Leukemia, Lymphoma or Bust?

They gathered all the pathology reports from the past and after a full day of study they have final diagnosis and stage.

Acute Lymphoblastic Leukemia!

That's right.  It is the same diagnosis.  It is just that there is light spreading in the bone marrow.  This changes nothing on the treatment plan.  Their approach is a pediatric protocol, mainly because I am as young as I am, which makes my remission rate at 80% (90% for an actual child).  I will be on a 9 to 12 month regime with my first month being completely in house and the most agressive.  I will then be in and out of the hospital for the next 9 to 12 months and not able to work or go to school. Actually life will be changing in so many ways. 

The chemo began that night (Tuesday, 11/19) with 2 of the 5 chemo regimes entering via I.V. (VinChristine & Doxorubilin). They didn't take long to get in the system and man did they rush through my body quick.  One of them were red and,well, an hour later I expelled some red.  I will count that.  I didn't notice anything in terms of side effects although while injecting the chemo they also injected anti-nausea medication.  

Day 2 of treatment I though was going to be quiet because I thought my next 2 chemo does were going to be this friday.  Well no.  One of them was to be on this day (Wednesday, 11/20).  This chemo injection was preceeded with a spinal tap done down in radiology.  The tap went well and the new chemo went in fine, straight into the spine.  This was chemo 3 of the 5 (IT Cytarabine) and I will only have that one once this round (per month).  This first 2 will repeat every Tuesday for the next 4 weeks.

Today (Thursday, 11/21) was my actual quiet day.  Not that I want quiet days, but after some of the things that happend today I kind of needed it.  I experienced my first major side effect, but in a somewhat small form.  I experienced a major heave, but prevented a spew (HEH......Sorry).  I did prevent it with some deep breathing.  I think the lack or change of the taste buds help make the situation happen.  I was very nervous for dinner because after that episode because my head was swimming and my stomach was on stand by.  I ended requesting some anti-nausea medication and proceeded to eat, but very, very slowly.

Tomorrow I will be receiving my 4th chemo dose (4 of 5) this is a new regime (Pegaspargase) and will only be injected once during this cycle via I.V.  

I am pretty anxious, nervous or whatever, but I have to flat out accept what comes to me and act accordingly.  Bucket next to the bed tonight.

Well that pretty much catches us up on this.  The next posts may be a bit more gapped out.  So just continue to look for email notifcations, facebook posts, or just bookmark the site.

Telling On Myself

So during this quiet period, my mind wouldn't shut down hardly.  It actually hasn't shut down since I was first admitted at Las Colinas.  I was full of questions.  If you walked in that door I talked your ear off (unless I was actually asleep).  Most of you know this is not usually me, but I guess some things come out in certain situations.  One other thing that has happened was something that wasn't too surprising to Jen and absolutely tickled my mom.  I now have a spreadsheet, keeping track of all of my vital signs (ALL OF THEM).  BP, Oxygen, Weight, Blood Sugar, all the way to Fluid Flow.  I initially did this because Jen would ask me just about my BP when they checked almost every 4 hours.  Now, being the person who likes to stay updated and needs some order, I have amplified it.  

I am also doing some things that, again no surprise to Jen, some would shake their head at and maybe even laugh (my mom did again). I try not to be a difficult person, but when you tell me that you are about to so something, even if it is around a certain time, I will hold you to that.  I can be pretty rigid on this and I have come to realize this years ago (With the help of Jen).  So, like the spreadsheet, it was amplified.  The best situation was on Saturday night.  I get 2 groups of people per day one nurse and tech per 12 hour shift.  When I first got here they asked me if there is a time period that I would like to sleep and not be disturbed.  I told them from midnight to 6am.  This was only honored once.  Techs started coming in at 5am.  I was then like ok, that's fine.  I asked them if I can shift it to 11pm to 5am and they said no problem, then Saturday night happened.  

