Lynnemw

not feeling so hot

2006-08-20T21:12:00.000-04:00

I've been feeling more short of breath and sick and think the fluid may be back, so I'm going to contact my doctor tomorrow, and likely they'll send me to the ER again. I'm hoping they will just xray and drain it if needed, but I suspect they'll make me do the ER thing. It's so exhausting.

Jill and Jen will take me in if I"m directed to. I can barely make it from my room to the bathroom, and it's only about 5 feet. I get extremely out of breath and it is frightening when it happens.

I can't deny that I'm very tired of all this. I'm angry, frustrated, and going back to old feeling of the unfairness of it all.

I'll do my best to keep you posted, but just don't know what will be happening or when I'll be back online.

xxoo to all

LOTS OF CARE

2006-08-14T17:13:00.000-04:00

Care-full.

I'm being taken very good care of by Jon and Jen, at their house. I've taken up residence for now in their spare bedroom. I have everything I need, they fix nice healthy meals and bring them to me. I have the TV, cable, my laptop, books and magazines, a comfy bed,, and my new necessity: oxygen. I have come to appreciate O2. Life-giving.

not so much fun

2006-08-11T22:29:00.001-04:00

well, no place fun.

In UM Hospital for 5 days. I came home from TC, and on Monday I called my doctor to describe how short of breath I'd been, she sent me to the ER.

I had a plerual effusion (fluid between the lung and chest wall. They removed a full litre of fluid and my lung reinflated (it hadn't collapsed, really) and kept me till they did all the poking and proding they felt like doing.

I have had some vision changes in my right eye, and they assesed that by making sure I don't have any brain tumors (thankfully), but there is fluid beneath my retina which will be further evaluated. It could be the cancer. I will see some big-shot retina specialist in a couple weeks.

My oxygen level when I got there was low, and I've been on oxygen since, even now. Fun times, let me tell you.

No telling if and when the fluid will come back... but it probably will.

Can you tell I'm not too happy about these latest events?

I'll keep you posted.

not so much fun

2006-08-11T22:29:00.000-04:00

Home

2006-08-06T23:16:00.000-04:00

from TC. I enjoyed seeing friends and being out in the real world, since all I've done lately is lay on the couch. It did wear me out completely, and I had some sick times. I've got some issues to take up with my doctor th is week, as I'm continuing to have a lot of nausea, and have developed some new issues I'll talk more about later. I suspect I'll have a round of miscellaneous tests this week.

for now, it's off to bed

zzzzzzzzzzzzz

TC or bust

2006-08-03T10:02:00.000-04:00

heading up today to return mid-day Sunday

wish us luck

at this point

2006-08-02T12:09:00.000-04:00

the trip to TC is still on. I'm struggling with medications, etc, but I feel no worse than I do today, I'm going! I might as well feel lousy there are here, and I can sleep in the car since someone else will be driving.

I'm close to Munson Medical Center, to my old doctors, and lots of beautiful things to see.

Still here.......

2006-07-26T10:35:00.000-04:00

I've struggled with more nausea this week. It's been frustrating, but I'm doing ok. I just need to continue to rest and recuperate, while making sure I use some muscles. A fine balance to find, sometimes, but the chemo really does knock me out.

I have a long weekend in Traverse City planned for the first weekend in August, and I scheduled my chemo around it so I can enjoy it as much as possible. It will be 4 weeks out from a treatment, so I should feel pretty strong and healthy (barring any unforeseen problem) (positive thinking, here, I'm going to be fine that weekend!) My friend Hesper and her husband will be out of town, and offered me their home while they are gone. I'm going to go up with Jill, my sister Marsha, and her daughter. Marsha has never been to TC, and she and Chrissy (and Chrissy's dad) have lived in Houston for the last 25 years, and so this will be very new to Chrissy. She's not sure what to expect, I think, she is thinking: trees, a lake or two....not understanding how beautiful the area is. Of course I'm so prejudiced because it is my dream to have lived there, and I never wanted to leave. I find it so incredible. It is a soothing and calming area, for me. I love the farms, the orchards, the lakes, the forests... not the busy lake/home areas...not the built-up parts, (there aren't too many, thankfully) but the open beautiful parts.

I'm so excited.

If you are unfamiliar with northwestern lower Michigan, please check out these links. I highly recommend it as a vacation destination. Miles of sugarsand beaches, no crowding, completely preserved, and has the most incredible sunsets into Lake Michigan.

http://www.record-eagle.com/area_guide/
http://sleepingbeardunes.com/

Better

2006-07-22T20:12:00.000-04:00

I'm feeling much better now. Thanks to Marsha who helped me out all week, and thanks to time for passing and giving my body time to recover.

I'm looking forward to a much better week this week.

ugh

2006-07-20T20:52:00.000-04:00

been wiped out once again by the treatment and have been in bed (or couch) all week. I hate feeling so sick, and wonder if I can take this treatment much longer...

I need a break from it, that's for sure. I get knocked flat and can do nothing but lie down and be served. My very sweet sister Marsha has been here taking excellent care of me. I don't want for a thing, and she's cleaned and done laundry and taken care of Master Pogo.

I'll write more soon.

Feeling good

2006-07-15T09:50:00.000-04:00

Yes, the port insertion went very well. I was quite nervous, but it was easy. I was nervous about what sedation medication they would use because they wanted to use Fentanyl, which I've had a reaction to. They tried to convince me the amt they'd use wouldn't be a problem, but I refused and made them use something else, and all went fine. I was just drowsy as they numbed the area of my arm where it would go. It's pretty cool, it's a small device, about 3/4" in diamieter, that lies flat under the skin, completely covered. There is a tube that is threaded into a vein and is left there for use in administering meds, getting chemo, getting blood draws, or anytime they'd need to insert an IV. It will prevent me from being jabbed a zillion times, as my veins are quite shot. I did ok for the first chemo course I had, but it's gotten more and more difficult as time passes, and I can't take the torture of IV insertion and drawing blood anymore. The veins actually shrink, get hard, roll around, due to the abuse they've taken. Then when I go for my chemo, or whatever, you put numbing cream on, and they insert a needle into the port and infuse away. It is invisible under my skin, yet has easy access. It will be great.

So, I had my treatment, plus added Neulasta, which will keep my white counts up hopefully (it will) and I will probably not feel as tired, and won't be at risk of infection as has been happening over the last few months.

I'm just going to rest today, and I'm thinking of attending a family gathering this evening. We'll see.

all went well

2006-07-14T20:53:00.000-04:00

Just a short post to let everyone know that treatment day went fine. I had a port inserted, and that went very well, and it will be soooo nice. I should have done it long ago.

I'll be receiving Newlasta along with my chemo to prevent, hopefully, the drop in my white count which allowed the recent cellulitis to knock me down...

and we'll go from there

I'm tired, it was a long day, and I'll post more tomorrow.

Murderball

2006-07-13T23:12:00.000-04:00

Netflix rental

A movie recommended by http://www.kidsisinhollywood.blogspot.com/ several months ago.
A documentary about the 2004 Olympic rugby team (I'm pretty sure it was 2004) made up of quadraplegics.

Excellent. Inspiring, informative, touching, but by no means do you feel sorry for anyone on the team.
They made their lives a challenge and a success.

Great rental. Highly recommnded now by me.

Not much to report

2006-07-09T07:50:00.000-04:00

I'm doing pretty well, just tired. My foot is doing much better, and I'm just continuing to recooperate. Apparently it takes a while to do this.

I'm a Netflex chick now, I've received my first 3 movies. 40 Year Old Virgin (moderately funny, much profanity), Broke Back Mountain (haven't watched it yet) and Rear Window (the original with Jimmy Stewart...I don't think I ever want to see the Chris Reeve version) (this choice was prompted by my recent hospital visit and having been wheeled back into my apt in a wheel chair. Once I was settled on the couch, Jill took over the wheelchair to practice wheelies. She then went out on my balcony, which of course reminded me of Rear Window. I'm telling you, if I wasn't on the 4th floor, I'd teach my dog to ride down in a basket to go potty) Jill has never seen the movie, so one of these nights, we're going to watch it. Great movie, as I'm sure you all know.

So, here it is not even 8am on a Sunday morning and I'm thinking of watching a movie....nah, I'll wait til later....I like the CBS Sunday Morning show. It's gentle and has nice stories for a Sunday morning.

I need Netflix

2006-07-05T11:00:00.000-04:00

I'm continuing to improve from my bout with cellulitis. I am a pro at propping my foot now. I'm taking it easy, the swelling is minimal, so knock on wood of all kinds to hope that stays that way.

I'm enjoying napping and doing nothing, but admit I'm bored and wish I felt up to going out. I need more movies to watch, but can't go get them.... I'll have to send someone. :)

That's all I have as an update...

I'm improving, feeling better, and the ankles aren't nearly as fat.

You just never know what challenges lie ahead

2006-06-30T18:43:00.000-04:00

Ok. I'm tired of watching television, and I can't seem to get into books, as I'm often drowsy, but I've watched a lot of HGTV, TLC, Bravo, dancing shows, talent shows, talk shows, celebrity reporting...you name it.

My sisters Carolyn and Marsha have been taking good care of me the last few days, being at my beckon call (or beck and call however you are supposed to say that). They, along with my kids, have made sure that I've had meals, clean clothes, and a clean house, and good conversation. In addition, my sister (in law) Karen took a lot of time and love to make many meals that have been frozen and await heatin. She claims she 'isn't the world's greatest cook', but take my word for it, the food is delicious and very much appreciated.

A funny thing happened when Carolyn was here, though, when I decided I wanted some fresh air and took the Amigo out to take the dog out, and a storm was moving in. There was a lot of thunder and as I was hurrying the dog and motor-scootering from tree cover to tree cover and I realized that wasn't too safe, so I came in. I figured I have been getting every complication that I could possibly have and that somewhere above, where challenges are metered out, there just might be one more for Lynne that said: "strike by lightening". I haven't had that one yet, and with MY luck I might. So I scootered in quickly, and made it in safetly.

whew!

(humor, in case it isn't perfectly clear) :D

Cellulitis

2006-06-27T16:17:00.000-04:00

Been in the hospital for a few days with cellulitis in my feet, particularly the right one. I'm home now, lazing on my sofa, with people taking care of me.

It's always something....each week a new challenge.

But I'm hanging in... and holding on.

send love and hugs

wireless router

2006-06-21T23:16:00.000-04:00

Still feeling quite tired after last week's chemo. Not sure which of the myriad of things is making me so tired, so I just rest as needed.

I feel as if I'm not doing a good job manning the blog, but haven't had the desire to sit here and write. If only I could get my wireless to work! I can't make my router work, and therefore I can't use my laptop while I'm resting watching tv.

I just don't get it, because it worked at Jill's house! I may give it another try.

try this link

2006-06-19T13:44:00.000-04:00

http://www.lulu.com/NewLeaf

Hopefully the link is working correctly, as the book is finally ready!

