We were the closest family possible. Our world was turned upside down on 05/03/09 when my best friend, the person I love most next only to our children, my sister Trina was diagnosed with stage IV breast cancer. Her body gave out on her on 01/09/10 but she will ALWAYS be a part of our daily life and will continue to be in my posts. I started my blog to chronicle our daughter's international adoption from Guatemala and have continued to use it as a journal.

What you will find is my family trying to adapt to our new lives that were handed to us.



Friday, October 16, 2009

More Info

So here's the lowdown.


Remember a few weeks ago when sissy's tumor marker numbers were increasing? Well, mom and sissy went online and found that they can spike as the cancer is being flushed out of the body. That was not the case. Sissy is currently on two chemo drugs, Avasin, which attacks only the cancer cells and Taxol, which attacks all rapid growing cells. Tests show that the cancer has mutated and adapted to the Taxol, which means her current course of chemo is no longer working.


Sissy's bone phosphate levels when she started chemo were 400. It's my understanding that these are somehow tied in with her liver enzymes. About a month ago they had dropped to 105. They are now 180. The doctor said that her tumor marker numbers have also increased, but did not say what they are.


THIS IS BY NO MEANS THE END OF THE LINE.


It just means that she will have to change meds. She will remain on Avastin but will now do a new chemo drug which is a pill and she will take it twice a day. This is supposed to have fewer side effects but who knows. The doctor told sissy today that she has had every single side effect ever known from the Taxol. She's a regular 'ol medical marvel! Which in a way can be good because that way if they say she won't get better, well, her body will do the opposite.


Now for the bad news that we already knew.


Sissy again asked her doctor if she will ever be cancer free. No. MEDICALLY SPEAKING she will never be in remission. She will always have cancer. THAT SAID, her oncologist said that he HAS seen miracles. As far as I know, he did not elaborate on that but just that he has seen miracles happen and he does believe in them. He also believes in the power of prayer.


Needless to say, this is a scary time right now. I don't think I'm being a Negative Nelly in saying this. Mom, sissy and I all sat down this afternoon to go over what the doctor said (I stayed home to watch the kids) and agreed that yes, this sucks. This isn't what we wanted to hear. But it's also not the worst news. The doctor said it's ok to cry. It's ok to be scared. It's ok to be upset. So regardless of what other people have told me, have said what I'm feeling is wrong, according to the doctor it's very normal. He also said it could be beneficial for all of us to cry together. We don't always have to be strong. That said, we will all continue to live our lives. What else are we going to do? Not that I owe ANYONE any explanation, we DO have fun. We DO go out and be our "new normal". We DO laugh and just plain enjoy each others company. That will not change, no matter how many times sissy may have to change chemo meds.


New bone and CT scans will be done to see how much the cancer has progressed. She will then be monitored once she starts the new drug. Again, the side effects should be less. We are ALL hopeful of this and provided that sissy feels well enough, a trip to the beach is being planned for our near future.


Are we scared? Hell yeah.

Do we have faith that she will get better? Hell yeah!!!!

Will we stop living our lives? Hell NO!!!!!

I feel oddly peaceful and calm with the news. That's not to say that I haven't cried. I don't often look back and I rarely look forward to the future. I'm living in the here and now since that is what we have at this moment. Things could be better in a year, they could be worse. I have no clue and will just concentrate on right now. Sissy was talking to me the other night, upset that she couldn't remember things Valentina did over the summer. I laughed and told her I couldn't remember things Valentina had done last week. The past 5 1/2 months have been a blur to all of us and that is because we are staying in the moment. I try to document things in Valentina's "baby" book because time does go by so fast and I do forget things.


The past 3-4 weeks have been kind of shitty. Sissy has been in the midst of a bipolar episode for about two weeks which all by itself is difficult. Add cancer and chemo into the mix and it's downright fucked up. But what else do we have? This moment and this moment alone. We are very thankful that she has a medication that helps keep her calm and assists in leveling out her moods. So again, we have much to be thankful for.


In other news, Asa is still sick but as of tonight he is on the upswing. He was finally able to eat something..... and keep it down! He's so skinny that he doesn't have room to lose weight and yesterday when he went to the doctor he had lost 6 pounds. He's down to 34 pounds. It's hard to get him to eat so we have our work cut out in trying to get him to gain weight.


