A Year out from the Beginning of a Firestorm

Because the word "surreal" is so overused I hate to put it out there again, especially because there have been more than enough cliches and empty words swarming my world these days. In many ways, the power of commonality and shared experience can be so healing in times like this and, in its own right, so existentially disconcerting at the same time. I want to know that other people have survived the pain that continues to rip through me, even when I least expect it. And yet I don't want to be reminded constantly that "this is part of life", this is what makes life so valuable, this is what so many people experience every minute of every day that Hallmark could probably have its own subset of stores to capitalize on the variations of the sympathy card.

There is a deep sense of "knowing" with those who share in such an experience, especially those who have lost at a similar time, those who have grieved that same relationship across time and space, those who seem to say what I feel before I am even aware there are words for such a thing. In moments that seem impossible I am desperate for this bond, and yet I can't stand to believe that I have access, let alone membership to such an alliance. I think that it is in these moments that I realize all over again that life has changed; my earth has shifted on its axis in such a way that it will always limp a bit, even if it does have a clearer view of the moon.

This weekend last year Mama Marian turned 57. In all of the trillions of thoughts that pass through the mind each day, the idea that this might be her last birthday was nowhere in the vicinity for me at this time last year. Her last day of work was the 13th, but it was supposed to be a temporary leave of absence. Just before election day she started noticing some changes.

I look back on emails we had written back and forth from work that week and remember Mom laughing about falling with the coffee pot, tripping up the stairs, people on Saturday night at a restaurant looking at her like she was falling-out drunk because she suddenly couldn't walk or keep her balance... Web MD told me again and again that, among the countless ailments she might be experiencing, none of them were serious. We suspected a pinched nerve or even Lyme's Disease.

I was concerned because Mom was concerned... and she was concerned because the doctors were concerned, but we didn't know why? The thought that it might be a tumor seemed outlandish, and besides, all of the tests were negative! Mama Marian, Caitlin, Esther, and I went out to celebrate after the last of the tests was complete. Mom told us all that no one was "more cancer-free" than her. I had come home that weekend because she asked me to, because she was scared. And I was going to go to the airport to go back to Virginia after I took her to the follow-up appointment on Monday morning. I changed my flight for Friday instead when the doctor told us that he thought she should see a neurosurgeon. It was all a mistake, it seemed... people were overreacting, this was probably just Lyme's Disease for the love of God! I never did get on that plane.

Going back, it feels like a different life. It seems like "a bad dream", that stupid old cliche. The next sentence goes something along the lines of, "I'd give anything..." but it nauseates me to hear these movie script lines about something that is so personal, that only seems cheapened by the voice of the common bond of experience. And yet, it is one of the only things that comforts sometimes.

Remembering

Link to Mama Marian's Obituary and Guest Book

It has been a week and a half since Mama Marian died and I think that we are all in a mixed state of shock, grief, desperation, relief for her peace, and at a loss of what to do and where to go now. I would be lying if I said otherwise. The free fall was too fast but, at the same time, not fast enough. I still cannot think of the last few months without wanting to crawl out of my own ski, but memories of the Mom I knew for 28 years continues to amaze me with her presence. If I think too hard or try to analyze what/where she is these days, what is my need to cling to her versus her actual warmth and guardianship, etc... it slides away and the inconsolable feeling of loss returns. And thus, being present becomes more important than it ever has been; in fact, I am beginning to wonder if it is a tool for survival at least for now.

Friends, family, neighbors, co-workers, and friends of these people have been overwhelmingly supportive in the last year, especially throughout the last couple of weeks. I cannot say enough how grateful and amazed I am by so many of you. Mary T was at the forefront in organizing, preparing, and delegating (though I do believe she mostly delegated herself) for Mom's memorial celebration of life. I will probably live out the rest of my own life in debt to her for making Tuesday evening the best it could possibly be in honor of Mom and for all of us. And everyone who came, was involved, or helped us take care of, support, and remember Mom (and/or ourselves!) gave us a gift that will be forever treasured. Thank you again... for all of the everything you are, have done, and continue to do for us.

Dad did something for which I would like to take credit, but sadly cannot. In the midst of being showered with flowers, chocolate covered fruit baskets, plants, pies, entrees, and breakfast foods, he was able to reach out to a few people to ask for their memories in lieu of further donations and flowers. As the nine people in our house did a very thorough job of working our way through a refrigerator and counter-full of food, we began receiving some cards, emails, etc... of the memories of Mama Marian that people around us have shared. Over the last couple of days, these memories have made us smile, cry all over again, laugh, and feel closer to Mom than we have in some time... the old Mom, before the illness, before all of the pain and the cruel deterioration of life.

And so, I would like to be so bold as to ask for something more, if you are able. We would love to have more of this type of remembrance. I feel selfish in asking for more at a time when the people around us have given so much, but I fear that memories will be lost or colored with time and I can't think of a better time to be able to ask so many people something so important to me. Please feel free to write or share something... brief, long-winded, pictures, stories, etc... and do so in a way that you find most suitable, whether it be email, a blog comment, an online obituary guestbook entry, snail mail, or in person. I am touched by the many people with whom we have shared her over the years (or vice-versa in many cases!) and would so greatly appreciate your words as well.

In looking through Mama Marian's college notebooks, letters, and other memories yesterday I found a poem by Tennyson she had scribbled on the front of an envelope. I like to believe it was her way of reminding and supporting us in some of our darker moments.

I hold it true, whate'er befall;
I feel it, when I sorrow most;
'Tis better to have loved and lost
Than never to have loved at all.

Memorial Service

A Memorial Service will be held for Mama Marian on Monday, September 28th, at 4pm. The service will take place at Trinity Episcopal Church in Collinsville, Connecticut and there will be a Celebration of Her Life immediately afterward at the Tomolonius' house in Canton. We hope that you are able to spend the evening with us and come together to remember Mom.

The addresses are as follows:

Trinity Episcopal Church
55 River Rd
Collinsville, CT 06019-3017
(860) 693-8172


Tomolonius Residence:
148 Bahre Corner Rd
Canton, CT 06019
(860) 693-0368

Mama Marian

Mama Marian died this morning at 11:25am. She is, and will forever be, so loved and so terribly missed.

Some Peace, Much Sadness

Today is September 21st. Four years ago, Mama Marian's mother passed away on this day. And, four years later, we are saying goodbye to Mama Marian.

The last two days have brought many changes and the Hospice nurses expect that Mom may go anytime now... perhaps sometime tonight or tomorrow morning. Her breathing has become very raspy and shallow and her skin is beginning to look bluish and dusky. She still looks beautiful, though; and, for the first time in months, she is peaceful, relaxed, and comfortable. I spent last night with her and she was very still, but very hot. She has what they call a "tumor fever" where her brain's temperature regulation becomes affected by the swelling from her tumor and her whole body becomes feverish, except her forehead and face.

We are playing her music and talking to her between our tears and the positioning that the aides do every hour or so to help her breathe comfortably. They have increased her Morphine dose and have added a medication that clears up some of the fluids that collect in her throat, as she is no longer able to swallow.

I can't write much more today... maybe later. I wanted to let everyone know how much has changed and, if you would like to see her, say good-bye, give her a kiss... today would probably be a good day to do that.

Growing Up... Again

Mama Marian started Hospice a week ago at McLean. Since Friday night she has been getting regular doses of liquid Morphine by mouth via a syringe. Even with the Morphine, Mom is in pain. She grabs at her leg and winces when it worsens; just moving in bed is difficult for her, so she is not getting up much at all anymore. Her eyes are closed much of the time these days and it has been several days since she has had more than a few sips of a supplement or a small spoonful of ice cream. It is nothing short of excruciating to see how much things have changed in the last week or so.

I drove home this afternoon and met Dad and May at McLean around 8pm. Mama Marian opened one of her eyes and, with her right arm, pulled me close to her cheek and chin. It was the most wonderful, painful welcome she has ever given me, as I realize how much of an effort it was for her to even acknowledge me at all. She moans a bit and cries out when she is in pain, but otherwise is unable to talk at all. Her eyes sometimes do the talking, though not like they have ever done in the past. I would like to say that we are doing well and that things are getting a bit easier, but I cannot.

The nursing staff, aides, doctors, and Hospice workers are taking very good care of Mama Marian. They try and provide as much comfort and support as they can for all of us. Mom's room smells sweet and she is always so clean, dressed in her own clothing, pajamas, etc... Her hair has grown back quite a bit since the radiation and she has lost so much weight all over, especially in her face, now that the treatments have stopped. She looks beautiful in a way I cannot describe. And yet, she is dying.

I cannot make sense of what is happening or the way that things are today, but I know somewhere, in someplace, it is this impossible only because it of how good it is and has been. And that will someday make things okay again, I suppose. For now it is gut-wrenching and makes me feel a sense of desperation so deep that it physically hurts sometimes. In some respects, it is helplessness... like absolute, inconsolable terror and sadness I can only relate with feeling similar as a hysterical child caught up in the drama of a temper tantrum. Except my mom is not able to soothe my heaving sobs this time, at least not as she has done for the last 29 years. I take comfort in all that I am and all that I have because of who my mom is and who she has been to me. And I want nothing more than to give her back some of that comfort, peace, and strength now, when she needs it most. I guess this is more of that growing up stuff...

