Monday, March 23, 2015

Quite a process

The last few months I have given many people highlights of the process that Steven is going through and what the transplant, and subsequent treatments, consist of.  Obviously, my understanding of everything is limited, but is enough information to get the idea of what is taking place.  I thought, that maybe, I would try to explain that here.

When Steven was diagnosed with leukemia it was the appearance of excess blasts, or immature cells, in his blood that clued the doctors in.  The presence of the cancer was keeping the cells from maturing and doing their job.  In fact, a few weeks prior to finding out the news, Steven actually went to the doctor because a burn on his hand had become severely infected, and resulted in inflammation and swelling to the point that he couldn't bend his fingers.  The doctor prescribed an antibiotic and the burn healed and we were none the wiser. 

Looking back, it was obvious that the healthy cells were being taken over at this time by the cancer, and the new, immature cells were unable to adequately fight the infection that was brewing in his burn.

Steven had also been blaming a cold for causing him to feel short of breath.  However, when his stamina was significantly reduced, and he had to take breaks when carrying gates, he knew something was wrong. 

We now know that the red blood cells that carry oxygen to his organs were being compromised.

At the time, we had no idea what the real culprit was.

****

Leukemia is cancer in the blood.  That much most people know.  Bone marrow, which is located inside of your bones, is what produces the blood in your body.  (I didn't even know that much seven months ago.)

Stem cells, located in the marrow, are what produces the cells that make up our blood.


The chemo that Steven received in September was meant to rid Steven's marrow of the leukemia, and the defect that was producing the cancer.  However, because of the bad cytogenics, Steven's doctor knew that although he could get him into remission, the cancer would return.  It was for this reason that a stem cell transplant would be required in an attempt to save Steven's life.


In St. Louis we found that the first round of chemo did not get rid of the cancer.  Although the chemo initially cleared the marrow, when the marrow rebounded, it rebounded with the cancer intact.

At that time, a more aggressive round of chemo was prescribed, and thankfully, it stalled the cancer long enough for us to return on December 1st, to receive the chemo that would prepare his marrow for the stem cell transplant.  It was, obviously, more favorable to go into a transplant with no signs of disease (cancer) so that the new cells wouldn't have to immediately go to work.

The chemo in December wiped Steven's marrow clean in hopes that Jammie's stem cells would immediately take up residence and make themselves at home.

During the period surrounding the transplant, the doctor made it known that any cells counts that the doctors were reporting were not Steven's own.  The blood he had in his body was blood that came from somewhere else...specifically, a transfusion.  His red blood cell count was, at that point, comprised solely of transfused blood and he received several blood and platelet transfusions while inpatient. 

What I didn't understand until being in this situation is that the white blood cells are not part of those transfusions.  If I would have stopped to think about it, I guess it would have made sense.  White blood cells are our own personal immune system.  Putting someone else's in our body would be a recipe for disaster...at least, it would be in a normal situation.

*****

Two days after Steven finished chemo, his marrow was, essentially, "blank".  At this time he received the stem cells from Jammie.  The stem cells were fed through a catheter in his chest and, because they are really smart cells, they knew what their job was:  to find their way to the marrow and to start producing blood.

As I mentioned before, stem cells produce blood, and blood is comprised of white blood cells...which is our immune system. 

The risk at hand was that once the cells start doing their job, the white blood cells, which are being produced by Jammie's stem cells, would recognize that they were not in Jammie's body and begin doing their job, which is attacking all things foreign.  Steven, which is made up of foreign cells, would be one of those foreign "things".

The matching process finds a person that has a similar genetic make-up, in hopes of lessening the amount of "attacking" that goes on, which in technical terms is called GVHD (Graft Vs. Host Disease).

Steven was attacked by Jammie's cells on a low level, and, thankfully, has never reached anything near the life-threatening degree.  The rash we all prayed for was a low-level sign of the GVHD.  The reason that this was a good thing is that, although the rash was uncomfortable, it showed that Jammie's immune system was working...even though it wasn't in Jammie's body. 

And, Jammie's cells were still fighting even though they were being suppressed by drugs.  (This suppression is to keep Jammie's cells from seriously attacking Steven's body until it makes itself at home.  We want to keep the life threatening effects of GVHD at bay.)

The thought is that a new, working immune system should recognize the cancer as foreign, long after the new cells have made their peace with Steven's body and no longer view him as foreign.

*****

We have been told that the marrow has to be "babied" along for the first year.  It is temperamental.  It is new.  Steven's marrow had originally been occupied for 41 years by his own stem cells.  They might not like being thrown out and might eventually try to crash the new stem cells' party.

This is the reason for the many bone marrow biopsies that will take place this first year. 





