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? 😂

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. 

The Exception, Not the Rule (Day 42 part Deux)

Nearly 7 years ago, we were told by James’ first surgeon “that being cancer free or NED (no evidence of disease) was the exception and not the norm.” I have always thought my husband was extraordinary and exceptional and today he proved that being a run of the mill, ordinary patient is over rated! 😂  

I have always thought and continue to think my husband will ultimately be the exception. It’s just taking some time! 😉

Today has been one confusing day. But here is the man of the hour on day 42, infusion numero cuatro! 

Ok, so James’ CPK was 1000 and there was no change in his urinalysis from 2 weeks ago (which is different than what he told me 3 hours ago but that’s what I get for staying home) so they decided to forge ahead with treatment today and monitor him. YAY!! 

I’m sorry but the thought of his dosage being decreased or him being dropped from this trial sends me into a dither. Oy vey!! 

So here is the plan, signed, sealed and delivered

  • get blood work done in MN next week to see if there is any change in his numbers. Lord, let there be a DECREASE in the CPK! 
  • If he has any sign of pain (ie: lower back pain) he is to call and stop taking his chemo immediately. It is the side effect of the chemo that is causing these numbers to elevate but typically patients numbers decrease after a few weeks. 
  • Return in two weeks (end of cycle 2) for more labs and the lovely CT scan!! 

So updated prayer requests – sorry, I am high maintenance today. 

  1. Lower CPK numbers!! HUGE! Most important! 
  2. No back or other muscular pain
  3. Steady, regular heart beats and blood pressure
  4. A scan that shows NO growth
  5. Lower or sustained CA19 levels (not sure if this was checked today and James said the doctor did not mention)

Thanks mi familia for walking this walk with us! 💛

No ordinary man – Day 42

Day 42 has not gone as smoothly as we would have liked. But you gotta take the good with the not ideal, I suppose. 

James traveled to Houston alone this time, so the kids could have some normalcy. It’s good for the kids, likely good for James and kind of heart wrenching for me, as I haven’t missed appointment with him, in nearly 7 years. 

To top it off, his CPK levels were super duper high today. For the past month they have been 470ish (130’s is normal). But my husband is far from normal or ordinary and today those numbers jumped to around 1000. I don’t have an exact number because I am getting my information second hand. 

Just a little side note – High CPK levels in the blood mean there is likely some muscle damage, which is releasing creatine into the blood stream. This isn’t a good thing. James hasn’t done any strenuous exercising, had a heart attack or suffered an injury that would cause these numbers to increase; therefore, the chemo (Cobimetinib) is likely the culprit.  

As a result of the high CPK level he was not immediately cleared for his infusion until a urinalysis was completed. 

The good news with this “bad” (not ideal) development is that James feels good. His blood pressure is good, he isn’t having any pain or weakness. 

The Urinalysis has been returned and his protein levels were a bit elevated and James understood that he was not having treatment today so he headed to Kenny and Ziggy’s for lunch. 18 minutes into his 22 minute drive, the clinic called him to see where he was. After clarifying with Dr. R, James is to have his infusion today and continue the cobimetinib. 

So, “now what” you ask? 

1) He is suppose to continue the Cobimetinib and have blood work, in MN, next week to check his levels and we will go from there. It appears the plan is to continue as is because he does not have any significant daily symptoms of pain or weakness nor is he having any heart issues. 

3) If he has any muscular pain, he is suppose to call Dr. Raghav and discontinue his cobimetinib immediately. 

So prayer request (because I always have them) – please pray for his numbers to go down, substantially! Also, that he continues to be symptom free, in regard to muscle pain, weakness, blood pressure. 

4) I will add his day 42 picture as soon as he sends me a selfie!! 😊

Thank you for your prayers and support! 💛

Fundraiser 

My best girl all the way back from High School has her own business with LuLaRoe. She and a few of her peers have put together a little fundraiser for James to help fund his travel back and forth to Houston every other week. 

This is a fun little fundraiser as you can shop from your computer. The link to the items available can be found here! I personally have never bought LuLaRoe but my mom and sister in law have and they say they are fabulous! 

So, if you are in need of a super cute, comfy dress or some leggings or other items, take a peek! Ginger is available if you have questions. 

Also, LuLaRoe matches dollar for dollar all funds raised after a goal is met. What a fabulous company! 

James, the kids and I honestly do appreciate all of you for your support, whether it’s been financial, mowing our lawn, watching our minions, bringing us food and most importantly, your prayers and good thoughts. 

