Still In The Hospital…

Still in the Hospital as of today, Sunday May 30th.  Yesterday was a tiring day for Kelly.  It started Friday afternoon after we met with a new Doctor,(Dr. Andrews).  He is a Neurologist, Neurosurgeon and he is also specialized in radio surgery, gamma knife, etc which may be treatment options for Kelly’s brain at some point in the future.  His recommendation to us was to get a Ommaya Reservoir (Chemo Port in the brain) installed as soon as possible. This port is where the new treatment will be given from. The port is where the chemo will be injected to the brain and spinal fluids.   I agreed that this should be done quickly so she could recover and get started on the chemo ASAP.  Dr. Andrews mentioned that in order for him to do the procedure, we would have to get a MRI of the entire brain ASAP to see if their was any new obstructions or issues that would stop us from doing the surgery.  Dr Andrews then ordered a MRI of her head that was suppose to take place at 8pm…unfortunately Kelly did not get taken down until after 11pm because of issues the MRI machine was having.  Due to the late MRI, Kelly was not up back in the room till after midnight.  Then she needed to have a special head wash that would be used as a disinfectant for her head to help prevent infection during the procedure.  Most of the night nurses were in and out checking vitals etc so morning came quickly with little sleep for both Kelly and I. The hospital staff came to the room a little before 7:30am to take her down to the OR.  When we got to the OR we met with the anesthesiologist (Dr. Sullivan) and Dr. Andrews to go over the surgery.  After chatting with Dr. Sullivan, we found out he is actually best friends with our other surgeon who preformed Kelly’s mastectomy (Dr. Walsh).  This was weird because they even look a lot a like lol.  I guess Dr Walsh was even in Dr Sullivan's wedding.   Anyway, Kelly then got her IV courage as they like to call it and was off. 

She was in surgery for about an hour.  Dr Andrews came out the waiting room, got me and whisked me into the recovery room.  Normally guests are not allowed in but being that is was a Saturday and no other patients where there they said it was fine.  Dr Andrews and I had a conversation at that point…he informed me that the procedure went well and that it would take about 10 days before the stitches could come, etc.  He then told me some good news…he believes from what he could see on the MRI that Kelly’s two tumors had decreased in size a good amount, almost to where they were hard to see on the MRI (Yay).  He was not able to provide us any new news about the Meningi involvement though, which is what is the bigger issue for Kelly.  Dr. Andrews let me know that they did pull out some spinal/brain fluid during the procedure which will be sent out for testing which may determine how effective the radiation was against the tumor cells in the brain and in the Meningi. 

One of Dr Scates (our oncologist) partners from South Bay Oncology visited with us this morning in regards to what we need to do next for Kelly.  The Oncologist had talked with Dr Scates and agreed that we should wait till Monday to receive her first dose of spinal fluid chemo which would give her a full day to heal from the surgery.  As of right now, we are thinking that we may be going home sometime on Monday afternoon, but this is not a for sure thing…It will mostly depend on how Kelly does after her first chemo treatment.   We are anxious to get home but at the same time because of Kelly’s limited mobility we understand the hospital is probably the best place to be right now.    The nurses are asking that she does not have any visitors at this time due to the fact that she has had almost no rest in the last few days and she gets tired quickly from the pain meds.

The other news we heard is that by Kelly taking the spinal treatments, she will not be excluded from the trial drug she was set to begin called PARP Inhibitor.  This type of treatment is given with two chemo therapies, the major one being Carboplatin.  The initial results from the first trial of this drug was very successful and promising, so we are hoping they drug company will release this drug ASAP and Kelly can begin on that as well. 

Thank you all for checking the blog for the latest on Kelly as I know so many of you are worried about how she is doing.  I will continue to try and keep this blog as current as I can.  Hopefully, Kelly can start writing again soon, when she starts to feel a bit better.  She misses talking and seeing everyone…she loves all of you and appreciates all the support and kind words you continue to bring her.

God bless, Manny

Blog from Manny

Hi Everyone -  This is actually Manny writing this post because Kelly is very tired and under lots of anxiety, stress and the like at this time.  I wanted to give everyone the latest update on our situation as it’s impossible to answer every call and text.  I think Verizon is going to be very happy with us this month, hopefully Kelly has us set up with unlimited minutes and texts lol.  Well...I will try to make this short and sweet as I am not nearly as good of a blogger as my lovely wife.  

It started on Monday afternoon when our primary physician recommended that we go to the ER ASAP because Kelly was experiencing a high heart rate (125-130) and she was loosing almost all function of her lower half, walking was becoming impossible.  So we drove up to O'Connor hospital at 10:00pm on Monday night.  Much to our surprise the ER was crazy packed...more then 50 people ahead of us.  Kelly got frightened at this point and began to get very upset (caused by steroids mostly).  Well my mom (Adela) was somehow able to talk the nurses desk into getting to Kelly right away.  By 11:00pm we were in a ER Room.  Unfortunately, that was just the beginning as they had to ran a multitude of tests on poor little Kelly.  They finally decided to admit her at 6:30am..what a long night. 

