What’s it like…?

….To live without such fear?

I don’t know if I can remember….This morning Nick was finally sleeping so peacefully…..that I am freaking out looking for his chest to be moving up and down. Was he BREATHING???

Last night, I spent over a half hour rubbing his back trying to help him through yet another bout of severe pain. Almost every night, like clockwork….in his words, his rib pain tries to strangle him. He can’t breathe, he can’t lay still, it grabs him and won’t let go till IT is ready to. And the doctors can find no cause for it.

Two spots were found on the last MRI. One on a kidney, you can live with one kidney. The other? on his liver. You can’t live without that. More fear piled on top of the incredible weight loss, the lack of appetite, the rib pain and the not knowing.

Will we be celebrating Easter? Memorial DAy weekend’s party…will it happen? July 4th. What about his next birthday? Christmas?

The uncertainty of it all…..

And if I feel this way?? How does Nick feel?? I can’t hardly imagine.

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Friday…..

From my archives:
Day of surgery….(Thursday Oct 23rd)
Okay. I can breathe again. Nick came through surgery very well. When Doc Joe  met me in the consultation room….he was smiling. He thinks he got it all. And it doesn’t look like it went into the pancreas.
Nick is in a lot of pain. And that is just killing me. But he is hooked up to some good drugs and as long as I push that button every 10 min, he’s making it through each hour. My heart felt thanks and appreciation to all of you. We have amazing families and friends. I cannot truly express my gratitude to you all for helping me keep my sanity…. It’s hard to talk on the phone when we are letting him sleep as much as possible. It is the best medicine right now. Keep your fingers crossed and those prayers coming that the lymph nodes biopsies come back clear….
One day after surgery: (Friday Oct 24th)
He is up and walking! And his voice is stronger and his pain is less and he is flirting with the nurses and denying it! *facepalms * He will be okay.
Nick still has a long long row to hoe…but at least we are on the upswing and he is feeling MUCH better. Coughing puts him back up to the pain level of 10. But he must cough or end up with pneumonia. I stayed there last night. Got about 3 hours of sleep. Man you can NOT sleep in a hospital!!
He had like 5 sets of tubes running out of him.(It was actually 7) He is down to the IV and the stomach drain. And that may come out tomorrow…..Each one being taken off him is one more thing closer to going home. And he can’t wait to get home to his own bed. He’s feeling more up to company every day. He’s kind of overwhelmed with all the well wishes. He says Thank you…..and goes speechless. Thank you all who have been SO supportive thru all of this. We are FAR from done but with your love and prayers, the road will be a bit easier.  Thank you.
* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
I remember staying there that night. I got like NO sleep. My cot was as bad as his bed. A 1″ mattress and no cover to stay warm, no quiet, construction workers outside the window JACK HAMMERING on the roof before 7am. And I recall seeing flames………I did not want to know what they were doing.
I remember him sleeping sitting upright with his legs hanging off the side of the bed. Trying ANY position to get some comfort. I remember him constantly crying out in pain any time he moved.
And feeling so completely helpless to comfort him. I couldn’t hold him, I couldn’t crawl in the bed with him. All I could do was lay my head on his lap……..and cry.
Matteo had made friends with some amazing people at school. Linus is from Germany and 6’5″ of nothing but friend and fun. I’m so thankful for him and I miss him so. He could always make me smile and gave great hugs too. One day I hope to see him again too.  Matteo could stay with him any time I needed. That was so wonderful and one less thing for me to stress about…I knew he was with friends who cared, too.
I went home Saturday night. I really needed some rest too, so I could be there for Nick….

Meanwhile at home…….

….Matteo is there.

Matteo is our Italian son. He came over as an exchange student in Aug 2014 and immediately became one of the family. My family fell in love with this wonderful young man and adopted him….as he did with them.

He arrived Thursday, Aug 28th, started school Tuesday, Sept 2nd, Nick’s mom passed away Monday,Sept 15th and Nick’s cancer journey started Monday,Oct 20th. I think it was a bit of a wild ride for him too. Coming to a new country and all this stuff happens with his host family. And he was there to support us every time.

Matteo took it all in stride. He was so concerned about Nick. He went with me to visit him in the hospital several times, caught a ride into town once, worried about him and was wanting to make sure he was doing OK. THAT amazed me. Matteo went to school every day, he did his homework, asked questions, told me things that were happening at school…just kept my mind off what was going on at the hospital when I wasn’t there and couldn’t do anything about it from home anyway. He was our son in every way but blood.