An Appeal of Another Kind...

With all of the walls we have come up against these past few days, I have written an email to the Attorney General of Connecticut, Mr. Richard Blumenthal, in hopes he may be able to extend us some help and some hope.

Mr. Blumenthal,

My name is Megan Strange and I am writing to you about my mom, Marian Strange. She is 57 and was diagnosed last November with a Glioblastoma (GBM IV) that is pressing on the motor strip of her left frontal lobe. Over the last nine months, my father and I have chased down every doctor, neurosurgeon, oncologist, and treatment available to buy her some more time. In the midst of this we have been battling the insurance company, my mom’s employer (ironically, The Hartford Insurance Company), and the Social Security Administration for reimbursement, authorizations, and disability entitlements. The hardest part, of course, was not managing the logistics and the bureaucracies, but slowly losing our mother, wife, and, best friend while doing so.

I could go into great depth about our journey, but it would mean very much to me if you would take the time to look at the blog that I have been keeping instead. Here is the link: http://mama-marian-strange.blogspot.com/.

My reason for writing to you tonight is to ask for your help. Every time it seems this could not get any more difficult, it seems to do just that. At this point in time we are at a loss for how to move forward. More than anything, we would love to bring my mom home to our house in Canton to spend her last weeks and days with Hospice to help us care for her and keep her comfortable. However, this has proved to be near impossible for me and my father. She is in a great deal of pain that the doctors have not been able to relieve without leaving her near comatose and has episodes of significant agitation in which she sometimes becomes confused and combative.

The insurance company, Blue Cross and Blue Shield, has denied her any further Skilled Nursing Care after only three weeks, despite our advocacy and expedited appeals. We may have the option of using her $25,000 lifetime maximum of Hospice care allotted by insurance; however this would only allow for a month of inpatient care. Although my mom is extremely sick, she is also young and strong, and we expect her to live for another couple of months at least. After the Hospice benefits are exhausted, we would likely have no other option than to cash in my father’s life insurance plan, take out a second mortgage on a home that is almost paid off after 30 years, and leave my dad with next to nothing. Then, and only then, might my mom qualify for Medicaid to pay for the remainder of her care.

To be honest, I am not sure what it is that I am asking of you. I was told by a friend of my mother’s how proactive and compassionate you have been in your role as Attorney General for the state of Connecticut. She recommended I try writing to you to ask for some guidance, for some support. I would greatly appreciate anything that you might be able to do to help my mom and my family.

Thank you so very much for taking the time to read my email and consider my request for help.

Sincerely,

Megan E. Strange

All in One Day

On an evening the nation is tied up in a debate over health care, we find ourselves muddled in the thick of it in a much more personal way. I am not one to get carried away or fired up over political issues; I suppose I've always left that to my mom. Yet there is something so unbelievably raw about all of this that leaves me furious, feeling desperate, and saddened by what is. On this very day of such focus on health reform, Mama Marian was denied by Blue Cross Blue Shield for Skilled Nursing Care at McLean. We are saddled with choices that seem no one should have to make... choices that should not be choices at all.

And yet, tonight we are doing just that. Dad is home calculating how many days we could buy if we cashed in his life insurance policy, if we took out a second mortgage on the house that is just a couple of years from being paid off... I am four hundred miles away reading up on Connecticut Title XIX Medicaid. What would we have to do to get Medicaid coverage for my dying mom to let her have a few more weeks? Sell a car? Divorce after 34 years of marriage just to have it on paper? Sell the house? After over 30 years of working five plus days per week, raising two kids, and never having to depend on public assistance... ready to settle down and retire... almost. I'm home with my highlighter and pencil trying to decipher how I can somehow bring my parents' "estate" down to $1600 in assets so that they can qualify for a Medicaid Spend-Down to keep my mom comfortable for a couple more months. There is something so completely disheartening and maddening about politicizing health care and how on earth did we come to this place?

We may be able to access Mom's $25,000 lifetime limit on Hospice Care for continued care at McLean. And how much does that buy us? 38 days of inpatient care. 38 days. 38 days ago we were coming home from a "vacation" with Mom. Where could we be 38 days from now? Taking Mom home from McLean with a catheter, unable to feed herself, in breathtaking pain... without help because we've exhausted our "lifetime limit"? How unbelievably inhuman can this nation be?

There is a part of me that is embarrassed to write this, to put myself out there so much... to be so enraged by politics. But how can I not? How can I give into that little faux moderate conformist within me, submit to its attempts at pulling me back with its "can't we all just get along slogan"? It's too important to let this go and pretend it doesn't hit me right at home. It's too much tonight. Too much in one day.

September

As with many things, change becomes more palpable to us as we spend more time with it; either that or we just get sick of thinking and talking about how much we hate it. As much as things have changed over the couple of weeks since I last posted, they have remained consistently tumultuous.

Mama Marian is in the best of hands at McLean, where she has been since discharging from the hospital on the 20th of August. Although we have had to bite, scratch, kick, and claw our way through at times, we have had some very willing collaborators at McLean, and that has made all the difference. We have thus far received 20 days of Blue Cross and Blue Shield's blessing for Mom to be treated as a "Skilled Nursing" patient at McLean and therefore have not yet had to sacrifice any of her most precious Hospice benefits. The value of this is largely understated, as her lifetime cap on Hospice amounts to only 38 days of inpatient care, whereas she is technically eligible for 140 days of Skilled Nursing care. At over $600 per day, we have considered selling life insurance plans, our homes, and our souls for more time.

After everything, it seems Mom is the most content in a nursing home. She has a private room with a sliding glass door facing the woods and an entourage of fabulous people able and willing to help make her the most comfortable. This, at times, is quite a feat, as Mama Marian continues to have extreme pain, restlessness, and agitation at times and her sleep "patterns" are about as varied as medications she has been prescribed.

Dad visits two to three times each day and typically eats breakfast with her, takes her outside in her rolling chair, and advocates for her 24/7. Jeff, Dou, and Lorien came for about a week and left this past Monday after spending lots of time visiting with Mama Marian and even taking her home for a couple of hours with Dad that Friday afternoon. And Mom has had visitors galore from friends, family, and co-workers. She even had a spa treatment, courtesy of some very good friends from Canton (including a pedicure of which I am very jealous!)

For much of the time, Mama Marian has been in good spirits. We do not know what is going on with the tumor because it has been weeks since she has had any kind of scan, but it is somewhat irrelevant these days. Jody, Indiana, and I are here visiting this weekend and were able to spend some time with Mom between some hours of much needed sleep yesterday (for her and, as it turns out, for me too!) Mom continues to crack us up on a regular basis. According to Dou, she revealed some information a week or so ago and let everyone in on her big secret... She apparently announced that she had something to tell everyone and followed this with a very lucid declaration that she is a lesbian. Who knew? Dad is still considering writing down some of Mom's best quotes over the last couple of months, but we can't seem to remember the majority of them.

It is difficult to see her like this sometimes, even when she seems content and restful. She cannot do anything for herself anymore (standing, sitting, transferring, bathing, eating, drinking, etc...) and it seems that her bladder has gone on strike, so she has a catheter all of the time now. Mom did develop a horrible UTI that, although I was unaware this was even possible, was viral and required visitors to gown-up before they came into her room! However, this seems to be on its way out.

Two of Mama Marian's best friends from childhood, Ellen and Mika, came to visit this past week and spent two whole days with Mom. I mentioned this to her yesterday and she said, "yes it was wonderful!" She has also had a visit from her cousins, Denny and Char, and their beautiful golden retriever, Rusty. Animals are a valued commodity at McLean and are welcomed by the staff and the majority of the residents as well. Indy made his rounds yesterday, visited the nurses, the coy pond, and even the chapel!

Again, I cannot say enough about how much of a difference people (and pets!) continue to make for Mama Marian and for all of us. Mom continues to receive mail, even directly to her room at McLean, and the outpouring of visitors astounds me! As much as these changes continue to wear at us, they are softened by the support and love of those around us all.

Home

Three weeks after one of the most difficult legs of this journey, we are all back again; each of us is trying to adjust to a new "home". Mama Marian was transferred on Thursday to McLean, I left on Wednesday to try and pick up the pieces again in Virginia, and Dad continues to go home each night to a seemingly unfamiliar, much quieter house on Christmas Tree Hill.

The last few days of Mama Marian's stay at UCONN Hospital were calm, for the most part. Ann Newkirk threw me the best hospital birthday party on Sunday afternoon in Mom's room. Grandma and Grandpa came with Aunt Kathy and, of course, Dad was there too! I was spoiled with gifts and ice cream cake and Mama Marian sang "Happy Birthday" to me. It was such a nice surprise and I had Mom reminisce as best as she could about the night I was born... as she and Dad have done every year for the last 29 years.

Mom's big brother, Uncle Bob, came to visit and so did Pat and Steve again. May spent time with Mom before she took off to Woodstock and even brought Anja and Baby Sasha to visit! Every time Mom heard a baby outside of her room, she was convinced it was Sasha or Lorien.

So, the last few days at UCONN were relatively uneventful. Mama Marian did fall out/climb out of bed twice; once over the weekend and again on the evening before she was discharged. The doctor ordered a CT scan to make sure Mom had not broken anything. The scan showed increased calcification and edema around the tumor, even in comparison to the one just done on the 2nd of August. These may be attributing to some of the speech deficits and confusion, but we remain pretty much in the dark about how, what, or why... as we have for so long.

