Keep busy

I feel so good, in fact I haven't felt this good in a long long time. On my last check up for the hysterectomy I told my surgeon, " I don't know what you did or took out or fixed but whatever it was, THANK YOU!!" He said to his assistant in the room, "I'm picking up on some good vibes on this one." I think that's Dr speak for he could tell it was a success!!

I feel terrific, lots of energy. None of the nasty moods and depressions they told me might happen at sudden onset Menopause from the surgery, nope. I'm feeling amazing!!!

I'm loving the vegetarian diet too. I'm eating a bit more cheeses than I'd like, so have to cut back. Its just a matter of eating out really, the only vegetarian foods accessible when I eat out it seems is cheese laden pastas. Or saucy cheesy pastas. With cheese. Or cheesy casadillas stuffed with cheese. Oh they are all yummy and filling but they don't just fill up my stomach, they fill up my butt and thighs too and make me queasy with their too much cheesy. So I have to go back more to the soups and the steamed veggies I like to make and stay out of the restaurants.

I've been so busy. Painting commissioned paintings, getting a calendar ready and out there of my paintings and doing some charity work. Taking my son places and visiting and organizing and just being busy at work and home. Its all been fantastic and great. The busier I am the better.

Time goes faster, I feel better, my son is with me and is helping so it feels like old times. Happier times.

The weather has been glorious and that helps too.

I do however feel the mid life crisis feeling. That feeling of oh my gosh what is all this for feeling. A friend was talking about how they might pack up and move to this small cabin of a house not too far from here but definitely in the boonies and I kept thinking of how I'd love the peace from that. Just peace and quiet. If I owned a bazillion dollars I would do that. Well no that's not true. If I owned a bazillion bucks I'd buy a Barnes and Nobles and a Michael's store and I'd live in the book store and go visit my other one every day. I'd invite you and we'd do crafts all day and then go to my home at night and have coffee and pastries and read books all night!

THAT would be my dream.

Checkup and TMI

Well its been a long time coming so here is the update: I Have gone through quite the year since last December when I last got off the Radiation Van and walked to my car for the last time. Its hard to believe its been a full year; it seems so long ago.
Time has gone by swiftly.

I have had several great checkups with all good news: no breast cancer signs!!

This is the news everyone wants to hear, especially those asking me "so How are you doing".

But the journey hasn't been all that smooth and I still have long strides ahead.

Let me explain:

My last chemo session was in May; just a week before my son graduated from high school. It wasn't all the chemo meds the last session; just one and it was the mild one that only gave me allergy type symptoms; headachey, sinus pressure, runny nose, bloody noses but nothing severe or nauseous making. I was so relieved to be done!!

It was joyous saying good bye to the nurses and fully embracing the finality of getting through a years worth of chemo and radiation!!! VICTORY!!


But there was so much to be done for graduation and my family all arriving to visit that I had no time to relax and rest and just absorb that I was done and I could heal.
The flurry of the May/June's activities completely wiped me out and I was whipped and sad and really really wanted to savour the summer since I really hadn't been able to enjoy anything for so long and I wanted every single last minute my son was to be home to be memorable. Basically I wanted to float through the summer and get rejuvenated.

Well that wasn't to be.

I had relatives and staying visitors all the rest of the summer right up until a few days before we had to bring my son to his dorm for his new adventure. So many people, so much to do to prepare; so much to do as hostess; so much activity.

I was really seething inside and finally exploded with anger one night. I actually felt menopausal with my instantaneous eruption. But I hadn't had any kind of a cycle since starting the chemo so that was out of the question since my oncologist told me that I probably would never cycle again and I should desperately hope not to since that would be hormonal and show that my body was developing all those female hormones that I wouldn't want since my cancer feeds on hormones. It would bode bad things. But it sure felt like that. It felt like PMS. That out of control unreasonable fury.

I continued to feel angry/bitter/overwhelmed and completely over my head with resentment while packing my son up and doing all the last minute worrying, sorting, packing and organizing. Dealing with visitors in and out. I was really out of sorts about it all.

The day we moved my son in to his college dorm room I was a mess; Oh I didn't show it on the outside that day; but inside I was a mess.

It was about 107* with a high humidity index where his school is. The emotions and heat and exhaustion was overwhelming. I thought I was just way exaggerating the moment and really thought I was going to have a panic attack. Just before we left to take him, I started a period. I hadn't had one in a year!!! I surely was experiencing PMS!!

