It’s Valentine’s Day and we start it by waking up early, showering, packing snacks and essentials into our chemo kits, and showing up at 8:00 a.m. for the lab work and port access.
My favorite port nurse was busy with another patient so I saw a new port nurse who did a wonderful job of painlessly accessing the port. My port catheter, the one that goes over my collarbone and into my jugular vein, down into the top of my heart, was wonderfully patent, which here means it was clear of gunk and blood clots, making the task of drawing a couple of vials of blood for my blood tests easy work.
Next I went upstairs for a CT scan to check whether we have achieved tumor regression. It took until about 1:30 p.m. for the scans to be analyzed, so we couldn’t actually do our scheduled 10 a.m. oncologist appointment, or the 12 p.m. surgeon’s appointment until we had that information, so we had a very long 4-hour wait in the oncology waiting room while the CT got studied. My wife went down to the Panera bread place and got me a wonderful caprese sandwich. It hit the spot — I had skipped breakfast in case I needed to fast for a cholesterol test or something, and I was super hungry. I don’t generally know ahead of time what they’re going to test when my blood gets drawn.
Finally the CT results came, and the liver tumor that measured 1.3cm now measures 1.0 cm, about a 23% reduction in diameter, though by calculating the volume of a spherical tumor, that is a 45% reduction in volume. There are no observed new or increasing liver lesions. Also it never seeks to amuse me that this line always appears in my CT scan reports:
- Pelvic Organs: Unremarkable.
I don’t suppose this needs a lot of comment, but doesn’t that sting just a little?!
So I’ve got a lot of confusing pictures but hopefully adding arrows will make it easier:
I am pleased that I got a great, encouraging visit with my cardiologist last cycle and since my metabolic syndrome markers are all down, hopefully we’ve stopped any atherosclerosis in its tracks. So that was a picture of my happy heart! In the CT scan, looking at the stent in my right coronary artery is kind of cool, it sparkles like a Twilight vampire! How cool is that?!
So after the CT scans were analyzed, I got to meet with my oncologist and then my liver surgeon. Everyone is happy the tumor is shrinking. Unfortunately if chemo makes the tumor disappear, any leftover cancer cells will go into hiding like Voldemort and slowly gain strength, only to come back in a year or two with a vengeance. So there will be a review of my case on Tuesday, where we decide what the next steps are. Surgery is risky because the tumor is so deep, and it would require removal of a large amount of liver tissue which has not-insignificant mortality risks. Ablation by sticking a probe in there and hitting it with 5 or so minutes of energy, can damage the bile duct and artery that are very close to the tumor and cause significant complications. The next best thing would be to start radiation which would kill the tumor cells and any innocent bystanders, or else possibly turn my liver into Godzilla. Either result sounds pretty cool, honestly.
In the meantime, we’re going to do three more chemo cycles first: a double whammy, then a single whammy, and another double whammy.
I am breathing a little easier right now, knowing we are making great progress. I am feeling so much less fatigued and have more stamina, and I am hopeful that we can safely stop chemo, load the hepatic artery infusion pump up with a big dose of glycerin or maybe vodka, and live free for a while. Big smile!
After the hopeful meetings with doctors, I went up to the infusion clinic and we had another good wait until about 3pm, when I got a bed. My nurse was Nurse H, who I’ve had once before and she is a ray of sunshine. She gave me the pre-meds (12mg dexamethasone + 8mg Zofran), then used the big huber needle to access my HAI pump fairly painlessly and confidently, though not quite as expertly as Nurse O. I was definitely pleased with the performance though. I’ve had several people in training do it and it was less pleasant, but never too bad.
Nurse H is super helpful and cheerful, and it was a pleasure to spend a couple hours infusing irinotecan after getting my atropine. The atropine makes you feel a little funny, your heart makes a little hidey sort of feeling, then your forehead gets a little dizzy, along with your eyes. But with the atropine on board, the irinotecan doesn’t give you abdominal cramps and pain, so a little dizziness is just peachy.
The irinotecan infusion went really well, I didn’t feel ANY nausea or ill effects except a full bladder. I got plugged into my 46-hour 5-fluouroracil IV pump and we were set free around 7 p.m., much later than usual. An 11-hour day!!
