was fizzing away into the water, turning it a beautiful lavender color, I noticed a couple of strands of hair fall into the sink. Hmm.. that's weird. Not thinking too much about it, I slipped into the warm, relaxing water. AHHH.... This is the life, so I thought. I started praying. I love to pray while in the shower or bath, its quiet, peaceful and the kids KNOW not to bug me unless they are dying! I mean, there had better be blood and a lot of it if they bother me while in the bath. That is my time and I share it with the Lord! I clearly remember being in the middle of singing Great is Thy Faithfulness, when I poured a Super Gulp sized cup of water over my head, when it happened. I stopped mid singing and saw hair EVERYWHERE. Literally a layer of hair floated on top of my beautiful, serene bath full of light purple water! I just sat there in the middle of it stunned... Something is wrong! This is not how it happens to me. First of all, it takes YEARS before my hair decides to fall out and it happens over time, not over night! After I realize what had just happened, I thought, "Well, this is the most that is coming out, surely I won't lose anymore than this!" So I dump the cup over my head again and even more hair fell into the water. I started panicking! I freaked! I started using the cup to get the disgusting, vile, devil hair out of my bath! I needed to get rid of the visual reminder of the battle my body and soul are going through. I fished as much as I could out of the tub and ran my fingers thru my hair and my hand was covered in wet, sticky hair. I jumped up and rinsed the dark brown strands of thick hair down the sink. That's when I lost it. I stood there screaming for my knight in shining armor. "JON!!!!!" I screamed, "I NEED JON!!!" HE WILL FIX IT!! I thought. "JON!!!!" I screeched again. He came running in, probably thinking I was dying! He had a look of sheer terror on his face, he looked around the room like he should be seeing a fire somewhere! I just stood there crying. Finally he said, "What??!! What is wrong? Are you hurt?! Did you get sick again?!" I just pointed to the bath water. He ran and looked (Probably expecting blood) and saw all the hair. He looked at me with sympathy and said, "Oh baby! I am so so sorry!" I really lost it then, like him seeing it too was really proof I was losing my hair. He helped me out and wrapped my towel around me. I grabbed my brush from under the sink and started brushing my thinning hair like a maniac. More and more hair was coming out. It was never ending. He finally took the brush from me and told me to stop, I was only making it worse. I told him I was just getting rid of the loose hairs and he seemed to get a little irritated with me and said, "JUST STOP!! Let's go to bed!" That night I insisted on finding my old head covers and scarves. It has been a year and I have no idea where we put them! I finally found them at the top of my closest and felt OK enough to go to sleep.
The next couple of days were the same. Hair on my pillow, clumps on the floor, on the bathroom floor. HAIR SEEMED TO BE ALL OVER THE PLACE. I had another round of chemo. I told the nurse my hair was thinning. She told me not to do anything drastic because it might just be thinning and not completely falling out. The night after I had chemo, I would run my fingers through my hair and handfuls were coming out. It became an obsession. But I was too sick to do anything about it. The days I have chemo, I can hardly lift my head off the pillow. I lay in bed by myself all day, wishing for time to pass, or wishing for the good Lord to bring me home because I feel so bad. I honestly can not even cry on the days I have chemo because I hurt so much.
The next day, feeling a little bit better, I talk my dad and mom into taking me to the nearest wig shop. I walk in the door and know what I am looking for. I want a wig that looked like me. Pretty plain, shoulder length, no bangs. I found it. I took the wig and put it on and it was "the one"! I bought 2 wigs, rushed out of the wig shop because I was so sick, I thought I was going to throw up on the lady ringing up my purchases. I can not tell you how slow she was going! I felt like screaming at her, "If you don't hurry up, your store is going to be covered in vomit!!" But I just smiled politely as she slowly took my card and slide it through the cash register, promising me she would pray for me. We got home and I showed my family the wigs (after getting sick) They liked them, but Jon seemed, off. We went to bed and back to pulling clumps of hair off my head and then he lost it. He yelled at me to stop, "You are making it worse" he said. I told him, I was not pulling it out, it was falling out on its own. I would rather be in control of it and throw the hair away, then to wake up with it all over my pillow. He was angry. He told me that he wanted me to have hair in Hawaii. HAWAII... That is almost 2 weeks away. At the rate my hair was falling out, there was no way it was going to see Hawaii! So, I decided to really take a look at my hair. I had no idea what it was looking like, since it is impossible to see the top of your own head. From what I saw everyday, it was not that bad! From the front, it just looked a little thin, not bad. So, I took pictures with my phone and to my HORROR, this is what I saw.
