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Gizzy'n me
Veteran Member


Date Joined Jun 2013
Total Posts : 1870
   Posted 9/9/2013 1:35 PM (GMT -6)   
Another update .....
 
   I was over to see Mom on Saturday about 1pm and most of the residents were sitting in the Great Room (large TV room) ... music was on and many were sleeping (right after lunch). While we stayed in that room, my Mother started to complain ... about almost everything ... from the food to why her husband died 18-years ago to why didn't she have a big family ... and so on for close to an hour.
   Then, in the Dining Room, one of the caregivers started a bingo game - but one like I've never seen before. My Mother heard what was going on and eventually wanted to go into the DR to play the bingo.
   The bingo cards had names of songs on it ... and the caregiver would play a song on a portable CD player (or maybe computerized chips with songs on them). The song would play for 15 to 20 seconds and stop. And then the care-giver would ask what the name of the song was. Someone would usually know, and the name was repeated, so if the song title was on the bingo card, the resident could place a small cup on the title.
   And it was then played just like bingo ... either all corners or diagonal or 4-up or 4-across.
   Then I noticed something. Everyone playing it were enjoying themselves - including Mom. I stayed for close to another hour ... and not one complaint about anything.
 
   She was getting bored just sitting there before. Activities do mean a lot - even if, at first, the resident doesn't want to participate. Then I found out that morning, they were throwing a balloon around from one person to another - before lunch.
   So .... if you have someone who keeps resisting activities ... please stay with it. It is so much better than to hibernate in their rooms. 

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 9/9/2013 3:34 PM (GMT -6)   
How are you feeling today Gizz? I am back in chemotherapy, another round yet again. How do I handle it? With my faith in God, and my support system. One thing the doctors never took away was my sense of humor. Awhile back my oncologist yelled "this is serious, you are truly really sick" and my reply was and in front of 2 other doctors happened to be "ya think? I knew I was in chemotherapy for a reason!" At first, I admit it back in 2008 I was in denial. 2009, a friend pulled me out of my depression, and lack of faith. My friend had me promise to go to church, and he lived at the time in a different country on a missionary trip. I went, and the sermon hit home to my heart. I realized I had my humor, I was alive, and this is just merely a test in my life. I now think positive, and if I'm having a bad day, and trust me some days I just cry because I am just so tired of being sick. I call it my pity party. My love, he has figured out how to distract me out of my pity party though. He always knows how to get me to laugh and smile again. I only met my love earlier this year, and it was truly fate we met. I made a trip on Greyhound, and my return ticket was stolen. I checked on tickets again, and Amtrak happened to be cheaper. The nearest train station was 5 hours away from where I was so I had to take their coach bus. Love at first site, the bus driver and I. I had an overnight layover so I asked him out - and he accepted. Fate be, he only started driving that bus a few months before we met. He had been living in New York and had a 20 year marriage fall apart (she routinely cheated on him). He decided to move to his home town and found that job. I went home , 300 miles the next day. Daily he and I talk like old friends, known each other forever. Two weeks passed, and he asked me to come back another 300 miles to see him and meet his family. He must of liked me a lot, because he drove 300 miles to pick me up and another 300 miles back home! He has been an amazing support to me and we love each other dearly.
Gizzy, you must take care of yourself hon. I am so glad your mother is doing so well. And remember, you can always talk to me and post til your heart is content (within forum rules of course) here. Hugss.
~Moderator - Allergies & Asthma , Alzheimer's~
"The Walking Medical Mystery"/~Medical Caregiver and Doctors Worse Nightmare~/ And Doctor's Worse Nightmare DX: Lactose Intolerance, Gluten Sensitive, ADD, Fibromyalgia, Carpel Tunnel, Arthritis, Clasterphobia, Anxiety, Diabetes Type II, Grave's Disease, Tachycardia, GERD, PCOS, Migraines, UARS, Anterior Scleritis, Orbital Tumor

Gizzy'n me
Veteran Member


Date Joined Jun 2013
Total Posts : 1870
   Posted 9/10/2013 9:56 AM (GMT -6)   
Hello SmurfyShadow .....
 
