Test results and new plan

Today at my appt, Dr. Laudi gave me the results of all my tests. -My tumor markers have gone up to 74.12 (from 43.97 in November).
-the MRI showed my mets had 'significantly improved, but there is quite a bit of residual'
-The PET scan report said the areas in my spine that had radiation were 'resolved,' but I still had diffuse disease. One breast lesion had decreased in size while the axillary lesion had grown.

Plan:
-Stop steroids
-Since Lupron only blocks 90% of estrogen, I would start Femara that would block 100% (estrogen is also found in the adrenal gland, liver and fat). Increased hot flashes were the side effects.
-Radiation to an active area in my ribs
-Zometa in 1 month
-Continue Fentanyl patches with Dilaudid prn

Mark has been reading up on Femara, or more specifically, on the possible side effects of Femara:
-Hot flashes and sweating
-Fatigue and weakness
-Nausea
-Weight loss or weight gain
-Headaches, backaches, joint pain
-blah, blah, blah
-blood clots and chest pain

To me it sounds like more of the same. As you can imagine, Mark is working himself into a tizzy. The fact is, Mark likes estrogen. He believes estrogen is responsible for me looking in his direction, for saying 'I do,' for having babies with him. Even though estrogen is feeding the cancer cells that are trying to take me over, Mark is searching for a loophole to keep estrogen around.

My mother is squeezing my hand and telling me that she would take all of this from me in a second if she could. I know that already without her saying it.

It's a sad thing to watch the people you love- hold on to the past, bargain with the future, or simply resist what is.
Sometimes, I think actually having cancer is easier than the second-hand-cancer all of you got stuck with.

Pain returns

Last night I had increased bone pain. I tried everything- soaking in the tub, prn pain meds,... but nothing worked. Mark and I headed for the ER at Mercy Hospital, while my mom and Amy came over to stay with Nan, Larissa, and Amore. It was late and I hated getting everybody all worked up. Mark had spoken with Dr. Laudi, so he called ahead and the ER was expecting us. I had an IV started and got some IV pain meds that did the trick. Dr. Laudi ordered a low dose steroid. I would also have an MRI and PET scan later in the week.

Sure enough, when I got home my mom and sister were cleaning our house.

:)

Stage IV Breast Cancer is treated like a chronic disease. Treatments are tried and continued as long as they are effective. Cancer cells can adapt and change as they try to preserve their own existance. When a specific treatment no longer works, another treatment is tried. I am asked a lot why I didn't have a mastectomy or why I am not on chemo or how much time I have left. Because I still have my hair, I don't look like a cancer patient. Part of me wishes we would have hit it hard right away, but Dr. Laudi asked me a lot questions about my life and what is important to me. He felt the hormone treatment was slower, but more gentle than chemo. He knows I am a mother and he hoped that this would cause less disruption in my life.

I discussed this with Dr. laudi at my appt this morning. "People want to know when I will die."

He paused... "People don't ask you that."

"Yes, they do. I'm not offended. They are just curious. It's a valid question."

Dr. Laudi shook his head, unable to comprehend. He put his hand on my shoulder, "Sarah, you are not going to die."

So, there you go. I am not going to die. Dr. Laudi said so (and I have witnesses).

Looking through my test results, Dr. Laudi said he is happy with my response to treatment. My CA 27-29 tumor marker is down to 43.97. The masses in my left breast are shrinking. My bones are changing. The holes left behind, when the cancer cells lost their 'food supply' and died off, are now being filled in with new bone formation. My cancer is responding.

I have much to be thankful for this holiday season :)

Halloween in Anoka, Minnesota

My parents live in Anoka- The Halloween Capital of the World!
Last year my mom and I went with Natalie's Girl Scout Troop to the 'Ghosts of Anoka' walking tour of the city. This year we invited my dad, Amy and her daughter, Coral, to come along, too. Educational, spooky fun!

Our guide wore a vintage dress covered by a long, hooded cloak. A misty rain filled the air, as we followed her through the city streets and neighborhoods of Anoka. History came to life as we learned about the the people who lived in the houses and worked in the buildings and survived the tornadoes. Not everyone survived and nobody lives forever, so Anoka has its share of ghostly spirits...

There are lights that turn on and off.
Doors that slam and lock.
Chairs that spin or rock.
And pictures that move back
to a place they used to be.
Parents awaken to a light and find their child is ill.
Strange noises in the night-
both save a family from a fire
and leave them with a chill.
A voice. A rattle. A fading form.
Merchandise flys off a shelf and hits the floor.

We were taken in. Transported. All the places we have passed by so many times, barely giving a second glance, would now stand out. Now rich and colorful with stories- they had become more than a building, more than a house, more than a winking neon jack-o-lantern.

My mom walked next to me, holding my arm as I held my aching hip. She didn't push me into the bushes, like she did last year when we passed the hedge that reportedly grabs at people. I screamed anyway, like I did before. She was startled, then started to laugh when she remembered.

On the way home, we considered what kind of ghost each of us might become. Would we be filled with benevolence? Would we be pranksters? Maybe a little of both.

More appointments...

I dropped Larissa off at Amy's house to play with her cousin, Terran, while I headed to my doctor appt.

Today, Dr. Laudi put me on steroids to see if that would help with my pain. He ordered a CT and Bone scan. Tumor markers were drawn. Then, Mark went to work and my mom and I headed to the infusion center for my Zometa.

My nurse, Lisa, used to work with my mom at Children's Hospital so they caught up while Lisa started an IV in my arm and ran the Zometa over an hour. Hearing them talking about work, made me miss work. I thought about how I had been making plans to finish my college degree, now that Larissa would be in kindergarten next Fall. I was headed for nursing school before cancer... for now, cancer is like a full-time job.

Update

We are still trying to figure out my pain control. I had my Fentanyl patch dose increased from 12.5 mcg to 25 mcg. My CA 27-29 Tumor marker went up from 66.6 on 09/01 to 73.54. Dr. Laudi said this is due to the Tamoxifen. We will redraw it at my next appt.

Grateful and Humbled

I am grateful for and humbled by the generosity of my family, friends, church, and the people I work with at Children's Hospital.

Our house is clean. Our children and dog are cared for. I have received messages, cards, emails, and calls from many people. I am the subject of many thoughts and prayers. After learning how much pain I have been in, our church offered to help us buy a comfortable, overstuffed chair that is big enough for a mom, 2 daughters and a dog to curl up in and read books. My Aunt Cindy made me a beautiful quilt in blues and purples- it looks like stained glass. People at Children's Hospital gave me a gift card for groceries and have anonymously donated vacation hours to me, so I'm still getting a paycheck (and my health insurance is paid).

I am overwhelmed. I don't know how to Thank You enough...