Hand grenade and Drain tube…

I thought I was well prepared for my surgery on 9/11…and…I kind of wasbut I have never had a surgery where “it wasn’t done after the surgery” That might sounds weird… what I mean is;  Usually after a surgery; You’re done! You’re in recovery! But this time when I woke up, I had 2 tubes attached to me. And it felt like I wasn’t done…

MY MIND HAD REGISTERED THE INFORMATION. My surgeon had told me exactly what was going to happen…but until you experience it …it’s just words…bla,bla,bla…tubesurgeryafterwards…bla, bla…just words… I remember saying “Yes, I get it” “Aha, I know…” “I understand…” …and that is all true…but the experience is what’s making it real. I knew I was going to have a drain tube attached to me, and I knew I was going to have this “thing”, looking like a hand grenade, with pain meds, attached to me. I knew it…

 I can’t recall when I first paid attention to my new “best friends” Mr. Q.(pain pump) and the Tube (drainage)…

Maybe it was when I first had to go to the bathroom (or I was told to go to the bathroom) the nurse showed me the black bag I had beside me. It looked like a hand grenade (as I was told) in a bag (called ON-Q) It’s a balloon type pump filled with a medicine to treat the pain. It blocks the pain in the area of the procedure. Very nifty! ”Here’s your little bag. Hang the bag over your shoulder…It will disburse pain meds every hour”. Even though it was a little scary having something hanging from your body…from your skin…freaky! and annoying (don’t know how many times I yanked this tube by mistake! Yikes!) “Mr. Q” became a good buddy though! Thank God for him! I only had to take extra pain meds at night. After 5 days, Mr.Q  was dead, empty…flat as a pancake. It didn’t matter how much I shook him, gave him resuscitation, mouth to mouth – He was dead! I was sad…

My other ‘best friend’ the Drain Tube. At the end of the drain tube is a little plastic bottle that fills up with your inside guts…lol…not really…but it drains fluid from the surgery area… The first three times the nurses helped me to empty the plastic bottle. Thank God! Which was about half filled with body-red-liquid. It was not really the color of clear blood, but more a mix… like muddy-obscure liquid. Hard to describe. They showed me exactly how to empty the bottle… How to squeeze the plastic “ball”. Empty it of air. Put on the top, so the squeezed bottle would expand and suck out the liquid from the drain tube into the bottle…All of this had to be documented to a “Drainage Record Sheet”. Check!

It was leaking a little bit from the incision area. The Doctor said this was normal. The first day, and night, it leaked through the dressing (called Dermadond. It’s a superglue for the skin), through my bra and onto the bed. I was a little nervous of going home with this leaking…thinking I would wake up in a pool of blood…Or (worst case scenario) I would totally be drained of all my blood…a slow death…This is how it’s going to end…I know – Very Dramatic! He,he,he…

It was not ”The End!’

I learned I was going to get Home Care for a week after the surgery. I gladly accepted. I asked my neighbor, Joan Norell, (a respiratory therapist) to be here…I just felt more comfortable having a second person present.

The nurse was an elderly woman with many years of experience. Very sweet.  She looked at my surgical area, the tubes, the Dermadond and the dauby- mess underneath the plastic…I got the feeling she didn’t really know what to do… (What???) She didn’t have the right equipment with her (had not received the correct instructions for me, specifically) She looked, and looked at the area…She suggested I go back to Cleveland Clinic, or Urgent Care, to exchange the dressing…She called the Doctor ‘On Call’ at Cleveland Clinic, and send him a picture of my surgical area. After a while she said: I can do this! I just needed the right equipment.  I felt so safe and secure in her hands…NOT! But…I told her to come back the next day! (I’m a brave woman!)

She was filled with self confidence the next morning! She took charge and knew what she was doing…very different from the day before. Joanie came as well. I wanted her to be present…just in case…It took a while to change the dressing…it was many strips of tape that needed to be pulled off, and to be careful of the tubes…plus the discomfort…But she did it! With Joanie’s help!

Pewh!

After this I asked Joanie if she could help me to change the dressing from now on… she said “Sure!”

No more Home Care!

This entry was posted on September 24, 2014. 6 Comments

Chap Stick and Surgery…

9/11 – This date has so many meanings…NINE-ELEVEN…

It makes me feel sad. It makes me shiver sometimes. It makes me think of loss…It makes me think of that exact time 13 years ago…I remember exactly…the horror, the pictures, the sorrow…

13 years later I’m having breast surgery on this day… I feel I’m blessed to have so many wonderful souls/spirits on the other side helping me through the surgery and lovingly caressing me…Holding me high…whispering “you’ve got this!”… These souls have a busy day (for sure!)….reassuring their loved once, on earth, that they are perfectly okay this day – NINE-ELEVEN.

I’m also so immensely grateful to all of my family and friends who, on this day, were praying and thinking of me. Lighting candles, sending me healing thoughts! They worked! THANK YOU! I love you!

I was a little anxious the night before (actually for a few days before…) we woke up at 4.30 a.m. on Thursday the 11th. We had to leave the house and two confused dogs, around 5.00 a.m. I looked my sweet dogs in the eye and said “Don’t worry I’ll be home soon. Loveyouloveyouloveyou to the moon and back!”

