Tag: Illness

Someday I am going to have to relearn that one twinge somewhere does not have to mean that imminent doom is upon me.

Cancer related PTSD is real people. Did you realize that one in three cancer patients suffer from cancer-related PTSD? That is over 30 percent. That is actually a huge number. First of all what is PTSD? PTSD stands for post-traumatic stress disorder. Post traumatic stress and post traumatic stress disorder are two different things. Post traumatic stress is a normal response to a stressful event. It’s like getting nervous before a scan or a blood test. Post traumatic stress disorder takes things a step further. This consists of severe stress responses to triggers that last longer than 1 to 3 months. They are responses that are so severe that they can prevent you from going to appointments or even living your life. It can be very disabling. It is nothing to be taken likely.

So, who is at risk? Everyone who has had a specific traumatic experience is at potential risk of this. Some examples would be combat, abuse, assault, violence, mental or physical disasters, severe injury, or illness, like cancer. You are also more at risk if there is any previous history of anxiety or depression or you do not have a good support system.

You have to keep in mind that there is not one single cause of PTSD. It is different in terms of triggers and severity for everybody. The symptoms can range from nightmares and flashbacks or intrusive thoughts. There can be avoidance behaviors of people, places, or things. There can be a general disinterest in participation of any kind. There can be guilt or shame about your particular trauma. There can be insomnia. There can be a feeling of general disconnect. All of these are kind of attempted internal protection mechanisms that our brains come up with. But, none of them are actually helpful.

For me, the biggest trigger is any slight hint that something could be wrong such as a pain or a headache that I cannot explain. It immediately sets my brain off to a path of potential disaster if I don’t put a stop to it right away. I mean, to be fair, it makes sense, my previous headaches and pains led to me being in an unresponsive coma with a head full of brain tumor and mush. I am right to be leery and a little hypervigilant. It is my own hyper-vigilence that has helped save my life more than once. But,I still can’t let it rule my life. I have spent enough time locked up in hospitals and struggling to get people to listen. I can take a break right now. I have fought every fight with valiance. I have all the scans and the tests that prove that I am doing ok, including a scan that looks like an actual tumor-free brain. Win! I am going to admit that it is still a work in progress. It is hard not to jump to the bad news. I am just going to keep doing my best and not beat myself up about my jumping to possible bad conclusions. It is what is is. Every day I get to wake up and see the sunshine out of the window of my own house is a blessing. I just have to keep believing that the worst of days are behind me, and get help when I need it.

Dr. Katz

It’s Just a Little Tougher to Bounce Back Nowadays

Wow. I have to say that having cancer has brought about more change than I realized. I think I tried to partition the whole experience in my mind as a discrete entity with a finite beginning and end. It somehow made it easier to trudge through with a positive attitude when visualizing an actual light at the end of the tunnel.

After the end of chemo, I am slowly realizing that, while that visual was helpful, it was not necessarily realistic. My journey did not abruptly end when chemo did. As I have discussed before, there have been many after effects and pitfalls since and I am learning about new ones every day. Each one I try to embrace, while fighting the little chip on my shoulder that I have to deal with it in the first place.