I said "goodbye" to Mom after Dad and I visited The Governor's House in Simsbury and then went to look at McLean in Avon again. Although I spent most of the day in between choking back tears and sobbing outright, the visit to McLean helped to ease some of my own anxiety about leaving. The facility is like a campus and it was like night and day between the two places. Seeing where Mom would stay at McLean and talking with the staff made knowing I had to have my 57 year-old mother go to a nursing home a little bit easier.

Her room is at the edge of the woods and it is private. She can even have Indiana and other pets come to visit her. And, of course, we are allowed to come in and out any time of the day or night! My goodbye to Mama Marian was the hardest thing to do, especially because she did not really understand why I was leaving or how long I had been there. She looked at me in a puzzled way as I cried and had a big bloody nose all over her... it must have been an interesting sight to the nursing staff and other onlookers. So, I left her with several kisses, hugs, and a poster with photos and other memories to bring with her to McLean.... and looking somewhat gruesome from the blood all over her hospital gown.

Dad insisted on taking Mom to McLean in the Subie instead of having her transferred by ambulance. This was a great way to go, especially because we were terrified of having all hell break loose again in the transition. It went fairly well, although Mom had to be sedated a bit in the evening as she became agitated after Dad left. She only slept for two hours the first night, but slept through last night and was apparently a bit clearer today. She has had a few visitors already and Dad has been able to spend tons of time and eat meals with her each day as well. Having her so close to Canton makes it easier for everyone and, if she can't be home, it is the next best place for now.

Snoring...

That's what Mama Marian has been doing for several hours today. After not sleeping for over 24 hours yesterday, this is a good thing.

So, where are we today? Room 4036, John Dempsey/UCONN Hospital. I can answer that question. Mom cannot. The doctors believe she has frontal lobe dementia that could be caused by any one thing or a mix of things. The MRI shows some change in edema, but nothing significantly different from the July scan. This means that the dementia piece was likely set off by the change in meds (addition of heavy narcotics and opiates), but could be resulting from late radiation encephalopathy, damage from the tumor, or a combination of variables. The brain is a mysterious thing and, clearly, we are still in the dark ages of understanding its workings.

So, the confusion, speech problems, personality changes, etc... are here to stay for now. However, they are much better than they were two weeks ago when we first took Mama Marian to the ER. The paranoia is less, the agitation and extreme mood changes seem to have died down, and she has been out of restraints for 24 hours now! I was informed by the attending internist yesterday that we are "lucky" that Mom has "pleasant dementia" for the most part. She is pretty happy much of the time, though difficult to understand, and is quite a talker. She cradles the teddy bear I brought to her and refers to it as "the baby". And, her ferocious sense of humor has been keeping the fourth floor nursing staff very amused. She did rip out another IV yesterday and sent blood spurting everywhere, but it was apparently not in agitation or anger... just due to some confusion.

We are waiting on some formalities right now regarding Mama Marian's discharge placement. Hopefully she will be able to get to the Hebrew Home in West Hartford, where we can work with McLean Hospice. They are supposed to come "interview" her sometime soon and maybe we can get her transferred by early next week.

Hopefully Mama Marian will continue to snore the day away and catch up on some much needed sleep. We are keeping our fingers crossed for continued improvement!

Tuesday, August 11th- Day 11 at UCONN

Mama Marian had a great day yesterday. Really, it was a great day. For the first time in weeks, I felt like maybe this would all get a little less horrible. Mom had visitors galore yesterday; many of whom stopped by while she was sleeping. Yes, sleeping, I said. She slept from 4am to 8am then from 10:30am to 3:15pm. And when she awoke, my mom was back for a bit. She was more lucid than she has been in 11 or 12 days, was not in pain, and was able to express herself more clearly.

Arnie visited first, then Judy M., then Mary T. Mom slept through them all. Then May and Heidi came around 1pm and watched the beautiful sleep/snore of Mama Marian until the sitter (Igor the Viking, I have named him) woke her up to change the bedding. She was in such a good mood and delighted to see her visitors! Around 5pm or so Hersch arrived and then around 6 Andrea came. Although Igor did not take as much pleasure in our little gathering, Mama Marian was the best I have seen her in weeks. She even ate her entire grilled cheese sandwich, with some added forcefulness by the Viking!

Last night Mom was tearful while talking with us and admitted that she is still very afraid to die. She acknowledged that she feels safest in the hospital setting (that was definitely news to me!) and that she does not feel like she can come home now. And then she asked me to come and live with her "for 100 years". I told her that I would.

Dad visited in the evening and had some time with Mom before she fell asleep around 9pm. She had been out of restraints for the majority of the day.

However, this morning I returned around 7am and found her back in the mesh, strappy vest (fashion statement, indeed) and leg restraints. Apparently she had refused her nightime medications and they decided to give them to her via injection and IV. It was not a nice night for Mom and she did not get any more rest afterward. After I arrived, though, the strappy vest was unzipped and returned to its spot on the sill and the blue leg cuffs were admonished from the room, hopefully not to return.

Today was another pretty good day for Mama Marian and I am hoping that she has a peaceful evening. Maybe I will go back to see her around med-time and see if she might take her pills for me like she did this morning and has on many other occasions. We've coined it, "the pill machine", as Mom is a champ at taking multiple, large pills in one giant swallow and I help her by tossing them down her throat and then getting her to chase down some water. She always giggles about it before and after with a disgusted expression in between when she gets a taste of that plastic pill chalkiness.

We are looking at a place called The Hebrew Home in West Hartford. It is about 25 minutes from home and Mom could do Hospice there with some extra supervision for some of her wilder, more expressive behaviors. Mama Marian told me this morning that she heard this "awful woman yelling" this morning and the screams were "coming from the basement". After a subtle pause she informed me that it was, in fact, her who was yelling. I must admit, I was not surprised. She has an odd awareness of things that she does or things that have taken place, whether real, imaginary, or simply products of dreamland. We spent a good deal of yesterday reinforcing that May and Hersch did not die while on vacation and that Dad did not have an extra-marital affair with a woman at Brown Elementary School while he was a student there.

The family room downstairs is almost done. Putt and another worker have been at the house daily for about a week now and they have done an incredible job. I update Mama Marian daily on my bird sightings, though most of them I only know by coloring and size. My favorite brand of feeder bird is the "tufted tit mouse" and I have been spying on them regularly from the kitchen window. Maybe Mom will get a room with a window and she can educate me further on the avian species. In the meantime, I continue to make hummingbird food for her feeders and Dad gets the giant pole with a coffee can attached out every couple of days to pile seed into the bear/raccoon/squirrel/people-proof feeder in our backyard. I'm also trying to keep the house plants watered... even the stupid orchids that just sit there refusing to sprout a thing for me.

I miss Mama Marian and am trying to come to terms with "how things are today" instead of getting all stuck in what was and what I hope will be. It's not easy in the least, but I find myself laughing at things she would appreciate, taking joy in what she has always delighted in so simply, and being thankful for our family and extended families everywhere.

Difficult Decisions

Ugh... It's 6pm on Sunday night. Mama Marian is back in restraints with one leg over her padded bed rail and her hands busy picking at the blankets. She just informed me that she does not think that the dog has been fed yet today. She then asked me, "when did you become the ace of your group?" I tried to give her a curly fry and she smacked it out of my hand. She's also been talking to "the person on the other end" of the one-way intercom and leaving voicemails aloud without a phone.

This is not easy... and I'm just a visitor here at UCONN Hospital. Mom has a one to one "sitter", a nurse, several doctors, housecleaning, and room service here. Dad and I have a decision to make and we need to make it soon. We could take Mom home with Hospice in place a couple of hours a few times each week. We also might be able to transfer her to Branford Hospice, an inpatient Hospice, about an hour and 15 minutes from home. If she does go there, though, they require a two month or less prognosis and she would have to be sedated somehow because they do not allow patients needing one to one supervision or restraints. Her prognosis is, at this point, unknown because of failed attempts at getting another MRI. The CT scan does not give enough information to determine the extent of damage or infiltration of the tumor, though it does show a seemingly stable level of edema.

The decision feels like the hardest one yet; harder than the DNR orders that we signed last week, harder than the call to Boston to cancel her scheduled treatments. We want Mama Marian to be home. We would love for her to be where things are familiar, where there are no constant beeps, unknown people coming in and out, no IVs, no intercoms, code blues, etc... But we don't want her to come home if we can't manage her and keep her comfortable. We don't want to bring Mom home just to have to bring her back to some hospital or transfer her to inpatient Hospice. Transitions are nightmarish these days; just changing the bed pad under her requires two people and always brings agitation, yelling, and the almighty death grip. Little changes, movements, extra noise, etc... seem to terrify her and the immediate response is defensive and hostile. And she still isn't sleeping. In fact, through the duration of her week-long hospital stay she has slept about 15-20 hours total. For the most part she has been only eating about 20-30% of her meals. Mama Marian continues to be "on the go" and seems to be relentlessly trying to get out of bed "to leave" and remains restless even when she is lying down. Thankfully, though, she has not had much pain at all over the past few days.

