One Single Mama's Healthcare Crisis

We all know the health care situation in America is, for the lack of a better term, messed up. Half of the people who need actually need health care don't have it and can't afford it. I'm one of those people who needs health care. I certainly can't afford it, and unfortunately, most people don't want to insure me. Since that law that will allow people with pre-existing conditions to get insurance doesn't go through until 2014, I'm screwed.

I recently applied for medicaid thinking there was no way I could get denied. My only claimable income in child support, which is $10 less than what my rent is. I do have a small business, but the income for that is so sporadic, there isn't even a way to claim it, and it's certainly not enough to cover health insurance. So since my child support barely covers my rent and I have other bills to pay (electricity, transportation, etc.) then I should get medicaid, right? Wrong. In Texas you can only make a whopping $163 per month for a family of two to be approved for medicaid. What!? Homeless people who stand on the side of the road asking for money probably make more than that. Texas has basically made it so that no one can be covered by medicaid, unless you are a child or pregnant.

Their logic boggles my mind. Yes, low-income children and pregnant women should be covered, but as soon as you have a baby you are no longer covered under their care. What happens when these children's parents can't get the care, preventative and otherwise, that they need? Children need parents. There's no argument there. If I don't figure out a way to get health insurance or to be seen by doctors then there's a chance that I could die, and that would leave my son without a mother. Is that better than raising the monthly income allowance to a rate that is more feasible?

The law states that each state can make their own medicaid guidelines. In Massachusetts a family of two can make up to $1,200 a month. In California they practically give insurance away. What gives, Texas? 

Here's the thing. I had stage 3 cancer. After I had my 2 surgeries in 2009, they told me I had a 50% change of recurrence. In order to make sure I don't have any cancer in body, and that they catch it early if I do, I have to have C/T scans approximately every 6 months. I believe that's for the first 3 years, and then I can move it to once a year. If anything abnormal was to ever come back on my C/T scan then I would have to go in for a PET scan. Now let's talk cost. Me, a single, uninsured, practically 300% poverty level female, has to pay approximately $6,000 out of pocket for a C/T scan. This is the price that MD Anderson sent me for an uninsured patient (which means it costs even more if you have insurance, but if you have insurance then they pay for a lot of it). That's just the C/T scan. The last one I had took about 20 minutes because they just do my head, chest, and neck. Now if it does come back abnormal and I have to have a PET scan it would be a full body scan and take about an hour. The average cost of a PET scan is about $7,000. If something were to come back abnormal that would ultimately mean I would need a surgery or some kind of radiation or chemo. My two surgeries in 2009 (without any chemo or radiation) cost roughly $80,000. What's a person to do in this situation?

I have done copious amounts of research. I've contacted cancer societies and google searched until my eyes almost bled and the answer is always the same, there's nothing I can do except rack up insane medical bills that I will only be able to pay if I win millions of dollars in the lottery, but that's a catch-22 because I don't even have the extra money to PLAY the damn lottery, and if you don't play then you can't win.

The real kicker? There's an organization in Austin that gives working musicians health insurance. It's a wonderful organization and I am glad that it's around for people who need it, BUT WHAT ABOUT ME!? Where's the organization that can help me!? The only thing I want in life is to be able to stay alive so I can watch my son grow up, and so I can do all the things that I have ever wanted to do. Texas would  apparently rather see the poor people die. I'm lost. Really lost. If anyone has any ideas or suggestions that I might not have already thought of, I welcome it with open arms.

Happy 1 Year Anniversary Cancer

I remember this day last year clearly. I was 36 weeks pregnant. Just the day before I had gone and had the mole on my chest biopsied. They told me that the results would come back within the next week. I certainly wasn't expecting a call so soon. I had just started eating lunch when a number I didn't recognize called me. I never answer the phone if I don't know the number. I normally don't even check my voice mail right away, but I did that day. The message was urgent, her words made me sick to my stomach. They went something like "We got your pathology report back and Dr. Kaiser wants you to come in immediately. We can see you in an hour and a half." I knew that if it was nothing then they wouldn't need to see me so urgently. I called back, tried to remain calm. I couldn't. I begged her to just tell me if I had cancer and she told me that I just needed to come in. I knew what was happening. I called Jason, crying, hyperventilating. I told him emergency, he had to come home now, we needed to go to the doctor.

We got to the dermatologists office. They gave me the paper gown to put on. I still hadn't been told anything. Finally after what seemed like forever, the doctor came in. I started crying before the words even left his mouth. Then he said it. Cancer. My stomach sank, I couldn't swallow. I felt dizzy, so dizzy that I had to sit down on the cold tile floor. When someone tells you that you have cancer the thoughts that immediately enter your head are "I'm going to die". I thought I was going to die. I couldn't die, my baby wasn't even born yet.

My doctor checked the rest of my skin for anything unusual. Nothing. He told me the next step was to see a surgical oncologist. He called and made me an appointment with one for that week. I didn't realize the extent of the surgery I was going to have and I was thinking maybe they could just put me in a twilight sleep and do it quickly while I was still pregnant. Nope, I had to wait.

