Saturday, December 21, 2013

Christmas Card 2013

Wow, what a year it has been. I think it's been a few years since I've written a Christmas letter. Although I believe most of you we are sending this letter to already know all the we have been through the past few years.

For 7 weeks in the summer of 2012, our whole family, including the dog we got in January traveled the United States with everyone picking some destinations that they really wanted to see. We went to Yellowstone, Mount Rushmore/Crazy Horse, Memphis, New Orleans, Disney World, Gator Park, Key West, the Jersey Shore, NYC, Philly, Washington DC. and visited with several friends and many family members in various states along the way. We ended to going to 30 states in the 7 weeks. Although it was 6 of us and a dog cooped up in a motorhome, we truly had an amazing time and have many fond memories! We still have the motorhome and have taken it on several weekend trips and to the local beach. Along the trip our motorhome was affectionately named the "brass monkey" by a friend's son.

When school started in 2012, Faith started her Senior year in high school, she continued with competitive cheer at California Allstars and traveled with her mom to Las Vegas and Dallas, bringing her whole family to Palm Springs to watch her compete in cheer competitions, where most of the time they placed 1st and were grand champions. She cheered the season before, but had to step down with all that was going on at home with surgeries being scheduled around her competitions dates.

Early on in 2013, Sean started another business as well as continuing several others. On June 14, 2013, Faith graduated from high school. This was quite and accomplishment and we were all very proud of her, not many kids go through their last two years of high school with a parent battling cancer and all the help she had to put into our family.

At the end of June, Melanie's sister Julie passed out at home, was rushed to the hospital, and ended up passing away on the 4th of July as she was unconcious she went too long with out oxygen. Melanie spent 2 weeks out there at the beginning of summer. All of this ended up being due to her heart and was a complete fluke thing. Another reminder that life is short and that we need to live it to the fullest. Faith and Melanie attended her funeral in mid July. This was a very hard time for our family and Julie will forever be missed and thought of everytime fireworks go off.

Melanie has been continuously getting brain scans every 3 months and for the first year they all came back clean, with no changes, or nothing visible on the MRI. However in June 2013, the oncologist thought it looked like there was about a 10% change/growth. We knew another surgery was immanent, as the "natural" treatments we had been doing we not helping, nor was the vaccine.

In September 2013, we decided to have another surgery and after a great deal of research, meeting with doctors, we decided to move from UCLA to Cedar Sinai Hospital and to have another surgery with Dr. Black, a world famous brain surgeon. The surgery was successful and Melanie recovered from the surgery with the help of her family and her mom coming down to help as she did for each surgery. Since the tumor had grown so much about 20% by Dr. Black and the tumor board's findings, it was advised for Melanie to start chemotherapy. She started on December 13th taking Temodar, a pill form of chemo, for 5 days on and 23 days off. This will continue for approximately a year and the doctors think this will help postpone another surgery.

Faith just completed her first semester of college at Palomar, a local community college while Josh and Zach just completed their first trimester in 4th and 2nd grades. Ben will start Kindergarten in the Fall of 2014 and he is currently being home schooled for preschool by Melanie. Zach played another season of baseball, with Sean as his coach, and Ben played his first season of T-ball, while Josh was in the Chess Club at school. Josh, Zach, and Ben participate in the running club at their elementary school, while Melanie volunteers for it. Melanie does a lot of volunteering in the classroom. Josh and Zach have quite a school, each student has an iPad, they do yoga, karate, garden science (which Melanie volunteers for), music, PE and many other activities no longer offered in public school.

We have been blessed this year with great friends and family who have helped us out through the hard times and been there in the good times. May you all have a wonderful Christmas and a blessed new year!

The Kabos
Melanie, Sean, Faith, Josh,
Zach, Ben and Honey (our dog)

On the right hand side of this blog under the "Never miss a post!! Follow by email..." you can enter you email address and you will be emailed any blog posts I make, usually updates about my treatment, sometimes diet changes/alternative treatments we are trying and trips we do as a family will be written about. Feel free to check out any other blog posts while you're here. I try to post pictures, if you'd like to keep up with the every changing/growing kids you'll be able to. Please don't feel like this is something you have to do, it's just an option of keeping up with us as Melanie is no longer updating carepages. We thought this would be better as we could later turn it into a memory book for our children. Thanks for stopping by, we appreciate it!!

