From Pain and Anxiety to Resolution, Clarity, and Thankfulness: Choosing My Oncologist/Hematologist

Last Tuesday was an exhausting day. Less than 24 hours after I had the port placement surgery, we were up early to go UNC Chapel Hill to meet with Dr. Park (Director of Lymphoma Program and focusing on Non-Hodgkins Lymphoma) for a second opinion and to determine who I would choose to be my primary hematologist/oncologist. I was referred to Dr. Park through a dear friend who reached out to her cousin who is a doctor in the cancer field and contacted Dr. Sharpless (director of the UNC Lineberger Comprehensive Cancer Center). Dr. Sharpless provided recommnedations for the most reputable doctors specializing in lymphoma in North Carolina, and he faciliated my appointment with Dr. Park. Jason and I had discussed our thoughts on which institution and doctor we would choose if there was a difference in option. Based on our research, on the recommendations from our friend and her cousin, and on discussions with my brother, we had predetermined that we would use UNC in that event.

I was looking forward to meeting with Dr. Park, and as we walked into the North Carolina Cancer Hospital, which is in the middle of several UNC hospitals, that sense was amplified knowing that I was walking into one of the premier cancer research and treatment centers in the country to meet with such a highly esteemed doctor. The Cancer Hospital has multiple stories, and we first checked in at the registration desk where I was given a form that had a numbered list of the stops I would make that day. After registering in admissions and getting my UNC Cancer patient ID card, we went upstairs to meet with Dr. Park. I first met with a nurse (Diemetrick) to have my vitals taken, and Diemetrick noted that my blood pressure was high and told me take a woosah moment and some deep breaths and made me relax and got my blood pressure down to a more normal level. Small words and actions of medical staff like that showing compassion and empathy are something that I’ve realized I greatly appreciate. When we were taken back to one of the examination rooms, we first met a nurse and then with Dr. Beckman, who is one of Dr. Park’s fellows, and she had me give my story of discovery of the abnormal lymph nodes, my symptoms (lack thereof), and appointments/procedures I had had thus far, which she said would give her a better understanding of what she had read in my records, and she gave me a quick exam. She was very conversational, and I felt very comfortable talking to her, almost like talking to a friend who is a doctor. She then went and got Dr. Park, and he came in and also got a quick background and discussed what he saw on my scans and in my other records. He also said that the lymphoma is limited to mainly my left supraclavicular region, but noted that he saw some “active cells” in my chest on the PET scan, but none that he said he would conclusively say are cancerous nodes, but even with that said that he would classify it as limited region to the area above my diaphragm, early stage NHL. When Jason and I asked which stage he would classify it, he responded that he prefers to look at it as more “early or advanced” than in the 1-4 scale, but if putting a number on it, he would classify it as stage 2 in the line of caution and conservatism and noted that calling it 1 or 2 does not change the treatment, because the limited region and location are the more important factors. Dr. Park also discussed that he was having further tests done on my cells from the node take out during the excisional biopsy to give more comprehensive information on the cancer, one additional factor is the subtype, which again will not really change the treatment plan, but will be useful in his understanding of my cancer and research. He also explained that he and the Lineberger philosophy is to be more test heavy under the ideals understanding and to further research, which I expected based on my brother’s explanation of the difference in research institutions and for-profit hospitals. This was a huge plus in my book, because it aligns with my preference for full knowledge and understanding of an issue prior to determining a course of action and solution.

Finally, Dr. Park told us his recommendations for treatment: a traditional treatment method and a clinical trial. The traditional treatment is the standard six rounds of R-CHOP, which is the most proven method of treatment for DLBCL. He explained that he would not recommend doing the 3 rounds of R-CHOP plus radiation as Dr. Gorsuch had recommended. He explained that he wants to avoid treating me with radiation unless my cancer is not responsive to the chemotherapy, because he estimates that the exposure to radiation will quadruple or quintuple my risk of breast cancer down the road. The second option for treatment is a clinical trial for which I qualify, which is PET-directed therapy treatment for limited stage DLBCL patients. If participating in the trial, I will complete three rounds of R-CHOP then have a PET/CT scan during days 15-18 of round 3 to check the responsiveness of my cancer to chemotherapy. If I have a complete response and the PET scan is negative, I will complete only one more round of R-CHOP. If I have a partial response to chemotherapy, I will undergo involved-field radiotherapy (IFRT) 5 times per week for approximately 4-5 weeks. Park was frank with me and said that if, as he expects, my cancer is responsive to chemo and my PET scan is negative after three rounds I will go through the fourth round of chemo. However if for some reason my cancer is not responsive to chemo after three rounds, by participating in the clinical trial, we will have the option to determine if it will be better for me to undergo the IFRT or opt out of the clinical trial and complete the traditional six rounds of R-CHOP. He acknowledged that if it is the scenario where I opt out of the trial, that doing so cuts against the purpose of the research portion of the clinical trial, but he put my health and well-being first and said that he will evaluate the responsiveness at that point and determine whether continuing chemotherapy or undergoing radiation will provide the best likelihood of achieving remission. He also explained one of purposes of the clinical trial is to determine the necessity of the exposure to the toxicity of chemotherapy through the additional two rounds of R-CHOP (4 vs. 6 rounds) as it relates to the efficacy of treatment of limited stage DLBCL. Our conversation with Dr. Park was much quicker while still thorough, because we had already been through the same conversation with Dr. Gorsuch and had substantial knowledge of my cancer and the treatment options, and mainly wanted his opinion and to see his bedside manner. By the end of the conversation, Jason and I were both confident that in Dr. Park’s background and treatment recommendations and recognized the value of me being treated at UNC due to its resources as a research and academic institution.  I told him I was ready to move forth with setting a start date for chemo.

