Monday, November 29, 2010

Plastic Surgeon

We saw the Plastic Surgeon at Huntsman last Tuesday.  Sorry it has taken me so long to write about it.  There are lots of details for those who are interested.  Let's just say that it wasn't what we were expecting when we went up there!

We met with Dr. Agarwol's assistant first.  She took one look at Morgan and asked her if she was going to have was great, she couldn't even tell Morgan was 2/3rds through and wearing a wig!!  Once she found out that Morgan was having radiation after her January surgery, she said "well, radiation complicates reconstruction." (What is that supposed to mean?....not a good start to the meeting!!)

The (latest) plan is that Morgan will have a new PET Scan after chemo to see if everything responded the way it was supposed to.  Followed by a lumpectomy on January 14th.  That will take out the margins around the original tumor and include a sentinal node biopsy.  This is when they inject a type of radioactive dye in the breast to see where the fluids drain out first...under the armpit or into the nodes under the breast bone.  Usually 95% of the fluid goes out the armpit (which is why it is strange her inner nodes lit up and her armpit nodes did not.)  They may take out a node or two in the armpit while she is in there.  This will be an in and out procedure and two weeks later she can begin the six weeks of radiation.  She shouldn't have too many (if any) side affects of the radiation and her spring months will be as normal for her as possible.  Then in May, she will undergo a bi-lateral mastectomy followed by reconstruction a couple months later.  We need to make a decision on what kind of reconstruction to do, so that is why we had this meeting.

I thought it would be as simple as tissue expanders followed by implants...but that isn't one of our options.  They want to use Morgan's own tissue which would have its own blood they said "radiation plus implant is ALWAYS problematic."

1st option: Take fat and skin out of Morgan's stomach to fill in her radiated breast.  This would include needing to remove a blood vessel and reattach it to a blood vessel in her chest.  The Dr. checked and she doesn't have enough "fat" for a tummy tuck so this option is not available.

2nd option:  Same as above, except use fat and skin from her upper rear end.  This is an 8 hour surgery and would have to be done twice a couple months apart. 

3rd option:  Use the Latissimus muscle from Morgan's back.  It would stay attached to its own blood supply which would make it less complicated.  They would just wrap it around the front from the back.  (weird, I know....I hadn't heard of this before either!) It is called Latissimus Dorsi Flap if you want to learn more.

As for now, all of us (the doctors, parents, etc.) are going to meet at Huntsman on Wednesday for a final meeting before the work out all the details.  There is SO much to this entire process!!! When you add up all the doctors, all the visits, all of the tests, every procedure, and all of the insurance and financal's like a full time job!

Many of you ask how Morgan is doing...she is handling all of this as well as can be expected.  She has felt weak and very it is all catching up with her.  I am amazed at her every day, sometimes I forget she is sick at all.  Only two more chemo treatments, tomorrow and the tuesday before Christmas.  Dr. Beck told us it would be like pregnancy and the last part would seem a lot slower than the beginning!

Don't forget to wear your pink tomorrow!!!  Thanks for all of your support...

P.S. I hear the fun run will be on December 11th now....more details are coming!!!

Jazz vs Kings

Our neighbor Eric gave Morgan and me two tickets to the Jazz vs. Sacramento Kings game last Monday.  We had so much fun!  We laughed and talked and people-watched....crazy night!

We made it on the jumbo tron a couple of times and Morgan got a jersey #9 with Watson on the back....they have a Watson on the team (#11) but his jersey isn't available...

Thanks Eric for lots of fun and some great memories!