After the shock and pure dismay, I honestly couldn't believe what I was seeing! This was of course, 1am because you know me, I am up all night! After the shock wore off, I jumped up and ran into the bathroom like a crazy woman. Grabbed Jon's beard trimmer out of the medicine cabinet. Pulled off the clip and started shaving my hair off over the sink! One minute later, Jon came rushing in begging me to stop. It was too late. I looked up at him, through teary eyes and said, "I can't do it anymore! It's controlling me! I look like a balding old man!" I honestly feel so much better about myself with out hair. Even when I had hair, but it was short, I still felt better in my wigs. Nothing like how good I felt with my natural long hair, but the wig was a close second. Jon took the clippers from me and finished. Then we wet my head, whoa, did that feel weird. Rubbed conditioner over it and used a razor on it. I felt like a weight was lifted off me, but I have to admit, I am not NEAR as OK or as ready as when I first shaved my head.
When we finally got back into my room, at 2am, I looked in the mirror and snapped this picture! It was done!
The next day, the kids got the shock of their lives. I prayed they would take it better this time because they had already went through it before. They all seemed to be good with it. I wore my wig and my head coverings. Caylee seemed a little worried. She asked if her hair would fall out. I told her no, that I was on a special medicine that makes my hair fall out. Then she said, "Mommy, I would never shave my head!" Like I was super crazy for doing it. I told her, "I know! I had to, mommy was looking pretty silly right?" She said, "Yeah! I guess!"
There is a game that Caylee and I always play (about 1-2 times a week) It started in a hotel one night, when we were super bored. I put a blue ribbon in my hair and pretend I am Snow White and she is my friend who warns me about the dangers lurking about in the woods... The scary trees, the witch, the apple... that sort of thing! So the other night I am sitting on my bed, sulking, when she runs in with the ribbon! "Mommy!!!! Will you be Snow White???!!" I looked at her a little surprised and said, "Do you want me to put on a wig?" She looked at me puzzled for a second and said, "No, just put your ribbon on and tie mine on!" I almost cried!! She didn't care that I was bald!! I am just mommy to her! So on went the bows on my very bald, egg shaped head, like a birthday present! She is one of my greatest gifts!!!
Here is my new wig!! Had to show it off too! LOL!
This time, however, was a whole different story! It was day 19 from my first day of being on CPT-11, as I like to call it, the devil. I was a few days away from my second round of chemo, so I decided a long hot bath with a bath bomb was well deserved. I started filling the bath and threw in my favorite bath bomb without even breaking it up, I deserved the WHOLE bomb. As it was filling up and the bomb was fizzing away into the water, turning it a beautiful lavender color, I noticed a couple of strands of hair fall into the sink. Hmm.. that's weird. Not thinking too much about it, I slipped into the warm, relaxing water. AHHH.... This is the life, so I thought. I started praying. I love to pray while in the shower or bath, its quiet, peaceful and the kids KNOW not to bug me unless they are dying! I mean, there had better be blood and a lot of it if they bother me while in the bath. That is my time and I share it with the Lord! I clearly remember being in the middle of singing Great is Thy Faithfulness, when I poured a Super Gulp sized cup of water over my head, when it happened. I stopped mid singing and saw hair EVERYWHERE. Literally a layer of hair floated on top of my beautiful, serene bath full of light purple water! I just sat there in the middle of it stunned... Something is wrong! This is not how it happens to me. First of all, it takes YEARS before my hair decides to fall out and it happens over time, not over night! After I realize what had just happened, I thought, "Well, this is the most that is coming out, surely I won't lose anymore than this!" So I dump the cup over my head again and even more hair fell into the water. I started panicking! I freaked! I started using the cup to get the disgusting, vile, devil hair out of my bath! I needed to get rid of the visual reminder of the battle my body and soul are going through. I fished as much as I could out of the tub and ran my fingers thru my hair and my hand was covered in wet, sticky hair. I jumped up and rinsed the dark brown strands of thick hair down the sink. That's when I lost it. I stood there screaming for my knight in shining armor. "JON!!!!!" I screamed, "I NEED JON!!!" HE WILL FIX IT!! I thought. "JON!!!!" I screeched again. He came running in, probably thinking I was dying! He had a look of sheer terror on his face, he looked around the room like he should be seeing a fire somewhere! I just stood there crying. Finally he said, "What??!! What is wrong? Are you hurt?! Did you get sick again?!" I just pointed to the bath water. He ran and looked (Probably expecting blood) and saw all the hair. He looked at me with sympathy and said, "Oh baby! I am so so sorry!" I really lost it then, like him seeing it too was really proof I was losing my hair. He helped me out and wrapped my towel around me. I grabbed my brush from under the sink and started brushing my thinning hair like a maniac. More and more hair was coming out. It was never ending. He finally took the brush from me and told me to stop, I was only making it worse. I told him I was just getting rid of the loose hairs and he seemed to get a little irritated with me and said, "JUST STOP!! Let's go to bed!" That night I insisted on finding my old head covers and scarves. It has been a year and I have no idea where we put them! I finally found them at the top of my closest and felt OK enough to go to sleep.
