Discouraging News

My CEA level (tumor marker) went up from 20 to 26.1 after a drop last time from 25 to 20. I’m trying very hard not to get really down about this, but I am discouraged. I thought things were going so well, and it’s easy to berate myself for being so optimistic and getting kicked in the butt for it. I know things haven’t gotten worse because of my optimism, but that’s in my head. In my heart, I’m sure I got too cocky and now am getting my just desserts. This head-heart war is tiring.

I know this increase could just be a blip or something, and I’m trying to stay positive, and optimistic, and not worry. But it’s hard not to worry. I won’t have another appointment for a little over 2 weeks, and I know I’m going to fret and worry that whole time. So I have a call in for my PA, who won’t be in until Monday, to see if we can have a discussion about what this may or may not mean. I know my partner and I will worry ourselves silly over this until the next blood test. I have to keep in perspective that my initial CEA was over 70 when I began treatment. I will not panic about this. I will not panic; I will not panic. Okay, maybe for a minute or two.

In the meantime, I intend to eat some chocolate; chocolate is medicine and will make me feel better. 🙂

Sleep

I am feeling somewhat ‘hungover’ this morning. I slept well for two nights in a row, and took a long afternoon nap yesterday. And I think that’s why I’m feeling this way this morning. I think perhaps I hadn’t realized how much stress and tension I have been feeling since the Feb CEA blood test that showed a slight increase in levels. No matter how I tried to put it out of my mind, it had been wearing on me. It went up less than a whole point, but hadn’t been going down much in the 3 cycles of treatment before that. And yes, that worried me. Even though my treatment team was encouraging and said if it was going down, even a little bit, that was a good sign, my train of thought was yes, but it’s not going down fast enough.

The first round of treatment sent the CEA spiraling down from in the 70s to in the 30s, so I was hoping it would continue down like that. But that wasn’t to be. It went down by 5, or 3, or 2, then went up. The new combination of chemo didn’t seem to be working as well, and I let myself get discouraged. I was happy to be on maintenance, but still concerned about whether it would do anything. So when my PA called with the good news that the CEA came down almost 5 points, I was so relieved! And I think the loss of the tension and stress is what caused the excessive sleep. I’m not complaining; far from it. I just need to get my body and brain in gear and shake off this dragginess from too much sleep. It doesn’t help that the winds have been blowing all week or that the pollen count is in the extreme range. But I will get through this episode, too. And I will get moving. As soon as I eat breakfast.

Relief

Yesterday was blood work and treatment day. My white and red cell counts are good and holding steady, and blood chemistries, platelets, and everything else is good, too. So I had my 2nd dose of maintenance Pemetrexed. One thing that the nurses pointed out was my red cheeks and neck, which evidently is a side effect from the steroids I’m having to take the day before, day of, and day after my treatment. I was anxious about the CEA level as it was starting to inch up a bit the last time we checked it. But the result wasn’t available until this morning. My PA called to let me know it had gone from 25.1 to 20 – I could have hugged her over the phone!

I can’t begin to tell you how relieved my partner and I are about this reduction. I was really nervous about it, especially since I’ve developed a dry cough and am having to use the Ventolin again. I’m thinking, and my PA concurred, that it’s probably allergies. March here in the desert is usually windy, and this March is no different. We had sustained 15-20 mph winds on Sunday with heavier gusts, and it’s been breezy ever since. The pollen count is in the extreme range, and will stay that way for a while. So I’m optimistic it’s just allergies. My lungs sound clear with no dead spots, no wheezing, just normal breath sounds. And that’s another relief because the primary tumor had caused lung collapse in the left upper lobe that has since re-inflated.

Now because the CEA is going down, and if it continues to go down or remain stable, I won’t need to have the PET/CT scan until after another 2 or 3 treatments – another relief. And I’m glad I picked the Medicare plan I did, because there are no co-pays and no deductibles; those were adding up a lot on my old insurance.

So today is all good news. And my rose bushes are budding like crazy!

Funerals

I was watching a TV show the other night where one of the characters went to a relative’s funeral and was the only one who showed up. I remember thinking how sad that was. Evidently the relative was a bitter, angry, nasty, person and had alienated the rest of the family. And that got me thinking. (Don’t you just love it when a word, a phrase, a TV episode, triggers a blog post?)

I sometimes wonder what life will be like without me in it. I know the world won’t stop. There is just so much I still want to do, so I have no intention of dying any time soon, but I’m curious about what it will be like. Will my dogs miss me (assuming I die before they do)? Will my partner find someone else? And how long will my spirit hang around? Will anyone know I’m there?

