We were in the hospital room when the nurse came in holding a bag of clear liquid. She casually mentioned that she was giving my husband Rich lactated ringer. As she started to wind the tubing through the pump I asked, “What is lactated ringer?” She stopped and just looked at the bag. I continued, “What makes it different than just saline?”
“Well, it has more … It can … Well, the blood … COME ON NURSING SCHOOL, don’t fail me now!"
We both laughed. She sheepishly said that they usually give lactated ringer because the body tends to absorb it better and retain it better for rehydration. But she couldn’t remember exactly why. I assured her that Google would probably give me all the details I needed, but I was satisfied with that answer for now.
As she left, I thought about how that whole exchange could have gone a lot worse. She could have gotten defensive. I could have gotten indignant. We both could have made a lot of assumptions, particularly under stress of the millionth day in that hospital. But we worked it out just fine. The key was remembering that we’re both on Team Stryker and that everyone is human.
She doesn’t come into my office and quiz me about database acronyms (acronyms are my nemesis - I can never remember what they stand for). But I have a right to know what’s going into my husband’s body as much as my own clients have a right to know what we’re doing to their servers. We all just need to be patient. (HA, get it? I’m here all week.)
Rich was diagnosed with an extremely rare form of appendix cancer in the summer of 2012. As one of our favorite oncologists says, “No one treats what you have because no one has what you have.” Fewer than 1000 Americans a year are diagnosed. What we discovered from this is that the medical experts did not necessarily have clear answers or solutions.
That can be very unsettling to a lot of people. Doctors are supposed to know everything. But I personally would much rather have a doctor be professional and tell us if he or she doesn’t know what will happen rather than feign expertise. We don’t have the luxury of humoring each other. Lives are at stake.
Use technology
Facebook is a life saver. We have a Facebook group called Team Stryker with over 650 members. It is the easiest way for me to keep everyone posted on how Rich is doing, as well as receive encouragement and humor for those who love us dearly. If too much time goes by without an update, our friends gently poke us for news. Virtual hugs really are helpful. We’ve also used a care calendar to help schedule meals, chores and other helpers.
I’ve taken a million iPhone pictures of my husband’s healing incision and sent them to nurses, surgeons, close friends, and anyone else that needed them. I even got both of our surgeons to take pictures of Rich’s intestines during surgery and send them to me. Those pictures were later very helpful in explaining things to a new doctor. Never go scrolling through the camera roll on my phone. You never know what you’ll find.
Never alone
We decided to have a very invasive surgery in November of 2012. While we live in coastal Virginia, we had to drive to Baltimore for the surgery and recovery. It took an enormous team of friends and family to help us through the few weeks we were all there. Because we brought our three-year-old with us, we needed care-givers through the day and other friends to stay with Rich overnight. I was adamant that Rich not be left alone in the hospital ever. Before the surgery, Rich thought it was foolish to have a “sitter” with him overnight. He was a grown ass man. But he was also a grown ass man with rare cancer who had just had his entire abdomen cut open. It was a life saver to have someone with him all day and night. One friend did everything in his power to help cure the hiccups Rich got post-surgery. Another friend texted me and attached herself to Rich when his heart suddenly had tachycardia and he was raced off to the ICU amongst a clown car of doctors that came out of nowhere. That was certainly not something I wanted to find out about the next morning.
Write it down
Shortly after Rich’s first surgery, a nurse walked into the room. She was mostly talking to herself as she asked, “Did he get an EKG?” Rich’s dad looked in our precious spiral bound notebook and said, “It’s not in the notebook. It didn’t happen.” The day before surgery we had been given the advice to keep a notebook of everything that happened in the hospital. Two years, two surgeries, two drug trials and countless medical episodes later we still have that notebook. The notebook helped with continuity when so many different people were staying with Rich. It also helped the nurses because while they could look up Rich’s previous blood pressure in the computer, our notebook was much faster. The nurses were great about spelling medications for us and even writing notes in it themselves if we had all dozed off in the room.
