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Archive for the ‘Husbands’ Category


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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After a month in the ICU, I was moved to the surgical floor, where I spent the second month recuperating. Still hooked up to many drains, tubes, suction devices and food being administered by IV, I was unable to eat anything by mouth. I passed the time binge watching old TV shows. I was only just able to focus my eyes after all the anesthesia left me out of focus for weeks. On October 18th, the wonderful hospital staff secretly made and hung banners to throw me a 60th birthday party in my room, in lieu of the dinner I was supposed to be having in Lyon, France. My sister, nieces, sons, husband and cousins came bearing gifts (no cake) and got me outside for a breath of fresh air on a beautiful fall day.

The chief of the rehabilitation floor came twice to assess my ability to handle the necessary amount of rehab. Both times she said I was not a candidate, as I could not cope with the amount of rehab they require for admission to their unit. Their suggestion was to receive rehab at a nursing home. Only one would take patients on parental (IV) feeding. I steadfastly refused the option. I wasn’t leaving the hospital until I could go home. I had several unplanned physical therapy sessions when the staff had the time to fit me in. They started by standing me up. Next time I used a walker in my room to take a few steps. After several days I could shuffle to the to the bathroom myself! Then I ventured into the hall with my walker. The next day I used the cane. The day after, I walked once around the floor only holding my IV pole. Then another lap, and another, day by day.

The last thing standing between me and my home was being able to walk up 10 steps so I could enter my house. I asked the physical therapist to take me to the stairwell to practice. I pulled myself up those steps – and kept going, forgetting I had to also come down. Twenty steps. I could do it. Suddenly, talk of a nursing home ceased. I was going to be able to go directly home!

Still unable to take in anything by mouth, I was sent home on Halloween with a central line for IV feeding and antibiotics. Drains and tubes came along too, but at last I would be in my own bed after two long months! It was both exhilarating and scary to be removed from the care I still depended on. Visiting nurses and infusion specialists set me up with home care, teaching both my husband and I how to manage the feedings and medications. It was hard to be in a home environment and unable to participate in the usual activities: showers, meals, outside activities, social visits. At times, the hours were endless. My husband became nurse and provider, a job he did with amazing grace and care.

To be continued . . . . . .

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“Gratitude” is becoming a cliche. Everybody’s talking about it. “It will heal you,” they say. “Letting go of the negativity prevents cancer,” shouts the Internet. Even doctors are saying taking time to count your blessings is good for your health. Is this just a passing fad, or is there something to it?

I did a Google search on “Gratitude’s healing power.” There are about 998,000 hits. Wow, there must be something to it, even if the Internet is not the source of scientific material. But wait, there are hits from respectable sites like Harvard University, the Georgia Psychological Association, The NY Times, A PhD professor from University of California, Davis, WEB MD, the National Institute of Health. What do they know that some people don’t?

I’m no scientist but I have a degree worthy of being able to analyze whether a study is reliable. I know how to judge whether the population studied is large enough, diverse enough (or not, depending on the study), the variables were controlled, the methods used in the study, and I understand basic statistics. But I also trust my gut – A LOT!

I know that when I feel grateful, I feel good. It’s THAT simple. We encounter so many negative, energy-sucking people in every walk of life, and it seems to cut across every socio-economic group. I’ve met wealthy people who have everything, including great support networks, etc., who just feel they are always lacking. And some of the very seriously-down-on-their-luck people, that I had the privilege of serving lunch to at the soup kitchen, were joyous and grateful for the simple meal and my company.

Many neuroscientists studied brain activity under conditions of gratitude and observed positive brain activity. Biological markers like immune system function, sleep patterns, blood pressure, etc., were positively affected in grateful people.

So without further ado, I give you the short list of things I am grateful for, even though I was just diagnosed with a genetic defect that will throw my next few months into turmoil.

1. A supportive and loving husband and life partner, who loyalty never wavers.
2. My two sons, who are beautiful human beings and bring me joy beyond explanation.
3. Friends and family members who offer meals, rides, errands, and check in on me to make sure I’m OK.
4. Co-workers who didn’t bat an eye even though my absence will mean they have to work later or harder.
5. Access to the finest surgeons, who were able to respond to my needs very quickly.
6. An upcoming 60th birthday trip to France, in between operations, to rest and recharge.
7. A lovely and comfortable home.
8. The ability to buy the food I want and need to nourish me and protect my health.
9. Two dogs to cuddle with and love.
10. Any art supplies and tools I need to express my creativity.

LIFE IS GOOD!

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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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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?

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There comes a point when we know a loved one is headed into the final chapter of his or her life. The hospitalizations become more frequent and the recoveries slower. The mind forgets what date it is, what foods one enjoyed eating, what objects are called. Adult diapers become necessary. Walkers, wheelchairs and physical therapy equipment, become our survival tools. Daily activities like dressing, bathing, cooking and laundry are no longer possible without help.

One can question the value or purpose of living like this. Indeed, I have, and know I don’t want to live in such a state. I don’t want to be a prisoner in my own body or mind. I don’t want whatever assets I have left to be obliterated in short order, by the enormous cost of sustaining my life in this manner.

My family knows my position on this. Only we can make these decisions for ourselves and it behooves us to share our wishes with our families and friends. It would be unfair and terribly burdensome to ask them to make these decisions for us.

My husband’s mother has been living for some time now, blissfully unaware of the rest of the world. She isn’t suffering physically, nor mentally. She is fortunate to be able to afford full time care. She smiles when anyone comes to see her and expresses pleasure to have visitors – even though she doesn’t remember who we are from one time to the next. She seems content, even in the face of her declining health. She never complains and is ever sweet. In her innocence, acting like a child, she agrees with our request to leave the IV in her arm this time, but soon forgets and takes it out again. Having forgotten her food preferences, she now eats things she wouldn’t have in days past. She takes our hand and tells us she loves us; something she never did before her dementia.

Her clock is not the one we all March to. She sleeps when she is tired (which is much of the day), and gets out of bed when she is restless (day or night). She is obsessed with the clock and remarks frequently on the time. She still compulsively feels the need to clean up her surroundings, albeit in a more physically limiting way now. Some traits remain while most of them have vanished along with her mind.

She is so different from the person she used to be, so it is bittersweet to be with her. For now, I find comfort in her apparent pleasure during my visits. But when I return home, I am deeply saddened that life has to wind down in such a manner.

While this isn’t what I want for myself and I can express this while of sound mind, I can only hope my family will have the strength to let me go when it is my time. Even if I smile at them and tell them I love them.

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I missed my kitchen. These are strange words coming from someone who used to struggle to think of what to make for dinner. But somehow (a little late for my kids unfortunately), I have come into my own, in the kitchen. It helps that I love it since we did a mini renovation, and made it more pleasant to be in it.

But the real pleasures are found in the zen of preparing the food, knowing what is in the dishes prepared and those with whom we share our meals.

So after being away nearly 3 weeks, I got busy in the kitchen. It was around Passover, and I was not hosting a seder, but for some reason (maybe its because I was returning from Israel?) I felt like cooking traditional Jewish food. Chicken soup, brisket, potato kugel, matzah brie, vegetables, lots of vegetables, charoset, hummus from scratch (from dried beans), cabbage salad, beet salad. My fridge runneth over.

I entertained many friends, sharing meals and stories, and lots of laughs. That’s the best part. With 11 of us crammed into my small kitchen, nothing could be more comfortable. There is nothing like the warmth of a kitchen filled with food and friends.

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