STRESSED? NOPE. I’M FINE.

(Someone no longer around, who I miss very much, defined “fine” this way: “Fucked up, Insecure, Neurotic, and Emotional.” She was ALWAYS fine.)

It’s been a busy week here at Casa NVaine. Blood work for mom on Tuesday–three needle sticks to find enough blood for all those tests. Chemotherapy on Wednesday. While she was at chemo, I stopped at hospice to talk to the folks there about a living will for mom. They gave me the paperwork, and promised to send an admissions nurse out to walk us through filling it out.

Wednesday night, mom and I were talking to dad. “Please talk to the folks at hospice,” he asked her. “They can help with a lot of the problems you’re having. Please give them a call.”

“I will,” mom sighed, in her best I’m-agreeing-with-you-so-you’ll-shut-up voice.

“Promise?” he asked.

“YES dear.”

“Oh good,” I interrupted. “The nurse will be here tomorrow at noon to help us with this living will. You can talk to her then.”

Mom frowned. That was not part of her plan.

The nurse arrived early; I was in a badly needed shower. I pulled clothes onto my wet body, and took my hair out of the towel as I let her in the door. Mom was still in bed.

We got ourselves together in the kitchen and the nurse walked us through the living will. When we were done, mom hesitantly asked a few questions. She grew up knowing that hospice is a big industrial building where dying people are stored until they die. “Death warehouses,” my father called them. I can’t speak for every hospice, but this one is nothing like that.

The nurse told her about the medical services that hospice provides. She described the additional therapies available. When she got to “music therapy” mom’s face lit up, and the nurse described the two music therapists and what they do. She then suggested a trial period, and promised mom that we can “fire” them any time we want.

Mom signed up.

Friday afternoon was filled with activity. The home health aide showed up to give mom shower. This was desperately needed. The social worker arrived to describe the services available in more detail, and to take my list of items I need, like prescription refills and latex gloves and bed pads. While the social worker talked to us, the home health aide cleaned mom’s bathroom and her commode. (Though I don’t mind doing these things daily, I really did enjoy getting a day off from it. It meant I finally got to clean MY disgusting bathroom.)

And the nurse arrived to do an initial evaluation. All told, mom stayed awake for the entire afternoon. Because of the steroids administered with chemo, she was awake and alert and really up for all the activity.

Last night the effects of the steroids finally wore off. She’s been miserable, confused, groggy, and in pain. I didn’t sleep much last night, so I tried three times to catch a short nap today, and mom woke up howling every time I tried. I can’t give her a pain pill because she won’t eat, and the pills give her nausea and cause vomiting when she takes them on an empty stomach. She won’t listen to anything I tell her, and I’m so tired I can’t think clearly about what to try next.

In the middle of all this a hospice nurse called and asked how she was doing. “And why didn’t you call us?” she asked.

“That’s a very good question,” I admitted.

She gave several very sensible suggestions, things I should have thought of if I could think, and she made me promise to call back if none of them work.

 

I’m not going to think about this tonight.

“Drink!” I’ve nagged for months. “You’ve got to flush the chemo drugs from your kidneys. If you don’t drink enough they’ll accumulate there and you’ll damage your kidneys. I’d hate to see you on dialysis.”

“I am!” mom howled, a full glass of water at her elbow. “I can’t drink any more!”

Today mom had no need to urinate.

 

It’s two in the morning…

…and I’m planning for a week of PET and CT scans and chemotherapy. The details I absolutely have to get right are amazing, and right now I’m at the point where I try to remember to check my toothbrush before I leave the house to see if it’s wet.

Tonight I reminded my mother that she’s got scans on Monday. She made a face as though she’d just eaten some of my cooking.

“It’s very hard to feel sympathy for you,” I told her, “when I’d kill to get just one scan, just one doctor who would be interested in looking at it. I know they suck, but at least you’re getting them.”

She looked surprised. I guess she doesn’t know that something worse than having to sit still through all those scans is not having the option of having scans at all.

 

I wish I knew what to think.

I’m on the phone with mom. The moaning and groaning and yelping and crying is unbelievable. It doesn’t happen when we’re discussing something, only when there’s a break in the conversation. Is she in pain? She says no, but this sounds as bad as some of the things I’ve heard out of the burn unit. I have no idea if I should ignore it or call an ambulance.

I guess I’ll understand better when she gets here. If she gets here. She’s not sure she’ll be able to make it.

