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Patient Profile: Cali Trepkowski

In March 2015, 8 year old Cali Trepkowski vomited on the way to school. She stayed home from school that day, but she seemed to be fine as the day progressed. A few weeks later she vomited again. This happened three more times so her mom Carrie called the pediatrician who determined it was allergies and put Cali on an allergy medicine. But the vomiting continued. The pediatrician said Cali might be lactose intolerant and advised Carrie to take all dairy out of Cali’s diet. But still Cali vomited. In June the pediatrician said to remove all the sugar from Cali’s diet, but the vomiting continued. By July Cali was vomiting every three days. A visit to the emergency room resulted in a gastric diagnosis and a follow up with a gastroenterologist. The gastroenterologist scheduled Cali for an endoscopy on August 14th, but by August 1st she was sleeping all the time and still vomiting so they went to the ER again and Carrie, who was no longer willing to wait to get results, insisted the endoscopy be performed immediately. The endoscopy didn’t provide answers so the ER doctor scheduled a brain MRI for August 14, the original date for the endoscopy. The morning of the MRI Cali woke up and stumbled into a wall. “Her gait was off,” says Carrie who had become increasingly worried about her daughter. The scan revealed that Cali had a 4.5 by 5 centimeter tumor in the back of her brain right up against the brain stem. Cali had cancer — Medulloblastoma, the most common form of malignant brain tumor in children.

Cali was immediately transported to a hospital in Miami, Florida where her surgeon put a drain in her brain to reduce the swelling. It was the swelling that was causing Cali to vomit. On August 17th Cali’s surgeon was able to remove the entire tumor. It was very literally not a day too soon. The surgeon told Carrie that miracles do happen and if they had waited one more day they would very likely have lost Cali.

Four weeks after surgery Cali underwent proton radiation — which Carrie learned is a type of radiation that causes less tissue damage. She says that with traditional radiation all of Cali’s major organs would have been vulnerable but with proton radiation only the top of her kidneys were affected. Then Cali had nine rounds of chemotherapy over 11 months and more than 20 transfusions. In addition, she began speech, occupational, and physical therapies and therapy with the Special Equestrians that helped Cali recover her strength and helped with her balance.

“She truly is a miracle,” says Carrie of her daughter who has some lasting side effects such as slow processing speed, and abstract learning, attention, and balance issues, but overall has had a remarkable recovery. “In the cancer world we’re the lucky ones,” says Carrie who is all too aware of how easily it could have gone the other way for them. “Once it becomes part of your world you see it everywhere. You have to give hope to others going through it.” she says. “I am very adamant about sharing her story and helping others.” Carrie stresses how important it is for parents and patients to press for answers from their doctors. “I knew something wasn’t right,” she says. “I don’t care what a doctor tells you. demand the testing. Don’t wait. Just because they are doctors doesn’t mean they are all knowing.” In Cali’s case so many of her symptoms were overlooked because the doctors she was seeing were not familiar with her type of cancer and because it doesn’t show up in normal blood work. Carrie now knows that when a child throws up in the morning, if it’s not a flu or other virus, it’s a sign of a brain tumor and she wants other parents to know that too.

Cali is 10 now. She’ll be 11 in February. She has an MRI every three months and while she currently has no evidence of disease, the highest chance of relapse is two years post treatment. After five years with no relapse Cali will be “cured” and will have a brain scan once a year for the rest of her life.

Going forward, Carrie says Cali will see an endocrinologist to address the hormonal side effects that accompany treatment. Carrie, who is very proactive in her daughter’s care, suspects a growth issue. “She hasn’t had much growth in two years,” she says. “Children will stop growing when there’s a brain tumor.” Carrie is concerned that without supplemental growth hormone Cali won’t reach a height of five feet. “Your whole world becomes taking care of your child and finding the best treatment,” she says. “I just want her to feel normal.”

