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Posted 11/1/2013 4:40 AM (GMT 0)
Emotional reading everyone's journey, those still fighting and those of us grieving for our loss of our love one. This trip back to Vegas has been very depressing for me. Sure I go visit a friend, I go to a movie and even seen Kelly Clarkson's Christmas TV special at a hotel, she was just great andI so enjoyed the Christmas decorations and songs . It will be aired Dec. 11th on NBC. But then I go back home and the memories just haunt me. Took grandkids trick or treating tonight, they had so much fun we even had a great hay ride, all I could think of was Jim dressing up with all of his grandkids together last year here in Vegas, as sick as he was he never let the grandkids down. Have been seeing a counselor, helping some but I feel that all the fun things I do just postpone the process. Starting to dread the next next few months and the firsts they will bring and question if its even worth going through them.????

Sally, sounds like Ted's oncologist need to explain how the pain meds work and that taking them will never make any person with cancer pain an addict. Addicts are people that take pain meds to get HIGH not calm their pain. The patches worked well for my Jim, we did need to up the amount to 50mg then 75mg his last few weeks and he was also on dilauded (spelling?) three times a day along with the patches. Compazine did nothing, zofran a little but the sancuso nausea patches worked GREAT for his nausea. I think we as caregivers manage to figure out our mans needs much better than the doctor, and I have to say I kept a log of Jim's medication, times and dosages, and as long as I brought it with us to each visit and the doctor spoke with Jim to make sure what I was giving him was working or in some cases not working he never questioned any over medication at any time.

I know we all need to go through these hard last days weeks months and if your lucky maybe a year is added, but I still thought I was prepared for the end to be easy to accept....never did I dream I would be in the deep dark place I feel today.
I feel like if I can't still be caring for Jim my life just doesn't exist. We married when I was 18, all I knew was be his wife, a mother and a caregiver for so many people I've loved in our lives, and they are all gone...
Will be looking for a support group here on Vegas tomorrow.Hopefully they can help me.
LuAn
Posted 11/1/2013 1:21 PM (GMT 0)
LuAn, just want to send hugs. You've had more losses than your body can handle. Something to consider is that we are at the very beginning of this journey, as painful as our other journey was; we were on it for awhile and Jim and Mike. Now we are both hitting way to many firsts too soon, even if they are the "fun" things. By the way here in Ohio it was a very wet Halloween day. The kids enjoyed themselves - all the cuzes were there except Asia. WET!

Besides all the firsts so soon, you've had too many losses and changes. It really hit me when I came home from Hawaii. Mine's been rough for simple things. Folding and organizing his clothes, shoes, etc. I generally don't "allow" me to cry; but I've certainly have made up for up. Surprised me. Anyway I get and hang on. Had more to say, but ....
Posted 11/5/2013 6:00 AM (GMT 0)
Seem to be having several good days in a row lately, kind of nice. Went to primary doctor for general check up, like to keep a primary in LV and in CT since I travel between both. My blood work came back really good, I was very excited. He referred me for a CT scan of my heart for a calcium score. If anyone here has heart disease in your family history and yourself having high blood Presser and on statins it's an important test that insurance won't pay for and it cost $150 on your own. I truly believe 5 yrs ago it saved Jim life! his score was so high and the results predicted a 90% chance of him having a major cardiac event within 5 yrs...and he did within 1 year his heart stopped I pounded him back to like and finding 3 months later he needed triple bypass surgery. My score 5 years ago was low enough to start statins and increase my blood pressure meds. Now today after losing 130lbs, lowering my cholestrial from 400 to 160, lowering blood pressure meds from 4 different kinds to 2 different kinds I was excited to have the ct scan again and knew I would pass with flying colors.....NOT SO..I am now at a moderate high risk for a major cardiac event and need a chemical stress test, they won't even let me walk it. If I fail an angiogram for blockage will be ordered. I am just in shock.doctor says now dealing with the genetic part of my health issues.
He added high dosage of stains right away, 1000mg fish oil 2000mg if I can handle it and I go tomorrow to schedule stress test and see cardiologist on the 20th to go over all the results...sooner IF I fail stress test. I am just in shock, I guess. I was just dreaming that losing weight was the answer to all my health issues. I do eat differently too, but not enough I guess. Prayers that this all works out for me on a way that I end up being as healthy as I can be after whatever needs to be done.
Posted 11/5/2013 10:18 PM (GMT 0)
Jitters,

Seems to be a pattern lately.. Passages had some problems after her husband passed and now you. Know that I am sending prayers and hugs your way.