So, here we are with a choice that we are not yet sure is fully ours to make. Tomorrow we will be able to talk more with the social worker, case manager, doctors, Hospice, and Branford. We were hoping that our decision would be a little easier or more clear after the weekend, but things remain much the same as they did last week.

Day by Day...

It's Friday; I can't believe it's been a week since I came home. It feels like the longest week of my life. Mom is resting a bit, though she continues to awaken with the slightest sound, touch, or movement around her. She is still on the 4th floor at UCONN Hospital, in a private room again, with one-to-one supervision at all times. After putting her restraint vest back on after a half-day with it off on Wednesday, it is off again as off 11:30am today. We are hoping that she will continue to be okay without it.

Mom has had lots of visitors this week, including family, friends, a co-worker, and her home health aide, Beth O. She has been so talkative, in fact, she has almost lost her voice entirely and is quite hoarse. Although her speech is still very confusing and very few phrases make much sense, we are becoming somewhat attuned and are getting better at connecting words and thoughts as they come.

This morning we had a family meeting with Mama Marian's doctors, social worker, case manager, and also had a brief visit from the psychiatric team. There are a couple of options for discharge, which will likely not take place until Tuesday at the earliest. Right now, we really would like to bring her home. Because she needs so much supervision and has been restrained so often, an inpatient hospice like Branford would have to keep her sedated. With all of the disastrous attempts at sedating her in the past few weeks, we are VERY wary of this and would also like to have some more time with Mom as Mom if it is possible.

Depending on how things play out this weekend, we would like to bring Mom home with Hospice and some other home health aides in place. The hospital is arranging for a medical bed to be brought into the house and we are scurrying about this weekend getting other odds and ends like pads to go on top of the sheets, a waterproof mattress pad for a twin bed, cups and spoons that might make feeding easier, etc... I am hoping to be able to stay a little while longer to make sure that things are do-able at home, to be sure Mom is safe and comfortable, and to have as much time with her as possible. Dad has already called a friend of our neighbors to knock down a wall in the basement family room that is no longer needed for the old boiler and heating system. This way Mom gets more light and there will be more room for people, furniture, medical devices, and other things. The plumbers are at the house today putting on some finishing touches and Dad plans on spending the weekend getting the room ready for her. She has her bird feeder now hanging from the bottom of the deck and we have been cutting some of the lilies that Mom planted in the yard to put in vases by her bedise.

I continue to stay here most of the time and hang out with Mom. She's had very little pain these past couple of days, which we are very wary about because of how much she has had over the last few months. Dr. Senatus recommended Neurontin or Lyrica for her pain when it does begin to recur, because the narcotics make her so agitated and the pain is centrally located and may respond better to this type of drug.

In the meantime, Mom has apparently been spreading family secrets, like one she told our cousin Pat yesterday. I wasn't aware either, but she had killed a boat builder and Dad had buried him in the backyard. She has also been questioning Dad on a fairly regular basis about him "sleeping with women". Some of it is pretty amusing, though it would be great to have her clear a bit more. I know that we would all love to have some more time with Mama Marian.

Wednesday

Today is a better day so far. I am currently sitting by Mama Marian's bedside and, for the first time in five days, she is sleeping. In fact, she even managed to sleep through the psychiatric rounds with Dr. Hill and his ducklings. She is also currently out of restraints for the first time since Sunday. Her speech is still very confused and difficult to comprehend for the most part, but you can understand what she is trying to get across much of the time by her expressions, movements, and tone of voice. She has been entertaining everyone today, in fact, as her mood has been very pleasant and her sense of humor is clearly returning.

A couple of hours after my last post we received a phone call from the nurse at McLean, who was very concerned with Mom's restlessness and agitation. A few minutes later Abby, the NP at Dana Farber, called in response to Dad's earlier email regarding the change in symptoms. Abby recommended that we take Mama Marian to the hospital, as it was getting too risky for all of us to keep her home. The nurse from McLean agreed when she arrived at the house around 2pm or so and she called for an ambulance to take Mom to UCONN Hospital.

The next few hours were excruciating, as Mom grew increasingly disoriented, agitated, and paranoid. She began screaming before we reached the hospital and I could hear the fear in her voice immediately. It was as though someone had flipped a switch and Mom became extremely labile, screaming in anger one moment and sobbing in terror and grief the next.

Dr. Fuller, the ER physician, was very patient and very respectful of our wishes, experience, and recommendations on how to treat and manage some of Mom's symptoms. He listened carefully as I explained the last eight months as succinctly as possible and took our lead on holding back on narcotics, opiates, and benzodiazepines because of her adverse, and often contradictory reactions to them. Dr. Fuller requested a consult with the on-call neurologist, whom came in shortly after to examine Mama Marian. During her exam, the neurologist had Mom keep her eyes on a five-dollar bill she had plucked from her white coat. In the blink of an eye, Mom seized the money and had ripped it in half. She clutched her portion of the bill tightly and did not release it until Dad pried it from her fingers before the doctor left. The neurologist, Dr. Greenspan (yes, we called her Allen but she was not amused) noted many of the same neurological deficits that have developed with the tumor over the past eight months. She and Dr. Fuller ordered a CT scan after trying to sedate her a bit with 400mg of Seroquel, two Percocet, and two muscle relaxers.

The ride to radiology was a brief one, as Mama Marian decided to climb off the stretcher mid-way through. She began yelling and screaming as though we were taking her to the torture chamber so they wheeled her on back to her "room" in the ER. The doc ordered an injection of Haldol to try and sedate her further, but this just made her even more agitated and angry. Once she seemed to be a bit calmer, though, they tried to take her to radiology again. This time we made it to the CT scan machine, where Mom promptly spread out over the stretcher and the CT scan bed and cursed a few techs out... so, we returned again to the "room" in the ER. On our way back Mom was extremely agitated, so I tried again to calm her and help her lie back on the stretcher/gurney. I received another chomp on my right shoulder and let out a nice yelp so that now not just 99%, but 100% of people in the ER were staring at us in horror.

After this, Mom received another injection of Haldol and anesthesiology was called. They gave her the Michael Jackson cocktail of Propofol to knock her out. The CT scan was done, she was returned to her "room", and we waited while they prepared to admit her. Little did we know, she would not be admitted until the next afternoon...

Monday and Tuesday brought some changes, good and bad. A psychiatrist, Dr. Hill, met with Mom and explained that he and the psych team were going to experiment with some medication to counter the psychotic effects from the narcotics and opiates she had been given. She has responded well to Zyprexa and this is her second day on this. She has also just been prescribed Elavil for depression and for her pain, while the Cymbalta that was started last Wednesday was discontinued. They are also weaning her back off the Decadron, as she does not have much edema apparent in her scans. Mama Marian finally got some food in her system yesterday around noon, as she had not eaten since Sunday. And today, finally, she began to sleep again. She had not had any more than 20 minutes or so of sleep since Friday night.

We managed to get Dr. Senatus, Mom's neurosurgeon, involved again with Mama Marian's case. He came yesterday for a consult and Mom was delighted to see him again. Dr. Senatus explained that much of Mom's pain is "centrally located" and is very difficult to treat. However, he recommended a couple of drugs and will be following her for the remainder of her hospitalization.

In the meantime, Mama Marian has had some great visits and advocacy from friends at home and work. Mary T. has been so good to Mom and has helped me and Dad out quite a bit as well. After her visit with Mom on Monday, I called her to put her on the case yesterday morning while I contacted Dana Farber, Dr. Senatus, and Dr. Levine to get them further involved.

There are many questions looming... what caused what? Why is this happening this way at this time? What exactly is going on and how long will it continue? I have been trying to stop the questions, because they are becoming less and less important these days. What matters is that we are doing what Mom would want us to do; we are making sure she is as comfortable and pain-free as possible. I suppose we have the rest of our time on earth to ask questions, but for now it feels like somewhat of a relief to put the puzzle down and take a look at the bigger picture. We hope to bring Mom home when she is discharged and will have Hospice in place. If she is not able to be managed at home, the doctors have presented us with inpatient Hospice options as well. We are lucky to have this time with her and will take the good days, or hours sometimes, as they come.

The Longest Roller Coaster Ride...

...is 273 seconds long.  That's the longest one in the world.  273 seconds is about four and a half minutes in duration.  It must be a blast.  Roller coasters are something you decide to climb on and off and, for a few seconds or minutes, everything spins out of your control.  It's terrifying and it's breathtaking, but it's only fun because it stops and you know that it's going to stop soon... within no more than 273 seconds.  

This ride is longer.  It's terrifying and it's breathtaking and it's not any fun because you don't know how long it is until it stops and you don't want it to stop because you can't get back on when it does.  In the meantime, though, you have no control and slowing down or speeding up happen all on someone, something else's time.  

We start Hospice with McLean on Monday.  After another week of pain and little to no relief without hallucinations, delusions, and extreme discomfort Mama Marian will stop palliative treatment for her brain cancer.  She can no longer stand on her own, walk at all, feed herself, or make it to the bathroom.  It is terrifying and painful for her just to get out of the bed.  When we help her to move her on to the little bedpan/hospital commode it is horribly frightening and painful for her.  She yells out and grabs us with a shockingly powerful grip and does not let go until we pry each finger individually off and move it to the next handle, sheet, hand, back, neck, or piece of clothing.  

