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.
16 May 2013
04 April 2013
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.
01 February 2013
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.
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.
16 January 2013
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 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.
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.
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 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 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.
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