still here
Hello friends,
So much is happening in our lives now. Dialysis 3 times a week and I drive over there and go back to get him. It's very hard on your body and it seems as if he stays black and blue. My big strong husband is now practically able to do nothing. He comes home from dialysis and almost daily has to sleep a few hours.
But we are blessed that he finally is in a until that takes very good care of him. It's a battle to keep his blood work in line.
The bad news is that his cancer has spread to about most of his body. He has not had the horrible pain that I know will come.
Our doctor started him on a new trial. It is approved for melanoma but not for kidney cancer. It is an infusion rather than chemo. He had his first infusion Tues of this past week. It went fine and I was able to sit beside him. So far no side effects it is supposed to easier on the body that chemotherapy. We were told that it would take the place of chemo in years to come. The way I understand it the immune system is pumped up to attack the tumors. Lord I pray it works, he has been through several of the oral meds out now.
It is given by IV and the name of it is Optiva. It works in about 30 percent of patients. Please pray that he will be in that group. In August it will be 17 years since we started this journey. We still have good days that we go out to eat and just enjoy each other. We are thankful for EVERY day. We know we can't go to heaven together so one of us will see Jesus first! It gives me great comfort to know that he will be out of pain and he told me one day "be happy for me when that time comes, I will be out of all this".
God bless all of you.
Wanda in NC
Replies
Ah dearest Wanda, how glad I am to hear from you. You and Steve are completely incredible, and what hope you must give to other sufferers of this hideous disease.
I\'m so pleased that you say you still have those joyful times together. Going out to eat - well, you should do that as often as you can! So good when you don\'t have to cook :-) Ah, and your comment \"just enjoy each other\" - that makes it all worthwhile, I know. Just those moments of knowing that you are still together, and still the loving couple that you always were.
I\'m praying that the Optiva does what you want it to do (I\'m going to google it - so many new things coming out - who knows which may be the key). And I\'m praying that you will always have the strength and courage that you show every day, and that you will always be able to ask for help when you need it. Look after yourself my dear friend
Love and blessings
Meriel
Dearest Wanda, I have often thought of you and Steve and wondered how you are doing. I appreciate that you took time to journal in order to give us an update.
Your life has become so hard working through all the health challenges. However, I was glad to hear that he was still able to get a new treatment. Through the many years of battling this cancer, he has earned the right to be among the first to have positive results from this new treatment. There is hope and I will continue to pray that he will beat the odds.
I don\'t write much here at DS, but I will always check and respond to messages from my special friends here. You were here for me and I will always be here for you. Do try and take care of yourself Wanda...I know you are doing your best every minute of every day. Love and best wishes, Linda
Dearest Wanda,
Sending prayers that this new drug, Optiva, will have positive results for Steve. Please remember that you are always able to ask for help if you need it. You have always been here for others and they are all here for you.
Love you, my sweet lady.
Pam xxxx
Hello Wanda,
Thank you for taking the time to let us know what is happening ~ I know how difficult this time is for you, and Steve of course. My thoughts and prayers are there for you both. It is incredible to me that your journey/battle against kidney cancer has spanned 17 years! This must be going into the medical miracle record books. Your attitudes and philosophies as a couple are admirable and your mutual strength amazing. God has blessed you both.
love, gloria
Sweet Wanda,
I, too, thank you for taking the time to write this journal. All of us have been so concerned about you and Steve. Do appreciate your FB messages, when you are able to update.
The new drug sounds very promising. Your Steve is amazing, though sure he\'s very tired of fighting this awful battle. I saw that in my sweet Ray. They get sick and tired of being sick and tired. God bless them!
I worry about you, girlfriend. Are you taking any time for yourself? Please go get a massage, pedicure, or something to pamper YOU! We get so consumed with caretaking, that we forget about us. You do not need or want to get ill, Wanda. Please try to stay in touch from time to time. I pray for y\'all daily, and will continue that always.
I love you,
Ingrid
Wanda, thank you so much for writing to let us know how you and Steve are doing. I am told that going through the dialysis process is all-consuming and very tiring. I only had it for 7 weeks after my right nephrectomy and I can still remember the dread of that huge portable unit being wheeled into my room. I am realistic, however, that eventually I will be following Steve\'s schedule for the dialysis. My neighbor has to go through it also and I am always amazed at how bruised she is most of the time. We blame her daughter who is her caregiver and the daughter takes the teasing well. Like you and Steve, they persevere - one day at a time.
Ingrid had an excellent point about doing something for yourself. My Sister passed away on March 30th and her daughter, a registered nurse, was her primary caregiver.She could only take so much Family Leave and when that was over she went back to her 12 hour schedules and had a very nice person come in and care for her. My niece perhaps once a month would give the caregiver a couple of hours extra and would go to a movie. That was not enough time away from the situation. So I would recommend as well that you do something on a regular basis, even if it is once a week. I was able to travel from my home in GA to TN where they lived and shared the responsibility of caregiving with the woman and sent my niece to NM for a two week vacation to visit her Sister and nephews. They had moved there a few months prior. She was like a different person when she returned. They kept busy out there but it was a good type of \"tired\" when she came home.I know your situation is different and you are the primary caregiver as well as Steve sometimes felt well enough to go out and the two of you really enjoyed yourselves for a while. My sister was homebound entirely.
Please be sure to keep us abreast of how this Optiva is working for Steve. Maybe it will also help keep his blood work in line. I know mine is all over the place also. I can only take the Sutent for 1 week on and 1 week off once in a while. Again, depends upon the test results.
I pray that Optiva is the answer to your prayers. Steve WILL be within that 30%. And to have no side effects was wonderful. May that be the case each time he has it. How often does he receive it?
17 year journey together. How incredible. I know it is a long time to go through such a harrowing experience (only 9 for me) but we are fortunate that this did not happen before medicines were formulated to extend our time with our loved ones.
Wanda, I shall continue to keep you and Steve in my prayers. And please know that you are always in my thoughts.It was so good to hear from you.
Your Renal Cell Buddy, Andrea
Thank you for your comments and I will update soon. He has another infusion on May 5th. Love to each of you!
Wanda
Wanda, I have not been on here much. I often think of you and keep you both in prayers.