Wednesday, July 29, 2015

Chemo #4 with Dad!

Brett's Grandma Debbie (my step-mom) came down and was able to come with to the lab and doctor's visits.

The nurse visit went great!  (Dr. Fenske was doing a spinal tap - so he couldn't come in for the appointment - but it was okay.)   She was pretty pleased that Brett had gained weight!  He weighs 169 now (up from 145).  Brett is about 6'1".  Great news!

Once he was all set up at chemo - Debbie and I took off and went to see our entries get judged (we dropped them off at 8am in the morning).  We called and texted Eric and we actually got home about the same time they did!

A little background:  Debbie and I have entered into the baking/cooking competitions to the Wisconsin State Fair every year for the past 12 or so years together.  Today is the same day as the first day of judging.  We both entered MUCH less than years' past.  Brett thought it was important to still do our judging - and didn't want us to skip this year.  So we did!  Phoenix (my nephew) also entered into a couple of contests.  He took 3rd place in Kid's SPAM!

Eric took the day off of work so he could be at chemo with Brett.  I wish we got a picture of the two of them together!!

All is looking good.  And we are set to get a PET and CT scan to see how things are doing... that will be August 7th - and we'll get the results at his next doc/chemo day (August 14th).  So stay tuned for that!

Days after Chemo - Complications

Brett did okay but went right to bed.  He slept a lot over the next couple of days - but then he developed a swollen tongue and raw throat on Saturday and Sunday.  He called the nurse (in the middle of the night) and it's somewhat normal.  It may get worse with upcoming treatments.  They called in a prescription mouth wash to help in the future.  Luckily it was gone by Monday and he was eating like crazy!

Tuesday, July 28, 2015

Brett and his 3 White Blood Cells...

Blood tests online are a weird thing.  If you don't have much medical background - they have no context.  I have some idea (having worked on medical manuscripts for bone marrow transplant research and hematology in my past life), but still not totally understanding.  The good thing is we have a great doctor and nurses - and we also have our friend, Google.

Anyway - we thought we'd share just a few of Brett's blood test results (from 8/15).  The good thing, is that it gives the normal range.  But they don't tell you if you should panic or not.  Our doctor says not to panic... so we'll listen to him. haha

We know that Brett doesn't literally have 3 (or 2.5) white blood cells.. but it makes us giggle everytime we say it.  It's more like 2,500 per microliter (when he should have at least 4,500).

Click on this to see the whole thing.
Click on this to see the whole thing.

Use your hand sanitizer, my friends!  Brett can't handle any extra germs,  His 3 white blood cells have a lot to do and fighting infection isn't one of them right now.  haha

Monday, July 27, 2015

Hair today... Gone tomorrow!

It's time... Brett was ready to finally do the big shave!   He gathered a few friends and went over to someone's house and they had a little shave party!

This is Brett's friend who he went to school with. She became a stylist and has been cutting Brett's hair ever since.  Of course she should do the honors!  (By the way - what 20-year-old guy wouldn't want his hair cut by her?  She's adorable.)

They were having fun - but Brett wanted to keep the "old man" look.  He reminded me of my Dad!  Luckily - his friends convinced him to keep going....
So tough... haha

All done!  And cheesy grin to go with it!

My niece said he looks like Calliou (from a kids' PBS show).  He does!
My friends Donna and Lisa L. both thought he looked like Ron Howard.  I can see that!

Wednesday, July 15, 2015

Chemo #3! (9 more to go)

It's Chemo Day again!

We packed up and we were off!  First, of course, is the lab.  It's the first time they would be putting the catheter into the chest, rather than the arm.

Brett went in and got a little light-headed.  They had to go in through his new incision (OW!) and once that was done, he could taste and smell the saline.  I think it caught him off-guard.

He sat for a bit and we went up to the Grace Clinic to see the doctor/nurse practitioner.  The nurse ordered a cream/lidocaine he can put on prior to chemo in the future to numb that area.  But he was much better already.

In checking his neck - they noticed that many of his tumors had come WAY down already.  He had a 6-7cm tumor in his neck (he actually has hundreds of tumors - but these were the most easily measurable.  It had already shrunk to less than about 2cm.  Very good news!

Then we were off to chemo on the 3rd Floor.  It was quiet - but chemo his him harder and faster than before.  He was already glassy-eyed by the time he was on his last drug.  I was a little concerned - and emotional later because there isn't much I can do for him.

Showing off the catheter that was in his new port!

Early on in the treatment and he's on his laptop. :)

Brett said... "Hmm... well, I have CANCER?!"  Can you think of a stupider (is that a word?) question for a cancer patient?

The doctor later told us that all the patients that are answering it have cancer - so it should be otherwise feeling.... But we made him laugh! :)  hahaha
He came home and went right to bed.  He was OUT cold and that's okay.  Sleep is good - well, until I have to wake him up so he can eat and drink!

Monday, July 13, 2015

Medi-Port Time!

Today was the day!  Brett is having surgery to get a mediport (or "power port" put into his chest.

For those fortunate enough to NOT know what this is (or may know - but not really know what's involved), this is like a little "bladder" made of metal and plastic that is put into the veins in the neck/chest so the IV chemotherapy drugs - and drawing blood - can be done without sticking him in the arms all the time.

