Saturday, June 30, 2012

Not Sure about the Painkiller

I agreed to give the new painkiller till Monday, but I am not liking it.

The sleepiness has dissipated to be replaced by a kind of irritable depressed zombie mood.

I am going to try to go to sleep right now. Let's put this whole day to bed.

Remember, I said a couple of posts ago to feel free to call me. Don't IM that you wanted to call but blah blah blah :-)

Sent from my Verizon Wireless Phone

Friday, June 29, 2012

Oh Yuck

I have always loved sleeping on my stomach, but I haven't even tried to since my last PT appointment.

During that appointment, I had to lie on my stomach for some back massage. The pressure was too much, and I had to sit up. It was discomfort and nausea from that tumor squashing my stomach. Luckily, Jaime could finish the massage with me sitting up.

Tonight I thought I'd try sleeping on my stomach because I just could not get comfortable on my side.

Within 30 seconds of rolling over, I experienced a horrific sort of burp and had to sit up in bed.

I immediately drank some water, but had to rush out to the kitchen so I could swig some gatorade to get rid of the taste. Yikes.

I will not try that experiment again.

Sent from my Verizon Wireless Phone

New Painkillers

Over the last week and a half, I have had to decrease the time interval between doses of oxycodone from 8 to 4 hours. Otherwise, I was in pain.

So I asked Judy, my hospice nurse, what my next step ought to be. A higher dose of oxycodone, or try another drug?

She consulted with their pharmacist and came up with a plan. It's something for me to try, to see how it works.

Basically, I would switch to morphine, and have extended release pill every 12 hours, with the availability of immediate release pills as needed in between.

She ran the plan by me, and after I agreed, she sent the paperwork to Dr R, because he's the one writing prescriptions.

I made the switch yesterday. I was virtually pain free. That was awesome.

Plus, I didn't have to even think about pain for 12 hours. (With the other drug, every 4 hours the pain crept back up on me, so it was always in my face.)

But I was really sleepy. I slept for most of the day.

Part of that sleepiness might have been needing to rest after the excitement of Tinalynne's visit --- but part of it had to be the new painkillers.

Judy warned me that it might take a couple of days to adjust.

Today I am just a little sleepy. But mostly what I feel is a little wobbly on my feet. Not enough to feel as though I might fall, though. Do not want to fall!

Sent from my Verizon Wireless Phone

Thursday, June 28, 2012

Tinalynne Left for Home

At about 6:00 this morning, Tinalynne hugged me goodbye and headed for the airport with Lou and John.

We had a long tearful goodbye last night, so this morning we had agreed to have a light "Safe journey" type of goodbye.

Spending two full days with Tinalynne was super awesome. Lots of laughs, some tears, and some amazing memories.

Plus it gave me a chance to give her a few things that I wanted her in particular to have. We laughed at the idea that she could ever need a thing to remember me by, which is pretty silly, but it just makes me happy to think of her using certain things in her daily life.

I loved being able to talk about her new social worker job, which is not so new any more. Tinalynne is really good at ferreting out what is wrong with you (not exactly the politically correct way to describe her skill set) so being a social worker and therapist is perfect for her.

After they left for the airport, I went back to sleep for hours. And I'm crawling into bed again now. I think I just have to rest after an exciting two days.

Part of the exhaustion is emotional, I'm sure. You'll notice I'm not giving a lot of detail about what we discussed and how I felt. I do feel supported and loved in my choice to go to hospice, I'll give you that much.

Sent from my Verizon Wireless Phone

Wednesday, June 27, 2012

More Shopping Fun

We went shopping again today.

Tinalynnne is an LICSW therapist with actual clients. She gets dressed up for work (could you trust you therapist if she looked homeless?) so we shopped again today for dressy clothes.

So much fun!

But now I am lying in the back seat of the car resting. We used up all my energy. Maybe it was all the laughing! But laughing is so rejuvenating.

