Post Chemo Report

We made it! B has seen the last of chemotherapy forever, god willing. This is the fifth day since his last treatment and it seems like he is on the upswing of starting to feel better, just in time for us to commence celebrating. His parents will be arriving here in Portland on Sunday and staying for several days, and we are really looking forward to seeing them and celebrating with them. Then we plan to hit the road next weekend for some end of chemo/ 5th wedding anniversary combination celebration. We had originally planned to go up to Vancouver, BC, but after reflecting on our past travels we realized that our most restorative vacations have involved getting away from the city. Thus, we have altered our plans to include a quick stop in Seattle to see our good friends V & C (who just got back from a wicked sick road trip of their own), and then back down to the central and northeasterly regions of Oregon where we plan to climb mountains (or ride cable cars up them), dig for fossils, soak in hot springs, explore ghost towns, see wagon ruts left over from Oregon Trail pioneers, sleep in a tepee, howl at the moon, and otherwise putter around what is supposed to be a very beautiful part of the country, sans cities.

B has an appointment with the radiation oncologist the day before we leave. They’ll make a mold of his body at that appointment, and ink him up with some imitation blue chickenpox that will be strategically located to help them focus the radiation in the right place on future visits. His first radiation treatment will be on the Monday following our return from our vacation. He’ll be getting treatments every day of the week except Saturdays and Sundays for three and a half weeks. After that, they’ll probably do some scans and a follow up with Dr. Urba, and if everything looks good we may be able to schedule a port removal surgery for some time in the near future. I know B will be happy to see that thing go when the time comes.

Thank you to everyone who has supported us (if you’re reading this, I am most likely talking about you) through this difficult time. Every message and gesture of kindness and support means so much. Please continue to keep B in your thoughts / prayers as he commences the second stage of treatment.

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Please Note

One of the common side effects of chemotherapy is a condition commonly referred to as chemo brain. Chemo brain can have a variety of symptoms, but generally involves cloudy thinking, forgetfulness, difficulty with basic language (like not being able to think of the word for that fuzzy domestic animal that likes fish and says “meow”), and/ or an inability to multi-task. No one knows exactly what causes chemo brain or how to prevent/treat it, but it’s so common that B’s nurses warned us about it when he started chemo and, sure enough, he has been experiencing many of the symptoms throughout much of his treatment. But what the nurses didn’t warn us about is that chemo brain is apparently contagious and spouses are particularly susceptible.

Okay, so I might be making that last bit up. But there is no doubt that my brain has not been functioning entirely properly as of late. It has gotten to the point where I have to write everything down on note cards if it’s important for me to remember. This includes jotting down an overview of a task before I begin it so that I don’t forget what I’m doing mid-execution. I do this when I make dinner, when I clean the house, when I am at work, when I run errands, etc. These days I’m constantly having to clean out old scribbly index cards from my pockets/ bags/ around the house/ in the car/ etc.

The good news is that chemo brain usually disappears after treatment is completed, at least for the actual chemo patient. I don’t yet know if there’s such a thing as radiation brain. I guess maybe I should add that to my “questions for Nichols” card.

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A Good, Good Day

Funny how basic things like food and sleep and sunshine can make such a difference. Today was such a good day. Slept in, vanquished a slew of weeds at the farm, thrifted tennis rackets from Goodwill (there are courts at Laurelhurst about two blocks from our home), and discovered an AMAZING pie place down the street from our community garden. The above photo is one that I stole from the internet and shows the front case of traditional fruit pies that the cafe offers. What it does not show is that there is also a second case of cream pies that resides behind the checkout counter, which is where my selection came from today. I chose a slice of peaches and cream pie, which doesn’t sound that good I know – but that’s because you’re thinking of instant oatmeal or corn syrupy yogurt. Just trust me, this pie was divine. Impeccable flaky crust and juicy chunks of succulent peaches layered underneath inches of fresh whipped cream… Then when I returned home this evening, I had the pleasure of making dinner with chard and blue potatoes from our garden. Oh summer, you spoil me rotten.

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Chemo 5

I feel bad for not keeping up with this blog better, but writing takes effort and I’m tired all the time these days, so I just have to cut my losses sometimes. Ah well…

If you’re following B’s blog, you know that we got the results of his PET scan today and that things are looking good. This is hugely encouraging/ reassuring. B posted pictures of the CT scan images, and I wish that he could have posted pics of the PET images too; they were really quite dramatic, even more so than the CT pics.

