Male oncology nurse: Does he have cream on his back? Me: …. Him: Does he have cream on his back? Me: Wait, what? He passed? Him: Yup, his counts were 1,100 ME: Shutthefuckup, oh my God. We didn’t think he was going to pass, because he had a cold last week, and we’re all sick at home, and his counts dropped like 20 points in so many hours. He passed? Are you sure?- At this point my voice cracked and the male nurse asked if I was OK.
Honestly I wasn’t sure if I was Ok. I wasn’t really sure how I felt. Of course I was so freaking excited obviously because Gage finally “passed” from delayed intensification to maintenance but scared because holy hell, MAINTENANCE! we have waited nine long months for this. Three months longer then most, because of all the complications. Also because, we are kind of in the chemotherapy home stretch. What if the cancer comes back? We now have more freedom to go places, because maintenance generally means higher counts. How do I go from never taking him anywhere to suddenly start taking places again? I mean there are germs everywhere. EVERYWHERE. ***note to self ask for higher quantity of Xanax, and stock up on hand sanitizer wipes***
So he passed and Gage had to get a lumbar puncture, where his amazing doctor inject chemotherapy medication directly into his spinal fluid and test the fluid for any leukemia cells that should definitely not be there. It is such a stressful time, Gage hates to be held down. Hates it. In the past we have had to have three nurses and myself hold him down, and that was with benadryl and fentanyl. Let me tell you, not fun. At all.
This time it was different though, this time he didn’t try to fight us holding him. He did cry a little, but I sang him songs, traced his eyebrows and nose with my finger and gave him what felt like a million kisses. Telling him that he is such a strong brave boy, a fighter who I couldn’t be prouder of and that I loved him more than words can ever express.
For the next two and a half years Gage will be on a cocktail of chemotherapy drugs, he will get vincristine injected into his port, which hopefully he will get put back in within the next two months. This kid needs a bath, he hasn’t had a “real” one since December 2010, he misses it and sponge baths just don’t cut it. He needs to soak. Then every three months he will get a lumbar puncture to make sure the leukemia stays gone.
He is on the road to recovery people. It is long and so very scary and dangerous. But he is making it. He is surviving.
So this day came way sooner than I thought it would have. I don’t know how ready I am for it, but to say the least I am so shocked, I don’t really know how to react. Monday, I’m sure the panic attacks will start as will my first day back to work.
I found out today from my union that my benefits ran out back in February and that I have no insurance if I don’t start work on Monday. Fun times oh, and that I owe $2000.00 that can be paid in two payments in order to keep my insurance. YAAAY! -read sarcastic-
So I can ignore the $2000. bill because lets face it, I have not been working since August and extra money around these parts is scarce. Especially that much extra money but not paying means losing my insurance and Gage kinda needs it. Not sure if you heard but he has leukemia. FUCK. fuckfuckfuckfuckfuck.
Sorry, I’m not going to not pay the bill. Obviously, I have to. Money is just going to be tight around here for a while, but he is totally worth it. Don’t feel too bad for me because I didn’t mention that the bill was actually supposed to be $3000. but I talked them down to $2000. “Totally based on my powers of persuasion, you proud? “<— Best. Movie. Ever. So you see it could have totally been worse.
Just in case you were all wondering. I love my job and I am so grateful that I even have one in this economy, because this writing business sure don’t pay. I am also grateful to have health insurance because if I didn’t Gage would have a million dollar or more medical bill. That I know for a fact, I can’t pay.
Now for a bigger problem. What do I wear on my first day back to work after nine months?
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.
Oh. My. God. I swear I thought I was pregnant. Just writing those words makes me clammy and sweaty, I think I’m gonna puke and not because I am pregnant, thank you baby jeebus! Yes, I know you’re all saying but Momma you’re on a reliable birth control method what happened? How could this be? 0.1% that’s how it could be.
For months, I have been dizzy like crazy and vomitt-y everyday all day. OMG! I could have been one of those women who gave birth on the toilet! ACK! could you imagine? But I bet you all didn’t know I’m a certified Google doctor. So when I typed in all of my symptoms, Google straight said, you maybe pregnant; get a test. After I picked my scared ass up off the floor, I ran to Target and bought the test. Three of them, all NEGATIVE ***cue the singing angels***
…So wait. The good news is I’m not pregnant. Then where the hell did the eleven pounds I have gained since February come from then?! DAMMIT!
I have been an emotional wreck, crying at the drop of a hat. Like waaaaaaay more then usual. At way stupid stuff too, but come on who ate my flaming hot cheetos?! dammit, I was looking forward to eating those while reading Two Kisses For Maddy*, which even if I hadn’t already been an emotional mess, this book pushed me over the edge. I recommend it for anybody who wants to read about true love, that was lost and the power of survival. Matt truly is an inspiration. It was a great book.
TWO KISSES FOR MADDY
Quick ask me a medical question, and I will get you an answer on Google.**
*Also Matt nor Maddy have a clue who I am. They probably don’t really even care what I think, so obviously I was not compensated in anyway for reading his amazeball book. But Buy it anyway.
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.