Neutropenic with an Attitude

I knew I was not feeling quite right at the beginning of the week. However, generally I need 10 days to spring back from a chemo treatment. So, I did not give the fact that I really was not feeling well much heed. I tried to slow down and nap on Monday, but by midnight, I had spiked a fever high enough to condemn me to taking my temperature every hour and prepare for an ER visit. Oddly enough, my fever bounced from 99.1-100.2 all night long. A 100.5-degree fever mandates a trip to the emergency room.

Since I never got to this point, I called Dr. Sweet's office the next morning, guessing I was slightly neutropenic. The tests my doctor ordered confirmed it. I found a great definition online that I thought I would share with you all. It is from cancercare.com, hosted by Scott Hamilton:

If a patient has a fever and low neutrophil count (less than 500/mm3) (febrile neutropenia) they are at risk for infection they may be hospitalized, monitored and receive antibiotics. The concern is that an infection can develop in the blood and lead to a life-threatening condition - sepsis. So the patient is admitted to receive antibiotics until the fever resolves, and neutrophils increase to safe levels - if no source of infection is found.

I have had a slight brush with this problem before and was aware of its dangers. However, the last time, they told me to stay home and where a mask and the symptoms where gone within 24 hours. This time around, I knew I was at the most dangerous point of the 21-day chemo cycle. Days seven through 14 I am most prone to infection. i.e., my white count is the lowest. Monday would have been day seven and hence, another reason for my phone call to Dr. Sweet.

When Dr. Sweet called to confirm my test results, I was not surprised by the results but more by the surprise in his voice. He gave me a new prescription to Neupogin (this is something I take for seven consecutive days post chemo) and strict orders to go to the ER if my fever reaches 100.4. Thankfully, it never did.

However, I can tell you that by the time I got home from the lab (thanks for taking me, Laurie!) and got Dr. Sweet's phone call, I was feeling really weak. I knew I had a bit of a cough/cold caught from one of my children, but more than anything I just felt extremely weak. A strange weak. Thank goodness for my mom, who came over to manage homework and Maddie's biography project, while Steve took Harrison to his first baseball game of the season. I was in bed.

I also stayed in bed yesterday. A new experience for me. I think I slept on and off until 1:00, getting up only for lunch, which my mom had prepared for me, Tom and my dad, who were all here working on our house.

The experience of the last couple of days has taught me to appreciate these down times. I do not know that I have ever spent days in my bed. I never felt justified in doing so. Now, I have an excuse - a good excuse - an excuse that will help ensure I live a long happy life. So, here I sit. My lap top even plugs in down here now (usually it charges in the family room).

The good news is that I have no fever yesterday! As far as I can tell, I have had not had a fever since about 3:00 a.m. on Wednesday, when it was 99.1.

I have a few more physical symptoms that I am dealing with, though. Nothing serious, just some odd ball skin stuff, a little bit more pain (I am working my way off the Vicodin now that I have no fever and can take Tylenol) and the ever constant taste bud issue. I just look forward to having a little bit more activity next week, a few more taste buds and to kick this silly cold.

I got this - or at least I am working on getting this. Going from working, to not even driving, to now having to stay in bed has been something. But I am just trying to keep my eye on the prize and learn to appreciate the choices I get to make in my daily activity now. Different from what they would have been six weeks ago, at least I still have them. Besides, who can resist a nap in the afternoon?

Expectations

I ache. I think I may have finally caught something resembling Harrison's cold. Only mine went straight to my chest; it is not really in my sinuses at the moment. The kids are off to school though - BOTH of them! I scaled back my plans for today, have taken my vicodin and have my trusty thermometer by my bed. My parents are coming over to help around the house and maybe with an errand or two. I am looking forward to it. I think spending time alone with my mom and dad will be good for me.

I know why I feel run down. I had a weekend where I rarely sat still. Friday night, I was at my friend's house. Steve was exhausted, Harrison sick and so a couple of my friends came over to get me. Another one of my friends stayed sober to bring me home. I have good friends. I need to get out more - to remind me that life is good.

I have been depressed lately. No one has been able to make me happy. I have not been able to tell any one how to make me happy. Psychologically, I am still reeling from the after affects of my seizure. There is no way to explain how it feels to have a grand Mal seizure in front of more than 100 people. To be referred to in discussions, as "his wife is the one who had the seizure." I do remember a seizure that I had at the flower stand that I worked at while in high school. I was 17. Mind you, I put on a brave face then as I do now. The after affects of having the seizure and now not being able to drive send me to that depressed place I knew as that 17 year old. As my cousin rightly pointed out, Steve does not know me here and I need to let him in a little more, so he can help me. I am working on that.

Steve is a remarkable man. However, it was during a tearful discussion that we had on Saturday morning that I made my decision: the only person who can help me get out of this depressed place is me. I know it involves Steve, but also know that Steve has the weight of the world on his shoulders - our world. And he constantly puts pressure on himself to get it all done. I think it is this pressure that stagnates his focus and makes him miserable. The last thing I want to do is contribute to making him miserable.

He is doing a great job. The way he deals and discusses my cancer with me brings me great comfort. However, for the betterment of our home life, I need to take more responsibility for making myself happy. For example, for a while now, I have craved some grand romantic gesture, generated by Steve, without my knowledge or input. What I am realizing is that Steve finishing our house projects which have enabled so much positive change in our living space, is a romantic gesture. I am more thrilled by the day with the new look/function of our home and this new viewpoint is a more realistic expectation, I think.

Also, I do a lot of sitting on my couch. I tell myself that I do not have the strength to do much more. Maybe this is true; maybe this is not necessarily the case all of the time. I am not saying I can go for a six mile walk, but maybe sitting in the sunshine reading a book would change my state of mind. I guess what I am saying is that I think I could be happier, if I was more productive.

So my reason for not feeling good right now? Probably because I worked for four hours on the house on Saturday as a family. We also went to OB yesterday for breakfast and to check out the surf, post Chilean earthquake. We walked around for nearly three hours. It felt great. It felt normal. Of course, had I come home and rested, I may have felt a little better this morning. However, feeling as "normal" as I did, there were a hundred other little tasks thought I should do. (I also had an MRI of my brain yesterday. No results yet but hopefully soon.)

All in all, I am physically exhausted today, but mentally, I think I am happier. I know a lot has to get done on the house this week and some of it needs my input; we have sports every night; and, there will be rather large homework demands due to Maddie's biography report being due and as Harrison continues to make-up school work missed last week. I am thinking I can handle it; not in the same fashion that I may have six months ago - I will be slow; I will need naps. Maybe that is OK. As long as I am being honest with myself about how productive I can be at any given time, I think I can meet my own expectations. Then, we will all be happier.

Click here to link to the video we shot a the beach yesterday. Gorgeous day, happy memory!