What do you do when your world, not just the world in your head that runs constantly, but the world that is your life starts falling up? I have been in this cycle for a year, although I propose that some of these aspects have been falling up over the years of my life.
Almost a year ago to the day, I had a hysterectomy. While it was difficult, there weren’t any major physical changes after. I went through some emotional questioning of who was I without these specific body parts that felt like they led my life. I worked through that rather quickly but before I could really take a breath, Ken spoke of having difficulty with his eyes. It was still October. What occurred from then through Christmas Day were blood tests, heart tests and then the brain MRI.
The tumor on his pituitary gland was sitting on his optic nerve, and, luckily, we were told that this type of tumor is basically always benign, but that he would not be able to have it removed through his nose like many can because the tumor was too big. Brain surgery was not something we had thought about or planned on, but there wasn’t a choice. From the end of December through now, I threw myself into him. I watched him, I tried to engage him in conversation about the surgery, not simply the mechanics of it, but how he felt. His response was always the same as he would say, “Of course I’m scared and anxious, but we have an amazing doctor and everything will be okay.” I finally realized that I had to stop asking that question because I needed to allow him to cope in whatever way he needed to to get through that day. But I still watched.
Because I am always genuine and real in what I communicate to people, these are the thoughts that I had if something went terribly wrong during or right after the surgery. Gratefully, my therapist brought me out of this rabbit hole quickly.
How do I help our 16 year-old get through what would be the worst thing that could possibly happen to them in their life? How would I get through that? How would we live without him? Where would we live? Would I have enough money to take care of us? How would I be able to be a mom and a dad at the same time?
There were only a couple of nights where I sobbed quietly, lying in bed next to him while he slept, while in complete panic mode. As dark as these thoughts were, how could anyone not have them when brain surgery is involved?
Somehow, the three of us got through this terrifying surgery, difficult recovery and its aftermath, but since March 20th, the day of the surgery, my life has been entirely about him, and for a specific time, it truly needed to be. My love for him felt like it was oozing out of my skin because I couldn’t take the experience away from him, the pain or anything else about it so I did everything else. I did the tasks and for the first six weeks it was 18 hour days, day after day, which started early, in order to bring Kit to school and would then go from there, and I would never be ready to go to sleep at a good time because the only time I had to myself was at night and I needed it. Things eased after that, but I have not been able to go to sleep at a better time as of yet. There are definitely other reasons for it at this point, but it certainly heightened during that time.
And then, shortly after our one vacation a year, on the Connecticut shore, which, as usual, was absolutely fantastic, I noticed my stomach was not feeling great and I was getting quite bloated. And, as I am always quite open, the constipation began, as did the doctor visits: primary care, gastroenterologists, colorectal surgeon and all said the same thing which was to take MiraLAX and figure out how I can finally have a colonoscopy as I have had three failed preparations (never actually making it to the actual procedure). These were most likely due to the medications I take and their need for food and I do not have the capacity to drink the amount of fluid that is necessary the night before. That journey began about 4 to 5 years ago, and all I want is to have it done as I have a grandparent on both sides of my family who had colon cancer.
I know that going into instant menopause and hormone changes can cause constipation, but I didn’t know how that could be connected given the amount of time that had gone by and only one doctor questioned that by asking me if I thought it had to do with my hysterectomy, which was obviously quite strange as the patient should be asking the doctor for the answer to that question. At this minute, magnesium oxide seems to be helping a little bit, but I do need more time on it. The frustration is quite real. I felt some validation, though, about a possible link to my instant menopause when I ran into a friend who also had a hysterectomy two weeks after I did and started experiencing the same constipation symptoms in July. We compared notes and I updated her after my colorectal appointment. I, at least, feel like I am not alone in that.
While I am in research mode about having a colonoscopy with a completely different prep, I can’t find anyone to help me and I don’t understand why as there is absolutely no way in the world that I am the only one who cannot do these particular preparations. I found colon hydrotherapy and actually the first hospital in the country to use it, Danbury Hospital, in the state where I live, doesn’t use that anymore and it’s seen as highly questionable in terms of a proper colonoscopy preparation. Of course, the NIH article I read, which was published two years ago, said differently in their study, but I cannot locate a doctor who allows it, as of yet. The search continues.
At the same time, about two months ago my back pain became quite worse. The bulging disc at L4 (lumbar region) which we have been aware of for the past four years was acting up and the arthritis and my joints were also not behaving. My pain management doc gave me some steroid trigger injections, which usually provided some relief, but they did not. The past month, things have been deteriorating quite quickly where I can’t stand in one place, even with my expensive comfortable sneakers on, for more than five minutes without a lot of pain. My several mile walks each day are now slower in pace, otherwise, if I walk at my usual pace, which is fast, I start to feel the pain. My MRI that I had a few weeks ago showed everything had become much worse since my last MRI a year ago in August. There are joint issues that involve a pinched nerve, in addition to the bulging disc, and the arthritis has grown. There is some fluid between joints and a cyst has developed as well.
And now it’s time for surgery. Another fusion directly above the first. I only have 2 weeks more until I see my surgeon after waiting the past five weeks, hoping that someone would cancel and I could get in, although knowing that would not happen with this very well-known and well thought of surgeon. I want this surgery done as soon as possible to hopefully ease my pain, but also because I need to be functional while looking at colleges with my 11th grader, especially as the next months pass by and that process becomes more involved. I did call to ask about scheduling, which will depend on various factors but that he is booking in November, which surprised me, as I was afraid I would be told some time in the winter. I will continue to wait for that appointment because I don’t have a choice and continue to manage my pain the best I am able.
There has been too much this past year for my family and it continues almost in this fluid fashion, like water running nonstop. We have been through a lot, have become stronger through it, but there is no way I can say it has been easy. While I try to find myself again after so much time with me “being” just about Ken, there are other things to contend with which makes this search for myself more trying. I’d like to turn that water off.
My therapist always works with me to look at the positives in my life as I can have a hard time with that, even knowing all of the good that is right in front of me. With all of the unbelievable difficulty and unimaginable things that I have endured this past year, I am grateful for my husband, my absolute love, and I am grateful for our amazing Kit, whose ongoing growth and maturity blows me away. I am so grateful that my 85 year-old mother will still go on and on when we talk on the phone after I tell her several times that I have to go. And I am grateful for my relationship with her and grateful to have such good memories of my father, even as I sob, at times, missing him so much. I have two older brothers who are crazy and successful and smart, only because they married and gave me two more amazing siblings and I am, of course, grateful for my niece and my nephews and my in-laws and countless friends that go back to my childhood and overnight camp and college and beyond. Maybe I am the luckiest person on the planet and perhaps I should think of myself that way.
All of these hardships that we call life make me stronger every day even when I’m having a panic attack and crying because I get through it, either myself or with the help of others, and I’m only able to do that because of my strength. All of these things have been falling, but not down, they have been falling up, as if they began by touching my toes, worked their way up to my stomach and then to my heart, which then led to my brain. Those are for the hard things but so easily match the good that is falling up, like our beach vacation and putting my toes in the vast ocean, the water washing over them as I slowly walk into the water where it hits my stomach and while it feels so good, there is still a shock of cold, but I keep walking in, and it hits my heart, in the warmest way, and everything I’m sensing comes from my brain and it’s the best feeling.
This will continue to be a struggle for me, to notice and think of all of these positives, but I will keep trying my best. I do know all of the good I have in my life is vast, like the ocean, and this good I am so grateful for, falls up.
