GBM 4 RELATED II the continuing story

This is coming from the previouse site GBM 4 Related started by my husband Andreas. Adreas passed away on Sept 9,2012 but the site had so much information on how to live with the tumor, the treatment, the consequences, the symptoms, the heart ache, the devasataion, the loss, it was all there on that site. I hope somehow the information will remain. I shall do my best to carry on so that all that Andreas went thru is not for vain. So that all that so many of us have gone thru is not lost to the ones following.
Please , when you want history go to the original site GBM 4 Related and then come to me here.
All the best wishes to you all, Ty

Report post

245 replies. Join the discussion

Hello Ty,
Thank you for continuing to support those of us who are still managing through this terrible journey. The weather in Delaware was just beautiful today and I managed to get my husband outside to soak up some fresh air and sun. I also wanted to let you know I did read your response but I am a stubborn women and still sitting in denial. Next week we get the results and I will keep you updated. I hope you are doing well and thanks so much for your support and words of wisdom.

Report post

So glad I found you here. Jack had a great day here in Kentucky. The weather was fabulous. He even got on his motorcycle and rode for about an hour. He hasn't done that except for a couple of times since his diagnosis in April 2012. I guess since he's not taking any chemo since July (the Temodar lowered his blood counts too much, it was too much of a risk), he's getting his energy back. His MRI in Sept. was clean. It's so wonderful to see him enjoying life, but I'm also just waiting for the other shoe to drop. I try to be upbeat around him as much as possible. His next chemo is the first week of Nov. and I'm keeping all of my digits crossed. Please pray for us. Trish

Report post

Ty, don't you have to sign in as Ty? I'm thinking the ABTA would like to close Andreas' account (and not delete anything, per them). In my opinion you'll have to create your account with your name.

Report post

OH NO!! I thought I did that! aghhhh. Why can't they just leave it alone? I don't have time to try and deal with it now. I'm sorry, Ty

Report post

I tried to open a new account but it won't let me. Says screen name is taken of course...it's me! I don't know how to do this Ty

Report post

Ty, when you get home from your visit with your mom, if you can't figure out how to open a new account under your name, just give them a call.....ABTA contact info is below for your conveneince. I'm sure someone in their IT dept will be more than happy to assist.

American Brain Tumor Association
8550 W. Bryn Mawr Avenue
Chicago, IL 60631
Phone: (800) 886-2282
Fax: (773) 577-8738
info@abta.org
www.abta.org

Report post

Hi Ty, Just checking in to make sure I get any updates. Have a great trip to see your mother.

Report post

Hello everyone this is now my site I guess. Please check in with me here or the other site. I've lost all the friends I had as Andreas so if you would all send me new friend requests I will try to start from scratch.
Some people are having a hard time right now. Say extra prayers for the ones struggling with what's coming next. It's never easy.
Love, Ty

