Tired

I won’t lie, I’m tired. James’ appointments are always emotionally taxing. You just never know what you are going to hear and yesterday was a marathon of appointments which adds to it.

Carlie is currently in surgery for what will hopefully be her last for a very long time. In her 15.5 years of life, she has had so many surgeries. 2 to her hip, a hernia repair and now her 3rd knee procedure. She needs a break and very little drama during recovery.

I never worried about post op infections before. James and her have both done well after surgery. But this last surgery of James’ has thrown me for a loop. It can happen to anyone, even when you do everything right. I pray she doesn’t have any post operative issues. Smooth sailing would be appreciated.

I am tired. We all are tired. November 26th (James’ surgery date) seems like years ago not a mere 6 weeks. Carlie has been limping and living with constant pain for nearly year. It has sidelined her from things she loves. I’m over it.

We have had tons of support and lots of love over the past 6 weeks. We so appreciate it. Really we do! But I am aching for silence. Quiet. I’m aching for a healthy husband and a pain free Carlie. I’m aching for Luke to succeed in school and a full night of sleep, without interruption. I’m aching to visit my nieces and nephew (who I still haven’t met). I’m aching for time to be something other than a caregiver and employee.

Don’t get me wrong, I would do it all over and I will continue to do it, I am just tired.

We have been immensely blessed with great physicians, strong medications, a working car to get us back and forth to Rochester for what seems like weekly or daily visits. We have a huge network of prayer warriors and a group who have helped with the simple things, like meals, gift cards, stopping what they are doing to help us in a pinch.

We are blessed but we are tired. So let today be the beginning of the end of our frequent visits to Mayo Clinic! 🧡

Deja Vu

This is all like deja vu. I have been here before. Carlie and Luke have been here before. James has most definitely been here before. There are a lot of emotions as we enter this week before James’ next surgery.

There has been fear, sadness and anger as surgery draws near. Some more extreme than the others. I found it odd telling our 15 and 12 year old today that they were strong. That they handle their dads cancer with strength and dignity. It’s weird to tell them that. It is weird that they have been dealing with this for nearly 8 years. It is weird that people don’t think to ask them how they are because most don’t think of their dad being sick. This whole surgery thing sad. It’s maddening. But James, Carlie and especially Luke continue to inspire me daily.

There really is only one fear as we head into this surgery.. scar tissue. I have told James repeatedly that the second they tell me they are through the scar tissue, 99% of my fears will disappear and I will likely relax. The story is much different if they can not get through it. So, I anticipate within 4-6 hours they will tell me they successfully maneuvered through the scar tissue that has built up from 3 prior surgeries and I will breathe a sigh of relief. I believe this will be his next chapter. I can not think of the alternative as it will drive me crazy.

Although we have been through this before and we are quite blessed that they will even try a 3rd surgery (some PMP patients can’t even have a complete first or second), the unease of being away from our kids for 7-10 days and the recovery is daunting. Needed and necessary but daunting.

I am thankful for James’ work. They have gone above and beyond and truly are our family. They have provided much needed support, especially as we head into the holidays and the unknown. I am thankful to those of you who have supported us once again financially. None of this is easy but your gifts have given us tremendous peace of mind as time is taken off work and pay checks are reduced. I am thankful for those of you who simply pray and send us happy thoughts. I believe prayer has gotten us to this nearly 8th anniversary of his diagnosis and has been the reason James has been blessed with good health and minimal complications or symptoms. I believe prayer is the reason, he has lived a completely normal life while living with this cancer. I believe prayer is the reason that people who do not know us, have no idea he is sick. I believe prayer has given our kids a way to handle this.

I won’t lie. The thought of our lives changing scares me, but I am choosing to believe that James’ story is not done yet. I believe he has several chapters left and this surgery will hopefully make the ending that much further away.

So, please continue to remember my sweet husband and our children over the next few weeks. Life will be crazy for them with recovery and our norms disrupted and then a whole new set of disruptions beginning 12/27 with Carlie’s surgery. The Lord has gotten us this far and we are just letting his keep the wheel, as we are not able to maneuver this on our own.

Surgery – Take 3

As most of you know, James is headed in for cytoreduction number 3. This will take place on 11/26 at Mayo Clinic.

James’ scan continue to show slight growth in his existing tumors BUT a tumor near his colon and rectum is compressing that area and could lead to potential issues if not taken care of.

Scar tissue is a concern given this is his fourth abdominal surgery, overall. As long as they can get through the scar tissue safely, they will try to remove everything they can see and if possible proceed with the heated chemo.

Without this surgery, his life expectancy would significant be reduced.

He will miss 6-8 weeks from work and will likely have some life style changes.

We remain hopeful that this surgery will extend his life even longer. It is a big surgery and a big deal. Your prayers for James and our kids is greatly appreciated.

Watch and wait…

Watch and wait….

This is where we are now and we are ok with that. James is officially out of the trial as his scan indicated minimal growth but his tumor markers jumped 300 points. He is still within the percentage to remain in the trial but the doctor indicated the treatment has likely stopped working. Given it is growing “slowly” and James is tired of feeling blah, we agreed to stop.

He is not likely a surgical candidate, at this time, given the location of his tumors and the fact he has no symptoms but Dr. Raghav is referring his case back to Dr. Fournier for further recommendations, which could include Chemotherapy – which is not terribly effective against this slimy beast. I would not anticipate surgery until he starts to have symptoms.

So now we are back to watch and wait. Wait for what, I am not sure. Surgery, some miracle, some medical break through…..

