Welcome! Read Me!

This blog is created to give you a central location to answer any questions you have about my current and upcoming treatments and reactions. It is also created to help me make Lemonade out of the Lemons I have been given, so I will keep this as positive as I can.







Saturday, September 28, 2013

Follow the Yellow Brick Road...

So I guess the Million Dollar Question is... What is going on and Where do we go from here? (I feel like we have been here before)

A few weeks ago I started having more serious pains in my right arm and shoulder. It got to a point that it would be increasingly more painful to even push a computer mouse, so I decided I needed to get it checked out. I went in and there weren't a lot of other symptoms other than my pain, so my doc sent me to get an x-ray to make sure I didn't break it, I didn't. So then I was sent in for a PET scan to see if there was a tumor. This time I went up to the Main Huntsman Hospital to get the scan. It was definitely different. Not only did I have the Radioactive sugar going through my Port, but I also drank the radioactive "smoothie" (more like a huge bottle of Milk Of Magnesia blended with fruit flavored Tums) So I was placed in a dark room and told to relax as I was interrupted every 20 minutes to remind me to drink another little bit of the "refreshing" beverage. Apparently the one though my Port shows tumors in the bones, and muscles, and the Drink shows the ones in organs if any.

Once I completed the scan and headed home, I called to see if I could get a copy of the CD so I could continue to have the complete set of my scans. Well, I was pleasantly surprised because when I left I was under the impression that once I ordered it that I would have to once again drive clear back uptown to get it once it was done loading, or wait for that and then for them to put it in the mail for it to be delivered to  me. I was very happy when they let me know I could pick it up at the Radiology department in the office next to my Oncologist, 15 minutes away. That was definitely a relief. I had the CD by the following day which was good and bad I suppose. When I looked at it (again, I am NOT trained in reading these things by any means) I noticed that my shoulder area seemed to glow like the other known tumors that I have. So I pretty much decided that is what it was.I don't know about you but when I am left to my own devices I can dream up a lot of Best and Worst Case Scenarios. And, unfortunately, I ended up with nearly a week to do so before I met with the Doc again. This is not a very good thing except I had really started preparing myself for the worst.

That week came and went and it was now time for the visit with my Doc. When the order was sent for the PET scan, She requested that they specifically compare my prior scan from July to this new one so that we could see if anything was getting smaller or not. The person who read the scan apparently missed that particular note and only gave results of the new one and did not review the prior one. This was still enough information that we could get some results, just not 100% of them. Those results were essentially what I had assumed. Yes, the pain in my shoulder is caused by new tumors. I have one in my arm bone connecting to the shoulder as well as one in my shoulder and the one that I have had in my shoulder blade since the beginning is starting to do damage to the bone. Unfortunately, they also found that I still have the tumor in my right Femur, but also now in the Right Hip, Tail Bone and my Left hip. The only one of these currently causing any bone damage is the one in my shoulder blade. This is good news because this is not a Weight Bearing bone so unless I fall flat on my back I should be fine once we get it under some control. Since I do have these additional tumors though she has restricted my weight bearing activities. I should not be picking up things that are more that 20 lbs with my right arm, and I need to "take it easy" so as to not risk any falls that could cause any issues with my hips.

We wanted to find out why it was doing what it was doing. I was on the Hormone inhibitor that should have kept my body from feeding the cancer and causing it to grow. So I had a blood test drawn to see where those levels are. They are low as they should be on the inhibitor. so in other words, it is no longer relying on the estrogen to feed it for it to grow. There is something else feeding it. (we don't know what at this point) So... The inhibitor is not going to work for me. At least for now.

That being said it is back to my favorite Chemo! Whoo Hoo! I started it today. I am only taking the Xeloda Pill in the same dose as I was originally. This is a great plan, if it works, especially since I don't have to spend an hour in the Infusion chair, I can do it all at home. I am being monitored closely to see how it is reacting so that the doc can "tweek" the dosage as needed to ensure that we have the right process. The bright side here is that while last time when I was taking this at least I wasn't getting large amounts of re-occurrence, it was at least slowing the growth. So it should allow us to have a better chance of getting it to a manageable point. For now I simply have to work with a pain management processes until it shrinks to a point that it is no longer pressing against my nerves so much, which is essentially what I understand the pain to be coming from. We will go into Radiation if at any time any of my weight bearing bones start to appear compromised.

