For those that bash my Youtube channel, read this post then contemplate your actions!
My ecstatic, home-free feelings I've had since I found out I was cured have worn off, especially since I've found out that I have some major issues that I need to plan for.
Now that I am cured, it's time for me
to shift focus to long-term effects of my treatment, one actually being premature death. Not to be bleak but, for me, being cured of leukemia is not the "all-clear" interpretation that it appears to be. There
are consequences, either minor or major, of being cured.
From what I've read on the internet and some credible websites, I've
found out that I have a high chance of facing a life-threatening health
complication within ten years. Most notably from this information I've read, I've determined that I have a 70% chance
of getting acute myeloid leukemia (AML), a 60% chance of getting bladder
cancer, and a 75% chance of getting kidney cancer. I should note that if I do get AML, it's an automatic death sentence.
concern is that I have a high risk of dying from a major heart attack
before I turn 50. There are three reasons for this: the doxyrubicin and
daunorubicin chemo given to me during my Hyper-CVAD treatments, my
consistently high blood pressure, and the fact that I have periodontal
disease and tooth decay. This is unique to my situation meaning
it will probably not happen to anyone else, so don't automatically think
this applies to you if you have leukemia. However, the material I read indicates that all
leukemia survivors have a higher risk of cardiovascular problems.
Next, I have had many, and I mean many CT scans, X-rays, and fluoroscopies in diagnosing and treating my leukemia, MRSA, and pulmonary embolism. I have had 29 CT scans, around 25 X-rays, and 16 fluoroscopies (X-rays in association with all the spinal taps I've had.) As a result, I've been exposed to the equivalent of nearly 70 years of normal background radiation in a period of one year! The effects of all these scans and X-rays to my body in the future is not clear. However, receiving all that radiation in one year at age 35 is unprecedented and carries a high risk factor. It is very likely that I will have problems from it in the near future.
There is more, and this is the most serious.
Because I had sixteen intrathecal treatments (spinal taps and chemo
injections into my central nervous system), because I had numerous
Vincristine treatments, and because I had brain scarring from getting
MRSA in my cranial port, I have a moderate risk of serious brain and
nerve dysfunction. In simpler words, I'm at risk of having serious
mental problems in the future including, but not limited to, memory
problems, loss of motor controls, behavioral issues/emotional instability, and insanity. Due to recent
incidents, I believe the effects have started. I'm emotionally unstable and have severe anger management problems.
this is pretty scary to me but not surprising. During my treatment, I
was basically poisoned everywhere in my body. I was given massive
amounts of the chemotherapy drugs cyclophosphamide, cytarabine,
doxyrubicin, daunorubicin, and methotrexate during my seven cycles of
Hyper-CVAD treatment. I was also given more chemo: fludarabine and
busulfan during the conditioning chemo of my bone marrow transplant, not to mention the excessive radiation I was exposed to with all the CT scans and X-rays.
There will definitely be consequences of all this
that I will, no doubt, experience soon. Again, I will stress that you
don't automatically presume that all of this applies to every
leukemia victim. You just need to be aware of your health and take
care of yourself!
The best advice I can offer is to get regular checkups, see your doctor at least once a year, and get any strange health issues
addressed immediately. You may also want to consider making a will and having all of your affairs put in order. Also, pray and make the most of everyday! If you're a fellow cancer survivor, I would strongly encourage you to speak to your doctor to discuss and plan for possible treatment complications that you may face.
been very fortunate to survive my ordeal and live this long to tell
about it. However, I seriously believe that I am going to face early death, perhaps as early as five years from now. I definitely won't live long enough to see my golden years. A leukemia cure only extends life a decade or two. So, I need
to cherish every day, tell as many people about my story that I can,
and live life to the fullest more than ever. I'll be blunt: I'm 42 years
old, and I'm not expecting to live past 50. If I do, it will just add to
my incredible survival story. If I don't, then I will be with the Lord
sooner. Both outcomes seem pretty good to me. But, the way that things are going for me, I'm hoping for the latter outcome.
With all the bad news stories popping up every day and all of the bad things people are doing, you may briefly think that there are no good people left in the world. It's natural. We tend to let our anger and frustration briefly blind us to the fact that THERE ARE GOOD PEOPLE EVERYWHERE. When this happens, God will always put something and someone in your life when you least expect it, and there is nothing more like seeing good deeds that people do to you to open your eyes to see there is still good in this world!
A very unusual thing happened to me today. First, I will say that I ran out of gas on my way home from church today. In all the twelve years I've owned my vehicle, I have never ran out of gas. My vehicle and I are virtually one! I know every noise it's supposed to make, I know how it drives, and I know when it's fixing to run out of gas. Or, at least I thought I did. I have made it to gas stations with the gas gauge a hair below the E. Today, however, I left church with the gauge slightly over E and thought I would make it to the gas station. Two minutes later I ran out of gas, the engine shut off, and I got stranded on the side of the road. I thought I was in big trouble because I was in an area with very weak or nonexistent cell phone coverage. I then would have had to walk in 90 degree plus heat through a bad neighborhood to the nearest gas station, which was NOT close. A couple of minutes later, a good samaritan pulled up and offered to tow me to the gas station. I gladly accepted with tons of gratefulness. He was a Christian.
