The Reset Button of my Life – My Recovery Diary 2017 - Part 7

germansailor (70)in #life • 7 years ago (edited)

Can I actually stay anonymous on Steemit? – At the Gulf of Venice on 08.24.2016.

Prequel.

In this multipart prequel I will remember the events starting Juli 23rd 2016, the day I registered with https://steemit.com/, until January 1st 2017, the day I decided to publish my "Recovery Diary 2017- The Reset Button of my Life". Without these two events this series of articles would not exist. You would not be able to read them and I would be missing an important power source. Since my mind has currently wandered off to January 1st 2017: this is my new year's resolution for 2017: I will recover! Just this one thing. It will be a big enough challenge.

This article is also available in German.
Dieser Artikel ist auch in Deutsch verfügbar.

Steemit

Never heard about it!? What is Steemit!?- I'm gonna have to strike out to explain this, but I will try to keep it short.
Steemit is a brilliant synthesis of Social Media Platform (like Facebook) and Cryptocurrency ( such as Bitcoin ). There are differences though. While Facebook belongs to one person (Mark Zuckerberg), Steemit belongs to no one. The Software behind Steemit is Open Source and the project is taken care of by some dedicated programmers (everybody can contribute). Of course there were and are plenty of sponsors who contributed a lot of money to this project and own their shares (similar to stockholders), but Steemit does not belong to those sponsors. Steemit is the alliance of those who willingly contribute to the project, develop it and democratically administrate it.

When you register for Steemit (for free) you can follow interesting posts by other Users about a variety of things. You can gain friendships and of course, write posts yourself. Just like Facebook. There even is an equivalent for the "Like Button". At Steemit it's called "upvote". Now it's getting exciting: Steemit is also a Cryptocurrency (well actually three: Steem, Steem Power and Steem Dollar- Further Explanation here)- digital money. For every upvote a certain amount of this digital currency is deposited. To both parties: a smaller amount goes to the person who voted, also called curator, a larger amount goes to the author who's blog had just received an upvote (a "like"). The deposited amount can be as small as a trickle of a cent or as big as a few dollars- it's all up to the reputation of the curator. The more significant and interesting the blog is, the more votings and Steem Dollars it will receive.

The Result: Authors are being rewarded for their good work by Steemit. Readers who upvote good articles are rewarded in smaller amounts as well. That is pretty much the biggest difference to Facebook: At Facebook, all earnings go to Mark Zuckerberg. At Steemit all earnings are evenly deposited to all active members. I think this is brilliant.
The access to Steemit, the social media platform and digital currency, is pretty simple. You don't have to install anything. Your Steemit Account is also your wallet (digital wallet) and your User Name is also your how you send and receive Steem Dollars. It couldn't be easier!

On Juli 23rd 2016 and during the following three days I publish a few articles on Steemit. Mostly about technical things regarding Steemit. Since Steemit is constantly developing some of it is probably out-dated by now.

1st hospitalization, July 27th 2016

I actually feel relatively good!

On Wednesday, July 27th 2016, I have to be hospitalized at Kuechwald-Klinikum Chemnitz, department of haematology/oncology. My Primary Care Provider discovered that my blood count was a disaster. The print out said Life Threatening. I will be examinted thoroughly: blood withdrawal, EKG, Ultrasound and a bone marrow punction in my iliac crest.

Thursday, July 28th 2016: The bone marrow punction has to be done again. The first one did not deliver enough usable material.
Friday, July 29th 2016: During ward round I receive the diagnosis: High Risk MDS RAEBII with 20% bone marrow blasts in my bone marrow. I can hear it, but just don't realize it yet.
Saturday/Sunday, July 30th and 31st 2016: I am allowed to go home for the weekend.
Monday, August 1st 2016: I have to go back to the hospital. More examinations follow.
Wednesday, August 3rd 2016: For the first time I receive two bags of concentrated erythrocytes to up my hemoglobin count. I feel 10 years younger afterwards.

Erythrocytes IV to stabilize my hemoglobin count.

Thursday, August 4th 2016: I am sent home. I have to process all of this. I search the web, read brochures and find out about the severity and consequences of this illness. I have mixed emotions about this. Somewhere between desperation and hope.
Monday, August 8th 2016: Outpatient consultation with Dr. Herbst. She has good news, if you can really say that in my situation. She spoke with Prof. Dr. Platzbecker (one of the Specialists for the treatment of MDS) of the University Clinic of Dresden and was able to place me in a medication study. It is about the treatment of MDS patients with the medication Vidaza and the effect it has for their life quality.
Dr. Herbst has high expactations for this medication and advices me to join the study. She sets up an appointment with Prof. Dr. Platzbecker at University Clinic Dresden for Wednesday, August 10th.

Wednesday, August 10th 2016. Prof. Dr. Platzbecker, a very likable person, explains the medication study and the medication Vidaza. Although Vidaza is a chemotherapy, it is a gentle one. It operates on a genetical level during the cell division and is supposed to reactivate the programmed cell death of mutant cells (which obviously does not work for my stem cells anymore). The Vidaza treatment is to be carried out in cycles: In a duration of seven days from Monday to Sunday, you receive shots subcutaneous in your belly twice daily. Then you take a 3 week break until you start the next cycle. You need 4-6 cycles until you see actual results in treatment. This treatment can only suppress MDS. It can't heal it. We agree that my first cycle will begin Monday, August 29th 2016 since I will be on vacation with my wife and two other couples from August 14th until August 28th.

In front of the Rialto Bridge, Venice on 08.23.2016. I am still considering rather it would be wiser to stay anonymous on Steemit and if that is even possible.

Is the vacation in August 2016 going to be my last sailing trip? Fears are bothering me.

Today, it is Saturday, January 14th 2017 (11 days to stem cell transplantation).

Sabine and I on January 14th 1984

Today exactly 33 years ago, Sabine and I said "yes". We are not celebrating big today. My daughter Julia and my granddaughter Lotta are visiting this weekend. What could be more beautiful than this?

Julia and Lotta. - Sunshine in my life :-)

With this Recovery Diary I want to not only write about my progress (or regress). Most importantly, I want to reassure those who are in a similar situation. No matter if it is yourself, a member of your family or a friend who is affected.

Continued, Part 8: Living with MDS. - I just wish for more time.

You can find the previous articles here: