The Cancer Diaries

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The Cancer Diaries

Postby Manders » Sat May 11, 2013 5:52 pm

As many of you know, my mother-in-law is battling cancer, and I'm one of her supporters. So, I decided to create a thread for me to recount her battle. Posts of support, tasteful humor, and/or anecdotes of your own are welcome, but be warned. Any disrespectful remarks or distasteful humor will result in the poster being asked to leave. This is a serious subject, but not too serious, I hope, because laughter is the best medicine.

Now, enough with that malarkey. I'll get it started.

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This is Mom and myself. Mom and I met 15 years ago when I became friends with her son, and I've called her Mom ever since. I never had a mom, so other than my grandmother, she's the only Mom I ever had. We found out earlier this year that she has
Mantle Cell Lymphoma
, one of the rarest, most aggressive forms of Lymphoma. Prognosis for someone with this disease is not good, to say the least.

Her treatment option, as she only had one presented to her, was to begin chemotherapy immediately. For 6 months, she'll spend 5-6 days admitted in the hospital, getting 8 treatments over that time period. The final treatment lasts for a continuous 24 hours. Then, she is at home for 3 weeks, but she has to go in for labs and other appointments throughout. Then, she starts the cycle again. She got admitted yesterday for her second round of chemo.

While she was home, the level of her health varied from day to day. Some days, she seems as good as she ever has. Some days, she's in a little pain, but overall ok. Then there are days where she doesn't want to get out of bed. One thing that, luckily, seems to stay constant is her appetite. She's been eating very well, and those of us around her see this as a very good sign. Every time she goes in
for labs, they tell her that her white blood count is rising and looking good, so that's wonderful news. This all started with an enlarged spleen, which is still enlarged, though not as big as it was, and will probably come out after she completes the 6 months of chemo.

For now, all we can do is take it a day at a time, and enjoy every minute we have with her.
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Postby Yannaria » Sat May 11, 2013 11:08 pm

Best of luck to you and your family Manders.
Dealing with a family member with a terminal illness is awful. Enjoy your time with them and try to keep it upbeat.

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Postby Manders » Sun May 12, 2013 1:36 am

Thanks, Yannus! I certainly will enjoy every precious moment.
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Postby Manders » Tue May 14, 2013 11:03 pm

Well, Mom came home from the hospital last night. She's doing quite well. I cooked her breakfast this morning. I noticed that she's got some bald spots in her buzz cut, so the hair loss has started. She is in good spirits about it, though. Said, "That's just that less hair I have to shave next time, haha." Everyday I am amazed at her attitude about this entire situation. I mean, I always knew she was strong, but I never imagined HOW strong she truly is. I am in awe of her.
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Postby Yannaria » Wed May 15, 2013 11:02 am

Your mother and your family are in my thoughts Manders. It's fantastic that she's in good spirits during an agonizing ordeal like this... I wish the best that it stays that way.
I hope she isn't any type of pain and if she is that it is tolerable.

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Postby Manders » Wed May 15, 2013 3:09 pm

She does have a bit of abdominal pain most of the time, but she's been used to that for a long time due to having severe acid reflux. The pain she does have is usually tolerable.

Btw, I am totes not surprised you're the one who cares the most, Yannus. :hug:

Edit: Well, enough to follow this and give words of support. I know Clicky cares, too.
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Postby Iso » Wed May 15, 2013 3:31 pm

Send my regards, and best of luck. :)
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Postby Manders » Wed May 15, 2013 3:43 pm

Done and thanks! :D

Mom still remembers you, even if it is as Seppel's brother, haha.
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Postby Yannaria » Wed May 15, 2013 9:00 pm

how could you forget those two with the last name they have?

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Postby Manders » Thu May 16, 2013 2:56 am

Mom's only met Seppel once, and she never was told his last name.
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Postby Yannaria » Thu May 16, 2013 1:28 pm

Seps is pretty memorable...

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Postby Manders » Fri May 17, 2013 2:32 am

You've never met him IRL. You have no idea how right you are, haha.
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Postby Manders » Sun May 19, 2013 1:54 am

Proof that life continues after cancer, Mom and Pop (her boyfriend) went fishing last night and caught a ton of fish. This is something they've enjoyed doing together for the entire 2 years they've been together, and they're still enjoying it.

And, yes, she is a fish catching maniac, guys. She always catches at least one, and she always catches more than he does, haha.

We'll be having delicious fresh catfish for dinner tonight!
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Postby Checkbox » Wed May 22, 2013 2:59 pm

I'm glad to hear it, and hope everything goes well for you guys.
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Postby Manders » Wed May 22, 2013 3:27 pm

Thanks, Checkbox. We did have some delicious fresh catfish that night.

