Friday, December 03, 2010

Addicted

Yesterday my husband brought me to Radiation.

I look forward to when he brings me because it means a nice lunch out, just the two of us. I really like that.

Yesterday I had several appointments so couldnt ride the "Party Bus".On these extra appointment days he takes off from work and takes me.

The whole dang day all I did was talk about the bus, talk about the driver, talk about the Party goers and talk about how it is to be in the waiting room waiting for treatment. Like they were family. And I desperately missed them.

How odd is that that I'm addicted to my Party bus? I hate that stupid van and I hate the whole thing but now I see that since its become my world that when I was away from it yesterday I fretted over missing something while I was away. I realized I identify with them more than my family or friends and I feel more comfortable there. This little bit of personal trivia makes me feel very uncomfortable.

I cant wait to see the people and the driver and that is just odd. Heartbreaking but understandable.

And now I realize the truth of all those tv reports and investigations saying that prisoners feel lost and abandoned when they are released back out into the world and want to go back in.

Oh lord please erase this latest bit from my mind. Please please please dont let my mind absorb this and take it as fact.

Wednesday, December 01, 2010

The Party Bus


The Party Bus is really a utility van with seats. I've talked about it before so you know its pretty basic and it makes for a long bumpy ride. It is about 1 and a half hour trip there and the same back.

I am in my fifth week. I cant believe how fast the time has flown, it doesnt seem like I've already done 4 weeks.

The waiting room is filled with the same people every day, and I of course have turned it into a place where we greet each other as other patients and vans from far away places unload. When we started the waiting patients just stared straight ahead. Not me, I chat everyone up. Now its meet and greet and I like it that way.

We got a two new passengers, I used to be the only one.

Now it really is a Party bus.

There is one man, about 60. He has a deep smokers voice from Detroit. Lived in the fast lane his whole life, you can tell by his stories and the way he talks. He is always on the phone making plans for "libations" after he gets off the bus. The next morning when he gets on he slinks on with dark rings around his eyes and his coat reeks of bar smoke. I imagine all the reasons since we never talk about the particulars. He sleeps all the way there, while there and all the way back. He has manners though. Slick manners like a 'play-ah" so it kind of creeps me out. But he is pleasant and he smiles.

The newest passenger came on the bus with 'tude. The 'dont talk to me because you have cancer and I'm not going to be associated with you other cancer people' kind of attitude. I squashed that right away. I could tell she was the type to keep her angst inside and she was hurting. Kept talking and chatting to her and kept smiling and finally she broke yesterday and told me how weary she was of cancer and the funk she's in and how she is just frustrated and tired, and I was able to tell her "ME TOOOOO!" and thats why we are friendly and must talk. I told her no one is going to understand her like "we " do. I told her we are her "right now for a reason" friends and that if we never talk or see each other its ok because right now we are supporting each other. Yesterday she thanked me for talking to her and making her see things differently.

I like that about myself. I really do. I dont like a LOT of things about myself but that is one thing I like. I really love people. I dont care what creed, color, station or anything, I just love you because you are human. And I care. I smile at the nasty dirty poor ugy patients that every one scoots as far away as possible from. Yes they smell and are nasty. But. But they are human and want just as much recognition that they are human and alive and HERE as you do. I smile and acknowledge that. And I am glad I'm like this. It drives my husband insane but it makes me happy. I get everyone smiling and talking and chatting and that makes me satisfied in the very pit of my core being.

So yes I made the few people who get on the party bus a chatting and a talkin' and now every day its like greeting friends when we get on the van to take us to get our skin burned to kill those nasty cancerous cells lurking in our flesh.

I'd rather pass the time on a Party Bus rather than a utility van wouldnt you?

Monday, November 08, 2010

Daily Dose of Sunshine

Last week was the first week of radiation.

The first day is called "mapping" and it involves lead wire. THey tape wire with lead in it around the area to be getting radiation and then do a CT scan. Then they mark all the areas with red permanent marker and take the tape off. They give this scan to the Radiologist and he maps out the degrees and voltage (ok I'm making up voltage but I dont know what its called) and then they send you to an X-ray machine to x-ray the area to make sure the CT scan mapping matches the Xrayed area of concern to radiate.

Radiate? sounds funny as I type it.

Like I lost some sunshine and they have to give me radiation so I radiate again.

Anyway.....then they come at you with black permanent markers and they wiggle and jiggle the x-ray table so that you line up with the marks, remark with black permanent marker and see if the x-rays line up with the CT scan mapping. When its all good they come and give you permanent tattoo dots where the marks are. I have 4 freckle sized permanent marks now.

I was pretty upset about having ink injected in four spots on my chest. It hurts like an angry ant bite. I dont know if its the same as getting a real tattoo since this was a needle with ink in it like a syringe but I sure wouldnt get a tattoo anywhere as a design if that is how much it hurts. Not bad for one single injection but to imagine a whole pattern done is beyond me.

Then after they X-rayed and lined me all up, I got my first dose of radiation. I felt nothing. Its just like getting an x-ray only it lasts a little bit longer, 3 minutes total.

The first day was 5 hours long due to the mapping and everything and after that it was a 10 minute appointment. I go every day except weekends for 7 weeks.

The people handling me and the radiation machine are called Radiation Therapists. Thats what my son has decided he wants to be. He will apply to colleges to be a Radiation Therapist. They have an active job getting the machines set right and helping patients to get lined up and then scurrying out of the room to give the radiation..I think he will do well at this job with his caring and kind personality.

Due to where I live and the insurance I have, the location for this is far away so they offer a shuttle that will take me from the doctors office to the large hospital where they have the radiation machines. This Shuttle is just a large utility van and I have dubbed it the "Party Van".

Its no party as I'm the only patient on the Party Van but I plug my earphones in and listen to the music my son has put on my ipod and text people. I cant read or do any crafts since its a bumpy utility van and I am hanging on for dear life but I enjoy the absolute void of any responsibilities and enjoy the music and conversations on my phone. I bring snacks for the ride home and just make the best of it. I'm usually smiling during the ride.

