***Newsflash***

Hot off the presses!!! I just received a call from Rose, the Breast Center Coordinator extraordinaire. (Working on a Saturday no less!) She informs me that my surgery is scheduled for November 2nd. "B Day" (as is "Boob Day.") Now I feel like things are moving and we are working towards something solid!

A Busy Week at the Circus

We had a lot going on this week. On Sunday, my father and his wife (David and Michele) came for the week to help out. I had a busy week at work and really appreciated not having to worry while I was gone during the day. They were very helpful with the mom's basic care needs, plus pitched in with household stuff as well. Needless to say, my diligent attention to housekeeping has gone by the wayside lately. They were wonderful in helping with dishes, dog walking, and even the dreaded "poop patrol" in the yard. (Thanks Dad!!!) They also did some relaxation techniques with mom. Dad, a former massage therapist, was able to really help mom with sore muscles. Michele, who has advanced knowledge in Reiki (an energy technique used in alternative medicine,) worked on her for quite some time. Mom said she felt very relaxed and energized after they finished.

That wasn't the only goings on. Mom had several visitors as well. On Monday, her cousin Regina and her husband Bill drove all the way from Front Royal, VA for a short visit. Despite her lack of stamina for such visits, mom was so happy to see them and they had a wonderful visit. Later in the week Regina's brother Robert and his lady friend Cindy stopped by for a visit. Mom looks forward to these visits so much even though they usually have to be cut short because she becomes quite fatigued. But the lift they give to her spirits is good medicine.

I had a few lifts myself this week. I received several "care packages" from Charleston. My friend Amy sent some "relaxing" lotion and one of the best cards I've seen in a while (hilarious!) And Amie, Ashley and Jennifer, ("The Martini Princesses") sent a box of Charleston love. (Thanks for the Benne wafers guys!!) For those of you wondering, Benne wafers are a Charleston favorite and you can't get them anywhere BUT Charleston. If you have the means to get them, I highly suggest you do! They are heaven!!

As far as "health" news, there isn't much to report. Mom is still doing the same; some days are good, others not so good. I'm still waiting for a surgery date... nothing to be alarmed at. The breast surgeon has to coordinate a date with the plastic surgeon who has been out of town. I should know something soon. I met with the genetics counselor last Wednesday. She affirmed most of what I'd already knew or had read. I plan to have the blood test done next week. More waiting, but we'll have plenty to keep us occupied. Mom has an appointment to get a calcium infusion Monday. Her best friend is coming mid-week to help. And three of my girlfriends are coming next weekend to "surround me with love and healing."

And Now, More Juggling!

And so it goes... The day started out early. We had to have mom up, ready and out by the crack of 10, which is no small feat. She was scheduled for a thorocentesis of her left lung; the one yet to be drained. Ironic that last week we were basically a "walk in", and were able to get in and out in record time. Today she had an appointment and we were there for six and a half hours. But in all fairness, we did have to stay about 2 hours longer this time because they needed extra time to observe mom. The puncture they made didn't close up as quickly as they expected so we had to hang out to let it heal, then get another chest x-ray to make sure everything was right. Exhausted as she is by all outings, she nevertheless insisted on walking up the stairs this time (Gary and I usually have to carry her.) She is pooped, but all in all, doing very well. And outing days are Chik-fil-A days! She loves Chik-fil-A and always requests that we stop by on the way home no matter how tired she is. Hey, if she'll eat it, I'm buyin' it!!

Not much to report with me. I spoke with my surgeon yesterday and she is in the process of finding a date that she and the plastic surgeon are available together. I've chosen to be tested for the BRCA gene (the breast cancer gene.) I'm meeting tomorrow with the genetic counselor. My understanding is that they draw a blood sample and then, yup, you guessed it... more waiting!! My surgeon told me it takes 3 to 4 weeks for the results to come back, but I've heard that it can take up to 6 weeks in some places. In any event, it won't change my decision about the mastectomy. However, if I test positive (about 1 to 2% of women are positive) I'm at a much higher risk for ovarian cancer. I will need to decide whether to have my ovaries removed because the survivability for ovarian cancer is not good. Since my mother and her grandmother both had breast cancer, I think it is a prudent move to have this test. Knowledge is power...

Sideshow Dog

Okay, this is my lame attempt at a sideways homage to "The Simpson's." In every circus there is a sideshow. Although, the Center Ring has been all consuming in our lives, the insanity of life still marches on.

