Survivor Guilt

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?

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Status

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.

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!

The Waiting Game

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.

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.