I was diagnosed with adenocarcinoma of the small intestine when I was 26 years old. It’s not a common cancer for young women. It’s mostly common in men over 50. And it’s usually in the colon, not the small intestine. It was a miracle that we found it. Had I not been a nurse and had I not been so insistent, we probably would not have caught it in time. I had surgery, tumor removal with a small bowel resection and appendectomy, and then six months of chemo. My oncologist told me when we started chemo that she normally gave this type of chemo to men, and when she gave it to women, it was women that had already gone through menopause. She said, ‘I’m not sure what it will do to your reproductive system.’ She offered to postpone chemo so I could get my eggs harvested or have some zygotes frozen. Having biological children was low on my list of priorities though, so I declined and we started chemo. What I wish she had said was, ‘This chemo could potentially give you leukemia in 5-10 years.’ That would’ve been more helpful.
Seven years later, one week after my 33rd birthday, I was diagnosed with Acute Myeloid Leukemia (AML). I had no symptoms. Earlier in the week, I visited my gynecologist because I had been having frequent periods. My doctor dismissed my concerns. I had an IUD (intrauterine device) as birth control, and frequent periods are a side effect. She told me, ‘You knew this was possible when we put it in.’ I pushed for her to address the problem though. Finally, to appease me, she ordered some lab work and an ultrasound to be sure the IUD was in the correct position. It was. For my lab work, she could have just ordered an H/H, just a blood count to see if I was anemic. Instead she did a complete blood count, with differential. That looks at all of my blood cells. And that was how they caught the leukemia.
Almost a week after my birthday, I was on my way to meet my parents for a birthday lunch when I got a call from my gynecologist. She called me herself and it is never good news when a doctor calls you directly. She told me some of my counts were low and she had made me an appointment with a hematologist. I pulled over at a gas station and had her to give me all the lab values. My white count was fine, normal. My H/H was normal. My platelet count was a little low but that was no reason for alarm, my platelet count was always a little on the low side since my first round of cancer. My neutrophil count was critically low and that was the concern. My doctor gave me the appointment information for the hematologist and then got off the phone.
As an ICU nurse, I knew that a low neutrophil count was bad news. Hematology is not my specialty though. I knew that if a patient had a neutrophil count that low, we would consult a hematologist and then it was really out of our hands. So I turned to Google. Basically Google gave me three options: HIV, a virus, or leukemia. I hoped and prayed it was just a virus. I was a little concerned about HIV. I thought it unlikely, but honestly, you never know what all you come in contact with as a nurse. Visions of my glove breaking, my patients throwing up on me, taking an IV or line out and having some blood splatter flashed through my head….. All minute, unlikely ways of catching HIV, but that was the only way I could think that I might have gotten it. And then leukemia. I hoped and prayed it wasn’t leukemia.
In the middle of my Google search, my gynecologist called me back. She had spoken with the hematologist and he wanted me to come in to the ER. Now. he wanted the labwork repeated. She asked me how soon I could get to the ER. I told her I could be there in 45 minutes or less. I hung up the phone and burst into tears. This was bad. It was really bad. I called my husband and he was on his way to work. I told him what was going on and he said he’d meet me at the ER. He tried to reassure me that it was fine. I knew it wasn’t fine. I hoped it was, but I felt in my gut that it wasn’t.
Now I had to call my parents. So I pulled myself together and forced myself to sound normal. I told them that my GYN needed me to come back and have some labs repeated. No big deal. My GYN thought the labs done at her office were contaminated. I told them I’d call them when I was done and maybe we could meet later that afternoon. They said that was fine and to keep them posted.
When I got to the ER, I was a nervous wreck. I signed in, explained the situation and sat down in the waiting room. The ER was mostly empty, so they called my name quickly. The triage nurse asked me to have a seat and then asked me for my complaint. I told her my GYN wanted me to come in and have my labs redrawn. The nurse looked at me disbelievingly. She said, ‘And you couldn’t have this done at the doctor’s office?’
I said, ‘No, she told me to come straight to the ER.’
