ONE YEAR AGO TODAY

2015.02.15

SUNDAY

It has been exactly one year today that I looked in the mirror and saw that my neck looked funny. That is a moment that I will not ever forget. It meant that the following five days were tests, questions and then a diagnosis on the 20th. holy crap.

I still remember that feeling of disbelief as Mia and I walked out of the doctor's office. I was cursing and in shock. How I managed to get through it all the way to today is really a mystery to me. I had no choice really because I love life too much to do anything else but fight it (that darn cancer).

To celebrate life and because I am in remission, we are heading this afternoon to a warmer climate with some sun, beach and relaxation. It is a well deserved time for me and the rest of the family. I really need to recharge my batteries and just enjoy myself. Going to make some happy memories.

There is a spa at the resort and I have already decided that I am going to do a different treatment each day, just because I am worth it.

The days before a trip always result in me trying to think of everything and then pack for all possibilities for all of us. This time a round I am still trying to think of everything but I am sure that I have forgotten something. (even though I have made numerous lists and then forgotten where I put them) I am exhausted but can breathe out once we have checked the luggage in and are sitting on the plane.

This year compared to last year:

I put myself first now.
I try to simplify everything I do.
I appreciate everything I see, every chance meeting I make, every raindrop and rainbow.
I look in the mirror.
I feel confident enough to cast away that niggling feeling that the cancer is going to come back and
I just enjoy life each day.
My definition of "enjoying life" has changed since last year.
I take selfies. (and I think it's fun too)
I exercise often, eat well and have cut out almost all processed foods.
I only hang out with people that give me energy.
I have some scars on the outside that add to my character.
I still believe I can do anything as long as I set my mind to it.
I appreciate all the doctors and nurses who cared and all the scientists who researched R-CHOP.
I feel thankful and overwhelmed by all the people in my life.

The new me is still taking some getting used to by me, by Peter and by everyone else. (It's harder for them than it is for me.)

365 days, 52 weeks, 12 months, many tears but oh so much more laughter during this time.

Now it is time for sun, sand, spa and just relaxation.

LOVED. GRATEFUL. FAMILY. FRIENDS. KICKED CANCER'S ASS. LOVING LIFE. LIVING LIFE. 

Still in REMISSION

2015.01.30

Yes, my updates have been worse than sporadic. I agree. Just when I thought I could sit down and unload all that has been accumulating in my brain.......my mac dies. I have ordered another one but the delivery is not until next week. So, this post is via my son's borrowed mac. (although I didn't get his password)

Stockholm is so peaceful in the winter.

January is coming to a close and I have done tons of stuff and at the same time not many of those things that I should have done.  Always room for improvement.

I have been more aware and tried to really live in the moment. I do see an improvement from last year. (still have some side effects that are a drag but learning to live with them.)

Time with friends and family is like taking a medicine to make me feel better. That is really the best medicine for me. Suffice to say that I have been taking a lot of "medicine" this month.

Last week it was time for my 6 month check-up with the requisite blood work beforehand. This was followed the next day with the operation to remove the implantable port. I have been preoccupied with other things and not so focused as I was last time so my anxiety and stress level was much lower. I was almost calm. I have kicked cancer's butt before - worst case I could do it again........

I arrived in Sweden a few days before my appointment so I could go to Charlotte's 40th birthday party. The day of the party I got up late and lounged around the house (in my pj's) all day until it was time to leave for the party. It has been a while since I've done that. It felt GREAT.

Such a fun party. A great time dancing, eating and spending time with good friends. I am so lucky to have so many people that were supporting me and so happy that it was now a happy occasion for us to get to together. GRATEFUL.

I met up with some of my other friends and spent quality time just living in the here and now. THANKS SARA, STINA, and MIA.

It is a dilemma of how to visit everyone that I miss. It will be hard. I need a solution.

Monday morning and I needed to head to the hospital early to leave blood. On my way there, I call Anna and find out that her daughter had just been diagnosed with diabetes two days earlier and was at the same hospital I was going to. So we meet up quickly and I give hugs and words of encouragement. They have a great children's diabetes center at that hospital.

Then it was time for my appointment with Dr. Claes. Everything looked great. It was a relief. I thanked him profusely for all that he had done. It felt good but also a little surreal. This is the calmest I have ever been. Now it was time to celebrate.

Yippie!

On my way to Sara's house I picked up a Princess Cake which is my favorite type of Swedish cake. I got to spend time with Sara and her family and meet her newborn son who is the cutest.