While it was nice to get the good news this morning, the enjoyment was short lived. The chemo treatments are hitting harder and harder these days, with the effects kicking in faster after each treatment (B was looking ill less than an hour into the treatment today; he usually doesn’t start feeling bad until after we get home from the hospital), and the nausea and fatigue seem to be hanging on longer and longer each time as well. The cycle is getting to be pretty tiring for both of us. On B’s bad days, his energy is sapped from the side effects, and all of my energy gets spent taking care of him and managing life without his assistance. On his good days, we both feel a lot of pressure to make the most of the short time that we have until he starts feeling bad again. Energy rationing is definitely trickier than usual, with imbalances causing greater disturbances than they normally would. But all in all, I think we’re managing rather well. Thank god we don’t have kids or super demanding jobs or anything like that. We are fortunate to have the option to just let some things slide for a while when we’re all out of steam. But so much for the long walking/ hiking/ biking trips I was dreaming of earlier this summer. I get tired just thinking about that stuff now. I reckon we’ll be active and traveling again one day, but I don’t even daydream about it much right now.

On another note, my birthday is later this week. I’ll be twenty-five. Oddly, it’s the first birthday in recent memory that I’m not sort of dreading. I guess I have bigger fish to fry this year, heh heh. I’ll be working probably ten or eleven hours that day and it’s extremely likely that B won’t be feeling good, so we’re not really planning to do anything particularly celebratory, but I don’t really mind. If we could somehow be magically transported to a hammock in Hawaii for a day, that would be great. But seeing as that can’t happen, I’ll be perfectly happy if B is feeling good enough so that I can get some nice birthday snuggles in at the end of the day.

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Delish Nutrish

I am finding it harder and harder to write blog posts. When I started this blog at the beginning of our cancer journey, I think I had the idea that B’s illness was this specific entity that was going to have specific and somewhat obvious/ easily identifiable impacts on our life that would be relatively easy to define/ write about. But it hasn’t turned out to be so simple.  Sure, there are the obvious milestones of Dr.’s appointments, test results, etc.; but so many of the impacts of this disease are manifested in between these milestone moments, in the tedium of day to day life. And, like the physical side effects, many of the emotional side effects seem to be cumulative, starting out very subtle and gradually increasing in intensity. Also, my emotions seem to behave somewhat perversely; I don’t always feel happy right away when we get good news, and likewise it often seems to take a while for me to work through any sadness or anxiety or stress when things get tough. All of this is rather difficult to describe, hence difficult to blog about.

Luckily, today I have something a little less abstruse to talk about because today we visited a naturopathic nutritionist for the first time. Much of what she had to say confirmed ideas that I already had about what we (and B in particular) should be eating, but there were a few new insights that we came away with as well. Here’s an outline of some of the points I took away from our conversation:

– First off, she mentioned that most wheat is extremely hybridized and generally more difficult than other grains to digest, which is something that I had never heard before. She suggested that Brandon pay close attention to how he is feeling after he eats wheat to see if it is something that he might want to avoid. She recommended some alternative grains for us to try as a substitute for wheat, including millet and amaranth, two grains that I have never cooked with before.

– Lately B and I have been avoiding meat for vagueish reasons. Dr. von der Heydt recommended incorporating small amounts of lean, appropriately raised meats into our diet, mostly because it is just so important that B is getting a lot of protein right now. She also recommended beans, nuts, hemp powder, etc. to help round out B’s protein intake. One of the meat products she recommended consuming regularly is homemade stock. Apparently homemade stock done right is intensely packed with nutrients as well as very easy to digest, which is important for obvious reasons but even more so for B because his digestive system is being damaged right now by the chemo and he isn’t able to absorb nutrients at normal levels. She recommended 8 oz of homemade stock per day.

– B has already been drinking a lot of fruit smoothies, which he makes with hemp powder and spinach as well as whatever fruit/ yogurt we have on hand. She recommended adding 2 tablespoons of flax seeds to this every day for extra fiber and omega-3’s.

