Wednesday, November 27, 2013

The HARD Part Begins

I don't even know where to start this morning.  Yesterday was a whirlwind of emotion.  It was a good thing Jerry was already IN the hospital, or I might have put him BACK THERE!

I am a very organized, in-control, personality.  I can handle most anything EXCEPT people who aren't in their right mind.  It is something I cannot "fix", and it gets me very upset.  On his BEST day -- in his BEST mood, Jerry isn't a great communicator.  He gets facts all mixed up and forgets half of every story.  If I really want to know details, I have to draaaaaaaaaaaaaaag them out of him.

I think most men are that way.

So I got up yesterday morning, had a few cups of coffee and some toast, and I called Jerry at the hospital.

This is how the conversation went:

Hi honey, how was your night?


How are you feeling?

I hurt, Joy!  How do you THINK I'm feeling???

I'm sorry.

They took me to have an Ultrasound on my legs this morning because my feet were swollen, and they thought I might have a blood clot.

Really?  Are you okay?

While I was down there for the Ultrasound, I ran into Dr. Ellis (the surgeon).  He told me I was doing fine, and I could go home today.  He told me that I need to return in two weeks to have the staples out and to have a port put in my shoulder for the chemotherapy.

Great!  HOW does he know you will need chemotherapy?

They have a definite diagnosis now of B-Cell Lymphoma.

WHAT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  The doctor told you -- for sure -- what you have, and you didn't think to CALL ME!!!!!!!!!!?

I WAS going to call you.  I just haven't yet.

JERRY!  Don't you think it is just a TAD important to CALL YOUR WIFE when you finally get the diagnosis!!!!!!!!!!!!!!!!?

On my WAY BACK to my room, we passed Dr. Keefer (the cancer doctor), and he told me I could go home too.  He also told me that I have B-Cell Lymphoma.  He said I will have to have SIX treatments of chemo -- each 21 days apart -- and then maybe 2 more -- 21 days apart.

That doesn't sound so bad.  Maybe you won't have to have more than six.

THEN -- he said this (try to follow -- it is like "Who's on first?":

When we arrived back at my room, THAT is when I found out I was going home today.

WHO told you that?

The doctors!

The doctors were IN YOUR ROOM?

NO, JOY!  I TOLD you Dr. Ellis was downstairs, and we passed Dr. Keefer on the way back.

Right.  I know that.  Who was IN YOUR ROOM when you got there?

NOBODY was in my room!!!

BUT, you said, "when we got to the room I found out I was going home today".  HOW did you find that out in your room????????????

I already KNEW it from when Dr. Keefer was in the hall.

AND on and on that conversation went until I finally just gave up!  Then the day continued to be just as nutty.  That conversation happened about 8:30 or 9.  I told Jerry I would get ready -- run some errands -- have lunch -- and then pick him up at the hospital.

I arrived at the hospital at 12:45.  Jerry's room was a mess.  There were no towels or wash cloths in the bathroom.  The bed looked like alligators had wrestled in it.  It appeared to be a messy, vacant room except for Jerry's bags -- all packed -- and Jerry.  Jerry was sitting in a chair, and he looked awful.  His hair was a mess and the skin on his face was very red and scaly -- as though he had gotten a bad sunburn.  His back looks like that too.  All I can figure is he is allergic to the hospital bath soap.

I went out to the nurse's station and informed them I was there to remove my husband from the premises as his doctors had released him that morning.  One of the girls decided to take me on as her project, and she began shuffling through papers.  She told me that the doctors MAY have released him by word of mouth, but NEITHER doctor had signed a discharge order.

LOVELY!  So much for my "perfect hospital".  I went into full "Joy mode" and had the nurses calling the doctors -- I called the doctors -- and I asked if I could get the name of the hospital administrator or the Governor or SOMEONE who could release my husband.  I do that, and I probably shouldn't, but I HATE disorganization.  It is ALWAYS like that when it is time to leave a hospital.

TWO HOURS later, I finally got permission to take Jerry home.  Jerry was gritchy and uncooperative.  EVERYTHING I tried to do to help him, he didn't want.  A stranger from the alley could walk into his room, and he would let her do whatever -- but not me.

FINALLY, about 3:30 PM, I get him into our house.  I ask him sweetly where he would like to sit -- or would he like to lay down?  I get a towel and a sheet to cover up the recliner that he chose so the very leaky hole in his belly that has already drenched his white briefs and his sweat pants won't leak all over the chair.

I ask him if I can change the pads over the hole in his belly.  NO, JOY!  Just leave me alone!

Okay.  I decide it is probably better to go to the pharmacy and pick up his drugs than to hit him over the head with a frying pan, and I leave.

I feel sorry for myself as I drive to the pharmacy in the rush-hour type traffic.  I wait in a line of people at the counter, and I finally get his pain meds.  I think about driving to our other home and forgetting I even know this grump of a husband, but I remind myself of how strong I'm going to be, and I decide to go back to him.

I get back home.  He wants a pain pill.  He is in the recliner.  I ask him if I can clean up his leaky drain hole where the tube was pulled out -- which was a very painful process as the tube was quite long inside his body and the nurse had to pull it out of the very small hole.  I lift up his tee shirt to see how wet it is, and it is VERY wet.  I start to remove the drippy dressing and he hollers, "JOY!  Leave me alone!  It is fine!"

