*Bryan is going to continue his reflection on his journey today here on the blog. He finished his last chemo treatment the week of Thanksgiving, and is starting to get his energy and “normal” feeling back. His last PET scan showed that the areas previously showing cancerous activity remained clear (Praise the Lord for that!), although they are watching some things in on one of his lungs which may just be an infection/negative reaction to one of the chemo drugs that he received. Continued prayers would be appreciated as we wait to figure out all of that!
As promised, I wanted to continue with the detail regarding my journey. My last post ended with the dark moments of June 2nd, where my diagnosis was officially confirmed by my amazing surgeon. I ended that post at that moment given its weight for me personally in my time of grace thus far. It certainly was simply the beginning of my grieving process as I continue to learn to deal with something that is generally not ideal. Today, I want to continue the timeline as there was so much that needed to occur yet before even beginning my actual physical battle with Hodgkin’s Lymphoma.
Friday, June 5th. My first official meeting with an oncologist. I am almost ashamed to admit I feared this day would come in my life far before it actually occurred, I just didn’t expect it to be quite this early in my life (who ever does, right?). Cancer is no stranger to my family and I’m sure almost everyone reading this can relate as it seems to be everywhere these days (Social media bias or true expansion in cancerous activity? Perhaps this would be an excellent topic for a future post…), but there is something far more real when you are actually sitting in that chair with the oncologist addressing you. I learned a lot at this meeting (I did my absolute best to do ZERO online research before knowing anything for certain and I highly advise this if you can enlist your self-restraint). We reviewed my likely staging, early indications showed a Stage 2 or 3, and I was further defined as a subtype “A” as I was non-symptomatic. This meant that I showed none of the typical physiological signs of Lymphoma. The oncologist then educated me about the options to combat Hodgkin’s Lymphoma after a brief history of the disease. He explained that most likely we would use Chemotherapy, with the potential add an element of radiation as needed, based on the effect of the chemotherapy regiment. I learned about several chemotherapy treatment options, ABVD, BEACOPP, Stanford V, all of which have been quite successful against Hodgkin’s Lymphoma since the early 70s (and earlier) especially with patients as “young” as me (although I fell in the “old” range for younger sufferers as it typically affects males aged 16-35). I learned about the likely temporary symptoms — hair loss, energy loss, nausea, immune system weakness, neuropathy, and more. I also learned about some potential long-term risks, sterility, being the most likely. I thanked the Lord that I was already blessed with two beautiful children when we came to this point, which is yet another example of how God had this all planned out for me far in advance. We also reviewed the potential to develop other cancers, Leukemia being the most common, but still quite rare. The oncologist then explained that before committing to a treatment plan, I would need to complete a barrage of tests in a relatively short time period in order to properly confirm staging and to ensure my body’s ability to handle a plan that would include a chemotherapy regiment. I was incredibly impressed with the bedside manner of this oncologist — you could feel his care and concern as we discussed every detail, no matter how important or unimportant it may have been. He dismissed us to the nurse, and I arranged the previously mentioned barrage of appointments.
Monday, June 8th. The “baseline” testing begins. First up, a MUGA heart scan. This was the simplest of the tests. A radioactive tracer is injected via IV and you sit for a while to allow it to get to the heart. Then you sit under the scanner as pictures are taken of your lower chambers of the heart as they are pumping. The objective of this test is to confirm that your heart can handle the potential treatment plan. I passed with flying heartbeats, and prepared for the next test.
Tuesday, June 9th. This was the day of my Pulmonary Function Test. This was actually quite a workout, even with my singing and running background. The objective of this test is to establish your lung health, as well as a baseline for future follow-up tests. In short, you hook up to a mouthpiece and perform several breathing exercises. Once I was done with the exercises (took about 40 minutes), I felt as if I had just completed Al’s Run. I was rewarded with the knowledge that I would begin my treatment plan with “Rock Star Lungs”. My confidence continued to gain traction after learning yet another area of my body was prepared for battle.
Wednesday, June 10th. I arrived at the facility for my PET Scan at 7:15 AM. As I was about to have the radioactive tracer injected via IV the tech came in (Marcus was his name–one of the few names I actually recall from the baseline testing as I was stuck here for a while), and let me know the scanning equipment was not properly functioning (of course!) and they had the manufacturer on the phone attempting to troubleshoot. While I was waiting, I could hear Marcus rescheduling all of the other patients for the day. At first, I couldn’t help but think about the fact that there were all of these other people dealing with a similarly scary situation and now they would also have to deal with delaying confirmation of their battle with cancer. Talk about adding insult to injury! After a moment of empathy, my brain quickly refocused to myself: ”if they are getting rescheduled before me, how long will I have to wait to get back in here?” I got up and went over to Marcus, and asked if I could tentatively reschedule. Luckily, he was able to get me in again just two days later, the same day as my final baseline test: the bone marrow biopsy. He then shared his doubt that the machine would be up and running today, so he suggested I head back to my day, and plan to come back in two days. However, I had a followup with my initial surgeon (from my lymph node removal) scheduled in this same building at noon, so I offered to wait in the building just in case the machine was fixed. He agreed, and I headed upstairs to my next stop, albeit four hours early. I checked in, asking if there was any chance I could be seen early, and was assured this was unlikely. So I decided to set up a temporary office site in the waiting area, and got to work. I worked in the waiting room for about 4 hours — no word from the PET tech — but I did hear quite the barrage of stories from the other visiting patients. My name was finally called about 40 minutes after my planned visit (why are doctors always so far behind?) and I walked in to meet my surgeon. After some personal chit-chat, I passed my inspection as all looked to be healing amazingly well.
