The body can handle a lot. It’s the emotional part that will hit the hardest.
By Elissa Baldwin
My roommate said this to me the day I found out I might have leukemia. At the time, I nodded my head, but I had no idea how true this really was. I was just about to find out.
In October 2015, I was in the best shape of my life. But I knew something was wrong. I couldn’t explain it to anyone besides saying that I was gaining weight and just felt like something was “off”. I shouldn’t have been gaining weight. I was eating well, watching calories and exercising daily.
In addition to the weight gain, I was also starting to have bloating and night sweats. I had attributed night sweats to a new mattress cover. I thought the bloating was from my Irritable Bowel Syndrome (IBS). I later learned that these were all symptoms of leukemia.
By January 2016, I started to gain weight more rapidly and the bloating was now painful. I decided to make an appointment with the gastroenterologist to find out what I could do about the bloating.
I finally got in to see the gastroenterologist in March 2017. She gave me over the counter medication recommendations and told me to check in with her in four months. As I was about to leave, she decided to order a blood test to check for celiac disease or thyroid disorder.
That blood test saved my life.
One week later, I received a phone call from the doctor telling me that everything looked good except that my white blood cells were very low. I was referred back to my primary physician for more testing.
After three more blood tests, I was referred to the hematologist, who specialized in blood disorders. He ordered a very extensive blood test and said that if this didn’t tell him what he needed to know, I would need to have a bone marrow biopsy. I had a scheduled trip to Europe in a couple weeks, so we tentatively scheduled the biopsy for the day after I returned – just in case.
One week after that, the doctor called to tell me we needed a biopsy immediately. I was very nervous that he moved a “tentative” biopsy up by four weeks, but I had no other information over the phone and would just have to wait.
I went in for the biopsy and was told that there were two possibilities – leukemia or Sjorgren’s, an autoimmune disorder.
I was devastated. Wasn’t leukemia a child’s disease? I was 34 years old and healthy. Could I really have cancer? I didn’t feel like my symptoms met the description of Sjorgren’s, so I was pretty sure I had leukemia.
The biopsy results wouldn’t come back for approximately two weeks, so I decided to go on my planned solo trip to Europe. I left 5 days after the biopsy. In knowing that I likely had leukemia, I made a point to make every single minute of my trip count. I was still going to have an amazing backpacking trip and something like cancer wasn’t going to stop me.
“I was devastated. Wasn’t leukemia a child’s disease? I was 34 years old and healthy. Could I really have cancer?”
One June 1, 2017 I woke up in Lisbon, Portugal. I had already been to Barcelona and was flying to Norway that night. Since my flight wasn’t until the evening, I decided to leave my bags at the hostel and hit the town on my last day in Lisbon. Just as I was leaving the hostel, I realized that I hadn’t checked my email yet. When you travel abroad, you learn to take advantage of wifi when you have it.
The first email I saw was from my doctor and it was titled, “Lab Results”. I opened it up and he told me that I have Acute Myeloid Leukemia and need to come back home immediately.
Even though I knew that I likely had leukemia, nothing could have possibly prepared me for hearing the actual diagnosis. Nothing.
I was 6000 miles from home and it was 2:30am there. I was all alone and had nobody to talk to. Nobody to comfort me. Nobody to tell me it would be ok.
I was 6000 miles from home and it was 2:30am there. I was all alone and had nobody to talk to. Nobody to comfort me. Nobody to tell me it would be ok. So, I sat in the community room of the hostel and cried. For an hour. It was awful. I just wanted someone to talk to. Anyone.
I finally pulled myself together and pushed away all the emotions for the day. It was time to hit the town – at least until my parents woke up.
Those pesky emotions are always lurking under the surface, though. This photo was taken about 90 minutes after I read that email.
I wanted so badly to capture something of my last day in Lisbon. But I get sad when I see this picture. I see someone who is trying so desperately to smile. Yet, it’s a smile that doesn’t quite reach the eyes.