   Thank you so much for your concern and your uplifting personal story. I am sorry to hear you're on chemo. In a way, I wish I was back on it - instead of the alternate that my oncologist wants. But, tomorrow, I am due for a second opinion from another oncologist ... and that was with the blessing of my oncologists office - especially my Nurse Practitioner in that office.
   Your thoughts on faith or Faith are well taken. I'm there. I have been since going into the hospital in January of 2011 after a 911 call. As it is said, sometimes it takes a life-shaking situation to find your Faith. And that in itself is a Blessing.
   Say ..... your story .... about finding someone special ... is great. Thank you for sharing that. You spoke about "some days you just cry". Well, let me tell you ... first, I've always been an emotional person. And then, when Lupron (a hormone therapy shot) is added ... it doesn't take much to tear up! And hot flashes go with that treatment also.
   I have, so far, gone thru two different oral chemos ... and one chemo by IV into a port in my chest. What is being proposed will require quite a bit of intense medical trips, and I'm not sure it will do me any good at all - may not even extend my life by more than a couple of months, if that.
But, I need to wait for that second opinion.
   How I'm feeling now physically - is OK. I am always tired - but that's in the meds. Emotionally, the Provenge treatment is testing that ... but I do have an appointment with a psycologist in 11-more days to help with the emotional aspect. And two more appointments will follow.
 
   So, again ..... thanks for your post reply. I am so glad you have a special person in your life - for caring and loving and support.
 
Rob
 
 
Initial Dx of PCa in 2003/2004
Radiation (5x5wks) & Brachytherapy (96 seeds) in 2004
Low PSA for 6-years
Casodex first - then Lupron from mid-2011 to current
Zytiga from January 2012 (5-months) - PSA increase
Prednisone early 2012 & Xgeva from mid 2012
Taxotere from August 2012 (30-weeks) - PSA from 54+ to 12+
No chemo (8-wks) - PSA from 12+ to over 23
Xtandi - June to Aug - 2013 - PSA to 66.5

Gizzy'n me
Veteran Member


Date Joined Jun 2013
Total Posts : 1870
   Posted 9/25/2013 10:31 AM (GMT -6)   
Two updates ..........
 
#1) to SmurfyShadow ...
 
   In the past two to three weeks, I did get a second opinion on Provenge from a specialist who works with that tretment often. His feelings were that Provenge would probably not do me any good ... and he was surprised how well I reacted to 30-months of the taxotere (chemo) in 2012/2013 - and that my recent bonescan showed very little difference from the last bonescan in October 2011 ... which is GOOD!
   As a result of the second opinion, I decided not to proceed with the Provenge. I am getting sick of foreign objects being put into my body. The Provenge would have required at least one (maybe two) catheters put into my chest for major blood draws ... and I already have a port in my chest for the chemo injections. So, as of this Friday, I will start a different type of chemo. Hopefully, this one will give me some additional hope for a future.
 
#2) about Mom ...
 
   I was over to see her last Saturday along with my daughter, and then an old friend of hers came too. It was Mom's birthday. When I think back of the year she has been in this Assisted Living Home, she really has gotten noticeably less receptive to the things going on around her.
   She is now, completely confined to a wheelchair when wanting to move. The walker doesn't work anymore. I notice that simple things like eating, are getting harder for her. That is, she drops food quite a bit and doesn't realize it.
   My daughter has had a recent job offer from an old boss of hers - although it wouldn't start until next March. But ... if she takes it, I don't know what I would do. My cancer is terminal. My Mother may outlive me, and if I'm gone, who is going to take care of the most rudimentory things for Mom?
   This may not become a factor ...... but, if it does ....... there's a problem coming down the road. Who handles Mom's money? Who pays the bills? Who makes the decisions when they're needed? And - who goes to see Mom? Mom's two closest next door neighbors (from where she used to live) have not visited her once yet. I don't expect they ever will. And yet, Mom, in her dementia state, still thinks these are two of the best people in the world.
   Actually, her old next door neighbor hasn't even called me once to find out how Mom is doing! What is wrong with people? Did they get what they wanted from her when she was living at home with dementia? And now ...... bye!!!!! Oh yes, and all of her jewelry was gone when we went thru her house this past Summer preparing it for sale. A coincidence?
   Sorry .... just in kind of a bad state of mind right now .... and sorry to see my Mother close to that of a living vegetable. Hey .... she was 96 on Saturday. But ... what's that about a qulity life?
 
