Living With The Inevitable
I will not beat around the bush. It sucks knowing that your body is going to betray you, it is just a matter of when. And I am not talking about the natural order of life. For many cancer survivors, such as myself, the trauma of our treatments has left us dealing with so many complications. It becomes a matter of awareness, knowledge, and willingness to fight on.
This post was prompted by a reader of “Paul’s Heart” who simply responded with an “ugh” at the fact, that those of us survivors how are aware of our late effect issues, know that it is not just a matter of if the next event will happen, but when. For me, it does not mean that I have stopped living at all. Quite the contrary. I can appreciate my doctors who tell me that they have every intention of making sure that I not only see my children graduate high school, but if they choose to get married, be able to witness that, and if my children bless me, to experience grandparenthood.
But let me tell you, it has taken a long time to get to the point where I still have that hope of reaching that stage in my life. And each time a fellow survivor passes away from their late side effect issues, those of us still on this earth, are reminded just how fragile our bodies have become. It is a safe bet that only those of us in health situations like this understand this. Chances are, our spouses will not understand what it is like. Our friends will not understand what it is like. Here is my reality, and many other’s as well.
April 2008, emergency heart surgery caused by damage from radiation treatment which prevented an imminent fatal heart attack. In the words of my cardiologist, “it was not a question if” I “would die, but when.”
March 2012, after going to bed feeling fine, I woke up four hours later, in immense pain, projectile vomiting, carried out of my house on a stretcher in front of my children, to be told I was septic from pneumonia. This was due to a combination of radiation and chemo damage.
December 2012, a second bout with pneumonia, again after feeling completely fine, this time involving both lungs. It was directly related to radiation and chemo damage, as well as my susceptibility from having lost my spleen to Hodgkin’s Lymphoma.
I have had more than a dozen more incidents since then, all related to my cancer survivorship. And if there is one thing I have learned, and no one will tell me differently, these situations come up without warning, but are also complicated by my tolerance for pain, and willingness to put up with discomfort.
I do what I can, when a situation does come up, to make sure that those who are treating me, understand that no one understands my body, or the risks involved with treating me for any of my health issues, better than me. If I am unconscious, I have to have faith that those treating me, will see my med-alert bracelet, which sends them to my wallet where I have two laminated cards explaining my health history, and preventative measures that must be taken, to make sure that recovery success has its best chance.
And as serious as all this is, I do not live my life in fear of it. Because I know that it can all be gone tomorrow. I have said goodbye to too many other long term survivors who have passed. So I do live each day to the best I can make it.
You are totally on the money, again, with this blog Paul. It is such a comfort to have those words in front of me that mirror exactly how I feel. I am only now acknowledging, understanding and respecting that I am a long term HD survivor or 45 odd years and how it has affected my approach to life and that I have a lot to share that could help others. Thank you for your words.
As always, I have to recognize the lengthy survivorship of yours. While I currently have my sights set on 30 years, if I am fortunate to see 45, then my doctors will have done what they said, and got me to see my children grow.
Paul, I am just wondering what you have listed on your medic alert bracelet. I have a medical bracelet, that I never wear, warning that I have had bleomycin and to give me the lowest possible dose of oxygen.
I really don’t think most doctors realize our late effects and the complications we face as a result.
First, what you have on your bracelet is critical. Before being aware of my issues, I underwent my heart bypass surgery without protection for the use of oxygen. And this is one of the first things that I learned.
On my bracelet, because of everything I deal with, I simply state to call the two doctors listed immediately, and then to refer to my wallet cards. With my cards, one card is how to treat someone asplenic which is critical to surviving any event. The other card lists all of my health issues as well as my treatment history.
Do you think we should be wearing or carrying a warning for LIFE that says we had bleomycin?
My cancer centre did not have a straight forward answer for me on how long I should wear my bracelet.
I’ve read that the issues with oxygen can pop up years later and if the oxygen is given in high amounts that it can literally kill us.
Michelle, I would most certainly do that. ER docs know full well about Bleo, but they would never recognize a patient who received it unless told.
I have restrictive lung disease, 76% capacity with my lower left lobe described as “dead”.
Bleo is mentioned on my medical card.