A Respite from the Ordeal

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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Being with my Family – Healing: Part 8 of 8

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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What’s Next? Dealing with the Pain and Getting off Pain Meds: Part 7of 8

I sought out a pain management specialist who stated that the pain could be caused by spinal issues. An MRI revealed some degenerative, age-related lower spine compression. He changed my pain meds to a different form of morphine and gave me 2 spinal injections, which were not guaranteed to work. Neither the morphine nor the injections brought any relief.

A week later, my fever shot up to 103°. I returned in desperation to my original surgeon. Blood tests revealed little evidence of infection, yet I was feeling very sick, unable to eat and so thoroughly despondent. We discussed longer-term antibiotics under the care of an infectious disease doctor, since my pattern revealed that I would spike fevers weeks after the completion of an antibiotic cycle. We also discussed next steps to “fix” the last remaining issues with the abdominal surgery – repair of a fistula, hernia and some reconstruction of the external abdominal surface.

My primary care doctor reviewed everything, concurring with the plan. She changed up some medications. The infectious disease doctor changed the antibiotic and prescribed it for another month.

I was sick and tired of the fuzzy feeling caused by the narcotics and decided to wean myself off, since they didn’t seem to be effective any longer and I did not want to be reliant on ever-increasing doses. I weaned off them within two weeks and didn’t feel any worse than before. The fever subsided. I felt a lot better. The pain lessened, but it came and went. Eating seemed to hurt more and I was suspecting adhesions and scar tissue in my abdomen were causing much of the pain.

To be continued . . . . .

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Murphy’s Law: Part 2 of 8

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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Beginning Again: Part 1 of 8

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 9^th. 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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(Not) Just Another Blog Post About Gratitude

“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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Black (or Dark) Humor: A Survivor’s Guide

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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