I spent every night tearing my skin apart, but specialists refused to listen and insisted it was dry skin or an allergic reaction.
to see more of our trusted coverage when you search. For months I was unable to sleep at night and struggled to function in the day because I was so exhausted.
I would wake up in the night crying in pain as I scratched my skin so severely that every day I had new wounds. I found utensils and brushed them against my skin, hoping that it might ease the pain, but the itching never stopped. It started with itching in my hands and feet that was worse in the mornings and evenings. At first, it would taper off during the day and I could resume my life.
But over time, the itching became constant. I was covered in so many scabs that I looked like I had some sort of disease. But no matter how hard I tried to convey my struggles to doctors, they did not listen. I thought it was just allergies at first, or maybe an environmental reaction.
I went to several doctors to see if they could help, but no amount of antihistamines seemed to work. Even when I was prescribed the highest dose of antihistamines and strong steroids, my skin felt like it was on fire. I continued trying to eliminate any potential irritants, and we even wondered if it could be a lack of moisture or mold poisoning. Every doctor I saw threw out different ideas.
One doctor said it could be a mast cell activation syndrome reaction, another said maybe it was autoimmune, and I was also told it could be anxiety. I went to my primary doctor, an allergist, a dermatologist, a rheumatologist and an oncologist to have an obscene amount of blood work done. We did patch testing on my back, but I drew the line when the dermatologist suggested treatment for scabies and parasites.
I knew that was impossible because my son and husband had no symptoms. I also knew it was impossible for me to have something highly contagious and not actually present any of the symptoms. I felt like I was going round in circles and not being taken seriously, all the while, the itching wasn’t getting any better. Having gone through weeks of appointments and tests, I felt defeated.
I was in agony from constantly tearing my skin apart, yet I was no closer to a diagnosis. One of my doctors told me I had dry skin and just needed to hydrate it, but I knew it wasn’t that simple. I would not have continued going to appointments if I thought it was just a sign of dehydration.
'Small Lump in My Neck' By January, I heard a story from a friend of a friend whose daughter had Hodgkin Lymphoma. She too was waking up in the middle of the night ripping apart the skin on her feet and spent months searching for answers. When I researched Hodgkin Lymphoma shortly after, I became aware of a very small lump in my neck that I had not previously paid any attention to.
I was not fully convinced that I could have it, but I started to put the pieces together in my mind and knew it was possible. Just to be safe, I went back to my doctor and asked to be tested for Hodgkin Lymphoma, if only to rule it out. I was referred to an oncologist in February who suggested it was something I caught from my animals—as if I had fleas or something.
It was a double whammy because I felt so dismissed, and this doctor was insulting my animals by assuming they must have some contagious disease. Even the oncologist seemed reluctant to do a biopsy of the lump in my neck, but I kept pushing. I had an ultrasound, biopsy and a CT scan which showed swollen lymph nodes in my neck and armpit.
When the first biopsy came back inconclusive, we agreed to remove the lymph node in my armpit and test that instead. I thought we were just testing to rule out Hodgkin Lymphoma, but the results came back in March showing that I do in fact have cancer. I found out by seeing my chart results uploaded on a Friday evening, but no one spoke to me about the results until I called the following Monday.
It was such an awful way to find out. To not be able to talk to anyone about it for the entire weekend was extremely stressful. This would never have happened if I had not kept pushing. Thankfully, because I persisted, I now know that it is stage 2 Hodgkin Lymphoma, meaning I caught onto it relatively early.
I am still in shock, but the fact that I listened to my gut and pushed for answers meant that I could get slightly ahead before it spread even further. Overall, I am grateful that I eventually found a good doctor who has helped me manage the itching while I prepare for treatment. I have started taking medication to reduce my itching and it has given me my sanity back.
I have decided to freeze my eggs so that we still have the option of having more children in the future, should we wish to. Once I complete IVF treatment to freeze my eggs, I will have a meta-port placement surgery and start chemotherapy. I am definitely anxious for the next several months, but if this process and the ongoing medical procedures have taught me anything, it’s that that I am a lot stronger than I gave myself credit for.
I encourage people to not give up advocating for themselves, to listen to their gut and to keep pushing for answers. I knew there had to be a reason for my symptoms, and even when doctors made me feel crazy, I refused to give up. You know your body better than anyone else. Remember that you are stronger than you think.
You can do hard things. If you are going through a hard time right now, don’t let the hard days win. Amber Aquart, 34, is a professional dog trainer and pet behavior expert who resides in Virginia. Following her cancer diagnosis earlier this year, she has been documenting her experience on social media to share the reality of stage 2 Hodgkin Lymphoma.
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