Well, I HAD cancer.

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Re: Well, I have cancer.

Post by $iljanus »

I'm happy to hear that the energy level is coming back. I'm also happy that the kids are going to be back in the house on a more regular basis. From reading your earlier post they'll be good motivators for you to get back to a normal routine.
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Well, I have cancer.

Post by Zarathud »

The bravest part is getting the kids back. My kids would take the opportunity to run like crazed weasels if I couldn't raise my voice at them. And they're only 5 and 7!!
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Re: Well, I have cancer.

Post by Blackhawk »

Bad Demographic wrote:Still - HUGE HUGE Improvement. I recall this thread starting with % chance of not surviving.
Unfortunately, those percentages haven't changed. I'm still a month and a half from getting PET scans to see how the cancer reacted to the treatment. I just think about that potential a lot less now that the shock has worn off.
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Re: Well, I have cancer.

Post by Baroquen »

Blackhawk - I've been reading this thread since the start. And I just want to say that I've just been so impressed (really, in awe) by how you've handled every difficulty thrown your way. I'm so happy to hear about the progress you made. Best wishes as you continue healing and with your returned to "normalcy".
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Re: Well, I have cancer.

Post by stessier »

How goes the healing after 2 more weeks?
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Re: Well, I have cancer.

Post by Blackhawk »

stessier wrote:How goes the healing after 2 more weeks?
Everything seems back to normal (save for the permanent stuff) outside of my mouth. No nausea, no vomiting in probably three weeks, energy is fine and so on.

My throat isn't nearly as tight as it was a couple of weeks ago. I can swallow pills normally again without having to powder them.

The left side of my tongue is pretty much healed. The right side still has a section about an inch long that is so-so in the morning, but raw and bleeding by nighttime. That's not so bad - a week ago that inch was the full length of the tongue. Another week, maybe two, and it will be healed. At that point I'll be able to eat normally again - the tongue is the only thing holding me back. Moving it around to chew is very painful.

That said, yesterday I was at my former mother-in-law's house and she offered me a bowl of chili. Her chili is basically tomato soup with some hamburger and beans in it - zero spice, and cooked to the point of mushiness. I said 'what the hell' and gave it a try. I was only able to eat a half a dozen small bites due to the pain in my tongue, but otherwise didn't have any real trouble eating and swallowing them. The best part was that I could taste it. Not a lot, but enough to identify what I was eating, which was fantastic.

Of course, returning to eating in another week or two likely won't be an overnight thing. I'll likely have to start with a soft diet for a while - mashed potatoes, soups, and so on. To begin with, it'll be more like supplementing my liquid calories with a side dish or two. After that, I'll likely be supplementing my food with some liquid calories. I'll be able to add in more solid foods gradually, and will eventually reach a point where my diet is back to normal. I've no idea how long all of that will take, but it shouldn't be too long - this is weeks, not months.

Of course, I also have to be careful with my digestive system. After what will be close to three months without solid food, I can't expect it to get back up to speed overnight, either.
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Re: Well, I have cancer.

Post by $iljanus »

Great news on being able to taste things which is something that many people that haven't undergone what you have take for granted.
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Re: Well, I have cancer.

Post by Zaxxon »

Excellent news.
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Re: Well, I have cancer.

Post by Rip »

I am from Indiana and that is the chili I remember my grandmother making. Loved it and miss it very much!

Does she put a small amount of spaghetti noodles in it? That is about the only thing you mentioned that my grandmother didn't do, well that and she put some chili pepper in it but most people don't call that spicy.
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Re: Well, I have cancer.

Post by Blackhawk »

Macaroni, but she serves it separately, so it is optional. I generally don't use it.

I grew up on thick chili, so the watery soup stuff from around here doesn't really appeal to me much.
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Re: Well, I have cancer.

Post by Daehawk »

Great to hear BH! Im sure theres way more to it from what we hear but you seem to be damn tough BH.
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Re: Well, I have cancer.

Post by hitbyambulance »

Blackhawk wrote: Everything seems back to normal (save for the permanent stuff) outside of my mouth.
what is the 'permanent stuff'?
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Re: Well, I have cancer.

Post by Carpet_pissr »

Excellent news on the taste buds, sir....was concerned those would be toast, permanently.
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Re: Well, I have cancer.

Post by Smoove_B »

Yeah, that's good to hear. How's your weight?
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Re: Well, I have cancer.

Post by Z-Corn »

I can imagine the health of your gut has suffered. Would probiotics help as you get back to solid food?
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Re: Well, I have cancer.

Post by Blackhawk »

Z-Corn wrote:I can imagine the health of your gut has suffered. Would probiotics help as you get back to solid food?
I'm a regular yogurt eater anyway, which will resume shortly. The main thing is just letting my digestive system start back up at its own pace. I made that mistake after recovering from the initial surgeries - about three weeks out, I started on full meals. It created chaos in my guts.
Smoove_B wrote:Yeah, that's good to hear. How's your weight?
Holding steady. Total loss ~45-50 pounds.
hitbyambulance wrote:
Blackhawk wrote: Everything seems back to normal (save for the permanent stuff) outside of my mouth.
what is the 'permanent stuff'?
Thickened saliva. It has improved, but will likely never go back to where it was. My sense of taste is probably in the same category.

