After chemo blues

Hi everyone,
So as you all know I finished my chemotherapy a few months ago and this means I'm all done and everything is great in the world! Nope actually it's hard for me to say I'm a survivor and be super excited because my chemicals are still low from the chemo ass kicking that I got. The PTSD symptoms are coming around and I've never felt so low especially after an incredible victory like this one. What's wrong with me? This makes me feel like a bad person for being depressed after such a victory. I googled it to see if this is a common response and low and behold it sure is normal. I expected to get my energy back after a month but I could hardly get up and down my stairs or get to my car without feeling like I had just run a marathon with a babies heart in my chest. This really let's me know the fights not over. The fight to beat cancer comes in so many different demons and when you think you're done sometimes the battle is just beginning. When my body didn't bounce back after a month I asked my doctor just how long would it take for me to be able to go up my stairs without feeling like I was having a heart attack and he said it could go from either 6 months to a year or more. Great so what do I do now? I can only lay in bed and watch Netflix so that those tv shows take me into stories that bring my attention off of my out of control life.
I didn't write in my blog for so long because I was so low in my head and depressed. I didn't have the words to explain how bad it was but since my energy has been coming back little by little I am able to expressive best I can in this never ending recovery.
I started seeing a sleep doctor and a cancer therapist.

Breast Cancer Time Lapse Video

http://www.youtube.com/watch?v=-SbVIdBxOgo&sns=em

Still not over

Hi everyone,
I'm sorry it took so long to write after my mastectomy but i have been dealing with things that I didn't expect but I guess I should have.  I'm working hard on trying to get my head straight after chemo and the surgeries but the lows are very low and way too often.  I am depressed and now have to get help for that.  Its a chemical issue and needs to be healed but I don't want medication to get straight again.  I have to now see other doctors for this and I will be better I hope soon.  My best friends are going through some amazingly positive things and they have let me be a big part of that which has made this easier and I thank them for that.  I feel blessed.  I had my mastectomy and was suppose to be in the hospital for at most 3 days but I went home on the 5th day.  It was harder then I was told but I guess it usually is easier and most women bounce back faster. I took my pain meds through the chemo for the bone pain and all of that and also through the surgery so now I'm dealing with slowly getting off of those which has been hard but I know I can do this.  I have been watching a lot of netflix which has helped keep my mind off of things but easily the shows capture my emotions and they change my moods for how the episodes change.  I was suppose to be having my surgery two to three months after my mastectomy and then it would all be over and I can get my life back together but my doctor doesn't have an opening for surgery for 7 months so again I have to put my life on hold which didn't help the depression much.  It made me sink lower actually.  I don't have my job anymore so Ill have to start looking for something that pays well but the doctor said he cant clear me to start working again until i get myself back on track.  I have videos of after the mastectomy and photos of the drain tubes but ill save an extra blog at another date to go into full detail about how that went and what they did.  I used latisse on my eye lashes and eye brows and that made them grow back in a few weeks.  I found the generic stuff and ordered it and a lot more so if anyone wants to try some its $30 a bottle. I have about 25 of them. Its hard to write much because I know its not the best news and i should be happier but after i take care of these problems ill be on my way to a better life.
Thanks for following my story.
-Carina

A few days after my mastectomy.

My first Taxol treatment

Hi family and friends,

 I'm sorry it's been so long since I have written. Since I last wrote I went on full time disability so im not working anymore, had to get my lawyers involved because my insurance is not paying for anything with my breast cancer, I started a new chemotherapy called Taxol, survived chemo last week with a bad chest cold and food poisoning, and got a new puppy named Henry.

