One Week Post Surgery Update

Hi!  I hope you are enjoying your Thursday!

Its been one week since my surgery and I am doing really well!!  I've gotten my pain managed, Im walking three times per day, sleeping a lot, and doing my breathing exercises.  Most importantly - Im doing really well!!


VATS Procedure 

Last week, I had a VATS procedure done to remove tumors from my right lung.  The surgery ended up being fine, although it had a rough start.  It was supposed to take 2 hours, when I went in at 10:45am.  However, I didn't get out until 4:30pm.  Yikes!!  My husband and family were a little freaked out...  I think it was all my fault!

Here's the photo that was taken right before they wheeled me off to surgery!!

I thought it would be a 'great' idea to quit breastfeeding the day before surgery.  I woke up Thursday morning, the day of surgery, incredibly engorged.  Painful.  At the hospital, I explained this to the nurse and I told her that I was literally spraying milk.  I asked her if I could make some 'hospital pasties'... she laughed and handed over gauze and tape.  I didn't want to be spraying during surgery.

At 10:45 am they rolled me back into the OR... It was time to place the epidural.  I was instructed to sit on the edge of the gurney with my head placed on the OR table. In doing so I was spraying milk everywhere. Even my hospital pasties were soaking wet and fell off. I ended up fainting from the pain.  They laid me down waited a few minutes and then sat me up and tried to do it again. I fainted again. At this point they didn't want to call-off my surgery but, they knew I had to get the epidural put in or they weren't going to start. So the nurses went looking all over the hospital for a pump  that I could use. They found me a pump!!  So, there I lay, on the gurney next to the OR table, in the OR, pumping milk. I couldn't help but look around and laugh to myself I wondered how many times have they seen something like this in the OR??  After I was done pumping I got up on the OR table and thats the last thing I remembered. Lol!!  Im still laughing about this!

My poor family was so worried about why my surgery took so long... and this is why!!

Pneumonia

The biggest risk I face currently, is getting pneumonia.  My right lung isn't inflating all the way, Im laying down a lot and because of this my Dr has me walking three times per day, and doing breathing exercises.  I started really slow but, I can see improvements and it's encouraging.

Hospital Room

After my procedure they rolled me into a hospital room I am mediately just got the hugest smile on my face because I was in a room by myself with no other patients.  I had forgot to request a private room so I wasn't sure what I would get.  The nurse that rolled me into the room said that she had heard how nice I was to all the nurses earlier and throughout the day and during my recovery time and because of that she not only gave me my own room but made sure I had a gorgeous view of the ocean and San Francisco.  So thoughtful!!

Debriefing with Dr. Mann

Two days later Dr. Mann came to meet me in my recovery room. He told me that they ended up taking a wedge resection of my right lobe. He said he wanted to take a larger area just in case. He said he felt the tumors in between his fingers and rolled them around. (Ew!!) he told me that he was 99% sure that it that it was sarcoma and he was really confident that he got it ALL!

He told me that He sent the tumors off to pathology,  It should be about 5 to 10 days and he'd have some results back.  He said he'll bring them to the next tumor board at the first week in January. Dr. Mann told me that he was pretty sure I wasn't going to need chemotherapy however he will leave the recommendation up to the doctors who specialize in that.

Check out the NASTY chest tube that drained the fluid from my lung!!  Probably the best and worst feeling ever when it was removed!!


Christmas Miracle

The best news of all is that I was able to return home to our son on Christmas Day.  It was the best feeling in the whole world to get the hold and kiss JJ after not being with him for close to five days.  My sister brought him to my Mom's house and my whole family was there. What a homecoming that was. I laid on the sofa and all my family; nieces, nephews, sisters, Nate, JJ, my mom, and my dad. They all started opening up gifts (they waited for me), and I had a moment where I was completely overwhelmed with emotion. I put my head in my hands and I cried.  My Mom looked up at me and said why are you crying? And I looked at her and I said because I am so thankful to be here, right now, in this very moment.

Thank you all for all of your prayers!  Can you believe that I have beat cancer TWICE??  Amazing!

It will be a yellow Thursday

2 days until surgery!

I want to ask each of you to do something for me on Thursday but, before I get to that I want to tell you a little about my Anesthesiologist appointment.

