The cracks begin to show

As the chemo begins to set in on day 7 I am suddenly exhausted. It’s not quite debilitating yet but I know that is coming. I regularly need nausea meds to eat a little meal and take all my meds. This is all to be expected for this point in my treatment and they will expect to see good days and bad days. It’s already time for more chemo tomorrow. I’ve gotta keep moving on.

I’ve continued to have problems with my orthostatic status. My heart rate continues to beat at an excessively high rate even at rest but increases upon standing. I’m wearing a heart rate monitor 24 hours a day now. This is fun because if I get up to go to the bathroom my heart rate will jump to 165+. The doctors don’t come in until it’s over 170 but even they don’t know what to do. x-ray is normal, EKGs are normal, they have tried putting back in all the fluids that were removed. Today they tried a double dose of a blood and platelet transfusion. My heart rate still goes up and my blood pressure bottoms out. Today they decided to test for infection. They took two blood cultures, one from my central line and one from my arm. I haven’t had a fever but they want to try to rule out any possible cause of these symptoms.  The worst thing for me is that now any bit of autonomy or independence that I had is gone. I need to ask for assistance to get up to go to the bathroom and brush my teeth. If I take too long the nurses rush in telling me to sit down. I have become completely passive about my care. I’m here in the room and they are here to help me but I have no control over what is happening to me. I take my pills and I let them test me and inject me. I am disconnected from real life.

I am taking back what little control I have over one area. I am having my hair cut tomorrow before it starts falling out. I’m so thankful to the generosity of friends and family who have contributed to my wig fund. I have enough money to send my hair out to be made into a hair piece to be worn under hats. I’m going to need to acquire a full wig at some point and expand on my pitiful hat and scarf collection but this is a wonderful gift. Jon will cut my hair as directed (And he will NOT cry) and I won’t cry either and we will mail it in a ziploc bag to Florida where it will be hand sewn into a perfect hair piece just for me. Since I want to salvage as much of the length as possible we will be cutting it straight to the scalp. I’m not doing the thing where I pretend to like a short pixie cut. We are going GI Jane straight away. Jon and Jeff will be buzzing their heads also. Who else is in? Orange leukemia ribbons for anyone who participates.

This weekend I was looking forward to seeing the kids but this room is no place for children. I’m not sure how all of us can go through this and not come out deeply affected. I fear that even if I survive this my family may have nothing left. I have some pictures that include fun things to do around the hospital and there were moments and snippets of glee but the rest was strained and tiring. The kids need both of their parents but I have to stay here. Xander says he just wants everything to go back to normal. Amira is thrilled to have so many new friends to play with and things to do. Overall, I think they are hanging in okay.

Foot race outside in the courtyard.

 

 

 

 

 

 

 

 

 

 

Sunday they took me for a walk outside by the fountains. I had some medical issues come up and needed some tests that pushed our walk back enough that they missed their movie.

 

 

 

 

 

 

 

 

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Posted on June 25, 2012, in Uncategorized. Bookmark the permalink. 4 Comments.

  1. Thank you for finding the energy to keep us updated. My head is too ugly (we’re pretty sure my mom dropped me and my older brothers rolled me, but anyway it has bumps that would make a phrenologist giddy) so I’ll pass on the shaved head this time. But I did get my swab kit from bethematch.com. Here’s hoping they figure out what’s up with your BP.

  2. Oh Lauren, I’m so sorry. I saw this after I wrote that message to you. This just sucks. It’s bad enough being stuck in the hospital, but then not even being able to get up on your own? I think that would make anyone crazy. And I can’t believe that they can’t figure out what’s causing the rapid heart rate. Could it be stress/anxiety? Or maybe the meds they have you on? Don’t sleeping pills affect your heart rate?

    As for the kids, I bet it is tough trying to keep them happy and semi-quiet while they’re in that small room. Do they have any type of playroom where you can all go spend time together? I agree about everyone being deeply affected. That’s just part of it, I think. This will be a rough time simply because it’s such a huge change, but (and I’m sure you know) kids are very resilient. From everything you say, it sounds like they’re getting treated very well by some great caretakers.

    I hope the tests come back normal and they get this shit figured out.

  3. Jeannie brigger

    I said to someone today that if I ever face something akin to what you’re facing, I only hope I would show some of the grace that you are.

  4. I never post on your blog, though I probably should more to give the other side of the family perspective. But, the family is strong and tough. There are moments, but the family is totally capable of getting through this. It will be a difficult road, but I am sure we can come out on the other side with some semblance of normalcy.

    Everyone deals with the stress in a different way and sometimes tensions will rise as we go through this. But I am sure the kids and I will be there for you as you fight a battle that most of us cannot imagine. You only get to see the kids in the hospital, but they are doing well. Xander has been a trooper and Amira, while difficult at times, is holding her own as well.

    You keep strong with what you can control and the family will be here for you as we go through this. We love you. Focus on you for the moment.

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