Want some cheese with that w[h]ine?

*CAUTION*: Some less-than-nice language ahead…

Okay, I’m whining, because I’m tired of feeling like shit. I was up and down all night with cramps and gas and aches and pains. Even on my good days, of which I only had 2 this week, the achies are just under the surface, but I go do stuff anyway. Yesterday was supposed to be a good day, but wasn’t. I was draggy all day and couldn’t quite get my brain to cooperate with anything. Today, so far, I’m just achy, but my brain is totally AWOL. I have all my Medicare stuff that came in the mail, and I’ve tried reading the booklets, and nothing is registering – it might just as well have been written in some foreign language. I did see that my payment isn’t due until the end of next month, so at least I don’t have to worry about that. Or maybe it meant the end of this month, which is today. Crap, now I have to go back and find that page again. 

I’m holding on to the thought that Tuesday next week is the last in this cycle of treatments, and then I have two whole weeks to recuperate – yippee!! But at the same time, at the end of that two weeks, I’ll have another CT scan – and waiting to see what that shows is stressful, starting now, or actually starting the day my team told me to schedule it. I meet with my oncologist right after the scan so at least I don’t have to wait for days to get the results. I’m scared about what it might show, but feeling hopeful the tumors are still shrinking, if that makes any sense at all. This having cancer thing sucks. I’ve been going through chemo since the beginning of November; that’s three months now, and the side effects get progressively worse. I don’t care about the hair loss – it’s the other stuff that’s freakin’ awful.  I don’t know if my GI tract is ever going to be normal again, and that’s the worst of the side effects. Then there’s the twinges, that aren’t just twinges, but feel like something stabbing me; and they come and go all over my body from my scalp to my toes as if my nerve endings are having a party or something. Sometimes they’re so bad I have to stop whatever I’m doing and wait for them to pass; they only last a few seconds, but those few seconds sometimes feel like an eternity. 

If I were a drinking person, I would have finished off the Bailey’s sometime during the night, but I’m not supposed to drink alcohol while on chemo. I’m sure my liver says thank you, but between the liver tumors and the chemo and all the other drugs, I’m not sure what shape my liver is in right now anyway. So I’ll just content myself with remembering how good Bailey’s actually tastes. On second thought, that might not be such a good idea. Bailey’s is yucky – tastes nasty – bad for you – blech. Not working. ::sigh::

So I guess today, I’m just going to whine and do nothing and hope tomorrow is better. Maybe I’ll take a nap.

 

 

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Overwhelm

I recently realized that I am just now coming out of the overwhelming shock of my diagnosis. I talked in my last post about ‘dreamwalking’ and think that has been my state since October. I somehow managed to keep it together enough to work for a while, to submit the application for disability, to make and show up on time for tests and doctor appointments. I have blindly accepted whatever treatment was offered, not knowing there could be more. We did have a discussion with my oncologist early on; and he did outline what was available and what he thought I should do. I agreed because I wanted to get started and beat this thing.

This week was when things changed. I have tied in with some online lung cancer supports and have found out there are so many different treatment options out there. So today, I had a frank discussion with my team member and am satisfied I am getting the best treatment for me at this point in time. I am also encouraged that my oncologist is a leader in the field, and is proactive in changing protocols for his patients, including getting them in for treatment trials anywhere in the country. So now I feel I can breathe again. And I’m more optimistic. And I’m starting to get back to a more normal life. I know that at best I can expect to just manage this – I don’t expect a cure. But there can be remission when the tumors stay the size they are, and that’s what I’m aiming for at this point. If the tumors get small enough, there is a chance that radiation can finish the job. But for right now, I’ll take the chemo, bear the side effects (but there’s usually a drug for that!!), and continue the fight.

I still have to be careful of infection, so it’s important to keep an eye on my white count. I did once have to have a shot to stimulate production of white cells – and it worked. But I still can’t be around crowds, which makes shopping a bit of a problem! But with the antiseptic wipes I have I’m comfortable at least going grocery and pet food shopping. And if my white count gets too low, I’ll just have to wear a mask. I refuse to be sick any more. I’m not going to be an ‘invalid’ and I will beat this thing.

Onward and upward!!

Dreamwalking

This week has been a little strange. Not in what has happened but in how I am feeling. I feel as if I am just drifting through life; there’s a sense of unreality inside my head. I don’t know if this is a reaction to my cancer or a side effect from the chemo. It’s hard to explain. I seem to be on auto-pilot much of the time as if I have no control over changing course. Oh, I am having such a hard time describing this! Sometimes I find myself sitting at the computer just staring at the screen with no idea what I was aiming to do. Other times I will think about something I need to look up but as soon as I sit at the computer, my brain goes blank. I don’t like the feeling of not being in control of my brain and my mind. It seems easier to drift right now than to exert the energy to do something else. This waking dream world is what it is, and I don’t seem to realize that it is a dream world sometimes.