– We talked about dairy, and at this point the jury is out on whether it is good or bad for B. There are a lot of benefits that dairy can have, but some people have an intolerance for it. She recommended using raw dairy products if we choose to incorporate dairy into our diet. I asked about the risks associated with illness from non-pastuerized dairy products and if we should avoid these products while B’s immune system is potentially compromised by the chemo, but she said that the risks were extremely minimal if we do our homework and make sure we’re purchasing from a reliable source. According to her, you are much more likely to get sick from supermarket spinach or a McDonald’s hamburger than from raw dairy products from a trusted local farmer.

– We also talked about soy. She recommended fermented soy products such as tempeh and miso, but said to avoid soymilk, soy protein powders, and excessive amounts of tofu or other highly processed soy products. And since soy production generally uses heavy amounts of pesticides, she suggested seeking out organic soy products.

– She recommended drinking mostly water and avoiding drinking a lot of fruit juices because of their high sugar content. She also said that when drinking juices or eating very sugary fruits like apples, it is good to pair them with a source of protein so that the sugars will be absorbed more slowly into the bloodstream. I thought this was interesting because I have noticed that I often feel bad if I eat an apple by itself, but I feel fine if I eat apple slices with peanut butter.

We talked about a lot of other dietary recommendations as well, but those are the ones that stood out to me and that I can remember off the top of my head. Some other interesting advice that she gave concerned exercise. She encouraged Brandon to try to get some mild exercise, even on the days when he’s feeling nauseated. And for those days when he is really just feeling too sick to move, she said that simply visualizing exercise can have benefits. B tried this, and he actually said it did help him to feel better. Who would have thought?

Dr. von der Heydt also gave him a homeopathic remedy called Nux Vomica that helps relieve nausea, and has been beneficial for some of her other patients who have undergone or are undergoing chemo.  We are supposed to check in with her next week after B’s next chemo treatment to see how the Nux is working out.

I meant to ask about multivitamins today, but forgot. I have never bothered taking a multivitamin, because I feel that my diet is probably sufficiently varied and healthy to provide the array of micronutrients that I need. But I’ve been wondering if B should start taking one since his body’s ability to absorb nutrients is compromised by the chemo. I haven’t just gone out and bought one because I know that a lot of people have difficulty digesting them, and I’m worried that taking the wrong one might just make things worse. I guess I’ll ask her about it next time we talk. Maybe homemade stock, flax seed smoothies, and a lot of green leafies are a better way of getting the nutrition that he needs anyway.

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Chemo III

B’s third chemo treatment was yesterday. It went off without a hitch, and the port access didn’t hurt him this time. In fact he didn’t feel the needle at all, which is wonderful. I don’t know if it was the way the nurse did it, or if it’s normal to not feel the poke after the wound has had a chance to heal. Either way, we were both really happy. His lab results came back really good as well.

Even though B’s actual treatment went really well, it was a difficult day for me. I was tired and feeling emotionally fragile for various reasons, and we ended up having to sit across from a crotchety elderly lady who talked to us (more like at us) nonstop for the duration of B’s treatment (about 5 hours). Under normal circumstances, this probably would have been irritating at worst, but yesterday it felt like pure torture. By the end of B’s treatment, I was absolutely frantic to leave and I felt upset by the experience for the rest of the day. Ugh.

One reason that I think I’ve been feeling so tired lately is that I haven’t been drinking enough water. I always have a hard time remembering to drink enough, and I think I’ve probably been getting an average of about one glass/ day for the last week or so. Not good. I used to be a lot better about drinking when we kept bottled water around the house, but those bottles are so wasteful and are costly as well, so we don’t do that anymore. I’ve tried toting a Nalgene around, but Nalgenes are so much clumsier and more inconvenient imo. So now I’m wondering if a narrower water bottle would do the trick. I notice that drinking water often helps relieve foggy-headedness and fatigue almost immediately, so clearly adequate hydration is worth a little extra effort.

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Insurance Update

So I spoke with Aetna on the phone today, and they’ve dropped the pre-existing condition business. Phew! We’ve already received around $30k in statements from the hospital, and those charges don’t even cover all of B’s port surgery or any of his chemo. These are not bills, just statements of what they’re billing the insurance company for, but yikes! We’ve heard that each Neulasta injection (the immune boosting shot that B gets after each chemo treatment) costs about $5k. Still thanking my stars that we didn’t drop our insurance!

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