Oncology on Canvas...

My hospital, Tripler, hosted an Oncology on Canvas event... I took my husband and son, and we painted our hearts out! I will share with you my painting...

"For me, one of the hardest things about getting breast cancer was the pretty pink ribbon. Breast Cancer isn't a dainty pink ribbon. It's a mutilation; an amputation.

For  me, breast cancer meant a double mastectomy, full hysterectomy and oopherectomy. It was a journey that got worse before it got better. It was bloody. It was red."

It's been awhile.

Hello Internet Peoples!

It's been a long time since my last post. You can take to mostly mean that things are okay. Cancer is gone. Surgeries are done (for now). Healing has happened.

My biggest fight now is to get my immune system back up. Dr's say it will be about a year before I'm somewhat normal. Low immune system has meant more colds, more asthma issues (not sure how that works?), and a kidney infection. That last one was a drag!

Radiation has left a permanent discoloration on my chest and underarm. It also has caused some swelling, or lymphedema. Not fun, but I will live with it my whole life, so it's okay. Some days are worse, on those days, I can't wear my prosthetic breasts. The pain is too much. So I put on a pretty scarf, even in the hot Hawaii weather, and call it fashionable. I look kinda cute in scarves!

Reconstruction is a ways off. I want to lose 40+ lbs prior. Hey, if I'm getting a tummy tuck, I might as well make it worth it! For those who aren't aware, they will be taking skin from my abdomen to reconstruct breast-like shapes out of.

So that's it for now! I will try to keep more regular with this, as my journey didn't end with treatment... Cancer follows me daily.

Reata

agh...

I suppose I could have come up with a more clever title... But it wouldn't be as accurate.

I had a little, maybe a big, panic attack in the ER last night. I kept it mostly to myself... Brad knew it was happening, but I was able to breath it mostly away.  It's the first time I truly felt like I was going to black out and fall to the ground at any given sec. I even decided to take my jacket off, just in case my skirt came up on my way down and Brad needed something to cover me up with.  Lord forbid anyone see my underwear! ha. 

Last week I had a prophylactic hysterectomy and oophorectomy. Once again, just in case you're totally lost at this point, I have the BRCA1 gene mutation... which predisposes me to cancer of my lady bits. So it was best to take them out, instead of suffering a recurrence. 

As we watched the Avengers last night, I noticed a bit of wetness... but I was way too into the movie! By the time the movie was over and I went to the bathroom to see what was going on, I was soaked.  My incision busted open, just about an inch... and through that inch, fluid was still draining out, a mixture of blood and who knows what. 

Fast forward to the ER... I get called to triage and explained why I came in. That's when I noticed the lights were going out in my head and the stars. The nurse says my heart rate is fast, but that's normal, after all, I am draining bloody fluid from an open wound in my abdomen. Right. 

The night passes. I see my surgeon. He explains they expected me in the ER, due to the trauma. Thanks for sharing that news with me... I thought I was healing well! But I guess "well" has a different definition after you've already had cancer by 30, double mastectomy, chemotherapy and radiation. The last of which only finished three weeks prior to surgery. Anyway, they will probably end up cutting it back open a bit more, and I will be keeping the very deep (seriously, you could lose a qtip in it) wound packed full of gauze, so it can heal from the inside out. 

So why the panic attack? I've been through so much worse in my seemingly short life. It was the fluid. I'm holding back emotions just admitting it in writing, to anyone who even reads this.  I watched my mama and sister pass, as you may know. I cared for them both during the last 8-10 months of their lives. What do you suppose was the first sign they were terminally ill?? A belly bloated and hard with blood and fluid. Mine isn't cause by cancer tumors, nor is it caused by liver and kidney failure due to side effects of chemotherapy. Mine is just plain ole surgical complications. 

But that didn't stop me from flashing back. 

Today is my mama's birthday. I know I won't see her again anytime soon. So Happy Birthday Mama... I wish you were here... 

Treatments are OVER?!

Yes, you read that right!

It's been a long journey that started almost a year ago. But there WAS a light at the end of the tunnel, and I am now basking in it.

My last radiation treatment was last Tuesday. Thank you LORD! Radiation did not treat me well. So many people talk about how it's so easy compare to chemotherapy, and just feels like a bad sunburn. I learned the hard way that these people were very very lucky. I, as it seems happens quite often, was not so lucky lol.

