Having cancer

Everything else
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Tom, clearly the radiation is not effecting the writer part of you. That cut through the cynic in me this morning (bad day) and hit me right in the heart.

This may be cliche’, but what do I know, a recommendation from a good friend with cancer: a very, very good friend of mine, who also happens to be in my labs here, had prostate cancer some years ago. They took out his prostate, but then 2 years ago he walked in my office, said he had just returned from Mayo (it’s only about 3 hours or so from here, so everyone goes there for serious issues) and they had told him they were very sorry to tell him it was back. My friend told me he would need to take time to go to Mayo on a regular basis and likely would be in what he called a “Chemo haze” for about a week when he got back, so he’d need to do paper work and not lab work during that time. Being somewhat slow I didn’t “get” that what he had was metastatic prostate cancer until a couple of weeks after he told me, and that there is no cure, and all the articles say best case is 2-5 years. When I read that on a Saturday morning it was like someone kicked me in the balls. Somehow, today, two years later, you could not tell his situation if you didn’t know it. Most people in the company don’t know.

I told him, over lunch last week, about your situation. He immediately said, tell Tom if he hasn’t read it that he might read a book called Wherever You Go, There You Are by Jon Kabat-Zinn.

http://www.amazon.com/Wherever-You-There-Are-Mindfulness-ebook/dp/B0037B6QSY/ref=sr_1_1?s=books&ie=UTF8&qid=1412771832&sr=1-1&keywords=wherever+you+go+there+you+are

It is apparently “The” book on Mindfulness Meditation. My friend said he always thought of meditation as hippies sitting in a lotus position humming “ommmmmm” but his oncologist at Mayo recommended the book. I recently read it myself, and it is really a great book for just living in the moment, not necessarily getting rid of the waves in the ocean of your brain but learning to surf them rather than let them drown you. Terrible description, sorry. But apparently it is a very recommended book by the oncologists at Mayo. For my friend, he said it helps him a lot dealing with the reality of what is coming very soon; he said for non-terminal cancer patients it is helpful in dealing with the treatments and all of the competing flock of thoughts that fight for your brain. He also said that the time when you’re in radiation or chemo therapy is a great time to practice the meditation exercises; he laughed and told me that making that time is a challenge, but for patients going through treatment you get the bonus of having that time on a regular basis.

I don’t have cancer, so I can’t vouch for how helpful it can be, but I’ll offer that because I promised my friend would. :)

Oh, in case it hasn’t been said recently: fuck cancer.

43

Keep fighting and keep writing, Tom.

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I read the book, and its helpful, but I found the talk he gave to google even better.

The key point is not to beat yourself up when your mind wanders, because it’s going to do that. Just gently correct yourself back.

The mindful meditation is fantastic for quieting your mind, when you find it racing and hard to sleep or concentrate.

45

Your story sounds quite a bit like mine, Tom. I have some questions for you if you don’t mind and I freely put myself out there for you if you’d like to ask me anything more about my experience.

A tumor in the base of my tongue was found to be cancerous earlier this year. During the summer, concluding four weeks ago in fact, I underwent treatment similar to what you’re describing. It wasn’t the ‘donut’ Tomos administering rads but IMRT. I wore a similar mesh mask for 35 (5x7weeks) treatments. I also had two courses of chemotherapy (Cisplatin) at the beginning of week 1 and 4.

Here is a video of what the IMRT treatment looks like (no, it’s not me).

Here is an article about the masks which someone referenced earlier. (I told them I never wanted to see mine again when offered it.)

Here is my CaringBridge site, still a work in progress but all of the treatment documentation is in there. I think you should be able to view it but let me know if you need an invite by DMing me your email address.

My questions for you are these. Are you also being given Chemotherapy? Concurrently? Where is your main tumor specifically and how is it being categorized? And I do understand if you’re not comfortable sharing such information in this setting.

In my case my base-of-the-tongue cancer was T4bN2M0… stage 4 size and bi-lateral, two nearby lymph nodes compromised, no metastasis. Also the cause of the cancer is known to be from Human Papilloma Virus; specifically HPV16+. (Mostly HPV is pretty harmless but type 16 is one of the nastier, cancer-causing strains.)

