GREAT news... Going to San Francisco!

GOOD Morning and Happy Wednesday!

I know you are all praying for me.  I know this because I can see God working in my life already.  Last night, we got some GREAT news!

Nate is friends with an Oncology Surgeon from his hometown, We will refer to him as Dr. F.  When Nate was younger, Dr. F sponsored Nate when he played ice hockey for a traveling team.  I have not met him before but, I've heard he is a nice man.  Nate reached out to him to explain my situation and get some advice.  Dr. F said that my diagnosis seemed 'suspicious' and he would like me to get the very best care.  Dr. F is a very good friend to an Oncology Surgeon at UCSF.  He said that this Surgeon is the BEST in the NATION and that he specializes in soft tissue sarcomas!  Dr. F told Nate that he would give him a call to see if this new surgeon would take my case.  Within an hour or so, we were contacted by Dr. F to tell us that this new surgeon was going to take my case and that his nurse would be in touch with us shortly to get us right in.

This is EXCELLENT news!

Nurse Carol called us back and my appointment is scheduled for tomorrow at 12:15 at UCSF.

Not only is he the best in the nation for my particular cancer, but he is in the UC system.  I have been told that the UC system is great to be apart of because they do so much teaching.  I will been seen by a TEAM of Doctors around the clock who will have access to the latest research and technology!  A Team of Doctors will be better than just one!

AND we just found out that the UCSF Oncology department is 'In Network' and WILL be covered by our Insurance!!!!!!!

To the amazing Dr F:  You know who you are.  I've heard that you are reading my blog.  I want you to know that Nate and I are forever grateful to you.  I know I am not alone when I say, from the bottom of my heart; Thank You!

Please continue to pray for my health.  Pray that God continues to guide me to the best care for my leg.  Pray that the new surgeon is familiar with this rare cancer and pray that I will get scheduled for surgery quickly.  Pray that the cancer gets entirely removed and that the surgeon encounters no surprises.  Pray that our trip to San Francisco is safe.  And Pray for my husband, it looks as though he might be getting sick with a cold.

Love you all!

Oncology consultation with Surgeon, Dr. Lee

Yes, I had my consultation with my surgeon today... BUT, before I go into the appointment details, I wanted to THANK each and everyone of you for your support!  In the last day or so I have received over 240 text messages, AND over 1300 clicks onto my blog today alone.  I have had the fortune to hear, read, and feel support from people I've known my whole life, to people I have never met... I am speechless!

Today, My Mom picked me up at around 8am this morning.  The plan was to leave right away for Starbucks and then drive downtown to the Oncology center.  However, today my Mom decided to surprise me with a gold heart necklace from Tiffany's - representing strength, hope, and love. She has worn it for a long time now and it has always been my favorite of hers.  I loved it when we were in my appointment today that I was able to reach up on my neck and hold the heart and know that everything would be ok.  Isn't it beautiful?

We got to the appointment right on time thanks to free valet up front!  The valet attendant looked at us funny when we told him I was the one with the appointment.  We made it to the office and filled out the paperwork quickly.  A woman from the back room came up to the front, paused and stared at me, then told me that I looked familiar... She said, "Do you work for State Farm?  Because I think you stayed late for me one night so that I could sign the paperwork on my totaled car so that I could go buy a car over the weekend?"  Yes!  That was me!  I told her that I have my own office now and asked if she was still with the company because I know she is getting great service!  What a small world... because I knew her, I instantly felt as though I was in good hands.

I was walked into the our small meeting room where I met another nurse, her name is Whitney and she's getting married this weekend!  I had already smiled more times before 10 am than I ever thought was possible.  

Before I knew it Dr. Lee was in the room with us.  My mom took out our list of questions and we got straight to business!  Dr. Lee showed us my MRI Images and explained that this type of tumor is not a 'fatty' tumor, he showed the color of the tumor and compared the density to the same color as muscle in the images.  He scrolled through many images and showed me that there is a very thin layer of fat encapsulating the tumor.  The tumor lays against my bone with a thin layer of fat separating it from my bone.  He showed how it is intertwined with my muscle.  He showed how the tumor is next to my arteries and nerves.  

