Carmen shares a caregiver's perspective on supporting her husband through metastatic prostate cancer, emphasizing the importance of finding a compassionate medical team, prioritizing emotional well-being, and facing each day one step at a time. She encourages patients and caregivers to communicate openly, lean on their support system, and approach the journey together with hope and resilience.
My name is Carmen. I'm from Spain and I'm married to a wonderful person, his name is Jim. And our story began on October 8th, 2018 when my husband was diagnosed with stage four prostate cancer. It was a big shock, obviously. But, my husband reacted very well. I think I was the one who took it harder. It took me a long time to accept it. But through time we have overcome that and we're dealing with it pretty well.
When my husband was diagnosed, we lived in Alabama and we were referred to Tulane to Dr. Sartor's office and that was I think one of the highlights of our journey because we are very, very happy with the care we're getting and we have the wonderful opportunity to meet our dear Dr. Barata.
This is my husband's situation. On 2018 he was diagnosed. He was on treatment for two years. He did very well with barely no side effects of the medicine of the treatment. He received radiation and his PSA was undetectable and since he was doing very well, Dr. Barata proposed to us that perhaps he could get off the medication to see if he was cured even though the chances were slim, but we still thought that there was a chance. So my husband did it. He was being monitored every three months and for about a year the PSA was undetectable or very low. But at around April it started to rise, April this year, and they did PET scan and they discovered there was another lesion on his L3 vertebra.
After that it has been a little bit stressful because Tulane recommending a certain type of radiation, but the insurance denied it and because we elected for him to be radiated in Spanish Fort Alabama it happened that he could not receive that type of radiation so he received what they call all staff. It's another type of radiation. At this moment his PSA has not changed. It's still high so we don't know what the next step is going to be till we see Dr. Sartor. The good thing is that my husband feels good. He's in no pain so far and we're just waiting to see what the next step is going to be. I think that is the physical part, but when you enter into this world of cancer, there is a very important part to also address and that is the emotional part of it. They say every patient is unique and every cancer is unique and I like that approach because every person has a very different way to understand and to approach this.
When we first were diagnosed, because I think we are all in this, like I said, my husband accept it very well. He took responsibility and I think that's the first step to accept your reality. For me, it was very hard because I enter into this mood of fear of losing him and also what that implied and that implied how my son, for example, that is really close to his dad, how is my son going to be without dad? To me, that was very difficult and it took us three months to let him know that dad had been diagnosed with cancer.
But slowly we became to really face the situation face to face and we did that because we started to deal with our emotions. We started not to put them aside. If we felt that we were afraid, we recognized it. If we felt that there was a lot of uncertainty, we say, yes, there's a lot of uncertainty. And I think that is another step to help you deal with this fight a lot better, to accept everything that comes with it. I've been very lucky because I think unconsciously my mother sort of opened me to this world of understanding emotions, even though I was not aware of it till cancer came to our lives. And also I have my daughter who is a nurse so she really help us understand that even though it was metastatic, but it didn't mean that this was the end of everything.
So it was something that we have to face step by step and that was it. Not to think about the future, what is going to happen, what is that? No. She taught us how to say, "Okay, with what we have, how are we going to approach it and what can we do with it?" And that is another tool that it was very effective. Of course, also I find very important to find the right medical team. When I say the right medical team, I'm not saying that of course I want doctors that are really good at what they're at, but not because of the medicine that they can or the treatments that they can give my husband, but how they approach that relationship between patient and doctor. To me, that is very crucial.
We passed or we went from our first oncologist said the first thing that he said to us was, "Well, it's going to be a miracle to cure you." To me, that destroyed my visit. So we went from that to talking to Dr. Barata where he sat down with us, he listened to us, to how we were feeling, to what our fears were. And then he exposed to us what the reality was. He did not hide anything, but he gave us comfort, that comfort that you need in order to say, "Well, you know what? This is not easy. This is a situation. This is a fight that a battle that we have to fight, but it doesn't mean that we are alone, that we have the best medical care possible and the best team." And also when I say the word team, I truly believe that it's the doctors, the patient, the caretaker, and the support of it. We all have to be a team.
