Have truer words ever been spoken?!
This post comes from Houston, TX! I’m on the road again to visit my team at our Houston office. I expect to put in some long hours the next few days to help get us ready for our next release. Looking forward to seeing the team again!
The awesome thing about this trip is that I left the day my pump was disconnected, instead of waiting until the next week. If this works out, it’ll set a new precedent for sure. I’m feeling great, no doubt in part to the lack of Oxaliplatin in this treatment. But I love not having any neuropathy to deal with. I’ve also started taking Glutamine, a naturally occurring amino acid, to help prevent/mitigate the neuropathy. There’s some promising studies about the subject.
Speaking of the pump, here’s what it looks like:
I wear that puppy in a stylish fanny pack with a razor thin, super uncomfortable waist belt for 46 hours. Every couple minutes it makes a mechanical sound as it sends more 5-FU into my body. Fortunately I can’t hear it at night when it’s under the covers with me. It’s kinda a nuisance, but I only have to wear it nine more times! In this case, I’ve literally got this chemo thing #InTheBag!
Here’s a shot of the Texas landscape we flew over. All those dots that are kinda hard to see are oil wells. There must be hundreds of thousands of them in Texas, as they went on for miles and miles and miles!
Finally, a shot of the Tucson International Airport control tower. Normally I’m all #nofilter with my images, but I was bored on the plane, and I wanted to highlight the age and iconic nature of this structure.
I hope everybody is having an amazing week! Only a couple more days until the weekend (which I’ll be working through!). Have a great day!
Met with my surgeon this morning to check on the progress of my wound healing, and she had a big smile on her face when I pulled back the dressing! She’s very happy with the way things are looking. She gave me another Kenalog shot (a nice steroid), pronounced I was fit for travel, and sent me on my way, to come back in two weeks.
I, of course, took a picture of the wound and showed it to my WOC nurse, Louann, when I went to pick up supplies. Another great reaction from her! So, things are progressing well.
I have to believe this was all God’s doing. He had the wound break at the perfect time (not on a a plane), lined up some great caregivers along the way, provided serious inspiration to the WOC nurse for dealing with it, and even removed the nasty Oxaliplatin from my chemo before I head to Houston, leaving me neuropathy free during my trip. All in all everything has fallen into place quite nicely!
Off to Houston tomorrow, coming back next Tuesday. Looking forward to being with the team and getting some serious work done, but will miss home for sure. Hope to get some good pictures while I’m away.
Have a good day!
Today starts my third chemo treatment, and the first Link of Hope from the amazing Vonk family! The verse they chose to kick things off was Deuteronomy 3:16, which says:
6 Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you.”
Perfect verse! I know for sure that God has been with me every single step of this process, and it’s what’s supported me and helped keep my positive attitude. Thanks, Vonks, for reminding us how God can help with our walk, and knowing that he’ll always be there for us! And isn’t that the absolute cutest writing on the link?! Thanks, Benjamin!
And thank you to Hannah Mason for bringing me a Boba Tea! I can enjoy it even more now that I don’t have to worry about the neuropathy.
So, today’s chemo visit will be bit different. Here’s the blow-by-blow:
11:45AM : Done! Got my pump connected and am out the door! Today was the easiest one so far! Of course it helps I didn’t have the Oxaliplatin , which I don’t mind, since it also means I won’t have do deal with neuropathy this time. And while they’ll want to get me back on it sooner than later, it won’t hurt the overall efficacy of my treatment. Praise God!
9:50AM : Started the 90 minutes of Leucovorin.
9:30AM : Got hooked up to the IV. Today will be a much shorter session. Since there is no Oxaliplatin, there are also no pre-meds. It’s basically a Sodium Chloride IV for a bit, Leucovorin for 90 minutes, a 5-FU push, and then I get hooked up to the pump! It’ll save me a couple hours for sure. And, no chance of neuropathy to increase, because I won’t have the drug coursing through my veins.
8:45AMish : Met with Karen, who is Dr. Rosenberg’s PA. Talked with her for a long time, which is one of the things I like about this place. They’re never rushed, and always have time to answer every question you have. We talked about my recent wound, which my surgeon believes is pyoderma (related to my old ulcerative colitis). Because it’s so nasty, and because they want to give it the best chance to heal, we’re off the hthis time! This is “good,” because it’s the nastiest of the drugs, and it’s the one that causes the neuropathy. However, it’s also very effective at what it does, so we don’t want to stay off it too long. But, it’ll give my body a break and a better chance for my wound to heal. And, ultimately, many (close to most) patients end up on a reduced level of Oxaliplatin during the course of their treatment because of the side effects. We also discussed the use of Glutamine to help prevent the effects of neuropathy. She said they’ve done studies with it, and not found it to be all that effective, but that it wouldn’t hurt anything if I tried it. I found this study that suggests it does work, and since it’s an essential amino acid, I’m gonna give it a go anyway. I’m sure it’ll help something!
