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NCSUHippie
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Minka, I doubt the last thought your mother would eve have is of you hurting her. I'm sure she sees how much you love her with all of your actions. I'm sorry that your mother and your family had to go through this.

6/13/2014 11:34:03 AM

MinkaGrl01

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I wrote a reply to this thread back in July 2014 and I never posted it. I just saved it to my google drive and decided to move on but I just cant. every day I still cried and for some reason today it's just worse. I feel like a completely different person than when I started this thread and my mom has been dead for 6 months and it still hurts and I feel will never get better. I've since lost my job, become a waitress, gotten married and have attempted to start running again.

I just wanted to take a moment to thank everyone for all of your amazing support. It was truly a blessing and helped me in so many ways.

My mom passed away on the 20th [of June 2014], right after sundown. I'm going to include some of the details incase someone comes along and is going through the same thing. Each journey is different but this is how it unfolded for us. When I started writing this post over a week ago it was just going to be a few paragraphs but somehow it morphed into 4-5 pages.

I just came up to PA for a weekend visit on June the 6th. The Wednesday before the hospice outfitted her with a morphine pump that delivered morphine straight into her port (permanent line to a vein by her collarbone used to give IV meds, take blood etc) they started the continuous dosage at 3mgs delivered hourly I believe. If she had any breakthrough pain she was to hit the bolster button that will give her more morphine and would lock out from giving another bolster for 15 minutes.

She hit the bolster more than 5 times so they upped the morphine to 4mgs on the next Sunday when the nurse came for her daily visit. The nurse recorded her vitals and then left. The night before was nice. Her and I spent the evening watching Beaches and she brushed my hair as I sat at her feet. She got confused a couple of times during the movie--didn't remember things, got confused about characters. This was a movie we had seen a crazy amount of times.

Monday morning after they had increased the dosage to 4mgs I woke up around 4:45 am to the dog whining and barking. I found the dog crying at my mother. She had fallen over in her bedroom. She wasn't hurt and was very comfortable. It was just frightening to me to find her like that. I helped her up and got her back in bed. A few hours later she had disconnected the line of morphine from the pump and tried to plug it into the phone. I didn't witness this, my sister found her disoriented.

I was supposed to drive back to nc that morning but I didn't want to leave my mom alone like that since my dad went to work and my sister left for the day. So I stayed until the nurse came and then had a chat with her after she checked out my mom.

Her BP had been declining and the nurse said mom's symptoms has been trending downwards and that she thinks mom is in her last few days. The nurse also told me that I should talk to my siblings and also my father and that he should probably take off from work. She also thought it would be a good idea not to tell my mom this or show her the little blue book about end of life symptoms she gave me. So I talked to my dad when he got home and I talked to my oldest brother and my sister.

That night was the last night she slept in her and my dad's bed from then on it was too hard to get her up and down stairs so she slept on a hospital bed the hospice put in their living room. Tuesday she had a visit from friends in the afternoon. The nurse told me earlier that day not to force her to eat but to give her whatever she wanted if she asked for it. Her friends brought food and put a sandwich to her face and she ate a bite or two of a grilled cheese sandwich. The same thing happened the next day on Wednesday when my sister and brother came. Forced her to eat. That night she asked for a strawberry so I sliced a single strawberry and feed it to her. She could only eat the one. That was the last thing she ate.

Eventually she stopped being able to swallow her medicines. That Thursday night I began having to give her pills by adding a few drops of water and creating a paste and using a monojet to inject the meds into the space between her lower jaw and cheek. She received her Ativan every 4 hours and her Haloperidol every 6 hours. I slept the nights on the couch by her side with a strict alarm set up on my smartphone so that I wouldn’t miss a dose. The alarm times were 12pm for Halodol, 2pm for the Ativan, 6pm for both, 10pm for the Ativan, 12am for the halodol, 2am for the Ativan, 6am for both, 10am for the Ativan, 12pm for the Halodol… rinse and repeat. I went days having these alarms, not missing a single one.

At first having to monojet the medicine into her mouth was incredibly upsetting and scary for me. I dont know why exactly, I felt afraid I was doing it wrong or that she might choke. Everything I did was following the nurse’s orders. I had her prepare all the monojet refills each day so that I had plenty to go for the next 24 hours. I had cups set up in the kitchen, one for the Ativan, one for the Halodol, and one for the empties.

Before each dose I gently swabbed her mouth with these gum swabs the hospice aide left with me. I was very religious with these also. I had a little cup by her bed that I had filled with water and dry-mouth mouthrinse and I would dip the swab in then drip the rinse over it and lightly squeeze out the excess. I would then gently swab all of the inside of her cheeks, her gums, her teeth and a little of the top of her mouth. This would make her bite down a little on the stem of the swab but then she would release.