  My last treatment was a treatment called Taxol.  It’s my fifth treatment all together but my first treatment with Taxol.  The treatment takes 5 hours to drip into my system because people sometimes have an allergic reaction which could be deadly so the doctors need to monitor you the whole time. Two days before this last treatment I start to get a small cold.  I talked to my doctor and we decided to go ahead with the chemo and also use an antibiotic. I also received another Luron shot. The Taxol has a steroid in it that causes me to gain weight which I gained 10 pounds in one week. I've been very upset and emotional from the menopause and the steroid and also had to deal with the chest cold which became very intense. On top of all that I stupidly went and succumbed to my cravings and got McDonald’s. Later that night I got really bad food poisoning. I debated on either calling 911 or calling my mom. I called mom and she came out to help and nurse me back to health. Something about moms that make everything better with just the fact that she was with me. She’s also a registered dietician so she gave me the right food and electrolytes to make me better. Normally when I get food poisoning or a cold the poisoning is out of my system fast and I feel better in the morning and the cold will be gone at most in 5 days.  After the food poisoning I felt sick for 4 days and the cold moved into my chest and throat causing me to lose my voice and be really sick for almost 2 weeks.  After this last treatment a lot of my hair has fallen out my eyebrows and eyelashes are thin or gone as well. My finger nails have turned black and look like I slammed all of them in the door.   I've never felt so ugly and that's not like me.  I just don't feel like myself and I think that's what kills me the most.  I had decided I was going to go through this as strong as I possibly could.  I realized that in life you sometimes don’t have the choice of what life throws at you but you do have the option to either torture yourself through the experience by being sad or negative or you can make the best of it knowing that this way will make it easier for you to stay as positive as possible.  Then menopause hit.  The hot flashes, fluctuating mood swings, the cramps and crazy cravings are making that a little hard to be positive but I’m doing my best. J This last treatment of Taxol with the steroid and menopause makes it even more difficult.  Sometimes I want to not even worry about turning the knob to my front door and just smash through it to get inside while punching everyone on my way there and other times I want to cry because I had to walk up the stairs to get to the door.  It’s almost over though just three more treatments left, a mastectomy on July 2^nd then 4 weeks recovery and I’ll be ALL DONE!!!The doctor said if everything goes back to normal after this I should expect my period three months after my last treatment.  I thought I would never say this but I hope I get my period again.  A little funny fact:  The way I know that my body is coming back and my immune system is able to fight again is when I get a pimple.  Pimple is a good sign after chemo because it lets me know that my body is able to fight again.

I went on full-time disability starting Monday and I'm was going stir crazy not being able to go anywhere and trying to recover from that cold and food poisoning.  I think going to work kept my mind off of things. 

My insurance has denied all of my claims involving my breast cancer diagnosis. They are doing everything in their power to not have to pay for any of this.  They first claimed that they have requested paper work from all of my doctors involved in this diagnosis and treatment and said they hadn’t received any of what they requested.  I have had to call and be on the phone with my insurance 2 to 3 times a week since March which made it hard for me to rest and recover from chemo.  Then they claimed that my breast cancer was a preexisting condition.  Wait WHAT?? I must have forgotten going through this before.  They do anything they can to prolong this process and not pay for anything. This can’t be good for my recovery.  My doctor wrote me a prescription for 4 cranial prosthetics which is just a fancy way of saying wigs.  I went to the wig store and bought 3.  The women helped me try them on and made me feel comfortable with wearing them.  I spend A LOT of money on 2 synthetic and 1 real hair wigs knowing it was okay because my insurance was going to reimburse me.  The next day I called to see how I should go about getting paid back and Blue Shield’s rep told me they wouldn’t pay for it because they believe that people with cancer don’t need wigs.  It’s not necessary for cancer patients to get wigs so I didn’t see a dime of the wig money and the wigs were nonrefundable. I’m was screwed.  We have a lawyer but still the process is taking a long time.  I also am not working anymore until I’m recovered.  I’m only getting paid disability from EDD which is only 40% of my monthly paycheck so I’m trying to get by with peanuts here.  My medical bills are about to go to collections and all I can do about this right now is say “Oh well what can you do?”

Through this whole process I have learned that the most important thing in life is your health and happiness so take care of yourself.  If you stop focusing on that you could lose yourself like I did there for a little while.  I was in Grad school at night while working full time in the day and trying to make ends meet while finding and dating guys that really weren’t worth my time.  I never stopped to smell the flowers even though I work at a Landscape Architecture firm.  Crazy I know.  Now I have time to feel the sun on my face and the breeze on my bald head. 

Last week I got a puppy named Henry.  He is so cute and well behaved. He makes me happy and laugh all the time.  I have the time to train and take care of him now.  I got the Cesar Millan used books and DVD’s to make sure I’m being a great “pack leader” for my little man. Now I can also raise my puppy with my mom while she raises her puppy.  Henry is a Cavalier King Charles Spaniel and my mom’s dog, Tyrone, is a Rhodesian ridgeback. People will try to tell you the decisions you make in your life are wrong or they aren’t the right way to live but if you want to do something then DO IT. Only you know what will make you happy.  Easy as that.  It’s your life so live it as you feel you should.  People told me that I wouldn’t be able to take care of Henry during chemo because it’s a lot of responsibility and it was a very bad decision.  I got him anyway and I can’t be happier.  I love him. 

