NY Times Article

Here is an article from The New York Times on insurance companies and the games that they play with people's lives.

Battling for Health Coverage as Cancer Spreads

Today Cody and I received and email from his insurance company that I'm covered starting 2/1/2010 (I loose my coverage 1/31/2010). We are so lucky to have decent heath insurance coverage!

Routine

I'm not sure what to write about today. Cody and I are starting to settle into routine that passes for normal. We head to Houston and his parents house on Sunday afternoons, spend the night, then head down to MD Anderson Monday morning where I get my blood drawn, wait a couple of hours, then get chemotherapy. After my treatment Cody drives us home to Austin while I sleep. I have not had too many side effects from the chemo so the ride home has been uneventful, except for a couple of times that I got nauseated from the traffic. Stop and go traffic is not to kind to the tummy but I have anti-nausea pills that really work. During the week while Cody is at work I plan our meals, grocery shop, do laundry, and work out. It is normal. Monday I have my 5th treatment, almost halfway done with the Paciltaxel, and as the drug builds up I'm starting to have more side effects or allergic reactions to the drug. Like I've said before, I'm loosing my hair; but I have so much freaking hair that it is taking a long time to all fall out and what is left keeps growing - go figure. I also have to keep shaving my legs which is a bummer. My skin is supper sensitive and I'm breaking out in a rash on my head, chest and back area. My head itches. It really itches. I never thought my head could be this itchy. I am allowed to take Benadryl which helps with the rash, and has stopped it from spreading anymore. I'm going to stop washing my head with shampoo, not sure why I'm still doing this anyway, and start washing my head with the soap I use on my face. Maybe I'll get really crazy and use the same moisturizer on my head, or just use Eucerin body lotion.
Today it is raining and freezing so I'm not going to be able to get outside an exercise, but I can use our treadmill if I feel like working out. Wednesday I took my first exercise class since I've been diagnosed and I'm still a little sore from doing all of those lunges. WOW I feel out of shape!! I'm so glad that the triathlon is in April. It gives me time to get ready. I'm also paranoid about doing too much and loosening the stitches on my port causing it to flip or get dislodged. So I have to wait until February 10th to ride my bike or put any weight on my right side. Ridiculous. Not overdoing it is the hardest part about all of this. I want to get out and do stuff but have to wait. The hardest part of all of this is waiting.

Photos and Things

I met with Dr. Gonzales yesterday and she gave me the okay to participate in the triathlon on April 11th; my goal is to finish.  Who else can say they finished a triathlon while undergoing chemotherapy??  I'm really excited.  It gives me a tangible goal to work towards, and is something that Cody and I can do together.  Check under the information link for information on the triathlon.

Here are the pictures that I've been talking about posting.

Outdoor garden area on the second floor of the Mays Clinic at MD Anderson; they have nice tables and chairs and Cody and I like to get some sun and get away from it all between appointments.






Cody catching some sleep in the sun.  It is really hard being the caregiver.

Before I really started loosing my hair.

Receiving chemo on January 19th in my Jack and Adams t-shirt, I think they gave me too much :)




My lovely pre-op outfit; nothing fits because apparently everything is made for giant people.  Good think I'm healthy and won't be needing the compression leggings.  Next time they need to raid the closet at Texas Children's.

My hair is starting to fall out now - check out that bald spot!!  Very sexy!  Cody and I are resting outside before my 4th chemo treatment.

My sparkly shoes!!

Hair Horror

I'm still harping on loosing my hair, sorry but it is really traumatic. Especially when it won't go ahead and fall out already; I have little itchy bald spots all over the sides and back of my head, and the top looks fine. I guess this is how thick hair falls out, one agonizing piece at a time. I look like I should be in the army with my high and tight - except for the bald spots. The bald spots are growing, but I have so much hair to loose that every morning it is painful to look at my pillow and I'll probably end up using the entire lint roller before I go home. At this point I wish it would all fall out and be done with it. Then maybe I wouldn't feel so freakish. Right now I’m not even sure how to cover my head, I mean I still have some hair no matter how strange it looks, and every time I touch my head hair falls out. I need to decide what I’m going to do at the hospital tomorrow. I don’t think I’m going to wear a wig and the instructions for how to tie a scarf make me look eighty. Right now it seems that my struggles are about how to present myself to the world, rather than how to get well. I know how to get well. I don’t know how to look well for everyone else; and the answer isn’t to put on a wig, some makeup, and pretend that I’m someone else. That is just too painful. Oh well something to think about on a Sunday afternoon. Tomorrow I see my doctor for the first time since starting my chemotherapy. I hope that she can give me something for the congestion that has taken up residence in my chest and sinus cavities. I’m getting tired of bloody noses. It would also be nice if she could let me know if I can do the triathlon that I want to do in April. That will give me something to look forward to, something to train for. Right now I feel like I’m getting fattened up, for what I don’t know, but puffiness is not very becoming on a half-balding person!
I'll post pictures tomorrow or Tuesday. The wireless doesn't work here and the pictures are trapped on my laptop.

