The crazy train never stops

I woke up feeling fine yesterday moring. But a few hours later I started to fell very uncomfortable - mostly in my lower right back. I'd been a bit gassy lately, so I took a coupld gasX hoping that might help. But within minutes I was in severe pain. Pain so strong that I was sweating and felt like vomiting. No matter what I tried it wouldn't let up. I walked, I sat, I laid down. I tried my right side, left side, back, and the fetal position on my side and on my tummy. I got to the point I thought I was going to throw up.

I decided I had better call my husband. I told him to call me back in 1/2 hour, just in case this didn't resolve. After that I decided I had better call the oncologist. I don't remember reading about any side effect like this, but better safe than sorry. By the time they returned my call, my pain had dropped a lot, from a 10+ to a 4. And by a little later to a 2. The onc still wanted me to come in so they could check my urine and check me over since chemo was scheduled for today. I had blood in my urine, but no signs of infection at first glance. So they are pretty certain I passed kidney stones. The only way to know for sure is to do a CT scan, but I've had too many. We agreed on that. But if the pains come back very severe again, I had to get one. Last night around bedtime I had a lot more pain, but I'd say it was more in the 5-8 range. i can handle that. And this morning it was better.

I went in for chemo today, thinking that the only thing that could stop me from getting it was the culture they started from my urine showed anything strange. But they didn't have results yet. I had my labs (we've learned the trick on how to get a return with my newest port, so it went much faster than the last two times). I should have had chemo again last week, so I was certain my labs would be fine three weeks out. But not. My WBC is way too low. Neutrafils .7. First time around with FOLFOX at the 2 week point my neutrafils were 1. That is to low also, but he let me go ahead with chemo and follow it with Neupogen shots. And he removed the bolus. I was able to get through the rest of my chemo without the bolus, and with Neupogen shots.

Now it will be FOUR weeks before my next chemo. I'm thinking at this point that if it was going to be this long, I would have been better off trying for surgery to remove those nodes first, and follow it with chemo. This is ridiculous. And I mentioned removing the bolus for the next cycle since it worked so well first time. But he says no - he wants to try one more time, and have me get Neulasta and see if that will do it. They tried to schedule me for chemo Tuesday, disconnect Thursday, Neulasta on Friday. I told them they are fricken' nuts! I'm trying to regain my life this time around and get away from all these ridiculous appointments. I'll feel like total crap Thursday and Friday, and if I have to make it to medical appointments both days, there goes my chance at being productive for anything else. I like my Thursdays, with Saturday disconnect at home. I can work Thursday and Friday. Saturday, Sunday, and Monday aren't great for me - but it is MUCH easier for me to be out of the office on the weekend.

So I will have chemo next Thursdsay, putting me on the bad schedule I don't want. This means I'll be having one of my worst days for my son's choir concert day #5 of my schedule. It means chemo will be scheduled for Thanksgiving (not doable), and over Christmas, and that my bad weeks are the week I have my son, and the good weeks are the week I don't have him. I HATE getting stuck with these schedules that just don't work and add heavily to my stress load.

I tried hard to talk my onoclogist into letting me get chemo today and following up with Neupogen or Neulesta. He refused. He is always the most aggressive oncologist around. But he told me if he let me have chemo today, I would end up in the hospital. Just like the first time around fighting this beast, nothing is going right second time around. I shouldn't have even had a second time around. 3 months of being tricked into thinking I was NED - that is the only break. Then right back to the problems - puncture my lung putting in the port, no leucovorin for treatment, a break so I could go on an already sceduled trip, which I then couldn't go on, and now a delay which pushes me out 4 weeks between treatments. And on top of it all my thyroid is a mess and they haven't figured all that out yet. Add in some kidney stones for fun. I'm ok with the handfulls of hair falling out, plugging my shower, covering my clothes and furniture. I'm ok with the fatigue. I'm ok with the constipation and diarrhea I had to fight. Just don't mess with my schedule!

We've known my cancer was growing since before the middle of August - that is when my CEA showed it was at 8. But we had to wait and re-test it in case it was a fluke. Then we had to get a PET scheduled. And then core needle biopsy. Then I needed another port put in, and had the fun of the collapsed lung added in. CEA up to 12 three weeks ago when we finally got started. I pushed as hard as I could to get going on chemo quickly. But now I wish I hadn't. I had so many things I wanted to get done and in order before going through all of this again. Everything is a scattered mess. Nothing is running smoothly. I would have been better off waiting until after my trip to start. Then I could have actually GONE on my trip. And then I could be on the schedule I need for my family and work. And I would have had a few weeks to take care of the things I wanted done first. Sure, I have some time now - but now I'm already struggling to catch up on getting behind from all those medical appointments and a hospital stay, and chemo fatigue. I am beyond frustrated with always making the wrong decision and always having everything messed up. I am beyond jinxed. Most of the time we laugh about it, but I'm beyond laughing now. It just isn't funny to me anymore.

I had a meeting with my therapist just for me. Then I had one to discuss a meeting including my husband, which we already attended together. Then one to discuss meeting with the entire family. That was supposed to happen Saturday after this one. I couldn't schedule it for this Saturday, as that is my disconnect day - timing won't work for a Saturday AM appt. So now I had to call and cancel that one, because that will be my disconnect day. I tried to see if we could get in this Saturday instead. Nothing open. My son has to march for the Gopher games the last two Saturdays - then we are into November. I've already been NEEDING to have this meeting with my family since the beginning of September. I am not waiting till November. Heck - who knows what will happen to mess the schedule up by then anyway. I did NOT want to be in charge of our family meeting. I want that stress taken off of me. That is why I've been going to a professional. Now it will all be on me again. This won't come off the way I want it. I will be the **** - rather than having someone else explain whey many of these issues are so important right now.

I know, better than most people, that you really can't plan anything when dealing with cancer. But I still keep hoping that sooner or later things will be more predictable for me. I try to live like I can plan and schedule things. I NEED things planned or scheduled to look forward to, and I need some things scheduled just to make life with a large family work right.

I am so tired of being frustrated or angry or just sad because nothing ever goes right. It is getting me down.

I hate doing NOTHING to fight the cancer right now. No chemo, no surgery. Just sitting around with no energy, a bad attitude, and too much stress. Not killing any cancer this way...