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!

Drugs... and the week "off"...

We started to realize the growing group of drugs on the top of the fridge for Brett!  And yes, he has to take Flintstones vitamins.  Even regular vitamins can interfere with chemotherapy -- isn't that crazy?

They aren't all for every day -- most are used for the effects from chemotherapy, or in preparation for chemotherapy (like the lidocaine he puts on his port site).  One day, I went to pick up a prescription - and there was 2 waiting for us... one I didn't even know about.

He does have to take the vitamins, the antibiotic and the antivirus drugs every day.  He'll be on the antivirus and antibiotics for a few months.

Anyway - just an observation!

As for last chemo, Brett slept for the better part of 3 days, and has weathered his cold really well, actually!  He was up and eating normal on Sunday - and even went to church feeling pretty well.  He usually doesn't go to church on the chemo week because he isn't recovered really enough to go by then.  But he was feeling pretty well.  And now this week, he's back to eating (a LOT) and feeling good!  I love the week "off"...

I won't lie.. "Chemo Day" is hard on Mom (me).  When we go in, he's feeling good and we're laughing and chatting.  And by the time we leave, he's glassy-eyed and quiet.  He comes home and goes to bed.  And we watch for the next 3-4 days to see what happens with his mouth, appetite, and lungs.  I also don't like leaving him alone those days in case he needs something (or has some reaction and needs to go in).

Anyway - it's a good week.  Things are going pretty well!  And it's exciting to finally entertain ideas of what the future holds for Brett outside of the short-term and let's-just-get-through-this-week phase.

Just more insight from a lymphoma mom :)

Chemo #6 - HALFWAY THERE!

Today is Chemo treatment #6.  In cancer-speak, that's 3 cycles of chemotherapy.

Brett's attitude is fantastic, as always.  We saw the nurse that did his first chemo (Judy).  She stops to see him each time.  She commented how great he looks and how sick he was at his first treatment.  It helps to hear it from someone because I honestly don't think Brett remembers how sick he used to be.

After treatment, Brett has a few rough days.  Nothing super bad - but loss of appetite and queasiness, and super-fatigued.  Followed by a an upswing of energy and voracious appetite!

The bad news is... he caught a cold.  Normally, nothing to worry about, but it can turn to a bacterial infection pretty easily.  We'll have to be really careful.  Back to wearing masks (he's been a little lax on that).  And even more sanitizer! (We've been excellent at that!).

Overall - things look good.  After the next treatment, he'll get another pulmonary function test and we think in a month, he'll get another PET scan - which makes me equally excited, yet nervous because I don't want them finding anything new.  In the Lymphoma Club - a Facebook group I'm a part of - they call it "Scanxiety" - accurate term!

Here are some fun pictures of today:

Chemo Selfie

The awful "playing dead" pictures he likes to pose for.

Comfy watching TV - although he immediately fell asleep.

You might notice Brett is in a bed this time.  I get the recliner!  No reason for the bed... but I think he's way more comfortable, actually.  (These recliners aren't that great, to be honest.)

I posted a great thing on Facebook that outlines the symptoms of Lymphoma (both for Hodgkin's and Non-Hodgkin's).  Brett had all of these symptoms, except for #9 (since he's never had alcohol. LOL).

The GOOD NEWS:  All of these disease symptoms have gone away.  He does experience loss of appetite and fatigue from chemo treatments, however.  It's hard to explain - but they are different than the Hodgkin's symptoms.

NOTE:  Alcohol Pain refers to pain following alcohol consumption.  It can be chest pain, back pain, etc. after drinking and is often a sign of Lymphoma.

‪#‎lymphomaawareness‬ ‪#‎symptomsoflymphoma‬ ‪#‎nonhodgkinslymphoma‬‪#‎hodgkinslymphoma‬ ‪#‎hodgkinsdisease‬ ‪#‎lymphomasigns‬

Some have mentioned that these symptoms are really like any other infection or virus - like mono.  They really are... but if I had to pick a couple to really watch for, it's the drenching sweats (usually at night), and the large lymph node(s) that don't go away.

And guess what?!  September is Lymphoma Awareness Month!  So I'll be sporting my violet ribbons on my Facebook page. :)

Chemo #5 & Scan Results!!

Eric took off of work so we could go to Brett's appointments together.  (Scott is up North with Grandma Debbie this week.)

We started out at the Lab, of course where everything went smoothly - and then we were off to Grace Clinic to see the nurse practitioner (we should tell you all that her name is Julie).

She checked things over and then brought up our results.  Dr. Fenske was busy (but saw us in the chemo center later on!).

When Julie brought up the current scan - it looks amazing, but then when she brought up the scan from June 2nd, it took our breath away.

Click on this to see the full picture.

When we saw the scan (again) from June 2nd - we realized we never saw a comparison before.  It seriously made us look twice.  You'll also see that his bones are more prominent because his bone marrow must have been working hard - he was very anemic.

SO - what are you looking at?

The big blob in the middle is his heart, the 2 spots up in his throat is his vocal cords (they said he was probably talking)... and the branchy-looking things in his abdomen are his kidneys.  In the cropped part below (cropped for obvious reasons) - you could see his bladder.

The current scan does show some cloudy parts in his chest, and armpit - and a brighter spot by his neck and one above his heart.  Those are likely still malignancies - but look at the PET from before!  My goodness!!!  We can't quit looking at it over and over again.  You can also see Brett's weight gain between the two, also. :)

He's not even halfway through treatment!  So this is extraordinary news.  It makes chemo and all of its side effects worth it.  

Brett over there just curing his cancer!

During Chemo - Complications

Brett had some chest tightening and has had a slight cough (different than the cough from lymphoma he had early on).  This is likely caused by the Bleomycin and often this chemo drug is dropped and not done for the whole course of treatment.  This will likely happen soon since lung toxicity is very dangerous and some effects are irreversable.  

Dr. Fenske spent some time talking to us and going over a few things.  He is really happy with the PET scan and the weight gain. 

PET and CT scans

This is a big day - but we won't know how big until next Wednesday.  Brett is getting PET and CT scans done to determine if chemotherapy is working for him.  We know it is, but how much?  And is there anything new to be concerned about?  He had his first PET on June 2nd - the day after he came back from Texas.  So this would be a direct comparison to that one.

From the Mayo Clinic website:

"A positron emission tomography (PET) scan is an imaging test that helps reveal how your tissues and organs are functioning. A PET scan uses a radioactive drug (tracer) to show this activity. 

The tracer may be injected, swallowed or inhaled, depending on which organ or tissue is being studied by the PET scan. The tracer collects in areas of your body that have higher levels of chemical activity, which often correspond to areas of disease. On a PET scan, these areas show up as bright spots."

It was also State Fair judging Day #2.  We checked Brett into his test.  It takes about an hour to get the infusion of the dye/contract and then the tests themselves.  We went to check in our food items and we would come back to pick up Brett.

When we came back - we were met with 2 nurses... named Susan and Debbie!!  Brett was fully dressed and done with his tests - but he had a slight reaction (hives) to the contract this time.  We had to go up to Radiology and see a physician.  They gave him a shot of prescription-strength Benadryl.

He was checked over by the doctor and he said that all is okay.  It's noted on his chart of this new allergy - but that it is a slight reaction.  He will have to take prednisone and benadryl 13 hours (why 13 hours?) before his future scans.  Whew!

The good news is that he actually have enough immune system to produce hives!  They were pretty excited about that.

We went back for judging at the Fair and all went out to dinner later that night.  Busy day - but overall, it was good!