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. :D
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?
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. :D
I am an ordinary person living an ordinary life. And I have lung cancer.
My life is just like anyone else’s; I laugh, I cry, sometimes hysterically, but I am an ordinary person. And I have lung cancer.
I have hopes and dreams and plans, but I am an ordinary person. And I have lung cancer.
I get up in the morning and go to bed at night. And in between I do laundry, I grocery shop, I read, I play, but I am an ordinary person. And I have lung cancer.
I am not a hero; I am not more courageous than anyone else, but I am an ordinary person. And I have lung cancer. It does not have me.
Today’s visit to Oncology went sort of smoothly. My PA was concerned about side effects and the extended duration of them, but we agreed that the severity may have increased because last week was an Avastin week (I get it every 2 weeks in addition to the Carbo and Taxol) and that may have made the side effects worse. The plan is to see what happens this week without the Avastin and to call in if there is worsening or additional severe side effects. I’ve given up searching to see how many people have the same side effects because the percentage is usually extremely low. ::SIGH:: It isn’t always fun being an outlier.
So what were the side effects this time you ask? Okay, I’m putting them all in this paragraph so you can skip it if you’re tired of my litany of woe. I had talked before about feeling as if all my neurons are firing randomly. Well this time was more like stabbing pains all over. They didn’t last long, but as soon as one area stopped another started. And the soles of my feet hurt when I walked – but only if I was wearing shoes. Walking barefoot made it more bearable. My left ankle hurt – but only the left one – and my right leg felt tight. You know that feeling when your skins dries and you forgot to put lotion? Yeah, that. So the ankle and leg issues might not be side effects but something else. But having them kick in with the side effects wasn’t fun. Normally the side effects are gone after two days, but these lingered through Thursday, Friday, Saturday, and at least half of Sunday. Yesterday (Monday) was the first positive energy day since last Wednesday. Okay – done.
My port is still acting up. No amount of repositioning my body or contorting my arms and head or almost standing on my head got any blood return. My PA told the nurses to give me the option of having the flush done again or just do the infusion as usual. As soon as the nurse called the lab to come draw blood, she was able to get a flash of blood but that was it. So I was quite comfortable in having the infusion without the Drano stuff. And everything was fine. The blood draw was smooth – no problem hitting the vein on the first try. And my blood counts were good. I won’t have the CEA results for a couple of days, but it has been trending downward, just not as fast as I would like. But I’ll take the decrease!
I’m tired of finding hair everywhere, so my friend is going to shave my head again. There’s no point in trying to grow it back until I’m done with the Taxol. Hoo boy. It still depresses me that my hair is falling out. I know it will eventually grow back, and I know there are advantages to having no hair, but still…
So I guess things are okay. Except for the side effects lasting just over 3 days, and the severity of the stabbing pains, and losing my hair, and okay, no more whining.
No, I’m not even close to dying yet. But preparations need to be made anyway. I have been putting off something as simple as a Living Will. Because if I actually do it, then I’m acknowledging my own mortality. My partner and I have talked about preparing, but neither of us has done anything about it. There are so many things to think about besides the Living Will. There is all the minutiae such as web sites and passwords. I am all over social media; he isn’t and doesn’t have a clue about Facebook and Twitter and Klout and all those other sites I’m part of. There are family and friends to notify. Dogs to take care of. The mortgage on the house. The car. Memberships in things like Amazon and Goodreads. So much to do.
Life can be gone in a heartbeat. It could be a car crash; a flash of lightning; a sudden heart attack; a ruptured aneurysm. Life is fraught with danger. But if I don’t prepare, then I won’t be ready, and I won’t die. Magical thinking I know. But I have no other reason for putting off what I know needs to be done. And there is so much to think about like cleaning out files so the survivor doesn’t have to do it. Deciding who gets what possessions. Going through the picture album and writing down who is in the pictures so that future generations don’t have to guess. So much to do.
I need to go make a list…
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.