All of this her eyes were closed. Eventually she opened her eyes less and less to where she never opened them again.

...

2/3/2015 4:18:51 PM

MinkaGrl01

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The hospital bed she slept in was in the center of their living room by the television. I kept the tv mostly on one of the music stations that plays music non-stop. She loves golden oldies so that’s the channel I kept it on. All the Big Hits of the 50’s and 60’s! Sometimes I would sing to her so I sang all of the favorites she used to love me to sing. Over the Rainbow, pretty much any Andrew Lloyd Webber in my repertoire, Patsy Cline, any movie soundtracks I know she’d like. Constantly holding her hand. And apologizing when I’d get off key.

Days came and went. Father’s day came. My fiance had come to visit me each weekend and for Father’s day I left the house for the first time in days and told him to call if anything changes, and I took my dad out for breakfast at a diner at a local airport. We got back as a hospice aide arrived to wash and tend to mom.

Neighborhood Hospice in West Chester, Pa was the organization my mom chose. Every day they sent an aide to help me wash, clothe, and change my mom’s sheets. The main aide, Jessica was wonderful. The hospice also sent a nurse every day, the main nurse was Karen. She took care of all things meds-wise. Told me how to give mom meds, what amounts, she kept the morphine pump working and kept us informed of that symptoms mean and what will happen. Eventually we had to start adding a drug called hyomax to the mix. This drug stopped my mom from creating secretions in the mouth. The secretions weren’t being swallowed I guess and was creating a rattling sound in her throat. It sounded horrible but the hyomax took care of that. This really dried up her mouth so I increase my swabbing to every hour.

While all of this is going on my sister went off the rails. Completely nuts. She’s bipolar. And she made this sacred place I tried to create a complete nightmare. It started off small and snowballed to a full and utter mania. She would scream and say such evil things to me over my mother’s bed. I tried to get her to go outside if she wanted to scream… but I could not convince her to do that. My mom heard everything. Everything. I could feel how upset all of what my sister was doing was making my mother. My sister called me evil names, swore at me, gave me dirty looks. She called me evil and said I was being Dr, Kevorkian. Saying I was going to hell for being a bitch daughter. She called every single person she knew to tell them how evil and horrible my dad and I are. She called the hospice and tried to get my mother put into a hospital. She called the hospice and logged complaints about the nurse and the aides. The hospice had to send our social workers and chaplains to us to help with my sister. Her insanity rubbed off on my oldest brother and he went nuts too. We’d get text messages of hate pages long on our phones. My brother had issues with my dad’s choices of burial and cremation and my brother didn’t think my dad should make those choices. We couldn’t do anything about either of my siblings. We couldn’t have the police take my sister away because she’s wasnt threatening us, my mom, or herself with any physical harm. Family and friends were calling the hospice nurse for info to make sure my mom was getting the best of care and that my dad and I weren’t hurting my mom in any way. We gave the nurse permission to tell them information on my mother’s care so that they would have the peace of mind knowing we’re keeping her comfortable as best we could.

It took over a week for us to get these two siblings of mine under somewhat control. (One of my older brothers was in Alabama and didn’t participate in causing us stress) I know, I KNOW, this insanity caused my mother pain. I know it. I know it caused her to hang on an extra week until she was convinced we would be okay. I had to tell her over and over in her ear that everything would be okay with us, that we would take care of each other and we would be fine. Over and over.

I dont think I can ever really put into words how traumatic this was. I was watching my mother slowly die from cancer, from starvation, from dehydration. There were a few beautiful moments in there like when in the middle of the night Sweet Caroline came on the Goldie channel as I slept and I woke up to her squeezing my hand to the Neil Diamond classic that always vexed me. Or another time when I was helping Jessica wash my mom and she had my mom turn to her side and she opened her eyes and held my face in her hands. That was the last time I looked my mom in the eyes. Or when we were boosting her up in her bed with a sheet underneath her so that she didnt have to do anything and after we pulled her up she made a joke about how with a little more force we could have boosted her out the window.

But with watching your mom die and then also having a lunatic sister invade and destroy the sacred space you’ve created just compounded this misery…. it’s just indescribable. I’m a different person now. It was single-handedly the most traumatic experience of my life. Add on top of that that I lost my job just a day before I went up to PA and it made for one hell of a traumatic June.

