Thursday!

Good Morning Everyone!

Yesterday I went back to my Hema/Oncl. Got a CBC and guess what? Down again! 29k, so not so bad as a lot folks. Everything else is fine.

I am getting my first ever IVIG (gammagard) as I write this. Not an issue so far. Just bored out of my mind. I have been walking around visiting with everyone. Very nice people and staff here. It is just a shame that we all do not get to know each other prior to these type of events. It has occured to me that the sharing of time is the most precious gift that can be given. So when you give me yours (time) know that in my heart and mind, I appreciate it more than you will ever know. Just a musing!

Is anyone planning anything fun or special this up coming year?

Have a great day!

Jeffrey

You have such a great attitude Mr.! I can include you as one of many who bring sunshine to the group!

Good Evening!

Well about 1/2 way through the IVIG today, 100 grams dosage, we all got a call from my doctors office ordering another round of Gammagard for tomorrow. Ok, I am flexible! LOL

No side effect, except the needle still in my arm. Pretty straight forward so far. We shall see.

Jeffrey

Good to see the positive attitude.
I made many friends during my IVIG days. An ex RCMP officer who had great stories to tell, an older lady who had no family here and was from a nursing home (she has since been "adopted" by my family); a Hutterite farmer who also had some very interesting stories plus information on the modern day agriculture. There were many more but these people greatly enhanced my life. Oh yes I gave (unintentionally) a floor show every time I needed to unplug and use the washroom - I always made the comment that people would pay big bucks to witness it!!!!
Life gives you lemons so you make lemonade - right?
Good luck, Christine

You guys are so social. I'm a 'pull the curtain and let me be' gal. Never was a very talkative person.

Hi Jeffrey,
How's it going?
We are considering a trip to northern Australia later in the year. Something we've wanted to do for 37 years but as farmers never had the time to get away for long enough. Last year we decided to visit friends overseas instead, so I'm hoping now we will be able to explore our beautiful country. There are many organized tours & boat cruises, however we will most probably drive & camp along the way.
Hope your session is going well & you have long lasting benefits.
Cheers from Down Under,
mj

Good Morning!

All "tubed" up and listing to Nazereth on my IPOD. My nurse today is also a runner, but much younger than me! So far today is good! Colder than anything here! Windchill -20! Sending this your way Sandi!

MJ That sounds so fun! We have been thinkng of a trip to New Zeland, I have a friend there who has just started his medical practice there so we would have free housing! I have always wanted to visit your country. It is so diverse geographically! I thought it would be fun to do a triathlon there if we ever got to go.

In the short run, we are going to Atlanta to see our daughter in about 5 weeks! I am so excited to see her. I really miss my girls...

Pretty much about it for now!

Later!

Jeffrey

Jeffery

Glad to hear you're doing so well, emotionally. I also found IVIG treatments very relaxing- I was away from work all day relaxing in an big easyboy chair. I could chat with my neighbor, read and take a nap (especially with that drip of benedryl before the IVIG). I'll never forget an elderly gentleman, in the next easyboy, telling me how to catch a skunk without getting sprayed (you need two people).

I sometimes think "Why not be joyful today?" Often there is no logical reason for its absence, so one can cultivate joy.

I recall your complaints about prednisone and I shared how it caused diabetes, weight gain and insomnia... but I had about decade long use and most of that time these were not problems ( except for the weight gain). I actually kind of enjoyed the side effects. I was careful not experience road rage or yell at my children during the really really high doses (meditation helped).

And for long periods I would wake up at 3 in the morning, ready to go!

Instead of stressing about it I looked on the bright side of more awake time and got up and got things done- cleaned the house, read and had breakfast ready for everyone when they awoke.

I can be a terrible procrastinator. But under pred not a bit! I was very impulsive! Think of something and do it immediately!

I wish you joy- maybe even steriodal joy-

Mark

I never had IVIG, but I did have Rituxan. I also looked forward to it. I thought I was weird, but listening to you two, I guess I'm not all that strange. For me, it was a day off of work and I could just sit and relax, look out the window and nap if I wanted. Having three kids and a stressful job, that was a huge break for me. I never had time to just do nothing and felt guilty about it if I did....there was always something that had to be done. Being stuck in a chair by myself was a great way to some alone time....I didn't mind at all!

Sandi

I may be remembering wrongly, but am I correct that you've retired from that stressful job? If so, I'm curious how that is going in general but also specifically is the absence of that job stress helping with health issues?

M

You're remembering correctly. I did leave that job on October 4th after 16 years. I still keep in touch with two co-workers and I still hear the stories and honestly, don't miss it at all. I thought I would. I now realize how bad the daily pressure was now that it's gone.

