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About Jonathan

Hi!

Onc talk

In today’s consult, I got to meet the oncologist herself, Dr. Chiorean. This was unusual, as these visits are typically with a PA. I thought I’d jot down a recap while that chat is still fresh in my mind.

First, she’s having my oxaliplatin dose reduced. Sounds like this is a fairly standard step taken in the final infusions. In her delightful Romanian accent, Dr C explained how the chemo side effects increase over time. She moved her hand in a flat line, describing the initial infusions, and then angled her hand sharply up, to demonstrate the cumulative impact in the final 2-3 infusions.

She made this call after she heard me describe my increase in side effects after the last infusion. Cold sensitivity certainly increased for me, significantly. Also, she was curious to hear about my struggles when I returned to work too soon after that infusion, and she helped me identify brain fog as the big issue there — not being able to think clearly was very stressful for me, on those workdays. She said that brain fog is one of the many side effects from Oxaliplatin. The main risk she is concerned about is that these side effects can persist for several months … or longer. Hence the reduction in oxaliplatin today.

She also addressed my questions about scans. No; nothing was missed earlier in the year. She explained how the chemo and radiation phases really do work together; after the chemo is done, is when you assess the overall impact. She said the radiation is still doing its thing for six months after the radiation treatments stop, which I didn’t realize. Scans and sigmoidoscopy will occur at some point in December.

Regarding the surgery — there’s always the chance I won’t need it (we’ll see what the scans say). If it happens, she said it might not be until mid-January — but it’s not certain yet. She moved her hands out on each side: “plus or minus … many weeks.”

I did I get a call from the surgeon, Dr Atkinson, last week. She told me she’ll be going out on maternity leave in about three weeks, so it would not be her doing the surgery. She indicated more of a late December timeframe for the surgery. Dr C and Dr A need to meet and “align,” as everyone always says at my work.

Fortunately, my neutrophils are increasing, which is what we want to see (if they get too low, as what happened before, the infusion gets delayed to a later date). So, it’s good to see that those accursed nivestym shots seem to be doing something.

I’ve been getting the oxaliplatin via IV over the past hour or so. I’m sleepy from the lorazepam, but have no fear: I won’t drink the chemo!

Happy Halloween infusion day

I am at Fred Hutch for my penultimate chemo infusion. Just got my blood drawn and feeling nauseous, hoping this will pass soon. Unfortunately I have developed a nausea reaction to the smell of the alcohol used for disinfecting — which they always apply quite liberally before accessing my port. I’m not able to completely hold my breath, so I catch some of it and am immediately queasy.

This is also part of why I hate the self-administered nivestym shots so much. Along with the nastiness of poking a needle in your belly, you need to clean the injection spot with an alcohol wipe. Boom – insta-nausea. Apparently I am a weird minority on this — according to the internet, a lot of folks seem to get relief from nausea by sniffing alcohol wipes.

I am boring, so I didn’t wear a costume today, but I’ve seen a few fun costumes here in Fred hutch this morning.

The last couple of days were incredibly busy at work, as I prepare for additional time off throughout November. It’s clear to me that I returned to work too soon after the last infusion. For the final two infusions, I’ll be taking the full week off following the infusion appointment. That means just six working days in November, so I had a lot to do, to prepare for that. I feel like I tackled that to-do list pretty thoroughly, and am happy about that — I feel freed up from worrying about work.

Well, I think the consult should be happening soon here, and then on with the infusion. I am really curious about when my next scan will be. I haven’t had any scans since April, which seems … like an awfully long time, considering I’ve been actively in treatment ever since then. No idea how effective any of the radiation or chemo has been, to date.

Dreams and cancer

My sister and I drove back to Seattle yesterday, arriving in a storm of torrential rain. Last night, I guess I was tired from all the travel, because I slept deeply enough to dream vividly.

I’ve noticed that major life events are not immediately reflected in my dreams. For example, I was diagnosed with cancer back in early April, but this topic didn’t start showing up in my dreams until a few weeks ago. I recall a similar pattern with big events earlier in my life.

Last night’s dream was a weird one.

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Hi from Spokane

I’m currently in Spokane, WA at an AirBnB with my sister Katy. We’re here for a memorial service for our grandma, which will be happening later today.