The Wednesday of the 2nd week I convinced my dad it was time to let the nurse catheterize her. She hadn't gotten up to using the commode since monday (assisted by my dad and me and we couldn't change her diapers without risking possibly hurting her on accident. I was so afraid of hurting her and it was so hard to change the diapers. When my dad and I could assist her on the commode that was hard enough. My sister insisted not to put her in diapers, but to put her in Depends…. that made things difficult but I did it. The nurse wanted to catheterize her that Sunday so that she wouldn't HAVE to risk getting hurt while getting up to use the commode but my sister and brother FREAKED OUT on the nurse and said NO. I waited until Wednesday when they weren’t around to have it done. It was getting too hard to change the diapers and I didn't now want to risk anything. The catheter went in so easily, I couldn't tell if she noticed, she didn't wince in pain like she had been while changing diapers. As soon as it went in dark brown urine came out. Over 800 ml filled the bag. It looked like Newcastle Brown Ale. The nurse emptied it. A look of relief just flooded my mom’s face. It must have been a nice feeling.

That Friday was the day she died. June 20th. That morning I noticed the medicines I were injecting into her mouth weren’t being absorbed. It was just pooling up in the cheek pocket. I called the hospice and they told me to begin gently massaging the cheek to help it along. So now I was swabbing her mouth every hour, giving her the scheduled meds and massaging them in. She hadn't opened her eyes in days and I hadn’t felt her lightly squeeze my hands in a while, she had been doing that every now and then to remind me she was still there. Breathing changed into gasps. I had been keeping a log on her breathing that past week. She went from about 18-19 breaths per minute, to about 11-12 breaths(gasps) per minutes. These breaths then became 7-8 gasps a minute.

When the nurse came that day she told my dad and I that it would be in the next few hours, she upped the morphine in the pump to 7mgs. My sister came over and was calm enough. We had a nice little day. My mom’s birds all came to the window (we had been throwing birdseed on the patio by the window to attract all the area birds (robins, doves, swallows, sparrows) she loves birds. We grilled on the patio just a few feet away and chatted and I sang. Around 8 o’clock that night, the movie 13 Going On 30 came on and I sat holding my mom’s hand watching it. Those 7-8 gasps a minute changed suddenly. At about 8:30pm the gasps ceased and her breathing seemed normal all of a sudden. I couldnt believe it.

I turned the movie off and put the goldie oldie station back on and put my head on the bed. I put her hand on my face and just watched this breathing happening. It was just light normal breathing for a bit and I just kept her hand on my face and I kissed her palm. Then I realized what if this was it…. what if it’s time? I decided to go get my dad who went upstairs so that he could have moment with her like I was having. I told her I’m going to go get daddy, I’ll be right back. I went upstairs and told my dad that I think it’s time and we went back down to her and I couldn't see her breathing anymore. He held her hand and it seemed like the breathing stopped. She wasn’t breathing anymore. I just started crying and crying telling her was all okay and we loved her so much and that she’d always be in our hearts. I just love my mommy so much.

It was 8:45pm

My dad immediately said it’s time to call hospice and let them know. We said some words again to her and then went outside to the front porch for some fresh air. I took a glass of pinot noir with me. There was about half a bottle of wine in my glass.

...

2/3/2015 4:19:49 PM

MinkaGrl01

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We made our phone calls and my sister took off. My dad went back inside after and I stayed outside. I came back in and he had put a sheet over my mom’s face.

At about 9:30pm the nurse from Hospice came. This was a new nurse. She was there to confirm that yes she died and to clean her body. My dad went upstairs but I couldn’t just leave my mom to be cleaned by a stranger. So I stayed and helped clean and change my mom’s clothes once last time.

I washed her down and we turned her to her side like the aide and I had been doing for the past couple of weeks but her left eye opened. The nurse warned me that air might come out since we were moving her and it might look like she was breathing but her eye bothered me and the nurse eventually noticed and closed it. I forgot about this in the next moment only to remember it days later and have a panic attack.

Once we got her ready we put the sheet back over her but that really freaked me out so we sat her up like she was normal but that was too weird so we just laid her flat put the sheet over her and waited for the funeral home to come and get her.

The funeral home was coming from Hatboro, PA (where I grew up) and took about an hour and a half. So the one guy arrived at about 11:30pm. I had asked the nurse to stay for him because I wanted to take a shower and go upstairs. The guy came and the nurse helped him load my mom into his car. I should have stayed upstairs but I wanted to thank the man for coming and make sure he had everything he needed, offer him something to drink maybe? I dont know what was going on in my mind… When I went down stairs he was just about to put my mom in his bag on his stretcher. He had wrapped my mom in the bed sheets on her hospital bed like a cocooned butterfly then he and the nurse lifted her and put her on the stretcher and he zipped her up and wheeled her away and into his vehicle. I blew kisses to her, thank the guy and the nurse and then went upstairs and went to sleep. Eventually.