During the bone marrow biopsy they insert a "needle" (I use that term loosely.  It looks much more substantial than any other needle I have ever seen.)  into Steven's hip bone.  Once they are able to penetrate the outer layer of the bone and make it into the marrow, they suction out (aspirate) the inner cells.  After getting the required amount, they then measure how much of the marrow is in the hollow of the needle and then pull out a portion of the bone itself.

These things are all sent out to be tested.  This test shows many things but there are three things that we wait anxiously for:

  • to find if there is any "disease" (cancer) present
  • to find whether or not the marrow is still totally engraphed with Jammie's cells
  • to see if the genetic marker (the one that drives the cancer) is present
This past Friday we found that there was no disease, the marrow WAS totally engrafted, and the genetic marker, still wasn't present.

We couldn't have asked for better news.  It has answered so many prayers.  However, we know that even though it is 100% engrafted now, Steven's cells could still try to take over.  (We don't want that.  Steven's cells apparently invite cancer to the party.)  We know that although the cancer is not there, it could decide to come back.  We know that the absence of the genetic marker is HUGE, however tomorrow is another day.

BUT, we also know that God has brought us this far, and by His mercy and your prayers, we have made it 100 days cancer free.

I pray that Steven can soon come off of his immune suppressants and that Jammie's cells aren't too upset about their new home.  I am ready to let them go full force against anything that would try to harm my husband.  They've already proved their tough by remaining totally engrafted, even while being pulled down by drugs, and I can only imagine what greatness those cells have in store when they are allowed to come fully armed into the fight.

Please continue praying for us all.




Wednesday, March 18, 2015

Holding it in

As you know, yesterday was Steven's "100 day" bone marrow biopsy (even though it was technically only day 97). 

I have written before about my heightened anxiety when going to the doctor's visits. It seemed as if, for the longest time, every visit was laced with bad news.  If the doctor gave us good news, it was always attached to bad news.  Or even just the possibility of bad news.  The doctor herself was upfront with us, and, back in October, stated that she was someone who always looked at the "worst case scenario" and prepared for that. 

I. Hated. That. 

At a time when all I was searching for was hope, she gave me none.  Or, maybe I should say, she gave me very little.  She threw around numbers and percentages, and she was never very optimistic about his chances.  More often than not, our conversations resulted in tears.

*****

Since Steven's transplant, I have noticed that along with the gradual return of his strength, he has also had the full blown return of his personality.

Steven's sense of humor was the first thing that drew me to him 22 years ago.

Actually, that's a lie.

It was his eyes that first drew me in. 

But, honestly, it has been his sense of humor that has kept us going for 22 years.  No one can make me laugh like him and it's the worst when he makes me laugh and I really don't want to.

That happens a lot.  Secretly, I am thankful for it.

Regardless of the million things I have on my agenda, or my mental to-do list, Steven's sense of humor can generally make me stop...and lighten up a bit.

*****

I think Dr. Jacoby is a bit like me.  (That's a tough pill to swallow, but I believe it is true.)

I find that I, too, look for any possible problem and try to come up with a solution for it before it arises.  I want to prepare for disaster.  I want to be ready.  I want to be strong when I'm hit from behind. I want to take a situation, dissect it, evaluate it, and turn it over in my head a million times in an effort to steel myself against any impending blow.

And now I realize what a drain it must be to be around me. 

Steven's humor constantly temps me to "let go", and at times, I do.  Even when fully immersed in the "mom role", or the "wife role", there are times that I find myself laughing at him, generally over something he has said or done, in that comically dry, inappropriate way that Steven has.

He draws people in.

As quiet as he is, he has an effect on people and once you've gained acceptance into his circle, you are his friend for life. 

His doctor wasn't immune.

For months she met us with her stern style that was hid underneath a certain, almost apologetic, meekness.  However, with each visit (post transplant), she has been becoming softer to, and almost enamored with, my husband.  It's not hard to see why.  I am certain that he isn't her typical patient. 

Steven isn't a "typical" anything.

A couple of months ago Steven began greeting her by her first name when she entered the exam room.  "Hello Meagan!", enthusiastically met her when the door would open. You could tell that she was unsure of what she should think, but was unable to keep from smiling, despite her best attempts.

One time, when seeing her in the hall, prior to our appointment, I mentioned to Steven that she had highlighted her hair.  That day, when she entered the room, not only did she receive a "Hello Meagan!" from Steven, but also an "I LOVE what you've done with your hair!" 

I think that is when the ice started showing some serious cracks.

It was that same day, after another compliment about how young she looked, that we were allowed to space out our visits to every two weeks.  Either she really liked Steven and wanted to see him happy...OR she wanted to see him less.  Either way, it worked to our advantage.

