Random Stories from 3 East
I’ll be writing a bit more these first few days when I have energy.  Typically thoughts hit me at random times during the day and I’ll jot down a note to myself if it’s something I think I should post.  Considering I can’t leave the unit and I’m in my room most of the time, material is a little rough to come by so the bar for posting is pretty low.

Is That a PICC Line or Are You Just Happy to See Me?
When I was admitted on Thursday I received a PICC line.  I was kind of hoping for a port again, but that might happen later.  I guess I can’t get stem cells through the type of port I had last time, so there wasn’t much sense in placing it.  I’ll have the PICC while I’m in the hospital and then they will most likely take it out at discharge.  I’ll have labs twice a week while I’m an outpatient, so I’ll get stuck twice a week, but I just alternate arms and thankfully I have good veins

Getting Kinky in My Hospital Room
This topic probably isn’t what you think it is.  Then maybe again it is.  Apparently IU Health switched to a thinner PICC line in November.  Now, I can’t say for sure that the switch was done to save money or improve care, but I do have it on good authority that these PICC lines are thinner.  Usually thinner means cheaper, but you can draw your own conclusions.  Well after receiving chemo on Thursday night, they couldn’t get my normal saline to infuse.  Radiology was called for a STAT chest x-ray and sure enough the PICC line had kinked inside my vein (The PICC line is inserted in my upper arm, then winds it’s way through a bunch of veins I can’t pronounce.  It ends near my heart).  They weren’t able to unkink it so they ended up having to start an IV so I could continue fluids and get chemo in the morning.  Later in the day on Friday the vascular nurses came up to get me unkinked.  They told me I’d feel the line in my chest and hear weird noises in my head (as opposed to the weird voices).  They took a 10 CC syringe, had me breath in deep and then pushed the plunger in as quick as they could to try and get the PICC line to unkink.  I felt some twisting in my chest on each attempt and true to form the 3rd time was the charm.  I felt a big wiggling sensation and then the saline was able to flow.  Another STAT chest Xray confirmed it was unkinked and it’s worked fine ever since.

Doctors Should do Doctor Things and Let Nurses do Nurse Things
So backing up a little bit, after my PICC line kinked I mentioned they had to start an IV in me.  In walks a Resident and a Nurse.  Dr. Resident (I can’t remember his name) introduces himself and tells me that he and the nurse will start my IV.  I thought this a bit weird and didn’t pick up on the fact that what he meant was he wanted to be the one to practice starting an IV on me.  He was nice, I was vulnerable, so I let him do it.  The first time he tried, the vein blew right away.  My nurse was on the other side of the bed giving instructions and was nice enough to even mark my vein with a pen so he could see exactly where to insert the needle.

So Dr. Resident, undeterred from his first blown IV decided to try and start a 2nd one.  The nurse marked my vein for him and with a little trepidation, he tried again.  To his credit, this one didn’t blow right away.  We actually thought it was good at first and the nurse ended up hooking me back up to the IV pump and they left the room.  However, pretty quickly I started to feel some pain and I noticed a bubble building under my skin where the IV was.  I clamped the line off and the nurse came back in, but this time without Dr. Resident.  The nurse had a new IV in me in no time flat, and this one worked flawlessly.  I appreciate Dr. Resident’s desire to learn.  Not many Dr.’s would probably bother starting an IV, so kudos to him.  But in reality, it’s best to leave most medical procedures to the experts…you know, the nurses.

The Oddities of Modern Medicine
Earlier I mentioned that I had to have a STAT Chest Xray ordered.  I have no idea how much a STAT Chest Xray costs, but I imagine it’s more than 2 tums.  The reason I’m drawing this comparison is that when I needed a STAT Chest Xray, the nurse could order that via protocol (meaning she didn’t have to contact a doctor).  However, when I was having some reflux and asked for tums, she had to call the resident on call and have him place an order for 2 tums.  Yes, an order for 2 tums.

And the Powerball Number Is
So throughout this journey, I’ll keep you updated on my blood counts.  Last time around I always introduced my blood counts with the title “And the Powerball Number is” (or something close to that).  Reason being is they write the numbers on a board for me and as each one goes up, it’s kinda like the old days when you’d wait on the Powerball numbers to pop up so you could see what they are.  So here are my numbers

6/3: WBC 2.4, Hemoglobin 12.7, Platelets 103
6/4: WBC 2.2, Hemoglobin 12.3, Platelets 103
6/5: WBC 3.9, Hemoglobin 11.6, Platelets 101
6/6: WBC 3.7, Hemoglobin 10.7, Platelets  98

For me, normal WBC is 3.6-10.6, normal Hemoglobin is 13.4-17 and Platelets should be 150-450.  However my platelets have always been a bit lower (usually 130’s) since my first battle with Leukemia.

