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.

The treatment concensus, so far...

So LSU Shreveport's tumor board and the oncologist here agree on the same basic treatment route- the tumor in John's back has to come out. This unforuntely means that he will most likely lose all or most (but probably all) function in his left arm because the tumor is either wrapped up in or situated in a whole lot of nerves that control the left arm...I didnt see the MRI's for these...now John cant have MRI's because of all the metal in his neck. The oncologist here still wants to Stage his cancer...however our adventure with leaking spinal fluid and the ICU has put a bit of a hold on that. Also, the neurosurgeon said the tumor, or the tons of nerves surrounding it (again, not 100% on what exactly is going on at this spot since we first were just so concerned with removing the SPINAL tumor) are very complex and he isnt comfortable doing the surgery. This means we'll either go back to LSU Shreveport (which I absolutely DO NOT WANT) or to MD Anderson. They have a sarcoma team there and this cancer is considered a sarcoma, so this seems like the best option. I hate that it means that in a few weeks I'll be stuck away from my kids while we sort out what needs to happen with the tumor aside from surgery- any chemo, radiation, etc. It sucks being in limbo. It sucks that John's best option is to cut a 2-3 inch tumor out of his back and lose the function in his left arm (he's left handed). It sucks that we're dealing with ANY of this. It sucks that no one managed to catch this in the last YEAR that he was having clear problems with his arm that shouldve AT LEAST required an MRI of his arm or spine and that we would be probably going through WAY less crap if he had ever been properly treated. It sucks that even with this surgery, my chances of a long term life with my husband are not great. I hate how unfair life is. So right now we wait in the ICU, then acute care, and have John's incision site clear up. Meanwhile we work out getting approval on getting over to MD Anderson so that when he is better he can go see about trying to get this tumor out of him instead of just letting it grow or sit there.