Thursday, April 30, 2015

His and Her Chores

Wahoo!  I can now say I am experienced at mowing the lawn with both a push mower and a riding mower.  I cut for ages today on the new John Deere and the yard looks fabulous.  We have 10 acres.  I didn't come close to getting it all, but I made a good dent in the area around the house.  I have loads of offers for help with the cutting including from my parents who live right next door.  They help as much as Rudy will let them.  Rudy still hopes to get going on it again, but for now, he's weak as a kitten.


Rudy and I have divided our around the house chores ever since we were married.  I only remember mowing the grass once during all this time.  Truthfully, mowing looks like fun (way better than cleaning toilets or doing dishes) but I never wanted to learn because I could barely keep up with the jobs that had become mine.

Now that Rudy is unable to do his jobs, I have had to take them on and it's been really hard. It's not hard just because of the increased work.  It's hard because I am clueless about so many things.  I didn't know how to start a mower.  I don't know where he keeps manuals or keys.  I don't know which gas is used where.  I think some things use special gas but I don't know which things.  He has lots of gas cans but none are labeled so I don't know which gas might be special.   I don't know the medicine routine for our pets.  I could go on and on.  And for the record, if I were the one who was sick, Rudy would be clueless about just as many things.

I am not looking for sympathy here. I'll figure things out eventually.  Rudy will help me when he can.  Right now, he's too weak to even explain much.  My parents will help.  Our friends and family will help.   You Tube is a lot of help.  And no matter how hard what I'm doing feels, it doesn't come close to what Rudy is dealing with.

My main reason for making this point is for my married friends who may be living "divided lives" when it comes to chores.  Take the time to learn more about the things your partner does.  There are so many circumstances that could come up where the knowledge could prove invaluable.

Tuesday, April 28, 2015

I've Changed

I'm not the same.  I've changed.  Today, I had a glimpse of the person I'm turning into.  It looks like the new me will be far less willing to put up with things that aren't right.



I set out to buy a John Deere mower.  By myself.  Most any female has experienced the dark side when shopping for something typically thought of as a male item.  We are sometimes ignored or talked down to and sometimes even lied to.  I have avoided that most of my life by making sure Rudy was always with me if I suspected there might be a problem.  Today, I was on my own.

I walked into the John Deere dealership in Newnan (Ag-Pro).  There were 4 men in the store - 3 behind the counter, 1 at a desk.  All of them were in close proximity and all of them saw me. Two were on the phone.  They all continued about their business.  I didn't even get a wave, a nod or a hello.  After standing patiently in the middle of the store for what seemed like ages, one of them said he'd be with me in a minute.  His idea of a minute was different than mine and he was obviously in no rush. Two other men walked out onto the floor and talked with the others.  So now, there were 6 men ignoring me.  I felt less than invisible.
This could have been their easiest sale of the day.  I knew exactly what I wanted.  I had called to make sure it was in stock.  I knew the price.  All they would have had to do was ring it up.  They lost the sale.  I walked out.

Something in me just seemed to snap.  There's absolutely no need for me to tolerate such rudeness.  I don't have the luxury of sending Rudy to take care of things for me.  I'm going to have to get tough.

DON'T go to the Ag-Pro
John Deere dealership in Newnan!


I didn't waste time or energy giving them a piece of my mind.  I thought about writing a quick note to the company, but decided they aren't worth the effort.  What do I care if they improve?  Instead, I decided the best action would be to WARN all of my friends - if you want good customer service, DON'T go to Ag-Pro in Newnan.

I ended up buying the mower at Home Depot.   The price was exactly the same.  Kimberly took good care of me.  She rang it up, hunted down ramps, helped load the mower, climbed in the truck to help tie it down, and more.  Now that's how it's done!

I have been thinking about this incident for a good part of the afternoon.  I have a number of friends who, for one reason or another, are on their own.  There's no man to "take care of them".  Most of those women seem to have a stronger attitude than my married friends.  When I say stronger attitude, I'm not implying they are pushy or rude or anything like that at all.  They just seem to have higher expectations and a can-do (or more precisely, a must-do) attitude.  I'd never really thought about any of that before.  Also, I've never thought of myself as a wimp, but looking back, I guess I was.  I'm changing (because I have to) and there's no turning back.

