A Lot To Catch Up On
I have “several irons in the fire” as they say, a reference to many things happening all at once.
First, still navigating my latest late side effect diagnosis, radiation fibrosis induced lymphedema, classified at Stage 2, meaning moderate to irreversible. I need to get some forward progress going, or I am going to end up in trouble. The healthcare system has not been my friend with this process for sure, taking days just going back in forth for simple communications and relays, wasting huge amounts of time.
As I am now frustrated enough, I have reached out in a new direction, and yet another health network, I am hoping will help me with this issue. I have surprisingly gotten in as a new patient, next week. Though I have to chuckle, the note says “1/2 hour visit”. Good luck with that, as it is going to take a half hour just to go through my history, another half hour to go through all the radiology studies that have been done, and then there is the exam, and then the plan. Surely this will take even more than an hour.
Unlike lymphedema caused by lymph node removal as performed with breast cancer, radiation fibrosis induced lymphedema is actually a scarring, fibrous tissue that compresses and damages lymph vessels. The cause in my case still has not been identified yet (as to where the blockage or restriction is), and I have been dealing with this since July. I am down to about 10% use of my arm and hand, and if this is allowed to progress to Stage 3, it will be much worse for me, if the skin begins to rupture and I develope any kind of infections.
To say I am frustrated is an understatement. At least I am not dealing with my heart and these delays.
Speaking of my heart, with everything going on, I blew right past the 5th anniversary of my TAVR, my aortic valve replacement. Amazing the additional time that I have been given by a procedure I was not going to be qualified for just ten years earlier. Today, the valve is doing just fine while my congestive heart failure continues to hold steady.
In a follow up to my last post, I know that my daughters occasionally read my blog, especially when I want themt to see what I had written about them. When it comes to my survivorship, my daughters have distinctively different approaches with my health, though both expect the same. All they have ever known is “Dad gets through it,” every time. So one daughter will just absorb the information and move on, letting me know “you got this Dad.” Whereas my other daughter is like McCauley Caulken in thhe movie “Uncle Buck,” lots of questions.
So I am not going to rehash the last post, but my daughter had one question, “was there anything ever that you were not going to tell us?” I was trying to figure out what she was looking for. I was hoping she was not referring to the ultimate end.
During my divorce, before my daughters turned 18, I always told them, I will answer everything they ask me honestly. But if there was a question that I did not feel comfortable with, I would let them know, “this is one of those questions I cannot answer right now.”
But now, with both adult age, I had a different answer, as both are told in real time what happens with my health. I explained that back when they were both under 18, still under the orders of a custody order, I needed to be careful what was discussed about my health.
Nothing to do with the divorce, their mother was not very empathetic when it came to my late effects. Many spouses and family members are like this because they do not understand the complexities of long term cancer survivorship. On more than one occasion, I heard her tell my daughters “your Daddy’s fine, there is nothing wrong with him,” which of course was not true. I had a reason for what my daughters were told or not told, but lying to them was not what I wanted. I have several examples of children being lied to in that way, things ending badly, and that trauma lasting a lifetime.
But all of a sudden, through the divorce, denial became a weapon with custody. Their mother saw an opportunity to assist her with custody arguments. Though I doubt she changed her mind in belief of the seriousness of the issues, she did realize that she might be able to use the information in her favor.
With one of my late side effects being my conditions with my heart, and having made five trips to the ER between 2012-2013, their mother would argue that it was unsafe for my daughters to be alone with me, should something go wrong. What may seem like a legit concern, actually more of a convenient argument, fortunately, legally it has not standing to discriminate against a parent over health concerns. Not to mention the fact that no one was more aware of my fragility than I was. Which meant that I had a “in case of emergency break glass” plan. I knew of other fellow survivors who were also in this similar situation. Because we know things can change all of a sudden, we have to have things prepared, and an emergency plan should I have any health issue was always in place before my daughters came to me.
So my answer to my daughter was, the only time I did not tell them anything about my health, was when I was concerned about it being used against me. Now in their 20’s, they understand that. But today, they are told before things happen, to be included in my treatment plan, to be aware, and hopefully, to not be afraid. Because after all, “Dad gets through every time. He just does it.”