Valentina has also been sick but as long as she is on Tylenol and Motrin, her fever stays at bay. And once the medicine kicks in, you canNOT keep my girl down! It takes about 45 minutes and then she's running around, dancing, playing and acting normal, other than that sickness in her eyes. Last night when she woke up at 11 pm and I couldn't get her back to sleep, I did something I've only done once before, if that; I brought her in to bed with Norm and I. She woke up at 4 am crying and feeling shitty. Her fever was back up to 102.5 so we got up and hung out on the couch. Once she started to snuggle with me I suggested we go "sit in bed". Sure enough she fell right asleep and slept until 7:30 am, which for her is like sleeping in until 10 am. She has also taken naps the past 2 days which is rare. Tonight, however, she was a pill to get to sleep. Normally it takes me about 10 minutes, but tonight? Tonight it was an hour and a half. I started praying that she would just go to sleep as Valentina would cry "I NOT GOING TO SLEEP! I DON'T WANT TO GO TO BED!" and I was getting to the end of my rope. I started praying and told God I also needed a sign that sissy would be ok. I told God that if Valentina fell asleep in the next five minutes then that would mean sissy would be fine and go on to live a long life. Granted, this was after 90 minutes of trying to get Valentina to sleep, but she conked out in 3 minutes. I know this because I counted the seconds on her clock. I know this isn't scientific, hell nothing about faith and belief in God is scientific, and maybe later on I'll chalk it up to coincidence, but tonight? Tonight I take it as a sign that yes, sissy will be ok. After all, only God knows what the future holds and tonight God told me things will be fine.

9 comments:

Krystal said...

None of your feeling have ever been wrong. Considering the circumstances, you are "right" to feel any and every emotion possible. Your "job" is to help your sister, and Cameo, you are doing an incredible job right now! You are loving your sister, supporting her, and helping her in every way possible. It is clear that Trina knows that, so don't ever let anyone tell you that you are not handling this in the "right" way.

We will continue to pray for Trina's healing. I wish the tests were just showing that the cancer was going away completely, but if you need to throw a new drug in the mix, the possibility of fewer side effects sounds great!

I'm praying for Asa and for your whole family. The sickness needs to leave you guys alone!

Grama said...

I would grab onto that promise too. Praying today brings health to all of you and things start looking up.
Love to all

mylene said...

Right on Cameo. You have got a great attitude. The present is truly what matters. I wish things weren't so difficult for Trina, but I am so glad she has you. I keep praying for all of you. Love and God's blessings...

Alaska Family said...

Everyone we hear from is sick...! Hope you all start getting better soon, and stay better...seriously! Praying for you all.

Beya said...

It hurts me so much when people criticize you. I would like everyone to know what a kind and supportive sister you are. This is your blog where you let all your fears and thoughts out. No one knows how close you two sisters are and how supportive you are to each other. You have the right to say anything here and I love and admire you very much. Love, Mama

Anonymous said...

You are all in my thoughts and prayers. My Sunday school class will continue to pray.
Cherrie

Jen said...

Hi Cameo~

Whew...what a whirlwind you have been through lately!! As I read your post, I couldn't help but think of how we have become experts in medical jargon!!

You are the most amazing sister and I admire how much you have jumped in and taken over to the best of your ability.

So many things you mentioned in this post have hit home!!

"The doctor told sissy today that she has had every single side effect ever known from the Taxol. She's a regular 'ol medical marvel! Which in a way can be good because that way if they say she won't get better, well, her body will do the opposite."

ABSOLUTELY, I couldn't agree more with this statement.

"Sissy again asked her doctor if she will ever be cancer free. No. MEDICALLY SPEAKING she will never be in remission. She will always have cancer."

Ohhhhhh, the worst case scenario doctors. I finally learned that they would be doing me a dis-service to tell me anything but the worst. For them to give me hope and than nothing happened, that would be devestating. But to slash all of my hope and then to be pleasantly surprised....I have to admit, as hard as it was to take it in the beginning, I would now prefer it. Everyday is a blessing.

"I feel oddly peaceful and calm with the news. That's not to say that I haven't cried. I don't often look back and I rarely look forward to the future. I'm living in the here and now since that is what we have at this moment. Things could be better in a year, they could be worse. I have no clue and will just concentrate on right now."

I couldn't have said it better. What a shift to have to live this way, but how refreshing it can also be at times. Have you read "The Power of Now or A New Earth?" Great books, in fact since this happened I better go re-read them!

"I started praying and told God I also needed a sign that sissy would be ok. I told God that if Valentina fell asleep in the next five minutes then that would mean sissy would be fine and go on to live a long life."

I find myself doing this at times too. You know I believe there are no coincidences : )

You are such a strong family and I think of you all all of the time. Please tell Sissy I pray for her!!

Take care and I will talk to you soon!!!!

Love,

Jen

Valerie said...

Oh, Honey! Can I say, I feel what you are going thru? This all sucks, there is no other way to put it. It sucks that the holidays are just around the corner once again and cancer is still in our lives. I know the guilty feelings you are having when little things at home stress us out then you look at our loved ones whom are fighting for their lives and feel guilty b/c we aren't remembering that. I hope this makes sense to you! Your whole family is in my thoughts and prayers. Love you!

Anonymous said...

Know I'm thinking of you! All the time.. your entire family. BTW... we use 1 mg melatonin for 2 of our kids. They fight sleep sooo dang bad and their doc was fine with it as its natural and if they dont need it, it exits the system. It's been a Godsend for us!!