Needless to say I was freaked out and panicked and the day was spent in this emotional haze that cant be explained. I didn't say a word.

I finally broke down and told my husband on the way home.

I called and made an appointment with my oncologist after the weekend and of course he shook his head and said this was not good. It prompted him to send me for genetic testing which is this amazing process by which they take a blood sample and send it away to this testing laboratory. they actually extract DNA and test it for all the genes and chromosomes that predisposition people to some disease; in my case only hormonal cancers.

Yes it came back positive and that news has sent me on a whirlwind of doctors visits; specialists and yadda yadda yadda.

Boil it all down to this; I tested positive for BRCA 2. Which means that I am predisposed to certainly having breast or ovarian cancer. Well I already had breast cancer so that means that within 5 years I most certainly will have it again.

I had testing and biopsies and yes, my body miraculously healed itself and fought to start producing again.


Prescription: have all areas removed that are certain to get cancer.

Yes that means ovaries, fallopian tubes and breasts.

I had the hysterectomy 3 weeks ago. It was a smooth and easy surgery; it was all done with three small insicions and I am doing great. Healing was easy. When you take the ovaries out it throws a body into instant menopause. I will be ok with that. During chemo it does too so I'm pretty well accustomed to the symptoms. It'll be ok.

Now I just need to recover and figure out which route of reconstruction I want to do for the next stage of surgery and then schedule the next one. I am so not certain how I want to proceed with reconstruction and my brain balks at even thinking about it.

But yet this is all I think about.

I wake up in the night thinking about it.

I cant stop thinking about it.

It is too huge for my brain to absorb.

I don't want to be thinking about this.

But if I do this it reduces my chances to less than 2% of getting any of these cancers and I have to do it.

So I must think about this; and I must do this!

I want to see my son grow and flourish and have children and I want to retire and go on old peoples cruises.

I want to clean dentures with those fizzy pills and pick out tennis balls for my walker.

I want to join the mall walkers senior club so that I can go have coffee and cinnabun every morning.

I want to grow old and die in my sleep naturally with my kids, grand kids and great grand kids around me.

Relay for Life

Today was Relay for life in our local town. I got a letter a few months ago declaring it was coming up and to gear up the local American Cancer Society was hosting a dinner for Survivors.

I didnt want to go but a fellow radiation van rider asked me if I was going to the dinner as she was going so I forced myself to go. She never showed up but my son went with me as a support.

It was a really lovely evening with raffle prizes, a nice pasta dinner and they did a wonderful job on decorations and so many volunteers and helpers and donations that you just felt really overwhelmed with gratitude and hope.
Which is the purpose.

Then today was the Big Day. Relay for Life. Started by a man who walked around a race track like at a track meet to raise money that other folks pledged to him if he walked this track 24 hours. He donated all the money to cancer research. That is what started it and now its swept the nation and there are teams of people that go and collect donations and then walk the track. They set up booths and donate baked goods and homemade craft items and donate that money too, its all so generous and wonderful of so many people.

Before the teams begin their walk, they have first a Survivors walk and then a Caregivers walk. They give all the survivors a purple t shirt and we walk once around the track. On the next walk around, our caregivers join us and we make one more round of the track. All the while folks are cheering and clapping and calling out encourageing words. My son walked the Caregiver lap with me, he gave me such a warm and really wonderful heartfelt hug when it was over, one of those hugs you will never forget.

It was one of those really tight squeezes that last an extra moment and in that hug was all that he meant and all the words he couldnt say at that moment. I could feel his love and encouragement and how proud he was of me. He quick pecked me on the cheek and in the moment it was over and he went scampering off to go meet up with his friends to go pick up their prom tickets. I was so happy for that typical momemt. It means life is good, normal and all is healthy and on track.

They had a special breakfast for survivors. Local restaraunts all donate food and that was a nice treat and they give everyone raffle tickets and during breakfast they raffle off gifts. Gift baskets, homemade pillows, inspirational books. I really want to put together some baskets for next time, they were so fun. I didnt win anything but my seatmate next to me did and she gave me a book out of her basket, its called Chicken Soup for the Mother with inspirational stories in it.

The energy was good, the whole thing was uplifting.

It just filled me with an amazing boost of energy, of hope and of such gratefulness.

It was a glorious day.

