NED!!!!

No Evidence of Disease!  "NED" is our new best friend - as our former bishop, Corey Grip, said!

PET and CT scans were Monday and Brett did well.  He had a slight reaction (despite the steroids and Benedryl!) but was okay to go home.

That night we made homemade pizza and watched Christmas specials that we had recorded on the DVR.  Anxious for the next morning!  Unfortunately - Eric had to go to Nebraska for work, but he is full of Faith and said.. "It's all going to be okay, I'm not worried."

Brett was up the whole night (his sleep schedule is way off - and he's still "flipped") so I'm sure that didn't help!

Carrie (my sister - and Brett's aunt), Jenni (my sister's youngest), Brett and I headed to the doctor!

First stop - labs.  We went in for Brett to get his blood drawn.  It was a LONG wait that day.  Unfortunately, the lab was busy.  When I say unfortunately - I mean that we don't like to see the Cancer Center busy!

Then up to the Grace Clinic for our appointment.  Again - BUSY!  And while we were waiting there was a Code 4 in the clinic.  There is a slim window between the waiting area and the clinic - and there were a couple folks running around and eventually a gurney went in.  Apparently the patient was fine - but being admitted to the hospital.  I'm not sure what Code "4" is at Froedtert - but I'm sure it's serious.

We finally get into an exam room.  While we were waiting, we decided we should snap pictures (of course).

Jenni & Aunt Carrie came down to hear the news!

"Brett.. pose as if you got bad news..."

"Brett - pose as if you got great news!"

Well - enough goofing around, because Dr. Fenske came in (we didn't even get the nurse first!!!!!) and as he opened the door and was walking in he said:

"Well your PET scan was negative.  No evidence of disease."

Then he went onto the computer to show us the results.

This is a clean scan!!!  I guess the heart is either bright or not - that's just a strange nature of the heart in a PET scan.  Dr. Fenske joked.. maybe he wasn't feeling very loving on Monday.  hahaha

The comparisons.  

L to R:
December 14th (CLEAN!)
August 7th (After 4 treatments of chemotherapy)
June 2nd (before any treatment)

THE BEST LYMPHOMA DOCTOR IN THE WORLD
also known as Dr. Tim Fenske

Brett called Dad immediately after we left (we had already texted him the scan picture and let him know right from the exam room).  We had to make a few other calls before putting it on Facebook, but we wanted to shout from the rooftops!!

Now what?

Apparently - there is about a 10% chance that there will be a recurrence of this disease.  The chemotherapy (while aggressive) is pretty complete and if the disease responded to it and there is a clean scan, then there isn't a great need for future scans.  Should he get a recurrence (heaven-forbid!) then he will have symptoms.  He should do self-checks in his neck and arms for tumors - just like any of us should be doing.  But overall - he is considered in remission!  He goes back in 3 months for labs and another doctor visit.  

Brett will be going in on December 30th for surgery to remove his port!

Returning to his Mission?

Brett talked to Dr. Fenske about returning to missionary service - and we had the letter from Salt Lake with us outlining some of the basics about returning.  We highlighted what the doctor would be interested in:  Letter from oncologist, healthy immune system, able to work 12-15 hour days and walk up to 5 miles (or ride bike).  He seemed to think that was no problem as soon as Brett was up to it.

No Rush...

For now... we let Brett recuperate and get his energy back.. and grow hair and eyebrows again! ☺ He's excited about "normal" life... being able to go to a restaurant (or even a buffet!)... the movies during a normal time (and not bringing a container of Clorox wipes)... or being able to go swimming or to the gym... or even eating lettuce or fresh fruit/strawberries (a taboo).

THANKFUL!

Again - I am reminded we are very lucky.... the amount of support and prayers has been overwhelming.  We had decided to make this journey public because it was "all hands on deck" - and it was a gamble.  We are actually pretty private people - but this journey would have been unimaginable alone.  To hear the encouraging words, to hear others struggles and challenges with cancer, to feel the prayers and requests on our behalf and to receive cards and packages with sweet and thoughtful sentiments and useful items (!) has been nothing short of absolutely amazing.

As for this family - we are offering prayers and thanksgiving and looking forward to a very Merry Christmas!  

Merry Christmas & Happy Holidays to everyone!  

More to come as we go through this journey!

Scanxiety!

We have been in a great state of bliss... but there is an undercurrent of "what if?"...

What if... there is a stubborn tumor?

What if... there are new tumors?

What if... there is no cancer?

What if... We have to go to more chemo?

What if... He needs a stem-cell transplant?

