Year 2 scans

[Shertag]

Well this is my first time posting. I introduced my husband to this site when all the ones he was on were so negative. He has been on me to look to you guys for my own support. So here I go. We’ve been at this for close to two years. In fact we are doing year two scans early. Every scan brings me closer to panic then the last. Luck for us we only have them once a year. Larry was diagnosed with stage 4 August 2 2016. Things have gone as well or better then we hoped. But why do I feel like I’m always waiting for the other shoe to drop?????

[Chiquis]

I'm sorry that you have to join this group, but I'm glad you did. I understand your panic. I think we all go through the same, when is the time to find out results for Scans, MRI, PSA etc... As of right now my husband PSA is <0.1 and I'm very greatful for this. Unfortunately sometimes I feel too that I'm in the waiting. All I know is that thinking this way stops me from enjoying my day and life is too precious to be worrying about "what if"... I pray everything continues to be well for Larry. Enjoy today and take care of yourself. You are not alone.

A hug to you🙏💛

[Shertag]

Thank you and you hit it right. I do forget to enjoy all my daily blessings. Sometimes I even forget to breathe. Maybe joining you guys can remind me to do this. Enjoy your day.

[Shertag]

I watched my husband watch my father communicate with me for the last time Wednesday as he died of his own fight with prostate cancer. We were both devastated. How do I help both of us?????

[Chiquis in reply to Shertag]

I'm very sorry you lost your Father. I know there's no words that I can say to easy your sorrow. I will be praying that God will give you peace to face this difficult time. You are not alone, we care. I send a hug to you🙏💛

[Darryl Partner]

Shertag. Condolences. You are not alone, as you have each other. You have your arms to hold each other, your respect for each other to allow each of you space to process this, alone and hands to hold when you are processing this together. The next few days and weeks will suck. That is how we humans show love and respect to the deceased and how we deal with the fears and sadness of no longer having our loved one in our lives. When my father died from his prostate cancer, I cried, wanting to have one more moment to hug him, to hear his voice, to smell him. A friend told me I would feel scared that he wasn't around anymore. But, fear I did not feel. He prepared me well for life on my own. From your postings, it sounds like your father did the same for you. Don't worry about forgetting to breath, eat, shower or understand. These days will suck and you will go through them and they will get better. Never perfect, but definately better.

[dadeb]

You found the right site here. These are great ppl. Sorry about you dad.💗

[Caring7]

Aloha Shertag

That's a Hawaiian greeting that I love to use because it brings warmth and goodness and welcome and love all in one simple word. And you need that!

So sorry to hear that this prostate cancer is hitting you and your husband from two sides. That is super tough. You might try finding a counselor to talk to? Even if just a few times, maybe some suggestions about ways to cope that will work for you. Sorry for your loss.

As to the feeling -- I think it gets better. For context, we were in your shoes 4+ years ago. The first year was pretty much a blur, staring with "we can only give you palliative care." (They did clarify that did not meet end-of-life care, but still.) Best thing we did was set up a consult with a prostate cancer expert at a research center, in our case, Dr. Eric Small at UCSF. We sent all those damned scans to him, and he came in with a *plan*! It was the first time we felt we had some control over what was going on. He's a glass more than half-full kind of guy, which helps too. He doesn't really treat Joe but he provides great insight, which we share with his Medical Oncologist, who really appreciates the input (as it should be). Insurance covers the consult, although they ask that tests and scans be done locally if at all possible. And not duplicated.

I had that feeling of "what next?" when will the next bad news come? and feeling like I couldn't plan or do anything for worrying that it would be bad timing. I'm still a little cautious planning more than six months in advance, but I'm willing to think about stuff that far out at least. It is generally not a "drop off the cliff" kind of disease, even if advanced. Except for this first cliff.

We threw everything at it the first 18 months or so. Lupron+Casodex+Xgeva combo, then chemo (early chemo is now standard of care for aggressive cancer -- see CHAARTED study and others). We did RA223 (Xofigo) and also Provenge immuntherapy. At about two years Joe went castration resistant --> mCRPC as they label it (metastatic castration resistant prostate cancer). Damn. But he want on Xtandi and he was really good on that for two years. He is active, working part-time (he could work full-time but he'd be really tired), riding a bike 100 miles in a "century ride" twice in the past year -- and he's planning on it for September too! Live as much life as you can! The more you do that, the less you have that feeling (or maybe the less you pay attention to it).

