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

November 30, 2012 CTCA

Another trip to CTCA with amazing results! I was very nervous about coming to see my doctor because of the side effects I am having. For some reason I just didn't have the confidence that I usually have. My health was failing and the cancer was more painful. How can I feel like my fight was causing the cancer the decrease? While waiting for the doctor to come in, my heart became warm and comforted. I knew exactly Who it was. I've always believed that God is my healer and all I need is Him! The doctor proceeded to tell us that my cancer markers are down and all other blood tests look good! The side effects are from the Afinitor and they should subside. Once again my faith has been proven! The prayers that you are saying, the support that is strong, and my trust in God has once again made myself, family and friends very relieved. I thank God and you for all that you do! Rob, Patti, Shae, and Robbin came out with me so the celebration did go on tonight! Tomorrow we are going to Chicago to do a little shopping and mostly to eat the best pizza every, and see the Christmas lights. Chicago is so beautiful this time of year. I'll get pics on later. Sunday we plan on going to the Brat Stop for cheese and brats. Then back to watch the Broncos. Monday night we will be back home. We wish everyone a very Merry Christmas! There is so much to celebrate and we hope you are healthy and happy! God Bless, Gwyn

October 2012 At CTCA

Yep it's time for another trip to CTCA. This time we got here Sunday in the late morning so we had most of the day and night to do whatever we wanted. So we dropped off the luggage and off to the Chancery to eat. We were starving!!! After lunch we unpacked and yep we both took a nap and watched football. That's all the excitement we had. Outlet mall right across the street and I didn't go. Wow must be something wrong with me! Monday I had a PET Scan scheduled for 5pm. This is the scan that you can not eat 6 hours before and after the injection of radio active gadolinium you must stay still for one hour. The scan then begins and it takes 21 minutes. It's one of the easiest tests I have to do. Sleep through the whole thing. Well, ok kind of. HAHA We then went back to the hotel for a cheesehead dream hamburger!! Yum yum! My favorite hamburger!!! Then tuesday morning we went back to the hospital for my doctor appointment at noon. She told us that she was taking me off of the doxil because it was to hard on my body. After a dose of it I got a rash over my body, mouth and throat sores and body aches just to name a few things. These lasted for 3 weeks. I had one good week a month while taking the doxil. My doctor was not pleased with that and didn't want me living like that so I'm off of it and will now take Afinitor, Aromasin and Xgeva. These drugs are very costly and not entirely covered by my insurance. The Afinitor and Aromasin are a pill and the Xgeva is a shot. I will travel back to CTCA every 6 weeks for the shot and will take the pills daily. She did tell me that there is still increased activity on the bones that showed on the scan. My markers were all up also. This tells us that the doxil didn't work as well as she wanted it to. That's the main reason for stopping that drug. With the activity on the bone it's still important that I take some kind of chemotherapy. I have put a link for the Afinitor and Aromasin if anyone wants to look it up. There is side effects but nothing like any of the other drugs I have taken. Yeah!!! We return wednesday afternoon and I will come back the end of november for blood tests to see how this new drug is working. Thank you again for all the thoughts and prayers. God has been so good to me and with His help I am still fighting!! I thank Him for that and for all of You!!! God Bless!

September 2012 Trip to CTCA

Amazing how fast a month goes by!! Robbin and I went back to CTCA for my second round of chemo on September 7th. When we arrived at the hospital at 7:30am, I had my port accessed, gave blood, we went to breakfast and then the doctor appointment. I love my doctor. She spends at least 20 minutes with us explaining everything in detail!! You just can't find a better doctor than her!! The fist chemo that I got gave me several side affects.....swelling throat, hives, huge pimples, more neuropathy, headache that lasted 3 days,and bad body aches for most of the month. The doctor was very concerned about these and did say that these are not good for me but it is part of going through this chemo. She felt that if I could handle it she would like to see me have another month of the same chemo to see if my body will respond to it a little easier. It is up to me to make that decision and after much discussing with the doctor, Robbin and I thought it would be worth trying it for another month. The other option is to start on a pill that will work like a non hormone. I have been on a couple of these and they are much nicer to except but with my cancer markers going up I just felt like I wanted to get on top of the growth and after 6 treatments I can start on the pills. I need much prayer that my body will except this chemo so that I can continue it for 4 more treatments. I also am having the xgiva shot to help with the bone healing and pain. So I got a double dose of poison. We hope and pray that all of this will help stop the growth for another year and I can have some quality of life. It doesn't seem like much to give up 6 months for one year!!! Thanks for all the thoughts and prayers along this journey!! My daughters have been very helpful after I get home. This is a very difficult time for Robbin and the girls!! The support from you is so needed and appreciated!! While Gwyn goes through the struggle with Chemo, I sometimes feel very helpless and unsure of what I am supposed to do for her. As the side effects take a huge toll physically, they tear her down emotionally. I try to maintain a positive and supportive attitude, but it becomes a challenge. She and I BOTH need the help to cope with the stress involved with treating and living with this disease. Family and friends play a crucial role in the treatment of the mind and soul. Last year when she went through Chemo, we really didn't know what to expect. And since this one is a different type, we have to wait and see how she reacts as the medication accumulates. I would like to ask everyone to pick up the phone and check on her and talk to her about different things. Keep her mind occupied and she does much better!!! I have to say a huge thank you to our girls and Gwyn's sewing friends. Please continue to call and stop by (we need that). Thank You to all!!!

August Trip to CTCA

I must say.....I knew this trip was going to be a little different than in the past. A couple of events have occurred since July and this is where it all starts. My body has been feeling different than before which I've always been able to feel and definitely listen to. My doctor wanted a Pet scan done to see what if anything had changed as far as bone cancer growth and also to see if anything is abnormal in the liver, kidneys, heart, pancreas, adrenal glands lower abdomen and lungs. I did tell her something is different...I have more aches in my shoulders, not sleeping well, very fatigued, and just am not myself. I'm thinking because she is the best doctor EVER, she always listen to me, that she could tell something was wrong. So the Pet scan was done from the base of the skull to mid thigh. It showed there is multiple foci of increased metabolic activities involving the sternum, both ribs, thoracic spine, left scapula and both proximal humeri. The blood tests showed all cancer markers have increased. This is where my pain is coming from. With all that said the doctor request that I start on a chemotherapy again. I had 2 different affects from that request.....oh no, not another 6 months of feeling like someone ran over me and then my mind felt the reality and I knew this was going to help me with the quality and quantity of my life. My doctor is and always has been a step ahead of my feelings. It's so amazing how she does this....very compassionate lady!! She sends me to the infusion room for my first round of chemo. This drug is call doxorubicin liposomal Doxil. I added the link if your interested in looking into it more. 2 hours later I was done and headed to the airport to come back home. We walked in the house about 10:30 pm and I went straight to bed.