Three Long Days

We are finished with our three long days of appointments at CTCA.  We're glad all that's over so we can get back to a more relaxing schedule.

Day 1 included the CT Scan.

Day 2 was the day I was most anxious about because we met with Rudy's lead doctor, Dr. Thompson.  I wrote a short post on Facebook about that yesterday while we were in the infusion room getting two bags of platelets.  Here's what I wrote in case you missed it -

Here's a fast update on today's appointments. The cancer has grown. That was not really a big surprise. We are stopping chemo and getting on immunotherapy. Nivolumab Is an immunotherapy drug that was just FDA approved 10 days ago. It has shown good results and CTCA is very familiar with it from participating in the trials.
Rudy will finish up radiation, work to get his platelets built up and start immunotherapy in early April. That's exactly what we were hoping for so that was our first smile. With immunotherapy, almost all supplements were taken off the list. Only two remain. That was our second smile. Rudy is so tired of pills.When activity was discussed, Anya, the naturopath, made it perfectly clear that if he felt like cutting grass, he certainly could. He can do most anything he feels like doing. That was our third smile.
Rudy's platelets are low so he's getting a transfusion. That should help his energy a little. As for the hack attacks and mucus, there's not a lot to be done, but pineapple and papaya both contain an enzyme that helps. Seltzer water or sparkling water can also help. We can also add the sparkling water to the Ensure drinks he likes best. That should make them a little less syrupy.

We didn't get home last night til after 9pm.  We were wiped out.  Even so, I was relieved.  Dr. Thompson is wonderful.  I can't figure it out exactly, but she has a calming presence when she enters the room and you just feel cared for.

Today, we headed back out for a full day, but nothing as long as yesterday.  We met with 3 doctors today.

The first was Dr. Hyde, a radiologist.  The most interesting thing from that appointment was the news that radiation helps immunotherapy.  The radiation makes it easier for your immune system to target the cancer cells.

The next meeting was with the pulmonary doctor, Dr Parks.  He showed us Rudy's lung scan and explained it bit by bit.  He also gave Rudy an inhaler that will work on the mucus issue.  He's taken his first dose and so far is liking the change.

The third doctor was Dr. Boomsaad, the pain management doctor.  He told Rudy how to wean off the pain meds when he's ready.   We hope he can do that soon.  The doctor thought Rudy might want to wait til after radiation was over, but he's leaving it up to Rudy.  And of course, if he starts weaning off and finds he still needs it, he can just go back to 3x a day.    It's the lowest dose possible, but it's still pretty mood altering.  It definitely eliminates the pain, but at times, it makes Rudy agitated, irritable, and unable unwilling to censor his displeasure.  Thankfully, it's not all the time.  He's been happy as can be for the last couple of hours.  Earlier today, especially while talking to the pain department nurse, he "demonstrated" exactly how easily he could become agitated.  It wasn't all that bad, but when she writes her notes on that meeting, I'm sure exclamation marks will be included.  :-D   Warning: If you happen to call while he's still on that medication, don't take it personally if he acts up.

I've been wearing my hat like this alot.

Things can change on a dime, so I'm reluctant to say this, but...  tonight he seems to be feeling good.  He's very tired - he didn't sleep much at all last night, but still he's perky and relaxed and improved.  Must be those platelets he got yesterday!

Nervous as a CAT SCAN

I'm getting a little nervous about our appointments this week.  Rudy has a cat scan one day, then the next two days, he'll see four different doctors - his oncologist, his radiologist, his pulmonary doctor and his pain management doctor.  The most important meeting will be with his oncologist, Dr. Thompson.

Dr. Thompson will tell us what she thinks after seeing the results of the scan.  I'm praying for good news, but truthfully, I don't even know what exactly to hope for.  If his scan shows improvement, that's good, but it might keep him from going into the immunotherapy program. (I don't know that for sure.)  On the other hand, if the scan doesn't show improvement, then that means Rudy is getting worse.  I couldn't possibly wish for that, right?  But is that what we have to have in order to get into the immunotherapy program?  And don't even get me started about the worry of somehow missing out on that program altogether!  What if he can't get in?  What if it's closed?