Fortunately I did ok with the side effects stuff yesterday, as we drove over here. The main thing I continue to experience is cold sensitivity, so I’m minimizing time outside and making sure to bundle up.

Yesterday was a great day of 1:1 time with my sis. Bright, sunny weather throughout the drive across Washington state; scads of trees looking lovely with yellowing leaves, about to drop.

We stopped at Lunchbox Cafe, in Ellensburg. So good! I was a little worried about eating outside (it was pretty cold) but the sun — along with incredibly delicious tomato soup — kept me nice and toasty.

In other news, I got a Facebook message yesterday that meant a lot to me. It was from a friend from college who saw my “I have cancer” Facebook post in August, in which I urged all my contacts to get screened, and consider some other advice to stay healthy. She said:

Hi Jonathan! I just wanted to share that I finally got proactive about scheduling a colonoscopy because of your journey….Because of you I finally took action into my own hands and called the clinic directly to schedule an exam. I had 5 polyps removed.”

I’m so very happy to get an update like this!

Lot of good discussion with Katy last night; I talked about what a challenge it has been to try and intermittently work during the chemo process. For example; Wed-Thur this past week — days that I worked — were more challenging than I had anticipated. Although not as bad, side effects were still popping up here and there, and I believe these were exacerbated by work stress. I need to further scale back from work during the upcoming final phase of chemo, and I’m thinking through what this will look like.

Chemo infusion #6

This round has hit me the hardest — particularly the last few days. Interestingly, the actual infusion day (last Thursday) was pretty uneventful. I felt surprisingly coherent as my friend Dorje gave me a ride home that afternoon. Pump disconnect day (Saturday) — which sometimes has been one of the more challenging days — also wasn’t too bad. The following Sunday and Monday, however — wow. Hard days, filled with periods of abject suffering: the typical mix of constantly-changing chemo effects (numbness, tingling, queasiness, sore throat) with some new elements: headaches, chest pain, and a weird extreme sore throat sensation that extended to my chest.

Cold sensitivity has increased, but that’s manageable and it’s the least of my worries. I have a system now where I always have a few glasses of water set out, so that they are at room temperature. Drinking water straight from the refrigerator is very unpleasant (feels like there are extremely cold shards of ice going down my throat). Also, I’m always wearing gloves when I head outside.

There’s a point where physical suffering is so extreme that you cannot distract yourself from it; it completely commands your attention and you’re just waiting for it to end. I was in that zone, over the last few days. Last night, I woke up at 1:30am and stayed awake through the remainder of the night. Lying down made things worse for me (I’ve had this before, a few times) — when I was lying down, the side effects were more extreme, especially with my throat (it felt like it was tightening). So, I couldn’t sleep until the side effects calmed down, which was 10 or 11am. It was a horrible night.

I know I have said this multiple times, but it strikes me how during these periods when I’m suffering through the effects of chemo, I do not feel like myself. My normal self is very planny, always striving, ticking through mental to-do lists. That self completely disappears, and is replaced with a zombie (as I often describe it) — prone to periods of staring, doing nothing. Also, certainly weirdly emotional. For example I read this article about Jenna Fischer and her experience with cancer, and that made me cry. I spend a lot of time just looking at art (in Facebook groups). I do not generally remember much of these days.

This afternoon, I believe I turned a corner for this cycle, and once again, started feeling like myself again. Still not 100%, but much better than the past few days. I am planning on returning to work tomorrow, unless I get hit with another sleepless night. My Mom recommended trying to sleep in a recliner (if I have more of the issues when I’m lying down); a good idea that I may try out tonight.

Only two more infusions to go! Next one is on Oct 31 … hmm, should I wear a costume?

It’s a vasovagal thing (maybe)

I am tired, but I feel like an update is overdue. Quickly tapping this out on my phone and I’m going to skip adding links.

With my last chemo infusion (number 5) the side effects definitely hit me for longer. The new thing was cold sensitivity in my hands, for example, there were several days where I wasn’t able to open the refrigerator without wearing gloves. (The freezer was out of the question). This is a normal side effect from one of the chemo drugs in my 4-drug mix: Oxaliplatin. I also noticed the numbness and tingling while walking around outside, when the weather didn’t feel particularly cold (mid-50s). Annoying. At this point, that’s gone and I’m back to normal. But it does have me wondering about the upcoming final 3 infusions — how bad will things get? I have started to set expectations at my work that I may need to be out for more days over the coming month — and possibly just fully take the time off, until chemo is done. The intermittent back-and-forth stuff is very confusing ….

