Tuesday contacts

Tuesday....lots of pain in the morning...walking around like a hunched over old hag.....had trouble reaching to put laundry away....not good. Cried out frustration. Rested a lot on the sofa...listened to book on iPod....looked at magazines....read snail mail...clipped my fingernails.....nothing much. No energy. I felt better after a hot shower and stretched my body and breathed deeply. I want to learn more about Chai Quon (or something like that). A friend has told me there is a woman in Helsingborg who specializes in a form of Thai Chi for cancer patients. Waiting for her to get back to me.....always waiting....it seems.

Finally talked to my nurse. Both she and my doctor had called me yesterday but only on my mobile phone...which I only use when I'm out and about.(otherwise it's turned off) Neither one tried our house phone although they both had the number. Growl! I will tell them tomorrow that I prefer the house phone but from now on I will have the cell phone handy by.

Summary of Nurse phone talk:
- no appointment time set for my liver biospy - will get back to me about it tomorrow
- no appointment time set for my MRI (see above)
- no appointment time set for dietician meeting (see above)
- result from one blood test concerning my nightly fevers...yes, my blood number for infection is high, perhaps it is a virus- Doctor will talk to me about it tomorrow.
- nurse suggested that I get in touch with Kamrater (don't know if I have the spelling right) for support & suggestions about how to tell my daughter! WHAT? Like I've known this for 3 weeks now....Been there, Done that! Got many books already on the subject, thank you very much. (do I sound bitter yet?! I felt like screaming to her...YOU PEOPLE ARE SO BLOODY SLOW THIS IS MY LIFE WE ARE DEALING WITH!!!!) Breathe deeply. ouch. that hurts. Breathe swallow.
- I got a little upset about the MRI appointment delay (see yesterday's post) and told her that in Landskrona there is a machine that hardly gets used and if I could I please transfer down there for that procedure so that it gets DONE faster....she got a little flustered and told me that Helsingborg Hospital doesn't usually use Landskrona's equipment but if I was willing to go to ängleholm there could be a possiblity that I could get an appointment sooner than in Helsingborg (since they only have one working machine but they are working longer days and on weekends to meet the 2 week waiting period limit). She asked if I would need a tranquilizer for the MRI, because if so than I can only go to Helsingborg but I told her I can stand the small enclosure for the test...I just want to GET IT DONE! As long as it is not physically painful, I can handle the claustrophobia bit. So now I'm on the list for both places. Yeah!
- she reminded me to try to eat normal but small portioned balanced meals during the day...I could have some sweets, chocolate, a little wine....I stopped her and said but I'm on Dexofem painkillers the first doctor told me to ABSOLUTELY NOT drink alcohol. She replied flustered again...oh, that's right! no alcohol. I'm beginning to wonder who is in charge here! Well, it's ME, of course, but SHE is the medically trained person! Breathe, Carol, don't freak out.
- she will get the doctor to fill out the necessary forms for the Insurance to pay me my wages now that I'm on official sick leave. (first 2 weeks are paid by the employer in Sweden)
- end of conversation....she will call me again tomorrow--HOPEFULLY with some REAL INFORMATION!!

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You should see the box of luscious truffles I got from my dear friend from San Franscisco, Janis and her partner, Maria! THANK YOU!!!! Loved the letter you wrote and thanks for the Allende speech! I told Bo we could SHARE the truffles. Is that fair enough?

Had a maravillosa telephone call from my best Peruvian friend in Switzerland! Giannina ALWAYS makes me laugh...sometimes to tears! Te quiero, mi amiga fame!perfectismisaoptimistmaestupenda, y tu familia tambien! ;-)

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Tomorrow is MAYA's 7th Birthday! She was so excited she couldn't sleep in her own bed...so she cuddled with me awhile in my bed before going to sleep. I asked her if she had any worries for the little box I keep in my pillow case but she replied "no worries tonight Mom, just excitement!" We will all go in to wake her up in the morning singing....but we'll open presents in the afternoon after school by the fireplace as is our custom. She'll go to school dressed as a Påskkyckling (Easter chick) tomorrow (an outfit she directed me to make last year). They will have an Easter Crafts Day with their mentors in the 2nd grade class. Should be fun for her!

During Maya's bath we had this conversation with the dinosaurs. (Maya is asking me to play with her so much more right now...I'm doing it, she needs it, feels good.)

Maya: You be the Mommy and Pappa Triceratops, I'll be the kid one.
Mommy: What will they be doing?
Maya: The Pappa one just wants to do the fun stuff like tickle the kid and be silly and the Mommy one wants the kid to do all the important stuff.
Mommy: What's the important stuff?
Maya: Like you do with me; brush teeth, comb hair, pick up room, go to bed, you know.
Mommy: Can't the mommy be silly too and do fun stuff?
Maya: Yeah, but the important stuff is IMPORTANT!
Mommy: Smile! :-) (at least she knows it's really important and not just nagging!)

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Tonight we watched About a Boy with Hugh Grant (always easy on the eyes!) ....but damn it if it didn't have a suicidial mother in the story! I didn't cry though...knew the outcome would be good!

Hoping all is well at school....no one has called me or emailed, so I guess it's OK.
Have to admit I don't think about my work so much but I do think about all the kids and the teachers! I miss you all!

That's all for now...time for bed!
Tomorrow I will be reporting more concrete news! Yes!

Not much of a Monday

Monday, Monday....waiting, waiting.

Tried to get in touch with my special nurse, Petra, but the phone was either busy or she was busy. Will try again tomorrow. Sort of put me in a down mood. I had the impression that she would be there for me whenever I called. wrong.

Found out that one of the two MRI machines at the Helsingborg Hospital is broken so the lines to get into to one are even longer.....my husband's Uncle is also in line for one (that's how we found out)...he got an appointment April 8...I don't even have an appointment time yet! My friend Kelly Sue said her Landskrona Hospital has one that they hardly use! I'm going to ask my nurse or doctor tomorrow how I go about getting over there instead. I'm trying hard not feel DESPERATE!

