Tuesday, March 31, 2009

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!!

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! ;-)

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!)


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!


Sara said...

Happy Birthday To Miss Maya!!

You sound so frustrated dealing with the drs. Keep in mind that they are dealing with not just you, but many frustrated patients like yourself. And definately keep track of everything your on, need done, have had done etc. They make mistakes too!
I always have someone go with me to appointments because you are in shock and will miss something. The other person can listen and get the "good stuff".

Glad Maya seems to be taking everything okay. Let me know if there is something I can do!

mbduke said...

All that waiting must be terribly frustrating. Everybody send Carol post cards to give her something to do!!!!

sam said...

Happy Birthday Maya! Funny how our children's birthdays become the way we tell time is passing by and we stop really caring about our own birthday so much.

Well all the waiting at home has one important silver lining inside the cloud. Maya is at that age when memories are so vivid....time goes by so slowly when you are 7 so the little moments in the bathtub become shining big memories of special times with you.

DO you have special memories of those slow days in 1st-2nd grade? Each day seemed to stretch forever and when they would tell you that christmas was a month away it seemed an eternity. That was the year that my mother started having tea ready for me when I got off the bus which made me feel very grown up. We would go over my day and her day and it was simple and not, from the point of view of an adult, memorable--but for a child it was. The chick outfit is sure to be one of those lovely memories that she will bring up years from now and you will be so surprised that she "remembered".

Big hugs and kisses from Arlington.

Sheryl(Katz)Goldenberg said...

Remember in high school that you,me, Sara Jane and Mary got shirts and made ourselves part of the Muppet Show? Please write back to me at kgoldenberg1@comcast.net and tell me who everyone was. I'm very glad that you have a network of friends and family to support you. It helps make the waiting easier.

Anonymous said...

Happy Birthday Maya!!

I'm so sorry for the delays nad conflicting information. It is very hard...remember oxygen...lots of it.


holly said...

Happy Birthday Maya!

Sorry to hear that things are moving at a snails pace for you. Nothing is ever as fast as we need it to be when we are waiting. I wasn't blessed with patience. Still saying prayers for you and hoping you get good news soon.

may said...

Just take it easy and all appointments will be coming ur way after Easter. Think of it this way, you have 1 more week to relax and drink your drinks.
Everything at school is fine and time is flying! Next week at home is needed to get recharged for the last 2 months!
Take care and don't forget to keep nagging on the doctors and calling them, it helps they say :)

lizardek said...

Geez frickin' louise, Carol. Tell them to shape the hell up. :(

jessica_sundell@hotmail.com said...

En jättekram från mig till dig Carol! Du ska veta att det är enormt tomt efter dig på jobbet. Alla saknar dig, lärare, barn, föräldrar, ja ala! Finns med dig i tanken!! Behåll modet uppe, du är enorm!!


Rhonda said...

It does seem that you, the patient, knows more than the nurses and doctors at times. Hang in there, I'm always praying for you and your family.....and keep laughing as much as possible.

Sandi said...

Happy birthday Maya! Have fun with the easter festivities. Would like to see a photo of you in your easter chick costume :)
It must be very frustrating for you Carol, just waiting....waiting - hang in there. Thinking of you.

Lori S-C said...

happy Birthday to Maya! Wow, 7!

I think you are talking about Chi Gong. I have a friend who is a healer and I will ask her about what you can do with that. ALso, I will ask her to do a distance healing...
The rest of the books went out a few days ago, according to Amazon. Hopefully they will be there soon.
thinking of you...