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Archive for the ‘Emotions’ Category


In March of 2012 I wrote about connecting with people. How by some mysterious force, we are drawn to someone and find a connection. I’ve had a couple of new experiences in this past year, in spite of my limited movements within the outside world.

An old business associate of nearly 40 years, turned friend, emailed me about an alumnus of her college. Did I want to meet her? She had recently moved to my town, shared my religion and knew no one here. She wanted to get involved in her new community and my friend thought we would hit it off. I trust this friend; she knows me well. So of course I said yes. Explaining to this stranger my limited outings, unpredictable medical limitations and inability to eat like a normal person, I suggested lunch at my house. Conversation came easily and we discovered some additional mutual friends and interests. We share political views so there was much fodder for conversation and potential action. The relationship quickly turned into a familiar, comfortable friendship, one I am so grateful for.

On another occasion, the search for someone to do alterations led me to a woman from a neighboring town. She is the mother of a lady in my town, who I know only through the Facebook page our town’s ladies belong to. She was kind enough to come to my house so I could try on the clothes. There was something special about her and she felt the same. She too joined me for lunch soon after and I have been to her home to drop off or pick up more things she has sewed for me. We are on a “hug and kiss greeting” basis and express an affinity for one another like we’ve been friends for so long.

My therapist tells me I am blessed with the ability to make friends easily. I would have to agree. But I attribute it to my father and his mother who also had many friends due to their ability to talk to anyone about something they could find in common.

My life is so enriched by this gift. Some people’s involvement in my life have endured decades and many challenges; some have come and gone in short order. I’ve relished each friendship for its uniqueness and rich dimension they have brought to my life.

I’m a lucky woman.

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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.

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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 . . . . . .

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My cousin’s favorite holiday is Thanksgiving, and we shared the holiday with her and her husband for many years. This year, she was in the midst of packing to move and I wasn’t travelling, so we endeavored to have Thanksgiving at our house, even though I wouldn’t be able to assist in preparations. Our family, cousins and sister’s family chipped in on the cooking and cleanup to make a beautiful Thanksgiving feast. And to my utter delight, I was able to take my first bites of food beginning that week. Thanksgiving was particularly poignant as we all were so grateful for my survival and beginning recovery. Recovery began and proceeded, marked by small advances through December and January. One drain out; then another. First shower. First food after months of IV feeding. Weight gain (I had lost 15 lbs.) Walking further. Driving. Pain lessening. I scheduled the prophylactic mastectomy for June, sure I would be well enough to have the next surgery in seven months.

To be continued . . . . . .

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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 . . . . . . .

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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 . . . . . . . . .

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Warning: Some people may be offended by what seems like a flippant attitude about grave matters but I can assure you I have a healthy, realistic grip on reality.

I was a 32 year old widow. I had just lost my husband to cancer. He was 36 years old. That’s pretty tragic. It’s nothing to laugh at, for sure. So why were my best friend and I laughing hysterically? We got together for one of our breakfast meetings as we planned and plotted to perhaps open a business or something like that. We got to talking about men (don’t female gatherings always lead to that?). We were talking about whether we had left most of the men we had relationships with, or had they left us. I said I instinctively knew if they were about to leave, so I would leave first. So no, no men had left me. “Unless you count Ray (my deceased husband), but does that count?”

We erupted into such shrieks of laughter, everyone in the restaurant turned around to see what was so funny. All they saw was two crazy women with tears running down their cheeks. We would finally gain control, look at each other and erupt again into wails of hysteria.

Granted, you can’t say these kinds of things to just anyone. Some would have you committed for such an “inappropriate” reaction to such a sad thing. But, is it inappropriate?

Humor is a very powerful coping mechanism. I often say if I didn’t have a sense of humor (however macabre at times) I wouldn’t even be alive today. I’ve had more challenges in one life than a whole tribe usually has combined (see last post). So, when a little crack opens up in the dark cloud of any situation, I crack funny, “inappropriate jokes” or laugh at those of others. But never at the expense of someone else.

Most recently, my husband and I were waiting in the surgeon’s exam room, waiting to discuss plans for removing my reproductive parts. We started talking about what comes after that, which is going to be a prophylactic mastectomy with reconstruction. My husband, in typical fashion, started his 20 question routine. “How do they do….? Are they going to do ……?” Of course, I didn’t know anything yet, since THAT appointment is next Monday. He asked me how they remove breast tissue. I told him that all I know is that there are several techniques. The one used for me will depend on my unique situation, the surgeon, and maybe some of my preferences, if I am lucky to have more than one option. He asked (stop here if you are squeamish or don’t like crude humor), “If they have to remove the nipples, do you just not have them anymore?” I explained that from what I have read, they use tattoos to recreate a natural appearance. I said, “So instead of ‘tit for tat,’ it will be ‘tats for tits!” We erupted into laughter, coming in waves, settling down, then roaring all over again when we looked at each other. In such a quiet environment, I’m thinking that the folks outside in the waiting room were wondering what the hell was going on in there.

We composed ourselves by the time the doctor and entourage came in. They were polite enough not to inquire about our outburst. So we conducted business, made arrangements and went home.

Later, while reading a book about reconstruction, I pondered out loud whether I wanted to look the same or take this opportunity to get the perky breasts I never had. My husband asked if he had any say and was there a store or a catalog from which to make a selection. Another round of laughter ensued.

Laughter takes the edge off, opens up lines of communication that may be difficult, brings people together and defuses tension. Can you think of any other free, non-toxic substance that can do all that?

So go ahead and make those “sick” jokes, or at least make some kind of jokes to help you see a potential bright side when all seems dark. If people think ill of you for it, fuck ’em. They aren’t walking in your shoes, and if ever they have to, they won’t have the same support and outcomes as you will.

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