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!

Drop Mama Marian a Line...

I am going to try to use this post as a sort of guest book for people to comment and say "hello" to Mama Marian if they would like. There will be a link to this in the side bar to make it easier to access.

Comments

A few people have let me know that they are not able to put comments on the blog. I changed the settings (I think) so now anyone can post comments, not just registered "blog followers" (that sounds slightly cult-like). Anyway, sorry about that... it was a default setting I had to change. I am also going to try and add a guest book to the blog that does not entail giant flashing ads for cellulite cream and things like that. So, please post in the guest book if you would like or continue to comment under the posts. Now you should be able to comment away...

The New Normal

Mama Marian often remarks on how she's had "a little taken off the top". She also wonders if they just keep confusing her records with another patient's... again and again. It makes me laugh every time, but I must admit I often feel the same way; like someone is just waiting around the next corner to tell us it's all a big mistake and that we can just go home.

So, what we now refer to as "the new normal" is a bit like an evil groundhog day. We keep waking up to the same nightmare, but with some completely inconsistent, unpredictable twists on many of those days.

Mama Marian awoke on Friday after a long Thursday at Dana Farber, only to return to the hospital later that evening. As I mentioned in the last post, Mom needs to monitor her blood pressure every day. Not only do delightful things like high blood pressure run in the family, but the Avastin further complicates this by causing an increase in blood pressure as well. So, Mama Marian was directed by her nurse to the hospital on Friday afternoon after a pretty high reading.

This, after a full day of exhaustion and pain, did not sit well with Mom and she was jolted directly from stage 3-bargaining and stage 4-depression to stage 2-anger. I've personally been wondering why it's taken her this damn long to get there, as I hit second base fairly quickly and seem to land there more than I would like these days. However, Mama Marian, consumed with rage, was escorted to the ER despite her protest. I'm sure the fury complemented her high blood pressure well.

Anyway, May took Mom to the hospital, where they proceeded to take more blood from her. I'm beginning to notice that being a cancer patient not only involves being part-guinea pig, but also part vampire. Fluids are constantly coming and going, regardless of what the problem may be.

Mama Marian came home after a few hours and Dad has returned to his blood pressure monitoring post with an all new digital machine. Mom is currently bargaining with her nurse at McLean for a few hours to herself every day. Her nurse would like for someone to be around at all times. Well, I think we all would like that in some respects. At the same time, it's too much and there has got to be another way. Mama Marian is about even on the introvert/extrovert scale and has always needed time to herself. Mom considers this one of the most important "quality of life" issues and I'd have to agree.

On the bright side of this, everyone who has seen Mom over the last week or so has commented on how well she is doing and how her motor control and strength have improved. We are looking at a beautiful house in Chincoteague to rent for a week this summer. Hopefully, Jeff, Dou, and Lorien will be able to come and Jody will be able to pull himself from his work for a few days as well. South Carolina does not seem to be in the cards as we had hoped. It seems likes a bit too much right now, but we now have our sights set on the summer... some blue crabs, wild ponies, and mosquito-filled sunsets on the bay.

2nd Avastin Treatment/Dana Farber Consult #3

Dad and Mom drove to Boston early this morning for Mama Marian's second Avastin infusion and for a follow-up appointment with Dr. Drappatz and Dr. Wagle. It was the first Dana Farber visit that I was unable to go to and this was more difficult than I would have thought. I had a dream last night that I met Mom and Dad at a gas station on the way to Boston. Mom walked up to me, sans walker, with a full head of curly hair and a smile on her face. She was better.

Dad filled me in throughout the day today while Mama Marian was in treatment, getting her blood drawn, etc... It was a hard day for Mom as they had a very difficult time getting the infusion started and, once it was started, the drip was far too slow so they had to start it over again. After already having her blood drawn earlier, I can't imagine this was an enjoyable experience.

Mom's blood pressure is apparently increased by the Avastin and the doctors are concerned about keeping it in check. It was 156/99 today at her check-up and so her doctors have prescribed her with Norvask and instructed Mom and Dad to buy a blood pressure cuff to keep it monitored. If it goes to 150/95 they were advised to contact the doctor.

