It’s a delicate balance, this living with lung cancer; between life and death, between treatment and quality of life, between disease and health.
It’s been said that we begin dying as we take our first breath, and we don’t know the hour or manner of our death. There is currently no cure for lung cancer. The best I can hope for is some time with NED (No Evidence of Disease), or at least no progression in the growth of the tumors in my lungs, lymph nodes, and liver, and no further metastasis. This disease may kill me, or not. I could die from something totally unrelated to lung cancer – getting hit by a meteor for example – or I could die from complications from the disease or from the treatment itself. Life is what we make it, and death comes to us all.
Quality of life will be different for each person. For me, it means having more good days than bad. It is having fewer days suffering the side effects than not. My new regimen has given me two bad days so far. Today is not bad at all, and the first day after treatment was good, so I’m batting better than .500 at the moment. And I won’t have another treatment for 2 1/2 weeks. So it’s looking good. Each person has to decide for herself what quality of life is acceptable and for how long. If I reach the point that I have more bad days than good, then my quality of life is suffering, and it will be time to reassess treatment vs. hospice care. But until that day comes, I intend to live my life as fully as I can.
Health is something I always took for granted, in spite of my bad habits in my younger days. I think we all feel invulnerable when we are young. We don’t think about unsafe behaviors, about dying, about chronic illness, about aging. We think we will live forever, even though in some part of our brain we know we won’t. Disease is an uncomfortable fact of life for many of us as we age. We are living longer these days, so more of us are suffering illnesses like diabetes, and high blood pressure, and heart disease, and various cancers. The pressures we live under for most of our lives has an effect on our health unless we learn to decompress at an early age. I didn’t know I was under so much pressure until I started seriously looking at my life and what I wanted it to be (somewhere back in my 40s – better late than never!).
So once again onward and upward. I will try to keep this delicate balance for as long as I can.
The CT scan I had yesterday shows my tumors are stable with little change from the last scan. We’re quite relieved! The plan now is to try Avastin only but at a slightly higher dose every 3 weeks. I’m happy to no longer have to take Dexamethosone, but I will have to take blood pressure medication (Lisinopril). It’s a trade off, but I’ll take it.
My onc doc and PA want to see how this works before doing molecular testing, which will require another biopsy. And I’m happy to go along with that. The last biopsy caused nausea and vomiting from whatever the drugs were they gave me, so I’m not anxious to repeat that experience. And the four hours of enforced inactivity before they’d let me go home wasn’t easy for me. I wanted to be up and out of there!
So once again onward and upward.
What a roller coaster ride this past year has been! This time last year I was sitting in my primary care doctor’s office waiting for the results of my chest x-ray and CT scan, knowing in my heart it was cancer, just not the extent of it. I remember driving home and wondering how I was going to tell my partner. The very next day, I met my oncologist. Then came a whirlwind of tests and appointments to discuss the findings, and then my first chemo treatment, which was not kind to me. And I don’t know how many chemo treatments since then. And somehow, I continued working; sometimes just a couple of hours a day. But I mostly used that time to train so that someone would be able to take over my duties, and that allowed me to retire in February.
The time since then has been sometimes a blur and sometimes has had too much clarity. But I have made it to the one year mark; many don’t. I have lost count of how many cycles of chemo I have had, and how many times I have cried, and how many times there were little victories. What has kept me going through all of this is a positive attitude, and my support system of sister-friends, family, and people who don’t even know me who have taken up my cause in their churches and prayer circles. I am so thankful for all of you.
Oh, and I almost forgot; today is Day 1,000 of my Gratitude Journal Blog – how cool is that?
I’ve been running a low-grade fever that spikes up at night. It started Monday evening after I had to take Immodium, continued yesterday, so when my temp was normal this morning, I was happy. Until lunch time when it started edging upwards again. I have also been feeling achy and don’t-touch-my-skin sensitive in late afternoon and evening. I called my onc doc’s office, and of course they told me to come in, and of course my temp was normal when they checked it (but I had taken Tylenol). My PA ordered blood work and my white count is dangerously low and I’m a little anemic. We decided that what I maybe have is viral and not bacterial based on my symptoms. And a viral infection can lower the white count.
So I got another Neupogen shot. I’m hoping that since the dosage of this one was lower, I won’t be in as much pain as I was after the last one. I have strict instructions that if I feel worse, or if I start getting chills, or if I start feeling dizzy, I’m to call 911 and get to the E.R. My white count was low enough to possibly allow life-threatening infection. I didn’t wan’t to take the shot, but after she told me that, I decided it’s probably a good thing to do. We decided I don’t need antibiotics this time as all evidence points to this being viral.
