Aches and Pains

I’m not sure how to describe the latest round of chemo side effects, but I’ll try. I feel as if my nerve endings are raw and are jumping all over my body. The excruciating twinges last a mere second, but they are very uncomfortable; no, dammit, they hurt! The whole time I’m awake, I never know where they will hit next. It could be my hips, my head, my abdomen, and they keep moving. If you’ve ever been pregnant and felt a baby kicking your belly from the inside, that’s what this feels like but magnified a thousand times. If you haven’t been pregnant, then imagine the worst case of food poisoning or GI upset you’ve had, and imagine that pain all over your body but constantly moving from one place to the next. Sometimes, it hits muscles so I have to stop whatever I’m doing because the muscles don’t work for that millisecond.

The nausea is back, too. It doesn’t seem to matter what I eat or drink. It’s slight, but ever-present, and fortunately controlled with drugs. I try to use other remedies, such as ginger, instead of the drugs, but sometimes the nausea is so bad I have to take the heavy-duty drug.

The good side is that I should only have two more rounds of chemo; on this round there’s one done and two to go. Then a week off, and another round of three weekly treatments. Then another CT scan and more blood work to check tumor markers. If all goes well, I’ll be on maintenance chemo after that. This will involve a lower does of one of the original drugs, and only once every three weeks. Target date for the end of the destructive chemo is Feb 4th, which is my birthday! What a great birthday present that will be!!

I’m still losing my hair – there are bald patches on my head now, small, but still bald patches. The worst part of losing hair is my hair is so fine it gets up my nose, and in my eyes, and drives me crazy! I have to shake out my pillow every time I get up to get rid of the hair. I asked Jenna to come over today after she’s done with work to shave my head – I’m tired of waiting for it all to fall out. The good part about losing my hair is I had two thick wiry eyebrow hairs, one black, one white, that I had to keep plucking; I haven’t seen either of them in a long time, so maybe they’re not coming back! I’ve heard that the color and texture of hair can be different when it starts growing back after chemo, so that should be interesting.

If nothing else, this journey is teaching me patience, fortitude, and to laugh and not take myself too seriously. 🙂

The Price of Being Sick

Oh, where to start on this one!! So I have pretty good insurance even though there’s a huge deductible. Today, I found out a few facts that blew me away.

I called the hospital billing office where the bulk of my deductible is being billed and said I wanted to set up a payment plan. I told the woman how much I could afford to pay monthly; her response was if I couldn’t pay what they wanted me to pay, they could still send me to collections, even if I was making payments. So how is that fair? If I don’t make their minimum monthly payment, my credit gets ruined? And to add insult to injury, another hospital in their system owes me a refund – since Dec 5th – of about $1,000. Now that’s not chump change; that’s a good bit of what I could use to pay the bill to the other hospital. When would I get my check? I asked. I’ll put in the request for processing today – it will take 4-6 weeks before it’s mailed. Excuse me, I say; you’ve owed me this money for almost a month; nobody made any attempt to process a refund; and you can’t apply it to the other bill because it’s a different hospital even though the billing is in the same office?? That’s correct, she says.

By the time I got done dealing with that and with my Disability Insurance company (oh, wait until I get started on that one!), I was exhausted. Tomorrow I intend to call the hospital that owes me a refund and find out why nothing was ever done about it before now!

Stay tuned!

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.

Cancer Made Me Paranoid

Yes, it did. Now, every new ache, pain, or twinge, has me scared that it’s more metastasis, or a weird side effect of chemo. No matter how much I tell myself it’s neither of those things, the thought still flits through my head. Headache? Must be brain metastasis. Backache? Must be metastasis to the bones. Stomachache? Well, you get the picture.

I think I have lost the ability to remember having those same aches/pains/twinges before I had chemo or cancer. It’s strange how our memory can play tricks on us. I wake up some mornings with my fingers asleep because of the position I was sleeping in, and then I get scared that it must be a side effect from the chemo. (One of the possible side effects is numbness of fingers or toes.) Of course, it’s gone within seconds of waking up and I know it has nothing to do with the chemo.

Sometimes, ignorance is bliss. If I didn’t know all the possible side effects, or how fast lung cancer can metastasize, would I be this paranoid? Probably not. But I do know. It’s important to know the side effects that could be a major problem; but then I worry that major side effects may mean changing the chemo regimen again, and I wonder how many times we can do that before running out of options.

