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 is in remission from three cancers!

We've waited and waited for this day.  Thirteen years to be exact.  When my husband John was 36 years old, as most of you know, he was diagnosed with Non Hodgkin's Lymphoma.  It was unusual how John's physician, at the time, found the cancer.  Dr. Hall was doing surgery for a hernia correction when he found a tumor that happened to be the lymphoma.  It was both one of the worst things that could happen during a hernia surgery, yet a real blessing -- if the surgeon hadn't opened John up, he never would have found the tumor and John would have never started to fight the dreadful cancer he had, which, as I stated, was Non Hodgkin's Lymphoma.  John had more than one tumor, and was staged at 3B.  And the cancer was in his lymph nodes.  The surgeon stated that if he had not found the cancerous tumor when he had, John would have been dead within six months.  

Back 13 years ago, blood cancer doctors (hematologists/oncologists) didn't have a lot of hope for patients with NHL.  John was told that even if he was put into remission, he probably wouldn't live.  He was advised to be proactive, choose a method of treatment and do everything he could to fight. This would extend his life for only a few years, they said.  And this, the hem/oncs (blood cancer doctors), told John, could buy him enough time until enough time for another treatment  or cure came along, so that if it happened enough time, John would be able to live.

I have asked John how he could live like this.  He has told me, "You do what you got to do.  If you were going to die, you would do what you had to do.  There was no other option.  Everybody keeps calling me brave.  An inspiration.  I am not an  inspiration.  All I did was survive."

On the contrary, I believe John is an inspiration.  I'm not sure I wouldn't have gotten depressed and quit.  I'm not sure I would've been able to last the 13 years, before I was declared OK, and worked so hard.  But then again, you never know.  As John says, "You do what you have to do."  

Okay, this post has gotten long, so I am going to finish it tomorrow.  I hope you come back to read the rest.  Meanwhile, I've got a question for you:

I think John was an inspiration.  I think the fact he did work hard to survive is an inspiration.  I think he did "more than survive" and he's a true hero, trying and trying, until he finally got into remission.  I will explain how his remission, and how Dr Claxton is actually calling it a "cure", came 13 years later, in the next post or two.  But for  now, I want to ask you this:

Did John just do what he had to do?  Or is he an inspiration to you? Just wondering.  I am going to be showing him the answers!

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 :)

3 Hairs

3 Hairs

There was a woman who woke up one morning, looked in the mirror,
and noticed she had only three hairs on her head.

"Well," she said, "I think I'll braid my hair today."

So she did and she had a wonderful day.

The next day she woke up, looked in the mirror, and saw that she had
only two hairs on her head.

"Hmmm," she said, "I think I'll part my hair today."

So she did and she had a grand day.

The next day she woke up, looked in the mirror, and noticed that she had
only one hair on her head.

"Well," she said, "today I'm going to wear my hair in a pony tail."

So she did, and she had a fun, fun day.

The next day she woke up, looked in the mirror, and noticed that there
wasn't a single hair on her head.

"YAY!" she exclaimed, "I don't have to fix my hair today!"

Attitude is everything! It can make or break your day.

Everyone you come in contact with is fighting battles like you. Let's take care of one another. And don't forget to take care of yourself!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


This poem is dedicated to all my cancer survivor friends. Hang in there Laurie, Phil, Jeannette, Patti, Fritz, Tom, Michelle, Jamie, Georgia, and each and every one of you. ;)

Most of all this poem is dedicated to my husband John, who went bald numerous times during his cancer ordeal.


John without much hair, during one of his 100+ blood transfusions


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
If you have cancer or know someone who does, please visit your local American Cancer Society. The link is listed below. When you get to the ACS website, enter your zipcode in the box on the top right of the page to find ACS help in your local area.

American Cancer Society

If you are a cancer patient and would like to receive a card to encourage you, click the link below, then click on "REQUEST A JUMP" on the top right of the page. If you would like to send a card to a cancer patient, click the same link below, and click on "BECOME A JUMPER."

SPIRIT JUMP

See also my Sister Valerie's blog today, she also wrote a cancer awareness message~

Joy in the Rain 3 Hairs, Cancer Awareness

Remember, be good to each other, be good to yourself, and attitude really is everything!

