Warning...........May Be Graphic

Ok.  It had been a bit, but I will get out this post before my body says no mas for the night.  Don't worry, this post will not be as graphic as the recent Scandal episode (LAWD......That was hard to watch with this chemo!)

So my day actually started out pretty great.  In fact, this had been the best I have felt for the past 4 days.  My legs are cooperating (meaning no crazy weakness or tingling) and the nausea is a little more in check.  The docs finally came in for their rounds late in the morning, I told them how I was feeling and they said, "Good!  Because it starts all over again.  Bringing ya down."  I knew this anyways because it is chemo day!  

We start back with the first 2 I had last week, VinChristine and Dox.  I'm starting to learn the big side effects of some of these chemos and definately with these two, my pelvic region is really effected moving into weakness in the legs and tingling in the feet.  Very irratating.  The Dox also, like last time, flushes right through me within a couple of hours (I know this because it goes in and out, red, but it does not hurt).  

A new chemo was introduced as well, Methotrexate, which was introduced via the spine.  This was just like the Cytarabine last Wednesday, but that one will only happen once.  This new one will be injected one other time on December 17th, which will complete the full/aggressive round of treatment.  I am convinced that the chemos through the spine are the ones that produced the strong dry heaves about hours after injection, but only happen once of twice.  

Only one other time did these heaves continue and that was a day after I was introduced Pegaspargase via IV this past Friday (2 hour drip).  I was literally convulsing and very little came out.  I even called out for help, but managed through.  I think, that this chemo was the absolute worst of them all and thankfully will only be given once per round.  Hopefully never again.

So those are the 5 chemos I am currrently on and the common side effects of them.  I also get chapped lips, dry mouth, crusty nose, dry skin, dizzy spells, drool mouth, diarrhea and headaches.  These are far in between, but they do happen. 

So, that is my ordeal for now.  I have yet to face the infamous neutropena where everything drops to 0 including my immune system.  Curious, but not really looking forward to it.  They say each person reacts differently to it, so we shall see.  For the most part, I should be extremely exausted.

Oh, for the nausea I am on 4 different types of anti-nausea/anti-anxiety meds including the patch most people wear on cruise ships.

Working well for now.

Until next time.........

Life on the outside

“The wound is the place where the Light enters you.”   Rumi

Jenny here. Two weeks ago tonight we were in the ER awaiting a room, three days after hearing the diagnosis, but after weeks of Wil being in constant pain. To say there wasn't enough time to process it all doesn't even give the experience justice. But I'm not melting down on the way home now and I'm eating and sleeping again. My own little steps in the journey. 

I work hard in life. I'm a mover and a shaker, always trying to get us into a better situation.  It's how we ended up at UTSW. I push and advocate for clients and, in this case, for my sweet hubby.  I put people first. I'm a helper. 

But theses days all I really want is to sit and be with Wil. My extroverted self doesn't want crowds of people or the excitement of work.   I'm happy and content in the silence of his room. But sometimes days have to go by in between being there so I can make it to my 3 jobs (part time and contract work is great until you have a life crisis and have no PTO and no FMLA).  And these days I'm learning to be humble and allow others to help us when they can. It really hit home when I met the weekend charge nurse...a former mother of a child I saw for over a year when I worked in Early Childhood Intervention. She saw me, gave me a big hug, and said "don't worry, I've got you."  What a strange shift in the helping relationship.  

I can't imagine how it is to be on a locked unit of 18 rooms 24/7.  To be poked and prodded all day long. To feel pain. To feel weak. To work up a sweat walking the hall and feel like you ran a marathon taking a shower. I'm so proud of Wil's determination. It's a swirl of emotions every day (yay! He ate jello! to seeing my strong guy lose 7lbs in one day). There is such beauty even in the brokenness because we really do have such an amazing relationship. But it's hard. 

But life on the outside is a real mixed bag too. People surprise you. Whether it's calls or gifts from those you haven't spoken to in a long time, offers of help for the caring for the puppies, or visits to Wil because I can't be there all the time...but also to the heartbreak of silence from some you'd expect to see/hear from or the uncomfortable interactions (sometimes avoidance of even eye contact) or being told the craziest things you can imagine about how I should feel or act. Some days I feel like cancer is contagious and I have it too.   I'm not sure if illness changes relationships or just reveals them. I get that it's hard to know what to do or say. I know people's lives continue on as we fight.  But even the smallest thoughtfulness or validation means so much some days. 