The next couple of days were the same. Hair on my pillow, clumps on the floor, on the bathroom floor. HAIR SEEMED TO BE ALL OVER THE PLACE. I had another round of chemo. I told the nurse my hair was thinning. She told me not to do anything drastic because it might just be thinning and not completely falling out. The night after I had chemo, I would run my fingers through my hair and handfuls were coming out. It became an obsession. But I was too sick to do anything about it. The days I have chemo, I can hardly lift my head off the pillow. I lay in bed by myself all day, wishing for time to pass, or wishing for the good Lord to bring me home because I feel so bad. I honestly can not even cry on the days I have chemo because I hurt so much.
The next day, feeling a little bit better, I talk my dad and mom into taking me to the nearest wig shop. I walk in the door and know what I am looking for. I want a wig that looked like me. Pretty plain, shoulder length, no bangs. I found it. I took the wig and put it on and it was "the one"! I bought 2 wigs, rushed out of the wig shop because I was so sick, I thought I was going to throw up on the lady ringing up my purchases. I can not tell you how slow she was going! I felt like screaming at her, "If you don't hurry up, your store is going to be covered in vomit!!" But I just smiled politely as she slowly took my card and slide it through the cash register, promising me she would pray for me. We got home and I showed my family the wigs (after getting sick) They liked them, but Jon seemed, off. We went to bed and back to pulling clumps of hair off my head and then he lost it. He yelled at me to stop, "You are making it worse" he said. I told him, I was not pulling it out, it was falling out on its own. I would rather be in control of it and throw the hair away, then to wake up with it all over my pillow. He was angry. He told me that he wanted me to have hair in Hawaii. HAWAII... That is almost 2 weeks away. At the rate my hair was falling out, there was no way it was going to see Hawaii! So, I decided to really take a look at my hair. I had no idea what it was looking like, since it is impossible to see the top of your own head. From what I saw everyday, it was not that bad! From the front, it just looked a little thin, not bad. So, I took pictures with my phone and to my HORROR, this is what I saw.
When we finally got back into my room, at 2am, I looked in the mirror and snapped this picture! It was done!
The next day, the kids got the shock of their lives. I prayed they would take it better this time because they had already went through it before. They all seemed to be good with it. I wore my wig and my head coverings. Caylee seemed a little worried. She asked if her hair would fall out. I told her no, that I was on a special medicine that makes my hair fall out. Then she said, "Mommy, I would never shave my head!" Like I was super crazy for doing it. I told her, "I know! I had to, mommy was looking pretty silly right?" She said, "Yeah! I guess!"
There is a game that Caylee and I always play (about 1-2 times a week) It started in a hotel one night, when we were super bored. I put a blue ribbon in my hair and pretend I am Snow White and she is my friend who warns me about the dangers lurking about in the woods... The scary trees, the witch, the apple... that sort of thing! So the other night I am sitting on my bed, sulking, when she runs in with the ribbon! "Mommy!!!! Will you be Snow White???!!" I looked at her a little surprised and said, "Do you want me to put on a wig?" She looked at me puzzled for a second and said, "No, just put your ribbon on and tie mine on!" I almost cried!! She didn't care that I was bald!! I am just mommy to her! So on went the bows on my very bald, egg shaped head, like a birthday present! She is one of my greatest gifts!!!
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