The "Glowing" ares (except my brain) are the areas of concern. 

At this last appointment I also asked the question that I never really wanted to ask, but because of the growth I wanted to be up-front with what I should be expecting. My Doc calls it the "Elephant in the Room" question... I asked her for a more official Prognosis as to the timeline I should be looking at. She avoided it for a good 5-10 minutes reviewing things in my chart and reviewing the plan that we had discussed, and finally qualified the answer she was going to give me with where the stats come from, as in mostly women over 70 with additional health issues and contributing factors. So my time could likely be higher than the averages that are gained from this group. but the timeline she gave was approximately 2 years. This is a somewhat common timeline that  I had seen online and through others experience.With this information she also stated that there are at least 6 additional treatments on the table that we can use, so there are more options to hold off the disease. If we can get it to go into remission then that time will have a likelihood to go up and add years to my life. So, we do have some additional hope. We are not at the end of our options yet, and who knows what new options that we will have within the upcoming years with new treatments and such.

I had told my dear friend Kami about my scan and what I thought it could be when I had gotten my CD back, and being who she is, she went to work. She started things in motion because she wanted to make sure that I would be taken care of if/when I had to be on Chemo again and missing work and pay. With this there has been an ever increasing, and an un-fathoming, outpouring of generosity that I could have never imagined. Additional neighbors and friends jumped in quickly and increased the goal to not only include some financial stability, but to also include the goal to send me and my little family on a wonderful trip to Disneyland. The timing is great as we were intending to try to get there in the next year as well. The girls are finally getting close to the height requirements for many of the rides. Dani still has an inch or two to go for some of them, but Emma and Katelynn are right about there if they are wearing the right shoes. ;) Now things are in motion so we just have to find a time that is going to work. We want to bring Grandparents so they can be included in the joy! With all of this we need to make sure that we can find a time that works for everyone.

Now that I am officially off work on Short Term Disability for the next 6 months I can continue on my quest to keep my kiddos as my central priority This begins with an extreme BANG this weekend. My Sweet neighbor and friend Nancy arranged for us to have tickets to go to the Circus tomorrow. The girls are so excited! They all told me tonight that they were so excited that they weren't sure if they could calm down enough to get to sleep. Thankfully, they did finally crash so I don't have to take sleep deprived children to the Circus tomorrow. :) And now that they are off track we will be spending a great deal of time at the Jump and Bounce. This is something they were excited about but will definitely PALE in comparison to the Circus!

Tomorrow is also a Yard Sale to help increase the fund and help us to continue to make ends meet and care for our wonderful girls. I could not have asked for more. And I am astonished and overwhelmed every day because of the wonderful generosity of those who surround me. "Thank You" just doesn't even seem to come close to the Gratitude that My Family and I have for all who have contributed to the cause in any possible way. I know that Every Prayer that goes up on our behalf is helping me stay emotionally together at least some of the time. I am still consistently increasing the Lemonade at our house for the girls. We are not currently telling them of any time line. They don't need the stress of that worry at this point, but we are preparing them in our way by helping them understand the process and where we go from here and the promise that we as a family will be together FOREVER! There is Nothing that will ever change this! And I want my girls to know this beyond a shadow of any doubt so that it will help them cope with the end result no matter how long I have with them. I do not want them to have ANY question that I love them and will never stop.

My Upcoming Lemonade will definitely include a Photo Diary of the Wonderful memories that we are going to be making. in the Months and hopefully MANY Years to come.

3 comments:

  1. You are amazing. I need to come to your house and drop some things off for your girls. Thank you for making me take a step back and remember my priorities. You are always in my prayers!

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  3. I am so sorry that you're going through this, especially as a mom to young children. You are in my prayers today.

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