feeling confused and helpless

AZIROC · New User Joined: 22 Dec 2008 Posts: 6

i started to write this last night but couldnt post here yet till i got that confirmation email.

Hello everyone. I wish I did not have to be posting here but...well.. idk. maybe someone can maybe tell me who i can talk to, what i can do. I really dont know where to start, or what to say. My name is Kris and my fiance is Penny. I am 27 she is 28. I cant really say i just found out about her having cancer, cause after we started getting to know each other more, she told me she did, just to give me a chance to "run" i guess. but i didnt. i really didnt know how bad she had it, and she never really lead on. unfortunately when she got really bad, she told me everything. which was pretty much she is in stage 4 cancer. since she is a Dr., she used all the big words on me, and i cant remember exactly the names of the cancers she has. I just know it was in the stomach and kidneys, and she had something like 15+ limp nodes. The name for the 2 cancers she had still escapes me. i just know they r pretty rare to begin with, let alone its "ment" for older black males, where she is a young white female, wo never smoked. well that was months ago when she got bad and 10/08/08 she had her big surgery. needless to say, us not sure how it was going to turn out, and me never really "experienced" death before let alone with someone i love more then anything, saying our "good-byes" wasnt easy. her chances of surviving the surgery was only 30% and her chance of making it after that was less then 15%. but thank the Lord, she pulled thru. she is a fighter. unfortunately they did have to take out her stomach, and basically made another 1 out of her intestines. they were able to get all the cancerous tumors off the other parts.. but they saw some cancer on her lungs but got it off. well.... a week and a 1/2 later she came back home, she went back to her liquid radiation treatments, but only had to to them about 3 times a week. she said so many times how she feels SO much better, the pain is gone and how she is just so much happier.

well, unfortunately 2 weeks ago, she got some bad news, while at 1 of the treatments,i guess the cancer came back. fast forward to Saturday, 12/20/08, i guess the pain got so bad she had to go back to the hospital out of state and that is where she is now. unfortunately, the worse of it is in her lungs. and last night, well, technically sunday morning, around 5am, she stopped breathing. thankfully her friend just happened to wake up and notice this i guess right when it happened, and they were able to get her breathing again. so now she is doing breathing treatments as well as she has a machine hooked up to her so if she does that again, an alarm goes off. i guess what i am kinda wondering is.. like.. from reading alot of posts on here the past few days, unfortunately alot of others have gone thru this or are going thru this. she is still fighting it and not giving up. She has told me she is scared.. but she is a big believer in God (its funny cause she believed in God and i never did and i believed in marriage and she wasnt for it, and now we r engaged and ive been reading the bible and going to church, funny how that stuff works out). anywho. but now shes also come to the... acceptance, realization maybe, that she may die here real soon. the drs have told her they cant figure it out and said she has maybe 6 months to live. and normally i dont agree with those doctors, but she is VERY smart..even for a doctor. and shes read... wow, SO many books on the kinds of cancer shes has.. and she cant even figure anything out. shes at a clinic now, which i guess they can do more then hospitals... but her dr i guess is some "best in the business" as far as cancer goes, idk. but hes coming down in the morning to check on her *he was the 1 that did the operation on her back in October* and he trys everything. well.. idk, the thought of losing her back in october devastated me..then IF she ops to have this next operation, there is a less then 15% chance she will make it. and in the october operation, she almost died on the table once.... so idk if she can do it again, cause she looks alittle worse then the 1st operation. i mean, i seriously dont know what to do or think, and then on top of it, there is her 6 y/o son. btw, we have gotten all the legal stuff out of the way a few days before her 1st operation and we agree'd to let me adopt him. and me, 27, raising a child.. wow.. thats a whole new worry i have. but as of right now shes doing, ok i guess. still in some pain, but not as bad as a few days ago. infact, best case scenario she gets to come back monday evening. but thats best case.

