I am still alive and functioning in Gales Ferry. And still quite gobsmacked over the length and breadth and depth of the pain and anger around my parents' deaths. We had an Episcopalian Memorial Service over Columbus Day Weekend in the Poconos. It was a beautiful, only slightly chilly Fall day, and we held it in an outside in an opening in the woods used for Quaker Meeting/Church Services. Both parents would have loved the place, the weather, and the company.
I was rather overwhelmed by the company. Present were my father's sister and her husband, and his sister, and my father's brother, and a couple of others all over 80, deaf, and yelling at each other, my brother, sister, myself, and a friend of mine who came along to help with the driving, all dancing around each other working hard at being polite, and three of my five nephews, working on drinking as much beer and wine as possible (two are of age, one isn't quite, yet).
I was rather overwhelmed, sipping my one polite drink in the midst of a hard drinking crowd, going outside to smoke just to put some distance between the multitude and myself. The best time was Sunday afternoon, when everybody but immediate family had departed, and I could let go enough to have a second drink and enjoy leftovers.
Clearly, I managed to survive with my polite smile pasted firmly on, but then came home and fell apart again. But I have taken my front garden of 6 years of weeds, dug up over 200 Giant Dutch irises, and if my tears have watered it more than I'd like, there is little to do about it.
And now on to the next big loss; J-Land. I have been here for nearly six years, and I am very sad to be leaving. But moving on I am. My new journal can be found at http://magogossmusingsachanginglife.blogspot.com/. I hope my readers will follow me over there, for I will miss those who don't.
Also, could you all send me your new addresses, even if you have already. I have been a little vague and missed a number of things going on around me!
Many Blessings to All, And With Love,
Sunday, October 26, 2008
Thursday, September 4, 2008
Traveling down some
old abandoned road
full of potholes and
looking for a sign,
a sign that says Hope.
throw me a rope!
Yesterday a neighbor who doesn't know me well told me how good I looked, and how well I was doing after my parents' deaths, and it must be nice to feel normal again, now that they'd been dead a couple of months.
I looked at her for a minute, while I ran her words through my head again. I was wearing an oversized, sweaty tee shirt, with shorts two sizes too big, knew I have deep dark circles under my eyes, and wanted to say, "You GD liar." I also wanted to say, "How the f*ck do you know how I'm doing." and "I can't even remember what normal is anymore." Instead, I said, "Thank you, have a nice walk." And walked around the corner of the house, just too tired for the briefest of conversations.
Some people just don't get it, and there is no point in trying to explain. Mourning does not stop six weeks after death. Mourning goes on as long as it goes on, and my pain and anger have not abated at all yet. I know they will, but in their own time, not mine.
Meanwhile I am so discombobulated that I knock into furniture, I drop and break glasses, I struggle with insomnia, I'm not reading my newspaper or watching television, I stare off into space a lot, I forget to eat, or eat too much, and I know all this is within normal limits and temporary.
And when the pain hits big time, I go out to the back steps and cry and cry and cry and moan and even yell. My neighbors are a little shaken by this, but I explained that for 58 years I held many emotions in, because my parents were the stiff upper lip type, and I did my best to be that way, too. Now, somehow I am freer to let go, to wail if I want, to sob and scream and carry on like a madwoman, when I need to.
I am doing many of the right things. I see a therapist weekly, I've been to Hospice to talk to a grief counselor, and have signed up for a six week course for adults who have lost a parent, starting September 15th. I don't, of course, have friends who I can call when I feel like cutting to let the pain out, or want to just get in my car and drive as far as my credit cards will let me (I do like to travel).
I am actually glad the summer is over-I didn't do any summer activities, like go to the beach, or swim in a pool. I have spent most of my energy the last couple of weeks by attempting to clear out a garden area that had been abandoned ten years ago-hard labor to tire me out, to fill my time.
Unfortunately, September brings my birthday, on next Thursday, the 11th. Not an particularly auspicious day, and one on which I will miss my mother enormously. She always sent the best cards, and her gifts, usually Native American jewelry, were always carefully picked to tickle my fancy. Even Meg is too broke to give me a gift this year. (They are fixing up their house to sell it and are truly struggling.)
On the other hand a friend is taking me out to play Bingo at Foxwoods, something I done only once before. It is a bizarre twilight zone experience to me, but it will get me out of the house, and only costs ten bucks.
I know you all are out there, but I'm having a hard time even reading journals, let alone IM'ing my pain across the Internet (I hate to IM more than a few sentences), Except, of course in random entries like this one.
I really do hope you are all doing well, and please know I am a strong woman and will eventually be all right.
PS Does anybody have Kas Ridiman's (of Hestia's School for Wild Young Women) new address or phone number? I really need to connect with her.
Thursday, August 7, 2008
"...somewhere behind all/ the lights and the wheels
you secretly hope/ that you might cut a deal
and all the bad Karma/will fall off your back
just like Elvis's Mom/in a Cadillac..."
I'm still here, struggling, finding myself enraged, filled to the brim with all the anger I politely held back all the days of my life. Somehow Mom's death, and Dad's, have lifted the veil and the old Karma rising-theirs and my own-has smashed me flat.
No deals, just acceptance and expression and holding in and letting go and red and black and crying and screaming and sobbing and silence and ignoring those who want explanations but are afraid to ask. Especially ignoring those who look away embarrassed when I well up and start to cry. Mostly I am overwhelmed.
And I cry over everything. Memories, things I'd like to tell her, all the times she told me not to be angry (stuff it, stuff it), how nobody dared cry over my Grandmother's death because Mom didn't (I'm sure she had her reasons, too), the fairy house she used to make for Meg in the woods in the Poconos, how her dying took away the glue that held my siblings and I together. I cry on rainy days and hot days and clear days. And how angry I am at her for dying.
I have barely looked at my Dad yet, where there are many fewer good memories and much more anger.
Days are okay-I try to keep busy-nights are horrible.
I am taking it as it comes, processing what I can, recognizing I'll be processing it for a long time, and in my own inimical fashion.
Thursday, July 24, 2008
I want to begin with a huge thank you to all who wrote me comments on my last entry. The overwhelming pouring in of support was truly amazing and helped make me feel much less alone. It is hard to express how much I appreciate the recognition that I am part of a caring and supportive community. It means more to me than any of you can know. I especially appreciate the words of my small world of regular readers-the whole experience still makes me cry-in a good way, of course.
