Sunday, February 07. 2021 - Super Bowl Sunday, I went to the ER for a pain in my right lower abdomen under my rib cage, thinking I might have a pulmonary embolism. So to check that out, I underwent a CT (scan #1) of my chest and top abdomen and ultrasound (scan #2) to rule out PE or gallbladder. After a couple of hours, I got the results: no PE and nothing wrong with the gallbladder. What I got instead was three sentences on a discharge document:
ER Report 02-07-21 Impression "3 Sentences"
- Osseous metastatic disease with new T5 vertebral body lesion demonstrating epidural tumor extension.
- New lung nodules consistent with metastatic disease.
- Small right pleural effusion. Nodularity along the major fissure. Findings concerning for malignant effusion,
What followed was a TIDAL WAVE of EMOTION - WHAT? - YOU HAVE TO BE KIDDING ME. After several choice cuss words and a few hours of not being able to comprehend these 3 sentences, I sat down and wrote an email to my Oncology/Cancer team, letting them know I was in the ER and got 3 sentences on a discharge document and asking if we could meet.
Monday, February 08, 2021 - 9am, a call from the Sibley Patient Oncology Navigator, said my email to Dr. Smith (Oncologist) was emailed to the entire cancer team and they will get me in this week and set up scans and more tests in the next hours. Later that day, I had 2 meetings and an MRI scheduled all during COVID-19. My cancer team had rallied around me, and I was truly humbled.
Wednesday, February 10, 2021 - Meeting #1 Dr. Croog, Radiation Oncologist. She is one of my favorite doctors, because she tells it straight up. She opened the exam room door and said "What the Fuck! You are one of the most memorable patients in recent history; I was really bummed when I saw this." She said plain and simple, this is a chronic condition with no cure, we will run additional scans and a biopsy to confirm what we see in the CT. She shared the CT images (this was my first time seeing them), and I had wondered why my first appointment was with my radiation oncologist. Biggest concern is item #1 on the discharge doc. There is a 2.5ish cm tumor on my spine around T5 vertebrae that is 3mm from my spinal cord. The MRI scheduled for tomorrow would look to see if the tumor is pressing on the spinal cord. I also signed a consent form to start the process of dosing the tumor in the likelihood I would perform radiation at Sibley.
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| Scan #1 CT of Chest, Tumor at T5 left portion of spine (purple area) |
Wednesday, February 10, 2021 - Meeting #2 Dr. Smith, Oncologist. We mostly talked about similar things, but scheduled a number of new additional MRIs, Bone Scan and a Bone Biopsy. Dr. Smith was also going to reach out to John Hopkins spine tumor board for guidance. We talked about changing the medicine regiment and how new medicines are allowing more people to live longer and that the goal was years not months. First step was to get bone biopsy and confirm findings, if indeed breast cancer cells of ER+ / HER2- was growing in my spine or some new cancer, and then we would reconvene.
I had the outcome of the ER discharge document. I had a tumor on my spine and likely cancer in my lungs, two common places breast cancer invades too. I had to complete a bunch of scans, and then discuss the findings. I was proud of myself that I was on the ground running, an awesome cancer team that had rallied around me and that I had courage and strength from 9 months of treatment before to approach this new mountain with those skills. But, it was all tiring and I started to build space into my day allowing time for rest, crying, concentration and discussion, as there would be a total of 22 appointments, of which 11 of them were scans, my calendar was going to blow up. Below is my February calendar of appointments and how I found a way to Hammer On!
Thursday, February 09, 2021 -
Scan #3 - CT Simulation with Dr. Croog. I had been through this before, you lay down with arms over your head, they build a bag around your body, take some pictures of the spine and place some permeant tattoos on your body. This scan allows the team to dose the tumor, and understand if they can deliver radiation to the tumor without damaging surrounding good tissue.
Scan #4 - MRI of thoracic spine. This was a 45-minute scan with contrast to understand if the tumor was pressing on my spinal cord or other areas. Now, over the last 3 years since starting chemo I had been attending a Mediation class for cancer patients through Sibley, so laying still in the MRI was just like an extended mediation session.
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| Scan #4 - MRI at Sibley, don't forget to take the wire out of the mask! |
Wednesday, February 17, 2021 - Scan #5 - CT of lower abdomen with contrast. This was to rule out if there was any cancer growth below the diaphragm. Piece of cake, but I had to drink this wonderful clear fluid, yuck!
Thursday, February 18, 2021 - Scan #6 - CT guided bone biopsy. This was an all day event, and we had to travel through a snow storm to JH Suburban Hospital because they had the quickest appointment. The fun thing was they had trouble getting an IV in so, the doctor who performed the biopsy used an ultrasound to insert a 6" IV into my arm. It was totally MacGyver as I could see by the nurses as they looked on, but I couldn't see anything. The bone biopsy was painless, just some heavy pressure.
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| Scan #6 - CT guided biopsy |
Friday, February 19, 2021 - Video Conference - Dr. Sang, Spine Surgeon at John Hopkins Baltimore works in parallel with Dr. Redmond. There was a new development on the day before. JH had a spine tumor conference and had discussed my case. My tumor was in the gray area, but with JH CyberKnife radiation (a more exact radiation) they could get deliver precise treatment and save me a major surgery. The radiation at Sibley could not target the tumor without more damage to surrounding tissue, so that was off the table.