Hope everyone's experiences are a little better ............!!!
    

Gizzy'n me
Veteran Member


Date Joined Jun 2013
Total Posts : 1870
   Posted 10/8/2013 10:55 AM (GMT -6)   
A brief update from two weeks ago .......
 
   I was over to see Mom yesterday at what normally is one of the better times - about 1pm! They were just beginning to start a bingo program - or almost marathon. I sat in with a bingo card - next to Mom.
   The bingo went on for nearly 2-hours. Most seemed to have a good time. Mom was detached however. She did have a difficult time keeping up with the others - and her hands would sometimes move some of the bingo pieces by mistake.
   Either she has declined noticeably in the past two weeks or ????.
 
   I, unfortunately started a new chemo therapy 11-days ago ... and my Oncology Nurse told me not to be around anyone with possible infections - like in a nursing home or similar environment. I stayed away for one week, found out last Friday what my own WBC was (white blood count) ... then decided to see her yesterday and try to keep a foot or two away from anyone. This will go on for an unknown period of time - a new treatment every three weeks.
 
   Once again, I don't know what to do. I think I'll try staying away for the first 10 to 12-days after each chemo treatment. Probably should ask my doctor. Nobody else goes to see her very often.
   My youngest daughter and one of my mothers friends each go to see her about once every two months. And still, after over a year, my mothers best two neighbors have not gone to see her yet ... not once!
 
   Oh, I forgot, I do bring my dog over to see Mom every month or two. And she does enjoy that. She asked about him and my daughter yesterday!
 
   Maybe next week will be better.
 

family care
New Member


Date Joined Aug 2013
Total Posts : 2
   Posted 10/8/2013 11:58 AM (GMT -6)   
Gizzy'n me said...
Hello ...
I kind of hit a brick wall yesterday when going to see my mother at her "assisted living home for dimentia". But first, a little background:

Mom was living alone (at her insistance) from 1995 to mid-2011 - and was driving her car for approximately that timeframe ... until she fell in her Kitchen and could not get up. She went into the hospital for observation and when released, her doctor said she needed 24/7 care in her home. That was at the age of 93!
For the next 15-months, she did have a 24/7 caregiver living in her home - and actually kind of got used to it! I think maybe it was a daughter-like relationship for her - since the caregiver was in her mid-50's. However, during those months, Mom had three different episodes - all in the late evening - all screaming that someone was in her home trying to kill her.
The last episode was very bad, she was admitted into the psych ward of the local hospital ... and after over 4-weeks, the psychiatrist and her primary doctor both said she needed to go into a home that had nursing care or with a RN on staff. Mom's caregivers at home, were no longer able to contend with the level of dimentia - in the psychiatrists opinion.
So ... the search for a home started ... and luckily one was found within two weeks or so that specialized in dimentia patients - and that had a lot of "home-y" type of things going on there. She was moved from the hospital to the Assisted Living home last September.

I suppose the very typical reactions happened - and for months - on and off. That is, she would ask "how long am I going to be here" or "when am I going to go home"? But, gradually she did get used to many of the nice aspects of this Assisted Living home - and I saw her enjoying herself very often when visiting.
Now ... over the course of the past 26-months of care (either in her own home or in the AL home) - her savings have dwindled down to pretty low levels. For 10-months now, her old home has been vacant and has been costing $500. or so/month to just barely maintain - with taxes, insurance and basic utilities.
Since she will never be going back home, and with her money account getting smaller, her home had to be put on the market for sale. The months of May and June were spent doing fairly minor things to her home - and it went on the market a few weeks ago. The home went into contract in a short period of time - with a closing set-up for the end of this month.
First ... the money from the sale of her home will allow her to stay in her current AL home - and delay or avoid going into a Medicaid Nursing Home. Second ... it is one responsibility off my back - going to her house 3x a week the past two months and once a week for the past 18-years. I am going thru major medical problems myself - including advanced prostate cancer (2+ years), kidney failure (2+ years) and COPD (5+ years).