If I don’t get some sleep soon, I’m not sure I’ll be able to handle it if she does make it here.

She went to the doctor today, and had to have IV fluids for two hours before they could draw blood.  Then she got a Procrit shot.  I can’t seem to get through to her that if she’d drink liquids she wouldn’t have to be stuck at the doctor’s for two hours getting fluids, and she’d probably feel better.

I knew this was going to suck, and I figured she’d have trouble eating, but nobody told me I’d have to constantly nag my mother to drink water.

 

Slow down, start from the beginning.

I was headed for the registers at Target when my phone rang. I almost dropped the phone when I saw it was my father calling me. Other than pre-arranged calls from the doctor’s office, I don’t think he’s ever called me.

I answered and heard my mother’s voice. Mom calling me from dad’s phone… if anything, that’s worse. “Hi honey, how are you?” she casually asked.

I skipped the polite stuff. “What’s wrong?”

She hemmed and hawed for the longest few seconds of my life, and finally howled “My purse was stolen!”

She continued without pausing to breathe. “I’ve had to cancel the credit cards, we just came from the bank, we had to close all the accounts…”

I interrupted “Were you hurt?”

It took about 20 minutes of questioning, but no, she wasn’t hurt, and we can’t actually say for sure that the purse was stolen. She doesn’t know where it is. She thinks she forgot it on the front step last night, and she’s furious at herself for being so stupid.

My argument is that 1) dad saw her take it into the house and 2) no charges have been made on the credit cards. I think she has it in the house somewhere, but it’s fallen behind a piece of furniture or she put a jacket or something on top of it.

This has been well over two hours of discussion between me and my mother, and hours of frustration changing locks and closing accounts for my father.

A few months ago mom lost $600 that she says she won at the casino. I spent hours telling her that she’d misplaced it and it would turn up. She spent hours yelling that she was stupid and she’d left it easily accessible in her purse and someone had stolen it and she lost my birthday present. I told her I’d much rather have her happy for my birthday, but that was ignored, too.

A week later the money appeared. She promised she’d never doubt me again.

Now I’ve reminded her of that, and she yelled at me to stop bringing that up, I was right that time but I’m wrong now. And she’s stupid and everything is her fault and she deserves all of this.

If I ever meet the nurse who told mom that chemotherapy will make her emotions too powerful to control, I swear my emotions will be too powerful to control.

 

I just don’t know.

Mom has always been manipulative.

Granted, when I was a kid, asking me to do something probably wasn’t very productive. But manipulating me into doing things not only didn’t work, but it made me very resentful. I don’t know what the solution should have been, but dishonesty and playing my feelings shouldn’t have been it.

I got over it. I eventually figured out that manipulation isn’t a good way to treat someone, and after that I learned to watch out for it in other people.

(Digression: I’ve used honesty, and it hasn’t gotten me any better results. So hell if I know what the solution is.)

But mom, never one to give up on an idea simply because it doesn’t work (like me,) has continued to use manipulation to try to get me to do what she wants. It never ended, even though it never got her what she wanted and it almost always backfired.

So now I have no idea what’s going on. From what I’m hearing on the phone, mom is in horrific pain. This would seem to be the same pain that she had immediately after surgery, the pain that made her delirious. Yet that pain faded and she was fine for a couple of weeks. Now it’s back?

Or is she manipulating me? If so, why? What does she want me to do? Why doesn’t she just ask me? (This method works much better now that I’m an adult.)

If she’s making the pain sound far worse than it is to make me go there and I jump on a plane, not only have I reinforced treatment I don’t want to receive, but I’ll get myself into some serious trouble here at home and I’ll rack up even more credit card debt I can’t pay.

If this is for real and there’s a medical situation that I can help resolve, and I stay here, I am two steps below pond scum. In any case, she doesn’t do what I tell her to do whether I tell her in person or over the phone.

If I ask, I get denials.

I just don’t know what to do.

The current round of chemo should be over soon. Maybe things will improve after that.

 

An ordinary round of chemotherapy. Now there’s a phrase I never thought I’d use.

I was a bit concerned when mom started chemo again last week. She was almost instantly sick.

It might have been the chemo, it might have been something else, it might have been her fear of the chemo. (These are new drugs for her, and she didn’t know what to expect.) Whatever it was, it seems to have passed, and now she’s just dealing with ordinary chemo exhaustion and lack of appetite.

Slowly but steadily, the personality, wit, and intelligence I know as my mother is fading away. Sometimes the old mom peeks out, but those times are getting more and more infrequent.

