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.

Monday, September 30, 2013

Video Tribute

Thank you Lanette for working to setup this Video!

I have said it before, and it will not be the last time, I have the BEST neighbors, friends and family!!

I love you!

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.

Thursday, September 19, 2013

Motivation! Why do I do what I do?

I have had a few people mention to me that I do more than they would if they had what I have. Well I have 3 very good reasons do do things. They are my Daughters!
My Princesses

I was talking to a friend of mine about how my spirits are lately. I had to admit that they are not always high, but that because of my cute girls I try to at least keep the appearance that they are. Now I will never claim that they have not seen me cry. That is not realistic. However because of them I will do things that I don't always feel up to. This past summer I have gone with the family and friends to several places that I may not have physically been up to. We have a family tradition to make sure we get to the Zoo, This is the Place Park and the Aviary. These along with family and work parties, me and my cane did them all. And of course we also made the walk for Komen, even if we did cheat a little and cut some corners. On more than one occasion I had to be physically lifted from the ground since I had no strength to do it myself. But, I want my girls to have a "normal" childhood. I don't want to kill traditions that they love just because it may cause me temporary discomfort. I love to see the looks on their faces when we go places and do things. I just can't bear to tell them no, just because I have Cancer. 

Katelynn- Age 7

Because of Katelynn I work on Art Projects. I set up Lemonade Stands. I Read with her and I Love to pick her up from school so I can learn about her day and what she is learning and what games she played at Recess. She is my helper and she is always the first one to organize a project  for her and her sisters and friends. She will also  make sure that I have a fresh bottle of water to drink and to scratch my back whenever I need it, even without me asking!

Emma- Age 5

Because of Emma I play pretend. I play games, anything from My Little Pony to Candy Land or card games. She loves to play and she is so creative that she is always coming up with new rules that make the games even more fun. She is my Snuggle Bug! When she gets home from school, once she has had either a snack or lunch, we always have to spend the next 30 minutes just siting with each other and snuggling while we talk about her day. If we ever have a day this doesn't happen we have to somehow fit in our snuggle time in at dinner time or before bed. She has a million questions bouncing around in her head and I am constantly checking Google to make sure I am giving her the right answer. She is also my inventor, so when she gets an idea about how to make something I have to run around the house looking for all of the supplies that she needs. 
Dani- Age 3

Because of Dani I Laugh! Dani is my Entertainer. I can not count how many times each day that I have to be her audience to watch her latest Dance Creation or another Show that she has come up with. My day is not complete until I have had these performances. Because of Dani, I walk to the park because she wants to play. She is also my daily reminder that I am loved. She will randomly come up to me, put her hands on my cheeks and look right in my face and say, "Mom, I Love you!" And how can you not do whatever she wants you to after that? I don't think it is possible!

Tuesday, September 17, 2013

Healing Wounds for Sensitive and Difficult Skin

For those of you who have been following me for any amount of time you know that there have been PLENTY of setbacks with the healing from my Reconstruction efforts. Well I believe I have found the process that may have just put an end to all of my struggles. It has been about 2 1/2 years of continuous stitches, bandages and skin issues. As of today my reconstruction site is healed over with my own fresh skin! No Stitches! No Scabs! No Bleeding! No Draining! This is definitely something that I am extremely grateful for at this point! Now the miracle of it all... It was healed within 18 days! How did I do it??? I will tell you! :) It wasn't simple, but it WAS simple... Here is the Process I followed:
I found that if I used the same cleaning method every day that my skin would be irritated by the cleaning solution that was being used, so I alternated my cleaning solution to keep that from happening in this time.While it was still fresh and sore I would spray the area with Bactine. This not only gave an initial cleaning but it also had a numbing agent in it so that the rest of the process didn't hurt. Next I would alternate days using either Hydrogen Peroxide and Rubbing Alcohol. Once cleaned with that harsh cleaner I would clean it with a mixture of Betadine and ASEA (Cell repair in a Sodium Chloride solution) after letting this sit for a little while I would rinse it off with plain water then allow it to dry. Once dry I would apply 1 drop of Purify Blend by doTerra, and then allow it to dry again.
On a small Gauze pad I would put 2-3 drops of each Lavender and Melaleuca oils as well as 4-6 drops of Fractionated Coconut Oil and rub all over the effected area. I realize that it does take more oil to use it on the gauze, since it soaks in, but I feel that there is less chance of germ transfer from your fingers or hand, and because of the quantity of oil I don't have to worry about it spilling out of my hand or whatever container I would mix it in. Once this is applied I allow it to dry for a while then I would apply 1 drop of Helichrysum with a Q-tip, I would allow this to dry then apply 1 drop of Frankincense with the other side of the Q-tip. Again I am sure a finger may be fine, but I am a little OCD with things like this.
Once everything is applied I would also apply an ointment to the area to keep it moisturized. I would alternate this as well. The Ointments that I used were Aquaphor, Tripple Antibiotic and a Bacitracin Zinc. I would apply a small amount of the ointment with one side of the Q-tip and then remove any excess ointment with the other site of the Q-tip. If it is too moist then it can Harbor germs and then you end up with infections, But if it is not poist enough then it can cause brittle skin that won't heal.
The area needs to be able to stay clean and yet be able to breathe a little as well. I Love to use a Non-Stick pad first. I have tried most every brand out there and my favorites are actually the Generics. Specifically The Kroger Brand for the Smaller wounds and the Target (up & up) Brand for the larger bandage. They wick away the excess moisture from the wound and won't snag on your wound. When it is bleeding, or draining a lot I use an attitional Gauze pad (any one will do here) to keep it from getting on my clothes.
There are TWO types of adhesives that I can use with my skin. The first is Paper tape. When I am using it as often as I am I use very little so that it doesn't cause additional irritation to my skin. The second is Tegaderm. This is the Transparent dressing that the hospitals use to cover your IV when you are in the hospital. The only place I have found that carries it is Walgreens. This is great for keeping moisture in AND out of the bandage.
I am Healed! Here is a Before, During and After pic as proof.:)
Day 1

Day 9

Day 18