Beth O., Mom's home health care aide, and Jean M., Mom's home-based physical therapist, called me on Friday afternoon to let me know that it was time for me to come home.  Things were "different" and changing quickly.  Mom told Beth and Jean that she no longer wants to leave the house for anything.  She agreed that Hospice seems to make the most sense at this point in time.  

Mom started a Fentanyl pain patch on Wednesday after seeing Dr. Rosenberg for a required referral to a pain management clinic/doctor.  She slept all day on Thursday but was up most of the night with increasing pain and discomfort.  On Friday morning Dad woke her up very early for an appointment with a pain management doctor in New Milford.  It was almost impossible to help her down the stairs and, when she reached the landing, Dad had her wait while he brought the wheelchair up to the front steps of the house so that he could take her down the lawn to the car.  She was unable to walk the remainder of the way down the stairs.  

The pain management doctor gave Mom few options that we have not already explored.  He told her that she could increase her muscle relaxer before bed but, if she does this, should not take it during the day.  He also gave her a Lidocaine patch to put directly on her leg and ankle where she is having the most severe pain.  Another prescription for Valium was written and Botox was briefly discussed once more, though the doctor did not expect it to help much and does not offer this form of pain alleviation treatment. 

When Mom came home that morning she could barely get out of the wheelchair and into the house.  Dad helped her to the couch in the basement family room, where she has stayed since. Beth and Jean helped us with the decision to pursue Hospice and Jean spent the afternoon and evening setting up weekend nursing and initiation of Hospice care for Monday or Tuesday at the earliest.  I drove home to Connecticut from Virginia that night, but did not arrive until about 2am.  

The weekend has been excruciating.  I cannot think of a more appropriate word to describe almost every moment over the past two days.  Mom is still in pain most of the time and is extremely restless.  She gets up to use the bathroom several times each hour, but often is unable to go at all.  Her speech is confused and chaotic, most of it incomprehensible.  The "word salad" or schizophasia is often very agitated, especially when she is in pain or experiencing some kind of drug-induced psychosis.  

The tremors and muscle cramping have spread from her right side to her left.  We are unsure of whether or not this is mass effect from the bulkage of the tumor, meaning that the cells are now impacting the left side of the brain and right side of her body.  This midline shift can indicate swelling or tumor growth that causes symptoms to move from one side of the brain to both sides.  It may also be a side effect of the Fentanyl though, as one of the more severe side effects of this medication involves muscle spasms and seizures.  These days, it is almost impossible to discern what is the illness and what is the treatment.   

In between the pain and discomfort Mama Marian is very sweet and full of smiles, laughter, and "I love you"s.  She is consistent in telling us that she "needs to go" and "can't do it anymore".  At times, I think she feels as though we are keeping her here, though we continue to let her know that we are with her wherever she is and are okay with whatever it is she wants or needs to do.  She tells us that she's "got to go" again and again and, when Dad asked her Friday night where, Mom replied, "to the place where people go when they die".  Other times, Mom seems to be carrying on conversations with friends, family, or other people who aren't in the room.  Even when she sleeps she talks, sometimes mumbling and other times is quite clear.  

There are times that are so painful and so frightening that it seems unreal, like this cannot actually happen in real life... like we are in this forever unfolding dramatic movie.  Mom's desperation is unbearable during these times.  Last night we helped her into the wheelchair so Dad could change the sheets.  After just a minute in the chair, she was terrified and extremely agitated.  I tried to calm her, hold her, help her move so she could be comfortable, but nothing seemed to help.  She grabbed at me and finally bit me hard on the shoulder.  When I screamed out she suddenly looked at me in this moment of pure lucidity and her face fell while she started to cry.  It was awful.  Mom's panic takes her farther away and she forgets who we are in these moments.  Last night around midnight she became actively psychotic and extremely agitated, yelling at us to let her go and furious with someone or something that we could not determine.  We tore off her Fentanyl patches and her agitation and aggression have since subsided.  Though the confusion and pain continue, she does seem a bit more oriented.  

Mama Marian is currently laughing in her sleep, though as she still does at times.  She had an hour or so yesterday of laughter and smiles where she seemed high on the meds, but still restless and unable to relax.  Right now she is talking to me in her sleep, repeating "Megan began... Megan began..."  And then it turns to "ow, ow, ow... oh, Megan... ow!!!"  and another bout of pain and restlessness ensues.  Sleep only seems to take her away for minutes at a time anymore.  She falls asleep but is awakened soon after, always telling us she needs to go, has got to go.. then we help her to stand, only so that she can beg to fall back on the bed.  It feels endless and full of torture and unknowing a lot of the time.  

Mom's roller coaster ride continues.  The adrenaline rushes, the wind pounds, your stomach drops as the ride goes over another hill...

Home Again

After one of the most difficult paths on this journey, Mama Marian made it home again this Friday evening.

The results from the CT scan came back as we suspected; no new tumor growth is apparent, just minimal necrotic tissue and a gaping hole in what was.

Mom's pain responded well to the Toradol, although it can only be taken for five days and results in some mood changes and confusion. Though, it seems nothing can compare to the effects of the Dilaudid and Valium they had been giving her. She had a severe allergic reaction to one or both of these, which resulted in a drug-induced psychosis of sorts. This was terrifying for her and for us; however I must say that it earned her a private room by the nurse's station and 24 hour "sitter" care.

On Wednesday night I took advantage of the open hospital bed and "slept" next to her in her room. I stayed for some uneventful rounds with Dr. Dos, a consult with Dr. Anderson the physiatrist and a hospital physical therapist as well. Dr. Anderson examined Mom's leg and discussed her treatment history with us. He suggested she consider Botox treatments to relieve some of the pain in her leg. Dad checked with Dr. Drappatz, Mom's neuro-oncologist at Dana Farber, and he encouraged us to explore it as "one of the many" pain management options available. Dr. Anderson explained that Mom's spasticity and focal seizures might respond well to Botox treatments, as they have been effective for stroke patients and individuals with Cerebral Palsy. As an added bonus, Mom's already nice legs may be runway material after treatment! What a thought... treatment with positive side effects!

Around noon Jeff, Dou, Lorien, Aunt Beth, and Uncle Al arrived to visit. There was no talk of discharge at that point in time so I went back to the house with Beth and Al for some much needed quality sleep. On the way home, we learned that they had decided to discharge her that afternoon. Dad was already on his way up to the hospital after packing all of their belongings, as he expected to spend a night or two in a hotel nearby. So, Mama Marian was released with a three day supply of Toradol and some less-than-fond memories of her time on the Eastern Shore.

Beth, Al, and I didn't get to say "goodbye" to Mom, as Dad wanted to get on the road as soon as possible and it would have been crazy for us to make the hour long drive back right after we had returned. Plus, I was approaching delusional myself at that time and couldn't imagine being of any help to anyone. So, Dad and Mama Marian climbed back in the car for a daunting drive home to Connecticut. Dad said that Mom all of a sudden realized over dinner that evening that she had missed much of the vacation she had been waiting for all year. I think it hit me a little earlier when I came home to a much emptier beach house and the impending doom of the next day's 10am check-out. In all of the back and forth driving, sleepless nights, frantic phone calls, bedside sitting/care taking our vacation had slipped away and much more-so for Mom. She barely remembered the actual terror of that Monday night in the ER, sweating through two pillows and blankets, crying out for relief, begging us to just let her go... instead she had formed hazy memories of fighting for her children whom she thought they had taken, leftover feelings of embarassement and shame over doing some things she couldn't quite remember or figure out, and days spent in a foreign place she never could quite identify with care and relief.

Mom and Dad made it home on Friday evening after a difficult car ride and a much needed night of rest at a hotel in Princeton, New Jersey. Dad detailed a memorable "pit stop" of sorts at, of all places, the Cloisters in New York City. Assuming a Metropolitan Museum of Art might have good handicapped accessible facilities and with a sense of urgency, Mama Marian and Papa Jim made a somewhat regrettable, but memorable rest stop in the city. I know that I've gone over the frustrations of "learning" the very unaccomodating ways of this world to the disabled, but I do believe this experience surpassed others on level of difficulty. Mom got in and out of her wheelchair, climbed steps to more steps, waited for one guard to lead them to another guard to enter a private back entrance to more steps and different guards. Finally, bathroom privileges were granted and they decided to celebrate with dinner in the courtyard. Dad explained that Mama Marian, through much discomfort and returning pains, found great joy in the beauty and nature of the courtyard and the many birds that descended on her throughout their meal. That's the thing about Mom... she always takes the greatest of pleasures in the simplest of things, even when the pain and sadness is so abundant.

So, now we look onward to where we go next... Mom wants to go back to Dana Farber for her next appointment on August 6th. In the meantime, we need to find good relief and we need to find it fast. Dad and I are researching pain management clinics in Connecticut that are nearby, have a reputable neurologist on staff, and offer alternative procedures and treatments like Botox. Mom has another day of the Toradol remaining but cannot continue the medication after that. And the Percocet and muscle relaxers are not enough to cut the excruciating pain and discomfort. There is not much that we are able to do over the weekend, so tomorrow will likely bring many more phone calls, faxes, emails, and experimenting with "what might work".

