| |
|
Sunday, May 11, 2008
Subject: Could John need blood transfusions again?
Time: 9:13:40 PM EDT
Author: fisherkristina
Yes, John and I are home from Hershey Medical Center, where we went to visit his oncologist.
So let me tell you what's up with John.
Two things. On Sunday night, the night before we went to Hershey, John slipped in the shower. He banged his head on the edge of the tub. I had to take him to the Emergency Room. They gave him a CAT scan to see if he had internal bleeding, and said he did not. Then the physician took the gash in his scalp and glued it back together. I didn't know they could glue instead of doing stitches nowadays!
At any rate, right now, after a week, John is still in very severe pain (his head and neck). So this afternoon he called the local doctor on call. The doctor said there is a chance that John could now be bleeding internally, and told us to call his primary care doctor tomorrow (Monday) and see if he wants to do an MRI.
Perhaps all John has is whiplash, but if it is, it is of a most severe case. He has trouble every day, has to lay around a lot, and can never stay up after 4 pm. He has to lay down and go to sleep. He says his neck feels wrenched.
Okay, here's the second thing that is going on with John.
First let me say that his cancers are NOT back. He still remains cancerfree.
But there is something wrong. His hemoglobin count is dropping dramatically. This means his Hemolytic Anemia may be coming back. I wanted to explain these terms to my new readers, but I am just too exhausted. I will just put it this way, my dear readers. After my husband John had two cancers, then the bone marrow transplant that put the cancers in remission, he developed a disease called Autoimmune Hemolytic Anemia (AIHA). His oncologist doesn't know what caused it, but thinks it was perhaps a medication that was given after the bone marrow transplant.
Okay, I'll explain quickly what Hemolytic Anemia is. It's anemia caused by excessive destruction of red blood cells. That's a fancy way of saying that your red blood cells are destroyed in your body at a very fast pace. If I remember correctly, a red blood cell is made and then lives 120 days. John's were made and then dying in 1 day instead of 120. That is why John had to have over 100 transfusions (bags of blood - red blood cells really) in a few short months. His blood cells were dying and they had to be replaced immediately or he wouldn't have enough and he would die.
After several months John got much better and needed fewer and fewer units (bags) of blood. He appeared to be cured of the Hemolytic Anemia. That was after lots of chemo treatments to attempt to cure it. When John first had the AIHA he needed 7 units of blood a day at first (this took all day and most of the night), and then ended up needing less and less blood, until he appeared cured. He had his last two bags this past November.
Okay, here is the part I wanted to tell you all. His hemoglobin won't come up at this time. As a matter of fact, it has been pretty low since the last transfusion. It has only artificially been raised by Aranesp shots (shots to raise your red blood cell count). What I am getting at here is, there is the possibility that the Hemolytic Anemia never left, or it is back. Which means blood transfusions in John's future. John's Hemolytic Anemia is not real bad at this time. Because John's bilirubin count is okay. But it could get really bad. Right now he is taking these shots to stave the transfusions off. Which may or may not work.
All of this is to say that he may need to start getting blood again. For a little while or for months or years. Who knows?
How is he taking this? In stride. How am I? In stride too. Oh well, life happens. How will I feel if it becomes more of a reality? I don't even want to think about it... But we always manage. We have each other and we have the Lord.
Love you all,
Krissy
Written by fisherkristina
Permalink
| Blog about this entry
|  Add to del.icio.us |  digg this
This entry has comments: Add your own
Monday, May 5, 2008
Subject: a message from Krissy...