Saturday, December 14, 2013

Chemo...feeling like a failure

On my last oncology visit, Dr.Rudnick (12/11/13) said he'd really like me to start on chemo right away. I, of course, had a plan in my head and told him that I wanted to wait until the start of the new year, so that I could enjoy my holidays with my family and have time to sit down with a calendar to plan my 5 days on, 23 days off and avoid important dates next year, such as spring break, birthdays, etc.

He informed me that it's not that easy, because of my white blood cell count, we may need to push the start of my chemo on different months, so it won't stick to a schedule and with my tumor growing by 20% he wanted me to start right away and the chemo came in the mail the very next day (12/12/13) after my doctors appointment...

So I started my 5 days on Friday the 13th!!!

Day one: I took the chemo pills (4 of them) as well as my anti-nausea pill with a large cup of water at night, so I'm not sure if this should technically be called day one or not as the next day is really the first full day. Anyways, that night I must have gotten up to pee about 6 times when I usually don't get up to pee until the morning time. Not sure if that was a side effect or if it was because of the large glass of water I drank.

Everything went well during the day, but I was still peeing more frequently that usual as well as drinking more water than usual as I'm supposed to drink a lot of water with this chemo.

Day 2: The morning after my second dose as well as during the night my stomach felt really crampy, like shooting pains through it and after talking with a friend who had taken this type of chemo...stool softeners were soon going to be my best friend!!

Day 3: The stool softeners did the trick and my stomach felt much better, I felt pretty good still, started to get a little tired.

Day 4: The day after my 4th dose is when it hit me, it was a Monday and as soon as I picked my kids up from school, I had to come home and lay down. I was exhausted and starting to feel like I had the flu.

Day 5: It definitely hit me, I even posted on Facebook that I felt like I had gotten run over by a bus. My whole body ached. During the middle of the night my husband put his arm around me and it felt like my whole arm was bruised and if you know me, touch is my love language, I had to push Sean's arm off of me.

Day 6: Oh yes, it hit me. Last night was my last 4 pills, but today I feel like a train wreck. I feel like I have the flu, everything aches. But I don't have the flu, luckily.

Day 7: Today I'm feeling slightly better, a little achy when I woke up, but definitely better than yesterday! Which is good, today (and every Wednesday) my kiddos have running club at school, so I usually try to run with them and volunteer. But this day on my walk to their school, I fell down and ended up scraping my hand pretty bad, which took forever to stop bleeding (I think the chemo must thin my blood, because I've never had this happen before). I realized then that it wasn't a good idea for me to run or even walk the 1.5 miles with my boys, so I stayed back and timed the kids as they came in. I also got to hand out candy canes to the runners!!

Day 8: Feeling good today, still a little sore, I decided to do my cancer yoga class, which is great for stretching and relaxing. It felt good and I felt wonderful for the rest of the day!!

Next round of Chemo will begin on January 10th if all goes well and my blood wotk comes back good! It will be a higher dose, so I'm keeping track via this post of how my days went, but it may (hopefully it won't) be different, but next time I'll have my mom down helping me as much as she can!!

Thursday, December 12, 2013

Results and my next steps...chemo :(

The surgery went well and Dr. Black believes that he removed everything that is visible on the MRI and the pathology showed that it is still a low grade tumor (stage 2) and the cells are dividing at a 3% rate. Now I took that number to mean that that is the rate it is growing, however I was sadly mistaken.

Yesterday, Sean and I went to see my new oncologist, Dr. Rudnick up at Cedar Sinai Hospital. He and the whole tumor board recommend that I start chemo as he said my tumor grew quickly (complete shock to me as I was thinking, mistakenly that it was growing at a 3% rate), and Dr. Rudnick believes it has grown 20% since my last surgery 18 months ago.

He recommended starting chemo, which we knew he would and planned to start it after the holidays. However, because of the rate of growth, Dr. Rudnick, recommended starting it right away and said that since we don't know how much it's currently growing, the sooner I start the better. So they ordered my chemo (pill form) to be delivered to my house and it came today...