Anesthesiologist's Phone Appointment
On Friday, I was able to talk to Nurse from the Anesthesiologist's office.  She had a lot of questions for me about my health background.  Overall, I'm a pretty healthy person so there is not a need for any additional tests prior to surgery.  She asked me how I was feeling about my up coming surgery.  She told me that this weekend, I need to rest, and relax.  She told me that the last thing I need to do is stress out about anything.  She is mainly concerned that I don't fall ill.  If I do get sick, they won't be able to operate.

She also told me that since I can get low blood sugar easily, that on Wednesday night, I will need to have dinner then eat AGAIN before midnight.  Midnight is the cut-off for food for me.  She told me that they moved my surgery time up... I will now need to check-in at 10 am, for my 1pm surgery.

She also prescribed me Xanex.  She told me to take Xanex Wednesday morning, again on Wednesday night, and again on Thursday morning (good grief)!!  She told me not to stress because it will increase my blood pressure and cause me to recover a lot slower.

She told me that a majority of patients have their own rooms.  She told me that it can always happen where you are in the room with another patient, but that it is really rare.

It was really comforting talking to this nurse, she was very friendly and made this totally unexpected surgery for me sound VERY routine to her.  I'm thankful for the Nurse.

This Thursday (2 Days)

I want to ask each of you to do something... for me!  As many of you know the color for Sarcoma Awareness is YELLOW, yes yellow!!

I thought it would be fun to ask if you would wear yellow on Thursday, for me and to bring awareness to this very rare cancer? 

If you are able to, post a picture on Facebook, text, or e-mail me a photo of your yellow!? Use the hashtag #JenBeatsSarcoma  I just thought it would be so fun on Thursday, that once I've recovered from surgery to check my phone and social media, and see all the yellow and know that you were thinking of me and bringing awareness to this very rare cancer.  It will just make me smile!!

Thanks for reading!!

Q & A, and Mark Your Calendars!

I hope you are enjoying your Sunday!!  One week until Christmas!

I've been getting a ton of questions... and rightfully so!  So many of you care and want to know that everything will be alright.  I wanted to use this post to answer the questions that I've been receiving.

Size

Q:  How big are your tumors, and where are they?

A: In short, they are small!  About the size of two green peas.  They are located in my right lung, in the lower right side, of my right lobe.  They are close together.  (Small and close together = easier to get out...)

Here are the tumors from my Chest CT.  The images are if you are looking up my lungs from my feet.

Surgery

Q: What exactly will Dr. Mann do in your surgery?

A: When Nate and I asked the same question, he told us that he will performing a VATS procedure. VATS stands for: Video-Assisted Thoracoscopic Surgery.  

Dr. Mann told us that he will make a small incision on the right side of my chest.  He will deflate my right lung and be able to access the lung through the side of my ribs.  He told me that he will be able to use his finger tips to help find any tumors that the imaging might have missed.  He said," I will use my sensitive fingertips to feel every inch of your lung tissue, I will be able to feel an pull out a tumor that is 1mm small!"  This is a much more effective procedure then typical metastasis surgeries.  Dr. Mann is actually in the process of educating other Oncology programs all over about this procedure and how effective it is!  He went on to talk about the fact the my recovery time with this technique will only be 3 weeks!!!!!!!!  

You can read more about the VATS procedure HERE.

Fracture?

Q: Your femur is fractured too?

A:  Yes, unfortunately it is but, its healing more and more everyday!  Here is an image from my MRI scan in November.

Recovery

Q:  What the recovery will be like?

A:  I wish I knew exactly what to expect but, with the lung - that's hard to predict.  Like I mentioned in my previous post, Dr. Mann told us that I will be in the hospital for 3 days afterward. He said the reason for this is pain management, lung inflation, and fluid collection.  

Dr. Mann explained that I will have an epidural in for most of the time that Im at the Hospital.  He told me that I will feel short of breath for a while until my lung work properly again.  He said that I will have a fluid collection tube inserted and he wants to make sure that it is almost dry before I leave and go home!  This is great - no tube when I leave!!  He said that by 6 weeks, I won't even feel like I had anything done!!  WOW

Staging

Q: What Stage is your Cancer?  

A: At this point, we don't know.  Once the tumors are removed, they will be sent to pathology for all that 'fun stuff'.  A few weeks after surgery, I will get a phone call from Dr. Mann with that information as well as a plan for my follow-up.

Mark Your Calendars - My Surgery Date

Q: When is your surgery?

