The Waiting Game

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.

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More side effects

Sadly, I have reached the conclusion that my favorite spicy foods will be off the menu for the duration of chemo. We had spicy Louisiana gumbo for dinner a few nights ago, and the whole next day I felt as if my entire abdomen was on fire, and I felt bloated, gassy, and generally uncomfortable. The same thing happened a night or so later when dinner was tacos. But the final straw was the cioppino, which also left me very uncomfortable. So it looks like I am being reduced to eating a bland diet for the duration. Or I could occasionally just say the hell with it and pay the consequences the next day. (Knowing me, there will be a lot of consequences being paid.)

My taste buds don’t seem to be affected very much. The only thing that hasn’t tasted like it usually does is ginger beer. I haven’t noticed any other strange transformations in taste.

I do, however, have a very sore scalp. I’ve had a day or two since chemo started where hair fell out, but it has only happened a time or two. Then a couple of days ago, my scalp became very tender, sore, and itchy. And the hair started coming out in clumps. I wake up in the middle of the night with hair wrapped in my eyelashes and tickling my nose from all the hairs on my pillow. I didn’t think losing my hair would bother me very much, but it does now that it’s coming out in handfuls. I am tempted to shave my head at this point, because even though my hair is very short, it is very fine and when it falls out onto my face it tends to get up my nose and is just generally very annoying. Maybe shaving my head isn’t such a good idea if my scalp is so tender. Guess I’ll just have to be patient.

Frustration

I’m tired of being tired and not feeling well. Yesterday was particularly bad. I couldn’t seem to stay awake very long, and I felt like crap. I woke in the middle of the night with cramps and nausea. Taking one of my anti-nausea pills helped with the nausea but not with the cramps. I felt as if I had eaten ground glass and it was eating me from the inside out.

Chemotherapy attacks rapidly multiplying cells, which include not only the cancer cells, but hair, nails, and mucus membrane, which is what lines the gastro-intestinal tract. That’s why nausea, diarrhea, vomiting, and hair loss are often side effects of chemotherapy. My hair and nails are fine at the moment, but my GI tract isn’t. I have three different anti-nausea pills; one for mild, one for moderate, and one for severe.

The side effects are cumulative, and this is the third week of three for this drug combination. I’ve noticed that Wednesday into Thursday are when the side effects are at their worst. And yesterday was the worst it has been so far; not counting the first round of the combination that knocked me on my butt. I won’t be getting chemo next week but will start another 3-week course on Monday the 23rd after more blood work and another CT scan.

Today, more hair came out. It seems to be a day of hair coming out and then nothing for a week or so. I’m thinking my good shampoo and conditioner might have something to do with my hair still being there. Who knows? But at least today my GI tract has calmed down a bit, and I stayed awake all day.

Next week should be better.

Hair

I woke up early this morning with wicked acid reflux that caused me to be up for a couple of hours. I took some medicine and it finally eased so I could go back to bed. I think I probably forgot to take my medicine after dinner – I’m blaming that on ‘chemo brain’. I have been having trouble finding the right words for things lately. Sometimes I have to describe something in a roundabout way because I can’t remember the name for it. There is a long technical name for this cognitive impairment, but I’ll just call it chemo brain. I’m not having trouble concentrating yet, but the lack of having the right word for things is bothersome, especially since language is so important to me. But this will eventually pass.

The other thing that’s happening is hair loss – and not just the hair on my head. My pubic hair is falling out too, and that is weird. I know they told me it wouldn’t only be the hair on my head, and I knew it would include eyebrows and eyelashes, which are pretty much thin and almost non-existent anyway, but I didn’t think about the other hairs.

It will be interesting to see what color the hair on my head will be when it grows back in. I can’t remember the last time my hair wasn’t dyed blonde, or red, or brown, or some combination thereof. I know there’s probably a lot of grey now, because I see it in my roots when it’s time for color. And I’ve been told the texture sometimes changes when it grows back; maybe I’ll get the thick, luxurious hair I’ve always envied in other women; and maybe I won’t. I will just have to be patient.

Fatigue

Chemo went well today, although there was a moment of panic when no blood was being pulled out of the port; that’s never a good thing. But fortunately it worked on the 2nd try. The site is still tender and poking it more than once with a needle isn’t fun! So the infusions went well and only took about 4 hours.

The main side effect I seem to be having is bone-crushing fatigue. Consequently, my treatment team strongly suggested that I not go to work for the rest of this year and they will re-evaluate in early January. I was only putting in a couple of hours a day at most, because that’s all I could handle. But they are concerned that those hours will deplete my strength even more, and I need my strength to fight off this dreadful disease. (I would much rather be at work than having to fight cancer! But I don’t have a choice.) So I’m hoping my disability policy I’ve been paying on for a year and a half will pay out like they’re supposed to. And of course now I wish I had paid a little more and bought the cancer policy – but hindsight is always 20-20 isn’t it?

So I’m spending my days reading, writing, napping, and playing on the computer. And when I feel up to it, venturing outside the house to the store or to take pictures. Being out in nature is rejuvenating, so I try to at least sit on the back patio for a little while each day for fresh air and sunshine.

My hair is continuing to thin but isn’t falling out in chunks yet – I’ve been told it will. Oh, joy! But I’m prepared, at least physically with hats and scarves and a possible wig. Mentally, I’m not sure one can be prepared for that sort of thing. I admire those women who can go out with bald heads uncovered, and who knows, maybe I will reach that point, too. Because we all know that ‘bald is beautiful’, right?

Conflicted

We spent 2 hours with the oncologist yesterday – so exhausting! What we found out is that I have Stage 4 adenocarcinoma – just the name for the type of cancer. Untreated, life expectancy is 4-6 months at stage 4; with chemo, life expectancy is about a year. However, there are newer treatments coming out soon that can help chemo with reducing the tumors and improve quality of life.

The type of chemo I’ll be getting has a long list of side effects, as most chemo drugs do. One of them is hair loss. The upside to that is it isn’t just hair on the head but all over the body, so it looks like I won’t have to shave my legs for a while! And, a friend of mine is visiting family in Louisiana, so I’ve asked her to look for something fun for me to wear in either LSU or New Orleans Saints colors. Geaux Tigers and Who Dat!!

The rest of the side effects can mostly be controlled with more drugs. I need to get everything organized so I’m ready for Monday when I get my first chemo treatment. I’ve already asked, so I know they won’t let my bring Spud (my mini poodle) with me. I’ll have my Kindle and my phone all charged up and ready to go.

Neither one of us slept well last night. To hear the prognosis was kind of a shock, to put it mildly. So this week, we’re going to be tying up some loose ends so that Steve and the fur babies won’t be left out in the cold when I die. But I’m not planning on living for only a year. The promising therapies nearing approval will greatly extend life, and there are others in the chute.