Those were the longest 4 weeks of my life. Not only was I waiting to give birth, and in the middle of the hottest summer yet, but I was waiting to see just how bad my cancer was. I was sleepless anyway, but I would stay up until 4am, examining my skin, feeling all my lymph nodes until I had convinced myself that they were all swollen or that cancer was taking over all of my skin. Then one night I really did feel something. Right on my left collar bone, a marble sized lump had appeared. It hurt. I just kept feeling it and feeling it. I woke Jason up at 4am crying hysterically telling him I had a lump and I just knew it was cancer. I spent the entire next day with an ice pack or rice sock on it hoping it would go down.

6am on July 5th, 2009, I went into labor. It had been a couple weeks since I had really thought about cancer. I had trained myself to forget. I was focused on Elijah (although at the time I didn't know it was Elijah, or even a boy). At 10:52pm he was born that night and I figured I would wait couple of days until I called to schedule my surgery. I just wanted time with my son.

12 days later I went in for surgery. It was just a day surgery so I didn't have to stay overnight. It was also my first surgery ever. It was pretty surreal being in my room and administered an IV and then waking up in recovery. I couldn't feel anything, but I looked down and I had a huge bandage covering my chest and a drainage tube.

Again, waiting, waiting, waiting. I think it was about 7 days later that I went to get my drainage tube out. My surgeon took the tube out and then sat down on his stool with my file and started talking. The cancer was found in one of my lymph nodes. "NO!" I thought. I had convinced myself that I was fine, no more cancer, and here he was telling me I was wrong.

I was referred to an oncologist at Texas Oncology. From there I was referred to MD Anderson. I went to MD Anderson for my first visit and then a week later was back for surgery to remove the rest of my lymph nodes from that area to make sure there was no more cancer.

Recovery from the 2nd surgery was the worst. I am still in pain from it. Luckily all my results came back clear. So now it's just wait and watch.

In the end I was diagnosed with Malignant Melanoma stage 3. They told me I have an over 50% chance of it coming back. The scary thing about melanoma is that it's the only cancer that can come back anywhere in your body. Anywhere.

This 1 year anniversary is important to me because not only does it mean that I am kicking cancers ass, but every year it doesn't come back means that if it does come back, it won't be as aggressive than if were to come back the year before.

I will always be at risk for another melanoma. Elijah will always be t a higher risk for melanoma.

I am just now starting to feel not so terrified of being outdoors for more than 2 minutes. I always wear sunscreen. I generally wear a sweatshirt, but it's really starting to get hot.

It's been a hell of a ride. Shit, I'm crying just writing all this. It's emotional. This has been hands down the hardest fucking year of my life, but I've gotten through it. I managed to raise a beautiful baby boy while going through all of this. What doesn't kill me will only make me stronger, it's true. I don't think anything can bring me down at this point. I might just live forever.

fuck cancer.

I talk about cancer a lot. I think I talk about it so much because it helps me release some of my fears and frustrations. Not a single day goes by that I don't cry at least once. I cry because I am scared of what's going to happen, I cry because I look at Elijah and I love him so much, I cry because I don't want Eli to ever have to go through what I am going through, I cry because I know he has an increased chance of having melanoma in his life because I had it, I cry because I think why me? Why did this have to happen to ME!?
I am jealous of people that aren't scared and can leave their house in a tank top without a second thought. I get mad when people I care about intentionally lay out in the sun or go to a salon for a tan. I want to scream at them, put them in my shoes for a few days to see how I feel. I can no longer enjoy a nice sunny day cause I'm too fucking scared to go outside. I am trying to plan my summer wardrobe around long sleeves, pants and hats. This tattoo that I was so excited about that I took the train to Providence with a friend for is ruined. Every day I look in the mirror and all I see is broken. Scars everywhere. I feel ugly, damaged goods.
I feel alone, lonely. All of my best friends that know and understand me are so far away, but they don't even understand what I am going through or how I am feeling. But they are there. They've always been a shoulder to cry on. I miss them so much, the friends that know saying "don't worry about it" or "don't be scared" isn't going to make it better.

My body got cancer and all I got was expensive hospital bills and a fear and depression that will never go away.

Part of me feels like I should keep telling myself I will get through it, but then part of me feels like I should prepare myself for the worst possible outcome.

How to be sun safe

The warm weather is fast approaching which means shorts, t-shirts, tank tops, and bathing suits. The less clothing you wear means the more skin that is exposed to harmful UV rays, and take it from me, they can do some damage.

I've been having some major anxiety lately about the warmer weather. I don't want to be scared of the sun or going outside but I can't help it. Unfortunately for me Texas gets really hot, triple digit hot, so when I do have to go outside it's almost impossible to completely cover up with pants and long sleeves. A little bit of sun is good for you, you just have to make sure you get that sun safely.

First and foremost I want to urge my readers to not sit out in the sun for the purpose of tanning. Please, don't go to a tanning salon either. UV rays are dangerous. Most people don't think twice about it, I know I didn't really ever think that I might get cancer and how much my life would be turned upside down, but I did get cancer, and my life was turned upside down. I was never really a tanner either. Sure, I would sit out in the sun without sunscreen on hoping for that "healthy glow", but it turns out that glow is far from healthy.