Report post

o.k. Ty, thannks for keeping this going, and yes Ill be thinking of the people with extra sturggles, now I think of everyone on my block more including the 90 year old man who just lost his wife a year ago and as soon as he found out my husband died 2 weeks ago drove up sobbing and held my hand and gave me a hug and said how lonely he was and how noone visited hima and would I please visit (his son livves next door) they were married 50 yeras (we werr married 28) so I promise wi will ivisit him and take him some branana bread. Oh the learning we do. He feels really sad and desperate and so ddo I. Today was my f irst day alone the realtive left finally, didint want them to go but need to rest and daughter needs a day off so I let her miss school to just chill. shes been going nonstp since the week before her dad died andl ther i (she vnever took one off even during th week of caregiving and the day oafter her dad diesd ). the eweather was nice so that helped but its all very wierd. Fortuantley I have so much paperwork and oney stuff to do that its not even any time to think, b ut when I do , like you say its just a wirlwhind of thogts. The service was so beautiful but it was all like a dream. THe lady at the bank who lost her brother in a sudden rollover 4 wheeler accident last year, assured me that people will continue to be kind and uspportive in this commuynity we live in. She said they will keep checking on me and not expect everyting to magically be back to noromal. I hope shes right. I have so many worries already about the ffuture as Im sure you do. Its good s.to sasee your mom, I think all of our relationships will change drastically. we thought they had changed before but htisi look like an exterme meakeover in the realtionship department dont you thingk. I see it alreayd. But, Im also tyring to take one day; at a time. B reathe, exercies and enjoy the time to eat an actual meal instead of on the run or whil e your feeding your husband. It sturikes you how much carefiving you were actually doing once you arent doing it, I couldnt believe I could have these 5 or 10 minute interludes between activities (well that only started today, it was all service planning until then). OGing to grief and loss support in two week, its run by the h ospice guy. Is that a good thing? Maybe he just acilitates it and the rest of us just get togehter I dont know, need it now but I invited my regular walking buddies to come by tomorrow in case they were worried I beeded more time and space, they seemed towant to, so I hope that goes good and Id ont talk only about myself and my problems. They both have problmes soo but not this kind (retarded diaughter, unloving husband) and they loved my husband and my duaghter with her toghether and our family so they igireve as well. I dont want to bring peple down but maybe I should not be aftradi. I dont want to move to get away from the memories because I finally live somewhere. But how will I not keep everyihng form remoinding me of him, just like ine we nought a zoo the mvie. Will it just lessen and be a beuatiful memory. Hwy do I already look ahead. why why, oh dear I need the support group apparenlty. THankes andreas for being that today. HOpe you have nie talks withyour mom. Mine came to the service but didnt acutally a hve any time to talk to her at all and then she had to go back. Her health is bad and Iwant to aspend moere time with her but dont know how ill mange. Well wnjoy time awy and dont wrorry bout the comp;uter site, theyll help you do this right im sure. Its for the best for and open forumfor us to support each other. Thanks for praying and thinking of other people. I dont pray b ut I think of others and hpe they dont have worse stuggles than I such as a sick child or losing a child or have terrible sickness and pain that doesnt go away. Im sturing to support one of my friends on this site whos turggoes with the caregiving, told her ill e mail her in a few eweeks for some advice. if I have time. YOu keep going o.k. dont give up and know life is woth living for there is still so much beauty to see. Well both have to find others with similar pain so we dont feel so alone i think. Take care and tyr to feel some sense of 'NORMAL" for just s few minutes or seconds a day, soething from your old routine. Bye now

Report post

Hello M. southwife. Yep you got it. They are gone but we are still taking care. They are in our every thought and every action. It was amazing now that I look back on how time and energy consuming it all was. At the end, after 17 months of doing it alone I felt like I'd been turned inside out. it was then I wish I would have had some guidance on how to act with him. This is what I try to help with now for the ones coming. I couldn't think any more, I was so afraid, I knew I was losing him and I couldn't stop it, I couldn't sleep at night because he needed me every hour, I was so angry and he just took more and more from me. I wanted to run away, I would yell at him, Please stop all this i can't take it anymore! I wish I would have had someone telling me how much I was going to miss him once it was over and remind me how desperately he needed me. One woman on the site wrote me and said "someday you will know the worst day with him is better than a day without him" I was so burned out I couldn't understand what she meant...but I do today.
In the end they need us so much and it's then that we are at out worst as well. No matter how bad it gets try to be kind. They are dying and we will live always with the last days in our hearts.
Many are struggling right now. I send you my strength, my prayers. Talk to them and reaasure them that things are safe.
For all of us that are standing alone now I ask each day for grace and the wisdom to help myself and someone else. I know I will change. It's been almost 2 months now and the crushing weight on my chest has lessened it's death grip on my heart. Not much, but at least I can take a breath now. There are hours at a time when i don't cry and I couldn't do that before. I don't know where I'm going but I can at least stand up now and this is good.
I hope everyone does well today. Make the effort to be present in your life. Help someone else even if you think you can't. Visit someone, send a card or a note, take a walk. make the extra effort even tho you don't know where the strength will come from.
I send you my very best. I miss Andreas so very much. Love Ty

