It has been 2 weeks since my last update so I thought today would be a good day for a "Week in Review".
WELCOME AND HELLO!
First off we have had a number of new readers and subscribers that joined us this week. I wanted to take the time to say an official hello. I have sent you each a welcome email so please feel free to email me if you ever have any questions (aaronofford@gmail.com).
WERE YOU REFERRED HERE BY SOMEONE
If you were referred to this site by someone please visit the contest page at the link A Time to Grow to submit their name
To save you the time and annoyance of sending me an email I have created a form where you can submit the name of your referrer.
I hope this makes things easier :)
A TIME TO GROW CONTEST UPDATE
Currently there is a 3 way tie for first place in the contest with 5 referrals. The contest is still really close and is anyone's game! Lets see if anyone storms to the front this weekYOUR FEEDBACK IS NEEDED!
The feedback I receive from everyone is so invaluable, So PLEASE leave comments. The reasons it is so important are:
- It lets me know what type of content you enjoy reading. This way I can keep creating the content you enjoy most.
- Equally important, it lets me know if you don't enjoy a certain type of post and then I can refrain from using that style in the future
- It provides me inspiration and topics for future posts. For example, our last Sunday discussion provided me with inspiration for 2 separate posts this week!
THE LONG AWAITED DIAGNOSIS DAY 3 POST
First off let me apologize on the delay in getting this post out. I promise you will see it by Monday Morning ;)
To be truthful I did not realize the toll these posts would take on me. The first two posts of the series not only creatively burnt me out, but aided with the discomfort of some my GVHD problems (more on this later in the post).
None of this has changed my commitment to finishing the story. I am writing the third part of this story over a couple days, I learnt my lesson the first time around. Plus now there is so much anticipation for it that it has to be better than the first two ;)
When I spoke about how your feedback helps with inspiring what I plan to write about, this series of posts is a shining example of this. The response to them has been overwhelming. Because of this I plan to extend the series, slowly recounting the entire past year. I have a rough outline on the My Story page, which I updated recently if you haven't seen it yet. I have no exact plans on the timing of when each section will be completed, but I will continue to work on them I promise:)
A NEW STYLE OF POSTING
As I said the first two parts of my story creatively burnt me out so I tried out a new style of post to get the creative juices flowing. The post was An Insane to Insanely Beautiful Morning and was style a hadn't tried before.
I would love to hear if you guys enjoyed this style or not, so please if you could leave a comment here or the bottom of the post letting me know what you think. If the consensus is you enjoyed it, I will try style once in awhile for a change of pace.
HEALTH UPDATES
It has been two weeks since the last update on my overall health and recovery from my bone marrow transplant. In my last update, my GVHD had flared up quick significantly. Because of this the doctors put me back on an immune suppressants and increased the dose of my steroids. For a layman's explanation of GVHD check out this link - The Truth and Facts About GVHD
MY SKIN GVHD
The increase in medication was not working quickly enough to get gain control of my GVHD flare up, so last Tuesday the doctors increased my steroid (predinsone) to 200mg daily. The reason for their concern was my skin had moved to the sunburn stage and they didn't want it to progress any further.
Thankfully the increased dose calmed the flare up and my GVHD has greatly improved this past week. The doctor's were so happy with the progress that this past Tuesday they reduced my dose back down to 150mg. At this new dose it has continued to be a good week and my GVHD has continued to calm down.
After yesterday's appointment (Friday) the doctor's were again happy enough with my progress that we plan to reduce the steroid next Tuesday. This is very exciting news because although prednisone works extremely well, it has some really nasty side effects. Look out for a future post where I explain the good and bad of prednisone.
MY EYE PROBLEMS
I eluded earlier in this post that my GVHD flare up affected me during the creation of my first two Day of Diagnosis posts. During the GVHD flare up my eye sight got extremely affected. The problem was all of last week we weren't sure if it caused by the GVHD or increased steroid dose (remember those nasty side effects).
My eyes would go from extremely dry one day, to constantly watering the next. The worst part was eyes were constantly blurry and I couldn't focus well, especially when on the computer. To combat this so I could continue playing on my computer I would set the zoom the screen in so the font looked like this. Even this wasn't enough to stop the blurriness, just made it a little better. And so after I finished the first two diagnosis posts I realized I needed to take some time off the computer to allow my eyes time to recover.
This past Monday, I went to an opthamologist to determine if the cause of eye problems was the steroid or GVHD. The good news is the steroids have not caused any lasting damage to my eyes and all the problems can be attributed to the GVHD. The even better news is that as my skin GVHD has calmed down, my eyes have gotten better too :).
DAY 50 AND BEYOND!
Well it is official, I have crossed the 50 day threshold and my body is still making blood :) Day 50 isn't one of the major milestones in the recovery process but it is still exciting to think I have had someone else's cells in my body making blood for my for over 50 days. The main milestones are:
- Day 60 - an aspiration is performed to determine if I am in still in remission. In addition, a peripheral blood sample is taken to determine the amount of Philadelphia Chromosome still in my system. This is one of the biggest milestones which I am sure I will be a little nervous for. Not just for the results but the procedure is not one of my favorites ;)
- Day 100 - I move to other side of the follow up clinic. After Day 100 the new cells in my body should hopefully be fairly accustomed to their new home and the acute GVHD should be almost all gone. After this I will begin the lookout for chronic GVHD.
- Everyday that I am still here making blood and enjoying this life! :)
Sorry for the long update but there was a lot to catch you up on. REMEMBER the contest is still early so keep passing the blog along to people you think will gain something from it. Lets continue using the pay it forward strategy and see how big we can make it!
Plus who wouldn't want one of those gift cards ;)
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Your new style of posting was truly interesting. I found it to be a great read, just like an author who writes a true story. Well done!adl
ReplyDeleteHi Aaron! Glad your GVHD is responding.
ReplyDeleteHi Aaron,
ReplyDeleteI really enjoyed your new style of posting, I found it to be absolutely interesting and stimulating, you are truly are a great writer, you should consider doing this for a living.
Great job and certainly am looking forward to continued reads.
Take care
@adl and Lise - thanks so much for the warm feedback. I am glad you enjoyed that style article. I will continue to look for things that inspire to write in a similar manner. And who knows what path there is for me, maybe one day I will become a writer. I will keep with this and see where my journey leads me :)
ReplyDelete@Jen thanks! I am happy now too but the big test will be whether it flares back up as we begin this tapering process....heres to keeping the fingers crossed :)