To everyone, hope you all are doing okay. I think about you often.

Going in to the Oncologist for his monthly check up. PSA will be noted so I am hoping the Xtandi is still working.

Cathy
Posted 11/5/2013 10:25 PM (GMT 0)
LuAn,

Doctors can be sooo ungrateful sometimes. You lose a bunch of weight for them, get yourself in what you think is good shape so you deserve a good checkup for a change and do they give you one?... Nooooo.

I take a product called Mega-EFA that is basically souped-up fish oil in a slightly-thicker than usual, mildly strawberry-scented gel capsule. It is pretty tolerable at the dosage you doc is talking about. No fish burps.

Stay well for us.
Posted 11/5/2013 11:59 PM (GMT 0)
LuAn, you and Jane had so much stress added to your own health issues while caring for your husband in the last days. Take some deep breaths and get through the tests. It's easy to say, not so easy to do! I will keep you in my prayers too and hope that your heart can be managed without major surgery. Sometimes the strong ladies have a hard time letting others take care of us. Hope you have family and friends close by who can hold your hand through this and be there with a lot if hugs. Congratulations on the weight loss and other changes you have made to stay as healthy as possible.

Sal, so true that we have to be pro active for our guys. We can be their best advocate. Sometimes what should be easy, like Rx refills, get stuck in the office pipeline and we have to follow up. I want the doc's team to be 100 percent on top of everything and have to remind myself that they are human too.

Cathy, you asked about Mark's stroke in August. He was on xtandi at the time, but had also had brain radiation in January for some metastatic lesions. The area of the stroke was very close to the area of his brain that had heaviest rad. He was not on any heart meds and his BP had been good through all of this. No way to know if the xtandi contributed to it.

I hope we all hear some positive words from the docs and a little reprieve from the worrying as we edge closer to the holiday season.
Marks oncol appt was postponed until next week, so only did bloodwork and xgeva today. He had a yearly appt with his urologist and will see mark only if he needs intervention to keep the flow going.

Pat
Posted 11/6/2013 5:43 AM (GMT 0)
Hello all....Been on the thread with Gizzy'n me (Rob) since husband on Jevtana....he's been so extremely helpful, with letting me know what I can expect. Ted had a bad day yesterday (Monday) after having such a good one on Sunday...thought that he was "out of the woods"...but Monday, he was nauseous and slept most of the day....didn't give him the zofran.....but started it back that afternoon and today (Tuesday) he was "kinda" back up to himself. Didn't want him to do much since he wasn't feeling all that well the prior day.....a little at a time. Fixed him an "extra large" breakfast, because he didn't eat much the day before. He said his "taster" isn't working well...the nurses said to get some lemon drops they help. I did.....and he's been chewing on them....I think those Fentanyl patches are helping, at least it is keeping him from "hurting" so much....it's "shooting" pain medication systematically and consistently. which I think is helpful.....

Had the Jevtana on Wednesday and got back home at around 3:30 that afternoon and he was "down for the count" until Sunday. Slept most of those three days, which I don't mind, that is his body trying to adjust to the medication that's in his body....

Sold a couple of BR sets and retro kitchen bar stools yesterday, trying to "re-size" our personal property, since the house we bought is half the size than what we have now. Even sold my car a couple of weeks ago, no need for so many vehicles, now, still would like to replace the truck with a newer one instead of the "clunker" that we had. I try to pack a box or two a day, just to get a head start (hoping that the house will sell soon), and looking at the "stuff" and remembering who, what, where and when...it either brings a smile to my face or a tear in my eye....I can't imagine how hard this is on Jitters99 (LuAn), Passages (Jane) and nhwife (Susan) and all of the others out there who are trying to survive without that "guy".....

