Cancer Card

2014.05.12

Monday Morning and I am home with the two oldest. I am responsible to get them out of bed. I should be so lucky to only have to say "get out of bed" once. I should really record myself and just put it on repeat. They always make it to school on time but I am most often stressed a bit because I think they should be there earlier.

Right after I dropped them off, I head to the Täby lab to leave some blood in anticipation of tomorrow's doctor visit. I get there at 7:58 am and take a number - exasperated that there are more than 40 people already waiting. Then I remember what they said the last time I was there. I went up to one of the nurses and said "Last time I was here, they said that if you have cancer you should speak up, what should I do?"  She said "Come right this way and I will take care of you right away." Five minutes later I was finished and on my way out walking right past those 40 people. Ok, one advantage to having cancer is you get to skip the line. Yep, I played the cancer card.

Then I came home and thought that I would get some stuff done before heading over to the hospital. I ate a little breakfast and then watched a little tv. I was feeling sad.  I feel the adrenaline is subsiding as Eric is getting better.  This is making my emotions more raw. I have had them in check to get through all of this. Mentally drained and not enough sleep makes all of this harder.

My friends call all the time and check in on me and offer to help. It feels overwhelming to be loved and cared about so much but I am getting better at accepting help. I realize it is necessary.

I got to the hospital and went up to Eric's room just in time for our diabetes training. Today the session was about ketosacidosis. That is exactly what happened to Eric. I asked the doctor for his numbers from when he was checked into the emergency room. Holy crap. His numbers in every measurement were off the charts. I am so grateful we made it in time and that the excellent doctors and nurses in the emergency room and the intensive care unit were able to perform a miracle. I am grateful for my son.

It was an interesting session and it was followed by a meeting with the dietitian and then the doctor. It was a long day and I was tired by the end at 4 p.m. It was time for a quick nap in the hospital room before we headed over to my oldest son's school for their 10th grade personal project presentations. I was so proud of him. He got the highest grade for his work. Awesome. Good to have some good news.

Now home again and I need to mentally prepare and reflect on how it will be when Eric and Peter come home tomorrow. Eric is hungry all the time and all he talks about is food. He has lost so much weight and his body is calling out for nutrients. This is to be expected but it means we will be pros in no time on carb counting and calculating the dosage of insulin every time he eats.

YES, I still have cancer. I almost forget myself because I have been so focused on Eric getting better. But, I am hoping the doctor will say everything is ok for chemo #5 to happen on Wednesday.  I really have no tolerance levels for any other set backs or road blocks.

LOVED. GRATEFUL. KICKING ANYONE'S ASS at this point. FRIENDS. FAMILY. FANTASTIC DOCTORS AND NURSES.

May 1 - everyone is on holiday.

2014.05.01

Even though I could sleep as late as I wanted- my internal alarm clock got me up before 6 a.m.
I chatted with friends, took the dog out for a walk in the morning SNOW STORM and gave myself the shot in the tummy.

SNOW on the car....

Then I went back to bed for a while.


Don't have (mental) strength to write about how much I really do not like Swedish regular healthcare. It really sucked today and I do not want to remember it. It has sucked almost every time I have had to meet them. Shit, it is so energy draining. I will not miss that part of Sweden at all.

By lunch time the snow was gone and I ate some lunch and then dozed on the chair until that afternoon appointment with an on-call doctor.

As I have a high risk for infection, any infection that is treated with antibiotics would probably mean that chemo would be delayed. Luckily the doctor did not prescribe them but I am worried for anything that would delay chemo.

This is going to be a tough 4 weeks, I can tell! Good thing my sister is coming on Saturday so I will have more support.

Home again and decided the solution for dinner was to do drive through at Mcdonalds. No one feels like cooking. We piled in the car and got that sorted in time to drive my oldest to his football practice.

LOOKING FOR POSITIVES. LOVED. GRATEFUL. FAMILY. FRIENDS. KICKING ASS.

Happy Easter Saturday!

2014.04.19

A long night that resulted in many hours sleep just not all in a row. There was  a middle of the night hot chocolate and sandwich break at 2 am. I was lucky then to have a chat on FB with Kim. Thanks KIM.

I fell back asleep and woke again at 6 am. At our summerhouse it is pretty good when the dog has to go out. We have a lot of forest around our house and I just go out with her and she does her business. Awesome. I took her out and then went back to bed. All of us sleep a lot better out here with all the fresh air.

The morning fog lifted and gave a brilliant sunny day today!

Finally mid-morning and we eat our first breakfast, get ready for the day and then it is time for our second breakfast (brunch). I am feeling tired even though I have been in bed so many hours. But better to rest so I can be in on the festivities in the afternoon.

Early afternoon and it is time to head to Farfar and Evy’s house for Easter Eve Lunch. All of the cousins were gathered. All of the usual Easter foods (Swedish style) were served. And everything tasted great as usual. The kids love going there for the annual egg hunt.  They have to eat lunch first and then they start together and look for the hidden egg on the property with their name on it. They can’t open their egg until everyone has found theirs. They are so happy when they can open it and start eating the candy. Thanks Reinhold and Evy for a great day!

The cousins with their Easter Eggs filled with candy.

I got a chance to rest when the rest of the gang went down to admire the new dock. It felt good to rest after sitting out on the back deck in the sun for a couple of hours. I tried to tan my bald head. Not sure it made a difference. 

We came home around dinnertime with Jenny, Patrik and Ulrica who are sleeping over tonight. We whipped up some dinner while the kids and Peter started a quick little fire to get rid of some small trees. Not so many matches and fresh trees means not everything burned. The 5 ravenous children ate up dinner quickly. It is so fun that the cousins can spend time together.

Tea and the rest of the girl scout cookies were enjoyed by us adults. Now we are just going to relax and watch the Beatles special on TV.

I am tired but not overtired. Otherwise I feel good and I appreciate every day that it is that way. Can’t wait to be done kicking cancer’s ass but know that I need to take it one day at a time.

LOVED. FAMILY. FRIENDS. KICKING CANCER’S ASS. BALD HEAD. GRATEFUL. 

Fabulous Friday

2014.03.28

Couldn't fall sleep last night even though the day was a long one yesterday. It is those steroids. So only 5 hours of sleep but I was not too tired today. Took the pills, went out with the dog, got the kids up and off to school just like usual. I looked in the mirror and almost didn't recognize myself this morning with the hair gone.

This morning was spent preparing for our lunch guests. My Mom worked hard on her Lemon and Basil chicken and we were not disappointed when we ate it. I chose the vacuuming of the house because it really needed it.

Finally, Ann and Hans were here. My parents and I met them almost 24 years ago in a youth hostel in Kalmar when we were all making dinner in the kitchen. It is amazing to think that life is a bunch of random events that can result in new friendships from a chance meeting somewhere. Is it FATE?

We all had a great time and it was fantastic to have them here today. We laughed, ate, laughed again, ate dessert, laughed and enjoyed ourselves immensely. We spent the whole afternoon together. Grateful to have them in my life and for all the support and love they show. THANKS ANN AND HANS.

It was a beautiful day, sunny and warm. Spring is here. FINALLY.

Peter is on his way home for the weekend. It will be good to have him home. Family time is precious.

Friends and Family are the energy of LIFE. I am full of ENERGY.

GRATEFUL. LOVED. FRIENDS. KICKING CANCER'S ASS. 

Laughing all the way........

2014.03.20

We are one day away from the official start of Spring and it could have looked better.......

This might be what I get as my tattoo.

Morning routine works pretty good now. Dog walk in pajamas, get kids up and ready for school, needle jab in the belly, pills to be taken, deliver kids to school and train station, go for a walk, eat some breakfast.

I did some research on the treatment that I am receiving. It is an interesting science how these different drugs work. Diffuse large B cell lymphoma (DLBCL) is my type of non Hodgkin lymphoma. Doctors often treat DLBCL with chemotherapy called CHOP and a drug called rituximab. This combination is called R-CHOP. Rituximab is a type of biological therapy called a monoclonal antibody. It targets a protein called CD20 on lymphoma cells. The antibody sticks to the CD20 protein. Then the cells of the immune system pick out the marked cells and kill them.  

So the drug rituximab finds a certain protein, hangs a ride with it and goes in and kills the cancer cells. That is pretty cool. Thank you to all the scientists that persevered and found out that this works. It will be one of the things that will save my life.  Left untreated the cancer that I have would be fatal quite quickly because it is so fast growing. That is what is so amazing - this treatment of R-CHOP will kill the cancer and save my life.  GRATEFUL

We need to get more kids interested in the sciences and research so that they can develop even better drugs and medicines. Playing and building with LEGO from a young age is a great start to understanding how things fit together in a system and why certain pieces can only be used in certain ways. BUILD SOME LEGO TODAY.

OK, so lunch was some soup. Then it was an afternoon of tv, laughing, eating, sneaking a few Twizzlers and cleaning out the food pantry where we found a few exciting items and taking a walk with my mom. The mailman brought a great surprise from Clara - a t-shirt that I will wear for chemo #2. It says "Life is about kicking ass, not kissing it" THANKS CLARA.

from a company called bravelets.com 

The walk with my mom was a bit exciting. My mom and I were nearing the end of our walk and were walking down a residential street in our neighborhood. Walking in the other direction on the other side of the street was a young women who I did not know or recognize. As we walk past her my Mom tries to practice her Swedish and says loud and clear to the young woman loud:  "Hej då" which means GOODBYE. I quicken my pace and then start laughing thinking of the expression on that girls face. It was classic.

Dinner was chicken with rice-a-roni and broccoli. YUM YUM. Then it was a game of rummikub which Marcus won and all the kids got to share a big bag of American candy that they had been longing for. 

I am getting better at passing the time and living in the moment. My friends are amazing. I don't think I can say it enough. LOVED.

KICKING ASS. GRATEFUL. LEGO. CANCER RESEARCH. LOVED. FRIENDS.