Information for CaregiversBeing a brain tumor patient isn't easy. From handling the flood of emotions and confusion upon diagnosis to preparing for chemotherapy and radiation treatment, living with a brain tumor can be an incredibly overwhelming experience for the caregiver as well as the patient.
Holding down the fort and organizing everyday life involves an army of caregivers. This can be an army of one, like a husband or wife, or an army of many, including family members, friends, etc. The role of the caregiver(s) is essentially to provide around-the-clock care for the brain tumor patient. It is an extremely difficult, yet crucial role that is often least understood or recognized.
Each and every caregiver offers unending support and enduring love, which is why providing them with crucial information is so important. Caregivers need to know how to deal with a loved one's diagnosis, how to get (and stay) organized, critical questions to ask at doctor's appointments, what to expect during treatment and last, but certainly not least, how to take care of themselves, too, while taking care of a brain tumor patient.
FOR THE CAREGIVER - TAKING CARE OF THE PATIENT
Two weeks after this diagnosis, Bryan was ready to start treatment. He would undergo a six-week course of radiation therapy along with chemotherapy pills. He would undergo short, 5-8 minute radiation therapy sessions Monday through Friday, while also taking chemotherapy pills every night before bed.
We met one of Cedars-Sinai's radiation oncologists, who explained everything about radiation step-by-step. First, Bryan needed to get fitted with his radiation mask. The mask is used to not only hold Bryan's head in place during treatment, but to ensure that the beams from the radiation machine hit the tumor and only the tumor. MRIs are taken several times during the treatment process to maintain pinpoint accuracy. The Varian Trilogy radiation machine and room at Cedars are state-of-the-art, complete with mood lighting and music. It definitely helped Bryan take the edge off during treatment.
While being fitted for the mask, Bryan lay down on a flat slab that simulated the one used by the radiation machine. Prior to being fitted, the mask essentially looked like a tennis racket. However, the technicians dipped the head of the "racket" into extremely hot water until it became pliable. They then stretched it over Bryan's face until it molded to form a perfect profile. The technicians then removed the mask and gave it time to harden. It took about ten minutes from start to finish. The technicians kept Bryan's mask, and brought it out every day for his radiation treatments.
Prior to starting treatment, our doctors' explained that Bryan would experience a worsening of symptoms as radiation progressed from week to week. This is because the area of the brain surrounding the tumor swells as a reaction to accumulated radiation exposure. Since Bryan's tumor is located in his brain stem, the majority of his symptoms happen to revolve around balance/dizziness, facial sensation and facial muscle movement. I wanted to track the change in this symptoms, so a few days per week I would do "touch tests" during which I would lightly touch parts of Bryan's face and check for sensation. I took notes so we would be able to share these changes with our doctor.
Bryan sailed through weeks one, two and three. He didn't notice any worsening of symptoms or increased fatigue (another common side effect of radiation). The chemotherapy pills did not make him nauseous or tired, but as our doctors' warned us, they did make him extraordinarily constipated. It was a minor, but very difficult side effect that did not let up easily. A twice-daily combination of prescription Lactulose and Sennakot-S seemed to do the trick.
Upon the completion of week three, Bryan started to notice a worsening in his physical symptoms. The slight numbness on the right side of his face and tongue became more profound, making it difficult for Bryan to speak clearly or chew certain foods. The left side of his body grew increasingly weak so through weeks five and six, simple tasks like walking and getting in and out of the car became harder and harder. Further, Bryan's dizziness worsened to the point where I took over all the driving responsibilities as well as helping him walk.
As the caregiver, it was unbelievably hard for me to watch my husband experience these symptoms. I couldn't control the worsening of the radiation effects, and though I knew it was "temporary," I also knew the symptoms could worsen for up to six months or a year after radiation had finished. I took over the responsibilities we once shared (and will hopefully soon share again), like driving, taking out the trash, emptying the dishwasher, helping fold laundry, etc.
Overall, the six weeks of treatment was a tough time for both Bryan and me. In my opinion, starting treatment signifies the beginning of an entirely "new normal." Life as you know it is radically changed and while it is temporary, it is also extraordinarily tough. It's very hard to watch a loved one go through intense cancer treatment. You want to help them but at the same time, are completely helpless. I helped Bryan by driving him to appointments, taking notes, asking lots of questions and making sure our house was in order. He had a craving for fruits and smoothies, so I stocked our fridge with fruits and juices that we could turn into smoothies any time of day or night. I rubbed lotion on his scalp three times a day to soothe the radiation burn. I organized his pills and called the doctor when we had questions. Perhaps most importantly, though, I helped Bryan listen to his body. Bryan is very proactive and always wanted to get up and help me do things, but the fact was sometimes his body didn't cooperate. By the end, he was simply exhausted. So I reinforced that not only was it okay to nap when he was tired, resting and recuperating was a priority.