Each visit, lately, has been much the same.  Steven, after making sure we were at least five minutes past our appointment time, would leave the exam room and go looking for her in her office.  At first I am sure she was taken aback by his audacity, but now she laughs and says, "I'm coming, I'm coming!", I believe almost waiting, and expecting, to see his face peek around the corner.

Yes.  She laughs.

Even when she doesn't want to.

Sounds familiar.

*****

Yesterday was the first visit that we have had in which there was nothing negative reported to us by Dr. Jacoby.

Nothing.

His labs looked good.  He looked good.  His oxygen was good.

She even discussed removing his central line catheter once the bone marrow results came back which would be Friday or Monday.  It was almost as if she expected the results to be good news. Although I realize that she didn't exactly say it, these days it is what she doesn't say that I listen the most intently to.


*****

Speaking of enamored...

 Yesterday, Steven and I went back to the room where the bone marrow biopsy would be taken.  We were immediately joined by a somewhat gruff nurse that started making preparations for the biopsy. A little rough around the edges, you could tell that she could dish out as well as she could take it.  She immediately started hounding Steven and giving him a hard time for various things.  He was balancing between not being amused...and being impressed with her gall. 

I think her dry sense of humor was sounding a little familiar to him.

As she was going back and forth, trying purposefully to rub him the wrong way, he piped up, "Why don't you just get out of here and go get my medicine?"  and then he laughed at his own nerve.  She got tickled, knowing she had gotten the rise out of him that she had worked so hard for.

Almost as a peace offering, she brought him back in a shamrock necklace and bracelet, "for good luck" to wear during the procedure, and told us that she would offer her prayers as well.

*****

After having seven or eight biopsies, Steven has become accustomed to the drill.  Thankfully, he hasn't had much pain associated with them, but has enjoyed giving the nurses a hard time, yelling out random things such as "KATY PERRY! That hurts!" during key moments, reminiscent of Steve Carell's, "Kelly Clarkson!" outburst in the infamous movie. 

Yesterday, however, Steven had more pain than usual.  I only knew of the discomfort by watching the strain on his face and the gritting of his teeth and hearing the sharp intake of his breaths.  I held his hand trying to comfort myself, as much as him.

In true Steven fashion, the pain didn't stop his sense of humor.  During a particularly painful moment, when she was trying to extract the core (the bone) from the biopsy site, Steven decided to yell out, "ADAM LEVINE!"  I'm not sure who was more shocked.  Me, or the nurse.

Once again, I found myself laughing...even when I didn't want to.


*****

Please pray that all good signs are pointing us in the right direction and towards God's ultimate healing.

Monday, March 16, 2015

I guess I am managing

When I logged on this morning I noticed that a month had passed since I had last written anything.

A month.  We have been home a month.

Since we have been home the time has flown by, and has been filled with ups and downs, and twists and turns.  Honestly, I sometimes feel as if I am on a rollercoaster and am screaming for someone to stop the ride and let me off.  They never do.

However, other times...?

Well, other times I feel almost normal.

*****

I  have found that my biggest struggle since being home is managing Steven.

Yes.  Managing.

Some people manage wealth, offices, farms, interests, etc. 

Me?  I "manage" my husband.  Or, at least, I try to.

I am so very thankful that he feels well most of the time.  Truly, I am. It was terrible seeing him sick and I hope to never see him in that shape again.  Ever.   It killed me.  However, the down side of him feeling so well is the fact that he thinks he can do anything. 

Steven is apparently suffering with memory loss resulting in poor decision making. (My tongue is in my cheek while typing that.) Knowing him, he would probably blame it on "chemo brain", but I have found that it selectively occurs.

A couple of weeks ago, when visiting his physician, Steven pressed Dr. Jacoby, questioning when he would get "the ok" to return to work.  The physician stated that returning to work generally isn't even discussed until around day +180 (Steven is at day +96), and she specifically told him they would wait and reevaluate at that time.  I am not even kidding when I tell you that as we walked out into the hallway, leaving his appointment, Steven turned to me and said, "Sounds like I can go back to work..."  (Insert: palm to forehead.) 

I, in no uncertain terms, assured him that he COULD NOT.

Last week, when having his labs drawn in Springfield, I for some reason was drawn to ask the tech what Steven's pulse/ox was.  I have never been concerned about his level in the past, but, that day, I needed reassurance that it was alright.  It was 92%.  (In St. Louis they put him on oxygen at 92%.) I made a mental note and knew that I would be checking it again at home later that evening.  That night, the level had fallen to 91%. 

I knew that he was planning on taking a friend to the eye doctor, in Rogers, AR, the next day.  The trip alone was not something that I was hip on, considering that we still, technically, were supposed to be living in St. Louis, close to the hospital due to instances such as these.  In my mind, being five hours away from the facility probably wasn't the best idea.  However, against my better judgment, and considering he had been feeling really well, I hadn't protested too much, knowing that I needed to choose my battles. 