Time: 11:07:23 AM EDT
Author: fisherkristina
Hi, this is Val, Krissy's sister. Krissy wanted you all to know that she left for Hershey Medical Center early this morning with John and was so busy getting ready she didn't have time to let you all know. John has a check-up with his oncologist. He is doing well, so don't worry!! It is just a check-up. For those of you who are new readers, Krissy's husband, John, is a bone marrow transplant recipient. Krissy promises she will post a new Photo Shoot subject when she returns in two or three days, too! Have a good Monday!! Val from There is a Season =)
Written by fisherkristina
Permalink
| Blog about this entry
| Add to del.icio.us | digg this
This entry has comments: Add your own
Subject: monday morning question
Time: 7:03:58 AM EDT
Author: fisherkristina
So, was this, like, a great moment in American television, or what?
http://www.youtube.com/watch?v=DyooALwfxO8
I say yes.
What say you?
Krissy :)
Written by fisherkristina
Permalink
| Blog about this entry
| Add to del.icio.us | digg this
This entry has comments: Add your own
Saturday, May 3, 2008
Subject: Happy 80th birthday Dad!
Time: 11:06:49 PM EDT
Author: fisherkristina
Happy Birthday, Dad!!!
My Dad turned 80 today.
Gee, when I think of 80, I think of, like, old people. But he doesn't seem old to me. Not 80 anyway.
He is very young at heart. He's lots of fun. Loves to banter. He's where Val and I got our love of words from. He studies the dictionary. Sometimes we will sit around and discuss root words and meanings of words from the dictionary in my family as our fun!
Okay, instead of me telling you more about him, I thought I'd bring to you this little interview I did with him this afternoon.
Krissy: What is your secret to making it to 80?
Dad: Be a practicing alcoholic till around 50. That means you are not one after that.
Krissy: What's important in life?
Dad: a heartbeat and the 12 steps
Krissy: How does it feel to be 80?
Dad: A year older than 79.
Krissy: What was your favorite job?
Dad: The last day of the last one.
Krissy: How tall are you?
Dad: Now 5' 6", used to be 5' 9"
Krissy: How many children do you have?
Dad: six
Krissy: Who is your favorite child?
Dad: Whichever one asks me the question.
Krissy: How many languages do you speak?
Dad: I can say "One ham sandwich with mustard and a beer, if you please" in french, and I can count to three in Arabic. I also know American English.
Krissy: How old are you?
Dad: It is my 80th birthday, but I am already starting 81 years - excluding any gestation period. If we counted the gestation period, I would almost be starting 82 years. The Chinese have a better system than we do for marking age. They say a baby is one - starting it's first year - when it is born. We say we are one when we are PAST our first year.
Okay, you all, I hope you enjoyed this interview with my father! I hope you wish him a happy birthday, albeit a little bit late, as I am late with this entry. At any rate, he does read my blog and the comments, so if you wish him a happy birthday, he will see your comment. He goes by Dad or Don!
Love you all, Krissy :)
Written by fisherkristina
Permalink
| Blog about this entry
| Add to del.icio.us | digg this
This entry has comments: Add your own
Thursday, May 1, 2008
Subject: give me more Occupational Therapy, not surgery!
Time: 5:36:29 AM EDT
Author: fisherkristina
I've been asked by some why I wouldn't rather just have surgery instead of working through the severe pain of Occupational Therapy right now. I've even pondered it myself, for a few seconds! I thought I'd answer that question.
Actually, I found out what I would be having wouldn't be surgery, per say. It would be more of a "procedure". What it would be is the surgeon would put me under, and when I was out, he would rip the adhesions and scar tissue loose in my shoulder, by just plain forcing it (ripping it I guess). Then he would unfreeze my shoulder by forcing it to move all around. Something I can't do yet (move my shoulder completely around - too much scar tissue that I haven't broken through yet) .
Okay, there are a few reasons I don't want this procedure done if I can at all help it. One problem with this procedure is the possibility of further tears in the muscle in my rotator cuff if he did this. Also, I was told by my Occupational Therapist, Tracy, that I would be in a lot of pain following the procedure. Not only would there be a lot of pain, but I would have to begin moving the shoulder/arm immediately, and I would have to go back to Occupational Therapy anyway!
I am not adverse to operations, but why not try to make it work in OT first? That is my goal! If I need the procedure I will DEFINITELY have it, but I am shooting for trying to make it without the procedure first!