Why didn’t anybody warn me about that?

 

Did I actually get through?

Yesterday mom was talking proudly about how she’s kept her weight down. I’ve agreed with everything lately, but I just can’t agree with this. I explained again that it’s not a bad thing if she picks up a few extra pounds, because when chemo starts again if she has trouble eating her body has a little extra she can fall back on.

I’ve said this more times than I can count, but I think mom is finally starting to fully understand just what chemo does to her appetite.

Today she started the next round of oral chemotherapy. For dinner, a 95th birthday celebration for my grandfather, she managed a few bites of lentil soup. I should have told her what an excellent choice the lentil soup was, but unfortunately didn’t.

She observed that with these chemo drugs, she felt terrible very quickly.

I reminded her that this is what I was talking about yesterday, how eating when she’s able and picking up a few extra pounds will help her during times like this, when she can’t eat at all.

Instead of screaming at me, she paused for a moment and said “Yes, I see that now.”

(Insert fireworks, marching band, and acrobats here.)

We went over the need for water, Gatorade, and Boost (not all at the same time!) again, and then she had to lie down. As she was hanging up she mentioned that she needs to get more Boost, because she only has two bottles left.

And now I’m mad at myself for not reminding her of the things she needed to do before starting chemo again. I know this stuff. Why can’t I think of it?

 

Chemotherapy derailed.

“I didn’t know it had to be refrigerated!” mom howled.

“It’s no big deal, we’ll just find out if it has to be replaced,” I told her.

“It’s going to cost $1300 to replace it! I’m not paying for that! They should have told me it needed to be refrigerated!”

“Why would they know it needed to be refrigerated?” I asked.

“They had to go to the refrigerator to get it! They should have told me then!” she yelled.

Pause.

“Mom, you watched them go to the refrigerator to get the prescription and you didn’t know it had to be refrigerated?”

Longer pause.

“They should have TOLD me! I FORGOT! It doesn’t say ANYWHERE on the package!”

We’ve been through this before.

“Call the pharmacist,” I told her. “Be sure it’s the pharmacist you’re talking to. Ask if it’s still OK to take.”

“I DID!” she yelled. “He doesn’t know!”

“Call the doctor.”

“He told me to call the pharmacist!”

We played 200 questions. The pharmacist called the manufacturer, Mylan, and has left several messages. It’s been two days and no one has called back. The drug is Etoposide. She left it out overnight and put it in the fridge in the morning.

“I’ll call,” I told her.

Mom wailed that they won’t call me back either and she’s not paying $1300 to have this drug replaced.

If you’re new to this blog you should know that while my mother was always a bit on the emotional side, this hysteria is new, a side effect of the chemotherapy. And the mistakes and confusion are symptoms of “chemo brain.”

I called, listened to the entire phone menu instead of picking the first obvious choice, and pressed 6 for “other questions.” Sure enough, an actual human being answered the phone. I explained the situation.

“Etoposide has been tested and the potency is unaffected by up to three months of storage at room temperature,” she told me without pausing to look it up. This would seem to be a common question.

Well, that was tough. I’m not sure what mom’s pharmacist is doing, but it took me less than three minutes to get a clear, direct answer. And I have no idea why that can’t be printed on the patient information sheet for the drug–or maybe it is, and mom missed it.

And mom has spent the past several days in a low grade panic, repeatedly replaying a vision of having to shell out $1300 for replacement drugs.

On that happy note, mom is starting the next round of oral chemotherapy, several days late.

 

Again.

Mom’s not eating again. “But I had a big lunch!”

Why didn’t I have kids? Why do I NEED kids? I have a mother on chemotherapy.

 

What is she thinking?

I had many years under my belt before I realized that the pharmacist is a good person to talk to when you’re starting a new prescription. (Never mind how many years. Too many.)

My mother has more than two decades on me, and she hasn’t figured that out yet. She also doesn’t want to hear it from me.

She picked up her chemotherapy pills on Friday. This afternoon my father noticed that the packaging includes instructions to refrigerate the pills. “I didn’t know that!” she yelled at me. “Who the hell reads that stuff? It isn’t even on the insert…” and to prove it she read the entire insert to me, including the pharmacology and all the other information intended for the doctor. She finally got to the patient information, where she read “store under refrigeration.”

“I didn’t know!” she wailed.

“Is it in the fridge now?” I asked.

Silence.

Again. “Is it in the fridge now?”

