Friday, March 31, 2006

Hot Fudge Sauce

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

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.

Wednesday, March 29, 2006

big safety pins

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

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

Tuesday, March 28, 2006

hanging in there....

exhausting day, no news to report

feeling sleepy and going to go with it

up in the night again

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

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.

Monday, March 27, 2006

sorry for being so quiet

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

Saturday, March 25, 2006

One last post for the day

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

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?

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

Friday, March 24, 2006

Home

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

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

Wednesday, March 22, 2006

Better

feeling better

good ol' steroids

they pump YOU up

Tuesday, March 21, 2006

Cute Pic, huh?

Wasn't I adorable?

Follow the Yellow Brick Road

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

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.

Monday, March 20, 2006

Rough Weekend

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)

Friday, March 17, 2006

Pogo getting into trouble.


Pogo getting into trouble.
Originally uploaded by lynnegr8t.
sample illustration for book

What in the world is a Pogo?

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. :)

Thursday, March 16, 2006

Schedule Change

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.

Wednesday, March 15, 2006

Censorship

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.

Tuesday, March 14, 2006

just to balance my karma....

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

Monday, March 13, 2006

What do I need?

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.

Thursday, March 09, 2006

Like a Sledgehammer

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

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.

Wednesday, March 08, 2006

what am I, stupid???

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.

Tuesday, March 07, 2006

arrghghghg!!!!!!!!!

The first thing I learned this morning was of the death of Dana Reeve of lung cancer at age 44. I am furious!

I had an uneventful radiation treatment, my son Josh came and cleaned and helped me with laundry, my son Jonathan brought over his fabulous chili, and I spent some time enjoying the sunshine coming in the window of the laundry room, and otherwise enjoyed what was a very beautiful early March day in Michigan.

I'm getting ready to watch American Idol, my current shameful diversion. Let's see: chocolate or vanilla ice cream with strawberries?

Saturday, March 04, 2006

Hanging in there....

So far so good with the radiation. Interestingly, my hip pain has almost completely resolved with the steroids given me to ease the affects of radiation. I am furious that my pain has not been managed properly, and that I have been in pain since October, and no one considered inflammation and possible need to reduce it to reduce pain. (well, no one except ME!!! And I asked repeatedly, questioned my doctors, feeling that the pain could be a result of tendonitis or other less serious reason than bone cancer.)

Medicine is a joke sometimes, a big guessing game and the patient is supposed to be in charge of their own health care and advocate for themselves, but we have to educate ourselves, and ask questions...and without a medical background, we don't always know the questions to ASK!!!!!

It is infuriating and frustrating.

But, I'm hobbling with less pain, can actually now lift my knee to put my clothes on. I'm being very cautious, but with less pain I can be more mobile. (to go to chemo, yay)

Sorry I am venting, everyone, but pretending to be cheerful about my situation would be absurd.

Thursday, March 02, 2006

Subscribe?

I haven't figured out how to subscribe so you can receive notification if I update. Hmmm

2nd radiation day

was easy. In and out in 10 minutes. Woke to freezing rain, icy windshield, and slippery roads, but I made it. I have no garage or cover at my apartment, so slippery sidewalks while on crutches or cane, and scraping ice off a windshield are not good for a person with a hip fracture and a spine problem. But I had no choice. I let the car heater and windshield solvent do most of the work.

Then I went to Kroger and bought the essentials: chocolate ice cream, coke, and stuff to make lunch.
Had lunch, and then napped most of the afternoon. This radiation seems to make me sleepy, which is fine. Pogo and Louis (dog and cat) snuggied with me.

so, that's today

Wednesday, March 01, 2006

Give this a try...

I'm going to try to use this space to keep everyone up to date. It's hard to write and call everyone, and this way people can just log on at their convenience and get the latest. (presuming I keep up)

As many know, I've had discouraging news recently, and will begin new radiation to my spine and new chemo. I had my first appt with the radiation oncologist today, and she says the spot in my spine is very tiny, and had a hard time finding it...but feels the safe thing to do is to radiate it so it doesn't cause problems down the line. (there could be potentially big problems)

The radiation went fine, I'm on steroids for that, will have more steroids when I do the chemo, and will have 14 low-doses of radiation to the T-8-9 area of my thoracic spine. I may have some side-affects, but nothing too severe, from what they tell me.

I'll begin Alimta, a once-every-three week infusion on March 17. Typical side-affects possible, low white count, low red count, possible hair loss, fatigue, mouth sores, nausea...we'll see. Sounds like fun.

The radiation takes place in Lansing at a UM affiliate radiation oncologist.
The chemo takes place at UM in the Cancer Center.

If you want to reach me:
lynnegr8t@yahoo.com
517-372-8572 (home) or 231-392-6633 (cell)

500 S. Pine St. Apt 401
Lansing, MI 48933

Please feel free to check in here often, or subscribe to be notified when new information is posted.