In a VERY RARE event, I was feeling just fine and hungry for dinner, so we had an impromptu dinner at Freddy’s Frozen Custard and Steakburgers, since it was open and I never got to have my Monday strawberry milkshake. Pretty much ever since chemo started, I have treated myself to a strawberry milkshake on the day before, just to keep my spirits high and my stomach happy. Freddy’s is somehow my favorite, the flavor of the custard is better to me than the soft serve ice cream in most joints. Even better is a milkshake made with Hershey’s ice cream and strawberries… wow. Even better with heath bar crumbles. So this is what I ordered, a strawberry milkshake with heath bar, some tiny shoestring fries and a patty melt, which my tummy wasn’t as excited about but seemed to work.
I immediately went to bed after I got home, somehow thinking I could fool the steroids into letting me get a full night’s sleep. I also took 5mg of melatonin. No such luck though, the kids were having super loud 90dB conversations outside my door, so I cranked up some storm sounds on YouTube on my TV, and that helped. But I stared at the ceiling until about 1am, which is two hours earlier than normal.
Wednesday night I’m going to try a little new trick. My sister gave me an amazing purple flannel quilt and it’s sort of magical at causing me to sleep in warm happy bliss. I think of Like Water For Chocolate, where Tita’s emotions are transmitted to the food she makes. This book is a great read, and if you only have a couple hours, you can watch the amazing film. Do it! I feel like my sister must have been super tired when she made this quilt, and the energy woven into the quilt takes about one minute to drop me into deep sleep in my recliner. I’ve got to bring it up to my bed tonight and try it there! In the meantime at 8 p.m. I took my usual evening drugs plus 4mg of the steroid dexamethasone, which lessens side effects from the chemo but also can keep me awake and definitely it raises my blood sugars.
I never got to try my sister’s quilt experiment because after midnight as I was headed to bed, my youngest son approached me needing help with the math on a chemistry project. I tried to understand the problem for about an hour but my brain was exhausted, I absolutely couldn’t keep a focus on anything, and kept falling asleep into micro-naps. We both decided to go to bed and wake up early. So I fell asleep, exhausted, more or less immediately and woke up at 7am with an unsettled stomach. We finished the math and my son packed up and went to school. I had to shower and go to work, still pretty tired with about 5 hours of rest.
Thursday I woke up, worked the full day, then went to pool league. We earned this cool patch for winning 5 out of 5 matches of 9-ball and shutting out the opposing team.
I was late getting to bed Thursday night, but I was quite exhausted so I feel asleep pretty easily and got 7 hours of sleep. What bliss! I woke up Friday much better rested, with my brain working properly at last, at least until 5pm when I started getting really tired. Over the next 12 hours as the steroids wore off, I slept probably 10 of those hours. Also once the steroids were gone, I had to tolerate a near-constant tummyache for days and days. And my mouth sores arrived full-bore and have made it hard to eat, chew, or swallow. By Saturday I had lost 6 pounds and weighed 197 lbs.
Saturday I got to sleep in! How amazing! We got a new elliptical and it was delivered on Thursday, so the kids were bugging me to “help” assemble it. My oldest was a lot of help actually, and it took us about 3 hours to put it all together. The instructions consisted almost entirely of exploded parts diagrams, so it was quite difficult to follow, but we managed it. The box it came in was of particular interest to the cats, but when one of the kids and I claimed the territory by getting into the box, the cats ran away scared.
As far as the chemo side effects go, the entire “bad” week has been much worse than any of the last 6 or so rounds. My stomach is nearly always unsettled. Even Tuesday, the first day of the “good” week hasn’t been so good. I discovered cottage cheese for some reason calms my tummy. Until this cancer battle, I don’t think I ever had more than a couple containers of cottage cheese in my life, but now I go through several in a month.
On Tuesday, the start of the “good week,” the oncologists, interventional radiologists, and surgeons had a meeting and one of the cases they discussed was mine. They recommended dropping two of my three scheduled chemotherapy rounds and using radiation treatments to go after what remains of the tumor. They felt that now that the tumor is small enough, there is about a 95% chance they can eliminate it with radiation. There will be side effects like nausea, vomiting, diarrhea, skin burns, et cetera, and recovery from the radiation treatments can take several weeks. There is also a risk of radiation induced liver disease, which is… not a good thing.
I have an appointment at my next chemotherapy day with the interventional radiologist to hear the plan, its risks, costs, and side effects. I will update the blog with the results of that consult and the plan going forward.
