The New, New Plan

Well, at 6:30 AM, my Radiation Oncologist messaged me with a change to my plan. He reviewed my past lung CT scans and feels that they are growing too slowly to have priority over chemo. So, after brain radiation we’ll start chemo.

In theory, if we hit the right chemo, it should also affect the lung tumors, too. So, the liver starts getting treatment about 2 weeks faster under this plan, which is great, as they have also been my 2nd biggest concern (after brain).

I had a heck of a time getting out of bed and getting to work, today. The bed kept calling me back. But, I managed to make the drive (actually got to work about 30 minutes earlier than I normally do). I’ll probably be fighting sleep a lot today. Not sure why…I slept well last night.

Meanwhile, still very little appetite or capacity to eat. I didn’t weigh, today, but probably a little lighter. Tried a smoothie on the way home from work. Managed to finish about 16 oz of it (bought a 32 oz). Also had a ham and cheese sandwich. I am trying…

Well, better get what work I can get done, done. I’ll let you know if the radiation gives me any mental superpowers (or erodes those mental superpowers I already possess).

A New Plan

Well, the Radiation Oncologist’s report changes my treatment plan pretty dramatically. Because of the number and position of the brain tumors (some could not be reached by Cyberknife), they will be doing whole brain (avoiding hippocampus) radiation. Hippocampus is involved in memory, so avoiding the hippocampus should help to avoid memory issues.

The rest of the brain radiation can cause side effects. Basically anyything else the brain does could be affected, including speech, problem solving, vision, basic personality, motor skills, … well, you get the drift. But, they have started me on another drug that should help to reduce or even prevent these side effects.

So, 9 days of that, then another 14 or so days irradiating the lungs. Could cause coughing…nothing new, there.

Once all that is done, it is on to chemotherapy. No end date planned…usually it is when the patient can no longer tolerate the chemo or if they decide the chemo I’m on isn’t doing what it needs to do (which is kill the liver tumors). But, then they’d likely start me on a different chemo. It will be 3-week cycles, with treatment the first two weeks, the one week off. Not sure exactly what the nature of the treatments will be…whether it will be IV or pill and how many days treatment is given during those first two weeks of each cycle. I’ll find out when I next meet with my Medical Oncologist (early December, probably)

I asked when the next assessment (CT scan/MRI/PET or whatever) would be. Doctor said about 2 months. So, they expect me to be around for at least 2 months. Hoping for much, much longer. I am really ready to start feeling better and doing some things. I’ve just been too tired all the time to get out and do very much. Oh, and that reminds me. The main expected side-effect during both radiation and chemotherapy is … fatigue.

So, on top of being fatigued, I’ll be even more fatigued. I’m going to stake out a corner of the couch at my sisters’ houses for Thanksgiving and Christmas and just get up for food. If I doze off, let me sleep (but wake me if anything happens).

Official Results, Soon

Well, I got the MRI on Friday, but have to wait until this afternoon to get the official results. I know there are more than 2 tumors (well, if I’m looking at the scans correctly). I counted 8 or 9. One of the two that were visible on CT (the one in the left prefrontal cortex) turns out to be two that have grown into each other. So, 2pm appointment with the Radiation Oncologist to get results and make a plan.

Meanwhile, my appetite is about as bad as it has ever been. I’m back down to 122 lbs. Besides taking a long time to get hungry, I fill up fast. I’ve never been one who could eat after I fill up. Going to start buying and/or making smoothies to supplement…sweets are less of a problem to get down with low appetite than “real food.”

Otherwise, I do feel more fatigued/tired/winded. Not sure if that is due to not eating enough or another side-effect of the cancer. I’ve been off cancer meds now for nearly a month, so should be recovering from that. But, yesterday I got insurance approval for the next chemo in the drug chain (assuming nothing else changes): topotecan.

Got about an hour before I need to leave for the appointment, so going to try to finish the smoothie I got with lunch and try not to nap.

Now We’re Even Bigger, with More Locations!

That would sound great, if I was talking from the point of view of Costco. But, unfortunately, that is the latest word from my tumors.

Lung tumors have gotten bigger and are affecting nearby lymph nodes.

Liver tumors have gone from one of note with several suspect, to at least 9 (that even I can see on the CT scan well enough to count. In the featured photo, I’ve circled four. Since this is a 2D view, you can’t see the other 5 or 6 (I can by scrolling through the slices). You need to go to the page for this post to see the image…if you are viewing the stream, just click on the post title.

Good news/bad news on the neck scan. The neck is clear. Yea! But the front of my neck has a lot of scarring and “odd” tissue that might be pre-cancerous. So, going to treat it with a fluourocil ointment (Carac). But that isn’t the bad news. The bad news is that that scan showed two probable tumors in my brain: One in my left prefrontal cortex and one in my cerebellum.

