There Is Some GREAT News in This Post...

I know, I know, its been a very long time since I have written an update. Things have been happening in warp speed, its hard to keep up! And then when the day is done, and Daniel is tucked into bed, I find myself so tired, that I am not far behind him. But here is the update, with loads of information!

Emotions have been all over the place in the last week or so, some days being great, some bad, and some good and bad. With the highs and lows has come a lot of information. Where to start??

I will start right in with the details of the hospital visit to the orthopedic surgeon, Dr. Armstrong.

Just before we left and headed out the door, there was a knock on our door and Barry's crutches were delivered. The order was put in around 4pm the day before, and before 9:30am the next morning they were here. Pretty great service, if I may say so. These were compliments of John the physio guy.

We dropped Daniel off with Bieke and headed over to the hospital, arriving just before 10am. We checked in and gave all of Barry's details to the nurse and then waited about 10 minutes, maximum before Barry was called to see the doctor. We weren't brought to a room, but to the viewing station in the hallway, so we could see pictures of Barry's scan on the monitors. It was really interesting, but quite startling to see the size of the cancer there. I would guess that its close to the size of a golf ball. That leaves about a fingers width of bone that is not affected by this cancer. This is the dangerous part because it could break at any time. Scary, because fixing a break is much harder, longer, and more painful for Barry than to strengthen the area before a break happens.

Basically, we were unable to make a decision because this orthopedic surgeon didn't know enough about the cancer side of things to make us feel comfortable enough to go ahead. And Guelph had no oncologists on call at all, so we felt iffy about making a choice then and there to go ahead with the operation. We were worried about the chemo only days ago, blood levels, infection, and just making such a quick decision that would have very lasting consequences.

We left the hospital thinking we would speak with the new oncologist in Hamilton that we met yesterday....

So we called Bieke, and asked if she wouldn't mind if we grabbed some breakfast (Barry hadn't had anything to eat in case he had to go ahead with the operation and he was feeling very ill at this point.) So off we went to Town and Country, a dive of a restaurant with great food here in Guelph.

So fast forward to this week and our appointment in Hamilton with Dr. Tozer, the new oncologist. The drive to Hamiton was good, with not a lot of traffic. I was worried the entire trip because we wouldn't be there to pick up Daniel from school. However, my aunt was there to pick him up and he had no worries that Mommy and Daddy weren't there. They had a nice time playing and they made a special pizza, and even when we rolled in very late, he wasn't upset that we had been gone that long. In fact, when I was talking to him tonight about picking him up from school tomorrow, he was upset that I was coming, but has agreed to let me come one day, and Grandma can come the next. We are to take turns, according to Daniel. lol. So thank you, AJ, for taking such great care of Daniel. We couldn't have made this LONG yet important trip without you!! And Friday is your day to pick up Daniel now lol.

So we got to the hospital, I dropped Barry off, parked and brought him a wheelchair. Once he was in, the security guard insisted that he wheel Barry for me, and brought us to the information desk. What I thought was really nice, while we waited for the information lady to be free, was in the waiting room, and in all the other waiting rooms we saw, there was a basket with yarn and knitting needles with a note. I am not sure what the note said, but I believe the yarn and needles were there for people to knit while they way, and then in turn make blankets out of what the patients make. What a lovely idea!! I can knit, and I was there by myself, bored, I could knit, relax, and help someone out at the same time. Brilliant!

So the info lady didn't just tell us where we had to go, but she had a volunteer take us to the correct clinic and she also gave us a pamphlet to familiarize us with the hospital. Great treatment! Until we started our wait for the doctor. We waited about 20 minutes in the waiting room, and then Barry was called. We thought that was great timing, and thought we would be in and out before rush hour traffic started. How wrong we were. We sat and waiting a total of 2 hours for the doctor. He walked in at 5:00 for our 3:00 appointment. After we told him we were not too impressed, we discovered that he is a great guy.

Let me spill the great news I have been sitting on this entire time I have been typing!! The chemotherapy is working on the cancer in Barry's body!!! He had a bump on his arm that was literally the size of a golf ball, near his shoulder. That has reduced in size by three quarters, if not more. There was a smaller bump on his chest, and that is nearly gone. There was a big lump on his back that I can't even find now!!! We told this to Dr. Tozer and he said that this was very rare, and amazing! I don't think he gave a percentage of the probability of this happening, but he said it almost never happens. Go Barry!! What a champ!!!

The only thing that isn't so great about this is that the chemo is only working on his body. The "mets" as the doctors call them, in his brain are not reached by the chemo. There is a blood barrier around the brain that protects the brain from the chemo drugs. So that leaves his fate, for now, with the radiation that he had. Dr. Tozer said that more radiation on the brain could cause dementia and Alzheimer's like symptoms. Not good.