I counted down the "Friday cancer team Meetings" for when my case would potentially be discussed again...and wouldn't you know it * splat* it's on GOOD FRIDAY (långfredagen). A red day in Sweden when all professionals don't work! FUCKING SHIT TO HELL! (sorry!)
Can you believe it!???? Going to ask my nurse about that too. Maybe with any luck they have the cancer meeting a day in advance on red days! I'm afraid that is wishful thinking! So that means I'll have to wait another damn week for them to discuss me! SCREAMMMMMMMMM
Oh dear lord, give me patience, give me strength to endure this wait! I keep wondering how my care would have been different in the USA. But to travel to the USA for treatment is really out of the question. We don't have insurance there. And that would mean completely uprooting my family and REALLY disturbing my darling Maya's life. Can't think like that....I'm here. All good things come in good time. Breathe Deeply.

We watched BIG tonight with Tom Hanks (love that man!)...even though it's not a knock out laugh movie, it's one of my favorites and I already knew the outcome. I was sure I wouldn't cry. Last night was a disaster...we decided to watch P.S. I LOVE YOU because the box said "best romantic comedy since When Harry Met Sally", it failed to mention that the woman's husband dies of a brain tumor. So it was all about how she was dealing with his death. It would be a cute, funny story but NOT for me in my situation! By the end I was crying so much I thought I was having some sort of stomach spasms and that hurt all my insides! (My husband asked why I didn't turn off the dvd...but I wanted to know how it turned out! Thank God he wasn't watching it!) My parents went all freaky on me because they really didn't know what to do--hug me, slap me, shake me, sing to me. I took a sleeping pill to calm myself down and I couldn't get into bed fast enough to "close down". Not again shall that happen! No movies about anyone dying! (unless it's like Pirates of the Carribean or something ridiculous like that!)

My father planted some pansies in the back yard....makes things look more normal since that is something I would have done by now. Cheery. Bulbs are coming up all over the yard!

Bo worked on the bathroom cabinets. The electrician is coming this week to put in the light fixtures again.

Maya, cutie pie, is almost SEVEN! She keeps reminding us about the date! My little April Fool! We'll celebrate with more family and friends during the weekend. Her "Bird Party" with school friends will be a couple of weeks when the weather is nicer.Forgot to post these photos...THANKS to Mara my friend from GHS days for sending me some TURTLE POWER and comical reading! (That's her on the cover of A Rotten Apple: a memoir of teaching!) And THANKS to my dear esteemed colleague, Lori, from Elizabeth Street Elementary School days (80's) for her insightful selection of books for me (the parent with cancer) and Maya (child of a parent with cancer). We have already put those to good use every day! The interactive notebook I'll save for when treatment actually begins!
(below is the t-shirt Mara sent to me! Thank you!)

THANK YOU Erin and Nathaniel for the Planet Earth puzzles! They arrived today safely! Polly has already assessed the situation with Maya and they've decided to start with a 100 piece first! I also got a bunch of cards! :-) Thank you!

Taking my daily walks, pain or no pain, I must go! Today Maya followed on her bike. The neighbor's dog followed along with our dog. So we were quite the little group waddling down the road....reminded me that EXACTLY seven years ago today I walked in my house slippers (my feet were so swollen I couldn't wear shoes) with my parents & hubby for 3 miles through the forest a day before my first contractions started with Maya! Today I could barely walk a half mile! Oh boy....I will get back on trail again as soon as I kick cancer's ass! (literally!)

Wheat grass sprouts are growing in all various stages of development around the house! Meanwhile I'm mixing wheat grass powder in my morning water...feel just like a cow at
a bar! "Hey there bartender...I'd like a mug of your best grass!" Burp! You should see what the stuff does to my poops! (nothing hurts coming out! :-) Told Bo we could save them to dry out for burning in the wintertime! LOL

Yesterday one of my Swedish friends, whose son is in Maya's class, mentioned to me that Maya had told her son about my illness. I had already told this friend so she would be prepared since Maya and her boy talk A LOT together (for better or worse at times!). So I asked Maya about it.
Mommy: "Have you told any of your friends about my illness?"
Maya: "Oh yes, I've told many of them."
Mommy: "What did you say?"
Maya: "I said you have a bump in your rump that won't let the poopies out very well. And I also said you have a lovely liver paté that is working hard!"
(Now I'm thinking, Oh great...EVERYONE in Perstorp will think I'm having major hemorroid problems because I'm addicted to expensive goose liver paté!! or who knows what!) LOL

For those of you who don't speak Swedish...just read this like the Swedish Chef from the Muppet Show and see if it doesn't make you crack up!

"Min Mamma har klumpen i rumpan."

Well....it took me so long to write this that now it is Tuesday! Sure am glad Monday is behind me!

WISPS finished for March Challenge

For my end of the month report to May Britt and Kris at Tag-Along-Teddies....here is what I finished in the month of March for the Challenge....and boy, was it a challenge to accomplish something this month! The month that has changed my entire life! Above...the Work in Slow Progress (wisp)....as how I left it off sometime in the 1990's.....and below, 3 of the 4 little Easter baskets that I will be sending off to new homes this week for the Easter Swap and Angel Swap. I'll keep one for Maya and another friend. Finally...I finished the twin girl baby quilt...started in 1996! Below you can see why I didn't machine quilt the baby quilts...the batting is just too fluffy for my machine, even with the walking foot on it. So I just hand tied the quilts together rather than properly quilting them. My mom and Maya are often head to head like this working on a puzzle together. So sweet. I'm so grateful they are here to help us. Their presence takes so much stress off of me to be super mom and super housewoman. I can rest, cry, sleep and be as I need without worrying about all the other stuff. And between naps I have managed to get some normal things done...laundry, sewing, cleaning, letter writing...etc. Playing with Maya everyday is a TOP PRIORITY, too. She likes paper dolls and I took out my old ones to share with her...she was especially pleased with the Mary Poppins set! We've been playing together with them this morning.

Now we'll have lunch then drive down to my friend Liz to donate 2 boxes of English materials to the American Women's Club media sale. Unfortunately, I won't be able to attend this year but at least I can contribute stuff! Always feels good to get rid of stuff!
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My friend sent me this video clip....I'd love to present it to Dr. Blue Lagoon and Dr. Soft Swede .....Come on....Laugh with me!