She died a week before my birthday and we had her cremated and buried on the 28th of June. My brother has some of her ashes and we’re supposed to go to Cape May, NJ next year to release her ashes at the shore. Cape May was one of her favorite places in the world.

So that’s about it. That’s how cancer killed my mom.

2/3/2015 4:20:22 PM

slappy1
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I am sitting here, overwhelmed with emotions I don't even know how to identify.

Caroline - I wish there was a magic way to disperse some of the grief you're feeling so other people could help you share the load. I would definitely offer to take some of it. I can't imagine the immense strength you've had to summon to get through those last few weeks, and then everything after.

Thank you for writing all of that - I really appreciate being able to have a glimpse into what you went and are going through. If you find any amount of release or catharsis in writing about this and your journey, I will continue to read. And if you're okay with us asking questions, I will do that too.

The only thing I really have to offer is that I will be praying for you and your family, that God brings each of you a little peace every day, and a little more the day after that.

This just really sucks. I wish I could give you a hug.

2/5/2015 12:21:58 PM

jbrick83
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Ugh. Both of my grandparents died almost exactly how your mom did (cancer, slowly at the end, with hospice in their house, lying in a hospital bed in the family room in the front of the TV). My mom also had three siblings, but luckily they weren't as crazy as two of yours were. But my mom was just like you, staying by their side and taking care of them. Your mom was extremely lucky to have you there with her...hope you realize that. Not everyone could or would do that...it's not easy.

About the only benefit of dying slow like that is being able to say goodbye to your loved ones...and of course having them be able to say good bye to you. With that being said, I hope my loved ones go quickly. I want to be able to say good bye to them...but watching someone wither away is miserable. Cancer is a mother fucker.

2/5/2015 12:36:42 PM

acraw
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This is so sad.

http://www.pbs.org/wgbh/pages/frontline/being-mortal/

2/12/2015 12:55:37 PM

bmel
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Since I go around to nursing homes and do x-rays, I see a lot of people on their death bed. I generally try to put aside that they're slowly dying while alone and dirty. Sometimes I will grab their hand and squeeze it so they know at least someone sees them. I'm so glad your mother didn't have to go through that. I'm proud of you for being able to put aside your own grief and emotions to take such great care of her. She has raised a wonderful daughter and her legacy lives on through you. I hope your sorrow turns into something else. Something that gives you motivation and strength. You ARE a different person now. No one could go through that and come out the other side being the same person. So what kind of person have you become? Now that you know this amazing amount of strength exists inside you, you can take over the world. When you're ready, it'll be waiting for you. Until then, do what you have to to get by.

2/12/2015 1:54:34 PM

slappy1
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^this is so beautiful and so true.

2/12/2015 4:13:17 PM

Klatypus
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my dad got a diagnosis, it's not that I don't think my parents are invincible.... but I don't really know what I feel

he has squamous cell carcinoma, and it hasn't metastasized, which is a positive for my family.

My parents usually act more like room mates than husband and wife, but when my mom and I were outside she started freaking out that she didn't know what to do. It doesn't help that I have high anxiety related to people's health, the closer people are to me the more I become a hypochondriac by proxy. Anyway, I know that this isn't a terminal diagnosis, but we won't know anything for another 2-3 days, and it feels like each minute is excruciatingly slow.

My Dad went to the hospital yesterday for a biopsy and the PA had to try 5 times to get a sample from out of his throat/neck , and non of them were conclusive so they called in an MD and they took 3 core biopsies, which is just a fancy way of using a waaay bigger needle..... 3 times that shit was jammed into his neck.... I think that is what has freaked me out the most, 8 needles!!! 8 and they have to wait for the core results.


I went and talked to a specialist at the Cancer Treatment Center of America, does anyone here have any experience with that? They told me he really should get a second opinion..... I dunno I really just wish the results were back

12/29/2015 2:42:58 PM

acraw
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He should get a second opinion, but from a National Cancer Institute (designated) center. CTCA from what I have read is heavy on pseudoscience, alternative therapy. But if naturopathy is the direction you might want to take him, go for it.

