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.
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?
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.
Yesterday went so well with chemo. My blood counts were good; my other blood work was incredibly normal; and my CEA is continuing it’s downward trend. I felt good, just a little tired and antsy from the steroids. I was even able to got to sleep at a normal time last night. Then everything changed. If you’re sensitive, you may not want to read the details of this medical issue…
I woke up shortly after midnight with the worst case of acid reflux I’ve ever had. It was so bad that I somehow aspirated into my lungs and was coughing so hard I threw up in spite of having taken my anti-nausea pill before going to bed. I was having a hard time breathing, and felt like my chest was on fire. But I couldn’t stop coughing and trying to clear the junk out of my lungs. This went on for at least half an hour and then subsided enough that I could catch my breath. But I was still coughing. I took cough medicine, Tums, and a different anti-nausea pill. I was finally able to get back into bed as long as I was sitting up and read for a while. Then I had to get up so came and played on the computer for a while. I was able to finally go back to sleep around 3 or 4 and slept until 9. When I woke up, I felt achy and headachy so checked my temperature; it had shot up to 99.8 – normal for me is 97.6 and under.
I was still having breathing issues, so called my onc doc’s office around 11:30ish. When my PA called back,I told her that on exhalation, I sounded like there was a sick cat mewling in my chest; she told me I’d better come in for a ‘cat’ectomy – gotta love that sense of humor!! She told me to come in right away for a CT scan as they were concerned about a blood clot in the lungs. I was sure it was more likely to be aspiration pneumonia from the reflux. The CT scan showed no blood clot, but no pneumonia either, but that wouldn’t be likely to show up for a couple of days anyway. So they gave me more steroids IV and an antibiotic IV. I have to go back daily for the IV antibiotic, and take the steroids orally every day for six days. And the CT scan showed that all but one of the tumors had shrunk – lagniappe!
But wait; there’s more!! In the infusion room, I used my foot to push in the footrest on the chair before I sat down. Except my foot slipped and I managed to rip off about 1/4″ of my big toe nail, which then wouldn’t stop bleeding – probably because of the Avastin and the daily aspirin. So I ended up having to have a compression bandage and an ice pack on my big toe, which continued to bleed for a good half hour. And Steve yelled at me for pushing the footrest in myself instead of asking him to do it. 😀
We were at the onc doc’s office from around 1 until 5:30 – we’re home now and my breathing is a little better. We’re waiting for the pharmacy to call to let me know my prescriptions are ready – more steroids and an inhaler to help my wheezing. And I have to take Tums 3 times a day in addition to the Omeprazole I’m taking twice a day for reflux. My breathing is a little better now, but I’m still coughing and wheezing, and my chest hurts still.
Never a dull moment, right?
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 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.
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!!
The week since my last chemo infusion has been rough. It took about 7 or 8 days for my body and brain to feel normal again. I think that was mostly because of the steroids more than the chemo itself.
Friday morning, I woke up so jittery I thought I was going to jump out of my skin. I couldn’t sit still; I couldn’t concentrate or focus on much of anything. The upside of all that was I never had the severe fatigue that usually hits on day 3 and/or 4 after chemo. Although I didn’t have the fatigue, I still had the general malaise and brain fog that usually comes with the fatigue.
By Wednesday of this week, I was feeling better, and by Thursday even better still. So 8 days after the Alimta and all those steroids. In retrospect, I should have insisted that I get stepped down from the steroid push because I know what could happen. I don’t know why my team didn’t bring it up either, and I don’t blame them; I think they were too concerned in getting me through the immediate crisis to worry about afterwards. But since they think I need to up my prophylactic dose of Dexamethasone for next time, I’m going to insist they give me a schedule for tapering off whether I have another reaction or not.
Yesterday and today were the closest to a normal day I’ve had in a while. My hair is growing back and actually is long enough that it looks decent; I’m back to having to use my tweezers on my chin hair; my GI system is good enough to deal with extremely spicy Cajun food.
Life is good.
Yesterday we met with my oncologist to get the results of blood work and the latest CT scan. The good news is that the tumors are stable and not growing or advancing. The not-so-good news is that my liver enzymes and CEA are still trending upwards. The other issues are my shortness of breath periodically – not related to any kind of exertion – and the edema in feet and ankles that is much more pronounced on the left leg along with a strange red, hot, sore, patch on the inside of my leg about half way up from my ankle. This seems to resolve slightly when I am taking the Dexamethasone and then comes back with a vengeance when I’m not taking the Dexa. So now the next step is an echocardiogram, a Holter monitor, and a brain CT w/contrast. I had a hard time with claustrophobia with the brain MRI, so he thinks the CT scan will be good enough. And we will wait 4 weeks before another treatment to give my liver a chance to recover from the chemo effects. And that will hopefully also bring down the CEA level, which he thinks could be because of the increase in liver enzymes. We’ll see.
Since my other blood work was fine, he approved me for the Alimta infusion as usual. We planned on being out by 3 and home by 3:30. Not so! The Alimta had just finished when I developed itching all over my torso, my head, my neck, and my throat. The nurse called my PA, who prescribed IV Benadryl, which stopped the itching for about 15 minutes before it started up again. Then I developed a rash on my neck and torso that itched like crazy. So to make a long story short, I ended up having more IV Benadryl and 3 different steroids IV. I had to wait until 5:30 before they would let me leave. None of the nurses, nor the PA, nor the oncologist, had ever seen a reaction like that itching and rash. Oh, and I forgot the lower back pain, which is a known side effect. The scariest part was the intense itching in my throat and nose – I have never had that before even with my worst allergy/hay fever attacks.
When the PA let me go home, she told me to double my Dexamethasone for last night and today. She said to make sure I had Benadryl on hand and to call 911 if my throat started closing up. Scary stuff! But I made it through the night without any further itching or rash, and had some decent sleep in spite of the jitters from all the steroids. I think I was just exhausted from not sleeping well the night before and the stress of the allergic reaction. She also increased my Dexa for next time to 20mg instead of 4mg before treatment.
So the saga continues…
The latest blood work shows that my white and red counts are normal and holding steady, which means my immune system is in good shape, and I have the green light for – sushi! Something I have missed so much since I started chemo back in November.
However, my CEA and liver enzymes continue to creep upwards, I’m having shortness of breath without exertion, and a dry hacking cough. The shortness of breath could be the Alimta, it could be allergies, it could by COPD, it could be any number of things. Same thing for the cough. But if they were caused by allergies, there should be a decrease on the days I’m taking the Dexamethasone, and there isn’t. The increase in liver enzymes and CEA could be related and could just be an effect of the chemo. So my next appointment will include another CT scan ahead of schedule. And if the symptoms get worse, I’m to let the team know and they might do the CT scan even sooner.
I’m feeling okay, so I’m thinking there probably isn’t anything going on with the cancer just now, but the symptoms are troubling anyway. I didn’t sleep well at all last night because of the Dexamethasone, and that med upped my pulse and BP today. But my O2 saturation levels are maintaining at around 97%, which is great.
So I’m basically in another holding pattern, but staying positive. And now it’s nap time!