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.

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.

Immunotherapy

Just like many with lung cancer, we are hoping Rudy can try immunotherapy soon.   Most of these are still in trial phases.

So, what is immune therapy?  The treatment directs your immune system to fight cancer cells.  Typically, your immune system doesn't attack tumors because the cancer cells are cells from your own body.  Your immune system isn't supposed to attack your own body.  This article is one of the best I've seen for explaining it. 

This article mentions some specific immune therapies showing good results with more than 20% of patients were alive at two years

NEW DRUG APPROVED
Three days ago, a new drug was approved by the Food and Drug Administration.  It's been found to be helpful to those fighting non-small cell lung cancer.  It's called Opdivo.  It's a type of immunotherapy.  I have no idea if this is something that will be in Rudy's future.  It's not something that I remember being mentioned.  I just happened on this news this morning while browsing online.

 This article explains how Opdivo works pretty well.  Opdivo is put out by Bristol Myers.

Here's an article with a slightly more personal bent.  One horrid little factoid from this article - "But another big question about these drugs is how much they cost: more than $120,000 for each round. That has drawn some intense criticism."  Criticism?  How about fainting dead away from shock?  OMG.  How much is this going to cost?  When a patient is in a trial, are they having to pay?  Even if we had to pay half or even a fourth, that would still be insane.  AND how many rounds are given?  I've always been fascinated with tiny house living.  A round or two of this stuff and we'd be lucky to afford a shed.

This article has an even more personal take on immunotherapy, but it centers around a different type of cancer.

Actually, the personal details are the ones I've been trying to find.  Most of the articles seem to center around impersonal studies and statistics.  I want to know what it will be like for Rudy.  I have yet to find that information.  If Rudy does go through this therapy, I will definitely write about it.  The doctors can worry about the statistics and which therapy would be best.  A patient wants to know what is involved - How often are treatments?  What are the side affects?  Is it like chemo in that you truly have no life while you are being treated?  What is the cost?

MONEY MONEY MONEY
Interestingly, in another article, I read that "Sanford Bernstein analyst Tim Anderson sees Opdivo sales reaching $4.6 billion in 2020." Also, from the same article, "Bristol-Myers shares were up $4.71 at $58.87 on the New York Stock Exchange."  Cancer certainly seems to be good for the economy.  :-(  If you play the stock market, you may want to buy some Bristol-Myers stock.  Remember me when you are rolling in the dough.

In fact, there are a number of big companies in line to make big bucks from new cancer therapies.  Finding therapies for lung cancer could be extremely lucrative. Lung is the leading cause of cancer deaths globally, with about 1.5 million each year.  Lung cancer killed 1.6 million people globally in 2012—more than liver and stomach cancers, the next two most fatal cancers, combined.  Non-small-cell lung cancer accounts for about 85 percent of lung cancer cases, so finding drugs for that type is probably a top priority.


HOW IS RUDY TODAY?
He's been incredibly tired the last few days.  Too weak and tired to watch TV.  So tired that walking from our bedroom to the living room took all the strength he could muster.  These were the worst of the bad chemo days he's had in terms of fatigue. We know firsthand it could be worse. He's not nauseas and he doesn't have unbearable tumor-on-nerve pain and we are thankful for that.

Yesterday, he began to show signs of improvement.  He was able to have a conversation.  He needed to change positions so he sat at his desk and played a game of solitaire.  If this is a typical chemo cycle, he should feel a tiny bit better each day... and then we start the cycle again.  Today there's not much improvement.  We have a late radiation appointment - 6:50pm.  We'll be leaving in a few minutes and he's really dreading having to move.

He is feeling a bit of back pain caused from sitting and lying down for 4+ months.  It's very very uncomfortable, but not excruciating like the tumor-on-nerve pain.  He asks for back massages frequently and they bring him some relief.  Today I bought several other topical pain products.  He tried the Icy Hot Smart Relief Tens Therapy just a little while ago.  It definitely gave a nice sensation and so far he likes it.  We haven't used it enough to declare it a success.

His appetite has increased just a tad.  Ensure is our best friend.  His current favorite is Ensure Active in Peach.  He also likes the Berry flavor.  I've started drinking them as well - mostly the ones he doesn't care for.  That's probably a good idea because I know I'm not eating like I should.  One night my supper was gluten free crackers.  That's disgusting and not at all nutritious, but it was the best I could do at the time.  

Yesterday, the weather was nice and we sat outside twice.  That was great.  Neither of us have spent much time outside during the last four months.  I hope he can get his energy up quickly.

