There was a point in time when I thought that battling the treatment would be the hard part. Jeff’s treatment was no short of life sucking at times. It literally took everything from him. Right before Jeff began 30 rounds of proton therapy at MGH, we got the “wonderful” news that he would also need chemo infusions every day prior to the proton therapy. During those 5 weeks, it was like a full time job for him; only one that zapped every ounce of energy he had with a nice side of nausea. After kindly being given about a month to recover post radiation, he began rounds of inpatient chemo treatment every four weeks for six months. Chemo threw us a whole new set of difficulties including during and post treatment sickness, fatigue that can’t even adequately be explained by calling it fatigue, neutropenic diets consisting of extremely limited foods that ruled out most things people would kindly cook for us, followed by neutropenia and neutropenic fevers that resulted in additional hospitalizations.
So many people were there when we needed it and in ways that I really can’t explain and will be eternally grateful for. From meals, to check ins, to even a friend that came by to fold my laundry. We dealt with such sadness and loneliness at times. During the neutropenic precaution period, which started the Monday after his treatment rounds, aside from the limiting diet, Jeff also couldn’t be near too many people. Conveniently it was the beginning of December when he began inpatient chemo, right at the beginning of the height of flu season. During those precautionary periods Jeff’s white blood cell count dropped dramatically putting him at significant risk of catching something…anything. As a result, we had to limit a lot of what we did or who we saw, especially during that time. What made it worse is that initially Jeff got pretty sick during those periods.
The first time really caught us off guard. We were optimistic that the hospital treatment itself went relatively well. Our optimism quickly changed a week later when he became significantly ill and we found ourselves rushing back to MGH. What followed was an adjustment in the subsequent chemo dosages as his his while blood cell count was so impacted that he likely became sick from something pretty slight, possibly even his own gut bacteria.
It was a difficult time. I felt the pressure of trying to manage our house and keep Jackson in a routine, while also having a suitcase bag permanently packed and ready to go. My mom and MIL were ready on speed dial to implement immediate support if I needed to rush Jeff to the ER at any point following treatments. It was a difficult time. It was sad time, and even though many people were there or offering to help, it was lonely and often isolating. We longed for that time when we would end treatment and begin to rebuild a sense of normalcy.
Celebrating Jeff’s final round of chemo and end of treatment: 4/29/20
I imagine life following treatment is never easy and it takes time for things to feel normal again. When you end treatment in the beginning of pandemic it feels like this cruel joke the world is playing on you. It has to be a joke right? I’m still waiting for the j/k.
Surgery and treatment turned our lives upside down. Nine months of social isolation, nine months of worry, nine months of the ups and downs of the physical impact of treatment, nine months of working so hard to create consistency and normalcy for ourselves and our then 2 year old. Nine months of longing to begin to rebuild only to roll right into a pandemic that would necessitate continued isolation in most areas of our lives coupled with a side of COVID anxiety.
The more sad part was that when the world slammed on its breaks in March to isolate, the immediate impact was not so hard for us. We had been isolating for the past 8 months. That part wasn’t so new for us. As a family, we survived two emergency brain surgeries, the ICU, inpatient rehab, shunt surgery, two lung drain procedures, 30 days of chemo/proton therapy and 6 rounds of inpatient chemo followed by a few additional hospital admissions for fun; only to roll into a pandemic and the fear of COVID 19 and the possible impact that would have on us, on Jeff.
I remember Jeff’s last two treatment rounds, the end of March and end of April. I was sick with worry. Should he even continue treatment, was it even safe? The pandemic and its effect were still new. What we did know was that it was highly contagious and the hospitals were basically on lock down. Which meant I wouldn’t even be able to go with him and stay with him as I typically would. It meant the friends who would pop in to help break up the day and the reminders of what was happening wouldn’t be allowed to visit. His Dr. assured me that treatment was necessary and they were taking every precaution to keep things safe. But it meant he would need to endure the final rounds on his own and I would need to sort through my anxiety and fear of the possibility that COVID may put him in the hospital, again; before we even had a chance to get use to being done treatment.
Post treatment continues to take from your life. Maybe not in the constant appointments and eventually the side effects begin to subside, although not completely. Your life is in front of you only you don’t feel the same, and quite frankly you’re not the same. Out family is not the same; Jeff’s not the same. Thankfully not in any life altering way that is noticeable, but the undercurrents of the diagnosis, the impact of treatment, the anticipatory anxiety, the PTSD symptoms and the triggers that slap you in the face when you least expect them linger around. The pandemic compounds all of this. Just as it does for so many. The difficulties that you have become magnified and it has a way of putting a choke hold on the supports and coping skills you would naturally utilize; it takes it’s tool. And Jeff…all he really wanted was a quiet space to rest and begin to gain back some energy, and instead he got a house with an energetic toddler and another work from home parent. As an introverted and post treatment recovering person, you can imagine how fun it was and has been at times.
The difference between battling treatment and then subsequently battling life post treatment is that people get it when you’re going through cancer treatment. There is an amount of empathy and understanding that unfortunately seems to be universal. It’s not that people purposely don’t understand what happens next, it’s just not as concrete. We did it; he did it. He completed his final treatment round and his subsequent MRI was “fantastic”. “NED- No Evidence of Disease”. The best news we could hope for. The hard part was done. Only it wasn’t. And in ways we are still figuring out.
We continue to remind ourselves how grateful we are, because in reality, even through the treatment, even within this pandemic, we are. So grateful. I’m grateful that we ended treatment in the pandemic versus going through treatment during this uneasy time. I’m grateful that each and every time I drove to Boston during the height of the winter I did not encounter any inclement weather. I’m grateful for the person who gave me a hotel room and the Boston based friends we don’t see very often but offered their homes to me without question. I’m grateful for the people who sent messages of hope and to check in even when I never responded. I’m grateful for our friend who installed railings in our house so Jeff could come home from rehab. I’m grateful for everyone who supported the benefit. I’m grateful for the amazing team of nurses and Doctors he has at MGH. I’m grateful that we got to MGH when we did to get the treatment he needed. I’m grateful I have been able to continue working through it all. I’m grateful that Jeff was able to begin working during treatment and now is working full time again. I’m grateful that Jeff does not have any physical impairments from surgery or treatment. I’m grateful that our son was able to experience stability and consistency through it all, and I’m grateful for so much more.
And we are learning, albeit daily, how to survive and even occasionally thrive in this next chapter of our lives. For all the hard moments there are the moments when you have such immense gratitude at what we have and what we’ve been given. When we get so sick of being on top of each other in the house or resentful of the continued isolation, I often pause and remember that we are all here together. All of us. On July 11th following the first surgery, I wasn’t so sure that would be the case. I believe wholeheartedly in our larger purpose on this earth. One that is divinely appointed. And the truth is, we are still working on piecing together the meaning of all of this and how it fits that larger purpose, but I am hopeful and eager to move from the treatment stressors, move from the pandemic stressors and begin to experience life and a sense of normalcy the way we have been longing to.