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.
Posted in Challenges, Change, Depression, Emotions, Health, Personal growth, Writing | Leave a Comment »
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.
Posted in Challenges, Family, Gratitude, Health | Tagged Family, Maine, rest, risk, sons, Vacation | Leave a Comment »
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 . . . . .
Posted in Challenges, Health, Surgery | Tagged fistula, hernia, pain, pain management, spinal injections, weaning narcotics | Leave a Comment »
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. . . . . . . . .
Posted in Challenges, Surgery | Tagged BRCA1 gene, implants, Infection, pain, prophylactic mastectomy, reconstruction | Leave a Comment »
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 . . . . . .
Posted in Challenges, Depression, Emotions, Exercise, Fun, Husbands | Tagged beach, Depression, fever, hospitalizations, pain, recuperation, Vacation | Leave a Comment »
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 . . . . . .
Posted in Challenges, Emotions, Family, Gratitude | Tagged cousins, eating, Family, mastectomy, recovery, Surgery, Thanksgiving | Leave a Comment »
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 . . . . . .
Posted in Challenges, Exercise, Family, Food, Husbands | Tagged Going home, home care, nursing, nursing home, recuperation, rehabilitation | Leave a Comment »