John was In the hospital a lot recently

My husband, John, has been in the hospital a lot recently. I've lost track of the number of times, but I think he's had six hospitalizations in the past few months. 

His immune system never came back after his bone marrow transplant. He's just one of the few who had that complication. So he just keeps catching things this year, even with his IVIG treatments. I guess his IVIG treatments -- 9 hours at a time in the chemo room --  just aren't enough to keep sickness at bay. His cancers are definitely NOT back -- he just hasn't quit catching things this year.

Three of John's hospitalizations were for graham negative and graham positive infections.

During the last hospital stay John actually got sepsis. He had a graham positive infection in his blood.

The doctor took me aside and told me there was a chance John wouldn't make it. She went over to his bedside and explained to him that he must fight very hard. She sort of explained the situation to him.

Her telling John the truth of his situation really surprised me, as I am not used to John's local doctors, as a whole, dealing with us in such a straight forward way. I was most grateful, however, for her straightforwardness, as was John. It allowed John the information he needed to have to fight, and the ability to do so if that's what he chose to do.

I explained to him a little more of what the doctor had said to me while he had been sleeping. "Krissy, I'm going to do it. I'm going to fight," John said to me, looking at me weakly, but in his determined way.

"OK," I said. "I'm going to be quiet then, and let you go into your survival mode, and do whatever you do when you do this, then."

"OK," John said quietly.

"I love you, Honey," I said, and gave him a quick kiss. Then I leaned over and drew a little cross on his forehead. "Good night."

"I love you too," he said. "Good night."

Then he quickly shut his eyes, and with a very determined look on his face, John slipped off into that "survival zone" he goes to when he fights to stay alive. I've seen him do it many times before. He's working hard to stay alive there in that place. Nobody can distract him from that task. Nobody can reach him there until he's ready to come back. Not even his wife. I can't distract him there. He can't hear me. But somehow I think he knows I'm at his bedside.

I have no desire to distract him when he's fighting to survive. He needs all his energy. When he's fought himself safely through he'll be back to talk to me. I can wait. I always wait. Because it's always worth it. Do what you need to do, John, until you're done. Whether you're awake or asleep -- stay in "the zone". I can wait. I always wait.

So I wait for him to come back. To let me know he's going to live. And like each time before this one, he does a stellar job again. Just because he wants to live. Which is more than reason enough.

But I think I made it all sound too easy!
It was scary when he was first sick. In my heart I knew he'd make it, but sometimes I was a little scared.

The first night John's temperature shot up so high that they put him under a "cooling blanket". It was basically a sheet with ice packs sewn into it. He was under that thing for about a day.

At first John didn't respond to any antibiotics they gave him -- I guess the graham positive infection, which had since become sepsis (blood poisoning), was now antibiotic-resistent. But then after a day or two the doctor found an IV antibiotic that worked. Dactomycin.

So after several days of Dactomycin, some time under an ice blanket, and lots of old-fashioned just fighting to survive -- John was good as new.

Except you're never as good as new after these things. It always takes a toll on you. And you need some time to recover. From something or the other. John's latest something or the other is something called "encephalopathy". He got it as the result of the sepsis. It effects his cognition. But that's a subject for another post. That post will come soon enough. I think I've already given you more than enough to read about for today!

I just wanted to let you all know what's going on. I'll keep you updated.

I hope everyone is doing ok. Thanks for continuing to read and comment. God bless you all!  :)

Maybe John has Cancer Again

It's going to be another trip to Hershey, PA today --  tomorrow my husband John will be seen in the Hershey Medical Center, Cancer Clinic.   

A few things are going on with John physically.  And it is hard for him in other ways too.  He's undergone a lot of stress.  And to say I haven't gone through a lot of stress also, would definitely be an understatement...

John and I are leaving for Hershey, PA, in a few minutes.  We want to leave early enough so that we'll be at the American Cancer Society Hope Lodge soon. We want  go to bed early, and be fresh in the morning, as John's first  appointment is very early. 

At 8 am, John and I are expected in the Infusion Room, directly above the Cancer Clinic.   John will get labs done in the Infusion Room.

