Holding up after The Intense Treatments

Today I thought I would make today’s post a dual purpose post.  First, I will give a quick update on my health.  The second half of the post I am going to address a question from yesterday’s post on how I am holding up after the treatments.

Health Update

Well the gvhd has continued to behave over the past week so I will be starting another taper today at 90mg.  Hopefully soon I will be posting a 0mg update, although that will be many weeks away

As most of you know I have been battling with a cough for the past month or so now. We have run many tests to make sure it is not an illness.  So far all tests have come back negative.  Today I had another CT scan of my lungs just to make sure everything looked good, which it did.  The doctor was really happy with how my lungs looked.  He said my cough could maybe be caused by my windpipes being a bit inflamed so he is having me try a puffer twice a day to see if this helps.

I found out today an explanation why I have been much more exhaustion over the past couple weeks.  Our bodies produce steroids naturally.  Once you start high dose steroid treatment for extended periods of time our bodies stop producing the steroids on their own.  Once you begin to taper the steroids your body doesn’t start producing its own steroids right away.  This causes you to feel tired because your body is not producing its own steroids or getting them from pills.

Holding up after the Treatment

Someone asked a question how I was holding up now after going through the intense treatments.  I figured since the update was super short this week I could address this a little bit and explain a bit of what the recovery was like from treatments.  

The imagery I used for to illustrate what the in hospital treatment was like could be considered a little hyperbolic but the treatments were so intense it justified such strong imagery.  One of these days I will do a post to give a more detailed description of what it was like actually like going through these treatments, but let’s just say there was a lot of laying in the fetal position, eating only popsicles and a couple days of morphine J 

Don’t feel too bad though, if there were records to be broken for healing, I am pretty sure I would have broken them in both my induction and transplant hospital stay.  For both rounds the nurses were flabbergasted with how fast my body recovered and rebuilt itself. In both cases my blood counts were all back to normal levels and I was discharged before day 20.  Most patients are in the hospital for a minimum of until day 30, and many times extending into day 40 and beyond.

From a physical standpoint I have responded very well to the intense treatment without too many side effects.  So far the only major physical side effect I have had is my long nerve endings have been damaged by one of the chemotherapy drugs. This results in my toes are always being numb and feeling cold.  There are obviously other side effects but the cold toes are the only thing that affects my day to day life right now.

Well I hope that gives a little insight into how I am physically holding up after the intense treatments. As always comments are always welcome but if you have any specific questions please feel free to ask.

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We really are put on our deathbeds in treatment

In a couple of my posts I have referred to me being close to my deathbed last year.  To many people reading I am sure they look at this is a hyperbole used to emphasize my chemotherapy treatments.  After all, we have all known people going through cancer, and although they look horribly sick when going through their treatments, they are definitely not on their deathbeds. 

I thought today I could clear up a little of this confusion and shed some light into deathbed treatment we have to undergo.  First is first, Acute Leukemia is very different than other forms of cancer.  Most forms of cancer are localized to one area that can be treated with localized methods.  Leukemia is a cancer of the blood, so as soon as one cancercous cell pops up in the body, the Leukemia has already spread to your entire body.  There are no stages to Acute Leukemia, well I lied, there are two stages.  There is the good stage in which you don’t have Acute Leukemia and the very bad stage where you do have the disease. 

My particular form of leukemia is extra nasty because my cancer doesn’t just stay isolated to my blood stream, it can move throughout my lymphatic system as well.  This means that it can cross the blood brain barrier in my central nervous system that regular chemotherapy can’t get to.  This is why I have had to undergo so many lumbar punctures to directly inject chemotherapy agents into my spinal column.

So how do you kill such a nasty little enemy like leukemia.  Well the doctor’s literally inject you with poisonous chemotherapy agents until they put you on your death bed.  Acute Leukemia is the only form of cancer where the treatment requires a round the clock hospital stay for up to a month. 

Someone in our family is going through cancer right now and he had this wonderful analogy on chemotherapy that I thought I would share to help paint a better picture.

“It’s like fighting a war in which my army needs to retake a city they have lost to a bunch of terrorists. My army can’t retake the ground alone. So we hire “mercenaries”. The mercenaries are good but they are ruthless killers. They kill anybody that walks or talks or looks like a terrorist. They kill innocent civilians and take no prisoners.”

In this analogy, the mercenaries are the chemotherapy drugs.  They are wonderfully effective at destroying cancerous cells but they don’t distinguish between good and bad cells, they just kill them all. 

I still haven’t explained the death bed part.  Well with Acute Leukemia being in the blood, the “mercenaries” are given the orders to carry out their relentless attack on the blood systems of my body.  They literally kill my bodies ability to make blood to the point where I require transfusions of blood just to stay alive during the treatment.  The transfusions keeping you alive isn’t even the scariest part, your own army (your immune system) gets attacked and destroyed by the mercenaries as well until there is nothing left.  So once the mercenaries are called out of action, your body has no army left to protect itself from foreign diseases and illnesses.  I liked to call this period my sitting duck period, because you literally felt like a sitting duck while you wait for your body to rebuild.  This is one of the most dangerous times to be a Leukemia patient because simple illnesses can wreak havoc and even cause death to a patient.  What I have described here is the the induction therapy phase.  In it they attack and destroy your city until it is almost completely destroyed but leave a little left so eventually your body can rebuild its city and the blood lines and your blood cells replenish and start producing again.  That was deathbed #1. 

Deathbed #2 came during my bone marrow transplant.  This follows pretty much the same principals of induction therapy with using the mercenaries to attack the blood lines and reduce them down to their lowest levels where you are required to be supported by donor blood.  But this treatment protocol has an additional attack procedure,nuclear bombs.   Your body is bombarded with nuclear bomb attacks (radiation therapy) to effectively destroy every piece of bone marrow (your city) in your body.  In my case these attacks were relentless and occurred twice a day for 3 days straight.  These nuclear attacks combined with mercenary attacks completely destroys your city (bone marrow) and every immune system army cell you have.  Unlike induction therapy, your city has been destroyed beyond repair and cannot rebuild itself.  Without a donor’s help you would literally not survive this procedure. 

This is why I now call December 22^nd my second birthday, because I was laying on my deathbed having just finished the attacks on my body and that was the day I was given my new “city” and my second life.

I hope this post shed some light into the intense chemotherapy treatments Acute Leukemia patients have to undergo and how it is different from other forms of cancer.  I would love to hear your comments and will do my best to answer any questions you may have.

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