A: We've all been waiting anxiously for Dr. Mann's Scheduler to call me and confirm the date that Dr. Mann threw out. We got the call!!   I have an official surgery date!!  I heard from the scheduling coordinator at Dr. Mann's office.  She told me that I am no longer on a wait list for Thursday- that I am officially booked... and I have a time!  This Thursday, December 22nd @ 1pm!!  We. will need to arrive by 10am to complete paperwork and get to my room by 11am.  

She told me that Dr. Mann is actually trying to get me in for surgery EARLIER and that the time might be bumped up earlier in the day.  I would love to go in for surgery FIRST thing in the am.  I'm not very good at fasting - I get light headed. When I had my c-section earlier this year it was at 5pm, so I showed up earlier in the day and they started an IV of glucose to take away the light-headed feeling.  I should hear back from a nurse this week to tell me if I'd be able to do that for this surgery.

Thank you for reading!!!!

Meeting Dr. Mann, Thorasic Oncology Surgeon

Hi!!  I hope you are having a great day!!

It's the final weekend before CHRISTMAS!  This has always been my favorite time of year.  This year we have so much to be thankful for!

Dr. Mann, our Hero!

During the drive to San Francisco for my Appointment, we were able to look up Dr. Mann and read all about him. He hails from Stanford and Princeton!  From his biography, "His areas of expertise include lung cancer, mesothelioma, esophageal cancer, sarcoma and minimally invasive (video-assisted) thoracoscopic surgery."  Heres a photo of him!

You can read more about our hero HERE.

Driving to San Francisco

My Appointment with Dr. Mann was scheduled for Friday, December 9th at 3pm.  Dr. Mann does a lot of medical research in China, therefore his surgery dates are on Wednesdays and Thursdays and he meets with patients on Fridays from 1-5pm.  

The drive to San Francisco is always so beautiful.  I enjoyed it so much and here is the mandatory bridge photo!

Dr. Mann's Office

Traffic wasn't too bad so we arrived on time and Nate dropped me off to check-in while he parked the car.  Dr. Mann's office is in the SAME office that O'Donnell's was, before he moved locations.  It was fun seeing the same receptionist and walking into a familiar place.  I loved that the receptionist even remembered me!!  

Nate showed up and we had only sat down for maybe 2 minutes when we were called back to our room.  We walked into the room and we both stopped dead in our tracks and looked at each other.  The room that we were in, made us both question what this first meeting would entail... do you see the lined basket on the floor??  

Meeting Dr. Mann

Dr. Mann walked in, and introduced himself.  He sat down and got right to business.  

He said to me, "You have a history of sSrcoma in your right leg."

"Yes", I responded.

"Sarcoma is weird.  Its different than other Cancers, and its really rare."

"Yes", I nodded in agreement.

He said, "Well down this hallway (he pointed out the door), Sarcoma is VERY common.  I operate on Sarcoma every week.  UCSF is the best place for Sarcoma and you are in good hands."

Talk about an opening statement!!!!!

He then went on to tell me that I have two small tumors in my lower right lung that they need to come out.  He explained that this is VERY urgent and that he needed to get me in for surgery ASAP.  He told me that with Sarcoma, that the tumors in the lung can tend to pick up speed and grow fast.  So getting them out soon is important. 

Dr. Mann explained to us that they have learned that the cells of Sarcoma can lay dormant for up to TEN YEARS!!  He said that these cells in my lungs could have been there all along.  In other words, the cancer might not have spread - that they could have been there the whole time.  

He explained that with Sarcoma in the lung, that he won't need to "take margins" (cut out the area surrounding the tumor), instead he will just pluck out the tumors itself.  He said that Sarcoma in the lung tends to "ball up" and he just needs to get the tumor and he will leave the rest.

We asked Dr. Mann about a biopsy - should we just do a biopsy first? He told us, "Well, yea, I could biopsy them, but I wouldn't trust the results.  The risk of a false negative would be too great, and the surgery that I am going to perform is so low risk, that were just going to bypass the biopsy."  He went on to talk about the Minimally invasive procedure that he would perform.

We asked him how soon should we get this done.  To witch he responded, "Wanna do it before the holidays?"  Nate and I looked at each other - "YES!!!"

Dr. Mann told me that he would need me to complete Pulmonary testing as well as blood work prior to surgery but that he was going to get me in on December 22nd.  He told me that I would stay 3 days in the hospital.

If my math is correct - I will come home on Christmas day!!  No Cancer for Christmas!

JJ's FIRST Christmas

My son will be 9 months old by the time his FIRST Christmas comes around and I will be returning home from surgery (BUT, I will be without Sarcoma in my lungs).  The reality is... JJ is 9 months old... he doesn't even know which exact day Christmas is anyway.  So our plan is to celebrate JJ's first Christmas later on that week.  Oh man, we can't wait!

