Caregivers Corner, Treatments for Advanced Disease, Results, Side Effects, etc. (Part 4)

Sorry to hear that you are having more problems. I am so impressed with your stamina and fortitude. You really are a wonderful caregiver who has had so many issues to deal with. I wish you the best and hope your husband can come home from the hospital soon.

Fellow caregivers,
Just one of those days where I needed to look here to see someone who "gets it". Past week has been crazy. Husband had "minor surgery", (for most people, but unfortunately not a diabetic, advanced metastatic cancer patient.) You know how it goes. Everything is more complicated. Took 4 days off work to get him on the road to recovering and he is doing better, but feel like I am loosing my grip. Why now when things are going well? Husband is due for his second lupron shot in 3 weeks, psa has been coming down since the first shot so I should be optimistic but feel like there is a pit in the bottom of my stomach and that I am waiting for the other shoe to drop. Have to be the strong one at home and also at work so very few people who really know what I am feeling. Pretty good at hiding my emotions but actually had to go running for the bathroom today while on my way to see a patient, as all of a sudden I just had a meltdown. Ugh. Hate this.
Thanks for letting me vent. Praying tomorrow will be a better day!!!!

Okay ladies.........this is where we can "vent" and it helps, even though we are crying most of the time that we are writing on this thread....at least that is what I do when I am in that "dark place". It seems like a never ending journey, you get something going good and then another "thing" pops up and then another and another....where will it end? It won't I'm afraid to say, You just get more tolerable and you start to build up a residence to the craziness of the directions that this disease constantly takes you. You are UP for awhile and then sink down in the quagmire and seem lost, but your not, so please continue to strive forward, because you are the "force" that will help that warrior of yours make "breakthrough" advances for the others who will travel this path and make a recovery when a cure is found.

My husband is on the Xofigo/Radium treatment and his latest PSA is 62.4...so we are "kinda winning" a little at a time.....really we are just surviving with this disease....but at least we are going in the right direction. We do know and understand that this treatment will eventually fail and we will just start anew with a new treatment that is in"the works" and survive yet another "dark place" until our Lord decides "that's enough and will take my husband "Home".

Love you all....Peace, Love & Hope
sal

Hi FNP- I know that feeling all so well, and I hope its gotten just a little easier for you today. I assume you are an FNP? I I'm an RN and it sucks knowing what I know and having the ability to do all the detailed research at times.... I know it will come in handy for treatments (already has) but still I think it attributed to my anxieties early on.

We had some worst case scenarios with this mostly unrelated the actual cancer), and more with other problems that may or may not be related to the cancer and chemo....

I had to take time off from work and happy I did, I was barely functioning there for a while when all the tough stuff was going down.

Some of the best advice caregivers on here gave me- get a housekeeper on occasion to deal with the big stuff. I have one now that comes twice a month and can't really afford it but its a godsend and somehow seems to take way more stress off me and frees up more time than I ever thought possible with getting those chores off my list. It truly feels like the job they do somehow adds double the down time that it should if that makes sense! Maybe because now I am not only not scrubbing the toilets and floors, but am not worrying about those chores?

The other bit of advice- don't do it alone. Talk to someone. If you need it, there are always meds to help us relax and even sleep that we can take. I never thought that anti drug me would ever say that benzos were my friend but they helped me through a surreal part of this and I have them on hand for those times where this just seems to swallow me up with angsts and worries.

Sal- How are you doing today? I love the wrap up of your last post. Every time Paul gets a PSA (monthly) I am holding my breath until it gets resulted. Each time its crept lower and lower still, but I know one of these times it will begin to tick up..... And when that happens we are still unsure of all our options due to his other problems he's had.

Thinking of you and hoping you and all the caregivers on here are having a wonderful Sunday.

Cathy,

Thanks for the update. I hope he continues to improve and his heartbeat returns to normal. Paul had massive adhesions and scarring despite never any surgery. Very strange. I joke with him he must have been abducted and experimented on by aliens and hence the memory loss and lack of external scars!!

Paul is holding his own. The cancer is in check now ironically. He is well enough to think about planning for some trips- we want to go to the spring gathering in Louisiana for GFMPH and talking about logistics of doing UK trip or California. Not sure yet but definitely can't do both- one will be enough of a stretch if we tighten up all the belts....

Maybe we should have a ladies only GFMPH gathering at some point? We can call it GFMPSH. S being supporters! :)

How are you holding up yourself Cathy? Are you taking care of yourself as well?

Kukukajoo,

Good news, hubby came home, bad news is his feet and legs have swollen twice the size. He took a lasix water pill which helped, but it seems to be temporary. He will see his primary doctor on Wednesday to remove the staples from the surgery. I'm sure he will look at his legs too.

I'm just treading water here, but happy to make a turkey on Thursday for him and family.

Take care kukukajoo and all.

Have a Happy Thanksgiving!
Enjoylife, Cathy

Thank you for the good and the mixed news!

I know firsthand the lovely effects of prednisone and dexamethasone and also professionally when working as psych nurse saw several cases of steroid induced psychosis... Usually goes away within a few days.... It can be pretty bad... bad enough for admissions into a psych hospital for some. So its not just the angry-ies and shortness...

Paul is in a holding pattern- waiting for his I&D to be scheduled which may require either IV conscious sedation or general given his resistance to anything- they have to use enough to knock out an elephant on narcotics and the caines are nearly useless unless they inject enough to be dangerous and still very little analgesic effects.

