No news... is good news?

Good Morning!

I hope you all enjoyed your weekend!  Nate and I went golfing and then spent the weekend in Truckee with friends.  We had a GREAT time.  I was happy that we were back with enough time to still get our laundry done for the week and watch the 49er game!

Recently, I've noticed the views on my blog start to tick up and I've received a lot of text messages from friends wanting to know if I've heard anything yet.  I figured I would update everyone with a post.

UCSF Sarcoma Board

Last Friday, Sept 12th is when the Sarcoma Board was going to review my scans and let me know if there is anything to worry about.  Dr. O'Donnell did tell me that he would call Friday after the meeting, or over the weekend, or the following week.  What a large rage of dates!  As of today, I still haven't heard from my Oncology Surgeon.  Boooo!  I had my phone on all week just waiting for it to ring with Dr. O'Donnell's name, but no such luck!  Im hoping that no news, is GOOD NEWS!

This morning, I called UCSF and they were still closed.  So I e-mailed Dr. O'Donnell with a friendly reminder.  Hopefully, I'll know more soon.

Pain in my Knee

As of the last week and a half, I have been experiencing some pain in my right knee area again. Not in the same spot as my incision though. This pain is not the normal sore/tight feeling I have daily in my leg (quite frankly, I've gotten used to that pain). This is different. The back of my knee area, towards the right side of the crease, is really tight and painful.  I notice it more when I straighten out my right leg. In fact, Nate (my husband) has told met hat he can feel a difference and he can visually notice it too.

I also e-mailed Dr. O'Donnell regarding this pain.  I just want to make sure it's nothing to worry about!

I'll update you all as soon as I hear!  

I hope you have wonderful Monday!

Follow-up Oncology Appointment at UCSF

I hope you're having a great day!!

This post is a continuation of my last post. I just obtained copies of the Radiologist findings/reports from my follow-up CT scan of my chest, and my Right leg MRI... and I didn't sleep well the day before this appointment!

UCSF, Here we come!

I'm always excited to see Dr. O'Donnell, Last Thursday, September 5th - I was even more excited.  After reading the radiologist findings, I couldn't wait to see him and see what he had to say!  I was hoping that the Radiologist reports were wrong!  Read my last blog post HERE.

I woke-up at my normal 5:30am time and went to the gym.  This has been my routine since finishing up Physical Therapy in April.  I went to work and came back home around 11:30.  Since you can never predict San Francisco's traffic, Nate and I like to leave early - better safe than sorry.  Im so thankful that I have my husband to drive me all the way out to the city!!

I wore yellow for my appointment - since yellow is the ribbon color for Sarcoma and because Im stronger than Sarcoma!!!

Follow-up Appointment

My appointment was scheduled for 3:10pm and we arrived in the waiting room around 2:30pm.  I was called back almost immediately for my vitals (blood pressure, heart rate, weight, etc).  I returned to the waiting room until a room opened up for us.  Tuesdays and Thursdays Dr. O'Donnell is 'in clinic', which is fancy for 'he's seeing patients and not doing surgeries'.

The current Resident came in first to examine me and start the log notes for Dr. O'Donnell.  I can't tell you how many Residents we have met during my treatment at UCSF, but its been a ton!  Since UCSF is a school, they do a ton of teaching and it's nice to know that they are learning from such a specialized surgeon like Dr. O'Donnell!

Dr. O'Donnell came in an also examined me.  He told me that the Radiologist who typed up my reports didn't compare the images with my last scans.  He seemed irritated that the MRI images weren't done on the high-powered Tesla 3 MRI machine, instead they were done on a Tesla 1.5.  He told me that in the future he wants all of my scans done by UCSF.  He told me that he was trying to work with us to minimize the drive time but, that from here on out we will need to drive out to UCSF.



Dr. O'Donnell's summary:

1. Dr. O'Donnell told me that my thymus wasn't a concern to him.  
2. He told me that he did notice the extra nodule (spot) on my scans.  
3. He also told me that there is now a 3.5-mm bone island on my T-11 vertebral body but, that the images aren't showing a lesion into my bone.  This is good because it is not a concern at this point.  Read about the dangers of a Bone Island HERE
4. He told me that my Seroma has doubled in size and that I have more fluid on my knee than before.  He confirmed that the Seroma has an irregular thick advancing wall and it is giving a bright T2 signal on the MRI (same brightness as my Cancer showed before). 

Sarcoma Tumor Board

Dr. O'Donnell told me that he would like to present my scans to the sarcoma tumor board that will be meeting on September 12th (Next Friday).  He told me that they have the BEST Radiologists and Sarcoma specialists.  He would like them to review the images and he told me that he would call me that Friday or over the next weekend to let me know what they discussed.

Read more about the Sarcoma Board HERE

PET CT Scan

Dr. O'Donnell also would like me to come in for another PET CT scan.  Since over-radiation is a concern (I just had a CT scan done a few weeks ago), He recommended that I wait until next month to get my PET CT scan done.  He added that he might have a hard time getting the PET scan pushed through insurance if we don't wait until next month, because they only pay for one per year.  He looked at my file and realized that the last PET CT scan that I had done was October 25th, 2013.  He told me that he would have his assistant schedule me right after this date so that we wouldn't get any push back from insurance... PERFECT TIMING!

Read more about a PET CT Scan HERE

I was able to talk to Dr. O'Donnell's assistant on Friday, and I have a PET CT scan scheduled for October 27th with a follow-up appointment on the results scheduled for the very next day on October 28th.  Dr. O'Donnell doesn't wait for anything!!!

