Life Defined by Cancer

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.

 

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.

 

CT Scan

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!

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.

Courage

…not all great acts of courage are obvious to those looking in from the outside.
― Mia Sheridan

This particular quote really struck a chord with me today. I chose it as today’s tweet some time ago – I gather quotes and schedule them to be tweeted at some point in the future. I didn’t give this one a second thought until today. Courage is often thought of as the ability to do great deeds and save someone or something, but it is really living in the day-to-day circumstances over which we have no control. It is living with excruciating pain on a daily basis and yet having a smile on your face. It is knowing your cancer will kill you, yet living a full life and laughing in the face of death. It is knowing that every step will send shooting pains through your whole body, yet walking the path anyway. It’s easy to see courage sometimes; those who rescue people from a burning building or vehicle, for example. And we see examples of courage every night on the evening news. It’s these quiet instances of courage we don’t see.

Since I have been on this journey, I have ‘met’ so many people living with cancer who show great grace and humor. On the dark days I sometimes have; when the pain seems too much to bear; when I know this cancer will kill me; when I despair of ever being able to control my life again; that’s when I remember those I have met who are also traveling this dark path yet are scattering light along the way for those of us who follow along. I salute you.

Caregiving

I realize I haven’t said much about those brave souls who unexpectedly end up as caregivers for those of us with cancer. My partner is one of those. He thought that he would be the one to have the lung cancer because of his years of working around chemicals and dust and of smoking. But so far, he’s fine.

When he found out my diagnosis, he was upset, understandably. I think it’s harder for men; their attitude is to fix anything that’s broken, no matter what it is. Steve can’t fix this cancer, so he feels useless and doesn’t know what to do. He wants to do something to make the cancer go away and can’t, and that is so difficult for him. I think women generally handle these things better than men do; after all, most of us have been raised to be caretakers – of spouses/partner, children, then grandparents and parents – so caring for an ill partner is just another caretaking job. Men are generally fixers; if something isn’t right, they want to fix it.

I worry about his mental health and have tried to encourage him to find a group for caregivers that might help him. But I don’t think he’s made a move. Just talking to others going through the same process can help, whether for caregivers or patients. I know it helps him to have lunch with his guy friends and he talks to other friends a lot, but they aren’t in the situation he’s in, so I wish he would find some support from people in his situation. I can’t make him do it.

So what he has done is take over all the house chores; cleaning, cooking, laundry, feeding the dogs, taking them to their appointments, and chauffeuring me to all my appointments, picking up prescriptions, and ferrying lab and x-ray results to various places. For all of this I am thankful.

I know some of what I have written is all generalities about how men and women handle the situation, and I’m sure there are exceptions. I have noticed the patients in the infusion room are mostly women with a smattering of men. The men tend to settle their partners in then wander off for a while; the women mostly stay and chat. A couple of the men do stay with their partner for the whole time, but look totally bored. There is some conversation with the other men and with the nurses, but I get the sense that the men don’t want to be there. We women will chat with each other comparing notes on treatments, side effects, how to handle them, hopes for the future, any topic you might discuss over lunch. The men tend to make jokes about anything and everything and in some cases, I get the feeling that that is their coping mechanism.

I can’t address all male caregivers, obviously, but the ones I know do have a hard time because they can’t ‘fix’ this; and the women caregivers I know seem to take it all in stride. Men may see asking for help as a weakness and so often don’t take advantage of the support groups. But I have a feeling if they would just try it once, they would realize the benefits. So I will keep trying with my partner to get him to at least check out one or two. What can it hurt?