Our MDS Journey, Part Three

"If there is something to be learned from having cancer, it is that there are far greater things to sweat than the small stuff!" ~ Me

Day 7 (Thursday, 10 Jan)

All is confused by the 'headache' deal that I'm having whether it be from the chemo, from the anti-nausea medication, the environment, or caffeine withdrawal.  It always seems to hit when I want to go out and run some errands or work in the yard or something!  The 24 hour chemo drip ends today and I finally get to transfer to a more solid diet--I really haven't eaten anything except pureed potato soup, tomato soup, crackers in the soup, or grits.  I'm lying, I snuck in 4 Krispy Kremes the first night of chemo... the bride won't like that.  Hey, the anti-nausea medicine is their to keep me from barfing my guts out, and it worked!  Rashes galore, and they are itchy as all get out!  Solution to the itch and allowing the rash to subside is this menthol lotion they issued me, the menthol also works well in a bong, just kidding.  Funny Do of the day:  A nurse was removing tape on my chest, I yelled out loud in pain and it scared the mess out of her but then her initial reaction was to slap me on the leg--lesson learned, you never know what folks' reaction would be in a situation like that, best if that is done in a more open environment.  Had she been positioned differently, she might have slapped me in the face, and now we have a whole other problem.

Days 8-10 (Fri-Sun, 11-13 Jan)

This is a "learning hospital," so when the Doctors make their rounds, it's almost like feeling that you're the most important patient in the hospital.  There's the Attending Physician(s), the Fellow(s), the House Officers, Physician Assistant(s), Registered Nurse(s), Social Worker, Pharmacologist... did I miss any?  The room in most instances, reaches full or over capacity.  I am the most important patient for five minutes.  For the most part, I ate my tail off on good solid foods.  I'm not a big cereal eater but since I lost complete taste, cereal and all of its blandness is now my favorite morning food.  Finally, I'll be able to do the Cheerio or Special K challenge!

Days 11-13 (Mon-Wed, 14-16 Jan) - Round Two Chemo

This round of chemo beginning around 1000 on Monday is called 'Eptoposide,' and includes 2, 3-hour 1000 mL bags and then a 500 mL bag--takes approximately 8 hours to complete.  I point this specific chemotherapy out as this particular chemo has the most dramatic effects on the body.  Along with the chemo, I take a multitude of liquid and capsule drugs--anti-fungal/bacteria, anti-nausea, chemo type, plus many others several times a day and into the late and early hours.  

It's been a journey thus far, more so on the emotional side.  I'm very anxiety ridden and am on medication to relax the nerves.  You can imagine the many reasons for the anxiety (for those that know me and my family)--I promised I would write about some of the specifics in a later journal entry, and I will.  With that being said, and the many hours of non-sleep, many thoughts (like the one at the top of the page) enter my mind and I hope to somehow memorize them.  For instance, "chemo ain't nothing, it's wondering when you're going to wake up with a bald head!"  I am on the good side of chemo at this point, but when I walk my laps around the ward (yes, we have to walk laps to keep clots away), I can't help but notice the real heroes on this floor, those on the 'other side of chemo' the ones striving for that next step, the next breath, curled up in blankets because they have lost so much weight battling cancer.  I can't help but think I'm in this group now, a community of cancer patients who struggle each day with varying ailments and will soon be part of the community of those that fought and kicked its ass.  

"They say when times are tough, you'll find out who your friends are.  When you have cancer, everyone is your friend because I've already been through tough times and I've already cleaned out my Facebook Friends List!" ~Me

Our MDS Journey, Part Two

One is always frightened of the mess when it comes to paperwork, hospitals and insurance providers/Tricare.  In my case, the fear is still there, yet with a case manager at Walter Reed facilitating my care and a case manager here at Johns Hopkins, the confusion that sometimes arises from a military to civilian hospital has been somewhat minimized.  Here is the key though to making sure that if you have to be admitted to any hospital that you have a plan in place and what I mean by this is, having your own paperwork in place to facilitate paperwork and conversations.  I can tell you that without my wife being by my side, handling paperwork, admissions/transplant/insurance offices, I would have already blown my lid.  

Power of Attorneys, living wills and advanced directives should be in place before an extended hospital stay and for that matter, if you're a military family where the military member deploys, it should have already been in place.  If not, the base legal office provides this service free of charge to military families.  Extremely powerful tools that only take a couple of hours to accomplish!  

Although we were prepared for an admission, chemotherapy, transplant, the emotional toll didn't quite strike me until the day after admission, my second day.  Being awakened every four hours through the night for 'vitals' and then the onslaught of nurses, cancer team, and most of all seeing the other patients with their trees of liquid walking the hall.  I have since found out that walking is good for us because of all the liquid that tends to swell ankles and feet.  Speaking of liquid, I have never pee'd so much in my life, goodness gracious!  

Day 2 (Saturday, 05 Jan)
After three attempts, an IV was started as a temporary fix to my scheduled surgical insertion of a Hickman Device.
If I was not admitted, my family and a few friends were going to go out for some sushi--my wife, son and good friend brought sushi, and my favorite cake, red velvet to celebrate my forthcoming 40th birthday.  The fear and worry is settling in once everyone leaves--only my son left here, decided to stay the night in my room.  We live over 1.5 hours from Johns Hopkins, so my bride stays across the street and my son and mother-in-law arrive on Friday's to stay the weekend, or at least that is the plan!  