Every day I wake up and worry about whether or not I am going to live to see my son grow up. It scares the shit out of me that I might miss his life all because of this disease that I can't control. I have to sit here and wait to see if it's going to come back or if it's going to stay away, and the scary thing is that if it does come back it can come back anywhere in my body. Anywhere. Brain, liver, kidneys, heart, stomach, breasts, uterus. ANYWHERE. Melanoma is a beast. It's a terribly dangerous cancer that people can do things to prevent! Some people are much more likely to develop a melanoma despite their best efforts, but some people develop melanomas that could have been prevented if they had just taken the proper precautions.

I found out I had melanoma when I was 36 weeks pregnant. It turned my entire world upside down. This joyous time in my life suddenly turned into this anxiety filled nightmare. I had trouble sleeping, thoughts racing, I cried a lot, and developed "cancer brain" (which I still have) which made me think that any bump, bruise, spot, pain, or itch was cancer. The worst part was that there was nothing I could do until I gave birth. That was the longest 4 weeks of my life. 4 weeks of not knowing exactly how bad it was or if it was anywhere else or what I was going to do.

FInally Elijah was born. I was able to forget cancer for a few days, but 12 days after I gave birth I went in for surgery. It sucked, but it could have been worse. I was feeling confident at that time that the cancer wasn't going to have spread, but it turns out I was wrong. A couple weeks later I got the dreaded news that they found a small amount of cancer in one of my lymph nodes. Small amount or not, because they found it in my lymph node I was automatically stage 3. There are only 4 stages to cancer.

I had surgery #2 in September and luckily that news was good news, they didn't find it anywhere else, but because I am stage 3 that puts me at a higher risk of the cancer coming back. Over 50%. I don't like those odds at all! Next month is my one year anniversary of being diagnosed, which means I have 4 more years until my chance of recurrence goes down to 1%. So, be as sun safe as you possibly can. I don't want anyone to have to go through what I went through, and continue to go through, if they can prevent it even a little bit. 

How to be sun safe

Always, always, always wear sunscreen. Even if you plan on being in the shade you will still be exposed to UV rays. Make sure you put sunscreen on your baby too, children are even more susceptible to skin cancers these days, especially if a parent or immediate family member has had any kind of skin cancer.

Make sure that you are wearing a safe sunscreen. I stay away from Octocrylene, Octinoxate, Oxybenzone, Octisalate, Homosalate, Avobenzone, and of course all PABA sunscreens. These sunscreens are harmful and some of the ingredients have been know to cause cancer. I'm trying to stay away from cancer, why would I use something that could cause it!? The best resource you can use to find safe sunscreens is the Skin Deep Cosmetic Database. I use that website to check out all of my beauty and skin care products for my family. You want to look for sunscreens with a rating of 0, that's the safest. 1 and 2 are acceptable, but I wouldn't use anything that has a higher rating than that. I have compiled a list of the 10 safest sunscreens for you and your family:

1. Badger Sunscreen for Face & Body, SPF 30, Unscented

2. Loving Naturals Sunscreen, SPF 30+

3. Heiko Kids 40 SPF

4. thinkbaby Sunscreen, SPF 30+

5. Trukid Sunny Days Face & Body Stick, SPF 30+

6. Beyond Coastal Lip and Face Screen, SPF 30

7. Purple Prairie Botanicals Sun Stick, SPF 30

8. Lavera Sunscreen Neutral, SPF 40 

9. Soleo Organics All Natural Sunscreen, SPF 30+

10. All Terrain TerraSport Performance Sunscreen, SPF 30

 Wear sun hats! A sun hat with a 6" wide brim will offer the best protection. Make sure you are putting sun hats on your children too!

If possible, avoid the sun during it's peak hours between 10am and 4pm. I know this is really difficult, especially with children. If you can't avoid the sun during these times make sure you wear sunscreen and sun hats and spend as much time in the shade as you can.

Coolibar is a fabulous website that has all sorts of sun safe gear and clothing. I am looking into hopefully getting a sun tent and umbrella from there. There gear all has a sun protection factor of 50. I love the tents because you can bring them to the beach or just to sit outdoors with and you can actually enjoy the fresh air and be protected at the same time!

Agoo has children's clothing with sun protection, and UV Skinz has some great kids swim shirts, along with clothing for kids, adults, and some gear too!

And finally, keep an eye on your skin. Get in the habit of doing skin checks on yourself, especially if you have moles. Check for new growth and if you have a mole that is changing be sure to get it checked out immediately. The earlier these things are caught the better!

There's still a real woman behind this blog!

Whew! I feel like I've hardly been blogging aside from my reviews and giveaways. I suddenly got super, super busy so any "free" time is spent doing, well, nothing. Not only is my almost 8 month old son extremely mobile now (crawling everywhere, standing up while holding on to things and semi cruising!), but I have taken on a lot of extra stuff. I am working on a website for a farmers market in New Braunfels, sewing custom orders, sewing to keep my shop stocked, and also writing reviews. It's a lot! I don't even think I've showered in two days. 