....along with a lot of warnings! As well as coming in a specially marked bag!!

*I have to pee in my own toilet, not shared with others.
*I have to flush twice if I puke.
*I can't touch the chemo pills as they are toxic and have to pour them into the lid to take them.
*My kids and husband can't touch the chemo pill bottle

Along with all the warnings came many strong side effects...

*severe nausea and vomiting
*headache (which the anti nausea pills cause also, yay me!)
*loss of appetite (that part I really don't mind)
*night sweats
*and the rare symptoms...mouth sores, swelling of feet/ankles, easy bleeding, bruising, swollen glands

I've also been told by those who have taken it that it'll hit hardest after my chemo cycle is over, you mean to tell me that when I think I'll be celebrating finishing my chemo, I may actually be worse off than while taking it...that just doesn't make sense!!

So with all of that being stated, I will be starting these pills on Friday night, hoping that I'll feel OK for the weekend with my family and only getting sick during the week while my kids are in school, feeling better by next weekend (I can dream, can't I?)!!

I'll try to keep this updated on how the chemo makes me feel, what it does, etc...
I'm definitely going to keep a journal.

Monday, November 18, 2013

Brain surgery #4, here we go again...

So you'd think I'd be an old pro at this by now, but I'm not at that level yet and hope to never be!!

As we went with a different doctor and hospital this time, things were different.
I had an MRI the night before where they placed "markers" on my head as seen in these picture. This is the first time I've had this done before as well as having to wash my body for the 3 days before the surgery with a special antimicrobial soap from head to toe.
I was told to keep the markers on during the night and not to wash them off, so they stayed on all night and I went into surgery with them on.
The morning of surgery, I had to go into a waiting area and get ready, then my family was allowed to come in and say their prayers and whatever they had to say before I was wheeled out.

I don't even remember being wheeled out this time as I do from the past surgeries. I think they put some good drugs into my IV before and I must have been out of it. I wasn't worried before, I know where I'm going if and when I die, so no fear there. It's always hard saying goodbye though, but this time I don't even remember that. I clearly remember the looks on every ones faces from my 3rd surgery and wanting so badly to see them to ease their concern after the surgery, but I had none of that this time!
And, I'm off! I don't even remember taking all of these pictures, but I love the blue hair still!!
And while in surgery, I guess my family waited in the cafeteria and Sean snapped some pictures, lol!
if they let him...
And after 4 hours, the surgery was over, 
but my pupils weren't dilating and the nurse was very concerned, even calling to surgeon to come out.
And while my family watched me in recovery, the nurses and doctor made sure I was ok, which I was. But I did (as always) get very sick coming out of the anesthesiology, as you can see I have my blue cup next to me in the bed. I love how they wrapped my head up in a turban with a little of my blue hair poking out the top!! But that thing was so tight and I couldn't wait to get it off!
I was then moved to my own room and this time did not have to go straight to the ICU, I went to a step down ICU on the brain floor, which made me feel much better, like I was safe and they weren't too concerned about me.
I slept much of the time in there and felt really sick, holding onto my blue cup much of the time. I did receive a liquid meal the night of the surgery, but had no desire for anything in my stomach, so I skipped it. I couldn't even keep water down. I had the dry heaves all night and even in the middle of the night when I was taken away for an MRI, I had the dry heaves, movement was really bad for me at that time.

Sean was able to stay both nights in a roll away bed  in my room, he slept well and it was so nice having him there with me the entire time.
The day after the surgery, Dr. Black, came in to check on me and gave me some much needed release in pressure by taking the bandages off my head.

 After all of these surgeries, I've learned that the sooner you're up and walking...the sooner you'll be released from the hospital. I wanted so badly to be released on day 3, the soonest they would release me, so I walked the halls and did the stairs with a physical therapist.
I also had to do many breathing exercises which are much harder than you would think, this one was simply breathing in and trying to get at least 2 balls in the air at a time, the third ball was just about impossible for me to get up and it seemed to take so much just to breathe in!

