Story of my life these days...

This is surely how I feel treated these days.  Not by everyone- some people still get it.  But by most of the world- friends who aren't close friends, co-workers, people you sort of causally know who know your story- this is how things usually are these days. I guess I do a great job of putting on my brave face or keeping myself together, and so people think you are always doing well.  But that is not true.  I am not OK sometimes (maybe more than sometimes...) and I am most definitely suffering.  The holidays are already hard and we haven't even gotten to them yet.  Meanwhile the anniversary of his death is looming over me in January.  The date just sits in my mind, like a mountain...overshadowing so much, daring me to think about it too hard so that the tears start falling in hot rivets down my face.  And so, too often, I pretend like thing are OK.  I refuse to let myself go to certain places in my heads during certain times of the day.  I avoid things that I think will be too emotionally painful. Then when I'm sad...I'm very quiet.  And so people think I'm OK.

Looks can be deceiving, people.

Things a 6 year old boy should not have to ask.

Jack came to sit with me & then asked me when John's birthday is. I replied to him, telling him the date (its a few months away).

Then he asks 'Can we celebrate daddy's birthday, even though he died? That's ok right?'

There's someone missing...

I took a picture with the kids yesterday for Easter.  It hurts my heart to take "family" pictures without John.  Its like there is always someone missing from the picture.  I can pretty much just see him right in there, where he should be- next to me.  But there is no John there.  There will never be John there again.  I hate that, its not right.  But I dont want to not have group pictures for occasions, so we took one anyway. 

Christmas

While Christmas was great for the kids- their dad got to come home, they received all they wanted & more (people were VERY generous to us with Christmas because of John's illness. I had to buy and wrap almost nothing. I am immensely grateful for that.) and had good times with family- it was literally the LAST thing I wanted to do.

All this time, all this effort...wasted

I've had it cross my mind a million times to come back here to writing but it was always too hard. The last time I wrote was for our anniversary- now its after the New Year. Its always too hard to write but then I tell myself I *SHOULD* do it, I'll want to read back on this one day. I dont know when, but I'm sure I will. Or maybe my kids will want to when they are old enough one day. I had written last time that 8 years with my husband is not enough. Now I know that 8 years with him is almost certainly all I will get.

Here is to hope.

John finally made it out of ICU about 2 days ago. He is on the acute floor now. We expect he may return to the rehab floor towards the end of the week. I got to spend a good bit of time with him yesterday, so that was wonderful. His lung scans came back clear, which was FANTASTIC news. Probably the best news we've gotten so far. This means no cancer in his lungs, and that we can proceed to MD Anderson once his infection clears. That may be 2 weeks, it may be 4...we wont know. I'm hoping it wont be until after Christmas so we dont have to spend the holidays away from the kids. Thanksgiving was hard for John (away from the kids, in the ICU) and hard for me too. I tried to go and be with my kids but wasnt feeling well. I picked up some bug at some point and spent a couple of days quite ill. It was terrible not being able to visit John for that time, but he basically slept for 5 days in the ICU so I think it was easier on him. So for now, we work with MD Anderson & our insurance company to sort everything out, get them the paperwork they need, and we will head that way to see if there is some hope they can offer us of...well, ANYTHING hopeful. Any treatment that will give us more time, any treatment that will preserve his quality of life...ANYTHING positive. I'm going there with high hopes and hope that I wont be disappointed. Today is our 8th wedding anniversary. While I am happy he is at least not in the ICU today, its sad that he has missed Thanksgiving, and now we will spend only a couple of hours together tonight. I picked up a cake (similar to the kind we had at our wedding) and a bronze picture frame for him to keep a family picture in his room, and I also got a chalkboard frame with a picture of just the kids that they can write on to help cheer him up. Also, I think I'll maybe bring a bottle of wine or champagne. 8 years with him is not enough. I dont know that even 8 more would be. I want 80! Here is to hope.

Still in ICU

So much for being in ICU for 2 days. Now John will likely be there until Sunday. That will make...5 days? I tried to go enjoy Thanksgiving with my family yesterday (parents, my kid, and my aunt) which wasnt really enjoyable. I was happy to see my kids, but things are so hard right now. Additionally, I wasnt feeling well and didnt eat. My mom kept bugging me to eat (dont moms always do that? ha!) but I didnt feel well. I decided to go home and catch a couple of hours of rest before heading back to the ICU because, well, you cant sleep in the ICU for more than about 2 hours at a time. I woke up vomiting, and with a fever. I surely couldnt go back like that and get him sick, and in addition to that, John had started to run a low grade fever and have a slightly elevated heartrate. He also has been nauseated (never vomited though). So the last thing I wanted to do was give him what I had. I called his dad to go stay with him and stayed home and slept. I woke up today feeling *slightly* better (not actively getting sick anymore) but still not great. The worst part is how much I miss John. I'm sad and lonely and I want him better...he was doing SO well and this setback has been very hard. His mom suggested I "suit up" (gown, mask, gloves) and go to see him for a moment today. She's going to pick me up later to do that. I am not going to stay in there long because I still cant risk him getting sick but I just want to see him and let him know I think about him every second. His dad will continue to stay with him. I got a lot of sweet cards and a few gifts today in the mail that helped brighten my spirits. I think if I can see John and talk to him for a few minutes, it will really help brighten my day. My friend offered to come over to hang out after she gets off of work. I initially said 'maybe' just thinking I wanted to have my own pity party but im really much lonelier than I thought since I'm the only one here, so I think I might take her up on the offer. I think I'll stock up on masks though...surely dont want anyone else to get a stomach bug from me. I just am keeping my fingers crossed John gets out of ICU soon. I hate that I will have to go back to work Monday. At least when he was in rehab, I was able to work (for a couple of days...) because he was busy all day. Now he wont be. But they will also start making serious determinations on what ways we have to try and treat the cancer and prolong John's life. That scares the crap out of me, I must admit. I'm worried that we'll get the worst possible news- that the cancer has already spread.