I've been having quite the anxiety attack lately. A small, painful bump formed on the back of my neck just below my head. I'm pretty sure it is a lymph node. It's gone down in size and it's not as painful as it was the other day, so I am hoping it's just allergies or a cold or something, but I can't stop thinking it's cancer. For the rest of my life a bump, blemish, sore spot, headache, or any other ache or pain is going to automatically be cancer. Cancer head. It's unavoidable and it's making me anxiety ridden. I'm going to see a psychiatrist in March to get evaluated because the Zoloft that I am on for PPD doesn't seem to be working that well anymore. It works to some degree but I really think I need something different, and something that will hopefully help with my anxiety. I hate taking medication but right now I really have no choice, it's beyond my control.

I go to MD Anderson in Houston on March 1st for a follow up with blood work and a head, neck and chest ultrasound. Hopefully everything will turn out ok, but if it doesn't at least I can go to one of the best cancer hospitals. Excuse my language, but fuck cancer.

I've been looking into Buddhist meditation centers here in Austin. At this point I need to find some kind of spiritual path and I think meditation would be good for me. If I can learn to center myself and find peace then maybe all of this won't be so difficult to deal with. What do you do to calm yourself? Do you follow any kind of religion?

I've been desperately trying to get all of my diapers clean at the same time so I can take a photo of my stash. Maybe tonight will be the night (minus two)!

The Anti-Cancer: Food Edition

These days everyone has to be concerned about cancer. Many cancers are linked to the environment, then when you add stuff like food and beauty product ingredients into the mix and it's seemingly unavoidable. Take me, for example, I am a perfectly healthy 26 year old who doesn't eat meat or processed foods and I never go tanning (and never have) yet I still got melanoma. Luckily we can all be proactive in preventing cancer as much as possible, and one of the ways we can do that is through food.

Here are 5 of the anti-cancer foods taken from Caring.com

1. Blueberries, Acai Berries, and Grapes. The rich, dark colors of blueberries, Brazilian acai berries, and purple grapes come from phytochemicals that protect against numerous types of cancer. Most recently, researchers at the University of Florida found that the active ingredient in acai berries destroyed cancer cells when tested in cell cultures. And blueberries and muscadine grapes contain compounds that recent research shows cause cancer cells in the liver to self-destruct. In fact, the anti-cancer properties of these berries are so strong that researchers have developing concentrated supplements and other products such as purees and concentrates.
2. Green Tea. One of the first plant-based chemicals to be studied for its anti-cancer properties, catechins -- the chemicals in green tea -- have been known for some time to prevent and reduce recurrence of breast and other cancers. With this particular chemical, experts even know why: a chemical known as EGCG inhibits breast tumor growth, a University of Mississippi study shows. Just two cups a day is enough to do the trick.
3. Tomatoes. Harvard researcher Edward Giovannucci reviewed 72 different studies published by the National Cancer Institute, and concluded that lycopene, the active chemical in tomatoes, lowered the risk of many different cancers, particularly prostate cancer, breast cancer, lung cancer and colon cancer. Subsequently, the FDA conducted a review of its own and disagreed, refusing food companies' request to label tomato products with an anti-cancer health promotion message. However, many experts believe the FDA's process was flawed and that tomatoes will be vindicated by further studies. The good news: cooking tomatoes seems to enhance the effects of lycopene, qualifying tomato-based spaghetti sauce as a nutritional powerhouse. Bring on the pasta!
4. Broccoli and Cabbage. British researchers made headlines last year with a study that showed that men with early signs of developing prostate cancer prevented tumor growth by eating broccoli four times a week. Other studies have shown anti-cancer benefits from eating cabbage, brussels sprouts, and other cruciferous vegetables.
5. Garlic, Leeks and Onions. According to the National Institutes of Health, studies of people from Southern Europe who eat a diet high in garlic and onions show a direct relationship between high consumption of "allium" vegetables (all types of garlic, onions, and leeks) and reduced risk of many common cancers.

You can also cut down your risk of cancer by reducing your meat intake. Your diet should focus on plant based foods, if you eat meat it should be eaten as a side and not the main entree.

• Keep meat to a minimum. Try to keep the total amount of meat in your diet to no more than fifteen percent of your total calories. Ten percent is even better.
• Eat red meat only occasionally. Red meat is high in saturated fat, so eat it sparingly.
• Reduce the portion size of meat in each meal. The portion should be able to fit in the palm of your hand.
• Add beans and other plant-based protein sources to your meals.
• Choose leaner meats, such as fish, chicken, or turkey. If possible, buy organic.
• Avoid processed meats such as hotdogs, sausage, deli meats, and salami.

Eating a diet high in fat increases your risk of cancer. Don't cut fat totally out of your diet, but avoid saturated and trans fat. Saturated fats are mainly found in animal products like red meat and whole milk dairy products. The good kinds of fat are unsaturated fats and those come from plant sources. Primary sources are olive oil, canola oil, nuts, and avacadoes.

