It Takes a Village

Most have heard the saying, “It takes a village to raise a child”. While I wholeheartedly agree with this, I also feel that this applies to healthcare and needing a village to heal patients as I have directly benefited from the efforts of my “village”, or per the ABTA, my commYOUnity. It is probable that I would have had similar success as I do now with surgery and therapy alone, but the quality of my life would have significantly lacked in comparison if I did not have the emotional and personal support I had and still do.  To have traveled this journey alone seems unimaginable.

It wasn’t until December of last year that I felt well enough to start exploring avenues to get involved and possibly become a mentor or “buddy”. My desire to do so was inspired by my own struggles as I found myself often frustrated with the lack of clarity surrounding my diagnosis and then with recovering from disability. I would ask what I thought to be simple or general questions only to receive the run around. Was I the first brain tumor patient these individuals have ever encountered? Am I the first disabled person asking for information on the best course to be independent again? Driving was a huge goal I wanted to accomplish and for months I sought information or assistance but found myself directed from one person to another.  

In a Chicago State of Mind. 

This passion also led me to the American Brain Tumor Association (ABTA) and the Connecticut Brain Tumor Alliance (CTBTA) . I was fortunate that through my efforts to advocate with ABTA, I was invited to Chicago where ABTA headquarters is located for the annual Patient and Family/Caregiver Conference at the end of July. 

Member of ABTA CommYOUnity Network. A staircase full of inspiration. 

At the conference, I learned about current treatment methods and innovation in the areas of neurosurgical and neuroncological medicine.   I remember hearing stories of other survivors and all I kept reveling in was, “they get it”. It was at that moment that I felt my struggles and concerns were validated by this amazing group of individuals who each struggled with and continuously persevere against a diagnosis that has wreaked just a little bit of havoc in their lives. I had never met any of them before then and yet I felt like I could relate to them and that we shared this bond through our experience.  

This theme of comradery and commYOUnity was also relevant in the distinguished panel of speakers at the event including Drs. Susan Chang, Mark Johnson, Erik Sulman, and Joon H. Uhm to name a few. During one of the case review panel board seminars, whilst discussing the benefit in patient care with a tumor board vs a single MD approach, Dr. Lorenzo Munoz, a neurosurgeon at Rush University Medical Center, stated “I’m a smart guy, but I’m not smarter than all of us collectively”. It was a statement which was appreciated and applauded by many attendees who have personally benefited from a collaborative approach.

Later on, I was afforded the opportunity of attending a lecture given by APRN Kathy Lupica on “Quality of Life: Managing your Symptoms & Finding Support”. It was a humorous lecture with a touching tribute to the recurring theme of community in the lives of many patients. 

ABTA Patient & Caregiver panel. 

Another inspiring aspect of the conference was the opportunity to hear actual patient and caregiver experiences. Two couples were asked to speak of their experience. Meet Martin & Karma who have bravely battled Martin’s Glioblastoma diagnosis and Donna VanRyn a 9 ½ year Glioblastoma survivor who credited much of her success to the love and support of her husband. They also echoed the sentiments of many gathered to hear their experience, particularly Donna, who stated she has done so well that people have a hard time registering her illness. “I look too good to be ill to others”. Overall, the conference was an amazing experience and an opportunity to meet wonderful individuals who will be partners in the continued effort to advocate for brain tumor patients and their caregivers. 

CTBTA Night of Hope

Back in CT, I followed up the conference with the Connecticut Brain Tumor Alliance “Night of Hope” with attendees, friends, and fellow brain tumor survivors, including Chris and Ashley Cusano. It was an amazing evening of music, inspiration, and of course paella. We gathered and watched Morgan Platt’s rendition of “Fight Song” by Rachel Platten. We then ended the evening with inspiring words by Tracey Gamer-Fanning, President Emeritus of CTBTA. A 9yr brain cancer survivor, mother, wife, and relentless advocate whose message ensured that those present to hear her speak that night will never look at brain tumor patients the same again. 

To say that I have been inspired by these two organizations, their members, and fellow volunteers is an understatement. I have recently been matched with another brain tumor patient and though she has mentioned that my random calls have brought her some joy and comfort, I make sure she knows that by allowing me to be a part of her community, she has done the same for me. So indeed, it takes a village to heal a patient. 

Now that you’ve been referred, here’s how you can prepare for your consultation with a specialist:

1.      Prepare a Folder or a binder with your medical records:

 I did this for my mother when I was her caretaker and it reduced her anxiety and stress as well as that of my own. I organized the binder with tabs labeled as: Provider Info, Patient History, Directions but you can organize per your preference.

Provider Info: I listed the physician’s name, number, location, and specialty. Be sure to include your primary care physician and/ or any referring physician.  I also listed social workers and clinical care coordinators who facilitated my mother's care and discharge. Home Health Aide agencies, medical supply companies, etc.

Patient History: I photocopied my mother’s insurance card and kept a copy in the binder as well as a copy of her driver’s license. I then included a Word Document with notes regarding her MD/ Hospital/ Homecare Visits as well as all documentation they provided.

Directions: To various sites we would visit.

Please use caution as sensitive information must be safeguarded. I kept the binder with me at all times unless my brother or other family member I trusted was assuming duties.

