Wednesday, November 18th, 2009

 "Never to suffer would never to have been blessed." - Edgar Allan Poe

 You know when there are days that you will remember for the rest of your life? Kind of like your first kiss, the time when your boyfriend says that he loves you, an argument that you have with your parents and you yell out, I hate you, when you really don't..... One of the days I will always remember is Wednesday, November 18th, 2009.

As I was on my way to work, on the train, no doubt, I get a call from my doctor. I noticed something off on one of my breasts. Something like a rash of some sort. (I know, this is mad disgusting) Unfortunately I've had something like this before when I was in high school and it turned out to be a fungal infection (yeah, I know, totally gross right?), but after all the stuff I went through with aunts on both my dad's side and my mom's side suffering from breast cancer I knew I had to get this taken care of. I paid for some anaerobic and aerobic swab testing to be done twice, two weeks apart, and had a friend of the family that is now my  temp doctor receive the results of the tests. Mind you all, I don't have insurance right now since I've been on and off unemployed the past year and a half. COBRA's already gone and I haven't stayed long enough at my previous job to be eligible for health insurance. I've been so careful with my health since I had to put it on the backburner til I can get myself back with a stable job and such. I work at a job now where I can receive insurance even being part time and I am looking into it. This is something that I just couldn't wait on tho.

So, about this call, I got some really disturbing news. The tests came back negative for fungal infections, but positive for cancer cells. I'm like, WTH?!?!?!?! At first he even thought it was a fluke and waited for the second set of swab results to come and again it came back positive for cancer. I told him that from my last mammogram (because I had an aunt that was diagnosed with breast cancer I felt the need to be on top of it to make sure that I don't have it so I got a mammogram) there was nothing there. He told me that given the fact that I now have history of breast cancer, he looked into other forms. I have a rare form of breast cancer called, Paget's Disease.  When he found this out, he felt the need to call. Granted I was kind of pissed off that he calls me and tells me on my cell phone, WHILE I'M ON THE TRAIN TO WORK, but I calmly asked him if I had time to wait til January when I have better insurance. He said yes, but he still wants to do a couple more tests. I honestly can't afford anymore tests, but I'll do the best that I can.

In case any of you might be wondering, this is the definition of what I might have:

Paget's (PAJ-uts) disease of the breast is a rare form of breast cancer, accounting for less than 5 percent of all breast cancers. Paget's disease of the breast starts in the breast ducts and extends to the skin of the nipple and to the dark circle of skin (areola) around the nipple. Paget's disease of the breast isn't related to Paget's disease of the bone, a metabolic bone disease.

In case any of you might be wondering, this is what I will have to go through if I do have it:

Paget's disease of the breast usually requires surgery. Which type of surgery you need depends on the condition of the skin around your nipple and how advanced the underlying cancer is.

Surgical options include:

• Simple mastectomy. This procedure involves removing your entire breast, but not the lymph nodes in your armpit (axillary lymph nodes). Simple mastectomy might be recommended in cases in which an underlying noninvasive breast cancer exists but hasn't spread to the lymph nodes.
• Lumpectomy. Breast-conserving surgery (lumpectomy) involves removing only the diseased portion of your breast. Your surgeon removes your nipple and areola along with a wedge- or cone-shaped section of your breast. The surgeon focuses on removing as little breast tissue as possible, while ensuring that the tissue removed includes an outer margin free of cancer cells so that only healthy cells remain. Lumpectomy to treat Paget's disease of the breast almost always requires follow-up radiation therapy as adjuvant treatment. Lumpectomy wouldn't be recommended if you can't have radiation therapy for some reason. Nipple reconstruction may be an option after your treatment.

Sentinel lymph node biopsy
Anytime invasive breast cancer is present, the lymph nodes under your arm (axillary lymph nodes) need to be checked to see if the cancer has spread to this area. This can be done in a procedure known as a sentinel lymph node biopsy.

During the biopsy, your surgeon locates the sentinel nodes — the first lymph nodes to receive the drainage from breast tumors and therefore the first place cancer cells will travel. If a sentinel node is removed, examined and found to be normal, the chance of finding cancer in any of the remaining nodes is small and no other nodes need to be removed. If the sentinel node tests positive for the presence of cancer cells, you may need to have more lymph nodes removed.

Adjuvant therapy
After your operation, your doctor may recommend additional treatment (adjuvant therapy) with anti-cancer drugs or hormone therapy to prevent a recurrence of your breast cancer. This depends on the extent of your breast cancer and whether the tumor tests positive for certain characteristics, such as having estrogen or progesterone receptors. 

Yeah, this is some scary shit huh? All that has been going through my mind is what am I going to do now? I'm already struggling through life on a very thin rope. I have friends and family around me that are sick, have been deathly sick, or have died. I don't have a real job. I have no savings. I barely have a relationship with family. I might be losing my boyfriend over something in my mind is stupid, but not to him of course. This is the last thing that I need. All I can think of right now is how alone I am. I can't really turn to people with this. I don't know if I have it for real or not. I don't want to bring anyone else down for that matter. Everyone around me has gone through something crappy this past year. I can't burden anyone with what's going on with me. I'm not selfish like that. I couldn't even tell Becca because of her fundraiser that went down that weekend. I didn't want to lose focus on what we're trying to accomplish. Once again I'm in this awful waiting game called life. All I can do right now is sit and wait til next year when I can get more tests done and see if cancer is what's really growing inside of me. Once again I feel utterly alone.