46

Tom, I’m incredibly moved that you are sharing your story with all of us. The fact that you have taken the time and effort to put this down in the forum for all to see is moving.

You will be in my thoughts and I appreciate your openness.

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This is what separates “it’ll kill ya” throat cancer from “we can cure this” throat cancer. HPV is super susceptible to radiation and a few rounds of chemo. HPV-related oral cancers are on the rise, especially among younger folks (40s+). Here’s an infographic Mount Sinai published in 2011, which I stole from the blog Caregiving for Throat Cancer:

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Thanks for sharing, Tom. That was really moving to read and incredibly well written.

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Holy shit, I had no idea! It’s been some time that I haven’t visited the site, and the first thing I notice is Tom’s absence from the front page. Then I see what’s going on, and spend the next minutes crying… I just couldn’t believe it, and felt so overwhelmed because this person I enjoy reading so much is going through this :(

Tom, I wish you the very best, I wish for you to get better soon, I wish wish for you to get to be a hundred years old!

And now I’m feeling tears again :(

Please get well Tom!

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Sharaleo and Scott – and from more of an implied perspective – such heartbreaking stories. Thanks for sharing those. Sharaleo, I remember your story specifically when I was coming to grips in the early days that this was cancer and not just a virus or infection. I was terrified it was going to be something dire and sudden like what happened to your mother.

Dave, Kemper, and Mr. Peach, I’m glad to hear you’re all faring well. Mr. Peach, we should definitely swap war stories as we’re in almost the same boat. My cancer is down lower in the pharynx, around a lot of delicate machinery involving speech and the all-crucial valve that determines whether something goes to your lungs or your digestive system. It’s a rare place to get cancer and in the absence of a lot of treatment data, they hit it with a higher dose of radiation, which does more damage. My course of treatment is also seven weeks, but I get three Cisplatin treatments, on weeks 1, 4, and 7. In fact, I’m sitting here right now about half way through my second chemo treatment, listening to the little pump chug away, administering the final bag of fluid. The chemo takes at least seven hours, mainly to pump my system with fluids that will flush the toxin from my kidneys. I’m on a nice hospital bed, I could watch TV if I want, I have a book and some movies on my MacBook, I have a PS Vita fully charged and loaded with pinball tables, but most importantly I have my friends Christien and Alexandra here, each perfectly willing to let me feel grumpy and sullen if I need to. The next three days will suck, of course.

My main struggle at this point is eating, which is important to keeping my weight up, because if I lose much more weight, I’ll get fitted with a ghastly G-tube that pumps nutrients directly into my gut, like Robocop. I’d like to avoid that, but I’m having such a hard time swallowing.

Oh, and to compare maladies, my cancer is stage four T3N2cMx. T3 is the size of the tumor. I believe N2c indicates that it’s bilateral, affecting lymph nodes on both sides of the neck (I was told it was five nodes, but I don’t see that indicated). Mx means it hasn’t metastisized to any other part of my body. It began as a squamous carcinoma on the surface of the hypopharynx that has spread to the supporting structures of larynx and the lymph nodes. I’m not a smoker, and I don’t drink, so the p16 revealed in the biopsy, I believe that’s the marker for HPV, implies this is from HPV.

Also, today was “hump” day for my radiation treatments. I just had #18 out of 35, which means I’m more than half way done.

-Tom
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I just want to echo was Christien wrote and thank you for posting this, Peter. One of the most vivid memories I’ll come away with is the young woman who was a pharmacist who sat down with me after my chemo had been set up. She went over all the drugs that would be used in chemo, and the drugs that would be used to treat the side effects, and then she said with a sudden burst of passion, “We’re going to cure you. I don’t get to say this to most of my patients. I’m saying it to you now.”

