2014.02.28
Slept on and off from 2 am to 6 am. Hard to get a comfortable position with the neck muscles having been cut through. Who knew you clenched those muscles when sitting up?
Those waken hours between 2 and 6 were used wisely. I chatted with friends and family in the USA who were still awake. Writing instead of talking is a interesting form of communication because you actually have to think before you write. It puts the conversation on a entirely different level. These conversations give me energy and comfort. LOVED.
Eric slept between us last night as he wants to be close to us. His breathing is so melodic. Eric and I got up and made a nice easy breakfast in bed for Peter. He was happy. The other two kids slept on until late morning and missed the fun we had us three, just laughing and talking. It was cozy.
I took the last painkillers and stayed in bed because I could. It felt great just laying there. It was finally time to get up and face the new issue of the bandage and stitches can't get wet. So a shower is first from the neck down and then hair washing in the sink. A pain in the butt because it hurts to lean over the sink while bending my neck.
Peter helped during the hair washing process and my phone rang as I was almost done rinsing but the person had hung up by then. It was a message from the doctor that started today's roller-coaster ride. The results from yesterday's biopsy showed that it is pressing against many major arteries and could lead to the risk of a blood clot forming. (oh shit) So to be on the safe side he had called in a prescription for a blood thinning medicine that is to be injected into my stomach every morning until treatment starts. (oh shit)
My anxiety level rises and we leave for the Pharmacy. We get the medicine and decide to ask the local doctors office if a nurse can inject it for us. Peter is really scared of needles and who likes to put a needle into themselves if they don't have to?
So let me back up a little bit to some important events that happened this week. On Wednesday I received an appointment letter from Taby Centrum Doctors for an appointment next Friday May 7th to have a look at my thyroid. (one day after chemo starts) They had received a referral from the Emergency Room that I visited on February 15th for this lump/clump on my neck. So, I ask myself, what the hell did that emergency room doctor write on the referral and why did it take them 3 weeks to get me a time in the office? I knew I needed the copy of the referral to see how far off the truth she was.
I spoke with a nurse at the doctor's office and said I needed the copy of the referral right now. It took a bit of time but once it was in my hand I said to her that I needed to cancel the appointment next Friday because it is not my thyroid it is cancer of the lymph nodes and the emergency room doctor was clueless. She was speechless.
Now I needed to ask for help with the shot for today and all of sudden there was a nurse available to help me. Luckily my sanity was saved during this when my phone pinged with a text from a 12 year old boy that has been many many times to Creative Brick Zone for camp. He wrote exactly the words I needed to hear at that moment. It made me feel comforted when the stress and worry of a possible blood clot was weighing heavily on my mind. GRATEFUL
The nurse showed us how to do it. Not so painful at all but still not something I wanted to do. Now we were all stressed and needed to do some food shopping. Never the best combination. (note to self: find a way to even out the roller-coaster ride)
Food purchased and mission almost accomplished. The taby doctor would not give out the journal of what the doctor wrote about the visit, I needed to go to Danderyds Hospital to take care of that. I arrived at the Emergency room window and ask politely but firmly for the journal copy of my (useless) visit two weeks ago. They saw how serious I was and said I needed to fill in a form or I should have asked the doctor when I was here. (Yea right, it was the middle of the night, who thinks of those things?) I filled in the form and when I get it I have to report it to the authorities. Most people would have done as she said and waited for the Taby doctors to book an appointment with terrible consequences. I am reporting her to spare other people from meeting this clueless doctor.
I am grateful that I took my healthcare into my own hands and went to some good doctors that Monday two days after the emergency room catastrophe. Because of my own instinct and that I never give up I have saved my ass and now I am going to kick some cancer's ass!
Things are not normal at home if Peter opens a bottle of red wine to drink even though I told him I wasn't having any!!!!!!!!!!! Happy Birthday Peter!!!!!! Our crazy reality for the next 6 months is just starting, welcome onboard the rollercoaster ride of our lives.
All about my battle against aggressive non-hodgkins lymphoma and living after with the remission.
Friday, February 28, 2014
Thursday, February 27, 2014
BIOSPY successfully completed
2014.02.27
Banging on the front door at 1 am woke me up. It was Peter announcing his arrival from London. I was not in the mood for any small talk, I let him in, said hello and got back into bed. A few more hours of cherished sleep.
My iphone is my lifeline. It has easy access to FB where some of my friends send me messages, others who send text messages and then the others who call my direct line. It also has my music with Teresa's Kick Ass playlist, my favorite movies and some games in that rare instance I get bored. It has the Internet in case I need to google something. It is my alarm clock and my camera. It keeps me connected. It fits in my pocket. I am thankful for my iphone.
So, as usual I reach for my iphone to turn off the alarm and Nikki F. sees I am online. She is my pep talker and cheerleader texting all those things I need to hear and makes me laugh. Grazzi habib. Grateful!!!
The clock today is ticking because there are no liquids allowed for me after 7:30 am. A quick shower and thinking why am I even washing my hair when it will be cut in a few days into a cool easy style a la PINK? Hurry to the kitchen for some of that now favorite apple juice for some energy. It goes down easy. Better mix a glass of water in between the next big glass of apple juice again. I have this energy flowing through me and know that a quick paced walk with my lifeline and headphones will do the trick.
Coat on, shoes on, headphones in and put on all the fast paced songs for 20 minutes of walking. "I can do this! I can do this! It's not so bad" ran through my head intermingled with the words from the songs like 'Dance Your Tears Away' Felt good!!!!! It was a bit of a pain though when I came back and realized I couldn't quench my thirst. Oh well.....
Winter break week in Stockholm means hardly any cars out on the road so we were at the hospital way too early! Typical, but I really wanted to get it over and done with even though I had flashes of those thoughts like what happens if the anesthesiologist makes a mistake and I don't wake up. It would be worse for those left behind. I have a lot to live for and luckily those thoughts vanished as quickly as they flashed through my head.