I got home late Saturday, and managed to hold it together until I saw my new therapist on Monday. This time frame had been especially difficult because I moved from one therapist-Cathy-to another-Nicole-before I left for Meg's wedding. It seemed the right thing to do at the time, but I had had only one meeting with Nicole, and Cathy knew all the family dynamics, what my Mom's relationship was with me, how alienated I have been from my father all my life, all sorts of stuff about Catherine and Luke, my siblings, and how I have in my life with blow after blow, surgery after surgery.
I have talked to Cathy by phone twice, but have also said my farewells to her and committed to Nicole. I saw her Monday after oon and could finally let go. I've been a wreck since, but in a good, positive, accepting way. Mourning is so individual and I have never had so much to grieve over before, that I am trying to be gentle with myself and go with whatever comes up.
Nicole was very helpful in one way, by telling me it was OK not to talk with my siblings for a while- a really good idea. She was much less helpful when she told me to gather my all my friends around, at home and in person. I rather bitterly reminded her that my "presenting problem" was the lack of friends-my only three friends all work and have crazy busy lives of their own. They care, and call, but are completely unavailable during the long days I must spend alone.
I never realized how much of my life was spent telling my self, I'll have to tell Mom this. or Mom will laugh at that. I miss her terribly.
On the other hand, I will keep on keeping on, as I always do, because, after all, what other option is there? I'm not cleaning house or organizing my life at the moment, but am forgiving myself, knowing I will eventually.
Again, I must thank everyone who commented, who sent prayers or thoughts or energy, for all of it has helped as I move through this thing called grieving.
Blessings to all of you. Margo
Thursday, July 17, 2008
This morning, at 7:15 AM, my father, Allison Francis Page, died of C Diff, which had lead to a systemic infection that he was too weak to battle. We were told he was in serious condition but holding his own when we left the hospital at 6:00 PM, but at 11:00 PM the doctor called to say he had taken a turn for the worse, and we should come to see him ASAP.
I arrived from one direction, Luke and Mary from another. (Catherine ad returned to Michigan on Tuesday.) Allison was doing a little better with the massive amount of meds they were giving him, so we retired to the waiting room with pillows and blankets about 1:00 AM. At 3:00 the nurse woke us: he was doing much worse. We rushed down the hall to find him struggling to breath. I will spare you the next four hours, but I will say my brother was in strong denial, and wanted the treatments continued. It took 3 long hours before the nurse and a doctor convinced him the Allison was not going to tolerate more treatment, and they should be withdrawn so he could die in peace. He finally sad no more massive meds, just make him comfortable with lots of morphine.
Luke and Allison had a good father-son relationship, and Luke wept more than I've ever seen him, leaving periodically to sob somewhere else. Mary and I stood by Allison's bed for four hours, until he died, then I stayed with the body for a while, trying to figure out what had just happened. And why? I am sad because we were not close-at times I came close to hating him, other times he surprised me with his admiration and love. And he was my father and I loved him
I am quite shell shocked, as well as sleep deprived.. To lose both parents in four days seems excessive. I will wait until I home to even touch the pain and loss. Staying in their apartment makes me feel as if they might walk in any minute, and it's a way of both denial and holding them close, here in their home, which will soon disappear completely.
Catherine and I will have one last trip out here to divide the household goods, then I never want to set foot in Colorado again. I cannot wait to fly home Saturday, even though I am loath to leave. Confusing, isn't it?
I realize I am jealous that Luke lured them out here, and his kids got to have then at ball games and graduations. And I feel petty for being jealous. Every time I've been out here for the last 17 years I have spent my time driving mom to market or the hair dressers, or taking her shopping in stores that had nothing that fit me. (Though I must admit I have a couple of pieces of nice jewelry from shopping together.) And lately it has to visit them in that damned hospital, or to help out after a surgery.
It was only a vacation the two times we went to Taos, NM. And she apologized to me that we never made the last promised trip there the day before she died. I told her I would go for us, knowing quite well that it is beyond my means.
I am beyond tired now, and will end this to go to sleep. I feel as if the last forever postings have been more and more depressive, and I thank you for hanging in as I struggle on this next part of my journey.
Many Blessings, Margo
Wednesday, July 16, 2008
I am sitting here in my mother's bedroom, sipping some Gray Goose, thinking, "Sh't, some years it's not getting out of bed on New Year's Morning, even if I did go to bed at 9:00 PM the night before."
The Wednesday before Mom died, I went to the rehab center to visit Dad, who is there because he had spent several weeks in the hospital and nursing homes, and needed to get his strength and stamina back before he could return to his apartment in this retirement community. He was glad to see me, and bragged about walking 100 yards with minimal help that morning, when three days before he could barely stand up.
Friday he felt very tired, but still did physical therapy. Saturday he spiked a temp and began having diarrhea more than usual. Sunday, when Luke and Mary went over to tell him Mom had died, he seemed quite sad (appropriate after 60 years of marriage!) and a bit weaker than the day before. Monday he declined to go to Mom's Memorial Service, and when we all went in, he looked both depressed and sicker. Tuesday he was back up doing physical therapy in the morning when I saw him, but was sick again when Luke and Mary dropped by later.
Tuesday night Luke got a call saying he was sicker still, but refusing to go to the hospital. Luke, Mary and I arrived back at the nursing home, to find him really sick, having frequent diarrhea, and in pain, still adamantly refusing to go to the hospital. We stayed until midnight, then left, planning to go in early this morning.
Hey, none of us blamed him for refusing to return to the hospital. He was there in May with a blood infection and back for most of June with C Diff, an intestinal bug usually picked up in hospitals. It is highly contagious, extremely insidious, inflaming the colon, and most likely to affect the elderly and those with compromised immune systems. He falls into both categories. I will refrain from describing too much about C Diff, because if you are interested you can Google it. ( And if you have an elderly and/or immune compromised relative in a nursing home or hospital, I recommend that you do.)
And yesterday, he was diagnosed as having C Diff again. It is insidious because it can come return and return and return, each time worse than before, causing more pain, worse symptoms, and can lead to death.
