Bird Party Update

The bird birthday party sort of wiped me out although the dynamo grandparent team of 4 plus Bo did nearly all the work. In the morning, as I was having a lot of pain, I broke down into one of my bad crys and Bo took me to my couch and said, "Carol, I think you still haven't accepted the fact that you are really ill, you can NOT do all the things you want to do now, you must let us do it, maybe it won't be perfect the way you want it but at least we'll try our best and you must accept that, next year you can do more but NOT NOW. Please stop worrying and relax so that you can have energy for what's really important today and that's watching Maya enjoy her party." He's right, I know. Part of me thinks I can still do but I really can't. I get so frustrated.

Maya did have a lot of fun and that's what counts. Her friends were so nice with her and each other, so no problems. We have always had the rule that she can invite the number of children that she is old. So this year she was excited to invite 7 of her closet friends. It makes it so much more managable then having the entire class or all the girls in the class. (many of who have not treated her very nicely at school) Maya has always been one to have just as many guy friends as girl friends so it really isn't her party without a mixture.

One of her favorite friends, Jakob, flew into the party as a black crow! Maya was THRILLED!!!! (Later he gave her a bag of sunflower seeds as one of his presents...what fun!) They played a lot on M's swing set first, then tried to push Pappa into our pond. When they came inside each child made a bird mask (with feathers, sequence and beads) and decorated a pair of toilet paper binoculars (for the bird walk that we didn't have time for!). Next they played "Spin the birdie" to see which present Maya would open up. She got all different things and she was so pleased. One little boy was so cute...a guy after my own heart....he wanted to take home the wrapping paper his gifts were in (very good taste, I might add). The cake was a huge success...8 little birdies sitting in a nest, 4 with baseball caps on, 4 with princess crowns. It was very yummy! We still have half the cake so if you come over you can have a piece!

Since the masks were dry they were able to put them on to go outside again, but the time was nearly finished and we needed to do the "Fish Pond" (fishing for goodie bags). Maya got a little upset because the parents came on time and we hadn't done the raw egg race or the bird walk but we told her we could do it again another day! Bo and I realized that this year was the last for the "fish pond" because they are out growing it. (We'll do a treasure hunt next time.) Everyone stayed a little longer playing in Bo's tent , running around the swing area, and looking for the real fish in our pond. Lots of smiles and the weather couldn't have been better for mid-April!

I will post photos if I can....but I'm having trouble with my photo program as I have too many photos loaded up. (14.000 oucsh!)

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Sunday I took it easy...my mornings have not been so good and I have a lot of pain. I think it is related to what's happening in my digestional track. Gas, poops, whatever....once it comes out eventually I feel better. Early afternoons around 13:00 I'm usually ok. I try to take my whimpy walk then. I can't believe how weak my body has become in such a short time.

My big outing today will be to get medusa (my hair) cut a little bit. I'm dreading telling my hair dresser. I've gone to her for about 8 years. It's always hard telling people the first time...I usually end up trying to make them feel better!

What a GOOD FRIDAY for us again!

A nervous morning was spent here in our yellow house, pins and needles were everywhere after I got the phone call to come into the hospital for the results at 1:30pm. My anxiety was high and I wondered if I should have a relaxer pill but decided I wanted to be "me" for the meeting. While Maya was at her "Swedish 2" class (she receives extra Swedish language lessons on Fridays because our primary home language is English), my Dad and I took a walk around our garden and admired all the new growth coming up through the soil and budding on the trees. The rabbits haven't done nearly as much winter damage as previous years....but still, darn things have to make their mark, don't they!? It's the most I've walked outside in a long time. Dr. Down-to-Earth said I must walk everyday despite pain to avoid blood clots. Will do!

Our house is full of stairs and I'm noticing more and more that I avoid them. Going down slowly is no problem but going up I feel like I'm clumbing in the Andes Mountains (gasping for breath, legs wobbly).The doctor told me today my shortness of breath is due to the low blood value.

After lunch, with nervous teary but positive outlooks, we said good bye to Mom, Dad and Maya, then Bo and I headed out to hear the results. I was feeling so good that I was able to sit up the whole car ride and enjoy the sunny views! To get diagnosed in the spring was a miracle to me...I don't think I could have held up heading into the dark winter months with this illness.

At the hospital we were met by Dr. Soft Swede and Dr. Blue Lagoon who took us into a private meeting room. Dr. Soft Sweden asked if I wanted to take it in English or Swedish...English I replied with relief. (That eliminates one obstacle for me...even though I understand most of what is said, my replies are slothish in Swedish and there are so many new words I'd be asking for clarification all the time.)

So then he proceeded to tell us this about the MRI and Biopsy tests & treatment:
1 - MRI showed that my cancer is anal canal cancer (very rare in Sweden 400 cases a year and rare in the USA at 5,000 cases a year) and NOT rectum cancer.

2 - This anal canal cancer is the "mother tumor" which has matastisized to my liver in three places. The biopsy confirmed that the tumors in my liver are the SAME CANCER which makes it MUCH EASIER to treat. (yeah!)

3- The anal canal tumor is ....well picture this....an 8 cm (3.2 inch) long garden hose with 2.5 cm (1 inch) thick wall that is split length wise (it is not a full circle) lining my anal canal. Now can you fully understand why it's been so darn difficult to poop!? No wonder my poopies were so weird...they were being squeezed through that tube like play dough! Of course, not all of this hardness is solid tumor, some of it is inflammed tissue/hardened skin. (remember I mentioned before that anal canal tumors are attached to the skin organ) So basically, for a couple of slow growing years I've been sitting on a garden hose up my butt! OUCH....why didn't I feel it before just 2-3 months ago? I still don't understand that...but it's too late to go back!

4- This type of cancer is SLOW GROWING....so my vivid imagination fueled by my intense pains have not been true...in my head I've had this image of my tumors taking over my entire abdomen and chest. Since my first CT scan to this latest MRI there hasn't been any measurable changes in my tumors. (yeah!)

5 - I did not ask what "stage" my cancer is...maybe I'll ask next week....maybe I won't. Do I really need to know? Won't it scare me?

6 - My blood counts are too low but having my period this week during the biopsy has an important role in that. More tests will be done with the oncologist before chemotherapy starts as they may have to give me a blood transfusion beforehand.