Pain and Nausea at Bay

The last few days have been crazy, but all the crises are under control (for now).  Rudy dealt with unrelenting vomiting and nausea.  He dealt with swallowing being a challenge - it felt like everything was sticking in his throat.  Pills were the worst.  Finally, he dealt with pain that became so unbearable he was unable to function.

Humor gets me through!  I've been chanting the real serenity prayer for days.  I came across this one this morning.  It gave me a good chuckle. 

I *think* we're fine now.  I slept and am able to think and function again.  Rudy is currently not nauseous or in pain.    He has better, longer acting meds for both issues and right now they are working like a charm.  His esophagus issue seems to be getting better.  He has an appointment scheduled to get that checked just in case.  If there is a problem, there are things they can do.

The pain meds are some that are fairly addictive, but it's hoped that he won't need them long - maybe a week at most????  Possibly less.   We hope the chemo (HE DID HAVE CHEMO YESTERDAY!!! :-D ) and targeted radiation will knock the tumor down fast and get it off that nerve.  From what I've seen so far, the pain meds don't seem to make him too loopy.  He seems like himself, just maybe a tad more cheerful.  The cheerful might be more of a result of the lack of pain and nausea.  That's certainly reason enough!  I hope the cheerful effect lasts a long time.

This was me yesterday. 

We'll meet with pain management again next week.  They may even be able to  go in and deaden the nerve to the annoying tumor so that even if it does expand again, it won't make him so miserable.

Yesterday, Terri talked a little more about the immunotherapy.   Rudy will have another scan in 3 weeks to see how he's responding to the current chemo - the Carboplatin-Gemzar regimen.  If it's not a big success, then we'll look at switching to immunotherapy.  That treatment is in the last phases of trial and it's been amazingly successful on many types of cancer.  Rudy's type of cancer is one it's particularly good with.

Maybe immunotherapy will replace chemo one day.

Rudy doesn't seem to be cut out for chemo, so we're really hoping he's being led to immunotherapy for a reason.  We'd love to be one of their success stories!

Lymph Nodes are Garbage Disposals!

Today (Friday Jan 23) we met with Dr. Parks, the pulmonologist.  He discussed the scans a bit further.  He's the one who went over our original scans in such detail when we first came to CTCA.  We really like him.  He's a very serious, forthright, kind man.  Also, he wears the same size shoe as Rudy - a size 15.  Overall, Dr. Parks seemed at ease with the scan results.  

LYMPH NODES

Dr. Parks explained a bit more about the lymph node activity and the lymphatic system in general.  

The lymph nodes are the body's garbage disposals.  They help the body get rid of junk.  When lymph glands show up on a scan as swollen, it doesn't necessarily mean it's bad.  There are some good reasons for them to be swollen as well.  Only a biopsy of the lymph node would tell if it's cancer, but there's no call to start biopsying lymph nodes on Rudy.  

Getting rid of the garbage!

We're hoping Rudy's swollen lymph nodes are just extra plump because they are working overtime disposing of cancer cells.  

IMMUNOTHERAPY

We also talked with Dr. Parks a little about immunotherapy.  He explained that it's a fairly new therapy, but would probably end up being the preferred way to treat cancer.  

He said that Rudy would be an ideal candidate for it.  The treatment stimulates the patient's own immune system to fight the cancer.  Most patients whose cancers have progressed to Stage 4 and have undergone a number of chemos are in pretty bad shape and it's hard for their immune systems to put up much of a fight.  Rudy, however, is in great shape and this treatment could be even more promising for him.  

CHIROPRACTOR

Rudy had his first visit with the chiro. today.  He came out smiling.  He'll be going back 3x a week for the next 2 weeks.  Honestly, between the chiropractor, the massage therapist, the acupuncturist, the nutritionist, the naturopath and all of the pampering he gets, you'd think he was at a spa.  I love that they are making him feel so great.  

Special note to Paige - Rudy said to tell Joe he really needs to take advantage of these extras.  They truly are working!!!!!  None are painful or even uncomfortable - you come out feeling better than when you walked in. 

CHEMO

If Thursday's chemo is anything like the others, tomorrow and  Sunday will be his super tired days. We'll probably lay low this weekend.  He's feeling pretty darned good today.  This chemo includes carboplatin which he's been taking every 3 weeks.  I'm assuming he had the full dose.  He also had a 1 week dose of Gemsar.  He goes back next week for another.  I don't think he'll have carboplatin for that one.  The only reason for mentioning this, is that since part of his chemo is different and it's a one week dose, we really aren't sure what his side effects will be.  

Will he feel gross with this new chemo combination?  Will he feel as tired as he did after the last one?  Will he ache?  Will his blood counts go down?  Who knows.  We are learning to live on the fly.  Planning anything while fighting cancer is an exercise in futility.