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 has posted again

I thougth I'd tell you a little about what has been going on with my husband John.

Because of complications from his bone marrow transplant, which he received to put two cancers into remission, my husband John has been unable to post for two years.

This has caused my posting and commenting to also be very infrequent, but that's another story. I'll be posting regularly this year barring some disaster -- you'll just have to wait and see!

Anyway, John has started to feel a lot better, and was finally able to post on December 26, 2010, just a few days ago.

While it's been a little over two years since John has posted, he is going to attempt to post on a regular basis from now on. Or at least as frequently as he can. He is still going through a lot of health issues, but as you all know, he is very stubborn, too stubborn sometimes, LOL, and he isn't going to give up in many areas in his life!

Stubborness (or shall I call it persistence with him) is often a good thing, so perhaps he's not too stubborn! As well as the Lord, stubborness has kept my husband alive. And it will keep him moving forward as he attempts to find his "new normal" in life as a Survivor.

This stubborness will keep him moving forward as he attempts to find what he wants to do in the next few years of his life, and to see what the Lord has in store for him to do in the future.

It will be exciting for him, and for me as well! The future is feeling brighter...

Anyway, if you haven't visited his entry of a few days ago, and would like to, let me give you the link:

Merry Christmas 2010

If youd like to read more of John's blog you'll find it here:


too stubborn to die

Finally, I'd like to say Happy New Year from John and me. May 2011 be your best year yet! God bless you all.

krissy :)

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...

John's post cancer checkup went well

John had a great checkup!

As most of my readers know, my husband John had two cancers, but is in remission from both of them. After much chemo, a Bone Marrow Transplant, and excellent medical care -- John has pulled through. It has come at the expense of many complications. As John says, however, it's all been worth it, as he is alive...

Anyway, John and I have been gone for about two weeks. We went to Hershey, PA to see John's oncologist Dr. Claxton on December 21, 2009 . As usual, Hershey Medical Center and it's staff are superior.

John's checkup went quite well!

The Shingles and Chicken Pox he had gotten again this year (in November and December -- just like last year) had already cleared up a few weeks prior to his appointment with Dr. Claxton. John's local doctor as well as his doctors in Hershey were just that good that he was able to be treated and his Shingles and Chicken Pox were eradicated without hospitalization this year!

That is pretty unheard of for a person who has almost no immune system, as John does. John has almost no antibodies since he received his Bone Marrow Transplant (for two cancers) in January of 2006. He lost his antibodies after his bone marrow transplant and they never returned. They probably never will. He wears a mask everywhere and is not going to venture outside -- at least during the winter months. Especially this year with flu and H1N1 (swine flu) pretty rampant in our town.

If I were to mention any other problems that are going on with John, I would mention he still only has about one third kidney function and that is never expected to improve in his lifetime. He has about a 50/50 chance of getting dialyzed in his lifetime. But then we've known that for awhile.

And then finally there is the issue of Hemolytic Anemia, of which he could get back at any time, and was getting seven bags of blood for at a time at one point. He had to get several bags of blood every day or every couple of days for months and months.

My old readers remember that. I guess I'm mentioning this for my new readers.

Having said all that, John really is doing fantastic. New complications are not constantly creeping up which is fantastic. John is beginning to live his "new life." You can never go back to your old life, because it will never be quite the same after cancer, but you have to make a "new normal." John's deciding what he wants to do with his life -- what he wants that new normal to be. He's gone back to writing. He has already started, and will soon be posting again in his blog too stubborn to die.

John gets stronger every day. He does a lot of work around the house, drives us places. Most don't know he has kidney problems or anything wrong, when they just see him around the house or whatever. He doesn't just lay around... Many don't know he had cancers (except for the mask he wears) and we are praying his cancers stay in remission. He was told he has a 90% chance that his cancers will remain in remission. Praise God for that.

On his tests at Dr. Claxton's appointment he John did excellently. He also had four baby immunizations! The immunosuppressants you receive after the Bone Marrow Transplant wipe out alll your baby and childhood vaccinations, so at three years post Transplant, you have to get your childhood vaccinations again! He usually gets four or more shots at a time! You can imagine he doesn't like driving afterward, each shot must be given in a different place, LOL.

So, overall, John is doing quite well, and if he doesn't have any problems he doesn't have to go back for about 4 1/2 months, which will be his longest time between appointments ever!

Next time I'll post about my "New Normal" and some of the things I've been doing with my new life. It's been good and I've been loving it, even though I have struggles. I'm so glad my life is starting to move on... krissy :)

John's Battle with Zoster

John and I have been in Hershey for the past several days. From Sunday through last night. That's the reason you haven't heard from me. I didn't have time to post because John had six medical appointments, and I of course accompanied him.

Overall, during his appointments this time at his bone marrow transplant center, John fared pretty well. He received better news than we both thought he would. John does have fungal pneumonia, as we suspected, but it has greatly improved according to the report given to us by one of his oncologists. The report was a result of a CT scan John had this visit to his oncologists. It was very reassuring to know he has greatly improved, as fungal pneumonia can be serious.

