Oct 10, 2010

U-C-L-A, goooo Team Rachel!

Last week marks a positive and final stage in my diagnosis.
What a wild ride this has been Mr. Toad!
Since my surgery, I have been seeking multiple opinions to confirm what my treatment regimin will be. I have found that you cannot just take your doctors word for it, even if you trust them, shall I say, with your life. Because, in the end, they are truely "practicing" medicine, and it IS your life. You have to be your own advocate and ultimately, you have to decide what you want to move forward with. No part of that is easy, since I don't have a doctorate, I mean, let's be honest, I went to fashion school for a reason ;)... I thought that picking out the best hospital gown would be the extent of my decisions regarding my care, but on the contrary! Because I am in a situation that is rare, it has been up to me to research, locate, and confirm my treatment. My life is truely been put into God's hands.

Let me review and show you just how amazingly God can orchestrate your life, if you let Him:
MRI- late July, discovered 2nd mass in uterus
*this alarmed me a little since it was the first time we saw the idea of cancer from the radiologist report.
Biopsy-late July, 1st result= begnin rare tumor, 2nd result (minutes before surgery) rare cancer
*first a sigh of relief, then fear. I had signed away all rights to my body for this surgery, so I "knew" I would be having a full historectomy. I went into surgery in tears, since after having Miss V, we wanted to be able to have more blessings like her!
Surgery- August 11th, tumor removed. uterine tumor MIA. complete abdomen review by hand
*coming out of surgery, while still groggy, I could feel the vertical incision from pubic bone to belly button, and "knew" that the histo was reality. But, God stikes again, and since the tumor was gone they kept everything in tact. I only found that out later once I was in recovery ward. The nurse came over and told me she was going to give me a "stong margarita" I asked for a dirty martini with extra olives ;)
Post-op Consult with Oncologist (private practice)- This doc prescribed chemo for 4-6 months (2 drugs) then radiation.
*since this Dr. told me that he only see's this diagnosis 2-3 times a year, I was adiment that we needed a 2nd opinion.
2nd Opinion at UCSD- this doc prescribed chemo for 3 months (1 drug) then radiation.
*While I liked this doctor and the facility, God placed in it my heart, and I still was not satisfied.

We then continued to research, what did we do before the internet??!? And found that there were multiple hospitals in LA area that had specialty clinics for Sarcomas.
I selected UCLA, because it felt comfortable to me, and less "hospitaly" than the others...since I have never felt sick at all in this journey, I wanted a place that did not make me feel "sick" by going there.
I had selected 2 doctors that I thought could work out, and called my insurance to get the approval. God works again- only one of the doctors was in the system, so by "default" he was selected.
3rd Opinion- UCLA Medical oncologist- agreed with UCSD 2nd opinion treatment schedule, but also offered suggestion of Chemo using 2 totally different drugs.
*We had a lot of trouble getting in to see him once we arrived due to insurance issues, but God again worked it out on site. This oncologist referred us to see Dr. Eilber, as he was concerned with the results of one of my scans and felt I might need more surgery. This sent us into another week of worry, as we thought previously that everything was clear and we were moving into treatment stage. Now we were back to square one! Or so we thought.
The following day, we drove again to ULCA to see Dr. Eilber.
4th Opinion- UCLA Surgical Oncologist Dr. Eilber- couldn't see him due to mis-comm on insurance.
*So we drove 3 hours to sit in the waiting room and be told we could not see the doctor until we forked out $1200. WHAT? That is when I knew that HE was the doctor we needed to see. There was so much resistance from the world, this had to be right! So we kept on...
Because of our rare story, the doctor came out to the waiting room to be briefed on our story.
He was visibly upset, partially on the counsel I had been giving to date, and partially that it took me so long to route to him. He asked me to get some more documents and come back the following week once insurance had approved my visit.
Then my husband got strep throat. OF COURSE! However, it was a blessing since my mother in law was able to attend the next appt. with me, and she was invaluable in being my advocate.
4th Opinion, 2nd trip- UCLA Surgical Oncologist Dr. Eilber- He was even more upset than the first meeting. He only works on sarcoma cancers, and sees over 1300 patients a year, operating on over 600 personally. He would have preferred to test the radiation and chemo on my tumor prior to removal, as that is what his research has proven best. However, we did not have that option, so we will be working in the dark. (or so he thinks! we know that we are guided by the light) He recommended radiation for 5 weeks, 5 days a week, and then chemo.
*confident in his expertise, we have decided to follow his direction, but will be treated locally with his recommendations and consultation with the local doctor.
So, you can see why it has been a long, strange trip! To see and feel God's hand and involvement though the entire process has been amazing!

We are now packing up our house with the intent to move in with Trevor's parents by the end of this month. We hope that this will bring some much needed peace to our daily life, relief, and since the sitter lives right next door, Vida will not have to commute everyday! This in itself is a blessing to me, as I found this becoming a huge area of stress for me.

I will be returning to work on the 18th, and believe that radiation will begin the same day. I believe that God is allowing me to prepare my body and soul for chemo by giving me a few more months. I have been on a strict regimine of supplements specific for cancer, as well as a no-sugar, low wheat/dairy/sodium diet (no fun, but lots of interesting veggies). All of this will allow my cellular body to become as strong as possible.

While this whole process has taken over 2 months, and sometimes I have felt that I was putting off the inevitable, I have to remind myself that Gods timing is not our timing. As long as you are following His lead, you will get there in time.
Thanks to everyone who has continued to pray us through this! We could not do it without you!!
Blessing on all of you in return ;)


Ken said...

Ra Ra. Words cannot describe my reaction to your post of 10/10/11

I'm so excited, thrilled and bursting with joy from deep inside my heart. Your response to this crisis in your life - and your ability to see God's hand in it all - are like a gift more valuable than gold to your mom and me.

I think I'm beginning to understand how God feels when a person decides to allow him to be their Abba father. (their loving daddy). The journey you and Trevor are on is taking you guys to a place where few people travel. Many people claim to have FAITH. But faith by itself in only a positive attitude. You are learning to 'walk with God' - day by day trusting that he will orchestrate the circumstances in your life that are Best for you. That's real faith.

I have never, in your 33 years, been so proud of you... not necessarily because of your actions, but because of your heart and attitude... who you ARE.

I know things will work out for you, Trevor, and precious little Vida LaRue. Amen.

Love 'ya, Ra Ra.

Anonymous said...

I love you soo much and so does God. he will prevail and see you through this..His plans are far better than ours. I have to remind myslef of this everyday.
Thank yo for sharing Ra Ra. Please know I am here for you, and feel bad I haven't been there for you lately. I do apologize! You are in my prayers daily. xo~Gwennie

Tamar said...

You are my hero, Rachel. We can say we trust God or have faith, but when faced with challenges like you are facing, the facade of faith and religion comes crashing down or it becomes real and you truly have an anchor for your soul. You have an anchor for your soul through all the storms you are in. Please write a book!

the pattern

Just as soon as you think nothing will ever be the same again...you fall back into life's steady pace. L I F E  R E M E M B E R S  T ...