Thursday, February 23, 2012

It's the small things...

Paul ate a half of a pancake for breakfast this morning!  To many, this may seem like nothing.  To us, this is a miracle.  He has not been able to eat any "real" food for quite awhile now.  He only had to stop eating this morning because he was full...not because he was "gacking".  This gives us hope!  Hope that was starting to diminish the harder it became to eat.

Without a stomach, Paul will never be able to eat a lot at one time, but if he can actually eat food, he can eat a lot of small meals in a day.  He will always need to have high calorie smoothies to increase his caloric intake, but just the fact that he might be able to eat again makes us both really happy!

Wednesday, February 22, 2012

Had endoscopy today...

Fortunately, Paul's blood work looked good yesterday so they were able to do his endoscopy today.  The doctor discovered a stricture where his esophagus and small intestines were attached.  They were able to dilate his esophagus which should help him be able to eat better.  He will have to have this procedure done again in a few weeks because they weren't able to dilate it as large as it needs to be  (they didn't want to tear anything).  They wanted to do this procedure again in 2 weeks, but because of chemo, we will have to wait a little longer.  Paul starts chemo again on Feb. 27th.

The doctor was shocked that Paul had been able to get any type of food through his esophagus because the stricture had created an extremely tiny opening... He said that the reason he was "gacking" most things back up was because the esophagus was too small to allow anything to pass.  I guess that explains why Paul even started to "gack" on smoothies...things were just dripping through slowly.  The doctor also said the reason Paul was having so many problems with golf-size spit balls forming was because the body was producing more saliva to help with this problem (food not getting through).  But, it actually was causing more problems because there was nowhere for the spit to it was just sitting there forming big blobs!

Ironically, the doctor told us what everyone has been saying...Paul needs to gain weight. He told us to try and get 4000 calories a day...Yeah, right!  We have been lucky to get 1300 to 1500 calories a day the last couple of weeks.   I would be happy if we could 2500 calories a day... He now weighs 169 lbs.  At 6' 3" that is a tad bit underweight!  He is looking very thin.  We are hoping that it will be a bit easier now to get food in him.  I have also figured out another way to get more calories in his smoothies, so hopefully that will help!

The doctor also told us there were no signs of cancer in his esophagus.  They did biopsies just to make sure, but it looked good from what they could tell. The doctor that did his endoscopy today is the same doctor who discovered his cancer.  He told Paul, that God had definitely had a hand in them finding Paul's cancer when they did.  Often times, Paul's type of cancer is not discovered through endoscopy and rarely is it discovered before it has metastasized.  We do feel very blessed that it was discovered before it had progressed further.  At this point there are no signs of cancer, but they need to do the chemotherapy because this type of cancer has a very high recurrence rate. 

We are feeling optimistic that today's procedure will help Paul!  I guess time will tell...

Saturday, February 18, 2012

Hair today...gone tomorrow...

Paul's hair in the shower...
This is only some of the hair... quite a bit had already gone down the drain!

Paul's hair decided to start falling out yesterday.   It was minimal yesterday, compared to today.  These pictures were taken this morning.  I must say it was a bit freaky for both of us watching his hair come out.  It reminded me of when we shower our dog and all her fur is coming know how dogs shed...

 It is not so fun finding hair everywhere.  Paul said it was especially nasty when it was going in to his mouth while he was showering!  Anyway, I guess it is time to pull out the clippers and shave his head!


Had to have some fun...never had a mohawk before!

Hair is buzzed off...

Now Paul's head is bicked!

 He is still so handsome! I love my man!  Now he is off to find some new sportin' beanies!

Tuesday, February 14, 2012

Chemo round #1 complete!

After being hooked to an IV bag for 2 weeks, Paul completed the bag of chemo last night.  He will go in on Feb. 21st and have his blood checked.  If his blood is at acceptable levels, he will have his endoscopy on Feb. 22nd.  If all goes as planned, his second round of chemo is scheduled to start on Feb. 27th. 

I really hope that they are able to do his endoscopy.  He is struggling to get food down, even liquids.  He is still losing weight... TPN is just around the corner if his weight loss does not stop.  It is not like he isn't trying to eat...his darn esophagus is just one big spasm!!!!

