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!!!!!!!!!