MagogoS's Musings: A Changing Life

Somebody, Somebody, Throw me a Rope

Thu, 04 Sep 2008 22:07:15 GMT

Traveling down some

                   old abandoned road
                   full of potholes and

                   crooked fenceposts,

looking for a sign,

a sign that says Hope.

somebody, somebody

throw me a rope!

--Namoli Brennet

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.

Blessings, Margo

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.

Tags: Continuing mourning, Trying to Cope, Namoli Brennet

Bad Karma

Thu, 07 Aug 2008 18:54:56 GMT

"...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..."

-Namalie Bennett

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.

Margo

Tags: Nomalie Bennett, Anger, Bad Karma, Struggling with Grief

Alive, and Grieving Onward

Thu, 24 Jul 2008 23:41:45 GMT

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

Tags: Thanks for the Support, Grieving is Hard Work, Help from Therapists

Another Day, Another Death

Fri, 18 Jul 2008 02:53:08 GMT

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

Tags: C-Diff Kills Another Person, Random Thoughts and Feelings

Back to the Hospital, Yet Again

Thu, 17 Jul 2008 03:01:38 GMT

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.

Blessings, Margo

Tags: C-Diff, Dad's Second Bout, My Own Exhaustion

Sad News, but a Peaceful Passing

Tue, 15 Jul 2008 02:28:00 GMT

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

Tags: Mother's Good and Peaceful Death, her Last Breath, Praying her Spirit on Its Way

Good News, Sad News

Tue, 08 Jul 2008 19:12:53 GMT

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.

Blessings, Margo

Tags: Meg's Wedding, Mom's Impending Death, Family Gathering in Denver

Still Here, Despite It All

Sun, 22 Jun 2008 00:06:15 GMT

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.

Blessings, Margo

Tags: Survival, Healing, Meg's Wedding, Maritime Vacation, Parents Failing

Complications Where You Come From, Complications Where You're Bound

Sun, 13 Apr 2008 23:42:52 GMT

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.

Blessings, Margo

Tags: More Complications, More Surgery, Wound Vac, Stuck at Home

Complications, Complicatios All Around

Wed, 26 Mar 2008 13:30:36 GMT

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.

Blessings, Margo

Tags: Post Surgical complications, blood and gore, misery and recovery