A few days later, I flew home and started my treatment. I was scheduled to have one week of induction chemo, which would leave me in the hospital for 3-4 weeks while I recovered. After that, besides blood tests 3 times per week, I was to do a week of outpatient chemo every five weeks for four more rounds.
I was in the hospital for a total of 32 days. My chemo treatment actually went fairly well. They gave me a lot of anti-nausea meds, so other than extreme fatigue and appetite loss, I was feeling generally ok.
All was good until my hair started falling out. I have thin hair, but a lot of it, so it was coming out bit by bit for over a week. I didn’t want to just do a shave and get it over with. So, I called my cousin and friend and asked them to come by to make it a better experience for me. My friend would give me a makeover, shave and then trim my new wigs and my cousin would photograph the whole thing.
Shave day finally came. When I woke up, I quickly realized that I had waited one day too long. My hair had fallen out in chunks the night before. I woke up with a bald spot in the back and barely any hair at my temples.
I was so embarrassed that I didn’t even want the nurses to see me like this. I put on a scarf until my cousin and friend came by later that night. The entire day was awful. I cried all day waiting for the moment that would be coming soon. Now, I wasn’t just fat from all the water weight, but I was about to be bald too. I spoke to my AML survivor friend and she shared her shave story with me. It was comforting talking to someone who had been through it, but didn’t make me feel any better.
The girls finally came by in the evening and started the process. They were doing their best to make it a fun atmosphere for me. When it was time for the shave, I made it through about half of it without crying. I started to think I could actually get through the entire thing without crying.
I was wrong. The tears came slowly at first and then I completely broke down. At that point, my cousin set down her camera, sat down in front of me and held my hands. There we sat, looking at each other and crying. This was the worst and most emotional day of my life, but that is a moment I will treasure forever.
This was the day I started my new normal as a bald cancer patient.
The next few months were a blur. I was never away from the hospital for longer than a few days. Then a fever landed me in the hospital for a 5 day stay after I had a reaction to a platelet transfusion.
During chemo weeks, my parents would come to visit and take me to restaurants and to do other fun things on my off time. This made life a little bit better for me. When I wasn’t in chemo, my white blood cells were generally so low that I wasn’t able to leave my house for fear of getting an infection that I wouldn’t be able to fight.
My last chemo session was on November 5, 2017 and I was declared cancer free one month later.
Hearing that I had no leukemia cells left should have been the best day of my life, but it wasn’t. I was depressed and felt empty inside. I sought counseling soon after and was told that it is very common for cancer patients to be so strong and positive during treatment and then completely break down once it was all finished.
Therapy was great for me. I went for several months and finally started to deal with the emotional impact of cancer that I had pushed away for so long. My therapist taught me how to deal with the triggers and flashbacks in a healthy and positive way.
I started to enjoy my life again. The water weight was finally starting to go down. I also got hair extensions, which made me recognize the person in the mirror again. That was really all that I wanted. I wanted to see ME again. I didn’t want to see a cancer patient anymore.
This is me today.
It is time for me to live my life again and embrace my new normal. I have learned so much during this crazy journey and strangely enough, I’m kind of glad that it happened. My outlook on life is completely different.
I learned to slow down. I learned to stop and smell the roses. Literally.
I learned to appreciate the little things.
I found out how truly amazing my family and friends really are. I will appreciate and cherish them so much more that I ever did before.
I learned that cancer doesn’t define me. It will always be part of my story, but I will never let it bring me down.
I see this as my second chance in life and I plan to make it a great one.
I found purpose in my journey. I want to share my story with others and hopefully inspire them to get through their own journeys with positivity. Life won’t always be rosy and perfect. Bad things happen. It is ok to get knocked down and be angry or sad. Sometimes all you can do is just keep swimming. Keep chugging that train up the mountain. Put one foot in front of the other.
Whatever you do, please never give up. Life is worth living and you can make it a great one.