MESNA (oops I mean mesna)

Christian cannot hear this word without it stimulating his GAG reflex!  One of the chemotherapy drugs that Christian has on days 2-5 of chemo is called Ifosfamide or I-fex.  This drug somehow neutralizes the toxicity of the I-fex and protects the bladder. It is given both before a dose of I-fex and 8 hours after.  The pre-dose is administered through the IV line at the cancer center it only takes 20 min. or so.  However, the post-dose is given to you in a little white lunch sack and when you open it, you see - the syringe from hell!!!  Below is a picture of the label.

I love that this oral medication has the words TOXIC and BIOHAZARD on it.  You would think that instead of waking up in the middle of the night to orally ingest it,  you would should handle it with a team of these guys!

Toxic is as Toxic tastes - Christian HATES this stuff - it is probably the worst part of chemotherapy; taking this stuff.  He has tried mixing it with orange juice, he's tried chasing it down with soda, he tried putting toothpaste in his mouth - which only made him hate brushing his teeth!  He's tried and tried and nothing seemed to make it easier.  However, someone at the cancer center mentioned "Atomic Fireballs"!!!!  His lovely sister Chantelle found some of these beauties along with another trick or two and it has become bearable.  The hope is that someone out there who has to go through TIP Salvage Chemotherapy will find this blog and learn how to take it night after night without gagging.!

Step 1.  Suck on Atomic Fireball for 10+ min.

Step 2.  Squirt Chloraseptic as far back in the throat as possible and on the tongue - this has a lovely numbing agent to it.

Step 3.  Squirt down the syringe of Mesna - and quickly, before you can taste it: swallow

Step 4.  Chase it down with some Izzie soda.

PHEW - done for tonight.  Now, go back to bed and try and get all of the above tastes out of your mouth so that you can sleep!  

The Pukes and the Poos of Post Chemo

Such a delightful title, eh?  Post chemo is always very, very, very, very, hard at our house and these few days were no exception.  Christian gets a miracle anti-nausea drug called "Emend" on day 1 of the beginning of every round but because of his intense nausea and vomiting which caused the hospitalization after Round 2, Dr. Bodkin ordered him to receive Emend both on the day of his Thanksgiving Day hospital visit as well as the next day at the Ambulatory Infusion Center.  All told, he received 3 infusions of this drug and we, eh hem, thought we would sail through most of the nasty side effects.
On Saturday, he began a pro-prophylactic course of anti-biotics called Levoquin.  He was prescribed this after his hospitalization for the Neutropenic Fever after Round 1.  The Dr. thought that it best to head off any possible infection with a course of antibiotic though there was no infection.  So, we filled the prescription and set off to endure the tough week ahead.  Vomiting began on Sunday, and Monday began some gnarly diarrhea.  Tuesday, his mom came over to visit and begged us to go to the hospital. But. Christian felt much more in control of his nausea and was trying so hard to eat 1/2 cup applesauce, or some spoon fulls of jello here and there.  Even though he was on the bathroom floor after having diarrhea to weak to make it back to the bed - we still thought we were fighting normal post chemo pukes and poos.  We naively thought that we were within normal reactions to the treatment.  We told his mom that Wednesday was doomsday - it was day 5 out of chemo and either we turned a corner and got this thing controlled at home, or we went into the hospital.
Wednesday was not any better - so after a call to the cancer center, Christian went in for a bag of IV fluids to help to hydrate him and another intervenous anti-nausea drug. We arrived at the cancer center a bit late 3:30 pm and they are only open until 5:00 pm so they couldn't give him a ton of liquids but assured him that he could come back on Thursday and Friday and Saturday AND Sunday - until he felt re-hydrated and less nauseated.
I've got to say something about this diarrhea - it was light in color and mucousy and it STUNK - you don't even know.  The smell floated out of our room and into the living room - it was nasty smelling - I mean diarrhea often is but this was INCREDIBLE - like the smell of meat that's been in the fridge way too long and you open the Ziploc bag to see if juuuuuust maybe you can get away with it.  But the moment you open the bag, your gag reflex kicks in and you slam shut the bag and toss is immediately in the trash!!! That was the smell!
Wednesday evening, we came back to the house and put Christian into bed, he threw up 4 more times and by 10:00 pm his dad had convinced us to go to the hospital.  His dad agreed to sleep there with the kids at the house - what's more fun than waking up to Grandpa in the house????- so that we could get Christian admitted.
To be continued in the next post . . .
Take away -1.  Listen to your in-laws  2.  Take diarrhea seriously.  Seriously folks, take it seriously!