I've got eleven days of Xtandi...if anyone needs them...I will get them to you somehow....hate to have them wait away....

Haven't heard anything form littlenm (Nancy)lately....how are you doin'...saw a thread on Gleason Crew 9...back the first of October.....

Will have you all in my thoughts and prayers as I try to close my eyes to sleep tonight.....
Posted 11/6/2013 11:24 AM (GMT 0)
I haven't posted lately but have been reading. I haven't thought I had anything of value to contribute actually. But I do feel like I have turned a corner. I'm not sure what it means. I don't feel as numb as I did but I am waiting for whatever to show up!
I am doing a lot of fall chores. Some are easy because I always did them like cutting back the peonies. Others like pulling in the outdoor hose and turning off the outside faucet are hard because Ed did those.
I am moving stuff around in the house, mostly to establish new routines and ways of doing stuff.
Work is great with small victories like getting a new position and extra hours for my staff.
I am reading A Widow's Story by Joyce Carol Oates. She lost her husband suddenly so that is different but her feelings are similar to mine. It helps so much to know I am not alone in what I am feeling.
I am reaching out to other widows in the area and some of us are meeting and going out to a concert in a week or so.
I do have my moments and I expect them to be tough in the weeks to come. But I chose this moment to update because I am in a good moment right now.
I join Pat (Dreamer) in her hope:
I hope we all hear some positive words from the docs and a little reprieve from the worrying as we edge closer to the holiday season.
And that goes for the ladies too!
Posted 11/6/2013 3:25 PM (GMT 0)
Hello all. I apologize for not commenting over the last while. I have been reading but just could not get myself to reply. I can't really explain why.

Reading your updates, I feel completely ill-equipped to offer guidance. Although we are sadly on the same path as so many of you, we are really only at the check-in counter. The thought of this trip scares the heck out of me and posting replies seemed to make me feel that I was already on the trip. I don't know if that makes sense to anyone but it is the best way that I can put it. I decided to take a bit of a break and try to keep myself in the present and not look to the future for a little while. My husband is essentially asymptomatic right now other than some leg pain that they feel is a side effect of the Lupron as it is on the opposite side as his bone mets.

PSA has been climbing quite quickly. The euphoria of the descending results has been replaced with fear and dread. We get another test in 2 weeks and I am sure it will dictate adding Casodex. The most recent CT scan report stated that there were multiple new mets throughout his spine and new mets in his liver.. Our doc never mentioned these but the clinic in Phoenix that we went to JUST to get bloodwork done did. Sent me for a loop I will tell you. We love our doc back home and I couldn't figure this out.

My husband had decided to keep his condition secret from everyone....Pca is all that they know. I had to break the silence and get my radiologist brother to look at the pictures. He (and another colleague) are not so sure that there is anything on the liver and maybe only one or 2 small additional mets on the spine. Overall a good report not the dismal one the family doctor down here made it sound like.

My husband is an extreme worrier so I can see now why our doc decided to not mention too much. Treatment decisions will really only depend on the PSA levels at this point. Scan again in a few months might show more progression but we will cross that bridge when we get there

Right now trying to be positive.....especially for him. He gets thinkng that he is not going to live past Christmas which I reassure him is bunk. Having had only 2 PSA tests come back lower than before, a nadir or 1.2 and PSA apparently doubling about every 5 weeks, I fear progression is imminent. (Signature doesn't seem to update. OCtober PSA 4.2)

For the moment we are going to try to revel in the symptom free world that we live in and enjoy every moment.

Forgive me in advance for infrequent posts and I have to keep my positive spirits up. I am the only thing that keeps him up and doing that takes all my strength. I cannot allow myself to start the "trip" too soon

My heart goes out to all of you and I once again thank you all for your posts that have shown me strength, and guidance on how to deal with horrible disease.

