Thursday, November 15, 2012

On Being Home

I know this is stating the obvious, but home is WAY better than the hospital. Every day I am home I feel better and better.

Queta was right there was a big "Welcome Home, Mommy!" sign on the front door the girls had made for me when I arrived home Monday afternoon. We got home with just enough time for a quick nap before the girls got home from school. They changed their clothes and washed their hands and then jumped in bed with me. The first 24 hours home were idyllic. Margaret's birthday was Sunday and she said the best birthday present was me coming home. Katherine hardly left my side the first night I was home. She laid in bed and chatted with me. Then she hopped up, grabbed her homework and lap desk, and settled back in next to me and got to work. We had dinner in the family room in front of the TV (big deal in our virtually one TV house), and as we watched she snuggled and had her head on my shoulder. By Tuesday night some sisterly bickering came out and Wed morning there was a huge cat fight over quickly things returned to normal.

I feel like a third child to be taken care of these days at home as I still work on building up my strength to do simple things like walk up and down the stairs. I am trying to help Chad with what I can at night like opening the mail and helping the girls with homework but he is definitely doing the lion share of the work around the house.

The meds I was switched to before going home are definitely much easier on my system. I have traded nausea for dizziness and a bit of blurred vision. It is not great but I at least feel better. I just have to be extremely careful I don't fall since I still have a very low platelet count.

We are all looking forward to a quiet Thanksgiving week at home, although there have been tears from more than one of us about the fact that we were suppose to be flying out to Dominican Republic Sunday for a week lounging on the beach...

I go to the doctor this afternoon and am curious to see what my blood work shows. I know I feel better, I just want to see if I am clinically getting any better. It could be I am just able to sleep more at home, the food is better and I am definitely moving around more and feel like I am little by little building back my strength. I could feel better and still have totally crappy counts, but hoping there is a strong positive correlation between how I am feeling and my counts.

I also have another theory on what is helping me. In college, I volunteered at UVa hospital through most of school. For a couple semesters I was on the Newborn ICU. There they had volunteers scrub down and suit up and then hold the babies and rock them or hold their hands and rub their arms if they needed to be in incubators. They saw infants that were held and touched more improve faster.

In my hospital stay, when you are on isolation half the time and your immune system is so dangerously compromised as mine has been, and is, no one touches you unless they have to. At home, the girls are constantly touching me and at night I have Chad next to me. I feel like I am thriving and feeling so much better each day....We shall see what the numbers say.

Tomorrow we are also tentatively going to see a Hairy Cell Leukemia Specialist in Columbus. Fortunately for us there is one of the few hairy cell clinics and specialists in the country so close by. A good friend was able to get me an appointment with him for a second opinion on testing and next steps if we need another round of chemo. He is "out of network" from a health care standpoint. I just had someone from his office who does insurance call to make sure we understood what that means. We knew we had a new deductible and new out of pocket max, which is fine We did not know that unlike "in network providers" where once you meet your max insurance pays 100% of the contracted rate and the rest is "forgiven" or discounted. When someone is out of network you are responsible for the difference between the billed rate and the contracted rate which we have already seen is a staggering difference. So it is clear my treatment and any testing that needs to be done will continue to be at UC, but hopefully we can get some ideas from this doctor on next steps on treatment that will not be as hard on my body, or require such a long hospital stay.

Will let you know how this afternoon and tomorrow goes...


  1. So glad to hear you are feelig better. Good luck today! Irene

  2. I am so happy you are home Beth! Take it EASY on yourself - you're going to start to think you're ok to do more things when you should be bored out of your mind resting. love becky h.

  3. What a lovely post on being home and the therapeutic benefits of the physical touch of Chad and the kids. Beautiful! Good luck today and tomorrow!

  4. Beth, that first paragraph makes me cry (with happiness). Keep getting better.