Thank you for continuing to pray!  Love you all!

Appointments, Tumor Board Conference, & my Liver

I hope you are having a good day!

Appointments  

On Tuesday morning (last week), I heard from Dr. Mann's office, the receptionist told me that Dr. Mann had reviewed my images and accepted me into his practice.  She told me that O'Donnell asked that I be seen ASAP.  She was able to get me in to see Dr. Mann on Friday, December 9th at 3:00pm in San Francisco.  She told me that she also needed to book me an appointment with Oncologist, Dr. Jahan for chemo therapy (Ummmm..... I didn't know that I needed chemo??!).  I was able to get into meet with Dr. Jahan on Jan 11th.

Up to this point - I haven't heard anything about a diagnosis.  nothing.  It can kinda drive you CRAZY!!  lol

Tumor Board

I heard from Nurse Carol with Dr. O'Donnell's office on Wednesday (last week).  She called me just to see how I was doing with everything and the fact that I really didn't know "anything" at the moment.  I love that the nurses and doctors really make you feel like family at UCSF.  She explained to me that the tumor board would be meeting again to discuss my recent scans and treatment in the morning.  She told me that she would be out of the office and wouldn't be attending the Tumor Board.  In the past, Nurse Carol would sit-in on the board and take really good notes, then report back to me.  In this case she told me that Nurse Mira would get back to me before noon on the same day that the Tumor Board met and that if I didn't hear that it would be ok if I called in.

I love that Dr. O'Donnell presents my case to the Tumor Board to get options and options from the very BEST in Sarcoma.  From the beginning, O'Donnell has always wanted the best for me.  By referring my case to the Tumor Board - I have a TEAM off surgeons and radiologists looking out for me!  Im SO thankful!

What is a Tumor Board?

The Tumor Board is a 'meeting of the minds'.  Anyone who has anything to so with Sarcoma, and is available that day, meets to discuss the cases presented.  They meet weekly, on Thursday's, from 7am-8am. Typically they discuss only 1-2 cases per week.  Last week they reviews my case!!

To read more about the Tumor Board Conference, click HERE

Results... about my LIVER?

I called about 5 times before I heard back from Nurse, Mira around 11:45 am.  She told me that she had GOOD NEWS!!  That the Tumor board met and that the Lesion into my liver that had appeared to be growing was in fact only a Hemangioma (essentially a birthmark), and more importantly... NOT cancer!!  YAY!  I really wasn't concerned about my liver being an issue, I was more concerned about my lung.  After she told me this information, I asked her immediately about my lung.  Sh told me that her office doesn't specialize in the lung so that she wasn't able to comment and I would need to wait to talk to Dr. Mann at my Appointment on December 9th.

You can read more about a Hemangioma, HERE.

Thank you all for continuing to pray for me, my family, and my Doctors!
Thank you for reading!

What. The. Fracture. (Part 3 of 3)

What. The. Fracture.  (Part 3 of 3)

On Tuesday, November 29^th I completed the Chest CT that Dr. O’Donnell requested.  I was anxious to get the results.  I called the next morning and asked to get a copy of my radiology report.  The woman that answered told me that I needed to wait FOUR days before they would release the report to me.  So I waited…

Four days later, I called O’Donnell’s office to check and see if they received a copy of my report – the Nurse told me that they did have a copy and O’Donnell did review it.  She told me that he asked for the imaging department to overnight my images to him because he wanted to see for himself.  She told me that the following Monday (last Monday), someone would call me.  So I waited…

On Monday I called to get O’Donnell’s interpretation on my scans, and the nurse told me that they just got my images in that day and that O’Donnell would review them and someone would call me Tuesday.  So I waited…

On Tuesday, I called in again.  This time they told me that O’Donnell had reviewed my images and that he was declining to comment… and I just knew…  She told me that O’Donnell referred me to a Thoracic Oncology Surgeon, Dr. Mann.  She told me that they were going to bring my case up to the Sarcoma Tumor board on Thursday December 15, and that I would hear from someone then.  So I waited.

I hope these series of posts Parts 1, 2, & 3 have caught you up with what has transpired over the last two months.  To think… all of this was started because my leg fractured…

What. The. Fracture. (Part 2 of 3)

What. The. Fracture.   (Part 2 of 3)

So I waited and in November, I heard from the scheduling department for all of the scans I needed to complete… 6 of them!