This is not the end of James’ story – just another chapter! 🙂

Today

Yesterday, I took to Facebook to update those who care about James and managed to make the post more about venting than anything. Please know that neither of us are scared or sad. Yesterday, I was just pissed! Angry! Frustrated that 7.5 years later and it feels like the treatment hasn’t changed!

Today is a new day. Thank goodness we are always given a fresh start when the clock strikes midnight. Imagine how heavy the burdens of yesterday would be if we continued to carry them into today.

The trial was working for James at one point and now it’s not. That’s no ones fault. It’s this crazy, standing still, reeking havoc, gooey cancers fault.

The most likely reason for the treatment to make such a negative turn around is likely because James can not tolerate 60mg of his chemotherapy. It destroys his muscles, which includes his heart. I’m sorry, but we want James here as long as possible and neither of us are willing to take the chance of the chemo causing him to have a heart attack.

So this is where we are TODAY. James will continue to press ahead until his next scan on June 20th. We will then reconvene with our beloved Dr. Fournier and see what he thinks James should do going forward. We trust him and his opinion and know that he has James’ best interest, and that of our family, at heart.

We will then decided how to proceed. Just because James was in this trial does not preclude him from being in other trials, which is a good thing and this was confirmed yesterday by Dr. Raghav. He may switch back to “watch and wait” and scans every 4 months until the tumors start to give him symptoms that would warrant another surgery. At this point, we don’t have any answers.

I am also looking into options for his records to be reviewed by a University of Chicago physician, who I am told is making some incredible strides. I am also considering reaching back out to Mayo to see what they have cooking since they now have a doctor who knows this cancer and its treatment.

But that is for another day.

Today, James has no symptoms other than some minimal fatigue. He has no pain, discomfort, trouble eating, drinking or sleeping. Today, he is healthy and you wouldn’t know he had cancer if I didn’t spew it all over Facebook.

So we focus on today and leave yesterday in the rear view mirror.

8 months (not sure of the cycle)

On Facebook this week I said today would be a crossroad for us. I have learned over the past 7.5 years that I am very rarely ever right. Today proved to be no exception.

James called me from Houston so I could be part of his appointment. Thank goodness for technology.

He continues to have no symptoms with the chemo medication, BUT his CK level continues to rise. Still significantly lower than when he was on 40mg or 60mg but higher than the norm.

The scan was okay. Just makes decisions a tad more difficult. When he started the trial in August, his lesions were 7.8 cm combined. His last scan, 8 weeks ago, they were 8.7 cm. Today they measured 8.7-8.8 cm. So overall, all his tumors have only grown 1 cm over the course of the last 8 months. Today there was little to no growth. So…. YAY! Because, if nothing else, this trial/protocol has potentially slowed the growth, as prior trial scans showed his lesions were growing a good .5-1 cm per month.

Dr. Raghav said he can not definitely say whether the protocol is causing the slow down or if it is simply the nature of the disease. So, since there is no growth of existing tumors and no new lesions that are seen, Dr. Raghav recommend that James continue with the protocol.

James and I agreed that is what he will do. So 8 more weeks it is.

James called me afterward and told me that if there is no change and/or growth in 8 weeks, he will be discharged from the trial.

So, your continued prayers and support is appreciated. Just a reminder, a benefit will be held for him on 5/19, 2-6pm at the Elk River AMERICAN Legion. Feel free to share, donate items for auction, come and eat tacos or have a beer with me (James doesn’t drink!).

Month 7

I haven’t been very vocal on here lately as there hasn’t been much news to share. James is currently attending his 7 month appointment and his heart and eyes checked out just fine.

In regard to his labs, he remains somewhat stable. His numbers are creeping up slowly. His CPK was up about 20 points and his tumor marker was again up about 24 points.

The bad news… his numbers have stopped dropping and are moving in the wrong direction.

The good news… his numbers are creeping upward and not sprinting, like they were before the trial started. Before the trial, his tumor markers would jump about 100 points each visit.

He will start his next cycle and have a follow up on 4/10, which will just be labs and treatment.

Then the end of the cycle appointment will be 4/25-4/26, at which time he will have labs and a scan.

My heart is heavy but neither of us, especially James, will stop fighting. What’s important is that James feels good and his otherwise healthy. For that, I continue to be extremely thankful.

Thank you for your ongoing support and prayers. Thank you to Ryan and Steph for the flight this trip and thank you to Mercy Medical Angels for the flight in 2 weeks.

💜Here’s a picture of James, in college, circa 1994 or 1995 (courtesy of KV or as my kids call him Uncle Kevin) 💜

6 months

Today was James’ 6 month scan. It wasn’t ideal. There was some growth on the tumor near his bladder and his tumor markers increased slightly. There was no change to the other known tumors and nothing new.

Gotta take the good with the bad or not ideal. Of course we are disappointed but as James likes to say, it is what it is.

He will remain in the trial for at least 8 more weeks. This will allow us to determine if the growth is a result of his tumors not responding or perhaps because he was off chemo for nearly a month last month due to high CK levels.

Time will tell. Thank you for your thoughts and prayers.

5.5 months

James’ appointment was uneventful today. He is tolerating the chemo much better at the lower dose. Therefore, he will stay at the 20mg per day, at least until his next appointment.

His next set of appointments will be February 28 and March 1st. At this time, he will have his normal blood work and his 6 month CT scan.

🎗🎗One last thing, our friends are planning a benefit for May 19th. If you’d like to help or donate, please email Karen Stelk at kstelk02@gmail.com

Thanks! Feel free to share on your social media to spread the word.