Colorectal Surgeon Song

http://www.youtube.com/watch?v=_N0w2rORwSc

Very tired on Friday

I guess I was rather exhausted from yesterday's events at the hospital....and a little episode of Maya running away to the neighbor's without telling anyone. My usual peppy morning time was not....and I rested on the sofa most of it. By the afternoon I felt better and took a walk with Mom and Pepe the dog...but we went too far and I nearly didn't make it back home upright. Need to pace myself better!

Surprises in the mail again! ....Kisses, Hugs and Reese's peanutbutter eggs from my cousin Linda! I was so surprised I cried! She lives in Hersey, Pa so that was the obvious gift to send me! YUMMY! THANK YOU LINDA!
So far every one of the Protein drinks that I have tried, I like....this will be a tough decision to choose the favorites! Maybe they'll allow me to have a bit of all of them! variety is good!

Wheat grass is starting to sprout....

Will post more tomorrow if I'm up for it.

Further investigation needed.....

Just to give you the run of today's events... Can I cry and laugh at the same time? OH YES!

This is what we found out:

1- next week I will have a biopsy on my liver
- there are 3 spots spread out across all the lopes of the liver (so parts of the whole organ are contaminated...not just a small part)
- these 3 spots may not be cancerous, but they probably are....biopsy will tell and after today's probe they may not be related to the lump in my rump at all...they may be something completely different

2- next week I will have a MRI on my lower abdomen
- to determine just how deep the infected tissue goes into my flesh
- to determine without a doubt if the source of the cancer is in the rectum or the anal canal

3- next week I will talk with the nutritionist to discuss my body's needs during this fight process...
- in the meantime I was given a bag full of yummy power nutrient drinks to try, and I'm to make a list of my favorites which will be prescribed to me for the duration of the fight time, these are presciption drinks.

I met the Nurse in charge of my care...Petra, she seems very nice and kind, a gentle but assertive type. Someone who would rather laugh with me than cry with me. I can call her with any questions I have and she will find the answers for me. She will be calling me to check how things are going for me. Her English skills are excellent but we agreed that as much as I can hang with Swedish we'd use it until I was too tired. (Thank goodness the Swedish school system teaches children another language starting in Grade 3!!! And aren't I lucky that that language is English and not German!)


My doctor, who I will call Dr. Blue Lagoon (he is from Iceland), is very professional. As we had our discussion today his dark blue eyes hardly glanced away from my face...face to face we talked without one bit of emotion on his face. My God, what a job to have! Telling me all the things he must, answering my hard questions with complete professional NEUTRALITY. At first I was upset...why couldn't he be a little bit jovial?...a little bit sad?...but either one of those would have given me the wrong impression. The fact is that they still don't know the BEAST inside that is my enemy. Until they know that answer, no prognosis can be made. Basically what he said was this, we can't start the fight until we know what weapons we need to use against this beast. If we use the right weapons from the beginning we won't be wasting any time during the battle adjusting strategy. The wait will be difficult but I've got to use this time to my advantage! (as Bo pointed out to me later..at least they don't think I'll kick the bucket during the next 3 weeks!) He said that the most important thing now is to PREPARE for the FIGHT! Get my body ready...which means a little excersise everyday so I don't lose too many muscle tissues and most importantly, STABLIZE my weight! (I've dropped another 3 kilos since my last post about it.) When Dr. Blue Lagoon said this I burst out laughing...never in my life has a doctor told me to hold on to the weight I have! Now is NOT the time to shed the kilos! I need to eat balanced meals in small portions 5-6 times a day instead of trying to eat 3 regular meals. And I can drink the nutrition drinks as snacks. (Petra suggested in a wine glass poured over ice cubes! I like her!)

Then there was Dr. Soft Swede, who is the chef of Doctors for this unit, also on my case. He is overseeing all the decisions for my situation. His English is also superb and I was so glad when he used it after the retroscopy to explain their findings. They didn't give me any morphine this time...only a BUM NUMB. Thank goodness I had brought an iPod to listen to during the procedure to distract me 'cuz boy did that HURT. The Doctors said I could call it "off" at any time if it got too painful but I stuck it out because before we started Bo came to my side and whispered to me "NOW you begin the FIGHT, Carol!" (he was absolutely right because if I hadn't let them go through with it they wouldn't have ordered the MRI) I won't share with you what they did with my bootilusciousness...but I can tell you that Dr. Soft Swede was as gentle as gentle he could be for such an invasion into my rump to find the bad bump. (Thus his nickname) He was grateful that I was able to withstand the pain to give him a first hand view of the area because now he could put his view together with the notes in my files to make a more complete picture of the situation. Up until today he had only read the reports from the 3 other doctors who have looked up my butt!

With a picture chart he explained that the tumor seems to be more in my anal canal which coincides with the "neatness" of it...unlike rectal tumors that spread themselves around the rectal area and into the intestines, mine seems to be rather isolated. Hence, there is a possiblity that what's happening in my liver is either another type of cancer or something else! (a lost alien perhaps?) This kind of anal canal cancer is rather rare (in Sweden) with only 400 reported cases per year...whereas there are 5,500 cases of rectal/intestinal cancer. Also, and I found this interesting, the anal canal is part of the organ that is our skin. (So I asked if it could be like a melanoma...thinking of all the beached whale imitations I used to do on the sands of Florida growing up with my bum facing the sun!) But he said that wouldn't be likely. (My father howled with laughter later wondering if they would do a skin graft to replace the skin there...see what I have to put up with!? ha ha Dad!) Anyway...the MRI will give them more answers to be sure about this beast within.

They also took 3 blood tests...a little concerned about the fevers I've been having in the evenings, my vitamin levels and a tumor test (but I 've forgotten the name at the moment and I'm too tired to find my notes...).