Roundabout Wednesday, this lovely pup comes wandering up to our door. Skinny, scared and cowering, she was immediately appreciative of any and all attention Gary and I gave to her. In fact, she was completely starved for affection. Suckers as we are for the four-legged types, we brought her on the porch, gave her water and food and cleaned up her face. We called the pound, the SPCA and the 2 local vets in town, but no one had reported a missing pup fitting her description. We thought about taking her to the pound, but if they get full they start to euthanize. Just the thought of any animal being in a cage just makes our skin crawl, so we decided to "foster" her for the time being. There was an old dog house left under our porch, so Gary fished it out, cleaned it off and before we could even get the top on she jumped in! So now we have a house guest we are sheltering and feeding until someone adopts her (you know who you are!)

Star of the Big Top Shines Brightly

Just a quick note about mom... I took her to have a chest x-ray today. Her pleural effusion had returned. They were able to squeeze us in to outpatient surgery to have it drained. Although she woke up much more energetic today, it tuckered her out to be up and about so long. But the procedure provided a lot of relief in her breathing. Her appetite was quite good today. And I completely forgot in the blog yesterday, but Gary weighed her and SHE HAS GAINED 2 POUNDS!! This is absolutely fantastic as now she is tipping the scales in the triple digits again! This has been no small effort on her part. She always tries to eat even just a few bites even when she can hardly stand to look at food. She is definitely the star of the big top today!

"...And Now In The Center Ring..."

I found out that there was a great article yesterday in the Sunday NY Times regarding a 33 year old woman who'd tested positive for BRCA1 (the breast cancer gene) but who has not been diagnosed with breast cancer. She had to make an agonizing choice whether to have a preventative double mastectomy. It is an amazing article and I encourage you to read it. There are some really good links as well. Follow the link...
http://www.nytimes.com/2007/09/16/health/16gene.html?hp

Today was the day mom finally had her oncology appointment. She was VERY weak today and it took incredible effort on her part just to get to the car. She'd had such a good weekend. Friday she had a great appetite and looked better. Saturday, her cousin Robert dropped in for a visit. She was so excited when he called Friday to set it up. They had such a lovely visit and were able to catch up on the years since they'd last seen each other. I saw a spark in her eyes that I hadn't seen in quite some time.

The oncologist said that at this point she is too weak for chemo. I completely agree; she just has no reserve. He discussed the results of her tests. The cancer cells in the fluid pulled off from her lung tested estrogen receptor positive and progesterone receptor positive. He recommended an aromatase inhibitor called Femara. This helps to block any estrogen and progesterone that her body is producing which is "feeding" the tumor. Once those hormones are blocked it will help to shrink the tumors. It is basically a good start. The oncologist wants to see how she does on the Femara for a few weeks before considering chemo. He also feels that the pleural effusion has returned. So tomorrow morning we are off to get another x-ray. If our suspicions are confirmed, she will have her lung drained again. This should provide some more relief for her.

We are investigating a homeopathic that can be used in conjunction with the "traditional" therapies. It is called Enercel and it is very promising to improve both quality and quantity of life. Check out their website at http://www.enercel.org. There have been several studies done and it is even listed as a treatment on the American Cancer Society website at http://www.cancer.org/docroot/ETO/content/ETO_5_3x_Enercel.asp?sitearea=ETO.

Despite her utter exhaustion she still maintains her sense of humor. When I asked her what she wanted to do when we got home, she said without dropping a beat, "I wanna dust." I nearly drove off the road I was laughing so hard. I guess I'm just going to have to break out the Pledge and the dust rag this weekend...

The Dog & Pony Show Continues

It's been crunch time this week. I learned the results of my MRI. It showed no other areas of cancer; however, there are several areas that are "probably benign." This means I would need to be followed very closely over the next several years to see if they progress to cancer. I also met with the plastic surgeon; the last team member I needed to meet with before "having all of the information to make my decision." He explained the options if I were to choose mastectomy. First, they could place an implant. This is a shorter surgery (about 6 hours,) but it is done in stages. They put something called an expander in and over time they slowly increase the size. Once the skin is stretched to the final size they place the permanent implant. This could be either saline (not as natural feeling) or silicone (more natural feeling, but saddled with a bad reputation for causing auto-immune problems. Studies have yet to prove the link.) I'll just go on record here by saying I'm not keen on the idea of having a foreign body in my body if I can help it.

