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not done yet…

Fanny Sura22 May, 2019Leave a comment

May 22, 2019

We had a doctors appointment yesterday afternoon. I didn’t receive any call or message during the day about my result from the blood test on Monday, so I just assumed it was good news. I expected the doctor to tell me my level had gone down to 0 after doing the treatment.
When she came in she seemed to be happy,..and she told me my level was 8. My level was 8 an hour before I got my treatment (although, they don’t wanna count that since it might differ if you get your blood drawn at different locations, so they count my blood test done at Quest last week which was 10). I was disappointed. Only 8? Chemo and it only went down 2.

But, the good news was that I don’t have to do treatment again this week. I have to do a blood test on Tuesday (cause Monday is a holiday) and if the level isn’t below 5 then, I have to do treatment next week again. So now of course we hope for lower than 5.

Once my level is below 5 (preferably 0), I don’t have to go in weekly anymore, yay, but monthly…for 6 months. Six Months!
She suggested that I start with birth control during this time cause I can absolutely not get pregnant. I said no. My body doesn’t like it plus I don’t wanna put shit into my body.

Aaah! I have to be reminded about this failed pregnancy for another 6 months. I gave myself time to deal with feelings and grieve my baby after she died, and honestly I didn’t need that much time, I felt very ok with it all pretty quickly and I wanted to move on. And then we found out the reason and I have now every week been reminded of that I’m not becoming a mother this year. Every time I get that needle in my arm I’m thinking to myself “my baby died”. And now I’m forced to think about it for the rest of this year whether I like to or not.

I have been crying all day today. I just want to be done and move on.

After the Dr appointment we went out to “celebrate” that I didn’t need treatment this week.
Not a full celebration yet, I guess that will be in six months…

In New York City, Partial Molar Pregnancy, Swedish in America

Nervous for nothing?

Fanny Sura20 May, 201920 May, 2019Leave a comment

May 20, 2019

On Thursday I took the train into Manhattan. I arrived at Grand Central and walked over to Dunkin Donuts on 2nd Ave. I have not been at that dunkin since we lived two blocks away from it back in 2013. On the train ride in I felt a little strange, I figured it was that I needed breakfast so I ordered a bagel with cream cheese and a small decaf coffee cause I was afraid that caffeine would make me feel even more strange. I wanted to sit in the Dag Hammarskjold park but there were some Asian thing going on. Yellow t-shirts, Asians all over the place, people speaking in microphones, a Swedish flag in the middle of the crowd (huh?) and a marching band playing. So instead I walked across the street to a tiny park where J and I have had many breakfasts at before. After awhile the park was filled with mini alcohol bottle drinking men and women and the park smelled like “funny smoke”. I now got a headache so I left. The Swedish Consulate was just around the corner, I was 25 minutes early but I didn’t mind. Getting a new passport was quick and easy. Now I have to wait two weeks and then go back in and pick it up.

I mentioned in a previous post that I was nervous for that appointment if I had to do the treatment and I thought about rescheduling. Nervous for the side effects. It kept me awake every night in Paris. What if I throw up on the train, what if I feel like absolute shit and have to take a photo at the consulate looking like crap, what if I get all the side effects there is and I just can’t get myself to Manhattan what would happen to my passport then? What if, what if, what if… And then the nurse at the ER told me that I probably wouldn’t get any side effect at all and I was more calm on Thursday. So I guess I freaked out for nothing. But I have never had chemotherapy before. Just because I’ve never been allergic to any medicines and stuff in the past doesn’t mean I wouldn’t be affected by the chemo.

I felt mostly fine and I ended up having an amazing day to myself in the city. After the appointment, I walked up town, got a latte at a Parisian place (I wasn’t ready to let go of Paris yet I guess) and then walked to Central Park. Eventually I found myself a spot on the grass where I could enjoy my coffee and read my book. After a little while I decided to walk through the park to midtown, buy a make-your-own salad and walk down to Bryant Park. I probably looked like a lunatic on Fifth Avenue when I tried to walk close to the wall of the buildings and hide from the sun. It was soooo hot out and the sun was strong, but after the treatment I can’t really be in the sun (my cells was killed so my skin had no protection) so I didn’t want to take my sweater off and I had forgot my sunscreen. Bryant Park was PACKED! People walking in circles trying to find one chair or a spot to sit on. I decided to walk to Grand Central, take the next train back and eat part of the salad on the train instead. I was home by 2pm.

6:30 am this morning I had another blood test done. Waiting for the results and tomorrow afternoon we have an appointment with our doctor. Hopefully I won’t need another treatment.

The building inspired by a trashcan

In Europe, France, Travel

Louvre

Fanny Sura18 May, 2019Leave a comment

May 18, 2019

The famous pyramids at the Louvre in Paris was designed by architect Ieoh Ming Pei who also designed the Rock & Roll Hall of Fame in Cleveland that my husband and I visited two years ago. I.m Pei died this week at age 102. Both designs are beautiful and I’m glad I have seen both of these in person.