After all, its the only time in my life the past 25 years where I'm obligated to do NOTHING. So I'm going to enjoy it.

Saturday, October 30, 2010

The two schlepp to Radioactiveness.


My Radiation process started Friday. My planning appointment and first actual radiation treatment starts Monday.

I am pretty calm about this process, just want to take it one step at a time.

I think I was more apprehensive about getting the flu shot this year.

The actual drag with my Radiation (and people who get my kind of external radiation are not radioactive and dangerous) is that its far far away. My insurance pays for a shuttle that will shlep me from the clinic to the Radiation place and then back to the clinic. Free Shlepping.

So I wonder how THAT part will be. Will be I be overwhelmed by the ickiness of being with other very sick people who need radiation? Will the ride down and back "get" to me? Will I end up makeing it the "Party Bus" and talk and laugh all the way there and back? I'm afraid of getting grossed out by the whole bussing thing. Is that even wrong? Being all obnoxious about having to ride with other cancer patients? In my head its like a prison bus and we all single file line up and get patted down to go strip and get radiated and then schlepp back on the bus like zombies. I guess I really am apprehensive.

Its the unknown. Not knowing how it will be.

My family is tired of me being sick. I can tell. My husband mostly. I dont mean that he has said a WORD or implied that he is. I just know. He is going through work issues that weigh him down and I imagine he would love to scream at me to get my butt in gear and HELP with everything financial and work related. Having half a wife must suck big time. And then not to complain about it, or if you do complain about it you feel like such a creepster. I imagine in his head he feels like screaming. I would.

All my energy is spent going to appointments, keeping up with the laundry and piddly things I do and getting my son's college apps prepared. Picking colleges and filling out endless surveys and paperwork requirements. Gathering papers, college transcripts from his summer courses, letters of recommendation and then endless homework help and scheduling for him. It consumes every drop of energy and I still cook dinners and get the house organized. As much as I can every day.

But its all half of what I wish I could do. He asked me to come up with a great and wonderful brainstorm of ideas for a new campaign for customers, maybe a direct mailer idea. I'm against direct mailers this time and we started discussing it and I just plain got pooped out and just said "whatever you decide, do". I just dont have it in me for hours of ideas just to argue. Not argue, I really mean discuss. We get all animated and excited and pitch ideas and it used to be fun but now I'm just not up for it.

pffft. Just too tired so cant.

I actually felt it yesterday. The beginnings of my mid life crisis.

I just knew that I would when my son was going off to college and I felt with clarity yesterday that I was indeed choked by life.

I felt that feeling of overwhelming angst. The boredom and disgust with the present and the desire to go back and go forward all at the same time. It was just but a moment but I felt it reverberate all through my soul and it made me stand stock still and digest it and know it.

I realized that I must not go back to the old life before cancer struck. I cannot go through the stresses of the former way I led myself. I have to do more for me; more to feed my mind and my soul.

As I go through radiation for the next seven weeks, every single day except weekends, I will need to take this time to come up with a game plan. A mid life crisis Plan. One that will work to the benefit of all that I love, but one that will allow me to be who I should be too.

And one that wont include me on a Harley in black leather with a wedgie from a thong.


Friday, October 08, 2010

Hark the herald angels singing

The tests all came out negative......breast number two cleared. The ultrasound showed nothing.

Can we all say together: "WHEW!"

We were running late from the chemo room aka Party room but we drove fast and furious after my nurse called ahead and the receptionist at the hospital imaging dept said that we had better hurry before the technician leaves !
I ran in the halls and we got there JUST before she left so I did the mammogram.....she took some pictures, told me to stay put and went and talked to the doctor. She said that if it was all clear that I could get dressed and go but no.....to my dismay he said he still wanted a sonogram done of BOTH breasts since there was a question from the surgeon on the surgery side and then the new spot on the other side.
I didnt know about the question the surgeon had about the original side that already had the surgery so my heart was in my throat THE WHOLE TIME.

She took me to the ultra sound room and as I lie down on the table the ultra sound technician explained what they saw and what she was doing as she examined me. She said she saw just dense breast tissue but that she needed to consult with the doctor.
He said that he sees only just regular dense tissue but wants a recheck of the breast in three months to see if any thing has changed or grown. But at this time they feel its nothing.
On the surgery side they still have a question about the tissue inside and want another songram done but at this time they feel its just unusual dense scar tissue.

I will take that news as all good!! :-) I was very relieved!! I kept asking, "So there is nothing? its all good?" and she kept saying "Yes, yes yes!" She was happy for me too!!

Having such a great weight lifted off my shoulders is a blessing!! I felt weightless and happy and just so rejuvenated with life's joy the rest of the day!


Wednesday, October 06, 2010

Mystery spot

Sometimes in life when you are handed lemons you really cant do all those things they say in silly quotations like 'make lemonade' or 'ask for vodka to go with it' or 'throw them back'. You just have to hold your breath and go with it, work through it, and see how it goes.

Two weeks ago they told me that I needed to have a mammogram as a check up. It kinda hurt a little more on the surgery side but not really that bad. I dont think mammograms hurt too bad anyway. They have pressure but not really hurt and its only for a minute or two anyway. It hurts more on the pinchy underarm muscles more.

They always say when you are done that if they see something the doctor will call. When they called the first time I kinda expected it because I felt an odd reaction from the X-ray tech after she took my X-rays and she told me the doctor would call me, she didnt say "if" so I really right from the beginning felt something was up with that mammogram. But this time I felt so relaxed, after all; it was just a check up and they just wanted to see how the breast is doing...They took pictures of both breast, the clinician told me to get dressed and if the doctor saw anything suspicious he would call.

They called a few days ago while I was delirious with spider venom.

They found something mysterious on the OTHER breast. Yes.... O T H E R breast. As in totally different breast and possible new cancer? tumor? Mysterious...suspicious.. and terrifying to comprehend.

When they called I sucked in my breath and listened and figured out on the calendar when to do the appointments and then hung up and cried. Then called my husband. Then took more pills and slept off the rest of the spider venom.