Sleeping and Exercise

I've been having problems sleeping the past few nights. I'm not sure if it is the chemotherapy making me restless, or the fact that I'm not exercising as much as I’m used to. So this morning I went for a 2.5 mile walk along a trail near the house. It was a nice blacktop trail, and it felt great to get outside and get some sunshine. I miss the sunshine in the winter time. On my walk this morning it was all I could do to not run flat out, so I walked really fast. I’m taking it easy, one step at a time. If I feel okay later on today I’m going to ask my doctor on Monday if I can do a triathlon between my Paciltaxel regime and when I start the F.E.C. combo. If she will let me the race is April 11, 2010 at Aquarena Springs in San Marcos, TX. Cody and I participated last year and it was beautiful. You get to swim in a gorgeous spring fed lake, clear water, and the start is individual so no chance of getting tackled by another swimmer. The bike is an easy out and back, and the run is beautiful along the San Marcos River. If I do get clearance to do the race I will need a cheering section!

Lost Hair

We all knew that this day was coming, the day that I would wake up and there would be a bunch of hair on my pillowcase; the day that hair started to fall out. Well today is that day. I thought I was prepared, no big deal, what's a little hair? So I got a buzz cut. I went to a salon down their street from Carolyn and Reagan's house and they did it for free. On my walk back to the house I got called a dike - nice...some men are such jerks. It will grow back. Yes it will grow back, but is depressing and sad none the less. It is not so much losing the hair that makes me sad, but the realization that I'm sick. Healthy people don't loose their hair in clumps; they don't touch their head then have a hand full of hair. Hair is an accessory and I feel like I've lost my favorite pair of earrings, or left my wedding rings at my in-laws house. I do need to start wearing makeup though, I'm starting to look like I should beat up men and get free drinks at clubs in Montrose. Now that I have my port and am losing my hair my transformation from a normal, healthy, 33 year-old to cancer patient is complete. Now to transform back!

Breast Cancer Cult

The approach that I have taken to my cancer is the intellectual approach. Find out as much as you can about what you are facing, face it, and move on; a simple yet difficult creed for some to follow. Most of the women that I have met are happy to be part of the "Breast Cancer Cult." They are responding to their problem by getting mad and emotional, like cancer specifically targeted them. Getting breast cancer makes them automatically part of the cult and a card carrying member of the sorority that a few get to join. Ok, fine, but that is not me. I can tolerate you; please don't count me in as one of your followers, a member of your cult. This is mine to face and I will deal with it as I see fit. Just because I don't subscribe to that stuff doesn't make it any less real. Like my uncle Jim says, “I have to filter their stories and find my own.” Great advise. The number of women who have told me that they had a mastectomy because of the chance that they might get breast cancer is disturbing (80% if they have the gene). I see it as a cry for attention - "Hey, look at me, I have the breast cancer gene so I chopped of my boobs!" If I had known that I would get cancer, I still would have done nothing differently. We are all dealt our hand out of the same deck of cards, life. Chopping off boobies because you might get cancer seems a little extreme. Who decided that boobs are what makes a woman anyway? I guess because I didn't have a Barbie doll for a mother I don't see myself tied up in images; or maybe I've already dealt with my image problems. Never the less, what is it like to live in fear of your own body?
Cody and I are in Houston and I'm staying until next Monday - thank you Carolyn and Reagan. Tomorrow I have my third round of chemotherapy and on Wednesday I'm getting my port - yeah no more digging in my veins. I'm not sure if I'll get a chance to post but will as soon as I can. We are taking pictures so I'll upload those as well.

Sparkly shoes; with my new Sparkly shoes I can be a Pixie and light through the halls of MD Anderson. They remind Cody of the “Wizard of Oz” only silver, not red.

Boo’s death. My grandmother died this week; people are heading to South Carolina for the memorial service on the 23rd. I’m not sure how I feel about my grandmother, yes I love her but she wasn’t the warm and fuzzy grandmother type. She was a woman who was divorced in the 1960’s and worked the rest of her life. We didn’t spend a lot of time with her, but when we did it was okay. I have good memories of Palm Springs.

