It all started early March 2018. I felt a lump at the base of my neck on the left side. I refused to believe it was cancer. Online research provided me an alternative explanation: lipoma, a benign fat cell tumor. But, I was concerned. I touched it from time to time to check that it didn’t act cancerous. But, it did. One became two; two became three; three became four; four became five, the fifth under the right chin. Next, I notice that I am jaundiced and severely anemic. My gums went pale pink, needing blood transfusions pink. I ordered iron supplements but returned them, deciding to eat iron-rich foods instead. The final trigger came around Palm Sunday. I developed a severe pain in the upper left abdomen. Online research again provided me with an alternative explanation: diverticulitis, a gastric condition with lower abdominal pain. The pain level was at 9 out of 10 on Monday and Tuesday. I soldiered on. On Tuesday morning, my friend, Lauren Chon, saw my jaundiced, lifeless face and insisted on taking me to the doctor. She made an appointment with her internist for 4:15 Wednesday. A few weeks earlier, my brother-in-law, Bob Chan, gently suggested that I get health insurance. I had been opting out, being averse to the medical profession, believing I was performing a greater civic duty in paying Uncle Sam my penalty than feeding an already fat insurance company. I didn’t have the heart to ignore his loving plea, so within 24 hours, I was insured by Cigna/USHealth/Freedom Life Insurance (Fort Worth). I got my insurance card in the mail on Wednesday. I put it in my wallet and headed out to meet Lauren. Dr. Simon Lim, upon seeing my jaundiced face and bloated stomach, advised me to go to the nearest ER. Lauren and I headed to Baylor Carrollton off N. Josey and Hebron. There, the CT scan revealed that I had a ruptured spleen. They told me I should transfer to Baylor University Medical Center in downtown Dallas in case I needed an operation to get my spleen removed. I was put in an ambulance and taken to BUMC ER.
When I arrived, they could care less about my spleen. They already knew by then that I was suffering from two different forms of anemia: secondary anemia from my bleeding spleen, which was caused by the primary anemia, hemolytic anemia. The latter was caused by an autoimmune response: antibodies were destroying cancer cells and had dropped my hemoglobin level to a dangerous level. The spleen, responsible for eliminating red blood cell biowaste, in its effort to work overtime to meet the current demand, had enlarged and torn. The bleeding was limited, so the doctors dismissed it and did not 1) remove it, 2) use radiation by navigation (use of endoscopic scope) to sear off the torn area, or 3) treat it with drugs. Well, they did treat it with drugs when they gave me immunotherapy: prednisone, allopurinol (to prevent kidney stones from the uric acid accumulating from immune system response), and famotidine (Pepcid/antacid). After only one day of immunotherapy, I could feel the lymph nodes receding. I assumed the spleen was as well. But, I get ahead of myself. Let us return to the ER.
Putting their focus on my dual anemia, the doctors were eager to give me 2 and up to 4 units of blood. They take five hours to find a match because there were so many positives in my bloodwork. When they finally brought me my lifesource, it was 3:00am Thursday morning. Lauren steadfastly stayed by my side from the internist to Baylor Carrollton to BUMC. She finally agreed to go home after I received two units of blood that my body drank up like a man who had been wandering in the desert.
The next thing I remember is jolting awake in the ICU. I was wearing both my ID bracelet and a bright red bracelet marked “allergy” because at the Carrollton ER, I experienced an allergic reaction to the iodine dye used during the CT scan. I got welts under my chin and on my neck. In the ambulance, the EMT guys gave me a Motrin for the ride. I took it mindlessly because I assumed I had to. I developed an allergic reaction to the Motrin: a few welts above my lip. Well, I was experiencing my third allergic reaction in 24 hours during the platelet transfusion. The doctors had taken such care matching my blood but then gave me “mongrel” platelets even though for cancer patients irradiated platelets is the normal course of action and single donor platelets is an option as well. When I complained to the techs that I was feeling itchy, they offered to give me Benadryl and asked me to just keep going as I had received most of it already. I didn’t know I could say no. When it was done, I had a rash all over, and my face swelled so much that my right eye was swollen shut. The swelling did not go down for 36 hours or so. I looked like Frankenstein.
Another tech came in later that morning and checked my heart. At Baylor Carrollton, an ER staff asked me if I knew I had a heart murmur. The sonogram at BUMC revealed a strong heart - NO heart murmur. Hmmm.