Monday, April 27, 2015

Ditto

Today, when the nurse asked Rudy how he was doing, he told her to just look at last week's chart and write "ditto".   The bloodwork shows the platelets are still horribly low - 13.  That's lower than last week.  The good news is, everything else having to do with the immune system seems to be trending back up.  The platelets are often the last to bounce back so maybe they'll look better next week.

Last Thursday was his worst day.  He felt bad and looked bad.  I was pretty concerned.  This weekend he improved, but he continued to run fevers.  They go up and down, mostly hovering between 99.5 and 100.5.  Terri said if it goes over 100.4 and stays there for more than an hour or so, to give them a call.  They would probably prescribe antibiotics or something like that.
 
His liver enzymes all look pretty good, so the hepatitis hasn't messed it up so far.

His sodium has been low, which may explain why Rudy has suddenly decided potato chips are the best thing ever.  He's never been one to eat chips very often, but now he's loving them.  I may have to make an emergency grocery store run tonight for chips and cinnamon rolls.  We can't run out of either of those.

I used to be able to hold my head up when checking out at the grocery store.  My cart was filled with healthy stuff.  These days my cart is filled with all sorts of junk. I might start shopping late at night and wearing a disguise.




Friday, April 24, 2015

Update Apr 24th am

Yesterday was pretty bad, especially earlier in the day.  Fever,nausea and hacking up fluid are the main issues that are making him miserable.

He started improving a little towards evening.  I got a little burst of energy around dinnertime and decided to go trim bushes.  It felt good to have control over SOMETHING.  Rudy sat on the porch and talked to me while I trimmed.  That was the happiest he'd looked all day.  Sitting outside was a real treat and I think I'm going to make a point of trying to get him outside a little more.  

Our bushes looked much better after their trim.
These may or may not be our actual bushes.
He had an Ensure earlier in the day, but he didn't have any chewable food til around midnight after I'd gone to bed.   Then, he ate 1 cinnamon roll.  He said he struggled to get it down.  I woke up around 2 and he was still up, but dozing a little.  We sat around for a little while and talked.  He seemed improved.  He went to bed around 3.  I'm not concerned about his sleep.  He slept a good bit yesterday during the day.

I putzed around the house and took advantage of the time to work in the kitchen.  When he's up and feeling nauseous, it's torture to him for me to bang around in the kitchen.  It's hard to find things to do in the kitchen that doesn't make noise.  Open style kitchens are great for parties, but terrible for our circumstances. 

After getting some things done in the kitchen, I sat and read for a little while hoping to get sleepy.  I did and was able to go back to bed and slept well. I got up around 9 and Rudy was sitting up in his chair.  He said he'd gotten up around 8:30.  He'd had a decent night.  He was feeling a little queasy, but that's not unusual for him these days. Now, he's back asleep in his chair.

I haven't had enough time to see how he's doing today,  He didn't have a trashcan in front of him, so that's good.  His face doesn't look pinched as he's sleeping, so that's good.  He sounded halfway cheerful when we talked, and that's great.

I told him yesterday that if he still wasn't eating today, I wanted to call CTCA, but he's not in favor of that.  I hate that this is Friday and our chance to have the input of Dr. Thompson's team is limited to today.  Of course we can go to CTCA anytime, but if it's the weekend, we wouldn't see his people.  

In a way, I see Rudy's point.  He said "What could they do?"  I don't know what would be done for not eating.  The appetite pills don't help.  There are tubes that can be inserted for draining fluid off your lungs or stomach, but I sure hope he doesn't have to go through that.

I sure hope today is better.  I hope he nibbles more through the day.  I hope he'll branch out from cinnamon rolls.  As long as I'm hoping, I hope today is the day a cure for both cancer and Hepatitis is announced.  

Thursday, April 23, 2015

Hold Calls - EMAIL ME

Rudy is feeling really bad - all Hep symptoms (see update below).  The phone keeps ringing and I've muted most of them and am carrying the others with me.  I can't turn them off because I want the lines open for a couple of important calls.



If you want to talk to me, EMAIL ME.  I'll check my email as often as I can.  

I don't want to avoid anyone.  I CAN talk to you - that's no problem - but I just don't want ringing phones to wake Rudy up whenever he's able to rest.

In fact, it would be helpful if people would just do this indefinitely.  

