A quick update

Good Morning and Happy Friday!

I wanted to post a quick update, to keep you all in the loop.

Good News!!!  It's official, after a long year of being a new Agent, Yesterday I signed my contract with State Farm!  Here is a picture of me signing the contract, and another with Therese (my sales leader) and I.

Yesterday morning, both Nurse, Caroll and Nurse, Regina called me before 11am!

Nurse, Caroll called to make sure I received Dr. O'Donnell's voice message and to see if I had any questions.  I told her that I appreciated her persistence in having Dr. O'Donnell call me in between surgeries on Wednesday.  I told her that my only question was about my x-rays.  I explained that Dr. O'Donnell didn't mention anything about it in his voicemail, so I was assuming that they weren't a concern..?  She told me that my chest x-rays came back clear.  Praise God!!

Nurse, Regina was calling to schedule me PET CT scan.  We played phone tag all morning.  I finally left her a message.  I told her to book my PET CT scan for the first available appointment.  I told her that I would make whatever date or time.  I believe the rush is to get this scan done before next Friday's Sarcoma Tumor Board meeting.

Yesterday, I got the chance to talk to a friend of mine who is in the Medical sales field.  She has been in on various Oncology Boards in the past.  She told me that when she attends, there were no sales involved, she was just there to listen in on the discussion.  She told me that only the best of the best are in these Boards.  She explained that they only discuss 3-4 cases and they typically meet once per month or twice.  She told me that only the rarest cases make it to the discussion.  She said that they will put all of the scans, notes, images, etc on a large power point in the front of the room and the surgeon will present all of the 'evidence' on the case.  Then she said, "This is where the Great Debate takes place."  She told me that surgeons will give their opinions on the best way to proceed with treatment and surgery.  They will cite medical journals, etc. in order to back what they think is the best!  She said that in some cases, they will even yell and argue with each other as to the best way to proceed!!

I feel so blessed to have so many doctors and surgeons reviewing my case!  There is knowledge in experience, and the more experience, the better!!

You can only control your attitude.  My attitude is one of strength and happiness!  I will come through this victorious!

Thank you for reading!

News from my Surgeon...

I hope your day was good!

Today, I got to celebrate my FIRST Boss's Day!  I can't tell you how weird it is to hear someone say that but, I have the very best Team who remembered!  They got me a thoughtful card and want to take me to lunch... How thoughtful!!!

I heard back from my Surgeon today!  In my book, any news is good news!  I called my Doctor yesterday and again today and just as I stepped into my afternoon appointment with my clients, I could hear my phone vibrating in my drawer!

Surgeon O'Donnell left me a rather long message.  He was in surgeries all day, and took the time to call me in between.  While I was hoping to hear that he made a mistake in my diagnosis, I was still glad to hear from him. I honestly believe that he is the very best Surgeon for my case.

He told me that he waited to talk to me until he talked to Pathology directly.  He told me that Pathology said that it is a Myxoid Liposarcoma.  This tumor is malignant.  He told me that they still considered it a low grade tumor but, made sure to tell me that until they get the tumor completely out and test it, are they entirely sure.

Read about a Myxoid Liposarcoma HERE.

Due to Pathology thinking it's low grade, he will proceed with low grade treatment, until he hears otherwise.  He told me that he recommends surgery and radiation therapy.  He told me that he will start the radiation treatment during my surgery and put it directly into my wound where the tumor was and sew me right up!  I will then need follow-up radiation treatment.  He sent me a referral to the Radiation therapy specialist.  He told me that they will get in touch with me to schedule a consultation appointment.

He told me that he will have his assistant schedule the PET CT scan and then that same day, I will go back in for an appointment with him to discuss my surgery. The PET CT scan will help Dr. O'Donnell get closer to confirming what stage the tumor is. Also, by having a picture early on, Radiation will be able to see week by week how the radiation therapy is progressing by comparing it to the initial image.

Read about a PET CT Scan HERE.

