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... :)

Happy Mother's Day, Mama Marian!

Sigh... I wish so much that I could be home to make Mama Marian blueberry pancakes as she dictates the recipe to me and hang out on the deck with her and with Dad. However, they will be here soon to visit their Grand-dog, Indy, and to see Garrison Keillor at Wolf Trap on the 22nd. And, after that, we have Chincoteague to look forward to!

Mama Marian went for her bi-weekly Avastin infusion and check-up this past Thursday and all very well. Dr. Drappatz wants to phase her off the Keppra because she will be at maximum dose of Lamictal for her seizures in a couple of weeks. Also, Keppra (especially the generic Keppra) is known for some horrible side effects like depression and confusion. In addition, Mom is now off the Decadron (her steroid) completely, which is a celebration in and of itself!

Every day has been a little better as far as I can tell, with regard to Mama Marian's memory, confusion, etc... and, according to Mom, she hasn't had a noticeable seizure for several days now. She informed me just yesterday that, of all things, she is having difficulty sleeping! I'm sure that this is somewhat of a relief, however, because she's been so frustrated with the exhaustion that has sort of taken her over since the surgery.

Fatigue and exhaustion are typically so integral to cancer anyway, but especially so with brain tumors.

"Fatigue is a common complaint among people who have been diagnosed and treated for different varieties
of brain tumors. Unlike the usual physical and emotional sensations of “being tired” that a healthy person
might experience, fatigue is a debilitating, persistent loss of energy that is not relieved or improved by sleep.
This unusual, whole body weariness can have a profound effect on a person’s quality of life. Fatigue can
vary in intensity from day to day, or at different times of the day. Its effects are unpredictable and may last
for years following brain tumor treatment. Patients affected by fatigue describe overwhelming feelings of
exhaustion that interfere with their ability to carry out daily activities."
-Brain Science Foundation

So, I think a break might be welcomed, especially since the sun finally decided to come back out!

Dad also informed me that Dr. Drappatz will likely have the results from Mom's MGMT test will be back in time for the next appointment. The main idea behind using this test, however, was to determine whether or not she might benefit from Temador, the chemo drug she was on during and shortly after radiation treatment. They are fairly certain that Mama Marian does not have the genetic makeup that is typically responsive to this drug and the test will most likely just be confirming a conclusion that has already been made.

In the meantime, I'd like to wish my mom a very happy, exhaustion-free Mother's Day! I miss you Mama Marian and can't wait to see you soon!

April Showers Bring May Flowers... Right?

Things seem a bit upside down, I must say. It's been raining for days and days and days and... yeah, for a while now. There's too much darkness and too much gloominess for any time of year, let alone May. Where are the new beginnings, early morning birds singing, warm spring afternoons?

Mama Marian has always comforted me with the words "this too shall pass". No matter how badly things seemed or felt, that phrase has been able to adjust things just so... in a way that makes them a bit more bearable. It helps me to readjust my focus and to remember that problems are just a part of the process, segments of a journey, parts of a greater whole.

This may sound naive and sheltered, but this is truly the first time in my life I have ever seriously doubted that something will pass. And I realized today how much that fear can paralyze a person. Of course the sun will come out again and of course the rain will come to an end, but we won't see it until the fear of its permanence can be released. Sometimes we get so stuck in our thoughts, in our perceptions of things, that we force time to stand still and resist the very changes we want so badly by doing so.

I have to apologize to my mom for my past couple of posts and for the way I've been for the last week. I think that terror, that frozen-in-time fear rooted its way inward recently and led me to say and do some things I regret. Thankfully, the nature of the blog world permits you to edit things out, but the surrounding universe is not quite the same. Last week was hard, really hard, and I am sorry for saying some things I should not have; for telling stories about how things were in a light-hearted way that, at the time, made things feel a bit less scary.

The physical changes and losses along this journey are painful and sometimes gut-wrenching to see and to think about, but the mental/emotional pieces that are so much of who my mom is and has always been... the idea of that being changed forever feels unbearable. The fear of it and everything else, however, makes itself into a little shell around everything frightening and prevents the clouds from breaking away and letting the sun in sometimes.

