My Journey: Understanding My Cancer

Many of you have asked me about my cancer, and I wanted to take a moment to explain it—not just the facts but how it affects my life and the journey I’m on.

I’m currently living with GIST—Gastrointestinal Stromal Tumor—a rare type of sarcoma with a malignant mutation. This cancer is persistent and complex, and its behavior makes it challenging to treat. While there is no cure for my type of GIST, and it has metastasized, advancements in research and treatments continue to offer hope for managing the disease effectively.

I first faced it ten years ago when it appeared as a single, massive tumor. Surgery removed the tumor, but it also required the removal of my stomach and part of my pancreas because those organs were compromised. It was a difficult recovery, but I adapted and lived a fulfilling life afterward.

Now, the cancer has returned and spread to multiple areas, including my lymph nodes, esophagus, heart cavity, diaphragm, under the lungs, and liver (with five tumors there alone). Several tumors are also scattered throughout my abdominal area, including one behind my pancreas that is pressing on my spinal cord. This tumor, currently at 7 cm, affects both my pancreas and spinal nerves and is being targeted with radiation to relieve symptoms and prevent further damage. All my treatment now is palliative, focused on managing symptoms and slowing the progression of the disease to maintain as much quality of life as possible.

The goal is straightforward yet vital: to halt tumor growth, keeping them dormant for as long as possible. The more they grow, the faster they damage my organs—and that will ultimately be it for me.

Why IV Chemo Isn’t an Option

IV chemotherapy is not effective against GIST. The type of cancer I have does not respond to it, and even with aggressive treatment, the cancer cells wouldn’t be eliminated. The risks far outweigh the benefits.

Additionally, IV chemo works by killing cells, often targeting rapidly dividing ones, which includes both cancerous and healthy cells. In my weakened condition, IV chemo would do more harm than good, as it would deplete my body’s ability to recover and function.

Why Surgery Isn’t an Option

Surgery saved my life ten years ago, but it’s not feasible now. The number of tumors makes surgical removal impossible. It’s not just about removing one or two tumors; it would require an extensive and risky procedure to remove all of them. Even removing a few tumors isn’t practical because the recovery process could delay my ongoing treatment and set me back significantly.

The Current Focus of My Treatment

Managing my cancer requires a multi-faceted approach due to the complexities of my condition. Since I no longer have a stomach, my body struggles to absorb essential nutrients like iron and B vitamins; I do not absorb sodium either. This significantly impacts my energy levels and overall health. Additionally, my pancreas, compromised by previous surgery, does not release enough enzymes, further complicating digestion and nutrient absorption.

Currently, my treatment combines oral chemotherapy and radiation. Oral chemo works at a molecular level to target the cancer, but finding the proper chemo has been a difficult and ongoing process. After three attempts, each with its own difficulties, I am starting a fourth type with cautious optimism. Even though it’s oral, it is still chemotherapy and comes with significant side effects.

The first trial, Imatinib, led to severe intolerance, landing me in the ER. The second trial, Sunitinib, required months of adjustment, but after six months, my tumors continued to grow. The third attempt, Stivarga, despite all the associated complexities, proved ineffective. These treatments have brought numerous challenges, including constant nausea, digestion issues, severe dehydration, skin problems, dizziness, extreme fatigue, and even the risk of seizures. The chemo drugs also interact with other medications, requiring careful monitoring each time and proper adjustments. To manage these symptoms, I receive weekly supplement IVs, which help stabilize my condition and provide much-needed relief.

Radiation, as part of my palliative care, is strategically used to address immediate risks and prevent further complications from specific tumors. It is not curative but is used strategically for tumors that threaten vital organs. For instance, the tumor pressing on my spinal cord and affecting my pancreas is being targeted to prevent further damage. While radiation may not improve my quality of life significantly, its primary goal is to halt tumor growth and mitigate additional complications.

What I Hope For

The goal of my treatment is to manage cancer before it causes further complications, like multiorgan failure, and to buy me some time while science advances. Cancer research is advancing rapidly, and I hold onto the hope that a breakthrough treatment will emerge—one capable of entirely eradicating this disease or providing more effective long-term control.

Why I Share This

I want to share my journey not only to answer the questions many have asked but also to provide insight into the complexities of living with a rare and persistent cancer. Navigating this journey isn’t always straightforward, with each decision requiring a careful balance of risks and potential benefits.

Living with this condition has not been without its challenges. I've lost my hair, which is one reason you may not see many pictures of me these days. It’s been an adjustment but also a reminder of the strength it takes to face this journey. The treatment and cancer itself affect my blood pressure and energy levels, making daily routines difficult, and needing assistance for simple things has become more frequent. I can’t work, and I face daily symptoms such as pain, sometimes fevers, and fatigue. It’s been over a year in this process, and while these challenges are immense, they are also a reminder of the strength required to keep moving forward.

This journey has also taken a toll on my mental health; dealing with depression has been part of the initial process, especially as uncertainty grows. To help process these emotions and find purpose, I created this blog as a way to share my experiences and connect with others facing similar challenges, offering a space where they can feel seen and understood.

Through it all, I remain focused on the present moment and on finding joy where I can. Your support, care, and understanding mean more to me than words can express. Thank you for being part of this journey with me.

With love and gratitude, Malena 🌿