Feeds:
Posts
Comments

Archive for the ‘Depression’ Category


Some time has passed. I’ve had writer’s paralysis. Depression? Check. Pain? Check. Lack of motivation? Check. “Write about it,” people said. “It’s therapeutic.” The words just didn’t come.

September of 2015 brought yet an additional surgery that began another cycle of despair. Six months of living in a Connecticut hospital, waiting for the fistula that was left behind by the surgery to “fix” things, to heal – to no avail. Whatever pleasures I might have had to keep me going were taken. The caring surgeon, clearly frustrated that he couldn’t do more, struggled along with me to know what to do next. Tick tock went the clock. The weeks became months before a frank discussion moved toward finding a more experienced doctor who took on difficult cases. My doctor found a world class doctor in NY who could do it; he would fix this problem and life would finally go on.

But it didn’t. Even he professed he did all he could and suggested yet a higher level of care. Another month, another hospital, another doctor, also “world class.” “Yes, I’ll take the case,” he said. Another surgery; more pain; more time slithering away. A temporary fix; an interim step, perhaps to a more complicated end solution I am not ready to entertain. But this one, we hope, enough to get me home for a stretch, to live half a life. Half is better than none, right?

So I prepare to go home after 8 months of confinement with limited pleasures restored for a time, to take care of the unfinished business of living. It is a mixed bag. Just as the convict about to be released after a long confinement, who lived miserably but knew what to expect. So too, it is with me. The fear of the unknown. Being more than a nurse call button away from help. Being in a different state than my medical teams. And feeling like such a burden to my husband, who has never uttered a word of being burdened, rather expressing nothing but utter happiness that I will be coming home.

This journey is a long one but it is my hope there will be something at the end worth waiting for. Just normal, boring, everyday life is all I’m asking.

Advertisements

Read Full Post »


I had missed my 3-week vacation to France. I sorely needed a good, healing change of scenery. I decided Puerto Rico would be a vacation unlike most of our typical active vacations. Warm climate during our miserable winter, quick plane ride, US protectorate, possible beach visits (I am NOT a beach person, rather an explorer, but it sounded like the right location for recuperating). We booked a weeklong trip for the end of February. I was feeling good.

Unable to lie around, we explored the old city where we stayed in a small boutique hotel. The area is small and walkable when I am in my usual state, but the hills are steep and the temperature was high, thus challenging for this weakling. Still, I enjoyed the sights, food and time away with my husband.

We arrived on a Saturday and roamed the area for the next few days. Then – you guessed it – I was sidelined again on Wednesday, spending the rest of the week a limited distance from my hotel room. I was having extreme pain in my pelvis. We got home on Sunday and I returned to the hospital to look for a cause for and management of the pain, as well as intermittent fevers. In the coming months, I spent three separate weeks in the hospital and many visits to various specialists to test for bladder issues, intestinal issues, infections, etc.

I was discharged the last time, on heavy narcotic medications, with no more information on the cause of pain. Feeling desperate and too sick to seek out new opinions in faraway places, I confined myself to bed most of the day. My appetite had waned and I lost another 5 lbs.

My resolve had thawed. The hopelessness returned. More astonishing was the fact I had held up for so long under the circumstances, for so long before.

To be continued . . . . . .

Read Full Post »


Murphy’s Law, if you are unfamiliar with it, says that if something can go wrong, it will. I don’t ascribe to pessimism, so it didn’t occur to me that anything would go wrong. Yet, this time, it did – in spades.

After three hours of probing to find the parts to remove, and much blood loss, my doctors abandoned the robotic surgery and opened my abdomen. (SQUEAMISH WARNING: if you are easily repulsed by medical description, stop here.) Due to multiple abdominal surgeries, there was a lot of scar tissue and many adhesions. An open surgery allowed them a better view of what they were dealing with. Eventually, after 6 hours and a transfusion of 7 units of blood, they accomplished their mission. But not without consequence. The early days were tenuous and my survival uncertain.

During the next 3 weeks, there were multiple additional surgeries (they called them “cleanouts”). I was in an induced coma for most of it, with occasional moments of lucidity when they needed me to answer questions and/or when anesthesia unintentionally wore off. All I can remember of that time are snippets: hallucinations of my surroundings, when later considered, were variations on the same room I was in throughout; never-ending pain that made me want to die; paranoia that others were doing things to me against my will (sort of true when my husband had to act as my healthcare proxy); things I thought I dreamt, when I actually was experiencing them, and things I totally imagined; feeling stupid, angry and frustrated when I couldn’t find the pain pump or nurse call buttons; and did I say unremitting pain?

In considering death, I begged my family to let me go. I had carefully considered the ages of my children. While not entirely grown, they were old enough to survive without me, I thought. It wouldn’t be their preference or mine to leave this world then, but it was a good alternative to the hell I was living. But everyone kept telling me I was strong – that I would survive and that I should keep fighting. All that did was make me angry. They didn’t know, couldn’t know, what I was physically experiencing. I asked for (I think I asked – or did she just know to come?) a trusted Rabbi and friend who listened to me. She reiterated the considerations of entering hospice (no turning back), yet said she would intervene with my family if that was what I wanted. I was heard! My family couldn’t possibly hear me – they were too close to the situation. I breathed my first sigh of relief.