Report post

YPUP YUP, lie ymyself cry whenever it comes, looking at the baeutiful pictures of him. Still haent figured out what to do. with all the stuff, just rearrange it al littel at a time, pu t some here some ther but now now. LEae the arcards and flowers up for however long I fiue out how long. Yes. already tryiing to do or say somehting good to someone and jus tbe presesnnt with n y duagher, doing old routines with her whenver I cann that dont einvolve talking about him, also that seemed to open up the possibily that she ight actually talke about her feelings. She doesnt tdo that because she nneeds breajs from the dad thing. That yelling andall that you just described,she witnessed me dealing witha ll of it and it was exhausint for her, she knew i was tring but saw it was impossible. now she sees exacdlty what yoru saying, hes simply gone gone gone. So i didint talk baout it much just homework and cooking and soem of the bill workout problems related to death and all (we always talk about mone because I feel she needs to learn ab out it ) and the nsuddenlty she said idI dont know whay i have sasd sonags in my head before bed the last two days. HTsi is really wierd conig from a jusitn Beiber fan. Is aid oh I cat listen to any sad songs ILl get oo emotional , i didnt ven say dad she knw what I meant and then she volunteered that they amde her think about dad but she csouldbt get them out of hter hea. maybe its her subliminal moind creating a way to grieve. This 14 yar old isnt a greieving, dark or emotional type, jus t loes to be very happy and outgoing and optimistc about life. So this whole experience os the brain tumour is so wierd for her. But it has biut her compmassion to a poit, b ut kids can get compassion overload too, abd she has it from all the caregiing and waitnig ofor the caregiver brburnou ( just a moinute I hae to get sotmeting for daddy, etc. ) But Im glad to hear she feel that sad song. It helps her to be more compoassionate to others who have a worse struggle like her best freind who lost her mom. That best friend now says my daugher is the only person she can trust. and i think thats a good thing. Tursting someonew when your whole world has shattered. THats what keep some kids from tgaking there own lives. I valeu life too much to ever onsider taking my own, but this is the hardest thing to get throigh. I think well have to work thorigh the caregiver guiltm,even thogh we did everything we were supposed to, it was that ywelling and yelling beacuese we were so patient forever ad foerver and thenwe just had to yell. dMY daughter used to hear it but she forgave me for it for she saw how hard i treid and how he coudlnt help it but seemed like he could. Oh ty, good for yout o ope n oup this forum. If eel better already just talking away. My friends didnt scome by today,somthing porbably came up. I emailed my nephew who couldnt coe to the service and told him how i will keep in toch with him better and send memebtos of the uncle he didnt knwo very well. Ithink it will be osrt of fun to deelp theess new reationships, but I feel we need to choose what we do with our time wiselly huh> not sure if we should just coast alon becasuewe are so tiresd or hit the ground running. PRobably somewher ibbetween. Trying to be graceful to myself too, but its hard. Its america and we are programmed go go go suceed suceed even i nthe face of rididcuour adversity. Turust yourself use yoru insinct. Keep listening and learning. Gonna work on that brain tumour end stage problem. dIVe already told alot of people what to watch for. dI really didint know. Hte g.ps are glueless on brain tumour a(drabged heim there the week before he died and they didint even notice his eyes clsoing sleepiness thing or nything) nd the neruosiurgion only want s to operaste and say goodbye and then operate some more or fry you r brain, Nowher in between except the rehab dottor and he was hard to get to about the end stage thing. Hopspice was too haloween like and negative forboding and serioius about prevenitng lawsuites so mkaing lists of what i had to doas far as follow ups and if i ddint id go to a bad place,etc. staring at me like i was in denial just because i also wanted to cae for him and just perhaps hed be ok so I treated him like not someone whos just about to die when he was actually perfectly health (acutlly was perfecctly health util a few days before the .e.r.as far as vitals go) just nothing ratinoal and straighforward that made logial sense. So i was on my own in the decision making. THink I actually did a great job given the choices, the rural area we live and the gfragmented care of good ol usa. well rambling i go. thanks for listening. Talk to your frends it really helps, im llarning to feel peoples reactions and recieve that graciously , its kid of a good feleling that if effects others too so I dont feel alone. Hope we awill all learn to remember more of the good times as time goe by.