A couple of hematology oncology specialists, Dr. Holmes (senior) and Dr. Hoof (junior) came to see me, and Dr. Holmes threw out the curious word, “curable”, in discussing my preliminary diagnosis of Aggressive Non-Hodgkins Diffuse Large B Cell Lymphoma. I perked up at that.
Later that afternoon, two doctors and two oncology nurses/techs came in to do a bone marrow biopsy. The biopsy was done by the junior doctor while the senior doctor supervised. The junior doctor, a white female, was superb. She applied local anesthesia on my left pelvic bone and drilled. I winced at that point. But, the pain was supposed to follow when they inserted a needle to extract the bone marrow. No anesthesia could be applied to the bone. The needle went in; no pain. “Are you ok?” “Yup.” I’m not trying to be brave. I didn’t feel any pain. Repeat of needle. Same question; same response. Bone sample broken off. Same question; same response. Bandage put on. Same question; same response. I did not feel pain during or after the biopsy. So God.
The next day, Dr. Smith, an infamously meticulous surgeon, was scheduled to remove one of my lymph nodes for biopsy. I was told before 2:00pm, but 2:00 came and went; then 4:00, but 4:00 came and went; then before 7:00. Well, before 7:00, a nurse mentioned to me that OR might be concerned that my blood sugar level was too down, so I took a couple of sips of apple juice that had been given to me. The anesthesiologist finally came at 6:45 to get me and hears that I had apple juice. She whispers, “Oh, no. Now, we have to intubate.” Great, my sips of apple juice just got me a tube down my throat for two hours because Dr. Smith is so meticulous that it takes him double the time it normally takes. Moreover, I forgot to mention to the anesthesiologist to go easy on the dose since I’m a 5’3” Asian female and the default dose is for a 175 pound white male. When I come out of the anesthesia, I have a rip-roaring headache, and my bladder is about to pop from all the saline I had been given. I had had a series of wonderful female nurses, but now I had a male nurse who could care less. He offers me a bedpan and throws wipes on my bed next to me. I figured if ever I should use a bedpan, post-op massive headache full bladder time was a good one. I place the bedpan under my bottom and proceed to wet the bed. Bucket list item - wet bed - check. I tell the nurse that I don’t think this is the way it’s supposed to go, and I end up walking into my bathroom and cleaning myself off. Payback - he had to clean up the mess. My friend Lauren who had shown up at the hospital to be with me for a third time now went to sweet-talk him so that he wouldn’t mistreat me during his shift. It worked. He was more professionally courteous after that. But, I was happy to get a sweet female nurse again in the morning.
Now came the waiting game. Good Friday, Saturday, Easter Sunday came and went with no news of a final diagnosis. By now, my research had uncovered that I have composite lymphoma, found only in 4% of lymphoma patients: 1) large cell in the lymphatic system on my left and right neck and left and right of my diaphragm = stage 4 and 2) small cell in my bone marrow. The doctors couldn’t finalize their diagnosis and treatment regimen because of the small cell lymphoma.
I was scheduled for a PET scan as a matter of course for staging purposes despite certainty of stage 4. No PET scans are done over the weekend, so I had to wait for an opening. Backlog of PET scans was done on Monday; I got squeezed in on Tuesday morning when there was a cancellation. Because of my iodine allergy, I had to drink two huge cups of magnesium “milkshake”. PET scan went off without a hitch. Back to my room for more waiting.
Port installation with Dr. Smith was scheduled for Wednesday. I was told 1:00pm, but Dr. Smith being Dr. Smith was taking a while with the surgery before mine. I finally got into the OR at nearly 5:00. He did get the port in in 1 hour and 7 minutes. This time, I self-advocated and told the anesthesiologist to go easy on the drink. They chose the least intrusive delivery - a tube at the base of my inner throat (not intubation) - and reduced the dose. I was wheeled back to my room around 8:00pm.
The next morning, I was told that they were still staining my small cells and trying to arrive at a final diagnosis. Given its lack, they couldn’t start me on chemo although R-CHOP was definitely going to be used to cure me of large cell lymphoma. They just didn’t know what to do about the small cell lymphoma.
I was discharged to wait the final diagnosis. Fortuitously, my friend, Janet Lees, who lives less than a mile away from me was visiting just at that time and was able to drive me home without my calling someone to come and get me. So God. I returned home to wait some more.