Checked in, got a bed, a "stylish" nightgown (as Peter noted) and a needle or a line put into my arm. Did not feel a thing with that needle. Best nurse ever. All ready-------for a two and a half hour wait-------before they took me in at 12:30.
Down in the pre-op I met the doctor and the anesthesiologist and they explained the procedures to me. I asked the doctor if he could take a big piece out so it would be easier to get rid of with chemo. He said "that is not how to cure this cancer. It must be treated with chemo and besides the tumor has grown very close to the carotid artery and behind muscles in your neck, so that would make it too risky of a procedure."
Then I met the nurses who were going to prep me for the operation and I took the opportunity to ask them a question. "When the doctor has me open and has exposed the cancer can someone in there take a picture so I can see what this cancer looks like? Do you want to borrow my iphone?" It is so I could see what I was fighting. What would cancer look like? They said they would ask when they saw the doctor.
The operating room had a bunch of people who all introduced themselves to me. I asked if there was going to be a test on the introductions when I was done. Ha ha, they said maybe. They were all nice and went about their business. The anesthesiologist came in and then I breathed in and took a "nap " for about an hour.
Next memory is jolting upright in bed, hearing my name and starting to cough so the stitches bled a little through the bandage. WATER, WATER, WATER. They only gave me a little. The tube had irritated my throat, but within a half hour I had had a few small glasses of water and an extra shot of morphine. Feeling good!!!!! As soon as I could I put my headphones in my ear for some kick ass music. I did a quick check on FB and my youngest brother Dan, wanted to know how I was. I'm in post op and OK. He answered "put down the phone you are in a hospital bed".
The doctor came in and gave me a summary. The lymph nodes are 10 times bigger then they should be and resemble a cluster of ripe grapes but when he removed the piece it was like the inside of a cinnamon bun in consistency. He said a picture is not what I am fighting so he didn't take one. (It would have been cool to see I think, but alas he is right)
Later I was moved to a regular floor for follow-up care. Started with vanilla ice cream and then I had some sandwiches. Tired and my neck is starting to hurt. We realized we would be getting home later than expected so a quick call to Anna, neighbor and friend resulted in three pizzas delivered to the boys for dinner. Thanks Anna!
The nurse has given me some morphine pills for tonight and tomorrow. By 7:00 pm Peter was (hungry) and ready to go home after so many hours in the hospital and asked me if I was ready go. Of course, honey, let's go!
As we pulled into our driveway and get out of the car, we are greeted by our neighbors Linda och Bosse from across the street who were wondering how everything went and worrying why it took us so long. It felt good to laugh and talk about the day in the fresh cold evening air.
It feels OK and more confident now in my head as compared to just a week ago when I got the diagnosis. (which was a little like WTF) I know the low times will come but I need to hold onto this good feeling as long as I can. It is made easier by all my friends who care. LOVED.
LAUGH. LAUGH. LAUGH.
Tomorrow is Peter's birthday. Eric is making him breakfast in bed. Hope I get some too.
Banging on the front door at 1 am woke me up. It was Peter announcing his arrival from London. I was not in the mood for any small talk, I let him in, said hello and got back into bed. A few more hours of cherished sleep.
My iphone is my lifeline. It has easy access to FB where some of my friends send me messages, others who send text messages and then the others who call my direct line. It also has my music with Teresa's Kick Ass playlist, my favorite movies and some games in that rare instance I get bored. It has the Internet in case I need to google something. It is my alarm clock and my camera. It keeps me connected. It fits in my pocket. I am thankful for my iphone.
So, as usual I reach for my iphone to turn off the alarm and Nikki F. sees I am online. She is my pep talker and cheerleader texting all those things I need to hear and makes me laugh. Grazzi habib. Grateful!!!
The clock today is ticking because there are no liquids allowed for me after 7:30 am. A quick shower and thinking why am I even washing my hair when it will be cut in a few days into a cool easy style a la PINK? Hurry to the kitchen for some of that now favorite apple juice for some energy. It goes down easy. Better mix a glass of water in between the next big glass of apple juice again. I have this energy flowing through me and know that a quick paced walk with my lifeline and headphones will do the trick.
Coat on, shoes on, headphones in and put on all the fast paced songs for 20 minutes of walking. "I can do this! I can do this! It's not so bad" ran through my head intermingled with the words from the songs like 'Dance Your Tears Away' Felt good!!!!! It was a bit of a pain though when I came back and realized I couldn't quench my thirst. Oh well.....
Winter break week in Stockholm means hardly any cars out on the road so we were at the hospital way too early! Typical, but I really wanted to get it over and done with even though I had flashes of those thoughts like what happens if the anesthesiologist makes a mistake and I don't wake up. It would be worse for those left behind. I have a lot to live for and luckily those thoughts vanished as quickly as they flashed through my head.
Checked in, got a bed, a "stylish" nightgown (as Peter noted) and a needle or a line put into my arm. Did not feel a thing with that needle. Best nurse ever. All ready-------for a two and a half hour wait-------before they took me in at 12:30.
Peter passing the time in the morning. |
Down in the pre-op I met the doctor and the anesthesiologist and they explained the procedures to me. I asked the doctor if he could take a big piece out so it would be easier to get rid of with chemo. He said "that is not how to cure this cancer. It must be treated with chemo and besides the tumor has grown very close to the carotid artery and behind muscles in your neck, so that would make it too risky of a procedure."
Then I met the nurses who were going to prep me for the operation and I took the opportunity to ask them a question. "When the doctor has me open and has exposed the cancer can someone in there take a picture so I can see what this cancer looks like? Do you want to borrow my iphone?" It is so I could see what I was fighting. What would cancer look like? They said they would ask when they saw the doctor.
The operating room had a bunch of people who all introduced themselves to me. I asked if there was going to be a test on the introductions when I was done. Ha ha, they said maybe. They were all nice and went about their business. The anesthesiologist came in and then I breathed in and took a "nap " for about an hour.