7- I was told that having my extra kilos will serve me well in the near future as these extra kilos, plus my "youth" and my general healthiness will give me strength to endure what's coming next....

At today's Cancer Team Meeting, the oncologist was handed over my case officially although this doctor (who I haven't met yet so I can't give him a nick name yet) has already been in several meetings about my case over the past couple of weeks. So plans have been made....

1- I will get my chemotherapy treatments in Lund Hospital (it's the "big mamma" hospital in Sweden).

2 - For the first rounds of chemo I will be staying in Lund Hospital for a week as they plan to fire me up with VERY STRONG dosages "plus some" during that week to hit both liver and anal tumors. In order to help me with the tiredness and nausea, it will be best if I'm there at the hospital with professionals around me. (I"m ready...bring it on!)

3 - After one week or so in Lund, then I'll come home for a 2 weeks rest.

4 - Go back again to Lund....depending on how I'm reacting to all the medicines will determine if I stay over night or not.

5 - It's a LONG, TOUGH ROAD ahead but the doctors were very hopeful that I could make it to the end successfully! ( I think by this point Bo was crying freely I didn't dare look at him because I didn't want to break down too!)

6- Treatment may start in 1-3 weeks but they assured us that it would make no difference in the final outcome! But that all was being done to progress and process my case as fast as possible!

7- From now on I MUST be extremely careful about coming into contact with GERMS! All members of my household are to wash their hands before touching me. No risks should be taken! (Tomorrow is Maya's b-day party, I must keep a distance and not give hugs!)

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Then we talked about other things....how our daughter was handling it. We explained all the different things we have discussed with her and her reactions. And about the journal books we have to let her express herself and children's books to read about cancer. (Thanks LORI, I can't thank you enough!) They thought we were handling Maya very well.

They asked me about my job. Although I cried while telling them about Maya, I completely lost it talking about my students. I NEVER GOT TO SAY GOODBYE TO THEM! It was Tuesday at school, I said I wouldn't be there the next day because I had a doctor's appointment (lots of groans and moans from the kids) and POOF....I was gone! No closure for me or for them. And now I can't go because I can't take the emotional stress and I certainly can't take the sickness risk. But I want to hug each one of them and say goodbye and good luck next year...especially the 5th graders. Our school ends at 5th grade, so many I will probably never see again. There is a possiblility I will see the 4th graders after I'm well later this year. Writing a letter isn't the same...several people suggested that I do a video clip but honestly, I want to see THEIR EYES and SMILES one last time! Anyway....I had a good ol' cry about that with the Doctors looking on. My actual job, I could care less about right now....I'm so tired and exhausted from pain I don't have room to think about it.

After I got myself back together about the school thing, we ended the meeting with funny stories of Bo's and my parents helping us out with each their own sets of painful health problems, hearing miscommunications, language misunderstandings but mostly of their steadfast teamwork to support us to make things easier for us. And most importantly how the LOVE of GRANDPARENTS has surrounded Maya with a solid, soft wall for her to feel, receive and give comfort when we cannot provide it for a moment. Bo and I could not be blessed with parents more perfect for this task than the wonderful ones we have in our family! No matter what comes next for me during the treatment to RECOVERY, I have no guilt or insecurities about Maya. She will be given the BEST of care from these funny old people we love so much!

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Tomorrow is Maya's "friends" b-day party! Everything is prepared.... I will stay my distance but try to participate a little bit. Will let you know how it goes and post some photos. (Thanks to Gerd for picking up the special cake for us!)

Biopsy went well

Just to let you all know that the biopsy procedure went very well today. I'm too worn out right now to report any more funny details about my day in bed (from 8:30 to 19:00) but I will try to give you more details tomorrow when I'm on my new morphine pain killers! (now that ought to be interesting! we'll see how I do!)

I met a new doctor today who is one of the team...we really liked her...very down to earth. She told us that since my case is 'advanced' (meaning that it has spread to my liver, not just sitting there in my butt)...the "older" doctors will be in charge of me. The ones with the most experience...she is one of them but she wasn't old at all...at the most 50 so you get the idea. I was concerned about my case being talked about by different doctors each week and wanted to know if there was a CORE GROUP in charge with MY case. She told me that she understood that's the way it is in the USA but it's not like that here, she did say though that I will have two core doctors (surgeon and oncologist) who will always be the ones responsible for the final decisions based on the recommendations of the group meeting. The surgeon in charge of me from now on is Dr. Soft Swede (who I've written about before). I REALLY LIKED HIM the last time we met when he looked up my butt! (then drew a diagram for me and explained everything in superb English--which calms me) So Bo and I were both very satisfied with this knowledge. Dr. Down-to-Earth also said that they will be pleading, begging and praying to the pathologists to move my biopsy results through the process as fast as possible so that they can discuss them during THIS FRIDAY's meeting! Halleuah! I'm supposed to be at home on Friday noon and after to wait for their phone call to tell us the results for MRI and biopsy. (No one call me on Friday after lunch, please!) At the Friday meeting the oncologist will take my case and prepare my treatment plan (which is already tentively in the works) so we can START the FIGHT. I cried when she said that and said "I"m ready to fight this" and she replied "We want to start too...and we want you to WIN!"
Can you see why I really liked her?! She's on my team!

That's the basic important information for the day....but I'll tell the details tomorrow if I'm up to it...some funny things happened.

Bo is the most wonderful husband...it's such a blessing that I fell in love with a chemical engineer who has a fantastic memory for numbers, medicine names, dosages, reactions, etc...he is always a step ahead and jumps right in with his questions. I feel like he's my "medicine care lawyer". So grateful he's on my team, too! I pray he can hold up through all of his worries because I really need him!

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Maya news: she FINALLY lost one of her front teeth! It fell out during the night and my Dad found her holding it this morning while she was sleeping! She is so proud! The American tooth fairy will come tonight (next tooth will be for the Swedish one!).

Her kindergarten class walked to the public library today for a tour inside and each child got a huge book about Monsters! A very appealing book for children...has the "bath tub" monster, the "closet" monster, as well as the truly famous ones...cyclops, werewolf, etc.