2.      Keep a list of current Medications:

Medication bottle themed ID card that  I picked up at during a recent visit to rehab. It's cute, compact, and perfect for anyone to keep with them. 

This includes those that are prescribed to you as well as anything herbal and over the counter. You can add this list to the binder as well as keep a fold out mini medication card in your purse or wallet. Ask your MD’s office for one, most will have one readily available for patients to fill out and use. You can include pictures of the pills prescribed to distinguish by appearance.

Here are some sample tables I made:

3.      Bring any CD’s or images with you.

In some cases, the physician to whom you are referred will have you complete certain diagnostic tests prior to your consultation. Depending on their access to the testing facility, you may have to bring a CD/copy of the test results with you. Sometimes you will be given a copy at the time of the visit, other times you will need to request a copy from the Medical Records Office. I had a neurosurgical consultation with an MD in New York and brought my MRI CD with me so that he could make his assessment. Don't rely on the referring physician to fax or mail them, it could delay your appointment. 

4.      Avoid “Google” and the act of self-diagnosing.

 Did I listen to that advice? No, of course not. But I wouldn’t be a true advocate or PA if I didn’t at least tell you not to. Yes, it is reasonable and expected to be curious, but don’t assume that you have everything you are reading about. Often, you can spend (waste) valuable time with the clinician discussing hypothetical situations instead of addressing key findings/ indicators, a list of differentials (possible diagnoses based on findings/ clinical presentation), and treatment options or future outlook. DO however, google specialists involved in the general area of the problem, if known. You MUST do your due diligence and be your own advocate or one for someone you love if you are a caretaker. Educate yourself on providers who are known for the “problem” you are seeking help for. There are organizations which can help guide you. I've listed a few for brain tumor patients and cancer patients on my Resources page.  

5.      Bring a tape recorder with you (especially for those with phones not equipped with one).

 Ideally, you can bring a friend or family member with you. Often, hearing words like “tumor, lesion, cancer, surgery, stroke, etc.” are enough to shock anyone, and not remembering key details of the visit is frustrating and frightening. Sometimes with my own patients, I would find they wouldn't tell me if they didn't understand something out of fear of embarrassing themselves or appearing unintelligent. I had a background in medical sciences so I was able to be a crutch for my mother but even I found some jargon to be beyond my comprehension at that time and would do additional reading to learn. Then, I was fortunate in that two of my dear and close friends went with me to my consultations separately and they were both in the medical field, but not everyone has that luxury. Ask the physician if they wouldn’t mind you recording the conversation and review the file aftewards.

6.      Asking Questions

My first time writing (left hand), 2 months after surgery. Part of preparation for my first follow-up visit with Dr. Diluna.

 A clinician should be understanding and compassionate to what you are feeling and having to deal with. Don’t feel nervous to ask a question, it is your RIGHT. Ask what their experience is with your particular situation.  Ask if anyone else in the practice also performs/ treats these conditions. (You should google them too)  

The American Brain Tumor Association (#theABTA) shared an amazing list of questions to keep with you for your appointment and I would strongly encourage you to look at them or share them with someone you know visiting with a specialist.

7.      If you’re specialist recommends surgery:

Regardless of the type of surgery and reason, basic questions applicable to all are what is the “usual” amount of time for duration of surgery? What imaging or testing will I need prior to surgery? What is the expected recovery time immediately post-op and when are patients discharged home typically?  How often will I require follow-up care or visits with you?

For those with a tumor: You will likely be given information regarding location, size, quality or appearance on imaging, etc. Additional questions to consider include: What is the rate of recurrence? What are contributing factors which increase the likelihood of recurrence (genetics, previous recurrence, exposure, etc.)? Will I need chemotherapy or radiation (even if prophylactically)?

8.      Don’t be afraid to ask for a referral if you would like a second opinion.

You should never be uncomfortable or hesitant to seek a second, third (etc.) opinion, unless you are comfortable with the first, and only you can judge that. As a patient, when my surgeon suggested I consult with a surgeon in NYC, I felt comfortable with him and appreciated his willingness to recommend someone. And yes, I did seek another opinion from the neurosurgeon he recommended. How many should you have? Too many sources can be overwhelming and counterproductive. Only you can gauge how much is enough, but use caution. Spend your time and energy wisely. For me I needed it for my ongoing recovery after surgery.

9.      Update your provider visit information in the binder after your consultation.

Jot down key points from your appointment. It makes a great reference and no second guessing, ‘wait, did she say this was the next step?’, ‘what did he want me to do?’ It can be overwhelming, and for me it was. But, you figure out shortcuts, a rhythm, and slowly you feel like this (organization) is one thing right now you can control.

10.      Lastly, keep a positive and proactive outlook and try to have a sense of humor despite the craziness.

As insane as this may seem, even when you are dealing with the worst, laughing can be therapeutic. It may not happen at first. It certainly didn’t for me but by my third appointment I was past the disbelief, emotional stage and in tune with my personality, I got to the acceptance and proactive stage. At one particular visit, I remember sharing with my MD and a mutual friend, also a physician that I read some patients develop serious personality disorders even becoming promiscuous after neurosurgery. Having lived a fairly conservative life, I stated I thought promiscuity would be preferable over death or neurocognitive decline.  Luckily, since my surgery I’ve not suffered from death, neurocognitive decline, or the development of a loose character.