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.
I have had a troubling cough for a few weeks now. It could be related to chemo; it could be allergies; it could be that the one tumor’s growth is constricting airways. I’ve been able to tolerate it okay until the last couple of days when it woke me in the middle of the night coughing so hard I almost threw up. I got out my homeopathic cough medicine that has helped tremendously, but I have to take that every 2 hours, which makes it hard to get a good night’s sleep. I have some cough medicine with codeine that I don’t want to take unless absolutely necessary; it makes me dopey and constipated and that I don’t need right now. I finally took some just after lunch and slept away the afternoon. But I didn’t cough.
The fatigue I’m feeling now could be residual from the cough medicine, or it could be the side effects kicking in already from Tuesday’s chemo. I’m also feeling depressed and listless. I sometimes wonder whether all this chemo is really helping or hurting. When I have these dark nights of despair, I have trouble remembering the last time I actually felt good. My team is wonderful at coming up with solutions, but there’s only so much they can do. I do try to stay positive, but there are times when I wonder if all we are doing is worth it in the long run. And seeing others succumb to this disease makes me feel worse. Another warrior just entered hospice because treatments are no longer useful.
And again there’s the twinges and aches and pains that could be from the chemo, or new metastases, or the current tumors growing. It can be so trying. I know these feelings will pass once the fatigue eases. And in the meantime I have to just be patient. But it’s hard.
I told my PA about the face tenderness; of course she’d never heard of anyone having that side effect before. First she said maybe I should take the Dexamethasone for a few days, but then we decided to wait and see if it happened this time since I wouldn’t be getting the Avastin on this round – I’ll only get that every 2 weeks. And it was disconcerting to see my CEA had jumped up more than 20 points from the last one. I don’t know what’s going on, and I’m scared that things are progressing more than they should. I can only wait to see what happens after two cycles of this treatment when we do another CT scan. I’m finding it more and more difficult to be patient.
Steve keeps telling me to just be patient and things will work out, and I tell him he’s not the one going through this. He and I both know he wouldn’t be tolerating this anywhere near as well as I am. I know he wants me to feel better and to beat this, but I get so tired of fighting and wondering who is going to win, me or the cancer. It’s exhausting. I so want to feel better and to beat this, too. I need rest and a good night’s sleep.
Since my last treatment, I’ve been experiencing some things that I never would have associated with Pemetrexed. I suffer from dry eye – well I do live in a desert and I’m getting older – which tends to make my eyes burn and leak a bit. But I have been able to control the symptoms with eye drops. I also have allergies that don’t usually affect my eyes, except for the last couple of months they have been. Or so I thought. I have tried 3 different over-the-counter allergy meds over the last few months with no relief. So I started doing some more research on side effects from Pemetrexed. I found a few sites that mentioned the leaking, waking up with eyelids stuck shut, and burning sensations. So perhaps what I have isn’t allergies at all. Oh, and the sites were medical sites; one of them (http://cancergrace.org/forums/index.php?topic=5262.0) including doctors responding to questions and issues.
What I found is that 1-10% of patients have the watery, red eyes. And that same percentage have itching as I did after the last infusion. But what caught my eye is the statement that less than 1% could have a dry cough and shortness of breath. This information comes from a UK Cancer Research site (http://www.cancerresearchuk.org/cancer-help/about-cancer/treatment/cancer-drugs/pemetrexed).
I’m meeting with my oncologist and PA next week after my brain CT, so I must remember to mention these symptoms and the possibility that they may be Pemetrexed side effects. Of course, they could be totally unrelated. And I don’t think they’re severe enough to stop the Pemetrexed. I’ve had a 24 hour Holter, and today I had an echocardiogram. So if those are normal, then the cough and shortness of breath are probably not heart related.
And then there’s the depression that I struggle with that seems to be deepening. No matter how hard I try, I find myself losing ground a little more every day. I go to the gym, I try to keep my mind occupied with reading, puzzles, research, etc., but it no longer helps. Something else to bring up as a possible side effect.
But in the meantime, I will just keep going as best I can.
Depression is a strange creature. It can come out of nowhere, take the wind out of my sails, slam into me knocking me off my feet, and then disappear as fast as it appeared. There are days when I don’t want to even get out of bed. Those are the days I’m glad we have the furbabies, because I am responsible for their breakfast while my partner is up on the roof. Then he gives them dinner. I wake up each morning to a little furry body curled closely into mine and another one at my feet. What a wonderful way to wake up!
Today, I had to drag myself out of the house to the gym; the last time I went was a week ago. I knew I would feel better if I went, but the chemo knocked me on my butt last week, and I couldn’t shake the fatigue. I told myself yesterday that I needed to go, but could not overcome the inertia to even get dressed until mid-afternoon. Chemo causes fatigue, and feeling fatigued makes me feel overwhelmed, and that makes me feel depressed.
So today I did go to the gym for the cardio workout class. I felt pooped but energized afterwards – if that makes sense. And I think the last of the fatigue and depression are gone for now, so I expect to feel good for another two weeks.
My oncologist had mentioned on the last visit that he thought I might qualify for a clinical trial up in Phoenix, but then said maybe we should wait for the next CT scan in 3 months. But then on Friday I received a call saying I should set up an appointment to meet with the clinical trial people. So tomorrow we will drive to Phoenix to meet with them. It’s a 90 minute drive give or take depending on the traffic, and all interstate. I’m so glad we have a newish vehicle to go in! So today we topped up the tires, the fluids, and gas, and will embark on a new adventure. I don’t know if I will qualify for the trial, and I really don’t know much about the trial so we both have lots of questions. I hope the trip will be worth it.
I saw a segment on TV this morning that started my train of thought going. The segment was on the fact that those who express their anger live, on average, two years longer than those who bottle it up. I know that bottling up anger is bad for your heart, and for your health in general. I also know that years of suppressing anger can lead to a person exploding – i.e. ‘going postal’ as it was termed. That explosion can be catastrophic for not only the person exploding, but also those around him/her.
I was taught from an early age that expressing anger is not okay. We, as women, are supposed to just go along with whatever happens because it isn’t ‘ladylike’ to get angry. So we bottle up the anger and suddenly, sooner or later, we find ourselves depressed, or unhappy with our lives, or suicidal. Men are taught that expressing anger isn’t okay because expressing any emotion is not ‘manly’. So men bottle up their anger until they also find themselves unhappy, depressed, or attacking their loved ones or strangers.
I wonder if this is why we have mass shootings. Do these people just explode from bottling everything up for so long? Have they been bullied? Do they not know how to express what they are feeling? I don’t know the answer, but I do know that we all should learn how to express our feelings in a constructive way.
I don’t get angry very often; I’m an easygoing kind of person. But when I do get angry, I tend to spew words all over the place. I don’t yell; I don’t even raise my voice. The words are preceeded by a deadly calm quiet. My ex and my kids never knew when I would reach my limit, and it happens maybe once in ten or so years, so they never learned the warning signs.
Other people I know tend to rant and rave and jump up and down for hours when they get angry. And some people I know don’t express it at all. We need to teach our kids that expressing emotions is healthy and necessary, because if we don’t tell people how we feel, how are they supposed to know? I’m not advocating that we begin emoting all over the place, but to learn what and when it is appropriate to express ourselves and when it is necessary to just walk away.