“No!” she yelled.

“Why not?” I asked.

There was much shuffling, moaning, groaning, creaking and thumping, a thud, then she said “It is now.”

“It’s probably no big deal,” I told her, “but you should talk to the pharmacist tomorrow before you take it.”

“I know,” she told me, using a very annoyed tone of voice.

“You should talk to the pharmacist whenever you get a new prescription,” I said.

“The doctor didn’t tell me anything about it!” she yelled.

“That’s why you should talk to the pharmacist,” I repeated. After much discussion, I finally figured out that she thought I was talking about the person at the cash register, and what do they know?

“That would be a pharmacy tech,” I told her, amazed that she’s gotten through several months of chemotherapy and an impressive collection of prescriptions without becoming familiar with the pharmacy technicians and pharmacist. I tried to explain the difference, and succeeded in annoying her even more.

She announced that if she needs a replacement that SOMEBODY is going to have to order it for her, and I gave up. She has no idea what I was trying to say but she’s damn well going to get her money’s worth, and I can hope that the end result will be the same.

She went on to complain about the ugly brown spots that are appearing on her head. “No one can see them under the wig,” I tried to reassure her.

“But they’re huge,” she said. “One of them has got to be over three inches long.”

That sounds to me like something the doctor should know about. It might be nothing, but he’s the expert, not me. I closed my eyes and asked “What does the doctor say about them?”

“I don’t know!” she yelled again. “I just noticed them now!”

So either three inch long brown spots weren’t there this morning and magically appeared in minutes this evening, or they’ve been increasing in size slowly over a few days and she didn’t notice. She’s upset because they’re ugly. I’m concerned because I don’t know what they are.

I’ve seen people who are innocent bystanders in their own medical care. They don’t volunteer information, they don’t ask questions, and they don’t take an active interest in what’s happening to them. I never understood, but now that I’m seeing it in my mother, I’m starting to wonder if it’s a coping mechanism. It’s much easier to take that chemotherapy pill, I guess, if you don’t know what it’s doing to you.

That would explain a lot of strange behavior.

 

Define good news again, please?

Good news! Mom gets to go through more chemotherapy.

That wasn’t the news, of course. The good news is that the tumors are considerably smaller and are expected to continue to shrink.

There is, however, some additional “activity”. One of the disadvantages of being present by cell phone is that I run the risk of missing most of the discussion, and that was the case here. I’m not sure what “activity” means. Maybe there are cancer cells holding a square dance somewhere. Maybe they’re thrashing around a bit before they go down for the third time.

Mom’s doctor says that conventional treatment would wait three months and then have another MRI. There’s also the possibility, he said with hesitation, that additional oral chemotherapy would be of value.

It’s not commonly done, and probably not necessary, he said. He doesn’t know that the benefits outweigh the additional toxicity. She doesn’t have to go that route if she doesn’t want to. We could just wait and see what the MRI says. There have been no studies to support this treatment, though there is some anecdotal evidence. It really isn’t needed. There’s nothing she should worry about.

But he’d like to get her started just as soon as she gets back from visiting me.

She looked at her calendar and told him she’d be returning on the Saturday before New Year’s. How about just after the holiday?

How about the Monday after she gets back? he asked.

So two more rounds of chemotherapy aren’t really needed, but she should start immediately after her return.

I have got to call this doctor tomorrow and see if he’ll tell me anything he wouldn’t tell her.

 

If this is the eye of the storm, it’s a big one.

This is day two of no telephone hysterics.

It’s not enough to make me relax. I found myself biting my tongue while talking to mom on the phone. I’m afraid to say much of anything because if I say the wrong thing, it unleashes a hurricane of emotions. There were a couple of times when I could hear mom’s voice rising. It came close, but the storm never hit.

It’s so difficult and painful to talk to her, yet I know that the time is coming when I won’t be able to talk to her at all. Many months ago her doctor explained to me that it’s not a matter of “if” this type of cancer will return, but “when” it will return. The first time we can bring it under control, he explained. The second time we can’t.

So I call, aware that I have to be careful to not provoke the emotions that chemotherapy has supercharged.

Someday, she’ll call me to tell me the cancer has returned. But not today.

 

If I say tonight was good, will it change?

It was pretty close to a normal phone call tonight.

I admit I was pretty distant. I’m afraid to say anything. But mom managed to talk for quite a long time without crying.

I don’t know if this is an improvement as she recovers from the chemo, or if she was just determined that she wasn’t going to cry on the phone tonight. Either way, it was a welcome break.