Our lunch plan is to bring home takeout from Genki.

Lou called to report that hospice is delivering a wheelchair and oxygen tank, which is sort of weird because we never discussed oxygen.

Tinalynne says she told hospice that they could not deliver equipment until it was needed. That is cool. I will implement that strategy too.

Sent from my Verizon Wireless Phone

Tuesday, June 26, 2012

In Heaven

I am in heaven, in a dressing room at Nordstrom, at South Point Mall, while Tinalynne tries on clothes.

There is a padded bench, thank God, and I am lying down because I am wiped out already.

We are the only people shopping right now so we have the undivided attention of the sales lady.

Heaven, heaven heaven!

Sent from my Verizon Wireless Phone

Monday, June 25, 2012

Happy Hospice Nurse

Judy walked in with a smile on her face and a genuine outpouring of warmth, compassion, and professionalism.

I knew right away that she would be the perfect hospice nurse for me.

Thanks, everyone, for your supportive comments. They helped.

That's all I have for now. I am actually sort of wiped out. Going to watch some trash TV now...

Sent from my Verizon Wireless Phone

Burned Out Nurse?

The hospice social worker and nurse came out to talk to us.

The social worker was great and described their services very clearly. But the nurse sort of freaked me out.

She was loud and brusque and very businesslike. When I looked into her eyes I didn't get any feeling of warmth or friendliness or emotional connection at all.

I was in a huge dilemma. My nurse friends had all led me to expect a warm caring person with whom I would establish a relationship and come to lean on in this difficult time.

So I am sitting there wondering how the heck to handle this. Rules of politeness say I cannot say, "I don't like you," but choosing my hospice nurse is too important to mess up.

I really feel like I no longer have to do things I do not want to do, deal with people I do not want to deal with... because I have limited time left.

So I apologized but made it clear that I felt no rapport with her and did not expect that to change. I said it was an intangible thing, nothing she said or did in particular.

The social worker said she could send another nurse. Then they left, and Lou stayed outside for a couple minutes talking to them. I wondered if he was having to apologize for my behavior...

But when he came back in, his first words were to say that he completely agreed with me and that I was really brave to express that.

We decided that if the next nurse is also unfriendly, we will call Duke Hospice instead.

The next nurse comes today at 2:00pm.

(My parents suggested that maybe this nurse is just burned out.)

Sent from my Verizon Wireless Phone

Monday's Agenda

1 Meet hospice nurse

2 Do minimal ironing so I have something to wear

3 Tinalynne arrives late tonight from Montana

Sent from my Verizon Wireless Phone

Okay to Phone Me

If you have my phone number, and you want to call me, please feel free to do so.

When we first realized it was time for hospice, we couldn't handle any phone calls. But that doesn't apply any more.

So, if you want to call, then call!

Don't worry about waking me up from a nap, or bothering me when I don't feel good. If I don't want to be disturbed then I power off my phone.

But don't call after 9pm --- which is sort of tough on our West Coast friends.

There will come a point when I stop taking calls. No idea when that will be. Better get your call in before then.

Sent from my Verizon Wireless Phone

Sunday, June 24, 2012

Dismantling My Office Today

Today, Darlene is driving us to my workplace so I can dismantle my office.

Actually I hear that all my stuff is already packed up. April packed up for me back when new carpeting was installed in the entire building. Then nobody ever unpacked.

The tricky part is that I want to bring home just a few select items. I want to abandon the rest!

So I'll have to dig through those boxes to find what I want.

I am also delivering a few select items to a few select people.

The rest, I am either throwing out --- or leaving for people to scavenge through.

It would make me happy to think that my magnets found a good home...

Or that maybe someone on my team took my glass shoe collection as a momento of the hours they spent trying to explain things to me...

Sent from my Verizon Wireless Phone

I am no doctor, but...

I wonder if having that tumor biopsy on February 20th contributed to this insane growth spurt.

Like, we stabbed it and made it angry.