I am so grateful that I have my Valentine here with me to celebrate today!  We have been through a lot this past two years with his health.  I treasure everyday I have with him....and hope to have many more Valentine Days to share!

Thursday, February 9, 2012

Chemo brain...

So, last week we listed our king (solid pine canopy) bed on KSL.  We were asking $475 which was a good deal because it included the mattress set (in great shape).  Anyway, a guy comes to buy it and asks if we are set on the price.  Paul asked him if he had cash.  He said yes.  Paul said, "Okay, how about $350?"  My mouth dropped open.  When he looked at me, he knew that he had said something wrong.  The guy even looked at him funny and said sure!  Then it hit Paul, he said, "Weren't we asking $375?"  Both the guy and I told him that we had listed it for $475. Ironically, Paul is the one that told me to list it for that price.  Paul asked the guy if he knew what chemo brain was.  They guy just shook his head no.  In fact, he didn't even care to know what chemo brain is. 

In all honesty, I was a little bugged that the guy didn't show more compassion.  Especially since we told him we were using the money from the bed to pay for medical bills.  He was just pleased that he had gotten a GREAT deal!  I guess I could have said, sorry we can't sell it for that...but, Paul was so embarrassed and he felt really bad.  I told Paul it was okay... I wasn't mad...Who knows, maybe the guy had a greater need than us.  Needless to say, I still love my Paul!  I just need to make sure I handle all the "important" things!

On Monday, the Home Health nurse came out to change Paul's needle and chemo bag. What a fiasco!  Paul called and talked to the pharmacist that morning to make sure everything was set up.  The pharmacist told him he had Paul's order there and was going to get it completed that morning.  He gave Paul the number to call the nurses to make sure we were on their rotation.  He called and had to leave a voicemail.  They called us back and told me that they would be out around 6:30.

We got a call from the nurse about 4:30 letting us know she was planning on coming.  Paul asked her about the chemo drug because it had not arrived yet.  She explained that someone had let the ball drop and it wasn't ready.  The story about the delay had something to do with the pharmacist not having the information he needed to fill the prescription.  He sure seemed to know all about it when Paul talked to him that morning.  Anyway, she told them they needed to expedite it, because they weren't planning on sending it until their 6:30 p.m. run.  She told them Paul's chemo was going to run out at 6:30 and they needed to get here by then...They told her they would get it here by then. 

Well, needless to say, she got here at 6:15 and there was no drug.  She called them and they told her they had sent it out at 6:30.  So, we waited...the girl arrived at about 7:15.  She brings in the box...only it wasn't Paul's chemo drugs.  She goes back out to her car and discovers that she did not bring his box of chemo with her.  She had grabbed the wrong box to bring.  They placed another phone call.  They said they would get it out as soon as possible...

In the meantime, our nurse had disconnected Paul from his chemo bag and had replaced his needle in the port.  She tried to get the IV bag disconnected from the pump, but it was stuck!  Paul needs a pump to infuse his drugs, so she called and asked for them to send us a new pump.  They told her it would take a couple of hours. WHAT?  She decided to mess with the other pump while we were waiting.  She took a screwdriver and successfully knocked the tubing (cassette) out without causing damage to the pump. 

Now we were waiting for the chemo drug and a new pump.  Amazingly, we got the chemo and new pump at about 8:15.  The nurse hooked him up to the new bag of chemo, inserted it into the bag (looks like a fanny pack) and started the pump.  Within a few minutes the pump started beeping.  She kept messing with it. It said that there was a problem with the tubing.  After examining it, she thought the problem was because of a kink.  So she fixed the kink and restarted the pump.  Within a couple of minutes the beeping started again.  She looked at it again and it had the same message.  She tried the same approach again and the pump started working again.  Then after a couple of minutes the beeping started again...

After looking at the IV bag, we figured that it must be because the attachment on the chemo bag was too large for this kind of holding bag (fanny pack).  It appeared to get kinked in the bag.  The previous IV bag had a lot smaller attachment and a shorter length of tubing.  So, the nurse took some scissors and cut the IV bag and pump out of the holding bag.  She had to cut it out because we couldn't get it out any other way without totally disconnecting Paul from the IV.  So, Paul had to say good-bye to his nice small bag to carry around his IV bag.