Many things go on in The Infusion Room beside getting labs done.  Some cancer patients get chemo while in the Infusion Room (John has had over 90 rounds of chemo), while other cancer patients get cells (cells from white cells in plasma), that will strengthen their immune system.  This process is called getting IVIG.  IVIG stands for Intravenous Immunoglobulon. IVIG is given to cancer patients to strengthen their immune system, because as I stated, they don't have one.  That's because after a bone marrow transplant, some BMT patients immune systems go away, and some never even ever return.  It doesn't happen often, but it does happen.  So having low antibodies, and not getting his immune system back, did happen to John, of course, LOL.

I said "of course"

because John just keeps keeps getting unusual and far more rare complications than most other BMTers.  It keeps happening, inevitably, year after year.  Maybe the complications are finally slowing down.  I do hope so! Especially for John's  sake.

Because I want him to be more confident that he can relax some, that he can embrace life to it's fullest, to be more secure, and to just love life! I want him to really step out and live his life now.  

Being confident and secure is somebody John has always was, but has had a little bit of trouble being this way, during this last cancer he's had. I mean this third blood cancer John's had.  Actually, I'm not sure if he is on his second or third blood cancer right now.  I've heard two doctors say he had three cancers. The cancers were Non Hodgkin's Lymphoma, MDS (preleukemia), and AML (leukemia).  Some of the other hem/onc doctors said he had the first two cancers but not the leukemia. Dr Claxton, His blood cancer doctor says he had NHL (lymphoma), MDS (bone marrow cancer and preleukemia), and Leukemia.  I am going with what Dr Claxton says, as that is his Dr, and he has known him the longest and the best... He told us this just a few months ago, that he had all three of these cancers, and that at that time about four months ago -- that all four cancers were in complete remission!  Like he thought, 99% John wouldn't be coming out of remission anyway!...  So why didn't I tell you all yet?  I don't know, I just wanted to be sure or something... Make sure I heard him correctly or something... I know I heard him correctly, Dr Claxton I mean, but I  just wanted to ask him a few questions first, before I announced it to you, my friends, and to the world!!

Anyway, getting back to John, my beloved husband, the physical things my husband has gone through, all the cancers (especially the last two), all his chemo treatments and the bone marrow transplant, all his complications and their treatments -- these physical things that can make a person a little shaky (even if it's subconscious), I think could hold someone back a little in life.  He hasn't told me that any illnesses of his are doing that to him.  But I do wonder at times if it happens.  I do know that he is in CKD3 (that's Chronic Kidney Disease Stage 3), and that comes before needing permanent dialysis and a kidney transplant (if you're able to find a kidney).  And then there's the thing of his antibodies not being high enough (I'm wondering if this is in the back of his mind, I don't know if it is or not, he doesn't share his health with me too often as he thinks it will make me scared and upset), and if John believes his antibodies aren't working well, that his immune system won't function well enough, even with the artificial boost that it's often given (the IVIG), which could cause him to catch something and die.  He wouldn't have to catch something too serious to die...

On the other hand, John, while going through all this, and even considering it, at the same time, does have a pretty fantastic attitude.  My John has always pulled for life.  My john has always pulled for survival.Each and everyone of us reading this know this.

 So once again, he will go on, fighting anything that could possibly try to harm his body, anything that could possibly mess with his mind, anything that would momentarily dampen his spirits.  My John, our John, is a Survivor, and will always be a Survivor!  Long live the Survivor!  

So after John's 8 am appointment in the Infusion Room, John and I will be headed downstairs to the Cancer Clinic to see Dr Claxton, John's hematologist/oncologist (blood cancer doctor).     

One of the reasons we're going is because John has had numerous complications lately.  And one of them is fevers.  They have gone on for months.  And night sweats.  Anybody who has had cancer before knows what fevers and night sweats almost always mean.  And they know what they mean if they return.  