Mom's strength has increased in her right arm and the doctors are hopeful that she is responding well to the new treatment. The MGMT results are not back from the lab yet, but it seems safe to say that the Temador has not worked thus far and will most likely just be discontinued. Dr. Drappatz urged Mama Marian to continue working on her PT exercises, even though she is so tired all of the time. So, if you stop by to say "hello", make sure you drill her on her regimen as well!

Dr. Drappatz presented Mama Marian with the results from the genetic testing done on the tissue taken from her tumor in November. They had sent the tissue to Arizona for testing and just recently received the results. In prognostic terms, the test revealed that the tumor is in the "intermediate" category for survival. Apparently, prognosis charts show this level to be equivalent to around two years, but Dr. Drappatz warned Mom and Dad that these results are very limited and often not too helpful. No matter what number we are given, time just never feels very comforting. It's never enough.

Mom was apparently exhausted today on the ride home from Boston. She waited outside the hospital in her wheelchair under the heat panels, but was shivering the entire ride home. She was in a lot of pain after the treatment, most likely due to the side effects of the infusion. Fortunately, there has not been much physical pain along the way, but she had terrible chest pains and a severe headache this afternoon/evening. Dad told me that he bundled her up and she finally fell asleep at some point on the way back and he had to carry her into the house. It was too exhausting to go up the stairs so Mom asked to sleep on the couch downstairs when they came in from the car.

I am going home on the 6th to stay for a week. I will be there for Mama Marian's MRI and fourth Dana Farber consult on the 9th. If I could be anywhere in the world, I would be home with her tonight, though. And with my dad to take care of the person who is taking such good care of Mom.

Thank you, everyone, for all that you do for my mom, for me, and for my entire family. It means more than you know to all of us.

Brighter Days...

There have been several good days in a row this week and I have no words to express just how meaningful each and every second of these have been. Mom’s return to Dana Farber was another whirlwind ride and she, Dad, and I went from a very tearful morning to the best afternoon I can remember in some time.

After Mama Marian’s appointment and the first Avastin infusion we climbed back into the car for the ride back to Connecticut. Thanks to Pat and Steve, we gorged ourselves on sugar cookies and brownies and, on the way home, stopped for dinner at Abigail’s. Mom remarked several times on how good she felt and her spirit was back in full form that evening. We had more brownies and cookies, watched reruns of House, and I got to yell at mom and dad for talking through the show. This really cracks me up because it’s THEIR show and they talk through it and then talk more by asking questions about what they’ve missed. It was a delightfully normal Strange family evening and I realized when I went to bed that night that, for the first time in months, I had forgotten that mom is sick.

Friday morning Jean Miles came from McLean for PT and Mama Marian had a grueling hour of doing all the things we take for granted... putting her foot in the right position to pull herself up on her walker, transferring her weight equally, and getting in and out of bed.

At noon mom’s OT person, Mary, came and helped us further assess how we can make changes around the house to help Mama Marian be more independent. I have informed her that she needs to demonstrate to us that she can be left alone without throwing parties, trashing the house, falling off the couch, etc... before we agree that a home health person does not need to be with her all day. :) She's not thrilled about the idea of having someone around all the time when Dad is at work and the rest of us are away, but she can get a little out of hand with her walker slinging and spider monkey antics.

She continues to feel better and has more energy. As you can see in the picture above, we bundled her up on the deck yesterday so she could be outdoors and with her birds again. And over lunch, we made plans to go to South Carolina for Lorien's 2nd birthday; something we have talked about for months but haven't been so sure about in these past few weeks. Mom has her next Avastin infusion on the 26th and she and Dad will fly down to DC to meet me. From there, we will go to Sumter for a few days to be with Jeff, Dou, Lorien, and some much needed warm weather!

Back to Dana-Farber and Forward with New Treatment

As promised we are confronted again with change and decision… at least there are consistencies in somethings along the way.

Dr. Drappatz, the neuro-oncologist at Dana-Farber we met two weeks ago, has offered us more information and another direction. Dad spoke with him on Monday night regarding plans for today’s follow-up appointment. The tissue block was received from UCONN for the genetic testing, but the results will not be in until sometime next week. Regardless, it seems our waiting and hopes lie elsewhere now, as it has become increasingly apparent that mom is perhaps not one of the 50-55% of people who respond to Temodar and radiation treatment. Another test is just that… another confirmation that we need to look elsewhere; and thank God we have that option.