You can also text me or message me on Facebook, but I don't check those messages quite as often.  I'll try to do better.


Hepatitis Symptoms

He's experiencing the full range of hepatitis symptoms and they are just as described to us - like a case of the flu.  This is a flu that could go on and on.  Fevers, sweats, nausea, loss of appetite, aches and pains... he's miserable.  

He didn't sleep last night.  He was too nauseous to take the pain meds.  He took one this morning and has been sleeping some off and on.  He may need to increase his pain meds again just to deal with Hepatitis, but that will have to be discussed with the doctors.  I'm about to start making some calls.

Wednesday, April 22, 2015

Apr 22 Update - Fever and More

This morning I celebrated Earth Day by carting off a car load of papers to be shredded.   Newnan had a special event going for free paper shredding and electronics recycling.  I had paperwork from way beyond the 7 year tax minimum.  It's gone now!   My sweet parents went with me.  They stay much more on top of things and only had a small bag of papers.  They only went to help me out.  ♥ ♥ ♥



Rudy felt horribly fatigued when I left this morning, but when I returned around lunchtime felt a tiny bit improved.

He went out on our porch for some fresh air and there were bit and pieces of a sofa that we have been trying to get over to the dump.  Foam and fabric was all over thanks to our pack of very mischievous dogs.  Naturally, none of them accepted responsibility.



Earlier in the day, Nancy and Mike had called to see if this was a good day to help cart the sofa away.  Rudy had said no because he felt so bad.  Once he saw the foam all over, he told me to call them back.

Mike helped Nancy and I load everything, then Nancy and I took a truck load of stuff to the landfill.  Our porch no longer looks like it belongs to the Senoia Hillbillies.

When I got back from the landfill, Rudy was feeling a good bit worse...  fatigued, achy, slightly nauseous, and running a fever - around 100.2.


Terri from CTCA had called with the latest Hepatitis blood test.  The C is still dormant, but the B is running wild.  I wish I had been there for that call.

I have read a tiny bit about Hepatitis B and it looks like there's not much to help ease the symptoms.  I found this article which gives 7 tips.  Most of the tips are similar to what someone with the flu might be advised to do.

Every time I read I keep coming across conflicting info about how rare it is for someone to get a Hep virus from a transfusion.  Many stats are incredibly low.  What the heck is going on?  The acute infection comes on after first being exposed, so this is recent.   It pretty much has to be from something medical.  He hasn't exactly been partying these last 6 months.

Here are a few more quick facts from a CDC article -

  • Symptoms begin an average of 90 days (range: 60–150 days) after exposure to HBV.  
  • Symptoms typically last for several weeks but can persist for up to 6 months.
  • For acute infection, no medication is available; treatment is supportive.
  • [Acute HBV] will be detected in an infected person’s blood an average of 4 weeks (range: 1–9 weeks) after exposure to the virus. About 1 of 2 patients will no longer be infectious by 7 weeks after onset of symptoms, and all patients who do not remain chronically infected will be HBsAg-negative by 15 weeks after onset of symptoms.


Everything I learn leads to more questions.  I'm tired of learning about medical stuff.  I think I'd rather learn about hang gliding.  I'm afraid of heights, but that would be less scary than all this mess!

Tuesday, April 21, 2015

Appointment with Hepatologist

We finally have an appointment with a Hepatologist.  It will be a little more than 2 weeks away. They *may* be able to get us in sooner.  If there is a cancellation, they will call us.  The appt is with Dr Divina Bhasin in Atlanta.



Rudy seems a little better today, but he's not wanting me to use positive words to describe how he feels.  :-P   I can say he feels less horrible than yesterday.   He's still super tired.  His only active time today was a brief ride in his hotrod.  When he came in, he crashed in his chair and he's still there sleeping.

Our nightmare began on this date exactly 6 months ago.  We thought he had bronchitis or possibly even walking pneumonia.  I still assumed I was married to a man who was strong as an ox.  It seems like yesterday and then again, it seems a lifetime ago.  Our lives have completely and irreversibly changed.  I am thankful for the knowledge I have now, but I miss the magic of ordinary days.  I will never again take days like that for granted.