The nurse rolled her eyes and started typing on the computer. Tears started to leak out of my eyes, but I was trying to keep it under control. She took my blood pressure and it was really high, 176/90. I usually run about 120/75 or less. She asked if I had issues with my blood pressure. I told her no, but I was upset and pretty stressed out. She said, ‘It’s just labs. It’s not that big of a deal. I’m sure you’ll be fine.’ I wish I could go back and see her now to show her just how big of a deal it was.
I said, ‘My neutrophil count is critically low.’ That was met with a blank look. I tried again, ‘That’s a marker for leukemia.’ Nothing from her. I said, ‘I had cancer when I was 26. It’s a scary thought that I might have it again.’
She said, ‘I’m sure it’s fine.’ And then called for a tech to show me to my room.
Before my new nurse could even take my vital signs, my husband, Rob, was there. I cried and told him what the lab work could mean. He held me and said, ‘Let’s just wait and see. Maybe it was a mistake.’ I hoped and prayed that it was.
The nurse came in and took my vital signs and drew blood. I asked if I could have something to eat. Since I was going to meet my parents for lunch, I had only eaten a small cereal bar. The nurse told me I could have a small amount of sprite, but hold off on food in case they needed to do a CT.
Rob and I sat in the room and waited for my labs. The nurse finally came back in and gave me my lab results. My neutrophil count was even lower than three days ago at my GYN’s office. She told me I would be admitted to the hospital and told me we were waiting on a room. She called bed placement from my room and I overheard my diagnosis. ‘Unconfirmed Leukemia.’ It might not have been ‘unconfirmed,’ but it was something similar. All I heard was ‘Leukemia.’ When she hung up the phone, I said, ‘I have leukemia?!’
She looked at me and said, ‘We’re waiting on the doctor to confirm it.’ I turned to Rob and he reached out to me. We held each other and cried while the nurse stepped out.
The doctor came in not long afterwards. He started telling me the treatment for my leukemia. I interrupted and said, ‘So you’re sure then? I really have leukemia.’ He looked at me and Rob and was obviously uncomfortable. Apparently someone was supposed to have told me this already. He said, ‘From the information we have available, yes, I believe you have leukemia. I would like to admit you for more testing to be sure and to determine the type.’ He told us he was sorry and that he would see me once I was admitted. Then he left the room.
Rob and I held each other and cried some more. We didn’t know what to do. Eventually I had to get myself together enough to call my parents. I told them I was being admitted for more tests. I didn’t tell them the diagnosis. My mom asked if they should come over that night. I told her there was no need, we were fine, but they should come over the next day.
Soon the ER nurses changed shifts and my new nurse took me up to the Blood and Marrow Unit. It’s a specialty unit for leukemia patients. What I didn’t know, was that I was in one of the best hospitals in the world for my diagnosis. I cried the entire way to my new room. I got in the room, moved myself to the bed and then I cried some more. I can’t remember who my nurse was that first night. I couldn’t focus on anyone.Someone came and took me for a chest x-ray. Someone else took me for a CT scan. Finally, after the CT, I could eat.
Rob went to get my food from the McDonald’s downstairs because that was all that was open. And then he stayed with me that night and every single night after. The couch folded out into a bed. Our room had a view of the city. As it turned out, we were really lucky to get such a good room. As we later found out, some rooms didn’t have a couch and some rooms faced other buildings. Around 11pm that first night, my nurse told me she could give me a sleeping pill if I needed it. I declined. Instead I asked for Tylenol or Advil for my splitting headache.That’s when I learned I couldn’t take Tylenol or Advil any more. Tramadol would be my new option for pain medicine. So I took one Tramadol and went soundly to sleep.
The next day was a busy one. The IV team came in and put in a PICC line (a large IV with three ports to infuse medication and fluids). My parents drove over while I was getting the PICC line. My mom told me later she knew it was more serious than I was letting on when she heard I was getting a PICC. Physical therapy and occupational therapy came in. I brushed them off. What did I need with PT and OT? I was a normal functioning person up until the day before. The nurse practioner came in and they did a bone marrow biopsy. I’ve assisted with those throughout my years of nursing, but they are typically done on unconscious patients. When one was done on me, I discovered a bone marrow biopsy is horribly painful. I did slow and deep breathing. I tried relaxing imagery. And I cried again. Nothing can take your mind away from that kind of pain.
