Thursday, March 26, 2009

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 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...

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!


Anonymous said...

I was up this morning at 3 (9 your time) and praying and sending as much positive energy as I could.

Hugs Gail

Lori S-C said...

Good update, feeling very optimistic about the quality of care and the kindness of the providers. Healing messages being sent your way!


SewAmy said...

prayers coming your way, looks like you have a full schedule. Keep smiling.

Anonymous said...

Hi Carol! So glad to know what's going on...I learned of your diagnosis the day before we left for a 10-day trip so I've been so worried not knowing what was happening. Thank you for taking the time and energy to keep your blog going so those who love you can know how you're doing. I'm so happy your parents are there. Wish I could do the "Southern" thing and bring you dinner. A big pan of some comfort food (that you could eat 5-6 times a day). I am sending you postive thoughts and lots of healing energy. You are in my heart, my friend. Love, Catherine

P.S. I'm finally joining the 21st century...I have now have a Facebook account and will send Natalie a blurb for the GHS blog. I'm still learning how to post photos...I learned that as the family photographer, there are NO photos of me! A family shot will have to do. Cheers!

Marie said...

Sending lots of prayer and love to you and the family keep up your positive attitude my friend. Hus and love, Marie

Desiree Mastracchio said...

Carol, it sounds like you have an awesome medical team on your side. Fight, fight, fight! Sing the Gator Fight Song to yourself and imagine Tim Tebow throwing the football/chemo/radiation for a TOUCH DOWN (complete CURE!)
Love Des

lizardek said...

Your med teams sounds really great, Carol. I'm so glad! I think that makes a great difference when you have doctors that you trust, and who are doing everything to find the best solution to beat this!