Tuesday, May 21, 2013

All HOTS are NOTS

Guess who came up with this title?? I had my first dose of my new IV chemo drug today. It is called Doxil for short. The real named is too long for me to remember. They first drew lots of tubes of blood, then gave me oral Benadryl, IV steroid and then the red colored drug. It looks like a strawberry daiquiri that I should drink rather than have it infused. The drug comes all pakaged up in a huge box of ice with just a small box inside that is the drug they mix up. I am feeling fine tonight after the treatment, but I must admit I am a bit shocked at the restrictions I now have to follow to avoid the bad side effects of this drug. PPE (Palmar-plantar erythrodysesthesia), commonly called hand-foot syndrome. It is skin reaction that sometimes occurs as a side effect of Doxil. It ususally appears on the palms of the hands and the soles of the feet, but may develop anywhere on the body where clothes are tight or where friction, rubbing or sweating occurs. This reaction may cause the skin in these areas to become red, swollen, itchy or painful.

Soooooooooo, I can't have anything hot, (like my morning coffee). I can't have a hot shower, boo hoo. No direct sunlight, so no floating on the pond for me this summer. I have to wear loose clothing, can't take things out of the oven. I can't do dishes with hot water. I can't chop hard foods such as raw vegetables, I can't lean on my elbows and on and on and on. I now get to enjoy frozen frappachinos and lots of iced drinks. They gave my these flat ice packs that my meds came in and twice a day for 15 minutes, I have to ice the palms of my hands and soles of my feet. I did that a minute ago watching the Tiger Game.

I was a bit shocked when they handed me my schedule and it goes up to next February!! IV chemo once a month and then a sub Q shot every week for three weeks and one week off. Lots of Chest x-rays and CT-scans to see if the drugs are working.

So if you see my with my new large sun hat that I got for Mother's Day, you will know why. I had a wonderful field trip last week with my two friends, Jackie and Deb and my sister-in-law Nancy. We did so much in two days!!! Saw the Tigers win last Tues. night, we were so shocked when the bat boy came over to us from the field and threw all four of us a pink Tiger baseball. The fans around us were going nuts. I figured after about the second ball that it was a set up. My wonderful brother Jim had bought them and had him throw them out to us. Thanks again Jim for a great night!! We went to Greek Town for fresh Baklava, rode the People mover, had a tour of the Pewabic Pottery Studio, Hitsville (the beginning of Motown, saw the Heidelburg project ( an neighborhood where they make art out of junk), had dessert and coffee at The Wittney House (and amazing old manion) had a wonderful lunch at Colors, a restruant that teaches locals a trade to serve and cook, using local produce. Dinner was happy hour at the Westin, which was the old Book-Cadillac Hotel, and many more sights......Detroit has lots to offer for those who haven't been there for a while, you should give it a try. We only ran into very friendly locals. Nancy has a new name by the way, "Baby Girl".

I don't always have a lot of energy and I was sure tired after our busy two days. My body didn't know what hit it. We are looking forward to up north this weekend. Stan's parents and his aunt Merle will be coming, along with Ross and Rumy. Mieke and Aaron get my new grandpuppy this weekend, so they will be a little busy with their new addition. I wish you all a wonderful Memorial Day.

 I thank you all for the love and prayers that continue for us. I am trying to enjoy everyday to the fullest and like my friend Dave, eating my dessert first if I want. I am so thankful that Dave B. is doing better with the PICC line and IV fluids. We love you Dave and pray for you constantly. Prayers also for Dave's son-in-law and my friend Kent who also has a reoccurence of his cancer and back on chemo. Kent, I miss our talks when we were in having our surgeries at the same time.  Hang in there buddy!!! Prayers also for my friend and PEO sister's husband David V. who is also battling cancer. Hope you are feeling better. There are way too many people in this cancer club as I know all of you who read this know all too well.

Watching the news about the tornado in Oklahoma, can't imagine how those people feel. My heart and prayers goes out to them as well.

Monday, May 13, 2013

50/50 Chance

I had my appt with Dr. Downey today. He was very backed up which is unusual for that office. So for a 1pm appt. we didn't get out of there until after 4:30. We discussed what the plan would be going forward because of the new spots they see on the CT-scan and the elevated CA-125. I finished my last round of chemo last Oct. They don't want to use the two drugs I had before because it is too soon. When the cancer reoccures this soon, they try a different drug, not to say they might not try it again in the future. They want me to be in a clinical trial research project. I will start this next Tues. It involves getting IV chemo once a month and then sub-q injections every week. The IV chemo drug is called Doxorubicin. The study is to see if this sub-q (VTX) drug given with the chemo drug helps your cancer tumors shrink or stop growing. The VTX is a new type of drug that stimulates your immune system. This study is a Randomized, double -blind, placebo-controlled phase study, which means, a computer picks whether you get the real drug or a placebo (water).

There are lots of tests I need to have done before they can give the first dose. I will be having an EKG, MUGA (heart test) and lots of blood work on Thurs. am. I told them I couldn't have it done in the next couple of days because I have a road trip planned with a few friends. We are going to Detroit, going to the Tiger game tomorrow night, IKEA, the Pewabic Pottery studio, maybe the Detroit Institute of Arts, and lots of other places we want to see. We are staying at my brother and sister-in-law's house in Plymouth. Nancy is going to be our driver and tour guide, she is so familiar with downtown.

So, I thank all of you who have continued to send cards, words of encouragement and tell me they keep me in their prayers daily. I do so appreciated all the support. I ask you to pray that I get the real drug and not the placebo in the study.

We had a lovely day yesterday for Mother's Day. We went over to Mieke's house for dinner after church, Stan's parents and Alden and Mary were there. Ross and Rumy couldn't be there because Ross had to play for a graduation commencement. Some of you may have seen my new summer hat that Mieke posted on Facebook. It is so cute, big brim to keep the sun off my head. I also got a real neat Greek Basil plant from Alden and Mary, it is like a little tree about 2 1/2 ft tall, Mieke already gave it a good hair cut. Can't wait to make some Pesto.

 The good thing about this round of chemo is that I shouldn't loose my hair.

My sister Krista is having surgery tomorrow am so please keep her in your prayers. I don't think she will mind that I mention she is having a hysterectomy. She is hoping that this might also help decrease the sciatic discomfort she has been having. She is having the robot assisted laporoscopic surgery and will be in the hospital over night. I wish her the very best and a great uneventful recovery.

I hope this makes sense to you all. I will report next time what some of the side effects might be.......

Tuesday, May 7, 2013

Feeling Good

Stan kind of wanted to close out his blog so he posted the update on his. You can find it on the right under Stan's blog. He did about 35 postings but I made him let me see them before he posted them.  You never know what he is going to come up with. He helps me write some of mine and I look those over pretty good before we put them out there.  I am doing pretty good though.  It looks like he is planning of having me around for a while.  That is a good thing!!!!