We also discussed another option called a DIEP Flap for Deep Inferior Epigastric Perforator Flap. They take the "belly fat"-- I just hate that term. I've lived in blissful denial for YEARS that I possess any "belly fat!" Anyway, they surgically remove the belly fat and skin carefully severing the arteries and veins. The remaining skin is stretched down and reattached (basically a tummy tuck.) The fat is shaped and inserted into the cavity where the breast tissue has been removed. They carefully reattach the veins and arteries. This is a very delicate, very time consuming surgery because they are using microscopes to reattach all of the vessels. This surgery can take up to 12 hours. I may be a candidate for what they call "skin sparing" where they cut out a small keyhole of skin around the breast and remove the tissue from that small hole. There is also a procedure that is "nipple sparing" but they are not yet sure if I am a candidate for that. The benefits of skin- and nipple-sparing are obvious. I get to keep as much of the external tissue as possible. While the belly skin and fat is most like breast skin and fat, there can be pigment differences. And no, I asked if they could take it from my butt and the tissue just isn't right... Bummer!

Every physician and healthcare worker I've talked to has said that this is a very individual choice. And there is no wrong decision. So over the last few days, I've been weighing all of the pro's and con's for me, my family, my lifestyle. Every single woman that goes through this likely goes through the same process, but with a million different reasons for the outcome. I've considered my future risks and my situation with my mom right now. I've chosen to have a double mastectomy with DIEP Flap reconstruction. My heart and mind are one on this decision and I'm at peace with it.

I know I don't need to justify my decision because I'm the one that ultimately needs to live with it, but I will share my thought process if for no other reason than to provide insight to other women that may go through this. First, I am a woman which is the biggest risk factor I have. I'm white (yes, a surprise to many I'm sure...) White women are more likely to get the disease while black women are more likely to die from the disease. I have been diagnosed with breast cancer. My chances of recurrence are higher now that a woman who's never been diagnosed. I have a family history of breast cancer which raises my risk as well. I have several other areas of concern (the "probably benign" areas.) I've been diagnosed at a much younger than the average woman so I have at least half of my life expectancy to live. My chances of recurrence go up 1% of every year after my diagnosis. If I live to be 80 I'll have a 40% chance that breast cancer may return. Also, I'm young, in relatively good shape and can physically handle a lengthy surgery better now than later in life. If I ended up having a recurrence at age 65 and need a mastectomy it will most likely take me much longer to recover. In all honesty, I just want it out! I want to live with as much peace of mind as possible. A double mastectomy gives me the greatest decrease in risk and that's what I want.

One in eight women will be diagnosed with breast cancer. That means several of you reading this WILL be diagnosed. Please, please get screened! Do self breast exams! Get mammograms starting at age 40! Encourage your mothers, sisters, wives, and friends to do so! There is NO excuse not to. Insurances cover it and if they don't there are resources (I'll provide that information in a future blog.) Since I've been diagnosed I've been able to convince 6 women to get their mammograms. If every person reading this convinces just 5 women to get screened and they convince 5 women I feel like I will have made an impact. This is a curable disease if caught early and a very treatable disease if not caught early.

The Simplicity of the Circus

When you go to the circus, a lot of the experience is about simple things. Popcorn, hotdogs, bleachers, greasepaint, animals, double-jointed people. Not a whole lot of special effects. Now, I admit, it has been years (actually decades) since I've been to the circus, so much may have changed. When you are dealing with illness, sometimes the simplest things take on new significance. I can hear you saying now, 'Why on earth is there a picture of pillow's posted?' I know I would be. After a full week of trial and error with pillow placement for my mom, we finally hit the jackpot yesterday! The perfect configuration. So I didn't want a little thing like changing the sheets to mess it up. In this day and age of technology, I decided to grab my phone and snap a picture of it so my sieve-like mind wouldn't have to work double-time to remember the arrangement. Ah, technology...

Mom and I are learning patience together. She remains weak and has been frustrated by her body's inability to maintain any level of strength. I remind her that this did not happen overnight and her strength will not return overnight. She's not even receiving treatment yet. I hug her and kiss her and tell her we will walk this path together. It is bizarre because despite having the same disease, I am full of energy and strength and feel healthier than I've felt in years. Anxious as I am to start my treatment, I'm even more so about her starting something, anything now! We have another week until her appointment with the oncologist and it is hard to see her in this state. Everyday I look at her, my patience is tested.

The other day I had just washed mom's hair and I was thinking as I dried it that every job I've ever had has prepared me for caring for her. Now, I've had a LOT of jobs. I worked in a hair salon, worked as a 'duster' and gift wrapper, was a make-up artist, a temp, worked in the movie industry, was a barista, worked in sales, marketing, and many aspects of nursing. In the last week, I've used skills I learned from every single one of these jobs. I mentioned this to my moms best friend who asked how dusting expensive 'chachkies' at Fast Buck Freddies (yes, that was the name of the store!) helped prepare me for this. I told her, that arranging medical equipment, 'Get Well' cards and the like in an aesthetically pleasing albeit functional way is of the utmost importance to a healing environment! But I think that hours upon hours of dusting incredibly expensive and fragile 'chachkies' put me off dusting for life. Mom calls my refusal to dust my one fatal flaw. Sorry mom, gotta focus on the simple things. Like pillows.