So Dr. Tozer mentioned this other drug, that is almost identical to the chemo drugs that Barry has taken, except it is in a pill form and not taken through I.V. and (here is the good part) it passes through the blood barrier in the brain! The bad news (and its pretty bad) is that it costs $3000.00 to $5000.00 per month and the government (lovely government) does NOT cover it. Apparently there isn't enough supporting evidence that it is better than the chemo drugs. They haven't had enough successes to prove that it can save lives. Dr. Tozer said he will give me a name of a woman in the hospital that can help me try some avenues to get the government to pay for it, but it is not likely. So, my friends and family, I have now made it my mission to get Barry this drug. If he is one of the few (lucky number 7%) that is responding to the chemotherapy, then there is a great chance that he will respond to this new drug.

Dr. Tozer also talked about Barry's femur, the main concern right now for all doctors and us. The doctor is passing along Barry's scans and charts to a orthopedic oncologist, a bone doctor that specializes in cancer issues in the bone. She is basically going to look at everything and determine if this is something that would benefit from her speciality, or if any orthopedic surgeon could handle this. Once she gives it all a once over, they will be in contact and let us know who we should see about it and possibly her opinion of what we should do. So much to think about. The options we have heard so far are to put a ruler like metal thing down the good side of Barry's femur and to screw it into place, and then to radiate the cancer. The problem with this is that the radiation might not work, and if it does, we don't know what would happen with the "pocket" that would be left in the bone. The bone could kind of be like swiss cheese, not strong, filled with holes, and the femur would be weak. Then, it could either regrow, and become healthy, or it could be too damaged and it may not. The other option that has been discussed is to cut the femur above the cancer point, and the remove it, and then replace it with a donor femur. This option is obviously more invasive and would have a longer healing time for Barry. So basically, we aren't experts, and we aren't sure what the best choice would be. All we do know is that this is serious, and none of the doctors want the bone to break before something is done, because fixing the break is the least desirable option with the most pain and healing time for Barry.

Tomorrow we are going to see a new radiologist, Dr. Basiur. Hopefully he will provide us with some insight, and also be a little nicer and not as demeaning as the first radiologist. I sometimes feel I would be much better at this if I had a degree in medicine!

Our emotions are up and down, and Barry is more frustrated than ever that he can't get around on his own. He is scared to break his leg, and is therefore being extra cautious. He uses a walker in the apartment, crutches to and from the car, and now a wheelchair once we reach a destination. There is a bath bench to help in in and out of the tub, and to provide a seat while showering so he doesn't slip and fall. He even has a cane from his dad to get around the kitchen and bathroom a little easier and where the walker doesn't fit. And then he has me to drive him everywhere, and do the majority of what he needs, so his independence has basically been taken away. I know that its starting to get to him, and he is getting angry. He really has no outlet for that, and sometimes it comes my way because there is no one else here to take it. I feel bad for him, and wish I could do more. I just don't see how there are enough hours in a day to get it all done. I want to do so much more for him but I run out of time or stamina. I try my hardest to keep a smile but some times that doesn't happen. Barry is only 50. He was strong and independent and now that has all changed. I just keep reminding myself of how I would feel in his shoes. That seems to get me by for now.

Today I made a favourite treat of our for dinner. Its a chowder and it is delicious! I am going to include the recipe because its great for the fall weather because it warms you right up! Try it and let me know how you like it!!

Sar's Hearty Bacon Potato Chowder

8 slices of bacon cut into 1 inch pieces
2 cups of cubed red potatoes, skin on (I even use regular potatoes and its just as good, just not as much color)
1 cup chopped onion
1 cup sour cream
1 1/4 cup milk
1 can of condensed cream of chicken soup
1 can of whole kernel corn, drained
1/4 teaspoon pepper
1/4 teaspoon thyme leaves

In a big pot, cook bacon over medium heat for 5 minutes. Then add potatoes and onions. Continue cooking, stirring occasionally until potatoes are tender (15-20 minutes). Add remaining ingredients. Continue cooking for another 10-15 minutes to heated all the way through.

I usually add more potato and onion, (an extra half of the suggested amount) and sometimes more corn, which makes it more like a meal. You really can't mess this up. Also, if I have no thyme, I use an Italian mix of spices, or oregano, just a little less if just using oregano.

Its late, I am sleepy, and Daniel has school tomorrow and I've not made his lunch for tomorrow! Speaking of school, Daniel is selling chocolate covered almonds and cashews as a fundraiser for his school. Anyone interested in buying a box (or two) email me. They are $3.00 per box and yummy :)

I hope I have covered most things..... I know there are more, but that can wait until tomorrow.

Lots of love to you all xxx