Some of you may have guessed that no news isn't always good news, especially in my world. It's been a rough couple of days - I'm not going to lie.
My lab work wasn't good. My CEA is up to 25.something. I can't even remember anymore. And, the more acute issue that I wasn't even aware of? My platelets are dangerously low.
When I went in to meet with Dr. K. on Friday, it was pretty obvious we had issues. When they all walk in with "that look", you know it's not to share good news. While we are concerned that my CEA has spiked (which I hate hate hate hate), the platelets is a bigger issue. Typically, your platelet count should be at 150k. On Friday, mine were at 13k. They were pretty surprised that I was still standing, wasn't bruised or bleeding. After some discussion, it was decided that I would have a transfusion of platelets, with the hopes that it would boost my numbers and jump-start my production.
As luck would have it, that didn't happen. The platelet transfusion was simple, about a 90 minute process from start to finish, once they had the blood type-and-screen done. (In case you''re wondering, I'm blood type B Positive....donations welcome.)
Decision was made to wait until Tuesday (yesterday) to take blood again, to make sure my numbers bounced back to normal. I was scheduled to see just the PA, Kia, which was fine. I think we all assumed that my numbers would rebound, and I would be allowed to travel to Miami this week for the CCA conference I've been looking forward to for 4 months.
When Kia walked in yesterday and said Dr. K. would be in momentarily, I knew things weren't good. She let me down easily. My platelets were at 3k. 147k below where they should be. I didn't even know what to say. I was shocked. I had hoped that the numbers would rebound a little, not drop by 10k in 4 days.
To say I was upset would be an understatement.
Let me back up. I know I wasn't sure what platelets do. Here's some information about why low platelets (thrombocytopenia) is dangerous.
Thrombocytopenia is the medical term for a low blood platelet count. Platelets (thrombocytes) are colorless blood cells that play an important role in blood clotting. Platelets stop blood loss by clumping and forming plugs in blood vessel holes.
So, you can understand why my numbers being so low is so dangerous, right? *sigh*
During my meeting with my docs yesterday, it became pretty apparent that this is a huge issue. And, it's not just the fact that the numbers are low - the big concern is WHY the numbers are low. There appear to be a variety of reasons, which they are investigating.
In a very small population of patients on Temodar, dangerously low platelets count have been recorded. My numbers could also be low due to a couple of auto-immune disorders, which are uncommon but not unheard of in colon cancer patients. They are also looking to see if there is a basic, fundamental issue with how the platelets are being formed in my body.
They took 10 vials of blood from me yesterday (for a variety of tests, including 6 for a single send-out test to another lab). 10. I jokingly said that, if they stopped taking blood, maybe my numbers wouldn't drop so much. I don't think they found that funny, but sometimes humor is the only thing getting me through these obstacles.
I got a call last night that, after my transfusion yesterday, my numbers rebounded....a little. As of last night, they were up to 11k. It's better, but no where near where they need to be. And, apparently, my now my hemoglobin has dropped. I'm not even sure what that means, or what the next step for that will be.
Here's what I know. I've stumped my docs, and that's not a place I like to be in. They are confused, but I know they are doing absolutely everything they can do to help figure out what's going on. We won't start chemo back up until my numbers stabilize, so there's no timeframe on that. We did talk yesterday about whether continuing the Temodar is a good idea, and both Dr. K and I agree that this it didn't seem like a ood idea. Based on what he and I talked about, I'm likely to go back on the Erbitux (the one that made me break out in a horrific rash) and Xeloda (the oral form of 5-FU). The hope is that I don't have a reaction to those drugs. *sigh*
Because of my issues, I had to cancel my trip to Miami for the Colon Cancer Alliance National Conference. I can't even tell you how much this breaks my heart. I'm just aching from this. I wanted so badly to go to on this trip. But, my doctors are concerned about me being so far away from home with numbers so dangerously low. I wasn't going to cancel, but my heart and my head had a tough-love kind of conversation, and I need to be thinking with my head right now. It wouldn't be smart to travel so far from home, especially when I'm trying to make sure I'm healthy enough to take the family to California next week.
We are supposed to go on a family vacation, care of an amazing organization called 3 Little Birds 4 Life, which grants wishes to patients battling cancer. During my conversation with myself, and with my docs, I made the decision that the family vacation is the one I *really* want to go on, and I need to rest up this weekend and hopefully give my body time to heal so we can surprise the kids on Wednesday of next week with this amazing adventure.
This whole thing just sucks. I want to be mad, but there's nothing or no one to be mad at. That's very frustrating. I want to have some control over what's happening, even if it just means that eating something or taking something or doing something could help boost the numbers. Unfortunately, there doesn't seem to be anything I can do to help my body do what it's supposed to do. That's infuriating.
So, I sit here, and wait. I'm waiting to see if the lab work tomorrow will give us any indication as to what's causing this. We wait, because it's mainly a process of elimination to figure out what the hell is going on inside my body.
I'm waiting to see if my back pain, which has kicked up (as well as the pain in my lower abdomen) is muscle related, or cancer related. (Dr. K. dropped that on me last week, and I haven't even had a chance to process that part yet.)
I'm waiting to see if my body is producing good platelets, or if there's been some permanent damage done that will cause me life-long issues with this type of thing.
I'm waiting to see if I'll ever be able to go back on chemo. I asked Dr. K. yesterday....what happens next. He doesn't know. We had a brief talk about whether we continue with chemo, which seems to be doing more harm than good. That was a hard conversation for both of us to have. Don't get me wrong - I'm not giving up. I'm just voicing what goes through my head, and wondering where we go from here.
This just sucks. My platelets are being douchebags, and I can't do anything about it. I hate that.
But, I'll live with it. The ironic part is that, for the most part, I feel good. If I could get my lower back/abdomen pain in check, I'd feel great. With the exception of one small thing (small pinprick marks on my legs, which are nothing more than an outward sign of low platelet counts), I don't show any signs of low platelets. I'm not bruising easily. I'm not light-headed. I'm not dizzy or shaky. I'm not bleeding. I feel pretty good! The docs seem to feel that's in my favor. I guess I'll take that as a good sign.
I'm learning to come to grips with the fact that I can't go to Miami. Cancelling the trip sucked. It's just another reminder of how awful this is, and how little control I have over what's going on inside my body. I just hope that I don't have to cancel my trip next week. That will break my heart.
So, please keep me in your thoughts and prayers. It's going to be a long week. :)