So, MRI brain is on tap. Neck CT only included partial brain scan. And, brain shows up better under an MRI than CT (contrast does not cross blood/brain barrier very well). Medical Oncologist sounded pretty confident that the brain tumors can be easily excised with radiation, so going back to my Radiation Oncologist on Thursday to discuss.

Also, chemo changing to topotecan. Oncologist is also looking into medical trials, especially RadVax, and the Stanford Cancer “Vaccine” to see if I would be a candidate for either. Both of those use a small amount of drug(s) injected directly into one tumor. RadVax then gives that tumor a small dose of radiation to cause it to have a larger T-cell response. Both, then, result in your body creating a large amount of T-cells targeted to that specific tumor type…and the T-cells attack all the tumors in the body, not just the one that was injected.

Hit and Run

I was letting my mom out in front of Kroger so that she could go in and pick up her prescriptions when my car suddenly jerked forward. Some dude in a maroon Nissan had clipped the left rear bumper. Not high-speed and it is possible that the damage can be buffed out.

Passenger got out, asked me if I speak Spanish (un poco). I asked him to get his ID and insurance card. He said they were going to park in a space. While I was ducked into my car getting my insurance card, he drove off. Entire encounter was a little over a minute.

Fortunately, I have a high-res front- and rear- dashcam setup, so caught it all on video, including a clear shot of the license plate.

Called police to make a report, then waited an hour. Called their non-emergency number and they told me officer had been dispatched 7 minutes prior, so I waited (was going to ask if I could file another way). But, if they were already en route, didn’t think I needed to do that. After another hour, I called back and found out that they had been diverted to a higher-priority call. Calltaker said that I could cancel the call, go home, then call back and they’d have an officer come to my house.

So, took my mom home and drove home. Officer came, showed her the video, she took some pics of the damage. I emailed the video to her a little while ago. You can see it on YouTube.

Freeze Dried Food Score

Ok, I can’t judge the flavor of the reconstituted beef stroganoff I shared with my mom for lunch, so I’ll base this on her facial expressions and comments. Texture, though, is something I can comment on based on my own experience, so I’ll start there.

I’d score the texture at about a 3. The noodles had broken up quite a bit, so some had powderized. Also, the mostly whole bits were quite mushy. I may have overcooked them before freeze drying. In any event, noodle texture was pretty sorry. The meat texture was mostly meh.

Most of the beef chunks did not rehydrate well, so were pretty tough and nearly crunchy. I did have one piece that had hydrated well, though, and it was pretty good. I think the meat should have been rehydrated separate from the noodles and sauce. The sauce thickened pretty quickly, so I think that bound up the water, preventing the meat from properly absorbing.

Now, to flavor. To me it was quite bitter…but a lot of beef tastes bitter to me right now because of the effects of chemo. Mom said it wasn’t bitter But, needed salt and pepper. Then more salt. I think “I’ve tasted worse” is mostly what her expression said. I’ll guess overall flavor as a 5 or 6. Not gourmet, but edible. If you are hungry enough. Probably would taste better when you are camping, tired, and very hungry.

“Hunger is the best sauce.”

Edward Abbey — Farewell to a River

So, saving the rest for camping food, where a lesser sauce can be more easily forgiven.

Delivery Fail and Food Win

So, as I mentioned in yesterday’s post I hung around the house all day waiting for my kitchen appliances to be delivered and installed by AM Home Delivery and Trucking. They were showing as on the truck out for delivery between 11:30 am and 3:30 pm. I was continuously home from about 10 am. There is no possibility that I missed a knock at the door. Well, at 5:45 pm I had to leave to go to a friend’s birthday dinner (went to Cane Rosso instead of Reata). They still had not arrived. And, their site showed that I was delivery #11, but they were at delivery #14. Today, my shipment does not show up on their site.

They never called. Never texted. Never emailed. Oh, and never showed up. Sent emails to both the seller (Appliances Connection) and the delivery company. Not going to hang around another 7 hours for a no-show. Let’s see how they handle it…I’ll keep you informed.

Pizza and the service was great at Cane Rosso. I got one with a white sauce instead of tomato sauce (tomato sauce still has a bitter, metallic flavor to my chemo-altered taste buds). Had a Virgin Mule (wait, what?). Well, non-alcoholic blend of ginger, lime, mint. That might just be my go-to libation until the liver tumors clear up. Sweetness and sourness are flavors that are still palatable, and the ginger helps keep my appetite going.

Dinner tonight? Leftover pizza.

My mom expressed some skepticism over the taste of freeze-dried food (really, in many cases it tastes better reconstituted than the original). So, I’m taking some freeze-dried beef stroganoff I made a couple of weeks ago to her place for lunch. My only concern is whether the sauce will properly emulsify (not separate into different components). I’ve not tried this one myself, so it will be new to me, too. I made it using real sour cream and a Knorr sauce mix. I will probably take a back-up meal (but also freeze-dried), just in case.