8:15AM : Got my vitals taken, got my port tapped and my blood drawn.
8:00AM : Arrived, checked in. Way too early in my book!
Today Michelle and I visited our favorite Wound/Ostomy Care nurse, Louann, to figure out a better way to deal with my sore, which is basically a skin ulcer, and my ostomy bag. Our original solution wasn’t working…the ostomy appliance was pulling up on the covering over the wound, causing it to leak. I wasn’t supposed to see Louann until next week, but I called and we were able to come in today. Three medical appointments in one week!
When we got there, Louann had already come up with a plan. I was so appreciative of the fact that, over a period of 48 hours, she gave some thought to my situation and actively tried to figure out a solution!
What we ended up doing was pretty creative, and just plain feels right. We started by covering the wound with a piece of Mepilex Border Sacrum, which is a cute, heart-shaped piece of absorbent material used to cover wounds. Even the adhesive is super friendly…it’s often used in neonatal situations. Because the piece is so big, we had to cut an opening for my stoma. So, think of it as a heart with a hole in the upper-right corner.
After we stuffed the wound full of AquaCel Dressing, which hurts to do, but not as much as earlier in the week, we applied the Mepilex. Then, through the hole, we attached a moldable ring around my stoma to bring an attachment point up to the height of the dressing. After that, we added a convex wafer for added flexibility, snapped on a bag, and, things were #InTheBag! Overall the entire getup is pretty comfortable, I don’t feel like I’m risking leaking out of or into the wound, and I’m feeling good!
Louann sent us home with enough supplies for a week, and told me to give her a call after my appointment with Dr. Schluender next Tuesday to see if I need anymore supplies for my trip to Houston. Louann is simply awesome (though a bit feisty and likes to mess with me)!
I continue to be amazed and so blessed by the people we meet in the medical profession. These people truly care about the patients they come in contact with, and are so attentive to their needs. I know that’s not the case across the entire field, but I feel very fortunate to have been paired up with everybody I have so far. Thank you God!
Praying for tons of healing over the days until I see the doctor next week, and that none of this will prevent me from traveling to Houston. My plan is to leave Wednesday after I get disconnected from the pump! We’ll see how that goes! I really feel I need to make the trip because my team members are getting swamped!
Have an awesome day!
The other day the Vonk boys – Benjamin, Nathan and Matthew – along with their parents visited us and brought me a very, very special gift!
What you see below is what I’m calling Links Of Hope! They made a super cute paper chain, where each link represents a remaining chemo treatment. There are 10 links in this chain, which is exactly how many treatments I have left. And, major bonus, each link has a bible verse written on it (by the kids themselves!). I’m totally excited to read the verse during the time I’m sitting in the chair on Chemo Mondays!
In addition to this amazingly creative and thoughtful gift, they also brought me a bag of supplies to help with the neuropathy. Suffice to say, my hands and feet will be warm for a long time to come, and I’ll have some very tasty warm liquids to drink!
The outpouring of support for me and my family during this time has been absolutely amazing, and appreciated more than we can ever express adequately. Thank you so much for your continued support, thoughts and prayers. I will forever be grateful.
I hope you’re all having a great week!
This morning Michelle and I visited the very friendly Wound/Ostomy Care (WOC) nurses at St. Josephs Hospital to have them check out my recent infection. We were fortunate to work with Louann, who was the very first WOC nurse we met there back in August, and who was the one who decided where my stoma would go. She’s an amazing person!
Louann verified that my infection…basically an ulcer…is super nasty and is going to take some care to heal. She spent quite a bit of time exploring the insides of the wound with a long Q-Tip, and let me say, aside from some back pain when I was in college, that hurt more than anything I’ve ever felt, including my surgery! But it was necessary to gauge the extent of the infection. Suffice to say, it’s pretty extensive. She showed me how to pack the wound with some material and then apply a protective layer over it so I can attach my ostomy bag and not have any leaks. She provided me with the materials necessary to pack it myself, or said she would do it for me. I have to admit…I may have reached the limit of my “gonna dig out my own bullet” manliness on this one and may have to engage her services again. I’m not sure I can inflict that amount of pain on myself!