Nancy
Posted 11/8/2013 10:57 PM (GMT 0)
Just checking in and wanting to wish everyone a happy weekend. All is about the same here. Husband just joined a gym and went for the first time yesterday. It about did him in even though he went slowly. He slept in this am and went to bed early last night. He keeps busy and doesn't complain. We are blessed.
Am thinking more and more about each of you and the things you are going through. Life is full of unexpected twists and turns and it is so evident when you read what is going on here.
Wishing everyone a great weekend and also a HAPPY VETERANS DAY to all our wonderful veterans!
Posted 11/11/2013 11:35 PM (GMT 0)
Hi all,

Good news at the last Oncology appointment last Friday. PSA holding steady at 15 on 4 months of Xtandi. Hope it keeps up.

Dreamer (Pat) Re: Mark’s stroke, thanks for letting me know. I wonder at times if mine is close to having one. He has to take warfarin for blood clotting then he has trouble bleeding. Always something. Seems like we are on similar paths. Did he have headaches?

Nice to hear from all of you, keeps me going to say the least!
Posted 11/13/2013 12:36 AM (GMT 0)
enjoylife, Cathy, no headaches, no warning, if fact the morning he got up and was walking crooked, it seemed more like bone pain and muscle spasms after Xgeva shots. Next day, his stroke symptoms were more significant (droopy mouth, weak arms), that we thought it was more than typical SE's. Good news for you. Xtandi is a great drug.

Nancy, Littlenm, Many of us have taken time away from HW, sometimes PC can be overwhelming. You have so much to hope for, and it's so early in your husband's journey. His PSA is relatively low and he has only touched a few of the drugs available and he is feeling well. GL 9 is a tough diagnosis, and already had mets. Now he is doing the HT and maybe have to move on to other therapies. The newer drugs, Zytiga or Xtandi can do almost miraculous remissions on the PSA and scans but mostly soft tissue. The heavy duty infusion chemos are out there too, although much harder on the body. And if his bones seem to be the site for most of his mets, there are new injectable radiation treatments, Xofiga being one. I'm not writing with any medical background, just years of walking this journey with Mark.

Today's update--PSA 606, his platelets are in danger territory, 880. Stopped Zytiga about 2 weeks ago because he was having extreme bone pain, not helped by meds and low grade fever in the evening. He had almost a full bottle of Xtandi left over, and was feeling so desperate that he restarted the Xtandi (without consulting oncol!!!). It did help with bone pain and fever. Today his oncol agreed to giving at least one more month with Xtandi (rechallenge I think is the term) and see if the psa responds. More encouraging, however, is the next step with Xofiga, if his CT scans show no mets in lungs, bladder, liver, etc. CT scan on Friday and consult with Rad oncol later that afternoon. We should know by weekend if Xofiga is OK'd. I've read where he should not be on other chemo, so don't know if the radiation oncol will want him to stop the xtandi. I'll check rest of HW-PC to see if any threads on Xofiga and Xtandi. Mark's not too concerned about the serious SE's of either or both combined, since his time without the drugs could be very short.

Next week I have sonogram scheduled after questionable mammogram. I'm thinking 75% not because it's both boobs, I've had years of cystic breasts, and I have Aflac cancer insurance. Thinking the Aflac is my ace in the hole, and hope I'll never get dollar $1 from them!.

Pat

Post Edited (Dreamer44) : 11/12/2013 6:40:09 PM (GMT-7)

Posted 11/14/2013 5:32 AM (GMT 0)
Hello all.....am posting mostly on the "Journey with Jevtana" thread. So generally you can find my posts there since husband started this treatment on the 30th of October. Here is what I posted on 10/31/13 for the 10/30/13 treatment:
WBC: (range 4.0 -11.0) 5.8
RBC (range 4.2 - 5.6) 4.23
HGB (range 13.7 -17.0) 13.0
HCT (range 40 - 50) 37.6
Plattelets (range 150 -400) 231
GRAN (range 1.6 - 8.5) 3.70
PSA (range: WHO CARES) 60.06

Benadryl: antihistamine (dexchlorpheniramine 5 mg, or diphenhydramine 25mg or equivalent antihistamine),
Decadron & Aloxi: zcorticosteroid (dexamethasone 8 mg or equivalent steroid),
H2 antagonist (ranitidine 50 mg or equivalent H2 antagonist).
Jevtana (forgot to check the bag for dosage - will call to see what it was)

