Wow - what a last couple of days. I got so stressed during the day on Tuesday that I did some self-imposed time-out. It was not the fact that I spent the last three nights and four days (non-stop) at the hospital with Jonathan but that he was refusing to take his oral medicine. The other problem is that every time he takes his oral medicine, he will throw up everything which includes the medicine he has just taken. I had already decided to wait until he had finish taking his anti-cancer drugs before trying again - but there was this nurse who insisted that we try again. Of course I was very pissed and I made sure it showed on my face, although I couldn't really hide it because I was tired beyond exhaustion. So when the nurse realized that she needed help to hold him down to force it, and he threw up again, I told her point blank that we will not be trying this until the next day.
I think that this was the first day I was actually looking forward to having Gabby relieve me and take 'her shift'. I got an uninterrupted sleep - about 7 hours at home and I was still tired. I did manage to get about 1.5 hours this afternoon and dreamed for the first time in weeks - and vex I had to get up too. I think the tiredness is now setting in and I'm beginning to feel it more and more. I feel sorry for Gabby as well - because she went to our doctor yesterday to discuss her sleeplessness and also got a checkout. For Gabby - it's harder for her to fall asleep and she wakes up during the night so her sleep is interrupted much more than my own. In my case, my sleep is only interrupted if the nurses want me to do something. As I jokingly tell the nurse, my 'standing order' is for them to wake me during the night so I can help them, especially if it is to change his diaper, etc... Gabby and I have jokingly reassured them that if I look grumpy if they wake me up - it's nothing personal - just my natural appearance (smile).
I think the other thing that freaked me out and why I imposed my self-imposed timeout was that I woke up Tuesday morning and started to panic. I swear I was feeling nauseous and I started to think to myself - don't tell me I'm getting sick. So I know that cancer is not transferable, but I wasn't sure if I got his bacterial infection or some other disease. I eventually went back to sleep but later in the morning I called for the on-call doctor and he was explaining how exhaustion could affect how people interpret or react to things. Fortunately that reasoning helped.
So Gabby is also spending tonight with Jonathan. Apparently Jonathan was 'bouncing' off of the walls today. I'm kind of disappointed I did not get to see some of the old Jonathan. Apparently he is also being stubborn - so much so that he fell off of the bed, and even a chair, because he insists on doing his own thing. The good thing was that no injuries occurred but I'm guessing he is just venting? I went up to see him around 8:15 pm but he was sleeping.
I just spoke to Gabby on the phone - around 10:45 pm and Jonathan is throwing a serious tantrum. He refuses to put on his diaper and is on the ground crying. I could imagine how frustrated he must feel and I hope he burns out his tantrum soon. I suspect the shot he got tonight probably contributed to triggering his tantrum. What he does not know is that he has to get a shot every day until his next rounds of chemotherapy.
I guess the other part of my frustration is that I am so drained I have no idea how I'm actually going to do this five more times - for the other rounds of chemotherapy plus go though surgery and stem cell transplant. I guess I went though a period of feeling hopelessness. Luckily two of Gabby's colleagues stopped by to visit and it perked me back up. I don't know if people realize how much it helps us just to get visitors. It's a great distraction especially since we can talk about other things or make jokes. I'm kind of wishing the Young Adult group at my parish has another poker night or something - as it will be a good excuse to go hang out and relieve some pressure. I know Gabby's mom's group is going to have some sort of Valentine's Day party and Gabby was thinking of going with Arielle - and I know it will do her some good. Of course, I'm looking forward to our date night as well (smile) which I'm hoping is soon.
The plan is for Jonathan to be released soon - maybe as early as Friday. So if that happens and settles down at home - it will make things a little easier.
It's now 11:30 pm and Jonathan is still having his melt-down. He has been crying for about 90 minutes but he is due for a dose of medicine (via his IV) which will also help calm him down. I remember telling Gabby that they shouldn't wake up Jonathan to give him the shot - but Gabby does not like to 'put her foot down' with the nurses. I know I'm staying with Jonathan tomorrow night until he is released - because sometimes - depending on the nurses you get - they can either work with you - or you have to work with the nurses.
So we have two hurdles to deal with at home - oral medication and shots. Unfortunately there is a third hurdle to come, that is, Jonathan losing his hair. Strangely enough - before all this started - Gabby was cutting Jonathan's hair and he said that he didn't want a bald head. He was so adamant that he does not like a bald head. Even when I cut my hair very short - almost bald - he insisted he didn't like it. Gabby found, in retrospect, that his comments were so strange, so we already know that he is going to have a serious issue when he loses his hair. Maybe if he does well at home - during his last week of the first induction phase - he could go to his Pre-K class and spend some time with his friends. He will definitely enjoy seeing his friends and will definitely take his mind off of things.
I will end this entry with a positive note. One of the specialized tests done on Jonathan's bone and bone marrow came back. The results were negative - which is good news. Apparently if the test came back positive - it will move him from the high-risk category to the ultra-high risk category (these are my own words - not the one from the doctor), so it's some positive news. We've also been told that Jonathan is doing well - compared to other cancer patients. I don't know if they are comparing him in relation to the induction cycle he is on, that is, are the other patients also on their first phase or are they later on in their cycle? I do know that Gabby said she met a parent with a child in the same situation as Jonathan and the little girl was four years old and on her fifth cycle and she was not looking good.
Opps - i promised to end this on a positive note - well - tomorrow is a new day - we'll see how it goes. I did manage to go to mass at the Cathedral at lunch time. It was a nice service and a decent sermon. Gabby also met a seminarian attached to the hospital. I remember when our social worker was telling us about the clerical services and counseling offered - I mentioned that we prefer to speak with a Roman Catholic priest and that we know a couple in case we needed to talk to one. So it was nice to have the hospital to spontaneously remember and bring a 'priest in training'. The seminarian also gave Gabby communion as well.
Yep - definitely a better way to end this entry (smile).
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