Wednesday, November 17, 2010

Radiation Oncologist

I didn't even know that there was any such person as a Radiation Oncologist, but that is who we went to visit today.  We met an amazing lady who is just so nice and easy to talk to. When Morgan feels comfortable and trusts the doctor, that makes all of the procedures that much easier to cope with.  She told us that she has a daughter who is 16 and that our surgeon, Dr. Neumayer and breast oncologist, Dr. Beck, do also.  I have asked each one of them what they would do if it were their daughter because I have discovered that it would be MUCH easier to be doing this if it were my disease, but making decisions and watching my baby go through it is much more difficult. She agreed and said that we had created a perfect medical team (accidentally) who would be making decisions and working just as if Morgan were their own daughter.  She also let us know that Morgan is very popular in their world and it was nice to finally put a face to the name.  Medical Specialists are discussing her case and speculating on how to best treat her cancer.....she told us that she often wakes up at 3 in the morning and thinks about Morgan's case and what is the best thing to do. 

Dr. Avizonis told us about some different radiation options and informed us about how it all works.  She explained that radiation is just like laying in a tanning bed for 15 minutes a day.  They direct the radiation beams to hit the spots they want to kill without having the beam go through another area they don't (like her lungs).  After 30 sessions (M-F for 6 weeks) Morgan will be finished and have a bit of a sunburn on her chest.

As soon as Morgan is finished with her chemotherapy on December 21st, she will have another PET scan done to see if the chemotherapy killed everything it needed to.  We went the chemo route first because it is systemic which means that it flows through her blood into every part of her body and kills anything which is dividing and growing at a fast rate (which is why you lose your hair).  Hopefully it did its job and killed any random cancer cells which may have escaped from the original tumor.  We already know it made its way into two of her nodes because of the way they lit up on the PET scan.  We are REALLY hoping that it did its job and that there are no random cells growing themselves into another tumor somewhere else in her body.  That would definitely be a VERY bad thing.....Metastatic Breast Cancer (at this time) has no cure.

The radiation is a more specific type of localized treatment and is particularly important to reach the lymph nodes in the center of Morgan's chest behind her breast bone.  It is so difficult to get to them, it is a much better solution just hit them with a ton of radiation and kill them.  They won't physically be removed...ever (so no big scars or saws will be needed).

All of this information is going in our brains to be processed along with all of the surgical options we discussed last week.  On Tuesday we have another appointment with the Plastic Surgeon to pick up a little more.  When we put all of it together, hopefully we can make an informed decision on which surgery to do in January......Lumpectomy or Bi-lateral Mastectomy....hmmmmmm?!?!?!?!?  Trust me, there are several pros and cons for each.

Thanks again for the continued love and support.  We are being fed very well by women in the ward and members of Boyd's family.  Members of mine and Johnny's families are driving down to help out with the medical visits and running the house. Our next door neighbor brought over two tickets to the Jazz Game for me and Morgan to go to next week!!!! 

We can feel the overwhelming outpourring of love and service.  This is what life should be about, helping out when and where we can, thinking more of others than we do ourselves, and paying life forward.  You never know where your own life will lead you, I hope you can miss the road we are on, but life isn't meant to be spent alone trying to do everything by ourselves.  It has been a humbling experience for me to realize this.  I still have a difficult time asking, but I very much appreciate what is come in return. Thank you truly....

I would love to tell you exactly what the treatment plan is, but there are so many variables to Morgan's case that just don't fit anyone else around.  Each aspect of this has been seen before....just not all in the same person....and just not in someone who is 16!!!!

Still trying to figure out some fundraising options, how to get Morgan's story out to those who can bring the right kind of attention to it...any suggestions or help with personal connections would be very much appreciated!!!

Thursday, November 11, 2010

Braces Off!!!

Morgan got her braces off this morning!  She looks great!  She actually said to Nancy and me...."I wish you guys could lick my teeth and feel how good they feel!"  She feels like a new woman!!!  She ate her first whole apple, right off the core! She hasn't done that for over 2 1/2 years.  She already has the Whitening Strips on her teeth to make them perfect!