Sometimes it takes a life threatening experience to appreciate life.  When you are staring death in the face you have a choice to fight and a choice to give up.  We are wired to fight! For me there is no other option.  I look at life in a different light now.  I love the air I breathe and the sun on my face.  Life is good and worth the fight. I didn’t tell any of my family or friends what I did the day after I was diagnosed so where better to read this but in a blog.  Once my parents left my place I got online and ordered my username and password note book.  This book has a place for you to put all of your online and important accounts (bank account etc.) usernames and passwords so if you pass away your family and friends can access these easily to do what they need to do to close the accounts.  I also picked out my urn online and decided where I would want to sprinkled if and when I passed.  I didn’t do these things because I was accepting defeat or expecting to die but I did see that this was an option and these things needed to happen.  I was just imagining my family having to deal with my finances and loose ends and also asking all of my friends if they knew my plans if I ever unexpectedly passed away.

I have my next Taxol treatment tomorrow at 10:45am.  I’m going in without a cold so I’ll be able to correctly express my experience this time and will write more about my side effects etc. about a week after tomorrow.  Thank you to my family and friends for all of your help and support through this fight.  I cant say I would have been able to do this without you.

-Carina

One swipe through my hair.  A bit traumatic.

The shower after one wash.  I had to call the landlord to unclog the drain.

Me and my fake hair.

My mom shaving my head.

What I looked like when my hair started falling out.

How I really look...

and how I really feel

Adriamycin and Cytoxan chemotherapy

Getting chemo

Resting day after Chemo # 4

Chemo + food poisoning + chest cold

My hair after chemo #4 and my nails are black.

Henry

Henry on the left and his brother on the right.

Me and my boy.

Henry's first bath

My friend Colleen and I at her engagement party

drastic change in my look after the first Taxol treatment

Tara, Anne and I at colleen's engagement party

Getting blood

A/C

Being attacked by my little man

Days after Chemo

Treatment #3

Hi everyone,

After having my 3rd treatment I have realized that it never gets easier.  Some people say the first one is the hardest and some say the second one is the worst but I say they all have sucked equally :-)  After the second treatment a lot of my hair fell out all over my bed and in the shower which was a bit overwhelming to say the least but there was enough to style on my head and really you couldn’t tell all that much yet.  This time I have the vacuum out with the amount of hair that’s falling out.  Okay so here is how the treatment days go.  I pack the Chemo hats and take a ride with either my mom or my dad and we sit in the waiting room with everyone else that has their poison day on the same day and time as me.  The saddest part of it is that it’s always full when I go to the chemo room.  So many people needing to be treated and so many ports and so many IV's.  I hall all of my stuff to the back room where they give me my Lupron shot.  This shot is the one that is supposed to help me go into menopause so that the chemo doesn’t kill my eggs in a “fingers crossed” sort of way.  After taking the shot that makes me a crazy woman I get my port accessed.  Then I sit in the room with the other cancer patients while we all become loopy (ativan) and have funny conversations.  The pain doesn’t start right away.  It usually sets in with the feeling of the flu with being weak and my skin hurts and body just doesn’t feel right.  By the time I get home I feel like hell and from then on the pain and worst part of this whole process begins and that’s the chemo recovery.  I don’t eat much for 5 days and don’t remember much either.  I take the meds I need because my family is here to remind me but if it were up to me it wouldn’t be done correctly.  The days go by as a traumatic blur and the hardest decisions I have to make are whether to take this kind of med for stomach pain and not take the one for nausea or take the one that helps me calm down but then I can’t take the one that helps with severe stomach pain blah blah.  After the first 3 days of recovery my body tries to flush out the toxins buy sweating moving wastes through but this process is another major painful one that I wish didn’t come with chemo.  I feel like im passing glass and rocks in my stomach and i can hardly stand.  It gets so bad that it makes me sweat and shake until it passes or moves to a place that doesn’t hurt anymore. On or around the 5^th day my resting heart rate is over 100 and I can’t fill my stomach fast enough with food. I went back to work today and my brain is kind of there and kind of in the mind of an angry menopausal woman who keeps sweating.  Tomorrow will be better and from here is where I catch up from missing 5 days of normal life.  Once I get caught up then I have another treatment and it all starts over again.  I must say though I would love to be married and have kids and a great career with my husband by my side wondering what candles and furniture would enhance our house.  I can appreciate that amazing and blessed life.  I do myself have a blessed life with amazing people that surround me with love and support and a job that I love with many many blessings.  I do have a different respect for the life I saw myself living at age 31 though.  I did see myself married with kids and an established career but im here fighting for my life every other week balding, single, with breast cancer and unsure i can have children when all this is over.  All of the scars I ever had on my hands and feet have turned brown and my finger nails have turned dark.  My hair hasn’t fallen out in giant clumps but enough to cover my pillow every morning.  I think I’ll just shave it soon and bite the bullet.  My arm and leg hair hasn’t fallen out and my eyebrows and eye lashes are still there but not growing so I’m not waxing. When I eat I usually get hair in my food mouth or eyes and its gross.  I’m the least bit feminine and have become very human and flawed with no way to cover it up in the last few months.  In the whole superficial aspect of all of this I have had to chop my outer beauty completely and become my natural self with grey skin and no hair. Who would have thought? But after this I will appreciate and do appreciate all of my blessings.  I know everything happens for a reason. If i calculate it right I dont see the sun for 5 days after treatment and have treatment every other week for 4 months which makes it so ill miss 40 days of rain or shine for 120 days of chemo and if anything i appreciate every day I can go outside and feel the sun or cold on my face.

