Hysterectomy Gone Wild

No one talks about it but half the population has one. A uterus. And now mine is gone. It served me well, carrying triplets to 32.5 weeks. I stretched it to its fullest capacity and it held strong. Growing three babies and keeping them safe all that time. That was 24 years ago. Now it was ready to retire and head south to endless summers and swim up bars. Come with me on the journey of how I got here. 

I have had many medical issues in my lifetime. Less than some, more than most. The last solid year has been one of the longest by far, and one of the most trying. Back in 2020, my MS flared up severely. I could not use my left leg. This led me to get IV medications every six months. You may remember my social media posts about those times. Sitting in the chair at the infusion center, getting what we thought was my “liquid sunshine”. And it was, then. It helped me to walk again, have energy again, reduce the progression of my MS, and live my life again. I am grateful for all of that. Scientifically it was the best treatment for me at that time. However, with most things, there are side effects. It was never lost on me that aggressive treatment can bring forth aggressive effects. Yet, the ones I was having were all limited to the pains of having an IV. I am not as needle-phobic now, but I still am. The inconveniences included a full day at the hospital and the allergic reactions during treatment. These reactions needed to be monitored, corrected, and managed. Then back in November of 2023, I had routine blood tests. I needed to check everything before my next treatment. My doctor discovered a hint of an issue. My white blood cells were very very low. So we waited a few weeks and tested again. Still too low. Hoping this was a temporary thing we gave it a month, then two months, then 4 months. Yet they did not come back up. Also, my red blood cells decided to rebel as well. Becoming oddly shaped. At first only a few, then a few more, then too many to be considered a temporary setback. After further testing (gotta love the testing) it seemed that my bone marrow was stressed. Why? It doesn’t pay bills. It doesn’t have to make dinner, go to work, or raise kids. What does it have to be stressed about? Nevertheless, it was stressed and not producing white blood cells, and it was producing some groovy-shaped red ones.

If you do not know this about me already I am an information seeker. I need to know everything. I particularly take an interest in all things medical (and forensic, psychological, sociological, and anthropological…) I love to learn. I learn something new every single day. We all do, but I pay attention and can tell you on any given day what it was. Today I learned the sign for groovy, which will come in handy at the next Deaf chat. Sorry, meandering road here. So I started to read everything I could find on the medication I had been taking. I hoped to find a way to still get treatment even with the stressed bone marrow. What I found was it caused it. Confirming all of this with my neurologist, we agreed to wait it out. Most studies show it is temporary and very rare, being permanent would be extremely rare. Nonetheless, I seem to find myself in every small percentage in any given situation. I was married at 19. The divorce rate was near 100%. Yet here we are. Having triplets at that time was unlikely. The chance of making it to three babies was less than 5%. May I introduce you to my 24-year-old triplets. Those small odds can be really good too.

I have had my tonsils removed TWICE. Yep, twice the infected tissue regrew, and two years later had to do it all over again. See how I can get into sticky situations with my ability to find small percentages? No, I do not play the lottery. Yes, I have maybe 3-4 times in my life. I did not win obviously or I would be writing this from my Swiss chalet. 

As we waited to see if this was going to be temporary, permanent, or what, I got worse. The fatigue settled across me last year around January. It cost me a trip to Europe that Jon and I had planned. The thought of packing was overwhelmingly exhausting never mind going. A heart arrhythmia I had had since 14 started to increase dramatically. My blood pressure could not sustain itself. In October, I was hospitalized. During that time I did get to enjoy other things thankfully. I became an expert at managing my energy. Taking time to learn everything about how to do it, and applying it to my schedule. If I did something one day, I might need two days to recover. Therefore, I measured each activity, trip, and task in terms of risks versus rewards. Was it worth being exhausted for a week after a long weekend in Tennessee with family? YES! Was it worth being couch-bound for an afternoon to spend the morning deep cleaning the kitchen? Well, sometimes.

After the hospital stay in October and numerous tests there, my doctors and I decided on a course of action. First, fix the arrhythmia so my heart would pump better, and aid in my blood pressure stability. If you read my previous update on my medical journey, you know I underwent heart ablation. This procedure was to correct long runs of SVTs. Well, it fixed the long runs. Yet, it left me with a huge blood clot in my heart (Bob the blob). It also gave me shorter, more frequent runs of SVTs. As a bonus, I got PVCs, who put together these swag bags? Thankfully they are benign just annoying. Nonetheless, the power of the mind is so strong we do not use it nearly enough. I have already trained my brain to ignore them. 

Unfortunately, all of this also left me with a massive fear. Suddenly I became very mortal (like I was anything but before). I had to have phase two postponed due to the blood clot. My blood pressure was at prolonged near-fatal lows. I almost went into surgery with Bob the blob and did not know. All of it had shaken me to my core. I could die? I almost did. That is a lot for the mind to process. I have always said I am living to 107. 49 was way short of that goal. I never ever thought I wouldn’t make it. Do you? Our minds often ignore the tiny fact. None of us are getting out of this life, alive. But sometimes it smacks you in the face. The sting is real, you feel it, you are awake and wide-eyed staring at the ceiling thinking what if. I have a strong faith in God. I know where I am going after I shed this mortal shell. Some of you may be surprised to see me up there one day, I know. I am not afraid of what happens when I die, but I am afraid to die. Normal human response. 

