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.