Weakness and reduced range of motion in my left arm and shoulder. They cut out muscle and severed nerves during the surgery. My left arm is a weak when doing things in the front. Trying to raise it to the side, however - I can't lift it past the shoulder (horizontal) at all, and a lot of the time it won't go past 45 degrees. I can't really use it for carrying much weight - no more bringing all the groceries up the stairs in one trip. Forget any sports that require my left arm (I always enjoyed archery - that's out.) That sort of thing.

Mild pain. My left shoulder aches. It isn't 'ow!' pain, just a dull ache. I can't hang things (say, a duffel bag) on it. Add in a constant stiffness in my neck.

Numbness. From the top of my left ear, down through my jawline, across most of the left side of my neck, and parts of my left shoulder there is zero feeling. I have areas I could stick pins and not know it. Again, severed nerves.
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Re: Well, I have cancer.

Post by AWS260 »

Z-Corn wrote:I can imagine the health of your gut has suffered. Would probiotics help as you get back to solid food?
If you need a fecal transplant, we're all here to help.
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Re: Well, I have cancer.

Post by $iljanus »

Blackhawk wrote: Weakness and reduced range of motion in my left arm and shoulder. They cut out muscle and severed nerves during the surgery. My left arm is a weak when doing things in the front. Trying to raise it to the side, however - I can't lift it past the shoulder (horizontal) at all, and a lot of the time it won't go past 45 degrees. I can't really use it for carrying much weight - no more bringing all the groceries up the stairs in one trip. Forget any sports that require my left arm (I always enjoyed archery - that's out.) That sort of thing.
Has any doctor/nurse practitioner/etc suggested any exercises for your left arm that you can do to either build up some strength or at least keep it from atrophying?
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Re: Well, I have cancer.

Post by Blackhawk »

$iljanus wrote:
Blackhawk wrote: Weakness and reduced range of motion in my left arm and shoulder. They cut out muscle and severed nerves during the surgery. My left arm is a weak when doing things in the front. Trying to raise it to the side, however - I can't lift it past the shoulder (horizontal) at all, and a lot of the time it won't go past 45 degrees. I can't really use it for carrying much weight - no more bringing all the groceries up the stairs in one trip. Forget any sports that require my left arm (I always enjoyed archery - that's out.) That sort of thing.
Has any doctor/nurse practitioner/etc suggested any exercises for your left arm that you can do to either build up some strength or at least keep it from atrophying?
Hell, no. They didn't give me any suggestions for avoiding stiffened jaw, lymphodema, or fibrosis, either.

Which is why I researched all those things on my own. Screw those guys.
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Re: Well, I have cancer.

Post by $iljanus »

Blackhawk wrote:
$iljanus wrote:
Blackhawk wrote: Weakness and reduced range of motion in my left arm and shoulder. They cut out muscle and severed nerves during the surgery. My left arm is a weak when doing things in the front. Trying to raise it to the side, however - I can't lift it past the shoulder (horizontal) at all, and a lot of the time it won't go past 45 degrees. I can't really use it for carrying much weight - no more bringing all the groceries up the stairs in one trip. Forget any sports that require my left arm (I always enjoyed archery - that's out.) That sort of thing.
Has any doctor/nurse practitioner/etc suggested any exercises for your left arm that you can do to either build up some strength or at least keep it from atrophying?
Hell, no. They didn't give me any suggestions for avoiding stiffened jaw, lymphodema, or fibrosis, either.

Which is why I researched all those things on my own. Screw those guys.
Yeah they suck. Wife is out of town but perhaps when she gets back she can touch base with some physical therapists who can give suggestions and if they're different perhaps you can add that to anything you've come up with on your own. At my church there's a oncology surgeon who works across the street at Bethesda Naval and if I see him on Sunday I can ask him about PT options you can do at home.
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Re: Well, I have cancer.

Post by Blackhawk »

Oops, forgot a permanent (probably) side effect: I can't grow any hair between my mouth level and my shoulders. I may (may) eventually get back a goatee, but it isn't certain, and it isn't certain whether what grows back will be presentable (it could be patchy, or curly instead of straight, or a different color.) The hair on the sides of my face is permanently kaput, though. The closest I can grow to a beard is pointy, near perfect triangles of sideburns from my ear to the corner of my mouth. Angleburns (look for me on Community next fall.)

I'm not too worried about it, though. I don't grow a beard that often, and other than the triangles, I no longer need to shave. At all (including the back of my neck.)
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Re: Well, I have cancer.

Post by Blackhawk »

I ate dinner.

:horse:
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Re: Well, I have cancer.