As we were driving away I saw Emma and Freja looking out the living room window…maybe thinking “Why can’t we come? Can we come Please and Thank you…we’ve been good dogs….promise not to bark at the fence ever again! Scouts honor!”

Got to Cleveland Clinic before 5.30 a.m. No traffic at that hour. There were lots of PARKING spaces available. Woohoo! You have to appreciate the small things sometimes…

The front desk girl asked for my name then she turned to another lady and said “Got one for you!” She asked us to sit down and we did. A few more people joined us, and then we (all) walked over to the “Pre-Op” part of the hospital.

After a while, my name got called and they showed me into the Pre-Op room. Brian could not come with me because I had to change clothes (been married 24 years…).  Then, Brian got escorted into my “room” with curtain drapery…Of course I had to show him my new fashion statement of clothing! I got some clothing that I have never seen before… It was like a thick paper coat…in the color blue…matching my eyes! Ugly as hell, but extremely smart. I had to show it off to Brian… “Bair Paws”, a disposable paper gown!

“A new type of operating room gown is helping hospitals fight infection rates. And this breakthrough in medicine will remind you of one of the oldest and most popular hair dryers around.

It’s got the flexible hose with the lock and release system and even the soft plastic lining that inflates to help disperse the heat. But this isn’t a soft bonnet hair dryer. It’s the Bair Paws system, the latest in infection fighting operating room technology.” (from the internet)

If you are not a frequent visitor at the hospital, then you might not know they keep these facilities freezing cold! So, being  a little nervous (check), having to strip down to nothing (check) and putting on a disposable paper gown (check) feels pitiful…plus wearing a hat because you’re bald, and cannot wear any make-up (this morning) makes you even more conscientious… (…but this is how vain I am…I painted on eye browns with my eyebrow pencil before we left home…no one noticed!)

Soooo, this hair dryer “Bair Paw” dress was really a blessing…The hot air pops you up and keeps you toasty. I wish I invented this Bair suit! After getting comfy and warm, I had to take this “Bair Paw” off (darn!) and get into a wheelchair. Time to roll over to Radiology. Brian could not come again. We decided it was best for him to go home and then come back after my surgery.

(I was just a tad envious that he could go home and jump into bed with our dogs and snuggle…)

The sweet Radiology nurse asked me if I knew what was going to happen? I said I had no idea! She wheeled me into a room with a big “radiology bed”. A female Doctor came in and said what was going to happen. I don’t remember ONE WORD of what she was saying…I was told to get up on the bed facing down with my right breast in the round hole.

Everything was fine until they started squeezing my breast in between two metal plates…NOT AGAIN! Turned out, it was not that bad (as the MRI with a biopsy)…but the initial reaction was “F… this…not again!” They squeezed “it” and took pictures…then they numbed an area and put in a “flexible line” that was later attached to my pain pump. I could feel the pressure, but it didn’t hurt…Then off to do mammogram. Seriously? Yes, they had to see that this wire was put in correctly. Two mammogram ‘snap shots’ then wait for the Doctor to say the pictures were okay. More waiting time. They put me in the wheelchair in a corridor…for staff only mind you…But it was weird being left alone in a wheel chair…Looking like “a sick cancer patient with no hair left in a corridor” (hm! that’s exactly what it was…)

Turned out the pictures were fine and I was finally wheeled back to pre-op…I didn’t get my “Bair Paw” suit on again, but I could use the “hair dryer heat” under my blanket. Lovely!

Got the IV hooked up, and calf pumps or sleeves… (these sleeves are plugged into hoses with an electric motor. The motor will pump air into the sleeves and massage your legs, sending the blood back to your heart. This is to protect you from forming blood clots) I was enjoying the heat under my blanket and the calf massage for a while…

There was some action in the room…nurses coming and going…beds being rolled in and out…doctors rushing by…I choose to turn on the TV for a little bit…but I got so distracted from medical staff coming in and out of my “curtain room”, asking the notorious question “What is your date of birth?”. Even though I have this beautiful wristband with all my data on it…they still ask DOB? I mean – there is no chance I could have switched beds…I really don’t want to be Carmen Gonzales having a knee surgery…It says clearly on my wrist band when I’m born…They also ask you when they put on the wrist band “Is all the information correct?” You checked it and confirm it. Then they scan the wristband with one of those infra red tools….like “YES! (jubilation!) We have a match!” Can’t be careful enough I guess.

The anesthesiologist comes in. A young man with an accent…He looks European…like Romanian or something…He’s upbeat and trying to be funny…I mean; he’s nice and all…but every time I have met an anesthesiologist they are a little “weird”…maybe they take a hit from the anesthesia once in a while…I don’t know? But the once I have met have been like a little “Clown-like”…trying to crack a joke, or being too upbeat and funny…this one (I could tell) was flirting with everyone (read female)…my ’Romanian Joker’. He, who’s responsible for my life (kind of)… I better flirt back!