On a different note, I'm so glad the sun is shining today.  I'm sick to death of the rain and humidity.  Yesterday when I left the house , my hair looked decent.  Just like Cindy Crawford's hair, only completely different.  :-D  Well, at least it was smooth and relatively frizz-free.  At some point late in the afternoon, I caught sight of myself in the mirror.  I swear, this was my new hairstyle -



I had plans to grow my hair long and then donate it to Locks of Love or some organization for wigs for cancer patients.  Now, I'm picturing some poor soul wearing a wig with my hair in it and how they would feel if they were out somewhere and it frizzed completely out.  Those patients deserve smooth, silky hair.


Monday, April 20, 2015

Fill 'Er Up!!!

Today's lab results showed platelets at 16, hemoglobin at 7.8, white blood cells at 1.6, and red blood cells at 2.46.  Low, low, low.  His heart rate is high, too -127.  His heart is picking up the pace in an attempt to get platelets.


Bag 1 of 3
They sent him over to the infusion room to get his "tank" filled.  He got 3 units of blood.  That's a lot!  Each unit of blood takes about 2 hours to infuse.  We didn't get home til around 11pm.  It's been a long night.  He also got a B-12 shot, so maybe that will help his fatigue as well.

Chantrese (sp?) was one of his nurses in the infusion room tonight.  Rudy was very taken with her.  At one point, he had bent over because his back was hurting a bit from sitting and she noticed and came over and touched the back of his head.  He said she had the most gentle touch - like a mother's touch and a wonderful smile.  I wish I'd gotten her photo.

His liver is still testing fine except for EST or something like that.  Whatever it is, it is probably elevated because of medications, not the hepatitis.

We still don't have our appointment time with the hematologist.  That doctor's scheduler should be contacting us soon.

That's the main news of the day.  Here are some extra tidbits -

These are two of Rudy's favorite nurses in Dr. Thompson's office.  They are both soooo friendly and they always make a fuss over Rudy.

Marsha

Tracy

Since it was such a long day, I took a break and went for a walk down by the pond.  It's really nice and there's so much to look at. The pond has a pretty fountain. All sorts of  plants are growing. I recognized some of them - daisies, iris, daylilies and more.  It will put on a show for months.  There's a gazebo with rockers and benches.  There are two swans. They stayed very busy preening.  There was also a heron.  It stayed very still.  I watched and watched and finally figured out that it's fake.  Ha.

  

Last, but not least, this is our cat, Cindy Lou.  She's decided she prefers to stay indoors.  Our dog Teddy annoys her when she goes outside.  She looks like she could use a bit more exercise, doesn't she?


Sunday, April 19, 2015

My Husband Doesn't Trust Me

I made smoothies today.  Since I include a little of this and a little of that, they never turn out the same, even when I use the same ingredients.  Rudy would prefer a more consistent method.  He would also prefer that I use the exact same ingredients day after day, even though I have told him over and over that the ingredients are SUPPOSED to be different each day.  And for some reason, he thinks I try to sneak in extra healthy things (Like that's a bad thing???).   When it comes to making smoothies, he just doesn't trust me.




Our smoothie conversation today went something like this -


R:  I don't want you to add anything extra.  Just make a regular smoothie... the kind I like... with ONLY the things I like.

D: OK

I whip up a masterpiece and take it to him.

R:  What's in this one?

D: Spinach, mixed fruit, protein powder.

R:  You didn't add anything else right?

D: No.

R:  What's this?  (points to a bubble in the glass)  Is this something you added?

D: No.  It's a bubble.

R:  I hope you didn't add anything.

D:  OMG.  Do you think I'm trying to poison you or something?

R:  (He smiles, but still looks suspicious.)

D: Taste it.  (He does.)  It's good isn't it?

R: Yes.  (He's drinks it down and I drink mine, too.  It's really good.)


I may or may not have added a vanilla Ensure, which he insists he doesn't like.  The man needs some extra calories and vitamins.  He can't live on cinnamon buns alone.

I have no idea why he doesn't trust me.  Even though I am generally incredibly honest, he knows perfectly well I have no problem being deceitful if it's for his own good (or if it'll get a good laugh).   :-D

Saturday, April 18, 2015

Symptoms - Hepatitis or Cancer?

Rudy has a number of issues going on and for some of them, we have no idea if it's the cancer, the hepatitis, or maybe even the after effects of chemo or radiation.

