Thursday, May 15, 2014

How I am Feeling....

I really prefer to write about other things going on versus how I am feeling. Thinking too long on how I feel these days is too depressing .

The short answer to how I feel is a I feel lousy, and it is only going to get worse. Chemo is coming. The drug I am getting every Monday is leaving me feeling like I have a bad case of the flu (chills, headache, achy, tired, nauseous, etc.). This week I learned each week would be getting progressively worse. This is apparently a "common" side effect of rituxan.

On top of that I am also having the rare side effects of suppressed counts. I was back at the doctor all morning yesterday for some tests, fluids and meds. The tests were to see if rituxan had induced an autoimmune disease causing the premature breakdown of red blood cells or if the drug was doing it on its own. It has come back that is is the drug causing the breakdown. So what they do for that is treat the symptom which means blood transfusions will be starting up for me Friday or Monday. My hemoglobin was down again yesterday from Monday to right at the transfusion level yesterday. They debated giving me a transfusion but decided to wait in case they needed more tests on my blood.

With rituxan breaking down my red blood cells it is causing my hemoglobin (which carries oxygen through your body) to drop significantly. This makes me even more weak and tired. Transfusions should help some but last time around I was getting transfused every 2-3 days and it takes several hours so it helps but is also a bit of a tiring process.

I also got the word yesterday I needed to stop work for awhile. I am feeling awful and is looking like just Mondays at the doctor are turning into 2-3 day a week visits for tests, fluids, other IV meds and as soon for transfusions.

On the NIH front, things are still rambling along. My doctor's office FedEx'ed NIH slides of my bone marrow biopsy yesterday that they requested and now the hope is to have their final reco back by last week in May when I finish the last course of this round of rituxan. We are mentally planning that what will be next will be a stay at UC for chemo but we'll see.

The girls continue to be very resilient to my lack of energy and not feeling good. They are taking on more chores to help (e.g., more help with dinner prep, clean up). So they are actually excited because they are getting a boost in allowance to go with it. Right now they get $1/week for the basic chores they do now (e.g., making their beds, putting away close, feeding dog). Katherine told me the other day "you are making me rich!" when I gave her allowance for the week. They are thrilled that it will be doubling. (Please do not let your children let them know what they get because we know we are way below market rates!!). So the girls are enjoying all the end of school year activities and they are very excited that their allowance is getting a boost..... so always an upside to everything.

2 comments:

  1. Beth - I know this is hard for you, especially being the busy person you are. Do what you can, when you can and the rest can wait! I know you will be able to get through this. Stay positive and know there are a ton of prayers and positive energy coming your way daily! You are one of the strongest people I know. If you, Chad or the girls need ANYTHING, please let me know.

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  2. You are in my thoughts and prayers daily, Beth! You have a career as a writer, if you ever leave P&G. I continue to be amazed at your ability to articulate so clearly the details of your treatment (you could also be a physician), how you are feeling and then so eloquently transition into what's happening with the girls. Amazing lady, you are!

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