Next memory is jolting upright in bed, hearing my name and starting to cough so the stitches bled a little through the bandage. WATER, WATER, WATER. They only gave me a little. The tube had irritated my throat, but within a half hour I had had a few small glasses of water and an extra shot of morphine. Feeling good!!!!! As soon as I could I put my headphones in my ear for some kick ass music. I did a quick check on FB and my youngest brother Dan, wanted to know how I was. I'm in post op and OK. He answered "put down the phone you are in a hospital bed".
The doctor came in and gave me a summary. The lymph nodes are 10 times bigger then they should be and resemble a cluster of ripe grapes but when he removed the piece it was like the inside of a cinnamon bun in consistency. He said a picture is not what I am fighting so he didn't take one. (It would have been cool to see I think, but alas he is right)
Later I was moved to a regular floor for follow-up care. Started with vanilla ice cream and then I had some sandwiches. Tired and my neck is starting to hurt. We realized we would be getting home later than expected so a quick call to Anna, neighbor and friend resulted in three pizzas delivered to the boys for dinner. Thanks Anna!
Peter passing the time in post-op. |
The nurse has given me some morphine pills for tonight and tomorrow. By 7:00 pm Peter was (hungry) and ready to go home after so many hours in the hospital and asked me if I was ready go. Of course, honey, let's go!
As we pulled into our driveway and get out of the car, we are greeted by our neighbors Linda och Bosse from across the street who were wondering how everything went and worrying why it took us so long. It felt good to laugh and talk about the day in the fresh cold evening air.
It feels OK and more confident now in my head as compared to just a week ago when I got the diagnosis. (which was a little like WTF) I know the low times will come but I need to hold onto this good feeling as long as I can. It is made easier by all my friends who care. LOVED.
LAUGH. LAUGH. LAUGH.
Tomorrow is Peter's birthday. Eric is making him breakfast in bed. Hope I get some too.
Wednesday, February 26, 2014
Apple juice anyone?
2014.02.26
Too much apple juice? After yesterdays CT scan I was told to drink lots of liquids for the next 2 days to get all that dye out of my body or it could be dangerous. (as if I am not in any danger right now anyway....) So, there has been a lot of apple juice consumed in the past 24 hours. I never really drank any juice before it was mostly coca-cola. Now in the last week I have gone cold-turkey on sugar, coca-cola, coffee any other type of snacking. The new me or the right me is starting to form. (???)
Lazy morning in bed chatting with those friends that are really good at pestering me. Eric sleeps on Peter's side of the bed when he is in London. It was so sweet to awake before him and listen to his soft breathing next to me. Ten minutes later he opens his eyes and he is wide awake (don't know how he does that) and gives me a good morning hug. One of the best ways to start the morning!!!!!!!!
There was a bit of soreness in the area where Olga attacked me yesterday but I managed to shower and change the bandage with Kevin's help.
Each terrible or scary thing I have to go through is one step closer to the end of this ordeal.
A walk with Eric outside for 20 minutes was great and just what I needed to get back a bit of energy. I had the song Brave on repeat for the whole walk. Eric thought I should change the song.......but was singing along by the end.
Still had energy when I got home, so I vacuumed the house, thinking I won't have the strength to do this next week and that someone else will do this.
Then lucky me got a ride and company to the afternoon ENT doctor visit by Maria. Thanks for being there, Maria!!!!! The ENT doctor was nice and asked to check my nostrils before she puts a 2 foot wire camera through my nose into my throat. Easy compared to Olga! The operation for tomorrow morning was scheduled and I asked them to knock me out for it so I don't feel him cutting me up. The biopsy is to take out a 1 cm piece of the tumor on my neck and throat so they can analyze it and make sure they are using the appropriate chemo treatment. I will have a nice battle wound on my neck to remember this fun experience.
In Sweden after you pay a certain amount (1100 SEK or $170 USD) in doctor's visits then it is free health care from the date of the first doctor visit and 1 year forward. So, that means after my first week of visiting specialists, now all my health care is free until February 2014. So, I will battle cancer and be cured and it only cost me $170 USD. That is a good thing along with getting the care at the premier hospital in Sweden, I feel confident.
Yesterday I got a bunch of brochures and information from the Hematology nurse and it was first today that I looked them over. I received information about where to get a wig fitted. (There is a an amount up to about 5000 SEK that is paid for by the health care rules.) Scary to contemplate that my hair will be gone very very soon. I find myself constantly running my fingers through my hair, which I had never done before. On the fence about the wig, I will have to wait and see. It is an opportunity to change color and style if I felt like it. I also got a travel card for taxi back and forth from home to hospital for the treatments. I pay a reduced fee for taxis but don't know if I will use that benefit as sometimes the taxis are late or don't come and that is too much stress to take.
I feel like I am in a zombie mode and I am going through the motions and taking the tests but don't really have a good perspective. Luckily Peter is on his way home tonight and will be here for the operation tomorrow. That feels good!!!!!!
No eating after midnight for me tonight. Operation tomorrow. (how the heck can I be happy about that?) I double checked with the ENT doctor that Olga would not be in on this operation..:-)
Cancer sucks and this feels like the calm before the storm right now! I know once the storm hits I am going to be seasick and holding on for dear life.........
Too much apple juice? After yesterdays CT scan I was told to drink lots of liquids for the next 2 days to get all that dye out of my body or it could be dangerous. (as if I am not in any danger right now anyway....) So, there has been a lot of apple juice consumed in the past 24 hours. I never really drank any juice before it was mostly coca-cola. Now in the last week I have gone cold-turkey on sugar, coca-cola, coffee any other type of snacking. The new me or the right me is starting to form. (???)
Lazy morning in bed chatting with those friends that are really good at pestering me. Eric sleeps on Peter's side of the bed when he is in London. It was so sweet to awake before him and listen to his soft breathing next to me. Ten minutes later he opens his eyes and he is wide awake (don't know how he does that) and gives me a good morning hug. One of the best ways to start the morning!!!!!!!!