A second resection, Dr. Drappatz explained, is most likely going to create more edema and swelling, may very well cause more and permanent loss of motor functioning for mom, and the gliadel wafers do much of the same with other unpleasant side effects. Ultimately, the vaccine takes time to create. Time, at this moment, is not on our side. Because of the recurrence of the tumor, we need to move faster and sooner to look for what may work to inhibit its growth.

So, instead of sending Mama Marian for the SPECT recommended last Friday, we have landed here at Dana Farber and are going a different route instead. The last time we came for a consult, the MRI showed that the tumor looked larger; however no one could be sure whether this was an effect of the radiation or the tumor actually growing in size.

At 8:00 this morning, mom had another MRI with profusion done and then at 11am we met with the clinical fellow, Dr. Wagle, and the neuro-oncologist, Dr. Drappatz, to follow up. As suspected since receiving the PET scan results, Dr. Drappatz informed us that the tumor has grown significantly within the last few months and has not responded to the radiation or the chemotherapy drug, Temodar. Upon initial imaging, the tumor measured 19 cm. x 19 cm. The results of this morning's MRI indicate that the tumor has grown 30 to 40% and is now measuring 32 cm. x 28 cm.

The front of the tumor is what is apparently causing most of mom's neurological problems, as it is infiltrating the motor strip on the left side of her brain. If she was to undergo a surgical resection again, this part would be left behind. However, the other options may actually improve her motor functioning and tackle this area as well as the rest of the tumor.

So, we were presented with two options this morning. First, mom would be eligible to start a phase II clinical trial with Avastin and LBH. However, she would have to wait to start treatment until 60 days post radiation. As she had her last radiotherapy treatment at UCONN on the 25th of January, she would not be able to begin the trial until the 24th of this month at the earliest.

Because the tumor is so aggressive, Dr. Drappatz recommended that we do not wait for the clinical trial and encouraged us to start Avastin as soon as possible. Fortunately, we did not have to wait long and mom's nurse here, Abbey Slate-Ciampa, was able to squeeze mom into the schedule for infusion today. So, after some more blood work, paperwork, and a run to the food court for lunch, we returned for the first of her Avastin treatments... and a much needed nap for the momster.

Avastin is not yet FDA approved for the treatment of GBMs; however it is in stage II of clinical trials and has reportedly been very effective in 50-60% of brain cancer patients. The risks and side effects are different from chemotherapy and mom only needs to go for treatment every two weeks for 20 to 30 minutes. There will most likely not be an nausea or additional exhaustion like there has been with the Temodar, but there is some vascular and bleeding risk. However, Dr. Drappatz informed us that the tumor currently has no internal bleeding according to the MRI and PET scans, and this makes these risks somewhat lower for her.

So, we begin another cycle and hope that this one stands apart. Like mom said today and we lamented so many times before in the hospital, it's been Groundhog Day in the worst sort of way... we could use a break in the clouds.

Grandma Ruth's Memory of Mama Marian's First Week

CT/PET Scan Follow-Up with Neurosurgeon... a hard day.

Dad took Mama Marian today to see Dr. Senatus, her neurosurgeon. She had a PET/CT scan yesterday afternoon at UCONN that looks at the tissue's metabolic activity in the tumor and provides images of its shape and size.

After an hour and a half of anxious waiting for the images to load on the computer, Dr. Senatus explained that it appears the tumor has recurred. Perhaps it is not responding to the infiltration of radiation and poison we've been sending its way for three months, as we had hoped.

In order to be absolutely positive that the tumor is growing, Dr. Senatus has ordered a Thallium SPECT to provide 3-D images of her brain and to look at cross-sections of the tumor itself to determine localized function (where the growth is most aggressive).

There are a few options to consider at this point in time, including surgical resection of the tumor, similar to the awake craniotomy Mom had in November, but this time she would not have to be awake. Dr. Senatus could go back in and extract more tissue from the tumor if it is possible to do so safely without resulting in severe loss of mobility. Mom would have to decide beforehand how much she would be willing to risk losing.

The resection might involve placing gliadel wafers into the vacant spots from which the tumor tissue is removed. These wafers are cut to fit inside these areas and bathe the tumor in chemicals that provide direct chemotherapy. They dissolve on their own and, as they do so, they release high doses of BCNU to destroy tumor cells. However, they can cause seizures, infections in the brain, and swelling.

