I haven’t posted recently because it has felt like we have been caught in an endless loop. We have been going to the NICU every day for 84 days. I have been doing chemo since the beginning of February. It has felt like it was never going to end…
Putting the Emo in Chemo
I have been putting the emo back in chemo. I have chemo treatment scheduled every Thursday. To keep things feeling lighter, and as sort of an inside joke with some of my friends, I have been dressing up. I put on a black wig with bangs swept over my eyes which are encircled in thick black eyeliner. I wear a black band tee and distressed, black, skinny jeans. My checkered vans adorn my feet, and I accessorize with different earrings, spiky wrist cuffs, studded belts, and lock chain necklaces. It helps me to focus on something other than the chemo.
For a sec there, it got really bad. One week I didn’t get treatment because I was very anemic, and they gave me a pint of blood instead. More recently I had severe, and very weird symptoms. I have had a blind spot in my vision three separate times, and occasionally my vision would get blurry in one eye. I also had extreme confusion. There were terrible toothaches, I had a sore stiff neck, and my stomach was upset. My knees also got super swollen and stiff and it was hard to stand up. Depression swallowed me. I thought it was because of the Gabapentin I had been prescribed for neuropathy, but I stopped taking it and the symptoms persisted. I did an MRI and learned it was, thankfully, not a brain tumor. This week I have been taking steroids and all of those symptoms went away. This means they were side effects of the Keytruda, which means I will no longer be taking it.
I have two chemo treatments left. That could be this Thursday and the next and then done. I also know I could become anemic again or something else could happen. Because I have been doing treatment for so long, and there have been other problems, it doesn’t feel real that the end is in sight. It’s like the first few moments of sunlight where you can barely tell the sun is going to come up. I know once it does it will be just as fast as watching the sunrise. After those two treatments I will have 30 days so my blood count can recover and the risk of infection drops, then it sounds like I will be able to do a lumpectomy. They will do an ultrasound to figure out if that is really the case. If it is, then it will be surgery followed by 4-6 weeks of radiation. And…if I am not doing Keytruda, I may be able to attempt relactation and try to breast feed, which I something I would really like to try and do!
Baby Hungy
Speaking of feeding., the little one has been taking full bottles! They weigh 6 lbs now. This morning we received great but shocking news. They are going to try to wean fully off of oxygen. This morning they turned it down to 0.1 liters, which is the lowest volume it can go without being off. If they do well with it, they will take them off of nasal cannula tonight or tomorrow. They did well with it while we were there this morning. Additionally, if they take 47ml for three feeds in a row out of a bottle, they will take out the NG tube. And if they take full bottles for 48 hours in a row, they get to come home! Initially they told us that would be as soon as Tuesday or Wednesday. Later they said Friday, because they need an MRI, echo, hearing test, and eye exam before discharge and all of that has to be scheduled.
Again, because we have been there for so long, it doesn’t feel real. It feels scary to be hopeful. It feels like something else is going to go wrong, and they are going to have to be there another month. And like that will just happen over and over to both of us, so that I am never done with treatment, and they will never come home. The rational part of my brain knows that is not true, and slowly I am starting to let myself believe that things are turning around.
It is here. It really is here. I really am almost done with treatment and cancer free. They really are coming home. It is really happening. No, really brain, it is.