Which doesn’t explain why I’m up at four in the morning. Oh well.

 

Oh no, not again.

She did it again.

As I described tonight’s topic list to a very patient friend, I was amazed at the number of things which drove my mother to hysteria tonight. The phone call was the world’s worst roller coaster. As she spoke with frustration about the demands she’s making on my father that he isn’t meeting, she started to cry for the umpteenth time. (I really did lose count.) “If (name) was still alive I’d marry him instead!”

It took me a while to figure out. She was speaking of an old high-school boyfriend who married someone else, had a family, and died some time ago. What brought that up is a total mystery to me.

Not that the accusations were restricted to my father. A liberal helping of guilt was heaped on me. And when I told her that when she says those things about me I feel awful, she yelled “You’re WRONG! You’re WRONG to feel that way! How could you even say that? You’re making me feel TERRIBLE!”

Oh, those factually incorrect feelings I have.

I tried to gently explain that it is very difficult to talk with her when she’s like this. She again (or still) flew off the handle and yelled that it is NOT, she has NO problem talking to ANYbody. She who is the loudest wins, I guess. She went on to cry about several other topics, including my father (again,) the house she’s trying to sell, the fact that she and my father have spent years caring for their parents, the vacuum cleaner, Thanksgiving, her former students, and the fact that since the chemotherapy she cannot control her emotions at all.

She also contradicts herself frequently.

In the midst of the ranting was a story about meeting a former co-worker who didn’t know about mom’s cancer. She told me this person said “You look great! Retirement must be agreeing with you! Your hair looks wonderful!” And she admitted that it was a good thing I took her to get her wig.

(Getting the wig was very difficult. She fought me the whole way.)

“I guess every once in a while I’m good for something, then,” I said.

A few moments later she changed her tone of voice again. “So are you still looking forward to having me visit?”

 

More is not always better.

Mom’s nurse practitioner told her that the chemotherapy would make her weepy. What she should have said was that it would make mom much more of whatever she is.

My mother is naturally weepy. She cries at movies and musicals, she sniffles at TV commercials, she completely breaks down at the sight of other people’s grandchildren. She always did that.

It’s now ten times worse.

She had other traits that I accepted a long time ago that now have blown up beyond my ability to comprehend or believe. It doesn’t matter what they are. They are now so out of proportion that I wonder who I’m talking to these days.

Imagine that. We’ve gone through radiation and chemo, unbearably painful testing and deep haunting fear of the unknown. And now that radiation and chemo are over I’m left with someone I don’t recognize.

And these are the GOOD days.

Have I mentioned that if I’d found a way to help her quit smoking when I was a kid we wouldn’t be living through this right now?

And have I mentioned that it’s three o’clock in the morning again?

 

Where did the lunch hour go?

I spent nearly an hour writing this reply to a comment I got yesterday. I did this because I understand the author took the time to craft a comment with the intention of being kind, and I felt it deserved a response. First the comment, then my answer.

Gia Says:

It must be frustrating and having you pull your hair out dealing with your mom. But its not fair to judge her by her flaws. I constantly say the serenity prayer to myself when i get into a frustrating situation.

Lord grant me the serenity to accept the things I cannot change

The courage to change the things that I can

and the wisdom to know the difference.

You cant change her (which im sure you know, lol) so try to put your energies into things you can control and more than anything continue to pray for wisdom that God will help you understand the difference between the two.

None of us are promised tomorrow and though it does get tiring always being the one to have to take the high road – you’ll be much more at peace when her final hour comes.

Ive been through it and know what the regrets can be.

I’ll pray that you are able to maintain your patience and kindness. Ill pray for your mom to practice humility, acceptance and also kindess.

I wish you both nothing but the best!

Peace, Love and Tight Hugs!

Gia,

I understand that your comment was intended to be comforting. For that I am grateful.

However, two things in your post have stuck in my mind. One is that you seem to think I am judging my mother by her flaws.

The purpose of this blog is to show what it is like to be the family member of a smoker who has stage four small cell lung cancer. It is my hope that somewhere, one or two smokers will read this blog and understand that what I’m feeling may be felt by their own loved ones someday.

I always knew that cancer is incredibly difficult, both for the patient and for the family. I had no idea HOW difficult until the day in May when I almost drove off the road because my mother called my cell phone to tell me she had cancer.

