Another learning experience.

Apparently everything mom went through yesterday was a way to get me to give her a throw pillow to sit on. Now that she’s got one, she pushes up on the chair instead of pulling on the walker, and she gets right up. “See? I told you!” she says proudly every time.

Why she simply didn’t say “May I have a throw pillow?” is a mystery to me.

Ah, chemo brain.

Over a month and a half ago, I started the process of getting an oncologist here for mom’s visit so mom could continue chemo while she’s with me. I got a recommendation from someone who is very pleased with his doctor, and one other person has confirmed that recommendation. His office has been a breeze to deal with. They gave me a list of information and reports they need and a toll-free number for their fax. I called mom’s doctor back home immediately and asked them to send the information. “We’ll get right on it,” they promised.

A month later, after they’d been telling mom they’d long since sent the information, I called to ask where it was. “Oh… uh… I just saw someone walk by with it. We’re sending it out right now.”

 

Are we getting to the end of treatment?

Mom starts the last round of oral chemotherapy in a few hours.

“I hope I don’t have to do this again. My hair is starting to grow back,” she said. I tried to remind her that her hair is not what’s important.

She also got the results of the brain scan. “There’s no activity!” she announced.

“There’s no brain activity at ALL?” I asked.

“Very funny,” she told me, which IS a sign of brain activity. She also knows that while this is not a clean bill of health, it is a very good start.

She commented that Wiis were on sale at Target, and they actually had a few. “You should get one for yourself. You’ve earned it,” I told her. So she did. Now I have to get to the store and get her some games. I wish I had a clue what kind of games my mother would like.

Normal life is starting to look like a possibility, at least for a while.

 

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.

 

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.

 

Good news!

I just got a call from mom.  She never calls during the day, so of course my heart skipped a beat when I saw who it was.

She just got a call from the radiation oncology nurse.  “I hope you don’t mind that I called,” the nurse told her.  “I didn’t think you’d want to wait until Wednesday to hear about this.”  (Mom’s appointment with this doctor is on Wednesday.)

Mom’s brain scan is clean.  The tumor they targeted with radiation is completely gone, they can’t find any cells at all.

I didn’t ask about the other tumors in her brain.  The one they went after was the largest and in the most dangerous location.  It was causing double vision and balance problems and other problems.  And it’s completely gone.

I have very mixed feelings about this.  Naturally I’m thrilled.  I want to believe we’ll never hear from that tumor again.  But I know that cancer is sneaky and determined, and I’m terrified that we’ve gotten rid of it in one place and it’ll appear somewhere else.  I’m afraid that they don’t see any cells there, but a few are still there, hiding, and they’ll come back.  I’m afraid to hope, knowing that to fall from a safe, low position is difficult, but to grab that hope and climb up high and then fall is far, far worse.

I wish I knew what to expect.

 

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.

 

Not a lie?

Mom might have been feeling better today.  It was late when I called her, and she was tired.  Maybe the transfusion did some good.

 

Who was that unmasked woman?

Mom sounds wonderful tonight. Today was her last day of radiation, and she told me all about the tearful goodbyes. She and dad had breakfast (I guess they’ve found a new Portuguese bakery that makes killer breakfast sandwiches and pastries,) and then she went on to chemo.

Chemo didn’t start easily. It’s been close to two months since she’s been there (I think,) and they had a hard time getting the port started. She was worried that they’d have to replace the port, but the nurses say no. After an hour of trying to force saline into it and draw blood out of it, they finally got it going.

That meant that mom was at chemo for longer than expected, and she had to call a friend to ask for lunch. While I know that she ate a small lunch, she DID eat, even though she had to ask someone to go out of their way. That’s a very good sign.

She told me all about the rest of her day, and the progress being made to get the house on the market. She even sounds hopeful about the price she’ll get for it. (This is a sure sign she’s completely insane.) She did a little decorating, she got some more work done on some projects, and on and on. She sounded happy.

It’s like she’s facing death and has decided that she doesn’t have time for that right now.

She’s a much better person than I am.

She talked for so long about so many things that finally she apologized for talking too much. Of course I told her that she’s not doing that.

She mentioned that the nurses at chemo were asking her about depression, if she ever cries, and how she’s feeling. She told them that she feels fantastic. The nurses even pointed out that she came out of radiation well–most patients have pretty bad burns, but she doesn’t.

If I’m getting the whole story, things are really going well and looking hopeful.

 

La la la la la I can’t hear you!

I keep remembering mom’s doctor telling me “Your mother hears what she wants to hear.”

There’s a major drainage problem at the house mom is planning on selling. She’s got a brilliant idea for fixing the problem. It involves running a downspout across the yard. It’s going to fix everything.

I’ve got a brilliant idea for fixing the problem. Call the contractor who built the addition and tell him that the water is running off the roof and into the basement. Tell him to fix it. He built it, now he needs to make it right.