As for the rest of the family, things are starting to become what Carrie calls a new normal. Carrie is extremely dedicated to supporting other families in the cancer community, and raising money for cancer research and the Make a Wish Foundation. She and her husband are both teachers and have three other children who Carrie says “didn’t have a mom” while Cali was undergoing treatment and Carrie was focused on caring for her. “I’m finally starting to be able to enjoy things again and I have these other kids here who need their mom,” says Carrie.“We do things differently now. We are building memories. Making as many memories as we can. We do as much as we can and enjoy it. We enjoy life.”

Milton Marks Family Camp – A Respite from Brain Cancer

For the past three autumns, a small gathering has taken place in the wild beauty of Sonoma County, California.  There, doctors, nurses, musicians, therapists, and body workers, among others, have convened to offer support and respite to a unique group of people – families living with brain cancer.

But unlike many specialized family camps that focus on a child with cancer, this one flips that model – offering support to a family with a parent with cancer.  It is the only one of its kind.

The diagnosis of brain cancer is a catastrophic event in the life of a family.  The brain is the source of a person’s ability to communicate and interact.  Certainly a breast or prostate cancer diagnosis can be devastating for an individual and their family.  But the patient’s essential personality can remain intact throughout the grueling treatments.  That may not be the case in glioblastoma, the most virulent and fast-moving type of brain cancer.  And it is incurable.

Brain cancer can strike people in the prime of their life, when their children are young.  During the months of treatment, a patient’s ability to speak, reason, laugh, or interact may be affected adversely.  The sight of dad or mom deteriorating physically and mentally can cause immense suffering for the family.

In 2010, Abby Marks found herself living this life with her husband Milton Marks and their three young sons.  After Milton’s death in 2012, Abby came up with the idea of offering a place of respite and connection for families experiencing the impact of brain cancer.  Working with the University of California Medical Center’s (UCSF) Neuro-Oncology department, where Milton had received treatment and care, the camp launched in 2014.

The camp’s mission is to provide connection, community, and fun!  It is a camp, after all.  There are sing-a-longs at the campfire, art projects, music, ropes courses, swimming, and more.  The UCSF doctors and nurses that tend to these families can also attend, adding a new dimension to the patient/medical professional relationship.  There are therapists and body workers available, as well as a professional photographer to document this island of respite in the long haul of brain cancer.  Families leave with sense of connection to others living this unique journey.

The Camp is now gearing up for its fourth year.  A few families are returning.  Most are new.  All are looking forward to spending three days being cared for, understood, and encouraged as they navigate this difficult journey.

[Disclosure:  Amy Gray is the operations manager for the Milton Marks Neuro-Oncology Family Camp]

Sources:

https://www.miltonmarksfamilycamp.org/

https://issuu.com/ibta-org/docs/ibta-2016/30

http://meetinglibrary.asco.org/content/173075-180

Stupid Brain Cancer!

Matthew Zachary

Matthew Zachary

(Matthew Zachary is a brain cancer survivor and founder of Stupid Cancer.)

Brain cancer. Those two words strike fear into the hearts of man perhaps more than any other cancer. After all, it’s your brain. Some might argue it’s the one thing you can’t live without. (Take that, heart!)

Now, I’m not one to start pitting body parts against each other in the world of cancer. I’ll leave that up to the body-part-specific groups. Let that infighting enjoy itself for all it’s worth. Once they realize that the future of medical research is rapidly shifting to biology, immunology and genomics, rather than geography, they’ll soon realize it’s the new bandwagon to hop on.

When I was a 21-year old college senior, I was diagnosed with a very aggressive form of pediatric brain cancer: medulloblastoma. There were only 200 cases a year, the tumor was congenital and it nearly always occurred under the age of 12. I was one of the rarest cases ever seen at the time; and that did not bode well.