Vitals after were: BP: 115/84 and Temperature 97.8

Saw doctor prior to infusion & was advised that the bone scan had "moderate growth". Stopped Xtandi and will start this date on the Jevtana.
Asked several questions:
How many sessions: 4 one every three weeks
Do we continue the HT (Trelstar every 84 days) & monthly Xgeva injections: yes
What's next: Advised if PSA goes down, maintenance (lower dosage monthly - shucks!) or possibly Zytiga. Asked about "a rest" from everything......doctor didn't respond.
Ted has not been able to get a good night's sleep in several weeks, shoulder and back pain. Lortab helps for a short time, but the Aleve helps longer. Advised PA prior to doctor coming in, she said that is not good (on kidneys). Suggested the fentanyl patch (25mcg). Doctor agreed. Ted thinks that he is going to become a "drug addict"..........wouldn't take the patch, but when 11 o'clock came around and he still couldn't sleep, we got the box and the instructions out to use. He still did not sleep well, neck and back hurt. Felt like he had a crick in his neck, couldn't lay his neck in any particular spot, comfortably. Gave him a lortab and eventually his back eased but neck never stopped hurting. He slept about one two hour time.
Next day (today (Thursday), he ate breakfast, frozen waffle (what he wanted), 4 strips of bacon, fruit bowl (cantaloupe, watermelon, honey dew & kiwi), orange juice & coffee. He was up at 5.....
Lunch: Not much of an appetite, but ate a deviled ham sandwich with a piece of Hawaiian cake I made for his desert. Supper: can of Campbell's New Home Made Chicken Noodle soup. Ted was tired but since he had pain was not able to rest....feel asleep in recliner, woke him up at 8 and put him to bed with a lortab. Will see how he is tomorrow (Friday)

I plan on adding a Zofran pill to his morning and afternoon/night pills, will do this for about three days after. I did this when he was on taxotere and he was never nauseous. Doctor says I over-medicate....husband never got sick before, so I will continue to do this process.

I was concerned and a little upset about the prescriptions: I knew from that last time, we needed Zofran (8mg), Compazine(10mg) and Prednisone(5mg), however, no one from the doctor's office called these in prior to our scheduled therapy visit. So I started calling a few days ahead of our scheduled visit, and leaving messages about the need for these scripts.....well, never got the Prednisone or the Companzine in advance (had some left from previous treatment (just in case). Now really, who wants to go to the drug store after spending four hours getting chemotherapy? Unless you are a glutton for punishment, no one that cols have this accomplished beforehand, so this was my point. (We have to be pro-active as caregivers).

Current info: Had about 7 to 8 days of "down" time" (slept most of those days, a little nausea, constipation, unusual taste in mouth, swelling has started back in the arms (wrists) and ankles, back on the Lasik, fentanyl patch, I think is helping. By the 9th, he was almost his "ole self again. Had 69th birthday on the 12th, we were in the car headed home, so no celebration. Maybe later. Trying to get this house sold and move on.....

Good to see everyone's posting. Even if you don't want to, it's good to know how you are and how you are doing.......either, good, or bad or indifferent.....we all want to know "where" you all are!
Posted 11/18/2013 6:15 PM (GMT 0)
Dreamer (Pat) Mark has been through so much. I appreciate you filling me in. Wrote on the other thread too.

Tednsal (Sally) Many things going on right now for you. Between you and Gizzy I get information on Jevtana. When Xtandi stops working, Jevtana has been already suggested by the Oncologist.

Smo1, littlenm, and all of you, please keep posting when you get a moment. It’s nice to keep in touch and read the updates.