Yesterday was an exceptionally rough day. Sometime Monday, Mom developed an abscessed tooth. The right side of her face is badly swollen, and her whole mouth hurts. She was also running a fever, which she was told to go directly to the ER if that happens, so Tuesday morning, Mom and I rode to the hospital in an ambulance. Her lab work showed that all of her blood counts are low, but the terrible news is that her platelets, which are what fights disease and infection, are so low that they didn't even come up in her lab results. So, she got admitted to the hospital. I haven't spoken to her today, but when I left, they were planning on giving her platelets and possibly a full blood transfusion, if one is required. They're pumping her full of antibiotics, and are planning to consult with oral surgeons about having the tooth removed. No clue how long she'll
be in the hospital for, but I do know that she is scared and if I could have stayed the night at the hospital with her, I would have.

I say she's scared...but she's not the only one. Oral surgery while undergoing chemo isn't the best option, but it's probably the only one she has. :(
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Postby Yannaria » Fri May 24, 2013 12:45 am

Jesus...
if chemo weren't hard enough.

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Postby Manders » Fri May 24, 2013 2:47 am

Tell me about it, man.

She's doing alright. Bored and lonely because none of us can afford the gas to go visit her, but she's alright.
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Postby Yannaria » Fri May 24, 2013 7:55 pm

There's always skype if she has a laptop.

If she likes watching TV or movies, you guys could all chip in for a netflix subscription.

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Postby Manders » Fri May 24, 2013 7:57 pm

I gave her the password to my NetFlix account. I think she keeps forgetting she has it. :p

It's irrelevant, though, because she got released today. She got home just before I left for work. :D
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Postby Yannaria » Fri May 24, 2013 11:13 pm

I gave her the password to my NetFlix account. I think she keeps forgetting she has it. :p

It's irrelevant, though, because she got released today. She got home just before I left for work. :D
awesome!
Here's a list of good TV shows on netflix, be sure to pass it to her if she likes comedy. They're all pretty raunchy.
The League
Arrested Development
Louie

Less raunchy
Psych

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Postby Manders » Sun May 26, 2013 4:59 pm

I'm familiar with both Arrested Development (yay, today!!) and Psych. Great shows.

I'll tell her about The League and Louie. She's usually a fan of raunchy. :D
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Postby Yannaria » Sun May 26, 2013 10:04 pm

I watched the first episode and it was pretty good.

The League is hilarious... if she's a fan of raunchy comedy, she'll probably enjoy it.

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Postby Checkbox » Thu May 30, 2013 3:21 pm

Arrested Development is badass. Parks and Recreation is another comedy I can highly recommend.

Louie is raunchy, and barely a comedy at times, but A+ Quality Television nonetheless.

The League is hit or miss for me... it really just fills a "background noise" requirement for me most of the time, though I have laughed out loud quite a few times at it.

As for the actual topic of the thread, I'm glad to hear she is home!
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Postby Stardust » Thu May 30, 2013 5:12 pm

I was thinking about you and your Mom yesterday after getting contacted about stem cell donation. I'm on a list of potential donors, and apparently am a good match with someone who needs a bone marrow transplant. They sent me a ton of info, and it was really interesting, but kind of terrifying reading it all. I guess lymphoma is probably not the type of cancer to be treated in this way, but the whole idea of getting chemotherapy to destroy your own body is just awful. I hope she's able to keep her spirits high and pull through this.
҉

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Postby Kaitscralt » Thu May 30, 2013 8:05 pm

you patronizing son of a bitch
Standard hobos who play budget garbage should be looked upon with suspicion.

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Postby Stardust » Thu May 30, 2013 8:11 pm

:eyebrow:

I hope you're being sarcastic. Her situations sucks, there's no way around that.
҉

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Postby Kaitscralt » Thu May 30, 2013 8:21 pm

I'm joking. I'm always joking.
Standard hobos who play budget garbage should be looked upon with suspicion.

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Postby Yannaria » Fri May 31, 2013 9:41 pm

I still need to sign up for the bone marrow registry as a donor.

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Postby Manders » Fri May 31, 2013 9:52 pm

I was thinking about you and your Mom yesterday after getting contacted about stem cell donation. I'm on a list of potential donors, and apparently am a good match with someone who needs a bone marrow transplant. They sent me a ton of info, and it was really interesting, but kind of terrifying reading it all. I guess lymphoma is probably not the type of cancer to be treated in this way, but the whole idea of getting chemotherapy to destroy your own body is just awful. I hope she's able to keep her spirits high and pull through this.
I'm not sure if bone marrow is a solution or not, actually. I should probably look into that.

I thank you for your thoughts and concerns. She's still doing remarkably well. She left to get admitted today just
a little bit ago, and she DIDN'T want to go, but she knows she has to.
you patronizing son of a bitch
:eyebrow:

I hope you're being sarcastic. Her situations sucks, there's no way around that.
I'm joking. I'm always joking.
Hehe, this just made me laugh.

k8, behave yourself! :p
I still need to sign up for the bone marrow registry as a donor.
I should probably look into that, too.
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Postby Yannaria » Fri May 31, 2013 9:55 pm

it's just a swab of your mouth iirc. the last time they held one at the local hospital I was too strung out to go.

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Postby Stardust » Fri May 31, 2013 10:05 pm

Don't know about the states, but in Canada you can sign up online. They send you a little package with instructions on how to swab yourself, then you send it back by mail. Super easy.