Can't wait to Ring the Bell

Today's last and final day of Round 3 was spent in the AIC - the Ambulatory Infusion Center.  The Cancer Center was closed for the day, and the AIC does day patients much better than the hospital.
It is interesting - even though I have been a part of the "cancer community" because of my husband, I still cannot help but look at the bald heads and wonder.
The room is a big square room with vinyl recliners lining the walls.  There aren't large spaces next to the recliners for visitors and it is almost impossible - if side by side patients both have visitors - to keep from chatting to one another and eventually, eavesdropping.  In the corner, two nuns hovered beside an older, smaller nun and next to them, interestingly enough was a minister from another church and his wife.  The two groups shared a prayer and a scripture moment, then returned to their safe spaces.  Isn't it interesting how life tends to push different people together, we gain strength in the experience and then move back to our sphere of comfort until life pushes us again.

Our daughter's picture of her dad - a likeness???

The last day of a Round means the build-up of a week's worth of toxicity in the system and so Christian spends much and most of the time sleeping - but mostly resting.  We do crossword puzzles but talk very little - somehow I get too chit chatty and go faster than he is able after so much treatment, so I try to slow myself down and become the go-to girl and get things, or adjust them, or hand them over.
At the doorway of the AIC is a plaque with a  bell hanging off of it.  The bell looks very nautical and it has a rope pull that you can yank to ring the bell.  The plaque has the loveliest poem - which of course I cannot remember and I didn't write down.  The gist was this - when you have finished your last cancer treatment - ring the bell three times and go with strength and hope.  One of the nurses said that she cries every time she hears the bell ring.  So maybe, in the spirit of Christmas - and following the logic of "It's a Wonderful Life" maybe every time a bell rings, an angel does get his wings.  May the angels who have trod the hard, exhausting road of cancer with patience and long suffering receive the wings of freedom, of health, and of peace.  Go in strength and in hope.

Happy Turkey Day

Happy Turkey Day!

Happy Thanksgiving everyone!  This is Christian's wife Jana trying to keep this thing updated - something to remember with cancer blogs - if there is a big gap of silence things are either really, really good, or pretty bad.  I hope that I can bring you all up to speed on what's been happening.  

We decided to go ahead with chemo the week of Thanksgiving so as to stick to the original chemo 

schedule and hopefully finish the last and final round the week before Christmas.  Therapy at the hospital took 12 hours - whereas at the Cancer Center it takes only 6 - however, Christian's brother made a lovely visit over with some of their delicious leftovers and in between naps, Christian and I snuggled in bed and watched Sandra Bullock in "The Blind Side".  Christian's parents had our kids and it turns out their Thanksgiving plans hiccuped when dinner's lovely hostess came down with the stomach flu.  The Traditional Thanksgiving wasn't all that traditional but it wasn't bad or wrong by any stretch - just different.  

How could we spend the day - THANKSGIVNG day not feeling grateful for the doctors, nurses, family, friends, neighbors who have made this road just a little less rough - who have tried in every way to make themselves available by doing and being and loving.  Thank you so very much.  Enjoy your turkey induced coma!

WSCD? Let Cycle 3 Begin!

What should Christian Do?

On Sunday evening of last week, I got a call from my oncologist giving me the option of either delaying treatment during the week of Thanksgiving or proceeding according to schedule. Because the "day spa" is closed on Thursday and Friday, I would need to receive treatment in the hospital on those days, which would require some hoops to jump through.   Officially, I would need to be admitted to the hospital, but I would be able to go home at night.

We debated it, but the choice seemed fairly clear.  While I love the Thanksgiving holiday (it could be my favorite) and didn't relish spending it in the hospital as well as being sick the following weekend, I wanted to proceed according to the schedule for various reasons.  First, I didn't want to delay treatment and risk lowering the efficacy of the treatment.  Second, if I delayed treatment a week, I would have chemo during Christmas week, just like last year.  I'd rather sacrifice Thanksgiving so I can be home with family during Christmas week, although chances are I'll be sick.  Finally, I feel emotionally and physically up to it ad frankly, just want to get this over with.  I'd be hard pressed to think of a better Christmas present than knowing I was done with treatment and should be feeling better with each day.

So, I began cycle three yesterday.  We met with the oncologist before hand, all my blood work looks good and we were off to the races.  I took my little fanny pack home with my 24-hour drug and am back in the "day spa" getting some good hydration.