Mouth sores. I’m starting to get sores on the inside of my mouth. Mouth sores are a side effect of chemotherapy, and anyone that has ever worn braces will know what I’m talking about. It feels like the metal is cutting me in all of the same places; for some reason the sores are appearing in the same places that I had sores with my braces. I wonder if it is because the tissue there is already traumatized and subjected to easy tearing and more trauma makes it worse. If the don’t clear up soon I’m going to schedule an appointment with the dentists at MDA. They should be able to help.

Insurance

This week I resigned from my job to concentrate on my main job of getting well. Now the fun part of the process begins, changing insurance companies. (Queue evil music) The game now begins on denial of all claims for pre-existing condition clauses; then the insurance companies sorrow as they discover that yes they have to cover my cancer. HA! That is what all of us pay you to do. Cover us when we get sick! Imagine that, a health insurance company might have to actually cover someone when they get sick. Cody and I are very lucky in the friends we have who are able to assist us in navigating the insurance nightmare. We have a friend that lives in our community and is a patient advocate by trade, and has offered to help us understand the entire insurance mess. I know that there are a lot of arguments against national health insurance, primarily being that it would “ration” care. Healthcare in this country is already rationed. It took me 4 months to get an appointment to with my primary care doctor. Healthcare is already rationed. The only reason I’m at MD Anderson right now is that we have family and friends who made phone calls to their contacts inside the hospital to get me in. If it were not for their efforts I would be waiting for my appointment in March. Healthcare is already rationed. If you can’t pay, and are not a citizen of the state of Texas, you will not get care at MD Anderson. It does not matter if you live 1 mile across the state line in Louisiana, you will not get seen if you can not pay. I’m not advocating any type of healthcare system, all I know is that the system we have in the United States is broken; and most people don’t see it until they get sick. If Blue Cross had been able to get out of paying for my care they would have, they tried to get out of paying for it claiming it was a pre-existing condition (which wasn’t even diagnosed until I was under their care plan). If they had won on that argument, Cody and I would be bankrupt. Just like that. It would cost $120,000 per year to treat me at MD Anderson. No one should die because they cannot afford health care, and no one should go broke because they get sick.

Drama

The trip for chemotherapy was a down and back trip to Houston, left Monday night and home by 9 pm after my treatment.
The drive down to the Medical Center was a mess; the trip that normally takes 40 minutes took an hour and 20 minutes. Good thing we left early! Once we got to there I had to wait in line to get my blood drawn; every time that I have chemotherapy I have to get my blood drawn. They do this primarily to ensure that my blood count is not too low to receive treatment, and look mainly at my red blood cells and hemoglobin, white blood cells, and platelets. I’ve had so much blood drawn now that I didn’t even feel it, maybe because of the Ativan, but I think I’m getting used to it – sort of. Cody and I go and sit outside on the rooftop garden in the sun, it really feels good! He eats a salad from the café, but I can’t eat because I have to take the RAD001 on an empty stomach. We sit outside as long as we can before walking the half mile to the main building for my treatment, specifically the 10th floor. The walk over is nice, it is on a huge sky bridge with great views of the landscaping and streets below. The main building makes me feel sick. It looks and feels like a hospital, while the Mays Clinic (where the breast center is located) is comfortable and airy like a hotel. I would much prefer to have my appointments at the Mays Clinic, and should from now on. I check into the clinic and let them know that I’m a “hard stick” because of the size of my veins. We are finally called back into the treatment room, and it is definitely a hospital room. The nurse comes to start my IV, and discovers that my right arm is no good – duh. My veins are still collapsed and the vein used for my treatment last week is still healing. So she goes for a vein on the inside of my left arm, half-way between my wrist and elbow. Now if you have ever had anyone DIG around for a vein you know what I’m talking about – IT HURTS!! She digs for about 5 minutes and finally finds the vein, then yells “don’t move!” Cody slumps against the wall and onto the floor. All hell breaks loose in my room, nurses flying in and out attending to Cody, the IV being tapped onto my arm like athletic tape. What a mess??? Julia and my other nurse Silvia come into the room and get the other nurses to calm down and focus. They get my RAD001 pills, and start the Paciltaxel. My arm starts to burn like it is on fire! Cody goes to get the nurse, and she has to turn up the Saline Solution to dilute the medication because my veins are so small and the Paciltaxel is burning my inner lining of my vein. The treatment is over, we ride the shuttle back to the Mays clinic, and head back to Cody’s parents. Cody needs to eat and I need to change clothes, sweatpants and sweatshirt for the drive home. I also snag a fleece blanket and travel pillow – so nice. At 6:30 pm we begin the drive back to Austin. I do okay, until Elgin and start to get carsick; but don’t barf and make it home in one piece. We are greeted by a very happy kitty who wants to play with her string, we eat, and finally get ready for bed. Exhausting day.