Thanks for all the extra thoughts today! :-)

Liver Biopsy today

We're up with the sun....early to get to the hospital at 7:30 am for the blood flow tests and others. Then it's up to the Cancer Department for my valium shots and other things....the biopsy is planned for 10:00 am. From the blood tests until the rest of the day, I will be in a bed. That means nurses will be changing my pads (for my period) and helping me pee & poop in a little cup on the bed! So glad I'll be on valium!

For the moments I'm bored and awake, I've got an 'entertainment' bag packed with iPod of my music & KellySue's iPod (maybe I'll finally finished the Carl Hiasson book "Skinny Dipping"), embrodiery, funny book, and comics from the USA that Mom mailed me a long time ago and I haven't sat down to read yet. I figured that was enough for one day and I'll probably be asleep most of the time.

Bo is going to stay with me as much as possible but he's very nervous, too, so he's got a little list of errands to run in Helsingborg: visit Peder, buy wheat grass seeds at Goodness, and visit my school to give Kristina, my director, important medical leave papers.

Nervous but READY to go through with this test because THESE tests will give the Doctors all the answers they need to make the decisions for the best treatment for me and my case. Just have to remember that the results won't be instanteanous, the pathologist needs time to do his/her job correctly. But soon...treatment will start SOON!

I feel GOOD today with an energy of a bright future! Hold your thumbs, cross your fingers, say an extra prayer, hold me in the LIGHT, cover me with Angels of Healing and send me POSITIVE THOUGHTS! As you have been doing all these weeks....today I need them a lot!

Love to all of you! I'm taking all my friends and family, real and virtual, with me in my head today to give me strength! Thank you!

A love letter to my brother, Tom

I was 5 and a half when my little brother was born on April 14th, 1969. But I had loved him long before that. He was my imaginary friend when I was a younger child in Peru. "Little Brother" had to have a cookie if I had one (yup, I got 2 cookies then!) and he had to be seatbelted into the car just like me before we drove off. I must have played a lot with "little Brother" as I was an only child until I was in Kindergarten.

Don't really remember much about my mom being pregnant, she lost two babies during the years between us, so I think she was rather cautious about announcing the news to me. But I can certainly tell you how exciting it was when I woke up one morning without my parents in the house and a friend/babysitter told me that my Mom was in the hospital having a baby! I talked to her everyday. I learned to write my LONG last name while she was gone. I ate at different friends' homes. I had fun without my parents but I really just wanted to see my REAL brother. Then FINALLY after three long days of waiting....my Mom was coming home with MY WISH COME TRUE! At school I must have told EVERY open ear that I had a little brother and HE was coming HOME TODAY TO ME! I ran as fast as I could from the carpool lady's house down the street...whipped open the front door to find Mom and little brother bundled up on the couch. My Dad made me wash my hands thoroughly and sit down on nicely on the couch, he told me to hold my arms out steadily to hold little Brother and Mom came and laid him there close to me! My heart thumping wildly in my chest....

I HAD A LITTLE BROTHER AT LAST!
Thomas Hansel Doughty In case you are wondering...he carries the names of both our grandfathers.
I have always loved his name, seems so strong,
wise and gentle as our grandfathers were in life.
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Tom and I played A LOT together once he was bigger (and more interesting) in the meantime, my Mom has written in my baby book that I was a great helper girl with my little Brother.
We built great palaces and forts from wooden blocks. We sang to all the Disney Albums. We made grand parties with all our stuffed animals. Tom cried on his 4th birthday when I went to school and refused to play with his new toys until I came home. We played Barbies together (with your action men and Ken doll). We slept in the same room even though we each had our own room, I was 10 and Tom was 4 when we decided that it was time to separate.

Then hormones came into the situation and having a pesty little Brother was, oh, so embarrassing during my middle school and high school years. That darn little Brother followed me EVERYWHERE....he spied on me and my friends, he TAPE RECORDER our conversations during parties, and worse, I HAD to "babysit" him when our parents went out in the evening. (Actually, it wasn't all that bad because Mom always gave us our food of choice, Arby's or crumbly hamburger.) We continued to play together despite the age difference....we dug huge holes to China in our back yard under our tree house, we played endless swimming pool games, we bicycled, we made messes, we had fun! (most of the time)
We went on a gazillion family trips each summer and holiday. We simultaenously enraged each other and entertained each other. (spit ball fights in the car, ugly face game)

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When my little brother graduated in 1992 from San Fransisco State University, I was much happier than on my own graduation day in 1985 from Indiana University. (The reasons for which I will not get into now.) Listening to the ceremony, watching my brother do silly but respectful things on the field below to catch our attention and finally seeing him receive his diploma were such proud moments for me! MY LITTLE BROTHER had graduated!! He had accomplished something my family, frankly, didn't think he'd finish! THIS was a major FEAT, whereas, my own graduation was basically a fact when I started university...I don't mean this in a snobby way, it just means that I stay within the box, usually. I do what I'm supposed to do...what's expected of me by my parents. When I have strayed out of those neat perimeters, I somehow really make a muck up of things. (rhymes with.....) My brother, on the other hand, struggled, studied, hated, quit, started again, enjoyed, learned, and finally acheived! No box with timelines for him! More than anything I wanted to PARTY ALL NIGHT LONG with him and his friends on his graduation day....but who was I in their eyes? The elementary school teacher big sister....boring!
It was HIS MOMENT to share with his friends...
but the JOY I felt for him was tremendous!
(notice that he was carrying a book to read during the ceremony, or was it his last term paper?)

Now I will reveal something I've never told to my little Brother....I admire him for his ability to follow his ideas and try something new, if it fails, oh well, pick up and start again. Sometimes it's a welcome change, sometimes it comes with a lot of hurt and sorrow and loss. He has done this time and time again and now I feel he is entering a stage when he knows what he wants and he's going for it. That's being 40, I think. He's found himself again but this time THIS IS IT! All his knowledge, creativity, drive, faith, and strong will to acheive will give him the success and happiness he has been searching for a long time!

On the other hand, the big sister has only had one job her whole adult career....happy with status quo, take no risks, follow along with what comes next rather than trying to make changes. Oh, you readers think...but you've done this, you've done that....you've moved to Sweden....the fact is travelling and adventuring are part of my hobbies, but taking steps to try something completely new as a career is a little scary for me, partially because I love my job teaching with students of all ages. I've fantasized many times about trying a new career...but the fantasy is only that. It stays in the treasure fantasy chest and only peeked at once in a while. Maybe some day.....who knows after I beat cancer, I may just have the courage to try something new! New adventures wait around each corner, you know!

