Episode 119: Things They Should Have Told You About Caregiving: Part 1

Listen on Apple Podcasts Listen on Spotify

Download a free version of Caregiving Confessions Here!

Transcript

Welcome to The Things They Should Have Told You summer series where I take the 4 most important episodes for caregivers to listen to no matter how long they’ve been a caregiver. So let’s start off with my origin story. I truly believe all caregivers are super heroes and with all super heroes we feel more connected to them when we learn their origin stories. 

Let’s start at the beginning today.

It’s so hard for me to talk about caregiving without talking about my husband. That’s a normal side effect of being a caregiver. It’s all about the other person, how they feel, how they are doing. I think there are always two sides of an origin story and for this one time I’ll tell you about my husband so you can get to know who I care for.

Start at the beginning

When my husband found out he had cancer we were living in WI south of Milwaukee. We’d been married for 20 years and had a 10 year old daughter. He and I met each other in high school and have been together ever since. We grew up together and to this day we like each other as much as we love each other - and we love each other a lot. 

Pre caregiver life

Life before cancer was good. My daughter was at such a fun age. My husband’s work life was exciting for him and I enjoyed working part time as a yoga teacher and personal trainer at a gym.

It was right around Christmas when my husband didn’t feel well and found a lump on his neck. This wasn’t the first time the lump had showed up. About six months before he developed a large goiter and was given steroids to treat it. A biopsy was done and it was suspicious but inconclusive. I always looked back at that and wonder why I didn’t go with him to those appointments. Why didn’t it feel important for me to go? If I went would I have asked questions or understood information differently than him? It’s always easy to second guess yourself but never really helpful is it? Either way, the goiter went away that first time and life continued.

The second time it showed up my husband went to a walk in clinic because it was a weekend. The doctors there gave him a prescription for steroids as well. When he came back and told me I got angry for some reason and told him he needed to go see his Dr at work.

The doctor at work realized this was alarming and sent him for a biopsy and an appointment with an endocrinologist.

 A month later it was confirmed - it was cancer!

Getting the news

I wasn’t with him when he got the phone call. I don’t ever let myself imagine what that was like - to get a phone call and have to experience that alone. He called to give me the news and all I can remember is questions exploding from me.

Are they sure?

What is thyroglobulin?

What do we do next?

The more I asked the less he knew. I don’t remember if I asked if he was ok or if I told him I would help him through everything.

 Wow I’m hearing a lot of regret right now…..

After that I never let him go to an appointment alone, and there have been so many of them!

Creating the team

We found an oncologist and surgeon in Milwaukee and he had his first surgery that February. Just two months after being diagnosed. 

When he had his thyroid removed I flew family in to help while I stayed with him at the hospital. It was a long week of sleeping on hospital furniture while staying with him 24 hours a day. His surgery was longer than they expected as was his recovery in the hospital. 

 Just the beginning

Getting him home was just the beginning of recovery. The cancer had spread and they could not remove everything during the first surgery. So since that first surgery in 2013 we have been watching things until they were big enough to remove and then picking the cancer out one piece at a time. While trying to suppress what is left with high levels of thyroid hormone. 

 Suppressing thyroid cancer by taking large amount of thyroid hormone isn’t easy for anyone. However, that is what he has had to do to keep the tumors, we have been watching, from growing. It’s been working so far. 

He always wants the cancer removed when they find it. He’d rather go through surgery after surgery to remove it as it shows up. However, the tumors he has now are in very difficult places to get to and so we wait. 

My husband has thyroid cancer… I care for him…Living with cancer isn’t easy but it’s better than the alternative.

This series will be continued into the August issue of Caregiving Confessions the digital magazine for caregivers. If you haven’t subscribed find all the information at loveyourcaregivinglife.com/confessions. The August issue will expand on the episodes you will hear this month and will include a live session with me and other caregivers to answer your questions and connect. Join us at loveyourcaregivinglife.com/confessions.

Thank you for listening.