What’s more, the fact that I was not a child presented even more unique complications than otherwise thought. As an emerging young adult, issues of college, fertility, relationships and mental health had to weigh in. They didn’t of course since it was the 1990s and the idea of “patient-centered care” was not a concept. Back then you were lucky to be alive to deal with whatever side effects you had, all for the privilege of not dying from cancer. And those were the magic words: the “privilege” of not dying.

Considering I was given six months to live and, after those six months, a whopping 50% chance to survive for 5 additional years, I’ve done alright. January 10th, 2016 was my 20th cancerversary in somehow defying the odds. There is no rhyme, reason or explanation for how this all came to be. I just got lucky.

And that’s all anything is, really. Luck. Good luck or bad luck, it’s still luck. Yes, there are conscious choices we believe we can make, but, in the end, we are all bound by the singular commonality of chance. Call it what you will: karma, God’s will, fate, metaphysics, destiny, etc…all we have is our free will and the privilege to make choices in response to shit that is happening or in advance of shit that may happen.

Which brings me to my point. (I actually had a point, I promise)

I founded Stupid Cancer because I wished I had that kind of resource at my disposal when I was depressed, alone, afraid and without peer support. I didn’t even know that peers support was a thing. “You mean there are other college students out there with cancer who understand what I’m feeling right now?” What a concept.

It’s easy to say that no one should face cancer alone It’s entirely another thing to actually fill that need. Stupid Cancer was the community I needed that I never got to benefit from. And going back to my aforementioned comments about “all cancers matter”, I really didn’t care if I were connected with a young adult with leukemia, breast cancer, colon cancer or brain cancer. For young adults — a largely unknown demographic in the war on cancer — the playing field is leveled when you’re told those three words, “You have cancer.”

Stupid Cancer is entering it’s 9th year of operation and has proudly emerged as the largest support organization representing teens, adolescents and young adults (15-40). We’ve also inadvertently become a home for the hundreds of thousands of pediatric cancer patients who survive and grow up. It has become a remarkable nonprofit brand in healthcare that has democratized survivorship. Because, no matter your diagnosis, you have the right to survive with dignity, quality and be treated age-appropriately.

In 1996, that did not happen. In 2016, 1.7 million Americans will be diagnosed with a primary cancer. 80,000 of them will be children and young adults. We are no better or worse than other age groups; we’re just different.

And we matter.

Cancer survivorship is an art. And the art of your survivorship is how you choose to get busy living, The era of cancer survivorship has begun. It is not about how long you live, but how you live, that defines your legacy in this life.

So for now, I’ll leave “cure-hunting” to everyone else.

9 Ways to Propagate Patient Power

A success story is about having a positive outcome. We mostly hear about success stories as monetary achievements, but that’s really selling the word “success” short. I’m a brain cancer survivor. That’s a success story! I was barely out of my 20s when I was first diagnosed with what was first believed to be a benign brain tumor. My oldest daughter was only a year old then. She just turned 25. She’s only four years younger than when I was first diagnosed.

Where did the time go? I think to myself, “life is half spent before we know it.” There’s a saying that experience is the best teacher, but the tuition is high. Oh, so true! Through my treatments and surgeries I’ve lost the hearing in my left ear; the ability to swallow on one side; certain vision abilities; my tongue is paralyzed on one side (amazingly, the other side works to the point that you mostly can’t tell about the paralyzed side); I also have some memory loss. But I’m still here.

While of course I wouldn’t have chosen these circumstances — they happened to me and because of them I’ve gleaned a great deal of knowledge in a few particularly important areas: doctors, the business of medicine and being a patient. It’s because of my medical history that I have met or been treated by so many doctors. Some of those doctors have at times actually slowed down my path to better health or recovery — but I have learned from those experiences. I also know that there have been doctors without whom I wouldn’t be here today.

The enlightenment that I have achieved is important to share with those that may be at the beginning of their own healing path or one day will be walking it. They pertain to any healing path. Here are nine of the most important things I’ve learned.