I am now three months out from my diagnosis, and I’m used to when and how the chemo side effects will hit me. But I’m tired of organizing my life around the side effects. As I wrote in a previous post, I can understand why people stop chemo. It’s a struggle to stay positive some days; other days I don’t have to think about being positive – I just am. I know this is an emotional roller coaster for me and for my partner. He is my rock through all of this. He makes sure I take my medicine when I’m supposed to. And he’s always checking that I’m okay if I get up in the middle of the night. He takes care of the dogs, the cooking, the cleaning, and everything else that goes along with keeping a household running.

I hold on to the thought that I can beat this; that the chemo is working; that the cancer is retreating. Even in my dreamwalking, I am aware of that nasty growth in my body that is trying to strangle the life out of me. And in those times, I try to visualize the tumors retreating and vaporizing into nothingness. It’s only fair; that’s what they are trying to do to me.

I take strength from not only my community of friends, but also the community of lung cancer survivors to which I now belong. Some are still fighting, some have lost the fight, and some have won the fight. But the fight is never really over; we will have to be vigilant for the rest of our lives lest the beast returns to make us fight again.

 

Phantom Hair and Other Musings

Is there such a thing as phantom hair? I know amputees can still feel pain, itching, etc in a limb that is no longer there, and I don’t want to make light of that. But since I shaved my hair, there are times when I see a hair out of the corner of my eye. Sometimes, when I’m putting in my contact lenses, I still use the back of my hand to push hair out of the way before raising my eyelid to put in the lens. If I wear a hat or scarf too long, it makes my scalp hurt the same way my scalp used to hurt if I arranged my hair against the grain. But if I don’t wear anything on my head, my head gets cold. I have longish peach fuzz all over my head, and most of it looks white or grey. It’s hard to tell because it’s so short and so sparse. I’ll have to wait until it’s longer. If it is mostly white or grey, it’s prime turf for some wild colors like purple, green, blue, neon pink – I get excited just thinking about the possibilities!

So things are generally going well. The latest tumor marker blood test shows the value still going down; not as fast as it went in the beginning but still trending downward. I’ve had people ask me what that is, so I’ll try to explain it. The blood test is for CEA – carcinoembryonic antigen. This is actually a protein found in the blood of people with cancer (carcino-) and also in developing embryos (embryonic). Production in a fetus stops before birth and healthy adults usually have a negligible amount of this protein in their blood. An increase in this marker means a tumor is present; if the values go down, tumors are shrinking; if the values go up, the tumors are growing, or there are new tumors, or the cancer has metastasized (spread) to other parts of the body. My value started at 74, went to 34, then to 28, and now to 24. As long as the values are going down, the news is encouraging. I will have another CT scan in about a month, and that will tell us the actual size of the tumor.

So far, I have had none of the really nasty side effects from this chemo. I was originally getting Cisplatin and Pemetrexed. That combination is the one that knocked me on my butt! So they changed it to Carboplatin and Paclitaxel, which I’m tolerating much better. Carbo- and Cisplatin are both platinum-based – maybe that’s why they’re so expensive?? Before the chemo is started, I get Premedications existing of Palonosetron to prevent nausea and vomiting; Dexamethasone, a steroid to prevent nausea, vomiting, and allergic reaction (the same drug I have to take the night before and the day of chemo); Famotidine to treat gastric reflux and heartburn; and Diphenhydramine, aka Benadryl, to prevent allergic reaction. Only after all these are injected IV do I get the chemo drugs, one at a time. You’d think with all that Benadryl I would want to sleep, but the Dexamethasone counteracts that and then some. I usually end up sleeping about an hour the night after I get chemo, and then I’m up most of the rest of the night. So I either read or do something productive like organize the bookmarks on my computer.

Maybe tonight I’ll take something as my team leader suggested today. I hate to add to the cocktail of drugs in my body, so maybe I’ll wait to see how it goes and take something if I really can’t sleep.

So onward and upward, dear friends. Thank you for your support these many months.