Mom’s oncologist told me that small cell lung cancer has five possible causes: smoking, smoking, smoking, smoking, and second hand smoke. My mother had the option to quit, and actively chose not to. She deeply regrets that now. And she daily lives with the guilt of knowing that long after she’s gone, I may develop this cancer, thanks to 20 years of second hand smoke as I was growing up.

And I daily live with the guilt that I couldn’t find a way to help her quit. It’s not logical. But it’s true.

All of these things, along with all of her “flaws,” are not pretty. They are a fact of life after a small cell lung cancer diagnosis. If I hope to show even one smoker what possible future they’re creating for themselves and their family, I have to display it all here.

What you’re seeing here is not judgment, but it is as close to “reporting” as I am capable of, given my emotional attachment to my mother. I write about her confusion and anger not because I think they’re wrong, but because I want folks to know that these are just two of many side effects that are endured in chemotherapy. I write about my frustration and fear not because I blame my mother, but because I want smokers to know that someday their loved ones may be feeling these same things. If you see somewhere in that post where I’m judging my mother, please let me know about it, because I want to eliminate that part immediately. My mother judges herself quite harshly every single day. She doesn’t need any help from me.

You also wrote about your prayers for me and my mother, and suggested that I do the same.

I thank you for your kindness in taking your time to do this for us. I know it is with the best of intentions, and it seems to be the only way that a stranger many miles away can actively try to help.

Perhaps my mother will find comfort in it, and I will let her know that you have done this for us. For me, it provides no comfort.

The Serenity Prayer is helpful to many people, but not to me. I don’t rely on a higher power to show me what I cannot change–long years of experience trying to change things and failing have clearly shown me my limitations, and there are many.

But I’m still searching for a way to make things better, if not for us, then for someone else. That’s why I write this blog. And the idea to do that did not come from divine inspiration, but from an earthbound friend. This friend has been a source of more help, comfort, wisdom, and inspiration than all the prayers I ever said when I was younger.

I can’t “make” my mother well, and I can’t “make” anyone else quit smoking. I can make my experience available, and I can hope that someone reads it and finds it useful. My own serenity prayer is the hope that I’ve contributed to making a positive difference for someone, somewhere.

I thank you for your prayers. However, it would be more comforting to me if you know someone who is thinking about quitting smoking, and told them about this blog, or told them about the entirely avoidable hell my family lives in. That could be the answer to my serenity prayer.

 

Today, it’s nostalgia.

It seems like mom’s emotions have been running wild lately.  Today was no exception.  She cried over books she used to read to me when I was a child.  She got angry at herself and just angry in general at the way things happened more than 20 years ago.  It was an hour long roller coaster ride.

She also worried about the blood test that’s coming up and whether she’ll need another transfusion.  I’m more worried about the scans that are coming at the end of the month, but if she want to focus on a transfusion, that’s fine by me.

At least she had the good sense to postpone a trip to the casino when she realized that she’d planned it for Veterans’ Day.  Casinos are usually packed on holidays, and she’s still recovering from chemo.

She’s talking about planning a trip to come here, but it’s clear she hasn’t worked out the details yet.  The more we talked, the more surprised she became as she realized the things she’s got to figure out.

I wish my entire family would pack up and move here.  It’s not as complicated as it sounds.  There are three of them left.  My grandfather would love it here.

But my mother is determined that it won’t happen, so it won’t happen.

 

Mom has a lot of anger today.

She’s angry over the election, she’s angry that my father is keeping to himself (remember, he just lost his mother a couple of weeks ago after some very difficult medical problems,) she’s angry that she’s tired all the time and naps frequently.

I get the feeling she’s angry at me, too, but she’s not saying why.

I don’t know what to say.  I’ve tried explaining why she’s so tired, but she doesn’t want to hear it.  Apparently she should be able to go through chemotherapy with no side effects.

Some of the things she’s saying are so far off the wall that it’s scary.  I tried pointing some of them out, but she got angrier.  I wonder if this is a temporary thing.

 

Is my throat just a little scratchy?

I’ve been exhausted this whole trip.  Between the funeral and mom’s chemotherapy, and the excess of emotions around here, and the stress of… well, everything, I figured it was normal to be exhausted.  Especially since I’m usually wiped out all the time.

Now my father is sick, and I’m wondering if I’m coming down with something, too.   Just what I need.

Mom and I are going out for dinner shortly.  I can’t make her sick.  She just finished chemo.

