Happy New Year

I think I passed on new year wishes a post or two ago, but I'm too lazy to read my own blog and find out.

No real news from Orion today. Breakfast out with friends, rehab, McDonalds for lunch, and a nap. It's not necessarily a bad thing to sum up an entire day in only one sentence. Especially if it is the last day of the year.

Happy New Year, thanks for pulling for my dad in 2008, be safe tonight and into 2009. See ya next year!

Love, Jon

Back to comfy Orion

You have no idea how hard it is to come up with titles for this blog when every other event is "Going to hospital" or "Going home". I'm open to suggestions.

Dad is back at home in his recliner and resting from resting. Both of them are still fighting colds which I can't really even imagine how that feels after getting chemo. There is nothing medical to note. His INR level needs some work, but we've discovered that it seems to be affected mostly by exercise and diet. Funny thing about exercise and diet is that when you don't feel good you don't exercise and eat right, which makes your blood go funny, which makes you not feel good. It's a vicious circle.

I almost forgot...if anyone who reads this knows or sees Kirby or Mike Backstrom...thank them for meeting us for breakfast the other day and buying. My dad and I both agreed there was no way we were gonna beat them to the check. Larry is buying next time. 

Jon

Getting used to it....

Dad had his second and full round of chemo today and it has caused a slight detour.

He's back in the hospital.

Now....before you get too upset, it is probably short term and nothing to worry about. After he finished receiving chemo and was headed out the door, he developed a severe chill and a bout of shivering. The doctor wasn't exactly sure what it was, but since they are being very careful with him and wanted to make sure he didn't have an infection, they admitted him to the hospital. They were debating whether to send him, but at the end of the day, better safe than sorry. He also has a cold that he contracted while we were there. Being around that many people in the winter time is bound to have implications and it seems he wasn't the only one to get the cold. Tim and my mother also have it. 

The "B" drug in his ABVD treatment is known to give patients a fever and could possibly be the culprit. He didn't get this drug in the first round, so it might simply be that. He was running a temperature while he was there already.

Anyhow....my family is now home safe and sound in Tampa, and already enjoying the 75 degree weather and our own beds. We hope everyone had a great Christmas or Holiday time and let's all hope 2009 provides better health for not only my dad, but anyone afflicted with such difficult problems.

Love, Jon

Travelling...

Hello all...no news of note. Dad had a good week with everyone home. We took the ENTIRE family down to the mall for a family photo...what a zoo. There were 10 of us and it took like a thousand shots to get a picture with everyone not looking foolish. I'll post some Xmas photos in a day or so.

Ray - two notes for you....I'm most of the way home now and the jinx continues. After we took the family photo we headed out to eat...lo and behold...flat tire on mom and dads car. The kicker is that the tire was brand new as of 12/9.

Thanks for the notes everyone else...Thanks for calling Mike. I'm sure he will be glad to hear from you Diane.

Chemo tommorrow.

Another day, another dollar...

Ha....Dad has been breaking out all of his old sayings so he can continue to be the funniest guy in the room. Every morning he has gotten me with the 'ol:

Jon: Hi Dad - How did you sleep?
Larry: Lying down.

We went to rehab today...physical, occupational, and speech. He didn't like the physical therapy today. He seems to think the guy put him through the wringer. Generally the upside we have seen lately is that he has been staying alert all day and getting up fewer times in the night. Those two things have him in a better schedule and, I think, feeling better. For those of you that talked to him the other day, thanks for calling. Even though he gets emotional he likes to hear from people other than the usual suspects.

Chemo is still scheduled for 12/29, so...hopefully round 2 can get done without incident or drama.

Staying home for the holidays!

Quick update.

Doctors appt. went great. His blood work is solid and he went to rehab prior and did well. The doctor thought he was looking better and that he would like to give him the "regular" chemo treatment for 12/29.

So....we are all home for the holidays. My dad kept saying he didn't want to go to the hospital and I think as we neared the doctors office he was getting more and more scared of the prospect.

