When the Cure Feels Worse than the Disease. ~ Debra Caplin

Via on Jul 19, 2011

First, a word of caution/encouragement, for the men. This is definitely a girly article. That said, I encourage you to read on, if you have even one woman that you care about in your life. Your knowledge could help them.

By nature, I am a very open person and feel that our whole purpose in swirling around together on this planet is our inter-connectedness, so talking about experiences seems a natural extension to the way I live on this earth.

For those of you who follow my blog, you already know of my ongoing health issues. The last time I wrote about my personal situation, I left off thinking I might be ready to make a decision on prophylactic care. I stalled though, and while deliberating my options for the millionth time, something else completely unrelated came up.

I recently had a hysterectomy. It’s doesn’t sound scary, I know. It is common and many women have had this procedure done. It is so common that I am still completely reeling about how little I knew to expect, and how little I was told beyond the basic limitations post-op. It was not an elective procedure to treat uncomfortable symptoms, it was a medically necessary procedure to treat and cure cervical cancer.

There is a ton of good news in this story. First, the cancer was stage 0 and non-invasive. Woo-hoo! Good news.

I was told they would not need to remove my ovaries, because they were healthy and not affected. Yeow! More good news. That meant I would not be forced into early menopause since the ovaries would still produce hormones. Yes! I was also a candidate for laparoscopy since my diagnosis was not invasive or more advanced. This meant three little holes, one in the belly button and the other two over each hip bone, rather than a large abdominal incision. All great news! (I still feel this way today, by the way).

There is more to the situation that should be explained. First, cervical cancer is slow growing and therefore, with regular pap screenings, is very treatable when caught early.

When I found out that I was going to need to have this surgery, it was five months after my last pap and cone biopsy to evaluate and treat what is known as CIN III, which is absolutely not to be left untreated. The cone was supposed to also be the cure. With persistent CIN III, removing the exterior cells is the treatment – until it’s not. I returned after five months for a repeat pap and the presumption of my doctor was that it would be normal due to the nature of a cone biopsy, being a deeper removal of cells, than the other procedures I had undergone over the three years prior. None of this is really all that horrific in the world of cancer and potential diagnoses and outcomes. I have certainly been more scared with some of the pre-cancerous findings in my breasts in years past, as I knew cervical cancer is very treatable when caught early, and mine was.

When I received my results, I was away in Mexico at a wedding. I wasn’t overly concerned because I hadn’t actually had a good enough phone connection to hear the specific reading. When I returned home, I called and went over the results with my doctor again. It was then I realized I didn’t have the same CIN III I had had all the times before, but a reading I had never even heard of. Due to the result being more serious, even after having undergone the cone five months earlier, my doctor said it was time to consider a hysterectomy which would put this to rest indefinitely. I was in full agreement.

There was a sense of urgency due to the fact that the new result meant there could actually be glandular involvement, not just surface cells, which also meant that it had potentially not only spread further up the cervix, maybe even to the uterus, but also that it might have been more invasive at this point.

I was scared for the first time. I felt my doctor had dropped the ball five months earlier by not being more aggressive. Given my continued repeat CIN III readings and lesser treatments that didn’t seem to be effective in curing anything over three years prior. My current doctor encouraged me not to wait and old friends that I checked in with back in Florida also expressed urgency to follow up. I began to frantically look for a new doctor that could not only see me immediately and run the new test (an endocervical biopsy), but could also do the surgery quickly if I was deemed an appropriate candidate for laparoscopy.

I was told that the recuperation was much shorter then an open procedure and that I could be up and around, nearly back to normal life after 3 weeks time. Sign me up! I had my son’s Bar Mitzvah fast approaching and I wanted to be able to have this behind me. If I could have the surgery within two weeks I would have exactly three weeks to recuperate before his big day. Perfect – until it wasn’t.

This is actually where the point of my writing this begins. As I said, this was not elective surgery. It was “do this or wait until the cancer grows and spreads.” I feel very fortunate to have found a wonderful surgeon that saw me immediately and performed this procedure perfectly. You can barely tell anything happened at all. There is one tiny scar visible. I am not writing to bash my doctor or the amazing hospital where I was treated. I am writing because what happened after is so surreal that I am still in disbelief and as one friend said this morning, when I said I might blog about it, “ you may actually save a life. Do it!”

After my surgery, I was doing amazingly. A little tired, but I never even needed a pain killer. At 6 days post-op, my doctor removed the stitches and put on my steri-strips, sending me on my way, saying she had never had a patient who was doing so well, so fast. Yep, more good news!