Friday, June 12th. PET scan attempt number two and Bone Marrow Biopsy. All systems were go on arrival for the PET scan, and Marcus successfully injected the radioactive tracer. I was told to relax for 45 minutes or so while the tracer worked its way through my system. After some forced medication, I was walked into the scan room. The goal of this test is to establish the severity and staging of the cancer cells. The PET scanner is much “deeper” than the CT scan equipment–while the CT scan is a “donut” type scanner at about 1 foot deep, the PET scanner is a bit more like a cave with openings on each end, where at times your entire body is encapsulated. I was in the machine for about 30 minutes as images were captured. Once complete, I travelled home and got myself ready for my afternoon Bone Marrow biopsy. At this point, I’m beginning to personally feel a bit cavernous as I was unable to eat or drink anything for this procedure since 10 PM the previous evening. I was quite nervous about the biopsy as I had heard many horror stories about the pain of this procedure and I am happy to report that it was better than advertised. Outside of the discomfort after the biopsy procedure, the biggest annoyance during this procedure was the fact that there were several “students” there to “enjoy” the process of watching a massive needle be injected into my hip bone area.
Saturday, June 13th. My daughter, Madalyn’s, 3rd Birthday celebration. This was quite the emotional day for me as all of our family was together in one place. I thought this would be exactly what I needed as a distraction as I awaited word of our treatment plan and PET results. I was strong as the get-together began, distracting my thoughts with pleasantries and conversations with people who I love the most. However, as I began the prayer before mealtime, while saying words of thanks about our beautiful daughter and amazing family, I just couldn’t hold it together. My fears and insecurity were as evident as the tears in my eyes. I tried to fight through it, but could not get any proper function out of my neck and mouth muscles, so I dismissed myself as someone else finished the prayer. I escaped to my room upstairs, and continued my breakdown privately. How could I be so sad at such a happy event? As I prayed to God for strength in this moment, the answer was clearly given to me: I was fearful that I may not see my little girl grow up. I was terrified that I may not see Gavyn become a chivalrous man. I was frightened that I would not be there to support my beautiful wife through many more celebrations and challenges. So many deeply rooted fears that I had been ignoring and burying into the depths of my soul were excavated as I was surrounded by so much love. My privacy was unexpectedly interrupted, but by someone I least expected for such a moment: my dad. I love my dad greatly, but he has never been one to show emotion. Like many from previous generations, there was a massive attempt to never show weakness or emotion, and my dad typically demonstrated this knight-like armor of “cool”. Not in this moment. We shared tears and fears. We shared insecurities that had never been verbalized between us since the early 90s when our family fell apart. My stepdad joined the “party” after a few minutes, and furthered the depth of this moment. Yet another “tough” man who rarely showed emotion, and we continued the “bromance”. More fears. More confidence. More forgiveness. It was a beautiful moment that I will never forget. We wiped our tears and dusted off our smiles, and one by one, we re-joined the party to celebrate my daughter.
Wednesday, June 17th. Treatment plan day. This was my second visit to the oncologist, so my awareness of details was a bit less callous than my last visit. As I waited to see the doctor, I watched as countless other patients waited in fear. I took some time to “tour” the treatment area. While it had a gorgeous view and lighting, all I could see were other scared patients, looking lifeless in chairs as they received treatment. I noticed that the majority of people there were much more “experienced” than I was. There was a black cloud of doubt in this room. I had heard so many stories from staff and friends of how cancer patients and survivors were some of the most positive people they had ever met. This was definitely not evident in my experience, neither in the waiting room or the treatment room. I was guided to my meeting room, and the doctor shared the details of my PET results. In his opinion, I was confirmed as a stage 2A. He then shared his treatment plan suggestion: 6 cycles of chemotherapy to begin on Monday, June 22nd using the ABVD regiment. He shared the statistics on the survival rates using this regiment (generally in the 80% range). He also proposed I have a power port installed on that same day my treatment would begin(more on this later) in order to aid in safe administration of the toxic mix. I left with fears, but was happy to have an action plan with a generally positive prognosis.