THANK YOU! - I have no doubt that our collective efforts helped.

The weather is a little treacherous, but we are settled in. The snow blower that someone mentioned in a previous comment is indeed not working, but I have reverted to my old high school days of shoveling the drive. I think they added about 50 feet to the driveway since I last shoveled.

Oh...and just to keep the string of broken things going, I stepped out the front door yesterday and sprained my ankle pretty badly. My dad and his walker and me limping look quite a site. Two invalids trekking through the snow.

Thanks again...Merry Christmas to everyone.

Love Jon

It's working...

I'll give you guys the credit for the day so far. Thanks for the messages and best wishes.

My dad and I went to breakfast this morning at Dennys and met with a couple of his friends for coffee. We had a good time, got out of the house, the temperature is a balmy 20'ish degrees....good stuff. So, for 4 hours today things are looking good. One downside....using a walker in the snow is an interesting adventure.

Curious Murphys law development. Here is a list of things that have gone wrong around this house....it's like a test of some sorts.

• Shower handle broke in the only Larry accessable shower.
• Dishwasher went out.
• Car mirror mysteriously broke off my parents car.
• Fireplace burner went out.

All of it is fixed, but it's a good "When it rains, it pours" story.

Jon

Christmas wish

Back from the Dr. I'm not really sure how my mom accomplishes these trips 5 times a week. I guess having -2 degree weather wasn't much help.

There are a few things going on for those of you that wish to click around and figure out what it all means. His platelets are low, which is a common problem for chemo patients. This makes him more susceptible to bleeding, and along with his coumadin issues it is a real concern.

Here is where I need some Christmas wishes. Dad is scheduled for another appt. on Christmas eve. However you can contribute.....lets hope that the tests done on that day don't mean that he will have to go to the hospital on Christmas. Granted...I would rather he be wherever he can be best cared for, but the Christmas spirit around the house is running a little low.

Thanks for your comments, well wishes, and prayers. I have been reviewing the visitor list here with him and I know if helps keep his spirits up.

Jon

Home...everyone

Sorry for the lack of info. lately. I've apparently been driving across Siberia. It is clear to me now why we moved to Florida. No offense to those of you that love snow.

I'm sitting here in Orion, having breakfast with Dad, and trying to figure out how they operate around here. Dad is doing....ok. He is obviously not his old self, but he is also kind of stuck in a rut a bit. I can't quite put my finger on it, but I think he's pretty fed up with the whole ordeal. We are taking him to the doctor later to give my mom a break from the daily grind, and she is going to get a long needed massage.

Since I'm supposed to be working, I'll leave this as my update to everyone, but I'll check back in later after the appt.

0 degrees...seriously...

Headed back home

Quick update since I'm packing to head home myself....they are leaving the hospital through the revolving door. His hemoglobin recovered well to over 10. This is a good sign since prior efforts to get his anemia to budge took a lot more time and a lot more blood.

He is going to eat his insurance company paid lunch and try to avoid further problems. I told them to save additional drama until I can get there. I'm aging fast at this point.

Jon

Frustrating.

If anyone would like to just scroll down to the post labeled "Back to the Hospital...briefly?" you can probably use that as an update for today.

Last night my dad was complaining of a headache and was quite tired....so...off to the ER we go. By "we" I mean my mom and my dad. It then becomes an exercise in waiting around for this one and that one to stamp this paper and get this paper signed.

Currently my dad is in room 156 at Trinity, Terrace Park, in Bettendorf, IA. This is apparently in closer proximity to his hematologist / oncologist, who also was the attending physician last night when they got there. He has had two units of blood to increase his hemoglobin levels, and all scans that they did were normal for anything troubling. I believe the plan is to wait to get the current blood tests back and to get him home if everything is stable. His headache had cleared up after sitting around the ER for a while. Funny...but that would have given me a headache.

I will let everyone know later how this goes. My mom feels it was probably a good thing since the weather there was going to make it rough to get into an appointment today.

Snow, chemo, and other assorted things...