First, he still tired.  REALLY tired.  Walking from one part of the house to another requires a rest to recuperate.  He's still pushing himself to do a few things he enjoys.  The most taxing is going for a ride in his hotrod, but that's also the thing that's the most fun.  Other than that, he's either watching TV or playing solitaire with lots of catnaps.  It would be incredibly boring except he's too tired to feel bored.  He's not even wanting to talk on the phone.  This is a tired that is far beyond anything most of us have experienced.

He's running fevers.  We were told that if they ever went above 100.4, we were to call CTCA.  They haven't.  The highest we've seen in the last few days is 99.8.  He keeps breaking into sweats on and off, too.  Fevers are common with hepatitis, so it's probably that.

He's having a bit of joint pain.  Mostly in his neck.  That may be from falling asleep in his chair with his head at an angle.  He uses a heating pad pretty often for that.

He has some knots on the side of his neck. This is not on the side with joint pain.  These are new.  They don't hurt.  They might be swollen lymph nodes.  Is that the cancer?  Is it hepatitis?  Is it some other crazy thing he's been struck with?

With the way his luck is going, I wouldn't be surprised if he contracted leprosy from an armadillo.   I wouldn't even be surprised if he had a kidney stolen by aliens.  


His appetite stinks.  My cooking seems to be getting worse.  Not a good combination.  Rudy is still loving cinnamon rolls, but today, even cinnamon rolls are a challenge.  His appetite perked up briefly a few days ago.  He was almost too tired to lift a fork, so it took him forever to finish, but he was at least enjoying it.  Today, he's just not hungry.  I made a halfway decent meal - pork chops, pinto beans, collards and corn bread.  In the past, that would have made him very happy.  He tried to eat some of it, but only because he felt like he should make an effort since I'd gone to the trouble to make it.  I let him know right quick that I didn't care about that.  I would rather he have the cinnamon rolls and feel happy about it.  After a little while, he did just that.  He should just do anything that makes him happy.

As for me, I'm tired to the bone.  I'm going through another bout of not being able to sleep more than 3 or 4 hours at night.  Then I drag through the day, not able to get much done.  On the days when I can get a nap, I do pretty well.

Today, I tried to take a nap 3 times.  Each time, just as I fell asleep the phone rang.  Every charity on earth has us at the top of their list.  One particularly irksome breast cancer charity continued to try to get money even after I politely explained our situation.  Apparently, they have a plan so that people like me (who are scared to death that bankruptcy could be just around the corner) can give just $15 a month.  Seriously?  They did that to me twice in the last 2 weeks.  I think it's in very poor taste and I took the time to let them know.  On the other hand, the firefighters group that called was very nice.  Unfortunately, we're in no position to help anyone right now.

I don't want to end this post on a bad note.  Despite all these side effects and setbacks and trials, we are able to find things to smile about.  There are still good things in our days.  A good hug is one of the best.  There's nothing like a good hug.



Thursday, April 16, 2015

Hepatologist Appointment - Hoops to Jump Thru

It's taking time to get an appointment with a hepatologist.  CTCA is setting everything up.  The hepatologist's office had a VERY lengthy referral form.  That was faxed over to them yesterday.  They required lots of additional records.  That was faxed over, too.  They need a scan.  That can't be faxed.  It has to be mailed.  CTCA is sending that thru expedited mail.  Once the hep. office has everything, hopefully, we'll get an appointment in 1 to 2 weeks - that's the fastest timetable allowed on the referral.

CTCA worked as fast as they could to get
 all the paperwork over to the hepatologists office.

If this doctor were part of CTCA, we probably would have already had our appointment.  They have lots of specialists there, but this is one field they don't have.  In fact, if you are a liver patient who lives in any city in Georgia other than Atlanta or just north of Atlanta, you're out of luck.  Prepare to take your ailing liver on a long haul.

Maybe, by the time Rudy sees this specialist, his acute infection will have subsided.  

Good grief.  Some days I feel like I'm a medical student and let's just say I don't think I'm going to be finishing at the top of the class.   We have so many questions.  Feel free to add to these - 
  • If the acute hepatitis goes away (and just becomes antibodies) will he really be able to start Novolumab?  I read just enough online to wonder about that.
  • If he can't use Novolumab, what then?
  • Hep. is spread thru bodily fluids and blood.  Aside from the obvious precautions, is there anything we need to be cautioned about?
  • Are caretaker psychiatric evaluations available at CTCA?  I think I may need one.  Seriously.

