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!
My visit to the oncologist on Tuesday was a disappointment. My white count had tanked and my blood pressure was way high, so chemo is postponed for two weeks. I thought the high blood pressure was because of the Dexamethasone – it’s always high on infusion days – but my PA and the oncologist thought it was the Avastin. So I’m now checking my blood pressure a couple of times a day, and today it was back to my normal. I did get a shot of Neupogen to help with the white blood cell count, so by the time I have my next blood work (a week from Friday), the count should be back to normal and I should be able to get back on schedule for chemo the following Tuesday.
I have mixed feelings about the delay. I welcome the relief from side effects for a couple of weeks, but I’m also afraid that the tumors will grow during that time. Maybe that fear is irrational; I don’t know. I can’t control what’s going to happen, so I just have to trust that it won’t be too bad. In the meantime, I hope to use the extra energy I will have to take care of some of the things on my to-do-when-I-retire list, which seems to grow every day while very little gets crossed off.
Where there’s life, there’s hope. 😀
We met with the oncologist today and the news is generally good. My CEA is down, my liver enzymes are down, but one tumor in my upper left lung grew while the rest of the tumors shrunk – what?? Since this tumor grew and looks like it might be wrapped around a couple of airways, it might explain the cough I’ve been having, or it could just be allergies. Who knows? And there is some liver damage – probably from the chemo – but since the liver enzymes are coming down, it’s probably not serious at this point.
We now have a new plan of attack; we are going back to the Carboplatin and Paclitaxel that was the 2nd round of chemo treatment, and we are adding Bevacizumab (Avastin) every two weeks. I will be going in for 3 weeks out of 4 again for a long day of chemo – about 5 hours or so. It’s a good thing they have WiFi!
I’m feeling relieved, but pissed that I was just getting a good head of hair and now it’s going to disappear again. And it’s summer so wigs are going to be hot! I know the hair won’t go right away, so maybe I can make it into cooler weather before it does. And it means more steroids – just what I need is more weight gain!!
And if this works without any major side effects, Avastin can be used for maintenance. So overall I’m feeling pretty good. And relieved!
Onward and upward!!
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.
I have been feeling off for the last couple of days; I just could not stay awake so took lots of naps. And I’ve been a little loopy; dropping things, unsteady, hungry all the time, upset GI system. Then it dawned on me – it’s the chemo stupid!! Since I have chemo only every 3 weeks now, I feel so good most of the time that when I don’t feel good, I forget what’s causing it. One of the side effects of the Pemetrexed (Alimta) I’m getting is severe fatigue, so yeah, I felt like I had to sleep a lot. Combine that with the GI symptoms (and I won’t go into details on that one!), and yeah, I’m going to feel crappy for a day or two. I should have it figured out by now that by the end of Friday of the week I get my infusion, I’m going to feel like crap. Now I have it figured out – until the next time.
The scheduler at my oncologist’s office called me Friday to set up a CT scan for my next visit, and to assure me that my PA had talked to my oncologist and they knew I was concerned about the increase in the CEA level, and that’s why they scheduled another CT scan to get a sense of what’s going on. I will meet with the oncologist right after the CT scan so there won’t be a wait before getting the results. I will also have my CEA level checked the Friday before my Tuesday appointment so we can discuss that at the appointment, too, and not have to wait until a day or two later to get the results. I wish there were a faster, better way to see what’s going on without having to wait to have tests, and then having to wait to get the results. I find the further into this journey I get, the more impatient i get.
I also think I need to stop researching clinical trials and treatments. I normally like to be prepared, but I think I’m overloading myself and confusing myself about the options available. So I think I need to take a break for a while. And I need to get back to focusing on my writing; I have sorely neglected my stories for quite a while. What brought this home to me is a couple of new followers on my fiction blog; I haven’t added anything to it in over a year. Time to get in gear and write!
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.
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?
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.
This week has been a little strange. Not in what has happened but in how I am feeling. I feel as if I am just drifting through life; there’s a sense of unreality inside my head. I don’t know if this is a reaction to my cancer or a side effect from the chemo. It’s hard to explain. I seem to be on auto-pilot much of the time as if I have no control over changing course. Oh, I am having such a hard time describing this! Sometimes I find myself sitting at the computer just staring at the screen with no idea what I was aiming to do. Other times I will think about something I need to look up but as soon as I sit at the computer, my brain goes blank. I don’t like the feeling of not being in control of my brain and my mind. It seems easier to drift right now than to exert the energy to do something else. This waking dream world is what it is, and I don’t seem to realize that it is a dream world sometimes.
I am now three months out from my diagnosis, and I’m used to when and how the chemo side effects will hit me. But I’m tired of organizing my life around the side effects. As I wrote in a previous post, I can understand why people stop chemo. It’s a struggle to stay positive some days; other days I don’t have to think about being positive – I just am. I know this is an emotional roller coaster for me and for my partner. He is my rock through all of this. He makes sure I take my medicine when I’m supposed to. And he’s always checking that I’m okay if I get up in the middle of the night. He takes care of the dogs, the cooking, the cleaning, and everything else that goes along with keeping a household running.
I hold on to the thought that I can beat this; that the chemo is working; that the cancer is retreating. Even in my dreamwalking, I am aware of that nasty growth in my body that is trying to strangle the life out of me. And in those times, I try to visualize the tumors retreating and vaporizing into nothingness. It’s only fair; that’s what they are trying to do to me.
I take strength from not only my community of friends, but also the community of lung cancer survivors to which I now belong. Some are still fighting, some have lost the fight, and some have won the fight. But the fight is never really over; we will have to be vigilant for the rest of our lives lest the beast returns to make us fight again.