Sunday, September 22, 2013

Let's Talk About My Boobies (Long post)

I've had several people ask me how my cancer was found.  So I thought I would write it out for everyone all at once.  Who knows, it may help others to trust their instincts.

I remember when I got my gallbladder out, and had a hysterectomy later, that I thought "Hmm, this is a great way to lose weight.  I wonder what other body parts I could get rid of".  My breasts never made the list.  I love those things.

Well, a year ago I dreamed I had cancer.  It was a very vivid dream, and I could actually see the cancer growing on what looked like a gland in my body.  I dreamed I told everyone that I was about to die.  I remember everybody I knew climbing onto a school bus and waving goodbye to me out of the windows as they headed to my funeral.  I awoke shaken and saddened.

Around that same time, I had shooting pains down my right arm for a couple months, had a numb hand, and I would wake at night screaming from the pain.  But I thought it was just maybe a herniated disc or pinched nerve from carrying Eliah around.  I didn't have insurance or time for a doctor, so I dealt with the pain.  Plus, you can't go to the doctor with a cancer dream and wonky arm and expect them to take you seriously.  Eventually, after a few months, the pain lessened and I thought I was getting better.

Also during that time, I had only the second dream of my mother since her passing in 1997.  I dreamed that she was coming to live in my town, and I was helping her pick out a place.  I didn't know what it meant at the time.

After I sewed the quilt,
I ironed on photos of the family in all the white spots
I subconciously started getting ready for something to happen to me.  I recorded all of Eliah's favorite books on video for him.  I made a memory quilt for Natalie with pictures of our family.  I even picked out a song (in February) that I wanted played at my funeral.  I swear I'm not a morbid person, but I felt a driving force to do these things.   I even told people that I knew I was going to get breast cancer (of course nobody thought twice about it).  I'm not really known for being sane anyway.

Then earlier this year, maybe in April,  I started having pain in my right breast, just an ache on the side, nothing major.  I figured it was monthly hormonal changes, so I approached with the "wait and see" attitude.  After two or three months it increased and started to affect my armpit.  Still, I dealt with it because I just didn't have time or money for the doctor.

August 20, 2013, I was sitting on the porch drinking my morning coffee, and the pain in my armpit got so bad it felt like a knife was going through my armpit down into my breast.  I put my hand in my armpit to try and massage the pain away, and that's when I found a hard lump, smaller than a pea.  I tried to follow the pain and started pressing on my breast wherever it hurt the most.  That lead me to find another hard lump, the size and feel of a pistachio deep behind my nipple.  It was solid and fixed in place.  My stomach dropped, but I didn't panic yet, because maybe the other breast had the same thing.  It's not like had ever done a self breast exam on a regular basis.

I spent the next thirty minutes feeling every inch of both breasts.  It's not as fun as it sounds, as you can imagine my dismay when the left breast did not feel the same.  I googled, like I always do.  All signs of a lump in the breast and the armpit lead to breast cancer.   Everyone said, "Don't panic.  Women have lumps.  You're too young. It's probably just a cyst."  But I know what I felt.  I know what I had dreamed a year before.  This was it.

Then, I dreamed of my mother for the third time since her passing.  I was helping her pick out a dress for a special occasion.  It was either a wedding or a funeral; I can't remember.  But I had a closet full of yellow dresses, and we picked one out that looked wonderful on her.  I remember her turning to me, wearing the dress, and smiling at me with such pride and compassion.

The next morning, I found discussion forums and looked at symptoms of other women diagnosed.  And when I felt sure this was breast cancer, I contacted as many agencies and organizations as I could to try and get into a doctor without money.  The Komen foundation came through with grant funds.  By September 2, I was at the breast clinic seeing a doctor.

Meanwhile, more lumps were appearing in my breast, seemingly overnight.  A spot below my nipple was starting to dimple in, but probably not noticeable to anyone but me.  And my armpit lump seemed to grow from a pea to a lima bean. Within a week, I could see and feel lymph nodes all down my arm.

When I got to the doctor, she did a brief medical history (which had me at a very low risk for cancer) and a breast exam.  When she felt the newest lump that appeared only a couple days before, she said, "Oh, that's not breast cancer".  Then I made her feel the one I was concerned about.  In a somewhat dismissive way, she said, "That's probably just a cyst".  I sat up for her to feel my armpit, and suprisingly she said, "Yeah, I feel a lump.  Good thing it hurts!".  Apparently, doctors say that cancer doesn't hurt.  She scheduled me on September 10th for a diagnostic mammogram and an ultrasound.

