I’ve tried to write about it before now, before its been almost a year, before the nightmare started all over again. When we were once again, carefree. When we worried less and laughed more. It’s just, the words don’t come as easily as they used to. The tears do though. I’m hoping with the dam broken, the words will come with it.
and I’m not talking about the passport to refreshment either. But come on. How the hell does Paris Hilton “sing” “act” get paid to make appearances at clubs, be a complete waste of space in general and still have time to tweet about her completely vapid life; and I can’t find time to write a blog post since going back to work??And, do not even get me started on not remembering the last time I got my eyebrows done. Oy-vey, where are the damn tweezers?
So I guess I should start off with Gage is doing fan-fucking-tastic. Have you ever realized that by just adding fuck to a word it will totally drive your point home. Like hi-fucking-larious or re-fucking-diculous. Ohmy-fucking-god Gage has leukemia. Thankyousweet-fucking-babyjeebus Gage is in remission! Point made.
So I am back to work. It is hard, I stand on my feet all day, I am tire. All. The. Time. The insomnia that plagued me when I wasn’t working has decided to stick around. I’m starting to get used to four hours of sleep each night. OK, I’m not. Temazapam is quickly becoming my newest bestie, along with xanax and prozac.
I find it is harder than I had anticipated telling people I see on a regular basis at work, where I have been for the last nine months. Obviously all of my co-workers know, but I deal with outside people all day long, a lot who know about Gagers existence; so of course people ask about him. I told one woman, and she started crying and going on and on and on, about how sad and unfair the world is. I ended up feeling bad! So now, I am very selective on who I tell about Gage. It’s not that I don’t want people to know. Hello! BLOGGING HERE! But it is so much easier telling you people; who I can’t see then telling a person standing right in front of me. I just can’t handle the looks I get.
Gage went in for another lumbar puncture. He came out without having got it done, because his ANC was still too low. But whereas last week when his counts were about 200 which means he is at a high risk for infection his counts today was 695 just 55 “points” away from being pass-able. So now we go back again, next week with fingers crossed and a quick prayer, that Gage will pass and we finally get into the maintenance portion of the chemotherapy treatment.
If for some crazy reason that he doesn’t pass and his ANC is not up to 750 by May 9 or his counts go down, Gage would be scheduled for a bone marrow aspiration for the following week. Because at that point there should be no reason for his counts to have not improved. So as long as they go up soon, I will be happy.
Gage and I at the clinic this morning. Waiting, always waiting.
I have anxiety. Everyday, it seems to get worse. I read a story of someone’s baby who didn’t make it and I hold Gage and pray that’s not us. I wonder if what happens when we put his mediport back in will his candida come back? Will we catch it in time if it does? Oh my god, what if he relapses?
For a long time I was able to get a hold of my panic attacks and anxiety and then one of Gage’s doctors said ”we were lucky to catch the candida as quickly as we did last time, because a lot of the times, we lose the young ones before we get to them” …. ”but you’re doing a great job, job keep doing what you’re doing” …
The thing is I don’t know what I am doing. I’m barely holding on some days. I feel like I am being held together with string and one false move and I’m going to shatter and break into a million pieces. I’m not able to fall asleep at night anymore, it seems every time I close my eyes I’m watching a movie of every complication Gage has ever had. I hear it all, I smell it all. The fear washes over me and it wont go away.
I took a CPR certification course yesterday, and as I sat there watching the training DVD, I felt the anxiety start to creep up on me. My shoulders tensed up the blood started rushing to my head. Oh god, please don’t let me start crying, I don’t want these people, these strangers to think I’m crazy. As I sat there I hear CODE PINK (code pink at our hospital means that a child is in distress) being paged over the hospital paging system. I went back to that day. The day we came so close to losing him. I sat there, a I started to sweat, my hands were shaking so hard. I was afraid, I was going to have to leave. But I NEED to get CPR certified! Thankfully, the instructor calls for a break, and I can call the Hubs, who reassured me, that Gage is still here, still alive and that everything will be fine. And for a moment at least, I’m ok.
Later that day I went to my Holy Place. Target and aimlessly walked the isles, eating popcorn and drinking a watermelon slupree basking in the fact, I was by myself. A very rare thing. I found this:
I have to...
Of course I bought it. I don’t know what I’m going to write in it yet, but I keep it with me in my purse and I take it out and stare at the words, needing to see them. Needing to know that what they say is true.
I haven’t written in a while, mainly because I have been hopeful and not wanting to say anything to jinx Gage from finally reaching the maintenance portion of his chemotherapy treatment. It would usually take a person who has no complications in his chemotherapy six months to reach this phase but since Gage is basically Murphy’s Law when it comes to leukemia we are about eight and a half months in without starting maintenance yet. Yesterday Gage was supposed to have a lumbar puncture, but his ANC was too low, meaning Gage is at an extremely high risk for infection. So no lumbar puncture, which means no starting maintenance. Hopefully next week when we go back, his counts will be high enough and we can start treatment.
This is the second week in a row, that Gage’s counts have dropped. Hearing the doctors say, he looks great and telling us he should pass, instead we end up hearing that he “flunked” I hate this waiting, the not knowing. The wondering why his counts instead of going up this week they went down. Having to trust in what the doctor is saying but fearing for the worst. Putting on a brave face and a smile, telling our families this is normal, but never really knowing. Hoping what I am being told is true. Hoping what I am telling them is true.