In setting the date, we talked about the fertility preservation, and Dr. Park estimated that my risk of infertility is only about 10-20%, which is substantially less than what Jason and I believed after meeting with Dr. Fritz the previous Friday, who led us to believe that it was a substantial risk. Irrespective of the number put on the likelihood of infertility, it is enough of a risk in my and Jason’s opinions and in the eyes of Dr. Park and Dr. Fritz, that taking preservation measures are important and advisable. Dr. Park also thought that taking the two more weeks to complete my fertility preservation was not detrimental to my treatment plan or prognosis and something that I should complete. We concluded the meeting with Dr. Park and Dr. Beckman by setting my first round of chemo to start on February 3. Dr. Park then had us meet with Jim McGowan who is his and now my Nurse Navigator. Jim has a kindness to him that was abundant and apparent through words, mannerisms and eyes during his explanation of my treatment plan, expectations for infusion days, side effects of chemo, and available resources. He then took us to meet the scheduling nurse Michael, and then took me to the blood work lab, which is adjacent to the hematology/oncology department to have blood drawn for evaluative purposes to help Dr. Park set my chemo levels.

While I was waiting to have my blood drawn, the difference in opinion hit, and I had waves of anxiety and felt overwhelmed, which I relayed to Jason. He, on the other hand, responded with “I feel good about this” and was certain Dr. Park was the right choice. My anxiety was likely due to my low blood sugar and hunger (it was almost 2:00pm by this point and I had only had my 100 calorie skyr for breakfast) and to needing time to digest the new information from Dr. Park on the risks of radiation and possible lengthening of my chemo time. I also was anticipating the next appointment of the day with Dr. Fritz where we would meet with one of my nurses to learn about administering my hormone shots and test my estradiol levels and have a vaginal ultrasound done, which is a lot to handle especially the day after surgery where I was still in considerable pain with my new port and only taking half of the pain medication, so I wouldn’t be too loopy while making important decisions. My anxiety fortunately didn’t last for too many more hours. The appointment at UNC Fertility went very smoothly. I even found a point of comedic relief when I went back for my ultrasound and made Jason come back with me, because I didn’t realize it was a vaginal ultrasound. When one of Dr. Fritz’s colleagues came in to do the ultrasound and pulled up this about 18 inch long wand and asked if I had ever had a vaginal ultrasound, I responded no and looked over at Jason and had to resist urges to embrace my twelve year old boy sense of humor and start giggling when looking at Jason sitting very uncomfortably across from me as the doctor starts the ultrasound. It became even funnier to me as he did the ultrasound, because he had a hard time seeing my ovaries in part because I’ve been on continuous birth control for the past eight years and otherwise because the anesthesia from the day before and pain medications cause constipation, so the doctor kept mentioning my bowels blocking the view of my ovaries (again my immature humor).

Immediately after leaving UNC Fertility, I also had the chance to speak with Dr. Earp who is the director of UNC Cancer Care and had been given my contact information and story from another one of my dearest friends. He had reached out to me over the previous 36 hours leaving a voicemail and offering to provide any assistance I needed in being referred to an appropriate doctor, determining my treatment plan, and providing any other support I need. At that moment, he was exactly the person I needed. He confirmed that Dr. Park is absolutely the best doctor to provide my treatment and confirmed that all of the steps I’ve taken through diagnosis, developing a plan, and being well informed are what will allow me to come through this successfully and are what he would have recommended I do. His vigilance in helping others, and in this case me, and caring nature were abundant and apparent. He ended the conversation by mentioning that he was impressed with my maturity, rationality, and calmness despite dealing with such a diagnosis (although that was not what I had felt for the past few hours), and that those qualities would help make my treatment even more successful. He also told me to call him on his office or cell phones at any point during my journey and that he will do anything he can to help me. His voice and affirmation were exactly what I needed at that moment. It brought me back down from the heights of anxiousness and to feeling like myself and gave me clarity and confidence in my choice. It also reminded me that I am incredibly fortunate to have such an amazing network of friends and family and treatment team behind me. Although I don’t think there is any way to explain or understand why I got cancer, there is only good that will come from this, and it inspires me to do more in showing others the same love and compassion I’m receiving constantly and to help others.

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One thought on “From Pain and Anxiety to Resolution, Clarity, and Thankfulness: Choosing My Oncologist/Hematologist

  • Stephen Karaffa

    Your sense of humor is very reassuring in that I am sure you will defeat this. Of course I think you were very kind to Jason and not mention he passed out during your vaginal ultrasound. When reading this description I have to admit, I could picture Jason’s face during the procedure. Sorry “J”, I had to laugh a little. As one southern friend that you know mentioned lately, kind of like we are kin when the north meets the south. Our prayers and thoughts are with you and Jason! Kick ass!!!!!!