just power through, it could be worse

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June 7, 2019

I don’t really know what to write today.
Yesterday I decided to go hang out with Daniela, who is back from her trip, for a few hours. She made us lunch (oh, she is just too sweet) and in the middle of eating my doctor called. I kinda just expected her to tell me good news that I was below 5. 
“Your level is 9 now” (= 2 up from before my treatment)
I asked her what that means and what will happen now. They don’t wanna send me to get treated with methotrexate over and over (the shots I have got twice now), so she scheduled me at a place here in Stamford to meet with an oncologist on Wednesday next week. I called that place this morning to confirm my appointment and I asked if there was any information in my file on how long this appointment would be and what I’m expected to get done. She couldn’t give much info, so I have to just wait til next week to find out. But my guess is that I have to get a different kind of chemotherapy that can attack my stubborn cells. But I don’t actually know, so…

I’m so happy that I was with D when the phone call came. She allowed me to have a minute to process the info and then let me talk if I needed to. Since I don’t know what it is that I need to process, it just felt good to be there with her (I later helped her put some frames up on the walls in their guest room) and it took the attention away from it all a bit. 
When J came to pick me up after work, he ordered us pizza and we sat on our terrace all night. His company through all this is also extremely valuable to me.

I feel ok. Since I don’t know how bad this is, or if it’s really bad at all, I have to just try to not think about it. There’s nothing I can do about it right now anyway. But I will be fine, I know I will. 

Video: Romantic Trip to | Paris Vlog

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June 5, 2019

Here’s our Paris video. I have tried and tried to shorten it down, hahaha, but it was tough:) I hope you like it, and if you do, please give it a thumbs up over at YouTube and don’t forget to subscribe. 
Have an awesome day! 

a day in NYC and first weekend in June

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June 3, 2019

Hello! How are you lovelies? I am tip top. Woke up a bit later than I wanted today, but whatever. I have many things I want to do today, very motivated:) Most of it is by the computer which is boring for my little fluffis, but I will take breaks and take him for walks. It is a bit hot for him to go outside in the middle of the day though so I have to keep it short. His fluff is getting long now and our two regular groomers are fully booked so I’m not sure what to do, probably have to find someone new. 

Anyhow… On Friday I had a full day to myself again. Jim took Thor to work at 7:20 am and I enjoyed my breakfast in front of youtube for a bit. I had really planned out my morning well, no stress at all, I felt very calm. Breakfast, cleaning up a bit in the apartment, getting ready and then I went for a walk to the train station. On my way there the maintenance guy called and asked if he could enter our apartment (our bedroom curtain was broke again) and I assured him that Thor would not be there and bother him, hahah. 
I came to Manhattan a bit early so I walked over to Tudor City Parks. I have not been there since I performed with The Equus Projects there 2013. Then I walked to the Swedish Consulate for my 11:30 appointment. I was there for one minute and then I took the subway down to our old neighborhood, Financial District/Battery Park City. Oh my, it looks quite different. I bought coffee and tuna bagel at the market across from our old apartment and I didn’t recognize the place inside, a lot of improvements. With my lunch I walked over to the park where Midsummer celebration is every year. I sat on the grass on a blanket that I had with me for a few hours. Read my book, ate lunch and watched people walking by. I sat in the shade of course since I can’t be in the sun after chemo. It was a pretty hot day and I was wearing long pants, a thinner sweater and eventually a hat along with sunscreen to protect myself.  I was a sweaty betty for sure.
I walked up along the Hudson River and then into Soho and took the subway up to Grand Central and I arrived just in time for the last off-peak train to Stamford (peak trains costs more and are usually packed). My day was perfect. My legs were sore and I felt a bit tired, but I’m glad that I decided to stay in the city instead of going back home after picking up my passport.

My favorite place in the city is gone :'( Right after we moved they started to build a new bridge over the highway. This is outside of the vet and the grocery store next to our apartment.
The whole neighborhood including the dog parks is a shit show right now, I’m glad we moved before

First time that my passport photo didn’t look too terrible 🙂

On Saturday we had plans with D and G but late Friday night they booked a last minute “babymoon” trip to Belize. I needed to rest my legs that was still sore from the shots and from all the walking I did on Manhattan, so I didn’t mind not having plans anymore. We had a relaxed morning and in the afternoon we made burgers on the rooftop and then took Thor for a longer walk to the park close by. At night I was watching something on my tablet while Jim watched Svengoolie on TV – I was not at all interested in the movie they showed, Billy the kid versus Dracula from 1966, even the name sounds terrible.

