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.

Parallel Universe

2014.05.11

The last few days have been a blur but I need to write about them so I can let go and also so I can appreciate all that I have gone through when I come back and read this in 6 months.

Thursday, May 8th

The entire day was spent in the hospital in the intensive care unit as they worked on getting Eric's body back into its proper state. It wasn't until the late afternoon that he showed a dramatic improvement. Tuesday and Wednesday he was like a zombie- no energy and barely talking. I must say that the staff in this unit are fantastic. Just amazing how well they take care of him and us. By the late evening, the doctors thought that his values had stabilized enough to move him to the regular ward. It was a relief. All the nurses came and gave us hugs. We sure were a sight - the mom with cancer and a clump foot and the dad that arrived from London in the middle of the night.

I am working off of the adrenaline and I have tons of energy. The only focus is to remember to take my medicine three times a day and that Eric is getting better. Good thing my sister was here to give support and to make food for the other two kids at home.

Friday, May 9th

What a day! The only available appointment at the orthopedics was at 8:30 am which meant braving "rush hour" traffic on E4. Two nurses take me and my sister to the examination room and are going to remove the bandage. I inform them that I do not want to see it at all and promptly turn my head away and close my eyes. I am just not ready. It hurt a bit when they took off the bandage and I cried just because of all the pent up pissed off feelings about having to go through this shit - and they needed to be released somewhere- crying is always good.  The doctor came in and said the infection was gone and that it all looked good. My sister was so lucky to be able to see and experience all of this.

Not looking......a little bit of pain never hurt...

Enjoying her visit to Sweden

Right after that it was time to hobble over to the children's hospital building to go through the Diabetes training that is mandatory for us parents and for Eric before he can go home. Then we had a private review with the head Diabetes doctor about Eric. Again- thankful for all the scientists and researchers that have studied this disease and make it into a livable condition.

First time out of bed in almost 3 days!

I needed to have a break- so my sister and I went into town and ate lunch at a nice restaurant. I felt bad that her only perspective of Sweden has been a half day visit to Gamla Stan and then the rest of the time spent in different wards in the different hospitals either for me or for Eric. It was good to be normal for an hour.

Then we headed back to the hospital and I switched with Peter so he could go home for a few hours and then come back and sleep over. Eric is sharing a room with another boy that got Diabetes the day before him. They are sharing this experience together. Awesome! That evening Eric was disconnected from all the drops and could finally change his shirt that he had been wearing since Tuesday and had puked on. That was a good sign. He also took his first insulin shot. What a brave and accepting kid! I got home at 10 pm that night and finally fell asleep at midnight.

Eric's first real meal. Yippie!

Saturday, May 10th

Wow, slept until 8:30 am. I think I needed that. I am exhausted but I only feel it the few minutes I sit down each day. I am worried that I won't be able to stand up again, but I always do. My sister and I drove down to Gnesta to pick up the newly covered dining room chairs. It was good again to get away from the hospital routine and to check one thing off my list which is getting longer but with less days to complete it. A challenge to say the least.

On our way back we were hungry and stopped at Burger King. I took a coca-cola for the first time in 3 months. It tasted really different now and not as appealing as it was before. Hopefully, I have been cured of the need to drink that empty calorie drink for good.

Aunt Kris saying good bye to Eric.

I relieved Peter and stayed at the hospital until 6 p.m.. Eric is taking his own shots, counting his carbs and maintaining his great attitude. His easy acceptance of all of this has floored me! I am speechless.

Went home and picked up my sister and the two older boys so we could try a new restaurant in town. The company and laughs during dinner were great, unfortunately the food and service could have been better but we had fun anyway.

Home in time to see the Eurovision Song Contest and let my sister really experience a one of a kind show and another perspective of Europe. Sweden came third - good work Sweden. Sleep finally came at almost 2 am- every time I closed my eyes, I just imagined what they had done to my toe. Eventually- I dozed off.

Sunday, May 11th -morning...

Awoke early so as to take my sister to the airport for her flight back. It was a quick week and a different view of Sweden that she experienced but I am grateful for all of her help. Now I have had my coffee and am preparing to head back to the hospital for the day. My toe is feeling better and I am going to make a list of what I need to do. Peter sent me a picture of the boys eating breakfast and I am happy that everything is headed in the right direction....one step at a time.

Boys eating breakfast!  

I write this blog for myself- that is and always will be my intention. But, I am so grateful for all of you who read it and then comment or send messages because that is what I read and refer to when I might be feeling down or need lifting up. Thank you to all of you who pick me up off the floor with your love and support! 

LOVED. GRATEFUL. AMAZING SON. KICKING EVERYONE'S ASS now. FAMILY. FRIENDS. CANCER SUCKS. LIFE IS GOOD.

Life throws another CURVEBALLL.

2014.05.06 and 07

Well, life has a funny way of changing my plans for life:

Tuesday:
Eric is home from school for a second day.

Lab work at 9 am, doctors appointment at 11 am.

That is where the day started to unravel. The doctor asked me how I felt and I was honest. I felt tired, dry mouth and my big toe was infected. Once he took a look at my toe - everything changed and became more stressful.

Plan of action: delay chemo with one week, antibiotics for 10 days, emergency visit to orthopedics to remove said toe nail.

Shit, shit, shit, shit. NOT any of the things I had planned for. 

The removal of the toe nail was painful as all hell even though I had my eyes closed and was given some sort of sedative to calm my crazy nerves. I survived it and was hoping when I got home to have time to rest and reflect.

Got home at 4 p.m. and went in to see Eric. He had been puking all day and could not get up from the bed without my help, he was pale as a ghost, dehydrated and had huge black circles under his eyes. Now I knew all was not right with him.

I had been given strong painkillers so my sister had to drive us right back to the hospital with Eric in the back seat - puking but asking for more water.

We got to emergency room at Astrid Lindgrens Childrens Hospital and Eric could only lay there on the chairs. My foot was killing me so I laid on the other chairs. Once they took us to ask questions and I said the answers, the nurse scooped him up in her arms and ran into the emergency section calling after several doctors.

In less than 5 minutes, the doctor had taken a sample of his blood and tells us he has diabetes. I am in shock. The next half hour is 8 or 9 doctors or nurses pumping stuff into him through both arms, as he was not responding as he should. It was diabetic ketoacidosis. It was a close call. After an hour and a half, we were moved up to the children's intensive care unit so they could start the diabetes protocol to get him back on track. I had called Peter and he was on his way home from London and he arrived at the hospital at 1 a.m. I got home at 2 a.m. and slept for 4 hours.

Today- Wednesday

LIFE is turned upside down! But we are not giving up!

I relieved Peter right after lunch today and spent the next 9 hours with Eric. He is getting better but not exactly how the doctors had hoped. It is a watch and wait and test of the sugars and insulin to get it right.

He will be in the hospital for a week and we as a family will learn how the new reality will be for all of us.

So, I still have cancer, my foot is killing me and I hobble along slowly, chemo is delayed which messes up the moving plans and I am still bald.

The nurses in the ICU loved the chocolate chip cookies that I brought for them today. It was the least I could do for them helping to save my son's life.

LOVED. GRATEFUL. KICKING CANCER'S ASS. KICKING DIABETES ASS. FAMILY.