I am excited, and hope you all enjoy this. It is a 9x7 paperback version of What in the World is a Pogo?

Hardcover to come.

Treatment

2006-06-16T23:04:00.000-04:00

went fine...I'm very tired, so I'm going to bed. My glucose levels are screwed up from having to take the steroid for the treatment, but I know it will level out again... I imagine that I will have to deal with this every treatment time, and what can I do.

I just have to say I am so tired of being sick. I need a nice fun, life focus. hmm. A vacation. Too bad I have no frickin money for one. Trying to get to TC, need to figure that out. My biggest obstacle for that is how to take my Amigo, I have no way to transport it. I need a carry-thing and a trailer hitch, but again....no frickin money.

I'll make a wish and maybe when I wake up in the morning there will be lots of money under my pillow, my sickness will be gone, I will be in a lovely lakeside home, I'll have someone to take care of me (and visa versa), and the past 2 years will be just a dream.

huh.
right

nite

I feel like me again.

2006-06-14T17:53:00.000-04:00

It feels as if I've weathered this latest crisis. My blood glucose numbers are returning to normal, my strength has mostly returned. Only my ankles are swollen, but I guess that will improve as well. They were swollen before the latest crisis, so maybe they will never be quite normal. I'm anxious for that to resolve so I will feel like a safe driver. I haven't driven my car in 3 weeks, and I want to make sure that I have strong movement back and forth between pedals before I take that on.

I probably will use crutches always, and I've accepted that likelihood. I nap every day, but so do my favorite creatures: my pets. Can't be all bad. Might be why they are so relaxed and happy all the time.

I'm not looking forward to another chemo treatment Friday, but I can do it. It's part of my job. I am ready to get back to living. A trip to TC must happen soon! When is that Cherry Festival, anyway? I'd enjoy a parade, and a Friday Night Live, but if I go, it will have to be on my Amigo, and I admit, I am embarassed to have my friends see me on it. I have to get over that. I see strong people accomplishing many things in wheelchairs, and I never ever think they should be ashamed. I admire those that really live their lives fully. I can navigate a little on crutches. I can go to restaurants if I am able to park closely, but anything beyond a small walk I need the Amigo.

That's what's happening for me at the moment.

Not Much

2006-06-13T18:33:00.000-04:00

new to report, I am continuing to have decreasing glucose numbers, nap a lot, and have fat ankles. Beautiful weather here, a lovely day, even if I didn't run barefoot through the park.

Pogo snuggied with me while I napped, Jill did my laundry, and I propped my feet, trying to get them higher than my heart....but that is not easy! I really can't do it, how could anyone? I'm not a gymnast, afterall.

I'll report more when there's more to report.... thanks for all your good thoughts.

Missed it by 11

2006-06-10T22:49:00.000-04:00

Today, I had 3 blood glucose tests that were normal. I was rooting and hoping for 4, but my bedtime check was 11 points over what is the lowest measure on my sliding scale. It means I only had to take insulin once! And that my body is doing its best to make the appropriate amount on its own. Is't it a miracle the way it works when things go as planned? I will be curious about tomorrow.

Friday Update

2006-06-08T22:14:00.000-04:00

For those who need a bit of info before the weekend, I'm doing well. My glucose numbers are about the same as they were earlier in the week, I want to see them all at normal in an instant, but oh well.

I'm cranky about my latest proof. It was NOT fixed. grrrrr

So I've notified them and have to see what they say. So no book this week, hopefully next.

I'll read this tomorrow and wonder what got into me.

2006-06-06T22:07:00.000-04:00

There's something that people say, when assessing there possessions, or assembling their gratitude. They say they are grateful for their health. I know they mean it when they say it, but they don't really know what they mean when they say it. They don't know that even when they say they don't take it for granted, they do take it for granted. They can't know. I didn't know. You don't know how healthy you were until you aren't. I didn't know. I have been healthy my entire life. I have never had a major illness or operation, never had to even think about taking medications other than thyroid meds. I've never been interested in alcohol or drugs, however mild. It just never occurred to me. I loved being strong and healthy. I loved exercising. I liked to bike and watch my thighs pump the pedals. I felt proud and strong to be so healthy. (oh oh tears) I learned new skills: hiking, kayaking. I learned to load the kayak on my Jeep and I learned to paddle (it's not like a canoe)
The fact that I was otherwise healthy has likely been something that has enabled me to weather this cancer as well as I have.

But something is making me sad. I hear people around me saying they are sick. They are weak, or they are old, or they can't do something.

Over the last 2 weeks, because of the combination of undergoing a recent chemo treatment, developing dangerously high glucose levels, adding insulin to my body to counteract that, having 50% strength in my entire body, having 75% lower strength in my legs, having found myself on several occasions literally being unable to rise to a standing position (not too tired, not just weak, but physically unable to do it) I was slammed with a new sledgehammer. I understood what not having your health really means.

I would trade anyone their difficulties. (though I don't wish mine on them) They vary, I"m sure, some more serious and debilitating than others, but unless your doctors have used the "T" word (which I don't allow to be used around me by the way, so don't even think of it) then you are better off than I am, and I would take yours on and deal with the consequences.

I have a new view and new attitude on what is sick, what is old, and on what is health. I used to love that I was youthful in appearance, and didn't want to get old, or be a grandma any time soon. I hear people complain about white hair or wrinkles, and now I WANT them, I find true beauty in lovely old women with beautiful wrinkles and lovely white hair. (I didn't say I was going to stop dyiing mine!) ha ha But I find beauty in longevity, particularly when the aging is handled with grace.

I'd love to age. To NOT age means less time. More time, more age, more life to enjoy. The key is to find what you need to find in order to enjoy what you have, be truly grateful for you health, and not to take for granted life, health, family, brothers, sisters, wives, husbands, sons, daughters, pets, trees...... you get the picture....

I see people not loving other people
I see people not realizing their health
I see people forgetting to hug goodbye
I see people telling themselves they aren't important

all things I've done myself
I just see them now

Forgive all the typos, I don't have energy to find or correct them.

I have had a very good day, feeling the best I have since chemo, and I anticipate it only getting better.

Life ain't easy, it's a job. I won't retire til they make me.

Pogo

2006-06-04T23:08:00.000-04:00

Pogo
Originally uploaded by lynnegr8t.

Coming Soon.

Be on the lookout for a Pogo. Let's keep our fingers crossed that the latest printing will have all the right colors. We are very close, now, and it will be revealed just what Pogo is.

Sunny Sunday

2006-06-04T18:41:00.000-04:00

Doing well. I've had 5 mornings in a row with normal glucose (that good old fast before you break it), and this morning, I extended that til the noontime, so I continue to make progress.

I'm still very weak, but feeling better, and hopefully the strength will come as the steroid works its way out, and the glucose numbers continue to regulate.

That's all the news from Lake Wobegone.

Pre-Weekend Blog

2006-06-02T14:40:00.000-04:00

I am improving each day, though still recovering from all changes plus chemo. My glucose levels, with insulin, are leveling, and was even in the normal range this morning! I still have a ways to go, and will see my doctor next week. It was suggested I will feel much better in a week after more of the steroid is eliminated from my body.

Send any good thoughts, well-wishes, love, prayers or whatever you use, psyhic energy, any and all positive thoughts my way! I'm soaking them up, and have just found the strength to have some for myself.

xxxooo

Holding together

2006-05-30T22:59:00.000-04:00

I had a checkup to evaluate the diabetes, and so far so good. I'm being weaned off steroids, so that complicates things, but he thought my glucose numbers were reasonable (though not good yet) for the situation, and I will be seen in another week.

I feel terrible. In the morning when the numbers are the lowest, I am fairly energetic, meaning I cal walk with crutches and move to a standing position fairly easily, but as the day wears on I become increasingly week, so that by this time of night, I am barely able to get the motion going to stand. It may sound like exaggeration, but believe me, it is not.

I can only assume that 1) chemo 2) diabetes 3) off steroid 4) on insulin 5) change in 1 other medication are to blame, and I hope that my body is strong enough to handle it. I wish I had someone here to monitor me, help me think (high glucose causes confusion and disorientation). Let's just say I'm happy when I wake up in the morning.

but now it's time to collapse into bed

(and look out the window at the fancy fireworks things that are around the Capitol Building. I think they made them special, for Memorial Day, to look like fireworks. Oh, wait, that's just Lynne looking at normal lights with her glasses off, imagining the big giant fireworks lights.) (Yep, I thought that.) But it seemed real. And logical. Til the next day.

I'm surving the weekend

2006-05-29T18:33:00.000-04:00

still feeling lousy, but managing I guess

Not any energy for blogging. I will when I can.

Life is like a bowl of...........

2006-05-28T07:59:00.000-04:00

We've heard life is like a bowl of cherries......
I'm thinking more like a bowl of spaghetti.... the long, thin kind

I'm still adjusting to:

Chemo treatment
Reduction of steroids quickly
New meds, off old meds

Learning to monitor my blood glucose
Giving myself insulin

and how all of these things make me feel (awful)

But the #s are in an 'ok' range for the time being

My plan: watch tv, nap, watch movies, nap

but no more ice cream, popsicles, pop or any of that stuff that I'd been craving (because my body was all out of whack)
and I don't even want any, the thought of them makes me sick

learning to balance foods, and eat in a healthy fashion
which is a pretty good plan for all, huh

2006-05-27T10:26:00.000-04:00

A little more info:

CT report was a good report, in that nothing new has shown up, and that is a major good thing!

However, I have developed Diabetes from taking the steroid. My blood glucose levels were extremely high, and I was instructed on testing my sugar and giving myself insulen. The plan is to get off the steroid and get back to normal, and that will be a processs over the next days and weeks.

I'm a little out of it, my body is trying to adjust, and I'm taking it easy.

Send me lots of 'good, good, good vibrations". To quote the Beach Boys.

for those waiting with bated breath

2006-05-26T22:47:00.000-04:00

does that mean fishy?

the CT showed no progression of disease, so I'll continue the current drug

YAY!!!

have other issues to deal with, which I'll tell you about tomorrow

quite an eventful day

In my dreams

2006-05-26T07:15:00.000-04:00

It's funny, I composed a brilliant blog post while sleeping last night. I think I might even have proclaimed it outloud in my sleep. I know the dog was sitting up and listening to me intently. I think he too, thought it was brillant. Of course he thinks everything I say or do is brillant. I know he listens to every word I say.

Too bad, I wonder what I said.

Confession

2006-05-25T06:26:00.000-04:00

Ok, some of you alrealdy know, but I've watched every single American Idol episode this season. From the grueling (and most fun) auditions. It is always amazing that people who try out, and are absolutely horrible, do not know that they are horrible. In some cases, I think family members should work harder at convincing them they are not good. But, that's what makes good TV. They want the bad ones, because it is fun. All the comments by the judges, they are encouraged to be honest (Randy), kind (Paula) and mean and honest (Simon). It's part of the game.