My preparation to go to the hospital was rather planned because I wanted to be ready in case they decided to keep me there over night....for some reason in my head I thought of the American (?) wedding tradition to bring good luck on the special day for the marriage. The bride is supposed to wear......
"Something old, something new, something borrowed, and something blue"
Although I didn't wear everything, I had these things with me.
Something old=my sea turtle earrings (sea turtle= long life and endurance)
Something borrowed=Kelly Sue's iPod with "Moving On" and "Hope and Glory" songs
Something blue = my GO GATORS fuzzy socks! (Gators are the CHAMPIONS and I will be too!)
but Something new?....agh what to bring? .... I settled on an unopened tube of tooth paste! can't get much cleaner and newer than that when packing an over night bag! LOL
I figured we got this horrible diagnosis on Friday the 13th...I gotta use all the other rituals, traditions, supersitions, and wise tales to combat it!

So now we're waiting alittle more...
but PREPARING FOR BATTLE!

Tomorrow I'll share what I got in my surprise packages! :-)

Tom, We watched Ellen's Here and Now HBO special tonight...MUCH better than Borat last night. (My students kept telling me how funny Borat was so we watched it and I"m horrified parents would allow their children to see that total crap! That DVD went straight into the trash! bleeck!) Love Ellen!

FEELING GOOD!

I'm ready for whatever happens today! BRING IT ON!

The sun is shining...the birds are singing...there's not a drop of poopy in my body ...and I'm ready to be poked, proded, and prognosised! (is that a word?)

Bo just came in with an armload of packages! SURPRISES! OH, THANK YOU!

Today is HOPEFUL and ENERGETIC!

PS- need to tell story of playing dinosaur family last night with Maya.

Waiting for tomorrow

Just hanging out waiting for tomorrow's anal & rectal review! Sounds like a bad comedy show! We hope to get answers about what's happening there inside my stomach, too, with those inflamed lymphnodes.

To tell you the truth, the pains in my ass aren't the center of attention anymore, maybe because I don't sit in the car so often now. (when it hurts the most!) My entire abdomen is where it is most painful now. It varies during the day and night where the pains are most severe. I can explain it to you like this, most of the time it feels similar to those cramps or "stitches" you get on your side when you've been running or jogging. Only I haven't been running or jogging and the feeling never really goes away even with a full dosage of pain killers that I've been prescribed now. (I'm trying not to over use these). And it's not just in my sides--it's a bit here, a bit there and oh, sometimes over ttthhhhheeerrrreee. (I"ve had these pains off and on over the past months but I thought they were from indigestion...I especially had them at night when I was quiet and calm, probably feeling my body more without the distractions!) I can manipulate the pain by the way I sit for small periods of time...like holding my body in a certain position with the help of pillows. Lovely Liver must be swollen because for several weeks I haven't been able to take a deep breath without the ribs digging into her, this makes deep laughing painful, yawns painful and coughs painful. (I think many of you may have felt something similar when you were at the end of your pregnancy.) These swollen organs also make it difficult to bend over. I feel like one of those fat bellied Buddahs! ...I'm squatting much more to reach lower heights. Oh great...now my thigh muscles will get stronger and bigger! LOL

Getting up out of bed and standing up from a sitting position is often VERY painful because it is as though my liver and all her organ friends stay in the bed (or chair) and I'm pulling away from them on tight rubber bands that are about to snap off! It is HORRIBLE! I want to grab my abdomen and hold everybody in but to touch my stomach hurts even more and I usually end up giving in and going back to the orginal position for a moment and re-adjusting before trying again at a slightly different angle. Rolling out of bed is IMPOSSIBLE! OUCH! Getting off a chair in my "minimal pain" style probably makes me look like a sumo wrestler ready for an opponent! Who said cancer would be elegant!?

Mornings I'm feeling pretty good after the painful break from the bed...today I concentrated on eating a snack between meals to help with the low blood sugar MONSTER who had been appearing each afternoon. And the kitchen crew had dinner on the table by 6pm (18:00) which was much better for ALL of us!

We watched Best of Show last night...lots of ridiculous laughs! (Thanks Tom!)
Soaking the wheat grass seeds to plant tomorrow.
Using the juicer with all kinds of veggies everyday now.

Tomorrow Mormor and Granpa will be in charge of Maya's swimming school stuff and they will go swimming with her at the indoor pool afterward her class! FUN...

I'm taking things with me to the hospital just in case I have to stay over night...don't want to be stuck again wearing those button-popping pj's and hospital underwears! Better to be prepared....

More later...will let you all know the results as soon as we know!

In a holding pattern....

Embarrassing as it is...here is the FIRST photo I took with my new camera! Luckily, the camera did not break!

(do NOT click on the image to see a larger version until Halloween!)
My brother, Tom, sent me this HEALTHY JUICER to make my own WheatGrass Drinks...and other nutritional drinks for my struggling body. Dad (what a clown!) put it together yesterday and we had fun experimenting with it...making a lot of mess in the process ...we had the collection tray on the wrong part at first and all the precious juice went all over the floor! (Pepe the dog didn't like it, he said he eats enough grass from the garden.)

Dad made a special trip to town to get a different variety of veggies to use in the juicer! He had a good mixture with a bit of grapes for sweetness. It was quite yummy and boy, it make things MOVE inside me...not in an uncomfortable way but a really good way! Maya and Dad will plant the wheat grass seeds tomorrow and then I'll be able to start drinking that valuable oxygen! (Cancer doesn't like oxygen.) Along with the milk thistle extract, I actually feel a little better these last two days. (maybe it's in my mind....but....if my mind is happy, my body feels happy!)
While my Dad and I played with the juicer...Mom and Maya were having their own fun unraveling some gorgeous 'fabric yarn' she is going to knit with in her spare time.
Maya danced around unspinning this material...should have used the video function on the camera but I was a little lazy. I have some playing around to do with the camera and reading some of the instructions so that my photos will be a bit better!
We are in a holding pattern here as far as the treatment goes....the waiting is hard but the days seem to go by rather fast despite the fact I'm not doing hardly anything all day long. A rather sudden change in my life style...I used to complain I never had time for anything...now I have the time but not the energy. There's a lesson in that....

The important question they are researching before starting treatment is...where is the source of the cancer. Where did it start growing from....my anal canal or my rectum? In any case....it's all a PAIN IN THE ASS to me!

The receptionist for the cancer department at the Helsingborg Hospital called me back today (I called her yesterday with some requests and questions).