And then I was released on the 3rd day and stayed overnight at my inlaws' house up in LA, making our way home on day 4.
Once home and all bandages removed, I was told that on Sunday I could wash my hair. Not having the strength to stand in a shower yet, but wanting the bloody clumps washed out of my hair, my husband and mother-in-law washed it in my kitchen sink. The swelling was huge and all the way down to my eyes, yikes!!
A better look at my incision sight, not too bad...the doctor did a great job on the sutures, from what I was told!!
I'm still very swollen in these pictures and just so happy to finally get my hair washed! And someone put a little braid into my hair, which you can see in the front!
It really is the little things in life that truly make a huge difference! (BTW, there was still a lone "marker" stuck in my hair)!!
So much to be scrubbed out. The doctor shaves a patch, but leaves the hair in place which gets bloody and dries to my head, leaving very messy tangled hair, so it was a huge chore to wash out. 
Finally feeling semi normal since the for the road to recovery!

Wednesday, November 6, 2013

I went Over the Edge for Brain Cancer

When given the opportunity to do anything concerning cancer, especially brain cancer, I'm not going to pass it up! A mentioned before I was given the opportunity to repel down the tallest waterfront building in San Diego, the Manchester Grand Hyatt Resort and I wasn't going to pass it up even though it wasn't on my bucketlist!

We drove up the morning of November 3rd to the Hyatt and I looked up and took this picture of where I would soon be repelling, wow that's high...but I had no fear, I was a week and a half away from my 4th brain cancer surgery, there is nothing I can't do!!!!

 My friends and family from near and far started gathering for me, it was great seeing them all!
Above pictured with my very supportive Uncle Charlie and below with my wonderful mom, Diane.
 Then it was off to registering and getting fitted into my repel equipment and of course since I rocked the blue (pre-surgery) hair, I had to have a matching tutu and leg warmers to complete the outfit!
 My friend and fellow brain cancer survivor, Nicole showed up to cheer me on.

 Trying to figure out how to keep the tutu on during my repel, we HAD to make it happen!!

 But at first it would have to come off to get my gear on...
 And it did
 Sean capturing every possible image of me, even tightening my straps!
 I had a double camera on my helmet to capture everything!
 Ready for the tutu again!!
 And it works!
 All ready to go...
 Being in several cancer support groups I have seen many friends pass away to cancer,
 so, I wore three pictures on my back for them to have the best view!!
 Testing out my gloves by roaring at my hubby!
 A few media pics before the test wall!
 Showing off the friends I carried on my back! The day before my repel I attended the funeral of one!

My "care person" leading me up to the top!!
 Many of my supporters watching me get started. I was told by several people that I had the largest support group there watching me! I know that several of my supporters have made the decision to raise awareness/money and repel next year!
 I'm looking forward to a "blue" team next year (maybe all with tutus)!!
 Photo announcing the start of my repel!
 My blue tutu blowing over the edge!
 Renee (whose husband's funeral I attended the day before) cheering me on as I start my descent!
 Making my way down...
 to the bottom!
 And I'm down!
 YES!! I went over the edge for Brain Cancer!!
 Picture time!
 Trying to round up my group for a big group picture
 And here we are!!

 Sean and I with Renee and Chuck, whose funeral we attended the day before
 With Max, the CEO of ABC2 (Accelerate a Brain Cancer Cure)
 With My friend Monika another brain cancer survivor
 And other survivor friends from my
"Stupid Cancer" San Diego area group
 My friend and huge supporter, Stacy, whom I used to work with before having 4 kiddos!
 My oldest baby, Faith, supporting me all the way....
 and now trying to talk me into jumping out of an airplane with her...
 which I think will be next!
 Rockin' our "stupid cancer" shirts
 My survivor friend Kristen, daughter Faith and I!
 My matching family picture before leaving for the day
 possibly a Christmas card picture
if only we all looked good in each pic!

When given this opportunity to go over the edge and fund-raise, I never knew if I'd be scared going down 365 feet! In the end I had absolutely no fear, it was unbelievable...I must say fighting cancer is much more challenging than repelling, but I'm so happy I was able to take a part of it!
There is still some time to help me reach my "goal" if you'd like to donate here!! And I will be sure to post this again next year when I register to do it as a team with my fellow supporters!!!