Dr. Senatus is also considering a very new treatment, just entering phase II of clinical trials. He has been working with a colleague from Harvard, who is now at UCSF, on developing a GBM tumor vaccine. If he was able to obtain enough tissue from the tumor, he could use it to develop a vaccine specifically for her. It would be injected after development and could cause her immune system to attack the tumor cells. This treatment works on certain GBM patients whose tumors have a certain type of mutant protein that gets stuck in the "on" position, resulting in freakishly unrelenting cell division.

Above the cellular level, this journey remains unpredictable and, quite honestly, along the lines of torture on some days. Thankfully, spring is coming and mom's tulips and lillies will be coming up before she knows it. We could use some reminders of all that is beautiful in this world... some good regeneration and natural growth after a cold, harsh winter.

One day, a car fell out of the sky...

And hit her on the head...

That would be ONE of Mama Marian's most profound declarations for how and why this thing came about. Quite honestly, it all happened just about that suddenly.

Every time we meet with a new doctor, have to explain it to a friend who calls out of the blue, or try to remember it again for ourselves the absurdity and senselessness of it all just reemerge. There were no signs, we have no "oh yeah" moments where it begins to come together, and there is nothing we can point to or blame. In some strange way, that makes things worse but, considering the alternative, I can't quite say that it does.

When Jeff came home from Iraq this September we went down to see him, Dou, and Lorien at their house in South Carolina. Around the 24th of October mom and dad flew in to Columbia and Jody and I drove down from Virginia. We had a great weekend, minus Mama Marian taking flight off the front porch with Jeff's dog Bete in the lead one morning.

When mom went back to work that next week she began to fall and started having difficulty moving her right leg and foot. She was dizzy and off-balance, so she called the doctor, wondering if it was the Levothyroxine she had just started taking for her thyroid. Dr. Rosenberg, whom we all joke about being convinced every spot, cough, and misaligned hair is cancer, sent her for an MRI and discontinued the thyroid med.

Mom's MRI came back showing a 1.2-cm "focus of abnormal signal in the medial posterior frontal lobe in the precentral gyrus". Basically, we understood it was some sort of lesion and the MRI report stated that this was "most consistent with a metastasis given the patient's age".

We got scared a bit initially, but all of the tests afterward came back negative... CT scans, chest x-rays, a colonoscopy, blood work, mammogram, etc... Everything was negative for cancer. I went up to visit the last week of all of the testing, as mom started to get increasingly nervous the more she saw the doctors and medical people around her getting nervous. The Friday I came up to CT, mom had one final test that came out negative so we celebrated that weekend and mom informed everyone that no one was more "cancer free" than she.

However, her walking continued to get worse and the drop foot was becoming increasingly debilitating. She could no longer drive at all and had been given some medical leave by her The Hartford. We considered things like neurological symptoms from Lyme's Disease or the dog dragging her off the porch three weeks ago... who knew? It wasn't cancer because it hadn't metastasized from anywhere else. We had the proof!

That Monday, I took her to the doctor for a follow-up appointment with Dr. Rosenberg. Prior to this, he had ordered the MRI, received the results, and then went on vacation for two weeks. Dr. Levine, a physician in his office had been doing the follow-up consults and referrals with mom. However, Dr. Rosenberg was back for her appointment on Monday and informed us flat-out that she had a tumor and needed a neurosurgical consult ASAP.

The next day we met Dr. Patrick Senatus at his office next to UCONN Hospital. He confirmed that mom had a lesion affecting the motor cortex and all of the consistent symptoms; clonus (beat-like movements) in the right leg, increased reflex around the medial ductors, and a Babinski sign (upgoing toe) on the right foot.

Dr. Senatus informed us that the general standard of care involves a biopsy to core the lesion out and get a sample of it to determine the next course of events. Depending on how the biopsy came back, stereotactic radio surgery and/or radiation therapy would be considered for treatment. Part of the purpose of mom's craniotomy would be to resect the lesion and part would be to biopsy it to determine what type of tumor it was. He told us that the protein markers and such inside of the tumor would signal where the likely original site of the tumor was. Since mom's scans had come back clear, perhaps it was a metastasis from somewhere in her body that was too small or too new to show. Dr. Senatus was able to secure the OR for the very next day and she went for her next MRI that evening to more accurately guide the surgery. That MRI showed that the lesion had grown already, from 1.2-cm to 1.4 x 1.5-cm.