we r really going to try to get her back home so her, her son, her 2 nephews she has legal custody over, and myself, can have our 1st christmas together... even if it means we have to take her back to the clinic friday. sorry for the rambling, but its helped me from passing the room and worrying and prob making myself go bald alot quicker. i was just wondering.. and would like some honest answers (me and her always promised 2 be honest and tel each other the truth, even if its what we dont wanna hear, specially now). but like.. what can i see happening with her. i mean, i dont care about looks, if she looks "grey" or skin and bones, but i just dont want her in pain, but would like to know how to tell if shes in pain incase she isnt telling me. also, what to expect or how to tell is she is dieing, like, only days left or hours. and i guess alot really depends on what her dr says monday morning, and go from there you know...but its the waiting that is getting to me. mostly the not knowing and making myself run thru 1000 different outcomes. ive been reading the bible considerably more lately as well as praying alot, and it has helped me to not worry as much, but it is still there and not knowing if she will be with us come christmas, or new years, or 6 months down the road... i just dont know what to do or think. sorry for the long, single, paragraph everyone, maybe a part of me just needed to get alot off my chest and "out there" .

Update: as of 12/22/08 @ 120am. i talked to her over the phone for prob 30 mins. and those were prob close to the hardest 30 mins of my life. i guess they have had her in/on this breathing machine that's like a bubble of some sort that has alot of holes in it and blows oxygen in. unfortunately, its either the pneumonia thats making her cold, or the air thats making her cold to where u can tell she is shivering/freezing just by the way she talks. and the nurses there say they cant give her any more blankets (she has 4 now) cause they have to keep it cold/sterell so the pneumonia doesnt spread. and she even said that she never read/studied about pneumonia and cancer so she doesnt know if what they say is true.we were hoping to bring her back today (monday) and her and i talked and she made it sound like monday night was possible, but tonight when i talked to her, she was so cold, and idk if she was just saying it or what, but she sounded so scared, said ur cold when ur going to die, and she just wanted to come home monday morning. but the drs have said no and they need 2 do another treatment. and then she said some people where there to run some tests and she would text me if shes awake.. i guess she has been so cold and crying cause she cant get warm all day, that they gave her some shot in her IV to calm her down right before she called... and at the end of our conversation, u could tell she was either just shivering so much or the drugs were kicken in and making her tired. so now ive been texting with her friend there, and her friend is also a Dr. and she said her coughing is bad. but her friend said they r letting her come home tomorrow (monday). which, idk, i am very happy 2 hear cause its only been a day and i miss her so very much. but in the back of my head, i wonder if they have given up on her and just want her to be happy in her remaining time. wow, i cant even beleive i wrote that. just the thought brought me to tears. i guess right now I just want her to be happy, and at least make it to see her boys opening presents on christmas. i know that means alot to her. if she is ok by then, maybe the next day or 2 i can get us some family portraits taken, or atleast do some pictures of all of us on christmas day.

UPDATE as of 11:30am 12/22

we have been texting back and forth here and there. i dont know exactly if shes coming home today or not, which i wish it would go 1 way or another so i know if i can leave to go there you know. but she said shes still cold from the thing being on here and still in pain. she isnt a believer in pain meds, idk y, but i wish she would take some just to she would be in as much pain.

UPDATE as off 2:00 pm 12/22

I guess the nurses there dont want her to fly, yet wont give her an answer of why. im sure it has to do something with the air pressure, but i dont know. i may just fly out there and her friend and I may just drive her back. Whats "sad" is my work, even though i told them the situation, told me i can not take the time off. needless to say, they can go pound sand and if they do try anything ill just go to the media about it. im sure the last thing any work wants in this economic time and this holiday is the media making it known how heartless a supervisor can be. but thankfully there is FMLA and if i have to ill just use that.

azsun · Regular Joined: 23 May 2008 Posts: 22

aziroc
I am soo sorry you are going through this tough struggle. My thoughts and prayers are with you, her and the kids. I wish there as something I could say to help... My heart goes out to you. Crying or Very sad