Well, as far as health....I was hoping that quitting would make a difference. But the day I left, I had a boot on my foot and had pneumonia, so it took a while to recover from those. Then I got caught up in dealing with medical issues that I'd been ignoring...and ended up with three months of doctors and tests a few days every week. I finally got a break, but last week was informed that my white cells are all wacky, so I have see my hematologist on Tuesday as an oncologist this time to rule out lymphoma or leukemia. Lupus symptoms have not gotten any better and in fact, cold weather makes it much worse so I've been miserable. I'm looking forward to spring. I'll let you know then. Until that, I hibernate. Thanks for asking!

Good Sunday Evening!

I hope everyone has had a good weekend! I finished the second treatment on Friday. Very uneventful. I have been having some low grade headaches every now and then. Not too bad, just an annoyance. I hope this works at $80 per gram! Today however, I noticed that I picked up a bruise very easy on my left hand. I hope it is not a harbinger of things to come....

My wife and I did our taxes today and shampooed the carpets. You think we don't know how to live in Indiana!

Back for anonther CBC on Wednesday!

Sandi, sending snow your way!

Mark, good to hear back from you! I trust you are well!

Jeffrey

Well, Jeffrey, Punxsutawney Phil said there is going to be an early spring, so you won't be able to send me cold and snow much longer. As I said above, I need warm weather so I'll be counting on you for that real soon.

I did my taxes this weekend too....e-filed for the first time!

Good luck with those counts.

Update!

I got a CBC yesterday and good news! I have platelets for everyone! 539K The IVIG worked just fine. I met with the surgeon that is going to do my colonoscopy tomorrow. We have a plan. Basically if they find anything to remove during the colonoscopy, it will be done, assuming a good platelet level and then I will be admitted to the hospital to make sure no colateral damage has been done. I am comfortable with the surgeon. He seems great, and we are on the same page.

I am currently enjoying a clear liquid diet! LUCKY ME! Coffee and green jello! I am saving the really fine dining experience for tonight! Chicken broth! Fat free of course! I have not had a Philley Cheesse Steak Sandwich for years. But today that is all I can think about! LOL

The rest of the days events go like this: Got laid off effective next week. Cat threw up in spare bedroom, and I did not win the lotto!

BUT! I am still upright and on this side of the dirt and I feel great. Now that I will be laid off I will train more, look for a job, and spoil my wife! It could be a lot worse, I am blessed.

Everyone have a happy day!

Jeffrey

Jeffrey!
WOO-HOO on the platelets...that's great news...sorry to hear about the lay off and the cat puke though
Good luck with your colonoscopy...mine was 3 years ago and I still haven't forgotten the crap I had to drink...pretty much just salty Lemon Pledge if you ask me.

Hey DT!

Nice to hear back and thank you! I am drinking the stuff as I type. What a wonderful evening I have planned! At least Indiana University basketball is on! I am alumni!

Anyway, how are you doing now?

Jeffrey

Hi Jeffrey,
Well done on your counts!
Hope your procedure goes well. A couple of years ago I saw a specialist to have a colonoscopy as I have family history of bowel cancer. He was quite arrogant & ignorant about ITP & wouldn't do it unless I had my spleen removed first!! So now I just have an annual stool test . . . & my spleen & I are still together :silly:
mj

Good Afternoon Everyone!

Well here is a recap of today. I got myself "prepped" for the colonoscopy. This should have been called "you will be up all night" prepping! LOL Anyway, got to the hospital endo center and they had all communicated very well and were waiting for me. My blood was drawn and cross typed. The counts were 440k on my platelets. Down from 539 36 hours prior but still good. The procedure went without a hitch. I went to sleep and dreamed of running! True! Anyway, Doc found 2 very small polyps and cauterized them away. No issue at all. I also had a little direticulitist (sp)but again no issue. I am to go back in 3 years. Dr ElHassen was great. First Class as was all the hospital staff. It was as pleasant as this could be. As soon as I got done my wife took me to Cracker Barrel for pancakes! I was HUNGRY!

I will be going back to my oncologist at the end of the month. Now we are going to talk about the future!

I will be back to training pretty much full time now. It is a lot of work being a Trophy Husband!

Every one have a great weekend!

Jeffrey

meredithjane wrote: Hi Jeffrey,
Well done on your counts!
Hope your procedure goes well. A couple of years ago I saw a specialist to have a colonoscopy as I have family history of bowel cancer. He was quite arrogant & ignorant about ITP & wouldn't do it unless I had my spleen removed first!! So now I just have an annual stool test . . . & my spleen & I are still together :silly:
mj

Hi MJ!

