Days before I went on vacation, I learned that my blood cancer might have progressed to a more aggressive disease.
I was diagnosed with an incurable blood cancer 13 years ago. It’s been a journey for me and my family. Faith in God gives me the courage to live with uncertainty. I would like to share a story that happened to me recently.
I began to feel tired…really tired. I typically don’t nap, but I couldn’t seem to get through the day without one. I would wake up and my husband would say, “You’ve been sleeping for over two hours!” I was also thirstier than usual. I should have known something was wrong. I continued to push myself, though I was feeling a little worse each day.
The next week, we were supposed to leave for a vacation. I began to notice not only did I feel exhausted, but I started to feel like I was having trouble walking …my knees just weren’t working right. I was feeling muscle weakness. I told my husband that I didn’t think I could go away. I called my oncologist and told him. My doctor couldn’t see me, but he said I could come in for bloodwork before I left. I went the next morning.
That same day, my doctor called and said, “I know what your problem is. Your calcium is out of control! It’s 14 and it should be under 10.” He had already ordered a 15-minute infusion for me and told me to come to the infusion center that same day, Wednesday afternoon. My doctor explained that the Zometa infusion should bring the calcium down to normal by Friday. We were supposed to leave on Sunday.
On Friday, my blood was drawn once again to see if the infusion was working. It was already down to 11 and my doctor said by Sunday it will be 9. He advised me to go on my trip. When I got back my calcium levels would be rechecked and then we would have to figure out what caused this. The calcium hike might have been a blessing in disguise.
I began to feel much better.The bloodwork showed that my levels stabilized. My doctor ordered a CT scan first. He already ruled out a parathyroid gland problem and sarcoidosis. We set up an appointment to go over the results. He brought up the scan on his computer and he showed how my small lymphocytic lymphoma (SLL) has progressed. He showed me larger lymph nodes, new ones in different areas, and more of them. He then prepared me for what he thought was really happening. He gently said there is a possibility that your disease is not progressing but rather transforming into large B-cell lymphoma, which is more aggressive. If this is the case, he said it will require full-blown chemotherapy treatment. If not, it will mean the SLL is progressing and then you would start an oral chemo pill, a BTK inhibitor.
I now needed a PET scan. “After we pinpoint the biggest lymph node, we will do a biopsy to confirm a diagnosis.”
I was worried, but I knew I wanted to survive. I would do whatever he told me to do. In the meantime, I told my close friends who I knew would pray for me, along with my family. My daughter was in Israel at the time. She made a point of going to the Western Wall where many Jewish people go to put a note to God in the cracks between the huge stones. She called to tell me about the healing prayer she left there.
After the PET scan, my doctor said he would call me in a day or so to let me know when he could schedule the biopsy. I said to my husband, “I don’t mind getting this call. It’s the next one that worries me. The next one will be to give me the results.
On Monday morning the phone rang. It was my doctor. I was sure he was just calling me to tell me the date and time of the biopsy, but when I answered he said in a cheerful voice, “Great news!”
“What does that mean? Is the biopsy tomorrow?”
He quickly responded, “No, there won’t be a biopsy!” I had no idea what that meant. He explained that the metabolic activity was about the same on all of the lymph nodes. There was no “hot” lymph node to be found! This meant that it was my SLL. I was lucky that all I needed was to take the oral pill.
I began taking Calquence (acalabrutinib) every 12 hours and it was like a miracle drug. My enlarged lymph nodes began to “melt away.” My doctor told me at my next appointment that he truly believed my disease had changed to a more aggressive type of lymphoma. He said it didn’t make any sense to him. He was shocked.
I simply shook my head and thought to myself —Of course, it makes sense. The doctor had no idea how many people were praying for me and thankfully, their prayers were answered!
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