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!!
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