• Boost your antioxidants. Antioxidants are powerful vitamins that protect against cancer and help the cells in your body function optimally. Fruits and vegetables are the best sources of antioxidants such as beta-carotene, vitamin C, vitamin E, and selenium.
• Eat a wide range of brightly colored fruits and vegetables. Colorful fruits and vegetables are rich in phytochemicals, a potent disease–fighting and immune–boosting nutrient. The greater the variety of colors that you include, the more you will benefit, since different colors are rich in different phytochemicals.
• Flavor with immune-boosting spices and foods. Garlic, ginger, and curry powder not only add flavor, but they add a cancer-fighting punch of valuable nutrients. Other good choices include turmeric, basil, rosemary, and coriander. Use them in soups, salads, casseroles, or any other dish.
• Drink plenty of water. Water is essentially to all bodily processes. It stimulates the immune system, removes waste and toxins, and transports nutrients to all of your organs. 

The Bad and The Ugly

Cancer: The bad and the ugly. The word you never want to hear, the tough road you never want to have to walk down.
I was told today that the chance of my cancer coming back is greater than 50%. I don't like those odds one bit. When he said that I found myself back at that place where I was when I first found out I had the dreaded c-word. My stomach dropped and I immediately thought "oh my god, I am going to die". The truth is, we're all going to die. It's not death itself that I am scared of, it's not being able to watch my son grow up, have a family, become an amazing person that I am scared of. I want to be there the entire time, I don't ever want to have to be a past tense object. I don't want Elijah to have to say the words "my mom is dead".
Cancer or not, I will still eventually die, I just feel like things are going to end too soon. Even if I am 105 it will still be too soon.
Melanoma is a beast. It can go anywhere at anytime. It could go to my brain if it wanted, my liver, my heart, my stomach. It just goes. That's the really scary thing about this cancer, you can't determine your outcomes until it might already be too late.
I don't want to be a Debbie Downer and I am going to continue trying to be positive and telling myself that I will fight this and it will not come back. I'm lucky to be alive right now and every day that I get to spend with my son is another day that makes everything worth it.

It's been quite a while since I have updated my blog, sorry for that! It's been really crazy over here, and I am going to try to update now. I might have to do it in a few parts since I am really sore and I took my pain medication not too long ago, so I am a bit sleepy.

I will update on Elijah first. He's great! He's the best baby ever and I am really happy for that. He hardly cries, he's been talking a lot and starting to use his hands more. I have introduced a few small toys that he can hold onto and chew on. He especially likes this little owl chew blanket.
He's about 24" long and he is probably 15lbs. by now (he was 14lbs 8oz. a week ago).
In 8 days he will be 3 months old. It's insane how fast time flies by. Before I know it Elijah will be walking and talking! Hopefully not for a little bit, I have to get the house ready first, too much stuff to get into.

Now for the me update. I had a consultation appointment at MD Anderson Cancer Center. They suggested that I have surgery to remove the rest of the lymph nodes and fatty tissue in the area where the positive node was found. They do this as a precaution because if there is microscopic cancer it could grow and then in 2-3 years it would be billions of cells instead of say, 6 cells, which is what microscopic would consist of. The doctor told me that the probability of me having anymore cancer in my lymph nodes was small, but it's a precaution, and if there is any then they want to catch it.
The day of surgery was packed full of appointments. My first one was at 7:30am and it was an ultrasound of my armpit. They wanted to see the lymph nodes near the one that was removed. They removed another node from my armpit during the surgery, apparently it was one that should have been originally taken out the first time. I don't know why Dr. Fleming didn't. I am kind of skeptical about him now. The second appointment was an ultrasound of my neck. There was a lymph node on my right side that was irregular so they did a biopsy at that appointment. They numbed me with lidocaine and stuck a needle in my neck, twice. Totally creepy. It came back benign, so that's a relief. After that I had my anesthesia assessment, surgery check in, and then nuclear medicine to inject the isotope into my chest and get pictures so the surgeon would know the area of where he was taking things out. I was in nuclear medicine for 4 hours because the isotope wouldn't drain. We took pictures 3 times. In the last set of pictures it finally drained. I was glad because I had been laying on that hard c/t scan "bed" for hours and my back was killing me. I had a 30 min. c/t scan after that and then I was done and they wheeled me up to the surgery area. I got all checked in for surgery, undressed, and hooked up to my IV. They told me I would be awake when I got to the operating room, but I really don't remember anything. The last thing I remember is the nurse asking me questions like what procedure was I having done.
I don't remember anything that happened before about 10am on Saturday. Apparently I called my grandparents at 4am. Don't remember that at all. Jason told me they gave me dilaudid, and they gave me a lot of morphine. It's no wonder I don't remember anything! Jason even took some pictures on my camera and I had no idea!
I tried to eat breakfast on Saturday morning but as soon as I put a bite into my mouth I had to spit it out. I almost got sick, but I didn't. The nurse gave me some zofran for nausea and I ordered lunch and was able to eat it. Thank god! I hadn't eaten anything in about 36 hours.
I was finally released at around 6pm, we went and picked up Elijah and ate dinner and headed home. We got home at about 10:30pm. The car ride wasn't so bad, a bit uncomfortable. Everything is a bit uncomfortable though, they sliced my neck. It's hard to find a good laying down position for bed time, and I have a drainage tube in also. Nursing is pretty challenging but I am managing just fine, and Elijah is continuing to eat like a champ. I am super happy that he's such a great nurser. He just knew what to do from the very beginning. Good for me since I have so many stressors in my life as it is.