Cervical Spine MRI

Thoracic Spine MRI

Lumbar Spine MRI

Right Leg MRI

PET CT

Nuclear Bone Scan

I was able to complete all 6 of them in a three-day time frame.  I crammed them all in because with nuclear imaging, I wasn't able to hold my son or breastfeed him since I was 'reactive' - I wanted to get them done and FAST!!  Also, Dr. O’Donnell made it very clear that they all needed to be completed before my follow-up appointment that I had made for the week of Thanksgiving.

So the week of Thanksgiving, I headed back to San Fran to get good news!!

I arrived early and O’Donnell was ON TIME for my appointment!  He immediately opened my scans and started analyzing.  He started typing in my file – a lot!  I could tell that he was looking at my lung imaging.

When he was done, he told me that my fracture in my right leg, due to Osteonecrosis, looked to be healing (YAY!!!!).  He told me that he would need me to get yet another scan.  He said that a chest CT would allow my lungs to really expand and be able to get good images of the two nodules that were found. 

If your keeping count – that’s 7 scans during the month of November alone.  Since the beginning of my Cancer Journey, I’ve had 47 scans!  I kept count because there are just so many.  Sarcoma is different - Sarcoma is resistant to Chemo & Radiation.  Without the chemo and radiation to fall back on, to beat Sarcoma, you need to catch whatever it is EARLY, and the Doctor needs to surgically remove it.  This is why I have so many scans.

I scheduled the Chest CT and waited…

WTF - What. The. Fracture. (Part 1 of 3)

WTF - What. The. Fracture.  (Part 1 of 3)

In August, I hurt my femur right above the surgery site, on my right knee.  I could barely walk.  In order to walk up the stairs, I would take one step with my left leg and then It hurt so bad!  And it got worse, the more I walked on my leg the more it hurt.

So when it still really hurt into September, I knew I should call the Doctor.  But which one?  I didn’t have  lump there, so I knew my Cancer wasn’t back but I did have a routine MRI scheduled for the end of October with Dr. O’Donnell.  Instead of contacting my Primary Care doctor, and waiting for a referral to Orthopedics, I decided to contact O’Donnell’s office and see if they could move-up my MRI.

Being the fantastic Surgeon that he is, of course he approved my MRI.

I received the results back and the report suggested that my cancer had returned and this time it was in my bone??!!  I contacted O’Donnell's office right away.  The nurse who answered told me that everything was fine and that I just needed to stay off of my right leg for two months until my normally scheduled appointment in November.  I questioned her... not in a rude way but, because I just needed more information before I stay off of my right leg for TWO MONTHS!!! 

I asked, “Did you read my report?”

She responded, “Yes, clearly you don't have it in front of you.”

I told her that, “I do have it in front of me, on the report at suggested that possibly my cancer had returned and it was in my bone.”

She said “Hold on, let me read the report,” and put me on hold. (She apparently had not read my report??)

She got back on the phone and said she would need to call me back.

She called me within 20 minutes and told me O'Donnell wanted to see me the very next day.

The next day I showed up at O'Donnell's office nervous and anxious.  O'Donnell read the report looked at the MRI scans himself and said I'm actually pretty certain that this is a radiation fracture due to osteonecrosis of your Femur.. basically the bone was dead due to so much radiation.  Most importantly he did NOT think that the cancer had spread to my bone!!!!!!!!!!!!!!

O'Donnell wanted to be certain, so he went ahead and placed orders for many scans to verify that the cancer was not my bone.  He told me that he would check with his Radiation department at UCSF and would get back to me with a time frame.

His Radition department suggested that the follow-up scans be conducted two months later.  That it would be enough time to see what my femur area was doing and he would be able to tell if it was a “positive or negative” progression.  So I waited…

Welcome (back) to my Blog

Hi!! I hope you are having a great day!

Is it just me or is the holiday season flying by?? It’s a busy time of year and I cannot believe we only have 12 days left until Christmas. Time needs to slow down!

As many of you are aware, my Cancer is back... now it's in my lung.

Terrible News

The hardest part in this whole “cancer journey” so far has been telling friends and family the sad news... over and over via text or phone.  Here I am again telling the people I love the terrible news…that my Cancer has returned to my Lung.  Gosh, it’s draining.

