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 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 :)

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 :)