What a Journey: Cancer/MDS

It's been quite some time since my last post and I'll have to keep this one short as it has only been 3.5 hours since I stepped out of the radiation lab and I am beginning to feel the effects of such.  I received about 1 hour worth of full body irradiation in the last step prior to my bone marrow transplant (BMT).  BMT occurs tomorrow morning around 1000--my son, a healthy 18 year old will step foot into the hospital around 0530 tomorrow and I'll follow at 0730.  I will actually meet with him, take some photos prior to him setting foot into the PACU.  While most are excited, and I can't say that I don't share in the excitement, it's more frightening than anything.

My entire immune system has been slowly chiseled away over the past four months and this transplant, with all the support of prayer and hope will eradicate my old immune system and be replaced with a new one--completely changing my blood type as well, from O-Positive to B-Positive.  Many new hurdles and milestones will have to be met over the next 60 days, so the journey is still not halfway complete.  We can say that my 'counts' (white/red blood cells, platelets, neutrophils) after being targeted by chemotherapy over the past four months recovered to higher levels than when I first entered the hospital in January.  I was pretty sick and barely had an idea until the last weeks of December 2012 that I was sick when symptoms and complications began rearing its ugly head.

I really hope to one day sit down, and thoroughly explain my sickness (in laymen's terms), hell, I barely understand it as we learn something new every day.

I can't thank my family and friends enough for the support of prayers, thoughts, posts, messages, cards, letters and gifts over the past four months.  It has been a large part of our healing and motivation to keep pressing forward.

Suzy Lee Weiss and My Holistic Approach to Her Op-Ed

A few days ago in the Wall Street Journal, an op-ed piece was printed/posted online about a high school senior, Ms. Suzy Lee Weiss, essentially complaining about the approach universities, in specific Ivy League schools take in their determination of college applicants.  It’s been said in many articles, responses, as well as Ms. Weiss that the article was written satirically and for the most part many children her age are in full support of the article.  To be clear, satire in general is pointed at the actual and written in humor, left to be interpreted either humorously, truthfully, or simply whining.  I interpret her piece in all three aspects, I took a holistic approach.    

Ms. Weiss is actually a pretty intelligent 18 year old and seems to have what it takes to make it in this world.  A 2120 SAT score and a 4.5 GPA, on the other hand, intelligence and a stint as United States Senate Page alone will not get you into an Ivy League college.  She mentions in a television interview on the Today Show that she did volunteer a few times but really did not sell herself as a college candidate.  She did receive some acceptance letters from Big10 schools, but I assume that wasn’t enough for her.  

Ms Weiss also stated that she believes Ivy League schools and universities in general should take a holistic approach to college applicants.  Isn’t that what they did?  She didn’t get accepted because she just didn’t have enough on her resume/application while other applicants had a list of volunteer activities, school activities, sports, you know, a holistic application, well rounded.  Life is a rough road and this generation of children with their self-entitled thinking of life is going to get them in trouble.

I don’t understand where her parents or what her parents were thinking allowing her to rant about the family.  I grew up in a home where I was loved, yet also knew my place in the home.  Grateful that there was a roof over my head, food on the table, and thankful for my father’s service to country.  Ms. Weiss slaps her parents in the face with no remorse—disrespectful and ungrateful to say the least.

If for one minute over the last five years she put as much effort into worrying about what others are accomplishing and spent time taking care of number one, then maybe, maybe she would have received an acceptance letter from an Ivy League school.  

I say to the children who have embraced Ms. Weiss’ op-ed/satire/complaint letter, that they look elsewhere for a source of motivation or impetus with college applications.  On the other hand, maybe you should use it as a guide on what you should do—everything those schools are looking for is everything she didn’t accomplish, hence her demise.  

Nothing and I mean nothing in life is easy, life is not a reality singing show, where the battle is only a TV season and you have a music contract.  Life is a constant battle with very little ups and many downs and your life is dictated by how you react to those ups and downs.  This generation was taught there isn’t first, second or third place, “everyone is a winner,” yet I believe Ms. Weiss just received her first dose of the real world and it hurt.  She may be well on her way because of her op-ed to bigger and better things or it may just come back to bite her.  At the end of the day, we’re all writing about her, she received some TV time and that is more than most her age will ever get.  If anything, outside of my own complaining, all I have to say is, “well played,” but she still isn’t a hero for her generation in my book.

Our MDS Journey, Part Four

It’s been a bit of time since my last input in either of my blogs, journal and quite a bit in my care occurred, leaving many of my family and friends out of the loop.  My team of doctors and nurses who visit with me every morning of the week, had commented up until Day 18/Thursday, 24 Jan that they were extremely surprised and excited that I was doing so well.  So well as compared to most patients at my stage, that I had not had any “bumps in the road,” they spoke to so.  That Thursday, I carried on in the morning into a routine that I built for myself—waking up 0600, shower/get cleaned up, have breakfast, and go for a brief walk (1/4 to 1/2 mile) all by 1000-1100.  That morning though, I felt a bit fatigued, so I decided to lie down and take a nap.  

This nap lasted a couple of hours and ended with shivering and teeth rattling—thinking that this was due to just being a bit cold, I gave it 10-15 minutes before I called the nurse.  Once I called the nurse, gears changed, 10 warmed blankets were added, vitals taken, doctors called, blood culture/labs were taken and the next three days would leave me bed ridden.  My initial temperatures were in the 102-103 range but would peak at 104.2.  The final disposition was that I received via an open sore in my mouth a strep/bacterial infection—they determined this from live cultures they grew in the lab.  Day 21/Sunday, 27 Jan finally brought a break in fever with sweats off and on all day, with the final break late Sunday evening.  I finally left the bed, beyond bathroom breaks, for short walks and so forth on Monday. 