Two weeks after the surgery, a switch flipped off. I began to feel incredibly depressed and lonely. I knew that lying around in bed recuperating was tough for someone as active and social as I am, and given the 14 or 15 surgeries I’ve had in the last 14 years, I was not a stranger to feeling off afterwards. Or feeling frustrated that I couldn’t resume my wonderful existence here in Boulder. But this depression was indescribable. It came on so quickly and so pervasively that I couldn’t really even make sense of what was happening. At that point, my son’s Bar Mitzvah was a week away and I switched into survival mode. Knowing I had to get through it, but mentioned to my children’s father who had flown in ahead of the Bar Mitzvah from Miami, and also to the dearest person in my life at the time, who lives in Atlanta, that I felt depressed. I was miserable and could not articulate what I was feeling. It was beyond sadness. It was physical feeling. It was excruciating.

I continued to plug along preparing for the Bar Mitzvah, but all the while my sadness was growing and the loneliness I was feeling was down to the core of my soul. I felt crazy and was looking to find reasons for it in my life. Over the next few weeks I sounded unhappy and discontent about things that were not even real in my life. I will skip the details of how I drove the man crazy with sad emails of how I was unhappy and lonely, but I will skip ahead to the night I began to completely come unhinged.

I had mounting anxiety. I’d been sending emails, knowing they were crazy and unfounded, yet I couldn’t seem to reign myself in or control any of the feelings racing through me at warp speed. One night, about five-and-a-half weeks after my surgery, I snapped. Atlanta called it my Glen Close moment –  I would say that was accurate. I was calling and calling and feeling terror for no apparent reason. I felt like if I didn’t speak with him I would sink into insanity. In reality, I was calling out of fear and reaching out to keep one hand above the water while my mind was slipping away.

On the receiving end, there was a desire for space to contemplate the miserable emails of weeks past. Long and short of it, no bueno. I share all this because the feelings and behaviors were like an out of body experience. That night, thankfully, in a moment of clarity, I stopped calling across the country and reached out for a friend that I knew would be there for me. She told me what I could not see for myself – this was not me and I needed to call my doctor.

That same day I was scheduled to make a very important business call. I had no ability to dial the phone. I had already been walking around for nearly four weeks with a giant lump in my throat and it was all coming to a head. I couldn’t open my mouth to speak because if I did, I knew every last bit of what was holding me together was going to come pouring out over that phone line. The lump of sadness in my throat was like a plug and I was fearful of removing it. This was also why I was relentlessly trying to call Atlanta. I couldn’t understand why I couldn’t make the call that afternoon and I was hoping he could talk me down off the proverbial wall.

The next morning, my doctor and I spoke. She explained that even though they had left my ovaries that I might be experiencing severe hormonal backlash from the procedure. This is what I cannot believe never had been discussed before. She explained the anatomy and why it happens… The ovaries are supplied the majority of their blood supply from two sources, the aorta and the uterus. Well, they had cut half the blood supply off when removing the cervix, uterus and tubes during my procedure. She said it takes several months for the body to adjust to the new way of the world. Ok. Great. I was now armed with information that very clearly could have been useful for weeks before. Not only for me but the people close to me.

Two days later Atlanta was gone. I never was able to tell him what was really going on or that I wished I had understood and asked for help sooner. In truth, he could have been in my home, next to me, holding my hand and the loneliness and discomfort I was feeling would have been there, because it was coming from within. I wish I could say this was the worst of it. It was – until it wasn’t. The doctor had me scheduled to come in about nine days later, because when we spoke I had figured things would begin to settle back down. We had determined together that the “switch” I described was exactly when I began ovulating the first time after surgery and I figured I was days away from completing the first full hormonal cycle. It had to get better! Until, it didn’t.

Over the next week, I began to feel overwhelming anxiety and feelings of death. I had never known such terror, and simply willing myself to be okay was not helping. I also knew the facts from the doctor. The thing about knowing something intellectually and not being able to control it is that it’s even more maddening. I wasn’t given anything to regulate the insane chemicals in my body, I was just offered information – and believed that that should have sufficed.

When I started to understand how majorly my hormones were out of whack, I made an appointment with my acupuncturist, hoping that might help regulate them faster. When my dear friend and practitioner put the needles in my body, I began shaking from head to toe. I believe her exact words were, “Dude! Your nervous system is fucked.” Indeed, it was. Two weeks post-Glen Close, I was feeling increasing invasive thoughts of death and ultimately, 36 hours before my next appointment, feelings of suicidal thoughts. In hindsight, I couldn’t separate the intellectual knowledge that this was not okay, and I needed real assistance from these despondent, unrelenting dark thoughts and terrifying wish to make the physical discomfort cease.

I had a friend stay in close contact the last day prior to the appointment, which was first thing Monday morning. That was nine days ago. I went and discussed all this with my surgeon and she immediately offered medication and a psych consult to see me through until things stabilized. We determined that yes, my nervous system was experiencing serious backlash. Not only had they jacked my hormones with the procedure, but they had no knowledge of my compromised nervous system from PTSD – a side effect of multiple incidents of violent crime when I lived in Florida, which any major shift like that will effect, not to mention the effect of anesthesia. All combined, a perfect storm of central nervous system hell.