12/30/2015 3:47:05 AM

Klatypus
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oh, thanks for the heads up then

12/30/2015 9:20:49 AM

acraw
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I wanted to post some this morning.
http://www.reuters.com/article/us-usa-cancer-ctca-idUSBRE9250L820130306
http://www.forbes.com/sites/stevensalzberg/2012/12/31/making-a-profit-from-offering-ineffective-therapies-to-cancer-patients/
http://scienceblogs.com/insolence/2013/03/07/the-cancer-treatment-centers-of-america-cherry-picked/

12/30/2015 2:51:05 PM

Klatypus
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the good: dad's core biopsy was conclusive, so he doesn't need the surgery

the bad: they confirmed that the squamous cell carcinoma has moved from under his tongue into his lymph nodes

the upside: the doctors he is working with are expecting to see good results after only 7 weeks of chemo

this is insane

anyway, thanks for the thread Minka, it helps to read about other stories, even though I am terrified

1/1/2016 11:27:18 AM

Klatypus
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so he has stage IV A P16+, which depending on who you talk to , is the cancer to get if you are going to get cancer


he is getting a feeding tube this friday and an IV in his chest monday, and then he starts just in time for his bday (and mine)

but there is a lot of silver lining, so I will just stay focused on that.


about when does chemo start taking some tolls on life etc? I have read online its like 3-4 weeks in and they will start feeling major effects


does anyone have advice on how to help energy levels during chemo?

thanks

1/18/2016 11:35:41 AM

crpelliz
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^is your dad going to have radiation treatment as well? If it's just chemo, that's a bonus - with head & neck cancer (a broad term for the type that it sounds like he has), the radiation treatment causes more side effects than chemo.

That being said, you're right that side effects with chemo usually start to appear 3-4 weeks in. It all depends on the person, though - he may tolerate it differently. Have they figured out which chemo they're going to use? For H&N cancer, often the chemo isn't nearly as problematic.

Fatigue: nutrition and hydration will be important to maintaining energy, as will light to moderate physical activity if he can tolerate it. Good sleep hygiene is important as well. Managing any side effects will play a part, too (nausea, pain, etc). He will likely have fatigue, nearly everyone does, and it makes sense - his body is fighting hard.

His treatment team should include a dietitian who will be KEY in this. There should also be a support person (social worker usually) that he, you, any family member can talk to about caregiver stress, anxiety, depression, etc.

Be careful what you read on the internet - information is good, but sometimes it's helpful to focus on what's important right now versus the future. These sites are legit:

National Cancer Institute: http://www.cancer.gov/
American Cancer Society: http://www.cancer.org/
Support for People with Oral Head and Neck cancer: https://www.spohnc.org/

I am a social worker at an outpatient cancer clinic. Cancer is no joke and it's super stressful - feel free to PM me if you have any questions.

[Edited on January 19, 2016 at 7:56 PM. Reason : .]

[Edited on January 19, 2016 at 7:57 PM. Reason : ..]

1/19/2016 7:55:33 PM

Klatypus
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Yes, he has 7 weeks of chemo and radiation.

radiation is 5 days a week. They were talking about 2 chemo drugs, Erbitux or Cisplatin. My father recently went in for an ear infection which is deteriorating his hearing since he never goes to doctors for anything, but I think that is when they caught the cancer .... so


anyway they were considering Erbitux (once a week) for awhile, even though its new, because his doctors were thinking that it could help preserve his hearing..... in the end they decided on Cisplatin which is 2 times a week

Thank you crpelliz

1/21/2016 9:48:22 AM

Klatypus
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They inserted an IV into his chest and had some trouble with his PEG tube. It's a race to get radiation to reduce the tumor before it blocks his esophagus, they had a lot of challenges getting the PEG tube down and his breathing dropped off for a bit, but they stabilized him.

Hopefully he will not need the PEG tube, but if he does that shit is wicked expensive. This Jevity 1.5 is like $2 /can and he would need to have 8- 10 cans a day another way to nickel and dime sick people I guess

Anyway, Chemo and radiation start Feb 1st *fingers crossed*

1/27/2016 9:59:14 AM

MinkaGrl01

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I hope he starts feeling better soon Klatypus

2/1/2016 1:40:32 PM

Klatypus
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he was able to drive himself home after day one, even though the nurses told him not to (I think they are supposed to say that)

he said so far he doesn't feel anymore tired than a long day of work, but I imagine that will start to add up as the days go by and his body isn't getting relief

going to visit him this weekend and I already have the last week of Feb off so I can hang out with him and clean the house and cook etc


Also my dad is well into the stage of 'hey let's make everything into a joke about cancer' ..... it's charming

2/4/2016 2:10:33 PM

Klatypus
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welp 8 hours of chemo down today, #2 of 3 before they reevaluate my dad's cancer

he has lost 12 pounds in the 3 weeks of radiation and chemo, but a lot of that was excess anyway, so far not too much worry.

