This past week has been the hardest week that we have experienced through this entire process. After the doctor giving us the two month timeline we can't get that out of our head. We might as well have a flashing neon light in our room. Two Months Two Months. Our spirits are crushed lower than ever. Going to work everyday was a challenge but it is the busiest time of the year for me. I had to be at work. Dusty's sister has been there for Dusty while I couldn't and I'm thankful that she has the time. My best friend and the glue that keeps me together, Elaine, helped to keep me as sane as possible. Without her, I wouldn't have the strength that Dusty needs from me. She filled in all the gaps at work for me so that I could shorten my hours and be there for Dusty. We had many long talks of whether to do the trial or not. Dusty's strength and weight have decreased below an unhealthy level and we are concerned that the trial could kill him. He hasn't eaten food in weeks, only Boost. He is literally dying in front of my eyes. It's the hardest thing to watch the most important person in your life struggle so badly. He is the strongest person I've ever met, my EVERYTHING! Without Dusty, I'm lost. Dusty saved me in so many ways. I need him more than anyone knows. I've been more scared this week than in the last year. I've tried to stay positive through all of this and really felt in my heart that Dusty would beat this but watching him now, I have my doubts. It is finally setting in that the love of my life might not be here one day. You can't imagine what that feels like.
Dusty has been spending more time with Harland and keeping him home from daycare about three days a week. Dusty is worried that Harland won't remember him. It breaks his heart. We had discussed going to Disney a while back but Dusty can't handle the walking around all day at Disney. We are trying to plan a family cruise for the end of April. We feel that the more exciting the vacation, the greater chance that Harland will remember Dusty from it. We've been taking a lot of pictures and had a family session and a few more coming with Jessica V Photography (the best photographer in the WORLD). Doing everything we can to Make Memories of Us (wedding song).
Reynolds loves his dad so much. We talk with him a lot about what is going on and always ask him if he has questions, but he says he doesn't like to talk about daddy being sick because it makes him cry. :( Ugh. This little boy shouldn't have to stress out about this. He should be worrying about being the fastest boy on the playground and who can jump further. You know, boy things! But we have be "sugar coatedly" honest with Reynolds.
Now it is Friday, April 5th and we are in Houston. We met with the doctor today and the first thing he said when he saw Dusty was, "You look like you've had a rough few weeks." Great, even the doctor notices how different Dusty looks. He looks like a total stranger. He is yellow, has dark circles around his eyes, you can see every bone in his body and he walks really sluggish. He seems like he is going to collapse at any minute. The doctor said all of Dusty's vitals looked good enough to start the trial. He will be admitted into the hospital on Sunday and they will give him a bunch of nutrients through an IV and then start the cathetar and chemo on Monday morning. To say we are scared is a complete understatement.
Don't take this blog like we are giving up. Because we are NOT. We will never give up but we are starting to lose hope and faith. It seems that staying positive has gotten us no where. We will keep fighting but feel defeated at the moment.
*****
Dusty traded his car in on his dream car a 2007 Shelby GT500. He is so happy. He calls it his legacy for his children.
Stacey, I found your story on FB. I too have a husband with stage IV adenocarcinoma of the Esophageal/gastric junction. Diagnosed one year ago.
ReplyDeleteHe is currently on his 17th chemo treatment. Had so many liver tumors they couldn't count them. Don't give up. Mark's last scan in Feb. showed two tumors with barely any activity at all. His esophagus is clear and biopsied benign. my reason for posting is to give you some on line support groups that have been a huge help. This one is FB and private.
https://www.facebook.com/groups/Csnesophagealcancer/357780424333216/?notif_t=group_activity I can get you on if you want. Just friend me on FB and I'll get you connected. Nothing like being with people that are going through it too. Also
EC-GROUP@LISTSERV.ACOR.ORG is an on line forum. With many years worth of archives and very wise experienced patients and caregivers. Many stage IV's living 6, 7, 12, 14 yrs. with no surgery. These are the people we don't hear about from the Dr.'s when we are told our loved one only has a few months.
I am Lynn Petrucci on FB so you can find me there.
https://www.facebook.com/lynn.petrucci.7?ref=tn_tnmn
Prayers from someone who knows what you are going through exactly.
HUGS,
Lynn
Don't ever give up. We ..my husband and I..got the death sentence for him when he was 24 and I was 21 and pregnant with our 1st child. His was a spinal cord tumor in his neck and we were given the death sentence in Atlanta. Long story short....he hung on until our son was born. He was in a hospital bed in our living room at that point. Our son was born with issues and all of a sudden he had to fight again to make sure he was ok. I would stay awake at night and watch him sleep, breath...just making sure all was ok. A total nightmare. I tried to find people to talk to but unless you're "there" others just don't understand. All of sudden I went to the bread winner, caregiver and mother and had to think about life by myself with my newborn. He got much worse over the next 4 years...little bit at a time loosing functions. Now comes the truth of my journey. I prayed for all those years, made all kinds of promises if he'd jus be healed. He was getting really bad and I started major research and found a world mode specialist in New York City. My husband o longer wanted to fight the battle. I had learned to be very strong willed and in control person...at that point trying to fix everything myself. That night..for the 1st time in my life...I sat on the front porch all nite...and I prayed all nite....and I was finally shown the way that night. You've got to become as innocent and trusting as a child and 100 percent turn the battle over to God. I was always too much in control to let go. I totally let go that night, layed it ats God's feet and turned away with total faith, trust and my worry of 6 yrs gone. We were in New York in two weeks, operation done and 39 years later, here we are. The most valuable lesson of my life. Never loose faith, never give up....it's never too late. You've just got to humble yourself as a child and believe. That was husbands 4th surgery.....surgeons at Emory in Atlanta sent him home to die. Surgeons are not in control....God is. This lesson as served me well our 39 yrs of marriage. God has never let me down. I've been where you are....at a similar age. I know what you are feeling. I hurt for you. I just pray that you don't give up. Give it to God and walk away. By the way, my Dad also had Esophageal cancer at the age of 67. It was also a stage 4. Angela Padgett/Jasper, Ga.
ReplyDeleteMy husband was diagnosed with stg 4 metastatic melanoma in his lungs last October. He completed Yervoy, a "new"drug drug specifically for melanoma. His last scan shoard some oncrease in size from the otiginal scan. We are in limbo, the only treatment now would be radiation. We constantly pray that God will turn this around. Keep your head up,stay strong in your faith and turn it over to GOD. Only He lnows what will happen. It's his plan.
ReplyDeleteprayers from North Carolina!!
I lost my mother to esophageal cancer at the end of February, but she was 78 and too weak for chemo. I pray this treatment works for ya'll. I do believe in miracles.
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ReplyDeleteYou remain in our prayers!!! Thank you for the update, stay strong girl!
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