My dearst Brother, you are the BEST a sister could ever have dreamed of for her lifetime! We have had good times to laugh at (Land of Cut the Cheese), we have fought like crazy (the Costa Rican machet incident comes to mind and the Princess Diana souvenir plate) and we have shared many quiet moments (walking in the rain with Maya under rainbow umbrellas)! I love you so much and I miss you so much. Your wisdom and knowledge about organic foods & proper excercise probably could have saved me from some of what I am suffering now...I wish I had listened to you more back in time. I am thankful you have faith in me now and continue to support me with suggestions (that I'm now following). You are a beautiful, kind soul and you are still my LITTLE brother even though (gasp) you are 40 years old today! No matter where you are or what you are doing....I'm always proud to point you out in a crowd and say
"THAT'S MY LITTLE BROTHER, the one I wished for when I was a little girl living in Peru."

Happy Birthday, Tom!

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Tom, I'm so sorry...my energy is wiped and I am having some computer memory problems again...maybe has something to do with the 14, 000 photos on my hard drive? help me!
I had full intentions of scanning all kinds of great, embarrassing and fun photos of you from my collection. Soon....then you will get your REAL present from me! xoxxo

Double Delightful

Double, Double Delight Monday!
Jennifer came with her twins and her Mum, Cathy, who is one of my favorite people! It was a double delight for me and I wasn't prepared for Cathy to be here too (Jennifer had told me she was working)...as soon as I saw them get out of the car I burst into tears! (remember I'm PMS!) It was so wonderful to see ALL of the Barkers!

The babies are GORGEOUS, ROBUST, and HAPPY! Colin and Amanda entertained us with their smiles, dribbles, and just plain cuteness! Jennifer is an excellent mum especially getting her long time wish come true! (twins= boy and girl) I was so pleased to see them on their little puffy quilts that I made for them! I hope they will have lots of fun on them in the future....and once they are walking they can use them for picnics, tea parties and matresses in their little indoor huts! Thank you Jennifer for sharing your treasures with us today! Next time I see them I hope to be more lively myself and be able to play with them! Maya loved being an "older" child, she kept bringing them stuffed animals to look at and she enjoyed their reactions! (later she told me that she did NOT want twin siblings!)

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One of my workmates is a kind, gentle, and very thoughtful woman named Mimmi (Maria)....I've been meaning to show this for some time on my blog but never get around to it. She makes these beautiful bouquets out of leaves...so simple, yet I think so stunning!
I miss you Mimmi! And all our small talks! Hug to you!

Here's one view of my beloved Crescent Beach....on a windy day...no sweat dripping on this day! Just thought I'd show it! I talk about it so much. My Dad sent me this photo last year. Can't wait to be back there jumping in the waves! Talked to my nurse today....feeling positive! Only one more day of waiting until the liver biopsy! She gave me a lot of details about what will happen but I'll wait to write about it after it happens then you'll get the REAL story! Thank you to everyone for your continued support!

A Good Friday

What a GOOD FRIDAY we had at Maria and Andreas's home outside in the garden! Thank you so much for inviting all of us! You don't know how much we appreciated the attentions, the delicious Greek food, the laughter, and your kind hospitally! I ate more that meal than I have eaten in long time! I felt so good!

Maria: I will call you to tell you this in person if I can manage to do it without crying...but I wanted you to know how wonderful it is that our friendship doesn't just revolve around work (we only talked a little about it when we were alone) and that during dinner my illness wasn't mentioned once! I Love you, my Aussie-Greek friend! Maya and Antonia enjoyed their individual servings of pannacotta and berries! We left Maya with her bike and helmet to spend the night with Antonia...what a treat it was for her! She's still talking about it! Antonia is only 2 months older than Maya but she's so advanced physically...a head taller, stronger, more balanced. We took advantage of the situation to see if Antonia would inspired Maya to ride her bike on her own....it worked! With a little more smooth road practice Maya should be biking without training wheels soon. Thank you Amilon FAMILY!

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Later that evening, I had to stop taking the Ibprophen in order to prepare for the liver biopsy blood tests. New pains started to come and I threw up my dinner (not Maria's food!). I was rather scared and shakey. Since then I have not had much energy. I took it easy on Saturday only helping a little bit with the Easter rabbit preparations. Rested as much as possible before Maya came back from Antonia's so we could dye Easter eggs together outside in the Florida room.

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Sunday we had the Easter egg hunt (which is not a Swedish tradition) in the forest behind our house. Each year we invite the neighbor's 2 children to join Maya and it's a lot of fun.

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Off the ibprophen is awful...new pains along my left breast, breathing is difficult--being poked in the side--, back ache, and on top of everything I'm PMS. It just doesn't seem fair. I keep repeating to myself, this will pass, this will pass, I can survive....I WILL SURVIVE!

Looking forward to a visit tomorrow from a former colleague, Jennifer and her twins! I will finally give them the presents I have made for them! Will definitely post photos of that special event! :-)

On Monday afternoon, my in-laws will come to celebrate with Swedish style Easter food...I'm not sure I can sit at the table with them...somehow the pickled herrings that I usually love do not appeal to me at all at this time. But I can handle the hard boiled eggs. There's hope! No snaps for me this year either! next year!

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Crafty News

Each year I try to participate in a FAWCO fund raising event by making a quilt square or two (or 3) based on a theme. After we send in our squares the organizer always sends us a colored print of the completed quilt that was raffled at the International FAWCO Conference. This year's theme was "Save the Planet" and my contribution was the little polar bear with orca friends on the top row, second from the right. FAWCO is an NGO of the UN...Federation of American Women's Clubs Overseas.