This morning at 8:00AM Luke called to say he had just hear from Life Care of Littleton that Allison (yes, my father's name is Allison, and we often call him by his first name) had had such a bad night that he had requested to go to the hospital. Now, this is the same hospital that Catherine and I left three days before rejoicing that we would not have to return to, maybe forever. The same one at which he and Mother had just celebrated their 60th Anniversary, since they were there at the same time, the same one they had said good-bye to each other one week ago.
We found him in the ER looking awful. I will not go into long detail, but eventually he was sent to ICU, where he is in isolation with terrible colitis, in a lot of pain, finally getting meds. Not, however pain meds, because his blood pressure was so low. When I left he was getting a pic line put in, so they could deliver meds and draw blood easier.
I don't think he is going to die at this point, but it is becoming clearer that he may never fully recover, especially since the C Diff returned so quickly and virulently in such a short time. He is determined to fight it, completely plans to rehab and come home, but one of the doctors we talked to today said this was very unlikely, and we had to begin to face reality and start thinking about long term care. Of course, she does not know how stubborn he is-stubborn to the extreme all his life-but who knows where reality will lie?
I am feeling triple whammied, and more. After spending the winter and spring inside, healing from surgery, I was barely able to make it to Meg's wedding, a joyous event, but physically difficult for me. I was home two full days before I had to drop everything and fly to Denver for Mother's death, and now Allison is critically ill.
I am still flying home Saturday, unless Allison suddenly takes a turn for the worse. This is unlikely, but it is possible that he will never return to this beautiful apartment in the retirement community that they moved into last October, and that just breaks my heart.
I am beginning to wonder when thing will finally start getting better. Not just for Allison and my brother Luke who lives out her, but for me as well. No, of course I am not giving up. I'll go home and back into my own rehab (I have now been in physical therapy for the better part of six years!) and occasional walks with Meg and Myla, and whatever else I can scrape up to keep moving forward. I will probably have left shoulder surgery in the late fall or winter, then figure out what to do to keep me busy for the rest of my retirement. And I will stay away from hospitals as much as possible!
Today has been another hard one, but tomorrow I will get up and go over to the hospital (I have the early shift) and put a smile on my face while I gird my loins to be an active advocate for my father, because I believe everyone should have one full time when they are hospitalized. Friday I will do the same, and Saturday I will fly home to collapse for a while.
I truly, truly hope that you all are having good summers, and that sometime in the not too distant future I can catch up with you all.
Monday, July 14, 2008
My mother, Margaret Barbara Brettun Lucas Page, universally known as Peggy, died Sunday, July 13th, at 7:30 AM. It was a good death and my sister Catherine and I were there with her, laying our hands on her to commend her Spirit to the next world as she quietly took her last breath.
She was a strong and lucky woman. She decided Tuesday morning that she did not want a feeding tube or a machine breathing for her, and all around her could see that she was lucid, understanding exactly whet the consequences of her decision would be, and ready to move from this life to the next. Hospice was called, and all their paperwork filled out, and Goddess Bless them for their help. During the next five days she was able to visit once with my Dad, who is in a rehab center, and a lot with her three children, three of her five grandchildren and her great grandchild (Meg's daughter, Myla, now two). We all got chances to visit with her alone, to say how much we loved her, to say our good-byes.
She was actually really happy- no more blood draws or intrusive medical procedures, just family hanging out, laughing with her, listening to her stories, with plenty of morphine to take away the pain, and she could eat anything she wanted, including chocolate milkshakes, corn candy, and custard. She even got to have one last Bloody Mary. Though she only took a few sips of it, she was pleased as Punch. Each day she ate less and less, still feeling joyfully rebellious because she had been a diabetic for so long.
By Sunday she was completely ready to have her life end. She was slowly lowered from 100% oxygen to about 10%, and slipped into unconsciousness. Her morphine was raised to some astronomical amount, and she began getting regular large doses of Atavan. Her breathing became labored for a while, then settled into the kind of loud snoring I have heard from her a hundred times, not labored or odd sounding at all.
My sister Catherine and I spent the night in her room, waking in time to lay our hands on her as she quietly took one last breath, quietly breathing it out, then became still. Each of us sent her on her way silently, Catherine to a Christian heaven, and I to the arms of the Great Mother, where she can feel unconditional love for the first time. We stood together holding her hand and Shorty (her stump, she only had one arm) for a long time, crying quietly. I suggested we say the 23rd Psalm, and we did, then we called the nurse, and out brother Luke, who could not stay the night, or even in her room for more than a few minutes as she was weaned off oxygen.
Nurses and chaplains and PA's turned up in short order to confirm her death, and Luke and his wonderful wife Mary arrived 30 minutes later (I cannot imagine how many speeding violations the committed to arrive so quickly.) Luke was able to stay in the room with her cooling body about 15 minutes before he had to leave to become busy with the inevitable paperwork-his way of coping is to be as busy as possible. Catherine and I hung out with Mom for another two hours, holding her and each other, knowing that she had passed on to the Great Unknown, her next adventure. Each of us knew that when we left the room she would be much more concretely gone.
Finally we gathered together her stuff, and our own, and left the room, telling the nurses that they could clean her body up for transport. She has donated her body to the local Medical School, for dissection, her last gift to this world.
We gathered for pizza that evening at Luke and Mary's, a real trial for me, for we are a disconnected family which has been held together by Mom, who loved each of us so dearly. I felt especially disconnected because Luke has Mary, Catherine has Bob, and I will go through the mourning period essentially alone.
This afternoon we had a Memorial Service at Dad's Rehab Center (he had been in the hospital for a month, and will need several weeks of physical therapy before he returns home to their apartment, where I am staying). He was optimistic and pleased with working hard when I saw him on Wednesday, then he spiked a fever, and fell into depression. He has been sleeping a lot, and declined to come to the Service.
Led by a wonderful Pastor named Jordana from the hospital, the Service was wonderfully non-denominational, with time for people to share reminisces, laughter and stories about Mom. Catherine read a Psalm, then I was blessed to give a prayer I had written to the Great Mother, praying (among other things) that as we revisit and reabsorb our relationship with Mother, we may work through our pain and loss to find a thoughtful, healthy healing, as a way of honoring her life and Spirit.