I do want to let some people know how much they have helped us recently, as I'd be remiss in not giving thanks where it is more than due. Especially to those who are able to be so "hands-on" at home... Mary T., Andrea, Judy M., and (of course) Beth O. And also to those who continue to contribute to the "Friends of Marian" fund, help us with words, presence, knowledge, and even the seemingly small offers of support. It's funny how awkward it is when you're on the other side of these things. I've never known quite what to say to people going through illness, death, and hard times when they are not the closest of friends (or clients...). Somehow, though, it doesn't matter at all. The words, the details, the motions are so insignificant. What makes all the difference is that there are so many people willing to go through this with us, in whatever way they can or cannot. So, thank you, again... to everyone.

Some Difficult Times

It has been a difficult couple of weeks for Mama Marian and for us all. After the positive MRI results at the beginning of the month, we hoped that the pain in her leg would begin to subside with physical therapy and medications. Unfortunately, things went the other way. Mom's pain increased over the days and weeks that followed and she has found little relief or comfort for the spasms and cramping since.

On the 10th of this month Mama Marian had a serious fall between the headboard of her bed and the dresser in her room. She had been wanting some fairly minimal privacy to get dressed, use the bathroom, etc... at times and had asked her home health aide, Beth, to wait outside the door while she changed that morning. Beth heard her cry out as she fell and called the ambulance when she saw that Mom had hit her head. Fortunately, it was just her face that was bruised and she was released that afternoon after some x-rays and pain medications. May was, as always, amazing and canceled her plans to pick Mom and Beth up from the hospital upon discharge. Coordinating the details of such things can be difficult from several hundred miles away and it was such a relief to know that she was in such good care.

The following Monday, Dad and I tried to find some inpatient physical therapy/rehabilitation for Mama Marian, as she was unable to continue out-patient treatment with her pain and fall risk. The doctors felt that the PT might help relieve her pain and help her re-establish some movement and coordination, but it became near impossible to do it safely or without terrible discomfort. We called a couple of places in Connecticut and emailed with the Nurse Practitioner (NP) at Dana Farber. Abby, the NP, explained that she is concerned about Mom's quality of life, despite the tumor's reduction in size, as evident on the recent scan.

Although the tumor is taking up less blood this does not necessarily indicate that it is, in fact, smaller or less invasive. So, regardless of improvements seen in the MRI, the symptoms continue to worsen. Abby suggested that we consider the possibility of discontinuing the Avastin so that Mom could enter hospice care for comfort and pain management. She also mentioned some pain management clinic options that we could pursue closer to home in Connecticut if we wanted to continue the Avastin. This was the first mention of hospice as an option and it was repeated during Mom's follow-up visit to Dana Farber the following Thursday. Mom and Dad left the hospital after her infusion feeling somewhat confused and taken aback. How and why would we want to give up the treatments that have been so effective in shrinking her tumor? Avastin has been the only thing that has worked so far!

So, we arrived at Chincoteague Island this Friday with heavy hearts. The trip took over 11 hours for Mama Marian and Dad, as they hit horrible traffic on the dreaded New Jersey Turnpike. I arrived earlier, around 7pm, after spending the past couple of days taking care of Jody post-surgery and trying to get some last minute things in place before I left. The sun set over the beach house that evening right as a rain shower passed through. Mom and Dad got to the house about 11pm that night.

We took Mama Marian to the beach on Saturday after she had breakfast and took a nap. Her pain seemed to be getting worse and she was exhausted from the Percocet, muscle relaxers, and anti-seizure meds that she continues to take. However, it was a beautiful afternoon on the beach and we were able to get Mom a free pass for the beach and for all the National Parks because of her disability. The Kiwanis Club offers beach wheelchairs for use and we were able to borrow one for a couple of hours to get Mom onto the beach.

When we returned to the house, Jeff, Dou, and Lorien arrived. We all went out to dinner at the Sea Shell Cafe and took Lorien to see the ponies across from the restaurant. Afterward we went home and Mom was so exhausted she went right to bed. Uncle Al and Aunt Beth arrived shortly after 9pm but were not able to say "hello" until the next morning.

Sunday was a difficult day for everyone. Mom was up for a lot of the night on Saturday after we all went to bed and she had some fairly severe leg pains early on Sunday morning. We managed to get out for lunch and ate at The Crab Shack outdoors on the porch. Although we planned to go to the beach afterward, Mom asked to just go back to the house. She was so tired and was starting to have some more pain in her leg. Aunt Beth stayed with Mom while she rested.

That evening before dinner we were able to sit down together on the screened-in porch. We talked about the last several months, Mom's diagnosis, and the latest from the doctors at Dana Farber. It was very, very difficult for all of us and I felt the lump that had been sitting in my throat all week begin to ache as Mom told us that she doesn't want "to go" but doesn't want to be in this much pain either. We had been grieving the changes for months... acknowledging that Mom would most likely not get back on her bike again, would not be able to cook Christmas Eve dinner, or even terrify us behind the wheel of her Subaru as she swerves for mailboxes. But this was harder. We listened through our tears as she told us that if the pain is not under control soon she cannot continue to fight the cancer for long. The decision would be hospice unless something was able to alleviate the pain in the meantime. Mom also wanted to talk with the doctors at Dana Farber one last time.

Late Sunday night/Monday morning Mom woke up with intense, shooting pains through her leg and foot. She told me when she had never been in such horrible pain. Throughout the day on Monday Mom slept and was only awake for an hour or so at a time. At one point she got up and was singing in the bathroom, putting on her makeup, and getting ready to go out on the town. After an afternoon nap, we decided to get everyone together and go out for some seafood. However, about 20 minutes after getting to the restaurant and ordering Mom wanted to go out to the car. We took her to the car but she was in a lot of pain and wanted to leave so Jeff and I drove her back to the beach house. Her pain continued to intensify and when we got back to the house she couldn't get out of the car, so we took her to the hospital.

The hour-long drive to the hospital was excruciating for Mama Marian. Jeff defied the laws of physics and the limitations of the station wagon with 85 mph speed and I did my best to crawl over the front seat to massage some of the pain out of Mom's foot.

As we waited for the Physician's Assistant (PA) to get to Mom's room in the ER, the cramping in Mom's leg became unbearable. Despite our efforts to help steady and relax the muscles, her right foot started to shake uncontrollably and she was screaming in pain, begging for some relief. At that point, Mama Marian was very clear in her thinking and in her speech. She was finally given an IV of Dilaudid and Valium and, as it began to take effect, Mom told us very simply and honestly that her decision was now clearly to move ahead with Hospice. Dad, Dou, Lorien, Beth, and Al had all arrived about a half hour after Jeff and I. After four more injections of Dilaudid Mom's pain level was down from a ten-plus to a three or a four. Dad and I left at about 3am after the PA agreed to admit her to the hospital.

Two days later, here we are on the 5th floor of Peninsula Regional Medical Center in Salisbury, Maryland. Mom has had another couple of rough nights. No pain... but confusion, agitation, and delirium from the heavy narcotics. She is unsure of where she is and why she is here. Last night after we left the hospital she was moved to a private room close to the nurse's station because of this. This morning they started her on a non-narcotic pain reliever, Toradol, and discontinued the Valium, in hopes that the cognitive side effects would subside. They did momentarily afterward, but this afternoon brings increased confusion and disorientation for Mom.

We are working on getting Mama Marian a flight from Maryland to Dana Farber in Boston. She cannot travel again by car, as the trip is too long and uncomfortable for her. At this point, we are trying to get a flight through Angel Flights. They would transport her by private plane or jet at no cost to us. The logistics are still being worked out, however, and we continue to wait on the results from Mom's CT scan this morning.

I will continue to update as I am able. Words are hard to find these days and putting them on "paper" seems even more difficult. Please keep Mama Marian in your thoughts, prayers, and minds and know that we are so grateful and so delighted to have so much support and love through all of this.

MRI Comparison March vs. July

So Happy and Glad

Those were Mama Marian's exact words today as we waited for her Avastin infusion. After an anxiety-filled morning, we received good news today from Dr. Drappatz. Mom's MRI is stable and he is very impressed with the shrinkage of the tumor. The Avastin has shrunk the tumor down considerably, in fact it is as small as it will ever be. We are so happy and glad!
The pain that Mom has been experiencing continues to be unbearable at times and has made any kind of walking/exercise/physical therapy extremely difficult. Dr. Drappatz believes that her entire leg is increasingly stiff because of the neurological damage from the tumor, which is not expected to improve. However, some of the discomfort around her knee area is a result of muscle damage after her fall a month ago. She still has some bruising around her knee and will need to follow up for an orthopedic evaluation to see if she may need surgery. Maybe Mama Marian and Jody can get dueling knee surgeries to streamline the process...
On another very bright note, the fundraiser cocktail party was a huge success in so many ways. As you can see in the picture above, Mama Marian (aka "Cosmo Girl") enjoyed herself to no end. She was so excited to see so many friends, family, and co-workers and has not stopped talking about it since. Thanks to an outpouring of unbelievable generosity, it looks like we will be able to afford about three more months of home health care for Mama Marian!!! This is HUGE and we are so, so, so grateful to Jeannie, Mary, and everyone for a very fun evening and for the peace of mind that is beyond priceless.