More About Those Numbers
Oddly enough, in some other cancers, they won’t give you chemo if your counts drop too low.  However, since I have blood cancer, the whole idea is to kill my blood cells and the Leukemia cells at the same time.  So my numbers will go down.  I’m not quite sure how much though.  When I was admitted in December of 2012, my disease was much farther along.  I was admitted with a Hemoglobin of 10.7, Platelets at 14 and an ANC of 0.2.  Damn, I forgot to mention my ANC.

ANC Numbers – 6/3: 1.4, 6/4 1.4, 6/5 3.1, 6/6, 3.1

Now my WBC and ANC are spiking a bit because of the chemo.  They should come back down.  But starting chemo with platelets at 103 and ANC at 1.4 is a LOT better than starting at 14 and .02.  The hope is that I don’t get a neutropenic fever, and thus could be home sooner rather than later.

While We’re at It
I’m going to need blood transfusions along the way.  Those transfusions will come from blood bank, so don’t worry about needing to give me some of your juice.  However, if you want to donate on my behalf to help someone else out, I wouldn’t say no.  I’m not sure if I remember the numbers exactly but I’m pretty sure I receive Platelets if they get below 10 and whole blood if my hemoglobin gets below 7.   If my platelets get too low (and 10 is really really really low to begin with) I will bleed out of my orifices and potentially internally was well.  If my hemoglobin gets too low, then my blood can’t carry oxygen to my organs, which poses its own set up problems.  I’m always a bit nervous to receive blood, but the blood supply is very safe these days.  It would be nice to keep the transfusions to a minimum though.

That’s It for Now
I do have more stories I need to write, but will save some material for later.  To give you a little tease, I still need to tell you about Communion, Baseball and Condoms…

It’s The LIttle Things
Some of you may remember that our good friend Amanda got me a T-shirt that says “I pooped today.”  When you are a cancer patient they ask you daily about your bowel movements and constipation can be a real issue.  Thankfully so far it’s been smooth sailing and I am wearing my shirt today to proclaim my accomplishments.

How to “Read Rob”
When I worked at IU Health and was going through my first battle with cancer, the Orders Team gals called my Caring Bridge site “Reading Rob”.  As in “did you read Rob last night?”  Oh you need to “Read Rob” there was an update today.  I realize that some may be out of practice at “Reading Rob” and for others, this is your first time.  So let me give you a few pointers…1) I’m sarcastic by nature and it will come through in my writing  2) Humor is what gets me through this journey.  I’m not making light of my situation or others, just dealing with it the best way I know how 3) I find myself funny, even when LIndsey tells me I’m not funny, if I get a laugh out of something, chances are I’ll say it/write it.

Catching You Up
I’m spending my 2nd day of many in the hospital today.  I am currently receiving my 3rd dose of Cytoxan.  I receive six 3 hour infusions of Cytoxan over the course of 4 days.  On day 4 I also receive Vincristine and Adriamycin, aka “The Red Devil” (Apparently the really bad chemos get nicknames).  I’m also receiving the steroid Dexamethasone, which is all sorts of fun too.

After my first four days of chemo I will get some time off before I get another dose of Vincristine on day 11.  Over the next few days my blood counts will start to plummet.  I will for sure experience headaches and nausea (my most common side effects last time) and may have vomiting and mouth sores among other things.  Not pleasant, but still a lot better than what is to come (more on that later)

Essentially the treatment I’m receiving now is the exact same cycle I received last time.  If you remember, I had 8 cycles of chemo that alternated between 2 different cocktails (1a, 1b, 2a, etc).  So right now, I’m receiving 1A again.  I may need to receive 1B as well, depending on how long it takes to get to transplant.

Dr. Cripe listed out the side effects of chemo this time around, and this is exactly what he wrote:

1) Infections and other complications
2) Death

On the plus side, it’s a really short list of what can go wrong, but that 2nd side effect will be really hard to recover from.

A Little Ray of Sunshine
Kathy is my Stem Cell Transplant coordinator and she stopped by today to explain the process.  She is a very nice lady but her content leaves a little to be desired.  The stem cell transplant is going to be a real bitch.  Harder than anything I’ve done before.  Granted, there isn’t another option with traditional medicine. So away we go.