So, on November 26th, the day before Thanksgiving, we drove mom to UCONN for brain surgery. Mama Marian was convinced that if she blew her nose hard enough the tumor would eject itself so we tried that. We also tried talking to it, yelling at it, rubbing it, etc... no such luck.

The surgery started at 4pm that Wednesday afternoon. It was about a five hour procedure in which Mama Marian was put under general anesthesia by Dr. Yasuda, her anesthesiologist and was then put on a ventilator just in case. She was awakened twice during the procedure by Dr. Yasuda reducing the anesthesia to make sure that the resection of the tumor was on target.

May, Caitlin, and Esther all came to see Mama Marian off that afternoon. It was an awesome send-off and mom went into surgery with a smile! Jeff, Dou, and Lorien had begun the ridiculously long journey from Alabama (where Jeff was doing a month of training) to Connecticut by car!

At 9:15, Dr. Senatus came out of the OR and informed us that the procedure went well and that mom was recovering nicely. The biopsy was only preliminary as they were only able to determine the grade of the tumor, not the type. Dr. Senatus explained that it was a very high grade tumor. He hoped that the tissue sample sent to the lab for further testing would indicate that it was a metastatic lesion, as opposed to an intrinsic lesion.

The primary goal of the surgery was to get tissue to make a diagnosis. The sample indicated that mom's tumor was, in fact, malignant and hypercellular. The frozen section sent to the lab for further testing would be stained for dividing nuclei to see if the cells growth was arrested or growing. Dr. Senatus explained that if the tumor was intrinsic, the tissue cells would have "glial markers", whereas if the tumor was a metastasis, the markers would show where the original site was (i.e. "lung markers" from lung cells). We were now hoping for the tumor to be metastic because that was associated with lovely words like "cure". However, we would not know for a few days when the pathology report was expected to come back.

Mom did amazingly well recovering from her surgery. In fact the day after she was asking for Tylenol and rejecting the Morphine. She had a follow-up CT scan the night of her surgery and then an MRI the next day. The scans showed Dr. Senatus' incredible accuracy and "remarkable resction" (everyone is amazed by this man!) They also indicated swelling that had extended to the premotor cortex and some minimal edema (fluid around the tumor). He showed us the necrotic tissue on the CT scan, which was actually very small and emphasized how fortunate we had been to catch this thing so early on.

After two days, she was moved to the surgical floor of the hospital where she started more intensive physical therapy. That Saturday morning, Dr. Senatus met with us in mom's room and told us that the pathology report had come back early and did we want to know? We didn't but said we did...

Mom had a Glioblastoma Multiforme (GBM); a.k.a.- astrocytoma WHO grade IV/IV (I do not like the explanation of this and will therefore NOT provide a link to it)... basically a big ugly tumor in her brain that had just started growing there... not originating from anywhere else in her body, just sat right down there on her frontal lobe and decided to take up residence. It was described as parasitic and vascular, multicellular and just plain evil. The tumor is selfish and feels the need to take over everything around it, causing all of mom's problems on the right side of her body.

So, after several days in the hospital, mom was discharged home with a walker, a ton of steroids, and a black cloud trailing behind. She started walking so quickly after returning home and was doing incredibly well with in-home PT. Even though she is my mom, I have to say that she is the world's strongest woman and an awesome patient.

Two weeks from the date of her surgery Mama Marian began radiation therapy at UCONN five days per week. She started taking Temodar, a chemotherapy pill, on the evenings she had radiation as well. May hooked us up with "Marian's Miracle" and my parents were infiltrated with visitors, large feasts, bouquets of flowers, and every kind of good-smelling lotion available. On top of that came rides from friends all over the place to help out with getting her to and from radiation and doctor appointments. It has been so hard for Jeff, Dou, and I not to be there with her for those couple of weeks between visits but this made things bearable. In fact, I think Mama Marian cried more happy tears about how wonderful people were than she did sad ones about her diagnosis...