Wil's prognosis is hopeful. I've moved past some of the intense fear of losing him (if you know my growing up situation with my dad then you understand Wil being sick is facing my worst nightmare becoming reality) to general grieving the life we once had (this week is especially hard as today would have been our first day in MN with my family after several years).  Logically I know our lives have changed forever. Stress wise I can feel some of the challenges to daily life already (I keep thinking 3 years. 3 years. I don't usually even stay at a job 3 years!).  But really, it's just all too much to process, too many unknowns yet to plan more than just a few days or weeks at a time. 

I hope people can be patient with me as I try to figure out how to sanely balance life on the inside and outside worlds (we are expecting periodic hospital stays this whole first year. "Disabling" is how they framed the treatment). I hope I can also be patient and kind to myself (day three I'm driving home sobbing because I don't have a handle on everything yet...I'm very silly and expect too much from myself). I hope people will join with us in the long haul. Because as independent as we are, I know we can't do it alone.  

Let the light enter. 

LJB

Day 13.

Cannot believe it has been 13 days.  You wouldn't think time would fly so fast being in one place for so long, but it does.  Even when you are doing nothing in that place.  Oh well, I will continue my focus in fighting this and keeping my thoughts & prayers strong (and trust me it gets tough to do).  BTW, I want to thank you all for your positivity, prayers, vibes, words and visits.  I really do feel it all coming in.

I wasn't sure how I wanted to start this blog, but I guess like that previous paragraph (heh).  I wanted to type it up yesterday, but after a great visit from my wife, Lindy and A.J., my body and my emotions, I guess, were overwhelmed (no fault on them). I ended falling out at around 9pm, earliest ever, and I feel better now.    

For those of you who have not seen this tattoo, it is in dedication and memory of a good friend who lost her battle to Esophageal Cancer I believe 5 or so years ago.  She was 42.  I had only known her a few years, but she was one of those people that when you met her, you didn't have to know one more thing about her (or at least I didn't) because now she was your friend. You loved her or you hated her.  This lady carried such a strong attitude (great attitude), very similar to my wife and some of the other ladies in my life.  These are women when they say "I got you", they do!  I think I named her my big sister.  Like my two bilological sisters, she was my cheerleader.  She noticed things that I do and would wonder out loud to me why have I not incorporated my talents into a business or something.  I'm sure she would be fussing at me even now.  In fact I think I feel her eyes beaming down on me as I am typing.  She was really amazing.  

When she was battling the cancer, I didn't have to, but I saw her fairly often.  I even asked Jen if it was cool if I went to see her without her.  I know it sounded silly, but that is how I am.  It was great to see her.  She was in good spirits, we had a great time, talking, playing games and looking at LOLCATS (my first time introduced to that).  Being a person who also likes to observe and learn I tried to take in all that she was going through without bombarding her with questions, and of course it was a lot.  Now I know, I only knew maybe 20% of what she was going through.

Before she died, Jenny and Heather researched and got tattoos in honor of her spirit in life.  At her memorial service, Cynthia and I decided to follow suit and get them too. The ladies all got theirs on their right instep and me on my shoulder. In kanji symbol it means "Tenacity".  That was Lisa Jue Bishop.  She never new the definition of backing down, giving up, or stopping. For herself or anything or anyone she loved.  And I feel that even though she lost to this demon, she was giving off some more good shots and cussing it out as she fell.  

I now hold this as my crest, my shield.  In honor of LJB and off of those (friends and family) who faught this fight.  I will win this.  I have too many survivors around me and one amazing guardian angel.

Until next time.........

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...........

The Journey Begins

Hello folks.  Jenny and I, have been smacked hard in the face with one of the worst ailments--one you would never want-- cancer!  This post will be just a brief (maybe) overview of the 8 month process that led me to UT-Southwestern St. Paul University Hospital in Dallas, TX.