The Process
One I achieve my 2nd remission (and I will achieve my 2nd remission) I will be transferred to the care of the Stem Cell team.  For shear laziness, I’m going to type SCT for stem cell transplant.  Once with the SCT team (oh hell, how about SCTT) I will meet with my transplant doc, Dr. Nelson.  They need to make sure I am healthy enough for a transplant so I get to do all sorts of fun test over the course of a few days.  Echocardiogram, Pulmonary function, xrays, and blood work to name a few.  They are letting me skip the mammogram and GYN workup.

Before the SCT, I need to find a donor.  My sister has the best chance of matching me.  All siblings have a 25% chance.  Kathy said they’ve found matches with a single sibling, but also oddly enough sometimes don’t find matches even with multiple siblings.  If Michelle is not a match, then they will look to people who are registered at bethematch.org, which is run by the National Marrow Donor program.  Through this program, I have a 75% chance of being matched.  My chance of being matched is better because I am a white male.

So, now the obvious question, “Rob, am I a match to donate stem cells?”.  Chances are no.  Generally speaking, I match with 1 in 100,000 people.  HOWEVER, you might be someone’s match.  Just like a complete stranger may be my match and help save my life, there could be someone out there that is waiting on your marrow to save their life.  So even if it’s very unlikely that the two of us would match, I still strongly encourage you to sign up at bethematch.org.  For one, we may just get lucky and beat the matchings odds (and then buy a lotto ticket) but more importantly you have a likelihood of saving another Rob somewhere out there.  Now, you must be willing to donate to a complete stranger, but if giving some blood to save a life is something you are willing to do, please consider going to bethematch.org and signing up.

Seems Like We Need to Break This Up a Bit
The last section was getting a little long, so I threw in another header to break things up.  Anywho, once I have my testing done and I have my match it will be another 4-8 weeks before I get my SCT (depending on the location and availability of the donor).  During that time is when I might get cycle 1B to make sure I stay in remission.

Now, here is where Kathy’s content begins to fall a bit short.  I will be admitted 7 days before my SCT.  I will receive 3 days of full body radiation and multiple days of chemo that is stronger than what I’ve received to date (and I get some pretty strong chemo).  I will then get 3 days for my bone marrow to completely die off before I receive the SCT.  After the SCT, things don’t get much better right away.  Kathy said that it is almost 100% sure that I will develop mouth sores so bad that I won’t be able to eat and will be fed via IV.  I will also have some level of Graft vs Host Disease (GVHD) which probably deserves a section of its own.

GVHD
Since I am receiving someone else’s stem cells and because those stem cells produce my blood and immune system, I will have GVHD.  GVHD occurs because someone else’s immune system is inside my body and their immune system will recognize my cells as enemy cells.  This isn’t all bad, because they should (hopefully) also recognize any leftover leukemia cells as the enemy and destroy those as well.   However it is somewhat bad because my new immune system will be most impactful to my skin, stomach and liver.   I will potentially develop a rash over most or all of my body that was described to me like a sunburn that will blister and peel (are you beginning to pick up on why Kath’s content needs some work?).  I will also experience stomach pains, nausea and vomiting.  Diarrhea is likely and there is an outside chance my poop will regularly be a bloody and watery stool (ooh, pretty colors in the toilet).  My liver will also be impacted, but the side effects of that are yellow skin and eyes.  If I have really good timing, that may happen around Halloween.

GVHD can be acute or chronic.  I’m hoping for the acute kind.  Through the help of medications, it will last up to 3 months.  If it goes longer than 3 months, then that is considered Chronic GVHD.  Essentially the new immune system isn’t learning to not attack my cells or isn’t being suppressed enough.  Chronic GVHD requires additional medication, that I’m guessing have their own side effects.

Recovery
After I receive the SCT, I won’t have an immune system for about 2 weeks. This will be one of the most dangerous times as I won’t be able to fight off infection.  Eventually my new immune system will start to grow and my blood counts will rise (and GVHD will begin).  Overall, I will be in the hospital for around a month.  This is a little bittersweet because I will be on the BMT unit in an older part of the hospital, rather than in the newer Simon Cancer Center.  On the plus side, I’ll probably be too sick to notice.

After my immune system is strong enough to send me home, I still won’t have much energy.  Kathy said I will need to have someone around 24/7 to help.  I’ll be able to feed myself and walk to the bathroom, but not much else.  I’ll need someone to wake me up to ensure I take my meds and eat.  I imagine it would be good if they woke me up to use the bathroom as well, but I can always roll over to the other side of the bed if they forget.

After about a month I should have enough energy to be a bit more self sufficient, but it will be 3-6 months before I start feeling close to normal.  Throughout this time I also have to have labs drawn, have the potential for additional hospital stays and will visit the clinic 3 times a week.