What if... He needs radiation?

And then we answer those questions...

.... We'll take care of it.  Whatever comes our way - we'll handle it, I'm sure!  But we can't wait to KNOW what we are dealing with!

Brett is able to start shaking hands and giving hugs.  But we're cautiously optimistic... we don't want to get too used to being "normal" if there is more to come.  Some have said it's sort of a PTSD (post-traumatic stress).  

He's doing great.  Brett has been the easiest patient in the world.  So easy-going and full of faith.  I don't think he has any worries, really.  Or just handles them better than about anyone I know!  

He's s eating and tasting everything again.  I made spaghetti and he said, "What did you do differently?  Because this is AMAZING!"  (It was my same spaghetti...)  He's not 100%, but he's getting the lining of his mouth - and tastebuds - back!   He still has a lot of fatigue - and gets wiped out pretty easily, but he's recovering really well and more active every day!  

PET and CT scans are Monday, December 14th.  He has to take 3 doses of Prednisone (steroid) and perscription Benedryl prior to the tests because he breaks out in hives from the contrast (this is a new thing - he hasn't in the past, but did the last time.)

Tuesday, December 15th he goes for labs to check on his blood counts and then we meet with Dr. Fenske (oncologist) to find out all the results!

LAST CHEMO (Hopefully)!!!

The day is here!

When Brett was told he would undergo chemotherapy every other Wednesday for 12 treatments (this was in June) - we counted forward and realized he would finish in November.  It seemed so far away!  We prayed that he would not get an infection so that no treatments were delayed... because that means by Thanksgiving, he would be able to eat again and enjoy the day!

Brett was blessed - well, besides cancer of course! No delayed treatments.  No infections.  2 small colds (which were a little bigger cold for him).  No fevers!  No hospital stays, transfusions or emergency room visits!

NOTE:  While I know our prayers are answered in the way I had hoped... I hesitate to use these words. "Our prayers were answered" doesn't always mean things go well... because there are so many who are going through the devastating effects of cancer and their prayers are answered also, but in different ways and for different reasons.  I don't pretend to think that Brett is more favored by God... I just know that our faith has brought us through this with a good attitude and the ability to recognize so many blessings - and miracles - along the way.  We believe that this life will have many trials and tribulations - and our faith gives us the tools to handle it - and perhaps help others in the future, or strengthen our testimonies.  For those that pass on because of this devastating disease, or the effects of chemo, there are many blessing in answers to prayers during those experiences also.  I speak from experience because of my Dad... I believe that my Dad's treatment and journey also was blessed... for us and for him even though he left us too soon.  I know his journey continues on the other side and perhaps his experiences will serve him there? Anyway - just wanted to leave those thoughts with you...

So our insurance nurse case manager called a couple of weeks ago.  She helps us manage the insurance to be sure there aren't any problems (and it must work because so far - so good).  And she said nothing had come across her desk to indicate there were any issues.  She then proceeded to tell me how rare that is... that with this aggressive therapy and with counts remaining low, something usually happens.

When we started the journey - we were told that a fever over 100º means an automatic 3-day stay at the hospital because of being immune suppressed.  I couldn't imagine going 6 months without any problems.... but here we are!!

 

Eric and Scott were with us for his Chemo graduation day.  It was the normal routine... and hard to "celebrate" because we knew Brett wouldn't feel good by the time it was over.

Julie was excited - and put in his orders for his CT and PET scans next month!

At the Day Hospital, we checked in... waited for a few hours as normal...

  

And then... as he was getting his last chemo drug - I pulled out the little sign I made so he could pose for pictures with it.

The nursing staff gave him a little cake (wrapped to take home, of course) and a certificate. We knew we'd be back on Friday for his IV fluids appointment, so I told them it wasn't good-bye yet!

That face he makes... his Grandpa would
have hated it.  hahaha

When he was just about done... and we were starting to pack up, a wave of emotion just hit me out of nowhere.  Relief.  Like we had been holding our breath.  Just overwhelming gratitude for the care he's getting.  For giving me the gift of such a great family.  For giving me the gift of so many caring friends and words of encouragement, cards and gifts to get us through this journey.  Overwhelming... is the only way to describe this week.

On Friday we brought in my state fair blue ribbon pumpkin bread for them to enjoy (2 loaves) and they were so happy!  We were there for just over 2 hours and Judy and Kariann came in and gave him hugs and wanted him to come back once he got his results.  Said he was a great patient... so kind.  Of course, I got emotional.