After rescheduling my surgery for the end of January, I had to take medications for Bob the freeloader. I needed to be careful, especially in the first few weeks, about what activities I could do. No flying, no strenuous exercise (what has been my excuse for the last 10 years?). At first, I could not drive because there is a fear of airbag hitting my chest. This could turn Bob into a million little Bob babies traveling all over my body.

The medications were no picnic either. Blood thinners, so I can’t cut myself. Hello, I am a terrible cook. I do not have good knife skills. If you tell me I can’t cut myself, even my minor skills disappear. You should see how I hold a butter knife now. I am a fall risk from the low blood pressure, yet falling now has added consequences. Little Bobs, brain bleeds if I hit my head, internal bleeding if I hit something else. Hello, anxiety welcome home, go ahead and get cozy in your favorite chair.

The amount of medication was very high so more risks. They also put me on birth control pills. Oh, that was a fun ride. I am sensitive to medications and put me on hormones double the normal dose! Mood swings anyone? I asked the doctor what the side effects of the birth control pills were and he said weight gain. I ignorantly thought ok, I believed if you do not put the food in your mouth, you cannot gain weight. No problem. What he should have said was hunger so bad you want to chew on your own arm at times. The mental battle of no you do not need salt and vinegar potato chips at breakfast was real. 

This would all be rectified when I would get the next surgery. A hysterectomy. Yep, taking out that thing that no one talks about but half of us have. At 49, I had 5-6 years before menopause according to my test results. I had no symptoms. My extremely knowledgeable and talented GYN provided this best guess. So we needed to stop the bleeding. As the date of surgery approached I became more and more anxious. Fearful I would not make it through the surgery, and I was not being irrational. My mind perceived a clear and present danger. It could not understand why I was willing to walk right into it. I was only partially willing. I was not going to do it if Bob the blob, the blood clot was still in my heart. By the grace of God one week before surgery Bob was evicted! That had me feel a little less nervous, but truthfully if it was still there I was planning to postpone. 

So here I am today. 16 days post hysterectomy. The surgery itself was fine, the pain after was bearable. They tell you it takes 8-12 weeks to fully recover. Some do it in less, some need more, everyone is different. We decided to keep my hormone-pumping ovaries. This way, I would not have to go on replacement hormones. I remember the tasty-looking arm on birth control pills—no thanks. 

Even though recovery is different for everyone, everyone needs time to recover. I had no issues moving, bending, or walking all slowly. I could shower and dress myself with some discomfort but not too bad. The good is that it’s over. My uterus is gone and never will I have a vacation interrupted again. Ladies, you know what I mean. The bad is I am early in recovery and I am not a patient, patient. The ugly is those hormone-pumping ovaries are in shock! No one told me that was a thing! My body is running around yelling where are my keys, and I am saying hanging right there! But they are keys with a dead battery in the fob. It can take months for them to wake up. They need time to realize everyone has left the office. However, they still have a big job to do. Wow, the hot flashes!!! And that is not a hot flash, that is my internal temperature being turned up from keep warm to incinerate. I have a new found respect for those who have gone before me. Plus I have blood sugar drops so they cause similar symptoms. I wake up 1-3 times a night in half asleep, groggy brain and a sweaty body. I change clothes, test my blood sugar, and eat a snack and a glucose tablet. Sometimes, I go back to sleep because it was ONLY a hot flash. Bring in the fans, and cooling sheets, I am considering putting the AC back in the window. 

Back when I was at my post-op follow-up, my doctor shared some news with me. Before the surgery we knew from all those tests, that I had a mass/fibroid in my uterus. Every test showed no chance of caner, but the pathology report came back. Pre-cancerous mass. I asked my doctor if left untreated would it become cancer. He said it would it was only a matter of time. Praise God the whole thing has been removed, there is no sign of anything else, and nothing more is needed. Talk about good timing.

All of the new experiences I am having while I recover will make for many more blog posts to come. For now, I am resting partly by choice, mostly by fear of my family scolding me. They have all taken over things I cannot do. They accompany me to the doctors and bring me comfort with anything I need or want. They show me incredible love and support. I could not do this without each one of them. Jon, my husband, has been a tireless source of support. He thinks of my needs before his own. He has spent countless hours in waiting rooms. He hides his fears of what-ifs to make me less nervous. I am grateful for an amazing family. I am also blessed with so many friends who have called, texted, sent gifts, prayed, and loved on me. I can not wait to be fully healed to love back on you all. 

I may be down, but I am far from being out. I have faith and know that my body will heal. It may take longer than I want, and it may be harder than I thought, but I am stronger than I know.