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.

What price life

I can understand why some people decide to stop chemo and let cancer take its course. Chemo can be brutal, even the ones with lesser and fewer side effects. After a while, the routine gets in the way of life. Problems arise that throw off the chemo schedule – low blood counts, problems with veins, issues with power ports. All of this can make one irritated and tired of dealing with it. Then there’s all the financial issues associated with chemo and cancer – will I be able to work? If I can, will my boss make allowances for my frequent absences? If I can’t work, how will I pay my bills? Side effects get progressively more intense the longer one is on chemo; it’s cumulative.

I am not going to stop chemo. I’m just saying I understand why people do. My tumors are shrinking, so the chemo is working, and it’s worth it. But for some people, the chemo doesn’t work, or it stops working after awhile, and they eventually run out of options. Or the side effects are worse than the cancer. Or their insurance doesn’t cover the cost – or there is no insurance. There is palliative care, which merely controls the pain, nausea, and whatever other symptoms caused by the cancer. This isn’t hospice but just a way to make the patient comfortable.

I feel so fortunate and blessed that I have insurance, and it’s paying for all of my care, and the chemo is working, and there are ways to deal with my side effects.There is still that depression and hopelessness that kicks in every once in a while. It makes me human. I can’t help but wonder what the future will hold, especially after a day that’s more grueling than usual. How long can I keep this up? How long before the chemo stops working? Cancer tumors are like the Borg – they adapt. So I will just keep envisioning those photon torpedoes attaching the tumors; and the light shining into the dark centers and dissolving them. I will be like Thomas the Tank Engine and keep telling myself: “I think I can; I think I can…”

 

Dark night

There are times when I wake up at night and wonder why me? I know that isn’t a good question and that there is no answer, but I ask it anyway. All I wanted was to be able to enjoy a few years of retirement doing something I enjoyed instead of toiling away to earn a living at jobs that were mostly unsatisfying and soul-crushing. I was good at my jobs, but grew bored quickly; then the jobs became a chore. I have been working since I was 16 – not always full-time – but I’m weary of working. Bone tired. So why can’t I enjoy a few years of leisure to compensate?

The middle of the night is probably not the best time for philosophical meanderings for me. I only sleep for 2 or 3 hours at a time before waking. Very rarely do I sleep for solid chunks of 4 or more hours. Part of this is because the dogs tend to wake me when they want to go out. Since one is getting elderly, she’s 12, and the other has a history of ‘marking’, if they want to go out, I let them out. What’s weird is that if Steve asks them if they want to go out, they just nestle further into the bed covers (yes, they both sleep in bed with us!) but as soon as I ask the same question, they’re running for the doggie door, which is closed off at night.

Lots of things go through my brain in the middle of the night. Things like will it bother me when I lose my hair? How long do I really have of a quality life before the cancer kills me? It isn’t fair that I have to deal with this; I want the opportunity to dance at my grandchildrens’ weddings. I want time to finish writing all the stories in my head; I want time to be able to go to all the places I haven’t been yet – or at least some of them.

I don’t know how much time I have; I may not know for quite some time. Everything hinges on how well the chemo works. And I’m not sure whether or not I want to be on chemo for the next several years.

Then I tell myself that nobody really knows how long they have to be on this earth. So I will try to make the most of whatever time I have left. I will continue to be grateful for every day I open my eyes on this beautiful world we live in; I will continue to be grateful for family and friends; I will continue to be grateful for whatever opportunities I have to have fun. And I will do these things for as long as I am able.

Whining, and other nasty habits

We all know them; those people who are always whining about something. Or talking about how unlucky they are. Or extolling the virtues of having nothing good happen to them. I have a friend or two like that. They wear me down if I listen to them too long. And, I’ll admit it, there are times I want to slap the whine right out of them. I want to rant and jump up and down on their heads and tell them how good they have it compared to some other people I know. I don’t know what makes some people so negative while others are always positive no matter what happens.

I have to think about my own life and how negative I used to be. When I hear my friends whining about inconsequential things, I think back to when I was younger – was a a whiner like that? And the answer is, yes, I probably was. I felt so beaten down by my life that I couldn’t see anything positive. I did manage to change how I thought, and I try to help others to become more positive. But I forgot that in order for someone to change, s/he has to first realize there is a reason to change, and then has to want to change. There are people who are perfectly happy being miserable – my mother was one of those. So they are not going to change.

I have one friend, I’ll call her Karen, who is going through a difficult time right now. She has cancer, no job, and no health insurance. She could so easily fall into the pity pot and whine and cry; but she didn’t. She set out to find how she could get her life saving surgery and gathered up an impressive support network. I know she will be fine.

I have another friend, I’ll call her Kathy, who has a wonderful life. She has a good job, a strong family connection, and friends all over the world. But she is constantly whining about how she can’t find a good man; about how the only luck she ever has is bad luck; and how some of these bad things ‘could only happen’ to her. She doesn’t really believe she has any worth, and she will continue to attract negative events and people to her.

I truly believe we teach people who to treat us by how we treat ourselves. Karen has friends who would do anything for her; Kathy has friends who will continue to use and abuse her. The only difference between these two people is their attitude about life and their expectations about how life will treat them.