November 2, 2019

October is becoming a difficult month for us. It seems like most of the major challenges we’ve experienced happen in October. We survived another October. This year, we had Noah’s neck lump and a water leak in my sewing room in our basement, source yet to be identified. I managed to get through the month by distracting myself with sewing Halloween costumes. I had to work around wet, smelly carpet and the towels I used to soak up excess water until I took a break long enough to get Adam to tear out the carpet. Eli and Noah took out the tack strip.

November 2nd is also a memorable date. 18 years ago, my grandfather died of cancer. Last year, Eli started chemo at the end of one of the worse weeks of my life. We spent the week in and out of the hospital and finally narrowed down the exact cancer plaguing my son.

Now that Eli’s cancer is in remission and he is done with his primary treatment protocol, he is two cycles into maintenance chemo. What is maintenance chemo? This is a low dose of chemo taken for the intent to reduce the likelihood of relapse. In Eli’s case, it means taking a daily oral med and going to the clinic three out of every four weeks for an IV med. Each four week round is one cycle. All of this is outpatient.

His next scans will be at the end of cycle three. That will be shortly after Thanksgiving. Assuming that there is no sign of cancer, he will do three more cycles of maintenance, ending with scans. If the cancer is still in remission, then no more chemo, but we will continue with regular scans.

In preparation for Eli’s upcoming scans, I have been learning to access his port. We often have scans at a different hospital, which doesn’t always staff nurses experienced in port access and deaccess. I already deaccessed Eli after his last MRI, which isn’t too difficult, but accessing is more complicated. I accessed his port, from start to finish, for the first time two weeks ago. I can now add that to my list of superpowers.

Since week four of each cycle there isn’t an IV med, we get to have a break from going to the doctor’s. This week was week four, so no trip to the hospital. It so happened that I didn’t schedule any other doctors appointments, so, for one of the few times this year, I had a break from doctors the whole week. Yay! We struggled last cycle to remember the daily meds, but with one day to go, we have remembered all the meds. We did have an incident last Sunday where Eli was using a drinking fountain to swallow his pill. I was nearby and he stood up from trying to take his pill and he said he might have dropped it in the drain. We couldn’t see it in the fountain, so I think he swallowed it.

Update [11/4/2019]: Eli officially remembered all his meds for a whole cycle! Now we start cycle 3.