I saw a post from a friend of mine that really touched my heart and I want to talk about it. This friend has a lovely daughter that suffered from cancer and then a relapse and is having continuing health issues that are saddening and frustrating. It’s as if the initial battle is over but the long-term war is still going. Worse yet, my friend has the impression that no one understands or cares.
Well, I’ll tell ya right now that I understand AND care! This is a firsthand testimonial for me as well. I am a two-time successful cancer warrior with all kinds of ongoing health issues and consequenes. I am grateful to report that I successfully battled both hodgkins lymphoma and primary cns lymphoma. Yep that’s right, whole body cancer and brain cancer, all in a four-year time span. And yet, I am very grateful to report that I still get to be here to crab about it. That is awesome! Who thought I would still even be here in as recently as two years ago. Yep, definitely a big win. Also, I have decided to turn my crazy experiences around and create positive things out of them like my Chemo Peeps group on Facebook. I have decided to use what I went through to help others and pick up the slack for everyone else who is potentially letting them down. I am totally in!
As far as my poor friend, I completely get how if even the acute battle is over, the ongoing war continues, probably forever or at least five years or so. This is why I am afraid to even use the word survivor because I think it implies a kind of permanence that is not really realistic. Heck, I am not even a total of five years out from my first cancer, much less the second. Wow that is a lot to think about. I have all kinds of ongoing medical issues that are the result of my cancers and the treatment for my cancers.
Let’s rattle off a partial list. My thyroid was destroyed with my first cancer treatment, which was not picked up right away until I was almost comatose from sleepiness. That is an ongoing juggling battle to titrate the correct dose so I can remain upright and not have my hair and skin get too dry and fall out. I now have a recurrence of my sleep apnea due to the crazy thyroid and all the fluid weight I retained after all the steroids. Hello cpap my old friend. I have ongoing neuropathies and myalgias that are very unpredictable and sometimes make it hard to move any given day, but I press on anyway. I have all kinds of side effects from the Keppra I was put on at the time when my brain was so full of cancer it was seizing uncontrollably and put me into a coma. We are talking Keppra rage, weird neuropathies, tingles in all the wrong places, crazy reflux, etc. Thank goodness I am on less Keppra now so the side effects are less, but not absent. Realistically, I know I am always going to need it though because I have enough scarring left in my brain because of the treatment that that alone can cause seizures even though the tumors are gone. My diabetes has gone a little nutty as well but I am busy wrastling that back under control with additional medication.
Let’s also talk about the left over emotional and psychological consequences. Yes. Yes. I have a certain amount of ptsd and mistrust after all my medical craziness. I get the slightest twinge and quickly assume the worst, before I try to self-calm and re realize that it is not likely. It takes me a minute though. I have had to go back on my Prozac for this and resume therapy to manage my emotional consequences and help me maintain any sense of calm.
I also get bothered by the fact that as a patient, you essentially have the perception that you have become boring after your particular physician’s part of your treatment is over. It’s as if their little tunnel approach excuses them from caring significantly about you afterward. Again, I am not saying that this is intentional, but I really feel that they have to be better about maintaining a vested interest after your acute treatment is over. It is by far not over for you and they still make you follow up at inconvenient times for at least five years afterward. I feel like this should mean more to them.
The bottom line is, yes, it is correct that the long-term war is still ongoing even after acute phase treatment has been completed. It does matter what you are still going through. Many people are unable to understand this, but, I have to admit, I don’t really need them to or want them to. I don’t wish on anyone what I have been through. This is not an experience I want to share with anyone. It is terrible and draining and awful. I am going to choose to support others and be there if they need me and share stories and support as needed. That’s all I can do at this point. We all need help sometimes regardless of what the issue is at the moment. I hope we can all try to be there for each other. Have the best day that you can and never stop advocating for yourself. That’s all for now.
Dr. Katz










