When I was diagnosed with cancer last year, there were so many things I wasn’t prepared for. One of them was the amount of questions I would get about my diagnosis, treatment, plans and even my insurance. Here are some of the most frequently asked questions and my responses. Everyone’s journey is different and some people choose to share, some overshare, and some don’t want to discuss it at all. I’m an open book, and I try to educate others as much as I can. Shine on!
These are the top 12 questions I get as a military spouse going through chemotherapy:
How long were your infusions?
My chemo infusions from start to finish would take about 5 to 6 hours.
How many chemotherapy infusions did you receive, and what were they?
16 total: Four rounds every other week of AC – doxorubicin hydrochloride (Adriamycin) and cyclophosphamide.
12 rounds weekly of Paxlitaxel aka Taxol.
How has dealing with Tricare been?
It started off rocky, and that was 100% on me. I really did not understand how Tricare worked. I have Tricare Prime Remote, so even though I have six specialty doctors on my cancer team, all my referrals still have to come from my PCP. Picking up the phone, calling Tricare, and asking questions have saved me so much time and stress. I have downloaded their App and also use their online tool to follow up and keep track of referrals. Now 10 months into a life-threatening diagnosis learning more and working with Tricare I am trying to help other military families understand the process a little better.
What were your favorite things to eat while going through chemo?
Eating during my four rounds of AC was rough. I would get my AC chemo drug on Thursdays and did not feel hungry until Sunday. When Sunday rolled around, I craved a hamburger or spaghetti (one thing I had not eaten since college!) But I had to eat something, even if it was just a cracker, before taking my nausea medicine b/c if I didn’t, I would feel more nauseous.
When I started Taxol, my hemoglobin levels began to fall, and my liver levels began to get very high. So, I increased my brussels sprouts, broccoli, and beets diet.
Remember, before you begin anything or read anything here, you should talk to your medical care team before starting.
With your family being a military family and living remotely away from support, how were people able to support you during this time?
I learned really quickly just how amazing community can be, and distance can’t keep people from helping. When my incredible friends at the Inspire Up Foundation learned that I would be doing 16 rounds of chemo and Jeremy being active duty, they started a meal train through Give In Kind. This was amazing and seriously a lifesaver for me and our family. People from far away and local were able to sign up to either bring us meals or send us a gift card to purchase meals from local resturants ourselves. With one simple act of kindness and a link, it helped our family out more than people knew. It took one less stress off my plate so I could focus on healing and spending what energy I had some days with my children.
How did your kids handle you going through chemo?
Like rockstars!! Between their dad being underway with the Coast Guard and me getting chemo, they were amazing! It was essential for me to still be able to “mom” during this time. Try to keep things as “normal” as possible. I would drop them off at school and then head to treatment. Because my treatment would take so long, they would walk to a friend’s house after school, and depending on Jeremy’s schedule he or a friend would bring them home because I could not drive. I was really upfront with them about not feeling good, they could see it, too. They even helped out more around the house. Our weekends slowed down a lot with watching movies together (yes, I could and would fall asleep) or building with Legos.
Did you drink alcohol while doing chemo?
NOPE! In fact I have not had any alcohol in 264 days!
Why is a metal cup like a Stanley Cup not ideal for Chemotherapy infusions?
For me, my chemotherapy drugs made my mouth taste like metal! I learned this after my first sip out of my metal cup on my first chemo infusion, it was like drinking metal water. I brought a plastic water bottle with me to chemo. Even without drinking or using metal utensils, by the last three weeks of Taxol, my mouth still tasted like metal for two to three days after my chemo infusion.
The Red Devil drug is so red. Did it make your pee red?
Yep!
What are the hardest days after chemo?
The most challenging day for me after chemo was Friday night. My pre-med drugs would wear off, and for my four AC rounds, I was given a Neulasta® pod to wear that would inject medicine to stimulate my bone marrow to make white blood cells. All of this combined on Friday night was a lot. I was really thankful for the nausea meds.
Did you work during chemotherapy?
Yes. I am fortunate to work for an amazing nonprofit that understands the medical needs of military families.
Did your husband still have to go to work, and did he get underway?
Yes. The Coast Guard and Jeremy’s command have been awesome, but there were times when Jeremy did have to get underway while I was going through chemotherapy. When this happened, because my chemo infusion dates were already planned out with my care team, my mom, sister, and sister-in-law were able to fly in and help.