Yesterday, I brought over to Mom some lighter weight clothes - her request from last week-end - in the colors she asked for. She immediately got nasty with me, wanted for us to go into her room for some privacy - and then it escalated to a level I hadn't seen for at least a year.
She did make up a few innocent-type of stories (signs of her deteriorating dimentia I think) - and then (as she had been doing in the past for at least the last 15-years) complained to me that she doesn't know why she didn't have a daughter because "they do so much more for their mothers than sons do"! It's been well over a year since I've heard that criticism ... but she was telling me that over and over - for at least the past 15-years.
I did see a therapist, 18-years ago, for a number of things going on at the time - and the therapist told me my mother has been laying a guilt trip onto me since I was a kid! So ... this isn't from dimentia!
I do not have any brothers or sisters (hardly my fault) - my Mom had been married three times and was an alcoholic (also hardly my fault) - and now ... my question for me is:

"What to do"???

Any thoughts would be appreciated!

family care
New Member


Date Joined Aug 2013
Total Posts : 2
   Posted 10/8/2013 12:06 PM (GMT -6)   
you need somebody can look for your mother when you can not see or visit your mother...will be good if your mother not so far from you.

Gizzy'n me
Veteran Member


Date Joined Jun 2013
Total Posts : 1870
   Posted 10/8/2013 2:22 PM (GMT -6)   
Hello family care ...........
 
   I think you are replying to my latest post ... even though you showed my first post ... and there are a few months betweeen those posts, as well as, many conditions changed.
 
   It sounds as though you have not had any experience looking for and reviewing the various types of elderly care facilities. There are many types, there are many cost ranges and they're not all close by.
   One of the facilities, a nursing home, was close to my house. Amoung other things, the patients did not have private bathrooms. And there were few, if any, programs to stimulate the mind. It was awful - like a dungeon - but it was close to my home. And it was a Nursing Home, much different than many other types of elderly care facilities.
   I looked at and reviewed 5 other facilities, anywhere from 10-miles away to 20-miles away. Only one of those facilities specialized in care for both dementia and parkinsons (and nothing elsse)! It was perfect for the type of care ... and the next closest of it's type was over 25-miles away.
 
   Now .... how do you propose I find someone to visit my Mother? I can't seem to shame both of her close neighbors that they really should visit her. I can't force the one friend of my mother to go see her more often ... same with my daughter.
   We have a small family. I have no brothers or sisters ... and I had absolutely nothing to do with that! My Dad, Step-father, Aunt and Uncle are all dead. They have been for 15-years or more.
   And the people at this facility, are far more qualified to take care of any of my Mothers needs than anyone I personally know. So you are making a very careless point in what "I need"!
   Actually, I need a vacation .... haven't had a real one for 20-years. I had been calling my Mother daily for close to 17-years and seeing her at least weekly for the same amount of time. Been paying all her bills for close to 4-years ... doing her taxes for 18-years. Etc. etc. etc.!!!!
 
   Enough said!
 
Initial Dx of PCa in 2003/2004
Radiation (5x5wks) & Brachytherapy (96 seeds) in 2004
Low PSA for 6-years then Casodex briefly
Lupron from 2011 to current
Zytiga 2012 (5-months) - PSA increase
Prednisone & Xgeva from 2012
Taxotere - August 2012 (30-weeks) - PSA from 54+ to 12+
No chemo (8-wks) - PSA to over 23
Xtandi - June to Aug - 2013 - PSA increase
Jevtana + Lexapro - from October 2013

Irish Babe
Veteran Member


Date Joined May 2007
Total Posts : 1380
   Posted 10/9/2013 9:56 PM (GMT -6)   
Rob,
 
I know this is hard for you right now on so many levels. I have to say, I think you are a tremendous son. You have been caring for your mother all these yrs. Thankfully, she is in a place right now where she is receiving good care. I know you want to visit to be sure she continues to be well cared for and also just to visit.
 