If you know something is wrong, something is most likely wrong 
There had been years in between my being diagnosed wrong, and being diagnosed right — I had many symptoms. My particular cancerous brain tumor was relatively slow growing; the yearly MRIs indicated that “it may be larger due to angle or technology.” Instead of this being an alarm bell, or at the very least an indication for further testing, my doctors were lulled into a state of complacency.

I was seen often, looked quite healthy, and so I was probably just overreacting. I wasn’t. The tumor that looked slightly larger every year, was slightly larger. By the time I found a doctor that listened to me, and didn’t just look at me… the tumor had grown to twice the size than it was when it was originally diagnosed and treated. None of my previous doctors had compared my most recent MRIs with my original MRI to see it had grown. Listen to yourself, and campaign heartily.

Freedom to Feel
After you’ve received your diagnosis, you need to have the freedom to feel what you feel. You may have friends and family members that will put different spins on your things. There are those that are full of “gloom and doom.” Then there are others that will tell you not to be depressed when you’re depressed. They will tell you to be appreciative instead for all you do have. The intentions of these upbeat souls, is in the right place, but it will be difficult not to feel depressed some of the time. It’s okay to feel down about being sick, it doesn’t mean you can’t feel positive about your outcome, nor does it mean you can’t feel appreciative about what you have. Just knowing that is part of Patient Power.

Doctors are just people 
We put doctors on a pedestal. We believe them to have our best interest in mind, and I’m sure most do. However, doctoring is also a business. Doctors either consciously or unconsciously make decisions based on their ego, their desire to be noticed in the medical field, maybe even based on multiple reasons. This may sound callous, but think about it. Haven’t we all made a business decision here and there based on multiple reasons? They do what they have to do-you do what you have to do. Again being aware that this may be a part of the landscape is part of having power as a patient. Don’t be flattered that a doctor is interested in taking you on as a patient just because he’s considered an excellent doctor. Think about why the doctor will be good for you.

Doctors will seldom say “I don’t know” 
How much easier the process would be if doctors that don’t know, just said it. You could then take this non-information and move on, but instead a “not knowing doctor” can really slow down the process. You end up wasting valuable time on an opinion that should not even be in the mix. This makes the process more difficult, but being aware that it does exist, keeps you aware and on your toes, and a better patient. Try asking your doctor “Do you know if this will work?” “How will it work?” More information is better. If the answer is not what you want to hear, that’s okay. It’s an answer. You won’t be going to that doctor.

Use the Internet
This may seem obvious, but there are still those that don’t have access to the internet, don’t know how to use it, or perhaps are feeling too overwhelmed after receiving a bad medical report to go searching on the internet for themselves. If you don’t have or know how to access the internet, find someone else that does. There have been stories written about how people self-diagnose online. We’ve all read these stories and it’s important to understand the difference between finding out information after you’ve already received a medical diagnosis and trying to hunt down information to diagnose yourself before you’ve even been to a doctor about what is ailing you. That difference is enormous.

The Internet is invaluable. When I had my first surgery in 1990, there was no real Internet. What did exist was extremely slow, and had very limited information. These days, if you dig, you can find out so much, not only about your illness, but about your doctor’s background, and what other treatments and research is available as well. There are services that allow patients to comment, even rate doctors with whom they’ve consulted. This is good information. Information is part of Patient Power.

The more information the better 
I like doctor rating sites. These services keep doctors on their toes. If a doctor asks you to sign a legal document agreeing that you will not participate in one of these sites (I’ve heard that this is something that some doctors are doing now), walk away. If a doctor is that worried about you going online and making a negative comment about them, then this is not the doctor for you. Most doctors aren’t concerned about these sites because they know they’re doing a good job.

No doctor should make you feel your questions are a waste of time
No doctor should make you feel your questions are stupid, or that you’re stupid. Again, not all doctors know all things. Sometimes condescension is “I don’t know” expressed differently.

