Navigating the Medical System in a Serious Health Crisis
Editor’s Note: This is an excerpt from Paint Your Hair Blue: A Celebration of Life with Hope for Tomorrow in the Face of Pediatric Cancer by Sue Matthews with her sister Andrea Cohane. It’s a memoir of Sue’s and her family’s journey after her daughter Taylor was diagnosed with cancer at the age of 11. Taylor died when she was 16. This excerpt is reprinted with permission from the author.
In the course of Taylor’s cancer journey, we gathered many “nuggets of gold,” or anecdotal lessons, through the trial and error of treatment. If you or a loved one is going through a long illness, you may find some of these tips helpful. Naturally, I am writing from the perspective of a parent of a cancer patient; however, many of these tips can be applied to a variety of situations and illnesses.
The information provided is not a substitute for medical or professional care, and you should not use this information in place of a visit, consultation, or the advice of your physician or other healthcare provider. It is based on my experience and should be used for educational purposes only.
- Send your pathology to other hospitals to confirm diagnosis and to analyze the tumor. Your hospital will send the slides for you for a nominal fee.
- Get a second, third, and even fourth opinion! Bring copies of your scans to the doctor providing the second opinion or mail in advance if a second opinion is discussed over the phone. Do not count on your hospital to send it.
- Research your disease. Many doctors will warn you that much of the information on the web is inaccurate, contradictory, generalized, and overwhelming. If you can put the fear factor aside, the Internet can be very helpful in explaining different treatment options, identifying current research, and citing the names of doctors and institutions where valuable support can be found.
- Ask your doctors to collaborate with the doctors at other institutions, which will give you the best treatment options available nationally or globally.
- Many medical terms may be foreign. Continue to ask if you don’t understand a term used or understand what the doctors are saying. No question is a bad one!
- Have your tumor analyzed as soon as possible by Precision Medicine. Precision Medicine uses genomic profiling to make personalized, genetically informed treatment recommendations and assist with clinical decision making, culminating in better outcomes for patients. When the biopsy is performed, a sample can be taken for this purpose.
- You will receive your protocol (treatment plan) and a timeline. The timeline most likely will change based upon low blood counts. Have a doctor or nurse explain in detail what the numbers mean in a complete blood count (CBC) so you can watch your numbers and spot trends.
- If you do not understand your protocol, ask if there is a summary of the protocol available for your review.
- You will most likely need a central line under your skin (a Broviac or a port) because chemotherapy is very difficult to administer through an IV, and over time, your veins will not hold up. Determine with your doctors whether a Broviac or a port is most suitable. If it is for your child, do consider his or her choice.
- Ask about immunology treatment options.
- Consider harvesting your stem cells. They can be used later to rescue your immune system. Sometimes your immune system can stay low for an extended period of time, leaving you at high risk for infection. Infusion of your own stem cells will bring back your immune system quickly. When harvesting, make sure your stem cells are frozen in small packages so you can use them several times.
- Insist on getting results from scans immediately. Some hospitals will tell you results may take days. Don’t accept that answer. Every moment waiting for test results is grueling.
- When booking scans, do not accept a scan appointment later in the day. You cannot eat before a scan and will be very uncomfortable.
- Do not take any narcotics before your scans, because narcotics on an empty stomach can cause extreme nausea.
- Get a copy of every radiology report and read it in depth. Don’t let your doctors summarize it. Sometimes they tell you only what they want you to hear.
- Get a copy of the disc from every scan (MRI, PET, CT, bone scan, X-ray, ECHO, EKG, etc.).
- Check all medications and chemotherapy you receive. Anyone can dispense wrong medications by accident. Trust your doctors, but check them every step of the way—it can only help!
- Both at home and in the hospital, keep a log of your medications and the time they were dispensed. Phone apps can help you with this.
- Research your chemotherapy and medications. The doctors will require you to sign reams of paper that likely will explain frightening side effects. You will feel more comfortable if you understand beforehand the medication/chemotherapy you are getting.
- If anything seems wrong, call your nurse and/or your doctor immediately. Trust your gut!
- Whether in the ICU or inpatient, pain management doctors will decide what pain medications to administer. Do not accept what they say if your pain is not manageable. You will quickly know what works best for you.
- Check the results of all of your blood counts. Ask for and maintain copies of everything, and if anything seems unusual, bring it to your medical professional’s attention.
- A side effect of chemotherapy and pain medications is constipation. Address the problem before it happens.
- Get an Insuflon, which is a small access point put into your leg that needs to be changed about once a week. This way, you can give yourself a shot at home, and it won’t be painful. When inserting an Insuflon or accessing a port ask for Emla cream (numbing cream).
- Seek alternative treatments, such as acupuncture and massage, to alleviate nausea and pain.
- If you overdose on any of your medications, even if you seem to be fine, do contact your physician immediately.
Call your doctor immediately if you are experiencing anything unusual. No question is a bad one.
Emergency Room Visits
- Before leaving for the ER, call your on-call doctor and advise them of the problem. Make sure that your doctor calls the ER to tell them you are en route and that because you have cancer you cannot be subjected to other sick people in the waiting room.
- Upon arrival, insist upon immediate attention.
- Seek second opinions and different surgical options.
- Speak to your personal anesthesiologist on the day of your surgery. Don’t count on your pre-op anesthesiologist to pass along information.
- If you have an allergy, make sure you are wearing a red wristband and discuss the allergy with the anesthesiologist.
- Many people become nauseated after general anesthesia. Ask for an intravenous infusion of anti-nausea drugs before you wake up.
- If your child is the one receiving surgery, insist on going into the operating room until he or she receives anesthesia.
- Ask for updates during surgery to alleviate stress, especially if surgery exceeds the amount of time you expected (which often happens).
- Insist on being in the recovery room when your child or loved one wakes up. It is very frightening for your child to wake up without a loved one nearby.
Family and Friends
- Family and friends want to help, but often do not know what to do except send gifts and meals. Let them know these are helpful! A great gift you can ask for is for them to give blood and platelets and reserve them for your child. Never accept “pooled platelets” (platelets from several donors), which can cause an allergic reaction. You want platelets from a single donor.
- Family and friends can be apprehensive to pry but often want an update. A popular and unobtrusive way to provide this is for you to write a blog. Not only is it cathartic to do so, it is also a relatively easy way for you to control the information available about your situation. It also removes the pressure of having to return calls and emails. You can easily create a blog through the website caringbridge.org.
- Ask your family and friends to visit as often as feasible.
The most important thing you can do in this journey is to trust your gut instincts. Doctors can sometimes make you feel like your questions are insignificant, stupid, or a waste of time. Do not blindly trust anyone. That is not to say you should distrust your physicians; on the contrary, in many ways, they are your lifelines. However, they are just as human as anyone else, and you have a right to advocate for yourself or your loved one at all costs. Do what is right for your family and remember every day is a gift. Enjoy it! Cancer is not a death sentence. In many ways, it provides an eye-opening opportunity to live your life to the fullest. That’s what Taylor did. That’s what she taught me, and that is what she would want you to know.
Paint Your Hair Blue is available on Amazon.
It’s a moving and powerful memoir.