They make a tiny incision in his neck (jugular vein) and bigger one in his chest to feed in the wires/leads, and place the unit.  It also gives them medicine a bigger vein to enter - which is much easier on the body.  The tiny veins in the arms can only handle so much pressure and such.  The needles still go through his skin - but then right into the port underneath.  One lead goes through his jugular and one into his the vein leading to his heart (or something like that... I hope the nurses that read this realize I am going from memory and don't always know what I'm talking about, but I'm close!)

Brett got the silver one.  Lower profile and some cool features for getting scans/contrast dye, I guess? I was hoping the for the purple one (of course), which is funny because nobody sees it.  haha.
They let us look at sample ports and let us know what's involved.

"Really? Another picture?"

Rockin' the Gown!

Playing Dead.  Nice one, Brett... Sheesh!  haha

Heading back to get the procedure.  Peace out!
I wonder if he was already bald if they would make
him wear the head thing?  hmm..
All went well!  He goes home with the new silver friend in his chest.  (And we go to get something to eat!  We're both starving!  He couldn't eat after midnight... so for some reason, I didn't either and now it's afternoon.)   One day after his steri-strips come off, we'll take pictures of his cool scars for you all! :)

Chemo #3 is Wednesday to give this whole thing a test-drive!

Tuesday, July 7, 2015

Going... Going...

It's official.  Brett's hair is coming out at an alarming rate.  For some reason - it's made me emotional?  I know it's just hair - and it will grow back, but it made me realize how real this whole thing is.  He still looks great - and I don't think it's really noticeable yet, but one day - he will decide to just have a shave party!  More on that later, I'm sure! :)

It sort of just looks like he got a major haircut he didn't ask for.  haha!  He's afraid to comb it, or even run his hand through his hair, because SO much comes out at one time.

Saturday, July 4, 2015

Chemo #2 - the new Normal!

Every other Wednesday until Thanksgiving (if all goes well) our routine is Lab Draw, Doctor Visit and then Chemotherapy. (Details on that below.)

Oh - and the packing!  We pack laptops, a lunch, magazines, newspaper.  The chemo rooms also have TV, but we don't seem to turn it on.  I think it would be hard to concentrate when the nurses are coming in and out and such.

The "off" week - the days after the first chemo - and before this chemo:  Brett was feeling great!  Eating a lot - and maybe even more than normal.  His weight went backup to 154!  (Still very thin - but better than 145!).

So - it's Chemo #2 - and Brett was really feeling great when we went in for his 2nd dose of chemotherapy!  We got a great room (it was a double-room - so I got a recliner also!).

Brett did well.  He is still getting chemo in his arm, but soon will be going in for day surgery to get his port!  He's pretty excited they won't be poking his arms (as much) anymore, but a little nervous they are going to be inserting this in his chest and making a (tiny) cut into his jugular vein!

Notice his new shirt!  He's been craving frozen treats lately - and we recently went to the Mall (during a very non-busy time.. there was barely anyone there) and he picked this popsicle shirt from H&M!  Isn't it "cool"?!  (*groan* at the pun - it's okay).

During the chemo - during one of the drugs, they give him a frozen treat or ice chips.  It slows the blood flow in his mouth and (hopefully) makes it so he doesn't get (as many) mouth sores.

We thought it was funny that he opted for a cup of lime sherbet instead of a popsicle! And he's wearing his popsicle shirt!  The nurse thought that was funny, too.

What do we do on "Chemo Day"?
Chemo Day starts at the Lab on the 2nd Floor, where they put in his catheter (to get the chemo later) and take vials of blood to test for blood counts, liver function and kidney function.  

Then we go up to Grace Clinic on the 4th floor and see the Nurse practitioner, the Research Coordinator and the Doctor.  They check his tumors - and blood tests - and they ask us questions (and we ask them questions).  

Then it's to the 3rd Floor to the Day Clinic - and onto the Translational Research Unit to get Chemo.  Chemo is usually 4-5 hours.  He gets 3 anti-nausea drugs/steroids - followed by 4 chemo drugs (given separately).  It should get faster once he gets his port.

The Nurse Practitioner (who we see first) let us know that Brett's blood counts are really low.  He needs to wear a mask anytime he's in public now (and likely throughout the rest of treatment).  

The rest of us can handle germs and bacteria without even thinking about it - but Brett shouldn't take chances or it's a 3-day hospital stay minimum.

What happens after Chemo Day?
The days after chemo - Brett sleeps.  He went right to bed after this treatment and slept most of the next 4 days.  He has no interest in eating or drinking - so I have to wake him up and get him to eat and drink.  He started to perk up on Sunday - and by Monday and Tuesday was feeling more normal. The following week he eats like CRAZY!

Support!  Wow!!  The letters, cards, meals and just overall kind words and hugs are so sustaining.  We are grateful to everyone for everything!!

Brett (and us) decided to make this public because we think it's sort of a "all hands on deck" approach.  So many know and care - and why not share the struggles and achievements with everyone?  We feel it may help others going through things.

Our hearts are full - and we have nothing but gratitude for the Lord, family and friends.  No life is without trials - it's how you handle them that is important -- and how we come together to help each other.  Don't hold back hugs or words to those you appreciate!