Friday, April 17, 2009

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 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 my vivid imagination fueled by my intense pains have not been 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!)

Then we talked about other 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!

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!)


Helene M Mikell said...

oh Carol....admiration abounds! Give Bo a hug for me please...tell him he has a big, big fan club!
love, Helene

Tracey @ozcountryquiltingmum said...

How fortunate you are to have a loving and supportive family there for you! Being a teacher I understand just how you feel about the kids, very difficult to leave them.
Sounds like they all know what they are doing with your health, have a good party, hopea parcel arrives around that time! Tracey

Lori S-C said...

Okay Carol, we're all holding your hand as you take the next step into treatment. Feeling optimistic.
How about doing a skype session over the computers with your students? they can see you on the computer and you can see them! Then you can say whatever you wish while seeing their reactions!
We sometimes do that to talk to Chloe.

Sheryl(Katz)Goldenberg said...

I'm so glad that Maya has her grandparents to help you! I was also happy to hear about the results and steps that will be taken by the doctors. Although we have not seen each or spoken to each other in about 30 years,the computer allows us to communicate. You know, Sara and you were the first friends I met when I moved to Florida. You both gave me a warm,sunny welcome.

Amanda said...

What a relief to know exactly what the situation is (isn't imagination a pain sometimes?) and to know what the plan is. I know what you mean about not seeing your children at school. Ian (cancer survivor) had just been made head teacher at our school after being deputy there for about fifteen years. He did just half a term before being diagnosed and disappearing. That was hard on all of us. You've got so much going for you - a wonderful husband and daughter, terrific parents, youth and 'a few extra kilos' - which MUST help to keep you positive. Big hugs.

chrisi said...

hello Carol, the coming shall be also to created,even if will be not always easy, many good thoughts accompany you, everything loves ich täte dir gerne mehr schreiben, aber leider mein Englisch ist für solche gelegenheiten einfach zu wenig,alles liebe

lizardek said...

Your family is truly awesome, Carol, as are YOU.

I hope you have a chance to see your school kids again before too long...I think a letter or a video clip would help THEM, even if it doesn't give you the closure you would like. And you WILL see them, when you are able, so never fear!!

SO glad to know that treatment will be starting soon. Those 1-3 weeks (1!) will fly by, I bet.

SO MUCH LOVE to you!

Anonymous said...

Good news - even better than I was hoping for (remember I work with toxicologists who set limits for cancer causing toxics in the air). Tears came to my eyes while reading your post. So happy you have the love and support at home and now have a path forward.

It is looking good Carol, or as good as it can be. I know it will be hard but try to stay away from Maya's party today as it will be best in the long run.

Lots of prayers and positive thoughts along with deep breaths of cool Canadian O2 coming your way!!

Love Gail.

mbduke said...

Your prognosis sounds pretty possitive, all things considered. You are so lucky to have both sets of G'parents available. Now you can concentrate on recovery!!! I will be praying for you daily. Sending you love and possitive thoughts via cyberspace.

may said...

Such good news! I am sure that u will go thru this and u will be A O.k. Always, think of the ending, being done with all of this, adding your name on the list of people who beat cancer and you coming back to say Hello!
Carol, don't be sad about not saying Good-bye to the 5th graders, I have an idea, next year we can send out emails to all of them and we set a day to meet. It would be fun to see them and for them to see you just as the Carol they know. What da ya think?
Good Luck with everything,

sam said...

Thanks for all the details. I have been so worried the last couple of sounds like you have great doctors and care about all aspects of your care. And, you can't beat that family care you get...kudos to Bo and the whole crew.

Natalie Harris said...

Just want to hold you tight and promise that it is all going to be ok...wanting so badly to be able to make it all better...

Anonymous said...

Me da mucho gusto que todo va por buen camino y que todo sigue en forma positiva. Muchos besos para Paul (dad) and Polly (mom)


Sara said...

Wow, give all your wonderful family a big hug and my prayers! You have so much to deal with right now and they have all pulled together. Nothing like the love of family!

I'm thinking of you and praying for you everyday. Take care of yourself and be honest with Maya. Those are the two best things you can do (just my voice of experience!). Wish I was closer so I could hug you in person!

Holly said...

I am glad to hear that your treatment will start soon. It sounds better than expected. I can't imagine how you feel. Just take it day by day. You will get through this. My aunt has been through it twice and she is twice your age. God Bless you and your family. I am praying for all of you.

roxie said...

I loved reading your report about your doctor's visit. Sounds like a good plan and you are right Maya's grandparents sound like all you need to concentrate on is your recovery. My warm thoughts and best wishes will be with you. Roxie

pappawagner said...

HI Carol
By my own experience I can say that what you just gone through is mentally one of the hardest parts, Oh please do understand me, the rest won't be easy but now you know what you're fighting. It got a "face" and you can "spit in it"
We all, both parents and kids miss your smiling positive face and seeing you, slightly stressed running between classes.

Will write more soon. Keep fgighting

/Jan W

Anonymous said...

Hi Carol... Am following your blog and sure do appreciate the updates. You're in my thoughts and I'm sending you LOTS of positive energy. Sounds like you finally have a plan of attack - a focus and direction to channel your energy. Not knowing must be excruciating. Now you know, so kick BUTT (all puns intended!). Love - Catherine