Thursday, December 23, 2010

A New Course

Hello Everyone,
Well, Jay and I went to see Dr. Bhushan yesterday and spoke with him for 2 hours. As most of you know, mine is a RARE case and there has been many factors that have come into question about my treatment. This is what we have decided to do....

Dr. Bhushan still would like to see me start treatment however, he agrees that there are many things we just don't know about my case and will not be able to know so, given that, he feels that I am an intelligent person who is taking my unique situation very seriously and agrees that it might be an option to simply monitor my condition and see how this plays out. He has only experienced 1 case similar to mine and they went forward with treatment but that person did not do as well as expected so he is willing to try another route with me. He is going to talk with Dr. Rao, my hemotologist/oncologist in McKinney and assured me that she would be fine since I have spoken with him. They are very worried that if something happens to me, their biggest concern is fractures, that they will be liable but since I am very aware of these cautions, he agrees that I might be able to go several months, years without this intervention and we will monitor on a monthly basis. We will also do bone marrow biopsies and PET scans on a 3 month basis to watch for progressions in the cancer.

In the meantime, I am planning to go back to Arizona in January and retain my job as an educational consultant through May, God willing. This will help us a great deal financially and that is also important.

I will be back in Texas for good in May and if and when things begin to progress with the cancer, will begin treatment. The only treatment I have had is a bone drug called Zometa which could explain the drop in proteins etc. but regardless, we still have not found actual cancer in my bone marrow so I would like this time to let God, and the changes from God in me, do it's work. Miracles happen and although I am not worth of that intervention in my own thoughts, I know that God does everything for a purpose and the impact this has had on all of us has been a blessing from God.

I will continue to pray as I'm sure all of you will, that we all keep God in front of us as we live each day and that we appreciate and share the gifts he has given to us. This journey has been spectacular and as I move forward with my life, I have a newfound appreciation for literally EVERYTHING around me and EVERYONE I meet. The miracles of God has already been experience by me regardless of whether or not my cancer progresses. I am loved and blessed to have had this life and all of you! May you all have the most wonderful holiday with family and friends and I will continue to write and let you know how I am doing.

Love to all, and Merry Christmas! Susan and Jay

Friday, December 17, 2010

A fabulous reply from a fabulous friend that I wanted to share with all of you!

Marilu is a good friend of mine who still deals with cancer issues and has for years. She responded to my message today and I wanted to share it with all of you. We have so much knowledge, all of us, and it is such a gift to share these words with others. Love, Susan

For those of us that have walked this path before you, your words serve as an affirmation of what we have experienced and what we have felt. I have always told friends that having cancer was one of the best things that ever happened to me and they look at me like I am crazy. It's funny how you can be getting thru life and what you think are it's ups and downs when God comes in and shakes it all upside down! But just like the inside of a snow globe, things eventually settle and you are able to marvel about the scene that is right in front of you. How blessed we are to have that chance. And for those who have not had to go thru the cancer experience, learn from others and embrace the life that you have...the good, the bad....and yes the ugly! It's all GOOD! Have a blessed holiday Susie and know that you are in all of our hearts and in our prayers daily! 2011 will be miraculous! I can feel it! Love, Marilu

Faith Makes Things Possible, Not Easy

Hello Everyone,
As we near the holidays, and the birth of Christ, I am reminded of each of you and the Love I feel for all of you who have given your time to pray for me. I continue to feel well as Jay and I head to San Antonio to see his parents and 2 of his brothers and their families. We will also stop in Austin on our way home Sunday to see his son Marc and Stanzie, they are expecting our first grandchild!

A good friend, Sis, brought me a gift which had the above quote written on the frame. What a beautiful statement! Her daughter, Shea, was involved in a car accident many years ago but continues to struggle with health issues, blood clots right now. She is so young and beautiful and this constant stress is taking a toll on her and her wonderful family. As I leave today, I am asking that all of you shift your focus on her for prayer as she so deserves the healing.

I have been so blessed and feel the power of your prayers each day as I just know that God is hearing, and answering them per his plan. I can't begin to tell all of you how wonderfully blessed I feel for having been diagnosed and yet given this challenge to be patient as I listen and follow his direction for my life. I am forever changed and yet feel nothing but peace at what will come. It is truely a GIFT to let go and follow, which has never been my strong suit!

Please be safe over the holidays, keep the things that are truely important in the forefront of your lives and let the people you love know how important they are to you! Forgive those who hurt or offend you and be compassionate to those who do not feel the blessings we have. Remember that even in our darkest hour, there are many more who are feeling greater pain, anxiety, saddness or depression and we can be the source to lift their load, even for a brief moment. Smile and breathe in the sunshine and air showing God how greatful you are for each and every day that we are given.

My Mom will be here next week to spend Christmas with us and my sister will arrive from California the following week. We plan to spend New Years with one of my brothers in Oklahoma, God willing! To all of those who are graduating this weekend, Tricia and Max especially, may God bless you and find you much happiness in life!