Then, he went on to tell me that since Sarcoma is so rare that prior to my surgery he will bring my case forward to the Sarcoma Tumor Board on Friday, October 25th.  This Board is composed of the very best in the Sarcoma arena.  They will discuss my case and together decide on the very best way to operate (I had no idea that this Board existed).  Wasn't that a loooooong message?!  I was so thankful that he took the time to leave this message for me.

Learn more about the Sarcoma Tumor Board HERE.

He didn't say anything about my x-rays.  I'm assuming he was busy in between his surgeries and that they must not have raised any red flags or he would have addressed them...?  (I'll be calling them again tomorrow)

Please continue to pray for me and my health.  Pray that they PET CT scan gets scheduled soon.  Pray that I am referred to the very best Radiation therapy.  Pray that the Sarcoma Tumor Board is on their very best next Friday for the review of my case. Pray that my surgery gets scheduled at the very best time for the surgeon after all of his research is done.

Then Jesus said to his disciples: “Therefore I tell you, do not worry about your life, what you will eat; or about your body, what you will wear. For life is more than food, and the body more than clothes. Consider the ravens: They do not sow or reap, they have no storeroom or barn; yet God feeds them. And how much more valuable you are than birds! Who of you by worrying can add a single hour to your life? Since you cannot do this very little thing, why do you worry about the rest?  Luke 12:22-26

Patience

Paitence seems to be the theme when you have cancer!  Good Grief!  Waiting for the Surgeon, waiting for the Pathologist, waiting to hear back!  A woman could go nuts without the support from friends and family!

(Waiting for the Surgeon)

(Waiting for the Pathologist)

Last week the surgeon ordered a biopsy and x-rays.  He told me that I should hear back about the chest x-rays first and the biopsy early this week!  This seems to be the only thing occupying my mind!  After calling twice yesterday and leaving messages for his assistant, Regina (remember the lady who gave us the "raw" bar when we were in the waiting room?).  I decided to hold off on a third phone call until today.

The chest x-rays should give the Surgeon an indication if there are any other tumors in my body.  Recently, I've had chest and stomach pains but, I believe that it is just stress causing it!  My surgeon just wants to make sure.

The biopsy will tell the surgeon how to proceed with treatment.  For example, will I need radiation before or after or during surgery? How big will the surgeon make the incision?  These questions will be answered by Pathology.  Most importantly, they should be able to book my surgery date.

I hope to hear back really soon!  I will update you just as soon as I hear!

Thank you for praying for my husband - he's been feeling a lot better!

Please continue to pray for low grade tumor results with clear x-rays.  Pray the the Surgeon is in good health and continues to provide excellent treatment for other patients.  Please pray that I'm able to get in to surgery quickly.  Please pray for my Mom, she's sick with the flu.

Love you all!

Knee photos

We haven't heard back from my surgeon's office yet.  We should by early next week.  Here are some updated photos of my tumor.

It's hard to see my tumor from the front of my knee.  It starts in my thigh muscle towards the back of my leg and wraps around the front of my knee and then down into my calf muscle.  It is mostly inside muscle.

Here are photos I took this morning.  Here are my legs side, by side again.  The tumor is in my right leg, so when you look at the photo - its the leg on the left...

I turned my right leg out to the right, and with my left hand sort of put my hand on the top of the tumor so you can see where it begins.  I think it is more visible from the side.

This weekend has been really relaxing. Hearing on Thursday that the tumor is most likely low grade, has really allowed us to have a great weekend.  I've been feeling good, just really, really tired.  The surgeon said that this is normal.

Have a great sunday!!

Where to send notes, cards, flowers, etc...?

I've been asked frequently for my address to send notes, cards, flowers, etc...?

I appreciate lots of you wanting to do this, but please do not fell that you have to.  Just keep reading and supporting me, and I'll feel loved that way!  However, if you must... please send them to my Agency.

Jennifer Knighten, Agent
State Farm Insurance
4711 Manzanita Ave
Carmichael, Ca. 95608

I have an absolutely WONDERFUL team that is there Monday - Friday from 9am - 5pm.  I go into the office frequently and have been picking up items that people have sent to me.

Again, please don't feel obligated - I get this question a lot so I figured I would post about it.