The day before going to get the tests, Eliah's guardian angel appeared above him while he was sleeping.  I noticed the orb floating around over him on the security monitor, and went in the room to see if it was just a reflection; nothing there.  I watched and videoed the orb on the camera, and when I showed others, several said it was my mother telling me that it would be okay and that Eliah will be watched over.

 The first round of mammograms were done, and they just looked like white streaky blobs and a bouquet of balloons in my armpit.  The doctor looked at those and asked immediately for a magnified view.  So I did another, slightly more uncomfortable, mammogram.  When I saw those, I still didn't see my pistachio, but they pointed out tiny white scattered calcifications.  The white streaky parts were dense breast tissue (because of my age).  I later read that 59% of tumors are not visible on mammograms because of dense breast tissue.

Then I went to the next room for an ultrasound with the technician and a trainee (only her second day on the job).  They found mass after mass in my right breast, all grey in color (black means liquid like a cyst, grey means solid).  They counted six total tumors there, with the largest being 1.4cm.  When she went to the armpit, she found several masses in my lymph nodes, with the largest being 2.2cm, and eventually stopped counting at five or six.  I looked at the trainee and said, "I bet this is like the jackpot for you".  She agreed that it was the most interesting one she'd seen so far.

When the doctor came in, she said it probably IS breast cancer, and it has probably spread to my lymph nodes (95% sure).  I already knew she was going to say that though.  They quickly scheduled me for a biospy of the largest mass on Friday the 13th.  But when I got there, they had decided to do four biopsies....the largest mass, the smaller one that the dr said wasn't breast cancer, my lymph node, and a questionable lump in my left breast.

Monday, September 16th, I waited in torture until 10am, when I finally couldn't stand it anymore and called them to ask for the results.  The pathology report indicated, no cancer in left breast, but that all other masses, including my lymph node were positive for Invasive Ductal Carcinoma (cancer).  In addition, they were determined to be grade 3, a highly agressive form.  Later results showed that I am positive for all hormone receptors, which means it is very agressive, grows fast, wants to spread, is hard to control, and likely for recurrence.

I was felt up five times in this room.
And by the time I was done here,
that white board was full of boob drawings.
Three days later, I was sitting on an exam table talking with a cancer care coordinator, breast surgeon, medical oncologist, and radiation oncologist.  My sister drove through the night from Baltimore to take care of the children so that I could start the process of information gathering. The next day or two was a blur.  I gave blood for labs, had a PET scan to determine where else the cancer is, had a brain MRI, Echocardiogram, and breast MRI.  The few moments I was home, I was on the phone with doctors, nurses, coordinators, schedulers, and the hospital.  Each time I got on the phone, the other line rang with another urgent request.  The cancer care coordinator explained to me that I must have an angel watching over me, because there was nobody ever before that they were able to get all those tests done so quickly.  Most are a week to two weeks' wait time for each test.

They told me the PET scan was in a mobile unit. I wasn't sure if I was
getting scanned or my rabies shot behind the hospital.

Yes, I wear heels with scrubs while waiting for a Brain MRI

The Breast MRI table

Thursday night, as I was asleep in bed, I felt a gentle, but firm pressure on my body as I laid on my side, like a hug.  At first I thought Natalie had climbed in bed with me.  I picked my head up and looked at the clock, 4:30am, and looked behind me to see that nobody was there.  I knew my mother had come to comfort me.  I even said out loud, "Thank you, Mom, I needed that."  And I slept peacefully the rest of the night.

By Friday afternoon on the 20th, I had talked with the doctor, who indicated that my PET scan showed some shadows on my lower thoracic spine T10 and T11.  This may indicate that the cancer has metasasized beyond my lymph nodes and spread to my spine.  That would put me at Stage IV, advanced stage breast cancer.  On Monday, September 23, they will be doing surgery to put in a port (central line) to administer chemotherapy and hormone therapy.  Immediately following that, they will be doing a bone scan to determine if the cancer is in my spine and bones.

It has been determined that the best course of treatment at this time is to do chemotherapy before mastectomy to try and shrink the tumors.  My oncologist has said that if it's curable, he will have me walking a fine line between life and death with chemotherapy.  And if it's stage IV, he will back off a little and try and keep me a little more comfortable, because at that point, the cancer is loose in my body, which makes it inoperable and incurable.

Side note: If you don't know how chemotherapy works, it kills all fast growing cells.  This includes cancer, but it also includes red blood cells, the lining of the stomach, hair, nails and I'm sure many other things.  That's why people lose their hair while on chemo.  It will make me feel run down, maybe sick and nauseated, susceptible to illness, and bald.  They administer it approximately every two weeks.  I've been told to expect to feel like crap, and as soon as I start to feel better, they will give it to me again.