But something interesting happened during that meeting. Because I felt I finally had a voice in what was happening to me, I loosened the grip on my death wish. I got incredible support from the ICU nurses, helping me get out of bed, even if only to slide over to a chair. My family and friends rallied, prayed, sent cards, took care of my husband and son. My LA son came east to visit twice during my 2-month hospital stay, which was shorter than the 4-6 months predicted by the doctors.

To be continued . . . . . . .

Read Full Post »


My last blog entry was on September 7, 2014. If you follow my blog, you might think I fell off the face of the earth. As a matter of fact, I almost did – permanently. But by some miracle, I still roam the earth, though the past year has not been without it’s challenges.

Background:

In early summer 2014, I learned from a family member that my father’s line carried a defective BFCA1 gene. My cousin spent the previous year dealing with breast cancer, a BRCA1 gene mutation, followed by a hysterectomy, a mastectomy and reconstructive surgery. Now, she urged all her cousins to be tested for this gene, which has a 50% chance of being inherited from a carrier.

Having this gene defect raises a female’s risk of breast cancer to at least 65% (compared to 12% in the general population) and to 40% for ovarian cancer (compared to 1.3% in the general population). There is also an increased risk for fallopian tube and peritoneal cancer. Men with the gene defect have a moderately increased risk of breast cancer and increased risk of prostate cancer. Both men and women have an increased risk of pancreatic cancer.

I met with a genetic counselor, who evaluated my risk and determined whether I should be tested. Family history revealed many cases of breast and/or ovarian cancers among my father’s first cousins. Also, because two of my first cousins tested positive, I was advised to be tested. No hesitation there.

My results came back positive. Rather than being devastated, I was already mentally prepared to move forward with preventive surgeries, if I had the gene defect. I am a take-charge kind of person, impatient, and unwilling to wait around for disaster to strike, if I can do something to prevent it.

I quickly got recommendations for the best surgeons in my area. They recommended preventive surgery and I was fully on board. I chose to first undergo a full hysterectomy, since ovarian cancer is often not detected until it is more advanced. The minimally invasive, robotically assisted, laparoscopic surgery was scheduled for September 9th. That would give me 4 weeks (more than enough time) to heal and leave for my 3-week trip to France with my husband.

To be continued . . . . . . . . .

Read Full Post »


BRAVADO: Real or pretend?

It hit me today, like a ton of bricks. What was it going to take to get me to feel fear? Real fear.

I left the doctor’s office today, aware of the long wait ahead. News about the test he had performed and the ultimate decision it would require. On top of the news I am waiting for about a genetic test that could also change my life, as well as that of my children.

Sure, I tell everyone, “I don’t worry until I know there is a good reason to worry.” And I largely convince myself of it, until today. I am driving home when something akin to panic sets in. I cannot cry, so it is more like a grip on my gut.

I realize I have fooled and pleased the doctor with my bravado performance, and I get complimented for it. It hits me – my pattern. In order not to deal with pain, worry, anxiety, I pretend to be strong. I am strong, for sure, but is it right to always be strong when unsure of your future? I have always sought to please people. A habit I intellectually disdain and think I have overcome, but I suddenly realize it is in the very fabric of my being, and is still very much my modus operandi.

I question why I need to be so independent and strong all the time. It’s not even natural. I know that we are all driven to be liked, and who likes a needy person anyway? But my emotions are on a roller coaster today.

I struggle to even share my feelings with my husband, who has given me no reason to doubt his loyalty. I go to the doctor alone, when all three people I interact with ask me if someone has accompanied me. I find this to be a strange question. I always go to the doctor alone. Oh, I realize now. This is a cancer center. Most people come anticipating potentially bad news, instructions, things they need another set of ears to hear. Me? I’ve been through so much already, I can handle it. I can ask the questions, take notes and put things in my phone calendar by myself. Besides, I think the exam is over precautionary – my doctor is so conservative. But this new doctor says he never has an inappropriate referral from my doctor.

So each piece comes together to paint a picture that tells me maybe I should worry – at least a little. Perhaps this is another false alarm – this is what I have been telling myself. And I will be truly grateful if that is the case. But for now, I think I should allow the feelings that sometimes overwhelm me, rendering me incapable of thinking straight, their proper place.

That would make me more normal, wouldn’t it?

Read Full Post »


The internet is abuzz with the tragic news of Robin Williams’ death. We struggle to understand how someone with so much talent and apparent good fortune could take his life. Depression knows no socioeconomic boundaries. Everyone is equally vulnerable. But those who share his struggle DO understand.
Depression and mental illness in general, is finally coming out of the closet. Those in it’s grip live with unimaginable demons. They are forced to hide them to be socially acceptable, so often struggle alone.
Being famous or heavily relied upon only make the isolation worse. It is difficult, though he did share his struggle, to disappoint the fans. The world’s response to Mr. Williams’ death confirms this. We are mourning the loss of a future without the enormous contributions he would have made – the potential enjoyment of his considerable talent. People say, “What a waste,” or “I can’t understand how he could throw everything away.”
As someone who has struggled with depression, I understand how driven to despair one can be at times. It has been debilitating, a cause of shame, something to hide, something to get through or get over. And it was totally out of my control as were the events that often preceded those times.
But I have never reached the depth of despair Mr. Williams must have felt, that would cause me to take my life.
Let us be grateful to him for the hours of happiness he gave us, in spite of the tremendous toll it took on him. Let us thank his family for sacrificing him for our pleasure. Let us hope he has found peace after all his suffering. And may he somehow know that his life meant so much to so many of us.

RIP

Read Full Post »

%d bloggers like this: