Sorry there was no time for updates yesterday at all. We started out day off early, on very little sleep, yet again. Our first appointment was at 9:00am - ya, we know that's not that early, but we are beyond tired right now. That was with the neurosurgeon - really, really nice man!!! We chatted with him about surgery and possible side effects and such. There is a chance that people can die from surgery, we all know that, there is a chance that I can get an infection in my spinal fluid after surgery and then of course there are going to be the things that we are just going to have to watch for like having some balance issues and small little changes like that. He did say over time these things usually correct though and people are just fine.
Surgery is set up for Monday morning most likely at 6am. It will be a 3-5 hour surgery and I will most likely be in the ICU for 2 days after to just to be watched carefully for infection and making sure that my heart is doing ok and everything else is functioning like it should. Ken wanted to know if he should be buying me bibs and such... normally I would think he was really funny, but exhaustion just added to sadness and frustration for me at that point. I smiled when I had to yesterday, and laughed when I thought it was a good time to show people that I am not worried, but I was on total overload yesterday. I think my big, saggy steroid cheeks hung down like the jowls of a huge boxer all day long. I HATE looking at me right now.
After we saw Dr. Neuro, we ran to the Cancer Center to talk to our Oncologist there. She wants to keep me on the same medicine that I am currently on - WHICH WAS AMAZING NEWS and add another drug that usually works better with getting into the brain blood barrier.... that wording seems to come up a lot. There aren't really a lot of drugs that are effective in doing that. She is not sure how well it will work, but we are going to give it a try. They are both pill form, so I will be able to continue to take them at home and I really believe that I will have minimal side effects, not like being on the hard core stuff. I won't loose my hair - well, with the chemo anyways, we know that's coming off with radiation, but my hair will come back on the chemo. And I have already been on the one drug for 3 months now anyways and can function just fine so I have no worries. Well, that is a bit of a fib, this other drug is hard on your heart. It is crazy what all this crap really does to your body. You damage something to keep something else going.
Have to admit, I, probably more so than we, didn't want to talk prognosis or anything even close to that because I will surpass every date and time I will ever be told. I am in NO way trying to be cocky or think I am something special, I just really believe that something great is going to happen. But, there weren't a lot of smiles of "this is going to be ok" "your going to do well" "long term success". You get really good at reading peoples eyes especially when the look sad and don't maintain eye contact with you very long. I just have to go off on my own little path and make up my own blueprint for our families future. I am not going to be a statistic. I am going to be me, for how ever long that is! And honestly, just let the rest melt away. That is hard, I am not going to lie, but I just can't live my life in that head space. I just need to keep planning for my future life with my family and me a part of it.
I was told that I need to stop taking all my supplements for now because no one is sure if any of them are blood thinners and they don't want me bleeding out in surgery. Makes sense, but like I told Ken, it's just really hard to stop doing what I truly believe in and change EVERYTHING it seems for a little while. I asked about still being able to juice and they "thought" that should be fine. Just so crazy! It's healthy for crying out loud. So yesterday was my absolute last binge day and I am going to get this body as ready as it can through celery, broccoli, green drinks, smoothies, soups and anything healthy I can chuck in my gob, to prepare for Monday. I know that isn't a lot of time, but I still feel like a good 5 days will serve me well. And then eating as well as I can post surgery until I can get back home and get full tilt again. I just can't tell you how much I believe in the nutrition aspect of things. You wouldn't be able to tell that from looking at me right now because I have seriously gained 13 pounds... I feel like I am in a blow up fat suit. It comes on so quickly.
But! Dr. M did say that I could lower my Dex dose down to 2 pills a day so that was nice. He was even joking with us when he was showing us the images on the MRI at his desk. He had a pack of digestive cookies beside his computer and he looked over at me and picked them up and moved them and said, "I've seen you people on Dex." I laughed and told him "I didn't want his stale clinic cookies for a crap snack, I want a cinnamon bun the size of my arse covered in 4 inches of frosting." He laughed too!
After our meeting with Dr. T we headed out for lunch with a new friend of ours. Ken has met her from work. She is such a doll. One of those people who you feel like you know forever. I just felt really badly because we had to order early before she got there, and start eating because our next appointment was at the hospital for pre-surgical screening. But we got in a nice quick lunch and visit, we'll see her when we are back this coming week.
We rushed out the restaurant and down to the hospital. Were asked a million questions about previous surgeries and how things had gone. Then we waited to speak with the anesthesiologist who noted my heart mummer so he wanted an EEG? EKG? done. Like he said, there is a little hole there, and I just want to know what is flowing where before we do this so that if something happens after we know what it was like before. Smart enough answer for me! Then I had blood work done in case a transfusion is needed and I have to wear a little pink bracelet for the next 28 days. We were at the hospital from 1-3:30ish. Like I said, no time to stop really for anything at all.
We came out and it was snowing like crazy! Although we were tired, Ken decided that he wanted to get the first leg of the trip out of the way and make it back to Dad and Mom's for the night. So we quickly hit up Costco for all the essential bulk needs and shoved the car full. Seriously, packed. Like no room left at all. But we have enough TP for a few months!!!! That always make me happy, and paper towel, and laundry soap... you know, the wired stuff you don't ever really want to be without?!
We raced back to the hotel, threw all our crap together... well, Ken did. I ate some more, I just crave granny smith apples and almond butter and it makes me happy, plus I knew that if I did that it would help out immensely with the amount of room we would have in the car. Ken made sandwiches for us for supper and Dad for the next few days at work, we hit up Timmy's to bring some muffins home for Dad for breakfasts and then we hit the road.
It snowed like crazy the entire way to Dad and Mom's. Our average speed was 74kms but that was safe and it took us 4 3/4 hours to get here which wasn't so bad considering the road conditions. And it was pretty quite other than some semi's and plows, we were pretty much the only ones on the road. It was a good drive.
We finally had a REAL conversation about our life, complete with yelling, crying, frustration, stress, swearing, unloading, and re-grouping. It was exactly what we needed. It was UGLY!!!!! let me tell you, but such a weight off our chests. I think we have some great ideas of what we would like to do as a family in teaching our children certain things, like helping out and being a little more responsible so that they learn that we really all need to work together right now and Mommy and Daddy just can't do it all. They are old enough anyways, and guess what, back in the day, kids did WAY more than they ever do now. I want my kids to learn the value of working hard, pitching in and helping others and how important it is to serve. And that if we can work together as a family, there will be more time for fun because one person won't feel like they are trying to keep it all done. That was probably a little too personal to share, but I want to be open. And I am just so grateful that Ken finally did open up and get friggin' mad! IT'S about time!
On a more beautifully painted picture - we drifted into a still, snow laden little town I grew up in, huge flakes falling everywhere, it was absolutely beautiful, I can't even tell you how certain images seem to be healing and therapeutic for me. This was one of them. I love this little town in the winter, it is stunning. We came up to Dad and Mom's, unpacked the necessary things, ate, of course, why wouldn't we, we have been on a bender! And came up to bed on full tummies of 7 layer dip, muffins and chips.... ya, they are still sitting in my chest I think... I am excited to wash it down this morning with water maybe?? All day, and then a bag of celery... not sure yet.
It was so nice to actually sleep peacefully, in the home I grew up in. I drifted off, looking out across the street at the glow of the light against the neighbors house, which roof line is caked with thick snow. It made me smile. It made me thankful. It made me cry. Everything makes me cry right now. Ken's still sleeping. I would be but heart burn has set in so I am done. But I am grateful that I had a GOOD 7.5 hours of restful sleep.
Today we are heading the rest of the way home. We have a lot to do to get ready for Monday. Ken needs to get some time in at work and pick up some things. He, which I am so thankful for, is coming over for the surgery as well as the kids and my Mom and Dad. I just want them to be there. When I am awake I just want to look into their eyes and know they are there. I just want to be able to have hugs from those that I love and see them smile at me. I just need them. So we'll probably be there for another week. I will most likely be in the hospital for 4 or 5 days, depending on how well I do, I am hoping for 4. I hate hospitals, especially sharing rooms. And then maybe we'll have one day at the condo before we head back home.
Like I said, then I will have a few weeks off for recovery and then Mom and I will head back over to Kelowna for full brain radiation, and then hopefully from there straight off to Vancouver for the stereotactic (more pin point) radiation to clean up the back and zap those two smaller spots on the right side. Dr. Neuro doesn't think he will be able to get those ones as one is too small and you have to be able to see it on the CT to go after it and it only shows up on the MRI - he MAY be able to get the other one, but if not, those two little spots with just be radiated.
I think I still feel ok about everything. Like I said before, I just feel like it is completely out of my hands and at this point you pretty much just do what people tell you they think is best for you. I have to trust that this is all happening the way that it should. I don't have time or energy right now to research anything else, it's just going to happen the way it is supposed to happen.
So we will be home until Saturday, my Mom and Dad Atwood are going to stay with us for a few days to help us get organized to get ready to go and then we will be heading back out here Saturday, to get to Kelowna by Sunday, so we can be set up and at the hospital by Monday am! I think I have given you most of the details that we have. That was a long post, sorry about that. Again, thank you for your concern for our family and love across the distances. We certainly feel it from everywhere.
I am not sure who will be blogging next. I hope Ken will keep you apprised of the situations as we go through them, I actually hope that I feel great enough to be able to blog about it. Probably not so much on surgery day or the day after, but soon after. Heartfelt gratitude to you all.