Wrapping Up
That seems like enough information for one post.  It’s a little daunting to think about, but this is the path forward.  It’s not like I can just sit around and see if something changes.  We need to treat this, and we need to treat this now.  I’ll borrow a phrase from someone else battling cancer and say “God is bigger than Leukemia.”  That is most certainly true and I am relying on him through all of this.  Which brings me too…

A Duck Dynasty Prayer
Those of you new to reading Rob will have to look back to the origins of this.  Although I haven’t watched Duck Dynasty in quite some time, I watched it a lot during my first battle with Leukemia.  Since they ended every episode with a prayer, I figured I could end my nighttime posts with a prayer too.

God, this was possible, but not expected.  I thought getting past 2 years disease free would put me on the path to a lifetime of survival.  At first I thought I was dreaming when I was told the leukemia was back, but I haven’t woken up yet.  I’m separated from my family, my work, and my church.  But you are bigger God.  You are bigger than this disease.  The path forward is not easy, but it is a path.  I will praise you in the storm, dance in the rain, and come out on the other side cured again if it is your will.  Thank you for everyone you have put in my path and all the support that I have.  I give this all to you.  Use me as you need and let’s kick cancer’s ass together.  And most importantly, thank you for another day.

My Routine Check Up
Yesterday, June 3rd, I had my routine checkup.  I did my routine check up things (blood draw, weight, vitals, general chit chat) and then waited in a routine manner in the exam room.  When Dr. Cripe walked in, I didn’t notice the extra person he had brought with him.  I started my routine conversation of what has been going on and describing one issue I wanted to talk about.  I looked up and noticed that Dr. Cripe didn’t have a routine look on his face.  Well Duck (or something close to that).

My Non Routine Day
“Rob, I’m very sorry to say that your blood counts are down.  I also see abnormal cells on your blood slide.  I can say with certainty that the leukemia has returned.”

That my friends kicked off my non routine day.  I made a call to Lindsey so she could come join me.  Dr. Cripe and I briefly talked through option and outcomes.  He wanted to know if I needed time to think about next steps.  Time?  Let’s get this show on the road.  I told him whatever we needed to do, I wanted to do and I didn’t want to wait on anything.  Whatever it is, let’s just do it.  With that we proceeded to the bone marrow aspiration room where he drilled into my hip and chipped some marrow from my pelvis (it hurts worse than it sounds)

What Might Have Been
Let’s not beat around the bush.  None of us wanted to be here.  I had planned on writing an update this Saturday, which would be my 2.5 year anniversary.  2.5 years towards my cure date.  I had planned on talking about how all was going well.  How I was in South Bend to watch my sister cross the finish line in a marathon she is running in my honor.  I had planned to hold all of you accountable to the party we were going to have on December 6th, 2017.  That party is still on folks, we’ve just had to hit the reset button on the date.  The new data is June 3rd, 2020 (and quite honestly, summer works better for me anyway)

My Somewhat Routine Plan
Relapsed Leukemia is not a good thing.  Many people achieve remission but only half stay in remission.  Those of us who don’t stay in remission get a 2nd chance with another dose of chemo and a stem cell transplant.  The things going in my favor is that I am still relatively young and that I was in remission for 2.5 years.  This means the leukemia cells were pretty responsive to the chemo cocktail the first time.  However since they came back, it also means they may not be as responsive this time.  That is why the stem cell transplant is necessary.  I could go into remission again via chemo, but that remission wouldn’t last.  I need to receive chemo, achieve a 2nd remission and then receive a stem cell transplant.  That is the most routine path for someone who has relapses.  If that doesn’t work, then I would need to participate in clinical trials.

Timelines
This battle will be longer than the last one.  Last time I was in and out of the hospital for 8 months.  This time I won’t be hospitalized as long, but a stem cell transplant is nothing to joke about (although I will try).  Typically people do not return to normal life for up to a year after a stem cell transplant.  Here’s a high level overview of the plan:

6/4: Admitted for 4 days of chemo
6/8: Stay in hospital for 1-4 weeks to recover
8-12 weeks from now: Get a stem cell transplant
Sometime after that: Return to a normal life having kicked cancer’s ass a 2nd time

So What Now
First and foremost, pray.  I know many of you will wonder how you can help.  Quite honestly, I don’t know yet.  I am in planning mode right now for the immediate future and long term future.  I need to figure out my disability payments, ongoing insurance, childcare, etc.  I’ll post at some point over the next few days on the best ways to help.  Until then (and even after then) please pray and tell others to pray as well.

More to come in the next 24 hours…