I hate being right

I really need to quit being right about everything.  Well, I’m not right about all the things, but I do tend to be right about cancer things.  Way back when this all started,  I knew that the little pain was cancer.  When the doctor wanted me to come in to talk about results in April, I knew the cancer had spread.  More recently, I knew these little aches and pains were off.  And once again, I was right, things are not going well.  So you see, I really need to quit being right about everything.

But I need to back up and catch you up on the past 3 months, because so many things have happened.  Last we chatted, things were stable and I’d just had a really good PET scan.  (This was at the end of November.)  As a matter of fact, the scan was so good, that the doctor had to double check and make sure he was actually looking at my scans and not someone else.  We all rejoiced!

Two weeks later, I was standing in the kitchen and I got a stabbing pain in my right side, near the bottom of my ribs.  The pain morphed to more of what a really giant bruise would feel like, but it didn’t go away.  The onc and I spent the next two months chasing down the pain.

First, I saw the NP, who thought it could be an internal bruise, as I had no other symptoms.  I knew she was wrong, so I kept pressing for an answer.

Then I had a bone scan, which showed nothing new in my bones.  And yet the pain persisted.

Finally, I had a CT scan.  (At this point, it had been about 5-6 weeks since the pain first started.) The scan showed a small collection of fluid in the pleural lining of my right lung, and some other thing in my thoracic spine (which is where some of the bone mets were) that was possibly encroaching on the spinal nerves.  At last, we had something that resembled a cause for the pain.

While all of this was happening, I developed pain in my whole body.  It was a diffuse and dull aching, and it was miserable.  I just wanted to curl up into a ball, but even that didn’t help.  My onc prescribed me a really strong pain med, which I have been taking with success as needed for about 3 weeks now.  During this time, I’d had blood work done several times and my tumor markers were spiking from 330 up to almost 500 in about 3 weeks.  I also had this feeling that things just weren’t right in my body.  In addition to the pain in my right side and the all over diffuse pain, I also had some strangely persistent abdominal pain.  Those close to me tried to tell me I was doing too much, or that I wasn’t sleeping or eating enough.  But I knew better than that.  I knew something was wrong.

After meeting with the oncologist, we decided to have an MRI in order to see more clearly what was happening in the thoracic area, and a PET scan to get a complete picture.  Shockingly, the insurance company approved the PET in less than an hour!  This is shocking, because I’d had to wait at least 2 weeks for each of the other tests (bone scan, CT scan, MRI) to be approved.

So you are now brought up to speed.  I had a PET scan yesterday and got the results today.  It’s not good, and I’m not surprised.  (Here I go again, being right.)

1. The bony mets have progressed.  I’m not sure to which bones, and I don’t know why the progression wasn’t picked up by the bone scan.  My best guess is that things are moving quickly, and in the month between the bone and PET scan the bony mets were on the move.
2. The fluid around the R lung is metastatic, and there is now a medium to large pleural effusion.  I’m having it drained tomorrow, so we’ll see how much fluid is there.  Draining it is just a stop gap measure, though, it’s just to make me comfortable.   The fluid will continue to come back until we land on a med combo that works to keep the cancer at bay.  (As an aside, I have zero understanding of how the fluid accumulates, what cancer has to do with it, and how the fluid gets cancerous.  These are all question for the onc on Monday.)
3. I have wide spread new mets my lypmh nodes:  upper abdominal (which explains the abdominal pain), retroperitonium, mediastinal, and mammary nodes (which explains the pains I’ve been having in my chest).

None of this is good.  Not one bit.

At this point, I’m a bit frantic because I haven’t been taking any meds for 2 weeks.  (Once the CT scan results came in, the onc took me off the meds because a) they weren’t working and b) my system needs to be clear of the meds in order to be eligible for some trials.)  All I can think is “Crap!  This cancer is going bonkers!”  But I also know that the onc will come up with a plan.  I know there are still lots of medication options before I reach the end of the medication road.  Just a few are oral meds and the rest are IV chemo.  While I’m not thrilled about IV chemo, I’m really not thrilled about dying, so I’ll do what I need to do.

I have the MRI tomorrow and onc appt on Monday.  By then I’ll have a plan and I’ll have had a nice, long pity party, and then I’ll be ready to be back at living my best life.  In the meantime, I’ve really GOT to figure out a way to quit being right!!