changes
It has been a while since my last journal. Almost four weeks. As I reported last time Steve was given 5 weeks off Sutent to see if the pain subsided while he was off the meds.
I am sad to say that the pain has continued, some times hurting very badly. We called his doctor and he ordered ms/cotton. Well the first one he took knocked him on his butt and he slept for hours. Sleep is good but he had such a hung over feeling that he said he would keep those for severe pain. He is routinely taking pain meds, at least one or two a day.
Can scar tissue hurt? He just had the scans and nothing was noted so why is he hurting? It is very unsettling to him and me. Both of his doctors told him that this would be an ongoing thing.
We went to Mrytle Beach last week. He did ok but the drive down there and back was hard on him. He sat with his seat reclined and it just breaks my heart to see him move so slowly. He did walk around at the car show for a couple of hours, but it tired him out. (heck it tired me out)
Do I see a difference in him? Is he getting worse? I am so nervous about that. I know that at some point he will get worse, we have talked about it. Will I be strong enough to care for him? Can I do what so many of you, my friends have done?
As you can see I am full of what if's. I will depend on my faith, my family and my friends to get through this. My God tells me he will never leave me nor forsake me. He is my refuge and my strength.
May God have mercy on Steve and me.
Love to you all,
Wanda
I am sad to say that the pain has continued, some times hurting very badly. We called his doctor and he ordered ms/cotton. Well the first one he took knocked him on his butt and he slept for hours. Sleep is good but he had such a hung over feeling that he said he would keep those for severe pain. He is routinely taking pain meds, at least one or two a day.
Can scar tissue hurt? He just had the scans and nothing was noted so why is he hurting? It is very unsettling to him and me. Both of his doctors told him that this would be an ongoing thing.
We went to Mrytle Beach last week. He did ok but the drive down there and back was hard on him. He sat with his seat reclined and it just breaks my heart to see him move so slowly. He did walk around at the car show for a couple of hours, but it tired him out. (heck it tired me out)
Do I see a difference in him? Is he getting worse? I am so nervous about that. I know that at some point he will get worse, we have talked about it. Will I be strong enough to care for him? Can I do what so many of you, my friends have done?
As you can see I am full of what if's. I will depend on my faith, my family and my friends to get through this. My God tells me he will never leave me nor forsake me. He is my refuge and my strength.
May God have mercy on Steve and me.
Love to you all,
Wanda
Replies
Dear Wanda, Steve and you have been so lucky to have a chemo drug work for so long. Many of us don\'t get that time. He may just need to slow down a little and rest more. Hopefully he will not get worse.
I always think about the what if\'s. But as I watch Brian getting worse and suffering I see he is not living. This cancer has consumed him, his life and our marriage. Brian spends most of his days laying in bed sleeping. This is not him anymore. I do not want him to suffer anymore.
Hopefully Steve will have more time with you.
Love Julie
Sweetie!
So sorry that the pain did not subside while Steve was taking a break from Sutent. It is very strange, especially when the scans show no reason for it.
As long as we\'re living with this awful disease, it\'s almost impossible not to sometimes think about the \"what ifs\". No matter what God has in store for us, He will give us the strength to get through it. Keep the faith.
I love you,
Ingrid
Wanda-
You are a beacon of light, and such great and sincere faith. Steve is so lucky to have you at his side. I am sure he knows this too. This pain is a mystery! Don\'t taunt yourself with the \'what ifs\' - they are a waste of time. Do the best you can under the circumstances and keep your wonderful faith.
lve, gloria
I don\'t know what is causing Steve\'s pain...if the scans are good, then it must be some nerve damage or something that happened during the surgery. When M had surgery under his arm fo remove cancerous lymph nodes, he had nerve damage and his whole arm hurt...it did get a little better over time. Could the doctor give Steve some kind of pain med pump to wear? This way, he could manage the meds more appropriately by just hitting the pump when the pain is worse...they do that in the hospital and I think they have gadgets to wear outside of the hospital. I\'d recommend going to see a pain management specialist. The Oncologist may not be aware of all the tools out there to help Steve manage his pain.
I know how terrible this must be for you. Pieper said it quite honestly....our loved one\'s illness gets to a place where we don\'t recognize the life we once had. The person our loved one once was is already fading. You are both already grieving loss..life as you knew it. I didn\'t realize it was happening to me when I was going through it. However, the time I had with M was a blessing and I clung to every minute I had...I also embraced hospice to help with the pain management... Steve is hanging on so for now, you need to find the right solution for his pain. I am here for you Wanda if you need to just vent. I am so very sorry that you have to go through this. I love you my friend. Linda
Wanda, i am so so sorry that Steve is feeling worse lately. I agree with gloria. to dwell on the what ifs takes you our of the now. I know it is so nerve wracking worrying about what could happen, and so hard not to think about it everytime he feels pain.
