August 2013 At CTCA

First I need to let you know I just haven't felt well enough to keep up with my blog. I really need you to understand what has gone on in the last few months so you can continue to support my fight! You are a main reason why I'm in this fight! I thank you from the bottom of my heart!! God Bless You All! The last time I blogged I was still taking Afinitor chemo and that is what has made me so sick. When I visited my doctor in July I told her I had enough of this drug. My quality of life just wasn't there and my poor body couldn't take anymore abuse. We talked about what to do next. There are still several options which I am grateful for. One thing I have discovered through all this is that if I take a chemo pill every night instead of an infusion in my port I have more side affects. So I've told her that I would rather stay with the infusions. This also means more travel. I really don't mind that at all. So after much discussion the doctor chose Ixempra for my chemo treatment this time. I put a link to the side if you want to explore. My first infusion was Wednesday July 10th. I first had a pt scan to have something to compare to in 3 months. This showed several areas in the bone that had grown which tells the doctor that the Afinitor didn't do as well as she wanted. Dang and all the sick days I spent praying that it would work! Not that I prayed for nothing but that I spent 6 months taking this with severe side effects without good results! After the 6 hour infusion we finally got back to the hotel only to pack and get ready to come home the next morning. Robbin had gone with me this time and I'm glad he did. I had to be carried to the room because the drugs they give me before chemo just knock me out for about 4 hours. When we arrived home the next day all I wanted to do was sleep. I'm getting really good at listening to my body and doing what I need to get through the day. I've even learned to tell people no. Don't like that but I do it. Friday I started feeling so weak and had so much pain. I ended up going to the ER for some fluid, knew I was dehydrated, which made me feel a little better. But by Sunday Robbin was calling the ambulance because the pain was more than I could bare. I received pain meds that put me into a state of mind I've never been before. Didn't like it!!! I saw flying toothpicks, dolls dancing on the wall, even saw a concert behind my bed. Don't know who the band was. Must have been good....Lynn and Debbie were there! I can laugh about it know but at the time it was very scary. I guess I was even telling my family stories so if you want a good laugh just ask them. I have and its hilarious. Robbin was able to bring my dog Molly to the hospital Thursday-Sunday. She was great company and also healing for me! Monday morning the doctors at the hospital discovery I had a very low white blood count and a very high fever. The white cells were 0.30, normal for me is around 11.0 and the fever was 100.8. I was put in isolation for 3 days. One thing that this new chemo drug does is drop my white cells dramatically and fast. The doctors at the hospital don't know that so they treated me for high fever thinking I had an infection somewhere. After ever infusion of Ixempra 24 hours later I get a shot of Neupragen. This helps to build the white cells up. For the next few days I received so many drugs just to make me comfortable that by day 8 I had to go through withdrawals just to get back to me being in control not the drugs. This is the worst thing I have ever gone trough! Robbin was in constant contact with my doctors at CTCA. Not much more for anyone to do then to just get me through another day. By Monday I was able to go home and start recovering only to return for another treatment July 31st. This appointment was a very uplifting appointment. All I had gone through had been for the good!! My cancer markers had dropped!! There are three that we watch....7/10/13 CEA 13.4 to 6.9 CA-15.3 781 to 305 CA-27.29 678.4 to 237.3. I couldn't believe my eyes!!! Dropped more than half in one month!! And of course my doctor was so happy. We did the happy dance!! Rob and Patti had gone with me so we had a celebration moment too!! I received my second dose of ix.......that afternoon. And oh yes we were able to somehow squeeze in a couple hours of shopping before the treatment. If you need to know how to arrange the time to shop just call me. I'm becoming an expert! Just have to have some fun while we're there! After returning home I knew I would have to take it easy for at least 7 days. The pain from this treatment is very uncomfortable so it's very important that I stay on top of my pain. With that and rest I'm now starting to gain strength to return for a third treatment. The doctor says I will have 6 treatments with another pt scan after 3 months. When I started this treatment I wasn't given the full dose. My doctor knows me too well to do that to me. The second dose was less than the first. If I respond like she wants I will stay on the current dose. My birthday was July 25th so my family brought dinner over and we celebrated. After gifts Patti wanted to clip my hair. Yep, I'm bald again! I really don't care because this is one thing that will grow back and I do have 2 wigs that are lots of fun to wear. I also love wearing hats! With my life at the stage it's at I can only continue to tell you that your support means everything to me. It gives me encouragement, strength, and a sense of accomplishment. Thank you to all that have helped me in so many ways. I can't do this without YOU! Love to all!