Stress Reducer

This following tale is not one I'm proud of but one I need to get off my chest.

It reflects poorly on me but it was a really important step in continuing my life.

Every since my child could talk he wanted a dog. Pleaded for a Scottie dog. His Dad doesn't like pets and said no......Until one day we were coming out of the shopping mall to leave a little cute girl with a cardboard box of dogs begged us to take one of her cute puppies home because her Dad told her she couldn't come home until they were gone. The dog grew in three months to a giant Rottweiler/German Sheppard mix as best as the vet could tell. It knocked us down and tore up trees roots and all and my husband gave it away to the lawn service guys who loved that dog. They have a ranch outside of town and wanted a big ol guard dog. Happy ending for all.

Years went by and my son continued to beg. He wanted a real dog. He said real dogs are like Scottie dogs, small and you can hug them. He begs and pleads and his Dad practically turns purple each time he asks he just wont hear of it. Then friends of ours say that they found a dog, an adorable sweet dog wandering in front of their home and its trained and sweet but they already have dogs and their big dogs don't like the little dog and they have to keep them all separated and the husband says to take the found dog to the pound. On the final day of the dogs life she begs me to go get it. I beg my husband and he says finally with huge sighs that I may go to the pound and get that dog and ONLY that one dog. I go to save the dog and it turns out that our friends husband relents and she already has picked it back up.
But OF COURSE they show me the other dogs all locked up and I swear to you by all that is true that they look at you with these huge "save me" eyes and you HAVE to take one home if not two or twenty. I bent down to pet them and this little black dog leaps right into my arms and rubs her nose on my cheek like kisses. We bring her home, and she proceeds to turn into a Tasmanian devil and rips our drapes to shreds, tears up the couch, ruins the carpet with determined defecating with vengeance. We brought her to the vet and the vet says the dog must have been abandoned and it has issues. You think??. The vet advises that we get one or two more little dogs to help this one live in a "pack" and she would be calm and relax and not want to "get back" at humans for the past. My husband about freaked out and demanded we find a new home. I did. I gave it to a family who had two little dogs and were looking for a third. They loved her and it was a good match. Happy ending for all.

Years go by and soon my son is begging again. This time I really want another dog too, I just really missed the last one and I had loved that little black dog even if she was a devil in cute doggies clothing. So I chime in. This time surprisingly my husband is not as adamant but he is weary worn in his listening. He says the only dog he would even consider is a white dog. A Maltese. We went to every rescue we could to search. We scoured the newspaper and penny saver ads. We became hunters. My husband went out of town for a couple of weeks (this is 5 years ago) and we see an ad in the paper for the PERFECT dog! A new puppy this lady had to get rid of as her dog had puppies and she couldn't keep them and had one left.

We fell in love with this little ball of white fur. It was really young and cute and we carried it in our arms. I spent hours training the dog, and took it to puppy class even. He was a really quick learner. But he had hip and knee problems and then allergies. Pretty soon I was taking the dog to the vet every three months for shots and medicine and pain pills. Then we spent two years trying different dog foods to try to modify its diet because it was allergic to everything, even rubbing on our clothes would make him break out and we discovered he was allergic to fabric softener. Because of this he was a miserable dog. He was grouchy and didn't like kids. Didn't like other dogs, didn't like to be petted anywhere except on the top of his head and his belly scratched. Anywhere else and he'd likely bite you. He bit me hard once when I was putting medicine on him and after that I was leery of him. Its never a good thing to hate your own dog but that is exactly what I did. I hated that dog and all the fussing it took to care for him. My son never liked the dog to begin with and my husband felt that we betrayed him by getting a dog while he was out of town. He said that just because he said he would consider that kind of dog didn't mean we could have one without him being there to approve.

So for 5 years I insisted that we care for this mess of a dog with its poo balls, and diarrhea and runny eyes and biting teeth and red oozing skin because it was a responsibility and I just couldn't bear to again give another dog away like we were failures. So we kept it. Kept paying the vet to give him allergy shots (2$ a day) and special food and special salve and we got it to where with much care we managed to keep him going without all the sores and misery, then I got cancer and they told me the one unifying thing in breast cancer studies is the amount of stress the women are under.