I'm going on and on like this is important in the larger scheme of things. It isn't. But it's fun. And fun is good. Laughter is crucial. I was thinking of renting some funny movies, I'm asking for a list of favorites. Let me know what makes you laugh out loud, that's what I'm looking for. I like old movies, new movies, obscure movies, unknown movies..... just make'em funny. Trouble is, it isn't fun watching alone.

So, the question is now, is what am I going to do on Tuesday and Wednesday nights in stead of Am Idol? I guess I'll give "So You Think You Can Dance" a try. Other problem is "Top Chef" also ended. What is coming next, anyone know? Karen? I may be stuck with the reruns of last year's annoying show "Blow Out" with that Jonathan hair-cutter guy. He's a trip. A trip of his own. I didn't get into the invention show at all. I don't really like the 'how-to" cooking shows. Especiallly not those high tension competition ones. I don't mind Rachel Ray sometimes, but she is so cute it's annoying. I can't stand the blond who makes stuff out of Twinkies and mixes, and I am soooooooo anoyed with that Giada chick!!! Oh my gosh, shut your stupid lips over those stupid grinning teeth. I guess I like watching Lydia the best, she teaches how to make what look like delicious traditional Italian dishes (eye-talian, Karen), and I always wish I could taste them.

Not that big of a confession, but it's all you're getting.

Observe ME

2006-05-23T16:18:00.000-04:00

I should add more observations about myself, that pertains to the blog a couple weeks back about family.

I am the biggest screwup of all, you know. i've made enough mistakes for all of us combined. I should perhaps have been harsher on myself. I apologize if I came across as a know-it-all, or made adsumptions or observations that offended anyone.

sigh

I love my sisters and brother. I love my family. I am working on loving myself. That's the hard one. I can't forgive myself, and now I've added another thing to work on. Great. I'm sick of 'lessons'. I've done my fair share of working on things. I need a break.

The Full Article, in case the FreePress link doesn't work.

2006-05-21T10:58:00.000-04:00

Article:

At least 12 people died in 24 hours Thursday and Friday in Wayne County from a potent prescription drug mixed with heroin and cocaine, said officials who expect more deaths over the weekend.
Officials issued an alert late Friday, saying they feared drug dealers were adding fentanyl, a powerful drug prescribed to cancer patients, to heroin and cocaine to boost the high for their customers. The victims ranged in age from 20 to 45 and were found in crack houses and on the streets in Detroit, Dearborn Heights, Lincoln Park, Redford and Westland. Eight deaths were reported Friday and four on Thursday, mostly from a heroin-fentanyl mix. Names of victims were not released. Hospitals and authorities in Oakland and Macomb counties reported no similar deaths.
Fentanyl is supposed to be used only by those suffering from around-the-clock pain. If consumed in large amounts, it can cause breathing problems, possibly fatal, according to the U.S. Food and Drug Administration.
Like heroin, fentanyl can act as a strong sedative, giving users a drowsy high. But it's potentially more dangerous. Last year, the FDA issued a public warning about inappropriate use of the prescription drug.
From September through March, the Wayne County Medical Examiner's Office confirmed 106 drug deaths, the majority linked to combinations of fentanyl and heroin. But the increase in deaths Thursday and Friday prompted county and state officials to announce a health alert Friday.
Officials from the U.S. Centers for Disease Control and Prevention (CDC) in Atlanta are headed to Wayne County on Monday to assess the problem, said Wayne County Executive Robert Ficano.
"We are not trying to have panic, but this is a very serious public health issue," Ficano said Friday. "The dramatic spike within the past 24 hours shows that there's a very lethal amount that is being distributed on the street at this very moment."
T.J. Bucholz, spokesman for the state Department of Community Health, said the CDC is interested in Detroit's cases because of similar events reported in other cities.
The CDC is particularly interested in whether the Detroit drugs may have come from Chicago, where there have been reports of fentanyl-laced heroin causing overdoses and death, Bucholz said.
Similar outbreaks of deaths linked to mixtures of fentanyl and heroin were reported last weekend in the Philadelphia area.
Last weekend, 22 people went to Chicago hospitals after overdosing on the fentanyl-heroin mix.
Two CDC officials said Friday they were unaware the agency was sending investigators to Detroit. The CDC typically does not investigate Fentanyl-related deaths.
"We have no information about CDC being asked to investigate," said agency spokeswoman Bernadette Burden. Oakland County Medical Examiner Ljubisa Dragovic called the Wayne County deaths "significant" and said they could indicate people were getting their drugs from the same source.
"That calls for looking at the location" of the victims, "whether they were from the same neighborhood or dope house to see if there is any geographic pattern. Then you would have to focus on the suppliers."
Ficano and Chief Wayne County Medical Examiner Carl Schmidt said there is a good chance that street dealers don't know what fatal mixture lies in the drug packages they are selling. Schmidt said victims are injecting or snorting the drugs.
Area hospitals, law enforcement agencies and EMS networks have been notified of the drug crisis.
"Drug use does dramatically go up on the weekends, both recreational and those of addiction," Ficano said. "From what I understand it's almost an instantaneous death when you take it with the combination."
Ficano said he's also concerned that people who injected drugs could be lying dead, undiscovered, in crack houses or drug dens. Michele Reid, Wayne County's medical director of mental health services, said there is treatment for people who overdose on the drug if they get to an emergency room immediately.
Those who take the drug mixture may notice extreme euphoria followed by difficulty walking, or a deep slumber accompanied by heavy snoring, she said.
Major dealers may be cutting the drugs with fentanyl to give their product a better boost.
"It's competitive," Ficano said. "They can brag that they have the substance that gives you a better high. It's capitalism."
Fentanyl, first made in Belgium in the late 1950s, can be about 80 times more powerful than morphine, according to the U.S. Drug Enforcement Administration.
Today the potent prescription painkiller is dispensed in the form of a patch, say federal officials.
In 2003, the last year for available U.S. figures, there were 418 deaths in Wayne, Macomb and Oakland counties from opiates, a drug category that includes Fentanyl, other prescription drugs like OxyContin and heroin. Out of those 418 deaths, 72 were from heroin. One variation of fentanyl is sometimes known as China White, according to medical experts.
A national health official said the number of deaths in Detroit is high.
"That's a lot," said Leah Young, spokeswoman for the Substance Abuse and Mental Health Services Administration, part of the U.S. Department of Health and Human Services.

Additional Warning Info from FreePress Article
(this stuff I didn't know when I lay in my bed feeling as if my breathing might stop)

BY BEN SCHMITT, KIM NORRIS and NIRAJ WARIKOO
FREE PRESS STAFF WRITERS
Related links:
• More information: http://www.usdoj.gov/ dea/concern/ fentanyl.html
Fentanyl facts
What it is: The painkiller can be about 80 times more powerful than morphine.

Legal use: It's a prescription drug often used for chronic pain, especially for cancer patients.

Illegal use: It is mixed with heroin, or with heroin and cocaine.

If you develop adverse effects: Call your doctor or emergency officials. Report problems with fentanyl to the Food and Drug Administration at 301-443-1240, 24 hours a day. Or call 800-332-1088.

Signs of an overdose: Labored or shallow breathing, extreme sleepiness or sedation, difficulty walking or talking, and feeling faint, dizzy and confused.

Niraj Warikoo
FENTANYL
(Oral transmucosal fentanyl citrate)

• A product of Cephalon Inc. (145 Brandywine Parkway, West Chester, PA 19380 | 800-896-5855)

• Sold as Actiq® pronounced ac (like "back") tek (like "Beck")

• (from the 'warning label' section of the Actiq® label)

Actiq® is indicated only for the management of break-through cancer pain in patients with malignancies who are already receiving and who are tolerant to opioid therapy for their underlying persistent cancer pain.

Patents considered opioid tolerant are those who are taking at least 60 mg morphine/day, 50 mcg transdermal fentanyl/hour, or an equianalgesic dose of another opioid for a week or longer.

Because life-threatening hypoventilation could occur at any dose in patients not taking chronic opiates, Actiq is contraindicated in the management of acute or postoperative pain. This product must not be used in opioid non-tolerant patients.

Actiq is intended to be used only in the care of cancer patients and only by oncologists and pain specialists who are knowledgeable of and skilled in the use of Schedule II opioids to treat cancer pain.

Patients and their caregivers must be instructed that Actiq contains a medicine in an amount which can be fatal to a child. Patients and their caregivers must be instructed to keep all units out of the reach of children and to discard opened units properly.

SOURCE: Physicians' Desk Reference, 59th edition, 2005 (page 1122)

Detroit FreePress

2006-05-21T04:55:00.000-04:00

http://www.freep.com/apps/pbcs.dll/article?AID=/20060520/NEWS02/605200316/1001/NEWS

WELL

Fentynl is the patch that I had several months ago
that made me so horribly sick and vomit. I got it from
my oncologist, and it is a 3 day patch that is worn for
severe pain. I put it on while riding home from UM
as I was then having a great deal of difficulty with leg and
hip pain.

By that night I was so sick I called the oncologist on
call and asked if I should take it off, and she
recommended not to because my body was adjusting to
it, she said, and often people feel nauseated from it.
I felt better if I lay down, and I recall and feeling as if my
respiration was slowing and I was breathing very
shallowly, but I went bed to sleep and wait it out.
I seriously recall wondering if I'd stop
breathing, as I'd never experienced that before but I
STUPIDLY left it on.

(a good example of when we need to be our own advocate,
and go with our instinct about things, ignore the medical
community, and take matters into our own hands. It is just
such a difficult thing to do because we are taught to
trust they know what to do, and we are not trained in
their profession. As much as I've learned, I obviously
still need to question and question even when they are
annoyed by it)

It was in the morning that Jill came over and I was
vomiting and I ripped that thing off, and of course
things got better.

Good think I didn't mix it with my heroin. (in case
my blog is being monitored, that is just a joke) I
make sure I let all medical people know I'm allergic
to that drug. So none-a-u-all try to slip me any of
that.

Home again

2006-05-20T17:36:00.000-04:00

home again, jiggity job

back from A2 and the CT scan, it was uneventful, no results, of course, and the drive was enjoyable on this beautiful sunny day.

Now it's time to prop my feet up to hopefully alleviate some of the ankle swelling, and it is hard to prop your feet above your heart, but I'll try.

I think chocolate ice cream might help.

Early

2006-05-20T06:32:00.000-04:00

Saturday morning. It's COLD outside. Geez. 37ˆ, come on!

I'm sipping coffee, having had peanut butter/nutella toast. Just stretching and waking up. I really do have to do my stretches, I've been a little neglectful and it makes a huge difference in how I feel and how I maneuver.

Pogo is waiting to go out, I guess I have to take him. He's being patient, but a dog can only hold it so long!

I guess that's what I need to do. Coat. Gloves. Geez. 37°.