Good thing I was on happy pills and pain pills and just vomiting, moaning, and writhing in pain from venom and not really focused. I guess there really is a disguised blessing in every tragedy.

Today is the day I go from my chemo session to three special appointments to see what is behind mystery lump number two.

I am not really nervous.

I am just holding my breath.


Friday, October 01, 2010

Never enough drama

So I've been feeling great lately. The 21 day break between chemos is a godsend. I have enjoyed every minute of it. Not taking one second for granted. I lay my head down each night with a smile and wake up happy to be up.

So happy and well in fact; that Sunday morning I tackled the patio and its dusty and cobwebby chairs and tables and the odds and ends that gather themselves out on a patio during the summer months. I slipped on my flip flops. The kind that are really thongs but we cant say thongs for footwear any more because people think of slingshot underwear now when we say the word thongs. In the olden days though thongs were rubbery thin plasticy sandals that you wore to the beach. And where ever else you could get away with slipping them on and running to.

Any way.

So I slip on my flip flops and begin brooming down the cobwebs. My what a prolific year for spiders! There was so much dust and little bits of leaves stuck to the webs so I got out the hose and decided to just power hose everything. I felt a sting in my toes and looked down.

I got bit.

Spider bite.

Black widows frolicking all over patio.

Im ticking them off with broom and hose.

I go in the house and show my husband and he comes out side to see where I got bit. Which thinking of it now seems kind of funny, like who cares where outside I got bit? Is it location location location like when you buy a new business? Hmmm I will have to ask him about that.
Anyway
I was slipping on my flip flops to show him where I was standing when I shrieked and kicked off the shoes and said. "Oh my god it might still be in there" I flicked the left one off first and this huge black widow spider fell off the shoe. I just stared at it for 20 seconds. My husband said" Get your things and lets get to Urgent Care.

Urgent Care.
Good things can be said about Urgant Care Facilities.

I cant think of any so lets skip to the part where they tell me that Nothing is wrong with me and the spider mustve bit me but left no venom and sent me on my way.

We had tickets to the circus so proceeded on our way there. I was texting and bragging that I fought a black widow and won.

i did not.

During the circus I started feeling back spasms and my chest tightening. then I felt immense pain in my foot.

Off we go to the Emergancy Room.

Did you know all you have to do to clear an Emergancy Room is hold up a ziploc baggy with a black widow spider in it and grab your chest?

Its amazing the service they give you there when you do that. ESPECIALLY when you are a bald cancer patient wheezing that they need a face mask for the germs.

There is anti venom for black widow bites.

They just cant give it to you.

The antivenom is worse for you than the black widow spider bite so you just have to live through it.

They gave me happy happy pills and then they doped me with pain meds and sent me home. I do not at all remember what went on in this house Monday or Tuesday even though I was here and on the couch. My husband slept on the floor by my side.

I dont even remember how I got home from the hospital I was that doped.

The good news is that I know a lot more about black widows than I ever did before.

The bad news is that the patio still needs to be cleaned.

Tuesday, September 21, 2010

Wigs and Girdles

I went to an outside wedding last summer in 110* humid weather. I was wearing the most wonderful dress that made me look amazing. Well that is after I put on this thing called "spanxits" and a bra called "Wonderangel" Or "Angel wonder' or "waterboob" and some pantyhose that had adhesive or lycra or something in them or something like that, I forget now. But those 3 undergarments made me look like I was 20 lbs lighter and my butt was toned and my breast look like theyve never looked before....just amazing.

Then I left my air conditioned room to get in the car and suddenly the allusion wear became a suffacating prison of mass proportions.

It was the longest wedding and reception ever held. I got many complimnets that I had never looked better. ANd let me tell you here and now.....I never HAD looked better. The undergarments were SHRINKING while on my body. This caused every fat molecule to rise up to become cleavage. I had swollen feet too, but no one said anything about them.

When I got home it took me two hours to PEEL those elastic body cuffs off me and they went shooting off into different corners of my bedroom. I remember I had to lay on the floor to get the bottoms off. It is hilarious now thinking back but that night I really couldnt get them off. The heat and humidity made them stick to me like there really was adhesive in them.....and dancing around on one foot and rolling on the floor fighting them off didnt exactly make for a great mood so I tried to forget about it.

Till someone asked me yesterday how it felt to wear a wig.

And I thought;
Just like wearing a girdle on a hot humid day.

Only on your head.

Thursday, September 16, 2010

Back to School Nite

This is my son's school's back to school nite. The night you shuffle from room to room with a few hundred other parents and listen to the teacher's class rules for 12 minutes and then shuffle to another teacher's room. I go every year and tonight will be the final "Back to School Nite" for me.

It is funny that it is also the night you scope out other parents and see how they have fared for the year. Have they gained weight, changed their hair, gotten skinnier, lost more hair, gotten a paunchy stomache. Its human nature to measure ourselves against the current society we are in.

I of course will be sporting store bought hair and less eyelashes and eyebrows. I will have to find a great lipstick color to contrast.

I will be reflective tonight. Thinking about all the past "Back to School nites" and thinking about my son going off to college and how the whole dynamic of the family will shift. I hope I wont feel useless and put aside. I take all these "mommy jobs" pretty serious.

Thank goodness for technology and Skype and texting and cell phones. I dont know how our parents did it when we flew the nest. No contact. Just pay phones.

I wont miss "Back to School Nite" and all its scoping out of parents and teachers and snickering and "looks" but I will miss the feeling of purpose and connectivity I feel when I go scope out the "other home" of my son for so many hours a day.

*sigh*

Thursday, September 09, 2010

Off Topic

This is completely off topic and random but I was thinking this morning that its completely odd that this Rev. Terry Jones really got his hands on that many Korans to have a burning.

Did he go to the nearest mosque disguised as a radical needing a bunch of Korans to give away? Did he go to the Imam and say, "I have a burnin yearnin to read?" hahahaha pun intended.

