My (step)dad who raised me died in January from multiple myeloma, a blood cancer. I wanted to put together a timeline for myself so I can have everything that happened from the time of his diagnosis to his death all in one place. This is the first post in the series.

Nov. 2023 – I visited my parents in Florida. My dad was working at Goodwill and tweaked his back, around the week before Thanksgiving.

Dec. 18, 2023 – He went to the hospital, finally, because his back still hurt. He wanted to wait until January when his insurance reset because there was some kind of lapse or something. However, he was actively lying on the floor because it hurt so bad, and my mom was like, “January is in two weeks. Do you want to feel this bad for TWO WEEKS? Or do you want to go do something about it?” So he was all, “Fine, I’ll go so you’ll feel better and won’t worry so much.”

Dec. 19, 2023 – He was admitted, and they found a lytic mass on his spine.

Dec. 20, 2023 – Lots of scans so they can see where the mass is coming from. A biopsy to be given once scans are complete. They keep saying the c word and then saying “well we won’t know for sure if that’s what it is until we finish the tests,” therefore stressing my mom out. He is in good spirits and good humor, mostly because he is on a lot of painkillers and steroids.

What we know so far:

• He is in ICU so they can continue to monitor his nerve and motor function.
• He will have to have surgery on his back because the bone around the mass has become brittle and needs to be reinforced so he does not lose mobility, motor, or nerve function.
• He will probably have to have radiation to shrink the mass before they operate.
• Neurologists and oncologists are in charge of all the scanning and such like.
• He is, so far, completely on board with getting the recommended treatments.

Dec. 21, 2023 – My dad had a bone marrow biopsy, which he absolutely hated. (When he talked about it, he went from them hitting the needle with a mallet to a hammer to a sledgehammer and then a drill. And he said they put a hole in his back. And he can’t believe they only put a band-aid over where they put the needle in. He also couldn’t believe it was only a needle even though me, my mom, and the doctor told him so. So, yeah, that sucked.)

Test results will be in at the end of next week (Thursday at the earliest), but the blood tests show plasma cell dyscrasia. The oncologist said that right now signs point to myeloma, but there is a wide spectrum starting with MGUS (Monoclonal gammopathy of underdetermined significance) all the way to multiple myeloma. So, basically, they won’t know for sure (a) if it’s myeloma, (b) what stage the myeloma is if he has it, or (c) what his treatment plan will be until they get the biopsy results back.

The good news is that all three of the doctors (oncologist, neurologist, and radiologist) so far agree that he should NOT need surgery because there doesn’t appear to be any damage to the bone and he doesn’t have any neurological issues (loss of motor function, etc.), so the mass can be shrunken with radiological treatment. However, the neurologist has the final say on that, and it wasn’t clear exactly when he’ll know–probably when he gets his biopsy results back and they talk about the treatment plan.

The other good news is that he only has two lesions, the one on his back and a very small one in his skull. The oncologist said that the skull lesion is negligible because the big concern would be lesions in the thigh, arm, or back because those are the ones that carry weight and can be broken/cause damage. So as long as no one cracks him in the head or he doesn’t do a headstand, the skull lesion isn’t a problem.

The doctor also said to think of myeloma like diabetes. It can be managed and controlled, and she has several patients that have lived 10, 15, or more years with the condition. Again, he won’t have a treatment plan until after the biopsy results get in, but that is v good news.

He wants to go home, obviously, but he has to be able to manage the pain at home (that means meds only, no IV), and his blood pressure needs to come WAY down. They’ve been monitoring it all day, and it’s still high, so he has to stay until tomorrow at least. His pain is at a 7.5-8 (I shared the Hyperbole and a Half pain scale with him, and he agreed it was much more accurate than the one the hospital uses), but he hasn’t needed the IV all day. So if all goes well tomorrow, he should be home before Christmas.

Dec. 23, 2023 – Released from the hospital!

Jan. 3, 2024 – My dad was diagnosed with multiple myeloma, which is a form of blood cancer but that is–as the oncologist keeps assuring my parents–highly treatable. So what that means is that he’s going to start treatment right away which is outpatient and will consist of a daily pill and two weekly injections. He is getting induction therapy. The treatment is three weeks on and one week off, so that they can do blood tests during the off week and see where his counts are. At the time of the diagnosis, they didn’t have the stage but the doctors said it doesn’t matter because the treatment plan is the same regardless: aggressive treatment to get him into remission and then a daily pill for the rest of his life to maintain remission. He is also eligible for a bone marrow treatment, so they’ll harvest his bone marrow and then do some science-y stuff to it so it treats the cancer. (The whole family on the call: “How are they going to use your bone marrow when it’s full of cancer? [laughter]” My mom: “What did you say? How are they going to use his marrow when it’s contaminated? I don’t know! Science!”) (This is explained in the link.) Also, the self-transplant can help speed along treatment or make it more effective or both.

As for the mass, they are going to do 10 targeted radiation treatments to shrink it, which will relieve the pressure on his back and get his spine back to where it should be. They want to do a PET scan (whole body) to see if there are any other masses that need the treatment, but they will start on the spine mass right away. which means they don’t need the PET scan results for that. His treatments should all start next week, once the insurance stuff gets sorted.

So, this is the best case of a worst case scenario. He and my mom are doing fine, just exhausted and ready for the treatments to start.

Jan. 25, 2024 – Started full chemotherapy.

Jan. 30, 2024 – My dad has finished radiological treatment of the mass and feels so much better because the pressure on his back is gone. So now it’s just a matter of getting the myeloma into remission so he can move to maintenance phase.

Nov. 18, 2024 – The mass in his back shrunk to half its size and they took him off of one of his meds and instead of going in every week for treatment, he will go every two weeks, so things are looking up.