Thursday, June 28, 2012

The fight

So yeah... There's still a breast cancer in my body, and I'm fighting it. I was actually accused of NOT fighting the other night. Not fighting huh?! You think I want to be Vegan?! You call sitting and waiting at Dr's offices, injecting my self with radioactive dyes, spending my weeks researching, reading books on cancer, calling Dr's back, waiting for test results, praying every night, visualizing pac man's eating the cancer in my body any free second I get, getting hypnotized, and signing bilateral mastectomy consent papers NOT fighting? If it isn't, please tell me what fighting is.... Do I need a cancer t shirt or bracelet to prove that I'm fighting? I think not.

Watch out what you say. Please be gentle. I'm hurting inside and out. Please have compassion for me. I'm fragile.

The surgery is scheduled for July 12. I demanded that they make this appt the day after I met with the surgeon. I've tried to move it up because I want to get this show on the road. I want to get this done as soon as possible so that I can get chemotherapy and most likely lose my amazingly, beautiful, thick, shiny hair and possibly get sores in my mouth. Then maybe I'll get radiation therapy because the tumor is about or over 5 cm, but they won't know that until I'm under the knife and my breast tissue is removed during an 8 hour procedure. I don't have the gene, but I'm opting to get both done for symmetry reasons and moreso to lessen the chance of recurrence in the other breast. I'll have to be in the hospital 3 - 4 days away from my 6 month old and 4 year old. As an attached parenting practitioner that in itself is heart wrenching, but I must remember that this is for the better in the long run.

And all of that isn't fighting? I'm certainly not doing this for fun or a hobby. I want to live. I want to live and be healthy for my kids. They make me tick. Well that and tattooing. And you guys... All of you true supporters are truly inspiring and give me hope. The people that are selfless. The people that have supported me and helped me through this journey thus far.

You know who you are. You are truly helping me selflessly on MY terms. I'm eternally grateful for all that you do. The women who pump when they HATE it, but do it because they want to help feed Joslyn human milk because that's what I wanted. The women who are couriers and pick up the milk and bring it to me or other peoples' freezers for storing. To the ladies who bake lactational cookies and send them in the mail to complete strangers in order to boost their milk supply so they can pump additional milk because they're not lactating yet they want to help. To those of you coming to my house and watching my kids or driving them around to where they need to go. To the kind people who have cooked for us using our pain in the ass dietary requirements and bringing us delicious and nutritious food to eat. Thank you to the those of you who are really listening to me when I want to vent about what being diagnosed with cancer makes me feel and give me words of encouragement when it's needed. People who have sent me prayer cards or books to help give me insight in this crazy new life that I've been catapulted into. Folks that have donated their hard earned money as to help our family financially so that I might not have to stress after surgery or during treatment when and if I can't work because my family depends on my income to sustain this household. THANK YOU ALL.

It's odd how cancer can make you so grateful.

You all know that I'm fighting. I have a passion for life. However many ups or downs, I'm enjoying my time here. Especially now. I cherish every moment with my children through the cries and laughter and maybe not so much through the whining and tantrums. And through the tattoos - the big ones and small ones. I really do love people. I love to laugh and even crying. I love living. Help me live. Join my fight.

Monday, June 18, 2012

Tonight was rough. Joslyn has tried to find the breast for comfort, but tonight she really wanted it. She whined and cried and kept rooting her way down my chest. The binky wasn't doing it for her nor were my caresses, lullabies, or rocking. The milk let down, my shirt is wet, and I cried too.

I couldn't have breast fed her anyway. There could still be residual radioactive dye running though my body and going through the milk due to the MRI I had Thursday. Tomorrow I could officially feed her my milk because even though I haven't pumped for a week tomorrow, I'm still lactating. But I can't anyway because the hormones that facilitate lactation in my body could potentially feed the cancer in my right breast.
I had a natural drug free birth because I was determined to succeed in getting Joslyn to latch unlike my son. I gave up with his latch because my husband was out of work at the time. I had to go back to work as soon as I healed so I went back at 4 weeks with him, and my husband didn't want to have problems bottle feeding him. I pumped breast milk for him for 20 months for my son.

When Joslyn latched immediately after she entered this world, I was ecstatic. She was a pro. She was a grazer and she grazed so much. My nipples were cracked and bloody, and bacteria came through. My milk came in, and I came down with mastitis, an infection of the breast that causes a high fever and flu like symptoms. It didn't go away. My breast developed abscesses. I saw a breast surgeon, and he drained them with needles twice.

Then I went back a third time the first week in February because I felt a hard lump on the right side. I asked if it was an abscess, and he tried to drain it with a needle and syringe with no luck. He said, "Well there's no fluid coming out. It's probably just inflammation from your mastitis that will last for quite some time." He sent me home, and I had no worry in the world.