Since Monday we have been in the Hospital running more tests.  The Dr's could not find anything wrong so they figured to truly know what was happening they would need to perform a lumbar puncture(spinal tap) to get fluid from the spine to check for cancer.  That was done on Wednesday and as of right now (Friday afternoon) we don't have the final official pathology report.  However early reports are showing about 50% of the cells in the spinal fluid are showing suspicious stuff...which they believe is the breast cancer cells attacking the good cells.  Our Dr (Skates) has told us we basically only have one option for treatment, which is a special type of chemo therapy that is injected directly into the spinal fluid.  This can be done two ways..first is by way of a spinal tap in which Kelly would have to come to the hospital each and every time...not a good way to go being that is so painful.  The second option is we have  port put in just under the scalp of her head. This procedure will need to be done by a neurosurgeon here at O'Connor.  This option will make things much easier in the long run for Kelly's future treatments so I think this is what we are leaning towards.  The neurologist on staff here is suppose to meet with us sometime this afternoon to talk about the procedure.  This new information does leave us in a sort of dilemma because Kelly was scheduled to start a trial version of a drug called PARP inhibitor next week, but our Doc believes by doing the spinal treatments she may not be eligible for the trial.   Hopefully this is not the case but it might very well be.  I wish I had better news but it just seems like we keep getting hit with stuff we don't want to hear.  Hopefully, god willing, Kelly will get the procedure done soon and get the treatment she needs and be able to get home.  The tricky part will be getting the house set up well enough so that she can get around easily being that she cannot walk.  We have a home care case manager looking into getting us special home supplies to make the transition easier. 

Well everyone, now is the time we need all your positive energy and prayers the most.  We cannot give up this fight because I know Kelly is not giving up!  She is the strongest women I think most all of us have ever met and she is a inspiration to everyone.  She is my wife, my hero ,my everything and I will do all I can in my power to get her back to health.  Thank you for all the support you have given her over the past year...this blog has been one of the big reasons she has done so well through all of this so I thank you for reading and staying current on our situation. 

We love you all!  God Bless.  Manny Freitas

Also here are some awesome things Mark Silva has done for Kelly. His new tattoo with her name also a new addition to his paddle board. Awesome!

Also here is a picture of Kelly in the hospital.

Tough Times…day by day

Note: please excuse the typos & grammar issues. 

I am about to have a physical therapy session with Manny and thought I would write a quick hello to you all.

My body is slowly getting worse and we are looking into at home care to help with all the stuff I need because it’s been Manny doing all this stuff for me and that is hard for him. I am constantly working through this in my mind and body but the steroids are very difficult and also make you very depressed even crazy so it’s a tough battle. I will get through.

So if you are not hearing from me or I am not totally “there” please understand it’s the steroids. 

Thank you for your continued support we truly appreciate it and need it.

Smile.

Kelly & Manny Freitas

Happy Anniversary to US! XOXO

Today marks one year since Manny and I said our vows. It is such a time to appreciate the love we have for each other, which we have. In this circumstance we truly see how much we love each other. However, it coming bittersweet, because my energy level has shot way down. My legs are literally giving up right now and I am I having a very hard time walking and he has to help me up walk and such. It could be so many things. I am thinking mostly steroids, but we will be calling doctors of course to let them know and possibly get someone here to start working with me on rebuilding muscle.

More beautiful pictures from that day taken by Jill Johnson Photography

It's annoying for me because I am not the person to sit and not move but right now my body is telling me- well forcing me to. I have fallen a couple of times, which is not shocking for me( I am klutz) it's the reason I am falling. Lack of strength rather than coordination. So just another road block I must get through. It's a hard one.

We took a little getaway, thanks to a dear family friend, to a place called Dolphin Bay in Shell Beach CA. It was well deserved for all and needed that down time to not think and just relax. Golf, Spa treatments and rest by poolside. ahhhh. Enjoyable to say the least

We also did the traditional 1 year frozen cake top tasting for the anniversary. We couldn’t remember the cake flavor, it was chocolate. Surprisingly it was very moist and not as bad as we expected it to be. We’ll thank Annie Goularte for that, supreme cake maker! ; )

As you can see, I have also lost my hair again due to the brain radiation, which was  fine this time around. Easier the second time around for sure. Experience is key.

Thanks for reading what we have been up to. Enjoy your day!

Smile!

Kelly & Manny Freitas

Trying to find peace

We sit at home in a quiet home, our home has been a bustling grand central station since yesterday. I have just gone from Minor League to Major League, I have to be that much stronger work that much harder to get through this.