Survived the MRI

Adjusting the pain medicines this morning was EXTREMELY difficult for me (see previous post) but I managed to hold out until around 9:30 for the full dosage to make sure I was comfortable during the whole MRI procedure...it would have been pure hell to run out of meds while I was in that noisy tube! OK...so, here's the MRI story....DO NOT exam my hair at closer view....I sweat the entire time I was at the hospital like a dang race horse after the Kentucky Derby! When I sweat like that I get Medusa hair (as Bo has decided to call it), it's not at its highest in this photo but you kind of get the idea. I wake up with it nearly every morning now after the night sweats. OK...back to the story...the first hour was spent in my own private "get the poop out" room. My wonderful, faithful-through-the-worse husband administered the dreadful laxative and then we waited for the results, which were as they should be. Enough said about that. Then the technician/nurse Rolf (who couldn't have been a nicer man) took us over to the MRI area where he outfitted me in this lovely two piece outfit. The cropped pants were comfortable and I would have liked to take them home! (should have asked) The back of the pants had a velcro snap so the Doctor would have access to my rump. The gown was comfortable and a perfect fit! (I should have one of these at home too!) If I had known the outfit was going to be blue, I would have choosen a different pair of socks...but really...who cares when you're at the hospital! ? Next, I met the Doctor who went over, again, the MRI procedure. Rolf had already explained it to me but what the heck, I listened again. This Doctor was ONLY there to insert contrast dye into my butt. (oh lucky him!) Rolf held my hand tightly and Bo was kissing my sweating head while the Doctor was torturing me. SCREAMS! Once the dye was inserted I was back on my back again and ready to be photographed inside, all around. Several people had given me suggestions and related their MRI stories to me but as always, each person's experience is unique! I brought along a couple of CDs to play on their sound system, as instructed by the brochure I got in the mail. To avoid the claustrophic feelings, (and to avoid thinking about being in coffin!) I had planned topics to think about in the machine while listening to one of my CDs. They put on the gospel choir CD I got from Åsa yesterday with really up lifting songs on it! (Tack Åsa! Jag tycker om det välligt mycket!)

So there I was cozy in my cocoon, Bo vigilantly watching the top of my sweaty head (they had to change the towel on my pillow before we started!), ready to "drive to Crescent Beach" in my head while grooving to the spiritual rhythms of the music. Then the machine started! (Amanda at Scrandasnewland told me she has doozed off during her MRIs! wow) Could that thing be any LOUDER! Where was my peaceful, relaxing cocooning? First, I thought I was in the engine room of a steam ship for "3 minutes" (not the Titanic, please!), then quiet--oh, THERE's my music for 10 seconds, next I was at a party with the Aborginals of Australia--stomp dancing around the desert to the beats of a diggeridoo for "2.5 minutes", quiet again while they adjusted the machine view "Ain't no mountian high enough" for 15 seconds, back to the steam ship for "3 minutes" (Rolf told me how long each photo session was lasting.).

I forced myself to think about driving to Crescent Beach (after all, I was looking forward to the ride and the destination!) ...drive out pass the Gainesville airport, make a left at the "dangerous intersection", pass Melrose (wave at Natalie's street, even if she doesn't live there anymore), Putnam Hall to the right (count the guys at the corner, supposed to determine how high the waves will be--folk legend), pass the Bible Camps, pass Flora Home (where once I ran out of gas on my way home while hauling my brother's surf board and his friend's on top of our VW, dog and cat in the car- no leash or box, wearing ONLY a bathing suit and flipflops...I opened the windows just enough to let in air but not to let out the cat, wrapped a towel around me and started to walk 1-2 miles back to Flora Home, didn't get but 20 yards from the car when I good Samaritan- an older gentleman- stopped his pickup truck and siphoned off enough gas for me to get to a working gas station in Putnam Hall- he said to me "This is not a good situation for a young lady like you to be in. Always keep your tank with at least a quarter of a tank", I've always tried after that!), then....let's where was I on the road...oh, next Palatka (where one of our funniest family moments occurred while we stopped for gas and our "Fluffy" kitty got out of the car--image all four of us running around the streets of Palatka yelling "Fluffy, FLUFFY...." it was like a Chevy Chase Vacation movie scene--really bad but we found the cat!) , cross over the St. John's river....turn left towards Hastings...stop at County Line for fresh veggies (delicious!) and Bull Chips (made right there in Hastings...darn good...say the name as fast as you can & you'll see why we kids thought it was so funny), once I had a spin out in a rental car at the Hastings intersection while on Spring Break in college driving with my roomate, Dianne (do you remember?) and my exchange sister from Peru, Lucy....it was scary! Anyway....this is where I couldn't concentrate anymore during the "drive"...maybe the sounds of the machine were to great for me to over come or maybe the anticipation of getting to the beach was too much for my Florida homesick head. Then the final round of photos were accompanied by a tremendous racket of concrete street drills....ba babababababababab...babababababab......babababab...at that point I was getting REALLY HOT, sweat pouring off my forehead, making my face itch, the light over my head like the sunshine....so naturally I skipped driving the rest of the way to Crescent Beach...I was THERE! I was basking in the Florida sun mid-day like a fool that I was in High School..craving the deep, bronzed look we all wanted back then! It was a windless day and the concrete drills drowned out the sound of any waves that were in my mind. "Carol, we're almost over, only 2.5 more minutes." BABBABABABABABABABB.....BABABABABABBA..finished! Out I came from the plastic cocoon, absolutely SOAKED in sweat head to feet! Thank goodness I was wearing that gorgeous blue outfit! The results will be ready for my team of Doctors next week after Easter weekend. Then Wednesday....LIVER BIOPSY! Need for a plan of survival for that one! You know what's truly amazing? Look at this wrap around skirt (sarong?) that Betsy mailed to me from Hawaii just 3 days ago....YES, it's the map of Florida, including GAINESVILLE, PALATKA and CRESCENT BEACH! (there's even Randy Austin driving his race car!) What a great gift, Bets! THANK YOU! And what incredible timing...I had just decided to mentally drive to Crescent Beach when I received this package! Can you believe that? You're in my soul, girl! And to finish up this post....Look at what my darling husband bought me...my own COMFORTABLE lounge chair for outdoors! (it was a suggestion from one of you, but I can't remember who, sorry! maybe Kate? ) Now I can enjoy the outdoors even if my body doesn't want to cooperate! It very easy to tilt back slowly just using my feet...and easy to get up too! So that's it for today! We're going to watch a good funny movie Love and Lyrics (from Kelly Sue's collection, thank you!). Looking forward to seeing the Amilon family tomorrow! :-)
I thank all the doctors and nurses who helped me today, especially Rolf!