We honestly could not walk this journey without each and every one of you! 🎗💛

Day 28 – Cycle 2


James has made it through his first cycle! Cycle 2 will also last 28 days. At the end of this cycle he will have a CT Scan to see if this is showing any sign of working. When he comes for his scan the first week of November, his labs will also include his tumor markers, specifically the CA19-9, which was high when last checked. 

Today’s labs were all good, except his CPK. This is the test that monitors whether his muscles are being attacked. You may recall that two weeks ago, his CPK doubled. Today, the number remains the same; however, they would have expected it to decrease. Of course, James has to be different. 

However, it is not high enough to change the dosage of his cobimetinib (chemo)….yet.  If it remains high next time, they may need to adjust the chemo dosage. In the meantime, we will monitor his creatine intake and keep our fingers crossed for next time. Luckily, he does not have signs of muscle breakdown, such as pain, so that’s a plus. 

Oh, his echocardiogram and his ophthalmology appointment were both good too. So far no damage to his heart or his eyes. 

This was his off week from chemo so he has felt really good. Minimal fatigue and a healthy appetite. He gained a pound this past two weeks, which would not be a surprise if you saw his dinner and dessert the other night. 

They are starting to get results from others but can’t share them because it’s a trial and I have yet to have anyone respond to me who is on this trial to see how they are feeling, etc… 

So here he is… day 28, infusion 3, the beginning of cycle 2. 

Of course, I have specific prayer requests… (thank you for humoring me) 

1) James really needs this CPK number to decrease. If it decreases, he can continue on the current dosage of chemo, which is recommended for this trial. So pray for some muscle sparing the next two weeks and going forward. 

2) That his minimal rash goes away. You wouldn’t notice it but he can feel it. 

3) I know it is 28 days away, but that his tumor markers decrease and his scan remains stable or shows a change (preferably reduction in tumor size not increase) 

4) Finally, prayers for the other 19 people on this trial and that it is working for them. It would be lovely if they all had good results so this could become an active, reasonable treatment for PMP patients. Maybe then, James could get it at home, as traveling here takes it toll on all of us. 

As always, thank you for your support! 🎗

Day 15

Here we are, Day 15, and Superman, well mine anyway, is at it again. Today has been a full day of lab work, doctors appointments and now the lovely “immune booster” infusion! In between, we were able to meet the lovely Neva (also an Appendix Cancer survivor) and Lyman Bone and Peter (who is a Stage 4 Colon Cancer survivor) and Lisa Sharbo, who just happen to reside in the frozen tundra with us. They both are true inspirations and represent that MIRACLES DO HAPPEN! 

Lab work was good. Specifically, while on this trial, they are watching his CK, kidney and liver levels. This drug is known, in about 5% of patients to attack healthy muscle and organs. James’ liver enzymes were up 3 points, which is no big deal and his CK levels increased, about double, but within the limits that are acceptable. As a result, he was ok’d for the infusion cocktail.

We did find out today that all 20 Appendix Cancer spots, in this trial, have been filled. The doctor told us it was closed and it took 4 months to fill. Hopefully between the 20 of these warriors, a treatment for all patients can be found! Wouldn’t that be AMAZING?

Here we sit and James is, again, tolerating it well.

What’s next… you ask? That’s a mighty fine question.

He has one more week of chemo pills before the standard one week off.  Then on October 9th, we are back down here to celebrate the completion of the 2nd cycle with another biopsy, echocardiogram, ophthalmology, lab work and infusion 3.

He will then be done with biopsies until he is done with the trial and echocardiograms and ophthalmology will move to the end of every third cycle and scans after every 4th cycle. Each cycle is 2 weeks. Confused? Yeah, us too! 😉

This is slightly different to what we thought but  as James always says, we will “adapt and overcome”!

As I write this, he has just finished up. Apparently, they speed up the infusion after the first one to 30 minutes instead of an hour.

Thanks for your continued prayers and support! We need it and appreciate it! 🎗

Prayers 

Prayers please… we have two friends who are in similar situations as James. One has a recurrence after a 12/2016 surgery and is a mom of adult children and a grandma and the other is a dad of two teenage girls and has residual tumors in similar places as James. Surgery isn’t an option for either at the moment. Both are at MDA over the next 4 days to discuss treatment and clinical trials! 

When in this stage of cancer, you want easy answers and treatment options. Answers are not easy to come by with Appendix Cancer and the mucinous goo it leaves behind. Treatment options are sometimes even harder.