Really, he could be burning bogus Korans, just used old books. Endangering the troops in Muslim countries over a "Huck Finn" and "Moby Dick" burning.


His energy and passion and desire for hooplah and revenge couldve been used for greater good. Not blowing a bunch of money for a book burning that wont bring about anything but more hatred and war seeking radicals a great example for more recruitments.

What happened to turn the cheek? Love thine enemies? What is Koran burning going to get us as a nation in the end? Freedom of speech? I dont think this is what our forefathers meant. I just really dont.

Wednesday, September 08, 2010

Shiney head

A spider bit me on the head.

On
the
head.

My nekkid head has a bug bite on it. Its like the red circling light atop a light house.

I had the wig on but when I itch my head it wiggles the wig.

Switching to hat/scarf combo for today.

What a funny way to start the day!

Saturday, September 04, 2010

Support Systems

Last night someone tapped me on the shoulder. I turned around and smiled at a woman I didnt know with several kids. Her daughter is in band with my son but I dont know her. She pointed to my hat/scarf combo and asked me if I was going through therapy.

I replied, "yes, chemo-therapy." This lady tells me that she is a two time cancer survivor and she had a very amazing tale of survival to tell! She was encouraging and inspiring, and very sweet. Then other people apparently listening in chimed in with experience with their aunt and mother in law going through radiation and chemo.

Thats what happens when you have cancer. Everywhere you go you find out that nearly everyone has had cancer of some type or been touched by it some how. And people want to reach out to you and tell you of their story. Whether it have a happy result or an on-going heart wrenching tale, people touched by cancer have a compelling need to reach out.

This Two Time Survivor (yes I'm bad with names)lady from last night was saying to me that its all about the Support System and if we have a good support system we will do great. I wanted to argue with her that it comes from with in. All the support in the world is not going to help if you arent determined to play this drama out a certain way. Support is the bonus that drives you on. But then I kept my mouth shut the whole rest of the time she was talking mulling over the thought in my head.

What really is more important? The Support System or the Inner Drive to "Get'er done"?


My husbands keeps telling me "You gotta fight this". That is his mantra through this whole thing. "You gotta fight this". I'm not sure what I'm fighting and what "this" is but I take his quote to mean that I should not give in to the overwhelming sense of hopelessness and just give up and not want to go to the doctor or chemo therapy and just let cancer take over my body.

I also understand that he is frightened beyond words and he doesnt know what else to say to comfort me. His other oft repeated words in my ear is "This is so hard what you have to go through". He is not able to say any other comforting words but these two phrases and I am fine with this now.

At first I was angry and wanted him to cacoon me and comfort me and act like a mother hen and make me chicken soup and write encouraging notes like I do for them when they are sick. But one day after I saw the look in his eyes I realized that he must repeat in his own head minute after frightening minute," She had better fight this" and "Oh my god this is too hard what we have to go through right now, I dont know what to do to fix this. She has to fight this." After all my mind would be frozen if this were him or my son so I can understand this now.

How he supports me is by shaving my head, he took care of the jackson pratt drainage tube after surgery and he has given me all the shots to the stomach and arm that they asked him to. And he tells me to be comfortable and go out with a naked bald head and not cover it up with a sweaty wig or hat and scarf combo. I wont but wow how nice of him to say. THAT takes courage and is truly supportive. That is admirable and makes me grateful. I dont know if I could return the favor.

My son is my cheerleader. Personal cheerleader and the reason that I fight every day to get past this and move on in life. He is amazing. He sat with me each week to go get blood work and then each Wednesday in the chemo room he sat for 6-7 hours with me. Cheering me up, keeping me distracted, playing cards, hangman, dots or puzzles together. Driving me everywhere and bringing me copious amounts of gatoraide, gingerale and crackers. He can microwave a hot pocket like no one else. He constantly texts me to see how I'm doing and he says the perfect words at the perfect time of comfort and understanding. The child is such a help to me. I sit here typing this with tears welled up in my eyes of gratefulness. He is joy to my heart.

Friends and Family: The funny thing about friends and family is that they have all taken on different roles in my life since I got diagnosed with cancer. The ones that were constant in my life became distant, the ones distant became close and the aquaintances I've barely known have sent cards weekly and messages and really amazed me with how its all been mixed up and everyone together has been encouraging me through this. The ones touched by cancer before have been really prolific in their support. And the funniest thing is that my Mom and Dad text me constantly and they have a Facebook account and can see how I'm doing.

All together my Support System is getting me through this but most of the hunkering down and getting through each day is done by myself to myself. I talk to myself, and cheer myself. Mostly lecture myself. I allow myself a few minutes every day to have tears and feel bad about all the ickiness of cancer and then the rest of the time I do as much as I can to lead a normal day to day life. I smile a lot, joke a lot and try to jolly each day along. When I have to lie on the couch and moan I do. But every other time I strive to find the joy.

The other day I had an outright temper tantrum. I had such a mental block about going again to chemo and I just really cried. My son and husband rushed from various parts of the house and said at the same time, "Whats wrong?" and I said "I dont want to go tomorrow" and I burst out bawling. I was so sick still from a new medicine they gave me for one of the side effects and I was just feeling too weak to go get more chemo... My husband sat on one side of me and my son sat on the other, My husband said, "Honey you have to fight this." My son kept patting my arm and put his arm around me. My husband kissed my bald head and they both just sat there watching me bawl my eyeballs out. They looked at each other over my head with huge owl eyes and then back down at me.

I stood up and shouted," I KNOW I have to go, I Know I WILL go, Its just that I have to cry right now to get this out of my system so I have the STRENGTH to go ."

Thursday, September 02, 2010

Clowns

Yesterday was a chemo day. In the chemo room. I have nightmares and flashbacks during the day now about the smell of the chemo room. I imagine that will stay with me a long while.

The first time I saw the chemo room I had a melt-down. I ended up there by accident when I first was diagnosed with cancer because the clinic sent me to the wrong room for a pre-chemo procedure and they finally gave up figuring out the mistake and said to go see Nurse Janice and she'd figure it all out.