She agreed. She knows that if she agrees with me, I’ll stop saying things she doesn’t want to hear. I’ve got a fiver that says there will be a downspout running across the yard next week.

It’s infuriating. She does it all the time. She asks for my advice and then searches for someone to contradict me. Then she does what she wanted anyway. And she doesn’t understand why it didn’t work.

She’s doing it to her doctor, too. He’s telling her things she doesn’t want to hear. She’s agreeing with him and believing what she wants to believe.

This may be the one time in my life when I think this is a good thing. It’s enabling her to believe that she’s going to beat this cancer. And the only way she has a chance in hell of beating it is if she fights it as hard as she can and believes without reservation that she will win. I’m not going to say a single word to disagree. Her denial is the only hope I have. And her skills at this are unparalleled.

But damn, I wish she’d listen to me about all the other things.

* * * * * * * *

On a lighter note, I’ve just heard that one of my favorite blogs is up for three awards. I think she more than deserves them, so I’m hoping that both of my regular readers (and everybody else, too!) will head over there and throw some votes her way. When you’re done, check out some dessert recipes that made me what I am today (fat and happy,) and some incredible knitting projects that never fail to make me smile.

Please show some love to Hannah Kaminsky, her blog, and her book My Sweet Vegan, and tell her I sent you: http://bittersweetblog.wordpress.com/

 

Another good day.

I’m almost afraid to write these things, because I don’t want to curse myself.

Mom is making plans about all the things she’s going to do when this is over. She’s going to sell her other house. She’s going to buy one near me. In fact, she wants me to send her real estate booklets so she can see what to expect in the area. She’ll spend half the year here, and half the year at home.

She cleaned out her bedroom, and threw away a bunch of stuff she doesn’t use any more. She’s going to sell her baby grand piano (to a smoker, I hope,) and tear up the carpet and redo that entire room. She’ll take the money from the baby grand and buy a keyboard, and she’s going to play it.

Oh yeah, and she’s going to beat this thing. Her doctor is very hopeful.

When she said that I remembered what he said to me after speaking to her. I had thanked him for leaving her so positive and upbeat. “Your mother hears what she wants to hear,” he told me.

The webcam is working. Now I have to figure out how to connect. It’s strange, being an old school geek facing a problem for the first time that most folks probably take for granted. But I’ve got to get up in a little over six hours, so it’s not happening tonight.

 

good/bad

I just got off the phone with mom.

She’s now down 22 pounds from the day of the diagnosis and “only 15 pounds over my target weight!”  But she promises she’s eating more, especially since it’s been almost three weeks since the chemo and her appetite is coming back. I don’t know what to believe. I don’t even know if I should believe 22 pounds, or if it’s worse than that.

She went for her CT scan today, for her mask. Mark calls it a beekeeper’s hat. Mom calls it a fencing mask. It helps them direct the radiation treatments to the right location in the head. The mask was applied, and she got the first treatment to the brain.

When she went to get the mask made, she brought a gift with her. Friends from the other side of the country sent a teddy bear, and mom had it with her this morning. When her mask was done, the tech asked if she’d like a mask for the bear.

“Sure!” mom said. She’s decided that when this is over, she’s going to take the bear to the hospital and visit children who have to go through the same procedure. It’s something she’d be exceptionally good at. (Sometimes I wonder if I was adopted. I’d be terrible at that.) And, most importantly, it gives her a plan for something to do when this is over.

She talked a couple more times about the things that she’ll do when this is over. I’m very afraid that these things aren’t going to happen, but I will cut out my tongue before I say a word which will give her my doubt. If she doesn’t go into this with a positive, determined attitude, the treatment alone will kill her, never mind the cancer. We will maintain this hope for as long as there is the slightest spark of hope alive.

 

I refuse to get excited.

Cancer ‘Cure’ In Mice To Be Tested In Humans

ScienceDaily (June 28, 2008) — Scientists at Wake Forest University Baptist Medical Center are about to embark on a human trial to test whether a new cancer treatment will be as effective at eradicating cancer in humans as it has proven to be in mice.

The treatment will involve transfusing specific white blood cells, called granulocytes, from select donors, into patients with advanced forms of cancer. A similar treatment using white blood cells from cancer-resistant mice has previously been highly successful, curing 100 percent of lab mice afflicted with advanced malignancies.

The study is here: http://www1.wfubmc.edu/tumorbio/srmouse/

The opinion of a person with limited science training and a moderate, amateur interest: I find this to be the most promising news I’ve seen in a long time.

Which means nothing, of course.  This may not translate into a useful therapy for humans.  And I recognize that even if it treats some cancers, it may be useless against small cell lung cancer.

But I’m still going to do everything in my power to obsess about this instead of all the things that usually worry me at four in the morning.  Maybe the dreams which are fueled by fears and sunlight will be a little less terrifying tonight.