Away we go! My bed is being rolled away to the operating room. The room seems small…and messy (!). Don’t know why I thought that…

The smiling ‘Romanian Joker’ looks at me…He’s holding the breathing mask in his hand…He puts it over my mouth and nose and says “Count to 10 My Sweet little One” …I was determined to G O  A L L   T H E  W A Y…I got to three…

(Correction: He didn’t say “My Sweet little One” I just added that ;o)

When you’re under general anesthesia, you’ll be wearing a breathing mask or breathing tube, because the muscles become too relaxed to keep your airways open. Several different things are continuously monitored while you’re under; oxygen level in the blood, heart rate, blood pressure, respiratory rate, brain activity…and a few more things…

I woke up in the recovery room, which is the same room as the Pre-Op room! A nice nurse told me she’s my recovery nurse for the day. She was in her 60’s so I knew she was a “good mama figure”…I knew that she cared. She’s been there, done that. I trusted her. Her name was Jettie.

I felt my lips…they were dry and chapped…I got blood on my finger (my thought was when the “the Romanian Joker” pulled my breathing tube out, he must have been a little rough, and the tape, holding the tube in place, took a piece of my upper and lower lip with it…) I asked Jettie if she’s had any chap stick, but she didn’t. She found something though that she put on my lips…like baby oil…better than nothing. She told me I have to go to the bathroom before I can get moved into a room. I said “OK…I can pee on command” She smiled and said “Maybe not after you’ve been under anesthesia” But it’s true…I can pee on command! This time too…

I dosed in and out for a while…then she said “Do you want me to call your husband?” I said yes. He was already in the waiting room…He comes in and kisses me. It’s good to see him! He did remember my bag that I packed the night before…the Chap Stick is in there!!!

My surgery went well by the way!

There are two incisions. One under my armpit and the other one are on the outer side of my right breast. The incisions are bigger than I thought…about 10 centimeters each…about 2,5 -3 inches. I have a drain tube attached to me. This one drains liquid from the inside surgical area, into a little plastic bottle. I have to empty that every four hours (or so)…the nurses did this the first few times. Thank God! Then I got a hand grenade looking thing, with an attached tube leading into my side (that long needle-thing they stuck me with in the morning) that automatically disburses pain medication every hour.

Me like hand grenade!

Brian peaked outside every now and then because a big rainstorm was approaching. It takes until the afternoon until a bed is available for me. I didn’t mind…I was in “La,La Land”. I had the best nurse and chap stick! At 5 p.m. they received a message that a room was ready. They wheeled me up to third floor and I get a Private Room! Fantastic! Brian cannot come the same way as us. He needed to go through the Visitors part and get checked in. They are pretty strict.

Brian arrives and he’s got our friend, Jane, with him!  Jane has been there for me during every surgery I have had…how could she miss this one? I should mention she lives in California…She knows I would do the same for her!

At this point I’m pretty hungry…I’m not sure if  this is the norm? I get hungry (even) after anesthesia! Before Brian had to leave, I asked him to run down to the restaurant and get me some soup, a glass of wine (kidding!) and bread…I was starving! Jane stays for a couple of hours then she left to go to our house. Brian had dinner ready.

I was all alone…but “happy”. Happy I had my chap stick and this chapter was written with a happy ending…or so I hope! The Pathology department better come with good news!

Another thing – both the Day and Night nurses were FANTASTIC! Absolutely wonderful! I “rang the nurse bell” just because…They were amazed I was just out of surgery!

It had been a long day and night. I felt beat-up, black and blue, sore and tired!!!

At 9 p.m. the night nurse gave me my medication… one of the pills were an Ambien…Sleeping pill!

Good Night World!

This entry was posted on September 17, 2014. 10 Comments

Life and afterlife…

I remember on April 1st when I first heard the words “You have cancer” for the first time. The Doctor spoke TO ME! I felt so totally in denial! Like the Doctor was talking to someone else…I wanted to whistle and look around in the room…not me, not me, not me…Even though it was only me and Brian in the room. It was April 1st…what a joke! Then reality hit me…

Well…maybe not right there and then…it took a few days for the diagnoses to sink in. It took a few days for me to be able to speak the words “I have breast cancer”…yes, it took a few days…It really did…hm…

To be honest – I never thought I was going to die. I thought about it…but I have thought about that many times. Especially when someone close to you dies….you think about your own mortality. Right?

Anyway – after being diagnosed, and thinking about my future…or no future… Why not express how I would like my passing…  The only thing that is for certain when we are born, is that we’re going to die…the rest is an unwritten book. An unwritten book for me (and you) to fill in the pages.

There are a few reasons for why I want to bring up this issue…

  1. I might die. Or, I will die one day! Period.
  2. I remember my mom being at a total loss after my Dad died. She had no idea how he wanted his funeral to be and where…(huge reason)
  3. I did not want to leave Brian with that feeling (plus he would totally pick the wrong music!)
  4. I’m not afraid of dying…so why not write about what I want?
  5. I want it my way… (Being in control? Ha!)

When I pass; please celebrate my life! Remember all the good times. Forget about the bad ;o)

I want everybody to be dressed in white!  (I will be watching)

I want to have a gathering at the beach in the early morning…To walk in silence for 30 minutes (I’ll be right there with you)…then for everybody to gather in a circle and speak from their heart. Peace and love! For the Swedish Minister, who’s in Florida at the time, to say something profound…;o) (I will be listening…hehehe)

Then there will be breakfast with coffee, bagels, juice, mimosas at our house with lots of music, dancing and swimming in the pool! (I will be smiling!)