Report post

Saw a grief counselor on Thursday and she was nice. I will try it again next week. Is anyone else seeking outside help with their loss? Please share what you know. Thanks Ty

Report post

Just wanted to sign-in here so I will start getting all the updates from this new site. We are now in our second week of Hospice and Mike is getting weaker but still lucid. Has trouble putting thoughts together when asked a question - but eventually gets his point across. He is no longer able to walk and now has to use a wheelchair to get around - only seems to stay up for 10 - 15 minutes at a time and then asks to go back to bed. I need to go - I'll be back on later.

Debbie

Report post

Ty, our loscal hospital has a grief and loss support group every month on two different time slots. The next one is second week of November and I definetily plan aon going. Let me know how yours goes, Im worried there will peple with lost their child there ,but maybe i shouldnt worry we could probably lerarn something from them. But I think they have there own support group becuase its so bad for them or something. Anyway I think it will be good you are going Isnt it wierd, all of this feels more wierd imbetween the sadness and pain, like your wtaching amovies hyou dont want to be in I think, I was always making jokes about support groups even though I knew intellectually they are valubale, could mever ever picture myself in one. COuld handle almost anything, even cancer but I was looking at first for one and couldnt find one and the cance support group was taken over my the breast peple. Just being funny here , bu the way humour seem s to help and dont feel guilty using it, peple ;may find it wierd but its health to laugh and good for the immune system. I m trying to laught wth the teenagers a littel or juist at a silly part of a movie thery are watching. ANyway, this supprot group is run my hospice director, but I bet it sort of runs itself. I would think everyone will be kind and supportiveanyway it looks like yours is a just one person councelot? Id really like that maybe but only if she actually had experience it,kind of like those alcoholic councelors.. Ive hearsd they give different advice if they have atually experienced it. But then again it would be nie to go to someone who would just listen instead of maybe the sharing type thing wiell proably be d oig at a support contnues. YOu should consider writing a blog or something, you are a good writer. I plan on startin my column back with th local newspaper soetime but not sure how to approach them because I used to write about parenting. Not sure if Iwant to take thise angle or if it will be too depressing for readers. swell see. Anywaym back to the movie were in, hope it keeps teaching us somthing valuable but at this point Im just not sure about any;ting except that Im healthy and I beed to take care of my daughter its a lotalot alot of pressure so afraid somthing will happen to me and she will be left stranded. that is my biggest fear rthat I need to talk to them about at the group and I already did talk to the lawyer about that cocnern. we just dont habe slot of backup for her so I so worry about my health even though Im realtively healthy. Of course I have ignored all my basi checkups since the tumour aame and even my daughters checkups and of course she comes first. Its so bad how we didint take good care of ourselvesee even thoughwe trei we just wanted them to survive, so desperate we were for all tha. Wlel Let me know how it goes with the councelor.next t ime and what kind of set up and how in the wporld do you pay for it. Oh yeah, life insurance lets do abig discussion on it. GEtting lots of good info. It sounds bad but the money issue will make a ig difference in our abihlity to deal with this stress of what werw going throughI think, so I hope we can help each other handle that part right. That money thing is ery complicated at this point but Im leanig this week that maybe its not as comlicaed as it would have been in the long run with them being disabdle. Jurys out though there. would sure be nice to spend more time helping others or contruibting to society or with thobbies or remembering our husband and jgreieving rather thann 24 7 money and paperwork and money an amoney and electicty and utilites again. SPeaking of whcih, are any of you on the east cosat? If you are I realize we are so luckly here in Oregon. Hydropower free and easy and powers nevver out even during bidg strom its restored realy quick. were so spoiled I hope you are safe if you were in the strom.Stay strong.

