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.