I want everybody to sign up for Gratitude Training…if you haven’t already gone through it…It will change your life!  (I will guide you)

I want to be cremated…Where my ashes go is not that important to me…Maybe spread some of the ashes on ‘Marabou Hill’ (in our back yard)…at Heritage Park…in Sweden…the Ocean… (Let it fly!)

I believe in life after death. I believe the soul does not die…the soul travels on. Can I prove this? No, I can’t. But I have read so many books and heard compelling stories about “going to the other side and coming back” and “seeing the light, and being pulled back”.  (I will give you a sign…just listen!)

Like Betty Eadie (author) said in one of her books “Life does not end when we die. Death is a rebirth into the spirit world of light and love, a transition from the physical to the spiritual that is no more frightening or painful than passing between rooms though an open doorway. It is also a joyful homecoming to our natural home, a return to the Creator who sent us here and who welcomes us back with loving arms”  (I will always love you).

Now I have to work on the music list!

Namaste!

 

PS. Of course this might change with time…who knows…

This entry was posted on September 5, 2014. 14 Comments

Teachings…

I have a book called “Sacred Path Cards”. It’s a book about Native American teachings and it comes with 44 beautifully illustrated cards. Each card is endowed with a particular meaning and message.

I got this “Sacred Path Cards” from my sister in law in 1990…Looong time ago! I played around with the cards at that time, and read a little here and a little there. I really liked it! After that it’s been proudly sitting in my bookshelf…(staring at me for years…Whispering “Read me, read me, read me…you blond white woman!”)

Then, last year, I went to a weekend retreat called “Feminine Face of Leadership”… Fantastic weekend with about 25 other women!  After that weekend I wanted to create a sacred space in my house. I choose my office. That’s when I rediscovered “Sacred Path cards”. For months now I have been pulling random cards from the deck and read the “application”…then I put the card in that spot in the book. Got it?

I must say that each card I have pulled have taught me something, has been “spot on”, and have amazed me!

The other day I was down to three cards. I pulled the card number 14 “Kokopelli”…I kind of laughed a little, thinking “This is the first card a pull, that’s going to be ‘way off’!”  I know Kokopelli has to do with fertility…and that’s a little too late…Ha!

So, I read the application (with a slight attitude)…

”If Kokopelli has lured you with his magical flute, it is time to listen to his song (bla,bla,bla…) This one is one of fertility (at this point I was ready to quit reading…Yawning!) You are being asked to use your talents to create fertility in some area of your life (Oh! So it has nothing to do with babies…) If things have been slow moving (yes…), Kokopelli’s song is saying that whatever you intend to plant at this time will be very productive for you (…starting to get interesting…) Planting seeds for the future takes effort on your part (I’m a hard worker! Hear me roar!), so now is the time to use your skills and resources to make use of the magic (Abracadabra…Waving my magic wand!) If you have a project to begin or an idea to develop (I have a few ideas…), the timing couldn’t be better. Shift away from any old ideas and move forward. The time is now –the power is you!”

Turned out to be one of the best cards!

 

In honor of my dad, Eric Leijonhufvud.

Friday, August 22nd my Dad would have been 80 years old!

Happy Birthday Pappa!

He was born in Olofsfors, in Sweden in 1934, by my “farfar” (grandfather), Axel, Gustaf, Stensson Leijonhufvud and “farmor” (grandmother) Hedvig, Sofia, Louise Virgin. Farmor went be the name Lisa. My Dad was the third child out of 4 children. First there was Gunilla, then Carl, then my Dad and last but not least, Sten who arrived 9 years later (ops!). My Dad and Sten was born on the same day, and actually almost passed away on the same day (not the same year).

GRATTIS PÅ FÖDELSEDAGEN PAPPA (and Sten!)

I googled my father to see if anything came up…and it did! Wikipedia had a little blurb and Google also translated it…with a few changes from me.

Here’s the translation:

“Eric Gustaf Axelsson Leijonhufvud, born August 22, 1934, died April 15, 1989, was a Swedish writer, known for his trilogy within fantasy genre “Water People” (the author’s daughter would like to translate the title to “People from the Water” or “People of the Water”)

Eric Leijonhufvud worked as city architect of Sala when he died of cancer in 1989. The writing began in 1978 when he worked abroad for SIDA in Botswana, Africa, but the dream of writing, were there many years before that. Leijonhufvud also played piano and wrote music and painted.

He was married to Sophia’s sister Ann Mari Leijonhufvud, born Ohlsson, and together they have three daughters; Maria Katarina Ericsdotter b 1956, Erica Charlotta Ericsdotter born in 1959 and Filippa Cecilia Ericsdotter born in 1961.”

I miss my Dad.  

He was an artist. Very creative…Very much in ‘his own world’.  I remember my Dad, in his home office, playing the piano at least 2 hours a day. Mostly classical music.  As a kid it was “annoying” to listen to classical music… We would tell him to play quietly (!) or I would crawl up in his lap and ask him to play something  we could sing to…My favorite was “Brevet från Lillan” (Letter from Lillan) by Evert Taube. He wrote tons of music, and plays, and books…both children’s and adults. He finally got his first book published in 1978. He had a “dark room”, for picture developing  in our house. He taught us how to develop pictures at an early age…He was also crazy about taking a sauna every evening. In every house we lived in – He had to have a sauna.  That was his way to relax…

He had so many things going on…but  I have to say…He was not a good teacher! Truth to be told! Not a patient person when it came to playing with his kids. He was so into his hobbies. His own stuff. He was very laid back. He was a good dancer. A historian. He loved his family (even though he had a hard time showing it). He was and animal LOVER. And the animals loved him! We had many dogs growing up and litters of puppies…We had a guinea pig, Petronella, who loved him. She would hear his car coming up the drive way, and cryyyyy for him…

He didn’t like to pick wild flowers because he wanted the flowers to be beautiful in nature…He loved butterflies…I can picture him (in front of me) running , jumping like a lunatic trying to catch butterflies with a butterfly net. A very funny sight! He knew all the names of the butterflies and the difference between a male and a female.

