“I loved serving my country, I loved my soldiers, we had an unspoken understanding of selfless service and commitment to each other, fighting the war in Iraq was easy, but now… battling this war on ‘cancer,’ alone, and forgotten, really, is what is hard.”
Robert Johnstone never expected this to be where he would spend his 41st birthday. He is currently laid up at Johns Hopkins pending a bone marrow biopsy for his untimely diagnosis of multiple myeloma. This plasma cell cancer crowds the bone marrow, leading to painful bone fractures and a severely immunocompromised system.
Rob enlisted in the United States Army in 2005 as a human intelligence collector and interrogator assigned to the 201st MIB. He was immediately deployed and sent out to Camp Cropper, Iraq – a smaller compound on Victory Base Complex at BIAP. His HUMINT background and training made it so he was constantly on the go, going from Cropper to FOB Hammer, Camp Taji, and everywhere in between. He was deployed during the height of the war over 15 months, and there was no shortage of detainees, leaving Rob running on minimal sleep and maximum stress. But, he knew his work would effectively keep his teammates alive, so it was a no-brainer for him.
“Upon arriving at Camp Cropper, I first noticed the smell. The large burn pits were going 24/7 throughout VBC and BIAP. At Camp Cropper, every night, we were burning sensitive materials from the day’s work (paperwork, computer parts, trash,) in empty oil drums, while others would throw leaky, spent munitions and whatever else needed to be disposed of… I would cough up phlegm that was brown from dried blood every morning and have a heavy pressure in my chest each night, I thought everyone had experienced that though, and didn’t think much about it...”
Rob left service in 2010 and settled in Northern Virginia. He felt good, the phlegm and chest tightness seemed to have disappeared and he was living his best life – until 2020.
Rob began experiencing back pain which isn’t abnormal or necessarily concerning for a post-9/11 military veteran, given the taxing force we push our bodies through. But as the year went on, Robs’ back pain worsened to the point he would have excruciating pain getting out of bed in the morning. His care team put him into physical therapy as they determined it was musculoskeletal.
During routine bloodwork, some mild abnormalities were found and Rob was sent to the hematologist (which took months due to the pandemic). During the time in between “… I continued PT and at my final physical therapy session, I had to stop it because of the pain I experienced in my chest. I found out later that I literally broke numerous ribs during that session, my body was breaking down…”.
By September 2020, at 38 years old, he was told he had #MultipleMyeloma and was referred immediately to a hematology oncologist and began radiation treatment to treat a large, lytic lesion in his spine. “After radiation treatment, I started an intense regimen of chemotherapy/immunotherapy. After months of chemotherapy, I qualified and was admitted to the University of Virginia (UVA) for an autologous stem cell transplant (SCT) in April 2021. Prior to the SCT, my myeloma specialist, who was also my transplant doctor, submitted my case for review in front of a medical board at UVA and they determined that because of my age, demographic, and no family history, that my multiple myeloma was absolutely a result of my time in the Army and my exposures to carcinogens and airborne toxins while deployed to Iraq….”
Robs’ multiple myeloma specialist also stated that in her 20 years of dealing with this disease, that Rob was her youngest patient.
After completing my SCT and staying in the hospital for almost a month, I was released and began my maintenance chemotherapy regimen. Because multiple myeloma is incurable, most patients have some sort of maintenance chemotherapy to keep it at bay and this varies per individual. My maintenance chemotherapy has been monthly up until July of this year. For the last few months, my multiple myeloma bloodwork numbers have been trending in the wrong direction and it has been determined that I’m having my first relapse. Because of that, my doctors will need to change up my current chemotherapy regimen, which will include increased dosage and frequency, to more than likely a weekly schedule.
“… Multiple myeloma has destroyed my body. I have had substantial bone damage because of this, to include: numerous compression fractures throughout my vertebrae, broken ribs, and a lytic lesion in my spine. Because of the compression fractures I suffered, I lost three inches in height. Multiple myeloma also
has caused me to become extremely immunocompromised and because of the onset of COVID at the time, it has limited me and my family on what we can do (to this day). Another biproduct of having multiple myeloma is that I also have anemia. It will come on heavily and cause extreme lethargy, my body becomes very cold, and I have no energy. One of the most difficult parts of all of this has been my inability to do certain things with my young son. At the time of my diagnosis, he was only a year old. I
couldn’t hold and play with him because of the damage done to my body. We had to pull him from daycare because of how weak my immune system and all of the sickness he would/could bring back from there. This has put an incredible burden on my wife to not only be my caretaker, but also take care of our young son and manage traveling between Northern Virginia, Charlottesville, Cleveland and Baltimore for my medical appointments…“
Rob is one of the many warfighters left behind by the Department of Veterans Affairs and the #PACTAct – after submitting an initial claim in July 2021 for multiple myeloma due to known exposures in Iraq, along with a medical nexus letter from his care provider and myeloma care team relating his service and exposures to his cancer, his VA Service Connection was DENIED (January 2022).
When the PACT Act passed into law on August 10, 2022, Rob approached his local VSO again and resubmitted a supplemental claim the following month. Despite being in active treatment for cancer, immunocompromised, in pain, and facing a terminal illness, Rob was again, DENIED by VA (February 2023). He isn’t sure what to do next, is health is slowly worsening, his myeloma has relapsed into an active state, his spine is collapsing on itself and he cannot take care of his family.
Multiple Myeloma is rarely diagnosed, and accounts for less than 35,000 cases annually. As a relatively uncommon cancer, the chances and lifetime risk of being diagnosed with multiple myeloma is 1 in 132 (0.76%) for the average civilian and 99% of those diagnosed are over the age of 65 years. Chances of five-year survival in late stage multiple myeloma are around 50% – unfortunately many of these veteran cases are diagnosed in later stages due to the rarity and age gaps in post-9/11 veterans when compared to the average cohort of patients.
Here is a partial list of known exposures that can damage and alter plasma cells (white blood cells) and can increase ones risk of developing multiple myeloma:
- Benzene: A known carcinogen, exposure to benzene has been associated with various blood cancers, including multiple myeloma. Benzene exposures can occur through burn pits, fuel exhaust exposures, air pollution, etc.
- Radiation: Exposure to ionizing radiation may increase the risk of various cancers, including multiple myeloma. Sources of exposure can include nuclear propulsion, depleted uranium in munitions, tanks, etc., and some reconnaissance and surveillance equipment.
- Agricultural chemicals: Some chemicals associated with white blood cell damage include organophosphates, atrazine, glyphosate (Round-up), and organochlorines like DDT.
- Organic solvents: Some reports suggest a possible link between exposure to certain organic solvents and multiple myeloma, but more research is needed.
- Heavy metals: There is some evidence suggesting a potential link between exposure to certain heavy metals (like cadmium) and multiple myeloma.