Report post

Hi Ty. I'm so glad you went to see a grief counselor. Maybe she can help you with the guilt you feel. Sometimes talking to someone on a one-to-one basis lets you focus on yourself and not on several people going thru the same grief. I have always found that speaking to a therapist lets you spill your guts out without any judgement or even sympathy (don't you get tired of all the "I'm so sorry" that people instinctively say? Sometimes you just need to be able to talk, cry, get angry, complain, etc, without people getting uncomfortable. I certainly plan on seeing a therapist at the end because I know I'll need one to express myself without scaring people off. Because I know I'll feel guilty (although we ALL do ALL we can), mad, and exhausted.

IN the meantime, Jack gets his results of his latest MRI on Monday, and I'm scared shitless of the results. Keeping all my digits crossed and praying that he'll not have any progression. We're supposed to leave for our annual 4 month trip to Peru on Nov. 19th, and I can't even get myself to pull the suitcases out of the attic until I know the results tomorrow. My stomach is in knots but trying my best to keep it all to myself so as to not freak Jack out.

I'll be posting tomorrow as soon as I know the results. God bless us all. Trish

Report post

Hi Trish. I'll be thrilled if it come to pass that you can go on your trip. As you go to Peru often it sounds like, I hope you know the medical system there and what it will offer you if something happens. That's the trouble with this damn cancer. Things seem OK and then out of the blue everything falls apart and it happens FAST! Just make sure you understand what's around you when you go there. I have been looking to take a trip as well, just to get out of here for a while and my neighbors are from Peru and they are the sweetest people. They said I'd probably have a good time if i visited there, so I have a friend who's a travel agent looking into it for me. On the friend page drop me a note and tell me a good location and what it's like.
I will pray that the results now are good. I never put too much into the tests I just looked at Andreas and how he was functioning. Right up to the end he never showed any significant growth or activity ( except the edema wouldn't go away) in the MRI, but he deteriorated anyway. Just think CLEAR! and hope it comes to pass!
Good luck tomorrow I'll be waiting to hear. loveTy

Report post

Ty- I have read Andreas and your posts a couple of times. They have given me such insight and a sense of sharing with someone else of just what I am going through and what is to come. October 22, my husband decided he was not continuing the Avastin treatments. The MRI was good but he was losing weight, weak, and feeling bad all the time. After every treatment he felt worse. His hope is to discontinue the treatments and have a few weeks of feeling a little better before . . . He is after quality instead of quantity. Not sure how that will play out, although this weekend he has been feeling good which hasn't happen in a long time. His brother came in from St. Louis to spend time with him and it has been great. They are watching football now, probably the last time they will share that experience. It's so odd that although you want them to have a good day, you know that hammer is going to drop and it is hard to get past that and enjoy the day.

Thank you Ty for sharing your intermost thoughts. Your husband was so young. It is soooo unfair. My husband just turned 59 and I am bitter. You are in the prime of your life and to have this happen! I can't imagine dealing with this in my 40's.

I hope you can get away. You certainly deserve it!