He told me that there are a few cancerous types of tumors this could be and one benign tumor that it could be.  In ALL instances, I will need surgery AND radiation.  He told me that he really hopes it is not the benign tumor that it could be, because this type of tumor is really aggressive, would still need radiation, and has a high probability of coming back again and again.  Dr. Lee seemed really concerned not only with removing the tumor now but, with how treatment would effect my mobility in my leg long term! He told me that back 15-20 years ago, when you were diagnosed with Sarcoma - that meant you would lose your leg!!!!  However, with research they have found that with surgery and radiation, I should be able to keep my leg. He told me that they would perform a 'limb-saving' procedure and do what they can to remove all the cancer and preserve as much function as they can.  

You can find out more about Radiation HERE.

Dr. Lee recommended that the next step is a biopsy to determine the type.  He told me that it would be a guided biopsy with a hollow 'punch' needle to gather tissue, all the while the needle would be guided with ultrasound images.  In all, I felt really comfortable with Dr. Lee and his office staff.

Due to the seriousness of this tumor, Nate and I have decided it would be best to get a second opinion.  I will keep you informed as to what Doctor I plan to see next. Time is of the essence so I know it will be soon!

Thank you for all of your love and support.  It means more than I am able to communicate at this moment.  I feel very blessed to live in this medical day and age and I trust and believe that everything will turn out just fine for me.

Love you ALL!

Lotto Ticket?

My Mom thinks I should run out, now, and purchase a lottery ticket!!

Do you know how rare Sarcoma is?  I've been researching this type of cancer and it is almost non-existent in humans!  Today I found out that out of all the cancers there are, Sarcoma is only 1% of those.  And the type of Sarcoma that they think I have is less than 1% of the 1% (If that makes sense to you).

Here is a picture of my knee from last month when it was 6 cm.

Some great news... It doesn't look like the tumor has entered into my bone area! This is GREAT news!

Tomorrow I get to meet my surgeon, Dr. Lee for the first time.

Please pray for his expertise and the speediness that he is able to get me scheduled into surgery.


My promise to each one of you...

I CAN'T wait for my appointment tomorrow!  Lets get this tumor OUT!!

MRI - Results

On Friday, I received a call from my Family Doctor.  He told me that after he and the Radiologist reviewed my MRI results, they both believe I don't have a simple Lipoma.  He told me that the cells are changing and that the changed cells are consistent with Sarcoma, a very rare cancer.  He said that he hasn't been able to get an orthopedic surgeon to take my case since it is most likely cancer.  However, he told me that it is not a 100% diagnosis until they are able to get tissue samples.  He told me that he referred me to and Oncologist Surgeon, and that I should hear from them to schedule an appointment by that same day.  He told me that and Oncologist Surgeon would take extra precautions when removing the tumor, including 'tying-off' each blood vessel so that when the tumor is removed that it won't 'seed' the rest of my body.

Today, the official results were typed up and entered into my medical record.  I've learned that in one month the tumor has grown to 9cm long and is continuing to grow.  Although it is not certain, given the MRI results that it is most likely a type of Liposarcoma.  More specifically and undifferentiated pleomorphic sarcoma, potentially a myxoid variant sarcoma, due to some fluid in my knee.

You can read about Liposarcoma HERE.

Read about undifferentiated pleomorphic sarcoma HERE.



I have a consultation appointment with my Oncologist Surgeon on Tuesday.  Please Pray!

MRI

The next step for me was to get a MRI so that my family doctor would have great images of it so he could send it to the correct surgeon.   He told me that most likely an orthopedic surgeon would need to take it out.

My MRI was scheduled for October 2nd, a Tuesday (The original appointment was scheduled for only a couple days after my ultrasound but, the scheduling was done incorrectly and had to be rescheduled).  My family doctor asked me to get two MRI's completed.  I needed to have a 2 hour time slot scheduled and coordinate my appointment with the Radiologist, since a contrast fluid would need to be administered to show contrast in my 2nd MRI.

Bright and early at 6am, My Mom swung by and picked me up from my house for my 7:15 appointment.  Since I would be confined to a small space inside the MRI machine for a long time, I was prescribed Valium.  So that morning I had Valium for breakfast - I was so happy my Mom was there to drive me..The Valium made me very sleepy!