Your faith is so very strong and I admire that. Lean on that faith, and lean on all of us here. Here for YOU anytime, and know all here understand the fears of what you are going through.
My HOPES that Steve has a LONG LONG time before anything happens. He has been a miracle so far, and I HOPE with all my heart that he continues to be so you and he will take another MANY trips together!
HUGS my friend and you are in my thoughts! Diane
Wanda...I am sorry that Steve is having such discomfort when you were hopeful being off the Sutent would help. I do know that scar tissue can cause pain. My daughter had a severe case of endometriosis and had two surgeries for it and still have severe pain. She finally went to a specialist last Fall and had another surgery and she is finally much better.
And Wanda you will be strong when you need to be...that strength comes out of love and knowing Steve will need you. There is no question that what ever comes you will be there for him....to hold him, to comfort him and to love him.....always...Hugs, Ellen
Wanda, I. So look forward to your journal entries. Your strength and devotion has akways been such an encouragement. I am sorry to hear that Steve. Is having so much pain. I know that scar tissue can cause pain. I still get gut pain 8 years after the by pass. So it is possible. I hope that this is only a temporary. Problem. I know that you will be there for Steve. Come what may. Hugs a.d support.
Wanda, I know how difficult it is for you to see Steve experiencing such pain and discomfort. You are a wonderful, loving wife and he is so fortunate to have such a caring person to help care for him.
I encourage you to enjoy each moment and make the most of it... and not think about the \'what ifs\'... as Gloria said. Cherish every minute you have together, and I pray that you will have many years together.
Hugs & Blessings, Linda
So sorry you are both going through such pain - it\'s very hard to watch. Praying that things will get better.
Best regards
Vicki?
Dear Wanda - so sorry that you\'re both feeling down and sad about things right now. Pain CAN be managed very well without knocking you out these days - can you ask to see a pain specialist? It really shouldn\'t be that Steve needs to keep the strong meds only for days when the pain\'s really harsh - he should be able to have relief anytime he needs it. It could just be a case of getting the right type of med for Steve. D has been on a vast cocktail of pain meds since before his diagnosis - and I know now exactly which family of meds make him go a little \'bonkers\' and which he can take with none or very few SEs. What did the doctors mean by an \'ongoing\' thing? They must have some idea what it is to say such a thing?
And, dear Wanda, II agree with Gloria (in theory of course - so very hard to put into practice!) - try and stop the what-ifs and the wondering until you need to go to that place.
Love and blessings
Meriel x x x
Thank you everyone for your comments. I am feeling much stronger today and I will STOP the what if\'s. The Bible says you can\'t add one hour to your life by worry so why waste the time. (easier said than done) but I will trust my Lord through this. Thank you to all who have been there before me. I feel ashamed to burden you all. You are my hero\'s!!
Love, Wanda
Don\'t ever feel like you are burdening anyone here! We know this scary journey and you are so lucky to have people to whom you can express your fears, concerns, anxieties....Of course, we know we always have the Lord but so often He uses those in our lives to give us His messages and help provide His comfort.
I know you hate that helpless feeling, but you are doing something wonderful for Steve. He is lucky to have you by his side through this fight! I am sure he knows that too.
Glad you are feeling stronger today, but don\'t ever hesitate to share your concerns with us.
We love you, admire you, respect you!
Love
Angie
As Angie said, don\' t feel you are a burden!
I feel your pain...I see it in my mind. I try to recall the days before the diagnosis and I think, was he sick then? Maybe...I go over and over it. My suggestion to you, Wanda is cherish the moments you do have now as if they were the last....because you really never do know. Its hard to live in fear or live hanging on each dr. apt to the next, so my suggestion is to do as the song says and \"Live Like You Were Dying\"... Cuddle close every night and feel each other.
You ask if you will be able to care for him? Of course you will...I begged Hospice not to release him back into my care but it was what he wanted was to come home and be with his kids and dogs. Essentially they couldn\'t make him stay...It was almost like I brought a new born home from the hospital, he was that bad. I was up every two hours with him. You just do what you have to do. It is love that gets you through, hon.
xo
~Christi
Dear sweet Wanda,
It is so hard to see those we love in pain and feeling helpless because we can\'t take the pain away. You have both been so strong and that strength won\'t let you down. I am glad you are feeling stronger but just try to take each day as it comes and be gentle on yourself. I hope Steve can get pain relief that won\'t zonk him out. God bless you both.
Love you,
Angel xxx