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!)
***************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!
***********************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!)