The worst part, I can hear the sadness in their voice, the doubt, the negativity, and I feel awful for making them sad.  I really just don't like making people un-happy.  I’m utilizing this blog again because it will help me communicate the updates to everyone.  Now any “sad news” will again come from this blog - and I won’t have to hear the sadness in anyone’s voice!  SCORE!

I will update you on what has transpired this year, in a three-part post so that we will all be on the 'same page'.

Positivity

I love reading encouraging and positive messages – I LIVE for it.  I will beat cancer, I believe it with every fiber in my being.  I LOVE it when my friends and family know this too.  I want you to know from the bottom of my heart that every positive message, card, note, phone call, bubble bath, and flower that I have received thus far makes me tear-up with joy!


How YOU can help me

Like before, I've been asked by each and every friend and family member to let them what they can do to help.  I've thought about it - and I just want you to pray!  Pray for the knowledge and expertise of my surgeon, pray for my husband, son, and family, pray for my quick recovery…

I love you all, Thank you!!!!!!!!!

PET Scan and Results

Hello from San Fran!!  

It is a beautiful day here and everyone is dressed in Giants gear  - so excited for the game tonight!

Your Support 

There is an over whelming amount of support coming my way from many different avenues.  From cards, to e-mails, to Facebook posts, etc.  It is undeniable that so many of you have me and my situation on your minds.  I am forever grateful.  My last post Disappointing MRI Results, has received the most views out of any of my previous posts to date!  Thank you.

Look out San Fran, we're here!

Nate and I arrived in San Francisco on Sunday.  He is in town for a Doctor's convention, so it worked out perfectly with the scheduled scan date and him already having a hotel room booked.  I always take photos of the bridges when we cross them!!

Yesterday, I woke up bright and early for my scan.  I took my first Cab (Uber) ride by myself, over to the Radiology center.  I arrived at 7am to check-in.  I went immediately get set-up with an IV, then they bring in the radioactive sugars in a metal box...

It is so interesting to me that even the syringe is incased in metal... but, somehow its ok for my body?!

I did really well with the Radioactive sugar injection and I didn't barf (last year I got really sick).  After waiting a hour for the sugars to metabolize, I was taken into the chilly exam room.  I was placed in position and propped up with various foam wedges and warm towels....Lets just say it took minutes for me to fall asleep!  Before I knew it the scan was over!  This time around, everything seemed to go much faster.  Maybe I'm an "old pro"by now?!!  Afterwards, I had a bagel sandwich and made it back to the hotel where I slept for most of the day.

Let's here some GOOD news!

Today, Nate and I woke up very early again.  My Doctors appointment wasn't until 8am but, I really wanted to grab a cup of blue bottle coffee first.  It is The. Best. Coffee. The End.

We arrived at UCSF Helen Diller comprehensive cancer center 10 minutes before my appointment.  I filled out all of the paperwork and we waited.  At 9:40, we were taken back into the room.  After some time the resident came in to conduct the initial exam and assessment.  

The Resident pulled up my PET CT images and I immediately saw two areas that were 'glowing'.  My heart sank.  From where I was sitting, I could read what he was typing.... My heart sank again.  Nate saw my face and decided to get up from where he was sitting and stand in-between me and the Resident!  He has said from the beginning that it doesn't matter what anyone else says except for Dr. O'Donnell - and he is right.  There he stood...and thought he was so funny!!  He always knows how to make me laugh!

After more waiting time, Dr. O'Donnell came in.  He examined my enlarged lymph node, my leg, and my range of motion.  He examined the area where the tumor was removed and all of a sudden, he touched an area that was very, very tender.   I never realized this.  He said, "This feels very full."  He and then sat down and started typing. 

After quite some time of him reviewing the last three months of my scans and comparing them to my PET CT scans, he then turned to talk with us. 

Assessment and Plan

Good news, he told me that the Fluid collection has shrunk!!  I am not in as much pain as I have been.  I haven't been pushing it too hard in the gym either, and I've noticed that it doesn't hurt as much.  He told me that constantly in the last 3 scans that I have had, they have all been consistent in noting that the size has shrunk!!!  Yayyyyyy!!  It was 7.4 cm (August 21st), 6.9 cm (September 30), 5.5 cm (October 5), and 3.9 cm (October 27).

More good news... Dr. O'Donnell told me that most likely my lymph node (1.6 cm)  is not cancer as it didn't glow in the PET CT scan.  Personally, I have noticed that it has shrunk.  Dr.O'Donnell told me that I also have enlarged lymph nodes in my chest (armpit area).  He will follow-up with these in a follow-up CT.