Matteo’s mom, Silvia, text me when he let her know what was going on and asked if Matteo should come home. I told her No please….leave him here; I NEED him. Having Matteo to come home to and care for took my mind off the hospital….even for a little while. It helped me regroup and stay sane.  I know that without him with me, I wouldn’t make it.

I took that first week off…..without even putting in for it. I didn’t have a choice in the matter. I had taken Monday off for the first surgery. Tuesday morning, I called my boss and told him I was taking Nick into the ER and I had no idea when I’d be in. I finally came to work that Thursday, was told I looked like hell, and I broke down in the CEO’s office. The CEO had been thru cancer surgery years earlier so he knew what Nick was going thru and his wife knew what I was going thru. (They only charged me 3 days of vacation even tho I took 5 days off.)

I would go in to work for a few hours after 5pm after everyone had left that first week. I did paperwork when no one was around to bother me, got it done and went back to the hospital. I would call Matteo when I was at work and alone to see how he was. He was always like “Stay and do what you have to do. I’m OK.” I felt so guilty leaving him alone but we did spend quality time when I was home.

The second week Nick was in the hospital, I went to work all day and then straight to the hospital after I was done. I would stay till 10pm and drive home then. Matteo was always waiting up for me. I always got hugs. I got school updates. I got garbled phone messages till I told him to just give whomever my cell #.

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Every night before he would go up to bed, he’d say “HUG TIME!” and I would always get the nicest hugs from him. He was a great hugger and I really miss those…..I will be forever grateful for him being in my life at one of the worst times….he made it bearable.

Matteo was a very popular young man and even now….a year later…people still ask me how he is. He and I talk a couple times a week and next summer, I’m hoping to go to Italy. Fingers crossed and God willing……

He is an amazing young man who I love to bits and back. He’ll always be my Italian son as I will always be his ” ‘Murican Mom. “

Thursday dawns bright and early……ugh

I was up and back to the hospital by 7:30am. Nick was scheduled to leave his room at 8am. Needless to say we were both pretty nervous and held each other as long as we could. I know how simple surgeries can go wrong. And this wasn’t gonna be that simple. Minimum of 4 hours.

I didn’t know where to stay while he was there so I sat in his room for a bit. My dear friend Holly came to sit with me. My friend Nancy also came. One of Nick’s ex girlfriends showed up too. Judy is an awesome lady and a good friend. I’m glad she was there too. We moved down to the Cancer Center waiting room. While there, Nick’s brother, Kevin, joined us.

Now, they have set up a cool thing at Mayo. Each patient is assigned a #. And you watch this # on a TV screen. It tells you where your loved one is at any given time. Nick’s #### – in prep, in surgery, in recovery…..a LONG 6 hours. I wrote his # down somewhere…..69something something.

There were a LOT of people watching that screen. And there was a kind older lady sitting at the desk, helping people, answering the phone, and when the OR called, she would give you a consultation room # so you could talk to the surgeon. Someone would even WALK to the room with you! It was awesome.

Anyway……It started out with Holly, Judy and Nancy sitting in Nick’s room with me. One of the nurses then came in requesting that I go to the Cancer Center’s waiting room so they could give me updates. We all went down there except Nancy had to leave…..It was so wonderful having her there too.

We all sat around the table talking and laughing…..I can’t believe we were laughing with Nick in such a serious surgery…but if I hadn’t been laughing? I’da been crying. It was that intense there.

He finally went into surgery about 9:15am….so add 4 hours to that and you get 1:15pm when I should start watching for him to be in recovery. I think it was closer to 2pm before I saw “in recovery” behind his name. Shortly after that, the nice lady at the desk came over to me and handed me this little piece of paper with the #2 on it. Doc Joe was coming to talk to me.

God, my stomach did flip flops, I was terrified he was going to tell me that the cancer had already spread, that it was an awful mess in there, you know…the typical BAD scenario…..

“It’s done, everything went so smoothly! It was basically all in one spot, no trouble rerouting……”  He made it sound like it was the dream surgery where NOTHING went wrong. He was smiling ear to ear, happy with how it looked and turned out.

I walked back to the Cancer Center’s waiting room with a spring in my step and a smile on my face. My supporters saw that immediately and hugs all around. God it felt good to know it went well…….

It wasn’t until later I found out , yes, the surgery went well, it was the recovery room where the trouble was.

“We had to bag him” meaning his pain was out of control and his asthma/COPD were causing issues with his breathing. He kept yelling out in pain, which made him panic and …..well it’s a vicious circle…..I’m glad I wasn’t in the recovery room…….it would have needed padding on the walls.