Nurse Janice was in the chemo room.

I breezed into the room un-knowing what room it was and what I saw hit me between the eyes and made me loose all thoughts in my head and made me stutter and then weep. The nurse grabbed my hand and said, "Are you ok?" and I gulpinly replied, "I have so much anxiety right now, I dont know why, I'm sorry." and she said while patting my hand," Everyone does the first time they see this room, it makes it all a reality for you."

This is the reality of what I saw:

Imagine a small room. Living room size. It has the typical blue green clinic industrial tiles. Non shiney like it has been neglected for a while. Around the room are 10 green plastic reclining chairs. Shiney so they are easily wiped down. The recliners all have a little shelf on the right arm. It extends out about 10 inches from the right arm. This has a flat small pillow with a disposable towel on it. This is where you put your arm to receive the I.V.

To the right of the recliners are imposing I.V poles, computers, monitors and waste bins. One waste bin per chair. These get filled up fast with various flotsam and jetsom that gathers with the care of the chemo patient.

On the I.V. poles are many bags. Various colors of medicines getting ready to be interveniously pumped into bodies to make cells retreat and die. Poison really. But poison invented purposely to kill the cells that make our bodies die faster. I am shocked by the various colors. Neon orange, cherry punch red, Molasses brown, milky white, corn syrup clear, and they all hang atop the poles with tubes connected to the patients.

Besides the overwhelming view of seeing 10 chairs, poles, violently colored medicine is hearing the beeps and chirps from the monitors and blood pressure machines and the IV machines..It first sounds so loud it rushes through your head like a locomotive. THen you see the patients and you loose all train of thought completely.

Chemo patients come to the chemo room because they have to. They are in various stages of cancer. They ...wait. why am I typing "they" like I have no part of this?
We. We come to the cancer room because we have to.
We are in various stages of cancer and we all have a different type of cancer. And its men and women mixed.

The first time I went to the chemo room I saw the 10 recliners full of various patients and my head exploded. My heart broke. I saw very sick people. People reclining with several blankets covering them sleeping with their mouths open and I thought they looked dead. Some were bald, some had a little hair fuzz, some had hats. Most were pale or had facial peeling of the skin. But they all looked helpless.

The helplessness made me loose it.

To the right of all this reclining is a nurses station. Small desks, Computer monitors and straight ahead is a small window. Through this window you see a darkened room with pharmacists hunched over desks and some are busy in the back but you cant see that far to really tell what they are doing. This is the hub of chemo mixing. All medicines and orders come from this window. The people in that window are the masters of the poison that is going in our bodies in the chemo room. Its a scarey room. They have to wear protective gear and goggles. Thick special gloves.

We have a special bathroom behind the nurses desk. When having chemo therapy they give you an IV bag of just saline fluid first and they also "flush" you in between each medicine too. Thats a lot of liquid. There is a regular chain of us pottyers. Its comical if someone goes to the potty before we can disconnect and get there..we get like 5 year olds and say" Whose IN there" " Oh my I hope they HURRY".

To go potty you have to get yourself hoisted out of the green shiney recliner and reach behind the chair making sure not to dislodge the IV from your arm or hand and unplug the IV monitor that is attatched to a pole. You have to then shuffle to the bathroom pushing your IV Monitor pole with your IV bags on top to the bathroom and manage to go to the bathroom one handed.Not easy but doable.

Seeing all this going on really did make my cancer and what I was facing a reality. It made me go to my car and have a melt down and cry and really face what I was to become. A helpless chemo patient going to the chemo room.

But not helpless. It made it so much easier the first time I did have to go to the chemo room to get chemo. I was prepared. My head was wrapped around the reality. I also decided to call it the Party room and I go every time armed with my sense of humor and my gift of gab. I decided not to be helpless but be helpFUL. I make it a visit and got to know all the seat mates and I make the nurses laugh.

The nurses. The chemo nurses deserve all the praise and hugs and love and any raises or benefits they get. TO coin a oft used phrase; they are angels on earth. What a tough tough heart wrenching job they have. I cannot say enough about them in praise of what they do for us.

So I make them laugh. Compliment them. Make sure I say thank you for each chore they perform. Make sure they know that I'm glad they are there. Make sure I'm appreciative.

Having chemo with grace and dignity.

Friday, August 27, 2010

Laughter


Last week was a "good" week. That means that I'm having a relatively normal week free of most of the side effects of the chemo meds.
(I am refusing to type chemo"therapy". There is no "therapy" to chemo; its basically poison.)

On a good week I try to catch up to household chores, bookkeeping, sorting, organizing, thinking and do some fun things like painting, crafts, and go out to do something that is outside this house.

Last week on my "good" week I encouraged my family to take me to the Fair. Ok, well lets be honest here and say that I did cry a little and used the "take the sick girl where she wants to go" card. My husband is not so keen on the Fair and my son was only eager to go once I said he could invite a friend. Whatever works. I was desperate to go see some animals, especially piggies and eat Fair food.

It was the best time ever. I spent so much of it laughing. It was the perfect way to spend a day that I felt good in!

Laughing makes me forget.

We went to a magic show. I laughed at the kids watching with huge eyeballs and smiles. Nothing cuter than watching kids amazed by slight of hand. And the poor magician was battling the heat and a stiff breeze and even he was pleased by being rewarded by the audiences pleasure. More smiles.

Then the Turkey Races. Oh lordy this was the funniest thing I've seen in a long time. Young turkeys let loose from a pen to chase a remote controlled truck full of turkey feed. Of course the music and announcing and the audiance interraction made it the most hilarious show ever. I laughed and laughed and laughed. I must've taken 50 pictures. Then they had a big huge ol Tom Turkey just ready for the butcher block come strutting out and make a loop round the pen and it just made everyone bust up laughing.

Then we got some big polish sausage and Italian sausage sandwiches and laughed at ourselves with the grease dripping chinny chin chins Then the napkins started blowing all over and we tried to rescue them but our fingers were sticky from funnel cake and we ended up chortling and laughing over that too.