I am a little worried because he is trying to tough it out as much as possible and he really does not want to use the feeding tube. He is not taking any pain meds, but he really should be taking his prescription mouthwash that is also a local anesthetic of some kind and should make swallowing and eating easier.


Also, today my father entertained us both by fucking with the nurse and pretending he couldn't remember his birthday

2/22/2016 8:20:24 PM

MinkaGrl01

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Klatypus: At least he's keeping his sense of humor. I hope he starts to listen about that mouthwash. Why do parents have to be so stubborn?


AFM: Well it looks like I get to hop back on this train... my dad was diagnosed with prostate cancer last Wednesday. We find out this week if it has spread. He'll probably go with radiation instead of surgery.

2/23/2016 10:40:08 AM

Klatypus
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that is really terrible news, I;m sorry

that sucks, the waiting blows. I am really sorry, I wish this wasn't such a normal thing. Keep me updated

[Edited on February 23, 2016 at 10:56 PM. Reason : .]

2/23/2016 10:52:21 PM

Klatypus
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^^ any news MinkaGrl01?



[Edited on February 26, 2016 at 5:17 PM. Reason : .]

2/26/2016 5:17:10 PM

Klatypus
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Dad has been fighting off chemo symptoms, but they are starting to catch up with him, He refuses to use his feeding tube, but he is losing so much weight :/

3/10/2016 9:45:04 AM

MinkaGrl01

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We went through the same thing with my mother, especially in the beginning. Holy shit, she would completely refuse to eat or drink. The doctor called it a special name but I cant recall it right now. Most of it was psychological, like she spent a huge amount of time going through her things telling us what we would inherit even though she wasn't close to death (4 years before) and had only just been diagnosed (given 6 month prognosis) and she felt if she going to die then she'll just start refusing food.

Some of it was that the chemo literally changed the way things tasted in her mouth. Food tasted gross to her and it wasn't worth trying to force herself to eat. (She didnt have a feeding tube)

She also would not drink water. It was so frustrating. Water tasted different. I had her on an alarm, like every 15 minutes to drink a shot glass of water, to try to keep her hydrated. DID NOT WORK. Just had to keep going to the doctors so that she could get fluids in her port.

It was incredibly frustrating for me so I cant imagine how frustrating it was for her.

I'll also add that my mom had weight issues most of her life and had gastric bypass done years before so her stomach was really tiny and couldnt hold a lot of food too so that was a whole another issue.





The scan showed my dad's cancer is only in his gland. The doctors only want to do radiation beam therapy so first he'll get these marker seeds put into his prostate on 3/15 then a week later he'll go in for radiation.

I think it's really weird that both my parents have ended up with cancer in their reproductive organs. Luckily my father's was caught early and it isnt as close as severe.

3/10/2016 11:31:01 AM

Klatypus
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^that's good, I hope treatment goes well and easy on him.

I'm going to visit next week, so I'll have to see for myself what state, physically and mentally, my dad is at. He said everything tastes awful and hurts his throat, and the only think he has a desire, if any, to munch on is Walmart donuts and pudding... But that was 3 weeks ago. My mom is at her wits end, because he is already stubborn, but he is also frustrated and I'm not entirely sure my mom has patience for my dad neglecting his health ATM

3/11/2016 11:01:30 AM

Klatypus
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my dad has lost 34 lbs this month and now my mom is having pain in her side and throwing up, some of which I think is stress induced and now requires her to go through a multitude of medical tests because no one knows what is going on and my dad won't even wear a belt , but his pants are falling off

one minute everyone says they are fine they are fine, and then dad isn't even able to stomach a tiny bit of cheesecake and my mom is throwing everything up, but nooo we are all fine here

so apparently things have progressed far worse than I really prepared for

3/14/2016 12:02:22 AM

slackerb
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Went to the doc to get a lump in my back checked and they ran some tests and found a tumor.

I'm scheduled for a biopsy next week, but the docs are very concerned, as they can see aggressive tendrils coming from the mass and infiltrating things around it.

3/14/2016 2:56:47 PM

MeatStick
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My dad got diagnosed with Acute Myeloid Leukemia when he turned 67. He just noticed one day that a bruise on his leg was getting worse. My mom called me at work to let me know he was rushed to Duke and that they think he had 6 months to 1 year, even with treatment. For reference, Acute Myeloid Leukemia is a cancer of the blood, specifically the bone marrow. His body had quit producing new blood cells.