I didn’t know if she was just blowing smoke at me, or why she would be so vehement to tell me that. Surely she didn’t mean “most” of her patients. Surely she’s not spending her time just containing tumors or comforting patients with untreatable cancer. Surely there’s not that much hopelessness here. Surely it’s not all that bad in 2014. But maybe it is. At any rate, your post, Peter, shed a little light on her state of mind.

-Tom
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Well all right! I hope it’s slaughtering the bad cells by the billions and that your current difficulties are a temporary annoyance, a small percentage of a long future life. And Tom, the offer Terri and I sent you in our PM to you stands. Contact us if you need anything, although it sounds like you have plenty of support on hand.

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MRIs are the worst, aren’t they? When I had mine, they put my head in a bracket, put foam inserts on either side of my head to hold it still, and then one on my throat to keep my chin up. They slid me into a tiny torpedo tube where my face was maybe six inches from the inside wall, at least what I could see if it through the bracket. And it took 50 minutes. That one was a nightmare, and I think the only way I made it through was by keeping my eyes closed and not having a mesh mask over my face.

By the way, I’m the total zen master with the mesh mask now. It’s a little disconcerting, but there’s no voice telling me I really really need to move my head. I can wear that thing till the cows come home.

-Tom
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Much of what I’ve read in this thread makes me very thankful that my particular brush with cancer was of the early-detection variety. Mine was testicular cancer which I spotted myself when I noticed a lump, and my doctors put together a speedy plan to deal with it. I still had to go through an operation and radiation therapy, but I missed the worst of the chemo and really heavy radiation stuff. After about five years, the doctors gave me a clean bill of health. It’s not often you can find anything to be thankful for involving cancer, so I’ll take what I can get. I do have super-high risk of an additional encounter, thanks in large part to family history, but enough screening will hopefully allow any further problems to also be detected early.

I guess the point of saying all this is as a word to those who aren’t yet dealing with any cancer issues themselves: it’s well worth your while to get anything out of the ordinary…lumps, weird moles, strange recurring sickness, whatever…checked out by the professionals right away, and to know your risk factors and get the appropriate screening. You can feel perfectly healthy for a long time…I never felt sick at all prior to my surgery…while those cancer cell bastards are busy digging in and spreading around your system. Almost all of it can be treated, though, if you know it’s there soon enough.

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I used to be pretty good with claustrophobia causing scenarios, I believe, but I am not so sure how well I would do with an MRI right now as it seems to bother me a lot more as I get older. My wife tells me the machine at the facility near us has a TV built into it, though, and that helped her get through hers years ago. I can’t remember whether they were those goggles or not, but that sure is a nice feature it sounds like.

Some pretty powerful stories and writing in here. I am sort of at a loss for words right now, but wanted to share that they are indeed making an impact and many of you are in my thoughts.

Hang in there, Tom! Speaking of fan clubs, I may wear my TvB T-shirt tomorrow on my day off to keep you in my thoughts.

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Tom, I think most of your friends here who haven’t had cancer or some relevant experience to share with you feel inadequate; we want to say something to make you feel better or help you through this, and just have no idea what to say.

So I guess I’ll just say, FWIW, you have an entire community of people (even the guys over on BF, ;) ) who are keeping you in their daily thoughts, prayers, positive energy, good ju-ju or whatever.

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Tom -

War stories indeed. Yes, it does sound like a very similar diagnosis, location and course of treatment. And yes I do believe that P16 implies HPV+ as the cause which is very good news… if you have to get a cancerous tumor, I mean.

I don’t know what you’ve been told about difficulty eating (caused by the effects of the radiation inside the throat - described as having a severe sunburn on the inside; you lose all your skin and grow it anew) and the pros and cons of the G-tube, or how many doctors and patients you’ve discussed it with. I can tell you that I’ve found it is by far the most contentious matter among those suffering this problem during the treatment. I’ve talked with some who said avoid the G-tube at all costs and that you don’t need it, others who eschewed the G-tube and afterward wished they hadn’t, etc. etc. For myself I opted for the G-tube and I don’t think I could have coped without it. The pain in the throat (like shards of broken glass grinding) was so bad for so many weeks I just don’t think I could have kept enough calories coming in to avoid hospitalization or worse. As it was I lost 40 lbs during treatment going from 215 (and easily 25 lbs overweight) to 175 now. But after the pain began to lessen I experimented with swallowing liquids again and soon I found I could ingest shakes and smoothies. I still can’t taste anything but the pain isn’t anything like it was before; only a dim reflection of it. The tube came out on Monday at which point I hadn’t used it in over 3 weeks. Remember, just because you have a G-tube doesn’t mean you have to use it. It wasn’t all that hard to take care of I found.

