I know I haven't blogged this week but it's just been a busy week. Tony spent 5 nights in ICU (I think) and 2 nights on the regular post-op floor. I found out that during the surgery they removed and repaired some small intestine. They nicked his bowel and it was leaking some, that is what he wasn't allowed to eat. They had to move the pancreas out of the way some and apparently the pancreas does NOT like to be touched..so it was leaking some too. They took some samples of intestin and bowel and sent to pathology, everything was good. The tumor on his adrenal gland still had Renal Cell Carcinoma cells even after the IL-2 BUT the mass was so much smaller after the IL-2, they do NOT think that he has anymore cancer in his body, scans in 3 months. Slowly, throughout the week they removed tubes and lines from Tony's poor sore body. Finally on the last day they removed the main line that was sewn into Tony's neck! I removed the bandages from his side and belly, which revealed the deep holes in his body where the tubes were...ummmm I have packed Tony's incisions, cleaned his MRSA holes so I should be OK with this...but for some reason I was just weak. I try to smile and not show this concerned/hurt/worried look on my face...it must have worked. He didn't ask what was wrong. I helped Tony into the shower. I'm thinking how awesome it must feel for him to wash his face, hair, and ummmm everything else without my help. He was still so sore so he just took a quick shower, I dunno...maybe he just really likes me to bathe him???? weirdo lol
The ride home was kind of a chore for me, I drive fast, I have a purpose when I drive...so I had to make a concious effort to NOT go over the speed limit, try to avoid potholes which is very difficult in Cincinnati in March! But we made it.
I helped him to sit in the big comfy chair and got him something to drink. Then I left to pick up his meds and a few things from the grocery. He has to take Hydrocortisone and Florinef everyday for the rest of his life, he is now "Adrenal Insufficient". The dosing for these meds vary dramatically, depending on how he feels. He takes some in the morning and then some early evening. He also has a script for a large amount of cortisone IF he is feeling ill, even has a cold or just stressed or notices effects of something called "Adrenal Crisis". He also has a script for Solu-Cortef which is a vial that has to be injected if he gets so sick or stressed and cannot take the pills. I will be ordering him a medic bracelet that has to be worn at all times stating that he is Adrenal Insufficient. If the average person is in a trauma situation we produce a very large amount of adrenalin, steroids and different hormones that help us recover. Tony will never produce these hormones again, he has to take them in pill or injection form. I was a little overwhelmed when they told me all of this, I just thought he had to take a pill, kind of like I take a blood pressure pill everyday. Then I got a little overwhelmed when the pharmacy told me the vial of medication is not covered by our insurance company. I still have to talk to the endocrinologist about this. If Tony needs this and does not have it, then it is VERY life threatening. I went ahead and payed for 1 vial instead of the 10. We will see.
Tony is now still in a lot of pain and very tired. I read that he will always be very tired but we will see. Tony is just an amazing man that always seems to overcome the worst of the worst so I don't really have much doubt right now.
I'm just so glad he is home, it is sooo lonely without him here! My sister and her family brought me pizza one night, and she came another night and bought me dinner. Of course our friends Rick and Jenny came to let Roxy out a lot and I knew Tori would stay here if I needed her to. You guys are just so special to me and helped me and Tony tremendously through everything. Ashley and Meg had to go home last Sunday but they for sure helped me with the loneliness and sadness that comes when your spouse is very ill. Today I had a knock at the door, I saw flowers and thought awwww I wonder who sent Tony flowers, then the lady said for Teri. The card said "Thank you so much for taking such great care of our Dad! We really appreciate it and love you both very much! Ashley & Meghan" It is just the cutest arrangement, a yellow egg with Daisy's and Roses and a little chick. Very Teri like and cheerful! It really made me smile:)
This has just been a very hard year for me, I really can't describe what it is like to be a caretaker to someone that you share your whole life with, someone that has always been so strong, someone that you wake up with and kiss goodnight to, someone I cook for, clean for, laugh with, vacation with, sleep with. Tony has told people that this is harder on me than him. I don't have the physical pain that he has but my heart breaks every time something goes wrong, every time I give him his pills, every time I give him his injections or when I walk by and see him giving himself his shots in his belly. When I look over at my husband right now and see his dark circles under his eyes and see his cheekbones and his clavicle protruding, see his wedding ring almost falling off his skinny finger, see all the bruises, it just breaks my heart. When all I want more than anything is to be walking in the woods holding hands with him or playing Wii with our friends or just doing "our thing". He is sore and hurting but MY heart is BROKE. I try to be strong and smile and jump every single time he needs something...anything. I don't think he realizes that I cry myself to sleep every night just wanting my husband back. My healthy, awesome, funny, cute, laughing, healthy husband.
Well I did some laundry, made some homemade potato soup and now it's time to relax. I need sleep, not like 7 or 8 hrs but like 24 hours of just SOUND sleep. Keep us in your prayers please, I have to go stir the soup:)
"What we have once enjoyed we can never lose. All that we love deeply becomes a part of us"_Helen Keller