Getting IV fluids

We left the Day Hospital arm in arm... and he was hungry!  So at 10:30am we got him some Arby's.  After some fluids... and and a sandwich, he was feeling better.

He went to bed.. and I gave a prayer of thanks...  Now we wait until next month to see what is next.  If there are stubborn tumors, he will receive radiation. If he receives the great news of being tumor-free - then he returns in 3 months for another scan, and then he can move forward from that point - whether he returns on his mission, or goes through more treatment.

Those that have had cancer call it "scanxiety" - and it's a perfect word!  We know we aren't out of the woods - but this piece is over.

Chemo #10 and #11

Chemo is actually tougher as it goes forward.  My theory (based on no medical experience) is that there is no cancer - so it's attacking the good stuff.  ☺

Our routine is pretty set now.  First Brett puts gel (a prescription) on his port site which helps numb it - and we cover it with Glad Press-n-Seal (we love that stuff!).  We pack snacks and soda/water (they have some there - but their water doesn't taste that great) in our thermal tote.  Gather up our laptops and magazines/books and then we go to get breakfast out somewhere (IHOP, Perkins, George Webb) so he can get a good bunch of calories in him because we know he won't eat for 2-3 days.

At the Cancer Center - we park in the same spot/area (so we never have to look for the van or wonder what floor we were on).

2nd Floor/Lab:  We check into the Lab by about 8:30-8:40am and it's usually pretty crowded!  It was here that startles the new patients... seeing everyone bald and wearing masks, or in wheelchairs, etc.  And very somber... The staff is amazing and calls in patients to the lab chairs one-by-one.  I don't go back but wait with all of our stuff.  They put the catheter into his port and draw blood for the tests.

What's the name of the
lymph node you took out?
I think it was the super-vena-cava something...

4th Floor/Grace Clinic:  Usually about 9:15-9:30am.  We wait and then when he's called, he gets weighed and then placed into a room.  We typically see a Julie - a Nurse Practitioner that asks Brett the usual questions and we ask crazy questions (what causes this? how big was my biggest tumor? how long before this woulda killed me?... you name it we probably asked).  And then Dr. Fenske comes in (or they are in at the same time) and they ask Brett about fatigue, appetite, go over his blood work, and check him physically for lumps and bumps and listen to his lungs, etc.  They order the chemo drugs based on his weight, etc. and then we check out to make sure any follow-up appointments are scheduled (or other tests, or to return for IV fluids, etc.).

Aunt Lisa came with us for #10!

3rd Floor/Day Hospital (or "Chemo floor").  We usually arrive here about 10-10:30 and they are happy to see him.  He gets a new wrist band and cut off the one he got in the Lab (not sure why?).  We go back to his mini-room/big cubicle type thing and either Kariann or Judy are his nurse for the day.  They start the saline IV and ask him the usual questions (again) and do BP and such.  Then we wait for the chemo drugs to come up!

Anti-nausea cocktail comes first!  This is a small bag of some steroids, etc. I think it's 3 drugs total.  These help with the side affects and it's because of these that Brett doesn't have the affect that has been the case in aggressive chemo in years' past!  He doesn't vomit or have those affects.  He doesn't eat - and might feel queezy, but we'll take it over the alternative.  Medicine is amazing stuff.

Chemo:  Brett's regimin includes 4 drugs, known as ABVD (If you Wiki/Google them, you can read all the horrific side-effects):
•(A)driamycin (also known as Doxorubicin/(H)ydroxydaunorubicin, designated as H in CHOP chemo treatments for those that might be familiar with that).  It's red and comes in a big syringe and she has to administer it with the syringe into his port over a period of 10 minutes.  It's BRIGHT RED and they have to stop and be sure his line his clear.  Infiltration can cause the tissue/vein to die. 
•(B)leomycin is pretty toxic to the lungs.  He gets a teeny bag of this over 30 minutes - very slow drip.  It can cause all sorts of problems, including permanent lung-scarring.  They are cautious about his lungs - and even held off on one of the treatments and didn't give it to him until they got (another) pulmonary function test done to be sure no adverse affects were already taking place.
•(V)inblastine is a common chemo drug for brain, bladder, testicular cancer - and lymphoma. This is the culprit that makes him not want to eat anything.  It's also the one that causes the hair loss... and kills off his white blood cells.  This is administered by bag, but she needs to attend it and check his port/line every so many minutes to be sure there isn't infiltration.
•(D)acarbazine (similar to (P)rocarbazine, designated as P in MOPP and in COPP chemo regimins - usually for non-Hodgkin's lymphoma from what I've read).  Causes fatigue, and of course inhibits cell growth for fast-growing cells (cancer.. but also hair, mouth, etc.)