Then we said The Lord's Prayer, and it was over. We had lemonade and cookies as a kind of ending reception, visited Dad very briefly, then split into go our separate ways, Luke and Mary back to Lakewood, Catherine and Bob back to Michigan, her sons back to their summer jobs in Michigan and Connecticut. I will probably return home over the weekend, knowing that leaving their apartment will be one more step in letting go. We all know that the glue that held the family together is gone.
Family relations have been extremely difficult, each of us returning to our childish selves, even as we struggled to be polite and fair and sustain the illusion of family unity, but that is for another post, and will take me a long time to work through.
Thank you all for your prayers and thoughts. They mean a great deal to me, making me feel less alone in my life.
Many Blessings, Margo
Tuesday, July 8, 2008
Too much is happening all at once. I arrived back from Nova Scotia and Meg's wedding Saturday night about 11:30 PM. The wedding was beautiful, despite the fog, and took place outside beside the ocean. Meg looked beautiful in her white (pregnancy) gown. simple high waisted, beaded on the bodice and back, with flowers in her hair, and bare footed-since the dress was a tad too short, and she has no dress shoes anyway!
Myla was in a long white dress, too, running back and forth between her parents and Geoff (Meg's dad) me and Nana (Adam's mom), free and happy and unconstrained.
Adam looked handsome-and slightly awkward-in his tux, until Meg appeared, walking down the "aisle of trees" with her father and Myla, then he looked dazed and proud. He had absolutely never seen her looking so "girly" before and was dazzled.
There were 10 guests (counting Myla) and the dinner afterwards was beyond description. Let me just say, I have not eaten food like that in 20 years. And the Gray Goose Vodka was good, too! Pictures will follow eventually.
Last night Luke (my brother who lives in Denver, and got back from the wedding on Saturday, too) called to say Mom was not doing well, in ICU with pneumonia, on antibiotics and not responding well. This morning he called to say that she has refused all heroic means, food, and medicine. I am flying out tomorrow at 6 AM, my sister Catherine arrives at 9:30 PM, and Meg and Myla will fly in on Thursday. My father, who has been in the hospital for weeks, is now in a rehab facility, will be carted over for at least a while each day.
We don't know how long it will take her to die, but are all hoping sooner rather than later. There will be no funeral-she is giving her body to DU Med School-and any memorial service is likely to take place later this summer, or even next summer in the Poconos.
We kids are all responding in our own irritating (to each other) fashion-Catherine, in the middle of a major med change, has withdrawn and will do her mourning in a safer place than the bosom of the family, Luke is telling us all we MUST be strong (like him) and not break down at all, and I am weeping, and will continue to, except in front of mom, if it upsets her. She, in her inimical fashion, is pissed we are all coming-but will be glad to see us if she is coherent enough to know we're there.
And who knows about my father, stuck in a nursing home, still recovering from a month or more in the hospital. They were both there for their 60th Anniversary last month, and the nurses got them a cake. They held hands and smiled. They have not lived together since February when mom had back surgery. Since then one or the other or both have been hospitalized, in rehab, or home alone.
Aging sucks and the American way of dying is much, much worse. I will take my laptop with me, but have not always had good luck connecting there, so may be incommucado for a while. I want very badly to return to reading about your lives, my friends, and eventually will make it home and back to J-Land. I will be glad for your thoughts, prayers, meditations, whatever it is that connects you to your higher power, asking for a kind death for mom, and encouragement for all of us left behind.
Saturday, June 21, 2008
Yes, I am still alive. I have made it through a winter of suffering, both physically and emotionally. I simply have not had the energy to read many journals or write at all. Now that Summer Solstice is here, I think I can see the light at the end of the tunnel. I just hope it's not another freight train hurtling down the track at me.
The surgical wound from my second surgery this winter/spring has almost-almost, mind you- healed up. I'm down to one small spot that can be covered by folded gauze and one piece of tape, I have been driving locally for three weeks, and the Visiting Nurses discharged me this last Monday. I was house bound from February till early June, and now I am moving into a summer of physical rehab.
It is difficult to believe that I have been in p.t. almost continually for five years now. I am more than a bit surprised at my own tenacity. I have been admired by those who know the whole medical saga-like my former therapist Cathy and some of you- for my courage, and I'll claim every bit of that courage. But, honestly, what else can I do but keep on staggering forwards into life as it is given to me?
Giving up turns out not to be an option. At one point I was at Yale New haven hospital, late at night, bleeding very heavily from two place in my side-something my doctor's residents did not seem to believe. The nurses were horrified, and kept taking the doctor's light bandages off to replace them with compression bandages, which I was bleeding through at a slower rate. The floor was crazy; that night one patient died, four were in critical condition, I was bleeding out, and the floor was short staffed (as usual).
I finally realized that I was going to have to be a squeaky wheel to survive the night, demanding more compression bandages every 2 hours. I actually considered going to sleep and just see if I would wake up in the morning, but nooo, my mind wouldn't let me sleep, so I kept ringing and getting blood transfusions (two that night, two more the next day, then a couple more the day after). That was when I realized that apparently I was damned to live through anything. And somewhat determined, too
Before summer really hits, I am going to Halifax, Nova Scotia, Canada for Meg and Adam's wedding, which is on June 30th. I am flying up this Thursday, spending three nights at a local college( for $45 per night!), then moving to the Oceanstone Inn and Resort, where they will get married, for three days (at very expensive a night), then going back to the college for three more nights. I'll fly home July 5th. If I don't end up flying from there to Denver-more about that later.
I figure this will be my last time in the Canadian Maritimes, and I better grab what vacation I can. I am not very strong-I've spent the last three months in my chair, working hard on healing, but I still aim to stagger around Halifax with my walker, trying hard to take in as much as I can.
The Wedding itself will be typically Meg, with a bit of Adam thrown in. There should be twelve of us, counting the bride and groom and Myla (who just turned two, and is wonderful!). They plan to wed outside in the afternoon by the ocean, with all of us in a semicircle around them, then disappear with the extremely expensive photographer, for pictures by lighthouses and other picturesque sites around Peggy's Cove, while we go out in a small boat for a tour.