No follow up, no ultrasound, no biopsy until four months later when I called him because I still had the lump and thought it was a plugged duct because it seemed weird that I could still has inflammation so long after mastitis four months ago. Finally he stuck a needle in it again, and he still didn't get any fluid. He biopsied it, and it is cancer.

The one thing that is good about him being negligent is that I got to breast feed Joslyn for 4.5 months on the breast. I got to cosleep with her for 4.5 months and barely wake up though the night to feed her. We both slept through the night every night, and sometimes I'd wake up in the middle of the night and stare at her. She's so peaceful when she sleeps. She rarely cried for me until now, and now I cry too.

Saturday, June 16, 2012

Break time

Today is Saturday. No Dr appt.'s, no surgeries, no tests. I'm starting to feel like a pin cushion so this is a relief. I had three IV's this week. One blood draw besides that. Radioactive dyes, heavy metal solutions, and blue dye flowed in my veins. Heck, I even peed blue all day yesterday. It was as bright as Kool Aid.

This weekend I recover from the surgery and am brainstorming on fundraising while my head isnt swimming with the cancer fight. I'm trying to do leg work and find people to donate items, services, gift certificates, art, etc.because we're going to hold a "Beef and Beer". It's a fundraiser typical of South Jersey. I never even heard of them before until we moved here almost 4 years ago, and now I have cancer and am having one for my benefit. Lucky me...

We really do need money because I can't work right now. I need a clear head to tattoo. Not to mention my armpit is pretty sore right now from surgery yesterday. I'm hoping that during chemotherapy I can work. Everyone says I will and I'll be psyched to tattoo again. Heck these days I find joy in changing a stinky diaper. The little things really are the best things in life now.

The night I got that phone call I didn't eat anything. The first thing that popped in my head was to go completely Vegan and cut out refined sugar. After speaking with someone I know and love who was in remission, I decided to cut out fruits too because the body can't tell the difference from each type of sugar. Also processed soy products can act like estrogen in the body and feed cancer so I'm cutting that out too. However the cancer I have is estrogen negative.
The candida diet was recommended to me and eating local organic meats, but after watching "Forks Over Knives" and similar documentaries, I think that I'll stay vegan for now. I'm also avoiding anything out of a box containing ingredients that I'm unfamiliar with.
Please let me know if I can eat fruit. My diet an be so boring. Regardless I need to get into fighting shape. 'Nothing tastes as good as life feels"

Friday, June 15, 2012

Sentinel node biopsy

Today we had the sentinel node biopsy. The preliminary test came back negative for cancer in the lymph nodes, but we're awaiting the full testing results in 7 days. The preliminary test is 98% accurate, though. Fingers, toes, arms, arms, and legs crossed.
It feels like I got knifed in the armpit. Therefore I'm glad it's the weekend do I get a break from tests and docs do that I can recover from the minor surgery.
Next week is more testing and meeting more docs. They found another questionable area in my other breast via MRI so that means I need an ultrasound and possibly a biopsy done with local anesthesia. I meet with another oncologist and a plastic surgeon. So I'll be running around like a chicken with its head cut off again.

This face helps me through this. (and my son's face too)

Thursday, June 14, 2012

The game of Life

After meeting with the oncologist today, I feel as if we're on a tight time schedule. I really want this tumor out or mastectomy asap. However, he's suggesting that we should try to do chemotherapy asap, adjuvent chemotherapy, even before surgery to shrink the tumor and also obliterate any cancer that might be in the rest of my body.

My fear is that the cancer will place itself in the body elsewhere while the chemotherapy is being done, 6 months, or that the chemo won't work. There is no doubt that I will need the chemotherapy.

We did the genetic counseling too. It's presenting itself like I could have the BRAC 1 or 2 mutation. So far it's PR and ER negative. The her 2 should come back today.

Last night I spoke with the surgeon, and she somewhat eased my mind. The day before my mind was set, and the oncologist spun the top again. My head is swimming. She suggested getting a second opinion with an oncologist that she thought would fit my personality. I'm playing the game of LIFE and spinning the game piece waiting for the next turn.

Today I'm getting an MRI and a third opinion for the surgery aspect. Oi vey... How crazy my life has become. I'll take tattooing over having a disease. Tomorrow we might be hang the lymph node sentinel surgery and extraction if there is cancer in the lymph nodes. If not tomorrow then early next week. My fears of going under anesthesia must be out aside.

The simple things are so pleasing now.