I remember one summer some ‘butterfly cocoons’ go into our laundry room, and they were hanging everywhere…even in the washing machine. My mom was not allowed to move them, or touch them…She had to do laundry at the neighbors house. Then one morning the ‘magic happened’…My Dad told us to come to the laundry room and look (I remember thinking why the window was so dark?) and there on the window was hundreds of Peacock Butterflies (Påfågelsöga)…We opened the window and away they went!  Beautiful sight!

He played Bridge, Vira (card game), indoor soccer (for a while), and badminton. He smoked pipe and cigarillos. He loved his whiskey. He was an unhealthy eater… He loved anything with gravy, butter and bread and cheese and cream! Bring it on! Yummy…He loved life!

My Dad was diagnosed with stomach cancer in 1989. I was working on a cruise ship. I remember getting a telex (yes! telex!) on the ship where it said “Dad is sick. Come home”. We were docked in Barcelona, and the next port of call was Funchal, Madeira. It took 4 days before we reached Funchal, where I finally signed off.

My Dad was in the hospital (of course). Me and my mom went to see him on April 10th 1989…We went to see him every single day. He was glad to see me! He could talk a little…or more like whisper. The cancer had spread to his vocal cords (we didn’t know). Five days later, on April 15th he passed away. We were all there in the room with him… It was after 9 p.m…when he took his last breath…

I miss you very much pappa!

I honor you, and I love you!

Your youngest daughter

This entry was posted on August 21, 2014. 11 Comments

Last treatment…

I’m trying to recollect if I was looking forward to my last treatment or how I felt?

“Looking forward” might be the wrong word….more like “Having it over and done with…” sounds better!
What I did know was, that I wanted to remember it. Memorize it… My last Chemo treatment on 08/14/14! (I just love my ‘magical numbers’…I have one more that ‘just happened’. Later)

I wanted a picture of that last drop! FINITO! Pffffftttttt….Done! Did you hear me??? DONE!!! D O N E!

I went through the normal procedure; first I saw Dr. Stone (who was not that late). It was great to see her. It always is…just too bad it is under these circumstances.

I actually had a box of chocolate with me to her. A Swedish “Paradis” chocolate box. Delivered directly from Sweden by my sister. I was thinking about wrapping it but decided not to. What if they (I’m not sure who “they” are…) but I was actually thinking “they” might think it’s a bomb if I wrap it…I’m not kidding! That’s what I was thinking.

So, I put it on Dr. Stone’s desk. After she came in, and sat down, I told her “This is for you. I didn’t wrap it just in case you thought it was a bomb…or ‘somebody else’ might think it was a bomb… if it was wrapped… It’s Swedish chocolate…Thank you so much for everything!”

She looked at me (as if I was nuts…hm?) laughed and said “You really don’t have the character of being a bomber…I think I’m a pretty good judge of that…and we’re not done with each other yet for a while!”

I must have looked like a ghost because she quickly said “Yes! This is your last chemo!” The blood must have come back to my face, and she said “I need to see you before your surgery and after…Okay? Plus every 3 to 6 months after that…”

We talked and she told me my blood count looked pretty good and that we could skip the Neulasta shot, the day after. Her opinion was that my body could handle the chemo and for my body to build up the immune system by itself (meaning me-self!) Eating good (meaning hubby’s cooking!)

I was happy to hear I could skip the Neulasta shot because (I though) this was the culprit that made me feel like I was coming down with the flu… (YOU – little nasty Neulasta shot…)

When I got into the chemo room I walked right up to “my nurse” Debbie and said I wanted her today. She said “I want you too!” ;o) … Only chair no 4 was available…The chair with no TV…Still broken! Decided it didn’t really matter to me, or my sister Maria. We had books to read and Facebook to enjoy…and sleep (for me).

I memorized my last chemo treatment with pictures… “Debbie and me” selfie. “Eating lunch” picture and “Last Drop” picture! Yay! Walked out of the chemo room, for the last time, throwing kisses to the staff (they got chocolate too…unwrapped!), tired, happy, elated… just happy it was over.

Hard to understand it was over. It is over.

Hard for it to sink in…I will not feel like crap and lay on the couch every other weekend from now on.

Got home and I had beautiful flowers waiting for me. I had kindly told Brian I would shoot him… (see…there is a little bomber in me!!!) if he didn’t by me flowers. So, he did! Very pretty!
(Plus, I received a very sweet gift from my neighbor!)

Last but not least…the weekend turned out to be crappy! F-ing crappy! Here I have been blaming the Neulasta shot for making me (feel) sick…and I was just as sick without it. Oh well…

It’s Monday and I’m feeling a little bit better every day. A little bit more energy every day… Wondering WHEN I can have a glass of wine…Is that a healthy thought?