Report post

Hello my dear, yes everyone seems to think that I'm young-- ahhhh but I'm not. I was much older than Andreas so this has hit me very hard because going out now and trying to find a job or restart things is not really an option for me anymore. SS is approaching and medicare. He just kept me young. I certainly feel like an old woman today but hopefully, I'll work through it. Thay was one thing the fitness business did for me over the years. It kept me fit and when I needed my body to perform it did. it carried me thru al the stress of the past 18 months, kept me together and never failed me. I'm forever grateful to my body for all it has done for me. It is the one thing I've already put back together on a tiny scale in comparrison to what I had before but as of this week I'm teaching 5 exercise classes again and they cover water, strength, stretch, core and tai chi. This gives me a good balance.
The decision you are now facing is difficult but wise. I probably could have forced more treatment situations but I had lived thru all of them with him and I knew they were no longer helping him. His body was tortured with poisons and drugs. He had had enough and I wasn't going to watch him suffer anymore. We did stay on the seizure drugs because i wanted to try and keep them at bay as long as I could because he had suffered so much from them while we were in Doha. I also knew that when they began again it would be close to the end. That was exactly how it happened.
As i have written and others as well, they start seeing family and old friends and they begin to say goodbye in their own way. Football is good and I'm glad he is enjoying himself.
There comes the moment when you just have to look at one another and say "It's Ok. Let's go this way and let it be." They do feel better for a while and this is good. Their poor bodies get a rest but at the same time the cancer is wide awake. I hesitated before I wrote that but you need to be in reality now. The game will change. No one knows how or when but it will change. Lets hope you have lots of weeks left where he feels better and you can enjoy his company.
Do as many fun and good things as he can while it lasts. I tried taking Andreas to light movies (he slept thru them) we went to dinner ( I took him in a wheelchair to help him not be so stressed) I took him for short drives, I included him in every decision that had to be made, ( whether it was over the groceries or the bank) I had a couple of close friends over for easy dinners, I made him walk everyday!!!!! I let him go out to the corner or around the block with out me (but i watched like a hawk) I went for walks with him and held his hand, (I wish I had done more of those) I shaved him and bathed him everyday and always told him how handsome he was. i tried every way I could to keep him independent for as long as it was possible. I did everything I could as so many of us have done.
I wish you the very best. Write as things change or you see things differently. I'm sure someone has seen it or has an idea how to help you. so many strong and wonderful people here all brought to together in trying to help one another in the most critical situation we have faced in our lives. In all the tragedy I find it amazingly interesting. I'm always here for you as so many others are. Love Ty