Back on March 6, 2013 (I remember that specifically and I think it was a Wednesday), I got up and felt one of those knots that usually tells you that you may have slept wrong on you back or something.  So, I didn't pay it too much of mind, took some tylenol and proceeded to start my day.  Got ready and headed off to work.  As I drove down the road I noticed the pain of the knot (which was actually directly in the middle of my back, which is unusual because knots like this are usually on the side, like the shoulder blade or something) got larger and spread across my back in a straight line all the way around to the front, stopping short of my sternum.  It reached that point when I finally arrived at work and it stayed.  I don't know how I handled that drive, but I did.  I could not work though because after getting out of the car I could not stay in one position without the full pain returning.  So, I was allowed to go to my doctor, who was close to my job, thank goodness, and had him check me out.  I guess I couldn't describe the pain well enough, but after an x-ray and CT he decided to recommend me to an Spine specialist because a mass was found on my T6 vertebrae and it looked like the vertebrae was compressed or something.

So now the next 8 months.  This was the toughest part of the process, for now, the whole 8 months.  Keep track of the positions in the months.  In Late March we finally got in to see the spine specialist and after an MRI it further confirmed the mass and suspicion of Lymphoma was made.  We then were referred to an oncologist to meet and schedule a spinal biopsy (Mid-April).  When we got the results back we were informed that the biposy was compromised and had too little tissue to confirm anything so I went through a full body CT to check the lymph nodes and an ultrasounds to check things like the spleen, arorta, liver, etc.   The ultrasound checked out ok, but the CT showed a few enlarged nodes that recommended a biopsy.  This biopsy (Late May) was done by a Thoracic surgion that seemed a bit smarmy to me, but we dealt with him.  Results showed no signs of cancer in the nodes so, for now, cancer was off the table.  

We were told to return in late August to do another full body CT to recheck the nodes for further enlargement.  It showed the nodes being the same, but the mass on my vertebrae had grown twice in size.  So, let me back track here.  During the summer we returned to the spine specialist and he prescribed physical therapy to help strengthen my back.  Up until this point the pain I was experiencing had all, but subsided, but in July, it came back at 50 to 60% of the force it had before (I think).  Enough to inform the spine surgeon.  They prescribed me steroids and said for me to keep up with the PT.  So I took them and I tried to keep up, but the pain either stayed there or grew.  Back to the oncologist and the CT, we found that mass had doubled in size.  So, around six months later.

The oncologist recommended another MRI (Late September) which confirmed the growth and then referred us to a radiology interventionalist.  We saw the radiologist in Late October and then had another spinal biopsy a week later, got a really good sample this time and it was confirmed that I do have something going on with Lymphoma (November - 8th Month).   Oh, side note, remember when I said that a break happend?   The interventionist informs us that it did not look like the vertebrae or any other part of the back was ever broken.  Just a mass was there that was now spreading around the vertebrae and squeezing the spinal cord, but no break or compression.  When it did press, I knew it.  

So for a week I was stricken with intense pain at home, recovering from the last biopsy when I was experiencing numbness and timbling in my legs and toes.  Now this is something the interventionist was asking me before during the consultation and at that time it was not happening, but it did later.  For some reason I thought it would pass and the following Monday I decided to head back to class.  Walking was different, but doable.  Going up and down the stairs were the trigger.  I had to use railings all the time to maintain balance, but one stairway (wide one) I went up as if it was nothing and all of a sudden my legs decided to cross in front of one another on their own.  I had to stop myself, focus and make each leg move right (this was only on the strairs).  I was on the phone with Jen as well and she convinced me to call the oncologist and inform him of what has happened.  We went from prescribing more s                  teroids, to another doctors visit to, "let's get you to the ER!" in one conversation.  Come to find out that the mass was squeezing so hard that communication was seriously being disrupted.  After being admitted, I saw him one last time where he tells me that we are going to UT-Southwestern and they will take the case over.  This was Jenny's goal all along, but it took a lot a think for the oncologist to go with it, but he did.  

2 days later I am at UTSW - St. Paul.  Let the healing begin!

Sorry.  That was longer that was planned, but I wanted to tell a story I guess.  Hope I didn't bore you.

More posts to come!