After the bone marrow biopsy, my parents finally got to come in and see me. I broke the news to them. My mom cried. I cried with her. When I had small intestinal cancer, I wouldn’t let her cry in front of me. With that cancer, I had had abdominal surgery and crying was painful. I knew if she cried, I'd cry, so I set the hard rule of no crying in my presence. This time however, I told her she could cry all she wanted. And I cried some more too.
More people came in and interrupted the visit with my parents. Dietary came in and explained the special diet I would have to be on. The Neutropenic Diet. No alcohol, no fresh fruits or vegetables without them being thoroughly scrubbed by me. Certain cheeses were off limits, certain yogurts were off limits. The entire diet encompassed three pages of the new patient manual.
Next the leukemia coordinator came in. Her job was to tell me what to expect. Looking back on it now, I can tell you, no one can tell you what to expect. She explained how I would have to stay in isolation, even when I went home. I couldn’t go out in public. No grocery shopping or any other kind of shopping. No restaurants. No hanging out with large groups of people at all. I was confined to my home and the doctor’s office/clinic. People could visit me, but there were restrictions on that as well. She told Rob for the most part, he would need to follow the same rules so he didn't bring any germs home to me. Then she told him how important it was that he still get out and socialize though. That being a caretaker is hard and he would need breaks. I completely agreed with her. But then I cried again at the thought of Rob doing alone all the activities we'd planned to do together. Rob and I are a couple that enjoys each other's company. It was sad to think of either of us having to be alone.
When I had visitors in the hospital, they entered a small room before entering the unit. They put shoe covers on over their shoes, washed their hands, then put a blue paper gown over their clothes. If they had a cold, they weren’t allowed in. If they had allergies or a cough, they had to wear a mask, but visitation was discouraged. When I had visitors at home, I had to keep a distance. No touching, no hugging. No one could visit if they had been exposed to anyone with a cold. People with small children were discouraged. I couldn’t be around other people’s children or pets. It was the beginning of the loneliest year of my life.
The pharmacist came in and discussed the potential chemotherapy treatments I could have.When my labs and bone marrow biopsy results came back, I would start the induction chemo two days later. The chemo would wipe out my white blood count, which was why I was at such a huge risk for infection. I would lose my hair. There would be nausea, vomiting and diarrhea. It was terrifying, but I had no other options. The plan was to find a bone marrow donor but that was hard. If the donor didn’t match closely enough, it would potentially not work. They began the search as soon as they diagnosed the leukemia.
I broke the news to the rest of my family and friends. Everyone was in shock. I had seemed so healthy. There was an outpouring of love and support. Over the next three weeks that I was in the hospital, two walls of my room filled up with cards and well wishes. The cards would come in and I would tape them to the walls with medical tape. I had lots of visitors despite the inconvenience of the isolation equipment.
We celebrated our fourth wedding anniversary while I was in the hospital. I found small, inexpensive gifts on Amazon for Rob. I couldn't tell you now what I got him. I remember that we had hospital pizza for dinner. We dressed up (the unit would let me wear my own clothes as long as they were freshly laundered, Rob could avoid wearing an isolation gown with the same restrictions) in our favorite outfits. I wore a new faux leather jacket I'd bought the weekend before diagnosis. We pretended things were normal. My nurse disconnected my IV fluids so I could have more freedom. We laughed and hugged and held each other. And I threw up from the physical exertion. Otherwise it was a wonderful night.
Over the three weeks I spent in the hospital, I accepted my diagnosis as well as I could. I fought the nausea, vomiting and diarrhea. I walked a mile around the unit every day I felt up to it. The doctors and nurses told me to expect about a 30 day stay after chemo. By day 21, my white cells had started to rebound and that’s what the doctors were waiting on. I could go home! We packed up our stuff and nervously went home. We started our journey into the unknown and terrifying world of leukemia.