Well the daily update is as you would expect. Similar to other daily updates. He had rehab today to combat the effects of the stroke from late October. The people who run him through his paces seem to think he is doing well and did a great job today, but my mom thinks he is tired. He told my mom that they said he did such a good job the other day that he didn't have to exercise any more that day. Seems he might now also be inclined to bend the truth a bit.

He is scheduled for his next round of chemo on 12/29 and more blood tests, tommorrow, 12/18. It's important to get tommorrows tests in as it is hard to get help or attention from the medical community on a weekend. Anyone tuning in from the Quad City area...keep an eye on the weather for me. I might have to help them come up with a backup plan to get into the doctors office.

Jon

Not Larry related....just some notes.

Since I haven't had a chance to get the update from Orion today I thought I would add some information regarding the setup and best way to send information back.

I removed the "Enter text here" window in the upper right corner of the blog as it didn't seem to work and I think some of you tried to send some information via that "tool". If you want to ask me to change or add some things you can either e-mail me or click the titles of any post and it will open a comment box.

I am trying to fix the information included when posting to add the date as well as the time, but I'm no web programmer and it seems I'm a bit stuck there. I'll include the date as a tag to the post so it will show on the archive links.

Ok...kinda geekish, but here is a map of visitors from yesterday. I know my dad is a popular guy, but it's funny to see how the word spreads. Sorry for skewing Florida...every time I change this thing it gets a little greener.

Lastly...at the risk of sending too much information I'll just apologize if updates to this site are clogging up e-mail or are too little, too often.

More of nothing...

I have requested that my dad put me out of the blog business by not generating any news or information. So far, so good.

My mom says he didn't have the best of days yesterday, but went to rehab this morning and seems to be doing well today. She asked him if he could feel the chemo eating away at the bad cells....I think I tuned out the answer. More rehab and appointments to determine Hemoglobin counts and his INR. There's another link for those of you that want to have discussions in our world. The talks pretty much revolve around what is this number and that number and when do we get to have this discussion again.

We (my family) are still on for the 18 hour drive from Tampa, to Orion starting Friday. We hope to be there sometime Sunday and from there I've been told that I'm on driving and appointment duty. Anyone know of any good books? 

That's all for now. 

Jon

Ummm...sorry "followers"

I hope people that were subscribed get this or are able to resubscribe. Obviously I changed the layout, but the one item that didn't "follow" was...you guessed it.

I'm really sorry to make you login and follow again....There were 14 people. Come back!

No news is good news....

Update is...that there really isn't much to say. He is resting at home after a trip into the Quad Cities for his shot. No reports of anything different than the usual. He told me he felt terrible today, but I think he has adopted that as his stock answer. If you talk to him...avoid the "How you feeling question"   : ) - you won't like his answer and it makes you stumble around what to say next.  Ha.

Apparently the weather is still hindering travel. I knew there was a reason I moved to Florida.  I have passed along everyones best wishes....mostly by name, so you all get credit for being here. 

That's it for now.

Jon

Thanks and Contact Information if needed

I also wanted to thank everyone for their thoughts and prayers as Dad continues to go through treatment on his way to recovery. Thanks to my brother, who definitely knows more about the technical world than I do and any links to information about Hodgkin's and the treatment process is very much appreciated as I don't have the patience to find the information and rely on him for quick links to those websites that provide a better understanding. I wanted to post my information in case anyone needs to get a hold of us while Jon is traveling or working, if that is what you call it, lol, just kidding. (H) 618-467-2947 (C) 618-792-8462. Thanks, Tim.

1 down...

I keep forgetting to ask how many more to go. I know this is a pretty uneventful post, but I think I will trade 1000 uneventful ones for the types of information we've had lately.

Apparently everything went fine giving him his treatment. My mom said she thinks he slept through the whole thing. I guess if you have to have toxic chemicals pumped into you that would be the way to do it. They have to go back "into town" for more blood tests and some medicine to help maintain his white blood cell count tommorrow. One of the drawbacks of living in Orion is that every doctor visit is a mini-ordeal.