We got very lucky that year. Duke was in the process of a study for my dad's type of cancer and because he didn't smoke, drink, and exercised daily (could do like 100 clap push ups I'm a row) they wanted him. 6 months later after really harsh chemo and drugs, dialysis 4 times a week, and 3 months at the hospital he was in remission. I took off work a lot to drive my dad to doctor visits and sat with him while he got work done. I pushed him around in a wheel chair and made jokes. Through all this, my dad made jokes too. When he got quiet, I asked him what he was thinking. His only worry was who would take care of my mom. They have been married since he was 21. Only been apart when he went to boot camp during Vietnam. He worried about her.

2 weeks after coming home he got a bad cough...which turned into a lung infection, then a bacterial onfecrion, then pneumonia. Because of the chemo my dad had no white blood cells to fight off the infections. He was put on life support and a ventilator and put into a medical coma. The Dr's told us to come say our goodbyes...again. My mom refused to give up on him. They beat his body up with a lot of drugs and 1 month later they woke him up. He went from 180lbs to 115lbs. He was so fragile they couldn't even cut his finger nails or hair, in fear he could bleed out or get another infection.

He spent another month at the hospital and 3 months in physical therapy.

Today my dad is 165lbs and uses "cancer survivor" as a way to guilt extra pieces of pie and foot rubs from my mom. He's in full remission and the Dr's told him he's a miracle, and told him he had many years left, though all this probably shaved off 5-10 of them.

Total cost of all this - over $800,000. Parents paid - $0. Since my dad was in a study, Duke paid for everything. We were super lucky, and I thank god everyday that my dad was strong enough to go through this and duke is so damn good at what they do.

[Edited on March 14, 2016 at 9:31 PM. Reason : ...]

3/14/2016 9:28:11 PM

Klatypus
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^^ keep us updated, and I am sorry to hear that, hopefully it will be easy treatment

^ glad to hear a survivor story

3/17/2016 11:04:52 AM

slackerb
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Got my results back.

Good news: It's not cancer (can't metastasize)
Bad news: it's a very aggressive tumor that infiltrates stuff around it.

Doc said it's cancer but not cancer, a pretty rare form (2 in a million).

Gonna have a meeting with the docs, treatment likely is surgery, possibly chemo and/or radiation before surgery.

I don't know whether to be elated or sad.

3/23/2016 1:45:34 PM

DonMega
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sounds like reason for a little of both, but make sure to count your blessings when they are there. Thank goodness it can't metastasize.

Good luck with your treatment.

3/23/2016 3:09:15 PM

Klatypus
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^^ that is the best news you could possibly get at this point in diagnosis, so that IS awesome.

It's week by week, day by day, and sometimes hour by hour, but just keep moving to the next step

3/28/2016 11:13:48 AM

slappy1
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any update from Minka, Klaty, and/or slackerb?

I don't post much in here but just know there's someone in Cincy thinking about and praying for you guys and your journeys.

4/7/2016 1:28:31 PM

Klatypus
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dad is done with chemo and radiation, now he is slowly trying to recover. I don't think he realized how much of a toll it would take on him, and for as long, but in general he is doing well. I am not sure when his next screening is

4/9/2016 9:48:26 AM

slackerb
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I got some great news last week! And some bad news. This seems to be the trend.

Great news is that for treatment we're not going to do surgery for now! Bad news is that the surgeons says that surgery should be a last option since it's unlikely to be successful and could make things much worse. Long story short: My tumor is growing fast, but is surrounded mostly by fat and muscle, preventing it for now from growing into squishy bits that I'd like to keep. If we do surgery, we could have to remove some or all of the barrier to get good margins, and if it recurs (which they estimate at 70% chance of recurrence), it may be able to get to my organs.

So no surgery (yay!). Treatment is hormone and anti-inflammatory drugs and monitoring for now, and chemo and/or radiation if that doesn't work. Then surgery as last resort.

I drank champagne to celebrate. With the meds, I can't drink alcohol now. Mine will be a long battle of treatment and managing my tumor, but it's very unlikely to terminate me!

4/11/2016 11:32:33 AM

JT3bucky
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That is good news...just keep a watch on it.

Is it a high risk surgery? seems like they would want to just remove it.

4/11/2016 1:00:56 PM

slackerb
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Yes, it is high risk. The type of cancer I have has a strange tendency to grow even more aggressively when surgery is unsuccessful. The recurrence rate after surgery is typically 50%, since it is a fibrous tumor and connects and sticks to all kinds of stuff, even growing tendrils that coil around tissues.


Mine is on the outside of the abdominal wall, but near the spine. They didn't want to risk potentially exposing my intra-abdominal organs and my spine by having to cut out around the tumor to get good margins.