The evening before his planned excursion, when noticing the downward trend, I mentioned that he might want to call his friend and tell him that he should get another traveling partner, just in case something came up.  Steven refused.  The next morning when his oxygen was 87%, I was sick at the thought and told him that I would be calling the nurse.  His reply?  "I figured you would" as he headed out the door towards Arkansas.  (Yeah.  Another palm to forehead.)

As suspected, the physician in St. Louis WAS alarmed and wanted Steven to be immediately seen.  I explained that he was hours away and that, at best, he might be in Springfield later that afternoon.  She wasn't amused.  After speaking with multiple nurses, a plan of action had been decided, and a trip to urgent care, where he would be escorted immediately to the back into an unused room, was on the agenda once he returned to the area. 

In urgent care, after several tests, it was determined that he had two viral infections, both respiratory in nature, and also, a possible adverse reaction to a drug he was taking.  The urgent care physician asked Steven several questions about his medicines, treatments and care, all of which Steven referred to me, because he simply didn't know the answers.  (And yet another palm to forehead moment.) 

The urgent care physician told Steven that St. Louis was leaning towards having him admitted...in St. Louis.  My heart sank and, honestly, I didn't know if I could go through it all again.  I felt so defeated.

I also felt completely aggravated with my husband. 

Yes.  My husband.  The same one that has been sick.  The same one that I have fought to protect.  The same one that I have loved my whole life.  The same one that destroys me at the thought of losing.

And, then, I felt guilty for being so aggravated with him.

"St. Louis" agreed to hold off admitting him pending the lab results.  When speaking with the nurse the next day she told me that it was only because of me, and my attention to his condition, and regimen, that they would allow Steven to stay home.  Although I was so relieved at the knowledge that we wouldn't be immediately be readmitted, I again felt the weight of the responsibility that seemed to always fall on my shoulders.

It was/is Steven's life.  I still can't fathom why he hasn't taken control and taken the reigns of his care.  My only thought is that he knows that I will.  We both have been inundated time after time with doctors that tell us how dire, and serious, his situation is, and will be, until his immune system is back up and firing on all cylinders.  I'm not sure what else it would take to get him to take it seriously.  But then again, I wonder what he hears when they speak.  Maybe his mind, in an effort to protect him, refuses to acknowledge where he is in his life right now.

He once told me, "When I see things on television about cancer, I never think that it applies to me.  I refuse to."

And maybe, just maybe, that is the "mental medicine" that Steven has chosen to take.

*****

I am not writing this to paint Steven in an unflattering light.  I love that hard headed man dearly and whole heartedly.  Instead, I believe it is through these experiences that I have been given more insight into what it is to be a care giver.  In the past, I have always thought about the fear, and sadness, they must have at the thought of possibly losing their loved ones.  But what I didn't realize is the struggle, the battles, and the weariness of the battle.  I never thought about the fact that you are not only a mom, dad, husband, wife, sister, brother, son or daughter...but you are a nurse 24/7, and on call at all times, and the toll that takes on everything you do.

The mental and physical fatigue weighs on you and those around you.  Like others, I am trying to do what I know is best for Steven, taking the knowledge given to us by doctors and nurses who are well versed and experienced at dealing with this disease.

We, on the other hand, are not well versed.  We are learning.

We have to trust in those who have gotten us this far: they've been there and they've done that.

As I sit here I can't help but draw the parallel between our situation, and God's relationship with us.  How many times do we not do what we are told, by God, to do?  He knows what is best for us.  Always.  He tells us with a gentle nudge, that sometimes grows more forceful.  He also allows us to go against our better knowledge and find out for ourselves when our decisions aren't in our best interest.

He sees my frustrations.  He sees my fears.  He calls for me to be more understanding. He calls for me to trust in Him, the one that has gotten us this far.

And he "gets it". And me.

While at church a few weeks ago, a verse popped out at me:  John 2:25

 "He did not need any testimony about mankind, for he knew what was in each person."

While I think it is safe to say that God did know what was in each person because of the simple fact that he is, after all, God, and he made us, I think that as the priest pointed out, he also knew what was in each person because he too, walked this earth wearing very human clothes, human nature, and human temptations.  Just because he didn't weaken, and fall to sin, doesn't mean he didn't look it in the eye. 

He knew what was in them.

He knows what is in us.

Steven's stubbornness, my anxiety.  Steven's determination, my weakness. 

And, it's possible, while watching over us, that He still puts an occasional palm to His forehead and shakes his head.

*****

Please continue to pray for Steven and our family.  His "100 day" bone marrow biopsy is tomorrow.  I pray that the results show continued progress towards complete and total healing.  I would appreciate if you would too. 

Love to you all...