Sunday, 24.02.2019
Hello my dears,
I’ve been in Moscow for a week now. What happened, where do I stand and how am I?
The examinations were completed successfully and evaluated the next day. This day I used to visit my dear mom in the hotel … What an exciting day that was!
No, that’s not Mama’s hotel;)
But it is a small leisure and cultural center next to the hotel. You can visit a candle workshop, there is a bread museum, etc. We were in it for a short time, I bought a Matryoshka (the background of which I will tell you a few posts later) It should document my healing process A great idea, the wonderful man who recently entered my life, I’ll tell you exactly what the Matryoshka is all about when my stem cell birthday is up to date).
Then it went to the mall to buy milk, crafting material and a phone card. Since then I have left the forces and I once again realized how glad I am that the treatment starts now …
Back at the hotel I had a delicious Coco Jambo cocoa with marshmellows and a piece of meringue! I love meringue! I did not have any more, absolutely great.
And then we actually wanted to take the bus back to the clinic – to get routine and not to go by taxi. Although it costs almost nothing here, but bus travel is simply more useful for this long period. Unfortunately, locating the stop on Google Maps did not match reality. And so we have long been erring through the area, accompanied by the Russian ice wind. After we had walked much too far and the few Russians, who understood a few words of English, had sent us farther away, my legs wanted to surrender the second time – and my mood has given up accordingly – if we then At least they would have found a bus. Nothing. Well. With a lot of noise back to the hotel.
There we met Kristin from Norway and her husband in the lobby, I know them both from Facebook and we met them yesterday. Kristin has her treatment at the same time as mine. Both are sooo nice and full of good energy. Kristins Göttergatte organized two glasses of champagne and the world was fine again! On life, on success, on Moscow and on this beautiful, but exhausting day! 🥂
Phew … – I’m right back to the clinic by taxi. Finally feet up!
The clinic is state-controlled, fenced, secured by gates and guards. Di crime was very high in Moscow until the 90s, there were many gangs and raids. Since the guards, who by the way are merely present and at least not obviously armed, the situation has eased today and you just feel very safe. I came to the clinic more or less easily with my document in hand. Inside, I realized then that somehow there is no main entrance … There is no official entrance at any of the many houses … only locked side entrances. So far I have only been guided underground, so I had no idea WHERE I am or had to go. On my way out today I was accompanied underground to the driver … Now I was standing on an unknown dark clinic area without lights or entrances. So again wrong around (I had only just, juchä and stick with love legs 🙄). Oh man. And then I met a woman, whom I held against my written in Cyrillic paper “hematology”. She then took me through one of the side entrances to a keeper. He was very friendly and motivated to accept me … I then told him that I have already been accepted! I just want to go to my room. I should please wait, the recording is not immediately, you have to wait …. I AM already recorded!
Beloved, what a day that was. Eventually, I reached my room and lay in my bed. 🙏Oh man.
The examination results the next day were positive. I’m very healthy – except for the MS. The treatment is therefore nothing in the way. I was again informed about the risks. And I was told that the MS is not cured but stopped. It’s an indefinite stop – maybe 1 month, maybe 1 year, maybe 10 years … maybe 20 years. And yes, there have also been patients whose MS did not come back, but these were very few. The stop is the goal of the treatment, an improvement of the symptoms are not self-evident. The body is only theoretically and not able to regenerate all lesions. In my brain, I have 20 lesions, including so-called “black holes”. Black holes are encapsulating scarring, the interior of which is hollow. This will not repair, it is and remains a hole. But all these 20 lesions are older anyway, I suppose I got them 10 years ago. Really noticeable they did not make or only briefly. The situation is different with my numerous smaller lesions in the thoracic and cervical spine. Especially the lesion of the cervical spine could cause problems. It is not very wide, but long. If it increases in volume, it can lead, inter alia, to death, e.g. cause a kind of stroke. In fact, it is precisely the lesion that has made me struggling from the beginning and that has simply intuitively never felt harmless to me. I think she is also responsible for my failures and increasing disability. This lesion is one of those that could theoretically regenerate! Well that gives me courage!
The moment the MS stops, the body CAN recover. But he does not do it alone. I will have to train in a very targeted and extremely disciplined way. At the moment I am already looking for a personal trainer or a physiotherapist, who thinks transversely, thinks creatively, is ambitious and makes my goal with his eagerness. I know that stopping the MS is not forever, but indefinitely – I want the indefinite time to be “forever”. I am not looking for exercises that will sustain my vitality, my goal is to release the MS from my life. I do not want to come to terms with this disease, I do not want to compromise with it. And I certainly do not want to align my life with MS. I will fight like a madman and my goal is to win. That’s why I’m here in Moscow. I try to achieve the best possible. And that’s why I’m looking for a trainer or therapist who fights hard with me. This will be the third phase.