My feelings are very hurt.  I want to HELP him, but he won't let me get near him.  I ask myself WHY ON EARTH do you love this man so much?????  I decide to go hide in my sewing room and check my email.  I discover I have an email from the CPA who is doing payroll.  He had dated the checks wrong and had asked for instruction.  I, of course, had to go show Jerry the email which had also gone to him.  Jerry was mad.  He said he couldn't believe that the CPA couldn't do payroll right.  (Now, you know why I didn't want to do it!)  Jerry asked me to copy all the time cards from both stores (which were attached to the email) and bring them to him.  He sat in the chair -- with the leaky hole in his belly still spitting out fluid that was overflowing from the pad -- and he complained about payroll.

About that time, my cell phone rang.  It was Tammy.  She asked how he was.  I told her.  She asked if she could come over and check out his belly.  SURE!  She got here about 30 minutes later.  She walks over to her Dad who is still in the recliner and says, "Dad, can I look at your tummy?"

"Sure", he says, as sweet as can be.

She lifts his tee shirt and, of course, notices the river of light red fluid all over the place.  She gives him instruction and asks if she can do this, that and the other thing, and he says, "Sure".

I'm in the kitchen just behind them, and tears are running down my face because I feel like the biggest failure on Earth as a nurse and as a wife.  Boo hoo.  Poor me!  Then I switch to Boo hoo, poor Jerry, he is going through such an awful ordeal and so much pain, and his wife is a big cry-baby!  I finally get control of myself and fix dinner for the three of us.  Jerry is in a better mood because Tammy has cleaned him all up.

We eat -- Tammy leaves after telling me that Jerry yells at me because he loves me -- and Jerry goes back to his chair.  I'm okay, and I decide to be sweet to him.

Are you okay, honey?  Are you in pain?

YES!  I'm okay Joy!  And, Yes, I'm in pain!  What do you think!?

And it starts all over.  I can't quit crying and feeling helpless.  He can't quit being grouchy.  I decide to just go HIDE and leave him alone.

I go out later to retrieve something on the table next to him.  He wants to know why I'm not in the room with him.  I tell him I'm tired and want to go to bed.  It is 7:30!  He says he wants me to be there with him.

WHAT!?  WHY does he want me there?  He won't let me near him?  I can't do anything but look at him and feel sorry for him and for myself.  I decide to sit on the couch a little out of his view.

He turns his head and actually LOOKS at me for a second, and he notices I've been crying.  Then he realizes I'm not handling all of this very well.  AND he realizes he has been a total *****!

He gets UP out of his chair -- walks over to the couch where I am sitting/crying -- and he tries to bend over to kiss me.  He nearly passes out from the pain of bending over and apologizes to me.

I feel even horribler than I already did for causing him more pain.

On and on it went like this until about 9:30 last night when we finally went to bed.  He complained about the temperature being too cold.  He ALWAYS does that, sick or well.  I turned it up for him.  I covered him with an extra blanket which he later complained was too hot.

I got up 4 hours later to give him a pain pill.  As I was holding the glass of water above him and aiming the straw towards his mouth, he hit the glass with his hand and we spilled water all over his shoulder, neck and pillow!  I had to go get a towel and mop all that up.

I am the most HORRIBLE Nurse!

Give me something to clean.

Give me something to type.

Give me something to organize.

But DON'T give me a sick person.

Now, today is here.  I am fine -- so far.  Jerry said he wanted to have prayer this morning, but he hasn't gotten up yet.  It is 9:15.  Payroll has to be done.  I better go check on him.

PRAY I don't drown him!

Hugs, Joy


  1. Dear Joy, how were you able to write exactly the same thing that happen to me? My husband had a knee replacement and the only thing I was good for was his sounding board. He beat me down so bad with his words and nasty moods. Believe I was ready to kill him or leave him. The only way I got through it was the word of God. I felt the Lord said it was ok to hate his actions but not him. The scripture about not fighting against flesh & blood kept coming to mind. I'll be praying for you both.

  2. I've also been through a similar experience, caring for a husband who was in a neck brace for five months. At the same time I was also caring for our six week old son who was hurt in the same car accident. I certainly had two babies to care for, neither one had patience and required lots of special care, medicines, special food, and doctor visits out of town. I will be praying for you and Jerry.

  3. Joy,
    Fourteen years ago this week (Thanksgiving week) I had a "bulby" (what I named my lymph drain) attached to my underarm. What a mess that was and no...I didn't let my husband help me. I don't know why really. It is just that with the cancer diagnosis and everything, I was probably having a little pity party. You can be a Christian and still go through the disappointment and anger that comes with cancer. Please don't worry or be sad, the feelings that Jerry is having are normal and he will come around. We control freaks (I'm a retired registered pharmacist PU'72) have been dealt a real tough blow with this one. Take comfort in knowing that your/his faith will ultimately pull him through. Blessings on this Thanksgiving to you both. It will get better.
    RPh Diane from Indiana

  4. So, so sorry for all this pain... It's a wonderful blessing to have Tammy to help out when needed.

  5. This too shall pass..the strongest men make the worst patients..maybe because for once in their life they have no control over the situation.dont take anything personal because the grumbling s have nothing to do with's just like a teapot letting off excess steam. I would say go sew but if you are like me you can't sew when you are upset. Cleaning is the better just grab your magic rags and go to this time next week you will have your JOY back..take care..the other Joy


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Hugs, Joy