What Hasn't Changed

Through x-rays, ultrasounds, super ultrasounds, an MRI, and too many doctor appointments Mama Marian has finally found some relief for her leg pain. And yet there are still so many questions, hypotheses, and a variety of non-encompassing theories as to why it is there in the first place. The MRI suggested a muscle tear, the PT thinks it may be the way Mom has been compensating with her hips for what her right leg can no longer do, and the neurologist believes it may be all of the spasms she has been having.

It was quite a process, but Mom left Dana Farber on Thursday fully infused and with a prescription for Percocet. Although I can most certainly appreciate the concern and caution surrounding the prescription of narcotic pain killers these days, getting them when you really need them can be a daunting task... apparently even for someone with a terminal illness. Mama Marian continues to try and take Ibuprofen during the day so she doesn't get so sleepy, but the Percocet is there when the pain is too great and to help her stay comfortable through the night. She also continues to have focal seizures that are short and localized on her right side, but often leave an aftermath of exhaustion and depletion of what was, even seconds beforehand.

The doctors continue to work on finding the right level of medication to reduce and minimize the seizure activity in her brain. For the most part, though, Mama Marian is not alarmed or frightened by it anymore. She is tired of being sick, of course, and tired of being tired, but continues to delight in all that has brought her pleasure in the past.

So Aunt Beth is enduring the journey/maze and is putting on the many hats we have become accustomed to wearing these days... caretaker, nurse, advocate, medication administrator/pill counter, driver, call center operator, relayer of information, and chief investigator/detective of all things new, concerning, and symptom causing. When I think about it, it's no wonder people automatically consider parental caregiving "role reversal"; it's really just a glance into what it must be like to be a mother or a father.

Through all of the changes and through all of the grieving that continue to be so prominent in our lives, I continue to find the advice of others so true through experience and reflection. What family, friends, co-workers, neighbors, and even strangers have said about this process sometimes doesn't make sense or feel right until much later when I find that I am relaying it to myself or recognizing its truth in the moment. When Mom was first diagnosed and I could not seem to find solace in much of anything, many people told me that she will always be here, even after she dies; that she will always be my mother and that a part of her will forever be with me. This didn't make much sense to me at the time, but I heard it again at Tracy Sigman's memorial last month and suddenly the little seed that was planted long ago began to take root. Ben said simply at the end of the service, "I've learned that it's not that I loved my mother... it's that I love my mother" (or something similar... sorry Ben if I've misquoted you!)

At first, it was painful to recognize how much my mom is a part of everything that is life for me; at times it still is. It sometimes feels like a slow tearing of my heart. Yet, on beautiful summer mornings like today I smile at how much of her is in me taking joy in the world around me.

When I was growing up I would roll my eyes at how seemingly "over-talked" and "over appreciated" the smallest things would be in my house. Mama Marian finds delight in what often gets overlooked or taken for granted... a light wind, a red cardinal on a tree branch in the yard, the warmth and comfort of her own bed, a smile on a dog. Over the years, I've learned to love this and find it endearing and even inspirational. Every now and then, I get a glimpse of that in me and it makes me laugh. I realize how much we are alike and how much of me is really her and I am grateful for that; I am comforted and warmed by knowing how much has not changed and cannot be taken away.

Where Things are Today

Mama Marian has been fortunate enough to have her "leetle seester" come and stay with her for three weeks. Aunt Beth arrived on the 8th and is staying until the 27th of June. This is Beth's third journey to visit with Mom since December and we just learned that she and Uncle Al plan on coming for Chincoteague too! I would have to say that one of my favorite memories of Aunt Beth and Mama Marian involves the two of them watching Saturday Night Live (during the height of its quality years) in our basement laughing hysterically and doing "It's Pat" renditions for the next couple of days. That, and Massive Headwound Harry, became a pretty common routine for a few months.

So, Beth is visiting and giving Mama Marian top notch quality care! She has been taking her to and from appointments, helping her with the PT exercises, managing the dozens of pill bottles, and driving to Boston, Rhode Island, and back with Mom and Dad. They went this past Tuesday to see the neurologist at Brigham and Women's, where Mom had her EEG a month or so ago. The neurologist believes that Mom continues to have seizures and is experiencing muscle spasms in her leg and foot that may be causing some of the pain and discomfort. He gave Mom a new medication, a muscle relaxer, to help with that and is keeping her on all of her anti-seizure meds for the time being.

Since Tuesday, Mama Marian has had doctor appointments and an ultrasound to further follow up on the pain. One of the side effects of the Avastin is blood clotting and so they have been trying to rule this out. In fact, because the pain continues and does not seem to be getting better, Mom returns tomorrow for another test; this time it is an arterial ultrasound of her lower body. She will meet with Dr. Rosenberg again tomorrow afternoon for the results and follow up. Hopefully Mama Marian will get some relief from the pain she has been experiencing.

Mom continues to have some confusion and has difficulty with short-term memory and word finding. This frustrates her to no end, but is a symptom of the brain tumor itself, medications, surgery (scar tissue forming), and seizures. She seems to go up and down with regard to the confusion. I was lucky enough to get to share a very cool evening with her this past Thursday when I called her to let her know that Jody and I had gotten engaged! I had spoken with her previosuly in the afternoon and she sounded the best that she has sounded in weeks. Then again, when I called her after dinner, she was again very clear and much more herself.

I must also thank Mama Marian for prepping me for the caretaking of Jody, my new invalid patient, who tore his ACL and may have dislocated his knee yesterday in a baseball game. There really needs to be more professionals in this world simply to advocate, barter, beg, and maneuver through the health care system for people. I'm glad to have learned some of the ropes, so to speak, but it surprisingly doesn't get any easier (or less frustrating) each time around!

I just wanted to send a quick "thank you" to Jeannie and Mary, who have been unbelievably awesome in coordinating an event to help our family... We continue to be amazed, grateful, and inspired by the people around us for all that they do for us. Honestly, even what may seem like the smallest of things makes such a difference, and serves to remind that we don't have to do this alone.

Six Months

It has been six months since Mama Marian's diagnosis, subsequent surgery, and the beginning of an onslaught of treatments. We are fortunate to have found a brilliant and kind neurosurgeon, a caring and genuine radiation oncologist, and everyone at Dana Farber along the way, as we have more time with Mom than many do with the same diagnosis.

Mom and I had an enjoyable trip back to Connecticut two weekends ago. We ate tons of Ellen's chocolate chip cookies and sang of-key along to oldies on the radio. And, I acquired the skill of successfully maneuvering Mom's wheelchair through any New Jersey Turnkpike rest stop!
The weekend was beautiful and Mama Marian had plenty of deck time in the sun. We also got to pick up Mom's fabulous new wig (sorry, "cranial prosthetic" for insurance purposes), which she absolutely adores! I must admit, I am a bit jealous and may be obtaining my own cranial prosthetic some day, just to get out of 30 long minutes of hair drying and flat ironing in the morning. We had fun trying it on Dad over dinner as well.

Mama Marian's home health aide, Beth, was able to help out on Monday, Tuesday, and Friday of last week and Mary T. and Linda Q. spent some time with her as well on Monday and Tuesday afternoons. Dad stayed home with Mom on Wednesday and took her to Dr. Rosenberg's office for her continued leg and foot pain. She had more x-rays there, showing no breaks or fractures again, just likely sprains, bruising, and soreness from her falls.

Mama Marian and Dad drove to Dana Farber early Thursday morning for Mom's bi-weekly appointment and Avastin infusion. Dr. Drappatz looked at Mom's x-rays and prescribed her a topical gel called Voltaren for the pain in her leg and foot. He believes that some of the confusion may be a result of "scatter radiation" from the six weeks of radiation therapy in December and January. It could also be the result of scar tissue forming from her surgery in November, seizure activity, or the medications that she has been taking to prevent the seizures. She has not had an MRI since April 30th and will not have another scan until July, as Dr. Drappatz believes that the tumor has been stabilized by the Avastin for now. He does continue to push physical therapy to help Mama Marian improve on her coordination and Mom is scheduled to return to McLean for PT this Thursday and Friday.

Aunt Beth is coming tonight and is staying until the 27th to visit and help out for a couple of weeks. Mom's usual home health aide (the other Beth!) is unable to come full time until July and I am trying my best to spread out my 12 weeks of FMLA leave throughout the year. Mama Marian needs someone to be with her throughout the day while Dad is at work. This has been one of the most difficult changes for all of us, but especially for Mom. However, if she does fall and break something she will most likely have to stop the Avastin treatments. The falls she has already had have been painful, terrifying, and have set her back considerably with regard to PT and independence. So, it's one of those things... one of those cyclical things that leave us with choices none of us want to make in the first place.

Mama Marian has been learning to get around on her new walker, one that Linda M. brought by for her to use last week. She likes it quite a bit, but is a little taken aback by its speediness (this from a woman who we used to call "Lead Foot Marian"!) Dad took her to one of their favorite places in Massachussetts yesterday where they used to drive an hour just for good Mexican food! Mama Marian got to try out her new wheels (yes, wheels) on a walk through North Hampton.

Aunt Beth comes tonight and tomorrow evening she and Mama Marian will go back up to Boston to meet with Dr. Jong-Lee, the neurologist who did the EEG last month during her overnight stay at Brigham and Women's Hospital. Hopefully, she will be able to go down and eventually off of the Keppra, as the Lamictal is up to full therapeutic strength now and her focal seizures seem to be more under control.

