I awoke to intense pain in all of the joints in my legs. Terrible pain like they were broken. But they weren’t; they all moved fine. And thank goodness this was pain that could be pierced by Percocet!

After the second high-dose methotrexate, Saturday morning arrived and the exact same pain returned. The night before saw a walk through the grocery store, but not much more. This time we visited Urgent Care to make sure that nothing was actually going terribly wrong.

X-rays and blood tests looked good. It sounds like arthralgia (like arthritis without the inflammation) can be an occassional side effect of the treatment.

Next time I’ll take Friday night off entirely and see if that changes things.

Getting out of the hospital after that second treatment was a bit stressful. They prescribed that I was to take 25mg of Leucovorin (the Methotrexate antidote) every 6 hours, for nine doses. We checked at the hospital’s pharmacy: out of stock. Group Health? Out of stock, unless we wanted to drive to Tacoma! My dad got on the phone and started calling pharmacies; he found one near our house that had it. The only problem was that they only had it in 5mg tablets! So I got to take 5 pills every 6 hours. It was just a shock that they were discharging my from the hospital without first knowing that I would actually be able to buy my rescue dose.

Also! I had an MRI of my head performed on Wednesday, and Dr Norman has communicated that it looms great. The lymphoma appears to be responding well to the treatment.

In a few weeks we’ll be meeting with a doctor at the SCCA that specializes in transplants to gather a recommendation on next steps after treatment. These lymphomas have shown themselves to be tricky, and it might take a stem-cell transplant to get me a chance of a long-term remission (or even cure).

I was to get my next dose of DepoCyt delivered intrathecally on Friday, but we had to postpone it as I forgot to start the pre-medication (Dexamethasone) on Thursday. For some reason I had started thinking that the Dex was pre-medication for the methotrexate. It turns out that administering DepoCyt without the pre-medication can cause seizures (among other unpleasant side-effects). I’ve started the Dex now and we’ll roll the treatment into the rest of the party on Monday.

Tomorrow we start round three.

I tried taking Percocet to soothe the pain, but that upset my stomach so much that I couldn’t keep it down! When we went to the Oncology Infusion Center on the Thursday prior to collection, they let me stick around after the blood tests so we could try and manage the pain. Dilaudid and laying in a bed seemed to help a little bit, and eventually it seemed like I might be ready to head home. Just before the elevator doors closed, Dr Norman’s RN called my name and wanted to chat. After talking to her for a minute or two the pain started up again, and with it came some serious nausea. And then I tasted my lunch again.

Back to bed! This time we started a glucosteroid (Dexamethasone) for possible head inflammation. That seemed to help in a big way. And so the next morning before heading to the apheresis I actually stopped by Group Health for blood tests and another dose of Dexamethasone. That calmed the pain again.

My hope was that stopping the Neupogen would make the headaches go away, but they’ve stuck around. All this week I’ve had a few different kinds of aches:

• top of my head, continuous pain like I bumped it on something
• front of my head between and above my eyes, seemingly sinus-related
• throbbing back of the head pain when I flex my abs or stand up quickly

It’s really not fun. It’s making me less inclined to be creative or concentrate on things. I weaned myself off of the Dexamethasone on Tuesday, but I’m considering giving it another try!

Oh, and I have hearing loss and a constant ringing sound on the right side of my head. I’m really hoping this is something that will heal! I remember having it start just before one of the intrathecal chemotherapy rounds, and Dr Norman noting that if it goes away because of the methotrexate we’ll know it’s lymphoma-related. It hasn’t gone away yet, which means it isn’t due to nervous system infiltration of the lymphoma. Good to know! Now that we’ve got that figured out, it’s safe for it to go ahead and get better. Right?