A New Beginning

It’s been awhile since I wrote a post, and that’s a good thing, because it means nothing new. But now my scan date is approaching, and I find myself getting a little anxious already. I’m afraid that the cancer has grown, but I know the CEA level isn’t necessarily a good indication. Between now and Tuesday afternoon, I have to try to settle myself down instead of allowing my imagination to run wild.

On a positive note, I have started going to the gym. My Medicare Supplement Plan comes with a free gym membership, so I decided it would be silly not to take advantage of it. I am seriously out of shape and overweight. Some of it is inactivity and overeating, some of it is the steroids. Even if I don’t lose weight I will feel better, and I already feel more energized. There are lots of exercise sessions as well as Yoga, and Pilates, and water aerobics. I’m starting out easy with the ‘old people’ classes and will eventually, I hope, graduate to Zumba, because that looks like fun and I miss dancing.

 

I have been feeling off for the last couple of days; I just could not stay awake so took lots of naps. And I’ve been a little loopy; dropping things, unsteady, hungry all the time, upset GI system. Then it dawned on me – it’s the chemo stupid!! Since I have chemo only every 3 weeks now, I feel so good most of the time that when I don’t feel good, I forget what’s causing it. One of the side effects of the Pemetrexed (Alimta) I’m getting is severe fatigue, so yeah, I felt like I had to sleep a lot. Combine that with the GI symptoms (and I won’t go into details on that one!), and yeah, I’m going to feel crappy for a day or two. I should have it figured out by now that by the end of Friday of the week I get my infusion, I’m going to feel like crap. Now I have it figured out – until the next time.

The scheduler at my oncologist’s office called me Friday to set up a CT scan for my next visit, and to assure me that my PA had talked to my oncologist and they knew I was concerned about the increase in the CEA level, and that’s why they scheduled another CT scan to get a sense of what’s going on. I will meet with the oncologist right after the CT scan so there won’t be a wait before getting the results. I will also have my CEA level checked the Friday before my Tuesday appointment so we can discuss that at the appointment, too, and not have to wait until a day or two later to get the results. I wish there were a faster, better way to see what’s going on without having to wait to have tests, and then having to wait to get the results. I find the further into this journey I get, the more impatient i get. 

I also think I need to stop researching clinical trials and treatments. I normally like to be prepared, but I think I’m overloading myself and confusing myself about the options available. So I think I need to take a break for a while. And I need to get back to focusing on my writing; I have sorely neglected my stories for quite a while. What brought this home to me is a couple of new followers on my fiction blog; I haven’t added anything to it in over a year. Time to get in gear and write!

 

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. :-)

A young woman died yesterday of metastatic lung cancer; I am still here. Why? I don’t know why. I read almost daily of someone in our lung cancer community who has died. And for every one, I shed a few tears. But there are those who are still fighting, and I count myself among that number. I was diagnosed with Stage 4 lung cancer in October, and after 4 treatments with chemo, I am on maintenance therapy. I don’t know how long the drugs will work, and I don’t know what comes next. I only know that lung cancer kills more people than all other cancers combined, and that the funding for lung cancer research is woefully inadequate.

Why do some people survive and others not? I don’t know what the variable is. But sometimes I feel guilty for being on maintenance therapy and doing well when there are others who have reached the end of their options. And there are those for whom nothing works at all. I don’t know what makes the difference; I wish I did, and I wish I could give it to all of those on this journey. It isn’t fair that young women are dying of this disease; they have their whole lives ahead of them.

I know it isn’t up to me to decide who lives and who dies. And I’m glad for that. I spent many years as a nurse and saw what those decisions did to those who had to make them. I remember patients as young as 16 dying of cancer. But that was so long ago. Lung cancer treatment has advanced, but the survival rates are still abysmal. Is it because of the perception that only smokers get lung cancer? If so, we need to change that. More and more never-smokers are being diagnosed with lung cancer, and the diagnosis almost always comes when the disease has already advanced to the metastatic stage.

So one more death to make me sad and mad. And why am I still alive and she isn’t?

Jessica died last night; she was only in her 30s. RIP Jessica, and my prayers go out to her husband and family.

 

Keeping My Promise.

I seem to be doing okay on the maintenance chemo with Pemetrexed. I’m having some annoying GI symptoms, but not even close to what I’ve had before. I’m happy that my CEA level went down, and my hair is growing back. I even have eyelashes, short and stubby though they may be. And pretty soon, I’ll be back to having to shave my legs.

I’m getting impatient for my hair to hurry up and grow already. It’s still so short I can’t even tell if it’s straight, curly, or wavy. And it’s white with some darker strands here and there. But I’m just going to have to wait.

I’m still careful about what I’m in contact with until I’m sure my immune system is up to snuff. And I’m chomping at the bit to get to the gym for water aerobics, or some other gentle activity that will help lose some of what I’m calling my blimpie weight. Part of it is steroids, part of it is chemo, and part of it is inactivity as I’ve had no energy to do anything. But my energy is coming back, and I’m able to do a lot more. I have 3 rose bushes to care for now (a birthday present from my partner) and I’m enjoying being outside in the gorgeous Spring weather we’ve been having since Christmas. The heat of summer will be here soon enough, so I’m going to enjoy this as much as I can.

I know I’m not cured; I know my cancer is still there; and I know it could grow and spread again at any time. But for now, I’m planning to live a ‘normal’ life, whatever that may be. I’m not going to live as if I’m dying. I want to do the things we planned we would do when I retired. And I’m going to enjoy my life every day.

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.

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© A New Beginning 2006-2012. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Ruth Rainwater and A New Beginning with appropriate and specific direction to the original content.

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I have two more blogs; a Gratitude Journal, and my fiction. Please check them out here: Gratitude Journal and here: Sable Wings

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