I love my family very much.  I miss my friends terribly.  But I want to go home so badly.  I’m not sure how much more I can do.  I feel like I’m useless here, because I’m so wiped out and overwhelmed.

All this would be so difficult without mom’s cancer, if she had never picked up a cigarette.  There are no words for how difficult it is now.

 

Done.

Mom is done with chemotherapy.

The nurses gave her a “Certificate of Acheivement,” which is kind of scary.  Mom noted the misspelling with humor, and everyone was horribly embarrassed.

After that we went out for a huge sushi and hibachi lunch to celebrate.  I ended up eating too much because there can be no sushi leftovers, and mom still doesn’t eat a lot.

Between all that and a stop at the supermarket, we were both exhausted.  I don’t know if mom ate anything else today, and I’m not asking.

Tomorrow is my father’s birthday.  I’m guessing this will not be a festive occasion.

 

I knew cancer would be scary. I didn’t know it would be so damn tiring.

Brought mom for chemo today.  Tomorrow (Thursday) is her next day.  She’s thrilled.

She should be thrilled.  I can’t imagine what she’s been through to get here.  I’m not so happy, because I remember what her doctor said: with small-cell lung cancer, it’s not IF the cancer will return, but WHEN.

I’m not reminding her of that.  After all this, she deserves to celebrate.

“My scan HAS TO be exactly four weeks after my last day of chemotherapy,” mom forcefully assured me.  “I’m sure there’s some leeway,” I offered.

“Nope, it HAS TO BE EGZACTLY four weeks,” she insisted.

Four weeks to the day is Thanksgiving.  “Oh,” said mom.

“We’ll schedule it for the next week,” said the infusion nurse as she typed.

So I won’t be seeing her for Thanksgiving.  And I don’t know that she should travel until after she gets the results, in case some kind of treatment is needed.  So even Christmas isn’t guaranteed.

And if I don’t get some sleep I’ll never get up in time for chemo tomorrow.

Godspeed, Pat.  You’ll be missed.

 

Does it ever get easier?

I called mom early today.  I wanted to ask what my father might want for his birthday, which is coming up soon.

I never had a chance to ask.  Mom sounded horribly groggy and confused.  I’d woken her up.  She explained what happened today, but she wasn’t entirely coherent, so she said a few things that scared me and it took almost the entire conversation to try to clear up details.

As mom got home from her Procrit shot this morning, my father got a call from the nursing home that the family should gather, because his mother was near the end.  The entire family (except for me, of course,) gathered at the nursing home.  Some members of the family are better left home, so there was added stress on top of the fear of watching my grandmother die.

I never really found out what happened, but I gather from the lack of information that my grandmother didn’t die yet.  I do know that they were there for several hours.  I know that someone there was being difficult and causing problems for everyone else.  I know a nurse got yelled at for making the call and getting the entire family out there unnecessarily.  And that’s all I know.

Mom is understandably exhausted after all this.  And she starts the last round of chemo next week.  Her nurse practitioner told her that if she continues to feel this bad, they’ll prescribe another transfusion for her.  “I can’t do that!” she snapped at me.

“It made you feel so much better last time,” I reminded her.

“With everything that’s going on I can’t take NINE HOURS for a transfusion!” she howled.  “And your father is too busy to help!”

I didn’t point out that being too exhausted to go anywhere or do anything isn’t any better than sitting in the hospital for nine hours.

She became more confused and her words were more slurred as the conversation went on, but she didn’t seem to want to hang up.  I finally convinced her to get some sleep.

I don’t know what’s going on, and I can’t call my father to ask.  He might be asleep, and I don’t want to wake him and I certainly don’t want to scare him with an unexpected call.

When will things get better?

 

Exhausted, cranky, bitchy, short-tempered… and mom is wiped out today, too.

Yow, mom is pissed off at everything tonight, including me.  I’m surprised there haven’t been more days like this.  She starts her last round of chemo next week, and she’s sick and tired now.  She doesn’t think she’ll recover from the previous round by next week.

The nurses told her she’d feel this way, but she’s taking it personally.  I’m trying to get her to see that it sucks, but it’s temporary.  Mom doesn’t want to hear it.  She just wants to lash out.

We hung up very early, and she said she was going to bed.

 

Day two

No real news, chemo and Procrit shot today.  Tomorrow should be exciting.

 

Chemo round five, day one.

And all things considered, not a bad day of chemo.

For once, they were able to get blood from the port at the first try. I suggested to mom that she’s eating and drinking again, and that might have something to do with it. She denied it at first, but eventually she either understood or agreed to shut me up.

