Barbados Life: Life as a Cancer Spouse

 In June of 2019 my husband found out that he has non-Hodgkins Follicular Lymphoma. A type of blood cancer that accounts for only 4% of the cancers in the US. There is no cure.

I, on the other hand, do not have cancer. I do not have any diseases that I am aware of. I have some weird gluten intolerance but that is about it. But I felt the need to write about dealing with cancer as a spouse and moving to a new country during a pandemic and how that has impacted me emotionally. My hope is that other spouses/partners/family members who have someone close in the same boat may find some connection with this post. 

The data is not conclusive on whether or not those with NHL are more susceptible to the corona virus. Because it's a blood cancer and because it can impact your immune system, there are theories on what could happen but not sure I want to test that out and become of the first data point if it there are negative impacts.

The cancer attacks the lymph nodes and for my husband it had accumulated in the node in his neck. He noticed one day while working that he had a knot in his shoulder that just wouldn't go away so he had it checked out. He learned he had follicular lymphoma, which is one of the few different types but it is not aggressive and slow growing. He decided to have radiation treatment done that fall and by November 2019 the lump was gone. At this point he was put in to the official 'watch and wait' mode which is common with this type of cancer.

Unlike other cancers, lymphoma is a bit strange as you could be in stage 4 but as long as it is not transformed into the aggressive kind or the b-cell kind, people can live many years with the cancer. The aggressive kind is identified in the early stages with night sweats, fever, and severe weight loss. 

He does not have any of these symptoms and no side effects or pain and most of his time now is being mindful about his life style and getting regular checkups.

I can only imagine how it must be for him to live with such a thing that he doesn't know when it could become aggressive. However, I thought it therapeutic to share how it feels to be by his side as he deals with all of this.

Because as a partner in this disease, you aim to be supportive, strong, and resilient. I am sure he's stressing enough he doesn't need his spouse falling apart as well is my theory. 

But I have feelings too- and they are of worry, and stress and concern. I wake up a lot during the night and at least three times a week I will reach over to check his forehead that he isn't sweating or running a fever. 

Every 6 months he has to get a scan done and from the moment he gets the procedure done to the moment we have the review with the doctor, I say quiet prayers to any deity who will listen that if they can just keep my husband around just a little bit longer. 

Couple this already stressful ordeal with a pandemic and my nervous system is just really really raw at this point. He was due for his scan when we arrived in Barbados and after getting his orders transferred to a local doctor we found there were 3 available CT scan facilities on the island. However, 2 out of the 3 were not working. I am not sure if it was a part, or a software update but I felt like in the time we have waited for them to be repaired, I feel confident I could have gone down there myself, hacked the systems for an update or YouTubed "how to repair a CT scanner" and got it done.

The third working one was at the hospital. The hospital, however, was sort of a foreboding entity with the COVID situation so we opted to avoid that and wait out the repairs for the private CTs. Right about that time, the country entered lockdown, and only essential businesses were running. CT places are considered essential, but the parts that were coming into country and the repair people were not necessarily considered so,  so many things grinded to a halt. 

The waiting went from weeks to months and finally husband decided that a trip back to the US to retrieve one of the older girls, coupled with a business trip would be a perfect opportunity to get a scan done with his regular doctor. As luck would have it, the day after he leaves, the local CT facility called to say the scanner had been repaired and they just so happened to have an opening that week. sigh. I politely declined.

So when my husband who has a cancer that Could Possibly make him more susceptible to a virus that is plaguing the world, decided to travel,  I had some reservations. And the fact that he was traveling From a country that only had as many active cases as a US high school senior class,  Into a country that had seen a death toll equal to the country he was leaving, just made me a wee bit stressed.

But as any good over-planning wife would do, I stocked up his laptop bag with N95 masks, hand sanitizer, and disinfectant wipes that would last his entire trip. I even pre-ordered more N95 masks to be delivered to where he was staying on his final leg of the trip so he would have them for the return.

He had his scan and our watchful point was a few spots in his abdomen that showed up from last year. However, this time the scan came back with a recommendation to have an MRI done on the liver. Again, I am not there, therefore I can't put my healing hands on him so surely this can't be good. 

The review of his original scan goes well and the doctor agrees to have an MRI but feels it will all be ok. Despite his calming attempts, I fret for the next few nights.  The scan winds up showing the spots were benign and just lesions/cysts that are typical at his age and with lymphoma. It was not liver cancer or any of the other horrible things that crossed my mind during my internet search.

I know it sounds ridiculous but I feel like since he has been diagnosed, I am hanging on more desperately when we have to be apart. Especially this trip. It was before a scan and usually we are together for those. So to have to deal with it virtually and not be by his side, in a pandemic, was just more than I was really prepared for. 

So far, there has not been a lot of funny in this post, I realize that. But I am hopeful that those who know my obsessive behavior can relate and see the humor in how quickly I can get worked up about the simplest things. I also hope that there's comfort for others who have been a partner in all of this.

When your partner has cancer, you don't feel allowed to have any feelings. Except support and strength. You can have the supportive ones but you can't have the vulnerable ones. You are not the one dying, or physically suffering. But I will say, to watch spouses on the forums who lose their loved ones, to watch them grieve and to feel this ominous feeling that some day you will have to be there too, is just heart wrenching some days. 

I opt most days to do whatever I can to help as that seems to help manage the pain I feel. Chasing down the CT scan people had become my new task and sadly I am very good at nagging people. I am not proud of it. Now that the scan is done, I will have to find a new item to obsess over. I was going to chart all of his data but the stupid system that keeps all of his records is super advanced and already has a table for that. pfft. Maybe I will build a dashboard then and plot some trend analysis.

He is home now. We are waiting out the quarantine but I am relieved that today he still has the non-aggressive type of cancer that doesn't carry any symptoms. I don't take for granted any more our time together. In true Zen nature I am trying to live every moment with him in that exact moment to enjoy what we have today.

Last night we watched the sunset and marveled at all the colors. We have watched more sunsets while we have been here than probably in our entire time together. lol Barbados has some of the most amazing sunsets you will ever see. No matter what happens I know I have been able to share these with him.