My mom is gonna read this and think I'm crazy, but I think she's feeling a little better and sounds better on the phone. 

That's it for now. Catch everyone later.

Jon

Let the drugs begin...

and so it starts....Funny, but it struck me last night that today's treatment is the first time he is being treated for his actual disease rather than all the symptoms. I think right now dad is getting tests and anti-nausea medication out of the way in preparation for about 3 hours of chem treatment. Sounds like he is doing well and everything is going according to plan.

I ran across another blog while I was trying to figure out all the drug acronyms and side affects and figured it would be good to post here. This girl has written a good account of what his chemo treatment is all about, the drugs, side affects, real life stuff. She writes about it from a patients perspective and its quick and easy to "get it". Anyhow...if you get a chance and are interested it's good information.  Running from Hodgkin's

Dad should be home later today. It's icy and bad weather in the Quad Cities, so he's got that to look forward to. More updates soon.  Jon

Some recovery!

Hello everyone,

First...the update. Things are looking up again and it seems we are back on track to start chemo tommorrow bright and early. Dads hemoglobin has recovered after a couple of units of blood (8.9) and whatever was causing this small slide seems to have calmed down. Sooooo it seems he will be discharged tommorrow directly to his chemo appt. and then back to home. 

Thanks everyone for signing up as followers of the blog, I know my dad will appreciate everyones concern. I have given my brother access to the blog so that between the two of us we can get the most information out. He just has to figure out how to sign in.   : )

I'll let everyone know tommorrow how things went and we can go from there. Good night!

Back to the hospital....briefly?

Don't get too upset at the title, but it is a little setback. Last night my mom got a little concerned about his energy level and decided to take him to the emergency room. The last couple of times that he ended up in the hospital things went too long and his condition was rough upon arrival. This time it would seem that things were caught before it got too bad. Those of you that are more up to speed know that he struggles with a couple of blood issues. Anemia, which is a hemoglobin deficiency, and was measured at 7.4 last night (normal is around 13) and also a blood thinning agent that they have to keep in order due to his heart valve replacement a few years ago. This measurement was relatively normal at 3.0 and is a good sign.

I talked to him briefly and they are getting ready to give him his second unit of blood, the treatment for his hemoglobin count. They had arrived in the emergency room around 7:30 p.m., he got some blood at 4:00 a.m. (yes you read that right) and now, at 8:30, he's getting #2. The doctor will be in to see him in a couple of hours and we will go from there. He isn't in his "usual" hospital in Rock Island, but is in Davenport, IA. That's as much detail as I have strangely.

It is possible that the doctor will decide to keep him in until he starts chemo on Monday, if that is a go, so I'll let you know when I do.

Sorry for the bad grammar, poor spelling, and otherwise struggle with my native language....getting the info. out here has been the priority. That's it for now. Feel free to call me at 813-317-0751 if you need more info. I'm at my in-laws, so I'll add "borrowed computer" to my excuses for run on sentences. : )

Today...check the date, cuz who knows when "today" is.

Not a lot to report, but if I don't keep posting I'll feel bad.

I talked with dad this morning. For those of you that haven't talked to him, he is a little more emotional than he has ever been. Don't be surprised when you do speak with him that he gets upset and teary sounding. I'll ask him when I'm home what it is he gets upset about, but I think he just misses having everything normal. I'm sure he would rather talk baseball or something else than how he is feeling that day, how tired he is, or what's next. I try to keep it lighthearted and eventually he gets around to being more like himself.

Chemo starts at around 8:45, Monday December 15th. He is going to have it done outpatient at his doctors office and will take a few hours. I think my mom said that the doctor is hoping to see some results in only a few treatments. He will be going every two weeks for a while. I'll have to get the exact schedule later.

Let me know of any messages to pass on. Me and my family are travelling to Orion next weekend and hope to be there by 12/21. It's quite a drive...one that I've never had to make. Too bad the frequent flier miles disappeared so quickly.