We continue to look forward to our week in Chincoteague and are so excited to spend some time with the wild ponies, beautiful sunsets, and lazy days on beach. Hopefully Jeff, Dou, and Lorien will be able to come as well. We are still waiting to hear whether or not Jeff is able to get the time off. Mom has already decided that she is going to find some way to bike herself to the beach like we've done in previous years. Dad and I are trying to find her a suitable chariot!

Sometimes Nothing is Easy

There are cobblestones in Old Town, ruts and bumps between every curb, 6 different ways upstairs but only one that is handicapped accessible... A bone might be broken but a trip to the urgent care for someone who has spent the last six months in and out of the hospital is not an easy trip to take. We've gone to the beach a thousand times, but have never spent weeks trying to get a beach wheelchair rental or a van that might carry a beach wheelchair. There is a path along the waterfront but only half of it is paved... we want to go to a memorial for a friend this weekend but might not be able to get there because there is no place to park or walk safely with a wheelchair. A shower is an arduous process that takes more time and strategy than a game of chess some days.

I'm tired and sad because this is exhausting and change is at every corner... change that none of us asked for and none of us could ever have predicted. The hardest part of it all is watching Mom with tears in her eyes after it takes her minutes instead of seconds to cross a parking lot or seeing her defeated look at a bowl of soup she cannot carry from the kitchen to the table because she needs both hands on her walker.

One of the most disillusioning of things is the voice in the back of my head that constantly reminds me how much I've/we've taken for granted... how impossible it is to know how impossible things can be within a matter of hours or days. It is like briefly catching glimpses of it when you watch a sad movie or see someone shuffle into restaurant, visit a sick friend in the hospital... but seeing and doing it every day hurts like hell and I am humbled by what I did not know before this. Of course, no one can go back, no one can know until they've "been there", but it's almost painful for me sometimes to think about how oblivious I have been to just how good we've had it.

Mama Marian is tired today. I messed up her medicine last night and gave her the morning doses instead of the evening ones. It was after a three and a half hour trip to the Urgent Care facility, where I made her go to get x-rays, only to learn that there was nothing broken, nothing fractured... just a badly sprained ankle and knee. It was during the bath I tried to give her to relax last night afterward, only to find that I would end up terrifying her more trying to help her out of the tub later. Nothing is easy sometimes. I want things to be magical and times to be special. I want to have the best of memories and give Mom every smile, every laugh, every hug that I can... so I took her on a walk by the water today only to make her fall out of her wheelchair onto the pavement. I can't make any of this go away and sometimes it feels like I can't even make it any better or easier. I want to so much.

I suppose this is one of those times that is only made tolerable by knowing that life is not supposed to be easy. As M. Scott Peck said,

"Life is difficult. This is the great truth, one of the greatest truths—it is a great truth because once we see this truth, we transcend it.”

I know that this is why life is so precious; it would not be if it came easily and quickly and if it lasted forever. So I will try to celebrate the beauty of what is and what has been and try not to get held down by what is lost. It's just a bit harder some days than others.

Memorial Day Weekend

Well, it is early on Tuesday morning. I heard Dad leave this morning around 5am and got up to check on Mama Marian still asleep in the guest room shortly after. We had a great Memorial Day weekend together, including an off-road wheelchair trip to the dog park and a brief stint at the Falls Church Memorial Day Parade/Festival (followed by a long recovery nap!)

On Saturday night we hit up our favorite spot in Vienna for dinner with Mama Marian's friend from high school, Sue Ellen, and her husband Walter. It was hilarious to get the other end of some high school/college summer/newlywed stories and to hear about the "forgotten" drive to Asia as well! :) By the way, Ellen, we have been inhaling your cranberry scones; they are AWESOME!

So, I get Mama Marian for the whole week while Pops returns to CT for work! We will be driving back on Friday sometime and will be back in time for Tracy Sigman's memorial service this Saturday.

Mom is doing well overall, but continues to have daily falls with her walker. Jody and I think she may have a break in her right foot that is making things harder. She fell on Tuesday at home and is pretty bruised up all along her right side. Her foot has been really swollen this weekend and I noticed last night how black and blue it is on the inside. So, when she wakes up today we will make our way to Fair Oaks Hospital for some x-rays. Mom is in agreement as she has been feeling a lot of pain in that leg and foot and is "so sick of hurting", as she has said with each fall.

She also continues to have some very general confusion most of the time... like a delay in processing or word finding. It is hard to describe and I know that it is frustrating her quite a bit. However, it seems to be okay for the most part. I think the most frustrating piece of this is our never-ending quest of "why?" Some things just don't make sense because they have no clear-cut cause and effect. We don't know what is happening as a result of the tumor, effects from the surgery, lack of rehabilitation/atrophy, side effects of medications, seizures, or just plain exhaustion. And, sometimes I guess it's okay not to know why but you don't want it to be the time when you could have, would have, should have taken the steps to get it "figured out". It's hard to know when that time is versus any other time and that, in itself, is stressful.

I do know that Mama Marian really cannot stay at home by herself at all for right now, which even she has admitted to recently. The falls are scary and painful and are becoming too frequent. Lifeline may eventually be a great "peace of mind" tool but having someone there at all times is really going to essential for the time being. This is not an easy thing to do for any of us. I totally get Mom's need for alone-time and some sense of independence. In fact, I think we may have all been "getting it" for longer than we should have been. Again, it's hard to know when... There is some relief in knowing that this continues to be a journey of huge ups and downs and that harder things may subside as quickly as other things have. What goes up must go down and what goes down does come back up when we least expect it.

Friday Night at Wolf Trap for Garrison Keillor

Mama Marian made the very long journey from Boston to Virginia this week. She had an appointment and infusion on Thursday after spending Wednesday night at the Hope Lodge. Dr. Drappatz feels that Mom's strength is excellent (however, Dad continues to remind her that he ALSO feels her coordination could be much better with more PT). She does not have another MRI until July as her past two have shown so much improvement.

So, Dad and Mama Marian got on the road early Thursday afternoon to come see their favorite daughter. They spent the night in New Jersey and left the next morning for Virginia. Unfortunately, the Subaru's A/C died out somewhere along the line on day 2 of the drive and they suffered the remainder of the journey in the heat.

We took full advantage of Mom's handicapped access and got front and center parking at Wolf Trap on Friday night, along with a very quick in and out of the parking lot. I packed what food I remembered from what Mom calls our "first date with Jody" and we had a very nice dinner on the lawn while the sun set. It was another perfect night under the stars for "A Prairie Home Companion" and we not only enjoyed Garrison Keillor but also relished in the entertainment on the lawn chair next to us... a drunken old lady downing glasses of wine and cheering like it was a Metallica concert. I'm really not quite sure which show was better!

Tucked Away at Hope Lodge Tonight

Mama Marian and Papa Jim are staying in Boston tonight at the Astra Zeneca Hope Lodge, one of the 18 American Cancer Society facilities that provide "free accommodations to cancer patients and their families whose best treatment options are far from home". This was the first time that they have been able to get into the Hope Lodge and are looking forward to having a relaxed two-night stay in Boston without having to worry about driving two hours there and back in traffic. Mama Marian ditched me earlier in the evening when her dinner arrived, as they called from a restaurant in Sturbridge, Massachussetts. They will meet with Dr. Drappatz and Dr. Wagle (Tail) tomorrow before the infusion and will have a chance to do some much-needed R&R afterward.

This has been a challenging week and I apologize for not updating the blog sooner. I'm actually in bed with Indiana curled up at my feet and am about ready to pass out, but thought I would get some news out beforehand. Mama Marian has been a little unsteady on her feet over the past several days and took a pretty hard fall yesterday afternoon. Thanks to Mom's home health care friend, Beth who comes during the week in the mornings, I knew that things were a little off so was able to call the next door neighbor and ask her to check in on her. Laura went right over to find Mama Marian tucked in bed sleeping. She was okay, but when she finally did wake up around 6pm, she called me and told me that she had taken a pretty bad fall earlier and was in some pain. She has apparently been pretty sore lately anyway (possibly a side effect of the Avastin?) but this was very scary because it took her about an hour to find a way to get herself to a standing position. I'd been calling all day and was so worried about her; she always calls in the early afternoon these days and always picks up after a few tries. I continue to be amazed and grateful to the people around us for being there to step in and help out. Laura was able to check in on Mom and get back to me and that was pretty awesome.

So, needless to say I spent some time today talking to the people at McLean who hooked me up with the people at Lifeline (yes, those would be the "I've fallen and I can't get up" people). Mama Marian will soon be outfitted with her very own pendant or bracelet with a magic button that will access one of two intercoms in the house if something like this happens in the future. I think it will be somewhat like having OnStar at home... minus the whole navigational thing.
Anyway, the docs will meet with Mama Marian tomorrow and try to figure out what is going on to make her so unsteady on her feet, what might be causing the achiness, and some significant decrease in her appetite as well.

And, after all of this, Mama Marian and Papa Jim get to come visit us on Friday! We will hopefully get to hang out with Sue Ellen, mom's high school friend around the corner, as well while they are here and will be spending Friday night on the lawn at Wolftrapp with Garrison Keillor! Thank you everyone for all you do and for all your thoughts and prayers and goodnight to Mama Marian and Papa Jim... :)