September clinic visit

As of today, we have been at this chemo thing for 1 year and 38 days. As elated as we are to visit once a month vs every Monday I still can't get used to it. Sometimes I crave those counts bc my mind is playing the worry games. Nothing tangible enough to put calls in to drs, just mommy doing her worry thang. Yes we have adapted to the new normal that Maintenance has brought us but the once a month visits creep up on me, tapping me on the shoulder like an old hag's crooked, crippled finger. It reminds me of the nasty journey we are on. In our case (and I am blessed to be able to say this) the past few months have been full of a high energy G, being the fun-loving 2.5 yr old he should be. So, we go weeks with no cancer drama (blessing again) and then boom-chemo visit. As necessary as the reality check is, it brings you down, too. A feeling that seems to never end at times. Honestly,  everyday we are reminded of it (how could we not be when old habits of fever checks, skin coloring, lip checks, urine and stool monitoring, meds and food rules) but still. It is not that during those "off " weeks we are trying our best to forget what is in our face daily. It is just a rude reminder of the life we lead.

I know I sound blah and that is bc I am. These past few weeks I have busted my ass off to get in school/ work gear and now I am running out of steam. I am more than thrilled with how smooth things are at work-it is a huge relief that I have not felt in too many years to count. So, it is not that. I am just exhausted ALL the time. I am not even excited for my bday and anniversary next week. I want to blink right past it all. It is not like big plans can even take place anyway. It is what it is. And staying positive (which is forever our intention) can get tiring. It's like being part of this masquerade at times. You want to have a good time, party and let go. and yet your mind is always elsewhere. On the worry side of life bc you just cannot turn it off.

I know my recent mood probably had alot to do with my anxieties last night. I had this nauseating feeling that stayed with me even as I went about our morning school/work routine this am. It didnt help that I barely slept bc of Caden's cold/teething/whatever it is. I was dreading chemo. Dreading the physical run around, emotional,  and secretary/nursse/mama drain it takes on me. I plain old was not in the mood. And why? I had nothing to worry about, no new developments to discuss or news they may spring on us. The only items on my report to bring to their attention in the past few weeks were how wild, crazy he's been (in a good way) thus leading to the accompanied falls, scrapes,etc. ; T's stomach bug last Friday, my allergy/head cold this weekend and to present, and Caden's signs of a cold as of yesterday; and I was curious what his weight was. So, again, no big worries and yet I was anxious all morning. G was in great spirits last night and was extra goofy and cuddly with me. Loved it. And then he just had worry to my morning coffee. He was difficult to wake. Everyone went about their usual and he didn't budge or much less cry and whine for me as soon as I creep out of bed. T left for school and he still slept (which later in the day he was not happy that he missed his goodbye ritual w T).  I HAD to wake him 20min before we left -just in time for potty, magic creme application on his port and spine and hugs bye bye to Caden. He was really quiet in the car. He never once asked for food and drink. This was against what we were going to try for this spinal day-a tiny smidgen of cheerios and juice before leaving to avoid low glucose levels and a lethargic guy after morphine and procedures. I decided not to bring up the food and take our chances (and avoid any two yr old tantrums that may come w my offering a bit. You know-kinda like that give em an inch and they SCREAM for a mile). We hit every light, traffic idiot and annoying song on the way to clinic. Fun times.

Once we arrived he wanted me to carry him. His legs were working just fine, but his mood called the shots. Now I really wanted to know his counts. Were we in store for a transfusion? Did we really need a REALLY REALLY long day ahead of us? I was getting crabbier by the minute. Not to mention my mind was mush. You know when you read something and then have to go back to remember what it is you read? Or when someone is talllking to you and all you hear is noise and you can't try hard enough to absorb what they are saying? Or when you very well know what your lesson plans are for the day and cannot recall one activity that should be set up before the kids return from music class? THAT has been my past few days in a nutshell.

I was so happy I had a millisecond of a genious thought and brought the Ipad w us. This perked him up. He was in a decent mood, just not his usual giddy self at clinic. Was his body brewing for one of the many viruses floating around our home? Counts said maybe. They are great counts but it was mentioned to me that when ANC is this high sometimes the body is in overdrive fighting off something. Doing it's job the way it should. ANC today was 6, 300 vs 1, 300 in August. GREAT! Hgb 10 vs 8 point something in Aug and platelets 394. Lovely! He did lose 8 oz in the past month tho but at least he remained above 24 pounds.

He fell asleep almost immediately after a bit of morphine was given. During that time he was given some glucose to help us a bit w wake up time later. His glucose level did come up low so they decided to hook him up. He was SO chill we skipped the Versed seeing he was already tired and practically napping in my arms during Ipad breaks. It seems like it takes less and less morphine w each spinal. Impressive. He woke when we were about to start the procedure. He cried a bit during, asking me if it was almost over and that it hurt, but nothing big. I know it prob sounds like I am downplaying it but really he was fine. He is so familiar with what goes on now that I think today he was simply matching the appropriate emotion to the task. And the crabbies didnt help much. It just took a few words of encouragement from Dr Dell and Magan to get him through it. Such a trooper! He seemed more hungry than anything else and eager for it to end so he could go back to sleep.

Afterwards the glucose kicked in and he was back to his chatterbox self. He had his plans. Potty, treasure chest for a "poke reward", a piece of gum (his new big boy thing and he finally has the hang of NOT swallowing it), Mcds, pickup more big boy meds at CVS and then finally home to get T from school. He was excited to get to come with me and go for a walk. I decided to bring the double stroller just in case the day got to him and he pooped out on me.

As hectic as the day was (and as worrisome as I grew) it all ended just fine. T had a good report from his teacher today ( a few moments of bad choice making amongst peers the past couple of weeks has added more stress to mommy's brain and patience and forced me to pull out the behavior management strategy checklists/rewards/consequences that I know all too well). The kids are in good moods (especially considering there is no train playing and tv thx to T), we finished up homework already and we are off to early bed soon. My lazy ass pulled off mac n cheese and green beans for dinner for the kids. I myself am in the mood for cereal (and maybe some chips once they pass out). I am glad the day ended well, that we got a walk in and it is near bed time (even more so since I started this post). Now all I look forward to is Friday night, a night of no plans. Just me and my bed. Proud of you today and everyday, G (as he's hopping from puzzles to running around chasing Caden pretending to scare him). Here's to another month behind us. Crossing fingers we don't see that place again til Oct 3rd!