But there is no way to really know. And we were making the best decisions we could make, at the time, with what we knew.

Plus, having regrets about choices we made, blah, that's not useful at all.

But this idea started swimming around in my head. The best way to get rid of it is to post it and let it go.

Sent from my Verizon Wireless Phone

Saturday, June 23, 2012

Time Crunch

Today we went to Bassett Furniture to sit on the sofa and chair we want, and everything was super comfortable.

Well, Lou and Cindy and Mike all agreed that it was comfy. I was uncomfortable and tired. I was ready for another painkiller, actually, and ended up lying on the sofa, which was comfy.

When we left, I took my painkiller exactly on time, 4 hours after the last one.

We ended up purchasing everything we need for the sunroom, based on recommendations from fabulous Celeste, our design consultant. Gosh this room will be so nice. You will have a comfy seat and pretty view no matter where you sit.

Usually it takes 30 days for custom upholstery, but Lou asked for a quicker time frame, since I'm in hospice now.

The furniture will be delivered in 3 weeks, instead of 4 weeks! Yippee!

The sunroom has always been our favorite space, and now it will be beautiful.

Sent from my Verizon Wireless Phone

Thursday, June 21, 2012

Tumor Doubled in Size

No wonder I can't eat anything.

The tumor near my stomach has MORE than doubled in size and is squashing my poor stomach terribly.

This is really really bad news.

This tumor is growing very aggressively.

Strangely, all the little tumors in my lungs pretty much stayed the same size. But even though that is great news, it's not enough to cancel out that the other tumor grew so much.

Dr Reidel explained my options. For the first time ever, he talked about hospice as an option.

I got really choked up and asked if that meant we were giving up.

Dr R said hospice isn't about giving up; it's about changing the focus to make the most out of every day that's left.

He said it used to be that hospice wasn't mentioned till very very late, and then the patient was dead a week later. But there are studies that show that when hospice starts earlier, people live longer.

The hospice nurses are expert at managing the pain and quality of life issues to make the most out of every day.

Can you tell where this is going?

Of course, I could do chemo again instead. But the track record of this chemo is nothing to write home about.

Plus, after going through chemo SEVEN times already, I really am having a hard time with the idea of going through it again, especially since I am already so miserable and exhausted already on most days.

We did meet with the clinical trial protocol nurse to get the facts. It turns out I know and love this nurse (Lynn) from the Duke chemo treatment room! She just switched jobs.

But after hearing more details, I just became very clear that I am done with chemo. I just don't have it in me.

So it's time for hospice.

Please don't call me tonight. Both Lou and I are devastated and don't want to talk to anyone yet.

Leave me a comment instead!

Sent from my Verizon Wireless Phone


I am lying on exam table in semi dark room with migraine waiting for Dr R to come in and tell me my results.

I am actually pretty comfy.

Sent from my Verizon Wireless Phone

Wednesday, June 20, 2012

Feeling Okay Tonight

I'm in a kind of limbo tonight, waiting for the scan results tomorrow.

What I mean is I don't feel anxious or scared. I just really want to know what is happening in there.

Based on how I have been feeling, I'm pretty sure the tumors have grown. So I am expecting bad news, it's just a matter of how bad.

We see Dr R at like 10:30am. I'll post results when I can.

Thanks for your support!

Sent from my Verizon Wireless Phone

Tuesday, June 19, 2012

Woke Up With the Birds

Serious stomach pain woke me up this morning at 5:30am.

Nurse Heather had said to manage that pain just like the back pain, so I took a pill instead of just suffering with it.

And now I feel completely fine.

Thank God. I have to go to Duke for my CT Scan today, and it would be a much more difficult outing if I am miserable.

Sent from my Verizon Wireless Phone

Monday, June 18, 2012

Scan Day Tomorrow

Tuesday is Scan Day.

Our neighbor Carl is driving us up to Duke for the CT Scan.

We'll hear the results from Dr R on Thursday.

