Day + 97...Good News!!!

I have been procrastinating on this update because I am a fairly superstitious, and at times an overly pessimistic person.  I believe that if you think the worst, then you can’t be disappointed.  Rather, one can only be pleasantly surprised if the outcome is anything better than previously thought.  That said, I am slowly trying to learn that perhaps this may not always the most prudent path to take.  A friend gave me a book called The Human Side of Cancer.  The subtitle of this book is “Living with hope, coping with uncertainty.”  There are a lot of shitty and unfair things about cancer, but I have found these two concepts to be particularly gruesome.  Everything is uncertain…there are no concrete answers or guarantees, and all you can do is sit around and hope.  In almost everyway, this goes against the grain of my whole personality. But in the spirit of recognizing that John’s cancer is a journey, and that perhaps I should choose a different path from time to time, I am writing this blog with an “until next time” mind set…while hoping that next time will be a LONG, LONG, LONG time from now.

John made it through the autologous BMT and came home May 3^rd and is now at Day + 97.  Just when he was supposed to go back to work at about mid-June, he instead caught the flu.  The problem with the flu for John was that his immune system is still developing and he didn’t have antibodies against the influenza virus.  So what probably would have been a minor cold for us turned into a week long of fevers, coughing, sneezing, trips to Moffitt triage, and some spectacular displays of John whining. Fortunately, the flu made its way through his system, he felt better and returned to work a week later.  He has also happily made repeated visits back to WOB since the transplant, and made a point to inform me that the doctor said he could have a beer…to which I politely offer a one-finger gesture.

Today he had his three month check up to review his post BMT test results.  And the good news is…..drum roll please……

HE IS IN REMISSION!!!!! 

The coming months will be speckled with maintenance therapy and follow up visits.  He will begin a regimen of low dose Revlimid for up to two years.  At his next appointment in three months time, he will begin receiving Zometa which is an infusion given to strengthen his bones since there are still remaining bone lesions from the Myeloma.  He will continue to take anti-viral medication for the next year, and today he received his first vaccination with the rest to follow at 6, 12, 18, and 24 months post-transplant.  

 

I wish to close this blog by thanking everyone who has helped us this past year.  To my friends – new and old, local and far away – thank you for continuing to be my friends long after I dropped off the grid and was not around for you.  To my friends who have helped take care of my kids for me…I am truly grateful for your friendships and can not imagine what my life would be like without you all in it.  To my Mom and Sister who came down and simply took care of everything.  There are NO words to express the depth of my gratitude and affection.  I only hope that we can somehow repay you even a fraction of what you did for us.  XOXO to everyone.

Since I am HOPING this will be the last blog for a LONG, LONG, LONG time…let’s just say that no blog news is good news.

Instead you all will hopefully be listening to John’s incessant and often annoying chatter. 

So with one hand I raise my Margarita glass to the idea of HOPE - regardless of what uncertainty shrouds our future.  And with the other hand I give thanks and make a silent prayer for a long future of HEALTH and happiness…for everyone.

Home

He's home.

Despite John's best efforts to stay...which even included telling the Dr's and nurses that they couldn't send him home due to the fact that his wife might beat him...the BMT doctors and nurses gave him the official boot out the door on Thursday evening.  If you know John - you know that I am not joking about the fabricated story he made up to try and prolong the stay in his little "cocoon" of Moffitt BMT nurses and doctors.  If you know me - I am sure you can make an educated guess at my verbal response which involved a long string of explicatives.  And if you know me, you also know that my luck sucks.  Of course a nurse walked in at that exact moment.  Which delighted John - who, after the nurse left, informed me that I "needed a better attitude about all this" and threatened to tell my mom.  I chose to leave the room and use the restroom in that moment.

Here is how that story ended - everyone figured out that if he was feeling up to fooling around and making up stories, then he was certainly up to going home.  Much to his dismay, he was given walking papers the next day.  The joke was on him!

So far he is doing fine and his numbers are looking good.  Life at home has included two visits to Moffitt for fluids, and daily visits from the home care nurses who administer his Picc line IV antibiotics.

However, I am really missing the BMT nurses and that little red call button.

Day + 10

WARNING:  For those of you with a gag reflex, or  for those whom might be offended by TMI…this is not the blog post for you. 

Assuming your imagination can fill in the blanks, here are the highlights for the last 6 days...

 

The eyebrows are still intact – although somewhat thinning on the outside arches.  The renegade ones are holding strong.

Rough last couple of days – I believe feeling like complete POO more accurately describes the state of being.