How are you doing with mucositis? As much as the throat/pain when it was the worst, having rampant, non-stop drool was a total pain in the ass, too. It, too, has finally gotten better but has not gone away completely. Wish I had some advice here but none of the tips or tricks doctors and other patients gave me seemed to help so I just spit and bear it. Lately at least I’ve been able to get an hour or two of uninterrupted sleep between gagging on my own saliva. Horrible stuff.

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wow. a great post Tom–please keep writing. I enjoy pretty much everything you write, even when you stray into board games territory, ha ha. I don’t always venture into the forums on Qt3 because it’s overwhelming with huge numbers of posters. I am glad I happened into the “everything else” today though. But rest assured that you have a huge fan community that enjoys reading your stuff and wishes you well. here’s a little story from me:

my dad was a radiation oncologist, and so I used to go to work with him some times. I was fascinated by the treatment rooms because I was told that if there were a nuclear war, these would be the last rooms standing (foot-thick walls, lead lined, steel reinforced concrete, adamantium, etc.). But, these rooms always had a thin wooden door (around a lead-lined corner from the linear accelerator) and an angled pipe through the wall to equalize pressure. So I guess not totally safe inside from the outside if something big happened outside in the real world.

This was also where I first got to play computer games, and to spend time with a computer. The one I could play with featured dual 8 inch floppy drives, had a plotter printer, and some other stuff (they would kick me off when they needed to do something with the machine, usually planning treatments based on an x-ray and a light pen). The game I remember playing was “Adventure”, which was a text adventure that strongly resembled the later Zork I game from Infocom (xyzzy). I can still remember how it smelled in that computer room, playing that game. There might have been a star trek type game but I always preferred the text adventure. It was an oasis from bullying, divorced parents, unsympathetic fourth grade teachers, etc. It’s probably very unusual, but for me that place was relatively safe and happy, and it meant computer games!

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Mr. Peach, it’s been a month and you still don’t have your taste back? Egad. I miss the taste of so many things. The weird thing is that stuff still smells good. But once it’s in my mouth, it’s almost always a flavorless mass. I’m basically eating textures. I really miss coffee. I figure my system is getting inundated with so many stimulants, and drugs, and certainly more sugar that I like to eat because sugar stuff gets me calories, that I don’t really need caffeine. But once I’m not taking medication and I can actually taste it, I’m going to have myself one hell of an espresso!

So the thinking about the G-tube is that if I lose ten percent of my body weight, it becomes a recommended thing. I was 180 when I went in three weeks ago and now I’m at 169. I have a bit more of a margin, but it’s going to take some serious commitment to maintain my weight, especially since things are going to be more difficult over the next several weeks. At this point, I haven’t thrown in the towel. I simply don’t want another procedure done, and I certainly don’t want to feed nutrients directly into my intestines. But the odds are against me and the last half is definitely going to be more trying than the first half.

And, yeah, the gross situation with mucous and saliva is another major issue. I’m spitting left and right like a baseball player and the build-up definitely wakes me every few hours at night. Was your voice affected? Mine is pretty seriously impacted right now, but they’re unsure whether it’s going to get worse.

-Tom
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That’s awesome. I should set up my Steam account on one of their machines in case I need to kill some time!

-Tom

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My Dad had a G-tube put in over a year ago when he was having some pneumonia-related swallowing issues. He didn’t like the idea at first (he thought it was dehumanizing and was sick of spending time in hospitals), but it probably saved his life and wasn’t a big deal once it was in. It’s out now and all is well. If you need one, don’t dread the experience.