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Archive for the ‘Family’ Category


Our annual trip to Maine was up in the air. Should I go so far from my medical team (8-10 hours by car)? If not, should my husband go for his much deserved vacation and leave me home alone? How would cars be juggled? Would I see my west coast son if I didn’t go? All these questions had to be considered. I had already cancelled my teaching obligations and gave up any possibility of attending any art classes myself – two of the things I look forward to each year.

As we approached the weekend we would leave, I felt good enough to chance it. We planned only one week, rather than our usual two, to hedge our bets. Being in the woods, sitting on a screened porch overlooking a lake was just what the doctor ordered. I spent little time in the kitchen. My boys and their friend cooked and we went out to dinner. I even ate a 2.5 lb. soft shell lobster!

The healing power of family and nature is certain. I was out of bed all day (albeit resting and sitting a lot). When I got back home, I was able to be out of bed, doing things around the house, food shopping, laundry, etc., before tiring.

Now that I feel some recovery is occurring, I need to face the rest of the journey: another surgery in the risky zone and a minor one to complete the mastectomy/ reconstruction process. But I have survived this nearly one-year nightmare and feel almost human again, and that counts for something.

This portion of the experience is being wrapped up with this post. If I write any more about related subsequent events, they will stand on their own. Thank you for sharing my journey with me.

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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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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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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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“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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As I sort through the incredible volume of possessions accumulated over 40 years of my life, I am ready to let go of more than I ever have before. Maybe it’s the practice I got emptying my mother-in-law’s home, which had more years of accumulation than I have. Maybe it’s the “clean start” one wants when moving to a new home. Maybe it’s the realization that I will never learn guitar, I will never need 2 shredders, I’ve long since replaced the china closet with another, my kids have taken or stored everything they want to take from my collections, and the overwhelming feeling of organizing and packing what I want to keep.

As I put my guitar into the hands of its new owner, she admitted she might never have the time to learn, what with a job and a small child and all. I smiled and nodded in recognition of my 35 year old self. The kids didn’t want the furniture, so it was time to move it out. And all those duplicates? Time to reduce to one of anything, sell some things online, some through local tag sale sites and prepare for one helluva tag sale.

The difficult thing is that some things are attached to dreams. The guitar for instance. I always wanted to play it. Now I forfeit that opportunity because I no longer have the instrument to play. There are others. It doesn’t really matter what they are; I let go the dream of doing, with the disposal of the object.

The great thing is that every time I shed a piece, I feel lighter. I am freeing myself of something that needs care, cleaning or attention. I am replacing money in the coffers for the incidentals that will be needed in my new home. It’s all good. Lightening my load, lightens my head and heart.

Except for art supplies. I am parting with but a tiny percent of an entire room full of things that could create art by combining them, when creativity strikes. Yeah, that stuff is going to take a whole truck by itself. I’ve already identified the beneficiary of all of it when I die, so all it will require is one phone call by the family.

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