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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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.

 

Cancer Made Me Paranoid

Yes, it did. Now, every new ache, pain, or twinge, has me scared that it’s more metastasis, or a weird side effect of chemo. No matter how much I tell myself it’s neither of those things, the thought still flits through my head. Headache? Must be brain metastasis. Backache? Must be metastasis to the bones. Stomachache? Well, you get the picture.

I think I have lost the ability to remember having those same aches/pains/twinges before I had chemo or cancer. It’s strange how our memory can play tricks on us. I wake up some mornings with my fingers asleep because of the position I was sleeping in, and then I get scared that it must be a side effect from the chemo. (One of the possible side effects is numbness of fingers or toes.) Of course, it’s gone within seconds of waking up and I know it has nothing to do with the chemo.

Sometimes, ignorance is bliss. If I didn’t know all the possible side effects, or how fast lung cancer can metastasize, would I be this paranoid? Probably not. But I do know. It’s important to know the side effects that could be a major problem; but then I worry that major side effects may mean changing the chemo regimen again, and I wonder how many times we can do that before running out of options.

So in the meantime, with every new ache and pain and twinge, I take a deep breath, tell myself that all is well, and go about my day.

Some good news

The MRI went well today with the IV sedation. No panicking at all, just a little antsy from not being able to move for 45 minutes. The meeting with the doctor went well, too. The MRI showed a ‘normal’ brain (as if anything about me is ‘normal’! LOL) and the PET scan shows only tumors in lungs and liver – nothing in bones, lymph nodes, or anywhere else. We are both feeling quite relieved, to say the least.

The doc also prescribed a new cough medicine – the dry hacking has been horrible and keeps my awake at night and the inhaler wasn’t working quite as well.

I am feeling more optimistic at the moment. Not knowing how extensive the metastasis is has been a major source of anxiety for both of us. Tomorrow I’ll have the biopsy but won’t know the results until we meet with the doc again late on Monday afternoon.

The MRI was at Oro Valley Hospital; neither of us have been there before but were both quite impressed with everyone we met. The architecture inside the building is beautiful and there are niches containing artwork throughout the main areas. Very impressive. The only fly in the ointment today was the sticker shock when I learned the insurance wouldn’t pay for this test because I still have to meet my deductible, which is pretty high. Fortunately, paying that bill won’t break us.

So onward and upward, dear friends!!

And so it begins…

First let me say I’m not writing this for sympathy or for attention; I’m writing this blog so that perhaps I can help someone else on the same journey, and so I can process my own emotions. And Second, this was not easy for me to write. I have been going back and forth about whether I should even publish this; there is no waffling about writing it, just about publishing it.

A few days ago, actually on Thursday, October 17th, at 4:10pm, I learned that I have lung cancer with metastasis to the liver.The following day, we had our first meeting with the oncologist. I learned that because the cancer has metastasized, it’s probably Stage 4, and there is no cure, but with chemo, we can hopefully shrink the tumors and extend my quality of life. I had blood work done and will still need to have a biopsy, a full body PET scan, and an MRI of the brain. Only then can we start chemo.

Looking back, I can see all the little signs I either missed or ignored. And I should never have started smoking and I should have quit sooner. But I can’t waste my energy on woulda-coulda-shoulda.

My doctor was wonderful – holding my hand as she gave me the news. The first thing into my head was how am I going to tell Steve? I knew on a gut level that I had cancer. What I didn’t expect was the metastasis. I made it home in one piece and then fell apart. It seems so unfair that I was looking forward to retirement and now the future is so uncertain.

Friday was a blur. I went to work like always and had to leave for a few hours for our meeting with the oncologist. He is a leading researcher in lung cancer and spent almost an hour with us after being an hour late because he spends as much time with each patient as that patient needs, and I like that. I went back to work but I’m not sure how much I got done because I felt so removed from everything.

There are so many questions, but they can’t be answered until all the tests are complete, and I’m impatient to start the fight. I think I’m still in a state of shock on one level while on another level I’m ready to fight. I know the odds aren’t in my favor – the survival rate for lung cancer is very low – but that is no reason to give in.

I have periods during the day when I’m fine but then the reality will hit again and I just want to scream and cry and hit something. I’m angry that my body has betrayed me; I’m angry at myself for not taking better care of myself; I’m angry that I may not have a chance to enjoy the retirement I dreamed of; I’m angry that my partner may have to go on without me. But I’m also trying to view this as a new learning experience.

I spent Saturday feeling sorry for myself, crying, or napping. I allowed myself one day for self-pity.

So I will continue blogging as long as I’m able, and I will continue my Gratitude Journal daily. That will force me to keep a positive attitude. 🙂

So peace, joy, and love to all. Hug those you love today.