Once chemo has gone on for a while, they will look to make sure that it is working on shrinking and killing the cancer.  Then they will do surgery to remove my breasts and will do reconstruction. They are hoping that the chemo will kill enough cancer in my lymph nodes to spare surgery on all but the sentinel node (the gatekeeper).  That will save me from having Lymphedema in the future.

The other treatment, hormone therapy (Herceptin), is to block estrogen from reaching the cancer cells, as that hormone makes them grow insanely fast.  It will be delivered by iv in my port, and I will need to be on it for at least a year.  I'm crossing my fingers that it will work, as I have read that this drug does not work in 70% of patients, but it's the best option they have to work on this particular type of cancer.  I will also probably have to have my ovaries removed to help as well.  And finally comes radiation therapy.

With radiation, they will target my chest, armpit, and back (if it's in my spine).  This will be every day for five weeks at the very minimum.  The oncologist said that by the third week, my skin will be reddened, painful, and blistered like a bad sunburn.  It will just get worse from that point and my skin may potentially break down.  I won't know exactly how my skin will react, but I'm certainly hoping for the best.

I trust the doctors, and feel very good about who is in charge of my care right now.  I believe that their course of treatment is going to extend my life.  And I believe that they will do everything in their power to make me better.

That's it for now.  This is where the fight begins.  I understand better what I'm fighting against.  I understand what I have ahead of me.  It's not going to be easy, and I admit that I'm scared and intimidated.  But I'm ready to believe I can do it.  I have family, friends, doctors and angels to help me through this.  I couldn't ask for a better combination.

If you don't know, you can help follow my journey on facebook as well.  Click the link and join the group.

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Saturday, September 21, 2013

Anncredible SWAG

This is from my sister....

Ok, we now have t-shirts!! Buy a "THE ANNCREDIBLE FIGHT" t-shirt, hoodie or tote bag and show your support for Ann. ALL proceeds will go to help her pay for medical expenses and costs related to her Anncredible Fight. Please post a picture of you wearing your ANNCREDIBLE FIGHT gear! Let's decorate Facebook with a zillion pics of everyone united in the fight! Thank you!!

Here is the link to the shop to order.

You can also join her facebook group to help to support and follow the journey.

Monday, September 16, 2013

Tidal Wave- I've Got Cancer

For the past couple years, I have been travelling in the barrel of a giant wave, trying to keep my balance and sanity.  I've been teetering back and forth, caring for the kids, struggling with my ex, and trying to maintain a personal life of my own.  It hasn't been easy, but I have been patient, and kept my head up, looking for wonderful things towards the horizon.

Today, this emornmous wave has crashed down upon me.  I have just been diagnosed with an agressive form of breast cancer.  It has already spread, and I am still awaiting more testing to determine the extent.  The bottom line is, it was not caught early.  It's an awful feeling to know that something so destructive has been growing inside my body.

I am tumbling, gasping for air, and feel the full force of the shock.  A million questions race through my mind.  Could it have been diagnosed sooner?  How long will I live?  Will the children understand?  How will I have enough energy to fight this when I barely make it through a day as it is?  Am I strong enough?  If I'm not strong enough, will I feel like I've failed my family?

I'm not sad.  I trust that God has a plan.  The only fear I have is of the things I do not know yet.  But I know the answers will come in time.

As my friends, if you don't know what to do or say, maybe I can provide some insight.  It's wonderful to hear that you're there to help.  That's all I want or need.  I don't know the answers to a lot of questions being asked right now.  And I feel like I'm doing a lot of stuff to make other people feel okay about my cancer. "Don't worry, I'll be fine."  Honestly, I really don't know how it's going to turn out.

I don't have energy to talk to the many survivors that people are offering.  It's kind and generous to offer, but it's so stressful to me to try and make time for more people.  I can barely keep up.  I need time to process what is going on.  I need time to wallow, for at least a moment, in what is taking over my body.  I need time to figure out what my plans are, the what ifs, the challenges.  I just need time and support.

If you are going to pray, pray for one thing only, strength.  I do not question God's plan or ask him to change the course of my life.  I trust that he knows what he's doing.  I just ask that I am strong enough to handle what he gives.

This has been a relentless storm.  I have taken a beating over and over, and I wasn't even standing upright yet when I was hit again.   But I will fight as hard as I have to, for as long as I can.  After all, I did say I was Anncredible.