Let me start by saying that I did and do have full faith in my radiation oncologist and his whole team. They were AMAZING! I want to take them all to Disneyland! As soon as I win the lotto =)

Now, I must tell you, that by that last day, I hated them! Don't misunderstand, I gave them nothing but love, but I truly felt tortured and ready to quit! I suffered 3rd degree burns to my chest wall and underarm.  My skin was black... and in the worst spots, white O.O yes, apparently white is worse then black. I could go into why these burns happened, but I'll spare you, unless of course you need to know because you are about to receive radiation, in which case, I will edit this and include the reasoning.

For radiation you go in daily, and you get to know the techs really well.  I had a team of three guys who did my daily radiation, and they were so sweet to me. I has read on other blogs that you should take leg warmers for your arms, because you get cold as you hold them above your head the whole time during treatment. Nope, didn't need them, the techs, EVERYDAY, put warm blankets around my arms, and over my bald head. As well as the normal spots on the legs, and wrapped around my feet. I couldn't have asked for a gentler, kind group.

I rewarded them with lunch on my last day =)

What's next? I can keep healing until Oct. 4th. That's when I have my next surgery. This one is to remove my uterus, ovaries and fallopian tubes. The reason for this is because with my BRCA1 gene and TNBC, I was told my chances of ovarian cancer by mid 40's is about 50 percent.

So take the last of my lady parts! I'm a survivor and I got this!

It's been awhile... I know...

Things have been a bit crazy around here... Not with the cancer stuff... Just regular 'ol life.

Cancer-wise? Chemo is completely over, yay!!! I had two more biopsies that came out negative... My port was removed last Friday, or as ! my tnbc sisters called it, de-port-tation lol Let me speak a little on that port removal... As some of you might know, the worst surgery/procedure I've had through all this, was the port placement... They don't put you to sleep... just shots of numbing stuff... you're in an uncomfortable position, with your head and face completely conceled so you keep germs of the area they are cutting into... It's hard to breath, hard to focus, hard to get through! So I was none to excited about the removal.

Overall, it was better then the implant. If only because of the fact that I knew what was ahead and made some adjustments to my arms and blue paper/plastic over my face... So the position wasn't as painful to hold for an hour or so, and I could see the wall through a little spot, which made me feel like I could breath a bit better... What a relief! But again, you're awake... so I tried not to, but I kept just focusing on what they were doing... "hm, that scapel cutting feels weird... now they are digging at the skin that's encapsuled the port... ouch that part isn't numb!"... the tug tug tug... pull pull pull... squeeze squeeze squeeze.... still no port... call a different Dr.... more cutting, more digging... "wow that port is wrap in a good little pocket of skin... oh don't worry ma'am, i just stabbed you with a blunt intrument, not the scapel"... lots of squeezing by this new Dr who seems to be teaching the other Dr's what they did wrong to begin with... He tells them so that they don't have to cut a bigger scar, they will just keep squeezing and pop that port out like a pimple! "there's going to be lots of bruising ma'am... you might want some pain killers by tonight"

Finally it's out! they rinse out the wound with saline... wow that's cold and painful! they tweezer out some chunks of flesh that "no longer have blood supply"... weird dude... so weird... then they sew me up... in three different layers! Nurse bandages me, gives me lots of spares, and sends me on my way! lol I walked out of there like it was a regular dr's appointment!

So, other then that, I had radiation simulation today... they marked me all up, put some semi permanent stickers on me and will see me on thursday for the tattoo mapping that will be a permanent reminder on my chest of radiation treatment. I'm going to feel all gangsta with my radiation tattoos =)

Radiation will be everyday, except Sundays... for about 46 days. So why do I have to have radiation? Isn't the tumor completely gone now? Well yes, it appears that it is (yay again!) I took my chichis off to confirm it would be... BUT given the size of the tumor, my BRCA1 dna mutation and the fact that it's triple negative cancer, radiation has a good chance of increasing my 10 year survival (in my case, meaning that the cancer won't show up somewhere else in my body, which triple negative likes to do) .  So that's fine by me... anything that will stop a recurrance... I've heard of, and seen too many of my tnbc sister pass after recurrance... It appears that when/if it comes back, it's with a vengence like no other cancer I've experienced with my family.