So now I am sitting here recovering. I am not supposed to lift anything for 5 days. So no lifting Elijah, that means I need help. I am going to my friend Nicole's house tomorrow while Jason is at work. I have a friend stopping by for some of the day on Tuesday, and another friend for some of the day on Wed.

These wonderful mamas re-opened my red tent. A red tent is a food tree, people sign up to bring you meals. It's an amazing help and I am so grateful for it. I can't wait until I am feeling better so I can help mamas who need it.

I am still going to have to do the interferon drug treatment for a year, but no more surgery. I am sure it's going to be hard, but I am strong and I will be able to handle it.

This whole experience is only going to make me a stronger person.

We had our last postpartum visit on Tuesday. I have to admit, I feel kind of sad about it! Going to the birth center was my life for the past 11 months and now I won't be going there anymore. Elijah weighs 12 pounds now! Mother's milk is doing that boy good.
The birth center costs $4500 to go to. We paid $2800 out of pocket. Turns out my insurance paid about $3300 of it so I emailed the insurance woman at the birth center and inquired about a refund. She emailed me back saying we would be getting a refund, they are just waiting for insurance to pay some other claims. I don't know what other claims they need to pay since the whole thing is supposed to cost $4500, plus the shot of nubain that I got. I guess we'll see. We need to use that money to pay other stupid medical bills.
I can't wait until I don't have to see doctors all the time. I had the dermatologist on Thursday at 7:30am, way too early. Who makes 7:30am appointments!? Apparently I do. Ugh. PET scan was on Friday. That went as well as it could go. I had my oncologist prescribe me some medication to take before the scan for anxiety. He prescribed me a xanax, one of the strong ones. I fell asleep during the scan and then came home and went to bed pretty much immediately and slept until this morning (well, Saturday morning since it's technically Sunday now). I think I am still feeling some after effects because I took a 4 hour long nap today. It's been nice catching up on sleep since it's pretty rare these days, but I missed breastfeeding Elijah. I was finally able to feed him today, and I cheated and did it a few hours early (after much research I concluded that I was no longer radioactive and 3 hours wasn't going to make all that much of a difference). I love breastfeeding. The bond is just so great between you and your baby, and the being able to give that to Elijah is just awesome. I have my follow visit with the oncologist on Thursday. We will be talking about treatment options and the results of my PET scan (which I really hope are good. I don't think I can handle any more bad news).
After that I have an appointment to get an IUD and then a general checkup with my new GCP on September 1st. You can just call me exhausted. Seriously. I have a 7 week old and I feel like I have been running a marathon.
I am finally getting adjusted to driving again. The freedom is great, and being able to do stuff like go grocery shopping while Jason is at work makes things a lot easier. It's pretty hard with an infant, but I can get it done.
Our washing machine just "broke" again, I say broke in quotations because you can get it to work if you watch it, but that totally sucks. I guess the water valve is broken. It fills up with water then doesn't stop and overflows. I looked up the parts to fix it and they are quite a bit more expensive than the other part we got, so it might just be better to buy a machine off craigslist. Money, money, money, money. It doesn't grow on trees, but it should. A washing machine is one of the most important things to have with an infant! Especially when you are using cloth diapers.
We have to pick up Elijah's birth certificate soon. For some reason I thought they were going to send it to us, but nope. Have to pick it up, and it costs $23. At least his social security card was sent to us and free! I still have to change my name on my ss card, and my license. I've only been married for almost a year now. At least my debit card and insurance card have my married name on them.
Ok, on to bed for me. Elijah will probably be waking up soon to eat anyway!

Oh, good morning.

I feel well rested yet extremely tired. How can that even be possible? Last night I finally managed the side nursing and was able to sleep through (for the most part) Elijah's night nursings. I put him on one boob and then fell back asleep and woke up when it was time to switch him to the other side a couple hours later. I bet he was like "awesome! I am just gonna suck until she pulls me off!"
Finally at around 6:30am he got a little fussy. He was acting hungry but spitting up and then getting even more fussy when I would try to nurse him again, so I finally swaddled him and rubbed his chest until he got quiet. He's finally asleep, but now I am awake. I feel like I should try to go back to sleep, but I am feeling a little hungry. I should probably take this opportunity to eat because I might not get one again today, for anything other than quick snacks anyway.
Babies are a lot of work. You know they are a lot of work before you have one, but you don't quite realize how much until you do have one. It doesn't matter if I am tired, hungry, or have to pee anymore. Baby comes first.
People tell you to nap when baby naps. Well, that's almost impossible sometimes. I am able to do it at times, but seriously, when your baby goes to sleep you finally have some time to yourself so if you aren't dead tired then you will probably take that time for you. I know that when Elijah is asleep I use the time to make myself something to eat. Once I even managed to jump in the shower quickly. Little stuff like that suddenly becomes a luxury when you have a newborn, so sleeping when babies sleep isn't entirely possible.