Thanks for letting me talk about it. I talk about it to my wife, but it's awkward with anyone else but the internet. So thanks.

4/12/2016 10:25:44 AM

Klatypus
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yikes, keep us posted

4/18/2016 4:11:57 PM

GREEN JAY
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how is your dad doing, Klaty?

5/9/2016 3:19:48 PM

acraw
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Slackerb, what is the name of your cancer? Curious about the molecular mechanism behind choosing an anti-inflammatory and hormone for your treatment....

5/9/2016 8:15:10 PM

Klatypus
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the doctor's want to give it 2.5 months before they rescan to see how much progress they may have made during the first round. My dad is down 60 lbs since the start, but he is finally eating around 2,000 calories a day now, so hopefully his weight loss will slow down.

other than that his throat feels better since being out of radiation, every now and then his throat feels torn up, but mostly he is doing well, and tomatoes do not disgust him anymore. He is super pissed that the doctor's won't take the feeding tube out yet, and he keeps harassing them nonstop to schedule him to have it removed.... so that's a good sign. Oh and he is only taking one nap a day instead of several

I'll check back in when the doctors tell him some updated info

5/13/2016 8:10:26 AM

slackerb
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It is a desmoid tumor. It's a weird cancer thingy, not traditional at all. Does not metastasize but still grows aggressively locally.

I'm one month in and just based on the way it feels, my tumor is still growing fast. Hopefully the next few months we see results.

5/13/2016 9:43:41 AM

acraw
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Interesting. I only hear about antiestrogen treatments for breast cancer. But apparently desmoids are mediated by estrogen as well.

http://annonc.oxfordjournals.org/content/23/suppl_10/x158.full

5/14/2016 12:17:24 AM

slackerb
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Got my results back and its great news and I'm kinda disappointed. Seems a common theme.

Tumor has remained the same size, so either it stopped growing on it's own or the medicine is keeping it stable.
Plan is to continue the meds and monitor, but appears unlikely to shrink using only this medicine.

So I'm elated that the medicine is controlling it and I don't have much quality of life impact, but that means that the best case scenario with this treatment is likely decades of this.

I know I should be amazingly joyous, and I am, but I can't help that I also feel disappointed that this thing is likely to be with me for a long time. Less radical treatment means longer term care, whereas if I did chemo or some other high-tech stuff, I could maybe be rid of it once and for all.

9/16/2016 3:41:30 PM

Klatypus
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^I totally feel ya on that, it is kind of like a dark cloud hanging over you but never erupting, so you have to keep your raincoat on all the time.

I not sure if it's ever once and for all though, my dad's cancer is probably the bestest case scenario ever (slow growing and no traces of it after one round of chemo) but that dark cloud is still there, we awkwardly joke about it, but each new development in his health has us running circles trying to stay in network to confirm that it's unrelated to cancer and yes his cancer screen came back negative (this time)

I think cancer diagnosis is a lifelong marriage to your own mortality, constantly reminding you that you could die from unforeseen health problems at any moment, but I think this could probably be true for any life threatening/complicating disease etc diagnosis.

On the bright side it does have a tendency to motivate (some) people to be hyper vigilant about staying healthy, just don't let the negativity consume you, it can be worse than cancer

[Edited on October 4, 2016 at 12:54 PM. Reason : .]

10/4/2016 12:54:00 PM

Jeepin4x4
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My aunt was just diagnosed with aggressive pancreatic cancer.

10/25/2017 8:41:58 AM

rjrumfel
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I don't know if there is a non-aggressive form of pancreatic cancer. I had a co-worker who had it and they caught it very early.

My mother passed away from lung cancer in 2004 at 50. It was a very tough time. She fought it for a year and a half, long enough to see me finally finish school.

10/30/2017 9:32:46 AM

bmel
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I got diagnosed with an invasive molar pregnancy on Thursday. Pretty much knew the diagnosis was coming, so wasn't that shocked. It's still weird for your doctor to tell you you have cancer. The good news is chemo is 90-95% effective. Furthermore, it seems to not have spread from my uterus, so even if the chemo fails, I can still have a hysterectomy to completely get rid of it. Seems I've hit the cancer lottery, if there is such a thing. I still have to get chemo though and that's starting to scare me. I really don't want to lose my hair, but then that makes me feel so shallow. It's just hair, after all.

On Tuesday I'm heading to Duke Cancer Center to talk about treatment options. I'm excited to figure out what I need to stop this tumor from growing. I'm also hoping they can prevent me from needing a third surgery.

1/20/2018 3:40:10 PM

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