Cathy
Posted 11/19/2013 1:24 AM (GMT 0)
Enjoylife, Cathy,

Oncas who started the xtandi/xofigo thread talked about docs sometimes stopping Xtandi too soon. Your hubby is a newbie on Xtandi, and it did kick his PSA a little bit. We have a copy of Mark's scan from Friday, we are not medical professionals and have limited understanding of what it really says. However, his PSA doubles almost monthly and the Zytiga did not improve his symptoms at all. In just the short time he has been back on Xtandi, he is more comfortable although sleeping more. His scans show smaller lymph areas and scarring but no active mets in his lungs. His bladder continues to work well and no blockage into the kidneys again. Except for the PSA, Xtandi is keeping him as well as he can be.

Good to see Tednsal and Gizzynme posting about the Jevtana for those who will be headed there in the future.

Hope the Xtandi continues to work for you and SE are minimal.

Pat
Posted 11/20/2013 2:55 PM (GMT 0)
If some of you have a minute, you might pop over to this thread: www.healingwell.com/community/default.aspx?f=35&m=2912963&g=2913093#m2913093. It's a new member who is frantic to find ways to help her dad who has recently been diagnosed with widely metastatic Gleason 9 cancer at the young age of 48.
Posted 11/25/2013 7:07 PM (GMT 0)
I just wanted to wish everyone Hug a wonderful Happy Thanksgiving!
Posted 11/29/2013 7:40 AM (GMT 0)
Am hoping everyone has had a wonderful Thanksgiving. Know this was a very hard day for many of you and I must say I am so sorry for your pain.
I tried posting last week, but my attempt failed. Sometimes that happens!
My husband was to his oncologist last Friday. His numbers were good, .21. He got his Lupron shot and his 14th month supply of Xtandi arrived. So we are good for another month.
Just wanted to check in and also try to keep this thread running.
Thoughts and prayers are with everyone!
Posted 11/29/2013 7:58 PM (GMT 0)
Hi all! hope everyone's Thanksgiving was blessed. I am back in CT after spending 2 months,not long enough, in Las Vegas. Our entire family was together for our first big holiday without Jim. I kept busy cooking for 2 days so I survived, but today! not so good. Everything is cleaned up, the kids and grandkids all went shopping and I just couldn't bring my self to go! Easier to stay home and clean,and cry, what I did when Jim was so sick at the end. I went to my grandson's last football game, it was so great to see him play again, Jim would be so proud of him, the only freshman on the varsity football team, also plays JV when they need him. We had pouring rain, hail,wind, then small amount of snow for the last quarter. Varsity won their first championship and my grandson had a huge part in the victory. I know Jim could hear them announcing his name on the loud speaker for all his great tackles and even greater receiving, again me crying.
Every Thanksgiving here in CT we add additional friends for dinner and our circle of hand holding and what we are thankful for grows. It was very hard for the grandkids. My grandson noticed me cleaning and crying today! He gave me the BEST HUG and I love you and I am so sorry this is so hard for you, then he brought me a clay vase he made me in school with his name and football number engraved on the bottom, he is so thoughtful.
I am so torn about putting up Christmas decorations, I just don't think I have the desire or the energy.
Sorry for being so depressed, I pray that most of you are not having the sad days. LuAn
Posted 11/30/2013 2:22 AM (GMT 0)
smo1, nice post, thanks for touching base and the update. Hope yours was a good one.

Jitters, (LuAn) I had tears when I read your post. I can only imagine how hard it must be for you, especially during the holidays. They make it doubly difficult. I pray for your strength and the continued support of love through your family and your grandchildren. What a nice grandson!

{Hugs to all}
Cathy
Posted 11/30/2013 5:15 AM (GMT 0)
Hello all....yes the holidays are a hard time for a lot of people, not just because of "lost" loved ones, but there are other circumstances that make it hard to face. This is one of our first Thanksgiving's that we did not have family around, but Ted had a chemotherapy session this past Thursday (10/21/13)and it has been taking him about 7 to 8 days to shake of that "funk"...so we opted to tell everyone beforehand to not plan anything with us this holiday, maybe we will be okay for Christmas. So they all planned other options, which was wise....although Ted did eat a Thanksgiving turkey dinner, even though it was "smaller" in comparison than what is usually set on the table, we were able to enjoy it quietly, just the two of us.