Now on the cancer note. I had my appointment with my oncologist on Wed. He basically told me that my treatment options were suck and suck even more. I have to have a PET scan, so we're waiting on insurance approval which takes a week or two. Once approval comes in I will have the scan (I won't be able to breastfeed for 8 hours because of radiation, but 8 hours isn't that bad and we can unfreeze some breastmilk and use the bottle, which we tried the other day to make sure he would take. He does and there's no nipple confusion, which is good). My treatment options depend on what the scan shows. If the scan comes back showing the cancer is somewhere else in my body then I could go to Dallas for a melanoma vaccine study as treatment. This sucks because I am not sure I want to do a vaccine clinical study, although it's already established it's still a study. Also, it's Dallas. It's not that close. It's not really an option if I need to go there all the time or for long stretches of time because I need o be near Elijah and I am pretty sure I would need someone there to take care of him will I was doing treatment stuff, and Jason has to work. Another also is that I can only do this study if the scan comes back with visible cancer which I clearly do not want.
There's another study I can do if there is no visible cancer, but it's in Virginia. That's really not an option.
So that leaves us with option #3, if there's no visible cancer then I will do the interferon drug treatment. This treament lasts a year. The first 4 weeks I would have to go in 4 days in a row per week to get a high dosage injection. After those 16 visits I would be able to inject myself at home every 3 days. The thing that sucks about this treatment is that the side effects are feeling like you have the flu, fever, and nausea. Great, so I will feel like shit for a year.
So no mater which way the cookie crumbles, this shit sucks.

P.S. How do I have a baby that is almost 4 weeks old? Time is moving too fast!

Cancer is a 4-letter word and sleepless nights (and days).

Just about everyone in my family has had (or has) cancer. My grandmother had colon cancer 40 years ago. My grandfather had prostate cancer just this year. When I was younger I used to "joke" saying that I would probably die from cancer or that I would probably get cancer in a few years. Little did I know I would be at least half right. Cancer has never been funny, I never thought it was funny, I have always thought that it was the scariest thing ever, but had I known exactly how scary it would be I would have never joked about how I would probably get it.
When I was first told that I had melanoma I was confused, scared, nervous, and angry. Whenever I thought of CANCER I had always thought about breast cancer, ovarian cancer, prostate cancer, leukemia. I had never really thought about skin cancer. Your skin is the largest organ that you have. It protects all of your other organs. You can't live without your skin. Not only that but my skin has been my canvas. I am almost scared to get any more tattoos now.
I feel like everyone knows someone who has had melanoma. Generally all of those people had the area of skin removed and were fine, that was it, so in a way I feel like a lot of people don't realize how serious or aggressive the cancer can be. I know people were just trying to make me feel better, but I feel like a lot of my fears got dismissed at first and I was told that I would be fine because so and so knew someone who had it and they were fine and they didn't need surgery, etc. I tried to remain positive, I told myself everything would be fine and that it was localized just to my chest and once I got the margin area removed then it would be fine. Too many people have had it and been fine, so why would I be one of the people that it had spread on? Not me. My life has been too hard for me to have to deal with something like that NOW.
So I finally had Elijah, and I finally scheduled my surgery. The surgery was a lot more invasive and intense then I was imagining. I think that a lot of people were surprised at how severe it was. I don't think anyone was expecting something of this stature.
I kept telling myself my lymph nodes would come back fine. I mean, almost everyone else who has had this has been fine, so I HAVE to be fine, right? Unfortunately cancer doesn't care how hard your life has been, or if the timing is "right" (can there even be a right time for cancer? no) or not. The pathology reports came back and there was indeed cancer, albeit a small amount, in one of my lymph nodes. Small amount or not, it was there, and that's enough to be classified as a stage 3, and enough to have to go through scans and treatment.
Cancer is cancer. I have cancer. I am back at the stage where I don't have any answers. This is the worst stage to be at because not only do I not know the extent of it, but I don't know what's next. It could be localized, or I could have it somewhere else. I might need to do an interferon drug treatment, or I might need to do chemo. I don't know, there are no answers yet. The only thing that I have an answer to is whether or not cancer is scary. The answer to that is yes, it's the scariest thing I have ever been through, and I have been through some scary shit.
As much as I used to say that I would get cancer at some point in my life, I didn't believe it would actually happen to me. No one thinks it will happen to them, but it does happen, and it happens to a lot of people. Cancer does not care how old you are or how healthy you are. It doesn't care what color you are or where you live, how much money or how poor, whether you have health insurance or not. Cancer just does not care.
This whole experience has shown me that there are people who really care though, and that's a beautiful and wonderful thing. People that I hardly know have offered help, brought us food, offered rides. I can't express enough appreciation. It's made everything so much easier for Jason and I. Adjusting to a newborn is hard enough without throwing cancer into the mix.