Tuesday, April 14, 2015

Hepatitis

According to Cancer.Org, "Hepatitis is the most common disease transmitted by blood transfusions."  It's rare, but it happens.  Rudy has full blown Hepatitis B, with antibodies of Hep C.  I don't know much about these, but I'm getting a crash course.



One of the screening tests done before starting Novolumab (immunotherapy) is for Hepatitis.  They got the results today and called us with the bad news.

Rudy has had 2 transfusions.  One of them probably had this little surprise.  Terri said this virus was likely contracted during the last 6 months.   Blood banks try very hard to weed out diseases and viruses.  They do a pretty good job, but it's not perfect.  There is about a 3% chance of having a transfusion with something in it.  Rudy, apparently is in the 3%.

Update: I have been worried ever since this diagnosis.  There was no way to know for sure when and where Rudy got this.  I had transfusions back in the 1980's.  Could I have contracted it and passed it along to Rudy?  Had we both been living with it all this time?  If either of us got it before the cancer diagnosis, it seems probable that we both would have it.  After Rudy died, I stuck my head in the sand.  I did not want to be tested until I knew I could handle the news without wanting to throw myself off a bridge.  I finally reached that point.  I decided that if I had it, I was going to learn everything I could about it and share what I learned with others.  I geared myself up and had the blood drawn yesterday.  I got my results today.  I don't have Hepatitis!!!!  Hurray for me.  But, that means it’s pretty certain that Rudy got it from one of his transfusions while he had cancer.  I have many thoughts and feelings about that, but anger is not one of them.  

This explains many of his current symptoms that have been hanging on - loss of appetite, fatigue, nausea.  It can also explain the grayish tint to his skin that I have been seeing for ages.  I thought that was due to his blood count or the cancer or something.

We will be seeing a specialist soon.  CTCA does not have a Hep. specialist, so we'll have to see someone outside the system.  Typically, the body will fight off the active infection and build antibodies.  Rudy is supposed to rest. He's out on the mower now, so he's not exactly adhering to advice.  He's supposed to drink lots of fluids and eat well.  He's good on the fluids, but the loss of appetite is making good nutrition a challenge.  There is also an antiviral drug that is sometimes used.  We'll know more after we see the specialist. We don't have an appointment yet.  CTCA is going to help us set that up.   It looks like immunotherapy is on hold 'til the Hep battle is won.

I was holding on by a thread emotionally before this news.  I even wrote a sad post about how low I was feeling this morning, but I took the post off this afternoon, because I had decided to fight thru and remain positive. Then came the phone call.  So much for staying positive.  After this news, I was stunned.  Now, I am mad and determined.  That feels better than drowning.  I am not mad at CTCA.  It's certainly not their fault. They get their blood from the blood banks, just like every other hospital.  I am not even mad at the blood banks.  I hope it's not a case of negligence. I'd like to think that everyone does the best they can.  I'm just mad, period, with no place to aim it.

God doesn't give us more than we can handle, right?  Well, God really must think Rudy and I are very, very strong.  My prayers lately, have been pitiful little cries for help.  Today, they are more like, "OK, God.  This is just plain crazy and we really need some help! And by the way, I think this is about all we can handle, so I hope there won't be any more crazy surprises."  I generally don't get sassy when I pray, but I feel sure He understands that I'm feeling pretty nuts right now and will forgive me.

My warped sense of humor is still intact.
I saw this when doing a little research and it made me smile.
Smiles are hard to come by.
As Rudy and I slowly lose our minds, I hope you will continue to pray for us.

Monday, April 13, 2015

Minimalist Dreams

I wonder if there's ever been a study done on the number of people who survive a serious illness (as either the patient or the caretaker) and then become a minimalist.  I'll bet the number would be much higher than the general population.

Clutter and chaos in the house is a side effect of cancer that I have never seen mentioned.  It should be.  It can lead to insanity.

This is thankfully, NOT our house, but our house FEELS like this.
As a result of the clutter, I have become obsessed with dreams of living a minimalist life.

So many things needed to be changed after Rudy was diagnosed.   I abandoned my upstairs loft and craft room.  My desk is our dining table where I can see everything that's going on.

Cabinets and extra shelves hold bills and medications, bills and records.