Oh, the Floaters, too!

I suppose “floaters” could also refer to the steatorrhea, but in this case, not. A few weeks ago, I started getting little black dots that I could only see with my left eye. The dots would move with my eye (so, since they were off-center, whenever I tried to look right at one, it would scoot out of the way).

Went to an ophthalmologist who checked out my eyes and told me I have detached vitreous of the left eye, which is a normal age-related degeneration. The main concern with them is that the retina could tear when the vitreous detached, but I was spared that complication. Prognosis: It will never really go away, but will become easier and easier to ignore. As I did in my previous post.

Just saw the neighbor who took my universal gym to the door…took him about 90 minutes to disassemble it. He looked ready for a nap. Now, waiting for the appliances to show up…they gave me a time window of 11:30AM to 3:30PM. Well, sitting here, now, I’m about halfway through that window and they are not here, yet. But, the only thing complicated to install should be the overhead microwave, since I don’t have one of those right now. The other appliances (refrigerator, dishwasher, oven) should be slide-in, plug-in, connect to existing water and drain connections, and done.

Supposed to go to dinner with friends at Reata, tonight. Surely appliances will be completed by 6:30 so I have time to not rush. Maybe even a nap while I wait. Yes, a nap sounds pretty good. Listening to the guy doing all that work disassembling the gym has really worn me out.

Early November Update

Well, it has again been a while since I’ve updated my status, so here goes (I’ll try not to ramble on too much). Actually, have not been a lot of changes.

Chemo

I’ve finished my 4th round of chemo last weekend. Chemo rounds really affect me the most in the first week after treatment…I am pretty tired every day. But, by the second week things are getting better and by the third, I’ve almost (but not quite) recovered to my pre-chemo state. Of course, then it is time for another round, so as long as I’m in treatment I never really fully recover. But, unlike the first major chemo I did, the drop each round is much less…that first time I don’t think I could have taken another round of chemo and continued to be able to walk. But, that chemo was much harsher on my system than the cocktail I’m on, now.

Last weekend was my last scheduled round, for now. That could (and likely will) change after next week. On 11/7 I’ll have a CT scan to see how the lungs/liver tumors look and also see if anything else is cropping up. Once we get those results, decisions will be made as to how to proceed with treatments. I really wish one of the “cancer vaccine” trials fit my profile. Many of those are showing amazing results in clearing tumors throughout the body without systemic impairment. What I’m on now, while somewhat targeted to only the tumors, still knocks down my entire immune system and does a number on my red-blood cell count.

Voice

I ordered a hands-free speaking valve and assorted accessories from a medical supply company. They implied in email that this would be covered by insurance, so I went with a brand that I’m not that fond of. They did say I’d have to file the claim myself. Should have been a clue. I spent nearly $1,000 on supplies, only to find it was all out-of-network (thus out-of-pocket). Also, it doesn’t work very well…still having to use a hand to my neck to get the voice (such as it is) to work. Basically, the device has a little flap that closes when you exhale hard…which makes the air go into the little valve going into my esophagus instead of out my neck.

So, I’ve just ordered my preferred brand, knowing that it also will not be covered by insurance (and around $600, but I’ve tried it in the doctor’s office and it seems to work much better). Seems that routine supplies (basically air filters that snap onto an adhesive base over the stoma and certain types of those bases) I can get w/insurance coverage. Of course, those are also the least expensive components.

Shoulder

The good news on my shoulder is that the accessory nerve that enervates the trapezius muscle is coming back to life. The bad news is that it was “down” for so long, my trapezius is severely wasted. So, I’m going to Physical Therapy every week and getting a set of exercises to help restore normal shoulder function. There are about 12 different exercises, most of which I am supposed to do while laying down. Right now, if I lay down, I go to sleep. So, my at-home exercising is not as frequent as it should be. But, even with that, I can tell a positive difference. Pain in the shoulder is less. And, I can see a bit of muscle tone coming back (albeit very slowly). Hopefully will be able to do more as my post-chemo stamina returns.

Weight

My weight is definitely up from the low dive to 121 lbs after that first chemo round (and week-long hospital stay). I got up to 131, but this week have dropped back down to 127…but a drop the week after chemo seems to be normal. I expect I’ll gain a bit more over the next two weeks. Main issues is just not being hungry. I’ve avoide outright nausea, but have never been one who could eat when I don’t feel hungry. Dronabinol is helping with appetite. Also, the steroids I take for a few days after chemo probably keep me from losing even more. All I can do is eat what I can. Trying still to stay low on the sugars and prioritize proteins, but some things (those things usually being proteins) just taste aweful, even with the lactoferrin supplements (which have definitely improved my sense of taste…but not to perfection).