The last ten days have been adventurous.  The week following chemo I had a fever, abdominal cramps, back pain and the strangest combination of diarrhea and constipation. I'll spare you the details on that last one except to say it lasted for a good two weeks straight.  It appears to have finally disappeared yesterday.  The last week, I have generally felt pretty well, but it seems I always have a "big but".  I feel good but... 1) see aforementioned bowel movement challenges; 2) I developed a cyst along the incision scar from a year ago.  It was pretty annoying actually.  It hurt to bend over, had to keep my belt higher, could only sleep on a certain side or on my back and that required keeping my hands carefully positioned to keep the elastic band from hitting it.  Thankfully, it popped/opened/release the alien inside on Sunday morning and feels so much better.  3) Current challenge is with the bladder.  One of the chemo drugs is notorious for damaging the bladder.  Mine has been painful since Friday, but yesterday afternoon around 4:45, I was speaking to a client when jabs of pain began.  Enough to take your breath away.  I got up to make some copies (thankfully everyone in the office had gone home) and it struck again so strong I fell to my knees.  It kept coming on and off.  I managed to make it home and everyone knew something was wrong.  Thankfully we have those wonderful opiates at home.  I spent the rest of the evening in the recliner giving thanks to whatever pharmaceutical company had synthesized the drug and for the doctor in the hospital who had prescribed it.  I honestly don't know what I would have done without.  Ironically, with the diarrhea gone and the pain meds making me sleepy, I got the best sleep in week's last night!

So that's the latest and greatest.  Thanks again to all your love and support.  Words cannot describe how grateful we are.

AFP levels drop

In reviewing my blog, I see I forgot to give the most recent AFP levels.  We found out last week that my AFP levels have dropped from 32 to 7.  This is exactly the trajectory we want to see.  Normal levels in non-pregnant adults should be 6 or less.  Almost there!

Recovery Week - Harder than Chemo Week?

Looking back on things (at least from the perspective of how I feel right now, today), the first few days of chemo week are pretty smooth.  For the most part, you are still feeling pretty well.  About day 2 or 3 the leg pains begin, but I have learned to manage that pain fairly well.  Days 4 and 5 are harder as the nausea begins to hit you big.  I am hoping that we have learned to keep the nausea under control by balancing three different nausea medicines.  The hardest time seems to be Thursday of chemo week to Thursday of recovery week. 

After Round 1, I was hospitalized for neutropenic fever. After Round 2, I was hospitalized for to get the vomiting and pain under control.  The adventure continues.  Tuesday evening, I noticed I wasn't feeling as good as I expected.  At midnight, I was struck with a low-grade fever and these incredible stomach cramps.  I was on narcotics and the cramp felt that stomach hunger pangs.  I can only imagine how they would have felt without the narcotics.  With the stomach cramps came back pain and this crazy bowel movement which seemed to be a cross between diarrhea and constipation.  Thankfully, the stomach cramps went away by about 6 am.

The cramps came back at around 6 pm last night and stuck around until 4:00am.  When they went away, it was like when you take a turn after having the flu and you realize what it's like to feel normal again. 

I did go online last night to look up abdominal pain and neutropenia to see if there was anything I could do.  The results weren't pleasant.  There was no, "make some herbal tea of lemon and peppermint and take a hot bath", instead the results were clinical articles that addressed a variety of very serious conditions, some with fairly high mortality rates.  It was a sobering moment.  I had expected this chemo regime to be much like the first I had a year ago.  I assumed this, because no one told me otherwise.  I obviously knew and know the serious of the underlying disease.  But both my recent experience and what I read last night have lead me to realize that the chemotherapy medicines I am taking are incredibly toxic and dangerous for your body.  I can see some of you thinking, well duh!, we could have told you that.  But we're talking destruction of bone marrow, ulcers throughout your dietary tract, high risk of infection due to the destruction of the immune system.  And I don't mean infection that you might catch a cold or flu, I mean infections so hard to treat that in 20% to 40% of the cases they will kill you.

That got me to thinking about would you want to be told everything before begin chemo.  Usually I fall into the camp of complete disclosure, but in this circumstance, I think I appreciate not knowing.  First, the doctors don't know how any patient is going to respond and what side effects they will have.  The argument would go, why worry someone about a possible risk and add unnecessary anxiety.  Second, and this is key for me, I find I need to stay focused on the moment at hand.  It takes enough effort to focus on basic life functions such as, drink more water, eat more food, don't throw up, make it to the toilet, try and sleep, etc.

Those are my thoughts for the day.  Hopefully they are neither too disjointed nor depressing.  It's Thursday, despite the slight fever, weakness and fatigue (I will rest/sleep on and off all day for hours at a time) and fear of those crazy stomach cramps, I am doing really well.  Looking forward to a semi-normal week next week!  As always, thanks for the care packages, meals, etc.  We really appreciate the support.