There was a bit of soreness in the area where Olga attacked me yesterday but I managed to shower and change the bandage with Kevin's help.
Each terrible or scary thing I have to go through is one step closer to the end of this ordeal.
A walk with Eric outside for 20 minutes was great and just what I needed to get back a bit of energy. I had the song Brave on repeat for the whole walk. Eric thought I should change the song.......but was singing along by the end.
Still had energy when I got home, so I vacuumed the house, thinking I won't have the strength to do this next week and that someone else will do this.
Then lucky me got a ride and company to the afternoon ENT doctor visit by Maria. Thanks for being there, Maria!!!!! The ENT doctor was nice and asked to check my nostrils before she puts a 2 foot wire camera through my nose into my throat. Easy compared to Olga! The operation for tomorrow morning was scheduled and I asked them to knock me out for it so I don't feel him cutting me up. The biopsy is to take out a 1 cm piece of the tumor on my neck and throat so they can analyze it and make sure they are using the appropriate chemo treatment. I will have a nice battle wound on my neck to remember this fun experience.
In Sweden after you pay a certain amount (1100 SEK or $170 USD) in doctor's visits then it is free health care from the date of the first doctor visit and 1 year forward. So, that means after my first week of visiting specialists, now all my health care is free until February 2014. So, I will battle cancer and be cured and it only cost me $170 USD. That is a good thing along with getting the care at the premier hospital in Sweden, I feel confident.
Yesterday I got a bunch of brochures and information from the Hematology nurse and it was first today that I looked them over. I received information about where to get a wig fitted. (There is a an amount up to about 5000 SEK that is paid for by the health care rules.) Scary to contemplate that my hair will be gone very very soon. I find myself constantly running my fingers through my hair, which I had never done before. On the fence about the wig, I will have to wait and see. It is an opportunity to change color and style if I felt like it. I also got a travel card for taxi back and forth from home to hospital for the treatments. I pay a reduced fee for taxis but don't know if I will use that benefit as sometimes the taxis are late or don't come and that is too much stress to take.
I feel like I am in a zombie mode and I am going through the motions and taking the tests but don't really have a good perspective. Luckily Peter is on his way home tonight and will be here for the operation tomorrow. That feels good!!!!!!
No eating after midnight for me tonight. Operation tomorrow. (how the heck can I be happy about that?) I double checked with the ENT doctor that Olga would not be in on this operation..:-)
Cancer sucks and this feels like the calm before the storm right now! I know once the storm hits I am going to be seasick and holding on for dear life.........
Tuesday, February 25, 2014
Hardest Bones ever.......
2014.02.25
I was so looking forward to today to get some answers and get going on getting this cancer out of me!
Early to rise in anticipation of all these really fun (not) tests and answers from the doctors.
All the wonderful -thinking of you- messages I received this morning were heartwarming and gave me the energy and focus to get it done today! LOVE.
Dale, a fantastic person and friend volunteered to be with me today! What a hero! She drove and we found the right department of Hematology and met the doctor. No info on the stage or level because all the tests are not done yet. It looks like based on what they know that it will be R-CHOP treatment to start with. They will have a doctor conference next Tuesday and discuss the options and then I get to meet the doctor on the 5th of March to know the exact level and extent and then Chemo starts on the 6th of March at 9 am. Yippee!!!! .......
Of course this plan is all contingent on the tumor not growing so fast that it makes breathing more difficult or hard to swallow. Then I get to start chemo as soon as I check into the emergency room.
The most fun part of the day was definitely the bone marrow biopsy! I won (if there was a contest) hardest bones they had ever seen. Shall I paint the picture?
Come into the room, meet the nurse and doctor to perform this procedure. Lay on my stomach, put my headphones in one ear so I can still hear the doctor and put on the song Brave. Oh yea, they took my eyeglasses so now I can not hear that well.
I told Dale not to watch but she couldn't resist and now she can't get this experience out of her mind. OK, so first it is local anesthesia on the left side -not so bad. Then it is the pressure not so bad as she put the real needle in to get out the bone marrow. She can't get past the bone. She gives it another try. Then calls in the heavy artillery - another doctor who bends over and puts her face next to mine and scares me and says "I am Olga and I will give it a try."
Well, boy did she. She pushed as hard as she could, I almost lost my breath. This she tried at least three times on the left side. Not enough success. OK- local anesthesia on the right side. Repeat process of pushing like there is no tomorrow. Dale is watching the whole thing and squeezing my arm tighter as she sees Olga doing her thing. She was definitely a Russian Bear and I was mauled. She only got about half the fluid she needed but the nurse said it should be enough. Keep your fingers crossed that it was.
Then it was 3 hours of fasting before the cat scan for the whole body. That was easy compared to my meeting with Olga!
Thanks all of you that keep in touch with me. It was reassuring during the bone marrow biopsy when my phone pinged in my ear to notify me of an incoming text. LOVE.
Home to a beautiful bouquet of flowers from work. I really miss my work mates and all the kids that I had each week for LEGO class. LOVE.
Time for some more painkillers and to take a rest. Luckily the kids have their computers and something to occupy themselves while I sleep!
Tomorrow and Thursday are more tests and they should be bearable as long as I do not have to meet Olga again.
LOVED. PAIN. ONE STEP CLOSER
I was so looking forward to today to get some answers and get going on getting this cancer out of me!
Early to rise in anticipation of all these really fun (not) tests and answers from the doctors.
All the wonderful -thinking of you- messages I received this morning were heartwarming and gave me the energy and focus to get it done today! LOVE.
Of course this plan is all contingent on the tumor not growing so fast that it makes breathing more difficult or hard to swallow. Then I get to start chemo as soon as I check into the emergency room.
The most fun part of the day was definitely the bone marrow biopsy! I won (if there was a contest) hardest bones they had ever seen. Shall I paint the picture?
Come into the room, meet the nurse and doctor to perform this procedure. Lay on my stomach, put my headphones in one ear so I can still hear the doctor and put on the song Brave. Oh yea, they took my eyeglasses so now I can not hear that well.