Happy Holidays! Love to all. Susan

Saturday, December 11, 2010

Neglecting the Blog but I'm back!

The past couple of weeks have been confusing to say the least but there is such a large part of me that believes I am healing and all of that is coming from prayer and God. Each day, and often throughout the day, I find myself in conversations with God or others who profess God's word. The power of God is truely awesome and I have learned over these past 2 months to listen intently to his guidance, which has not been easily swallowed by my family or friends at times although most are on board at this point in time.

How can we explain the improvements in my health??? The state of peace that I have felt over these past 2 months has grown into a lifetime of change and everything in my life is now re-focused and literally left to God for direction. It has been an easy thing to let go and I am only sorry that I didn't do so a long, long time ago! This change has not just taken on my health but also my emotional wellness. Here is an example....

My daughter, Jenna, last Friday, called us at around 8:30 as Jay and I were relaxing watching an old movie, "Kramer vs. Kramer". She was crying as she had been involved in a major car accident on Hwy 75. She was OK, a hurt leg, arm and neck but luckily no life threatening injuries, praise God as that might have done me in! Someone had plowed into the back of her stopped vehicle going about 40mph which pushed her car into the stopped vehicle in front of her and that car into the one in front of them. Under normal conditions I would have been in a panic!!!! I was calm as we drove and prayed for her and the others, thanking God for his goodness in keeping them safe. 3 months ago, this would not have been the case.

Jay and I woke this morning and had a wonderful discussion about God and our purpose on Earth. It amazes me how much he knows about scripture and I have learned a great deal from him. Each day, as I seek to learn more about God, I am held to a higher standing of how to live my own life. It has been exciting to be with a man who was brought up with so much Christian knowledge and as he shares this with me to better understand God. Through this we find ourselves both growing in love for each other and feeling a sense of awesome power as God purposely brought us together.

We talk of the need to live by example and both have a hightened awareness of the need to raise the bar as you learn more about God's love and the power behind that. It is quite a responsibility to have this knowledge but I open myself completely at this point to learn more about how to live my life through his grace. I am so happy and so filled with peace and love that it radiates from my body which seems to be pushing the cancer out! There is no room for this illness as God has filled me with LOVE. Once again, I am grateful to all of you who have shown me, unconditionally how loved I am! You are obviously filled with God and have helped to make my cup runneth over! I love you all! Continue to pray it forward! Love, Susan

Thursday, December 9, 2010

Update but still not doing Chemo

OK everyone,
I know that I am making everyone crazy but I just can't go forward yet once again. I'm not sure why this is happening but I know that the facts are just not justifying the treatment at this point in time.
Today, Jay took me for my first chemo treatment which as most of you know has been a difficult decision for me to make but I was on board and ready to go forward. Last week, I had a long talk with Dr. Rao, my oncologist in McKinney with Texas Oncology, and we discussed my concerns with treatment when there was no evidence of cancer in all 7 of the bone marrow biopsies that had been done to date. She understood but assured me that the elevated protein and 92 bone lesions made it important for us to get started soon. I asked her if we could monitor but she didn't think that was a good idea but agreed to do another full blood test to look at my protein levels again.
When Jay and I went in today, she let me know that the protein levels I had in late Oct. 2800 which normal is 70 - 400 was now down to 600! She was also confused. We discussed at length and although she said that I had 2 bone treatments, it still did not explain the lowered protein level. She had called Dr. Bushan at Medical City and although they are almost in the normal range now, he still felt we needed to go forward with treatment.
I'm sorry, but this news further complicated my state of mind and once again, we have delayed treatment to discuss further. I will be meeting with Dr. Bushan at Medical City to discuss why or what could be making these proteins drop.
There are 4 indicators of this disease:
Cancer present in Bone Marrow: I have none after 7 biopsies
Elevated Protein levels: Originally mine was 2800, now 600 with normal range being 70-400
24 Hour Urine Proteins: I have no after 2 tests
Bone Lesions: I DO have these which is of serious concern but how long have I had them and how fast are they developing????
With a disease that is based on longevity and time, considered to be terminal at this point, the key is when to begin treatment, what treatment to do, and what time will it give me...

I have been very involved in prayer and know that you all are praying as well so I am looking to God for guidance and it seems that all of his messages as this point are moving me to a cautious state. I continue to pray and hope you will stay with me. I feel sad that I am going back and forth and making everyone crazy but this is so complicated and I just need to make a GOOD decision.

This morning, Shelly and Donis arrived with bagels, coffee and even little gifts for my first day of Chemo. I have the entire month of December already put together by Brenda with meals and drivers for my chemo treatments. EVERYONE has been so incredibly wonderful and it now feels like I am taking advantage of your kind hearts which is also hard for me but everything you have done has allowed me to solely focus on my health and for that I thank you!!! I love you all! Susan