I hope that everyone has a very happy Thanksgiving week. We plan to stay home and be quiet and take advantage of a day of togetherness. Not doing turkey, still unsure what we will eat since it will be just him and I.

Cathy- Try to get him to keep his legs raised- above heart level as much as possible while this is going on. Generally this a fairly normal side effect of surgery. Watch for cardiac problems as well. This could be just from the fluid given IV and the effects of surgery. Don't hesitate to call medical team with ANY questions or concerns. I hope it isn't making him too uncomfortable on top of everything else!

So nice to log on tonite and catch up with all the caregivers. Have been spending the last 3 months completely wrapped up in PCa. I feel that our life is revolving around it. Do you guys feel like that? Everything is either before or after diagnosis. But it all came crashing down Sunday when I received a call from my sister in law in Las Vegas that my beloved brother was in the hospital. To make a long story short he had been battling lung cancer and was losing the battle. In a totally selfish moment told my dear husband that I did not want to also worry about him on the trip, called my youngest son and flew to Vegas Sunday night. Thankfully was able to make it in time to see my brother, and tell him goodbye. He passed away 12 hours after we arrived. My son has been a rock for both my sister in law and I in this difficult time and it has been wonderful to have him by my side. Gives me hope for the future to come.. Though I am extremely sad and miss my brother I am glad he is at peace and that he died peacefully with dignity.
Home tomorrow and back to "after diagnosis" but also in time to spend thanksgiving with all of our family.
Hug your children, brothers, sisters, and especially our spouses and be thankful for another holiday together. Thank you all for your support along this journey. You are truly becoming family to me.

Dawn, I'm so sorry to hear of your brothers passing. I was caregiver to my brother and lost him last year to esophageal cancer, my sister in 2009 to lung cancer. Both were huge losses for me. I was fortunate to be with both when they passed. Having your son with you and him being there for you was a gift. You need some time to grieve - try to make sure you have that.
And then back to PCa.
Yes, it seems to take over and life is no longer the same. As Peter was saying life is different but you'll gain perspective on that with time and things will settle down into a post pc diagnosis. A new normal I suppose.
On the chemo front my husband did not like the idea at first but came around, which I am glad he did. You can see his stats below.

Best to you & yours,
Susan

Hello Caregivers one and all.......

Yes, we all live in the "land of PC" and all of it's side effects, up's and downs's, etc. Sometimes there is a "lull" where it seems that you are in a "time capsule" because you and your "warrior" are at a "stand still". That is where we are now. Latest treatment (Xofigo/Radium223) seems to be helping somewhat. Basically with pain levels and mobility, however fatigue is still very, very much present. Mood swings are ongoing due to the HT and the constant reminder of PC. However he has started taking the generic of Cymbalta, hoping that will lessen his depression and moodiness. My husband also has incontinence issues and that complicates his going's and coming's. I bought some condom catheters and thought these might help, but he doesn't really take the time to work with them, so he continues to be plagued with the "wet" issue. He will not try any other method or surgery for this problem, and this creates our traveling to be very limited or very "trying" for both of us when we do travel a long distance.

Didn't think husband (Ted) would be here to celebrate his 70th birthday (Nov 12th), let alone enjoy a snowy Thanksgiving in Gatlinburg, Tennessee with our sons and their families this year. This past August was a worrisome "awakening" for us in how this disease can take hold and totally incapacitate you. The Xofigo/Radium223 was our little "miracle" and has given us a little more "time". We do not know what Ted's "timeline" is, so we do as much as we can to occupy ourselves with positive influences and enjoy family. That was why we all met in Gatlinburg for our Thanksgiving get together this year. Change in scenery and having other activities available for everyone, instead of just sitting around the house, even though Papa couldn't "go and do", he wanted them to continue "living". "Sitting around" was what we did on Thanksgiving Day, watching it snow and continually going back into the kitchen for seconds and thirds. I had cooked and froze all of the casseroles, deserts and other day's meals ahead of time, so no one had to bring anything except their desired beverages. Turkey was cooked Thanksgiving Day, so the aroma would help us acknowledge that it was Thanksgiving. I bring my griddle for cooking morning breakfasts, that way we begin the day as a family unit and end the day with a family meal as well.

I am so sorry to hear of family members being taken "home", leaving a void within our hearts, hoping that emptiness can be filled with warm and loving memories of that loved one and know they are no longer suffering. This time of year can be such a time of turmoil due to illnesses and inconsistent days. Ted, has days when he doesn't talk much and I understand and try to not "get in the way", because it's "okay" to have those "down times", that's normal. I am praying that our son's will be a great support for myself and Ted when the time comes and the need is there. I believe that they have overcome the "denial" and understand what is to come. I will take each day and count it a blessing that Ted can continue to be mobile, even with all of the fatigue and incontinence issues, he can still smile and it melts my heart. Who know's what lies in store for us. When the "time" comes, I will not let him lose his dignity because I respect him, and want his quality of life to be considered more than quantity.

I appreciate all of your notes and inquiries and hope all of you had the "bestest" possible Thanksgiving given all of our situations......

Peace, Love and Hope to All....

Sal

PreacherMan12....check my thread that I began when Ted (husband) started on the Radium223/Xofigo. Named: Starting Xofigo/Radium on 09/25/2014.......very few side effects.......we go tomorrow (Thursday for his 4th injection.

sal

Susan,

Glad to hear you are on the mend...must be tough when both of you are feeling unwell.

Happy New Year to you and yours! I hope all our new years will be uneventful...

Lisa