1- the phosphoral ( a top down cleansing for test preparation that Nurse Kelly Sue had recommended) is NOT recommended for me in my condition. It's too strong according to the doctor. So I must use the bottom-up cleansing for my appointment on Thursday. (SCREAM) She gave me the name of suave we can buy at the pharmacy to numb my bum before Bo administers the torture to me. She also said that I only have to do it once before going to them instead of twice. Praise the BUTT GODS!

2- she could not find out about the appointment I was supposed to have with the nutritionist...but said that I will probably get that information on Thursday. (I will stalk them until I get the information!) Although I feel my brother, my husband, and my personal nurse: Kelly Sue have me on the right track with the wheat grass and the milk thistle...and the iron tablets from the doc...but I know there is more to it than that. I will say that my weight is stablizing now at 5 kilos less than I was 2 weeks ago. It was pretty scary there when I was losing 1 kilo a day. (for you metrically challenged that means 2.2 pounds = 1 kilo)

If you look at my photo, you'll probably think..."Hey Lady, you could lose a lot more kilos"...but THIS is not the way to do it...not before I need my strength for the FIGHT!

Well...that's all for now folks! The adults in our house are going to watch a funny movie that my dear brother gave to us! Tell you which one later....(Best of Show)

Thanks for all your messages, thoughts and prayers! Love you ALL!

New update coming after dinner

Nothing much is happening....but I will give what little update I can after dinner....so when will dinner be ready...doesn't the kitchen crew know there is a woman with a hungry body waiting!?
My lovely liver is waiting to do her job again....

This time of day...between 17:00 and 20:00 is not a good time for me.....I get a little irritable! GROWL......MONSTER LADY....

Sunday Diversions

Rather tired tonight...a good tired.
Just a run down of the today's highlights:

- woke up in good spirits (thanks to those little worry dolls, I'm sure, Maya and I gave them our BIGGEST worry last night---the doozy one, and we both sleep well!) Our feet were hugging each other in the morning...can your feet hug, too?
- I figured out the best way to get out of bed that doesn't make my organs feel like they are being torn out of my body one by one....a sensation that I want to avoid as much as possible! I scoot my body (while on my back) sideways perpendicural to the bedside with my legs hanging a bit over the side, then slowly raise up on my elbows and lift my torso up straight, to a sitting position, rest a moment, then use my legs to stand upright slowly...avoiding clenching my stomach muscles too hard, rest and breathe and give thanks I can stand! Look out window and bless the day! Tell my body I love it and give myself a hug. Phew...wipe the sweat off my brow! (no kidding!) Goodness know what I will do if I have to go to the toilet in a hurry! Maybe it's time to get rubber sheet protectors! (I'm not ready for diapers, yet.)

- ate a delicious breakfast of Grits and Florida OJ with Maya before everyone else got up
(How Southern girl is that!?)...Grits probably aren't the first thing on the nutritionist's list but boy do they make a body feel warm and cosy inside!

- Kelly Sue brought my parents to our house in the mid morning! THANK YOU KELLY SUE for picking them up at the airport! love you! And Nurse KS brought me the name of something I will request for doing a top-down cleansing for Thursday's appointment, instead of doing a bottom-up cleansing ...which gives me a panic attack just to think about it!

- nothing like HUGS from Mom and Dad! :-) (-:



- hearing the sweet, calm voice of Debbie was another of the day's highlights...she lives at the southern tip of Skåne...it's about a 2 hour drive to "stop by for a coffee". Recently we've been chatting it up on Sundays over the phone every once in awhile with a cup of java (or tea). Since I've been diagnosised she's called more often filled with funny stories of her kids or herself sometimes, suggestions to ease my pains, and just feel good ideas! Thank you Debbie! I look forward to your calls!

- Mom carried my GHS '81 yearbook and Senior year photo album in her hand luggage for me! I can't wait to spent some hours reading all the comments and reliving all those memories! This I will savior for a quiet moment. Then when I'm up to it...I'll start some new scanning of photos to use for the GHS blog! (anyone want to offer me a bribe now? just kidding!)- The Göteborg Bomans arrived around 2pm (14:00) to fill our house with children's laughter, screams and energy! Bo's cousin, George and Spanish wife, Victoria and their 3 kids always bring with them good cheer! I get to speak Spanish (which I desperately need to practice more) with Victoria and 17 year old daughter, Desirée! (a kind of therapy in itself for me!)
Victoria is another crafty soul...she made Maya a gorgeous purple silk party dress and she painted a water color for me of the beach view by our summer house! I love her work and now I have my own! Gifts made with TOTAL LOVE! Gracias, Victoria!

Maya and her little cousins Ricardo (5) and Alexander (almost 2) had a grand time as usual! Babies are such clowny creatures and Alexander had us laughing tears at just the right moments! Maya performed a ballet for us! (She's improved her style since the last performance!)

- Barbro, my mother in law, made yet again, despite her own back pains, another delicious dinner for all of us! Her steadfast support and desire to keep me sane & calm over the last fews days they stayed with us is so appreciated! She pulled me gently out of my dark hole last night before going to bed, allowing me to cry out all my fears into her soft embrace. I couldn't request a better mother-in-law! They went home today...vacating the room where my parents are now staying.

- My wonderful, rotten little brother sent Milk Thistle extract to me...and Wheat Grass...will get started on the MT now and the wheat grass tomorrow. Dad will plant the seeds with Maya and then we can start making our own juice in the juicer! All for my LOVELY LIVER! (I haven't seen the juicer yet...gotta leave some excitement for tomorrow!) Thanks, TH! I love you!

- And....I got a new camera! (I'm so spoiled!) My trusty one had pooped out on me a few weeks ago. (pun intended to avoid another phrase!) So lately I've been using an old one that I really don't like much but was making due. Bo and my Dad surprised me with a rather flashy yet simple one...and tomorrow I will read all about it using it! You'll see some nice photos later!

- And that's all for today folks. I'm ready to start this week....with great expectations to GET STARTED ON THE THERAPY! And let the FIGHT BEGIN!!