It's taken me well over an hour and a half to write this entry so far. I have a 3 week old infant who has suddenly become fussy this past week. He went from being a sleepy infant to an extremely awake infant. It's hard, it's really hard. I have cried a few times from pure frustration. I am only frustrated when he cries and I can't figure out why. Is he hungry? Seemingly yes, he's always hungry, but sometimes when I nurse him he gets super fussy and pushes me away, but screams because he is hungry but isn't eating yet, but he's pushing me away! What do I do in this situation!? I keep trying until he latches on, but then rinse and repeat. It doesn't happen all the time, but it happens enough that it has me completely exhausted. There's nothing wrong with our nursing, he latches great, my breasts have milk, he's getting fed, he's just FUSSY.
He's had gas lately. I am sure that's uncomfortable and I am sure that's making him fussy sometimes. But what do I do!? I got some gripe water and tried giving that to him but he spit up after. That's another issue, he's been spitting up a lot.
It's just a lot. I know that it won't be like this forever, but it's like this now, and I am tired. Jason has to work so he can't get up all night to change diapers, and he can't feed Elijah anyway. He does pretty good at night, but then 6am rolls around and like clockwork the fussiness starts.
It will get better, but this parenting thing is hard. The one misconception I had was that it would just come naturally. A lot of it does, but it's a huge learning process and you need to work to get it right.

I feel it all.

Wow, what a week. Let's start with Friday. Friday I had my surgery. We dropped Elijah off at my friend Nicole's house. A while back after hearing my story she offered to be my wet nurse for Elijah. She has a beautifully written blog entry about the entire experience on her blog at http://nicoolio.tumblr.com. After we dropped Elijah off we went to St. David's and checked in with admissions. We were then brought to a dreary day surgery room and I changed into the gown and got as comfortable as I possibly could. I had my vitals checked and an IV started and finally they took me down to nuclear medicine at around 10:30am. I spent a long time in the nuclear medicine room, we hit a few road blocks in there. Originally they were going to inject my chest with the radioactive dye and then I was going to go through this scary looking machine and have photos taken so they could find out which lymph nodes the dye went to. Well, I am breastfeeding, therefore leaking breastmilk, and the radioactive dye gets into breastmilk, so I was leaking radioactive breastmilk. This wasn't harmful to me, but it would really mess up the photos and confuse my surgeon when he was trying to figure out which lymph nodes he was going for. So instead of taking the pictures everyone decided my surgeon would just go in with this tiny camera during surgery to find which nodes they went to. Because I was leaking radioactive breastmilk we had to figure out a way to contain it so it wouldn't contaminate the operating room, so we taped breast pads to my breasts and a nurse wrote do not remove on them. I got the dye injected in 4 areas right around the site of the melanoma, it burned a whole bunch, then I was sent back to my room.

Once I got back to the room the nurse came in and hooked my IV back up and asked if I wanted to be pre-sedated. UH, YES PLEASE. Finally the anesthesiologist came in and talked to me about the procedure and gave me a sedative. It must have made me pretty damn out of it because when we got to the operating room I asked if it was the OR and then the next thing I knew I was waking up in the recovery room. I had a big bandage covering my chest and a drainage tube attached to me (which was the most annoying thing ever, seriously. It made everything from nursing to peeing to showering difficult). I spent a bit in recovery and then I was finally released and able to go home.

Recovery hasn't been terrible. My chest is really sore, I was prescribed hydrocodone, I am sure it's doing something and it would hurt a lot more if I wasn't taking it, but I feel like it's not doing enough. Nursing with the drainage tube in was a bit of a challenge, and a little painful when Elijah's little hands would grab it.

Here is a before and after photo:




So there's that. Then there's this...

Today I went to get the drainage tube removed. After my surgeon removed it he got the pathology report from my lymph node biopsy. The lymph node in my armpit came back clear of cancer, but the lymph node that was near my collar bone came back with a small amount of cancer in it. 0.7mm. So it's very small, but it was there. If we had waited 6 months it would have been 1 or 2cm and I probably would have had to have another surgery. So, I don't need to have anymore surgery, but I do need to have PET scans, which is a radioactive body scan to look and see if there is cancer anywhere else in my body. He was also saying that I might have to do some kind of drug treatment. He mentioned Interferon. We won't know exactly what treatments I will have to do until we see the oncologist.

Elijah is my rock. He makes me stronger than I might normally be because I need to be there for him! I think I am doing a pretty good job of dealing with everything. I have lost it a few times during this whole ordeal, but nothing major. I have been trying to stay positive about it all, but I still get discouraged sometimes. I still cry and worry and am scared, but I know that in the end I will pull through, it's just going to be a huge pain in the ass, and it's going to make me a little sad sometimes.

I can't wait until my chest wound heals so I can start wearing my moby wrap and wearing my little Elijah. My chest is his favorite spot to lay. I wish him laying there would make me all better.

One day everything will be back to normal.

My owl no longer has a face

Originally uploaded by elijahmercury