Fatigue - Or a Little "Whine" with that?

I know, it is past time for an update.  My sister has been asking me for one so she can post it to the GoFundMe campaign she started to help me.  So, I am going to update my blog and send her a copy of this.  It isn’t that I don’t appreciate all the help and want to let people know what is happening, sometimes it is just hard to share some of the things that go through my mind as things progress.

You see, if I am being truthful, not only am I updating folks on the progress with the chemo, but the other issues, like emotional, and the such.  Sometimes it is really hard to put things into words.  Oh, there are times that I am very eloquent and can express what I am thinking but unfortunately many of those times are when I do not have access to put them down.  Well, at least they sound good in my head.

Right now, I am tired.  Physically and emotionally. Frustrated.  Oh, so frustrated.  I am tired of fighting the system.  I applied for SSI, was turned down because I had a total of $2000.00 sitting in the bank.  I applied for disability.  Got turned down because I am working.  I asked how am I supposed to pay for my insurance if I don’t work? Rent?  Food? Utilities? What I make doesn’t cover.  I am a penny pincher to the max, so I am not living above my means.

To be honest I want to work.  I want a job.  I want benefits.  But I am getting so tired of the hunt.  I won’t give up.  I’m still looking and will continue to do so.

Emotionally, I am tired of fighting. I am tired of fighting the system.  I am tired of fighting cancer.  I just want a normal life, go to work, save a little bit, travel once in a while, and retire.  I don’t want to keep working till I die, and I am so tired of cancer.  I am tired of living with it, I am tired of having so many doctors, I am tired of the chemo killing me.  Did you know that the drug they use in conjunction with the Lartruvo is damaging my heart?  That is on top of what was done in 2003.  I’ll be going in for an echo cardiogram with a Doppler to check my heart.

Even with that, there is no guarantee that the cancer will be gone until the next time.  What happens if it isn’t gone?  A different type of chemo.  If that doesn’t work?  A different type of chemo.  Who knows clinical trials. Remember it is inoperable.  Has something to do with the location, you know, the heart thing.  Even if it is gone, how long until the next time?  I had it removed from my lung April 2016, it was back in November.  Yes, it wasn’t officially diagnosed until January.  But you get the idea, six months.  The time frame between was only six months.

So far, the chemo is going well, I suppose.  I say it that way because I haven’t landed in the hospital with a crashed immune system.  Most of the side effects have been fatigue, headache, nausea, loss of appetite, I am losing the sense of taste, which really sucks.  The hair is slowly falling out, but the regrowth of the leg hair is so minimal it is nice not to have to shave for a change. 

I’ve lost weight.  I check my weight every couple of days, and weigh myself in the morning about the same time.  I am down to 107 pounds.  I do try to eat.  But it just isn’t sticking.  That and the cold I picked up somewhere isn’t helping.  I am being very cautious of that, don’t need pneumonia.  Maybe that is why I have been craving soups.  Hot soup.  Well, that and liver and onions.  Hot soup with the steam helps, and it warms me up.  The liver, probably because the iron is low.

The fatigue is the worst.  Well, after the loss of the sense of taste.  Last Friday, I woke up feeling great, full of energy, and felt good.  Which was surprising since I had chemo the day before.  Felt that way most of the day, even went out to dinner with Jim, and Nate.  Saw Logan.  Good movie, it ended two story lines, in a good way.

Unfortunately, most mornings I do not wake up like that.  I am tired and cold.  I am always cold. I get going and get to work, feeling ok.  Even think about going to the grocery store.  But usually by the time I leave work, I don’t feel like trying to shop.  I just want to go home, make some hot tea and put on warm fuzzy clothes.

I am down to one job now.  I was working seven days a week.  The last blood test showed my immune system starting to lower itself, so after some discussion, I told the winery that I wouldn’t be working there for a while.  It is the one place I was exposed to lots of people, kids (they have a play room there and a fantastic bistro).  Being a hospitality service, people show up to work sick since the only way to make money is through tips.  My other job, I see three people in the day.  So, not as much exposure.  Sad thing is between the two jobs together, I don’t meet the roof over the head, insurance and utilities.  I need to find a new job.

On the up side, I got to cross something off my bucket list.  Seeing New Orleans during Carnival.  I wasn’t there for Mardi Gras, but the party leading up to it can be just as fun.

I had enough miles built up on a credit card for an economy round trip to NOLA.  The ride down was lousy, kid sitting on her parent’s lap, kicking the back of my seat.  Spent a week with my son, going to parades and eating.  At least I had a sense of taste then.  It was fun, and I really enjoyed the Chewbacchus Parade.  Basically, it was a Com a Con parade. 

Ok, I am done whining and I am going back to work.