Bryan is now seven weeks into his recovery period. I'll be honest, radiation was a cakewalk compared to the recovery period. The good news is that the radiation is continuing to work, but the bad news is that Bryan's swelling and symptoms continue to be severe. We see our doctor once a month and Bryan has MRIs every two months, but our neuro oncologist has reassured us that what we are experiencing is 100% normal. He says that after six months most patients experience a strong reduction in symptoms, and by the one year mark they hardly have any symptoms at all. That's exactly what we're hoping for, but in the meantime Bryan has started neurological rehabilitation. It helps with the loss of coordination in his left leg and arm, as well as his speech. The simple exercises that they have given us are already working, and just last week I noticed Bryan's speech started to clear up. I did another "touch test" on his face just the other day with a tiny feather, and he was able to feel the feather. This was a huge step, as one month ago he couldn't feel a trace of my fingertip.
The most important thing is that we have to constantly remind ourselves that it is a long road to recovery. While people had told me told get ready for an emotional and physical (and financial) roller coaster, I had no idea just how right they were. Things can literally change minute to minute, and until you experience it, it's almost impossible to comprehend. That said, Bryan and I continue to hold on tightly to the rails. Our doctors are optimistic so we continue to take it one day at a time. It's the best advice I can give. Be patient, take it one day at a time, and allow yourself your emotions. There's no quick fix to a brain tumor, just as there's no quick fix to the toll it takes on you emotionally. Knowing that this, too, will pass is what gets us through the day.
CAREGIVER – TAKING CARE OF YOURSELF
Caregivers, listen up. You must, must, must take care of yourself!
I know firsthand how hard it is to find time for yourself when you're so busy and concerned with taking care of your loved one. There are so many responsibilities that fall on your shoulders. Let's face it, whether you're a husband, wife, mother, father, brother, sister, or roommate, you're also a full-time, live-in nurse. At some point you may find yourself in charge of providing transportation, running errands, organizing doctor's appointments, paying the bills (medical and otherwise), doing the laundry, cooking, cleaning, etc. It's incredibly overwhelming at times and you need to make sure you maintain your patience, sanity and most importanT, your health.
But the one thing that you absolutely MUST prioritize is this: taking care of yourself. Because, simply put, you're no good to the person for whom you're caring if you're sick, injured, tired or burnt out. Here are ten tips and tricks I've found that have really helped me cope through this time.
Tip #1: Do not feel guilty about taking care of yourself. People often forget that you are living the same life as the brain tumor patient, 24 hours a day, 7 days a week. Taking time for yourself is imperative, even if you have to remind people that you're going through a tough time, too.
Tip #2: Accept help. This is a biggie. Whether it's someone bringing you dinner, unloading your dishwasher or simply coming over and sitting with your loved one while you take a walk, let people help. Don't be too proud because if the shoe was on the other foot, hopefully you would be first in line to help your friends and family.
Tip #3: Know when to say "no." Unfortunately, going through extraordinarily stressful situations (like having a brain tumor) tends to make people act fairly irrationally. People sometimes lose sight of the fact that the only thing that matters is what the "patient" wants. If you find yourself acting as a middle man, know that it's okay to stand up for what your loved one wants and needs during their treatment and recovery.
Tip #4: No matter how frustrated you get, do not, under any circumstances, take out your frustration on the patient. It is absolutely not their fault that they got a brain tumor. Remember, no one wants to get better and get back to a normal life more than they do.
Tip #5: Maintain contact with friends. Some friends will not understand or know how to respond to your situation. Find the ones that will, and reach out to them. Talk to them, share your feelings and frustrations and keep the lines of communication open.
Tip #6: Patience is mandatory. Don't push your loved one too much physically, especially during treatment. The fact that they look normal means it is easy to forget that they are undergoing an incredibly stressful and difficult time. If they are tired, let them rest. Rest times are often healing times.
Tip #7: Make sleep a priority. Try to get a good 8 hours per night.
Tip #8: Make sure to get out of the house on a regular basis. Have a night with friends, family, or simply take in a movie by yourself. Give yourself "alone" time to focus on renewing your spirit and energy, even if it's for thirty minutes.
Tip #9: Make friends with the valet parking people at the treatment center. They will remember you, get your car without asking for your valet ticket and will help your loved one into the car.
Tip #10: Recovery is often more difficult than the treatment. Make sure to find a neurological rehabilitation center (regular rehab centers will not take neurological patients) and get started with physical, occupational and speech therapy, if necessary. Also ask about over-stimulation, which has huge effects on a patient during the recovery period.