Nervous for today

I woke up with a new pain and I'm so nervous about today's MRI. It hurts to breath a regular breath......something, probably a nasty tumor or nerve is poking into my lungs when I fill with air at a certain spot on the right side. oh I want this to be fixed! I"m probably hungry...really hungry. I had to fast with only liquids yesterday to prepare for today's test. Not easting was actually rather easy for me since I don't find food at all appealing anymore but I feel like something else is eating me from the inside faster if I haven't eaten for the strength of my body. For breakfast I can have plain white bread and liquid. Looking forward to that! Drank 4 protein drinks yesterday and my wheat grass shot. I can eat again after the procedure at 1:00pm. Oh give me strength......patience, this too will pass. It's part of the battle I keep telling myself!

Tuesday's nice things

Very quickly...I've been on my way to the shower all day and I"m STILL in my PJ's at 9pm! I will finish this post later tonight! no promises...detours happen!

Thank you to my Easter Swap partner, TAMMY, for these cute surprises! I'd almost forgotten about the Easter Swap I signed up for "pre-cancer" although I've made one thing for my partner and I've communicated with the organizer (Bush Baby) a couple of times.....then a sweet package arrived from Tammy at www.onefrustratedmomma.blogspot.com....this is what was inside!

Thank you Tammy!

As always, my daughter wants to take everything from me but this time she remembered it was for Mommy! She really liked the SPRING mini banner...we'll put it on our Easter Tree. I love the little bunny and egg! But where did the chocolate go? Oops! (My Dad ate it!) Isn't this flower lovely? Purplely on the outside, green on the inside...only you have to lift up the blossom to see how lovely! It's a shy flower! This plant lives at the summer house where the temperatures are warmer than at our regular house.
A mighty fine strut on this peasant who was prancing proudly through our yard trying to impress his lady friend! (slight glare as I took photo through the window)
Pappa took Maya and her class friend, Julia, down to the beach to look for shells, etc. A little chilly but a lot of fun for both of them! The tide was waaayyyyyy out while we stopped by. I did walk out to feel the water..too cold! (I am too weak & pained to walk down from the house, my dad drove me to the beach side...pitiful!) I can't wait until the summer again to frolick in the waves avoiding jelly fish! LOL Doesn't Mom look so Nordic strolling along the early spring beachside?
We buy our fresh eggs here at a self serve nursery near the summer house! GREAT prices on perennials (20 kr. a plant) and 4 kr. for pansies and annuals.
Dad bought me a bunch of plants for my garden at home...we picked out ones that rabbits DO NOT like! (at least the plants they didn't like last year...who knows, their tastes might change this year!) Damn rabbits! Can you believe they're already digging up my rose roots? I hung our "pumpkin lady" upside down over one of them...might work! (you'd have to see my October posting to know who the "pumpkin lady" is)

Three good days in a row!

Today I can say that I think I've finally gotten my pain in control...after 3 days of "wake up feeling good" (not pain free, but MUCH better than thinking PAIN from the moment my eyes open). It's much better when I take my medicines exactly every 6 hours rather than waiting for the pain to begin and then take them. Someone (and I don't remember who) told me that was the key...to anticipate when they would start and jump on it before the pain got worse. I can feel exactly when the medicine starts to wear off at about 5 1/2 hours, so I lay on "my" couch (nest) and distract myself in some way (embrodier with iPod- music or story/look at magazine/read a bit of a book/play or talk with Maya or someone near by) then I slowly eat something before I take the new set of medicines...sitting up. (Bo is very insistent that I SIT UP) Then I snooze on the couch another hour (sweating and having hot spells) until the new medicine kicks in. After that...I'm good to go again! At night I find it best to take my first round of pain killers at midnight (after eating a bowl of Quaker Oats instant oatmeal-yummy flavored from the USA), those meds keep me relatively pain free until about 5:30-6:00am, then I wake up eat a digestive (like a graham cracker) to take the 6 am dosage, sleep (and sweat) until 7 or 8 am...then I wake up "feeeeeeelllling GREAT" (remember Tony the Tiger?). It's wonderful to wake up that way without any organs screaming bloody murder at me!

This is not to say that I am completely pain free....because "it" is always there reminding me. Like when you are pregnant and you know little sweet baby is there...but this is the opposite because it is not a good, warm feeling...it's a hard, tight, jabbing "I'm ready to gobble you up" feeling.

Anyway....we got good news today...TOMORROW is my MRI in the Angleholm hospital. I'm 'fasting' today, just clear liquids and my protein drinks. I'll be in the MRI tube from 30 minutes to an hour. According to the letter I received, I can take along my own CDs for them to play for me! good! My mind has come up with a list of topics for me to think about in detail while I'm in the tube as well so I don't get freaky claustrophic while they are photographing me.
Some of the topics are:
- remembering and describing little details of the exact route from Gainesville to Crescent Beach, Florida. (ex: Putnam Hall-count the people at the corner, Melrose-wave at Natalie's house, Hastings-stop for fresh veggies & Blue Chips, Palatka-stop for Dairy Queen frosty & gas, etc.)
- plan out Maya's bird party (already have the ideas but need to put in order)
- think of changes for my garden (think about what's already planted and what it will look like this year)
- design next quilting project
- image myself cancer free!

In the post today I also got the information about the Liver Biospy (capital letters as this is the BIG one!). On the 15th of April (next Wednesday) I have to be at the hospital at 7:30 am for blood tests but the actual appointment isn't until 10:00. I will be in bed all day since this organ is rather bloody and it will be well monitored for leaks after they puncture it! Unfortunately, I counted out my menstral cycle (I'm Ms. Regular-to-the-day) and wouldn't you know it...piss off if I'm not starting my period that same day! Thank goodness I will be on heavy duty anethesias!
(the spell check on my blogspot doesn't work...how do you spell that word?) When it rains, it pours...in this case, bleeds! (sorry guys!)

All of a sudden I feel like things are moving faster and a week doesn't seem so long anymore...I'm holding my weight more or less steady. I feel stronger and calmer. (I do cry a little every day though but not much.) The sun is shining! I have many events to look forward to in the next couple of weeks. I feel the love and support of everyone who knows me around the world! My battle amour has been polished and I'm READY TO FIGHT!