CTCA in June 2013

Fast trip this time. Robbin and I left Sunday morning and got back Monday night. Seems we weren't even gone. When we got to the hotel the first thing we had to do was go eat cheese curds and a cheesehead dream hamburger. Yummy! We then walked over to the outlet mall. Didn't do much shopping. We just wanted to get some exercise. After going to bed early we arrived at CTCA at 6:20am. I had a blood draw, we ate breakfast then met with Dr. Neelam and the rest of the team. The blood tests showed mild increase in the cancer growth. The chemo Afinitor is working and the doctor was happy with that. She still wants me to be on the highest dose so I am slowly introducing that in. I take 7.5mg and every 3 days take a 10mg. After two weeks of this I will be on 10mg every night. I took 10mg Monday night and didn't have much of a side effect. The main effects are fatigue and pain. My doctor says it will even out after my body gets use to it. Since my appt in May I have had a very difficult time getting through a larger dose of chemo. My biggest complaint is fatigue. The pain is controllable. I just get so tired of seating around all the time. My concentration levels are effected so there isn't much I can do. I'm not one that likes to sit around. It depresses me so I work hard at changing my attitude to more positive thoughts. I'm losing weight and my doctor doesn't like that so I've added a protein drink and changed to a high protein diet. I really do feel better. Another side effect is restless leg. If you have ever experienced this you know how difficult it is to get through it. Most annoying thing ever!! My homeopathic doctor has increased the magnesium dose and this is helping so much. I am to call the care manager in a week and report the progress of the chemo pill. If all goes well I don't have to go back until August 1st. I am feeling very blessed once again that God is in control of all this! He has given me the wisdom to do what is right for my body and is showing me there is still hope. Wendy and Patti and their families have been coming in to help with everyday things. This is a huge relieve for Robbin since he is having to do everything inside the house and outside. He loves keeping busy but will burn out soon if we don't have help. So I thank my girls and their families for all they do. And I thank Robbin for being the best caregiver! He's amazing me with everything he accomplishes and never gives up! God Bless all of you!