Definitely

2006-05-16T19:23:00.000-04:00

Feeling better. Whew! I'm doing much better today, not quite all better, but the drugs are finally working.

My observations of the amateur kind....no offense intended.

2006-05-16T06:46:00.000-04:00

It is interesting to think about how alike and yet how different siblings can be, and are. My family of 5 total children, were all approximately 3 years apart, all born to the same parents, living essentially the same life, experiencing essentially the same things, and yet we are so different, and yet so the same.

It speaks to the nature vs nurture question, and shows how much personality comes into play in shaping an individual. Of course, this is no scientific experiment, with no control group, just simple observation by me.... of us.

Judy, the oldest daughter, was always a sweet-natured little girl, very shy, very loving, very agreeable. This was her personality. She remained the same way (though, yes, she could have a temper) throughout her life. She was perhaps too agreeable, and didn't stick up for herself enough, though this is a legacy of the 40s and 50s I think, and probably continues today to a large degree, in which girsl and women are taught (by men) to defer to them, don't make waves, go with the flow.
So, being a shy, agreeable person to begin with made her even more agreeable. If that makes any sense.

Carolyn, the second daughter, has a personality that is a bit feistier, and she was a more outgoing, mind-of-her-own kind of girl, and her determination and strength has carried her through any challenges she's come across. She is independent, strong, intelligent (as we all are), and has guts. Oddly, though, all of us kids have a degree of shyness and low-self esteem, and I don't think she realizes how strong or wonderful she is, and none of us really grasp our own value.

We are all pretty attractive, we can say that now, looking back on photos of us when we were young, and remark that we used to think we were unattractive, and now, through the perspective of aging, we can see that we were indeed quite good looking, and we therefore did not see what was really there, but rather, we were seeing what we THOUGHT was the truth. Our parents were very attractive, and of course they had very cute kids!

Marsha, the third daughter, is also shy, rather more quiet than I am, but not as quiet as Judy was, but yet has the family shy gene. I always viewed Marsha as the pretty one. She is pretty, and was pretty, but as I said, never felt so. She is artistic, (actually we all are), but she probably exhibited her talent at the youngest age. She is a very loving, gentle person, and has the love of animals we all have, and a particular love of real breathing animals, and toy, collectible beautiful bears, animals and dolls. There is a comfort, I think, for most people, with the cuddliness of childhood stuffed toys, and the feeling that gives us of being cared for, of snuggling into bed at night with a soft toy, and using the imagination of a little child to believe those friends were/are real and love us back.

Me, the fourth daughter. My dad confessed to me that when I was born he said: "great, another damn girl". Not a nice thing to tell said girl, but he said the reason he told me is because as I grew into a toddler he regretted the remark, and said I was the cutest girl he'd ever seen. I still haven't forgotten that, though, that I would be a disappointment to a dad who dreamed of a boy. My personality is more of a combination of my sisters. I can be shy, I don't have the greatest self-esteem, and I definitely did not think I was attractive or valuable, and did not choose wisely when I was making life decisions about marriage and career. But I am strong, and I am feisty, and I have learned I have courage. I am artistic, as well, as you know, and can't imagine not creating something of somekind all the time. Books, paintings, pies. I am a spiritual thinker, being able to see the value in many beliefs and faiths, and tend to believe that there is a universal source of intelligence and energy, overseeing the universe/galaxies/infinities...whatever it is..... and that there were many men and women of intelligence and belief whose thoughts have value, have been many prophets from many places around the world, and all have similar ideals and lessons for us. My sisters have their views, and their beliefs, and if they wish to share, they may. It's not really important exactly what you believe, really, I just think that you listen, read, and then take in what makes sense, and what provides comfort and help when it is needed. Same for politics, I guess.

Eddie, the last kid, and finally the boy! He's got the shy gene, is extreeeemely intelligent, has lots and lots of interests, abilities, skills, talents, a wealth of knowledge of music history (American mostly, I guess, not sure if he's much into classical stuff), but if you want to know about jazz musicians of the 40s all you need to do is ask...he'll know the answer and probably have the actual music to play for you. He's generous and sweet, and is a fabulous dad, a loving husband, and a great brother to me.

All of us love old houses, old things, and especially enjoy living with/in them. We all enjoy animals, though some more than others, and some are cat people and some are dog people, and some love both.

It's just interesting, and those are some observations. Please, take no offense if I said anything that might have embarassed you, and add anything you wish, expound on, or disagree with the observations. Especially feel free to write about me...I'm curious as to what my siblings see in me.

Bragging Rights

2006-05-15T21:13:00.000-04:00

My daughter, Jill, the future horse doc, maintained a 3.0 gradepoint average for her first year in vet school, while carrying..

get this....23 credits.

Ain't nothin' wrong with that!!

(I have a right to brag, I'm her mom)

Maybe

2006-05-15T20:27:00.000-04:00

feeling a tiny bit better today. I'm going to check in with my medical team tomorrow and make sure nothing else is going on, I'll keep you posted.

sorry

2006-05-14T18:02:00.000-04:00

too sick to blog/email/telephone

antibiotics don't seem to be kicking in yet

Marsha, I know you called, but I don't have the energy to call you back

nap timie

under the weather

2006-05-13T23:03:00.000-04:00

The other day I was feeling kinda sick, and finally realized my sinus infection I've been battling was probably coming back, and on Friday I became so sick, sicker than in recent memory. Got my home nurse-lady to contact my doctor, who phoned in a script for delivery. Unfortunately pharmacy and insurance problems prevented that, but the pharmacy didn't notify me my meds were not on the way, so i called them, found out there was aproblem, got nurse-lady to call doc, to call pharm, and fortunately Julie-to-the Rescue was dropping by (wonderful neice who was visiting) and we raced to pharm just before close to get substitute antibiotics that the insurance WOULD pay for, then went on to dinner, and then off to bed for me.

Julie-to-the-Rescue had an all-day class here in Lansing, I slept all morning, then went to lunch with 4 of my 6 kids (you may need to do some addition) and was very sick, very weak, (but yet hungry), and could truly, barely walk, or stand up from dinner table. We went to Jill's, I napped. We came home, I chatted a while, and then napped. (eating once more in between) Got up at 8pm, ate again, watched some tv, and now feel as if I can barely keep my eyes open.

Of course, being sick, taking morphine and more morphine makes me weak, tired and sleepy, and I just hope that by tomorrow the newest wash of antibiotics will kill the little bacteriussss (what is plural, Jill?) that are screwing up my sinuses. I also had to rid my house of cut flowers, that, though beautiful, were wreaking havoc with my allergies/sinus problems. I just have to bear not having them in the house again, which is sad, but necessary.

I feel as if I'm rambling, and I probalby am, but it feels cathartic and my fingers are doing it all by themselves.

I have another Mother's Day celebration tomorrow at Jill's. She mentiond Chicken Satay, which sounds very yummy.
It will be late afternoon, so if I rest all day, I can do it.

And that's the way it is, today, Saturday, May 13, 2006. Goodnight and Sleep Tight.
Don't let the bed bugs bite.

cruddy day

2006-05-10T19:58:00.000-04:00

Nothing bad happened really, not medically, not physicallly.....just having my typical financial issues trying to make ends meet and screwing up and forgetting to write in my car insurance in my bank book, and then having Ebay debit my account unexpectedly, and having to deal with the fact that I'm always broke, and it makes me feel like a failure.

I shouldn't have to deal with this too. I have enough to deal with just dealing with cancer and the physical problems, the doctors, hospitals, and all the things that are so overwhelming anyway.

So that is my cruddy day.

Fat Ankles

2006-05-08T22:27:00.000-04:00

That's the status of the evening.

My feet are swollen and I am fat. I almost don't recognize myself, but it's the steroids at work. A tradeoff, and I'm dealing with it just fine. I have to set my priorities and feeling better is more important than looking better, and besides, what's wrong with chubby? I like chubby people...I like thin people.... I like people who are good people and their weight is not important. So why should I care if the chubby person is me? I guess I don't. I have an excuse to be chubby, and it ain't all that bad. :)

Today was a very beautiful day. The air was so warm and the breeze was wonderful, and I enjoyed it as much as I could. Pogo and i took several nice "walks" (he walks, I ride) and he got to sniff all the smells he wanted, and he saw squirrels, ducks, birds, bikes, noisy lawn mowers, and cuckoo people. (though no one did anything particularly cuckoo today)

so the words of the day, are as the title says:

fat ankles

Good day

2006-05-06T19:54:00.000-04:00

Post treatment day went fine, I'm tired, but naps take care of that! I did miss out on going to Josh's for a celebration, but the family understands. I'm laying low this weekend, in hopes of making a trip to Saginaw and Bay City this week. I'm anxious to see my brother and sisters and their families. (Craig? up for it?)

Jill had bad news this weekend, and her sweet dog Ari and I share a battle. He's tough, though, and he and I are going to be buddies and tough it out together. I know he'll respond well to his treatment for his lymphoma and he is happy and fearless and I will learn from him.

I'm listening to Prairie Home Companion, and that's always soothing. Nice soothing Garrison voice. There's some real hillbilly song on right now, and the basic sound of that type of real music is fascinating. Imagining how folks sat together at night in their homes and entertained with their voices and instruments. I remember my Grandma Eathel (whose birthday it is today, by the way,having been born in 1886, 120 years ago!!....anyway...she said "Pa' played the fiddle. Just like Little House on the Prairie. So sweet.

That's all for tonight, I'm feeling alittle drowsy from a nap, and sentimental as well. Not a bad feeling all in all.

xxxooo

to everyone

treatment day

2006-05-05T19:40:00.000-04:00

went fine, I'm home, exhausted and ready to punch the buttons on the remote control

2006-05-05T08:39:00.000-04:00

I needen't have worried, I slept very well, and I'm ready to tackle the day. Pogo and I have already been out for his morning walk, I'm readying myself mentally and physically for a long day, but I truly feel well and energetic and ready to go.

It's going to be a beautiful, sunny spring day, and I noticed that not only are the crabapple trees in full bloom and full scent, the lilacs, too, are blooming. I forget how much earlier spring comes to southern Michigan as opposed to northern Michigan.

I hope to get to Traverse City in a couple weeks, and I'll see spring springing there when I do. I miss my adopted hometown, and I am looking forward to some views of he Bay.

http://sleepingbeardunes.com/photos.php

sleep

2006-05-04T23:14:00.000-04:00

Had some trouble sleeping last night, and after that happens, I'm afraid to go to bed in case it happens again. (at least I haven't had any nightmares lately!!!) (like I did a few weeks ago)

So here I sit, very tired, knowing I have a big day of travel and treatment tomorrow, and I am putting off going to bed.

well.....here goes....................................

Back in Feisty mode

2006-05-04T20:09:00.000-04:00

I'm finding myself returning to a feisty determined mode of thinking, and probably having less pain, and feeling more energetic is part of the reason why I am.

I am starting my day with a good meditation, some simple stretches and generally filling my head with 'go get em' ideas, and that must be a good thing.

