Methotrexate, Fail

Today was my big, post-chemo MRI. The lesion hasn’t changed. How unexpected!

[A little background since I haven’t posted in awhile: I completed two doses of 5 gram-methotrexate IV treatments, one in March and the other in April. My system metabolized the drug so quickly that I got out of the hospital in record time, first after three days and then two. I didn’t feel any side effects other than increased fatigue and dry skin, and my blood levels didn’t drop below normal levels. I waited four weeks after round 2 and six weeks after round 3–today–to see if the treatments made any real difference.]

Don’t know what’s going to happen next. My treating doctor outsourced me to his PA for the first time, so I’ll be meeting her tomorrow, i.e. I probably won’t know anything until his majesty deigns to see me next.

Now trying to decide which scenario is the lesser evil: getting another biopsy that yields nothing or going for the worst form of chemo, HiCY (high-dose cytoxan), that changes nothing. Pretty sure I’d rather have my head cracked open again, but I don’t think that’s the popular answer among the docs.

Random funny part: my internist told me that my last two treatments were 100x stronger than your average oral methotrexate dosing for whatever auto-immune disease. One of the main diseases it treats (orally) is RA (rheumatoid arthritis). And guess what? My joints still hurt the whole time! ha ha haaa

Emotional state update: result strongly suspected, no surprises, no tears and/or cursing. My body just loved getting that chemo. Seems to me my immune system is darn healthy!

Annoyance/anger/frustration update: being holed up in my room for a month after all 3 hospital stays–exhausted, with sun & fresh foods forbidden, having to stay home or wear a mask to go out–not ideal. Spending 6 months in treatment before getting no answer as to whether chemo works or not? Particularly unideal.

Positive-thinking update: as of about two days ago, I decided to force myself to be more positive and think healing thoughts while engaging in productive visualization exercises that will cure me. Since I’m not quite sure what’s lurking inside the Chairman, I will imagine many worms shriveling to their deaths. Or maybe ticks. Worrmticula returns (to die)!

Radiology versus Neurology

As I suspected, the radiology report confirms that there are “no significant changes” in my MRI. After messaging my neuro’s staff about this update, I was told that the doctor still disagrees–apparently he’s communicated as much to the radiology department.

Of course, now there’s the issue of trust. If the report changes will it be real (i.e. the radiologist didn’t spend enough time reviewing it the first time) or stretched, fabricated, sorta-kinda-false (to appease the neurologist)? In truth it doesn’t matter because at this point I won’t believe it regardless.

I’m supposed to start with new treatments in the coming weeks, so hopefully I’ll get better results out of round two: 5 grams of IV methotrexate, wait 4 weeks, 5 more grams, wait 6 weeks, new scan. I don’t know whether doubling the medicine will give me typical chemo side effects since 2.5 grams, which is still considered high-dose, did not. Too many variables involved to start predicting again. “I don’t know” is my new mantra.

I meant to write directly after my last post, but once again I’m in limbo. I had my MRI and consultation, but I haven’t received the radiology report yet. The doctor told me there was “good news and bad news.” The good news was that he interpreted a [very] small part of the lesion to be slightly improved, the bad was that the whole area was a lot less improved than he had hoped. Despite his being very familiar with brain scans as a neurologist, I want to verify the former statement with the official radiology report; it’s extremely difficult (especially with my obstinate brain it seems) to match up the different layers of scans since there are so many variables to contend with, such as machine,  operator, head position, and cut. For example, comparing picture A to picture B might be perfect for the top part of the brain but totally wrong for the bottom, which is better compared to picture C or D. It certainly takes a highly-trained, fastidious person to read the results correctly. I know this neurologist is brilliant in his field, but I prefer to react only after reading radiology’s input–even then there can be discrepancies and differences of opinion.

Last Day in Purgatory?

It’s 11 PM, and I just took an ambien to try to help myself sleep. Grabbing this computer was clearly not the most logical step toward that goal, but I wanted to quickly jot down some thoughts before tomorrow’s MRI and appointment–possibly the most important ones of the last 3+ years.

Tomorrow I find out if my first bout of chemo–2.5 grams of methotrexate administered during a 3-day hospital stay via central picc–was at all effective. I’ve been doubtful since the beginning, so I hope and hope and hope that I am totally wrong. After so many years of waiting, any change would be “comforting.” The lesion got worse, chemo’s not the solution; better, HURRAY, time to zap it some more. Just please no more waiting for an answer, no more questions, no more unknown.

Coping with my circumstances would be so much easier with a definitive diagnosis. As it stands, it’s very hard not to live each day a little more depressed than the last.