Fevers and night sweats mean Cancer.  Fevers and night sweats returning mean the possibility of cancer returning.  But then who knows.  We'll see.  I guess it could go 50 50. Please pray.  We have been up to Hershey three times in the past four weeks.  I just don't know.  Please pray.  Yes, I know this is sudden and direct.  I never did beat around the bush, did I, LOL.  I always thought it was much better to get to the point, then we could pray, etc.  Thanks for the prayers.  Got to run,

love you from the bottom of my heart,  your krissy :)  

John's been in the Hospital most of the past month

Gall Bladder Surgery, Pancreatitis Surgery -- Hmmm, what'll be next??

So John's in the hospital again. Locally this time. He's been there, oh, I can't remember how long, because I've lost track of time.

I do remember he had the Gall Bladder surgery on May 5th. That was a rough surgery for him, because he has immune system problems. His antibodies never returned after his bone marrow transplant. So it wasn't same day surgery. John had to stay inpatient for awhile.

The surgeon put a Jackson Pratt Drain in John during the surgery. A JP Drain drains excess fluid from the body after surgery. Here's a photo of a JP Drain.

A JP Drain consists of a tube, as well as a bulb for collecting fluid after a surgery. The end of the tube is sewn inside the patient's body during the surgery. The other end of the tube extends way outside the patient's body, and culminates in a rubber bulb in which bodily fluid collects. These bulbs are said to resemble hand grenades. They are capped to create suction (to pull out body fluid that looks like blood to me, but I don't really know what it is!), as to prevent the bloody looking fluid from being trapped inside the body.

Another reason the bulbs are capped are so that people like John and I can empty them and measure how much body fluid they contain, LOL. Let me explain. Oh, and we also had to continuously keep the area of the drain and the wound sterile and bandaged at all times. This was very difficult because the area around the John's JP drain frequently leaked. I don't know if it was supposed to, but John's did!

Daily I had to measure how much blood filled the hand grenade thingy (capped rubber bulb)that was attached to this long rubber tube stitched to John's belly, peering out of a gaping wound. I had to do this by carefully uncapping the bulb and dumping the bodily fluids into a measuring container. John and I would take turns doing this, and laugh, actually.

We laughed because we had to put measurements on an official "Nurses' Chart", as well as comments. We had to sign our "Nurse's Names" at the top of the chart, as well as our "Nurse's Initials," and initial each time we made a comment, so that everyone would know which "nurse" had taken care of John! What we were doing was somewhat complicated, and the reason we were laughing so hard was because we weren't nurses, yet we had to fill out this complicated Nurses' Chart.

So one day into this little project, as we were filling out our paperwork, I looked up to the top of the chart that we were required to fill out per the hospital, and were to bring to to John's appointment in about a week and give to Dr. Martin, and impulsivity overtook me. I began to mark up the official chart the hospital had given me! The one we had been so meticulous on thus far. I didn't care that it was going back to Dr. Martin!

Above Nurse's Names I wrote the word Faux. After all, we were Faux Nurses, LOL. I continued to mark up the chart, and John and I just kept on laughing. Anything for a laugh for John and me. We needed it by this time.

And John started to mend.

Little did we know that in a few days he would be sick again.

But I'll post about that tomorrow or the next day. I'm oh so tired from going to the hospital constantly -- eight times in the past two months, if you count the totally necessary emergency room visits.

Just suffice it to say John suddenly began to have very serious pain, off and on, and then very high fevers. We had to go to Hershey Medical Center (Hershey Hospital) and John was hospitalized there. There they discovered pneumonia in two places in his lungs but couldn't figure out what was really making him sick. Then suddenly John's fever lowered and he was discharged.

So home we went. And of course his very high fevers returned, and he had extremely severe pain. And into the local hospital he went again. Where he had another surgery, and where he remains even now. But I'll tell you that story more in depth in a day or two.

Stay tuned for --

The Stone That Got Away!