I told Dale not to watch but she couldn't resist and now she can't get this experience out of her mind. OK, so first it is local anesthesia on the left side -not so bad. Then it is the pressure not so bad as she put the real needle in to get out the bone marrow. She can't get past the bone. She gives it another try. Then calls in the heavy artillery - another doctor who bends over and puts her face next to mine and scares me and says "I am Olga and I will give it a try."
Well, boy did she. She pushed as hard as she could, I almost lost my breath. This she tried at least three times on the left side. Not enough success. OK- local anesthesia on the right side. Repeat process of pushing like there is no tomorrow. Dale is watching the whole thing and squeezing my arm tighter as she sees Olga doing her thing. She was definitely a Russian Bear and I was mauled. She only got about half the fluid she needed but the nurse said it should be enough. Keep your fingers crossed that it was.
Unfortunately we did not get to meet him. It would have been music to my ears! |
Dale and Me |
Then it was 3 hours of fasting before the cat scan for the whole body. That was easy compared to my meeting with Olga!
Thanks all of you that keep in touch with me. It was reassuring during the bone marrow biopsy when my phone pinged in my ear to notify me of an incoming text. LOVE.
Home to a beautiful bouquet of flowers from work. I really miss my work mates and all the kids that I had each week for LEGO class. LOVE.
Time for some more painkillers and to take a rest. Luckily the kids have their computers and something to occupy themselves while I sleep!
Tomorrow and Thursday are more tests and they should be bearable as long as I do not have to meet Olga again.
LOVED. PAIN. ONE STEP CLOSER
Monday, February 24, 2014
BRAVE Monday
2014.02.24
Awoke early to messages from friends on the other side of the Atlantic. A good way to start the day. Mary sent a suggested fight song called BRAVE by Sara Bareilles. A fantastic song that got me crying to start the day with happy tears and a release of tension. It really was spot on. Thanks Mary, it is now on my most played music playlist.
Not long after listening to the song it was Carla, (friends since high school) and we got to talk. Thank goodness for the 9 hours time difference. Fantastic and meaningful especially when she said she would come here and help! (Although not with the cooking that is not her forte....) Thanks Carla, I am grateful.
Took a walk before meeting Sarah för lunch at Vapianos. The company was great and the food was too right up until the point I found a bug in my rucola salad. Will not be ordering that again anytime soon!
Some of my friends are awesome at "pestering me" with their presence either online or in person and I really appreciate it. You check in on me, ask the right questions, put it into perspective. You know who you are.....
I am the worst person in the world to ask others for help. I can do everything myself, right? Well, I am starting to realize that I have to put all my focus on me so I can beat this cancer's ass and I also have to let other people help me. That is heavy for me.
I know how many people are willing to help and it makes me happy and overwhelmed with the loving support of all those around me. This will help me get through it all. Right?
Now it is time to prepare my questions for the first meeting with the lymphoma doctors tomorrow. I am nervous for the tests that will be done but now I am ready for more information and a plan forward. A good day today as now I am ready as I will ever be for tomorrow............
I am a FIGHTER. I am BRAVE. I will ask for HELP. I am LOVED.
- FRIENDS are a blessing and I am truly blessed!
- BE BRAVE
- ASK FOR HELP
Awoke early to messages from friends on the other side of the Atlantic. A good way to start the day. Mary sent a suggested fight song called BRAVE by Sara Bareilles. A fantastic song that got me crying to start the day with happy tears and a release of tension. It really was spot on. Thanks Mary, it is now on my most played music playlist.
Not long after listening to the song it was Carla, (friends since high school) and we got to talk. Thank goodness for the 9 hours time difference. Fantastic and meaningful especially when she said she would come here and help! (Although not with the cooking that is not her forte....) Thanks Carla, I am grateful.
Took a walk before meeting Sarah för lunch at Vapianos. The company was great and the food was too right up until the point I found a bug in my rucola salad. Will not be ordering that again anytime soon!
Some of my friends are awesome at "pestering me" with their presence either online or in person and I really appreciate it. You check in on me, ask the right questions, put it into perspective. You know who you are.....
I am the worst person in the world to ask others for help. I can do everything myself, right? Well, I am starting to realize that I have to put all my focus on me so I can beat this cancer's ass and I also have to let other people help me. That is heavy for me.
I know how many people are willing to help and it makes me happy and overwhelmed with the loving support of all those around me. This will help me get through it all. Right?
Now it is time to prepare my questions for the first meeting with the lymphoma doctors tomorrow. I am nervous for the tests that will be done but now I am ready for more information and a plan forward. A good day today as now I am ready as I will ever be for tomorrow............
I am a FIGHTER. I am BRAVE. I will ask for HELP. I am LOVED.
Sunday, February 23, 2014
Sunday and it's sunny!
2014.02.23
Awoke early as Peter's flight to London left at 8 am. Slept OK, but I feel more and more pressure in my neck and the coughing comes and goes. It was hard for Peter to go back to London and work. Our flight to Gran Canaries left at 6 am without us on it. I watched both that flight and Peter's flight on my Flightracker App. I thought about how it should have been but now how it will be instead this week!
Most of the Stockholm friends have left town for winter break skiing. My other friends are all in different time zones and that is great for having conversations on Facebook with them when they see I am on line. Middle of the night for them, morning for me! Those caring words mean a lot to me.
I was in no hurry to get out of bed today. But then the sun was out and I knew I needed to get moving.
I was thinking about how much I like my hair now and how it is going to disappear very soon. I took some pictures of myself. (surprising as that may seem) They will be the before pictures. Nothing will ever be the same again. Shit, shit, shit.
So now I was pissed! Needed to get rid of the negative energy! Then I remembered that the neighbors across the street had asked me to get rid of the magpie nest in our tree because the magpies are a little crazy on our street it was also time for them to move! I knocked on the neighbors door and asked him if he would like to join me in this endeavour! He was glad (actually overjoyed) to help. Well, we poked and got the branches away. It felt good!