Day 3 (Sunday, 06 Jan)
Was informed that I will have the Hickman Device surgery and chemotherapy to begin on 07 Jan (my 40th birthday).  Hard to swallow that we are here, anxiety is setting in.  Almost feels like another Sunday, except in a hospital.  

Day 4 (Monday, 07 Jan)
I was awakened by an extremely wonderful staff of nurses and techs at 0630 with balloons, signs and a wonderful calendar with a hand drawn South Carolina Gamecocks football in honor of my 40th Birthday!  I think it was to get me in good spirits for what was to come today.  Minutes later a tech came in to let me know that my chariot (stretcher) had arrived for my surgery to install a Hickman device.  I was all about that little doohickey because I absolutely abhor needles--this device is surgically implanted in the chest area to eliminate all the needle sticks.  
Chemotherapy began around noon with a major dose taking an hour and one that drips for 24 hours--this process will continue until Wednesday.  Also, two bags of blood transfused into my body--thank you to whoever donated that blood!  Put on a liquid diet!  I shed some tears with my bride, held her hand, and she reassured me that we will make it through this. It has definitely rocked our world and ate away at our core, but we remain vigilant and strong as a team and love like we never have before.  

Day 5 (Tuesday, 08 Jan)
Day 2 of chemotherapy and my only complaints are that I have to eat liquid food and have this headache that doesn't seem to go away.  Nurses suggested that I drink coffee because I may have caffeine withdrawals--I'm from the South where sweet tea and good 'ole cup or three of morning Joe keeps us going, I was all in.  It worked!  By afternoon, I was beginning to feel sluggish and exhausted, napping most of the afternoon away after the noon time chemotherapy.  I have to say that the nurses, techs, doctors, staff are absolutely wonderful!  My bride drove back to NOVA for an appointment tomorrow.  

Day 6 (Wednesday, 09 Jan)
The headache is still bothering me but a coffee and some Vitamin I worked it out to a level that I could manage.  My diet has changed, things don't taste quite the same and my sluggishness has increased a tad.  Embedded here at Johns Hopkins is a Navy Social Worker by the name of Patrick, who is completing a portion of his training--absolutely a wonderful asset to the team here and want to thank him for listening to me today.  
I have to say, I couldn't be any more happier that my bride made it back and was able to obtain a suite/room across the street at the Hackerman-Patz Patient and Family Pavilion.  She comes and goes as she pleases just as if she were walking to a neighbors home.  Only a hospital stay can get me to watch Kevin Costner movies back to back, "For Love of the Game," "The Guardian" and "this great movie."  I can't believe how much blood (daily) they extract from me... my nurse commented, "we give you two bags of blood only to get them back!"  Tomorrow, I go on chemo break for 4 days and Friday I can have some solid food!

The journey thus far has made me reflect on the happiest moments and memories in my life, another tool in helping me get through this so that I can create many more moments and memories.  Many props to my wife, who remains strong, by my side, and still wants to talk about the bills.  "I don't see my life without her in it."

Myelodysplastic Syndromes (MDS): Our New Journey, Day One-Half, Part One of ?

I don't even want to begin to tell you what this military family has been through since September of 2011 and really for the majority of 2012--I'll save that for another blog in this series.

Just a short snippet of my current situation:  What began as some blood work during an emergency room visit in April 2012, to possible liver disease, then hemochromatosis, all stemmed from a rare blood disorder, Myelodysplastic Syndrome (MDS) recently brought to  headlines/media due to ABC's GMA Robin Roberts having MDS.  On 20 December 2012, just days before Christmas, we were informed of my diagnosis and the severity of such.  Quite frankly, it took my wife's and my breath away--absolutely upsetting to have your own mortality dated and somewhat 'suspensed.'  Between 20 December and today (04 Jan), much has occurred, including my first day/night of what is estimated to be 5 weeks to 3 months of hospitalization.  

If for any reason you believe through research/reading on MDS that this disease is not a cancer--I often asked why is it that treatment requires me to be in a Cancer Center, Oncology Doctors, Chemotherapy, Remission, and Transplant?  As one of my doctor's states, "plain and simple, no matter what the literature states, what you have my friend is cancer, it's treated as such!"  I'm all in when doctor's forgo all the mumbo jumbo, and speak in lay terms and don't beat around the bush. 

Day One-Half:

1.8 hour drive to Johns Hopkins met with quite a bit of traffic on the BWP, but if you drive the NOVA I-95 Corridor in and around the Outer Belt/Mixing Bowl, the BWP is just another drive!  Absolutely astonished me that the TV in my room stated it was $10 per day, maximum of 10 days for TV/Telephone--Unbelievable!  We paid the $100.

The current residents (patients) were scoping me out, peaking around the corners, yelling out "fresh meat!"  They don't know that I'm going to shave my head tonight and try to blend in tomorrow/double agent on them!  I'm thinking about ganking the PS3 from the media lounge--it's only for the residents and they all seem older than me, they don't play PS3!

I got a fancy new bracelet.  CT of my upper torso, check!  Initiation briefing, check!  Briefing on proper hygiene, check!  Issued paper breathing device and OJT!  15 different labs accomplished but for whatever reason, the veins didn't cooperate so they had to use an ultrasound guided needle.  The nurses and staff think I'm going to be a hoot.  They haven't found my contraband honey buns, yet.  

If you're interested in becoming a donor, please visit the National Marrow Donor Program!