In the time since my last entry, I have also changed/moved rooms twice, with each one better than the last.  The last move occurred last evening.  I now have a view over much of the City of Baltimore and a warm and inviting afternoon sun.  The sun was something that I had to walk clear across the hospital campus to get a view and to bask in—a simple pleasure/feeling that I seemed to have taken advantage of.  There are a lot of things in life that I seemed to have taken advantage of, now to be replaced with newer memories and with a sense of appreciation that I could have never imagined prior to cancer.  Life will never be the same. 

Today is Day 25/Thursday, 31 Jan.  I took my first caffeine pill and today was the first day in a very long while that I do not have a headache!  What a feeling!  I also have been on Ambien for five nights and have had the best nights of sleep since being admitted—a full eight hours every night, with occasional wake-ups for vitals, but right back to sleep!  Day 25 is the day that we should begin seeing my counts rise in the neutrophil category—the other categories, Red Blood Cells, White Blood Cells and Platelet counts are all increasing which mean that the neutrophil category should begin showing signs of increase.  This increase will determine when I will and how I will be temporarily discharged (either to remain the area or allowed to return home).

The temporary discharge will be for approximately 2 weeks or more to allow all the counts to return to a level to allow for more chemotherapy, then transplant and Lord willing, the cure.  Lastly, I would like to really thank my wife as she resides across the street at the Hackerman-Patz Family Pavilion, makes my breakfast (this hospital food is not for cancer patients), is here by 0800 and stays right by my side in my room, on my walks, makes lunch and dinner and leaves at 2000-2100 only to wake to “groundhog-day.”  She’s my hero through this, my rock and the shoulder for me.  We both pray that we get through this so that we can progress and move on to the next phase in our lives, the birth of our daughter in the latter part of May to early June of this year.  She is why I fight so hard.  Love to my bride and my daughter. 

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!

Where Have I Been?!!!!!

The last post on my blog was one-year ago, just about the time when the bride and I were working on having a baby the alternative way via IVF.  I won’t get into the details of that, rather I’ll slightly tell you that the year brought forth many ups and one major downer. 

We got to see the beautifulness of the development of a beautiful baby girl and then the world changed two months ago when we lost her at 38.1 weeks gestational age.  Hell, we had never even considered a loss so great as that—couldn’t even fathom that historic moment in our lives with the purchase of a larger vehicle for our new family, setting up and having a baby shower, receiving gifts, filling out thank-you cards.  Picking out the best furniture that would carry young Victoria Morgan into her teenage years and possibly become her child’s furniture.  It was made out of the best Maple the industry had to offer—we were proud, it was better quality than our own bedroom furniture.  Infant car seats and the stroller was the most difficult to choose.  Then, her clothing… we had even picked out her winter jacket, snow pants for the bi-annual family Christmas vacation this year to Europe.  Her room was completed in two months and with the level of care and precision that Bob Vila would be proud of.

With all the preparation, what parents would even consider a possible loss, especially since all the doctors and nurses stated, that “all is well,” “she’s growing on pace?”  It definitely didn’t cross our minds.  Then that one fateful Thursday morning in March brought forth a different set of events.  Victoria was not moving like she normally does after breakfast and the stomach seemed a bit low.  One hour after the call to Labor and Delivery, we were told that we lost her, she was without a beating heart, “I’m sorry, she’s gone.”  “No, this can’t be!”  13.5 hours later, Baby Victoria was delivered in the minutes past midnight and for four amazing hours, we held her.  I sit here at this computer, often scanning down to look at the framed photo of her on this desk of mine and for two months considered and pondered a way to finally voice this to the rest of the world.  Here we are. 

Merriam Webster defines Stillbirth as “the birth of a dead fetus.”  Others define it as “the birth of an infant that has died in the womb after having survived through at least the first 28 weeks of pregnancy.”  Well, according to our state, and the Federal Government, a Stillbirth is beyond 20 weeks.  At any rate, I define Stillbirth as the loss of my daughter, Victoria Morgan.  Because we’re Veterans and my bride is still Active-Duty, we opted to have her buried in Arlington National Cemetery—our future home.  She’s gone.  Our memories of Victoria are the movements after breakfast, the sound of music, and her gymnastics when it was time for an ultrasound.  Most of all, the touch of her hand, her long hair, beautiful skin, and the features of both of us embraced in our arms.

The only things that haven’t changed include her room… the bag has never been emptied, the pillow that she laid upon and we took from the hospital, still lies in the corner of her crib, everything in her room has remained the same since coming home without her. 

One of the few things that we have embraced in our hearts next to Victoria is not only our immediate family but our military family.  Whether virtual (via the internet/email/social networks) or personal (at our doorstep), they were there and it was immediate.  Both families were very vital to the immediate recovery in the hours, days and weeks following Victoria’s passing.  Without them, I’m not quite sure how we would have held up.  We are strong willed, and have extremely strong personalities, but nothing could have prepared us or in my mind, prepare anyone for this sort of loss. 

With all this being said, I was quite shocked to see the “traffic” and visits to this blog over the past year.  I appreciate your viewership.  I’m not quite sure where I will take my blog now… I hope to come up with something worth reading.  I also begin another blog beginning today on an entirely different website this month, one that I will be monetarily paid to accomplish and I am even at a greater loss of words and ideas for that one, I thought I was ready.  Maybe I’ll update all of you on our progress and possible future with another attempt at having a child.  Until then, Salute!