The only known effective treatment is surgery with HIPEC. So when that is not option, you keep looking. 

At this time, trials seem to be the best option. The scariest option as it costs a small fortune, uproots you from your life and may or may not work. However, the “what if’s” would be worse to live with. Who knows if the trial will work or if the other trial would have been better? It’s a crap shoot and honestly, I’ve never been a great gambler. 

So pray for these two families. Pray for wisdom in their decision making and that they receive just a small glimpse of hope and are offered a trial. 

Day 6

Day 6 of chemo – not sure what any of us think of it, but we are grateful that James seems to be tolerating it well. Apart from remembering not to share drinks or other little things, I think we have all managed ok.

So far the only noticeable side effect is fatigue. His energy level seems to come and go but he claims it is nothing he can not tolerate. He has had a few other minor things, but they seem to be improving. As of today, no terrible rash, but being me, I have him using cleansers, creams and lotions!

He was over joyed today when Carlie asked him to go fishing. He quickly plugged in the boat, let her finish her homework and off they went. Normalcy can be a good thing and our home has been anything but normal over the past several weeks. But this week can be normal, both parents home, meals are prepped and nothing out of the ordinary is scheduled. Next week, that all changes… But that will be our new normal.

I want to thank you all for praying for James. Holy mackerel, we have all needed them these past 6 days. You know it is needed when even Luke tells you he “is nervous for his dad.”

Thank you for those who talked me off ledges this week and for those that have checked in on James. Your support means more than we will ever be able to tell you. Special thanks to both of our employers who are being extremely understanding and working with us on our new crazy schedule.

I don’t have a day 6 picture of James, but you will get a Day 15 next Tuesday when he is scheduled to be in Houston for his second infusion. So I picked this one. I think this was this Spring on Mille Lacs (James’ happy place). 

IMG_8855

I also want to thank the Thiede’s who God has blessed us with! Not only are they totally cool (They have Prince on vinyl and LOVE Chicago sports) but they are kind and have opened their home up to strangers. As a result, we don’t have to worry about housing/hotel while in Houston. This is HUGE and saying “Thank You” doesn’t seem adequate.  We are beyond blessed to call them friends. Keep them in your prayers too, as Kathleen also battles the PMP beast.

Also, for next week, thank you to the Tatro’s. They are opening their home to our minions, while we are in Houston. Adding our two to their three is a big sacrifice, especially on a school night. We love you all very much.  Also, thank you to Mary and Dain for taking Finley — I am not sure what we would do with out you!

Have a great week and love one another! 🙂

Hurry…. and wait!

We have learned after 2.5 years at MDA, things don’t typically move quickly, but on a day in which you haven’t eaten in nearly 17 hours and are anxious about the upcoming test for which you are fasting plus the reality that the unknown really begins tomorrow, sitting and waiting 2 hours after your scheduled appointment can have its toll on your already fragile state of mind.

I can complain (a little) as I have also not eaten or had anything to drink since 11pm last night because I didn’t have the heart to do either in front of James or even have the heart to sneak out of the room to grab something. Some people might be surprised by my surprise fasting, who knew I had such a compassionate side. Certainly not me!

This has been a good week but a long week. James’ tests all went as planned last week. His eye exam was perfect and his labs and echocardiogram were good too. Shoot! Today his blood pressure was so dang normal I almost had the nurse take it twice.  When I say normal, I mean like really normal, like it has never been this normal before.

Today is biopsy day. James was anxious about it as he is not a fan of needles and the thought of it was making him a bit antsy. When the nurse verified his information, he asked James, “can you please confirm the procedure today?” James’ response was – “You are going to core me like a tuna”. It was a light hearted moment in an otherwise stressful day. After that, they wheeled him a way into never never land in hopes of finding a cluster of cancer cells to collect for research.

Some of the anticipation is tomorrow too – Infusion Day. Honestly, we don’t have a clue what to expect. There are people on this trial and I have tried to find them and no one is responding. It would be HUGE if we could find a group that was going through the same crap, oh I mean treatment, as us. What kind of side effects, what kind of results, what are you doing to help side effects or prevent them!

So pray for James as we enter never never land again tomorrow and he begins his infusion of immunotherapy and a dang chemo pill (My hubby has never been on traditional chemo!)

Pray his side effects are minimal and controllable. Pray things just don’t change too much, except for this stupid PMP to be gone!