Later today I will post some fun photos about our outing to the summer house and my surprises from the post box from Tuesday and Wednesday!

Sunday with Cousins

Opening birthday gifts continued on Sunday with the arrival of Ulf and Olivia Nilsson from Köln, Germany! Ulf is my husband's other brother who owns a foo-foo wine shop in Hagen. He is one of Europe's wine masters (with title)! He always brings us wonderful wines to enjoy at the moment or some to savior in the distant future. The one he served last night, which I couldn't have, was exceptional apparently but he left a bottle for me to have after I've beaten this rotten cancer! I'm certainly looking forward to that! Olivia and Maya had a jolly good time outside as well as inside together despite their language differences. Olivia only speaks German with some Italian (her father has taught her Italian since he used to live in Italy for 10 years and he hopes she will be fluent some day--perhaps to take over his wine business?). Maya with her Swedish and English (and bits of Spanish) gets a little frustrated that Olivia can't speak SOMETHING that she can understand! But amazingly enough they find the way to communicate with each other enough to have a lot of fun together! Kids always do! Here they are preparing something that never flourished...but they certainly look artistic! They are exactly a year apart in age, Maya is older & slightly taller but Olivia is more muscular and tougher than petite Maya. Both are PRINCESSES! Although Pepe wore this tutu with pride, he wasn't such a cooperative dancer in the troope. He preferred to be a member of the audience!

With the right music, the ballerinas performed their best piece yet!
Bravo, BRAVO!

At the moment, (Monday afternoon) the cousins are out on a picnic with Farmor, Farfar, Papa and Pepe! I've taken the quiet time to sleep, take a walk (went 600 meters today! better than yesterday!), and catch up on this blog! Oh...here they come back!
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Farmor is COVERED with Maya's car sickness throw up! GROSS! But Maya is fresh in clean clothes and running to the swings with Olivia. Poor Farmor! (Maya reported that she PUKED ALOT!) It was rather obvious by the look of Farmor's clothes and hair (even in her ear!). Yuck!
Sorry to share so much but this blog tells it like it is! That's life!

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PS- Ever since our upstairs bathroom has been "in renovation" Maya and I have been taking a shower and sauna together in our basement bathroom. (We have very interesting sauna talks!) Before our Sunday guests arrived we were again doing our routine there in the bathroom, it is often difficult for me to bend down to pick things up from lower levels and Maya has proved to be quite handy to have around as she is so willing to be a Mommy's helper! I asked her to please pick up the dirty clothes to take them to the laundry room and she did it without a fuss. Then I asked her to hand me my socks and pants which of course she did without a fuss. So I said to her how much I appreciated her help, especially when I only had to ask her to do it once (instead of our usual bantering!). She replied, "I want to help you as much as I can Mommy so you won't die!" (choke! my heart flew to my throat!) So then I answered, "I thought you were doing it to be nice." "Oh and that, too!" she said.

I had the awful thought that if I do die she might think it was HER FAULT for not helping me enough! Each comment I make is so weighted these days. It's a precious line between the wrong and the right way to say something to her sweet little ego ...I just hope I will say and do more right things than wrong things.

Wheat Grass Power!

After the visit to the doctor on Friday it was time to harvest, grind and drink my first shot of HOME GROWN WHEAT GRASS! We mixed it with a bit of cranberry juice to make it a little less grassy, however I still felt like a customer at a cow bar! (Imagine a Gary Larsson cartoon...Carol with a bunch of heffers at a farm house saloon! Bar tender: "What'll you have?" Carol: "A Cape Cod Meadow shot! Moooony thanks!" ) Cape Cods are one of my favorite drinks...cranberry juice, vodka with a splash of lime. I'll have one as soon as I can! In the meantime, I'll be doing shots of wheat grass! The more I have them the more I like them! They are growing on me! (pun intended)Mom insisted that I be in the photo....I don't have on a bra so I'm holding my arm in a funny way to cover up my floppy boobies. At night I often take it off because it sits right at the bottom of my rib cage where one of the liver tumors is located so it can be rather irritating and constricting. Between the weight loss, lack of excercise and gravity I'm afraid some parts of me are sagging much too quickly!

Has anyone else tried wheat grass shots? It's not just for cancer.

Saturday April 4

Maya's Family Birthday Party
Our Guests: the Nilsson Family (Farmor, Farfar, Leif-Bo's brother),
the Doughty Family (Mormor, Granpa),
the Carlsson Family (Sophia, Caithlin, Kelly Sue, Peder)
and the Paerregard-Torres Family (Ana Maria, Karsten- from Copenhagen)
What a day it was with cake, Polly Pocket frenzy, Littlest Pet Shop dreams come true, West Dean Art Institue presentation by Ana Maria (one of my "crafty" idols), delicious dinner, and GREAT company! I was able to do some resting on the couch during the party...see my new slippers that Ana Maria made for me?

Mom, Dad and Karsten/Dad, Leif, Barbro & Bo/ Caithlin and Maya (Kelly Sue background) Every year since Maya was 3 she has designed her own cakes for me to make for her theme parties. This year she has choosen a "bird" party. (Her 'friends' party will be all about birds but the family party only has a hint of it.) She drew the design for the cake a few days before as you can see in the photo however, this year I wasn't able to cut the cake into the form she designed but we settled on just repeating her design on the top of the cake. Unfortunately, I was having a great deal of pain Saturday morning and had to rely on my Mom to frost the cake first, somehow I was able to force myself to make the decorative frosting with the colors and squeeze the design out. It looks better in the photo than in real life and Maya and I had a great laugh over it. She is very accepting of my limitations now. By the end of the evening I was exhausted but it was well worth the happiness the day brought my family, and especially to Maya! To be able to sit/lay down and chat with my family friends was uplifting for my soul and spirit! Thank you all!