My son got picked to be in one of the shows on the free stage and we laughed at his antics up on stage for another hour and then laughed more at the dvd we bought of the experience.

We laughed all day.

Then at the end of the day, just before going home we finally made it to the Pig Barn. Here at last were my piggies!! I just love pigs! I had a pet pig when I was a teen. Rescued from the auction house. It was a runt and I had to feed it with an eye dropper til she got strong. I named her Gertrude. I used to take her for walks. Honest to God I did!. I loved that pig. Well.....til she got big and grumpy and tried to bite me once. But thats what happens sometimes when ol girls get big and fat and lazy. They get grouchy about it. heh.

But what was special about this time in the Pig Barn is we got to see NEWBORN piggies just freshly born. It was so sweet and what a special end to the day to see those wee piggies just fresh from the mamma stumbling around making their way through the fresh shavings. Just too sweet!

I felt extra good the whole next day. I was just full of joy and felt better than I had in a long time.

I'd say laughter IS the BEST medicine!!

Friday, August 20, 2010

Cancerous Humor


When I found out that I had cancer, I was devestated. Thats normal. But then I started finding the hilariousness of some of the aspects of it all.

That bothers some people.

They want it to be serious and somber and I suppose kind of grief stricken. After all it certainly IS a serious and somber and grief filled scarey prospect. Cancer.

But then I just started finding a lot of it funny. Like the Chemo room and how I turned it into a party room.

Or when I had only 12 hairs left on my head and I kept wearing hats and I would tease out those 12 hairs and point them out to folks so that my hair didnt feel abandoned.

Or the night at midnight that my husband and child shaved my 12 hairs off and made me into a velcro head. And then I realized my head is shaped like a turtles. I thought I'd have a swan neck and an oval head with stately forhead. Nope. low forhead and squarish head with bump in the middle top. Of course I'd have a thick neck and a squarish round head. Goes with the short waist and square hands I have.

When I see my self now in the mirror I have to laugh. Its the most rediculous thing to see your own head naked.

I of course have week moments. I cry at least once a day. My resistance is lowered and I feel so not in control of my body, my life, my symptoms and it all is a snowball of disgustingness. But I only allow myself that 5 minutes and the rest of the day is normal, or as normal as my normal right now can be.

The funniest part of all this is the neighbor kids trying to catch me off guard so they can see the naked head. I dont wear my wig at home. I have hats on every door knob in the house and I have a scarf by my apron in the kitchen. I can jump to that door knob and slap on that cap faster than the old gunslingers could draw their guns in the ol west. Makes my son laugh every time. He likes to tease me by saying one of his friends is at the door and can he come in. I jump to knob and slap a cap on and then get mad and flustered and ask him why he let them in and then the little imp will say, "oh no, I meant IF they were going to come over could they come in?" little brat o mine. I'd so do it to him to and he knows it.

I'm trying to show people that we can still find humor in our life. I'm teaching my friends and family not to tip toe around the subject; its ok to ask how I am and then talk about regular stuff. Crack jokes and tell stories.

Or ask to see whats under that sopping wet, dripping with sweat, furball of a thing I wear on my head most of the time to make everyone forget I have the head of a turtle.

Wednesday, August 18, 2010

Loss

Well I learned the big lesson in the chemo room today.

Dont ask where the missing people are. I assumed the ones that didnt show were done with their sessions of chemo. wrong. The two I asked about that brought so much joy and energy to the room were not there last week nor today.

"Where is Karen today, I havent seen her in a couple of weeks", I say jauntily.

"Oh and that other lady...what was her name, oh she makes me laugh!!"

The nurse goes to the bullitin board by her desk and untacs a paper and hands it to me.

My heart dropped and I just couldnt breath for a sec. Its a copy of a person's funeral program. Karen's funeral was Sunday.

But she didnt seem sickly. She seemed so full of life.

She was a jolly soul. A real firecracker. A fiesty lady full of energy and a twinkle in her eye that you just knew was waiting for myschief. She was 60ish. She brought the sun and moon and all the stars, and a little bit o' the devil into the room when she came to get chemo.

She had colon cancer. You dont think of women having colon cancer but so far in the chemo room all the colon cancer cases but one that I have met have been women. Pretty young too. In their 20's and 30's.

Tears rolled down my cheeks and I hugged the program for a few seconds not breathing.

And then we did her right by talking about her in the chemo room all around. She had skipped a week of her chemo a few weeks ago to go on a nice vacation. She had had so much fun and she came back full of energy and joy talking about seeing all her friends and relatives on her trip.... Karen will be greatly missed.

So then I asked, "And Miss Mary?" "Is Miss Mary ok?" and the answer was that she is not doing well at all and it will be a miracle if she makes it back to the chemo room. What a lady Miss Mary was!!! SHe also was full of sunshine and encouragement. She was like the camp leader with her conversation skills and cheering us on.

I have such trouble getting an IV. Small veins and now they are collapsing and she used to shout accross the room, "Dont even think about it miss PixieLyn you just think about all that shopping you and me is gonna do later", even tho we have no such plans. She would make up all kinds of fun things to go do after chemo so I wouldnt feel so bad. She sews all her own clothes....fashionable lovely clothes that are so very nice. She came to the chemo room all dolled up. She says it is because she is determined to put her best foot forward and not worry about that its the ugly ol' chemo room. I hope the miracle happens and I see her walk in the ugly ol' chemo room again.

So lesson learned; DONT ASK and THEY WONT TELL.

Sunday, August 15, 2010

Prayer Shawl


Perhaps the first thing people do when being diagnosed with a life threatening illness is to turn to God. Start praying like crazy to make up for being busy and not paying enough attention to their devotions.

Perhaps bargaining and praying make them feel stronger and less helpless. It wasnt me. It wasnt in me to declare my devotion to God in exchange for my health. I also didnt "why me" it in the beginning either.

I mean; why NOT me?

I'm just a small cog in the larger machine of cancer ridden humans. It happens. It randomly happened to me. Period. Deal and move on.