“The Journey after Chemo” continues…

This entry was posted on August 19, 2014. 8 Comments

Why me?… Why not me?

I’ve been thinking a lot! This kind’a happens when you get hit by a curveball like this.

Why did I get “this”? Why me? I consider myself somewhat healthy… I eat a lot of veggies and fruit. I work out… I have run a few half and full marathons… (Proud of me!) Hm…

Is it the wine? Meat? Sodas? Sugar? Dairy products? The micro oven? Plastic containers? Anti-per spirant? Bad air? Make-up? Moldy air from houses that I’ve been showing? What? I have had many thoughts go thru my head…HM! Who knows?

I go from wondering, and blaming this cancer on outside factors…like the above (not the above like heaven…just the above sentence!) Blame it on something. Feels better that way! For a while…

Someone said to me that she would never become a ‘statistic’ because she was a vegetarian…Maybe it’s the meat? But…hm…that can be true either…How about Linda McCartney for example? I’m sure vegetarian people get cancer too. No?

You can do everything right and still get cancer! You can do everything “wrong” and never get cancer. Is it a crapshoot? I think we would like to point to something – He’s overweight…She smoked etc… One of the ugly truths of breast cancer is that more than half of all breast cancers have no known cause and scientific evidence suggest that many cases are linked to exposure to environmental toxins. This means you can exercise, smoke…or never smoke, reduce alcohol (or not) control weight (or not) and still get breast cancer. A woman today had 1 in 8 lifetime risk of getting breast cancer. Yikes! Scary!

What if I had caught mine before it was a stage three!?!

Then you have people who look at you, and kind of tilt their head to one side and say “Take this as a good lesson in life” (I do) or “It’s your Karma, my friend” (ok). I know they mean well.

Maybe this is my Wake-Up call? But, I don’t think I was a sleep. Maybe snoozing…

Since it’s NOT generic (BRCA test was negative).  The BRCA1 and BRCA2 gene was tested. It took 6 weeks to get the results. If you have breast cancer or ovarian cancer please push for this test!!! Thankfully my insurance paid for it. This is not always the case, but I have the type of cancer that are more common to “wander” and are more prone to be genetic. A total of 17,500 intronic base pairs of BRCA1 & BRCA2 was tested and came back NO MUTATION DETECTED! I’m happy to report to my sisters they are safe! I know have written about this before!

Back to my story “Why me?…Why not?”

Do I have some responsibility in creating this? I read another article about “Attitudes and Cancer” And one of the questions was:

  • Did I bring cancer on myself?

It suggests (in the article) that people will certain personality types were more likely to get cancer. The common thought was neurotic and introverts were at highest risk.

Another factor was high stress that could feed the cancer cells in your body to become active and create cancer. This could go on for a long time before you discover it. End of article (kind of).

If this is true…The stress factor…then I am responsible for creating my cancer! And, yes. I own it! I’ve been thinking a lot about this. I take ownership of my cancer. Period.

On a very deep unconscious level, I started this growth without knowing it. … Maybe you think I’m crazy… and some of you might think I have fallen off the deep end! But if you have had cancer or going thru it…THINK ABOUT IT. What do you think COULD have triggered it? GO DEEP! DEEPER!!!  

How did I create this? Well, it didn’t happen overnight!  It happened over a period of time. Years!  I do see things that I go through as valuable lessons – A very big, valuable lesson…Maybe I have been sleeping? Then – this is my wake-up call.

I’m the author of my life. I write the chapters. I get help…but I’m the author. It’s time I write it my way.  After my diagnosis I decided to face this “head-on”. See every step of the way as an experience and a learning period. It’s a chapter in my life I call “The Journey” and I had to fit it in.

It’s definitely not “The END” chapter.

…and the Journey continues…

Round 6 – 2 more do go…Can you believe it? Celebration time!!!

Time flies…

So, I forgot one thing the night before Chemo day…Ops! I was supposed to take 5 pills of steroids at night and 5 pills in the morning on an empty stomach…Totally forgot!  I finally realized it when I was out walking the dogs in the morning. My mind started going in circles thinking “Idiot! How can you forget that?” Being disappointed in me…What if I have to change the appointment? I rushed home and called the Doctor and admitted I was an idiot and had forgotten my pills. The Doc told me to take the 5 morning pills and come in anyway…And that I wasn’t “an idiot!” Pewh! Funny how it works out sometimes! *smiling*…

Can you believe it …the Doc. was 45 minutes late seeing me….What?!?! (saying this facetiously) When I finally got to see her she was very happy with my results. My red blood cells were up by one point. I’m not in the ‘anemic danger zone anymore’. I don’t need a blood transfusion. Which means the liquid iron (that I’m drinking) WORKS! Wopeiii!!!