Christmas Eve was turned over to Dad, Jeff, Doughty, and me. As per usual Strange family tradition, we had family in for dinner that night. Although I must say it was more work than I ever could have imagined, it was the best holiday ever in so many ways. We didn't do presents (well, minus Lorien gifts) and had the most beautiful snowstorm on our trip up to Connecticut and all through the next day for our annual Christmas Tree event. Mom calls this the "cursing of the Christmas Tree" but it was milder than it has been in other years! We got to spend Christmas Day at home watching Lorien delight in her new train set and Elmo Live. Jody drove up from Virginia that night and instantly became Lorien's man-sized Mr. Potato Head boyfriend.

The weeks after Christmas were harder as mom finished her six weeks of radiation and chemo. She began to lose all the hair on the top of her head (she referred to herself as "Benjamin Franklin" for some time) and the swelling from the steroids became worse. Exhaustion set in and our mom, the lover of naps, became not so fond of the fact that she was sleeping through most of her days.

When I came to visit at the end of January, mom was doing well though. She was using her cane more to knock icicles off restaurant awnings and for enunciation than she was for walking and likened her newfound look to Winston Churchill.

As the doctors began reducing her steroid dose, however, she had the first of several seizures. This was scary and we didn't know what was going on but she was put on Keppra to reduce the seizure activity and her steroid dose went back up shortly after.

During the first three weeks of February Mama Marian began to lose some of her motor functioning again. By the time I returned for a visit on the 22nd she was having extreme difficulty walking and had begun falling and losing her balance quite a bit. This was just recently alleviated by another increase in steroid dose. Her MRI on the 9th showed that the tumor had not grown visibly in size but had thickened, possibly from the radiation or perhaps from cell growth. We were told that we would not know until the next MRI, scheduled for March 27th. February was not a great month and so we are glad to have March come along, hoping for spring to arrive on the heels of this next snowstorm.

Mom goes for her CT/PET scan on Thursday and we'll know more on Friday when we meet with Dr. Senatus about where we go from here... Possibly another surgery, possibly the new drug Avastin, probably more chemo, and definitely more not knowing and sometimes not wanting to know.

Regardless, it's nice to have to time at home with my family and friends and it's wonderful to have an "excuse" to be with my mom on a regular basis. In all of this, we continue to find little pieces of promise and unforeseen gifts along the way.

A Better Day...

Yesterday was a relief, to say the least. Mom started taking the Decadron (steroid) three times per day instead of two and this has made all the difference. Of course, reading about this through message boards, etc... you learn a lot AFTER the fact and apparently this is a fairly common issue among GBM patients. Steroid dependence is tricky with cancer treatment and premature withdrawal can be excruciatingly difficult.
So, Mama Marian was in rare form last night, as I have not seen her in months. Of course, I left this morning to come back to Virginia! However, Jeff came in late last night from South Carolina and is spending the weekend. McLean Home Health came today to assess mom and have referred her back to physical therapy. It looks like she won't need someone around the clock as it appeared just yesterday morning! And such is the roller coaster that everyone tells us about...
Hopefully, there will be no more seizures since the Keppra was increased and the swelling in her brain from the surgery and treatments is under control. Of course, the side effects are less than desirable. Exhaustion, hair loss, facial and midline swelling, and water retention are all suddenly very relative, however. Having Mama Marian back, shouting demands for white wine and "brakes" on her walker are an absolute delight!

CT Scan/Neurosurgeon Consult

Yesterday was perhaps the busiest day that did not involve leaving the house (thank you, thank you to friends who brought food and themselves to visit!) We had three hundred phone calls to make and three hundred more that came in regarding meds, bills, appointments, etc... and in the midst of it all, mom had another focal seizure after not having one in several days. We contacted the doctors, had some of her meds changed, a CT scan ordered for this morning, and an appointment scheduled with her neurosurgeon/neurologist to follow up. Mama Marian has been taking some treacherous dives for the remote, the shampoo, etc... that have landed her on the floor and bruised up and down her right side. She's been experiencing a lot of difficulty with fine motor skills and coordination on her right side, which has led us to find a home health nurse during the days when dad isn't at home.

So, at 7:30 this morning we went with mom to UCONN for her CT scan. After battling with rush hour traffic and wheelchairs, we finished the scan, had breakfast in our beloved UCONN cafeteria we know so well) and went to see Dr. Senatus, her neurosurgeon, at 10am.

