Thursday, July 2, 2015

What you might not know about chemo

Our family is yet again battling cancer.  The last time we went through this, I was too overwhelmed with the day-to-day survival of my patient to really absorb what was happening around me.  This time we have loads of support, and I'm a bit more aware of our interactions with other people.  I am surprised by the things that people just don't know about chemo, cancer, the patients, and the caregivers; so I decided to share what we've experienced.  Maybe it will help someone else.

Chemo.  Everyone experiences chemo differently.
  • Receiving chemo:
    • Each kind of cancer requires a different list of chemo ingredients, and every person has to have that list tailored to him/her.  There is no one size fits all.  If a doctor tells you there is, go get another opinion!
    • In fact, before injecting your body with poison, go get a second opinion.  We did not do that in MS, and we almost lost a member of the family.  This time an entire team of oncologists reviewed our case. 
    •  Depending on the particular requirements, chemo treatment can last for months.  Our first time through, chemo lasted for four months.  This time, it will be 2.5 months.  
    • Each chemo session is also different for us.  Sometimes we are there for two hours, sometimes four.  It depends on the cocktail of the week.
    • Ports are often used to give chemo.  They are essentially tubes in the chest that dump directly into a vein.  The needles are hooked slightly at the end so insertion can be quite painful.  Patients have to numb the port with Lidocaine at home and allow it to penetrate for at least 45 minutes.  There is also a technique to inserting the needle.  A bad nurse will make you cry.  Why ports?  Chemo can cause veins in the arms to collapse.  Ports are supposed to provide easy access, but some people refuse them because insertion requires surgery and it is possible for them to become infected. 
    • Although the staff is very kind, the whole chemo process can be draining.  Once the port is accessed, blood is drawn to see if the blood counts (RBC, WBC, and platelets) and kidney function are high enough to receive the chemo.  That takes about an hour at our facility.  If the counts are good, chemo proceeds.  If the counts aren't good, you have to see about injections, transfusions, and/or fluids. It's a very long day for everyone.
    • For us, benadryll and steriods are part of the mix on chemo day.  The former makes most people sleepy while the latter makes them hyper.  Some patients will fall asleep during chemo, and some will talk about nothing. Just depends.
  •  Weight and food:
    • Some people actually gain weight on chemo.  That has not been our experience, but it does happen.
    • Don't tell a person on chemo to eat.  It's not particularly helpful.  Ask what he/she is craving.  Go buy it or make it, but don't be angry if they only eat a few bites.  Chemo can cause the throat to burn when a person eats.  Not conducive for weight maintenance.  
    • Another problem is mouth sores.  Sometimes chemo causes terrible mouth sores.  There is a mouthwash solution that a doctor can prescribe.  It helped us immensely during the first chemo.
    • If a patient looses too much weight (our doc said 10 lbs), the doctor can prescribe an appetite enhancer.  It has worked very well for us.
    • If a patient's white blood cells drop too low, he/she may be told by the doctor not to eat fresh fruits and veggies.  You should always ask a patient before bringing over fresh foods. (This applies to fresh plants and flowers also.)
  • Hair, skin, and nails:
    • Not everyone looses his/her hair.  
    • Those who do loose their hair may not want to hear a wig or a hat.  Some folks stay natural.  Support whatever the patient wants.
    • Some patients want to shave their heads when their hair starts falling out.  It can be depressing and/or annoying to see fistfuls of hair on your pillow in the morning.  Some salons will do this for free.  Personally, I wanted to do this myself.  I felt it was a symbol of support.