I'm ornery at times, but I think that's a good thing. Ornery just means I'm fighting mad, and fighting mad is fighting mode.

The people in my building are driving me nuts. As you may or may not know, it's a 10 story building with a lot of weirdos, and I just can't stand them. Some are nutty, literally, I think there are schizophrenic people here, they look like bag ladies, and at any given time I may enter the elevator to find 5 or 6 people talking, gyrating, pushing grocery carts, wheeling other carts or carriers of some kind, and there's literallly one lady who spins and weaves and speaks gibberish. I also had to endure standing next to 2 guys talking loudly about how they would shoot the cops first if they cops tried to shoot them. A more humorous event last Saturday, on a beautiful sunny day, was witnessing several people singing....accompanyied by guitar and harmonia...... singing...... Christmas Carols. Yep, I'm not kidding.

What I have had to come to. Living in f***ing public housing, after having worked my ass off all my life, and having the misfortune to lose everything due to the diagnosis of cancer.

My specific apartment is very nice. The building itself is nice. It is kept very clean, and the grounds are beautiful and immaculate. It's just the weirdos. (me included?) I am locked in here til October, and there is a nicer place nearer to Jill's house that I can move into...and the other day I called to check on my status there, because shortly after I moved here I was put on a hold list there....well, guess what....they have lost all record of my applying there, so I have to start all over again. After October I can move any time I want to. I just wish I could move to a normal apartment where you have your own entrance and exit, you are subjected to the comings and goings of 10 floors of people milling about.... people standing, sitting, smoking, loitering in front of the building watching your every move, commenting on your comings and goings, and generally staring at you. There are a handful of ok people, but truly, for the most part, they are weird, weird, weird.

WHY did this have to happen???? UGHHHHH!!!!!!

(here the ornery coming out?)

ok, so tomorrow is Alimta day, and I'm up for it.
right.

I have an idea

2006-04-30T09:03:00.000-04:00

In my dealings with people and the way they seem to respond to a person with disabilities...

I'm going to experiment. I'm going to start talking to people, look them in the eye, and be friendly and try a different approach. It occurred to me that I'm getting what I am putting out, and this may be something I have some control over.

I'm acting ashamed (which I should not be) and lowering my eyes and not expressing that I AM a capable person.

I'll start today, I'll let you know how it goes.

a book and other stuff

2006-04-28T22:56:00.000-04:00

A book was recently shared with me. The name of it is The Etiquette of Illness (or something like that). It's to help people know what to say when they are talking to someone with an illness, whether life-threatening or chronic.

In this book it addresses that thing I have been puzzled by: my need to soothe others.

Finally I read that others deal with this, and though people vary in the way they handle things, it seems that the reason the person with the diagnosis feels this need is when people express their concerns in a way something like this:

"Oh my God, that's terrible" "Oh, I am so upset that you are having to deal with this" "Oh no" "How horrible" "you must be so upset'

it's the person's upset that causes the need in me to comfort them. They are just honestly concerned, and mean nothing but good, and have nothing but love, and I do understand that. Trouble is, I don't have much energy to comfort others, since I have to spend it on comforting myself.

The more calming way for someone to talk about their upset (and not upset me) is to say something like this:

"I'm sorry you have to deal with this" (leave out the oh my gods and oh nos)
"Let me buy you a cup of coffee"
"I'm here to talk if you need me"
"I'm willing to help"
"I can do (insert helpful thing you may want to do... ) (even the simplest thing is helpful)

or

just do something
the simplest act is most gratefully appreciated, it does not have to be anything big, in fact, the bigger things are sometimes harder to accept

The best way I can describe it is to be calm and loving and just say you are there.

Also, if you do spend time with the diagnosed person, it's ok to talk about it, and it's ok to acknowledge that there may be limitations or that the person may not be feeling 100%. If you have the expectation that we have to all pretend everthing is still all A-ok, then that person has to pretend with some people that everything is ok when it's really not.. Kinda hard sometimes. It's ok that I use a crutch, it's ok that I use a cane, and it's ok if you look at me, and it's ok if you talk about it, and it's best if you recognize that I need to, and not pretend I can walk along as fast as always, or walk across large parking lots, or climb stairs, or stand in lines...

I really can't, and to try, in order not to upset you, sometimes I try to do it all and it is just too difficult.

(by the way, I am not talking to anyone in particular, just a lot of small things that have happened over the last several months)

It's a learning experience for all of us, and I certainly hold no bad feelings for anyone!! We're learing together, I guess.s

Ok, I have bad feelings for the stupid lady today at the library who would NOT give an inch in the aisle as we both searched for DVDs to take home. I am limited in my ability to get into the aisle, reach the top, etc...and she just simple would not move, and was one of those annoying able-bodied people who refuse to ackowledge the existence of an person on a mobility scooter, (you know, a defective person) It's so amazing how many hard-hearted people there are. By the way, I didn't back up or give in to her, I maintained my stay in the aisle and proceeded to look for my movies, and then moved on appropriately. I did struggle with doing so, though, and felt ashamed and wanted to give in to her.

As I said, a learning experience.

OK

2006-04-27T21:30:00.000-04:00

you don't have to rub my feet

Hydascan

2006-04-27T21:29:00.000-04:00

Had the gallbladder test tonight, it's a long one...an hour and a half long. Bad th ing about it was lying flat on a table, which causes a lot of hip pain, and being forced to stay off the pain meds for the day so the test could be performed. But it's done, and I'll have results soon, I guess.

who knows what to think...

I'll just wait and see.

As for right now, I'm tired, tired, tired, and am going to go watch "The Office" and snooze on the couch.

Anybody want to come make me a banana split and rub my feet?

I should probably

2006-04-24T20:01:00.000-04:00

clarify.....that when I say I'm doing "great", sometimes for me that just means I'm having a relatively pain-free day, have a fair amount of mobility, and feel fairly upbeat and hopeful.

I am definitely not 100%, and sometimes I think I may seem to make things seem better than they are so people don't freak out.

I am not my old self, and likely never will be. (unless that magic wand thing works)

I have much less stamina, I can walk around my apartment, but cannot walk down the outer hallway without crutches or cane, and walk very, very slowly. I usually use my Amigo to go out, even though I can't take it on my car (wish I COULD!!), I ride it downstairs, park it in the lobby and take the key, then crutch to my car. If I'm parked close, it isn't too bad, but I have to sit in my car and recooperate from the effort before I can drive anywhere.

I can now go to a store, and walk around for about 15 minutes, but that's about it.

Today I went to the doctor, and just walking from the parking lot, into the building down some hallways, up an elevator, and then waiting in the waiting room was exhausting.

My friends and family would love for me to visit soon, and I definitely will and want to, but the thought of the drive is daunting, so I will probably have to wait til someone can go with me.

I've perhaps been painting a too-rosey picture, because the good pain relief I've had has been so wonderful, I have expressed how good I feel (and that does feel good!) but I am not the old Lynne.

I'd love to visit Traverse City, I always have a place to stay, but almost anywhere I would go would mean climbing stairs, and that is something I can do only on a limited basis, and certainly could not do several times a day. Nor could I really go downtown or walk around, or do anything that would require much walking. I am very limted in what I can do. It's discouraging, and sad, because I can't th ink of anything more wonderful than when the weather is warmer this summer, to travel to TC and sit on a beach and soak up sun.

nice.

doing well

2006-04-22T09:52:00.000-04:00

just a quck update, I'm feeling great, and have had no further 'episodes' of that weird tummy thing

so I may just get out and enjoy the day, take Pogo for some walks, go to the bookstore, and generally enjoy my day

Let's put it all in perspective.....

2006-04-21T07:51:00.000-04:00

What it costs:

Here is a financial breakdown of my most recent University of Michigan Cancer Center chemo treatment:

First, I get 2 tablets of an anti-nausea drug: $ 81.08

Next I get a tiny little plastic bag with Zometa,
which is a bone-strengthening drug: 2040.68

The main drug I'm receiving now is Alimta,
again, a tiny bag of solution, about 3 oz I'd guess 9,898.98

After each bag drips, they flush out the IV with a
small bag of saline solution...ya know...salt water 82.00

There is a setup fee for the infusion service 240.00
Chemo supplies; needles, bandaids, cottonballs 249.00
more supplies (must be special cottonballs) 81.00
pump to drip the stuff (oh, but it's called the "Gold" pump) 71.00
Labs to make sure I'm healthy enough to recive these goodies 90.00
more labs 47.00

TOTAL $ 12,880.74

That's ONE treatment, I go every 3 weeks.

Thank goodness for insurance.

I deserve it.

Pretty good day

2006-04-20T23:14:00.000-04:00

hanging in here, and had a good day

Never A Dull Moment

2006-04-19T08:44:00.000-04:00

I spent yesterday in the Lansing Sparrow Hospital ER. Had severe abdominal/chest/rib pain early in the day. I was waiting for Josh to arrive for his usual day of help, and the pain was getting worse and I got really scared. I tried reaching Jill and Jonathan, (who were at school and work) and just decided waiting for someone to get here could be dangerous, so I just called 911 for myself. You know I had to feel it was serious for me to do that.

My blood pressure was high from the pain, and they transported me by ambulance to the ER. They were (and I was) concerned about heart problems, or a possible blood clot to the lung. As you may know cancer patients are much more likely to develop blood clots than the average person, so this was a serious, legitimate concern on my part (and on theirs)
I had xrays, ultrasounds, ekg, and bloodwork. They ruled out the most serious things (no clot, no heart problems), so they also checked my gallbladder and liver. No stones, but it's somewhat enlarged, and the liver enzymes were slightly elevated (which the Alimta I receive can cause)...so they sent me home, and I'll just do some followup. The pain resolved very quickly, and it may have been just stomach irritation from the medications I take (one of the negative side-affects my doctor worries about in taking the steroid)

so...

home, feeling fine, and taking it easy

Ahhhhh

2006-04-16T21:21:00.000-04:00

nice day, very tired tonight

time for an early bedtime (very early)

goodnight everyone

Great day

2006-04-15T21:04:00.000-04:00

I had my 2nd Alimta treatment on Friday. It was uneventful. I am going to stay on the higher steroid dose for now, as it is helping tremendously with the pain and swelling. I'm off the strong pain meds, (narcotics) and my swelling is gone and I can walk around my apartmetn unaided, and can walk more freely with a cane and go out and do things! I feel like a real, alive, actual person this way. My doctor is rather reluctant to have me continue the steroid, and can't figure out why it helps so much, but I have to be able to do more than sit in a chair, which is all I've been doing lately.

Today it was a gorgeous spring day, and I went with Jill and her friend Corey and I watched them as they rode Jill's horse Pito. Jill loves her gray horsie and the summer-like weather was just perfect for it. It's a major stress-reliever for her when she takes some brief time off from studying. She only has a few more weeks of classes and her first year of vet school is done.