Post by AWS260 »

Wunderbar.
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Re: Well, I have cancer.

Post by Smoove_B »

What was the celebratory meal??
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Re: Well, I have cancer.

Post by Blackhawk »

The celebratory meal will come when it isn't still painful to eat. When it doesn't take me 30 minutes to down a ten minute meal. Today's meal was just a Cup Noodles. I had it lying around, it took no effort to make, and it was soft and easy to swallow.

Still, it A) had flavor and B) was food.
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Re: Well, I have cancer.

Post by Zaxxon »

Have you decided what the eventual celebratory meal will be?
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Re: Well, I have cancer.

Post by Smoove_B »

Hey, don't downplay eating a cup of noodles. That's a big deal and still cause for celebration in my book.
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Re: Well, I have cancer.

Post by Bad Demographic »

After all this time, it probably tasted great. (or so I hope)
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Re: Well, I have cancer.

Post by Blackhawk »

Bad Demographic wrote:After all this time, it probably tasted great. (or so I hope)
They tasted great, and they tasted weird. My tongue hasn't had to do any of that pesky 'tasting' for a long, long time (about two and a half months.) Having flavors in there was just... odd.
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Re: Well, I have cancer.

Post by Blackhawk »

Quick update (it's late.)

It's been a week since that first bit of food. I spent the last several months drinking three 530 calorie 'meal replacement' shakes per day. After my last post, I decided to try dropping that down to two and seeing if I could make up the extra 500 in actual food.

The last couple of days, I've been down to one shake. Tonight was fried chicken and macaroni salad. The other day I pulled off a salad. My tongue isn't perfect. It is still so sensitive that ketchup feels like tobasco, just from the acid in the tomatoes. Chewing is still slow - I've gone from being the first one finished with every meal to the last. It is still tiring. An amount most people would call a side dish and I have to take a rest. My mouth is still very dry. Anything not wet has to be swallowed with a sip of water to make up for the missing saliva. It's like every mouthful is swallowing a pill.

But still - I'm eating. Not only that, but I seem to have retained most of my sense of taste. I haven't come across anything that didn't have flavor, or that tasted off.
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Re: Well, I have cancer.

Post by Blackhawk »

Oh, and I can talk understandably enough (and long enough) that I've made the last two sessions of my old pen & paper RPG group.

I've got the kids back, almost to the point that I had them before. In another week or two, I'll be back at a full kid schedule. The speaking was the main factor I had to overcome there. I have to be able to make myself understood explaining algebra to a ten year old, or problems will ensue.
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Re: Well, I have cancer.

Post by AWS260 »

That's awesome, BH.
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Re: Well, I have cancer.

Post by stessier »

Great update!
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Re: Well, I have cancer.

Post by Odin »

Such great news!! Both your progress and your positivity during this whole ordeal are inspiring.
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Re: Well, I have cancer.

Post by Scuzz »

Nice to hear that you are eating real food.

Have you "bit your tongue" yet?
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Re: Well, I have cancer.

Post by Blackhawk »

First, the good news.

I'm mostly-normal again. I can eat almost normally. I have to have water for dry or grainy foods, and can't eat anything even remotely spicy (ketchup still burns like a mouth full of Sriracha.) My arm and neck ache and still don't work quite right, but the shaking has stopped. I can speak almost-normally. I don't have quite the range I used to, and sometimes sound a bit nasally, but other than that, I'm fine to yap for hours.

Finally, the good news.

I had a PET scan on Monday, and got the results this afternoon. I'm clear. No sign of cancer. I do have a couple of lymph nodes that are slightly 'active', but there is no sign that they are malignant, so it is probably just some other minor infection they're dealing with.

I'm past the 'Oh shit', I'm past the 'will this work?', I'm past the 'did it work?' All I have left is the 'will it come back?'
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Re: Well, I have cancer.

Post by RMC »

Blackhawk wrote:First, the good news.

I'm mostly-normal again. I can eat almost normally. I have to have water for dry or grainy foods, and can't eat anything even remotely spicy (ketchup still burns like a mouth full of Sriracha.) My arm and neck ache and still don't work quite right, but the shaking has stopped. I can speak almost-normally. I don't have quite the range I used to, and sometimes sound a bit nasally, but other than that, I'm fine to yap for hours.

Finally, the good news.

I had a PET scan on Monday, and got the results this afternoon. I'm clear. No sign of cancer. I do have a couple of lymph nodes that are slightly 'active', but there is no sign that they are malignant, so it is probably just some other minor infection they're dealing with.

I'm past the 'Oh shit', I'm past the 'will this work?', I'm past the 'did it work?' All I have left is the 'will it come back?'
Great! Glad that you came through this. Hope you continue to get stronger!
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Re: Well, I have cancer.

Post by Archinerd »

Excellent!
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Re: Well, I have cancer.

Post by miltonite »

Woot. Way to go on kicking cancer's ass!
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