At noon, Anna, my neighbor and word-feud opponent came by for a walk. It was good to get out in the fresh air. We saw the signs of spring. Thanks Anna,
The afternoon has been spent just hanging around. It has been a few years since I have done that. The waiting game is not my favorite game to play. I am anxious and nervous but still want to get it over with and get this party started! I am thinking of getting a cool haircut before all my hair goes............ Maybe I can copy one of my other favorite singers, Pink.
In less than 48 hours I will have completed the two worst tests and found out tons of information that will give me the ammunition to fight this with all I've got. Keep your fingers crossed.
Awoke early as Peter's flight to London left at 8 am. Slept OK, but I feel more and more pressure in my neck and the coughing comes and goes. It was hard for Peter to go back to London and work. Our flight to Gran Canaries left at 6 am without us on it. I watched both that flight and Peter's flight on my Flightracker App. I thought about how it should have been but now how it will be instead this week!
Most of the Stockholm friends have left town for winter break skiing. My other friends are all in different time zones and that is great for having conversations on Facebook with them when they see I am on line. Middle of the night for them, morning for me! Those caring words mean a lot to me.
I was in no hurry to get out of bed today. But then the sun was out and I knew I needed to get moving.
I was thinking about how much I like my hair now and how it is going to disappear very soon. I took some pictures of myself. (surprising as that may seem) They will be the before pictures. Nothing will ever be the same again. Shit, shit, shit.
So now I was pissed! Needed to get rid of the negative energy! Then I remembered that the neighbors across the street had asked me to get rid of the magpie nest in our tree because the magpies are a little crazy on our street it was also time for them to move! I knocked on the neighbors door and asked him if he would like to join me in this endeavour! He was glad (actually overjoyed) to help. Well, we poked and got the branches away. It felt good!
Looks like the lymph glands system, I wish taking away this cancer was as easy as taking the nest away. |
At noon, Anna, my neighbor and word-feud opponent came by for a walk. It was good to get out in the fresh air. We saw the signs of spring. Thanks Anna,
The afternoon has been spent just hanging around. It has been a few years since I have done that. The waiting game is not my favorite game to play. I am anxious and nervous but still want to get it over with and get this party started! I am thinking of getting a cool haircut before all my hair goes............ Maybe I can copy one of my other favorite singers, Pink.
In less than 48 hours I will have completed the two worst tests and found out tons of information that will give me the ammunition to fight this with all I've got. Keep your fingers crossed.
Saturday, February 22, 2014
Surreal but nice....
2014.02.22
One of my favorite movies is Notting Hill with so many classic lines like "Surreal but nice." I have probably seen it 40 or 50 times. I just downloaded it on to my iphone so I can watch it during down time in the hospital.
Surreal but nice. Still feels a bit like it is someone else that has to go through all this shit, even though I know it is me who will do it. The nice part in a very melancholy sort of way is that the outpouring of support and meeting up with my friends has been amazing. It is sad that it takes something like this for all of us to take a step back and see what is important in life. "Our family and friends"
So when thinking about what fantastic friends I have and people who don't even know me that well, that want to lend a hand and help me get through this... it has been a crying type of day. The crying is good because it helps relieve all the tension in my brain and my body which is really tense and starting to hurt. Being loved makes me cry but oh so grateful to be loved!
I get energy and confidence from talking with my friends. Somehow they always know the right thing to say and do. Love all of you! Many have sent me quotes that are spot on and just what I needed.
How fun is it to be really sick and not understand all the words of this new sickness? The doctors are talking Swedish with cancer words in Swedish. I am thinking in English. Some of those words in Swedish are really hard. Cytostatika = Chemotherapy.
My modus operandi is to plan. I can only plan for what I know. So, how does my plan look? I have purchased 2 journals. One to keep track of what the doctors say and tests they have performed along with the results. I have titled it "Kicking Cancer's Ass." The other journal will be where I keep all the well wishes and quotes and things that my friends have said that are important to me. That book is titled "Secrets to kicking cancer's ass".
I have purchased a new backpack to carry these books, plus my headphones, a fleece jacket (very stylish, I might add) and anything else that might be needed. It gives me comfort to plan all the things that I can control. All those things I can't control well, I will have to go with the flow!
Peter heads back to London tomorrow to try and get some work done. This will be a challenge for all of us to adapt to the next few months as we move from the house and move to a new country! It will work because it has to. Just like I have to go through this to come out Stronger on the other side.
My fight song today, which I put on repeat on my iphone is Stronger by Kelly Clarkson.
One of my favorite movies is Notting Hill with so many classic lines like "Surreal but nice." I have probably seen it 40 or 50 times. I just downloaded it on to my iphone so I can watch it during down time in the hospital.
Surreal but nice. Still feels a bit like it is someone else that has to go through all this shit, even though I know it is me who will do it. The nice part in a very melancholy sort of way is that the outpouring of support and meeting up with my friends has been amazing. It is sad that it takes something like this for all of us to take a step back and see what is important in life. "Our family and friends"
So when thinking about what fantastic friends I have and people who don't even know me that well, that want to lend a hand and help me get through this... it has been a crying type of day. The crying is good because it helps relieve all the tension in my brain and my body which is really tense and starting to hurt. Being loved makes me cry but oh so grateful to be loved!
I get energy and confidence from talking with my friends. Somehow they always know the right thing to say and do. Love all of you! Many have sent me quotes that are spot on and just what I needed.
How fun is it to be really sick and not understand all the words of this new sickness? The doctors are talking Swedish with cancer words in Swedish. I am thinking in English. Some of those words in Swedish are really hard. Cytostatika = Chemotherapy.
My modus operandi is to plan. I can only plan for what I know. So, how does my plan look? I have purchased 2 journals. One to keep track of what the doctors say and tests they have performed along with the results. I have titled it "Kicking Cancer's Ass." The other journal will be where I keep all the well wishes and quotes and things that my friends have said that are important to me. That book is titled "Secrets to kicking cancer's ass".
