Caregivers! Are You Surviving or Thriving?

Surviving or thriving?  Caregivers can do BOTH.  Right now, I am often just surviving day to day, but I know I am thriving while being a caregiver to an active duty military member.

The military lifestyle prepares you for last minute changes and unexpected aspects; however, there was nothing that could prepare me for my husband’s cancer.  Unfortunately, cancer has surrounded me for several years.  In fact, when my husband, Nathan, deployed my first semester of graduate school, my mom and best friend were both diagnosed with breast cancer.  During that deployment, he was hospitalized due to sickness and I saw him sick one other time in his barracks.  Other than that, Nathan was a young, healthy Marine.

Prior to his cancer diagnosis, it took several months to even get a diagnosis because he was still, supposedly, a young, healthy Marine.  It took a lot of advocating to get him the diagnosis, and there has been a lot of advocating since.  Due to being an active duty Marine, he cannot just decide where he wants to go for treatment.  He is told where to go, and when to go, and he has to have approval not only from insurance, but from his command.  It took a couple of months to get a CT scan after multiple X-rays indicating pneumonia, then it took one month to get in with a pulmonary specialist after the concerning CT scan, and then even more time to be assigned an oncologist and begin chemotherapy.  This was because there was no oncologist at or near his military base.  We had to drive about 3.5 hours round trip for every appointment he had with a civilian oncologist.  Nathan had been saving his military vacation leave for us to take a summer cross country road trip before he got out of the military in the fall.  His diagnosis came the week we were to leave for this trip, and this was our first of many uprooted and canceled plans due to cancer.

At the time of diagnosis, my husband, Nathan, had been an active duty Marine for just over seven years.  After a lot of conversations, he was planning to get out of the military in a couple of months when his contract ended and we would move to another state to start a new chapter of our lives.  We were so excited for this next chapter with our child that had not even turned one year old yet.  We were looking forward to closing the military chapter; however, with the cancer diagnosis the week our daughter would turn one, we realized that we would not be able to financially survive and secure our own health insurance with his cancer diagnosis.  Nathan needed to stay active duty.

After a lot of advocating and prayer, Nathan’s contract was finally officially extended for six more months the week that it was set to expire.  After another hiccup in medical care, his contract would be extended six more months, he finally got assigned to the Wounded Warrior Battalion, and then COVID hit.  Due to the move, we switched hospitals from one state to the state we were now living in.  As a result of the waiting on military approval for the orders and the move, Nathan went six months without treatment.  I advocated hard for a new hospital we would switch to – only to find out that was not a good fit for our needs.  It seemed like everything was falling apart when we got the update that the PET scan results were not what we had hoped for — the chemotherapy and radiation did not kill the disease.

What was next…

After a lot of prayers, Facebook posts, research, and conversations with friends  and family, I decided as Nathan’s caregiver that we needed to go to MD Anderson, and as fast as we could.  The moment that I made that decision, I began looking at flights, and mentally processing how we could make this work after just moving to a new state.  I had it all planned out in my mind to leave that evening down to the time we would have to leave our house to make it to the next flight to Houston.  Oh, but wait…I forgot one thing in my plan.  Since my husband’s life belongs to the military, we had to have their approval.  We waited, and we waited, and I (impatiently) waited even more while trying to make plans as each day passed.  If we were just civilians, we would have already been in Houston.  Once we got the approval, we started the drive, only for Nathan to be called back to base to sign more paperwork.  I will spare the details of that as it did not go according to my plan.  Nonetheless, Nathan finally got approval from his command to go to MD Anderson, and within 24 hours, we had left our dogs in North Carolina with my parents, and Nathan’s grandparents picked us up with their RV, and we made the journey to Houston, Texas.

A caregiver’s identity…

For the first year after my husband’s cancer diagnosis, the only hat I truly poured into was the “caregiver” hat.  It was so easy to put my hats of friend, Christian, traveler, and professional on the hat rack and only take them down occasionally.  Of course I was still doing these things, but I was just going through the motions and not giving these hats proper storage in my heart.  Instead, I constantly poured into my husband’s cancer diagnosis and treatment and doing everything that I could do to make sure his appointments were made, he took his medicine, recognized his symptoms, followed all doctors’ orders, and advocated for his health and for him to transition to the Wounded Warrior Battalion.

During this year, I was also a mother to a toddler, a spouse, a Christian, a friend, a traveler, and full-time employee.  It took me an entire YEAR to realize that I can pour into several aspects of my life instead of putting them on the backburner because of a tough day or hard season in my life.  If there is one thing that anyone can take away from this, I hope it’s that caregivers, and anyone impacted by cancer, can recognize their inner strength and pour into themselves because cancer does not = END.  You do not have to end your identity to become a caregiver.  You can, and absolutely should, end or pause any hats at any time if that is what you want, and that is what works for your family.  One thing I have learned, though, that I wish someone would have told me before now, is that caregiving does not have to be your only identity.

What is important to YOU…

Take a few minutes right now to think of the five most important things to you.  For me, being the best mom and spouse that I can be is the most important to me.  Being a hard worker/employee is important to me.  Traveling is also important to me.  I also never want to put my faith on the backburner.  Once I started realizing that all of these things were important to me, and played a role in my happiness, I learned that I have to give these things attention in order to be as happy as possible during this dark season of life.    I finally made a decision and went to visit my friend in Boston, Massachusetts, and had an amazing stress-free two day get away.  It was so great that we started planning another trip.  This friend that lives in Vermont, and our friend that lives in Norway, and myself had flights to visit New York City together.  It ended up being the week that COVID gained national attention, and borders were closed.  Our flights and hotels had to be canceled, and I was crushed.  I mean, I was devastated.  I needed this time away from the caregiving responsibility and craved happy memories with my friends.  Little did I know this would be the first of many times that COVID interrupted my life.  Remember my friend that is a breast cancer survivor?  Because of COVID, I was also unable to go to her wedding and fulfill my bridesmaid duties.  Again, I was devastated.  This was something else the military lifestyle had prepared me for because there have been many events that I wanted to go to but was unable to do so because of my husband’s active duty military status.  Although there have been many canceled plans in this season, I still give my wanderlust spirit travel ideas for after cancer and COVID, and it often gives me the strength to look forward.

Advice for caregivers…

I have always been a very impatient person, so this is something that I have learned along the way.  If you find yourself becoming agitated or impatient, I encourage you to take advantage of the waiting times.  Instead of sulking while waiting for the next appointment, next scan, or the next chapter, write down your thoughts and feelings – even if it is just in one-word phrases.  Journaling does not have to be an elaborate one-page document.  One thing that I started before Nathan’s diagnosis was a five year question a day book for mothers.  I have written in this every day and will continue this.  It is so eye opening and inspiring to see my current answers and my previous year/s answers.  Other things that have been helpful for us is grocery deliveries and meal deliveries, especially during these times of COVID.  Lastly, plug into as many programs as you can.  This may look different for each family and diagnosis.  For example, the one constant through our journey has been the Semper Fi Fund, which is a nonprofit organization that is military affiliated, but not directly linked to the military.  I have also thoroughly enjoyed attending support groups, being in Facebook pages, and attending journaling classes.  Most importantly, please tell yourself right now that even if you feel like you are barely surviving the day to day, you are also thriving into a much stronger person.

All of the posts written for Elephants and Tea are contributed by patients, survivors, caregivers and loved ones dealing with cancer.  If you have a story or experience you would like to share with the cancer community we would love to hear from you!  Please submit your idea at https://elephantsandtea.org/contact/submissions/.