Right now, I am in bed, exhausted. It was a pretty good day.

For dinner, I ate about a half cup of cream of something orange-colored soup, and I feel grossly stuffed. Totally freakishly Thanksgiving Dinner stuffed.

The guys had Loy's homemade jambalaya, followed by ice cream. They are playing golf again early tomorrow morning.

Sent from my Verizon Wireless Phone

George is Here!

Our old pal George is here for a couple days!

Lou worked for George a million years ago at Pacer in Massachusetts. And they are working together now at Endicia in California.

The guys are golfing today and tomorrow. Well, George is golfing and Lou is driving the cart.

Lots of laughs when George is around.

Today I think is going to be a good day. Right now I am in bed, recovering from breakfast. (I feel awful for awhile after I eat.)

I just talked to Dr Reidel's nurse Heather, and she was very helpful and sweet. She suggested grazing little bites all day, taking painkillers, and especially staying hydrated.

I have not been drinking enough water, so I'm making an effort now.

So far today, I am not miserable! Yahoo!

Sent from my Verizon Wireless Phone

Saturday, June 16, 2012

Feeling Great

Inexplicably feeling great this morning!

I wanted to post that as soon as possible, because Friday was so awful.

No stomach pain, lung pain, hip pain, or back pain!

Well, okay, my lower back is tight and achy. And I am about to go for my walk, so soon I will be exhausted and headed for a nap.

But all in all, I am like a different person today.

Thanks for all the funny distractions you all sent me yesterday. Puppy videos, puns, jokes... they all helped me get thru the day!

Sent from my Verizon Wireless Phone

Friday, June 15, 2012

Plumbers in the Backyard

No, that's not code for constipation. There really are plumbers in the backyard.

They are installing an extra water faucet inside the fence for Lou's convenience. They are working right under the bedroom window. It's interesting to listen to them.

The painkiller is kicking in.

I didn't mention it before but this morning whenever I took a deep breath, I would have pain in a couple spots in my lungs, which I assume are the tumor spots. But now that painkiller is kicking in, those pains are gone.

On a day like today, it's hard to blog. It's hard to find something cheerful to include in the report. I can sort of imagine that it will be harder in the future. However, I do expect things to improve when I start the next chemo. It will beat back the cancer.

Sent from my Verizon Wireless Phone

Cheer Me Up

I am miserable right now.

I had a tough night. My stomach hurt so much, it kept waking me up. Plus my left hip is killing me.

So it's a combination of stomach pain and constipation from the painkillers.

I tried to make myself walk around the house, but right now I am curled up in bed, just basically enduring minute by minute.

I could use some cheering up.

Sent from my Verizon Wireless Phone

Thursday, June 14, 2012

Better Today

Just woke up hungry, stomach does not hurt, hip does not hurt! Happy dance!

Lou just left with Bailey for a 2 mile walk to the gate.

I have PT this morning.

Sent from my Verizon Wireless Phone

Wednesday, June 13, 2012

Blah Morning

Last night, I slept 11 hours!

You'd think I'd wake up bright-eyed and bushy-tailed, but no. I woke up with a stomach ache and left hip pain.

I drank the tea Lou made me, but couldn't face breakfast.

At 10:30am, a design consultant from a local furniture store is coming to see the sunroom so she can suggest how to furnish it. So I need to be showered and functional for that.

Sent from my Verizon Wireless Phone

Tuesday, June 12, 2012

Can't Eat Much

I don't think I have said anything about how I have been eating small amounts since coming home from the hospital.

For example, for breakfast, Lou might make me two eggs and one small toast, and it's a struggle to eat the toast and the yolks and a little eggwhite. Then I feel grossly full for awhile.

At first I thought my small appetite was a result of the surgery, but then I realized I was eating even less as time passed, instead of more.

So I started to wonder if perhaps the tumor between the pancreas and liver had grown and was pushing on my stomach, making me feel artificially full.