Josh went with me to my appointment and treatment. He is a sweetheart. He is so patient and loving and kind, and I appreciate him and his help so much on those days. I personally hate the appt day, it is so stressful, and my mood is low and my blood pressure high. It's just the cost of chemo. I'm grateful to be receiving the drug, and hopefully it is doing it's thing. I will have a CT scan after the third treatment cycle (in May sometime) to see if it's working. As for now, I feel it is, because I feel good, especially now that the pain is nearly gone and I am getting about MUCH easier!

Jonathan and Jen are having us over for an Easter Brunch tomorrow. I'm excited about that and very much looking forward to the day with my kids. Ham, cheesy potatoes, pies, brie and fruit, a breakfast casserole, and who knows what other goodies.
And my kids. My 6 kids. Because their wives and husband are like my own kids, I love them all so much.

I feel very fortunate right this minute.

no more

2006-04-13T15:51:00.000-04:00

As I said to Julie yesterday....

Can I STOP having cancer now? Pretty please? I don't want it anymore.

Flawed

2006-04-11T21:57:00.000-04:00

I'll describe myself as a disabled person, because at the moment, I am.

I am not able to walk freely, I use crutches, and my Amigo to get around.

I'm learning that many people in the general population really don't like people who are not perfect.

There are 3 kinds of people.

First: those who treat disabled people normally
Second: those who go overboard in trying to be overly nice to a disabled person
Third: those who find disabled people disturbing

I don't really want to delve into WHY people feel the way they do, just that they do.

The most frustrating for me are the third type. They are impatient, and often very rude. Not just ignore you, but seem to go out of their way to be intentionally rude, or at the very least to not try to hide they disgust and impatience with you.

An incident that made this clear happened about a week ago. I was slowing someone down because I move about more slowly than the average person, and this woman was trying to enter a door behind me. She had a look of disgust on her face, and flounced around and did everything she could to find a way around me, and seemed not to care that she was behaving badly.

Other similar things have happened many times in public places, where the person seems to go out of their way to push forward in front of you, cut you off, and just generally make sure "we" know they are the non-disabled, and therefore better, and more deserved of being their first.

Yeah, yeah, it's about their fear, blah blah blah

I wonder how I acted in the past. I recall trying to make sure I treated people the same as I would if they were not disabled. I wonder if I actually did. I hope so.

great weekend

2006-04-10T09:29:00.000-04:00

I had a really nice weekend, with lots of visitors. Family and friends all over the place! I loved it! First Marsha, Chirssy, and Carolyn, and then a great friend from Midland visited. I felt like a queen!

It's still so surprising to me ....

and this will sounds weird and sick...

that people LIKE me. It still surprises me that I am loved and cared for. It just feels weird, because I never really KNEW how many friends I had.

At one point on Saturday, I had about 7 people here all at once just hanging out and laughing and talking. I loved it!

I'm really very fortunate. And on top of it I have my silly pets who add entertainment to the mix.

a good weekend

The Dog Whisperer

2006-04-07T21:46:00.000-04:00

My sisters, Marsha and Carolyn are visiting. Marsha recently moved from Houston back to Michigan, and this is the first time i've seen her since she arrived a few weeks ago. She came here and promptly absorbed all the Michigan germs she had been without for a lot of years, and she had to experience a some virus'es or something-er-other. But she's better now, and she feels comfortable visiting me and not worrying so much about bringing some germ to me (in my compromised immune state of being in chemo and having a lowered white count and having shingles)

She and her daughter Christina, as well as Carolyn, entertained Pogo (and he them) this afternoon. Pogo jumped and licked and kissed and sat on laps...etc.

Carolyn was kind enough to take Pogo out for his walk, and used the Amigo to do so. Pogo surprised her by knowing the pathways around the building and grounds, and she just followed along and made the turns as he lead her to. I think he pulled a fast one on her, though, because from her description it sounds like he took her farther and different ways than we usually go in one walk. He was thinking "I've got a sucker on the end of this leash"...."lets go this way, and this way, and this way, and kind of put all his walks into one big walk. Stinker. Isn't that hilarious?

He's good, though, jumps up on your lap to ride the Amigo out of the building, then hops down and runs his run and sniffs his sniffs and does his thing. He even seems to know when you stop to pick up the poo, and have it in that little bag, he knows he has to go past the trash can and he slows down and lets you deposit the bag into the proper receptical. He probably thinks he's really got US trained. Wow, I poop, they pick up. Good girl. Good girl.

He's been nervous since we moved here, and since I became disabled. His confidence, in direct proportion to my confidence has fallen. I am probably not as strong a leader in his eyes as I once was. First I began to walk slowly, and then started using crutches, or a cane, and walked slowly, haltingly, and I noticed that Pogo was now much more wary of people, has become frightened, and even aggressive-seeming when someone with a wheelchair, cane, crutches, etc...comes by HIM. He may feel that now he has to protect ME more, since I'm less capable, and has likely been confused by my lack of ability to lead him in a strong way. So I've been talking to him as we go out and telling him that I'm in charge, that I'll take care of things and that he doesn't need to bark at or worry about bikes, fast walkers, loud trucks, and other scary things. I just hope I can live up to what I'm telling him.

Do What You Love

2006-04-05T08:29:00.000-04:00

I actually think I'm doing pretty great. I know I have expressed the moments when I've been downbeat (being the opposite of upbeat, but may not actually be a real word). Particularly when receiving discouraging news, but as I said at the time, I take the information, get mad, terrifed, sad, and all the other emotions that you would expect, then begin to process it, and find a way to move forward. I'm good at that. It takes some time, and I let it take whatever time it needs to come to that place. But I do it. And I don't pretend nothing is wrong, I just get on with things. I miraculously (even I think it's amazing sometimes) find a place to be positive and give my body the message that I'm alive.

I've been very busy working on my book manuscript, and all the illustrations that are going into it. It is a great focus for me, because it looks to the future. I'm going to make a book. I will see it finished. I am planning for the future. It's a vital part of dealing with a serious health crisis. I actually believe that the mind/body connection is of critical importance.

I only have so much control of my situation, but if I can look forward, my body hears that message and responds accordingly.

I've written about having to deal with pain in recent months, and that has been very, very difficult, and continues to be an issue. I've been forced to sit quietly and that is not easy for someone like me who is very energetic, and has always been on the move and on the go. It's been humbling (not that I like that part of it), and I have been forced to slow down, do a lot of thinking, and learn patience. (still learning)

Each step in the process is something to learn. I had to learn to BE. To just breathe. I've struggled with feeling the need to be doing something important. To not be idle. But taking care of myself, in resting, in healing, is not being idle, and that has taken awhile for me to grasp.

I'm still working on figuring out why I was born...why did my life take the paths it did....what am I supposed to be learning...

or is it not that big? Maybe it just is what it is.

In any event, I'm doing very well. I'm almost finished with the book, and an idea is formulating for another one. I've got paintings I want to make, and things I want to do, and I'm just moving forward and taking each step. It doesn't really matter if the book is published, it matters that I had an idea, I created something, and I try. I've been told by a friend, in the past, that trying to do artwork to make money is not that great an idea.... that I would have been better off (when I was healthy) to work at Burger King and just make some cash. But that's wrong. It does not, did not, could not satisfy the need for self-fulfillment.

That's more important by far than the minimum wage I would have earned doing some stupid job. Nothing wrong with BK if that's where you are, and that's what you need to do.....I'm just saying that to be given the advice that my creativity isn't important enough to feed, and that logging the hours and cashing a small check would be more beneficial to my life, was just plain wrong. When I was given this advice I was very hurt, and felt put down. I realize this person did not understand me or want to think I had enough intelligence or talent to be successful. I hope this kind of advice isn't passed to their children. Work hard, yes, and be humble when needed, but it's ok to stretch and try for something that you might be successful at, and that would give you a feeling of satisfaction. Someone gets to write kid's books, right? Some people succeed.....why not me?

long rant, but the message is:

do what you love, and encourage others to do the same

Not much to update

2006-04-03T23:04:00.000-04:00

Things are going fine, no big news, just continuing the process of adjusting meds and getting some pain relief, and dealing with various meds and such. Really, there's not much to report...I'm doing fine.

Working on my book, and keeping so busy I never have time to feel too bad.

I'll have a real blog note when there's anything to report.

Just consider no news is good news. Really.

All in All

2006-04-03T00:20:00.000-04:00

A pretty good weekend (minus the nightmares!)

So, I learned I can hold on tight to a pine tree during a tornado,
and that I don't like to be covered by blankets during sleep.

(all dreams)

oh well

one more thing to mess with

I'm teaching myself to wake up when I have them rather than scream and scare my neighbors. (and my poor pets)

I need to do more of this

2006-04-01T02:46:00.000-05:00

Here are some links to some wonderful blog sites from which you may gather inspiration if you're someone in my position, or just find interesting:

http://www.kidsisinhollywood.blogspot.com/
http://www.momscancer.blogspot.com/
http://www.momscancer.com/

http://lauriannes-hope.blogspot.com/

I have become acquainted with these amazing people over the last months. Read Brian's story, buy the book, and keep up with Lis and what's ongoing.

Also please read about Lynda's sister Laurianne, and her very young diagnosis of non-smokers lung cancer at the age of 24!!

Yes, smoking does cause cancer, but it isn't the only thing.

As my sister Carolyn says, it's probably all the crazy things we've put into this world that has caused the explosion of all kinds of cancer... crazy chemicals that clean our tubs and wash our windows, and keep our eggs from sticking.

The Sky is Falling!!

2006-04-01T02:20:00.000-05:00

Well, so dialing back the pain meds wasn't that great an idea. I'm ok, just needed to get up and take the rest of the dose. Oh well. I guess nodding off at various inopportune moments isn't all that bad. Like narcolepsy. I'll be sitting at the computer, watching tv, sitting talking with someone and I feel as if I've closed my eyes and drifted off...actually I DO close my eyes and drift off, but I wake up momentarily and everything is as wide-awake as usual. Like someone's Grandma. Well, I am someone's grandma. So there you go.

I'll just post a blog and get back to sleep in a few minutes.

It was a very warm windy day in Michigan yesterday, and I heard the weather is cooling off a bit, but still going to be like spring. Sounds good to me. It means all the loony toones in the building are out, though. Great. Wild walkers with canes circeling, voices screeching, bags rustling. You might hear gospel singing, jokes, the sound of grocery carts, or the click of pool balls. Yep. Springtime in lu-lu land.

But my apartment is great, and Pogo, Louis and I just creep back into our sanctuary and hold out. It's peaceful, my apartment is quite cute (if I do say so myself...homemade pillows and all). Poor Pogo, he is subjected to the lunacy, however, and has no clue what it's all about. All he knows is that any time we leave the room someone walking like Frankenstein may come lurching down the hallway to (heaven forbid) KNOCK on a neighbor's door, and the other night in the middle of hte night a decorative floral wind-chime thingy came crashing down onto the floor making a loud noise. He was terrorized. I had to hold him and calm him for several minutes he was shaking and had the look of terror on his face that he had when he was attacked by the Pit Bull. Poor guy. I had to tell him the story of Chicken Little. Then today when we recalled the incident I kept repeating "the sky is falling, the sky is falling" and he seemed to know what I was talking about. Apparently there's a bit of a mean streak in me.