But back to phase two 🙂 After signing the contract on Thursday, Friday started directly with the mobilization of the stem cells. I receive a cortisone infusion in the morning. In the evening at 11 pm and at 3 pm at night, they give me a G-CSF (granulocyte colony stimulating factor) injection to stimulate the stem cells to leave the bone marrow and enter the bloodstream. The goal is that they are then fished out of the blood and frozen on Tuesday before the immune system is completely destroyed by chemotherapy.
On Friday, the 22nd of February, my treatment started. I do not notice any side effects. Every now and then it pulls in the bone, but that could also be related to the fact that I lie much in bed …
I embellished my room with your dear lucky charms, handicrafts and blessings … Here are some impressions:
Friday afternoon I had the day off and Alexey asked if he makes a little relaxed sight-seeing tour with my dear mom and me. Alexey is well known to the patients here and is recommended via word of mouth. He knows why the people are here, gets used to the patients, knows that sometimes we are tired without it being obvious – he is just very flexible. So first he picked me up from the hospital and then my mom from the Vega Hotel and we went off to the Moscow traffic jam. But even in a traffic jam Alexey knew so many interesting things to tell; not only typical facts, but also social conditions, which was really interesting.
Our first stop took us to the Space Museum, which I wished for. Anyone who knows me knows that I love the vast, fascinating universe in which we can just live and love in the middle of it and make everything possible, what we want – because after all, we are in the universe! Kling diagonally, but corresponds to the fact. 😉
We were also in the simulator and have met a few missions in space.
Really funny was that in the end I had scored much less points than the seat sat on the nobody 🙂 Fascinating! Or quantum physics? 😉
Then we were in a really nice Ukrainian restaurant for dinner. The food was great! And the ambience was right.
The winter in Moscow is said to be very mild this year … So we only spent a few seconds in Red Square and in front of the Kremlin … Alexey wanted to know if we were cold. I’ll say it like this: Freezing … hm – my face was just in pain right away. I have not had this “freezing” phase here yet. Honestly, it hurts right. 🙂
Then we were in the famous GUM, the oldest shopping mall in the world.
Unfortunately we did not have much time because I had to go back to the clinic. But I have not missed buying Russian vodka – I think that must be! In Germany I would like to initiate this trip after a while – in a Russian way!
Well … it was a wonderful day! We had a lot of fun and Alexey is so open and straightforward, friendly and funny – I really enjoyed this day. He said such medical treatment needs good and positive energy – and he has absolutely communicated that to me through this day. On soft feet and with a wide, satisfied smile, I returned to the clinic. I was greeted warmly and a few minutes later I received my first injection for stem cell mobilization. It starts now ..
Yesterday and today I have paused a lot and let the last few weeks reminisce. It’s just great what’s happening here and under how many good stars it all stands. I feel so happy!
Tomorrow morning my hair will be shaved off. That’s okay, because they will fail after treatment anyway. It is part of the process for me because I want to renew everything. Then I get the central venous ether in the large jug, which pushes me a thick tube into the atrial chamber of the heart. This access allows the fishing of the stem cells. Did I tell you about my needles? I think tomorrow is the cream da la creme of a needle …
In fact, that moment is the one I am most anxious to resolve because of this treatment. Everything else I get a grip on … but this ZVK puts me in fear, which I find it difficult to reach and control. But … the doctor has promised me twice the amount of local anesthesia and the double dose of sedative … I’ll try to brave it.
I send you greetings in the spring … When I come back, everything will live anew and blossom. That’s the right energy to be kissed by life again. I look forward to it! Joy hardly describes it. I want to thank each one of you with a very deep heart that I am allowed to be here, that I am allowed to face my fears that I may fight! Thanks alot!! It’s my big, deep HEART THANK YOU !! For what could you be more thankful than for the chance to fight for your life. And the fight has begun … Tomorrow with the Venecatecaster I face a great fear – while I take your blessings, your good thoughts, your confident, sympathetic looks, your motivational words and sometimes very open conversations, your heartfelt hugs (of it me so many!), yes, all these countless and so valuable encounters I take tomorrow to help in this moment! Breathe in these memories a few times and imagine this moment. Many, many thanks!
It has so incredibly many positive and loving broken into me. I sucked it all up and it accompanies me here in Moscow. HEART YOU!