Ice, delays and more ice 

James made it to his appointments today despite the warnings of the local weathermen and news anchors. He hopped in his ice covered Chevy Cruze and headed to MDA, earlier than planned, in hopes of getting his treatment and getting out of dodge. That didn’t happen.

His blood work was ok. His CK levels were in the mid 500’s. He feels they would have been in the 700s had he taken his chemo the past two nights. Otherwise, I am assuming his blood work was all A-OK. He headed to his infusion and ended up waiting a good 4 hours. That is what happens when an ice storm hits Houston and the clinic is inundated with patients wanting their treatment despite the craptastic weather and a low volume of staff who decided to stay home, safe and sound. 

James had his infusion and will not take his chemo for the next two weeks. It is likely they will reduce it to 20mg per day as his body just does not want to adjust to this foreign agent known as Cobimetinib. 

We shall see what happens in 2 weeks.

At this moment, James is driving the 9.6 miles back to our friends house hoping to avoid any bridges and Texas drivers who aren’t quite as experienced in winter driving, like those of us from the frozen tundra. 

Pray for his safety and that he is able to hop on his re-scheduled 2:20 flight tomorrow afternoon! Thank you for your continued prayers and support! ♥️

PS – here is the picture I got today! Isn’t it fabulous? 😂

2,583g

That is the number of the day.  If I could play these four numbers in the lottery and win, I would, but who has money for a lottery ticket these days.

I am not sure what week we are on but James is on his way to Houston for his first infusion of Cycle 5. Please pray for him. Last night, he felt “off” and did not take his chemo and then felt somewhat better today. He knows the ins and outs of his body and the effects these medications (mostly chemo) are having on him. I trust his judgement and if he is having an “off” day, I don’t question it nor try to worry too much about it.

This has been a rough 10 days in our “cancer world”. When you have been living with cancer for so long, it seems that the ones you keep in touch with are those who also live with it. Sadly, the non-cancer friends are few and far between.

As you pray for my handsome hubby this week and all of his tests, please keep the following families in your thoughts as I can’t fathom what any of them are going through.

  1. The sweet Wagner family. #TeamRyan has put up a courageous fight and has entered hospice. His wife Ashley and their son, Miles, living there with them on a blow up mattress. Not sure how I found them, but she was one of the first in my quest for answers/companionship.
  2. My friend Tiffany. Her husband has overcome horrific set backs only to be told there is nothing left to do for him. He has also entered hospice. They have two little girls who are on the verge of losing their dad and her, her husband.
  3. The James family. Laura had appendix cancer, has twin 3 year old girls and was on the same trial as my James. She passed away after a small bowel obstruction could not be treated. I just found this out today but it has sent me reeling even though every PMP patient is different, no story is the same but this hits very close to home.
  4. The Olson’s. Eric also has appendix cancer. They have two young girls and the immunotherapy did not work and he is returning to chemo. We love this family, like our own and our hearts break for them.
  5. Finally, my young cousin who was diagnosed with AML. She has a young family and is going through intense treatment.

Cancer knows no bounds and could care less the age of the person or the kind of life you lead. Some are blessed to be diagnosed and cured while others are diagnosed, treated and kept alive a bit longer. There is no rhyme or reason. Sometimes it is hard to understand why one is cured and your loved one is not.

Sometimes it is hard to understand how you have managed to fight for 2,583 days. How you have managed to tell people your husband or your dad has cancer and it is now 2,583 days or 7 years, 1 month and 5 days or 85 months and 5 days or 370 weeks and 3 days. Sometimes it is hard to imagine how you kept together this long.

Believe me, I am thankful for the 2,583 days. That is 2,582 more days than we thought we would have when he was first diagnosed and 2 years 1 month and 5 days more than the 5 year life expectancy he was initially given. I am thankful that the days, weeks, months and years are adding up.  But I am tired. We are all tired.

One final request, please keep our kids in your prayers. Carlie and Luke are strong, they are resilient and very rarely, if ever, will show you their fears or concerns. This is their life, their normal and has been for most of their young lives and they hide it well and manage to function on a daily basis. Please remember them.

A bit selfishly, please pray for me. I start a second (part time) job this weekend in hopes to be able to keep up with ongoing cost of James’ treatment. I will be gone on the weekends which will be a huge adjustment for all of us.

Thank you so much!

End of Cycle 4

James had really good appointments today. 

1) his blood work is all good. Liver, Kidney, blood counts all normal. His CPK dropped from 1083 last week to 382 today. Chemo will continue at the 40mg per day. 

2) tumor markers have fallen again. This time to 155. It has been a long time since we’ve seen a number that low (2015 – after surgery) 

3) scan is stable. No new lesions, all existing lesions are unchanged, does not appear to be spreading. 

While tumor markers are not that reliable, Dr, Raghav states he can’t disregard the tumor markers dropping when there is no growth in the tumors. It simply means the tumors are less active since he has a steady trend of falling numbers. 

Continue to pray for James and for our family please. 

Big test week! 

Please keep my super awesome husband in your thoughts and prayers this week as he travels, once again. 

He travels to Houston tomorrow night and will return on Thursday night. He has the whole End of Cycle gamete of tests this week, which marks the end of Cycle 4 (4 months).

Wednesday – labs (please CPK level be down and lower tumor markers would be a plus), echocardiogram and CT scan (please no growth or reduction would be lovely)

Thursday – ophthalmology appointment, RESULTS and, hopefully, infusion. 

We love you, James!! ♥️