On the up and up Gage’s hair has started to grow back, and he looks like a fuzzy headed baby chick, his hair is so soft and some bits are longer then the rest like a little comb over. I love to rub my fingers through it. It’s his favorite way to fall asleep. He is also so full of energy that I can barely keep up with him half the time, so I am hoping and praying and wishing that this is just a minor setback in the road to recovery; and that next week is counts are high enough to finally start maintenance.
Way back when, on our first hospital stay when Gage was on like SEVEN different antibiotics for almost every hour of the day beacause he almost died; he came down with a lovely little diaper rash. His diapers were changed often, but due to chemotherapy and antibiotics he still came down with a rash. There was no preventing it.
Please note when I say lovely I really mean the ugliest, most painful, open sores bleeding and blistering type of diaper rash. The kind which took three nurses to hold him down, when changing him. I came to dread diaper changes, choosing to leave the room more often then not, it was too hard hearing him scream out in pain. Because there was nothing I could do, nothing I would say was soothing or calming to him.
It wasn’t until begged for something, anything for the pain that Gage was finally given darvocet. Which he got just in time too, because the Kid started to get his all his teeth popping in at once. Adding insult to injury, in my opinion. But thankfully he was able to go through that time with little to no more pain. Finally, after about three weeks his diaper rash finally went away.
But ever since that horrendous experience I am almost fanatical about changing his diapers. I can’t go through that again, if I even see a hint of redness on his pasty white butt, I lather it in ILEX and vitamin A & D ointment; and say a quick prayer that it doesn’t get worse. I also let him run around naked, not caring if he pees on the floor, that cleans up better then a rash does. I do draw the line at pooping on the floor though, for that I rush him to the potty, so I guess I am also potty training him at the same time. BONUS!
So I guess what I am saying is: when life handed me lemons, I found the tequila and started taking shots. You know best out of every situation and all that shit.
I haven’t mentioned this to anybody yet, because I don’t want to sound crazier then I already am, paranoid. OK, I’m kind of nervous about this next sentence, but here is goes. I think Gage sees dead people.
Dead serious, ***no pun intended***. But do you remember the time in the hospital when Gage almost died? Well, I think that since he almost “crossed over” he was told it was not his time, and to go back. Thank you baby jeebus he listened too. I am not writing this to be funny, I swear. I truly and honestly believe with everything that I have, that Gage has become that creepy kid from The Sixth Sense.
He holds these long conversations, with absolutely no one. Conversations, with wild hand gestures and long pauses that make you believe someone or something is talking back to him. His voice rises and falls in excitement and anger. He offers his “friends” his sippy or snacks. He doesn’t talk to his living friends the same way he talks to these “friends” his whole demeanor changes, he is not shy with them or hesitant in any way. I think he feels safe with them, like a kindred spirit or something
Oddly enough non of this bothers me either. If he does have friends that are no longer in this realm, good for him. Good friends are hard to come by now a days, take ’em where you can get ’em Kid.
If you look back to a post from a couple of weeks ago titled L.P. I complain about Gage having to go the clinic for a lumbar puncture, and how it was going to totally suck. Well Gage never got the L.P. that day, his blood counts were not high enough for him to under go heavy ass doses of chemotherapy, so it was postponed for a few days. He didn’t pass then either, ok…odd. Gages doctor wanted to try again in three days, we put our foot down though, no we want to wait for at least a week.
There is so much stress when getting ready for a lumbar puncture. Because Gage does get sedated, he is not able to eat or drink anything for six hours before the procedure. Which is no fun for anybody involved. I make a conscious decision to not eat or drink until Gage can, and let me tell you I am usually ready to eat my foot by the time we get the ok for a bottle; so Gage must be absolutely starving.
Then the Cyclophosphamide (which is also known as cytoxan) which is just one of the four three or four chemo’s he get that day, can burn his liver, we have to constantly be keeping him hydrated the day before. We never let his bottle or sippy get empty, the same goes for at night. I am up every hour until 4:00a.m. refilling his almond milk, changing diapers, and freaking out that I’m not going to wake up and he drinks something after 4:00a.m. It truly does make for a long exhausting day.
Finally after three failed attempts at chemotherapy Gage had high enough blood counts to actually get shit done. Thank you baby jeebus, because I do not want to have to go through another bone marrow aspiration, to see if horror of horrors the leukemia is back. I did mention the cytoxan burning his liver, right? Well I forgot since that can happen L.P. chemo days are usually eight hour days, because the doctors give Gage I.V. fluids, for three hours before. Still with no food and for at least ninety minutes after his last dose of chemo, with strict rules to keep him hydrated and to change his diaper at the signs of first pee or poop; to avoid a horrible diaper rash.
So since Gage got his lumbar puncture, he has had chemotherapy injected into his Hickman line, for four days straight. He is such a trooper and nothing seems to be able to get him down. I can’t wait for the day that I can say,”do you remember when Gage had to go through chemo, and we never thought we’d be finished?” That’s the day I am living for now.