After being released from the hospital and receiving the good news regarding the clear PET scan on Friday, April 10, we spent the weekend reveling in the good news and smiling constantly. Although my neutrophil count (“ANC” = absolute neutrophil count) was too low at 0.6 to proceed with my last round of chemotherapy on the 10th, the good news of the clear PET was enough to overcome the bad news of the delay in treatment. We also were operating under the assumption that my ANC would rise quickly enough to be treated on Tuesday the 14th. After having a relaxing weekend of getting to play and snuggle with the girls and sleep in our bed, we returned to the cancer hospital on the 14th and did not think there was any real chance that my counts would not be high enough. Much to my dismay after having my port accessed and blood taken for labs and then waiting to meet with Megan (Dr. Park’s PA–Dr. Park was still on paternity leave), Megan delivered the unfortunate news that despite all of my other blood counts being good, my ANC had dropped to 0.3, which is classified as being severely neutropenic and again meant that I could not receive my infusion. Utterly frustrated, we talked with Elizabeth and Megan to discuss what to do next. Dr. Park had instructed them to set a follow up appointment for Friday for more labs and hopefully the infusion and instructed me not be in public if possible and if I did need to be in public to wear a mask.
The dropping ANC bewiledered me, setting off worries as to why they were dropping instead of rising like my inpatient and regular oncological team expected and over whether or not the delay in treatment, which was at one week at that point, would be impact my chances of successful treatment and likelihood of relapse. Before leaving the hospital, as I dorned my new mask, we stopped once more to talk to Megan and Elizabeth to try to get an answer as to why my ANC had dropped. They said that after doing some research and consulting with Dr. Park, that they assumed the neutropenia was a result of the Rituximab compounding in my system. Dr. Park still wanted to wait to see if my ANC would rise on its own, instead of giving me colony growth factor (CGF) to help it rise. Since I was receiving his opinion through intermediaries, I did not receive a full explanation as to why it was better for counts to rise on their own instead of with the assistance of the CGFs. With no good news or clarity in hand, we headed home, and I spent the ride researching Rituximab caused neutropenia and the effect of CGFs on the body and future chemotherapies. I found scholarly articles and research that verified that Rituximab has been known to cause neutropenia, but mainly in older patients, which verified my team’s assessment of my severe neutropenia and their surprise at it.
At Jason’s suggestion, Elizabeth set up a lab appointment for Thursday to be done at a labratory in Greensboro, so that we could have better managed expectations for Friday and know whether the planned trip to Chapel Hill for Friday would be necessary. I spent the rest of Tuesday and Wednesday working from home and otherwise confined within the four walls of our townhome. Being confined to the house only exacerbated my anxiety and frustration. By Thursday, the anticipation of the labs and desire to start treatment had me completely on edge. I went to the labratory hoping it would be a very quick trip without incident. In the same string of unfortunate circumstances I had dealt with over the course of the past few weeks that started with the hospitalization, the labratory appointment started in disastrous fashion. Upon signing in, the nurse informed me that they did not have any record of my appointment, despite the fact that I had received an emailed appointment confirmation from their system the night before, and I had a copy of the fax with the orders that Elizabeth had sent to them. I felt my blood pressure rising and my frustration intensifiying. I asked the nurse if I could email her a copy of the doctor’s order, and she responded saying that she needed the original order, not just an emailed copy. Because she had already told me that they didn’t have the fax, which indicated a copy would have been sufficient, and therefore her assertion that an original signed order was necessary was completely false. Her false statement on top of the missing order and appointment pushed me from frustrated to angry.
The nurse said she’d check all of their fax machines again while I called my team to get another order faxed. In the midst of dealing with all of this and trying to apprise Jason of the situation, a woman sitting with her elderly family member across the waiting room from me, yells in an obnoxious tone across the room at me, “Ma’am, are you sick? I see you’re wearing a mask.” In shock at her tone and lack of couth, I stopped emailing briefly to look across at this monster yelling at me. As I looked up at her, I felt myself snarling as I responded, “No, I have cancer.”, to which her reply was, “Oh good. You couldn’t be here around my so-and-so if you were sick.” I said, “well that’s not an issue, and I can’t be around sick people either.” I assumed this would be the end of the conversation, and I could return to solving the lab issue at hand; however, this woman apparently either didn’t see the snarl on my face nor detect the tone in my voice indicating I was not intersted in any futher conversation with her at that moment or she didn’t care, and proceeded to open up her jacket to show me that she had had a mascectomy of one breast and tell me that she had breast cancer at one point. Despite only a murmur from me of something along the lines of “That’s awful. I’m sorry. “, she continued to talk at me and say “But I didn’t have to go through chemotherapy or anything like you’re apparently having to do.” Again shocked, I uttered some response while still proceeding to call to my oncology team. She didn’t stray from her complete disregard for social cues or courtesy as I sat on the phone making calls and sending emails; this woman proceeded to next tell me about another relative of hers that had battled lymphoma and died from it, but was kind enough to assure me that she thought I would have a better outcome. Finally, one of the nurses saved me from informing the woman of her inappropriate mannerisms, and called me to the desk to inform me they received the fax from my oncologist and would proceed with the blood draw.