From the begining:
My first Doxil I went through with flying colors, felt so fine that I had house guests and a BBQ with the family in my house. the only thing I did notice was a bit of back/spine pain. nothing too major.
My second Doxil was April 7th was feeling very tired by thursday and a complete wreck on Friday the 9th at first I chalked it to chemo side effects. Until they got so back we had to call the on call Doctor on Saturday evening, Manny even almost took me to the ER. I had every sypmtom in the book. By Monday spoke on the phone with my doctor phoned in some prescriptions then had another appt on Wed. They started to think I had spinal meninghitis which could be deadly. Tested my blood and the bacterial version was ruled out. But even still this wed I still had symptoms. So they were leaning to viral meninghitis. So they sent me to the ER for a spinal tap(lumbard puncture) but wanted me to have an MRI to brain to rule out possible brain tumors. Which I secretly felt could be an option, how could I be as sick as I was/am and Manny not get a single thing. So off we went to the ER at 1pm yesterday, they did what they do as I laid in a private room obviously meant for kids. Finally rolled me to the MRI department for a brain scan and by 6pm found out I had brain lesions (2) so no need for a spinal tap the tumor was causing most everything. Neck/Back pain,headaches, high fevers, vomitting/nausea, dizziness, loss of appetite, constant anxiousness, to name a few. Great! Checked out by 7pm home by 8 or so.

This morning I received a follow up call from my oncologists office to give me more details like my meningi's are also swollen, the lining of the brain is also part of the situation. I need full brain radiation ASAP(lined up today start tomorrow) Stopping chemo and with the little success I have had and the fact that it's in my brain (and quote) I have "a few months" WTF... that's the scary part how do deal with that. Part of me wants to say screw the dr's the hospitals and fly somewhere anywhere and love my hubby. Of course the other part of me wants to fight for my husband, he doesn't deserve this, with our 1 year anniversary just around the corner. Neither does my family, I need to do this for them. Yes I want to survive, ofcourse I want to grow old with my husband watch my nephews and neice grow. At this point I wont even be selfish about having babies for us. I just want to live mostly for them but for me too, I am not sure I am strong enough to realize "a few months" Who can? How do you really weigh it?
Well part of me fighting is because if I didn't I would be dealing with a lot more painful symptoms. Not sure I can handle much more pain, to my body and my soul. I know I need to be strong but for the first time ever it's not coming naturally...Fear has really been my main feeling, even I don't know what to say. Most the people who I talk to feel that way, don't worry I do to.

As of right now I am feeling like it's not real and have a ray of hope in radiation.

Thank you for all your prayers, thoughts, hugs, kisses, smiles, tears I feel so special to be as cared for/loved/or liked enough to have so many people on my side.

SMILE!
Kelly Freitas

Good Bye Sushi

I start chemo tomorrow morning so that means good bye to sushi, hello hand sanitizer!

I will be back to carrying hand sanitizer with me 24/7, drinking lots of water and eating crackers. I am currently looking online for another wig, just to mix things up. Maybe a long one just like my hair used to be. Although, when I had no hair I always felt much more comfortable wearing my headwraps...especially in the hot weather.

I spent the afternoon with my sister and mother enjoying my last sushi lunch until chemo is over. I was supposed to clean my house a bit and organize my loft, that can wait.

Wish me luck and hope for least amount of side effects. Hand Foot Syndrome does not sound fun but then again neither do the other side effects on the front & back 8.5 x 11 sheet of paper.

Until Next time

SMILE!
Kelly Freitas

The Plan

Well the new plan anyways, not really the plan I envisioned but a plan nonetheless. The extended plan to my cancer free life. I am doing chemotherapy first. (phew) The last thing I wanted to do is have surgery again especially one that cuts open my breast plate. yucky! There is a new drug that is currently being FDA approved that coupled with chemo has shown significant improvement on doing away with Triple Negative breast cancer. I am a candidate for trial use of this drug and I will be doing it. It's 2 types of chemo drugs plus this new drug- problem is, it is not for use for another month or so. So in the meantime my doctors do not want to wait and I will be doing another form of chemo to attack the cancer, but not remove me from the trial. Now I wait to get my chemo schedule I am assuming I will know next week when I begin.

I am not scared going into this chemo this time around, because I know what to expect. However some of the stuff I am expecting is still a dark cloud over my head. Hair loss (just when is was coming back), metallic taste, fatigue, nausea, yucky all those things(plus some) back again. But the return in investment seems much better- my life, can't beat that.

It's a strange thing this disease, from the outside I look healthy as ever, maybe a bit of weight gain but healthy. My skin and nails are the healthiest they have ever been. I have rosy cheeks decent energy it's been forever since I have even had a cold. But then there is cancer inside me trying so hard to take over. Most people see me and tell me how good I look and that makes them feel better. It's concept no one, including myself, understands she looks fine so she MUST be doing well. I am hoping and have a lot of confidence these new drugs will have my inside match my outside appearance. That will be a great day.

I am impatiently waiting for sunny Summer weather to arrive, until then I am savoring what fabulous jewels Spring brings. Beautiful white tulips on my coffee table, the rainy days that have my sweats and hot coffee screaming my name, my grass so green my husband enjoys touting that "we have the greenest grass in the neighborhood" so proud of his hard work which always makes me realize the grass is greener in my back yard. My white dog who always seems to find the one mud puddle we have and plays in it the day after we give her a bath. That always makes me laugh and bit irritated all the same time.

Until next time!

SMILE!
Kelly Freitas