We placed the IV bag and pump in a big back pack that we had used for Paul when he was getting his TPN.  Ironically, within a few minutes the pump started to beep!  The nurse was very frustrated at this point, so she took the IV bag out of this pump and put it back in the old pump.  It worked just fine in the old pump.  The only problem is that you have to use a screwdriver to get the bag out of the pump.  We will worry about that next Monday. 

Anyway, by the time we were done it was 9:00.  The nurse had been at our house for two and a half hours just to change out a chemo bag! 

Paul is struggling to keep on weight.  Most foods get stuck in his throat.  We talked to his oncologist and gastroenterologist on Tuesday about the situation.  The game plan now is to bump his next chemo round back by a week and attempt to get his esophagus scoped (and dilated if needed).  He will have his blood tested on Feb. 21st.  If his blood looks acceptable, they will do the endoscopy on Feb. 22nd.  He will start his second round of chemo on Feb. 27th. 

Paul will finish his first round of chemotherapy on Feb. 13th.  He is still on chemo 24/7.  It will be nice to have a two week break without any chemo (normally it will only be a week).

Paul is very tired!  He got his B12 shot yesterday so maybe that will help a little...  He gets some nausea, but for the most part can keep it under control with his meds.  We put some peppermint oil on his wrist for him to smell and it really helps with the nausea!

Paul is still walking daily and trying to remain positive.  We know that things could always be worse!

This is NOT a picture of Paul's bags for carrying his IV, but his look similar.  I think his larger bag is actually a little bigger than the one shown here.  He enjoyed carrying the smaller one.  The plan is to make sure he gets a new small one again with the next round of chemo.

This is the kind of pump Paul uses on his IV bag.

Saturday, February 4, 2012

The honeymoon is over...

Chemotherapy is starting to change our lives.  The night that I wrote my last post, Paul had a very bad night.  The chemo is wreaking havoc on his GI tract.  No, he is not puking,  let's just say that his intestines are not very happy at the moment. I finally had to call the on-call oncologist last night to get permission to give him some additional meds to stop his bowels.  The doctor told me it is imperative to get things under control, so that he doesn't get dehydrated (didn't tell me anything I didn't already know).  Evidently, this can be a big problem with chemotherapy.

Paul's esophagus is NOT happy either.  He is not able to eat very many things without them getting stuck...thus, he has a whole lot of "gacking" going on.  In addition, nothing really tastes very good either. I bought him a banana cream pie from Marie Calendars yesterday.  He was able to eat some (without "gacking") and said it tasted really good.

Fortunately, Paul can still get liquids in, but he is so sick of liquids (including shakes and smoothies)!  He is losing weight rapidly at the moment.  Unfortunately, he is going to have to eat more smoothies...that is the only way I can see to keep his weight more stable.  Even at that, he said it is getting harder not to "gack" on smoothies.  The frustration is starting to set in.  He so desperately wants to eat "real" food, but I think he would be happy if he could get his smoothies down smoothly (no pun intended).  I guess we'll be trying some more pie today!

Life is about opposition.  You have to experience the bad to understand and appreciate the good.  That is the journey we are on now.  We have good days, but we also have the bad.  I would love to say that we always feel strong, optimistic, and full of gratitude, but that is not always the case.  Sometimes, I just want to scream and yell stop!  Obviously, Paul feels this...I am sure a lot more so than I do.  He is the one suffering...  It is through suffering that we learn the most...

We are going to be calling the doctor on Monday to see if we can get him in to have his esophagus dilated.  His surgeon said that he has had enough time to heal, but we don't know what they will do while he is on chemotherapy.  We need to do something or he will most likely be going back on TPN.

Thursday, February 2, 2012

Just a quick update on Paul...

We are now on day four after the initial chemotherapy...Paul still has one chemotherapy drug (5-FU) running 24/7.  So far, he is tolerating it pretty well.  He is not nauseated or vomiting.  Mind you, they have him on some anti-nausea meds.  He has a few mild symptoms (dizziness, red face), but mostly he is just VERY tired. 

Paul is out for one of his daily walks right now.  He enjoys getting out and walking the dog.  He is so amazing!  I love him more than words can say!