_________________
4/08Dad dx NSCLC IIIb adnocarcinoma 5-7/08 Carbo/Taxol wkly; 5-7/08 37-Rad chest/neck 6/08 ERsurgery trach&Jtube. 7/08 hsptl staph@jtube&blood trans.Headaches,MRI 10/3/08Multiple brain mets all lobes,11 in cerblllm. 15 WBR cmpltd 11/5/08. Decadron-brain swelling. 12/20 Pnuemonia. Petscan 1/7/09 disease progression : (

AZIROC · New User Joined: 22 Dec 2008 Posts: 6

[quote="azsun"] aziroc
I am soo sorry you are going through this tough struggle. My thoughts and prayers are with you, her and the kids. I wish there as something I could say to help... My heart goes out to you. Crying or Very sad

[/quote]

thank you. it does mean alot. i know after writing that it help how i felt some. so now its more of a day by day thing.

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 1079 Location: UK

Hi, Aziroc - this is a really, truly awful time for you, and there is so little comfort that can be offered.

If she is on a ventilator, I would not look to get her home in the near future. Your love and support are what she needs and what you are giving her. Keep going - maybe look to her birthday as a day for getting her home.

In the meantime, using photographs to keep her as part of the group is a great idea. Perhaps you can see if the hospital can set up something like skype so that you and her children can talk to her?

Keep venting here if you need to. Safer than keeping things bottled up.

AZIROC · New User Joined: 22 Dec 2008 Posts: 6

well as of about 530pm on 12/22 she and her friend left nashville. actually as of now they just went thru Memphis and almost little rock. they gave her on oxygen machine and some other breathing thing. i guess at the time they were worried about IF she stopped breathing while flying..the planes gonna need time to land.. let alone find a place to land. but yea, i spend a while on mapquest and the internet basically finding them their route back here so they r always near a hospital "just incase" i agree i would rather her stay at the hospital, but she really wanted to come home. she does sound alittle better then the day before, so hopefully that breathing bubble thing helped. i do know when she gets back here, which will be prob late tuesday if not the wee hours of wed morning. her dr will be flying out here after christmas and check on her. but she will be going straight to a hospital when she gets here. then maybe on christmas we can bring her home for alittle while so she can see the boys open their presents. but right now she does sleep alot. well, alot to me. this is also the same woman who sleeps 4 hrs and is good to go all day. idk how she does it, but she always has. but now she prob sleeps a couple hours at a time.

Tera · Senior User Joined: 31 Dec 2007 Posts: 297

Kris, I am so sorry to hear of your fiance's cancer issues. She is lucky to have someone by her side like you and her wonderful friends. I will pray for strength and peace for Penny and for you and her friends.

Gillette · Posted: Tue Dec 23, 2008 4:24 am Post subject: feeling confused and helpless

I think the subject of your post should be 'strong and fighting'
God Bless you , Kris, and my love to you, your Penny, and your new family. What wonderful support, and love i hear. Your post covered many subjects that make it clear how deep your love is for her, and how hard this battle of cancer is for you all. and it is very hard on all. It - cancer- is one of the most devastating and indescriminate plagues of our time. My Ben has chemo treatments with elderly Catholic Nuns- no one deserves cancer. I am so sorry you are on this path, this road with us. I am also glad you found this place, as I have, because it does help. People are supportive, but none can be more so than those of us dealing with cancer in our families, our lives, and ourselves. Penny sounds like a wonderful young lady, and I pray all travel continues safely under His watchfull eye, as she is still on the road as I post this. Good luck to you, Penny, and the boys. Enjoy every moment of your holiday- I know how precious every moment is.
God Bless, and good luck.
_________________
Kathy: still loving Ben, as he rests with God.

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 1079 Location: UK

I am so glad for you that they have managed to find a way to let her come home. I hope you all have a wonderful Christmas.

AZIROC · New User Joined: 22 Dec 2008 Posts: 6

thank you everyone. she is still on her way home. her friend is drives alittle "slow" aka 5 over. and the fiancee has to stop every now and agin to get sick. but i talked 2 her this morning and thru txting and she is doing well, just sore all over. thank you again everyone!