For John -- I'll Stand By You

This song is dedicated to my husband, John Knox, a two time cancer survivor. It's I'll Stand By You by Carrie Underwood. A few weeks ago, John had another cancer scare. We were sure this time his cancer was back. The numbers and symptoms indicated it. I'll tell you more about it later, but I just wanted you to know that as of now, it appears he's still cancer-free. We were stunned when we heard the cancer was most likely back, and just as stunned to learn a few weeks later that it wasn't. But let me digress for a moment. During the weeks when we weren't sure if the cancer was back, or rather, were almost positive it was back, I would sing this song, I'll Stand By You, to John. Now it's "our song." Listen to the words, it's beautiful...

Writer's Block

"Writer's Block -- A phenomenom involving temporary loss of ability to begin or continue writing, usually due to lack of inspiration or creativity.

That's what John says I have. Writer's block. What do I think? Perhaps. But not in the traditional sense, I don't think. I don't lack inspiration or creativity. And I certainly haven't been lacking things to write about.

Yes, I realize I haven't written in about three weeks. And I couldn't figure out why. There has been so much I have wanted to write about, so much I have wanted to tell you all. So many interesting things that have been going on in my life. So much I have learned. And so much that has happened. Some good things, and so many not so good things...

And I think therein lies the problem. The desire to include the not so good things along with the good things. I want to include those things along with the good things that have been going on, and the great things. Because they also are part of the story. My story. Let me digress for a moment.

A lot has gone on in my life since October 2008. Perhaps September 2008. I suppose that is when I had some major changes happen, both in my life and in my mindset. Wow, that's been almost six months now. I've wanted to tell you all about it.

So why haven't I? I sat down for the past few days and asked myself, now why haven't I been writing? I mean really writing? And when I do, why does it appear to be somewhat superficial? The answer finally came to me.

And the answer is pretty simple. John (my husband) has had health issues again. Don't worry, he's still in remmission from the two cancers he had. But he's had lots of complications as of late. From late September 2008 until now, he's been sick. I'm going to be straight forward with you. We almost lost him twice recently. Maybe more than twice.

And since October 2008 John has had pneumonia with fevers. It appears finally, perhaps, it may be clearing up. Maybe. In the past few days, his fever has been normal for the first time since October. It looks like this particular antibiotic is working!

But he's not out of the woods. His kidneys are giving him more trouble than they were previously. I believe he had about 35% kidney function until recently -- now I believe it's about 25%. That means the man is walking around with about 1/4 kidney function. That's both kidneys. Wow.

Don't get me wrong. He's not so disabled he's lying around in bed all day. He does do things every day. His condition doesn't stop him from doing every day things -- he just does them a little slower than the average person. He doesn't lay around in bed all day, however. But he does take naps -- one or two a day.

He also has a weakened immune system, and is going to get something called IVIG, probably in the next week or two . I'll tell you more about that more in the next few days when I know more. I'm a little nervous. The last time he got it, he ended up in the ICU at Hershey Medical Center (his bone marrow transplant center). So I'm somewhat apprehensive. I'll let you all know when that takes place...

So what does all of this have to do with Writer's Block? Everything!

I was told by a couple of bloggers to stop writing about John unless his condition was positive...

That's correct. They told me not to write if I didn't have positive things to say about John and what was going on with him. They said it would be too upsetting to you all if he wasn't in good health, and you just wouldn't want to know if he wasn't...

So to make a long story short, I merely stopped writing.

John is a large part of my life, as is what happens to him, so I just stopped writing rather than choose to leave him out of what I was writing about on a daily basis. It was a subconscious decision really -- I didn't realize what I was doing, and I didn't realize why I couldn't write until a few days ago. At first I was just going to write, not mentioning John, but still mention other areas of my life. But I thought tht would be superficial. I guess writing nothing at all was pretty superficial in and of itself, now that I think about it. But I thought it was what everyone wanted.

Until I talked to John. He said, "Krissy, you write. I believe most want to hear what you have to say. say. Whoever doesn't, doesn't have to read it. Besides, I do think they want to hear about what's going on with me." So tonight I'm coming back to write, and I'm including John in what I have to say. I should have done that all along...

And for that I'm sorry. I will start writing again. The good, the bad, the average, the interesting, the ugly, and the fun! All of it. Stay tuned for an interesting and sometimes bumpy ride!

Have you all missed me? I've missed you very much! Krissy :)