Have a GRAND day!

all my love, krissy :)

Of Hip Replacements for John and the First Day of Spring

It's the First Day of Spring -- March 20, 2010

Even today as I look around, I see some patches of snow in the very cold part of Pennsylvania in which I live, but the snow is almost gone. Two days ago, as John and I were on our way to Hershey Medical Center, his cancer treatment center, I saw my first real promise that Spring would be here soon -- a clump of deep, vibrant purple crocuses. Then as John and I pulled into the hospital parking lot we saw a sea of yellow daffodils! I knew Spring was approaching fast!
Today I can see and feel Spring everywhere and I'm finally feeling good.

This has been the longest, coldest Winter I can remember. There has been snow on the ground for months, and it has perhaps been snowing more days than not this Winter. Or so it seems. And I feel I've finally made it through a long, dark time.

And yet, there will be some more tough days to come. When we were up at Hershey Medical Center these past few days, my husband John found that Graft Versus Host Disease had returned to his eyes. GVHD can be a sign that your donor has rejected you after a bone marrow transplant, and that your cancer will return or has returned.

No, John's donor has not rejected him -- most likely -- and he is still in remission from his two cancers. Thank God for that. John is just having problems with his eyes -- itching, burning, and a little trouble seeing.

Another thing John has been dealing with on this visit is a lump and something suspicious possibly indicative of cancer found in his body during a CT scan last week. That's one of the reasons we're in Hershey right now. But John and I are not worrying. Gee, if we worried about every scare, we'd go nuts! So we'll wait and see what happens. We're going home on Saturday (first day of Spring!) and John will most likely get the suspicious areas looked at there, by his local oncologist, Dr. Ford. If not, we'll come back to Hershey soon.

If it does turn out that John does have another cancer, he could possibly even be treated where we live. That would mean that we wouldn't have to make so many trips to Hershey Medical Center. We believe Hershey is the best place to go in the world if you need cancer treatment. It is just becoming difficult to make the 210+ mile round trip for us when John goes for check-ups or receives treatments.

I guess I should mention one more thing about John. While at home, a few days before leaving for Hershey Medical Center, he had an MRI, because he had a pain level of 7 for several months in his pelvic area (on his backside).

The MRI showed Osteo Necrosis. For those of you who don't know how to
translate that, Osteo means "bones" and necrosis means "dead" or "dying."
As in "dead bones."

John will have to get two hip replacements to correct the Osteo Necrosis -- one in each hip.

Dr. Claxton wants John to get treatment for the Osteo Necrosis, at least initially, back where we live. First he will get bone medication, then he will get the hip replacements. John will see an Orthopedic Surgeon as soon as he gets back home.

We don't know how soon the replacements will be -- within days or years. We'll have to go back home and ask our local Orthopedic Surgeon.

Yes, I'm glad it's Spring, but I'm already tired from the challenges that lay ahead!

But John and I are always up for challenges, I guess, because that's the way we live our lives. So, one day at a time, onward...

love you all, krissy :)

I've Been Feeling Weepy

I'm sitting here wanting to write, and all that seem to come out of me are tears. I'm finding myself so weepy these past few days, and in turn feeling guilty for feeling this way. Why should I have the right to cry? After going through what John and I felt was such a close call for him, yet again, and then learning that John's cancer probably isn't back, I feel I should be jumping for joy, and don't have the right to have any other reaction. But it's hard for me to have my emotions so quickly yanked around -- yes, even if I'm feeling scared one day, and happy the next, due to good news. That probably doesn't make much sense to anyone, and I really am grateful that John is doing well, and I wouldn't have it any other way. Yet somehow I'm having trouble switching tracks and going back to being happy again. I imagine it's because I really don't know what to believe anymore, and I don't know what's going to happen next anymore, and I can't plan for anything. I'm so hyper vigilant -- almost waiting for the next shoe to fall.

Now I'm seeing it. I just need to relax, and take each day as it comes, making the most of that day. Then I'll never be disappointed... Because each day IS a good day...

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 :)

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 :)