Anyway, Mama Marian has been on the Lamictal for almost a week now and, although she is still noticing some seizure activity, it is less and she is beginning to sound more like herself on the phone. She goes to Boston tomorrow morning for another Avastin infusion and appointment with Dr. Drappatz and Dr. Wagle (Tail). The tumor is smaller and so they will not be doing another MRI for a few weeks now. In the meantime, Mama Marian is busy again with home-based PT, OT, and home health. She and Dad are planning on visiting over the weekend of the 22nd and we are going to see Garrison Keillor at Wolf Trap, just like we did five years ago for what Mom calls "our first date with Jody" (aka- meet the parents). AND... we have reservations for Chincoteague this summer! We found a perfect handicapped accessible house on the water with a huge deck and even a separate room for the very grown up two-year-old Lorien!

So, I won't wait around grumbling anymore about the weather and I will trust that it, along with some other things, will pass. The sun will be more than welcome upon its return to the East Coast when it does show its face again I will keep my eyes open for it. And tonight I may even enjoy a good night sleep with the rain pouring off the roof!

Home from the Hospital

After a 24 hour hospital stay at Brigham and Women's in Boston, I was able to bring Mama Marian home last night. The seizure evaluation and EEG showed that there were not any seizures, but the "background brain waves show findings that were concerning for possible risk of seizures". Although this remains confusing, the doctors have explained that Mom appears to be having simple partial seizures (aka "focal" seizures) that originate in the part of the brain where the tumor resides. These seizures do not cause her to lose consciousness and, oftentimes, she is even unaware that she is having them. However, her leg, foot, arm, hand, etc... on the right side often begin to tremble and her emotional state changes afterward. This is probably the most difficult of all, because it is unpredictable and leaves us feeling disconnected and more unsure than ever.

Mama Marian was discharged with a new medication called Lamictal, which is both a seizure medication and mood stabilizer. Typically it is added to a patient's regular seizure meds to prevent this type of partial seizure that she has been experiencing. We picked it up on our way home around 11pm last night and so we are not quite sure how effective it may be yet.

Mama Marian and I had a great trip home from Boston last night. We stopped by Pat and Steve's to pick up Indiana, where he was frolicking in dog heaven (their backyard, big dog-approved house complete with cousin dog) and then continued on our way to Connecticut. Mom wanted to stop at the Picadilly Pub in Sturbridge on the way back so we had dinner there and then stopped by the nearby Roy Rogers to access their vending machines. It has become tradition to stop and buy Jody some 25-cent plastic monkeys from the machines there. We have yet to collect all ten.

Mom is sleeping right now as Indy brings her his toys one by one in hopes that she will wake up and play with him. We noticed some small seizure activity in her right hand this morning but otherwise things have been okay.

On a very sad note I learned yesterday that Tracy Sigman, a family friend, died Thursday afternoon after a two year battle with pancreatic cancer. Her daughter, Beth and I have been friends since we were little and she has been a huge support for me along the way... even up through Thursday morning as she checked in with me to see how Mama Marian was doing. Beth and family, you are in our thoughts today. I wish I had something better to say, something that would make this more "okay" for you. I know that it must at least be a relief to not have to see her in pain, uncomfortable and, most of all, just not herself. That, perhaps is the most disconcerting of all... losing someone before you have lost them, knowing that you will have to lose them all over again... waiting, grief, waiting, bits of sunshine, fear, grief, waiting, loss... As Beth said to me a few months ago, I will take any good days with my mom I can get. And, in between, you just do what you can do.

A Sigh... of Some Relief

First of all, thank you. Thank you to all of my/our friends, family, co-workers, supervisors, therapists (professional and as needed), and neighbors. You all continue to show up out of nowhere and swoop in when we need you the most and even when we don't realize how much we need you.

The past couple of days have been challenging to say the least. Throughout the day Wednesday Mama Marian progressively became less and less of herself and more and more confused.