Dr. Senatus showed us Mama Marian's CT scan and pointed out the part of the brain that controls her movement on the right side. It had been assaulted by this mass of cloudy stuff that is apparently edema, fluid surrounding the tumor. And, yes, we asked the same question again... is it the tumor growing or is it radiation necrosis, a lovely oozing side effect of the Tomotherapy she underwent for six weeks this past December-January? By the way, that is so aptly named the "eloquent cortex". Dr. Senatus said that, as the radiation and chemo oncologists have said AND the Swedish doc and Waglie Fellow at Dana Farber, we don't know... and it's impossible for us to know with these scans. So, he consulted with the head of his department and they have recommended a CT/PET scan that will take it a step further to help guide her treatment. This involves injecting her with a radionuclide that cancerous cells uptake and can be monitored on the imaging.

If we find out that the "area of enhancement" has increased we may look at going back in for surgery to biopsy and resection the tumor. It would not have to be another awake craniotomy like before, but may involve implanting some kind of wafer or directly applying chemotherapy or radiation to the area. We also asked about Avastin, the drug mentioned at Dana-Farber, and Dr. Senatus promised to talk with some of his connections there, at Harvard, and at Columbia for more information on what might be the best route. Again, we won't know what we're doing or where we're going until we have MORE information.

Dr. Senatus informed us of his work with a doctor onsite who is developing a transgenerated tumor vaccine. He is banking tumor tissue so, of course, mom asked about making a deposit into the bank once we knew she might have to go through surgery again! We shall see...

The CT/PET scan is scheduled for next Thursday at 1pm and then a follow-up appointment with Dr. Senatus that Friday to talk about options for treatment.

Oh, before I go, mom wanted me to let everyone know that she is having a difficult time typing and so has been slow to get back to people via email, etc... She and ALL of us are so, so, so appreciative of all the amazing generosity and genuine kindness of everyone around us over these past few months. Thank you, thank you! :)

Dana-Farber Consult

Dad and I took Mama Marian all the way to Bean Town yesterday for a 1pm consult with Dr. Jan Drappatz, M.D., with the Center for Neuro-Oncology at the Dana-Farber Cancer Institute.  We met with him and Dr. Wagle, a Clinical Fellow, and they reviewed mom's MRI from February 9th. They came to a similar conclusion as Dr. Hegde and Dr. Dowsett at UCONN had after reading the scan.  The tumor is the same size as it was in the most recent MRI (December before mom's d/c after surgery) but it has "thickened".  This could mean that the tumor is leaking "contrast fluid" into the tissues next to it or the tumor is growing.  It is unclear right now whether or not the Temador (the oral chemo pill) is working. 

However, Dr. Drappatz would like to do either an MGMT test to determine the tissue's sensitivity to the Temador or a very new Gene Expression Profile that looks at a variety of genes expressed in the tumor to determine whether or not mom has the enzyme that responds to the Temador.  The test takes 10 days and they will need to first acquire a "block" of the original tissue biopsied during mom's surgery in November from UCONN. 

So, we go back to Dana-Farber on the 12th of March to get another MRI in the morning and then meet with Dr. Drappatz and Dr. Wagle to go over the results of the gene expression profile and/or MGMT and the MRI.  

It's nice having options and mom is excited about being involved in any kind of clinical study or gene testing.  We continue to cross fingers, toes, legs, and sometimes eyes...

Purpose

It's been three months since Mama Marian was diagnosed with a brain tumor and there have been so many changes; so many updates, pieces of information here and there, etc... that it seems to make sense to take advantage of 21st century technology to keep everyone updated.  

Well, it ALSO serves to keep us a little more sane!  

Through everything, the people around us have been unbelievably supportive and, quite honestly, needed more than I think most of us would like to admit.  And, as awesome as it is to have so many friends and family calling, writing, sending well-wishes and emails, it's also sometimes overwhelming to have to share the same information again and again.  

As you can imagine, there are also a million and one things that my mom wants to do to give back, but it's getting harder and harder to do this in a way that's personal each time.  So, please excuse the formality of the blog venue, know that everything you've done and continue to do is so "utterly fabulous" (in the words of Mama Marian), and that I will do my best to keep this site up to date with information on my mom's recovery.