    • Some people experience rashes, blisters, or other skin problems.  They may need to try a new detergent, lotion, or soap.
    • Some people have changes in their nails.  We noticed stronger, faster growing nails on the first chemo, but that has not been the case this time.  You just never know.
  • Neurological and muscular side effects:
    • Not only can chemo burn the throat and cause mouth sores, it can cause numbness or tingling in the extremities.  This can be painful or just frustrating.  Some nights it can feel like snakes running up and down your body or like ants stinging you.  There is a medication for this also.
    • Chemo brain is real.  It's not a cruel thing I say to get a laugh.  While waiting in the infusion center for chemo, we've seen patients wandering around, completely lost and confused.  Patients forget their birthdays, their kids' names, and even where they are.  Please, please be kind to anyone on chemo.  They are not playing dumb.  The chemicals are messing with their minds.
    • Depression, anger, frustration, and anxiety all accompany chemo and cancer.  If you love someone with chemo, remember to be sensitive.  Sometimes my patient gets annoyed with me, especially when the steroids are going strong.  That's okay.  I make a joke and move on.  It's not personal. 
    • Sometimes patients have problems balancing or walking.  They can appear drunk, but it's just the chemo. Recently, we've begun using the wheelchairs in the hospital.
    • Fine motor skills can be affected.  It can be difficult to do anything with the fingers like sewing or writing.
    • Fatigue is real.  Two days after chemo, my patient crashes hard.  Walking from the living room to the kitchen is an event.  That's normal. Let your loved one do what he/she can.
  • Digestive issues:
    • Constipation or diarrhea are other side effects of chemo.  You never know which one you're going to get.  There are meds for both.
    • Incontinence is another side effect of some chemos.  It's very a good idea to have some Depends around and a change of clothes.
    • Vomiting is another side effect that people assume you will have.  We haven't experienced that at all this time, but some people do.  Again, there's a medication for this.
    • We have had to deal with nose bleeds.  This can be particularly disturbing when a person's platelet counts are low. 
  • Other thoughts/issues:
    • Chemo is a poison, and it will effect the organs of the body.  A patient may experience heart issues (like we did) or kidney problems (like we did).  It's also possible to loose bone density.  Good doctors will keep an eye on this throughout the chemo process.
    • Chemo drastically weakens the entire immune system.  Patients should try to avoid crowds, children, and any sick person.  I have been amazed (and annoyed) with the number of people who bring kids around.  I know you love your kids and want our family to love them too, but you cannot bring them to our house!  Your angel is a germ factory that can literally kill my patient if he/she has low WBCs.  I am also shocked to hear people say, "I just have a cold.  It's nothing serious." Are you for real?  Don't come over here!  Your not-so-serious-cold can kill a chemo patient.  We have been hospitalized twice (once in MS and once in MI) because of infections.  Please think before you visit a chemo patient.  It's really no joke.
    • The first time around on chemo it was challenging to find a good temperature. During a Mississippi July, we had heaters and electric blankets on.  Blood circulation can get very bad and make the patient cold.  It can also cause them to look very pale, almost translucent.
    • Steroids are often given with chemo, as mentioned above.  This can cause a patient to seem hyper, energetic, emotional, or just plain coo-coo.  Families and friends have to learn the cycle of ups and downs and work around it.
I'm sure I forgot some things, but these are the big ones that we and other patients we know have experienced.  Maybe this is helpful to someone.  I wish I had known these things.