Love you all!

Happier Thoughts - Our Anniversary Trip

Our 3-year wedding anniversary was on Sept 10th.  If you've read my previous posts, you will know that on Sept 11th, the day AFTER our anniversary is when we found out that I had a tumor.

On our anniversary, I was at a seminar for a majority of the day.  When I got home, sitting in the table was something wrapped up with a big bow on top!  I ran over to the table, and ripped open the plastic bag.  Inside was a new wool coat!!  Nate got home and I thanked him over and over!  We both got ready for a nice dinner.  While at dinner, Nate told me that the coat was the first part of my surprise.  He told me that he booked a trip to New York for the week of New Years!!  A trip of a lifetime!  He got me the wool coat to wear while in New York!  I was on cloud-9!  He booked our flights and paid for our hotel that is located right in Times Square, right next to the ball drop!!

The next day we got news of my tumor...

This whole time, we have been worried that we wouldn't be able to go on the trip - the non-refundable trip!  Yesterday, we decided to ask my Surgeon if it is even remotely a possibility to still go on the trip?  If not, we wanted to get a doctors note and start the process of at least trying to get our trip re-scheduled.  Yesterday, Dr. O'Donnell told us that if I get surgery within the next month, that most likely it would take 6 weeks to walk again and that I should be back on my feet in time for the trip!!!!!!  He told me that he would make a gap in my treatment so that we could go on this trip! He made me promise that while on the airplane, that I would get-up and walk the isles so that I wouldn't get blood clots in my leg.  I told him I would!

This trip is symbolic of so many good things....  My husband booked this trip BEFORE we knew of any of this.  He booked this trip without a care in the world.  For the last month, I've said so many times that I wish we could go back to the way it was.  I wish none of this happened.  We were beyond happy that the Surgeon told us that there is a high probability that we could still go!  Time to plan our activities for this trip!  What a GREAT distraction/fun-time this will be!!  Nate has already bought tickets to see Wicked on Broadway, and the Rockettes!

Please continue to pray that my surgery gets scheduled within one month and that the tumor comes back low grade!

I want your help planning our trip!  What activities should we do while in New York during the holidays?

Love you all!!

Our Trip to UCSF Cancer Center

We had a great day with some great news!  As God continues to work in my life, I can't wait to tell you all about it!!

We woke up really early and left our house by 7am.  Nate and I had to fax 45 pages of the UCSF new patient packet and medical records over to UCSF.   Nurse Carol asked us to send it in early, so that the medical team could have everything in order by the time the Surgeon came in.  We went over to Staples and then afterwards went to Starbucks to get a coffee for the trip!

We were lucky enough to not hit any traffic, and had a very easy drive in!  It was really fun driving into the city and over the new bridge!
  

We got to the Cancer center by 11:30 for our 12:15 appointment, and we were lucky enough to get valet again!  Whoever thought up valet in these busy hospital areas is genius!

As we made our way in I paused.  I felt as though I didn't belong.  I didn't want to be there.  I wanted to turn back around and go back home to my normal life and my normal routine, the way it was!!  My eyes welled up with tears!  God gave me courage as I reached up and held my heart necklace.  I kept walking to the elevators and told myself that I am brave, that God and my husband are with me, and I can do this.  I got into the elevator and this was staring me right in the face!  My new Surgeon made the hospital's 'Honor Roll'!!

I was greeted at the front by a very nice woman who had me fill out a bunch more paperwork.  She told me that the appointment will take about 45  minutes.  She told me that since he is the top Surgeon at the Cancer center that his schedule is very busy, and told us never to be late (good thing we were early).  She also gave me Dr. O'Donnell's business card...  Check out his business card!  Orthopedic and Sarcoma??.. Could he be ANY more perfect or specialized for my situation??