After her nap in the afternoon, I helped her to put her prosthetic brace on her right foot and calf. As her ankle and foot straightened out into place, her foot began to pulsate as it had months ago when we initially met with the neurosurgeon. This was explained to be a neurological sign called Clonus, an involuntary and larger movement than the typical reflexive response of someone without a neurological condition. The Clonus continued for a few minutes and then subsided again shortly after, but Mama Marian continued to feel odd and "shaky".

By the time Dad arrived home that afternoon, Mom was having a significantly harder time with cognitive processing and completing sentences. It was terrifying and it felt like we were losing her one moment at a time. We were did not know what was going on at that point in time.

Fortunately, our many emails to Abigail Ciampa, the P.A. on Mom's team at Dana-Farber, were eventually followed up by a phone call from Dr. Drappatz, the neuro-oncologist, at 9:30. He told me that he was very concerned and wanted her to come first thing in the morning for an MRI, or that night to the ER if things continued to worsen. Dr. Drappatz suspected that the tumor was possibly growing or causing swelling or even causing a bleed inside her head.

So, we scheduled a morning MRI and follow up appointment for as early as possible the next morning in Boston.

We arrived at Dana-Farber and met with Dr. Drappatz and Abby a few hours after Mom's MRI at 8am. Dr. Drappatz gave Mama Marian some basic neurological tests and was able to observe some of the concerns we had been reporting. Mom could not remember certain words, had difficulty accessing some terms, and was just generally slower in responding.

However, Dr. Drappatz explained that the tumor has actually continued to show shrinkage on the MRI. There was very little swelling in comparison to past scans and the doc was very pleased with Mom's response to the Avastin overall. He suspected that she has been having increased seizure activity from the tumor and possibly resulting from the initial craniotemy in November. The seizures are most likely reverberating all over her brain and affecting the temporal lobe region, thus causing her to have cognitive and speech deficits in between and during the episodes.

We were relieved and thrilled to have an answer that did not involve growth or swelling of the tumor. Dr. Drappatz had Mama Marian admitted to the adjoining hospital, Brigham and Women's, where she is currently. They glued 28 electrodes to her head and monitored her through an EEG overnight to determine the seizure activity and carefully adjust her anti-seizure medication, Keppra.

Mama Marian and I just met with the Epilepsy doctor (Dr. Dinkin) on the unit and his crew of residents in tow. She quickly looked up at them and collectively referred to them as "House", as Mom's been watching the show religiously since cable TV entered the house after Christmas. As Dad continues to remind her, it's a little ironic that she became obsessed with a hospital show of all things, but now we're all a little attached as well.

Anyway, the docs explained that Mom is having seizures on and off. He also induced the Clonus in her right foot and reported that it was sustained for a time yesterday evening. They are going to add Lamictal to the Keppra regimen and continue to monitor how she responds. The docs also explained that the seizures are likely from the tumor itself. Although it is stable and even a bit smaller at this point in time, it continues to wreak havoc all over her brain. In addition, the scarring from her brain surgery in November may be "tickling" parts of her brain and inducing irregular activity.

Mom is making more sense today and we are able to laugh a bit about some of the things that have hapened over the last couple of days. The deficits from the seizures will hopefully be short-lived and begin to lessen as the seizure activity is controlled.

We may get to take her home sometime today. Currently, we are waiting on the doctors to consult, start the Lamictal, and then let us know how they would like to proceed. I will be sure to keep you posted as I am able.

A Hard Couple of Days

Mama Marian is sleeping in today and I am sitting at home with Indy on the couch, waiting for a call back from the doctor. Whomever it was to first say that this ride is like a roller coaster, I could not agree more.

After Mom's Avastin treatment three weeks ago she tapered off the Decadron (steroid). It was a ten day taper and so she ended it completely on Sunday the 19th. After that treatment, there was a week of amazing progress for Mom and she was actually doing so well on her own that the in-home services were discontinued through McLean and she was switched to outpatient PT.