These are not our medications, but we probably have more than this and even though I try to keep them organized, they keep getting spread out all over the place.

New appliances take up space on our kitchen counters - a juicer for making all that beet juice and a waffle iron that Rudy requested after eating a Belgian waffle that tasted particularly good (when nothing else did).  A crock pot is usually out, too, filled with the bone broth he's meant to be consuming daily.

Stuff is everywhere and the house never, ever, ever feels tidy.

Added to that are the things we keep getting from people who love us - cards and photos and plants and things to do if we get bored.  We keep these things out to remind us of how much we are loved.  (I hope they still love me in my new home at the funny farm!)

All of this stuff is either necessary or sweet, but the bottom line - every flat surface in the house is covered.  Seriously!  Every single surface.

Whoever wrote that clutter is a source of stress was right.  I don't resent the changes we have needed to make.  I know it may sound that way, but I really don't.  I just want desperately need to see some empty space somewhere in our house.  I keep trying to simplify, but for every thing I get rid of, something else comes in.  I'm not giving up.  I'm going to try harder.  And if anyone feels compelled to give us something, please let it be food... in a container that doesn't need to be returned.  I feel rude saying that, but seriously, our house can't hold any more momentos.  I'd rather have a hug than a gift.

By the way, this whole tangent came on after my sweet friend, Shirley, sent me a message about a fun thing I might enjoy - a coloring book for adults.  Have you seen them?  They are suddenly all over Facebook and Pinterest and they really are kind of cool.  Before cancer, I no doubt would have enjoyed it.  Now?  Not at all.  If I got a coloring book, I'd have to find some place to put it and there is absolutely no place for it.


No Immunotherapy Today

Immunotherapy was supposed to have started last week.  It didn't because his platelets were too low - 23.  We went to CTCA again today, hoping to get started on this new treatment.  His platelets are still too low - 30.  That's a tiny bit better than last week, but still waaayyy below normal.  Normal is between 150 and 450.
His hemoglobin is also low, but just over the number that would mean a transfusion.

His white blood cell count is low - that means he's back to needing to avoid company and crowds again.

Terri feels confident that these numbers will come back up, just like they did last time.  We just have to wait on his body to recover from the chemo and radiation.   By they way, we sure do love Terri.  She's the nurse practitioner, which is just one notch under our main doctor.  She's the whole package - brilliant, kind, sweet, funny, and upbeat.  She calls Rudy, "Uncle Rudy".  He LOVES that!  She gives him a big, from-the-heart hug every time she sees us.


This is not a good photo of Terri.  It doesn't even come close to capturing her vivacious personality.  She's forever in our hearts.

Rudy's appetite isn't all that great, but it's not as bad as it has been.  He's eating. Not much of what he wants is healthy, but at this point, I'm just happy to see him eating anything at all.  He weighs 168 now.  So what is he eating?  He wants pizza and cinnamon rolls.  I would never have guessed he'd enjoy the pizza because he's not liking anything spicy.  I should know better than to try to make sense of any of this.  Just when I think I have ANYTHING figured out, something happens to let me know that I'll likely never figure out anything at all.

The one thing he is enjoying that is on his list of things he's encouraged to have - beet and apple juice.  It's a bit of trouble to make.  I thought we could take the easy way out and mix the bottled beet juice with bottled organic apple juice.  It tasted good to me.  Nope.  He prefers the fresh.  There'll be no shortcuts, I guess.




More Misc. News - 


This photo was on our nieces Facebook page.  Abby wore a Team Rudy bracelet when she ran a race recently.



Another niece, Sarah, made Rudy the most wonderful cupcakes last weekend.  I CANNOT believe that I forgot to take a photo of them.  They were so pretty and colorful, all decorated for Easter.  Sarah is getting so tall.  Sarah is a niece on my side of the family.  Abby is from Rudy's side.  Both of them are tall and look like models.  We have a lot of fabulous nieces and nephews.  Best of all, they are all really good people.  We are so proud of them all.

We had two wonderful visits this weekend.  First, our long time friend, Doyle came by.  It was so good to see him.  Doyle and Rudy have been friends since high school.

Next, Rudy's Aunt Jane stopped by. She lives in Buford, but had come down to Senoia with a friend, so of course she couldn't be this close without seeing us.