Wednesday, June 13, 2012

Another day at the hospital

A week ago and beyond we were planning a family summer vacation. Until last Wednesday night when everything changed with one phone call. Thank God my friend was visiting and there with me when I got that phone call.
Yesterday my mind reached another level of calm within the storm. We met another Surgeon, whom I feel very comfortable with. She put my mind at ease when she explained why we should do what we should do. She said that the other Doctor created something of a frenzy because I'm in a 1% group of people who get breast cancer while pregnant or post partum breast feeding. People get scared and worried more because we are rare. The mammographer said she's only seen a few of us in 15 years.
So after the Dr I felt even more empowered to overcome this. A friend said to me, "cancer who?". I am woman hear me roar.
Then the testing began. All day I was bouncing back and forth from building to building in the rain mind you. I had to fast all day except for drinking Barium sulfate. The funniest was the mammogram. She'd squish the breast and milk was squirting out.... Everywhere.
The only info I found out was from the radiographer on the ultrasound/mammogram. The mass is 4cm by 1.9 by 3.6. That's all I know. My great friend and mentor, who beat cancer 5 years ago, said to me that they're going to find spots but don't worry.
Today is busy too. Oncologist appt then genetic counseling. In two weeks I'll know of I have to get a mandatory mastectomy and possibly a hysterectomy if I have the mutated bracce gene. The oncologist will let me know what he thinks of the tests yesterday, if/what we need further tests for, and if my arm veins are good or if I'll need to have a port installed into my chest. There's no doubt that I'll be getting chemotherapy at some point.
Tomorrow is busy too. Another appt with another surgeon. MRI of the breast.
Friday is surgery to test and see if the lymph nodes have cancer in them.
Friends please be there for me. Help me to be strong. Help keep me positive. We will need a lot soon.

Tuesday, June 12, 2012

Testing 1,2,3

Last night sleep was nearly impossible because of the impending day lined up. This morning I have to stop eating and drinking at 7:45am. We're dropping off my son at nursery school then heading one to a new breast surgeon, Dr Anne Rosenburg. People have said she's the best. She's funky with taking insurance so we have to bring a nice chunk of cash for her this morning. We'll do what we have to do to come up with the money if she's the right surgeon. Then we have to speed over to do some testing at 11:30am. Bone scan injection at 11:45am, Cat scan at 12. Chest X-Ray at 12:30pm. Then there's a break to eat. Bone scan at 1:30pm. Then we're done for the day.

Tomorrow is an Oncologist appt at 9:15am.

Thursday we have an MRI of the breast and meeting another breast surgeon at 2:30pm.

Welcome to my new job. Sometime in there I have to get blood work, and there's another surgeon that I wanted to meet up with. I've been talking with cancer survivors, plan to go to a meeting, organizing milk drop off.'s. Although I created a Facebook group called, Human Milk for Joslyn. In only a few days we have 95 members. People who are interested in donating breast milk, being a courier, baking lactation cookies, storing milk in their freezer. This group gives me hope.

Friday, June 8, 2012

I guess now this blog should be called Tales of a Tattoo Mom with an extremely aggressive, invasive breast cancer. A biopsy came back the other day, and it says that it's aggressive invasive ductal breast cancer poorly differentiated. I'll post the pathology for you to see. (two people were concerned that someone would steal my identity so I took it down)

I'll share this with every one. I can't do this alone.

My lactating is coming to an end. As I type I have cabbage leaves on my engorged breasts in hopes to slow the milk production. Unfortunately the hormones that cause breast feeding might feed the cancer. I didn't believe that at first. I wanted to breast feed my little girl until she was old enough to lift my shirt and suckle on her own if she wished to do so. I wanted her to self wean when she was ready, but everything has changed. Now I can only hope to be around when she's that age.

I'm reaching out to lactating mom's out there to acquire donor milk, and so far it's working. South Jersey/Philadelphia has an amazing network of breast feeding women. Social media has helped ia greatly especially in the birthing, breast feeding, and babies Facebook group. Thank you, wholeheartedly.

We now have our own Facebook page called, Human Milk for Joslyn. Please add if you want to help even if it isn't donating milk. We are looking for people who can be couriers, supply sterile bags, or even bake oatmeal cookies for gals to build up their supply.

We also have a group on and Team Tegan. Soon enough we'll be putting duties up there you can sign up for. We'll need sitters, drivers for rides, people to cook meals, clean, do errands, walk our dogs. If anyone does healing services and wants to donate time, there's a massage table at the house already. Prayer chains are welcomed with open hands.

We're also accepting monetary donations. I'm unsure how much I'll be able to work through this time, and we depend highly on my income for our bills and rent. Because I'm self
employed, I'm not eligible for any government assistance. There will be benefits held in MA, NJ and possibly Fl and Philly. Also we're accepting Paypal donations via my website, In addition to that you can join our human tribe. It's a necklace with a 'T' on it.