Friday, June 19th. In order to be certain of my treatment plan and options, I arranged a meeting with a second oncologist, a Lymphoma specialist with quite the list of accomplishments. While I was incredibly comfortable with my first oncologist, I was not very comfortable with the facility, specifically in regards to the environment in the treatment room, but also in regards to some of the support staff I was supposed to be working with. Initially, the second oncologist provided a less than stellar first impression (we waited over two hours to see him). However, it was evident as to why this was the case pretty quickly. His experience, knowledge, and focus were top-notch, and he also had some interesting research-based insights for us that were not shared in our initial meetings with oncologist number 1. First, in regards to staging, he pointed out an area of my PET scan that was not mentioned in my first meeting with oncologist number 1 which could cause my staging consideration to be anywhere from a 2A to a 4A. He actually showed me the PET scan images showing the extent of the tumors in my chest and neck area. Although the technology amazed me, this was the first time I attached visual proof of my cancer, and could not believe the extend of the tumors. How could I not have noticed this sooner when it was this widespread? If my staging was a 4A, I would also have the opportunity to participate in a blind clinical trial, which would remove one of the more troublesome chemo drugs from the mix (Bleomycin) and replace it with a non-chemo drug (a drug that was able to differentiate cancer cells from healthy cells as defined by a cell marked with a trait referred to as “CD32”–which is found only in cancer cells) called Brentuximab. As he described this new drug (only approved by the FDA since 2011), I was quite excited about the potential for a future without cancer. I was currently scheduled to begin chemo with facility number 1 the following Monday — so just in case I selected facility #2, I scheduled my chemo to begin there for the following Tuesday. As we left the meeting, we received a quick tour of the facility and I was very pleased to see that the treatment area was a series of private “pods” or private rooms–which was very valuable to me as I was completely uncertain of how my chemo experience would be. If I was going to feel miserably, I would really prefer to experience my misery in privacy. Each little area also had a television w/ DVD player, another nice touch to provide some distraction during an unpleasant experience. I also noticed that many of the patients and staff there had a very positive demeanor. Smiles and appreciation were obvious everywhere I looked, despite the internal fears and pain that may have been occurring.
June 20th-21st. This was the weekend of debate, and it also happened to be Father’s Day weekend. During a weekend in which I normally would spend reflecting on the blessing of my fatherhood, instead, my mind overflowed with treatment planning decisions. Which facility should I work with? Should I sign up for the clinical trial? What if this non-chemo drug has an unknown long-term side effect that we have yet to learn about given its infancy stage? How could I choose someone other than oncologist #1, who had guided me through my initial shock, confusion, and fears? If I chose facility #2, would I be disappointing facility #1? I turned to some visualization techniques per the suggestion of one of my mentors, and began picturing defeating this cancer, and picturing what facility provided the strongest visualization of success. This exercise provided the answer I needed. No matter how much I felt connected to oncologist #1, victory seemed the clearest with facility #2. I kept my appointment for Monday to surgically install my power port at facility #1, but cancelled my scheduled chemo treatment for that same day. Knowing how stressed I was about the upcoming challenge, my amazing wife scheduled a massage for me this weekend as a bit of a “Father’s Day/Prepare for Chemo” surprise. I think the masseuse would have needed a week to get the stress out of my body!
Monday, June 22nd. Power Port Surgery Day. Given the level of toxicity of the chemo drugs, and given my plan to have 6 cycles of treatment (12 total treatments), both doctors suggested I avoid IV injection, and instead install a Power Port underneath my skin, about 2 inches below my right collarbone. This would provide excellent access to my bloodstream, and essentially eliminate any potential for severe skin burning during the treatment process. At this point, I am beginning to feel like a seasoned vet when it comes to surgical procedures, so my nervousness factor had approached zero as I received my pre-operative “cocktail”. However, as I approach the surgical area, the surgeon completing my brief procedure walked out with the power port and described the process one more time to Abby and I before moving forward. My nerves began to run rampant as I saw the hugeness of this thing, it was far larger than I expected, and despite the best efforts of the “calming cocktail”, my heart began to pound a bit. I looked at Abby, calmed myself, and decided that all I could do was trust God here, so I uttered a quick “let’s get this done”, kissed my lady, and got it done. Once complete, I was the proud owner of an internal power port — massively protruding from my upper chest region (far more than usual due to swelling).
I was now physically prepared to begin my battle with Hodgkin’s Lymphoma. I prayed for mental strength as I went to bed that night. I recall getting very little sleep and praying more than I think I’ve ever prayed before — for tomorrow was chemotherapy treatment number 1, and I wanted to be ready to conquer.
**More to come.
Looking for more?
Bryan’s Journey: Part Eight (Bryan’s Perspective)