People Connections Redux

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.

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.

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.

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 . . . . .

Next Stop – The Mastectomy and Reconstruction: Part 6 of 8

The second part of protecting against BRCA1 gene’s wrath is prophylactic mastectomy and reconstruction (optional, but for me, mandatory). Although I was still having severe pelvic pain, I was anxious to get the rest of this mess behind me. Besides, I was hurting and largely in bed anyway, so how much worse was this going to be?

I got medical clearance from my primary care doctor to proceed. Infections were under control (a definite must for breast implant placement). She and the surgeons (all 3) asked if I really wanted to proceed with surgery given my present problems and pain. I wanted to move forward and not have to worry about getting breast cancer too.

On June 3rd, the surgeons spent just 2 hours conducting the mastectomy AND reconstruction, with no complications. The surgical postop pain was very tolerable and the recuperation swift. Yet the pelvic/abdominal pain persisted.

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

Not So Fast: Part 5 of 8

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 . . . . . .

Goal: A Bite at Thanksgiving – Part 4 of 8

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 . . . . . .