I have purchased a new backpack to carry these books, plus my headphones, a fleece jacket (very stylish, I might add) and anything else that might be needed. It gives me comfort to plan all the things that I can control. All those things I can't control well, I will have to go with the flow!
Peter heads back to London tomorrow to try and get some work done. This will be a challenge for all of us to adapt to the next few months as we move from the house and move to a new country! It will work because it has to. Just like I have to go through this to come out Stronger on the other side.
My fight song today, which I put on repeat on my iphone is Stronger by Kelly Clarkson.
Friday, February 21, 2014
Loved, Snow, Blood and Supraclavicular lymph glands
2014.02.21
Two positives to this cancer for me.. (kind of)
I couldn't sleep too well last night. The tumor is growing fast and it is pushing against my thrachea which makes coughing and breathing a bit uncomfortable at times.
As I lay in bed feeling LOVED by all the prayers and well wishers from Facebook it made it a lot easier. I will treasure these comments and thoughts when the rough days are here.
As I look out the window and see the snow gently falling outside, it still feels like all of this is happening to someone else. It can't be happening to me because we have plans to move and start anew. Now it is just a bit more complicated. Thinking how to have an everyday life when the only thing that goes through my mind is holy shit!
I do feel loved and overjoyed that I have 3 wonderful kids who really showed their true colors yesterday! The doctor suggested just enough information to inform them. "A serious condition but curable with a bra fight". Kevin came home first and I told him. Then I joked around and said if I lost all my hair would he shave his head in solidarity? He said "yes".
Then Eric came home and I told him. Eric has been growing out his hair since August so when I asked him about shaving his head, he tilted his head to the side and said "can I just cut it shorter....." Kevin heard this and told Eric that he was shaving his head and Eric said OK.
Last was Marcus who came home, I asked him and he heard his two brothers already answer for him before he could also say yes!. Then Kevin said, it might not be a good idea for dad to shave his head because his might not grow back.......
Blood tests were scheduled for today! They are testing everything with 12 tubes of blood being filled. Sitting in the little room with the nurse and showing her my tired arm from earlier in the week, and it hit me. The tears starting running down my cheek and there was silence in the room except for the sound of the machine moving the vials back and forth. Shit, shit, shit!
Just cancelled the one week all inclusive trip to Masplomas in the Gran Canary Islands which we should have left for on Sunday! It is obvious that it needed to be cancelled but makes for the week to be a long one with the kids home from school and me doing all the tests at the hospital.
The information about all the tests just arrived in the mail. It was a thick package almost like when you get accepted into college but not as fun! Bone marrow sample, CAT scan, larger biopsy and who knows what else is planned for Tuesday and Wednesday. Looking forward to getting it over with so I know excactly what I am facing to kick some butt! The growth is on-in-with-around(?) the supraclavicular lymph glands and is about 7 cm big!
It feels good but strange to tell people who ask or who I do business with. The only thing is that when saying "I have aggressive non hodgins lymphoma" there is a silence as most don't know what to say. I know cause I was just like that too.
Now I have made the decision to suspend all operations in Creative Brick Zone and cancel all the birthday parties that were booked from March onwards. I really love what I do and I will miss it during these months!
A highlight of the day are the flowers from the neighbors! They really perk the place up now that the house is not styled anymore.......
I feel after just 24 hours that this is a crazy rollercoaster ride especially with my emotions! (and I am holding on tight and won't let go!)
Two positives to this cancer for me.. (kind of)
- That weight I needed to lose will be coming off once the chemo starts! Yea!
- Losing hair will let me be a redhead on the weekends and a blond during the week if I get some wigs! (or vice versa)
I couldn't sleep too well last night. The tumor is growing fast and it is pushing against my thrachea which makes coughing and breathing a bit uncomfortable at times.
As I lay in bed feeling LOVED by all the prayers and well wishers from Facebook it made it a lot easier. I will treasure these comments and thoughts when the rough days are here.
As I look out the window and see the snow gently falling outside, it still feels like all of this is happening to someone else. It can't be happening to me because we have plans to move and start anew. Now it is just a bit more complicated. Thinking how to have an everyday life when the only thing that goes through my mind is holy shit!
I do feel loved and overjoyed that I have 3 wonderful kids who really showed their true colors yesterday! The doctor suggested just enough information to inform them. "A serious condition but curable with a bra fight". Kevin came home first and I told him. Then I joked around and said if I lost all my hair would he shave his head in solidarity? He said "yes".
Then Eric came home and I told him. Eric has been growing out his hair since August so when I asked him about shaving his head, he tilted his head to the side and said "can I just cut it shorter....." Kevin heard this and told Eric that he was shaving his head and Eric said OK.
Last was Marcus who came home, I asked him and he heard his two brothers already answer for him before he could also say yes!. Then Kevin said, it might not be a good idea for dad to shave his head because his might not grow back.......
Blood tests were scheduled for today! They are testing everything with 12 tubes of blood being filled. Sitting in the little room with the nurse and showing her my tired arm from earlier in the week, and it hit me. The tears starting running down my cheek and there was silence in the room except for the sound of the machine moving the vials back and forth. Shit, shit, shit!
Just cancelled the one week all inclusive trip to Masplomas in the Gran Canary Islands which we should have left for on Sunday! It is obvious that it needed to be cancelled but makes for the week to be a long one with the kids home from school and me doing all the tests at the hospital.
The information about all the tests just arrived in the mail. It was a thick package almost like when you get accepted into college but not as fun! Bone marrow sample, CAT scan, larger biopsy and who knows what else is planned for Tuesday and Wednesday. Looking forward to getting it over with so I know excactly what I am facing to kick some butt! The growth is on-in-with-around(?) the supraclavicular lymph glands and is about 7 cm big!
It feels good but strange to tell people who ask or who I do business with. The only thing is that when saying "I have aggressive non hodgins lymphoma" there is a silence as most don't know what to say. I know cause I was just like that too.