We will return for a fancy dinner in the apparently incredible restaurant, and there will be no wedding cake-they have chosen raspberry flan for dessert. Then we will retire down to the fire pit for a bit more time together, but must be quiet by 10:30P.M. as it is a family resort. I am sure I'll be dead of exhaustion by then, but, damn it, I only have one child and do not want to miss any of the day! Oh, and did I mention the bride will be six months pregnant with another couple's baby? She is in the middle of a gestational surrogacy, and is not letting that slow her down!
The sad thing is that the wedding party may be cut by two. My brother Luke and his wife Mary are in the Poconos (of PA) to open our cabin there for renters, and were planning to drive to Canada for the wedding. Meg and I were both excited to spend some time with them, but now it looks as if them may drive straight back to Denver from PA, because my parents are failing fast. Right now, both of them are hospitalized.
Mom had back surgery in February and has been bouncing back and forth between hospital and rehab since then. She finally went home late last week, and Allison (my dad) was hospitalized two days later. She lasted 5 days at home without him-quite happily-then had to return to the hospital because her magnesium was too low. It bounces between too low and two high and lands her back there each time. Allison has a stomach problem and emphysema, which is worsening.
Poor Luke and Mary are the family in Denver, and used to being on the spot and in the know. It is driving Luke crazy not to be there, and he suddenly had an "ah ha!" moment about how Catherine and I feel stuck in Michigan and CT respectively. They have not yet decided on what to do-head back to Denver or on to Canada, but my suspicion is the will head home soon.
I am not taking a computer to Canada, so I will be incommunicado for a while, but I miss reading all of your journals regularly, and knowing what is going on in all of your lives. I drop in now and then, though, and think of you all often.
Sunday, April 13, 2008
Yes, I have been out of it again. My original surgery was Feb. 28, '08, and that same day surgery turned out to be four days at Yale-New Haven Hospital. My "bleeding out" complication began March 13, and I was at Yale 5 days that time. I should have had surgery to open it up then, but my surgeon sees people all Friday and obviously didn't want to disrupt his schedule-or his weekend-with a complications surgery, so he decided to have his residents keep packing the wounds and sent me home. Within a day or two
Over the next few days, the holes through which I was supposed to be draining got larger, and continued to pass red blood, so I called my primary care physician (who I had met once only). She looked at it and referred me to a local surgeon, since by then I was clear I was NOT going back to Dr. T. in New Haven. I met the new, local surgeon at 4:30 Friday afternoon, and by 5:30 I was checking into L&M (our local hospital), scheduled for surgery the next morning!
I like doctors who are willing to treat aggressively, if I ask them to! This surgery was really debriedment, the stripping off of skin and infection, leaving me with a large hole in my right side, in front of my hipbone. And I do mean large-about 7 inches by 2 1/2 inches and fairly deep, too, with a 3 inch tunnel which runs under the skin towards my belly button.
I came home Sunday, and went back into the same routine of having a Visiting Nurse in daily to pack the wound. After a week, my wound vac arrived. You can Google it if you are really interested, but briefly, it is a two part system. The first part is fitted to the wound and sealed. The second part is a machine from which one side plugs in to an outlet and the other side into the sealed wound, causing negative pressure. It sucks the pink liquid out, and helps the wound heal quicker. Like in two months, as opposed to eight months if I'd stuck with Dr. T'homson's regime.
Am I angry? You betcha. I am enraged at Dr. T's treatment of me when I went back to Yale in mid March. I even suggested surgery several times to his residents, but they blew me off, as they did when I said I had a second tunnel. Eventually, when I am feeling better, I will write a stiff letter to Dr. Thomson, with copies to the head of surgery at Yale, and to Dr. Bell, my gastroenterologist, who recommended him.
Meanwhile, I am into my third month of being homebound, and feeling pretty much as if I am starting all over again at the beginning. Winter has gone, spring is busting out all over (to coin a phrase) and I am not supposed to leave the house without a minder because I am so weak-from surgeries, blood loss, lack of exercise, etc. I have been out (alone) to see my daffodils and little blue star flowers and crocuses, but there will be no working in the yard this year, alas.
Lonely? Sorry for myself? Yup, definitely, due to too many days spent alone, stuck in the house. I am tired of TV and reading and eating the same food over and over (luckily I froze a lot ahead of time). I know that this too shall pass. My wound van will have me healed in another month or two, and I will actually be looking forward to my former life of physical therapy, regular therapy, doctors' appointments and walks around the neighborhood.
I will certainly survive. I always do, no matter what life throws at me. I can hardly believe that I am writing this, but I am already beginning to think about whether to have my next surgery-on my left shoulder, and absolutely necessary in the long run-in the autumn, or wait for winter! Such is life. It just keeps going, and I have to go with it.
Wednesday, March 26, 2008
I have spent the last week and a half dealing with, and meditating on, the "small problems" which sometimes accompany surgery. I had one (a small problem) a week and a half ago that sent me by ambulance first to my local hospital, then later in the day, again by ambulance, to Yale new-Haven Hospital where I had my original surgery done Feb 28th.
I had figured I'd already had my "small problem" when same day surgery turned into a four day stay in the hospital, with the addition of four units of blood transfusion. (And, thank you, one and all, who donate blood. I really do appreciate "the gift of life.") I had returned home, lived carefully through the next week or so, had my two week check up with Dr. God, the plastic surgeon, and returned home exhausted but thinking I was healing.
(Now if you are really squeamish about blood and gore, either skip or skim the rest of this.)
The next day I woke up in a large pool of my own blood and gore. Luckily the Visiting Nurse was due soon, so I sat, keeping pressure on both sides of my wound until she arrived. And quietly panicked, even while she efficiently took over. She cleaned me up, put pressure bandages on me, called the ambulance and promised to put out extra food for Roxy as they wheeled me away.
Emergency Rooms are very boring-hurry up and wait alone-and I had not had the wherewith of mind to grab a book. Four hours later the ER doc at my local hospital told me the obvious-I needed to go to Yale-and eventually another ambulance came to take me away. I was still bleeding, but quite well bandaged by then, thanks to a passing nurse. Yale ER is much crazier than my local hospital. I waited 2 hours for their ER doc, even though my surgeon's residents knew I had arrived. They turned up two hours after the ER doc and gave me the lie that "this is just one form of a normal problem, don't worry, it'll stop by tomorrow morning" then disappeared, after sticking gloved fingers into the three holes out of which I was bleeding. Two hours after that I finally got the pain med the ER doc had ordered, and was moved out into the hall to wait for a room.