This is also a time when you need to protect yourself during these treatments. I don't think it's 'selfish' to protect your health right now. Maybe after talking w/ your dr, you might get a better idea of how to protect yourself when you do visit your mother again. Pls give Gizzy a scratch on the belly for me.
 
My prayers are w/ you and your mother.
 
God bless.  Alice.

Gizzy'n me
Veteran Member


Date Joined Jun 2013
Total Posts : 1870
   Posted 10/10/2013 8:06 AM (GMT -6)   
Thank you Alice ...........
 
   I have not run this past the oncology office yet, but what I'm planning on doing is missing the first week after the chemo, then going to the next two weeks ... since the white blood count (WBC) should increase naturally over the course of a short period.
   The chemo is in 3-week cycles ... unknown regarding how long ... and from what I saw Monday, my Mother has lost virtually all sense of time. And that's just in the past month or two.
   I've been brushing out Gizzy .... will be going in for a bath and grooming and nails cut/filed tomorrow .... and will take him to see Mom next Tuesday. She asks about him ... and she loves to see him!
 
Have a great day ............................................  Rob & Giz
 
 

Gizzy'n me
Veteran Member


Date Joined Jun 2013
Total Posts : 1870
   Posted 10/12/2013 8:46 AM (GMT -6)   
A last minute decision ......
 
   My dog, Gizzy was at the groomer for the whole morning yesterday ... and when I picked him up, I decided "let's go see Grandma (my Mother)! We got over there by 2pm and found that they were having enertainment that day. They have an entertainer come over about 6 times a month - a different one each time during the month.
   This time it was the Elvis Impersonator. Mom always liked Elvis. I had not heard this impersonator before. When we got there, Mom hardly noticed us at first. But we all sat down for an hour for the show ... and really had an enjoyable time.
   Everything was good .... except I noticed some disorientation. My Mother was really concerned about how she was going to get to her building. There are four small buildings there and the shows given alternate in building locations.
   But it was 76 degrees out, bright and sunny .... and I know that one of the caregivers wheeled her tothis building just before I got there. So. after I told her - "no one is going to leave you here ... the care-givers have a lot of people to bring back". She was good with that, and within 10-minutes she was being brought back to her house (as she calls it).
 
   Bottom line .......... she does think of her building now as her house. And she does know and realize she does need the caregiver for help. Not just for dressing, bathroom stuff or showers - but all of the daily living needs. She has finally accepted her limitations. A big hurdle has been overcome ... and she really does now enjoy where she's at.
 
   For those of you who have a loved one with dementia ....... there can be hope for that loved one to still have some kind of enjoyment in life.
 
Rob
 

Gizzy'n me
Veteran Member


Date Joined Jun 2013
Total Posts : 1870
   Posted 10/31/2013 12:28 PM (GMT -6)   
A halloween update ........
 
   I wish I could have gone over to see Mom this week ... would have liked to have seen the decorations they did for the holiday. The residents or patients are kept pretty busy there with different but simple forms of artwork.
   But, in accordance with my Oncologist, I can only go over there when my WBC (white blood count) is high enough to withstand all the potential germs that are there or in any hospital either.
   So .... next week is a busy one .... blood tests on Monday, EKG on Tuesday, See Mom on Wednesday, Kidney stent replacement surgery on Thursday, 3-hour chemo on Friday and to the hospital for a dressing change on Saturday.
   Good thing Mom's memory is so bad now. She couldn't put any of this together .... and it would be very confusing to her.
   And life goes on.
 
Rob
 

Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 10/31/2013 1:14 PM (GMT -6)   
Hey Rob, just wanted you to know I'll be sending good vibes for all of your medical visits next week. I will say that you are such a positive person, that you keep me positive too. Hang in and take care...give Gizzy a pet and hug for me.