My relief was short-lived as I found out that the lab had a four hour turn around time on delivering CBC with differentials results to my oncologist. Since sorting out the lost orders had taken about 45 minutes, they were not sure if they would have them to my team by the end of the day. I kept my phone near me for the rest of the day, hoping to get an email from my team with results and be able to know what to expect Friday. We watched the Rangers game and then went to bed without results. We got up bright and early Friday morning and left for Chapel Hill. My anxiety and fears were justified about half way into the 50 minute drive when Elizabeth called to tell my she had finally gotten the results and my ANC was only up to 0.4. She said that there was no need for me to come over Friday with an ANC that low, and that she would be discussing the possibility of giving me CGFs with the head of the clincial trial because they required special approval to do so and with Dr. Park. I was again left in limbo waiting to find out the clinical trial’s decision and waiting impatiently for my neutrophil count to rise, which made me feel completely helpless and therefore frustrated and irritable. Rationally, I knew I should trust my team’s judgment, but because they were surprised by my severe neutropenia and slow recovery and because I was only hearing Dr. Park’s opinions through others, I continually questioned their approach to my neutropenia and fell victim to my desire for control.
The past two weeks have been the most emotionally challenging that I’ve experienced since being diagnosed. The high fevers, not knowing the cause of them, and the hospitalization brought out some of the deepest and darkest fears of battling cancer and made me actively face those. Those things followed by the ordered isolation with the severe neutropenia enhanced the feelings of helplessness, isolation, and loneliness. Since being discharged from the hospital and ordered to isolate myself, I tried to distract myself with work and remaining healthy otherwise, but did not have the success with that as I had previously. The fear and frustration would quickly boil to anger, which is a feeling I detest having and worked hard to redirect to better and more appropriate emotions. Fortunately, Matt and Jo got into town Friday night and Jamie on Saturday night, and they were exactly what I needed to feel better and not focus on my neutrophil counts or the decisions and plans of my team. My mood was almost instantly lifted upon their arrival, and made the weekend fly by while playing games, cooking and eating, and enjoying spending time together.
This morning, Jason, Jamie, and I packed our day bags again for the hospital. I left my work bag at home thinking that there was no way my counts would rise from 0.4 on Friday to the requisite 1.0 today, so I could proceed with my last infusion. After labs, we came straight up to the third floor (infusion floor) and after a few minutes of waiting were taken back to my chair. I couldn’t decide if this was a good omen or a bad one and felt something more like showing a child a toy then taking it away. We sat listening to the nurses hoping to hear news of my CBC results. Finally, I saw Elizabeth stop by the nurses’ desk, and Jason heard her say that my ANC was 1.4. She came over with the biggest and loveliest smile and told me that my ANC was in fact 1.4 and that all of my other counts looked good, so we would be proceeding with treatment after Megan and Dr. Park came up to see me. Megan first then Dr. Park. He said that he was still very pleased that my scan was clear and that it was very unusual that I had developed the severe neutropenia and that he thought it was from the Rituximab compounding in my system through the first three rounds of chemotherapy. He also informed me that he thinks my chance of relapsing would be less than 10% and that I can have my port removed after my counts recover in the next month or so. We also decided that I will come back for a CGF shot on Wednesday to help my counts recover and hopefully prevent neutropenia with this round. We finally discussed my follow up PET scans, which will occur in three months, six months, then at six months intervals until I reach two years of remission and then become yearly. Once Dr. Park signed off on my orders, we started the infusion around 11:30 today. It went very smoothly and ended with my team singing “She’s a jolly good fellow” and with me ringing the bell and crying finally releasing every emotion, good and bad, that I’ve had over the past five months. I am not sure how to properly describe the feeling of walking out of the cancer hospital a few minutes ago knowing that I have completed my treatment. I know that I have to get through these next 20 days of this round, being especially careful to avoid sickness and then will start the many months of recovery waiting for the long and late term effects of chemotherapy to appear (or hopefully not). I will learn how to start healing and becoming a cancer patient in remission. I anticipate that that phase will bring its own challenge as I approach the desired 2 year “durable remission” mark, but I will take those days as they come. Although when thinking about all of this, I often think that I have done nothing to get to this point and that Dr. Park and the rest of my team deserve all of the credit for their diligence, intelligence, and compassion, tonight I will admire my certificate and celebrate my “accomplishment” of making it through this last infusion.
finally ringing the bell! (excuse the terrible angle )