(for those who don't know, Pogo is a dog, not a kid) But a smart dog.

Hot Fudge Sauce

2006-03-31T22:37:00.000-05:00

Julie, do you remember (I know you do) washing my hair in the kitchen sink at Thunderbird Resort? While rinsing my hair, my mother, your grandmother, had to interrupt me, hold a pan down by my face, and show me just what a softball stage of cooking candy was. One of the more absurd events in my life.

Well tonight, minus the washing of hair in the sink, I made some hot fudge sauce, remembering how to do it, having learned fudge and candy-making from my mother.

In this case, brown sugar, gourmet cocoa powder, mixed with water and cooked to a softball stage, and adding butter and vanilla - voila: hot fudge sauce.

Very delicious on ice cream. With a cherry on top. Trust me. It was good.

So I guess that lesson, though it took a long time being realized, was actually worth it.

:)

Just Being, not necessarily Doing

2006-03-31T08:36:00.000-05:00

Quiet times are essential. It's good to express things, even rant if necessary, but quiet reflection is where I feel I can best create the healing path that is right at that moment. I've been in my quiet time, and it has been healing.

I'm listening to wonderful music, Frank Sinatra, Ella Fitzgerald, Miles Davis....old standard, well-written music that is both soothing and alive.

I'm reading, drawing, working on my book, a little painting, and doing what many have said many times.... just "be".

I'm finally getting that, I think.

My job is to be. To breathe. To do what Lassie does. I had wonderful naps yesterday.

It's a lovely day, in spite of the overcast sky, it is warm, breezy, and the windows are open, and I'm listening to Frank.

big safety pins

2006-03-29T22:01:00.000-05:00

I get my support and inspiration from a lot of different places (not just the one mentioned in the previous posting. I get most support from my family, and other inspirational readings and doing. I guess I'm in that place that I keep reading about "spiritual but not religious", but I recall Sunday School days, and often, without trying to, I remember a prayer or a song or a quote. I guess you really don't forget what's ingrained in you from an early age. There is comfort there just the same.

Sleep time comes early again tonight. I'm going to listen to the circadium rythms of my body.

but I thought of this

a prayer I loved as a little girl
we were always tucked into bed (remember Eddie?)
and we went through the three prayers we were taught to say at bedtime:

The Lord's Prayer

The Children's Prayer :

Father Mother God
Loving Me
Guard me while I sleep
Lead my little feet up to thee (this is when we'd put our little feet up in the air and say "wheeee"
For Jesus' sake
Amen

and (which I believe is actually a line from a hymn rather than a whole prayer)

Everlasting arms of Love
Are beneath, around and above
God it is who bears us on
His the arm we lean upon

and we were then literally pinned into bed by a giant safety pin that held our homemade quilts tight to our beds

a sweet memory

A Wonderful Night's Sleep

2006-03-29T09:03:00.000-05:00

Very much needed.

If you know me well, you know I'm a Bernie Siegel, MD fan, and love his ideas, thoughts, and books. I also post and read on his sight,

and he is a funny guy with very humorous ideas, and one of the things he asks people to do when you're contemplating an action and can't decide what to do. In the fashion of WWJD, Bernie, who is Jewish, has a different twist.

He says: WWLD

go ahead, ponder it a bit

Bernie is an animal lover, whose family home, I'm told, is more like a zoo. He suggests we ask ourselves:

What Would Lassie Do?

Didn't Lassie solve every problem that came her way?
Didn't she always know what to do?
Didn't she always save the day?

Heck, who can forget the time the Lassie's Mother had her foot caught in the cougar trap, and there was a cougar in the tree!!
June sent Lassie back home to the farm house to get the "C clamp". (and held up her hands to show the shape) Well, Lassie, cocked her head to the side, and understood. She ran off to get the needed tool to free June. Alas, Lassie didn't get it right the first time, and she brought back, instead, the cheese slicer, which just happens to be shaped just like a C clamp. It was an honest mistake. June sent her back again, and Lassie was able to retreive the right tool and June was free. (this is an actual episode, I kid you not)

But the point of MY story IS:

Sometimes the best thing for Lassie to do is take a nap.

And that's my plan for today. Taking naps when needed.

The Exceptional Cancer Patient Site
ECaP, founded by Bernie
http://www.ecap-online.org/home.htm

hanging in there....

2006-03-28T21:36:00.000-05:00

exhausting day, no news to report

feeling sleepy and going to go with it

up in the night again

2006-03-28T01:20:00.001-05:00

It's warm enough to have the window open. I hear quiet city sounds. Downtown Lansing, directly adjacent to the government and the capitol area of town closes down at 5. There is a library and Cooley Law School, a couple of coffee shops, but that's about it. Very safe, very quiet. The streets are lined with decorative lamp fixtures, and one of the streets that heads off verticallly from my block has a string of those light poles, and it glows in a red/yellow way.

It sounds as if the streets might be damp, but I don't think it's raining, I suppose it's dew. Spring and fresh sounding.

Listening to a sad song written by a friend of mine. I'll share on request, because it is sad.
It's just a reminder to savor each breath, and enjoy the moments.

As you can see, I'm in a quiet mood, because of the quiet night, but maybe one of those moments I'll keep to just me.

up in the night again

2006-03-28T01:20:00.000-05:00

sorry for being so quiet

2006-03-27T20:03:00.000-05:00

Had a quiet weekend, I needed some recovery time after my long day Friday. I did fine with the new drug but had some other things crop up that I needed to handle. One was fatigue, the other the change in meds and what that does to you. Up on some, down on others, and generally feeling confused, lonely and scared. Jon and Jen came over Sat and brought me movies, made Rueben sandwiches and hooked up my dvd to my stereo, and just otherwise chilled out.

I had developed a weird rash, but not to the new drug, and my right leg became very swollen and painful, so in between dealing with that and worrying and calling doctors, I ended up going to Ann Arbor today to make sure I don't have a blood clot in my leg (which i don't) and finding out I have shingles. (add laugh track here) Great no clot, shingles.... whatever...I'm contagious to anyone who hasn't had chicken pox, but for me they'll be over in a couple weeks and now I have 2 new meds to add to my old-lady daily, hourly, medicine dispenser.

I didn't want to post worrying stuff, so I waited, and that's what's going on at the moment.

tired
very tired

and so irritable my apologies to sisters and such (sorry, sorry)

just remember it's not the real me....it's the sick sad scared me just trying to get things right, and get things done, and try to take care of my Little Lynne as well as I can (she's all I got)

so that's it

One last post for the day

2006-03-25T21:44:00.000-05:00

A blog or two back I said something about my wonderful friends, and the good and bad people I've had in my life.

I want to clarify that anyone who I've given this page to, is one of the good ones. I don't speak to the bad ones. Those who are invited here are here because I love them, and know that they love me. (yes, all of you, admit it!! ha ha)

Doesn't anyone want to post remarks on my site? Please feel free, I'd love to read them. It will let me know who's visiting.

Do you like my new profile picture? It's from Jonathan's wedding. I swear my hair has hardly grown since the end of November. I'm telling ya, I'm seriously going to get wigs if my hair gets thin again. It might not, but if it does, I'm going to be blond one day and a red-head the next. (well......)

so that's it for today...as I said

ahhhhh

2006-03-25T10:44:00.001-05:00

I needn't have worried, I had a good night's sleep and feel fairly well today. It will be a weekend of relaxing, and maybe watching some movies.

So far so good.

is it time for bed yet?

2006-03-25T00:23:00.000-05:00

I have a fear of going to bed, because of the pain-filled sleepless nights I've been having, so I'm post-poning going.

My visit with the doctor today was stressful, because everything ran late, and I was very, very anxious to begin with because I was starting the new treatment protocol. It went just fine, the IV didn't hurt, I had a great nurse, the infusion (fancy way of identifying way they hang the plastic bags of meds on the poles and dripping it into your body through an IV) I had the usual bone strengthening Zometa, which takes 1/2 an hour to drip, then a few minutes of a flush with saline, then they hang the other bag of the new Alimta, which takes 15 minutes to drip, another flush.....and then another flush, because after 30 oz of liquid in you the closest open door to a bathroom is what you head for)

I was given a beautiful scarf by a very special new friend. It belonged to her mom, and she and she sent it to me for comfort. I wore that around my neck today, under a jacket, and felt less alone, loved, and got many compliments. Thanks Lis.

UM Cancer Center is a bit overwhelming, because it is large (by compariosn to Traverse City anyway) The center itself is laid out very well, and everything in there is very convenient, but they do see hundreds of patients daily, so there is waiting.
The layout is great, the lab and xray depts are on the first floor, off to either side of the entrance, and the flow there is very good. Then up a floor are the doctor offices and infusion (treatment) areas.

As a routine when seeing your oncologist, you get bloodwork done. They need to know that your your organs are all functioning properly, and that there is nothing to contrindicate the treatment going forward. Then you see the oncologist, for an exam and talk to again make sure you are doing well before proceeding. (well, if you were getting an infusion a few times a week, you'd not be evaluated by your doctor each time) I will get my drug only once every 3 weeks, so I just see him each time I come. There was a delay today simply because they were running late, (only an hour, nothing horrible) but I was so anxious and had a splitting headache from the tension. My blood pressure was 159/? when it usually runs 115/?. It was anxiety. Last time I was in that office I received the bad news about the disease progression, so my body remembered that and was worried. (SEE HOW YOUR THOUGHTS AFFECT THE ACTUAL ACTION OF YOUR BODY?)

We had a long discussion about the pain issues with my right leg. As you may know if you've been reading my notes, the steroid I was given in prep for radiation dramatically reduced the pain due to inflammation. The problem is, that being on this steroid long term can have serious negative complications, so they don't like to use this a pain reliever, even though it acts as one. Some side-effects are stomach problems (ulcers), bone loss (which I sure don't need since I have cancer in my bones), and a much higher risk of infection (a serious problem for a cancer patient due to their already suppressed immune system, and due to the lowered white count they often have due to chemo). So, the trick will be to find the right pain relief for me, and to get me off the steroid if at all possible. I want to be wise and not create problems I don't have now, and sure the heck don't want to have complicate things. Roids also cause problems with mood and anxiety and general crankiness. (roid rage, right? .... though this isn't THAT kind of steroid)
I can't bear it if 2 people are talking at the same time, I just can't process it all, and I get annoyed at the dumbest things. (for example my neighboring apt has a sign on the door that says "I love elephants" . sheesh)

So, the plan is to make adjustments to the pain meds, and then slowly step down the steroid.