I went through all my new side effects…from the new chemo – Taxol – and the good’ol shot Neulasta…

  1. Just slightly nauseous. Did not have to take any pills!
  2. Mouth sores – yes! One or two every time!
  3. NEW -Big round rashes under my armpit…like a circle around it. Very irritated. Fresh aloe from our yard helped.
  4. NEW – The worst of all – BONE pain! By Saturday I could not lay down, or sit down or walk around…the bone pain was too much…I had to take an oxycodone!  It took about 45 minutes before it settled in…and when the pain slowly subsided…OH! How nice! I could relax and sleep…Lala-land! Could not wait until I could take my second pill after 6 hours…of course the pain came back! The weekend continued in the oxyxodone mode…By Tuesday I felt fine and could lay off the painkiller.
  5. NEW – Nose bleed. Like turning on a faucet. Not for very long… Maybe 10 minutes. It happened twice the same day…and then I was out of blood ;o)

I think that was it. My Doctors response was to the last two issues were; the bone pain (which they had warned me about of course) She told me not to wait until the pain got too bad. To take an oxydodone when the pain starts…She said “Be comfortable! You’re body is going through a lot of things, so take the oxycodone and relax. Don’t be in pain when you don’t have to!” (Ok! Mama!)

The nose bleed – I was wondering if it had anything to do with me being anemic…She said “You can get anemic from nose bleeds. But you are already anemic, so this is most likely that your mucous walls, in your nose, are dry from the chemo. The only thing you need is a saline nose spray”

Then, because my wonderful Doctor was late, some one got my chemo chair. My appointment for Chemo was 11.30 a.m. and I got in at 12.45 p.m. I got chair no 4, and I don’t like that chair because the TV doesn’t work…On the other hand – I usually just have the TV on, but don’t really watch it! But IT’S THERE ;o) It’s there, in case I really want to watch “Day’s of our lives” or “Family Feud” (He,he,he…Not!)

Since I forgot to take the steroids the night before“they” had to get back at me somehow…Since the TAXOL could give me a bad allergic reaction, I had to take a couple of Tylenol, and they also added steroids and Benadryl to my IV…Wooosie! I get hungry from the steroids and sleepy from the Benadryl…So basically I’m like a baby…I eat and sleep.

For the last 2 treatments I have started to bring lunch with me. The only thing they have in their little kitchen is yogurt, bagels in plastic, cream cheese, some fruit, and trail mix. That is getting old! I wanted something good if I’m going to spend most of the day there!

So, when I was all hooked up to my port, and everything was dripping into my body, I added food to my belly! A good sandwich, tea, an apple and Marabou chocholate! YUM! Around 2 p.m. I got a visit from a friend (Åsa) who works across the street! Great to see her! But when the Benadryl started working I had a hard time keeping my eyes open! It was a fun visit, but when she left I fell asleep like a baby! When I woke up, after 2 plus hours, the lady who was with the “next door” patient said I slept like an angel! I wonder if I snored? Naaaa… Angels don’t snore!

Brian (husband) texted me around 4.45 p.m. to see if I was ready to be picked up? I saw on the IV monitor I had about 50 min left. Brian showed up after a little while. I had 10 minutes left, then they have to flush, and add heparine to the port…

Long day – Left at 10.00 a.m. and came home around 6 p.m. The dogs were very happy to see us! Don’t worry dog lovers….I had 2 people to come over and to walk and let them out during the day! People they know and love!

Now – I’m on my way to receive the Neulasta shot…So, I wanted to post this before I disappear for a few days!

I have another post almost ready…Stay tuned!

Xoxoxoxoxo!

BRCA1 and BRCA2

Before I started this Journey…I was oblivious about all the different breast cancers and all the different treatments. Breast cancer was breast cancer kind of!!! I didn’t know!!! No clue!!!

Many people do not understand that there are different kinds of breast cancer (like me…before). Even some women, who have had breast cancer, do not understand the differences between triple-negative breast cancer, and breast cancers that are hormone receptor-positive or HER 2 positive.

Women I meet may have taken a hormone treatment pill for 5 years to protect them from recurrence. These women may not understand that this option does not exist for my type of cancer. Having to explain this is new to me and can at times be frustrating…because I’m learning myself, and I don’t have all the answers…yet…

Fact: Triple Negative breast cancer is harder to treat than other types of breast cancer. Many tripel negative breast cancers are aggressive. It all depends on the size of the tumor and if it has traveled to the lymph nodes in your armpit (which mine had) (common for tripel negative). Here’s where my wonderful Doctors came In, and reassured me that everything was going fine, even though it was a more aggressive cancer…but treatable!!!

Breast Cancer Gene Mutation – BRCA1 and BRCA2

Everyone has a BRCA1 and BRCA2 gene, which we get from our mother and father. When they work properly, these genes prevent the development of cancers. Less than 10% are born with this abnormality (mutation) in BRCA1 and 2. If you’re born with this mutation you are at risk for developing breast, ovarian and other types of cancers. This test is done by a simple blood test…but here in the US not all insurances pay for them and they are expensive. The cost is around $5,000. With my type of cancer (Triple Negative) I was at a higher risk, and for that reason only it was covered! When my doctor suggested this test I said of course “Of course!” not knowing the cost or anything…then I heard from so many people that this was not covered by their insurance and I got a little scared…Come up with an additional $5,000 for this test??? We don’t have a money tree…Working on it though! ;o)

Turns out it was covered and I HAD NO MUTATION DETECTED! The test says they tested over 17,600 base pairs analyzed…Wow! 17,600!!! I hope this explains a little about the BRCA gene?

