Bump in the Road

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

Courage

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.

Ups and Downs

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.

Preparing for Death

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…

Despair and the Dark Nights of the Soul

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.

New Side Effects

I had no major reaction to the chemo on Tuesday, but they wouldn’t use my port because of some transient pain and then stabbing pains after accessing and flushing it. Accessing it gave a good blood return, and they were able to fill up all the tubes they needed for my blood work. But I had to wait to have a Port Dye Test to make sure everything was okay before they would use it for chemo, so we had to go back to the veins. It took 4 tries to get a vein that was good – twice the needle went straight through, and one vein blew as soon as she hooked up the IV. Fourth time’s a charm. :D

The dye test was fine, so I probably just have some inflammation or irritation or something. I’m glad the port is okay – I didn’t relish the thought of having to deal with a new one again. And I certainly don’t want them trying to access my pitiful veins again.

Wednesday was a good day, until late in the day. I started to develop ‘the achies’ as I call them; all over aching. I took a couple of Tylenol and went to bed only to be awakened in the middle of the night with the dreaded hiccups. These were bad enough to shake the bed – the dogs were not happy about that. I sat up for a while and they went away.

Thursday the achies continued along with the skin on my face hurting (I just report ‘em, I don’t explain ‘em!)and a lower back ache. And enlarged lymph nodes in my neck. My temperature was normal, so I just took more Tylenol and went back to bed. I spent most of the day reading and napping. By Thursday evening, I was starting to feel better, but still ached along with twinges as all my neurons decided to fire at random. Lovely feeling, that. I managed to eat plenty – to keep up my strength – and drank lots of water to keep my kidneys functioning, and that meant getting up every hour or so to pee.

Friday was marginally better. More twinges than aches and my face no longer hurt. And no more hiccups. So reading and napping again. But now constipation has set in again. Ugh! It seems a side effect for all these chemo drugs is either diarrhea or constipation. Luckily I have drugs for both so I’m covered either way.

The last time I had Paclitaxel and Carboplatin I had the hiccups and the neuron-firing twinges and the constipation, so those were sort of expected. But the sore face is a new one – I can’t wait to see what my team says about that – and I haven’t seen it in any list of side effects. It will be interesting to see if I have it after the next dose next week.

Today was even better; hardly any achies and just a few twinges. I had enough energy to shower and go to the grocery store, and wash all the bed linens, so it was a generally good day.

Chemo certainly keeps life interesting!

Update

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!!