A few days ago, I was getting into a mindset that people don't care about each other anymore because of all the bad things I read about and see. God corrected me and got me out of that mindset today. The bad news stories that are out seemingly all the time paint a bleak picture of what evil there is in the world today. But, God reminds us that evil will never prevail. There will always be kind, caring people in this world, like the good samaritan that towed me to the gas station, who are part of that reminder. Don't give up hope!
There is no doubt in my mind that God cured me in order for me to fulfill a great purpose(s).
Last Wednesday, I witnessed a lost soul get saved at an outreach event we have one Wednesday a month, McSpirit Night at McDonalds. It's always a great joy to see a person come to know Christ and get saved. God has a will in everything. Our church decided to start participating in McSpirit Night to get out of the church and into the community to tell people about Christ. God has blessed us and others with this. It has proven fruitful, and I hope we get many more people saved as our church continues to participate in this event.
Today I am excited to post that I reached out to two people about Christ. First, a needy individual visited our church and requested some assistance. We talked and during that conversation, I presented the gospel to him. He didn't really want to tell me whether he accepted Christ or not, and, to not be pushy, I left it at that. I planted the seed, and I was pleased that this opportunity came to me.
Later that day during a Mother's Day visit, I spoke to my grandmother about my battle with leukemia. We got into discussing how I was comforted during my ordeal. I told her it was because that I'm saved, and I knew whatever the outcome I would get to heaven. I asked if she knew Christ and was saved. Her answer was yes. It made me so happy to hear this because in the past I wasn't sure if she was.
These opportunities that God provides are a blessing. If I didn't survive my leukemia, I would not have been part of these experiences. The needy individual, if not saved, probably would have never heard about Christ and be condemned to hell. Since I am still alive and healthy, I know more opportunities like these will come, and I can't wait for them.
Original posting: UPDATE: As of 7/27/15, Moffitt Cancer Center has officially declared me cured of leukemia. It's finally official!
I'M CURED!!!!!!!!! It is now exactly five years since I finished my first chemo treatment and achieved complete remission, all thanks to God! The leukemia failed to return, so according to all the medical texts I've read, I'm cured! My transplant anniversary is on June 9th of next year making it five years since that procedure. Some say that the five-year mark goes by the transplant anniversary, but I think it's more accurate to mark the anniversary from first remission. I'm posting the blog entry I wrote five years ago as a memorial to the rough two months I had in the hospital to achieve this remission. Even though my doctor did not declare me in remission after my first treatment, the blood tests I received all came back negative for leukemia. Therefore, remission was actually achieved.
If this doesn't leave you in awe, I don't know what will: I was on death's doorstep two times (the MRSA and pulmonary embolism both occurring while my immune system was poor.) A leukemia patient surviving something like this is extremely rare. This shows you how blessed I am!
First and Second chemo treatments (March 5 to April 30, 2009)
My treatments involve intense doses of Hyper C-Vad chemotherapy. Because
of this intensity, I require sterile conditions and careful monitoring.
The type of chemo I receive is destructive not only to leukemia cells,
but also to normal, healthy blood cells. These cells get destroyed to a
point that I had to have blood and platelet transfusions to maintain
body health. When chemo is this intense, you can not get it by
outpatient. You have to be in the hospital. In order to make chemo and
other IV infusions more comfortable, I had a central venuous catheter
installed in my right upper arm. The catheter remains there for the
duration of the treatment and allows IV tubes to be attached without
getting constant needle sticks in the veins. This is known as a PICC
line, and it is a blessing! I also had to get several X-rays and CT
scans of my head, neck, and abdomen which is standard for my condition.
Next, I got a bone marrow aspiration and biopsy to confirm my diagnosis.