For sure I wasnt about to beat my fists to my chest and start backpeddling my laxness in prayer by stepping it up and making it up to God in hopes that he'd grant me special healing powers.

The first Get Well Gift I recieved was a Prayer Shawl.

It came with a hand written prayer. It was made while being prayed over by the ladies in the gift-givers church. I was encouraged to wear the shawl and say the prayer.

I stronly feel that the time of my immenent decline in health is not my time to amp up my declaration of devotion to God while wearing a knitted shawl like some proverbial 90 year old shivering woman making supplication to God. Why would he want me NOW. Back in the vibrancy of youth is the time to make supplication to your God, not when you are ill. So I got mad at the Prayer Shawl idea.

Instead I gave the shawl to my girlfriends mother who loved the color of the shawl and she gets chilled in her assisted care living home.

My idea of making up for being busy in my life and not attending to the needs of MY humanness?
I turned to crafts. I used to do them years ago.Before I got too busy to do anything but work and sleep.

I am catching up on my inner creativity. Bringing some vibrancy and fun back into my daily living and encouraging my brain to have something to look forward to. My own kind of idea of what God would think was a good idea to do when ill. I have been crocheting, embroidering, painting and playing with this blog. I say God wanted us to be thankful and motivated, not regretful and guilt ridden.

Look forward, not back.

Thursday, August 12, 2010

Pink

Every since I was diagnosed with breast cancer I have become the magnet for all things pink.
Now the thing is... I look good in the color pink and have worn pink, coral, shell and fushia pink for years. I'm talking about all knick knack bric a brack pink things. Bracelets, hats, stuffed animals, pencils, pens, pins, buttons, cups, scissors and yes even white out dispensers. People, even immediate family members come up to me excitedly and profer from their hands, pockets and purses things in pink and wait for me expectantly to ooh and ah over the GREAT coincidence that they found something to represent my cancer as a gift. Its all kind of odd.

I go to the support groups and the ladies who have gone through this sit and tell their experiences of how they have collected things to represent the years in treatments and I just look puzzled at them. I sit and think that I wish I could expunge pink from the world. Pink should be a dirty colored and not a gift to sit on my desk to shout "YOU HAVE BREAST CANCER" at me. Perhaps I'm not at the stage yet where its all a lovely glow of past pinkness.

I want bright happy crap around me right now. Yes sunbursts of color to wake me up and make me smile. Wild zebra print shoes in rainbow colors. They actually have those and my brother actually bought them for me. Not to wear.

To sit on my desk and make me grin. And they do.

I have also recieved books of hope, books of anti cancer diets, devotionals and how to cope booklets in pink covers. I have recieved offers of special zen whole body healing treatments, prayer lists and church memebership offers.

I know you are thinking that I should be grateful for the kindness and loving thoughtfulness that people are remembering me and getting me gifts of cheer. But think about this.....If you had prostate cancer? I would not go out and buy you a light blue book all about hope. I wouldnt even MENTION your prostate. I would buy you a gift card for Barnes and Nobles. I would buy you something YOU like..and ask how you are doing and if you need anything. I would not assume you like all things light blue since it is the Prostate Cancer Awareness Color. Blue undies anyone? That'll help ya remember.

Wednesday, August 04, 2010

Chemo Infusion Room AKA "The Party Room"

I have dubbed the Hospitals Infusion Room where the chemo drugs are given as the "Party Room' and I tell people I party there and I wear a party hat aka wig. I have long parties and short partie depending on the amount of drugs given that week. I go weekly so I needed some jokey diversion in name calling.
Today was a long party. 5 drugs in IV bags. It makes for a long day but calling it a party somehow makes it not so bad.
I am the chatty cathy of the group when I go. It was silent and ominous and most people sleep or watch the little tvs they provide. nope I'm either talking to my son or husband that comes with me or I chat to my neighbors. Time goes by faster that way.
I have also found out what is fabulously better than any high school prank called "mooning". Its reverse mooning I guess. Reverse body end. You basically have me in the passenger seat. Pull up to red light. I turn to car idling on the right and smile. Then wink. Then wildly take off wig and wave it round and round and yell YEEEEEHAWWWWWWWWW. The guy makes a horrible face like I just pulled off a limb and then turns straight and then he squeels out when light turns green. I wonder if he had night mares? I laughed until I peed my pants. Ya gotta do something insane like that just to lighten up the trauma.
I make the chemo nurses laugh too. They have one of the toughest jobs on earth. If you dont think so you just go with a friend or relative one time while they are getting chemo and watch them. They have to be angels in nurses garb I tell ya.
I like my nurse especially well. She calls me her special baby so I think she likes me too. She is amazing. She has got to be 6'2 or so. The most beautiful dark carmelly chocolate color I've ever seen in my life and she is 62! She is like a drill sargent, a mother, and a softy angel all in one. She made me cry once in barking out orders and told me she was the ENFORCER. But then she bought me a gift on her vacation and calles me her special baby so I think she is marvelous. You need someone who is harsh and makes you toe the line when all you want to do is whimper and not do any of this icky stuff at all. Then hug you and whisper to your veins that she wants to find the right vein and not have to prick me over and over.
I have the smallest veins ever. It takes prick and prick after prick. like 9 or 12. My arm looks like a blind person gave themself heroin shots and missed and missed. Its pretty traumatic every week getting blood and then getting the next day chemo.

I need all the angels I can get.

Saturday, July 31, 2010

Chemo head

There is a little known phenomenon that comes with getting chemo therapy and that is the chemo head or chemo fog or chemo brain that you get. When you are mid sentence and your mouth opens for the next word and you just leave it open because you litterally have no idea what in the hell the next word is going to be because you've forgotten what you were going to say AND you've even forgotten what you were talking about in the first place it can be excruciatingly embarrassing.
Or hilarious.
I walk around alot in a fog. Dont know why I was going in that drawer, that room, that conversation blah blah blah. It gets irritating. And funny when you have a teenager and you are yelling and nagging and then there is a long pause with mothers mouth open and a curious expression in her eyes.
My son gets a twinkle in his eye and says "Yes?" and then I say; " What was I talking about?" and he says "I dont know?" and laughs.