Because that went smoothly, she was out of there in only about four hours.

While she was there, she spoke with the NP about the possibility of coming to visit me for Thanksgiving. The nurse practitioner said she might be able to travel by then.

She’s nervous about a shot tomorrow and the brain scan on Thursday. I know she hates being trapped in that MRI chamber. I wonder if she would have kept smoking if she could have seen the reality of what was to come.

Mom was even up to a political argument tonight, though remarkably it wasn’t about the debate. Mom’s views are one more reason why I wonder if I’m adopted.

Chemo tomorrow should only be two or three hours. Hopefully she’ll get some rest.

 

Wow.

In the past couple of weeks, mom has figured out that if she keeps all the lights in the house off when we talk via webcam, her face is only illuminated by her laptop screen and I can barely see her.  Tonight I fought back and did the same thing, and finally got her to turn on the lights again.

Her face isn’t sunken and sickly anymore.

“I think the medication they’re giving me to improve my appetite is working too well,” she complained.  “I’m eating three meals a day!”

O, the horror.

She’s not fat, but I’m sure she thinks she is.  I almost said she looks healthy, but her color is terrible, her eyes are tiny and puffy from exhaustion, and of course she has no hair.  But her cheeks aren’t concave.  Her jawline doesn’t look like a weapon.  She’s actually eating.

The next brain scan is at the end of this week, Thursday, I think.  For the moment, though, I’ll take this as a success.

She read me the report of the bone scan.  The report showed minimal tracer absorption in her bones, but she was concerned about the part that described significant and symmetrical absorption in her kidneys.  I thought fast and realized that the tracer is probably processed through the kidneys, which is why it was accumulating there, and explained that and pointed out that if both kidneys are absorbing the same amount, they’re both working properly.  I’m making this up as I go–I have no idea how the tracer is metabolized–but it seems to make sense and made mom feel a lot better.

I think she was planning on staying awake tonight until 2130.  Considering how exhausted she’s been and how early she’s been going to bed, this is pretty impressive.  Of course, chemo starts tomorrow and the fun begins again.

She’s planning on bringing a tuna sandwich to have for lunch.  The first day is long, and she’ll be there well past lunchtime.  It’s the first time I’ve heard her plan to pack food to bring for chemo.

 

Is it? Can it be?

A good night for mom tonight.  Finally.  Of course, she’s less than a week away from the next round of chemo.

She was talking about her plans, all the travel she’s going to do and things and people she’ll see as soon as she’s able.  And she was also talking about someone she knows with cancer.  This woman checked out OK last month, and went back for scans this month.  She was told to put her affairs in order.  She’ll be moving in with her daughter to spend her last days there.

I know mom is wondering which of those two possibilities will be the one she gets.

I’m not wondering.  I refuse to hope.  The bad news will come, the only question is when.

Mom’s next brain scan is next Thursday.  The last one was difficult and she’s not looking forward to it.  I’m not looking forward to it, either.

 

Shhh! Day three.

Mom was a bit tired today, but otherwise felt good.

However, because she’s doing chemo and her resistance is low, she was stuck at home when my grandmother had to be brought to the emergency room. Can’t have mom there with her, breathing and touching the germs of uncounted sick people, during chemo.

I think it’s time to start planning another trip home. I haven’t even paid for the last one yet. American Express is cool with that, though, because they get to charge me 22% on that trip, and on the next one. But it doesn’t matter. I don’t know if I’ll see my grandmother again.

Life can be a bitch sometimes. And cancer is a bitch. But you know, the rest of the shitty things in life keep happening even though the cancer is eating up all of our attention. Shouldn’t we get a pass on all the rest of the pain, because we’ve already got our hands full?

 

Today’s mom-o-meter is … (flips coin) UP!

Mom woke up wondering what was wrong. There was no pain.

So she moved. Still no pain.

So she got up and started walking. Yep… no pain.

She’s thrilled, but a bit annoyed that she’s finally back to a good place just hours before chemo started. I’m hoping that the reason for the pain was the Neulasta, not because the cancer has spread.

I called at noon today to see if she’d had results from the bone scan. I didn’t ask because I didn’t want her to know how worried I am. She didn’t mention anything about it, so I assume there were no results.

She did say that they hadn’t started chemo yet, because it took over two hours to get enough blood to run the tests they need.

And tonight she kept talking far later than she’s been able to manage lately. I choose to take all these things as good signs.