You can try a caregivers support group. Check online for "cancer support group" and your city. I'm not big on support groups, but I have gone, and it's nice to know they're there when things feel particularly bad for one reason or another (sometimes because I'm being treated like crap as part of this process -- see earlier posts on this caregiver site! -- better now). It can be good to at least be reassured that you are not alone, not crazy, and sad as it is, there's maybe someone in a worse place -- which is perspective.

Here are some other things that I've found helpful:

- keep a single notebook and record every doctor visit, including weight, psa, bp, etc. We write out questions before our monthly oncologist appointment (or any appt) and that helps us remember to ask about everything. I take notes during the visit and chime in at the end with anything we missed or questions I have. Write down names of people and numbers and whatever. It's been a great resource for us. When did you get the Pneumovax? What was the reaction you had to Zometa? What's the number for the infusion clinic? It also maybe psychologically helps with that feeling of control -- and you can see progress or stability if it's there.

- do good stuff for yourself. massage. walks. whatever is good for you (and sometimes just you).

- plan to do things together, enjoy life, use humor. Throughout his chemo, my husband and I would bring old "Calvin and Hobbs" and "Far Side" books. It was a great way to get through it!

- Be as up front and honest about it with yourselves and whomever in your life you can. It really does make it easier if people know what's going on. And if they don't get it, it's good to know that down the road. You've been there already, but don't hesitate to tell people who dismiss "prostate cancer" as slow, not a big deal -- "yeah, my husband doesn't have that kind." But whatever -- do what you need to do to be good, happy as possible, healthy.

It's great that you got on this site. I'm also not a big online person (so I fade in and out of this group), but I have found this site really supportive and helpful since I found it (which was unfortunately later int he process than you found it).

Best wishes for you on the scans. For the bone scan, we always go to a local pancake house between the injection and the scan, because Joe loves his pancakes (and I love not cooking them!).

Take care,

Brenda

[Shertag]

Thank you

We are so blessed to have the best care and an awesome doctor. He’s been very proactive instead of saying the words palliative care. At least now they treat this form of prostate cancer.

I do need to get a better handle on taking care of myself. I tend to put myself on the bottom of the list.

I tried a councilor and they wanted to medicate. I did that to get through the anxiety but I’m done with that. It seemed to make my worry worse and I had no energy to do anything. Our hospital has a group for the patient but I haven’t seen anything about the support crew. I will look deeper.

I hope you have fun plans for your summer and things are going well.

Thanks again

Sherry

[catheid]

Hello Shertag. I tried answer this last night. I will try again today. I hate to say I don’t know if there are any definitive answers and as you can see everyone has a different story. Personally I we made big changes in our lives. I am an RN so I make decent wage. I suggested my husband retire and do his proverbial bucket list. On His end we bought a smaller home and he thankfully has the skills he has remodeled it for me. He take trips with me and also with friends in our little rv. We together focus on quality. I look to this forum for info on varied treatments. We go to appointments together and continually request to be educated on treatments currently in use and down the pike. We have approached issues regarding sexuality, side effects, depression ( for both of us). Keep educated, focus on the positive, and find support amongst friends family and blogs such as this. It is not a wonderful journey but one we are being forced to take. My heart aches for you and the pain your are experiencing. I am here to listen. Heidi ❤️

[Shertag in reply to catheid]

Larry always tells me he’s sorry I am forced to go through this. I wouldn’t be anywhere else. After the scans today and the results tomorrow we will be better. Knowing is so much easier then flying by the seat of our pants. The results have been so good so far and I don’t expect any different it’s always just the wait. I am so lucky to be doing this with him and he has been the best patient and so positive. We are so lucky to have sold our business and are able to focus on his life and every minute we have. Some times I just don’t see that. The worry overloads me. Thank you for your kind words and I wish you all the happiness you can find.

Sherry