In hindsight, I should have called her back immediately the week prior and demanded help, but when you’re deep inside a severe and sudden depression, you simply can’t see things clearly. There are no words that amply articulate what I felt, or how god awful the aftermath of this surgery was for me. Amazingly, five days after the right medication was prescribed, I feel nearly 100% myself again.

I write because my sister in law had the same procedure two weeks after me. She contacted me this morning because she is not doing well. I think I may have sounded a bit more extreme, but she is suffering nonetheless. It makes me wonder how we both went through this operation in two different states and neither knew to expect any, let alone, all of what we are left dealing with. I think about the morning after my surgery, in this teaching hospital, when the residents and interns were on rounds with the supervising doctor that morning. They discussed my wildly amusing need to know the weight of my organs the day before in post-op, but the supervising doctor never told the students or me of what I might be able to expect after my discharge. It was a perfect opportunity to teach about caring for the whole person, but that never was addressed. I wouldn’t realize the dire necessity of this until weeks later when my puzzle pieces all came together.

The personal cost was great. I may not be able to repair the last eight weeks on the business front, which was to move forward with the new T Bar concept. I lost an important person in my life that had been the source of laughter and smiles everyday for a year before all this, and I almost lost the fight. I am lucky because I had friends that helped get me through until I was able to get the help I needed and began to feel better. I am left wondering what would have happened if no one had been there for me. I can’t begin to explain how badly I needed the pain to stop and I never would have thought that this could be the result of such a common surgery.

I believe that being vulnerable is the greatest tool in acquiring improbable strength. I am grateful that I was able to ask for help and expose my vulnerability, humiliating in the moment though it was, in order to move past this awful experience renewed, stronger and happy again.

I share openly because there is no reason for someone to suffer like this silently. I share openly because three of my girlfriends said please do. Because if they had not lived it with me, they would never have believed it could happen either. I share openly because my sister in law is still not feeling better and can’t believe it’s real either. I share openly because my two beautiful children had to watch this happen and I don’t want my daughter to ever have to experience the same (and I hope my son will have acquired a knowledge that will help him be more compassionate with the women in his life). We all joke about hormonal craziness, but it’s only funny until it isn’t. I’m okay now, and knowing how far reaching this blog is, it seems the right course of action to share so that maybe someone else, somewhere, will not have to endure the same.

This morning, while pounding the keys of my keyboard to write this, a man came by my table and left a card that read, “Hi. You are the nicest thing to happen to me this morning. Are you in the market for a friend?” I smiled when I looked up at him and he said, “your light shines 50 feet away.” I said thank you and he left.

My light does shine again and I am grateful.

Peace, love and light—always.

____________________________________________________________________________________

Deb Caplin is an “entrepreneur.” Your guess about what that means is as good as hers. Really, her most important job is her kids – though she’ll mention that under her breath at the moment as they’re in France without her for the the few weeks of Summer. A Miami native (which is perhaps where she gets her die-hard hankering for sports fandom), Deb has lived in Boulder for 10 and ½ years. She believes in the power of women, feels it’s perfectly okay to carry a cape in her purse, and that everyone deserves hot lingerie. Keep an eye out for The T*Bar 2.0, the lingerie business Deb is musing over during her daily bike rides in the Foothills of Boulder. You can read her blog and follow progress of The T*Bar.

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17 Responses to “When the Cure Feels Worse than the Disease. ~ Debra Caplin”

  1. kurlykim says:

    Thanking for sharing your story, blew me away! Love and light xx

  2. [...] but was her death any less terrible because it was avoidable? Or was it avoidable at all? She had a disease and the treatment didnʼt work. Or at least speculation says the treatment didnʼt work; how she died — whether or [...]

  3. thetbar says:

    Thanks for sharing. Things are much better and my road bike has been a great help in the process. Improving every day.

  4. anthrogurl says:

    Thank you. SO important to hear another story confirming the DANGERS of hormones. My sister started struggling with depression and eventually suicidal attempts all after having started birth control pills….she tried many different "therapies" until I suggested she STOP taking birth control pills (after having friends who had had similar depression/hearing voices/suicidal attempts after starting the pill). Sure enough, she stopped the birth control, and things gradually started turning around. Now she has "normal" growing-up issues & difficulties, but the heavy depression, hearing voices, and suicidal attempts are gone. I am a strong advocate of bringing attention to THE DANGERS OF HORMONES. Again, thank you and may you continue with a successful recovery.