Diagnosis (DX)

I've been asked how I found out I had cancer, specifically what made me make an appointment. It was simple, time for annual exam, so I scheduled an appointment with my OB/GYN Dr. Mills.
December 8, 2009
I show up at my doctor’s office and wait, a lot longer than usual, finally the nurse calls me back. She lets me know that Dr. Mills has been called to a delivery at the hospital and I can either wait or reschedule. Since it took me four months to get this appointment, I decide to wait; and just as the nurse is telling me that she will be canceling the rest of her appointments for the day Dr. Mills walks in the door. As soon as she gets settled she comes in and begins my visit. She is really excited that I've lost so much weight (about 40 lbs since October 2007) and I'm excited to find out that I don’t have to have a pap smear this year – bonus. During my breast exam Dr. Mills finds a small lump in my left breast and schedules an ultrasound the next day. Okay. I tell Cody. Maybe it is a bruise from me whacking my chest in a triathlon - entirely possible. But deep down I know that something is wrong.
December 9, 2009
Cody picks me up from work and we head to the women's imaging clinic for my ultrasound. The waiting room is really weird, full of 65+ women and a couple of really obnoxious drug salesmen, one of whom is waiting for his girlfriend to finish her mammogram. I’m called into the back and the rest is kind of a blur. I remember the woman giving me the ultrasound, the mammogram, and the radiologist – I do not like her. She is loud and pushy, walks with a tilted head, and has a habit of talking down to people. In fact, she informs me that if I don’t get a biopsy right this minute that I’m going to die. WHAT?? You don’t say that to people, especially without the pathology results of the biopsy. While I’m lying there, in horrible pain and covered in blood from the biopsy, she makes me an appointment for the next day with a surgeon – again without knowing the results of the biopsy!! I spend the afternoon and evening on the phone with various people talking about what this means, what to do next, etc. I get no sleep.
December 10, 2009
In the morning I receive a call from the radiologist that I have cancer. I ask her to mail me the results and to send them to my doctor. Now back on the phone; determined to get into MD Anderson.

The radiologist was a joke. I had to request the pathology report be sent to my doctor several times, and finally just gave up. She will get the information from MD Anderson. Cody and I have had numerous discussions about what happened and why. How hard it would have been to make rational decisions with the limited information we were originally given? What if we didn’t have access to our family and friends who have tremendous knowledge in the cancer field? What if we went to the surgeon with the mentality of “cut now, diagnose later”?

Whirlwind

For those of you who don’t know I was diagnosed with breast cancer on December 10, 2009; specifically triple-negative breast cancer. This type of breast cancer does not respond to the hormones estrogen (ER) or progesterone (PR), or to the protein known as HER2. Other characteristics of this type of cancer are that it tends to be extremely aggressive and has a high rate of reoccurrence. My cancer is in my left breast, on the lower right side, approximately 3.5 cm from the center. It is a hard (very hard) knot about 1.5 cm in diameter.

Once I received my diagnoses, Cody and I decided that I must get to MD Anderson (aka MDA) in Houston for treatment. It is the “best in the world” – if you can get in. After spending an anxiety and cursing filled week I finally received an appointment, thanks to the herculean efforts of family and friends.

I soon found out that getting into the hospital was the easy part, now for every test imaginable. In four days I had a repeat mammogram (Gumby boobs), repeat ultrasound complete with a lymph node biopsy (ouch), blood draw, chest x-ray, CT scan (complete with barium solution and irradiated iodine), bone scan (more irradiation), and an echocardiogram. The bone scan and echocardiogram were kind of cool since I could watch the exam on my own screen; Cody got to watch the echocardiogram.

December 29, 2009
After the initial mammogram and biopsy on December 28th and 29th I met with my surgical oncologist – Dr. Isabella Bedrosian. She is a tiny woman, full of energy, exuding confidence, and I really like her a lot. She was very straight forward and let me know exactly what course of treatment she thought best, and most importantly why it was the best course of treatment. I learned that my cancer had spread to at least three lymph nodes. After meeting with me she called Dr. Gonzales, now my medical oncologist, and persuaded her to come into the office on Tuesday and see me. Once the appointment was made I began my dash around MDA taking almost every test imaginable.

