The Angel Foundation Art Show- with Natalie

Our little Olivia was born to a mother with breast cancer. She has never known me without cancer. For these past six years, Natalie and Larissa have lived with a mom with cancer. They have feared my death, seen me in pain, experienced the me on hormone therapy and prednisone which is not pretty, but is the only me I've got sometimes. There are a million things I hoped to teach them, milestones in their lives I looked forward to sharing. They have felt the rush of trying to fit a lifetime into today with a mother and a father who hope to balance cancer with memories of time spent together... still, life goes on and laundry needs to be folded, dinner made, dishes washed, stories read...

Our family has been blessed by some Angels in Minnesota, a group of people who understand that life does go on and who want to help. The Angel Foundation assists families who have a parent with cancer in financial ways by giving families grants for non-medical bills, rent, food and gas. These are basic things often overlooked or juggled with medical expenses. The Angel Foundation blesses families with love and support, especially to the children of parents with cancer. We have participated in The Angel Foundation Family Days, Summer Camps for kids and the Teen Outreach Program. My children are encouraged to explore their feelings and talk openly about cancer. They have laughed and cried with new friends and learned they are not alone. Even something as horrifying and feared as cancer can be looked at, questioned and reframed when in the safe arms of an Angel. 

Natalie participated in the Winter Photo Project "What Cancer Means to Me." The 12 teens worked with a local photographer (who had cancer himself as a teen). He worked with them, listened to their stories and taught them how to show what cancer means to them in one photo. This afternoon, The Angel Foundation hosted a Photo Exhibit of all the photos and as I walked among them, I was struck by the honesty and wisdom of these young people. 



Natalie's photo shows her with a piece of tape over her mouth. There is a smile drawn on the tape. Arms are coming at her from many angles around her, holding signs with questions written on them.

Her caption:

They just want to see a smile!

Natalie Landis

Age 14

My mom has has stage four metastatic breast cancer since 2009. I am a soccer goalkeeper. I can eat a whole pizza. I have gone cliff jumping.

When you have a parent with cancer and someone asks how you are, you might want to cry but you know it is best to have a smile on your face rather than tears. In my own experience with cancer I have noticed that you can't just tell anyone the truth about what is going on at home because they will not understand.If you are not going through the experience with or with someone close to you with cancer don't just ask about the cancer patient also ask about the people related to the cancer patient because the perspective is different than theirs.

Biopsy

Step one: Here we go. 

Olivia came down with the stomach flu last night, so our plan changed a bit.  Mark dropped me off at the hospital with my mom planning to meet me there and later give me a ride home. 

We wait. I look around. At the hospital where I work, we have transport carts and wheelchairs to move patients to and from procedures. It strikes me as funny that here at Mercy Hospital you go most everywhere in your bed. We wait some more. I sign a few consent forms without really reading them. Same stuff, different day. I bring my camera, so I can take a picture, but instead I get a big speech on why I can't take a photo of the tumor. MY tumor, mind you, though I would be happy not to claim it. 

My mother is sequestered to another room with a stack of magazines. As my bed is pushed and pulled into the room, my heart sinks. This is the very same room I was wheeled into over 6 years ago. The same room where an ultrasound confirmed that I was pregnant. The same small animal chair in the corner that Larissa had sat in. The same mobile of colorful birds on the ceiling, gently circling above me. I feel myself transported to that day. The doctor and ultrasound tech measure the baby. We listen to her heartbeat. They happily take a picture of the image on the screen that day and put it in my hand. I struggle to look at it, slipping on that slippery slope that promises life is easier, love is easier, loss is easier somehow if hearts are protected from all things unknown. Empty promises. Outright lies. 

Today, they numb my skin. The ultrasound goo is farted onto my abdomen, the  transducer slides around while the doctor and the ultrasound tech discuss the best path to the largest tumor in the right lobe of my liver. A frighteningly long needle punctures my skin between my ribs and a sample is collected. Quickly, this part is done.

Two transport aides- either on an very tight schedule or on a mission- race me back up to my room where we wait to get the ok to go home.

Results: The liver tumor is ER+, PR-, HER-. My previous biopsies were all ER+, PR+, and HER-, so these tumor cells have changed/ mutated. Dr. Laudi does not change my current treatment.

Catching up

I know this post is dated for April 16, 2015, but today is actually June 29,2015. These past months have been busy and exhausting- both physically and emotionally. I have been more focused on living than writing about living. I have needed to just sit with some recent developments as I process them inside myself. Please refer to the blog post dates- which is the actual date the posted things occurred- while I try to catch up...  

Two Bottles Down- Ibrance (Palbociclib)

We finished the second bottle of the Ibrance. We did a CAT scan to mainly to look at the liver. Dr Laudi said the bone mets are stable, but the liver tumors are bigger. There are also 100+ small to medium size tumors in the lungs. I'm not sure if they get to a certain number and stop counting. Dr Laudi talked about things we could do for the liver tumors.  I asked to do a biopsy of the liver tumors because they are not responding to treatment. I know Cancer is smart and changes over time. Here is a look at my liver:

Left is April. Middle is February. Right is November. 
The largest tumor is on the top left of the liver. 

We talked about an internal radiation treatment, freezing the tumors and radioembolization. Dr Laudi felt the radioembolization would be best choice, because tiny radioactive beads are placed within the tumors targeting the tumor cells meaning better results.

We talked to the surgeon that would perform the radioembolization. We discussed the good the bad and the ugly. The good: if successful, it could buy me 6 to 11 months. The bad: only 11 months or less or none, if not successful. The ugly: multiple surgical procedures before beads are placed and only one lobe of the liver can be done at a time. 

Procedures:
1. Biopsy of the liver tumors.
2. Angiogram of liver to map the blood vessels and tumor blood supplies.
3. Place the beads.
4. CT scan to see if it's working.
5. Repeat on left lobe of the liver.

If all goes well, I may be given more time. It may seem like a lot to go through for a small gain, but I remind myself that every chemo or new drug I have tried has allowed me to live with Stage IV Breast Cancer for nearly 6 years! 

Six months... I would see Mark turn 37, Olivia turn 5 and start Kindergarten, Natalie start 10th grade, Larissa turn 11 and start 5th grade. We could take the Paris trip that has been on hold. There would be sunny days at beach, drippy ice cream, camping, fishing, teaching Natalie to drive, Natalie starting another soccer season... I will fill those months with laughter and memories and JOY. I will give my time to all of the above. I will deal with frustration and pain... if only to have one more summer...