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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May 24th, 2009 at 8:34 pm
Carol. I am not sure it is an “obsession” to do the things you describe. I read the caringbridge report FIRST when i check email. When i see healthy 7 and 8 year olds, I think of Lily with tears. Being depressed and angry seems pretty normal…but it is wonderful that you still have been able to be READY AND AMAZINGLY ABLE to help and to find ways to interst and entertain Lily and Sophie… Anyway, it was good to read your post…they love you and I love you!
May 24th, 2009 at 11:35 pm
Maybe not an obsession but a compulsion? Whatever, I tend to get on a kick and stay with it for awhile and then move on to something else. Thanks for commenting, Mother. I can always depend on you to read my blog - even when I haven’t written in almost two months. I love you, too.
May 28th, 2009 at 5:10 pm
Carol, you are not obsessed. My nephew Tommy lost his hair, too. It grew back eventually.
He was diagnosed with leukemia at 14. Two years and a hard fight later, he passed away. A few months after that one of my co-workers told me his 8 year old had been diagnosed with leukemia. Luckily, not the aggressive kind Tommy had.
She just finished her course of treatment (2 years) and is thriving. Of course this affects you. Tommy has been gone for years now and I still cry all the time when I think of him. For two years I battled depression while he was ill. I was surprised how much it affected me.
But then I think: what kind of person would I be if I could shrug something like that off? Not the kind of person I like, that’s for sure.
Hang in there. And think of my co-worker’s daughter
May 29th, 2009 at 8:26 pm
May heart is with you…also my prayers.
June 2nd, 2009 at 4:31 pm
Carol, I’m glad you checked in with all of us who care. I’m just so very sorry this is happening to your family, and I pray God gives you and Lily and her parents strength for the days ahead. And take care of that mole!
June 3rd, 2009 at 5:58 am
Carol, feeling all the mixed emotions you described is, no doubt, normal. How could a loving grandmother not feel those things!? Perhaps the “obsessive” interests are an effort to direct thoughts and energy into a creative outlet — a healthy reaction to such stress. I agree with Norma - don’t wait long to take care of that mole!