  5. jenn says:

    thank you for your story

    i had a hysterectomy (complete except my cervix) 3 1/2 years ago due to estrogen positive cancer, and this story is familiar to me. Mostly when i was in chemotherapy treatment, my ovaries shut down for a short time and i lost my mind, crying all the time (which isnt me) and angry, all the emotions, suicidal….i had to go to a psych hospital while in treatment, no fun! hormones are not taken as seriously as i wish they were. no one warned me about all that.

    thanks for posting, and i LOVE the note the man left you, so amazing!
    jenn

  6. thetbar says:

    Thanks Jenn
    I LOVED that note, as well. There are always those irreplaceable moments.
    Glad you are sharing your story also. Hope you are feeling well these days.

  7. Anna says:

    Amazing and compelling story, beautiful ending, and educational. I am now armed with knowledge I wouldn't otherwise have…thank you. I'm glad you are getting well.

  8. amber says:

    i'm have feelings so similar to what you've described. maybe not to the extreme but the feelings of doom, despair and anxiety non the less. i'm trying to find out how to wade through. thank you for writing this. is there anymore specifics you can provide, perhaps medications that helped? acupunture helped? etc….

  9. Thank you for posting this. I have been struggling with heavy periods for , it seems like forever, and am one step away from a hysterectomy which I am very, very reluctant to have. I suffer from bouts of depression and the after effects of your hormone hell sound like more than I could bear.
    Thank you so much for sharing. I am even more conviced not to have a hysterectomy now.

    • Chrystabel says:

      My hysterectomy was voluntary, and it gave me back my active life, no longer dreading heavy menstrual periods with their clotting and pain. You have not posted your age, but I was only 31 and would have had to face at least 15 to 20 more years with 1 week (or more) every month being hardly able to move without pain or soaking through pads.
      With the knowledge that Deb has presented in this article, you can take steps to be prepared for the hormonal shift. I would do the surgery again in a second. I have my life back for good now! Bless you and best wishes whatever you choose.

    • gasmenagerie says:

      Ablation is a wonderful choice for those symptoms!

  10. Tammy says:

    I too had a hysterectomy (vaginal) and kept my ovaries. (Stage 0 cervical cancer as well) My recovery was amazing- running 3 weeks later. I became increasingly agitated, constantly yelling at my kids and husband. My hair was starting to fall out in clumps and making me even more crazy. My surgeon initially offered me hormone replacement because he warned me my ovaries could be in shock post surgery. I declined because the thought of putting anything unnatural in my body sounded ridiculous! My surgery was in May and by August my husband asked me to reconsider the hormones as he could not recognize me and was sad for our kids. I started in August and I can't believe how quickly life changed. I wished someone would have really pushed the hormones on me and gave me a clear picture of what hormone deficit looks like. I had no idea what was truly going on until I started on estrogen. I'm glad you got it figured out before you went crazy too:))

  11. Chrystabel says:

    I had an elective hysterectomy 4 years ago due to endometriosis/adenomyosis, only a couple of months after the ending of a difficult relationship partly based on the fact that I was experiencing reproductive issues and wanted this surgery. Fortunately it was done laparoscopically, my ovaries & cervix were left intact and I was told that it would prevent the shock of instant menopausal symptoms.
    This description of the insanity and depression are *exactly* what happened. Almost 3 weeks to the day after the surgery. I never told anyone how bad it got. The people around me assumed it was due to the traumatic relationship, and I believed it, fervently trying to cope with this out-of-control madness, blaming it on myself, on the ex, never once correlating the physical and psychological symptoms with the hormonal shift. This was very much like what the elder women in my life have described menopause as being, only it seemed I was experiencing so much more intensely.

    Thank you so much for posting, this could indeed save some women from such horror, and it has been a load off my shoulders to know for sure that I am not alone.
    Bless You!

  12. cindycap says:

    I know too well the horrors of sudden-onset depression ala Glenn Close as you described.Hormones can pull perfectly sane women to death's door and it's no joke. Along the way are the damaged relationships, killed business deals and lost jobs. Be it from surgery, menopause or a medical condition or medication, hormone surges, imbalances and fluccuations cannot be overlooked as mere inconveniences.

  13. gasmenagerie says:

    I had the same procedure over a year ago. I had a young woman doctor that did explain that the trauma to the ovaries may cause some hormonal issues for a bit. I was already medicated for depression so I didn't have that, but I did have some vague symptoms of menopause for a few months that have now gone.

    I'm so glad you received help – even if it was a bit too late to salvage some things. I know how devastating depression is. Mine also led to some crazy Glenn Close moments. My children will forever remember the time mommy threw the magic markers at the wall and they exploded in fantastic colors everywhere! How lucky I was to have a doctor that recognized my symptoms and worked with me to find the right medication and therapy.

    The procedure itself really is a modern miracle for women. I had an AM surgery and left around 4pm that afternoon. I was walking the next day and able to do everything but strenuous exercise and lifting in about a week. What a change from the horror stories I had heard from older women in my life!

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