I haven’t written anything on my blog for many weeks. I remember that for a couple years running I averaged writing 2-3 posts each day. All the topics I used to be so passionate about - politics, education, social issues - are no longer that important to me. Since I can’t really seem to stay on one topic for long, I will just write a series of disjointed thoughts and wonderings.
I can’t stand to watch the national news on TV. If Ron watches CNN or MSNBC, I generally will either leave the room or else tune it out by reading or working on the computer.
I looked at Lily today and I couldn’t even visualize what she looked like pre-leukemia. She felt good today, and we had a good time. However, she’s so terribly thin, her hair has started growing back, and it’s about an eight of an inch long all over. Most kids don’t lose their hair the first month of ALL treatment - but Lily did. Then most kids DO lose their hair within a couple weeks of starting the chemo phase she started several weeks ago, and she didn’t. She’ll likely lose it all again within the next few weeks, though. Then when she starts long term maintenance, it should start growing back for good.
School is out for the summer. A little over ten weeks of freedom. For the first time in memory, I have absolutely no plans for a vacation trip of any kind. No desire for a vacation either. I will spend time at home - trying to have a sort of rhythm to my days. I will spend some time visiting my mother. And I will spend time with my husband, children and grandchildren. I hope that in the summer of 2010, our little family - Ron, me, kids and grandkids - can go to the beach again for a week.
As the weeks and months have passed since Lily was diagnosed, I’ve come to understand that this has changed our family forever. Each of our lives have been impacted in ways we never imagined. The fear of cancer - of relapse - will never go away.
It’s a strange feeling - a combination of envy, anger, sadness and acceptance - when I see healthy children - children playing sports, children talking of going on family vacations, children with beautiful hair. Today I watched as Lily helped to administer antibiotics into her port. She pushed the syringe a little and then drew it back until she saw blood begin to flow (indicating it was working) and then pushed the rest of the solution into the port. An 8-year old who is comfortable - even eager to demonstrate her ability - with injecting medication into a port that’s been surgically installed under her skin with a line going into the veins around her heart. Incredible. Inspiring. Sad.
I wonder when the “buyer’s remorse” that is inevitable with our new president will begin to set in for the folks who thought he was the answer to all their woes. What a disaster of policies the man has made. The absolute blindness of so many in the MSM and on the left no longer amazes me. It’s just wrong.
Larisa and Steve are thinking about getting Rosie certified as a “companion dog.” It wouldn’t be a difficult process, and then Rosie could go with Lily to school, shopping - really anywhere Lily goes, Rosie could accompany her. In the ER the other night, I watched helplessly as Lily cried for Rosie and cried, “I want to go home.” It was heartbreaking. It was one of those times, I thought of all the millions of children asleep in their own home - healthy - who had no idea of what a blessing it is to sleep in one’s own bed.
I attended Sophie’s kindergarten graduation program. It wasn’t really a graduation - just a program for parents and grandparents on the last day of school. Sophie, the precocious and funny little sister who has had to grow up quickly the past few months. Sophie, the child that just cracks me up with her humor and remarks. Today, Ron was trying to get the mule to work. He finally got it to start running but when he shifted gears, it died again. He let out his anger - keeping it clean since the grandgirls were there. Sophie looked at him, “Papa, are you frustrated?” Yes, he was.
It is interesting to me how consumed I am with this whole leukemia business. I am obsessed with checking Lily’s Caringbridge site. I read every comment people leave. It doesn’t matter if I’ve been with Larisa, Steve, Sophie and Lily all day, if Larisa makes a new post on the CB site, I rush to read it immediately. I check the leukemia discussion boards numerous times every day.
I have an addictive/obsessive personality. It is fortunate that I’ve never much cared for the taste of alcohol or cigarettes. So my addictions go to other things instead. When Lily and Sophie spent the night with us a few months ago, they had some homemade gift soaps that someone had sent them. They loved the soaps - setting them out along the edge of the tub, and then spending more time selecting which soaps to use during their bath than the actual bath took. So I looked into how to make soap. With a “melt and pour” soap base, it is easy and fast. I ordered the supplies - lots of supplies. And since they arrived just yesterday, I’ve made four or five batches of soap - experimenting with different colors and scents. Then today the girls and I made three batches. So my obsession for now is making soap. This will probably last a few weeks, and then I’ll move onto a new obsession. Last summer I was obsessed with making jams.
I’m not an animal person. I’ve never enjoyed having pets. However, I have really enjoyed the two kittens that Terry and Sheila gave us last month. They are such a joy to watch. They get along well with Jake - they all seem to enjoy being together.
I had four moles removed from my body during spring break. “Removed” is a gentle word for what was done. Actually they were sliced off my body. All four were biopsied. Two were fine. One was “mildly abnormal,” and another was “moderately abnormal.” I had an appointment to have more tissue from around the moderately abnormal one removed this past Monday. However, as it turned out, Lily was in the hospital that day and I was needed to take care of Sophie. So I called to reschedule. The earliest appointment was over a month away. The doctor only does “surgery” on Mondays. I don’t want to wait that long. So I’m looking for a new dermatologist. I didn’t like the one I went to anyway. She looked like she was about 15 years old, and she didn’t inspire confidence at all. Of course my dentist is “Dr. Missy” - so I have other young doctors as well. I guess I’m getting to the age where just about all doctors are younger than me.
Speaking of Dr. Missy, I’m scheduled on Tuesday for her to do some complicated work on my front teeth. I don’t feel particularly confident about her either. I wanted to have “sedation dentistry” for the dental work on Tuesday, but with all the crap going on in our family, there is no one to go with me to drive me home. And Ron will be out of town. So I guess I’ll tell Dr. Missy to go heavy on the nitrous oxide instead. Then I think I’m such a wimp. If Lily can go through all the medical stuff she has to go through, then I can certainly get through a little dental work without making a fuss.
Speaking of my current obsession, I’ve been planning my next batch of soap. I’m going to blend some oatmeal into a powder, buy some almond oil, and then Ill make a batch of oatmeal/almond soap. I will peruse the grocery store the next time I go to see which herbs, spices and other ingredients I can find that I can use with soap. Don’t ask me what I plan to do with all this soap. I’ll use it, of course. . . . eventually. It will last a long time. Especially considering that after making those batches yesterday, I ordered more supplies.
One goal for the summer is to have more “rhythm” to our lives - a regular dinner, keeping up with chores around the house, going for a long walk each day. I just can’t handle working full time and then doing things at home in the evenings. So things around the house have fallen by the wayside over the school year. It’ll be nice to have a slower pace and a peaceful rhythm to our lives for awhile.
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