Six Letter Word [Kaylor]

December 2016 (Part 3)

                   

The test results after my appointment had been both good and bad, which was pretty much becoming the norm. My white count was up, so the excruciating pain from the white cell booster shot had apparently been worth it. I was officially qualified for my medical marijuana card and had it in hand, so they could recommend exactly what to try and how often, a very weird experience. It was definitely odd to discuss with Dr. Miller how much I'd been smoking and how well it worked, but I know she needed the information to know what to tell us to get at the dispensary only a five-minute walk from the hospital. She had to sign another copy of the certification, sort of like a prescription that I, Karlie or Mike would have to take to pick up my first doses. She made me promise I wouldn't use any more of the recreational stuff, and would stick to the medical version for the rest of my treatment. She was prescribing two different types. One for general use during chemo to reduce pain, nausea and vomiting and stimulate my appetite. Another to use only when I was getting the white cell booster shots which was intended to combat severe pain. The regular one would come in a vapor form to be inhaled, since it was intended to relieve vomiting, among other things. The pain relief version would be a pill to swallow just like regular pain meds.

Those were all good things. My PET scan didn't look much different from the previous one. Side by side with the original scan from my diagnosis, it was possible to see that the areas of red were smaller than they had been. But there weren't fewer of them. Other than the ones they'd removed during surgery, which seemed like it had been a hundred years ago, none had completely vanished. It was hard to be optimistic in the face of results like that, even as Dr. Miller insisted that she hadn't expected much change with only one round complete. It felt like I'd struggled through four weeks of vomiting, and diarrhea, and pain, and exhaustion to barely make a noticeable change. It was incredibly defeating. Even Karlie had a hard time trying to be sunshiny. Dr. Miller and the team were very sympathetic. Everyone hopes for the miracle. For the metastasis to vanish and be cured. But we weren't talking about a cure anymore. Remission was as good as we were going to get. Five years of that and they might be able to talk cures. That was hard. Happy Birthday and Merry Christmas all at once. And yet my team insisted that I had a great chance of getting there, as hard as it was to believe, looking at how my results HADN'T changed. Three and a half months and all I'd done was gain and lose weight and gain a couple of scars and lose my hair.

Karlie and I took the weekend to cry. We cried about the results, and the way things hadn't changed. We cried about how unfair it all was, about how it shouldn't be this hard. We cried about the fact that no one should ever have to deal with this. For a brief moment we cried for the things that we might not get. The future we might not see, the children we might not have, the matching wheelchairs in the nursing home that we might not get to share. We laid together on the couch and talked about the what ifs and let ourselves wallow, for a moment, in the fear and sadness that came with accepting, together, that we weren't getting the dream outcome. And then we sat down and talked about the future. The one we wanted. The kids and baby proofing the Franklin house and spending summers in Rhode Island and teaching the kids to swim in the pool with George Washington looking on. Who would teach them to drive when they turned sixteen, and what we wanted to do when the spotlights turned off and it was just the two of us, living our lives, without the music and the modeling being first all the time. Because we couldn't end on a note of defeat. We had to keep planning for the future we wanted, because if we let ourselves stay in that place, if I let myself stop fighting, then the fears would come true, and while I had to accept that losing this fight was possible, I didn't have to accept that it was inevitable.

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With my white counts up, the pain gone and no chemo or radiation to go to, we were able to go out the week before Christmas and shop for our families. The plan was to spend the holidays in St. Louis. I would stay with the Klosses while my family saw the extended family. I would pop over for a visit if no one was sick, but with so many little kids we had to be careful, even with my counts back up. And then we would have a Swift-Kloss Christmas and celebrate Dr. Kloss' birthday. Josh had been supposed to go to Hawaii with his family and Jared had invited him to still come, even with everything going on in their family, so he was going to go, but he was stopping in St. Louis on his way west to spend the first night of Chrismukkah with us, since Karlie had invited him. So we also hunted down a Hanukkah present for him, and a menorah since we didn't actually own one and didn't know of anyone in St. Louis who did. We snapped pics of them and texted them to a few of our friends to make sure we were getting a good one. I spent a day making monogrammed stockings for the entire Swift-Kloss clan, and made one for Josh too. He might not have been my favorite person but I wanted him to feel welcome. He'd sacrificed a lot for us, even though he insisted we hadn't had anything to do with it. Everyone needs family, and since for the moment things were messy with his own, I wanted him to know he was welcome as part of ours, even if it would take some getting used to.