Gizzy'n me
Veteran Member


Date Joined Jun 2013
Total Posts : 1870
   Posted 11/19/2013 9:34 AM (GMT -6)   
A new chapter starts ......
 
   While I lost nearly all of my close relatives 15 to 18-years ago, I never did have to go thru this situation. I guess there is a good chance many of us will need to sometime in our lives though.
   Yesterday .... I met with a hospice representative. It was for Mom. I had received 4-calls Sunday from the Home for Dementia. Mom had a bad day and by the 4th call, the nurse suggested my talking to hospice.
   I did go over there yesterday for the meeting .... reviewed and signed the necessary paperwork ... and then got a much better idea of exactly what hospice does and doesn't do.
   I did receive a call later that day - stating that the hospice care was approved both by the doctors and by medicare. And .... all of a sudden, Mom was better yesterday.
   The nurse stated it was likely a mini-stroke .... or it could have been something a little greater than a mini-stroke. It could be a matter of days - but more than likely a matter of weeks or more - possibly even months. Everything is such an unknown ... and she is a strong woman.
   But .... I guess ...... we're on notice! Until the past 3-years of obvious dementia ...... she has lived a very long and pretty healthy life. Only two minor surgeries in her life - and she's 96-years old! No cancer - never a heart attack. We all should be so fortunate!
   Bless you Mom.
 
 
Rob and Gizzy
 

Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 11/19/2013 9:57 AM (GMT -6)   
Hey Rob -- you and I are in the same boat; I had a call from my sister on Sunday stating the care home had asked for us to have the doctor request Hospice for Mom. She has stopped eating and drinking and has become very weak.
 
She too has lived an amazing life; raised four kids and has numerous grandkids and great-grandkids. And her pride and joy is telling people she's never been in the hospital except to have her four kids, lol.
 
We too wait for the inevitable. Good luck Rob, thinking about you and your Mom. And of course, give a hug to Gizzy.

Gizzy'n me
Veteran Member


Date Joined Jun 2013
Total Posts : 1870
   Posted 11/19/2013 2:39 PM (GMT -6)   
Hello Lonie ...........
 
   Gizzy is standing right next to me as I'm writing this ....... he gets lots of hugs from me. He's giving them back too - in a slightly different way, but very close and supportive in his own way.
   I hope you're OK with where your Mom is at in life. Somehow ..... I am very OK with mine. Hope that doesn't sound crude or insensitive. After seeing a steady 3-year decline and being so close to it, I am finding some peace that her confusion and frustration will not be going on forever.
 
Peace and wellness
 
Rob and Gizzy
 

Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 11/19/2013 2:52 PM (GMT -6)   
Hi Rob, I am okay with things -- Mom has been such a great inspiration to me, and was by my side during difficult times. It's the least I can do to be with her. My sisters have been amazing at taking care of her the last couple of years since we moved her to be closer to them. Again, it shows what a wonderful and caring Mom she was to us.
 
Hope you are feeling well -- you've been through so much lately. Just know that you too are an inspiration to me. You've been through so much yourself, and you are so caring for your mother. Hugs, Carol

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 11/22/2013 6:20 PM (GMT -6)   
I am glad it was a nice day! How are you feeling hon? Are you in remission yet? I just went from pills to injections on my chemo. It is best for your mother to attend as many activities she is able - as it will help her not to lose those functions. The injections are working out better for me, as I am not sick as often. Remember you are not alone, and you can talk to me anytime hon. Hugsss
~Moderator - Allergies & Asthma , Alzheimer's~
"The Walking Medical Mystery"/~Medical Caregiver and Doctors Worse Nightmare~/ DX: Lactose Intolerance, Gluten Sensitive, ADD, Fibromyalgia, Carpel Tunnel, Arthritis, Clasterphobia, Anxiety, Diabetes Type II, Grave's Disease, Tachycardia, GERD, PCOS, Migraines, UARS, Anterior Scleritis, Orbital Tumor, Bursitus

Gizzy'n me
Veteran Member


Date Joined Jun 2013
Total Posts : 1870
   Posted 11/23/2013 9:25 AM (GMT -6)   
Hello SS .........
 