Opinions, opinions, opinions
It’s said you can take opinions all day long. You can… and you should. The more complicated the medical issue, the more opinions you should get. Try and get as many as your insurance will pay for, or you can afford. Yes, It can get to be overwhelming to get/have many opinions; it’s definitely easier to get only one — but what price easy? The one opinion you have may be a wrong opinion. It is so worth taking the time and doing the research. The best solution for you will become clear. I know from experience that this is true.

Always trust your gut
I asked one of my doctors about a certain therapy, and he emphatically told me that the therapy was not for me. Turns out he was wrong. That therapy is what may have saved my life. When he told me it was not for me, it didn’t sit right. I trusted my gut and pursued it anyway. Over my years as a patient, I have had a doctor strangely come to my bedside and cry. I had another who only returned my calls at 11:30 at night. Another told me we would be seeing each for the rest of my life, only to then have a follow up conversation several days later where he wished me luck, but that I should be seeing another doctor for follow-up.

All these things at the time seemed strange, but looking back now with hindsight, I know that all of these responses might have been indications of either things that were not right in their own lives, or in the most glaring cases, failing on the part of that doctor. So listen to your gut. If it doesn’t feel right, it probably isn’t.

(This post was originally published in Huffington Post)

 

Brain Cancer Survivor Helps Others Through Life Crises

Heidi Gottlieb is a brain cancer survivor who uses her experience as a patient and cancer survivor to guide others through their own life crises.

Twenty-five years ago, Gottlieb was diagnosed with a brain tumor. Her experience with being diagnosed at a young age (29 years old) at a time when there was no internet and limited treatment options for brain cancer taught her perseverance and the importance of patient empowerment.

After being misdiagnosed, enduring two grueling brain surgeries, undergoing two bouts of radiation treatment and a long re-education period where she had to relearn certain life functions such as how to swallow, Gottlieb made a commitment to teach others how to help empower themselves and march forward rather than give up.

One of the first events Heidi Gottlieb undertook as a cancer survivor and advocate for patient empowerment was to create a

250-mile fundraising walk from New York to Boston. As she walked, she spoke at schools and organizations along the way about her experience and her thoughts and feelings about cancer survivorship.

That walk taught Gottlieb that she wanted to dedicate her life to helping others through their life crises. She enrolled in classes and recently earned her certificate through the International Coaching Federation  as a Professional Coach.

In her role as a Transformation Coach, Gottlieb teaches people (20% are cancer patients) how to overcome personal crises, energize themselves, reach their full potential and move toward a more productive, happier life.

There is a lot written about empowering the patient, which is good. But the people that I want to reach are the survivors. Those who want to lead a so-called normal life, have a job and have a personal life. These people are sometimes “lost”. They are thinking about getting new jobs and wondering if they should tell their potential employer that they have cancer. I would like to help them”.

I asked Gottlieb if she considered herself an empowered patient. She replied,

“Yes, I am an empowered patient. I have been a student of my illness for 25 years and if you have been a student of anything for 25 years, you live and breathe it. I have been immersed in the medical field since I became ill because I wanted to know everything I could about my condition. It was difficult. There was no internet. Since I was not a medical student, there was no way to research about my brain cancer. I was bounced around from one doctor to another. I underwent surgery and radiation without knowing much about what I was doing.

 After my experience, I really wanted to dedicate my time to finding out more about brain surgery, brain cancer, and cancer survivorship in general.”

I asked Gottlieb what advice she could give other cancer survivors. She explained her philosophy as follows:

 “I know that the fact that I have been through so much and am still here is highly unusual. Not many brain cancer patients are survivors. My cancer could come back at any time. I have come to a place where I try very hard to live in the now. You never know what will happen. Through my experience, I have been given the gift of understanding that I must enjoy every moment.”

 Heidi Gottlieb has her own website where you can learn more about what she does as a Transformational Coach. She blogs often about her feelings on being a cancer survivor and an empowered patient. I have posted one of her latest blogs; read it here.