Music

In this video during the line, "And so my needs are great," they show a women with a head scarf. I got a little thrill at seeing that. It is sort of like when L sees girls in The Friend magazine with glasses on.

It also reminded me of the ability of songs to give comfort. I lean towards "Lead Kindly Light", "I Need Thee Every Hour"(a family favorite), "Come Thou Fount", "Amazing Grace", and Primary songs about family. It is hard to imagine my life, especially recently, without music. I am grateful for the music my kids play on the piano, the Mormon Tabernacle Choir cds my relatives send me, the opportunity I had to learn part of the Living Christ set to music, carpool singing, girls' camp songs, Sesame Street and baby songs, and all the other music in my life.

Sisters' Day

With L, C, and Baby we celebrate Sisters' Day the 2nd Monday after Mothers' Day. Brothers' Day is the 2nd Monday after Father's Day. L asked about Sisters' Day and I told her I was too stressed out to think about it, and we could celebrate it in the summer. Then my sister called and asked if L was excited about Sisters' Day because this would be the first year Baby and L would share it. After that I decided I could do the celebration this year. We marked Sisters' Day on May 16, and then began the preparations.

In addition to calling my sisters, I also celebrated the day by my signature on the release form for further genetic testing for the breast cancer study I am in. The release form had a place for my signature or the person responsible for my estate. I was glad I could sign it, though I know my husband would sign it if he had to. He knows I would do anything to help others understand more about cancer, especially the risk for my sisters.

I like how at the end Paul Goodfellow talks about how studying the rare events (like early onset breast cancer) can help with more general problems.

Lymphedema

(from mayoclinic.com)

Before I had cancer I had not really heard of the lymphatic system. Then I had a few of my lymph nodes taken out of my armpit to test to see if the cancer had spread. The first time the cancer reached my lymph nodes. The last time I had cancer they took many lymph nodes out and the cancer had not spread. I started to learn a little more about the lymphatic system.

Along with the lymphatic system, another new word I became acquainted with is lymphedema (lymphatic obstruction). The affected limb has chronic swelling. A common cause of lymphedema is removal of lymph nodes. I worry about this happening. The doctor, and other breast cancer survivors have recommended a few preventive actions. The three main things I always hear are to not overtire my arm, to drink plenty of water, and to try to prevent cuts on my hands and arms.

I carry Baby with my bad arm (right side) because my left chest side has a port in it. Once Baby slammed her head into my port I switched sides carrying her. On a related note, when I had my port flushed this week I applied the numbing lotion to the wrong place. I found this out when they punched the needle in. The nurse showed my how the port had moved down 2 inches. Which I then remembered, but had forgotten in my rush to apply the lotion, get Baby ready, and drive to town. I think that my not overtiring my arm is not doing so well right now, but will get better as Baby gets older.

The drinking water situation is okay. I like drinking water, but I just sometimes forget. The old Southern Nevada habit of drinking water all the time has eroded away.

I am pretty careful about getting cuts anywhere. The dry winter is the worst time, because I get lots of little cuts on my hands unless I moisturize well.

It is crazy the number of times I have compared the right side to the left to check for swelling. When I sleep on my right arm wrong it swells up. I will ask my husband sometimes to verify that I am not just imagining the swelling.

In addition to the swelling risk, I am also unable to have a correct blood pressure reading on the right side. When I had the C-section with Baby they put the blood pressure cuff on my leg, because of my bad arm and the other instruments on my other arm. When I went to Girls' Camp the first time, I wrote about it under my health issues. One time I forgot to remind my old doctor and they took my blood pressure on the right. Then my arm swelled up and looked like it might explode. No, not really they just got a bad reading and switched to the other side.

Beyond swelling and blood pressure, I am also supposed to avoid soaking in hot tubs and other warm pools. I was not sure why this was so I went into one to test it out. I was in it for less then five minutes and my arm started to throb in pain. Now I know why.

I joke with my sister that after I am resurrected I am will not only be able to see without contacts, but also enjoy hot tubs again.

Chemotherapy and Maragaritas

(from packagingdigest.com)

With Cinco De Mayo this past week I heard many people talking about margaritas. I had adrimyacin the first time I had chemo. It is not put in an i.v., like many chemo drugs, instead it is given by nurse in syringe. The nurses that I had would call it the margarita shot, or for me (after they found out I had small kids) the Kool-Aid shot. Those same nurses would also preach against the danger of drinking dehydrating alcohol while undergoing chemotherapy treatments.

Other alcoholic drinking related terms were often casually thrown around then and now.

The Benadryl I take before chemo would cause me to feel buzzed.
Day 3 of chemo I would wake up feeling wasted, plastered, or like the worst hangover ever.
We could pick our poison for the side effect drugs.
The chemo room full of patients receiving treatment was Happy Hour.

Baby's Doctor with the kids

I took Baby for her doctor appointment this last week. L and C came with me. Every time the doctor would ask me something about Baby they would answer. When the doctor asked about her crawling, L and C expounded on her ability to crawl whichever way and at whatever speed was best for the situation was in. She could crawl fifty different ways before breakfast and then teach a master class on crawling before lunch, according to them. Her speech was the same way in their eyes, she knew multiple words which she used at exactly the right time. In fact she was currently teaching L how to spell words with Greek roots correctly. How great to have such supportive siblings.

My version of her development was not as advanced. She is healthy and is progressing. Often people ask if Baby is doing this or that, I say she's not and then explain about her delay due to her response to a stressful family situation. Always then the person asking gives me proof of Baby's greatness and how anyone saying otherwise needs to be horse whipped. I then say how she is the last child and we are okay she is acting like a baby longer than our other kids did. This shift in the conversation gives the other person room to talk about how their child/niece/nephew/younger sibling was delayed and is still an awesome person.

Spring Cleaning

We spent a good part of Spring Break deep cleaning all the kids rooms and the three bathrooms. I knew it would be hard to go through Baby's things. It is always hard for me to accept that they are growing up, and since she is our last, that we will not need 3 to 6 month clothes anymore.

What I was not expecting was how difficult it was to deep clean my bathroom. We still had so many cancer treatment related paraphernalia. Some items I was glad to toss, other things I was sad I still needed to keep. Beyond the cancer things there were various items bringing up all different responses. All those headbands my husband got me last time my hair was coming back in, it was hard to believe I will need them for the same reason. There were so many different hair things and other bathroom products, that I either do not need now, but may in the future or I do not need now and will probably never need again.

A separate category was things I was happy to get rid of now, but know that I will need later this year when I have my reconstruction surgery. Mostly deep cleaning was a good feeling of getting to a new normal. My bathroom though was like mocking me for not being normal, and not getting to be normal anytime soon. That is assuming that I was ever normal, which my siblings may take issue with, and that there is even a normal, which I know there is not.

After we were done with that cleaning I decided to focus on anything but cleaning for the next few days. C and Baby had other plans, as he was sick with a cold, and her cold led to her throwing up. More cleaning, but at least this time with more love and less mocking.