Hope that makes sense. Love you all,
Krissy :)
Written by fisherkristina
Permalink
| Blog about this entry
| Add to del.icio.us | digg this
This entry has comments: Add your own
Wednesday, April 30, 2008
Subject: announcing "What's the Caption? Wednesday" at Magic Smoke
Time: 12:58:23 PM EDT
Author: fisherkristina
There's a new weekly game going on at Magic Smoke. This game was started by me and my sister Valerie of There is a Season. In case you haven't seen it yet, why not pop over to this week's game, and give it a try?
To play, go here:
Written by fisherkristina
Permalink
| Blog about this entry
| Add to del.icio.us | digg this
This entry has comments: Add your own
Subject: John's almost better!
Time: 8:35:24 AM EDT
Author: fisherkristina
I don't know how long it has been since John got bronchitis and the flu. Maybe it has been two weeks. I do know he has stopped fevering (he just stopped fevering about two nights ago!). He is still weak though, and can't do as much as he used to yet. He has to rest a lot. But he is definitely on the mend! Thanks for all the prayers.
I am making progress on my shoulder and arm. Sometimes I get discouraged and think it is impossible to make enough progress without having to go through with the procedure. But I am not going to give up yet, by any means. I do my exercises at home, and go to Occupational Therapy. I let them torture me there! I may have mentioned this, but I don't recall anything hurting as much in my life as trying to get my shoulder/ arm in working order again . I let my OT, Tracy, stretch my shoulder/ arm while I am lying down. She is breaking apart the adhesions/ scar tissue that is there. It must either be done that way, or I have to get it done under anesthesia. And if I do get it done under anesthesia I will still have to come in after the procedure for OT anyway. So I am trying for not having the surgery (procedure really - they are not going to cut - they are going to stretch and pull my muscles around breaking up scar tissue, while I am under).
My arm aches all the time. The pain wakes me or gets into my dreams. I feel the pain pretty bad right now.
Okay, now I feel whiney, LOL. I'm just mentioning what is going on because I get emails on how John and I are doing. Thanks for the emails! And for the prayers.
How else are we doing? We are behind on a million things, LOL. I don't know which way to turn my head, to start first.
Some cool things are coming up though. I am looking forward to the Spring and Summer. We will be doing some special things. Oooooh, I think spending some time at the park sounds nice. And some grilling and some walks.
John and I are also going to plant a rose bush. A yellow one. In memory/ honor of John's Mom. I will tell you more about that later, when we do it. I've already picked it out.
Love you all,
Krissy :)
Written by fisherkristina
Permalink
| Blog about this entry
| Add to del.icio.us | digg this
This entry has comments: Add your own
Tuesday, April 29, 2008
Subject: JLand Photo Shoot #133 participants... (Spring)
Time: 11:52:07 PM EDT
Author: fisherkristina
JLand Photo Shoot #133: Spring
Once again I am late and a dollar short in posting these photo shoot links. It's because I have a lot going on in my life. I am hoping you understand. Please understand that I take very seriously the fact that you take time taking photos.
I am asking that you all try to visit these entries, even though you may be busy.
Thanks to all of you who participated this week. We had 20 participants. I hope you all are having fun!!! I want to say that this week's entries were particularly special. I was able to view Spring around the world, and what I viewed was breathtaking!
Now let's get on with it! Here are the participants for this week! :
Greg of Photo Trek shows us an "Inviting Bench" at the Bicentennial Gardens
Linda of Linda's World shows us how her rhododendron bush grew even without pruning
Sharon of Coastal Comfort shows us her parent's cherry tree and her stunning pear tree
Monica of Mamarrazi shows us Spring in DC. Cherry blossoms, of course!
Gina of Gina's space takes us to one of Alabama's state parks
Deb of Sassy's EYE shares with us a shot she took at a fair she visited in Santa Rose, CA
silverdoe64 of yathink? shows us pictures of "Spring fishin'" and "Stuck in Spring"
Just a note. There will be no JLand Photo Shoot this week. This is because it is already so late in the week, and I want you all to have enough time to take your photos!