Interview with Maya and her card for me

Today Maya made me her own card....she was inspired by Mariam's and Fatimah's cards from my classes that I got on Friday. (Kicki: please tell Mariam!) Pappa helped with the writing.It' s a hanging bird! Check out her creativity! It's a sculpture!

She wants more than anything just to see my SMILE
she said...that's why she made it.
Oh, the joy she gives me!
Gotta concentrate on LAUGHTER again!
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I had a good morning but have been in paranoia thoughts all afternoon....took a 2 hour nap but that didn't help. Maya played at a friend's house until 2 of their kids started to throw up! Hope it's not "stomach flu"...don't need that at our house for any of us!
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But this little bird....really makes me puff up with happiness!
I'll have to carry it around the house with me!

Tonight we put the worry dolls into the little box again.
I hope her worry doesn't trouble her tonight so she sleeps well.
We will share the bed again tonight, my husband has night shift and we can hold hands.
Last night I had the cat all over me with his loud PURRRRRING...so comforting!

Maya age 6...almost 7.

I interviewed Maya about me....here are her answers.

1. What is something mom always says to you?
Tuti and monkey
2. What makes mom happy?
when I talk to you on the telephone
3. What makes mom sad?
if I don’t listen
4. How does your mom make you laugh?
saying something funny
5. What was your mom like as a child?
You were a Barbie girl
6. How old is your mom?
I don’t know....2,000? Just kidding
7. How tall is your mom?
quite tall, well like medium
8. What is her favorite thing to do?
be on your computer
9. What does your mom do when you're not around?
rest
10. If your mom becomes famous, what will it be for?
because you work at school
(she didn’t know exactly what the word famous means)
11. What is your mom really good at?
working in the garden doing the laundry, oh and sewing, too
12. What is your mom not very good at?
staying outside when it's winter
13. What does your mom do for her job?
have art class and English teaching lessons
14. What is your mom's favorite food?
cereal
15. What makes you proud of your mom?
That you’re MY MOM
16. If your mom were a cartoon character, who would she be?
Cinderella--you both wear blue things
17. What do you and your mom do together?
do art, play, play outside when it’s nice
18. How are you and your mom the same?
we like crafty things and we live together
19. How are you and your mom different?
you like to work on your computer and I don’t
20. How do you know your mom loves you?
because you are my mom and you call me nice things
21. Where is your mom's favorite place to go?
Florida

Try this with your kids and see what answers they give you! You might be surprised!

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Kelly Sue wrote this interview about me!
(Thanks! You know I'm not good at computer problems! That's why I love your hubby!)

1. What is something Carol always says to you?
When shall we have another crafty day
2. What makes Carol happy?
When she is with her family or on a walk
3. What makes Carol sad?
Injustice and bigotry
4. How does Carol make you laugh?
Telling goofy stories
5. What was Carol like as a child?
athletic
6. How old is Carol?
Old enough to know better and young enough not to care
7. How tall is Carol?
Bout as tall as me
8. What is Carol’s favorite thing to do?
Play with Maya, sew, garden
9. What does Carol do when you're not around?
Lots of stuff
10. If Carol becomes famous, what will it be for?
Being compassionate
11. What is Carol really good at?
Bringing joy and laughter to those around her. Being a true friend
12. What is Carol not very good at?
What? She’s not good at something?
13. What does Carol do for her job?
She is a teacher
14. What is Carols favorite food?
Mexican
15. What makes you proud of Carol?
Her ability to laugh in the face of adversity
16. If Carol were a cartoon character, who would she be?
Miss Spider
17. What do you and Carol do together?
Laugh, cry, sew, play with the girls
18. How are you and Carol the same?
We like crafty things, we love our families,
19. How are you and Carol different?
She is WAY more outdoorsy and adventurous than I am. She is a much more understanding and compassionate person
20. How do you know Carol loves you?
She is there when you need her
21. Where is Carol’s favorite place to go?
Anywhere with her family.

It's been a week...

since being the diagnosised. ONLY a week?! My life has changed so very much already.

Look at some of the beautiful things I received from my students and colleagues & principal!
THANK YOU!
Seeing my cheerful, perky friends/colleagues today was a bit overwhelming at first. They looked so lovely and healthy! Bursting into my home carrying bouquets of flowers, bags of presents, piles of greetings from students and staff! Tears came too easily to my eyes and they both jumped to my side at once with their loving comforting embraces. I felt so sorry for them to see me like that...but that's my day...all day long...a roller coaster of emotions. And I'm used to it now. So much as changed in a week!

Everything you all gave me was perfect Slottshöjdens!
I will use my gifts and know that you all are keeping me in your positive thoughts.
**********
After May and Maria had gone back to school, Maya came into me as I was absorbing sunlight on the couch lost in thought about all the wonderful things I received. She was so curious about all the cards and presents. We looked through them together, she's especially smittened with the book of sewing ideas! She wanted me to read the cards to her so I did. So many of the students wrote "so sorry"...she picked up on that and asked if they were apologizing for laughing at me when I couldn't climb the rope at gymnastics class. What? but then I remembered my father-in-law and I were telling each other last night at dinner about what we hated most about going to elementary school gymnastics! Neither one of us could climb a hanging rope. "No baby", I answered, " They are sorry because I'm so sick and I can't be their teacher just now."
Then THE QUESTION I've been dreading...
"Can your sickness make you die?"
Oh Please God, I thought ....don't let me cry while I answer her.
Deep breath, "Yes it can, but it won't because I have lots of things I still want to do in my life...I want to sew things with all my fabric (start with an easy thing), I want to plant lots of things in my garden, I want to watch you grow into a beautiful woman and I want to be old with Pappa and move our bed into the TV room so we don't have go up and down the stairs." (She thought that was funny.) I asked her if she wanted to know the name of my illness.
She nodded yes.
"It's called cancer," I replied. Maya made her hands into fists and PUNCHED the air...
"And YOU ARE GOING TO BEAT IT, aren't you Mommy?"
"YES my Sweetie, I AM! I AM!"
And then my tears flowed freely down my cheeks...

But not for long, because we had to eat lunch, clean the fish tank, and stick these little stickers into the Coop booklet so Pappa can get the knife he wants. (It's like a S & H green stamp thing for a short promotional period.)