Montezuma’s revenge.  Yes – the volcano has blown.  John’s complaints no longer involve constipation.  ALL of the nurses were right.

Bacteria in the chocolate thunderstorms = isolation = IV antibiotics.

Suspect bacteria in the IV line.

Some surprises wrapped up in sealed plastic bags to go home are not so nice.  Thank God for rubber gloves.  

And then again – some surprises are not worth saving, because they are just plain biohazard.  End of discussion.

Again, thank God for rubber gloves.  The inventor of such priceless items deserves the Nobel Peace Prize. 

It’s the SHITS when you are too sick to care that you are DEPENDing on someone knowing what they are talking about when they say, this too shall pass.

Day + 4

The last couple weeks have managed to both drag and somehow become a blur.  Maybe this is because I am just tired.  That said, I didn’t fully comprehend how much has happened in the last couple weeks since the last blog.  That’s the danger of taking things one day at a time…each day is its own entity full of crap that ranges from being worth blogging about to being nothing more than an annoyance best forgotten.  When John said I might want to update the blog, I was more than dismayed by the fact that updating everyone would entail writing a freaking novel.  So people be warned…it’s a long one.  Grab a beer and be entertained, or take your laptop to the crapper and accomplish two things at once.  Either way, sorry if you get bored and start to nod off…hopefully it won’t be mid you-know-what if you're trying to kill two birds with one stone. 

Here is a snippet of what went on prior to him getting admitted into the hospital.  He got a shot of Neupogen each evening Saturday (4/7) – Tuesday (4/10).  Tuesday morning they put the central line in his chest, and he is now walking around with two IV tubes hanging out the left side of his chest.  The main portal into his chest is covered with a dressing that has to be changed periodically, or immediately if it gets wet.  See picture below…

The same evening of the day they placed the central line, he got his last Neupogen shot.  Then based on a preliminary estimate of what they would be able to collect for stem cells they also decided to give him a shot of Mozobil which is something akin to the “bulldozer” of shots for stem cell collection.  The next morning I dropped him back off at Moffitt and they hooked his IV tubes up and began the stem cell collection.  For those of you who have ever donated plasma, it is similar to that.  Basically, they suck out blood through one of the IV tubes, send it through this HUGE spinning machine next to him, keep the stem cells in one bag, and put everything else back into him via the other IV tube.   See picture below…

Stem cell collection took from 8 a.m. until 3:30 p.m.  Then we had to wait for them to count the cells to make sure they collected enough.  It took about 4 hours for them to count, and they won’t let you leave because if you didn’t collect enough, they have to give you another Mozobil shot so that you can come back bright and early the next day for another full day of collection.  He needed 4 million and fortunately they were able to collect 5.2 million!  We went home and the remainder of the week was just some easy breezy visits to Moffitt to get his line flushed.  Fortunately my sister flew in during all of this and took over as CEO of the Herbst household for a week.  Only a sister would wait up until midnight, reheat the dinner you missed, and sit with you to make sure you didn’t face plant into your food.  

Monday (4/16) was hospital admittance day, and having been through a few different hospital stays with him I can safely say that there is nothing like checking into the bone marrow transplant unit at Moffitt!  It’s like the flood gates to Rome open up…nurses were in and out, hooking him up, weighing, measuring, evaluating, quizzing, and instructing; social workers were stopping by to introduce themselves; transition nurses stop by; and physician assistants come in and review everything you just told the last six people.  Once things quieted down, John took a shower…which might seem like a small insignificant detail.  However, it is worth noting that John solidly refused to shower since the placement of his central line, which I might remind you all, was the prior Tuesday…yes you did your math correctly…six days and no shower.  Apparently, he was a wee bit worried about getting the central line dressing wet and having to race up to Moffitt to have it changed.  Suffice to say, that shower was a relief to us all. 

After his shower and dinner, we settled in to wait for chemo to begin which was scheduled for 10 p.m.  The original plan was that I would stay until about 9ish and keep him company via Skype during the Melphalan drip.  No dice.  I stayed to the last dang drip!  The two brown bags at the top are the Melphalan.  So John…when you get excited to point out that Sean posted (and possibly self-declared) that it was husband appreciation day…there you go buddy!  J 

The next day, Tuesday, was an uneventful day of rest for him.  Wednesday was Day 0 – transplant day.  While it sounds like it is a surgery, a bone marrow transplant is really something like a blood transfusion. See the pictures below for his stem cell transplant bags.  He got 6 bags and it took about 15 minutes per bag. 