   I have gotten an eduation the past 45-days or so regarding cancer. That is .... to an extent, the different forms of cancer, chemos and tendencies for the cancer spreading.
   I started in a couple of support groups and one of them, re-occuring cancer, has been beneficial. It's a small group, mostly women and the types and sequences of taking chemo is so different from what I'm used to the past two years.
   From what I've been lead to believe, remission is a temporary thing - at least for advanced prostate cancer. Mine metastisized about three years ago ... and spread to the kidneys, liver and rib area ...... possibly into or at least toward a lymph node. I do have a catscan in two days.
   My last catscan was 2-months ago, and it showed a slight increase of cancer from 6-months prior. My bonescan 2-months ago showed no increase (thank God) from the last one 22-months ago.
 
   My current chemo - jevtana (injected) has so far been very positive. I have high hopes, but it is too early to declare remission. I was on a prior injected chemo (taxotere) for about 30-weeks in 2012-2013 that worked well up to a point ... then ceased to work anymore.
   The two oral chemos did not work for me - and they actually or technically were more like a hormone therapy. And I have been on Lupron, a hormone therapy, for about three years now.
   My side effects vary. With the current chemo, I can be fine for 4 or 5-days ... then bang .... a side effect gets to me - most often bowel related - although nausea and hot flashes happen too at times.
 
   I am glad to hear that your injections of chemo are working better. I hope that means improvement, as well as, reduced side effects.
 
   With Mom ..... this week I've had three calls from hospice .... three different people calling to introduce themselves and report what's happening. I'll be meeting the Social (Director-type) from hospice next Tuesday with Mom for an interview (sort of).
   I got a call from the Chaplain last night .... and his report was very positive about her attitude. And so life leads us!
 
   Thanks for your post .... hope you're headed for remission!
 
Rob and Giz
    
Initial Dx of PCa in 2003/2004
Radiation (5x5wks) & Brachytherapy (96 seeds) in 2004
Low PSA for 6-years then Casodex briefly
Lupron from 2011 to current
Zytiga 2012 (5-months) - PSA increase
Prednisone & Xgeva from 2012
Taxotere - August 2012 (30-weeks) - PSA from 54+ to 12+
No chemo (8-wks) - PSA to over 23
Xtandi - June to Aug - 2013 - PSA increase
Jevtana + Lexapro - from October 2013

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 11/23/2013 11:52 AM (GMT -6)   
Rob, You are a man with so much wisdom and strength. My thoughts and prayers are with you during this hardship. With my gma, while she was passing, she was down like that, then had an uphill and was fine for a few weeks, then wham really down hill and passed two days into that down hill. In all honesty about the remission, I think it is how a person's body handles the treatment and how effective it is. My love has two kids, his oldest is a cancer survivor. She was terminal, as a kid, a rare aggressive brain cancer. Doctors didn't give much hope for her, and the family even had a family trip through Make A Wish Foundation. My love decided a second medical opinion was a must, and took her to Doernbecker's Children's Hospital (it is apart of Oregon Health and Sciences University, here in Oregon). The new dr had a positive outlook and wanted to try something different. He said in all his patients, they did chemo and surgery to remove it and within five years, it was back. So the DR just did surgery and radiation. She'll be 21 in January and has been in remission over ten years. With the type I have, I more than likely will be off and on chemo for life. I have what is called pseudocancer on my left optical nerve. Also known as eye cancer, specifically Necrotizing Gramultous Inflammation PseudoTumor. Pseudo is fake in meaning aka benign. Unfortunately, benign cancer is still treated as cancer, aka chemotherapy, radiation so on. I don't let it get me down hon. I made it in remission once, last year 3 weeks before Christmas. I was so exicited. I was back in chemo by Feb. I have the rare, aggressive kind of course. I hope you are heading for remission too hon! Remember, you are not alone in this battle. You have to be strong and fight. If you ever want to talk privately, you can shoot me an email :)
~Moderator - Allergies & Asthma , Alzheimer's~
"The Walking Medical Mystery"/~Medical Caregiver and Doctors Worse Nightmare~/ DX: Lactose Intolerance, Gluten Sensitive, ADD, Fibromyalgia, Carpel Tunnel, Arthritis, Clasterphobia, Anxiety, Diabetes Type II, Grave's Disease, Tachycardia, GERD, PCOS, Migraines, UARS, Anterior Scleritis, Orbital Tumor, Bursitus