Now I have made the decision to suspend all operations in Creative Brick Zone and cancel all the birthday parties that were booked from March onwards. I really love what I do and I will miss it during these months!
A highlight of the day are the flowers from the neighbors! They really perk the place up now that the house is not styled anymore.......
I feel after just 24 hours that this is a crazy rollercoaster ride especially with my emotions! (and I am holding on tight and won't let go!)
Thursday, February 20, 2014
A week of limbo
Thursday February 20, 2014
Well, I never thought I would write a blog because I am so much better talking than writing. But never is a crazy word and there are many nevers.
I never thought I would find a weird growth on my neck.
I never thought I would admit to a doctor that I don't usually look at myself in the mirror too much and that is why I didn't see it right away.
I never thought that I would hear the doctor say "Aggressive form of Non-hodgkins lymphoma" and that it is serious but curable with a good fight.
It all started last Saturday an hour before we were to sign the house contracts. I got out of the shower and looked in the mirror and thought that even with out my glasses that my necklace hanged a bit weird around my neck. Peter checked and agreed that all was not as it should be.
First we had to be at the realtor's office to sign the contracts and then I had a Lego party that had been booked. After that at 4 pm I went to the emergency room at Danderyds Sjukhus. By midnight not much had happened besides noting that it was not supposed to be there and some blood work didn't show any real strange results. This left me frustrated and worried.
Most of Sunday I googled "swollen glands on right side of neck" Googling is dangerous but helpful if you take it with a grain of salt.
Decisions are better made with all the facts. That is really how I do most things. Gather all the facts and then put it together with your gut feeling for the right decision.
So Sunday night I decided to take my health into my own hands and did not want to wait for the less than optimal Taby local doctors to get around to booking me a time to see a doctor who in past experience was less than fully engaged in any ailments I had.
Anyway I found a drop-in place called City Akuten that allows you to get seen by an Ear, nose throat specialist. It was an all day event but they did everything they could there and showed an interest. Doctor examined my neck, sent me to a sonogram to get a better picture of the extent, doctor saw me again and then said that a CAT scan was needed of my neck and upper torso, results were back and then I got another referral for a needle biopsy the following day at the big hospital. I left the doctors after 8 hours without a clear picture of what was really wrong with me. It did not seem like a big deal according to that doctor.
The next day at the needle biopsy I asked a lot of questions and started to google even more when I saw that the first doctor believed it was lymphoma. Holy crap! He said that the results would be sent by Thursday. It has been 48 hours of worry, googling and trying to work and be a mom to the kids.
Today is Thursday and this morning I decided that I needed to know and that right after working at school I would go to the drop-in and get the results. Somehow I knew that I needed someone with me. Peter is in London. I called my fantastic friend Mia and explain - a growth in my neck, results from the doctor - and the next thing she says is I can come with you!
The last thing I expected was bad news, but that is what it is. Mia got to cry and I was the comic relief and I also experienced the disbelief that is this really happening to me? Are you kidding me? WTF? I have other things to do right now and I have planned many more fun times in my life.
So, I WILL FIGHT this and WIN. I am a fighter with tons of friends that give me comfort by being there as I beat this cancer's ass!
(Oh yeah, once all the treatment is done, I am getting a tattoo!)
Well, I never thought I would write a blog because I am so much better talking than writing. But never is a crazy word and there are many nevers.
I never thought I would find a weird growth on my neck.
I never thought I would admit to a doctor that I don't usually look at myself in the mirror too much and that is why I didn't see it right away.
I never thought that I would hear the doctor say "Aggressive form of Non-hodgkins lymphoma" and that it is serious but curable with a good fight.
It all started last Saturday an hour before we were to sign the house contracts. I got out of the shower and looked in the mirror and thought that even with out my glasses that my necklace hanged a bit weird around my neck. Peter checked and agreed that all was not as it should be.
First we had to be at the realtor's office to sign the contracts and then I had a Lego party that had been booked. After that at 4 pm I went to the emergency room at Danderyds Sjukhus. By midnight not much had happened besides noting that it was not supposed to be there and some blood work didn't show any real strange results. This left me frustrated and worried.
Most of Sunday I googled "swollen glands on right side of neck" Googling is dangerous but helpful if you take it with a grain of salt.
Decisions are better made with all the facts. That is really how I do most things. Gather all the facts and then put it together with your gut feeling for the right decision.
So Sunday night I decided to take my health into my own hands and did not want to wait for the less than optimal Taby local doctors to get around to booking me a time to see a doctor who in past experience was less than fully engaged in any ailments I had.
Anyway I found a drop-in place called City Akuten that allows you to get seen by an Ear, nose throat specialist. It was an all day event but they did everything they could there and showed an interest. Doctor examined my neck, sent me to a sonogram to get a better picture of the extent, doctor saw me again and then said that a CAT scan was needed of my neck and upper torso, results were back and then I got another referral for a needle biopsy the following day at the big hospital. I left the doctors after 8 hours without a clear picture of what was really wrong with me. It did not seem like a big deal according to that doctor.
The next day at the needle biopsy I asked a lot of questions and started to google even more when I saw that the first doctor believed it was lymphoma. Holy crap! He said that the results would be sent by Thursday. It has been 48 hours of worry, googling and trying to work and be a mom to the kids.
Today is Thursday and this morning I decided that I needed to know and that right after working at school I would go to the drop-in and get the results. Somehow I knew that I needed someone with me. Peter is in London. I called my fantastic friend Mia and explain - a growth in my neck, results from the doctor - and the next thing she says is I can come with you!
The last thing I expected was bad news, but that is what it is. Mia got to cry and I was the comic relief and I also experienced the disbelief that is this really happening to me? Are you kidding me? WTF? I have other things to do right now and I have planned many more fun times in my life.
So, I WILL FIGHT this and WIN. I am a fighter with tons of friends that give me comfort by being there as I beat this cancer's ass!
(Oh yeah, once all the treatment is done, I am getting a tattoo!)
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