I have to admit that I am excited that chemotherapy #26 might be the last round. Three rounds of radiation means that perhaps in less than a month I might be recovering, and hopefully looking at this cancer in the rearview mirror. At the same time, the chemotherapy has seemed to keep the cancer from metastasizing further, and stopping it feels a bit like wandering out of the green safety zone. But I can tell you, I will not miss chemotherapy.
I feel like this has been the worst round of chemo. I had abdominal discomfort and an upset tummy for 10 solid days, and intermittently even up to the day before round #26. Mouth sores persist, even the day before the next round. In most ways, I never had a “good week” except that my sleeping was much better.
On Friday morning at around 4:00am, according to my middle child’s recollection, there was a great deep thud and crash, and little did our sleeping family know but that a tree at the corner of our yard fell across the road and took out the power lines on the other side. I woke up around 5:00am to the police shining lights all over, and then the power company arriving and sitting quietly in their bucket truck contemplating the destruction. I had to take a half day off work that morning because when the power company’s tree crew came, they blocked off my stree and were very keen to know who the tree belonged to. I was waiting for people to show up in my yard with torches and pitchforks, since everyone’s power and internet was out now.
I was pretty sure that the tree wasn’t actually mine. It is actually three very large trunks merged into one at the base, and one of those trunks leans dangerously over all the cars in my driveway, and will very likely remove the corner of my garage if it comes down, which is all but certain now. About 6 years ago the tree had clearly died and I approached the neighbor about it, even offered to go in halves on the cost of removing it. The neighbor wanted to have a survey crew look at it to determine whether it was his tree or mine. Then, a few weeks later there was a FOR SALE sign on his property and it sold instantly, and there was a new owner moving in very shortly after. I meant to discuss the tree with the new owners, but I didn’t want them to be looking down the barrel at a several-thousand-dollar tree removal expense while still in their homeowner honeymoon period. I never got around to talking to them, since a year or two later they renovated the house and sold it to my current neighbor, S.
I checked my survey and though the edge of the tree encroaches on my property line one foot away from my split-rail fence, the centers of all three trees are solidly on my neighbor’s property. So the power company cut the tree up and got it out of the road. It’s nice wood, ash I think, and I’m thinking since they put all the wood on the street side of my property, if no one wants it I might want to get it milled down into little boards for woodworking.
Then on Sunday, day 13, the filling in my tooth all the way in the back on the top, disintegrated and made my food all crunchy, I had to spit it out. I didn’t experience any pain but I could notice with my tongue that there was a huge hole down the center of the tooth. I switched to soft foods and prayed my dentist could fix the tooth before my next chemotherapy round, as they do not like you having dental work during the chemo, as it can introduce bacteria into the bloodstream that your immune system isn’t able to fight. On Monday I called the dentist’s office and politely pleaded with them to fit me in that same day before chemo, and they had me come in at 9:00 a.m. and wait until there was a free space in my dentist’s calendar. I got put in a dentist’s chair and given X-rays, and when my dentist got free for a bit around 9:30 a.m., he numbed up my tooth, ground out the remnants of the old filling (which was placed back in 2008), and put in a new filling, all in less than 20 minutes and I was released gratefully into the wild. Thank heavens! And many thanks to my dentist as well!
I was super happy to hear this week that our old family friend (old for a long time, not necessarily the ancient kind of old), Mr. P is coming home from the hospital after surgery to remove cancer from several abdominal organs. Mr. P. is a huge inspiration to me, his ability to remain cheerful and make jokes about his years of cancer treatment and chemotherapy always cheer me up when I call him to chat and commiserate. I don’t think I would have as positive and cheerful an attitude about this whole cancer mess without his example to guide me. He is one of the dearest people to me in the world, and is like another father to me. My prayers are with him every day, as well as with my friends P. and T. and L., who are recovering from their own cancer battles. And of course my prayers go out to all people affected by cancer, and all who suffer with health problems, may all of us see lasting health and be free from pain.
That’s pretty much all I have to report for this cycle and besides, my cat Boots has fallen asleep on my mouse and I have no way to click around and edit things anymore. So anything I write from here on out would just be stream-of-consciousness ramblings. Or wait… I think it’s all stream-of-consciousness ramblings anyway. Oh whatever. Be well everyone, and take good care of yourselves!