Most recently, I got my first actual illness outside of chemo in the first two and a half years. Yes. It’s true. Now that I think about it, one little-publicized actual positive side effect of the pandemic has been that we all have had less of the regular sick season viruses, etc because we have been wearing our masks, not doing as much, washing our hands, trying to avoid sick people, and not touching our faces as often. Granted, some of these precautions (like hand washing) should not have been new additions to our routine. Nonetheless, they have all contributed to less routine sickness. Anyway, my point is, that I haven’t really been sick in over two years. So, when I got this crappy gi virus, it really through me for a loop. Number one, believe it or not, I wasn’t really used to being sick. ( I get it. That sounds ridiculous considering I just went through cancer and chemo.) Number two, I was that much more stressed out about the repercussions of missing work because the economic strain has been significant from all the previous missed work. Number 3, it hit me a lot harder than I remembered from previous illnesses. Number 3 is what got me the most. I am just not bouncing back as fast I think I should be. There are a lot of reasons why that could be true. One could be my loss of perspective on being sick outside of chemo. Another could be that chemo has left lasting side effects that keep my body from fighting off sickness as well. My kidneys are not working as well so I get dehydrated more easily. My thyroid is still dead so I get fatigued and my metabolism is altered. The list goes on. You get it though right? There are plenty of reasons for me to have trouble bouncing back from regular illness. So, I shouldn’t worry, obsess, and beat myself up about it. But, alas, I do. I get distracted and instead of doing things to help myself get better, I waste time feeling guilty about who I am letting down this time, as if I haven’t left enough people down with all the cancer stuff. It’s kind of a vicious cycle.

So, here’s the thing. What do I do about it? The fact of the matter is I am the only one that can do something about it. NO one is making me feel this way but me. The guilt is all mine. I have to make the decision to accept this one more thing about surviving cancer. There will be changes that last long after the cancer is gone. They are not my fault. They are not my punishment for things done wrong. They just are. I can chose to move forward…or I can chose to be held back by things that I cannot control. I say forward it is. Otherwise, my recent win was all for nothing.

Dr. Katz

Every day CAN’T be a good day. It’s just not statistically possible.

Boy is that the truth. I have been priding myself on having a good day, good attitude, and positive mojo as much as possible with everything going on….even when I’m gasping for air and unwinding like a clock or repeating a test for the 100th time. But sometimes, I am just mad and frustrated and over it. Sometimes I have a bad day. I really can’t afford to beat myself up about it like I do. Just another something to work on. For me, I have to realize that a bad day is not purposeful or the result of something that I did. They just happen sometimes. I have to just let it roll and move on. Dwelling on it won’t help me or anyone else.

Trust me, I want to be a role model for myself and for patients. I want to be the one to bridge the lack of adequate communication gap between the patient and the doctor. This is who I truly am. But sometimes, I am just a patient who doesn’t know what the hell she is doing because I have never done this before.

This experience has made me realize even more how poorly we communicate the details of every day care. I want to be part of the solution in helping patients through the tough stuff the right way. I am already thinking of ways that I could participate in facilitating change in the care of cancer patients.

The first thing that I would change is to provide all patients with a navigator to help them wade through this process, not just the ones in a study or with a “more popular” cancer. It goes with what I have said before. All cancers matter. All cancers are scary. All cancers could potentially kill you.. Every patient needs someone to help them through outside of their family.. The more appointments and doctors get added to the team, the more confusing and potentially convoluted things get. Our family members are the ones closest to us and they love us,but they have never done this before either. They don’t know how to instruct us and they can’t really understand what we are going through. I hope to God that they never have to.

This brings me to the second change that I would make in the cancer patient process. I would assign each patient a mentor….someone who has been through it before..someone who can really understand first hand. I know it helps me when I ask a question about a symptom I’m having if I can speak to someone who actually had it and made it through. Actually those conversations have more impact on me than asking my doctor about it. I realize that there are cancer support groups out there, but I am talking about one on one mentoring.

Another thing that I would like to change in the process is to provide mental health support and counseling to every patient. We always say that attitude is everything and that quality mental health has a positive impact on healing. It seems logical then that each patient should have their own counselor or therapist to talk to regularly. It just makes sense.

I guess that even on my bad days I am still trying to do something productive. I really can’t just let it go. I know that things are not always going to go the way that I want and sometimes I won’t accomplish a darn thing besides survive to the next day. It is just so hard mentally to think about letting some illness get the better of you, even for a day. I guess the better way to think about it would be to realize that your body is telling you that you need a break today so you can get to the next day. After all, it’s a marathon,not a sprint. Ok. I’ll work on that.

Dr.Katz