Everyone in the imaging center was friendly, and very nice.  Including the tech that conducted my MRI.  After each image, would get on the speaker that was hooked to my earphones and let me know how long each image was expected to take!  Even though it was an MRI and it sounded like they were jack-hammering in the same room, I was in a tight space with a warm blanket and I fell right to sleep!  After the first MRI was completed, the tech got on the speaker to tell me that the Radiologist was stuck in traffic!  He told me that once he is here, then he would come in to administer the contract fluid.

Before I knew it two hours was over the MRI was over and I was still feeling relaxed and cozy.

Ultrasound

On September 11th, I went in for my Ultrasound.  The purpose of the ultrasound was to see if the 'cyst' was communicating with my knee joint or if it was completely separate.  Determining this will decide what procedure I will need to have in order to remove the cyst.

I was taken in to a room where an ultrasound machine was hooked up and ready for me.  The woman squirted a warm gel onto the 'fat knee' and proceeded to take a series of images.  Her and I got talking about everything from my career, to her kids, to whats shes going to eat for dinner - I really liked her. I think because we were so friendly, she decided to tell me that I didn't have any fluid in my knee.  I was shocked.  I told her that I was pretty sure there has to be something in there.  She told me that she's not telling me there is nothing in my leg, shes just telling me that it's not fluid.  I asked her what she thought it was then...? She told me that shes not allowed to tell me, in fact she shouldn't have said what she already did.  She did tell me that whatever it is, that it is quite large - 6cm already!

She told me that she would like me to wait in the room for a couple of minutes.  She wanted to show the Radiologist the images.  She told me that sometimes the Radiologist will come back in and talk with the patients.  So, I sat back, kicked my feet up and played Candy Crush on my cell phone.

About 20 minutes later, I was surprised when the Radiologist DID come to see me.  He barely said hi to me before he too squeezed the gel on my knee and was looking at the images on the screen (Later on, I learned that Radiologists don't have the best 'bed-side manner' and I laugh because that couldn't be a more true statement).  After a few scans, without even making eye contact told me that I had a tumor in my leg and that I need to get it removed.  He told me that most likely it is a 'Lipoma'.  He told me that they are most of the time they are benign.  He told me to prove it to me he would check for blood vessels.  He switched the settings on the machine to show blood vessels.  He told me that the tumor in my knee has many blood vessels.  Actually more than he typically sees in these type of tumors.  He turned to me and made eye contact.  He told me, "You need to get this removed ASAP, I cannot promise you that this is a benign tumor based on what I've seen.  Do not wait more than 3 months to get it out."

I made his last statement to me my mission!

First Dr. Appointment

On September 4th, I had my first Doctor's appointment.  My first Doctor's appointment was very brief.  In fact, it wasn't with a Dr... but, his Physician's Assistant (PA).

I explained to her that I noticed my right knee was fatter than the left knee and I wasn't sure why.  She inspected my knee and told me that my knee was fine.  She grabbed onto the 'fat' part on the inside of my right knee and told me that she thinks that it is just muscle.  I explained to her that my knees have always been thinner and Im pretty sure its 'something'.  I asked her if we could please do an x-ray "just to see"?  She agreed to the x-ray and send me to the next building over to have my x-ray done the same day.

I made it to the other building in 2 minutes and in another 2 minutes, I was in the x-ray room!  The x-ray tech got me set-up quickly and before I knew it, the first image was done while I was sitting down. Then he had me stand up for a inner side profile x-ray.  He told me that he has seen lumps like this before and that most likey it is a 'Baker's Cyst'.  He took the x-ray and viewed the image on the computer from his blocked off area.  He said, "Yep, there's defenately something in there."  I asked if I could see the image and he told me that I couldn't.

Between that night and the next morning, I must have called them 4 times.  On Thursday nights we play softball and it was Thursday... I wanted to know if I could play!  I recieved a call back from the PA's assistant, she told me that I had a Baker's Cyst and that I would be referred to Imaging for an Ultrasound of the 'cyst'.  She told me that I shouldn't play softball becuase they are afraid that I would rupture it.

I scheduled my 'cyst' Ultrasound for the following Wednesday.