I was actually one of the lucky ones because an hour later a bed opened on the surgical ward, and they put my name on it. By the time I was wheeled up to it, the hospital was full, leaving many others to spend the night down in the ER. Unfortunately, I arrived at the change of shift, so I spent two more hours, lying in my own blood and clots, desperately needing a bedpan. Help finally arrived at 1:00 AM, in the form of a horrified nurse, who cleaned me up, called for the on-call doc, demanded something be done, and (when told this was a variation of normal and they wanted me to pass the clots) said (to me) no way was this normal, nor was I going to bleed out on her time. She put on pressure dressings (not what the resident doc had wanted), and handed me heavy pain meds. Bless her, her name was Melissa, and I am deeply grateful to her.
The next morning, the whole pantheon of residents and interns and hangers-on appeared at my bedside to reiterate the lie, this is all part of normal, as they again tried to pull clots out my holes with gloved fingers. I needed to be lightly dressed to draw the clots out, they said, not to worry they had it all in hand...while I, going on no sleep at all, tried to form intelligent questions about all the blood I was losing along with the blood clots. They hushed me, placating me until I felt stupid, and left while I was still trying to explain about the amount of blood I was losing.
Twenty minutes later, it was clear their light dressing were not a good solution, for once again I was passing a huge amount of bright red blood along with gigantic clots. Luckily, I am not squeamish. I rang for my (new) nurse, demanding that she call them back. She freaked a bit at the amount I'd bled in 20 minutes, cleaned me up, called them back, then left the room to have a heated argument outside my door, explaining that at the very least I'd need two units of blood to make up for what I'd just lost. Two residents returned half an hour later, when I had once again bled through the pressure bandages, and the chief resident said, quietly, "Oh, I didn't realize it was bleeding this much, this isn't normal at all, in fact it's almost unheard of for someone to bleed two full weeks after surgery." This out of the mouth that had been assuring me (lying to me) about "variations of normal" for 15 hours!
I was enraged, and said so. Four units of transfused blood and nearly eight hours later, the word came down from on high (my surgeon, Dr. God, who did not put in an appearance until three days later) that they would not do surgery, hoping that packing me would staunch the bleeding, but not stop the clots, which needed to drain out. That was Friday morning.
By Monday I was threatening to die of terminal boredom, so they sent me home Tuesday, feeling as weak as I did when they sent me home the first time. I did manage to keep a happy front up to Meg, and all the rest of the family because my mother, poor woman, was back in the hospital in Littleton, CO, due to "confusion caused by her meds" and uncontrollable diarrhea. She ended up having back surgery the day I came home, to fix a couple of her ruptured discs, in hopes this might help with her other problems. The family has been all riled up over her situation, so I downplayed mine.
And, indeed, mine is no longer acute. I have a visiting nurse come daily to put in a drain in one bad hole (I can do a lot of medical things to myself and others, but simply cannot use a sterile Q-tip thingy to stick a couple of inches of gauze drain into a hole in my side) Today I go back to Dr. God, who will look down his patrician nose at me as assure me (as he did the day before I started bleeding) that all is well, and I am on my way towards healing.
Yeah, in rereading this, I can see how angry I was, and still am, although it has dissipated some with time and less pain. I am no less susceptible to post-surgical problems than anyone else, but part of my rage was at their inability to understand that I was really in trouble, though several nurses backed my story up. These residents and interns will soon be out there as full fledged doctors, not listening to their own patients. And Dr. God only got second hand reports during the time I was really bleeding. He turned up the day before I left to inform me they had it all under control now. (Duh, I could have told him that.)
I did have several wonderful nurses, who took on the docs for me, demanding they get back up to see me, right now!, and others who just took really good care of me. My first 18 hours there were pretty scary; I was discounted and placated and lied to and ignored (nobody should lie bleeding heavily for two hours, despite speaking twice to a nurse and ringing the bell several times, and I did make a formal complaint about it). The scary thing is that we have one of the best medical systems in the world, and I am grateful to live here. I am also thankful to have good insurance and a fair amount of "consumer savvy" due to the number of surgeries I've had. (Too many!)
Whine, whine, piss, piss, moan, moan. I actually am quite grateful to be through the worst of all this, and though I am still exhausted and in pain, I am beginning to perk up and take a small bit of interest in the world of J-Land again. I'll be around a bit more, and am looking forward to reading journals again.
Sunday, March 2, 2008
Thank you, everyone, for your care, concern and blanket of love. I went into surgery more relaxed than ever before. I had every confidence in my choice of surgery, the surgeon, the hospital and my own preparation, which included all of you who were so kind to wrap me in that blanket of love in whatever way seemed right for you. Damned good thing!
The surgery was, indeed a success, but not an easy one. They carved out eight pounds of skin and trapped fat, took out Meg's C-section scar, found and fixed a small hernia at the bottom of my pouch, and generally marched through my abdomen like the Calvary coming to my rescue. Alas, there was a bit of collateral damaged. I lost over 800 cc of blood, took forever to come out of anesthesia, had blood pressure that kept threatening to bottom out, and ended up with four units of blood over two days.
So I got to spend an extra day or two at Yale/New Haven Hospital, miserable, but healing well, and finally made it home early this evening. Yes, despite the unexpected setbacks, I am well enough to be home alone four days after surgery.
I will write again later this week, when I have recovered a bit more. Meanwhile, Thanks again, everyone, I truly did feel peaceful and blessed as I lay on a gurney, wrapped in a powerful blanket of love.
Blessings to all,
Wednesday, February 27, 2008
This afternoon I FINALLY heard from Yale-New Have Hospital, about the time to arrive for my abdominoplasty. Robin and I are to arrive at 6:30 AM, which means the surgery is probably scheduled for 7:30 or 8:00 AM. I am going to ask if you will wrap me in a blanket of sky-blue love from, say, 7:17 to 7:45 AM EST.
I am as ready for this surgery as I'll ever be-soon I am going over to Meg's so she can(reluctantly) take some before pictures. She's not thrilled because of -euww-seeing her mother half naked, but I told her if she could take dead bodies out of cars as a firefighter, surely she could click a half a doze pics of me in bra and panties!
And I get to see Myla again, too, O Happy Day!