January 5, 2010
Cody and I met with Dr. Ana Gonzales-Angulo; another tiny woman with tons of energy, radiating confidence and positive energy. She let me know that my cancer is Stage II, and has not spread to other parts of my body. This is good. She also asked me to be part of a clinical trial that is helping to develop more treatments for triple-negative breast cancers. This type of breast cancer has only been identified within the past few years and there are few targeted therapies and treatments.

So far I’ve completed two clinical trials, and am taking part in another. The two that I have completed involve using saliva or blood to identify breast cancer, before it can be detected on a mammogram. I got to chew gum and spit into a tube for five whole minutes. When else can you chew gum and spit for 5 minutes? The other test involved more blood, but heck what is 2 more tablespoons??

Yippy!! My insurance allows me to participate in the clinical trial investigating treatment options. In the trial I will receive the “standard care” drugs, in addition to the investigative drug (if I get randomized by the computer for the study drug), additional tests for monitoring my treatment progress, and my own research nurse – Julia. Julia is great. She is there to help Cody and I not only navigate the maze of treatments, side effects, etc. but also is there to help with access.

The clinical trial (aka CT) involves the investigation of RAD001 (not a real drug name) and its ability to effect the signaling pathways of breast cancer tumors identified as triple-negative. The drug was recently approved by the FDA for use in renal (kidney) cancer, so I’m not trying a drug that is untested. In order to see if the drug is working they have to take another biopsy of my tumor before I start chemo, and then another biopsy of the tumor 48 hours after my first chemo treatment.

January 6, 2010
Time to start the study – I’m going to be a trial human, someone who may help someone else down the road; but first I have to get through another needle and another biopsy. Cody and I drive back to MDA in the early morning. I take 1 mg of Ativan for my nerves on the way and check-in for my test. Julia meets me in the waiting area in the back and I’m assigned to a room. After all of the pre-biopsy stuff, my tiny room fills with doctors – there must be at least 5 of them, all wanting some of my cancer cells. My cancer is hard as a rock, seriously like hard candy, and they have to stick me repeatedly and move the needle in and out to get any cells. Have I mentioned how much I HATE needles?? This is by far the worst thing yet, but the doctor holding my hand (I’m in the big time, no nurse for me!) is helping me concentrate on my breathing, ala Lamaze, and it is over before I know it. Now for another blood test…and my veins have collapsed…finally get the blood out of the other arm.
Cody and I have had enough of the hospital for now, we hop on the train and head to downtown Houston and meet my mother for a tour of her office and lunch. On the way back from the hospital we stop at the Houston Museum of Natural History and check out the Faberge exhibit.
Back at MD Anderson the waiting begins. I really want to receive the study drug, but am worried that the computer will not pick me; so much has not gone my way in all of this. I’m a nervous wreck as I check-in for my first “infusion” therapy session (aka chemo); and my orders are not there – strange. Then I get a phone call from Julia. She has been waiting 2 hours for the results from my pregnancy test, and it is negative – good. I also got randomized into the study drug group – YES!!! This means that for the next 12 weeks I will receive 6 pills of RAD001 in addition to the standard therapy dose of Paclitaxel (aka taxol). Cody and I are lead back to the treatment rooms – like a mini hotel room with a TV, DVD player, bed, chair and table, sink, and room service. Yes they have room service, free with no tip. The nurse has a really hard time finding a vein, mine are really small, she finally gets one but has to use a 24 gauge needle (the smallest that they have). After the 2 hour treatment Cody drives me home. I feel okay, just a little car sick, and my body hurts.

January 7, 2010
We are staying in Houston. No appointments at the medical center, but I feel like I’m getting the flu and Cody is really tired. In the afternoon we head out to HEB and by the time I get home it feels like I’ve flown around the world – time for a nap.
The Longhorns lost. Oh well. I was only able to stay up for the first quarter anyway.

January 8, 2010
You know you have spent too much time in a place when you go to check in and the receptionist greets you by name. My last biopsy for 6 whole weeks! I’m so excited I can’t stand it, even with the Ativan I’m having a hard time containing myself. I let Julia know about how difficult it was for the nurse to find a vein on Wednesday, and she makes a few calls – determined to get a port placement. A port is a devise placed under the skin that will allow instant access to my veins, and allow me to save the poor veins in my extremities. It is placed under anesthesia, but is less painful than being constantly stuck! Once again doctors descend on my room en masse. The same doctor holds my hand, but this time they only have to stick me once. My cancer appears to have responded to the treatment by softening up a little. Good news to end the week.

January 9, 2010
Today I’m cutting off my hair, and if I can donating it to Locks of Love. Karissa is going with me.