With a heavy heart I determined that one of my greater stresses of life was this dog. I finally conceded that its not necessary to torture myself or this family any longer with the misery it is to keep this dog.Its been a year in trying to find the perfect home for him but finally a family looking for a little dog called and we met them and we told them all about the food and how they would have to care for him and they really didn't mind. We gave them a 25lb bag of his special food, his special bed, his salve, and all his toys and things and bid him well. I told them that if it didn't turn out to be what they wanted that they would have to be responsible to pass him on or bring him to a shelter. Breaks my heart to admit that. I am the rescuer not the relinquish er.

Our family life has improved 1000% without the dog. The amount of relief is palpable. Every day is like a joy to wake up and not have to deal with that grouch. As a huge pet lover it was really sad to have to realize how much I resented him.How much my husband hated having that dog and how much happier we would be once he was gone.

I feel like I've let the pet lovers down. We havent really told anyone, just whomever comes over and asks what happened to our dog. So there, now you know another reason I'm enjoying life now. But its with a bit of guilt.

And the lesson learned? Third time is NOT always the charm.

One Year Today

No one in my family or even any of my friends realized it but today was one year since my surgery to remove the cancer.

Its been quite the journey. Not a bad journey, not really a good journey but a life changing journey to be sure. There were devastating moments and there were some sick moments and a few pain filled moments but the things that I thought were going to be the worst weren't and the things I thought would be no big deal turned out to be bigger than I thought. Most moments were ok. I guess that is the surprise in this cancer journey. I had little physical pain....mostly overwhelming exhaustion.

My prognosis is good, my tumor markers are good, I'm almost done with going to the chemo room and getting my infusions....I have two sessions left. I'm so happy to hear the great news and yet.......There are still moments where my heart freezes and my eyes get wide, a flush of searing heat goes through me and I'm filled with terror. Terror of the 'what if'. Then the moment passes and life goes on just like a swift river and I have to run to catch up and I forget about the terror. I have been really redirecting my mind when it wants to dwell on the what ifs. I cant live a life filled with terror.

But mostly......mostly this journey has filled me with the power to voice my desires, my wants, my needs and to speak up when I feel slighted, or wronged and that is the surprise to me. I used to be filled with gumption as they used to say in the old days.......then I got passive and became almost a martyr with my overwhelming desire to avoid confrontation. Over the years I changed from brazen to whispy voiced and then I carried life's responsibilities like burdens; well more like stones upon my back.

Weary with the crushing responsibility to do everything for everyone every day and all the time. Rushing here and there, going and doing and then running and rushing and just running myself ragged all in the unrealistic wish to be the perfect wife, mom, manager, bookkeeper, cleaner, washer, volunteer, working woman, partner, lover, listener, and woman. I juggled so many things like cooking old fashioned meals every night and yet rushing home to excersize to look well and being a cool mom and have
good balanced homelife and a house with with discipline and yet wholesome attention doing all the work stuff and school stuff and still be that old fashioned wife who was above reproach. And I did it all very well.
I was proud of how I managed it all.
Proud of my crazy blurry life.

This journey into the world of cancer has halted all that in its tracks and made me voice to others that that life I led is just ridiculous and got me NOWHERE and if the risk is to loose my life than I want to live life in a relaxed normal manner that lets me BREATH. Do you know that sometimes I wouldn't even get a chance to go to the bathroom all day or two days until I'd crawl into bed at night and be sick to my lower stomach and realize I really needed to use the restroom? That kind of living is nuts. And I lived like that and STILL felt like I wasn't doing enough.

Its taken one year for my family to realize that I'm not like before. They still want me to be. But I'm not going to do that again.

Do you know what it was like? It was like I was in one of those whirlpooly things in the drain when you let the wash water out in the sink and its twirling down the drain. But cancer was the stopper and it stopped me from draining away and now I have a chance to live life nicely. In pace. With grace and peace.

I've been painting and relaxing and taking naps and watching TV and cooking and meeting friends for coffee and lunch and taking time with my son. I even signed up for a class at the local craft store and paid for it and went and thoroughly enjoyed myself. I've gone to a jazz music night with a friend. I went and had a makeover in a department store cosmetic counter. I have been easing back into real living and I don't intend to stop. I will even insist on growing some vegetables this summer!

Next on the agenda is to get my son properly graduated, enjoy the summer properly and then see him off to school and then figure out what I want to do with the rest of my life.

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.

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?

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.

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.

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.

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!

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 ."

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.

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!!

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.

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.

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.

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.

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.

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.