I don’t think I’m afraid of dying. I am afraid of what I’ll miss. Is that the same thing? I think I’m more curious than afraid.

Funerals are for the living to celebrate the life of the one who died. I know they can be sad occasions, but I think they should be celebrations. A time to remember. And as long as someone remembers the dead, they are not truly dead.

Until my death arrives, I think I’ll hang around and live the best life I can.

Hypochondria

I may have touched on this topic before, and if I did, I’m sorry, but here it is again. There are so many side effects associated with cancer and with chemotherapy that it’s hard to know what symptoms are from side effects and what symptoms aren’t. Sure, there is a whole laundry list of side effects for each chemotherapy drug; and there is a reasonable expectation that a particular combination will produce particular side effects. But what happens when the side effects are not part of the known ones? Does that mean I’m weird? Does it mean something else is going on not associated with either cancer or chemo?

The last time I met with my oncologist and told him some of my side effects, he stared blankly at me for a few seconds as if he couldn’t quite believe what I was describing. It seems he had never heard of what I was describing to him. And maybe he hadn’t. Maybe the side effects I was having were totally unique to me; or maybe others have the same symptoms just not in his practice. And that brings me to the hypochondria part.

Every time there’s a new twinge, ache, pain, or any other thing that’s out of the ordinary, it can set off a mild panic. What is this? Chemo-related? Cancer-related? Something new? Is it serious enough to call my oncologist’s office or should I wait to see if it goes away? And it doesn’t help that my brain is fuzzy so my reasoning can sometimes be a little off. I know my team has told me to call any time I have concerns, but I feel foolish taking up their time with something as trite as a small swelling on my neck that could just be from the weight gain. But then again, what if it’s something else? It seems silly, but I do agonize over these decisions. What if it’s nothing? What if it’s something? So I usually end up calling, and it’s usually nothing.

At this point, I’m thinking it’s better to call and find out it’s nothing than to not call and have it be something that should have been dealt with. I’ve come too far in the last 4 months to let anything stop me now. So I will continue to monitor myself, and I will call when something seems off. Even if I can’t quite articulate it. Because who knows me and my body better than I do?

Now what?

I had my first round with Pemetrexed yesterday, and so far no side effects. But I am feeling extremely jittery – probably because I had to up my dose of Dexamethasone to twice a day for 3 days instead of the 1/2 pill the night before and morning of chemo. Then I got a call from the oncologist’s office saying that the radiologist’s report on the CT scan showed some breast changes and I need to go get a mammogram. I can’t begin to describe how devastated I felt at that phone call. Now I know it may be nothing, but I also know that it’s unlikely to be metastasis from the lung. So now I have to wait for the mammo to be scheduled, and then I have to wait for the results, and then who knows. I’m really trying to stay positive, but it’s very hard after this latest news.

Keeping my fingers crossed that it’s just increased density because of age.

 

Scanxiety

I didn’t coin this term, but it is the anxiety that ramps up prior to the next CT scan to check on the progression, or not, of cancer. Mine is scheduled for Monday; today is Saturday, so the anxiety is already there no matter how I try to minimize it. There is the hope that the tumors have reduced in size since the last scan; and the fear that they didn’t. If they did, then all is well, but if they didn’t, then what’s next? I admit to not only anxiety, but a little depression, too. It’s difficult to keep a positive focus all the time, and I occasionally find myself almost reduced to tears. And the anger; can’t forget the anger. Those emotions are all kin to each other and feed off each other and make each other worse. And I know it’s a downward spiral and hard to stop once it gains momentum, so I can’t let it gain momentum and usually don’t.

And on a related note, the more I read in journals and from other lung cancer patients on support sites, the more I feel overloaded.  My brain races a mile a minute at times, and I find it hard to slow it down. So many options that depend on so many different things. Since I am the one responsible for my care then I must be the one to be aware of what’s available. I trust my Oncologist and my treatment team, but I still need to be able to have an intelligent discussion about available treatments, clinical trials, and the latest new treatment coming up on the horizon. It’s exhausting. Sometimes I wonder if my parents’ generation was right in always deferring to the doctor. And they didn’t have access to all the research out there on the internet. Maybe ignorance really is bliss. But as soon as I have that thought, I get rid of it. The information is out there, and I should be able to read it and understand it and be able to discuss it with my team members. So I just keep on going the best I can and trust that all will be well.