Climbing the Ladder up to the Highwire

I feel like I'm ascending up that tiny ladder they have going up to the highwire. You know the one that is nearly invisible to all in the audience; the one that doesn't look like it could even support a small bird let alone a human.

First, let me, from the deepest part of my heart, thank every single one of you who have sent emails, left messages, called, prayed, sent out positive vibes and the like. Know that mom and I feel every single good vibe coming this way and it sustains us and gives us the strength to put one foot in front of the other. The days are running together but I will tell you what we've learned at this point.

We received the results of my mothers tests. Her chest, abdomen, and pelvic CT showed all clear: no vital organ involvement was visible. Her bone scan showed a few spots on her thoracic spine. The fluid they drew off her lung showed some malignant cells. We saw the breast surgeon yesterday and she was scheduled for a breast biopsy, but one look and the surgeon said there was no need. She said it is clearly breast cancer and said she didn't think she should put mom through a procedure that was not warranted. She did say that the malignant cells in the fluid tested as estrogen receptors which means the breast cancer is the primary cancer. This also indicated to her that putting mom on tamoxifen (an estrogen inhibitor) would help decrease the size of the tumors and perhaps slow or stop the pleural effusions. We see the oncologist in a week and will see what he recommends. As for now, she is comfortable much of the time. Still she has no pain, but does experience some discomfort in breathing from time to time. We're learning to anticipate those episodes and adjust her oxygen level accordingly. It helps from time to time.

As for me, I am still waiting for the MRI results. It hasn't been bothersome to me because I've been so preoccupied; as long as I get them before my appointment with the plastic surgeon which is Thursday. I am interested in what they have to say now though. I've gone from being just another woman with breast cancer, to one with a strong family history. I learned only this week from my mother that her paternal grandmother had breast cancer also. I need to heavily weigh this information before deciding what course of treatment to take.

So on we go. Climbing that tiny ladder, stepping out onto the platform that a large basket of fruit would have a hard time balancing on, looking down and seeing no net.

The Pendulum Swings

So I've been pretty upbeat. But yesterday and today, the flood gates have opened. But not for what you'd think.

My mother, who lives with us, has been losing her energy and appetite for the last few months. It has become very bad over the last few weeks; ironically REALLY bad since my diagnosis. It reached the tipping point on Labor Day. She wasn't able to climb the stairs and was eating less than 800 calories a day. We insisted that she let us take her to the ER. It was an absolute battle to convince her to let us take her, but we left her no choice. See, she does not have insurance and is just 3 weeks shy of her 65th birthday at which time she will get Medicare. I didn't think it was wise to wait. I was right.

Two weeks and one day after my diagnosis with breast cancer, my mother was diagnosed with metastatic breast cancer. This is no joke. But I'm convinced it is some sort of surrealistic nightmare. I never hated being a nurse until last night in the ER when she showed me the gaping wound on her chest and under her armpit. I knew what it meant before she ever opened her mouth to tell me. She was admitted to the hospital for tests. Today she had a CT scan of her torso, a bone scan, and they drained nearly a liter of fluid off of her right lung. She had what we call in the medical universe "bilateral pleural effusions." They didn't even touch her left lung because her skin is so swollen and tight, they felt it best not to puncture it.

The good news; she is home in her bed which is what she wanted most. She has her two "grand-dogs" as she calls them. Her bed has an amazing view of the Chesapeake and she watches the sun rise every morning. She now has oxygen 24/7. I thank God, but she has not and still does not have any pain. And she is resting comfortably. I, on the other hand, am wondering if I'll ever sleep again.

My head aches and my eyes are still burning from all the tears shed over the last day. I was ready to face this disease head on; no problemo! But damn it, I feel like I've now been punched in the gut. It wasn't supposed to get her too! I find myself wondering how I'm going to take care of both of us. One decision I have made today; I will be withdrawing from school this semester. There just too many other things that are higher priorities. I can re-enroll next term, but I just have to do this right now. I need to be with her as much as I'm able. Although I'm in agony over this, my mom and I had a discussion. Seeing her decline was a nightmare and knowing what she has now is not much better. But I find that it is easier to deal with the devil you know more so than the devil you don't!