My doctor said "you look great". (medically speaking, people) I said that I feel good....and that one of the most frustrating and difficult things about being disabled by the pain is that I'm sitting in a chair, in an apartment, just wasting the time I have left (we all have limited time, y'all). I don't want to sit and waste it. And otherwise I feel GOOD.

I was also told that my fracture just might not ever heal because the bone is compromised by the cancer, and that the pain is caused by the inflammation brought on by the fracture to areas of muscle, tissue, nerve, tendons, and whatever else there is.
My right ankle is swollen, and I feel like I'm about 90 sometimes. You should see me shuffle around when the pain is bad.

And today, since the appts all ran late, I missed my afternoon dose of pain meds, so by the time I got home at 8, I was in extreme pain, and was literally crying with each step from the car to the lobby of the building where I left my Go Cart. Josh took me today, and was a great help, but I know this is hard for him to bear, he felt so bad when he saw how much I was hurting. But I got settled in and felt better, and Jill came over and shared a coffee with me, and I whimpered and cried on her shoulder for a while and we watched Nanny 911 and made fun of people. Sometimes there's just nothing better than making fun of others. (if done nicely, ha ha) And when I saw my right ankle was fatly swollen, and how my calf has shrunken somewhat from underuse.... I just cried again or more. I used to be perfectly healthy, walking, hiking, kayaking, biking, and now I use an old-lady footed cane and drive a frickin' Amigo. I hate it hate it hate it. DARE me to smile and be chipper about these changes.

So I'll be again adjusting medications, and pray I'm getting it right. I have one of those granny pill holders that holds a week's worth of medications, compartmentalized into times of the day. I have a pharmacy in my kitchen cupboard. All legal.

I should go to sleep.

hope the people who need to read this most are reading

Home

2006-03-24T20:55:00.000-05:00

My first Alimta treatment went fine, I'll write more soon. I'm tired, and looking forward to the Carmel Mocha Coffee Jill is bringing over. :)

Friends

2006-03-24T00:07:00.000-05:00

I am a very fortunate Lynne, because I have such wonderful loving friends. I have found the most amazing people in my life. I have had my share of bad people as well, but the good ones..... are very good. (unfortunately the bad were pretty bad)

To bed for me, tomorrow is a new day. Each day a new beginning, and a new opportunity to fulfill myself and my life. One day at a time, with one foot in front of the other.

(there's some story somewhere about a kid doing a school report on birds and the task seemed daunting until his father gave him the advice to just take it "one bird at a time".

That's my new goal: One Bird At a Time. Could be my next children's book. The Pogo book is about 2/3 done, and I'm going to give it a whirl. (on demand printing, and then submit it to real publishers) (can't hurt, right?)

goodnite my friends
and you know who you are

Better

2006-03-22T15:38:00.000-05:00

feeling better

good ol' steroids

they pump YOU up

Cute Pic, huh?

2006-03-21T19:33:00.000-05:00

Wasn't I adorable?

Follow the Yellow Brick Road

2006-03-21T19:16:00.000-05:00

New plans for pain control.... hope it works!! I hope I sleep tonight, because the last 3 nights have been spent watching bad cable, holding a heating pad, crying, drinking hot chocolate, eating popsicles, and trying to get an hour or two of rest. Sitting up feels better than lying down for some reason.

What big guessing game it is. All the doctors and nurses have differing opinios, and some even...horrors.....make MISTAKES!!

I have a family doctor that I can't even get in to see, he won't return my calls or emails, and he came highly recommended. BUT...he's fired. He doesn't know it yet, but he is. I need someone to monitor my basic stuff...

and let the litany of other specialists deal with the big stuff.

whaddayagonnado?

And to make matters worse, for one of the nights, the batteries in my remote control were dead, so I had to pull my chair close enough to use a stick to change channels. THAT is a hilarous image, is it not? Pathetic. And weird. And humbling.

Still Struggling

2006-03-21T07:01:00.000-05:00

The days are good, the nights are bad. Very bad. I'm expecting to get some help today when I talk to the doctor. I admit that I have skepticism about the relief and help I'll find, because this pain thing has not been very well controlled, but they seem determined to get to the bottom of it. Next step will be a pain clinic. I'm going to ask about that today.

Rough Weekend

2006-03-20T19:33:00.000-05:00

Once again having severe leg and hip pain, and trying to get the meds adjusted. Very hard to sleep.

Please send all your good energy my way (ok, not all, save some for yourselves)

Pogo getting into trouble.

2006-03-17T09:43:00.000-05:00

Pogo getting into trouble.
Originally uploaded by lynnegr8t.

sample illustration for book

What in the world is a Pogo?

2006-03-17T09:37:00.000-05:00

Working on my children's book, doing paintings, getting an Ebay story up and running, trying to be creative, productive, and maybe make a little cash on the side. The book is just for my own amusement and creativity, the art is therapeutic, and the cash will buy food. :)

Schedule Change

2006-03-16T10:43:00.000-05:00

Instead of beginning the Alimta (new chemo) tomorrow, as stated earlier, it has been post-poned til next Friday so that I can complete my radiation before beginning it. Fine with me, I have one more week to emotionally prepare, but I've heard this drug is extremely easy to tolerate and I should have little problem with it. (whew)

So, I'm excited and happy to be able to run around like a normal person for another week, and then I EXPECT the Alimta to do it's trick and give me many long days, weeks, months, years of freedom from the bad thing.

Censorship

2006-03-15T08:09:00.000-05:00

After hearing a reader express they were worried about my anger expressed in a post, I've censored my words a bit, but I don't think that's a good idea.

I'm not quite using this as a journal, that could get very personal, and some things I don't want to share, but for others to understand what someone with cancer goes through may help me and others.

The whole gamut of emotions that surround a person who has to face the very real possiblility of their death is huge, and can't be taken lightly. The expression of emotions is critical. Holding them in is not healthy, and THAT is what can hurt me.
So, if I sometimes worry you, just know that my emotions are raw and real, and they need to be expressed. You may actually understand me better by reading about them.

A positive attitude is extremely important, but it doesn't just come with a Pollyanna smile and a wave of the hand. It's hard work. First you have to process the medical information, assess how it does or doesn't apply to you (everyone is different, and I am not a statistic), research your situation so you know that what the medical team is proposing is right for you (you could choose to go somewhere else, choose alternative methods, or do nothing), try to understand as much as you can, but not take in so much you can't handle it.

Imagine being hit with a sledge hammer. Literally. You'd fall down, perhaps pass out, recover consciousness, feel the pain, wait for the throbbing to stop, move your limbs to assess the damage, try to get up yourself...if you can't you call for help...
determine what medical attention you need (ER? doctor visit?), let the doctors assess the situation through tests, hear what they have to say, learn what they think you should do next, and then you have to weed through the information and make decisions that only YOU can make and strive for recovery. During the treatment you choose, you then deal with all the emotional factors involved with your accident, and the difficulties you have with the medical recovery, and try to keep a positive focus so that you can continue to work to move forward.

Friends don't often know what to do, and the emotional impact it has on them can paralyze them. I understand this very well, having lost family members to cancer, and having in some situations found myself paralyzed with fear and sadness.

I'm grateful for my friends and family, I know they love me, and have talked about how knowing that my illness has an emotional impact on them, and how that makes ME feel sad for them, and how personally I feel that and feel (unintentionally) responsible for them feeling bad.

Friday I begin the new drug, which will be administered only once every 3 weeks. It is a traditional chemo in that it kills errant cells, but also works on a protein on cells to diminish growth, so it works in a couple ways. I will visualize the energy of the cells diminishing, and in this way my thought can positively encourage the drug to work as it is intended.

I do believe that my thought can affect my body, yet I know I am mortal like everyone else, and I will just do the best I can, and that's all anyone can do. So, I'm using my anger as an emotion of strength. The Fight, not the Flight.

just to balance my karma....

2006-03-14T19:18:00.000-05:00

complained-about radiation oncologist from last week's post was very sweet to me today

What do I need?

2006-03-13T22:04:00.000-05:00

Not a sinus infection, but that's just what I got. Oh well, if all goes well, the antibiotics will have kicked in by this time tomorrow and it will be one less thing to deal with.

I spend way more time than I want to in doctor's offices, and cancer centers.

I still marvel at the large numbers of people who are walking around with cancer, just like me. I sit with them in the waiting rooms, we read magazines, chat, and act like "normal" people. It was a shock when I first realized just how MANY of us there are.

And just for the record, it's impossible to be "cheerful" "positive" "upbeat" "strong" "never complains" "brave" "a fighter"

ALL the time, just to please people who want you to be. They want you to be because they want you to be well, but it would be oh so abnormal not to be angry, sorrowful, down, discouraged, whiny, needy,

SOME of the time.

We do our best, and that's all we can do. As I said to a friend, I'm Lynne, not God. I will do my best, work hard, and the rest is in the hands of the universe, God, or whatever name you give the energy in charge. We are all mortal, and unfortunately, I have had to stare my mortality in the face.

Our thoughts affect our bodies, our attitude can shape us, but we are, still...... fragile entities of human birth, with spirit and intelligence of heavenly beings....here to learn....here to live......... and eventually to move on. We don't choose the timeline, though we may choose the path.

Moral of the story: Live each day. Love your family and friends (both human and animal). Eat chocolate ice cream. Sit in the sun and feel the warmth on your face. Nap. And say no when it is wise to.

Like a Sledgehammer

2006-03-09T21:32:00.000-05:00

got hit by the radiation hammer today...for some reason it just wiped me out. I know that radiation is cumulative, and as I've had a few hits of the old radiation beams, it caught up with me today. Deep sleep this afternoon, and I had a bit of a struggle clearing my head and feeling like myself again today.

Attitude Adjustment

2006-03-09T11:11:00.000-05:00

In the 2 weeks since getting bad news (again), I am beginning to regroup. I have all the normal, appropriate emotions, have expressed them, ranted and raved, cried, and felt all the things one would feel in this situation.

However, I have turned a corner, thanks to a good friend. I needed to be reminded to use the strength of my emotions to work for me and not against me. I am back on track.

Thank you friend.

what am I, stupid???

2006-03-08T12:08:00.000-05:00

another shining example of how I'm not being taken seriously:

today, at my checkup with the radiation oncologist, I wanted to mention that even though I had not had any pain in the area of the bone met, which is the object of the current radiation, that since beginning the radiation, I was feeling some minor discomfort there. I simply wanted to report it, since it was new, and felt a reasonable thing to discuss.
?
She sighed loudly...said "pain where in your spine"..... and said it might be due to the hard radiation table...... ????? what?????

and I said.... the table??? in a confused way

she sighed again
then said in a frustrated voice:

I just don't know, Lynne
opened the door, and ushered me out

failure to communicate, but I don't think it was on my part

apparently it was felt that annoying Lynne was asking another stupid question., and that to respond intelligently would be a waste, since Lynne is not only annoying, but stupid!!!

I am ready to fire everybody.