What does Terminal Look Like?

I am in a very interesting position.  I have cancer and I am terminal.  Yes, it is.  It is amazing to my how many people have preconceived ideas on what a terminal cancer patient should look like. Or for that matter what a cancer patient looks like.

There are many of us that do not fit those preconceived ideas, we almost look normal.  Whatever normal is. I don’t fit into any of those preconceived ideas.

What do I mean preconceived?  Well here are a few thing I have people tell me.

People who have cancer and are getting chemotherapy are bald. 

No.  Absolutely not.  Chemotherapy drug are harsh.  They kill cells.  Both healthy and cancerous.  But not all people go bald.  In fact, there are some therapies put into use right now that actually help the patient keep their hair.  It is cold therapy.  Not everyone is able to use it, and it may not work for as well for every patient.  But for those who losing their hair would be horrifying, it gives them options.  Some people only have their hair thin out.  One year my eyelashes fell out along with all my hair.  That was hard to deal with.  I like my eyes.  My eyelashes are my vanity.

That was my experience with the antibody chemo therapy - thinning hair.  I hated it.  I’d rather be bald.  I kept my hair buzzed. To me it is better to be bald rather than have balding spots or thinning hair. 

All cancer patients are always sick and vomiting or at least nauseated.

When I went through cancer in 2003 I would have said this is the truth.  But over the years they have made huge leaps in anti-nausea drugs. 

Don’t get me wrong.  We still, well not everyone, but I still get nauseated.  But the anti-nausea drugs work wonders.  There are even what they call “break through” anti-nausea drugs.  Basically, they are a medication you take when your normal medication does not stop the nausea, and you feel like vomiting up dinner from last year.

Cancer patients don’t eat. 

Well, the further on in your chemo, some may not want to eat.  Some don’t eat early on because of sores that can developed in the mouth and throat.   Believe me when we feel like eating, we eat.  Mainly because we know there are those days we don’t feel like it, or will feel like crap.

I have days when every couple of hours I am eating something.   Doesn’t matter to me healthy food or not.  Calories.  That is all I am trying to get into my system. I know there will be days I don’t want to eat, or eat very little.  So, when I can I do.  My body will store it and when I need it I will have it.  Unfortunately, there never is enough stored.  

In fact, once this is published, I am going to have pumpkin pie.

All cancer patients are extremely thin. 

Um.  No.  Depending on the treatment, and the amount of steroids given.  Yes.  Steroids are routinely given to cancer patients.  Helps with some of the side effects.  Unfortunately, because of the different body types and reactions, some people swell up.  For those patients it is heart breaking.  I have no idea why it happens.  It just does.  

Not all patients are deathly thin either.  Some may get to that point later in treatment.  But not all.  Everything depends on the drugs used (if they treat with drugs) and again the body’s reaction.

All cancer patients are tired all the time. 

Well, there is some truth in that.  But not 100% of the time.  Depending on the chemotherapy, and cycle, a patient can feel exhausted one week, tired the next, and almost normal the following.

One of my treatments a few years ago was the MAIDS treatment.  Chemo for a week, then two weeks off during which I received radiation therapy.  First week I felt like crap, second better.  When the time for chemo came around again, I felt pretty normal.  Later maybe cycle 4 or 5 I would be tired.  Exhausted all the time by cycle 6.

Terminal patients look like the dead walking. 

Well, maybe nearing the end, and some prior to but not all.  Just because I don't look half dead doesn't mean a thing.

Cancer patients are sick all the time or should always wear masks and stay away from everyone.

Not all the time.  We are more susceptible to getting sick if the chemotherapy kills off our white cells, or interferes with the production of the red blood cells,

Usually when that happens, we end up in the hospital, but not all the time.  A couple of times my blood counts were way down, but I felt fine, even felt almost "normal". 

When the blood counts are normal for the most part we are normal.

Cancer patients are always depressed.

No.  Not all the time.  Yes, there are times we get depressed.  It is only normal.  It gets tiring having blood taken, running to the doctor, treatments, hospital visits, MRIs, CT Scans and the such.  

I prefer to laugh and go out and enjoy life, but yes, even I get depressed once in awhile.

I am terminal.  For six months I received anti-body chemo therapy. Every other week. My hair got thinned out, so I buzz cut it.  I’d feel good the day after. But then for about three days I’d be tired.  The further along in the cycles, the longer the tiredness lasted.  Lack of appetite usually comes from the way chemo affected the taste buds.  Everything ends up feeling yuk, and tasteless.

We have changed my chemo to Yolendes.  Sea sponge derivative.  I have had one cycle.  I get chemo for 24 hours.  I go home with a working pump, go back the next day and have it removed.  The day after I feel good.  Again, those steroids.  The third day I start feeling, sick.  Like a cold or flu.  Then it gets worse for about three or four days.  Gets better after that.  Exhaustion so bad that getting out of bed is a feat in itself.  Eating?  No thank you.  Drinking?  Sipping water every so often but not enough.

Chemo affects the production of white blood cells.  When I was on the Anti-body I got Neulasta.    I prefer the Neaulasta and its issues to the shots.  Nupegen shots burn like hell.

They skipped my second round of chemo with the sea sponge.  Because the chemo made my white cells crash.  If you do not have a good blood count, they don’t do chemo.  They would be endangering your life if they did.  I assume it is the same way with all chemo.

I spent a few days in the hospital because of pneumonia, and it was after chemo.  The doctors at the ER were spazzing out  because my counts kept dropping.  I kept telling them it was the chemo treatment.  They finally decided that a blood transfusion would be a good idea.  They actually do help.  Bumps up the red count.  

I get told you can’t be terminal.  You look good.  Your skin is in good shape.  You don’t look sick.  I have had three weeks to recover from that treatment, so I look better.  The further into treatment I get the longer the side effects will last, and I will end up fitting that image people have of terminal. Well, maybe.

But I plan on doing things my way.  Treatment is to slow the cancer, or keep it in place.  It won’t cure it.  I am going for the quality of life.  If the chemo lets the cancer spread.  We are onto the next one.  If the time spent recovering becomes longer, or my system starts crashing and I end up in the hospital more, the treatment changes. Or I just stop chemo totally.  Boy, then I will end up fitting that image.

Please, just because a cancer patient doesn’t look like a dead man walking, don’t assume they are lying, or exaggerating.  Just because we laugh, and joke and look strong, don’t assume.  Cancer patients are great actors and actresses.  I know.