I have an appointment with my surgeon tomorrow to get her opinion on the situation, and then weekly followups with Louann. The good thing is that it won’t prevent me from traveling, as I know what to do now.
This is another great example of letting people who are experts in an area you need help with show you what to do. Louann wasn’t the slightest bit grossed out by it (or at least didn’t show it…and neither did Michelle!), and she new exactly what to do to help me help myself in this situation. She’s a true professional!
Please pray for a quick healing of this infection, for it not to spread, and for this to be the last time I ever get one!
Have a great day!
Hello! I hope everybody has had a wonderful weekend! Mine wasn’t half-bad. I got to spend all of Saturday doing #GCityServe with Grace Community Church. We fanned out across the city and partook in many projects, like the Sold No More 5K Run, Sister Connection stocking, Gospel Rescue Mission cleanup, Catalina Village visits, and providing some meals to the homeless at Santa Rita Park, to name a few. It was a great weekend of service and family.
The past two months since my surgery and starting of chemo have been pretty “easy”, as I’ve reported here. Things have been mostly smooth sailing, until recently, when the waters started getting a bit choppy. Today was kinda like a rogue wave in the middle of the ocean that threatens to capsize the boat!
For the past week or so, I’ve had a pain immediately under my ostomy bag wafer. It couldn’t be in a worse spot, because it’s right under the plastic portion of the wafer, and there’s literally no way to avoid putting the wafer on it. The last couple of time I changed my bag, I could tell some sort of infection might be brewing, but I was unsure of what it was. I assumed it was an ingrown hair or something, and I was playing it by ear (but had plans to have it looked at). Well, today during church services, it started to bleed. Dang!
I managed to finish out first service (I was recording the Blender Band), and then headed to Urgent Care in Oro Valley to have it checked out. I’ll save you the gory details, but it’s probably the grossest thing I’ve ever seen on my body. We cleaned things up, devised a method to allow me to attach the wafer but still let the wound breath, pumped me full of IV antibiotics, and sent me home with two other antibiotics. I also spent some of the time while I was waiting cancelling my trip to Houston this week. I was very bummed about that.
For me, this is one of the “complications” I had dreaded the most. Skin care around a stoma is of supreme importance, because the area is always moist, there is hair that grows against the appliance, and it’s a generally inhospitable area of the body. Since I’m not entirely sure what caused the infection, it’s hard to say what I would have done different. But, it’s now something I have to manage that I had really hope to avoid. If you think about it, though, I suppose it’s inevitable for something like this to happen in my lifetime with an ileostomy, so I might as well dive in head first!
So, this week I’ll make an appointment with a Wound Care/Ostomy Nurse at St. Joseph’s (I tried to last week but apparently need a referral) to understand how to care for this going forward. I’m very confident that they know exactly what to do, and I’ll be healed and moving forward in no time. Hopefully…fingers crossed…maybe I can still make it out to Houston this week! Ultimately, though, I’ve got this #InTheBag!
Major props to the Oro Valley Urgent Care team I interacted with today. I presented them with a situation none of them had experienced before, and they were very professional in trying to figure out a solution. I even got a lead on how to prevent neuropathy using some natural methods!
Many thanks to everybody who expressed concern for me today, and who prayed for me even though you didn’t know exactly what was going on. I take each experience I have on this road as something given directly by God to me. I don’t always know why, and what good will come of it, but I can say for certain that quite a bit of good has come from it all so far. You are an amazing church family, a super group of friends, and I love you all!
Have a great week!
Well, I wish I could say that this week’s chemo was as good as my first session, but it for sure wasn’t. In fact, it was much worse.
The fatigue I experienced this week was crazy. I had to take the day off from work today because I just wasn’t feeling well at all. I managed to make it all the way through work on Thursday, but it was a struggle. My doctor told me that if I felt like I was dehydrated and super tired, that I should come in for a bag of fluids. So, today Michelle and I scheduled an appointment and I sat there for an hour while a bag of Sodium Chloride dripped slowly into my body. I do feel a bit better now, but am still tired.
The neuropathy this time was much more severe than last. It started during the course of my treatment on Monday, and was much, much worse than my first treatment. This time the cold in the air caused pins and needles in my hands. Standing on a cold surface with just socks caused pins and needles in my feet. And drinking something cold…forget about it. Total pain and the worst taste you can imagine. Fortunately, it’s starting to clear up. So for that I’m intensely grateful.
I’ve received many emails of encouragement and prayer this week. Thank you very much for that! It truly helps me get through the harder times.
Have a great weekend!