Ain’t no sunshine…

So, I am sitting on my deck, during my never taken lunch break, hoping the sun hitting my face will make me feel better. Normally, quiet time, in the sun, helps lift my spirits.

As I sit out here, the sun is warm and the air is perfect. Finley is being lazy chewing on a bone or a stick and I am trying to turn off the negativity that is running the show today. Too bad the neighbor is cutting down trees or something that is loud and disturbing my inner search for peace! Ever  just want to scream? Yeah, that’s me today, but this particular neighbor likely wouldn’t take that to kindly, so I sit here irritated that they are being so dang loud! I wish I lived on 10 acres with no neighbors!

Things I have done today, all of which have resulted in crappy results, so I am feeling a bit like a failure, which is never a good thing!

1) Called United and tried to request, beg, demand that they wave the fee for needing to change James’ flight in two weeks! See MD Anderson informed us Tuesday that James needs a biopsy at his next appointment so it will be a two day appointment! That is not on his scheduled appointment list so we had planned on him going alone, get his infusion and coming home all within 24 hours! But NO!! Now I have to pay 200 bucks to change the flight to depart on Sunday plus the extra 137 bucks for the flight difference!

2) I called our insurance company, as some policies will reimburse you for your travel and lodging if you are in a trial. Guess what? Not ours!

3) I finally cancelled our vacation to Florida that was scheduled over Thanksgiving week. We knew this was needed, but I procrastinated and reality slapped me in the face today. Our kids are disappointed and shed a few tears, but heart wrenching for me as we have never taken them anywhere south of Illinois. Never to the beach or someplace warm – during the winter months.

So today kind of sucks! Cancer sucks! I have reached my 3 strikes for the day and can only hope there are no other strikes to come. Participating in a trial or receiving medical care, to save a life, SHOULD NOT bankrupt a family!

So, the sweet sun ☀️ likely would have improved my mood, if it wasn’t so dang noisy outside AND I could just sit here for the rest of the afternoon, but work is calling, so 15 minutes is all I have to spare. It feels dark and lonely today.

So, my advice to you… take it as you will. Enjoy every moment, every vacation you are blessed to take, every dinner you eat with your spouse or kids, every moment in the sun! Because in a moment, it could change and it could all be gone or look drastically different!

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). 

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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! 🙂

Day One

Today is day one of James’ journey with a clinical trial. Every appointment, blood draw, poke and stick that has led to this day has been in preparation for not part of. 

However, at 4:05pm on 9/12/17, James started his very first infusion of a drug (Atezolizumab) that we hope boosts his immune system to recognize that those stupid mucin cells are bad, very bad and start to fight them! 

It is also Day 1 of chemotherapy. James has never had Chemo outside of HIPEC, during his surgery. Today he begins cycle 1 (21 days) of cobimentinib. 

Can I just tell you how much I hate this! I often wish I could trade places with him. However, I am so grateful for his courage to try this and step into the unknown just in hopes that it may extend his life or that of someone else!! He is my hero!! 

One other bit of news, his genetic testing came back (you remember that genetic testing that I have begged for for years). James has the KRAS mutation (not KRAS Wild). What does this mean? They know for sure what Chemo drugs would not work for him BUT in other clinical studies (colon cancer specifically) they have seen good results with people on cobimentinib and that have the KRAS mutation. Apparently, cobimentinib blocks the KRAS mutation! 

We are 30 minutes in and James is doing great! His spirits are up, he is not having any issues and his stinking blood pressure is 114/65!! I tell you, this man is as healthy as a horse if it weren’t for PMP! 

So.. prayer warriors! Get to it!! 🎗💛

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!

Friends in Low Places

I saw a very excited husband tonight when he received his confirmation voice mail for his upcoming appointments. Some of our PMP friends have not been so lucky and have had their appointments cancelled and rescheduled as a result of Harvey and were scheduled the day before us. Even though I received the go ahead on Friday and an email yesterday, he was still excited.

Anyway, this is a thankful post. James and I have had many people come and go into our lives as we have ventured on this journey. It has not always been easy to like us. We have had ups and downs throughout this nearly 7 year walk of uncertainty. Emotions have been unpredictable, sometimes good but mostly not so much.

But this group, right here (below) have been with us every step of the way. It always seems before any big medical event, we spend an evening with them and just have fun, laugh and some of us drink (while James acts as our sober cab). This upcoming trip to Houston is no different! We spent Friday night with them in doing our traditional Nordeast tour.

While we see them throughout the year, they always seem to be the ones that send us off to the unknown (and probably don’t even realize it), feeling a bit more loved. We are eternally grateful to this group of friends. (These pictures represent three separate outings over the past 2 years, before a trip to Houston)

In addition, to Jeff, Tracey, Mary and Dain – we have been blessed to have Mark, Melissa & Mike, Michael & Julie and Karen (I couldn’t find any pictures to post of them) weather the storm with us, since the beginning.  They are what we call our “MN family”. They have been here in our lowest moments and for that we are eternally grateful! 

We are also very thankful to those who have joined the ride and continue to ride it with us!

James and I have always said we are stronger together but this group definitely contribute to our strength and bring us a whole lot of joy.

Forward March 

We received word today that we have not been cancelled from our flight, our hotel was upgraded to a suite and our appointments are still scheduled barring any further issues with Mother Nature. I do hear Irma is on her way to the gulf, so I hope she loses strength and dissipates before she reaches any land. 

So, James’ appointments are still scheduled for next Friday, Monday and Tuesday with our travel dates on the 7th and 13th. 

Given this, we have a full weekend planned with the kids as we are not sure what the medication will bring (as far as side effects). Our plans are the MN State Fair with one of our favorite families, church, a cook out and maybe some fishing ( 🎣 which is really all James is interested in) and then my momma coming in on Wednesday. 

Tuesday is also a big day as the kids start school. Carlie a Freshman 😩 and Luke is the king of the school as a 5th grader. 

So please pray for James and our travel and most importantly his treatment and tests. I pray he passes with flying colors with little to no side effects. And for the minions as they start, what we hope, is an exciting, fun and successful school year. 

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