Sunday, April 30, 2006

I have an idea

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.

Friday, April 28, 2006

a book and other stuff

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.

Thursday, April 27, 2006

OK

you don't have to rub my feet

Hydascan

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?

Monday, April 24, 2006

I should probably

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.

Saturday, April 22, 2006

doing well

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

Friday, April 21, 2006

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

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.

Thursday, April 20, 2006

Pretty good day

hanging in here, and had a good day

Wednesday, April 19, 2006

Never A Dull Moment

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

Sunday, April 16, 2006

Ahhhhh

nice day, very tired tonight


time for an early bedtime (very early)

goodnight everyone

Saturday, April 15, 2006

Great day

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.

Thursday, April 13, 2006

no more

As I said to Julie yesterday....

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

Tuesday, April 11, 2006

Flawed

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.

Monday, April 10, 2006

great weekend

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

Friday, April 07, 2006

The Dog Whisperer

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.

Wednesday, April 05, 2006

Do What You Love

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

Monday, April 03, 2006

Not much to update

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

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)

Saturday, April 01, 2006

I need to do more of this

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!!

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.