With every big appointment we've had on this journey, I've tried to have an upbeat attitude.  I've worked hard to squash down fears and let positive thinking rule.  Almost every time, I've had the rug pulled out from under me.  My new strategy is avoidance.  I try not to think about it.  Nothing I think will change the outcome.  I haven't been able to anticipate most of the things that have happened.  It seems something crazy and unanticipated is always waiting around the corner.  I've come to terms with the fact that, in this situation, I have very little control. We're being swept off by a tidal wave and I have no idea where we'll end up.  By the way, I've referred to me through this paragraph because Rudy has acted incredibly strong.  If he's worried, he's doing a great job of hiding it.

We could really use lots of prayers.  Please pray for a good outcome, whatever that is.  We really could use some HAPPY!  I don't want us to come away from our appointments scared or disappointed, or worse, in shock.  We've had enough of all of that.

Now, I'll quit thinking about it and switch to happier topics.

Our sweet friends, Susan and Rick Holcombe gave us a bucket of fun!  Just look at all the fun things they packed in that bucket.  There's certainly plenty there to distract us!

Hack Hack Hack update - Claritin to the rescue.  Rudy's hacking and gurgling issues were way beyond acceptable. I used to have horrible allergies and many bad winters with bronchitis and I've never seen anything like this.   I have been particularly concerned about how he'd be able to get through the 3 long days of appointments this week.  We decided to try out the Claritin today.  He usually gets that around chemo time, so it should be just fine.  He only took it 3 or 4 hours ago, so I'm not ready to declare it a success, but he sure has improved so far!  Of course, we'll discuss it more with our doctor this week to see if that's the best thing to do.

Hack Attacks

Pardon this post about a very un-pretty topic.  Apparently, Rudy's chemo produces excess phlegm.  That is a serious understatement.  It's annoying throughout the day, but there are certain times when it's really REALLY bad.  When Rudy first gets up, he hacks for ages.  Riding seems to bring on hacking, too.  The ride over to CTCA and back seems to jostle his lungs pretty good and he hacks like crazy for ages after we get home.

There are other things that bring on hacking attacks as well.  He had been looking forward to cutting the grass. He thought it would be nice to do something other than sit in his recliner or at his computer.  We had some nice weather this week.  He got on the mower for a short time.  Big mistake.  Hack hack hack.

He wanted to do this so badly.

He may try it again one day with a mask.  I have very mixed emotions about him mowing. On the one hand, breathing pollen has got to be a bad idea. I want to insist he not do it.  On the other hand, he is really sad at how little he is able to do.  That's wearing him down.  Way down.  He wants to do something useful and he's not into doing dishes or cooking.  He wants to do some of the guy-things he's always done.  I'm not sure if that's in the cards right now.    Maybe after pollen season???

Another breathing issue has to do with neighbors burning.   Our property is surrounded by people who own large plots of land.  They burn their woods regularly to keep down undergrowth.  They also often burn limbs and trash. This week there was a pretty large burn on one side of us.  Rudy had radiation appointments, so there was no avoiding going outside twice - to get in and out of the car.  Our house was enveloped by smoke.  For some reason, when neighbors burn on any side of us, the smoke often settles on our property.  It's crazy.  Rudy's still paying for what that did to his breathing.

The wind begins to shift and the smoke started making its way towards the house.
We had to leave soon after this photo was taken and by that time,
it was so smokey around our house, you could hardly see.  

In the neighbor's defense, they have no idea that Rudy is sick.  I keep hoping to run into them, but it just hasn't happened.  I know they'd be very upset about causing any distress if they knew.

As for today... thankfully, the rain has cleaned the air.  It's not warm or pretty, but Rudy was able to go to the car and back without a hack attack.