Brett usually falls asleep, or he becomes glassy-eyed and isn't interested in his iPad/laptop or much of anything.  We sit quietly and wait for the beeps to switch drugs, etc.

The nurse calls in a 2nd nurse to verify his information for every drug... and verify his name and birthdate (for ever drug) and the dosage and administration.  Pretty toxic and I'm glad there is verification for each.

#10!!!  Only 2 left!! 

The chemo nurses and volunteers are all amazing... asking if we want warm blankets (but it's usually pretty warm in those rooms), or something to drink or eat.  The ones that have worked with Brett before always come in and say Hi and ask how things are going.  

Occasionally we see a new person come in - and you can tell they are new... they look scared and don't really know where to go or where the bathrooms are, etc.  It makes me sad to realize that they are beginning their journey.

We're here for #11!  Only 1 left!!!  

Brett didn't like that his eyes were closed
in the pictures... so he opened
them really big.  Dork!

Most of what I see during chemo.  Eric was with
us for this one, too :)

Chemo is always on Wednesday (every other Wednesday)... and the last few times, we come back on Friday for Brett to receive IV fluids.  He doesn't really drink or eat for the 2 days after chemo (and I mean barely a swallow of water to go with his pills each day), so he was getting dehydrated and it was making him take longer to recover.  So Fridays early morning we come back to the Day Hospital to hook him up again for a couple hours to receive fluids.  It really helps and he usually already feels a little bit better.

Getting fluids on Friday after chemo Wednesday.

So that's the routine!  For the days following, Brett doesn't usually leave his room and sleeps a lot.  Very low energy and just hard to watch him feel so bad. 

After this there is ONE MORE LEFT!  We couldn't be happier!!  Brett was diagnosed on May 28th - and his last chemo will be on November 18th (if he doesn't get sick, etc.)  

Rolling along... and seeing the end!

It's been awhile since I posted - but we've been busy with appointments (as usual) plus Scott starting High School and going to his Freshmen football games.

Chemo #8 (September 23rd) and #9 (October 7th) were good!!

 Brett had a pulmonary function test after #7 and it was determined that his lungs still look great and there is no toxicity caused from the Bleomycin!  Good news!  He also had a chest x-ray and that looks good also.  So the treatment continues as normal!

Bleomycin can cause irreversible lung toxicity and cause shortness-of-breath and other breathing problems.  Brett was coughing and giving them concern - so they suspended the Bleomycin for one treatment, but he's back on it since all tests are normal.

We did notice that Brett was having a harder time coming back from chemo.. and it turns out it's more because of dehydration.  So after the last 2 chemo treatments, we returned on the Friday so he could get IV fluids.  It seems to help a lot!  It's another trip to the hospital but so worth it.

Chemo #8:  When counting treatments - the "chemo world" call them cycles.  And Brett has 2 treatments per cycle.  So, for instance, what we would call treatment #8 is actually Cycle 4, Day 1.  Well, with all the numbers - it's easy to lose count of where we're at!  So I had Brett put up the fingers for the number of treatment - we thought #7.  It was actually #8 when I thought about it!  So here are the funny #7 pictures which are actually chemo #8!

Kariann has been Brett's nurse for many of his treatments!

Everyone is SO nice at the Day Hospital!

Chemo #9 (which really WAS #9 - haha) went really well also.  Actually Brett feels SO good the week before chemo, it makes it hard to go.  He stays up crazy hours and goes out with friends every night and eats everything in the house.  It's all in anticipation of not feeling good, I guess.

The IV fluids after #8 was a success - so we went back again after #9.  The rebound was the best ever!  Chemo was on Wednesday (always every other Wednesday).. and he was still pretty icky on Thursday and Friday, but Saturday he started to eat a little and he was really feeling much better on Sunday.  I was gone for the weekend, but left Eric and the boys with all the meat/onions/seasonings in a CrockPot liner in the fridge to make Italian Beef.  So Sunday morning - they just had to put the liner in the CrockPot and then add some water and they were set for later!  Brett actually felt pretty good on Sunday and called me to find out how to know if it was done.  He sounded really really good!  So it's all set for the next 3 treatments to get fluids the Friday after chemo.

Kariann trying to get a "blood return" because with 2 of the chemo drugs - if it infiltrates, the drugs can cause the surrounding tissue to die, so they have to make sure there is a good flow right where it belongs!  It does seem a bit jarring (even now) that things that are so toxic are going into his blood.  