Now that I've been selected I'll have to do a bunch of other tests, of course, but the sign up was a piece of cake.


Manders, she's being admitted today for another round of chemo? Good luck to her.
҉

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Postby Yannaria » Fri May 31, 2013 10:06 pm

Don't know about the states, but in Canada you can sign up online. They send you a little package with instructions on how to swab yourself, then you send it back by mail. Super easy.

Now that I've been selected I'll have to do a bunch of other tests, of course, but the sign up was a piece of cake.


Manders, she's being admitted today for another round of chemo? Good luck to her.
they end up filtering your blood then extracting the marrow, right?

I hear the best part of chemo is the morphine.

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Postby Stardust » Fri May 31, 2013 10:17 pm

When you actually donate bone marrow? No, they stick a needle into the back of your pelvis (in a few locations) and extract the marrow directly. No filtering as far as I'm aware.

There is actually a second way to get stem cells that I wasn't aware of. They dose you up with a drug for a few days to encourage stem cells to reproduce more quickly, then you have enough just floating around in your blood that they can get a good sample that way. "Peripheral blood stem cell transplantation" is what that's called. Much easier on the donor since they just have to sit there attached to a machine for a few hours while it sucks your blood, takes the stem cells, then gives the rest back (like a plasma or platelet donation). No anesthetics needed either.

Not sure why marrow transplantation is needed anymore, but there must be some advantage since it is still done. That's one of the many questions I'll be asking when
they follow up in a couple days.
҉

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Postby Yannaria » Fri May 31, 2013 10:23 pm

When you actually donate bone marrow? No, they stick a needle into the back of your pelvis (in a few locations) and extract the marrow directly. No filtering as far as I'm aware.

There is actually a second way to get stem cells that I wasn't aware of. They dose you up with a drug for a few days to encourage stem cells to reproduce more quickly, then you have enough just floating around in your blood that they can get a good sample that way. "Peripheral blood stem cell transplantation" is what that's called. Much easier on the donor since they just have to sit there attached to a machine for a few hours while it sucks your blood, takes the stem cells, then gives the rest back (like a plasma or platelet donation). No anesthetics needed either.

Not
sure why marrow transplantation is needed anymore, but there must be some advantage since it is still done. That's one of the many questions I'll be asking when they follow up in a couple days.
That is the process about which I have heard.
my sister had bone marrow sampled for something when she was in college and said it hurt like a mother fucker even with IV painkillers. That said, it is certainly worth it to potentially save someone's life.

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Postby Stardust » Fri May 31, 2013 10:32 pm

Yeah. If I do end up being the best match, I'm hoping they don't have to go get the marrow directly. I'll do it either way, but geez!
҉

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Postby Yannaria » Fri May 31, 2013 11:05 pm

just curious, is the donation anonymous, or will you like fly to meet the person/

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Postby Stardust » Fri May 31, 2013 11:08 pm

Anonymous. That's one thing I found interesting about all this. If both the donor and the recipient agree to have their information shared, they'll do that, but only after at least a year. I assume that's to avoid the donor getting too wrapped up in the process. Judging by the info they gave me, they seem quite concerned about my well-being after the fact, dealing with a possible failure etc.
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Postby Yannaria » Fri May 31, 2013 11:24 pm

yeah that actually seems pretty reasonable. I wouldn't want to meet the perosn I donated to if I did, because I would feel bad if they felt like they owed me something.

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Postby Yannaria » Fri May 31, 2013 11:27 pm

I can't imagine the stress of giving someone bone marrow, and then it being rejected, or them dying anwyay.

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Postby Manders » Sat Jun 01, 2013 12:25 am

Don't know about the states, but in Canada you can sign up online. They send you a little package with instructions on how to swab yourself, then you send it back by mail. Super easy.

Now that I've been selected I'll have to do a bunch of other tests, of course, but the sign up was a piece of cake.


Manders, she's being admitted today for another round of chemo? Good luck to her.
Yeah, she's there now. This is round 3 of 6.
I hear the best part of chemo is the morphine.
She's not getting morphine, dude.
That is the process about which I have heard.
my sister had bone marrow sampled for something when she was in college and said it hurt
like a mother fucker even with IV painkillers. That said, it is certainly worth it to potentially save someone's life.
Indeed. Mom had to have a spinal tap done for diagnosing purposes at the beginning of this, and she was awake for it, and said it was one of the worst experiences she's ever had.
Anonymous. That's one thing I found interesting about all this. If both the donor and the recipient agree to have their information shared, they'll do that, but only after at least a year. I assume that's to avoid the donor getting too wrapped up in the process. Judging by the info they gave me, they seem quite concerned about my well-being after the fact, dealing with a possible failure etc.
It makes sense they would be concerned about your well-being. You are sacrificing a lot for someone you know nothing about, but that needs your help.
yeah that actually seems pretty reasonable. I wouldn't
want to meet the perosn I donated to if I did, because I would feel bad if they felt like they owed me something.
I can't imagine the stress of giving someone bone marrow, and then it being rejected, or them dying anwyay.
Second both of these, but you can take solace in knowing that you did everything in your power to help a human being.
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