Hope everyone is well. 

Jon

Missing links...

Jen tells me I just decided to skip out on the history lesson I was teaching, so indulge me while we get back to how we got here.

After receiving the diagnosis of Castlemans (see early blog post) we all ran to our computers to look it up. By now you may have already done the same thing and relaized that you can pretty much learn all they know about Castlemans disease in about 5 minutes. It's rare, uncureable, and it's anyones guess how you get to treat it.

The biopsy tissue was sent off to the Mayo clinic in Rochester, MN for a more thorough review and second opinion. This process is tantamount to starting over as one hospital has to package and send the tissue to another hospital. I think they may have used one of the modern parcel services, but the two weeks that it took to get the second opinion still has me baffled. If you have read my opening blurb, you can pretty much surmise that the second opinion showed that my dad had Hodgkins disease. We didn't know whether to be skeptical or excited that this was the new diagnosis. Most of us knew that Hodgkins was a much less mysterious and treatable condition, but now we had to go back and study all over again.

He is undergoing rehabilitation to recover from the stroke mentioned earlier also. Initially he had some speech trouble, but most of his remaining struggle seems to be limited to keeping steady on his feet and staying awake.  I think this covers most of the "How we got here" info, so I'll try to keep it to the present. 

Let's get rolling.

Here goes with some new information....hopefully enough people get this to find it useful. PLEASE use the comments and my e-mail to let me know what I'm missing and I'll do better.

Dad had a PIC line inserted today for purposes of starting chemo. Pretty sure that is starting next week. Some useful blog huh? The type of chemo he will be undergoing is referred to by its acronym of drug names, ABVD, and as far as chemo goes, it isn't considered super harsh. The link from the acronym best tells about the side effects, but for some reason dad is worried most about losing his hair. I guess he's worried that he might end up looking like Paul. Sorry Paul, it had to be said.

A lot of people have been asking about the stage classification of his condition, but so far the doctor hasn't committed to providing it. This is kind of a pain in the ass, but I guess it really doesn't matter in the overall scheme of things since, as my dad likes to say, "It is what it is." If you look at the staging criteria of Hodgkins disease you can probably get close by just knowing that the lymph nodes in the chest seem to be the affected ones and that there is some suspicion of shady areas of bone....but don't quote me on that. Either way the disease is still very treatable and it beats the hell out of our Castlemans debacle.

That should cover it until I hear from others about what they need to hear and know. Thanks for stopping in.

Jon

A little history...

I'll probably get some of this wrong, so don't quote me for historical purposes, but 
I wanted to get everyone up to speed that might not know why this is here. My dad would probably argue that you are here simply because of the inspiring title of the blog. Sorry dad......while they may love you, they are here to check up on you, find out what Dr. is giving you the business today, or to get incriminating information to use later.

About 6 months ago my dad started to lose a little weight, lose a little energy, and generally, complain very little about it. Those of you who know him know that this is his style. After we all spent 3 months discussing his weight loss, a persistent cough, and the new lower energy Larry, my Mom convinced him and probably a few doctors that something more needed to be done. Without going into a thousand details or telling you things about a PET scan that I would just be stealing from the web, we found that there were some lymph nodes that needed a biopsy.

Following the theory that "If you know you might be sick, then you might as well act sick", my dad, in quick succession, had his hemoglobin go a little crazy, was transfused with a LOT of blood, had a mild stroke, and spent some quality time with the nurses of 7 south at Trinity Medical Center, Rock Island. Oh yeah...they managed to sneak in the biopsy while he was pretty much too sick to care what they were doing.

Now....apparently when you have a biopsy, they take the tissue, stick it under a microscope, type up a report and send it back to your doctor. This is all theoretical. I can't speak to what really happens, but while the above would seem something that could happen in a day or so....it really takes a couple of weeks and a lot of stress.  Eventually we received word that my dad had some mysterious and rare disease called Castlemans disease. I guess this is a good place to stop a post called "A little history" because that diagnosis is soon to be the same....history.