Maya is not well, fever, cough, running nose...she's got a cold again. So it was a PJ day as you can see in the photo. This is not good...I'm pumping vitamin C and Airborne into her and me. I MUST be strong to start chemo! The mail arrived...a letter from the hospital. An appointment next Thursday for ANOTHER retroscopy (don't know if that is the English spelling, it's not the Swedish! but it's the rectal exam). The huge plungers they sent to stick up my butt to cleanse out before the exam were enough to send me into another anxiety attack! If I could I'd like to be totally drunk when Bo helps me put them in (remember that phrase when you get married?..."for better or for worse, in sickness and in health"...well Bo, lucky guy, is getting a LOT of the WORST part!) but I can't drink alcohol now. I'd rather not eat for a whole day before so I"m empty than have those things go up inside the most sensitive part of my body at the moment. SHIT...and I mean it, SHIT SHIT SHIT SHIT SHIT! I HATE IT! On the bright side....it's spring for real now...chilly still but the daffodils are poking up out of the ground. Crocus and snow drops are blooming! We picked out a ceiling lamp for the bathroom that will be finished any day now. And my in-laws are here and helping as best they can with their own tired out sick bodies! Maya is in good hands when I'm down or occupied. That's the most important! Bo has "his" people to talk to when he needs them. And now, it's time for bed. I have a cuddly visitor with me tonight...I'll have to make sure her germy breath is facing away from me. Bo is working night shift. I'm covered. I'm loved.
And I again Thank all of you

Taboo things

Ever since I've been diagnosed with cancer my language has usage has changed a bit. Sort of reminds me how I have always kept my swearing in check because I'm a teacher. (Always trying to be the good model of acceptable language!) So when I do swear, those who know me well, know that I'm really MAD, FRUSTRATED or PISSED OFF! Using or not using Swear words hasn't changed for me....but those phrases that involve death, dying, killing and cancer have suddened ceased coming out of my mouth. You know what I'm talking about....phrases like "The wait is killing me!" or "I'm dying to see that new show." or "I just about died laughing." I used to call the little sweetner tablets "cancer pills" for my coffee. Yes, those phrases were about to come out but they stopped in my mouth and were immediately swapped for a similar phrase without the fatal reference. As for those little sweetners...I'm hardly drinking coffee now and when I do I'm using unrefined brown sugar. (I have one little cup a day...for my pleasure, not my health.) Another taboo....on facebook & on email I filled out two different "bucket lists" several weeks ago before my diagnosis. If you are not familiar with these lists, they are a list of activities, travel destinations and life experiences that a person "should" do before they "kick the bucket" (a phrase meaning "to die"). Well on BOTH of the lists I had experienced, travelled to, or had done nearly everything on the list! At the time I felt a little odd...now, if I think about it too much, I'm a little freaked out. WHY did I fill out those lists? A few friends had agreed with me that both lists were rather lame, incomplete. There are SO MANY things to do in life...they can't possibly be put on a list to be emailing around cyber space! I'm never going to fill one of those out again!

This morning two of my English teaching colleagues are coming by...May and Maria. Each has taken over one of my classes. We need to talk about a few things and I have a bag of stuff to give to them to use with MY kids! (oh how I miss my regular life!) Looking forward to the short visit...so maybe I should get dressed now!

Thank you for all the emails and comments!
I appreciate each one of them! :-)

I have the most wonderful friend....

I met Kelly Sue in my first year living in Sweden in the "Swedish for Immigrants" Class...we were like soul sisters from the beginning! (She appears in my blog a dozen of times, at least!) Right now I won't go into a rambling about her and her wonderful husband, Peder, and 2 adorable daughters...but I am so very, very grateful she's in my life!

KS is an operating room nurse... Angel on Earth! You would not believe how many questions she has answered for my family about health issues over the years. Whenever something is not quite right my husband says "Let's call Kelly Sue" I often think she could open a website of her own to direct people to the solution to their medical problems. Unfortunately, I was not honest with her about all that I've been feeling inside of me over the last 5 weeks or so...she would have made me go in to the health center much sooner. I was embarrassed and thought I was just having too much constipation. (never be embarrassed to find out why your body is not working correctly!)

Kelly Sue's latest question answered:
What's so important about whether the cancer source is in the rectum or anus?
If it's in the anus...we start with radiation. If it's rectum....we start with chemo.

I better go read about it some more...Janet, from my Bookworms group, sent me two helpful books about cancer. One is humorous, the other serious. (Thanks Janet!)

Now I'm trying to be patient...those sleeping pills I got worked well but when I woke up my organs didn't like that I stayed in one position all night. They SCREAMED when I tried to roll out of bed! I'll only use the sleeping pills when I really need to...didn't like this morning wake up! I've got to remember what Marcus Lisle told me to mediate on first thing in the morning....those golden webs around my cells, changing and mending! such a lovely thought! Thanks Marcus!

No ordinary day....