He told me that there is a ring of enhancement around the "Popliteal cystic fluid collection/mass".  In the past, the Sarcoma Board has thought that this area; the cyst and the tissue around it, were consistent with a Seroma.  He told me that when I had a tumor last year, the entire area lit-up with the radioactive sugar injection.  Visually, It was the shape of a potato.  However, this time the PET CT lit-up an area in the shape of a doughnut - Just the outer ring.  The cyst in the middle did not - it was still dark.  Because of these differences he is not certain that it is Sarcoma again!!!!  Last year, when I got the PET CT scan of my tumor the glow could be rated at a 1.5, however this area has now given a glow at 4.2 (much brighter).  He told me that he will be bringing these images to the Sarcoma Board on November 14th for further review.

Dr. O'Donnell told me that the second spot that glowed from the PET CT was the area in my gluteus major muscle (my butt) - more specifically my trochanteric brusa.  He told me that this could just be inflammation!!!  He's concerned with the fact that it glowed on the PET CT scan images. However, he wants the Tumor Board to review this as well.  Before the Tumor Board meets again, O'Donnell wants me to get another Pelvic MRI.  He wants it done at University Imaging.  This is the same place that I had the Pelvic MRI done last year.  They are also the place where I had my most recent MRI scan where O'Donnell raved about the quality!

He told me that I have a stable lung nodule.  It is abnormal (not sure what that means), but it is still 4mm.  

More Scans

O'Donnell told me that he would like me to "Take the Holidays off" from scans.  He wants me to get another Chest CT and MRI at the end of January.  He told me that he wants both of these scans done at UCSF.  He requested the MRI be completed on a 3-T (high-powered machine) again.  

Keep Praying!

O'Donnell told me that he would call me after the Tumor Board meets on November 14th. When I get back home, I will rush to get the Pelvic MRI completed and overnight the images to O'Donnell so that he may review them and bring them to the Tumor Board.

Thank you SO much for your support.  I think Nate and I were hoping for more conclusive result but, Im very thankful for how through Dr. O'Donnell is!!!  I really happy the cyst is shrinking and I have positive hopes for what the future brings!!  

Thanks for reading!

Disappointing MRI Results...

Good Morning and Happy Monday!

I hope you had a great weekend!  I got to watch my sister's daughter, Brooklyn, and she wore me out!!  We danced, decorated halloween cookies, went to the park to play, and had a wonderful time!  I love her kids so much, it's hard to imagine the love I'll have when I have my own!

I had my "High powered" MRI completed in Sacramento on September 30th.  The next day, Nate and I went out of town for my State Farm Agency convention.  The convention is held in Las Vegas every three years.  There were 12,000 Agents and guests in attendance!!  State Farm did a really good job showing the financial strength of state farm and getting us really excited for what the future has in store! It was a much needed distraction because I was in Vegas it took away from the urge for me to want to call the radiologists EVERYDAY for results!!

Nate and I in Vegas

As a patient, the Radiologist's report is not available until a week after I have my scan!  They set this rule because they want your Doctor to be able to see the report first, look at the images for themselves and then call you FIRST with any news; good or bad.  Dr. O'Donnell is VERY thorough - which a lot of time will lengthen the turn around time for me to get the results.  Even though they get the Radiologist findings within the time frame, they still ask me to overnight the images.  He then will review the images himself.  He will also have his Radiologists review my images and compare them to my previous scans.  THEN, he will call me.

I did call UCSF bright and early on Monday morning after returning from Las Vegas, October 6th!!  I called Dr. O'Donnell but, they don't get in until after 8am, so I sent them an e-mail.  I have found that e-mail works great as an alternative communication method and the staff at UCSF is VERY good at getting back to me; either with a phone call or a return e-mail.

Nurse Carrol called me back and told me that they had received the report but that they wanted to see the scans (no surprise here).  She wouldn't tell me what the report said - only that I needed to overnight the scans ASAP.  Her not telling me what is on the report is a red flag to me (Nurses can't tell you anything bad - only a Doctor can).  So... since it had been a week, I called the scan facility and asked them to fax a copy of my report (radiologist findings) to my office.  When I got into the office, the report was waiting for me.  I wasn't happy with what I read... (I paraphrased the findings below)

1. Abnormal T2 signal with enhancement... concerning for Sarcoma.
2. Large Seroma with irregular peripheral enhancement.  Inflammatory/infectious process must be entertained but this area may be involved in the Sarcoma.
3. Abnormal signal with linear enhancement adjacent to the inflammatory Seroma.

