Starting a new normal

We began LTM (long term maintenance) on Monday. It went as well as it could have gone and Calum’s health is right where it needs to be. Going into it, I had a very heavy heart. The idea of starting back up on chemo again after this nice time off was nauseating and, after a long day at the hospital with a spinal tap that we had to wait for until nearly 1pm without food or water, followed by intravenous chemo, and two oral chemos at home, it really hit me that this journey will continue to test us.

The reality of what the long-term entails is so much more unrelenting than I envisioned. The weight of giving chemo in different combinations at home every day for the next 2.5 years feels so burdening. There will not be a day that passes that I won’t worry about his medicine. There will be no breaks, and the consistent use of steroids in five day pulses each month is, frankly, a real son of a bitch. Just two days into steroids, Calum’s mental state is incredibly volatile. One minute he is in a full-blown fit of tears needing to be held for a solid ten minutes (over something serious such as Faye wanting to sit on the couch), and the next minute he is unnaturally overjoyed by eating crackers. The swings are jarring, and keeping my own composure is a major task. The steroids will take a few days to leave his system after finishing his doses, so my guess is that we are looking at more than a week out of every month of seeing Calum in a very altered and difficult state.

Calum was given a couple of books back in January from friends that discuss feelings in child-friendly terms. When Calum is on steroids, I use these books as a tool to get a handle on some of his feelings to make it easier to discuss when he is melting down during the day. Tonight, when we got to the “sad” feeling page, I watched his chin quiver as he fought his tears and explained to me that it makes him sad when he is in trouble. Watching him feel that “sad” feeling in real time as we discussed it was so painful because I know this medication truly makes him struggle. His emotion is making me consider using the widely known “limp noodle” method of disciplining for a while. Speaking of noodles, there are some laughs that arise from Calum’s steroid side effects, which are mostly related to his appetite. This afternoon he asked me if I, too, thought the basement smelled like pasta. He led me around the room trying to sniff it out. We didn’t find any, but he did inhale a man-sized portion of tennis-racquet shaped pasta for dinner.IMG_0959

This is tough to get used to, but get used to it, we will. I think it will take a couple of months to find a rhythm but, every time I start to feel down, I remind myself we are so, so, so lucky to have these proven and available medications. Just as we said from day one, as long as Calum is going to be OK, we can 100% do whatever it takes. Right after his spinal tap on Monday, the doctor who performed it came out to speak with us and let us know everything had gone well. She talked to us for a while about life ahead and congratulated us on getting to where we are with this process. She reaffirmed for us that, if Calum gets sick or picks up an infection along the way, it is not a set back and they will know how to handle it. As I told her how much we appreciate everything they have done for us and how lucky we feel to be at MSK, I broke into tears. I have never cried in front of one of our doctors before and, through my tears, I told her I was OK. I am OK, too, because even though life is reasonably difficult right now, I have a happy family and my son is with us. I thank God every day.

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