I still have a lot of organizing to do. I always pack a book, though I know it will be weeks before I read and retain info again. I've got three pairs of night garments because I don't know exactly how the drains will work. I have a list of people to call and e-mail
I am very grateful to Robin, who is a massage therapist in the Cancer Center in our local hospital. I know she will be the best advocate I could have, so I don't have to hold it together on my own.
And give thanks for all of you who have promised to pray, meditate, etc., holding me in my sky-blue blanket of love so I can let go and go with the flow of the surgery and the beginning of healing afterwards.
Blessings to all of you, Margo
Saturday, February 23, 2008
As February draws to an end, we finally begin to get more winter weather. I'm not sure which goddess is in charge of weather. I think perhaps Demeter, because she caused permanent winter when mourning for her daughter Persephone, kidnapped into the underworld. All I know is that I could wring her neck, as we are in the middle of a typical storm.
Of course I choose to live in South Eastern, CT. Our winter storms tend to be the snow, sleet, rain, then when night falls everything freezes over. Finally, it is likely to snow some more, so the roads look just snowy, but have glare ice underneath. Now, I have always worked jobs in medical facilities that never closed, so I got pretty good at leaving early and driving slowly and carefully. These days I seem to be retired, so why should I care?
Usually I don't, but yesterday I had two vitally important doctors' appointments-vital for the surgery. Without them, there will be no surgery. One was the second half of a stress test, required by my cardiologist. The other was an appointment with my new PCP, required by my surgeon. Both canceled me at by 7:30 yesterday morning. I am blessed in some ways because each was able to get me in on Monday, after I freaked and explained my situation, but I am cutting it REALLY close.
I do not seem to be worried about the surgery, or its aftermath, but I am doing a lot of totally unnecessary free floating anxiety about what I need to do between now and Thursday. I had scheduled my appointments much earlier in the month, but because of storm, doctor's sick children, and scheduling mix-ups, too much has come down to the last week or so. Of course, I do know it's all my control issues rising up to grab me by the head to throw me off balance. And perhaps some unconsciously denied anxiety about the surgery itself.
Now that I have written this down, perhaps I can work onchanging my thinking. After all, I do know the only thing I have control over is myself, what I choose to do and think. And Demeter, like all archetypes, is not interested in me or any individual, just is creating her own pattern of energy. Who can control the gods and goddesses, anyway? (Actually, now that I think about it, lots of religions seem to try, from the Hindus marching their statues down the streets on festival days to the Catholics who ask intercession by Virgin Mother-another archetype- to the Buddhist who does good deeds to improve his karma, to me with my little altars and shrines all around my house.)
So yesterday, I let it all go, using one of Peggy Huddleston's suggestions (She is the developer of the Prepare for Surgery and Heal Better that I am using.) Her suggestion is to take 30 seconds and go to your "place of relaxation" in your head-any place that is relaxing for you- and get away from the worry. I go to a hammock by the Tobyhanna River in the Poconos. When I return, I've got a better handle on the unimportance of whatever anxiety I have. Thank Goddess, it works for me. I just have to remember to do it more!
It is difficult to look at how much I let myself suffer, when I have tools that work to change the situations that make me crazy. But I am learning.
Wednesday, February 13, 2008
I am writing this entry to ask for help, something I am still learning to do in my life. I will get to what I need shortly, but first I'd like to catch up.
January was a reasonably slow month, mostly spent fighting my own doctor's office and workers comp for physical therapy, with a few assorted appointments thrown in for "excitement." February has taken off like a rocket and I am now lock stepped into a race with time as I count down to surgery on February 28. I have had to fight with most of the doctors' offices to squeeze me in, because I need their OK's for the surgery. This process is always necessary and always exhausting.
Then I have to force myself to actually get to each place at the appointed time. Between now and then I have appointments with my pain treatment specialist, my cardiologist, my surgeon, a brand new personal care physician, my therapist, three appointments with my physical therapist, and three with my personal trainer. I'm exhausted just contemplating all this! Each doctor's appointment is stressful, especially meeting my new PCP and saying, "Hi, you don't know me, but please clear me for surgery!"
And, of course, there is the surgery itself. I have chosen-and fought the system-to have an abdominoplasty. This is essentially a very extensive tummy tuck. Since I lost the 220 pounds, I have been left with literally pounds and pounds of hanging skin and fat, which cannot be exercised or dieted away. Every time I get out of the shower and see myself in the mirror I smile wryly and think of the Elder Statesman in the Babar series-I am wrinkled from my breasts to below my knees!
Of course I know I am lucky to be here, healthy enough to look in the mirror at all, and the point of the gastric bypass was health, not beauty. Butone does end up with a new kind of deformed body and new medical problems-rashes and infections where the skin hangs down. Hence the need for an abdominoplasty.
(Skip the following if you are not interested in specifics) The surgeon at Yale/New Have Hospital will make a roughly X shaped cut from below my breasts to above my pubic mound, cut and tighten my stomach muscles, slice off hunks of skin and fat, then stretch the remaining flesh back together and staple it into a long scar around my waist. I'll end up with drains, pain and a couple of months of healing and exercises on my part to rehab.
Now you would think after all the surgery I've had-one biggy a year for the last four years, eleven since 1994-I would not get nervous anymore. Not true, of course. I seem to get more scared each time. I'm not worried about the general anesthesia (if I die, then my time was up, and I'll go on to somewhere or nowhere; I have no control over that) or even of the surgery itself. What I am scared about is the pain afterwards. I have found that any surgery cranks up my normal level of chronic pain, and it can be months before it settles back down to a dull roar. This fear inevitably gets in the way of facing surgery calmly and resolutely.
So this time I am using Peggy Huddleston's "Prepare for Surgery and Heal Better " program. This consists of an hour's one--on-one workshop containing guided imagery for deep relaxation and three end results that you choose to enable you to move back to full health easier and faster after the surgery. It works on the principle that a truly relaxed patient is a better patient, and she has tons of medical research to back her up on this. I have had the training given by Peggy, and am authorized to give the workshop myself, which can even be given over the phone. (If anyone is facing surgery, all you need is to buy the book and CD, and I can give you the workshop free, over the phone, as it is one way I am volunteering these days.The book and CD cost about $30.00)
A friend led me through the workshop, and I have been listening to the relaxation CD regularly, in preparation, and this is where I need all the help I can get. I need at least 20 people to wrap me in sky blue blanket of love in the half hour before surgery. You can do this with prayer or meditation or picturing me or sending it out across the universe, whatever feels right to you. And then in the first few days after the surgery, you can also hold me up for easy healing whenever you think of me. If you are involved in a prayer group or meditation circle or spiritual meeting, please spread the word. I welcome all denominations, all faiths, anyway one connects with the Light.