Now I’m at home, taking Tylenol every four hours, checking my temperature, drinking fluids, and hoping I don’t get chills or start feeling dizzy.
Onward and upward again!
For the past week or so, I have had a return of discomfort in my left side and a dry cough. Both of these are usually indicators that something is going on with my lung tumors and were the original symptoms that sent me to my doctor. My PA called today and said that my CEA is indeed up, and that’s a good sign that the tumors are growing – the CEA isn’t necessarily indicative of what’s going on, but it does work that way for me. So I will be scheduled for another CT scan in the next couple of weeks and then maybe meet with my onc doc to see what the new plan is going to be.
I also am having some neuropathy, but in a weird way. It’s only on my left hand, in the area between my 4th and little fingers. It started out feeling like I had a cactus spine stuck in there, but there’s nothing there. And there’s some achiness on the sides of the fingers around that area. I don’t have any tingling, numbness, or any other neuropathy symptoms. I thought it might just be arthritis, but my PA says that the chemo would suppress the inflammation response for arthritis, so she’s sure it’s neuropathy and not arthritis. Lucky me!
Today, the side effects started early with achiness and feeling generally out of sorts and a little weepy. I’m trying to stay busy with searching for and printing knitting and crochet patterns and plan to do some test projects, just to make sure I haven’t forgotten how to knit or crochet. It’s been such a long time since I’ve done either one. And I’m not sure how that’s going to work with the neuropathy; guess I’ll find out.
I’m not feeling very encouraged right now, even though I know most of that is the usual post-chemo depression. It’s always up and down. But at least next week is an off week, so hopefully I’ll have more energy then and won’t have side effects to deal with. It doesn’t help to hear the news that another member of our lung cancer community has died, even if it’s someone I didn’t know personally. Every death leaves another hole in my heart. But on the other hand, there is always news of someone reaching another survival milestone, or of a new drug that is showing promise in clinical trials, or a new treatment that has completed trials and is pending FDA approval. I try to stay positive, because wallowing in self pity doesn’t accomplish anything and just saps my energy. My hope is to keep going until there’s something that will be better than the current chemo regimens I’m going through.
So I’ll continue onwards and upwards.
So here I am the day after chemo, and the side effects are already starting. For whatever reason, my brain seems to be functioning worse than before. I’m having a hard time concentrating – harder than usual. I can’t read a long paragraph without losing the thread half way through. And forget trying to find the right word when I’m speaking or writing. I often have to leave a blank when writing and go back to it. I hate that part most of all. I’m a language/grammar/literature nerd, and not being able to read and write without putting a lot of effort into it bums me out. I used to be able to hammer out paragraphs and paragraphs of fiction in one sitting. Without having to edit much. Now, I can’t even write one paragraph for my blog without slowing way down and re-reading every word several times before hitting the publish button.
The depression is also hitting hard this evening. I know it’s the chemo and the steroids – much of the steroids are the extra ones I’ve had to take along with the antibiotics for the aspiration pneumonia I suffered a week ago. I’m still taking oral antibiotics through Saturday, and have one more day of the steroids. The good news is that my lungs have cleared, and I’m not coughing up a bunch of junk any more. And the wheezing has stopped, so no more giggling at the weird sounds coming from my chest. Spud appreciates that too as the noises seemed to disturb him. His responses were funny and kept me giggling so hard some nights I kept myself awake.
Other side effects, like the numbness in my face and the mucous membrane soreness and pain aren’t as bad because my dose of Taxol was reduced a little. But I’m still having them. I can put up with all of that as long as I know the drugs are doing what they’re supposed to do. And so far they are.
There have been some adjustments made in the other meds I’m taking – my diuretic was increased because the Avastin was causing my blood pressure to start creeping upwards, and the medication for my acid reflux has been doubled. I notice the reflux is worse on chemo day and the day after and then gets better. But I’m still having to sleep sitting up, which doesn’t make for a very restful sleep. I wake up dragging, and even napping during the day doesn’t help. I’m hoping the increase in the meds will help.
So basically I’m still here, and rapidly approaching my one year anniversary of diagnosis. One part of me still can’t believe I have lung cancer. And there are days when I don’t want to see or read anything about lung cancer. But I’m a researcher by nature, and I can’t resist digging deeper when I see an article about a new trial, or a new treatment, or a new diagnostic test. Sometimes I feel detached from myself and my diagnosis, as if it’s happening to someone else. I have since learned that there are components of PTSD associated with a diagnosis of lung cancer, so that would explain the detachment. And it’s something I will explore further at some point. But for now, I’m just doing the best I can to be here in the now and take one day at a time. And I suppose that’s all anyone ever does.
Onward and upward!