Recovering

"Make your own recovery the first priority in your life." - Robin Norwood

My cousin Robin is doing great. The last time Vince and I went to see him was last Friday night. He and Jennifer were awake when we got there. Robin remembered who Vince was and even said his name. He was in the process of removing the leg massagers when we walked in. It was nice to see him moving around a lot. His face is still a bit slack on the left side, but I'll take it considering he's improving pretty much each day.

Today he's getting transferred to a rehab facility that's closer to home. He's sooo excited! We all are. To think 2 weeks ago he suffered a double stroke. This awful waiting game with him is finally over and done with.

Thank you all for good thoughts, prayers, good mojo and juu juu. It's been a journey, and I know it's not over just yet. But I thank you all from the bottom of my heart.

Understanding

Health is not valued till sickness comes. - Dr. Thomas Fuller

I'm so sorry that this has happened to you. I know that you're angry. I know that you're upset. I know that all you want to do is go home. Trust me, if I had the power to take your pain and frustration away I would. I would trade places with you in a heart beat. There are so many people that love you and want you to be healthy again. You have so much to live for and I wish that I can help you see that.

I know that I haven't seen you often. Regardless of you being sick now or even when you were better before. I wish I can turn back time and spend everyday with you. I wish that I was there when you needed me the most. I wish that I can make the family see and understand that this is not the way that you should be. That this is not how you want to live the rest of your life. And that we need to work together as a family to make you comfortable.

I want you to know that we are all doing our best to help you in any way that we can. We will make things better for you, I swear. We all love you so damn much. You have shown us your strength and your willingness to survive. Please don't give up. Now is not the time. Please be patient just a little longer. Help us help you. That's the best thing that I can tell you right now.

I miss you and I love you and I wish that this didn't happen to do.

Here I come to save the day......

The crisis of yesterday is the joke of tomorrow. - HG Wells

So over the weekend it was Halloween. Becca and I dressed up as X-Men superheroes. Bec was Rogue and I was Psylocke. We went around the whole city with our zombie friend Tiffani, going to house parties, loft parties, clubs and bars. We didn't get home til pretty much 6 in the morning the next day. It was great fun to get a chance to be someone else for a night and not be me. I was Psylocke, the psychic ninja! I possess telepathic and telekinesis powers. I'm vicious with a kitana sword. I can fight and win over injustice and empower all evil things that go around me. Like I said, it was a great night!

Now, back to reality. Last Thursday, after working an 8 day stretch and a 10 hour shift at work, I'm on my way walking thru the tunnels of the building that I work in while reading my text messages. I received quite a few texts from my family saying that I had to call my cousin Robin's girlfriend Jennifer right away. I then noticed that I missed a few phone calls from my other cousin Jay's wife Aive. So I call her right away. As I'm getting into Vince's car, I'm talking to Aive and she's telling me that Robin suffered two strokes, one on each side of his brain. They are in the process of getting him on a Flight for Life to another hospital that specializes in stroke victims that's in Milwaukee (he orginally was in McHenry) and that the doctors were telling the family that things aren't looking good and that he might not make it. Vince, being the greatest boyfriend of all time, made the decision as I was losing control to drive out to Milwaukee.

During the drive I know I had to have been babbling on with stories of Robin when we were growing up. I know I must have been nagging him too to take better care of himself because I know that I couldn't bare to go through this with him. Then I started getting worried that Vince hasn't eaten dinner yet, he has to work early in the morning the next day, I forgot to make reservations for a birthday party for Vince at one of his favorite restaurants, I still have to finish getting stuff for my costume, OMG! Halloween.....how are we gonna do this???? He was very calm and told me that we'll come to it when it gets there. right now I need to concentrate on being strong for my family.

At this point I'm getting really tired of being strong for anyone. When Vicki died, I had to be strong for Aive. She was hurting the most. When my aunt in the Philippines died, I had to be strong for my Dad. He didn't even want to talk about it for a long time. Now that Becca's cancer came back, I had to be strong for our friends to make sure that they know that she's going to be ok or to start to nag her about stuff. When Wawa suffered her stroke earlier this year, I had to be strong for the family and help them get through this whole ordeal. It's a great pain in the ass to be the strong one all the time. When do I get a chance to be the weak one?

So, I've been driving back and forth, from Chicago to Milwaukee, this whole weekend. I was able to give my boyfriend the birthday party that he deserved and still went out to fight crimes and have fun with friends. Some time during my whole existence of being numb, mad, worried, sad, and losing control these past few days, I remembered that life goes on and that no one would want me to stop living. Even if it's for a day. Even if it's for a few hours. Yes, I had to be strong. Not because someone always has to be the strong one, but because I finally realized that life will go on regardless of what happens. It's up to us to figure out how we live it, regardless of the situation.

As of today, things are starting to look better with Robin's condition. We're still in this vicious waiting game, to see how much of Robin's memory and body function is gone. The doctors gave us some good prognoses. We just have to wait and see and go on his body's time clock for now.

I want to take this time to thank all the friends that have been there for me through out this whole ordeal. You guys are the greatest! Thank you for the prayers, happy thoughts, good mojo and juu juu, and just letting me text, vent, talk it out, and cry. You guys helped me out so much.