For the first time in forever, I have no idea how the summer will play out. I have two weeks of camp scheduled and that’s it. I have a one way plan ticket to New Jersey. I have two weeks booked in Bali, but one hand on the travel insurance policy in case it all has to be canceled in a second. How did it come to this? How did me, the perpetual planner, end up in my worst nightmare, a summer unplanned?
As readers are aware, my father was diagnosed with cancer in February. After two grueling rounds of chemo we received difficult news – the chemo didn’t work. The tumor didn’t spread and didn’t grow, but it didn’t shrink. We did second opinions and a number of visits, but it all came down to the same recommendation. Surgery. And not just any surgery. A 12-14 hour maxillectomy surgery. If all goes according to plan (and as I’m learning nothing in cancer goes according to plan), he’ll have a two week hospitalization, four week recovery at home, then (if he is healed enough) 6-8 weeks of intensive radiation and chemo.
As all this began to sink in, I realized that my plan to work remotely and just take a few days for the surgery was not going to work. I couldn’t even consider time off for just a few weeks. No, I began to realize that this called for more drastic measures. After some soul searching, discussions with my husband and work, we agreed. I am taking a 10 week family medial leave of absence so I can care for my father. After much back and forth I was able to get the paperwork needed and the leave approved. Surgery was scheduled. This was happening.
But as I mentioned before, cancer is never straight forward. My fathers’ surgery took weeks to schedule. Due to this his new oncologist at Sloane-Kettering (where we transferred care) decided to give him one more round of chemo. But they added a new drug, a more intensive chemo called 5FU, that gets delivered over 4 days. Oh wow, was that a bad idea. My father, who had previously tolerated chemo well, had a bad reaction. He ended up sick, dehydrated, and with thrush. He became so dehydrated, he was tachycardic, and had a lot of chest pressure. He was getting IV fluids 3 days a week and was hospitalized once for the weekend. It took him almost a full two weeks before he finally got his heart rate back down and to have a pain level that allowed him to eat and drink. Then, just as he is healing, he started to get a cold. His surgery date was touch and go for a while.
In addition, the surgery was scheduled for 4 days before the weekend of BOTH my children’s recitals. For a full minute I thought that I might be able to fly back home for the recitals and return to NJ. Then my friend, who’s a doctor, reminded me my father would be trached and not able to communicate. She set me straight. In the hospital when he can’t communicate he needs an advocate. That’s when I realized that I was not going to be able to see these shows, and cried for an unreasonable about of time for the loss of that time and experience with my children.
Finally, I wanted to bring my children with me to New Jersey. But the surgery, will leave my father with some significant facial changes, that will be even more dramatic as he is healing. After discussion my husband and I decided that I will not bring the children until he is more healed and the wounds are less dramatic for them. That leaves him single parenting for a while and me, traveling back and forth between coasts for much of the summer.
There you have it. I don’t know when my father will be healed enough for me to step way and come home. I don’t know how he will react during the 12 hour surgery. I don’t know if it will be two weeks or two months of hospitalization. I don’t know when the healing will end and radiation will begin. I don’t even truly know if he’ll need to or be able to do radiation after the surgery. This planner needs to spend the summer learning how to go with the flow. How to plan just a week, or days, or even only minutes in advance. I’ll have to take each week to see if camp is needed. I won’t get to spend hours finding the right mix this summer, it will be what’s available that week. I don’t even know how often I’ll come back to check in on my kids. All I know right now is my flight to New Jersey and the date of the surgery. For someone like me, this is the most terrified I’ve been in my life.
But I do have hope. I have hope that he will be well enough for me to leave for two weeks for my birthday trip. I have hope that he will heal enough for me to bring my children out to New Jersey to see their grandfather and enjoy a summer of beach and home with mom like I did. I have hope that he will be well enough for me to come back home in August and return to work and my kids to school with full confidence that he’s on the mend and we will have many many years together. Life will never be the same again, and this summer will be one we remember forever, for good or for bad. But I have hope that all the turmoil, all of the stress, all of the sacrifices will be for my dad to have a brighter future for years to come.