It's been a long week. Actually, it's only been a long four days but it feels so much longer than that. All I've done all week is sit....sit in a hospital. But it's by far the most exhausting thing I've ever done. It is beyond emotionally draining which makes you feel physically drained. I honestly have not ever felt this exhausted.
Here's a quick recap of my week:
Wednesday we picked my Grandparents up at 6:45am and headed to the hospital. Grandpa was in pre-op from 7:30am until about 10:45am. My family and I took turns (three at a time) sitting in his pre-op room with him (I had a private cancer pep talk moment with him though), we all gathered in the room to pray together, and then he was taken back to the OR. Surgery started at 11:15am. Around 6:30pm (or maybe later) he was out of surgery. We waited for the surgeon for a bit and then he brought us into a consult room to tell us about the surgery. We were finally able to see Grandpa in ICU (two at a time) around 8pm. We finally all left the hospital around 10pm that night.
Thursday we were back at the hospital from 7am until 9:30pm. Three at a time, taking time with Grandpa. He's healing well and doing great. He has a tracheal tube and therefore can't talk. He gets frustrated with none of us being able to read his lips and for some reason, dislikes writing down what he wants to say. Reading his lips is just hard because he's so swollen on his left side from them removing his bottom left-side of his jaw. It was definitely a long and tiring day but our minds were put to ease seeing him progressing so well. Even his surgeon was impressed with how well he's doing!
Friday we were again back at the hospital at 7am. Just as the day before, we all took turns spending time with him. Things were pretty much the same as yesterday...Grandpa frustrated with not being able to talk and us not being able to "understand" him. It's hard to see him like this because my Grandpa is always so happy and patient. Seeing him agitated is a rare sight so it was difficult. He's also becoming so annoyed with all the wires. He wants to get up and walk around but can't being in the ICU. He's annoyed with his NG tube in his nose (his feeding tube, which goes down into the stomach and then into the small intestine.) He's annoyed with all the wires and tubes getting tangled when they move him from the bed to the chair and back again. As the day went on, things became more rough for Grandpa. Very rough. (Sorry, but we do not wish to divulge those details). So rough that he needed 24/7 supervision. Mom, Ben (my brother), Leah (my sister), and I volunteered to stay the night and take shifts. Mom and Leah started out but when their shift ended at 1am, I still hadn't fallen asleep (the ICU waiting room is so far from comfortable...which is ridiculous because there's soooooo many people who stay there over night.) At 1am Ben and I headed into Grandpa's room. It wasn't too bad, Grandpa was having a much better night. At 4am, Ben left to get my Mom and sister for their shift. I told him that I was pretty awake so if either of them were tired, I could stay a while longer until I got sleepy. Leah came back and Ben had made the executive decision to let Mom sleep (she's so exhausted and obviously not taking any of this well either.) I got a little sleepy but fought it and around 5:45am, Mom came in to relieve me. At 6am, Uncle Craig showed up. Then at 6:30am, Grandma, Aunt Janet, and Uncle Gary showed up. We finally left at 6:45am and I was beyond exhausted. We went home, slept, showered, and went back to the hospital around 2pm.
We spent the remainder of Saturday with Grandpa and he had improved sooo much from the evening and night before. He wasn't even all that frustrated with things AND I was able to read his lips quite a few times! Even some pretty lengthy and difficult sentences! He was even joking and being his silly self! We stayed until 9:30pm and then came the hardest part ever....goodbye.
Last night I had to say goodbye to Grandpa. It was so hard. I did not want to leave. I would feel much better leaving knowing he was out of ICU. I would feel better knowing he was in TCU. I wish his tracheal tube would have been removed or at least capped off so he could talk. I want more than anything to hear his voice. Seeing him in such discomfort and annoyance is the hardest thing ever. Seeing a grown man, your strong and happy Grandpa, like this is so difficult.