So this tech, whom I met for the first time here at UTSW tells me about what he usually has to do, which was what all the techs did and told me that it will happen in about 4 hour intervals 8, 12 and 4.  Also if I wakeup in the middle of the night, say around 3 I should go ahead and contact them and they will come in and do my vitals right away.  I was like fine.  I wasn't going to waste my energy trying to get a system going again.  So this time I decide to set an alarm so I can be awake before he comes in and wakes me.  I know.........I know, but that is because, I'm Wil.  The alarm goes off and I noticed 20 minutes later, he does not show.  So, I hit the nurses button and when they answer I said, "Vital Time?".  They said, "What was that, Mr. Clark?".  I said "...well the tech told me that he would be in here around 4am to take my vitals for the morning and he is not here.".  He was running behind and will get there soon.  He finally makes it in apologizing, does the tasks and then leaves.  Took me a while to get back to sleep, but I eventually did.  I decided not to make anymore stinks on this and let it go.

Now, I just sleep when I can, they come in and if they can wake me, they can do the task needed to be done.   I actually have not really resistant.  Really!!  

So, that is some of my crazy town ways that came about during the early days here.  Lawd have mercy.  Every time Jen comes in she asks the staff if I have been behaving. (They normally say yes)

I'm so sowry people.............I will get better.

Busy, Busy, Busy!

Alright!  You have survuved my initial installment to this blog.  Lots to say there and I could have elaborated more, but I think that was way more than enough.  Now on to, I will call, the 3rd Phase.

This is not a real phase in terms of the cancer process, but just in this adventure we are experienceing here.  Phase One (March to August 2013), Big Hit to No Confirmation to Follow Up.  Phase Two (August to Late October), Larger Mass to Diagnosis.  Phase Three (November) I crept into some jumping to the actual diagnosis and hospital admission.  This phase will be in several posts and will be about as they happen, but not right now as we are still catching up.

So, we have finally got a diagnosis for this mass, Acute Lymphoblastic Leukemia (Non-Hodgkins B-Type).  I don't remember all of what it is about, but you can google it or something.  It's the most common type of childhood leukemia and treatable but rarest in adults and treatable but aggressive and likes to stick around. I have to admit the Leukemia part really threw me off because I believe it meant a good deal of spreading, but for now we still show no signs of that.  So after being admitted to Las Colinas Medical Center, Irving, TX, on November 11, 2013 I started IV steroids-- purpose was to get the mass smaller and my legs neuro symptoms under control. And it worked very quickly.  It was the first time in a very long time I felt no pain in my back or along the ribcage attached to the T6 vertebrae.  The next day (very early in the morning) this figure appears in my room calling my name.  It was my last oncologist to let me know that I will be going to UT-Southwestern St. Paul, but didn't tell me that this may be the last time I will see him.  I just took it as it is no longer in his and the spine surgeon's hands.  Not that I think about it was like when Obi-Wan appeared before Luke and told him he was to go to Degobah and train under Yoda.  Dork Side - Embrace It!  I felt in a haze like Luke (except Luke experienced more trauma).  

Anyways!

Finally was transported to UTSW St. Paul on Wednesday November 13 to the Bone Marrow Transplant Unit and they got me started right away on tests.  The next three days were very, very busy!  The whole month of November was moving faster than previous months, but this time it was in high gear.  Their main purpose was to do a final confirmation of the diagnosis and stage it.  So I went through bone marrow biopsy, full body MRI, one more full body CT and I was issued what is called a PICC line (kind of like a central line in your chest, but hanging off your arm straight to the heart:

Not sure how well you can see that.

So after all of that craziness and it lasted for hours each day (especially the 4 hour MRI - my poor lumbar), the docs all filed in and gave us some somewhat good news and bad news.  The somewhat good news was that all the tests especially the bone marrow biopsy showed very little to no signs of cancer.  Nothing in my brain (well, yeah), my liver, kidneys, aorta, etc. were fine from the other scans.  The only thing they did find was that the mass on my T6 has all but completely disappeared.  The steroids did their job for the most part.  So again, no more pain especially there.  With the report of no spreading the A.L.L. diagnosis was for now debunked (at least the Leukemia part).  So now they will work get all of the past pathology reports, scans, everything I had done and thoroughly check to diagnosis this.  This made for a long weekend, but at least I was able to rest again.  

Later...........