My care team got me all excited, during the last infusion consult — they said all those Nivestym shots I give myself in the belly, they don’t seem to be working, so they were going to “graduate” me to a more effective shot, Neulasta, that they could give just once every pump disconnect day. I really hate giving myself the shots in my belly … really, really hate it. So … I was so excited to be done with all that. But my insurance provider sadly denied coverage for Neulasta. So now instead, I have to do yet another night (now 8 after each infusion) of the Nivestym shots. 24 more of those to go…. Argggh…

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Pics from the cancer walk

I had my 5th chemo infusion this past Thursday (just 3 more to go!). The side effects have been more pronounced with this one. This is expected, as chemo is a cumulative process. More fatigue, and more of the mysterious bodily anxiety. Also, notable cold sensitivity in my hands: currently I’m wearing gloves while using the refrigerator, and completely avoiding the freezer.

I’m actually struggling with side effects as I write this post, which surprised me — earlier this evening I thought (hoped) I was done with all this, for this cycle.

While this meant that unfortunately I wasn’t able to actually walk in Saturday’s Seattle Walk to End Colon Cancer, I did stop by the opening kickoff at Gas Works Park, and I’m glad I did. I saw Jessica there, along with Melody from my work:

And I was totally surprised to be honored with an award! Well, not me – my fundraising team – we got the rookie of the year award for fundraising.

Good job team!!

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Hooray for apples

A recent New York Times article highlighted the health benefits of apples — I wasn’t familiar with some of these:

  • Apples contain a lot of healthy bacteria — apparently more so than many other fruits and vegetables. When you eat an apple, “some of those bacteria may become part of your microbiome.” And these healthy bacteria are very important: they have a powerful impact on our health, affecting everything from cancer riskto weightto mood.”
  • Apples are rich in dietary fiber. This, I did know, but it’s a great reminder, as I’m all about fiber these days. Dietary fiber helps feed the aforementioned healthy bacteria.
  • Apples can help maintain healthy cholesterol levels, due to the all pectin in them.
  • Apples are good for blood pressure: “Certain polyphenols in apples, called flavonoids, are particularly good at stimulating the production of nitric oxide, a gas that flows through our blood vessels, causing them to dilate.”
  • Apples can reduce chronic inflammation.

Whoa!

It was just yesterday when I posted about my participation in the Seattle Walk to End Colon Cancer, and my fundraising goal for this event. In the past 24-odd hours, my team received a surge of donations and we surpassed my team goal by a healthy margin. Amazing!

Here’s what I sent out to the donors and team members earlier today:

My mind is totally blown by all the donations that came in, over the past 24 hours! We’ve blown way past my goal. Wow!

I’m touched, seriously, feeling the love and support from all of you — and I’ve got to call out, way to go, Lenati alumni network!!  All the lovely folks who I worked with at Lenati Consulting, back in the day have really been the driving force behind this recent wave of donations. Many have gone on to other ventures over the years, and there also many who have remained with Lenati, as it has evolved (now part of a much larger company, Concentrix). 

We are all part of multiple social circles, and this past day has me reflecting on the power, and the magic really, of these networks. Amazing. I am grateful.

If you scroll down in the Seattle Walk page, you’ll see my team is now in 3rd place for fundraising for this event; Natalie and Brianna are in the lead (with team names much more interesting than my own). They are the cancer survivors I met with earlier this year, both very inspirational. Brianna actually is the person who started the Seattle walk.

I’ve been reflecting on something they said to me in that conversation. They both noted that I’m unique — because there’s a notable lack of male team captains in this event — and in related cancer advocacy causes, in general. Seems to be mostly women leading the charge. On a similar note, in the Colontown forums (amazing resource for colorectal cancer patients and caregivers — highly recommended), I can’t help but notice all the posts from women, on behalf of a man in their life. Why? This is ridiculous. Why are men not capable of going into these types of forums themselves, and doing their own research? I very rarely see the converse (men posting in the forum on behalf of a woman). This is embarrassing. Dudes — let’s step it up. Stop being babies.