John has had viral and fungal pneumonia since September 2008.

John contracted the viral pneumonia in Sept 2008 when he was taken off Valtrex, a medication he takes to prevent viral infections. I remember sitting in Dr. Claxton's office last year, as he stated, "You can stop your Valtrex now. I'm sure you won't catch shingles at this point, this far out from your transplant."

So John went off the Valtrex, then promptly turned around and caught shingles! I don't know if participating in the Light The Night Walk, to raise money against blood cancers -- such as Leukemia -- had anything to do with John catching shingles. We were around thousands of people that night. Who knows? He may have gotten shingles anyway, because he was no longer taking the Valtrex.


John at Light The Night
Walk in Sept 2008

A few days after the Shingles started, John noticed Chicken Pox. Yep, Chicken Pox. His immunities had been wiped out by the bone marrow transplant he had had over two years earlier. Those who have a bone marrow transplant literally have their immune system wiped out, and they have to get their baby and childhood vaccinations allover again.


John with Shingles in Oct 2008

So on the last day of September, off John and I went to Hershey Medical Center, because he had very severe Shingles and Chicken pox. We went by ambulance, as I have narcolepsy, and I just can't drive. John was admitted, and we ended up having to stay in Hershey most of October. By the end of the visit in October, before leaving the hospital, Dr. Claxton told John that if he had waited another couple of days to come in he wouldn't have made it...

John said shingles pain was a 9.5
on a scale of 1 - 10.

John was admitted again to the hospital in November for Zoster Pneumonia. The Zoster (Shingles Virus) just wouldn't quit.


John with Zoster
Pneumonia in Nov 2008

John was discharged from the hospital and we got home the last week in November. I spent Thanksgiving and its surrounding days giving John IV infusions of viral medications -- through a port (PICC line) that had been inserted at the hospital -- to try to end the pneumonia caused by the shingles and chicken pox. The IVs were around the clock. There was no time to make anything for Thanksgiving, but we were just grateful to be in our own home...


John getting IV antiviral at home

I'm not real sure why the oncologist (I'm not referring to Dr. Claxton, but an oncologist subbing for him) let John out of the hospital before the pneumonia was cleared up, in the first place. I remember John feeling pretty poorly when he left. On second thought, I do know the reason, I believe, that John was discharged early by Dr. E., but that's a post for another day... I'll tell it later.

During the months of hospitalizations and home treatments, John just couldn't seem to get completely better, and just couldn't seem to get over his fevers and pneumonia. The viral medications he was given orally and by IV weren't improving his health completely. As a matter of fact, John hasn't felt significantly better until this month -- March 2009...

This is because, it was discovered, John also had contracted fungal pneumonia. The doctors were able to ascertain this by the pattern the pneumonia formed in his lungs. John had x-rays and CT scans which showed "multi-focal pneumonia."

Anyway, as I stated, we're thankful that per the report we received, John is doing so much better now. He will have to live with some permanent damage to his lungs on both sides. One issue is scarring. He has had some difficulty breathing, tires easily, and can't take in full breaths at times.

But I'm very thankful John's making great improvements, and it appears that things are looking up from here. I'm glad he's out of the woods!

I finally feel that we are out of a long, long Winter, and Spring has finally arrived.

Love you all, Krissy :)

Blogging Is In My Blood

I was thinking yesterday about why I hadn't been blogging the last month -- actually why I hadn't been blogging much for the last six months.

The answer came to me. I've been living in stress for six months -- and I almost let this stress drain me of my focus and energy, before I recently became aware of what was happening.

It's stressful living with a Bone Marrow Transplant Survivor. All the ups and downs can be particularly stressful. But I needn't focus on that stress, and allow it to take away my focus or energy. I needn't allow the stress to take away the fact that I want to blog and do other things in my life. I can't let the stress win...

Yes, it is stressful living with a bone marrow transplant patient. I'm not complaining, though. I wouldn't be with anybody else but my husband John. He means the world to me. Perhaps that is why it was so hard when he was hospitalized in October 2008, and then again in November 2008, and we almost lost him a couple of times at the hospital. Since that time, John and I have made frequent trips to Hershey Medical Center, his hospital and Bone Marrow Transplant Center, to take care of his health problems.

By the way, John had his three year anniversary of his Bone Marrow Transplant in January of 2009. When he first had the transplant I was imagining he wouldn't be having these problems at three years post transplant, but now I see it is something I'm going to have to live with. At least for now. He is just one of the survivors who gets many complications. He always has been. And he is always the one to survive against great odds! So I am thankful for that -- that he's a real fighter!

But while I'm thankful, I'm still very tired. That's really the reason I haven't written much -- I've been tired, and I've had a very hard time focusing on blogging, writing or photography. I've had a hard time focusing on just about anything in my life other than medical appointments. I've just been attempting to "make it through."

But it's not going to be like that anymore. It's time to move on. I want more purpose back in my life. I can still help John and focus on goals I have wanted to accomplish for a long time. And blogging is one of them. So I'm back to it.

Blogging is in my blood.

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 :)