Sunday, April 9, 2017

I Have Come to the Conclusion That ....

I must accept my chronic condition -- I am an ovarian cancer survivor -- like I do the weather.  My health is somewhat predictable, but not guaranteed. Much like experiencing weather in Maryland, my health can change in a heart beat.  This is particular true when it comes to my stamina.

(Please note, this is MY personal experience. Each persons will be different. I just find it therapeutic to write using "You." It makes me an observer and allows me a little more control.)

You see, once you have undergone the surgery for ovarian cancer, leaving you with a rather long vertical scar on your abdomen, your insides are never the same again.  Now, if you were one of the "lucky" ones who happened to receive intraperitoneal (IP-directly into the abdomen) chemotherapy, as I did, your survival rate increases.  Along with that, so does your chances of growing scar tissue which will trap your intestines so you will experience partial bowel blockages.  These will land you in the hospital for several days.  They may even try to stick a tube down your nose to control the vomiting and not have any luck in getting it down.

Now, if you happen to have THREE bowel blockages within a six month period your surgeon may decide "enough is enough" and will set you up for exploratory surgery to remove all the scar tissue. He may just cut you and give you an even longer vertical incision that now runs from top to bottom of your abdomen.  You may be discharged in two days only to discover you now have an ileus and your colon is now somewhat paralyzed.  You most likely will end up back in the hospital with uncontrolled vomiting.  You might even have to stay for FOURTEEN days.

When you get home you will be so happy to finally take a hot shower in your own home.  But .... when you are drying off the bottom four inches of your incision open up. Of course, YOU can't panic because then your loved ones will.  Of course, you stay calm and call the surgeon.  It's now 10PM and you are texting him pictures of the incision.  You find a friend who will take you to his office the next day. Following his instructions, you have your husband pack that wound every night and wait for it to heal.  After six weeks, you will give up and go to the Wound Center. (Man do I wish I did that straight away, ignoring their requirements on the web site of "your wound must not have healed for at least six weeks".)

Your wound WILL heal. You will be able to eat again. ....... But oddly, now one half of your abdomen hangs down a few inches lower than the other side.  Apparently you weren't put back together evenly.  You will think, "that's okay, I am healthy now." And slowly, very slowly, you will regain some strength.  You will regain hope. "Finally, finally it is over."

You will experience an entire MONTH of feeling good and even begin the long awaited decluttering project. You will be happy. You will be proud. You will enjoy life. You will sweat once again and be tickled that you can now work to that level.  And then ... and then ....

One day you will get dizzy and fall and really scrape your chest up. You see, the neurologist has diagnosed you with neuropathy of the veins.  That means that your blood doesn't return back through the veins as easily as it should. In my case it means, if I dare put my head lower than my heart, I will definitely pass out. What's the treatment? B12.  Sometimes they will give you medication to increase your blood pressure, but I am not a candidate for that because I am being treated for high blood pressure.  I NEED high blood pressure medication to stay safe.  So, I live my life, trying as best I can, not to put myself in those situations.  I have learned many tricks.

One day you might find yourself in the bathtub taking an epsom salt soak trying to relieve your body of abdominal pain. You might just decide to wash your hair while in the tub rather than standing in the shower. You might put your head forward and lean it down so you can rinse the shampoo out. And .... then you might find yourself with that familiar dizzy feeling. There will be a split second chance to raise your head and recompose yourself.  You might just picture your husband coming home from work and finding your drowned in the bathtub. You quickly make a mental note of yet ANOTHER thing you can no longer do.

Speaking of "mental notes" ... chemo-brain is real. Don't even try to say it isn't real. My psychiatrist and neurologist say it is. The treatment? Well, there isn't any.  But you just have to learn how to work with it.  If I'm tired or sick .... I don't make important decisions.  If something is important .... I write it down.  I am very high functioning, but when my bottom falls out, it's over. It used to take me days to recover when I grew exhausted, now I usually can recover in one day.

Now jump ahead to eight months after your magical scar tissue removal surgery.  You might find yourself getting "that feeling" again. You dread another blockage. But, hey, you are experienced. You know what to do. You consume only liquids and wait for it to pass. In the hospital they use an IV, but you know it is safe to stay home and treat it as long as you can get your liquids down. You will listen to your body and know when it is safe to add yogurt.  You will break down and finally buy Ensure. You will joke about adding Kahlua or Bailey's to it. Only, maybe you aren't joking.  Past blockages resolved in three days. You hope for the best. You count your blessing in that you aren't vomiting. But the pain when you swallow is almost unbearable. That's new. But, like all things, it will pass with time.  Time - a very long seven days this time.  That entire week you can barely do anything. You take the dogs on short walks. You make your family simple dinners or they order carry out. And .... you ... drink .... your .... broth.

And just like that, you are eating a taco salad to celebrate your daughter's 23rd birthday.

I am moving toward acceptance of the unpredictability of my future. I can still plan to do the grocery shopping on Wednesday, but I must accept if suddenly I am unable to do so.  Instead of growing frustrated when I find myself having a week where I am physically unable to do things, I must feel that frustration, but then move on and just give my body the rest it requires. I am blessed that my family is so understanding and accepting.  They accept that from day-to-day they cannot assume I will be able to do what I did the day before.  And I .... I must learn to seize the "good" days, the strong days and say, "today I can declutter," "today I can walk the dogs longer."

But I must always listen to my body carefully. A dangerous storm can show up at any time that will require me to lay low until is passes.  Frustrating? Yes. Seize the day must be my mantra. Seize the day ... whenever I am able.


Sherrie said...

Thank you for taking the time to write down these thoughts. I need to remind myself that I will never be the person I was before Ovarian cancer happened. As women we do tend to forget and push forward, trying always to have the brave face for our loved ones. Thank you, for reminding us that it is OK just to "be".

TACParent said...

Sherrie, you are very welcome. We are tough, but we are also human.