However, this past week has brought changes that are hard to explain and, quite frankly, impossible to understand as more things continue to be along this journey. Mama Marian has had some difficulty with processing and memory over the last week and also began to struggle with muscle coordination and movement again. Word finding has been something that has been difficult since almost day one, as it is a symptom of many things... anxiety, exhaustion, side effects from the meds, and swelling from the tumor. We are hoping and praying (and I've done a little bartering of my own with God and whomever else will listen) that it's not the tumor. Mom's PA and neuro-oncologist are concerned, though, and want her to come for an MRI and follow-up appointment on Friday. I've also been talking with them about significant swelling in her right foot and ankle. Apparently, one of the side effects of Avastin is blood clotting. When Mom wakes up I intend to see how she feels about going to the ER for an ultra sound of her foot, as recommended by Abby, her PA. I'm sure she'll be less than thrilled with the idea.

So, we wax and wane all over the place these days. It makes happy days a little scary and sad days pretty unbearable. Last night Mom had a fall again in the bathroom. This was the first one in a while and, of course, they are always pretty frightening for everyone. It was kind of the culmination of a couple of days of worry, watching, waiting, etc... and I think Mom, Dad, and I just sort of lost it after that. The theme for yesterday seemed to be "This is the hardest thing we've ever done. Who knew anything in life could be THIS painful?" Mama Marian and I decided last night that we don't think we ever really believed that this sort of thing just happens to someone. I mean, you see it and you hear about it, but you don't realize how unreal it is until it's in your face 24/7. It makes you feel a little guilty and little blindly stupid for "the way you were" beforehand... not that anyone can change that or even should change that.

On a brighter note, Mama Marian and I took Indiana (my dog who came to visit) to the dog park in Avon yesterday afternoon. It was the most beautiful, heavenly place for dogs and people and the three of us had a lot of fun. It is bittersweet watching Mom enjoy the weather and take so much pleasure in being out in nature, but unable to walk on her own across a field or sit down in the grass, take a walk, or swim with her favorite grand-dog. Maybe we will go back there today if she feels up for it. We also spent time yesterday on the deck looking through all of the old photo albums, some I brought from home for her that we had been working on scanning and putting into new albums. I will be sure to upload some of them as soon as I can.

I will also do my best to post as the week goes on and as things change. Sometimes it's difficult to write when things are not going as well, but in the end, it also helps to not have to say it aloud over and over again too. I hope to have some good news to pass along later this week.

Another Thursday, Another Infusion

Well, Mama Marian proudly completed another round of bi-weekly Avastin today at Dana Farber. Dad took her to Boston this morning for her check-up, the usual blood letting routine, and Avastin infusion. They were able to go up in the morning and come back this evening, as Mom does not have another MRI for six weeks.
Dad said that that Dr. Wagle (Tail) and Dr. Drappatz are encouraged by Mom's regained strength and movement on the right side and Mama Marian informed me herself that she can tell they are very pleased with her progress. She and Dad met with Aunt Jenna and Brett after the appointments and had dinner in Sturbridge on the way home. They both sounded exhausted tonight, but are obviously getting this trip down to a fine science! I missed being there today so much, but received regular updates throughout the day.
Mama Marian continues to discuss her summer plans and upcoming visit to see her favorite daughter and grand-dog in DC soon. I hope to be back home again within the next couple of weeks as well to hang out with the rents, catch up on all the good food that is constantly coming into that house, and spend some quality pajama time with Mama Marian!

Twists and Turns...