I got the phone call we were waiting for today....here's a summary. • more investigation is needed to determine if the source of the cancer is the rectum or the anal canal....now if you were to look at a diagram of this delicate area..you tell me what the heck the difference REALLY is...I say let's blast my HOLE AWAY! (ok, maybe not with a cannon shot....but you know what I mean!) • she was concerned about my pooping...see, it's very important! I am to continue with 3-4 bags of Movicol a day with PLENTY of water and an oral laxative. Just so you all know, I shouldn't have really solid poops anymore...because they are incredibly painful so the meds keep them very, very soft. (By the way, if your poops ever look like long floppy thick pencils...this is NOT GOOD--go to the doctor, don't be embarrassed. One of my Posty Pals asked me to list my "warning signs" or symptoms...I'll do that another day in detail for those of you who are interested. But that was one of them that I happened to notice...'cuz really, how often do you look at your poop..before you wipe!) • she was very concerned about my nutrition and eating (which yesterday, being a horrible day, I didn't do hardly at all and I lost over a kilo --not good), I am to eat with the intent to be healthy and strong to begin chemo, I will be meeting with a nutritionist early next week so I will get some power nutritent liquids to drink....meanwhile I am to take iron tablets (ones that won't consitpate me) to strengthen my blood (and it didn't help that I started my period yesterday which was probably part of the reason I felt so wiped out and painful...sorry guys but you're learning about my poops, why not all the details that are important!) • she also asked about my sleeping and anxiety...so I got meds for both of those troubles...only I want to take it easy on the anti-anxiety ones because only want to use them when it's really bad so I don't rely on them to soothe my fears...I really want my MIND and HEART to be in charge! not the pills! but I'll have them just in case.... • the cancer team will be meeting on Friday to investigate my case more thoroughly and try to determine the actual source • bravely, because Kelly Sue told me I must, I asked her if there was any more cancer elsewhere...after looking at the CT scan again she said there were some inflamed lymphnodes in my stomach but they didn't know yet if those had matastasized. (should have asked if they were going to investigate...but that's probably why I go in next week for more tests) • I asked her when the actual chemotherapy would start because I AM READY NOW! and she said probably in 1 to 2 weeks. She said that this had taken some time to grow so 1-2 weeks wouldn't make a difference! I gotta trust what they say...but when I'm there next week I will be armed with more questions! So there you have it...I'll be sleeping better, eating better (hopefully) and less anxious....but STILL WAITING! WAITING! at least I'm home in comfy clothes, near the bathroom and laying on the couch and NOT groaning in pain because I promised her I would take the full dosage of painkillers! (I was avoiding them for fear of upsetting my stomach.)

**********************

The second post of the day....this is not my usual style but I'm so stunned by the GENEROSITY of the people around me...all around me...like all over the globe around me! ...so I had to do another post. John Clark...what a sweetie! You know what you did but I won't reveal it here. (it will be a surprise for the other GHSers later!) The florist called from our little town...to ask if it would be a good time to make a delivery of flowers. My immediate thought was "how nice of my parents but why did they waste their money when they are coming so soon". THIS ABSOLUTELY GORGEOUS BOUQUET is from some of the "repeat" families of my Grade 4 & 5 classes..."repeat" families are the ones who I've already had one of the siblings years before. The AWESOME FOUR FAMILIES who sent me this had children in a class I had 2 years ago and now I have the younger kids this year. (In my school I teach both Grade 4 & Grade 5 English, so I have the kids for 2 years in a row and when I've had their siblings I feel like I really know the parents. Those are usually the kids I have the least trouble with, too, because of that connection. I think.) Anyway, I was totally stunned! And I cried and cried...partly because I really don't think I deserve such recognition and mostly because those are the same families who were very upset with me when I took a sabbatical term off to study Swedish properly (which was MUCH needed!) just when their second child was going to enter Grade 4. When I returned to work after that fall term away, each of those families asked me if I was going to teach their children to the end of their 5th grade year. I PROMISED them I would....and now I'm not. Lesson: don't make promises you can't keep...life is full of detours! I wish more than anything that I COULD be there with that wonderful class that is so excellent in English ...my best yet! (ok, I'd be lieing to you if I said that because EVERY class I've had is the BEST YET!...I've loved every single one of my classes for better or for worse!) So I'll enjoy this bouquet with all my heart remembering ALL my kids everyday and wishing them well in their English studies! I really believe they are in good hands! My next surprise was this little tiny package....from my former colleague who I've been making the quilts for! (the twins!) She and her mother sent me this small little bear carrying a teeny-weeny bouquet. Her name is Carol and she was born on St. Patrik's day (March 17). I'll take her with me to chemo! THANK YOU Jennifer and Cathy! I love you, too! And soon I'm coming with a gift for those marvelous babies! (pretend you didn't read the above...and act surprised!) Inside a letter from Denmark, I received a LIVESTRONG arm band...from the Lance Armstrong Cancer Foundation! (another winner for my list!) My Danish/Egyptian/Swiss cousins sent it to me....with WHOLE HEARTED DESIRE that I, too, can LIVE STRONG LONG! Thank you, Benjamin, Elsina and Philippe & the rest of the team!

And now my ramblings.... This is a photo I've been meaning to post for a long time...it's from Mid-sommar 2008. I LOVE THESE LADIES! On the left is Julie, from Gainesville-my home town, she's a cancer beater! She's taught me so many things over the, I don't know, 38 years? I've known her. She patiently taught me to play Mahjong (Chinese style and American-chinese style)...a game I love to play. (NOT on the computer but with beautifully carved bone tiles that you hold in your hand!) Julie, at the moment, has become a ROADRUNNER to help my parents prepare for their trip to help us! Thank you, Julie! Ana Maria (to the right of my mom) has constantly encouraged me to BE CREATIVE if that's what my spirit needs! Since I've moved to Sweden, she has influenced my life in many ways, she has given me so much support and guidance when I was going through the culture shock of living in Northern Europe! Thank you, Ana Maria! I want to hear about your adventures in West Dean England! During this new health adventure, I will use my creativity to soothe my spirit and strengthen my desire to over power this beast inside me...because I'm not finished using up my stash yet! I've got DECADES worth of fabric to use up! ************************** Speaking of creativity.....this will be a WISP (work in slow progress) that I'll take with me to chemotherapy, if I can sew during the process! It's a picnic table cover....I started it on one of my trips to Sweden to visit Bo back in the days we were living on the opposite side of the world from each other. Probably in 1998. While Bo was at work in the nights, I entertained myself with sewing on his mother's old machine. Most of the projects I finished...but not this one. I saw a cute idea on SEW-AMY's blog with ants....so I think I'll embrodier some ants around the water melon...it'll liven it up and add a little humor to the pieces. It's good I didn't finish it before! It will be better now!

Rhonda made an emblem for our POSTY PAL fabric postcard swap group! GREAT!

Vicki and Holly sent me these fabric post cards this month! Thank you Posty Pals!
I'm not sure if I'll get around to making a FPC this month but I'll try....no promises.

Just because I mentioned it before...but didn't show the photos....Maya and I found a record 18 golf balls a week or so ago in our side yard! We have quite the collection...so if anyone near by needs some..let me know! Many are NEW! The EASTER Swap deadline is soon approaching....so these WISPs shouldn't be too hard to finish so I can send my person her Easter gifty. Oh gosh, where did I put the address? ...no worries....I know!