 

The next day was the day I was most anxious about. Removing the implantable port with just local anesthesia. What better way to spend the time until the afternoon appointment than to visit SOUL and get my massive amount of curly hair cut and then to have lunch with Mia.

Chemo curls have made my hair extremely curly. Hair product has been necessary since October to keep it in place. I reached the decision to cut it and let it grow back when my oldest son called me Einstein about two weeks ago. You all know which picture I am talking about:

Before the haircut: Einstein

Before the haircut: me

Me after the haircut.

It was great to see Ulrica and Sophie again. It is such a warm and loving feeling at SOUL. THANKS ULRICA for squeezing me in on such short notice. GRATEFUL.

Lunch with Mia after was Indian food and then a walk for me in the cold weather of Stockholm to finally get this thing out of me.

So many emotions as I sat in the waiting room. It is overwhelming. Anxious. Determined to keep the implantable port once it is out of me. Shock at a "no" answer to keeping it. Crying. Disbelief. All alone. Determination. Inevitable removal. Headphones in with "Brave" by Sara Bareilles on repeat. EYES CLOSED. Three needles. Time to begin says the doctor. Focused. Sad. Tears streaming out of my eyes non-stop. Too much emotion. Nurse rubbing my arm. Time passing by too slowly. Weird sensations of pressure but no pain except for the emotional release of all that has happened. OK, just sewing up the vein now before he sews up the rest, says the nurse. "crap, my vein was opened?" goes through my head but not out my mouth. Surreal. Finally finished. Said my peace about why it was important for me to have it. NOPE, there are laws to be followed. OK. Good to go. Time to drive to Mia's house. I survived. GRATEFUL.

This is an implantable port. That tube was in my artery.

About the size of a silver dollar and
as high as a piece of LEGO.
In the center is where the needle for the chemo went.

I thankfully spent the night at Mia's house and as usual enjoyed a great dinner and fantastic company. HAPPY. THANKS MIA.

The next morning it was a quick visit to my mother in law before I headed to the airport. That was fun to pull and hold my luggage with just my right side so I wouldn't rip the stitches. 

Sad to leave Sweden but oh so happy to get back to London. The new life that is starting to take shape here is so exciting. The possibilities are endless.

I am eating well, exercising, trying to figure out why I am not losing weight, still motivated and just got the latest activity tracker that is perfect for me. It is called the Fitbit ChargeHR and I love it. It has a heart rate monitor, counts my steps, lets me track my sleep patterns, food intake and exercise and it looks good on my arm too. So psyched to challenge myself. (and any others that are up for a challenge)

Number of steps I have taken today...

GRATEFUL for the fabulous friends I have made here. They are amazing. Overwhelmed with gratitude. 

KICKED CANCER'S ASS. REMISSION. 

GRATEFUL. FRIENDS. 

BRAVE. STITCHES. 

NEW ME. NEW LIFE.

KICKED CANCER'S ASS

2014.06.19

THURSDAY

It has been exactly 4 months since I sat in the doctors office at City Akuten with Mia and got the news that I had non-hodgkins lymphoma. Mia cried and I was in shock. This is not happening to me. So began this journey and today it would be the beginning or the end of something after the doctors appointment to find the results of the most recent tests from Monday.

I have undergone 6 cycles of RCHOP given every other week. I had a few preliminary tests and procedures done before chemo that hurt like hell but were necessary to determine the extent of the cancer. I had a toenail removed due to an infection. I have had some side effects to these powerful drugs to kill the cancer - which have taken a toll on my body and won't be better until a year has gone.

Today is the day. I woke up early after having trouble to fall asleep last night. Not nervous but anxious in a subdued way. Hoping for the best but forcing myself to consider the worst. Peter was very anxious too. It is hard to be the spouse to a cancer patient, probably a very helpless feeling.
I fell back asleep and then woke up around 9 am. I asked Peter to make me some American pancakes. He did. Thanks Peter. The tension in the air was thick. We are all thinking about it, but not really talking about it.

The messages of good luck and well wishes were making my telephone sing. (my heart too.)

Finally got around to showering and getting ready. I briefly considered not even going to the appointment, think if I could just live in ignorance of the results. NOPE, that's not how us humans work. We need closure and we need to know.

The time to go was approaching and my anxiety level was building. Deep Breathes.......