Gizzy'n me
Veteran Member


Date Joined Jun 2013
Total Posts : 1870
   Posted 11/25/2013 8:41 AM (GMT -6)   
Hello again SS ........... and Carol ............
 
   I'll let you in on a little secret. There have been times when I felt like it would be good to just fade away ... small family mostly detached and loneliness for so many years. This past week-end, Friday and Sunday, the chemo SE's were getting to me or my bowel system in some bad ways.
   And then I think about Gizmo. I do have some plans in the works for his care once I'm gone, but when I see him look up at me .... I don't want to leave him. He sends an attachment to me, thru his eyes, I can't explain. He really does care ... and then some.
   And so do I.
 
   I am very fortunate to not have much pain. In fact, whatever movment of cancer into the bones have been nearly without the pain I've heard assaociated with metastisized cancer into the bone.
   What you have described you have ... I have never heard of before. The thought of anything regarding the optic nerve is frightening to me. I hope it is something that can be kept under control and with relative comfort.  
 
   Well, today it's catscan time ... then a chest xray (that I didn't get last week). Tomorrow, I'll meet jointly with the social person from hospice and my Mother while the social person is more or less evaluating Mom.
   Thanksgiving is only three days away, and I am looking forward to spending a little time out with my youngest daughter and her BF ... out to dinner where we ate last Thanksgiving.
   I hope you both have a wonderful and memorable Thanksgiving.
 
Rob and Gizzy
 

Gizzy'n me
Veteran Member


Date Joined Jun 2013
Total Posts : 1870
   Posted 11/27/2013 9:21 AM (GMT -6)   
Yesterday .........
 
   I met the social worker from hospice and saw Mom at the same time. At first Mom was cranky with me (I was the first to get there) ... then she mellowed out for the social worker when she arrived.
   My Mother looks very much like she did a month or more ago with no visible signs to me of any kind of mini-stroke. But - that's what I heard. There can be large swings of mood.
   And so it was yesterday.
 
 
Hey Carol ........
 
   Anything new with your Mom?
 
Rob and Gizzy
 

Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 11/27/2013 2:57 PM (GMT -6)   
Hi Rob, good to hear things with your Mom settled down when the Social Worker arrived.

Since my Mom is a devout Catholic, my aunt asked that we have a blessing of the sick for her, so it was done yesterday. My aunt said that her eyes were very glazed over, and that she only ate a teaspoon of applesauce at lunch. She stayed in bed. I only hope that my nephews from southern california can make it to see her tomorrow.

How are you today Rob? Sending good and warm thoughts your way. Hugs to you.

Carol

Gizzy'n me
Veteran Member


Date Joined Jun 2013
Total Posts : 1870
   Posted 11/29/2013 9:36 AM (GMT -6)   
Hello Carol and SS .......
 
Happy Thanksgiving!!!!
 
   Last week, three different people called me from the hospice group - a nurse, and chaplain (catholic) and a social worker. I met with the social worker and Mom earlier this week ... and the chaplain said he was well received by mom last week.
 
   My own chemo side effects though have gotten worse. I do have an appointment with my primary doctor today regarding the pneumonia and an appointment with my oncologist Monday to discuss the SE's, get blood tests and the next chemo treatment.
 
   I hope all is well with you both.
 
Rob and Gizzy
 

Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 11/29/2013 3:16 PM (GMT -6)   
Thank you Rob!

I'm sorry to hear that you are not feeling well. Glad that you are getting in to see your doctors. I'm hoping they can give you something to help relieve the side effects. I know it must be rough for you. As you said, your buddy Gizzy is always there with a hug.
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