April 2013 at CTCA

It's been three months since I went to see my team of doctors. Those months went so fast! Some of my supporters Robbin, Wendy, and Patti went with me this time. Much needed time together to get caught up and have lots of laughs. This visit was a more detailed appt. It started out Sunday with a blood draw then at 6am Monday with a PT scan followed by a MRI of the brain. I was done by 8:45. I love those early appts. There's time for a fun filled day after. We went to a breakfast house for one of the biggest plates filled with eggs, hash browns, sausage, and gyros I have ever seen!! Not my plate but Robbins. He couldn't even eat it all! We went back to the hotel to change clothes then to the outlet mall. Oh boy, my favorite place! After shopping for about 5 hours we had lunch and a rest then back to shopping. Can you believe Robbin hung with us the whole time? He was very patient and surprised us all. No complaining and didn't even buy anything for himself. "I don't need anything" he says. Lol. The next day at 9am was the doctors appts. I was so anxious to hear all the results. Once again my doctor spent about 30 minutes with us and everyone got all their questions answered. The scan reports where good. They showed no new activity! Two areas where concentrated on and those showed significant growth. The blood tests did show a significant increase also. This was a concern for the doctor because they had gone up at least 100 points on the cancer markers. With this there is three options...higher dose of Afinitor, or two different kinds of chemo drug infused. I choose to increase the dose of Afinitor. You see this doctor has taught me to exhaust all drugs that I can. I'm now taking 5mg so she wants to increase it to 7.5 then go to 10 the highest dose. When I first started this drug I was taking 10 and my body could not tolerate it. I was so sick for about 3 months. I'm praying that by increasing the dose slowly I can do it. She wants to see me in 4-6 weeks so I will be returning June 3rd. By then I will know if I can stay on this drug or have to go to a chemo infusion. I also pray that I don't get sick with the dose increases. If I don't this will be a drug I can stay on for the rest of my life. My quality of life has decreased and I'm adjusting to that. I can't do as much as I use to, fatigue is my main complaint. But that is something that is ok with me because of the benefits. If I have to start on a chemo drug there will be lots of changes.....staying in Chicago for 6 weeks, home for 3 weeks then back for another 6weeks. Because of the team of doctors I have there I will do what it takes. They have saved my life and all my trust is in them and of course The Lord! After all the appts Tuesday you can guess what we did. Yep...shopping! This time Robbin stayed at the hotel and us girls finished up. We picked up Robbin and went to a movie that night, packed and came home early the next day. As you can imagine I was exhausted but would not give up a moment of the time spent with my family. The next day the xgeva shot hit me. I had muscle aches so bad that I stayed in bed all day. I'm hoping to get up and around today. Still achy but I'm thinking that getting around will help push the meds through my body. I want to tell Wendy and Patti thank you so much for going with us, taking care of me when I needed it and of course for all the laughs and fun. And thanks to Robbin for making this a safe trip, for being so patient with all his girls and making us laugh so hard! It was a great trip! Also thanks so much to Merikay for taking care of our dogs. The friend staying in the house fell on the deck and broke her hand. Ended up having surgery the next day! Poor thing!! I also want to thank all of you reading this blog for the support you give me! I will never forget what you have done and I ask God to bless each of you! All my love, Gwyn You have to laugh through life!!!!

January 2013 Trip to CTCA

Burrrrrrr it's January in Chicago and it rained, snowed and the wind chill was below 0!! If you haven't experienced all of this believe me you don't want to!! Very cold and it sticks to your bones! It didn't keep us from going shopping tho! My friend Marti came with me this time for support and I so appreciate her taking her time to help me! God bless you girlfriend!!! We arrived on Tuesday 29th. Wednesday morning at 6:30 we were headed to the hospital for my PT scan. No eating and only unflavored water after midnight. I finished at 9:00am so the cafeteria was next on the schedule. After that I had a blood draw through my port. The results were posted the next day on my CTCA portal. I had a doctors appointment at 8:45 on Thursday. This trip was a calm trip as I knew that the chemo I was on was working to decrease the cancer on and in the bone. I just needed to hear that from my doctor. As I waited for her to come in the room, that calm was still with me. I've learned to listen to the spirit in me for it is my healer, God! Once again the doctor gave me the report I expected! All cancer is decreasing! The scan report states that all structures including the base of the skull, spine, ribs, sternum, bilateral shoulders, humerus, pelvis femurs have decreased in metabolic activity! The L5 vertebral body has decreased metabolic activity with maximum SUV of 7.9 versus 12.7 on the prior! All others have decreased in metabolic activity. A second lesion in the left humeral head which previously had maximum SUV of 8.3 today has a 3.1! There, that's start from the horses mouth for all you that know medical terms! For those that don't it says there is a great decrease of the cancer growth. All the other blood results where good also. So all in all this trip has been my favorite. 3 months ago when I started on this chemo I didn't think I would be able to stay on it. It was so hard on my stomach, severe cramping for 4 hours everyday for 2 months, mouth sores, fatigue, and no appetite. When I returned for a checkup in November I just wanted to quit taking the chemo. Oh I'm so glad I toughed it out. My doctor also said I don't have to come back for 3 months!!! That is such great news all the way! I want to thank all of you for keeping me in yours prayers! You're the best! God bless you all! There is no Dought in my mind of His Grace!! I am very Proud of You and how you never question your Faith!! Love You Babe!! Robbin