Makes us all crack up.

Well we were in the midst of these California fires when son and husband are on the plane heading for a family visit in another state when the fires came OUR way and I had to pack to be ready for evacuation.

Chemo brain and packing for immenant fleeing is a sight to behold. Or not since I paused a lot.
Its a good thing the neighbor kids came to the rescue or I'd still be holding an armful of pictures I just took off the wall wondering what in the hell I was doing with them.

We are safe. Fires are out only due to the fact that my house sits on a hill. The hill is just below the hill that houses some of the larges Power towers in the state. These Power towers carry power to all of Southern California which is connected to the rest of California which makes that hill right there VERY important to the state. Ol Arnie came to town and declared he's send help. He did. To that hill. 2 giant airtankers and a giant water dropping chopper. Then the fire was out. Right as I could see it cresting the hill I live on.

I'd keep writing an update but I have forgotten what I'm doing sitting here typing for.

Monday, July 26, 2010

Fishing

My current love is fishing. When I was a child we fished every weekend. I started out last summer on a quest. Must. Teach son to fish. Must teach son how to love outdoors. It was a burning desire to fish last year.

He does anyway but I felt the need to teach him to fish before he leaves the home. His Dad is not an avid outdoorsman. So I bought 2 books, poles, nets, hooks, tackle box and we set out to fish.

2 years and havent caught anything. Of course by the time we get going and get everything loaded its always a PRIME FISH HIDING HOURS.

It doesnt make us give up though. Oh no.

I think also that we are fishing at the same dang 2 places famous for hard to catch fish. We;ve been told. But they are close to home.

Yesterday we were going to go fishing. I tried unsuccessfully to wake these two people up for two hours. Then they roll out of bed after I have most things ready and one gets on the phone and one gets on the computer.

Then I go out and get the worms and almost die of heat stroke cuz I forgot a hat and my bald head is like a giant heat absorber.

Then I come in and lie on couch and grab chest and have palpatations and realize that perhaps 5 cups of coffee while I'm waiting was not such a good idea.

We get in the car at noon.

We get to grocery store to pick up charcoal and my husband has a nervous breakdown at the price and declares that SOMEWHERE in the garage is an old bag so we MUST go home and look for it.

We got to the lake at 3:30.

Lake is full so we must wait in the que lane for folks to leave. We are five cars back.

This whole time my head is absorbing heat.....ONly its under a scarf and ball cap.

We arrive at our picnic table at 4. I'm almost passed out.

We barbeque, we eat, we laugh and have fun and then I explain that I'm gonna pass out from the heat and cant fish but they are welcome to.

6pm we leave Lake. BYE LAKE!

Well that was a nice long day for a piece of barbequed chicken and a slice of watermellon wasnt it?

Thursday, July 22, 2010

TWO Year Update Follows

Last night my husband shaved my head. Bald.
I'm now a velcro-head. Not shiney like the sexy-heads. Nope....I'm some halfwit velcro-head.

I have breast cancer. There I said it. I had surgery, now chemo and soon radiation AND chemo. For a year.

I had 12 straggly hairs left and I couldnt take it any more. Couldnt take the mangy sickly cat look. It fell out gradually. In clumps. sick. So last night I went to bed, husband still watching the news on the couch. Laid down and then got back up and came down and begged him to cut it.

It was probably the kindest thing he's ever done for me. He kindly and carefully and tenderly cut the hair closer and closer and closer. I have all stages of the pictures. I first looked unevenly mangier, then I looked like the movie depicted 'dykes' on tv. All butch with some mohawk looking style and then I looked like a baby with new hair and then finally a squinched up old man. With my glasses I look like a chimpmunk cheeked old man. I looked actually pretty with the mohawk and my son made the comment that if I were lesbian I wouldve scored me some chics with that look. Then he told his Dad he should be jealous. That started us laughing and the whole experience turned into a fun, freeing, and liberating event instead of the freakish event it really was. I mean c'mon my husband was shaving my head bald at midnight. How much more weird could it get?

I thought my forehead would be stately and tall. Nope. Its a short forehead and I look like the white version of Gary Coleman. That really disappointed me. I imagined my head so different. And its not smooth, it has ridges. I looked up Phrenology sites yesterday so I could learn about myself through the ridges and bumps but it has been debunked for years. bah!

Two years ago I had a 15 year old, now he's 17. Typical teen. Bricks in his butt, cant make decisions, wants much freedom like he's a 22 year old, rolling his eyeballs while he talks to us is like breathing. He's a good boy. He is just going through all those typical stages a 17 year old does. Wants to be with his friends all the time and when he's home he cant move. I remember well that stage. I would NOT go through it again for anything. Its the age of the major cross roads and decisions. He will be a senior. He will have a great year in school and make this passage unto adulthood very well, I am sure. I try hard not to make the C-Word the all encompassing issue around here but it has kind of taken over our life so I try to talk about it with him but let him have lots of time to have fun so he doesnt remember this year as the ruined year of his life.

*sigh*

I dont know exactly why its been two years since I've updated. Perhaps the frenetic pace of life is one, It got out of control. I was so stressed and so busy and so GOING GOING GOING that I didnt even have the time sometimes to go to the bathroom. Cancer has a way of stopping life. Cant work, cant do much sometimes but sit on the couch or sit in the bathroom sick. I have 7 good days a month. The rest is spent in quazi nausea, flu-like symptoms or just lay down wanna die bone and muscle achiness. On the good 7 days I RUN LIKE THE WIND catching up to all that I've let slack but oh it feels good when I feel good!!

I painted another mural. Last month on my good week. It came out gloriously well. Its of a hawaiian dreamy window. I just have to get some trim and trim it in like a real window. It felt delish to get paint under the nails again!! Smiles every day while I created.

Well there ya have it.
I'd write more but the chemo has thrown me into early menopause and I find my velcro head is dripping in hot-flash manna....gotta go mop it off!