I ran that idea by Dr R yesterday, and he agreed that it was possible. We'll know when we do the next scan.

Currently the next scan is set up for next week, but we talked about pushing it out one week because I am still sort of weak. We need to be able to jump right into chemo after the scan, so I shouldn't be weak.

By weak, I mean still sleeping a lot during day and still not walking very far.

Hey, this morning I walked to the top of the hill again! It was Mary Beth's comment from yesterday that prompted me to do it. Otherwise, I probably would have wimped out and skipped the walk altogether because I have PT at noon. Thanks, MB!

Sent from my Verizon Wireless Phone

Monday, June 11, 2012

Top of the Hill

I made it to the top of the hill today!

I walked all the way up the hill, pretty slowly, but I made it. Lou and Bailey accompanied me as usual.

My back was fine during the walk. So I guess my stamina is improving.

I still have a funny gait. I will ask Jaime about it tomorrow when I have PT.

Sent from my Verizon Wireless Phone

Friday, June 8, 2012

Good Day

It's still early, but today is shaping up to be a really good day.

I woke up at 6:30 and caught Lou sneaking out to the hot tub. (I am still not allowed to submerge myself in water yet.) His back has been bothering him, and the hot tub helps.

I felt pretty good and started my PT exercises. They were taking forever because I was just lying there not moving in between each set. I'd think, "Okay, let's go, lift that leg," and nothing would happen.

What finally got me moving was that Lou popped his head in the bedroom and asked me to make him a salmon bagel for breakfast.

I haven't made him breakfast in so long --- I am usually asleep till long after he's eaten. So I was psyched to be able to do it today. Plus he's always hungry after soaking in the hot tub, so I knew if I dilly-dallied too long, he'd make it himself.

After breakfast, my friend Julie dropped in for an hour to talk. We even walked to Joe and Peg's mailbox, very slowly of course. (My PT person verified that it was okay to walk up the hill.)

After my walk, I sat on ice and started feeling tired. So Julie split and now I'm back in bed, ready to fall asleep.

It's already been quite a full day!

And I feel a lot more cheerful today.

Sent from my Verizon Wireless Phone

Thursday, June 7, 2012

PT Wiped Me Out

Today I had my second PT appointment, and it wiped me out. When I awoke from a two hour nap afterward, I had nerve pain at my ankle. So maybe this appnt was a bit too ambitious.

Anyway, I spent the rest of the day up and down, iced and not iced. Oh, and I took a very short walk with Lou.

Now I am completely exhausted, in bed, ready to fall asleep.

I thought that I would be a lot more recovered by now. I am still sort of a wreck, and it bums me out. However, I realize that PT will do wonders. So I will do my exercises and make progress.

Sent from my Verizon Wireless Phone

Wednesday, June 6, 2012

Tummy Ache

I spent the morning sick in bed with a tummy ache and an empty bucket close by just in case.

At about 12:30 I woke up feeling a lot better. I did my three sets of stretches that PT Jaime gave me, and then I had a bowl of chicken soup that Lou heated up for me.

Then my back started killing me, which made sense, because it had been 16+ hours since I'd taken a painkiller.

I took a pill and crawled back into bed to wait for it to kick in. Rex Stout kept me entertained. That is, I'm re-reading "Three at Wolfe's Door."

So now I feel okay and have to get up. Lying around in bed all day is not good for ya.

Sent from my Verizon Wireless Phone

Tuesday, June 5, 2012

Physical Therapy

My neighbor, Peg, drove me to my first post-surgery PT appointment this afternoon.

I learned a lot. One really important thing I learned is to take only one walk per day.

On that walk, I need to listen to my body and let my back decide when the walk is over, instead of trying to stick to some arbitrary distance or time goal.

I got some simple stretches to do at home. And I pledge to do them.

Jaime evaluated my status, did some stuff to me, and then put me on ice, which felt great.

