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.
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!
We spent about 4 hours at the doctor’s office today for first blood work, then a CT scan, then a meeting with my oncologist. The scan looks good. There was no change in the size of the primary tumor in my left lung, but he thought it might be scar tissue given that the secondary tumors, the largest of which is in the liver, did shrink. And, my left upper lobe has re-inflated; it had shown as collapsed on the previous scans.
So what does this mean? It means I begin maintenance therapy tomorrow with Pemetrexed. This had been part of my first chemo series along with Cisplatin, but my side effects were so severe that they switched me to Carboplatin and Paclitaxel. I have had a total of 4 rounds of chemo. My oncologist seems quite optimistic that the Pemetrexed will keep the tumors in check and may even reduce them further. And he thinks that the severe side effects were from the Cisplatin and not from the Pemetrexed. The down side is that I will be back on higher doses of Dexamethasone, which makes me jittery and unable to sleep. But if I only have to take it for 3 days out of every 21, I’m not going to complain!
I will have another PET/CT scan in 6-9 weeks, depending on the CEA levels (tumor markers). If the CEA continues to go down or stays the same, we will wait 9 weeks; but if the CEA starts going up, we will do it sooner. Here’s hoping for 9 weeks!
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.
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.
Happy New Year to all you beautiful people who have helped make my 2012 so interesting. May love, peace, and joy, accompany you on your life journey.
Why keep a Gratitude Journal, you ask? Well, maybe you didn’t ask; but I’ll tell you anyway. In a world of negativity, it is extremely difficult to keep a positive attitude. Wars, the negative political climate, economics, unemployment, hunger, etc. can weigh us down and make us feel that life isn’t worth living. I’m here to tell you that life is well worth living. There are so many good things happening, and there is beauty all around us, if we would only see.
It’s easy to sit on the pity pot and ask why me? It’s a lot harder, at least at first, to ask why not? When good things happen, we seem to take them for granted and only pay attention when bad things happen. Let’s change that. I have been keeping my Gratitude Journal online for over four months, and before that, I kept one on paper. It has made a tremendous difference in my attitude; and that’s what life is – attitude. We can’t change or control outside events, but we can control how we react to them. When we are surrounded by negativity we can do one of two things: we can allow that negativity to consume us and drag us down; or we can continue to be positive by focusing on what is good in our lives.
I only post 3 things every day that I am thankful for, and some days it’s hard to find even one. I don’t think anyone is immune to the negative clouds wafting in our direction every day. But once I start writing I find it’s sometimes hard to keep the list to only three. I invite you to view my Gratitude Journal at: http://newbeginninggratitudejournal.blogspot.com/ and perhaps even start one of your own. The items on the list don’t have to be big things.
One day, I was stuck in traffic coming home from work. I have learned to be patient and not lose my cool about taking longer to get home. When I pulled up to the last intersection by my house, an accident was in the clearing stages. If I had been on time driving home, that could have been me being carried away in an ambulance after my car was totalled. So it’s all in how we view things.
Maintain an Attitude of Gratitude!