A new photo shoot topic will be posted on Monday, May 5.
Thank you all for playing along!
Krissy :)
Written by fisherkristina
Permalink
| Blog about this entry
| Add to del.icio.us | digg this
This entry has comments: Add your own
Saturday, April 26, 2008
Subject: some photo tips and tricks from Kodak
Time: 3:51:41 PM EDT
Author: fisherkristina
Hi. I hope you all are having a good weekend!
I just got on the computer to find some photo tips. I found some that I believe are very helpful yet still simple enough.
What I came up with is a Kodak site:
I really like this site. Why not bookmark it? I think the tips are worth reading, and saving for when you are going out to take shots.
Okay, have fun reading, and have even more fun with your cameras!
Love, Krissy :)
Written by fisherkristina
Permalink
| Blog about this entry
| Add to del.icio.us | digg this
This entry has comments: Add your own
Subject: I probably don't have lung cancer/ John is still sick/ I hate narcolepsy
Time: 12:25:17 AM EDT
Author: fisherkristina
Where to start? Perhaps with the best first. The CT scan came back. It looks like I probably don't have lung cancer. Praise God for that. They can't be sure, so they will take another CT scan in three months. But right now they are leaning towards no cancer, because there was no growth in what they were looking at.
Thanks for all the emails of concern, asking about John and me. And so sorry I didn't reply to all of you sooner. It has been so hectic and I have just been trying to keep up with things at home, and doctor's appointments. John still has bronchitis and the flu. He went back to the Physician's Assistant today, because he still has been running fever's all week. This has been for a week and a half now that he has been sick. The Physician's Assistant ordered him some more antibiotics. We found out that the antibiotic was contraindicated with another med and he can't take it anyway. Hopefully this matter will get straightened out by tomorrow night when John is supposed to start a new antibiotic.
John has a follow up appointment on Monday, hopefully he will be substantially better by then. I don't know. His fever just spiked again a few minutes ago.
Okay, so what's going on with me? I've been running around trying to do a lot, LOL. I am so behind on chores, errands, etc.
And my shoulder and arm have been killing me. I have been going to Occupational Therapy and working really hard. I was given an extra week by my Orthopedic doctor to get my shoulder/arm in shape, to try to avoid surgery. But I don't think I will be successful in avoiding surgery. I have made tremendous progress, yes, but don't see how I can avoid having the surgery. This is not a bad attitude, it is just a fact. Maybe I am wrong. We will see. I am working SO hard. I am slightly discouraged I guess. I let the therapist stretch my arm until I am in severe pain every time I go to Occupational Therapy. She does it for maybe 20 minutes. Sometimes I scream a little bit while she does it, and say "you HAVE to stop now". Then she stops. Sometimes, LOL. Sometimes she waits a few more seconds before she stops. Ugh.
So we will see what happens in the next few weeks. I don't know what the recovery time is for that surgery, but I just don't have the time to have an operation right now.
So that's about it. I haven't had time to have fun. I would watch a movie tonight just for fun, but I keep having these narcolepsy fits. As a matter of fact, I started writing this entry well over two hours ago and am just finishing it now, because I keep falling asleep. I can't stand this Narcolepsy.
Okay, I guess that's it for now. Sorry I don't sound real positive tonight. I'm mainly just tired. And I am trying to get off this entry. My narcolepsy is so bad tonight that I keep falling asleep and this entry has taken me over 2 hours to write, maybe three. I hope I have not made a bunch of errors in this entry, LOL, I am too tired to go back and read.
Okay,so that is me. I really am fine, though. Just tired. If I could just get past this narcolepsy...
Love you all, Krissy :)
Written by fisherkristina
Permalink
| Blog about this entry
| Add to del.icio.us | digg this
This entry has comments: Add your own
|
