Late last year I found a lump in my neck.
This lump persisted through the next few months of which I finally told myself, “if it’s still there after Christmas I’ll make an appointment to get it checked out.” Fast forward to early-mid January and I lost my eye sight (in the eye the same side my lump was on). While worried at work, I made the call to my family doctor, explained my situation and was able to secure an appointment the following week. Thankfully the eye sight returned a few hours later, but still, that’s what kicked my ass into gear about getting in to see my doc.
Yes, I indeed had a large lump in my neck but I also had another slightly below it as well. Unsure of what they were I was sent for a routine CBC and an ultrasound. A few days later my blood work came back, noting that my white blood cells were quite low… so that was strange but I waited for the results of the ultrasound to come back and for my follow up appointment a few weeks later. Obviously googling the shit out of low white blood cells etc etc etc in the meantime.
The ultrasound indeed did show I had the couple lumps on the one side of my neck, but, it also showed more lumps on the other side of my neck. Of which the majority were determined to be my lymph nodes.
The next doc appointment, I was asked another series of questions… this time more specific than generalized. I spoke up about having incredibly painful bone pain in my shins and long arm bones all the time. Bone pain, not muscle pain. To losing weight and just generally being tired, but I was really focused on my arms and shin bones constantly hurting. I was told I needed to go for another ultrasound, more blood work, a urine test as well as an MRI this round.
Blood tests turned into weekly blood tests for the next 6 months.
The ultrasound showed no signs that my lymph nodes were improving or getting smaller- in fact they were becoming larger. To the point where you could see them protruding out of my neck if I didn’t keep my hair down. I stopped taking photos of myself, and I honestly would not leave my house if my hair was in a bun or tied back exposing my neck. If a photo was taken I was sure to brush my hair in front of my face, covering anything on my neck. I look back through social media, recognizing the exact thoughts in my head if there was a photo taken of myself- of which there really isn’t many stemming from October of 2016 to now.
The urine test had these “light chains”
The MRI showed yet another picture of these lumps. These stupid goddamn lymph nodes.
I was then told I needed a CAT scan followed by a biopsy of one of my lymph nodes.
After that, along with those weekly blood tests it was all confirmed.
February 2017 the words multiple myeloma were spewed from one of my doctors mouths as a “it sounds like this, but let’s run some tests and see.”
June 2017 all the tests were confirmed. I officially have an old persons disease and I haven’t even turned 30.
Multiple myeloma right now is a battle of not knowing what the future has in store for me. Maybe I’ll be “lucky” & it won’t progress much more for many, MANY more years. From my understanding thus far is that my body does not have what it needs to produce healthy bone marrow, which causes my bones to form lesions (where the extreme bone pain comes in), and that my body right now is producing too much of this antibody- M protein- that doesn’t allow me to fight infections.
It is me waking up every single morning stiff as a board, basically waddling my way around my house until the swelling/ bone pain kind of dissipates throughout the next few hours. I basically live on ibuprofen as well as two other pills that are meant to help my bones become strong.
It is me walking around with a broken foot because my bones will not heal themselves so a cast will do no help. It is hoping these new pills work so I don’t need surgery.
It is me sleeping at times I am not required to be working… which is me not responding to phone calls, text messages and even missing appointments because I just cannot be bothered to try and move.
I constantly rub my arms every day just hoping that I can maybe get them warm so they won’t hurt for a few minutes.
I honestly feel like an old person.
This is multiple myeloma & me.