They say that since transplant gives you a new lease on life; every day after transplant is a new day.  We are officially at Day + 4!  Since the chemo, John has been feeling increasingly crappy which will probably continue for another few day.  His white cell counts are continuing to drop and we are just waiting on engraftment to happen where he begins to grow new stem cells.  Right now he is neutropenic (http://en.wikipedia.org/wiki/Neutropenia) and will probably be in the hospital another 10-12 days or so depending upon his numbers.  His biggest problem continues to be the neuropathy in his feet as the Melphalan seemed to aggravate things.

For my part, here are some important lessons I have learned during this process.  Hospital pull-out couches suck and will not give you a good night’s sleep.  Running is really good therapy, but running when you are dog tired is much easier after a couple cups of coffee…however it is really important to use the bathroom first.  And making casual conversation with people while you are leaving the hospital and walking to the car can sometimes be the most terrifying thing you can do.  Even if there is some mysterious reason that your paths crossed, it can completely derail you, so just avoid random conversations. 

  

Auto it is...

After seven months of wondering what's next, and wishing next would hurry up and get here, it is hard to believe that "next" has finally arrived.  All of the vital organ testing came back with good results, and the two tumors on his ribs and lung have disappeared.  There is still 4% of the cancerous plasma cells left floating around, but that was no surprise given the stubborn .4 M-Spike.  The results were good enough for him to be eligible for an allogeneic (donor) bone marrow transplant.  However (isn't there always a however?), John made the decision to have an autologous bone marrow transplant where they will be using his own bone marrow.  This week has left me too brain dead to go into more detail about autologous stem cell transplants.  So for more information on exactly what in the heck this is you can visit: http://www.webmd.com/cancer/autologous-stem-cell-transplant

The reason John has chosen to go this route is that he is concerned about post-transplant quality of life issues; and quite frankly surviving the transplant, given everything that he has struggled with thus far.  He is optimistic that when his Myeloma numbers go up again, there will be more treatment options available to him.  I support whatever decision he makes, but I have mixed emotions about this.  I'll leave it at that.

That said, he will begin getting Neupogen shots this Saturday (4/7/12) which will help stimulate stem cell growth.  He will get a Neupogen shot Saturday, Sunday, Monday, and Tuesday.  On Tuesday they will also put in his central line.  On Wednesday (4/11/12) they will collect stem cells.  Apparently this is a 4-6 hour procedure.  If they are not able to collect enough, then he will get another shot with some other kind of magic crap to make him grow more stem cells overnight, so that they can collect stem cells again on the 12th.  Hopefully they will fish out enough stem cells on the 11th!  And if you have Facetime or Skype capabilities, feel free to digitally drop in and say "Hi" to him on the 11th, as I am sure he will be happy to have someone help him pass the time.  Then he will get a couple days off, followed by an admission date of April 16th.  

On April 16th he will get one huge dose of chemotherapy using a drug called Melphalan.  The next day will be a day of rest.  And then the following day, April 18th, will be his Day 0 when they do the transplant.  In a nut shell, during the next couple weeks his counts will drop, he will get sick, his hair will fall out, new cells start growing,  his counts come back up, and then he can go home for recovery.  On a side note, I am accepting wagers as to whether or not his eyebrows stay on or fall out.  I'm betting those suckers hang on for dear life!

Today, we spent several hours in the ER at St. Joseph's due to high BP and a tightness in John's chest.  It was a spectacular experience, and the guy in the next curtain made me grateful I went to work for a few hours while they finished the stress test on John.  That guy managed to wail and ball his eyes out, while LOUDLY wretching his guts out...all at the same time!  I was equally disgusted and impressed - as this is something that even my high drama middle schooler has not managed to achieve.  Clearly, that takes talent.  Fortunately, all of John's tests were negative.  He was sent home with discharge papers in hand, and a receipt for the ER deductible - printed with what appeared to be a freshly installed ink cartridge.  Wouldn't want anyone to mistake the exact cost of today's adventure.  Hopefully, they didn't also send us home with whatever the hell that dude in the next curtain was gacking up.    

Even though I spent today trying to get to work, navigate the ER (and not touch anything in that germ cesspool), as well as check in on my tonsil and adenoid free daughter who was at home sleeping off anti-nausea meds there is a bit of good news.  Somehow in the middle of all this, I miraculously somehow managed to answer a really important phone call from Moffitt.  His oncologist's nurse called to tell me everything had been approved...signed...sealed...and that we were being delivered the official schedule for John's autologous BMT.  It was like that commercial where in the midst of a cacophony of sounds there is suddenly a moment of pure silence.  In that moment I took off my cranky pants, put on my big girl panties, and took that moment to be thankful.  I was thankful things are moving forward.  I was thankful my principal at work has been so supportive - even after weeks like this one, and knowing what's yet to come this month.  I was thankful for all my friends who continue to be there for me.  I was thankful that my sister is coming next week.  I was thankful that my mom is arriving the 24th.  Because without these people, we might not have made it this far.  But most of all, I am thankful that we have made it this far...and that John is still here...bugging the crap out of me.    