On Sunday I got up two hours before my boys and did stuff on my computer. We had decided to go see the Avengers at the movie theater in the afternoon since the weather was kinda crappy in the morning, but when it was time to leave it was sunny outside and we decided to skip the 3 hour long movie and go have lunch at a bar instead. And then we had a pretty relaxed afternoon. This weekend we started to watch the new tv-show Chernobyl that everyone is talking about. Not sure if I like it or not. Have you seen it?

Not a too exciting weekend, but that’s ok. I couldn’t enjoy the sun anyway and I felt that I needed to stay calm and relaxed after treatment. Not all weekends need to involve some super extreme stuff, hanging out with hubby and puppy is enough:)

Video: BLOMSTERTID | Dance Improvisation | NYC

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June 1, 2019

// Sound on //

I’m going out of my own comfort zone with this video. I am singing 😳 It’s a Swedish psalm that kids sing in school on the last day before summer break.
I was in New York City yesterday to pick up my new passport and in the afternoon I found a nice spot by Hudson River and I decided to dance a little:)

Den blomstertid nu kommer
Med lust och fägring stor
Nu nalkas ljuva sommar
Då gräs och gröda gror
Med blid och lidlig värma
Till allt som varit dött
Sig solens strålar närma
Och allt blir åter fött

another round of chemo

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May 30, 2019

I waited all day yesterday and eventually I called the doctors office. 10 minutes later one of my doctors called me back and told me that my level only went down one number, I am now at 7. So,…I needed treatment again.
Jim came home and we drove to the Emergency Room. Lots of people in the waiting room this time, but I think that because my doctor had called them beforehand I could come in quicker, we didn’t have to wait too long and came in before others. We got a room again, this time with a TV that was on. It was the news though and I don’t like to watch the news, it is so depressing, but now I didn’t really have a choice but to watch it.
An hour after just sitting there a doctor came, we gave him the info on why I was there and he said he would go call my doctor. 45 minutes later he came back and said that he had ordered the treatment 30 minutes ago and once I get it I only have to stay for 10-15 minutes and then I could go home. 
They never gave me any gown to change into, no IV in my arm this time and we just had to sit in that room with the door open and we could see all the doctors, sick patients and cops walking by. On TV they kept warning about the tornadoes that was supposedly hitting New Jersey, New York and Connecticut.

When we had been there for 2 hours 20 minutes, a male nurse came in with a bag of yellow warning signs on it. He apologized that we had to wait but explained that he wanted himself or another male nurse to give me the treatment instead of a woman. Apparently it’s bad for women to handle this since it can be harmful to someone who wants to get pregnant or is pregnant, which makes sense. It was a woman giving me the shots the last time though, maybe they didn’t have a guy available then…
I had to pull down my jeans and he hit me in the right thigh with the first shot. When he got it out it was bleeding quite a lot so he must have hit something. And then he jammed the second shot into my left thigh. No blood on that one. And then he left. 
It was actually hurting a bit this time. Last time I didn’t really feel much but now I could feel all leg muscles hurt from my hips all the way down to my feet. It might have been because I was sitting with my legs dangling off the bed this time (last time I was fully on the bed with my legs relaxed straight) plus that he actually really hit me with the shots especially the last bit when he was gonna get it out of my thigh. I tried to massage the thighs for the 10 minutes we had to wait for a nurse to come and discharge me. We spent 3 hours at the ER in total this time. 

I felt a little pain when walking after our visit and I was a little nauseous so I ate something and then relaxed on the couch when we came home. When I got up to brush my teeth and stuff to go to bed my thighs felt like balloons (but didn’t look like it) and I could feel a little bit more pain in my legs. I could not put full weight on my left leg when standing up without feeling discomfort and I woke up a few times at night when I moved around especially when rolling over to my left side. Slow walking today as well and now after sitting by my desk for a few hours I’m quite uncomfortable, I may have to lie down soon. But other than my legs being sore, I feel fine. Just tired and a little mushy. Jim is working from home today which is nice, he can help out and take Thor for walks. 

It sucks that I had to do this again, it sucks that my level hasn’t gone down much and it sucks that if it continues this slow there’s a chance that I have to get treatment again, but you know what…it could be worse. That’s what I keep telling myself. It. Could. Be. Worse. 
I am not dying, I have a loving husband, a snuggly puppy and people who cares for me. I am fine.