I have always been interested in architecture. If you have followed my blog for a longer time, you may have noticed that I often post pictures of buildings I like. New York is a great place to find many fine treasures. The Upper West Side is very interesting for example.

The Louvre was an interesting museum with some old cool art, but I was mostly interested in the different rooms – the walls and the ceilings – rather than the pieces of sculptures and paintings displayed. Ok, all of it is part of the museum, but I think you understand what I mean. I kinda rushed through rooms with only art displayed (while J also wanted to see the art and took his time there). That’s why the Opera, Palais Garnier, was so much more of my interest (a separate post will come). I love to walk into a room or stand in front of a building and just stare at the details.
The Louvre had some really cool details as well. The art pieces, ya, there was some nice stuff there and it’s definitely worth going to, and if you don’t mind a big crowd you can see the Mona Lisa painting. The line to go in isn’t too bad so unless it’s pouring down, definitely go check it out. And while you are in the line you get a great chance to look at the building and the pyramids, so win win:)

You’d think when they have seen the painting up front they would move, but nope,
people just hung out in front of it which made it impossible for anyone else to see it up close
This is a ceiling painting photographed in a mirror, so much easier to look at it that way than straight up This to me is really cool, it’s the size of a pocket watch. Look at all those details carved out! This was one of my favorites, and it was relatively new.
Large stone painting, 10 meters high, by Anselm Kiefer

In Uncategorized

Happy Birthday Erik Nilsson

Fanny Sura15 May, 201915 May, 2019Leave a comment

Happy Birthday Grandpa

He would have been 90 years old today.

He was just a kid himself when he started what’s today a big organization that helps children all over the world. He was born with hemophilia and spent lots of time in the hospital. He knew there where other kids out there being sick just like him so he started to send them letters and gifts.

He died when my father was 7 years old, I never got to meet him, but he has always been a part of all of us and the organization is still doing wonderful things for so many people in our world ♥

Check out Erikshjalpen for more info on their work
(the website is in Swedish, but there is an option of google translate)

In Partial Molar Pregnancy

Treatment for Gestational Trophoblastic Disease

Fanny Sura15 May, 201915 May, 2019Leave a comment

May 15, 2019

My level went down one number, which is good, but since I have been around the same numbers for several weeks now, my doctor wanted me to do the treatment anyway. I called Jim to come home from work and together we went to the Emergency Room. Apparently they only have this treatment at the ER for some reason.
We got our own room, I was told to put a gown on and then we sat there for an hour just waiting. Eventually I had Jim go out to ask if I could switch clothes and go to the bathroom.
Eventually a doctor came in and checked me and told us that the standard is to do an ultrasound, a chest x-ray (because it can spread both in the uterus and in the lungs) and get the treatment all in this visit. Since I had already done an ultrasound two weeks ago I didn’t have to do that. They took some blood to check the hcg level, put an IV in my arm and then I had to do an x-ray of my chest. Another hour later they came back and told us that they found nothing in my x-ray so that good. The nurse gave me one shot of methotrexate in each thigh and then we were alone again for 45 minutes.
The insurance guy came in, and then a nurse to take my blood pressure and soon the main nurse came back with my HCG result. I was down another two numbers since Monday, yay, that’s good. I signed a paper and was discharged.

My neck pain that I got on Monday was unbearable, but other than that it was pretty easy. It could be much worse. Many women have to go through so many harder things than myself, so I don’t want anyone to feel sorry for me. I don’t feel sorry for me. Yes, it is a scary thing to have to go through and yes I have been worried, but it could be worse. I have read other womens stories after having the same kind of pregnancy, women who had a hcg level up in the thousands and had to go almost a year with blood tests and do several treatments. I started in the low hundreds and I think my doctors expected me to be done a lot quicker. They have seemed surprised that I’m not done yet.
Our doctors and the hospital staff are all amazing and they are keeping a good eye on me. I couldn’t feel more cared for. I am so happy I chose this place (cause I did some research and carefully picked my doctor when I got pregnant instead of just go to the nearest place, it worked out wonderfully).

I was never really worried about having to do the treatment, I was more nervous for the side effects. When my doctor told me about the treatment she basically only used the word chemotherapy and told me that I could throw up, get really dizzy along with some other minor issues for a couple of days after treatment..and this all scared me of course. When I asked the nurse yesterday she said I might be sore and maybe a little swollen around the area I got the shots but other than that I would most likely feel normal afterwards, the side effects is just like any medicine, like it says on the box that it can be side effects but probably not. Puh! Couldn’t they have told me that from the beginning and I would have been more calm about it? Ok, it’s only 9 am the day after now so I don’t know yet how my body will react, but it seems ok.

I have to see my doctor and do another blood test next week. She’s hoping that this treatment would take me all the way down to 0 and I would be done next week, but the nurse yesterday said that since I have been around the same level going up and down, she thinks I might have to do another treatment, but I won’t know until after next blood test.