These have been two fairly good weeks for Mama Marian. After the positive news about her tumor shrinkage and another Avastin treatment during the latest trip to Dana Farber Mom's movement and morale have improved quite a bit. She had another week or so with in-home PT, OT, and nursing but was recently discharged from home-based services because of her increased strength and associated level of independence. So, she is now responsible for keeping up with the many exercises, techniques, and strategies that have been taught to her on her own. These include the fabulous new bath set-up, the wheelchair wheelies I've been teaching her, and the "Ethel Walker" (yes, that's what she's named her walker) transfers from couch to standing, standing to chair, standing to bed, etc...
Mama Marian is now free from Decadron, the dreaded steroid/face plumper that she loathes so much. She maintains 2,000 mg of Keppra, an anti-seizure drug, though and there have been (fingers crossed) no seizures in several weeks. She complains of "chemo brain" and has difficulty lately with word finding. This, as one can imagine, is not easy for a journalism major and a fine conversationalist, I might add. And it's especially hard to hear when I'm 400 miles away. Therefore, I am so unbelievably grateful to the friends and family who have been able to drop by, check in, etc... with even a moment's notice (Ahem, May!)
I cannot believe that tomorrow is the fourth Avastin infusion at Dana Farber! Mama Marian "aka Grand-Mere" has been fortunate to have her favorite granddaughter, son, and daughter-in-law with her this week and they just may get a chance to meet her doctors for the first time tomorrow as well.
It's funny how much we crave what was, for so long, just normal in life. I have a voicemail on my phone that I keep listening to over and over again from Mom. A few months ago I would have sped through it, deleted it, and called her back. These past couple of days I've replayed it just to make me smile again, as it sounds like the Mom I've known for years; no hoarseness or exhaustion in her voice... just warmth, humor, and... well, normalcy. Whoever thought I'd do anything, anything at all, for things to just be normal again.

Great News! :)

So, here we are at Dana-Farber for Mama Marian's fourth consult, second MRI here, and 3rd Avastin infusion. As usual, the entire day is an arduous process of sorts, complete with multiple blood draws, imaging, and plenty of anxious waiting. Fortunately, we spent last night at Hotel Indigo in Boston and are staying again tonight, so we get to skip out on the double two-hour Mass Pike experience. Unfortunately, I had to share a hotel room with Dad, the human whale (who huffs and puffs out of his blow hole during the night in an unnaturally persistent rhythm) and Mom with her gasping snore/yowl. Quality of sleep left much to be desired, but I plan on making up for this immediately upon my return to the hotel this afternoon.

After four plus months of getting bad news, we were all a bit on edge today before the consult with Dr. Drappatz and Dr. Wagle (Mom calls him "Wagley Tail"). However, the results of this morning's MRI were delightfully optimistic and, for once, we left for the infusion with smiles all around.

Because of the Avastin treatments, Mama Marian's tumor has shrunk by 50%. It may even shrink smaller still, as it has only been one month of treatment thus far. Avastin is now very close to being FDA approved for the treatment of brain tumors. Since the tumor is so close to the motor strip in the left hemisphere of Mom's brain, it will likely continue to cause her difficulty with the right side of her body. However, it will hopefully continue to improve with future treatments.

Dr. Drappatz explained that Avastin typically works for brain tumor patients over a six to nine month period; however it may even be longer since it has already shown so much improvement with Mom. As we have noticed over the past few weeks, Dr. Drappatz and Dr. Wagle note that Mama Marian's neurological functioning has improved and she has gained some strength back in her right arm and right leg. It is imperative for her to continue regular physical therapy at this point in time.

Also on a positive note, Mom will be tapered off the Decadron over ten days. This means her "big fat cheeks" that she has been lamenting over these past few months will begin to disappear as the swelling goes down from the steroids. We have also noticed (upon VERY close inspection by me) that Mama Marian is sprouting new locks of hair atop her head where we were told new hair may not grow back. Mom and I spent some down time this morning in the hospital gift shop and have purchased her a lovely little hat to replace her old lady driver's cap. I will even post a picture of her from a few minutes ago in the waiting room... looking lovely.

So, we are hoping for a good afternoon to finish off such a happy morning. Mom is in the infusion room for another few minutes while Dad and I chow on mall court sushi and hang out. We spoke with the doctors about Mama Marian's reaction to the infusion two weeks ago... the shivers, chest pains, etc... and they are planning on reducing the speed of her Avastin drip as well as treating her with some cortisone beforehand to treat allergic reaction.

I will definitely post more as I can throughout the next couple of days. This is definitely a fitting beginning to spring, however, and I will take all the good days we can get!