For me, the mental health is as important as the treatment pills or radiation or chemotherapy, whichever other treatment that patients get because if you feel good emotionally, then that treatment and everything that goes around that fight against the cancer, you will be able to undertake that in a much better way. And I think the results will be better, much better. So the mental health is as important as the treatment and it's something that we all as a society really need to be very good advocates for that. It has to be something that we as a society have to put on our plates and say, "This is a reality that we have. We have to really spend a lot of effort and research on making this as important as all these other therapies because they go together." That's the way I look at it.
It's not only for the patient, but for everybody around him, because we have the team with the doctors, but at home, the support is very, very crucial as well. And this impacts everybody in the family because you have to start making some other different decisions and your life is going to change. Somehow, some shape, it's going to change, for sure. So now if we know it's going to change, what we need to think is that we should make it as positive and make it work for us in the best possible way. And for that to happen, you have to really feel good mentally. It's very important, very important.
If we are caretakers, we have to be emotionally strong and emotionally stable and very much because if we are not, that patient is going to suffer even more because then the guilty feelings that I'm putting on that person so we just do not want to go into that as we can. So this is a fight that my husband is fighting, I am fighting and my kids as well. So we're just trying to be a team and it's very important to be a team. But, like I said, that team has to be very stable emotionally. For me, the beauty of this being stable emotionally is that it really helps you get to know yourself. It helps you to get to know your limits and when you know what your limits are, when you know who you are, you really have two important tools to face whatever the challenge is.
Another thing I find very important is you need to ... Of course, it's inevitable to think about the future, what's going to happen. That's inevitable. But if we all could come to teach ourselves how to say, "Okay, one day at a time," I think that helps things. It puts things in another perspective. It helps you put things in a very different perspective because at the end, how much control do I have over the future? Not much. Really, what I do ... I have to control what I can control with, but I don't really know what's going to happen to me, even if I'm healthy. I don't know. So we have learned in my family how to really live like that. It's a process, but I don't think it's impossible.
Another thing I would like to say is that when you think about the word cancer, it is so terrifying. It can be terrifying and you immediately associate that to this is the end. But in our particular journey, cancer has brought a lot of good things to us as a family. It has made us a lot stronger and it has really changed the way we look at life in a better way. It doesn't mean that every day we are in this emotional stability. No, we have lots of ups and downs. But I think this situation has taught myself and my family how to develop or how to find all those tools that we do have inside of us to face this situation in the best possible way. So for that, I even have to say thank you. But, that's our reality.
Currently, our situation, we do not know exactly what's going to happen because we're waiting to see what Dr. Sartor has to say, but I do know and I do know this from my heart and very strongly is that we are very confident that my husband is at the right place with the right people. Thank you, cancer, because you're giving me this opportunity to help somebody else perhaps. So I feel very grateful for that.
On the overall, one of my biggest tips would be to live day by day, to make sure you establish a good rapport with your doctor, with your team and to make sure that you accept your emotions just because it's so normal. It's normal that you're not aware that you're not ... If you are depressed, okay, well, you're depressed, but accept it and be an advocate for yourself because at the end, all cancer patients and the families and people around them, we are really special, we really are because we did not, in a way we did not ask for this battle. We did not want to go into this. But for whatever reason, we were given this battle to fight. So there has to be a reason beyond all that what we can see and perceive. So we are very special and we have to feel good about it, that we really are very important for it.
And I wanted to thank Tulane University and the Dr. Barata and his team and for the wonderful things that it's great to have people like Dr. Barata or Dr. Sartor or Dr. Kendra or all the people involved in this world to make this happen because we patients and caretakers, we desperately need them. So it's just wonderful that they are doing this tremendous work. Just like the opportunity I'm being given now, you guys being able to do this and to be able to share with somebody else, go for it, belief and it's a word that we use a lot all, belief, belief. And I know that when somebody is in pain or going through the darkest days, it's not something to really accept, but I think we all have to, like I say, if we have been given this battle, it's because somehow or another is going to make us grow as persons. So let's go for it. That's all we can do.