He finally got back to his room after 4pm. I have a photo of him from that day that will never be published. He’s asked me never to show anyone and I haven’t. Only him. He wanted to know what he looked like with 7 tubes running out of him…he was a mess.

But he was alive.

To be continued…..

Wednesday… and … the biopsy results are in…..

I guess we knew it was cancer before the camera and the biopsy. Something that had just been tickling the backs of our minds ever since the pain hit SO hard on the way home Monday.

Nick told me before he even went in for the endoscopy…..’it’s going to be cancer.’ I reassured him…..we can’t know that till the results come back.

Crap…..I hate it when men are right.

Wonderful Dr. Joe came in and explained it all. There was a tumor the size of a golf ball in the lower part of his stomach; where the stomach empties into the small intestine. This explained to Nick why when he would eat, he would feel so full all the time. His food had to squeeze its way past this lump. Dr. Joe told us that he would remove the bottom 1/3 of Nick’s stomach and reroute the small intestine to hook it back up. He was very confident that it would go well.

Trying to process the word cancer when it pertains to someone you love….is…bizarre. The thoughts going thru my head are like…..WTH?? Then…wonder how much all his drinking days had to do with this. And WHERE do we go from here?? There is no instruction manual for this. You fly by the seat of your pants.

Wednesday was spent……talking to each other. And crying. And talking to God….you know…that deal making phase started early…….and deciding.  As long as he was already in the hospital…just do the surgery. Be done with it.

Keep in mind, this is 2 days after his Laparoscopic gallbladder surgery (lucky duck…4 tiny incisions to my HUGE 6″ long, 1/4″ wide bugger), and two days of intense pain held in check only by major medication.

(Our kitchen counter still looks like a pharmacy…drives me nuts. I should take a list of what is sitting there and find out what I can get rid of.)

Thursday dawned bright and early and the real journey begins….

Back in the ER Tuesday morning….

Nick managed to walk out to the car on his own. Which was amazing considering how poorly he slept – sitting upright (which was basically not at all).

It’s so hard not to drive like a maniac when your man is sitting next to you, groaning and gasping in pain. You have to drive carefully as every bump and lane change makes him cry out. I called ahead to the ER to make sure someone would be there to help me get him out of the car…..”yup, someone will be around.”

No one was around.

I had to go search for someone. I was in tears already….that didn’t help.

They put Nick in one of the ER rooms and a doctor came in. Forgive me but I forget his name. He put us at ease immediately, got Nick on some pain meds and then the talking began….What happened, how are you, are the pain meds kicking in…..and suddenly in walks Nick’s wonderful surgeon, Dr. Joe.

“Are you trying to steal my patient??” and back and forth they went with the good natured banter. It was nice to smile after 12 hours of panic.

Dr. Joe looked at Nick and said “I wanted to run a camera down into your stomach to look for that old blood in 6 weeks. How ’bout if we put you in the hospital, run the camera down now, and we can monitor this pain for 24 hours?”

Nick agreed almost before Dr. Joe stopped talking.

By 3pm the procedure was done, he was headed back to his room, and the camera doc had already told me he had found a tumor near where the stomach empties into the small intestine, it was most likely cancer, and that it had been there a while.

I do wish that doc had had a bit more tact. It was like it was a race for him to tell me it was cancer before the biopsy results even came back. He just had this attitude that he had to be first. No compassion , no I’m sorry to tell you, no hand on my arm to comfort me.

So when Nick got back to his room…..He asked. I told him. And we sat there stunned for a long time………………………..

The week from hell……….

And I do mean the week from hell.

Sunday was good. Nick and I had ‘The Sunday Stroll’ to raise money for Operation Homefront. We did good…but that’s a whole nudder blog….

Monday: Nick goes in and has surgery to have his gall bladder removed. They think this is the reason for his ‘problems’ over the last 2+ years. Nick had an AWESOME surgeon…he looked around a bit while he was in there, noticed some ‘old blood’ and made note of it. Nick goes to recovery…..does pretty good and is allowed to go home by 4pm.

Here’s the blessing in disguise…..He was scheduled to take a pain pill at 4:30pm. We weren’t home yet where he could. So he was 15 minutes….15 lousy minutes late taking his pill and by the time we got home, the pain was pretty intense. Even taking more pills didn’t cut it and by 11pm he wanted me to just shoot him.

And he was serious.

There was no way to sit, stand, or lay down that he was comfortable.

I’ve never felt so helpless in my life….

Tuesday morning, we were back in the ER before 8am……..