At this point I don't have anything conclusive to report until after the Sarcoma board meets on September 12th.

I'm hoping an praying for good news!!

Thank you for reading!

3-Month Follow-up Scans and Results!

I hope you are enjoying your Saturday!

I woke up this morning with a sore throat.  I've been taking it easy today and though I would update you on my most recent scans.

MRI & CT Scan

Towards the end of August, I was scheduled to get my follow-up scans. I got the MRI of my right leg and a Chest CT Scan at an Imaging center up in Auburn.

I had to get both scans on different days due to the different contrast fluids that they inject me with.  For the Chest CT, they inject me with iodine.  If you have had a iodine contrast injected in you before then you know the almost indescribable feeling!  You get hot in your throat, then it burns, then it travels down your body, then your left feeling like you peed your pants!  So weird and so funny all at the same time!  

My Mom was kind enough to drive me to these scans.  Dr. O'Donnell gave me a prescription for Valium for these days that I have scans.  The Valium helps me relax, since I'm in a small tube for up to 90 minutes!  I certainly cannot drive to or from my appointment.  Anyways, I'm very grateful for my Mom for always being there to take me!

Copies of Images and Reports

Whenever I have scans, I always get copies to bring with me to my Oncology follow-up appointment.  Dr. O'Donnell likes to have a master record of all of my scans on file.  I'm never able to get copies of my reports (Radiologist findings), until it has been over 7-days.  This is because they want the chance for my doctor to read them first.  Typically a patient would have a follow-up appointment within a few days of the scans, so you can hear it directly from the doctor - instead of reading them yourself.  There is definite ups and downs to the procedure!  I always like to know ASAP - good or bad, I just want to know.  Its the waiting that kills a person!

This time since my follow-up appointment wasn't until 10 days after my scans I was able to get copies of the radiologist findings prior to my appointment.  Here is a summary of the findings...

1. CT Scan
1. An additional spot was found in my lungs.  The original 'spot' was found on my left lung measuring 4mm, the second spot was found on my right lung measuring 3 mm.  Still very tiny, but concerning that there are two now.
2. "Probable residual thymus".  Read about a Thymus HERE.
2. MRI of Right Leg
1. The Seroma in my Right knee has some "irregular advancing tissue" and they are unable to rule out a 'residual tumor' at this time.

Lets just say I didn't sleep very well before my appointment on September 5th!!

"But those who hope in the Lord will renew their strength.  They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:31

Thank you for reading!

Results are in... Decliared N.E.D!!

It has been approximately 4 months since my last blog post and 3 months since I heard some great news!

Sweet Victory!

I have some FANTASTIC news to share with each one of you!  On May 6th, 2014 At my Oncology follow-up appointment, I was declared NED (No Evidence of Disease)!  The results came back and showed no evidence of Cancer anywhere!  BOOHYA!

Im considered NED!!  I've waited so long to hear those words!!!  What a relief.  I will be considered "Cancer-Free" once I have had clear scans for 5 years!!

What to do with the Seroma

Of course, I asked him about getting the Seroma out of my leg.  Dr. O'Donnell explained to me that when a large tumor is removed from the body, after they sew up the incision, there is a large hole where the tumor once was.  The Seroma is a pocket of fluid that forms in that hole.  He told me that approximately 5 years ago, whenever a patient would get a Seroma in their leg - they would stick a needle in it and test the fluid to make sure there are no cancer cells in the fluid.  He told me that 100% of the time there were no cancer cells.  He said that it is very rare in medicine to get an absolute 100% no cancer cells, therefore he is certain there are not cancer cells in the Seroma.  He told me that mine isn't infected.  He told me that with time, mine will just absorb into my body.

Can we have babies now?

My husband and I have been waiting until after this cancer situation is resolved to be able to start a family.  Since My scans came back clear, we wanted to know if now we could start trying.  Dr. O'Donnell told me that he really doesn't want me to get pregnant because when I'm pregnant he wouldn't order any scans on my body.  He told me that he follows the stage of the Cancer as a rule.  For example, if I had state 2 Sarcoma, I would need to wait 2 1/2 years.  If I had state 3 we would need to wait 3 1/2 years.  He asked me to wait at least 12-18 months from when I finished up Radiation.  He told me that he would let us know when we could start trying.

Nate told me that we should use the next 12-18 months to travel and for me to build up my strength.  I finished up physical therapy in April and I was still really weak in my leg.  I'm looking forward to the traveling part of the next 12-18 months!!

Follow-up Scans

Dr. O'Donnell told me that 50% of the time, if the Cancer is going to come back - it will come back within the first 12-18 months.  He suggested that I have follow-up scans every 3-months for the foreseeable future.

Every 3 months I will have a MRI on my right leg.  Did you know that MRI's don't give off radiation?  They are even safe to get when you are pregnant!!  He will also monitor the spot in my lung too.  He told me that since the CT Scans give off so much radiation, he will alternate a CT Scan with an x-ray of my lungs every three months.  My next MRI and CT Scans will be in August.

Dr. O'Donnell is very thorough... If there is any residual tumor that the Radiation didn't kill, he wants to catch it early.  He had me think about it, and explained, if there are stage-1 tumor cells left behind, by the time he catches it growing, it could already be stage 2 or 3.

All and all, this was a day I will NEVER forget!  To hear the words "No evidence of Disease", was an unforgettable moment!!

Thank you for reading!