Today was a big day.  Johnny and Crystal came down from Rexburg to meet with us up at Huntsman.  We had an appointment to talk to the surgeon, Dr. Neumayer while Morgan met with the Social Worker and Genetic Counselor.  We discussed all of our surgical options, the pros and cons of each.  There are a lot of unique characteristics with Morgan and her cancer, duh! But when you put a 16 year old girl with triple negative breast cancer and a P53 mutation....there are many things to process and work through before making these decisions.  We will keep you up to date as things happen, but as of right now, we don't really have the answers....yet.

Next week we meet with the Radiological Oncologist, then the next week with the Plastic Surgeon.  On December 1st we will all come together again and make some final decisions.  So...just like all of you, WE don't know much about what is going to happen yet either!! :)

With my P53 test being negative, they are automatically testing Johnny for the mutation.  They figure he has about .005% chance of being positive, so once again, Morgan may just be a random fluke.  His family doesn't really need to worry about having the gene or testing for it.  His family history doesn't quite fit the usual mold.  As for my family, we don't really need to worry about the P53 gene, (YAY!) but there will be further genetic testing in the future.  My cousins from Florida will start because of their medical family history, and then depending on the outcome, the testing will bounce back to my family.  We will keep you updated as information becomes available.  But the one thing that is stressed the most is for ALL women to get their mammograms each and every year!  If you have any relatives who have passed away or survived from breast cancer, you may want to even start before the age of 40. 

I had my first mammogram yesterday...I had been warned that it would be uncomfortable, but it really was a tight squeeze! (but as I watch Morgan's journey, I don't really mind a little pain!)  They called today and left a message for me to call for a follow up....great news!!!!  Oh well, nothing surprises me now!
New hair....old braces!!! She'll have better pictures tomorrow!  Love ya!

Wednesday, November 10, 2010

Chemo #4....2/3rds of the way!!!

Kylee (Morgan's big sis), Nancy (my big sis), and I went with Morgan for this round of chemo.  It went really fast since she DID NOT have a reaction!!! Yay!! I am sure it is because we had her doped up on so much steroids and benadryl.  I am sure her body is getting used to it as well.  But, I guess that isn't the whole truth.....she kind of became anxious and antsy after the benadryl....she couldn't hold still and had to move around a lot.  It was fun to watch, but she sure looked good with her new hair on.

Found out the bag of Cytoxin runs around $120, but the bag of Taxotere, (the one that almost killed her) costs ......$15,658!!!!!!! Her bill at Utah Cancer Specialists is up to just over $78,000!!! Thankfully she is double insured!

Her G'ma Watson made her an awesome cuddly blanket to keep her warm during her treatments.  All of the other patients, and even the nurse, is jealous and want to take it home.  Morgan is doing a great job pulling through all of this.  She takes so many different medications, it confuses me all the time.  Of course she doesn't want to most of the time which reminds me of when she was little and would spit the liquid syrup back out at me right in the face!

Today we went back into the office to get her Neulasta shot.  She is such a pro I didn't even go back in the room with her this time...  Nancy and I stayed in the waiting room talking to a lady who had just come in for her first appointment.  I must say that I felt really strange being the more "experienced" one who was consoling the new patient. As I told her that she would be okay and could make it through gave me a strange feeling of calm and peace, because I knew that I wasn't lying and trying to make her feel better.  Yay for us!  Just the few things Morgan was able to say to her could make a huge impact on her and give her a little relief at this crazy time. She has the ability to influence and change the world. It is a good feeling!!

P.S. I got my P53 test results back today....I am negative!  It is both good and bad news to me.  I am relieved to not have to worry about Kylee, Riley, and my siblings and their families.  But, I think it would have helped Morgan to maybe have someone to fight with.

Morgan's Back!!!!

If you see Morgan with a full head of gorgeous'll never remember what she looked like bald.  We found a wig on Tuesday that looks exactly like her real hair.  She came out like a new girl!  I REALLY wanted to post a picture to go with this but.....since she gets her braces off on Thursday she wants to wait so you can see the NEW & IMPROVED version of Morgan.....but I love her just the way she is!  We're wondering if maybe we should get a clip-in white section to replace her "Angel Kiss"....maybe next week!