I’m done with the radiation treatments – the last one was the day before Thanksgiving. But I’m not happy with how I’m feeling. I feel frail and off balance. As if I’ve aged 20+ years in the last 3 weeks of treatment. My throat is sore – every time I swallow it feels like I’m trying to swallow razor blades. If you’ve ever had strep throat you know what that feels like. No matter what I eat, it hurts to swallow. Except for ice cream after the first few swallows. And crushed ice. It even hurts to drink water.
I’m still off balance and listing to port. I am very careful about walking, especially in the house as Peanut has to lie down in the middle of the hallway so nobody can get past her without her knowing. I suppose that’s part of her herding instincts to know where everyone is at all times. But it sure makes it hard to get past her without tripping!
And the fatigue is awful. It’s way worse than any I had from chemo. I hardly have the energy to get out of bed and spend most days in my PJs. Afternoon naps are essential – and sometimes morning naps, too. I hate feeling this lethargic, but I keep hoping it will get better. I know it will eventually, but not fast enough for me.
I know these effects might be transitory – at least I hope they are. And I know there might be more side effects to come as the tumors in my brain die (they’d better by dying!!) And my hand is still tingly, but not bad. And it seems to get better then worse.
The worst part for me is the lack of focus and the inability to come up with the right word for something. For a writer, that is awful. I can laugh about it most of the time, but it’s still frustrating. I suffer from what I call butterfly brain; flitting from one thing to another without knowing how I got there or even if that is where I wanted to be. I’m trying to be gentle with myself, because I know these effects aren’t me. I have to take care of me. And Steve is being a big help. I am so fortunate to have him here with me; taking care of me; and taking care of the dogs and our home. I’m not sure I could have gone through all this without him.
Onward and upward.
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.
There really isn’t a whole lot to report. I did have horrible hip and back pain for 2 or 3 days from the Neupogen. Tylenol didn’t help at all, and Vicodin just took the edge off. I had to take that every 4 hours for 24 hours just to get some relief. I don’t like taking strong pain pills, but I was in agony. Even though the Vicodin only took the edge off, I wasn’t willing to take anything stronger, so I just slept a lot, which helped.
This week, I’m feeling normal. I have so much energy! Yesterday I reduced the paper pile in my office and discovered there really is a desk and credenza right here. I now have one smallish pile instead of 4 or 5 big ones. Today we cleaned out the sewing/laundry room, which had been used to put stuff we didn’t know what to do with or that we didn’t want to deal with. We found stuff in there we had been looking for! I still have to organize everything into the containers I bought some time ago with the intention of getting organized, but at least the counter and cabinets are visible. I ran out of juice about half way through the project. So it will be finished tomorrow. And then we tackle the guest room, which has also been used as a dumping ground for stuff.
I have been checking my blood pressure twice a day, and it’s higher than it normally is, so I’m not sure what’s going on there. But at least it’s not in the danger zone like it was. I will check in on Friday for blood work and a pneumonia shot. Then go back on Tuesday for my next round of chemo, providing all signs are good.
I am really enjoying feeling normal and having energy. And I’ll probably feel this way for another week. So I’m enjoying it while it’s here.
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. 😀
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.
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.