What makes it so difficult for me is what Grandpa said to me in our private moment before his surgery. I told him he was about to embark on a very rough road and that I needed him to remain strong and positive. I told him I was not ready to let him go. I reminded him that of course he'll have bad days, and when he does, that's when we'll carry him. We'll be his strength and positivity when he can't. He then said to me, "Don't you worry! I'm not going anywhere. I've got too much to live for you...you, Grandma, and everyone else. I'm not done living. If you can do it, I can do it. You're my cancer buddy. You'll be my coach. My cancer coach. I'll have you by my side to beat this." He then squeezed my hand and patted my face with the other hand. It took all I had to fight back the tears at that moment. And right now, I'm not able to hold them back anymore. Because I won't be by his side. I knew that at the end of the week I'd have to come back to Florida. I can't be by his side. And I feel so badly about it. I should be there. "You have the phone." But I don't. Because he can't even talk! I left him and he said he could do this because I'll be by his side. I don't even know when I'll be able to hear his voice and be his "coach." He told me that my advice and my words help ease his mind and let him know he can do this. And I'm gone.
I know that in time he will be able to talk. But talking to someone on the phone is so much different than being there in person. I could be a much better "coach" and form of support if I were in St. Louis by his side. I know the phone is MUCH better than nothing, but it's just not the same.
He told him he's glad I was there because he had so many questions. He'd ask me questions about the things in ICU because he knew I knew the answers. Because I had been here. I had an annoying tube in my noise. I had drains. I had the compression stockings. I had it all. It made him feel better to know that someone could understand and empathize with him. I'd explain something or simply say "I know, it's the most annoying thing ever because..." and he'd nod and give me a thumbs up. Showing me his appreciation that I understood. He never once got frustrated with me for not understanding him. He was more patient with me and looked to me for answers.
This is why I hated that I had to leave. All these reasons.
I just feel I should be there. I want to be there.
I know a lot of my emotions are sparked by my own memories. I know what Grandpa is about to go through. Heck, I know what he IS going through. I know the pain and difficulty he's going to endure throughout radiation and chemotherapy. And I do not want that for him. I do not want him to go through one ounce of what I had to go through. Especially because I know his radiation will be far worse than mine (although his chemo should be much easier than mine.) I just don't want that. I wish I could take this all from him. I wish he didn't have to do this. I know he can do it. After seeing his strength throughout the past few days, I know he has the strength and determination to beat this cancer. But it's the road ahead that I don't want him to go through. I know he has to....and I want more than anything to be by his side. Just like he was for me. I want to attend many radiation and chemo treatments like he did for me. But I can't. It's so incredibly hard for me to accept.
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Last night, I went in to his ICU room and said we were leaving. I told him I need him to continue to be strong and heal quickly because I need to hear his voice soon. He lifted both of his arms and flexed his muscles...showing me he was strong and would remain strong. It made me smile and made me feel better. I then told him I needed him to remain strong through treatments and I was only a phone call away if he needed anything. I could see the tears in his eyes as he reached up and rubbed my cheek. I couldn't take it anymore. I leaned down, kissed his cheek as he kissed mine, hugged him so tight, and told him I loved him. He mouth backed "I love you too" and it took all I had to be strong and not cry. I wanted so badly to hear him say "I love you." So badly. I hate cancer!!!
Leah and Grandma then took their turn saying goodbye (It was too cute watching my Grandparents nuzzle noses, kiss each other repeatedly, and just stare in each other's eyes.) As we exited the ICU, Grandma began crying and linked her arms with us. She thanked us for coming and said she didn't know what she would have done without us. I couldn't hold my tears in anymore. It was too hard.
We all gathered our things and walked down to the lobby. I then had another emotional goodbye with my aunt, cousin, and again my Grandma.
This is just all too hard. I'm sure over the week I'll have more of these really depressing, I-wish-I-were-home posts. I won't apologize though...this is my blog and if you don't like it, don't read it.
For those still bearing with me, I appreciate it. I cannot tell you enough how much myself and family truly appreciate your thoughts and prayers. I have some amazing people in my life. I've received so many emails, Facebook messages and text messages throughout the week asking for updates on Grandpa, asking how I and the rest of the family are doing, asking what they can do to help, and letting me know they're praying. It makes me feel so blessed to know so many people care. Thank you!!!! PLEASE keep those prayers coming because Grandpa still has a VERY rough road ahead of him. Honestly, this surgery recovery is going to be the easiest of it all.
{As for the hospital update from today: Grandpa was given the okay to be moved out of ICU. The transport papers were submitted at 2pm. Now, at 9pm, he's still in ICU because a room in TCU has not opened up. We have NO idea how long it will be until a room will become available (they're also short-staffed in there so that's prolonging the move as well). That's all that has changed from yesterday to today. I will try to update as much as I can when I get any new information.)
Still wishing your grandfather well. Thinking of you.
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