Report post

Good you did all those things with him. We were not so fortunate the last three weeks his transfers were so difficult and his confusion (frontal lobe) was getting so werd it was difficult to move from point a to .b. But im ade sure we got him outside every day to the porch with the dog Sam, this was the highpoint of the day. ans yes, keep involving thme in every decision or at least be respectufl when you haet to make one for them (frontal lobe again) TY YOU GIVE such good advice to th others especially about the vitals looking o.k. then Bam, couldnt barely respond and react especially if you are doing this alone. YOu also have to eat and go to the barthroom just like an infac when you are takin gcare of one, so its hard to be on top of everything all the time. So evryone, listen to Ty, dont be too hard on yourself but be aware of where to go n an aemergecy and hae that dang advanced direrive done, signed, I had the second signatur done as we left for the e.r just in time becaue the lawyer advised doing that before the will if we were short on time. Excellent advice, no porblems or worries at the hospital. ake sure you know whether the hospital would honor it or what kind of shrot form they ave for you to fill out while your admitting them, and put on there that you want to be the one to speak for them if they cant! Believe me not all nurses get this fact even if they cant talk. They are tring to be respectufl to the patient band that is good but it sometimes backfires badly if they dont trust the caregiver. Its eemed to be very individula, ,depending if the nurse or doctor ehemsve had been a spous or parent and had an idea what that is lieke to know wsomeon so well you do know what they want, or to realize ouve been there doing this brain tumour thing for o.k how long by; the time you actually get in to the hospital. Anyway, take it day to day Map 62 and enjoy each other. Dont be scared just be prepared. And try tocommunicate with . your extended family if you have time Try to let them know in whateer is an appropreate way about what may be coming so they an at least see him and enjoy him an get an idea of what you are dealing with. I found it so hard to do this due to everone so scaered and busy and me being the busiest one with all the caregiving. Needing theminvoleved but no time to logisitcally cooordinate invlovling them. THen some never could came, and only came to the service. The sister he hadnt barely talked to in 10 years, not at the service but I finally get to talk to her after he dies to explain to her why he never calls her. THis is not the fun part of my week. But it was good for both of us for the inlaw s usually know what the problem is but cant convince th spouses to get along with theri families typical uniersal situation. INlaws arent usually really the porblem in the marrieage its the immediate family very often. Thats wh they married you the normal one to get away from the dysufntional family they grew up with sometimes. wThe other brother who he hadnt seen in 29 yeards who shows up at the service, feeling so guilty he hadnt made it out the month before when it rough bu t he was still aroeund. ( he had been planning to see his bpoor brothr in the wheelchair feeling guilty for the absence, not all his fault, then the;y got busy that weekend a nd moved ) Next time, hes at a service for his brother. Try to involve th family. Its true you will need them. Mine have been nice to me for at least a week on my side (thats a record for me, ot curiticising anything my 84 uear old mom is themaster of that oh dear what do i do shes 04 and is mad I havent had time tocall the congressman aout the location of my diability check i havent recieved yet even though he died and ive been a little busy with that ) at) and his ( the inlaws) surprisingly wonderful for me. YOu raand they realize that you the widowed inlaw is theri only connection with him they have left and they will lean on you and you on them. It is truly a learning experience fo me, the realtionships. that are evolving now. Every interation you have up until his last day is dso important and dont let anyone convinee you otherwise. Evven the friends you are condfiding in of your troubles with your husband, its ok/ for at least when he passes they will know how you cared and how hard you tried for him. Its so hard to keep a journal. wish i ha, hope you do, it will be comforting for your children if you have any to know ofl your ounconditional love for your spouse. Well do what you need to and take care of yourself if its possible. NOt sure if it is, but try.Congrats to you for using your head and instisct on the drugs. we never had any of them and everything we expereince was real, what it was not from driugs except for the antiseizures but like Ty said that was a calculated tradeoff we had to make as well, big seizures just not a good option for the person with grapefruit growing back into the head. Not going there, but I cant imagine this deal with druggs too. We just plain avoided all of it. TImeline of death about what the guy said at the beginnig, it might or mightnot have gieven us a few more moths but at what type of ;quiality. At least in July, when he had a healthy little window and might have been able to handle drugs ( he had major speech and motor cord two months in hospital learnig to sit up and wlak) at least we used that time for him tow be on the porch and learn to cane walk and do dishes standing up im the kitchen with the wheelchair behind him. Believe me, it was great to joke baout himdoing thedishes. Heloved that he could do something, and at least he could start to read again and do crossword puzzles ad enjoy the sunshiien and go the toilt by himself finally in August. I really think the drugs wuold have slowed all that down, those few quality weeks we had in the summer. So we jist didint do it. DIdnt even get our first mri until September and indeed it showed a lot of growth and moving to the frontal lone and some brain swelling,,but that just concured wth the symtoms he was having. Ill never know whether that was a fctor i anyting. The brain stem big midline shift was the factor in his passing according to the doctor who examined him thoroughly as he passed into a coma at the hospital,and apparenlty that didint happen to my husband until bEginning of october beasue it showed up when we went to the er on OCtober12, so who knows what happened but liek ty said that was fast,fdrugs or no drugs. Use you r instict and you know your life and your world, your marrieage and your life the dotors dont own you or owe you anything or you woe them anything and dont ebery second guess yourself. GOod luck to you. I hope for you have many many more enjoyable footbll games and just t o wathc him enjoy himself while he can.Take good care

Report post

Good news! Jack's mri was clear. The doc says there has been no progression. We read the radiology report and it said there were no enhancements. He is now on a 3-month MRI cycle, so the next MRI will be in Peru in February. Thankfully, I'm aware of the heath care system in Peru and I already have asked the doc here to provide me with an electronic copy of all of Jack's records to take with me. I feel like we've been given a gift of another three months to do as we please. I know there are bleak days ahead so, by God, I'm going to make the best of these.
God bless us all. Trish

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support ABTA

Together with your help, the American Brain Tumor Association will fund more research and reach more people, with the shared goal of improving, extending and ultimately saving lives. With your gift, those coping with a brain tumor diagnosis will know -- more than ever -- that they are not alone.

Donate to the American Brain Tumor Association

Discussion topics

More from ABTA

Community leaders