Monday, February 22, 2021 - Video Conference - Dr. Redmond, CyberKnife Radiation JH Baltimore. I met her team and we went over my case as discussed a few days before. CyberKnife Radiation is a robotic precision radiotherapy. Our next steps were to come to Baltimore and do another round of scans go from there. They asked me several times if I was claustrophobic... I signed a consent form for radiation.
Wednesday, February 24, 2021 - Xgeva Bone Shot. New meds: this shot will strengthen my bones, and I will get it every 4 weeks with blood tests in between for the rest of my life. The shot was really easy, but I had to sit in a treatment chair in Oncology. That wrecked my nerves because last time I sat there was 2 years ago for chemo.
Thursday, February 25, 2021 -
Scan #7 - CT Simulation with Dr. Redmond. Going into this scan, I had thought to myself how they may try to secure me and I got my answer... by a custom-molded mask that was bolted to the table of course. What an interesting experience that was. They draped this moist towel-like material over me and as it cooled and expanded, I could see again. I now knew why why they asked several times if I was claustrophobic.... again it was just like an extended mediation for me.
Scan #8 - MRI with Dr. Redmond. This was the first time in a MRI at JH Baltimore, similar to Sibley but better music choices. This is helped to dose the tumor. Another extended mediation for me.
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| Scan #7 - Trip to John's Hopkins Baltimore, or "Mothership" |
Sunday, February 28, 2021 -
Scan #9 - MRI of the bottom of the spine at Sibley. 1 hr, another extended mediation
Scan #10 - MRI of the top of the spine at Sibley. 1 hr, they did bolt my head down in another device so even less I could see, but another extended mediation session.
Monday, March 01, 2021 - Scan #11 - Bone Scan at Sibley. This was a first for me; they inject a radioactive isotope into your veins, and then ask you to drink as much water as possible and then come back in 3 hours. I got down 84 oz. in 3 hours, and I was certainly over-hydrated. The actual scan was quick (about 15 minutes), but the tech said I really don't see any disease in your body... I just started laughing and laughing for joy as that meant I had caught this thing early.
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| Scan #11 Bone Scan |
Tuesday, March 02, 2021 - Reconvene Meeting with Dr Smith. My wife attended with me and had to get on the visitor list due to COVID-19 protocols. We had a lot to discuss.
Scan #1 - two small likely cancerous nodes (5mm and 7mm), one on each side at base of lung... wait and monitor, plural effusion likely comes and goes.
Scan #4 - tumor not impacting spinal cord, no loss of walking or bodily movements, win!
Scan #5 - no trace of cancer growth below the diaphragm, win!
Scan #6 - bone biopsy confirmed ER+ / HER2 - breast cancer cells growing in the spine. This confirmed metastatic breast cancer or cancer that has spread to my body.
Scan #9 - no trace of cancer at bottom of spine, win!
Scan #10 - no trace of cancer at the top of spine, win!
Scan #11 - T5 confirmed spot and small areas of interest in right clavicle, right shoulder and left foot.
Diagnosis - Metastatic Breast Cancer, a chronic condition with no cure. Since cancer is hormone positive, the first wave of treatments will be to treat cancer with hormone blockers for as long as I can, hopefully for years and to follow closely with CT scans and bloodwork. Goal is to keep the disease at bay or stop its growth; if things continue to spread, then we will switch meds.
1. Xjeva Bone Injection will decrease bone resorption and increases bone mass and strengthen the bones.
2. Lupron injection will shut down my testosterone hormone production.
3. Letrozole is an aromatase inhibitor. This means it blocks the enzyme aromatase (found in the body's muscle, skin, breast and fat), which is used to convert androgens (hormones produced by the adrenal glands) into estrogen. In the absence of estrogen, tumors dependent on this hormone for growth will shrink.
4. Ibrance which is a cyclin-dependent kinase CDK4/6 inhibitor. A kinase is a type of protein in the body that helps control cell division. CDK4/6 inhibitors work by interfering with the kinase and stopping cancer cells from dividing and growing. This slows cancer growth.
Tuesday, March 04, 2021 - Dr. Larry Lo Neurosurgeon at JH Baltimore works in parallel with Dr. Redmond. We discussed my case and went over the dosing images and confirmed a go for Radiation!
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| CyberKnife Dosing Image - (Green) Radiation Field (Cyan) Spinal Cord |
In closing, this all came out of nowhere; it has been a tidal wave of emotions, but I am proud of how I responded and humbled that my cancer team rallied around me. While I have a difficult disease, I know I must HammerOn and find a way to sustain my condition for as long as I can. I am thankful to all the medical professionals I have met along my journey, especially my mediation class and instructor, and family and friends that will continue to support me. For my family that has been there with me every step of the way-- from coloring Fuck Cancer coloring books or just trying to keep things normal-- I will never give up, I'll stay focused in the moment and go 1-0 each day.
HammerOn
Cancer Survivor 2019 / Meta Thriver 2021
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| "Me and Me" a custom mold of me, used to bolt down to table for radiation |
Hammer on Matt, as long as I have known you I have always admired your perseverance in the face of adversity. I believe you can conquer this. -Ray
ReplyDeleteI'm pretty sure all your mentions of "mediation" were supposed to be "meditation" :-) That said, I'm so happy if any part I have played, along with the support of our Sibley meditation community, has given your the ability to navigate this experience with grace and calm. You are an inspiration to all of us, Matt. HammerON!
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