Then, I got to meet Dr. O'Donnell's assistant, Regina. She made sure everything in our file was correct and seemed really nice (I think I'll be seeing a lot of her in the future)!  We asked her where we could get a quick snack.  It was already noon, and we could feel our stomachs grumbling.  Regina described where it was but, it seemed so far away, we decided to take a seat and not be late to the appointment!  Before we knew it, Regina came out into the waiting room and brought us a Raw Revolution bar from her purse (how thoughtful)!!!!  She told me that with everything going on that it is important for me to eat when I'm hungry.  The bar was really good too!  (Thanks Regina)

Right at 12:15 we were taken back to my exam room where we were greeted by a Resident.  He is a Doctor from New York who told us that he only wanted to train with the best.  He took lots of notes and asked lots of questions.  His job was to get a good outline going until Dr. O'Donnell was able to come in.  About 20 minutes later, Dr. O'Donnell came in.  He examined my knee and did a lot of typing.  He would ask a couple questions, then type.  Feel my tumor, then type.  He asked Nate some questions, then typed some more.  He was trying to be very thorough, so Nate and I sat very quietly and didn't interrupt.  When he was done.  He turned to us to discuss what he thinks and what my next steps should be.  He told me that at this point, the tumor could be anything from a low grade tumor to high grade.... in other words, he wasn't sure.  He told me that TODAY I was going to get a biopsy and x-rays.  He went over a couple 'what if' scenarios.  He explained to me that 'bad' tumors are really stiff, and 'not-so-bad' tumors are soft... mine is SOFT!!  He also told me that my tumor, on an MRI looks mostly homogeneous; picture vanilla ice cream with a couple almonds.  He told me 'bad' tumors look like rocky road ice cream (gross)!

I felt like our prayers had been answered.  He was truly an Angel.  He was very calming and to me, it seemed like he'd been there before.  I felt like I had a plan leaving there.  Off to get a biopsy!

After leaving the Cancer center, we walked directly over to Fine Needle Aspiration (FNA) for my biopsy.  We walked in and were quickly checked in and taken to the procedure room where the doctor greeted us.  She went right to the lidocaine to get me numbed up.  She must have poked my knee about 10 times before I got white, clammy, and almost passed out!  She had to stop what she as doing and attend to me!  The woman with a freaking tumor in her leg can't stand to get numbing solution put inside it!  Nate and I laugh about it!  The Doctor got me a pillow, water, and laid my chair back.  Then she proceeded to poke my tumor another 5 times.  She told me that she gave me a 'horse-dose' of lidocaine because the tumor is right on my nerve.  She wrapped me up in a blanket before she left.  She told me that when you almost faint... that all the blood goes to your brain, so you end up being ice cold everywhere else!

Nate and I waited in the one procedure room for the other room with the ultrasound to open up.  After 40 minutes, I was good and numb and the other room with the ultrasound machine was ready! We were quickly moved in and set-up.  She performed the ultrasound, and then set-up her needle (it was 2 feet long!).  Good grief, at least I was laying down already!!  She put the needle directly in the center, and did this up and down motion, left and right - as though she was 'stirring' my tumor but keeping the needle in the same hole.  It was disgusting!  The location where the biopsy was taken from my tumor, one word = painful, yes even with lidocaine.  Right then and there, she put the sample onto a slide...

She turned around and told me that from what she can see..."I believe it is low grade."

I give God all the glory here.  Because of him, I will most likely not need to have Chemo Therapy!!!!  I will still need Radiation after surgery but, this means my hospital stay will be much shorter!!!!!!

After this news, Nate and I were very excited!  We went straight to get my x-rays completed.  The Doctor ordered x-rays on my knee and on my chest.  I believe my chest pains are from stress but, the Doctor wanted to be on the safe side!

Can you believe we did all of this today?  We were only planning on a 45 minute appointment.  By the time we left it was 4:30! We were so starving!  I told Nate that I really wanted Sourdough and a glass of wine!  We had received amazing 'Low Grade" news and we couldn't be happier!!!!  We had dinner at Boudin and left the city at 5:45.

Please continue to pray for my knee.  Pray that the biopsy comes back low grade, with no surprises.  Pray that the surgery gets scheduled with in the next month.  Pray that my chest x-ray comes back with nothing.  Please continue to pray for my husband's health... he's still not feeling 100%.

I appreciate that support from each one of you. 

Love you all!