I packed my backpack with my journals and list of questions to the doctor. I put the bottle of champagne for the doctor in the bag and zipped it up.

We said bye to the kids and headed towards the hospital. I could tell that Peter was anxious because he talked about everything but what we were on our way to do. We were both thinking about it in our own ways. Of course, there was a bit of traffic but we made it with plenty of time to spare.  I had HAPPY on repeat and we listened to it way too many times according to Peter.

We checked in and then went to sit up in the waiting room. Peter said he didn't know if he would be able to (or want to) read the doctors demeanor in advance to see if it was good news or bad news. We came into the office and sat down. My head is cloudy, foggy, not 100% receptive to all that he is saying.

He takes out the report from the pet/ct scan and starts explaining "the lymph nodes have decreased from the last time from a size of 29 x 12 mm to the size of 22 x 6 mm"  I am thinking "it is not all gone" panic. OK, so it has gotten smaller but its not gone?  that's right says the doctor. Then he goes on and reads the next line "it does not show any increased FDG uptake."

INFORMATION about this radioactive substance that they used to determine how much cancer is active:   FDG = fludeoxyglucose. 
F-FDG is taken up by cells, phosphorylated by hexokinase (whose mitochondrial form is greatly elevated in rapidly growing malignant tumours), and retained by tissues with high metabolic activity, such as most types of malignant tumours. As a result FDG-PET can be used for diagnosis, staging, and monitoring treatment of cancers, particularly in Hodgkin's disease,non-Hodgkin's lymphoma, colorectal cancer, breast cancer, melanoma, and lung cancer.

So the FDG uptake means that the areas of high cancer activity show up on the imaging. In my case, nothing showed up even though the tumor is still there. It is now just dead cells.  Karolinska Hospital has a lymphoma protocol on how they treat the disease. Because my tumor is less than 2,5 cm then there is no need to give radiation or any further treatment. 

Once we understood that it was gone and no cancer activity, my husband was overwhelmed with emotion and relief and jumps out of his chair and gives the doctor a big hug (at least 30 seconds long) then he comes over to me and gives me a hug. I can feel his relief in his hug and start to cry too. We are still in shock but happy. Now it is time for me to ask my 20 questions about all the side effects, limitations, next steps and let him take a last look at my toe.  

My family in the USA is so anxious to know results that during the appointment my phone is ringing with a FaceTime call from my niece. I answer and tell her I will call back soon and the news is good news. The rest of the calls - I just let the phone ring on vibrate.

Side effects will take about a year to go away. Not too much to do about them- just accept. I can now go swimming and get my toe wet. (my toe hasn't been wet since May 5th), our trip to the USA is a go, next appointment is in September. Risk for infection still high for next three months, need to be aware of that. Still numb, calm and quite it was time for us to go. 

Dr. Claes Karlsson and I

Before we can leave his office, Peter gets out the bottle of champagne and says "Thank you" Then it is time for a picture so I can have a memory of this great day.

We leave his office and walk down the corridor, right past Olga's office (a.k.a the bone marrow biopsy hard handed doctor) and I don't care. All of it was worth it.

It feels like we are walking on a cloud. We head to the pharmacy to get my last medicines. I have started to text all the people that needed and wanted to know right away. My phone is buzzing with encouragement.

We treated ourselves to lunch at Stallmastergården. YUM YUM. Some Swedish specialties. I updated Facebook with the news and it was fantastic to share it with everyone that has been so supportive these past four months. I can't say thank you enough to all of the people that have cared and supported me throughout this fight against the cancer.  

Kalix lojrom........my favorite

We took the long way home through Vaxholm and the car ferries after stopping in Täby. 

The sun started to shine the closer we got to home.

Cows in the fields just enjoying themselves.

Upon arrival we are greeted by the kids. Eric has made a really neat drawing of the cancer cells being killed and all gone. Everyone let out a collective sigh of relief. Then everything was back to normal for them.

Opening the champagne.......

After a little while it was time to give the kids some food. Then it was time to pop the bottle of champagne and enjoy it with some strawberries. (Ok, I need to admit that this will be my dinner tonight.) I am now on my fourth glass of champagne, feeling quite tipsy but content.

Peter is excited because he gets the honor of guest blogging tomorrow while I am packing for our trip. 

Now my goal is not to lose focus of what is most important in life and to live life to the fullest, starting right now.

GRATEFUL. 

LOVED. 

KICKED CANCER'S ASS. 

FAMILY. 

FRIENDS.