Good to hear back from you! I think you did exactly the right thing. How are things are on your end of the earth?

Jeffrey

If my fever would ever go away and I could get rid of the flu (day 5) I would be okay. Next platelet count is Monday so we'll see if the flu messed with them...I sure hope not.

G'day Jeffrey,
All good here - I too am running . . after everyone else it seems!
But we did manage a morning out in the boat on a beautiful calm day & caught 16 large blue crabs!
Love your upbeat attitude mate.
mj

Hi Everyone! Haven't had a chance to talk to many of you directly being new to the forum (and fairly new to ITP as well). Just noticed that there are some keen running among us - great to see as I am a keen runner myself, preparing for the Sydney Half Marathon in may. Also, someone mentioned visiting Australia, let me know if you're coming through Sydney. Thanks for all your input and the positive attitude. Sandy, you're such a great help and support on those forums I hope your results come out all right and go from strength to strength, fingers crossed.
As for my update, I still haven't had the courage to buy Prendisone from my prescription. Doing an iron infusion and bloot test on Wednesday, plenty of bruises lately plus one big one with a big hard lump on my arm (how do you get those?!) so a bit apprehensive of the counts!

All the best to you all and thanks for being around on this forum.

Ania

Ania,

Don't be too stressed out if you do have to take prednisone. You might do fine and it can raise counts quickly. If you are like me you could get a really clean house out of it! My house is clean enough now so hoping to get my dosage tapered after dr appt tomorrow.

Dru

Thanks Dru!

Ha ha yes, that's the thing, the house is clean enough already Though I wouldn't mind some extra "kick" to help me train for the half marathon...then again, someone mentioned before it's harder to excercise while taking prednisone.

Let's see what Wednesday brings!

Ania

Thanks Dru!

Ha ha yes, that's the thing, the house is clean enough already Though I woudn't mind some extra "kick" to help me train for the half marathon...then again, someone mentioned before it's harder to excercise while taking prednisone.

Let's see what Wednesday brings!

Ania

Ops, not sure why I posted the above message twice

Dru - how did your appointment go?

Ania!

So glad to hear from another runner! Good for you on the staying active with ITP!. Prednisone is a challenge but it can be manageed. Beware of the weight gain that will probably occur. I went from 180 to a peak of 228 but I am losing now. I can give you a lot of the details of my training if you wish. I am going to be running a 5k on this Saturday if the weather here is decent. I am running the Indianapolis 500 Fesitval Mini Marathon (1/2) in May and I hope to run a full marathon in June and a 50 mile ultra in September and finish with the Monumental Marathon in November. I will also be doing a few triathlons between the running races.

Let me know what you are doing for your training!

Jeffrey

meredithjane wrote: G'day Jeffrey,
All good here - I too am running . . after everyone else it seems!
But we did manage a morning out in the boat on a beautiful calm day & caught 16 large blue crabs!
Love your upbeat attitude mate.
mj

Hi MJ!

I have not been on for a while. We have been visiting our daughter in Atlanta, GA. It is warm here! Please feel free to send me seafood anytime you have excess! I am going back to the Oncologist on Thursday. I should know a lot more about my path forward after that! I am glad to hear that you are well! I hope the family is doing well too.

Jeffrey

Hi Jeffrey,

Wow you're training for some serious races, that's great to hear! Have you done those distances before? I've always been active and I am trying to keep it up as much as I can. I have done one half marathon before the ITP times so it was a bit easier.

My training consists of three training sessions a week: one shorter and faster one, approx 40-45 min at approx 6min p/km one 1 hour one at a medium pace and one longer run which I keep extending every month.
Today I am suppose to do 1 hour 45 min. Any tips/ training inspirations are welcome!

Running is like meditation for me, resets my mind, puts it in a more positive frame and motivates and prepares me to cope with daily challenges better. Plus you can't get any bruises from it!

Let us know how your appointment on Thursday went.

Cheerio!

Ania

Hi Ania!

Actually my training looks a lot like yours. I try to keep my running down to about 20-25 miles per week. I strength train 6 days a week. I also bike 3 days and try to swim 3 days. I try to take one day off totally for recovery. It is a pretty rugged pace but I like it! I would love to do a triathlon in your country some day. When is your next race? I have a triathlon page on FB. I usually post my daily workouts on it and I will be starting to post my diet on it too. It helps me to stay focused if read it myself. LOL

How is your ITP doing? I will putting a new post up in a bit. I have been very busy lately but getting caught up now.

HI MJ! Hope you are well! I have now said hello to all my Ausie friends!

Jeffrey
FB Jeffrey Writtenhouse Triathlete