I do not yet know what time my surgery will be yet, and probably won't until the day before. I'll make an entry as soon as I know so you'll know when to send the love to me. (I know this is a hardship for those who live on the West Coast or out of my time zone, but as long as I am asking for help, I might as well do it big time!) Again the surgery is Thursday, Feb. 28.
Phew! I did it. Asking for help is never as difficult as I think it will be, and I am getting better and better about it.
Monday, January 28, 2008
"Where the Hell are you?" asks my friend Anne.
Alive and well and back in Gales Ferry. It took me a while to process all the experiences of my Road Trip. The short version is that I realized that I am still capable of traveling on my own, slowly, but nevertheless happily. This was a great relief, because traveling is something I love to do. I also discovered that my aloneness (as opposed to loneliness) is not my "fault" -those who knew me from my journal welcomed me wonderfully, treating me like an old friend, or new family member. I appreciate their love (and indeed everyone who reads my journal's love) more than I can say. I realized my aloneness is a matter of life events, over which I have had little control. And I found that I am quite happy to be off by myself, exploring not only the world, but my own response to it.
Then I came home and recognized that this is my life. In some way I have been waiting to "get through" this surgery or that rehab for a new life to start. Wrong. My new life started August 7, 2003, (the day I fell at work), took a left turn when Rene moved out, and continues daily. It's not the life I would have chosen, but it is the life I have. I have been sad about this, but have not found myself standing motionless beside Hecate in the depths of the earth. I have simply kept getting up each day and continued moving, sad or not.
And, after some struggle, I decided to have an abdomialplasty yet another major surgery. The idea of yet another operation does not thrill me-I have had four biggies in the last five years, and face shoulder surgery-this time on the left-come summer. But I saw the surgeon, gathered the proof of necessity for insurance (which turned me down last time), and let it go over Christmas. I figured it would happen or not. And I was accepted this time. This will require a lot of organization, preparation and more courage than I really want to put out. I am, however, determined to do this surgery smarter and better, preparing better and asking for more help than in the past.
Then I spent 3 weeks at Christmas in Colorado with my parents, a bittersweet experience, for I realize I am mother's main emotional support. They have moved from their duplex into a very good, very expensive retirement community. Unfortunately, they are not really taking advantage of most of the wonderful opportunities the place offers. My father happily tootles off the Dining Room every evening, where he has the choice of five entrees. My mother orders hers in, where she happily dines alone. The main reason? She is so deaf, even with 2 hearing aides, that sitting at a table with strangers is torture. He doesn't understand her isolation, or particularly care.
My father, 85 next month, still claims he is in charge of their health-as he is because he has to drive her to each doctor's appointment. She hasn't driven since her brain and eye surgery in April, because the eye runs in bright light (and Colorado is full of relentless sunlight). I suspect she'll never drive again. My father should not be driving at all, plus he goes into all her appointments, gets impatient with translating for my mother (who can't hear what the doctor is actually saying) and announces that he'll tell her later-then forgets what the doctor had said, leaving her in the dark.
And her med. situation scares me to death. Halfway through the visit she gave me one small pill and asked me to go to the drugstore and renew the prescription. She wasn't sure what the pill was, what it was for, just that she took one every night. Or was it morning? Well, most days, because she thought it was a diuretic, and she didn't take it when she has a lot of diarrhea (a side effect of her cancer 4 years ago). And she didn't have the bottle because she empties all her pills into a box with small dividers with scribbled names. Her hand doesn't work well (she has overused it for 70 years, since her left arm was amputated) and pills jump from section to section, making her more confused.
Now I am not saying she is incompetent. She just needs someone patient to teach her how to take them correctly. The retirement community has a great medical center, complete with geriatric specialists, many programs, and nurses who could help her, but she thinks she doesn't need them. Luckily her back Dr. has prescribed physical therapy, which she will do there. I hope that will at least get her in through the door. Alas, there is noting I can do to fix the situation. And when I talked to her last she was unhappy with me because I spoke disrespectfully of my father. I apologized, but the truth is I have little respect and less patience with him, though I recognize she made her choices years ago, and depends on him a lot. they have been married for near sixty years, most of then unhappily.
I understand the age and cultural gap between her life and mine, and I wonder what it is like to be married to someone-anyone-for 59 years. Especially someone I didn't really like much, but was used to. I recognize that after the two marriage I seriously and truthfully committed to failed, I have been left alone and struggling. Mom is much better off financially than I because she chose to stay married. And she has someone to visit her daily in the hospital when necessary, and to drive her to appointments, and run interference for her in life.
On balance, I think I'd rather live alone than with Geoff or Rene, though I am quite friendly with Geoff now, and still miss Rene's friendship. She made the choice to cut me out of her life completely, and I am still sad-and sometimes angry myself-about this kind of anger and unforgiving behavior that she has exhibited not only with me, but with others she once loved. Water under the bridge these days, I guess, though part of me will always love her.
How on earth did I get there? Ahh-living alone, and facing more surgery, verses my mother's choices in her life. Give me living alone. I have learned to run interference for myself-with doctors and workers' comp and surgeries and hospitalizations and all the more mundane aspects of running a life. I have chosen, and at time thrown into, this over staying in an unhappy marriage. This is right for me, I know, but not right for my mother. As a child I used to act as go-between, to try to protect her from my father. It didn't work then, either.
I am sure there is some archetypal god/goddess, father/mother/daughter story that covers this place I find myself with them, but I don't know what it is, or I'd be busily meditating away on it, like a cow chewing her cud. It's probably just as well I don't know such a story because I am going to need my energy to prepare to face surgery and recovery this month. I will be asking everyone's help later, to wrap me in a blanket of love before surgery, and to pass the word on to others who might understand. I'll explain all that soon-which is another way of promising not to disappear for months again soon!
Blessings to all, Margo