I have had no side effects from the Pemetrexed maintenance dose I received 3 weeks ago. That’s the good news. I don’t know if it’s working yet, but I am scheduled for a second dose on Tuesday after routine blood work. I’ve been feeling almost normal and have more energy and stamina than I have had since I first started chemo at the beginning of November. I’m hoping that the maintenance will keep my cancer in check for quite a while so we can enjoy our retirement. My hair is growing back – at least on my head. I don’t see any signs of eylashes or eyebrows growing yet; maybe it will just take a while.
We have been able to go on what I call photo safaris each week, and we’re running out of new places to go. Daytrips are all we can handle at the moment, and besides, neither of the dogs likes going anywhere; they are serious home bodies. Who would keep the elephants away if they weren’t here?
So now it’s just a matter of waiting again. But I am feeling much more optimistic, even though my last CEA level showed a slight increase. It went up less than a whole point, but that was before the maintenance began. So now I’m anxious to see where it is. I’m just going to have to be patient! Not an easy task these days.
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.
For the last week or so, I have woken up during the night with hiccups. I have no idea why. Last night was particularly bad, though, as I woke up every hour or so. But during one of those ‘awake’ moments, I had a realization; for the past four months, my life has been defined by my cancer.
Most of my waking moments have been spent dealing with things having to do with cancer; insurance companies, appointments, chemotherapy, chemo side effects, and on and on. Fatigue and other side effects have severely curtailed the activities I thought I would be enjoying in my retirement. I spend time reading blogs of other cancer patients; reading research papers; looking for more promising research. And I have decided that I’m sick of allowing cancer to define my life. I feel as if I’m waking up from a dazed existence that began with those fateful words, ‘you have cancer’, and have continued ever since. No more. I’m taking back my life – I should have done this a while ago but needed the realization of what’s happening to be able to redefine myself.
Cancer isn’t disappearing from my life any time soon. It will always be there in some form, even when I show no evidence of disease. Cancer is insidious and can reappear at any time, or spread somewhere else. What matters now is that I intend to enjoy life more and put cancer on the back burner for now. I will deal with it as I have to, but I no longer want it to define me; I will define it. I have to make some allowances for fatigue, chemo brain, nausea, etc., but I will no longer make them my focus. They are there and will be there for a while. My focus is now on me and my life and my activities. I’m outlining my days based on what I wanted to do for my retirement regardless of what else is going on. I will write. I will go out and take pictures. I will play with our dogs. I will spend time with my partner. I will work in the yard and enjoy my flowers – when I have them. I will define my own life.
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?
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!
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.