 overwhelming and not sugarcoated but REAL

A Mother's Perspective

Hi everyone,
I figured it would be good to share my moms perspective in all of this. 

"This is not all right.  That’s what I have to say about my daughter having breast cancer.  It’s just not okay.  Yes, I am certain that she will fight it and have a long healthy life with a family and a great career she loves with all the adventure that comes with it but having cancer is never okay.

Getting to the point where Carina started chemo was absolutely indescribable.  There was so much fear, emotion, disbelief that we held each other through that the day of chemo was just the apex of the huge mountain we had already climbed in a few short months. Days have all blended together for us.  Her first of eight chemo days I couldn’t make my mind realize that I was on my way to Santa Monica again to voluntarily deliver my beautiful baby to have a needle stuck in a port surgically implanted in her chest and let red and white poison drip directly into her vena cava that shoots into her heart.  My role in Carina’s fight has been to research the disease, drugs, chemo agents and their effects, side effects, and exactly why she needs these to survive.  At least we could explain how and why she went to near death and back over the next four days.

Carina was ready to bolt out the door just before we started after a weekend of pain and fever post egg retrieval.  Doctor Fischer assured us and took us back to the poison room.  Carina’s oncology nurse gave her a shot of Ativan that sent her to the moon.  We got her chemo hats on her and off we went.  A series of shots and IV’s went into her for a few hours with several changes of ice hats, a long list of medicines she had to take for the next three days, and so much insurance garbage to sort through.  I couldn’t believe we were heading home and it was in her.  Immediately the Adriamycin and Cytoxin attacked her intestinal system.  Nausea ensued like you wouldn’t believe.  A few hours of fighting it led into two days. Once she calmed down enough to sleep the chemo took over her little body.  She was this waif of a woman lying on her side in her bed and could look up with only enough energy to say “Hi mama” and back to sleep. Not knowing that one day had turned into the next or whether it was day or night, she just existed.  On the third day the nausea subsided a little but the abdominal pain, head ache, and emotional roller coaster started that were all menopause symptoms from the Lupron.  The chemo affected her bones, mouth, eyes, head, and skin. She was truly taken to hell and back and I couldn’t stop it.  Feed her and comfort her was all I could do.  On day 3 her roommate text me to say she wasn’t doing very well.  I was already on my way there.  That night she rested her head on my stomach while I tickled her hair for hours.  Her resting heart rate was close to 100 because her little body was fighting to clear the poison out and start recovering the cells chemo had killed.  She woke up and asked what time it was and her only concern was that I needed to sleep.  That’s my girl.

The next morning I knew she was going to make it and that the poison wasn’t going to kill her because she called me in a rage over something that, in retrospect, wasn’t worth the energy.  I smiled on the other end knowing that the next two weeks were going to be good.

Thursday is the next “treatment” or what ever we call it.  Like everything in this process that is just not okay, it’s easier to take when we know what to expect.  We have heard countless stories of chemo infusions and how the first one is the worst, or the second one is the worst, but we live this as if Carina is the only person dealing with it because it is her fight and hers alone.  Over the past two months I have researched every aspect of this disease and it’s treatments.  It’s been like a required course for a degree that everyone dreads but we have no choice.  I’m shooting for the best outcome for Carina with the last treatment somewhere in July."

-Lari Bright

3/13/12