So the ultimate goal is to do everything in my power to insure it doesn't come back. After radiation, I'm removing my overies and other womanly parts (my BRCA1 puts me at high risk for cancer in those places). And then I'm doing a study with a known diabetes medicine that for some reason has reduced recurrance in breast cancer patients. So they want to study if it will impact recurrance in those of us who take it who don't have diabetes. Here's hoping! Oh, I'm also taking part in a study while I'm on radiation... this study is to show whether there's a correlation between radiation skin reactions and ethnicity. I just think studies are neat, so why not? They needed more Hispanics in the study, so they were estatic that I agreed =) anything to help the cause!

Pray for a cure, Pray for further medical knowledge on Triple Negetive... Chemo doesn't work on us as well... and hormone treatment is out of the question... We need more research!

Thanks for reading!

Last day of chemo!!!

this will be a short post... as I don't have too much to share... other than the fact that chemo is over!!!!

now, in saying that, I do have to share some bumps and lumps... as you know, there are two new lumps in my breast tissue that's left (as i had a skin sparring mastectomy in order to make reconstruction more successful later) ... one lump had turned spongy, which is good news... so it's probably just fat necrosis... the dead fat cells that are left, teaming up together and forming a lump.... but the other lump is on my chest wall... between two ribs... and it's hard and set in it's place, so to say... this one worries them.

so, after my oncologist talked to several dr's in mammography (they would do a biopsy), they decline trying the biopsy on me, in fear they'd puncture a lung... so he was given a radiologists name (female) who he's told will take more risks if the patient is a breast cancer one... so she came to the office as soon as he called her... she felt the lump and said she'd  try, only if mammogram assisted her with ultrasound... and if she felt the lump was too close to the lung, or on the outside of the lung (which is their fear) then she wouldn't be able to do... SO, i know this seems like a lot, but i'm not feeling like it is!

here's why... Triple Negative Breast Cancer isn't a one shot and your out deal like regular breast cancer can more often be... most likely I won't be celebrating 10 years of free and clear... i learned during this last visit that with further testing of my 4 cm lump, my survival rate past 10 years is 58%... not the greatest numbers... so, i'm ready for a fight... this may not be my last chemo in my lifetime, but i'm done THIS time, and i'm so happy about that =)

i've always gone through life thinking I was a realist...and people put me in the spot of negative... but i'm not negative... not at all! i face life, accept it... and move on! i smile, i laugh, i play bubbles with my son, i dance to silly songs in the bathroom naked! lol what more can i ask for?? i'm blessed... we aren't promised anything... so i take what i get, and i'm happy with it... that's what a realist is... that's who i am =)

turned out to be longer than i thought! thanks for reading through the typos and poor grammer... maybe i'll fix it later when my son isn't jumping on the bed next to me =) but for now, i need to tackle him!

3rd Taxol down... almost there!

Only one more treatment after this! Then I'm done with chemotherapy and I move onto radiation therapy.

So what new is there to share with you? Well, my toenails are getting black spots, which is a normal side affect with Taxol, since it kills your nerves in your feet and hands. But, I'm not suffering from neuropathy ( when those nerves die and cause extreme pain, which is how I understand it). Some of my feeling is gone (they do this cool vibration test to determine that) but nothing the Dr is super worried about yet.

My fingernails are showing signs of seperating from the nail beds. Again, normal side effect. It's not to bad yet, I don't think they will actually fall off (at least I hope not, fingers crossed!).

The Taxol causes me extreme pain in my legs, but they stopped giving me the white cell booster and started me on Gabapentin (sp?), a nerve blocker.  Thats kind of helped. It's not as extreme, but still very sore. The doc gave me some pain meds so I can keep up with my 3 year old lol. (whom I have to take care of alone for the next few weeks, as my husband left to pack up our house in VA so we can make this PCS to Hawaii official)

Situation in the house we're living at is a lot better. We got in trouble from my brother-in-law, owner of the house, for acting like kids. So, that straightened things out with everyone and we're all on talking terms again. I keep in mind that I'm thankful for a place to live through all this, but am excited about getting the house in VA shut down so we can finally rent our own place here and stop mooching off of him. I know they need space to mourn for the lost of their mom, his wife, my sister. I need my own place to mourn too.

I keep wondering when, if, I'm going to break down about all this. Chemo is almost over and I still feel strong in spirit. Maybe I won't break down at all? Is that normal?? Of course, I've had my days of questioning and a little sadness, but no break down, no week of laying in bed and crying. Oh well, I'll be thankful for that strong spirit I've been given and stop wondering when I'm going to be weak... It's a silly thing to wonder, isn't it?

Once again, thanks for reading and listening!