Chemo can be so difficult for everyone.  Of course, the patient experiences all of these problems firsthand, but everyone who loves the patient is also affected.  Cancer does not just affect the person who has it.  When someone you love has cancer, you have it too.  

Stay strong, caregiver and patient. 

Sunday, June 28, 2015

Treasure

Treasure

When I saw you cry today,
my heart broke.
You are not a throwaway.
You are a treasure.

When I'm in trouble
or afraid,
you are my hideaway.
You keep me safe.
You make me strong.

When I saw you cry today,
I wanted -
I wanted -
I cried with you.
You are not an inconvenience.
You are a treasure.

When I remember
the best days,
you are there.
You laughed with me.
You celebrated.

When I saw you cry today,
I felt angry.
You are my past and my future.
You are my heart.
You are a treasure.

When I think of you,
I am proud.
You encouraged me to think.
You helped me to love.

When I saw you cry today,
I wanted to
wrap you in my arms and
make you feel me love.

You are not an inconvenience.
You are a treasure.

Saturday, May 9, 2015

Hello from the great silence

I wasn't sure I'd ever have the time or energy to blog again.  No promises on how often this will occur, either.  In an effort to play catch up, here's what's been happening in 2015.

In January school started and that means I'm crazy-busy.  Unforeseen issues forced me to rework my schedule so that I could assist one of the teachers.  I had planned to observe her, but getting reassigned to assist her officially was better than taking a year of classes.  

In February midterms hit, and I was working frantically on my final Master's paper. During winter break, Mike had the opportunity to travel to England for work, so I joined him and finished my paper in Cambridge.

March brought good news.  Mike got a promotion at work, and my final paper was approved.  Still, the end was not yet in sight.  

In glorious April school ended.  The final push is always tough with final term papers, student registration, and students clamoring for tutoring before final exams.  But, on April 22 it was over.

On May 1, I graduated.  I was offered a job at my university, and I, of course, accepted.  Summer classes start on Monday (May 11), and I'm very excited.  I'll be teaching writing to beginning ESL students.  I know many of my students from the classes I assisted, and I think that will help me to make a smoother transition.

I can't promise that I'll blog a lot.  If you follow me on FB, you know more about my personal life and things that take up my time.  However, I am hopeful that graduating means I have my life back.  I have LOVED cleaning my house, organizing my papers, and rearranging my office.  To have free time is just the most amazing thing.  Maybe I will spend some of it blogging again.

Sunday, February 1, 2015

Can't imagine being busier



Katrina's recent comment was a good reminder that I really should post something.  Especially once every two months.

I need to take pictures of the projects Mike's completed, or I should turn over that responsibility to him.  Of course, he hates it, and it keeps him from making more progress.  He finished the hall, and he made a jewelry rack for me.  He fixed the snow blower again and cleaned out the garage.  He's been helping with all sorts of things that I've typically done in the past.
 

We have been believably busy.  We traveled to Oklahoma over the winter break to collect data for my thesis (which was downgraded to a seminar paper - don't ask).  I spent the first two weeks of January processing it in my free time.  Of course, school started up in January and the requirements for my assistantship changed.  It took some time to adjust and get everything in place.  And there are the ongoing responsibilities of tutoring, organizing events and workshops, and trouble-shooting.

In the meantime, other things came up, which require a good bit of time and juggling.

My plan is to spend the entire winter break banging out the rest of my final paper.  My adviser wants the rough draft by the end of March, but I'd like for her to have it by mid-March.  Every weekend I'm shooting for 10 pages written.  So, after all that writing, I probably won't feel like blogging. I am going to try to coax Mike into posting periodically so the silences aren't so long.

Tuesday, November 25, 2014

Neglected

I have neglected the blog for so long that it's difficult to start back up.  We have been caught in the mundane cycle of work, school, and too-short weekends. 

Mike has made great progress in the hall.  It is frustrating that it's taken a year to do such a small space, but I haven't been available to help so I can't be too upset.  Mike's still running.  He finished his second half-marathon a few weeks ago, but he tweaked his leg so he's resting it now.  He's lost around 15-20 pounds this year because of the running, and he looks thinner and younger.  In fact, one of my friends at school says I "robbed the cradle."  I tell her that I need to start running because he's two years older than I am!

As for me, I'm just trying to finish the semester.  There are only two weeks left, but they are, of course, the ones filled with homework assignments, presentations, and massive papers.  My major ESL responsibilities are over except the tutoring, which is also slowing down since school is almost done.  I have been struggling all semester to get everything in order to start my thesis.  Since I'm interviewing people and recording it, I had to complete the process to get my IRB.  It's a time-consuming process for such a simple task, but they have to make sure that I won't hurt anyone.  If all goes well, I'll start interviewing in December.

It's not a particularly exciting picture of our life, is it?  Well, it can't all be fun.  Just makes vacations that much better.  On a more exciting note, on Friday we will be hosting our 2nd Annual International Thanksgiving.  I'll try to post pictures.

Happy Thanksgiving Week!