When I saw my doctor yesterday, before my Chemo treatment, we went through the NEW chemo I was about to receive…called TAXOL. What’s “funny” about this chemotherapy drug is that it’s called a plant alkaloids. Plant alkaloids are made from plants. It’s made from the periwinkle plant. The taxanes (taxol) are made from the bark of the Pacific Yew tree (taxus)…and to break it down even more the antimicrotubule agents are derived from May Apple plant and a portion of this comes from the Asian “Happy Tree” …to make it very simple – this concoction means they attack the cells during various phases of division. All this could be read on a website called www.chemocare.com. Don’t think I know this by heart!  LONG side note!

So, my Doctor went through the new treatment and the new side effects. First of all I had to take 5 steroid pills the night before the treatment and 5 in the morning. This was to prevent any kind of allergic reaction this Taxol-plant (!) could cause.

  1. Low blood count– Yes, I’m anemic! Ugh! A good count level is 12…I have decreased to a level 8… at a level  7 I would need a blood transfusion. I’m trying to avoid that by changing my diet (again). Yes, I have looked it up and I pretty much know what to add to my diet…and lots of love and prayers from all…of course ;o)
  2. Hair loss – Hm! What’s there to lose?
  3. Pain in the joints and muscles – not yet…wait to be seen…felt!
  4. Neuropathy – tingling of the hands and feet. My Doctor was concerned about this one. It could become permanent.
  5. Nausea & vomiting – got good drugs for that. Will not happen!
  6. Mouth sore – Yes – Every time!
  7. Could have a strong allergic reaction from the Taxol.  The nurse, Debbie, injected the Taxol very carefully, through my IV, for 15 min to see if I had a reaction. Luckily I was fine!
  8. And a few other things that are less important…

This blog has maybe been too serious…and scientific…But in a few years I will most likely be happy and proud of myself do have documented this…and think: Did I really go through this? Wow! There is light at the end of the tunnel…I am 60% though my chemo treatment. I have three left. I remember going into my second chemo – I was ready to QUIT!  I was ready to tell my Doctor “I’m done! I don’t want to do this anymore!” But she was my cheerleader and LISTEN to me, and I got through that heavy meaningless feeling… I didn’t ‘sneak out’ the back door, but took charge, and faced my IT…

I hope this will help other people facing cancer. I want them to feel free to contact me. I would welcome them to pick me as their mentor, cheerleader, shoulder to cry on, two ears to listen and one mouth to support them…

Thank you all for reading my blog and thank you for your posts on FB! I’m overwhelmed by your support and LOVE! Absolutely overwhelmed! LOVE YOU BACK!

 

This entry was posted on July 3, 2014. 5 Comments

Processing what to do…

I met with my Oncology Surgeon Monday morning, Dr Blake. She’s a beautiful “power house”. I have done four chemos, and it’s time to switch to another kind of chemo. Dr. Blake who’s going to do my surgery wanted to see me to talk about the surgery and also tell me about my options.

My cancer has shrunk for sure! Even I can tell! A good sign! Celebration! My lymph nodes that was almost as big as a grape size is now smaller than a pea…My breast lump, that I could never feel myself, is also much smaller according to the Doc.

She talked about my surgery and it’s pretty much up to me what to do.

In a way I don’t want it to be up to me…I want the doctor to tell me what to do…That way I can get out of making a decision. I know – That’s pretty lame! Not wanting to deal with it. It’s a big decision…

I do not have to make a decision right away. I can think about it until we see each other again, in late August…Here are my options:

  1. The least invasive is (of course) is the lumpectomy where they only take out the lump in the breast and the lymph nodes under my arm. The Doc don’t know (yet)  if she can save any of my lymph nodes…Remains to be seen…The chances of the cancer coming back is slightly higher.
  2. To do a lumpectomy. Take the right breast and do a reconstructive surgery. They can’t do the reconstructive surgery at the same time (which would have been great…”two birds with one stone”) because the new “saline boob” can’t handle the radiation (which I have to have after the surgery).  Also…this might be very vain…but it’s what going through my head…If I choose this…and let’s say in 20 years from now. My right boob will be perky and young looking, and my left boob will be a small pouch hanging and looking sad…hm…
  3. To do a double mastectomy. Take both breasts. My first reaction was “I don’t want to remove something that is perfectly healthy and good”.  BUT, if it reduces my chances of getting the cancer back – the yes! Then again, I can’t do a reconstructive surgery right away because of the radiation after wards. I most likely have to wait one year to do it…I really don’t want to go through another surgery after all this…It’s really taxing on the body and psyche. And it’s not good for the body to get anesthesia too many times…

I DO realize that I’m lucky to have these options. I’m also scared to make the wrong decision…Many women with breast cancer don’t have a choice. I do.

During this time, until I see Dr. Blake again, I will gather all the questions I have, and weigh the pros and cons. Ask what the chances are of the breast cancer coming back with these different options…Time to reflect.

The date for the surgery is booked for September 11th!

I must say I have “picked” the most memorable dates going through this Journey!

  1. On April 1st – I got diagnosed with Breast Cancer. April fool’s day! (I wish!)
  2.  On May 1st –  I started my Chemotherapy treatment. May Day, Walpurgis (Valborg)
  3.  On 9/11  – I’m having surgery. I don’t think I have to say anything about this date.

Dates I will never forget!

Maybe I should finish up by having my last appointment on Halloween?

;o)

 

 

This entry was posted on July 1, 2014. 8 Comments