Beat Stage IV Hodgkins Lymphoma

Go to college, get a degree, find a great job, start a family....check! I had everything under control, well that was until January 17, 2017 when it was confirmed with a biopsy that I had Stage IV Hodgkins Lymphoma! It all started May 3rd 2016 when I experienced a very painfully enlarged lump on my neck. I sought help at urgent care thinking it’s clearly the result of an infection and all I need is antibiotics. I was informed that all test were negative, no need for antibiotics and ibuprofen would take care of the problem. I was also referred to infectious disease but I thought that was dumb since I clearly did not have an infection. I still felt the circumstances were a little odd so I sought advise from a doctor I trusted, my GYN. He referred me to ENT, tests we’re inconclusive. So I referred myself to Rheumatology because I was sure this was an autoimmune disorder. The Rheumatologist looked at my lump and said why are you here, you should be seeing an oncologist. After completing some blood work she swept me across the hall to an oncologist who said he would be glad to examine me. Seven months from the day of my initial complaint this would be the first doctor to say.... you have cancer!

I thought this man is very rude to conclude such a thing after only being in his presence for 12 minutes! On Jan 17, 2017 this “rude” doctor confirm I have Stg IV Hodgkins Lymphoma.... I cried, not only because my life flashed before my eyes but also because I was in severe pain by this visit. Since my first visit I had developed severe neuropathy to my right arm with contracture and neuropathy to my left hand. The oncologist demanded I go to the ER immediately. I was admitted to have an Ommaya Shunt and mediport implanted to begin Chemotherapy. I suffered the expected severe, fatigue, left thigh neuropathy, pain, and HAIR LOSS!

After the recommended 6 months of ABVD I went into respiratory distress from Bleotoxicity. My PET-CT also revealed the lymphoma had returned in my spleen (heart crushing). Doctors recommending the standard ICE chemo followed by stem cell transplant. I heard all about immunotherapy and fought hard for it to be my second line of treatment, after 2 months of no treatment I started KEYTRUDA. I was thrilled to have my first post Keytruda PET/CT only for the scan to reveal that the tumor on my spleen enlarged, spread to the gastric and groin. Specialist advised stopping the Keytruda and start Chemo. I am taking into consideration the two months no treatment no scan to decide I want to continue Keytruda. Through my journey I empowered myself with knowledge. It became clear to me that regardless of how my body is rid of the cancer (chemo/immunotherapy ), it would return if the environment which the cancer formed remained the same. So I would need to change my lifestyle, including diet, activity, stress level, and strengthen my immune system. I have been introduced to a Health Coach who developed a personalized healing program for me. He has explained to me that Hodgkins Lymphoma is not difficult to get rid of but very stubborn and will return. This naturopath program will not only support ridding my body of the disease but also protect my body against its return through diet. The cost for this program is $20,000 not including cost for cancer fighting dietary changes, supplements, and increased activity(exercise, sauna).

I have an inexplainable notion that accepting help is a sign of weakness and so I’ve challenged myself to share my journey and ask for support. My monthly expenses exceed my stable income, unpaid medical bills rest in my folder, I owe disability insurance 7k +, my health insurance coverage dropped me, and still I smile because I feel blessed to be able to share my journey after one year of fighting Lymphoma. Your prayers have gotten me this far and I know with your support one day I can look back and say we did it!

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Kafayat Sarumi 
Brooklyn, NY