I continue to post on the thread "My Journey with Jevtana"...giving the SE and the RBC,WBC & Platelet counts.....along with Gizzy'n Me

smo1...good numbers, so enjoy it while you can...shake of the cloud hanging over your heads and "dream on".....
jitters99(LuAn), you don't have to decorate...maybe just a small pre-lite tree. This will be a hard season to get through...we are with you, if not physically in spirit.....and so is Jim.....
enjoylife (Cathy)...continued well wishes on PSA holding "steady"....as I said to smo1...."dream on".....
Dreamer44 (Pat) I have a 12 days of Xtandi left, I can mail these to you....e-mail me if you are interested....good luck to you and Mark.

Don't see nhwife (Susan) or Passages (Jane) posting anymore...I can understand why but hope you both are surviving the holiday season.

Ted and I watched a Garth Brooks special tonight and he sang a song with a particular verse that made my husband tear up, to the point where he couldn't speak the words from the song, so I had him write them down.....they were: "If she had to face tomorrow without me, did I give her enough love to last"? Let's hope that we do give enough to last and last and last.......

Goodnight all....
Posted 11/30/2013 10:31 AM (GMT 0)
I did get through Thanksgiving, not without a lot of tears. I actually really melted down Wednesday night. Thanksgiving with family was good. My brother paid homage to Ed in the grace he offered - so we were all emotional. But I wanted him remembered and he was.
Late we played the Dictionary game with lots of laughter and silliness. We all remembered two years ago when Ed was partnered with my uncle who didn't have a clue as to how the game was played and the two of them had a grand time. They reminded us of the two old codgers on Sesame Street!
It is a new life for me and one that is distancing more and more from prostate cancer. That used to be such a focus, reading and researching all the time. I do visit this forum - I do care about all of you still on that journey.
But my journey is really different from yours now. I will check in once in a while - but even that may get less frequent.
I wish you all well - this crap must be beat.
Posted 11/30/2013 4:13 PM (GMT 0)
I hope everyone is having a good holiday weekend. It is interesting. In all the years I have been with my sweetheart, he has never celebrated this particular holiday. For his own reasons, and I have respected that. Since his illness has gotten worse over the last year, we have seemed to reach a similar place, without discussing it. We are embracing each celebration in a different way. It is bittersweet, but seems to include the recognition that our time is limited, and honoring celebrations for what they are.

So yesterday, I brought home leftovers from my relatives celebration, and we enjoyed the repast, until we were both stuffed. He is dealing with a lot of pain, which for some reason the doctors only now are speaking about some internal morphine pump. Apparently this can help with the intractable constipation he is enduring. It also appears to add a continuous dose, which should help the pain. It appears to have some major draw backs. They are also speaking about radiation again for mets in the hip area, as well as surgery. Last but not least is starting him on Zytiga. We shall see what the future holds!

Susan

Posted Yesterday 10:05 PM (GMT 0)
nh wife, your posts always brought PC to the personal level, how you and hubby were coping with the end stages. I can understand you moving away from PC, as you said, a different journey for you now. I would bet there is a forum or blog for recent cancer widows or widowers or families.
Radsgirl, you have created a new tradition for both of you. It's about the QOL and the quality of the time we spend with our partners, not what we are doing together. Sorry to hear about his pain levels. Would he be a candidate for Xofigo which targets the bone mets? It's supposed to reduce the pain as well as the number of new mets. The constipation can be hard to manage, when nothing seems to easily resolve it. We have RX and OTC drugs but the miralax seems to be more effective than the RX.

Sal, I am following your jevtana thread. Hope the results continue to be positive.

Paty
Posted Today 8:56 PM (GMT 0)
I am at loss today. One of the women on another support group lost her husband last night. She indicated that he died, not so much from the PCa, but to the ongoing toll of chemo, and a very bad reaction to Xofigo. Timing is everything. I had thought about mentioning Xofigo to my partner's doctor today. I can't stop crying, but do not share much of what I write or other information to my partner, as he finds it uncomfortable to hear. Thus, I am sitting in here, grieving for her, and worrying about my guy, and what the future may hold. I do not usually go down this pike, but this has rocked me. Just needed to vent.

Susan
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