Month #5

Today begins the 5th month James has been in the clinical trial.

Today his cold or whatever the heck it was seems better. He sounded more like my James today, which made me happy.

His CK number was completely normal; however, he hasn’t had chemo for 2 weeks. They restarted the cobimetinib again today but dropped his dose to 20mg/day. This is likely the lowest he can go with the chemo.

He is getting his infusion of immunotherapy as we speak and hopefully will make his 5pm flight home! 🤞🏼

Thank you for your prayers.

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? 😂

2,583

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!! ♥️

Happy Christmas

We hope you all had a great Christmas and enjoyed your family and friends. 

We had a quiet Christmas and enjoyed our time together. James has felt good and the kids had a scaled back, happy day! 

James had his blood work today for his CK levels (Creatine levels). Last week his levels increased to 750 today they jacked up above 1000. 

This is off week from chemo, so theoretically his CK levels should drop this week. 

Honestly, we don’t know what this means. We do know that the chemo is causing this creatine level to increase and they have already dropped his dosage from 60mg to 40mg per day. I am not sure if protocol will allow them to drop to 20mg per day. 

So, once again, the Richters have a prayer request.  Please pray for James to continue to feel well and once again his numbers drop and stay dropped. Also, please pray for his upcoming scan and his echocardiogram (especially with these high numbers) next Tuesday.

As always, thank you for your prayers and groovy vibes! xo

7 years and counting…

Today marks the day that our journey with cancer began. ½ of Carlie’s life and the majority of Luke’s life has been spent watching their dad fight a disease that is sneaky and most likely devasting. They have been brave and make sure that they keep the faith that their dad will be A-OK. 

7 years ago, this all started with a sharp pain, which we thought was a ruptured or inflamed appendix or related to the ribeye sandwich the night before. He went to the ER, had a CT scan that lit up like a Christmas tree and was then referred to North Memorial Hospital for what we were told was likely stomach cancer. At the time, we thought our time together was short. There was silence. 

You are kidding, right? James doesn’t drink, smoke, he was in great shape and eating healthy. How could he have cancer, let alone stomach cancer? He has no trouble eating. He is fine except for this pain in his side. 

The next 3 days were awful. My grandpa was home with my kids, my parents were trying to get to MN, and every day James deteriorated before my eyes. They were running test after test, all normal – all benign. He wasn’t able to eat, or drink. He was fading away and it was happening fast. On 12/23/10, he gladly jumped onto a surgical gurney, for emergency exploratory surgery. The surgery lasted 3 hours and well into the early morning, and he was sent to recovery not really knowing much more than we did before he went in. His appendix was unrecognizable, they did a right hemicolectomy and told us he had a jelly like substance all over his abdomen. 

The good thing was he was able to start eating and drinking and my husband started to rebound. The bad news is we would likely wait a week for pathology because of Christmas. We did receive a preliminary result of Appendix Cancer and the surgeon said his life expectancy would be about 5 years!! Well, that was 7 years ago..

My real life Superman has undergone two cytoreduction surgeries since then, with one of them including HIPEC. He has surpassed the 5 year mark and continues to fight this nemesis every day. 

He is now in a trial and seems to be doing well with relatively good results so far but it is cumbersome and tiring. 

Life has gone on. Not always easy and not, at all, how we thought our life would be, but we continue to be blessed. Our life is good and my little family has come so far. 

We wouldn’t be here today without the love and support of our family and friends. We wouldn’t be here without your prayers and help, financially, when needed. 

We are forever grateful to every doctor and surgeon that we have crossed paths with, as they are the reason we are where we are today. We are grateful for medical and science advances that have progressed to the point this trial could not only extend James’ life, but also the ever growing number of Appendix Cancer patients. 

We are forever grateful for everyday that we are still on this side of heaven with James. 

Hug your loved ones, tell them how you feel because, as the Richter’s know, life comes at you fast and can change in a blink of an eye. 

Day 99

Look at my handsome, fierce fighter, cool as a cucumber husband. He takes this cancer thing and its treatment in stride. He is never down, never complains. Today was no different than the 99 days before. James had blood work, a doctors visit and then his infusion. It seems as though all his numbers are sufficient, although his CK level remains high. 
Given he is not having muscular pain, they remain unconcerned and treatment went on as planned. He will continue on the lower dose of chemo and will again have bloodwork next week to continue to monitor his levels. 

His next set of appointments are January 3-4 and will consist of an echocardiogram, ophthalmology appointment, labs and treatment. He will have a busy 2 days which will hopefully reveal a stable scan or some reduction in disease, a strong heart and healthy eyes. 

Today, I find myself singing 99 bottles of beer on the wall and wish this milestone – for lack of a better term – was actually the beginning of a countdown to completion of this treatment versus the beginning of what could be another 99 days. 

This holiday season, I wish for our family to have normalcy and healing. This version of normal has become quite old and exhausting. I wish for a cure, treatment that could be had closer to home and just peace for the other families who spend every day fighting Appendix Cancer or missing a loved one whom they have lost. Perhaps some day, my Christmas wish will come true. 

We wish you all a Happy and Healthy Christmas and a wonderful New Year. xo

Keep on Keepin’ on…

We are 3.5 months into this trial and things seem to be going well. James feels good on most days, just a little fatigue and upset stomach the day after his immunotherapy infusion. He has been breaking out from the chemo a bit more recently, but it’s nothing he can’t handle. 

He will have his end of the 4th cycle scan on 1/3/18. If we base it on the scans PRIOR to the trial starting, which were every 4-5 months, we would expect some minimal growth on this scan, as all previous scans have shown some growth along with an increase in his tumor markers. 

However, those tumor markers are falling so we are hopeful this scan will show no growth or even better a decrease in the size of the existing tumors. 

We have made a decision to do everything we can to not leave Minnesota, even though this treatment will continue as long as there is no progression. This decision was made for lots of reasons, but mainly financial. We can’t afford for James to quit his job and expect him to find another in Texas that would be so accommodating to his need for a day or two off every other week. His current employer is being absolutely AMAZING!! So we are going to try to make the commuting life work. 

Please pray for us and that this is the right decision. It seems to be at the moment. 

Financially, this will be tough so we still have a GoFundMe and will be planning a fundraiser in April or May, up here in MN. So please pray He continues to provide for us too. 🤗

He will have his CPK checked at home, on Tuesday, and then back to Houston on the 18th. Prayers are always appreciated!! 

P.s – please remember you can sign up for emails to be notified when I update this blog or feel free to join his Team James Facebook page or the @MNTeamJames Twitter page. 

Week 120, oh I mean 12

All is good with Mr. Richter today. His CPK levels continue to trend down, but not enough to avoid a blood draw next week to check it. His magnesium level was up, which was good. So he was cleared for his infusion.

James has had some gastrointestinal issues the past few weeks, just heartburn and some stomach upset, so they prescribed Nexium. We will see if he takes it or continues with his Apple Cider vinegar.

He did hit the doctor up on some of the questions we had and he was told that it could take up to 5 years for FDA approval of this treatment regimen. So the answer to duration was “you will receive this treatment as long as it is working.” So there you have it…

Prayer requests for going into week 13 and 14:

1) numbers continue to trend down                                         2) GI issues resolve                                                                                                       3) Our insurance company reverses their denial of some of James’ tests (which are part of the trial they approved) as unrelated.                                  4) Our minions…