He does have some side effects - but nothing too major, thank goodness.  Light-headedness, fatigue (major and minor), and a couple other things... but so far, so good.

Something that happened when he went into the Day Hospital to get fluids on that Friday was a woman was yelling from her room, "I CAN'T TAKE IT ANYMORE!" and she was crying.  It really brings it home how horrible cancer really is... and how treatments affect people and what everyone goes through.  And how blessed we are that things are going well.

We also have a nurse manager call from the insurance company to be sure we are getting the coverage we need and to double-check to be sure things aren't being rejected, etc.  So far - they have been fantastic (believe it or not!)... and she asked if Brett had been into the ER for any reason or had been sick... and when I said "no" she said, 'Wow! That is excellent news!" 

Brett really is the most easy-going patient and really thoughtful and sweet.  I wish I could take away the discomfort, pain and all the other side effects he struggles with!

The prayers and thoughts and encouraging words are amazing!

"How was your summer?" plus Chemo #7

That's the latest question that's sort of strange to answer.  I mean, don't get me wrong - we've done some fun stuff this summer.  But we haven't gone anywhere, including swimming or camping, because that's off-limits for someone with a suppressed immune system.

"It was good.  How was yours?"  That's the best reply, I guess!

I guess not everyone knows what we've been up to!
This is on the wall as you go to the Grace Clinic.

We've had fun with drives and eating at new restaurants, or enjoying our family which came to visit - like my step-mom Debbie and Phoenix, my sister Carrie and Beth and the girls even came for an overnight visit!  We went to some new stores and went to State Fair (of course).  Scott, on the other hand had a great summer with EFY ("Especially for Youth" church camp at a college in Minnesota) with his cousin Jenni, Scout Camp at Camp Phillips, going up North to visit my family, Youth Conference, and also a lot of football practicing.

So life with our new house-guest (named Cancer) this summer hasn't been all bad.  We plan things with Brett during the "week off" or the "non-chemo week"... and we've been letting Cancer know he's not welcome to stay any longer.  We're really over it now... and would like things back to normal.

Today is Chemo treatment #7 (or Cycle 4, Day 1 as they call in it the medical world).

It was a quiet morning.  I think it's getting harder knowing that he's not going to feel well afterwards for days.   We woke up and I made him a homemade eggs/bacon/cheese english muffin sandwich... and packed our lunch bag (a Minion bag we got as a gift from a dear family in Utah whose son is serving the same mission Brett was serving) and laptops and we were on our way.

Thank you to the wonderful "N" family!
It's perfect for chemo day lunch!
(The lunch choices close to the cancer center are not great...
and since we're usually there all day, it's good to
pack a couple sandwiches
and fruit and yogurt, etc.)

Brett's been experiencing a deep cough, so they omitted the Bleomycin (the "B" drug of the ABVD chemo drugs) for this treatment.  He got a chest x-ray and he will get a pulmonary function test next week.  If those tests are okay - then he goes back on the B-drug for the next treatment (or was it cycle? hmm).  Dr. Fenske says studies have shown that dropping the B-drug halfway through doesn't affect outcome usually - and about 25-30% of the cases actually omit the drug during treatment.

Brett was already pretty tired... he couldn't sleep last night, so he slept through most of chemo.  The labs look pretty good (of course - still neutropenic... or barely any white blood cells) but all other numbers are looking good.  Sharing a few pictures from our little cube/room today...

After he finished with all the chemo regimen, we were off to get that chest x-ray!

We always tease that Brett has 3 white blood cells left...

Neutropenic means Brett follows a modified "diet" of sorts.  He can't eat things like the "dirty dozen" of fruits and vegetables, such as strawberries and lettuce because they can't be washed quite enough.  (Fruits/veggies with skins that can be peeled - or if they are cooked well, are good.)  Brett can't go to buffet-type restaurants or cafeterias for the most part.  Eating out is always a risk - but if it's a place that does made-to-order, then there is a better chance things are okay - just not lettuce on his sandwiches, etc.

If you have normal blood counts (or at least somewhere in the "normal" range), then you can handle normal bacteria that is in/on food.

September is Blood Cancer Awareness month (includes lymphomas, leukemias, myeloma) - so you might see that around Facebook for different cancers.  I think that means we want people (for ALL cancers) to be aware of signs for early detection so treatment doesn't have to be so harsh and the cure rate is higher.

Visit https://www.lls.org/

Next stop... Pulmonary Function Test on 9/15 and then chemo #8 on 9/23!