Ummm... Did I read SARCOMA???!!!  Clearly a typo - right!!?  We knew about the Seroma (pocket of fluid) for a while but, Sarcoma?  Let's just say I agreed with Nurse Carrol - that the Dr. needed to see my images right away!!

I overnighted the images and then called the very next morning just to confirm hat they received the images.  Nurse Carrol told me that they have the images and they are getting them uploaded and that as soon as Dr. O'Donnell reviews them that she would call.  Since Ive been having a lot of pain in my leg (upper thigh, knee, and foot) she then suggested that I go to the ER to get checked for a possible blood clot.  I never like going to get checked for a blood clot because it takes forever and I was pretty sure that I didn't have one (Not the same type of pain)!!  But, I went anyways.

At least I come prepared!!

Nurse Carrol called the next afternoon.  She told me that I have the Seroma (that we all knew about).  She told me that the Seroma has moved!  It was in my incision area - on the inside part of my right knee area.  However, now it has moved the the right side of my back right knee area.  She told me that the Seroma relocating could be causing my pain because it could be pushed-up on a nerve or two.  She told me that Dr. O'Donnell said that they tissue around my Seroma is changing but, that they are not she what it is changing to.  She told me that it could be inflammation, infection, scar tissue, or Cancer.  She told me that Dr. O'Donnell doesn't seemed too concerned since I already have a PET CT scheduled for October 27th and they will wait to see what it says.  She asked me not to over stress my knee area with working out too much.

Later on in the afternoon, Nurse Carol called back and told me that they received the results from my ultrasound for the blood clot.  She seemed really concerned.  She told me that Dr. O'Donnell asked her to call me back.  She told me that the ultrasound identified a big enlarged lymph node in my right groin area.  I asked her if I could feel it?  Because I could feel something like a jelly bean in that area that has been causing pain down my leg.  She told me that when it gets to be the size it is now, that YES I could feel it.  She told me that O'Donnell was concerned with the enlarged lymph node.  She told me, "We will be monitoring your PET scan results very closely now."

I wish she hadn't said that last statement.  I think they would have watched it closely regardless, right?  The last statement had me worried.  So, of course I Googled it!  Im pretty sure Google should be disabled for Cancer patients - seriously!!

In researching the new finding of a enlarged lymph node, I found results for infection and cancer.  The good news is that only 10% of the time my cancer spreads to the lymph nodes.  As far as Cancer goes, that is NOT very much.  It is also highly unlikely because of how 'low grade' my cancer was.  At this point I sure am hoping that is it NOTHING!!!  Or just inflammation (that would be nice too).

I know this goes without asking but please pray for my upcoming scan next Monday on October 27th!  Pray that no evidence of disease is found.  Pray that I get to move forward from this chapter in my life!

My-my-my-my-SEROMA!

Good Morning!  I hope you are having a good day! Nate grandparents are in town visiting us and we've had a blast celebrating Grandpa's birthday!

I wanted to take a minute to update you since my last series of posts.  This is an update from September and the follow-ups from my regularly scheduled MRI.

Too many cases, not enough time!

After completely bugging O'Donnel's staff with my phone calls, they called me back!  Unfortunately, at the Sarcoma Board on Sept 12th, they were set to discuss three cases and were only able to review one.... My case was not the one they reviewed.

Can you imagine having a case so complex (Im assuming), that it takes some of the best doctors, radiologists, surgeons, over three hours to discuss!?  I sure hope that patient is receiving the care they need.  Nurse Carrol told me that they would discuss my case in two weeks at the next Sarcoma board meeting on September 26th.

Results from the Sarcoma Board on September 26th

Dr. O'Donnell was able to present my scans at the Sarcoma Board on September 26th!!  He called me to tell me that the Radiologists were able to review my scans and told me that I have a Seroma that is getting bigger and that the area around the Seroma appears to be inflamed, scar tissue, or infection.

He mentioned nothing about the additional spot on my lung.

He was concerned that I am having more and more pain in my leg.  He ordered another MRI on my right leg!  This is the scone MRI in three weeks!  He told me that I can get the MRI done outside of UCSF as long as I am able to request the high powered machine (T3). He also requested that the MRI technician focus in only on my right knee area - he doesn't need to see two legs in the images - he wants the machines entire strength to give the clearest images possible of whats causing the pain in my right knee.

Thank you for reading!

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!