Steatorrhea

Steatorrhea (fatty stools) continue with maybe a slight improvement. I’m beginning to wonder if it might not be associated with the liver tumor(s). Bile (which digests fats) starts out in the liver, moves to the gallbladder, then is purged into the intestine when you eat. Hopefully treating the tumor in the liver, as we’ve been doing, can help to resolve this. Mostly it is a concern for fat-soluble vitamin absorption (Vitamins D, E, A, and K).

Remodel

Hey, something unrelated (mostly) to health issues! My contractor finished the remodel on my kitchen and baths. I’m digging the full-sized shower in my master bath…so much nicer than stepping into a tub to take a shower. Also looks so much better. Tomorrow, new kitchen appliances are going to be installed, which will almost finish the domestic re-organization. What is left is to put everything back into the cabinets where they belong (didn’t want to do that until I got the new appliances in and considered what other changes I might want to make).

Well, I’ve also been too fatigued to really do much on the putting stuf where it belongs front, and up to a couple of weeks ago my shoulder really limited my ability to lift things into the upper cabinets (even lightweight stuff).

Next up, I’m disposing of a home gym that has been in a front bedroom mostly unused for a couple of years. I think it will be gone, tomorrow. Then the plan is to clear out the other stuff stored in that bedroom (which is mostly going to the curb). Then, take the hall bedroom and clear it out, using the first bedroom to put stuff I want to keep. Tentative plan is to put some photo studio stuff into that bedroom. Next will be to clear some things out of the living room into one of those bedrooms to unclutter the front of the house. Then, I should be finished (I’m guessing some time in 2022).

I’ve been in the house for 35 years and have way too much old, useless stuff sitting here and there. Not a hoarder…I have no issue getting rid of this stuff. But, things I see every day tend to become invisible to me over time…occasionally I’ll look with fresh eyes and “oh, crap, I need to clear some of this stuff out.” We recently had an electronics recycling day at work, and I think I would have won the prize for most stuff recycled…big CRT TV, computer monitors, and old PC components, some over a decade out of date.

Work

I am still coming to work every day. The week after treatment, those days are a bit shorter…I can get here early, but if I wait to late to leave, driving home becomes dangerous. I have fallen asleep at a stop light one time when I pushed it a bit far and woke up to horns honking and a green light. I’m sure they assumed I was texting.

Productivity is not up to par. Hard to concentrate when fighting drowsiness. But, still effective enough. My main concern is staying away from sick people as the flu season progresses. I did get flu, pneumonia, and shingles vaccines this year, so have some protection. But, chemo knocks down the immune system overall, so unsure exactly how much protection I will have. Have already had a few people in the office come down with what was probably the flu, but I stayed well away from them (and they me).

When I was going through chemo last year, I worked from home nearly the entire month of January to avoid getting sick. Trying to keep as much office time as I can this year, having missed so much due to hospitalization already (nearly 3 months in the hospital this year).

Finally

Well not that short of a post. But, at least I gave you headings so you could just read what you might find interesting. Really next up for me is wait and see what the CT fairy brings next week. Try to eat more. Try to do my therapeutic exercises more. And maybe post a bit more often so that these are shorter.

Throat Blog — Poor Taste

Ok, maybe you though I was going to talk about my sense of humor. A good guess, but no, this post is about how chemo has altered my sense of taste.

Around the end of round 1, I started having altered taste, and now it is pretty extreme. The altered taste falls into one of three categories:

  • Taste is modified to something usually bitter or bad in some other way.
  • Taste is muted to neutral “mush” taste.
  • Taste is amplified.

Example, most Mondays I go to a favorite Italian restaurant and get a cup of clam chowder and a Lance Armstrong (that is a side spaghetti with one meatball).

The noodles tasted fine. The marinara tasted metallic, and the meatball tasted like it had been soaked in acetone after the acetone had been used to clean engine parts.

Sweets and salts tend to be amplified. Umami flavors (mushrooms, cream, etc) tend to taste OK.

So, that, combined with a general lack of appetite and early satiation have me fighting to maintain a bantom weight of 121.7 lbs. As a point of reference, I weighed about 134 before the first cycle started on 8/23.

Doctor prescribed Dronabinol which is a man-made form of THC. It is supposed to help with appetite, and does not get you high. I’ve been trying it since Saturday and it might be helping a little…my weight has plateaued at 121.7 lbs. Hopefully it will stop dropping, now. I’m getting “crepe paper” skin all over.

I don’t feel particularly great, but also not particularly bad. Somewhere in the “meh” zone. No real nausea…but I’m sure if I kept eating after my “full” signals started firing that could quickly change. So, also trying to spread out the calories. Going to switch to some other side pasta (maybe Fungus Fettuccini). And, keep on keeping it down.