Visit with Dr. Blue Lagoon

We went to visit Dr. Blue Lagoon today...all other doctors and nurses had already "left the office" by 13:00! He was the only one there waiting for us. Reminded me of the dedicated teachers who stay behind to have "just one more" parent-child meeting on a Friday afternoon. He was there because he wanted to see me and he was willing to stay as long as we had questions to ask and things to discuss. Today he smiled more than once during our talk but for the most part he was very professional and nuetral, as he should be. I'm too tired to write more tonight but I can tell you that Bo and I both felt a LOT better after our 1.5 hour chat with him. He listened to my lungs, which I had had some worries about and he felt around my stomach for all the painful spots. Everything normal for a person with 3 tumors on her liver! Low nightly fevers (38-39 oC), furious sweats after medications that last for an hour, and increased pain in my abdomen are normal for me. He did recommend one more painkiller which helped a lot today! (just a high dosage of ibprophen in between the other pills) The mind is a powerful muscle, he reminded me yet again, I must use it! Keep positive and use the waiting time to my advantage!

* REST * KEEP WEIGHT STABLE * MOVE & BE STRONG * RELAX * ENJOY *

Big day tomorrow...Maya's "family birthday party"! More about that later! Betsy- I will buy the Qigong dvds tomorrow over Amazon! Looked them up now and found quite a selection. Chose the ones by Gaiam. Thanks for the push! ALOHA!

Natalie- these people in the hospital already know me...from the dietician's secretary on the ground level to the nurses up in the cancer unit on the 3rd floor...I've spoken to a few on the phone and today I got the "Are you Carol? nice to meet you in person" chat! Felt good! Can tell they all want a positive outcome for me!

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Wishing all my colleagues and friends a GLAD Påsklov!
What gorgeous weather we will have this week!
Hug yourself and your families!
Be Healthy!

I was kidnapped today....

without a blind fold, no violence...treated with only tenderness and love! Kelly Sue came to take Mom and me away to see "something different" instead of the same four walls of the house (so to speak)...I really needed to GET OUT! and what a lovely day it was! Nothing exciting or wild...just a slow, quiet walk through Landskrona to search out fun shops, then a drive to see the many sculptures around the crocus covered parks. Later we drove to Helsingborg so I could visit a wonderful organic (ecological) shop called GOODNESS on Drottingsgatan, owned by an English woman who used to live in California! (Thank you Wiveka for the information where to find her!) I bought my first WHEAT GRASS SHOT, mixed with a bit of apple juice. YUMMY! No kidding! She offered me some other healthy tips for my liver as well as answered all my questions about growing our own wheat grass. (It's almost ready to harvest!) I will be back to visit her shop with more money in my pocket! (She sells organic cleaning supplies as well as food products and clothes, make up, etc.) Thank you, Kelly Sue for a great kidnapping! Just my speed at this moment! I LOVE spring in Sweden...the flower shops spill out onto the sidewalks in all shades of green and bits of the rainbow! When I came home there were a few surprises waiting....My Dad was finishing up a new fence around my little herb garden! I doubt there are any rabbits or hares that can get by this fence! Soon I can plant kitchen herbs, lettuce, and a few flowers to attract the bees and butterflies! The other surprise I will show you tomorrow....Bo is making more advances on the bathroom project! Today was Maya's last day of swim class until the summer. She's on the left with the cute new BIKINI that she got on her birthday...it's a size 7, a little big so it didn't really cover her correctly. She was SO pleased that André the scuba suit cutie instructor noticed her pretty new suit! (André is Maya's official first crush! Perhaps it is André but it could also be the scuba suit!) Mormor (Polly, my mom) put on her suit to continue swimming with Maya after the class and diploma ceremony was over. Yeah, Mormor! I sat around the side of the pool and talked & talked with my friend, Maria (Jakob's mommy...he's the one with the snorkling gear on). Maria asked Jakob what he was going to look at in the pool with his goggles on...he replied "I'm going to look at Maya's Mormor underwater!" (We had a jolly chuckle over this at dinner time...told Dad that Mom was still being checked out by the boys!) Anyway, my talk with Maria was much needed...our children have been friends since babyhood and they are in the same class together at school. Talking about life's OTHER worries and wonders was excellent therapy for me! Thank you, Maria! We should do that more often like we used to...the stories you tell me about your children always make me laugh! At the end of the swim time, we practically had to drag Jakob and Maya out of the sauna...what a pair of chatter boxes! Ah....wouldn't have anything to do with their mothers, would it? I must tell you all about the evening Jakob told his parents about my illness. (Maya had told him at school that I had a "klumpen i rumpan" and the poopies couldn't get out.) Some time after he told his parents about this, they were sitting at the dinner table and Jakob had a very pensive look on his face, playing with his fork with one hand, rubbing his chin with the other...deep in thought. They asked him what he was thinking about. He answered, "There must be a way to fix Carol's problem. If only a gate could be made to let the poopies out another way!" I told Maria that Jakob has taken his first step into becoming a medical engineer! What a love! Thinking about how to solve one of my problems! Jakob is already an accomplished carpenter with his own shop! Thanks Jakob! Maybe one day you'll be 'fixing' people! I'd be so proud!

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One last thing, because I've been thinking about it a lot today. I'll be honest, I couldn't relax during my nap because I was crying about all the people I KNOW AND LOVE who smoke.

If you are a smoker, PLEASE STOP! I don't care if you "just smoke at parties", or "at the bus stop", or "one a night on the balcony", or "just to release stress". Because CANCER doesn't give a shit WHY you smoke or WHEN you smoke or even HOW long you've been smoking. That smoke you pull willingly into your body KILLS, DAMAGES and RUINS your health! It CREATES a MONSTER inside you...a monster that you can't touch or grab and yank back out the same way you put it in there! I used to smoke "just at parties" and "just to release stress". I quit over 10 years ago when I got serious with Bo (xo). Thank God I did because who knows what other kinds of cancer I'd have now! I'm telling you NO STRESS in your life can cause the same pain, despair and fear that cancer causes in your life! If you don't stop for yourself...STOP for the people you LOVE and the ones who LOVE YOU! Believe me....you don't want to be in the same situation I'm in right now. I don't think my cancer is smoking related but it could have something to do with why my body was weaker for the cancer to take hold. Buy yourself a package of chewing gum, life savers, whatever...start walking away the stress....ANYTHING to avoid smoking! PLEASE!
I love too many of you who still smoke....
and you know EXACTLY WHO I AM WRITING ABOUT!
So STOP NOW!

********* This rant was brought to you by the Cancer Research Foundation which has proven beyond a shadow of a doubt that SMOKING causes Cancer! *************