Another bad week

Hi Everyone - Again thanks for all the calls, emails and I even signed up to facebook so I'm hearing from some of you there! This week was another drag us down week as the swelling started to get really bad in the face area. My regular Doctor called my surgeon, who wanted to admit me to have a gt tube inserted in case it got worse. So far I've have missed out on that fun as the swelling now has moved into my face area and I can still swallow on my own. I have another CT scan today to look at my chest area to see if there is a blockage there that is causing the swelling. They are also going to scan my legs to see if I need any spot radiation there yet. (Spot radiation is very helpful for bone cancer).

We met with a new Dr. on Wed. and he will be our main guy from now on handling all meds, ordering different tests, and coordinating appointments with specialists. The news from the oncologist on Thursday was not good, he said we were denied the herceptin but we are still trying to get it from another angle. Patty and I both want another oncologist because this one was negetive back in September when we first met him. The rest of our doctors keep telling me to stay positive and never give up - this guy is so negative and drags us down. I think a meeting with the top management team at the cancer clinic could be next. More later as I got up at 5am to do this and now I am ready to fall back to bed. Take care Dallas

MORE NEWS FROM THE WAR ZONE

Thanks so much for the emails, phone calls and blog comments. I'm sorry to be using this format to update those of you that have left messages - please understand that right now it's easier for me to type than talk. By Tuesday, Dallas’s face and neck had swollen up a lot more so we went to the ER at Royal Jubilee Hospital and spent 7 hours there (what a gong show). The ER doc had never seen anyone with Dallas's symptoms, so she phoned his surgeon who ordered another CT scan – even though he’d just had one the previous week (there's a reason I call him Glow Boy!) and also a chest x-ray. When the surgeon had time to see Dallas he was stumped too - he actually went out of the room to refer to the CT scan three different times while he was assessing Dallas! The only thing he thought it might be is an infection so Dallas is on some strong antibiotics. We saw the surgeon again this morning and he thinks that the antibiotics are working. I would say that the swelling on Dallas’s face has decreased a bit and he’s having an easier time talking so I think they’re helping too.

Yesterday we saw the oncologist to come up with a new treatment plan which is:

1. We’ve applied again to get herceptin – the chemo drug we wanted in the first place. It’s a long shot that the BC Cancer Agency will approve it but we’re hopeful. If they don’t approve it there are a couple of other avenues to follow, one being that we pay for it ourselves. No matter what happens we’re going to get that stuff soon.

2. They are going to address Dallas’s bone cancer which has spread from his neck to his back, hips, and femur. They’ll give him a bone building drug by I.V. which should keep the bones stronger and alleviate some of the bone pain he’s been experiencing. The drug will also help to prevent fractures which are a high risk with bone cancer.

3. They’re registering Dallas for Palliative Care. This one felt like a knife through my heart but there are reasons for it. If you’re in this program your bone building drugs are paid for. There is also the benefit of being sent to the front of the line if you need to go to the ER for anything. Their goal is to keep Dallas comfortable and ensure that he’s seen by the right physician quickly.

There was a discussion about what kind of medical care Dallas wants to receive. There is no cure for adenocarcinoma so the oncologist wanted to know what Dallas’s treatment goals were. Dallas doesn’t want every type of chemo thrown at him just because there may be a chance it will help – especially since this means he’d feel sick and weak most of the time. He wants to try the herceptin and then be kept as comfortable as he can be for the rest of his life. He still wants to spend lots of time doing things with Marcus and Jordan, he wants to go fishing and have fun with friends and family. He wants to be able to do the things he loves rather than be hooked up to an IV all the time feeling awful. So that’s the plan. Next week we have an appointment with another oncologist whose specialty is pain management and we also have a follow up appointment with our oncologist to see how our application for herceptin is going. The Big Guy is handling all of this very well (much better than me!) and still strongly believes that there’s a cure out there on some horizon so he’s going to keep fighting like hell for as long as he can. More later...

Love, Patty

Our Fight Continues

Hi Everyone
Our news was not great yesterday, although not all hope is lost. We are now off the magic pills. While they did work on the two small tumors that I have, shrinking them somewhat the last check up, this time the tumours stayed the same. The bad news was that the bone scan showed that the pills were not able to stop or reduce the cancer in the bones. The bone scan showed that the cancer has spread slightly into my hips and femor bones. Our Dr. feels now is the time for one last chance using another combination of drugs including more chemo and Herceptin (the drug we wanted in the first place). To get herceptin approved for me will be the challenge. Even though this drug has been successfully used for my type of cancer in other parts of the world, I don't fit into the BC Cancer Agency's guidelines (in B.C. it is available to breast cancer patients). We are hoping that they will make an exceptional ruling or we will travel elsewhere to get this treatment. Patty and I are very positive that something will work as I still feel very good most days. Yesterday was extra tough on Patty as she also caught her finger in the car door and had to go to the hospital for stiches and x-rays. Patty will update you more later if she is able to type. Again thanks for all the calls, emails, visits and prayers. Please keep them coming. Dallas

Life on the Coast

So tonight we decided to enjoy another evening dinner on the Cinnamon Girl and of course my boys always try to feed the eagles. Here is a great picture of an eagle opening its talons to catch the fish that Dallas had offered it. A great time was had by all and dinner (even just smokies on a bun!) always taste gourmet when bbq'd on the boat.

Thanks for all of your calls and emails and visits. We're getting closer to our nerve wracking time. Dallas has two scans next Thursday (one bone scan and one CT scan) and then we'll be back to visit the Oncologist for reports a few days later. We can't help but think that the magic will continue! More later....
Love, Patty & Dallas

HI FROM THE COAST!!!

Hi everyone...thanks as always for staying in touch. Time continues to fly by in the Stober household! This past weekend we had a great time with Dallas's high school buddy, Robin Richards, who was visiting from Lloydminster. Dallas, Robin and our buddy Steve enjoyed reminiscing about old times and managed to get out on the water a few times.

Tomorrow it will be one year since the dreaded "C" word entered our lives (why do I even keep track of that stuff?). I am happy to report that Dallas continues to get up every day and fight the good fight. He's had more than a few rough patches to contend with this year but I know he's winning. Thanks for all the support - we love you guys. More later...

Patty xxoo

PS - Next big checkup is in July - bring on more magic!

Some Good News

Well after a very stressful week our Doctor in Vancouver gave us some very good news. The CT scan showed that the two tumors I have are shrinking after 2 months on the magic pills. There is still some caution needed though, as I also have cancer in some parts of my neck and back bones. The Doc said it's very hard to tell what's happening there because the CT scan doesn't really show a true picture of that area. All Dr's are very consevative but he was very positive and we will be continuing on with the magic pills for the next 8 weeks then more tests. Thanks for your prayers, call and emails. A very happy Stober family tonight. Dallas

Back to Vancouver

Hi everyone Today is the day we are back to Vancouver for a CT scan then see the Dr on Tuesday next week to go over the results. This is the most nerve wracking part of the whole process. He will decide if the magic pills have worked and continue on with them or what the next treatment will be. Fishing has been terrible lately but its still better than having to wait to see the Dr. I better wake Patty up and tell her we have a ferry to catch . Thanks for all the emails and calls. Dallas