We also found the notebook to be helpful to Rich to see his progress. A patient is always the last to believe that he is getting better, but I could refer to the notebook and say that his fistula output had gone down, his heart rate had improved, he was walking within two days after surgery, and it was normal to feel this bad. While the notebook was primarily for use in the hospital, we used it once we got home as well to note how quickly Rich was able to return to all his normal activities like eating solid foods, doing exercise, and enjoying intimate moments (these are all critical milestones).
Never assume malice, but insist on being heard
When Rich was out of surgery and in a clinical trial, he was given an experimental pill to take every day. One week the pill he got was a different color, but he didn’t think much of it. That same week he developed horrible headaches. They were relentless and intense, which lead to everyone in the household being miserable. We discovered just before our next doctor visit that the pharmacist had given out the wrong dosage of pills. The mystery headaches were explained, but we were left feeling hurt and vulnerable.
We went to our next visit and I felt compelled to say something to our oncologist. Rich didn’t want to make a big fuss, but I wanted to make sure everyone was aware of the hell we had all been through. I explained to the doctor that we know it was a mistake and I’m sure it is being handled. But I wanted to make sure she knew that it really upset us. We only have a few cancer centers we can go to for this extremely rare situation. As I told her, it’s not like we got bad service at a restaurant and will just never go back. We have nowhere else to go, and that lack of choice is all the more upsetting if we feel like we’re not being well cared for.
The doctor was extremely empathetic. She reiterated that the entire cancer center was in an uproar over this screw up. She was mortified that Rich had gotten the wrong pills and was grateful no further damage was done. I was reassured that she was still on our team and we were all happy in the end.
Medical people are not perfect. They’re not trying to make your illness harder. Never assume they are out to get you. But make sure that your perspective is understood. A little compassion on your part goes a long way to making everyone’s day easier.
Create a team
We brought food to all our nurses. Not just chocolates, but protein bars and yogurts. We brought hand lotion to keep at the nurse station. We made t-shirts for all our friends on Team Stryker and gave one to our oncologist. Everyone wants to be part of something greater than themselves. Medical professionals don’t take on those jobs because of the great hours and easy workload. So saying thank you and being genuine with them will make you one of their favorite patients. Remember to say “please” when you push the call button. Yes, you just had surgery and feel like you’ve been hit by a truck but you still have to be civil. It’s what keeps society knitted together.
Accept help
Don’t be the hero. Accepting help from people can be one of the hardest things for a patient, particularly men. We have found, though, that letting our friends and family help us is a way for them to express their love. It’s the same you would want to do for someone else. Let the doctors move your appointments to days that work for you. Let your friends mow your lawn. Accept meals that are brought to your house. Let your nurses bring you extra pillows for your loved ones that are staying with you. It’s how they show they care.
Rich has had two surgeries, one in November 2012 and the second in June 2014. He’s on his second clinical trial that requires flights to Nashville for his medication. He just recovered from a fistula in his small bowels that kept him from eating anything for six excruciatingly long months. But we are doing really well right now. Rich is eating three meals a day. He’s going to work. I’m pestering him to start exercising regularly and get back in shape.
Rich has said that he doesn’t need t-shirts or Facebook groups. He doesn’t need fund raisers or a lot of hoopla. He just needs me. I smile and tell him that I need all that in order to be there for him. We have gathered up a huge number of members on Team Stryker. Surgeons and oncologists in four states. Home care nurses. Baby sitters. Neighbors. Email support groups. And a million friends. It really does take a village. We look forward all the ways we can help others in the same way we’ve been cared for so tenderly.
Genie Stryker lives in Norfolk, Virginia with her husband Rich, five-year-old Ian, and way too many dogs and cats. She writes about her feelings at www.InABottle.org.
Click here to see our take on the steps to patient empowerment, or download them below!