Allo or Auto BMT...that is the question!

So for those of you wanting the quickest version of the latest update on John, here it is...
MORE WAIT AND SEE.

For those of you curious about the extended version, read on...

John finished his 8th cycle of chemo, and the hope was that since they changed the chemo up a little by adding cytoxin, he would hit the magic number of .3 for his M Spike.  No such luck.  That mother f*&$ing M Spike stubbornly has chosen to stay at .4.  The original plan was that the there would be no follow up appointment with his oncologist...that the test results would be sent to the BMT Dr. and he would call us to move things forward once he reviewed everything.  Apparently, he didn't like what he reviewed and so he had his nurse call us to say that John had been taken off the transplant board...that he would not be getting a transplant right now...and to go back to oncologist.

This made for a long depressing weekend of wondering what would be next because the last four cycles of chemo haven't seemed to make a difference in his numbers at all.  Today we went to see his oncologist and she still believes moving forward is the right thing to do.  She wants to proceed with the work up to see if there is any residual disease left in his bone marrow.  If the bone marrow is disease free, then he will proceed into an allogeneic bone marrow transplant, but he will not be a part of the clinical trial study.  If there is a small amount of disease detected in his bone marrow, then she will be recommending an autologous bone marrow transplant, where they use his own bone marrow instead of donor marrow.

Tomorrow begins 3 long days of the vital organ testing workup.  Wednesday morning starts by meeting with the financial counselor.  I guess the purpose of discussing finances first is to put you in a bright and chipper mood right before you get a bone survey, muga scan, and then a three hour psychosocial with the Moffitt shrink.  That aught to go real well.  All of this is followed up with a visit to the Moffitt vampire lab where they collect more blood for additional labs.  Thursday starts with a trip to see the social worker, and the physician assistant; then he gets an EKG, has a pulmonary function test, and then a CT done on his chest and sinuses.  And finally, Friday is his bone marrow biopsy...this is the easy day.

As you can see - having every test under the sun performed will yield a FULL picture of everything going on.  The oncologist will call us Monday or Tuesday of next week with preliminary results of the work up and a decision regarding his transplant.  Obviously, I am praying for everything to come back clear so that he can get an allogeneic BMT because it is the closest thing they have to a cure.

One thing I have learned is that everyone's journey through cancer is completely different.  It seems like common sense, but it's another story when you are doing your best to live with it.  You find yourself talking to other people and comparing how things are going.  When you meet someone who hits their magic number in less than half the cycles as John, it can really make you crazy thinking about it.  On the one hand it makes you hopeful that things will be ok; that this isn't a death sentence.  On the other hand it is frustrating because you wonder why does it always have to be so hard.  Why can't it be just a little bit easier?  

Cycle 7 complete...on to cycle 8...not so chatty today

It seems like the endless repeat of chemo is finally coming to an end as John finished cycle 7 and started cycle 8 this past Tuesday.  We met with his Dr. last Friday and his numbers went back down to .4 which is at least the right direction.  Since he seems to be hovering at .4ish the doctor decided to change things up a little bit.  Instead of chemo via only pills, he went in for an infusion of a lovely mixture called Cytoxin.  What John thought would be a quick two hour drip trip, turned into a 6 and 1/2 hour affair.  He did manage to talk them out of a ham and cheese sandwich so at least he didn't wilt away from hunger.

The plan thus far is that on March 14th-16th they will do all of the vital organ testing for his BMT.  We should meet with the BMT doctor sometime the following week.  Maybe by then we will know if he can be part of the clinical trial - although at this point it seems moot.  The week following that, he will get the central line put in, which is some kind of a surgery as well.  And to make everything all the more special, that is also the same week that my daughter is getting her tonsils removed.  If anyone has a magic potion that allows me to clone myself, please ante up.

Anyway, as things stand now we are still set for April 5th as his admission date for the BMT.  Of course we are still in a "wait and see" mode, so as usual we will find out more later.  But as everything else seems to go, we probably won't find out ALL that much more.  I am finding that I have become used to the endless holding pattern this cancer put on our lives.  I want to do whatever we have to in order to fix this and move on; but a little part of me is scared to move forward because today he OK...and I don't want that to change.