Monday, May 18, 2015

Breathing in Loving Support

Today, when doing my usual stuff I felt short of breath. Mark called the clinic and when we got there, my oxygen saturations were 87%. I was put on oxygen and a home oxygen delivery was ordered and en route to my house. Since, my hemoglobin was 8.7 the last time I had labs drawn, I was told to go to Mercy Hospital's Short Stay Unit and get some packed red blood cells. Mark had to get back to work and I had to run home first, because we have kids and a dog...

My mom worked the overnight shift at Children's Hospital last night, but Mark had been keeping her updated, so she was awake. She picked me up at home and went with me to the hospital to keep me company. Since my portacath was not accessed and apparently Short Stay Nurses don't access ports here, my nurse had to call the Vascular Access Nurse to do it. My mom offered to do it, but they refused, citing their hospital policies. We waited. The Vascular Access Nurse arrived and accessed my port. I asked about drawing a crossmatch, since I have learned they also have policies about using clinic-drawn blood for crossmatches. Once this was done, we waited for the blood to arrive and infuse over a couple hours. We talked, looked up fun stuff on Pinterest and watched Ellen. They must have been busy in Short Stay or short-staffed. My mom ended up violating some of their hospital policies by silencing my pump and switching my empty blood bag over to normal saline at the end of my transfusion. She could have heparinized and deaccessed my port, but we had to wait for an Vascular Access Nurse to come back and do it. Seriously! 

Leaving Short Stay, my mom commented that I had a definite bounce in my step after getting blood. I could feel it. Energy. My mom is always kind of disoriented after working her night shifts and she asked me what day it is.

"It's Monday." I said.

"I wonder if Donna is here? Doing her grief support group?" Donna is a nurse who worked with us at Children's Hospital until she retired a couple years ago. She continues to share her many gifts with many, many people, as she encourages them to explore their feelings and talk about hard things... like death. She believes growth, meaning and light can be found in our darkest of days. She also knows the healing power of laughter and hugs. Donna moves through this world embodying love, compassion and JOY! I am grateful to know her. 

"Let's find out." I said.

"No," my mom started, "I don't want to interrupt her."

"Let's just look. I know where some meeting rooms are."

We went down the elevator to the basement level. We peered into the meeting rooms, but they were all empty. 

When we returned to the main level, I asked the woman at the Information Desk and she pointed down the hall and sent us in the right direction. 

"Sarah," my mom said, "I don't want us to make a spectacle of ourselves at a grief support group."

"Let's just look." I said, heading down the hall to a room where people were just getting settled into chairs with some still standing in the doorway. A man asked if he could help us. We told him we were looking for Donna, who facilitates one of the support groups.

"Oh, I know where she is. I can take you there." 

My mom gave me that mom look. "No," I said, "we can find it, if you just tell us where to go." 

"It's no problem." He starts leading us to an elevator. He added sympathetically, "This must be your first time at group."

"No, we are not here for the group." my mom said, looking horrified, "We work with Donna and happened to be here, so we just wanted to say hi, but if everyone has already broken into small groups we don't want to disturb her."

"It's really no problem." He assured us, so off we went.

When we got to the second floor, we could see Donna's back turned to us as she sat among a group of people in front of a large window overlooking nature and trees. Seeing the gentle sway of the leaves against the evening sky, I understood why she had chosen this spot. We stayed back, while he went forward and tapped Donna on the shoulder and whispered into her ear. Suddenly, she sprang to her feet, turned to face us, threw her arms into the air and made a sound I can only imagine people must make when they win the lottery! She turned briefly and excused herself from her group, then rushed over to us laughing, her arms open wide for hugs!

We told her how we happened to be at the hospital on a Monday evening and how we were delivered to her group.

"Donna, I am so sorry," my mom said laughing. 

"For what? This is awesome! You made my day!" After another round or two of hugs, Donna leaned in close and said, "I love it! Only you two would be brave enough to crash a grief support group!"

Friday, May 15, 2015


On Monday, I had the beading procedure done. Since then, I have had a lot of pain. These tumors are not going quietly. 

After giving these beads a chance to work and giving my liver some time to heal, I get to do this all over again.

Thursday, May 14, 2015


You may notice that I have a tendency to speak of myself using the word "we". We have breast cancer. We have tests, radiation, get chemo, feel sadness, loss, hope, love, JOY and gratitude. In the face of all that Cancer is, we live, we cry, we laugh. I think of my life in terms of we, because of you...

From the beginning, you jumped on this path with me. You held me in your thoughts, held me in your prayers. You have given me your time, your money, you have cleaned our house, cared for our children and dog, you have organized fundraisers, you have wrapped me in prayer shawls,... and helped me continue to live my life true to me. 

I am blessed to have you in my life. I am grateful beyond measure. Thank you...

Friday, May 1, 2015

Angiograms- mapping my Liver

Today, I went in for an angiogram, which is a test that uses Xrays, dye and fluoroscopy to take pictures of the blood flow through veins and arteries. Using this information, the doctors will map of the blood vessels in my liver. They will know which blood vessels go to the tumors and will block those coming from the tumors. The radioactive beads will be inserted into the tumors where they cannot get out and travel to other places in my body. They will work on the tumors from the inside. 

This procedure typically takes a couple hours and though I was given meds to help me relax, they need me to be awake enough to respond to questions and report what I am feeling. The hours ticked by. The doctors doing the mapping were getting frustrated. Apparently I have very complex vascular anatomy. Most people have 2 main vessels on each side of the liver, I have 4. Also, my blood pressure which normally runs low was trending even lower, so they ended up giving me 4 liters worth of boluses during the procedure. I had to pee! The doctors had the catheters in place and I couldn't be moved. I was told to 'just pee.' Well, I haven't peed my pants since I was a small child. I waited as long as I could with tears streaming down my face. When I could hold it no longer, I just peed and cried some more. My procedure started at 8:30am and I didn't end until around 3pm. Ugh! 

Next week I get to have another angiogram to ensure that the blood flow from the tumors is blocked. Hopefully, it will be easier than this was today!