AZIROC · New User Joined: 22 Dec 2008 Posts: 6

update: 12/24

she and her friend had 2 stop in Amarillo, TX last night. i guess she was throwing up alot and very dehydrated. they put an IV in her and put her on a breathing machine. Unfortunately the Dr's there gave us a scare cause they said that her lungs were full of liquid and it looked really bad. but thankfully this wasnt the case. how they missed this idk, but i wasnt there so i cant say. they left this morning and she ended up picking up her boys instead of letting them fly (there were staying at some friends house in Tx). and as of around 1:20pm she was in new mexico. her friend said she goes from looking ok to looking really bad. but they got her breathing machines and what not ready for her when she comes home. so idk, imo that sounds almost like a hospice situation to me... or they r just being really careful about it.

AZIROC · New User Joined: 22 Dec 2008 Posts: 6

sorry for not updating in a while, holidays were hard. she wasnt feeling well, and when she got back home, someone had broken into her house and basically took everything. xmas presents, electronics.. EVEN THE FOOD IN THE FRIDGE! yet they didnt take my ubber rare motorcycle, which i wish they had cause if they tried 2 sell any thing on it, they would have been caught in 2 secs. insurance is taken care of everything, just gotta get a few things for now till the check comes.

from 12/24 till 1/02 it was pretty much the same, she was still sick and had no energy. then on the 3rd, her dr and another surgeon came down from NY to check on her and such (they thought they were going to have to operate i guess). well the 3rd they did some blood work and alo of tests, to see where the cancer was. well, after 8 hrs of tests...they couldnt find anything. so they told her come back the next day. she came back the 4th, they did tests for 10 hrs, cut open her stomach (not a big opening) to see where they knew it was not even a week ago, and checked her lungs out where they KNEW they saw it, and there was ZERO. all the blood work and tests came back showing no cancer and her white blood cells normal. Very Happy

so idk if anyone believes in miracles but this was truly 1 of those. she does have 2 do her breathing treatments, and that bubble thing twice a week. i guess when she had the cancer in her lungs AND the pneumonia really did a # on them. but they said the treatments and some medication, she should b fine in about 6 months.

Id like to thank everyone on this forum. I was able to read ALOT of information and it opened my eyes to how this can effect so many different people.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 2853

Wow, this is so amazing! She has the heart of a lion and now a miracle to boot! Let's hope this good news keeps coming and she regains her strength.

God bless you all!!

PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

falcon978 · New User Joined: 06 Oct 2009 Posts: 1 Location: az

time for an update *sorry its been such a long time between*

1st ull see im under a different name. i tried to log in with the other 1 and it didnt work, and when i had a new password sent to me, it still didnt want to let me log in, so i made this 1 up.

well.. i wish i could say i had good new. in a way i do, she is still alive, but if u ask how well is she doing, thats something different.

since december, the drs who came down to see her have had her go to the hospital in new york they work out of, Memorial Sloan-Kettering Cancer Center, and she has been in the same hospital in new york since. some times it seemed the cancer was gone, other times it seems there was nothen to make it stop from coming. the drs tried many different treatments, even untried stuff to see if it would work, but in the end, it hasnt. for the most part her health has been "ok". but in the past few months, its gone down. she now weighs around 80 lbs, but some of the medicine shes on she will be up to 200 in 2 weeks, then down to 100 in a week, then 150, just all over the place. she is now trying to push people away from her. she has agree'd to let her very close family friend take care of her son(her mom and dad died), and now she is trying to push me away. shes gotten a "hotel" next to her hospital. they come and get her 2-3 times a day to do treatments and whatnot. but now she doesnt want me to come see her and wants me to just "move on". *yes, her and i have had that "fight" about me not moving on countless times. but right now she even said shes accepted that she is dying and wants to be alone when it happens. i know, seems like i only come on here when tings are bad, and nvr report the good. im just beside myself on what to do. i got off the phone with her about 30-45 mins ago, she went to do a treatment and said she would think about me coming to visit her. but she said she doesnt want me to cause then she will be mad at GOD for letting her not be able 2 be with me and for us to grow old together, and she doesnt want to be mad at GOD right before she goes to heaven.

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