So in the meantime, with every new ache and pain and twinge, I take a deep breath, tell myself that all is well, and go about my day.

Chemotherapy

Chemotherapy has some weird side effects. It’s not just the expected ones like GI upset and hair loss, but things like a change in the taste buds and vision changes. I’ve noticed that things don’t taste quite the same as they used to. I love ginger beer, the strong kind, but the last time I tried to drink some, it tasted awful! Other things don’t taste quite that bad but just different and a little off. Except chocolate. Chocolate still tastes fine – if it tasted bad, I don’t know what I would do!

And the vision changes are troublesome because my contact lenses don’t quite work any more. My glasses are okay, but they’re bifocal so sitting at the computer staring at the screen through the lower part gives me a crick in my neck. I bought my current glasses at Costco a few months ago, so yesterday, I took them in to see if they could loosen the side pieces as they were so tight they were cutting grooves into my head. The woman at the optometry counter not only loosened the side pieces, but also fixed them so that they sit higher on my nose if that’s where I place them, and then I can see the computer screen comfortably without having to put my head up and back hurting my neck and shoulders. So that problem is solved.

Now if my GI tract would just calm down a bit more, I would feel so much better!

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.

How To Become An Angel

This is a great way to help someone this Holiday season!

GYA today

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Enjoy flying!

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Cancer sucks Part 2

I have been feeling rage and despair for the last couple of days along with a sense of urgency to make this Xmas special because there’s a chance it could be my last one in this life. My emotions are still riding a roller coaster from the depths of blackness to feeling as if I will beat this. I can actually go for hours at a time without even thinking about cancer, and there are times when that’s all I think about. I don’t like tearing up for no reason or because of some sappy TV commercial. Then again, it could just be the time of year. But I still feel as if my diagnosis is totally unfair – I still have a lot of living to do.

Intellectually, I know that what I’m feeling is normal and it’s okay to feel it. I sometimes think I will be one of the small percentage that survive; and other times I’m sure I won’t be. The odds are against me, but then I have to remember all the times I have fallen into that small percentage of people to have some side effect, or something. For example; I tried the contact lenses that were supposed to reshape the cornea. I wore them every night, and within a week, I no longer had to wear contacts or glasses during the day. That was a liberating feeling! But within a few months, my eyes began to revert back to the way they were even though I continued to wear the special contacts overnight. My eye doctor said, no problem, we’ll just change the Rx and you’ll be fine. Only a very tiny percentage of patients have it happen again. Well, guess who was in that tiny percentage? And there have been other instances like that.

Here’s hoping that my being in that small percentage will work for me this time instead of against me.

Cancer sucks

I know, that’s kinda stating the obvious. But cancer really does suck. It sucks the life out of people who have it and out of their families and friends. Those who survive the sometimes brutal treatments will never be the same; those who don’t survive have families and friends that will have a hole in their lives as long as they live.

A beautiful soul died yesterday after a long fight with cancer. There comes a time when fighting becomes too much. I never met Jane in person but knew her through an online community. She had wit, humor, and compassion and left behind a devastated husband and soulmate. Her friends speak lovingly of her, and I know she has left a hole in their hearts.

R.I.P. Lady Jane

Medicare shopping

Today I decided to get serious about finding a Medicare plan as I’ll need to sign up for it in January. I already have my card for Parts A & B, but if I’m going to continue on chemo, even just maintenance, the deductibles are going to mount up pretty quick. It’s hard to know exactly what I will need, but the business office at my oncologist’s office said I need Plan F, as that will cover most everything. I will also need Part D for prescriptions, even though I’m not taking much right now.

Oh how tangled that mess is! I found out that Plan F is the same no matter which company I choose, but the premiums vary wildly. So how can that be if the coverage is the same? I just don’t get it. But the good news is, I narrowed it down to two companies for Plan F and one for Plan D. But I do need to check with the ladies in the business office to make sure that the Plan F is one they are comfortable with – one that pays its bills on time, etc. But Plan F sounds like a pretty good deal – no deductibles and no out-of-pocket expenses. There is a high deductible option that costs less each month, but that one ends up costing more in the long run.

After spending all day on the Medicare site and various insurance company sites, I’m pooped. I don’t understand why some companies don’t have their rates on their web site and others do. If i have to call to talk to a sales person for Company A, and I can get all the information from the web site for Company B, guess which one I’m going to prefer? No rates on the web site = no consideration at this stage.

I’m glad I don’t have to sign up just yet – I’m still in the gathering information stage.