This went fairly well with very little pain. They even did it in my
room. ALL treatment requires not only chemotherapy to the blood and bone
marrow, but also to the spinal fluid (intrathecal chemo) because it is
possible for the leukemia to spread to the body's central nervous
system. In order for spinal fluid chemo to be administered, you've got
to get injections into the spinal canal in the lower back (known as a
lumbar puncture or spinal tap), or you have to get a reservoir (known as
an Ommaya reservoir) surgically implanted under the scalp that "pumps"
the chemo into the spinal fluid near the brain. I opted to get the
reservoir implanted because my neurosurgeon said it would be a more
painless and safer method of intrathecal therapy. There would be less
chance of infection, also. I had the reservoir for a few days, then
complications developed. The reservoir shifted in position and I
required surgery to realign it. During this surgery, the reservoir
contracted the common hospital infection known as MRSA, a staph
infection that's very hard to eradicate. One night in my hospital room, I
developed a very high fever and became delirious and confused. I was
rushed down to intensive care, the reservoir was removed with local
anesthesia. There was no time to get to the operating room, so the
surgery had to be done in my ICU room. I thought I had recovered and was
sent back to my regular room the next day. There was another
complication, the MRSA formed an abscess on the surface of my brain,
where the Ommaya reservoir catheter entered the spinal fluid. This
abscess caused me to lose some motor function in my left arm and leg. I
had to get physical therapy for about two weeks to regain full motor
control. It was successful, I was using my left arm and walking normally
within a month of the infection. I did not realize how serious this
"bump in the road" was until I talked to the doctors, nurses, and my
family about this incident. I have no complete memory of the night that
the MRSA attacked, just bits and pieces of activities, so it must have
caused some type of amnesia. I constantly thank God that this incident
did not get as worse as it did. If it was not caught as early as it was,
I could have easily died. The abscess was diagnosed as Staph Meningitis
which can be fatal.
The MRSA incident forced me to stay in the hospital much longer than I
was supposed to. So, I had to start my second chemo treatment without
going home for a break. I was still being treated for the MRSA abscess
and was getting heavy doses of Vancomycin, a very powerful antibiotic.
Between the heavy doses of chemo and vanco, I did get pretty sick one or
two times. I got high fevers with nausea and lack of appetite.
Fortunately, it did not last long thanks to all the "rescue" medicines
the hospital gave me. I had to get another intrathecal treatment as
well. This time it had to be administered through the spine. I was
pretty nervous about this because I did not know how painful a spinal
tap would be. I was worrying over nothing. It went well with very little
pain. The procedure was performed in Radiology with precision similar
to a surgery. The injection area is numbed well and the needle used for
the tap is small and less painful. Before the chemo was injected, they
withdrew a sample of spinal fluid to look for leukemia cells. I was
blessed to find out that the fluid was clean with no leukemia present.
The chemo brought my blood counts down pretty low, so I had to start
getting blood and platelet transfusions. I was apprehensive about
getting these transfusions. I have never gotten a transfusion in my life
and was concerned that the blood could be tainted. I was told that the
blood and platelets are carefully screened and irradiated, so the chance
of getting a pathogen like HIV or Hepatitis was extremely rare. I got
the transfusions with no major incidents except for a minor allergic
reaction to the platelets, which was hives. Benadryl took care of this
reaction quickly. It didn't take much time for my blood counts to come
back up to a safe level, and I was discharged from the hospital on April
30. I still had to take Vancomycin through an IV so that the MRSA
abscess could be completely eliminated, therefore I had to make
arrangements for home infusion. I took home IV equipment for gravity
infusion, and it went fairly well. By fairly well, I meant that I did
make a mistake. It was time for an infusion of vanco. I went to get a
bag of the medicine, and I picked up a bag of sodium chloride instead. I
hooked up everything and started the infusion. About ten minutes later,
I saw an extra bag of vanco in the refrigerator and realized I goofed.
Oh well, no harm was done and I even got some extra hydration. The next
week and a half flew by, and I had to go back to the hospital on May 11.
Today, I have reached the biggest milestone I have ever approached. I have lived to reach 40 years old! I survived one of the deadliest cancers a person can get. I can only give God credit for reaching this milestone, and I don't deserve it. I will be even more grateful when I reach another big age: 50. I will be at risk for other health problems and cancers for the rest of my life, so if I make it to 50, I will only praise Him more. I thank God everyday for my blessings, not the least of which is being able to get out of bed every morning. Every day of the year should be Thanksgiving, and Thanksgiving should not focus on turkey or the pilgrims arriving at Plymouth Rock!
Just read this article about the side effects of chemotherapy on the brain. To be honest, after reading this I said to myself, "Uh, oh." After receiving massive amounts of chemotherapy four years ago, including chemotherapy from sixteen spinal taps, I would be lying if I said my brain was normal. I don't concentrate like I used to. My reading comprehension is worse, I have to read sentences twice to grasp the main idea. I leave items laying around and forget where I've put them. In addition, my left arm still does not have 100% feeling after the MRSA incident in 2009. I believe I will be this way for the rest of my life. I just hope it doesn't get worse as I grow older. But, hey, I'm alive. I can take care of myself. I can work hard. And, I'm still very intelligent. All in all, I've made out out pretty well!
Questions or comments about any of my posts? Please send me an email at cliffhanger36@liveDOTcom. Replace the DOT with a period (prevents me from getting spam emails.) Remember that I'm a cancer survivor (and have had it rough) while coming up with your comment or question. Some of my posts have the ability to post comments as well. Look for the "comments" label at the bottom of my posts.