The light at the end of the tunnel

Today is an off week, meaning no chemo. The next 3-week round starts on Tuesday next week, and should be my last. The plan is for 3 more doses, then more blood work and another CT scan, and then to go on maintenance therapy. Supposedly, that will involve a once-every-three-week dose of Alimta but at a lower dose than is used for chemo. I’m feeling encouraged that this particular ordeal is almost over; chemo isn’t fun, and I’m getting tired of the side effects, and wondering every time I get an ache, pain or some other different feeling if it’s another side effect from the chemo or ‘normal’. I’m not even sure there is a normal right now. My brain doesn’t function like I think it should; my GI tract is messed up; and I have weird bumps appearing.

About those bumps. The first one showed up on my arm a day or two after I had the surgery to insert the power port. An ultrasound showed it wasn’t a blood clot, thankfully. Nobody has been able to explain what it is or where it came from. It doesn’t hurt; it isn’t sore; and hasn’t changed size or shape since it appeared. Then a second one appeared just above the notch where the collarbone is. So off I went today for another ultrasound; didn’t show anything definitive. I guess this one will be around for a while, too, since it’s basically soft tissue swelling. It’s more of an annoyance than anything else. But I think I need to keep vigilant to see if any more of these swellings pop up.

The good news is that my sons showed up on my doorstep late Friday afternoon. They had been planning this visit for a couple of months and had to coordinate arrivals and who was picking up whom from which airport (one lives in Seattle and one lives in Birmingham). And they didn’t mention a word to me. I hadn’t seen them in 7 or 8 years, so this was a wonderful surprise. And the timing was right – this being an ‘off’ week. They flew back today and I already miss them.

What price life

I can understand why some people decide to stop chemo and let cancer take its course. Chemo can be brutal, even the ones with lesser and fewer side effects. After a while, the routine gets in the way of life. Problems arise that throw off the chemo schedule – low blood counts, problems with veins, issues with power ports. All of this can make one irritated and tired of dealing with it. Then there’s all the financial issues associated with chemo and cancer – will I be able to work? If I can, will my boss make allowances for my frequent absences? If I can’t work, how will I pay my bills? Side effects get progressively more intense the longer one is on chemo; it’s cumulative.

I am not going to stop chemo. I’m just saying I understand why people do. My tumors are shrinking, so the chemo is working, and it’s worth it. But for some people, the chemo doesn’t work, or it stops working after awhile, and they eventually run out of options. Or the side effects are worse than the cancer. Or their insurance doesn’t cover the cost – or there is no insurance. There is palliative care, which merely controls the pain, nausea, and whatever other symptoms caused by the cancer. This isn’t hospice but just a way to make the patient comfortable.

I feel so fortunate and blessed that I have insurance, and it’s paying for all of my care, and the chemo is working, and there are ways to deal with my side effects.There is still that depression and hopelessness that kicks in every once in a while. It makes me human. I can’t help but wonder what the future will hold, especially after a day that’s more grueling than usual. How long can I keep this up? How long before the chemo stops working? Cancer tumors are like the Borg – they adapt. So I will just keep envisioning those photon torpedoes attaching the tumors; and the light shining into the dark centers and dissolving them. I will be like Thomas the Tank Engine and keep telling myself: “I think I can; I think I can…”

 

Predictions

I have had enough rounds of chemo now that I can predict when the worst of the side effects will hit and plan accordingly. The 3rd day after chemo seems to be the worst, or at least the 2nd evening going into the 3rd day. And by the 4th day, things are improving. The symptoms are mostly the jumpy nerve endings – I don’t know how else to describe it – some nausea, unsteadiness, and various aches and pains. I’ve noticed a new one emerging, though, that could be more problematic; the soles of my feet and the palms of my hands are starting to get tingling sensations. I was told to look for numbness and tingling in the tips of fingers and toes, but this is on soles and palms. Trust me to be different!!

Yesterday, Friday, was particularly bad with all the above symptoms. I was also sort of not in tune with what was going on around me. I’m not sure if that was part of the side effects or if I was just trying to keep focus elsewhere and away from the side effects. Either way, I just felt almost out of it.

Today was better; still with the jumpy neurons, but nowhere near as bad. Tylenol seems to take the edge off the pain of the twinges but doesn’t totally make them go away. And I’ve found that if I graze, the nausea isn’t as bad, so I’ve been trying to keep something in my stomach at all times. The only problem with that is no matter how I try to eat things that are low in calories, I’m still gaining weight. But I’m just happy I haven’t lost my appetite.

Tomorrow will be even better, and by Monday, I’ll be feeling okay except for the lack of energy. That seems to be almost constant. The day of treatment and the day after are the best days of the whole week.

So I know what to expect and when, and I can arrange my schedule of things according to how bad I know my symptoms will be.