On the drive home, we stopped at the vet to pick up heartworm and flea pills for Bailey. They were $23 cheaper than the 1-800-petmeds price!

By the time I got home, I had nothing left. I walked so slowly into the house! I went straight to bed and slept till 8pm.

I woke up starving. Luckily, Brent and Lori had dropped off curry for dinner. There was some delicious pickled veg in the curry; I'm going to have to ask Lori what it was.

Of course, it's bedtime and I am a bit awake. But I am hoping to be sleepy soon.

Sent from my Verizon Wireless Phone

Sunday, June 3, 2012

Minimal Nerve Pain

I had very little nerve pain to deal with this weekend!

That was a huge relief.

I had a little bit when we were driving home from my Healing Touch appointment, so I stretched out across the back seat in Nick and Sharon's car, and it went away.

I felt great, otherwise, after my HT appointment.

Actually, I felt so good on Saturday that I decided to try again to go from 10mg pills to 5mg pills.

If you remember, I tried this two weeks ago. It didn't work out then, and it didn't work out this time either.

I got through the day okay, but then woke up in the middle of the night in incredible pain. Like I hit a wall of pain.

I went back to the 10mg pills. But today was awful because it was like I had to play catch up. Even though I was back at the right dose, I was in pain for most of the day.

I expect to wake up tomorrow in much better shape. And I will not mess with the pain meds again.

When I am in pain, all I want to do is lie still and not make it worse. I don't want to get up and move around at all.

Of course, getting up and moving around is exactly what I need to do to get better.

So messing with the painkillers is counter productive.

Sent from my Verizon Wireless Phone

Friday, June 1, 2012

No More Giant Feet

Today I woke up with normal-sized feet and ankles!

The excessive swelling, probably from all the IV fluids, is gone. I have been taking a big dose of diuretic, upon the advice of my fantastic primary care physician. It worked.

In addition, my weight dropped 17 pounds! Now that is a lot of fluid.

However, I am still a bit diabetic. The amount of long-lasting insulin that I need to inject is still decreasing (so far, from 26 units to 16 units), so I am hoping eventually to be completely not diabetic again.

Sent from my Verizon Wireless Phone

Too Much Exertion

At the time, my outing on Wednesday did not feel like too much exertion. But when we got home, I crashed and went to sleep. When I finally woke up, I was upright for about five minutes before the nerve pain started near my ankle. I kept walking around, hoping it would go away. It got stronger and more painful than ever, with every second that passed. In the end, I practically threw myself back in bed to escape the excruciating pain. Luckily, after awhile, that pain went away while I was lying down.

That is what all Wednesday evening and night was like. I could get up for about five minutes, but then I had to lie back down to stop the nerve pain from getting out of control. Sitting did not help. Only lying down helped.

I was just hoping that when I woke up Thursday morning, it would be finished, after a good night's sleep.

On Thursday, I was about to stay upright for quite awhile before the nerve pain started. That was an improvement. Plus, I realized that it took only about 5 minutes of lying down for the nerve pain to go away. That meant that I didn't have to lie there for 45 minutes -- I could lie there for 5 and then get back up again. So Thursday was a lot better than Wednesday.

I forgot to mention that Lou and I talked to the nurse practitioner on Wednesday about the nerve pain. She said that it could be a normal part of the healing process. The best thing that she said was that just because it is happening now, that doesn't mean it will keep happening. It might be temporary.

I sure hope it's temporary.

Can I learn from my mistakes? Well, there was an outing planned for today (Friday). Our neighbors, Nick and Sharon, were driving me and Lou first to my Healing Touch appointment with Amelia Vogler at The Healing Space, and then to the Bonefish Grill for dinner.

I realized that this was exactly the kind of double outing that nearly killed me on Wednesday. So I cancelled the dinner part. It broke my heart, because we would have had a lot of laughs at dinner. Nick and Sharon were really nice my cancellation. They are still going to drive me to my HT appointment, but then take me right home afterward.