It was a wonderful day and really great to see everybody, but Rudy was pretty worn out afterwards.  Happy, but worn out.

Again, I wasn't thinking and didn't take any photos.

On the other hand, one day last week, I took a million photos of one of our kitties who was being particularly snuggly.  This is Sissy -


Sissy thinks she's a baby and likes to be held like one, too.  She's incredibly smart and very high maintenance.

As for me, I'm still going.  I can handle the big important things pretty well, but the stupid, little things are getting to me.  I feel like I'm drowning.  I haven't had a pity party in a while, but I think I'm heading for one.  I keep crying over totally ridiculous things.  Yesterday, it was a commercial.  Like I said, it's totally ridiculous.  I think I'm going to try hard to have a little fun the next couple of days (while force feeding Rudy nutritious foods).


By the way, if anyone wants to bring Rudy some tasty leftovers to eat, let me know!  I'm not having much luck getting him to eat my cooking.  Don't bring much - he may not eat it and I won't be able to eat it since I have to stay on a pretty strict diet to keep my IBS issues under control.  I wish I had a cook... and a housekeeper... and I might as well wish for a gardener and handyman, while I'm at it.

OH OH OH - speaking of handyman, I'm so proud of myself.  After we got the new floors, our washing machine decided to dance across the floor every time it was turned on.  I bought a couple of sets of anti-vibration pads to go under the washer and dryer.  The problem - Rudy is too weak to help.  If I had said anything to him, he would have insisted on helping, but he just shouldn't, so I kept quiet about it.  My dad would have gladly helped, but I didn't want him to pull anything.  Any of my brother-in-laws would have come down and helped, but they're all either really busy or have bad knees.  So what's a girl to do?  I figured out how to do it all by myself.  I hoisted that heavy washing machine up with hand trucks and while balancing the washer in the air by standing on the hand trucks just right, I used my free foot to slide each pad in place.  The pads work great.  The washer no longer dances across the floor.  I couldn't get them under the dryer.  There's not enough room to lift it with hand trucks.  I'll have to get help one of these days.  No rush.  The dryer doesn't dance and I can live with the uneven surface til help arrives.  Luckily the dryer isn't nearly as heavy as the washer.

Wednesday, April 1, 2015

Two Horses

A beautiful printout of the inspirational piece below was in the packet given to Rudy as he finished radiation.  It's wonderful.


Two Horses
Author Unknown
Just up the road from my home is a field, with two horses in it. From a distance, each horse looks like any other horse. 
But if you get a closer look you will notice something quite interesting... One of the horses is blind.
His owner has chosen not to have him put down, but has made him a safe and comfortable barn to live in. This alone is pretty amazing.
But if you stand nearby and listen, you will hear the sound of a bell. It is coming from a smaller horse in the field.
Attached to the horse's halter is a small, copper-colored bell. It lets the blind friend know where the other horse is, so he can follow.
As you stand and watch these two friends you'll see that the horse with the bell is always checking on the blind horse, and that the blind horse will listen for the bell and then slowly walk to where the other horse is, trusting he will not be led astray.
When the horse with the bell returns to the shelter of the barn each evening, he will stop occasionally to look back, making sure that the blind friend isn't too far behind to hear the bell.
Like the owners of these two horses, God does not throw us away just because we are not perfect. Or because we have problems or challenges.
He watches over us and even brings others into our lives to help us when we are in need.
Sometimes we are the blind horse, being guided by the little ringing bell of those who God places in our lives.  And at other times we are the guide horse, helping others to find their way.

That bit is very meaningful right now.  I hope Rudy takes it to heart.  He's always been the horse with the bell - the one who helps.  He's not so good at accepting help.  Right now, he needs to be helped and he has so many who want to.  Illness has so many lessons.  This is no doubt one of them.  Learn to accept help with an open heart and a great deal of love and appreciation.

Rudy insisted on cutting grass today even though he was super tired.  He insists the pollen doesn't bother him.  He insists that it doesn't take much energy.  He's also disregarding his low platelet count.  After cutting for maybe 15 minutes, the fairly new lawnmower busted a belt or something.  We had to get out the tractor and use it to haul the mower back to the barn.  Now he's worn slap out and of course, he had a really bad hack attack.  Is it just me or does it seem like God was telling him to NOT cut grass right now???